The paperwork never ends The Archives
May 16-31, 2001 Archive Index

Lee R's 5-1 reply to Joe S' 4-30     activity with CHF
Russ B 5-1     seek Vo2max test results explanation
Jon 5-1     please reply
Cheri S 5-1     seek name of no-potassium salt substitute
Tracey C's 5-1 reply to Molly B's 4-30     low sodium angel food recipe
Cristina L's 5-1 reply to Lee R's 5-1     valve repair experience
Gino's 5-1 reply to Russ B's 5-1     technical stress test terms
Jon 5-3     I'm baaaack
Bev 5-3     seek advice on doctors, location, climate & more
Jerald 5-3     found cause of my itching
Joe S' 5-3 reply to Cristina L's 5-1     valve repair possibility, thanks
Mike J 5-3     test question, bronchitis
Jon's 5-3 reply to Mike J's 5-3     BNP test
Robin L 5-3     fractional shortening question
Earl 5-4     Agent Orange, diabetes
Henry T 5-4     update, good news
Mary H 5-4     rhythm problems, hope it's stress
Barb L S' 5-4 reply to Walter K's 4-30     cardiolite stress test questions
Bill D's 5-4 reply to Mary H's 5-4     that might be a heart attack!
Rodger 5-5     homocysteine levels
Phyllis W 5-5     Social Security Disability and part-time work questions
Herbert L 5-5     yoga experience
Jeanette W 5-5     some updates
Tracey C 5-5     low sodium cheese source
Walter K's 5-5 reply to Barb L's 5-4     cardiolite stress test experience
Dave F 5-5     has anyone taken Tikosyn (dofetilide)?
Josh 5-7     having trouble with Coreg
Dale C 5-7     my wife Ann awaits transplant - prayer request
Jim H's 5-7 reply to Dave F's 5-5     Tikosyn experience
Duane C 5-7     changing doctors can be great help
Duane C 5-7     seek CHF doc in Albuquerque, new Mexico
Joyce 5-7     do I need to see a specialist?
Jerald 5-7     lying on side, low salt education - questions
Doris R's 5-8 reply to Joyce's 5-7     Coreg, EF, doctors
Alexis S 5-8     seek CHF doc in southern California
Debra C's 5-9 reply to Jeanette W's 5-5     intro
Doris R's 5-9 reply to Alexis S 5-8     CHF diagnosis & treatment experience
Steve S 5-9     can strenuous workouts hurt me?
Debra C's 5-9 reply to Jeanette W's 5-5     keep in touch
Tracey C 5-9     exercising in heat, off meds
Hal 5-9     can these supplements hurt me?
Michael 5-9     seek younger CHFers to talk to
Sara 5-9     has anyone had a TEE? & more
Alexis A 5-9     update, found good doc & more
Linda Z 5-10     profound loss of appetite questions
Jon's 5-10 reply to Linda Z's 5-10     I hope others post also
Jack D's 5-10 reply to Hal's 5-9     condition-specific supplement formulas
Claire Simon 5-11     casting CHFers for commercial
Jon 5-11     page updates
Ginger's 5-11 reply to Michael's 5-9     young CHFers, update, prayer request
Autumn 5-11     update, meds, diet, cancer possibility
Jon's 5-11 reply to Autumn's 5-11     doctors, diet
Debra C's 5-11 reply to Linda Z's 5-10     loss of appetite possibilities & more
Debra C's 5-11 reply to Michael's 5-9     being the youngest CHFer
Donna Z's 5-11 reply to Sara's 5-9     stopping meds, being "cured" & more
Mary's 5-11 reply to Valerie D's 4-28     gaining weight, exercise questions
Joe S 5-11     to Tracey C and Steve
Joe L 5-11     is standing hard on anyone else?
Brandy's 5-11 reply to Michael's 5-9     young at diagnosis
Brandy 5-12     does anyone else get these pains & feelings?
Robin Lynn 5-12     seeking opinions on treatment options
Joy R 5-12     prayer request for Sarah F, update
Blake I 5-12     post-transplant, what happens off prednisone?
Carol O's 5-12 reply to Sara's 5-9     TEE experience
Jon 5-12     page updates and additions
LaRae T 5-14     BBB questions
Ginger 5-14     Joy, Sarah, prayer request & more
Anita C's 5-14 reply to Blake's 5-12     weaning off prednisone post-transplant
Stephanie's 5-14 reply to Sara's 5-9     TEE test
Christy P's 5-14 reply to Robin Lynn's 5-12     heart arrhythmia
Stephanie 5-14     memory loss question
Jeanette W's 5-14 reply to Joe L's 5-11     trouble standing still
Helen O 5-14     Diane Peters is in hospital
Jon 5-14     please reply
Jon 5-14     posts tomorrow and to Sara
Robin Lynn's 5-14 reply to Christy's 5-14     EP dox, ablations, questions
Pat Y 5-14     decisions
Michael 5-15     new e-mail address
Sharon P's 5-15 reply to Stephanie's 5-14     memory loss, concentration
Ben B's 5-15 reply to Robin Lynn's 5-14     trusting our dox and treatment
Jon's 5-15 reply to Ben B's 5-15     and to Robin Lynn
Sharon P 5-15     if recently diagnosd and feeling really down,...
Ben B 5-15     forgot to mention EF earlier
Julie G's 5-15 reply to Stephanie's 5-14     memory problems
LaRae T's 5-15 reply to Jon's 5-14     BBB
Maxine S 5-15     has anyone had this kind of ICD implanted?
William McChargue 5-15     seek salt sub with no potassium

Lee R's May 1 reply to Joe S' April 30, 2001 - Hi Joe and all, Regarding your leaky mitral valve and being tired, I was getting more and more tired recently and my latest echo showed more of a leak and the necessity for replacement down the road. That could definitely be a possibility. Stay tuned in to how you feel and maybe mow the lawn over 2 or 3 days instead of all in one. Oh, but when spring and the garden calls, I too succumb. Take care. Bestest, Lee.

Russ B, May 1, 2001 - Hi, Thank you for the information about Coreg; I was confused about it being an ACE inhibitor. I am taking Toprol at a dose of 200mg twice a day. I hope you or some of the good people can answer some more questions for me.
     I recently had a cardiopulmonary stess test (Vo2max) and I don't know what some of the results mean. I understand the Vo2 (which was 13%) but what do the following initials mean? FEV1, FVC and FEF. I obtained a copy of the test results from the place where I took the test so I could give them to my lung doctor yesterday. What a job that was! I almost had to yell and scream and stomp my feet to get it! I am glad my heart doctor is very up front with me about everything. I see her on May 9. Thank you for any help you can provide, Russ.

Jon, May 1, 2001 - Hi everyone, I have some questions that I would like some replies to - really. Medscape offers an online service where doctors upload information about their patients (medical records info) to a "secure" server and they then use "Medicalogic" software to analyze that patient info and share it with other doctors. The patient info is stored online, so to speak. At least, that's how I understand it; I could be wrong. My questions are:

  1. Would you be okay with your doctor uploading your medical records info to such an online service?
  2. Do you think a doctor should do this without permission from the patient concerned?

I have asked some CHF doctors about this and none have replied. These are doctors who usually answer my questions. I am very interested in your thoughts. Jon.

Cheri S, May 1, 2001 - Hi, I'm doing well staying on my no sugar,no salt, low calorie diet (most of the time). My doc said no to a salt substitute. Awhile back I remember someone on the forum talking about a salt substitute that contained no potassium but I can't remember what it was. If someone could let me know, I would greatly appreciate it. Thank you for any help you can give me. Cheri S.

Tracey C's May 1 reply to Molly B's April 30, 2001 - Hi, I made a great angel food cake this weekend from a recipe I found at; Really good. They have a bunch of great recipes. Take care, Tracey.

Cristina L's May 1 reply to Lee R's May 1, 2001 - Hi Lee and Joe S, I just had my mitral valve replaced 5 months ago and it's made quite a difference. Yes, I still feel certain symptoms but I can't tell you how horrible I felt before the surgery. I was very out of breath. We went to Disney World and the heat and the walking made me very dizzy and lightheaded. I had no idea what was really wrong with me until they did an esophageal echocardiogram which showed that I had a leak and a tear. The leak was 2+. I'm still recovering from the open heart surgery, which really took a toll on me but it was worth it. How bad are your mitral valves leaking?

Gino's May 1 reply to Russ B's May 1, 2001 - Hi Russ, FVC is "Forced Vital Capacity" which is all the air that you can exhale from your lungs. FEV1 is "Forced Expiratory Volume across one second of time" or the amount of FVC that you can exhale in one second. FEF is "Forced Expiratory Flow" which is the flow that you can exale in a series of rapid exhalations.
     All these parameters are measures of the "state" or "condition" of the bronchial tree (system) and are important to find and measure COPD. During a Vo2max test they help to clarify if effort impairment depends on lung disease - if your inability to exercise harder and longer is caused by lung dysfunction or on other factors (like a weak heart, lack of muscle tone, etc,...). Ciao, Gino.

Jon, May 3, 2001 - Hi everyone, Sorry for the lag in updating. My FTP server is having serious problems. My web host guy - Bill Moore - is working on it.
     I really need more replies to my Internet medical records post. I'll post results if I get enough replies. Jon.

Bev, May 3, 2001 - Hi, This is my first time writing but I have been reading all the posts for several months. My husband is not writing this because he no longer can write and speaks very little. He has seen a lot of doctors but in August I took him to a heart specialist who said he didn't think my husband had heart failure.
     In October he was rushed to the hospital and almost died from CHF. The heart failure is supposedly compensated but the brain damage from the hypoxia (at least that's what they say) is worse and he is back in the hospital. I need to move near one of our sons when my husband is released since I need family's help taking care of him. My choices are Orlando, Florida or Tucson, Arizona. I am leaning toward Arizona even though I have never been there because I think I will have more family support there.
     My question is which place has the best CHF doctors if there are any. Also, does the climate make a difference? Will the dry air and heat in Arizona bother him or make him worse? Has anyone else had this brain problem to this extent? Thanks for any help.

Jerald, May 3, 2001 - Hi folks, Yesterday my dermatologist finally found the cause of my intense itching and it's good news because now I know the cause - scabies, but the bad news is that my wife and I must go through the process of all-over Elimite cream and laundering all bed clothes 3 times at 3 day intervals. I am thankful it was not a reaction to any of my CHF meds. God is good.

Joe S' May 3 reply to Cristina L's May 1, 2001 - Hi, On my last trip to the specialist about a year ago, I told him I was sick and tired of not being able to walk up hills and wanted my valve replaced. He told me no way; that I would have to wait until I'm age 70 because it was invasive surgery and dangerous. I would have to live with my limitations. If I wait till I'm 70, it will be 65 years with a leaky valve. Oh well, I really don't like mowing the lawn. ;-) Thank you and Lee for your imput. I do have another appointment with the docs tomorrow. Joe S.

Mike J, May 3, 2001 - Hi, I just wanted to ask about blood tests again. I have some congestion caused by my cardiomyopathy and bronchial spasms. After seeing my PCP he upped my Lasix for 5 days and then wants me to have a BMP blood test next Monday and then see him that afternoon. I thought it was a BNP but I called them and they said BMP. I think I know what it is but wanted anyone's opinion on it.
     I have had a good deal of breathlessness sitting for awhile and then walking. It doesn't affect me when lying down or sleeping but I have had a bit of wheezing. I still go to the gym but the congestion is colored and my doc thinks it is bronchitis along with the cardiomyopathy. He says he hears fluid but it is very light and he does see some drainage in the back of my throat. I am using an inhaler and seem to be feeling better. As anyone who has had bronchitis knows it stays with you but I just wanted to get some feedback. I always am afraid i am getting worse and I guess I need some support and prayers. Thanks again and God bless all!

Jon's May 3 reply to Mike J's May 3, 2001 - Hi Mike, I have never heard of a BMP test but the BNP test is described at My new routine blood tests page is taking me a long time due to me having to relearn a lot of basic chemistry and biology. :-( It will be the most heavily researched, time-intensive page I have ever done but I hope that it will have been worthwhile when complete. Jon.

Robin L, May 3, 2001 - Hey everyone, I haven't written in a long time but wish everyone well and try to keep up with you all. I am wondering what "fractional shortening" means on an echo report and what it means when it is lower than the normal. Thanks for any help you can give. God bless.
Jon's note: See Medspeak ;-)

Earl, May 4, 2001 - Hi, The VA has decided that Type II diabetes can be caused by Agent Orange so anyone exposed to it (you no longer have to prove exposure to Agent Orange, only that you were in Vietnam for 90 days) is eligible. I am a Marine combat veteran, Vietnam 1969, and I applied for benefits yesterday. The VA said they will be looking at everyone's claims in July. Any veteran who has Type II diabetes may want to go to the VA and see a benefits counselor. I would suggest that any vet who was exposed to Agent Orange be tested for diabetes. Statistics suggest that 1/3 of diabetics don't know they have it; that is why it is called the silent killer.

Henry T, May 4, 2001 - Hi, It's hard to believe that another year of living successfully with CHF has gone by. This week is the third anniversary of my original diagnosis - CHF due to DCM - and things continue to go well. My EF is up to 40% from 15%, and I have few or no restrictions in terms of activity and exercise. I'm still on the usual meds: Coreg, digoxin (Lanoxin), prinivil and spironolactone (Aldactone), and they seem to be doing their job very well.
     About a month after my original diagnosis, I was implanted with an ICD and to everyone's pleasant surprise it has yet to be needed! As many contributors to this page have said repeatedly, I credit much of my progress to a positive attitude and strong faith. On Monday I will earn my Master of Divinity degree and in September I will leave the field of public education after 31 years to begin a second career! To paraphrase Garrison Keillor, "Be strong, keep well and do good works." It works for me, Henry.

Mary H, May 4, 2001 - Hello to everyone out there, I have a check-up appointment for next Tuesday. This comes none too soon since my ticker has been acting up in the last couple of weeks. I have been unfortunate enough to have skips and flutters that wake me from sleep and actually make me almost fall out of bed. My chest feels like a bowling ball is sitting on it during these spells. I keep telling myself that it is the heat, stress, and everything I can imagine just to get my mind off of the fact that it is my DCM surfacing again.
     My 6 year old son keeps me hopping with T-Ball games and practice, doctor trips, and everyday routine. He began Ritalin today and counseling next week for ADD. He has an attention span of about 2 minutes and it requires effort to keep him occupied. Gardening and lawn work are our two things we keep busy with in the afternoons and I practice baseball throws, hits and everything except the running with him almost every night. So maybe stress is the culprit and not the DCM rearing it's ugly head. Prayers for everyone, Mary H.

Barb L S' May 4 reply to Walter K's April 30, 2001 - Hello Walter, I haven't been here for a very long time. Actually, I have come to find out the side effects of Toprol XL, Lopressor, and also information about a test I had done this past Wednesday. My experience with Toprol XL so far has been good except for tiredness and dry mouth. However, I was just put on this a few weeks ago at the hospital. I also have another medical condition that causes extreme fatigue, so I chalked it up to that. I did feel an immediate difference though, once Toprol was in my system for a few days. I doubt if this helps you much but I saw your post and wanted to let you know that it just seems to be a side effect.
     Also; can anyone tell me what the "Adenosine Cardiolite Stress Test" is? If you've also had this test done and if you had really terrible side effects during the test or something, please let me know. It's the first time I've ever gotten this scared during a procedure. I felt like someone was attempting to smother me, with pressure on my chest and palpitations. I am still going to look for the medical jargon of it all but personal experiences are what I need now. God bless, Barb L. S.

Bill D's May 4 reply to Mary H's May 4, 2001 - Hi Mary, Have you told your cardiologist about that bowling ball on your chest? It may be a heart attack! Do you have nitro pills to disolve under your tongue? Do they help? If they help, you were having a heart attack! Bill D.

Rodger, May 5, 2001 - Hi, At age 45 I had my heart attack. It took 3 defibs to get me back! I am a fit police officer: not over weight, have low cholesterol, don't smoke, drink moderately, and am on a low fat eating plan but this still happened to me.
     One year later I am off all major medications, walk daily , and spent all last year recovering. I am writing this to remind everyone that the homocysteine level in the blood can sometimes predict heart attacks, especially if you have no other major risk factors. If this sounds like you, ask your doctor to do this blood test. High homocysteine can be treated with folic acid tabs and a B vitamin called pyridoxine. Maybe it would stop you from having further heart attacks. Cheers from New Zealand.

Phyllis W, May 5, 2001 - Hi, Has anyone tried working part-time while drawing Social Security Disability. If so, were you still able to draw the full amount of disability? Also, did anyone go back to work part-time after having a transplant?

Herbert L, May 5, 2001 - Hi, Yoga? You bet. I started yoga last year at the community college and really enjoyed it. The instructor was well versed on our lack of ability and for those with medical problems, he understood. There were several things that we should not attempt if we have heart problems and he explained that, so we got along okay. The feeling of well being after the class and the feeling that we were improving in our physical movements were great. When I started I was at the stage of crossing my legs at the underside of the knee of one leg, over the top of the knee of the other leg. Now I cross either leg like I did as a younger man, with my ankle over my knee. Little things like that really give a person a very good feeling. Now I take yoga from another person who is into breathing and meditation as her main thing. I would sugest this type yoga instructor first. Just think that it's your ride and your driving when it comes to yoga. It's not a team sport and your body tells you how far you can go. Luck, Herb.

Jeanette W, May 5, 2001 - Hi everybody, Just an update on me. I went to a new cardiologist last week and he is very good. He says I am doing well with my DCM and am stable. He does want me to take one aspirin a day to thin my blood. Also, he would like to up my Coreg to 25mg twice a day. He is going to set up an appointment for me to see the Regional Transplant Center as well. I go back for an echo on the 17th to see how my heart and EF are.
     I also went to a liver specialist about my LFTs and he said they are fine even though they 300% above normal. He said if they don't go up any more then don't worry about it and to forget getting a biopsy done. He thinks it is an unnecessary procedure in my case. I am to have my blood levels checked every 6 months. I am soooo happy I am jumping for joy! (SOB) through too much jumping. <g> I am praying for all of you and hope you have a great summer! Love to all, Jeanette.

Tracey C, May 5, 2001 - Hi everyone, I found a site that sells real mozzerella which is naturally low in sodium. They also sell salt-free ricotta. I think the mozzerella has only 15mg an ounce and it's called the "Latte." Each cheese gives a description of the sodium in it. The site is Have a great weekend everybody, Tracey.>

Walter K's May 5 reply to Barb L's May 4, 2001 - Hi Barb, I don't know about the adenosine part but I have had a cardiolite stress test - more than one. Yes, I did have a pressure feeling in the center of my chest during these. I was told by the doc that I now knew what a heart attack - or the typical early chest pains of one - would feel like, because the test stresses the heart in a similar fashion. I think there is some risk but there is supposed to be a cardiologist present during the test and I don't think the risk is very high. They can reverse the effect pretty quickly with other meds if needed. Walter K.

Dave F, May 5, 2001 - Hi, Does anyone have experience with the drug Tikosyn (dofetilide), used to help control arrhythmias like a-fib? I am a ventricular tachycardia patient with an implanted cardiac defibrillator and have been on numerous drugs, the latest of which is Betapace (sotalol). This drug causes me extreme fatigue and lethargy. I have found it unacceptable since I usually lead an active life, being 58 years old and retired. My electrophysiologist has suggested the use of Tikosyn and plans to hospitalize me for 3 days starting May 20 for acceptability/tolerance trial with this med. Does ayone have any comments? They would be much appreciated. Thanks, Dave.

Josh, May 7, 2001 - Hi Gang, Well, four years ago my doc put me on Coreg and it made me feel so wretched that he changed me to Norvasc and Vasotec. Three months ago, my CHF put me back on Coreg. Well, I managed the fatigue thing okay but I noticed a big decrease in kidney function at 25mg of Coreg along with easy bruising, and my ankles that have never swelled started looking like footballs. I doubled my Lasix to kick my kidneys into gear and it worked but my stomach rebelled. So at this point, I'm back to 12.5mg a day and I think I'll get off altogether. I think I'll try anything if my quality of life is not compromised. I haven't posted lately but I'll tell you, I'm so impressed with the courage and spirituality of much younger people with this albatross. Keep fighting and keep your chin up!

Dale C, May 7, 2001 - Hello Everyone, My wife Ann Chambers, has been a regular reader and has posted to this message board several times. Last Friday she has been put on the heart transplant list at Barnes-Jewish Hospital in St. Louis, Missouri.
     After several years with cardiomyopathy we met some wonderful doctors at Barnes that nearly turned Ann's life around until about 6 months ago when she had a virus attack the right side of her heart. Since then it has definitely been a downhill slide. She is lying there in bed waiting for a new heart. Her spirits are good and we are well aware that God is by our sides. We have already seen some miracles take place in our lives and those around us, so we know He has a plan.
     We would appreciate all of your prayers. Thank you, Dale Chambers.

Jim H's May 7 reply to Dave F's May 5, 2001 - Hi, I was put on Tikosyn last month and felt great, the best I had felt in over a year. I went back to the doctor after 2 weeks and found that I was back in atrial flutter and going in and out of a-fib. The doctor took me off the drug since it didn't seem to work. I have been on amiodarone (Cordarone), Betapace and a couple of others but none seemed to work very long. I guess you could say that I am in permanent a-fib, controlled somewhat by a dual chamber pacemaker. I have also had my mitral valve replaced. I hope your experience with Tikosyn is good. Like I said, I felt my best when I was on it. If it were not for some of the other risk factors in Tikosyn, I would ask my doctor to put me back on it. Jim.

Duane C, May 7, 2001 - Hi everyone, I finally did the right thing and changed doctors. My last one just wanted to leave things alone even though my heart rate would plunge into the 30s a lot of the time. I am now with a doctor who has a full heart facility behind him. They implanted a pacemaker/difibrillator in me and increased my Coreg back up to 25mg a day. It is wonderfull to not be just dragging all of the time. I have been able to do more activity in the last month than the last 2 years combined. I am back to my back being my limiting factor. I wish I could get my back fixed as well as my heart.
     I just want to remind everyone again - if your doctor is not doing what he should - Change! Thanks to Jon's Place, if you read everything here, you will know what to expect from a good doctor. It is hard breaking such a bond, especially if the doctor is likeable, but it is worth it. Duane.

Duane C, May 7, 2001 - Hi again, I forgot to ask. I am moving to New Mexico in June, do any of you know of a good cardiologist in Albuquerque? Thanks, Duane.

Joyce, May 7, 2001 - Hi, I hope you guys do not think this is a stupid question but I was diagnosed with CHF in February of 1999. The last time I saw a heart specialist was in August, 1999. My stress test and MUGA test were both normal, showing no evidence of heart damage. My EF went from 15 to 35%. I belong to an HMO. The heart specialist told me he did not need to see me anymore unless my primary doctor thought I should. Because everything looked okay he did not want to do another echo because he said it was more important how I felt than what a number showed on an echo. Since then I have only seen my primary doctor. He listens to my heart and lungs and does the routine blood and urine tests. My only symptoms are extreme tiredness sometimes, especially when I move my arms a lot. This is no better or worse than I felt in August of 1999.
     Am I being stupid for not seeing a specialist? Does my primary doctor need to be doing more tests? I am really more or less housebound most of a month.

Jerald, May 7, 2001 - Hi, Being quadriplegic (C4,5 and 6), I already have a breathing problem. Just recently a nurse told the doctor (that's the way it is here, I live in a convalescent center) that I wanted to know why I was getting so congested and he said that I have CHF. Can anybody tell me why I get congested lying on my right side but not on my left when I try to sleep? I'm trying to lose weight and I avoid salt - can someone point me to some required reading material? Jerald.

Doris R's May 8 reply to Joyce's May 7, 2001 - Hello Joyce, If I were you, I would get a second opinion. Perhaps another doctor would respond differently. I was diagnosed in August of 1998 with an EF of 10%. After 6 months on 25mg Coreg twice daily, my EF went to 30%. I was also told by my physician that Coreg may stop the advance of CHF and improve your heart health, and in some cases total recovery is possible. I know of two patients where recovery was a result. At least ask your doctor about Coreg. Be very careful now - your health needs special attention with this disease. I bid you kindness, joy, love, and happiness. Doris R.

Alexis S, May 8, 2001 - Hi, I was just diagnosed with CHF about a month ago and my HMO is really messing with me. They will not pay for me to see the docs I had in the hospital. They want me to return to my PCP, whom I no longer trust because she misdiagnosed my CHF as asthma and almost killed me. I'm going to see a cardiologist tomorrow and pay for it out of my own pocket but I wanted to ask if anyone knows of a good CHF doc in southern California?

Debra C's May 9 reply to Jeanettes W's May 5, 2001 - Hi Jeanette, I'm glad you are doing better. I am new at this site. I have had CHF for 2 years almost but I am not doing so well now. I have a doctor at the Veteran's Hospital who is my primary care physican. I have no cardiologist. My husband is 100% disabled because of his back and that entitles me to be seen free of charge at the VA. I am 43 years old with CHF and left bunch brandle block, and also a heart murmur. I had a heart cath in November of 1999 but it showed no blocked arteries and my ejection fraction was 20%. I had an echocardiogram in October of 2000, which showed my EF to be 25% but the doctor told me that some blood had started to pool inside my hear chamber. Thanks for listening to my story and Jon, thanks for having this site. Debra C.

Doris R's May 9 reply to Alexis S' May 8, 2001 - Hi Alexis, I am not saying that it is all right but many doctors misdiagnose CHF as asthma or bronchitis. I believe I was misdiagnosed for 3 years. My PCP got a partner and she took over my care. My feet were swollen for 2 days and were then normal by the third day, during my appointment. You see, I thought it was my blood pressure. Well, she thought otherwise and she did all kinds of tests and x-rays, you name it. I began to regret going to the doctor but that was when I was diagnosed so I also credit her with saving my life.
     She referred me to Cardiology Specialists Medical Group, Inc. They are MDs and FACC. My EF was 10% and I was considered a candidate for heart transplant. They started me on Coreg and several other medications. I am no longer a candidate for transplant at this time. I am very pleased with their group. They have 4 California locations in the Inland Empire - Riverside, Loma Linda, Moreno Valley, and Banning. Is this any help to you? I hope so.
     I credit my PCP with saving my life and I credit the cardiology group for keeping me alive. I thank God for their specialty and devotion. Kindness, joy, love and happiness to you, Doris R.

Steve S, May 9, 2001 - Hi all, This is my first time posting. I am a 48 year old diagnosed with DCM and CHF in September, 2000. I have had a-fib for 10-15 years. I take 100mg Coreg, Accupril (ACE inhibitor), Coumadin, digoxin (Lanoxin) and Lipator each day.
     My concern seems minor and I am sure it's one that most of you would love to have. Although I have an EF of 20% my Vo2max test result is normal. I am a Masters swimmer and with the drug regimen that I am on, I am able to complete a very strenuous workout (2 miles of hard swimming in 90 minutes) on a good day. The only thing that slows me down is that if I am feeling lightheaded from my meds, I stop. My question is whether these strenuous workouts hurt me. Should I cut back some or go all out when I can?
     Thanks for indulging me with such a question. I pray for all of you, most whom I know are far worse off than me.

Debra C's May 9 reply to Jeanette W's May 5, 2001 - Hi Jeanette, I got your reply. I have swollen feet, ankles, legs, eyes, and stomach. I was wondering if you are having these same symptoms. Mine happen every month and last about 7 days. My husband thinks this disease is not fatal but he may just not want to think of it as a death sentence. I try to have a positive attitude and I pray to God every day to let me get through the day. I will pray for you and your family. I thank you again for replying to my e-mail. Please keep in touch with me if you feel like it. I know I have good days and bad days and you also. I look forward to hearing from you again. God bless, Debra.

Tracey C, May 5, 2001 - Hi everyone, Well, being off meds was going really well until last night; All my fault really. I went on my walk but it was about 100 degress out. Even though I went much slower than usual, about halfway through I started to feel really bad and continue to feel bad today. I've had a really high pulse and it feels like something is gagging me, pretty much just an all over bad feeling. I'm going to wait a couple days before I call the doctor but have definitely learned that walking in the heat is not such a good thing. When the doctor took me off the meds, he said I didn't need another echo for 6 months. Does that sound right? If it was up to me, I'd be in there today for one. I'm sure this will pass. I hope everyone is well and God bless, Tracey.

Hal, May 9, 2001 - Hey everyone, First time in the forum. I was diagnosed in January with CHF. At the time I weighed around 270 lbs, had trouble breathing and sleeping, and my whole lower body was swelled up like a water balloon. The doctor perscribed Lisinopril and furosemide. Today I'm at 208 lbs, sleeping like a top and breathing normally for a person with hay fever in May heat. My blood pressure is that of a 20 year old, according to one doctor. I have changed my diet to natural foods, eat much smaller portions, watch sodium, ect,... I look and feel better then I have in years. I am now on a waiting list for a CHF specialist. It will be 10 to 12 weeks before I see him.
     In the interval, would it hurt to use dietary supplements? I have four "condition specific" formulas from Swanson: kidney, liver, heart, and brain. Can you overdose on this stuff? I now have the same unbridled enthusiasm for helping myself that I had for harming myself. Could these supplements harm me? Anyone?

Michael, May 9, 2001 - Hi, I am a 29 year old Gulf War Veteran. I was diagnosed with dilated cardiomyopathy about 2 weeks ago. I've always been in relatively good health and have no family history of this or any other type of congenital heart disorder. The doctors I spent a week and a half with at the VA hospital all seemed very interested in my case due to my age and their inability to find a direct cause for my heart failure. They seem to believe that it was most likely due to some sort of viral infection.
     I've taken to calling my affliction "Grinch Disease" since my heart is 3 times its normal size. I guess being a generally grumpy guy is just as good a reason as any for my condition. If anyone knows of someone my age with a similar condition, I would love to talk to them. I felt very odd when I was in the hospital and the man closest to my age on the ward was 30 years my senior.
     Don't get me wrong, I don't wish this disease on anyone of any age. I would just feel a bit more "normal" if I knew someone else my age who is going through this too.
Jon's note: Have you checked Me Too?

Sara, May 9, 2001 - Hi everyone, In January of 1999, when I was in heart failure due to cardiomyopathy, my EF was 25% and I was put on all the meds needed. In November of 2000 a new doctor said my EF was up to 55% and I did not need any meds and took me off them. Since then I have declined slowly, with shortness of breath and fatigue, My EF dropped to 38%. I was hospitalized 2 weeks ago for transient ischemic attacks or mini-strokes and I have been through a battery of tests. I'll be on a 30-day monitor and will have a transesophageal echocardiom with a tube inserted via my throat to my heart while under sedation. This is being done by a wonderful group of cardiologists, whom I am now seeing.
     Has any one had this procedure (TEE) and are there any risks involved? Also, can one still be in heart failure even though their EF goes up to the high 30s? This forum is without a doubt the best place to be for caring and supportive friends. God bless all, Sara.

Alexis A, May 9, 2001 - Hi all, I saw a new cardiologist today at my own expense because my HMO would not pay for it. I really like this guy. He spent a lot of time with me, explaining things in plain English. I went prepared with full copies of my medical records, a complete listing of meds, a family medical history and daily log of my daily BP, pulse and weight from the last 3 weeks. It helps to be organized. Luckily, it is open enrollment time and I only have to make it through the next 7 weeks until I'm out of the HMO and into a standard 80/20 plan.
     My EF is 25% and based on the way Coreg, furosemide and zestril have worked so far, the doc says I should be able to make it over the next 7 weeks without any major problems; no guarantees, of course. Wish me luck. ;-)

Linda Z, May 10, 2001 - Hi all, I don't post much as my cardiomyopathy is somewhat different from most. I have restrictive cardiomyopathy secondary to radiation treatments that I received almost 30 years ago. I have class 3 to 4 heart failure but look great and function pretty well, partly because my systolic function is well preserved. It is my diastolic function that is impinged upon. Because of the restriction, my heart muscle doesn't relax enough to allow the ventricle to fill with blood. I take the usual heart meds - Cozaar, Atenolol, Lasix, Imdur, Spironolactone, and K-Dur. The Lasix and spironolactone help with some of the symptoms of heart failure, while all the others are somewhat experimental in my case since no one really knows whether these help with restrictive disease caused by radiation.
     My question today - and I do have one - is whether other people on similar medications or in the same stage of heart failure have experienced profound weight loss and loss of appetite. Since August, I have lost 40 pounds. This is a good thing since I needed to lose the weight but it is also a mystery since the reason for the loss is a profound loss of appetite. We have investigated a number of avenues for the loss of appetite and none have panned out. Now I am wondering about the various meds I am on and the heart failure itself as a possible cause. Any similar experiences out there?

Jon's May 10 reply to Linda Z's May 10, 2001 - Hi Linda, This sounds like cardiac cachexia. Here is one possibility to look into although I have no idea if it has any bearing on your situation. Low serum potassium level can cause loss of appetite - normal range is 3.6 to 5.4 mEq/L. You don't mention digoxin but too-high digoxin level can cause severe loss of appetite. I hope someone who has looked into this can comment, since I am sure meds can be a cause but I am out of time right now. This is the month my daughter ends her high school career and we're overloaded, plus I have to fight the county assessor's office a week from now and have to be taking pictures, getting film developed, getting reports lined up and in one case, written. So it goes with big gummint,... ;-) Jon.

Jack D's May 10 reply to Hal's May 9, 2001 - Hey Hal, I'd read the label a little closer on those "condition specific formulas" from Swanson: kidney, liver, heart, and brain. I think you'll find that they are really: "The four frozen dinners that nobody wants to eat." But, in general, most multiple ingredient or condition specific formulas are nothing but a waste of money because they don't contain sufficient amounts of the different vitamins and minerals to actually do anything. A lot of them contain herbs which haven't been proven to do anything and that might be dangerous.

Claire Simon, May 11, 2001 - Hi, I am a casting director in Chicago and am working on a commercial for Pharma. We are looking for people in the Chicagoland area who have had congestive heart failure for a national commercial that shoots the 22nd and 23rd in New York. If anyone is interested in coming in, we will be seeing people Monday, May 14. We will just ask you questions about your how you developed the disease and how you have treated it. This is a national commercial, so the potential to make some good money is possible. Please feel free to call my office and ask for Teresa and she can answer any questions you may have. You may also feel free to call the Illinois Film office to make sure we are a legitimate office.
     The company is Claire Simon Casting, we are located at 1512 N. Fremont number 202, Chicago, Illinois. Our phone number is (312)202-0124. Hope to hear from you! Claire Simon.

Jon, May 11, 2001 - Hi, The following pages on my site have been updated:

  1. Medspeak
  2. CHF Text Files page
  3. Desktop Wallpaper page
  4. Target Dose FAQ page
  5. Let's Cook
  6. Nutrient Stew - Herbs
  7. Nutrient Stew - Nutrients
  8. Nutrient Stew


Ginger's May 11 reply to Michael's May 9, 2001 - Hi Mike, On my forum are a couple of people that are young. One is younger then you at 23, and the others are 31 and 33. I am not sure about a few others. The ones I just mentioned are females, if that's okay with you. <g> There are men there too but I'm not sure they are as young as you. They may be old like me, in their 40s. <g> Anyhow if you would like to check them out to talk, the forum is located at, then just go down the page and click on "message board." I am sure there are some young people here too. Look at Me Too, like Jon says.
     A quick update on me: my ribs are finally healing and I got sick of all the pain meds and just stopped most of them cold turkey. Don't try this at home, folks! ;-) It threw me into instant withdrawal but I suffered it out for about 4 days and finally feel almost human again. What I will do for the back pain I don't know yet. I am on a really low dose of pain meds right now just to keep it from driving me nuts but I wanted off the drugs since one was on the news, Oxycontin. It has been a rough 3 to 4 weeks here but I can see the light finally, so to speak. As for the old heart, no clue. With the rib thing I didn't get the chnace to go check out the CHF clinic and still have a checkup due on the 23rd with my regular cardio doc. If I still feel like he is not being aggressive at all and I walk out with the same or more uncertainty than when I walked in, I will go home and call the CHF clinic. I will get some past test results while I am there though, so I have them to have to take with me, like the last 2 years of echos.
     I just wanted you all to know I am still around but why I have been so silent. I see a lot of new faces here so welcome all newbies. You have found the best place on the Net for DCM and CHF. My forum is tiny compared to this one and I send most of the people from mine over here to read The Manual anyhow. ;-) Stay well, y'all. Hugs and prayers, Ginger.
     PS. Please say a prayer for Sarah F, who is going through some really rough times right now as far as her heart is concerned and I know she won't ask, so I am asking. Most of you who go to chat know her.

Autumn, May 11, 2001 - Hi all, I am feeling some anxiety. Yesterday I was told I need to go off my hydrazaline because it may be a factor in my foot neuropathy, and it may be causing lupus. Hydrazaline was the only drug I could take for my heart to which I wasn't allergic. Now I will have nothing I can take. My card says if I go back into heart failure they will try Ace II inhibitors (ARBs). They want to save that drug till then as a chance to pull me out heart failure before I become allergic to it too.
     I pressed my PCP for an answer about what all the lumps are all over my thighs. I thought it was cellulite. He said it is cysts but won't discuss it till I go back in 2 weeks. I told him that at my next appointment I want to know the facts about what is going on with my health since all winter he has been telling me to come back in a few weeks. Also, I was told in November that I should get a colonoscopy but I've kept putting it off. Now I was told that in November some abnormal cells had shown up and that I must get the test done as soon as possible and that it is possible I have a tumor or colon cancer.
     I guess they didn't want to worry me if there was nothing to worry about but I sure wish they had told me. I've had surgery before for a precancerous condition. I feel like my whole system is determined to go to pot. I have the feeling I'm not gonna be here a long time. I certainly don't like that idea but over the past year I have come to terms in great part with that, and have come to a space where I am happier and enjoy things on a different level. Whatever is going to be is going to be, so I may as well spend the time well. I am worried but I am still grateful that at this time my heart seems to be doing quite well.
     Oh, since I can't take meds, I am to start a strict low-fat, low-carb diet, high in fruits and veggies, Xenical and phylism for fiber and fat absorption, and will also be taking high dose niacin. All this should lower my weight, BP, and cholesterol. I've got a lot to learn so I can stick to it well. Autumn.

Jon's May 11 reply to Autumn's May 11, 2001 - Hi Autumn, I am sticking my nose where it doesn't really belong but if a doctor told me, "I'll tell you what's up in 2 weeks when you come back," I'd fire his sorry self on the spot and get another doctor. That's an absolutely immoral act for any doctor. For what it's worth, a low-fat diet may not be as good as a high MUFA diet. See the new article on Nutrient Stew. It's not fat that's bad - it's what kind of fat you eat that matters. Jon.

Debra C's May 11 reply to Linda Z's May 10, 2001 - Hi Linda, I went through the same thing you are going through, losing weight. My doctor lowered my digoxin (Lanoxin) down to 0.25mg and I have managed to go from 124 lbs back to my normal weight of 149. If you take it, ask your doctor to lower your dose of digoxin. Your doctor might also refer you to a nutritionist. They can also help a lot. I am a 43 year old female with CHF and LBBB.
     Good luck and God bless. I am just learning a little bit every day how to use the computer so I hope this makes it to you. Debra.

Debra C's May 11 reply to Michael's May 9, 2001 - Hi, I have CHF and cardiomyopathy too, as well as left branch bundle block. I am 43 years old and am being treated at the Veteran's Hospital. I am the youngest person there, let alone a woman. My husband is 100% disabled and that is why I am seen there under the Champus program. I am so grateful for the free care and free medicine. I feel strange being the youngest there too. I am seen in the Green PCC Clinic so you are not alone. At another hospital I was seen in before the VA, the youngest person there was a woman 50 years old. There are a lot of young people with CHF, though. Take care, Debra.

Donna Z's May 11 reply to Sara's May 9, 2001 - Hi Sara, Are you seeing a CHF doctor? If not, please find one and get a second opinion. From what I have been told, just having your EF go up does not mean you are "cured." It can just mean that your medicines are working properly to allow your heart to work more strongly. Going off the medicines can cause your heart to once again have to work harder, causing you to feel not so good again, especially if you see edema and SOB again. Just my 2 cents, Donna.

Mary's May 11 reply to Valerie D's April 28, 2001 - Hi, I'm worried about exercise too. I've gained a lot of weight over the last year and while that's not the end of the world, I don't necessarily want to see this trend continue. I would like to just walk around the block even, but the fact is that I get out of breath walking from my front door to my car. I wondered if taking it really slow would be possible? In the meantime, I think I will check into yoga or tai chi as a form of exercise. There's also that woman on television who does the "Sit and be Fit" show, which might be doable for me. Any suggestions?
Jon's note: Don't forget to read Heartbytes I and II

Joe S, May 11, 2001 - Hi Tracey, Me too. I went on a 1½ mile walk in the desert heat and felt weak for 2 days. We gotta stop doing those stupid things. Fortunately there's no humidity where I live.
     Steve, in my humble opinion, strenuous exercise can be very good. Read my bio. My heart condition disappeared for 20 years because of hard strenuous exercise. I only wish I had kept it up. Joe S.

Joe L, May 11, 2001 - Hi, I often get very fatigued from standing in one place to long. It happens a lot in church and often when I go to the mall with my wife. Does this happen to anyone else? Just curious to find out. Thanks.

Brandy's May 11 reply to Michael's May 9, 2001 - Hey Michael, and everyone else, I am 21and was age 20 at diagnosis. My EF was 30%. Now it is 50% but I feel like poop a good amount of the time. Mine is for a different cause. We wanted to add a second baby to our family and in addition to doing that, it blew up and weakened my heart. I would love to be here for ya! Brandy.

Brandy, May 12, 2001 - Hi, I have a 50% EF, up from 30%. My heart size is normal and I feel decent although not normal, of course. Today, out of the blue I started having pains behind my ears deep in my neck, with dizziness, chest pain, palpitations and shortness of breath. I have each of these symptoms off and on but never a sudden attack of them or all of them at once. Does anyone else ever get clobbered out of nowhere with icky feelings? I'd appreciate any words, Brandy.

Robin Lynn, May 12, 2001 - Hey there heart friends, I am posting to get an opinion from those of you who have been there, and to see what you all think about what I am thinking. Here is the background. I have cardiomyopathy and recently CHF symptoms have set in more. My problem is that I have arrhythmias. It is documented to be wide complex VT. I also have a small hole in my ventricle wall and possibly in my atrial wall as well. I have done a lot of research on this and they say that whether the hole is fixed or not, the risk of developing arrhythmias doesn't change. My docs say it is so small it is not of concern but then why is my heart wearing out in the third decade of my life?
     Here's what I want your opinion on. The episodes of VT can last a few seconds or go into hours of other symptoms that feel like a heart attack. Ischemic damage shows on my cath and stress test. I have 2 children, ages 5 and 9, and I am considering requesting a defibrillator in lieu of arrhythmia drugs and more ablations. I feel a lot better in some ways since my ablation but worse in others. My thinking is that if this VT thing decides to go into ventricular fibrillation, my only way of guaranteeing I survive is by having an ICD.
     I am 37 and still searching for a CHF doctor. My heart continues to enlarge although my EF is a bit higher and that seems to be all my doctor looks at. What are your thoughts on this? I will consider all replies and give them great thought and prayer. Thank you and may God be looking after each and every one of us, Robin Lynn.

Joy R, May 12, 2001 - Hi, I have just gotten out of the hospital after 11 days and am still very weak but wanted you folks to know that Sara F is also sick. She had another heart attack and a bout of CHF, I think on last Thursday. I talked to her by phone today; we are such good long distance friends. Please pray for her since she may be facing surgery at the Cleveland Clinic. It has been bad for me also but I hope things will finally improve more for me. Thanks, Joy R.

Blake I, May 12, 2001 - Hi, I had a heart transplant in August of 2000. The doctors are going to be taking me off prednisone next week. I am wondering what effects I should look for going off prednisone. I have been on 5mg for a few months now. Blake.

Carol O's May 12 reply to Sara's May 9, 2001 - Hi Sara, I had a TEE 3 years ago when my mitral valve was leaking excessively, and I had to have a lot of tests before I had heart surgery to repair my valve. I don't remember anything specific about the risks of the test because I just trusted my cardiologist and I had no problems with the procedure. I only remember that I was very nervous about having a tube in my throat and about how painful the test might be. I really had nothing to worry about however, because they gave me drugs to numb my throat and I had very little pain.
     I've had an EF of 15% to 20% for the past 3 years so this test did not help or hurt my heart. The only suggestion I have for you is that you should definitely have a friend or family member with you during the test. They can ask questions of the doctor and you won't have to worry that you will miss anything the doctor tells you. Good luck with your test, Carol O.

Jon, May 12, 2001 - Hi everyone, I updated The Manual today. If you spot any mistakes, please let me know. I also have the routine tests page close enough to completion to put up, although it is still under construction. Jon.

LaRae T, May 14, 2001 - Hi, I have been away from this site for awhile and it is good to be back. I enjoy reading everyone's comments and updates. I am going in for a stress echo and a pulmonary lung test next Thursday since I have been feeling weak and unable to do anything. I was told by my MD after she did an echo test in her office that is was difficult to read because I had a branch blockage. I looked it up under medspeak links and was surprised to see that it said it can lead to death or damage of tissues. Can anyone enlighten me? Jon? What exactly does this condition do to a person and do I need to worry about it? LaRae T.
Jon's note: I'm still trying to find where it says that on my Medspeak page. I don't see it. I did just add an article on BBB for you (and everyone) as a text file. See this page.

Ginger, May 14, 2001 - Hi, I notice Joy W asked for prayers for Sarah F, but didn't any for herself. Please say a prayer for Joy also, she is very sick. The 2 of them were the very first friends I made here at Jon's Place when I first found this place 3 years ago. They are the best. I talked to Sarah last night and she said to say hi to those to whom she usually talks and chats with. She will know Monday if they are going to transport her to Cleveland Clinic. They are waiting on the surgeon to get back in town. One of the surgeries they are considering is the net around the heart. So please say prayers for both of them. This is the only downfall I found about a forum like this and that is watching those you love go through this stuff. It's so much harder when you're so far from them and can't even just give them a real hug. Stay well, you all. Hugs and prayers, Ginger.

Anita C's May 14 reply to Blake's May 12, 2001 - Hi Blake, I had a heart transplant on April 6, 2000. I have been weaned off prednisone and am doing fine. I was also weaned down to 5m. a day for a couple of months, then completely off for a month, then had a heart biopsy, which revealed no rejection. So far, so good, off the Prednisone. Plus, I have lost the "moon face" look, which is great! Good luck to you, Anita C.

Stephanie's May 14 reply to Sara's May 9, 2001 - Hi Sara, I was nervous about the TEE test too. It wasn't fun, but really wasn't that bad. The worst part was the taste of the stuff they spray in the back of your throat to numb it - awful! They drug you up and it is somewhat uncomfortable for a few minutes, but not painful. The nice part is that the doctor is right there and has plenty of help around. I got the results of the test right away. It was nice not having to wait for results. You're in my prayers, Stephanie.

Christy P's May 14 reply to Robin Lynn's May 12, 2001 - Hiya Robin, I thought I'd put my 2 cents worth in, which is to say you need to get a CHF doc and also consult with an electrophysiologist cardiologist (EP doc). The EP doc is the authority on arrhythmia and how to control them via meds, ICDs, ablations or combinations of the above. An EP doc may do an EP study on you, which provides them with information on where the arrhythmia is triggered in your heart. Each person's arrhythmia is specific to their condition and body. You are absolutely right in thinking that the ICD is the only therapy that will attempt to get your heart back into normal rhythmn if it enters sustained V-fib, other than external paddles. The drugs are intended to prevent the heart from entering an arrhythmia. However, it is not unusual for someone to have an ICD implanted, and start or continue a regime of anti-arrhythmic drugs. I hope you can find a doc and EP specialist soonest. Christy P, age 42, 20% EF, ICD.

Stephanie, May 14, 2001 - Hi, Does anyone else experience memory loss? If so, how do you cope or adapt? It is really frustrating and discouraging for me. Stephanie.

Jeanette W's May 14 reply to Joe L's May 11, 2001 - Hi Joe, I have the same problem. I get awfully tired when standing in one place too long; My feet and legs get so heavy that I have to sit before they go out from under me. It is just one effect from having CHF. I deal with it the best I can. When I need to sit, I do just that. People might not understand, but then they don't have what we do and they don't have to deal with everything caused by it either. In church, I sit most of the time and no one really cares. You do what you have to do to feel comfortable and if no one else likes it just tell them, tough cookies, they aren't you and don't feel the way you do. Family usually understands and just ignore the rest of the world. Now that I am off my soap box, take care and I hope you feel better soon, Jeanette.

Helen O, May 14, 2001 - Hi all, I just heard from Diane Peters. She is in the hospital. They found an obstruction in her pancreas. They are going to do surgery to clear it and they are going to put in a stent. Please keep her in your thoughts and prayers.

Jon, May 1, 2001 - Hi everyone, I could use some more responses to my May 1st post, which I repeat below. If you didn't send me a response, please consider doing so. Thanks. :-)
     Medscape offers an online service where doctors upload information about their patients (medical records info) to a "secure" server and they then use "Medicalogic" software to analyze that patient info and share it with other doctors. The patient info is stored online, so to speak. At least, that's how I understand it; I could be wrong. My questions are:

  1. Would you be okay with your doctor uploading your medical records info to such an online service?
  2. Do you think a doctor should do this without permission from the patient concerned?

I have asked some CHF doctors about this and none have replied. These are doctors who usually answer my questions. I am very interested in your thoughts. Jon.

Jon, May 1, 2001 - Hi everyone, Please note that posts may be late tomorrow because I have to hoof it down to the county courthouse and howl about property taxes and such. I approached this with the same thoroughness I approach this site with, and I don't think they are going to like me much by the time we wade through 40 photographs and a 3 page blow by blow description of same. <g>
     Sara (May 9th post), you might want to take a look at The Doctor's Page, where Dr. Marc Silver has something to say about taking CHF patients off their meds in his latest answer. Jon.

Robin Lynn's May 14 reply to Christy's May 14, 2001 - Hey Christy, Thank you for responding to my post. I guess I didn't provide enough info. I am in the care of an EP doctor in Slidell, Louisiana. My cardiologist is not a CHF doctor but I am still looking.
     I had an ablation back in November of 2000 and we thought we got it. Two weeks after that ablation I had 2 sustained episodes of v-tach, which resolved on their own. I have had only one other run that sustained but many brief runs. I can have anywhere from 4 per week to 6 per day. It is wearing me out! My EP doesn't seemed as concerned as I am. He wants to go back into the cath lab and try again. I just don't know. I think it would be easier to just get an ICD and know for sure that I won't fib out. Do I sound paranoid? Do you think it is stupid for me to ask for an ICD? The ablation cost $14,000 and he wants to do it again. I know it could take a lot of ablations to get to it. Thanks for your help. God bless, Robin Lynn.

Pat Y, May 14, 2001 - Hi, for newly diagnosed readers, I was diagnosed December 25, 1994. I am still independent (live alone) although I no longer drive out of town. I have limits on daily activities such as laundry, housekeeping, etc,... I continually decide if an activity is worth a day or two on the couch. I do everything that I am supposed to do except keep an eagle eye on sodium. Eating out with friends is the only socialization that I have right now. I am not ready to give this up yet although I am probably shortening my life. That is my choice. I continue to do much of what I can and want. That is more important to me than seeing how long I can live. Hopefully I will never regret my decisions.

Michael, May 15, 2001 - Hi, In case anyone tries to e-mail me, I have a new e-mail address. Something happened and I could no longer access my old account so I just started a new one.

Sharon P's May 15 reply to Stephanie's May 14, 2001 - Hi Stephanie, Memory loss? You ask that like any of us even has any left. <g> Yes, memory loss is pretty prevalant in my life. Part of my problem is an underactive thyroid for which I now take medication. Mostly my husband and I laugh off my bad memory but there are times when it really bothers me. I do use it to my advantage though, by blaming everything I do wrong on a bad memory. What bothers me more is the lack of concentration. Our pastor preaches a simple 15 minute message and I couldn't begin to recall what he just said as my mind simply goes wherever it wants. Try not to let it get you down. Blessings, Sharon P.

Ben B's May 15 reply to Robin Lynn's May 14, 2001 - Hi, I don't know if you are paranoid or not, but I think your EP specialist probably knows more about this than anybody here. I think when it comes to arrhythmia, EP docs know more than anyone. I'm sure you could keep searching until you find an EP doctor you could persuade into putting in an ICD but at some point we all have to get comfortable with our treatment. How do you know you are having these runs? Are you on a permanent holter? I am not saying this to be mean because I know what it is like to be worried about our health. I've been there but we can sure think ourselves sicker than we are, and at some point we have to trust our doctors. If we can't get comfortable mentally, nothing will help, not an ICD, nothing. I'm sure I'll probably catch heck for this post from somebody, but I had to say it.

Jon's May 15 reply to Ben B's May 15, 2001 - Hi Ben and Robin, I'm too tired to get into this very far but I hear two things coming from Robin. One is financial and she makes a good point that most of us might miss, including me. At 14,000 dollars US a whack, two ablations almost equal the cost of an ICD implant, which - along with meds - may eliminate need for any more ablations. For a plain vanilla ICD implant, 30,000 US is the cost I was quoted 18 months ago.
     As to trusting doctors, I disagree. How many of us were misdiagnosed by a doctor we trusted at the time? It isn't their life, quality-wise especially. How could they care about our lives as much as we do? That's just a fact. Therefore we must always watch out for ourselves, no matter how comfortable we are with our dox. I should point out that I am very comfortable with my CHF doc and I trust him - but I watch every decision he makes about my treatment like a hawk. It's just smart.
     Robin makes the point that any given run could develop into SCD, and it is a fact that an ICD is the only sure-fire way to stop a lethal run in time to save her life. Between the financial angle and the possible SCD risk, I might personally opt for an ICD at this point, especially since another EPS carries small but very real risk. It is an invasive cath procedure and a small number of people die in the cath lab every day in the USA. Robin says the runs are wearing her out physically and that the longer runs feel like a heart attack, so it's quite obvious that these are significant arrhythmias that need no monitor to discover!
     Robin, I noticed that the therapies under discussion are surgical intervention in the form of ablation and ICD, also invasive. I wonder what drug therapy options have been explored and which may remain open for you. It's always a matter of each individual's situation. I'd go for a second opinion first and then decide. But you're not paranoid or obsessed or anything like that.
     With all that said, I have seen people who do get obssessed to the point of unhealthiness with their own physical problems. It's very hard to tell when that point has been crossed from long-distance, that's for sure, so Ben's mention of it is definitely not out of line; Not at all. Jon.

Sharon P, May 15, 2001 - Hi, Three and a half years ago, when diagnosed with DCM and having a defibrillator implanted, I thought that at the age of 49 my life was over. How wrong I was. I've followed my doctors' instructions, never skipped meds (except when I forget, that is), do my exercising, watch my sodium intake, and stay informed.
     My efforts have been rewarded. I am stable and lead an acceptable life. In fact, my husband and I just returned from a dream vacation: a 2-week Caribbean/Panama Canal cruise. Before leaving I saw all 3 of my doctors to make sure all was well, I took duplicate sets of medication, napped daily and watched my sodium intake. I took every precaution I could think of and it was a grand trip. The humidity was difficult but I could always get out of it and into the air conditioned ship. I say this for all the new folks who feel as I did in the beginning that my days were numbered and I would spend those remaining days on the couch. No no, there is hope. Blessings, Sharon P.

Ben B, May 15, 2001 - Hi Robin, I forgot one thing. Whether an ICD is significantly better than drugs may depend on whether your EF is higher or lower than 35%. I take this straight from a study on this site which says, "Patients with an EF higher than 35% did no better with an ICD than with drug treatment, but those with an EF below 35% had significantly better survival with an ICD than with drug therapy." If your EF is higher than 35%, maybe your doctor is taking this into account.

Julie G's May 15 reply to Stephanie's May 14, 2001 - Hi Stephanie, You have a nice name. My granddaughter's name is Stephanie. To answer your question, I suffered from memory loss for awhile too, caused by lack of oxygen to my brain. It helped me to play word games and number games to stimulate my brain to think. Maybe this will help you too. I hope it does. God bless you and keep you in the palm of His hand, Julie.

LaRae T's May 15 reply to Jon's May 14, 2001 - Thank you Jon, for a very informative response to my inquiry. It was much more detailed than the one given to me by my doctor. I found the information I wrote about not through Medspeak but under Medical Dictionaries and drew my conclusions. I looked up bundle branch block and followed up with the word ischemia. My doctor is not sure what is causing my CHF but since I have had heart surgery twice due to a congenital defect, I suppose any one of a number of things could be causing it. Again, many thanks for your prompt response.
Jon's note: I aim to please - I just usually have rotten aim. <g>

Maxine S, May 15, 2001 - Hi, I am wondering if anyyone has had the Contak CD device implanted. I just found out that I have a good chance of having this done in Milwaukee, one of the cities that is testing it. It is expected to be approved by the FDA within the year. It shocks both sides of the heart so the chambers work together to pump blood efficiently. It also provides defibrillation to protect against sudden cardiac death. I had an EF of 16% in December of 2000. I will have my second echocardiogram next week. Please post if you have had experience with this. Thanks for all of the help on this site.

William McChargue, May 15, 2001 - Hi, I need a salt substitute that has no potassium in it. If anyone has one, please let me know. Thanks a lot and may God bless you.

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