The paperwork never ends The Archives
March 16-31, 2005 Archive Index CHFpatients.com

Lowell P 3-16     BNP and diuretic questions
 
Jon's 3-16 reply to Lowell P's 3-16     BNP and diuretics
 
Sandy N's 3-16 reply to Dale E's 3-15     insomnia and depression with CHF
 
Jeffrey F 3-16     trouble over Medtronic ICD recall
 
Donna H's 3-16 reply to Tom S' 3-7     pacer experience, stress and CHF question
 
Kay B 3-16     seek ICD and driving experiences, suggestions
 
Lowell P's 3-16 reply to Jon's 3-15     why would you retain fluid with normal heart function?
 
Jon's 3-16 reply to Lowell P's 3-16     heart failure is more than a weak heart
 
Larry O's 3-16 reply to Jon's 3-16     questions about gas transfer
 
Jon's 3-16 reply to Larry O's 3-16     gas transfer
 
Sandy N's 3-16 reply to Donna H's 3-16     stress and heart failure
 
Marty C's 3-16 reply to Dale E's 3-15     insomnia and depression with CHF
 
Jon's 3-16 reply to Donna H's 3-16     stress and heart failure
 
Dian J 3-17     is this treatment the norm?
 
Pat Y 3-17     please don't stop your medication
 
Donna H's 3-17 reply to Jon's 3-16     update, stress, glad forum is back
 
Larry T's 3-17 reply to Jeffrey F's 3-16     Medtronic should replace recalled ICDs
 
Amber S 3-17     seek advice on coping with mother's death
 
Michelle A 3-17     seek low oxygen saturation during exercise experiences
 
Jon 3-18     Medtronic ICD recall url
 
Rajika B 3-18     opportunity to participate in research - UK only!
 
Lowell P's 3-18 reply to Jon's 3-16     lots to know about CHF
 
Sandy N's 3-18 reply to Amber S' 3-17     sincere condolences
 
Cary Deen's 3-18 reply to Jeffrey F's 3-16     my take on niacin and Niaspan
 
Susan L's 3-18 reply to Jon's 3-16     can you elaborate on comments
 
Jon's 3-18 reply to Susan L's 3-18     CHF and the body's energy level
 
Dan S 3-18     seek CHF doc in Peoria, Illinois area
 
Davida S' 3-20 reply to El R's 3-11     please get certain answers
 
Davida S' 3-20 reply to Dale E's 3-15     help with depression sounds needed
 
Marcia H's 3-20 reply to Jon's 3-16     can stress cause gout attack?
 
Chris J 3-20     Ryan had angioplasty and feels better
 
Jacky B 3-20     should I worry about PVCs post-amiodarone?
 
Norma L's 3-20 reply to Amber's 3-17     heart problems may go undiagnosed
 
Roger Hugh's 3-20 reply to Dan's 3-18     heart doctor experience
 
Jeffrey F's 3-20 reply to Larry T's 3-17     Medtronic device recall experience
 
Robert M 3-20     seek diuretic allergy experiences
 
Marsha H 3-20     seek experiences with tilt-table & nuclear stress tests
 
Jon's 3-20 reply to Marsha H's 3-20     nuclear stress test
 
El R 3-20     don't know what is coming up
 
Jon's 3-20 reply to El R's 3-20     this information is critical
 
Lowell P 3-20     exercise harder some days
 
Jacky B's 3-20 reply to Jon's 3-20     Coreg experience, PVCs
 
Jon 3-20     donation methods
 
Jon 3-21     new article online
 
Marcia H 3-21     forgot to mention that I take a beta-blocker
 
Lisa K's 3-21 reply to El R's 3-20     UCLA experiences
 
Myron H 3-21     does this number seem accurate?
 
Jon's 3-21 reply to Myron H's 3-21     numbers
 
El R's 3-21 reply to Jon's 3-20     further information
 
Mary Anne M 3-21     seek pacemaker information
 
Jon 3-22     slight slide in heart class
 
Hannah J 3-22     what is my husband's prognosis?
 
Shadrach 3-22     seek health insurance information
 
Kay R 3-23     worried about husband with recalled ICD/pacer
 
Dale E 3-23     thank you all
 
Susan D 3-23     seek CHFers' insights
 
Jack D's 3-23 reply to Jon's 3-22     imagine that!
 
Jon's 3-23 reply to Jack D's 3-23     good news too, though
 
Susan B 3-23     just have to vent!
 
Hannah 3-23     e-mail address, further info
 
El R 3-23     update on my treatment plan
 
El R's 3-23 reply to Davida S' 3-20     doctor clarified what he said
 
Carla S' 3-23 reply to Hannah J's 3-22     living with heart failure & more
 
Barbara V 3-23     test results, meds changes, any ideas?
 
Danielle V 3-23     seek another person who has gone through this
 
Chuck F's 3-24 reply to Danielle V's 3-23     had a risky heart surgery also
 
Marty T 3-24     seek ideas about these PVCs
 
Hannah J's 3-24 reply to Carla S' 3-23     caught this on a follow-up after heart attack
 
Richard A's 3-24 reply to Jon's 3-22     ACE inhibitor questions
 
Madeline D 3-24     great news after last echo
 
El R 3-24     update
 
El R's 3-24 reply to Susan D's 3-23     exercise and heart failure
 
Jon's 3-24 reply to El R's 3-24     upper body exercise and heart failure
 
Jody T 3-26     my husband won't eat low sodium
 
El R 3-26     treatment plan
 
Donna V 3-26     biventricular pacemaker experience & more
 
Clara D's 3-26 reply to Marty T's 3-24     update, fish oil helps my PVCs
 
Norma L's 3-26 reply to El R's 3-24     weights workouts help me
 
Valerie R 3-26     CHF and digestive trouble - any ideas?
 
Carl S' 3-26 reply to Robert M's 3-20     diuretic sensitivity experience
 
Sabrina B 3-26     high blood pressure - seek ideas
 
Jon's 3-26 reply to Sabrina B's 3-26     high blood pressure ideas
 
Renee's 3-26 reply to Jon's 3-22     worried about husband returning to work
 
Jon's 3-26 reply to Renee's 3-26     returning to work
 
Victor 3-26     online pharmacy service
 
Tom W's 3-26 reply to Jody T's 3-26     changing to low sodium eating
 
Jack D's 3-26 reply to Valerie R's 3-26     Beano may help
 
Jack D's 3-26 reply to Jody T's 3-26     people and their food
 
Anne Y's 3-27 reply to Valerie R's 3-26     heart failure & indigestion with gas
 
Valerie R's 3-27 reply to Jon's 3-26     also to Jack
 
Jon's 3-27 reply to Valerie R's 3-27     getting rid of fluid in abdomen
 
Allan A 3-27     seek angioprim information
 
Jon's 3-27 reply to Allan A's 3-27     angioprim
 
Andy B 3-27     groin edema, climate questions
 
Margaret D 3-28     seek amiodarone experiences
 
Mike C's 3-28 reply to Andy B's 3-27     possibility for fluid in groin
 
Beverly H 3-28     seek CHF doc in Tulsa, Oklahoma
 
Mike C 3-28     seek experiences with Coreg and the VA system
 
Julian S 3-29     can I take Coreg with asthma?
 
Jon's 3-29 reply to Julian S' 3-29     Coreg and asthma
 
Chuck F's 3-29 reply to Mike C's 3-28     Veterans' Administration & Coreg
 
Lisa P 3-29     seek info on bundle branch block
 
Tunny G's 3-29 reply to Mike C's 3-28     Veterans' Administration & Coreg
 
Johnny Q 3-29     seek ideas on arthritis and heart failure
 
Anita S' 3-29 reply to Mike C's 3-28     Veterans' Administration & Coreg
 
Scott Brown's 3-29 reply to Valerie R's 3-26     heart failure and digestion problems
 
Cathy D 3-30     low sodium eating can be good
 
Michael K 3-30     will asthma treatment hurt prognosis?
 
Dale E 3-30     update on my dad
 
Donna H's 3-30 reply to Mike C's 3-28     Coreg and the VA system
 
Jon 3-31     donation thanks and reminder
 
Sandy N's 3-31 reply to Cathy D's 3-30     sounds like a great Easter
 
Jacky B 3-31     statistics questions & more
 
Jon's 3-31 reply to Jacky B's 3-31     statistics & more
 
Peggy Y 3-31     seek experiences with a-fib & ablation
 
Jennifer G 3-31     questions about Coreg and more
 


Lowell P, March 16, 2005 - Dear Jon, My BNP has been going up and down lately. It was about 650 and then I went off metropolol and started taking Coreg 25mg twice a day. My BNP then went up to 1200 and then I took a diuretic accelerator for three days and it went back to about 700. It then went up to about 1200 again so my doc had me on the accelerator again every other day for three weeks. It is now back to about 700. I think the accelerator is metrolozone. He is keeping me on this continually now. He said he expects it to go to about 500 next time. How severe is a BNP of 500,s Jon? What do you think of his strategy? I had bypass surgery and an infarct during surgery eight months ago. Thanks from Arizona. Lpepper3m@aol.com


Jon's March 16 reply to Lowell P's March 16, 2005 - Hi Lowell, Elevated BNP indicates higher than desired pressures in the heart or heart enlargement. However, it is just one measure of how heart failure is at any given moment. For instance, straying from your low sodium diet can raise BNP significantly by itself. In men with heart failure, BNP of about 500 suggests functional class 2 to 3. However, if a person has been staying on a low sodium diet and taking CHF meds for awhile, BNP can be misleading. How do you feel? That may be more important.
     Rather than add zaroxolyn to furosemide, why not switch to Demadex (torsemide) as your diuretic? It's 4 times as strong and isn't affected by food intake. Jon.


Sandy N's March 16 reply to Dale E's March 15, 2005 - Hi Dale, What your dad is going through is very real. I too suffer from both insonmia and depression. My doctor gave me Lexapro at 20mg for my depression and it has helped my state of mind. I use over-the-counter sleep aids about 3 days of the week. I guess it's something most of us with CHF must get used to. The library provides me with novels for the sleepless nights. I might add that my reading skills are improving. <lol> bleuskiiisgrl@yahoo.com


Jeffrey F, March 16, 2005 - Hello all, My name is Jeffrey and I am awaiting a transplant. I am 48 years old and have had 6 heart attacks and am a diabetic as well. I have a Medtronic ICD and have just found out that it is being recalled and has to be replaced. My doctor is concerned that my heart is not strong enough for additional surgery. I had many complications from the procedure to install the original one. My doctor told me that Medtronic will pay for the new ICD, but not for the procedure. My insurance company has told me that they will not pay for the surgery either. I take an incredible amount of daily meds:
     Citracal 1200 mg daily, Isosorbide 60 mg daily, Niaspan 1000 mg daily (does anyone else hate this med?), magnesium 500 mg daily, lisinipril 10 mg daily, spironolatone 25 mg daily, potassium 40 mEq daily, warfarin 15 mg daily, Lipitor 20 mg daily, Digitek 250 mcg daily, furosemide 60 mg daily, Coreg 75 mg daily, quinine 260 mg daily. I just found this board, it's nice to know that I am not alone. imjeffree@aol.com


Donna H's March 16 reply to Tom S' March 7, 2005 - Hi Tom, My husband's EF was around 10% when he had his BiV pacemaker implanted last July. Unfortunately it wasn't until December that they were able to get the third lead hooked up but it has made a tremendous difference in the way he feels. I know it is different for every person but he went from being in a wheelchair to being able to walk again. We don't know what his EF is now but to him, feeling better made the surgery well worth it.
     Now a question for Jon or anyone else that might have some insight. Recently I was told that my job will be terminated and I have had difficulty finding another. My husband seems to be taking this harder than I am and it seems to me it is causing his CHF to worsen. Does anyone else notice that stress directly affects your CHF? He doesn't want to take any kind of antidepressants and has refused them every time his doctors suggest it. herdrich@grm.net


Kay B, March 16, 2005 - Howdy, I am 35 years old with a CRT pacemaker/ICD and my concern is driving. This gizmo has given me the ability to life a very full life! Last summer my ICD fired 4 times in a row. I was put on 60 mg sotalol. However, I was advised to cut back to 30 mg because of my asthma and funky side effects.
     Anyway, all was going well except last Friday my ICD fired twice while I was driving. I recall no warning prior to the shocks and I recovered well. Thankfully I was in a parking lot and the only casualty was my tire. I love my pacemaker/ICD but what are other folks doing about driving? My sotalol was bumped up to 60 mg for now. Personally, I am hoping that 60 mg right off the bat was too much and that now perhaps my system can tolerate it.
     Right now, I can't drive, which I do agree with, but if all goes well after my induced ICD shock I may have permission to drive. I am terrified. Smiles, Kay B. mbilczo@hotmail.com


Lowell P's March 16 reply to Jon's March 15, 2005 - Dear Jon, If your BNP and EF are normal, why would your body retain fluid? I thought retaining fluid was an indication of an inadequate pump. Regards, Lowell. Lpepper3m@aol.com


Jon's March 16 reply to Lowell P's March 16, 2005 - Hi Lowell, I think you're too focused on test results here. My point is exactly that test results do not tell the whole story with heart failure. Heart failure affects entire systems inside your body - not just your heart. That's why heart function is only one factor in recovery.
     With heart failure, your neurohormonal system goes crazy, muscle fiber types change, the endothelium no longer works right, your heart's energy reserve is reduced, bodily gas transfer changes for the worse, skeletal muscle is unable to effectively use all the the oxygen it gets, and more. That's why restoring blood flow to the heart does not always fully correct heart function - and restoring heart function does not always fully restore you to pre-CHF physical functioning. This is one reason why ACE inhibitors and beta-blockers are recommended for life in the CHF treatment guidelines even if full heart function is restored. Doctors are only now beginning to understand this.
     In other words, how you feel and physically function really are more important than heart function measurements, and heart function is not the end-all goal for heart failure treatment. Treatment should be aimed at improving how well we can live our lives whether or not our heart function gets back to "normal." At least, that's my take. ;-) Jon.


Larry O's March 16 reply to Jon's March 16, 2005 - Hi Jon, In your reply to Lowell, you say that with CHF, bodily gas transfer changes for the worse. What exactly does this mean? For the past few weeks I have had considerable flatulence, which is very unusual for me. Could my dilated cardiomyopathy be the cause? So far, it is not causing me any of the symptoms I read about on this board. I feel 100%. I only found out about the cardiomyopathy through a routine ECG done at my annual physical in June of 2003. Thanks. loconnor33@rogers.com


Jon's March 16 reply to Larry O's March 16, 2005 - Hi Larry, Having been diagnosed before coming down with actual CHF (symptoms), with proper treatment you may never suffer symptoms at all. That's the best possible outcome! I did make my statement to Lowell sound like flatulence, didn't I? <g> I actually meant the process in your lungs, blood, and muscles where oxygen is carried to, and absorbed and used by, the body. I apologize for being so vague. In CHF, your body usually can't make really effective use of the oxygen your heart can pump through the body, and that contributes to our problems significantly. Jon.


Sandy N's March 16 reply to Donna H's March 16, 2005 - Hi Donna, Yes, I was having a lot of problems brought on by stress. My doctor put me on Lexapro and I have been able to eliminate most of my depression, which is aggravated by stress (that came on since being diagnosed with CHF). Knowing your body is not functioning properly and the thought of dying sooner than one should, is enough to put you under a lot of stress. Sometimes I feel like a tiem bomb. There is no shame when getting a little help! bleuskiiisgrl@yahoo.com


Marty C's March 16 reply to Dale E's March 15, 2005 - Hi Dale, I have suffered from chronic insomnia for many years, even before I developed heart failure last summer. I'm age 45, with an EF of 40 to 45%, have CHF/LBBB/GERD, along with chronic depression. I am taking target doses of Coreg, Ramipril, Inspra, along with Zoloft for the depression and 2 to 3 mg of Ambien most nights for insomnia, down from 15 mg originally.
     My greatest advice would be to let your dad know that things can improve, and we all have to stay on the attack. As Jon has pointed out in many places, including The Manual, a positive attitude is extremely important to coping with this illness, or any other illness for that matter. You should get your dad in to see a mental health professional. He may need to be informed of just how many different ways they can help, including relaxation therapy, sleep hygiene, and especially the underlying depression you mention. It's a tragedy that our culture has so stigmatized seeing a mental health professional that people suffer needlessly when help is available. Imagine a person with a fractured skull saying they don't need a doctor. Help him to see this from that perspective.
     Sleeping pills are helpful, but they are only one part of a solution. Lack of sleep brings depression, more depression brings lack of sleep - we have to break that cycle somehow. For me, talking therapy and relaxation classes were a tremendous help. Understanding the role of adrenaline in our bodies helped me see what was happening when I would have anxiety attacks over not being able to go to sleep for days at a time. Family support and prayer made an immeasurable difference as well. I hope this helps and feel free to e-mail me if you have any questions. Marty marty.culleton@rs.af.mil


Jon's March 16 reply to Donna H's March 16, 2005 - Hi everyone, I'd like to point out a different perspective on stress and heart failure. For CHFers taking Coreg or Toprol-XL, remember that these drugs block beta-receptors in the body. Beta-receptors are magnets for "speed up" neurohormones similar to adrenaline. What beta-blocking does is stop the body's naturally produced adrenaline-like substances from reaching and "locking into" their proper receptor. So the adrenaline-like substances produced by your body during real stress can't dissipate (go away) as fast because they stay in the bloodstream looking for a receptor which they are not going to find.
     That means you are actually physically stressed much longer when you are emotionally stressed. Believe me, it's harder on your body, which makes it harder on your emotions. Sometimes I would feel very sick from this effect when I got stressed out. So avoiding emotional stress when it's reasonable to do so is actually a smart move for your physical body's sake as well. Jon.


Dian J, March 17, 2005 - Hello, This is my first visit to this site. My husband was diagnosed with cardiomyopathy 3 weeks ago. We are still learning and relearning ways to live. At this time, Larry is on a low sodium diet and 3 drugs - two for congestive heart failure and one to increase the pumping ability of his heart, which is at 10%. The third doctor to see him specializes in pacemakers, advised him to give the drugs at least 3 months. Is this normal? It sounds so long to wait when you are being told you are at risk for sudden death. Please let me know what you have experienced. Many thanks, Dian. dilarjohnson@aol.com
 
Jon's note: I don't know if it is the norm or not, but it is a very good idea. In many people, meds therapy given the chance to work, can do exactly that - work. Personally, I don't believe low EF alone is a major risk factor for sudden death - generally speaking. Does he have other risk factors for sudden cardiac death?


Pat Y, March 17, 2005 - Hello everyone, Over and over it has been said to stay on ACE inhibitors and beta-blockers for life here. Before I found this site I had convinced the medical profession to lower my dosages and to actually stop some of my medications. At the time, Coreg was just becoming a regular CHF drug and it had not yet been prescribed for me. According to my echo results, all heart measurements and EF had returned to normal limits.
     Much to my surprise, I suddenly went back into heart failure. So to those of you whose doctors say you are "cured" and want to stop your medication, please question your doctors carefully about this decision. Going back into CHF was not fun! I have taken my medication religiously for the past five years after my second CHF onset. By the way, I am a long-time survivor. I was diagnosed December 25, 1994. PTYoumans@aol.com


Donna H's March 17 reply to Jon's March 16, 2005 - Hi Jon, Thanks for explaining this to me. I had never heard it explained that way before and it makes a lot of sense. I have noticed that when he is stressed, he doesn't get over it like he used to.
     I also want to apologize for my quick end to my post. I meant to also tell you how glad I am to see this site up and running again but the hospital called and we headed off to the emergency room. My husband had the flu a couple of weeks ago and went into failure but doubled his Lasix and in a week or so he was feeling better. However, when the transplant team found out, they wanted him to come to the emergency room immediately. He checked out fine other than that his pacer/ICD seems to fire when he lies on his left side for more than two or three minutes. He is going back for an ultrasound in a couple of weeks, then back to the transplant center for more tests.
     Again, thanks for all your work on this site, Jon. It truly is a life saver! herdrich@grm.net


Larry T's March 17 reply to Jeffrey F's March 16, 2005 - Hi Jeffrey, If your ICD is one of the ones that the battery may go dead, it is my understanding that Medtronic will replace them at no cost to you. God bless, Larry. carolthornton@comcast.net
 
Jon's note: Medtronic never replied to my message!


Amber S, March 17, 2005 - Hello, I am writing regarding CHF. My mom passed away about four months ago from it. It just hit her like a rock. It all happened in about six months, with swelling, then chest pain for a week or so, then dead in about an hour. Help! Someone please give me some advice on how to handle all this. aschaefer@hotmail.com


Michelle A, March 17, 2005 - Hi all, I recently found out that my oxygen sats drop when I exercise. They go from 95% at rest to 86% three minutes after I begin walking at my normal pace. I had a cath in October that showed good heart function at rest, so at first we thought I had a lung problem. Lung disease was ruled out and my only abnormal test result was from my hall walk test. Next week I'm beginning cardiac rehab to try to maximize my heart function during exercise. I have a stress test scheduled on Monday. Has anyone else had this problem? What are your sats at rest and with exercise? Jon, I'm so glad you're back!miship@hotmail.com


Jon, March 18, 2005 - Hi all, For some information about the Medtronic ICD recall, don't forget to check www.medtronicinfo.com/. I e-mailed a good source at Medtronic and hope to hear from them as well with more info. Jon.


Rajika B, March 18, 2005 - (Jon's note - While I don't know any details of this, I allowed the post after talking to Rajika. Please also visit their web site for more - see "Sectors" then "Healthcare") Hi everyone, I work with a global market research firm called Research International (www.riusa.com). We are conducting research for a leading pharmaceutical company for a new drug for treating CHF. This study is of global relevance and is being conducted in 6 countries, UK being one of them. We are looking for patients in the UK only to participate in a one-hour interview at either a central location or in-home. You will be paid for your time and it is a very interesting interview for those with CHF. We have already completed these interviews in the US and the patients enjoyed participating.
     Prior to being selected, you will need to undergo a screening process which takes approximately 5 minutes on the phone. You must qualify before you can participate. The interviews are scheduled to take place all day on March 21 and 22 and probably even a few days after. If you or anyone you know in the UK is willing and interestd in participating, please email me at r.basu@research-int.com or call Eoin Dowdell at 0207-7491442 at your earliest convenience.
     I appreciate your time and help in this research process. Regards, Rajika Basu, 312-981-5827, Research International USA. r.basu@research-int.com


Lowell P's March 18 reply to Jon's March 16, 2005 - Hi Jon, I guess I just simply don't know enough about this CHF stuff. I had no idea that a poorly functioning heart would influence oxygen utilization in the muscles. I feel pretty good. I don't get SOB unless I do something very strenuous. It does seem however that it is becoming more difficult at times to walk very far. My legs get achy and tired. When I first came home from the hospital it seemed I could walk easier than I can now. I can walk a couple of miles with no problem but my legs get achy. Thanks for the info about the importance of salt. Once again, I had the wrong concept. I thought it simply made us retain more fluid and did not realize it impacted BNP.
     Sure glad you're back and hope you feel well too. Coreg at 25mg makes me dizzy too. Lowell. Lpepper3m@aol.com
 
Jon's note: See chfpatients.com/faq/exercise.htm#exercise_in_chf for a start on muscles and heart failure. It sounds like you are deconditioning - you need to start a well thought out exercise program! Don't forget to use the Heart Failure FAQ as well.


Sandy N's March 18 reply to Amber S' March 17, 2005 - My dear Amber, I'm so sorry to hear about your loss. Your post has me thinking about my own three adult children and how they must worry about me. Just know that your mom is at peace and is with you during your grief. Now it's time for you to take care of you. My condolences to you and your family. bleuskiiisgrl@yahoo.com


Cary Deen's March 18 reply to Jeffrey F's March 16, 2005 - Hi Jeffrey, My doctor wanted to put me on 500mg of Niaspan on a daily basis to bring down my cholestrol and triglycerides. I did a little research and found that Niaspan is slow-release niacin. It also can cause damage to your liver. I also found out that fast-acting niacin will not cause damage to your liver. I told my doctor this and also told him I would not be taking Niaspan, but I will be taking 500mg of fast-acting niacin on a daily basis. I'm curious to find out what my cholesteral and triglyceride levels are with my next blood tests, which are in about two weeks. Just thought you might be interested. Take care. cdeen10@bellsouth.net


Susan L's March 18 reply to Jon's March 16, 2005 - Hi Jon, Can you expand on this comment you wrote: "In CHF, your body usually can't make really effective use of the oxygen your heart can pump through the body"? So are you saying in addition to the fact that the heart isn't pumping sufficiently, the amount of oxygenated blood it does supply to the muscles and organs is not being used efficiently? How so? Is it due to the medications we are on or is there some other inhibitor intrinsic to our condition? susanlocurto@hotmail.com


Jon's March 18 reply to Susan L's March 18, 2005 - Hi Susan, Yes. For a good start on the topic of energy, skeletal muscle, and heart failure, see chfpatients.com/faq/exercise.htm#exercise_in_chf. Also, certain substances required for the production and use of energy in the human body may be lower in CHFers than in healthy persons, including nitric oxide and CoQ10. Electrolyte levels may also be "off" affecting the body's systems in multiple ways - magnesium level is very difficult to accurately measure because blood level does not indicate the body's actual stored magnesium. That's why I recommend that all CHFers take a magnesium supplement daily.
     It's not so much an inhibitor acting on us but rather a near-cascade of bodily system irregularites caused by heart failure and its neurohormonal and chemical nasties. This gets pretty complex as gene expression irregularities come into play, further reducing the body's energy chain functioning. Levels of amino acids that perform critical roles in energy production and use (like creatine, arginine, carnitine and taurine) are reduced. Toss in deconditioning and it's a strange and pretty vicious brew. Does that help any? Jon.


Dan S, March 18, 2005 - Hi Jon, I am encouraged to see The Beat Goes On back up and in full swing. I am looking for a new CHF doctor in the Peoria, Illinois area and welcome any recommendations. Thanks for your great efforts and sacrifice in keeping this site afloat! Dan. dlshick@ilstu.edu


Davida S' March 20 reply to El R's March 11, 2005 - Hi, As soon as I started reading your post I thought of cirrhosis right away. The only time I have seen this happen was with a friend who had cirrhosis brought on by hepatitis c. Bleeding in the abdomen can be dangerous. I agree with Jon - please get a clear understanding of what is going on.
     Low blood pressure can also be caused by internal bleeding. Please follow up with your doctor and if the doctor's English is not clear, ask for the nurse to come in and explain this better to you. Do not leave the office with questions. When you go back to the doctor's office for follow-up, the doctor will have your results of all your tests right there in your folder, so ask the nurse or doctor to make you a copy right then and there for you. That is usually free. Most times it's the medical records department that charges 10 cents per page. Keep us posted. Take care. cavalier_1@msn.com


Davida S' March 20 reply to Dale E's March 15, 2005 - Hi Dale, Some recent studies have indicated concern with depression in heart patients. My husband slipped into a terrible depression right before my eyes and it wasn't until it turned into anxiety attacks that it was apparent to me. It would be great if your father could speak with a counselor or join a support group at one of your local hospitals. It's hard to sleep when you have concerns or when suffering from anxiety over your health. Please see if you can get him help with his depression; pills in this case may be just a band aid. It would be great if he could find a way to cope with the changes he is experiencing, with the hopes of him getting the much needed rest he needs. cavalier_1@msn.com


Marcia H's March 20 reply to Jon's March 16, 2005 - Hello Jon, I had a very upsetting round with a tenant over several days. I am now having a serious gout attack. I don't think I ate anything wrong but was very stressed. Do you think that is the reason for the gout attack? mhilley@kpunet.net
 
Jon's note: I just don't know. I generally consider stress an aggravating factor rather than an outright cause of health problems. It adds to your body's problems but usually (and this is very individual) is not a root cause. That's just my personal opinion.


Chris J, March 20, 2005 - Hello Jon, Guess what? Ryan is now the proud owner of a new Express2 monorail stent. The RA graft was closed. Another one has some blockage, but the cardiologist wasn't able to stent it. He thinks Plavix will help. Thank you for your response to us, it was good to have your input. The procedure went well. Ryan was in the hospital only overnight. He had some chest pain but nitro worked its magic. Ryan is feeling better. He has much less shortness of breath and that "tightness" feeling is gone. Hope springs eternal in our house today. Bless you Jon, you are greatly appreciated. Ryan and Chris. tibia456@aol.com
 
Jon's note: I'm glad he feels better and that he got this done before the blockage caused him any serious harm.


Jacky B, March 20, 2005 - Hello everyone, Am I worrying unnecessarily? I took amiodarone (Cordarone) for 4-1/2 years for NSVT (successfully). I was diagnosed 4 years ago with cardiomyopathy and LBBB diagnosed four years ago. I take Coreg 12.5 mg twice a day, Diovan 160 mg, Lipitor 10 mg, Synthroid 0.1 mg, aspirin 81 mg. My EF fluctuates between 35 and 40%. I stopped taking amiodarone three and a half weeks ago with my doctor's okay. We thought the drugs I am taking might be adequate. Amiodarone has a very long half life so I have a long way to go to get it out of my system. I feel fine except for PVCs, which are not noticeable during the day but an hour or more at a time during the night of bigeminy and trigeminy. I know that PVCs are harmless but wonder if I should be concerned. I really don't want to go back on amiodarone if I can help it! jackymwb@earthlink.net
 
Jon's note: Have you considered raising your Coreg dose some more?


Norma L's March 20 reply to Amber's March 17, 2005 - Hello Amber, Perhaps your mother did have problems before she was diagnosed and never realized it. I was diagonsed in June of 2003, but now I realize I had problems for at least 5 years before that which just weren't correctly diagnosed. Doctors were treating me for bronchitis, pneunomia, etc,.., problems with my chest every winter. Finally the doctor I see now said there has to be something else wrong for me to have this all the time. He sent me for chest x-rays, and then an echocardiogram and heart catheterization. He then diagnosed me as having CHF. He put me on an ACE inhibitor, beta-blocker, and Lasix.
     I really came out of it and am feeling very good today. Of course, there are days I can't do all that I used to, but I am 81! By the way, I fought him the whole way, but I finally had to accept the truth. nvl@pennswoods.net


Roger Hugh's March 20 reply to Dan's March 18, 2005 - Hi Dan, I had to change doctors because of insurance changing at my place of employment. Two doctors and a knowledgeable friend independently, including my old cardiologist, recommended Dr. Subhash Patel. I have met him once and was pleased. I was with Heart Midwest for 7 years till the first of this year and I received excellent care there. Let me know if I can be of any additional assistance. rjhugh@mtco.com


Jeffrey F's March 20 reply to Larry T's March 17, 2005 - Hi, Medtronic is paying for the recalled pacemaker but they are not paying for the procedure to replace it. They are expecting my insurance company to pay the bill for the replacement. Where does that make any sense? I read every day that insurance companies are doing anything and everything to curb costs, and they are going to pay for this?
     My device was implanted in Rhode Island and I have since moved to Massachusetts. MassHealth will not pay for the device to be exchanged in Rhode Island, and my current cardiologist does not want to assume the liability to do it. My heart is very weak and the transplant team said my next surgery has to be the transplant because they are not confident of my heart under sedation.
     The story has made the news. Here is a link to the story. "News Channel 10 - News - Man Awaits Heart Transplant; Bill Not Covered By MassHealth" - http://www.turnto10.com/news/4295881/detail.html imjeffree@aol.com


Robert M, March 20, 2005 - Hello everyone, Does anyone else get sick, or allergic to diuretics? I have tried taking by troach, cream, etc. My doc will not let me have IV Lasix or anything, and Edecrin makes me quite ill. I am in a real mess, just cramped and throwing up 24/7. Where I am located, I cannot find help. Any information or similiar experiences I would greatly appreciate. Thank you. bobby010nyc@aol.com


Marsha H, March 20, 2005 - Hi, A young friend who is like my own daughter is going to have two tests done next week in preparation for an angioplasty to fix a blockage at the back of her heart. I think she flunked a thallium treadmill test. She's now in a new city with a new doc and doesn't have much information yet. She is having a nuclear stress test Monday. Is that the same as a MUGA scan? On Wednesday, she is having a tilt table test, which is going to be searching for blockages in the carotid arteries as I understand it. Does anyone know what these tests involve as a practical matter? She has two babies and is anxious about all this and I'd like to assure her as much as I can. jeffsmimi@earthlink.net


Jon's March 20 reply to Marsha H's March 20, 2005 - Hi Marsha, The nuclear stress test is usually a MUGA scan done in 2 parts, with one part involving exercising on a treadmill. I have not had a tilt table test but another family member has. It can be unpleasant but as far as I know, it is not dangerous. Jon.


El R, March 20, 2005 - Hi all, I am back from my visit at UCLA. I learned that my ejection fraction is 15 to 20% but also an unexpected finding - that my mitral valve is blown. The regurgitation is severe and I am puzzled now. The doctor wants me back down there within a month or so to do endocardiac surgery to stitch the left lead in place. I have had 2 failed attempts at placing it in the vein the usual way. What I do not understand is how giving me the BiV pacer will help my heart valve?
     Don't they have to fix the valve? Can they leave it like that? I thought any infection was really dangerous if the valves are not functioning? I am waiting to hear from them and maybe when he has talked to the surgeon, the plans will evolve. That is what I am expecting. There was a man there that had a mitral valve replaced 5 years ago and now it was worn out. He was told that rather than replace it again, they were "just" going to give him a new heart. I am wondering if they will think my old heart is worth fixing the valve in, or is that where I am headed? I feel as though I am taking the first steps down that road now. Any thoughts on this? elpiscado@aol.com


Jon's March 20 reply to El R's March 20, 2005 - Hi El, One thing I cannot stress too strongly is that no one should leave a doctor's office not being absolutely sure what their condition is and also what their treatment plan is. My own CHF doctor handwrites this information on a form he calls the "report card" and no patient leaves his office without it. While we here can offer suggestions, if you don't know what your doctor has in mind, how can we offer sensible suggestions?
     If I had "severe" valve dysfunction, I would want a referral to a surgeon before I left my cardiologist's office. Geting the valve fixed is critical to your heart failure. I see no possible reason for first implanting a pacemaker of any kind.
     The man with whom you spoke does not understand his treatment plan either. No transplant team is going to accept a candidate for a donor heart when a valve replacement can solve the problem - no way.
     Please call your cardiologist and find out exactly what your current condition is, and what your treatment plan is - in precise detail complete with the reasons why. I hope this doesn't sound too harsh but this is your actual life and you must take these steps if you want control over it. It's not optional unless you want to hand over your life and your quality of life to a doctor who has not yet made the effort to make sure you know what is going on. Jon.


Lowell P, March 20, 2005 - Hi Jon, Yesterday I walked two miles and it was very difficult. Same time today I walked three miles and felt good all the way. It takes me an hour to walk three miles but so happy to be able to do it. I am rarely short of breath when I walk but do tire after a couple miles. Lowell. Lpepper3m@aol.com
 
Jon's note: Heart failure is certainly an up and down world, isn't it? That's why I discuss good days and bad days in The Manual.


Jacky B's March 20 reply to Jon's March 20, 2005 - Hi Jon, I had titrated Coreg up to 25mg twice a day, however I could not tolerate that dose. I worked it down slowly and finally found a dose I can live with! I guess I really want someone to tell me not to worry about the PVCs! jackymwb@earthlink.net


Jon, March 20, 2005 - Hi everyone, I apologize for not getting a recurring donation/subscription method done yet (the button at the top of this page does work, though). I hurt my back Friday night so I took yesterday off everything, thus got waaaay behind. I am much better today though, and don't expect to miss work Monday. Today, my wife and I went through a bunch of government paperwork for the CHFpatients.com, Inc. company. If it weren't for the government, this would be really easy! <g> Jon.


Jon, March 21, 2005 - Hi everybody, The New Page has been updated. A big thank you to Dr. Sackner-Bernstein, who alerted me to this. Jon.


Marcia H, March 21, 2005 - Hi all, I forgot to mention in my post about stress yesterday that I am on Toprol-XL at 50mg a day and that was why I wondered if there was a connection to the gout attack. Thanks again for your board and info. mhilley@kpunet.net


Lisa K's March 21 reply to El R's March 20, 2005 - Hi El, I am a patient at UCLA as well. If getting your doc on the phone doesn't work, you can easily have them fax you your doctor's notes from your visit. First they will probably ask you to sign a request, then you fax it back, and then they'll send you the notes. I think you have to do this through hospital records, but your doc's office can give you the phone and fax numbers.
     In addition, I had an EP study at UCLA a while back. The doc who did it was very overanxious to put an ICD in me. I suspected I didn't really need one and didn't let him take me back to surgery and put it in. I later spoke to my two cardiologists who agreed that I was doing well without it. You see, I know about academia and the pressure those guys are under in terms of research and generating revenue, and the EP study guy had a bad bedside manner so I was suspicious of his motivations when he told me that I needed the ICD. However, a defibrillator is different than a pacemaker so I don't know about your situation. Just an FYI about my experience with UCLA EP department. packupletsflyaway@hotmail.com


Myron H, March 21, 2005 - Hi all, I was diagnosed with IDCM in November of 2004. My EF is 30 to 35%. I am taking the following meds: 150 mg Toprol-XL and 10 mg Altace. In addition, I had an ICD installed for induced VT during an EPS. I have no CHF symptoms and hopefully will remain asymptomatic.
     Recently, I was told by my doctor that without taking medicine my chances of developing CHF would be 25% and with medicine it would be diminished even further. Does this statement seem accurate? My doctor mentioned the SOLVD study to back the above up. Thank you all for your responses. Dmiick@optonline.net


Jon's March 21 reply to Myron H's March 21, 2005 - Hi Myron, I don't have the full text of SOLVD on hand, but since it was reported in 1991, when patients were not taking beta-blockers and when CHF and its treatment were less well understood, I wouldn't rely on it alone for such a statement. This is more likely an opinion based on your doctor's experience. Whether it's accurate or not, I have no idea. However, with an EF of 35% I think your chances of developing heart failure without meds is very high, more like 95%. Since you are on good meds at good doses you may avoid CHF symptoms, especially if you control your body weight, stay physically fit through regular exercise and activity, and eat a low-sodium diet. Jon.


El R's March 21 reply to Jon's March 20, 2005 - Hi, I already have a surgeon and my doctor said he wanted to speak with him and then I'd be getting a phone call. This caught him by surprise too and yes, he should have taken the time to discuss it further, but the circumstances were what they were.
     I already have a pacer/ICD and he wants to add a left (third) lead. I think he wanted time to speak with the surgeonbefore he told me more. Was that right? No. He didn't realize I already knew what it meant. I sidetracked him. We were discussing my concerns about anesthesia and who would do it. I wanted to have this done at home and he wants me there. I believe he just wanted some time to make some decisions with the surgeon, then discuss it with me.
     In all fairness, I do not know what the man on the transplant list I spoke with understands since he barely spoke English. He was being seen in the cardiomyopathy center, so it is my guess he has more going on than just a bad valve. He was just unloading on a stranger, not giving the whole story.
     Your post did sound a little harsh. I have a good relationship with my doctor there. Although it was not right to leave me hanging, I understand why it happened the way it did. He got blind sided with the info. We had finished my visit and things looked good on the surface. I am not going to burn the only bridge I have. I am not in a position to go anywhere else and don't want to. I expect to get some answers today. elpiscado@aol.com


Mary Anne M, March 21, 2005 - Hi, I am starting to go off amiodarone, down to 50 mg once a day. What's the next step or is it off completely after that? How long does it take for this drug to clear from the system? It has been recommended to me that I have a defibrillator/pacemaker installed after one bout of a-fib last March and one short spell of tachycardia post AAA endograft repair this January. Does anyone have any input on this? Does this device really extend the life of CHF patients? mameredith@nauticom.net
 
Jon's note: This depends largely on whether you really fit the patient selection criteria.


Jon, March 22, 2005 - Hi everybody, Well, a fairly physical job does take its toll. I have slipped from class one to class 2 heart failure in the past 4 days. I am increasing my ACE inhibitor dose back to 40mg fosinopril and my Coreg dose back to 25mg. I'll see what happens! Again, it shows that regaining "normal" heart function alone is not a cure-all. Jon.


Hannah J, March 22, 2005 - Hi, I have a question regarding my husband. He is 32 years old and has an ejection fraction of 35 to 40%. We are wondering about his long-term prognosis. He has no signs of heart failure except for the low ejection fraction. rogerswife1234@yahoo.com
 
Jon's note: Please verify that this is your correct e-mail address. Thank you.


Shadrach, March 22, 2005 - Hi, Does anyone know of any insurance companies that have pretty reasonable medical insurance rates? I currently have insurance through the state of Arizona. I have been looking for a job since last June and am currently up for a job but the company is small and will not be able to offer insurance for at least another year. Which ones have you had good rates from? I have CHF and cardiomyopathy. Any info would be helpful. shadrach@cox.net


Kay R, March 23, 2005 - Hi, My first time here. My husband is one of those recalled Medtronic patients. He has ICD/pacemaker put in about 1-1/2 years ago. I will just be glad when the whole procedure is over. He goes in next Wednesday (30th). They will try to put a third lead in that they couldn't put in the first time. If they can't get it in the first try, he will stay overnight and they will try another way.
     I don't know about you other spouses but I worry constantly about him. He depends on his pacemaker to keep going. It is no backup for him. kay16743@yahoo.com


Dale E, March 23, 2005 - Hello all, Thanks to everyone for the info and help with my dad. I will relay as much info to him and my family as possible. This web site is such a blessing. Thanks again and God bless. Dale. homecapitaldale@hotmail.com


Susan D, March 23, 2005 - Hello all, First, thank you for this board. It has given me more info than I have found elsewhere. Our situation is an 88 year old male who had pnuemonia in late December to early January which sent him into heart failure. He was hospitalized and overhydrated. He was sent home too soon and crashed, then returned to the hospital and that's when the CHF diagnosis was made. His EF is 15%, BNP "well over" 2000, he stays in a-fib a good bit of the time, and is considered to be in end-stage CHF. His CHF specialist is unwilling to do a walk/stress test. The doctor put him on Coreg, Diovan, Aldactone, and Lasix. Hospice was recommended hospice and we accepted and are using this service.
     I was unprepared for this diagnosis and not educated enough to ask the right questions at the time. For those of you with heart failure, I would appreciate some insight. I have read The Manual. Please discuss "exertion or exercise hangover." This man is rather weak but he is more pigheaded than he is weak. While we do not wish for him to sit in a chair and rust, we also don't wish to see him do stupid things - a current argument is over trimming hedges. When he does exert himself - this means walking down the driveway, down the street about 25 yards and coming back - he is wiped out for days.
     He refuses to acknowledge any relationship between the walking and the wipe out. Is it really true that he can not "feel" himself exerting or becoming tired and weak or whatever at the time he is actually doing these silly things? He is pretty much in denial of the situation and the CHF. Thanks for any insight. duetfarm@mindspring.com


Jack D's March 23 reply to Jon's March 22, 2005 - Wow, Totally amazing. You mean that sitting around, growing a flat spot on your butt while having all your bodily functions restructed and reordered by the ingestion of 37 different drugs until your doctor gets "normal" readings doesn't mean you have been cured? Who would have ever guessed?
     I figured that after my several years of losing weight because there wasn't room in my stomach for food after I had cleaned my platter of medication every day that I could just quit taking all the pills and go on to mountain climbing, wind-surfing and fisticuffs with no problem at all. I'm sure glad you knocked that notion out of my mind! maddjak@hotmail.com


Jon's March 23 reply to Jack D's March 23, 2005 - Hey hey, Glad to help straighten you out! Jill needs all the help she can get in that department. <lol> It is amazing, ain't it?! I should point out to readers who don't know me as well as Jack though, that I have been lifting weights religiously for almost 2-1/2 years and until beginning full-time work was walking over 2 miles a day. So I am in pretty good physical shape for a CHFer. Didn't make quite enough difference, but it sure helps! Jack gets his exercise chasing around the farmyard menagerie he calls a household. Let's see, that is a parrot, at least 2 dogs, some chickens or geese or something else winged, several goats, a giraffe, and whatever lives in that pond in his backyard - I don't wanna know!
     It just goes to show, as Jack points out in his own way, that CHFers are unlikely to really be "cured." On the other hand, only 24 hours after raising my Coreg and Monopril doses, I feel much better and will probably be class one again in another 24 hours at this pace. So when our numbers improve to "normal" we may be able to "manage" our CHF.
     I strongly suggest a regular exercise program, continued low-sodium diet, never going off beta-blocker and ACE inhibitor meds, and I also personally believe in certain supplements for heart failure, including L-arginine, L-carnitine, taurine, magnesium, and creatine monohydrate. Jon.


Susan B, March 23, 2005 - Hello everyone, I just need to vent tonight. My husband has DCM. He has been doing very well. His EF went from 15 to 20% up to 50 to 60%. He was getting off his meds like amiodarone (off one year) and the blood thinner (6 weeks) and Lasix. His heart is now normal size (down 2 cm). It has been 1-1/2 years from the last cardioversion. His cardio doc was suggesting that he only come in once a year unless he was feeling bad or things changed. He was off so many meds that he even gave blood last week for the first time in 4 years (since he has been ill).
     This weekend we were on a little weekend get away with our exchange students, and I noticed that he was not quite right. I insisted that he go to the doctor's office today. Well, he is in a-fib. His doctor is on vacation so I am praying that the doctor that we will see tomorrow morning is half as good.
     I guess that we are just taking a step back. It is just that we were so hopeful at the last doctor's appointment and now, well, you have to stay on your toes or the CHF will bite you. This is a tricky illness. You would never know that my husband is ill by looking at him on most days.
     I have no idea why I am sitting here crying my eyes out. It could be that I did not see this coming. At least, I know the drill. I am so angry at my husband because he said he thought that he was in a-fib for a few weeks now, but he did not want to say anything. I will have to stay on my toes more. I have been ill with dental problems and not watching him as much as normal. Also, we have been moving my office, so he was under the radar.
     Well, we have packed his clothing and DVS and DVD player to take with him to the doctor's office so that he will have all of those things with him to check into the hospital if necessary. At least he has some new movies to watch. Thanks for a place to be safe in complaining. I hope you are feeling better soon, Jon. Susan B. gbratcher@kc.rr.com
 
Jon's note: Besides Porter, Bresnahan and Genton are good there Susan, as are some others. Let us know how it goes. Please note that in my post, meds changes brought me back around in short order. It's no guarantee for anyone else, but at least you know it is possible.


Hannah, March 23, 2005 - Hi Jon, Sorry, I gave the wrong e-mail address; it is rogerswife1234@yahoo.com. Also, I wanted to add that the cause of my husband's low ejection fraction is due to him having had a massive heart attack. rogerswife1234@yahoo.com


El R, March 23, 2005 - Hello, Yesterday I learned that the plan for me is to replace the lead on the left ventricle via a scope, thus giving me a BiV pacer (again). Since they are stitching it in place, this time it should work. Third time's the charm, right?
     It was explained to me that they hope this will improve the overall function of my heart and lessen the stress on my heart valves. They hope this will cut the regurgitation of my mitral valve in half and postpone having to do open heart surgery to fix the valve. I will call the surgeon's office to get a date set, and I have one question now. How long will this postpone the need to fix the valve?
     If we are talking a year, then okay but if it is less, there is a part of me that would rather just do it and get it over with. I am not willing to go into this sugery until I get this question answered to my satisfaction. elpiscado@aol.com


El R's March 23 reply to Davida S' March 20, 2005 - Hi, It turned out my doctor was saying ascites, not cirrhosis. It was not bleeding in the abdomen, it was fluid. Anyway, that part has cleared up. elpiscado@aol.com


Carla S' March 23 reply to Hannah J's March 22, 2005 - Hi Hannah, How did your husband find this out? Was he feeling bad or just having a routine checkup? I am 36 and I have viral cardiomyopathy and was diagnosed with an EF of 25% in January of 2004. Now, one year later, I'm up to 40%. I did have quite a bit of heart enlargement, which has now subsided tremendously. My docs are very optimistic for my future.
     With proper treatment, good meds, diet, exercise, etc,.., I'll be able to live a long and happy life. Our only drawback is that we don't have any children so we're traveling that road right now, weighing out the pros and cons. Make sure your husband is seeing a heart failure specialist who will check him out thoroughly. Please feel free to contact me if you have any questions. I know how scary this can be. The last year of my life has been awful but God has carried me through and He will be there for you and your husband as well. carla@cnbt.com


Barbara V, March 23, 2005 - Hi, I just wanted to let everyone know that I just came from my cardiologist and got the results from my latest thallium stress test. My EF has gone from 14% to 29%! He also said that parts of my heart that were not getting enough blood to them are now getting the supply it needs (thanks to going to Curves). My heart is still enlarged and he wants to raise my lisinopril dose to 20 mg per day and see if that helps. Overall, I was very pleased to hear this news. He told me not to let my blood pressure get below 90/40 or if I have problems with being dizzy and more tired than usual, to let him know. Any thoughts, Jon? tcbbarb@hotmail.com
 
Jon's note: I'm a big believer in target doses for ACE inhibitors. I take 40 mg fosinopril myself every day.


Danielle V, March 23, 2005 - Hi, I am looking for another person who has suffered and survived a ruptured sinus of valsalva aortic aneurysm. My loved ones and I need to talk to another person who can relate to everything we are going through. At the time of my operation, I also had a repair of an ASD and a VSD as well as another puncture hole during the operation - all at the age of 19.
     Please, if anyone has gone through the same thing, please let me and my loved ones know. We would be so happy to be able to relate to someone else. Thank you! danielleivilleneuve@hotmail.com


Chuck J's March 24 reply to Danielle V's March 23, 2005 - Hi Danielle, I recently had a left ventricular reduction myocardioplasty. Although it is not the same procedure you had, all in all it was a very risky procedure and requires a long rehabilitation. This surgery required removing an aneurysm from the left ventricle in addition to removing non-viable scar tissue. I am only 45 years old, suffer from heart failure, still have a ventricular septal aneurysm and on and on. I was at one time very physically fit and had a goal to attend an Eco-Challenge and am now medically retired awaiting on a decision from our wondrous Social Security system.
     If you keep a strong attitude and follow your practitioner's directions you can have a long and happy life. May I recommend getting a Lance Armstrong Live Strong wrist band?!
     At age 38 when I had my first heart attack, I was crying in the ICU on day two, my nurse came up and asked what was wrong, I told her my story and asked why me, as I always gave to others and helped everyone I could. She told me that God lets bad things happen to good people because we learn from them and find a way to help others. If he let the bad things happen to bad people they would take it out on others.
     Please feel free to e-mail me. My wife, son and I are are always available to help in any way we can. Take it slow and may God bless you. chfrancis@adelphia.net


Marty T, March 24, 2005 - Hello everyone, I don't post that often but I am a long-time lurker and love this site. It is a place of comfort and hope, and I pray it will continue to be here for all of us. My situation has been pretty hopeful. I am 44 years old with cardiomyopathy, LBBB, class one, playing racquetball 3 times a week. I almost died last August when they punctured a ventricle wall putting in my ICD. Pericardial tamponade is no fun!
     I've responded well to Coreg and Altace, and my EF is up from 25% to 40-45%. My issue right now is these stinking PVCs. It seems we're all told not to be concerned about them, but let's face it - having that shuddering feeling in your chest like a fish was just loosed in there is no fun, especially when you're trying to go to sleep! My PVCs seem to have multiplied five-fold over the past 4 to 6 weeks and I would appreciate some feedback.
     I've reached target dose on Coreg for about six months now, but they still have my ACE inhibitor at the minimal dose I started out on. Last week I had blood work done, which showed normal magnesium and potassium levels. I did raise my CoQ10 to 300 mg per day a few months back. Could that cause this? Any ideas would be appreciated. Thanks and God bless. Marty. marty.culleton@rs.af.mil


Hannah J's March 24 reply to Carla S' March 23, 2005 - Hi Carla, He found out because he had a follow-up echo. His heart attack was about 4 months ago. I don't think they expect the ejection fraction to improve very much because of the heart damage. I think they want to just keep it where it is. It is very hard since he is so young. rogerswife1234@yahoo.com


Richard A's March 24 reply to Jon's March 22, 2005 - Hi Jon, My cardiologist is emphatic about the potential benefits of Coreg in particular (I'm on 25mg twice a day) but has not expressed a terribly strong opinion about the importance, dosage, and differences among ACE inhibitors even though he has prescribed enalapril (Vasotec) 10 mg twice daily for me. My tolerance for all this so far seems reasonable and my blood pressure now runs around 125/75 average.
     Do you know of reasons why I might want to up the ACE dosage and perhaps switch to fosinopril? I know I may be fine tuning but I assume every little bit helps. Thanks! adamos@pacbell.net
 
Jon's note: See chfpatients.com/ace.htm. Fosinopril is a once a day med, which I like, and it is partly eliminated through the liver which reduces load on the kidneys (all this is also on the web page just mentioned).


Madeline D, March 24, 2005 - Hi, I just wanted to share some good news. I went back to the cardiologist EP doc today for my first echo since having a BiV pacemaker implanted in November. My EF at that time was 20% and heart size 5.9. Today, I am happy to say that my EF is 35% and heart size down to 5.6 cm. My doctor was thrilled and I am elated. Happy Easter to all. Madeline. mdaugherty@nc.rr.com


El R, March 24, 2005 - Hi, Yesterday my labs showed my BNP was back up from 265 the week before to 501 now. I have no clue what changed. My doctor is tinkering with my meds trying to get the fluid off my heart. I spoke with the surgeon's office yesterday and am now waiting for a date to be set for the planned surgery and for all my questions and requests to be met. I was told that one of the reasons for their wanting to only place the left lead now has to do with the risks. It may be that they do not want to do open heart surgery to fix the valve until they think I am more stable. I am still waiting for answers but seeing some progress being made in that regard. elpiscado@aol.com


El R's March 24 reply to Susan D's March 23, 2005 - Hi, I was told yesterday that things involving arm movement are not allowed, things like vacuuming and dusting (bummer <lol>) and yet they do want me to walk and use my bigger leg muscles. My husband and I compete with our dogs in agility trials and to my amazement I was told that yes, I can walk the course and walk it fast if I feel up to it. One of our dogs is in a trial for the next 3 days and I may try it, but I can't vacuum. Darn. I will surely miss that vaccuming. elpiscado@aol.com


Jon's March 24 reply to El R's March 24, 2005 - Hi El, Perhaps your individual situation is different from the "average" heart failure patient, and that's why you were told this. Please everyone, consult your heart failure specialist about proper exercise for you. My CHF doc was absolutely without mercy, insisting that I do all-body resistance training as well as cardio (treadmill). Other will fall in between these two plans. See chfpatients.com/faq/exercise.htm for more on exercise and heart failure. Upper body exercise is not only allowed but necessary to improve quality of life in most heart failure patients. Multiple clinical trials from the past 8 years support this. Jon.


Jody T, March 26, 2005 - Please help! My husband is supposed to be on a low-salt, low-fat diet. He hates fruits and vegetables. What can he eat to stay within his 2000 mg daily sodium rule? This is really causing an issue between us. Thank you. jlj4313@aol.com


El R, March 26, 2005 - Hi everyone, My treatment plan has evolved. Now the doctor is going to try to place the left lead intravenously first and if that fails, they will take me into surgery and do a thoracotomy. I will get to meet the surgeon doing that and the anesthesia doctor first. They do not want to replace the valve. They feel the biventricular will reduce the regurgitation enough to avoid having to do so. Part of that has to to with the shape I am in now, and the risks. Since my level of failure keeps fluctuating, I am willing to accept that plan. My doctor tells me that the research data has shown the biventricular pacemaker to be more beneficial than they first knew. I am set for April 26th. So now to get prepared for that, but how? elpiscado@aol.com


Donna V, March 26, 2005 - Hello Jon, I've postponed writing since your welcomed return. I had a biventricular pacemaker implanted in late November of 2004. I was terrified, then really impressed, and am now better. It was an amazing procedure although it was major surgery to me. My EF had dropped to single digits but is back up to 20%, and now I think better than that.
     The miserable leg pains have gone away as the oxygen flows better. My aching knees have nothing to do with my heart, just age. I'm not turning cartwheels yet but can tell so many improvements; little things mean a lot! My focus is a bit better as is my stamina. I'll know more in late April when I return to my CHF doc and get to do the Vo2max one more time (whoopee). Nuts to their numbers - I feel better.
     My 88 year old dad recently had a "mild" heart attack with resulting heart failure. I feel like a guru as we muddle though his meds and such. He already moves faster and better than I do but is "shocked" about his dragged-out state. He's always been very active. At least I can do more and am able to be of some help to him. I'm very much pro-BiV-pacer. I'd have been a noodle or dead without it by now. dmvditty@aol.com


Clara D's March 26 reply to Marty T's March 24, 2005 - Hi Marty, My PVCs disappeared shortly after I began taking 3000mg of fish oil daily. I've been taking that along with Coreg, Diovan, 150mg CoQ10, and a multi vitamin for about three years now. My diet is very low in sodium at 500 to 700mg daily. At my last checkup my BNP was 520 and my EF was still under 15%. The BNP surprised me. This was the first time we had checked it and I thought it would be lower.
     The good news is that I'm still class one and have never really been "in" heart failure. I don't have much energy left at night but I go strong all day. I walk a lot, garden, take care of my house and have no trouble keeping up with friends my age (72). I plan to increase the amount of CoQ10 I take when and if I begin to develop more heart failure symptoms.
     You might want to try the fish oil. From what I read, it's safer than eating fish! Keep a positive attitude. I'm convinced that staying relaxed and positive and involved helps your body stay compensated longer than it would otherwise. Good luck. Clara D. johndossett@nc.rr.com


Norma L's March 26 reply to El R's March 24, 2005 - Hi El, When I was diagnosed with CHF 2 years ago I had been working out at the gym times a week for 10 years. My doctor said I was to continue going to the gym. I do chest presses, arm pull downs, rows, etc,..., and all of the leg weight machines. I also walk as much as much as possible, weather permiting! I will be 82 in September and am doing very well.
     I have read where some doctors advise you not to do lifting and so on, but it has never seemed to hurt me. I miss it if I take time off and I get sluggish and lazy! Working out at the gym had kept me from getting nearly as bad as I could have been. I inherited some flaw from my dad that caused CHF when I got older. He died when he was 80, they didn't have the specialists and meds they have today to help us! nvl@pennswoods.net


Valerie R, March 26, 2005 - Hi, I have an off the wall theory that CHF causes digestive problems. I started off being irregular, then constipated, and then chronic burping, which led to an upper GI test. I was told I have acid reflux and was given Protonix. t seemed to work at first but I still would have burping at night. Then my throat became raw and my doctor has closed for Easter. I decided to try a diet switch and guess what? What research I've done shows that I must give up all the things I've become used to under low-sodium eating: Tomato and tomato products, pepper, citric fruits and juices, garlic, onion, and so on. This includes (shudder) coffee, tea, and chocolate! Any input would be appreciated. Val. vgrogers@aol.com
 
Jon's note: Do you have edema in your stomach? This fluid accumulation in the stomach lining can definitely cause digestive discomforts.


Cathy E, March 26, 2005 - Hi, I am looking for a CHF specialist in my area, which is West Caldwell, New Jersey. Can anyone recommend a good one? Thank you. Cathy. caradimitropoulo@yahoo.com


Carl S' March 26 reply to Robert M's March 20, 2005 - Hi Robert, I'm very sensitive to diuretics. My doctor gave me Demadex at first and I lost 10 pounds in 12 hours and started passing out all the time so he took me off it. Later he tried Dyazide, which he said was much milder but I felt sick to my stomach all the time like I had the flu, so I'm off diuretics entirely and have to watch my salt intake. I hope this helps.
     My problem is that my first cardiologist was a heart failure specialist that was listed on this site but he moved his practice and I don't seem to get the same sort of care from my new cardiologist, and even though my family doctor is great, sometimes I feel caught between different diagnoses. cslickjr@msn.com


Sabrina B, March 26, 2005 - Hi everyone, I'm really worried about my husband and not quite sure what to do. It seems we've had several long years. He had really bad angina for almost two years before finally having a triple bypass done in March of 2003. Since then he's had a-fib and it has taken quite a bit to get that under control. Something would work for awhile then they'd have to change his meds again.
     About 3 weeks ago he had to go to the hospital and found out he had a bad case of pneumonia, and they told us he now has CHF. The echo in the hospital showed his EF was 25% and one done 8 months earlier was 50%. Meds had to be changed all over again, because some of what he was on you can't take if you have CHF. We spent the first week out of the hospital worrying about his blood pressure bottoming out - it would go to 80/40 and for him that makes him feel really bad.
     They ended up taking him off the Lasix daily and just to take it as needed. Now his blood pressure is staying really high at 170-185 over 95-110, even with doubling his lopressor (100mg per day) and taking four times as much lisinopril (40mg per day). I have trouble getting hold of his doctors or the people at the CHF clinic. We don't want to keep going and spending hours and zillions of money we don't have going to the walk-in clinic or emergency room all the time. It's like nobody cares, even though they told me it was so important to keep his blood pressure on the lower side. We're not sleeping well, we're stressed out, and I don't know what to do. lavenderbliss@myfam.com


Jon's March 26 reply to Sabrina B's March 26, 2005 - Hi Sabrina, I'm sorry you're having such a yo-yo of a time with this. With high blood pressure - and his is definitely too high - Coreg may be a better choice than metoprolol. See chfpatients.com/coreg.htm. However, metoprolol tartrate like he takes can go as high as 400mg daily so a dose increase is definitely possible. I am surprised that he is not taking the approved form of metoprolol, which is metoprolol succinate, called Toprol-XL. It is taken only once a day and is FDA-approved for heart failure.
     If dehydration is a problem, perhaps he should be on a milder diuretic (a thiazide) and no fluid intake restriction. He could also take Lasix every other day if he has edema problems. Of course, if he doesn't retain fluid, he shouldn't take a diuretic.
     Does he still have some significantly blocked arteries, fast or irregular heart beat, or something else that raises his blood pressure? Does he stick to a strict low-sodium diet? Does he take any supplements for his heart failure, like creatine, L-carnitine, or taurine? Does he take a magnesium supplement? All these should be considered one way or another.
     Since he goes to a CHF clinic, would he get better call-back results with a different doctor within the same clinic? You are absolutely right that he needs to bring that blood pressure down. I hope others write with ideas! Jon.


Renee's March 26 reply to Jon's March 22, 2005 - Hi, I'm glad you were able to start this forum again. I learn so much from the posts. My husband was diagnosed in January of 2004 with DCM and CHF. His EF was 18% and in Augist of last year he had an ICD implanted. The docs were so concerned about sudden cardiac death. They started tests to get him on the heart transplant list. Now he has had an echo that says his EF is 45 to 50%. The doc can't believe this; he said he has never seen this improvement this fast (from August of 2004 to March of 2005).
     Frankie has a Social Security Disability case pending, which is going to court and he has a lawyer. The doc said not to notify anybody of this change until he can do more studies. The doc said that this will prevent the SSD approval and he'll have to go back to work.
     What you said about dropping after working is really bothering me. I'm so afraid that he will relapse if he goes back to work, and if the SSD case is dropped then later he gets bad again, we'll have to start all over. The doc also said he would be weaned off the drugs. He takes coreg 25 mg BID, amiodarone 200 mg, amiodarone (Cordarone) 25mg, and Lasix 40 mg. Can he safely come off these or some of these drugs? What is the precentage of people that relaspe?
     I'm so grateful my husband is better, but I'm so scared about what might happen. Like you said just because his EF is almost normal doesn't mean he's cured. He will always be a CHFer, won't he? I'm writing down questions for the doc when we go back. I would appreciate your opinion on this, and any questions you would ask. My donation will be sent the first of the month, it won't be much but hopefully it'll help a little! Thanks! reneew4103@aol.com


Jon's March 26 reply to Renee's March 26, 2005 - Hi Renee, This is a lot of ground to cover so I'll try not to get long-winded. There are no remotely accurate stats on recovered CHFers because it's a new phenomenon to the organizations who keep statistics; they always lag far behind reality "on the ground." The "better numbers don't relate to ability to function" tune is one I have been singing for almost 8 years and I still have problems getting even heart failure specialists to believe.
     The other side of the "numbers" coin is that better numbers often (not always) allow you to stick with an exercise program. If you exercise intelligently and regularly, you can improve your ability to function to some degree. How much depends on your own situation. I would never have made it this far without a Pit Bull attitude toward exercising every single day in one form or another. I would be seriously considering some supplementation if I were in your husband's shoes, including taurine, L-carnitine, magnesium, L-arginine, and creatine monohydrate. In my experience, it can really help.
     Regarding your husband's situation, first, with such a rapid recovery, your husband is certainly in much better physical shape than I was. It took 10 years for me to get from an EF of 13% to 55% so my body suffered a lot of damaging changes through that long stretch. This is in his favor!
     Partly, it also depends on his type of work. Although I do no heavy lifting at work, it is a very fast-paced job that involves constant - literally constant - lifting, twisting, bending, and always being on my feet. I get two 10-minute breaks and a 20-minute lunch break. I even have to flag someone off the floor to take over if I want to go to the restroom, so I must take a diuretic after work if I need one rather than in the morning. My whole day is fast, constant, work printing containers at a pace of up to 500 pieces per minute. If his work allows any rest or recovery/sitting time at all, he's in better shape than I am at present, believe me.
     I have no idea if he can come off amiodarone since I don't know why he takes it or what else he has tried for the problem involved. If he does not need Lasix for fluid, he should not take it. Unneeded diuretics make you very tired! I hope he takes a slow-release prescription potassium supplement with his diuretic. He should absolutely stay on Coreg. If his doc plans to take him off Coreg, you need to get a second opinion from a heart failure specialist before stopping the med. He should also be taking - and keep taking permanently - an ACE inhibitor.
     Questions to ask include: Shouldn't he stay on Coreg, per the official ACC/AHA heart failure treatment guidelines? Is there a safer option than amiodarone for that problem (whatever it is) with less side effect risk? How soon can his heart function be retested and by what method? Get that done and get a reading on all his heart valve function and heart size as well. What is his BNP? Is there any reason he cannot exercise, medically speaking? If he does exercise regularly, are there any specific restrictions for him per his doctor?
     I hope this helps some, at least. Honestly, I don't know why his doctor said not to mention the recent echo. You have to be honest or it will catch up with you somewhere down the line. Get another test done as soon as possible so you'll know if he was having a good day or if he really has had a marvelous heart function improvement. Jon.


Victor, March 26, 2005 - Hi, I found the Indian pharmacy www.realpharma.com some months ago to save money. Regards and health. victorrr@yahoo.com
 
Jon's note: Not an endorsement, just another post! I know nothing about this pharmacy service.


Tom W's March 26 reply to Jody T's March 26, 2005 - Hi Jody, Without your husband's cooperation, you will not get him to change his eating habits. Also, forget about changing over night the way he has eaten for years. If you do the cooking, then plan your weekly meals around the things he still enjoys. Slowly, reduce the sodium composition. Use no sodium added vegetables.
     Do add new spices, especially hot peppers as you slowly reduce the sodium in the meals. Add a new item (like broiled fish) every week or so. Now that summer is coming, try grilling fresh vegetables along with the meat out of doors. Try to get him to read The Manual so that he understands what he is facing with CHF. Often, when folks first find out they have CHF they are scared and angry. It is difficult to accomplish anything until they are willing to accept changes in order to strive for a fuller, longer life.
     It sounds like your husband is as stubborn as I am. The more my wife attempts to change something in my life the more resistant I become. Have A happy Easter. tew4515@yahoo.com


Jack D's March 26 reply to Valerie R's March 26, 2005 - Hi Valerie, Buy some Beano and use it before every meal. Unfortunately, a lot of these (to me bogus) diets recommend eating a lot of raw stuff and people aren't ruminants (that's like animals with three stomachs) so many people can't process stuff like that without the digestive assistance of Beano. maddjak@hotmail.com


Jack D's March 26 reply to Jody T's March 26, 2005 - Hi Jody, There is no help for someone who is unwilling to help themselves. You can either prepare all his food for him and remove all products from your home that contain salt, which in most houses will be most of the stuff in the cabinets and most of the spices besides black pepper, or just leave him alone. Nagging does nothing but cause rebellion. maddjak@hotmail.com


Anne Y's March 27 reply to Valerie R's March 26, 2005 - Hi Valerie, I think your theory on CHF and digestion might not be far off. Before my husband Bill had his LVAD implanted in August, he had horrible indigestion and gas/burping. My thoughts were lack of adequate blood flow to the stomach, but Jon's comment might be right on also. At this point Bill has no edema and is off diuretics with the exception of 25mg of Aldactone (spironolactone). amy412001@yahoo.com


Valerie R's March 27 reply to Jon's March 26, 2005 - Hi guys, Thanks for suggestion, Jack. I'll buy some Beano. Jon, I have a huge stomach! Yet, I'm on low, low sodium so I don't know if it's edema or not. I take a dieuretic twice a day. Val. vgrogers@aol.com


Jon's March 27 reply to Valerie R's March 27, 2005 - Hi Valerie, The only way to reduce already-present stomach edema is with IV diuretic, which can be done in the doctor's office. Since the stomach lining is partially blocked with all the extra fluid, pills will not absorb correctly and you won't get much benefit, if any. You have to bypass the swollen stomach lining by taking the diuretic by IV, which eliminates the fluid in your abdomen. After that, you have to really stay on top of your morning weights to make sure you take extra diuretic pills before your stomach fills with fluid again.
     I can't guarantee this is your problem but it is definitely possible. Ask you CHF doc for an in-office IV Lasix or IV Bumex session. Be sure to take extra prescription potassium beforehand. Jon.


Allan A, March 27, 2005 - Hi Everyone, First of all, I would like everyone who can make a donation to this web site to please do so. I couldn't give much but if all of us give a little, it will add up.
     I am a 47 year old male with CAD and CHF. In the last 4 years I have had several heart attacks, bypass surgery, 9, yes 9 stents since my bypass and an ICD implanted 6 months ago. My EF is 22% and I am currently getting Natrecor infusions weekly. My heart failure specialists just did another heart cath and found one of the main arteries to my heart 90% blocked. He said that it was between a stent and my heart and that he could not reach it to clean it out. He also thinks that another bypass surgery is too dangerous to try.
     My question is, has anyone had any experience with "angioprim?" It's all over the web but it sounds too good to be true to me. If you have any info on it I would really appreciate an e-mail. Thanks, Allan A.
     PS. This web site has been a blessing to me. Nowhere else shares the info that I've found here. Thanks Jon! adaskew04-mail@yahoo.com


Jon's March 27 reply to Allan A's March 27, 2005 - Hi Allan, I went to the product's web site and checked the ingredients. According to all that I know, this product will do nothing to clear any type of arterial blockages. Actual chelation can be effective for removing heavy metals from the body but actual chelation is a very time-consuming and expensive IV fluids procedure that can take a real toll on your body. I know because my mother has had real chelation treatment.
     This fluid just doesn't seem to be able to do anything at all from what I read on their site. Thanks for pointing me to the product though; now I know what's in it in case someone asks. The company also claims their product will fight osteoporosis caused by calcium loss at the same time it is reducing calcium-based plaque in your arteries. They also claim that low-fat diets cause heart disease, that cholesterol-lowering drugs cause carpal tunnel syndrome, and that taking calcium supplements can cause painful bone spurs in your feet in 3 days or less. Hey, maybe they're right but I sure don't see anything to back up their claims.
     About your situation, I just have to ask: Have you gotten a second opinion from a specialist not affiliated with the first doctor? No matter how good a doctor is or how much you trust him, when your health and life are at stake, always get a second opinion! Jon.


Andy B, March 27, 2005 - Hi everyone, I've got an embarrassing problem. Despite my religious adherence to a low sodium diet (I stay around 1200 mg a day, though there have been times I cheated and went up to 2000), I continue to have a problem with swelling in my groin area. To be specific, the genitalia. I do have swelling in other places like my ankles and my belly. My diuretics do not seem to have an impact. I may wake up with no swelling but by noon I'm on my way again to fully swollen genitalia, making walking uncomfortable and me a little irritable. And yes, it has a negative impact on my sex life, which is now fairly rare.
     The only time the swelling went totally away for any sustained period of time was during the month of February, when I left the cold northeast climate where I live and spent a month in the Phoenix area. I was on minimal diuretics while I was there, maintained the same diet I always have and had no swelling in my ankles, legs, groin or belly. I also breathed quite well for a change. On the flight home from Phoenix, I could feel the swelling set in and it really hasn't gone away since I've been back. Maybe one day, but that's it.
     Could climate have that strong of an impact on edema? Has anyone here successfully overcome a period of sustained swelling? In my case, it's been a problem since last August - eight months now. Thanks in advance for any help you can provide.
     I have a very low BNP and an EF of 50%, normal potassium and overall good numbers. No explanation shows up in any of the tests. buggz_dad@yahoo.com
 
Jon's note: Have you considered that the trip may have improved you for a reason unrelated to temperature? Altitude, diet, fluid intake, meds changes (you mention at least one meds change then), etc,..., ?


Margaret D, March 28, 2005 - Hi, I have been on amiodarone for two and a half years now at 200 mg per day. I have just found out that my EKG showed prolonged QT interval (650 with 560 corrected for heart rate) which can be a side effect of the drug. The cardiologist wants to hold the drug till the weekend and then take my dose down to 100 mg per day. Has anyone else had this problem with amiodarone and how was it approached? I did ask if I should or could see my EP doc. I am just very concerned about having more NSVT and SVT if I take a lower dose. Any ideas? mdavis10@tampabay.rr.com


Mike C's March 28 reply to Andy B's March 27, 2005 - Hi, You may have a hydrocele - a collection of watery fluid around the testicles. It is usually detected early in life but it can occur later. You might want to see a urologist. emike_c@hotmail


Beverly H, March 28, 2005 - Hello, Does anyone have a CHF specialist in the Tulsa, Oklahoma area that they are happy with and would recommend? Please contact my e-mail address with any info. Thanks. beverlyjanell@sbcglobal.net


Mike C, March 28, 2005 - Hi everyone, Does anyone know if any of the VA hospital/clinics prescribe Coreg (carvedilol)? I saw Dr. Silver in Illinois and he said that the (Heinz) VA by him prescribed it but my cardiologist from the same regional VA said they didn't have it in their formulary. emike_c@hotmail


Julian S, March 29, 2005 - Hello all, I have CHF and apparently have a more serious form than I thought. My doctor's nurse called today and said I should go on Coreg twice a day. Since I have asthma I called the nurse and she asked the doctor about a conflict. She called back and said there was no conflict! However, from the info on your site it appears there is. Can you clarify please? Thanks. Julian. jrs100@juno.com


Jon's March 29 reply to Julian S' March 29, 2005 - Hi Julian, Yes, there is a conflict. According to the manufacturer's prescription insert for Coreg:

"CONTRAINDICATIONS: Coreg is contraindicated in patients with bronchial asthma (two cases of death from status asthmaticus have been reported in patients receiving single doses of Coreg) or related bronchospastic conditions, second- or third-degree AV block, sick sinus syndrome or severe bradycardia (unless a permanent pacemaker is in place), or in patients with cardiogenic shock or who have decompensated heart failure requiring the use of intravenous inotropic therapy. ... Patients with bronchospastic disease should, in general, not receive beta-blockers. Coreg may be used with caution, however, in patients who do not respond to, or cannot tolerate, other antihypertensive agents. It is prudent, if Coreg (carvedilol) is used, to use the smallest effective dose, so that inhibition of endogenous or exogenous beta-agonists is minimized.
     In clinical trials of patients with congestive heart failure, patients with bronchospastic disease were enrolled if they did not require oral or inhaled medication to treat their bronchospastic disease. In such patients, it is recommended that carvedilol be used with caution. The dosing recommendations should be followed closely and the dose should be lowered if any evidence of bronchospasm is observed during up-titration."

Jon.


Chuck F's March 29 reply to Mike C's March 28, 2005 - Hi Mike, Yes, the VA does prescribe, and prefers carvedilol (Coreg). I am in the VA system for CHF and other problems. Just a little atta boy here. I have been in the health care field for over twenty years, have worked all over the world and I would put Ann Arbor, Michigan's VA (particularly the cardiology department and thoracic surgery department) up against any in the world. chfrancis@adelphia.net


Lisa P, March 29, 2005 - Hi, I'm a 33-year-old woman who was just diagnosed with a right bundle branch block. I was diagnosed at the local urgent care center where I'd gone due to heart palpitations, which are apparently unrelated to the RBBB. I have an appointment with a cardiologist in a couple of weeks, the soonest they could get me in, ugh.
     I am totally clueless about this. What is this going to mean to me? How is my life going to change? What causes this? Is it progressive? A sign of some bigger problem? Thanks for your help. edkela@hotmail.com


Tunny G's March 29 reply to Mike C's March 28, 2005 - Hi Mike, Yes, the doctors at the VA in Baton Rouge and New Orleans prescribe Coreg (carvedilol). tunnyg@yahoo.com


Johnny Q, March 29, 2005 - Hi everyone, I am caught between the devil of a falling EF and the deep blue sea of increased arthritic pain in my knees and feet limiting my mobility and my ability to walk at age 70. My EF has fallen 10 points to below 50%, my energy level is slipping, and afternoon naps have become a must, just to keep going. My doc's advice is "exercise more." After the onset of angina attacks, TSIs and arthroscopic knee surgery, I settled into a routine a couple of years ago of non-fat foods plus five-day-a-week 90-minute home workouts that include stationary bike but it's not getting the job done. I would appreciate hearing from others in a similar situation who have any thoughts. jhq4@juno.com
 
Jon's note: Weight training is usually prescribed for arthitis in the knees - it has really helped mine. However, I have not had knee surgery so I don't know what is best for you. I do know that resistance training of some kind can greatly improve quality of life for those with heart failure who can do it.


Anita S' March 29 reply to Mike C's March 28, 2005 - Hi Mike, My husband gets his Coreg from the VA clinic in Columbus, Ohio. He used to get it from the VA hospital in Cincinnati, so at least some of the VA hospitals have it. Some of his medications come from Chicago, so maybe you should call the VA pharmacy yourself and ask them. I hope you can get it. Take care. dreamersila@netscape.net


Scott Brown's March 29 reply to Valerie R's March 26, 2005 - Hi Valerie, I think your observations about CHF and digestion are interesting. Prior to my CHF symptoms, I never had heartburn or acid reflux. Since I was diagnosed, I went through several months of what appeared to be acid reflux - very painful, almost unbearable - so bad I went to the hospital once. I suspect some of the medications contribute toward these conditions. Do you happen to take Slow-K to help boost your potassium levels? If I don't eat lots of food with Slow-K, I get really bad "gut rot." I get the same result if I take too much at one time.
     Assuming you have had CHF for awhile, and you have eaten the same diet for awhile, my first inclination is to look at what is different (rather than things which have been the same for awhile). Good luck in your pursuit of truth! Scott Brown. kitchenerguy@rogers.com


Cathy D, March 30, 2005 - Hi everyone, I was bummed about Easter this year. It didn't make any sense to fix a ham for just me and the kids, when my husband wouldn't be able to eat a bite. So I offered to make a turkey or a roast, but my daughter beat me to it and said, let's have a shrimp boil! Huh?
     My husband bought a bunch of fresh, never frozen shrimp which we boiled in no-salt crab boil and I fixed all the usual Easter trimmings - low salt potato salad (7 potatos, dill weed, pepper, a stalk of celery, 2 T mayo), green beans (fresh beans, low salt butter), fresh apples and grapes, salad with homemade ginger dressing (24mg sodium per T), pinto beans and deviled eggs (the only "normal" food we had and my daughter just licked the side of one egg, <g>).
     I can honestly say that after a year of eating low sodium, we didn't even miss the salt! I can't believe it. In fact, my daughter made a face when she tasted the "normal" deviled eggs because they were too salty (they had dill pickles in them). My husband had a great holiday meal without blowing up like a balloon and being sick the next day. Hurrah! georgecd@worldnet.att.net


Michael K, March 30, 2005 - Hi all, My wife (age 29) was just diagnosed with CHF. I am extremely concerned because for the past 4 months she has been misdiagnosed with asthma and been treated with your typical stimulant-based inhalors taken twice per day. Does anyone know if there is any information available on what effect this may have on the prognosis for the CHF? mikkan@netcarrier.com


Dale E, March 30, 2005 - Hi everybody, I posted a couple of weeks back and I wanted to give everyone some follow up information to see what everyone thinks. My dad went into the hospital Sunday because of fluid retention and not being able to flush it out. He still cannot sleep and he has trouble concentrating, among other things. Today the doctor told us he thinks he has also developed liver cirrohis. I guess his liver bilirubin count is high, plus he has a number of the other symptoms. I guess if we find out this is the case, hopefully they can slow the progression down and give us some time with him where he feels good.
     Has anyone experienced this from fluid retention causing liver cirrohis? Does anyone have any idea of life expectancy? This has been one of the worst days of this process. I can't help but think if my dad had been properly diagnosed when he had the original symptoms of CHF and someone had taken the proper steps to treating it, we would not be in this situation. Nothing can be changed now.
     Make sure everyone who has CHF - that you are checking liver function as often as possible. God bless. When peace like a river attendeth my way and sorrows like sea billows roll, whatever my lot thou hast taught me to say it is well, it is well with my soul. homecapitaldale@hotmail.com


Donna H's March 30 reply to Mike C's March 28, 2005 - Hi Mike, My husband had a bout of CHF and had to go to an non-VA emergency room. While in that hospital, he was prescribed Coreg. He had been treated for CHF for two years prior to this at a VA hospital and had never had a prescription for Coreg but when he went back to the VA, they began prescribing carvedilol and he has now been on it for about 3 years. herdrich@grm.net


Jon, March 31, 2005 - Hi everybody, I want to thank all of you who donated in March to CHFpatients.com, Inc.! If donations continue every month at the same pace, I can keep this old web site going. :-) As many asked, here is a monthly reminder to donate if you are able and desire to do so. Just go to chfpatients.com/about.htm and choose your option.
     We haven't received any donations in the last week, so I assume everyone hits it around the first of the month, thus the reminder as a new month begins. Jon.


Sandy's March 31 reply to Cathy D's March 30, 2005 - Congratulations Cathy, To your wonderful family and all their love for Dad! It sounds like you all had a great Easter. bleuskiiisgrl@yahoo.com


Jacky B, March 31, 2005 - Hi, Can anyone tell me where I can find the most recent statistics on prognosis for heart failure? I questioned an article quoted in a post on another board, which stated the prognosis was five years after diagnosis and have heard from a nursing student who says this is what her text book says and she assumed the five year mark was correct. Her text book also says Coreg is not a first line drug for HF, which surprised me and makes no mention of bi-ventricular pacers! Any thoughts? Jacky. jackymwb@earthlink.net


Jon's March 31 reply to Jacky B's March 31, 2005 - Hi Jacky, Well, now you've done it - you've pushed on of Jon's buttons! First - with no disrespect intended to nurses, don't listen to nursing students - ever. Heart failure is so complex that it requires a cardiologist who specializes in it to get it right, so what chance does a nursing student have of being on the mark?
     Second, see the following post for why the 5-year statistic is pathetically inaccurate: chfpatients.com/archives/archive8-2001a.htm#Jon8-2replyDonC8-2. (Let it load to go to the exact post) If someone wants to argue with that post, send them my way. <g> Don't forget to use The Archives search page - it's a very good resource for these kinds of questions!
     Third, Coreg (or Toprol-XL) is the front-line drug for heart failure today, period, hands down. Any text that says otherwise is a piece of junk. Again, if anyone wants to argue that, send them my way.
     Finally, stats for CHF are pretty much meaningless. CHFers break down into ischemic, non-ischemic, systolic failure, diastolic failure, with diabetes, without diabetes, with permanent heart damage, with no permanent heart damage, with leaky valves, without leaky valves, and on and on forever. Thus, what holds true for one CHFer may be meaningless for another. With that said, general principles apply across the board as far as treatment, but as to prognosis, it is highly individual and must be seen as such to be meaningfully applied to your situation.
     Prognosis is better than ever. For an encouraging trend, see www.chfpatients.com/heartbytes.htm#mortality_improved Jon.


Peggy Y, March 31, 2005 - Hello, My husband is scheduled on April 18 for an a-fib pulmonary vein isolation ablation, due to severe a-fib caused by DCM and CHF back in November of 2000. He is doing great with the DCM and CHF, but the a-fib is ruining our life! He had an EP Study (ablation) in December because of a high heart rate and they told us that possibly this could take care of his a-fib, but it didn't.
     I would like to know if anyone that comes to this site has had one, and if it worked. My husband is a little apprehensive about having it, but really looks forward to getting rid of the a-fib if this procedure works! Any comments would be greatly appreciated! Peggy. Ryoungangora4683@aol.com
 
Jon's note: Don't forget that on the links page are several that lead to ablation/Maze procedure/a-fib message boards.


Jennifer G, March 31, 2005 - Hello Everyone, I have a general question regarding Coreg. I landed in the hospital over Valentine's weekend with my first episode of pneumonia, which really turned out to be pulmonary edema due to cardiomyopathy. I have always had an irregular heartbeat, but it was worse after I was discharged. My internist found it, put me on a holter monitor and sent me off to my cardiologist, who then prescribed Coreg at 3.125 mg twice a day. I've now doubled that dose and am doing well.
     I read The Manual and understand how the damaged heart muscle leads to excess fluid retention and why I was struggling with day to day activities. What I thought I understood, but have trouble explaining to my family, is why Coreg makes me out of breath and unable to run or keep up like I used to. They associate those symptoms with heart failure, (which my grandfather is currently hospitalized with) but I'm having trouble explaining two things:
     1) Why I have the same struggles as my granddad, although I am 37 and he is 88. (2) Why Coreg makes me so tired, makes my muscles fatigued, etc. My cardiologist takes it personally when I ask questions, as if I don't trust him and couldn't possibly understand his explanation. My family is confused and I don't know how to explain it to them. I am also having chest pains and upper stomach pains when I overdo it.
     I asked my cardiologist, who told me that I didn't need to pay attention to chest pains because I do not have arterial blockages and will not have a heart attack. Can anyone help explain the chest pains and why the cure seems to be as bad right now as the disease? Thanks so much everyone. This site is truly a godsend.
     I guess it might help you to know what else I'm taking in addition to Coreg. That would be Lasix, Lanoxin, Diovan, potassium, Pepcid and a multi-mineral tablet. I don't take Lanoxin within two hours of calcium, and I take the Lasix on an empty stomache. All others are taken with a meal. jennifer@doublegates.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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