The paperwork never ends The Archives
March 16-31, 2006 Archive Index

Bettye Y 3-16     which form of l-carnitine do you recommend?
Jack D's 3-16 reply to Steve B's 3-15     belly fat
Woody E 3-16     is serious depression common?
Scott B's 3-16 reply to Roger G's 3-15     diuretic use
Jon 3-18     conference suggestions
Jack D's 3-20 reply to Barb B's 3-15     diabetes, insulin, diet, and the heart
Maryann H's 3-20 reply to Bill M's 3-15     my dad's end-stage heart failure
Jon 3-20     being sick bites
Sandy N's 3-20 reply to Woody N's 3-16     life is worth living
Otis B 3-20     switching from Coreg to Toprol-XL
Debra S 3-20     stem cell therapy update
Peter S 3-20     seek some conference info
Jon's 3-20 reply to Peter S's 3-20     thank you for asking, I plain forgot
Debra S' 3-22 reply to Otis B's 3-20     getting Coreg
Barb N's 3-22 reply to Jack D's 3-20     insulin and diabetes
Otis B's 3-22 reply to Jon's 3-20     switching from Coreg to Toprol-XL
Sandy H 3-22     Coreg supply situation
Gene G 3-22     seek San Diego county CHF specialists
Roger G's 3-22 reply to Woodie's 3-16     live is worth living
Valerie R's 3-22 reply to Otis B's 3-20     Coreg versus Toprol-XL
Candace M 3-22     seek valve repair recovery experiences
Chris P 3-24     seek CHF doc in our area
Richard M's 3-24 reply to Debra S' 3-22     stem cell therapy
Deb E 3-24     caregiving has proven difficult
Holly 3-24     skewed electrolyte levels - questions
Cynthia G 3-24     intro
Debbie B's 3-24 reply to Candace M's 3-22     my mom's valve repair experience
Giorg 3-24     seek experiences with dronedarone
Bonnie K 3-24     seek experiences with CHF after pregnancy
Bobbie 3-24     seek experiences with CHF and kidney disease
Jack D's 3-24 reply to Barb N's 3-22     diabetic therapies, diets
Lowell P's 3-24 reply to Roger G's 3-22     God and illness
Tony M 3-24     seek info on sleep apnea and daytime breathing
Ann L's 3-25 reply to Bonnie K's 3-24     my experience
Jon 3-25     new therapies
Mary M 3-25     dronedarone experience
Hannah K 3-25     when should I be retested? and more
Jerry C 3-25     bad metformin experience
Valerie R's 3-25 reply to Giorg's 3-24     bad amiodarone experience
Ben B's 3-25 reply to Cynthia G's 3-24     some ideas
Debra S' 3-25 reply to Richard M's 3-24     stem cell trial therapies
Barb N's 3-25 reply to Tony M's 3-24     sleep apnea and daytime breathing
Richard M's 3-27 reply to Debra S' 3-25     stem cell trial therapies
Debra S' 3-27 reply to Valerie R's 3-25     experience after stopping amiodarone
Justin D 3-27     seek advice about my dad's doctor
Deb E 3-27     update on my dad
Sheila M's 3-27 reply to Bonnie K's 3-24     peripartum cardiomyopathy experience
Patrick H 3-27     would like to exchange information
Marilyn V 3-29     how bad is alcohol drinking for heart failure?
Tom S 3-29     how did the term CHFer come in to being?
Scott Brown's 3-29 reply to Debra S' 3-25     experimental therapies
Bud J 3-29     biventricular pacemaker seems to be working & more
Bonnie K 3-29     is foot pain part of CHF?
Jon 3-31     oops!
Debra S' 3-31 reply to Scott Brown's 3-29     trial confusion
Debra S 3-31     Bioheart study on hold
David Wilson 3-31     update on working with heart failure
Roger G's 3-31 reply to Marilyn V's 3-29     drinking alcohol and heart failure
Roger G's 3-31 reply to Bonnie K's 3-29     foot pain
Bill H's 3-31 reply to Bonnie K's 3-29     foot pain
Tom S' 3-31 reply to Bonnie K's 3-29     foot pain
Holly 3-31     checking out a stem cell study
Richard M's 3-31 reply to Jon's 3-25     stem cell therapy comment question
Jon's 3-31 reply to Richard M's 3-31 reply to Jon's 3-25     different therapies, stem cell or not
Hope M's 3-31 reply to Patrick H's 3-27     yes, for certain
Jim C 3-31     low sodium recipe site

Bettye Y, March 16, 2006 - Hi Jon, I hope you are feeling better. My questions is about the supplement l-carnitine. Which l-carnitine do you recommend - acetyl-l-carnitine or the plain l-carnitine? Thanks.
Jon's note: Regular if you get the prescription type called Carnitor, the acetyl if you buy over-the-counter.

Jack D's March 16 reply to Steve B's March 15, 2006 - Hi Steve, Possibly, but it definitely alters your tan line.

Woody E, March 16, 2006 - Hello all, I have been diagnosed with CHF for about two years now. Three months ago, one of my army of doctors added diabetes to my list of deadly ailments. I am on a strict diet and taking Metformin 500mg twice a day. In the last two months depression has really set in. Is this normal with the disease process or am I exceptional? I'm to the point that dying looks much more pleasant than living.

Scott B's March 16 reply to Roger G's March 15, 2006 - Hi Roger, You are correct about the maximum dose for Lasix being 600mg per day. Perhaps a daily dose of 200mg a day makes sense for the described situation. However, I still think it makes sense to take diuretics according to weight (fluid retention). Knowing that long-term diuretic use can cause problems like kidney failure, it is in our best interest to only use as much diuretic as necessary. The original post mentioned symptoms which were consistent with dehydration, leading me to the suggestion that duiretic use should be reviewed. I hope this clarifies my intent. Thanks, Scott Brown.

Jon, March 18, 2006 - Hi everybody, Thank you all for your suggestions and ideas on my conference presentation. The messages I received were so good that I have altered the format of my presentation and 80% of it will come from you, our readers. Please continue to send your thoughts on any message you want cardiologists to hear to Please remember that I am not answering any of these messages but I am reading every single one. Thank you again - I am impressed with the raw intelligence, education, observational skills, and common sense of my readers more than ever. Great stuff! No joke. Jon.

Jack D's March 20 reply to Barb N's March 15, 2006 - Hi, Most adults who are being harrassed by diabetes for the first time in their life have type 2 diabetes and the medical community just can't seem to get it through their thick skulls that type 2 means insulin resistance. So they do extremely stupid things like flooding your system, which is currently awash with more insulin than it needs, with even more insulin using some faulty logic that if you are resistant then maybe you will work better if you are forced to have more insulin. You don't need more insulin!
     High levels of insulin are dangerous. I was recently hospitalized and the policy of this brain-dead institution was that all diabetics are taken off their diabetic meds and put on insulin. Then they are put on a stupid diet that includes fruits and carbs and sugar-loaded juices. I kept my meds. I went against medical advice and ate my own diet and the dimwits were amazed that my blood sugar was so good. Well, what could they expect? Their policy was written by morons.
     Back to insulin. You have to keep its levels low and the only way you are going to do that is to take meds that do not stimulate the production of insulin, you don't "take" insulin and you rid your diet of everything that either is sugar or is converted to sugar. Flooding your system with insulin is just as bad as flooding your system with sugar or alcohol. If you have diabetes you will get heart disease from the extra insulin in your system. The heart patients who are already here are pretty much in danger of diabetes especially since the diets recommended for heart problems are loaded with sugar!
Jon's note: Are those the low-fat diets? I've never really looked at any of them, not believing in low fat intake myself.

Maryann H's March 20 reply to Bill M's March 15, 2006 - Hi Bill, My father was brought to the hospital last Wednesday for low blood pressure and has end-stage heart failure. They are sending him home today with milrinone. They put a pic line in and the family will be trained on how to change the cartridges today. It has helped him very little. They were hoping it would improve things but it hasn't much. They are giving him maybe 2 to 3 months. His CHF symptons aren't that bad but his kidneys are giving out. Any other info I can provide that you would like to know, let me know.

Jon, March 20, 2006 - Hi everyone, Sorry for the huge delay in posts again but I'm one sick puppy. So it goes. Should hear the CT scan results today. Jon.

Sandy N's March 20 reply to Woody E's March 16, 2006 - Hi Woodie, Please don't ever think that dying is much better than being alive and sick. So many people here and around the world are working like crazy to keep themselves alive. I too have CHF and am now taking an antidepressant for my depression. I too was told I'm on the verge of diabetes, if I don't get my blood levels and sugar down. I'm 58 years old and although my children have grown and moved away, I still have things to do, and no doctor is going to tell me I dont have much time left! That will happen on the day that was marked for each of us, if not by CHF, then by a truck while crossing the street, or whatever. We just don't know!
     So rather than waiting for the end or trying to get there sooner, make up your mind that life can have wonderful moments. As you well know, God does not give us anything more than we can handle. You did not say your age or your life's circumstances but if you have a family and are young at heart, then you have much to be thankful for and need to stay in this life for them too!
     Any life threatening disease is a lot to handle but as you know, there are days when you can look into the eyes of a child or romp with your dog and laugh. I pray you can find the strength to carry on and keep yourself thinking good things. I work in my garden a lot watching things grow, and finding baby turtles under the soil in my yard is enough to make life worth living. I'll say a prayer for your continued good thoughts because you're worth each and every day that God has given you. Best of luck.

Otis B, March 20, 2006 - Hi, Has anyone changed from Coreg to Toprol-XL? What is the correct way to change these drugs? I have been on 12.5 mg twice daily for 7 years. I received a letter from the VA pharmacy that Coreg is not available from the manufacturer at this time, so I am being changed to 50mg of Toprol-XL once daily. Any info would be appreciated. Thanks in advance.
Jon's note: If your weight is under 190 lbs, this is an appropriate dose. You should switch from Coreg dose to an equivalent dose of Toprol-XL. I went from 50mg Coreg twice a day straight to 200mg Toprol-XL once a day.

Debra S, March 20, 2006 - Hello, I just got back from Cleveland Clinic. I was told that the stem cells are not shown to work yet. They think that the people who have gotten better would have anyway. It could also be the medications making them better or a placebo effect. How sad, but it looks like Jon has been right to have his doubts. The doctor I see there is head of heart failure and transplant medications. I feel that he is very knowledgable. He seemed upset as he had hopes as of last October, that I could be in the study.
     There is always the future. He also explained to me that they do not know why people with 15% EF can do better than people with 50% EF.

Peter S, March 20, 2006 - Hi Jon, I am sure all of us join me in hoping that your health has improved enough to permit you to participate in the mid-March Conference you have brought to our attention several times. We look forward to a report or to a site where there may be a transcript or summary of the issues raised. You have a great deal of credibility in the world of CHF - in fact my first attention to your web site was at the recommendation of Dr. Silver in his great book on heart failure published I believe in 2002 or 2003.

Jon's March 20 reply to Peter S' March 20, 2006 - Hi Peter, I'm going unless I'm hospitalized. It just plain escaped my attention that I had not posted further information about the conference itself. The meeting will be held in the St. Regis Hotel in Washington, DC during April 17 and 18. The title is "Ethical Issues in Care for Persons with Advanced Heart Failure." My presentation is simply titled, "The Patient Perspective" which will give me a lot of wiggle room in what I present and will be given during the session, "What Information Should Heart Failure Patients Receive?" Let me know if you want more information. Jon.

Debra S' March 22 reply to Otis B's March 20, 2006 - Hi Otis, You can call GlaxoSmithKline at 888-825-5249 and they will tell you how to get the Coreg. It is available.

Barb N's March 22 reply to Jack D's March 20, 2006 - Hi Jack, Regarding insulin, many Type 2 diabetics eventually have pancreatic beta cell burn out along the way and have to take insulin to survive (even if previously compliant with their treatment regimens). You are quite correct that if you are insulin resistant, going on a very low carb diet is probably the best therapy to avoid full blown Type 2 diabetes or to treat its early stages. However one still has to have functioning beta cells in the pancreas to avoid insulin entirely. So the diet regimen works better when the diabetes is discovered early in the course of the disease, still not true for about 50 percent of Americans with Type 2, who don't find out they have diabetes until organ system damage is quite advanced. Some of the revised screening criteria should help, as should new treatment options like metformin and byetta, which don't rely on overstimulating the pancreas like the sulfonylureas do.

Otis B's March 22 reply to Jon's March 20, 2006 - Hi Jon, Thanks for your reply. If I may ask, did you step down with the Coreg and step up with the Toprol-XL. My weight is 210. Thanks so much.
Jon's note: I went straight from target dose for my weight of Coreg to target dose for my weight of Toprol-XL so that my body's beta-blockade would change as little as possible. For people over 190 lbs, preferred dose is usually 50mg twice a day of Coreg and 200mg once a day of Toprol-XL.

Sandy H, March 22, 2006 - Hi, I just received a three month supply of Coreg from my mail in pharmacy. I received a letter about a month ago and told me I would have to change so maybe they have a supply again.
Jon's note: FDA says any pharmacist can call the manufacturer at 1-800-877-1158 to get a supply until the shortage is completely over.

Gene G, March 22, 2006 - Hello, I would appreciate it if you could e-mail me the names of the top 2 or 3 CHF specialists in the San Diego county area. Thanks, Gene.

Roger G's March 22 reply to Woodie's March 16, 2006 - Hi Woodie, Whatever you do, don't give up! Always look on the positive side of things! After the triple bypass I had in 1989, I told my wife never again, that I'll die first before I go through that again. Well in 2001 after a couple of heart attacks, the surgeon said we need to do a double bypass this time and automatically I said let's go for it.
     I got diabetes in 1999 and now with the last surgery have CHF. However God doesn't give us more than we can handle and I have found out just how valuable life really is. My doctors love me as a patient cause I am running a very tight ship as far as the diabetes - no meds and running around 100. I only have to take Lasix for the draining of fluids about every other month. This is with the help of my 300mg sodium intake limit per day. I live every day to the fullest and even if I run into trouble, I know I'm not alone.

Valerie R's March 22 reply to Otis B's March 20, 2006 - Hi, I had terrible problems with Coreg so was switched to Toprol-XL with no problem at all except I felt better.

Candace M, March 22, 2006 - Hi, Has anyone with CHF had valve replacement surgery? My dad had has aortic valve replaced about a week and a half ago. This valve problem was causing him to have severe heart failure. The surgeon and cardiologist said that his heart will and has gotten stronger since the repair. He is extremely weak right now and he begins cardiac rehab therapy tomorrow. Has anyone had any experience with this? Does it get better? Thanks, Candace.

Chris P, March 24, 2006 - Hello, I am doing research for my dad's care and I appreciate any help that this board can give. My dad was diagnosed with advanced prostate cancer at the age of 53. Radiation therapy for a recurrence years later may be the reason for his heart failure that he has experienced the last two years. He had a defibrillator put in last April and it went off three times in the course of a few minutes this week. He is currently getting care at Stony Brook University Hospital. His cardiologist is at St. Frances, also in Long Island.
     I did not even know that there were heart failure specialists and we are looking for a recommendation for a bright personable specialist who can put my dad on a sensible plan, if building strength in his heart is even a possibility. His heart is weak at that the moment (20 percent) and he is routinely catching pneumonia because he cannot clear the fluid in his lungs. Thank you, Chris.

Richard M's March 24 reply to Debra S' March 22, 2006 - Hi Richard, Cleveland Clinic has entered into a patent licensing agreement with Bioheart, Inc., to further develop Bioheart's cell-based technology on February 20, 2006. How they can tell you that they think people would have gotten better anyway without running any big trials themselves is hard to understand.
     Did they tell you what kind of stem cells they where talking about? The future of adult stems cells is looking very promising but it is still aways before its fact. You also say, Jon has been right to have his doubts. I do not believe Jon thinks it will not work, he just wants proof. What he was referring to was a whole different thing.
     Also, are you sad of what you were told about stem cells or are you sad about not getting into the trials? If it's about what you where told about stem cells, do not be sad. There is no proof that they do not work nor is there any clear proof that they do.
Jon's note: Many trials are not using true "stem cells" or they are combining multiple therapies in the same trial so who knows which therapy is really doing the improvement. Richard is right - adult stem cell therapies of several types have promise which just hasn't been proved yet. Others have, I think, been discredited, or are seeming unlikely to help.

Deb E, March 24, 2006 - Hi, I am a caregiver for my dad, Ron, who was diagnosed with CHF a week ago. His unhealthy diet, high in sodium, was causing fluid retention and putting pressure on his heart. He also was diagnosed with type 2 diabetes on top of the COPD he was diagnosed with in 1993. To add to the fun, Dad has been having bouts of vertigo.
I've taken him to the emergency room twice, both times his vitals were normal and the dizziness passed after a couple of hours. He now has a prescription for anti-vertigo meds. I feel like a fool rushing him to the hospital only to turn around and find out everything is okay and the dizziness is not related to his other conditions, but with his multiple problems I worry. I've begun supervising my dad's diet and with that and his meds (Lasix, glucophage, cardizem) I'm seeing results that show he's losing the spare tire around his middle.
     Today, we have a consult with his doctor about what's been going on and possible cholesterol meds he might want Dad to take. I'm just feeling overwhelmed. I'm an only child, my mom passed away in 2002, so I'm pretty much on my own here. I hope you all don't mind if I drop by and vent sometimes. Thanks.

Holly, March 24, 2006 - Hi Jon, I hope you are feeling better. I have a question about some electrolyte levels that I'm not sure what they mean and if I should be concerned. I've been feeling really tired the past few days, sleeping 20 out of 24 hours. I had some blood work to check my potassium level as I seem to have a hard time maintaining a good level with the amount of diuretics I'm on. I take 60mg Demadex one day and 80mg the next day, alternating back and forth. Anything lower and I start to retain fluid even on 1800 ml/day fluid intake and low salt diet. I also take 60mg of potassium a day.
     My potassium level last Thursday was down to 2.9 but has come back up to 3.6 but now my chloride is low(not sure of the number) and my Co2 is high at 38. I have a call into my doc and I have an appointment with him Friday. This is something new for me and I was wondering if you had heard of this. You are such a wealth of information that I value your input. Thanks and I really hope you are getting better. Holly.
Jon's note: Hi Holly, When you have multiple blood component levels going off in different directions, it's time to really talk it out with your doc. It's just about impossible for me to draw conclusions long-distance on something like this. I am sorry.

Cynthia G, March 24, 2006 - Hi everyone, I am new to this site but I have had CHF for 10 years now and just last year had to quit working. My cardiologist says my heart is too weak for two-way bypass but not bad enough to be transplanted. What can I do? I am running on borrowed time. I am 46 years old and it is my goal to see my grandchildren. Thank you.

Debbie B's March 24 reply to Candace M's March 22, 2006 - Hi Candace! My mom had mitral valve replacement at age 64 last year. It was so bad she has CHF. After surgery she was very weak, out of breath, the whole deal. She is on Coreg, an ACE inhibitor and Lasix, and she is doing much better. I'm not sure what her EF currently is, was at 25% several months ago. She is definitely breathing better and keeping fluid off. Best wishes for a continued recovery for your dad! Debbie.

Giorg, March 24, 2006 - Hi everyone, There is a new anti-arrhythmic drug around called dronedarone for whom of us (like me) who can not tolerate amiodarone. Some clinical trials are running around the world. Is anyone involved in some of them? If that medication worked without the side effects of Cordarone (as it seems from the current evidence), would be really great for us with ICD and V-tach and atrial fibrillation.
Jon's note: The manufacturer is seeking approval for this as a treatment for atrial fibrillation. Search on ANDROMEDA, DAFNE, ADONIS, and EURIDIS trials. While it does help, it disappointed many hopeful researchers.

Bonnie K, March 24, 2006 - Hi, I have CHF and I am only 29 years old. I just had a baby in January and was diagnosed with CHF and cardiomyopathy. I am currently taking many meds. Is this normal or will this go away. What triggered this? Please help me try to understand this. Thank you, Bonnie.

Bobbie, March 24, 2006 - Hi, I discovered this site a week ago and have learned a lot. Thank you Jon for all your hard work you've obviously put into this! My hubby was diagnosed with CHF last week and during an angiogram. We were told he's had two heart attacks. He's on 5 new medications now and still has chest pains that come and go.
     The problem is that he's also a dialysis patient. From what I've learned, the ESRD (end stage renal disease) can cause CHF and visa-versa. We're seeing his cardiologist today for the first time and I've got lots of questions to ask. Since the CHF diagnosis, my husband is so tired all the time and is sleeping a lot more. I'm really worried about him, he seems to be fading. I'm really watching his diet - the renal diet was a challenge to learn but the CHF was easy, we've already been watching his sodium.
     Has anyone known someone with these same circumstances? I would appreciate any advice on boosting his energy. He loves fishing and hasn't even had the urge to do that. I'm feeling a little helpless here! Bobbi.

Jack D's March 24 reply to Barb N's March 22, 2006 - Hi Barb, Byetta is the best bet type 2 diabetics have because it stimulates the growth of new beta cells. You may know that it is derived from Gila Monster spit and the reason it was looked at to begin with is the fact that the gila monster only eats every three or four months and during between-meal times its pancreas shuts down. A protein in the saliva starts the pancreas back up when the gila monster starts eating again.
     It works the same on humans. It mimics GLP-1, which causes the pancreas to produce insulin only when the blood sugar goes up. The growth of new beta cells was an added effect that they didn't know about to begin with. It also decreases the insulin resistance.
     Jon, the hospital heart diet is ultra low fat, low sodium and loaded with food additives like starch and sugars. Of course, the low sodium is bogus because they load you up on bread.
Jon's note: I kind of figured they'd use all the wrong stuff to replace the salt flavor. Personally, I think ultra-low fat diets should be used by very, very few carefully selected patients.

Lowell P's March 24 reply to Roger G's March 22, 2006 - Hi Roger, I think God doesn't give us any of these problems. Atheists as well as good Christians get the same problems. I don't believe God tests us. He just wants us to love each other.

Tony M, March 24, 2006 - Hi, I have had cardiomyopathy problems since 2001 and recently discovered I had a lung issue and have low oxygen levels of 88 to 90 with high carbon dioxide levels of 56 while being checked out in Pittsburgh for a stem cell study. It was missed and now I am waiting for a sleep study because the pulmonary doctor at the University of Alabama at Birmingham where I have been treated for my heart disease ordered one when I got back from Pittsburgh. They also missed the lung issue but that's another story.
     I found this lung thing in the last week of January and when I went to get this sleep study done, the list is so long here for the sleep study it will be April 27th before I can get in for a sleep study. It must be an epidemic because my general PCP doc tried to get me in one here in Montgomery where I live and the local hospitals are booked up here also. So I am in a state of suspense waiting for all this to take place because they also found a small spot on one of my lungs at Pittsburgh and they took pictures of it and for now the pulmonary doctor has me on hold while I wait for a sleep study.
     I read all the time about sleep apnea and I am pretty sure I have it. In fact, my dentist went ahead and made me a mouth device that holds my tongue down and allows my airway to stay clear when I go to sleep. My wife is a dental hygienist. I have been using the device for a week now and I feel a little more energetic than before but I am still not ready to go to Disney World yet.
     I had a viral infection and I was sick with a lingering cold for a few months back in 2000 and by the end of that year I was diagnosed with cardiomyopathy caused by a virus and now they are sure my lungs also took a hit and it was missed because low oxygen levels mimic heart disease(shortness of breath). It's unbelievable how much of your time being sick causes you to wait for appointments to roll around to see all these different specialty doctors.
     What I don't know is how does sleep apnea have an effect on your breathing while you're awake? Even my general doc doesn't know or understand how sleep apnea could cause me to have bad oxygen levels during the daytime. Anyone who is knowledgeable about this I would appreciate your input on this. Thanks and good health to you all. Tony.

Ann L's March 25 reply to Bonnie K's March 24, 2006 - Hi Bonnie, Cardiomyopathy is such a huge blow after delivering a healthy child. I have it after undergoing chemotherapy. There are not huge numbers of people who fit these profiles but they do exist. Keep trying to connect with someone who fits your pattern. I remember I felt wonderful when someone named Stan from Indiana replied to me. It helped me to feel more normal as he had a can-do-attitude and loved to dance and ride a motorcycle. So just as he could help me I hope there is someone who responds to you.
     What is your EF? Yes, meds are very necessary and they make you feel especially lethargic in the early months but things will improve in this department. In fact, your EF will probably improve but the cardiomyopathy will remain the underlying diagnosis.
     Regular exercise helped me enormously in the beginning. I just took baby steps and really pushed myself to increase the level. The 2000mg sodium limit helps much. And do get a very good and attentive cardiologist. Mine sees me every three months. It's unclear to me why, but he is obviously monitoring a serious situation and is helped by talking and getting an impression. At times he tweaks things and I always come away feeling good.
     Let us know about the baby. How is she or he doing? Your first? It must be so difficult taking care of yourself and an infant. Do you have stairs?

Jon, March 25, 2006 - Hi everyone, Because I don't report a new and seemingly "big" development in heart failure therapy doesn't mean I'm not aware of it. <g> One such example is CHFsolution's "ultrafiltration" device for removing fluid without drugs while you're in the hospital. I have serious reservations about the invasiveness, cost, practicality, and other factors involved in this therapy, which I would be happy to discuss with anyone who wondered why this has not been mentioned on site. I have been tracking the experimental therapy for years, but am not convinced right now that it is any better than the old-fashioned methods. Jon.

Mary M, March 25, 2006 - Hi, Bob is enrolled in the dronedarone study, after stopping amiodarone 6 months ago, his ICD decided to fire three times in one week. He started dronedarone on March 6th and since day 3 of taking the drug he has had zero instances of V-fib or V-tach. His ICD is interrogated on a three week basis. So far we are very happy with dronedarone, which has caused no noticeable side effects and no shocking experiences. His doctor has been involved with Senofi Aventis for awhile and every patient of hers that got the drug and not the placebo has done amazingly well. We pray Bob's luck continues. Mary.

Hannah K, March 25, 2006 - Hello everyone, Thank you for listening and replying if you would like to. I hope you're well. My last echo was in June, the date of my diagnosis. I have mild right-sided heart failure. When I brought up increasing SOB and episodes of a fast heart rate (recorded by Holter at 140 beats per minute), my cardiologist seemed to shirk it off, saying, "It's a roller coaster, but not cancer, a heart attack or stroke." He asked me if I was still exercising. I said yes, but thought no, not aerobics, only walking and light yoga, which is a change in life style from my running days. He also didn't think that limiting my diet or alcohol was important. I can testify that when I eat a large meal with alcohol, I wake up sweating with a fast heart rate and chest pain.
     I don't get it. No, I'm not severely ill, but I feel different; my heart speeds up more than normal and I've been wheezing since January. I'm taking Inspra and prednisone, in addition to lisinopril, Pravachol and Foltx. I tried to start a beta-blocker but had a severe reaction that sent me to the emergency room.
     I asked my cardio when I'll be tested again, and he said December. Am I being too anxious to ask for another echo this soon?What is the standard for retesting if you're not feeling dramatically worse, only subtly? Any advice on how to encourage your cardio to retest? I live in a remote area with no CHF docs. Thanks and blessings, HK.

Jerry C, March 25, 2006 - Hello, Concerning metformin, the medicine is a dangerous drug. I was put on it for type 2 diabetes and within a few days I was suffering severe muscle pain, very weak, and extreme shortness of breath. On my own I stopped taking it and within two days was feeling better.

Valerie R's March 25 reply to Giorg's March 24, 2006 - Hi, It's so nice to know they are working an an alternative to Cordarone or amiodarone! First, my thyroid stopped working, giving me a weight gain I have yet to lose and hypothyroid. Now, I seem to have a "string" in my vision. It's hard to describe. I keep being tempted to say, "I see dead people" like in the Bruce Willis movie. Anyway, my cardio has now taken me off amiodarone but said I will have to go back on if I get a-fib again.

Ben B's March 25 reply to Cynthia G's March 24, 2006 - Hi, I would at least ask for a second opinion. What type of blockages are in your arteries? Is it too widespread to do stents? Is the doctor who said this the same one who would perform the bypass? Is the doctor planning to wait for your heart to get stronger? Is there any plan? You might consider EECP if there is no other alternative, plus I read that Crestor may reduce blockages a little bit in some people, although probably not enough. Good luck.

Debra S' March 25 reply to Richard M's March 24, 2006 - Hi Richard, I tried to answer last night. It said the web site was not working. I hope it is now. The typed word can really be misunderstood. What I meant is that Jon doesn't know one way or other, as of yet, about the stem cells. The doctors at Mayo, Hopkins, Penn, Dallas, etc,..., aren't sure yet. I could get into the Cleveland trial, but my doctor there wants me to wait.
     Am I sad? No. Actually I am relieved. I would have liked to get off the Coreg though. My latest tests show that my right ventricle has returned to normal. The LV is still bad with an EF of 15%. That is where the major hit was in 1989, when I had a massive heart attack. I no longer need a transplant. My doctor had just returned from Atlanta from the big AHA meeting. That is where he got his info. Thank you for your reply. Debra.

Barb N's March 25 reply to Tony M's March 24, 2006 - Hi Tony, Regarding sleep apnea and daytime breathing issues. My impression is that this is not an area that is well researched. Central sleep apnea is related to Cheyne-Stokes or periodic breathing, which is seen sometimes with fairly severe CHF. My understanding is this happens when the body fails to respond and compensate for increasing levels of carbon dioxide in the blood. Usually people will sigh or yawn when their oxygen levels drop and thus take in more oxygen but with Cheyne-Stokes the breathing just gets slower for a while and then starts up very rapidly and then the pattern repeats. CPAP (or BiPAP, which gives less resistance on exhalation) may help central sleep apnea some or supplemental oxygen may also be needed.
     This is different than obstructive sleep apnea, which is typically but not always seen in people who carry extra weight and have large neck diameters, or have narrow airways either naturally or from trauma (happens sometimes post-surgery from intubation and may result in trouble getting off a respirator). CPAP definitely helps obstructive apnea. I think obstructive apnea can also occur when there is a lot of edema, especially with right heart failure, when the veins in the neck become engorged and put pressure on the larynx and trachea, as well as increased pressure from the fluid in the lungs making breathing harder. This would likely be noticeable in the daytime or on physical exertion also.
     Really complicating the lung-heart picture is any type of COPD or asthma, which can be exacerbated by beta-blockers used to treat CHF. Spiriva, which is a relatively new med for COPD may give some relief and seems to stress heart function less than some of the alternative meds.
     It's just a very complicated picture and there is little in the medical literature I've reviewed about the best treatments for a combined condition. My hunch is that breathing difficulties during the day would be more likely to be related to central apnea or COPD, although combined apnea types can occur. Make sure the doctor evaluating your sleep study results is aware of your CHF and that you do not carry a lot of extra fluid weight into the sleep study, or take diuretics immediately before the study, for obvious reasons. Don't give up though, and if you get a CPAP or Bipap stick with it!

Richard M's March 27 reply to Debra S' March 25, 2006 - Hi Debra, I have reread your two posts and now see what your doctor is telling you. He may be talking about G-CSF injections. There is a big diffirence between G-CSF injections and adult stem cells injections. You cannot clump all stem cell research into one bucket. There are just too many kinds of cell research. Your doctor was right as far as G-CSF injections being in a report at the AHA meeting. Can you tell me what kind of Cleveland trial you were going to try? Richard.

Debra S' March 27 reply to Valerie R's March 25, 2006 - Hi, I was taken off amiodarone about a year ago. It took almost a year, but everything returned to normal. I was also told I might have to go back on it if I had a recurrence of symptoms but so far, so good. Even my thyroid is completely normal again. Good luck to you. Debra.

Justin D, March 27, 2006 - Hello, My father is a CHFer. Having moved to a new area, his new doctor didn't request his 3-year CHF history. He took one EF reading and diagnosed my father as end-class. I disagree since his drugs have taken him from an EF of 18% to 60% over 3 years and perhaps just had a bad EF day. He is also a very anxious man. The new doctor has put him on Perhexaline which is causing side-effects from nausea to moderate weight loss. This new doctor specialises in diabetics. I'm worried in the downturn all this has caused. Any advice would be hugely appreciated.

Deb E, March 27, 2006 - Hi, I'm sorry I didn't update my last post, but my dad had his consultation with his regular doctor, and everything went okay. The doctor lowered Dad's dose of Lasix to once a day and changed his heart medication to lisinopril. I have no idea what to do with the month's worth of Captopril I bought for him. The good news is that the vertigo seems to have gone away with the med change.
     It is so terrifying when he gets one of these spells. I'm told it feels like a merry-go-round that spins out of control. Happily, he's been okay, so I'm keeping my fingers crossed he'll continue to do well. He's in good spirits and seems to actually enjoy his new diet. At his appointment, he'd lost seven pounds since his last visit in December, but he'd really been stuffing himself between then and his hospitalization, so I have a feeling he's lost quite a bit more in both fluid and body fat. So far so good.

Sheila M's March 27 reply to Bonnie K's March 24, 2006 - Hi Bonnie, I have also been diagnosed with peripartum cardiomyopathy, last June after the birth of my second child. It has been quit a roller coaster. I feel great I'm finally down to one med, which is Coreg at 25mg twice a day. My EF is 25%, which I understand is not that great but I feel good.
     In February because my EF had not gone up (yet) my doctor recommended an implant of an ICD. Two months later I can hardly tell that I have one. I have not had to use it but if I ever need it, it will be there for me. I hope you are feeling better! I don't know if I can answer any question that you may have. It just may help you, knowing that you have a friend out here that is going through the same thing. Take care, Sheila.
     PS. Jon, thanks!! Good health and happiness to all.

Patrick H, March 27, 2006 - Hi, I am a 60 year old male, relatively active (golf mostly and in the yard) was diagnosed with CHF in November of 2005. When my internist said the words "heart failure" I almost passed out from the association of heart failure and life style. He went on the say that mine was a very, very mild case. Since then I've had EKGs, cchocardiograms (ejection fraction of 48%) and nuclear stress tests (ejection fraction of 58%). The cardiologist tells me I have no significant blockages and that the EF on the echo is much less reliable than the EF on the stress test.
     Does any of this sound familiar? Am I being led down the primrose path? I feel okay but have high blood pressure (taking Diovan) and the cardiologist has me on 6.25mg of Coreg twice each day. Both my internist and my cardiologist tell me I should live to see my grandchildren grown. Everyone here seems to be so knowledgeable and my question is: Is there such a thing as "mild CHF" that is survivable over a long period of time, say 15 to 20 years?
     I would love to hear from anyone on this subject. I'm just rolling along doing what the doctors tell me to do - nothing more, nothing less. I occasionally get a little blue over this, but it doesn't last long. I've always been a fun-loving and happy person. I still work full-time and love my job and plan to work until at least I'm 70. I would love to share stories with anyone.

Marilyn V, March 29, 2006 - Hello, My husband has CHF and is in the end stages. He drinks quite a bit. How bad is this for CHF? I will call him an alcoholic.

Tom S, March 29, 2006 - Hi, When did the acronym CHF turn into a noun as in CHFer?
Jon's note: Years ago, when Jon got tired of typing the phrase " heart failure patient." Seriously. Many people in the medical community also say this site coined the acronym DCM.

Scott Brown's March 29 reply to Debra S' March 25, 2006 - Hi Debra, I am confused about your post. It seems that your March 20th post is saying doctors believe the patients who get better would have recovered anyway. Now, it sounds like you are saying they (doctors) don't know yet. Can you tell us exactly what your know about the study which is currently under way?
     This type of therapy is especially attractive to this people on this web site. It is important to share the facts as clearly as we know them. The theravitae site makes the procedure sound like an absolute miracle, and and they are completely brazen about contacting all media outlets.
     On the other hand I am skeptical. One ethical issue here is the fact these procedures are being done in the Phillipines or Thailand because they have very little regulation over this type of operation. The lab work is done in Israel but they do the actual injections in other countries. There is a definite lack of regulation.
     Our problem is that as CHFers we all have the feeling that our time might be limited on this earth so we are less willing to wait for the amount of time proper medical trials take. All the best. Scott B.
Jon's note: Theravitae's procedure is not - in my opinion - actual stem cell therapy.

Bud J, March 29, 2006 - Hi, It has been 8 weeks since I had my BiVentricular implant and I am feeling quite well, especially with my breathing. I am able to do most things that I did before CHF with modification, of course. When I had my heart attack in September of 2005 I had a prior EF of over 50 and had in-depth physicals every year. The heart attack happened at my summer home in the Pocono Mountains and caused me no pain or physical distress, just some sweating and a slight tightness in the chest. I arrived at the hospital in a little more than an hour by ambulance and after testing it was revealed that my mitral valve leakage would have to be repaired in addition to a double bypass.
     Somehow I wound up on a ventilator for five days and spent 10 days in ICU. The hospital cardiologist told me that I would be okay in six months and what I needed was exercise. I could not walk more than 10 feet without almost passing out from lack of breathing. My body was very weak from my time on the ventilator and loss of muscle structure. After a month in the hospital I caught a flight back to my Florida home and visited my regular cardiologist almost immediately. Within a week of testing I was diagnosed with class 4 heart failure and a biventricular pacemaker was recommended.
     I have many challenges ahead but I feel quite well right now. I am also on a starting dose of Coreg for the past six weeks at 3.5mg and Diovan at 40mg and Desenex at 40mg. I have all the records from the Pocono hospital and doctors, and I have read them and passed them on to my oldest son and nephew for review. A misdiagnosis if there ever was one.
     Surprisingly I have not been depressed nor even down during this time. Maybe it's my years as a Navy pilot with 126 combat missions over Vietnam or most likely because of my wonderful caring wife. I am 70 and have always led an active and healthy life style. Good luck to you Jon, and I am very happy I found this web site a few weeks ago. I sent a check in last week and I hope others will also, as this is a great web site.

Bonnie K, March 29, 2006 - Hello, My mother had a heart attack 15 years ago and was diagnosed with CHF shortly after that. She is currently suffering another episode of terrible foot pain that makes it nearly impossible for her to walk. She thinks the pain might be related to her heart condition but she is refusing to see a doctor. I'm wondering if her foot pain could be a symptom of CHF? Thanks, Bonnie.

Jon, March 31, 2006 - Hi everyone, Well, I finished writing my presentation for the medical conference and discovered that I have to cut 60% of it to fit time constraints, so I'll still be very short on time for the next couple of weeks. I'll do the best I can. Jon.

Debra S' March 31 reply to Scott Brown's March 29, 2006 - Hi Scott, Sorry I confused you. I did not name one certain trial. The trial they are doing in Cleveland is the Bioheart trial. My second reply was an answer to Richard. My first post was more than the patients would have recovered anyway. I said nothing about TheraVitae. I think I am confused now. Anyway, a doctor here that was at the AHA meeting in Atlanta, said that it will be at least two to three years before stem cells will be used. Right now, it is experimental.

Debra S, March 31, 2006 - Hello, I just spoke to Cleveland Clinic staff. I was told the Bioheart trials are on hold. The FDA would not give approval. Unbelievable that Germany, Israel, Switzerland and other countries can do testing and we can't. I know that we are careful, but how careful? I am not talking about questionable studies such as the ones Scott mentioned. This is all so frustrating.

David Wilson, March 31, 2006 - Hello all, I started a new job a few weeks ago and I guess it was too much. I had to work a 40 hour week and drive 35 miles one way. I did oksy the first week, fair the second week, not so good on the third week, and this week my body rebelled and I had to quit. I just can't do 40 hours and drive very far.
     When I feel good I think I can do just like everyone else and I try so hard but I am not like everyone else. I wish I knew how much I could do without doing too much. Well, I will find a part-time job closer. I think I can do 32 hours a week as long as I don't have to drive too hard. I may have a job selling tickets at Andy Williams Theatre and have the summer off too. He does not do summer shows. Maybe I can handle that since all I have to do is take phone reservations.
     I did a similar job last year and handled it okay. I guess I don't want to make too much money anyway. I really I am glad I can work at anything - I have gotten bored sitting home. It feels good to do something productive. This week I am just staying home and recuperating, and I should be okay next week. I guess we have to listen to our bodies. My boss wanted me to go in this week and it is hard to explain I just can't do it. It is funny because you can feel so bad but look okay to people.

Roger G's March 31 reply to Marilyn V's March 29, 2006 - Hi Marilyn, Alcohol can cause or worsen CHF. If he stops drinking, it may improve.

Roger G's March 31 reply to Bonnie K's March 29, 2006 - Hi Bonnie, I am not sure if foot pain is related to CHF but I used to get severe pain in my feet, probably from gout. Not much seemed to help until someone told me to drink cherry juice. I did not believe it but I said why not. After two years on and off cherry juice I am a believer. Give it a try.

Bill H's March 31 reply to Bonnie K's March 29, 2006 - Hi Bonnie, I'm not sure but it sure sounds like gout. She really should see a doctor to confirm for sure if it is. If so, then the doctor can prescribe prednisone. I can tell you from experience that gout is the most painful thing I have ever felt in 56 years of living. In my case it was brought on by the water pills.
Jon's note: It does sound like gout but I recommend looking at allopurinol as a solution before prednisone since it is much more CHF-friendly. Also have the doctor consider neuropathy.

Tom S's March 31 reply to Bonnie K's March 29, 2006 - Hello Bonnie, It seems to me there is some correlation there. I had foot pain on an almost constant basis until I would go in the hospital and get on supplemental oxygen, then it would go away. I could not get supplemental oxygen at home because my "sats" were at the 91 to 92% level and had to be 88% or less based on arterial blood gas samples. I finally reached that benchmark and notice that when I am off the oxygen even for a few minutes, my lower legs and feet start hurting again. A few good whiffs of oxygen from my converter and the pains subside.
     I also had headaches on a regular basis before I got supplemental oxygen and noticed that they to disappeared with the extra boost of nearly pure oxygen. It is hard to keep the oxygen cannula on all night when I am sleeping, so generally I wake up with both a headache and foot and lower leg aches. A few minutes on the oxygen machine and both disappear.
     I am sure there are those in the medical field who would dispute what I just wrote, but guess what I believe there is a correlation and get to test it our on a regular basis. Besides I believe I know my body better some times that the MDs.

Holly, March 31, 2006 - Hi all, First, Jon, I hope you are feeling better and are starting on the uphill from your illness. I just wanted to let you know that I have been in contact with Dr. A. Patel at the University of Pittsburgh for the past few weeks and I just received an e-mail yesterday that said they will be starting a catheter-based stem cell study in May and that I may be a good candidate. They will be contacting me again when it gets closer. I'm at least interested in finding out what's involved.
     They are taking the patients own stem cells and reinjecting them into the damaged heart muscle. I have 36% of my left ventricle scarred and if stem cells could rejuvenate some of that, what a miracle! I know it's still very controversial but I feel it's worth checking out since I am only 49 years old. I'll keep you posted. If anyone else has heard about this treatment, I'd love to hear.
Jon's note: Please find out if this uses the patient's hip bone marrow cells or not.

Richard M's March 31 reply to Jon's March 25, 2006 - Hi Jon, Your note said that Theravitae's procedure is not - in my opinion - actual stem cell therapy.
     Maybe I am missing something but is not Theravitae's procedure to inject stem cells into the heart to replace the muscle parts that are damaged? Would this not be stem cell therapy?

Jon's March 31 reply to Richard M's March 31, 2006 - This is one reason I have not yet put up a separate page on stem cell therapies - it is not a defined area of treatment yet. TheraVitae uses a therapy they call "VesCell" and it uses cells drawn from your own blood. Please note that these cells are not drawn from bone marrow, umbilical cord material, fetal material or any other source except your own adult blood. TheraVitae calls these "Angionic Precursor Cells" or ACPs. Please note that only TheraVitae - to my knowledge - considers these to be any type of real stem cell. These cells are more limited in their ability to adapt to performing different than their usual functions than "real" adult stem cells such as those taken from a person's own bone marrow, where blood cells are actually produced in the human body.
     TheraVitae's own press kits say, "The goal of VesCell therapy is not to increase numbers such as Ejection Fraction (EF%). It is to improve the patient's quality of life by relieving symptoms such as angina pectoris (chest pain) ..." So one must question if real stem cells are being used simply because real stem cells take over the action of cardiac muscle cells, thus improving heart output, thus increasing EF.
     So, unless this needs to be explained further, I'd say it's pretty clear that although VesCell may be using slightly adaptable cells that may actually work to some degree - and that would be great - I don't think they are using actual adult stem cells by any current definition. Jon.

Hope M's March 31 reply to Patrick H's March 27, 2006 - Hi Patrick, I have had CHF with an ejection fraction of 30% since 1994. You asked, "Is there such a thing as mild CHF that is survivable over a long period of time, say 15 to 20 years?" I guess I'd have to say a resounding, "Yes!" although so far I'm only at 12 years. :-)

Jim C, March 31, 2006 - Hello everybody, I have been beating CHF for three years now. I've had an ICD for the last two and a half years. Right now I go to a CHF clinic every two months for a check up and they also draw blood to see if my meds are where they need to be. I'm a chef by trade but I can't work too long in a hot kitchen. This is quite hard on me at times.
     Several months ago I started a site to help people with CHF to learn to change their diet, you know, lower that sodium. Several hospitals use it for their CHF clinic. If you would like stop by and read the recipes and please use them. That would make me very happy and I would feel worth something. Stop by often as I will be adding new info as time goes on. Stay well, Jim C.

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

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