The paperwork never ends The Archives
June 1-15, 2001 Archive Index CHFpatients.com

Jan's 6-1 reply to Claire's 5-31     familial (inherited) cardiomyopathy
 
Ruthie A's 6-1 reply to Michael's 5-31     dry skin and heart meds
 
Fred D 6-1     Social Security Disability
 
Mary Lou L 6-1     a tool to help when eating out
 
William B's 6-1 reply to Michael's 5-31     dry skin
 
Christy P's 6-1 reply to Michael's 5-31     dry skin
 
Julie G 6-1     update, frustration with docs
 
Debra 6-1     does anyone get muscle and joint pain?
 
Stephanie 6-1     seek encouragement from Coreg users
 
Wanda S' 6-2 reply to Michael's 5-31     dry skin
 
David A's 6-2 reply to Stephanie's 6-1     Coreg experience
 
Vee's 6-2 reply to Jon's 5-31     Coreg dose questions
 
Jon's 6-2 reply to Vee's 6-2     Coreg dose changes
 
Vee's 6-2 reply to Deborah's 6-1     CHF meds & muscle/joint pain, side effects
 
Barbara 6-2     does anyone have jerking or insomnia problems?
 
William B's 6-2 reply to Stephanie's 6-1     Coreg experience
 
Joanne 6-4     do CHFers need more sleep?
 
Margeree 6-4     congestion, sleep, meds & more
 
Jon's 6-4 reply to Margeree's 6-4     diuretics, heart meds, & to Jack
 
Mary A 6-4     update, Disability, doctors, prayer request
 
Sylvia E's 6-4 reply to Barbara's 6-2     Restless Legs Syndrome possibility
 
William B's 6-4 reply to Debra's 6-1     muscle and joint pain
 
Carol W 6-4     request for smokers, dry skin & more
 
Autumn 6-4     update, could sure use some advice
 
Ginger 6-4     venting, docs, meds, side effects & more
 
Jon's 6-4 reply to Ginger's 6-4     docs, meds, side effects & more
 
John Len's 6-6 reply to Carol W's 6-4     hydrocortisone cream and smoking
 
Jon 6-6     update
 
John Len's 6-6 reply to Sylvia E's 6-4     restless leg syndrome
 
Ginger's 6-6 reply to Jon's 6-4     insomnia and doctors
 
Jon's 6-6 reply to Ginger's 6-6     insomnia and doctors
 
Amelia's 6-6 reply to Jon's 6-4     doctor shopping, Coumadin & INR/PT questions
 
Stephanie 6-6     made it to another birthday!
 
Thelma 6-6     seek asthmatics' experience with Coreg
 
Donna Z's 6-6 reply to Joanne's 6-4     sleeping a long time
 
Jim T's 6-6 reply to Joanne's 6-4     sleeping a long time
 
Ben B's 6-6 reply to Carol W's 6-4     stopping smoking
 
Sandy 6-6     does anyone use hawthorne?
 
Michael's 6-6 reply to Joanne's 6-4     sleeping a long time
 
Debra C's 6-6 reply to William B's 6-4     swelling in feet and legs
 
Sylvia E's 6-6 reply to Joanne's 6-4     sleeping a long time
 
Anna N's 6-6 reply to Joanne's 6-4     sleeping a long time, muscle & joint pain
 
Charles M's 6-6 reply to Joanne's 6-4     lack of sleep
 
Barbara P J's 6-6 reply to Joanne's 6-4     sleeping a long time
 
Julie G's 6-6 reply to Amelia's 6-6     Coumadin & INR/PT
 
Greta M 6-6     questions - tests, specialists & more
 
Debra C's 6-6 reply to Mary A's 6-4     the Disability process
 
Salah 6-6     seek advice on CoQ10 brands
 
Amelia's 6-6 reply to Ginger's 6-6     insomnia, depression & docs
 
Roz' 6-6 reply to Ginger's 6-6     insomnia, depression & docs
 
Sammy 6-6     cataplexy, narcolepsy, niacin questions
 
Tonya Dean 6-6     is my Coreg dose high enough & more
 
Rick M 6-7     Coreg is now VA supported & more
 
Katy 6-7     intro, guilt, question
 
William B's 6-7 reply to Amelia's 6-6     Coumadin levels, sleeping a lot
 
Jon's 6-7 reply to William B's 6-7     Coumadin levels
 
Karen K's 6-7 reply to Jon's 6-6     your daughter's achievement
 
Jon's 6-7 reply to Karen K's 6-7     purely a proud papa post
 
Bill B 6-7     varying EF question, sleeping a lot
 
Mary Lou's 6-7 reply to Thelma's 6-6     Coreg and asthma
 
Mary Lou's 6-7 reply to Joanne's 6-4     sleeping habits
 
Luc D 6-7     Cozaar (losartan) question
 
Joanne 6-7     sleep topic responses
 
Alexis 6-7     reading in bed
 
Jack D's 6-7 reply to Sandy's 6-6     Hawthorne for the heart
 
Jack D's 6-7 reply to Salah's 6-6     CoQ10 formulations
 
Jack D's 6-7 reply to Ginger's 6-4     sleep, quiet, bridging
 
Phyllis A's 6-8 reply to Joanne's 6-4     needing lots of sleep
 
Phyllis A's 6-8 reply to Thelma's 6-6     asthma and CHF
 
Jon 6-8     new asthma med suitable for CHFers
 
Mary Lou's 6-8 reply to Luc D's 6-7     Cozaar experience & more
 
Amelia's 6-8 reply to Julie G's 6-6     Coumadin experience, thanks
 
Pat 6-8     insomnia
 
Ruthie A's 6-8 reply to Luc D's 6-7     Cozaar experience, tip
 
Fred D's 6-8 reply to Mary A's 6-4     disability experience, questions
 
Jon's 6-8 reply to Fred D's 6-8     companies & their insurers
 
William B's 6-8 reply to Jon's 6-7     Coumadin and INR/PT
 
Valerie D 6-8     catching colds & flu - questions
 
Jon's 6-8 reply to Valerie D's 6-8     colds & flu
 
Joanne E's 6-8 reply to Katy's 6-7     getting the diet right
 
Alexis 6-8     Coreg and asthma experience
 
Julie G 6-8     seek Rx meds financial help or cheaper sources
 
Wendy B 6-8     has anyone else taken Ambien for insomnia?
 
Joanne E's 6-9 reply to Wendy B's 6-8     Ambien experience
 
Amelia's 6-9 reply to Julie G's 6-8     Rx drug price differences
 
Dorothy P's 6-9 reply to Ginger's 6-6     sleeping tips
 
Autumn 6-9     update
 
Jon's 6-9 reply to Autumn's 6-9     do your docs talk to each other?
 
Sammy L's 6-9 reply to Julie G's 6-8     Rx drug cost assistance
 
Maxine S 6-9     got an implanted device for my CHF
 
Robin L's 6-9 reply to Sammy's 6-6     update, CHF specialists are critical to success!
 
Christy P's 6-9 reply to Amelia's 6-8     Coumadin and INR/PT
 
Michael 6-9     has anyone had a liver biopsy?
 
Thelma 6-9     Coreg & asthma, sleep meds
 
Jon's 6-9 reply to Thelma's 6-9     sleep meds
 
Lisa C 6-9     does anyone else experience this?
 
Ruthie A's 6-9 reply to Julie G's 6-8     Rx meds financial aid sources
 
Thelma's 6-11 reply to Jon's 6-9     Benadryl, Ambien, Sonata, & sleep
 
Wendy B 6-11     broccoli and Coumadin
 
Jon's 6-11 reply to Wendy B's 6-11     broccoli and Coumadin
 
Jan 6-11     caregivers & loved ones
 
Ginger's 6-11 reply to Robin's 6-9     foot and leg pain questions
 
Autumn's 6-11 reply to Jon's 6-9     pacemakers, ischemia, drug classes & more
 
Jon's 6-11 reply to Autumn's 6-11     pacemakers, marathons, drug classes
 
Dorothy 6-11     asthma diagnosis, sleeping a lot
 
Ginger 6-12     prayer requests for Joy and Sarah
 
Robin L's 6-12 reply to Ginger's 6-11     leg pain experience
 
Marc Schlotthauer 6-12     seek others similar experience
 
Tom 6-12     seek Plavix experiences
 
Mary A 6-12     Disability hearing, prayer request
 
Carol B's 6-12 reply to Julie G's 6-8     getting meds help
 
Sammy 6-12     questions, heart racing & more
 
Bill D's 6-12 reply to Tom's 6-12     Plavix vs aspirin
 
Joanne E's 6-12 reply to Robin L's 6-12     leg pain
 
Sammy L's 6-12 reply to Tom's 6-12     Plavix experience
 
Sammy L's 6-12 reply to Robin L's 6-12     intermittent claudication
 
Patrick M 6-12     Medi-cal question (California)
 
Amelia's 6-12 reply to Tom's 6-12     Plavix experience
 
Julie G 6-12     update
 
Ginger's 6-13 reply to Robin L's 6-12     foot and leg pain, doctors & more
 
Jim 6-13     just diagnosed - lots of questions
 
Claire E 6-13     insomnia and sleeping a lot
 
Robin L 6-13     Plavix experience, leg pain
 
Tony T's 6-13 reply to Marc Schlotthauer's 6-13     arrhythmias & more
 
Fred D's 6-13 reply to Jim's 6-13     appointment intervals, sex & more
 
Tracey C 6-13     PPCM and subsequent pregnancies
 
Jon's 6-13 reply to Tracey C's 6-13     PPCM and subsequent pregnancies
 
Joanne E 6-14     no CHF doc nearby - what to do?
 
Jon's 6-14 reply to Joanne E's 6-14     monitoring your own treatment
 
Bev T 6-14     my Disability has been approved
 
Randy B 6-14     glad to help regarding transplant info
 
Joy R 6-14     update, question
 
Jan's 6-14 reply to Tracey C's 6-13     pregnancy and heart trouble
 
Jan 6-14     CoQ10 side effects questions
 
Joe S 6-14     questions about diabetic diet requirements & limitations
 
Sammy L's 6-14 reply to Robin L's 6-13     Plavix & headaches, and to Tracey C
 
Brandy 6-15     BP drops when standing - questions
 
Jon's 6-15 reply to Brandy's 6-15     postural hypotension, side effects
 
Jack D's 6-15 reply to Jan's 6-14     CoQ10 side effects
 
Jon's 6-15 reply to Jack D's 6-15     CoQ10 side effects
 
Amelia 6-15     adding more meds, driving privileges - questions
 
Jon's 6-15 reply to Amelia's 6-15     adding meds
 
Roz W's 6-15 reply to Joy R's 6-14     changing hospital policy
 
Ben B 6-15     seek generic lisinopril & more
 
Jon's 6-15 reply to Ben B's 6-15     generic lisinopril
 
Sandra 6-15     am now unsure of many things
 
William B 6-15     important questions asked here
 
Jon's 6-15 reply to William B's 6-15     important questions
 
Maura 6-15     CHF & pregnant - what now?
 
Mary Lou L 6-15     new a-fib treatment bulletin
 
Nancy's 6-15 reply to Dorothy's 6-11     do doctors really know?
 
Sammy L 6-15     sometimes it gets very hard
 
Jon 6-15     page updates
 
Rob C 6-15     numbness & back pain questions
 
Jack D's 6-15 reply to Jon's 6-15     CoQ10, side effects & red meat
 
Jon's 6-15 reply to Jack D's 6-15     CoQ10, side effects & red meat
 
Jim L 6-15     how to easily cut Rx drug costs down
 
Joy R 6-15     got it all squared away
 
Pat Y 6-15     Disability experience
 
Sherrell G 6-15     Mike J died - prayer request for family


Jan's June 1 reply to Claire's May 31, 2001 - Hi Claire, There's a wonderful site at www.fdc.to/ for those with questionable hereditary IDCM. Is there a reason you asked this? Basically, if anyone in your family has ever had any heart problems, there's a possibility it's a familial thing with you. IDCM shows up in so many different ways that it has been difficult for them to track it and prove that it can be hereditary.
     As for me, my dad had an early heart attack due to CAD, my mother died at 43 due to what they thought was valve problems caused by dhildhood rheumatic fever, and my great gramma had an arrhythmia but lived to age 96! It turns out that my mom had CHF and IDCM but no one knew until after she died. The Oregon Health Sciences University (the folks at that web site) are currently testing my blood and perusing my mom's and brother's autopsy reports to try to see if it's genetic. It's important fot me to know because I have two kids and they have a 50/50 chance of getting it if it's familial.
     Try writing to the Oregon folks with your concerns. They are very friendly and helpful. Good luck! Is anyone else working with them? Anyone heard back on their results?
     I have a question for those of you who actually read through all this. I recently started getting stomach pains and frequent afternoon headaches. Does this sound like side effects from meds? I'm afraid I may have developed an ulcer but am hoping it's just another Coreg thing! Peace, out. therowlands@att.net
 
Jon's note: Everyone, please remember to check the Links page for links to heart info you may be seeking.


Ruthie A's June 1 reply to Michael's May 31, 2001 - Hi Michael, I'm sorry to give you some bad news but my CHF doc says that my dry skin problem is from the meds and that I just have to live with it. He said that the ACE inhibitor especially may be the culprit, only to be exacerbated by the other heart meds. He really didn't give me any hope.
     For my hands I use Neutrogena's Swiss Formula hand cream. It's kind of greasy at first but it sure helps keep my hands from cracking. I rub a bit into my arms and legs as needed to keep the dryness there down to a dull roar. If I just can't stand the greasies, I keep lathering on the regular lotions and bite the bullet. I hope my suggestion helps, Ruthie A. rlaba51@yahoo.com


Fred D, June 1, 2001 - Hi, I just received notice that my claim for Social Security benefits has been approved. I started all this on February 2, 2001, so I feel quite fortunate that I was approved the first time and that it did not take that long to approve.
     Suggestions to those applying for Social Security include: Make sure you furnish a letter from a specialist that says that not only can you not do the job you were doing, but that you cannot do any type of work. I really think that was what sped up my application. When you talk with your doctor, make sure that he understands the seriousness of the situation. If you are asked to see a doctor of their choice, you really need to make sure he is convinced that you are disabled. Do not indicate that you are making any improvement. I am not suggesting that you lie, only that you leave anything positive out of your conversation if possible. If you are truly too sick to work, make sure that they know you are. Make it very plain and clear what your condition does to you. Requesting Social Security is serious and you need to have all your ducks in a row. Jon has some really good advice, make sure you read all that he has to say before starting. If you are unsure of your ability to do this, get an attorney! They can only take a preset amount for their services.
     I now plan to continue my case against my employer for disability. My attorney has said that getting Social Security should help a lot. Good luck to all, and thanks Jon, for your advice. deal@midusa.net


Mary Lou L, June 1, 2001 - Hi All, I thought this might be of some interest to those CHFers who like to eat out on occasion. Most of us probably surrender to this vice at one time or another. <g> Suppose you're going on a trip but you don't want to seriously blow your diet. If you make stops at fast food places along the way and buy the most popular offerings, you can almost be sure you are blowing your diet. So what can you get at a fast food drive-through that will keep you honest? To find out, use a Food Finder, where you can enter the values to adhere to in your diet and then print the results for all the restaurants of interest. Bon appetite. MLBinks@aol.com


William B's June 1 reply to Michael's May 31, 2001 - Hi, I am on almost the same treatment that you are receiving. My face looks like a bad case for Head and Shoulder shampoo. I do not know if it's the drugs or just the lack of oxygen getting to the things that need oxygen. William B. willdet@juno.com


Christy P's June 1 reply to Michael's May 31, 2001 - Hiya Michael, Jon and everyone, I have terrible dry skin problems too, but have always had eczema on my hands. It seems to have gotten worse since my CHF episodes 2 years ago. I use the new Vasoline Intensive Care or Nutrogena hand cream products only. There is something called Zim's Crack Creme that I've heard several folks speak highly of, but turned out that I'm allergic to it and it only made my dry skin itch and worsen. These products help but I need to heal them by using a prescription product called Elocon or Temovate. Your best bet is to mention it to your CHF specialist. There should be something out there that can help target the areas that you're having problems with and not cause you other problems with your heart condition. The medications need to be specific to the problem area. Good luck finding the right mix. breezip@hotmail.com
 
Jon's note: Working in a lumber mill in winter, we always used bag balm on our hands ;-)


Julie G, June 1, 2001 - Hello to everyone, I am thankful for this site because today I need to rant and rave, and my poor husband has borne the brunt of a lot of it. He keeps telling me to have faith, and I do, but I am just so angry right now. I have come to accept my disease and I know what will be will be but I can't always be peaceful about it. Here is my situation:
     In February of this year I had 2 mild heart attacks that were not diagnosed until I had a third one on March 2. My cardiac doctor said he knew I'd had them because of heart damage and blood work he ran afterward. I had to have a pacemaker implanted because my heart likes to rest for 5 to 6 seconds sometimes between beats . On the 16th of May I had a drug-induced stress test. They told me to contact my PCP in 7 days for the results, which I did. Not only did she not call me back, her nurse finally did and told me that my doctor was leaving at the end of June and I had to pick another doctor. I picked the one that came in and prayed for me when I was in the emergency room - I figured if she is a Christian and has any knowledge, I would be in good hands, but only time will tell.
     I have to go see my cardiac doctor on June 8 to get the results. If they are bad, I will require surgery in a city 120 miles from where I live by a doctor I never heard of, let alone met. I think that this is a very bad way to treat people and I'm getting tired of being just another money-making oppertunity for them. Thank you for taking the time to read this and thanks Jon, for this site. May God hold you in His palm, Julie G. lgoehl@dstream.net


Debra, June 1, 2001 - Hi, My name is Debra. Does anyone experience joint pain and muscle pain? Thanks, Debra. lcaple@bellsouth.net


Stephanie, June 1, 2001 - Well, My doctor boosted my Coreg again. I am up to 31.25mg twice per day. I was sure that 25mg twice a day was my goal for a theraputic dose. This boost is really a tough one. I was really doing pretty well so this setback is hard. I am wondering what doses of Coreg people are on. I guess I need some encouragement to get through this. I am close to tears most of the time and I haven't been this way before. Sunshine and smiles, Stephanie. moodystephanie@hotmail.com


Wanda S' June 2 reply to Michael's May 31, 2001 - Hi, I have had dry skin for years, probably from medication. About a year ago I was taking radiation treatments which dried out my skin even more. They recomended Cetaphil cream. It also comes in a lotion and soap. I have been using the soap and cream and it has worked wonders. mom6@bright.net


David A's June 2 reply to Stephanie's June 1, 2001 - Hi, Usually the guideline for target dose of Coreg is dependent on your weight. However, in my situation the physician felt that more was better as long as I could function and tolerate dosage increases. My prescribed amount for my weight was 25mg twice a day. Last year, over the summer, I was bumped up to 37.5mg twice a day in 3.125mg increments. The hoped for target dose was 50mg twice a day. I never made it that high.
     I was doing well at the 34.375mg point. However, that last increase to 37.5mg twice a day seemed to put me over the top. With the combination of other medications such as vasodilators, hot weather, and taking warm showers, I blacked out 2 times in 4 days. Needless to say, I went to the emergency room at my local hospital and one of the first things done after my workup was authorization to lower my Coreg dose back to 25mg twice a day. Since that time I have had no more blackouts (knock on wood!). Regards, David A. Dezen@worldnet.att.net


Vee's June 2 reply to Jon's May 31, 2001 - Hi Jon, Could you please say just a bit more about decreasing Coreg and the problems with that? Why is it such a bad idea to drop below 6.25 mg twice a day? I'm in the process of trying Coreg after not doing well on metoprolol. I may never be able to tolerate much more than the minimum 3.125mg dose. Would that be useless or harmful? What happens if CHF becomes decompensated or my reactive airways suddenly get a bad episode? In either instance, wouldn't Coreg be discontinued or at least decreased for awhile? I've looked at some of the articles on your Links pages that attest to some pretty serious risks and rebound effects when beta-blockers are withdrawn. For myself, I've already had scary experiences with big blood pressure blips in the process of switching from metoprolol to Coreg, maybe because the doses were so different. Sorry to bombard you with so many questions but as you can see, you've piqued my anxiety. maize2001@hotmail.com


Jon's June 2 reply to Vee's June 2, 2001 - Hi Vee, This is so short because I'm really tired right now, sorry. If you are not above 6.25mg Coreg BID, you don't have to worry about reducing your dose from above that level to below that level, unless I am misunderstanding your situation. I honestly do not know if 3.125mg BID is going to reduce mortality for you because no trials of which I am aware address that issue. Jon.


Vee's June 2 reply to Debra's June 1, 2001 - Hi Debra, I've had problems with neck and pelvic/sacroiliac pain. It's muscle or tendon pain rather than joint pain, and it got worse in a very subtle, incremental way. Some insights from a fellow CHFer helped me figure out that some of it was from the meds. (Thanks Leland <g>) The main meds that bothered me were spironolactone (Aldactone), which caused headaches; and nifedipine. It's possible that some of the other CHF meds also play a part, but for now the pain's become manageable. maize2001@hotmail.com
 
Jon's note: Cholesterol lowering meds can cause severe muscle pain


Barbara, June 2, 2001 - Hi, I have not posted in quite awhile but have a question. Does anyone have trouble with their legs or other parts of their body jerking? It is muscles jerking all over my body. I have been cardioverted 4 times and never had a problem like this till I went through this procedure due to a heart rhythm problem happened. I just would like to hear from anyone else who has a problem with this. I also noticed more of a problem sleeping since this happened. I just would like other people share their opinion of what this could be and what a doctor told them. I would appreciate some opinions on this nerve problem. Thank you! chnabby@aol.com


William B's June 2 reply to Stephanie's June 1, 2001 - Hi Stephanie, I am now taking 6.25mg Coreg. I really put the doc through the third degree about this drug and he is progressing only according to how it is affecting me. This dose seems okay to me and will probably be upped to tha next level next week. The doc and I have an understanding that any treatment which makes me feel worse than I have, we fall back and regroup for awhile and then go forward. When you know you will be taking something as long as you live to help keep you alive, I personally will not accept treatment that seems worse than the illness. Just my 2 cents worth. William B. willdet@juno.com


Joanne, June 4, 2001 - Hi, Do all of us CHFers need a lot of sleep? I am currently feeling quite well and my meds seem to be in balance but I sleep 11 or 12 hours a day. Is this a common experience? Should I just count my blessings? muddyrds@hotmail.com
 
Jon's note: I need that same 11 to 12 hours each night also. I hope others reply too (I'm curious).


Margeree, June 4, 2001 - Hi, On May 1, 2001, I was diagnosed with mild CHF. The cardiologist prescribed 5mg Accupril daily. I am wheezing during the night and being unable to sleep I was prescribed 40mg Lasix in the morning and 40mg in the evening. Originally I was taking 40mg in the morning and then 20mg was added in the evening. The increase does not help very much. After reading the other problems readers are having I feel I have no right to complain. Are there any support groups for CHF sufferers in the Cleveland area? I love this site. Keep up the good work, Jon. Thanks. egrampitt@aol.com


Jon's June 4 reply to Margeree's June 4, 2001 - Hi Margeree and everyone, I am making few replies and am keeping them short due to high-school graduation ceremonies fatigue (my daughter's graduation). I would not recommend taking Lasix in the evening. A higher dose in the morning would probably be better (You are taking prescription slow-release potassium, right?). You might look into adding zaroxolyn to your routine, taken 30 minutes before taking your Lasix every other day. This sort of "turbocharges" Lasix's effectiveness. You might also look into Demadex or Bumex, which are stronger, different diuretics.
     My guess, though, is that you need some further reduction in your heart's workload instead of more diuretic. Are you on a strict low-sodium diet? A beta-blocker? You also probably need a higher ACE inhibitor dose.
     By the way, Jack, if you read this, send the Url for that heart man like I got from you today! I don't normally endorse anything but this is the cutest little heart man I've seen. My wife loved it!
     To everyone, I probably won't get all the posts up today but I hope to catch up tomorrow. Open house was Saturday, Baccalaureate Sunday, Commencement tonight, and I'm just plain worn out. Jon.


Debra C's June 4 reply to Vee's June 2, 2001 - Hi Vee, Thanks for your reply on muscle and joint pain. It is sincerely appreciated. lcaple@bellsouth.net


Mary A, June 4, 2001 - Hello all, I posted here a couple of months ago about my frustration with my doctors and their lack of care. Well, due to an insurance shake-up, I was forced to once more "doc shop" and finally got the winning ticket. My new cardiologist immediately scheduled me for an echo (I hadn't had one in 2 years!) and a thallium stress test. Not a single one of my other docs had me take one. After she reviewed the results of the tests she immediately agreed to support my claim for Disability. She wrote a letter and filled out the lawyer's paperwork, basically saying I can't do anything, and that this is a permanent condition.
     Although it's depressing in a way that my condition is bad enough to warrant her immediate intervention, I feel much more optimistic about my chances of winning the case. I go to my hearing in less than 2 weeks, after having already lost on initial application and reconsideration. My big question, though, is why on earth didn't previous docs have me stress tested? Why did they think they could make judgements about my fitness to work based on outdated echos and no stress test?
     I may never know but I think that doctors are as subject to prejudice against disability as is the Social Security Administration. All of you please pray for me. Two years ago when I started this process I didn't know how I could possibly get any sicker than I was at that point. I'm only glad I started it when I did. kactus@voyager.net


Sylvia E's June 4 reply to Barbara's June 2, 2001 - Hi Barbara, I have the identical problem with my legs which prevents me from sleeping several nights a week. My primary care doctor prescribed Clonazepam to prevent this, called Restless Leg Syndrome. Before prescribing this drug, he had my potassium, magnesium and calcium levels tested to make sure those were not causing the problem. This drug has worked wonders for me. I only take it if I have been in bed for a couple of hours and the leg problem won't ease up. I then get relief within the hour and a wonderful night's sleep. Maybe you could ask your doctor about this. Good luck, Sylvia E. syledmonds@aol.com


William B's June 4 reply to Debra's June 1, 2001 - Hi, I think the old saying use to be in workouts, "No pain, no gain." From the new muscle and joint pain, I think, "No oxygen, all pain" should be the CHFers' motto. I went to a gun show several weeks ago and after twice around the show there wasn't anything anywhere that didn't hurt. I have been swollen and bloated for 2 weeks. Denial is slowly being removed that anything normally done is now a major effort and a long recovery to overcome. William B. willdet@juno.com


Carol W, June 4, 2001 - Hello all, I have not posted in awhile because my concerns have been more for my husband, who has been diagnosed with lung cancer. He has been a big help to me, taking over many of the tasks I couldn't do at home. Now he is severely fatigued and I am back to doing all I can to keep up.
     My question is for anyone out there who has had to give up smoking. I have never tried a cigarette so I don't know what he is going through. Can anyone tell me about what it is like to go through nicotine withdrawal?
     For all who have dry, flaking, itchy skin. It could be worth your while to see a dermatologist. Mine has given me a hydrocortizone cream that helps, especially on my face where the scaling and peeling can cause bleeding when it is really bad. Also I have found that Palmer's Cocoa Butter products helps, and they smell like chocolate.
     My prayers are with all of you. Tracy, sit your family down and be emphatic about your health, fatigue and need for help. If necessary, take them to see your cardiologist so he can reinforce what you have told them. Take my word for it, they are happy with the status quo until some one shakes it up. God bless, Carol W. cabwojo@adelphia.net


Autumn, June 4, 2001 - Hi everyone, I haven't read the posts for a little while. In the last 2 1/2 weeks I have been in the hospital or in the emergency room 3 times. After my doctor not treating me with antibiotics for the bacterial infection after my vomiting episode, and his pulling me off all my meds including my heart drugs, during my stay I decided I had to get a different GP. I did get an appointment with another doctor but it is still 4 weeks away so each time I land in the emergency room I still fall under the care of the GP I want to fire since he is the one here in our plan. This is a town of 2500 people with the nearest medical care 80 miles away.
     A week ago I had a small stroke. I temporarily lost some of my ability to speak and still have minor problems. Also, my memory problems have worsened and depression has started. Two days later I went to the emergency room with severe chest and jaw pain and a little pain in my left arm. I saw the EKG graph and part of the time the tall spikes are missing. I don't know what that means but my GP says that is normal. He diagnosed me with reflux, as he has been the past 13 months. Two days later my GP calls me at home to see how I'm doing. Another 2 days later he calls me again to tell me he's gone over all my upper GI series from 13 months ago and decided that though he's been treating me for reflux all this time the GI tests showed normal and he thinks I have blockages and angina, and that I need to see my cardiologist. The problem is my cardiologist is booked and it is almost impossible to see him. I may get a "work in" appointment in a week, and they said that in the meantime I'll have to go to the emergency room if I have problems.
     If I go to the emergency room I get stuck with the GP who will answer none of my questions and whose competency I cannot trust. Do others have this problem with getting the right medical care? I am concerned I am back in heart failure or nearly so because of him pulling my meds when I was sick. My BP was 186 over 125 when I came into the hospital and I had taken my meds about 2 hours before. I don't know what it got to later because I was so ill I remember little. I have had periodic chest rattle since then and a lot of tachycardia. In fact, tachacardia hit just before my chest pain a few days ago. I saw one of my medical papers saying "superventricular tachycardia." I am not familiar with that. I also have irregular heart rhythm and poor pulses on my right side.
     I am frustrated because I never get any answers, and I am worried because my brother died at 38 years old of sudden death. I would deeply appreciate if anyone could give suggestions on how to handle this situation of medical care. Thanks in advance, Autumn. AmberDawn-Blzn@webtv.net


Ginger, June 4, 2001 - Hi, Insomnia, that's a good place to start. I have it bad and only since I started with this heart stuff. I have found myself feeling liking I had jerked too, and if I am starting to doze off it wakes me up. On to muscle and joint pain, I have that too, and only in the last year although I have been on heart meds for 3 years. The newest thing is that when I get up in the mornng, my hands are swollen. Now they are swollen and sore when I get up most days. I asked my cardio doc about it and he gave me the off-handed reply that maybe you have some arthritis in your hands. He says especially women get this. Well, aren't we special? <lol>
     Well, 3 years ago I had nothing and now at the age of 47 I have back problems, muscle and joint aches and probable arthritis in my hands. Gee, I see wonderful improvement in 3 years after taking all these meds. I wonder what's next. Some nights when the insomnia is really bad, I toss an turn so much I think I get more exercise in bed then when I am up. My hubby calls it "flopping like a dead fish." <g> Nice analogy, huh?
     Anyhow, after being on all these meds for 3 years I can get up in the morning as sore an achey and tired and feeling like I am 90; But the upside to all this, guys, is that it's good for the heart. Too bad the rest of the body just feels awful! If I sound just a little bitter and sarcastic, sorry, but it's morning and I have not been up long. Usually by afternoon a lot of this stuff is either gone or down to a bearable dull ache. Of course by then the few pain pills I take have kicked in. Anyhow, I hope that helped answer some questions. I could have been less sarcastic and downbeat, but hey, everyone has their days. This one happens to be mine, I guess. The funny part is that I am not in a bad mood - just tired and weary, I think. I have a lot of issues with quality of life vs quantity, especially after what I have seen and been through with my mom and sister.
     I know what I have is nothing compared to a lot of you so the complaining makes me feel guilty, which is why I usually don't. My oldest daughter spent Friday night and Saturday in the hospital for chest pain. Her EKG had what the doc called "gaps" in it - like I know what a gap is! They did an echo but we won't have the results for a week. They also did a stress test, on which she did well except for the fact they wanted her heart rate to hit 166 and she could not get it above 145. I am not sure if that is good or bad. Depending on the results of the echo and stuff, they will start with upper GI tests next. Her chest pain wasn't exactly pain, it was chest tightness and she felt like she couldn't get in enough air to take a big yawn.
     Thanks for letting me yell and vent, guys. I just want no more problems or pain, either mental or physical. I sure want a lot, huh! ;-) Stay well, y'all. Hugs and prayers, Ginger.
     PS. Does anyone know what bridging means? angelgin@bellsouth.net


Jon's June 4 reply to Ginger's June 4, 2001 - Hiya Ginger, I know how you feel and I think many of us have the same issues. Here are some thoughts, probably not worth much. First, I am always amazed how people compare themselves to other people for disease severity and say, "I'm not nearly as badly off as you are, so why am I complaining?" In my view, symptom A in one person can be worse than symptoms A+B+C in another person. We're all different and we all react differently. Our bodies do not handle the same symptoms the same way, and neither do our minds. We feel as bad as we think we feel, so forget how others feel relative to that. That is only important when you're trying to help them, not when you are talking about you. ;-) Besides, if you weren't totally exhausted in your situation, Ginger, you would not be human.
     I am also getting pretty fed up with insomnia. It hit me after I got CHF as well, and I associate the two. I am interviewing another general care doc Wednesday - a teaching doc at a teaching hospital - and plan to make my insomnia my number one issue. At this point, I believe it is worsening my life far more than heart failure, although I believe the two to be related. I'll let you know if he comes up with anything. I am so insomnia'd out that I am ready to stop some heart meds to see if it helps. I really am. I just have to find a doc who'll watch over me and cooperate closely with my CHF doc.
     About muscle aches, breast pain, joint pain, headaches, and other side effects, please keep in mind that these can show up as side effects after years of trouble-free drug use. This happened to me with digoxin (Lanoxin). My symptoms showed up after 4 years with no problems on the drug. So don't assume that it can't be this drug or that drug just because you have taken it for long time without problems. You really need to get your doctor focused on quality of life when these issues come up. It really is our job to smack our doctors with a big stick - repeatedly - until they understand our concerns and priorities. They don't read minds. If they really cannot get with our program, then it's time to find a doctor who can. I sure hate changing doctors but my life is worth the trouble!
     On the Coreg front, my own CHF doc has finally seen the light and may be teaming up with me to run a long-term survey about the group of CHFers whose numbers have gone up but who feel worse instead of better since being on Coreg. Gino has been the only doctor to date who "gets it" on this issue so getting another doc to start thinking about it is a good sign. I think my CHF doc has finally realized the scope of the problem. I will be posting soon if he and I get a survey together that can be used by him to real effect for beginning an investigation of this problem.
     "Bridging" in medspeak means managing the transition from one state to the next. For instance, you might have an LVAD (heart assist device) implanted to keep you alive until a donor heart can be located for your transplant. That would be called using an LVAD as "bridge to transplant." I hope that helps. Jon.


John Len's June 6 reply to Carol W's June 4, 2001 - Hi, Hydrocortisone cream should not be used long-term. I use it but switch off to metrogel (prescription)and eucerin (over the counter) to help keep its use down. Here is a support group that might help: http://groups.yahoo.com/group/rosacea-support?yguid=8310526. Good luck.
     Oh and about the smoking, my only way was to keep a new unopened pack of cigarettes in my shirt pocket for a few months. I could smell the pack, I could feel it and even lick the pack, but never opened it. It worked for this 15-year 2 to 3 pack (unfiltered) per day ex-smoker. a_lenny6@hotmail.com


Jon, June 6, 2001 - Hi everyone, I'm not sure how well I will keep up the rest of this week. I'm truly pooped. By the way, the little heart man I asked Jack to send the Url for isn't one of his items. My mistake, sorry. :-( Jon.


John Len's June 6 reply to Sylvia E's June 4, 2001 - Hi, Here is an Url for restless leg syndrome: www.sleepnet.com/rls2000.html. a_lenny6@hotmail.com


Ginger's June 6 reply to Jon's June 4, 2001 - Hi Jon, Thanks for the advice. ;-) I gave up trying to talk to my doc about insomnia. Every time it comes up I hear, "That's a sign of depression." Yo, Hello, I am not depressed - I am tired from lack of sleep. If I am depressed, it's because I am depressed over not sleeping like a normal person. Instead, I am up all hours on the computer to pass the time till morning so I can get the kids up for school. The worst part is that I am the type of person that has a hard time sleeping during the day. Never mind the phones and people at the door. It has to be quiet and dark so daytime sleeping doesn't work for me till I am totally beat.
     I am still looking for a new PCP too. So far I have not made much progress but I know I must, and a good one if I want any quality of life back. I know being tired is part of what we have but it doesn't have to be added to by insomnia. If anyone has a doc who has an answer or remedy for this, please let us in on it! My hubby can lie own and be sound asleep in 5 minutes, kids, phone ringing and all. Grrrr I could choke him for it some nights! <g> Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Jon's June 6 reply to Ginger's June 6, 2001 - Hi Ginger, I hear you about the constant drum beat of depression from MDs. Like attention deficit disorder and pediatricians, MDs are indulging in fad medicine. That's my take on the unwillingness of many MDs to look beyond that first symptom to possible organic and Rx causes of insomnia and chronic pain. Fix the real cause so we can get some sleep and watch the difference. I am skipping entire sleep periods about twice a week now and believe years are melting off my longevity and dozens of points off my IQ because of it. Jon.


Amelia's June 6 reply to Jon's June 4, 2001 - Hi Jon, I read your post to Ginger about interviewing a new doctor. I have a doctor of 18 years but changed CHF doctors who are at the other end of town from my family doc, who also does not practice at the same hospital. I agree with you about having both doctors working together so I am looking for a new doc but how do you interview a doctor? Do they charge? What does one look for besides their credentials.
     On another note, how long does it take to regulate Coumadin? When I left the hospital my level was too high at 3.5. After one week it went down to 1.03 and today it is 1.04. They want it to be at least 2.5 to 3. Since the doctor will not let me drive, the office is going to make arrangements for home care to draw my blood every 6 days. They have now raised my Coumadin to 2mg five days a week and 3mg the other two days. I would appreciate any info anyone has. I asked about adding aspirin with it and they did not want to at this time. Thanks and best to all, Amelia. amelias@erols.com
 
Jon's note: Doc shopping tips at the FAQ


Stephanie, June 6, 2001 - Hey, June 4th was my birthday. Praise God! I wasn't sure I'd be around to see age 45. It's been quite a year. Thanks for being there for me and making all of this more bearable. Love, Stephanie. moodystephanie@hotmail.com


Thelma, June 6, 2001 - Hey all, It's been awhile since my last post. As I previously mentioned, back in February I switched over from Zebeta to Coreg and started the dreaded titration up to maximum beta-blocker dosage. Things were going great although I had a brief struggle bumping up from 18.75mg twice a day to 25mg. Well, I have made it to 25mg for the past month and a half but now my mild asthma has flared up, causing me big trouble. I have needed 3 bursts of steroids and numerous inhalers to breathe. I'm suspecting Coreg is aggravating the situation but the docs refuse to set the dose back. They just pump more and more pills into me and I'm getting depressed. How are you asthmatics dealing with being on beta-blockers? Prior to me getting a spring time virus I was fine. Also, I have called into work so many times I'm sure I'll be written up. I'm just frustrated and depressed. Thanks for letting me vent. Best wishes, Thelma. Tcull@prodigy.net
 
Jon's note: Coreg's official contraindications (reasons you should NOT take Coreg) say - and I quote - "Coreg is contraindicated in patients with class 4 heart failure requiring IV inotropic therapy, bronchial asthma (two cases of death from status asthmaticus have been reported in patients receiving single doses of Coreg) or related bronchospastic conditions, second-or third-degree AV block, sick sinus syndrome (unless a permanent pacemaker is in place), cardiogenic shock or severe bradycardia."


Donna Z's June 6 reply to Joanne's June 4, 2001 - Hi Joanne, Yes, I require at least 10 to 12 hours of sleep a night and if I don't get that amount I feel very worn out the next day. I can also nap during the day. It sure seems like I spend way too much time resting but then I guess we have to listen to our bodies. Donna. dzak@worldnet.att.net


Jim T's June 6 reply to Joanne's June 4, 2001 - Hi Joanne, I have had CHF for over 5 years and I need 10 to 12 hours of sleep each day. I get to bed about 10:00 PM each night and get up about 8:00 AM each morning. Then I take 2 to 3 naps each day at about an hour long each. My friends and family know I need this to keep going so I have no problem getting them. I have tried to get by on less but really get into trouble trying that.
     Even with this it takes me 2 to 3 hours to get going in the morning. When I get tired for any reason, my heart hurts, so I am careful not to do that. My doctor says that's the way it is with CHF. I have already been here longer than he thought I would be so don't fight it! As a friend of mine says, I still am on the right side of the grass. So I say keep rested and feel better and if someone doesn't understand, too bad. Jim T. jcrichtonyaylor@voyager.net


Ben B's June 6 reply to Carol W's June 4, 2001 - Hi, I had addictions to virtually everything you could imagine. About 15 years ago I gave up all mind-altering substances cold turkey, with a little AA. The toughest was alcohol. I never really once had a desire to drink or use it again. It was really no big problem. This was sort of a miraculous conversion - for which I take no credit. Three years after that, I quit smoking. Unfortunately, I didn't get the same divine intervention or maybe God just wanted me to "white-knuckle" it on this one for some reason. It was absolutely the hardest thing I had ever done in my life. For years I woke up craving a cigarette, and every time I left a building I thought, "Now I can light up!" until I remembered I didn't smoke anymore.
     When you smoke for a long time, you associate smoking with everything you do: fishing, camping, after a meal, while socializing. It is a hard thing to quit but if you have no choice, it can certainly be done and I think a person with lung cancer really has no choice. These days, at least in my local area, it is so hard to find any place to smoke that it might be a little easier but in Europe and Asia everybody smokes. I'm glad I didn't have to quit smoking over there. Good luck to your husband. I'll say a prayer for him. bdbrinkman@juno.com


Sandy, June 6, 2001 - Hi, Recently discussed use of Hawthorne as a method to assist heart muscle. Does anyone have any thoughts on this or use it? I don't think a regular MD would be happy about it or any another alternative method. Thanks, Sandy. ofatts@aol.com


Michael's June 6 reply to Joanne's June 4, 2001 - Hi, I have found myself sleeping 10 to 12 hours a day sometimes, especially after a particularly busy weekend. This is way out of character for me. Prior to my diagnosis, I slept about 6 to 7 hours a day and felt completely rested. I don't blame this lack of sleep on my medication alone, however. I believe a lot of it has to do with my reduced schedule. I plan on much less every day now than I did prior to diagnosis and just don't feel compelled to get up in the morning until I feel it is absolutely necessary.
     All the sleeping was making feel lazy and guilty but no matter how I tried, I stil found myself sleeping more. Finally I decided that extra sleep is just part of this whole mess. Instead of fighting it, I simply do more and more in my waking hours each day so I don't feel so guilty about it. anthrophobe@usa.net


Debra C's June 6 reply to William B's June 4, 2001 - Hi William, Thanks for your reply. I stay swollen in my feet and legs every month for about 15 days. Take care and God bless. lcaple@bellsouth.net


Sylvia E's June 6 reply to Joanne's June 4, 2001 - Hi, I am another one who requires 10 to 12 hours sleep each night. Maybe this is common to most CHFers. Sylvia E. syledmonds@aol.com


Anna N's June 6 reply to Joanne's June 4, 2001 - Hi, I just thought I'd add my 2 cents worth on your questions. I had joint and muscle pain for years and didn't know what to blame it on. This year, a rheumatologist finally diagnosed me with fibromyalgia. I'd recommend seeing a rheumatologist for unexplained pain. I can be added to the list of people who need a lot of sleep: 9 to 11 hours most nights and often a daytime nap too. snowyegret7@excite.com


Charles M's June 6 reply to Joanne's June 4, 2001 - Hi, I wish that I could sleep 10 or 11 hours. At 64 years of age I feel lucky to sleep 5 or 6 hours each night, and I do not take naps during the day. I worry about this lack of sleep and the effect on my weak heart. carvcove@aol.com


Barbara P J's June 6 reply to Joanne's June 4, 2001 - Hi, I also absolutely require 12 hours sleep, or more. My heart function numbers are "normal to low normal" but folks, believe this, I am tired! Of course I do take my heart meds, including Coreg, faithfully so you can add me to the numbers of those with much improved numbers but still feeling lousy. Keep the faith, Barbara P J. bpjohns@accessatc.net


Julie G's June 6 reply to Amelia's June 6, 2001 - Hi Amelia, I have a problem with getting my Coumadin regulated too. On March 3rd, while still in the hospital, they put me on 5mg a day plus a whole coated (enteric) aspirin. I was on that for 2 weeks then they upped it to 6mg daily for a week, then 7mg daily for a week, then 8mg daily for 2 weeks, then back to 7mg daily for 2 weeks. Now for the past 5 weeks I have been on 7½ mg daily and still have my blood checked every week. i am getting very tired of needles. I wish you good luck on this and may God hold you in His palm, Julie G. lgoehl@dstream.net


Greta M, June 6, 2001 - Hi, I heard from my primary care physician last week that based on an echocardiogram (ordered because I could only tolerate 4 minutes on the treadmill) I have diastolic dysfunction. She ordered a duplex carotid, which I'll be undergoing at the end of the month but didn't refer me to a specialist. In fact, she seemed puzzled since my blood pressure has always been low to normal. What is the carotid test for? Should I be assertive about a referral to a cardiac specialist? Am I being concerned needlessly? Where do I go from here? mclaughlin@tir.com


Debra C's June 6 reply to Mary A's June 4, 2001 - Hi Mary, I read your post on getting your Disability. Don't give up. They turned me down in 3 weeks. I hired a lawyer and she told me that all she needed was one word (cardiomyopathy). She said go home and wait and after 6 months I got my back paycheck. I will pray for you. Take care and God bless, Debra C. lcaple@bellsouth.net


Salah, June 6, 2001 - Hi all here, Please, I want someone to recommend a CoEnzyme Q10 brand to buy. It would be nice if the manufacturer is a big company like 3M or some such because small companies do not have offices here in Egypt. Thanks a lot. salahtawfik@link.net


Amelia's June 6 reply to Ginger's June 6, 2001 - Hi Ginger, I get depressed when doctors are so quick to say we are depressed without understanding our problems. I know how you and others feel having insomnia because that is a problem I am trying to solve too. I asked my CHF doc for something to help and he said no sleeping meds, just take Benadryl. I tried it and it helps. I get up 2 and 3 times to use the bathroom and usually I have a hard time falling back asleep so the Benadryl helps me. I used to get up and read and sometimes put the television on but then I get wide awake, so it's tossing and turning. I take Benadryl every 4th day so. Maybe we should have a 3:00 AM jam session! <lol> Good luck, Amelia. amelias@erols.com


Roz' June 6 reply to Ginger's June 6, 2001 - Dear Fellow Insomniacs, Ginger, your delightful sense of humor remains intact despite the travails of pain and disability and coping with heartless heart specialists. I think it is a strange kind of comfort, but most of us CHFers find our burdens a little lighter when we read letters like yours.
     Dear Jon, first I think all of us are impressed by the remarkable academic achievements of your daughter. Your fatigue at witnessing her honors is well worth it. Congratulations to the entire family.
     Now about insomnia, my husband did not suggest that I was "flopping around like a dead fish" (tut tut! Dead fish, I find, seldom move) but we did decide to turn the study into a second bedroom and a room of one's own is a wonderful thing. I often read until 3 in the morning, which makes insomnia bearable. Escaping into a book instead of staring into the dark and horrors, thinking is as Martha would say, "a good thing!"
     I never had a problem sleeping until CHF and your project to try to discern a correlation should help us all Jon. I think the same correlation may exist in the depression that so many of us have experienced. The brain is still foreign territory. The plumbers (surgeons) and medical technologists, get all the press! Again, thank you both for your continuing help. Keep on keeping on. Love, Roz. RWarriston@AOL.com
 
Jon's note: That's as good as asking for another Proud Papa brag - Linz also placed number 8 in the country on the French language exam!


Sammy, June 6, 2001 - Dear All, After reading many of the posts today I feel compelled to share some of my experiences. I had a TIA a couple of years ago, and have had several angioplasties, various other surgeries and 3 heart attacks. I have also been diagnosed with narcolepsy and cataplexy with other sleep disorders. I was referred to this site by a doc who posts on the sleepnet site.
     This info was shared with me: It isn't uncommon for people who have experienced brain trauma to develop cataplexy. I didn't experience the "classic" excessive daytime sleepiness until after all the trauma and meds.
     After each of my 8 angioplasties I experienced a disrupted sleep cycle as in I could only sleep for about 3 to 4 hours at a time. I am not sure if it is because my brain gets trained to wake up for the vampires who want my blood for testing or just emotional trauma; probably both. This last angioplasty in May I still haven't regained my usual sleep pattern. It was certainly nice to have a name for what I thought everyone did, meaning falling over for no reason (cataplexy). Fine-tuning my medication has been a challenge but then again for me, that's what makes my life worth living, or should I say exciting?! <lol> I love to sleep, I relish sleep, and welcome sleep with eyes closed. I think we just plain need it more than the norm. I get the joy of needing twice as much.
     Also, I am on a second round of niacin therapy to lower my triglycerides. I just wondered if anyone else has had any luck with this. The first round was very successful for me, but I temporarily had to stop because of some side effects. I take 100mg of niacin a day, increasing in increments of 100mg until I reach 1,000mg a day. The side effects are flushing or a hot flash. Although it has been short-lived: anywhere from a few seconds to a few minutes; it can be uncomfortable. Anyway, it has been the only thing that has brought my triglycerides within the normal limits so that I can get a true cholesterol reading. I am interested in anyone else's experience with this. Peace, Sammy. Sammyl@home.com


Tonya Dean, June 6, 2001 - Hi, I have been reading up on all of my meds today and it got me to thinking. I weigh 250 pounds and have had CHF for 18 months. I have not had a Coreg dose increase since January, 2000. I presently take 12.5mg twice a day and tolerate it well. Should I be taking more for my weight? How should I approach this with my cardiologist? My EF last June was 45% to 50% and I go for another echo in a few weeks. Any suggestions would be appreciated. Thanks! Tonya. rntdean@jcn.net


Rick M, June 7, 2001 - Hi, As a veteran of WW II, I am entitled to Veteran's Medical Care which provides for an attractive co-payment plan for prescription drugs ( I think it's too late for most of you to qualify <g>). I have been able to get all of my meds from the VA except Coreg, and since I take two 25mg tablets a day, that adds up. The VA did not recognize Coreg as a "must-have" drug. Today however, during a visit with my VA doctor, I asked if there were any changes in the Coreg situation and I was pleased to discover that just this week, Coreg is now available. He told me that the reason was written up in the current issue of New England Journal of Medicine. After reading the two lead articles, I'm really glad that I've been on it all this time and I think most of you would agree that it sure beats the other tested drug. rearadml@iu.net


Katy, June 7, 2001 - Hello everyone, This is my first time posting since I've just recently been diagnosed with CHF - about 2 weeks ago. My mother actually found this site and told me about it, and I've been reading it daily since I've been home from the hospital. My EF (a term I picked up at this site <g> ) is 20% but I don't have many other symptoms. I get shortness of breath when I do too much but it always goes away if I sit down and relax for a bit.
     I'm 41 with 3 boys (young men?) aged 21, 17 and 14. The hardest thing for them is that there's nothing that shows up physically, nothing they can see so they have a tendancy to not put much stock in the things I say about what's going on. Well, the oldest one mostly, because I can't babysit my grandaughter like I used to, as much as I would like to! I've tried telling him that I have a lot of lifestyle changes that I have to cope with: no more smoking, drinking, eating all the "good" foods, etc,..., but I still feel guilty. Oh well, hopefully he'll get better about it.
     How do you cope with the desire to eat the food that you can't have anymore? I'm talking about a good old-fashioned pig-out! Sometimes I've gotten up and gone for a walk but I can't always do that. Thanks for any tips. kateswan1@home.com


William B's June 7 reply to Amelia's June 6, 2001 - Hi, Coumadin regulation is one of those straw in the hay stack deals. I've been searching for this answer for 4 months. In the question to the heart doc on Jon's web site, he answered my question on this subject. I have been tested every week for awhile and then every other week for awhile, and then the numbers roller-coasted and now I am tested every week again. I have received 3 different answers on this regulation and it seems that this is just the way Coumadin acts, and we will have to put it with it until they bring out something to slow clotting that will be easier to regulate. My doc said to contuine on a straight course and let them regulate the dosage. In other words he said do not to worry that much about the swing in the numbers and they will adjust the dosage. William B.
     PS. I now need that 10 to 12 hours of sleep a night and just seem to barely make it home each day, before bed time. willdet@juno.com


Jon's June 7 reply to William B's June 7, 2001 - Hi, Just a quickie. I took Coumadin for a couple of years. Do you keep your diet consistent on intake of vitamin K-heavy foods from day to day and from week to week? Is your fluid intake consistent? Do you always take your meds at the same time of day, every day? Coumadin levels are harder to maintain in some people than others but it should be possible to stabilize those levels and maintain them after a bit of trial and error if influences such as meds, diet, and CHF, remain consistent. I'd go into detail with my doc if I were you and see what "outside" factors may be influencing your changes in INR. Just my 2¢ worth. Jon.


Karen K's June 7 reply to Jon's June 6, 2001 - Yo, Did I miss something here? I knew your daughter was graduating but don't recall having seen anything about her accomplishments other than what was just posted about being 8th in the country for a French competition. Tres Bien! (I took 4 years of French in high school). Karen. karenk@machlink.com


Jon's June 7 reply to Karen K's June 7, 2001 - Hi Karen, People think I like to brag on my daughter but they have no idea. <g> I really don't inflict much of that on you guys. Here's a short list from memory. My wife has the full list stashed somewhere and she is out of town. The only pre-Senior-year item listed is the poem publication.
     Linz has been published in the Poetry section of The Writer's Slate after winning a national competition. Linz graduated high school Phi Beta Kappa, Cum Laude, as class salutatorian, received the one yearly Justin McElroy award (much coveted because it is voted by peers), a Xerox Award for the Humanities, the Glee Cup, the French Cup, an Ada Brown Scholarship Award for 16 consecutive quarters of High Honors, is a National Merit Finalist, received a 4-year Presidential Scholarship, a Creighton University Scott Scholarship, a Papa John's Scholarship, a Drake University Trustee Scholarship, and caused many teachers and students to break out in tears with her Commencement speech. She had a lead in the school musical her Senior year, was president of the Community Service Club, served on the Honors Council (her school's student "court" which has the power to enforce their rulings), went to State Finals for Cross Country her junior year and managed that team her Senior year. Linz was a Knowledge Bowl participant all year and participated in the regional Knowledge Bowl competition. You don't need to ooh and ah out of politeness - I know I'm just bragging to see the list again myself. ;-) Jon.


Bill B, June 7, 2001 - Howdy y'all, My EF went from about 20% eighteen months ago to 40%, then back to about 25% about eight months ago. Now it is about 30%. The doc had no answer for this. Does anyone else have a similar EF situation?
     I sleep at least 10 hours at night and if I get out in the garden for an hour or two I have to have a 3 to 4 hour nap to function again. Sometimes I feel so lazy, but like you guys say, listen to your body. I hope you get to feeling better Jon. God bless, Bill B. fedx44@yahoo.com


Mary Lou's June 7 reply to Thelma's June 7, 2001 - Hi Thelma, Three years ago at age 59, I was diagnosed with adult onset asthma. Four months later, after what I thought was a bad asthma attack (couldn't breathe and my MDIs did no good), I was taken via ambulance to the ER, diagnosed as having CHF and admitted. The first thing my pulmonary doc said to my husband (I was out like a light from morphine) was "Well, that eliminates Coreg. Anyone with asthma or other lung problems definitely can not take Coreg." Take good care of yourself, Mary Lou. MLBinks@aol.com


Mary Lou's June 7 reply to Joanne's June 4, 2001 - Hi Joanne, Another voice heard from. I need 11+ hours of sleep too. I don't fall asleep until 3 or 4:00 AM; sometimes I don't sleep at all for 24 hours or more. A real contradiction is that I need a lot of sleep but often can't sleep for long periods of time. <g> I'm unable to explain my particular situation. There's no particular change in routine that precedes this. The strange thing is that I require the same 11+ hours either way. Somehow it works for me although I'm sure it's not a healthy way of life. Take care, Mary Lou. MLBinks@aol.com


Luc D, June 7, 2001 - Dear friends, It's me Luc from Belgium. I hope you are all doing very fine. Is there someone who take the medication Cozaar (losartan)? If so, how do you feel with this medication? I don't feel very good with this med - maybe it's too heavy for me. Who can give me some advice?
     My medications are now 240mg Lodixal and 50mg Cozaar daily. I also take CoQ10. Whether that helps me, I don't know either. My ejection fraction is 40%. That's what they say anyway. I hope I get a reply with my question! All the best from Luc here in Belgium. luc.deseins@planetinternet.be


Joanne, June 7, 2001 - Hi, Thanks to everyone who replied to my question about sleep. It seems a broad spectrum of experience in this area is average. Reassuring! For the first time since I started first grade I am allowed to sleep if I feel like it and I'm very appreciative. Look on the bright side as they say. This site is such a blessing. Thank you very much Jon, I'm certain it makes real demands on your energy. Be well all, Joanne. muddyrds@hotmail.com


Alexis, June 7, 2001 - Hi, I've found the best non-drug relief for insomnia to be Books-On-Tape. It's hard for me to read a hard copy book in bed because of my back problems and the fact that my arms go numb from holding the book up. With a book on tape I can plug the little earphones in and turn off the lights. Some of the readers have voices that are so comforting they put me to sleep within minutes. You can order them online at www.booksontape.com. The other good thing is that your bed partner gets some sleep because they can't hear the tape and the lights are off! Asmth@aol.com


Jack D's June 7 reply to Sandy's June 6, 2001 - Hello Sandy, You're right. No doctor in his right mind would agree to you using Hawthorne. Hawthorne does not help heart muscle. Hawthorne is an herb but Hawthorne contains a drug that duplicates the action of other cardiac drugs, some of which you might already be taking. Or you might be taking a drug that would have harmful interaction with Hawthorne. Another important thing to remember is that the drugs you get from the pharmacy come in precisely measured doses but the drugs you ingest from herbs are always different doses. Now if you read that Coreg helps some heart patients but it's not something your doctor has prescribed for you, would you start taking it if you could buy it? Of course not. So why would you start taking a drug like Hawthorne? maddjak@hotmail.com


Jack D's June 7 reply to Salah's June 6, 2001 - Hello Salah, Virtually all CoQ10 is manufactured in Japan, then other companies buy it in bulk and repackage it. The dry version is a yellow powder that tastes nasty. Other versions are mixed with different oils and other goodies. Try the cheapest brand you can find because there is nothing they can do to CoQ10 to make it work better than the plain, old pure powder. Jack. maddjak@hotmail.com


Jack D's June 7 reply to Ginger's June 4, 2001 - Hey Ginger, Dox? You have problems with dox? About the insomnia, you sound like me sometimes. Stay away from the computer, get out of your bed, pile copius amounts of pillows on the couch and form them to your body. Get a really boring book with small print, lie down and do some serious reading. Make sure it's not completely quiet. The drone of an aquarium pump helps. Haven't you noticed that the quiet keeps you awake? Just getting on to the couch helped me get to sleep because part of the problem was worrying about keeping Jill awake and another part was wanting the bed all to myself!
     Oh and bridging? That's a short guitar solo between verses. Or that's connecting the ouputs of two amplifiers to double the watts going to your speakers. maddjak@hotmail.com
 
Jon's note: When you have tinnitus, your world is never quiet! ;-)


Phyllis A's June 8 reply to Joanne's June 4, 2001 - Hi Joanne and Jon, To your question, yes I do need lots of sleep. I'm doing pretty well right now as far as CHF is concerned but I can easily sleep 10 hours at least. I think we really need the rest, it is the symptom of fatigue, I believe. God bless. pa132@juno.com


Phyllis A's June 8 reply to Thelma's June 6, 2001 - Hello Thelma, I also have asthma, diagnosed a year before my diagnosis of CHF because of hypertrophic cardiomyopathy in 1996. I was recently put on a beta-blocker (metoprolol) and at first, my asthma was bad and I was always on steroids, but now I am doing pretty well. God bless. pa132@juno.com


Jon, June 8, 2001 - Hi everyone, For those with asthma, maybe this will be news, maybe not:

Summary - Doxofylline is a new bronchodilator. Like theophylline, it inhibits phosphodiesterase but is safer because it doesn't like adenosine A1 and A2 receptors as much. Doxofylline has been shown to work in both asthma and COPD patients. Unlike other bronchodilators, studies show that this drug is not a stimulant.
 
Details - Methylxanthines reduce airway obstructions, improve blood gas exchange and reduce shortness of breath in asthma and COPD patients. These drugs may provide benefits above and beyond just bronchodilation. Unfortunately, using them can affect the heart, the central nervous system and the intestines. Serious new arrhythmias, aggravating current arrhythmia, and cardiac arrest are of major concern in patients treated with IV methylxanthines.
     It is well known that heart rhythm disturbances happen a lot in patients with chronic bronchitis and emphysema. Heart rhythm disturbances can worsen the condition and outcome of patients with heart disease or PH. Drugs such as theophylline may be dangerous in elderly people or in people with pre-existing heart arrhythmias, coronary artery disease, or heart enlargement because of the direct heart stimulation caused. Inhaler overuse - common in panicking patients during asthma attacks - may raise the risk even more.
     Palpitations and tachycardia are the most common side effects on the heart caused by methylxanthines. Xanthine drugs can cause severe heart arrhythmias, esepcially when given by IV or when given to patients with existing ischemic heart disease or pre-existing arrhythmia. Stimulant effects on the heart caused by methylxanthines may increase mVo2, knocking heart oxygen demand and supply out of whack.
Doxofylline is a new bronchodilator xanthine drug different from theophylline. The cardiac activity of doxofylline is much less than theophylline. Doxofylline's effect on heart rhythm has been studied in several trials
     In 10 patients with COPD, no significant changes were seen in heart rate with doxofylline by IV. In a double-blind randomised cross-over study, 14 patients with COPD and lots of ventricular and supraventricular premature beats took IV doxofylline and premature beats decreased. In another cross-over study done with 10 patients having acute respiratory failure, heart rate increased more with theophylline than with doxofylline. In patients with acute asthma or COPD, giving IV doxofylline lowered heart rate by 17% by end of treatment.
Heart failure - Patients with heart failure often have shortness of breath. In patients with lung congestion, properly managing heart failure may be best for reducing shortness of breath. However, dyspnea may occur whether lungs seem congested or not. Such patients may have some airway impairment along with their CHF. Reducing airway problems in CHF patients may increase their ability to exercise.
     The effect of oral doxofylline on lung tests in class 2 to class 3 CHF patients having COPD was studied in 20 patients. All patients were taking digoxin (Lanoxin), ACE inhibitors and diuretics. After 10 days, lung function tests increased an average of 13%. Heart class improved in 80% of the patients.
     In a double-blind randomised trial, oral doxofylline, theophylline and bamiphylline were given to CHF patients also taking standard CHF meds who had low oxygen saturation. After 10 days treatment, oxygen saturation improved to normal in 58% of patients, regardless of which drug they took. Ability to exercise significantly improved. Comparing heart rate in the 3 groups showed increased heart rate only in theophylline patients. As a result of its safety profile and its ability to relieve shortness of breath, doxofylline may be an alternative choice for patients with airflow limitation owing to heart failure.
 
Title: Doxofylline: A New Generation Xanthine Bronchodilator Devoid of Major Cardiovascular Adverse Effects
Authors: Frank Lloyd Dini, Roberto Cogo.
Source: Current Medical Research and Opinion 16(4):258-268, 2001

Jon.


Mary Lou's June 8 reply to Luc D's June 7, 2001 - Hi Luc, I have taken 50mg Cozaar twice a day for 3 years and have not experienced any ill effect. Fortunately, I have done very well with the meds that were prescribed since the start of my CHF with no changes due to side effects from any of them. Luc, I hope you and your doctor can find the medication and dosage that is just right for you. As Jon has often said, some doctors put too much faith in the numbers and not enough in how a person actually feels. It's possible to have great numbers and still feel tired. Listen to your body, then relay your feelings to your doctor. My best to you Luc, Mary Lou. MLBinks@aol.com


Amelia's June 8 reply to Julie G's June 6, 2001 - Hi Julie and William, Thanks for your input regarding Coumadin. It is a little discouraging considering that my veins are bad and get inflamed. I wish my doctor could put me back on heparin since the longer it takes my blood to thin out the more chance of my heart throwing clots and instead of TIAs I am then at risk of a major stroke. The doctor wants my test result to be no less then 2.5. I am watching very careful what I eat with no green tea, leafy green veggies or lots of vitamin K. I take meds on time. amelias@erols.com


Pat, June 8, 2001 - Hi, I take alprazolam each night and that has helped me sleep. Without it I stay awake until 3:00 or 4:00 AM. dechols@texoma.net


Ruthie A's June 8 reply to Luc D's June 7, 2001 - Hi Luc, I was wondering just today how you were since we haven't heard from you in awhile. I take 50mg Cozaar daily too, but I have no problems with it. That is, I have no problems since my CHF doc had me start taking it at bed time while leaving my other heart meds to be taken during the day. Before, when I took it in the morning, my blood pressure would go up and down like a yo-yo and I would feel terrible. Now that it has been separated from my other meds, I am fine. You don't say what problems you are experiencing with Cozaar, so it is hard to say if we are dealing with the same problems. I hope this little bit helps, Ruthie A. rlaba51@yahoo.com


Fred D's June 8 reply to Mary A's June 4, 2001 - Hi Mary, Hang in there. I am sure that this time you will get your disability. My prayers are with you. As I previously stated, I received my Social Security Disability last month. I am now chasing my employer, who denied my benefits after I was fired in October of 2000. Their reasons were based on a nurse practioner's diagnosis and no contact was made with my cardiologist. I now have to file suit, which really upsets me. Hopefully the disability rating from SSA indicating that I was totally disabled beginning 8/25/00 will have some impact.
     Is anyone else fighting for their company disability? I paid into the plan for 22+ years and was denied and terminated. Go figure. I am very grateful for Social Security and we have decided that we can live with it but I really want my former company to pay. Thanks Jon, for this web site. It is the only contact I have with others like me. deal@midusa.net


Jon's June 8 reply to Fred D's June 8, 2001 - Hi Fred, I have never fought for company disability but have tangled with a company insurer over workman's compensation claims. One serious injury that took me out for 10 months (it was a high-risk job) wound up with them refusing to pay for anything. Well, 5 doctors hired by the employer's insurance company all agreed with me about the injury <g> but the insurer continued to say that all 5 of their own doctors were wrong and refused to cough up a dime until it got to a judge in court. He went slightly nuts over the absurdity of their behavior and awarded me the maximum amount - about 10,000 dollars US more than they would have paid if they had just handled my medical bills. Insurers and re-insurers reflexively fight every employee on every single thing. It's stupid and it's morally repugnant but it's true. Jon.


William B's June 8 reply to Jon's June 7, 2001 - Hi Jon, Been doing the whole 9 yards. My wife got tired of cooking the same thing for 4 or 5 weeks, trying to see what variable was affecting Coumadin levels. During this time my BP would drop 8 to 10 points in the doc's office from sitting to standing, and the drop from morning to late evening was 30 to 40 points. My EF dropped nearly 5 points. I got my digoxin levels up to therapeutic levels. On my last office visit, my BP only dropped one point from sitting to standing. From what my docs say I am probably a good example of decompensated. Now that I seem to be in the therapeutic range on digoxin, my Coumadin levels have varied very little for the last 3 weeks but now edema seems to be creeping up on me for the last 2 weeks and we are increasing my diuretics to offset this. My top range on Coreg is going to be 25mg and I am at 12.5mg now. I am going to find out if this is my doc's limit or mine. I weigh 210 lbs. Even at all of the levels, I am running out of air in the evening so it looks like I will be on another spiral of increasing my drugs to offset this. William B. willdet@juno.com
 
Jon's note: That's the pits. It is true that if your CHF is unstable, it is very hard to get serum levels of anything to stay consistent.


Valerie D, June 8, 2001 - Hi, I posted quite some time ago about walking and received so many great responses. Thank you, it gave me the courage to get on my treadmill and walk. I was diagnosed in March with an EF of 25% but I just had another echo this week and it was 50%. I still feel very tired and somewhat weak. The doctor has taken me off digoxin and spironolactone (Aldactone). He left me on 100mg Toprol and 5mg Altace per day, which, from what I am reading is the best way to go.
     Now my husband has a cold and I am scared silly to catch his cold. The doc thinks I caught a virus which caused my DCM and CHF. How does everyone deal with colds and if you catch one, do you go get antiboitics right away? This web site has been wonderful in helping understand what I have and it is a great support just to read the posts! Valerie. valmac@triton.net


Jon's June 8 reply to Valerie D's June 8, 2001 - Hi Valerie, I just wash my hands at all the appropriate times to avoid catching colds and flu. Antibiotics have no effect on viruses. Just keep in mind that even if you catch the same virus that caused your DCM (if it was really viral) you aren't likely to get more heart damage from it. :-) Jon.


Joanne E's June 8 reply to Katy's June 7, 2001 - Hey Katy, No more old fashioned pig-outs for you! Those days are over, but believe it or not you have a lot to look forward to. I have CHF with a 20% EF and am also a diabetic. I often joke that the only thing I can eat or drink is water, but seriously, it does get very frustrating trying to find something really tasty that you can have enough of and enjoy. It has taken me years to get to a point in life where I feel like I'm somewhat in control of my diet, and I'm still not perfect.
     I have found foods that I like and can eat, and have experimented with them. I'm not a lover of baked fish or chicken but add some green onions, mushrooms, Bell pepper and Mrs. Dash (or any other low sodium seasoning you like) and voila, you have a delicious meal. You can do the same with fish. White Roughy is my favorite and there is no fish taste at all. With either combination you can have some nice fruit and I bet that before long you won't crave all that other unhealthy stuff as often.
     I don't want to go my entire life without a little gravy every now and then, and oh how I crave potato chips! You will learn when you can have a bite or two of your favorite foods on rare occasions. I ate about 10 Fritos the other night but I worried so much about it that it just wasn't worth it. Good luck, Joanne. JavaJo90@aol.com


Alexis, June 8, 2001 - Hi, Just a quick note on Coreg and asthma. I was diagnosed with asthma over 12 years ago. I had very minor symptoms that could be easily controlled with an oral inhaler until about 2 years ago. My doc kept giving me more asthma meds but nothing helped. When my breathing got so difficult I ignored my HMO doc's instructions and went to the ER anyway and I was diagnosed with CHF. My new pulmonary specialist and my new cardiologist working together stopped all my asthma meds and started me on CHF meds, including Coreg. That was 2 months ago. I haven't had any asthma problems and I'm up to 12.5mg Coreg twice a day with no problems. asmth@aol.com


Julie G, June 8, 2001 - Hi, I hope everyone is having a good day. I have a problem I hope someone can help me with. Our insurance doesn't pay very much on meds. Today I had to have just one Rx filled and out of $114.59 total cost, our insuance only paid $12.39. Next week I have to have another one filled and it probably will be the same way. Is there anywhere online or anywhere else where we can get prescription meds at a discount? With only one income and only the government knowing how long it will take to get Disability, I really need some help. Thank you and may God hold you in His palm, Julie G. lgoehl@dstream.net


Wendy B, June 8, 2001 - Hi all, Has anybody else been put on Ambien? I take 5mg a night, and it's saved my life. My doctor said that many CHFers get insomnia and it's the best thing he's found. If I've had a really stressful day, I can take another one for a total of 10mg but I very rarely have to. However, without it I can rarely get more than 3 or 4 hours sleep. boozw@hotmail.com


Joanne E's June 9 reply to Wendy B's June 8, 2001 - Dear Wendy, I was put on Ambien for a short period of time 5 years ago, just after my daughter died due to complications from an auto crash. Of course nothing makes a situation like that better but it really did help me get the sleep I needed. It was a welcome relief and didn't make me groggy. I never felt the need to continue it after a few months and discontinued it easily. However, I still take a Tylenol PM and sleep pretty well with that most of the time. If ever I feel the need I will not hesitate to ask for Ambien again. Joanne E. javajo90@aol.com


Amelia's June 9 reply to Julie G's June 8, 2001 - Hi Julie, I have priced my prescription at 4 different places and found that K-Mart had the lowest price for Coumadin, Vasotec, and amiodarone. Also, if you have a discount store by the name of Price Club or Costco (there might be other names), their price is about half the cost on some meds. For amiodarone 200mg, 60 count, at K-Mart the cost $109 while at Costco it is $55.89. I take 400mg daily so it's a great savings for me. amelias@erols.com


Dorothy P's June 9 reply to Ginger's June 6, 2001 - Hi, I have learned that sleeping with a pillow under my head and a pillow over my head, sort of like an Oreo, allows me to sleep at a much deeper level. Yes, it takes a little while to get used to it but it is well worth it. You will find that there is no breathing difficulty if you make sure the top of your head is covered. For this reason, I wear my hair short and get up every morning and hit the shower. The best part is that light and noise are eliminated or at least minimized. I hope this is helpful. DPowell806@aol.com


Autumn, June 9, 2001 - Hi, I got in to see my cardiologist and had a thallium stress test. Thankfully, it shows no signs of a heart attack, no blockages, and I am not back in CHF. I do have paroxysmal atrial tachycardia, ischemia, PVCs, and supraventricular tachycardia. Sometimes my ventricle fails to contract for 4 or 5 beats. My stroke was brought on by surges in heart rate and blood pressure.
     About the night I thought I was having a heart attack he said I am lucky to be alive. He said I came a hair away from a heart attack or sudden death. I am at continuing risk from sudden death but the degree of risk is determined by many factors such as whether or not I take Calan, caffeine, stress, hot baths, sodium intake, etc. He let it be my choice whether or not I would go back on Calan but said if I wouldn't, I need to quit driving. I went on Calan last night and halfway through the night my carpal tunnel syndrome came back. Calan always does that to me but that can be dealt with. Also, Calan drags me out but I guess I can deal with that. It was nice the 8 months I was off it to feel relatively peppy. I was taken off Calan by another cardilogist because of the CHF risk, even though I had still been on it for a year after I'd developed CHF and had recovered from the CHF. Now I must go back on Calan if I want to spend more time on this beautiful earth, and I do. My cardiologist insists that even though it carries double the risk of CHF compared to other drugs it is still small - 1.5% out of 1000 for other drugs compared to 2.8% for Calan. Also, I had resisted going back on it because it gives me AV Block and bradycardia, and as he says the bradycardia could cause sudden death. His plan is to treat my SVT with Calan and then he will decide if he needs to treat the bradycadia with a pacemaker. If it takes all this to keep me here I guess that's the way it goes.
     Strangely, I was rather relieved after talking to him. It is easier to deal with the straight truth than wondering what is going on. Oh, he also said that even mild dehydration can set off SVT. My cardiologist wants me to move to the city so I can access good medical care. I sure wish I could. Actually, if I could afford to move, I'd move somewhere with low humidity like some of you have. Tell me of some good places and if my husband ends up leaving his job in the next year or so due to his injury, I'll have some ideas on where we might go. AmberDawn-Blzn@webtv.net


Jon's June 9 reply to Autumn's June 9, 2001 - Hi Autumn, If you have no blockages, are you sure you have ischemia? Are you sure your docs are telling you the correct findings? Some of the things you quote him as saying make very little sense to me. I am surprised he does not recommend that you take amlodipine rather than verapamil, since it is thought to be less harmful to CHFers than other class 4 anti-arrhythmics. What does your CHF specialist say about the electrophysiologist's therapy plans?
     Also, if you are at such high risk for sudden death from arrhythmia that you must take a drug not recommended for CHFers to take, shouldn't you be considered for an ICD implant, EPS, or pacemaker, as soon as possible? I'm in the dark as to your specific situation and I don't research arrhythmia all that much, so these are just general questions I would ask anyone in the same general "boat."Jon.


Sammy L's June 9 reply to Julie G's June 8, 2001 - Hi, There is a web site called www.themedicineprogram.com. Of course, there are a few qualifiers but maybe it will work for you. I currently take over 30 different meds a day. I also am lucky enough that my docs give me samples of pretty much everything. My cardiologist also provides any meds when I need them and can't afford to buy them, everything from aspirin to plavix. Asking for the stuff has always been the key to accessing information and obtaining freebies. We also have many social service groups and non-profit groups that provide meds and info. Look in your local yellow pages.
     I have tried to donate the meds that I no longer can use for whatever reason, but because of health laws, I can't seem to put my often expensive leftovers to good use. That part is maddening. I understand why I can't return them or donate them, but still it's frustrating. I sure have been in a position where I only needed 2 or 3 doses of something to even see if it would be effective and just knowing that for folks who need meds but can't afford them, doing my part just seems sensible. Peace, and sleep well, Sammy. Sammyl@home.com
 
Jon's note: See the Links page for more Rx financial help Urls


Maxine S, June 9, 2001 - Hi, On May 25 I posted information about an implant I was hoping to qualify for. I did qualify and had the implant last Tuesday, June 5. I was lucky, since the study was soon to close but maybe that means it will soon have FDA approval. I still have not heard from anyone here who may have had this also. Besides St. Luke's Medical Center in Milwaukee, I think Rush Presbyterian in Chicago has been in this study. It offers a lot of hope, even for those waiting for a transplant. jusmax@milwpc.com


Robin L's June 9 reply to Sammy's June 6, 2001 - Hi all, Sammy, I have the same problems with hypolipidemia. My HDL is low, my LDL seems normal, and my triglycerides are out of this world at 699. I was put on a statin med about a year ago but had very bad side effects from it. My cardiologist took me off it without trying anything else. My new CHF doc just started me on 500mg niacin for one week, then up it to 1000mg after that. I have found through some resurch that some beta-blockers increase triglycerides and decrease HDL but that total cholesterol is in the normal range; strange but true for me. I will let you know if my levels come down. I also get the flushing with niacin, which is why this med is supposed to be taken at bed time with a light snack.
     As for sleep, boy, do I need a lot of it?! It bothers me and my husband. I have noticed that the past couple of weeks my hubby is letting me take my naps without interuption, protecting me in a way. I know this is an answer to a prayer but I wonder if he has been reading up on this illness or if it the result of the attention I am getting from my new CHF doc, which brings me to my update.
     You all may remember that I posted for opinions on whether I should request an ICD for my v-tach. Through that post I got a reply from a wonderful person close to my area who recommended a CHF doctor at a major medical hospital near me. I cannot believe the level of care you get from people who truly understand CHF. Not one person that I came into contact with made mention that my EF was in the upper 40s so I should be feeling good. I am scheduled for a bubble echo to locate a septal defect, a cardiopulmonary stress test to check the level of oxygen getting to my poor hurting legs, and a right heart cath because he thinks from my previous test results showing structual damage to my heart and my symptoms that I may be developing pulmonary hypertension, which is a complication of untreated septal defects. Whatever it is, he will get to the bottom of it, that is for sure. They are very proactive in diagnosing and caring for their patients. What shocked me the most was the reccomendation to research and find out all I can about everything we discuss! They are putting together a folder for me of all my records!
     I want to tell every one out there who might think that the difference between seeing a cardiologist and going to a CHF clinic couldn't be that big a difference (which is what I thought) that the difference is huge! They know all of it, they know why I am tired, they know why I hurt, they asked me questions like how much house work I can do now compared to 5 years ago, 3 years ago, and one year ago. Right off, they were shocked that an electrophysiologist would do an ablation without first locating and finding out about the defect in my heart. No amount of ablations will fix the electrical problem with such a defect because it will always have to re-route itself around the defected area, if that is where the problem is. I am so thankful to everyone who replied to my post, and to you Jon, for keeping this site going for all of us.
     I am praying that I don't have PH and I am just the most out of shape person they've ever seen. A girl can hope, you know! <g> Blessings to all and I will let you know how all these tests turn out. Robin Lynn, age 37, CHF, IDCM. heartful99@hotmail.com


Christy P's June 9 reply to Amelia's June 8, 2001 - Hiya Amelia, Jon, and all, I am also a Coumadin patient that has a very difficult time getting my INR regulated between 2 and 3. Amelia, I was able to go to a CHF clinic to get my INR tested from a finger prick of blood. I continued to have my blood drawn at 3-month intervals but didn't need to have it drawn weekly. You may want to call around and see if there is a clinic near you that has this equipment. My doctor is in the process of asking my insurance company to purchase one for me at home, since I'll be taking Coumadin for the the rest of my life, which is hopefully a very long time!
     Also, beware of things like garlic, which can "thin" the blood. I found that the difference between boiling my spinach and steaming my spinach was dramatic! There wasn't much vitamin K left in boiled spinach. Just as a side note, thought I'd pass this story to you. My INR was once a whooping 5.1 when I was tested so they told me to change my Coumadin and come back in 3 days. When it was retested it was 1.7. I had gone home and eaten a large salad every day and continued to take a reduced amount of Coumadin. I was astonished. This truly showed me that everybody's reaction is different, and Coumadin can be very sensitive to some foods. I hope you're able to regulate it soonest, Christy. breezip@hotmail.com
 
Jon's note: Beware of changing vitamin E intake as well.


Michael, June 9, 2001 - Hi, I am going in for a biopsy on my liver in a couple of weeks and am wondering if anyone else has been through this procedure. I would like to know what kind of pain and recuperation time I should expect. The only other procedure I've ever had for comparison is the angiogram I had while in the hospital after my initial diagnosis. It left me very sore for a couple of days but nothing else. I am hoping this is a similar procedure since I don't want to miss any more work. Any feedback will be greatly appreciated. Thanx! anthrophobe@usa.net


Thelma, June 9, 2001 - Hi, Thanks to all on the your input about Coreg and asthma. Jon, I discussed with my CHF doc the fact that Coreg was contraindicated in patients who have asthma. He wanted to go ahead anyway because the benefits of Coreg are so great. He does not want to decrease my dose. I'm just wondering if this is new thinking amongst CHF specialists. You are correct about many asthma meds in relation to heart arrhythmias. That is why the thinking now is just steroid inhalers (and oral steroids). My understanding is that theophylline has gone out the window, so to speak, although I don't know much about doxofylline. I know this isn't an asthma board but it is so important that our lung function is optimal with CHF. Otherwise we can get in trouble very quickly. I just wish I knew the correct combo of meds to optimize both my lung and heart function.
     Also, regarding sleep meds. I had a brief period of some sleep disturbances and tried Sonata. It is very short-acting and didn't make me groggy in the morning. I liked it. Benadryl knocks me out and prolonged use can make some people depressed. Someone mentioned alprazolam (also known as Xanax). This is wonderful to help one sleep, and is used for anxiety but remember that it is a benzodiazepine which can become addictive. The problem when I have taken it is that I'm groggy for over 12 hours and can't seem to get out of bed.
     Being an RN with CHF, I hope I can contribute more to the board in the near future. I've felt badly when there have been so many messages I'd like to comment on but have been too tired but of course, I know you understand. Take care, Thelma. Tcull@prodigy.net


Jon's June 9 reply to Thelma's June 9, 2001 - Hi Thelma, I have never heard of benadryl causing depression. My doctors have all told me that it does not cause tolerance, that it has no significant side effects (clinically), and that more than 50mg at a time is wasted since it has little added effect after that dose. I have used it nightly for several years. I have also used Restoril and Ambien as well as an anti-depressant drug. Ambien was the only Rx drug that worked for me. Unfortunately, I develop tolerance within 2 doses. Bummer.
     Doxofylline is so new I don't think it is approved by the FDA yet so it's probably not out the window quite yet. <g>. Jon.


Lisa C, June 9, 2001 - Hi, I am new to the message board. I was diagnosed with CHF in August, 1999. I have come along way. The thing that puzzles me is that I can go to the gym and work out for an hour but if I hang out clothes, wash dishes or braid my daughter's hair, I am completely drained. My back cramps up and my chest gets tight and my fingers get numb on my left hand. Are there any of you that experience this? coleman5@ivillage.com


Ruthie A's June 9 reply to Julie G's June 8, 2001 - Hi Julie, I don't have insurance so I sure can't afford my meds. I asked my cardiologist and PCP if they had forms from the pharmaceutical companies to get meds at discount or free. Most of my meds are covered by such programs. It just needs a bit of paperwork, proof of financial need, and the doctor's signature. The worst that can happen is the companies deny your request and then you haven't lost anything but a bit of time. It's worth a try at least. If you have any questions, feel free to e-mail me, Ruthie A. rlaba51@yahoo.com


Thelma's June 11reply to Jon's June 9, 2001 - Dear Jon, Working night shifts in the past, I did use Benadryl to help me sleep during the day. It's sure good in a pinch. I read one time that chronic use may cause depression in some people, so I refrained from using it too much. You're right, I don't think one builds up a tolerance to it. As far as Ambien, when I was in the hospital when I was first diagnosed with DCM, they gave me Ambien at night to sleep. It worked great. It sure works fast! I do like Sonata however, just because it's milder and shorter acting although it may not work for everyone. The best thing I have done is meditation/deep relaxation to help me get to sleep. I'll admit though, I really don't have much of a sleep problem anymore, so I am lucky. Thelma. Tcull@prodigy.net


Wendy B, June 11, 2001 - Hey Jon, I just noticed in one of your recipes you mention broccoli. My doctor tells me that because of the Coumadin, broccoli, spinach and Brussels Sprouts are a definite no-no. This is a bore because although I can do without broccoli, I adore spinach and Brussels Sprouts. How do you get around the broccoli/vitamin K problem? This is something I don't want to cheat on because I just got the results of my echo and he says I'm in great shape! My heart seems to be functioning better and may continue to do so as long as I take my meds and eat right (and continue not drinking). Isn't it odd that things which are so extremely healthy for most people are forbidden to us? boozw@hotmail.com


Jon's June 11 reply to Wendy B's June 11, 2001 - Hi Wendy, Your doctor is wrong. Broccoli is not a no-no. However, you must keep your intake of such foods consistent from week to week so your INR stays in the appropriate range. If you eat roughly the same amounts of these foods each week, it has no effect on your INR, and thus causes no problems. Marc Silver answered such a question recently to this effect.
     A quick reminder to everyone who wants to find a particular topic on this site. When the site search engine sends you to a page, use the "Find" function of your web browser to find the exact line of the page. It's probably under "Edit" on the menu at the top of your browser wondow. Just type in the word or phrase you are looking for and tell it to find it for you. ;-) Jon.


Jan, June 11, 2001 - Hi everyone, I just want to say to everyone that I get so much from this site. It can make or break my day sometimes from "Oh, I have hope" to "Oh, I'm just going to get really sick." Anyway, I just want to remind us all (very much including myself) to say thank you to our significant others. I am relatively newly diagnosed and relatively healthy at class 2 but I gotta tell y'all, my husband is the "bomb," as they say. He is helping me raise a 2 and 3 year old, and looking at a possible life without me or at best with me not doing my part. However, he does it without the least complaint or spoken worry, and I have a feeling a lot of you have the same situation.
     I know a lot of you give daily thanks to God but I want you to think about the earthly folks in your lives too. I can't help but think there's lots of strong, uncomplaining people out there who are dealing with the illness and possible loss of their "one and only" and becoming a single parent to boot. I'm probably not saying this the way I wish I could but I want you all to just go to whoever is helping you through this and say thanks, with a smile, and nothing else.
     Thanks for the opportunity to say this and I hope a lot of you will think about it if you haven't already. Those who will eventually be left behind have a lot more to handle than those who might leave before their time. Say your thanks. therowlands@att.net


Ginger's June 11 reply to Robin's June 9, 2001 - Hi Robin, Could you please tell me a little bit about the aching pain in your legs? It is someting that very much interests me. I have it and am not so sure it is all due to my back problems so I would like to hear what yours feels like, when you have it the most, and things like that, if you don't mind. Hugs and prayers, Ginger. angelgin@bellsouth.net


Autumn's June 11 reply to Jon's June 9, 2001 - Hi Jon, I had some of the same questions. I asked my doctor how I could have ischemia if I don't have blockages. He said ischemia is caused from lack of blood flow from whatever cause. He said that when I'd stood up from my bath, I'd gone into hypotension and as a reaction, my heart went into tachycardia in an effort to supply blood but at the pace it was going it wasn't supplying the needed blood and oxygen so ischemia resulted. He said just as a marathon runner is destroying their muscles after about 22 miles, so my heart is being damaged as a result of all the bouts of SVT. As to medication I can't take beta-blockers or ACE inhibitors. He did mention that he gives other patients Norvasc (amlodipine) but said that since I had been on Calan before and he knew I did well on it he decided to put me on that again. Is there much of a difference in the effects of the two calcium channel blockers? My cardiologist will be referring me to the electrophysiologist in a month if he decides I need to get a pacemaker.
     My CHF doc says he often uses a anti-arrhythmic drug to control the arrhythmia and blood pressure in patients and then adds a pacemaker to control the bradycardia. I understand using the least necessary medical care but I have wondered before why they haven't paced me when my heart has stopped several times during surgeries only to restart before they had the chance to used the paddles on me. To me everything is saying I need to be paced and I don't understand the wait when I am at risk for SCD. I think I have the best cardiologist in the city I go to but he is not what I think you mean by a CHF specialist, although he does teach as well as practice. I cannot get permission from my insurance carrier to go to a place like Cleveland Clinic as long as there is a cardiologist here in our plan.
     It has been hard for me to follow information well since my little stroke so I got permission to tape the session with my doctor. I have to work a lot harder to uderstand this medical stuff and how to deal with it and at times I am frustrated and discouraged. Having this site to come to is truly a blessing. AmberDawn-Blzn@webtv.net


Jon's Jun 11 reply to Autumn's June 11, 2001 - Hi Autumn, If your arrhythmia is so bad that it is actually causing long-term damage, it is just plain wrong for your doctor to not immediately give you a pacemaker - especially since he thinks one will be necessary anyway to counter the effects of anti-arrhythmia drugs! I consider his marathon analogy totally inaccurate, although severe, long-term tachycardia could definitely deprive the heart of blood flow. Bluntly, I question this guy's judgment - if all the info I am hearing is accurate. Sometimes relaying information from a third party unintentionally changes that information, especially when recall has been damaged as yours has. That's a real bummer - like you didn't have enough problems already. :-(
     The calcium channel blocker question is one of mortality. Other than amlodipine, CCBs have been shown to increase CHF episodes by 25%, and to increase death risk among those with heart failure. Have you considered the old standby of hydralazine and isosorbide dinitrite? This may be the drug combination of choice for CHFers who cannot take ACE inhibitors and beta-blockers, a very small patient population with which few non-CHF specialists have any experience. Jon.


Dorothy, June 11, 2001 - Dear Friends, For what it is worth, this is my experience with asthma. I had never had asthma but my son does and I am familiar with the symptoms. Last November I woke up wheezing. I was amazed that it was so noisy! My family doc diagnosed it as GERD (reflux) and prescribed an inhaler. He also had me raise the head of my bed about 6 inches. In April I woke up with swollen ankles and had no idea what was going on. After spending 5 days in the hospital, I was diagnosed with CHF. It is my opinion that GERD was not the proper diagnosis. I have had no reflux problems and in fact, do not use the GERD medication nor do I need an inhaler since going on CHF meds.
     I require hours and hours of sleep too. Best wishes to all. DPowell806@aol.com


Ginger, June 12, 2001 - Hiya's, I am asking you all to remember Sarah F and Joy W in your prayers. They are both in the hospital again. Sarah had another mild heart attack and Joy got an abcess at the site of her Hickman catheter and they had to remove it so she has to stay in the hospital until they put a new line in for her meds and nourishment. Please keep them in your prayers. Thanks. Stay well y'all.
     PS. That ever loving insomnia is still alive and well. :-( Hugs and prayers, Ginger. angelgin@bellsouth.net


Robin L's June 12 reply to Ginger's June 11, 2001 - Hi Ginger and all, My leg pain has seemed to stump my local docs for the past couple of years. I have read countless other posts about it and just decided that it is something I have to live with. The only difference is that I noticed that the others seem to be able to exersise, at least some. My legs just give out and no matter how much I try, I can't seem to build them up. The type of pain is not the kind like when you exersise for the first time. It's more like a feeling that they have been crushed in the lower legs and feet. The muscles in my thighs hurt so badly that all I can do is sit down. When I went to work at the preschool I thought I would get stronger over time and then be able to pick up and have more tolerance. It just never happened. The CHF doc mentioned not getting enough oxygen. Some days I can do more than others. They feel tired all the time. It is really bumming me out. They get tired and weak when standing in one place but walking really kills me. Good luck to you and to all of you, Robin Lynn. heartful99@hotmail.com


Marc Schlotthauer, June 12, 2001 - Hello Everyone, It's been awhile since I've posted here, since I've been spending most of my online time with the ICD folks at The Zapper but as fate would have it, my CHF seems to be rearing its ugly head and I'm back having problems again. I'm hoping maybe some of you have experienced what I'm dealing with and might have some insight for me, or at least some suggestions for my cardiologists.
     Three months ago, I was doing as well as I have since I was diagnosed with CHF (dilated cardiomyopathy) in October of 1995. My EF was 46 according to a MUGA scan done March 15, 2001, and I was walking briskly 30 minutes a day. My meds were (and are) 100mg total Coreg, 40mg Zestril, and Coumadin for some clotting issues around my defibrillator.
     On May 15, I received 2 shocks from my ICD and went through about 48 hours of increased rhythm activity. Then, starting May 18 (and continuing today), I have been experiencing increased CHF, with shortness of breath, dizzy spells, and most of all, I can't walk 100 yards without being dog-tired.
     There has been no change in my meds. I had another MUGA done last week and my EF came back at 40% so considering the margin of error, there has beeen no significant change. I'm completely baffled. Has anyone else had a similar experience? Thoughts I've had include:

  1. Coreg becoming ineffective. I've been taking it for 5 to 6 years now and since there is no long-term data, maybe I'm at the end of the Coreg line.
  2. Heart damaged from shocks. I kind of doubt it, especially considering my recent MUGA but the last round of shocks pretty much coincided with my symptoms onset.

I wore a Holter for 24 hours 2 weeks ago and it didn't show rhythms above and beyond my normal routine. My CHF cardiologists seem to think it is a rhythm issue and my rhythm doctors seem to think it is a CHF issue. Trying to be as proactive as possible, I have finally gone on a sodium-restrictive (1,000-1,500 daily) and fluid restrictive (64 oz) diet. I feel much better but still cannot walk anywhere near like I could several weeks ago.
     I would appreciate any feedback you may have. Thanks, and God bless you guys. Marc Schlotthauer. hawtin47@wvi.com


Tom, June 12, 2001 - Hi, After another small MI (my fourth), my local cardiologist started me on 75mg Plavix 75 every morning. I am still taking one baby aspirin a day also. Could anyone tell me of their experience on Plavix? I have read the info on the Plavix website but I like feedback from people who are actually taking the medication. I'll see my CHF specialist at the Cleveland Clinic next month and will discuss the medication with him. Thanks, Tom. tteeters@neo.rr.com


Mary A, June 12, 2001 - Hi all, Today is my Disability hearing. I am very anxious but also cautiously optimistic. Please pray for me. I just wish I didn't have to wait even longer for a decision. kactus@voyager.net


Carol B's June 12 reply to Julie G's June 8, 2001 - Dear Julie, I would also like to suggest that you talk to your doc about your lack of insurance help. Perhaps there are cheaper alternatives. As an example, I asked my CHF doctor why I wasn't on Coreg like many of the people on this site. She explained that Coreg was expensive and she chose to use meds that are less expensive because many of her patients have little or no insurance so I am taking atenolol. I hope this might help. My prayers are with everyone, Carol B. cabwojo@adelphia.net


Sammy L, June 12, 2001 - Hi everyone, Okay, so I feel dumb asking these questions but having had a small stroke, I get confused easily. Mix that with the symptoms from narcolepsy and disease in my brain and well, here it is anyway. I have been diagnosed with cardiovascular disease and coronary artery disease. Are they different? Does this mean I have CHF also? I have read posts that people go in and out of CHF. How is this so? Is that determined by the amount of fluid around one's heart?
     Here is this list the docs have diagnosed me with. I see my docs again in a couple of weeks and plan to ask them also but you guys seem to know. I have cardiovascular disease, coronary artery disease, cerebral vascular disease, intermittent claudication (is this the same as peripheral artery disease?); then a whole array of sleep disorders - narcolepsy, cataplexy, sleep paralysis, restless leg syndrome, hypnogogic hallucinations; Migraines (I think the migraines are from my brain trying to decide what to complain about next! <g>). The migraines actually were a result of having laid on the table a very long time when I had my seventh angioplasty.
     Anyway, I hope I don't appear too dumb. Recently my doctor told me that my lungs sounded worse (I had bronchitis in April). The last 2 years I have struggled with shortness of breath. She also said my heart murmur was louder so I am having another echocardiogram this Friday. Frankly, I am a little scared for more bad news.
     Does anyone else experience their heart racing? Sometimes mine takes off for a short period but I feel like I have run a marathon after it slows down. It goes so fast I can't count it. I have had multiple tests and monitors but it never seems to happen when I am on these things. It occurs most often when I am lying down to rest or for a night's sleep. Is that strange? I struggle to get my heart rate up when I exercise though. The docs believe me but can't seem to find the cause. Thanks in advance. Peace and sleep well, Sammy. SammyL@home.com


Bill D's June 12 reply to Tom's June 12, 2001 - Hi Tom, I will be interested in replies about Plavix. They said one 325mg aspirin inhibits 19 events in a thousand people, while one 75mg Plavix inhibits 24 events in a thosand people. The Plavix folks are saying that's 26% improvement. You have to appreciate their math! The FDA people never approved aspirin or the dose. In that Plavix costs $3.14 a pill and aspirin costs 5 cents, I'll think I will take more aspirin to level the playing field. Besides, I can't afford $94 in a month. I'm already paying $400 a month for meds! Bill D. billdog11@earthlink.net


Joanne E's June 12 reply to Robin L's June 12, 2001 - Hi Robin, Have you had any tests on your lower extremities? You really need to express to your doc that you are have real pain in those areas. I started having that kind of pain in 1993 and just 2 weeks ago had stents put in both legs because of blockage. One leg was severe and I'm glad I didn't wait any longer to have it done. Strangely enough, that pain has been less in the past 3 years and I have no answer as to why but I'm glad I still pressed to have the situation looked at and got something done. The procedure is relatively painless and in some cases you are home the same day. Your doc may want you to stay overnight, as did mine. I know how you are feeling and my prayers are with you. God bless and good luck, Joanne E. JavaJo90@aol.com


Sammy L's June 12 reply to Tom's June 12, 2001 - Hi Tom, I have taken Plavix off and on for the last 2 years. This has always been a short treatment med for me just prior to - and for 4 weeks after - an angioplasty, of which I have had 8. As you probably know, it is a blood thinner. I also continue my regular aspirin dose and other meds while on it. Some of the side effects I have experienced are easy bruising and lack of clotting if I cut myself. The most bothersome for me is my skin sensitivity. I experience a lot of pain sensation if something touches me. My fingernails bruise easily and are very thin on this stuff. My hair has even fallen out in clumps. My gums bleed easily. It is all short-lived and goes away shortly after I stop taking the stuff, usually within 2 weeks. Peace and sleep well, Sammy. SammyL@home.com


Sammy L's June 12 reply to Robin L's June 12, 2001 - Hi Robin, I just wanted to share with you that I have intermittent claudication, which has a lot of leg pain with it. My doc gave me Pletal for this. I take 100mg BID for it. About a year ago I decided to stop taking the Pletal, thinking it wasn't doing anything for me because my legs still hurt like the dickens. Well, within a month I was back on it. I actually begged the doc for more because it had taken so long to build up in my system I didn't even know it was really working for me.
     Anyway, I just wanted to share that with you. The best part is I don't have to take as much Darvocet anymore. I still take a Darvocet before I start my walk but I don't have to eat the stuff like jelly beans anymore. Peace and sleep well, Sammy. SammyL@home.com


Patrick M, June 12, 2001 - Hi, I finally got my SSD approved after 14 months and a lawyer's help. I am now applying for Medi-cal, which I will use until the time comes when I will be able to qualify for Medicare.
     Will I have to pay any type of a monthly premium, since I will be receiving SSD? I will be getting only $1149 a month and it will take every bit of it to pay my house payment, car insurance, food, etc,..., so if I have to pay a premium I won't make it. If there is anyone living in California who knows the answer to this? NarleyHarleyGuy@webtv.net


Amelia's June 12 reply to Tom's June 12, 2001 - Hi Tom, I was given 75mg Plavix while in the hospital after having a TIA. This was continued with a baby aspirin. My doctor said he doesn't pay attention to the instructions not to take aspirin with it. I was started on Plavix till further tests were taken. As you probably found out, Plavix is an anti-platelet drug to prevent cells from clumping together and forming blood clots, taken to prevent heart attacks and TIAs. After going into a-fib and having a cath and a TEE done, I was put on Coumadin.
     I did not have problems with Plavix and was on it for 30 days. You do not have to have your blood checked as often as with Coumadin. All drugs that we take can have terrible side effects and I am careful not to let my imagination run wild. Otherwise I would not take them. If I had a problem, off to the doc's office and many times the medication would be changed. Good luck. amelias@erols.com


Julie G, June 12, 2001 - Hi, I just got home from my cardiologist and he finally gave me some good news. My stress test showed no blockages so I don't have to worry about surgery, which is a big load off my mind. He is also upping my dose of Coreg this week to 12.5mg BID. In 2 weeks if I do well on that he is going to up it to 25mg BID. He could not understand why my PCP had not already done that. He also changed my Capotril to Zestril and instead of taking 37.5mg 3 times a day I only am going to take 40mg once a day, but I have to wait a week because of the Coreg change, but that's okay. He also changed my aspirin to a baby aspirin. He said again, "I don't understand why your PCP didn't do this" and I said I didn't know but that I had already fired her. He just laughed. I hope everyone is having a good day. May God hold all of you in His palm, Julie G. lgoehl@dstream.net


Ginger's June 13 reply to Robin L's June 12, 2001 - Hi, Thank you for sharing that with me. That is about how mine feel, except it's all the way down my leg, in the backs of them. They feel lile I ran a marathon all the time. Anyhow, my mom hd a femoral artery bypass some years back for leg pain when she wasn't getting enough circulation in her legs but she wasn't so lucky because there wasn't a big enough difference in how she felt afterwards to make it worth it. I don't know about mine. My back doc seems to think it is all because of the pinched nerves at the base of my spine. I have not talked to my cardio doc about it yet but think I will mention it and see what he says. My only problem with him is that he said, "Your EF is 40, you don't have CAD or at least didn't have any blocked heart arteries 3 1/2 years ago when you had a heart cath so it's probably your back." I mentioned a while back I need to change to a CHF specialist but I just haven't had the chance. Now I need to make the time to do it. I hope everyone is doing okay with this heat. It's in the 90s here during the day. Makes my gardening quiet a task. Stay well, y'all. Hugs, Ginger. angelgin@bellsouth.net


Jim, June 13, 2001 - Hello, First off let me say I love this site. I was diagnosed with CHF in May. My doc put me on Coreg, Lasix, potassium, digoxin, and accupril. I had a bunch of tests. My next appointment is in November. Is this normal? Also, what and how much exercise can I do? Can I still have sex? And, of course, my employer fired me for health reasons. What options are available for finacial and medical help as well as life insurance? Thanks, Jim. jamburns@msn.com


Claire E, June 13, 2001 - Greetings and good heart days to all of you, I just wanted to put in my two cents about our terrible sleep situations. I have tremendous trouble sleeping too. To make things harder, my 5 year old daughter has ADHD and quite a few other handicaps. She requires medication that helps her focus but makes it very difficult for her to sleep at night. She is up and down all night but she can't help it. I take 5-10mg Ambien almost every night and it is a life saver. I arouse easily when my daughter comes out to the couch to get me. I start in bed but migrate out to the couch so I don't bother hubby. Besides, I need to be really propped up. Ambien lets me tend to Jessica and then fall back to sleep in a few minutes instead of lying there for an hour hoping sleep will find me again. I am up and down quite a few times during the night and this is the best solution I have found. I have been on it for nearly 2 years and feel no need to increase it.
     Every few weeks I go off it and take benadryl for 5 days or so. I don't sleep as well for those 5 days but I think it's a good idea. As far as my sleep requirements, I really need to get 10 hours a day to feel my best but this rarely happens. I rest during the day whenever I can and try to conserve my energy. I am just so slow with my household chores that there aren't enough hours in a day. Hubby is a prince and does whatever he can but he works many extra hours to help make ends meet. I'm sure you can all relate. Besides, who wants a really clean house anyway? That's boring, right?! Peace and love, Claire E. Weezey62@aol.com


Robin L, June 13, 2001 - Hey Plavix people, After I had my cath in March of 1999 my cardiologist put me on Plavix due to the arrhythmias causing some pooling of blood in my heart during the little pauses. Well, I didn't tolorate that drug very well at all! I noticed from the second day that I was seeing some large bubbles that blocked my vision. On the fourth day of the med, I had some sharp pains in my head but didn't think much of it. I was helping my daughter get dressed and while I was bent over the bubbles blocked almost all of my vision. All I could see was my daughter's eyes. Then came what felt like a gunshot (or what that must feel like) to my head! I covered my head with my pillow and sceamed while my mother in law got in touch with my doctor and the pharmacy. Needless to say, I can't take that little pill. The thing is that I still get that sharp pain in my head, in the same place ever since then. This is something else I need to discuss with my new doctor.
     Thanks for all the replies about leg pain. My doctor is well aware of it and said he would find out what was going on with them. I forgot to mention before, that on occasion they turn a reddish, purple color from just above the ankle to my feet. It also stays bluish purple on the inside of my knees. God's blessing to all, Robin L. heartful99@hotmail.com


Tony T's June 13 reply to Marc Schlotthauer's June 12, 2001 - Hi Marc, I'm sorry to hear about your increased symptoms. With my CHF, a-fib and tachycardias, I have frequently been fighting increased arrhythmias, with their related increased symptoms of sweating, weakness, and shortness of breath.
     I have found that my increased symptoms are primarily effected by changes in the environment such as increased pollutions and pollens. I have also had to separate my medicines by hours. Just recently I have found out that my Accupril (ACE inhibitor) is much more effective at lowering my blood pressure when I take it at least 2 hours away from my Verapamil and my Lanoxin. I didn't think Accupril worked for me at all but now it is really helping.
     I've also found that certain dyes and chemicals will cause my heart to go nuts for long periods of time, such as those in clothing, sheets, carbonless paper, old books, or dust. I've also found that certain foods eaten too close to taking certain meds will cause my heart to suffer an arrhythmia and continue for hours to days. For me, the best help at controlling my arrhythmias was to avoid those chemicals and dyes that effect me most and take the correct doses of the correct medicine on the correct schedule, with significant separation in the doses and with the foods that interact with those meds.
     Another thing I do, which is not suited for many others, is to take my blood pressure an average of 9 times per day. With the readings, I also write down what I have been doing during the day. It has been a tremendous help at pinpointing my problems and for finding out what medicines help me the most, and has resulted in lowering my blood pressure and decreasing my other symptoms. I hope by this time you have already solved your arrhythmia problems and can ignore what I've written. Best of luck, Tony. t0nyt@yahoo.com


Fred D's June 13 reply to Jim's June 13, 2001 - Hi, I do not think that an appointment in November is correct for your condition. When I was intially diagnosed it seemed like I was seeing someone every other day. It then went to 2 weeks, 4 weeks, 6 weeks, and after my last visit I am now on a 2 month rotation. What about your meds? It takes time to get them straightened out, especially the dosage. You did not mention what meds you are taking or the level of your CHF; they all will have something to do with what you can do. I am a class 3, and love and nitro go hand in hand.
     In regard to your termination, what were you doing and what were you not able to do? What did the doc say in regard to your limitations. Did you have disability coverage at your old job? Have you applied for Social Security Disability payments? Doing all the stuff that you have to do with this condition pretty much becomes a full-time job, so get prepared. I think you may need to see another doctor, a CHF specialist if possible. If you have CHF, you will need to change your life. Read what Jon says on this web site. deal@midusa.net


Tracey C, June 13, 2001 - Hi everyone, I have a couple of questions. Has anyone had a problem with their deodorant not working as well since being on meds? Before, any old deodorant was fine but now nothing seems to work. Thank goodness for anonymity.
     I went for my 2 months off meds checkup yesterday. Nothing has changed. My RV has actually shrunk a bit and my EF remains at 50 to 55%. Has anyone had a baby after learning about their diagnosis? My cardiologist yesterday again reiterated that he thinks it would be a realistic option but count on bed rest since I'll be off the ACE inhibitor during pregnancy. He also says I don't have any higher chance of developing PPCM just because I already have CM. My gyno says no way, no how, you'll never survive it. My cardiologist believes that my gyno is afraid of a lawsuit should I die but I truly don't know who to believe. I would never become pregnant if there was a higher than normal chance I wouldn't make it. It's not fair to my husband or the baby. We don't have kids yet and had pretty much accepted that we will have to adopt but my cardiologist is so insistent that it's starting to give us hope again. Any input would be greatly appreciated. Thanks, Tracey C. 2tcollins@home.com


Jon's June 13 reply to Tracey C's June 13, 2001 - Hi Tracey, My personal opinion is that it's nuts, but people survive nutty going-ons all the time. <g> Here's some rather more "official" information than that, though:

Source: N Engl J Med 2001 May 24;344(21):1567-71
Comment in: N Engl J Med. 2001 May 24;344(21):1629-30
Title: Maternal and fetal outcomes of subsequent pregnancies in women with peripartum cardiomyopathy.
Authors: Elkayam U, Tummala PP, Rao K, Akhter MW, Karaalp IS, Wani OR, Hameed A, Gviazda I, Shotan A.
Department of Medicine, University of Southern California School of Medicine, Los Angeles 90033, USA.
PMID: 11372007.
     Little is known about the outcomes of subsequent pregnancies in women who have had peripartum cardiomyopathy. Through a survey of members of the American College of Cardiology, we identified 44 women who had had peripartum cardiomyopathy and had a total of 60 subsequent pregnancies. We then reviewed their medical records and interviewed the women or their physicians.
     Among the first subsequent pregnancies in the 44 women, 28 occurred in women whose heart function had returned to normal (Group 1) and 16 pregnancies occurred in women still having reduced heart function (Group 2). Pregnancies caused a reduction in average EF in the women overall (from 49% to 42%), and also in each group separately (Group 1 from 56% to 49% and Group 2 from 36% to 32%). During these pregnancies, EF went down more than 20% in 21% of Group 1 women, and in 25% of Group 2 women.
     Heart failure symptoms occurred in 21% of Group 1 women, and in 44% of Group 2 women. The mortality rate was 0% in Group 1 and 19% in Group 2. The frequency of premature delivery was higher in Group 2 - 37% versus 11% for Group 1 women. "Necessary" abortions were also higher in Group 2 - 25% versus 4% in Group 1 women.
     Conclusions: Subsequent pregnancy in women with a history of PPCM is associated with a significant decrease in heart function and can result in clinical deterioration and even death.
 
Source: J Card Fail 2001 Mar;7(1):30-5
Comment in: J Card Fail. 2001 Mar;7(1):36-7
Title: Left ventricular function after a new pregnancy in patients with peripartum cardiomyopathy.
Authors: de Souza JL Jr, de Carvalho Frimm C, Nastari L, Mady C.
Heart Institute, University of Sao Paulo Medical School, Sao Paulo, Brazil.
PMID: 11264547.
     A new pregnancy is usually discouraged in patients with PPCM, particularly when there is still not fully restored heart function. This study was done to study heart function after a new pregnancy in PPCM patients. Nine of 44 patients with PPCM became pregnant and were selected for this study. We were unable to follow up on 2 patients. The remaining 7 women had regular exams until delivery, continued follow-up, and had echocardiograms 6 to 12 months thereafter.
     Pregnancy was relatively well tolerated in the patients, and they gave birth to 7 healthy newborns. After this latest pregnancy, 4 class 2 patients and 2 class 3 patients remained at that level of CHF. One class 3 patient improved to class 2. Heart size remained mostly unchanged.
     Conclusions: Although based on a small number of patients, our results suggest that heart function does not deteriorate during a new pregnancy in PPCM patients.

I had a third study - also Brasilian - but the numbers literally did not add up correctly so I did not think it should be trusted. Roughly speaking though, it fell almost dead center between the results of the 2 studies I posted above. Jon.


Joanne E, June 14, 2001 - Hey everybody, What does one do if there is no CHF specialist available less than 90 miles away? This has seriously concerned me, especially when Jon and so many others are so adamant about seeing this type of cardiologist. Any suggestions? Yes, I am seeing a cardiologist and I really believe he is the best we have to offer in Birmingham. I also have my diabetic doc and he stays in touch with the heart doc. Am I doing enough? Thanks, Joanne E. JavaJo90@aol.com


Jon's June 14 reply to Joanne E's June 14, 2001 - Hi Joanne, I would suggest that you read, read, read. Your best bet is to not just to look for new advances in therapy but to go over current therapy and and concepts of heart failure, really trying to understand the whys and wherefores so you can speak intelligently to your cardiologist about CHF. This is the best way I know to monitor and improve your own treatment. If you see studies you think he should read, have your local hospital print out a copy and have them mail it to your doctor. This is usually a free service from hospital medical libraries. Jon.


Bev T, June 14, 2001 - Hi All, I just got exciting news after all the apprehension with my SSD application, and all the questions I have asked all of you. I recieved approval in a record 33 days from the time I submitted the information! I sent them 91 pages of information along with the 9-page form. The SS counselor said she had never seen such complete records! If you want more info on what I did, just e-mail me. Prayers to all and hugs, Bev T. Mtnmama008@aol.com


Randy B, June 14, 2001 - Hi, I would just like to say that I have been receiving e-mail from many potential and post-transplant patients. Being a heart transplant recipient of nearly 12 years, many have written to me for advice about transplant and medication as well as depression and all the other things that come with transplantation.
     I would like to thank Jon for this wonderful and informational web site that helps eveyone with CHF or heart transplant get through tough times and answer all those questions that cannot be found elsewhere. I enjoy providing advice and support to people who have read my story in the Who's Who section of this site and feel comfortable enough to write a complete stranger for help. There are a lot of wonderful people out there who are in need of support for themselves or for their loved ones, and being able to help, no matter how insignificant, makes me feel wonderful. As always, I am willing to respond to any questions pertaining to transplant or the transplant process. I wish good health to you all, Randy B. BStriperslayer@aol.com


Joy R, June 14, 2001 - Hi, This is just an update. I am on my laptop while in the hospital. I ended up losing my IV access via Hickman catheter and they have beeen trying to give me my IVs peripherally but my veins are not cooperating very well. I can't get a new line in until Monday because a staph infection is what caused the problem with the old one and I have to get the IV antibiotics to try to wipe out the staph.
     I have a discharge planner on my case who wants me out of the hospital. I only need till Monday but she told me yesterday that if I didn't do what she said she would consider me against medical advice. I cried the rest of the afternoon. It's bad enough to be in the hsopital, worse to have cardiomoypathy, but to have all the stomach and IV probems - that's enough without her. My poor arms are all puffy and red and knotty from trying to get IVs but I either blow them or infiltrate. Any thoughts on how to treat a wicked discharge planner? I would wish my body on her. Joy. wapalaremi@home.com
 
Jon's note: Have your doctor call the hospital adminstrator/CEO. Then everyone else you can get to call. No kidding. It gets things done. Bad PR is death for a hospital and if you get some people to call the administrator, all of a sudden that discharge planner will be very scarce. I have some experience in this. Go straight to the top.


Jan's June 14 reply to Tracey C's June 13, 2001 - Hi Tracy, I wouldn't try to tell you what to do but I'll tell you what my story is regarding pregnancy. I had a lot of palpitations, which showed up as PVCs at the end of my first pregnancy. I was told it was just a pregnancy thing and would go away. After my beautiful daughter was born, I began having a lot of lightheaded spells and palpitations. Four months later I had a cath and was told that all my arteries were clear and that I was fine.
     Well, we got pregnant again when my first was 5 months old. I went to get a checkup at my cardiologist because of more dizziness and palpitations, and he was appalled that I was pregnant again. Of course there was a big to-do about the fact that he didn't tell me not to get pregnant again, blah, blah, blah. Anyway, the pregnancy was okay but I had to go on anti-arrhythmia drugs, which somewhat endangered the baby, and I had to endure a pregnancy filled with fear while raising my other little one.
     My son was born healthy but 3 weeks early. There were about 10 docs involved in the delivery and they had to use forceps because pushing was dangerous for me. I am very, very happy to have Mason. However, I would never have gotten pregnant again had I known. As you said, it isn't fair to all involved, plus your condition could worsen dramatically - then who will take care of that little one?
     My EF went from 55 to 35 over the course of things, I had to get an ICD implanted, and now I have CHF, which I didn't have before. Plus, although this is not of great importance, I had to endure the questioning disbelief of all the medical personnel who by looking at my chart knew I had previous heart trouble and that I got pregnant anyway. Although I always explained that I didn't know, I still got their disdain and felt I was unnecessarily wasting their time in their opinion. I felt stupid.
     Pregnancy is very hard on your heart. Some people get cardiomyopathy just from being pregnant, it's that hard. The amount of blood your heart has to pump nearly doubles. If your heart is having some trouble with just the normal amount, imagine doubling it. I hope my story in some way helps you in your decision. Good luck to you, whatever you decide, Jan. therowlands@att.net


Jan, June 14, 2001 - Hi, Having read all the CoQ10 stuff, I'm wondering what types of side effects, if any, have been experienced. All I could find was stomach and digestive problems. I recently changed from Altace to monopril, and at the same time began taking CoQ10. Two days later I am experiencing lots of old and new symptoms. Arrhythmias including ectopy and short runs are old news to me but have been controlled by my ICD and are now back. The new thing is a sort of breathing problem in which I feel the need to take a deep breath, a welling emptiness in my upper chest and throat. It feels like when you hold your breath a long time and have to let it out and breath again. Also, lightheadedness on standing and fatigue (my first since being diagnosed). Do any of these sound familiar for anyone taking either of these drugs/supplements or is this a CHF episode rearing its ugly head? If anybody can enlighten me, please do! Thank you, my friends, Jan. therowlands@att.net
 
Jon's note: Stop the CoQ10 immediately and see what happens (changes should always be made one at a time). If you get better after stopping it, wait 30 days so you get accustomed to the monopril and then reintroduce the CoQ10 at 30mg once a day and see what happens. I'm guessing it's the Rx drug switch hammering you.


Joe S, June 14, 2001 - Hi, This double whammy with now having diabetes along with a fouled up heart is becoming a wee bit difficult. I have a few questions for those in the same boat, since this is so new to me.
     The doctors never told me how much sugar I could have, what to eat, and what not to eat. For example, a friend told me to avoid all bleached white flour and other white things. Are there other types of flour to avoid and what about eating fresh fruit? My 2 cherry trees are bursting with thousands of fruit! Any advice on anything will be greatly appreciated, Joe S.
     PS. I am not on insulin yet, praise the Lord. jes@gbis.com


Sammy L's June 14 reply to Robin L's June 13, 2001 - Hi Robin, I found your experience with the "gun shot" headache interesting. Shortly after my seventh angioplasty I experienced migraines the same way. I thought I had been hit in the temple with a sledgehammer. The gun shot description fits better. I never related this to the Plavix and none of the gazillion docs who saw me did either. I think that is a new question for me to ask.
     We did find out that several nerves were damaged in my back from being on the table so long for the angioplasty, during which 5 stents were placed. I had my iliacs done (4 stents) and the large artery in my left arm under the clavical. After several weeks of muscle relaxers, anti-inflammatories, and physical therapy, the migraines have not returned.
     This last go round with Plavix, I haven't had any headaches. I am so sorry to hear about yours. I know how miserable they are. I think that was the only time I begged the doc to kill me. The discoloration in your legs must be scary. Keep us posted please, as to what the doc says.
     To Tracey C, I only wanted to say I am an adult adoptee, having been adopted at about age 10. I can tell you that while it was a bit rough being that old to be adopted, I still think my adopted mom) is the absolute Queen! God blessed me by giving me people in my life who loved me enough to overlook my faults. Besides, I look just like my mom, no kidding! ;-) Peace be with you whatever your choice.
     A little biased statement here. Although I do have 2 daughters myself, I have wondered if I did them a disservice gifting them with these lovely genes. I resolved that by understanding that only God could have decided I was worthy enough to be blessed to share them with Him. Good luck to you and I will keep you in my prayers. My daughters have been the reason I have enjoyed this life so very much, and they have also been the reason I have stayed alive on many occassions. Peace and sleep well, Sammy. SammyL@home.com


Brandy, June 15, 2001 - Hi, Well, over the last few days, every time I stand up my BP goes to roughly 68/41 (determined by pressure readings, this is the number that appears the most) and my pulse soars to 100 and higher. When at rest, my blood pressure is 95/61 with a pulse of 57 to 66, just depending. I called my doctor, who said to cut my zestril in half to 5mg twice daily. I have been on Zestril over a year. Why would it just now be lowering my pressures too much? Could it be something else that the doctors are missing? My EF is 50% right now, as of the last test in mid-April. Does it matter? Brandylee1114@aol.com


Jon's June 15 reply to Brandy's June 15, 2001 - Hi Brandy, I can't tell you if he's right or not but this is a classical sign of postural hypotension. That is a quick drop in BP immediately after standing. It happens when the heart can't react to the need for more blood fast enough - due to the heart's controlling neurohormones being too slow to handle a quick change. Standing requires a surge in blood flow, which your slowed-down heart can't cope with. Since ACE inhibitors are designed to slow down such heart-controlling neurohormones, they are always a likely culprit.
     About being on meds a long time before suffering a side effect, see my June 4, 2001 post to Ginger. Jon.


Jack D's June 15 reply to Jan's June 14, 2001 - Hello Jan, The reason people get the idea that CoQ10 can have side-effects is they think it is a drug. It is not. It is something that the human body produces. You could think of CoQ10 and hemoglobin as being related. Your body produces each of them so there can be no side-effects from having them in your body. You can only have problems when they start being diminished in your body. As you grow older and for many other reasons, your body slows the production and that causes you problems because CoQ10 is one of the key ingredients that power the mechanism that releases energy into the mitochondria. Without it your muscles don't work properly. Jack. maddjak@hotmail.com


Jon's June 15 reply to Jack D's June 15, 2001 - Hiya Jack, I have some comments on that. <g> First, I haven't dug into CoQ10 for a long time because I haven't seen any major trials revealing anything new about it relating to heart failure, so I'm rusty on the topic. However, I seem to recall that CoQ10 is ingested in a normal diet as well as being produced in the body, so getting too much does seem possible.
     Also, norepinephrine is manufactured by the body and is 100% natural, but too much of that is what kills us in heart failure; Beta-blockers are designed specifically to block its action. So it would seem that bodily-produced natural substances can indeed cause ill effects. Just a general point but I think we need to be wary of assuming that bodily-produced substances are inherently safe, regardless of amount present.
     With that said, I have only heard one person in over 5 years of studying heart failure therapies say CoQ10 affected them badly, so I'm guessing side effects are very rare, if they do exist. I always suggest that a person start at no more than 30mg once daily, taken with food. The first time I stated CoQ10 I think I was highly deficient because it hit me like speed for about 20 hours, although after that first small dose, the effect never recurred. I think I needed it and that's why it gave me the rush the first time. I also believe it helped my CHF. Your call. ;-) Jon.


Amelia, June 15, 2001 - Hi everyone, I've been reading most of the posts and having a hard time remembering what meds are taken together. I am in heart failure. My concern is that my doctor will be adding more meds. I have a-fib, SVT, and have had TIAs. This is just a touch of the problem the doctor is trying to control. I am now on 5mg Vasotec, Coumadin, 400mg amiodarone (Cordarone)amiodarone and Lasix. He wants to add Coreg, which I understand a lot of you are on, and another beta-blocker that I can't remember and another ACE inhibitor.
     I understand that amiodarone is one of the most powerful anti-arrhythmia meds so why add another? From what I have been reading, Coreg does the same thing, so why would I be on 2 beta-blockers and 2 ACE inhibitors? The whole team of doctors want me to have the EPS so I can eliminate some of the drugs and they can get a better overall picture, but I am not ready to deal with that now. My doctors answer was "these are medications for heart failure and we want you to live a long life with as much normal life as possible."
     Any information is greatly appreciated. Have driving privilages been taken away from anyone? After 2 months I can get my feet wet but with some one driving with me. Wishing all the very best. amelias@erols.com


Jon's June 15 reply to Amelia's June 15, 2001 - Hi Amelia, Perhaps the two ACE inhibitors are actually an ACE inhibitor and an ARB (ACE Receptor Blocker) - sometimes called an ACE 2 inhibitor. This is a fairly new idea but very acceptable, since the two drug classes block angiotensin II in different ways.
     I doubt that any doctor would put a patient on two beta-blockers, so I would suggest that you have a face to face talk with your doctor - take notes - and make sure you are understanding what he wants to try. Adding Coreg might also help your arrhythmia even though you are already taking amiodarone. I would suggest that you try and get your doc to add meds one at a time with 30 to 60 days between each addition, so you are sure of what is causing side effects if side effects occur. Jon.


Roz W's June 15 reply to Joy R's June 14, 2001 - My dear Joy, I am indescribably angry after reading your post about your treatment at the hands of that "planner" bean-counter person. Jon's advice, as always, is right on. I was always one of those quiet, "good" patients but have been empowered by several nightmarish hospital events to be loudly aggressive when necessary.
     See if there is someone called a hospital ombudsman, or patient representative, as well as the chief hospital administrator, and insist on seeing them personally. Threaten them with lawyers, newspapers, etc,... This situation is intolerable and to have it happen to you Joy, after all that you have endured so bravely for so long, is criminal. I am terribly sorry and terribly angry. If sending love helps in any way I send you all the love the world will hold. Please, feel better soon, Roz. RWarriston@AOL.com
 
Jon's note: You might want to wait to make "threats" until they are truly needed. Complaints to the higher-ups may get it done without such "threats," which spoken too early may just get their backs up. Having your doctor do your complaining is enormously effective with hospital adminstrators.


Ben B, June 15, 2001 - Hi, Does anybody know if there is such a thing as generic Zestril (lisinopril)? I am in a health plan that will pay full price for generics but caps non-generics. Of course I'm going to ask my doctor but this is usually faster on questions like this.
     On an unrelated note, I'm going to have an echo. It is my first in 2 years and basically the first echo since I started taking Coreg so I'm hoping for some improvement, although I sort of doubt it. I guess it is better to feel pretty good with an EF of 25% than to feel terrible with an EF of 45% like so many other people seem to. Still, it would be nice to get some good news for once.
     My cardiologist has turned out to be pretty good, especially since I found out he hasn't reallly been paid for a year owing to the bankruptcy of my Physician's Group. This is a wonderful little problem we have here in California. The HMOs pay Physicians' Groups, and then the Groups screw everything up. I'm in a good one now. Still, my doctor told me not to sweat the payments; that it's not my problem. He also nags me about losing weight, which I like. It seems so many doctors are afraid to bug their patients and tell them it doesn't matter, which I know is nonsense. However, a lot of doctors just consider it a lost cause and give up. Mine is persistent since I tend to lose it ever so slowly but steadily. Anyway, after all that rambling I hope somebody knows the answer to the question I originally asked. bdbrinkman@juno.com


Jon's June 15 reply to Ben B's June 15, 2001 - Hi Ben, Yes, there are generic equivalents to Lisinopril. See the FDA's drug approval list at www.fda.gov/cder/approval/index.htm and look under L, then Lisinopril. I see 2 entries, tentatively approved, one for Eon Labs Manufacturing and one for TEVA Pharmaceuticals. Whether either is available yet, I did not check. The web sites should say. Jon.


Sandra, June 15, 2001 - Hi everyone, This is new to me. I'm having a hard time knowing what I can do and what I can't. I was in the Houston flood and tried to push my car out of the water, and ended up in the ER. I'm also having a hard time talking to my kids. I don't want to worry them. I really don't know what to do. sjshaas@email.msn.com


William B, June 15, 2001 - Hi, I was looking at this site and the questions asked here. What would you guys say is the most important question ever asked? Will I live? How long? Will you marry me? Do you love me? Etc,... My candidate for the most important question ever asked is Mark 8:29 - "But whom say ye that I am?" Probably more important is our answer! You guys have a good heart week. willdet@juno.com


Jon's June 15 reply to William B's June 15, 2001 - Hi William, Well, you mixed up which question is most important asked here versus which question is most important ever, so I'll answer both from my own perspective. I think the most important question asked here is - although rarely started in these exact words - "Am I alone?" Learning that thousands of people have the same problems and are coping with them is a tremendous relief to everyone, I think, including me.
     As to the most important question ever, I would say it is one word, "Why?" Keep asking that one honestly long enough and you'll become wise and a disciple of Jesus to boot. ;-) Jon.


Maura, June 15, 2001 - Hi, I hope someone can help. I have DCM and CHF, and I just found out I am pregnant. I stopped taking the meds even though it's too late probably to avoid damage. I have a call in to the doctor. Has anyone heard of this situation? What happens? I shouldn't have been able to get pregnant (they said I couldn't) but here I am, Maura. garyfarrall@aol.com


Mary Lou L, June 15, 2001 - Hi all, Click here for information about a new experimental treatment for atrial fibrillation using microwaves. www.intelihealth.com/IH/ihtIH/EMIHC000/333/8011/324099.html. Mary Lou L. MLBinks@aol.com


Nancy's June 15 reply to Dorothy's June 11, 2001 - Hello Dorothy, This is my first time at this site reading posts and I had to reply to yours. I was diagnosed with GERD 10 years ago, a few years later CHF, then I was told no CHF, then told I had asthma when I was coughing and wheezing about 4 years ago. Now I have the CHF diagnosis again with cardiomyopathy and a leaky mitral valve. Do our docs really know what they are doing? I know I have GERD for sure and Prilosec keeps it in check but I still need Tums from time to time. This swelling and shortness of breath is a sure sign that they finally diagnosed the CHF correctly. I hope you are doing better, Nancy. fifi@sybercom.net


Sammy L, June 15, 2001 - Hi, These early mornings can eat my soul sometimes. I tried to re-establish a relationship with myself, to find and accept my limitations. Payment for services rendered small, a drop in the bucket compared to the money I used to earn. I try not to value myself according to the amount of paycheck I used to earn. Now I sneak to have some cash, cash that feels dirty and brings an emotional tax that has spun me into a sadness I thought I had left behind.
     I pay the price physically with cataplexy attacks, shortness of breath, and exhaustion. I pay the price emotionally with fear of being caught doing what every red blooded American was raised to do, work and pay taxes. I was living my life one day, working answering phones, smiling, making others feel comfortable when a grinch stole my vision. Unable to see to protect myself, demons crept into my soft heart. At first the demons had me. I worked to surround myself with the protective power of love and support. I prayed. I sought God again. I stepped up to the plate to take a swing back. I became proactive to resolve the spinning toilet my life was fast becoming.
     For such a long comforting time I praised God for restoring my senses. I found tools to bolster my sagging main beam. I regained confidence through trial and error, each event a valued powerful learning lesson, from physical abilities to emotional abilities. Yesterday my world as I had come to know it was infiltrated by that grinch again. This time it wasn't my vision he blurred, it was my self esteem. That little tiny paycheck I had earned came smeared, torn and with sharp edges. I broke.
     I cried. I cried for what I once was. I once was oblivious to life changing pain. I once was a working mom and wife active in community issues. Now I lay broken at the bottom of a bloody battle site wishing I could be restored to just a reasonable facsimile of an oblivious soul. I wish not to feel Job's pain! All of this simply because I did a little child care for about $30. I really thought I had gotten to some acceptance that my life just is but although I try not to, sometimes the old life comes back to haunt me.
     I am sure others struggle emotionally to stay on the sunny side of the street. Me, I know if I was any better I'd be twins. You know though, when you have like 20 bucks in the bank and are 80,000 in debt and you need gas in the car and you have to have that stupid echo test today, and you know you have to go see the staff that just doesn't quite get it - it can blow you up.
     Tommorrow will be a better day. Peace and sleep well, Sammy. SammyL@home.com


Jon, June 15, 2001 - Hi everyone, The following pages on my site have been added or updated:

  1. ICDs & More
  2. Medspeak
  3. New CHF Meds
  4. New CHF Meds 2
  5. New Low-sodium recipe
  6. Heart Info Text Files

Jon.


Rob C, June 15, 2001 - Hi there, I'm 36 and was recently diagnosed with cardiomyopathy and CHF. I take 12.5mg Coreg, along with potassium, Lasix, digoxin (Lanoxin) and a couple other meds daily, which are working well. However, I have a couple of symptoms which I thought someone might be able to provide some thoughts on.
     First is a sometimes sharp but mostly just annoying pain in the side of my back, which seems like it could be in my kidney area. Second is the tendency for my entire right side to "fall asleep," particularly when lying on my back. I suspect meds or now lower blood pressure is the cause. Any ideas on either of the above? Thanks. robert30@home.com


Jack D's June 15 reply to Jon's June 15, 2001 - Yo Jon, Yep, CoQ10 is ingested in a normal diet in verrrry small amounts. It's mostly found in the dietary source that people on this forum have decided to avoid - red meat! From what I understand, getting too much of it just goes through your system. As for the side effects part, it is a necessary part of your bodily functions. maddjak@hotmail.com


Jon's June 15 reply to Jack D's June 15, 2001 - Hey Jack, You and Billdog are the two people I really enjoy arguing with! <g> It could be that CoQ10 is like magnesium, which can at the worst give you diarrhea no matter how much you take in, I dunno. Me, I covet red meat! My daughter took me out to eat recently. She asked me where I wanted to eat and I just told her, "Anywhere they serve red meat and a good salad." Oh yeah, that tee-bone was outstanding! Jon.


Jim L, June 15, 2001 - Hi, This is just a reminder to those who are taking expensive prescriptions. Many of those - including Coreg and Zocor - are priced the same regardless of the strength in mg (milligrams). Therefore, if you are taking 40mg of a drug, have your doc give you a script for 80mg and use a pill splitter to cut the pills in half. I've found that the prescription costs can be cut in half using this procedure. Good luck! clocker131@home.com


Joy R, June 15, 2001 - Hi, I am still in the hospital but am having no more trouble with the discharge planner. First I complained to the patient resource person and then called my doctor at home. The doctor was furious and the planner also had to deal with the complaint I made to her superiors. It turns out that I got an apology and she brought me a plant for my room as a peace offering. She told me she didn't review my chart completely and just thought I was waiting for surgery. Duh! I am waiting for surgery but I can't have it till the staph infection is gone. It would be kind of hard to do IV antibiotics every 8 hours as an outpatient, much less the dobutamine and the hyperalimentation. I just wanted to let you know it turned out alright and I even forgave her. Joy. wapalaremi@home.com


Pat Y, June 15, 2001 - Hi, I seldom read posts daily. In September I applied for Social Security Disability. My doctor had suggested no work from a disability standpoint 2 years earlier. I am age 58 with DCM and CHF. Like almost everyone else, I was turned down, so I hired a lawyer.
     After a deposition between my lawyer and doctor, and being sent to a psychologist, I found a lot of extra money in my checking account a few days ago. Questioning the bank revealed that Social Security had made a deposit. It is several days later and I have yet to get the official word that I qualified for Social Security Disability at the appeal level. Getting a lawyer early in the game was really worthwhile. Earlier my lawyer said that when a person my age walks in with a work history like mine and a doctor who fully supports disability it is enough to make a lawyer's hair turn brown. I pray that all of the rest of you who need disability to survive will be approved soon.
     By the way, I stopped by my church the day I found the money and gave 10% to a needy program. I did not anticipate the good feeling I would have being able to give more than planned. PTYoumans@aol.com


Sherrell G, June 15, 2001 - Hi, This is to ask for prayers for Mike Joye's family. Mike lost his battle with DCM yesterday at age 53. sherrellgay@juno.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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