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

Lori K 2-16     seek LBBB experience with pacers
 
Anita S' 2-16 reply to Barbara H's 2-13     Coumadin to heparin experience
 
Dan S' 2-16 reply to Jon's 2-13     lower sodium suggestions in press
 
Jon's 2-16 reply to Dan S' 2-16     lower sodium suggestions in press
 
Kate's 2-16 reply to Jon's 2-14     no transplant for me
 
Peggy's 2-16 reply to Barbara H's 2-13     heparin experience
 
Evelyn 2-16     does low potassium affect heart rate?
 
Jon's 2-16 reply to Evelyn's 2-16     low potassium and the heart
 
Robert 2-16     do beta-blockers make anyone depressed?
 
Scott Brown's 2-16 reply to David Wilson's 2-14     Coreg dose
 
Jon's 2-16 reply to Scott Brown's 2-16     update on me
 
Barbara's 2-16 reply to Andy P's 2-13     altitude experience
 
Joyce 2-16     is this from Coreg?
 
Jon's 2-16 reply to Joyce's 2-16     I do not believe so
 
Jon 2-18     posts and BNP versus proBNP testing
 
Donna V 2-18     seek muscle pain experiences
 
Steve 2-18     seek working/health insurance tips
 
Clara D 2-18     what does 50% heart function mean?
 
Gatha 2-18     why always fighting fluid retention?
 
Jon's 2-18 reply to Gatha's 2-18     fighting fluid retention
 
Lisa Ricks 2-18     broke, scared of new symptoms
 
Jon's 2-18 reply to Lisa Ricks' 2-18     possibilities
 
Susan L 2-18     has anyone used EECP?
 
Tom S' 2-18 reply to Kate's 2-16     path to survival, quality of life
 
Valerie R 2-18     awful day, seek hypothyroid experiences
 
Lane's 2-18 reply to Joyce's 2-16     a-fib experience
 
Lane's 2-18 reply to Deb's 2-12     get a doctor who listens
 
Lena 2-18     seek anyone with CHF from pregnancy
 
Vee's 2-19 reply to Donna's 2-18     try vitamin D
 
Jack D's 2-19 reply to Gatha's 2-18     fighting fluid retention
 
Joyce 2-19     what is a-fib versus PVCs?
 
John D 2-19     seek BNP numbers experiences
 
Pat W R's 2-19 reply to Lena's 2-18     CHF after pregnancy experience
 
Jacky's 2-19 reply to Valerie's 2-18     amiodarone experience & more
 
Deb's 2-19 reply to Lisa Ricks' 2-18     PVCs experience
 
Deb 2-19     update and thanks
 
Lisa Ricks' 2-19 reply to Jon's 2-18     it sure is frustrating
 
Crystal S' 2-19 reply to Lena's 2-18     "PPCM" experience & more
 
Kathy H 2-20     seek arthritis forum and web site
 
Joy's 2-20 reply to Joyce's 2-19     heart rhythm problems
 
Jacky 2-20     what is SVT and more?
 
Deb 2-20     update on my daughter
 
Davida S' 2-22 reply to Steve's 2-18     work/insurance possibilities
 
Dan S' 2-22 reply to Valerie R's 2-18     amiodarone/thyroid experience
 
Joy's 2-22 reply to Jacky's 2-20     SVT
 
Lena 2-22     thank you
 
Tony T 2-22     verapamil experience
 
Carolyn 2-22     is Darvocet and warfarin a surgery risk?
 
Carolyn 2-22     what might be alternatives?
 
M Bishop 2-23     intro, thanks
 
Ruthie A's 2-23 reply to Carolyn's 2-22     straight Darvon is available
 
Steve 2-24     update, thanks, prayer request
 
Tom 2-24     stem cell therapy questions
 
Jon's 2-24 reply to Tom's 2-24     stem cell therapy
 
Sandy's 2-24 reply to Carolyn's 2-22     stand-alone narcotic pain killers
 
Vee 2-24     ARB plus ACE inhibitor question
 
Jon's 2-24 reply to Vee's 2-24     ARB plus ACE inhibitor
 
Lee R 2-24     to have surgery or to wait?
 
Jon's 2-24 reply to Lee R's 2-24     pros and cons
 
Carolyn Knight's 2-24 reply to Ruthie A's 2-23     thank you
 
Lisa 2-25     
 
June 2-26     how much exercise is too much?
 
Vince 2-26     do I need a diuretic?
 
Jon's 2-26 reply to Vince's 2-26     taking diuretics
 
Kate's 2-26 reply to June's 2-26     perhaps cardiac rehab
 
Kim 2-26     does anyone else have this problem?
 
Evelyn 2-26     how long to get results?
 
Dan S' 2-26 reply to Vince's 2-26     weight gain can be serious
 
Dan S' 2-26 reply to June's 2-26     listen to your body
 
Eileen 2-26     Coreg & a-fib - anyone else?
 
Tom K 2-26     some questions
 
Jacky's 2-27 reply to Kim's 2-26     switching to ARB helped my cough
 
Myrtle C 2-27     salt substitute suggestion
 
Sheryl C's 2-27 reply to Kim's 2-26     ARBs, Coreg, doctors
 
Tom K's 2-27 reply to Jon's 2-26     I am intolerant of ACE inhibitors
 
Evelyn's 2-27 reply to Val's 2-18     I hope your days get better
 
Jack D's 2-27 reply to Myrtle C's 2-27     tip for living without salt
 
Lane's 2-27 reply to Evelyn's 2-26     EF improvement
 
Lisa F 2-27     thank you
 
Evelyn 2-27     am I still a CHFer? & more
 
Evelyn's 2-28 reply to Lane's 2-27     explaining my post
 
Ernest Du Sablon's 2-28 reply to Susan L's 2-18     EECP & Ornish Diet experience
 
Sandy 2-28     has anyone heard of this?
 
Ernest Du Sablon 2-28     doing all that I can
 
Allen 2-28     update on Wanda & more
 


Lori K, February 16, 2004 - Hello everyone, I have had a left bundle branch block since I was 29 (15 years). I was diagnosed with IDCM in 2001. I am on Zebeta, Altace, Flovent, and Serevent. My EF has been running between 40 and 55%. My regular cardiologist talked to me about the need down the road for a biventricular pacer. My QRS complex is elongating to about 149 currently. Do most people wait until you start having worsening arrythmias or do you proactively get a pacer? I am under the understanding this would not be done until my EF fell to around 35%.Can anyone with LBBB shed some light on this for me? Thanks, Lori K. thegoof86d@aol.com


Anita S' February 16 reply to Barbara S' February 13, 2004 - Hello Barbara, My husband Phil, always has to switch to heparin before he has any procedure done. He usually starts the heparin about a week before. Either he or I give him his shots so he doesn't have to stay in the hospital to have it done. He has never had a problem with this.
     After a hospital stay for a blood clot though, while on heparin, they did have to keep him for a few extra days to get his INR level right. Good luck to your dad with his upcoming cataract surgery. I am having cataract surgery this coming Tuesday, so if you have any questions feel free to ask me. Take care. dreamersila@netscape.net


Dan S' February 16 reply to Jon's February 13, 2004 - Hi, Actually it's not about people paying attention. I don't think most people notice or care about salt intake but food processors do take note and base their salt intake on 2400mg recommended daily. Unfortunately that does not change how much salt they put in process food. With this new requirement they will have to reduce that intake level and since most people get their salt from processed food and not by adding it with the salt shaker this could make a difference. My biggest problem has always been the amount of salt that is in processed foods and mixes. My wife is constantly using half a box of something and cutting it with fresh ingredients to reduce the salt per serving. A half-box of Rice-A-Roni with 1/2 cup raw rice is an example. This new initiative is worth a try and only time will tell if it helps or not. Cavalier_1@msn.com


Jon's February 16 reply to Dan S' February 16, 2004 - Hi Dan, I was referring to food manufacturers in my 2/13 note. Maybe you saw reduced sodium in processed foods in your area after the daily requirement was officially lowered to 2400mg a couple of years ago. I did not, so I don't think that manufacturers in general are paying attention. That's just a personal opinion, though. ;-) Jon.


Kate's February 16 reply to Jon's February 14, 2004 - Hi, No transplant for me. I dropped out of the program a while back. After a year in the program I realized it just required my being a patient too much of the time. Whatever time I have left I want to spend just being, not being a patient.
     I have been dealing with life threatening illnesses for nearly 25 years and when the end comes I just want to be able to say I enjoyed myself while I was here. I've had entirely too much poking and prodding for one lifetime and I realized that the heart transplant route was entirely too much for me. Since I have that attitude, there is no way I'm going to take a precious heart from someone who really, really, really wants one.
     Like I said, I have no intention of checking out any time soon. There's always a new med or a new trial waiting round the bend. Kate. tothymecottage@frontiernet.net


Peggy's February 16 reply to Barbara H's February 13, 2004 - Hi Barb, My husband was taken off Coumadin and then put on heparin when he was admitted to the hospital. He was having an infected pacemaker taken out and is in A-fib all the time. They ended up having to take him off the heparin because it caused his platelets to go too low and he ended up having to get numerous vitamin K shots. This was 3 weeks ago and he is still really low and having trouble getting his INR back to normal. RyoungAngora4683@aol.com


Evelyn, February 16, 2004 - Hey all, Has anyone heard of low potassium causing palpitations as I just spent the last 5 hours in an ER. I was watching thr race with hubby, just kicked back in my recliner, and around 3:20 PM it started. It was just like my heart took off and was joining the race. My pulse was up to 136 bpm when I checked it.
     I was hoping it wouldn't last long because I didn't want hubby to miss the race so I waited, but a little after 4:00 PM I decided we'd better go get it checked out. When I got to the hospital it was around 125 bpm but - something I don't understand - my blood pressure was only 102/67. I will be calling my CHF doc.
     Before I left the ER a new doc came on and he came in to talk to me. He said my potassium was 3.2 and that may have caused it so I pose this question to y'all. Has anyone ever heard of this? I feel fine now, like it didn't even happen, except I missed and more importantly, hubby missed, the race. Take care all. Evelyn. eveysue@hotmail.com


Jon's February 16 reply to Evelyn's February 16, 2004 - Hi Evelyn, Low potassium level can cause palpitations, arrhythmia and even cardiac arrest! See www.chfpatients.com/stew/minerals.htm#k. Jon.


Robert, February 16, 2004 - Hi, Does anyone else get severely depressed on Coreg and other beta-blockers? hawkdog86@aol.com


Scott Brown's February 16 reply to David Wilson's February 14, 2004 - Hi David, If you are having problems tolerating your current dose, talk to your cardiologist about lowering the dose to the next level. I believe Coreg prolongs life but it can also make you feel lousy. What good is prolonging life if you cannot have some quality? If you are up to 50mg, you can still get lots of benefit at a lower dose. Don't get too hung up on EF. As John has written many times, it doesn't say much about how you feel or function.
     Hey Jon, how are you feeling these days? How about an update on your condition? I'm sure everyone is interested. Thanks, Scott Brown. kitchenerguy@rogers.com


Jon's February 16 reply to Scott Brown's February 16, 2004 - Hi Scott, Heart-wise I am holding my own. I sure do retain a lot of fluid for a guy with such a good EF, though. I had to drain off 4-1/2 pounds yesterday with 40mg Demadex (torsemide). I currently have a torn left forearm muscle and severe arthritis in my right knee, bad enough to cause me to buy a cane for when I have to do a lot of walking. I bought a carbon fiber cane though, so it only weighs about 7 ounces but will support a 220 pound man. <g> The arthritis in my left knee only bothers me from time to time. Jon.


Barbara's February 16 reply to Andy's February 13, 2004 - Hi Andy, My husband has COPD, CHF, several blockages in his heart, and other lesser problems. After Christmas we made a long-awaited trip to Arizona and drove from Bisbee to the Grand Canyon. The high altitude at the Grand Canyon was very hard on him. He got out of the car to walk to an overlook one time and I thought he wouldn't get back to the car.
     Even though the altitudes were in the 4 and 5 thousands at Tombstone and Bisbee, he was always extremely tired by the end of the day. The flight across country and back, plus the high altitudes out there, really did a number on his health. He has not been able to leave the house except for doctor's appointments since we got back.
     He went for a routine lung appointment and the doctor noted a problem with his heart. An EKG showed he was in a-fib and he was admitted to the hospital by his cardiologist. He was told while in the hospital that if he didn't stop smoking he probably wouldn't live more than a few weeks. So, it might have been the combination of lungs, heart, and smoking that caused his problem. barbara.rogers@ngc.com


Joyce, February 16, 2004 - Hi, I have some questions in regard to Coreg. My husband has been on Coreg for 4 years. Lately he has been having a-fib almost daily. Does this mean Coreg may be losing its effect? How can I tell if Coreg may no longer be doing what it should? Since reading some of the posts on Coreg I just have more concerns now. jas48@webtv.net


Jon's February 16 reply to Joyce's February 16, 2004 - Hi Joyce, I seriously doubt that Coreg "losing its effectiveness" has anything to do with it. Looking back over previous posts, I am not convinced that Coreg "losing effectiveness" is the root cause of Kate's CHF recurrence, although it is possible, and different beta-blockers work far better for different people. Please note that even her own cardiologists were split over whether to change her beta-blocker.
     A-fib is common in the general population and even more common in CHFers, Coreg or nor Coreg - it just seems to develop more easily in weaker hearts. Jon.


Jon, February 18, 2004 - Hey everybody, It was a couch day yesterday for me! More posts will go up later. I have some things to catch up on before catching up all the posts.
     Anyhow, regarding BNP and proBNP, I got some info from my own CHF doc but have still not researched it. ProBNP is thought to be slightly more accurate than BNP for diagnosing CHF. However, it cannot be done "here and now" like BNP testing done with the Triage test kit - it requires lab processing. Personally, I don't see much advantage to it, but maybe further research will turn something up. Jon.


Donna V, February 18, 2004 - Hi all, I think I wrote sbout leg/muscle pain several months ago and my feedback was to get off a statin. I've never been on a statin. I take 80mg of Lasix a day and 25mg Aldcatone and potassium twice daily. I exercise at cardiac rehab but whether I exercise or not, my neck, leg, shoulder, calf and other muscles just hurt. My docs do not seem too concerned. Dare I play with my Lasix? I really think I'd feel good except for these aching muscles. Is anyone else experiencing this? Any thoughts? Is this just part af the territory? Thanks, Donna. dmvditty@aol.com


Steve, February 18, 2004 - Hi, I was wondering if anyone has any ideas on how to work part-time (that is all I can handle) and still aquire insurance for doctor visits, when I need my transplant and for my meds. I am 21 years old and do not have enough working credits to be eligible for Social Security Disability. I currently have disability benifits from my last job as a constuction apprentice but I will lose them if I get a new job or by next October. Thank you so much for any help in this. Maybe I could get some sleep if I could find peace of mind. hydrocurrent@msn.com


Clara D, February 18, 2004 - Hi everyone, Yesterday I ran into a neighbor whose house has been put on the market. She said they were moving to a one-level house because her husband was having increasing difficulty with the stairs. She went on to say that he only has "50% heart function." I didn't want to ask her a lot of questions but wonder just what that means in terms of EF or other factors which I do understand. Can anyone help me out? Thanks. Clara. ncdossetts@aol.com
 
Jon's note: Really, the only way to know what she meant is to ask her for specifics. We can only guess.


Gatha, February 18, 2004 - Hi Jon, I am relieved that someone else is having weight gain problems with fluid. Why--after following the salt free diet and trying to do everything right--do we still have problems with fluid? It is driving me crazy and also my doctor. He has changed Demadex to Lasix and back again trying to get the fluid off me. Do we always have to visit Club Med to get it all off? I have refused to go into the hospital but it's getting to the point that I feel like I am losing the battle with fluid. I weigh every morning when I first get up and I can lose 3 lbs one day and gain 4 lbs the next day. Right now, I have 10 lbs of fluid gained in 1-1/2 weeks. Help! Jell855859@aol.com


Jon's February 18 reply to Gatha's February 18, 2004 - Hi Gatha, If low sodium diet and diuretics don't do it, sometimes your "standard therapy" needs to be more aggressive. You may need higher doses of some of your meds or you may need an ARB or drug like eplerenone added. This relieves the load on your heart further, reducing fluid buildup. Of course, dropping your sodium intake even further may help, as my limiting daily fluid intake to 2 liters or less.
     Then again, it may be something you just have to keep fighting, maybe even go to Bumex as a diuretic. I just keep fighting it myself, even with a very good EF. If you take Lasix, don't eat within 2 hours before or after taking your Lasix pills - you'll pee up to 50% more. Jon.


Lisa Ricks, February 18, 2004 - Hi Everyone, I haven't been on the forum in a couple of years. I know everyone will probably tell me to go to the doctor. I desperately need to, but currently I am without health insurance and am trying to pay off an old bill and pay for my son's (he has DCM also) new bill.
     If anyone feels like responding, I would be glad to hear your thoughts. I am on an ACE inhibitor and Coreg. Recently I have started having increased, almost continual, bothersome irregular heart beats. I have a history of PVCs, which I know are common. I have never had dizziness or the feeling that my chest was caving in on itself until now. My blood pressure has also been much lower than usual. Along with these things, my ears feel full, like I need to pop them. I'm not sick or anything and the ear thing may not even be related.
     Has anyone had a similar experience as a set of new symptoms? I am a little scared and trying to figure out how to get to the doctor and pay for the tests that I am overdue for, so I feel sort of trapped and would welcome just any support. I haven't enlightened my husband because he gets very uptight. Our family history is very tragic and he just doesn't handle the stress of the whole thing very well if I'm not feeling good, so I pretty much keep it to myself and try to be as normal as possible. Thanks for any response. lricks@mac.com


Jon's February 18 reply to Lisa Ricks' February 18, 2004 - Hi Lisa, I certainly sympathize. I hope others reply since the more ideas, the better! What worries me is the combination of dizziness with chest sensations. You may not be having PVCs, but rather a new and potentially dangerous arrhythmia. Unfortunately, only an EKG done during a "run" or a Holter monitor will tell for sure, and that costs money. Arrhythmia can kill you though so don't hesitate too long.
     On the other hand, it might just be low blood pressure and dehydration, so be sure you drink enough water, and at least go to the grocery store and use their blood pressure machine every day for awhile to check that.
     If you have a previous cardiologist you liked, ask if he can talk to you on the phone for some "unofficial" advice. Jon.


Susan L, February 18, 2004 - Hi, Has anyone tried EECP, enhanced external counter pulsation? I was hunting around on the Internet and came across this. It is a procedure that is supposed to increase blood flow. I just wonder how effective it is for CHF patients. susanlocurto@hotmail.com


Tom S' February 18 reply to Kate's February 16, 2004 - Hi, Several factors including quality of life over quantity of life led me pretty much to the same conclusion regarding a heart transplant. That was seven years ago and I was basically told I would not survive a year without it.
     I recently had several scans and heart stress tests done because of some odd chest pains and fluctuating blood pressures, but when all was said and done there was nothing organic causing it. Blood vessels were clear and unobstructed ("like a 20 year old") and there was nothing else other than the "previous damage" according to the doctor.
     The previous damage consists of a grossly enlarged heart and an EF of between 15 and 20%. I believe it was caused from stress over my 21 year old son being deployed to Iraq for the next year. Unfortunately he was dragged out of his senior year of college to be deployed with his National Guard unit here in North Carolina, which was distressing in and of itself.
     I believe I have survived with a lower quality of life to see my minor children grow to maturity because I take my meds as prescribed, rest when I am tired, and live pretty much a low impact life and don't push the envelope too much. I still have 4 of my 9 children living at home--ages, 10, 12, 13, and 16--so I definitely have a lot to live for. They are very loving and helpful children and rarely cause us a minute's trouble other than the normal teenage stuff. bigheart@muchomail.com


Valerie R, February 18, 2004 - Hi, I am having a very bad day. First, the vet calls and says the tumor they just removed from my dog is type 2 malignant. Then my doc's office calls and says that my latest blood test for thyroid shows it is underactive and he wants me to go to an endocrinologist. The medical assistant said he thought it might be a side effect of that awful stuff I take--amiodarone--and that it is not a good thing. Okay, I really hate days like this! Has anyone out there had the thyroid problem? vgrogers@aol.com


Lane's February 18 reply to Joyce's February 16, 2004 - Hi Joyce, I saw your post about a-fib. I have gone to the ER 3 times with a-fib. It started with a racing heart rate but in my case, I also was graced by the presence of a-flutter.
     The docs I have tell me the a-fib is a common occurence in us as Jon mentioned. They added amiodarone (Cordarone) to my drug cocktail and when I didn't convert back to sinus rhythm 3 weeks ago, they zapped me. It's called cardioversion - they put you under and then shock you to hopefully get your heartbeat back to normal or "sinus" rhythm.
     Coreg wasn't a factor for me, it's just another symptom we get from membership in this club. Drop me a line if you have any questions. I don't know if I'll know the answer, but I'll certainly try. fastlanedelivery@flash.net


Lane's February 18 reply to Deb's February 12, 2004 - Hi Deb, Fire your cardiologist if they refuse to see your daughter. Go to another one, as we see they can be mistaken on the diagnosis. If you're anywhere near Dallas, let me know. I have a great doctor and he doesn't mess around when he's stumped by something. He called in an EP doctor when I had difficulty converting back to normal sinus rhythm the last time I was in the hospital.
     I hope things work out for the better and your daughter or you shouldn't be enduring such problems. If I can help, let me know. I also have a good ear for listening, something we all need at times. fastlanedelivery@flash.net


Lena, February 18, 2004 - Hi everyone, I am new to this site. I was just recently told that I have CHF. I am 29 years old and they seem to think that it happened to me after I had my little girl this past December. My EF is 30% and I am on different meds. I have to go back to the doctor every 2 weeks so they can adjust my meds until they have me on the highest dose I can tolerate.
     I have so many questions I don't know where to start. I just wanted to stop in and say hi, and to see if anyone else went into heart failure due to pregnancy. I ave never heard of this. I had no complications due to pregnancy. Farmgurl1974@aol.com


Vee's February 19 reply to Donna's February 18, 2004 - Hi Donna, You might try taking a vitamin D supplement and see if that helps, especially during winter months. It's certainly cheap and easy to try. It worked wonders for my aching legs and bones when tinkering with my potassium and stopping the statin did very little. You can read more about vitamin D deficiency at www.mayo.edu/proceedings - search for the editorial and article in the December 2003 issue of Mayo Clinic Proceedings. imagine_@earthlink.net


Jack D's February 19 reply to Gatha's February 18, 2004 - Hi Gatha, I've fought with the fluid for a long time and diuretics wouldn't work if I used them every day. So now I am on 20mg Demadex with 100mg Edecrin and then two days later 20mg Demadex with 120mg Lasix. This same protocol is followed every two days but it works. It took a lot of pressure from me to get the doctor to agree to it, but it is great. maddjak@hotmail.com


Joyce, February 19, 2004 - Hi, What exactly is the difference between a-fib and PVCs? They sound pretty much the same to me. My husband has been converted twice and the docs said they would not convert him again. Sometimes it is hard to know when I should be concerned. jas48@webtv.net


John D, February 19, 2004 - Hi Everybody, I'm a current reader on this board and have been for many years. I'm seeking anybody's experience with rising BNP numbers. My last test my BNP was 520 and in December of 2003 my BNP was 442.
     Does the BNP number fluctuate much and what can cause it to rise so quickly? I'm currently listed for a heart transplant. My EF is 25% and my Vo2max is 14.8 ml/kg/min. My transplant specialist said he would not call me right yet if a heart became available but he wants me to accumulate some time on the list.
     I value everybody's opinion on this board and your input would be greatly appreciated. I'm losing a lot of sleep worrying about my BNP number rising. I walk 1-1/2 miles a day and have the normal shortness of breath associated with this disease. However, I am able to go to the store, cook, and maintain the house, etc. I also have an implantable ICD unit and pacemaker. digger@voyager.net


Pat W R's February 19 reply to Lena's February 18, 2004 - Hi Lena, Yes, I too was diagnosed with peripartum cardiomyopathy. I had never heard of it either. The docs I had at the time told me it was some phenomenon that happens rarely. They told me you either fully recover (if you improve in the first 3 months) or you die. What a shocker that was to me! The cardiologist I had at that time told me to get my affairs in order.
     I had just had my son two months earlier, and now I'm looking at the grim reaper?! Well, that was over 7 years ago and I am still here. I must tell you that I was or so I was told, totally free of any heart disease for two years, then in 2003 it returned. Please seek out a good CHF doc or a good cardiologist, since general physicians really don't know in depth about this disease. They will tell you all kinds of scary stuff. I was never really clear on the explanation of the "phenomenon" of how I got the disease. I was told that it was a mystery hormone, produced and released by pregnancy, that went amok in my body. I have gotten over the "how" of how I got it. Now I'm only concerned with maintaining good health with it.
     I know this is a scary time and I sympathize with you. E-mail me direct if you have any questions or just wanna talk. I wish you the best. Pat Wright-Roll. rollinright@cableone.net
 
Jon's note: You're right - those docs were terribly ignorant - see www.chfpatients.com/heartbytes.htm#PPCM. PPCM is from the added stress on your heart of beating for 2 people: You and your unborn baby. Some women's bodies overload, thus CHF.


Jacky's February 19 reply to Valerie's February 18, 2004 - Hi, I am on amiodarone also and have been for 3-1/2 years. When I first took it, my Synthroid had to be increased quite a lot from the dose I had taken for 12 years! It doesn't really seem to be a problem - it is one of the lesser side effects of the drug!
     I am so sorry about your dog. Having lost a dog to cancer I know how heart wrenching it can be. jackymwb@earthlink.net


Deb's February 19 reply to Lisa Ricks' February 18, 2004 - Hi Lisa, My daughter also has PVCS and still gets them, although not anywhere near what she used to, but they are still bothersome to her. It is strange that you mention the ear thing, since she also has this complaint. I don't have any info for you, I just wanted you to know that you are not alone. Deb. mommajayne@hotmail.com


Deb, February 19, 2004 - Hi, Well, after calling a few days and not getting a call back from my daughter's cardiologist, I called a different place, as recommended here, a teaching hospital, Loyola in Chicago. She also had developed a new thing on top of all the others. She has always complained of getting a shooting pain, going from her chest to her armpit on the left side where the device is, but about 2 inches or so away. I felt it and there is surely some kind of swelling happening there. It isn't hot or red, though. This is going to be more information than she would want me to share, but the veins in this breast are also deep blue and sort of prominent, not terribly, but somewhat, so this was a big concern to me.
     The doc we saw today, was concerned as well. He is afraid of a clot. So tomorrow, we are going for a vascular ultrasound to check that out. He felt the swelling as well. It could be scar tissue pressing on a nerve but he wants to be sure. He is also going to test her for lupus since he said her description of the pain and the locations is typical. He also said that lupus can cause DCM and pleuritis, which she just had and wondered why she never had a cath to try to determine the cause of her DCM.
     After we have gotten through these tests and he has seen a copy of her last echo, he is going to order all the other tests that I have seen Jon recommend here. I don't remember them exactly so forgive me but the Vo2 thing was one of them. So maybe the third doc will be the charm and we will figure out what is going on with her.
     He did also say that if it isn't lupus causing all her pain, it could be caused by her device, especially considering all the trouble her body gave her when it was first implanted with the pericarditis and pericardial effusion. He said, some people's bodies just don't like things in them that don't belong and it could be a sympathetic kind of pain but this would still need to be treated because it is a real pain. Thanks everybody, I just wanted to give you an update. mommajayne@hotmail.com
 
Jon's note: If you're close to Chicago, remember Marc Silver as a possible CHF specialist.


Lisa Ricks' February 19 reply to Jon's February 18, 2004 - Thanks, Jon. I appreciate your input. I have had the same thoughts regarding a new type of arrhythmia. I have had two holter monitors in the past as well as the 30-day event monitor, and they are very valuable tools. I am going to have to figure something out regarding a doctor visit. It has been 2 years since my cath and they have continued to refill my prescriptions. I explained my situation to them and they have been very tolerant but are cutting me off at the end of March.
     The health insurance problem is very frustrating. I can get it through a high risk pool but it is very expensive. Once you sign up if you ever withdraw you can never sign up with them again so I have been hesitant until I am sure I can manage the premiums. Thanks for your support. lricks@satx.rr.com
 
Jon's note: I understand the expense! We are using COBRA to cover my wife and daughter temporarily right now and it is costing us over $800 a month just for the two of them.


Crystal S' February 19 reply to Lena's February 18, 2004 - Hi Lena, I am 26 and was diagnosed last year. My first cardiologist said the same thing, that it was due to having my son. I didn't believe it because after researching PPCM, my experience was nothing like it. I had a perfect pregnancy and delivery. I felt completely fine and even went back to work. I got a cold that lasted for 6 weeks and just wouldn't go away. My doctor said first it was an upper respiratory infection, then that it was sinusitus, then that it was bronchitis. They prescribed an ABC pack, which is what put me in the hospital.
     My new specialist (thank you, Jon) says that it was probably not PPCM, but rather myocarditis that put me in heart failure. Whatever the case, the treatment is the same. Just remember that you're not alone. My EF is 35% finally and I feel good enough to work again. I have 2 kids ages 4 years and 18 months, and we have adjusted to the diet and the physical limitations I have now.
     Educate yourself - it's the best advice I can give you, that and don't be afraid to question your doctor if you don't feel like they've explained things well enough. Take care, Crystal. alanis143@yahoo.com


Kathy H, February 20, 2004 - Hi, my CHF is considered compensated right now. However I am still very short of breath so a pulmonary function test was ordered.
     I recently remarried my ex-hubby and 30 days ago we got legal custody of our toddler granddaughter so I'm staying active. My problem now is that my rheumatoid arthritis is flaring badly and the doctor is trying to get it under control. I am looking for a good web site like Jon's, but for RA. If anyone knows one, I'd love to hear from them. Thanks. Kathy_in_wlsv@verizon.net


Joy's February 20 reply to Joyce's February 19, 2004 - Hi Joyce, Yes, it can be difficult and frustrating to know when it is the appropriate time to seek any intervention with symptoms that are often reccuring and sometimes very frequent. I have had PVCs for many years. At times they are very frequent (my last holter monitor revealed 3,600 in a 24 hour period). I have had many recorded episodes of ventricular tachycardia but only 3 of sustained VT.
     How do they differ from atrial fib? The term arrhythmia refers to the presence of a heart rate and rhythm other than a normal sinus rhythm. PVCs occur in the ventricles of the heart while atrial fib occurs in the atrium. Conversion from these arrhythmias can be accomplished by either medication or by cardioversion. Most times a patient is usually hemodynamically unstable to warrent cardioversion. A rapid heart rate is not the only reason cardioversion is performed. CHF patients may have a rapid heart rate, impaired cardiac function and yet remain clinically stable - cardioversion would not then be the first choice.
     V-tach is nothing to simply wait around and see if it goes away. Persistent V-tach is an emergency. I am very much aware of my PVCs and the symptoms they cause. Being a registered nurse and having worked in an ICU and ER most of my career certainly has helped me manage my own cardiomyopathy/CHF. Don't delay seeking treatment. Even if you make a trip to the ER and it turns out to be a benign type visit, it's okay. I have been a few times with my arrhythmias and no treatment has been given. The best part was the reassurance I didn't need any. I don't know if this has helped in any way. Please feel free to e-mail me. Joy. Pjkachel@aol.com


Jacky, February 20, 2004 - Hi, What does SVT stand for: SupraVentriclar Tachycardia or Sustained Ventricular Tachycardia? When I asked my CHF doc if I could stop taking amiodarone, he said no because I had SVT. I thought I knew what he meant but am now not sure. Supra is better than sustained, right? jackymwb@earthlink.net


Deb, February 20, 2004 - Hi, Well, we had the vascular ultrasound and Sam does have a clot. We don't know what the plan is for treatment yet, as the doc went out of town. Jon, we started at Christ Medical Center, they were the ones who ignored her heart racing to 210 beats per minute, saying she was thinking about being sick too much. I don't know, but I think Marc Silver is an adult doctor. We had no problem whatsoever with her EP from Christ, loved him, it was the cardiologist that was the problem. Thanks all. Deb. mommajayne@hotmail.com
 
Jon's note: You're right, he is an adult doc - I wasn't thinking. He runs the CHF Clinic affiliated with Christ.


Davida S' February 22 reply to Steve's February 18, 2004 - Hi Steve, Is it possible to either find a full-time job that is not too demanding, like pushing paper or answering phones? If that is not an option, why not look into Medicaid? I am not sure if Medicaid covers transplants though. Then my final suggestion is to work a part-time job to pay for Cobra benefits that would probarly run you around $200 to $300 a month, or see if you can apply for Medicaid financial assistance that you could use to pay for the Cobra benefits. You can keep Cobra for 18 months. It will entitle you to the exact same benefits you have with your employer today. If you are not familiar with Cobra, it is a benefit that will be offered to you when your employer stops your disability benefits. It extends your current insurance coverage for 18 months but you pay for it monthly versus your employer paying for it. October is 6 months away and Cobra gives you another 18 months. That's 2 years worth of coverage. Prayerfully you will have had your transplant and be on the road to recovery. Cavalier_1@msn.com
 
Jon's note: If you have and want to keep a prescription drug benefit under COBRA, be prepared to pay a lot more than mentioned here for it.


Dan S' February 22 reply to Valerie R's February 18, 2004 - Hi Valerie, I had the same problem and came here for answers about 6 months ago. It is that dreaded amiodarone (Cordarone). My CHF doctor refused to cut down my amidarone dose but my primary care doctor could not get the right dosage of thyroid medicine for me. My thyroid went from one extreme to the other at one point. The CHF doc told me to take 1/2 pill of amiodarone so that equals 100mg a day. I now take my thyroid medicine every other day. This now makes 2 months of normal thyroid function tests. I go every 30 days to make sure it is still within normal range. Cavalier_1@msn.com


Joy's February 22 reply to Jacky's February 20, 2004 - Hi Jacky, SVT is an abbreviation for Supraventricular tachycardia. Origin is atrial or junctional part of the heart. In answer to your question about which is worse - SVT or sustained ventricular tachycardia - I would answer sustained ventricular tachycardia. However, if the person's heart function deteriorates enough, either dysrhythmia could be potentially fatal without proper treatment. Stay well. Joy. Pjkachel@aol.com


Lena, February 22, 2004 - Hi, I would just like to say thanks to everyone that responed to my post. :-) Farmgurl1974@aol.com


Tony T, February 22, 2004 - Hi I haven't posted in awhile. I've got hypertension, CHF and a-fib. I take digoxin and verapamil, warfarin and an ACE inhibitor. I've had CHF for about 20 years. Recently I decided that I wanted to try and switch from verapamil to a beta-blocker. Everything that I read says that someone with CHF should not be taking a CCB.
     After months of frustration, increased symptoms and bad experiences, I stopped trying to take a beta-blocker. I have determined that I do best with digoxin and verapamil. No other combinations of meds that I have tested over the 20 year period has the same success in treating my blood pressure, chest pains, well-being and heart rate.
     One benefit I received from trying to convert from verapamil to a beta-blocker was that instead of taking verapamil at 7:00 AM, 3:00 PM and 11:00 PM; I take it at 7:00 AM, 5:00 PM and 11:00 PM; and it does a much better job for me. My worst symptoms are at night and the delay from 3:00 PM to 5:00 PM on the middle dose has a significant effect on my night time symptoms.
     Regards, and best of health to everyone. Thanks to Jon for maintaining the best CHF site on the Net. t0nyt@yahoo.com


Carolyn, February 22, 2004 - Hey, I am really freaking out. I have endometriosis and for monthly pain, I am on Darvocet. The pain has just recently gotten worse. I take 2 or 1-1/2 pills at a time. I am having a test done March 3rd and 4th where they are going to go in through my jugular vein and check the right side of my heart. I know Darvocet has acetaminophen in it. I also take warfarin. Am I in trouble?
     I don't want to bleed to death in an outpatient setting. Doctors don't always tell you everything - that much I know! I am scared even if they know I am on it since we know stuff happens. I am taking at least 4 a day. What do I do? I am in Alabama and this procedure is being done at one of the top hospitals, UAB. Talk to me? Carolyn. nannahealed11@knology.net


Carolyn, February 22, 2004 - Okay, I think I am calming down, what can I get for pain that does not interfere with Coumadin? Thanks, Carolyn. nannahealed11@knology.net
 
Jon's note: Most narcotics come with a choice of acetaminophen, ibuprofen, or aspirin as the non-narcotic component - ask for one of these or try a non-narcotic like tramadol (Ultram).


M Bishop, February 23, 2004 - Hi, I am so glad I have found this board. In November of 2003 my grandmother was diagnosed with CHF. It truly was devastating, to say the least. She has been in relatively good spirits about the whole ordeal. I truly think it will be okay in the long run. She doesn't understand the reasons to rest. She still thinks she is 20 years old.
     Well, anyway, we go back this week for her check up and then this summer we will go to the hospital for tests. Sometimes I hope it will all go fine but I plan for the worst, I guess. Thanks so much for an Internet site such as this! Respectfully, M Bishop. tnstudentnurse@yahoo.com


Ruthie A's February 23 reply to Carolyn's February 22, 2004 - Hi Carolyn, I'm sorry you have to deal with such pain. I know it's awful and I hope you can get resolution soon. I suffer from chronic back pain for which I take plain Darvon - no Tylenol, aspirin, or ibuprofen added. That way the pain med is strong enough and yet it does not interfere with any of my other meds. The biggest problem I have with Darvon is that the generic version is no longer available. Ask your doctor if straight Darvon is an option for you. Ruthie A. rlaba51@yahoo.com


Steve, February 24, 2004 - Hi, Thank you to all that helped me with suggestions on insurance. I am looking into these different options, but a recent turn of events has put me back here at the hospital. I am being listed for a new heart this week, so please keep me in your prayers. Due to my young age (21), size, and blood type they say maybe not more than 3 to 6 months waiting. Thank you again for any prayers, Steve. hydrocurrent@msn.com


Tom, February 24, 2004 - Hi, Texas Heart Institute has had success on some pilot runs as reported at http://www.tmc.edu/thi/stemart1.html. How soon might this kind of treatment be available? Any experiences? Tom. create@ntplx.net


Jon's February 24 reply to Tom's February 24, 2004 - Hi Tom, I only know what I have read. You can find several articles about stem cell therapy at the CHF Surgery Page. At least now trials using this as a stand-alone therapy are underway so we can discover how well it really works. Previous trials combined it with bypass surgery so no one knew if the stem cells or the surgery caused the improvements seen. The main problem so far is that treated patients have a tendency to develop chronic arrhythmias, especially tachycardia (fast heart rate). Some have required pacemaker/ICDs after stem cell therapy for this. I have still not seen any large phase 3 trials begun, though.
     To avoid possible confusion, please note that this therapy used adult stem cells from a patient's own body, not embryonic stem cells or cells donated from another adult. This eliminates all kinds of problems, ethical and physical. It also seems that in heart-related therapies so far, adult stem cells actually work very well. Jon.


Sandy's February 24 reply to Carolyn's February 22, 2004 - Hi, Most narcotic analgesics (all that I can think of) are available without Tylenol, aspirin, or ibuprofen. For instance, with Tylenol number 3, you can get plain codeine, the same with Percocet and Lortab. You can get plain oxycodone or hydrocodone. Check with your pharmacy first and see what they have in stock since it is unusual to have these drugs ordered without the Tylenol, aspirin or ibuprofen. Sandy. sandy4014@aol.com
 
Jon's note: I'm glad people spoke up. I have never seen these drugs without the added components, which is one reason I take Ultram!


Vee, February 24, 2004 - Hi Jon, Is it now approved (or of proven benefit) to take both an ACE inhibitor together with an ARB? I seem to remember seeing something about it on this site. As I recall, I couldn't pull up the link at that time. Thanks! imagine_@earthlink.net


Jon's February 24 reply to Vee's February 24, 2004 - Hi Vee, Taking both an ARB and an ACE inhibitor is not recommended in the official treatment guidelines and ACE inhibitors are still considered the "front line" drug of choice. However, it is now known from trial results that the combination may work well for CHFers who don't get good enough results from an ACE inhibitor, or who see reduced effectiveness with long-term use of one. So adding an ARB is now considered "okay." Does that cover what you wanted to know? I updated the ARB section to hopefully make this a little clearer. :-) Jon.


Lee R, February 24, 2004 - Hi Jon and Gang, I'm still kicking and wanted to say Hi, thanks for always being here, and raise a question. When is the best time for mitral valve repair? My doctor is watching closely with an echo every 6 months. I seem to remember reading, Jon, that you mentioned waiting until it is a 4+ is not a good idea. I'm between a 2 and 3+ at this time with EF of approximately 40%, up from 29%).
     I also have a different opinion from 2 respected cardiologists - one to get a repair, the other says "Don't bother." Maybe I need a third opinion from a valve surgeon from a major teaching hospital. I am near New York. Thanks for any and all thoughts. Bestest to all, Lee. Leezie07403@yahoo.com


Jon's February 24 reply to Lee R's February 24, 2004 - Hi Lee, I see 2 things to consider. First, would your EF and your CHF be a lot better without all that backwash occuring? The odds are that both would improve with a successful surgery. Second, waiting for the valve to get a lot worse gives your heart more time to weaken from its continued improper functioning. Valve dysfunction is a cause of heart failure in itself, so you know the longer you have a faulty valve, the more likely your CHF will either plateau or get worse, rather than improving further. That makes surgery down the road possibly a lot riskier.
     Of course, CHF can cause valve dysfunction as well. In that case though, aggressive meds therapy usually greatly improves valve function as reverse remodeling takes place from ACE inhibitor and beta-blocker use. It does not sound like this is the case with your, Lee. However, I am just guessing so this is just my 2¢ worth. I'd get another opinion. Jon.


Carolyn Knight's February 24 reply to Ruthie A's February 23, 2004 - Hi my dear friend, I will do just that. Boy, every time you get past one finish line there seems to be another. Press on I will till the race is done. Love to you and the time you took to pass me the information. Your heart friend Carolyn. nannahealed11@knology.net


Lisa, February 25, 2004 - Hello, I am writing a paper for class on congestive heart failure. Part of the requirement is that I talk with someone who has the condition to get an idea of how his life has been impacted. Specifically, I have to include how a person's life roles (parenting, job, etc.) and physical abilities to carry out every day activities have been impacted. Would anyone be interested in sharing your experiences with me? This was a topic I was interested in, so I would love to learn more about it. Your name or e-mail will not be revealed. I'll use a fake name in my paper. I hope to hear from someone soon. I have to write my paper this week. Please e-mail me. Thanks! Lisa. lflythe@med.unc.edu


June, February 26, 2004 - Hi everyone, I have cardiomyopathy, just diagnosed last year. I am having a hard time with doing too much, then I'm exhausted the next few days. I need to know how long I should exercise to begin with, and for how many days a week. Last week, I did cardio 30 minutes 5 days, and was tired. How do I know if I need to rest, or just being lazy? Thanks. chavisj@tampabay.rr.com


Vince, February 26, 2004 - Hi, I'm new, age 46 and diagnosed with CHF 3 weeks ago with an EF of 25%. I'm taking Coreg at 12.5 mg, Lanoxin at 0.125 mg, Altace at 5mg and amiodarone at 400 mg, with no diuretic. I have no blockages but I had arrhythmia which was shocked into place. My EKG looks "great." My cardiologist says I should be normal in 3 months. Is this realistic? I got CHF from viral bronchitis in December.
     I am troubled by the lack of diuretic. I asked my cadiologist if I needed one and he sais no. I have hypertension and took atenolol with 12.5 mg of hydrochlorothiazide. My hypertension is normal with all these other meds.
     Yesterday, I caught a cold and gained 5 pounds overnight. Is a diuretic warranted? I feel that maybe my lungs are filling up again. Sorry I don't know all the terms and thanks for your thoughts. vcesarani@aol.com


Jon's February 26 reply to Vince's February 26, 2004 - Hi Vince, Diuretics are used strictly to control symptoms so no symptoms (swelling, weight gain), no diuretics. It sounds to me like you should talk to your CHF doctor about having some loop diuretics on hand (with Rx potassium) to take - but only when you see 2 lbs or more of weight gain in a 24 hour period. Give him a call and see what he says. Jon.


Kate's February 26 reply to June's February 26, 2004 - Hi, In order to establish a comfort level for yourself, and if you can afford it, I'd ask your cardiologist to enroll you in a cardiac rehab program. They will monitor you and teach you what you can and cannot do. Once you get a good idea of what is appropriate, you can switch to home exercise if you prefer. Kate. tothymecottage@frontiernet.net


Kim, February 26, 2004 - Hi, I was diagnosed with viral cardiomyopathy and CHF in late October. I have a pacemaker from 1/2001 for syncope and arrhythmia. I have been improving. My EF was 20 and my latest echo was 35 - 40%. I saw my doc today. I have been having problems with fluid and just feeling horrible, and my dry cough is back but with no crackles in my lungs. I am short of breath. He stopped my Coreg. I have low blood pressure and he said it might help that. I take Zestril, Aldactone, potassium, Lasix, and Coumadin. My sodium intake averages 1000 mg per day and I don't drink more than 2 liters per day.
     Does anyone have any suggestions? Also, my INR seems to go all over the place, really low one week and high the next. I know about veggies, but that's any every day thing. Does this bother anyone else? Thanks. kwilczewski@aol.com


Evelyn, February 26, 2004 - Hi All, I thought I would let everyone know what's been going on. I had a MUGA and a BNP test done yesterday. My CHF doc said it was a great test and more accurate, and after reading the info Jon has supplied (thanks, Jon) I'm hoping for a more of a grasp on where I'm at with this disease. My echo showed an EF of around 17%. I've been on Coreg since September. Does anyone know how long it takes the results to come back? My next appointment isn't till April 28th, which I thought was an awful long time. I hope everyone is having a good day. Take care, Ev. eveysue@hotmail.com


Dan S' February 26 reply to Vince's February 26, 2004 - Hi Vince, At 3 weeks since diagnosis you are still in a critical stage of your treatment. Take all weight gains very seriously and call your doctor immediately even if he puts you on diuretics. A weight gain with or without diuretics is very serious. If you feel like your lungs are filling up that tells me you are having trouble breathing. Five pounds is way too much and no joke. Your weight gain may be the first sign of a setback that you would notice, so keep a very close eye on your weight. Weigh yourself every morning before breakfast. cavalier_1@msn.com


Dan S' February 26 reply to June's February 26, 2004 - Hi June, I would listen to my body. If your body says it's tired, listen - bodies rarely say lazy. Your mind may say lazy but bodies feel fatigued and tired. If you feel these things, listen. Cut back to about 3 times a week for 30 minutes, or 15 minutes every other day. cavalier_1@msn.com


Eileen, February 26, 2004 - Hi, My husband was diagnosed 3 years ago and told to put his name on a transplant list. His EF was in single digits. He was put on Coreg, Zestril, spironolactone and Lasix as needed. He is now at an EF of 50% and works a full day, exercises 4 days per week and is living a good quality of life. He was in a-fib 2 years ago, was converted and has now had 2 episodes of a-fib within the last 4 months. Both times he adjusted himself within the day. Both times he was on the path of increasing his Coreg from 25mg to 50mg per day. Now he is worried that he will revert out of sinus rhythm. He is going to see his cardiologist but has anyone else had this experience? Thanks and take care. esjprs@aol.com


Tom K, February 26, 2004 - Hi, I ran across this site looking for all the info on CHF that I could find on the Internet. All the info I need is right here. What a wonderful place it is - all the things I have I thought I was the only one who had these feelings, aches, pains, tiredness, lower leg and foot pain. Can anybody tell me about the lower leg and foot pain?
     I was hospitalized last October when I found out that I have CHF, along with blocked arteries. I am on 25mg Coreg twice a day, 10mg Lasix, 25mg hydralazine 3 times a day, 60mg isosorbide mononitrate, aspirin, and 420mg magnesium oxide.
     I applied for Social Security Disability and got a lawyer like this site suggests. I'll see what happens. I have been riding an exercise gike for 30 miniutes a day. Does anyone have any other suggestions about exercising, besides bicycling and walking? Thank goodness for the VA and this wonderful site. God bless you. Tom K. KensRodShop37@aol.com
 
Jon's note: Are you intolerant or allergic to ACE inhibitors?


Jacky's February 27 reply to Kim's February 26, 2004 - Hi, Regarding the cough, Zestril gave me a cough bad enough that the doc agreed to me stopping the med. He replaced it with an ARB (Diovan) and I have no cough with that. jackymwb@earthlink.net


Myrtle, February 27, 2004 - Hi, I found an article about salt substitues and thought I would pass it on. Using equal parts of Morton Lite Salt and the salt-free Mrs. Dash, (original blend) along with a dash of Magic Seasoning. Each quarter teaspoon has less than 145 milligrams of sodium. It is not salt free but for those of us who need a little help. You might try this. omieof3@yahoo.com
 
Jon's note: Try to keep potassium chloride intake consistent day to day so your electrolytes stay balanced  ;-)


Sheryl C's February 27 reply to Kim's February 26, 2004 - Hi, Zestril might be the culprit for your dry cough. If the cough keeps you awake at night, you can switch to an ARB. Why did he take you off Coreg? Unless you are symptomatic with your low blood pressure, like passing out or falling, you should try and wait it out until your blood pressure goes back up. It should after awhile. He can decrease the dose until your body adjusts. Coreg is an important drug for us CHFers.
     You didn't say what dose your Lasix is. Perhaps you need a higher dose. If this doctor won't listen to you or you don't like his answers, switch to a different one. CHF is a complicated disease and not all docs are knowledgeable enough to treat it correctly.
     Are you short of breath all the time or just when you do normal things or after a lot of physical activity? Good luck, Sheryl C. cvprehab@hotmail.com


Tom K's February 27 reply to Jon's February 26, 2004 - Hi Jon, Yes, I am intolerant to ACE inhibitors, according to my doctors. After taking weekly blood tests, I believe it made my potassium go up. I wish I could take them. Tom K. KensRodShop37@aol.com


Evelyn's February 27 reply to Val's February 18, 2004 - Hi, I'm sorry to hear of your bad day, Val. I truly hope today is a good one. Take care, Ev. eveysue@hotmail.com


Jack D's February 27 reply to Myrtle C's February 27, 2004 - Hi, This is not a salt substitute but it works well instead of salt on everything except beef. It doesn't go well with beef. It's called citric acid crystals. You may find it in your grocery store in the Kosher section labeled as Sour Salt. It's not salt. It contains no salt. It contains no potassium. It is pure citric acid crystals. You may also be able to find it in bulk at natural food stores and health food stores. It is also available online in several places. I buy it 5 pounds at a time but 5 pounds last so long that I have to use Google to find a source every time. maddjak@hotmail.com


Lane's February 27 reply to Evelyn's February 26, 2004 - Hi, I saw your post about how long it takes for your EF to improve. If what I read is correct, we're all different. In my case, I had a heart cath in June which showed my EF to be 15%. The first part of December, a test revealed 30 to 35%. I just wanted to let you know that there are many factors which add to chances for improvement. Maintaining a low sodium intake, reasonable exercise, adequate rest and taking your medication timely. The rest and exercise have been my downfalls. Even more important is to stay proactive in your treatment. I have surprised my docs with the research on meds and diagnoses, and intend to keep it that way. fastlanedelivery@flash.net


Lisa F, February 27, 2004 - Hi, I have what I need for my paper. I'd like to thank everyone that responded by email. I appreciate your generosity in sharing your personal experiences with CHF. It was not only an asset to my paper, but it helped me learn about an all too common condition that impacts the lives of many. I wish everyone the best, and thanks again! Take care, Lisa. lflythe@med.unc.edu


Evelyn, February 27, 2004 - Hi, Now I've read before where someone posted their BNP results and because of not knowing what it is measured with, you all couldn't help. Because of what the nurse told me afterward, I thought I would go ahead and ask anyway. First, she said the result was an 8 and she said she didn't know what measurement was used but she said it means that I'm not in CHF.
     Okay great, but this brings up a whole other question for me. Does this mean I'm no longer considered a CHF patient or am I always gonna be one, and does this changed me back to class 2? Does this mean I'm well compensated? Sorry to bring up all the questions but oh how the mind wanders. Take care and God bless, Ev. eveysue@hotmail.com


Evelyn's February 28 reply to Lane's February 28, 2004 - Hi, I'm sorry I didn't explain my question right. Because of just having the test done and the long time period the next appointment was I was wondering how long it took to get the results back on my test. I will try to read my own posts before I post them and make sure they make sense - it must have something to do with how fast my mind is and how slow my typing speed is. Take care and thanks for replying. Ev. eveysue@hotmail.com


Ernest Du Sablon's February 28 reply to Susan L's February 18, 2004 - Hi Susan, In response to your question about EECP, I am currently undergoing EECP. After less than 2 weeks I no longer have angina. I walk 3 miles every day except Sunday, which is a day of church, thanksgiving, and rest. I was told 8 years ago that I needed a heart transplant and I am still on a transplant list. However, with the Dr. Dean Ornish diet and walking 3 miles 6 days a week, I have kept myself away from transplant. I have been doing this for 8 years.
     My weight dropped way down with this diet, which my cardiologist approved. He is a CHF doctor. I also did EECP six years ago. I am a firm believer in this procedure, which helped me then and is helping me now. I pray that this procedure will help many more as it has helped me. Ernest. frenchyjr@att.net


Sandy, February 28, 2004 - Hi, I had someone tell me today about a friend having a window put in. Some way it causes your fluids to drain in your stomach. Has anyone heard of it? Also, what is a MUGA test? shallacy@mo-net.com


Ernest Du Sablon, February 28, 2004 - Hi everyone, I read every day and do not post, I guess I am a skulker. I do believe one thing: I believe in doing everything that I can do. I was an avid outdoorsman. I have learned to cope with my CHF and am still an avid outdoorsman within my limitations. I can no longer go hunting and fishing alone, I must have help, but I still go. I enjoy shooting black powder rifles and pistols, which I do frequently as it does not require much physical effort. I hunt small game with friends and I deer hunt with friends. I guess with friends and family you can do anything. Oh, I must not forget without our Lord Jesus I would not be able to do anything. May the love of of God embrace you all. frenchyjr@att.net


Allen, February 28, 2004 - Hi all, I am Wanda's husband. She has, as you know, an ICD/pacemaker and so far, no problems. She went the other day and got it checked, and so far her heart is doing all the work itself. :-) We are so very happy and feel blessed. She does still have back problems and is going to see what needs to be done or what can be done for it. She and I will be sending some photos for her bio since we just got new baby goats again Wednesday. We got 2 baby girl goats; last Friday was twin baby boys. :-) allens_mine@hotmail.com


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

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