The paperwork never ends The Archives
February 1-15, 2006 Archive Index CHFpatients.com

Tony M 2-1     doctors, stem cell therapy, update
 
Jack D's 2-1 reply to Peter S' 1-29     spironolactone and potassium experience
 
Sandy N's 2-1 reply to Judy R's 1-29     pacemaker/ICD experience
 
Tom S 2-1     Coreg shortage information
 
Karen K 2-1     Coreg shortage information
 
Jon 2-1     Coreg and Toprol-XL comparison, things to consider
 
Jon 2-1     late posts, donations
 
Margaret D's 2-1 reply to Milly's 1-29     blood pressure, diet and more
 
Margaret D's 2-1 reply to Lance's 1-29     blood pressure, PVCs, and more
 
Bill O 2-1     doing well on drug therapy
 
Scott B's 2-1 reply to Lance F's 1-29     some questions
 
Matt R 2-1     what questions should I ask CHF doc?
 
Shaun L 2-1     what are the effects of work-related stress?
 
Carol K 2-1     how is the doctor sure this is what I have?
 
Linda B 2-1     seek clear SSD/work explanation
 
Roger H 2-1     dizzy spells, prayer request
 
Kris P 2-1     my dad is doing poorly
 
De S 2-2     thank you all
 
Cheryl C 2-2     Coreg shortage
 
Roger H 2-2     looks like episodes were low blood pressure
 
Kris P 2-2     seek BNP and end-stage information
 
Jon's 2-2 reply to Kris P's 2-2     BNP and end-stage information
 
Sherri 2-2     arginine trial question
 
Jane A's 2-2 reply to Milly R's 1-29     meds, doctors, and more
 
Pat W 2-2     post-transplant update
 
Paul W 2-2     seek info on ischemic cardiomyopathy
 
Jon's 2-2 reply to Paul W's 2-2     ischemic cardiomyopathy
 
Donna V 2-3     Coreg shortage
 
Lance F 2-3     to Margaret D and Scott B
 
Jon's 2-3 reply to Lance F's 2-3     ACE inhibitor cough versus CHF cough
 
Barbara P J 2-3     update
 
Scott B's 2-3 reply to Cheryl C's 2-2     Canada has generic Coreg (carvedilol)
 
Paul W's 2-3 reply to Jon's 2-2     cause of CHF, some history
 
Marty M 2-3     seek amiodarone with ICD experiences
 
Wayne R 2-3     stem cell therapy
 
Jon's 2-3 reply to Wayne R's 2-3     stem cell therapies
 
John K 2-3     good news update
 
David W's 2-3 reply to Linda B's 2-1     Social Security Disability and working experience
 
Joy K's 2-5 reply to Linda B's 2-1     Social Security Disability and working
 
Evelyn G 2-5     has your perspective & reaction to death changed post-CHF?
 
Sandy N's 2-6 reply to Evelyn G's 2-5     thoughts on death
 
Marty C's 2-6 reply to Evelyn G's 2-5     thoughts on death
 
Faye B 2-6     questions on CoQ10 and estrogen
 
Sandy N's 2-6 reply to John K's 2-3     take care stopping meds
 
John K's 2-6 reply to Jon's 2-3     meds changes
 
Nancy S 2-7     heart rate, blood pressure questions
 
Lori K 2-7     myopathy, muscle pain questions
 
Joy F 2-7     seek viral & bacterial info resources
 
Bill H's 2-7 reply to Evelyn G's 2-5     thoughts on death
 
Tom S' 2-7 reply to Evelyn G's 2-5     thoughts on death
 
Jeannine L's 2-7 reply to Jon's 2-3     TheraVitae's therapy
 
Jon's 2-7 reply to Jeannine L's 2-7     stem cell therapies
 
Cheryl C 2-7     to Sandy N and Martin C
 
Maryann H 2-9     seek ideas on loss of appetite
 
Esteban B 2-9     my Theravitae procedure experience
 
Paul W 2-9     seek North Carolina disability & SSI experiences
 
Scott B 2-9     stem cell therapies, message boards and more
 
Jon's 2-9 reply to Scott B's 2-9     stem cell therapies, message boards
 
Jan H 2-9     my husband died, but never give up hope
 
Chuck F 2-9     seek info on heart rate monitors for exercise
 
Dee C's 2-9 reply to Jon's 2-7     my VesCell therapy experience
 
Candace M 2-9     how can I help my dad? doc seems indifferent
 
Kris P 2-9     losing his voice - any ideas?
 
Bobby M 2-11     newly diagnosed, how long do we live?
 
Pat Y 2-11     the site is worth supporting to me
 
Lowell P 2-11     message board format
 
Tom S' 2-11 reply to Paul W's 2-9     disability in North Carolina experience
 
Marie G 2-11     seek any advice
 
Barb N's 2-11 reply to Kris P's 2-9     husky or almost-gone voice
 
Peter S 2-11     seek treadmill stress test protocol numbers
 
Debbie B's 2-11 reply to Candace M's 2-9     your dad needs a new doctor
 
Jacky B 2-11     what is an equivalent Toprol-XL dose?
 
MaryAnn H 2-11     can Coreg raise dig level?
 
Jack H's 2-11 reply to Chuck F's 2-9     heart rate monitors
 
Marty M 2-11     seem experiences with BiV pacer/ICD devices
 
K C 2-12     is living at parents' home my best bet?
 
Chuck F's 2-12 reply to Jack H's 2-11     need wrist-watch type heart rate monitor, I think
 
Jerry B's 2-12 reply to Peter S' 2-11     treadmill test protocols
 
Sandra S' 2-12 reply Paul W's 2-9     I am having disability problems too
 
David W's 2-12 reply to Bobby M's 2-11     I am living longer & doing better than expected
 
Darlene 2-12     Coreg questions
 
Jon's 2-12 reply to Darlene's 2-12     Coreg
 
Tom S' 2-14 reply to Jon's 2-12     Coreg and splitting pills
 
Peter S' 2-14 reply to Jerry B's 2-12     treadmill exercise test
 
Candace M 2-14     has anyone with CHF gotten better? How?
 
Paul W's 2-14 reply to Tom S' 2-11     more on my situation
 
Scott B's 2-14 reply to Darlene's 2-12     generic Coreg, weighing, transplants
 
Chuck F's 2-14 reply to Jon's 2-12     implanted device settings, exercise, heart rate monitors
 
Scott B's 2-14 reply to K C's 2-12     living with CHF
 
Charles W 2-14     CPAP mask questions
 
Judy R 2-14     Coreg and digoxin
 
Giorg's 2-15 reply to Chuck F's 2-12     heart rate monitors
 
Bill H's 2-15 reply to Bobby M's 2-11     worrying about death and dying
 


Tony M, February 1, 2006 - Hello Jon and friends, I will not be getting stem cells. I had a battery of tests for two days up at Pittsburgh and they couldn't get a exact figure on my ejection fraction. A heart cath showed 30 to 35%, a number low enough to get stem cells. An adenosine spect test showed 45%, and the echo showed 40 to 45%. I also did a 6-minute walk in a long hallway with an oxygen sensor on my finger and it showed very low oxygen levels numbers like 88, which is very, very low.
     I met with Dr. Patel after the heart cath, which was the last test on Wednesday morning. He told me that I felt crummy - too crummy for what my heart showed and said he thought I had a lung problem. During the echo (by the way, up in Alabama my doctor refused to do an echo on me and we had a war of words because he thought I wanted one for a ejection fraction number and I just wanted one because it had been a standard procedure of 6-month testing since this started in 2001. Anyway, when they tried to rub the wand on the sides of my chest they couldn't see my heart and I had to have a contrast shot so my blood would brighten up and allow it to show my heart through my lungs. The echo tech asked me had I had this problem before and I told her that I hadn't had an echo in a year and a half. She looked puzzled, knowing I was a heart patient and saw a cardiologist every six months at home.
     As it turned out, I had to have 3 contrast shots before they could see my heart through my lungs. I then knew something was wrong, very wrong. A doctor had to come in and give me the contrast shot and after the third he said if you were very overweight or was a large-chested football player this would make sense but 4 shots is the limit. Three shots finally gave them a picture.
     Then I had a heart cath which showed no blockages. Dr.Patel asked me if my cardiologist had told me about my mitral valve leaking and I told him no, so he asked some other questions to see what type of knowledge my doctors up here had covered and then he sat down in chair close to me and said that's why we are different up here. We explain everything to you and we will not leave out anything and we will find out what is wrong with you.
     He then said, you have a lung problem and my guess is that you had a viral attack on your heart and your lungs back in 2001 and your doctors missed your lung problem and now your lungs will not expel your carbon dioxide and your heart is laboring to pump more and more blood to help out the lack of clean blood. He then ordered some lung tests called high resolution, where I inhaled xenon gas and they took pictures. On another test I had radioactive dye injected into my veins and they took more pictures. They found one of my lungs has a tumor and I have some sort of lung disease that needs further testing from a pulmonary doctor to determine exactly what it is.
     Dr. Patel then said he can't give me stem cells because they will make the lung problems worse or exacerbate them. I then told Dr. Patel that when I first got sick with the heart failure and had shortness of breath in 2001 I also kept telling the doctors I couldn't smell anything at all, even gasoline or dead fish - rank, very bad odors that would gag anyone else. He and his team said, we would have known from you saying that you had a lung problem, when you said that you couldn't smell. That is one of the signs of a lung problem when overnight you lose your sense of smell like that. I explained that my doctors blew it off and only worried about my heart and didn't worry about me not being able to smell. Now I have a tumor that's been growing for awhile and the lung disease that's been cooking for awhile, whatever it is.
     That is more or less why I have a shortness of breath instead of the heart causing it and I have it pretty bad. He told me if I were his patient I would be on oxygen right now my oxygen levels are so low. I would like to say to everyone go find a good doctor like Dr. Patel but I don't know how many like him there are. I was going to the University of Alabama at Birmingham, which is supposed to be the best there is around here and they are the only hospital in Alabama that does heart and lung transplants. I even had the top doctor - the head professor of the heart school - as my doctor and thought I was in good hands but he's running people like a cattle farm through the school up there and if you stop him and ask him a question he gets real mad because he's the god of the school up there.
     At Pittsburgh they have great doctors at every level and no one is "the man" like at UAB where I was going. Dr. Patel knows a pulmonary doctor at UAB and is supposed to get me an appointment to see him next week and let him do a biopsy and further tests to find out what kind of lung disease I have. As far as my cardiologist goes, up there at UAB, I have done the Donald Trump on him - he's fired! Comparing Dr. Patel to the doctors I have seen in the past is a joke he and his staff and the entire Pittsburgh hospital were the best I have seen.
     I thought this southern hospitality stuff was what we we were about, but I was wrong. Everybody from people who pushed me in wheel chairs to the heart cath doctors and staff were 10 times more gracious and nicer and much more helpful than here in Alabama. I totally recommend that anyone go to Pittsburgh for whatever reason they have because they are the best I have ever seen. I have had 6 operations in the past 5 years and none of the doctors or nurses compare to those guys and gals up there. They really treat you like the patient and make you feel like they are going to make you well. Take care, Tony. ynotmyrick@yahoo.com


Jack D's February 1 reply to Peter S' January 29, 2006 - Hi, My doctor didn't put me on spironolactone. I was in the hospital and the doctor there decided I needed it. My doctor looked at the order and said okay. I already take torsemide, furosemide and Edecrin (all diuretics) and have never had a potassium problem. One week after starting the spironolactone I was sick. My potassium levels had skyrocketed and I was forced to eat this stuff that looked and tasted like dirt for the next week to abosrb all the excess potassium from my system, really scary stuff. maddjak@hotmail.com


Sandy N's February 1 reply to Judy R's January 29, 2006 - Hi Judy, Yes, I had the ICD/pacemaker implanted just over a year now and I have felt a big change (for the better) in my energy. I have not been zapped yet; if and when it happens, I will smile because it's doing its job. Good luck to you! bleuskiiisgrl@yahoo.com


Tom S, February 1, 2006 - Hi, According to the Philadelphia Inquirer, calling around to different pharmacies can probably get you Coreg in spite of the shortage, which is due to quality control problems at a Puerto Rican manufacturing plant. Early this month, the shortage should ease up. The writer of the article is Marie McCullough at 215-854-2720 or mmccullough@phillynews.com. Tom. bigheart@muchomail.com


Karen K, February 1, 2006 - Hello everyone, I ran into a problem with the Coreg shortage two weeks ago. I was planning to go out of town for several days and needed to refill my Coreg prescription. When I went to pick up the refill, the druggist told me that they were waiting for the doctor to call back as they couldn't fill it. When my doctor did call back she told the pharmacist to give me Toprol-XL but that I should watch my pulse to be sure it didn't go below 50. I wasn't happy with the answer so I called the nurse at the University of Iowa heart failure clinic where I am seen every six months. When she got back with me she had me stop by the clinic (it was on my way to Des Moines) and picked up enough Coreg to get me through my trip plus several days. When my original prescription was finally refilled, the pharmacy told me I should be sure to give them a good week the next time I need to fill it as it is in short supply. Karen. karenk@machlink.com


Jon, February 1, 2006 - Hi everyone, Perhaps now is a good time to post some differences between Toprol-XL and Coreg. I personally switched from Coreg to Toprol-XL at my own request long before this Coreg shortage and am very happy with Toprol-XL. Here is some information on these two beta-blockers - the only ones currently FDA-approved to treat heart failure. Please read these carefully - there's a lot of information here and some of it may help you. These are not in any particular order:

I hope it helps. What it boils down to is that Coreg is a very complex drug and all its actions are not understood. Toprol-XL is less complex and has fewer actions. That may be good in some people, and not so good for others. Please also see chfpatients.com/beta_overview.htm for more beta-blocker information in general. Not all beta-blockers are created equal, that's for certain. Bucindolol should not be taken by CHFers. Jon.


Jon, February 1, 2006 - Hi again, I am sorry for late posts here but the exertion involved in relocating sometimes catches up with me and I am totally wiped out. Eighteen people donated in January of this year - thank you! Jon.


Margaret D's February 1 reply to Milly's January 29, 2006 - Hi Milly, It's great that you are doing cardiac rehab already! Exercise is important. I might suggest that you take your Diovan about 4 hours after your Coreg, and your blood pressure might not drop as much. Do you have your own blood pressure machine? It is a good idea to have one and then you can keep a record of your blood pressure and your doctor might believe you then if you complain of lightheadedness.
     You said that you are watching your sodium intake, which is great. Just be careful to watch it closely enough. Five hundred mg per day is stringent and very difficult to do, especially if you aren't used to a low sodium diet. Get in the habit of reading all labels and you will gradually familiarize yourself on what to avoid.
     Five months isn't very long and you do need to be a little more patient. Sometimes our drugs need some tweaking so we feel the best that we can. It may be that you need different doses on some things. Keep in close touch with your cardiologist and read The Manual on this site. mdavis10@tampabay.rr.com


Margaret D's February 1 reply to Lance's January 29, 2006 - Hi Lance, Well, I think you hit the nail on the head when you said you think you might need a new doctor. I wholeheartedly agree! Zaroxylyn can be extremely effective in getting off extra fluid but it can destroy your potassium. You do need to watch your potassium blood level while on Aldactone (spironolactone). Just make sure you have regular lab work done, especially if any doses are changed.
     There are a number of drugs that can be used to control your high blood pressure. They may need to try several in combination. I don't think going up higher on the Coreg would be the answer. Also, the etiology (cause) of your CHF may not be that important really but since your blood pressure is still not under control, that would be the most likely reason. The heart has to work harder to pump against a higher pressure and so it enlarges. Years of this add stress on the heart muscle, as does sleep apnea. Treating that effectively will also make a difference.
     If you are throwing PVCs frequently, you probably need to see an electrophysiologist. Have you ever had a 24-hour Holter done or an event monitor? Fifteen a day is nothing but yours need to be looked into. Keep us posted! mdavis10@tampabay.rr.com


Bill O, February 1, 2006 - Hello, I was told by 2 cardiologists that I desperately need CABG and mitral valve repair or die. I found that interventional cardiologists have little interest in medical (drug) treatment of coronary disease. Operations must pay so much they are not going to do anything to cut their income, I guess. Anyone with heart disease should read a book called "Heart Frauds" by one Dr. McGee. I want to tell you that I feel fine now. I take Coreg at 6.25mg, Cozaar at 25mg, furosemide, K-dur, Vytorin and insulin. I refused the operations and it took awhile but I avoided the troubles many CABG patients suffer. I did have a CABG in 1984. tbill@efn.org


Scott B's February 1 reply to Lance F's January 29, 2006 - Hi Lance, Your post is tough and I can understand why the cardiologists are challenged as well. Aside from the beta-blockers, the duiretic should bring your blood pressure down substantially. What is the range of blood pressures you observe? What is your current weight (I assume you are larger since your Coreg dose is in the high target)? What kind of exercise do you do? Do you have fluid intake restrictions? Are you good with your sodium restrictions? What is your target sodium level each day? Do you weight yourself daily (does your weight fluctuate much)? Do you take your duiretic daily, or according to weight?
     Overall, how are you feeling? What tests have you had so far? Is your cardiologist a CHF specialist? I am 35 years old and my exercise makes a tremendous difference to my quality of life (aside from today, since my back hurts for some reason). Scott B. kitchenerguy@hotmail.com


Matt R, February 1, 2006 - Hi all, what a great site and great group of people. I'm 24 years old at 6' 1" and 195 lbs and have had recent bouts of shortness of breath. I have a history of PVCs, found to be benign and probably due to smoking and stress. Anyway, my cardiologist performed a resting echo and numerous blood tests. Results indicated mild cardiomyopathy with EF being 48 to 52%. My left ventricle size was also indicated to be at the upper limits of normal. The only bad thing found in my blood tests was LDL cholestrol at 144. He put me on Coreg at 3.125mg BID, and told me to follow up in a week for an echo stress test.
     On the stress echo (treadmill) test they said that my physical ability was high (lasted 16 minutes before they cut me off). However, he said the contractility of my heart wasn't all that it could be. He then told me to continue Coreg and raise my dose in two more weeks. That's all he said as he walked out of the room. Upon my request, my PCP scheduled me for an appointment with the chief cardiologist at Froedert Hospital because they are very well known for their level of knowledge and care. I have a couple of questions before I go on Feb 8th.
     Since taking the Coreg, I have not felt better (one month) and I have several PVCs when I lie down or exert myself. Is this normal (I very rarely felt PVCs before this med)? Are there any important questions that I should ask regarding exercise, diet, etc,..,? I have learned a lot from reading this great site but remain scared, because I am so young. I just graduated college and my life is falling into place and now this happens.
     My PCP seems to think everything will resolve, thinking it was either viral induced within the past few months or alcohol induced. I did attend college in Wisconsin and partied pretty heavily on the weekends. If anyone has any advice, please feel free to reply by e-mail as well. Thank you so much. Great site Jon and I will be making a donation shortly! mrichmond1750@charter.net


Shaun L, February 1, 2006 - Hi, I was diagnosed with CHF. I am 41 years old and am athletic but am a workaholic. I am very scared. I am interested in knowing the effects of work and or stress on this condition. shaun@coastesa.com


Carol K, February 1, 2006 - Hi all, On September 27th I went to a doctor for a checkup. I was tired and had some swelling in my feet and legs. I had not had felt good for 2 months, being tired all the time. I couldn't afford to miss work so kept from going to the doctor. When I did go, he called an ambulance and sent me to a hospital. My oyxgen was 68%. I was in the hospital 6 days. He told me he didn't think I would make it through the first night.
     I am on nebulizer treatments, albuterol 4 times a day, budesonide 2 times a day. When I went to the hospital I had pneumonia also. I was a smoker for 42 years and quit the day I went to hospital cold turkey. What I want to know is that the doctor has me down for CHF, COPD, to limit salt use and to do what activity I can.
     I am on oxygen 24/7 at 2 ml. How does he know I have CHF or COPD? I don't cough, just tire out faster than I used to. I am 68 years old. Is there a chance I won't have to be on oxygen 24/7 all my life or all the time? I live alone and am really afraid. How does he know I have these conditions? How do I know for sure these are what I have? ckuehn5056@aol.com


Linda B, February 1, 2006 - Hi everyone, Can anyone explain in an easy-to-understand way what the rules are for working while you are on SSA Disability? I can't manage full-time work but I'd like to keep my hand in the "real world." I read over the explanations on the SSA site, but I don't get it. Thanks! lmbanicki@yahoo.com


Roger H, February 1, 2006 - Hi everyone, Here I've been sailing along pretty well since my last bypass in July of 2001 except for the 12 inches from the colon surgery in August of last year. Anyway, in the last two weeks I got totally hot in about a minute and sweat just poured and a few minutes later just about passed out. The first time I was at church and couldn't tell if it was a low blood sugar, but this Sunday I was at Walmart when it started - just the hot and sweat, then it was okay. I drove home and about 5 minutes later the dizziness returned and I just about passed out!
     My sugars were fine at 86, but my blood pressure was at 75/50. I went to my regular doctor yesterday and he said I better get a cath done. My wife called a cardiologist today. I don't know what tests or anything. My wife said they may throw me in the hospital, which I doubt. I request your prayers for whatever happens. We do know God is in control! With all I've been through, there is plenty of witnessing I can do for the glory of the Lord. Praises go to Jon on keeping this wonderful site going. Roger. rkharmony@highstream.net


Kris P, February 1, 2006 - Hi, My name is Kris and I have a 64 year old dad who suffers from class 4 CHF. Dad also is insulin dependant for the last 23 years. Dad seems to be changing this last month - he is very withdrawn and has dry heaves daily. He has no appetite for food. Dad has lost 13 pounds in two weeks and I'm very worried. He has been riding borderline kidney failure this past year as well. He has a doc appointment on Saturday. I wish my parents lived closer to me. They are 4-1/2 hours north of our home. Dad also takes three procrit shots per week due to a low hemoglobin. Thanks for listening and feel free to let me know what you all might think of his prognosis. Thank you, Kris. kpstyling@comcast.net


De S, February 2, 2006 - Hi, I want to thank all of you who responded to my questions and also e-mailed me privately. This message board has been so helpful. I am most certainly in the learning process, but listening and hearing from everyone on this site is the most inspiring, positive place to be. This has been far more helpful than most doctors.
     Fortunately, I have through your help found a cardiologist with whom I am much more comfortable and feel like a person, not just a disease or a number. I am also seeing a supplemental doctor (MD) who is offering other alternatives along with the meds, which have been working quite well. I feel blessed to have found Jon and all of you. Thank you. My prayers are with each one of you. demsellers@cox.net


Cheryl C, February 2, 2006 - Hi everybody, Yesterday I got a letter from Medco by mail, my prescription provider, which stated that they are completely out of Coreg and don't have any idea when more will be available. They also said that the shortage was nationwide but some pharmacies may still have have some available. If anyone is in need of the Coreg quickly, you better start looking quickly before everyone runs out.
     I just got my refill at the beginning of January for 3 months. I had the doctor write it for 25 mg pills twice a day, but I only take 12.5 mg twice a day since my echo turned out so well, so I should be set for 6 months. Apparently the Philadelphia reporter was correct. I know that Medco is very big since they provide prescriptions for all of AT&A. Good luck to everyone and let's hope for a fast solution to this problem. Cheryl C. cocojo86@yahoo.com


Roger H, February 2, 2006 - Hi, I went to the cardiologist today and he was pleased that he thinks all is working as my blood pressure is low, so he just cut my Cozaar to 50 mg per day - half of what I always took before. I am on a heavy metal detox and with my strict low sodium and exercise, he said all looks good. Just to be on the safe side, Monday I am getting an echo in the carotid artery and in two weeks a stress test. Hopefully this is what it was. rkharmony@highstream.net


Kris P, February 2, 2006 - Hi, Does anyone know the normal values of a BNP test? My dad's reading is usually around 1900 but recently it jumped to 4000. Also, can someone explain to me what end-stage heart failure consists of? My father is not doing well and I need some advice. Thank you. kpstyling@comcast.net


Jon's February 2 reply to Kris P's February 2, 2006 - Hi Kris, See chfpatients.com/tests/bnp.htm for BNP results explanations. If his "usual" BNP reading is 1900, he needs some medical advice from a different doctor to be certain he is being properly treated for his heart failure. He absolutely needs to see a heart failure specialist.
     End-stage heart failure is when meds no longer control heart failure symptoms. Treatment changes can often improve "end-stage" patients, though. He may need meds changes, dose changes, an implanted device, or other therapy options. End-stage patients have all the usual symptoms, but more severely. Jon.


Sherri, February 2, 2006 - Hi, I often read the board but only sometimes post. It is great to see so much activity on the message boards. As usual, thanks to Jon for all his work. I came across this recent article regarding L-arginine and was wondering what it all meant: www.nutraingredients.com/news/ng.asp?n=64859-l-arginine-may.
     I wonder if these initial results might apply to CHF as well? email_src@yahoo.ca
 
Jon's note: Quick note - the dose in this trial was considerably higher than is usually recommended and the endpoints of vascular stiffness and EF are kind of strange since arginine in CHFers is reported to increase energy level but not necessarily improve numbers. I also wonder if they gave patients the whole dose at once - it should be taken in 3 smaller doses during the day.


Jane A's February 2 reply to Milly R's January 29, 2006 - Hi Milly, I was diagnosed in June and just started cardiac rehab in January. I can't imagine your frustration and fear, both for your own self as well as for your ability to help care for your husband. The meds do take some getting used to and it seems like when you finally adjust, they raise the dosages.
     Whenever I feel like I'm not progressing, I look back at how I felt 3 months or 6 months ago. It's more objective than the day-to-day ups and downs. Depression is normal but no fun. Ask for anti-depressants if you think you might need them. Don't be too embarrassed to ask for counseling. Even an informal chat with clergy can provide you with some insights as to "normal" feelings and provide contacts with people who have been through this and can offer guidance and support.
     I don't know how CHF would affect someone your age (I'm only 44) but if you're not seeing improvement, make it a point to say something to your doctor. Maybe your meds can be changed. You've probably been seen by many doctors but do you have one that oversees everything, sort of the "hub of the wheel" that knows all of your medicines, knows all of your other doctors, and most importantly, knows you? Not just you the patient, but you the person? That doctor can be your advocate. If you feel you're not progressing so well, tell that doctor and he can talk with the others to come up with something to help.
     I hate to say it but sometimes doctors are busy and treat us like they're gods and we are stupid. If you think your doctor is thinking, "She's doing well for an 86 year old" but you're thinking, "I'm nowhere near what I used to be," tell him so. Sometimes treatments become pigeon-holed and common sense is forgotten in the world of medicine. Sometimes they just need to be reminded that all people are individuals and medicine can be adapted to individual needs.
     Seeing you with enough spunk to take out your ventilator tube and surf the web at 86, makes me believe you are one heck of an individual! Good luck! sewsew@adelphia.net


Pat W, February 2, 2006 - Hi to all, My name is Pat and I am 43 years old. I used to frequent this web site quite regularly in 2004 and 2005. I was then just getting to know that my cardiomyopathy was serious and needed my undivided attention. I lived in a very small town with very limited resources. I learned a lot from Jon and the people from this web site. I am still in touch with a few of the people I met here. Well, now I guess I will update my story.
     In July of 2005, I started to have mini-strokes due to pooled blood in my heart shooting through my arteries to my brain. I was rushed to the emergency room on the 5th of July. I never saw my house in New Mexico again. I was rushed to a larger hospital in Albuquerque. There was when I first heard the word: Transplant. They told me I needed a new heart.
     After two weeks there I was airlifted to Tucson, Arizona University Medical Center. I stayed there for a month getting evaluated for listing. I was eventually listed in August. I was sent home with an ICD and a milrinone infusion pump to give me IV medicine that helps the heart squeeze better. Those were my bridges to transplant. I was listed as a 1B, pretty much top of the list, short of being at death's door. The docs and staff at UMC are to be commended for all their dedication, support, and expertise. Dr Copeland, Dr Bose and the rest of the cardiothoracic team are wonders to medicine. They kept me going, and watched me weekly, sometimes daily.
     I was in end-stage heart failure and it was beginning to show, and catch up with me. My 9 year old son kept reassuring me that I'd get a new heart for Christmas. On Dec 21st, we were sitting down to lunch when my husband's cell phone rang. It was my transplant coordinator saying they had found a donor. I was numb. They gave me a time to be at the hospital. Apparently they were keeping my donor's body alive until they were all set so my window of time was a bit longer than most.
     I arrived at the hospital at 3:00 and began to prep, meaning loads of tests, loads of labs, but all done very quickly. Time was getting closer. By 6:40, I was downstairs in the operating room holding area. I kissed my family and the next thing I remember was 2 days later and I felt like brand new. I was up talking, smiling, my body was working again. It has been a little more than 6 weeks since the surgery and I feel wonderful. Praise God!
     I have had no signs of rejection and I have been tolerating my meds, and exercise well. I just wanted to pass my story on to anyone that it may help. So if you hear the word transplant, know that it is not so bad. It can be a second chance at life. I have met two gentlemen, one who has been transplanted for 10 years and the other who has been transplanted for 17 years, both happy and healthy and enjoying life.
     Thank you Jon for this forum and God bless each and every one of my fellow CHFers. Pat, previously New Mexico Pat. rollnright@cox.net


Paul W, February 2, 2006 - Hi everyone, I'm new to this site and I must say that it has more information than I have seen anywhere. I looked around for awhile but didn't really find what I was looking for. I was wondering if anyone could help me.
     It looks like a lot of people here have IDCM but I have been diagnosed as ischemic cardiomyopathy and am trying to find out more about that. Does anyone have this and what is the difference? Thanks for any help. DWOLF@nc.rr.com


Jon's February 2 reply to Paul W's February 2, 2006 - Hi Paul, Ischemic cardiomyopathy is heart muscle weakness caused by not enough blood going to your heart. It can happen slowly over time due to too-fast heart rate, blocked arteries, arrhythmia or other reasons. It can also happen quickly from heart attack, etc. How well you recover will depend partly on how much heart muscle was damaged and how badly. Sometimes heart muscle cells in ischemic patients "hibernate" and can eventually recover function while other times the cells die and don't recover at all. Do you know the exact cause of your ischemia? Jon.


Donna V, February 3, 2006 - Hi all, By my best friend, who is my pharmacist, I was told after the fact about the Coreg shortage. She did not tell me about it until after the crisis had passed as she did want to alarm me. At one point she did tell me she owed me 10 on my last refill. I thought nothing of it. I now have those ten. She knew I'd freak and want no part of switching to Toprol-XL. For a short while her pharmacy was filling Coreg scripts by the week or days. I am told that Coreg is back to normal production. We might not like Coreg so much but it helps keep us alive. Some do fine with Toprol-XL but Coreg is better for some of us. I'd have been upset if I could not get it. Donna V. dmvditty@aol.com


Lance F, February 3, 2006 - Hello and thanks to all who have contacted me about my questions. Hi Margaret, your statement concerning my need to control the OSA (obstructive sleep apnea) makes me wonder if you might have a crystal ball. <g> It is indeed true that I have simply been unable to tolerate the CPAP mask. They increased my ramp time so I will fall asleep before it maxes, but in my sleep I am taking it off and I end up waking up in the morning with the thing blowing away sitting on my nightstand. Although all doctors have stressed the importance of using it, I just wish there was an alternative.
     This is the first time I have heard of an electrophysiologist. I will definitely look into that. Yes, I have had many holter monitors and they all said don't worry about them. However, when I was in cardiac rehab, the MD there took me off the bike and said I was in unsustained V-tach when I had no symptoms. When I questioned my PCP, he said that it was probably because I was still in decompensation (which is bogus).
     Hey, Scott. The diuretics really haven't been doing what they should, apparently. Recently, the average have been about 160/90 (which beats the 214/140 I had in the emergency room when I was first diagnosed with CHF but not what the docs need to improve my diastolic function. Also, you would think that on 100mg of Coreg my heart rate would be low but I am still in the eighties. However, answering your questions will reveal why.
     I am currently at 297 lbs and my exercise has been nil. My LDL is awesome (55) but my HDL is also very low and my triglycerides were at 350. I have begun walking but have been experiencing pain in my legs (probably unrelated to CHF, more antiphospholipid and rheumatoid arthritis). I have not been as faithful to my fluid restriction but I do restrict to 1500mg of sodium a day. I take my diuretics daily, 40mg of Lasix and 25mg of spironolactone in the morning and 40mg of Lasix in the evening. Zaroxylyn has been tossed. Overall, I feel like crud but again, I am pretty overweight.
     Besides the tons of EKGS, holter monitors and bloodwork, I have had four echos (the most recent shows some more calcification and stiffness in the left ventricle) and 2 stress tests (1 treadmill, 1 adenosine). My EF has been normal (around 60% then down to 55%) and heart size is upper normal limits, however both are common with diastolic failure. Finally, my cardiologist is not a CHF specialist. None of them have been. Now that I am in a major city, I am hopeful that will change. I know you are right about the exercise but lately fatigue and SOB have been a major factor.
     One last thing for anyone who can answer: How can I tell if the cough is a side effect of my ACE inhibitor or a symptom of my CHF? I suggested switching to an ARB to my last doc and he just said the cought is the CHF. When I asked why he just said it was a symptom. Can someone explain why that is? Thanks! lgflood@yahoo.com


Jon's February 3 reply to Lance F's February 3, 2006 - Hi Lance, the only way to know if your cough is drug related is to do what is called a "drug challenge." With your doctor's supervision, you discontinue the drug in whatever fashion is safest. You wait at least 2 weeks, then restart the drug. If the cough goes away when you're not on the drug, then comes back when you restart the drug, it's an ACE inhibitor cough and a switch to an ARB is in order. Cough can be a CHF symptom but the above is the only way to find out. Jon.


Barbara P J, February 3, 2006 - Hi, I was just now reading the January posts. Several mentioned being one of the old timers on this site. I know I was diagnosed in January of 1996 and was told to go home and get my affairs in order - not good news for a 55 year old. Now I'm 65 and just had an echo with very good results. It took a very long time for me to accept the fact that I simply could not go like I did before. Now, I do what I feel like and rest (sleep) when I feel like it. Also, we've taken on raising a grandchild (now adopted by us) who was 10-1/2 when he arrived. He's now almost 16 and I truly can't say if we've been best for him or him best for us. God does work in His own way and we simply follow. wantedinfo@bellsouth.net


Scott B's February 3 reply to Cheryl C's February 2, 2006 - Hi Cheryl, There is a Coreg generic available in some countries. People should be able to source generic from Canada. I am assuming the generic is a different manufacturer. Scott B. kitchenerguy@hotmail.com


Paul W's February 3 reply to Jon's February 2, 2006 - Hi Jon, Thanks for the answer. Yes, I do know the cause. I had 2 heart attacks in about 4 months and the second one was a 100% blockage of my LAD coronary artery. Although I don't remember anything about it, the people at the hospital said I would have died had I not been in the emergency room at the time I had it.
     Anyway, after having cardiogenic shock and an IABP put in, they put a stent in and my EF at that time was 12 to 18%. Everything went okay for a little over a year and then I started to just pass out while walking around. They then put in an ICD due to snycope (fainting) and sick sinus syndrome. My EF had risen to 33% but has dropped since then to about 25%.
     One good thing is that my defib hasn't gone off yet but the last time I went to my cardiologist he said that my heart was being paced about 13% of the time due to bradycardia (slow heart rate). Now I have to go back and talk to him about that. I also just wanted to thank you for this site. Great information. DWOLF@nc.rr.com


Marty M, February 3, 2006 - Hi Everyone, I've had an ICD for about the last 1-1/2 years. This past November, for the first time, my ICD fired five times total. I was put on amiodarone since that time and my dosage has been reduced to 100mg per day now. So far, no ICD firings.
     I would like to hear from anyone taking this drug with an ICD and if they have had their ICD fire while on this drug. Thanks, Marty. martyam@telus.net


Wayne R, February 3, 2006 - Hi Jon, I hope you are doing well after your move. I'm writing to ask if you and others have the same slightly uneasy feelings as I do about providers of the stem cell therapy that is being so highly touted. You will notice that on their web pages, none of the patient testimonials give any measurable or quantifiable data on their before and after heart conditions. Why not? It is not enough to simply say that, "now I feel better." A lot of us have gone through a "feel better" phase with the standard medical reigimen as outlined in your treatment guidelines.
     Believe me, having lived with IDCM for 4 years, I wish for a magic bullet as much as anyone, but I would hate to see false hopes raised in any of us. It is already difficult enough to maintain hope as it is. Take care of yourself, Wayne. whreos@earthlink.net


Jon's February 3 reply to Wayne R's February 3, 2006 - Hi Wayne, "Stem cell therapy" is a loaded phrase because there are so many different kinds being tried. Also, not all therapies that are called stem cell therapy use actual stem cells. So we need to be very specific about which therapy we are discussing. Are you talking about the TheraVitae therapy called VesCell?
     I talked to one of their company officers and he sent me a press kit but like you, I was unable to find any specific clinical information and in fact, mixed in with their information was information on a non-TheraVitae therapy that uses bone marrow cells (that treatment is in FDA-approved USA trials now and is unrelated to TheraVitae or VesCell). I found it to be very misleading so I have doubts about the company, although it is possible that their therapy gives benefits. Jon.


John K, February 3, 2006 - Hello Everyone, I hope everyone is doing okay. I am celebrating my one-year anniversary with CHF by kicking it in the butt along with my weight problem. I have had no problems over the year and I'm losing that bowl full of jelly of mine. I walk up to 2 miles a day now with no problems! My doctor is looking to cut back on some of my meds and I am looking foward to going back to work full-time. Thanks to my family and God there is no way but up for all of us. Good luck to everyone and stay positive! kaderlyj@bellsouth.net
 
Jon's note: Which meds does he want to reduce, and by how much, if you don't mind saying?


David W's February 3 reply to Linda B's February 1, 2006 - Hi Linda, I started working part time last year. The SSA disability rules are a little confusing. You have a nine-month trial work period where you can work whatever you want to work, but it you work full time, you could lose your disability payments. You can make up to 620 dollars US a month and that is not considered substantial income and won't count against you. After your trial work period, you can make up to 820 dollars a month. Working probably will start a review too.
     I worked from April to December. They put 7 months toward my trial work period. I am still on SSD as I guess they don't think I can work full time. This year I am going to work part time and try to stay under 620 dollars a month. I did not know how much I could work at first but 4 to 6 hours a day 3 to 5 days a week works for me. I sold tickets at a theatre in Branson so it was not too hard. I could sit down all the time and it was just light office work. I was not as fast as they liked but I did not care. I go at my own pace and I think I do as much as the ones who go real fast but make mistakes.
     I probably will work at a different theatre this year. I worked at Yakov's Theatre and he is very busy. I think I will work somewhere not as busy. I think if I make under 620 dollars a month, SSD won't bother me. However, I am pushing 55 years old and they are easier on you if you are older. They have different harder rules sometimes on younger people. I kind of think they think I am going to kick the bucket pretty soon. They didn't think I would live this long and neither did I but I am fooling them and myslef as I am slowly getting better as time passes.
     I had gastric bypass surgery in October of 2003 and lost a lot of weight and that has really helped my heart. Not carrying around all that blubber just has made it easier on my weak heart. wilsond537@aol.com


Joy K's February 5 reply to Linda B's February 1, 2006 - Hi Linda, As I understand it, during the 9 month trial period you can earn any amount and still continue to receive your usual monthly SSA check. During this 9 month trial period, if one of your monthly gross amount earnings are less than 620 dollars, that month would not count toward the 9 month trial. In other words, you could work a year or even more if your gross monthly totals were less less than 620 dollars per month and still continue to receive your SSA check. Once you have reached 9 months of receiving gross income of 620 dollars you may then continue to earn up to 830 dollars per month without losing your usual SSA check. If you go over this amount by one cent you will lose that month's SS check.
     Yes, you are subject to review but I believe this is true of anyone receiving benfits. My friend, who works as a unit clerk, has worked for many years following a kidney transplant. The drugs she received after transplant had an adverse effect on her and this resulted in a permanent tracheostomy and the loss of total range of motion with her left leg. She also has cardiac problems and lost one eye as a result of diabetes. She is able to work her scheduled hours but again she loses her entire SSA check if she goes over the 830 dollar limit. This did occur to her when the unit received quite a few admits and she agreed to stay and help the nurses take off orders and such. Healthwise she cannot work full time hours but wants to remain part of the team at her work place. I don't know how they would manage without her expertise. She does a wonderful job.
     I hope my info was of some help. I am trying to go back to work. I am limited to two days a week. I am a registered nurse and I am doing quality control work at this time instead of my usual nurse manager's position. Just after returning to work, my left ventricle decided it was time to enlarge, and enlarge it did. Whew! It really did get big! In addition, my mitral valve flaps because of the increasing growth of the left ventricle have grown further and further apart so there is more regurgitation. My EF then added to the decline.
     I don't know if I will be able to contunue working or not. An echo coming up in April will let me know if the trend for decline continues. Actually when I am at work I feel quite well. When I get home I am very tired and I know that right now doing more than a couple of days per week at work is my max. Who knows what next month might bring? I have an appointment next week with the "big boys" regarding mitral valve repair. Take care, Joy. pjkachel@aol.com


Evelyn G, February 5, 2006 - Hi everyone, I have noticed since my diagnosis of non-ischemic DCM with early signs of heart failure in May of 2003 that I look at death in a different way. It seems to me that I tend to become (blank) for lack of a better word, almost numb, in a realistic kind of way. Over the last few years if someone I know passed away or someone I know had someone close to them pass away I'm numb to the pain but I have this strange outlook on it like (it happens) because it's a part of life. Maybe it's a way of denial or avoidance, I'm just not sure which, but it makes me feel very wierd and I have a hard time dealing with it.
     My brother's wife lost her father yesterday to a vehicle accident and this has become an issue once again. I thought I would share this with you all and see if this is related to our situations. Thanks for listening. Evelyn. eveysue@hotmail.com


Sandy N's February 6 reply to Evelyn G's February 5, 2006 - Hi Evelyn, My thoughts on death have sure changed. My brother died 19 years ago at the age of 43 from a bad heart and I went to pieces. Death scared me then but then it was so different for me, losing my big brother. My mother died 9 years ago and I handled that much better, but it was still so sad for me.
     My death is something different. I'm not afraid anymore because I truly believe all my family members will be there waiting for me and I do have all my earthly things in order. I have had many wonderful talks with my three grown children and although they are in denial (Mom's not going anywhere), I feel okay with leaving them now.
     I do think of me not here and it's kinda hard to think in those terms because I will miss seeing the sunrise the next day and will miss the sweet faces of my grandchildren, but I'm at peace now with my life. Although I'm too young to die yet (58) I can say, "I have had a great life" and it's okay. However, I'm still doing everything I can to keep myself here. I pray you too can come to peace with yourself and just think of now and enjoy every moment! Best of luck to you! bleuskiiisgrl@yahoo.com


Marty C's February 6 reply to Evelyn G's February 5, 2006 - Dear Evelyn, If you'll indulge me in a few religious thoughts in response to your question, I do have some things for you to think about on the whole issue of dying. Death is a concept I don't believe God ever intended us to have to deal with, since he made us in his image and He is eternal. Still, He built us in such an amazing way that our minds can cope with pain in many different ways. Strange feelings of insensitivity when others die is just one example of how we deal with dying. We want to turn away from feeling the hurt and loss involved, especially when our illness forces us to confront the whole thing. That's just one way of dealing with it, and you're not a bad person for having the reaction you described.
     The good news is that on top of making us able to adapt to the stresses of life and reality of death, God also provided true victory over death in the form of his son, Jesus Christ. As I've seen people die who were close to me, this truth came to me each time - death is so foreign. It occurred to me that many people who cry at funerals are crying not only at the loss of someone they cared about, but also the very idea that a funeral awaits all of us at some point. Accepting the reality that we are all going to die some day is a heavy weight, so our minds handle that reality by only shouldering as much of the weight as we can handle.
     An example of this can be seen in the way children deal with death much differently than adults. In some ways, I believe it is better for us to become like little children if we are to clearly see God's plan for our lives on this earth and beyond. Today, each of us should be thinking primarily about living and not dying. It's a paradox that dwelling on the reality of death can so saturate our thoughts that we waste the life we do have. Most of us have a lot of days left - my suggestion is that we live each day as a gift, live them as fully as we can, and focus on loving God first, then those special people living their own lives around us just as much as we love ourselves. This is more than some platitude or catch phrase, it is truth. Carpe Diem, and God bless. Marty. padre45@aol.com


Faye B, February 6, 2006 - Hello Jon, I am currently taking 100mg twice a day of CoQ10. I have been getting it at GNC stores. What brand name do you use? I have to travel 30 miles to purchase it at GNC and there have been times when they are out of it. I have idiopathic dilated cardiomyopathy with symptoms for about 7 years but was diagnosed only last spring. I have gone from 15% EF in April to 33% in June but there was no improvement on my December echo; in fact, my left ventricle and left atrium have shown signs of enlargement since June. I now have tricuspid leakage along with the mitral valve leakage. My Coreg is at only 12.5mg twice a day due to low blood pressure. I am also on Vasotec 5mg twice a day, Lanoxin at 0.125 mg, Aldactone at 12.5mg along with 250mg magnesium, one gram calcium, 500mg vitamin C, a multivitamin, Estrace at 1 mg and fish oil at 1000mg. I have seen where clinical trials are going on to see if post-menopausal women do better with idiopathic dilated cardiomyopathy if they are on estrogen.
     Have you heard of any such trial or results of a clinical trial? Many thanks. Faye. fbrown5150@aol.com
 
Jon's note: No, but I am way behind on new stuff lately. I don't take CoQ10 since I don't think it would benefit me in my current situation.


Sandy N's February 6 reply to John K's February 3, 2006 - Hi John, Please be very careful about what meds you will be stopping. My doctor told me I must stay on my meds for life, no matter how good I'm feeling! Please look into it first or get a second opinion from a CHF specialist! I'm thrilled you're feeling so good and want you to stay that way. Good luck to you! bleuskiiisgrl@yahoo.com


John K's February 6 reply to Jon's February 3, 2006 - Hello Jon, First off, thanks for a great web site! My doctor is looking to cut my Coreg from 25mg to 12.5mg and see how that goes. Then we are going to see about cutting my Altace from 2 a day to one. I have cut my Demadex from every day to every other day and boy do I love that. My bathroom is starting to miss me. Walking is the thing that has helped me the most. I try to walk every day, rain or shine, and even at work.
     My best medicine is my family - they have been great. Now it is Little League time again and that is the thing I enjoy most. Last year when I was diagnosed with CHF I only missed one of my son's games when I was in the hospital. He helped his team win a championship and helped me on the road to recovery. Watching him hold that trophy over his head made me want to beat this problem and I am going to! We all beat it with support and the help of web sites like Jon's. The only thing we need is a chat room for all of us. The best suggestion I have is everyone should get a AIM (AOL) screen name and put everone on their buddy list so they can chat live to someone. Good luck to everyone! My AIM screen name is mrgrouchburger. kaderlyj@bellsouth.net
 
Jon's note: Demadex is just used to treat symptoms so if not needed, it should definitely be reduced or even eliminated. However, reducing your beta-blocker and ACE inhibitor dose is very, very risky. My EF is normal but I remain at target dose on both those drugs - for good reason.


Nancy S, February 7, 2006 - Hi, My blood pressure is going up and down, and I know it's normal for this to happen. It ranges from about 98/45 to 135/70 and the highest was 156/74. Normally it's around 105/54. I'd like to know if my heart rate staying around 80 when I'm resting is normal? I asked my cardiac nurse what normal would be and she said that the doctor likes for it to be between 60 and 80. A couple of times it's been in the high 90s and once 101. Those times were resting also but have been awhile ago. I do have the BiV pacer if that's a factor. Thanks, Nancy. ns1@alltel.net
 
Jon's note: Personally, if a CHFer's heart rate stays in the low 90s or less, that's a good thing.


Lori K, February 7, 2006 - Hi everyone, I have not posted in awhile but was hoping someone might be able to help me. I have IDCM (5 years), asthma, and adrenal insufficiency. The last few years I keep getting these bouts of really bad muscle pain with pain in my chest as well. It is worse with exercise or just any movement. I have some arthritis and spinal disc problems, but the orthopod says that is not causing the pain. The cardiologist says it is not ischemic pain, and the internist is baffled. It comes on for a few months then just disappears.
     Only my CHF doc thinks I have a general myopathy. I went to the University of Chicago and they said I have low levels of carnitine and elevated lactic acid but not enough to be called a myopathy. Has anyone had muscle pain or experienced this mystery illness? The thought of a few months of this again is so frustrating. Jon, does this sound like what you have had? Good to see the site running full speed! Lori. thegoof86d@aol.com
 
Jon's note: Actually, it sounds similar. My PCP believes I have some other problem, perhaps a persistent but not always-nailing-me virus. Maybe, maybe something else. I say make those docs keep looking.


Joy F, February 7, 2006 - Hi all, My partner Paul (age 41) was quite ill last November with a hybrid flu/cold, plus a negative reaction to medications, and from that time he has had angina. The family doctor considered that Paul may have had a small heart attack during that phase. Initial EKGs have not confirmed that possibility. The treadmill test indicated something is amiss, though and he is scheduled for a catheterization next month. They have put him on a beta-blocker and aspirin in the meantime.
     Paul resigned from farmwork as he could not keep up. He returned to his motor mechanic trade and is still having angina. Even a bit of gardening or some wood chopping is too much. Paul was healthy and robust and very active. What we are trying to research is the link between viral/bacterial infections and heart damage. I know it is there but when I search, I drift off target. Please help us. Joy F. farrell-kelly@xtra.co.nz
 
Jon's note: Bacterial and viral are two widely differing problems for the heart. If they do a biospy during his cath, they should be looking for anitbodies to known viruses to help determine the cause.


Bill H's February 7 reply to Evelyn G's February 5, 2006 - Hi Evelyn, Dying kind of scared me too for awhile, then I realised that in a 100 years from now most everyone alive on earth today will be dead. That's a little strange maybe, but it helped me. bj5250@yahoo.com


Tom S' February 7 reply to Evelyn G's February 5, 2006 - Hi Evelyn, I've always lived by the adage that you die only once so live every minute you can. So far I have managed to live 10 years more than I was originally told I would live so something must be going right. bigheart@muchomail.com


Jeannine's February 7 reply to Jon's February 3, 2006 - Hi Jon, Just want to clarify your understanding of TheraVitae's reference to Dr Patel's clinical trial results using bone marrow. The chart is meant to show the effects of the ACPs (Angiogenic Cell Precursors) injected via Dr Patel's direct injection method. Before TheraVitae and within US clinical trials, doctors gather the APCs from bone marrow. However, TheraVitae developed a process in which those same ACPs are gathered from a half pint of blood rather than the more painful, invasive method of bone marrow extraction. They are supposed to be the same stem cells and so far have shown the same results whether they come from bone marrow or blood draw. TheraVitae encourages patients to participate in US clinical trials if they are eligible. There have also been many patients who had been misdiagnosed by their own doctors and received the correct diagnosis and recommended treatment thanks to TheraVitae and their affiliated doctors such as Amit Patel. I hope you will keep an open mind regarding this treatment. It really has been a blessing for me and my family. Thank you for letting me share my thoughts. Jeannine. jeannine_lewis@yahoo.com


Jon's February 7 reply to Jeannine's February 7, 2006 - Hi Jeannine, Perhaps re-reading my post may help you understand my position. The literature I was sent would definitely have confused a typical patient into thinking that the bone marrow trial results belonged to TheraVitae, which they do not. The literature shows no proof whatsoever that results are the same with both collection methods and until I see differently, I simply cannot accept such a statement. I did read their site info, and I read all the info a TheraVitae company officer sent me.
     I do have an open mind, just one that demands some facts and straightforward information giving on the part of all parties involved. In fact, my closing words in the post to which you replied were, "I have doubts about the company, although it is possible that their therapy gives benefits." The benefits are definitely possible but in my view, TheraVitae is going too far in giving out positive subjective information while giving out virtually no useful clinical or technical data. If I am wrong, please feel free to send me that data.
     My main point in my previous post was that "stem cell therapy" is a drastically over-used term right now - many very different therapies are being lumped under that name, so we must be very careful to be specific when discussing them. Jon.


Cheryl C, February 7, 2006 - Hi all, Upon reading the posts today, I just had to make a comment. Well said to both Sandy N and Marty C! I have trouble expressing myself sometimes, but you both pretty much expressed the way I feel about all this. I'm not ready to give up and throw in the towel just yet, but neither do I want to sit around feeling sorry for myself. Live each day as if it's your last, and you'll find that your life has been full, not wasted. Cheryl C. cocojo86@yahoo.com


Maryann H, February 9, 2006 - Hello, My father who will be 89 next week has congestive heart failure. What would be the reason for someone who has CHF to lose their appetite? This happened months before and realized it was due to high digoxin levels. We called his cardiologist and he ordered a blood test and decreased his pill to 3 times a week instead of every day. He was fine for a long time and now it is back. What are other reasons that could cause this? I do realize he could have high digoxin levels again so I will be having that checked again.
     By the way, I found out that information from this site. My father's cardiologist is amazed at all I know when I take him for his visits because of years of reading and asking questions on this site for my son, who has IDCM. This site is a godsend. Any input would be appreciated. mahall1958@hotmail.com


Esteban B, February 9, 2006 - Hi all, My name is Esteban Bonilla and I received Theravitae's J-9 direct stem cell injections offered at the Bangkok Heart Hospital on December 19 of 2005. It has not been that long and already I can truthfully tell you that my overall health has improved greatly. My health before that was really bad. My EF was 10% and I was class 3 to class 4 and was in need of a transplant. My first check up was on the January 24 of 2006 and the x-ray showed no CHF.
     Last year before my stem cell procedure, I could not walk without being severely winded and fatigued. I would have to stop frequently to catch my breath and to allow the pressure in my chest to calm down enough to continue. I have begun to walk since the surgery and I can walk a mile in 14 minutes non-stop and have walked as long as one hour without severe chest pressure and fatigue. I am not 100% but I know what I was feeling before and what I am feeling now.
     I know many people are skeptics and many more fear the unknown but if you were or are facing decisions such as heart transplantation or death; and you know there are other alternatives and no fetal stem cells are used, you have a responsibility to do all that you can to save your life. Theravitae is an alternative. They may not be able to save everyone but nothing should ever stop you from asking and or trying. Life is precious. You should know that you are worth it and it is worth going to Bangkok to get the procedure done. The doctors, hospital, nurses and staff are the absolute best.
     I went alone and it was a wonderful experience to have such a change in my life in just a few weeks time. Read about my story by doing a name search. An MSN story even has a photo of the surgeon injecting my heart with my own cells. If you have any questions, e-mail me.
     Good luck and I hope this helps with any aprehensions you might have. TheraVitae is the real deal. They are saving/changing the lives of many. God bless them and the work they do. deepsixdive@hotmail.com


Paul W, February 9, 2006 - Hi Jon, I'm very new to this site but I have another question. Last week I received a letter from SSD saying that my reconsideration had been denied. I thought it would be no problem and called my lawyer to get a hearing set up. I met with her yesterday and she said that it takes around 18 months to get a court date.
     So, I was wondering if anyone else on this board is from North Carolina and could possibly share some experiences with me. I am (was) the breadwinner in the family and there is no way our finances will hold out. Also, if anyone has any experience with SSI, I would appreciate that also. Thanks, Paul. DWOLF@nc.rr.com


Scott B, February 9, 2006 - Hi Jon, Your site it the best for CHF, hands down. A couple of things. I'll personally pledge 50 dollars US if you get a new message board for your site. There have been some exciting posts regarding stem cell discussions, heart transplants, and Coreg shortages. It would be terrific if there were different threads where these topics could be thoroughly discussed.
     I am cautiously optimistic about the stem cell procedures. VesCell was put on the map overnight when singer Don Ho underwent the procedure and felt better within weeks. There is a January 23rd article about this at http://the.honoluluadvertiser.com/article/2006/Jan/23/ln/FP601230356.html. I discussed the stem cell research with a cardiologist friend, and it appears the stem cell procedure is working. There is open debate about why it works or perhaps more importantly, how long the effects will last.
     It's natural for CHFers to be skeptical. We do not need more disappointment. Thanks, Scott Brown. kitchenerguy@hotmail.com


Jon's February 9 reply to Scott B's February 9, 2006 - Hi Scott, I'm neither convinced nor skeptical yet about TheraVitae's theory. However, when a company's literature seems to imply associations with other research that don't really exist, I will question the procedure and its results more than usual - and I question a lot regardless. <g> I hope it works and works well. The therapy does need some serious research on who will and won't benefit if it works. This is one of the greatest problems in new therapies for CHF - some therapies work very well on some patients while the same therapy kills others. Vesnarinone is one example, a trial I was in.
     Also, many therapies that looked great all the way through phase 2 FDA testing bombed big-time in large patient populations during phase 3 testing. One example is Enbrel (etanercept). The company needs to do large well-run trials before we will actually know its potential benefits and risks. I'm eager to see them done although I'm still waiting for trials of therapies that will make us CHFers with normal EFs but lots of symptoms feel better!
     No new message board will appear here any time soon. This one has serious drawbacks: it is terribly time consuming for me to run, depends on how I feel for it's reliability (and I have more health problems than I like to discuss), does not separately thread discussion topics, etc. On the other hand, there is virtually zero spam, no cursing, bad attitudes are kept mostly out of sight, there are no banners or ads, no registration or fee is required to participate, and most of all you know a real person runs this site and reads every post and that person cares about the people here.
     If I were out to make money on this site, I could do it. The offers for advertising are there, people have repeatedly said they would pay a fee for site use, and more. I seem to have an overblown sense of responsibility though and it tells me that what works, works, and this system works for the most people at the least expense. To be honest, for those who want a more modern message board format, plenty of other forums currently exist.
     One of the reasons the posts don't go up faster is that I am actually accessible. I answer every serious e-mail I receive, and that's a lot of e-mail. Again, it's that sense of personal responsibility. I think, "What would I want if this site existed when I got CHF" and that's how I try to run it. Hey, if I got paid by someone by the hour for all the work I've done on this site, I'd be rich already and turn it all over to someone else. ;-) Jon.


Jan H, February 9, 2006 - Hi Everyone, I am Jan who back in December asked if there was any hope for my husband who had been hospitalized for nearly 2 months by November 4 with CHF, kidney failure, pulmonary edema, a BNP of 1900 and his EF dropped from 25% to 8 to 10%. As you can see, he had more going on than CHF. Diabetes started the whole mess and each organ was eventually effected.
     I want to thank the wonderful people who e-mailed me with hope and reasons for courage. He fought so hard - through bipaps and needles and tests and dialysis (they started dialysis because his heart was so weak that they couldn't balance the fluid levels between the heart and kidneys, but it was hard on him, wore him out) but yesterday his poor body just said it had had enough and he died.
     God works in mysterious ways. We had a fabulous Monday, his son and grandchildren visited and had a great visit with laughter and teasing and plans for the future. He was actually scheduled to come home by Friday. On Tuesday morning at 4:30 AM he called to tell me that they were taking him to dialysis at that unreal hour because his potassium was elevated. I couldn't be with him during dialysis so I ran a couple of errands. He called me when he returned to his room, something he had never done in the 3 months he was hospitalized. He said he was tired and had a stomach ache and we talked and I told him I'd be over as soon as I finished going to the bank. We said I-love-you's and see you soon. He hung up the phone and collapsed and died.
     God knew that I needed that call, that I'd been by his side every day for 3 months and I'd never be able to handle not being with him at the last. He knew how much we loved each other and gave us another last chance to tell each other before he blessedly and kindly let my Conley go to heaven without pain and fear and terrors of the ICU. He had CHF for over 20 years. The first 10 he didn't understand the seriousness of this chf and diabetes, the last 10 years he fought hard and stayed on the straight and narrow.
     I only wish that I had known about Jon and this site 5 years ago. I've learned so much and received peace from you all. I can barely breathe right now from the pain of losing my best friend and husband, but I know that the Lord was merciful. I don't know how I will live without him. I don't know how to get through the next two days of the funeral - with God's help, I guess.
     Please take this CHF seriously and listen! My Conley lived a long time with it. Pray and don't ever give up - Conley didn't - me either. God bless and be with you all. Jan. Jhu2323@aol.com
 
Jon's note: That you make the effort to write at this time and end your message with a note of hope and urging to never give up shows that Conley married well. My sincere condolences and prayers.


Chuck F, February 9, 2006 - Hello everyone, I have not posted for awhile but I have been following. I am currrently class 2c but have been much worse. I have started working out again and I am looking for a watch heart rate monitor that has an audible alarm. Due to having an ICD it would have to be a strapless one. Does anyone have a recommendation? Thank you. chfrancis@adelphia.net


Dee C's February 9 reply to Jon's February 7, 2006 - Hi Jon, I too have had the stem cell therapy called VesCell in Bangkok as Jeannine did. I just went for my six month check-up and the interventional cardiologist was surprised at the collaterals that had grown near the injection site done in July of 2005. I am sure most people would like more stats but since I am one of those stats, as is Jeannine, I think we have the ability to state what this has done for us, such as giving us a quality of life we did not have before or had no hope of getting any other way. So, I say to each cardiac patient, follow your heart and decide what you want to do for your health. When you have nothing left to choose from, choose health. deecgo4it@yahoo.com
 
Jon's note: One thing we certainly all agree on is that the more options there are - whether proven yet or not - the better for CHFers.


Candace M, February 9, 2006 - Hi, My dad has been diagnosed with heart valve disease. His cardiologist did not tell him at what stage his heart failure is. He has the symptons of extreme weakness, swelling of legs and feet, and shortness of breath. His cardiologist seems rather indifferent and is really not treating all of this with medication to help him at all. Can anyone suggest what I can do to help my dad? Can I call the doctor myself or should I try to get another cardiologist that will try to do something. Help! Thanks. jhwyomingcs@hotmail.com


Kris P, February 9, 2006 - Hi, I'm wondering why my 64 year old father (class 4 CHF) barely has a voice. It is so hard to hear him speak. His voice has been like this for 2 months. Any ideas would be great! Thanks, Kris. kpstyling@comcast.net
 
Jon's note: A quick site search turned up something at chfpatients.com/archives/archive5-2002a.htm#LouH5-6. Be sure to follow all the links and do an Archives search of your own as well. I seem to recall someone else with this problem and it was meds related, possibly from an ACE inhibitor.


Bobby M, February 11, 2006 - Hello everyone, I have just been diagnosed with CHF in September of 2005. One the first symptoms I experienced was the excessive cough and retaining water. When I found out what it was CHF I was baffled. I was like, how could this have happened? Well, I am a cancer survivor and the doctor who was a cardiologist told me it was a side effect ot the chemotherapy I had recieved in 2000 and 2001. I am currently taking carvedilol, Captopril, magnesium oxide, potassium chloride, furosemide, Spironolactone, and Coumadin (2 and 5 milligrams) as well. I am a little frightened because I really don't know the life expectancy of CHF patients. Does it matter if you are a younger patient? I am only 37. AfterlifeKid@aol.com


Pat Y, February 11, 2006 - Hi, I read where Scott B would pledge 50 dollars per month with conditions. I feel you do a wonderful job for many, many of us. As you are aware I send 50 dollars per month with no conditions. It is support for this site which is so educational. Most doctors do not take the time to really explain our disease or encourage us to participate in our medical care. Therefore, we must educate ourselves. I am very thankful you provide information as well as a board where we can share whatever is needed. I can never explain how valuable you and this site are to us. Please keep up the good work. PTYoumans@aol.com


Lowell P, February 11, 2006 - Hi Jon, I am happy with the board just as it is. I don't know what other format would serve us CHFers better. Lowell. Lpepper3m@aol.com


Tom S' February 11 reply to Paul W's February 9, 2006 - Well Paul, I guess I qualify because I reside near Charlotte and have been on SSD for 10 years without so much as a hiccup. It all seemed very seamless to me when I first qualified for it. The local Social Security office is staffed with some very wonderful, professional and conscientious people. We did all the paperwork via fax or phone and it wasn't until I actually had to sign the final papers that I had to step foot in their office. Even that process was expedited for me because of my condition.
     It seems to me that I spoke with someone in the Social Security office in Raleigh and they asked me a few questions and were very polite and helpful. At the time my EF (ejection fraction) was 15% and my cardiologists said that I was "terminally ill." He also specified that the only treatment at that time to extend life for any measureable amount of time was via a heart transplant. I decided against the transplant and within a few months Coreg was added to my drug regimen.
     Fast forward two years and I received a recertification notice which obviously I was still regarded as terminally ill, and in fact some people I knew and people on this forum died with a better EF and general condition than I had. It seems to me the important factor was, could I be employed in meaningful and gainful employment? The answer was obviously no! Do I feel I could engage in outside employment - no! I also believe my EF played a large role in being recertified on three different occasions. The first time my EF was at 30%, the second 25% and the most recent between 5 and 10%.
     You were not terribly specific about your condition or EF so it is hard to tell why you may have been rejected. Perhaps your could enlighten us with a bit more info about your condition. bigheart@muchomail.com


Marie G, February 11, 2006 - Hi, First, it has been a year since being told I have CHF, DCM with an EF of 18%. I have always been a raise the family, two jobs, keep up the house and love the yard work kind of person. That has changed. I am now a one job, take it easy in the evening kind of person. I am now past the poor me stage and want to take charge of my health as much as possible. I am on the target dose of Coreg and Cozaar and a water pill. My doctor tells me not to wory about my weight, to do whatever makes me happy. Why would he not worry about my weight when I am a good 75 lbs overweight?
     My thinking was I didn't have long. I did ask for a handicapped card from my doctor and was told I did not need one. Does that mean even though I can't walk far comfortably, all is okay? I was told I should think about getting an ICD implanted. That sure does not sound okay. I guess what I am doing here is sounding off to someone, anyone who will listen.
     I have a wonderful, loving family with lots of prayers, but sometime you just need someone to talk to who is in the same boat. I would love to hear from other CHFers with their thought or advice. I am really glad I found this site. Thanks. mmeg1029@aol.com


Barb N's February 11 reply to Kris P's February 9, 2006 - Hi Kris, A husky or almost non-existent voice can also occur when fluid accumulation and/or right heart failure cause congestion and swelling of the jugular vein. This can compress the vocal cords and make speaking audibly or clearly impossible, especially when combined with shortness of breath. My cardiologist has told me when I get a husky voice it's a really strong sign I need to increase my diuretic dose. Protoplasm2@aol.com


Peter S, February 11, 2006 - Hi all, A piece of information is kindly requested if anyone has it, namely the speed and elevation levels for a standard treadmill stress test? That is, what are the numbers for the first stage, second stage etc,...? My recollection is that it is a five-stage test of three minutes per stage, gradually increasing in difficulty, but I am looking for the specific stats for each stage. Thanks, Peter. PeterSperl@cs.com


Debbie B's February 11 reply to Candace M's February 9, 2006 - Hi Candace, I would absolutely get another cardio for your dad pronto. He needs medications for his heart disease and swelling, it sounds like he is retaining fluid too. My mom has valve disease and CHF. She had her mitral valve replaced last spring. Now she is on a beta-blocker and ACe inhibitor, Lasix to keep off fluid, and lipitor as well. She is finally at a place where she feels better. It is such a tightrope keeping meds balanced. I think I would call the doctor myself and if you are not happy then get another doctor - one that will listen and get your dad on the right track! Good luck! Debbie. debster01@hotmail.com
 
Jon's note: Remember that your dad must have signed a HIPPA form before his doctor can talk to you about his care.


Jackie B, February 11, 2006 - Hi, Regarding Coreg and Toprol-XL, Coreg is still not available in my area and have started Toprol XL. Jon, you recommended going straight to target dose Toprol XL but I cannot figure out what that is! I couldn't tolerate the target dose of Coreg but find the 12.5 mg in the AM and 25 mg at night just fine. I was prescribed 100 mg of Toprol XL once a day. Is this the same dosage? I am not happy with this change in meds. I feel so good at the moment I hate to rock the boat! jackymwb@earthlink.net
 
Jon's note: That is close but a slight dose reduction. Toprol-XL is a once-a-day drug. There really is no "maximum" dose - the right thing to aim for is target dose. See chfpatients.com/faq/target_dose.htm.


MaryAnn H, February 11, 2006 - Hi Jon or anyone, Please help me with some questions. I wrote earlier about my father losing his appetite and wondering if his digoxin level had gone up again because this has happened before. Previously, when he was being discharged from the hospital with fluid in his lungs, they put him on Coreg. I told the doctor that I read in many places that coreg increased digoxin levels and he said that isn't true. Now my mother got the Coreg in the mail and it said do not take Coreg with digoxin. mahall1958@hotmail.com
 
Jon's note: His doctor doesn't know how to read and is dangerous - this information is in the standard Coreg prescribing pamphlet that patients get with the drug. Get him to see another doctor immediately and don't take full digoxin dose with Coreg. The fact that his dig levels are not routinely tested is enough to change doctors.


Jack H's February 11 reply to Chuck F's February 9, 2006 - Hi Chuck, Unless your ICD is placed lower than any I'm aware of, the transmitter belt used by all the monitor models should not interfere with your ICD. The belt is worn well below your ICD. Polar is the leading manufacturer of heart rate monitors with a wide variety of models. Most of the major sporting goods stores like Dick's and Sports Authority sell monitors. firstngoal@comcast.net


Marty M, February 11, 2006 - Hi Everyone, Well it looks like I may now need a biventricular pacemaker/ICD. Presently I have a St. Jude pacer/ICD unit but would appreciate hearing from anybody that does have a biventricular device or have some experience from friends, relatives, etc,..., with this type of device. Please e-mail me at Martyam@telus.net


K C, February 12, 2006 - Hello, I survived CHF two years ago with a diagnosis of dilated cardiomyopathy. I'm age 28 and hoping to leave the nest in a couple of years. I wanted to hear from people who have walked in my shoes about this question. Keep note there is no concern of relapse and in fact my doctor is impressed with my recovery. I do wonder about the stress of independent living and was wondering about other people's experiences. Has anyone just moved out of their parents' home with a chronic heart disease or just survived heart failure and living on their own? Is it still worth it or worth considering making a basement apartment (an open option in our family home)? I couldn't find a similar post in the archives to answer my question so here I am asking out of curiosity. chapmank@sympatico.ca


Chuck F's February 12 reply to Jack H's February 11, 2006 - Hi Jack, Thank you for the reply. The belt is not close to my ICD. The problem is apparently interference of some sort. I have tried three separate systems that use the belt and none of them would work on me, but they worked on my son. I contacted Timex, the maker of one of them and they said with some models of ICDs and pacemakers they would not work.
     The only thing I found that works is the MIO watch, but I need a system with an audible alarm to warn me of my heart rate going over 128. I have been shocked once already while exercising and getting my heart too fast and I don't want that again, more importantly I just don't want to strain my heart. chfrancis@adelphia.net
 
Jon's note: For you it sounds very important, since a fall on a treadmill can be awful. I assume your ICD is rate responsive - can it be reprogrammed to take exercise better? Will a thumb sensor type work?


Jerry B's February 12 reply to Peter S' February 11, 2006 - Hi Peter, The standard protocol is called the Bruce protocol. There are several others that we use that are less intense. It starts at 1.8 mph (miles per hour) at a 10% grade for 3 minutes, then 2.4 mph at a 12% grade. It continues up every 3 minutes and is open-ended, at least for what a regular person can do.
     Usually people start to notice that they are working at the 3rd stage and most people are done by about the 5th stage. I don't remember the rest of the stage numbers but the grade goes up 2% every time. You can probably Google search the web for "Bruce protocol" and get more info then you ever wanted. cpapq4@rainierconnect.com


Sandra S' February 12 reply to Paul W's February 9, 2006 - I am having the same problem .My SSA check has stopped. I'm in the middle of an appeal. I live by myself and I am having a hard time paying my bills. funnsun@bellsouth.net


David W's February 12 reply to Bobby M's February 11, 2006 - Hi Bobby, I can only speak about my expeience. I got viral CHF in August, 2000. My EF was 15% and I was in really bad shape. The docs did not think I would live a year. I have gotten much better. My EF is now about 35%. I am working part time and I never thought I would work again. I think Coreg really helped me. My doc said if Coreg helped, I would live longer. I also was morbidly obese and I had gastric bypass surgery in October of 2003. I have lost a lot of weight and that has really helped my heart.
     The docs says half my heart works while the other half has scar tissue. The part that works is working great. I can walk a mile and a half on a treadmill, lift a few weights, and do 10 minutes on the ski machine. I never thought I could exercise that much but I am. I am an old man of 54 so if you are only 37 things could get much better for you. We are all different though.
     I think you shoud do whatever you can to help yourself and realize it may take a long time to get better. I had the gastric bypass so I could qualify for a heart transplant. I now qualify but I am so much better I may never need a transplant. God got me through all this, I sure could not have done it on my own. I am doing more now than I ever dreamed of 5 years ago at my low point. wilsond537@aol.com


Darlene, February 12, 2006 - Hello Jon and fellow CHFers, Since my massive heart attack and severe congestive heart failure in 1998, I was put on Coreg starting at 6.25mg at 3 times a day and eventually increased to 5 times a day. I as well have been on 0.25mg of digoxin daily, and 4mg of Coumadin (as well as other meds). I have done exceptionally well since being on this drug and have been quite stable and able to lead a good life for my condition.
     Then in December of 2005, my Coreg was changed over to PMS-carvedilol (not a brand name) due to a shortage from the Coreg manufacuters or so I was told. I was given 12.5mg to be taken at 21mg twice daily, having to cut the pills in half to get the same daily dosage amount. Since then I have not been feeling my best. At first I thought I may need an increase on my Coreg once again, since I am not on full dosage and still have room to grow with it. However, then my monthly digoxin report came back too high, as well as my Coumadin levels. This was still going on in January, so my digoxin was decreased to 0.125mg at 1-1/2 pills daily, and Coumadin to 3mg.
      Then at 10:00 AM on February 2 of 2006, with an extreme increased heart rate, super hot and sweating, nauseau, and being exceptionally weak, with all symptoms decreasing and then quickly increasing, I was taken by ambulance to our town hospital. By afternoon, all vitals were good and I was taken up to the special care unit. That night, I went into CHF. During the time in the hospital, over 4 liters was drained from my body. I am now back home.
     All this time my digoxin and Coumadin were still increased. As of February 11th, the digoxin has been decreased again by 1/3 of the last dosage, and Coumadin still at 3 mg. Here is my concerns and thoughts:
     I do not know if the Coreg and PMS-carvedilol are comparable in quality, since my problems started at the same time of the change, which I believe caused the digoxin and Coumadin levels to increase. Second, and I am deeply concerned and unsure of cutting these pills in half, as when my doctor first put me on Coreg to get me started, it read in the medical book that it could not be cut in half to get the proper dosage needed. So a call was made to the PMS-carvedilol manufacturers and they said it could be cut in half. So why does the medical book say no and they say yes? Are the manufacturers not the ones that give the medical books the info? If it can be cut, then why is it in so many milligrams being 3.125 and 6.25 and 12.5 and 25mg?
     Do you know, Jon, if a shortage of Coreg is true? Who is the manufacturer? These questions and answers are important to me as the doctors here do not know what happened to me that morning I was taken to the hospital. I believe it was because of the changes and then that all sent me into CHF. The doctors are now sending me to the London Science Center in Ontario where I had been assessed in 1998 for a transplant. Thank you so much, Jon. I did not know who I could turn to, then I rememberd your site again, Jon. Thanks, Darlene. darwil@sentex.net


Jon's February 12 reply to Darlene's February 12, 2006 - Hi Darlene, Glaxo-Smith Kline is Coreg's brand-name manufacturer. You can have your doctor prescribe "scored" Coreg pills that are meant to be broken in half. The reason the pills come in all those sizes is money - each size usually costs the same so the company cleans up when docs prescribe smaller doses instead of scored larger doses to be broken by the patient. When I took smaller doses, I always broke my Coreg in half to take them to save money and never had a problem of any kind. I hoep it helps. Jon.


Tom S' February 14 reply to Jon's February 12, 2006 - Hi, The Veterans Administration apparently agrees with you Jon, because I have to split not only my unscored 25mg carvedilol (Coreg) but unscored 150mg irbesartan, and scored 80mg furosemide, and 5mg warfarin tablets every day - sometimes twice a day. So I sat down one day with a wonderful little pill splitter my wife found somewhere (it looks like this one found at www.dudleyhunt.co.uk/pillsplitter/default.asp, and split a whole mess of the pills beforehand and cleanly. It took some experimenting with the little device and I found easy does it when splitting meds. bigheart@muchomail.com
 
Jon's note: Better picture is on our site at chfpatients.com/pill_cutter.jpg. This is actually the one I use at home - bought at a local pharmacy.


Peter S' February 14 reply to Jerry B's February 12, 2006 - Hi Jerry, Many thanks for info on the treadmill testing stages. I also heard from Ian in Australia who passed on some web sites. One is exrx.net, an interesting site that deals with various exercise issues, including the treadmill stats I wanted, including the Bruce protocol that you mentioned. I am due for a test in a couple of weeks and am doing some preliminary training at my local gym since my normal exercise is lap swimming not treadmill aerobics. Good to know what one is in for. PeterSperl@cs.com


Candace M, February 14, 2006 - Hello, Has anyone out there been treated for CHF and actually improved? What medications have been prescribed that actually helped? Any info would be appreciated. Thanks, Candy. jhwyomingcs@hotmail.com
 
Jon's note: Have you started at chfpatients.com/start_here.htm for meds info?


Paul W's February 14 reply to Tom S' February 11, 2006 - Hi Tom, Thanks for replying. I posted a reply to Jon on February 3rd which should give you a little more information on my problem. Add a small stroke to that in the last two years and you basically have where I am at now. Basically, it started with a heart attack in August of 2003 with no problems after, then a major heart attack the next January. Sometime between the January incident and April of 2005 I had a stroke. Then came the passing out and the ICD in April of 2005. My wife had me apply for SSDI right away and I have been waiting ever since. Oh, my EF has been measured several times: August of 2003 at 54%, January of 2004 at 12%, June of 2004 at 33%, April of 2005 at 33% and July of 2005 at 25%. Take care, Paul. DWOLF@nc.rr.com


Scott B's February 14 reply to Darlene's February 12, 2006 - Hi Darlene, You sound like you are pretty experienced with your condition. I would not personally get too caught up on the theory that the generic Coreg is medicinally different than the brand name. I have been taking the generic for more than six months now without incident.
     The other thing that changed was how you take the pill. What made you start taking the pill 5 times a day? I assume this was because you had problems tolerating it? What if you started taking the generic 5 times a day? You would need to start splitting the halves into halves or just split the 12.5mg pills in half.
     Finally, since it appears you were taking on fluids, should your diuretics have been increased? I did not hear that part of the equation. Did you notice when you were weighing yourself regularly that you started to put on weight? This may have telegraphed the problem so that you could increase your diuretic before it got out of control. I hope everything stabilizes well again.
     PS. I have heard London (Ontario, Canada) no longer performs heart transplants (just follows up on existing ones). I think Hamilton and Toronto are the closest transplant locations although my information could be dated. kitchenerguy@rogers.com


Chuck F's February 14 reply to Jon's February 12, 2006 - Hi, Thanks for the reply. Yes, they have my ICD set with a lower high rate (it is set to record at 128 and to go off at 139 to prevent episodes of V-tach and SVT. Due to my past Dor procedure they don't want my rate up. They have actually increased it once already. Exercise is very important to me. Being in the Army for 15 years I was always very active with triathalons, ecochallenges, etc,..., and exercise has helped my self esteem and thus my depression.
     I have started up Karate again (no contact!) and am able to do five minute workouts and then take a break. The limits my cardiologist gave me was to keep my heart rate below 130 for another year and if my CHF and EF (now 26%, up from a low of 12%) continue to improve, he will raise the rates, hence why the monitor is so important. A thumb monitor would normally work but not with the karate.
     By the way, I highly recommend a martial arts for everyone out there. It doesn't have to be karate, try Tai Chi, yoga or any of the others. A good cardiologist will work with a Sensei or instructor to develop a routine for you. Thanks again. chfrancis@adelphia.net
 
Jon's note: Just remember that some breathing techniques that work well for healthy people can be less than beneficial to CHFers so beware extreme breathing techniques used in some disciplines.


Scott B's February 14 reply to K C's February 12, 2006 - Hi K C, I was 30 years old when I was diagnosed with CHF. If there is truly no chance of a relapse then I wonder why you are even asking this question? This is really a matter of personal choice, but my diagnosis was a milestone in my life. I decided to get married (I had been stalling for a long time), have kids, buy a house, buy a car. While all these things could create more stress, they also create a good reason to stay living.
     Since CHF tends to tire us, I believe it is pushing ourselves beyond our normal limits which makes us live longer. It would be so easy to spend an increasing amount of time in bed every day. Personally, there are realities about this. My wife and I make decisions keeping in mind I may not live a "full life" but hoping that I do. For example, we took a 10-year mortgage to get the stability of the good interest rates. I will never be able to get additional insurance (at a regular rate).
     K C, chances are you can always move home if you get too sick but you may not always have the opportunity to move out. I would suggest you live life to the fullest within the restrictions of your disease (or former disease). You need to decide if CHF is going to define who you are. Scott B. kitchenerguy@hotmail.com


Charles W, February 14, 2006 - Hi, I was diagnosed with CHF five years ago. I take an ACE inhibitor and a beta-blocker with generally no problems but for more than a year I have suffered from extreme fatigue, and I mean exreme. I really thought my heart was just weaker. Recent tests though, indicate that my heart has actually improved. Further tests identified the culprit as apnea, not exactly unknown for people with CHF. So I'm getting one of those masks (CPAP).
     My question is, Do they work? Some of those masks look like what our troops wore during the invasion of Iraq, others look like nothing more than those masks that drop down in your face on commercial airlines. Is any machine better than any other machine, particularly for a CHFer? Frankly, I'm cynical, but I'll try anything to get a good night's rest. I already take sleeping pills, which I hate. Thanks. Charles W. CClmbs3@AOL.COM


Judy R, February 14, 2006 - Hi All, I first wrote just about three weeks ago concerned about an ICD implant. On Februiary 7, I had a biventricular pacemaker/ICD implanted at Presbyterian Hospital in Philadelphia. I appreciated hearing from some of you about the procedure and it really calmed me down. Anyway, the procedure went well and all the staff at Presbyterian were great. I already notice that I'm much less tired and and not experiencing shortness of breath.
     It's interesting to read about Coreg and digoxin. I have been taking Coreg for five years now and am at 25mg twice a day. I had been taking digoxin until about three years ago when I read about a study saying that digoxin was beneficial for men but that it might increase risk of death in women. I talked to my cardiologist about that and was taken off the digoxin. At about the same time, I started taking CoQ10 with the blessing of my cardiologist.
     Today I had to renew my prescription for the Coreg and am waiting to see if there is going to be any problem with getting it. Thanks for this site. It really is a help. judyareed@aol.com


Giorg's February 15 reply to Chuck F's February 12, 2006 - Hi Chuck, About heart monitors that use a belt, I tried a couple (by Nike and Polar) and they did not work well at all with me, they were measuring a very low rate or losing connection. That happened both before and after my ICD implant. My cardiologist told me that it has something to do with my DCM. Indeed those monitors worked on everyone that I made try them, so it is me. It is my heart. I do not know whether it beats too weakly or has something to do with wave form of my rhythm.
     Luckily the heart rate monitor that I have connected to my stationary bike works better. It is applied on my ear but every time I have to struggle to find the right position, when others have no problem with that. If you find a good portable heart monitor for us, please let me know. giorgclunei@hotmail.com


Bill H's February 15 reply to Bobby M's February 11, 2006 - Hi Bobby, You are worrying over nothing, I know this because I wasted almost two years worrying about dying and and that brought my life to a stand still. I was afraid to do anything. The thing that I have figured out is that you will die when it's time for you to die. The how you die doesn't matter, the when is up to God. So just do what you have to and don't waste time worrying about something you cannot do anything about. bj5250@yahoo.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 Jon C.

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