The paperwork never ends The Archives
May 1-15, 2002 Archive Index CHFpatients.com

Lonnie 5-1     seek others with improved EF but not energetic
 
Susie O 5-1     font size too small
 
Jon's 5-1 reply to Susie O's 5-1     easy to fix - try this
 
Mel G 5-1     seek advice when having flu with CHF
 
Tracey C 5-1     question about Vo2max numbers
 
Jon's 5-1 reply to Tracey C's 5-1     Vo2max numbers and scores
 
Jim L 5-1     dry mouth remedies
 
Joe S 5-1     update, prayer request
 
Jon 5-1     posts
 
Ben B's 5-2 reply to Tracey C's 5-1     Vo2max
 
Jon's 5-2 reply to Ben B's 5-2     Vo2max & more
 
Karen F's 5-2 reply to Susie O's 5-1     font size adjustment trick
 
Chuck C's 5-2 reply to Mike H's 5-1     weird back pain experience
 
John Rice 5-2     seek pacemaker & ablation experiences
 
Scott Brown's 5-2 reply to Jon's 4-30     foot and ankle pain experience
 
Scott Brown's 5-2 reply to Mel G's 5-1     coping with viral illnesses
 
Derald G's 5-2 reply to Joe S' 5-1     coping with colds and flu, and more
 
Dee L 5-2     coping with dry mouth
 
Rosemary 5-2     intro, questions
 
Stephanie's 5-4 reply to Mel G's 5-1     it's good to call your doc
 
Mel G's 5-4 reply to Mike H's 4-30     back pain
 
Raya 5-4     good news update & more
 
Lori K 5-4     sleep apnea & cardiomyopathy questions
 
Jon 5-4     posts
 
Jon 5-6     updates
 
Ben B's 5-6 reply to Jon's 5-2     Vo2max
 
Jon's 5-6 reply to Ben B's 5-6     heart tests in general
 
Pat M's 5-6 reply to Mike's 4-30     back pain, numbness in hand - question
 
Lonnie's 5-6 reply to John Rice's 5-2     RFA (ablation) experience
 
Karen K's 5-6 reply to Rosemary's 5-2     exercise and attitude
 
Cathleen's 5-6 reply to Jon's 5-4     hydralazine question
 
Jon's 5-6 reply to Cathleen's 5-6     hydralazine experience
 
Craig A's 5-6 reply to Lori's 5-4     sleep apnea experience and more
 
Betty 5-6     seek thyroid & heart failure experiences
 
Sharon P's 5- 6 reply to Tracey C's 5-1     Vo2max experience
 
Harry 5-6     ICD questions
 
Joanne 5-6     high diastolic pressure question
 
Samantha B 5-6     seek Vo2max scores
 
Diana H 5-6     seek CHF info sources
 
Lou H 5-6     voice & vocal cords problems
 
Jon's 5-6 reply to Lou H's 5-6     voice & vocal cords problems
 
Janet T B 5-6     PVCs questions & more
 
Jon's 5- 6reply to Janet T B's 5-6     PVCs and fatigue
 
Scott Brown's 5-7 reply to Rosemary's 5-2     exercise
 
Brian M 5-7     air conditioning questions
 
Jon's 5-7 reply to Brian M's 5-7     thanks, update
 
Mel G's 5-7 reply to Betty's 5-6     thyroid disease and heart failure, update
 
Ruthie A's 5- 7reply to Diana H's 5-6     medical terminology, update, insomnia, stress
 
Nancy S' 5- 7 reply to Lou H's 5-6     hoarseness, voice problems
 
Joyce 5-7     seek shoulder pain experiences
 
Joseph P 5-7     checking for drug interactions - an url
 
Joe S' 5-7 reply to Jon's 5-6     fluid retention & more
 
Nadine's 5-7 reply to Betty's 5-6     thyroid disease and heart failure
 
Duane C's 5-7 reply to Jon's 4-30     foot and leg pain experience
 
Jon 5-8     page updates, birthday gifts & more
 
Lou 5-8     thanks, updates - good news
 
Tom S' 5-8 reply to Lou's 5-6     hoarseness, update
 
Jan 5-8     seek weight control/edema control experiences
 
Katherine H 5-8     seek arrhythmia experiences
 
Jon's 5-8 reply to Katherine H's 5-8     arrhythmia experiences, question
 
Janet H's 5-8 reply to Diana H's 5-6     book suggestion
 
Cathleen 5-8     thanks for info
 
Peggy 5-8     seek Tikosyn (dofetilide) experiences
 
Jon's 5-8 reply to Peggy's 5-8     some Tikosyn (dofetilide) info resources
 
Ben B 5-8     my dad died, prayer request
 
Stephanie 5-9     my doctor blew me off - am very upset
 
Karen F 5-9     good update, CHF docs, patient knowledge
 
Vee's 5-9 reply to Jan's 5-8     prednisone, asthma & CHF, and more
 
Doris 5-9     foot pain and shingles
 
Dan H 5-9     getting ICD tomorrow
 
Nancy S' 5-9 reply to Ben B's 5-8     condolences
 
Janet T B 5-11     PVCs questions
 
Jon's 5-11 reply to Janet T B's 5-11     PVCs and terminology
 
Jim's 5-11 reply to Ben B's 5-8     condolences
 
Susie O's 5-11 reply to Ben B's 5-8     condolences
 
Donald Hudson 5-11     tip for webtv users
 
Mel G's 5-11 reply to Stephanie's 5-9     doctors not communicating a big problem
 
Derald G 5-11     PDAs & Palm Pilot tips
 
Sharon 5-11     seek CHF specialist in Birmingham, Alabama
 
Pat M's 5-11 reply to Ben B's 5-8     condolences
 
Mary Lou L's 5-13 reply to Ben B's 5-8     condolences
 
Jacky 5-13     having terrible trouble sleeping
 
Noel P 5-13     seek info on transplant, ICDs, pacemakers, LVADs & more
 
Jon's 5-13 reply to Noel P's 5-13     I hope others also reply
 
Ben B's 5-13 reply to Janet T B's 5-11     arrhythmia experience & more
 
Donald 5-13     seek CHF specialist info
 
Jann Buchholz' 5-13 reply to Sharon's 5-11     CHF specialist info
 
William B's 5-13 reply to Sharon's 5-11     CHF specialist info
 
Janet T B 5-14     PVCs, learning about conditions & more
 
Jon's 5-14 reply to Janet T B's 5-14     my brain, PVCs, web sites
 
Joseph P's 5-14 reply to Jacky's 5-13     sleep
 
Joseph P's 5-14 reply to Donald's 5-13     like CHF clinic in St. Louis, Missouri
 
Sharon's 5-14 reply to Joan B's 5-13     thank you
 
Sharon's 5-14 reply to William B's 5-13     thank you
 
Derald G's 5-14 reply to Jacky's 5-13     sleep
 
Noel P's 5-14 reply to Jon's 5-13     meds, Bruce West's Newsletter
 


Lonnie, May 1, 2002 - Hi, I am a 34 year old male 5' 11" and weighing 225 lbs. I have DCM with an EF of 45%. I started out with an EF of 18% in 1998. I have regained a lot of physical energy and stamina but I seem to have reached a plateau and my doc has told me to lose weight and push myself in exercise. I have experienced the effects of over doing it and know that I have to start slow. Has anyone out there experienced similar gains in EF but not in physical energy and stamina? Do you lift weights? I would like to give it a shot and I still hold out hope of a normal life. lonniedanilak@hotmail.com


Susie O, May 1, 2002 - Hi Jon, I hope you are feeling better than a few weeks ago. I have a question. Would it be possible to make the letters just a tad larger? I start reading and before I know it, I'm leaning closer and closer to the screen. Thanks. texlady1@hotmail.com


Jon's May 1 reply to Susie O's May 1, 2002 - Hiya Susie, I leave this up to the reader so that everyone can get a font size they like. If you take a look at your web browser's menu bar with the icons on it, you may see a capital A. Click on it and you'll get a drop-down list of font sizes - take your pick. If there's no A, you just need to go to your browser menu at the top of your web browser window. In Internet Explorer 5.5, it's under "View", "Text Size". Again, just choose your font size. :-) I change mine all the time to get the size I want on various web sites. Jon.


Mel G, May 1, 2002 - Hi, I have idiopathic DCM and have been doing well in the last 6 months, since diagnosis. We're just beginning winter here, so I've been to my PCP and had a flu shot. Now it's happened though, I'm sick with a respiratory virus for the first time since I've known about my heart disease. I think I can thank my daughter for bringing this home from school last week.
     I'm into the second day of intensely sore throat, watery eyes, and blocked sinuses. I can barely manage to squeeze my meds down with a little water. Other than that, I've had some chicken broth and a cup of lemon tea. What I'm really worried about is that I can feel this heading for my lungs, which are starting to get heavy and I know it's going to settle in my chest by tonight or tomorrow. I try not to worry about my health but I live over 3 hours from a hospital and I don't want to leave a serious symptom too late.
     Should I just rest and take more soup, tea, and Tylenol when I need it? Is there anything in particular I should watch out for? How will a fever affect my heart? What happens when your lungs are heavy with phlegm from a virus? Would my doc want to see me just to make sure I'm breathing okay? Any tips would be very much appreciated. Thanks. falmouth@bigpond.com


Tracey C, May 1, 2002 - Hi Jon, What is the normal range for mVo2? My mom, who also has DCM, just had her Vo2max and scored a 32. Her doctor seemed very impressed and suggested that it is her 30 years of teaching yoga that may have helped. He is interested in conducting a study on the effects of yoga on CHF. Is 32 within the range of the normal populous, or just good for a CHFer? I'll be going for my first Vo2max in July. My mom said it was a tough test, so we'll see. Thanks a lot, Tracey. 2tcollins@cox.net


Jon's May 1 reply to Tracey C's May 1, 2002 - Hi Tracey, This is a question without an answer, literally. I have contacted respiratory clinics, pulmonology practices, CHF specialists and have also researched sports medicine web sites. I come away with a half dozen different answers. I am sorry but this is one I have not been able to nail down in years of trying. One site that at least lists ranges for healthy people can be found at www.brianmac.demon.co.uk/vo2max.htm but I do not endorse these as accurate in any way.
     A score of 32 is very high for a CHFer and indicates that she is completely compensated, at least for now. So many physical factors - not all understood by any means - go into oxygen use in the body of a CHFer that no one knows why some score high and others don't. My own scores have been all over the map on this one and I always reach the threshold needed for accurate scoring. Jon.


Jim L, May 1, 2002 - Hi, Regarding previous messages I have seen concerning dry mouth, a company called Scandinavian Naturals makes a saliva stimulating lozenge for dry mouth. It is excellent! I get it through the AARP Pharmacy but don't know any other drug stores that carry it. However, the company has a web site at www.scandinaviannaturals.com. My best. clocker131@charter.net


Joe S, May 1, 2002 - Hi, Well, it's been 8 weeks since my valve replacement and my heart seems to be doing great. I can even walk a mile, which I haven't been able to do for decades. However, all is not great. I caught the worse cold or flu bug last week that is turning me every which way but loose. I cough all night long, my eyes are so bad I can barely see, etc,... So pray that I will have more patience then I do now, Joe Stevenson. jes@gbis.com


Jon, May 1, 2002 - Hi everyone, I have to go sign a bunch of papers and spend most of my money at the lawyer's today to finalize my incorporation. Then of course, I get to tackle the IRS and state Department of Revenue, which is a far more complex task. Wonderful. Still, it's the only way to get the tax exemption. Then I have to hire an accountant. Ouch!
     Anyhow, I have now posted everything that came in while my web site was swimming lost in a cyber space black hole. If your post has not shown up by now, it probably is lost forever. I am very sorry. I can only ask that you re-post. Jon.


Ben B's May 2 reply to Tracey C's May 1, 2002 - Hi, The Vo2max is the darling of the CHF community now and I believe it is a very good test, however it has a couple flaws that I can think of. First of all, it is a test that measures oxygen in verses oxygen out. It doesn't really draw any conclusions as to what organ or part of the cardiovascular system might be causing a problem, it just shows the level of problem. Therefore, if you are out of shape, have certain lung problems, or other circulatory problems, it will show up and contribute.
     Secondly, it measures "peak" oxygen consumption, so it is a little subjective. You may actually stop the test before you reach your peak. I think the doctors can extrapolate and draw conclusions from the data, but it is still a little subjective, as opposed to something like a blood test. I know they give this test at the YMCA, although as Jon has pointed out many times this is sort of a rough cut Vo2, probably on cheaper machines.
     Anyway, the numbers I've seen on reports from the YMCA are similar to the ones on the link Jon gives above, which would put your mom at good or excellent for a normal person. I see this test as a useful tool for compensation but in no way a good tool for diagnosis. That is why I'm wondering why they give it so much weight in transplant evaluation. If your mom took this test alone nobody would ever diagnose her with CHF. bdbrinkman@juno.com


Jon's May 2 reply to Ben B's May 2, 2002 - Hi, Just to be sure everyone understands, the patient does not stop a "successful" Vo2max test - the technician does, when he has gathered enough data to support conclusions. You may have to stop early but if you do, the doctor knows his data is too limited to draw "perfect" conclusions. ;-)
     The reason mVo2 is given so much weight in transplant evaluation is that it is a pretty accurate prognostic tool, not a diagnostic tool. Gino sent me the full text of a very good article by "The Working Group on Cardiac Rehabilitation & Exercise Physiology and Working Group on Heart Failure of the European Society of Cardiology" from July 25, 2000.
     My daughter typed it up for me but I have never had time and energy to "translate" it for the site. I'll make it available as rich text file for download here. It's a big file so let it load and please note that it has not been proof read and is chock-full of Medspeak, but it is certainly relevant here. I hope it helps, and a huge thanks to my good friend Gino who snail-mailed it all the way from Italy!
     Finally, I feel like I am beating up on people when I post right after they do with information that either contradicts their post or enlarges on it. I feel like a heel but if I don't post on the topic right then, I'll forget it completely! My memory is no better than yours. :-( I just want everyone to know that I try to make sure the info here is as accurate as possible and I don't mean anything by it, really. I apologize for so often seeming to be just plain contrary. :-) Jon.


Karen F's May 2 reply to Susie O's May 1, 2002 - Hi, Does your mouse or trackball have a scroll wheel? If so, put your cursor anywhere in the body of your page. Now, hold down the Ctrl key on your keyboard and using the scroll wheel on your mouse or trackball, scroll towards your monitor. Your font will get progressively smaller. If you scroll towards you while holding down the Ctrl key, the font gets progressively larger. This way you can find a comfortable sized font for your viewing without having to mess with dropdown screens. Good luck with all the paperwork and lawyers, Jon. I don't envy you one bit! ferhoodled@yahoo.com


Chuck C's May 2 reply to Mike H's May 1, 2002 - Wow, I thought I was the only one with the weird back pain! I am fine until about 4 hours after I go to bed, then I awaken with lower back and hip pain that I cannot relieve with any pain relievers. The only thing that will help is to get up and move around, then in about 15 minutes the pain is gone. I have tried different mattresses and beds, and we sleep on a comfort-aire that is adjustable and have tried every setting on that. It just doesn't seem to make any difference. You have given me some reinforcement and I will pursue this with the docs in a more aggressive manner. Good luck. If anything works, let me know and I will do the same. bcarp@cconnect.net


John Rice, May 2, 2002 - Hi, Has anyone had their AV node turned off due to arrhythmias and rely only on their pacemakers? If so, how is that going?
     I had an attempted ablation last month that had to be stopped before the burning because they began to lose me and my pressure dropped to 80/40. They rescheduled for April 25 with a supposed guru in Arkansas because the problems were found in the left worst part to be in.
     Also, has anyone who had an ablation been able to feel it? I felt the last hour of the procedure and was screaming bloody murder for them to stop and they did not stop or increase any meds. It felt like a blow torch inside my body. The procedure did not work and I ended up spending one night in ICU and 3 more days in the hospital after that. I got a hematoma the size of a grapefruit in my neck incision. Then they called me Wednesday to say that what they thought was a urinary tract infection that they sent me home with was in fact E-coli and to be sure and take all the Cipro for it.
     My wife and I filed a complaint at the hospital but don't know if anything will come of it. We also fired my EP doc and found a new one who can't see me until May 21. My ICD went off as they pulled the catheter out. The whole thing was unbelievable. Has anyone else had problems with an ablation? djhrice@prodigy.net


Scott Brown's May 2 reply to Jon's April 30, 2002 - Hi Jon, My dad had excrutiating pain just above his ankle. Sometimes the pain would pass on its own and sometimes you could not even touch the area without going through the roof. The verdict was gout. Gout is a buildup of uric acid in the joints. Gout can be a common side effect of prolonged duiretic use. If anti-inflammatories are used, doctors have to monitor closely because NSAIDS can aggravate CHF. This may not be your problem, but it sounds familiar to me. Thanks, Scott B. kitchenerguy@hotmail.com


Scott Brown's May 2 reply to Mel G's May 1, 2002 - Hi Mel, It is always tough for CHFers to decide when it is time to throw in the towel and hospitalize. In general, colds and flu tend to last longer and affect CHFers more. Here are my suggestions to make it through a virus.
     Talk to your CHF doc about possibly taking more some extra duiretics to keep you dried out. Of course, keep a close watch on your weight. If you are not eating a lot, keep in mind your "base" weight may be lower as you lose a few pounds.
     Get lots of rest, but force yourself to walk around or sit up for a significant amount of time. Sometimes all you want to do is sleep day after day. This is a great way to get pneumonia, these two tips are designed to avoid pneumonia. Pneumonia is sure fire hospitalization for a CHFer. This is from too much fluid accumulation in the lungs.
     You may be surprised at how well your body can still fight bugs. Your white blood cells should still work well for you. See your family doc if you are worried. There are certain things the hospital can do for you that you cannot do at home. If you think you need one of these services, it may be time for a visit. They can dry you out with IV drugs and monitor your vital signs 7/24 with a heart monitor.
     These have been my experiences so far. Everyone could be different, but it surprising how similar we seem to be. I hope this helps. Get well soon, Scott B. kitchenerguy@hotmail.com


Derald G's May 2 reply to Joe S' May 1, 2002 - Hang in there Joe, you're sounding a lot more together than after the surgery. I can tell you're doing much better. If you are not sleeping propped up, please try it and keep a little water by the bed to sip when you are coughing. Watch the dairy products until the cold goes away. deraldg@earthlink.net


Dee L, May 2, 2002 - Hi, Regarding dry mouth, my doctor suggested brushing my teeth with a toothpaste called Biotene and also to buy their sugar free gum. Both of these products work great for me. deedurham@webtv.net


Rosemary, May 2, 2002 - Hi there, I just found your site and was very happy to do so. I was diagnosed with cardiomyopathy 6 months ago after going for a routine physical. My doctor heard a very slight heart murmur and sent me for an echo. My diagnosis came back as cardiomyopathy, mitral valve regurgitation, and left bundle block. Needless to say I was shocked, because I had no physical symptoms that I was aware of. For someone who thought she was relatively healthy and never took any maintenance drugs, it was very frightning.
     I am now on Coreg, Altace, spironolactone, and a baby aspirin. Are there any other people out there who have this disease but have no symptoms except for low EF? I am grateful for this of course, after reading through the messages and seeing various scenarios. I think I have a pretty good doctor, although most of my information came from a cardiac nurse who works with the doctors. I did ask a lot of questions but I guess I still don't feel like I have a handle on things.
     Since starting medication, I don't feel dizzy or have headaches, but things just don't feel quite right in my head. I've mentioned this but it didn't seem to be of too much importance. Has anyone else experienced this? The only thing I can liken it to is the feeling you have when you put on a pair of glasses that are too strong.
     Is there a specific exercise regimen that is good to follow? I have basically been using a treadmill. I'm kind of leery of anything else like weights or machines, but I'm getting bored. I was told walking is the best. I think my biggest fear is that I'm waiting for the shoe to drop. I'm feeling fine now but I wonder that with the passage of time and age, I will get worse until drastic things start to happen. I feel guilty and weak for feeling this way because it is such a negative way to look at things. There are a lot of people with much worse health issues and I feel I shouldn't be so scared, but I am.
     Jon, is there anything you can tell me about mitral valve regurgitation or left bundle block? The nurse gave me a scientific explanation, but basically seemed to place little importance on them in the scheme of things. Anyway, I think I've babbled enough. Again, I am very happy I've found this site. I plan to try to read through everything. It is nice to communicate with people who are going through what you are going through. You don't always feel that connection when talking to the medical professionals. Thanks for listening. roselite1@juno.com


Stephanie's May 4 reply to Mel G's May 1, 2002 - Hi Mel, My doctor always wants me to call or come in to get it checked out, even if it is something that you normally tolerate. He seems to be much more careful and tries preventive measures before it gets too bad. It is hard not to overreact but you're worth it, Stephanie. moodystephanit@hotmail.com


Mel G's May 3 reply to Mike H's April 30, 2002 - Hi Mike, I hope the back is a little better. Is there any chance that you're having kidney pain after taking diuretics late in the day? Is the pain better after you visit the bathroom in the morning? Just a thought. falmouth@bigpond.com


Raya, May 4, 2002 - Hi everybody and old-timers, I had today my yearly echo and the results surprised me. My EF is 65%, up from 15% in 1997. Right now I am feeling okay but sometimes I feel really lousy, short of breath, etc. The doctor contributed the improvement of course, to Coreg, and I agree with that. Fortunately, he did not take me off any of my medications, but left everything as it is: Coreg, Cozaar, Lanoxin and Lasix. I would be also very afraid to be taken off any medications, as I think that it is because of the medications that I am better, and to be taken off I would get worse again.
     My heart is still enlarged and my valve leaks a little, but the function is at 65, which is good. So I am very thankful for everything at the moment and my five-year progression to be healthier. I wish the very best to everybody on this board, Raya. raija@juno.com


Lori K, May 4, 2002 - Hi Jon and all CHFers, I wondered if anyone knows the relationship between cardiomyopathy and sleep apnea? Are cardiomyopathy patients more prone to it? Does an ICD help this or only a CPAP? I have had my CM about 6 months and noticed I have been awakening feeling like I stopped breathing. Has anyone out there had this? Thanks to all for past help as well, Lori. thegoof86d@aol.com


Jon, May 4, 2002 - Hi everyone, Sorry I missed posting yesterday. I've had a very, very bad heart week. To those who know me, I am sleeping 12 hours a day; yeah, the guy who can't sleep. <g> I feel a little better today and hopefully it'll be a trend. Jon.


Jon, May 6, 2002 - Hi everyone, Have you ever noticed how when it rains, it pours? <g> I've gained 3 pounds in the past 24 hours, and then my central air conditioner went blotto, so I don't know how well I'll cope this week. Have patience, please. :-) I did, however, get some pages updated, including Heartbytes, Pacemakers, Artificial Hearts, Medspeak, CHF Guidelines, ICDs, and LVADs pages. Jon.


Ben B's May 6 reply to Jon's May 2, 2002 - Hi, First of all, I am sort of an ornery guy and I do like a little argument every now and then. <g> I think we've had some minor disagreements in the past but in this case I don't think we disagree about anything. You are a lot more precise than me, which is a good thing. I agree that this test seems like an excellent prognostic tool rather than a diagnostic tool. However, I think a lifelong marathoner with a bum ticker could score a better Vo2 score than a couch potato with a healthy heart. That's why it has to be taken in context with all the other patient data, and I'm sure you agree with this.
     I think the article you referenced in many ways supports what I am saying. I just gave it a quick read but from what I could glean it is saying that the Vo2 max test is a good test but also that it can reflect other factors than pure heart function. These factors are perhaps caused by underlying CHF, but not directly heart muscle-related. I get the sense the article is trying to say you can improve your Vo2 max, and in turn your prognosis, by exercise.
     In other words, because a person may be inactive and out of shape due to their heart failure, this can lead to loss of skeletal muscle and ineffective use of oxygen, which can add to the perception of a bad heart. I get the sense it is trying to emphasize the importance of exercise in improving CHF quality of life, and avoiding the vicious circle where your heart failure makes it difficult to exercise, and the lack of exercise in turn makes your heart failure symptoms worse, and on and on.
     Like I said, I didn't read it in detail and I'm no medical researcher and it is there for everybody else to look at. Still, no major disagreement from me - I'm all for accuracy! bdbrinkman@juno.com


Jon's May 6 reply to Ben B's May 6, 2002 - Hi, if I had just one thing to say about heart testing in general, it would be copied almost directly from your post, Ben: Every test should be considered just one part of the picture, and not given so much weight in your mind that it obscures other things. An absolutely right on comment - context is critical. Jon.


Pat M's May 6 reply to Mike's April 30, 2002 - Hi Mike, Yes, I have that back pain in the same place too. Sometimes I have to get up and finish sleeping in the recliner chair. Let us know what you find out. I also started getting numb fingers on my hands when reading (holding a small book) and when I use my computer. I am reading these posts and answering you with no feeling in my right hand. Does anyone have a clue what is going on? Good luck, Mike. pmarble@tellico.net


Lonnie's May 6 reply to John Rice's May 2, 2002 - Hi, My 4 year old daughter had an Radio Frequency Ablation when she was 1 1/2 years old. We were told at first that she would require a pacemaker for life. As it turned out the procedure was a success and she is normal today with no complications and no need of a pacemaker. Praise God! She never complained of pain and she is now an active little girl with a normal heart. The doc is Dr. Kantoch, one of only two doctors in Canada that would do the procedure on children. He is from Poland but now works out of the Stollery Children's hospital in Edmonton. lonniedanilak@hotmail.com


Karen K's May 6 reply to Rosemary's May 2, 2002 - Hi there Rosemary, I can relate to your post. I was diagnosed in 1991, with my only symptom being a slightly swollen ankle. I'm on all the standard meds and feel quite fortunate to be leading a fairly normal, healthy life style. I've only been hospitalized once since diagnosis.
     I've been told I'm in denial but that is not the case. I am very much aware of my condition and do my best to adhere to diet guidelines. The doctor basically tells me I'm well compensated. I would encourage you to continue with your exercise program. I chose the treadmill also. Unfortunately, due to many life situations I've not exercised for awhile but I did manage to fly to California and spend 10 days cleaning my mother's home and moving her to Iowa.
     She is in very poor health, which I was not aware of. Now I'm providing nursing care; she is incontinent and at times seems to be suffering from dementia. We are waiting for a doctor's report to be made to a local nursing home and they will then admit her.
     I wish you the best of luck. Attitude is very important and it sounds to me as though you've got that under control, Karen K. karenk@mchsi.com


Cathleen's May 6 reply to Jon's May 4, 2002 - Hi, I'm so sorry to hear about your "bad heart week." Do you attribute it to the hydralazine you recently started? My own doctor wants to add it to my drug regimen. Feel better soon. lafsalot2000@yahoo.com


Jon's May 6 reply to Cathleen's May 6, 2002 - Hi Cathleen, Nope. I have had a rough month or two, with my EF dropping, my heart size increasing, and my blood pressure going up. My blood pressure is getting slightly better already with the hydralazine, even though I am nowhere near the dose my CHF doc wants me to end up taking yet. My heart rate is almost 110 (up from 95) though and if my symptoms and heart rate don't improve soon, I'll be back at the doc's. Jon.


Craig A's May 6 reply to Lori's May 4, 2002 - Hi Lori, Before I went into the hospital and was diagnosed with DCM, I had been having a very serious problem with sleep apnea. I would wake up and jump from the bed screaming; it seemed the only way to shock air back into my lungs.
     It went on for about 2 to 3 years. One day after my release I had a sleep apnea test. I was to take this machine home and hook myself to it. It measured my pulse, heart beat, breathing, sleeping position and movements. They were very happy to inform me that I had a normal test and nothing was wrong. I had now been on meds for a week. Basically the outcome for me was that my DCM had caused the apnea and the meds eliminated it for me.
     The doctor said the reason they like to do the test is that sometimes sleep apnea causes cardiomyopathy. I haven't had another sleep apnea attack that I am aware of now for 3 months - the length of time I have been on my meds. I tell you, it is an awesome feeling.
     Just as a side bar, my original EF was 18% and after 3 months on the meds it's now 30%. That's almost double from 12 weeks ago. I am very happy with these meds! bayce@joynet.com.au


Betty, May 6, 2002 - Hi, I'm a 66 year old female with DCM. I also have thyroid problems. I think my thyroid problems caused my DCM. Does anyone else have this problem? dtetik@fullnet.net


Sharon P's May 6 reply to Tracey C's May 1, 2002 - Hi, I had my first Vo2max test 10 days ago and found the test not nearly as difficult as I had imagined. I made it for 9 minutes 15 seconds, which my CHF doctor said was good. My arms and legs were really tired and I was pretty winded but my biggest fear was that I would fall. My history of falling and breaking body parts is well documented.
     My cardiologist said 24 would be considered normal for a female my age (53) and I tested at 18. He also thought that the results were comparable to the MUGA scan I had 4 months ago. The heart function and lung/heart function were at about the same level of effectiveness. If I stay committed to my new exercise program, the cardiologist thinks I will do much better when the test is repeated. Blessings, Sharon. sparker103@cox.net


Harry, May 6, 2002 - Hi, I am a 55 year old man who has had 2 heart attacks, one in 1993 and one in 2001. I now have an ICD and just this week had it go off for the first time. I am glad I had it or I would not be talking now. Are there any situations that can set off your ICD, such as stress, being overly tired, over eating, or does it just happen when it feels like it. I have a ejection fraction of about 20%. Any reply appreciated, Harry. shortbal@epix.net


Joanne, May 6, 2002 - Hi, Can anyone define an LVEDP to me? I was told it means a high end diastolic pressure, but even after 10 years in nursing this cannot tell me why my chest pain persists. Anybody with ideas, jump right in! Thanks, Joanne. ellijayjoe@ellijay.com


Samantha B, May 6, 2002 - Hi, Does anyone know if there is a table that shows the average, above average, and below average numbers for Vo2max treadmill tests? beaks99@attbi.com


Diana H, May 6, 2002 - Oh my, Just reading all your posts makes me feel like an idiot. How did all you people learn all this technical stuff? You sound like doctors. Now I've gotten out the last 2 letter summaries my cardiologist sent me after my last 2 visits, and I see that I should have been looking up these words but I felt so well for a such a long time that I wasn't concerned.
     Besides reading The Manual to get educated quickly, is there any other recommended reading? I have DCM, CHF and am feeling lousy. dhaugh@ppainc.org


Lou H, May 6, 2002 - Hello all, Here's a strange question. Has anyone here had any trouble with their voice? I realize CHF patients get hoarse every now and again, but I haven't been able to speak above a whisper for a month and a half. My cardiologist referred me to an ENT doc, who basically informed me that my left vocal cord is paralyzed. Either it'll just go away, or I'll have to have surgery to move the vocal cord over by the right one. I'll only get about 90% of my voice back that way, but at least it's something.
     Essentially, my enlarged heart is pressing on a nerve and the nerve just couldn't take any more. My cardiologist didn't seem to know very much about this, so I'm wondering how common it is. Any info you guys and gals might have would be greatly appreciated. stormhawk@monstermenagerie.com


Jon's May 6 reply to Lou H's May 6, 2002 - Hi Lou, I have no personal experience with this but a quick search in The Archives turned up a thread on it starting with Vicki's August 20, 2001 post (let it load). A CHF specialist I trust also told me regarding a similar reader experience that left atrial enlagement can press on the "Recurrent Laryngeal Nerve" that runs just where the trachea (windpipe) splits into the two main bronchi (windpipes that lead to each lung). That pressure can cause hoarseness. He said the main thing is to better diurese that person, meaning dry you out more with additional or combination or diuretics. Jon.


Janet T B, May 6, 2002 - Hi everyone, I was diagnosed with DCM this past February and experience PVCs. I have noticed that the PVCs can vary considerably from day to day, both in frequency (anywhere from a few to 15 to 20 times per minute) and intensity (I only notice if I concentrate, to it feeling like my heart will jump out of my chest and run down the block). The frequency and intensity of these PVCs seems to be connected with my level of energy and overall sense of well-being. I swear when I am experiencing the upper end of the frequency/intensity spectrum, my heart's efficiency goes down and I am more tired.
     Does anyone know if extreme PVCs are related to EF? Does anyone else experience this connection? I am only on 3.125mg Coreg BID at this point, along with a sub-target dose of Altace, so I am hoping that when the Coreg is increased my PVCs will decrease.
     Also, many thanks to Lori for posting the initial message about sleep apnea. I also have wondered about this as I experience symptoms of sleep apnea. I also wonder if sleep apnea/oxygen deprivation is what set off the seizure that got me into Club Med in the first place, at which time I was diagnosed with DCM. Just lucky I guess! Be well, all, Janet T. B. jtitus@chestnut.org


Jon's May 6 reply to Janet T B's May 6, 2002 - Hi Janet, PVCs wear you out just like a-fib does. Your heart is not pumping quite so regular a supply of blood when it keeps contracting too quickly, incompletely, or is "skipping" beats. PVCs are not lethal but they can sure make you feel like dog doodie - that I know from personal experience. ;-) Most people do get some relief with target Coreg doses. Jon.


Scott Brown's May 7 reply to Rosemary's May 2, 2002 - Hi Rosemary, You need to go back to your cardiologist and ask what they think your limitations are. At my local hospital, I went on a medically supervised treadmill test. The treadmill goes faster and higher (steeper incline) until it reaches a 15-minute maximum. Based on this, there they suggest what range of exercise is good for you.
     My EF is only 25%. My CHF mostly seems to affect me at rest, with lung crackles when congested, shortness of breath, dull pains in the heart area. When I am doing physical activity, I almost seem to be normal, except I need to breathe harder. In the end, my cardiologist gave me these suggestions (this is an example only - each individual will differ):

I am in a cardiac rehab program with other CHF patients. I can tell you that so far exercise has been the best thing for my CHF, short of Lasix. Most days I feel quite normal, and that is a terrific accomplishment for me. Good luck. Let me know how things turn out. Make sure you consult a cardiologist before you decide what is good for you, Scott B. kitchenerguy@hotmail.com


Brian M, May 7, 2002 - Hi Jon, Just wanted to let you know that I have been repairing A/C units for about 25 years now and would be glad to help you out with any questions. You can reach at pipefitter5972000@yahoo.com or joannandbrian@earthlink.net . I share the second address with my wife. If anyone else has any air conditioner questions I'd be glad to try and help. I live in the Chicago area. joannandbrian@earthlink.net


Jon's May 7 reply to Brian M's May 7, 2002 - Hi Brian, Thanks for the excellent offer of help. A seemingly competent repairman looked it over yesterday and said I have no power to the unit at all despite the breakers looking good. He did take apart both switches so he's probably right.
     I have an electrician coming to look at it in the next 48 hours and hopefully he can get us running again. I am using a home warranty company right now. We're dropping them as worse than useless when our current coverage runs out next month. My brother in law runs his own commercial AC installation/repair company and we'll be asking him for help next time. <g> Jon.


Mel G's May 7 reply to Betty's May 6, 2002 - Hi Betty, I've wondered about a thyroid connection too. My mother had hypothyroid most of her adult life, I think it's called Masimoto's thyroiditis, and died from SCD two years after diagnosis of DCM when she was 50. That was in 1982. One of my sisters has had hypothyroid, controlled by thyroxine or synthroid, for about 10 years and I've had hypothyroid, controlled by meds too, for about 3 1/2 years.
     Six months ago I was diagnosed with DCM, and at age 44 have been told the fact that my mother died of exactly what I have and that we have an almost identical medical history is not related. There's one for Ripley's Believe it or Not. <g> They also haven't made any formal connection to the thyroid disease with me. All my other 5 siblings have run out and had EKGs, etc,..., and have normal, healthy hearts. If you look at Who's Who on this site, the thread of thyroid disease (and depression) seems to run through many of the bios. It's just had me speculating, but I'm not aware of any formal connection.
     Thanks for the good wishes regarding my flu, and the post of May 1. I did visit my PCP when my cough and breathing got pretty bad. I've just had 2 completely forgettable days in Club Med because of it. I was poked, prodded, filmed, scanned, and monitored. I had a resting MUGA yesterday and they let me out today. I am going back tomorrow for a stress MUGA. I hope the results are good. falmouth@bigpond.com


Ruthie A's May 7 reply to Diana H's May 6, 2002 - Hi Diana, Please do not be intimidated by our use of medical terminology. Unfortunately, it comes from a lot of practice with those terms. I have had many comments from medical personnel about my knowledge of CHF and about my own condition. Mostly they ask if I was a medical student or something. Usually it gets a laugh from me, but when I get to thinking about it, I wish I didn't know a lot about CHF and medications. It would mean I didn't have it. Oh well.
     It's been quite awhile since I posted so here's an update. I am fairly well compensated at the moment although my sleep patterns are worse than ever. My PCP thinks that I need an antidepressant but I just need some sleep! He says that CHF is definitely not connected to insomnia and that it must just be stress. Who's stressed? Just because I have CHF, diabetes, severe arthritis, and a bad back that is getting worse; just because hubby and I had to file bankruptcy and because of that, almost a year of unemployment and no insurance; just we have to move in 6 weeks and have no idea where we are going; just because our son is getting married in October and we have no money for clothing, transportation, etc,..., to attend. Who's stressed? Not I! ;-)
     To add to it all, since I have diastolic dysfunction I have poor exercise tolerance so I cannot work out or even walk without stresses that build up. I thank God He is in my life or I would be miserable, Ruthie A. laba51@yahoo.com


Nancy S' May 7 reply to Lou H's May 6, 2002 - Hi Lou, Before I was diagnosed and put on meds I had been very hoarse for about 4 or 5 months. I really didn't know what it was and kept thinking it would go away but it didn't. I was diagnosed and sent to the hospital and my pulse-ox was only 37%. I don't know if it had anything to do with that but I always thought that it did.
     My heart was dilated to 7 1/4, which could have caused it to press on the nerve that Jon mentioned in his post. It went away very quickly after being diagnosed and medicated. I hope you get your voice back very soon, although my husband probably wishes that I hadn't. ;-) ns1@alltel.net


Joyce, May 7, 2002 - Hi, My husband has CHF and lately has been complaining about right shoulder pain. Has anyone had this experience? I have read a lot of posts on foot and back pain but haven't seen aything yet about shoulder pain. Should we be concerned about this? Is it possbile that it is just another side effect form all the meds? He is on massive amounts of duiretics. He also takes Coreg and so many other drugs that I don't have time at the moment to list them all. Any comments would be greatly appreaciated. jas48@webtv.net


Joseph P, May 7, 2002 - Hi, If anyone would like to check for drug interactions, try www.discoveryhealth.com and then go to "Drug interaction." This might help a lot of people. Thanks, Joseph P. joeandol@shawneelink.net


Joe S' May 7 reply to Jon's May 6, 2002 - Hi Jon, Don't you dare gain 3 lbs in 24 hours. That's only for people like me. I even had to read the first few chapters of Job and Lamentations to discover there are some worse off than I was. Actually I am feeling a 1000% better but God and I got into a major debate on how just and merciful He was to give me that lung virus right after the heart surgery.
     Over the 58 years of a bad heart I discovered that sometimes the sleeping and sitting position can cause fluid retention. Right now I am also about 3 to 4 lbs heavier than normal, but that's primarily because I have to sleep sitting up right now. That's changing also. Tell you what, let's pray for each other, Joe S. jes@gbis.com


Nadine's May 7 reply to Betty's May 6, 2002 - Hi, I'm a 48 year old female with goiter (non-toxic) for the past 22 years. I believe this happened during pregnancy with my fourth child. Women sometime get a thyroiditis while pregnant. The majority have no further problems, while a few develope goiters. I believe this is why my heart got weak and enlarged, due to years of a fast heart rate. ndicks@panynj.gov


Duane C's May 7 reply to Jon's April 30, 2002 - Hi Jon, Your foot pain sounds a lot like rheumatic fever pain. I had rheumatic fever when I was a kid and my knees hurt a lot. I could not walk down the stairs in the morning. The pain would come and go for seemingly no reason. I could never get a doctor to explain to me what caused that pain, Duane. djclink@starband.net


Jon, May 8, 2002 - Hi everyone, I am getting ready to do posts but wanted to put this up first. Thank you to everyone who sent me a birthday present! They were great! I have not yet gotten the last thank you notes mailed out but will try to do so soon. It's been a rough couple of weeks. It looks like my daughter will make it home just in time to help me celebrate my birthday though. :-)
     I have updated the Surgery, Medspeak, and Links pages, and I really put the whammy on the Archives Search page. It isn't 100% done yet but I think you will find it very helpful when making use of The Archives.
     Well, I'll start getting posts marked up. Again, to everyone who sent me a gift, a card, a note, whatever, I was honestly touched. Thank you all! :-) Jon.


Lou, May 8, 2002 - Hi, Thanks for the info, Jon and Nancy. My doc said that it could just clear up on its own, so I'm hoping. Some good news for me, though: The transplant docs in Birmingham say my heart isn't bad enough for a heart transplant. Right now they think that meds and exercise are my best bets, so I'm just gonna keep on doing what I've been doing. stormhawk@monstermenagerie.com


Tom S' May 8 reply to Lou's May 6, 2002 - Hi, For the past few years I have been plagued with hoaresness as the day progressed. I start the day fairly clear throated then it gets progressively worse despite the fact the only people I talk to in the early hours of the day are my wife and kids and that is only to say goodbye. Usually I am alone most of the day so it sure can't be from talking too much. I talk very little on the phone.
     I had an echocardiogram performed Monday and my EF is now 10 to 15%. I knew I had to be tired for a reason. No word on what the docs are going to do about it at this point. bhigheart@hotmail.com


Jan, May 8, 2002 - Hi, I am seeking other CHFers' experiences in keeping their weight under control. My husband was released from the hospital on March 5 after draining 36 pounds of fluid and implanting an ICD. He went in as decompensated class 4 and could barely walk 3 feet without resting. He was so much better when he was released, but since then he has gained 20 pounds back.
     He is on 3 different diruetics, along with Vasotec, potassium, Coreg, prednisone, singular, 2 inhalers and has a restriction of 2g sodium and 1500cc fluid per day. He is pretty faithful with his meds and restrictions. He exercises by walking daily. It seems each morning he steps on the scale and sees the weight gain, and it ruins the rest of the day. He is very down and depressed.
     We are going to his CHF doctor this afternoon and he wants to hospitalize him again. I am afraid all the encouragement in the world is not helping at this point. I feel he is giving up. This is very new for him as he was diagnosed in February. He is 46 years old. I have read the boards here and have gained a lot of valuable information. I appreciate all experiences and comments and any help offered. Thanks to all and thanks to Jon for making this site available. vstuart11@hotmail.com


Katherine H, May 8, 2002 - Hi, I have 3 different arrhythmias: PVCs, PACs, and SVT. My cardiologist assures me that none of them are dangerous. These have been recorded on an event monitor. I also have arrhythmias where my heart feels like a crawling bag of worms for about 15 minutes, and others where it feels as though my heart has stopped and I am about to pass out. Those did not happen when I was wearing the event monitor.
     With that history the cardiologist put me on a low dose of 50mg amiodarone (Cordarone), tapered down from a starting dose of 400mg daily over a several week period. At 50mg I continue to have some arrhythmias but it is much better. However, the side effects of the amiodarone on top of my Coreg (6.25mg twice a day) side effects leave me feeling exhausted and in a brain fog. Most days I need to go home from work (desk job) by 3:00 PM and I hit the bed for as much as 3 hours before I can get up and function.
     My quality of life is such that I am thinking about asking the cardiologist to discontinue the amiodarone if the arrhythmias truly are not dangerous. I get mixed signals about that. For one thing he put me on the amiodarone for those arrhythmias and for another I have been told PVCs can turn into V-tach. I would really appreciate an arrhythmia discussion. Do they affect your heart over time, and are they all dangerous to some degree or are some truly not harmful?
     Somehow, it just doesn't make sense to me that having your heart doing somersaults, either fast ones or slow ones, doesn't contribute to the wear and tear already happening with a low ejection fraction. Any information you can provide would be very helpful. kholian@metropo.mccneb.edu


Jon's May 8 reply to Katherine H's May 8, 2002 - Hi Katherine, Don't miss the long arrhythmia discussion in The Archives. Just use The Archives search page to find the exact starting post under "Miscellaneous." Has your cardiologist had you evaluated by an electrophysiologist? An EPS may be in order. Jon.


Janet H's May 8 reply to Diana H's May 6, 2002 - Hi Diana, I've found the book Success With Heart Failure by Dr. Marc Silver to be a very valuable and accurate resource for us CHFers. I'd recommend it. janetca1@email.msn.com


Cathleen, May 8, 2002 - Hi, I just wanted to thank both Lou and Jon for enlightening me about a possible cause for the voice hoarseness problem. I have an enlarged atrium and have been plagued with similar problems for well over a year. I am definitely going to bring this up with my doctor. Thanks again, Cat. lafsalot2000@yahoo.com


Peggy, May 8, 2002 - Hi, I would like to know if anyone has been on the drug Tikosyn. My husband has been in and out of a-fib since February and is not feeling at all well from it. They tried amiodorone but his blood platelets fell too low from it and he had to stop taking it. Now they want to try Tikosyn. He has to go to the hospital and be monitored for 2 to 3 days after he starts this drug. Has anyone heard of this? Also has anyone had any side effects from this? Peggy. RyoungAngora4683@aol.com


Jon's May 8 reply to Peggy's May 8, 2002 - Hi Peggy, Don't forget to read up on it here. There are 2 articles on it at New CHF Meds (dofetilide is Tikosyn) and there are at least 3 articles on it in the text files available for download here as zip files (bottom of the page). I haven't used the site search engine to look for posts in The Archives but suggest giving that a try also. I am sure others will post but wanted to get you started. :-)
     It's not unusual to start drugs in the hospital in patients with arrhythmia. Many anti-arrhythmic drugs are "pro-arrhythmic" and should be started in the hospital. Jon.


Ben B, May 8, 2002 - Hi, My father died yesterday afternoon at 3:30. After 30 years of CAD and 25 years of CHF he ultimately died from an infection he picked up in the hospital. It affected his kidneys and all his other organs, caused his potassium to rise, and he had a cardiac arrest. Prayers are requested for my family. bdbrinkman@juno.com


Stephanie, May 9, 2002 - Hi, I just returned from the doctor and can hardly believe what happened. I was diagnosed with DCM 3 years ago with an EF of 15% and am on the standard CHF meds. I went in with complaints of increased symptoms. My doctor just blew me off. He said that I was depressed and thinking about myself too much.
     I am not depressed and do not go to the doctor with every little complaint. This is the same doctor that I have had the whole time and have been pleased with his care. Today he told me that I should not be experiencing symptoms, even when I overdo. It could not get worse and can only get better. He negated everything I have learned in the last 3 years. It really has me upset. Doctors do not realize the influence they have on their patients and how much we depend on them. moodystephanit@hotmail.com


Karen F, May 9, 2002 - Hi, Tuesday I had my second 3-month follow-up visit with my CHF specialist since my hospitalization in November. He was very pleased with my stability. I am class 3 and we are working to keep me there and not get worse at this point. He has scheduled me for a sleep study next month. Evidently, based on the nursing staff's notes from when I was hospitalized and his own intuition, he thinks I may have sleep apnea and be unaware of it. That could explain my constant feeling of not having slept all night, even though I know I have. From what I gather, sleep apnea is not uncommon among CHF patients, but it is easily treatable if diagnosed.
     While I was waiting for the doctor, I had brought along my copy of Dr. Silver's book to reread. My CHF doctor saw it when he came in to examine me and excitedly picked it up, asking me all kinds of questions about it. He quickly thumbed through the book and seemed favorably impressed. He even asked if I knew when a new updated edition would be released. I have to say that my CHF doc seems to take great delight in the fact that I've learned so much about this syndrome and that although pure MedSpeak is beyond me, he doesn't have to dummy things down too much to discuss my CHF with me. Between this web site and Dr. Silver's book Success With Heart Failure, I feel more knowledgable and therefore more in control of the things I can control. That makes me more of an active partner in my health care, which really makes my CHF doctor beam with pride when he sees me at my visits.
     The best news of this visit was that he doesn't think he needs to see me now for another 6 months, instead of the usual 3. Of course, I'm always supposed to initiate a visit if I feel something changes and needs more immediate attention but he thinks I am informed enough that I can be trusted to be alert to any changes and act accordingly. ferhoodled@yahoo.com


Vee's May 9 reply to Jan's May 8, 2002 - Hi Jan, Beware of prednisone and other systemic steroid meds. In addition to a lot of other nasty side effects, they make the body hang on to sodium and fluids. That could be one explanation for your husband's rapid weight gain. I had a horrible experience myself with prednisone when they were first trying to diagnose my CHF. You can't stone cold go off the stuff either if you experience adverse effects - you have to taper off it gradually. I'd never go down that road again.
     On the other hand, I do all right with inhaled steroids. I suggest you discuss other options for asthma control with your doctors. Did his asthma predate his heart problems? Sometimes it's hard to differentiate the cause of breathing problems. Coreg can also make asthma symptoms a lot worse so I wonder why they prescribed it if he needs all those other breathing meds. maize2001@earthlink.net


Doris, May 9, 2002 - Hi, I've not posted for some time but thought this might help someone else. I've had the worst foot pain for several months and have taken all the drugs and everything else I could think of. Friday night I had the worst foot pain and leg pain I have ever had. Saturday I started breaking out with sores. By the time I went to the doctor I was a real mess. I now have shingles. My feet have quit hurting. I'm not sure what they have to do with each other but it is a nerve thing. It isn't much of a trade-off. We leave tomorrow for a 3-week vacation. tarter@wico.net


Dan H, May 9, 2002 - Well, I will be heading off for my ICD Friday. Since I also have an aortic valve, I have to be weaned off Coumadin before the implant, which will be Monday. Thanks to all who've written to me off the board to tell me of your experiences, it's been a big help. danpatricia.hunt@prodigy.net


Nancy S' May 9 reply to Ben B's May 8, 2002 - Hi Ben, I'm so sorry to hear about your loss and wanted to let you know that you and your family will be in my prayers, Nancy. ns1@alltel.net


Janet T B, May 11, 2002 - Hi, Does anyone know if PVCs are considered "ventricular arrhythmias?" Given the greater risk associated with ventricular arrhythmias, I asked my cardio doc point blank at my last visit whether they are considered VAs. He said no. Now I have just read on a medical site that they are considered VAs and, furthermore they can be dangerous or life-threatening if there are more than 5 in one minute or multi-focal because they can initiate V-tach. I had always heard they were not dangerous. So what have you all heard? Are they or aren't they VAs? I'm getting conflicting messages. jtitus@chestnut.org


Jon's May 11 reply to Janet T B's May 11, 2002 - Hi Janet, My brain's about half dead today but I think you're getting caught up in terminology. It's not that PVCs are this or that and thus qualify under a blanket definition of dangerous. Instead, it's a matter of whether a problem that you have with your heart is dangerous to you or not.
     Doctors speak in general rules - that's the way they quickly learn how to treat most patients. However, medical rules are not rules of nature. <g> They can easily be untrue in any given patient. We CHFers know this better than almost anybody, don't we?
     This is the first time I have heard PVCs called really dangerous. I wish you had given a source for your info so we could all take a look at it. I have never heard of PVCs leading to a more dangerous form of arrhythmia. That doesn't mean it can't happen but I've never heard of it.
     Just don't get so caught up in terminology and general medical rules that you lose sight of what is important to you. I think you should talk to your own CHF doc about it - at length - not about what things are called but how they occur and behave, and what that means to you and your heart and health. For what it's worth, my case frustrates my own CHF doc because I seem to break many of those general medical rules. ;-) Jon.


Jim's May 11 reply to Ben B's May 8, 2002 - Prayers from my family here in Tennessee to yours, Ben. I am sorry for your loss. Your father's going home to be with the lord. God bless. jamburns@msn.com


Susie O's May 11 reply to Ben B's May 8, 2002 - Hi Ben, I am so sorry for the loss of your dad. You will be in my prayers in the days to come. texlady1@hotmail.com


Donald Hudson, May 11, 2002 - Hi, To those out there with webtv.net who find most pages covered with 125 red hearts in rows of five so that text is unreadable, it is not a block to keep us out or a password type thing. All the pages will print out without the logos. Do not be put off when trying to access pages here - just print off each page - it is well worth it. If you do not have a printer, try the library computers. Jon has been most helpful with this frustrating problem with MSN. Thank God the message boards have always been clear. jdhudson@webtv.net


Mel G's May 11 reply to Stephanie's May 8, 2002 - Hi Stephanie, I just wanted to say that I am in 100% agreement with you. Unfortunately, so many of these brilliant doctors are incredibly poor communicators. I have had the same experience and spent months being highly frustrated with my cardiologist, who ignored almost every question or concern I had. Can't they see that they are the one you turn to for answers to the most fundamental issue? That is, "Doc, am I going to live or die?" To be dismissed with the attitude, "Oh don't worry your little head, dear" is humiliating! Keep your chin up, you are right! Follow your instincts and pursue your answers. falmouth@bigpond.com


Derald G, May 11, 2002 - Hi All, I had an idea that worked rather well. I have a PDA (Personal Digital Assitant). Some of you have Palm Pilots or Pocket PCs too. I went to http://www.avantgo.com/login and set up www.chfpatients.com as a channel. Now, every time I synchronize with my PC I get any pages updated from chfpatients to my PDA automatically, including this heart forum. Plus, I've got The Manual and some of the other cool pages Jon has made handy for instant reference. I can even reply to your e-mail addresses and submit this page offline and they will transmit on the next synchronization. deraldg@earthlink.net


Sharon, May 11, 2002 - Hi, I'm seeking a CHF specialist for my 70 year old mother in law. She resides in Birmingham, Alabama. Any recommendations or suggestions would be appreciated. Thank you, Sharon. mac1@fdn.com


Pat M's May 11 reply to Ben B's May 8, 2002 - Hi Ben, I am so sorry to hear about your dad. More prayers to you from another friend in Tennessee. God bless you, you are in my thoughts. Love, Pat M. pmarble@tellico.net


Mary Lou L's May 13 reply to Ben B's May 8, 2002 - Hello Ben, Your family will be in my prayers. I am so very sorry to learn of your dad's passing. Just be sure to keep him in your heart and in your thoughts; then you will have him with you always. Love, Mary Lou. MLBinks@aol.com


Jacky, May 13, 2002 - Hi, I am having terrible trouble sleeping. I can get to sleep (after reading for an hour) but 2 hours later I wake up. Sometimes I can go back to sleep for another 2 hours but more often I am awake for 2 hours. Help! Jacky. Jackywmb@aol.com


Noel P, May 13, 2002 - Hi, I am requesting information on where to access information on heart transplant statistics for various centers, such as survival rates of one place versus another. The reason I am wondering is that one local cardiologist said the place I was going to probably have a "dying program" while the one he recommends does a lot more transplants and has a better overall rating. This doctor is one that does not communicate very well but his opionion now has me somewhat apprehensive.
     Also, I seek info on any drugs that are known to reduce the overall size of the dilated heart? When does one get considered for oxygen? Has anyone ever tried oxygen under pressure to help the failing heart regain some strength? I have been in 3 experimental drug studies and one which resulted in Losartan was very good for me for a long time.
     Does anyone with some other success stories in ongoing studies know of one that I might still get into? No one is talking here about any left ventricular devices; Are they any good? Has anyone hadt problems with them,? How long have some people been using them? Do many of you get automatic defibrillators or defibrillators with bi-ventricular pacemakers? Bye for now and may God bless you all. noel-palmer1@juno.com


Jon's May 13 reply to Noel P's May 13, 2002 - Hi Noel, I hope others reply because I have no personal experience with ICDs, pacemakers or LVADs. Please see the links page in the heart transplant section. You'll find all the resources you need to get the info you are looking for on heart transplant stats there.
     Ace inhibitors and beta-blockers taken at target doses have been proven to reduce heart size in heart failure patients. Ask your doctor point-blank if you need oxygen and after he answers, be sure he explains why or why not. If the Losartan helped, are you still on it? An ACE inhibitor? A beta-blocker? At target doses? These should be a good start. I have not seen any data supporting using oxygen under pressure for heart failure. Jon.


Ben B's May 13 reply to Janet T B's May 11, 2002 - Hi, I think you are going through the normal panic associated with new diagnosis of an irregular heartbeat of any kind. Some research can lead a person to worry too much. Don't get me wrong, your doctor should carefully check your heart rhythm, but I also went through a lot of this worry over PVCs. In my typical EKG, PVCs were the norm. I had thousands every day. I remember lying in the hospital, watching my monitor, and seeing couplets, triplets, bigeminy, even occasional tach.
     I can tell you what I have heard: Technically PVC's are ventricular arrythmias, but in and of itself that means nothing. In normal hearts occasional PVCs are virtually harmless. Weakened hearts tend to throw off a lot of PVCs and other abnormal beats in general. The only way to find out if they are life threatening is thorough testing, such as holter monitors or electrophysiology tests. Even these are not 100% accurate.
     If your EF is greater than 35% I have seen a few studies that indicate ICDs may not be as useful in people with EFs over that level. This would indicate to me that just as weakened hearts cause more abnormal beats, abnormal beats are more dangerous in extremely weakened hearts. Most newly diagnosed hearts are at their weakest and improve at least somewhat after starting medication. Still you should get proper testing from your doctor if you think you need it.
     I will say that Coreg has worked wonders on my heart both in strength, as my EF has risen from 10% to 45%, and in rhythm, as my PVCs are just occasional now. More than anything, you should get proper treatment but not let yourself go into a panic over this or that thing you read somewhere on the Internet. You will read a lot of nonsense on this darn thing - but not here. <lol> bdbrinkman@juno.com


Donald, May 13, 2002 - Hi, I am searching for a CHF specialist in or near Phoenix, Arizona. Has anyone used a CHF doc from Cleveland Clinic? Has anyone used Dr. Marc Silver in Illinois? Any info appreciated. ds2ernst@aol.com


Jann Bulchhoz' May 13 reply to Sharon's May 11, 2002 - Hi, I moved from Huntsville, Alabama, where I was diagnosed with CHF. My doctor there was Sivrastra Katta and he was wonderful. I don't have his phone number any longer because I moved to Wisconsin but I would contact his office for a recommendation for Birmingham. He is connected with Huntsville Hospital. Good luck. I overheard the nurses talking about him when they thought I was asleep saying that I was lucky because he was the best in town. My PCPknew how to take care of me. He is also very compassionate and will talk to you about everything. bicycle@chorus.net


William B's May 13 reply to Sharon's May 11, 2002 - Hi, Get a referral to Kirkland Clinic At UAB. willdet@juno.com


Janet T B, May 14, 2002 - Hi Jon and Ben and the rest of the gang, Thanks for responding to my latest obsessive posting on PVCs. This is not the first time it has been suggested that I may be getting hung up in the details <blush>. ;-) I was conversing with a list-mate last week about PVCs because we were both concerned that our cardio docs weren't telling us the whole story about PVCs, so we started to do a little research. Also, when I consulted with a CHF specialist this past March, I learned that PVCs can progress into V-tach, but they have to be sustained (one after another with no break) for more than a few beats.
     I read about the potential for PVCs being dangerous at http://user.gru.net/clawrence/vccl/chpt5/pvc.htm. Any thoughts? Anyway, I am hoping that once my Coreg is increased, my near-constant PVCs will subside like they did for Ben. They are a constant reminder that all is not well, and that grates on me.
     In other news, my energy has been much improved during the last week; a welcome reprieve. I've even been alert and active past 9:00 PM - amazing! Thanks again for encouraging me to take off the blinders and take a deep breath. I'm still a rookie at this CM/CHF stuff. Janet T. B. jtitus@chestnut.org


Jon's May 14 reply to Janet T B's May 14, 2002 - Hi Janet, First, please note that my brain feels like quicksand lately. My daughter is home, my dogs are sick, my heart has gone south, and my sleep and meds are all screwed up, with my meds being changed again and a Holter monitor, doc visit, and more testing in my future the next 2 weeks. <g> It's been worse but for a week or two I may be brusque just out of plain old fatigue. ;-)
     I read the page and sent the author an e-mail asking some questions. However, he does not list a valid e-mail address. According to that server's qmail, his listed address is invalid. So much for reliability. I can say that I have personal experience with more than 5 PVCs per minute and after a 36 hour inpatient stay with constant cardiac monitoring and a whole lot of testing, my own CHF doc and an electrophysiologist said I was in no danger whatsoever.
     One thing to remember until you are really knowledgable about a topic is that when you are on a server like the one you saw this statement on, you are not on a top level domain but rather on a "home page." I know better than anyone how valuable a home page can be <g> but I also know that I try to do most of my own research on top level domains; when I am not on one, I am careful to note the author and to at least quadruple check his information rather than my usual triple-check.
     Top-level domain means that you can strip off everything after the .com, .doc, .org, or .net in the url and get the main page, and it will still be the same organization as all other pages on the site. For example, on www.jonsplace.org/rel/random.htm you can go to your browser's title bar and strip off the "/rel/random.htm" and hit your Enter key and still be at Jon's Place. This does not mean the info is accurate on a site but it does mean that one organization is overseeing the content and so you have one responsible party for everything on the site.
     Anyway, I tracked the author to Santa Fe Community College in Gainesville, Florida but their online employee directory does not list his name as even working there. Again, so much for reliability. Another search did turn him up as an academic (not a practicing clinician) authoring the site you found but giving no further information on him whatsoever. I wouldn't be too bothered by his statements - they did not apply to me when I had scads of PVCs. Jon.


Joseph P's May 14 reply to Jacky's May 13, 2002 - Hi, I read somewhere that if you schedule your sleep, it will help you. I schedule my sleep off and on during the day, and the night takes care of itself. Joseph P. joeandol@shawneelink.net


Joseph P's May 14 reply to Donald's May 13, 2002 - Hi, I live in southern Illinois and I go to St. Louis, Missouri, and I am very happy with the program there. It's a CHF managment center. If you would like to know more let me know, Joseph P. joeandol@shawneelink.net


Sharon's May 14 reply to Joan B's May 13, 2002 - Hi, Thank you so much for the information. mac1@fdn.com


Sharon's May 14 reply to William B's May 13, 2002 - Hi, Thank you so much for your help. mac1@fdn.com


Derald G's May 14 reply to Jacky's May 13, 2002 - Hi Jacky, How do you feel when you wake up? Are you short of breath? Do you drink alcohol? Alcohol will disturb your sleep cycle and if you're short of breath at night, it could be the fluids that have collected in your extremities during the day are pooling back into your lungs. Sitting up is supposed to help. When I have trouble sleeping I go sit in my lounge chair - a $15 Goodwill special <g> - pray for about 15 minutes, and then snooze the rest of the night. deraldg@earthlink.net


Noel P's May 14 reply to Jon's May 13, 2002 - Hi Jon, Thanks for the reply. I am no longer on Losartan and I can't remember why I quit it, but think it was because it did not continue to do me any good; maybe I should try it again. I am on fosinopril and metoprolol in addition to diuretics, digoxin and diabetic meds.
     By the way, my wife subscribed to a Dr. Bruce West's Health Newsletter and he stresses that CHF is primarily a beriberi of the heart or a deficiency of B vitamins, and says that CHF patients need to eat a lot of raw fruits and vegetables, flax oil, fish like a Mediterranean diet and if necessary take supplements made from whole foods. I have been taking this stuff for years and even though the regular medical docs keep saying I don't have much time (starting in 1990), I am still here and function with very low EF. It was 12% the last time it was measured by perfusion scan. He says one must treat the cause, not the symptoms, like the typical medical establishment. noel-palmer1@juno.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 Jon C.

Talk to Jon Site Index