The paperwork never ends The Archives
June 1-15, 2004 Archive Index CHFpatients.com

Jon 6-1     quote for the day
 
Alexandra's 6-1 reply to James' 5-27     half empty or half full
 
Alexandra's 6-1 reply to Sandy's 5-31     seek info on Florida CHF docs
 
Elka's 6-1 reply to Carolyn Knight's 5-31     post heart transplant experience
 
Linda B 6-1     SSD approval, stomach distress question
 
Renee C 6-1     seek info on disability and bankruptcy
 
Sandy's 6-1 reply to Roberta's 5-31     thanks for sleep study info
 
Sandy's 6-1 reply to Alexandra's 6-1     Florida doctors
 
Sandy 6-1     is it okay to take ginseng?
 
Jon's 6-1 reply to Sandy's 6-1     potential ginseng problems
 
Tom S' 6-1 reply to Renee C's 6-1     bankruptcy experience
 
Pat 6-1     what do you tell your kids? & more
 
Vicki J 6-1     ICDs and mammograms - concerns
 
Vicki J's 6-1 reply to Linda B's 6-1     Disability, ICDs & mammograms
 
Jon 6-2     download this & more
 
James 6-2     what about MSG?
 
James' 6-2 reply to Pat's 6-1     what to tell kids & more
 
Jon's 6-2 reply to Pat's 6-1     what to tell kids
 
Roger's 6-2 reply to Roberta's 5-31     sleep study experiences
 
Blanche's 6-2 reply to Vicki J's 6-1     mammogram with pacemaker
 
Sandy's 6-2 reply to Jon's 6-1     what about hawthorne?
 
Jon's 6-2 reply to Sandy's 6-2     I don't know much
 
Lori K 6-2     seek advice on meds timing
 
Jon 6-3     quote for the day
 
Scott Brown's 6-3 reply to Lori K's 6-2     Altace, Coreg, side effects
 
Renee 6-3     seek advice on paying for ICD implant
 
Jon 6-5     quote for the day
 
Alexandra's 6-5 reply to Sandy's 6-1     moving in autumn
 
James' 6-5 reply to Renee's 6-3     our ICD isurance experience
 
Greta's 6-5 reply to Jon's 3-18     aches, pains and insomnia
 
Jon's 6-5 reply to Greta's 6-5     aches, pains and insomnia
 
James' 6-5 reply to Sandy's 6-2     hawthorn experience
 
Lydia Moore 6-5     does anyone get droopy eyelids? & more
 
Alexandra's 6-5 reply to Renee's 6-3     ICD insurance experience
 
Mike 6-5     nothing to look forward to now
 
Roberta 6-5     sleep study, part 2 & some questions
 
Heidi 6-5     what will Aldactone do for me?
 
Renee 6-5     thanks for the replies
 
Sandy T's 6-5 reply to Mike's 6-5     thanks for the replies
 
Sharon's 6-7 reply to Heidi's 6-5     Aldactone and sleep studies
 
Lori K's 6-7 reply to Scott Brown's 6-3     thanks, Altace dosing, Coreg
 
Lori K's 6-7 reply to Mike's 6-5     compassionate drug use possibility
 
Marty's 6-7 reply to Mike's 6-5     I can relate, hang in there
 
Norma 6-7     hawthorne experience
 
Roger's 6-7 reply to Roberta's 6-5     CPAP experience
 
James' 6-7 reply to Roberta's 6-5     CPAP experience
 
Jon 6-7     quote for the day
 
Donna H 6-8     has anyone else had these symptoms?
 
Neil A 6-8     some suggestions
 
Gene's 6-8 reply to Roger's 6-7     CPAP masks
 
Dorothy's 6-8 reply to Lydia Moore's 6-5     eye problems and solutions
 
Dorothy's 6-8 reply to Pam V's 5-18     some tips for nutrition
 
Theresa 6-8     seek CHF doc in Rhode Island
 
Jon 6-10     posts, rewrites, quote
 
Doris 6-10     seek moisturizing cream ideas
 
Sandy 6-10     update - good news
 
Chelle 6-10     really need financial & planning advice
 
Sandy's 6-10 reply to Stephanie's 5-21     my experience
 
Pat H's 6-10 reply to Neil A's 6-8     eye drops helped me
 
Vicki J's 6-10 reply to Donna H's 6-8     nausea relief with compazine
 
Larry O'Connor 6-10     questions - vitamin C, taking meds
 
Jon's 6-10 reply to Vicki J's 6-10     familial cardiomyopathy
 
Jon's 6-10 reply to Larry O'Connor's 6-10     vitamin C, taking meds
 
Richard 6-11     watermelon and edema
 
Lori K 6-11     have the shakes starting Coreg!
 
Jon's 6-11 reply to Lori K's 6-11     one possibility & the quote
 
Rosamond Sanderson's 6-11 reply to Chelle's 6-10     coping with the load
 
Bill Ryan 6-11     how will I do without surgery?
 
Donna H's 6-11 reply to Vicki J's 6-10     & update on my husband
 
Greta's 6-11 reply to Doris' 6-10     moisturizers
 
Greta's 6-11 reply to Chelle's 6-10     some suggestions
 
Jon 6-12     quote for the day
 
Valerie R's 6-12 reply to Richard's 6-11     watermelon & tea, diuretic effects
 
Susan B's 6-12 reply to Doris' 6-10     paraffin wax for dry hands
 
Art 6-12     seek BiV pacer experiences
 
Kerry 6-12     online discount pharmacy
 
Susan B's 6-14 reply to Jon's 6-12     waxing your hands
 
Jim 6-14     does anyone get this side effect from meds?
 
Roberta's 6-14 reply to James' 6-7     sleep studies & more
 
Tony 6-14     BP, allergens, and more
 
Vicki J's 6-14 reply to Lori K's 6-11     beta-blockers and the shakes
 
Blanche's 6-14 reply to Art's 6-12     BiV pacemaker experience
 
Vicki J's 6-14 reply to Donna H's 6-11     nausea and meds
 
Gene 6-14     soft drinks & shortness of breath
 
Marly's 6-14 reply to Art's 6-12     BiV pacemaker experience
 
Bill 6-14     seek advice on depression
 
Lori K's 6-14 reply to Jon's 6-12     beta-blockers & more
 
Katherine H's 6-14 reply to Art's 6-12     BiV pacemaker experience
 
Tony's 6-15 reply to Gene's 6-14     carbohydrates and symptoms
 
Jon 6-15     quote for the day
 
Sandy H 6-15     seek comments on meds changes
 
Ruthie A 6-15     does anyone take niacin?
 
Roz' 6-15 reply to Jon's 6-14     hand moisturizing
 
Donna H 6-15     QRS interval & doctor access
 
Jon's 6-15 reply to Donna H's 6-15     QRS interval & doctor access
 
Suzy C 6-15     update on my husband Dick
 
Greta's 6-15 reply to Bill's 6-14     dealing with depression
 
James 6-15     does anyone get insomnia?
 
Ron 6-15     will I get better?
 
Theresa 6-15     pins & needles, foot & leg pain?
 


Jon, June 1, 2004 - Howdy-doo everybody, Here's that old quote: "In Israel, in order to be a realist you must believe in miracles." David Ben-Gurion. Jon.


Alexandra's June 1 reply to James' May 27, 2004 - Hi, I really like your glass theory. I was always a half empty person, until the last few years. jakethesnake56@aol.com


Alexandra's June 1 reply to Sandy's May 31, 2004 - Hi, My family and I are moving back to Florida in the next year or so and we will be living in St. Pete Beach. Is your doc a CHF specialist? If not, what are some good hospitals in the area? I would really appreciate any info. I have been to Shands in Gainesville and they have great specialists there, but it is a bit far from where we are going to live. Thanks for any info. Have a great day! jakethesnake56@aol.com


Elka's June 1 reply to Carolyn Knight's May 31, 2004 - Hi Carolyn, I'm a post-heart transplant recipient and also a live heart tissue donor. I am 18 years old and had my transplant 9 months ago. I was on the list just under 6 weeks. I know you said you are wishing to speak to others waiting for a transplant, but I thought I'd let you know who I am if you have any questions about post heart transplantation. Elka. peel416@mail.bigpond.com.au


Linda B, June 1, 2004 - Hi, I have a question. I just received my approval from SSA. How long does it take for them to actually start sending the money? I did receive the approval without hiring a representative, although it took me almost a full year. For those of you still in the hearing process, I would say to keep in touch with the hearing office and if you are in a critical financial situation, make sure they know this.
     I have non-ischemic DCM and LBBB. My last echo shows that my heart has returned to normal size, which I attribute to the miracle meds, but my EF has dropped from 30% to 25% and I am increasingly fatigued and weak. I am also sick to my stomach a good part of the time. One thing I would really like is to enjoy eating again. Has anyone dealt successfully with this? The doctors don't associate stomach distress with CHF, but I think they're wrong.
     I wish everyone the best of luck, especially you young people. lmbanicki@yahoo.com
 
Jon's note: Consider www.chfpatients.com/ace.htm#visceral_angiodema


Renee C, June 1, 2004 - Hello all, I've read this board for a year, but this is my first post. I was diagnosed in May, 2003 with class 3C dilated cardiomyopathy with CHF. My EF at the time was about 23%, but is now up to 28%. My cardiologists have told me that I absolutely cannot work, and I've applied for disability and have been turned down twice. Now I have an attorney and am awaiting my hearing date.
     On top of that, my husband and I have just filed bankruptcy. When I filed, I had to list my disability claim as "pending litigation." My bankruptcy attorney (different from my disability attorney) told me that in Chapter 13, the trustee could possibly want to count my disability payments (if I get approved, which my disability attorney is very optimistic that I will be this time) as income and take them to pay off our debt. He said that he had never seen it happen, but just wanted me to know that the possibility existed.
     When he saw how this upset me, he told me that we might be able to file Chapter 7 (we have a little too much equity in our home to quality for Chapter 7 but he said it might work) in which disability payments are labeled as "income," which he didn't think they could take. I was just wondering if anyone else had experienced this?
     With just my husband's income and 3 little boys to raise, along with my medical expenses, even after filing the bankruptcy we will still have trouble just making our monthly living expenses, so we are really counting on those payments. Does anyone have any insight for me? I live in Tennessee if that has any bearing on anything. Thanks very much! Renee C. 4ukcats@bellsouth.net


Sandy's June 1 reply to Roberta's May 31, 2004 - Hi, Thank you for telling us about your sleep study. I'm going in for mine on the 3rd of June. It sounds like I'd better not take my Lasix. <lol> I will be back with my results. Take care. Sandy. bleuskiiisgrl@yahoo.com


Sandy's June 1 reply to Alexandra's June 1, 2004 - Hi, It's nice to hear you're coming back to the area. It's very hot this weekend, you might want to wait till September or so. This heat is making me tired and I found I can't be outside for more than a half hour. My doctor is with The Heart & Vascular Institute of Florida, and there are many doctors working in the Institute. I sent you an e-mail with his name and phone number. Good luck to you! blueskiiies@yahoo.com


Sandy, June 1, 2004 - Hi, I've had what you all call "fatigue hangover" for the past 3 days. I need some energy and today bought CoQ10 (that stuff was expensive) with the hopes it will help me. Is Ginseng okay for me to take with heart failure? Thanks. bleuskiiisgrl@yahoo.com


Jon's June 1 reply to Sandy's June 1, 2004 - Hi Sandy, I am sure it depends on who you ask <g> but please be aware that ginseng can - but doesn't always - cause fluid retention. Another rare side effect is tachycardia. If you do take it and are going to have any kind of surgery, tell your anesthesiologist you are taking it! Jon.


Tom S' June 1 reply to Renee C's June 1, 2004 - Hi, From the Bellsouth.net e-mail addy I would guess you are in the south somewhere. I am in North Carolina and back in October completed Chapter 7 Bankruptcy proceedings, mostly for medical bills and taxes. I also lumped in my credit card debts and a very old bank debt that I had totally forgotten about. I am on disability and my wife works. Together we earn over $50,000, disability included.
     Not once in any discussion with the attorney was my income or her income ever mentioned, nor did they ever say anything about us having to pay out anything with Chapter 7. We also are buying a home that we have lived in for almost 9 years, and again, nothing was said about that. The only thing the trustee seemed interested in was that if we had addtional homes, or property, they would have to be liquidated. We do not have any other homes. The cars we went ahead and did a waiver for, so that we could keep them and keep on making payments on them. Otherwise, every other debt - except some North Carolina taxes - were discharged.
     We are now filing Chapter 13 to get the state of North Carolina in line and they will end up accepting a whole lot less than what they say we owe in taxes. I found Chapter 7 to be relatively painless and actually discovered that even with over $50,000 in income we were still well below their official poverty level. We do have 4 minor children living at home and one in the Army.
     I hope this information helps. By the way, the total cost of my chapter 7 was $1400 and I discharged nearly half a million in debt, mostly medical and taxes. Chapter 13 will cost me about $494 and should reduce my past tax burden from about $30,000 down to about $5,000. I have tried everything else I can think of with the state and this is more or less the last resort. I just don't have their blood money, but that's another story. Bigheart@muchomail.com


Pat, June 1, 2004 - Hi, My 50 year old husband had a heart attack last summer seemingly out of the blue. He is Type 2 Diabetic but was managing it well with medication and a jogging regime. He started cardiac rehab but continued to feel lousy. A cardiac cath in late fall revealed that he had CHF.
     He is on all the appropriate meds (I think) and has ups and downs. He wrestled with depression but is emotionally much calmer and optimistic after 6 months of Lexapro. We are lucky enough to have great health benefits, but we have been through the ringer with investing time and energy into which doctor to place primary care. He now sees 2 cardiologists and they (somewhat) communicate with each other. I am not sure if this is wise. Both doctors want him to choose one to stick with, yet they offer somewhat conflicting opinions. I'm not sure if all is being done for him.
     We have 2 young kids, ages 8 and 11 years. I am worried about our future as a family. Our kids don't really understand the stress and concern we've been under. I think my husband is in denial about the gravity of his condition. I try not to dwell on life expectancy; how much longer he'll be able to work; whether we should commit to long-term projects like remodeling, planning vacations; whether to continue living in a 2 story home.
     I am not really asking any questions, except how are other families with young kids coping? Does anyone have any suggestions, words of wisdom? Thank you! patmargib@comcast.net


Vicki J, June 1, 2004 - Hi, I would like to have any information on mammography and ICDs. I had my ICD implanted in January and am still a little tender. I've had a reduction to a D cup, but they always pull you up against the machine to take the x-ray. I measured the bottom of my ICD to the nipple area and it's only 2 inches. From past experience, the x-ray includes this area.
     I don't mind the pain but I'm worried about damaging the implanted device. I called the ICD nurse and she suggested calling Medtronic, which I did. I got a male tech. He transferred me to a woman and neither could really give me a definite answer, just that they didn't think it would harm the unit. I'm not much for guessing, especially from the manufacturer.
     Has anyone had a mammograph with an ICD, or do they possibly have a different way to x-ray? Any suggestions? Thanks for your help. Vicki J. vj6464@aol.com


Vicki J's June 1 reply to Linda B's June 1, 2004 - Hi Linda, I was approved the first time also. They make you wait 6 months for your first check after the date they call you disabled. After 2 years you qualify for Medicare.
     Have you have a mammography since your implant? Mine is implanted low, close to the breast on the left side and I am worried about the pressing damaging the ICD. Any suggestions? Thanks, Vicki. vj6464@aol.com


Jon, June 2, 2004 - Hello all, Please take time to download the urls available at www.chfpatients.com/urls.htm. These have been updated. This is a selection of over 500 links that I personally use for health information on everything from government services to drug financial assistance programs to heart transplant to the latest medical journal articles. Just unzip them into your "Favorites" folder and they will show up in a folder called "Health" nicely categorized into different folders for easy use. You can also download them as an executable (EXE) that will unzip them for you to the right place in C:\Windows\Favorites.
     Today's quote: "If I were two-faced, would I be wearing this one?" Abraham Lincoln. Jon.


James, June 2, 2004 - Hi, I'm hearing an MSG instead of table salt argument. Of course, MSG contains sodium but it has far less in it than table salt. Some argue that the fermentation process used to produce the glutamic acid component leaves the end product laden with contaminants and is not as healthy as naturally occuring versions of the same. Aside from the sodium component, what are the issues for CHF patients, regarding MSG as a flavor enhancer? jnj@spamcop.net


James' June 2 reply to Pat's June 1, 2004 - Hi Pat, I'm 35 years old and have a 2-1/2 year old as well as a 9 month old. As a result of my CHF, I am unable to work. I'm getting ready to try for disability, but expect it to be quite an uphill battle since I recently had a BiV pacer installed and my condition improved, although my doc agrees a regular job is not viable for me.
     I certainly realize the gravity of my condition but I fully intend to live another 30 to 50 years. My kids of course do not know what all is going on (they're too young) and I see no reason to burden them with such matters at so young an age. I do not intend to broach this with them until they are far more mature and capable of handling it. An 8 and 11 year old still lack the necessary coping skills to adequately handle something such as the potential early death of a parent. If it is going to happen, then hey, it's going to happen, so why make the kids stress over it? Simply set reasonable limitations and live your life accordingly.
     We currently live in a 2-story home. I've no issues getting up and down the stairs. There's like 15 or 20 stairs, I think. In fact, we'll be moving our bedrooms upstairs soon, in an effort to accomodate our new arrival's needs. ;-) We'll still be planning family vacations. We've been remodeling our house for several years and I have plans to remodel the kitchen, laundry room, and of course the second floor. Some of these projects are rather major as well, including framing, drywall, electrical, plumbing, and cabinets.
     What I'm getting at here is that you and your husband need to evaluate his condition and set reasonable boundaries for your life style. If he is unable to climb stairs then by all means look to moving to a single story home. If minor exertion greatly weakens him, hire someone else to do the physical portions of the remodeling. If extreme heat bothers him, then go somewhere other than Phoenix for summer vacation.
     With proper treatment, CHF can often be brought under control and be managed. There's no reason to stop living your life, just accomodate the new circumstances and go on living. This is important for all of you. For you, it means a full, rich life; for your husband it not only means that but it also helps him to cope with the weight of this gravity; for the kids, it means many fond memories of growing up and loving their father while he was here rather than dreading the day he would not be here.
     Remember that eventually we all must pass on. This is inevitable and as much a part of life as peanut butter and jelly sandwiches. Don't focus on the end of your story, thereby missing it altogether. Instead, focus on the making of the story and let someone else tell it many years later. jnj@spamcop.net


Jon's June 2 reply to Pat's June 1, 2004 - Hi Pat, Just addressing whether or not to tell your kids, why not ask them how much they want to know? When I got CHF at age 36, my daughter was 12 years old. At first, we didn't tell her much. Soon, we told her that I was very sick, and we asked her how much detail she wanted about my health situation and probable future. She said she wanted it all and she was very glad we asked her.
     From that point, we kept her fully informed. She appreciated it and handled it well - good news and bad news alike. Kids are people and people are all different, so don't make too many assumptions about what they want. Consider asking them. Jon.


Roger's June 2 reply to Roberta's May 31, 2004 - Hi, Aren't those sleep studies fun though?! The first one I had, I really wondered what was happening and then they hook all those wires to you and say, "Now you can go to sleep." Those machines really work though, if you need it. About 4 years ago I stopped breathing an average of 45 times per hour and the last study I had last winter was zero times with the machine. It is hard getting used to the machine, though. My insurance covered a lot of the cost, but for me I still had to pay $30 per month for a year on a bipap. I think the total was about $4000. rkharmony@highstream.net


Blanche's June 2 reply to Vicki J's June 1, 2004 - Hi Vicki, I had a biventricular pacemaker implanted July of 2003 and had a mammogram the following October. The technicians were careful and considerate of my still-somewhat soreness, but managed to get a picture of at least the lower half of the breast. I hope this helps, and bestest to you. bna104@msn.com


Sandy's June 2 reply to Jon's June 1, 2004 - Hi Jon, Thanks for your input on ginseng. I did speak with a nutritionist and he said basically the same thing. What he did recommend was Hawthorne berries. Could you give me your opinion on using this? As always, thank you for all your help. bleuskiiisgrl@yahoo.com


Jon's June 2 reply to Sandy's June 2, 2004 - Hi Sandy, I'm no expert. The short version is that Hawthorne may help and as far as I know poses no real dangers. It does have a mild diuretic effect. If I'm wrong, someone please correct me! Again, if you are going to have surgery, tell your anesthesiologist you are taking it! Jon.


Lori K, June 2, 2004 - Hi, I am looking for some advice on how to take both Coreg and Altace twice a day and keep them 2 hours apart and make it work well. I used to take Altace at 9:00 AM and 9:00 PM, and Zebeta in the evening (my old beta-blocker). Now I flipped Coreg to 7:30 AM and 7:30 PM and Altace to 11:00 AM and 11:00 PM. I am not feeling too well from the switch and am hoping this will just get better in time. I am shaky, dizzy, and have stomach upset. I take the Coreg with meals. Thanks for any ideas. Lori K. thegoof86d@aol.com


Jon, June 3, 2004 - Hi everyone, Here's the quote for the day: "Just because the weatherman says it is going to rain does not mean that he is against sunshine." Jay Belsky Jon.


Scott Brown's June 3 reply to Lori K's June 2, 2004 - Hi Lori, Is there a reason you have to take Altace twice a day? Shouldn't one 10mg dose last 24 hours? Cardiologists usually tell you to take it before bed because it can have side effects.
     Can I assume from your e-mail you are just starting Coreg? If so, the Altace may have nothing to do with your problems. Coreg takes several weeks at each dose to tolerate. This is extremely common and seems to happen to almost everyone. On the positive side, once you get used to it, it really seems to help with long-term quality of life and mortality. Thanks, Scott B. kitchenerguy@hotmail.com


Renee, June 3, 2004 - Hi, We've been told that my husband needs an ICD. The electrophysiologist is telling us that most insurances don't pay for this procedure. He has Kaiser Permanente and they have been great about paying so far. Is he right about insurances not paying and if so, how do so many people have this done? Frankie hasn't been able to work since January of this year. We cannot pay for this ourselves! Is there any help out there? Reneew4103@aol.com
 
Jon's note: If it was me, I would get the electrophysiologist to officially call the ICD implant an immediate "medical necessity" (in your husband's chart as well) and call the insurer and find out.


Jon, June 5, 2004 - Hi everyone, I was updating pages, and overhauling the ACE inhibitor pages yesterday and burned out my brain before I got to posts - sorry! Here's the daily quote: "The greatest crime is not the immediate act of theft, or violence, or enforcement. It is that the act has made necessary a government and a police force to deal with the individuals who give in to the impulse to grab, or force, or hit." A. E. vanVogt. That's one way to look at it, don't ya know?! Jon.


Alexandra's June 5 reply to Sandy's June 1, 2004 - Hi, Thank you for the info. We are waiting until fall to come, but then the U-Haul rates are sky high because of all the snowbirds. Oh well, if I reserve soon maybe I can get a deal. Good health to everyone. I hope everyone had a great holiday weekend. jakethesnake56@aol.com


James' June 5 reply to Renee's June 3, 2004 - Hi Renee, Mine was covered by Humana-ChoiceCare. We had a $200 co-pay on a $100,000 bill. jnj@spamcop.net


Greta's June 5 reply to Jon's March 18, 2004 - Hi Jon, Yeah, I know my "reply to a message" date is a bit off. I haven't posted to the site in many, many months; been reading it regularly though. I got kind of behind in my reading for the past several months and just caught up with your post on March 18th concerning body aches.
     I have had CHF since December of 2002. I just began experiencing this new symptom in the past 4 months. I thought it was just Arkansas weather - you know, the humidity and all. It did ease up some when we went on vacation May 15th and traveled to California. It returned with a vengeance when we got back to Arkansas. So, I'm thinking the humidity contributes to the overall achy feeling. When I first wake up in the mornings, I feel like somebody has used me for a punching bag. Like you, my bones ache so badly. Trying to sleep in is not an option because when I wake up I hurt so badly the only remedy is getting up. After I move around awhile the aching lets up.
     Seeing my CHF doc the first of next month and I am going to hit him with this new development and see what he says. I am looking for a new med to help me sleep, do you have any recommendations? Blessings, Greta. gjohnson@arkansas.net


Jon's June 5 reply to Greta's June 5, 2004 - Hi Greta, On the muscle aching and bone pain, I have seen improvement. I now take a healthy dose of L-carnitine (1g), taurine (1g) and creatine (5g) every day. My current supplement (I just switched) also has a lot of other amino acids in it. If the manufacturer would juggle some of the amounts and add CoQ10, they'd have a great heart failure supplement. <g> I have no idea why this helps the bone pain or if the improvement is unrelated, but the timing is there. Now I only have weight-training related muscle aches and pains, which I expect.
     For insomnia, I have excellent luck taking 0.125mg triazolam (Halcion) one hour before bed when I think I might have problems - about 2 to 3 times a week now. Ambien makes me sleepier faster but in 2 days, it no longer works for me. Jon.


James' June 5 reply to Sandy's June 2, 2004 - Hi, I use hawthorne regularly. There are a few warnings on it, most notably when taking digitalis (digoxin) but otherwise it's generally regarded as safe from what I've read. I found a decent write up on it at http://www.springboard4health.com/notebook/herbs_hawthorne.html that also mentions hawthorne's effects may be reduced when taken along with spironolactone or triamterene. jnj@spamcop.net


Lydia Moore, June 5, 2004 - Hello everybody, It has been a long time since I have posted, but I read the posts quite often. On telling the kids, my children were in their early thirties when they found out. I am pretty sure my girls know the details about heart failure, but I am not too sure about my son and my mom. I know it is hard for my mom, and she really does not like to talk about it. My siblings know all the details about heart failure. I have 11 grandchildren. The three oldest know I have CHF and they worry. I have always felt that it is better to mention things that are serious, because if they should hear anything in other people's conversations, they may not say anything. That would be worse on them emotionally. Then again, those are my feelings on the subject. I also think that asking for God's guidance is the best thing anyone can do in everything.
     I was also wondering if anyone gets droopy eyelids at times. Maybe it is excess water? I don't know, but I know my eyes feel heavy when I have this. If anyone has experienced this, I would really appreciate a response. I wish everyone here well. God bless, Lydia. Flanders48@msn.com


Alexandra's June 5 reply to Renee's June 3, 2004 - Hi, I agree with Jon about having your doctor stating the device is "medically necessary." I did not have insurance at the time of my pacer implant due to my husband being disabled from falling from a roof. We had our own business and couldn't afford any more insurance payments. I was approved for State Funded Medical Assistance and they paid for my device and procedure, and they usually don't pay for much. I have not heard of any insurances not covering the device. Good luck, health and happiness! jakethesnake56@aol.com


Mike, June 5, 2004 - Hi folks, It's been awhile since I stopped by here. As in the past I would like to say this is wonderful source of information for those of us with CHF and my hat as always is off to efforts being made here. My condition is an enlarged heart and CHF, a condition I have had for over 8 years now. I have been on SSD for a bit over 2 years now, having applied for it almost 3 years ago when I was unable to continue working.
     When I first started down the road with SSA all those years ago, one thing that was uppermost on my mind was that once qualified, I would get proper medical treatment for my condition. After the 8 months it took to get on SSD I thought I would get either Medicare or Medicaid but was disappointed to find that my monthly SSD payment was $103 over the Medicaid earnings cap and that there was a 2-year waiting period for Medicare, which left me paying for all medical treatment out of pocket for the past 2 years.
     I have had mixed results due to the high cost of medications and I am sure you folks will understand that. Doctor visits have been limited to the bare minimum just to maintain my prescriptions. That has not always worked because on months when I had to see the doctor, I would not have the money left to fill the prescriptions he wrote. Due to this I have been hospitalized a couple of times.
     I have been down the road and back when it comes to getting some form of aid having seen everyone from my local social workers to my US Congressman. I have been down the free clinic road, the VA road, the appeals to the drug companies road, the buying my meds overseas road, and on and on the list goes. Every single program that has been suggested to me I have tried but earnings caps have always stopped me from getting any help.
     A couple of months ago I finally got on Medicare and I thought my problems were solved once and for all but it has turned out to put me in a place far worse than I was in before. I have all but given up. To boil it down simply, the monthly premiums for Medicare come to about half what I needed to buy my drugs each month and the benefit I get from Medicare is almost none. The premiums come to almost $800 a year and my savings, once deductables and co-payments are figured in, is $32 a year or a net loss of around $760 a year.
     I now have half as much to spend on my medications as I did before I went on Medicare and as for hospital coverage to me it is almost useless since I have been wiped out of assets for years now and having been already sued a number of times, the only benefit I see to the hospitals that now charge Medicare for 80% of my costs per visit, which will certainly increase now that I cannot afford my medications.
     When I went to see my doctor right after being on Medicare and found that they wanted a large cash payment for the visit and tests they wanted to run, I turned around and walked out and have not been back again. My meds have all but run out and I do not intend to do anything about that nor do I have the resources to do anything about that. I have run out of programs to apply to and even if one popped up now I'm not even sure I could work up the interest to go jumping through more hoops only to hit dead ends after months of waiting.
     I think my problem now is depression, as you may already have figured out. After all these years of waiting for proper medical treatment for my condition that is not paid out of pocket, to find it has all been a scam, is just too much to deal with. I am done with doctors, governments, greedy drug companies, and politicians who only care about getting re-elected and not about the welfare of the citizens of this country.
     Even the new drug discount program from what I can tell is a joke. Once filling out the information on the Medicare web site I found that I qualify for over a hundred different cards but almost no information was given to help me figure out which was best for me. Almost all of them just say to contact the issuer for details, which to me was the whole point of what the site was suppose to do for me.
     At any rate I have rambled on more than I should. For those of you who have not fallen through the cracks, I wish you the very best. As for me, I am sure that a hospital visit and the ventilator will soon be in my future, yet again assuming I can get up the courage to make a 911 call one more time. I would like to end this post on a positive note but frankly I can't think of one. Mike. nobackup@cs.com


Roberta, June 5, 2004 - Hi, I guess I knew there would be a Part 2, so here it is. I didn't expect to hear anything about my results from the holiday weekend study for several weeks, because that's what I was told up front. Imagine my surprise when the sleep doc himself (a board certified cardiologist - I checked) rings me up at work this past Wednesday and tells me that he needs more data with me using the CPAP. He wants me to try a home study. He also told me that in the "before" part of the study I stopped breathing an average of 29 times per hour, which he described as moderate. In his world maybe but it sure sounds extreme to me! <lol>
     While I'm trying to digest this info, I forget to ask him how long these stops lasted, which I'm sure is also key in deciding how severe the apnea is. Plus, I live in cubicle-world at work with absolutely no privacy so I'm trying to ask questions and respond to his remarks without broadcasting my medical stuff to all the fellow cube-dwellers in my neighborhood. Anyhoo, the sleep doc wraps up by stating that a tech will call me back to work out the details.
     Now I'm using the CPAP this weekend, having picked it up yesterday after work. Thankfully there are no electrodes or adhesives involved! Well, there is that little clip-on that I have to wear on my finger to measure oxygen levels. I can't say that I got a lot of restful sleep last night but at least I know I dozed a lot more than I did when I was trying to sleep at the sleep center. This mask fit better but it was still uncomfortable.
     I was a little distracted eyeballing the readout on the little oxygen monitor. As I tossed and turned through the night, I noticed that when I was on my back, my O2 level ranged between 97 and 92. When on my side, the way I usually sleep (at least that's how I fall asleep), the level was between 90 and 81. I don't know if this has more to do with the fit of the mask, or about my body's general ability to move air in and out.
     Anyway, I will have a lot of questions by the time I drop the CPAP equipment off Monday. I am making my list now. In one of the brochures I leafed through in the waiting room the day of my first consult, I remember reading that incorrect use of the CPAP could have adverse consequences. Of course the article didn't elaborate, so I've got to do some more research. I don't know if a weekend will be long enough to give me a hint about how effective CPAP would be for me. I would hope to feel a lot fresher and rested but if last night is any indication, I'm not impressed.
     Can any of you out there share your adjustment stories? Since fatigue is such a big part of my CHF, maybe I'm expecting too much from the CPAP. Should I be looking at this with the idea that I may feel that much better but I should use it anyway because it's good for my body? notinksnemr1@aol.com


Heidi, June 5, 2004 - Hi, I was just diagnosed with right-sided CHF and my PCP put me on 50mg Aldactone (spironolactone) and I am already on Ramipril 5 mg and HCT 25mg and albuterol for my shortness of breath. My thyroid is 175mg and I am doing just fine and then IB 800mg twice a day for pain but what will this Aldactone do for me since I am already on HCT?
     I just am geting all this diagonsed and an echo showed not enough blood going through my pulmonary artery. I have leg and ankle swelling, and shortness of breath. My doctor told me no housework or yardwork till the other tests are done on June 16th. It sounds bad in there because I have a high risk for another heart attack. I had one in the operating room in 1999 then a silent one in November of 2003. My total cholesterol count is 200, with HDL 51 and LDL 135. I take no statin yet. I am told my triglycerides are 64 and my CRP is 0.22. I need to lose 12 pounds down to 130.
     I was wondering abut this drug interfering with my other diuretic. Heidi. salhll@hotmail.com


Renee, June 5, 2004 - Hi, Thanks everyone that answered. It gives me hope that we can get this procedure paid for. Having names of insurances that have paid might give me the leverage I need. He sees the doctor Thursday and I'll be sure to discuss this information with him. Reneew4103@aol.com


Sandy T's June 6 reply to Mike's June 5, 2004 - Hi Mike, I have read your e-mail and I can say I have had some problems similar to yours. I was diagnosed with CHF in February of 2004. I was in the Kansas heart hospital for one week. The problems you have with going to the doctor and getting meds are very discouraging but I have some ideas I hope can help you. There are med programs out there. Some are hard to find if you don't know where to look. Here's a web site that helped me get a lot of my very needed meds: www.rxassist.org. You look up the name of your med and it will tell you the company that makes it with info on how to get a application or you can copy it on a printer and send it in after you see a doctor and he signs it.
     Also, if you live in a city where there are walk-in clinics, tell them your situation and you can see a doctor usually for only 15 dollars. They might also help you with meds. One final thing I might mention is that there are Medicare supplement insurances that would help on your Medicare deductibles if you feel like you could afford them.
     Don't give up, Mike. I know this world can cause a lot of problems, especially if you're disabled. I hope this info will help you. Please e-mail back when you can. kimilee56@hotmail.com


Sharon's June 7 reply to Heidi's June 5, 2004 - Hi Heidi, I take Lasix 20mg and Aldactone (spironolactone) 25mg every day. They are both diuretics and work on different areas of the kidney to help with getting of fluid. Aldactone is, from what I understand, a good drug to take for CHFers and my cardiologist took me off HCT and put me on Aldactone and then added Lasix.
     As for sleep studies, I had my last one July 2nd and have had almost a full year of sleeping with my friend the CPAP. It was covered by our provincial "Aids for Independent Living" program and I had to buy my own headset, which also was covered by my extended health benefits package from work. I have "hypopnea" as opposed to "apnea" which means for some reason I don't get enough oxygen when I sleep - is it my weak heart? Who knows.
     I now sleep for as many as 7 hours in a row and only wake up a few times per night if the thing gets out of place and hisses. I have the headset that looks like an oxygen cannula as opposed to the one that looks like a pilot's oxygen set up. I have several friends starting out with CPAP who have really noticed a difference in their sleep. I love my CPAP.
     Also good news for me, my EF has gone from 42 to 45% in a year. lyons@sasktel.net
 
Jon's note: A note on Aldactone - At the 25mg dose, it has no diuretic effect, but it does significantly reduce risk of death for CHFers at this dose because it reduces the effects of a hormone called aldosterone. A new drug called eplerenone (Inspra) has fewer side effects. Click the link above for more info.


Lori K's June 7 reply to Scott Brown's June 3, 2004 - Hey Scott, My CHF doc says Altace is usually twice a day in heart failure, once a day for high blood pressure. I take 5mg in the morning and 10mg at bedtime. I had mild hypertension before my CM. I just switched to Coreg from Zebeta (another beta-blocker) and I have had 5 days of feeling like junk. I am very dizzy even though my blood pressure is about the same as before Coreg, and my heart rate is actually higher. I am also more SOB than I was on Zebeta.
     I am going to still go up on the dose and see how it goes, but it really stinks so far. I have a 5-1/2 year old boy to take care of and a husband who travels (no family here), so too much down time is tough. Thanks for the advice on hanging in there, I am going to give it my best shot! My doc likes the Coreg stats on reduction in mortality and that's why I am trying it. Lori K. thegoof86d@aol.com
 
Jon's note: See www.chfpatients.com/faq/target_dose.htm for more on dosing of CHF meds.


Lori K's June 7 reply to Mike's June 5, 2004 - Hi Mike, I read your post and speaking as a past drug company employee and a patient with cardiomyopathy, I wanted to give you some info. Most drug companies have free samples as well as financial assistance programs. You need to ask your doctor for "compassionate use drug." That means you pay nothing and drug companies have these samples put aside for hardship cases.
     I worked with 2 drugs that cost 2000 dollars for 10 vials and believe me plenty of people could not afford the drugs or the patient part of the financial assistance programs. I supplied plenty of drug when asked by the specialists. Almost all the big companies do this. Your doctor may need to ask a local District Manager from the drug companies if the reps don't have supplies.
     I understand your frustration, like anything you just need to learn to "work" the system to your advantage. Don't give up. Feel free to e-mail me with any questions. Lori K. thegoof86d@aol.com


Marty's June 7 reply to Mike's June 5, 2004 - Hi Mike, I read your post and I related to much of the views on the "system" basically screwing us. All I can tell you is to hang in there, man! I was diagnosed with DCM and a-fib almost 7 years ago. I lost my career as a police Sergeant and fought workers' compensation for 4 years to gain med coverage under my state's heart presumption for law enforement. I was fortunate my wife worked full-time and her insurance picked up my care, at first. Then, they tried to dump me and told me to see workers' comp, which of course had told me to get lost.
     I got mad and I made it my life's goal to win workers' comp, which I did and now I get my treatment paid for 100%! I survived because I threatened to contact the media about my wife's insurer's threats to dump my treatment in the interim. I was going to show the public the heartless, money-grubbing company for what it was and what it was doing: Leaving me to die, a decorated local law enforcement officer and leave my wife with 3 small children. They backed down and paid up until I whipped workers' comp in my state's highest court.
     Please don't give up, Mike! I know things can seem terrible and often everything seems (and is) out to get you. Basically, they don't care if you die. Insurers would love to see you and me kick the bucket and save them a few bucks. Don't ever give them the satisfaction - hang in there and survive. I will add you to my prayers, Mike, because it was my appeals to Jesus that have been answered in full. There is power there Mike, prayer can show you the way. Martinpbk@aol.com


Norma, June 7, 2004 - Hi, Having just survived the annual trip home to Canada from my winter home in Florida, thought I would add a couple of words about Hawthorne. I truly believe it has helped me tremendously since being diagnosed with CHF in 1996. I read about it through my subscriptions to various alternative health magazines. I put myself on 200mg per day, one capsule in the morning and one in the evening. Together with digoxin (Lanoxin), Cozaar, Aldactone (spironolactone), CoQ10, vitamins C and E, plus a multi-vitamin, I have remained stable despite having a very low EF of around 20 to 22%. If I can still handle a road trip of 1400 miles without any adverse health effects, I would say Hawthorne plays a large part in keeping me stable.
     I have never had any trouble taking Hawthorne as well as digitalis, but never take the two at the same time of day - digitalis in the morning and Hawthorne noon and evening. Having not seen a doctor or cardiologist for 6 months, I am hoping that my next echocardiogram will show I am holding my own.
     It is my belief that too many tests are harmful and I have always resisted any. Just my opinion of course, but the best medicine I have found is common sense. Know when you are overtired and make yourself rest. Never stand when you can sit down and never sit down if you can lie with your feet up! And thank God each night for a good day. Love and best wishes to all. Norma. normadroz@aol.com


Roger's June 7 reply to Roberta's June 5, 2004 - Hi, I'll have to admit that it will take awhile to adjust to having the mask on and the long hose. I was told that even just a few hours at a time will be good. I had good techs to work with. I put the hose between the headboard and the matress, then over the pillow to kind of hold it in place. I have to wear a chin strap also cause when I sleep, my jaw tends to drop. I'm with the strap and the mask, and my wife says I look like Lloyd Bridges on Seahunt from way back when.
     You'll just have to play with the straps to get them adjusted. I feel much better since using the machine. Now I don't fall asleep standing at work or driving on the way home in the morning like I used to. Even now, if I don't get enough time on the machine I'll get a little sleepy on the way home - not good! As I lost weight - even 10 lbs - I had to get the machine readjusted because the pressure the way it was, felt like it was going to blow my eyes from their sockets. I only had about 20 lbs to lose to get to my ideal weight. If you need any more info, feel free to ask. rkharmony@highstream.net


James' June 7 reply to Roberta's June 5, 2004 - Hi Roberta, You should look for a board certified sleep doctor and a board certified sleep lab. A certified sleep clinic/doctor would not send you home with a CPAP and SO2 sensor to try.
     After a sleep study to determine if obstructive apnea is present, there should be a second study called a titration. During this study, performed at the sleep lab, the patient is hooked up to sensors and placed on an xPAP (CPAP, BiPAP, whichever). A technician observes the sleeping patient and adjusts the pressure on the CPAP until all apneas and hypopneas are no longer present. The following morning the patient goes home with their new xPAP preset to the pressure at which those events no longer occur.
     There is no "average" pressure and having a patient self-monitor his/her own titration doesn't work. One should not play guesswork on the pressure. As you note, incorrect use of a CPAP can have serious consequences. Proper use with accurate settings, can and will have a dramatic effect. In some cases, CHF can actually be caused by sleep apnea. jnj@spamcop.net


Jon, June 7, 2004 - Hi everyone, Here's that quote for the day: "The most important thing a father can do for his children is to love their mother." Theodore Hesburgh. Jon.


Donna H, June 8, 2004 - Hi, I can't find the link to the loved ones site so am posting this here and hoping you will move it. (Jon's Note - The Beat Goes On is now this one message board. See the top of the page. If you want to read the posts remaining on the old loved ones' board, go to www.chfpatients.com/heartforum2.htm.)
     My husband's health improved dramatically 18 months ago after the doctors put in a pacemaker. About March of this year though, he began to feel bad. At first we thought his meds needed to be adjusted since he has lost about 50 pounds. They cut his Coreg by a third, his Lasix by half, and took away his montekaste(?). He is still achy, has an upset stomach, is weak, and has low blood pressure.
     I have taken him to the emergency room twice and he has been to see his PCP but couldn't get in to see a cardiologist until July. Recently he also began complaining of a feeling of pressure in his arms, head and neck. I took him to the emergency room Thursday and he is still in the hospital.
     So far, all the nurses and doctors just say that his numbers look good. The highest his blood pressure has been this weekend was 111/74. Tomorrow they plan to do a stress test but he can't tolerate the physical test or the regular chemical one so they are planning on a third kind that we know nothing about. They may also do a heart cath though he has never had any signs of blockage.
     His last heart cath was when they put in the pacemaker and his EF was around 40%. His diagnosis, as far as I can remember was cardiomyopathy, a-fib, ischemic heart tissue, and a leaking mitral valve. I am probably missing something but only understand about half of what the doctors say!
     Has anyone else had trouble with nausea and low blood pressure, or pressure in arms and neck? The doctors don't seem terribly concerned and I don't want him to come home until we find some answers. Thanks for any suggestions. herdrich@grm.net


Neil A, June 8, 2004 - Hi, Thanks to Jon and all of you. This a phenomenal web site that I discovered by accident. My higher power was watching out for me when I did a search. I have cardiomyopathy and the resources here are just outstanding. How this was all put together over the years is mind boggling. I've been a webmaster since 1996 and I've never seen such a resource like this. With that said, I have a few items to add that you may not have heard of.
     As a recovering alcoholic, one book and the web site at www.healthrecovery.com have been my bible for a decade. See Joan Mathews-Larson's book, "Seven Weeks to Sobriety." I've been getting all of my vitamins and supplements there for a decade or more. I believe Dr. Joan has really gone out of her way to get the best and most beneficial and purest chemicals available on the market.
     Another web site that is my second bible is www.drweil.com. Four years ago he taught me how to reduce my cholesterol by eating a handful of walnuts a day. After 8 months of doing this I was able to get off Lipitor. It wasn't just the walnuts - the key is omega 3s. He doesn't so much illustrate this on the web site. It was in one of his first books.
     Something else is lycopene. The major food sources of lycopene are tomato-based products. Other good sources are watermelon, guava, papaya, apricots, and blood oranges. I read that a study from the University of North Carolina at Chapel Hill declared that men who consumed a lycopene-rich diet were half as likely to suffer a heart attack as those who had little or no lycopene in their diets. I get mine at www.vitapurity.com. It is also supposed to be good for the prostate.
     Recently I introduced shiitake mushrooms to my diet. I read that one Japanese experiment showed that eating 90 grams (about 3 ounces) of fresh shiitake a day lowered blood cholesterol 12 points in a week and that it counteracted cholesterol increases caused by adding butter to the diet. Shiitakes may also have antiviral and anticancer effects.
     Another something new I learned of late - although I can't find the url - is that Spanish peanuts (with the red skin) - have antioxidant properties; the shell or skin that we used to discard as kids. Eat all nuts in moderation of course.
     Lasly, because of genetics and alcohol abuse over the years, I was diagnosed with cardiomyopathy and CHF a year ago with an EF of 15%. Last week's echo showed no improvement but the drug cocktail I'm taking is keeping me alive. I have much to learn and many life style changes to make. This web site - CHFpatients.com - will assist me tremendously. I am presently taking Coreg 25mg twice a day, digoxin 0.125mg, Lasix 40mg twice a day, and Lisinopril 10mg. My biggest problem with these meds is blurred vision. That's the most uncomfortable side effect that I have experienced.
     Now I will improve on my regimentation of CoQ10, lycopene, taurine, L-arginine, L-carnitine and other recommendations that I've read on this site. I am not taking any cholesterol medications and for years I have been pharmacologically resistant to treatment or pharmacologically-resistant to meds for anxiety and depression. I've always had to take the nutritional approach for assistance. I no longer drink nor smoke.
     God bless. webmaster@ahern.com


Gene's June 8 reply to Roger's June 7, 2004 - Hi, About CPAP masks, I have tried both the facial mask (like airplane pilots use) and the nasal "pillows" type delivery system also. My wife just ran across a new delivery concept that is like the nasal pillows but without all the head straps. I haven't used it myself and don't know if it has been cleared by the FDA. It secures in place by means of a mouthpiece that never moves in relation to your nostrils, so supposedly it has less leaks, etc. Just for your information, the name of the mask is the CPAP PRO and the web site is www.cpappro.com/. gene.goorchenko@genzyme.com


Dorothy's June 8 reply to Lydia Moore's June 5, 2004 - Hi Lydia, You might check out "blepharitis." Didn't know you have "blephs?!" (just teasing - I'm certainly not a doc but do I think "itis" is inflammation.) Anyhow, the solution to my problem is to use hot water to wet a washcloth and dab some baby shampoo on it, close my eyes and scrub my eyelids with the washcloth. I then rinse the washcloth and hold it against my eyelids for 2 or 3 minutes. I repeat this scrub morning and bedtime. It works for me. In fact, my eyelids "remind" me if I do forget; they feel tight and the scrub gives immediate relief.
     My symptoms: at night include any light source (oncoming traffic, street lights, porch lights, etc.) having a halo around them. The day the menu offerings of a drive-in fast food appeared to be underwater (wavy and very hard to read) scared me. I made an appointment with my eye doc and he gave me the diagnosis and cure. I know one other person who has had a similiar experience (a young man in his early 20s whose eyes would literally close) and the baby shampoo treatment also resolved his problem. I hope your cure is this simple!
     I'm a fellow CHFer who was diagnosed at age 54 in 2001 when I was very short of breath, had ankles swollen the size of elephant's knees and spent 5 days in the hospital. The cardiologist's diagnosis: "You have congestive heart failure. You are a perfect heart transplant patient." He got my attention. My reply was "I don't think so! You can put that option at the very bottom of your list."
     Fortunately for me, I found Jon's site and found that there really is hope. I give credit to faith in God, prayers, meds, a low-sodium diet, and daily exercise for my ejection fraction improving from 24% to 54%! Best wishes to each of you. DPowell806@aol.com


Dorothy's June 8 reply to Pam V's May 18 (loved ones' forum), 2004 - Hi Pam, There are a few tips I would like to share with you. I am in no way affiliated with Taste of Home's magazine "Light & Tasty" but have found their recipes easy to use and the nutritional analysis and diabetic exchange information following each recipe excellent.
     Need more info? Try www.nih.gov and click on "Health Information." You can also help your husband by using the Nutrition Facts found on food labels when shopping. Look under the Total Carbohydrate section for those with 4 grams of sugar or less per serving. Also, be sure to check the amount shown for a serving under the Nutrition Facts section of the label.
     I have found Splenda to be an excellent sugar substitute too. I hope these tips help. I am a retired county extension agent with a Master's Degree in Home Economics Education from Texas Tech University and 28 years of work experience with the Texas A&M University system. Dorothy. DPowell806@aol.com


Theresa, June 8, 2004 - Hi, I'm new to the forum and grateful, so grateful, for this web site, especially the information about low-sodium diet and the recipes.
     Does anyone live in Rhode Island who would recommend a CHF specialist? I like my doctor, but he didn't even tell me that I should be on a low-sodium diet. Thanks. prescott3@cox.net


Jon, June 10, 2004 - Hi everyone, Posts are going up a little slowly. I am completely updating and rewriting my heart info pages in sets of three, and it is eating every minute I have. Please bear with me. The rewrites will make the articles a little easier to understand, a bit shorter, yet with more basic information. It's also necessary to make room for all the new articles.
     The quote for the day: "One must never fail to pronounce moral judgment. Nothing can corrupt and disintegrate a culture or a man's character as thoroughly as does the idea that one must never pass moral judgment on others, that one must be morally tolerant of anything, that the good consists of never distinguishing good from evil." Ayn Rand. Jon.


Doris, June 10, 2004 - Hi, Can someone help me? What brand of hand lotions and moisturizing creams are the best? Thanks. sallen@insightbb.com


Sandy, June 10, 2004 - Hi Everyone, I wanted to let you know that I had my monthly doctor visit yesterday. I was told to "keep up whatever it is I'm doing" because I'm doing great! Yes, I still have those tired days but I'm feeling better than I have for quite some time.
     From being diagnosed in February of this year, I have brought my EF up from 12% to 25%. I can say it's all due to my doctors' care and my finding this board. I would never have known that my staying as healthy as possible was mostly due to my watching what I do. I cannot rely fully on the care of a doctor but to do what I have learned from all your posts and experience with CHF. Each of us has to find our own way with this nasty disease.
     My next doctor visit is in 3 months now. Isn't life wonderful?! Thank you all and thank you Jon. bleuskiiisgrl@yahoo.com


Chelle, June 10, 2004 - Hi, My mom died yesterday after nearly 10 years of CHF. She was only 45 years old. I am her eldest child, age 23. My dad is not doing well and I am having to plan the funeral, write the obituary, and care for my sister, who is 14. She received Social Security every month for her and for my sister. What happens with that now, and how do I go about it?
     My mother's name is on the mortgate along with my father's. I overheard once that should one of them die, the house will be paid for. I'm not sure what to do on these topics and I don't want to be the only adult right now. Please tell me what all I need to do. chellebelle0880@yahoo.com


Sandy's June 10 reply to Stephanie's May 21 (loved ones forum), 2004 - Hi Stephanie. I'm about your mom's age and found out that living alone is not a good idea. If you're able or you have a brother or sister that can help, live near your mom, or let her live with you.
     We (having CHF) have good days and bad days, and it's not easy to do this alone. A good support system is a huge help to our well being. I'm happy to say that my family rallied around me and now I'm so much better and can deal with what is ahead. One day at a time!
     Talk to your mom and let her see that you truly care and want to help. She is young and has many good years ahead. Good luck to both of you! bleuskiiisgrl@yahoo.com


Pat H's June 10 reply to Neil A's June 8, 2004 - Hey Neil, I was having some blurry vision from the meds, and using artificial tears helped a lot. It turned out the blurriness was from dry eyes. This may not be your issue, but it's worth a try. mondays_child_1@yahoo.com


Vicki J's June 10 reply to Donna H's June 8, 2004 - Hi Donna, I have class 3 CHF which seems to run in my family. I have no clogged arteries, a virus seems to have caused it. I'm 49 and have always worked, ridden horses and led an active life. Then I got to where I couldn't climb stairs and was always out of breath. My dad died with the same type - viral.
     The nausea is what really got to me. My PCP prescribed 50mg Phenergan and it didn't do a thing for me. I just had an upper GI (reflux, gastritis, gerd). I asked this doctor for something yesterday for nausea and he prescribed Compazine 10mg (the generic is prochlorperazine). It has worked wonders. Yesterday I thought I was dying I was so sick but within a couple of hours after taking this, I felt wonderful.
     I had an ICD implanted January 19 because my heart was stopping. The pacer part isn't working right because my heart's beating faster than the pacer's settings.
     My CHF specialist wants to keep my blood pressure low so my heart doesn't have to work as hard. He has increased my Coreg to 37.5mg twice a day also to relieve the work load on my heart. This terrible disease seems to affect everyone differently.
     A quick fix for nausea that an old gentleman told me to try is to sip dill pickle juice. It helps me but be aware of all the salt in it. God bless and remember He is always with you. vj6464@aol.com


Larry O'Conner, June 10, 2004 - Hi, I have read that higher-dose vitamin C may cause atherosclerosis. Is this true? I take one gram a day and do so because I thought it was the healthy thing to do. Also, I have read that there should be 2 hours between taking an ACE inhibitor and a beta-blocker. My cardiologist said nothing to me about this. Any comments would be appreciated. loconnor33@rogers.com


Jon's June 10 reply to Vicki J's June 10, 2004 - Hi Vicki, Did you have a heart biopsy that showed antibodies to a specific virus in your heart tissue? If not, you and your father may have a case of familial cardiomyopathy - a genetic tendency to CHF. I'd look into it. Jon.


Jon's June 10 reply to Larry O'Conner's June 10, 2004 - Hi Larry, It is usually fine to take your ACE inhibitor and beta-blocker together; I do so every day. However, if your blood pressure drops when you do this (lightheadedness, increased fatigue), then space them a couple of hours apart. If your ACE inhibitor is once-a-day, just take it right before you go to bed to avoid side effects.
     One gram vitamin C daily is not a mega-dose so it should be fine. Someone please correct me if not. Jon.


Richard, June 11, 2004 - Hi, I know this will sound crazy but here it is. About 3 months ago my ankles were full of water and very large. One night I ate a lot of watermelon, and that night I went to the bathroom about 6 times and when I woke up in the morning my ankles were normal. I did this one more time and had the same results. Has this happened to anyone else? Malczewski@attbbi.com


Lori K, June 11, 2004 - Hi everyone, I was just wondering if anyone has experienced extreme shakiness while being titrated on Coreg. I switched from Zebeta to Coreg a week and a half ago. My blood pressure is up a little (130/80) and my pulse is in the 80s and 90s compared to a steady 60 on Zebeta. I am on 6.25mg Coreg twice daily.
     I feel like I have had 10 cups of coffee to drink each day. It's an awful feeling. Does this sound familiar? I can't tell if my heart is worse from the change over, or if the drug is doing this! Thanks for any input. Lori K. thegoof86d@aol.com


Jon's June 11 reply to Lori K's June 11, 2004 - Hi Lori, This is just a guess. If you came off target dose of one beta-blocker to a lower dose of Coreg to start, your beta receptors are getting more activity - until you reach target dose of Coreg. It can be a very nasty experience. If the symptoms last much over a week, I'd complain to my doctor. I'd also appreciate other opinions since it's been awhile since I went through this.
     Here's the quote for the day: "Over and over I've made my heart a den of thieves; Inviting sorrow to pitch a tent and have its way with me." Third Floor Thursday. Something to avoid. <g> Jon.


Rosamond Sanderson's June 11 reply to Chelle's June 10, 2004 - My Dear Chelle, May I write as your grandmother? I am sincerely sorry to read of the death of your young mother, and of the hopelessness you must now feel. You will feel this loss for a long time but you are asking for help right now for all the things that need doing now.
     First, I would seek counsel. If you have a trusted pastor or priest, ask for help. The minister has had much experience with death and all its ramifications. He may recommend a lawyer who has dealt with your family.
     Second, your mother's physician has probably recommended a funeral home and the personnel there, knowing your financial circumstances can be of great help in arranging things accordingly and they can also help with the difficult task of writing that obituary.
     Most importantly, caring for your little sister: Her school may help with advice from the school counselor. Try to remember what it felt like to be her age and to need a mother so desperately; being a help to her may help to ease your pain. I hope you have some loving relatives. Call on them for anything.
     It is dreadful to have to be an adult when you are still so very young, Chelle, but there will come a time when you will feel strong from having had to go through this. I wish you strength, and if "love" from a stranger is of any help, I send you a grandmother's hug, and a hope that the above words may have helped a little. Sincerely, Rosamond Sanderson. rwarriston@AOL.com


Bill Ryan, June 11, 2004 - Hi, I saw the doctor yesterday. He said those nasty words no one wants to hear, "You need bypass surgery and mitral valve repairs. You face some added risk since you're 73 and diabetic with CHF." I had bypass before and my second MI a month ago. My lab work is: BUN 33, creatinine 1.5, albumin 3.4 and BNP 426. I will have a noninvasive nuclear perfusion test in 2 weeks. I do have a heart murmur.
     I am reluctant to take the risk of surgery and the rigors of another bypass experience, not forgetting my last one. I swore I would die rather than endure such a thing again. Would anyone offer up a guess at my prognosis with meds, diet changes and supplements, with no surgery? Please don't ask to insure my life. snap2_comic@yahoo.com


Donna H's June 11 reply to Vicki J's June 10, 2004 - Hi, Did they ever tell you what is causing your nausea? My husband thinks his hits when his blood pressure drops into the low 90s. He would like to keep his BP up but the doctors want to keep it lower to reduce the strain on his heart.
     He was in the hospital for a week but the only change they made to his medication was to raise his Lasix from 40mg once per day to twice per day. They couldn't do the chemical stress test that was planned because his heart was too weak. Instead they did an echo and told us that his EF has dropped to 10%.
     This morning a nurse called to tell me that he is not a candidate for one of the new pacemakers because he does not have a long QRS interval. Instead, they made an appointment in July to discuss the possibilty of heart transplant. At first my husband was very against that possibility but now has decided he will consider it.
     Now I am going to read all I can find about heart transplants. Thank goodness for this site! herdrich@grm.net


Greta's June 11 reply to Doris' June 10, 2004 - Hi Doris, Everyone will have an opinion as to the best lotions and moisturizers, and so do I. Here's my two cents worth. The Lasix (80mg daily) dries out my skin. Winter is much worse. For a long time I relied solely on hand lotion. The best I have found and I tried pretty much all of them, is Curel. Select the type that meets your needs.
     I have also just recently begun to use a body wash and have found that Aveeno Skin Relief Body Wash with Natural Colloidal Oatmeal does wonders for my dry skin. I follow it, after my shower, with Equate brand Body Oil that contains sesame oil. This combination works well for me. You may be different, so experiment till you find the right formula. Good luck and blessings, Greta. gjohnson@arkansas.net


Greta's June 11 reply to Chelle's June 10, 2004 - Hi Chelle, I am so sorry for your loss. I know you will miss your mother very much. Others who post to this site may have better suggestions for your "need help" questions. Right now you need to take one thing at a time to keep from feeling overwhelmed. I would address the Social Security issue by contacting your closest local office and speaking with a counselor. They should be able to help you, or direct you to the appropriate office to assist you.
     As for the mortgage, your dad surely has paperwork that will help you find a place to start. I would begin by contacting the mortgage company. I would also think your dad should have copies of the insurance policy (credit life is usually what it is called) that pays the house off at a time such as this.
     Hang in there. We are praying for you. We are just a key stroke away here. God bless. Greta. gjohnson@arkansas.net


Jon, June 12, 2004 - Here's the quote for the day: "When Demaratus was asked whether he held his tongue because he was a fool or for want of words, he replied, 'A fool cannot hold his tongue.' " Plutarch. Jon.


Valerie R's June 12 reply to Richard's June 11, 2004 - Hello, The Chinese use watermelon and tea made from white seeds as medicine. It can also act as a diuretic. You would think it wouldn't, because watermelon has a great deal of liquid, as does the tea. Val. vgrogers@aol.com


Susan B's June 12 reply to Doris' June 10, 2004 - Hi Doris, My husband's hands were dry before he became ill with DCM. The best thing we found for it is paraffin waxes. We brought a machine to melt the wax at home so he could wax his hands every week. You might give it a try. Good luck, Susan B. gbratcher@kc.rr.com
 
Jon's note: Is this like "canning wax?"


Art, June 12, 2004 - Hi, I am a CHFer for 7 plus years and I have had an ICD for about the same amount of time. I have VF/VT but recently I have become extremely tired with the least amount of exertion. My meds have not changed for the past several years and my cardiologist has suggested a biventricular resynchronization device to replace my 2-lead ICD. He says that this should improve my stamina and that my condition is worsening due to remodeling that has been taking place these past 7 years.
     Is there anyone out there that has had experience with this device? Any information would be appreciated. I have called up Medtronic, the manufacturer of the device, and have gotten their literature. Aenaval@aol.com


Kerry, June 12, 2004 - Hi, For anyone looking for a low cost source of Lipitor, try www.valuepharmaceuticals.com. Kerry. kp10@xtra.co.nz


Susan B's June 14 reply to Jon's June 12, 2004 - Hi Jon, No, it is not canning wax. It is a machine just like at the beauty shops to melt wax for your hands or feet. The wax is often sold at beauty supply places. We also have the plastic bag gloves and quilted mitts for hands. I just hand my feet done at a spa and they have mitts for feet too.
     The treatment makes your skin very soft. If your hands are very dry, like my husband's, you may want to do the treatment every week. My husband's hands were bleeding and cracking because they were so dry. This is the only thing that helps his hands heal in the winter. We have tried the cream before bed with the plastice goves and socks over his hands. We have tried every hand cream that we could. The hot wax treatment works the best.
     You should try it. If you want to try it before you invest (under $50) in the machine and the first batch of wax, then go to a beauty shop and get your hands done. At first, George would go to a beauty school to get it done. It was only like $5 plus tip and they put clear polish on his nails too, but now he can do the wax treatment whenever he wants and it really doesn't cost very much each time. Susan B. gbratcher@kc.rr.com
 
Jon's note: If I get desperate, I use good old bag balm.


Jim, June 14, 2004 - Hi, I have just been diagnosed with CHF. I am out of the hospital and am doing much better, however there are several meds that are making me feel like I am high or drunk, and anxious. Furosemide, spironolactone and metoprolol are what I take. Has anyone had this side effect? Is there anything I can do about it? I have talked to a nurse but not the doctor. She thinks it will go away but this has been going on for over a month. Jim. c2dog@hotmail.com


Roberta's June 14 reply to James' June 7, 2004 - Hi, I don't know if you saw my first post but I did in fact start out with an overnight study at a sleep study clinic. I don't know what's usual and customary, but from the way they described it to me, this clinic commonly tries to get the "before" and "after" parts done in one night. My problem was trouble with the fit of the mask, difficulty getting a good seal so the tech finally had the mask strapped so snugly that I developed a major headache and facial pain. The result was that I couldn't go back to sleep so there wasn't any "after" data for them to analyze during the second part of the night with me wearing the CPAP. That's why the cardiologist had me do a weekend at home with the equipment.
     I didn't actually have to monitor anything. The tech explained that when I return the equipment, the center takes the devices and downloads the data recorded during my at-home study. On Saturday and Sunday of my at-home study, the mask felt more manageable, so at least I wasn't totally put off by the idea of using one if that's what it's going to come down to.
     You make a good point about accreditation. Maybe you or someone else can clarify something for me. Am I right that it's the American Acadamy of Sleep Medicine (AASM) that grants accreditation to sleep study centers while the American Board of Sleep Medicine (ABSM) sets practice standards and grants certification to individual practitioners? My sleep doc is on the ABSM list of board certified practitioners in my state. Likewise, the sleep study center is listed as accredited by AASM.
     I'll be seeing my PCP this week, and also having a follow-up with the sleep study doc. It should be very informative. notinksnemr1@aol.com


Tony, June 14, 2004 - Hi all, I hope everyone has improved since the last time I posted. I'm the nut with CHF, a-fib and high blood pressure who has taken his BP around 6 times per day over the past 6 years. I've now got about 13,400 readings by hour and date. I've also kept notes with each entry. Lots of info. Whew!
     I've finally had a breakthrough in my symptoms and BP. Getting my condition under control has been very difficult and confusing but as a result of closely monitoring my condition and making changes, I've been able to reduce my meds and totally eliminate one of my BP meds. My BP and heart rhythm are better than ever.
     Among the changes that I've made: I don't take any two medicines within 2 hours of each other and that includes multi-vitamins. I also have found out that certain everyday chemicals change the way my medicines work within my body. I've totally eliminated all commerical fabric softeners and detergents. We rewashed all clothes, bedding and towels with baking soda; that has made a big difference. I've totally eliminated all artificial sweeteners; that has made a big difference. My heart rhythm problems and my BP are also affected by contact with dust, certain molds, calcium taken within 2 hours of my digoxin, newspaper inks, and many other allergens and irritants.
     Since I have found out that the fabric softeners, detergents and artificial sweeteners were affecting my symptoms and my medicines, and stopped using them, I feel much better, have more energy, less heart jumping, and lower BP. The improvements were very gradual since it takes the body several weeks or longer to withdraw from the chemicals in the sweeteners or the fabric softeners. I am not sure at this point that my body has totally been able to withdraw from those chemicals.
     My logging of my BP and symptoms has been greatly reduced since I no longer feel the need. I now take my BP from one to 2 times per day instead of around 6 times. I've even skipped a day or two and if my symptoms stay under control, my BP checking activity will get less active. I just wanted to pass this info on, just in case it could be of use to someone else. Regards to all, and good health! t0nyt@yahoo.com


Vicki J's June 14 reply to Lori K's June 11, 2004 - Hi Lori, I also have the shakes. Some days it's better, other days I can't even sign my name. I take 37.5mg of Coreg twice daily. They are trying to slow my heart down. However, I also take many more meds, too many to list. I think it's just the combination of meds and our nerves. I preferred to stay on Coreg because they told me that it would make the work load on my heart easier. I got an ICD in January of 2004 and am just now adjusting to the idea that this is going to be part of my life from now on. I'm trying to enjoy each day as it comes because we never know when there will be a tomorrow, whether by illness or accident. Best of luck and God's love. Vicki J. vj6464@aol.com


Blanche's June 14 reply to Art's June 12, 2004 - Hi, I had a biventricular pacemaker implanted about 12 months ago, and my quality of life is very improved. My doctor says not all people benefit from them, but I am delighted with my results. Good luck. bna104@msn.com


Vicki J's June 14 reply to Donna H's June 11, 2004 - Hi Donna, They never said what was causing the nausea but I developed diabetes after getting CHF. Whenever it gets into really low 40s or really high 300s I start feeing sick and the phenegren 50mg did nothing to help. My gastrointestinal doc called in compazine 10mg and it worked wonders. I had forgotten what it felt like to feel normal.
     They try to keep my blood pressure as low as possible to reduce the workload on my heart, about 100/70 or less. I take 320mg Lasix a day - I have a tendency to swell. My EF changes from around 25 to 35 and then goes back down. I don't feel any better. It's just like Jon says, if you overdo it one day you'll pay for it the next two. I'll keep you both in my prayers. Vicki J. vj6464@aol.com


Gene, June 14, 2004 - Hi, I have class 3 to 4 CHF. I have observed that, often when I drink a cola drink such as Coke or Pepsi, that my shortness of breath becomes markedly worse. I don't believe it is due to the caffeine since it occurs also with the decaffeinated cola drinks but not with a cup of coffee. It occurs with the diet versions as well as with the ones with sugar. Has anyone experienced this also or have any explanation?
     I don't believe it is related to the sodium content (only about 35mg) or just to fluid intake. I can drink other non-cola carbonated drinks and not have this effect. I do notice that cola drinks make the saliva in my mouth become more viscous, and perhaps they do the same to the fluid in my lungs? Any enlightenment would be appreciated. Thanks, Gene. gene.goorchenko@genzyme.com


Marly's June 14 reply to Art's June 12, 2004 - Hi Art, I am also a CHFer with IDCM for the past 10 years or so. I have been on a dual chamber pacemaker for the past 2 years and just upgraded to a biventricular pacemaker one this April since I felt worsening CHF symptoms with the 2-wire pacer.
     I now feel a bit more energy, less SOB and edema. I just had an A-V optimization using the bi-ventricular pacemaker and there was a 10% improvement over the unoptimized settings. My previous EF was around 10% and increased to around 20% with the BiV pacer. However, the new measurements are considered artificially elevated because these were made while I was on an inotrope drip (dobutamine). I think the BiV pacer can improve your CHF by one functional class. mcardenas@pacific.net.ph


Bill, June 14, 2004 - Hi, Can anyone tell me how to deal with the depression that seems to show up whenever it feels like it? Mostly, it's about not working anymore and all the extra pressure on my wife. Any help would be great, thanks. bj5250@yahoo.com


Lori K's June 14 reply to Jon's June 12, 2004 - Hi, Thanks Jon for the possible answer to my shaking problem. My dose of Zebeta (2.5mg) was the minimal dose. I am on 6.25mg BID of Coreg. I was surprised the side effects of Coreg seem to be greater than the effectiveness for me. With Zebeta, my BP and pulse came way down when my side effects were at their peak. Maybe 3 years ago I was in better cardiac condition compared to now.
     Also, in response to questions regarding hand lotions, my dermatologist told me Dove sensitive is the best soap to use to start. For moisturizers, any moisturizer with a drop of oil added in your hand, then warmed up by rubbing your hands together will add more oil to your skin without being oily. You can buy Vitamin E oil or jojoba oil at most drug stores cheaply. I hope this helps.
     I'll keep you posted on the Coreg. Now, increased chest pains are my greater concern! It's always something, as Gilda Radner used to say. Take care all. Lori K. thegoof86d@aol.com


Katherine H's June 14 reply to Art's June 12, 2004 - Hi Art, Several of us here have a biventricular pacing devices implanted, also known as resynchronization devices. The best information you will receive is already at this web site along with tons of other great info by Jon. I suggest you look up pacemakers here. If you have specific questions, I'd be glad to help. Just e-mail me at my address given. I've had mine for 21 months now. Katherine. kholian@msn.com


Tony's June 15 reply to Gene's June 14, 2004 - Hi Gene, You posted about having increased symptoms when drinking soda. I have a similar problem. There seems to be a relationship between how well my heart functions and carbohydrates, especially at night. I can't consume carbohydrates at night at all or I will have problems breathing and slight chest pains all night, along with my heart jumping and skipping. I've also noticed that if I eat a balanced meal, I can consume more carbohydrates during the day but if I overdo the carbs, I'll have increased heart symptoms during the day too.
     To me, anything that someone eats, drinks, that touches one's skin, breathes, or smells can cause increases in heart symptoms. The problem is that everyone has differences in sensitivities and body functions, so each individual person's health problems is a complex maze of relationships and events. I have no idea how doctors ever prescribe the correct meds. Regards, and best of health! t0nyt@yahoo.com


Jon, June 15, 2004 - Hello everyone, Here it is: "You can't legislate away a problem. It's like saying, 'We're going to pass a law that it's illegal to have a car accident.' It doesn't solve anything." Jim Hodges Jon.


Sandy H, June 15, 2004 - Hi, I had my TEE today, and it showed that my EF has improved from 20% to 45%, and is now 51%. Also, my mitral valve has stopped leaking but I am having a lot of trouble with dizzinness and low blood pressure. The cardiologist took me off Aldactone 25mg, Lasix 20mg and Lanoxin. Does anyone have any comment about that? Sandy. shallacy@mo-net.com


Ruthie A, June 15, 2004 - Hi all, Do any of you take niacin instead of a statin drug to lower your cholesterol? How do you minimize the flushing that niacin causes? It's getting to be a real problem but I don't want to stop taking the niacin. I cannot take any of the statins due to severe muscle pain. If it weren't for the flushing, niacin and I would be happy campers! Thanks for any help. Ruthie A. rlaba51@yahoo.com


Roz' June 15 reply to Jon's June 12, 2004 - Hi, The concert pianist next door has one of those melted wax baths to comfort, or slow down, possible arthritis. As these devices are often prescribed for use in arthritic joints, the costs may be covered by insurance. Bag balm is great stuff too, incidentally and I'm sure your cow appreciates your using it; mine does. Yours truly, Crazy Roz. rwarriston@aol.com


Donna H, June 15, 2004 - Hi, As usual, I am totally confused. I took my husband back to the doctor today after being released from the hospital 5 days ago. He was told both in the hospital and by his doctor that he was not eligible for a biventricular pacemaker because he did not have a wide QRS. When I requested a copy of the readings, I noticed that it said QRS 208 ms. When I got home, I looked at the info on who would benefit from the biventricular pacemaker and it said EF under 35, QRS of 130 ms or longer.
     Is the 130 relative to other numbers? Another thing I found puzzling was a notation that said, "alarm for pacer not capturing." That sounds to me like his current pacemaker isn't kicking in. I tried to question a cardiologist but was told that I could ask the questions at the July 2nd transplant evaluation. I don't want to get upset and change hospitals over some little thing but I get frustrated when I can't talk to a doctor and I feel my husband's life might be at stake.
     Does anyone else have difficulty getting in to see a cardiologist? This is a military hospital so that might be the difference. How accessible should we expect the doctors to be? Today we talked to a nurse practioner, 2 cardiology lab techs and the pharmacist, but never saw a cardiologist. herdrich@grm.net


Jon's June 15 reply to Donna H's June 15, 2004 - Hi Donna, A QRS of 208 is monstrous - it would definitely require correcting, as far as I know. I would be calling and getting some answers on this and on the pacemaker issue right away.
     How accessible should doctors be? I can only give my experience. Even before I gained recognition at my cardiologist's practice for the web site, I could always count on a next-day callback from my CHF doc, if I said I really needed it. Every time I go to his office for anything except routine blood testing, I always get a physical exam from him, which he considers critical to proper care.
     He also stresses - and has come through on this and so have his associates when he was not there - that if I think I have a real problem to come in without even a phone call and see a doctor immediately. His cardiology practice has over 30 cardiologists and they are busy but I have been worked in for non-emergency issues same week several times.
     If you can't get in to see your doctor, or if you can't get information from him when you need it, what good is he? Seriously. Jon.


Suzy C, June 15, 2004 - Hi, I'm just snooping around again after not posting for a couple of years. I'm so glad to see you are keeping up the good work, Jon. An update on Dick, my CHF husband. He was hospitalized in November of 2002 for severe heart failure. He had not felt well for a couple of weeks and was retaining water again. During his stay they took 6 gallons of water off, changed some meds around, and told him he must go on oxygen permanently. During the night he went into seizures and was pretty much given up. The night nurse knew exactly what to do and by the time I walked in at 6:00 AM, he was back with many machines and doctors.
     Yesterday he was outside pulling weeds. He leads a full and normal life, working with me, driving, singing in church choir, shopping and cooking. However, he still has many bad days where breathing is difficult and he simply cannot move. His oxygen goes everywhere with us, even to Europe last summer. We take life seriously and live it to its fullest.
     Stay well all of you, you're always in my prayers. Suzy Coulter. sskbc@optonline.net


Greta's June 15 reply to Bill's June 14, 2004 - Hey Bill, Depression: What an ugly word. It sure can rob you of any motivation, and it feeds itself. Being a woman, I probably don't experience as strongly as a man the feelings of worthlessness concerning inability to work. It is tied up in men's self-image as provider. To some extent, I feel like I'm not pulling my weight since I can no longer work either. My sweet husband uses all the right words to try to convince me otherwise and he really means them when he says them.
     It has been 18 months since my CHF diagnosis was made and I am working through, with success, dealing with the "inability-to-work-depression-and-hold-up-my-end" syndrome. There isn't any simple solution - it is different for everybody.
     First, this is a malady that we try to fight because it doesn't feel normal. Give yourself a break and allow yourself to be depressed. If you had a bad cold or a case of the flu you would be resigned to it until you get over it. Those things happen. The mind is also part of the body and is subject to illness.
     Second, discuss this with your doctor. There are many varying meds to help depression. Third, if you can find a CHF support group (ask your doc or check with the local hospital) they can help a lot. It is so much easier when you can share with others who are going through the same thing. If no support group is available, find a therapist you feel comfortable with to vent your feelings.
     Last but surely not the least, a strong prayer life can do wonders. Jesus knows us and understands us better than anyone ever can, so He fully comprehends what you are going through. Ask for His help, He gives it freely. Good luck and God bless. Greta. gjohnson@arkansas.net


James, June 15, 2004 - Hi, Does anyone have insomnia? I'm having a very hard time with it. Some nights it's no problem - I can get out in nothing flat, by midnight even. Other nights I swear, I wonder why I even bother. Three nights ago and 2 nights ago I managed 3 hours of sleep. I was beat last night and ready for bed, then it was over and I didn't even feel remotely tired until almost 5:00 AM.
     I am on 50mg Cozaar, 20mg furosemide, and 12.5mg Coreg twice daily. I also take some of the common supplements (hawthorne, CoQ10, cayenne, multivitamin, vitamins E and C. I've cut the supplements out altogether for a couple of weeks and still had issues. I use CPAP for mild obstructive sleep apnea and when I use it I sleep fairly fitfully (the sleep I get is typically good, that's not where the issue lies).
     Having a 2 year old and a 10 month old doesn't help matters any of course <g> but there's something more to this. I simply cannot get on a regular pattern. I'm about out of ideas here. CHF in general has wreaked enough havoc on life as it is but this sleep thing is problematic at the least. jnj@spamcop.net
 
Jon's note: I don't have a fix but it's common enough to be on the list of common symptoms in The Manual


Ron, June 15, 2004 - Hi, I was just diagnosed with cardiomyopathy. My EF was 14% and they have just started me on Coreg twice daily at 3.2mg. The cardiologist indicated that he thought my CHF was caused by a viral infection. Will my EF get better, and what can I expect in the coming months? Also, I do tire easily. Thanks. ronr@kw.com
 
Jon's note: A good place to start is The Manual


Theresa, June 15, 2004 - Hello, I'm 35 years old and developed PPCM when my daughter was born in September, 2003. My question is: Does anyone know if a "pins and needles" feeling and pain in the feet and legs is related to the PPCM and CHF? Thank you in advance. koala_t@hotmail.com
 
Jon's note: This one is common enough to be in The Manual also  ;-)


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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