The paperwork never ends The Archives
November 16-31, 2004 Archive Index CHFpatients.com

Robert 11-16     seek diabetic experiences & more
 
Bill's 11-16 reply to Pen's 11-11     the same happens to me
 
Richard's 11-16 reply to Jon's 11-15     some more questions
 
Jon's 11-16 reply to Richard's 11-16     coping
 
Donna H's 11-16 reply to Richard's 11-15     living a long time with heart failure
 
Jon 11-16     will be down for awhile
 
Jon 11-19     I'm back
 
Steve 11-20     doctors and symptoms questions
 
Jon's 11-20 reply to Steve's 11-20     I hope others have ideas
 
Marie H 11-20     does anyone get too hot easily?
 
Patricia's 11-20 reply to Steve's 11-20     getting the right doctor experience
 
Steve's 11-20 reply to Jon's 11-20     some more info
 
Susan's 11-22 reply to Scott's 11-11     plus seeking ideas
 
Bill 11-22     cardiac rehab and fatigue
 
Jon's 11-22 reply to Bill's 11-22     exercise, heart failure, and recovery
 
Donna B 11-22     seek CHF doc in Buffalo, New York
 
Eric 11-22     seek hope or suggestions
 
Sandy's 11-22 reply to Steve's 11-20     fatigue, getting too hot & more
 
Roger H's 11-22 reply to Steve's 11-20     getting the right doctor
 
Valerie R 11-22     seek bloating solutions
 
Robert 11-22     seek Michigan heart failure doctor
 
Tony P 11-22     seek experiences with liver problems & tests
 
Patricia Fox 11-22     seek patients for research interview
 
Jon 11-23     vitamin E study comments
 
Mary Anne Meredith's 11-23 reply to Steve's 11-20     expecting too much
 
Jon's 11-23 reply to Mary Anne Meredith's 11-23     expecting too much
 
Carol Neuhart 11-23     what are end-stage symptoms?
 
Kathy H 11-23     seek CHF doc near Rochester, New York & more
 
Oliver 11-23     strange hormonal-type feeling?
 
Tom C 11-23     cardiac contractility modulation
 
Donna H 11-24     chest pain questions
 
Scott Brown's 11-24 reply to Kathy H's 11-23     exercise can really help
 
Sherri 11-24     what about pneumonia shots?
 
Pam S' 11-24 reply to Carol Neuhart's 11-23     hospice
 
Sandy's 11-24 reply to Jon's 11-23     vitamin E study
 
Crystal's 11-25 reply to Sherri's 11-24     pneumonia vaccination experience
 
Chuck's 11-25 reply to Robert's 11-22     CHF doctor suggestion
 
Chuck's 11-25 reply to Sherri's 11-24     pneumonia shot
 
Donna V 11-25     pacemaker experience
 
Myron H 11-26     intro, could stress be the cause?
 
Sandy's 11-26 reply to Donna V's 11-25     congratulations on success
 
Donna B 11-27     supplement & doctor questions
 
Jon's 11-27 reply to Donna B's 11-27     supplement & doctor questions
 
Peter 11-27     blood pressure and pulse questions
 
Jon's 11-27 reply to Peter's 11-27     blood pressure and heart rate
 
Peter's 11-27 reply to Crystal's 11-15     Aldactone (spironolactone)
 
Jon's 11-27 reply to Peter's 11-27     Aldactone (spironolactone)
 
Tonya 11-27     am scared - seek others in the same boat
 
Bill's 11-27 reply to Tonya's 11-27     we know how you feel
 
Sandy's 11-27 reply to Tonya's 11-27     we know how you feel
 
James 11-29     seek advice on cold & flu remedies
 
Will 11-29     seek Inspra experiences
 
Peter's 11-29 reply to Jon's 11-27     thanks for the info
 
Maria Hall 11-29     what will happen to him now?
 
Joy 11-29     had cath, update
 
Robert 11-29     have some more questions
 
Myron H 11-30     seek Toprol-XL experiences - foot numbness also
 
Paul's 11-30 reply to James' 11-29     cold remedies
 
Terry's 11-30     blood pressure and Coreg
 
Jon's 11-30 reply to Terry's 11-30     blood pressure and Coreg
 
Wayne 11-30     blood pressure and Coreg
 
Jon's 11-30 reply to Wayne's 11-30     blood pressure and Coreg
 
Jan 11-30     scary awakening - anyone else?
 
Ann L's 11-30 reply to James' 11-29     cold medicine questions
 
Annie G's 11-30 reply to Robert's 11-29     to work or not to work
 
Sherri 11-30     antibiotics question
 


Robert, November 16, 2004 - Hello, This is my first time posting to this site. Thank you Jon, for all your information. I am a 34 year old type 2 diabetic, married with an 8 month old son and a child on the way. I recently had an echo and my primary care physician informed me that I have CHF, specifically systolic CHF. I attempted to e-mail some of those listed on the Me Too section but I only received one response. Thanks again, Jana!
     I am having a hard time dealing with this. I was wondering if I could ask a number of questions. You could either respond here or e-mail me with longer answers. I am currently making my way through The Manual so if I ask a question that has been answered previously, please forgive me. Here goes:

  1. What are some questions I should ask the cardiologist for my initial consult? I go on Wednesday.
  2. How does diet impact this disease other than salt and fluid restrictions? I am attempting a vegetable based diet recommended by Dr. Joel Fuhrman called Eat To Live (www.drfuhrman.com)
  3. What is the average life expectancy for this disease?
  4. How long can one work with this disease? I am a social worker.
  5. Are there any heart failure patients here in their 30s who suffer from type 2 diabetes? How is your treatment as a diabetic different than the typical CHF patient?
  6. Is this disease usually passed on genetically from parent to child?
  7. What physical limitations can I expect? What exercises are best for CHF patients?

I would appreciate any and all replies. Thank you. winnt21@yahoo.com


Bill's November 16 reply to Pen's November 11, 2004 - Hi Pen, The same thing happens to me when I get a little rattled, it's like my mind is going in 10 directions at once. It leaves me tired and confused. I have to rest for awhile, then I am okay, so I guess it is normal for us. bj5250@yahoo.com


Richard's November 16 reply to Jon's November 15, 2004 - Thanks heaps, Jon. It helps a lot. When you mean fatigue improves, do you mean fatigue increases with the medication? The target dose prescribed would be to get her blood pressure within a certain range - is that how it works? Or is it a case of hit the target dose regardless of how they are doing? She feels sick on the enalapril at the moment but is coping. Would increasing that make her more sick? Mentally, at the moment she hates the thought that she needs to be on all these drugs? God is helping us through and it is no coincindence I found it, for this site helps me a great deal. Thanks again, Jon. indyj1910@hotmail.com


Jon's November 16 reply to Richard's November 16, 2004 - Hi Richard, With each dose increase, symptoms will get worse, but then as the body adapts to the meds and as the meds improve the "behind the scenes" hormonal processes that drive heart failure, fatigue lessens. By the time the body adapts to target dose, fatigue is generally much reduced. Blood pressure really has nothing to do with ACE inhibitor and beta-blocker dose unless too-low blood pressure brings dose increases to a halt. As the target dose page says, "The target dose is the dose which gave the most proven benefit in clinical trials." Those benefits are explained at the ACE inhibitor, Coreg, and beta-blocker pages.
     None of us like taking lots of pills. However, the reasons for taking each med should be evaluated between an educated CHFer and his heart failure specialist, then the target dose should be set for that patient, then the process of trying to get to that target dose begins. Life style changes and keeping the attitude that this is the way to improved health further motivate us to stick with the program. Look at me - 10 years down the road, I am finally able to reduce doses and even eliminate some meds entirely. The start of this road is rough but don't forget what you want the end of the road to be and work always toward that. :-) Jon.


Donna H's November 16 reply to Richard's November 15, 2004 - Hello Richard, Today a woman came in to my office whose husband recently died with heart failure. He lived for 24 years after being diagnosed. She said his doctors (the same practice that Jon uses) told her that he has lived with heart failure longer than any other case they had heard about. herdrich@grm.net


Jon, November 16, 2004 - Hi everyone, Well, I am going to downgrade my desktop computer back to Windows ME and go back to the old, slower graphics card. Every time I install a new piece of hardware or a new device of any kind, my broadband connection bites the dust permanently. My antique HTML editor also does not play well with Win XP. No amount of tech support or Restore/Repair/Reinstall helps. If my daughter were here there would be a chance but I can't wait for her to get home.
     Since I can't successfully run this web site on a dial-up connection, I'll be reformatting my system and reinstalling everything - again. I hope to be back by Monday, November 22nd.
     I now know that the only real fix for all this is a new desktop since my hardware is so tired that it won't handle any upgrades at all anymore - kind of like me! <lol> However, that is a financial impossibility so I'll make do - I'm actually pretty good at it. <g> See ya soon, Jon.


Jon, November 19, 2004 - Hi everybody, I'm back. Windows ME is a pain but it is easier to set up. <g> Jon.


Steve, November 20, 2004 - Welcome back Jon, We missed you. Well, I'm wondering if anyone should change doctors when they have one of the best in the nation. I'm going to. He doesn't seem to listen to me as I tell him of my daily struggles with fatigue. My EF just improved from 20% to 30% and he said "see you in 6 months." He believes my limited activity level is something other than my cardiomyopathy. I take great care with my diet, especially sodium and fluid. I still can only tolerate about 2 hours of activity (on my feet). I get tired, begin yawning, get confused, and feel like I can't take another step. Anyone else feeling like this? shpdwcopa@msn.com


Jon's November 20 reply to November 20, 2004 - Hi Steve, Well, you pushed my button! <g> I really don't care what a doctor's reputation is, if he isn't on the ball in my opinion, he's not a good doctor for me. Besides, medical personnel often don't say what's actually on their mind, so a doctor's reputation "inside the community" (medical community) might not be quite what you think it is.
     How's your blood sugar? Blood pressure? Do you exercise and if so, what kind and how much? These all play into your symptoms on top of your heart failure, which is the most likely culprit, doctor's opinion or not. Jon.


Marie H, November 20, 2004 - Hello everyone, I would like to know if anyone has a problem with getting hot. It seems to be connected with my swollen ankles and legs. The more the swelling, the more heat I get. I have had to lower temperatures of my dish water and my shower in order to keep from getting too hot. Any sort of exercise makes me hot within a few minutes. Does anyone know what causes this? I have been diagnosed with cardiomyopathy. mghayton@yahoo.com


Patricia's November 20 reply to Steve's November 20, 2004 - Hi Steve, Like Jon, this really pushed my button. I fired my first cardiologist for the same reason. He simply would not believe my fatigue and SOB continued unimproved despite optimum medical regime, and my EF had not even improved (it remained at 20%).
     I took Jon's advice and found a heart failure specialist, who modified my meds, had an EP study done and as a result I had a CRT pacemaker/ICD put it 2 weeks ago today. Voila! I can breathe much better, stay awake all day, my hands and feet are warm for the first time in 2 years, my mind is clear, and while I'll not run any races soon, my energy level is much improved.
     While this may not be the appropriate treatment for you, I would encourage anyone to find a specialist who listens to you and agressively works to find a solution for you. mello.out@comcast.net


Steve's November 20 reply to Jon's November 20, 2004 - Hi, My blood sugar is good. My blood pressure was great all summer, but has gone high in the last month. The doc just increased my Altace and said to call if I needed to (really interested, huh?). This week I've felt bad. I think it's a combo of the Altace and high blood pressure. I went through cardiac rehab this summer. Some days I couldn't complete the regime. I almost always needed to rest for several hours after the exercise. I haven't been very active since that and I know, I've got to get back on the program. When I'm fatigued I yawn, get weak in the legs, and generally feel like I'm going to fall if I don't sit down. Sometimes I slur my speech. Others have said they have similar experiences. I have my SSD hearing in early December. I think my doc won't be much help there. shpdwcopa@msn.com


Susan's November 22 reply to Scott's November 11, 2004 - Hi Scott, I am so sorry to hear about the loss of your mother to a PE (pulmonary embolism). I imagine it was a shock. I lost my 44 year old brother to PE on 10-04-2004. He died very suddenly at work and the paramedics were unable to revive him en route to the hospital or once there. It is painful and sad to lose someone you love. My heart goes out to you.
     A cath update: Some may remember that I was scheduled for a cardiac cath to rule out CAD and rule in that my DCM is from chemotherapy. So, after dealing with the shock of losing my brother I was pretty anxious to get my cardiac cath that was scheduled for 10-15 completed. So was my cardiologist, especially after hearing about my brother's sudden death. I went through the procedure without any medication. That was my doc's idea and he did the procedure very quickly. I got the impression he wanted to get in and out quickly, in order to minimize stressing my heart.
     The good news is that my arteries are clear! My doc says we are dealing with "plain old cardiomyopathy." The bittersweetness of it all is my declining ejection fraction and increasing heart failure symptoms, especially SOB upon exertion, increased heart rate, fatigue, and periodic weight gains. I went back on Lasix and potassium, and that seems to have helped some. I am on 8 different heart meds and pretty much at max dosages.
     My husband, who is an intensive cardiac care nurse, and I starting to think the meds are not working as well as they were when I first went into heart failure in 02/2004. I return to my cardiologist on 11-29. Does anyone have any feedback on what questions to ask him and what have others experienced in regard to their heart medications becoming less effective?
     Sometimes I wonder if I am headed for a heart transplant and if doing so would even be possible, since I had invasive breast cancer within the last year. I know God will see me through with whatever comes next. Thanks for any feedback you all might have to offer. Susan. flobirfly@hotmail.com


Bill, November 22, 2004 - Hi everybody, I've gone through cardic rehab phase 2 and now I'm in phase 3. The thing is, I get through the exercise alright but I begin to run down very quickly afterward. Even though I have improved my tolerance for exercise, the fatigue factor seems to be a lot worse than when I started. I would like your thoughts and suggestions, thanks. bj5250@yahoo.com


Jon's November 22 reply to Bill's November 22, 2004 - Hi Bill, Heart failure patients require more recovery time than others. You sound like you're overtraining. You need 3 days off and then you need to reduce your workout intensity or duration; or you need to change your workout. I go into this on the new exercise pages, which I work on every week and hope to put online around Christmas. Jon.


Donna B, November 22, 2004 - Hi all, My internist told me I have high blood pressure and put me on Triam/HCTZ 37.5mg once a day as a diuretic on 11-03-2004. He also sent me for an echo. I saw him yesterday and he said my blood pressure was back in control at 128/86 but he wants me to go for a stress test as the echo showed thickness in my heart walls. He said the echo showed I've had high blood pressure for awhile and since I don't know my father's health history, he wants the stress test.
     I also have asthma so when he asked me if I was short of breath when exercisng I'm not sure if it's due to the asthma or heart problems. He said the stress test will determine if I need additional treatments. He also wants me on a low sodium diet. I don't add salt to my diet, but I didn't realize how much salt is already in food. He wanted me to read the label on everything I bought so I would start to realize how much sodium is in the regular food we eat. I also recently started Weight Watchers as I need to lose about 40 lbs. I'm really trying, but this is hard, and scary.
     I live in Buffalo, New York and would appreciate it if anyone can give me the name of a board certified CHF doctor and if we have any CHF clinics in my area. I am so glad I found this web site, but it's going to take me some time to understand all of it. Donalee318@aol.com


Eric, November 22, 2004 - Hello, My mother is 77 years old and last Sunday was admitted to the hospital, complaining of breathing difficulty. Previously she'd had a pacemaker installed and she had COPD, high blood pressure and high cholesterol. She was a drinker and took sleep medication, too.
     She has been in the hospital for a week now and doesn't open her eyes. She developed pneumonia, which is being treated with an antibiotic drip and she is also being fed dopamine and ativan. Without the heart-lung machine, we are told she will die. She also has a hole in her heart and tomorrow is scheduled for an echocardiogram. Any hope or input here? jaz1126@yahoo.com


Sandy's November 22 reply to Steve's November 20, 2004 - Yes, I get tired so fast and as Marie H said, I get hot also. I will finially get my pacemaker implanted in early December. Patricia, I'm so happy to hear of your success with the pacemaker. I'm looking forward to a bit of improvement myself! I just love this board and Jon, thank you for all your work keeping it afloat. bleuskiiisgrl@yahoo.com


Roger H's November 22 reply to Steve's November 20, 2004 - Hi, I'm right along with Jon in that the doctor may have a good name but if he's not doing the job, fire him. With me on my last surgery, I got up to 25mg Coreg twice a day after about 3 months. Right after that, he said you seem to know what you're doing and if you have any more heart problems, just give me a call - you know where I'm at - no check-ups or nothing! He just set me at the curb! By the way, it is good to have you back, Jon. rkharmony@highstream.net


Valerie R, November 22, 2004 - Hi everybody, I found it sad that Elizabeth Taylor has both a crippling spinal disease and congestive heart failure. She is 72 years old. I wish she could find Jon's site! I'm developing what I believe to be caused by all the medicine I'm taking: Burping, gas, and bloating. I'm taking Protonix but it seems to help only a little. I am also having extreme irregularity, which doesn't help the bloating. Any suggestions would be welcome. Just don't tell me to eat prunes and fruit. That's my husband's solution and I've started to sprout! vgrogers@aol.com
 
Jon's note: Cut down on carb intake some, especially those with a high glycemic index (fruit often makes it worse). It really helps gas. However, finding the cause is the only way to address it long-term.


Robert, November 22, 2004 - Hello Jon! Hello everyone! I really appreciated the e-mails I received in the last week. I was wondering, can someone in the metro Detroit area give me the name of a CHF specialist that is good and that you really like? Does anyone have any experience with cardiologists with Michigan Heart? They're affiliated with St. Joseph's in Ann Arbor. Also, does anyone know any good heart failure doctors at the University of Michigan in Ann Arbor?
     Lastly, what is everyone's opinion on heart catheterizations? The cardiologist I went to see last week wants me to get one done, although the dye used could damage my kidneys. I go to see the nephrologist today to get their opinion prior to the procedure. Are there any other tests I could take that are non-invasive? Any and all reponses would be greatly appreciated! winnt21@yahoo.com


Tony P, November 22, 2004 - Hello everyone, I haven't posted in awhile. I have IDCM with an EF of 20% and have just been told that my liver count is up. The doctor does not believe it's my meds so I'll be going for a sonogram soon. Does anyone know about this?
     I would like to wish Jon and everyone else on this great site a happy Thanksgiving and thank goodness we're all still here. aparascandala@si.rr.com


Patricia Fox, November 22, 2004 - Dear CHFers, The Leede Group is a market research firm located in Plymouth (Minneapolis) Minnesota. We are currently conducting a research study on behalf of a major heart device manufacturer. On December 6th through December 9th of 2004, we are doing interviews with heart failure patients. The interview would take 90 minutes and you would be paid $75 for your time. There are no sales involved in this research study.
     You would be testing a device that is designed to monitor weight and blood pressure at home. It's very important that we talk with as many heart failure patients as possible. Please contact us at 763-595-5870. We would have a few additional questions in order to determine your eligibility and we would be happy to answer any questions. Thanks, Patricia Fox, Research Manager for The Leede Group. pfox@leederesearch.com


Jon, November 23, 2004 - Hi everyone, Well, I still haven't finished reading the full-text of the recent vitamin E study that so many readers have asked me about. However, I have read a large chunk of it. I'll give my thoughts on it briefly here. If anyone disagrees, feel free to rebut, since I haven't read the whole thing and may misstate something. Keep in mind that these are my personal opinions and I am not a doctor. For what it's worth, my wife takes 400 IU of natural vitamin E and when she asked me if she should keep taking it, I said yes.
     The study - it was not a trial - showed only that doses of synthetic vitamin E over 400 IU might increase "all-cause" mortality. The study notes that most high-dose trials which it examined were quite small and included only seriously ill patients, making conclusions hard to draw for any other patient populations. Some of the included studies in this analysis also used vitamin E in multi-vitamin and also in vitamin/mineral formulations, muddying the waters considerably.
     This study only examined all-cause mortality, so it is very unclear whether vitamin E supplements had anything at all to do with specific deaths, meaning that this study is in my opinion of very little value. If a person in a trial died in a car wreck, his death counted "against" vitamin E because all-cause mortality was used.
     Many people, including myself, believe that the wrong form of vitamin E was studied. On a supplement label, natural vitamin E is listed as d-alpha tocopherol, d-alpha tocopheryl acetate, or d-alpha tocopheryl succinate. Synthetic forms of vitamin E (which were used in the recent study) are labeled with a dl- prefix. The natural or d- prefix forms are superior in every way, in my opinion. The best type to take is an all natural form that uses at least the 3 natural types mentioned above, at a 400 IU daily dose, in my opinion.
     If you take a blood thinner (anti-coagulant) like warfarin (Coumadin), ask your doctor before taking any supplement, including vitamin E. I hope this helps some of the wondering about this study. Also, vitamin E should usually be kept in your refrigerator. Jon.


Mary Anne Meredith's November 23 reply to Steve's November 20, 2004 - Hi, I think it's unrealistic to expect a great deal of attention from your doctor. We're not relatives, we're customers. You have to go by how you feel and not by how he says you feel. Granted, I would not stay with a doctor that I feel is inept, but remember that the first in the class and the last in the class are both called doctor! mameredith@nauticom.net


Jon's November 23 reply to Mary Anne Meredith's November 23, 2004 - Hi Mary Anne, I agree completely that as CHFers, we must trust our own assessment of our situation. We need to partner with our health care providers, not be run by them. In an aside to Steve, a doctor who says to call when you have a problem may not be so bad - as long as he answers your calls.
     On the rest, I disagree. Your very life and your quality of life are largely in your doctor's hands when you have heart failure. He should know this. With that understood, how can any doctor not be willing to go the extra mile with every patient every time?
     If a doctor overbooks appointments so he doesn't have enough time to spend with them, he's not the doctor for me either. My own CHF doc visits usually require a 60 to 90 minute wait because he takes as much time with each patient as the patient needs. It's worth the wait to me because I know that I will also get however much time and care I believe I need when he does get to me. This is a standing "joke" at his clinic, which has over 40 cardiologists. When their practice in general decided that a 20 minute visit was what should be expected, my doctor simply refused to comply. He does whatever it takes in his view to provide best possible care.
     The fact that poor doctors do practice medicine - as you point out - is a very good reason to demand a lot from your doctor. That way, you quickly learn just how good his skills, judgment and commitment to patient care are. Jon.


Carol Neuhart, November 23, 2004 - Hello everyone, I recently moved my mother in with me. She is in class 4 of CHF. They wanted to put her on Hospice but I am just not ready for that. Does anyone know the end-stage symptoms of her disease when death is near? I don't know whether to call in family members or wait. Thanks. cneuhart@visteon.com
 
Jon's note: Shouldn't hospice be your mother's choice - not yours? Symptoms are the same as listed in The Manual but worse (more intense) and they keep getting worse.


Kathy H, November 23, 2004 - Hi all, This talk about fatigue continuing despite following the diet and medication guidelines has me wondering too. My EF is still 35%. I follow the diet, take my meds, chase a toddler every day, and I don't feel better. The cardio doc thinks it's not heart related, yet asthma treatment isn't making any difference. My BNP is fine, my blood work is fine, my electrolytes are fine. I will be starting Humira for rheumatiod arthritis soon and I'm wondering if that will help the fatigue.
     At any rate, does anyone have the name of a CHF specialist in Rochester or Buffalo, New York? kathy_in_wlsv@verizon.net


Oliver, November 23, 2004 - Hi everybody, I have had a strange adrenaline feeling. I have an enlarged heart and get this strange feeling, above all during the night (especially early morning), where I feel as if I'm having an adrenaline rush and butterflies in my stomach. It causes my legs to twitch and I have to tense my muscles and move around to relieve it. It doesn't really settle down till I'm up and leaves me feeling very tired in the mornings. I also get it to some extent through the day. I know heart failure raises norepinephrine levels and wonder if that could be related, even though my test for catecholamines was normal (pheo test) and my BNP is normal. Exercise seems to calm it down. Has anyone else experienced anything similar and is there anything that can be done about it? granfun101@yahoo.com
 
Jon's note: This sounds a lot like RLS (restless legs syndrome).


Tom C, November 23, 2004 - Hi all, Last Thursday I had a new device implanted to treat my heart failure called the Optimizer II. It's manufactured by Impulse Dynamics. It delivers an electrical impulse - non-excitatory, not a pacemaker - timed to the refractory phase of the heart beat. The electrical impulse affects the amount of calcium in the heart's cells, which increases the contractility of each cell and thus increases the strength of the heartbeat. This is called cardiac contractility modulation. Over time, it's supposed to improve heart failure symptoms.
     This is a clinical trial. The device has been through safety trials in Europe and appears to help improve in how people feel as well as in EF and other measures. I will be tested at least monthly during the trial, to last a year or more. They implanted the device, which is flatter but longer than my ICD and checked it out to see that it is working, then shut it off.
     On December 1st I go in and I will be randomized, with my device either turned on or not turned on, and I will not know which. If it is turned on, I will need to have a new one put in after 6 months because the battery will be running out by then. Later models are supposed to have rechargeable batteries. Since being diagnosed with IDCM in March of 2003, I have not improved despite medication. I feel worse now than I did in the summer of 2003. I am seeing a heart failure specialist at Virginia Commonwealth University Medical Center. Several other hospitals are taking part in the study but I don't know where they are. Impulse Dynamics has a web site at www.impulse-dynamics.com. tomcam333@comcast.net
 
Jon's note: I have a trial summary on this but it's very technical. If anyone wants a copy, e-mail me.


Donna H, November 24, 2004 - Hello, After a rough summer and several close calls with my husband's health, the preliminary transplant tests are over and he has been scheduled for a final evaluation in December in Virginia. We really don't know what to expect other than we will be there for a week and possibly longer. He isn't scheduled to see his cardiologist or his regular doctor until after we get back but has been noticing some extra chest pain the past few days.
     Does stress contribute to chest pain? He says he always has some chest pain and he doesn't feel like this is anything to worry about. Is that normal for other CHFers? He is 100% dependent on his pacemaker and also has an ICD. herdrich@grm.net


Scott Brown's November 24 reply to Kathy H's November 23, 2004 - Hi Kathy, Aside from chasing a toddler, do you have a regular exercise routine worked out? If not, I would work out with your cardiologist the amount of exercise you can safely do. If you "tune up" your body, you can really do a lot to make your body do more with less. As a younger (35 years old) CHF victim, exercise has been the key to living a relatively normal life since diagnosis 4 years ago for me. If I miss more than a week of exercise, I start to slip back down the slippery slope of fatigue. I am not under the illusion that exercise if the answer for everyone, but in conjuction with meds, it does wonders for me. Take care, Scott B. kitchenerguy@rogers.com


Sherri, November 24, 2004 - Hi Jon, I was wondering if you or anyone knows about, or has had, a pneumococcal pneumonia shot. It is supposed to protect against one of the common types of bacteria that can cause pneumonia. I have never heard about it before but read one should take it if you have a chronic illness (i.e. heart failure). Any thoughts? Thanks. email_src@yahoo.ca
 
Jon's note: I have one every 5 years.


Pam S' November 24 reply to Carol Neuhart's November 23, 2004 - Hi Carol and e-friends, As a long-time Hospice volunteer, I feel obliged to encourage you to seek support from Hospice as soon as possible. Hospice is most effective when they partner with the patient and family early. Because many people equate Hospice with death, they wait until it's too late for Hospice to provide the best care possible. If the doctors are recommending Hospice, it's time to give them a call.
     Hospice is meant to give loving comfort care, preserve dignity, and provide support and education throughout the dying process that we all face. The non-profit hospice that I am associated with says, "Hospice is committed to: Quality of life as opposed to the length of life; treatment of the patient, not the disease; alleviation of pain, not curative treatment; the family as the "unit of care," not simply the patient; 24 hour-a-day, 7 day-a-week available help from the hospice interdisciplinary team; and the provision of bereavement care to families and loved ones after a loss."
     I have observed hospice first-hand both as a family member and volunteer. God granted me a gift that enables me to be present as patients transition from this life to the next. I am so grateful for each hospice experience and encourage everyone to access this service as they approach the end of their journey on Earth. Death is frightening because it's the unknown. Hospice has the resources to address questions from both patients and family members. They can provide guidance and insight that makes the process more bearable. Hospice helps us accept the path we're on and makes the journey more comfortable.
     It is never too early to call, get the packet of materials, and ask questions. Call more than one hospice because services do vary, and some are for-profit while others are not-for-profit. I do hope this is helpful. pam_smallwood@yahoo.com


Sandy's November 24 reply to Jon's November 23, 2004 - Hi Jon, About vitamin E, my cardiologist said to keep taking it, and that the study was inconclusive. bleuskiiisgrl@yahoo.com


Crystal's November 25 reply to Sherri's November 24, 2004 - Hi Sherri, I got one last year (pneumonia vaccination). My doc told me to get one every 3 years. I had never heard of them before then. schramuno@sssnet.com


Chuck's November 25 reply to Robert's November 22, 2004 - Hello Robert, I go to the VA at Ann Arbor and see Dr. Vaitkevicius. He is also with the University of Michigan and is known for his expertise in heart failure, and he saved my life. See www2.med.umich.edu/pcdv2/index.cfm?fuseaction=provider.profile&individual_id=28427&um_department=Internal%20Medicine (get it all - it's long). The whole cardiology crew at both Ann Arbor and the university are top notch. Having been a nurse for 20 years all over the world I can truly attest to that. chfrancis@adelphia.net


Chuck's November 25 reply to Sherri's November 24, 2004 - Hi Sherri, This is a very important vaccine for anyone with a chronic illness or for a geriatric to receive. This helps to protect you against 23 different strains of pneumococcal pneumonia. Many physicians recommend a new one every 6 or 7 years, some of your older physicians will only recommend one in your lifetime. chfrancis@adelphia.net


Donna V, November 25, 2004 - Hi Jon snd everyone, As many of you know, I was most apprehensive about going to MUSC in Charleston, South Carolina and getting a BiV pacemaker and having an EP study done. I had the electrical study Monday, the implant yesterday, and am home.
     The whole procedure was amazing. I saw my EKG this morning and it looked nothing like my erratic earlier ones. The docs seem very pleased and especially encouraged about the placement of that third lead. I'm just a little sore and tired. I'm accustomed to being tired so this is nothing. I'm excited and waiting for that third lead and the whole thing to heal and kick in to keep me going with more energy and improvement. I even look forward to the follow-ups in the next few months. I just wanted to share my personal Thanksgiving. Donna V. dmvditty@aol.com


Myron H, November 26, 2004 - Hello, I am new to the board. I have been recently diagnosed with DCM. My EF is 30 to 35%. I have an enlarged left ventricle which is now at 7cm. I still don't have any symptoms. How did I find out? About 3 weeks ago I was painting the fence for 8 hours and when I came inside and put my feet up, I felt dizzy. I got up and and fainted for about 6 seconds, then I woke up on my own.
     I went to the hospital where an echo and stress test were done. The results of the echo came back positive for DCM. I had never heard of DCM before. When I came back to find out more about DCM on the Internet, I became quite alarmed and scared. However, many of my findings have revealed a good number of people with DCM can go on to live normal lives.
     I am currently on 100mg of Toprol-XL and 5mg of Altace. I am able to exercise without any feelings of shortness of breath. One occurance I do get is an occasional rapid heart beat. My doctors are monitoring this with a holter monitor. I often wonder how did this happen to me? I do think stress played a big part in it. You see, about 6 months ago my wife was diagnosed with cancer of the cervix and since has had 2 major surgeries including a hysterectomy. In between the surgeries my father passed away from Parkinson's desease at the age of 76. Could this be the reason why my heart has weakened? Dmiick@optonline.net


Sandy's November 26 reply to Donna V's November 25, 2004 - Hi Donna, Congratulations on the success with your pacemaker. I will have an ICD implanted on the 6th of December and your post has sure helped me, while I wait to have it done. Good luck to you! bleuskiiisgrl@yahoo.com


Donna B, November 27, 2004 - Hello, I've read your articles on supplements and would like to know: If you take taurine, do you also need to take CoQ10? Also, is it recommended to take L-carnitine, L-arginine, L-propionylcarnitine along with a regular multivitamin on a daily basis? What is the dose for L-arginine? What is the difference between a CHF doctor and a cardiologist? Donalee318@aol.com


Jon's November 27 reply to Donna B's November 27, 2004 - Hi Donna, Anyone who takes a statin cholesterol-lowering drug should take CoQ10. Also, anyone who is newly diagnosed with heart failure should take it for a year to see if it helps. It is my belief that CoQ10 helps anyone with low bodily levels of it and those are the groups most likely to be low.
     I have been unable to find a viable source for PLC, which really rags me, since it seems to be a near-ideal supplement for CHFers. I believe all CHFers should take L-carnitine daily; I take it 3 times a day with meals. L-arginine doses in trials are high: nine grams per day has been shown to increase exercise capacity in CHFers in one recent trial. I believe taurine and L-carnitine to be the most important amino acids for CHFers to take (I take both).
     A heart failure specialist is a cardiologist whose practice consists of at least 51% heart failure patients - he is a cardiologist who "specializes" in treating CHFers. Jon.


Peter, November 27, 2004 - Hi all, Neither from Jon's site nor from my doctors, can I get a good feel of what is a reasonable range on the low end of blood pressure and pulse rate for a CHFer? For example, I am zapping up from 6.25mg BID of Coreg to 12.5mg BID and am led to expect a lowering of blood pressure until I hopefully adjust. Fine, but how low is low? I was 85/50 this evening, and in the mornings am more like 105/60. I find if the top line is under 100 to 110, I feel very weak. My EF is 39% based on a recent MUGA test. Does anybody else check their blood pressure regularly or have comments? PeterSperl@cs.com


Jon's November 27 reply to Peter's November 27, 2004 - Hi Peter, A heart rate lower than 55 beats per minute is too low and should be addressed by your heart failure specialist. There is not really a "too-low" blood pressure range as far as I know. I went many months with blood pressure too low to be read even by my own CHF doc - and he is a fanatic about physical exam so he is very good at taking these kinds of readings himself. The low end of blood pressure is such an individual thing that like heart failure, you should go by how you feel more than by the numbers. My CHF doc wants my blood pressure roughly in the 100 over 70 area. Jon.


Peter's November 27 reply to Crystal's November 15, 2004 - Hi Crystal, You said your doc had taken you off Aldactone (spironolactone) and that you were feeling dizzy, etc. I can't comment on this, but have a couple of other observations. You said you had an EF of 35% and I suspect the doc took you off because the studies only show up to that point that the medication helps more severe cases. (Right, Jon?) I have a slightly better EF at 39% and it might interest you to know that my cardiologist begged me to stay on spironolactone at 25mg, even though I was complaining of volume depletion due to this and Lasix. Apparently it is not just a diuretic, but counters some of the other stuff going on with CHF. PeterSperl@cs.com


Jon's November 27 reply to Peter's November 27, 2004 - Hi Peter, Everyone should read the RALES results at www.chfpatients.com/meds_old.htm#aldactone2. At 25mg, spironolactone is not a diuretic - the dose is too low to have a noticeable effect on most people. At 25mg, it does reduce risk of death in heart failure patients, reduce risk of hospitalization, improve heart failure symptoms, reduces collagen buildup that harms the heart, and has other beneficial effects as well.
     While correct in a narrow sense to only prescribe spironolactone for patients in class 3 or class 4 CHF, it is certainly not out of line to consider using this or Inspra (eplerenone) in other CHFers as well. Each person should talk this over with their doctor. Inspra does have fewer side effects, for what it's worth. Jon.


Tonya, November 27, 2004 - Hello, My name is Tonya. I am 23 years old and just found out in June of this year that I have CHF and dilated cardiomyopathy. I'm not sure how to handle it yet, and as of now life is very scary. I have heart disease, take blood thinners, have low thyroid, and problems with insulin. I am scared and just want someone who understands to talk with. If anyone is out there, please help? XPrincessWoo411X@wmconnect.com


Bill's November 27 reply to Tonya's November 27, 2004 - Hi Tonya, I also have heart failure, DCM and a-fib. All of us understand how you feel. It is very scary when someone tells you your heart is not working right. I'm 54 years old and I was scared to to death when I was told. I thought for sure each second was my last. Yes, we all understand. Just hang in there and you will start to feel better when you see it's not the end, only a new beginning. Good luck - you will be okay. bj5250@yahoo.com


Sandy's November 27 reply to Tonya's November 27, 2004 - Hi Tonya, I'm so glad you found this board. I'm sorry you're going through all that you are, but being so young, you have a lot of productive years ahead of you. At the beginning, yes, you will be confused and afraid so don't think it's the end of the world. Just the words "heart failure" are enough to scare you. I'm in my first year of diagnosis myself and have passed the "thinking I'm going to die" stage. It does get better once you understand this illness so never give in to it! Follow the instructions given by your doctor and the help you find on this board. Read the entire site and ask a lot of questions, change your diet and take your meds regularly. Best wishes to you. bleuskiiisgrl@yahoo.com


James, November 29, 2004 - Hi everyone, Cold and flu season has hit with a vengeance. I've been nursing the cold from Hades for 2 days now. The only really bad part though is the sinus problems. Between my regular sinusitis, CHF, and now the cold symptoms, I wonder how I can breathe at all. <g> Before my CHF diagnosis a few years back, I took pseudophedrine. It was the one thing that always did the trick. Nyquil and Drixoral were my friends. Of course, those meds are out the door now for obvious reasons.
     My doctors like to recommend Benadryl but I'm finding limited to no success with it. Claritin, Zyrtec, and Allegra have all been tried as well. These are fine for seasonal allergy type uses but not very useful for colds. Dimetapp and Robitussin have their uses as well but have proven relatively ineffective for me on the sinus front for the same reasons. Guaifenesin (in elixirs or otherwise) is not applicable for obvious reasons.
     I wanted to hit the board members up on what their docs are recommending and what they've had good success with to treat cold and flu symptoms both over the counter and home remedies. Thanks! jnj@spamcop.net


Will, November 29, 2004 - Hello, I started using Inspra 3 months ago and I'm having higher blood pressure readings. Has anyone else had this same reaction? I told my doctor about my readings and he told me I had a choice: Continue to take Inspra and expect longer life span or quit taking Inspra and suffer the consequences. Needless to say I'm still on Inspra, but I'm looking for a new doctor. stelco@eatel.net
 
Jon's note: If you take Coreg, be aware that over time, Coreg raises blood pressure in most CHFers. It may not be the Inspra. Timing can be coincidental.


Peter's November 29 reply to Jon's November 27, 2004 - Hi Jon, Regarding spironolactone at the 25mg level, thanks for clarifying that the medication is less for diuretic puposes than for other reasons. This is the same conclusion as my New York cardiologist, but you explained it. Thanks for the tip about Inspra. I am seeing my Florida cardiologist this week and will ask him about it. If I pick up any interesting observation, I will share it on this site. PeterSperl@cs.com


Maria Hall, November 29, 2004 - Hello, My ex-husband and close friend since I was 18 and still good friend, father of my precious 4 year old son, was hospitalized last night and they are saying congestive heart failure. He's only 36. What does this mean for him? I think I am more scared than he is, or than at least he sounded on the phone. What does he face? What will happen when he's released from the hospital?
     He has hypertension and diabetes. He is in good shape otherwise and is not overweight. Will he need help when he goes home? Now I am scared of him being there alone. They still don't know if he has had a heart attack somewhere back down the line and they are testing for this - he has a cath tomorrow. His symptoms started Friday but he didn't go to a hospital till Saturday.
     Thanks! Maria. regattacrew68@yahoo.com


Joy, November 29, 2004 - Hello Jon and all you great people, I have not dropped in for awhile and so tonight I have been reading a big catch-up. I have had my cardiac cath and it was not as scary as they had prepared me to think. Sure, I felt extra tired for two or three days afterwards but I have great news: My coronary arteries are okay. The doc very surprised but delighted. The focus now goes on to the pulmonary artery and the lungs. I am well into the sleep study and have a CPAP machine at home on trial as part of the study. It's a bit of a contraption but the extra air and deeper breathing at night is certainly helping my wellbeing and mental energy. My very good wishes to you all. Joy from New Zealand. farrell-kelly@xtra.co.nz


Robert, November 29, 2004 - Thanks everyone who replied to my post! Thanks again Jon, for this site. I still have some questions. What is the opinion of everyone about working? My doctors didn't mention anything and I would like to work as long as possible. My EF is 25%.
     Does anyone have any detailed information on CHF and exercise? Jon, I know you're putting together something but I was wondering if someone knew some books or web sites that explain in detail types of aerobic or weight training exercise I should or should not do. I appreciate any information you can give me.
     Also, can someone tell me what are the special considerations or differences between an older CHF patient and a younger CHF patient (age 45 and below)? How about between a non-diabetic CHFer and a diabetic CHFer? Thanks. winnt21@yahoo.com


Myron H, November 30, 2004 - Hello, First of all I would like to thank Jon for this web site. This web site truly allows all of us to take in valuable pieces of info from everyone who makes a post. By reviewing everyone's comments, it gives all of us a better understanding of how to battle this condition. I was diagnosed with IDCM 4 weeks ago. I am taking 100mg Toprol-XL and 5mg Altace. I currently have no symptoms aside from sometimes having a rapid heart beat.
     I want to know if I should be switched to Coreg? My EF is 30 to 35% with an enlarged LV to the tune of 7cm. Has anyone had success with Toprol-XL? I also would like to know if anyone has had a problem with their feet sometimes getting numb? Thank you all. Dmiick@optonline.net


Paul's November 30 reply to James' November 29, 2004 - Hi James, I've had good luck with using Vick's Vap-o-Rub for temporary relief of a cold. Since I've been taking meds for heart failure, I've tried falling back on the good "old-time" remedies, from before the chemists got involved: Vap-o-Rub, breathing warm steam, and slippery elm lozenges for scratchy throat. They are far from perfect, but a lot better than I expected they would be. Chicken soup and warm tea with honey and lemon are good too, for boosting morale if nothing else. therealpauld@netscape.net


Terry, November 30, 2004 - Hi Jon, I noticed that you stated that over time Coreg raises the blood pressure of most heart failure patients. I wonder if my cardiologist realizes this as he has changed me from Nomodyne, (labetalol) to Coreg recently. As I stated before, my blood pressure gets extremely high at times and I'm wondering now if Coreg is wrong for me? tarkus@att.net


Jon's November 30 reply to Terry's November 30, 2004 - Hi Terry, I doubt that many cardiologists realize this, or would believe it. However, I believe it to be true. It happens gradually over years so it is not readily apparent. I doubt that this is a significant problem since it is a relatively small rise over a period of years. Also, keep in mind that it could be another issue just more often seen in Coreg patients for some reason.
     Regardless, Coreg's overall benefits well outweigh this issue in my view. Keep in mind that Coreg will still most likely keep your blood pressure lower than other beta-blockers due to its alpha blocking action. Whether other beta-blockers also cause blood pressure rise or whether beta-blocker patients with heart failure experience this for another reason over a period of years, no one knows, to my knowledge.
     Have you tried adding hydralazine to your meds to lower blood pressure? Hydralazine has no rebound effect if you need to stop it for some reason, so you might talk it over with your heart doc. Jon.


Wayne, November 30, 2004 - Hi Jon, Your comment that "If you take Coreg, be aware that over time, Coreg raises blood pressure in most CHFers" was a real surprise to me. I thought that I had read everything about Coreg. If it reduces heart rate and afterload, how can that happen? Is it a consistent result, or only occasional? Thanks, Wayne. whreos@earthlink.net


Jon's November 30 reply to Wayne's November 30, 2004 - Hi Wayne, To elaborate is to just wildly guess, but here goes. <g> It may be that the improved heart function caused by Coreg use over time may be the actual culprit that raises blood pressure - a heart pumping more forcefully can result in higher blood pressure. That's not a bad thing. ;-)
     It could be something else entirely though, I have no way to know. I mean, it could be something as simple as the physical deconditioning often seen in CHFers who coincidentally also take a beta-blocker. It's impossible to know without rigorous research.
     This is a trend only recently noticed by extremely on-the-ball heart failure specialists who track their patients' medical progress on in-office computer databases. No published research exists on the topic as far as I know. Jon.


Jan, November 30, 2004 - Hello everyone, I have been sound asleep and was awakened by my heart beating like I had run a marathon. My head was also hurting so badly that I could hardly see. I have migraines and waking with headaches is normal for me. However, the rapid heart beat is something that has never happened. Actually, it happened 2 times that same night. I was wondering if anyone else has experienced this and if so, what their input is. jan_cobb2003@yahoo.com
 
Jon's note: Have you ever had a sleep study to check your breathing while asleep?


Ann L's November 30 reply to James' November 29, 2004 - Hi James, Regarding cold meds, I have not yet had a cold, much less the flu. When you list stuff and say "for obvious reasons," you lost me. What are the guidelines? Is there a list we should know about? annlau@davtv.com


Annie G's November 30 reply to Robert's November 29, 2004 - Hi Robert, One special concern is that you may be trying to get another 40 years out of a worn-out heart. Be thankful you're not 20 and trying to get 60 years out of it! As the loved one of someone diagnosed at age 46 and who has diabetes, I sometime think that we have to be stricter with all the restrictions in order to get everything we can out of that spongy heart.
     On the other hand, being younger means you are much more likely to get appropriate treatment and not have your symptoms blown off as "part of getting older." Being younger means you will also most likely reap the benefit of the aggressive research that is now being done on heart failure. The diet is a little more restrictive when you add diabetes to the mix, but not as bad as you would think - it just takes a bit more planning.
     Family issues are different if you have children still dependent on you living at home. It's hard having a family that you can't be active with, but you have to figure out ways to be there in other ways for them. Work issues are different for everyone. Often, how your work disability insurance works is a big issue. If you start missing time, will it affect disability payments when you need them? Is every last bit of your energy going into your work, leaving nothing for your family?
     Stopping work is not always permanent. My husband was off work for 2-1/2 years and has been back in his old job 3-1/2 years. Can you still do your job to your boss' and your satisfaction? Being under 45 means early retirement is usually out of the question. Does work prevent you from doing cardiac rehab? Lots of things to think about. nuffanne@netscape.net


Sherri, November 30, 2004 - Hi, Thanks very much for the replies I received for my post about the pneumonia vaccination. On that same note, I was wondering about prescription antibiotics for CHFers suffering from things like bronchitis. The drug the doc gave us (levaquin) had warnings about QT prolongation, but when we asked if it was okay to take with heart failure, he said the fact that we (i.e. Dad) had a pacemaker makes it okay. I guess I was kind of confused by the whole conversation. Does this seem okay? email_src@yahoo.ca


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

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