The paperwork never ends The Archives
August 1-15, 1999 Archive Index

Virginia P 8-1     good news - I'm off transplant list
Bill D's 8-1 reply to Linda's 7-30     address bounced
David 8-1     invisible diseases & to work or not
Margie F 8-1     tired spells, bad days question & more
Jon's 8-1 reply to Margie F's 8-1     tired spells, bad days, possibilities
Christine's 8-1 reply to Renee M's 7-28     diets, & a question
Ranelle's 8-1 reply to Danny S' 7-30     vision problems & Coumadin possibility
Pat D's 8-1 reply to Mark S' 7-30     odd smells
Judy Gilbreath 8-1     intro & more
John Len's 8-1 reply to Danny S' 7-30     blurring vision possibilities
John Len's 8-1 reply to Ben B's 7-30     SSD
Rita 8-1     seek others in same boat at age 30-something
Jack's 8-2 reply to Christine's 8-1     carbohydrates, protein & sodium content
Renee M's 8-2 reply to Joy R's 7-30     coping with heat & humidity
Renee M's 8-2 reply to Danny's 7-30     blurred vision needs examination
Renee M's 8-2 reply to Mark S' 7-30     sensitivity to odors
Cecil 8-2     questions about Lasix-induced gout
Joe S' 8-2 reply to Jill S' 7-28     altitude & symptoms, questions & more
Barbara S 8-2     diets
Jon 8-4     stuff
Joe S' 8-4 reply to Renee M's 8-2     moving & humidity, blurred vision, smell
Karen K 8-4     update, EF vs quality of life
Jon's 8-4 reply to Karen K's 8-4     EF vs quality of life
Renee M's 8-4 reply to Cecil's 8-2     Lasix, gout & possibilities
Margie F 8-4     got my SSD!
Janet S 8-4     forceful heartbeats, questions
Sara 8-4     blurred vision possibility, amiodarone
Helen O 8-4     update, adding Coumadin, weight gain & more
Grace J 8-4     hair loss, question, ear pain
Jon 8-5     update on Linz
Will W 8-5     heart transplants
Ruthie A 8-5     update & prayer request
Robin Lynn 8-5     update, blurred vision & Coumadin, enzyme questions
Betty S 8-5     update, to Janet S & more
Lee R's 8-5 reply to Karen K's 8-4     EF, numbers vs how you feel
Luc D 8-5     wanted to say hello!
Susie O 8-5     cuticle color change questions
Jon's 8-5 reply to Susie O's 8-5     cuticle color change
Jon 8-6     pulmonary hypertension, FAQ page
Grace J's 8-6 reply to Janet S' 8-4     pounding heart beats & diet
Linda O 8-6     questions about bloody urine, infections, amiodarone
Jack's 8-6 reply to Susie's 8-5     Coumadin & toe problems
Brenda H 8-6     potassium & Lasix, questions
Jon's 8-6 reply to Brenda H's 8-6     potassium & Lasix
Danny S' 8-6 reply to Margie F's 8-4     SSD
Brenda H's 8-6 reply to Will W's 8-5     welcome words
Robin W 8-6     post-transplant update
Tom S' 8-6 reply to Susie O's 8-5     fingernail area coloring
Carolyn B 8-6     questions about teen's weightlifting
Rick M's 8-6 reply to Brenda H's 8-6     potassium & diuretics
Jon's 8-6 reply to Janet S' 8-4     forceful heartbeats
Jon 8-9     update, searching
Brenda H's 8-9 reply to Jon's 8-6     weird crawling feeling on back
Dee K's 8-9 reply to Susie O's 8-5     fingernail color & oxygen
Margie F's 8-9 reply to Dan's 8-5     that SSD wait
Pat D's 8-9 reply to Dan's 8-6     SSD & pulmonary hypertension
Kim S 8-9     fractional shortening question
Carolyn H's 8-9 reply to Linda O's 8-6     urinary tract infections
Julie 8-9     update, questions about Ornish plan
Bob P 8-9     questions about CHF meds & symptoms
Jon's 8-9 reply to Bob P's 8-9     CHF meds
Rhonda 8-9     irregular heart beats questions
Robin Lynn 8-9     three trees
Linda Hoke 8-10     seek questionnaire volunteers
Danny S 8-10     a-fib & taking showers
Pat L's 8-10 reply to Carolyn H's 8-9     Lasix & water intake
Jon's 8-10 reply to Pat L's 8-10     Lasix & water intake
Susie's 8-10 reply to Dee K's 8-9     oxygen level, hospital stay, update
Jon 8-11     updates

Virginia P, August 1, 1999 - Hi, I just wanted to let all of you know I have been removed from the heart transplant list. Thanks to God, Coreg, my heart doctors, and to me for following all the rules and regulations (you know all the things about diet, sodium, limit on liquids, etc) and for taking all my medications when I was supposed to. I was placed on the transplant list in April of 1995 and was at that time told I would not make it 4 years without one, and because of a high panel reactive antibody, I had a higher likelihood of acutely rejecting on the table during the transplant operation. Just see what the power of prayer can do. I still have an EF of 30-35% and a weak heart, but I feel now that I will be able to live out my life span. There is hope for every one of you and keep the faith. Love to all. Virginia.

Bill D's August 1 reply to Linda's July 30, 1999 - Hi Linda, I tried to e-mail you some help but I got my letter back with, "The following addresses had permanent fatal errors - episcola@p'" Sorry. Bill.

David, August 1, 1999 - Hi, I have had DCM since October of 1997. I started out with full body edema and an EF of 17%. I'm taking 12.5mg Coreg twice a day, 0.25mg Lanoxin, 10mg Prozac, 40mg prinivil and 40mg Lasix. I take these in this order to help to retain my energy throughout the day. My EF was up to 45 to 50% at my last testing. I also had to be defibrillated in May of 1998. All is looking good now that I have stopped working. I would like to say, do not work if you do not have to. I was a self-employed barber and stylist for 28 years. I went back to work 2 weeks after going to the hospital because I tried to keep my business going. I am very stubborn and did not want to admit my illness, and because of this, I have been turned down for SSD 3 times now. I am appealing again. Being self-employed, they go with your gross income, not your net. They also state that you could go to work, and they don't care if you are killing yourself to keep your life together. To do it all over again, I would listen to my GP and just go for a walk every day and eliminate the stress in my life. I thought it might help someone just starting down this lonely road. Next time, they say you look good, just smile. Peace and love, one day at a time.

Margie F, August 1, 1999 - Hi, Jon, I have been having problems again with tired spells. It's more than just being tired; my body feels funny (sort of like, fuzzy). Don't laugh, my husband did when I tried to explain how I felt. Even though my fluid retention has been stable, it seems like my tolerance for activity is dropping. Is this a contradiction? I'm on Cozaar, Coreg, digoxin, potassium, 80mg Lasix and Coumadin. Plus, could you explain what happens to our bodies to cause these tired spells? Margie F, EF 20, AICD, CHF, age 53.

Jon's August 1 reply to Margie F's August 1, 1999 - Hi Margie, There's no contradiction. When my cardiac output dropped so far that my CHF doc wanted to put me on the transplant list 2 years ago (or so), I never showed any signs of edema at all. Let's face it, doctors really still don't know why our bodies do all the things they do, and they may never understand it all. Part of the equation is sleep - both quantity and quality, regular exercise, weight control, dehydration - which hits more of us than we think, and who knows what else. Tired spells, bad days, good days: they might be due to our EF fluctuating from hour to hour or day to day, changing chemical balances in our bodies, diet, and again, who knows what else. I wish I could explain it but I can't. All I can do is vouch that regardless of EF (mine has varied from 13 to 45%), bad days happen, they can last weeks and they stink. :-)
     Your description of the fuzzy feeling sounds somewhat similar to what I experience when I take Nitrostat for angina. Do you have postural hypotension - getting lightheaded when you stand up after sitting or kneeling, or when straightening up after bending over? Maybe your arteries are too dilated. That's one very wild guess, but I thought I'd mention it. It could also be a potassium problem or some dehydration, both of which can make your body feel "funny" or "fuzzy" including a tingling or "buzzing" feeling of the skin. If you feel that, you should have your potassium levels checked as soon as possible. Jon.

Christine's August 1 reply to Renee M's July 28, 1999 - Aloha, I have not posted in awhile since life can get you busy. I was also going through the blues period but am better now. I was reading some posts on the Atkins' diet and thought Renee M's post was very sensible and practical. If it is not the sodium or the fat, one of them can kill you. I recently went to the hospital to visit my father in law, who was there for some angina pains. He is 77 years old and otherwise very healthy. I saw this other friend next door, admitted to the hospital and you can guess what he had; a heart attack, after being on the Atkins' diet. He had built up so much sodium that his kidneys almost shut down. So I would say, like Renee, that balance is the best. Believe me, I am not a chef but I try all kinds of things with my vegetables. I am open to ideas and always have an enjoyable meal.
     The other reason I posted is I want to find out from anyone if they have heard of The Design for Life Center. I have heard of diabetics getting off insulin (too good to be true). Well, if you know about it, let me know, although I would be very careful about something like this. I believe they put you on cleansing and a diet according to your blood type. Well folks, good to post again and God bless. Take care of yourselves. Chris.

Ranelle's August 1 reply to Danny S' July 30, 1999 - Hi Everyone, I'm a new kid on the block, who has been reading and learning for a few weeks. Danny, I have had a slight problem with blurred vision also. I say slight because this has only happened 5 or 6 times in the two months since I have been diagnosed with DCM and CHF. Mine comes on more slowly and ends up like little bugs swimming around in front of my eyes. It lasts 10-15 minutes. I mentioned it to my doctor and he did not comment on a cause. I have kept rather careful records of my diet and medication, and I believe that I can trace each occurence to my Coumadin intake. If you want more details, e-mail me.
     I became more sure of this last week because I had to go off Coumadin for a few days for some dental work. I had not had any vision problems for a couple of weeks and I felt really good during the time I was not taking Coumadin. When I started Coumadin again, I had the vision problems 2 days straight. I called the doc and he said that he doubts it is the Coumadin but for me to come in and see him, and we will talk about it. When I go in, my plans are to try to talk him into letting me try aspirin therapy, since I don't have atrial fibrillation. I would love to know if anyone else can attribute this to Coumadin.

Pat D's August 1 reply to Mark S' July 30, 1999 - Hi Mark, Your odd problem needs to be assessed. It's possible to smell odd things if you have a sinus infection or have been exposed to ammonia and it got in your clothes or hair, but there could be a more serious cause. Smelling things that aren't there is a common symptom of a brain tumor. I don't want to scare you, just make you aware. If this problem continues, you should see a neurologist for assessment. Pat.

Judy Gilbreath, August 1, 1999 - Hi, What a wonderful site! I was diagnosed in June of 1997 at the age of 51, with CHF. After several days of suffering SOB and severe pain in my right side, I went to the ER. I had been trying to wait for a scheduled doctor's appointment that afternoon. That was the only time I've ever been in an ER that didn't require me to fill out a million forms while I bled all over their floor. They took one look at me and got me immediate care. I was very lucky. Waiting those few more hours would have been disasterous, according to the docs. I was sure I had lung cancer after 33 years of smoking so I was kind of relieved to hear CHF. Of course, I didn't really know what it was. Now, a little more than 2 years later, I realize just how fortunate I am to have had private disability insurance as well as good health insurance and a loving, supportive husband. It has been difficult but thanks to God and wonderful doctors and lots of meds, I'm doing pretty well.
     In comparison, I have a lifelong friend, a woman my age who has had CHF over 8 years. Our medical reports are about the same but she doesn't have the advantages I have. She is divorced from a lawyer but he really knew how to work the system. He left her with 2 children, insurance on them (but she pays the deductable), no insurance for her and a comparatively low level of alimony and child support. Her oldest child turned 18 last April and he has already cut the child support. Forget about college, even though this child is the son of an attorney and definitely is college material. My friend cannot qualify for SS Disability because she does not have enough quarters worked. She was raising children at the time. She tries so hard it just breaks your heart. She is going to nursing school and has 2 years left. How she does it, I'll never know. She does have Pell grants and student loans but our wonderful government recently eliminated some displaced homemaker programs that could have helped her. Yet we can send billions in aid overseas. I just don't get it. I'm rambling and I'm sorry but I had to get this off my chest.

John Len's August 1 reply to Danny S' July 30, 1999 - Hi Everybody, Danny, I have had that problem from time to time but it has always cleared up on its own. I am diabetic as well as having CHF and get my eyes checked every year because of it. The check shows no problems except for the beginning stages of cataracts, which I am told, is average for a diabetic 64 year old man. Back to your question, I have not changed drugs in recent times so I cannot account for the blurring except for occasionally high glucose readings on my meter when I get careless about not taking my insulin. For starters, get your blood sugars checked and see your eye doctor and go from there. John.

John Len's August 1 reply to Ben B's July 30, 1999 - Hi Ben, One of the ongoing problems faced by Social Security other than standard bureaucratic booboos is the ability of many in our society to take full advantage of the system. Unfortunately, the vast majority of legitimate Disability recipients must suffer because of them. Have you read some of the reports of crooked doctors, lawyers and citizens taking unfair advantage of the system? Oh, if this was a perfect world?! John.

Rita, August 1, 1999 - Hi All, I haven't posted in quite awhile. I hate to admit how long it's been since I even prowled around. All remains about the same for my son Donnie, who is age 34. I have to admit we haven't really been watching his sodium intake like we should. He's 6'3" and weighs 140lbs. He's gained 5lbs. He was down to 135lbs, a walking skeleton. He can't keep his lower back in place; no muscles there. When we talked to his cardiologist about this, he seemed happy with Donnie's weight. He only weighed 150 before he got sick so he really didn't have any to lose. Has anyone else had a weight loss problem? I know there are others out there 30ish. We would sure like to hear from you. Donnie really gets down because he is so young. I was communicating with a lady named Leeann who had a 24 year old son with CHF. I haven't heard from her in awhile and hope all goes well for her and her son. Hang in there with your loved ones and thanks for being there for us, Jon.

Jack's August 2 reply to Christine's August 1, 1999 - Hello Christine and everybody else, A low carbohydrate diet does not cause a build-up of sodium in your body. Eating and drinking things that have high sodium content does. Four ounces of protein (chicken) has far less sodium than four ounces of carbohydrates in the form of white bread. Prepared or processed food is loaded with sodium and carbohydrates. Protein isn't.

Renee M's August 2 reply to Joy R's July 30, 1999 - Hi Joy, I don't know about anyone else but this hot weather has been really bad for me. When I have to go outside, I can hardly breathe. I live near Chicago and the heat and humidity here has been terrible. I had to go out several days in a row this week, and ended up spending 3 days in bed after that. I really think it's the humidity that does it and I haven't found any solution except to stay indoors in air conditioning. My Dad, who is on dobutamine, can't even go outside at all when the weather is like this. If he does, he starts having breathing problems so bad that he has to increase his oxygen and take nitro. You're not alone with this problem. If anyone out there has any suggestions, I'd love to hear them. Thanks and good luck. Renee M.

Renee M's August 2 reply to Danny's July 30, 1999 - Hi Danny, Regarding your problems with blurred vision, I can't stress enough to get it checked out. Last summer I had a similar problem and just ignored it. I just thought I needed some new glasses. After a fainting spell in Walmart and a week of chest pain, I found out I was diabetic and that was causing my blurred vision. Now that my sugars are under control, I don't have any more blurred vision. It may not be diabetes but blurred vision is not normal under any circumstances. I have had a lot of side effects from different medications in the last 5 years but blurred vision was never one of them, and I've taken a lot of medications. Good luck. Renee M.

Renee M's August 2 reply to Mark S' July 30, 1999 - Hi Mark, I am writing to let you know that I have the same problem with smells. My family has been telling me for years that I'm crazy but I can always smell something when others can't, especially bad odors; anything sharp or acid, and ammonia. My husband is an auto mechanic and all the gas, oil and petroleum products are terrible. I have a lot of allergies and sinus problems but I am not allergic to anything I've described. This "smelly" problem seems to be getting worse the older I get, but the doctors have not found any reason for it. By all means, get it checked out, but you may not be able to change it. I cover my nose a lot with a handkerchief sprayed with cologne. This did not start until I was in my late 30s. I'm now 48. Good luck. Renee.

Cecil, August 2, 1999 - Hi everyone, I went to a rheumatologist last week to see what could be done for my arthritis. I was surprised to find out that it is actually gout caused by taking Lasix. Has anyone else experienced this problem and what have the results been of the meds they prescribed? In addition to all the heart meds, I am now taking allopuronal and a couple of others to fight off inflammation. Naturally, I can't stop the Lasix. Has allopuronal been effective for any of you in reducing the gout? Thanks.

Joe S' August 2 reply to Jill S' July 28, 1999 - Hi, I had a very disconcerting situation this weekend. My wife and I went on a trip to look at some property in the Eastern Sierras. Ninety percent into the trip, my timing belt broke and I was stranded at the 8500 foot elevation for over 4 hours. Fatigue and pounding heart came on very quickly and I was miserable for a day. Surely there must be something that can be done in a situation like that? By the way, I found a place about 55 miles south of Tahoe at 5,000 elevation. We spent 2 nights there because of the car and had almost no problems except some fatigue when walking very far, but that was to be expected until I get acclimatized. Another interesting thing was that I had very little wheezing until I got back to my foggy climate here on the central coast of California. I am thinking a high, dry, smog-free environment would be much better health-wise despite the elevation. Does anyone have any comments on this? Joe S.

Barbara S, August 2, 1999 - Hi, If anyone is still interested in a low carb diet, there is another book to read. It's called the Carbohydrate Addict's diet. It explains the reasons the low carb diet works. It seems that carbohydrates are sugars. The lower consumption of these sugars acts on insulin levels in the body by lowering them. This in turn reduces hunger cravings and carbohydrate cravings. This particular diet asks you to eat a certain way for 2 meals a day. The third meal can contain anything you want, within reason. So, any of you who are tired of just meats may enjoy this diet because at your third meal you can have a potato or a dessert or fruits or candy! I have tried this diet and it really works, providing you follow it. You do seem to be eating more calories during the day but if you cheat and add too many carbs, you can actually gain weight. My opinion is anything in moderation. Try it for awhile and see how you feel.

Jon, August 4, 1999 - Hi, When it rains, it pours! My dog is extremely sick, my forms were broken yesterday, my e-mail was down most of yesterday, my daughter's knee is damaged and Yahoo-geo is driving me nuts, so posts may be a bit off for a day or two yet. Still, I'm breathing and ornery, so life goes on. :-) For all those who wish I'd be more forthcoming with information about Linz, I apologize. She is much better as far as her illness goes. Although it's not beaten yet, it looks as if it might be in a few years, and that's very, very good. So, of course, she damaged something else (her knee) just to keep us busy. <g> Jon.

Joe S' August 4 reply to Renee M's August 2, 1999 - Hi Renee, The reason I'm moving is to get out of the humidity. As soon as I returned on Sunday, my wheezing started back up. Regarding blurred vision, I always found it was related to my blood pressure rising. Regarding smelling things, I don't know if there is a connection with CHF, but for years I smell things others can't but eventually they do also. It seems that all my senses have been heightened. Just a thought. Joe.

Karen K, August 4, 1999 - Hi all, I guess I'm just checking in since I haven't posted for awhile. Also, I'm a bit bummed. After 2 years, I just had another MUGA. I've been feeling quite well this summer and went into that test with a very positive feeling. Unfortunately, my EF has dropped from 38 to 34%. I realize there is supposed to be an 8 point margin of error (in either direction I would assume) but guess I could say the error could have been 2 years ago. I've been on Coreg for 2 years and off Lasix for the past year. I am also taking 150mg of CoQ10 on a daily basis. Would you suggest I increase the CoQ10?
     I don't really understand all of this since I am virtually symptom free. I don't get short of breath. I don't retain fluids although I do religiously take my meds and maintain a low sodium diet. I exercise daily on the treadmill - a mile a day, and lately have been able to do half of that at a 40% incline. My doctor says I shouldn't change anything. I have an appointment with my internist this month as he is the one who treats my heart condition. I'm currently trying to get into a clinical trial for people at high risk for breast cancer since both my mother and sister have had mastectomies. I qualify for the trial but there is question as to whether my cardiomyopathy may disqualify me. My husband is calling me to play Yahtzee with him and his sister, so I must close. I do read every post and appreciate all the information I find. Karen K, diagnosed 1/91, EF 19% which improved to 42% then stabilized at 38% until now at 34%.

Jon's August 4 reply to Karen K's August 4, 1999 - Hi Karen, It's good to hear from you! The 8% margin of error is for echocardiograms; a MUGA should be very accurate. I sympathize about the confusion of CHF as it relates - or doesn't relate - to EF. There was a time when I had an EF in the low teens and functioned extremely well. Now, at 45%, I function rather poorly. My doc says EF is just one of many indicators and I believe him. It may be slightly more important as a clinical indicator than as a measurement of the ability to function in day to day living. After living with CHF for about 5 years, I am convinced that doctors don't know as much about some CHF relationships as patients do. EF vs quality of life is one of the relationships I think is poorly understood. Personally, I think it varies hour to hour and day to day, making it a highly variable measurement and so not as important as might be thought. That's only my personal opinion though, and I ain't no doctor. A trend in EF may be much more important than each individual measurement of it, and trends take time to establish. Also, meds may keep us compensated and thus reduce our visible symptoms a great deal without substantially improving our EF, especially for those not able to take beta-blockers. Jon.

Renee M's August 4 reply to Cecil's August 2, 1999 - Hi Cecil, My father, who has very advanced CHF, had a similar problem with gout. He takes Lasix and zaroxolyn. He used to take allopurinol for it, which worked quite well on the gout, but he began having kidney problems. With no medication for gout, he had some severe flare-ups. He also had a lot of problems taking anti-inflammatory drugs. His doctor put him on 0.6mg colchicine twice a day about 9 months ago. The gout cleared up and he has not had a flare-up since then. It also does not seem to interfere with his heart or kidney function. Maybe this might work for you. I hope this helps. Renee M.

Margie F, August 4, 1999 - Hi, Thanks Jon for the information. I just read something in the paper about the problems potassium could cause but I wanted to tell everyone my good news. After only 2 months, I got my Disability! I received the letter Monday. I was sure that an announcement like that would be accompanied with balloons and a band. <g> I'm so thankful, to God and my doctors. I'm still in the middle of one of my tired spells but this makes it all more bearable. God bless all. Margie F, EF 20, ICD, CHF, age 53.

Janet S, August 4, 1999 - Hi, I have been having a symptom that I can't put a label on. Maybe someone else has experienced it and can tell me what's happening. Sometimes my heart seems to be beating so hard. I check my pulse and it's not especially fast but I can feel every single beat and it just seems to be laboring. I don't feel in pain but I am uncomfortable. Sometimes I notice it after a meal but other times it's just there for no special reason. Supposedly I'm getting along well. I was diagnosed with cardiomyopathy with an EF of 20% but has now gone to 53%. I'm still fatigued though and more than a little discouraged. Could this just be a panic thing?

Sara, August 4, 1999 - Hi everyone, All of you who are bothered by blurred vision; my ophthamologist after extensive studies found that I have deposits in the corneas of my eyes, caused by amiodarone. As soon as l told him of my having blurred vision, he knew what the problem was but throughly checked and I don't need new glasses as I had thought. He said a couple of his patients have the same problem and nothing need to be done and I could stay on amiodarone, but since I was having other side effects like tingling of hands, sun sensitivity, abdominal pains and dry eyes, I should check all this out with my cardiologist, which I will do on the August 20. Good health to all. Stay cool. Sara.

Helen O, August 4, 1999 - Hi all, This is just an update. I saw the transplant people today and they said come back in 6 months. My weight went up 4lbs overnight and that has me concerned. I called my cardiologist and he said not to be too worried and that it could be something I ate or drank yesterday, but if it continues, to call immediately. I see him on August 26, anyway. The transplant people are talking of adding Coumadin to my meds but are going to leave it up to my cardiologist. I'll let you know as things develop. Helen O, age 24, EF 25%.

Grace J, August 4, 1999 - Hi Everyone, I have been growing my hair most of my life and have been plagued by thinning. I thought it might be my heart condition, which is a question I would put forward: Do we all have hair loss? I have traced mine to other factors: the estrogen in ortho-novem (major shed) and the underlying progesterone deficiency (discribed nicely in this month's General Nutrition Center's magazine on pages 26 to 28) which is linked to hair loss and weight gain via the inability to metabolize fat. As concerning ear pain, about twice a month I get a strong, pinching pain in my earlobe. I read in a cardiology book many years ago that "ear pains" are a symptom of heart disease. I hope that helps. Thanks comrades (against fatigue).

Jon, August 5, 1999 - Hi, Just a quick update: Linz's knee has arthritis, so no more cross country running for her. At least she's got her State Finals medal from last year! My doggie is really sick. We're waiting on test results about her. On the bright side, I think I got my Yahoo-geostinkies problem straightened out. :-) Jon.

Will W, August 5, 1999 - Hi everyone, I wish you could all have been at our monthly heart transplant support meeting today. We welcomed back to our midst one of our people who received a transplant in June. He had been in the hospital for 14 months, waiting for a heart. It was a difficult thing to find one for him, as he had a not too common blood type and was a large man. He had some problems after the transplant and went back into the hospital 3 times for different problems that came up. Almost the first thing he said was, "If I had to do it all over again, I would! It is worth it to be home with a well heart." What I want to say is, I feel the same way. It is hard to describe the feeling you have, after being in the hospital waiting for a transplant, knowing the only way you will leave is in a box or with a new heart and a chance to live a life and be productive again. There is nothing like that first breath of fresh air. Thanks for listening and keep the faith. Will W.

Ruthie A, August 5, 1999 - Hi to all, First, thanks to all of you who sent me notes of your thoughts and prayers. The encouragement I received from them all is priceless. I am now home from Club Med but am not really any better, so I am making another 6-hour mad dash to my CHF doc at Vanderbilt Medical Center. We have no idea what to do next but maybe he will. Anyway, please don't forget us in your prayers. In addition to this extra illness, we will have an empty nest in 3 weeks as my son goes off to college. So emotionally, I am in the pits. Ruthie A.

Robin Lynn, August 5, 1999 - Hello Everyone, Thank you Jon, for your e-mails last week; it really helped. About visual problems and Coumadin, my cardiologist put me on it after I had a cath done because I have a lot of arrhythmias and run a risk of blood clots developing in my heart. From day one, I was seeing "floaters." Then on the fouth day I was looking at my daughter, and the floaters, which looked like bubbles, took most of my vision. Of her face, all I could see were her eyes and the rest was bubbles. Then came the most horrifying pains in my head. It turned out that I had a bad reaction to the Coumadin and I was put on 325mg aspirin a day. He doesn't want to try me on another blood thinner and I agree. I would like to let you all know that I have had my first visit with an EP doc. I am currently on an event monitor and he lowered my beta-blocker dose in half so that we can hopefully catch the "attacks" that I have, the ones that send me to the ER. They don't happen as often now because of meds but when they do, they scare me half to death.
     I have never had the smell thing but have somthing else I would like to present to you all. Sometimes, especially when I'm having arrhythmias, there is a tasteless "fume" in my breath. I have mentioned it to my docs but have really gotten no response. It is there when I exhale. The last attack I had, it was there. I couldn't quite get over it by the next day and went on to the ER. As it turned out, my heart enzymes were high. I can't remember the name of the exact one but is something like Tenormone. I was told that it is the one released when there has been damage to the heart. My doc released me and gave me this monitor to wear. Of course everything is just ticking along. The ER staff was shocked to see me leaving the hospital, as they were preparing to admit me. I'm so confused about all this. Does anyone ever have fumes in their breath? Do you know if it is heart-related? Any info on heart enzymes would also be appreciated. God bless you all and please stay out of this heat! Robin Lynn, DCM, CHF, EF 46, age 35.

Betty S, August 5, 1999 - Hi everyone, I have only posted once or twice. I am trying to keep up with 3 busy kids (soccer, Job's Daughters and baseball!) and a full time job. I know eventually that something will have to give but I am not quite ready to cut back, though I spend most of my time exhausted. I see my primary physician this month and my cardiologist at the end of the month. Thanks to this site, I have a whole list of questions and concerns.
     To Janet S, I have the same symptom. Sometimes it happens if I eat a lot. I have learned to monitor how much I eat. Sometimes I can be sitting quietly and my heart feels like it is going to jump out of my chest for no reason. I was going to ask the doctors about it when I go in this month. I also recently picked up the book by Dr. Marc Silver, Success With Heart Failure and it is a great reference. It puts all the technical info into layman's terms. Harold advised me to get it; thanks Harold! All my prayers to the people who visit here. You are all very special. God and his angels are watching over all of us.

Lee R's August 5 reply to Karen K's August 4, 1999 - Hi Karen, It's good to hear from you and please, please, do not be bummed by that MUGA. Jon said it all, but to reinforce, my cardiologist does not put much faith in numbers, but rather in how you feel. I've had the same experience as Jon: a higher EF but not always more strength, although I have to admit while walking is good exercise for me, it has been too hot and I've been swimming a lot in the pool this year and it really has helped. So hey, ignore those numbers and keep up the good work! Bestest, Lee.

Luc D, August 5, 1999 - Dear friends, I just want to say hello to you all on this wonderful site. Most of you will know me; I am Luc from Belgium and I have hypertrophic cardiomyopathy. I'm doing a little bit better lately. Let's hope it will stay like this. The weather is good here in Belgium - it's not so hot like in the USA. I hope you all may get better! For the people who feel really down, know we are here for you and know we are one big family here and we do care about our friends, too! Jon, thanks again my friend, for this wonderful support group!

Susie O, August 5, 1999 - Hi all, I have a question. Recently I have noticed that my fingernails and also my toenails will have a purple look to them down around the cuticle. When I first get up in the morning, they are a pink color like normal but by the time I get home from work at night after 10 hours, they are quite purple. It also depends on what I have tried to get done that day. Does anyone else have this problem and is it something to be concerned about? Thanks Jon, for this site. There is so much info that I've gained from here.

Jon's August 5 reply to Susie O's August 5, 1999 - Hi Susie, I don't know whether it's really serious or not, but I would call my doctor as soon as possible about this if I were you. The purple color, especially after extended activity, could indicate a lack of oxygen making it to your extremities (hands and feet), which could indicate a real problem. Jon.

Jon, August 6, 1999 - Hi everyone, About the FAQ page I said was upcoming, it's not. Sorry, but I only got 4 questions <g>, so there's not much point in making a whole page. I will ask my heart doc those 4 questions though, and e-mail the answers to those who sent them.
     Also, someone wrote me this week about pulmonary hypertension. Try this site: Jon.

Grace J's August 6 reply to Janet S' August 4, 1999 - Hi Janet, I get the poundings after consuming a certain amount of carbohydrates, which may be caused by excess insulin. That is why I limit carbs. It isn't panic, just consider what you are eating. There is controversy over the Atkins' diet, but I needed to evaluate my eating habits from that perspective. Best wishes.

Linda O, August 6, 1999 - Hi, I wondered if anyone out there has had problems with recurrent urinary tract infections or blood in their urine. I can't seem to clear it up and am wondering if the trial I am in could have something to with it. It is amiodarone versus placebo. I really don't have many symptoms but I do have the dry eyes and stomach aches and pains, and now the urinary tract infections. I will see what the urologist says again on August 24. Linda O, age59, EF 24.

Jack's August 6 reply to Susie's August 5, 1999 - Hi Susie, If you are on Coumadin, you really should see the doctor. It can cause a problem like that and may cause you to lose your toes. Jack.

Brenda H, August 6, 1999 - Hi all, Jon, I have a question. What you mentioned about potassium levels causing a tingly feeling, I've been off and on - more on - 40mg Lasix without potassium for almost a year. I have had this tingling in my back but my doc says my levels are ok. Could some people not get potassium loss from Lasix? It's weird that everyone says you have too take it if you're on Lasix, but my doc doesn't think so. I used to call those tired spells energy hangovers. It seems I too have been very tired lately but I don't think I have overdone it at all. I worry my EF has gone down. I want to increase my Coreg but I don't want to be more tired. God bless, and I hope Linz and doggie are ok.

Jon's August 6 reply to Brenda H's August 6, 1999 - Hi Brenda, The feeling a person with potassium problems might get that is of something "crawling" on their skin, but in a big, persistent way. Tingling is more likely to be a blood flow problem, which I think all of us get at one time or another to some degree. If it bothers you, or if it gets worse, be sure to contact your doctor about it. People on Lasix do not always need potassium supplements, especially if on a low Lasix dose, which 40mg daily is. :-) The important thing is to get regular blood tests to see whether or not you need potassium supplements. Every 3 months is standard, with extra tests when you start a new med or change the dose of a med you are already on. Last but not least, certain other drugs are called "potassium-sparing" and they actually cause your body to retain potassium. If you are taking some of these, they may offset your potassium loss from Lasix. These drugs include spironolactone (Aldactone) and ACE inhibitors. Jon.

Danny S' August 6 reply to Margie F's August 4, 1999 - Hi Margie, I am glad for you gettng your SSD so soon. I have been waiting now for 7 months and I have been out of work for a year. My doctor tells me not to worry about things yet it's hard not to worry, but I am very glad for you. Even so, to be honest, when I read your post of 2 months, it really depressed me. I have cardiomyopathy with pulmonary hypertension, and atrial fibrillation with high blood pressure. God knows my needs and He has never let me down. It just has to be in His time and not mine. I'm very glad for you! Dan. DLS50@WebTv.Net

Brenda H's August 6 reply to Will W's's August 5, 1999 - Hi Will, Thank you for your words of encouragement about heart transplant. It means so much to us who may need one in the future. God bless, Brenda H, EF 25%.

Robin W, August 6, 1999 - Hi all, I hope everyone is feeling well and dealing with the oppressive heat and drought here on the East coast. It has really been a terrible summer for all of those suffering from heart and breathing related illnesses, but Fall is just around the corner, right? I just wanted to update everyone and let you know how I'm doing. It's been 4 weeks now since my transplant and I'm doing remarkably well. I live in a constant state of amazement as every day is better than the day before. If I knew I would feel this good, I would have ran to the OR! There are a lot of pills to deal with but I dealt with those before, they were just different ones. I'm on prednisone once again, which for me is the worst, as I swell up, especially in my face, neck and stomach but if this is the worst thing that happens, I'll be thrilled. The good news is the prednisone tapers and possibly gets cut out all together. I'm crossing my fingers on that one.
     My friend Jeff, who was also waiting for transplant, got his heart on July 23 and is doing fine as well. I had my last weekly biopsy done on Thursday and now I go to every other week. Yea! They really are a piece of cake. This week, for the first time, I did the biopsy without sedation. I was really surprised how easy it was. The only discomfort was the numbing with lidocane and that only burns for a second. Well, I think I've taken up enough space. I'm going back to read all of your posts now. I've really not been on the computer much and need to get back into the swing of things. I've been too busy running around New York City finding out all the things I've been missing for the past 3 years. Talk to you all soon. Robin W.

Tom S' August 6 reply to Susie O's August 5, 1999 - Hi, I have a similar problem and can only guess it is heart/oxygen related. I also have a definite horizontal depression in my left thumbnail, which didn't occur until I had a serious CHF crisis. Some medical folks claim they can tell a lot about your overall condition from the appearance of your fingernails and coloration under them. Personally, I would rather read tea leaves or tarot cards.

Carolyn B, August 6, 1999 - Hi, I recently recall a discussion regarding weightlifting and cardiac disease but I need more information. I have a daughter age 13, who has been restricted from it. It makes sense but I would like input from you.

Rick M's August 6 reply to Brenda H's August 6, 1999 - Hi, My cardiologist added Aldactone to my meds as of a week ago Wednesday. Four days after that, I had lost 4 pounds. My doctor told me to cut back my potassium to every other day and yesterday I had a blood test. At today's visit to my cardiologist's office, we went over the test results and he cut out my second Lasix, as well as all potassium. By adding Aldactone to my twice-a-day Lasix regimen, I was bordering on being dehydrated. So, as Jon said, watch your potassium levels when you get two different diuretics working. It's very personal in every patient.

Jon's August 6 reply to Janet S' August 4, 1999 - Hi Janet, I'm gonna be slow answering people for awhile, but I'll try to be as timely as possible. :-) I think of forceful heart beats as palpitations. It can even feel like your heart has "leapt into your throat." I got them a lot when I was having heart rhythm problems but occasionally, I get them by themselves. Personally, I think anyone who gets them should have the matter thoroughly checked out by their CHF cardiologist just in case a rhythm disturbance is the cause, but they are part and parcel of CHF for many of us. We learn to put up with them and only worry if they change all of a sudden. Jon.

Jon, August 9, 1999 - Hi everyone, Posts will go up soon. I've had a couple of rough days in a row but am somewhat better today and so is my dawg. :-) Please note: I am changing site search engines. The owner of AtomZ, Mike Thompson, has kindly offered to allow me to use his engine even though my site does not qualify. This allows "sections" to be searched. For instance, from the Who's Who page, you can now choose to search only the bios! I am working on making all my search boxes offer that option as well as an Archives-only option. A big thanks to AtomZ! Jon.

Brenda H's August 9 reply to Jon's August 6, 1999 - Hi Jon, Yes, that's it! I've tried to explain it to my doctors but they just shrug it off. The feeling I get in my back is like a crawling and it's annoying. I feel like, if a doctor operated on my back, they could open it up and see something there. Weird, huh?! Well anyway, I will mention it to my doctor next week. I did have a blood test about 2 months ago and I'm ok as far as levels go. I have had this feeling in my back ever since being diagnosed, it seems. This weather we are having sure is weird; thunder and lightening for 4 days now, It's scary! I guess it's better then heat, though. I hope everyone is doing ok. If anyone else has these feelings, please let me know. Thanks, Brenda H, EF 25%.

Dee K's August 9 reply to Susie O's August 5, 1999 - Hi Susie, The dark color under your fingernails shows low oxygen levels. The oxi-pulse monitor that the doctors check the oxygen in your blood with, reads the color under your nails. Every time I go to the lung doc, they put this little gadget on my finger. I had to find out what and why. It shows your pulse and your oxygen saturation. The darker the color, the lower the saturation. I'd have it checked by your doctor, as Tom suggested. God bless. Dee.

Margie F's August 9 reply to Dan's August 5, 1999 - Hi Dan, I hope you don't have much longer to wait. My doctors were totally behind me. I'm sure that helped tremendously. I know my test results from when I was in the hospital last fall were pretty bad before I had my ICD put in. My prayers are with you. Good luck. Margie F.

Pat D's August 9 reply to Dan's August 6, 1999 - Hi, Danny, I also have secondary pulmonary hypertension. There is a web site called The Pulmonary Hypertension Association on the Internet; Jon put the address for it in a post above yours. I'm also a member of that site because of my pulmonary hypertension. Many, many people there have problems with obtaining SS and they contact an organization called ACCESS, that is provide by Olsten Pharmaceuticals, who in turn manufactures Flolan, a treatment for PH. You should visit the site and read the message board. You can find out how to contact ACCESS. I know they've helped a lot of people with their SS problems. Pat.

Kim S, August 9, 1999 - Hi everyone, Can anyone tell me exactly what "fractional shortening" is and how is compares to ejection fraction? I'm not having much luck finding anything on the Internet. Thanks.
Jon's Note: See this post

Carolyn H's August 9 reply to Linda O's August 6, 1999 - Hi Linda, My nurse practioner Wilma told me that I have recurrent urinary tract infections because of the Lasix and other meds I am on. I drink lots of water, one cup of coffee per day, and I don't drink carbonated beverages. I think I will cut out the coffee and see if that helps.
Jon's Note: Lots of water and Lasix, too? <g> ;-)

Julie, August 9, 1999 - Hi, I wrote about about a month ago because I was very depressed. The responses I received were tremendous and I thank the Lord for this Website and Jon's committment to it and us. My cardiologist put me on 50mg of Zoloft daily and I feel like a new person! I almost feel like my old self and that in itself is a miracle. I go for another echo next Friday and I'm hoping there will be an improvement in my EF. I've been on 25mg Coreg twice daily now for a little over 2 months. Is that long enough to notice an improvement? So far, the doctors don't think surgery is an option for me (I've had 2 heart attacks). I had a thallium scan in February and it showed that surgery wasn't viable in my case. If and when there is an improvement, I may be able to have some surgery. It's difficult to know the blockage is still there and my risk for another MI is high. Also, I'm reading Dean Ornish's book on heart disease reversal. Has anyone tried his program?

Bob P, August 9, 1999 - Hi, I've been feeling weak, breathless and shaky recently. I've now been on monopril and furosemide since being diagnosed with CHF in April, and these symptoms seem to be worse. What is your experience with these meds? What have you found to be the most effective treatment? Which treatments, hospitals or physicians have had success in dealing with your CHF?

Jon's August 9 reply to Bob P's August 9, 1999 - Hi Bob, This will vary from person to person. I have found ACE inhibitors to be very effective and furosemide (generic Lasix) works well for me also. I have been on Vasotec, up to 40mg twice a day, and am now on 40mg monopril once a day. Still, 2 other drugs - Lanoxin (digoxin) and a beta-blocker like Coreg are considered part of a well-rounded treatment schedule for CHF these days. See New CHF Meds for more. You definitely need a CHF specialist to effectively treat you for your heart failure. See The Manual for more. Jon.

Rhonda, August 9, 1999 - Hi, I am having trouble with irregular heart beats. It seems when I am sitting or laying down, my heart skips a beat. I can feel them coming on because just before it skips a beat, I have flutters. I didn't have them as much a year ago but now it seems to be there all the time. Heart trouble does run in my family. I would like to hear from you. Thank you. Rhonda.

Robin Lynn, August 9, 1999 - Three Trees:

    When the first tree arrived at the carpenter's, he was made into a feed box for animals. He was then placed in a barn and filled with hay. This was not at all what he had prayed for. The second tree was cut and made into a small fishing boat. His dreams of being a mighty ship and carrying kings had come to an end. The third tree was cut into large pieces and left alone in the dark.
     The years went by, and the trees forgot about their dreams. Then one day, a man and woman came to the barn. She gave birth and they placed the baby in the hay in the feed box that was made from the first tree. The man wished that he could have made a crib for the baby, but this manger would have to do. The tree could feel the importance of this event and knew that it had held the greatest treasure of all time. Years later, a group of men got in the fishing boat made from the second tree. One of them was tired and went to sleep. While they were out on the water, a great storm arose and the tree didn't think it was strong enough to keep the men safe. The men woke the sleeping man, and he stood and said "peace" and the storm stopped. At this time, the tree knew that it had carried the king of Kings in its boat. Finally, someone came and got the third tree. It was carried through the streets as the people mocked the man who was carrying it. When they came to a stop, the man was nailed to the tree and raised in the air to die at the top of a hill. When Sunday came, the tree came tor ealize that it was strong enough to stand at the top of the hill and be as close to God as was possible, because Jesus had been crucified on it.
     The moral of this story is that when things don't seem to be going your way, always know that God has a plan for you. If you place your trust in Him, He will give you great gifts. Each of the trees got what they wanted, just not in the way they had imagined. We don't always know what God's plans are for us. We just know that His ways are not our ways, but His ways are always best.

Linda Hoke, August 10, 1999 - Hi, Volunters needed. I am Linda Hoke, RN, MSN, CCRN, a clinical nurse specialist at the Hospital of the University of Pennsylvania, Philadelphia; and a PhD student at Temple University, Philadelphia. I want to evaluate the importance of daily weights in effective management of heart failure and the relative value of a new scale. I am looking for volunters to participate in the study by completing 2 questionnaires. The entire process can be completed in 5 minutes. If you are interested, please e-mail me so I can send you the scale.

Danny S, August 10, 1999 - Hello everyone, I don't know how many of you suffer from atrial fibrillation as I do, but I'd like to share something. When I get a-fib in a strong way, I find that taking a hot shower helps, if you slowly switch from hot water to cooler or even cold water. To me it seems to jolt my system and I go back into synch. This probably only works if you go in and out of a-fib. I hope this helps convert some of you. God bless. Dan. DLS50@WebTv.Net

Pat L's August 10 reply to Carolyn H's August 9, 1999 - Hi Carolyn, My internist advised me to drink lots of water every day while taking Lasix to help "flush out the kidneys" and prevent any urinary tract infections or other kidney problems. This was contrary to what I believed but I usually do it, with many extra trips to the bathroom. She advised this after blood work showed my BUN and Creatinine levels were sky-high. At first, she thought kidney failure, until I told her I was limiting my fluid intake to 36 to 40 ounces a day. She has occasionally told me things my cardiologist didn't bother to tell me. Pat L.

Jon's August 10 reply to Pat L's August 10, 1999 - Hi Pat, I am not a doctor. Still, I would seriously question any doctor who told me to drink lots of water and take a diuretic, especially a loop diuretic like Lasix. At 36 ounces of fluid a day, you may well have been getting dehydrated, prompting your doctor to tell you to increase your water intake. The usual fluid intake restriction is 2 liters, not one. But honestly, if my doc told me to drink "lots" of water and still had me taking a med that is specifically designed to remove water from my system, I'd look for another doctor! Jon.

Susie's August 10 reply to Dee K's August 9, 1999 - Hi, Thanks for the info, Dee. I spent Sunday to Monday in the hospital because of chest pain. My oxygen levels were in the 80s to low 90s range, I think. What is normal for this, do you know? No one mentioned that my nail color looked funny to them so maybe it's just my imagination but I will see my cardiologist Thursday and I will ask him if they seem discolored to him. The test showed that the pain was not coming from the heart. They think the throat infection I have been taking amoxicillin for may have been a viral infection that caused an infection in the sac around my lungs. The doctor said that could mimic heart pain so I was really happy it was not my heart.

Jon, August 11, 1999 - Hi everyone, An update on Linz: knee is much improved. Update on dawg: much improved - obviously Jesus loves dawgs too. Update on Jon: feeling lousy - back later. 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.

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