Barbara P J 10-1 upward titrating of Coreg dose - how fast?
Jon's 10-1 reply to Barbara P J's 10-1 my Coreg dose increases
Gus R's 10-1 reply to Shirley G's 9-30 online medical dictionaries
Ginger 10-1 update, my sister, chats & more
Sharon J W 10-1 got ICD/pacer, update & more
Don C's 10-1 reply to Henry T's 9-30 Aldactone side effects
Jon 10-1 need some bios & recipes!
Gerry S 10-1 intro, questions about how to help myself
Lisa M 10-1 info about heart transplants
Betty S 10-2 weight problems & gastric bypass surgery
Brenda H's 10-2 reply to Lisa M's 10-1 thanks for transplant info & more
Bobby Farish 10-2 multiple EF readings
Jon's 10-2 reply to Bobby Farish's 10-2 RVEF & LVEF
Phyllis A 10-2 update on my dad, many thanks
Pat L 10-2 update, Coreg dose, questions
Jon's 10-2 reply to Pat L's 10-2 Coreg dose and actions
LeeAnn D 10-2 thanks, & questions about life's crispness, RLS
Jon's 10-2 reply to LeeAnn D's 10-2 RLS, life's crispness
Barbara F 10-4 thank you all
Doug K 10-4 has anyone heard from Muriel?
John Len's 10-4 reply to Brenda's 9-28 also track your cholesterol
Joe's 10-4 reply to Jon's 10-2 try vitamin E for RLS
Jon's 10-4 reply to Joe's 10-4 thanks for the tip
Betty S 10-4 questions about red blotchy skin patches
Linda O's 10-4 reply to Jon's 10-2 surgery after-effects, attitude & more
Phyllis A's 10-4 reply to Jon's 10-2 RLS & creepy feelings question
Jon's 10-4 reply to Phyllis A's 10-4 RLS & creepy feelings, recipes, sleep
Staci H's 10-5 reply to Phyllis A's 10-4 creepy feelings - question
Shirley G's 10-5 reply to Jon's 10-2 looking outward rather than self-pity
Brenda H's 10-5 reply to Phyllis A's 10-4 creepy feelings & to LeeAnn & more
John Len's 10-5 reply to Betty S' 10-4 red spots, patches on skin
Maggie C 10-5 question about chest pain, CHF, bypass
Jack 10-5 had me fooled
Jeanette 10-5 what to do for flu symptoms
Jon's 10-5 reply to Jeanette's 10-5 about herbs & over the counter meds
Joy R's 10-5 reply to Phyllis A's 10-4 creepy feeling, addiction & more
Lori P 10-5 seeing a new doc now
Cathy Witteveen 10-5 questions about Candesartan trial
Ginger 10-5 does anyone take sleeping pills?
Phyllis E's 10-5 reply to Jon's 10-4 does vitamin E thin blood?
Bobbi Z's 10-5 reply to Danny S' 9-28 breathing tests & results
Bobby Farish 10-5 AHA site posting our stories
Sharon J W 10-5 to Phil about e-mail address
Pat L 10-5 questions about Aldactone dose
Jon's 10-5 reply to Doug K's 10-4 heard from Muriel!
Al H's 10-6 reply to Doug K's 10-4 Muriel is ok
Tammy G 10-6 does anyone get swollen eyelids? & more
Jane M's 10-6 reply to Jeanette's 10-5 why can't you get flu shot?
Lori P's 10-6 reply to Ginger's 10-5 Buspar, Tylenol PM as options
Doug K's 10-6 reply to Jon's 10-5 Muriel & more
Cliff Barefield 10-6 insomnia, itching & twitching questions
Sherrell G's 10-6 reply to Ginger's 10-5 getting good sleep
Jeanette's 10-6 reply to Jon's 10-5 herbs, interactions, does anyone else take these?
Harry Jones 10-6 anyone react to Zaroxolyn?
Phyllis A 10-6 thx, update, & to Ginger
Phyllis A's 10-6 reply to Jeanette's 10-5 flu shots & to Maggie
Karen K 10-7 prayer request, sleep aids
Jack's 10-7 reply to Ginger's 10-5 sleep aids
Mary Burns' 10-7 reply to Harry Jones' 10-6 Zaroxolyn experience
Maureen Mock 10-7 thanks for support, update & more
Pat L's 10-7 reply to Phyllis A's 10-6 flu shots & egg allergy
Phyllis A's 10-8 reply to Harry Jones' 10-6 zaroxolyn experience
Leland Y's 10-8 reply to Cliff Barefield's 10-6 itching, drug side effects & more
Leland Y's 10-8 reply to Ginger's 10-5 sleep aids
Leland Y's 10-8 reply to Jack's 10-7 drugs to aid sleeping
Leland Y's 10-8 reply to Karen K's 10-7 anxiety drugs, stress & more
Boots 10-8 EF & breathing question
Staci H's 10-9 reply to Boots' 10-8 EF & breathing
John Len's 10-9 reply to Boots' 10-8 Url for breathing problems
John Len's 10-9 reply to Betty S' 10-2 gastric bypass
John Len's 10-9 reply to Jon's 10-4 tingling in the feet
Jon's 10-9 reply to John Len's 10-9 tingling in the feet
Al H 10-9 Jill M's husband died
Sherrell G 10-9 be sure to get a flu shot
Bill D's 10-9 reply to Boots' 10-8 EFs & breathing, fluid retention, doctors
Lydia Moore's 10-9 reply to Boots' 10-8 EFs & breathing, doctors
Cindy M 10-9 has anyone had a psychiatric exam?
Anita F 10-9 intro, does anyone take CoQ10?
Gus R's 10-10 reply to Cindy M's 10-9 SSD, psych evaluations & reviews
Staci H's 10-10 reply to Anita F's 10-9 CoQ10 info & more
Brenda H 10-10 depression & meds, to Perry
Helen L's 10-10 reply to LeeAnn D's 9-23 coughing & meds
Patti S 10-10 seek CHF & PPCM info
Susie T 10-10 heart classes & EF, ischemic definition questions
Jon's 10-10 reply to Susie T's 10-10 heart classes & EF, ischemic definition
Jill M 10-10 thank you & about my husband
Ryan Johnson 10-10 a heart failure Url
Linda's 10-11 reply to Brenda H's 10-10 imipramine induced cardiomyopathy
Karen K's 10-12 reply to Linda's 10-11 imipramine induced cardiomyopathy
Christy 10-12 menstruation & CHF
MinaKay's 10-12 reply to Jon's 10-9 leg & foot pain meds
Phyllis A 10-12 need more prayers for my dad, please
Don G 10-13 pre-ordering now possible for cookbook
Jon 10-13 Web TV users please contact me
Brenda L 10-13 disability insurance questions & more
Bill D's 10-13 reply to Mina Kay's 10-12 tegritol for foot pain
Jo 10-13 update, questions about symptoms & treatments
LydiaMoore's 10-13 reply to Karen K's 10-12 imipramine induced cardiomyopathy
Linda's 10-13 reply to Karen K's 10-12 imipramine induced cardiomyopathy
Lori Pearson 10-13 new e-mail address
LeeAnn D 10-14 what helps this poor memory?
Kerry Fryar 10-14 questions about nitro patch & headaches
Bill M 10-14 update, disability, insurance & more
Gus R's 10-14 reply to Jo's 10-13 attitude, caths, stress tests, meds & more
Matthew 10-14 liver congestion questions
Jon's 10-14 reply to Matthew's 10-14 liver congestion experience
Kathryn C 10-14 imipramine induced cardiomyopathy
Jon's 10-14 reply to Kathryn C's 10-14 drugs & drug companies
Pat L 10-15 update, EF is way down & more
Lori P's 10-15 reply to Jerry Fryar's 10-14 nitro & headaches, & more
Linda's 10-15 reply to Jon's 10-14 drugs, illnesses & finding others
Jon's 10-15 reply to Linda's 10-15 catching hard to find info
Barbara P J, October 1, 1999 - Hi, I have a question about Coreg, as I've recently been placed on it. How long on average does a person stay at a given dose before moving up to the next highest one? I know people have said it takes a long time for their body to adjust but what are you calling a long time? Any out there that adjusted in a very short time? Thanks Jon, for developing this site. It has been very helpful to me and it's so nice to have contact with others in the same condition. email@example.com
Jon's October 1 reply to Barbara P J's October 1, 1999 - Hi Barbara, My Coreg dose went from 12.5mg twice daily to 25mg twice daily in 2 weeks. Then I went to 25mg in the morning and 50mg at night in 2 weeks, and then to 50mg twice daily in 2 more weeks. It's a highly individual process though, so I wouldn't really rely on any average for it. Jon.
Gus R's October 1 reply to Shirley G's September 30, 1999 - Hi Shirley, As usual, Jon answered your question, but for future reference you might want to check out The On-line Medical Dictionary at http://www.graylab.ac.uk/omd/index.html. It doesn't go into great detail on a subject but is the largest collection of online medical definitions I have ever seen. In this case, it didn't do well, as EP didn't bring up anything, it wanted EPS. The bottom line here is that you went to the best source, but the OMD isn't bad. ;-) Best wishes, Gus R. firstname.lastname@example.org
Jon's Note: Don't forget all the online medical dictionaries listed at the Links page
Ginger, October 1, 1999 - Hiyas, First I want to thank all of you for your e-mails and support and prayers. I can't answer them all right now but wanted you all to know they mean a great deal to me. Many have asked what is going on with my sister and all I can answer right now is that it is not going well and changing rapidly. I will not be resuming chats for now. If you need help with them, please continue to go to Jon or Tom W. I will be on ICQ from time to time but for the most part will be offline and with my sister. We all know how it is to be stuck in a hospital. I will keep you all in my prayers as usual and stay well, ya'll. Hugs, Ginger. email@example.com
Sharon J W, October 1, 1999 - Hi, Thank you all for the EPS info. I sure wish I had a laptop with me this past week. Because of polymorphic VT, the studies were deemed unnecessary and I went for an emergercy ICD implant. The good news is that it's a combination with my pacemaker and can more easily be co-ordinated. I was shocked ;-) to see how small the unit was. I feel great except for the incision site. I was extremely apprehensive about going flatline during the exchange, since I have complete heart block. It has happened several times before, but this was the "A" team and they were wonderful. I lucked out again. No amiodarone yet (I found it in the Drugs and Archives pages) - thank heavens! It meant a lot for Beth to be able to constructively help me by posting. It was good to have you all to come to. I must admit that since I am naturally ablated because of the complete heart block, I felt like Ben, that it was an insurance requirement. We have that right - no, it's an obligation - to question. In my instance, my doctor welcomed each and every question. My love to all of you. Thanks for being there. firstname.lastname@example.org
Don C's October 1 reply to Henry T's September 30, 1999 - Hi Henry, I started taking Aldactone about 2 weeks ago. So far I have had no trouble with it, but I don't know if it's working or not. I don't feel any difference yet. I think my cardiologist just gave it to me because I didn't have enough medication to take. <g> Really, she said that the studies have shown that is does help bring long-term relief from CHF. It may not "cure" you, but anything that lets me hang around a little longer is good enough for me. Hang in there, Don, age 39. email@example.com
Jon, October 1, 1999 - Howdy-doo, I just got caught up on bios and recipes, so I need some more to keep me busy and out of trouble. Come on, guys, some of you out there have a bio or low sodium recipe just waiting to be written down and sent to me, I know it! Jon.
Gerry S, October 1, 1999 - Hi, I am newly diagnosed as having CHF. I am 76 years old and have had emphysema for several years. Last week I was admitted to our local ER with breathing difficulties, swollen ankles and legs, and assumed it was my emphysema. I was told I had CHF, given a diuretic intraveinously and a breathing treatment, then sent home to consult my GP. I saw my GP today and she confirmed the diagnosis. I was told to stay on my diuretic - 25mg IC hydrochlorothiazide - ½ dose every other day, and was given a low salt diet. My doctor took a blood test to test my thyroid and electrolytes. I am to see her in one month.
Should I be seeing a heart specialist or doing anything else to help my condition? The info I read in Jon's Place was extremely enlightening and eased my mind tremendously. I had thought I was going to die immediately. I felt blessed when I saw such a young, happy looking face on Jon, who is obviously more ill than I. I lost my daughter to emphysema 3 years ago at age 42, and miss her so much. I look forward to any response anyone wishes to give me. Gerry S. firstname.lastname@example.org
Lisa M, October 1, 1999 - Hi, This Friday night, October 1, 1999, on Dateline NBC at 9:00 PM, there will be a one hour show about Mt. Sinai Hospital in New York, where I got my heart transplant. The show is about heart transplant patients there. I also just found out that I will be on the cover of Life magazine's November 1999 issue, which will include a heart transplant article! Can you believe it?! I thought some of you might be interested in watching the show or reading the article in Life magazine. Lisa M. Goldylcks7@aol.com
Betty S, October 2, 1999 - Hi, I am just wondering if anyone on this site has every considered or had gastric bypass surgery to lose weight? I am very overweight and have had a difficult fight with weight for all of my adult life. My twin is scheduled to have the surgery the beginning of January but she has no heart problems. Any information would be appreciated! I pray for all of us on this site everyday and appreciate all the time and effort Jon and others put into keeping us all informed! May His angels watch over all of you. email@example.com
Brenda H's October 2 reply to Lisa M's October 1, 1999 - Hi Lisa, Thanks soo much for the info on heart transplants. I love Dateline anyway. Plus that's really cool, that you'll be on Life mag! Hats off to you. How long has it been now since your transplant? I watched Chicago Hope last night about heart transplants and it was kind of of depressing to me. Keep hanging in there! Brenda H. Brendakay@wa.freei.net
Bobby Farish, October 2, 1999 - Hi Jon, I had my 6 month checkup yesterday at UNC School Of Medicine at Chapel Hill. After my imaging heart scan, I met with Dr. Adams and they still didn't have the results of the scan yesterday. So Joe and Val (the nurses) told me that they would call with the results this morning, which they did. My EF was 24% six months ago. This morning when they called, my right side EF was 50% before and 51% now and my left was 24% six months ago and 26% now. I didn't realize that there were 2 EFs.They left the message with my wife so I didn't get the explanation clear. I've just been seeing one EF appear on everyone's posts, as mine, and assuming that there was only one. I suppose that there is one EF for each of the left and right chambers. The pharmacist also made me feel better that there were new drugs in the works now and so many things in the pipeline. My wife has been reading alot about gene therapy. I'm real hopeful about that as well. Bobby, EF 26%. firstname.lastname@example.org
Jon's October 2 reply to Bobby Farish's October 2, 1999 - Hi Bobby, Yes, there are 2 EFs, one for each ventricle. Look at an echo report and you will see that what we call EF is referred to as LVEF or left ventricle ejection fraction. However, because 90% of heart failure patients have left ventricle involvement first and foremost, I use the common medical practice of calling LVEF simply EF. Jon.
Phyllis A, October 2, 1999 - Dear Jon my friend, and to all of my friends, Thanks so much for all your prayers for my Dad. He is coming along quite well. Thank God and you all, they only took part of his bowel and didn't have to do a colostomy. Our Lord and Saviour is always watching over us. I don't know what I would do without you all, I love you all! Thanks again, Phyllis A. email@example.com
Pat L, October 2, 1999 - Hi everyone, Does anyone know if Coreg has a vasodilating effect in addition to slowing the heart rate? I have had problems with side effects with every vasodilator I have taken, even at the lowest dose and am wondering if the addition of Coreg to the medication mix might have compounded the effects. I was put on Aldactone by my new cardiologist at my initial visit with him in April, and since then he has continually readjusted my medications, adding Zaroxolyn and cutting the Coreg down. I now take 3 diuretics a day! I feel better at the lower dose of Coreg, with more energy than I've had for several years, but this is tempered by a worry that taking less of the medication might cause my heart to enlarge again. At this point, I do not want the poor quality of life I was living from January of 1997 until about January of 1999. Pat. firstname.lastname@example.org
John's October 2 reply to Pat L's October 2, 1999 - Hi Pat, Coreg is also an alpha-blocker, which causes vasodilation. Please give the intro at the top of the Coreg page a read. While Coreg is effective at raising EF, it is less effective than ACE inhibitors for preventing heart enlargement, so as long as you are taking an ACE inhibitor or ACE 2 blocker, I wouldn't worry about the lower Coreg dose. Jon.
LeeAnn D, October 2, 1999 - Hi everyone, Thanks for all the e-mails about coughing. I really appreciated the info and advice. My latest thought is more psychological. For those of you who have been diagnosed for awhile now, remember when you first got diagnosed and smelled every flower, watched every sunset and loved every child's giggle? I mean, just appreciated absolutely everything? I did at first and now it's worn off a little, maybe a lot. Even though I make a special effort every day to appreciate the little things, I'm a little more stressed, a little more grouchy and when I go to bed I vow to make tomorrow count. Sometimes I do. I think when my EF improved, expectations from myself and others got a little higher. Can anyone else relate to this? I've been thinking about it lately. Jon, what is RLS? email@example.com
Jon's October 2 reply to LeeAnn D's October 2, 1999 - Hi LeeAnn, RLS is Restless Legs Syndrome. For some people, the twitching and creepy, crawling feelings dominate, while others such as myself suffer a more direct form of plain old pain. Raising the legs, resting them, exercising them, rubbing them, heating them, icing them - nothing helps. It's a bit frustrating.
For me, getting the most out of life only happens when I am turned outward. When I focus on myself and my problems or challenges, I get somber, grouchy; ungrateful I guess I would say. When I focus on helping others, being a husband, a father, a brother, a son, a friend, and most of all a servant of Jesus, then I find myself feeling joy and functioning better despite my physical condition at the time. I suppose it's a matter of doing what I am meant to do, which is love my neighbor. Turning inward, life gets heavy and fuzzy. Reaching out, life stays crisp and clear for me. For what it's worth, Jon.
Barbara F, October 4, 1999 - Hi Jon and all you great people at The Beat Goes On, I want to thank all of you for your prayers for my hubby and for me. The Lord has been here for us when we have needed the strength, so thank you, thank you and thank you once again. You're all such special people. Barbara F. Bfletch@ivic.net
Doug K, October 4, 1999 - Hello all, I was just wondering if anyone has heard from Muriel? I haven't seen a post from her and haven't heard from her with e-mail either. We were going to try to meet about a month ago, but she suddenly stopped sending e-mail. I know one other CHFer who also hasn't heard from her, so I am a bit concerned. Maybe it's just a computer problem. Thanks. firstname.lastname@example.org
John Len's October 4 reply to Brenda's September 28, 1999 - Hi Brenda, In addition to what Jon says, I would insist on another cholesterol test. The cholesterol drug I am taking has lowered my choloesterol to normal and it helps keep my arteries open according to some reports. John. email@example.com
Joe's October 4 reply to Jon's October 2, 1999 - Hi Jon, Regarding RLS, 25 years ago a friend had this and his doctor suggested he try 400mg vitamin E daily. It worked for him. About 4 years ago, my wife started having RLS and I remembered the vitamin E treatment. As long as she takes the E, she has no symptoms but if she stops the E, the symptoms appear in about a week. Krait008@aol.com
Jon's October 4 reply to Joe's October 4, 1999 - Howdy-doo Joe, Since I am not on blood thinners and the amount isn't that high, this is a definite try-em-out! Thanks for the tip. :-) Jon.
Betty S, October 4, 1999 - Hi all, I have question but it is regarding a problem my Dad is having. He is 74 years old and had a heart attack 22 years ago. He has high blood pressure and diabetes. He got sick about a week ago with a very enlarged lymph node that has a lot of infection in it. They have filled him with antibiotics and he had surgery to cut out the infection in his leg. He has now developed red blotches over most of his lower body. It looks like blood vessels have broken and the blood has seeped up to the top of his skin. The doctors say they have never seen anything like it before and are going to do a test to see if he has infection in his heart valves. He lives in a small town, so the choices of doctors is not great. Can anyone let me know if they have had a similar experience? Thanks! God bless to all. firstname.lastname@example.org
Linda O's October 4 reply to Jon's October 2, 1999 - Hi Jon, I really needed your little uplift. I recently had a hernia repair and the big one was caused by the instrument in the belly button when I had my gallbladder out a year ago. Maybe it is the surgery and the healing process or the anesthetic, or maybe I am just being a little grouchy and me-me-meing. My friend told me it isn't where we start out from but where we end up that really counts in life. I hope you and your family are doing well. Linda O. email@example.com
Phyllis A's October 4 reply to Jon's October 2, 1999 - Hi Jon, I have a question for you about RLS. Is it a symptom of CHF? I constantly feel like something is crawling on me. I feel the twitching of my leg at night sometimes but I always have the feeling of something crawling on me. I thought it was just my imagination. I am glad to hear that someone else has it. Please explain what it is for me. Thanks. firstname.lastname@example.org
Jon's October 4 reply to Phyllis A's October 4, 1999 - Hi Phyllis, I can't explain it in your case. I'm sorry but I have no way to know what causes it. It's not a usual symptom of CHF, though. A creeping, crawling feeling is usually neurological, or having to do with nerves and your nervous system. Definitely check into it with your doctor!
Thanks to everyone who has sent me low sodium recipes! Now, I have something constructive to do, and it will keep me away from that old tv set. <g> I slept away 24 straight hours this weekend and I feel better. Sleep - ain't it wunnerful?! Jon.
Staci H's October 5 reply to Phyllis A's October 4, 1999 - Hi Phyllis and everyone, Phyllis, I also have those creepy crawly feelings all the time. I didn't start having them until well into my CHF diagnosis. Does anyone get them on their feet too? I get them there too and am constantly brushing one foot with the other thinking there is something on them! Yukky! Jon, could it possibly be from not getting enough oxygen to the ol' brain? Just a thought. You all have a good one! Flamioli@aol.com
Jon's Note: I'd say it is possible
Shirley G's October 5 reply to Jon's October 2, 1999 - Hi Jon, Thanks for the uplifting words, "Turning inward, life gets heavy and fuzzy. Reaching out, life stays crisp and clear for me" posted to LeeAnn D on 10/2. I needed to hear that. I have been feeling pretty sorry for myself lately, and your words were an excellent kick in the seat for me. Thanks! Shirley G. email@example.com
Brenda H's October 5 reply to Phyllis A's October 4, 1999 - Hi Phyllis, I had this conversation with Jon not to long ago, about a crawling feeling in my back but I also get leg twiches once in awhile. I did talk with my doctor and he said yeah, it could be from diuretics, but who knows? Just to let you know, it's not in your head! LeeAnn, I feel the same way you do about taking things for granted sometimes, especially with my teenage son, who loves to argue. Uggh! Hey, I got my handicapped parking tag. Yipee! Brenda, EF 25%. Brendakay@wa.freei.net
John Len's October 5 reply to Betty S' October 4, 1999 - Hi Betty, I also am diabetic and have the blotches constantly breaking out on my lower arms. I believe it is related to my diabetes in my case. It seems to come and go but not to the extent you describe. I cannot get an answer from any of my doctors as to the cause. firstname.lastname@example.org
Maggie C, October 5, 1999 - Hello from the UK, I have gathered more useful info from your site than from any medical person or hospital since I was ill. Thank you. My question is, do you get chest pain with CHF? I had a triple bypass in April, and since then no angina. This last week or so, I have had mild pain. I'd be pleased to hear from anyone with the same. email@example.com
Jack, October 5, 1999 - Boy, You guys really got me straightened out on that one. I thought RLS was when you got bored at home and started hanging out at Honkey Tonks to cure the boredom. firstname.lastname@example.org
Jeanette, October 5, 1999 - Hi, Flu season is upon us. What can I do for the flu since I can't take the flu shot? Not to mention the fact with DCM, I can't take over the counter meds. Please let me know what I can do to reduce the effects of flu symptoms and any remedies would be appreciated. I am on herbs but need more help. Thanks. email@example.com
Jon's October 5 reply to Jeanette's October 5, 1999 - Hi Jeanette, Herbal remedies are as likely to interact with our Rx drugs as over the counter meds, and need to be used with just as much caution. Usually, there are one or two over the counter meds we can take but I never list them here because they vary from patient to patient due to differing meds, arrhythmia, CAD and so on. Ask your doctor is my best advice - no kidding. Jon.
Joy R's October 5 reply to Phyllis A's October 4, 1999 - Hi everyone, I just wanted to say that I get the creepy feeling in my extremeties like they're not getting enough blood, and it is usually when I need dobutamine. If I get my IV started, it stops and once I asked the doctor and he said he thought it might be from vasoconstriction. So I take my Vasotec at night when I finish my dobutamine infusion and it seems to help. Just a thought.
I also twitch at night really bad, to the point that I kick my poor husband and wake him up over and over. Mine is all over though, arms, abdomen, legs. I have no pain, just the twitch. It always starts when I start my IV hyperalimentation so I think it is due to all the nutrients going through my bloodstream. The solution is very high in sugar and has to be tapered up and then down every night. I have found the only thing that helps a little is xanax and I will only take that if I'm up most of the night. I try not to take more than 3 pills a week. Now I tell myself it doesn't make sense to suffer but I am afraid of being addicted. Since I live off IVs, isn't that a dumb thought?! What possible difference could it make if I became addicted to pills at this stage in my illness?! firstname.lastname@example.org
Lori P, October 5, 1999 - Hello, Friday I went to a new cardiologist and I'm really happy with him. My former one, who was really good, moved out of state and his replacement is a jerk. This one seems really up on what's going on and he's very easy to talk to. He adjusted several of my medications and is trying me on atenolol, which should control both my high blood pressure and my rapid heartbeat. I went into his office with a written list of questions and by the time I left, I had answers to every one. email@example.com
Cathy Witteveen, October 5, 1999 - Hi, This is my first post but I have been observing Jon's Place for several months and I really appreciate all the comments and support that people provide. I was diagnosed with CHF last February with an EF of 25 and all the usual symptoms. My EF was tested this summer and it has gone up to approximately 40, and I have been feeling generally better due to my meds and taking it easy. My question is, I have been invited to participate in a trial called "CHARM." It requires that I take Candesartan cilexetil or a placebo and I was wondering if anyone is on this similar trial or has any positive or negative comments about this medication. Your assistance is appreciated. Cathy. firstname.lastname@example.org
Ginger, October 5, 1999 - Hi, Sleep is wonderful if you can get it. Does anyone here take any kind of sleeping pills? I am only sleeping about 3 hours a night and am exhausted. I am looking for some ideas to hit my doc with. Thanks and hugs. Ginger. email@example.com
Jon's Note: For short-term sleeping problems, Ambien is great
Phyllis E's October 5 reply to Jon's October 4, 1999 - Hi, Does vitamin E thin the blood? I am taking 800 units a day. Thanks, Phyllis E. PErnsberge@aol.com
Jon's Note: Yes. See http://ohioline.osu.edu/ss-fact/0126.html
Bobbi Z's October 5 reply to Danny S' September 28, 1999 - Hi Danny, My husband had a Pulmonary Volume test last August. They may take a blood sample, then have you breathe into a tube that tests your lung mechanics, lung volumes and lung diffusions. They may have you use a bronchial inhaler for comparisons. The technician will explain to you how he needs you to breathe. A couple weeks after that test, they sent Steve for an Embolic Pulmonary test, which is in Nuclear Medicine, where he was injected with and inhaled radioactive goop and was x-rayed. This is just a process of elimination the doctors use. It was all pretty painless but was time consuming. Our tests found no embolisms but his lung diffusion is not good and he doesn't transfer O2 from his lungs to his heart, which made his heart work harder, which led to Cor Pulmonale. When you have the tests, write me and I'll give you our figures to compare with yours. Bobbi Z. firstname.lastname@example.org
Bobby Farish, October 5, 1999 - Hello, About 6 months ago, there was a post on this board from a lady doing research for The American Heart Association about CHF and DCM. She was asking to use stories and information from these experiences from the posters here. She left her address for people to give their permission to use their stories. Well I gave her mine and I see some others did too. I just wanted to post the link to that site and I think that you can share your experience too. They posted 2 paragraphs and our picture as well. http://www.americanheart.org/chf/testimonials/index.htm Bobby, LEVF 26%. email@example.com
Sharon J W, October 5, 1999 - Hi all, Phil, I have tried 3 times to respond to your kind e-mail. What am I doing wrong? firstname.lastname@example.org
Pat L, October 5, 1999 - Hi Jon and everyone, I haven't felt well for a few days. I am tired and slightly more short of breath. I went to the cardiologist today and he put me on the old holter monitor again and said, "Let's up the Aldactone to 50mg twice a day. I like all my patients on that dose." Could I get some feedback from anyone who is on Aldactone, particularly 50mg twice a day? Thanks everyone. You always help me out. Pat. email@example.com
Jon's October 5 reply to Doug K's October 4, 1999 - Hi Doug, I heard from Muriel this morning. She got whammied by a storm's lightning and lost her pooter, a heat pump, an air cleaner and a tree, among other things. She is just now getting back online. She is also struggling with shutting down Ned's business, which is a heart breaker for her, I am sure. She will be back in touch with all her online friends soon, I think. Jon.
Al H's October 6 reply to Doug K's October 4, 1999 - Hi Doug, By chance I received an e-mail - first one since August - from Muriel yesterday. Her home was damaged by a storm and she has been out of town. I will send you the information I received via e-mail. Any who, Muriel is safe and still with us. Al H. firstname.lastname@example.org
Jon's Note: Al sent this to me before I posted about Muriel but I didn't get to his e-mail before posting
Tammy G, October 6, 1999 - Hello, I don't have CHF but I have another rare disease that causes havoc on the heart. It's a calcium channel path disorder and I don't metabolize potassium properly. I have a slow, weak heartbeat, fast heartbeat, pounding heartbeat, occasional chestpain, low BP, fatigue and the list goes on. My question is, I ocassionally have swollen eyelids or pressure behind my eyes. Years ago, I remember someone telling me that swollen eyelids are an indicator of heart disease. I am trying to figure out where some of these symptoms are coming from. Have any of you ever noticed this as a symptom? Tammy. email@example.com
Jane M's October 6 reply to Jeanette's October 5, 1999 - Hi Jeanette, I'm curious as to why you can't take the flu shots. My doctors insist that I have them. I have read that anyone with a chronic condition such as asthma or heart problems should get the shot. We don't have the defenses to deal with the flu. Jane M. firstname.lastname@example.org
Lori P's October 6 reply to Ginger's October 5, 1999 - Hi Ginger, I asked my doctor about sleeping problems. I was put on 30mg of Buspar, which is an anti-anxiety pill. It helps "calm" me down and sleep better. I was also told that Tylenol PM is okay for short term use. Good luck. email@example.com
Jon's Note: Beware Tylenol PM if you take Coumadin. See this page
Doug K's October 6 reply to Jon's October 5, 1999 - Hello Jon, Thanks for the update on Muriel. From what I hear, she also lost her address book. So she had to get my address from another CHFer. She has had a rough time lately for sure! Goes to show ya that we need to make backup copies of addresses, etc. Bye for now. firstname.lastname@example.org
Cliff Barefield, October 6, 1999 - Hi, I am a CHF patient on Coreg, hydrazaline, isosorb-din and Lasix. I went through about a 3 month period after my dosages were increased where I suffered from insomnia, itching and twitching. I still have these problems occasionally but they are not as severe. My cardiologist doesn't know what is causing this. Suggestions from anyone would be appreciated. email@example.com
Sherrell G's October 6 reply to Ginger's October 5, 1999 - Hi Ginger, My doctor feels strongly that a good night's rest is an important part of my treatment plan. When I was first diagnosed, I used Tylenol PM (which contains benadryl) but then it started "wiring" me instead of relaxing me. Also, the article came out about a possible interaction with Coumadin. So now I take 15mg Temazapam (Restoril) 2 hours before bedtime as needed for sleep, which is almost every night. It is supposedly a low dose but is really helps me get into that deep sleep. I don't have any sluggish or hangover side effects either. Sherrell G, age 42, DCM, CHF, EF 25%. firstname.lastname@example.org
Jeanette's October 6 reply to Jon's October 5, 1999 - Hi Jon, Thank you for your speedy reply. I asked my cardiologist if I could take the herbs and he said yes, but he never said it would interfere with my meds. I thought if I asked you, maybe someone who takes herbs would see this and contact you or me. I am taking 1g vitamin C a day along with echinaecea and ginger, at 250-500mg a day. I'm just curious if anyone else does the same. Thank you. Jeanette. email@example.com
Harry Jones, October 6, 1999 - Hi, I wonder if anyone on Zaroxolyn has had a reaction to it? I was put on it and after a week, I almost died. I was taken off it pronto. I did like the result. I have CHF and water retention is a big problem. It got rid rid of my fluid pretty good. firstname.lastname@example.org
Phyllis A, October 6, 1999 - Hi Jon and all, I want to thank you all for prayers for my dad. He is doing well. More good news today: his results are back and there is no cancer, praise the Lord! Please continue to pray for his speedy recovery.
To Ginger, I do have insomnia from time to time. I have taken Ambien but not lately. I think it would be best for you to ask your own doc what you can take. email@example.com
Phyllis A's October 6 reply to Jeanette's October 5, 1999 - Hi Jeanette, I would like to know why you can't take a flu shot. My doctors insist I get them every year. In fact, I got mine the other day and when I went for my appointment today to see my doctor, she gave me a pneumonia shot, which she says is also very important for us with chronic health problems.
Maggie, I also had angina pain for months, severely enough to put me in the hospital several times, but since my doc increased my meds I can walk without pain now. Before, I could not walk a half block. Talk to your doc. firstname.lastname@example.org
Karen K, October 7, 1999 - Hi All, Yes, I'm still here reading and posting infrequently. I've taken a part-time job as secretary at my church. It is pretty low stress and I get to do what I love - work on the computer. I'd like to ask all of you to pray for my twin sister. She had a mastectomy in January. Since that time they discovered several more tumors and she has been receiving chemo and daily radiation. Tomorrow they will do another mastectomy and then resume the radiation and chemo treatments. My brother-in-law called last night and said they've been told it is just giving her more time; the cancer she has is not typical breast cancer, spreads more rapidly, and she is fortunate that it has not yet gone to another major organ. I think I've known all along the prognosis was poor but reality really hit last night and I feel like I've been kicked this morning.
As for meds helping one sleep, I've been taking librium and Doxepin at bedtime. I've managed to cut my librium down quite a bit and frequently only need 10mg about 45 minutes before bedtime. If I don't go right to sleep, I take 5-10mg more. The Doxepin is supposed to help with sleep but it is also an antidepressant. I also take Prozac each morning. I know some people can't have flu shots if they are allergic to eggs. I get one yearly and finally have convinced my husband to do the same. I need to get ready for work, so must close. Karen K, cardiomyopathy, EF 34%. email@example.com
Jack's October 7 reply to Ginger's October 5, 1999 - Hey Ginger, If you want sleep, most docs will okay diphenhydramine. That is the number one over-the-counter sleep aid. It is Benadryl. Most of the Tylenol PM and other nighttime pain relievers have it in them but you don't need the pain reliever. Don't buy Benadryl because you only pay for the name. We buy either Compoz or any antihistamine tablet that is at the dollar store. Just look on the back of any antihistamine box for diphenhydramine. Don't buy any combination cold or flu aids, just straight antihistamine. We usually get 30 tablets of 25mg potency at the dollar store for a buck or you can buy 12 Benadryl at the drug store for 5 bucks. Don't hit the doc up for diazapam or any of the other "pams." They are all just the evil little brothers and sisters of valium. Jack. firstname.lastname@example.org
Mary Burn's October 7 reply to Harry Jones' October 6, 1999 - Hi Harry, I also had a run in with Zaroxolyn last week. My Lasix had really stopped working well, so we tried it for supposedly 3 days. Oh it works alright, but it drained a whole bunch of potassium. I dropped from a normal 3.5-5.0 to 2.4. I thought I was going for a dirt nap. So I had to stop all diuretics for 3 days and increase my potassium to 3 doses a day until I caught up. I felt great the first day though. I dropped 7 pounds of water and was energetic and could breathe well. We're going to try again tomorrow with one dose every other day instead. What was your reaction? email@example.com
Maureen Mock, October 7, 1999 - Hi, I am giving a big thank you to all who responded to my post. The support is all that is getting me through right now. It takes me a while but I am sure I will come to terms at some point. The neurologists want to get the muscle sample needed to confirm the type of Muscular Dystrophy from my 19 year old son, whom they suspect has it also. There is no need to biopsy both of us, because whatever type he has, I have, and vice versa. My son does not want to do it. He says if he has it, he doesn't want to know it. He is young and I understand where he is coming from. He will, however, see Dr. Martin and allow him to follow his progress. He has an appointment the 8th of November and maybe after they talk to him, he will agree to the biopsy. If not, I will have to do it.
I have read a lot about this Becker type MD and if he has aquired the gene, it will develop much sooner and be much more severe early on. Males develop symptoms by age 26 and do not survive much if at all beyond their 30s. My own illness is easier to bear than my son's. Thank you again for all the support and for just being there. I will keep you posted as details become available. Love and peace in Jesus, Maureen. firstname.lastname@example.org
Pat L's October 7 reply to Phyllis A's October 6, 1999 - Hi Phyllis, I was told for many years that I was allergic to egg whites so I avoided eggs, angelfood cake and flu shots due to this allergy. My primary care physician so strongly urged me to have one in 1995 after my CHF diagnosis, they had a nurse give me the shot and then remain with me for 40 minutes, prepared to give me some other shot if I had the anticipated bad reaction. I never had the allergic reaction, prompting the doctor to determine I was probably never allergic to eggs in the first place. It is the albumen in egg whites that causes the allergy. Pat L. email@example.com
Phyllis A's October 8 reply to Harry Jones' October 6, 1999 - Hi, I was put on zaroxolyn for severe fluid retention and yes, it does cause weight loss. When my stomach swelled up, I was taking it and lost 15lbs. Right afterward, I was out with hubby for our fifth wedding anniversary and at dinner, I became lightheaded and dizzy. I almost blacked out. Hubby rushed me to the hospital where they admitted me right away with potassium and magnesium depletion. I was taking K-dur twice a day at the time but to no avail. My Lasix has been increased to 160mg in the morning and 80mg in the evening. It still does not take all my fluid off but at least I'm still here! God bless us all. firstname.lastname@example.org
Leland Y's October 8 reply to Cliff Barefield's October 6, 1999 - Hi Cliff, You did not mention your doses nor strength of your medicines. Sometimes we do not have command of our abilities to describe symptoms caused by drugs. The itching and twitching (could be irritability) can be caused by the isosorbibe - which in effect is a long acting nitroglycerine. It can cause itching, which is caused by an increase in blood flow. If excessive, you may feel flushed and hot, following a dose. If allowed by your MD, a Tylenol will decrease the NTG effects of isosorbibe. Beta-blockers like Coreg can cause either drowsiness or sleeplessness. However, after a while your system will adapt, as you said; not as severe occasionally, now. Good luck on new your drug regimen. Leland Y. LLYEE@surfside.net
Leland Y's October 8 reply to Ginger's October 5, 1999 - Hi Ginger, Sherrell G's post on October 5 is a good reply. I regularly take one mg of lorazepam and 25mg Elavil at night for complete rest. Like you, if I have a rotten night, tossing and turning, it seems all my other CHF symptoms are magnified. The Elavil is a booster for Lorazepam. It makes lorazepam much more effective, so less lorazepam is required. Sometimes I can do with 0.5mg of lorazepam, with 25mg Elavil. Elavil is the brand name for amitriptyline. It is very low cost as the generic. Although I understand that lorazepam has been repurchased by American Hope Products and is the only manufacturer now, and has boosted the price back up as if it were a brand name. 15mg of temazepam is also a very low dose. Both of these meds belong to a drug group called benzodiazepines, which are used as a general anti-anxiety drugs, for light sedation and as a skeletal muscle relaxer. They are usually safe to use as long as no alcohol is involved. Leland Y. LLYee@surfside.net
Leland Y's October 8 reply to Jack's October 7, 1999 - Hi Jack, Benzodiazepines are no more dangerous than any other drugs; only abuse makes these drugs dangerous. For people with skeletal muscle disorders, it is considered the number one choice. For people who have panic disorders, it is also the number one choice. The "pams" you mentioned, like diazepam are long-acting benzodiazepine and does cause hangovers. Sometimes acting so long that before it wears out, the patient takes another dose. In this case, I agree with you but the benzodiazepines have their place for low cost management of sleep disorders. At the other spectrum, for those who do not have skeletal muscle tension, I also heartily agree with you about using diphenhydramine. If 25mg of it works well, why use a cannon when a pistol will do the job?! Leland Y. LLYee@surfside.net
Leland Y's October 8 reply to Karen K's October 7, 1999 - Hi Karen, Librium is another benzodiazepam and is an excellent anti-anxiety drug. You did not mention how strong doxepin you were using. Using 25mg of doxepin plus 10mg librium usually works well. Some regimens I have seen increase the doxepin and use the same amount of librium, however be sure to confer with your physician. With your cardiomyopathy and your sister's breast cancer, you do have a lot of stress. Please read Jon's post about "turning outward." It's a great piece of advice. All we have to do is practice it more often, and then it becomes easier to try to help someone else and not dwell on our own doldrums. We are praying for your sister. Leland Y. LLYee@surfside.net
Boots, October 8, 1999 - Hi, I have cardiomyopathy and after having 2 echos done 2 months apart, the second cardiologist said my EF had risen from 35 to 40. I told him that I was still having breathing problems, especially at night, and it kept me from staying asleep. His comment was that it must be from something else other than cardiomyopathy because an EF of 40 doesn't warrant breathing difficulty. Am I losing it or do I need to get rid of this doctor? Thanks and God bless. email@example.com
Staci H's October 9 reply to Boots' October 8, 1999 - Hi Boots, I just read a couple days ago at the "Ask a Cleveland Clinic Doctor" site, that it is possible for someone with an EF of 40 to have breathing difficulties. It is not real common but there are cases. If it helps, I have an EF up around 40 and I have difficulty with breathing also. Good luck to you! Flamioli@aol.com
John Len's October 9 reply to Boots' October 8, 1999 - Hi, Try this Url: http://www.sleepedu.net/forums/apnea/apneainf.html. The site covers a lot of breathing problems, so check it out. Unfortunately, this is the back door to the whole site since this is where I go, so you may want to look in the index for your specific problem. John. firstname.lastname@example.org
John Len's October 9 reply to Betty S' October 2, 1999 - Hi Betty, Before you have the gastric bypass, why not look up some sites and forums on the subject. Education on the subject would be a definite plus. Check the negative aspects as well as the positive ones. Good luck. John. email@example.com
John Len's October 9 reply to Jon's October 4, 1999 - Hi Jon, I have had neuropathy in my feet and legs for over 10 years due to diabetes. As it progressed, my toes would go numb and then start to hurt and get tingly. I always thought of it as an asset because the feeling was nerves trying to regenerate. Nowadays, I would rather have the tingle in my feet than the numbness that has taken its place. At least, I still have circulation in them. Losing that is when the real problems begin. firstname.lastname@example.org
Jon's October 9 reply to John Len's October 9, 1999 - Howdy-doo John, I could live with some tingling. Unfortunately, I get plain old pain. I'd rather do without that, if I can. ;-) Jon.
Al H, October 9, 1999 - Hi Jon and all of Jill M's friends at this site, Today I received an e-mail from her and since it only had my name as receiving the email, I will take the responsibility to let her other friends know. Jill has been one of the old timers at this heart forum. Al H. email@example.com
Sherrell G, October 9, 1999 - Hi, Since it is flu season, I just wanted to encourage and remind everyone to take their flu shots if your doctor recommends one, as soon as possible. If taking the shot will help us not have to fight the "evils" of the flu bug, it sure is worth it. The flu shot is made from dead viruses so you don't get the flu from it. firstname.lastname@example.org
Bill D's October 9 reply to Boots' October 8, 1999 - Hi Boots, The reason you're waking up with breathing difficulties is because you aren't getting the water out of your tissues. Either you are still eating too much sodium or you're not taking enough diuretic, or both. If your doctor thinks an echo reading from 35 to 40 is an improvement and a 40 EF shouldn't cause breathing problems, yes indeedy, you do need another doctor! They could take echos every single day for a month and each result would be different, probably by more than a measly 5 points. Bill. email@example.com
Lydia Moore's October 9 reply to Boots' October 8, 1999 - Dear Boots, When I read you post, the first thing I thought was this person needs to see a new doctor. I don't think shortness of breath or difficulty breathing should be ignored under any circumstances and from everything I have read, I would be inclined to think it is the cardiomyopathy. At least do yourself a favor and get a second opinion. We cannot afford to not be cautious. After all, it is our lives here at stake. God bless you and I wish you luck on getting some answers. I hope everyone at this forum is having a good day. Lydia. firstname.lastname@example.org
Cindy M, October 9, 1999 - Hi all, I was just notified today that before my friendly SSD adjudicator can finish processing my application, I must submit to a psychiatric examination by a doctor of his choice. I've made the appointment but don't know what to expect. Has anyone gone through this and if so, can you please offer me any suggestions or information about it? Thank you. Cindy. email@example.com
Anita F, October 9, 1999 - Hello, I'm new to this site. I just happened upon it and found it very interesting. I have CHF with an EF of 15%. I've had this condition for 6 years. I'm on Zestril, Coumadin, Lasix, Lanoxin, Pacerone, K-Dur, and Aldactone. Has anyone's cardiologist suggested taking Co-Enzyme Q-10? My cardiologist did tell me to take it as it couldn't hurt and just might help. Amaef@aol.com
Gus R's October 10 reply to Cindy M's October 9, 1999 - Hi Cindy, I answered a question very similar to yours a few months back. That answer, with a reply from Jon following it, can be found here. Everything I said then is still true, except for the part about not being re-evaluated. I returned a "Disability Update Report" to SS on August 11, 1999 and so far have heard nothing. The form said they would "notify me within 90 days if we need to do a full medical review now" so I'm starting to count the days. Good luck, and try not to let it worry you too much. Most of us eventually receive benefits but it is often an unpleasant process. Gus R. firstname.lastname@example.org
Staci H's October 10 reply to Anita F's October 9, 1999 - Hi Anita, Welcome to Jon's Place! You will find a lot of information and support from other CHFers here. You may want to start by reading The Manual. There is a ton of info there, and even something about the CoQ10! You also may want to check back through the post Archives. There are many posts about that wonderful enzyme there also. God bless and good luck to you! Flamioli@aol.com
Jon's Note: Also, see Nutrient Stew
Brenda H, October 10, 1999 - Hi all, A few days ago I got an e-mail from someone named Perry about depression. Perry, I sent you an e-mail but it was returned. I just wanted to let you know that I'm coping really well. I went off my antidepressant about 10 months ago, after finding out via the Internet that it could be very dangerous for someone with CHF - it was Imprimine - but I was on a very low dose, so it was easier to go off it. Now it's almost like I didn't need it anymore. I think my main problem was anxiety and panic attacks. Brendakay@wa.freei.net
Helen L's October 10 reply to LeeAnn D's September 23, 1999 - Hi, I have not been on The Beat for quite awhile. In response to Lee Ann's 9/23 post regarding coughing, I had the same experience with Capoten. My cardiologist switched me to Diovan and I noticed almost immediate improvement. I am on 180mg along with Lanoxin, Lasix and potassium. I was diagnosed in January of 1996 and have attained some actual improvement. I am still having some not so good days but more of those better ones. My thoughts and prayers are with you all. Helen L. email@example.com
Patti S, October 10, 1999 - Hi all, I have never done this before, so please excuse my ignorance! I am 30 years old, have postpartum cardimyopathy and had congestive heart failure - I guess I still do, actually. I am clueless about everything that is happening to me. I take Vasotec and Lasix, and I just stopped blood pressure medicines for the time being. My EF is 30 to 35% but I do not even know what that means. My condition is "moderately severe." Again, what is that supossed to mean?! Does that mean moderate or severe? Can anyone enlighten me? Please, I am really scared. Please e-mail me with any information. firstname.lastname@example.org
Susie T, October 10, 1999 - Hi, I know there are 4 different levels of CHF, but what EF goes with which level? Such as class one would be about an EF of what and then for class 2 and so on, or is there any guide line? I also wanted to welcome all the newcomers and let them know that they have our prayers and support. May God bless you all. Also, I couldn't find out about ischemic cardiomyopathy. I knew what dilated cardiomyopathy was and finally found that ischemia is more like restrictive cariomyopathy. If I'm wrong, let me know. email@example.com
Jon's October 10 reply to Susie T's October 10, 1999 - Hi Susie, There are clinical classes and functional classes of heart failure. Usually, classes is used to mean functional classes. They are described here. Clinical classes are usually bandied about by doctors only. <g> I think the American Heart Association site has them described somewhere but I can almost never get their site to connect. Ischemic cardiomyopathy is usually the same as dilated cardiomyopathy. The "ischemic" refers to the cause, which is ischemia, or poor blood flow to the heart - usually from blocked or partly blocked coronary arteries. A lot of people who suffer heart attacks get heart failure from ischemia - the part of their heart dies that was denied blood flow before treatment, leaving a severely weakened heart. Try a search engine using "CAD" or "Coronary Artery Disease" also. I hope this helps. Sometimes I just further muddy the waters. Jon.
Jill M, October 10, 1999 - Dear Jon and all my other old and dear friends, I have been overwhelmed by many messages of support, love and comfort and I'm so grateful for them all. I'll try to reply to each of you individually when I have the time. My bio is 2 years old, but it describes John's kidney failure from which he had suffered for 8 years. No one ever heard him complain and he worked right to the very end in a very demanding job, but one which he dearly loved. Although he had been feeling increasingly unwell, he went to work as usual on Thursday and spent the morning in meetings. At lunchtime, he went to his car to go to dialysis, and a few minutes later one of his colleagues who was parked next to him found him sitting behind the wheel of his car, where he had quietly passed away. His doctor believes it was sudden cardiac death. It is such a blessing that he died so peacefully with no pain, and also that he wasn't driving. May I quote from a newspaper article?
"UCT [the University of Cape Town] deeply mourns a most distinguished memeber of the university. John was a world-renowned scholar and researcher in his field. He was a wonderful human being whose wisdom, humanity and insight have been of inestimable value to us all."
I was so fortunate to have been married to him for 38 years, and I have only happy and warm memories of him. Thank you for this space to pay tribute to my beloved husband. Jill M. firstname.lastname@example.org
Ryan Johnson, October 10, 1999 - Hi, I would like to ask patients, doctors, and researchers to browse my site about heart failure at http://library.advanced.org/27533/ We have had a very large turnout and have already touched many lives. Let us help you as we have others. email@example.com
Linda's October 11 reply to Brenda H's October 10, 1999 - Hi Brenda, My cardiologist believes that my CHF in 1997 and present cardiomyopathy were caused by a toxic dose of imipramine! I was on 250mg for about 6 months to manage major depression. It was within the recommended dosage but nonetheless, it was enough to cause significant damage to my heart. My LV chamber is stiff and hardly beats at all right now. I am on Coreg and CoQ10 to help ease the pressure on the rest of my heart, and Effexor XR for the depression. firstname.lastname@example.org
Karen K's October 12 reply to Linda's October 11, 1999 - Hi Linda, I read with interest your post about a toxic dose of Imipramine having caused your cardiomyopathy. Prior to my CHF and diagnosis of cardiomyopathy, I also was on Imipramine at a dose of 200-250mg a day as I best recall. When I entered the hospital, the Imipramine was taken away from me pronto but the doctor did say, "And no, it wasn't caused by the Imipramine." I hadn't asked if that is what caused it. He made the comment as he was walking out of the room. It won't change things now and would serve me no purpose to pursue the issue. I had a cardiac cath done and they weren't able to pinpoint a cause so it has been attributed to a virus, but your post does make me wonder. Karen, EF 34%. email@example.com
Christy, October 12, 1999 - Hi, For all you pre-menopausal females with CHF, I thought I'd pass along my experience. I have been having extreme fatigue associated with menses, which I had thought was directly related to being on Coumadin. I stopped the Coumadin about a month ago, but recently the fatigue was as bad if not worse. Extreme fatigue for me was having to drag myself from room to room, when a few day before I'd been able to walk on the treadmill for a half an hour at 2½ mph. Fatigue with menses is common but I thought this was a bit extreme. My gynecologist is emphatic that I must stop menses (there are several medications or procedures to do that) due to the excess load it is placing on my heart trying to recover from blood loss. I only bring this up to encourage anyone with a similar reaction to please talk with your gynecologist soonest. Christy M, EF 20%. breeZip@hotmail.com
Mina Kay's October 12 reply to Jon's October 9, 1999 - Hi, I also have peripheral neuropathy; at this point, pain at different times and places in my feet. I have found a medicine that has helped me. It's called Tegretol and it is a drug originally for epilepsy, which I don't have. I started at one pill after dinner and one at bedtime. These are 100mg pills. Now I take 3 of these pills at those times. The pills are chewed up rather than taken with water. This pill is a generic and one can also take a much more expensive pill, also originally for epilepsy called Neurtonin. Tegretol has allowed me to walk, sit, and sleep comfortably. I hope this helps. MinaKay. MinaKay@aol.com
Phyllis A, October 12, 1999 - Hello Jon and friends, I need for you all to continue to send up more prayers for my dad. He took a turn for the worse. He is also a dialysis patient and it is complicating his recovery. He had to have a tube placed in his nose down into his stomach and then tonight, a scope placed down his throat to see to bring up accumulation of mucous that was literally drowning him. Tomorrow he needs yet another procedure called a spinal tap. He has been through so much and he is a little guy, he is suffering so much. We need your prayers, please. firstname.lastname@example.org
Don G, October 13, 1999 - Hi, I found Amazon.com now listing the new book, "No Salt Lowest Sodium Cookbook" for pre-orders. Anyone interested in getting the book as soon as it's available might want to go to Amazon.com, type in the title of the book or author (Gazzaniga), and reserve a copy. Amazon will then notify them when the book is ready and confirm whether they still want it or not. You were all a huge help in getting this book off the ground and in print. Donald Gazzaniga. email@example.com
Jon, October 13, 1999 - Hi everyone, I'm a bit dozey lately from the flu but I ain't dead yet! <g> If there are Web TV users out there, please contact me. I am getting mail from some who are having trouble with my Java-based Chat Room and think it is probably due to their Web TV setup. Unfortunately, I have no knowledge whatsoever of Web TV. I'll put you in touch with those having problems, if you are willing. Thanks, Jon.
Brenda L, October 13, 1999 - Hi everyone, I haven't posted in over a year but I do check in often. I appreciate having this site to turn to. My health has been in the tank for the last 2 months. It seems my very small daily dose of amiodorone did a number on my thyroid and I now suffer from hyperthyroidism in addition to CHF, atrial fib and IDC. It seems to affect every part of my body but most importantly for me, has done a number on my heart. My EF has dropped to about 35. We had nursed it up to as high as 50% over the past 5 years. With that background, here's my question.
Although I've fought it for 5 years, my cardiologist and I are now considering the possibility of permanent disability, as performing my day-to-day duties is becoming tougher and tougher. I am fortunate enough to have a very generous private insurance policy through my employer that is a "same job" policy, meaning that if I can't perform my current job (PR/communications manager), I qualify for benefits. The insurer is UNUM. Has anyone had any experience making such a claim, with UNUM or not? How many hoops do they make you jump through? Any info anyone has would be greatly appreciated. If I do go ahead with this, we're expecting a fight - not so much because the medical facts don't stand up but because I'm only 42 and the policy would have to pay off until I'm 65. firstname.lastname@example.org
Bill D's October 13 reply to Mina Kay's October 12, 1999 - Hi Mina Kay, I also take Tegritol or the generic called carbamazine. I take (4) 200mg pills a day - one at meals and the last one when I go to bed. I don't have to chew them up. I started taking them in 1992 and they are still working beautifully! When I started, I couldn't wear shoes. Now I can and I can forget about my feet. I learned about Tegritol from talking to a girl on the Net. I asked my doctor to try it and he gave me a prescription. It works better than most of the expensive medicines I take. <g> Bill D. email@example.com
Jo, October 13, 1999 - Hi, I have just found this site and I thank God for it! I was diagnosed with idiopathic cardiomyopathy 7 years ago at the age of 40 and put on several different meds until we found one that worked for me. Since that time I have ben relatively stable untl recently. In the last 3 months I have begun to have shortness of breath even at rest, with chest discomfort sometimes lasting days, and fatigue has been a major problem. I can feel good and in a few hours time I am so exhausted I liteally can't stay awake. I have found this site so comforting because I thought I was losing it or something with the symptoms I have, but now I understand they are for real.
I too have suffered from leg pain and tingling for a few years, but the doctors never seemed to understand why. In the last couple of months, I have started having a lot of muscle twitches also. I just had a stress electrocardiogram done and I failed it. I blacked out and they had to lay me down so I wouldn`t fall. I am now scheduled for a cath to determine just what they can do for me. This is my second cath but this time I am worried. Also, when I am having a bad day, my voice gets incredibly deep. Has anyone else noticed their voice changing with increased symptoms? I could sure use any info anyone has or help on what to expect now that symptoms are getting to this point. God bless you all and this site. At least now I know I'm not losing it! These strange symptoms are real! firstname.lastname@example.org
Lydia Moore's October 13 reply to Karen K's October 12, 1999 - Hi Karen, I am also curious about this imipramine thing. I was on it for 12 years and when I was diagnosed with cardiomyopathy, it was immediately removed from my medication regimen. However, I was only taking 150mg a day. I was also told they did not know the cause of my CHF. It is rather curious. Like you say, what difference would it make at this point? I do think it is important for us to look into it for further prevention in case there is some validity to it. God bless everyone on this site. Lydia. Gemini49z@yahoo.com
Linda's October 13 reply to Karen K's October 12, 1999 - Hi, My doctor knew of other drug-induced CHF cases, so when he went through my history (no family history, no lifestyle risks) and found out what I was taking, he immediately said "That's it." At the time, the recommended range for iminpramine was 150-300mg, so it didn't seem to be a problem. However, I have noticed in several places that they have reduced that range. Some go only to 200mg; some mention heart-related side effects. I think it's a relatively new side effect that isn't very well known yet. It is interesting that they took you off it immediately. Also, they often say "virus" when they know no other cause. My doctor said he would have to chop my heart up and examine it to know for sure it was a virus. email@example.com
Lori Pearson, October 13, 1999 - Hi, Just to let you all know, I am using a new e-mail address: firstname.lastname@example.org
LeeAnn D, October 14, 1999 - Hi everyone, I'm back to my usual self. Did I thank your for the gentle kick, Jon? Well, between you and my shrink saying in a nicer way, "Oh just quit feeling sorry for yourself and focus on someone else for a change" it really did help. A new question for all you CHF people with memory problems. Last week I left my keys in the front door 3 times and this morning I overslept getting my kids to school cuz I forgot to set my clock. Does anyone take ginko biloba? LeeAnn, DCM, ICD, EF 30, age 38. email@example.com
Jerry Fryar, October 14, 1999 - Hi, I am new to this site. I am 50 with CHF. My EF is 20. I wear a 2mg nitroglycerine patch but I get very bad headaches. Does anyone have any experience with this? Thank you. firstname.lastname@example.org
Bill M, October 14, 1999 - Hi to everyone, Well, it's been awhile since bypass surgery and I've been home while too. I went to a casino last Monday and while I got tired, I was still able to have fun. I'm up to ¼ mile walking daily. I see my cardiologist next week for my first stress test since surgery. I did get approved for state disability through the year 2000 but am still waiting for a SSA decision. They said I was in limbo till December and they are waiting for the doctor's reports at that time. I have Medicaid now - of course, no one wants to take it. <g> Thank goodness my surgeon and cardiologist take it, but it looks like I will have to find a new primary doc. His nurse said he won't take Medicaid and before, I was paying the freight. I hope each and everyone of you feel better and get better soon. Oh ya, say how about a free copy of the low salt book pal? <lol> Had to try. Bill. email@example.com
Gus R's October 14 reply to Jo's October 13, 1999 - Hi Jo, Several things in your post rang a bell with me, so here's a few of my thoughts. About your comment "At least now I know I'm not losing it" - It's always good to be reassured that one hasn't gone completely around the bend, but a PCP gave me the best advice on this that I've ever heard. I went to him about some weird symptoms I was having and told him I sometimes thought most of my problems were in my head. He said he didn't think so and was sure this one wasn't, but it makes no difference what causes the symptoms. If you have them, they are real, and need to be investigated no matter what is causing them; Then cure the problem if possible and if not, try to relieve the symptoms. Sounds good to me.
Regarding "Since that time I have been relatively stable until recently" - We are all different with different problems but I have changed meds 4 times in 7 years. My biggest problem is a-fib. When I have it, everything goes to pot and when I don't, I still have problems but life is much better. My best period was when I first added Betapace to my meds. After some tweaking of its dose along with some other meds, I had 2 good years with only occasional a-fib. Then it became more common and then reached the point that I was in a-fib more often than not. We did some more meds tweaking and finally dumped the Betapace and added Toprol XL. That worked fair for a couple of years. I've now been back on Betapace at a much higher dose for 6 months and am doing pretty good again. It may not help you at all, but from my experience, a good tweaking of your meds like you did 7 years ago would be worth a try if your dox haven't already tried it.
Regarding your cath, the first one should be the hardest but I was more concerned about the second one too, and have now decided that the next one is always the hardest. My approach to a cath is to tell everyone concerned with it that the less I know about it, the better it will be for us all. I don't know whether they zonk me more than most, or use something that erases my memory of it but the end result is that I know very little about the time period between the prep and the recovery. That pretty well eliminates the worries about the procedure for me. Worrying about the results of the cath is another subject.
Stress tests: My first one was just like you described and it took me 2 weeks to recover from it. During the second one, I knew when to say when and had no after effects from it. The third one was with a chemical instead of physical exercise. It knocked me out for a brief period at the end, but there were no after effects. You might ask your dox about it next time.
About that voice change, I always thought it was my hearing that changed; my eyesight too. It's about time for me to have my lenses changed but when I feel good physically, my vision is fine. The bottom line is: try not to worry too much and keep hanging in there. I've had a lot of ups and downs, and today is a great day. Of course, I lost it long ago, I'm nuts you know. ;-) Gus R. firstname.lastname@example.org
Matthew, October 14, 1999 - Hi, I am 29 and developed my cardiomyopathy back in 1991. Generally I respond well to my various medicines and I just moved from lopressor to Coreg. However, in the past few months, I seem to have developed a case of liver congestion, where fluid backs up in the organ and causes pain, indigestion, headaches, and all around discomfort. Has anyone else experienced this? What did their cardiologist suggest/recommend/do? email@example.com
Jon's October 14 reply to Matthew's October 14, 1999 - Hi Matthew, Although this can be caused by many things, including meds, or oncoming liver failure or oncoming right-sided heart failure, I have had the same problem and my CHF cardiologist decided it was from me retaining fluid. He drained me and upped my Lasix. It worked for me. He did give me a thorough physical exam and quick echo first, though. Jon.
Kathryn C, October 14, 1999 - Hi, I usually post to the loved ones' page but something told me to look in here today. Boy, am I am glad I did! My son (25 years old) was diagnosed with CHF in August. He went through the CCU, cardiac cath, etc. His EF was 18% and he was on Desipramine/Imipramine/Norpramine - these are all basically the same, tricyclic antidepressants. My son was on this medication for 10 years at 375mg a day. That's 75mg over the maximum recommended dose. His cardiologist calls his CHF idiopathic and no one would own up to the possibility that the drug induced his CHF. He has no other health issues that could have caused his CHF except possibly viral, and as far as we know, they did not do a tissue biopsy while they had the heart cath in. I suspect the drug caused his CHF and probably yours too. I know there is little to gain by ranting and raving, and the damage has been done but don't you think the drug companies should take responsibility for the damage their medicine has done? The other biggest issue I see is to make sure other people do not continue to take this harmful medication. Certainly the medical community should be warned and made aware of this drug complication.
We were warned to stay away from Effexor as it has some nasty side effects as well. My son was being titrated off the Desipramine to Effexor at exactly the same time he was in crisis with CHF. This is a scary situation. There are plenty of other antidepressants to try. Sometimes just a good therapist is more helpful or a support group. Thank God for this Web site. Kathryncole@hotmail.com
Jon's October 14 reply to Kathryn C's October 14, 1999 - Hiya Kathryn, I hope everyone reads both sides of The Beat Goes On. Splitting it was really a matter of convenience for myself, although the suggestion came from Bill D, as did a surprising number of "my" best ideas. <G> There's a different perspective and some different issues from one side of the forum to the other and getting that fresh perspective helps me sometimes, I know.
I have no personal experience on the antidepressant issue, although I have been on a couple with no benefit. I think with any drug, you risk serious complications and whole new health issues, a fact that is seriously underplayed in our society in general. Lifestyle changes are often more effective than Rx drugs but they take a lot of self-discipline and that's in short supply around the USA these days, if not everywhere. I have had to drop both Aldactone and Lanoxin in the past 6 weeks due to side effects that did not surface until literally years into therapy with them. On the other hand, I had to stop taking Sinemet after only 48 hours due to some truly awesome side effects that my doctor had never seen surface before.
Drug companies are out to make money, period. They aren't into helping people for the sake of helping people. Still, where would we be without them and their profit-seeking? Probably dead - at least, I probably would be. I agree completely that potential patients need to be made thoroughly aware of potential dangers inherent in taking Rx drugs of all kinds. But that's up to everyone in the drug chain, so to speak. Doctors need to look less for the magic bullet and more for a real cure of underlying illness, Rx companies need to realize that they do have responsibilities to their customers, pharmacists need to take time to speak up about potential problems every time you pick up an Rx - whether their employer allows them that time or not - and finally, us consumers need to self-educate every time our doctor hauls out that Rx pad! Maybe if we realized the risks, we would choose a different route to coping, other than drugs. Everyone previously mentioned is in some part responsible for making us aware of those risks before we pop that pill. Hey, I guess I'm just rambling, so I'll sign off. Jon.
Pat L, October 15, 1999 - Hi Jon and everyone, I haven't been feeling good lately, after a couple of months of doing very well. I complained to the doc at my last appointment about my shortness of breath. He said I shouldn't be having any shortness of breath with my EF up to 53. He scheduled an echo and my EF is down to 30. He said he rarely sees a drop like that in 2 months. I am wondering why my EF showed as 53 in July and 30 now! Complete restructuring of my meds again, I guess. Sometimes the hardest part for me is the changes in meds over and over. Pat L. firstname.lastname@example.org
Lori P's October 15 reply to Jerry Fryar's October 14, 1999 - Hi Jerry, It seems that everyone I know who has tried the nitro patch (all ages) has experienced bad headaches. The nitroglycerin sublingual tablets that you place under your tongue have the same effect, almost like a "head rush." When I complained of this, the cardiologist put me on Imdur. It's a long-lasting anti-angina med, without the horrible head pains. I always dreaded when faced with the decision - nitro and a headache, or bad chest pain? Good luck. email@example.com
Linda's October 15 reply to Jon's October 14, 1999 - Hi Jon, Well said. I think that we also have to realize that up until the last 10 years or so, very few people got CHF. Most died from heart attacks. All the research went into bypass surgery. Now that people are living much longer, the incidence of cardiomyopathy and CHF have skyrocketed. Attention has turned to these now, especially since Medicare is being hit hard by these new expenses. I don't blame the drug companies or the doctors per se. We all want that new drug that can save us from our particular disease as soon as possible. Some drugs take years for long-term side effects to be known. Perhaps we are just starting to get some clues into some of these cases of cardiomyopathy with "no known cause." I posted my information on imipramine only to make people aware of what had happened to me. Maybe imipramine will have no effect on some people. I became nearly suicidal on St. John's Wort. Figure that one out. We are all different. I know now that if I have to take a high dose of a medication, it may not be the right drug. I think we all have to share our knowledge and work together to find answers. Awareness and listening to our bodies is the key. Blame only leads to anger, and that doesn't help us at all. firstname.lastname@example.org
Jon's October 15 reply to Linda's October 15, 1999 - Hi Linda, Definitely. That's one thing I really like about WWW forums like this one - I have the chance to talk to a really wide range of people and see if anyone else has experienced what I have gone through. It turns up some interesting and often useful information. Where else can you find other people who may have something like imipramine-induced cardiomyopathy?! The more forums focused on our illness, the better! Jon.
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.