The paperwork never ends The Archives
October 1-15, 2001 Archive Index CHFpatients.com

Tracey C's 10-1 reply to Herbert's 9-28     why avoid naps?
 
Cindy 10-1     new here - have questions
 
Jon's 10-1 reply to Cindy's 10-1     a start, I hope others reply also
 
Karen P 10-1     great loss, but thank you
 
Brandy 10-1     edema without weight gain
 
Jeanette W's 10-2 reply to Kim Greene's 9-29     another opinion would be good idea
 
Herbert's 10-2 reply to Tracey C's 10-1     short naps help
 
Herbert's 10-2 reply to Jon's 10-1     counseling helped me after diagnosis
 
Pat M's 10-3 reply to Cindy's 10-1     coping with CHF
 
Jon 10-3     will be gone a few days
 
Jon 10-8     back, but behind, of course
 
Jon 10-8     The Archives may be down
 
Vince 10-8     do CHF meds affect fertility?
 
Jerry Davis 10-8     seek IV drug, VA coverage information
 
Blake 10-8     seek others taking Cellcept
 
Krista L 10-8     had a heart transplant & am doing well
 
Tracey C 10-8     question about aching calves
 
Erceal 10-8     background & several questions
 
Ginger's 10-8 reply to Brandy's 10-1     vein problem experience
 
Naomi 10-8     nitro brand name question
 
Bill D's 10-8 reply to Naomi's 10-8     NitroQuick versus NitroStat
 
Christine 10-8     seek a more specific recipe site, please
 
Larry's 10-8 reply to Naomi's 10-8     NitroQuick versus NitroStat
 
Ruthie A's 10-9 reply to Christine's 10-8     diabetic & CHF recipe resources
 
Loretta D 10-9     seek Coreg side effects info
 
Larry's 10-9 reply to Christine's 10-8     cooking & recipe resources
 
Larry's 10-9 reply to Erceal's 10-8     Coreg dose & Disability
 
Rick 10-9     seek info on alcohol injection for HCM
 
Billie Jo's 10-9 reply to Cindy's 10-1     coping with CHF
 
Ginger's 10-9 reply to Tracey's 10-8     about muscle aches
 
Billie Jo 10-10     going off meds questions
 
Jon's 10-10 reply to Billie Jo's 10-10     some thoughts, especially on finding docs
 
Jack D 10-10     some thoughts on doctors
 
Rick J 10-10     blood pressure & tranquilizers
 
Jeanette W's 10-10 reply to Loretta's 10-9     Coreg side effects experience
 
Erceal's 10-10 reply to Loretta's 10-9     Coreg side effects
 
Jon 10-10     The Archives
 
Erceal's 10-10 reply to Larry's 10-8     SSD approval & more
 
Rick J's 10-11 reply to Jon's 10-10     tranquilizers and blood pressure
 
Jon's 10-11 reply to Rick J's 10-11     tranquilizers and blood pressure
 
Valerie 10-11     knowledge is critical
 
Mary A 10-11     Disability process takes too long!
 
Sally's 10-12 reply to Mary A's 10-11     the Disability process
 
Fred D's 10-12 reply to Mary A's 10-11     the Disability process
 
Jan S' 10-12 reply to Rick's 10-9     tranquilizers & blood pressure
 
Linda B 10-12     seek Tikosyn (dofetilide) experiences
 
Herbert J 10-12     seek Coreg or Toprol-XL experiences
 
Erceal's 10-12 reply to Mary A's 10-11     the Disability process
 
Pam 10-12     seek post-partum cardiomyopathy experience & answers
 
Jan S' 10-13 reply to Jon's 10-12     job can make a difference
 
Pamela's 10-15 reply to Billie Jo's 10-10     coping with CHF
 
Harriet 10-15     intro
 
Ginger's 10-15 reply to Pam's 10-12     peripartum/postpartum cardiomyopathy resources
 
Jon 10-15     false claims & more


Tracey C's October 1 reply to Herbert's September 28, 2001 - Hi Herbert, I read your post about things to avoid, and I noticed you had long naps listed. I've never heard that before. What is the reason? Take care, Tracey. 2tcollins@home.com


Cindy, October 1, 2001 - Hi everyone, I'm new here. I had an MI 3 years ago and was diagnosed via cath during my stent placement with an EF of 45%. There was hardly any mention of CHF then. Everything was going "pretty good" till one month ago. I suffered a mild MI, very mild when compared to the previous one, and have had another cath done. My EF now at 30%.
     What is really blowing me away here is the way I'm feeling. To say I wake up tired is the biggest understatement of all. This in turn is really starting to drain me mentally and emotionally. See, I can't bear being an "inside" person. I thrive outdoors but now the heat is starting to really make me feel sick (i.e., cold sweats and SOB) and if I don't come in and get cool and rested, I get angina. Is this the same for some of you? Lately when I discuss my many questions with my doc, all answers are prefaced with "Now, you have to remember you had had 2 MIs and you are really young for this." Do any of the females here between the age of 40 to 45 get that type of reaction from your docs?
     Lastly, did any of you just cry and cry for no reason after you were diagnosed? I think that is getting to me the most. Thanks for reading, Cindy. sweetiepeeps@hawaii.rr.com


Jon's October 1 reply to Cindy's October 1, 2001 - Hi Cindy, I certainly hope some of the ladies answer because I can't address female-specific situations. However, I was diagnosed at age 36 and got the same, "Remember that you are very young for this" routine, so that alone may not be for ladies only. ;-)
     As for crying "for no reason" after diagnosis, why do you think you're crying "for no reason?" You've been diagnosed with a major heart attack, been told your heart has "failure" and your doctor isn't exactly forthcoming with how deal with it all. That's reason! <g> Although it looks like a huge chunk of your life is gone forever, I can say from personal experience that it isn't. It will take you quite awhile to come to grips with all this for real, but you will, I think.
     Just don't make the all too common mistake of jumping in and trying to be "normal." You aren't healthy anymore. Then again, you're not a cripple, either! Build up some endurance nice and slow, but steady. Now you have to set longer-term goals and work towards them more steadily, rather than in spurts like most healthy people tend to do.
     It also helps to learn to enjoy the path getting there instead of just saving the enjoyment for once you've arrived. In other words, keep your eye on the ball, not on the goal line. <g> You can still be an "outdoors person." You may have to adjust your idea of enjoying the outdoors somewhat, but that outdoors is a big place and there are lots of ways to enjoy it. Take it easy and know that the enjoyment is still possible, and you'll find it once again.
     Never forget that consistency is critical in getting your body into shape now. You can no longer make up lost exercise days that you took off because you felt too good to waste your energy on exercise. You can't recover from blown diets, blown because you just wanted to eat like you used to for once. The only excuse for lost exercise days now is a bad heart day (as I call them). You have to plan your diet cheats instead of being spontaneous with them, knowing that you will pay for each one to some extent. However, if you are steady in all the lifestyle necessities, the payoff is feeling a lot more "normal" and being able to enjoy many of the things you thought were gone forever.
     So don't despair - education helps. Start here and ask lots of questions along the way. Sorry about being so long-winded. Sometimes I just run on and on, on and off topic. ;-) Jon.


Karen P, October 1, 2001 - Good Morning All, I am simply writing to say thanks for being there for the last 3 years. I lost my husband on the 21st at 61 years. He had severe cardiomyopathy, his kidneys failed, and he went on peritoneal dialysis a year ago. He really was crisis-free (EF about 15%) until he started to get peritonitis a second time and at the same time went into V-tach here at home. Of course, I called an ambulance. I think the v-tach occurred a few more times while he was in the hospital for 3 days. The peritonitis was raging and finally he went into V-fib and passed away.
     But I am writing to thank you Jon, for this wonderful forum. I was an infrequent contributor and my husband wasn't particularly interested in it, but I logged on every single day during those 3 years and learned so very much. It really helped me wrap my brain around what we were dealing with here in this house, and gave me strength through that understanding. From the bottom of my heart I wish you all well. Thank you all again for being there. Fondly, Karen. phillipsk00@cs.com


Brandy, October 1, 2001 - Hello, I have PPCM and a 50% EF. I have been swelling pretty badly around my ankles for the past week or so. I don't even have to be up moving around for the swelling to begin. My calves, ankles and feet ache from the swelling. My edema is only slight, but I am puffy. However, I am not retaining any weight gain at all. Has anyone heard of this? I do not typically swell up often, Brandy. TNBLee@prodigy.net


Jeanette W's September 29 reply to Kim Greene's October 1, 2001 - Hi Kim, I have DCM and I know what you are going through. I was misdiagnosed twice. I couldn't lay flat to sleep and the SOB was unbearable. I agree totally with Jon: Get a second opinion from a distant cardiologist. All the symptoms you are having sound like CHF to me. I am not a doctor but I wouldn't fool around and take the advice of just one doc. It almost cost me my life.
     I have gained weight because of this disease too. Exercise for me is nill because of my BP dropping. If I were in your shoes again, I would be getting to a cardiologist fast! This is your life, not the doc's. Your body is your best one to tell you when something is wrong, not the doc. If you can't breathe, go to the ER. I hope all works out for you. Take care, Jeanette. jeanette841@yahoo.com


Herbert's October 2 reply to Tracey C's October 1, 2001 - Hi, The Short and Sweet of it is that short naps of dozing off for 5 minutes in a comfortable sitting position to crashing for up to an hour have usually done their job for me and allowed me to still get a regular night's sleep when I go to bed. Sometimes I want to sleep more and unfortunately do, but I've found that if I get up on my feet and move around a little, the short nap was enough. This short nap thing (as opposed to long naps) is especially good when I have those "I just gotta crash for a bit" feelings, like just after over-eating, getting stressed out over some little thing, being overcome by the shopping thing, or knowing that I have overdone it. I try to use the short nap as a coping mechanism to rehabilitate myself when my organs are running short of oxygen and I think I need to take a few things off line to give other parts of me the oxygen they need. As you can see, this short nap thing is my own way of handling my daily life and it works for me. Of course, I may be just fooling myself. Anybody with a better idea? I can sure use them. Best to all, Herb. Lajoie@cpros.com


Herbert's October 2 reply to Jon's October 1, 2001 - Hi Jon, That sure was a nice reply you gave there, guy. Right on. May I add that when I was first told about my CHF, I had a hard time with the idea that my physical abilities were history. The CHF doc could see this I guess, for he recommended counseling. After a few weeks I soon found that I needed it. Best to all, Herb. Lajoie@cpros.com


Pat M's October 3 reply to Cindy's October 1, 2001 - Hi Cindy, I just wanted to respond to how you are feeling about finding that your health has changed because of CHF. I am much older than you (61) but I have always been involved with life. I graduated from college at 59 and became a social worker. A few months ago I had to get serious about this CHF thing; it wasn't just a label that I could ignore because of the symptoms I was having. I had pretty well ignored it over the years when the docs would mention it.
     Now since I had to live with it, take meds for it, and make adjustments to my life style. I can tell you, the first few months I was in denial. I would read and reread this site and The Manual, as well as other sites. Slowly I began to see myself in these posts. Many people were in the same boat. They don't realize it but they became my support system until I could deal with it. Many times friends, church members, and others still don't understand my limitations but I understand and my husband and family understand after seeing me go through some of it. It gets better.
     Knowledge about the disease will empower you. Don't be afraid to reach out. We are all here for you! God bless and peace to you, Pat M. pmarble@tellico.com


Jon, October 3, 2001 - Hi everyone, Well, while the message boards are so slow seems like a good time to care of some personal things that require my absence from my site. So I will be back online Monday or Tuesday but until then, there will be no posts or replies to e-mails. I did put up a pair of new desktop wallpapers, for anyone who is interested. Jack, I tried to work a parrot into that freedom wallpaper, but just couldn't manage it. <g> Jon.


Jon, October 8, 2001 - Hi everyone, I'm back. However, it will be a day or so before I begin to get really caught up on anything. My furnace is on the blink and my bathtub faucets have decided to get revenge on us for leaving town for a few days. ;-) Toss in the need to get some low sodium cooking going and so on, and I'll be behind most of the week, but I'll be working on it best I can. Jon.


Jon, October 8, 2001 - Hi everyone, It seems that my geocities site - which contains my heart forum archives - gets more traffic than they allow. I am not sure yet what I will do about this so my archives may be unavailable for awhile, at least sporadically. I can only sink so much money into the site and am already pretty much at that limit but will think it over and examine my options and let you know about The Archives' fate when I have made up my mind. Going out of town tired me out a lot and I have things around here that require fixing so it could take me awhile to get to this one. Jon.


Vince, October 8, 2001 - Hi, I am age 36 and new to this group but have CHF, which happened due to an infection I picked up while abroad. I just wanted to ask if the drugs we take have an effect on starting a family. Thanks, Vince. v.turbutt@ntlworld.com


Jerry Davis, October 8, 2001 - Hi, I just returned home from the hospital, where I lost 30 pounds of fluid on IVs. I am still on IV dobutamine with an at-home care giver. I understand that Merck Medco, which my insurance company GEHA uses, does not have it. Has anyone received this from the VA? It is very expensive, about $100 per day. The Lord will make a way for me. jerrydavisx@hotmail.com


Sharon J, October 8, 2001 - Hi all, I haven't posted in awhile, although I do read regularly. I got a surprise this month. Following a routine breast exam, I found what I knew was a cancer. It was, and I had a lumpectomy and a sentinel node biopsy last week but more on that later. My cardiomyopathy (EF of 25%), internal defibrillator and 100% dependance on a pacemaker made the surgeon turn green. The operating room ended up with at least a dozen specialists present. I had to have my defibrillator turned off during the procedure, but the surgeon felt uncomfortable using the bipolar cautery, so he did it the old-fashioned (cut and tie) way. It took a long time but he was so proud to have used his skills so well.
     The frozen section was negative, but I was told yesterday that it had indeed spread into the nodes; So on the 10th I head in again for all the nodes to be removed - and a mastectomy. I figure my heart isn't going to get any better, so I'd rather remove the chance of cancer recurrance while I'm a "good" surgical risk. Please understand that I'm not asking for pity, I'm actually so full of peace that it amazes everyone, except me.
     My reputation preceeds me at the hospital: They all know the lady with no natural heartbeat is in the hospital! Chemo will be a problem but just to let you know, those of us with serious heart problems can be successfully treated. Peace and health to all. sparkywilliams@att.net


Blake, October 8, 2001 - Hi, I was wondering if there were any transplant patients here who were taking the maximum dose of Cellcept? If there are, please contact me. Blakein85@cs.com


Krista L, October 8, 2001 - Hello everyone, I lingered around here quite often when I had CHF and thought I would give a little update. I am age 26 and am proud to say that I had a heart transplant a little over 8 months ago and am doing wonderfully!
     I was diagnosed with hypertrophic cardiomyopathy and WPW Syndrome when I was 13, had abalations done to control the electrical problems but then developed CHF (EF of 23%) about 2 years ago. My heart just seemed to have a mind of its own, and continually went downhill despite medications of all kinds, a biventricular pacemaker, and rehab. I was in the hospital about a month because I was so unstable before getting the gift of a new heart.
     I could tell the difference the second I woke up - it was incredible. I just wanted to extend my experience to anyone who may require a transplant in the future or anyone who is debating that option. The information that Jon has posted here is excellent, and I highly recommend that you look at that in depth if a transplant is needed. Please feel free to contact me if you have any questions or concerns about getting a heart transplant. Good luck to all, Krista. kristalosey@hotmail.com


Tracey C, October 8, 2001 - Hi, I was wondering if anyone else has aching calves? It seems worse in the morning, but they pretty much ache all day. It's been going on a couple months now. I don't know if it's one of those heart things, or an ACE side effect. Thanks, Tracey. 2tcollins@home.com


Erceal, October 8, 2001 - Hi, I was diagnosed with DCM in 1994 via cath. In September of 2000 I was on my treadmill and lost my ability to get a breath for about 5 seconds. This was very scary and I had noticeable ankle swelling. My internist did a stress test and and echo, which detected slight progression of disease. In February of 2001 I had my internist refer me back to my cardiologist. I started Coreg and now am up to 25 mg BID. I also take 40mg Lasix daily, 2mg Mavik, 5mg Hytrin, and Synthorid. Both my doctors have recommended Disability, and I started the process in late August of this year. My EF got as low as 15% but after 4 months of Coreg it increased to 25% (June of 2001). My LV internal diastolic size is 7.3cm and systolic size is 6.2cm. My left atrium is 5cm. I have a stiff heart and severe mitral regurgitation (+3 mitral and 1+ tricuspid).
     I am currently on maximum medication, I sleep with oxygen, have no stamina, get short of breath on exertion, and have edema. I am going to the Baylor Cardiac Heart Failure Clinic and am well cared for there. I have noted since my Coreg dose increased less energy, faintness, and more pronounced angina. If I get near salt I gain as much as 5 pounds in a 24 hour period. Currently my heart function is stable. I visit the HF clinic every 4 weeks now, versus every 2 to 3 weeks when my Coreg dosage was increasing. Here are my questions:
     1. My angina has been increasing (not severe, but very tight) although I have no blockages in my ateries. My cardiologist has said it is not my heart and to discuss it with my internist. Has anyone experienced this, or do you have any thoughts regarding it not being my heart? I did have my ribs broken when I was a child and thought maybe the enlarged heart could cause it. Also I am wondering if I have swelling within my heart lining. Could it be stress induced, with my lowered immune system and capability to deal with stress?
     2. If I smell salt I swell up and get a flu-like feeling. Could this be the medication or the progression of disease, or both? I thought Coreg made you feel better.
     3. Those of you who have been through, or are going through work insurance disability and SSD, could you comment on what to expect? Any and all input will be greatly appreciated. Any questions of me regarding what I am experiencing that may help any of you, please ask. edoty1@coserv.net


Ginger's October 8 reply to Brandy's October 1, 2001 - Hi Brandy, I have DCM with an EF of somewhere around 40 to 45%. The swelling in your lower legs can be a vein problem. I have it, and just found out about it while they were looking for something else. <lol> It's something you need to bring up with your doctor, though. I would try to explain it more but it's complicated. Veins are different then arteries (my arteries are clear), but whether it's that or fluid or something else you need to talk to your doc. Hope ya feel better. Hugs and prayers, Ginger. angelgin@bellsouth.net


Naomi, October 8, 2001 - Hi, is NitroQuick the same thing as NitroStat? angel65_46992@yahoo.com


Bill D's October 8 reply to Naomi's October 8, 2001 - Hi Naomi, I didn't like NitroQuick. It was slow in dissoving and most times, I'd swallow it! I went back to NitroStat even if it was more expensive, Bill D. billdog11@earthlink.net
 
Jon's note: I'm with Bill 100%! I have my CHF doc not allow substitutions when he writes my NitroStat Rx's just to avoid NitroQuick


Christine, October 8, 2001 - Hello to all, It seems that I have been surfing numerous sites for hours and am just too tired to go on. I am 42 years old and had an interior MI 3 days ago, not to mention I am a long-term diabetic. I want to ask anyone for a web site that has recipes for low fat, low salt and low sugar meals. It looks impossible now and I know I can convert most recipes but I am still a little too tired to start a time consuming project like that. Thanks and God bless. chmackay@aol.com


Larry's October 8 reply to Naomi's October 8, 2001 - Hi, To the best of my knowledge Nitroquick and Nitrostat are both brand names for nitroglycerin. MSN Health ( http://health.msn.com/ ) has a very good drug database that you might want to check out for information on prescription meds. cthornton@lni.net


Ruthie A's October 9 reply to Christine's October 8, 001 - Hi Christine, I understand your problem exactly. I am a newly diagnosed diabetic and am having a hard time with combining CHF and diabetic diets to come up with something besides cardboard chicken. Just the other day I found www.diabetic-recipes.com. They have a whole bunch of diabetic and heart-healthy recipes with a breakdown of sodium, carbs, etc,..., at the end of each recipe. At least that is what I found with the few recipes I looked at. I have not tried any of them yet; I haven't had the time since I found the site. I would imagine that you could reduce or leave out the salt altogether with most of the recipes without changing the flavor that much. Besides, I found that foods without salt taste better than those with salt because you can actually taste and enjoy the food! I hope this helps, Ruthie A. rlaba51@yahoo.com


Loretta D, October 9, 001 - Hi, My cardiologist recently put me on 3.125mg Coreg per day. I am supposed to call him this week and let him know how it's been going and get a prescription probably for a higher dose. What symptoms or changes should I have noticed? I have so many problems I don't know what's related to meds and what is related to other problems. Thanks, Loretta D. lorettad7@home.com


Larry's October 9 reply to Christine's October 8, 2001 - Hi, I have always enjoyed cooking and since I can't do much of anything else I am getting back into it. A great site for recipes is www.cookpoint.com. Have fun cooking, Larry. cthornton@lni.net


Larry's October 9 reply to Erceal's October 8, 2001 - Hi Erceal, I for one can't take much Coreg. I take 6.25mg twice a day. Every time I increased my dose it really knocked me out for a few days. However, it is a great drug for your heart once you get your dose leveled off. As far as SSD, hire a lawyer. Good luck, Larry. cthornton@lni.net


Rick, October 9, 2001 - Hi all, First of all I have to thank Jon for a wonderful site. After reading posts within I see that you are allowing all of us to help one another. Seriously, I do feel a little better. I am 51 years old and have HCM. I have demonstrated symptoms for over 20 years (shortness of breath, fatigue ). During this time I was a high country logger - not a great combination, right?
     I would go to my doctor and tell him of my problems. He would send me to a "specialist" who would examine me and say, "I wish I were in your shape!" This happened many times over the years as I was progessively getting worse. The last "specialist" I saw before I was correctly diagnosed told me I shold see a psychologist and with that I felt resigned that maybe it was in my head. I started to jog and bought a complete weight set. Hmmm, didn't help.
     About 4 years later I had a cold and went to a different doctor because my insurance changed. He was a PCP. He checked me over for the cold and the first thing he said was that I had to see a specialist due to to a heart murmur. They dis an echo and finally I know what has been going on. Boy, would I like to talk to the guy that said I needed a shrink! Anyway, here I am 4 years later, retired, with a pacemaker (2 years ago and yes, it helped me), taking 200mg of Toprol-XL twice a day and waiting for something magic to happen. I am looking for others who have tried the alcohol treatment to hear of their experience. I apologize for the novel and best wishes, Rick! solow123@aol.com


Billie Jo's October 9 reply to Cindy's October 1, 2001 - Hi Cindy, I know exactly how you feel. I was age 29 when diagnosed in December of 1999 with CHF and DCM with an EF of only 10%. I was hardly able to breathe and was swollen up like a giant water balloon. I'm also a very outdoorsy person. I must've cried constantly for months, sinking into a severe pity party. Then I got connected with this site, read here every day and got real gung-ho about recovery. I ate all the right things, walked daily, and a year later my EF rose to 50%. My heart returned to normal size and I have not swelled up again. I don't even "cheat" on foods. I don't know if I just became accustomed to a new life style and physical limitations or if I really can do some of the old things I used to but just try and keep your chin up. Remember life is not over - it just needs a little readjusting, Bille Jo. harleykritter@aol.com


Ginger's October 9 reply to Tracey's October 8, 2001 - Hi Tracy, Do you take a statin drug? If not, read my post to Brandy. It could also be a side effect of a med. Hugs and prayers, Ginger. angelgin@bellsouth.net
 
Jon's note: If you do take a cholesterol-lowering drug, call your doctor


Billie Jo, October 10, 2001 - Hi everyone, I've been gone for awhile but was a daily reader when first diagnosed in December of 1999. I'm back lurking now. Here's a quick update: I was diagnosed in December of 1999 with an EF of 10%, DCM, CHF, and a heart swollen to twice normal size. One year later my EF is 50% and my heart is back to normal size. Now at age 31 I have stayed the same since with no fluctuation up or down.
     Not quite a year into my disease my cardiologist moved to New York, and I got a replacement, supposedly "the best." He has credentials up one side and down the other and my family doctor says I'm in good hands with him, as does my father and everyone else. I admit I am doing well but he really has done nothing in treatment of my disease. He has never even mentioned low sodium diet, exercise, life style modification, and he didn't change my medication at all from what my previuos cardiologist prescribed. He only sees me twice a year now, and after my next check-up in November is putting me on once a year visit schedule. I had to ask him about low sodium and exercise.
     He was very nonchalant and said just to keep it reasonable at 2000 to 2500mg sodium per day. My first cardiologist had me on 1200 mg daily or less. He also said to try to stay "active." I am much better than what I was but I just wonder if with a more aggressive approach, could I be even better!? I also wanted to wean off medication and he said no; Basically, if it ain't broke, don't fix it. My first cardiologist played a very active role, playing around with dosages and said we'd take them up-up-up, then gradually come down-down-down.
     I am just wondering how other people who have had DCM and CHF for a few years or so are doing? Is is normal to be only checked up on once a year and stalemate with meds? I'd really like to wean off them but my current cardiologist says it never works and I'll just get worse again if I reduce them. I have had a dry cough from them since the beginning and my cardiologist said it was from the Zestril and an aspirin would take care of the cough but it hasn't worked. Is there anyone out there who's gotten off or greatly reduced thier medication successfully? If my heart's gotten so much better, to a 50% EF which I've been told is considered low normal, can't it do the job on its own now or is it just the meds doing the heart's work for it?
     I'm taking 40 mEq potassium, 25mg Coreg, 15mg Zestril, 80mg furesomide, 0.125mg digoxin (Lanoxin), 200mg CoQ10 and 500mg L-Carnitine. I would appreciate any feed back. I'm not knocking my doc but am curious about how other long-timers are doing. Is it normal for them to take a more laid-back approach after you've had it for awhile? Or should I be searching for a new doctor? Thanks, Billie Jo. harleykritter@aol.com


Jon's October 10 reply to Billie Jo's October 10, 2001 - Hi everyone, I hear this a lot - about a recommended cardiologist being "the best" and having "great" credentials. Take my word for it or not, this means nothing, absolutely nothing. My CHF doc has some credentials but is not a nationally known specialist. Yet, I will put him up against any CHF doc anywhere as far as diagnositic, prognostic and medical skills; sound judgment and experience; and concern for the individual patient. He is simply a great doctor without great credentials.
     My advice is to take the extra time and make the extra effort to visit multiple docs and interview each one using a written list of questions, taking notes, and bringing up anything and everything of concern to you at that first interview. You can learn much of what you need to know about him by:

  1. how he reacts to you whipping out a written list and taking notes on his replies
  2. how much time he takes with you on this visit - whether he is in a hurry to gloss over certain topics and move on or whether he will let you fully explain and discuss whatever you wish at length
  3. whether he or his nurse thoroughly documents your current meds - in writing
  4. whether he is open to treatment information you found online, and whether he is online himself
  5. whether he clearly recalls something you said early in the conversation later in the conversation. Use this deliberately to see if he is really listening or just looks like he is listening. This is why you must take notes and work from a written list
  6. and of course, whether he is up to speed on current tests, treatments and theory on all things pertaining to heart failure
  7. another good test is to print out one of my more technical pages like the CHF page and ask him to explain specific parts of it to you in plain English. Is he willing to do it? Can he do it? How comfortable is he doing it?

Of course, it may be that your first cardiologist's treatment was so good that your current therapy doesn't need adjustment, in which case changing it would be foolish. Also, if you are stable and more than 1 to 2 years into living with CHF, a once yearly CHF doctor visit is reasonable. However, he should be discussing life style modification at length with you and his sodium limit is definitely a bit high. Honestly, though, if it ain't broke, you really shouldn't be trying to fix it. Why would you want to change something that seems to be working incredibly well? (I mean, you have really improved!)
     Dr. Silver, my own CHF doc, and Gino all concur on one thing - a CHF patient should stay on a beta-blocker and ACE inhibitor for life, regardless of improvement. This has been proven over and over right here at Jon's Place: When you go off meds, 8 out of 10 times your CHF recurs, sometimes with a vengeance. Your doc is right. With that said, tapering off your diuretic is not only okay but wise, to see how you do. That may also eliminate the Rx potassium. CoQ10 is valuable only if you have a deficiency, which you may no longer have, although if you take a cholesterol-lowering drug, I would say to stay on it as well. Other than that, I plan on staying on my meds for life regardless of further improvement. I have had CHF for almost 7 years and have slowly gone from an EF of 13% to 40%.
     CHF meds don't do the heart's work for it. They make changes in hormonal system effects (usually) that allow your heart to do its own job a lot more easily. Please read up on these drugs here and elswhere so you know just how and why they do what they do. Until you understand the basics of what each drug actually does and how, you aren't in a very good position to just say you want to stop this one or that one, you know?
     I just think that very few Americans have the intestinal fortitude to really go out and find a doctor who is right for them. This, despite the fact that we put our very lives into these people's hands, and still we don't make any serious effort to be sure we have a skilled doctor with good listening skills. It's just plain nuts and while I understand the reluctance to discuss medical things at length with someone so much more knowledgeable than we are, it is a must!
     I finally found a PCP for myself, but it took over a year, with lots of phone conversations and interviews. I knew within 5 minutes I had my guy, though. You really can tell, and telling who is good from who is not gets easier the more doctors you have discussed things with - that's an added benefit to all those interviews. Just my 2¢ worth. Jon.


Jack D, October 10, 2001 - Hi, For those of you who have had bad experiences with doctors (even though I know that is rare), try this The next time you get a flat tire slice off a tiny piece of it with a razor blade, take it in and the mechanic can look at it under a microscope to see if he can determine what is wrong with it. Now, doesn't the medical profession remind you of 10 blind men describing an elephant? Too bad the only doctor who really knows anything, the pathologist, is the only one that never gets to see the entire patient. maddjak@hotmail.com


Rick J, October 10, 2001 - Hi, I was diagnosed with CHF in December of 2000 with an EF of 15%. I have been on 100mg a day of Coreg since January of 2000 and after a MUGA on September 28, was told my EF is now at 36%. The doc has allowed me to return to work as a laborer to give it a try. Now that I am back to work my BP is running higher. I check it at work after sitting 10 minutes and get readings around 185/96 and 160s/80s. My blood pressure is lower at home. My wife thinks I need a tranquilizer, not more BP meds. I also take 20mg a day Prinivil. Does anyone here take a tranquilizer to keep their BP down? Thanks. rnbjaxs@aol.com
 
Jon's note: I don't follow her reasoning - why a a tranquilizer?


Jeanette W's October 10 reply to Loretta's October 9, 2001 - Hi Loretta, In answer to your question about side effects from Coreg, usual side effects that are temporary include fatigue, SOB, headache, insomnia, and a heaviness when breathing. They should calm down or go away in a couple of weeks. I am taking 12.5mg twice a day and have been on Coreg for over 3 years. The only time I get these symptoms is when my cardiologist raises my dose. Otherwise the only side effect I have is short-term memory loss. I have to write everything down or I will forget it. My long-term memory is great but if you told me something and asked for it a time later, I'd have forgotton it! I hope this helps. Also check out the drugs on the drug page here at Jon's Place. It will tell you about it too. Take care and God bless, Jeanette W. jeanette841@yahoo.com
 
Jon's note: See this page, this page, this page, this page, this page, and this page for starters


Erceal's October 10 reply to Loretta's October 9, 2001 - Hi Lorretta, You will have to raise dose in steps over time with this medicine. It varies with the individual. I was monitored by a HF nurse and now in a CHF clinic. They do an EKG, electrolyte and other tests when raising my dose. Coreg will slow down your heart and help it pump better. Lots of good things are said about it. I would feel blah, like a mild case of flu for a few days as I adjusted to each new dose. Also, you could get fainting. Do not get up too quickly. My HF doctor had to lower my Mavik from 4 to 2mg due to my BP and heart rate being too low.
     We thought it was more important to maximize Coreg then Mavik. Read all you can on this site and ask your doctor if he has the video Smith Kline provides on Coreg. There are sites on the web where you can get a lot - sometimes too much - information, but it is out there. Do a search on Coreg or carvedilol. What makes you feel better is that the Coreg helps the heart to function and you will be getting more O2 and blood supply to the body. In some cases it can shrink an enlarged heart and increase EF significantly. In my case I went from 15 to 25% EF and hope to sustain it. edoty1@coserv.net


Jon, October 10, 2001 - Hi everyone, I have options for maintaining The Archives (old posts from this forum) that are free but they are all labor intensive. I am just letting it go. The Archives will be offline whenever geo decides they have too much traffic for as long as they think so.
     I just don't have the energy to make it happen and I don't have anymore money to sink into this site on top of current host/connection fees, extra phone line, and so on. I have recipes from a month ago that I haven't touched, a heat transplant experience yet to publish, news bulletins that may already be too old to bother with anymore they have sat untouched so long and so I am just letting it go. It's no big deal but I want to keep you updated on why I do what I do - it can be hard to figure out sometimes, I know. <g> Jon.


Erceal's October 10 reply to Larry's October 8, 2001 - Hi, After a very bad start and so great a time since late August, I got excellent news today from SSA. I have been approved for Disability. I prayed hard and asked the Lord to take up the burdens I could not deal with, one of which was financial and one of which was my angina. He responded to both in the last 24 hours. He is still carrying me with my overall health condition and told me not to worry but just to trust in Him, and in my health care providers, who are excellent. If I can help anyone or explain anything regarding SSD or my angina, I'd say that 3 things to avoid are salt, more than 2 liters of fluid daily, and anxiety or fretting. edoty1@coserv.net


Rick J's October 11 reply to Jon's October 10, 2001 - Hi Jon, She thinks a tranquilizer might settle me down; thinks my high BP is caused by me getting all wound up. Then again, maybe I misunderstood her - maybe she thinks she needs the tranquilizer to put up with me. rnbjaxs@aol.com


Jon's October 11 reply to Rick J's October 11, 2001 - Hi Rick, If case A, I doubt it will do any good, but case B might be a winner! <g> Jon.


Valerie, October 11, 2001 - Hi, I was diagnosed with cardiomypathy and CHF in March of 2001 with an EF of 25%. After many tests and another echo yesterday, my EF is back to 50% and my cardiologist wanted to take me off the 5mg of Altace and 100mg of Toprol-XL. He asked me what I wanted to do. I said stay on the meds!
     Jon, thank you for this web site; It has given me the courage to speak to my doctor and speak up. Before, I would have just let him take me off the meds without questioning him. Once I gave him my answer, we talked more about where I was getting my info and he was impressed by the info I knew! Thank you again and God bless! Valerie. valmac@triton.net
 
Jon's note: Congratulations on speaking up with your doctor - I realize that doing so can be very difficult


Mary A, October 11, 2001 - Hi, This whole disability process is soooo frustrating! I had my hearing in June and have heard nothing, not a word, since. Does this long delay mean that the judge is seriously considering all the angles of my case? Does it mean he's so swamped with other cases that I'm on the back burner? Or does he want to delay giving me bad news? I think 4 months is a ridiculously long time to wait for a determination. kactus@voyager.net
 
Jon's note: Chin up - I think I waited 14 months


Sally's October 12 reply to Mary A's October 11, 2001 - Hi Mary, Just be patient. I hope you have been working with a lawyer from the start. I talked to a few people before I applied for my SSD and was strongly advised to use a lawyer from the very beginning. I looked in a web site under Social Security Disability and there is an organization which recommends lawyers in all areas of the United States that are familiar with all the rules involved in filing the paperwork. My lawyer, to whom I was referred through this organization was just wonderful. I applied for my SSD at the end of March, 2001, and it was approved the end of July, 2001. I guess I am one of the really lucky ones to have gotten it that quickly. I did have to go to see 2 of their doctors for an evaluation. The paperwork alone is mind boggling if you have to do it by yourself. If you phrase an answer wrong it could mean the difference between getting approved or denied. I would recommend that everyone use a lawyer. They get 25% of the retroactive check. In my opinion, that is cheap. If you are really physically unwell and in my case also very depressed, your mind just doesn't work as well as you would like. Good luck to everyone who applies. God bless all. S_Meyers44@msn.com


Fred D's October 12 reply to Mary A's October 11, 2001 - Hi Mary, I'm sorry to hear about your long wait for an answer from SSD. I do know that once they honor your claim, they will pay you any back payment owed. There is a 6 month waiting period before any benefits begin. Have you been denied before? If so, I would suggest getting an attorney that specialies in SSD claims. You also need a letter from your physician stating that you are disabled, when you became disabled, and that not only can you not do what you were doing before, you cannot do any type of meaningful work. Good luck. deal@midusa.net


Jan S' October 12 reply to Rick's October 9, 2001 - Hi, Xanax, an anti-anxiety medication, has helped me with keeping or bringing my blood pressure down when I'm faced with situations that have stressed me or I know a situation will stress me. I take 10mg of lotensin and 180mg cardizem daily and my blood pressure stays low unless I'm stressed and then wham, up it goes. It works for me and has for several years. If I know I'm going to be in a stressful situation I take a Xanax before the event. Yesterday I didn't know and went from a blood pressure of 101/52 at morning exercise to 170/90 later in the day when I was stressed by an unexpected stressful event. I side with the wife. Try it a few times. It might work for you too. Geschuppja@aol.com
 
Jon's note: I don't mean to rain on anyone's parade, but for a laboror, a tranquilizer during the workday could be dangerous


Linda B, October 12, 2001 - Hello, I have been reading this site faithfully since being diagnosed with CHF January, 2001. I was just in for a quarterly check-up and was told my EF is still 15% and the doc wants me to check into the hospital for three days to start on Tikosyn (dofetilide) for arrhythmia. I have read your info on this Jon, and would appreciate a response if any of you are on this, or could shed some light on this drug. lbaker@dacc.org
 
Jon's note: To everyone, don't forget that much heart info is in my text files available for download rather than on my pages. See this page and don't forget the 2 zip files at the page's end


Herbert J, October 12, 2001 - Hi, I would like to talk with anyone who has experience with coreg or metoprolol (Toprol-XL). I am not on a beta-blocker and my cardiologist wants to put me on one. I am doing so well I did not want to disrupt anything. hjoyner@carolina.rr.com


Erceal's October 12 reply to Mary A's October 11, 2001 - Hi Mary, I have been through the process and it can be a drag. Most of my issues and anxiety is trying to figure out and get Hartford Insurance what they need for my short-term disability which will go to long-term disability. I am in the process of engaging a lawyer to do that for me. I just emotionally cannot afford the effort and aggravation. It sets you back and counteracts what the medicine is suppose to be doing for us.
     However, as you may see in my 10/9 post, I was approved for SSD; I think in record time. I found out that there's a matrix they may use to grade disability that your age has a bearing on. The older one is, the less severe is the grading for disability approval. So, if you are under 50 that could be an issue. There are sites you can go to and read all the very complicated legislative and red tape language. I would recommend a lawyer for that. If I could do it, I would be working. To summarize, it may depend on how you answer questions and on how old you are. Let me know if you want the link to see the matrices. I found them through SEVERE Net. You can check with Against All Odds and talk directly to an expert too. Both are on Jon's Disability links. I talked to him twice and he was very helpful and can represent you if you choose to use him. I am considering him for coaching. Good luck, Erceal. edoty1@coserv.net


Pam, October 12, 2001 - Hi, My name is Pam and I am new to this site. I was diagnosed with cardiomyopathy in May of 2001. Either a viral infection or postpartum caused it. I am on Coreg, digoxin, and lisinopril. I am still going up on Coreg dose. Next week I will start taking 25mg 2 times a day. I check my weight every day but haven't gained a pound at all. I only have one symptom and that is a little fatigue sometimes. My EF was 27 to 30% in May and 3 months later is 35%. Does anyone have or know about postpartum cardiomyopathy? I am just looking for someone close to my age - I am 28) - who has a situation similar to mine.
     What is the prognosis? When do you find out what your prognosis is? My cardiologist says he doesn't know yet. They are trying to see whether I get better or what. They say if it is from postpartum there is a good chance of recovering. I really love this site. Is there a certain life span they go by, or does it vary? Can heart failure be managed for a long time? I stick to the low-sodium diet that I am on. I walk and I do everything they tell me so I have no problem doing what I need to do. mattnpam@juno.com


Jan S' October 13 reply to Jon's October 12, 2001 - Hi, Good point, Jon. I went back and reread Rick's post and he did say laborer. That being the case, I agree that tranqilizer is more dangerous than helpful to the manual laborer. I was in management and did some work shop talks and it was a different situation. Thanks for pointing out the obvious reason about work situation that I missed. I've been visiting your site since November of 1998 and I appreciate all you do and the input from others as well, Jan. geschupja@aol.com
 
Jon's note: No sweat. Laborors on job sites these days do an awfully wide range of tasks, making it tricky work at times


Pamela's October 15 reply to Billie Jo's October 10, 2001 - Hi Billie, I have just recently put on a message. I am fairly new to all this. I was diagnosed in May, 2001. Anyway, you can read my message but I read your first message and I really like your attitude, as far as you saying we are not dying; life just needs readjusting. I still have my sad days because I know nobody can tell me how long I are going to live. They tell me if you do the right things it is very maneagable. You were my age when you were diagnosed. I read that you don't cheat. I don't either. I have now allowed myself a once a month cheat but that is it. I walk every day too. I hope to hear from you. mattnpam@juno.com


Harriet, October 15, 2001 - Hi, I am new at this. Last year I had an EF of 45% but it is now down to 25 to 30%. A year later, I have started taking Coreg (up to 6.25mg) and I feel better and my swelling is better. If anyone has advice that would help, please let me know. schuler190@aol.com


Ginger's October 15 reply to Pam's October 12, 2001 - Hi Pam, You can read about some women's experiences with PPCM at http://ppcm.jumphealth.com/ and if you go to http://www.heart-help.net/p.html, you will find a page with links to PPCM resources. I hope this helps. :-) I know there are people here that have PPCM as well. I am sure some of them will reply to this. I hope you're feeling better every day. Hugs and prayers, Ginger. angelgin@aol.com


Jon, October 15, 2001 - Hi everyone, A couple of things: It has been pointed out to me (thank goodness!) that some companies may be claiming to be somehow associated with me and may use images of my web pages or the name of my site as if we were linked. That is not the case. I am not affiliated with any company or project! This is a one man show. ;-) Please let me know if you run across any such claim so I can start filing complaints.
     Posts have been slow but that's cool. I am not holding any back but have welcomed the rest. It allows me time to accomplish a few things around the old homestead. <g> When it picks up, it picks up. My mailing list is alive and well - it's just that writing the implantable devices pages wore me out and I needed a break from all the authoring for awhile. For anyone who likes this sort of info, my site overall had a record day this month with 11,000 page views in 24 hours - I thank you all!
     Right now, my furnace is on the blink again, and I'm too cold to write anymore! Jon.


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

Talk to Jon Site Index