The paperwork never ends The Archives
October 16-31, 2003 Archive Index CHFpatients.com

Joanne E's 10-16 reply to Wadine's 10-15     my diabetes experience
 
Marly's 10-16 reply to Dave T's 10-7     it does get confusing
 
Donna V 10-16     need some advice
 
Cat's 10-16 reply to Gregg's 10-15     working and SSD
 
Ray C 10-16     MUGA and arthritis questions
 
Louise D's 10-16 reply to Dan's 10-15     Avandia and heart failure
 
Ruthie A's 10-16 reply to Dan's 10-15     a suggestion
 
Emily A 10-16     my mom died and more
 
Jack D's 10-17 reply to Wadine's 10-15     diabetes experience
 
Katherine H's 10-17 reply to Marly's 10-16     CRT pacemaker experience
 
Blanche A's 10-17 reply to Emily A's 10-16     condolences
 
Wadine 10-17     seek pacemaker experiences
 
Lise 10-17     I think I drank too much fluid
 
Wayne 10-17     can we take glucosamine chondroiton?
 
Pat H's 10-17 reply to Emily A's 10-16     condolences
 
Lydia's 10-17 reply to Wadine's 10-15     imipramine and CHF
 
Lydia 10-17     am I missing something?
 
Lane C's 10-18 reply to Emily A's 10-16     condolences
 
Paul D 10-18     seek info on hawthorne and CHF
 
Jon's 10-18 reply to Paul D's 10-18     hawthorne and CHF
 
Monica A 10-18     seek info on EF and exercise
 
Joe S' 10-18 reply to Jack D's 10-17     seek opinions on this
 
Pam 10-18     what is going on with my PH?
 
Jon's 10-18 reply to Pam's 10-18     for what it's worth
 
Tom S 10-18     going off Coumadin
 
Robert 10-18     can I give myself IV drugs?
 
Susan G's 10-18 reply to Dave T's 10-7     pacemaker experience
 
Danielle 10-20     arrhythmia questions
 
Tracey C 10-20     bowel movements & episodes - any ideas?
 
Mel G's 10-20 reply to Tom S' 10-18     aspirin vs warfarin to prevent strokes
 
Norma's 10-20 reply to Paul D's 10-18     hawthorne experience
 
Karen K's 10-20 reply to Wadine's 10-15     Imipramine experience
 
Tom S' 10-22 reply to Mel G's 10-20     thanks and more
 
Joanne E 10-22     when do we need oxygen?
 
Jon's 10-22 reply to Joanne E's 10-22     when do we need oxygen?
 
Joe S' 10-22 reply to Tom S' 10-20     doctors
 
Dan 10-22     get that second opinion! & more
 
Pam 10-22     update
 
Elaine H 10-22     seek CHF doc in Arizona
 
Greta's 10-22 reply to Danielle's 10-20     irregular heart beats, see a doc!
 
Dan 10-22     seek Lexapro experiences
 
Pam's 10-23 reply to Jon's 10-22     asymptomatic heart failure here
 
Timothy C 10-23     should I be considering transplant?
 
Michael M 10-23     do I have to just take it easy now?
 
Pat Y 10-23     the site is appreciated
 
Jean C 10-23     where do I get ID saying I have ICD?
 
Kate's 10-23 reply to Joe S' 10-22     doctors are sometimes wrong
 
Pam 10-25     doctors are sometimes wrong
 
Joe S' 10-25 reply to Kate's 10-23     doctors
 
Tom S' 10-25 reply to Timothy C's 10-23     transplant decisions and more
 
Lorraine 10-25     update and thanks
 
Monica A 10-25     thanks for site
 
Dave D's 10-25 reply to Jean C's 10-23     ask your doctor for ICD ID
 
Valerie R's 10-25 reply to Tim's 10-23     transplant decisions
 
Valerie R's 10-25 reply to Jean C's 10-23     talk to device manufacturer
 
Lane C's 10-25 reply to Jean C's 10-23     IDs that can be worn
 
Lane C's 10-25 reply to Michael M's 10-23     get info from doc
 
Lane C 10-25     seek Herbalife experiences
 
Larry's 10-25 reply to Jean C's 10-23     IDs available online
 
Kate's 10-26 reply to Timothy C's 10-23     transplant evaluation experience
 
Pam's 10-26 reply to Jon's 10-25     hydralazine, hepatitis
 
Jack D's 10-28 reply to Pam's 10-26     hepatitis
 
Jim I's 10-28 reply to Timothy C's 10-23     heart transplant experience
 
Tom S' 10-28 reply to Timothy C's 10-23     heart transplant decisions
 
Jon's 10-28 reply to Tom S' 10-28     heart transplant decisions
 
Sue 10-28     seek low sodium resources
 
Ben B's 10-29 reply to Timothy C's 10-23     heart transplant decisions
 
Darric 10-29     thanks to all here
 
Larry's 10-29 reply to Sue's 10-28     low sodium recipe resource
 
Tom S' 10-29 reply to Jon's 10-28     tough decisions, prayer request
 
Don C's 10-29 reply to Timothy C's 10-23     heart transplant decisions
 
Roger G's 10-29 reply to Sue's 10-28     low sodium ideas
 
Roger G's 10-29 reply to Pat Y's 10-23     me too!
 
Greta's 10-29 reply to Sue's 10-28     low sodium cookbook and more
 
Kate's 10-29 reply to Tom S' 10-28     considering everything
 
Donna V 10-30     update, thanks, and more
 
Tony 10-31     my view on taking control
 
Dan S 10-31     seek ideas on skin problems
 
Bernard Z 10-31     why all the salty IVs?
 


Joanne E's October 16 reply to Wadine's October 15, 2003 - Hi Wadine, I was diagnosed with type 2 diabetes 13 years ago and was immediately put on insulin. At the time, my CHF had not been diagnosed. I'm sorry I can't help you with your meds but my understanding as to why I was put on insulin was because I was not overweight. No doctor has ever mentioned that my insulin and CHF meds would interfere with one another. If you are concerned, you should probably get a second opinion. God bless. JavaJo90@aol.com


Marly's October 16 reply to Dave T's October 7, 2003 - Hi, I have had IDCM for the past 8 years. I also have an ICD/pacemaker since July of last year, although the electrophysiologist wanted to implant a biventricular one. I'm exploring upgrading this to a biventricular model because my heart function has not improved much with the current one; I am class 3 to class 4. An electrophysiologist suggested that a biventricular pacemaker can improve me by one functional class better. However, another electrophysiologist thinks it will not do me any good since my EKG's QRS interval is less than 130 milliseconds. Confusing, isn't it? mcardenas@pacific.net.ph


Donna V, October 16, 2003 - Hi, I need some input. I see my cardiologist at the end of the month and he's to do an echo then. I know I'm better than I was 6 months ago (EF of 15% and 30 lbs of fluid and about dead ).
     I now weigh 45 lbs less than I did this time last year and have regained 10 lbs (unsalted cashews?). I now feel almost normal once I get moving and get things pumping in the mornings. I view sodium as poison, restrict my fluid, and go to rehab 3 times a week and to the local Y on the off days sometimes or walk a mile or so on non-humid days. I'm slowly regaining some muscle tone although something is always sore.
     I'm on Lazix, potassium, Lanoxin, Altace, Aldactone, Coumadin, magnesium ox, Coreg, and Zoloft. All seems to be working well and I don't want the boat rocked. I think my doc might want to increase my Coreg to 50mg per day but how low can my blood pressure and heart rate go? I'm charting them at odd times each day until I see my doctor in hopes he'll look at it. I'll also take my charts from rehab to him where my heart rate zooms up on the eliptical. My resting heart rate is between 50 and 60, where he wants it and sometimes my blood pressure is 88/44.
     Now that I'm comprehending what I'm living with, can anyone suggest questions I should ask that will get a response, especially about the Coreg? I've had no problems with the meds other than really dragging in the mornings. dmvditty@aol.com
 
Jon's note: Coreg dose should not be raised if heart rate is 55 beats per minute or less - that's from the manufacturer.


Cat's October 16 reply to Gregg's October 15, 2003 - Hi Greg, I made an unsuccessful attempt to return to work, and my benefits were unlawfully disrupted. Fortunately, an SSA administrative law judge reviewed my case, and my benefits were promptly reinstated, retroactively. The following is an excerpt from their newsletter. You can also get more info at www.ssa.gov/work/ResourcesToolKit/workincentives.html. Good luck, Cat.
     "Trial Work Period ... SSDI - The trial work period allows you to test your ability to work for at least 9 months. During your trial work period, you will receive your full disability benefit regardless of how much you earn as long as you continue to be disabled. The 9 months does not need to be consecutive and your trial work period will last until you accumulate 9 months within a rolling 60-month period. Certain other rules apply." lafsalot2000@yahoo.com


Ray C, October 16, 2003 - Hi, Right after a MUGA test I developed pains in my neck and shoulders. A doctor finally diagnosed it as arthritis. He said it could have been caused by a shock to the system. Could the MUGA test cause it? Has anyone else had the same problem? rcarmack2@earthlink.net


Louise D's October 16 reply to Dan's October 15, 2003 - Hi Dan, Boy, you are taking a lot of meds. I am not sure if you read recent reports that Avandia may cause heart failure in some patients. Maybe you should check out those reports. louport35@yahoo.com
 
Jon's note: Avandia - especially in combination with insulin - causes fluid retention. That fluid retention - edema - can worsen or possible cause a heart failure episode. That is per the FDA, April of 2002.


Ruthie A's October 16 reply to Dan's October 15, 2003 - Welcome Dan! I have type 2 diabetes too, and take both Lantus and Humalog. You have a lot of physical problems and will consult with a CHF specialist to advise you about your heart failure. So how come you are still seeing a PCP for your diabetes? May I suggest you find a reputable endocrinologist who is willing to work with you and your CHF doc to bring your diabetes under control with safe medications? I think you will find that you will feel better all the way around. Ruthie A. rlaba51@yahoo.com


Emily A, October 16, 2003 - Hi, I haven't posted in awhile. It has been a rough summer. I am 32 and was diagnosed with CHF in June, and I have really been struggling. I write to share that my mother died last night from CHF. I was by her side and it was really hard to say goodbye. She is my inspiration, my light, my everything. I am lost without her, but I'm glad she feels no more pain. May she rest in peace. emilyadams@sbcglobal.net


Jack D's October 17 reply to Wadine's October 15, 2003 - Hello Wadine, I was diagnosed with type 2 diabetes a year ago and they put me on Glucophage, but I was allergic to it and got a nice rash. So I started controlling it with diet. After about 2 months on the diet, my blood sugar has continued to be controlled and my A1C tests consistently at levels normal for people without diabetes.
     Of course if I cheat on the diet (like the day I ate 12 dolmades), my blood sugar skyrockets, but there is way too much food available now that doesn't raise blood sugar (like sugar-free Russell Stover chocolates) so that I don't stray anymore. Jack. maddjak@hotmail.com


Katherine H's October 17 reply to Marly's October 16, 2003 - Hi Marly, Do you have a bundle branch block? My QRS was just above 130 but I also have a left bundle branch block and was class 3. It has made an immense difference for me, although I know it doesn't always work for everyone. kholian@msn.com


Blanche A's October 17 reply to Emily A's October 16, 2003 - Hi Emily, I am so sorry for the loss of your mom. bna104@msn.com


Wadine, October 17, 2003 - Hello, Last week my cardiologists and I talked about a pacer and I left his office feeling excited. Then I began to read posts here and can see where some people seem to be in and out of the hospital due to their devices. So far I have not been back to the hospital after my first bout with CHF and would like to keep it that way.
     I had asked my doctor about a pacer months ago and he was not very receptive to the idea. Last week, my EKG had improved, down to 130 from 160. Now, he is in favor of a pacer. I am going to make an appointment to see the pacer doc and feel that my chances are good at being a candidate for a pacer.
     For those of you with pacers, do you feel your quality of life has improved? Has your life expectancy been improved by adding a pacer. Thanks for your responses, Wadine. amoment@aol.com
 
Jon's note: The CHF (CRT or biventricular) pacers have not been directly proven to extend life span due to their third wire, but in general, for those who need constant pacing a pacemaker can extend life. Quality of life comments I leave to you pacer wearers!  ;-)


Lise, October 17, 2003 - Hi, I just wanted to say good morning to all. Last night was a rough night for me. I must have had too much fluid yesterday. I couldn't lie flat last night and kept coughing to clear my lungs. This morning I am okay. We CHFers have to really watch how much fluid we take in. Lise, age 38. LMonaLise@aol.com


Wayne, October 17, 2003 - Hi Jon, Does anyone have any knowledge about possible negative impacts of someone with IDCM taking glucosamine and chondroitin - other than the additional sodium? I don't want to have to cut back on my exercise routine, but I'm having some problems with joint pain and my physician said this stuff really could help. Thanks. whreos@earthlink.net
 
Jon's note: I know of no problems from it.


Pat H's October 17 reply to Emily A's October 16, 2003 - Hi, I am so sorry to hear about your mother. May she rest in heaven with the angels. I will pray for you; this stress can only aggravate your CHF. Please feel free to contact this site. It will help you deal with your grief. There is much love, support and knowledge on this site. Pat. pat_hammond@mindspring.com


Lydia's October 17 reply to Wadine's October 15, 2003 - Hi Wadine, I saw your post today and was extremely concerned about a drug you are taking,called "imipramine." I was taking Imipramine when I was diagnosed with IDCM, my CHF specialist told me immediately to get off the drug because it was very bad for the heart, and research has proven that. I would highly suggest you inquire with your doctor, and do some research. If your doctor disagrees, I would get a second opinion from another CHF specialist. God bless, Lydia. Flanders66288@aol.com


Lydia, October 17, 2003 - Hello everyone, I have been concerned this week because I have been running out of energy quicker, and have more shortness of breath. My weight has been remaining the same. My stomach always seems to be bloated; that is where I retain my fluids. The only medication that has been added is digoxin (Lanoxin).
     There were 2 days this week that I was on my feet walking in a mall for about 2 hours and siteseeing in Monterey for about 3 hours. I was exhausted. I was wondering if anyone could give me some input. Maybe there is something I am missing. Is this just the typical symptom thing? I guess I have been feeling real good for awhile and feeling like this is disappointing. I was wondering if anyone has some input. Maybe there is something I am missing. God bless, Lydia. Flanders66288@cs.com


Lane C's October 18 reply to Emily A's October 16, 2003 - Hi, I am so sorry about your mother. I will have you in my prayers that you have the strength to get through this very difficult time. If you need a good listener, feel free to e-mail me. I was diagnosed with CHF this past summer. It is difficult enough to adjust your life to that, let alone losing someone so very dear. Hang in there. In time, things will get better. fastlanedelivery@flash.net


Paul D, October 18, 2003 - Hi, Does anyone here have any experience with taking hawthorn? A local herbalist suggested it, but I'm worried about possibly interfering with my standard meds, which seem to be working well and are finally in a stable dosage. Among herbal medicine types, it seems to be commonly suggested for CHF, but I don't see much about it here. Thanks for any information. therealpauld@netscape.net


Jon's October 18 reply to Paul D's October 18, 2003 - Hi Paul, Hawthorn is not recommended if you take digoxin (hawthorn raises dig level) or Coumadin (hawthorn acts in a similar way to aspirin). Hawthorn is also a vasodilator so it can lower blood pressure. For that reason, when you start it you should monitor your heart rate and blood pressure for 6 weeks or so. Hawthorn is only recommended that I know of for CHFers in classes one and two.
     Unfortunately, most trials that showed positive results used standardized extracts that are not generally available in the USA. Here you take your chances because there is no non-manufacturer regulatory oversight in place. Don't expect quick improvement; if it occurs, it usually takes one to two months. Jon.


Monica A, October 18, 2003 - Hi, I am 31 and was diagnosed with IDCM one month ago. I am very new to all of this and have certainly found this web site to be very helpful. Jon, you have done a great job, and I have visited this site every day since I found out about my diagnosis. I love your web site!
     A general question: After I had my stress echo, I was told that my heart basically stayed the same size (with an enlarged left ventricle) and my ejection fraction decreased after exercise. Is this consistent with dilated cardiomyopathy? I haven't been able to find anything about this on the Internet (comparison of EF before and after exercise), or maybe I'm just looking in the wrong places! Like I said, I'm new to this and what may seem old hat to some is not to me. hegelianworld@aol.com


Joe S' October 18 reply to Jack D's October 17, 2003 - Hey Jack, I gotta tell you one experience I had with a regular doc. I told him I controlled my type 2 diabetes with diet and exercise. He said it couldn't be done, then he blurted out that I probably didn't have any relatives with diabetes. My wife said in her angry tone, "How about both parents, two uncles, one son and a brother?" Needless to say, we never went back.
     I have one question about diuretics. My main cardio doc switched me from 2.5mg Zaroxlyn to 12.5mg of HCT. I immediately gained 10 lbs, but feel tons better. What's everyone's opinion? Joe S. jes@gbis.com
 
Jon's note: Personally, I would go with feeling better, as long as the weight doesn't keep going up - maybe you were too dried out before. Still, 10 pounds is a lot.


Pam, October 18, 2003 - Hi, I hope someone can answer this question, or just provide a little more information. I just found out I have pulmonary hypertension along with congestive heart failure. My ejection fraction, (I have a copy of my echocardiogram finally!) is estimated at 20% or less. The echocardiogram estimates right ventricular pressure between 50 and 55 mmHg.
     Just yesterday I consulted a sleep specialist about possible apnea. My internist had told me that sleep apnea could cause pulmonary hypertension. The sleep specialist said the opposite, that my left ventricular dysfunction was causing pulmonary hypertension and that treating it could reverse the PH.
     Does anyone have the missing piece to this puzzle? The sleep specialist indicated that the PH was nothing to really worry about, a condition entirely secondary to heart failure. How would he know this, I wonder? Any comments? Does anyone else have PH? Would anyone like to help me understand this? spirlhelix@yahoo.com


Jon's October 18 reply to Pam's October 18, 2003 - Hi Pam, The first thing to do is make sure your different doctors are actually talking to each other about your situation. Get them on the same page. I assume you have had a 2-night sleep test and are officially diagnosed with sleep apnea. That being the case, I also assume you are already being treated for it, probably with a bi-pap or cpap machine.
     The normal range for RVDP or right ventricular diastolic pressure is 8 mmHg or less. The normal range for RVSP or right ventricular systolic pressure is 15 to 28 mmHg. I would suggest getting to a heart failure specialist in a hurry and not allowing your internist to treat your PH if there is any way to see a specialist. Be sure to read www.chfpatients.com/ph.htm as well. Jon.


Tom S, October 18, 2003 - Hi, Sometimes something has to give and lately I have given the heave-ho to Coumadin. I know that will raise Jon's BP by a few points but economic necessity and a less than responsive cardiology clinic has led me down that path. I originally started on Coumadin nearly 6 years ago. It has been an up and down battle from the outset; that along with the aggravation and inconvenience of monthly up to weekly bloodlettings have made it an unpleasant drug to deal with.
     Over two years ago I got a reprieve for a year after an echocardiogram, but then was slapped right back on the drug a year later following another echo which indicated I had a "prolapsed" heart and a "possible" and I stress possible, blood clot in the prolapsed area. I have now been on Coumadin (7 to 10mg per day) again for over a year and really want desperately to get off of it for other reasons which my cardiologists won't even listen to or admit to any indication that I may be correct.
     When I started Coumadin I weighed in at around 185 lbs - a weight I had pretty consistently held all my life right up until CHF symptoms hit at age 48. I am now 57 years old and weigh 338 lbs. That was not my top weight. A little over a month ago I topped out at 350. Most of my weight gain has been a steady climb upward until I stopped taking Coumadin. During the year I was off Coumadin, my weight dropped down into the 320s and it was steadily decreasing. I might add that I eat a very meager amount of food and do very little snacking.
     I stopped taking Coumadin - because of financial problems - a little over a month ago and already I have dropped 12 pounds and it is a steady decrease of almost 1/2 pound per day. I also noticed that some unpleasant and annoying little hard skin growths on my upper torso that made my skin feel like sandpaper have started to disappear. Am I crazy or is there some correlation between Coumadin and these two phenomena?
     My cardiologists poo-poo it, and by the way no longer supply samples of any drugs including Coumadin, which they used to keep a supply on hand for me. The VA would give me a reduced cost supply of Coumadin but that means driving over 120 miles to the nearest VA hospital to get a monthly or even bimonthly blood test - something I am not willing to do.
     At this point I am going to ask the clinic I go to, to do another echo and see if I really need Coumadin or can go on a daily dose of aspirin or some other drug. I am sick of the excess weight, the blood tests, the rough skin and aggravation that seems to accompany the drug. bigheart@muchomail.com
 
Jon's note: I don't know - you've sure had your share of difficult circumstances. Do the best you can. Maybe you can take a larger than usual dose of vitamin E or aspirin or something to help hold down stroke risk.


Robert, October 18, 2003 - Hi, I have a question: Is it possible to administer to yourself IV diuretics? The pill forms all make me very ill, including Edecrin. Thank you. hawkdog86@aol.com


Susan G's October 18 reply to Dave T's October 7, 2003 - Hi Dave, I had a biventricular pacemaker and ICD put in last June. I can tell you first hand that I feel much better. I am able to do things again! Before, I could barely walk across the house and now I can run errands, go out to eat, etc. I'm sure it has improved my cardiac output. I haven't had an echo since it was inserted, so I don't know what my EF is. My QRS before was around 164, now it's around 120. I hope this helps. Sue. suekgpc@hotmail.com


Danielle, October 20, 2003 - Hi, I have polymiositis, an autoimmune disease which has attacked my liver, muscles and recently my heart. I have been diagnosed with cardiomyopathy, pericarditis and an irregular heart beat. For the last 6 days, my heart has been racing nonstop day and night. My only medication is 40mg prednisone. Can someone survive with an irregular heart beat, and for how long? I cannot be on drugs due to my late-stage liver disease. shrimpscampi@comcast.net


Tracey C, October 20, 2003 - Hi everyone, I have a question. In the last year I've intermittently been experiencing vertigo, sweating and complete weakness as if I'm going to pass out, minutes prior to having a bowel movement. I hadn't connected the two until recently. The first couple of times this happened I went to the ER thinking it was my heart. Everything checked out fine.
     Now I just ride it out and it does pass once I've relieved myself. Has anyone heard of something similar, or experienced this? I've had familial DCM for about 3 years, with an EF averaging 45% with virtually no symptoms aside from my original bout of acute CHF. I've had Holter monitors done with only 2 PVCs recorded. Any input would be great. I just want to know which type of doctor I should head to - the gastro-intestinal or my CHF doc. Thanks, Tracey. 2tcollins@cox.net


Mel G's October 20 reply to Tom S' October 18, 2003 - Hi Tom, I am currently dealing with recurrent stroke and my desire not to be on warfarin therapy. That topic is being addressed in two trials. One has been completed and the other is ongoing. They compare aspirin at 325mg per day - not 80 mg - to warfarin. The ongoing trial is specifically for heart patients with low ejection fraction. The conclusion so far is that aspirin is as effective in reducing recurrent stroke, unless there is atrial fibrillation or flutter. If you have atrial fibrillation, it's not quite as clear. Links to the trials are: www.ninds.nih.gov/news_and_events/pressrelease_stroke_prevention_111401.htm and www.clinicaltrials.gov/ct/show/NCT00041938?order=2. Maybe that info will help you out. I hope so. Good luck. falmouth@bigpond.com


Norma's October 20 reply to Paul D's October 18, 2003 - Dear Paul, I have been taking Hawthorn for 5 years now, alone, with digitalis, Cozaar, Aldactone and a diuretic. All my digitalis tests have been normal. I feel that the hawthorne together with CoQ10 has contributed to keeping my heart flexible, so that I am able to lead a fairly normal life most of the time.
     I take 100mg of CoQ10 in the morning when I take my digitalis, 100mg of hawthorne at noon together with 30mg CoQ10, and l00mg of both CoQ10 and hawthorne in the evening. I buy hawthorne phytosome standardized extract distributed by PhytoPharmica, Div. of Integrative Therapeutics, Inc., Green Bay, WI., 54311. I have not found these in any health food store, but buy them from a doctor of alternative medicine in Stuart, Florida. One time they ran out and I called the company who referred me to The Medicine Man in Georgia, with the telephone number 1-888-256-4304.
     I agree with Jon that some of the alternative medicines you purchase are not standardized, but having used these to good effect for so long, I think I can recommend them. Good luck, Norma. normadroz@aol.com


Karen K's October 20 reply to Wadine's October 15, 2003 - Hello, I wanted to respond regarding Imipramine. I was diagnosed with cardiomyopathy and CHF in 1991. At the time I was on a very high dose of Imipramine. The doctor who diagnosed me immediately took me off the Imipramine and as he walked out of the room, he said, "No, the medication did not cause your condition."
     Since I've never been put back on Imipramine, I am highly suspect about the fact that I was so quickly taken off the medication. Personally, I think I would discuss this with my doctor. I now take Prozac and Doxepin; the Doxepin is to help me sleep, although it is also an anti-depressant. Karen K. karenk@machlink.com


Tom S' October 22 reply to Mel G's October 20, 2003 - Hi, Thanks for the reply and the information. I did find out today that the primary reason I am continuing on Coumadin is because of atrial fibrillation. The last time I was in the hospital I got graphic proof that I had it when I was hooked up to the monitor and the doctor pointed out the a-fib which I soon correlated with the funny little "electrical" flutters I feel on the left side of my sternum on a regular and recurring basis. Sometimes the flutters hurt a little bit, but most of the time they tickle me from my innards.
     By the way, I had mentioned those little flutters on a prior trip to my cardiologist and again it was poo-pooed as being digestive rather than related to my heart. Thanks again. bigheart@muchomail.com


Joanne E, October 22, 2003 - Hi everyone, What factors determine whether or not a CHF patient goes on oxygen? Thanks. javajo90@aol.com


Jon's October 22 reply to Joanne E's October 22, 2003 - Hi Joanne, What people usually call "O2 sat" or oxygen saturation level, determines need for supplemental oxygen in chronic heart failure. This is accurately measured by a quick but unpleasant arterial blood gases test while you are breathing room air. Then your oxygen saturation should be measured during sleep, although this is not always done. If your oxygen levels are poor, you need oxygen. Many doctors consider 90% to 88% or lower to need oxygen supplementation.
     If your oxygen level is not low, supplemental oxygen won't help your shortness of breath. The problem is that no matter how much oxygen you breathe in, if it is not properly distributed by the body, it won't help. That's why you usually have your drug therapy boosted to proper levels before getting supplemental oxygen. PCPs often give it to people it won't help, but CHF specialists are more accurate in patient selection.
     Sometimes the measurement used is partial pressure of arterial oxygen, called PaO2. That is measured by pressure in mmHg like blood pressure is, instead of in percentage. Jon.


Joe S' October 22 reply to Tom S' October 20, 2003 - Hi Tom and Jon, I know I have a different situation then many but my experience with most cardio docs is that they insist you take Coumadin no matter what. I refused after my aorta valve was replaced because my mother and her father both bled to death internally. An egotistical cardiologist told me that it didn't matter and that I still had to take it and almost refused to let me out of the hospital. It seems to me that many docs treat us generically like we all need the same meds, when we don't. jes@gbis.com
 
Jon's note: When I switched to my current CHF doc, the first thing he did was take me off some meds - including Coumadin - saying that no one should take drugs they don't need. Needless to say, I like my cardiologist.  ;-)


Dan, October 22, 2003 - Hi Jon and everyone, I just returned from my first visit with a CHF specialist who is listed on the CHFpatients.com web site. This was a fantastic visit. After 6-1/2 hours and seeing pharamacy, exercise, mental, diet people, and the CHF specialist I can only give thanks to God for bringing this web site to my attention.
     My meds were reduced, I learned that a pacemaker would do nothing for me and that the reduced sodium diet everyone on this site has spoken about would be greatly beneficial to me. Thanks Jon, for encouraging the second opinion!
     Folks, believe Jon when he says see a CHF specialist! My former cardiologist, as of today, had me thinking only a pacemaker or transplant would be beneficial for me. Both of these were incorrect. As the doc said, "... making you a victim instead of a survior!" dlshick@yahoo.com
 
Jon's note: Some mornings I wonder why I sit down in front of this computer to do all this. Thanks for reminding me why.


Pam, October 22, 2003 - Hi, I saw a cardiologist for the first time. He says I have class one severe congestive heart failure. He is hypothesizing it was caused by hypertension. Unfortunately, I didn't tolerate the first line of treatment of ACE inhibitors and beta-blockers so he is referring me to a specialist who deals with difficult to treat cases. He mentioned the possibility of heart transplant in passing, but I think he was trying to scare me into attempting a trial of Coreg, which I refused. He also told me I have a 50% chance of dropping dead suddenly in the next year. That's his statistic for those without treatment. I'm scheduled for a cardiac catheterization on Friday.
     He also prescribed Imdur and hydralazine, upped my Aldactone and nixed the Lasix. I hate to be a complainer but I will bite my tongue and say that the pain is unbearable. Or rather, "Huh hain hif hubeawabul." That's me trying to speak while biting my tongue. <g>
     I have called the pharmacist and even went in to see the internist on duty today about the pains in my arms and legs. They speculated that there was a slight chance the hydrazaline is causing the pain. Later, I began running a fever with chills, which is another indication of a hypersensitive reaction to hydralazine. I spoke to the doctor and he was inclined to think I have the flu and that this reaction to the med would be unlikely. I was reading the package insert on the Internet when I spoke to him and was able to quote the adverse reactions to him. He agreed I could discontinue it (I've had 3 doses since last night, as directed) and see what happened.
     Jon, thank you for the information on PH. I will look into it further. I have an appointment to see a specialist who deals with PH later this month. Well wishes to all, Pam. spirlhelix@yahoo.com
 
Jon's note: I dont' think you meant class one, which is CHF without symptoms.


Elaine H, October 22, 2003 - Hi, Does anyone have suggestions for a heart failure specialist in the Surprise, Arizona, area? Someone in my family has dilated cardiomyopathy with atrial fibrillation. I'm also interested in support groups and online resources. I'd like to suggest Success With Heart Failure by Marc Silver, MD, as a resource. ehanneman@hotmail.com


Greta's October 22 reply to Danielle's October 20, 2003 - Hi Danielle, An irregular heart beat is not unusual. Almost everyone has some type of one at some time or another. Most are not serious, although some are. However, since you have had that racing heart for 6 days, I suggest that get to your CHF doctor or whoever has been treating you, as soon as possible.
     Also, you don't say how long you have been taking Prednisone, but that stuff can do weird things to your body. There could be a connection or not. You need to find out, soon! Blessings, Greta. gjohnson@arkansas.net


Dan, October 22, 2003 - Hi, Does anyone have any experience with Lexapro? Good or bad experiences? dlshick@yahoo.com


Pam's October 23 reply to Jon's October 22, 2003 - Hi Jon, Yes, the cardiologist took a pretty thorough history and told me I have next to no symptoms. My lungs are dry and clear with no visible edema, I take deep breaths from time to time but do not get out of breath that much, etc. I have a slight cough and I tire easily, but fatigue can be explained by so many things.
     The problem is that my heart failure is severe while my symptoms are almost nonexistent, therefore I am at high risk of doing more than my heart can tolerate and dropping over dead. They usually don't identify many cases like me because of the lack of symptoms. We just turn up dead one day. We don't generally go to our doctors insisting on knowing what is wrong with us - especially once we are dead! Apologies for the gallows humor. ;-)
     The doctor says he will correspond with SSA (SSD) about my inability to work. I asked him what activity level he reccommended in my current condition, and he snapped, "None!" No strenuous activity. He is hoping to find some blockages when he does the catheterization on Friday. Wish me luck! Hugs, Pam. spirlhelix@yahoo.com


Timothy C, October 23, 2003 - Hi, This is Tim. I have cardiomyopathy which was found about 4 years ago. I had all the symptoms: Fluid buildup, I couldn't walk 5 steps, I would wake up gasping for air - what a nightmare! Finally I switched doctors and had an echocardiogram, then the doctors (I've seen a lot) put me on a fluid pill and some heart meds. I lost 57 lbs of fluid in 2 weeks. What a difference!
     It's been about 4 years. I had gastric bypass surgery and have lost 90 lbs in 5 months. I feel awesome but my doctor still asks how I feel about a heart transplant, which I'm scared to death about. If I was in a hospital and my life depended on it, then yes I would be all for it but since the weight loss I feel better than I have in years so I was wondering why should I worry about a transplant now. Shouldn't I live for the moment while I feel good? Thanks, Tim Caruso in Walton, NY. tcaruso2@stny.rr.com


Michael M, October 23, 2003 - Hi, I was just diagnosed with CHF. I recently had my aorta valve replaced. My EF is 20%. I have an enlarged heart and irregular heart beat. I spent 22 days in the hospital and had an ICD/pacemaker implanted. What would you recommend as far as my restrictions go? If I put stress on my heawrt by exercising, is that bad? Do I just live a very sedentary life from this point on? Thanks, Mike M. OOMartins@aol.com


Pat Y, October 23, 2003 - Hi, When you sit in front of your computer please remember that many of us get much of our education from this site. Some medical people are surprised at how much I know. Much of this knowledge comes from your web site. I have not found a lot of information I need any other place. So please remember how many of us you help when you sit at your computer. I'm sure many, many of us appreaciate the work you do. At times I feel like you saved my sanity when I needed information and was having difficulty getting it. So thanks from the bottom of my heart! PTYoumans@aol.com
 
Jon's note: Thanks - I'm just extra tired due to added responsibilites round home lately.


Jean C, October 23, 2003 - Hi, How do I go about ordering an ID that will identify me as having an ICD implant? Who are the suppliers? Thank you, Jean C. jcmiel@yahoo.com


Kate's October 23 reply to Joe S' October 22, 2003 - Hi, I also fought the Coumadin battle. I finally just said no. My doc wanted me to replace it with high dose aspirin and I again objected. I told him 325mg aspirin a day might cause me harm. He really got angry with me. I knew I was due to see his nurse practitioner in 2 weeks so I went home and started the 325mg aspirin a day to prove my point. When I saw the nurse she voiced grave concern over the hundreds of bruises that covered me head to toe. Under state law she had to ask if I had been beaten by my husband. I told her I can't tolerate high dose aspirin but the doc insisted. She went and spoke with him and came back and said to cut it down to 81mg daily before you end up in the hospital. Even with just 81mg daily I bruise like a peach. When I have an echo I actually bruise wherever they press down with the little wand gizmo. Doctors can be, and are sometimes wrong. tothymecottage@frontiernet.net


Pam, October 25, 2003 - Hi, I was supposed to have my cardiac cath yesterday morning, but instead I am calling to reschedule. I cancelled Thursday afternoon. I suspect the new medication for my heart - hydralazine - gave me a little bout of drug-induced hepatitis. That's why my arms and legs were aching so much the other day. In addition to aching muscles and joints in my arms and legs, I ended up with a fever, headache, dark urine, and a bit of yellow in the whites of my eyes. I've had hepatitis before and it makes me feel like I've been hit by a truck. My previous bout of hepatitis may be what made me susceptible to this one. I even discussed my liver history with the doctor before he prescribed this med.
     Hydralazine is one of about 18 medications that can cause hepatitis. From what I understand, if you go on taking a medication that is causing hepatitis, it can lead to fulminant hepatitis, which is fatal within days. So I'm glad I insisted on stopping it.
     Coincidentally, they took an abdominal CAT scan with contrast the day I was on the medication, so perhaps something will show up that. I just hope no doctor gets the bright idea of putting me on a med that causes hepatitis again. I'm really ready to find an electrophysiologist, I think. Sigh. Pam. spirlhelix@yahoo.com
 
Jon's note: Just a comment - did anyone consider your symptoms as a reaction to contrast dye? For others, hepatitis means inflammation of the liver. Fulminant hepatitis is very rare compared to the many other forms of hepatitis.


Joe S' October 25 reply to Kate's October 23, 2003 - Hi Kate, I seem to wind up with cardio docs who seem to think everyone has the same identical problem. Not only did everyone insist I take Coumadin, but also Zocor. My cholesterol has never been over 125, but when the preparation staff told me they were taking all the hair off both legs and it would never grow back, (and it hasn't) I really got mad. Why would they insist on doing this when they didn't need any arteries? Then the surgeon they eventually fired told me my left arm and legs were sore because they took the arteries from there. What arteries? I didn't have a bypass. One ray of light is that I have found one who does work with me. One more good thing is that I finally found a chiropractor who can help with this horrible scar. Joe S. jes@gbis.com
 
Jon's note: Many heart surgeries require the leg thing in case they find unexpected artery damage that needs repairing, although I have never heard of permanent hair loss.


Tom S' October 25 reply to Timothy C's October 23, 2003 - Hi, You must have some pretty good insurance if doctors are pushing you towards a transplant. Mine did just the opposite after they found out I didn't have insurance, even though they all said it was imperative that I needed a transplant as soon as possible or I wouldn't live to see the year out. That was 7 years ago.
     You have to make the decision, not them. It is ultimately up to you because there are a whole lot of factors involved, including being a slave to some pretty strong and expensive anti-rejection meds for the rest of your life. I opted to go the medical route as long as possible and perhaps that will be a fatal choice, but I have thoroughly enjoyed the time I have had and look forward to each additional second I am granted.
     By the way, I felt I should answer primarily because Walton, New York is not far from where a son and daughter of mine is living (Afton, NY) and was part of my territory when I worked as a bureau chief for the Oneonta Daily Star that circulates in your area. The Internet sure makes the world a whole lot smaller. bigheart@muchomail.com


Lorraine, October 25, 2003 - Hi Jon, I just want to thank you for this site. It helped me so much to understand what the doc was talking about while taking care of my husband. He lost his long battle on October 1st. He had CAD since 1987 and was diagnosed with CHF in 1994 but had lots of good years after that. He was under hospice care the last few months and they were wonderful. Keep up the good work and may God bless you and your family. Lorraine. gandlsimpson@msn.com


Monica A, October 25, 2003 - Hello Jon, I also wanted to echo Pat Y's comments about your web site. If I hadn't found your web site in the midst of this diagnosis, I don't think that I would have been able to speak confidently in "heart terms" with my PCP or my cardiologist or even find the courage to challenge my original PCP and tell him it was not anxiety or diabetes. :-)
     I am also in the process of finding another cardiologist in Tulsa because this one I have doesn't seem to like answering questions or even being spoken to. I've been encouraged by your information and your message boards to go ahead and just find another doctor. I hope that you get some good and well-deserved rest soon. hegelianworld@aol.com


Dave D's October 25 reply to Jean C's October 23, 2003 - Hi Jean, My ID came from Medtronic. I was just given it after the implant. Ask your doctor. debenham@core.com


Valerie R's October 25 reply to Tim's October 23, 2003 - Hi, I've had IDCM and CHF with 10% EF for a long time, going on 9 years. I've been teaching 8th grade English but last school year saw me in the hospital 3 times, twice by ambulance. At that time my cardiologist told me I needed to go for an evaluation. I cried and I went. They gave me a treadmill/echo metabolic stress test and I failed it with an 11. I almost cried again.
     Later, I got a copy of a letter to my doc saying I do not need to be listed for transplant at this time, because I am stable. They want to see me for another of those tests in 3 months to make sure I have not deteriorated. People have been telling me to get a transplant for 9 years, including my regular doc. I have found out that she, and most other doctors, know very little about it. I trust my cardiologist however, and I went when he told me I should.
     Even if you get listed, you only have a 12% chance of getting a heart. They are not going to put you on the list unless there is an immediate threat. Good luck. I've taken the year off to see what it is like to stay home and to cook low-sodium. I wasn't taking things as seriously as I should have because I felt so well. Fortunately, I feel well now. vgrogers@aol.com


Valerie R's October 25 reply to Jean's October 23, 2003 - Hi, I received my card from Medronics when I had my ICD and pacemaker implanted. Later I contacted them for a card to show when I travel about not being "wanded." vgrogers@aol.com


Lane C's October 25 reply to Jean's October 23, 2003 - Hi Jean, I saw your post asking about where to get an ID about the implant. I don't have an implant, however do have CHF and DCM. I got one on the Internet at www.escopes.com. They have a good range of tags as far as price.
     The neat thing is it is like a tiny telescope that the medics can look into and see everything critical to your health. You can go to their web site and see an image of what it looks like. I think it's great and I don't ever remove mine. It has organ donor notice, doctor and hospital info, insurance, pacemaker and more. I hope this helps you. fastlanedelivery@flash.net


Lane C's October 25 reply to Michael M's October 23, 2003 - Hi, My first question would be, "What did your doctor tell you?" Did he suggest cardiac rehab or the like? If not, you need to ask what you can do. I learned the hard way and ended up back in the hospital. Now it looks like a year till I can go back to work. You are more severe than me with the valve replacement, but it doesn't differ in recovering. Find out from your doctor and until then take it easy, but find out soon!
     If you don't get satisfactory instructions, maybe you need to look for another doctor. I learned the hard way about being proactive about my condition. First I had a cardiologist that didn't explain squat to me. I left that hospital and fired the doc. When it came to my heart, I learned that lesson quickly. fastlanedelivery@flash.net


Lane C, October 25, 2003 - Hi my friends, I really enjoy helping with suggestions or telling something I think would be valued by the group, and now I need some information myself. My wife has been approached by a good friend who has mentioned Herbalife and the "great benefits" they know of and have experienced. I will definitely consult my docs, but what have you found to be helpful? Is a regimine of over-the-counter vitamins just a good? Thanks for helping and good health to all. May God bless you! Special blessings on you, Jon. fastlanedelivery@flash.net


Larry's October 25 reply to Jean C's October 23, 2003 - Hi, You can get IDs from most pharmacies or order online. One good site is http://www.bizrate.com, where they have everything from copper to gold in any price range. Good luck, Larry. carolthornton@comcast.net


Kate's October 26 reply to Timothy C's October 23, 2003 - Hey fellas, I think I may have the record on saying no to transplants. I went to a cancer treatment center in November of 1981 to look at their bone marrow transplant center. The doc told me I might make it through Christmas but if I waited past the New Year I would be out of remission and it would be too late for transplant. I raise a glass to him every year. Let's see, that was 22 years ago now.
     In 1995 I went to the Cleveland Clinic to be evaluated for a heart transplant. I so disliked the place that I could not wait to get out of there. They told me 3 to 5 years before the grim reaper came my way. Let's see, that was 8 years ago. In 2002 I became a patient at my local heart transplant unit, but by 2003 had decided it just is not for me. No one we meet on this green earth can tell us when our number is up. Kate. tothymecottage@frontiernet.net


Pam's October 26 reply to Jon's October 25, 2003 - Hi Jon, Yeah, I agree fulminant hepatitis is very rare. I did some more reading and it seems unlikely that hydralazine would cause this extreme form of hepatitis, rather it could possibly cause drug-induced hepatitis. The treatment is to stop taking the medication, so that's a done deal. My internist took a hepatic profile on Friday and I now have hydralazine listed in my records among the many meds I can't tolerate.
     Interesting question about the contrast dye, but I woke up with the symptoms before going in to get the CAT scan, so that rules out that possibility. Hepatitis is an unforgettable sensation and very unpleasant. I hope nobody else here knows first hand what it's like! Hugs, Pam. spirlhelix@yahoo.com


Jack D's October 28 reply to Pam's October 26, 2003 - Hi, Fulminant Hepatitis isn't a different type of hepatitis. It is acute Hepatic Failure as you can read about at http://www.fpnotebook.com/GI63.htm, which shows the different causes for fulminant hepatitis (acute hepatic failure)and drug inducement is only one of the causes.
     Hepatitis may have physical symptoms for some people, but for most the symptoms only show up after the disease has progressed. I have, or rather had, Hepatitis C. They have no idea how long I had the disease but I had no symptoms even though my viral load and liver enzymes were very high. I'm one of the lucky ones who actually responded to treatment. After 18 months of Interferon treatment and two years of tests afterwards my doc proclaimed me cured. It can be killed but the treatment only works 15% to 20% of the time. maddjak@hotmail.com


Jim I's October 28 reply to Timothy C's October 23, 2003 - Hi, Regarding a transplant, my Dad was transplanted on 10/02 this year. He's still in the hospital, and has gone through several complications, two of which were "iffy" to make through. As his cardiologist told us however, he had one foot over the cliff and was barely balancing when he had this done. We've gone through kidney, lung, and liver failure; acid in the blood; 2 infections; heavy sedation and countless other things. However, it was something that had to be done. Several doctors had given him days to weeks to live. At only 55, he still had many years left to go, and it wasn't fair for him to lose that because of genetics.
     I would first strongly encourage you to get second and third opinions on transplants. I would look at other options as well. We discussed putting an LVAD in Dad, but didn't because of the risk. It is a huge life-altering experience, but now my Dad will be able to see my sister graduate from college in a couple of years, celebrate Christmas with his family, and just be around (hopefully) for a long time.
     This has not been easy on any of us. However, we had no other option. Use the options you have and see where it goes. Contact me if you'd like to know more about our good and bad experiences. jiminmanjr@yahoo.com


Tom S' October 28 reply to Timothy C's October 23, 2003 - Hi, It may be easy for those of us who have played the heart transplant odds and won without one, at least for the time being, but what of the ones we will never hear from, those who took the same chance and drew snake eyes with their roll of the proverbial dice? In retrospect I believe it is pretty cavalier and probably self serving for those of us who have opted not to go the transplant root to brag about our longevity. Are we really doing justice to those who have successfully been a transplant recipient and have been rewarded with years of a quality of life we have long forgotten existed? bigheart@muchomail.com


Jon's October 28 reply to Tom S' October 28, 2003 - Hiya Tom, I hope you're feeling better! I acknowledge your point of view but would like to add a bit. Sometimes we find it easy to advocate a decision that was right for us to others for whom it might not be proper.
     However, my decision not to transplant years ago when my heart function seriously nose-dived was not lightly made. My advice to those facing such a decision now is not lightly given.
     There is yet another way to look at it. What about the "other" group whose story we never hear: Transplant recipients who may never make it out of the hospital post-transplant or who never have another "good day" in their very short lives? It happens more than the medical "transplant community" likes to admit.
     I would recommend pretty much what Jim does for starters - get a second and third opinion so you have a good idea what your options really are. Make sure these opinions are from real heart failure specialists: doctors who know all the options that even might be available to you. Then decide if your situation is serious enough to merit changing one set of problems for another. Sometimes it is and sometimes it isn't.
     What stinks is the uncertainty no matter which way you go! ;-) Jon.


Sue, October 28, 2003 - Hi, I am 34 years old and recently diagnosed with CHF as an after effect from chemo and radiation as well as a bone marrow transplant. I had non-Hodgkins lymphoma 9 years ago. My last echo showed an EF of 20%. I was wondering if any of you have any good low-sodium cookbooks that you use or a site to get recipes from. I have learned a lot just from the previous posts. I wish you all well. Sue. sonosue@earthlink.net


Ben B's October 29 reply to Timothy C's October 23, 2003 - Hi, Six and a half years ago my doctor told me I'd be lucky to live five years, and that I had to quit work immediately and would never work again. A year and a half ago, the same doctor told me I was too healthy for disability and he could no longer sign my form. I've been working for nine months now and doing fine.
     I can't count the number of people I've read about here who have been told they need a transplant right out of the box. It seems like the first thing out of the typical doctor's mouth. It would be a wonderful thing if there were enough hearts for one out of every 100 people a doctor suggests off-hand will need a transplant. Then there would be plenty for the people who really do.
     Rest assured, nobody is going to give you a precious heart unless you need and want it, and that requires a full transplant evaluation. From what I've read around here, generally that involves a bunch of tests which wind up with them telling you to go home - you're too well. bdbrinkman@juno.comJon.


Darric, October 29, 2003 - Hi, I just wanna say thank you for this site and the knowledge that all are so willing to share. I am only 31 old and I was just diagnosed with CHF. I am scared to death that this might make my life a lot shorter then I had thought but my doctors - or how I like to refer to them as my angels - have told me that I am doing really well, so I keep my head up high and treat every day that God lets me wake up as a gift from Him.
     I can say that my EF was 12% and the MUGA test I just had said that it has risen to 28%, so it looks like I will get to make it to see my son graduate high school and that is all I want to do. Thank you for all the help that you all have provided and keep up the good work. dwbenson2002@msn.com


Larry's October 29 reply to Sue's October 28, 2003 - Hi, Try recipezaar.com for lots of good stuff. Good cooking, Larry. carolthornton@comcast.net


Tom S' October 29 reply to Jon's October 28, 2003 - Hi, I'm in your corner on this one, Jon. My decision not to go forward with a transplant lay in hard study of the cold statistics concerning survivability with a transplant. It looked like a real downward spiral from day one, a lot of pain and suffering (I bet having your sternum split never feels quite right) and the finality of it all struck me. Once your heart is removed there is no going back, you are stuck with the "new" heart and all the anti-rejection meds and side effects caused by them, plus frequent heart catheterizations, blood drawings, etc., for the rest of your life. It all boiled down to a quality of life rather than a quantity of life.
     By the way, I am pretty much still on a downslope, but if I pace myself and rest a lot I can do the minimal things needed to keep our busy house going. Thanks for asking! I hope this message finds you feeling better. Also, my 21 year old son is headed to Iraq with his guard unit, so prayers are always welcome for him and his fellow soldiers. bigheart@muchomail.com


Don C's October 29 reply to Timothy C's October 23, 2003 - Hi, I read the posts pretty much every day and occasionally I will post something. I haven't posted in response to Tim's inquiry, mostly because everyone has to make their own decision. However, I sit here harboring some frustration at some of the comments made.
     I think the important thing that is missing here is that the road to transplant is a long and difficult one that only begins once a doctor makes that recommendation. There are physical tests, mental tests, evaluations and then more tests after those. Once your case gets to the transplant team at the hospital, you then are discussed at a transplant meeting which includes transplant cardiologists, surgeons, coordinators, nurses and numerous others I can't even remember. These meetings take place weekly, with your case being brought up at nearly every meeting. Your progress is monitored and charted by this team.
     Much of the impression I am getting from some of these posts is that people think that once they are told they need a transplant, the doctors goes to the shelf and picks out a nice heart for you, like getting a new fuel pump for a 1967 Chevy. It doesn't work that way. Some of the luckier ones get to stay home with friends and family until the phone rings and your donor heart has been located. Others have to spend months in the hospital away from everybody, hooked up to machines to keep you alive.
     There is no answer to should you have a transplant or not. Your body will tell you when you need one more than your mind. I can tell you from experience. I was told I needed a transplant in 2000 and that I was to sick to work. I continued to work until August, 2002. I was able to stay out of the hospital until March, 2003. In May of 2003, I received a heart transplant. My donor was a 17-year-old young man, whom I thank every day for saving my life.
     Don't spend all your time worrying about transplant. When I really needed one, I didn't question whether I wanted one. The doctors told me about a month after transplant that it was really touch-and-go over the last week before my transplant. I have no doubt that the doctors and the entire transplant team had my best interests in mind the entire time I was under their care. They had no intention of making me go through a transplant if there were other options. In fact, we tried many until they were all exhausted. I don't regret having a transplant and am grateful for the team of professionals whose care I was lucky enough to be under. Pine32@pacbell.net
 
Jon's note: No one who reads my heart transplant section thinks it is that easy!  <g>


Roger G's October 29 reply to Sue's October 28, 2003 - Hi Sue, The best I have found for low sodium cooking is to throw away the cookbook. Salt is used as a part of the cooking formula. It causes food to give up its fluid and helps in many other ways other than adding a salty flavor. Grow an herb garden. I have an indoor and outdoor herb garden. Then have fun with them.
     A simple one is garlic and herb pasta, oregano or chives or whatever will work. Just cook the pasta, drain, and toss with olive oil and herbs. Flat breads are a good no-salt idea. Make your own masa tortillas. Pile them up with homemade salsa and veggies. Get a pizza stone and make your own. Use a bread machine to make the crust. Make your own sauce, simple tomato sauce sprinkled with oregano and basil is great. Hint: Roll the crust on parchment, load it, then bake for 4 minutes and remove the parchment, then bake 4 more minutes. Preheat the stone for 20 minutes at 450 degrees F. I know that with an EF of 20, rolling is hard. Ask a friend to roll it. All the best! roger@hotnights.biz


Roger G's October 29 reply to Pat Y's October 23, 2003 - Me too! Thanks to all of you! rogergthree@earthlink.net


Greta's October 29 reply to Sue's October 28, 2003 - Hi Sue, I am assuming you are new to the site. You bet I can recommend a good low sodium cookbook. I found it on Amazon.com and the recipes are really quite good. The BBQ sauce and Lemon Chicken are hummmm good! The name of the cookbook is "The No-Salt, Lowest-Sodium Cookbook" by Donald A. Gazzaniga. I ordered it along with another low-sodium cookbook published by the American Heart Association. If you decide to order Don's book, I think you will be pleased. Enjoy.
     Jon, this is a question for you. My doctor has increased my Coreg to 12.5mg twice daily. I have heard it can cause weight gain. Is this true? What other, if any, side effects might I encounter? For the record, I was taking 3.125mg twice daily, then that was increased to 6.25mg twice daily, now the 12.5mg twice daily.
     I had an ElectroPhysiology Study on the 28th. I was having near-blackout spells. The EP Study showed no abnormality. The doctor hopes the increase in Coreg will help. I was doing so well, and now this. I think you call it being decompensated. However, like Paul, I have learned to be content in what situation I am in. Blessings, Greta. gjohnson@arkansas.net
 
Jon's note: Coreg raises blood sugar, which does not necessarily mean weight gain. You can get all Coreg info on the Coreg page.


Kate's October 29 reply to Tom S' October 28, 2003 - Dear Tom, Sometimes you can listen to all the experts and still the choice comes down to that haunting little voice in the back of your brain. When I was deciding about bone marrow transplantation, that little voice just kept nagging. The doctors wanted me to be admitted in January. In January, 19 of the 21 patients in the unit died of Legionnaire's disease.
     When I was evaluated at the clinic for a possible heart transplant, the doc looked right at me and said, "We are not about healing, we are about cutting and sewing." My husband I both knew instantly this was not the place for us. Attribute that little voice to whatever your personal beliefs might be, but I have learned that it usually steers me away from disaster. I firmly believe in 2nd and 3rd opinions, but I also know that the little voice offers a valuable opinion as well. Kate. tothymecottage@frontiernet.net


Donna V, October 30, 2003 - Hi, I saw my cardiologist today and he actually answered more of my questions than ever. I think I found the key to that and reading this site every day made the difference in the questions I asked and how I asked them. I wrote him a week or so ago and sent along my rehab charts and my own charting of blood pressure and heart rate as I presumed he'd be bumping up my Coreg to 50mg a day. He did and I will do it slowly. I know he read my letter and he knows who I am now. I have had great confidence in him but now I like him better.
     He did an echo and an EKG. My heart has not shrunk nor has my EF increased above 15 to 20% but I am well compensated and class 2. Thanks to this site I knew that, but it was good to hear him say so. I was a definite class 4 in April when first diagnosed.
     I'm still not interested in seeing a tranplant team somewhere but now I know I am a good candidate at some point for a new biventricular pacemaker. Thank you again! There's information and hope on this site. I told my doc to check it out too! dmvditty@aol.com


Joe S' October 31 reply to Jon's October 18, 2003 - Well Jon, The weight gain was not good and they switched me back to Lasix at 40mg. Too bad, I sorta liked it. I am losing the weight again very slowly and can foresee feeling much better in the long run.
     I just heard a good friend of mine has an arteriovenous malformation at the base of his spine. Has anyone ever heard of this and what can be done about it? The cardivascular surgeons want to operate and he doesn't. Joe S. jes@gbis.com


Tony, October 31, 2003 - Hi, I haven't posted here in a long time. I figured I would post a little update about my experiences with CHF, and what I did about it. To me, having heart failure that is not related to CAD, there are 3 important things that I have had to get control over:
     Blood Pressure. The blood pressure in the doctor's office doesn't always represent blood pressure taken at home. Home has a different environment with many different irritants that can increase my blood pressure. I want my blood pressure as low as possible, so my weak heart doesn't have to struggle to do its work. I measure my blood pressure 8 times per day and have about 12,500 readings, telling me which medicine works the best for me and telling me which medicine is not worth taking, and telling me what "triggers" will exacerbate my blood pressure. It also tells me which times of the day and night my blood pressure gets the most dangerous, so I can take steps to protect myself during those times. (circadian rhythm)
     Heart rhythm. A heart that is not beating correctly is a heart that is irritated. I want my heart beating very softly and slowly and restfully. I want to give my heart the best chance to survive and rebuild. I have taken many steps to get my heart beating somewhat correctly, and my results have been good.
     Control of medicines. I don't believe that one size fits all when it comes to heart medicines. I asked myself, do I really need to take one XYZ pill three times a day? Would 3/4 of a pill three times a day do better for me? The government requires drug companies to test their drugs, but there are few requirements about testing how multiple drugs do together. More than one heart medicine, to me, means more severe side effects. For instance, through my great cardiologist, I have adjusted every medicine I take, and have stopped taking those that do me more harm than good. I also separate my meds by at least one hour, and sometimes two. The results have included fewer side effects, and a better quality of life.
     The key to my being able to get control over my own heart disease is my keeping a log of events, side effects and blood pressure. It has taken me years to learn what I have learned about my own heart disease. How does a doctor learn all he needs to know by a 30 minute visit in a sterile office? I believe I would have been dead by now if I hadn't taken control, and made significant changes in my treatment, lifestyle and my environment. Just thought I would pass this on. Best regards to all, Tony. t0nyt@yahoo.com
 
Jon's note: Current standard practice in CHF meds trials is to add the trial drug to standard CHF therapy of beta-blocker, ACE inhibitor and diuretic so multiple drug testing is now standard procedure. It did not used to be that way, though.


Dan S, October 31, 2003 - Hi, I am a CHF patient with a dual chamber pacemaker and epilepsy. I have been getting rashes and very dry itchy skin a lot. I know that all my medications have this skin condition as side effects. I am trying to see if anyone has an idea to alleviate the rashes and dry itchy skin. I have tried a lot of skin lotions like Keri, Lubriderm, etc. I have used a product called acid mantle in the past. Please help. God bless. dansarc22@netscape.net


Bernard Z, October 31, 2003 - Hi, Why all the salt water? I spent 43 hours in he hospital this week and had bag after bag of saline water by IV - no medication in it, just salt water. My ankles,legs and belly swelled and swelled and swelled. My blood pressure went up and up and up. My heart failure specialist was 120 miles away.
     One doctor on hand ordered it stopped but was overruled by the doctor who had me admitted through the emergency department. I protested to no avail so I had to insist on being discharged. I got out of there before they killed me. I know a heart patient has to have an IV ready to go, but why not plain sterile water? Bernard Z. bernardz@cox-internet.com
 
Jon's note: Unless there are circumstances I don't know of, there is no excuse for that.


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

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