The paperwork never ends The Archives
September 16-31, 2001 Archive Index

Herbert LaJoie 9-17     difficult veins & diabetes questions
Roger 9-17     never give up!
Cheri S 9-17     stuck in weight-loss plan, seek advice
Dave's 9-17 reply to Herbert LaJoie's 9-17     difficult veins
Donna E 9-17     how does Toprol-XL compare to Coreg?
Jon 9-18     worm has hit server
Jon 9-19     back - in slow motion <g>
Tracey C 9-19     seek info on "hourglass shaped" ventricle
Ramona 9-19     possible Imdur side effect question
Jon's 9-19 reply to Ramona's 9-19     please call your doctor
Amelia's 9-19 reply to Herbert LaJoie's 9-17     difficult veins, also memory loss question
Blake's 9-19 reply to Roger's 9-17     heart transplant & taking life for granted
Christine E 9-20     intro, travel questions & more
Jon 9-21     update on this slow site
Lee Rs 9-21 reply to Christine E's 9-20     PVCs, arrhythmia links & more
Stella 9-21     intro
Jeanette 9-21     has anyone heard from Barb LS?
Vickie 9-21     seek others with hypertrophic cardiomyopathy
Jack D's 9-21 reply to Jon's 9-21     slooooowness
Donna E's 9-21 reply to Jon's 9-21     everyone here is great!
Maree's 9-22 reply to Vickie's 9-21     hypertrophic cardiomyopathy experience
Ruthie A 9-22     seek help with diabetic/CHF diet
Joe S' 9-24 reply to Ruthie A's 9-22     diet is sure hard to follow
Mae 9-24     have serious diatolic dysfunction, seek advice
Brenda G 9-24     a-fib questions
Joyce 9-24     difficulty with arms over head question
Sheryl C's 9-24 reply to Ruthie A's 9-22     difficult diets
Herbert's 9-25 reply to Ruthie A's 9-22     coping with CHF and diabetes
Dorothy's 9-25 reply to Joyce's 9-24     similar experience
Dorothy's 9-25 reply to Brenda G's 9-24     a-fib and CHF experience
Claire's 9-25 reply to Joyce's 9-24     similar experience
Larry's 9-26 reply to Joyce's 9-24     see your cardiologist
Pat M's 9-26 reply to Mae's 9-24     similar experience
Bill B 9-27     prayer request, Disability hearing
Joe S 9-27     stick to the program - it can work
Ben 9-27     getting better and thanks
Herbert's 9-28 reply to Joe S' 9-27     sounds good
Larry's 9-28 reply to Bill B's 9-27     SSD last resorts
Jon 9-29     slow message boards, new pages
Kim Greene 9-29     seek advice about cardiomyopathy

Herbert LaJoie, September 17, 2001 - Hi, I have 3 big questions for everybody. As I get my blood tested every 3 months, I have noticed a radical change in them being able to find some place to stick me. It seems that they can't find a vein in my arm anymore and have a hard time finding one in the back of my hands. Besides CHF I also developed iabetes about a year ago. The question is, what's going on with the lack of prominent veins like I used to have?
     Does anyone know of a good diabetes web site comparable to what we have here for CHF at Jon's Place? I forgot what question number 3 was. This happens a lot. Till next time.

Roger, September 17, 2001 - Hi Jon, Roger is still kicking; Sorry for not dropping in for the last year. I just wanted to tell everyone again that you can get better! Have faith in yourself. Know your body and how your meds affect you. Be sure you understand everything the doc tells you. Make him tell you what it means if you don't understand. Do your Intenet research on your condition and meds, and take questions to the doc. This life belongs to you and the ones you love, and to those that love you. Most of all, never give up hope, laughter, love of life, and love of family. Bless all!

Cheri S, September 17, 2001 - Hello to everyone, I have a question I hope someone can answer for me. Since my heart attack last October, I have lost a total of 110 pounds, but I am stuck! I haven't been able to lose even one pound in the last 2 months. Does anyone have any ideas that will get me losing again? I would like to lose about 75 more pounds. Any suggestions would be greatly appreciated. Thanks, Cheri S.

Dave's September 17 reply to Herbert LaJoie's September 17, 2001 - Hi Herbert, When your veins are poked time after time, they tend to scar and then when the needle hits them they roll off and the tech cannot find them. Mine are hard to hit too, Dave.

Donna E, September 17, 2001 - Hi all, Maybe I should introduce myself first. I have been lurking here and reading posts for a little over 2 years now. My name is Donna. I had a heart attack 2/16/99 followed by a brain stem stroke and a bleed in my brain. I had two craniotomies - they both saved my life. From that heart attack I went into CHF and almost died. My EF was 35% at the time I was released from the hospital (I spent 30 days there).
     This weekend I had some problems with chest pain and breathing so I called the doctor this morning and he saw me this afternoon. He put me on 25mg Toprol-XL and 20mg Lasix, along with the other medications I already take. My question is, how does this beta-blocker compare to Coreg? I see so many of you take Coreg. Should I ask my doctor to switch me to that one? Thanks Jon, for such a great site. It really has help me sooooo much, Donna E.

Jon, September 18, 2001 - Hi everyone, A worm has pretty much strangled my server for now. Until my web host can overcome this attack, I have no jonsplace e-mail. Sorry, it may be a day or two. I am using the time, however, to finally do a much needed rewrite/update on my devices page, which is being split into 4 pages, one for each type device, with much better information. Jon.

Jon, September 19, 2001 - Hi everyone, Well, I have my e-mail back - in slow motion. <g> Let me know if your posts or e-mails to me are still bouncing - please.
     By the bye, I e-mailed a site over a week ago that was mentioned here awhile back, called Spotlight Health, but never received an answer. I guess they aren't feedback-oriented.Jon.

Tracey C, September 19, 2001 - Hi everyone, I posted a question last week regarding "bowing" of the heart wall. On the echo report it states "hourglass shaped" left ventricle. I can't find any information on the cause of this. If anyone has heard of this, please let me know. Thank you.

Ramona, September 19, 2001 - Hi, I went to the doctor with bronchitis and came out with IDCM! What a birthday present. Seven weeks later, they put in a stent for an 80% blockage during a cardiac cath procedure, leaving a 50% blockage for us to play with for now.
     I am now on 80mg Accupril BID 50mg Cozaar, 20mg Lasix BID, and he just started me on Imdur because I was having bad headaches using nitro patches. Since starting Imdur, I have been experiencing a mild headache but also have aching and a feeling of heaviness in the muscles of the undersides of my arms. I haven't found any muscle problems like this on the list of side effects. Has anyone else felt this, or is it time for me to call the doctor?

Jon's September 19 reply to Ramona's September 19, 2001 - Hi Ramona, This could be a side effect of Imdur but please call your doctor about it. If you are taking a cholesterol-lowering drug as well, please call your doctor immediately. Better safe than sorry, Jon.

Amelia's September 19 reply to Herbert LaJoie's September 17, 2001 - Hi, I have to get my blood drawn every week and I have the same problem. My veins are very thin and they roll. The valves are shot so it's pretty nerve wracking. I asked the tech if they could start using the veins in my feet and she said any place other then hands and arms halfway above the elbow would have to be approved by the doctor. Now they will start using the inside of my wrist and then from there we will see.
     I have read lots of posts regarding loss of memory, but can't remember when or what caused it. I am on amiodarone, Lasix, Vasotec, and Coumadin. Are any of these drugs causing this problem? It is getting worse and is very upsetting. I will call someone but then forget what I called for; I get ready to say something and again forget what i was goign to say; get up to do something and forget what it is. When I hear the news I understand all that is said but then can't retain it to repeat to someone else. I never had this problem before and have been on these meds since May for heart failure. I was just taken off amiodarone because it was causing lots of side effects and will be put on another med next week.
     Any help would be appreciated. Thanks, and the best to all, Amelia.

Blake's September 19 reply to Roger's September 17, 2001 - Hi, "Never give up" - If it were not for that, I would not be alive today. I also have not visited the posts very much lately and that is my loss. I had a heart transplant in August of 2001, and this site was a vital part of my recovery. I could ask questions about anything here. I always got a response from someone. I have never posted and not gotten a response.
     I have lately realized that I have been taking life for granted again. I should not have that attitude at all. One other saying that helped me was the saying, "It could be worse." That is what got me through, even when they told me they did not expect me to make it through the weekend.
     I have missed the interaction that comes along with this page and I will be around more. If anyone has any questions about transplant, please e-mail me or post. I will help if I can. Thanks for letting me ramble and God bless, Blake.

Christine E, September 20, 2001 - Hi everyone, This is my first post. I am a 33 year old mother of 3, and was just diagnosed with CHF two weeks ago. Needless to say, it came as a bit of a shock; Especially since apart from fatigue, I feel fine with no SOB and very little edema. I have had arrythmia, which actually led to the diagnosis. My EF is currently 20%, which I understand is quite low.
     The cardiologist at Toronto General has prescribed an ACE Inhibitor as well as Coumadin, since they also found a clot in my heart, and will start a beta-blocker once I am up to my correct dose of Altace. Currently I do not require a water pill. While my CHF is considered idiopathic, they think it may have been from one of my pregnancies, and my mother also has this. She was diagnosed 8 years ago and it is being attributed to a virus. Does anyone know of genetics playing a role in this?
     Also, I am wondering if anyone has advice on travelling? Before all this happened, I had booked a trip to Jamaica to attend my brother's wedding. I have asked my cardiologist and she strongly suggests cancelling based on my inability to get insurance. Has anyone else had to deal with this?
     Jon, I have been very appreciative of this site since I was very overwhelmed with info when I was diagnosed. Your site has certainly helped me! Thanks, Christine.

Jon, September 21, 2001 - Hi everyone, I am sorry things have not worked well around here lately. I have taken the only step I can : I have begun the process of changing web hosts again to a host with more a powerful setup. I hope this will eliminate the off and on dead e-mail address and posting situation, as well as keep my pages up and running more often. It will not change any of the page Urls or anything you will notice except hopefully, the site will function properly again. Thanks for your patience. The move will put an owchie on my wallet and deprive us of one of our ISPs, but it's something we have decided we need to do, and can handle. :-) Jon.

Lee R's September 21 reply to Christine E's September 20, 2001 - Hi Christine, I really don't know what to say about the traveling, but was hoping that the arrhythmia has been identified and is under control. Many of us have PVCs which are for the most part harmless, but a bit disconcerting. You might want to read up on arrhythmias at Jon's, The American Heart Association, or Take care, Lee R.

Stella, September 21, 2001 - Hello, I am 29 years old. I was diagnosed last year with mitral regurgitation. After awhile I found out that I also had tricuspid regurgitation. Finally I understood that my condition was progressive and I visited my doctor again and I finally found out that I have dilated cardiomyopathy. I try to manage my stress and I do not give up hope. I have studied psychology at the Univercity of Athens and that helps me regard my condition in a different way.

Jeanette, September 21, 2001 - Hi all, I hope all are doing well. I have been trying to reach Barb LS Severino but with no avail. Has anyone heard from her lately? I am worried about her and am hoping she is okay. If anyone has any info on her please e-mail me. It has been 3 months since I last heard from her. Thanks. I am praying for us all! Peace, Jeanette.

Vickie, September 21, 2001 - Hi, I have written a couple of times before. I realize that this is primarily a CHF site, but I have not found a site dealing with HCM (hypertrophic cardiomyopathy) that is as informative or as well-maintained as this one. For anyone who has this disease, I am looking for some advice.
     I was diagnosed last year, with my main symptom being severe chest pain with minimal exertion. I am currently on 100mg Atenolol and 600mg Norpace per day. My chest pain has decreased but I still get it occasionally and I am terribly short of breath with very little effort. I am wondering if this is as good as it's going to get. Surgery and alcohol ablation scare me but I have not ruled these out completely. Does anyone have any experiences with either of these for HCM or have you had a pacemaker for the same condition?
     I have 3 children under 12 and would like to feel like playing with them. They will all be screened next week. Thank you in advance for any input, advice, or suggestions.

Jack D's September 21 reply to Jon's September 21, 2001 - Hey, I think it's nice to know that the the web master isn't the only thing about the web site that is slow! <lol>

Donna E's September 21 reply to Jon's September 21, 2001 - Hi Jon, I for one appreciate all you do to keep this site running smoothly. My many health problems have helped me learn patience so I try not to get impatient about much these days. This site is soooooo helpful it is worth any kind of wait. I get so moved by everyone's willingness to share in order to maybe help someone else. When I put my first post up your site was not working. Many people sent me e-mail direct to answer my question. I was touched that so many people care about someone they don't even know. Donna E.

Maree's September 22 reply to Vickie's September 21, 2001 - Hi Vickie, I was diagonised with hypertrophic cardiomyopathy 3 years ago but local doctors ignored it. Now it's back again, see my earlier post. I have just seen a cardiologist and am awaiting more tests. My chest pain is easing too but my breathlessness is very bad, preventing me from doing almost anything, including walking to my car or into shops. I would be pleased to exchange with you as I find out anything else.
     Isn't this a marvellous site? Does anyone know about ECGs (EKGs)? What does a wavy line Q5 5th quadrant mean? I hope everyone is happy as can be. Maree.

Ruthie A, September 22, 2001 - Hi everyone, I was just diagnosed with diabetes and got the usual lecture about diet and exercise. The exercise is no problem, but the diet is. Does anyone have advice on how to combine a CHF salt- and fluid-restricted diet with a diabetic diet? Is there more to eat than bland chicken breasts? I am pretty discouraged since I have so much to cope with these days. Adding all the diabetic stuff to it all is causing more than its share of consternation, Ruthie A.

Joe S' September 24 reply to Ruthie A's September 22, 2001 - Tell me about it, Ruthie. First they tell me I can't eat salt, then sugar, and on top of the food allergies I have I can't seem to eat anything. At least my cholesterol is low and my arteries are clear or I would starve to death. I can eat eggs and red meat, however in 6 months of doing that my cholesterol has gone up. I guess now I eat oatmeal and chicken breasts again.
     The biggest problem I have had recently is that I bought some breath mints I thought were sugar free and when I called Hershey, the second ingredient was alcohol sugar. I do find that eating right is worth it though, because I feel so much better. Keep up the faith and things will work out, Joe S.

Mae, September 24, 2001 - Hi, I am looking to discuss with someone a cardiomyopathy that is diastolic in nature. Although my heart pumps inadequately, my EF is still 40% my problem is that my heart does not relax. I had a low result of 11.5% on my cardiopulmonary stress test (Vo2max), which the doctor said is below the criteria for transplant (which is 14%).
     I have very little tolerance for physical activity. Showering and blow drying my hair, on days that I can, leaves me only to rest afterwords. I had to leave my job because of a constant need to rest in between everything I do. I have 2 doctors who differ on opinion dramatically. Since I'm not dying, a heart transplant is not necessary at this time. The doctor said I would be trading one set of problems for a whole new set. Is this true?
     Unfortunately, I'm only 39 years old, have 2 kids, and pretty much have no lifestyle. There are no drugs to help a diastolic problem; It seems everything is for a heart that does not contract properly. Is there anyone sharing this type of problem? Any advice to give?
     I try to do some type of exercise daily but I never improve. I am currently taking Toprol-XL, Capoten, Lasix, Aldactone (spironolactone), digoxin (Lanoxin), and Coumadin. I have had 2 heart surgeries, including an endocardial stripping, pacemaker implant, mitral valve repair and replacement. My brother is 43 and is 13 years post-transplant. He runs 10 miles every other day and except for a bout with non-Hodgkins 2 years ago, he is in excellent shape. I am really confused. Although my brother is a wonderful support person and we have the same clinical diagnosis he progressed in a much different manner where a transplant was the only way to save him. Anyone who can lend an ear would be appreciated.

Brenda G, September 24, 2001 - Hi everyone, I have not posted for awhile but have been keeping up with the news. I have had atrial fibrillation that lasted all day. After seeing my PCP I was sent to the accident and emergency department. Thankfully, my heart popped back into sinus (normal) rhythm. I would like to know if this is part of CHF or not. I have never had it last for 12 hours before. Thanks for any info.

Joyce September 24, 2001 - Hi, Any movement of my arms over my head or level with my shoulders tires me out in my chest and upper back. This has been going on for about a year. Lately however, I now have pain in my shoulders. My primary doctor said not to worry about it, but because of the ever-increasing pain, I am. Could this have anything to do with my CHF? I am in an HMO and cannot see my cardiologist without the primary dotor's okay. Please tell me if anyone has experienced this problem.

Sheryl C's September 24 reply to Ruthie A's September 22, 2001 - Hi Ruthie, It is a challenge to find recipes that cover all the restrictions on our diets. At first I just followed the "If it tastes good, spit it out rule." I eliminated most "white foods," pastas, potatoes and rice which need salt anyway. There are some great spicy dishes that make up for lack of salt and carbs. One of my favorites is Tandoori Chicken or shrimp salad. You can find this just about anywhere on the web, but lower or eliminate any salt. Try some of the great salsas on your chicken, like corn or mango. Just plan the fruit into your daily carb intake. Search the web; It is a great resource. Good luck, Sheryl.

Herbert's September 24 reply to Ruthie A's September 22, 2001 - Hi, They said I have diabetes. That was June of 2000. I find that controlling the amount of food I eat really helps my blood sugar test results. I've also learned that a smaller portion without seconds was enough. If I eat a little more than I should, I satisfy the here and now but feel later like I really didn't need to do that, and my blood suar test proves usually that I overdid it.
     Since CHF has changed my life so much - the medications on schedule, trying to eliminate salt from my diet, maintaining stable weight, regularly exercising, avoiding stress, knowing when to rest or keep from overdoing a task, avoiding long naps, letting your schedule go in the toilet and not concerning yourself with it (just keep on trucking) and all that sort of stuff - diabetes is easier to start trying to control, I think.
     I have not learned all I need to know about diabetes but I think I will have a better grip on it than CHF because if I learn the easy ways to control my blood sugar tests and take care of myself I will feel like I am leading a more rewarding life. So would you, I think. Just think of all the people who are diabetic and don't know it yet. We're ahead of the game, I think.

Dorothy's September 25 reply to Joyce's September 24, 2001 - Hi Joyce, A friend had about the same experience. The cause was too much beta-blocker. He had a stent and was given a prescription for 50mg per day. After being hospitalized several times, he is now taking 12.5mg and says this is the best he has felt in 3 or 4 years. I hope this might be helpful to you. Best wishes, Dorothy.

Dorothy's September 25 reply to Brenda G's September 24, 2001 - Hi Brenda, I'm sorry to say I have CHF and experienced atrial fibrillation. I finally had to go to the emergency room and they used an IV to get my heart back into normal rhythm. I think I simply got too hot even though I was not outside. I went to a home building center and noticed it was hot when I went in but did not realize it was that hot! After that experience, I pretty much spent the rest of the summer in my cool home! Best wishes, Dorothy.

Claire's September 25 reply to Joyce's September 24, 2001 - Hi, I get the extreme heaviness and weariness in my arms, shoulders, and chest too, when I have to hold my arms level with or over my head. In fact, those were some of the first symptoms I had just before I was diagnosed with CM and CHF - along with the ever present shortness of breath and fatigue, of course. If I get them now, it is a sign that something is wrong and that my heart is trying to tell me something. I might be overdoing it, getting sick or need a medication change.
     Please don't ignore these symptoms because they are significant ones. Keep bugging your PCP with frequent calls both during and after office hours to refer you to your cardiologist, or call the cardiologist yourself and see if he can at least talk to you on the phone. Until you can see your cardiologist, just take it easier than usual. As Jon says, "Better safe than sorry." Keep us posted. Love and peace to all, Claire E.

Larry's September 26 reply to Joyce's September 24, 2001 - Hi, If you are having pain in your shoulders, see your cardologist. I have had 2 surgeries on both shoulders. In october of 2000 I ignored pain in my shoulder and as it turns out I had a heart attack. I needed 4-way bypass surgery and now have CHF with an EF of 20%. Good luck, Larry.

Pat M's September 26 reply to Mae's September 24, 2001 - Hi Mae, I have hypertensive heart disease, which is also diastolic in nature. Even though my EF is 55%, I am told my heart is getting thick and stiff because it does not relax enough to "re-load." I also know what you mean about taking a shower and blow drying your hair. I usually lie down and fall asleep for about an hour afterward. My heart beats very fast and very forcefully throughout the day and that makes me very tired as well.
     I take hydralazine and isosorbide dinitrate 3 times per day, and Lasix, as well as Lotensin. It was difficult to get my blood pressure down. My PCP had to take me off my beta-blocker metoprolol because for some reason I have side effects that caused my CHF to decompensate and I took on a lot of fluid. I am doing much better now. I still have times during the day when I get very tired and have to rest, usually a half hour after I have taken my medicine. Be encouraged, you are young ! Peace, Pat M.

Bill B, September 27, 2001 - Hi everyone, I hope you are all doing well. SSA has moved my SSD hearing up to October 12 from April of 2002. This is my last shot at it, so if you get a chance please say a little prayer for me. I really need this to happen. Thanks and God bless, Bill B.

Joe S, September 27, 2001 - Hi, Three years ago the docs told me I had 3 months to live, then they told me I had 6 months. Yesterday I got my tests back and my cholesterol, triglycerides, etc,..., were perfectly normal. My arteries are 70% clear. My only problem was that my glucose was 134 with Hemoglobin A1C of 6.8. This shows me that eating right, exercising, and following Jon's rules with CoQ10, etc,..., do work. My heart problem is still there, but in my opinion I am virtually well. I still can't walk uphill or some other things, but I haven't been able to do these things for over 57 years. I'll live with that. Keep the faith, Joe S.

Ben, September 27, 2001 - Hi, I am now ecstatically looking at an echo report that shows after 4 years, my EF has risen from 10% up to 40 to 45%, and my heart has shrunk from 7cm to 6. I knew I was feeling better! This has proven to me the power of prayer (plus good meds and doctors)! I know it isn't my lifestyle, because frankly, that's the pits. I have some new minimal mitral regurgitation and atrial enlargement, but who cares? I know EF doesn't mean everything but I am still happy. Thanks to everybody who has been praying for all of us.

Herbert's September 28 reply to Joe S' September 27, 2001 - Hi Joe, It looks like you got it right, guy. I'm happy for you.

Larry's September 28 reply to Bill B's September 27, 2001 - Hi Bill, You said this is your last shot at SSD. After you have filed your last appeal and been denied, you can sue the SSA. There is really no last shot at SSD - you just have to outlast them. Good luck, Larry.
Jon's note: Such suits are filed in federal court

Jon, September 29, 2001 - Hi everyone, Some people have been worried about me because no mailings are going out and because this message board has been kind of slow lately. I'm fine. :-) I have been updating/creating new device pages and that's why no mailings have been sent. As to message boards, well, they're busy sometimes and slow sometimes. I have no idea why. The forms should be working fine now.
     You can get to the new pages at All are pretty much done except the artificial hearts page, which I haven't started yet. All comments, suggestions, corrections and so on are appreciated! See ya Monday, Jon.

Kim Greene, September 29, 2001 - Hi, I think I have been misdiagnosed. I have CM and over the past few years I have gained 40 lbs despite eating only 200 to 1200 calories a day. I have pain under my rib cage on the right side and have been having problems with mental dullness, numbness around the mouth and fingers, a twisting chest pain, shortness of breath, and haven't been able to sleep flat for a long time.
     I recently had a heart evaluation including a heart cath and was told that I didn't have CHF and that most of my symptoms are attributed to the extra weight I have gained. My EF was 40 to 50%. My cardiologist told me to excercise hard to stimulate my metabolism and said to get used to the chest pain - that it is caused by CM.
     My instincts tell me I have CHF and that I should be on meds. I asked about diuretics and he said I would feel worse on them. Does anyone have any thoughts on this? Are there enough symptoms for my concern?
Jon's note: Have you gotten a second opinion from a cardiologist not affiliated with your other docs?

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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