The paperwork never ends The Archives
January 16-31, 2006 Archive Index CHFpatients.com

Jon 1-19     I'm back, sort of
 
Susie M 1-21     got that handicapped sticker & good news
 
Sandy N 1-21     update, thiamin and heart failure
 
Debra S 1-22     should I switch from Coreg to Toprol-XL?
 
Roger G's 1-22 reply to Sandy N's 1-21     sugar and carbs
 
Lindy M 1-22     seek CHF doc on Illinois side of St. Louis
 
Tony M 1-22     being tested for trial, prayer requests
 
Susie M 1-23     is there a better solution than amiodarone?
 
Karen S 1-23     chemo, CHF, and Social Security - questions
 
De S 1-23     seek CHF doc near Gainesville, Florida
 
Pat H 1-23     could beta-blockers make me depressed?
 
Jon 1-25     missing an occasional day
 
Margaret D's 1-25 reply to Karen S' 1-23     stay on therapy, get a CHF specialist
 
Jeff C 1-25     what could be happening with my grandmother?
 
Scott B's 1-25 reply to De S' 1-23     standard CHF treatment measures
 
Scott B's 1-25 reply to Debra S' 1-22     experience with Coreg
 
Susie M's 1-25 reply to Jon's 1-23     also to Lindy about CHF doc
 
Jon's 1-25 reply to Susie M's 1-25     docs
 
Pam M 1-25     mood changes after heart surgery?
 
Cheryl C 1-25     seek ACE inhibitor cough experiences
 
Debra S 1-25     switching from Toprol-XL to Coreg
 
Sandy N's 1-25 reply to Roger G's 1-22     book suggestions
 
Holly M's 1-25 reply to Tony M's 1-22     also to Debra and Karen
 
Paul D's 1-25 reply to Karen S' 1-23     cancer treatment causing heart failure
 
Jody H 1-26     seek CHF doc in Washington state
 
Roger G's 1-26 reply to Cheryl C's 1-25     similar experience with ACE inhibitor cough
 
Jerry B's 1-26 reply to Holly M's 1-25     ICDs versus pacemakers
 
Sandy N's 1-26 reply to Cheryl C's 1-25     ACE inhibitor cough experience
 
Robert M 1-29     seek CHF doc in New York City
 
Judy R 1-29     seek pacemaker/ICD experiences
 
Milly R 1-29     will I get better? and more
 
Lance F 1-29     questions - diabetes meds, PVCs, and more
 
Tom S 1-29     reported Coreg shortage
 
Harry A's 1-29 reply to Pam A's 1-25     after surgery and meds
 
Peter S' 1-29 reply to Jody H's 1-26     spironolactone experience
 
 


Jon, January 19, 2006 - Hi everybody, Well, I'm set up as much as possible for the time that has occurred. SBC totally screwed us up on our phone and DSL service, even though we gave them 3 weeks notice that we would require a DSL move, they made so many mistakes that we would not have actually had Internet access until the 27th. I now use a cable modem. The installers couldn't get that to work yesterday either but I got it working this morning. Doesn't anyone at these "tech" companies know how to do their jobs anymore?
     I am sorry but I will not be putting up the forms for another day or two while I attempt to get some more done at our new house. All is well except clothes - our washer and dryer hookups both have serious problems that may require serious money to fix. However, the rest of the house has not disappointed us and we are settling in nicely.
     I am sorry for the added delay but honestly, it's for my health - I'm very tired. I do look forward to posts and e-mail again in a day or two! :-) Jon.


Susie M, January 21, 2006 - Hi, I am responding to my last post to clear things up. Thank you for everyone that e-mailed me! What a help. I did get the handicapped sticker for him and it has made a big difference in conserving energy. His monopril and diuretic are now doubled and he can pick the dog up now! He has a better appetite and decreased shortness of breath. He is doing much better. I am so grateful to God for this site and thank you, Jon.


Sandy N, January 21, 2006 - Hi Jon, Welcome back. I was at my doctor's this past week and was told many of my blood work levels; some are high with sugar being one. The doctor told me to eliminate most carbs from my diet.
     I also ran across an article that suggests thiamin (vitamin B1) might be of help to some of us. See www.sciencedaily.com/releases/2006/01/060115001039.htm. bleuskiiisgrl@yahoo.com
 
Jon's note: The tricky thing about studying hospitalized CHFers is that when hospitalized we are usually in worse than usual shape and our levels of just about everything are abnormal!


Debra S, January 22, 2006 - Hello, I am having very uncomfortable reactions to Coreg. My doctor here wants me to put up with them. My doctor from Cleveland Clinic wants me to go on Toprol-XL. I don't know what to do. Since Toprol-XL is also a beta-blocker, will I still have depression and nervousness from it like I do from the Coreg? I just don't know where to go for help and advice. That is what happens when you have more than one doctor. The doctor in Cleveland is a CHF doctor and head of heart failure and transplant medicine at Cleveland Clinic. My doctor here is just a cardiologist. I hope someone can give me some advice. I'm glad everything is up and running again. r_steinberg@sbcglobal.net


Roger G's January 22 reply to Sandy N's January 21, 2006 - Hi Sandy, I read your post about reducing sugar. Can I suggest taking a look at the book "Sugar Busters"? There are many foods besides carbs that have a lot of sugar. One example is fruit. If you eat fruit with a meal you absorb more sugar than if you eat fruit as a snack by itself. There is a lot of good information in that book. I hope you are doing well. rogergthree@earthlink.net


Lindy M, January 22, 2006 - Hi, I just found your web site and have found it to be really helpful and informative. I was diagnosed with CHF about 2 years ago after, well, that's a long story but after reading your site I think I've been having episodes for years and didn't realize it. I think what had been diagnosed as asthma was actually CHF.
     My life has been pretty much the same as before, though. I take my meds, go to work, just started back into an exercise routine and am trying hard to maintain it. I am class 1. However, after reading your site, I realize that my cardiologist is really not taking very good care of me and I didn't even know it. I have had no blood tests, no re-evaluations, etc,..., just a check-up twice a year.
     So, I am on the Illinois side of St. Louis. My internist is at Barnes so it's no big deal to cross the river. If anyone can recommend a new cardiologist, preferably one with a specialty in CHF, I would greatly appreciate it. Thanks, and Jon, keep up the good work with your site. mmurray@intertek.net


Tony M, January 22, 2006 - Hi, I hope you all are as glad as I am to see this message board back up and running; Jon has us hopelessly hooked on this site! I am leaving with my wife tommorrow morning from Alabama, flying to Pittsburgh for testing to see if Dr. Patel can do stem cell injections into my heart. He has already seen my records and said he thought he could help me but I haven't had a heart cath since 2001 and he wants to update my records with Pittsburgh equipment. I am to have a heart cath a heart MRI, a stress test with thallium and radioactive drugs injected while undergoing the test.
     I am really positive he will include me in this FDA-sanctioned study. I am a class 3 heart patient right now and have had my ejection fraction go up and down a couple of times and like Jon, I feel terrible no matter what the numbers are so I still feel bad and weak. I hope to be a pioneer in this treatment and set the standard for all patients to get treated.
     I also want to thank Debra S, who is a regular on this site, for reading my e-mail and sending me the info to get into the Pittsburgh study. Without her I wouldn't be going or know how to get into this. Debra is a guardian angel to me and I want all of you to pray for her because she herself is very sick and has turned down a heart transplant because she is allergic to the sulfa drugs they use to make your body accept the new heart. She is also too sick (very low ejection fraction) to get into a study like the one I am checking into so pray that her ejection fraction will pick up and she can get into the Cleveland Heart Clinic study this summer. I know you can help her with your prayers so please pray for her.
     I will be posting my results when I meet Dr. Patel Thursday after heart tests on Tuesday and Wednesday. I was looking around on the Theravite web site and they have a page dedicated to Dr. Patel and they have a national public radio broadcast that was recorded last year on which he said the results were dramatic in these people after the injections - so dramatic they at first didn't believe the patients! He also said they wanted to do a study over here on class 2 to 3 patients and see if they could reverse heart failure in people who were not at class 4, which is who they had to choose in Bangkok and I knew then that's why they chose me.
     My doctor here in Alabama is the head of transplant and head of the University of Alabama at Birmingham Heart Center. He has one thing on his mind: A transplant. I don't want a transplant. I want a cure for my heart so if any of you get into a study don't listen to a mainstream doctor just because they are a doctor. Some of them don't want you to go anywhere different.
     On my last check-up in October I asked my Alabama doctor would I ever beat this and he said no, you're always going to be sick. I left believing I had to find a something different from what I was getting so far. With God's help through Debra I got my answer inside of a week after I made that decision so I do believe in prayer, when I used to believe in science only.
     Take care and pray for Debra also. Tony Myrick. ynotmyrick@yahoo.com


Susie M, January 23, 2006 - Hello, My husband with CHF was put on amiodarone (Cordarone) a year ago because a week after his pacemaker/ICD was put in, his ICD went off 7 times in one evening. He was in a-fib and has always been questioned if he went into a-fib from normal stress from the surgery on his weak heart. We don't think he had any episodes of a-fib before that.
     For precautionary measures, he was put on 800 mg, then 400, then 200, then 100mg of the amiodarone. The dosage had been decreased because for the past year his ICD interrogation showed no a-fib until last month, when at a visit it showed less than one percent so it was suggested he stay on the 100mg. If his interrogation showed no a-fib again at this visit, the doctor was taking him off of it. Opinions from anyone?
     I am considering taking him off myself or at least cutting dose in half. I really do not know how I should do it or if I even should. I would appreciate any opinions. Jon? smiracle@showme.net
 
Jon's note: Has dofetilide been considered instead?


Karen S, January 23, 2006 - Welcome back, Jon! My daughter and I have missed the site and we hope that you are taking care of yourself and resting after your big move! I just had my second echo since my diagnosis in August of 2005. My cardiologist was disappointed that I had not improved with meds, exercise and life style change. I have an EF of 20%, and I take Coreg, Altace, spironolactone, Lipitor, digoxin, and Celexa.
     He told my daughter and I about some treatments/meds coming "down the road" for heart patients, but not necessarily for CHFers. He also backed off the original cause of the heart failure, which was chemo and radiation. He said there might have been some other sigificant event that triggered the CHF, since I had the chemo in 2001. Then he started talking about being happy and quality of life. We left his office quite upset.
     This morning I called to get copies of my records, as I am applying for Social Security. I am pending for Medi-Cal so I have only county insurance. Any thoughts or advice from anyone would be wonderful! Thanks. Karen S. cowgirl94952@yahoo.com
 
Jon's note: Chemo is proven to cause chemo many years after it is given.


De S, January 23, 2006 - Hello, I have recently been diagnosed with cardimyopathy with an LVEF of 39 percent by cath and 45% by echo tests, respectively. I have seen two cardiac specialists which gave me such different opinions I am looking for a third. One told me I have a 70% chance of death in the next 5 years and the other said she saw no reason for it to progress and didn't make it seem like any real big deal. I am 47 years old and am wondering if seeing a CHF specialist would be a good idea, and if anyone could recommend someone near Gainesville, Florida. However, driving is not an issue. I am much more interested in seeing a great physician.
     I do not know which doctor to believe and also have many questions about supplements, diet, exercise, etc. I just have not been able to get many answers. I thank anyone in advance who may be able to offer some suggestions. demsellers@cox.net


Pat H, January 23, 2006 - Hello, Six years ago I began to take Coreg. It was a terrible summer with depression, incredible fatigue and low heart rate. The doctor lowered the dose and then titrated me more slowly. Eventually I was able to withstand my target dose of 50 mg daily after raising pacer settings to 60 beats per minute.
     Two years ago, we added sotolol to the mix to cope with persistent v-tach. Again, this was a very difficult transition. My current dose of sotolol is 320 mg a day. Two months ago the UW Madison heart failure people asked me to get back up the 50 mg Coreg a day. I had been able to tolerate 25 mg daily since biventricular pacemaker implant and the 320 mg of sotolol. I was still working full time after a 10 year old diagnosis. Iwas also trout fishing, grouse hunting and walking 5 nights a week since the pacer implant.
     Then it all started to crash. Within 2 weeks of the combined target doses of both beta-blockers, I have become deeply depressed, have horrible headaches and fatigue. I finally decided to back down on the Coreg but it has been a slow recovery. My question is could this all be related to a beta-blocker toxic reaction? My doctors think it may be viral problem. I am losing it. grousepoint@yahoo.com
 
Jon's note: You should hire some better doctors - depression and fatigue are well-documented and proven side effects of beta-blockers in some people - and they have you on two of them!


Jon, January 25, 2006 - Hi everyone, Sorry for no posts yesterday. I am working on the house in various aspects and yesterday I had to pick, load, unload, and install 3/4" full sheets of plywood - pretty much wore me completely out. After the shelving which is the current project, comes a built-in bookcase in the rec room wall, so there may be a day here or there when I just don't make it. Jon.


Margaret D's January 25 reply to Karen S' January 23, 2006 - Hi Karen, I certainly agree with Jon about the chemo causing the CM. Plus if you were diagnosed only last August, 2005, it is way too early to get upset about lack of improvement. That's not even 6 months yet! It can take a while for the improvement to show. My EF went from 15% by cath to 55% in a matter of 3 years, gradually.
     Are you maxed out on your Coreg yet? Don't let this guy upset you by his lack of knowledge! Perhaps you should start looking for a CHF specialist. Continue with the right drugs, exercise regularly even if you go slowly, eat a low sodium diet always, and good things will happen!
     SSD can take awhile so it is good that you are looking into that. I heartily recommend reading all Jon has on this site about SSD. There are some great hints that I used and I was approved on the first try in 6 weeks! (a miracle) mdavis10@tampabay.rr.com


Jeff C, January 25, 2006 - Hello, My 84-year old mother was hospitalized on December 28 after having trouble breathing. It came on suddenly. She had been feeling fine until then. She was hospitalized with pneumonia and was in ICU several days. During rehab, her lungs filled with fluid again, this was three weeks later. Her ejection fraction is in the 35% range and hasn't changed in recent years. Her doctor is calling this heart failure, but I'm wondering if there could be something else going on since her EF hasn't changed and up until her hospitalization, she was fine, climbing stairs daily, driving, shopping, etc. I can't understand why she is having this trouble with a heart that apparently hasn't changed in its pumping ability. jcarpen357@aol.com


Scott B's January 25 reply to De S' January 23, 2006 - Hi De, There is simply not enough information in your posting to make a good recommendation. For example, the first cardiologist was quoting the rule of thumb from old literature on mortality in CHF patients. With meds such as beta-blockers, those statistics are no longer accurate. People with this condition are living longer.
     Your second cardiologist is likely trying to compensate for the knee-jerk reaction of the first doctor. I assume there is a reason you went in to see the doctor in the first place (eg. fatigue, shortness of breath) - so you are feeling some effects. I don't think a cardiologist should be telling you that you have nothing to worry about, though. How can a cardiologist know if your condition is worsening unless they have previous tests to measure against?
     Have you been prescribed a regimen of medications? Have you been told to weigh yourself daily? Do you have sodium and fluid intake restrictions? These are all standard items I would expect from a cardiologist. They should be able to give you a treadmill stress test to help with the amount of exercise you can do. The right cardiologist should have you doing all of these things. Thanks, Scott B. Kitchenerguy@rogers.com


Scott B's January 25 reply to Debra S' January 22, 2006 - Hi Debra, How long have you been trying to tolerate the Coreg? It is my first choice, because I think it works well (from the people I have seen who seem to be living with this disease). It definitely puts a "ceiling" on my heart rate. It is my gut feeling that Coreg is a medication which prolongs life, perhaps no better than Toprol-XL, but I know the Coreg seems to work.
     I know the side effects get better although they will not necessarily go away completely. Also, I realize everyone is different. I experienced depression when I first started Coreg and depression is just not in my normal makeup. I passed through the stage and I am happy as a lark now (well, at least as happy as anyone who could suddenly die at the age of 35). Scott B. Kitchenerguy@rogers.com


Susie M's January 25 reply to Jon's January 23, 2006 - Hi Jon, I called the doctor about dofetilide and apparently at least here it is not available. She explained in my husband's case, the amiodarone is okay for him and if by June his interrogation shows no a-fib, he is going to be taken off it.
     To Lindy M, my husband was diagnosed and treated for CHF at the Washington University Physician's of Cardiology and they are wonderful. We drive 100 miles to go there. It as at Barnes in the Center for Advanced Medicine. When you call ask for a CHF specialist. The phone number is 1-888-210-8375. Our CHF there was Dr. Douglas Horstmanshoff and he was an absolute lifesaver in treating my husband's CHF. He has recently moved to Tulsa, Oklahoma, but I know you will get the best there. Dr. Mitchell Faddis is his electophysician there for his pacemaker/ICD and he is wonderful and is also very helpful with CHF, but he is a surgeon. You will get the best. If you have any other questions about it, you can post here or e-mail me. Susie. smiracle@showme.net


Jon's January 25 reply to Susie M's January 25, 2006 - Hi Susie, Dofetilide is brand name Tikosyn and is available anywhere in Canada or the USA at the very least. It is an FDA-approved drug for a-fib control and is waaaaaay safer than amiodarone, which can have literally fatal side effects. I would call local pharmacies to see if they can get dofetilide and if they say yes, then you'll know you cannot trust this particular doctor to check facts when making treatment decisions that affect your husband's life. My PCP used to get up when I mentioned a drug of which he was unsure, go look it up on his computer, then come back to the exam room and discuss what he had learned. My local pharmacist calls the drug manufacturer while I wait whenever I go there with a question. Willingness to go an extra step is absolutely required when it affects people's lives. Jon.


Pam M, January 25, 2006 - Hello, My husband had 6 blockages with 5 bypasses last May. Is moodiness normal after this? He goes from his old mild-mannered self to flying off the handle. He argues a lot now, which he never did before. One minute he has a temper and the next minute he's a kitten now. It scares me at times.
     I tell him to calm down but sometimes I think he is ready to punch someone, although he hasn't yet. These mood changes have only happened since his surgery. He is 57 years old and is in great health now, with no obvious stress or mental problems. Will this pass? I am just wondering if anyone else has had this problem. Thanks, Pam. PJM3651@aol.com


Cheryl C, January 25, 2006 - Hi everybody, I have a question that some of you should be able to answer. What exactly does an ACE inhibitor cough consist of? I'm not sure if I'm having an allergy problem or whether it's ACE inhibitor-related. Off and on during the day I get an itch in my throat and cough until it almost seems like choking. At this time I also seem to have a post nasal drip problem and if I can clear my nose it seems to help stop it. Cough drops help somewhat but I hate sucking on them every day. What do you think? Could it be ACE inhibitor-related? Cheryl C. cocojo86@yahoo.com


Debra S, January 25, 2006 - Hi, I just had a very interesting conversation with a heart failure nurse at the Cleveland Clinic. I am being changed to Toprol-XL from Coreg. I hope it won't bother me as much. The interesting part of the conversation is that there is a study going on comparing Coreg to Toprol-XL. They really don't know if Coreg is better. This study should prove whether it is or isn't.
     Jon, this web site is a godsend for me. Thank you. Debra. r_steinberg@sbcglobal.net
 
Jon's note: I'm surprised these two drugs are being compared - they each have certain characteristics that often make one a better choice than the other for specific CHFers. Head-to-head comparison is therefore sort of silly in some ways. So it goes.


Sandy N's January 25 reply to Roger G's January 22, 2006 - Hi Roger, Thank you for the book info. I'll be going for it this week at my local library. I also have a book title for anyone who needs a bit of encouragement: "Full Catastrophe Living" by Jon Kabat-Zinn. Good luck to all! bleuskiiisgrl@yahoo.com


Holly M's January 25 reply to Tony M's January 22, 2006 - Hi Tony, I am really excited for you in the stem cell research study. I will pray for you. I have been looking for all the info I can find. I am class 2 to class 3 with an EF of 20%, metabolic stress level 17, increased ventricular pressures, 36% of my left ventricle scarred, and low blood pressure. They have tried many ACE inhibitors and beta-blockers on me and at extremely low doses my blood pressure drops to 62/45 which makes it really difficult to do much of anything. They took me off all the meds (Coreg 3.25mg per day and captopril at 12.5mg twice a day) to see if my pressure would come up, which it has. It's back to about 85/55 and I feel a lot better.
     At least I am able to do things even if they are small, morning and afternoon, with a nap in between. I would love any info you may have on the stem cell procedure. I do live in the Cleveland area and go to the Cleveland Clinic heart failure/transplant team. So far they have not said anything about starting a study but now I will definitely ask!
     Karen S, Jon has some really great info on Social Security and things that can help. I wrote to my Senator and he has gotten involved in mine, which is now going to be reconsidered. I would never have known to do that without this site. Thanks Jon for all that you do for all of us out here struggling. Nice to have friends!
     Debra S, I had a hard time on Coreg also. The CCF docs seem to think that is the best drug for CHF but I was so tired because it dropped my pressure so much I couldn't do anything. I am only 49 years old and I am now looking at the quality of life, not quantity. Lying on my couch all day dizzy and nauseated isn't not how I want to be. The doses I was taking were so small compared to what they want me on, they weren't sure it was even doing anything. My EF has not changed since I had stent placement in May of 2005. I also have an ICD put in July of 2005 with no improvement there either. It's frustrating trying to find the right meds that work, if any! Right now I am taking 2.5 mg Lisinopril, which seems to be tolerated better than Coreg but the juries still out till they up the dose and see what happens. They would like me up to 20mg per day. holly92756@zoominternet.net
 
Jon's note: Toprol-XL is obviously a better choice for CHFers with low blood pressure. I can't believe they started you on Coreg instead with your blood pressure! Also, have they suggested Inspra for you (eplerenone)? Have you been tested to see if a CRT (biventricular) pacemaker would improve your heart function?


Paul D's January 25 reply to Karen S' January 23, 2006 - Hi Karen, It sounds like your doctor needs to get some more info on the side effects of cancer treatments. My heart symptoms following radiation and chemo showed up nearly 20 years after my treatment - this is quite common for radiation effects, and chemo such as adriamycin can often have effects 5 years after treatment. If you'd like to get more information about cancer survivor issues, I recommend the mailing lists you can find at http://acor.org. biggerbox@yahoo.com


Jody H, January 26, 2006 - Hi, I have just relocated to the state of Washington and I need help finding a heart failure specialist. I had a great doc in Denver (found from this site - thanks Jon!) and have had no luck out here. I am willing to drive to Oregon if that is my only option. If anyone can help, I would really appreciate it. I've checked the list on this site and Washington state has no doctors listed yet.
     Also, is there any benefit from splitting a 25 mg spironolactone tab and taking it every day versus taking a whole dose every other day? Thank you so much Jon, for this site and your continued faithfulness to presenting accurate information! jojo4given@comcast.net
 
Jon's note: Is there some reason you're not taking 25mg every day?


Roger G's January 26 reply to Cheryl C's January 25, 2006 - Hi Cheryl, Vasotec did exactly what you describe about your cough to me. I switched to Diovan and now Avapro, and have had no cough with either. rogergthree@earthlink.net


Jerry B's January 26 reply to Holly M's January 25, 2006 - Hi Holly, Were you expecting improvements from your ICD? Unless it has a pacer component, all it is doing is watching your heart for a pacable or shockable rythym. Hopfully, it never needs to be activated. cpapq4@rainierconnect.com


Sandy N's January 26 reply to Cheryl C's January 25, 2006 - Hi Cheryl, It is a strong possibility that your cough is related to your Ace inhibitor. I too had a horrible, annoying cough when I first started taking them. My doctor changed mine three times and it only got worse. I could not stop coughing. It was a constant tickle. Yes, I had congestion in my lungs as well. Whenever I'm in the hospital they put the "allergic to ACE inhibitors" note on my wrist band. Now that I'm off them, no more cough. Good luck! bleuskiiisgrl@yahoo.com


Robert M, January 29, 2006 - Hi, I was recently diagnosed with CHF and need a good CHF specialist in New York City. I am currently seeing a general cardiologist. Thanks, Robert. robmanali@yahoo.com


Judy R, January 29, 2006 - Hi All, I have just found this site. I was diagnosed with CHF in June, 2000. Since then, my EF has not been higher than 20%. It is now about 15%. I am taking Coreg, Altace, Lipitor, aspirin and CoQ10. I am scheduled for a pacemaker/ICD implant on January 31. Does anyone have this device and how are you doing? Thanks for any info. judyareed@aol.com


Milly R, January 29, 2006 - Hi anybody, I just discovered these posts and find that I have many of the same questions. I went to an ER with shortness of breath 8/28/2005 - no big deal I thought - but after about 2 hours of all the usual tests I started throwing up and I guess the staff got worried. Next thing I knew I was in ICU with a doctor sticking a ventilator tube down my throat. After 2 days I struggled and pulled the tube out myself and everybody had a sigh of relief. My EF had dropped as low as 7 to 10%. I have been diagoned with cardiomyopathy and heart failure.
     I made a miraculous recovery after 10 days in the hospital and a week in rehab in the nursing home. I have had a pacemaker for 17 years for a low heart rate but other than that, no major illness prior to this heart failure. I felt better when I left the hospital than I did when I was home. I became very depressed, frightened to do anything and couldn't believe how weak and nauseated I felt with all the new medicines I was taking. The meds include Coreg, amiodarone (Cordarone) Amiorone, and Coumadin (warfarin) along with my diabetic medicine glucophage and a 500mg daily sodium diet. After one month trying to adapt to that diet I rold the doctor I couldn't tolerate it any more and went back to my diabetic diet and watched my sodium intake. My concern is my low blood pressure. In cardiac rehab, which I started 3 times a week, usually my blood pressure is in the low nineties and some exercise drops it even lower. My walking around the room is very shaky and the staff are a little concerned. They have advised me to take my medicines after therapy. By the way, my EF is up to 15% and I am 86 years old.
     I thought after 5 months I should be stronger and feel like being more active than I am. Do people suddenly die from HF or is it a long road back and I need to be patient, taking one day at a time. I do Internet visiting for Mended Hearts people, a national organization that can give help to mostly surgery heart people. My husband had quadruple bypass so I have been involved with the Mended Hearts for many years; I was president of the local chapter but cadiomyopathy is a whole different ball game than invasive heart surgery. At least with surgery, you know you should get better.
     Just the word failure scares me. Now I know why they say women have different symptoms than men. I was blaming my shortness of breath on the unusually hot past summer and taking care of my husband (in a wheelchair). I am driving again, which is a good thing for my depression (possibly not so good for the other drivers). Thanks for any encouragement and will cardiac rehab help in time?
     I forgot I am taking an additional medicine Diovan that I was taking before my heart failure. I think I am overdrugged because I fell the other day by getting up too fast. I know better! I hope to hear from some of you. Milly with a Y. seveer919@yahoo.com


Lance F, January 29, 2006 - Hi everyone, What a fantastic site! My name is Lance and I am a 34 year old pastoral counselor in the Nashville area. Thanks to uncontrolled hypertension (or so they think) I experienced my first symptoms of CHF in 2003. Although they said I had left-sided failure, I had all the symptoms of right-sided failure, including pedal edema, etc. Anyway, they told me that the left-sided failure caused the right-sided. Since then I have developed type 2 diabetes.
     I have a ton of questions that I can't seem to get answered and thought this would be a great place! I'll try not to be a pest. <g> Let me start with my current drug list: Enalapril at 20mg, Coreg at 100mg, Lasix at 80mg, spironolactone at 25mg, Avandia at 4mg, Lipitor at 20mg, Nexium at 40mg, Advair at 250/50mcg, and potassium at 20mEq, and aspirin at 81mg. Well, on with the questions.
     I have been hospitalized twice in the last year for hypovolemia (not enough fluid in my body). However, the first time was when my regular doctor added zaroxylyn and told me to take it as needed - bad move. Yet my doctor insists I do not need to increase my potassium (his concern is hyperkalemia (too-high potassium blood level). Is this a common problem with these dosages?
     My high blood pressure is still not well controlled. Back in 2003 when I was first diagnosed, I was given Toprol-XL and titrated up to 50mg. My heart rate stayed at 50 but due to the other symptoms and the "benefits" of Coreg, I switched over and went slowly up to 50mg twice a day. Since I am at target dose with my beta-blocker, are there no other alternatives to help control my blood pressure when it soars? Maybe take it 25mg 4 times a day? I'm interested in hearing from anyone who may have some experience taking this med.
     Because of the heart failure, my former cardiologist (I've had several now) wouldn't let me take metformin for the type 2 diabetes and said the only good drug for me would be Avandia. Now every time that stupid commercial comes on I hear how it causes heart failure. Gee, thanks! <g> Any alternatives to Avandia that have been good?
     Of course there are other issues, but I am not going to rant any more. They are unsure of my etiology (cause) and I think they just blanket labeled high blood pressure as the cause of my CHF. My other medical history isn't too extensive. A few that might be the culprit are obstructive sleep apnea and Antiphospholipid Antibody Syndrome (do not take Coumadin) and as a child I had Kawasaki's but no myopathy.
     Finally, I am pretty new to the Nashville area. If anyone is from the area, please feel free to shout out some referrals. I have been disappointed with my previous doctors who seem too busy to answer questions and believe my symptoms are real. For example, I throw PVCs constantly, non-stop. This never happened to me before I started on an ace and beta blocker three years ago. Anyway, one cardiologist told me it was all in my head because the beta blocker stops PVCs and the second one (who had to admit it wasn't in my head because he was reading the EKG) said that I had them all my life and it's just that I am more aware of them now, which isn't true. He then when on to tell me that everyone throws at least 150 PVCs a day. That may be so, but every other beat?
     Well, I'm rambling on again. I guess I am just so excited to see such a knowledgable forum! Jon, great site and I look forward to many more visits! Lance. lgflood@yahoo.com


Tom S, January 29, 2006 - Hello, Friday I received a phone call from a reporter at the Philadelphia Inquirer asking me about the "Coreg shortage." At first I wondered how she knew I was even taking Coreg and then she explained she had seen my name on Jon's CHF Patients list. Anyway, it came as a hug suprise to me that there is a shortage of the drug, but upon a simple internet search I found several references to the alleged shortage which is blamed on a quality control issue with Smith Kline Glaxo's Cidra, Puerto Rica Coreg manufacturing plant. Apparently the FDA is unhappy with several drugs being manufacturered there, including Coreg.
     The Newsday story I read goes on to say that the shortages are "spotty." I have yet to experience a problem because I received all my drugs through the Veterans Administration and it will be another six months before I even need a Coreg refill. Meanwhile I gave the reporter Jon's address so that the expert in this field could deal with it. Did she ever get a hold of you, Jon? bigheart@muchomail.com
 
Jon's note: No one has reached me yet. Pharmacists having trouble getting Coreg for their customers can call the manufacturer at 1-800-877-1158 for information. There should still be plenty to go around as long as your pharmacist is willing to look around. I must say that for anyone who switches to Toprol-XL for any reason, the smart move is to go from target Coreg dose straight to target Toprol-XL dose to maintain beta-blockade in your body. There is no point to dropping equivalent dose when switching from one beta-blocker to another.


Harry A's January 29 reply Pam M's January 25, 2006 - Hi, I'm a class III with stage C heart failure. I take an 81mg baby aspirin, Coreg, furosemide (diuretic), K-tab (potassium), lisinopril (ACE inhibitor), warfarin (Coumadin), Zocor, flaxseed oil, digitek (digoxin), and Paxil (anti-depressant). Amazing isn't it! Plus I have an ICD/pacemaker. By the way, I just got my first 6 month report since having the ICD implanted, and it shows that the ICD only paced my heart some 8% of the time while I was sleeping (raised a lowered heart rate up).
     I only had a single bypass, but have major heart muscle damage. What your husband is experiencing is the sense of mortality that comes from having such an experience. If he is on medication, it can also affect his moods. I noticed it affected mine and still occasionally occurs. My wife understands that this is normal, she visits my cardiologist, electrophysiologist, etc,..., and is fully aware of the drug side effects. Please talk this over with your husband's doctors, they should be happy to discuss what you are seeing with you and he. Regards to all. eabinc@mindspring.com
 
Jon's note: Also, a small percentage of heart surgery patients experience serious personality changes that sometimes persist over time. Be sure to talk to his doctor.


Peter S' January 29 reply Jody H's January 26, 2006 - Hi Jody, I was on 25mg spironolactone daily until a few months ago when my cardiologist asked me to cut back to 12.5mg. My potassium levels were creeping up and spironolcatone may have been a contributer. I asked if I could take then take one 25mg every other day, but he insisted I split the tab and take 12.5mg per day. I assume the benefit is an even flow into the bloodstream. I am now completely off spironolactone - at least for the time being - for reasons that may have nothing to do with your particular situation. PeterSperl@cs.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, Jon C.

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