The paperwork never ends The Archives
July 1-15, 2002 Archive Index

Jon 7-1     gotta rest a few days
Jon 7-8     I'm sort of back
Irma 7-8     does anyone else get this way?
Loretta D 7-8     has anyone had gastric bypass surgery to lose weight?
Warren 7-8     seek ICD experiences
Lisa Z's 7-8 reply to Pauline's 6-28     amiodarone experience
Marly 7-8     Coreg questions
Jon's 7-8 reply to Marly's 7-8     raising Coreg dose
Charles Musgrove 7-8     seek VRT [CRT] pacemaker experiences (InSync)
Warren H 7-8     heart-related Time magazine article online
Sharon P 7-8     online resource suggestion
Scott Brown's 7-8 reply to Kathy's 6-27     Coreg experience
Scott Brown's 7-8 reply to Allen V's 6-28     losing weight is very difficult
Jon 7-8b     please take a look at this
Scott Brown's 7-8 reply to Pat L's 6-26     gout experience
Bill 7-8     seek ICD at concerts experiences
Katherine H 7-8     seek pulmonary hypertension experiences
Jon's 7-8 reply to Katherine H's 7-8     pulmonary hypertension & beta-blockers
Ann S 7-8     does anyone get upper back pain?
Larry Thomas 7-8     seek amiodarone info
Wayne 7-8     seek suggestions about breathlessness
Megie 7-8     have CHF & have some questions
Jonathan R 7-8     choking sensation - any ideas?
Ben B's 7-9 reply to Jonathan R's 7-8     angioedema maybe?
Nancy S 7-9     ICD experience, update & more
Rob's 7-9 reply to Jonathan R's 7-8     angioedema experience
Jim's 7-10 reply to Jonathan R's 7-8     choking sensation
Ruthie A's 7-10 reply to Megie's 7-8     sleeping, diabetes and CHF, & more
Joe S 7-10     frustrated with my doc
Jon 7-11     page updates
Ben B's 7-11 reply to Ruthie A's 7-10     how does CHF cause diabetes?
Sheryl C's 7-11 reply to Ruthie A's 7-10     diabetes, blood sugar, Coreg & more
Derald 7-11     good news update & more
Jacky 7-11     why am I so tired?
Tom S 7-12     hot weather warning
Ruthie A's 7-12 reply to Ben B's 7-11     also to Sheryl, diabetes and heart failure
Toby B 7-12     when no cell phone is available, what to do?
Elaine WB's 7-12 reply to Ben B's 7-11     diabetes
Elaine WB's 7-12 reply to Ruthie A's 7-11     intro, diabetes, stroke & more
Norma 7-12     question about chapped lips
Jon 7-12     boring stuff
Shelby's 7-13 reply to Elaine's 7-12     sleep apnea possibility
Sandy's 7-13 reply to Tom S' 7-12     Lasix dose?
Tracey C 7-13     back from vacation, update
Sherrell G's 7-13 reply to Norma's 7-12     lip problems
Will Williams 7-13     web page suggestion
Dorothy Powell's 7-13 reply to Ann S' 7-8     upper back pain experience
Karen F's 7-13 reply to Ruthie A's 7-10     diabetes
Joseph P 7-15     ablation, ICD upcoming
Jon's 7-15 reply to Joseph P's 7-15     the odds sound good
Sherrell G's 7-15 reply to Will W's 7-13     transplant story brings hope
Ruthie A's 7-15 reply to Karen F's 7-13     heart failure and diabetes
Jeanette W 7-15     seek Disability review experiences & advice
Tom S' 7-15 reply to Sandy's 7-13     post correction
John Len's 7-15 reply to Elaine WB's 7-12     heart failure, diabetes, sleep problems
Derald 7-15     improved EF but still have symptoms
Jon's 7-15 reply to Derald's 7-15     improved EF but still have symptoms
Jim L's 7-15 reply to Tracey C's 7-13     vacations and locations

Jon, July 1, 2002 - Hi everypone, I am sorry but I have to take a few days off. I am just too sick to do anything at all. I'll be back pretty quick, though. I always am. ;-) Jon.

Jon, July 8, 2002 - Hi everyone, I am sort of back. It'll take me awhile to catch up on everything, though. I thank you all for the nice e-mails. They are greatly appreciated - the people here really are the best! ;-) Naturally, the minute I start feeling better, I have something to do every afternoon this week. <g> I'll try not to get any further behind, though.
     I did put up some more pictures of my dawgs at Jon's Place.Jon.

Irma, July 8, 2002 - Hi, I was diagnosed with CHF at the beginning of March. It was the result of non-ischemic dilated cardiomyopathy due to a viral infection. I'm presently on a regimen of Avapro, Lasix, digoxin, and Aldactone as well as 3 different inhalers. My blood pressure is around 100/70 but my pulse doesn't seem to come down below 84 beats per minute and is usually around 100. I've been experiencing a weakness with shakiness, and I was wondering if others have had this symptom as well? I am 51 years old. Irma.

Loretta D, July 8, 2002 - Hi, I have been a visitor to this site for more than a year and I would like some advice. I have CHF, cardiomyopathy, leaky valves, sleep apnea, depression and anxiety as well as morbid obesity. I have just about decided to have gastric bypass surgery to lose weight, hoping to improve my health problem. I know I have a higher chance of dying during the procedure than others. Has anyone else with these problems had this surgery? With this surgery, absorption of meds and vitamins becomes a permanent problem. I am concerned about Cozaar and Coreg. Does anyone know how I could handle absorption problems with these meds? Please post or e-mail me. Thanks, Loretta.

Warren, July 8, 2002 - Hi, I have a history of heart attacks, 2 bypass surgeries, angioplasties, and in February 2 stents were implanted in a blocked bypass vein. I also have a premature heart beat and bradycardia - an abnormally slow heart beat. I also have CHF. Ten days ago I almost passed out while lying in bed watching television and ended up in the hospital emergency room. Three days later an ICD (Guidant 1861) was implanted near my left collarbone. I consider myself to be fortunate to have the device.
     What I would be interested in knowing is how helpful ICDs have been to other similar heart patients.

Lisa Z's July 8 reply to Pauline's June 28, 2002 - Hi Pauline, My dad was on amiodarone (Cordarone) for 18 months. He has an ICD, as he was in cardiac arrest twice in January of 2001. The amiodarone did the job it had to do for him, however he did have a few side effects. He began to lose some of his hair and after about 16 months he started to experience some difficulty breathing. Long-term amiodarone use can cause pulmonary fibrosis in some patients.
     He went to see a pulmonary specialist and they jointly decided with his electrophysiologist to discontinue amiodarone therapy. This was decided, because in 18 months, his ICD never fired. Keep in mind that there is an extended period of time that the amiodarone remains in your system even after stopping it. My dad's doctors thought this was a wonderful drug for my dad at the time and the lesser of two evils.
     If you trust your doctor, follow his advice but stay educated and watch for any unusual symptoms. I always tease my dad and tell him if he has a hangnail, he is going to the doctor! Best of luck to you.
Jon's note: Make sure the initial loading dose is reduced to maintenance dose properly

Marly, July 8, 2002 - Hi, I have had CHF for about 10 years now. I have been on 40mg Lasix daily, 25mg Aldactone daily, 0.25mg Lanoxin daily, amiodarone, Plavix, ASA, one gram L-carnitine daily, and 100mg CoQ10 daily for years. I had a very bad CHF episode leading to V-tach and syncope last February. My EF was around 19% then.
     Now, I've started 3.125mg Coreg BID for the past 2 weeks. Two weeks ago, I had tachycardia (120 beats per minute) and then bradycardia (40 to 45 beats per minute). My blood pressure ranged from 95/60 to 115/70.
     I've reduced my digoxin (Lanoxin) dose to half, although my dig level is still normal. I also reduced my ACE inhibitor dose by half. This is to accommodate the Coreg uptitration to 6.25mg BID, but I am afraid to do so because my heart rate remains in the lower 40s. I also feel nausea at the moment and get easily tired.
     Do you think uptitrating Coreg will eventually lead to higher blood pressure and heart rate, say low 60s?

Jon's July 8 reply to Marly's July 8, 2002 - Hi Marly, Generally speaking, Coreg should not be started or dose raised with a heart rate under 55 beats per minute. See this page. Jon.

Charles Musgrove, July 8, 2002 - Hi, My heart failure was diagnosed in November, 1998, at age 63. Subsequent Vo2max tests yielded (at about 6 month intervals) scores of 22, 18.5, 16.5, 19.4, 13.7, and 15.2. After the last two tests my doctor, a heart failure specialist, told me that I was still flying but barely clearing the trees, and he suggested that I consider cardiac resynchronization, a relatively new procedure involving installation of a pacemaker and leads into the heart which provide electrical impulses that make the two lower heart chambers beat in synchrony. Do any of you have any knowledge of the results of this procedure?

Warren H, July 8, 2002 - Hi, Those of you who are being considered for a pacemaker, ICD, or just have an irregular heart beat, may find it informational and "heartwarming" to read in the current issue of Time Magazine of July 2, 2002, "New Hope for an Ailing Heart." See,8599,263019, 00.html. Best wishes to all!

Sharon P, July 8, 2002 - Hi, My cardiac nurse practitioner just told me about a great web site called You are able to create an easy to read schedule of your medications and supplements. This schedule includes the time, the medication including the generic name, the dosage, a color picture of the pill, and a comment about its function. It is an easy site to use and will store your list for editing when necessary. I hope you find it as beneficial as I have found it to be. Blessings, Sharon P.

Scott Brown's July 8 reply to Kathy's June 27, 2002 - Hi Kathy, I am very positive on Coreg. The first 6 months were pretty tough on Coreg. I felt tired all the time, I had chest pains, it lowered my blood pressure (especially combined with Altace). I am up to 25mg twice daily now. For me, the worst jump was from 6.25 to 12.5mg.
     Your blood pressure is low. Are you actually passing out? Your decision to stay on Coreg should be measured against your quality of life. If life is unbearable with Coreg, maybe you could try one of the other beta-blockers. If you can hang in there, it usually took at least a month at each dose before I felt much better but your body will adapt to the dose. The side-effects are not very nice, but in the long term, it might really help. Good luck. I hope it works out, Scott Brown.

Scott Brown's July 8 reply to Allen V's June 28, 2002 - Hi Allen, I would not get too tied up with blood pressure. It can vary from person to person. My dad's normal blood pressure would get down to 70/39 and that was normal for his end-stage cardiomyopathy. He would not even feel dizzy with it that low!
     I have the same problem as you - weight! My weight is 255 pounds. Losing weight is the easiest thing we can do to reduce the load on our hearts. Unfortunately, the medications throw a big wrench in that plan. I ate less food and better food, but my weight slowly migrated upward. The medications seem to be working against my weight loss plans! Here are some of the reasons I think this is happening:
     Coreg makes me tired. I'm tired after a normal work day. I never feel like working out. When I work out with rigor, I hit a wall because the Coreg lowers heart beats per minute and puts an artificial ceiling on my endurance. I am restricted to moderate activities. I have a huge appetite (medication side effect?).
     So Allen, we are both in the same boat. We have to lose weight badly. Besides, if we want to be considered for heart transplant (looking down the road), we need to be under 180 lbs (maybe higher if you are really tall). We can't just have any heart, we need a big heart to handle the pumping it will have to do. Don't rack your brain over the blood pressure. Did your cardiologist say you are a candidate for heart attack? Good luck with your weight loss, I know I need it! Scott Brown.

Scott Brown's July 8 reply to Jeremy's June 27, 2002 - Hi Jeremy, It is normal for blood pressure to vary slightly but that sounds like a dangerous range. I would ask a cardiologist for an explanation. In general, I find that I can feel my Coreg "kick in." I used to feel the effects of Altace but no longer notice them.
     I assume you take Lasix. This can really cause blood pressure to drop quite a bit. I often lose up to 3 litres with a good water pill. I might get as high as 138 and as low as 108 after a water pill. I think that's all normal for us CHFers, Scott Brown.

Jon, July 8, 2002 - Hi everyone, Please take a look at Judy's 7-8 reply to Rita's 6-28 on the Loved One's side of the heart forum. Maybe someone has experienced what she describes. Thanks, Jon.

Scott Brown's July 8 reply to Pat L's June 26, 2002 - Hi Pat, My dad had gout in his foot and was in terrible pain. Two days with an anti-inflammatory cured him up until the next time. They hate to give anti-inflammatories to CHF patients because it works against what they are trying to accomplish with the heart.
     Gout can be a direct result of diuretics. If you can cut back on diuretics, this may help. As we know, the only way to can cut back is by restricting fluid intake. Gout is a buildup of uric acid in your joints (tends to start where gravity puts it). As you know, it can be agonizing! If you heart function is very poor, the fluid restrictions may not help. Best of luck, Scott Brown.

Bill, July 8, 2002 - Hi, I have been recovering since February of this year from a 3-week vacation in Temple heart failure and transplant unit. I have a Medtronics defibrillator, which I am happy to say has recorded no events as of 3 weeks ago. Overall I feel better than I have in a year. I was lucky enough to catch a virus which caused enlargement of my left ventricle. When I got to the hospital I was down to 5% ejection fraction and don't know at this time how far I have recovered but know by the way I feel that it is much higher.
     On to the question at hand. My son gave my wife and I tickets to see The Who for the end of the month for an anniversary present, and I was wondering if anyone out there has been to concerts with an ICD, and did they have any negative effects with their unit or health, etc? Any help or experiences will be helpful, Bill.

Katherine H, July 8, 2002 - Hi, My last echocardiogram showed that I have moderate pulmonary artery hypertension. I have not yet had a chance to visit with my cardiologist about this but have read your excellent material, Jon. I am assuming that my pulmonary hypertension is secondary and caused by the heart failure.
     Your information states that you should not use beta-blockers if you have pulmonary hypertension but I have to take Coreg for the CHF and cardiomyopathy. As I recall, it is not okay to take beta-blockers for those same conditions. So what does one do?
     Also, any of you out there with the same problem (pulmonary hypertension)? If so, what have you done?

Jon's July 8 reply to Katherine H's July 8, 2002 - Hi Katherine, You're in a bind on this one. Treatment should always be individualized to some extent and hopefully your doctor can strike a balance with your therapy. Be sure to see a doctor who treats PH patients. It's not a common illness and the more experience your doctor has actually treating PH patients in his practice, the better off you might be. Jon.

Ann S, July 8, 2002 - Hi, I've been recently diagnosed with DCM and CHF. I would like to know why I get a lot of upper back pains and whether anyone else gets this, and why.

Larry Thomas, July 8, 2002 - Hi, I am a new CHF person. I was diagnosed 6/3 and had a massive stroke (which the Lord is miraculously healing) 6/4 of this year. I have many things going on, one being an irregular rhythm for which I am taking 200mg per day of amiodarone. I had someone suggest I look up info on this drug. Does anyone here have some info they could share? All I've found is that it is new and the best thing but this other person kind of seemed hesitant about it, Larry.

Wayne, July 8, 2002 - Hi, I have symptoms that feel like an upper respiratory irritation, plus I often sound like Marlon Brando in the Godfather when his voice was so airy and breathless. However, my cardiologist and pulmonologist both say that my lungs are clear. This feeling does not always coincide with being out of breath, but sometimes it does. I've been taking Lanoxin and Coreg for 7 weeks. I started Lotensin, but switched to Cozaar 2 weeks ago. Can anyone help explain these symptoms?

Megie, July 8, 2002 - Hi, I am new to this forum and would like to ask a few questions if I may. I was diagnosed with IDCM and CHF approximately 4 years ago. I have just been diagnosed with type II diabetes. I am a 43-year-old Caucasian female. I read the information here on diabetes and heart failure but it speaks of having diabetes and then heart failure. What are the implications of having the heart failure first? Is it the same deal?
     My medications are Coreg, Lasix, Prinivil, Aldactone and digitalis. I also take a good multivitamin and extra magnesium.
     Another thing I would like to ask about is about fluid overload. I have an EF estimated at 40% with an enlarged left atrium and left ventricle, with moderate mitral valve regurgitation. I have been told that the regurgitation is from the stretching of the ventricle. My CHF doctor just upped my diuretic dose again because I am still holding some fluid. Six months ago I had mild hypokinesis; now I have moderate and severe hypokinesis to the front part of my heart. Could it be that this is being caused by the fluid overload or just the opposite?
     I have also been on a sodium and fluid restricted diet of 2 grams of sodium a day and 1.6 liters of liquid of any kind daily. You all seem like such wonderful people and I am sorry for anyone's suffering. Jon, thank you for this site and I hope and pray that you feel better soon, Megie.

Jonathan R, July 8, 2002 - Hi, I was recently diagnosed with CHF. I have this choking sensation in my throat and I feel like I am not getting air although I am. My oxygen saturation rate is normal. The doctors seem to not think this is significant but I feel like my throat/chest is swelling and I won't be able to breathe. Is this normal?

Ben B's July 9 reply to Jonathan R's July 8, 2002 - Hi, I have heard that this type of swelling of the breathing passages can be a dangerous reaction to ACE inhibitors (angioedema). It is a rare occurence but if this is really happening you should mention that possibility to your doctors. A lot of things can be in your head as well. I think that for awhile I imagined almost every symptom I ever read about and many I didn't, but better safe than sorry.

Nancy S, July 9, 2002 - Hi everyone, I have some great news to share which may also answer a few questions that I've read about ICDs. I went to see my CHF specialist for my 3 month checkup the other day. It's been 8 months since I got my ICD. Everything is working great, I have had no firings, the Medtronic technician said that my threshholds are fantastic and I don't have to go back for 6 months. Also, he wants me to be in an advertisment that they are going to make for their ICD. I guess it doesn't get any better than that! I just wanted to share some good news to try and help others feel better.
     I'm still working 40 hours a week and feeling better than I have in years. I do still get tired but my job is very physical and I think I would get tired even if I didn't have CHF. My blood pressure is still down and they took me off Lasix to see if it would go back up, but it goes up and down. Some days it is 105/60 and others 88/40. It doesn't seem to make a lot of difference in how I feel now that my body is getting more used to it. Sorry to go on so long. I'm glad you are feeling better Jon, and thanks for being here for us, Nancy.

Rob's July 9 reply to Jonathan R's July 8, 2002 - Hi, The time I had a similar choking feeling, it turned out to be edema (swelling) of the throat due to allergic reaction to ACE inhibitor (prinivil). I hope that helps narrow the list of possibilities.

Jim's July 10 reply to Jonathan R's July 8, 2002 - Hi Jonathan, I too have the choking sensation. However, it is not all the time, mostly after I have used my nebulizer and when I lie down to sleep. My saturation rate is normal also. The doctor also doesn't know what it is, and seems to think it is not important. My wife Judy often agrees with Ben's reply to you that often it is in my head. Perhaps so, but I sure would like to know what it is. Thanks to Ben, I will ask the doctor again with your reply in hand. Good luck to all - especially those in the very humid weather of the midwest.

Ruthie A's July 10 reply to Megie's July 8, 2002 - Hi Megie, I tried to send you an e-mail but it was returned as undeliverable. I don't think I can mail to aol dot com addresses. If you have another e-mail address, would you mind listing it so I can write to you?
     I, too, have type II diabetes that was diagnosed after having CHF for about 4 years. My doctor said that the heart failure was the most probable cause. Actually, she was surprised that it took so long for me to develop diabetes. I guess she has had CHF patients that get diabetes early on. Anyway, it is not as uncommon as you would think. It's just that the publicity is for diabetes causing heart disease and how important it is to keep one's sugars under control.
     Speaking of which, I have to begin insulin next Tuesday. My sugars fly into the stratosphere at night and the effect is not very pleasant. I am hoping that with better control of my night-time blood sugar levels I will feel better all over. Right now I am having a lot of trouble with rapid heart rate in the night and early morning. I also am not sleeping well. I only get one or 2 hours of sleep in any 24 hour period. That has been going on for a couple of weeks now, but hopefully once I start the insulin I will be able to sleep again.
     I have forgotten what it is like to feel good. I am learning the hard way why the doctors want diabetics to keep a handle on their sugar levels. Stay cool everyone, Ruthie A.

Joe S, July 10, 2002 - Hi, I don't think I am going to trust cardiologists again. Last Tuesday my doc gave me a sample of Toprol-XL. I took it at ten that night and by midnight I couldn't catch my breath. I called their office and was forgotten. The next day their nurse called me and said it wasn't an allergic reaction but almost a reversal of what it was supposed to do. I went to my PCP yesterday and the nurse practioner verified what I was told and then informed me they had been giving me beta-blockers since surgery. Then she got upset because I regulate my own meds. Go figure. I guess it's back to square one, although I am finally able to exercise a lot more with no problems, even going on the Nordic Trac for a few minutes, Joe S.

Jon, July 11, 2002 - Hi everyone, the folowing pages have been updated:


Ben B's July 11 reply to Ruthie A's July 11, 2002 - Hi, Did your doctor tell you how the CHF caused the diabetes? Usually I have heard of it as the other way around - diabetes causing CAD and in turn CHF. I know diabetes is a risk factor for CAD and I know that the same condition, namely obesity, that is a primary cause of diabetes is also a possible contributing factor to CHF, but I've never heard of CHF causing diabetes. I always thought they were just two health conditions that sometimes happened together. Actually, since I think about 10 to 15% of the population is diabetic it would make sense a lot of CHFer are diabetics as well. I know Coreg can raise blood sugars, but that is an indirect cause. I'm not saying it isn't possible, I'm just curious to hear more about it.

Sheryl C's July 11 reply to Ruthie A's July 11, 2002 - Hi Ruthie and Megie, I have been on insulin for a year now and would be happy to answer any of your questions to try and help you regulate your blood sugars. The main thing on the diet is to only eat 1/4 cup of white starches at a meal. Those rice, potatoes and pasta servings will really send your blood sugar way up and keep it up. White bread doesn't even exist. Once you get your sugars regulated you will feel so much better. More energy!
     Megie, welcome to the forum. Your sodium intake sounds a little high. Is that the limit your doctor gave you? I try to keep my intake to under 1500mg daily or lower. I think Coreg has a lot to do with developing diabetes but I doubt if your doctor agrees. Maybe we don't exercise as much after getting CHF so our bloo sugar levels go up and finally show up in the tests. Good luck to you both, Sheryl.

Derald, July 11, 2002 - Hi All, Just to let you know I've got good news. My EF is in the 50 to 55% range and my heart size is back to normal in 7 months. I still feel really bad a lot, but the doctor says that's the Coreg. He's putting me back to 12.5mg BID with instructions for 6.25mg BID if necessary. Now he's suspecting my problem might have been viral. I've been doing the CoQ10 thing and will continue that along with the ACE-1 inhibitor and Coreg. My new goal is to continue my new healthier eating habits with my weekly exception :-) and to lose 30 pounds. Hey, does this mean I can start smoking again? <g>

Jacky, July 11, 2002 - Hi everyone, I need some reassurance! I have cardiomyopathy with, three months ago, an ejection fraction of 35%. The last two weeks or so I have been so tired I don't know what to do with myself. This is much worse in the morning than the evening. It is hot here in the summer but I have air conditioning. Am I just lazy? Could it be the meds, even though I have been on them for 6 months or more? I take amiodarone, Diovan, Lipitor, Synthroid, Fosomax and aspirin. Fatigue seems to be my only problem at the moment. I'm glad you are feeling better Jon, Jacky.

Tom S, July 12, 2002 - Hi, This past week I suddenly was struck with a dizzy feeling, like getting-off-a-boat dizzy, not room-spinning dizzy, accompanied by a mild case of nausea. It hit like a thunderbolt but because it was rather mild I thought it would go away in a short time. It didn't. It hung with me all night long and the next morning during a well-baby visit to the pediatrician's office with two of my children he even noticed I was green around the gills. At one point he mentioned that he had forgotten his blood pressure pills, which made me think perhaps mine was the opposite problem. Perhaps I was suffering from low blood pressure.
     Sure enough, when I checked it with a pressure cuff my BP was 82 over 54 and never got above 96 over 62 the rest of the morning and afternoon, so I called my cardiologist's office. They returned the call later in the day and suggested it was being caused by dehydration because of the hot and very humid weather, with temps between 96 and 103 all week. They told me to cut my Lasix back from 160mg twice a day to half that amount. I followed their advice and actually didn't take any meds that evening and felt fine the next day, which is today.
     So watch it in this hot weather and don't cut back so much on fluids that you end up with low blood pressure or something worse.

Ruthie A's July 12 reply to Ben B's July 11, 2002 - Hi Ben, I am not sure how CHF causes diabetes. All I know is what my doctor told me. She said that diabetes and, in this case, CHF are inextricably intertwined. One seems to feed off the other. She explained that the researchers don't understand the dynamics between diabetes and heart failure. It is one of those problems they are working on. Since diabetic patients are more at risk for stroke and CAD, that gets the most publicity. However, she says that developing diabetes from CHF can and does happen. True, I am overweight and that has contributed somewhat to the development of the disease but my doctor said it was not the primary cause; my heart failure was the main culprit.
     Sheryl, thanks for the offer. If I need to, I will take you up on it. I have been learning how to integrate a diabetic diet and a CHF diet. It has been very difficult, but I think I am getting the hang of it. I learned the hard way about the starch intake. One baked potato taught me that! <g> My doc says I am doing pretty well during the day. My need for insulin at this point is only at night. We all excrete a steroidal hormone at about 3 or 4:00 AM that naturally elevates blood sugars. Unfortunately, I seem to excrete it early and in greater quantities. We are hoping that insulin will bring those night time levels back down to where the day time levels are, Ruthie A.

Toby B, July 12, 2002 - Hello, What a helpful site. Everyone here deserves a big round of applause. I am writing with a question regarding my father. My dad currently is implanted with an LVAD and awaits transplant. He has just returned home from the implant surgery. However, because he lives in a remote area (47140 zip code), it is almost impossible to get any type of cellular service, whether that be beeper or cell phone. I am sure this issue has come up before and I am curious if anyone has any thoughts or experience with this? If not, does anyone know where I may get this question answered? Thank you in advance, Toby Buchanan.

Elaine WB's July 12 reply to Ben B's July 11, 2002 - Hi, I found out that other things besides obesity cause diabetes. I had to take prednisone therapy for a lung condition. It can damage your liver and I wound up with diabetes. The same thing happened to a friend of mine who takes prednisone for her Multiple Sclerosis. It's just one of those things you have to choose sometimes in the big game of living or dying.
     I have not posted before, but I am very grateful to Jon and everyone here for being here. It is a reassurance and comfort to know I'm not alone and can learn so much from you all. Thanks to everyone, Elaine.

Elaine WB's July 12 reply to Ruthie A's July 11, 2002 - Hi, I was diagnosed with CHF July of 2001, after having diabetes since 1992. I was started on insulin in March of 1997 along with glucophage tabs. I found I have felt much better since starting the insulin. My head is clearer, most of the time! <g> It seems my body made the adjustment much better than even the doctor thought. I managed to keep my blood sugar control good until September 4, 2001, when I had a stroke. I was in the hospital sleeping when it happened and I must say I highly recommend that if you are planning a stroke, the hospital is the best place to have it!
     I have had very few residual effects from the stroke but the one thing that has continued to persist is high blood sugars. The question that I have not found an answer to from anyone is, if there is some internal damage from the stroke that we cannot see that is causing me to spike the high sugars? Does anyone have any ideas? I'm going to the Texas Diabetes Institute in San Antonio in the next few weeks to see if they can figure this one out and tell what to do to keep on keeping on.
     Ruthie, I have problems sleeping as well. I thought it was probably just me but I sometimes only sleep 3 or 4 hours a night, in the very wee early morning hours. I rest as my doctor has told me to do at least 2 times daily for about 20 to 30 minutes at a time in the recliner with my feet up. I find that helps but I really would like to get a good night's sleep. I did about 2 weeks ago, when I slept for 10 hours straight. That's what I do every now and then. I guess it's the body catching up. Any ideas?

Norma, July 12, 2002 - Hi everyone, Good news and bad news! My ejection fraction has gone down from 25% to 15%, but I'm feeling okay and have been to a couple of parties lately where I've been able to dance with no shortness of breath whatsoever. I need advice on one thing. My lips have become very dry and red in patches, and it looks like I'm wearing lipstick all the time. Despite having tried Zivorax, chapsticks, Vaseline, eye cream (a pharmacist suggested this) and a lip salve from Merle Norman cosmetologists, things are getting worse rather than better. Has anyone had these symptoms and can you offer any suggestions? Norma.

Jon, July 12, 2002 - Hi everyone, Due to the added necessities of being incorporated, I now have some boring but necessary documents online. If you want to read them, they are the privacy policy, the about, Inc. page, and the, Inc. mission statement. I am no longer putting page counters on new pages because they undercount so badly it's ridiculous. I will be depending on server logs to monitor traffic instead. ;-) Jon.

Shelby's July 13 reply to Elaine's July 12, 2002 - Hi, For people who are having trouble sleeping, have you been evaluated for sleep apnea? A lot of CHF patients do have sleep apnea and obesity is another cause of it. If your symptoms seem like those of sleep apnea, I'd definitely bring it up with your doctor. A lot of primary care doctors miss this. Good luck.

Sandy's July 13 reply to Tom S' July 12, 2002 - Hi Tom, Were you really taking 320mg of Lasix twice a day? Please tell me this was a typo, that's just way too much for anyone! :-) Sandy.

Tracey C, July 13, 2002 - Hi everyone, We just got back from our first vacation since being diagnosed. We spent 2 weeks on the road driving from California to the south. We saw 16 states. I'm envious of all of you who live down there. It's just beautiful, but I'm sure the heat's a bit tough. It was just a really great mental boost. I had only one questionable day with the rest being just perfect. We bought a refrigerator for the car and I brought some staples with me but ate out every night, even though I had to send most things back a couple times. I actually lost 6 pounds on the trip because I wasn't eating as much while trying to be careful. For about 3 days after getting home my blood pressure was running about 80/50. I've since gained back the 6 pounds and my blood pressure came back up to what's normal for me. My MUGA is scheduled for a couple weeks from now, so it's back to reality. Take care, everyone.

Sherrell G's July 13 reply to Norma's July 12, 2002 - Hi, My daughter experienced lip problems similar to what you describe. After trying different solutions, she finally went to a dermatologist who determined she was allergic to the additives in tooth paste. So now she only uses the plain kind, with no gels, whitening agents, etc. Once it cleared up, she has had no further episodes. I hope your problem solves as easily.

Will Williams, July 13, 2002 - Hi everyone. I haven't been in for awhile, but I thought you might like to look at my new web page. It has some family history, plus information about my waiting for and receiving a heart transplant on December 19, 1996. I also have some info on my family and my woodworking hobby. I hope you enjoy it and find hope for your own wait for transplant. You can find it at: Good luck to all.

Dorothy Powell's July 13 reply to Ann S' July 8, 2002 - Hi Ann, I have had quite a lot of upper back pain. Actually, mine is almost always on the left side. My doctor prescribed Celebrex twice daily, which I have been very careful not to miss. The other thing I do is drink 8 ounces of water - as soon as the pain begins. I know that many CHF patients have strict orders to limit their liquid intake. I do not know which helped the most, but I am happy to say I have not had the pain in weeks. I hope this is helpful, Dorothy.

Karen F's July 13 reply to Ruthie A's July 10, 2002 - Hi, This is what I know about diabetes and CHF. Diabetes puts extra strain on the heart, increasing risk for heart failure. People with diabetes also tend to be overweight and have high blood pressure and high cholesterol, all of which make the heart work harder. Typically these conditions cause the wear and tear that can lead to heart failure. A combination of any of the above factors dramatically increases risk. (see Is it possible in your case that the diabetes was already latently present but undiagnosed until after your CHF had been diagnosed?

Joseph P, July 15, 2002 - Hi Jon, I have just returned from my electrophysiology doctor and I am still having a-fib episodes. I have talked to him for about 8 months about ablation. He stated that I have a better than 80% chance that it will work and then he is going to update my ICD with a new version with the 3 wires that controls both sides of my heart. It is the InSync version. Any comments on this? Joe.

Jon's June 15 reply to Joseph P's July 15, 2002 - Hi Joe, Not really. If it all works out, it'll be great. If not, you probably don't lose much. Nothing wrong with those odds, as far as I can see. ;-) Jon.

Sherrell G's June 15 reply to Will W's July 13, 2002 - Hi, Thanks so much for sharing your web site. Your transplant story gives me additional hope. I was listed on June 13 at Emory University Hospital in Atlanta, Georgia. I was first diagnosed in late 1994.

Ruthie A's June 15 reply to Karen F's July 13, 2002 - Hi Karen, When I was first diagnosed with CHF I was tested to see if I had diabetes as well. Nada. Then 2 years later I was tested again. Nope. Last fall when I had routine blood testing, my sugars were checked again and they were high, but not seriously. As the months have passed, my sugars got higher and higher until I learned how to readjust my diet and change my exercise routine. Now they are not too bad, except for night. So either I am a weirdo or it is possible to have CHF first and develop diabetes after, Ruthie A.

Jeanette W, June 15, 2002 - Hi all, I'm sorry I haven't been around much but I've been busy and just don't seem to have enough hours in the day to get things done. This is my question: When getting your first review for SSD do they have you go through a psychiatric evaluation too? I am going through my first review for SSD and they want me to have a psych evaluation.
     My EF is only 35% and I am having lots of symptoms of CHF. I am afraid of them taking my SSD and SSI away and now going through this evaluation this week really bugs me. I already see a therapist, what else do they expect to put me through? Should I get myself an SSD lawyer? I was never denied. In fact, I was approved right away when first diagnosed with DCM. What am I to do? Any help would be greatly appreciated!

Tom S' July 15 reply to Sandy's July 13, 2002 - Ooooops! Make that 160mg twice a day.

John Len's July 15 reply to Elaine WB's July 12, 2002 - Hi Elaine, I have been on insulin since the late 1980s. I have CHF and sleep apnea and like you, I only get to sleep at about 2:00 AM or later. I usually get about 4 to 7 hours of sleep. At first, I put the late sleep time to a 2:00 AM heart attack I had a few years ago but it is ongoing. I do not like taking a sedative because of being on a bipap machine because of the sleep apnea, so here we go.

Derald, July 15, 2002 - Hi all, as I said earlier, my EF has gone up to about 50%. My CHF specialist understands that there are medication issues but basically considers me "cured." While I'm feeling a better, I certainly don't feel cured. Is that all there is to it - get the EF back to 50 to 55%, and then its all in your mind or med side-effects?

Jon's July 15 reply to Derald's July 15, 2002 - Hi Derald and everyone, No! In fact, there is a drug trial in progress (still recruiting) for a "calcium sensitizer" specifically to help CHFers with EFs over 40% who still have strong heart failure symptoms. I have an EF that went for 13 to 50% and has dropped recently to just over 40%. I have disabling heart failure symptoms. In the last 24 hours, I gained 2 pounds while eating my lowest sodium meals in a long time.
     Heart failure is not just a condition of reduced heart function! The RAS and other neurohormonal systems go completely squirrely. These systems are not just related to heart function. They can screw around with all kinds of internal workings. On top of that, the endothelium - which is the lining of the inside of all our blood vessels - no longer functions normally once CHF hits us, and improved heart function does not magically repair the endothelium, so we have decreased endurance with less efficient use of oxygen and more, from that alone. There's plenty more but you get the idea.
     On the other hand, deconditioning is a brutal and relentless problem. I am amazed at how hard it is to keep some kind of muscle tone and mass while being so tired and short of breath all the time. You really have to be willing to work through a lot of fatigue and plain boring, hard work to get into shape and stay there. This can make a huge difference in how you feel because your body makes far more efficient use of the oxygen it gets when you're fit and not overweight, regardless of how much oxygen it actually gets.
     However, if you're in fairly decent shape with a decent EF and still have symptoms, you are not alone, I can assure you. ;-) Jon.

Jim L's July 15 reply to Tracey C's July 13, 2002 - Hi, Isn't that the truth?! I returned from the southwest about a month ago. If there is a place that resembles heaven, it would have to be Arizona. What beauty! However, I do agree that the heat is not too good.

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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