Bill L 9-1 seek CHFers who keep log of their daily weight
Bill M 9-1 update, heart attack Saturday
Maggie S 9-1 neck, face & head symptoms - anyone else?
Jill S' 9-1 reply to Connie R's 8-30 Coreg, feet swelling
Madelyn J 9-1 heat & BP
Lori P 9-1 Coreg dose & BP question
Jon 9-2 got a new personal doc
Robin Putney 9-2 having surgery with CHF
Allen Cravener 9-2 cardioversion
Pat L's 9-2 reply to Mark N's 8-31 digoxin dose
Sigmund B 9-2 Aldactone trial results out
Don Conley 9-2 this site, importance of attitude & more
Jill S' 9-3 reply to Lori P's 9-1 Coreg dose
Lori Pearson 9-3 seek CHF doctor in mid-Missouri region
Candy P 9-3 Coreg dose, coordinating your docs
Pat L's 9-3 reply to Maggie S' 9-1 similar symptoms
Stephen P's 9-3 reply to Mark N's 8-30 lifestyle & DCM, is there hope? & more
Linda O's 9-3 reply to Robin's 9-2 gallbladder removal surgery & CHF
Jon 9-3 need more low sodium recipes
S N 9-3 seek Aldactone info
Jon's 9-3 reply to S N's 9-3 Aldactone info
Bill M 9-3 upcoming surgery, getting scared
Tom S 9-3 Coumadin & weight gain, getting diabetes
Helen O 9-4 update, new e-mail address
Luc D 9-4 best wishes for Bill M & more
Ginger's 9-4 reply to Candy's 9-3 Celebrex question, vacationing & more
Joy R 9-4 seeking Website for both COPD & CHF together
Joe S R 9-4 update, questions about doctors' comments & treatment
Doralie H's 9-4 reply to Bill M's 9-3 hang in there
Harriet's 9-4 reply to Bill M's 9-3 hang in there, Niaspan questions & more
Sara's 9-4 reply to Sigmund B's 9-2 Aldactone & class 4 CHF
Jon's 9-4 reply to Luc D's 9-4 lots of good people here
Jay Kelly 9-6 what works for me
John Len's 9-6 reply to Luc D's 9-4 people & web sites
Margie F's 9-6 reply to Luc D's 9-4 reading posts, commenting, & to Bill M
Danny S 9-6 anyone else had this BP/near-fainting problem?
Debbie Hoover's 9-6 reply to Pat D's 8-27 thanks for info, fast heart rate, herb
Eris D 9-6 upped Coreg & added Aldactone, side effects, questions
Lydia Moore 9-6 update, questions about swelling & more
Phyllis A's 9-7 reply to Luc D's 9-4 we're still here to help
Phyllis A's 9-7 reply to Joy R's 9-4 dealing with 2 chronic illnesses
Gus R's 9-7 reply to Danny S' 9-6 I have similar episodes & more
Della R's 9-7 reply to Danny S' 9-6 also to Luc D & Bill M
LeeAnn D's 9-7 reply to Luc D's 9-4 stopping by, other sites, & where's Bill D?!
Jon's 9-7 reply to LeeAnn D's 9-7 can you send me an Url?
Joe S' 9-7 reply to Eris D's 9-6 & to Lydia Moore, bloating & edema
Allen Cravener 9-8 2nd cardioversion did not work, getting depressed
Bill D's 9-8 reply to Leeann D's 9-7 hey, I'm still alive!
Jon's 9-8 reply to Bill D's 9-8 AOL frustrates me too & more
Roger G's 9-8 reply to Stephen P's 9 8-3 diet guidelines that helped me, optimism
Roger G's 9-8 reply to Eris D's 9 8-6 extra Lasix to beat the bloat, dose question
Jon's 9-8 reply to Roger G's 9-8 Coreg dose
Lorrie M 9-8 update on Bill M after his bypass surgery
Lori P 9-8 thx, update on doc & more
Heather S' 9-8 reply to Phyllis A's 9-6 CHF/COPD groups possibilities
Jon's 9-8 reply to Heather S' 9-8 finding others in same boat
Tom S' 9-8 reply to Leeann D's 9-7 droopy skin
Ginger's 9-8 reply to Luc D's 9-4 Jon's Place, finding time, e-mail & more
Kim S' 9-8 reply to Jon's 9-7 our PPCM message board
Diane P 9-8 intro, meds, self-pity & more
Brenda H 9-8 update, got my SSD!, medical records question
Luc D's 9-8 reply to Luc D's 9-4 another old-timer checking in & more
Karen K's 9-9 reply to Luc D's 9-4 another old-timer checking in & an update
Roger G 9-9 frustration with AOL
Debbie H 9-9 questions - dehydration, weight loss, taking pulse
Leland Y 9-9 update, there's always hope & more
Sue B's 9-9 reply to Luc D's 9-4 another old-timer checking in & an update
Christy M 9-9 SSD & income questions
Jon's 9-9 reply to Christy M's 9-9 SSD & income info
Ginger's 9-9 reply to Jon's 9-8 people lists, gone for 2 weeks & more
Jack's 9-9 reply to Roger G's 9-8 sugarbuster's diet?
Jana B 9-9 questions - meds & weather with CHF & more
Susan P's 9-9 reply to Luc D's 9-4 another old-timer checking in & an update
Rick M's 9-9 reply to Luc D's 9-4 another old-timer checking in & an update
Jon's 9-9 reply to Ginger's 9-9 good idea! here's the Url for the form
Robin W 9-10 update, heart transplant experience
Roger G's 9-10 reply to Jack's 9-9 sugar in my diet
Al H's 9-10 reply to Luc D's 9-4 another old-timer checking in
Bill M 9-10 hey, I'm back! update & thanks
Joy R 9-10 COPD Urls, Bill M, Bill D, Heather, Debbie
Carolyn H's 9-11 reply to Roger G's 9-10 proteins, sugars & more
Roger G's 9-11 reply to Bill M's 9-10 hope & attitude
Jack's 9-12 reply to Carolyn H's 9-11 I don't think that's right
Lisa H 9-12 cardioversion experience & questions
Jay Kelly 9-12 what should I ask my doctor?
Jennifer 9-13 Rythmol questions & more
Jon's 9-13 reply to Jennifer's 9-13 Rythmol info
Allen Cravener's 9-13 reply to Lisa H's 9-12 cardioversion experience
Luc D's 9-13 reply to Al H's 9-10 thank you, bad days, my children & more
John Len's 9-13 reply to Roger G's 9-11 food & energy
Jon 9-13 the Me Too! page, bios, recipes & to Ginger
Debbie F 9-13 seek cardiologist in Florida
Pat L's 9-14 reply to Debbie F's 9-13 cardiologists in Florida
Wes C 9-14 seek others with ICD
Art D 9-15 old timers, support, Luc D & more
Bill L, September 1, 1999 - Hi everyone, I have been getting a real education reading your posts and seeing heart failure from the patient's perspective. I am a computer/medical researcher at MIT who is working with a group of cardiologists at a local hospital. I'm not an MD, but I've been talking with cardiologists for 20 years. We are in the beginning stages of developing software for helping people manage their heart failure at home. One of the main tools for anticipating problems is watching for trends in daily weights. I am currently trying to get data to help determine the amount of "noise" in daily weight measurements so we will know how to detect the trends (ie, how much is normal variation because of meals or the scale).
We will be doing a study locally, but I'm hoping to get a jump on it and find some folks who have already been collecting daily weights - even better if they have notes about symptoms, changes in meds, and doctor or hospital visits. I mentioned this to Jon and he suggested I post a message. I promise I will keep the data confidential; I'm only concerned with weight changes so if you go through and subtract 20 pounds from every reading, that won't hurt the study. Weights in kilos are great too. Just a note on symptoms - shortness of breath of any form and edema are fairly good markers for fluid accumulation and lightheadedness on standing is a pretty good marker for dehydration, so those are particularly helpful for correlating the weights. As we develop software that might be of use to people in the group, I'll post notes about it (free - your tax dollars at work, if I can convince NIH). I hope to be hearing from you. Bill. email@example.com
Jon's Note: Reply to Bill via his e-mail address, please. Thx.
Bill M, September 1, 1999 - Hello all, Well, since my last post last week, I finally had that echo test. Oh, I also had a heart attack Saturday. My EF is 15%. They have not determined the cause of the attack, nor are they sure if there is anything they can do. I am in the hospital as I post this and am still undergoing tests. They're giving me lots of different medicines at this point. My heart is enlarged. My cardiologist is hoping to find a blockage and my EKG showed a negative Q wave attack. Well, I hope everyone is doing and feeling better today than yesterday. I will update ya as soon as I get some definitive answers. Bill M. firstname.lastname@example.org
Maggie S, September 1, 1999 - Hi Jon and everyone, I have a question. I have been having some different symptoms off and on for the last 4-5 weeks. I feel pressure or fullness in my upper chest and neck. When this happens, I can easily see the pulses in my neck, which I can't otherwise. My face and neck get red and it is a very bothersome feeling. These symptoms are worse when I'm tired and when I lay down. I called my PCP today and she had me come right in. I had an EKG, which was the same as last year, and a chest x-ray, which looked ok. I also had several blood tests, of which the results are not back yet. My physician thought it might be from Coreg. I have been on 25mg twice a day since 7/8 and this started after that. My pulse was 44 and my BP was 100/63 today. She also thought it could possibly be from the arrhythmia. I am going to be connected up to an event recorder on Friday. I was wondering if anyone else out there has experienced these symptoms? My EF is 15-25%. Thanks for this wonderful site. Maggie S. email@example.com
Jill S' September 1 reply to Connie R's August 30, 1999 - Hi Connie, I also have had a great deal of difficulty with Coreg. My BP is naturally low and with the Lasix and Accupril, it is usually around 88/58 or so. I have felt lousy and gained 10 pounds since I started on Coreg; I have no energy and my exercise capabilities have dropped. Mind you, I have been titrated up to 6.25mg at bedtime and 3.25mg at lunch. I had to stop for 3 months last year because my BP dropped to 52/42! My BP is handling it better now, but I still hate it. I am taking it because I am hoping to see my 11 year old graduate from high school or maybe even college. I keep waiting for that magical moment when I suddenly feel good. It hasn't happened yet. By the way, it is not uncommon for people to not have feet swelling. It depends on whether you have right or left heart failure or both. This shouldn't mystify an MD, from what I've read. Jill S, EF 28, DCM, age 48. firstname.lastname@example.org
Madelyn J, September 1, 1999 - Hi, I would like to add to the precautions mentioned regarding heat exposure when your blood pressure is low. I was warned during pregnancies that hot showers in the morning can cause a quick BP drop and possible fall. When I started taking CHF meds that lowered my BP, I noticed I got dizzy in the shower, so now I always use a shower chair. This also prevents the dizzies you could get from standing up after picking up the soap you dropped! I feel kind of silly using the shower chair when I have no leg or back problems, but it's better than getting bruised from a fall. email@example.com
Lori P, September 1, 1999 - Hi all, Oh, it's sooo frustrating. My cardiologist told me that my holter monitor revealed a rapid heartbeat. Duh, that's what I was complaining to him about! He wants me to increase my Coreg from 12.5mg twice a day to 25mg twice a day. I told him that my previous cardiologist (who moved away) had tried me on 18.75mg twice daily and I couldn't tolerate it, but that that was before my mitral valve replacement and maybe my heart is strong enough to take it now. He said, try it anyway. Does Coreg really help reduce tachycardia? I'm afraid it will lower my blood pressure too much. Today it was 104/74 at the doc's office, yet he's doubling my dosage. Does this make sense to anyone? firstname.lastname@example.org
Jon, September 2, 1999 - Hi all, It looks like I have a new doctor, an internist. He spent 40 minutes with me on my first appointment, so at least he takes patients seriously. He's only the second doc on my list of doctors to "try out" too! Jon.
Robin Putney, September 2, 1999 - Hi, I have a question about having surgery when you have CHF. I have to have my gallbladder taken out and my tubes tied. It scares me a lot. Can anyone give me some advice about how to deal with it? I am 29 years old and have 2 kids. I was diagonised in 1995 when I was pregnant with my second child. Any advice would help. RPUTZ70@aol.com
Allen Cravener, September 2, 1999 - Hello everyone, Well, I've been on Pacerone for about a month. Yesterday the doc said that he wants to do another cardioversion. Yuck! He says to come in Friday and he will do it. I'll be checking into the local hospital and keeping my fingers crossed. He says that if it doesn't work, then I will be on Coumadin the rest of my life. If it does work, then he wants to keep me on Pacerone. Well, keep me in your thoughts and prayers. Allen Cravener. email@example.com
Pat L's September 2 reply to Mark N's August 31, 1999 - Hi Mark, With Lanoxin, more is not necessarily better. The nurse at my doc's office said there is a therapeutic range for what she called the "dig" level (dig being digoxin). When I went over that level a few times after going on Coreg, I was mighty sick for a few days until the level was adjusted, by skipping the dose 2 days and then taking alternating doses of 0.25mg and 0.125mg. Pat. firstname.lastname@example.org
Sigmund B, September 2, 1999 - Dear fellow CHFers, The New England Journal of Medicine, which can be accessed free of charge - not for the entire content of its weekly edition, but for the Table of Contents as well as summaries of selected subjects. I've been using it to pick up anything of CHF value. My cardiologist recently told me that something new is coming up this week. I looked it up and found 2 items I think will be of interest. They describe a trial that used the old time diuretic spironolactone, whcih was terminated when the medical people became convinced that the results were positive. I urge you all to read the articles which just appeared in the September 2, volume 341, No. 10 edition. It is at http://www.nejm.org/content/1999/0341/0010/0753.asp. I have my monthly appointment with my cardiologist and will probably add Aldactone to my regimen. I will keep you informed. God bless you all. Sigmund, age 78, double bypass 15 years ago, became CHF about a year ago, I am in the class 4 category. email@example.com
Jon's Note: Simplified version of the trial here
Don Conley, September 2, 1999 - Hi, I want to thank Jon and all of you who have contributed to this forum for being a place I can go so that I don't feel so alone. I was diagnosed with CHF in August of 1998 at age 38, after a lifetime of asymptomatic idiopathic cardiomyopathy. I got a "cold" in March of 1998 that would never go away. Many return visits to the doctor later, I was diagnosed with CHF. I attended one of those CHF clinics put on by the hospital but here I was a 38 year old, otherwise healthy man in a room full of 70+ year old folks. There was nowhere I could go for any kind of support, so I just pretended I wasn't sick. This wasn't hard since I have ignored my heart problems (IHSS and VSD) all my life. In July of 1999, I went in for an angiogram - my third (1963, 1981 and 1999). The results were not great. The doctor told me they would have to get very aggressive with medication. I had my follow-up appointment and an echo 2 weeks later. The doctor said things were worse than they originally thought and my EF was less than 30%.
So I went home to feel sorry for myself. My Mom called to see how I was doing and she gave me the best advice. She said I had every right to feel sorry for myself. What was happening wasn't fair but to get over it! That advice, along with this site, has made me realize that feeling sorry for myself isn't going to solve anything. The best medicine is a positive attitude. I am accepting the fact that I am sick but I am going to control my illness as much as I can, instead of this controlling me. I am taking my meds, exercising per doctor's orders and taking life one glorious day at a time. I know every day that I wake up and look into my wife's eyes and spend time playing with my kids is going to be a wonderful day. Thanks for letting me ramble on. firstname.lastname@example.org
Ranelle, September 2, 1999 - Hi everyone, My cardiologist's office called today asking if I would like to participate in a 3 year research study using Aldactone. It seems that my profile fits in with this study. I don't have many details at this time. I am going in to get more details and talk about it on Wednesday (9/8). It sounds similar to the RALES trial. Do any of you have any suggestions, comments or can you suggest any questions for me to ask when I go in? email@example.com
Jill S' September 3 reply to Lori P's September 1, 1999 - Hi Lori, Coreg comes in 3.25mg strength; why can't you increase it in smaller doses? I would be afraid of just doubling the dose when your BP is low already. Just my 2¢. Jill S, EF 28, DCM. firstname.lastname@example.org
Lori Pearson, September 3, 1999 - Hi all, Any suggestions for cardiologists in the mid-Missouri area? Thank you! email@example.com
Candy P, September 3, 1999 - Hi, I was having severe GI problems with my meds for a long time until I found out which med was causing the problem. It was Coreg. The pharmacy where I bought my meds neglected to advise me about taking the med with food. After I started doing this, the problem stopped. I also was taking Celebrex for my back problem. However, my cardiologist told me he preferred I didn't take that particular medication. When I asked him why, he said he didn't like the result it caused in his patients. Now Celebrex was just approved by the FDA this year so I'm not sure what his reasoning would be but I do trust him as he has prescribed all the most beneficial CHF meds including Aldactone. I cannot it take as I get severe side effects. I read on this site that most everybody has had increases in their Coreg. I have been on the same level since I was first diagnosed with CHF. Except for GI distress, I had no problems with it. If I learned one thing this year, it was to make sure all my doctors are on the same page when prescibing medication. It is very important for the doctors to coordinate their care. GrPota@aol.com
Pat L's September 3 reply to Maggie S' September 1, 1999 - Hi Maggie, I have some of the same symptoms you describe, particularly the face and neck flushing. I think it is from the ACE inhibitor I take. Originally I took Capoten, then Vasotec, now Zestril, at a dose of 20mg a day. I have experienced many episodes of dizziness with my face and neck reddening and sometimes my hands too. The neurologist I was sent to said it was vasovagal episodes, which is why I think it is the ACE inhibitor that does it. Pat L. firstname.lastname@example.org
Stephen Penman's September 3 reply to Mark N's August 30, 1999 - Hi Mark and All, Your post of August 30 sounded a bit like my situation. I'm 35, with 3 kids, ages 11 - 13. I was separated 3 years after a 13-year marriage. I was diagnosed with DCM in January this year and put on Ramipril (ACE inhibitor). I was already taking aspirin on my mother's advice (she also has DCM). At the time I was already trying to give up smoking but still drinking quite heavily. Alcohol was something I had been relying on for some years, even more so since breaking up with my wife.
Even after the diagnosis I was still invincible until May, when I started having nasty episodes of v-tach and numerous other signs that things were going downhill fast. I started on metaprolol, which seemed to take the edge off the fast ones but gave me some other problems. I had so many questions and despite my doctor's good reputation, I couldn't get enough information.
That's when I discovered Jon's Place and also when I finally stopped smoking, drinking, and completely changed my diet. I even had to give up caffeine and go to bed earlier than my kids in order to avoid those episodes. Three months later, my medications seem to be working (I'm now on Coreg instead of metaprolol, to good effect) and I've got energy again. I exercise daily and my EF is back on the way up. I'm feeling better than I've felt for ages.
Without getting too excited because I still have days when I can't lift a finger, I'm hoping I might have stopped the rot before it's too late. Is this real or is it just the Coreg? Perhaps it's the CoQ10 I take or the new diet or the B group and antioxidants I take? Does anyone out there think I might have cause for optimism? I've certainly got rid of the vices for good.
Mark, does this sound anything like your experience of cardiomyopathy? Chances are I have a family predisposition to the disease but brought it on "early" through my lifestyle. My doctor is kind enough not to say it straight out but I am sure enough myself. Like you, I still get lightheaded and sometimes go black in front of my eyes when I get up rapidly. I haven't passed out from it yet though! I'd love to hear from and chat with yourself or others who might have had similar experiences. My grateful thanks to you Jon, and the people who contribute to your site. The information and comfort I got here when I was at my wit's end gave me strength and armed me to get more out of my visits to the almighty specialist. Cheers to all. Stephen. email@example.com
Linda O's September 3 reply to Robin's September 2, 1999 - Hi Robin, I had my gallbladder out last year the new laprascopic way. I was petrified of the anesthetic. It went fine. I was in the hospital connected to my cardiologist's clinic and that relieved me some. She referred me to the surgeon and I liked him. The only problems I had were connected to the bag they use to let the bile drain from. It got twisted in the night and was painful. I didn't ask for a pain pill like I should have either. Once that was out, I whizzed right home, a 2 hour car trip. firstname.lastname@example.org
Jon, September 3, 1999 - Hi everyone, I could use some more of your favorite low sodium recipes for Kitchen Corner. Send me whatever you've got! Jon.
S N, September 3, 1999 - Hi, I have CHF and AF. I was diagnosed about 3 years ago. I am on my fourth cardiologist at this time. He listens better than any of the others. However, I haven't convinced him on Aldactone. I've used Lasix, Demadex and Bumex and still have swollen feet and ankles. I have increased dosages with all of them to no avail. If Aldactone is as great as everybody says, I want some. I would like to hear more and have something to show my doctor. I appreciate anything anyone might be able to tell me. Thanks. email@example.com
Jon's September 3 reply to S N's September 3, 1999 - Hi ?, Welcome to Jon's Place. The Aldactone tremor currently going through the CHF community is a big one but strangely, it isn't because of Aldactone's diuretic properties. All 3 drugs you mentioned are more powerful diuretics than Aldactone. Bumex is very potent and if it isn't doing the trick for you, you may have a real problem. I have found that a low sodium diet makes a world of difference in my swelling or not. Do you restrict your fluid intake? That can really help also. I am on a 2.5 liter restriction that drops to 2 liters when I am swelling at all. It can really improve your quality of life.
Sorry - back to the subject <g> At the low dose of 25mg a day, Aldactone decreases death and hospitalizations for CHFers. You can read about it here. I hope this helps. Don't be a stranger! Jon.
Bill M, September 3, 1999 - Hi, Thanks for listening. I'm having bypass surgery soon; 4 arteries, having blockages of 82, 80, 95 and 100%. My EF was still 16%. I am writing from my hospital bed. While I'm waiting through the weekend, my mind is awash with questions. I want to thank those of you who have written to me with support and encouragement. This has been quite a 2 weeks, with a diagnoisis of asthma that became a sleep disorder to CHF, a doctor's appointment with a cardiologist to a heart attack 2 days later, and now to the hospital 4 days later, awaiting open heart surgery - a quad bypass. The doctor said that since the rest of me is in good working order, I should come out fine but I'm scared. Part of my heart is dead, but they said not to let it bother me, that there is enough good muscle left to have a good life. I think about the meds I will need to take and the changes in my life I will have to adapt to. Again, thanks to all of you for your support and prayers. God willing, I'll yak with ya all Wednesday. Bill M. firstname.lastname@example.org
Tom S, September 3, 1999 - Hi, Well, my registered nutritionist told me flat out there is "sometimes" a connection between Coumadin therapy and an impact upon the individual metabolism. That is to say, it can slow down the metabolism resulting in some weight gain. During this session I was also told of my newest "disease" which is the onset of type 2 diabetes. According to my medical doctor, this type of diabetes is genetic and lays dormant until something sets it off. She said something as simple as a stressful situation and even medications can awaken the potentially devastating disease. email@example.com
Helen O, September 4, 1999 - Hi all, How is everyone? I saw my doc today and was told that the cath showed that I am stable. My EF is 25 to 30%. I see my GP on Tuesday and I am going to ask her to run some blood tests for low-blood sugar, high-blood sugar, and diabetes. My cardiologist also wants to have my thyroid level checked. I have been on the 1500 calorie a day diabetic diet with sodium restrictions for 2 1/2 weeks now. I am gaining weight instead of losing it. My doc seems to think it will be easier to lose the weight when the weather cools down. I hope so. On a brighter note, I have added another e-mail address (this one is Web-based). I'll let you know how the tests come out at my GP's office. firstname.lastname@example.org
Luc D, September 4, 1999 - Dear friends, It's the Luc here from Belgium. I really hope you are all doing better. I'm doing ok. For now, I try to rest more. My children are going to school again and they seem to enjoy the school too, so that's good, isn't it?! I also want to send all the best wishes to our friend and heart patient, Bill M. He's having some tough moments right now with his heart surgery. We used to be a very good group of people who did care for each other. I do hope this will come back! All the older people who were here on this beautiful heart forum are gone. Why? I have to thank our friend Jon for keeping this site alive! Lets be honest, what would we do without this heart forum? I wish you all the best and lots more. Your Belgian friend, Luc. email@example.com
Ginger's September 4 reply to Candy's September 3, 1999 - Hey Candy, If you ever have a chance, ask your cardiologist why no Celebrex. I just started it last month for my lower back problems. The stuff helps but I did read it can make one retain fluid. Maybe that is the answer right there. Anyhow, I just want you all to know I am taking a small vacation from the 17 to the 1st. Tom W will help with any problems with chat wile I am gone, as usual. :-) I am going to Hawaii. If anyone is from there, you can e-mail me about the place if you like. Also I would just like Bill to know our prayers are with you. Stay well, ya all. Hugs, Ginger. firstname.lastname@example.org
Joy R, September 4, 1999 - Hi, It seems I have started something talking about COPD and CHF, and now I am getting requests via e-mail if I know a site that discusses both of these. I don't, but thought maybe someone else did, so I'm asking if anyone knows of one. I even e-mailed Heather but haven't heard back. She is usually up on these things. It's bad enough having heart disease but when combined with pulmonary disease, it is so much worse. I have felt too bad lately to sit at the computer and look so I'm leaving it up to you all. Thanks a bunch and I hope everyone has a well holiday. Joy R. email@example.com
Joe S, September 4, 1999 - Hi, Talk about confusion. I went to the cardiologist yesterday for a final check before I move next week. Since being on this board, I had a ton of questions and the answers were weird. First he said my heart was only slightly worse, yet all he did was listen with a stethescope. My blood pressure was 145/110; again weird. Then he said my EF was 70% and in the next breath he said I would have to have valve replacement in about 5 years. I am beginning to wonder if he made me 100% permantly disabled simply to make sure I got medical. I guess my main question is, can he really tell all this by simply listening to my heart? Doesn't an EF of 70% mean I'm in fairly good shape? Can he really tell this after not seeing me for almost a year? As he was walking out the door, he said I'm going to have to have an echo every year to determine how bad my heart had deteriorated. Anyone have any answers to this stuff? Joe S. JES@StevensonLighting.com
Doralie H's September 4 reply to Bill M's September 3, 1999 - Hi Bill M, My thoughts and prayers go out to you as you wait for your bypass surgery. I have had 2 CABGs done, in 1989 and again in 1998. One of the grafts from last September collapsed but an angioplasty and stent placement was done in July of this year. I have also been diagnosed with CHF, CAD, and am diabetic. I have a feeling we won't be hearing from you too soon, but we'll hear from you again. I am a nurse, married with adult children and 4 wonderful, delightful grandchildren and am 54 years old. God bless you and all of us who survive to see each glorious sunrise and sunset of the days He gives us! firstname.lastname@example.org
Harriet's September 4 reply to Bill M's September 3, 1999 - Hi all, Bill M, I have only half a heart muscle that works too, but it is picking up the slack pretty good, considering. I swim every day and my heart seems to be responding well. Good fortune to you. I do need to ask a question of the rest of you. My cardiologist took me off Lipitor Thursday and started me on Niaspan. Does anyone have any history with this? She said the Niaspan would be much better for my kind of cholesterol problem; low good HDL and very high lipids. Also, she doubled my beta-blocker (40mg 3 times per day) and took away the Zestril so my BP wouldn't get too low. She is concerned about my kidney protection that the Zestril provides, and will most likely add it back to some degree. I'm having rhythm problems. You are all so very important in my prayer life. Have a good day. email@example.com
Sara's September 4 reply to Sigmund B's September 2, 1999 - Hi everyone, After reading the posts on Aldactone, I thought you might be interested to know that my brother-in-law who is class 4 and failed for a heart transplant has been on Aldactone for awhile. He seems to tolerate it but his doctor added Zaroxolyn and I think Lasix with it. He has lost a lot of weight and seems to be skin and bones except for his huge tummy but now with the added drug Zaroxolyn, he has lost a lot of his tummy fluid and has a tad more energy. Best to all. Sara. firstname.lastname@example.org
Jon's September 4 reply to Luc D's September 4, 1999 - Hi Luc, Lots of the "old-timers" still read posts but don't participate much. Several things add to "turnover." First, CHF is progressive and some of the old-timers have died or gotten too sick to participate (a few even got so much better, they didn't stick around!). That isn't what a person likes to hear, but it's true.
Second, people tend to cluster wherever others with the same likes and dislikes hang out. Some people prefer chat rooms and programs like ICQ to message boards and they gravitate to places that emphasize what they like, as do we all.
Third, The Beat Goes On has been around awhile now and some people just get tired of it and move on. And of course, some people detest my rigidity in the way I run the site and decide it's too restrictive for them, so they seek other places to "hang out." Strangely, I've been amazed at how many people have stuck around here for long periods of time! <g>
On the plus side, there have been lots and lots of great people step in here and participate and they keep this a place where you can get an incredible amount of support and information. They are still stepping in here every single day and helping others. To all of them, I say, thank you, Jon.
Jay Kelly, September 6, 1999 - Hi, This concoction has worked very well for me. Here is the list of what I am taking: 20mg Zestril, 12.5mg Coreg twice a day, 0.125mg Lanoxin, a mineral supplement (includes magnesium, calcium, chromium...), a vitamin supplement (includes the Bs and folic acid), 800IU Vitamin E, 150mg CoQ10, 500mg L-Carnitine, garlic with 2500mcg of allicin per tablet, 200mcg Selenium, 1350mg Hawthorn, 25,000IU Beta-carotene. My supplements cost about $85 per month. I only buy deals. If CoQ10 is on sale, I will buy 3 months worth. If you can get good deals on CoQ10 and L-Carnitine, the rest is fairly inexpensive.
My heart was at 25% efficiency, enlarged, and in atrial fibrillation when I walked into an emergency room last July, 1998. A previous doctor diagnosed me with asthma, which led to my prolonging the condition. I had to be converted by shock. Since that time, my heart has reduced to normal size and my efficiency is around 70%. I have had no return of the atrial fibrillation. I feel better now than I have in many years. My cardiologist calls me an extremely lucky man. I will meet with him at the end of the month. Presently I am compiling questions for him in a letter for him to answer at the meeting. It is wise to be proactive with your doctor. After all, it is your life. Most important, be proactive with God. Take care, Jay. email@example.com
John Len's September 6 reply to Luc D's September 4, 1999 - Hi Luc, Jon is right. Some other sites I use do the same. Over time, some wander off and others take their place. A lot of it has to do with the same questions over and over, and they get tired of answering them over and over. The good news is that new approaches brings new ideas and answers, and the forum goes on. John. firstname.lastname@example.org
Margie F's September 6 reply to Luc D's September 4, 1999 - Hi Luc, I'm not sure when Jon's Place started but I've been here way over a year. Usually I just read the posts unless there is something I want to comment about. I'm generally pretty stable so it isn't necessary to grumble about day to day problems that CHF brings. Bill, I hope your surgery turns out fine and you recuperate fast. Prayers are with you. Margie F, EF 20, CHF, HCM, AICD, age 53. MFisher238@aol.com
Jon's Note: The Beat Goes On started April 10, 1997
Danny S, September 6, 1999 - Hello everyone, I would like to share a couple of things, First off my SS was approved! Also, I have been getting weak spells. My wife and I have gone to Wal-Mart twice this weekend and both times I got so weak and started sweating, I was so bad I thought I would go down before I got back to the car. Upon getting home I checked my blood pressure and it was 116/66 and my pulse was 62. My BP stays high, but for some reason I have had it bottom out and I have no idea why. I will run this by my doctor on my next visit! Has anyone out there had this happen? Thank you, Dan. DLS50@WebTv.Net
Debbie Hoover's September 6 reply to Pat D's August 27, 1999 - Thanks Pat, for the information about CoEnzyme10 or whatever it is called! (my short term memory runs out fast <g>) The more I've read on the forum, the more I've realized that the constant fatigue will be a constant factor of my life now. Yukko! But at least it's life, right?! I had taken Siberian Gensing off and on in the past but I was not sure if it would be a good idea to take it now or not. I am predisposed to having really rapid heartbeats. My heart rate ran 110-120 from the time I was 17 years old and no one gave a second thought about what that would do to my heart. In fact, it wasn't until 4 months ago, when my heart rate was 140-150 that anybody started paying attention! It had been running 140+ for over a year and now the docs are chewing me out for not bringing it to their attention; The nerve of the guys! Anyway, thanks for the reply. God bless all of ya here, and a special blessing for Jon! Prayers and love, Debbie H. email@example.com
Eris D, September 6, 1999 - Hi, Since my cardiologist upped my Coreg from 12.5mg twice a day to 12.5mg in the morning and 50mg in the evening, and added 25mg spironolactone, I have felt much worse than before. I have felt tired often in the past but now I have absolutely no energy and my muscles feel very weak. In addition, I am having frequent stomach pains along with diarrhea and gas. Sometimes I feel like I am full in my stomach and even my throat, as if I have eaten too much even when I haven't. Could this be because I am not tolerating the added Coreg? Or related to the spironolactone? For the first time in nearly 2 years, my Coumadin blood levels (INR), which had been just right, were too high and I was told to take less Coumadin. Have any of you experienced similar reactions? I plan to talk to my doctor if I can reach her and perhaps a pharmacist about this after the holiday, but am wondering about the experience of others. firstname.lastname@example.org
Lydia Moore, September 6, 1999 - Hello everyone, I have a question about fluid retention and would appreciate any imput I can get. I take 40mg Lasix twice a day but lately I don't seem to get rid of that much fluid. All the swelling is mostly in my belly, but I can also feel it in my hands. I have that congested feeling in my chest a lot. Is that a sign of too much fluid retention? I hear a lot about people going to the hospital and getting drained. When do you know that is neccessary? Please excuse me but this is all so new to me. My prayers go out to all of you, especially Bill who needs surgery. God bless and better days. Lydia Moore. email@example.com
Phyllis A's September 6 reply to Luc D's September 4, 1999 - Dear Luc my friend, I agree with Jon that we are still here and we still care about each other. I don't know why you would think we didn't. I belong to a couple of chat rooms beside The Beat Goes On. I am in remission from breast cancer, a survivor, and I go back to try and help someone who may now be going through chemo and radiation and surgery as I have. So you see, I spread myself around to help support all that I can, to give back to the Lord for my life, so sweetie, we are still here. God bless us all. firstname.lastname@example.org
Phyllis A's September 6 reply to Joy R's September 4, 1999 - Dear Joy, I also have respiratory problems along with heart disease, CHF and severe asthma; I call it a double bubble. It does make it so very much harder with the CHF. As for me, most times I can't tell if my shortness of breath and chest discomfort is from asthma or the CHF. The symptoms are the same so if I use my inhalers and breathing machine, and that does not work, then I know it is my ticker acting up. I agree it would be nice to find a support group combining both. email@example.com
Gus R's September 7 reply to Danny S' September 6, 1999 - Hi Danny, I have episodes similar to yours. I don't know what the answer to them is, but mine have a pattern that seems the opposite of yours. The pattern of mine is almost always when I go from a cool place into a hot place. In the summer they hit me when I leave a place and go outside into the heat, and especially when I get into a hot car. In the winter they happen when I go from the outside into a heated area. The greater the temperature difference, the more likely I'll have problems. In my case my head also enters into it. When I start getting woozy in public, I worry that I'll get stuck in an ambulance and packed off to club med. That has happened 3 times. I now know that I'll come out of it in a little time, but when one is found sitting on the floor or sidewalk in public, short of breath and barely able to speak, they don't have much time before they get "help." The only advice I can offer is to take a shopping cart in any store that has them, they make good mobile leaning posts. Best wishes, Gus R. firstname.lastname@example.org
Della R's September 7 reply to Danny S' September 6, 1999 - Hi Danny, I have this same thing happen; the weakness and sweating, when my blood sugar drops, as it often does if I get off my schedule, usually on the weekends. Have you had your sugar checked?
Luc, I am not really an old timer (to this site anyway) but I do check in and read the posts every day. I keep pretty stable, overdo probably more than I should but I have always rallied around. I don't post much because there's nothing new for me to tell unless I go into failure and wind up in the hospital, as I did again in March. Every day is a gift from God. Time is so precious. He gives it to us one moment at a time. This thought was posted several weeks ago at our church and I love it and do savor each moment.
Bill M, my prayers are with you. I never had a bypass, just angioplasties. Even so, they give one pause but when I go in there, I sing silently, "Just forget about yourself and concentrate on Him and worship Him, Christ the Lord." It works for me. May God bless! email@example.com
LeeAnn D's September 7 reply to Luc D's September 4, 1999 - Hi everyone, Hey Luc, I love your country! I visited Brugge and Belgium just before I was diagnosed with CHF in Korea last year! I think Brugge is just about the most beautiful city I've ever been in. Anyway, I think I only visit The Beat about 2 times a week now, and I used to read it every day. There's a CHF mom's site I found and we talk about lugging around our babies while having CHF and stuff like that. I too am wondering about some people. Does anyone know what happened to our leaky boat greeter, Billdog? I miss him. I'm saying a special prayer for Bill M today and I hope we hear from him soon! Jon, I'm going to send you my chicken enchiladas and my famous chili recipes that even my salty friends love! Oh yes, I do have a question for anyone (if you're still reading this long post!). After being on diuretics - and everything else - for over a year now, it seems to me that my skin is kind of well, droopy would definitely describe it. Does anyone else think this? LeeAnn in Phoenix, DCM, EF 30, age 38. firstname.lastname@example.org
Jon's September 7 reply to LeeAnn D's September 7, 1999 - Hi Leeann, Can you send me the Url for that CHF moms' site? I might want to add it to my Links page in the support groups section. Look forward to the recipes. Thx, Jon.
Joe S' September 7 reply to Eris D's September 6, 1999 - Hi Eris, and Lydia, I don't know if this will help but I've added Peptic AC to my regular meds and my stomach bloating is almost entirely gone. I'm sort of thinking my bloating was a reaction to some foods and not edema. Joe S. JES@StevensonLighting.com
Allen Cravener, September 8, 1999 - Hi, Well I got my cardioversion. This is the second try and it didn't work. Now I am starting to get depressed. Allen Cravener. email@example.com
Bill D's September 8 reply to Leeann D's September 7, 1999 - Hi Lee Ann, I'm still around, bailing like mad! <g> Barbara PJ was kind enough to tell me you were asking for me. Poor Jon got tired of hearing my welcoming message, over and over and over! So he suggested we do our welcoming by e-mail. Besides, we found that he was e-mailing a much better letter himself. It had links to all the important stuff. I tried e-mailing for a while, but when I found almost half were un-deliverable, I gave up. AOL addresses often get stopped by the AOL Postmaster! Anyway, I still read the posts and stifle myself in my urges to answer. Like Edith Bunker! Bill. Billdog@gate.net
Jon's September 8 reply to Bill's September 8, 1999 - Hiya Bill, I only send the message with all the links when people e-mail me questions that are more easily asnwered by my site already. I get so frustrated with AOL myself that I sometimes want to scream, "Everyone get a real ISP!" <g> I know that ain't gonna happen though, so I stifle on that subject myself! Jon.
Roger G's September 8 reply to Stephan P's September 3, 1999 - Hi Stephen, Keep up the optimism. To me, smiles and belief that the situation can get better has helped. My EF is up from 18 to 35 at the last check 6 months ago. My next echo is soon and I feel good enough for a 45. Coreg, CoQ10, Lanoxin, Vasotec, Lasix, Potassium, E, Siberian ginsing, Sugar Buster's diet, less red meat and many more vegetables and fruit, more cold-water fish like salmon, no white flour, hot peppers, brown rice, brocoli, green tea, grapes, cabbage, cabbage and more cabbage, crushed grain bread - not white bread - no processed food, no pasta in a bag with instant sauce, all homemade from fresh, no white flour - only whole wheat, carrots and beets are bad, oranges are very good, an apple a day, a little red wine (very little) every day, egg whites not yolks, and every now and then a small bowl of godiva ice cream, and did I mention no white flour! firstname.lastname@example.org
Roger G's September 8 reply to Eris D's September 6, 1999 - Hi Eris, I had similar stomach problems along the way to my optimum Coreg dose of 25mg twice a day. I had to double my Lasix to get rid of the bloating.
I just re-read your post; 12.5mg of Coreg in the morning and 50mg in the evening for a total of 62.5mg? Optimum is 50mg total, I think. If it were me, I would check with the doc to be sure he didn't mean for me to be taking 25mg in the morning and 25mg in the evening for a total of 50mg. Roger. email@example.com
Jon's September 8 reply to Roger G's September 8, 1999 - Howdy-doo, Coreg dose is dependent on body weight and what an individual can tolerate. In trials, 50mg twice a day was standard for people who weighed more than 187 pounds. For people under 187 pounds, 25mg twice a day is the usual max. Still, I imagine this will become more flexible and even higher doses may be seen when doctors have become comfortable with the drug and have observed their patients on it over time. Jon.
Lorrie, September 8, 1999 - Hello, My name is Lorrie and I am a friend of Bill M's. I just wanted to let you all know that Bill has had his 5 bypasses. He is doing quite well and will probably be coming off the respirator soon. There were no complications and all went well. He is on a balloon pump for awhile so his heart can take a much needed break but he should come off that soon too. I just wanted to tell you good people how much hope and help you have been to Bill. I happened to stumble upon Jon's site quite by accident after the diagnosis of CHF that Bill received and it has been a source of much comfort to him. Hopefully Bill can talk to you himself in the next week or two. In the meantime, God bless you and thank you. firstname.lastname@example.org
Lori P, September 8, 1999 - Hello everyone, I hope you had a nice holiday weekend. I wanted to thank those of you who wrote with ideas regarding a new cardiologist for me in mid-Missouri. I'd also like to share with you my experience today with my current cardiologist. The doctor that I really liked moved out of state. The one who took over for him is in the process of moving the office to another town in Missouri about 80 miles away from me. On my last visit, he told me to get my Pro-time checked, and instead of the hospital lab faxing him the results, he wanted me to get the results myself and call and leave a message on his old office's answering machine, since the fax would be disconnected while they move. By the way, his new office won't be open for 4 weeks. Well, my INR was low, and I called but the phone has been disconnected too! His new office doesn't have a phone hookup!
So I spent the whole day today calling around, trying to get hold of him or someone else who could advise me as to what I should do for my Coumadin dose. My husband finally talked the hospital operator into paging the doctor on his personal pager for us. When he finally called me back, I explained the situation and told him that I was worried because my INR fell below my "normal" range. He sarcastically asked, "Well, you didn't have a stroke, did you? Just keep the same dose for now and retest in two weeks." So as you can guess, my day tomorrow will be spent searching for a new doctor.
Fortunately, with the help of a lady (from this heart forum) in Jefferson City, I have a couple of ideas of where to call. All the doctors I called today on my own, just randomly out of the phone book, were all booked up through the end of October! Sorry for complaining, just had to tell you all my experience. Take care. email@example.com
Heather S' September 8 reply to Phyllis A's September 6, 1999 - Hi, I wondered if an idea our Aussie lung group are temporarily using until we get a forum would be a good idea for the CHF/COPD puffers and panters in our ranks. There is a page where we can register our "multiple disabilities" at www.chfpatients.com/biosgate2.htm. If we each registered there, we could copy the e-mail addresses and make ourselves up a "group mailing list" just for our heart/lung friends. Even when each mail might be to 20 or 30 people, it feels very intimate and it's both fun and very useful. As Joy rightly pointed out, my replies are erratic due to the time and energy demands of the dreaded rehab <g> but I would be perfectly happy for anyone to e-mail me. In addition, to right-sided heart failure, I have asthma and COPD, and live plugged in to a nifty little 30 foot hose. There are several of us at Jon's Place in the same situation. firstname.lastname@example.org
Jon's September 8 reply to Heather S' September 8, 1999 - Hi Heather and everyone, I have found that having a form to use on pages requesting information dramatically increases the number of participants. If Ginger would rather not mess with a form - they are a pain to write if you've never done one before - I am willing to put up a page as part of Who's Who that would list in one place names, e-mail addresses, geographical location and chronic health conditions for each person wanting to be listed there. I am in no way pushing this since Ginger has a page started, but want to make the offer. I am feeling pretty ambitious lately <g> and also Ginger has her hands full, between taking care of our chat room, her sister being sick and all.
I had hoped having a search function exclusively for Who's Who would help people find people a lot easier but it isn't getting the use I thought it might. Also, new bios just aren't coming in at all. In a search I did for COPD, only you (Heather S) and Bob Himes turned up. I'm sure there are more but I don't have their bios. Jon.
Tom S' September 8 reply to Leeann D's September 7, 1999 - Hi, According to my nurse practicioner daughter, "droopy skin" can be a sign of dehydration or old age, whichever comes first. I also have episodes where I can bunch up the normally tight skin on the back of my hand like a three day old corpse. email@example.com
Ginger's September 8 reply to Luc D's September 4, 1999 - Hi, Just to put my 2¢ in here, I think most of us are still around. I think we go through periods where things in our lives get too hectic to have a lot of time to post. I know that is the case with mine lately, with my sister's illness and planning my trip to take my stepdad home to visit but I think a lot of the people feel like me in that I will always be here at Jon's Place. This place kept me sane when I first found it and the support is wonderful. Also, a lot of us e-mail others when they come here to try to keep Jon's workload down a little. So we are here! :-) Stay well, ya'll. Hugs, Ginger. firstname.lastname@example.org
Kim S' September 8 reply to Jon's September 7, 1999 - Hi Jon, I believe the site that LeeAnn is referring to is our good ole Peripartum Cardiomyopathy Support group message board. We have a great time talking to one another! It is nice to talk to other women with CHF in the midst of lugging around our babies, changing diapers, taking them to the playground, and having them jump all over you when you are on the couch totally exhausted! The site is growing and we have many members.
On a different note, I'm still waiting for a decision to be made concerning my SSD appeal. I was told that they have until October 18 to "deliberate." At that point, it will be 14 months from the time I was diagnosed. I will keep you posted. email@example.com
Jon's Note: Kim's message board is here
Diane P, September 8, 1999 - Hi, I am 51 years old and had my first heart attack 11 years ago. In the last 12 months I have had 2 more heart attacks and I had a quad bypass 4 months ago; Now CHF. My EF is 35%, not bad compared to some of the posters but I feel like yesterday's leftovers. Even with 40mg Lasix twice a day I still have fluid around my middle. I have no energy and a type A personality. My passion is my horses in my backyard, and I don't have the energy to even work with them from the ground. My cardiologists says my EF won't get better but also it won't get worse. Vascotec and Lanoxin are my friends but Monday I have an appointment, so more to come. How does he know it won't get worse? I am having a pity party because I can't do what I could a year ago. It could be worse. God still isn't ready for me yet. He has made that apparent, because he could have had me twice in the last year. My cholesterol was 140 at my last attack and my triglycerieds were 184. I have no family history of heart problems. Bad genes, they say, but who? firstname.lastname@example.org
Brenda H, September 8, 1999 - Hi, I'm so glad Bill M is doing okay. Thanks for letting us know. I just wanted to let ya'll know I got accepted for SSD. Yippee! I will only get a small amount a month, but anything helps. I strongly recommend trying for it. How long should it take for me to get a copy of my doctor's file? They told me 10 days and that seems a bit long to make a few copies. Anyway, after one year of diagnosis, I'm going to get a second opinion to make sure I'm on the right meds. Someone brought this to my attention and I don't know why I didn't sooner! God bless, Brenda H, age 32, EF 25%. Brendakay@wa.freei.net
Jon's Note: My ex-doc's ofice did it within 24 hours after getting a written, signed request
Doug K's September 8 reply to Luc D's September 4, 1999 - Hello all, Here is another ole timer (April, 1997 for me). It is good to see many new names and new questions, as well as some familiar ones. Most of us have particular areas of interest once we kind of get the overall view of the situation. I think Jon hit it right on the head about the number of reasons why people "leave." For whatever reason, this site has helped so many people that it should get an award of excellance for the effort put into it. I think many "older" members still read the posts more than we know. There was a time when looking in the search engines for Heart Failure didn't bring much up to learn - till Jon's Place came along - now they are all over the place! But his still has the content and support needed to be the best. Thanks again Jon, and good luck with Doctor number 2. Hope you are feeling good too, Luc. email@example.com
Karen K's September 9 reply to Luc D's September 4, 1999 - Hi All, I just thought I'd add a note to the list of those old timers who seemingly aren't around anymore. Believe me, I check this site more than once a day and read every post. It's here where I found out about Coreg and CoQ10 and although my EF didn't improve after taking both for 2 years, it didn't drop dramatically and my doctor said not to put too much credence (paraphrased) to the report. As we all know, EFs seemingly fluctuate. I went for my MUGA fully convinced that I would see a dramatic improvement since I had been feeling so well. Interestingly, after I received the results I didn't feel nearly as well and fatigue set in for a time. However, I'm back to my as spunky as possible self. I've upped my treadmill to 1 1/2 miles a day. I know I could and should do more but it is a bit boring. I have my treadmill in the same room as my computer and since it's a bit crowded I have only a window to look out but it does provide me with a lot of time for thanking God and thinking.
Right now I'm plain old bored. I've been doing my own housework, minimal as it may seem, but after seeing my rheumatologist last week and seeing x-rays of my spine she suggested if I could afford it I might consider having someone else do the cleaning. Yea! I'm going to be taking an online computer course starting the middle of this month and hope to learn how to design a Web site. That has been a winter project for several years that just hasn't gotten done. My number 1 (and only) son is getting married in June so I have something great to look forward to there. We really like his wife-to-be and any problems we had with Jason have all but disappeared. He calls home just to say hi where before I sometimes had to search him down. He completed a course in broadcasting this past April and is now on the air in Marshalltown, Iowa. I listened to his audition tapes and didn't recognize his voice. He has a sharp mind and quick wit and hopefully he'll go far (TV is his goal).
Meanwhile my twin sister has had a mastectomy and gone through chemo and now they've found a mass behind her breast bone and another suspicious site at the location of her scar. She is scheduled for radiation treatment. In addition, she has some sort of dementia which my brother who is a PA thought was Alzheimer's but she has been told it isn't. It is quite difficult to carry on a conversation with her and I really should plan a visit to Washington state before the year ends. I think I'm rambling. Sorry; Told you I was bored. Karen K, age 56, diagnosed 1991, EF = 34%. firstname.lastname@example.org
Roger G, September 9, 1999 - Hi, No advertisement here. I was using AOL as an ISP. I was also having a lot of trouble with my phone line. There were many lost connections. After switching to Prodigy the phone line problems went away and so did a little of the extra frustration that I don't need. Have an apple today! Roger. email@example.com
Debbie H, September 9, 1999 - Hi everyone, I've been going back through a bunch of past posts the past few days looking for some specific information, with no luck. I am trying to find whatever information that you had available about dehydration. I have been having quite a few dizzy or lightheaded episodes when I move around. I thought at first it was medicine related - just getting up or moving too quickly. I've been soooo weak-feeling that it's almost an impossible chore to sit up, let alone to try to function. I have been more forgetful lately, with short term memory being almost nonexistent. I can't tell if it is my asthma and COPD giving me fits with more severe shortness of breath than usual, or the CHF. I haven't had the strength or "air capacity" even with the 02 the past couple of weeks to even wheel myself around in my wheelchair to get to the bathroom.
Up until the doctors diagnosed my heart problems in July, I had been having a horrible time trying to lose even one pound. I stayed at 250 to 280 lbs for the past 9 years, mainly because I couldn't get any exercise to eliminate any of the calories I was taking in. No moving around means you have to keep your caloric intake at zero! Anyway, I am now losing at least one pound every other day. Don't get me wrong, I love the way it is just melting off! I haven't changed any of my eating habits, I still eat the same relatively reasonable things and restrict salt. I have been restricting my fluids to 2 to 2 1/2 liters a day, where I would drink at least a gallon of ice water a day before. I am hjaving no cokes or coffee; just water. I guess you can gain weight with a water and toothpick diet! <g>
So I'm really stumped here. I'm not sure whether this is important enough to get in touch with my cardiologist or if these are normal symptoms from Bumex, Lanoxin, Lopressor, etc. I've also noticed that when I feel the most breathless and just "weird" feeling, that my pulse rate has quite a few irregularities and missed beats to it. This brings me to my last question. How do you take your pulse and what are you supposed to look for? I always thought you were supposed to count every heart beat for one minute, or for 15 seconds and then multiply by 4. Now I'm beginning to question the things I thought I knew. If anyone would take pity on me and can give me some answers, I'd sure appreciate it. My eyes won't stay open long enough to keep reading The Archives. It sure makes for interesting reading, though! I feel like I've known you all for years and years. Thanks ahead of time for the help and God bless all of you with some good days. Debbie H. firstname.lastname@example.org
Leland Y, September 9, 1999 - Hi, I wanted to share with you the good things that are happening with me. As you know from my July 27 post, I think, my MUGA improved from 17% to 45% in 4 months. I went back for my 6 month checkup since getting sick with CHF on March 13. Check these out:
|Item measured||May 24||September 3||Normal|
|Cholesterol||273||182||200 or less|
|Triglycerides||401||307||200 or less|
|LDL||135||81||130 or less|
|Cholesterol to HDL ratio||6.3||3.6||5 or less|
|Hgb A1C||7.2||6.9||4.2 - 6.7|
All the other tests were normal: liver functions, thyroid, electrolytes, etc. My digoxin level was 0.77. The doctor increase my dose to 0.25mg 4 days a week and 0.125mg 3 times a week. I will be having an echocardigram 9/9 to see if my heart has shrunk. I can hardly wait. I have been feeling very, very good, mentally and physically. I also do my walking exercise daily, faithfully. I still watch my diet, with less sodium as possible and more fruits and vegetables, and less meats. Thanks to Lily for being my supervisor. Everything was so good the doctor (she's female) would have given me a kiss, if my wife Lily had not been there!
So, for all those who may not believe, I pray and hope that I can be living proof as an example. Anyone, please feel free to e-mail me if you wish. Jon, thanks for creating this site and allowing me the chance to post and read posts. This is the greatest site. It has given me a lot of moral support, hope and prayer, and probably still, for the future. Leland. LLYee@surfside.net
Sue B's September 9 reply to Luc D's September 4, 1999 - Hi Luc, This old timer is still here too. I always wondered when The Beat started. I began in August of 1997 and am still grateful that I found you. Me and my husband have been on the ride of our lives since January 28. He had a triple bypass, followed by a stroke which kept him in the hospital for a month of rehab. Then he had his carotid artery redone; he had a 70% blockage again. My father had a heart attack in April followed by CHF! My husband has had 4 angioplasties done in the last 4 months. We have been to Washington Hospital Center twice so that he could be part of a radiation study but both times he did not get the radiation. I can continue but I think you get the gist. I am doing pretty well, considering, which I attribute to resting, eating right and prayer. I check into The Beat from time to time, just to see how all of you are doing, but I haven't posted for awhile. I just wanted you to all know I was still around and kicking! Love, Sue B. email@example.com
Christy M, September 9, 1999 - Hi, I'm in the process of filing for SSD and am puzzled by the information they require. I was hoping someone here who has gone through the process might be willing to shed some light. I have been approved for disability by my employer. When I called SS, they needed to know how much I was currently earning. The only figure I could provide was my disability earning amount. It seemed to me, since I was on the phone and couldn't see what they were filling in on the form, that they were using my Disability earnings as "earned income." Has anyone filed for both employer disability and SSD, and received both, or is getting employer disability a reason for SSD disapproval? I guess my question remains: Is SSD qualification based on your disability or the amount of income (disability payments in this case) you receive? Thanks and stay well. Christy M, age 41, EF 20%. breeZip@hotmail.com
Jon's September 9 reply to Christy M's September 9, 1999 - Hi Christy, I'd call SS back and talk to them some more. Monthly SSD payment size is partly based on your wage level just before you were disabled. The more you earned when well, the higher your SSD payments will be - up to a point. You need to be sure SS has an accurate record of your earnings for the last year "on the job" at least. Your earnings now or then have no bearing on your qualifying for SSD. That is based only on your level of physical or mental disability. The only bearing your employer based Disability income will have on SSD is that it may raise your total income to the point where your SSD payments will not all be tax-free. Jon.
Ginger's September 9 reply to Jon's September 8, 1999 - Hi Jon and Heather, There is another person with COPD on the multiple condition page named Mary Jo Bower. My multiple condition page has been done by people wanting to be on it e-mailing me their info. I don't have the the expertise to do a form. I am willing to keep it up through the e-mail system but if you all think the form method is better, then go with his idea. Also as Jon did mention, for a while my time on here has been and will be a little limited so the page updates may get up slower then you would like. The page will stay up either way because it is accessed by other people through other sites then just this one. Jon, if you go the form route could you please keep me informed of updates for my page so I can keep it up todate for the other people that go there. Also, remember I will be gone from the 9/17 to the 10/1 and chat problems can be addressed to Tom W or Jon during that time. Stay well, ya'll! Hugs, Ginger. firstname.lastname@example.org
Jack's September 9 reply to Roger G's September 8, 1999 - Hi Roger, Sugarbuster's diet, Roger? How can you be on that diet and eat all the stuff you listed? It's practically all sugar. email@example.com
Jana B, September 9, 1999 - Hi everyone, I haven't posted in awhile. Since my stroke, the heat and weather has really had an effect on how I feel. Maybe it always did and I didn't pay attention. I was wondering, since this is my first winter coming up that I have been on meds, what can I expect as far as CHF symptoms? The heat really sends me into CHF and I am hoping the cold won't. By the way, on Aug 17, I became a grandma, at age 36! It wasn't what I had planned but life never is.
Jon's Note: Congratulations, Granny Jana!
Susan P's September 9 reply to Luc D's September 4, 1999 - Hi Luc, There are a lot of us ol' timers around. That should encourage the newbies - we're not all dead yet! I didn't post for about 8 months because I was feeling quite well. Although I did read the posts frequently and sent e-mails of encouragement to newbies as often as I thought it would help or be appreciated. Last spring, I had 2 artificial valves installed and now I'm back to feeling great, camping, dancing and working full time. If anybody comes up with a cure for the baggy skin, let me know. I feel like I'm sliding into a puddle these days. My chin isn't over my heart yet but I'm definitely slipping. firstname.lastname@example.org
Rick M's September 9 reply to Luc D's September 4, 1999 - Hi Luc, I also read the posts every day, and like most old timers, am satisfied to read the responses of the newer members. It is gratifing to hear from the old timers as well. We don't want to be bores, as Bill says, but maybe we should have a schedule of "sign-ins" just so that we all know we're still around. As for myself, I'm still 74 1/2 years old and have just joined the ranks of the diabetic crew. I only take one pill a day for that, in addition to the fasting glucose test each morning. email@example.com
Jon's September 9 reply to Ginger's September 9, 1999 - Hi Ginger, Actually, that's a very good idea. I have the page up now and the form is active. There is a note above the form that the info entered will be automatically forwarded to you, which I will do. That way, if either page has a problem, the info is still available. You can join this list at www.chfpatients.com/biosgate2.htm. Jon.
Robin W, September 10, 1999 - Hi everyone, I haven't read the posts or posted myself in awhile. I have been trying to squeeze a whole summer's worth of activities into the last few weeks. I am feeling great and my new heart is just ticking away. I often wondered when I was waiting, if I was doing the right thing (like I really had a choice). Now I know I did. Also, thanks to your forum, Jon, I have been talking with Lisa, who also posts here and received her heart a week before me. We have so much in common it's scary and we live only 20 minutes from each other. We have talked on the phone and plan on meeting sometime during the next week. If anyone has any transplant questions, please feel free to e-mail me. I hope everyone is well. I'm going to start reading those posts now. Robin W. firstname.lastname@example.org
Roger G's September 10 reply to Jack's September 9, 1999 - Hi Jack, I didn't realise that there was a lot of sugar in cabbage, salmon, brocoli, whole grain bread, brown rice and green tea. <g> These are mostly good for omega 3 and antioxidants. The fruit and brown rice do have some sugar but the fiber and vitamins are really good for my body. The sugar absorbed from fruit is lower if it is eaten as a midday snack without other food. The oranges are full of vitamin C, which helps my body hold CoQ10 and vitamin E. Did I mention no white bread or white flour? You may have read quickly and found the words "beats, carrots, pasta, and white flour." I said that these are bad for me! Yes, I do like a little premium ice cream on occasion; this is good for the spirit. Friday is fish day. Roger G. email@example.com
Al H's September 10 reply to Luc D's September 4, 1999 - Hi Luc, Another old timer here. I think my first post was August 1997, I started reading several months earlier. Yes, the old group could be serious but a barrel of laughs at that time. At that time many of us were placing hope with that muscle cutting doctor from South America. We took the time to share with and support each other. Over time we became comfortable with our new way of life and turned it over to the newbies. They ask many of the same questions we did but they do share more insights into this illness. As other old timers have stated, many of us still snoop around and e-mail those with posts which touch us in that special way. It's great to hear from many of the old timers and welcome to all the newbies we failed to recognize. Mr Bill always tried to take care of this for us. As Jon has said several times, "If it wasn't for Mr. Bill D, this site would probably never started. It was a challenge." And yes, some of the old timers, which became good friends, have died but most are still around. AL H, age 52, diagnosed in 1986 and again in 1995. firstname.lastname@example.org
Bill M, September 10, 1999 - Hi everyone, Well, the powers that be said my quintuple bypass apparently has gone well. I have many apprehensions as my EF is now 10% and that causes me concern. Finally I'm able to eat, thank goodness, and keep it down. I want to thank everyone who took the time to write me words of hope and encouragement. Believe me, it was well and thankfully appreciated. So now the mending starts. I'm encouraged that with proper meds, a good attitude and some help from the good Lord, I'll be posting here for a long time. Again, thank you, thank you, I used your strength to get through this. Your friend, Bill M. email@example.com
Joy R, September 10, 1999 - Hi, It has been an interesting week since I posted asking about Dee's O2 saturation levels, which were so low. She e-mailed me and asked if I knew of any COPD sites, so I posted and also e-mailed Heather to ask if she could help with some Url's. So those of you that are interested in these sites about COPD, here they are:
I have made new friends this past week who e-mailed me for more information. I hope this is useful. To Debbie, it sounds like you need to call the doctor with those symptoms. It's better to be told it's ok than to go on wondering. To Bill M, I'm so glad your surgery was a success. Aren't you glad it's over?! To Bill D, I wondered what happened to you. I'm glad to know you're still kicking. To Heather, You are such a wonderful friend who always is positive and seems to pass on her cheerfulness. I always feel better after hearing from you. Joy R. firstname.lastname@example.org
Carolyn H's September 11 reply to Roger G's September 10, 1999 - Hi, I was told by a nutritionist that if you put the brown rice in a hot skillet - no oil, just the rice - and keep stirring it until it reached a golden brown, you turn the sugars to protein. Please note that some of the rice will pop slightly like popcorn. I found that roasting the brown rice cuts the cooking time to just a few minutes. I let the rice cool overnight and put it in a airtight jar to preserve it. It is really good and has a nut-like flavor. email@example.com
Roger G's September 11 reply to Bill M's September 10, 1999 - Hi Bill, I am glad to read you are having a + attitude. I have never given up the hope that this is all going to go away. It hasn't but the hope is still there. My EF is up but the brain power is still low from reduced O2. Still, the hope helps. Roger G. firstname.lastname@example.org
Jack's September 12 reply to Carolyn H's September 11, 1999 - Hello Carolyn, I think your nutritionist told you wrong. All you have is toasted rice. You can't turn sugar into protein. Jack. email@example.com
Lisa H, September 12, 1999 - Hi everyone, I haven't posted in awhile but now have good news. On September 9 at 9 AM, I had my second cardioversion and it seems to have worked. I was wondering if anyone else had this done and if they felt better suddenly or did it take awhile to tell any difference? My EP doc felt I would get all kinds of energy but that hasn't happened yet. The best part is not waking up at night feeling weak. Also, does cardioversion give other people itchy burn marks? I want to scratch but it is so sore. Talk at ya' later. Lisa. firstname.lastname@example.org
Jay Kelly, September 12, 1999 - Hi, Last year in July of 1998, I was diagnosed with severe CHF. My heart at diagnosis was in a-fib and enlarged. My EF was 25%. I was given Lasix, then put on Coreg, warfarin, pacerone, Lanoxin, and captopril. Once my a-fib was at a controlled 100 bpm, the cardiologist converted me with shock therapy. In November, 1998, an angiogram was performed and it revealed no blockages and a higher EF of about 54%. In December, 1998, an echo was performed and it revealed a normal sized heart. In March, 1999, I walked 11 minutes at 4 1/2 mph on an incline until my heart rate reached 186 beats per minute and my stamina was at its end. The doctor at the time rescheduled me for a September 30, 1999 appointment.
Currently I am taking 12.5mg Coreg twice daily, 20mg Zestril and 0.125mg Lanoxin. I supplement with CoQ 10, L-Carnitine, garlic, Vitamin E, beta-carotene, selenium, Hawthorne, a multi-vitamin, and a multi-mineral. I do feel completely better than I did this time last year, but I know things can change quickly.
From what you have read, could you give me some help with questions that I should ask my cardiologist at the appointment? I have not had a blood test since last December and I understand this is important. I really do wish to send my doctor a letter detailing the questions for him to have answers to at the time of my visit. If you could, I really would appreciate it. I am a 39 year old white male with two beautiful daughters, ages 5 years and 8 months. I want to be there for them. I pray that you are feeling well and thank you so much for this wonderful forum. Sincerely, Jay Kelly.email@example.com
Jennifer, September 13, 1999 - Hello, I've just discovered this site, and I'm not sure if I'm in a place that can help me or not, but its worth a shot. :-) My name is Jennifer, I'm 20 years old, and about 4 months ago I was having minor surgery to take a biopsy. The drug they used caused an adverse reaction that lead to a week in the hospital, and now I'm faced with life altering episodes of arrhythmia. I get these episodes all too often, about once every 2 weeks, where I can't do anything but hope my heart doesn't burst out of my chest! My pulse gets up to 210-250. I was recently told by my doctor that she was considering putting me on Rythmol.
I wanted to know more about the drug, how it is administered, and typical doseage. I can't seem to find it to easily on the Web. Gee, the things I find to do at 2 AM while I wait to get back to "normal" if I remember what that is. Anyway, any help that you kind folks could give me, either personal experiences, or places where I can find the information I'm looking for, would be greatly appreciated. Thanks so much. firstname.lastname@example.org
Jon's September 13 reply to Jennifer's September 13, 1999 - Hi Jennifer, I have never taken Rythmol myself, but see this page, this page, and this page. Rythmol is a Class 1C anti-arrhythmic drug. It's generic name is propafenone. Don't forget to use the resources listed on my Links page, including Medline! Jon.
Allen Cravener's September 13 reply to Lisa H's September 12, 1999 - Hi Lisa, Yes I got the cardioversion, the burns, and the itching. The burns and itching go away in about one week or so. My hospital gave me some ointment to put on my burns. They realy didn't bother me too much. Best of luck. Allen. email@example.com
Luc D's September 13 reply to Al H's September 10, 1999 - Dear friend Al, I just want to thank you for the fine note you have written to me. I'm having bad days again, with chest pains and lots of fatigue. If I didn't have my children and my American friends, I would be dead by now! Sometimes I don't know why I'm still around. I always try to show my children I'm doing ok because I don't want to disturb them. My children start crying, they love me so very much and they are the whole world for me. I could not go on without them. I hope that one day the cardiologists will know how to help me out. I wish you all the best life can give and I wish everyone here on this heart forum the same. Sincerely, your Belgian friend Luc. firstname.lastname@example.org
John Len's September 13 reply to Roger G's September 11, 1999 - Hi Roger, As I understand it, being a diabetic, the body utilizes 2 or 3 types of fuel for energy. Most foods are some form of statch or sugar, which the body converts into glucose. This is what the cells burns for energy; next is fats, which the body also burns or stores for cell energy and which are essential to carry fat soluable vitamins into the body. As to protein, I am too lazy to drag out the book as I am getting old and senile, and can't remember what it does for a living. John. email@example.com
Jon, September 13, 1999 - Hi everyone, Please remember to add your name to the group at the Me Too! page. Also, keep sending me those low sodium recipes! No bios have come in. Take a look at the page counter at Who's Who, guys. It's very popular but it does no good if your bio isn't there.
Ginger, about every other e-mail I send to you by way of the "reply button" is bouncing, so you may need to do a manual check on the Me Too! page to be sure all the data is getting to you. Jon.
Debbie F, September 13, 1999 - Hi, everyone, I thought maybe someone out there can help. Since my diagnosis 3 years ago, I've had the same cardiologist; that is, until last May, when he decided to move his practice to South Carolina. I live in Ocala, Florida. I've given the doctor that took his place numerous tries but all he wants to do is reduce and change my meds, and make me feel even worse than I did. He spends exactly 5 minutes with me and than walks out, all of my questions unanswered. Does anyone live in Florida and could recommend a cardiologist? Thanks in advance for the help. Debbie F, EF 25%. firstname.lastname@example.org
Pat L's September 14 reply to Debbie F's September 13, 1999 - Hi Debbie, Check out some of the great hospitals in Gainsville. They should be able to hook you up with a good cardiologist or cardiology group. If not, try Jacksonville. Although that's a good drive, they have heart failure specialists and heart failure clinics at some of the hospitals. You could get the info about the heart failure clinics from the Yellow Pages of the Jacksonville phone book. Good luck. Pat. email@example.com
Wes C, September 14, 1999 - Hi, I would like to here from anyone that has an ICD unit. firstname.lastname@example.org
Art D, September 15, 1999 - Hi everyone, This is Art (bigdog). I am one of the old timers also and really enjoy coming back and checking up on all of you. I had my first heart attack in 1993, then came down with this CHF thing in January of 1998. That's when my world ended, or I thought it did. It took Jon's Place and Jon himself to make me understand it didn't end - it just started, and I found that I gained many friends by coming to this site. These friends have helped me out so much just because they understood and I wasn't alone anymore. Now I sit back and read all the posts and absorb all the energy and information all you new kids bring. My EF went up finally from 28% to 59% and as far as we can tell, its due to Coreg. Yes, I went through that entire Coreg nightmare. Well, God bless all you new kids and please e-mail me anytime you just plain want to talk. Us older guys and gals have been there and are not afraid to talk, especially when asked. I sometimes feel bad not posting as much but it's really nice to see the energy coming from the pages. And don't forget Luc over there in Belgium. He is a real character and speaks good English as well. He loves to talk about his beautiful country! email@example.com
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.