Jon 8-17 update
Jon 8-19 update, DOS question
Tom S 8-19 adult-onset diabetes question
Chase G 8-19 mitral valve repair questions
Susan P's 8-19 reply to Dee K's 8-9 fingernail color
Debbie Herrman 8-19 intro, diet questions, & more
Bev T 8-19 to Joe S, humidity & more
Pam C 8-19 "t-waves" question
Pauline 8-20 bad days and atmospheric pressure
Walt Larsen 8-20 intro
Susie O 8-20 stress test concerns & more
Jon's 8-20 reply to Susie O's 8-20 stress test concerns
Lori P 8-20 water retention after heart surgery question
Luc D 8-20 to Lydia
Margaret 8-20 has anyone had non-heart surgery after getting CHF?
Eris 8-20 spironolactone plus diuretics question
Jon's 8-20 reply to Eris' 8-20 spironolactone plus Lasix
Dee K's 8-20 reply to Susie O's 8-10 oxygen levels, update
Mike Dillard 8-20 intro
Rita 8-20 seek CHF doc in Oklahoma City
Phyllis A 8-20 how often should I see a CHF doc?
Julie Kendall 8-20 upper body swelling, doc won't listen
Jon's 8-20 reply to Julie Kendall's 8-20 upper body swelling & more
Linda O's 8-20 reply to Carolyn H's 8-9 urinary tract infections & more
Al L 8-20 update, CoQ10
Harriet's 8--20 reply to Jon's 8-10 water intake vs Lasix
Eli A 8-20 intro, pacemaker/ICD & more
Pauline N 8-21 CRP blood test question
Marty 8-21 cardiac rehab question
Shirley G 8-21 chemo-induced CHF, disease progression questions
Leland Y 8-21 new docs, proper care & more
Jon 8-21 bios, recipes & thank you
Robert W 8-21 life span question
Mina Meyer 8-21 too low BP? & more
Vicki M 8-21 chemo-induced CHF & more
Jon 8-22 update & am excited about new search tools
John Len's 8-22 reply to Tom S' 8-19 diabetes, heredity, locale, & to Jon & Luc
Mina Meyer 8-22 small addition to last post
Joe S' 8-22 reply to Bev T's 8-19 moving to fairer clime, stomach gas questions
Greg B 8-22 seek software to help plan my diabetic diet
Jan C 8-22 SSD questions & bronchitis
Jon's 8-22 reply to Jan C's 8-22 SSD info & bronchitis
Helen O 8-22 update, near-faints, upcoming tests
Ben B's 8-22 reply to Pat C's 8-19 abnormal t-wave possibilities
Judy M 8-22 things to do surfing the Web
Joe S' 8-22 reply to Bev T's 8-19 moves, pooches, allergies & humor
Janice F 8-22 atenolol experience & questions
Jon's 8-22 reply to Janice F's 8-22 atenolol
Pat D 8-22 scary experience, questions
Bill ? 8-22 just got the diagnosis, intro & more
Sara 8-22 update, doctors & more
Pat L's 8-23 reply to Mina's 8-21 BP & meds
Jack's 8-23 reply to Pauline N's 8-21 blood tests, meds
Hope M's 8-23 reply to Margaret's 8-20 surgery with CHF, MedicAlert bracelets
Paul M 8-23 alpha-lipoic acid for diabetics
Lori P 8-23 CHF question
Jon's 8-23 reply to Lori P's 8-23 going in and out of CHF
Ginger's 8-23 reply to Shirley's 8-21 chemo-induced CHF, chats & more
Donna 8-23 intro, brief history, questions
Jon's 8-23 reply to Donna's 8-23 some advice
Jon 8-25 forms were down awhile yesterday, back now
Debbie H 8-25 intro, fatigue questions & more
Bob H 8-25 broken pooter, procedures, update
Helen O 8-25 had a cath, awaiting results & more
Marty K 8-25 work comp/Disability struggle, update, questions
Jon's 8-25 reply to Marty K's 8-25 finding information to aid you
Rod Butler 8-25 questions and RFA for a-fib & CHF
Donna A 8-25 intro, questions, great site
Don G 8-25 update on low sodium cookbook
Joy R's 8-25 reply to Dee K's 8-20 oxygen saturation levels & more
Sherrell G 8-25 seek advice about tingling & numbness in limbs
Janice 8-25 intro, history, high BP, Jon's recipes & more
John 8-25 update on drug trial
Phyllis A's 8-25 reply to Shirley G's 8-20 adriamycin for breast cancer, got CHF
Ben B's 8-25 reply to Jan C's 8-22 SSD, lawyers & more
John Len's 8-25 reply to John's 8-25 diet questions
Danny 8-25 SSD Disability case review question
Jay Kelly 8-25 intro, what to ask my cardiologist?
Bill C's 8-25 reply to Sherrell G's 8-25 tingling & numbness in extremities
Linda's 8-25 reply to Julie Kendall's 8-20 swelling other places besides ankles
Candy P 8-25 update, upcoming surgery
Diane J 8-25 intro, meds questions
Jon's 8-25 reply to Diane J's 8-25 diuretics & ACE inhibitors
Donna M's 8-25 reply to Rod Butler's 8-25 atrial arrhythmias, RFA & more
Pat D's 8-27 reply to Debbie H's 8-25 fatigue, exercise, supplements
Carolyn B 8-27 chest wall pain questions
Gus R's 8-27 reply to Donna M's 8-25 a-fib, flutter, tachycardia, ablation & more
Harriet's 8-27 reply to Candy P's 8-25 open heart surgery
Ginger's 8-27 reply to Sherrell's 8-25 tingling & numbness in extremities
Phyllis A's 8-27 reply to Diane J's 8-25 fluid intake, diuretics & more
Jon's 8-27 reply to Phyllis A's 8-27 dehydration, consistency
Pat 8-27 what should I expect from CHF?
Dee K's 8-27 reply to Joy R's 8-25 thanks! 02 levels & use, & more
Greg B 8-27 found some diabetic meal planner software
Jim Hall 8-28 update, great news!
Clarence Martin 8-28 questions about sauna & fluid retention, & herb use
Phyllis A 8-28 to Shirley G, chemo & more
Phyllis A 8-28 to Vicki, need e-mail address
Joe S 8-28 diet problems, overdoing, & to Ginger
Doug K 8-28 hey Muriel!
Joy R's 8-28 reply to Dee K's 8-27 oxygen saturation questions & more
Ruthie A 8-30 diastolic heart failure articles
Mark N 8-30 CHF from lifestyle - anyone else?
Candy P 8-30 SSD, keeping health insurance, edema & more
Christine 8-30 to Paul M, insulin, alpha-lipoic acid questions & more
Kim D 8-30 meds & tests questions & more
Donna M 8-30 seek those who had problems with Coreg
Claudia S 8-30 blood clots in heart & Coumadin, Lanoxin questions
Pat D's 8-30 reply to Clarence Martin's 8-28 saunas, heat & CHFers
Jon's 8-30 reply to Kim D's 8-30 meds questions possibilities
Jon's 8-30 reply to Claudia S' 8-30 Lanoxin/digoxin for CHF
Kylie Needham 8-30 thanks, cholesterol lowering drugs questions
Lydia Moore 8-30 intro
Jack's 8-30 reply to Clarence M's 8-28 ginseng & saunas
Connie R 8-30 intro
Jon 8-30 using Urls on the message boards here
Heather S 8-31 update, weight gain, rehab, daughter's illness
Jon's 8-31 reply to Heather S' 8-31 daughter's illness - possibility
Tom S 8-31 on a light note
Mark N 8-31 ACE inhibitor dose question
Jon's 8-31 reply to Mark N's 8-31 ACE inhibitor dose
Susan P 8-31 Url of interest
Jon, August 17, 1999 - Hi everyone, I'm alive, just thoroughly miserable. Two trips to an ER and a doctor's office visit have left me healing but wasted. I started the search for a new primary care physician, in the middle of this painful mess. Apparently I hurt my regular doc's delicate feelings. So it goes. I hope to begin catching up on posts and e-mails sometime this afternoon or evening. For what it's worth, my dawg is now in excellent shape, my daughter is rapidly improving and I am hanging on by my chin whiskers. Back soon, hopefully later today. Jon.
Jon, August 19, 1999 - Hi, I'm now able to sit up and type for short stretches, so I'll be putting up some posts. Still, I probably will pick and choose to decrease my backlog, which is a bit large. ;-) If you don't see your post, please be patient since I am starting with the oldest ones first. If I don't answer an e-mail or post and you need an answer, please send it to me again with a reminder that this is your second try. Thanks.
If anybody remembers this far back, I need some DOS help. I need to have a batch file automatically answer a Y/N query as Y, and perform the next function, which is to continue a pooter boot (autoexec.bat in Win95). Does anybody remmber how to do that? A 5 second timer would also be nice on that command. Jon.
Tom S, August 19, 1999 - Hi, After reading lots of posts on this forum concerning diabetes and diabetics, it seems like I may be about to join those ranks in the near future. After 3 blood tests indicating high blood sugar I am going to go through the ole glucose tolerance "drink a gallon of yuck" test, then become a human pin cushion for 3 to 6 hours. Actually, I am curious if Coumadin is responsible for the possible onset of diabetes in an otherwise diabetic free life? email@example.com
Jon's Note: Lack of exercise and obesity are 2 major contributors to adult-onset diabetes. My blood sugar is really high also.
Chase, August 19, 1999 - Hi, To anyone out there who has had mitral valve repair, I have a problem with low blood pressure; 90s over 60s and a fast pulse rate of 105 to 185. Does this get better in time or stay the same? It has been 3 months. I'm down to one med, Rhythmol, and hope to be off that soon. Has anyone had a similar experience? I would appreciate any input. Chase G, EF 45%. firstname.lastname@example.org
Susan P's August 19 reply to Dee K's August 9, 1999 - Hi, I remember a long time ago, my doctor was always checking the color of my fingernails. He also checked to see if my fingers had clubbed. He seemed quite pleased that they had not. I don't remember what all of it was about. It might have been circulation and blood pressure. Maybe someone else knows what the big issue was. email@example.com
Debbie Herrman, August 19, 1999 - Hi, I was diagnosed with CHF and cardiomyopathy in September of 1997 due to to viral pneumonia. When I first went in, I was sent to a heart specialist. The only med I was on was Bumex. Then I went in for tests and was put on Bumex, Vasotec, Lanoxin and Klor-Con. In May of 1997, I was put on Coreg, which was increased to 25mg twice a day. I feel very good. My blood pressure in April was 112/82 and my pulse was 90. For the last 2 visits there have been 3 and 4 months in between. My question is, with these meds should I have any blood work done? It has occured to me that only twice has my Lanoxin been checked and I have had no other tests of any kind done except pulse pressure and they listen to my heart. Is this the norm? I am going to ask my ejection fraction when I go back on September 2. They never even told me there was such a thing. I am glad to hear that my tiredness is not just in my head. When my doc first saw me, he said I would probably not last 5 months, and I have lasted almost 2 years. I have continued to work. I have a licensed daycare in my home. I would never make it if my mother, aunt and 2 daughters, who are in their early 20s, would not help me. I would like to hear from any of you. Also, I an overweight. I have lost 70lbs and need to loose another 80. This loss has taken me almost 2 years. I have cut out salt a lot. I am just now starting to walk on my treadmill but I am afraid of getting my heart at target range. I am going to ask my doc about this also. What is the word on the Atkins' Diet? I go back and forth on it, Richards Simmons and Slimfast. What other good diets are out there? I hope you write back. Polybrid@hotmail.com
Bev T, August 19, 1999 - Hi Joe S and everybody else, I've just returned to Florida from spending 7 weeks in the beautiful West Virginia mountains. While there I had no real problems breathing or with extreme fatigue. Now, after being back in this humidity, I'm already dragging. I know part of this is because I've gone back to teaching but the time in the mountains with cooler air and no humidity really does make the body feel much better. A real wake-up for early retirement, huh? Bev. Mtnmama008@aol.com
Pam C, August 19, 1999 - Hi, I was supposed to get a stress test done Tuesday but it got cancelled when the tech saw abnormal t-waves before I even got on the treadmill. Does anyone know what this means on an ECG? She didn't say how they were abnormal, just that it had to do with repolarization. They've sceduled me for a MUGA on the 25th. Pam C. firstname.lastname@example.org
Pauline, August 20, 1999 - Hi, Has anyone else noticed a correlation between having an off day and low atmospheric pressure? email@example.com
Walt Larsen, August 20, 1999 - Hi, I have been only recently diagnosed as having CHF and still know little about it. I'm checking in here to learn what I can and to perhaps learn from others' experiences. Thanks; I didn't expect to find an email list specifically devoted to CHF but then again, what isn't there a list for? <g> firstname.lastname@example.org
Susie O, August 20, 1999 - Hi, After being in the hospital overnight due to chest pains (my heart was fine), the doctor in ICU scheduled me for a cardiolyte stress test. He believes my chest pain came from an infection around the lungs. I'm confused and a little worried about the test. Being on carvedilol, fosinopril NA, digoxin & aspirin therapy has slowed my pulse down to about 75bpm and my blood pressure down to around 110/77. Being on these meds seems like it would prevent my vital signs from going up to much during the stress test where the doctor could not tell if there was too much stress put on the heart. Can you help me out with this one? I stay so confused with this heart stuff. Thanks - be better soon. email@example.com
Jon's August 20 reply to Susie O's August 20, 1999 - Hi Susie, Even with your artificially low heart rate and BP, they will get useful results from a stress test. I take 50mg Coreg twice a day and 40mg Monopril daily, so my BP stays around 100/70 and my pulse rate roughly 90. Still, my CHF doc got what he considered very useful info from from my last stress test. I had the test done because of chest pain also and it turned out I had an infection making my lungs hurt; totally non-heart related, so it does happen. Jon.
Lori P, August 20, 1999 - Hi, I was wondering if water retention following open-heart surgery is usual for heart patients. I was doing fine but all of a sudden I'm swelling up again. The doctor increased my Lasix and Potassium, and I'm to wear a holter monitor for 24 hours because I've been experiencing rapid heartbeats again. He said it could just be my heart reacting to the water overload. Thanks for any input. firstname.lastname@example.org
Luc D, August 20, 1999 - Hi all, Lydia, I'm very glad with the note you wrote me! I live in Torhout; that's a city not far from Bruges, where I was born. You can find out what you want about me and my health. I have written a bio of my life. There are some pictures of me and my family there. I hope you will like them. Like you will see on my bio, I have hypertrophic cardiomyopathy. They cannot cure this disease. All they can do is give me some medications to help me with my chest pains and fatigue. I just have to live with this disease. My medications are 20mg Zestril and 240mg Verapamil. I try to take some vitamins too. I realy don't know if they help me. I don't know if you write in Dutch? I always try to do my very best to write in English. Did you ever come back to Belgium? It's a big dream of me to see the USA. I have 2 very good friends there; one from Arizona and one in Michigan. For the moment I cannot go there, it's so expensive - the trip, I mean. I will let you go for now Lydia. Take care and thanks again for writing to me. Your new Belgian friend Luc.
PS. I could not send you an e-mail - the address bounced. Please send me your e-mail address. Luc.email@example.com
Margaret, August 20, 1999 - Hi, I have postpartum CHF (heart failure beginning 9/98) with an ejection fraction of 25 to 30% in April of 1999. I also have chronic ITP (low platelets). My last platelet count was 23,000. I am scheduled for neck surgery in late September. Has anyone had surgery that is not related to heart failure? How will my heart condition affect recovery from surgery? Needless to say, I am anxious. firstname.lastname@example.org
Eris, August 20, 1999 - Hi, I just saw my cardiologist and after I told him I was feeling pretty tired a lot of the time and having some trouble breathing, he decided to raise my Coreg from 12.5mg twice a day to 12.5mg in the morning and 25mg in the evening. Then my friend who was with me asked him about spironolactone since we had heard about it on the news and from the article(s) Jon has posted. So the doctor said that he had been prescibing it since 1975 and was now giving it to most of his patients again. He said I should take 25mg a day in addition to the other drugs I am taking. At the time, he did not mention that it was a type of water pill. Now I am concerned about taking this in addition to the furosemide that I take. I also take Losartin, digoxin, and Coumadin. email@example.com
Jon's August 20 reply to Eris' August 20, 1999 - Hi Eris, 25mg of spironolactone is the usual correct dose for a CHFer on another diuretic. At the 25mg daily dose, it has no discernible diuretic effect. It's benefit at that low dose comes from other actions it has besides being a diuretic. Jon.
Dee K's August 20 reply to Susie O's August 10, 1999 - Howdie Susie, I'm sorry I'm late getting back to you. I've been out and about for a change, feeling great and not slowing down to keep up with my friends here. The "normal" was never stated but I think it's in the 90s. They wouldn't put me on oxygen until my saturation was under 85. Mine is 84 while on it and 72 to 76 when I've been off 30 minutes or more. Then watch out, I can't keep my balance and I start losing things. I feel great while I'm on the oxygen, with lots more energy, my depression is lifted, my legs don't hurt and I breath normally. I'm saving my heart lots of hard work. It's at 30% now and I can't afford to let it wear itself out. Good luck and I'm glad it wasn't your heart too. God bless, Dee K. DK1992@aol.com
Mike Dillard, August 20, 1999 - Hi Jon, It seems to me you know as much as these doctors. My story is that in August of 1997, I went for a physical. Keep in mind that I am 51 years old now. I am very active in bicycling and backpacking. I never had symptoms of anything. During the exam, an EKG was abnormal. The doctor said to get an echo. It showed my EF to be 30 to 35%. A cath confirmed 30-35% and my arteries were very clear. I have continued to be active. I am taking Coreg and monopril. A stress echo shows that my EF improves under stress. It now has been 2 years since I was diagnosed with cardiomyopathy. My EF tests after diagnosis were 3 months: 42%, 6 months: 50%, 18 months: 55%, 24 months: 40%. My doctor retired between the 18 month and 24 month test, and I am now seeing a doctor just out of school. Note the large decrease in my EF. I still can ride a bicycle 50 to 100 miles with no problems. I am one of the stronger riders in my group of healthy friends. Tell me what you think. Thanks. Mike Dillard. firstname.lastname@example.org
Jon's Note: I plead stupidity. <g> What do I think about what?
Rita, August 20, 1999 - Hi, Can anyone recommend a heart failure specialist in Oklahoma City? Are any of you in Oklahoma City? email@example.com
Phyllis A, August 20, 1999 - Hi Jon, I have a question for you. What is an appropriate time between check-ups? In other words, for CHF patients, how often should they be seen by a cardiologist even when not having any problems? firstname.lastname@example.org
Jon's Note: 6 to 12 months, depending on the individual patient
Julie Kendall, August 20, 1999 - Help! A couple of months ago my cardiologist took me off all my medications and told me I was fine. My EF was 56% and my heart was normal size again. My primary care physician had me go for an echo a few weeks ago because my heart didn't sound right to her and I couldn't seem to get off Lasix without swelling up. The echo showed 45% EF and an enlarged heart. She sent me to a cardiologist who sent me straight to the hospital after clocking my heart beat at 180.
I had an ablation (RFA) a few days ago and feel really good but here is the problem: He put me on a low dose of Lasix - 20 mg twice a day - and I've gained 12 pounds in 3 days and I see no sign of it letting up. I keep my fluids under 2 quarts and all that stuff we all have to do. This has been my curse. Because I don't retain fluid in my ankles (every place but) I feel like I'm being punished. I have to gain over 30 pounds of fluid (sometimes more) before anyone will even validate something is wrong for me. My eyes, thighs, and belly swell up but not my ankles. My cardiologist said it isn't pulmonary edema. I say it is! I've been down this road so many times before. I spent 6 months going to doctors being told I was fine before somebody believed me. I don't want to gain 40 pounds of fluid again. Has anyone else been here and done that? Am I just some freak of nature? Is something else in my body besides my heart going hay-wire? I could really use some advice. I don't see my cardiologist for another 1 1/2 weeks and I don't want to swell up and explode before then. Thanks for any comments. email@example.com
Jon's August 20 reply to Julie Kendall's August 20, 1999 - Hi Julie, Yes, you are a freak of nature and I must ask you to leave before you explode all over my web site - I just don't have the energy to clean up such a mess!
Just kidding. ;-) I have the same problem. My face, stomach and arms swell but my ankles do not. The scale does not lie and if a CHF specialist does not take a 3 day weight gain of 12 pounds seriously, you should seriously consider getting another doc, pronto. In the meantime, you might want to see an ER doc in the hopes of getting an IV dose of Lasix or Bumex immediately along with a bigger scrip for oral Lasix. The problem seems to be that your heart is not up to a regular work load even though it does well when that work load is reduced by proper meds. You may need to be on an ACE inhibitor permanently to restore and maintain your EF, and keep the swelling away. My own CHF doc says that he keeps all CHF patients on an ACE inhibitor, regardless of "cure" or not. The cardiologists at The Cleveland Clinic agree with him, since I have seen the question asked and answered at their message board. Holler until somebody listens and remember when it become embarassing to keep yelling, that this is your life - it's worth embarassing yourself over! Jon.
Linda O's August 20 reply to Catrolyn H's August 9, 1999 - Hi Carolyn, I was told by my family practioner to add 8 ounces of cranberry juice for urinary tract infections. I try to drink 6-8 glasses of water each day. I think Jon might be right about the Lasix and water combo. I am going to ask my cardiologist what she thinks. Hang in there! Linda O. firstname.lastname@example.org
Al L, August 20, 1999 - Hi, I haven't been on this site for several month, but thought that my condition would be interesting. In June of 1998 I was Class 4 as determined by Balboa Navel Hospital in San Diego by catheterization with an EF of 10%. I had all the typical symtoms associated with very low EF. Around Christmas I began to improve and and EF by echo in March was "less than 20." My medication has remained the same except my Lasix has been reduced from 40mg to 20mg. I also take 40mg lisinopril, 0.25mg digoxin, 325mg aspirin and 25mg metoprolol. Several months ago I started 100mg CoQ10 twice a day. It has been unbelieveable: no pain, no nap and I sleep flat with one pillow.
We sailed the Pacific for 5 years but sold "Moonshadow" due to my condition but now wish we had her back. I am looking at a Petersen 44 in Capetown. The wife thinks I'm nuts. I am 64, I rollerblade with my grandson and would like to have an ultralight. I don't mean to say the CoQ10 was responsible for my condition but I think it has been helpful. God bless you all. Al L, Minnesosta. email@example.com
Harriet's August 20 reply to Jon's August 10, 1999 - Hi Jon and all, I am diabetic along with CHF among other various ailments. My diabetic nurse and pcdoc advise me to drink plenty of water every day to flush my system. I take 80mg Lasix as well. A lot of my time is spent in the bathroom but I can really tell when my fluid intake is not adequate. Who knows? We just pray that all our doctors consider all the terrain before advising. My psychiatrist seem to consider all comeuppances before he prescribes. I am grateful for that. I read with interest your posts and everyone else's, too. I thank God that I have some real people that I can see myself in. With all that's going on with each of us, ain't it great to have each other? Luv to you all. firstname.lastname@example.org
Eli A, August 20, 1999 - Hi Jon and all, I visit your site every few days and it's very helpful. I have DCM with an EF of 29, an AICD (have had 10 shocks) ann now have a new ICD with a pacemaker. I am happy to see you back. My ICD has dramatically improved my life. It is a Ventak. My EF has gone from 20 to 29 since getting it. I have 3 children ages 25, 20 and 10. What checkups are available today to see if they might develop DCM? Is there any DNA test for this? I have been ill since 1993 and against all the doctors' predictions, I am still alive and don't have any plans to stop enjoying every moment. If anybody in Israel needs help with Disability in Israel, I am more than happy to help. Keep well and I am looking to hear from anyone. Best regards, Eli. email@example.com
Pauline N, August 21, 1999 - Hi, Does anyone know anything about the CRP blood tests? Apparently it is a marker for inflammation. Normal is 20. In the first test, mine was 40 and in the second it was 80. I think they treat it with steroids but I am trying to find out more info. Chloe276@aol.com
Marty, August 21, 1999 - Hi Jon, I hope you are recovering from what sounds like a real trying time. I am writing to see if anyone with CHF has been, or are doing, cardiac rehab? I am scheduled to start an 18 week session and I wondered what to expect. Marty, DCM, CHF, A-Fib, EF 30-40%. MartinBK@aol.com
Shirley G, August 21, 1999 - Hi, I've just joined the list, have been reading the postings, and want to introduce myself. I am 53, married for 35 years to a terrific guy, have 4 grown children, and was diagnosed with dilated cardiomyopathy 2 years ago. The diagnosis was made following testing during hospitalization for the second of 2 TIAs I had in November of 1997. I am not overweight, have normal cholesterol levels, no hypertension, no arterial blockage and am an active person. Initially I was treated with Coumadin and Coreg and given no limitations on activity or diet. I felt fine but last summer while training to do a century ride for the Leukemia Society (a 100 mile bike trip in 1 day, I love to bike), I found myself unable to get beyond the 45-50 mile range without experiencing nausea, shortness of breath and chest pain. So the doctors did some more testing.
The cardiologists believe the damage to my heart was caused by the chemotherapy drug Adriamycin, which I received in 1992 during treatment for AML (acute myelogenous luekemia). The drug is known to be cardiotoxic but since it helped put my leukemia into remission, I'm not complaining. My EF was 45% last year, 35% in May of this year, and down a little to 33% as of last week's checkup. I am now taking Coumadin, Coreg, Cozaar, and CoQ10. I have no edema in my legs or feet, though occasionaly I do swell in my abdomen. I get lightheaded when I stand up from a sitting position and sometimes become short of breath for no particular reason. I have some days when I am inexplicably exhausted; Very frustrating! Other times I feel just great. I can still do my daily 4-mile walk. I still bike, although much shorter distances. I hike, without a pack now, and don't do as well on the inclines as I used to. My doctor's advice when I questioned him about prognosis, was to enjoy myself now and not wait for later, and that the decline in heart function may be swift or slow. Because a relapse of leukemia will always hang over my head, I already live my life enjoying each day.
I joined this list because I am hoping that others on this list can tell me what to expect from CHF. What can I expect as this disease progresses? How debilitated will I become? Are there any distinct signs that the disease is progressing? I appreciate any information and advice offered. Thank you! firstname.lastname@example.org
Leland Y, August 21, 1999 - Hi Jon, I got myself a new MD also. My last cardiologist was so-so but not so good relating with people. When I got my second MUGA on July 14 there was not so much a word as to when I should see him again, except maybe around October. I felt that since I had improved so much, that an evaluation of my meds was in order; not to mention that he or his nurse should have called to let me know of the good results. I had to have a friend who worked at Kaiser get the result for me. I guess there's always good and bad, even to good/bad news. The new cardiologist did not realize that my case was so complicated, so he came right forward and said I needed a 45 minute meeting on September 2. He indicated that the first thing to be done was an EKG, then evaluate my meds one at a time, whether to go up or down. I felt a whole lot better after seeing this new cardiologist. Perhaps you will fare as well as I did after you see your new provider. Good luck. LLYEE@surfside.net
Jon, August 21, 1999 - Hi everyone, I just want to thank everyone who wrote to wish me well. Every single message was deeply appreciated. :-) I am not able to answer or post them all but wanted to say thanks!
On another note: Now that the Who's Who section of my site can be searched separately, it is a lot easier to find another person with your identical health problems. For instance, you can search for "chemo" or "chemo-induced" or "cancer" or "dystrophy" or "PPM" or "peripartum" or "asthma" and so on (without the quotes). So please consider sending me a bio if you haven't already and include a brief medical history in it. It would make a very nice resource if there got to be several hundred on the site (there are about a hundred now). I know it takes me awhile to get to them and put them on the site, but then again, I can't get to them if I don't have them. <g>
Finally, I now have the space to add some more low sodium recipes! So if you have a favorite, please send it to me and I'll add it to Kitchen Corner page. Jon.
Robert W, August 21, 1999 - Hi, I would like to know if anyone here knows what the statistics are for living into your 80s if you were diagnosed with CHF at age 51, believed due to a viral infection and not to coronary disease. I have lost 40lbs and now weigh 230lbs with a height of 6' 3". email@example.com
Mina Meyer, August 21, 1999 - Hi everyone and especially Jon, Thanks for this site. Just to bring you up to date on me, I finally got into UCLA Cardiomyopathy Clinic and am seeing the head doc there, thanks to El who use to see him and moved to Las Vegas. It turned out that my internal medicine doc at Kaiser went to school with him and was able to give me a referral. He added Atenolol, Aldactone and Zocor to my Lisinopril/zestril, digoxin, and Lasix. I also take insulin, Polaramine, Premarin and Provera, and Tegretol for my peripheral neuropathy in my feet, and was able to drop all diabetic pills. I've only been on the 3 new drugs for about 2 weeks. I have been very tired since taking them. I'm needing about 3 extra hours of sleep in the afternoon. Today for the first time I am less tired and haven't taken a nap, so I'm hoping it was just getting use to the new drugs. My potassium levels are higher than they should be (5.2) so I have to not eat things high in potassium like peaches, apricots, avacados, bananas and cantaloupe. I am not eating more than 1000mg of sodium per day. I kept my fluid intake too low, so now I am drinking more, eight glasses a day. The exercising has been difficult while I have been feeling tired but most days I have either walked or done water aerobics. My UCLA doc feels I can be well medically managed. I had a MUGA scan last month and it showed a 22% EF, about the same as last February.
Yesterday at Kaiser my blood pressure was 50 over 35. I know I'm taking a lot of different drugs which lower the blood pressure but this I've never heard of. I asked my doc and he just said not to worry, it's easier on your heart. Maybe the tiredness I've felt is from having low blood pressure? I also saw a pulmonologist recently. When I took a pulmonary function test it showed my breathing improved by 59% with meds. I do take Azmacort twice a day for asthma but I don't want to take other asthma medicine because it hurts the heart. I don't wheeze anymore at all. I know this has been too long. Please forgive. Thank you again. MinaKay@aol.com
Vicki M, August 21, 1999 - Hi, I was diagnosed with CHF in October of 1998 resulting from chemotherapy treatment for my cancer. There is not too much written that I could find, about a prognosis with chemo-induced CHF. I really would like to hear from someone with a similar condition. I am currently taking Prinivil, Lanoxin, Coreg, Lasix, potassium, vitamins B1, E, antioxidants and CoQ10. My ejection fraction has improved but my heart continues to enlarge. I will be having another echo in a couple of months. I hope to hear from someone out there! Thanks, Vicki. firstname.lastname@example.org
Jon, August 22, 1999 - Hi everybody, I'm still way behind but I am slowly catching up on posts. Please take a look at www.chfpatients.com/search_tip.htm first chance you get. I finally got that project done and it has made a world of difference in the ease of finding information on this big old site. I may have broken a lot of links to my pages but I left automatic re-direct pages up for each one, so no one should get lost. <g> Thanks. Jon.
John Len's August 22 reply to Tom S' August 19, 1999 - Hi Tom S and Jon, Diabetes also runs in the family in many cases. I have also read that diabetes was way down in Scandinavia during WW2 but since then, with the increase in dairy products, type 1 diabetes is up in all age groups. How about it, Luc? John. email@example.com
Mina Meyer, August 22, 1999 - Hi Jon, In my very long post, I managed to forget to say I am 59 years old and was diagnosed with CHF 7 years ago. MinaKay@aol.com
Joe S' August 22 reply to Bev T's August 19, 1999 - Hi Bev, You talked me into it. Actually the decision was made about 2 weeks ago. My wife and I are moving to a little valley about 55 miles southeast of Lake Tahoe. Like you, as soon as I came back to the humidity, my breathing worsened many-fold. My business can go anywhere since I do it all on the phone, Internet and fax.
I have another question for anyone. Like many of you, I have food allergies. My worst one is to onion and when I mistakenly eat them, I bloat up horribly and at the same time it feels as if I'm having a heart attack. I used to think this was simply stomach gas but now am beginning to wonder if it really does affect my heart. Does anyone out there have any opinions? We're praying for you long and hard, Jon. Joe S. JES@StevensonLighting.com
Jon's Note: Got an extra room for me in that little valley? ;-)
Greg B, August 22, 1999 - Hello all, I am trying to locate a good computer program that will help me control and manage my daily diabetic meals. I am having problems learning the food exchange system. I have recently been having up and down blood glucose levels and although I am on insulin, I know that my diet is an important factor. Does anyone have such a program or know where I might be able to obtain one? God bless all of you. firstname.lastname@example.org
Jan C, August 22, 1999 - Hi, My question is a simple one, I hope. Is there a right or wrong way to apply for SSD? It seems to me that some people get it with no problems and some have to just keep doing it over and over. My doctor finally approved me for Disability from work. He wanted me to have light-duty (which is a joke) and limited days of work. I just could not believe him. I was extremely tired and it's a lot worse after I take my meds. I am usually wiped out most of the day. I also have blackouts. My EF is now 35 to 40%, down from 52% a year ago. I have a complete LBBB, SOB and I developed a cough in June that won't go away. I just learned Tuesday that I have bronchitis, which will take several weeks of treatment. JanCur@Bellsouth.net
Jon's August 22 reply to Jan C's August 22, 1999 - Hi Jan, Be sure to give the Disability page a good read. It might help. I really want to warn you you to watch out for that bronchitis. A lot of us have been misdiagnosed with bronchitis and given treatments that made us worse because what was really causing our lung congestion, shortness of breath, cough and fatigue was undiagnosed CHF. Keep that doc on his toes. :-) Jon.
Helen O, August 22, 1999 - Hi all, Well it has been an interesting 1 1/2 weeks. On 8/11 I had my first cardiac rehab session. It went well. I then went to ASu to get my books for the fall semester, then had my brother-in-law pick me up so I could visit with him and my sister and my dog, Jojo. I went to the store with them, and that evening my boyfriend picked me up at their house. About 10:30 PM that night, I got up to take my night meds and had a major problem. I got into the kitchen and started feeling dizzy. Then everything started to fade away like I was going to black out. I had numbness and a tingling sensation in my fingers and was really out of sorts; kind of of like the after-chemo feeling of my feet being super-glued to the floor, my arms and legs were heavy and my head was floating in the clouds but was too heavy to be held up by my neck. It took an hour and a half but it all passed.
On 8/12, I woke up feeling a little tired but nothing more so I decided to go to rehab. They had me doing less exercise and lower speeds but I had another attack, same as the night before. My moniter said my heart was fine, my BP was good and so was my pulse. I was taken to the ER and after being there several hours, all tests saying my heart was fine, I was told see my doc ASAP and was sent home. Well, I saw my doc on 8/18, the earliest he could see me, and I was told that even though I am awfully young for it, I am presenting all the symptoms of cardiovascular diease. So on Monday, 8/23, they have scheduled me for a cardiac cath. So I get to miss the first day of school and maybe the second. On a positive note, I found out my cardiologist is one of the highest recommended in the state. Take care, all. Helen O, age 25, EF 24%. email@example.com
Ben B's August 22 reply to Pat C's August 19, 1999 - Hi Pat, First of all, I'm not a doctor but from what I know, the normal cause for abnormal t-waves is ischemia, which basically means some possible clogging in the arteries. The normal t-wave (which is the long part between blips) is positive, but inverted t-waves can indicate ischemia. Of course, there are other causes for this, including branch bundle block, but this is the usual one. They probably want to check this with some other test. By the way, I was always told that I had to have a doctor present to do a stress test. firstname.lastname@example.org
Judy M, August 22, 1999 - Hi Jon and everyone, I haven't posted in awhile but keep watch on what everyone's saying. I have been playing around on the computer to get some of my thoughts off myself and my illness. I've found an Internet site that pays you to surf the Web, which we're all doing a lot. It's called AllAdvantage. Granted you don't get a lot, but it's kind of fun. You can check the site and maybe say I referred you. E-mail me for more info. I've also found some other sites where you can get free gift certificates. You can e-mail me about those too. I guess I just started doing this because, as I wrote awhile ago, since getting CHF it seems like all my friends disappeared. It's made me very depressed but it's getting better or bearable anyhow. So, this is just for fun. Stay well. email@example.com
Joe S' August 22 reply to Bev T's August 22, 1999 - Hi Bev, I'm moving to that little valley just south of Lake Tahoe in 3 weeks. Just kidding, sort of. We've been trying to get everything settled for some time and just a few minutes ago the Realtor said the landlord would accept my hyper German Shedder - no, not a misprint - they aren't shepherds, they're shedders. I'll let everyone know how the high dry climate works.
I also have a question for anyone. I, like many of you, also have food allergies. My worst food allergy is onions and for years when I ate them, I felt like I was having a heart attack because of so much bloating and stomach gas. Now I'm beginning to wonder if they really aren't affecting my heart? I got some the other day by mistake and it felt just like I'd eaten too much sodium! Jon, I'm sure glad you're better. I like your sense of humor. JES@StevensonLighting.com
Jon's Note: Does that mean you have a room for me (and 2 cute little doggies)?! <G>
Janice F, August 22, 1999 - Hello everyone! Jon, I hope Linz is better and that your "dawg" is better too. I also hope you are feeling good and your computer setup is working better for you. I can't tell you how much this site is appreciated.
I was wondering if anyone had a similar experience to mine. I will make it short and skip the details. My doctor had me on a high blood pressure pill - 25mg of Atenolol. During my last physical, it was discovered that they had lowered my heart rate to a dangerous low. My heartbeat was 60 before they put me on this pill and it was now 40. I had to get off the pill ASAP. During the time I was being weaned from it, I suffered terrible chest pain and palpitations, not to mention pain crawling up my left arm and into my chest. Overall, I felt terrible. During the weaning time frame, I went to my doctor's office and they were alarmed to see my heart rate still very low, almost to 30. I had to have a heart monitor put on me for 24 hours. I do not know the results of the heart monitor yet. Of course, while I had the heart monitor on, I did not suffer any pains. My doctor checked me this past Wednesday and told me my blood pressure was 148 over 82 but that she was going to leave me alone and not put me on any more pills and that she wanted to see the results of the heart monitor. I do not expect that she will find anything on the heart monitor to cause alarm. It also seems that since they have taken me off this pill my heart is beating one time at 62 and another time at 70.
They had me going through all this craziness for about 5 months and now they say I may not need pills. Does any of this make sense? They scared the heck out of me. Also, as I was leaving, another woman patient told me she was on 50mg of Atenolol and just suffered a heart attack. Two Deacons that I assist at church have had similar trouble with blood pressure pills they have been put on. One is now not living. The other had a heart attack last week but I do not know the pills they were put on. I see from the info given here that some people cannot take beta-blockers. That may be my problem. Is anyone out there taking Atenolol? I see it is a new drug. My heart goes out to you all with all the things you are suffering. firstname.lastname@example.org
Jon's August 22 reply to Janice F's August 22, 1999 - Hi Janice, Atenolol (brand name Tenormin) has been around a long time. I don't know how your doctor took you off it, but it should be done slowly and carefully! See www.rxlist.com/cgi/generic/atenolol_wcp.htm. To quote:
"In patients who have congestive heart failure controlled by digitalis and/or diuretics, Tenormin should be administered cautiously. Both digitalis and atenolol slow AV conduction."
"Cessation of Therapy with Tenormin: Patients with coronary artery disease, who are being treated with Tenormin, should be advised against abrupt discontinuation of therapy. Severe exacerbation of angina and the occurrence of heart attack and ventricular arrhythmias have been reported in angina patients following the abrupt discontinuation of therapy with beta-blockers. As with other beta-blockers, when discontinuation of Tenormin is planned, the patient should be carefully observed and advised to limit physical activity to a minimum. If the angina worsens it is recommended that Tenormin be promptly reinstituted, at least temporarily."
In other words, if your doctor stopped your atenolol suddenly, you might want to consider a change of doctors. Jon.
Pat D, August 22, 1999 - Hi Jon and everyone, I had a scary experience Saturday and it's the second time it's happened, so I want to ask about it. I went outside at midday to water my flower beds. It was the hottest day of the year here in Houston so don't ask me where my mind was. I plead temporary insanity. After about 45 minutes, I started feeling extremely weak so I turned off the water and went inside. I barely made it to a chair because everything started going black and I could barely stand. My pulse was hard to find and I took my blood pressure and it was low (80/42). I took it several times over the next 2 hours and it dipped as low as 78/36. It's still not back to normal, some 10 hours later. I felt really terrible, so weak I could barely move, and wondered if I should call 911 since I was home alone. I'm on 25mg Coreg twice a day as of 3 weeks ago and have had no trouble with it at all but the first time this happened to me, I wasn't on Coreg. I just got too hot outside. I've been researching low blood pressure on the Web and there's not a cutoff for what's too low but I gather 78/36 is getting in the danger zone.
I guess this sounds like a dumb question, but should I call for help the next time it happens? I don't want to end up in shock. Thanks to anyone who wants to share with me. Pat. Patj98@yahoo.com
Jon's Note: If there's any doubt in your mind about your ability to stay conscious, I'd make that call.
Bill ?, August 22, 1999 - Hello, Well 15 days ago I felt like a watermelon was inserted into my stomach. I had a hard time getting a breath. For the next 10 days I couldn't sleep, couldn't lay down without feeling like I was going to suffocate for lack of air. I went to the doctor and he listened to my lungs and heart, and decided I had asthma. He gave me an inhaler and sent me packing. Well, 2 days go by and my stomach now looks like a Volkswagon had made it its home, I still had no sleep, but I could take naps during the day for about 2 hours. Finally we decided to go to an emergency room after 12 days of no sleep and the doctor checks me over, takes a chest x-ray, blood gas tests, and listens to my chest and heart. He comes back and tells me I have a sleep disorder and that I need to contact a sleep clinic. Hmmm, ok I said, and went home and sat up all night because of course I couldn't sleep. That morning while in the shower, my girlfriend tells me the hospital called. A radiologist looked at my x-rays again and I have an enlarged heart and CHF. It seems they mistook what they saw as technique rather than CHF. Well, I went back to my doctor and got Lasix and a referral to a cardiologist.
I take two 20mg Lasix in the morning and one 20mg in the evening. Last night I slept for 7 hours. What a relief to sleep! I am always tired though, and if I walk through a grocery store, I'm short of breath. They did an EKG and said I had a bundle branch block. I'll see the cardiologist this Wednesday. I had been blaming my fatigue on the heat and the mugginess. I've always been active and yet the last year, I seemed to have lost all my energy, little by little. Thank you for this site. Just knowing I'm not alone is a comfort. Funny, I quit smoking 22 days ago and was blaming that for my insomnia! <lol> I'm 49 yrs old and I've not not had any other tests yet, but will give data as I receive it. Bill. email@example.com
Sara, August 22, 1999 - Hi Jon,I sure am glad to see you posting, as that tells me you are feeling better! Well, I have always made an issue of the importance of changing docs when not satisfied or at least getting him to listen so I can understand my medical problem. Well, guess what? I left my doctor's office Friday a little unsatisfied. This visit seemed to be a little rushed, even though an EKG was done and vitals taken by nurse and doc. I haven't had any lab work done since May, yet my doctors in Florida said I should have it done every month. I was feeling better from February to June and at that time I was taken off Lasix, Zestril, Zocor, and was only continued on aspirin and amiodarone (Cordarone). I told the doctor about having a problem of losing my balance with weakness on my left side (once) and getting more SOB than I had been, with deposits on my cornea from the amiodarone, so he cut back on the amiodarone and added Zocor and a blood pressure pill/diuretic. I think it is hydrochlorathiazide. I get an echo in 2 weeks. Well, sorry to be so long. I know I am lucky that my cardiomyopathy and heart failure are nowhere near as bad as you and others, but I just needed to vent. Keep improving and the best to all. Sara.
PS. For my weakness, I was told to see my primary doctor. firstname.lastname@example.org
Pat L's August 23 reply to Mina's August 21, 1999 - Hi Mina, Last year there were times when my blood pressure got down to 70/34. During this time I could barely make it up a flight of stairs and would hear a "roaring" sound in my ears when I did try the stairs. Gradually I seem to have adjusted to all the meds that lowered my BP. My BP was low to begin with; usually 100/60 pre-CHF, so it was bound to drop really low with the meds. Now I am on lots less medication and feeling much less tired. Pat. email@example.com
Jack's August 23 reply to Pauline N's August 21, 1999 - Hi Pauline, I've never heard it called CRP. It's usually called sed-rate, which is a full body measurement of inflammation. It's a test usually done by rheumatologists. I've had it done twice but was below normal both times. They treat it with lots of different things beside steroids. They can treat it with any of the myriad NSAIDS (non-steroidal anti-inflammatory drugs). It's basically a treatment for pain. Make sure your doc knows that you also have heart problems because all of those drugs cause complications when there are heart problems present, especially steroids. firstname.lastname@example.org
Hope M's August 23 reply to Margaret's August 20, 1999 - Hi Margaret, I have CHF from DCM with an EF of 26%, stemming from mitral valve disease. My valve was replaced in 1994. Last May I broke my ankle and had to have surgery to realign the bones, and a plate put in with 5 screws. I was very concerned about having surgery while having CHF. I made sure the anesthesiologist was fully aware of my heart condition and he spent 45 minutes talking with me about it the night before surgery. Everything went very well.
I belong to an organization called Mended Hearts and each month we have a speaker or group discussion. Last month our speaker was an anesthesiologist. You can bet that all the people in Mended Hearts are very concerned whenever they have to have any kind of surgery! He told us that with heart patient he almost always keeps a transesophageal echocardiogram probe down the patient's throat so he can very closely monitor their heart, and that they have about 200 medications at their disposal which can be administered immediately through the IV to control or assist all aspects of the patient's well-being during surgery. I feel much more confident now, should another occasion arise in which I would need surgery.
I don't know if you have a Medic Alert bracelet but I think it is a good idea for every CHF patient to have one. You never know when you might be in an emergency and it would alert your doctor and anesthesiologist to give you specialized heart attention. Hope. email@example.com
Paul M, August 23, 1999 - Hi, In one of Jon's mailings near the end of June or in early July, he had an article referencing a presentation by Dr. Lester Packer to the American Diabetes Assocation on the effects of alpha-lipoic acid. I was impressed by this article and I went searching for other information. Alpha-lipoic acid reverses nerve damage done by diabetes. Nerve damage has also been linked to causing heart problems, plus others. The specific heart problem was not mentioned.
With all that said, here is my experience to date: I've been taking alpha-lipoic acid for about 6 weeks now. I have had some very favorable improvements to my health. Diabetic neuropathy in my legs has been reduced. My toes that were previously black in color due to circulation problems are now pink in color. My wife said that she noticed my feet were warm, something that has not been noticed for quite some time. I have seen an reduction in insulin consumption of 15%. I did consult with my doc when starting this treatment and he had no information on it and has never heard of it. He gave me the usual standard warning about mixing over-the-counter remedies with prescription drugs, concerning interactions. He did not say either a definite yes or no about continuing it. I'm currently taking 350mg per day and will increase it to 400mg per day tomorrow. I'm really curious what the long-term benefits will be. If some of you with diabetes are interested in trying this, it is not cheap when purchased in local nutrition centers. If you want a good price for it, check out http://www.glucosaminedirect.com/glucosamine/allipac.html. firstname.lastname@example.org
Lori P, August 23, 1999 - Hi, Is it possible to be in remission from CHF, then relapse? Thanks. email@example.com
Jon's August 23 reply to Lori P's August 23, 1999 - Hi Lori, Yes. It's usually called "going into" heart failure, from some cause. A person can go into and out of heart failure a lot (making them a CHFer), depending on the cause and their lifestyle and drug-taking compliance, among other possible factors. Jon.
Ginger's August 23 reply to Shirley's August 21, 1999 - Hiya Shirley, Welcome to Jon's Place. You have come to the right place. I know there are a few people here that have this due to chemo. I am also sure you will hear from them. Read The Manual here, it tells a lot. We also have Chats. If you have ICQ, let us know your number because some of us talk on it off and on all the time. My sister is going through chemo right now and I think I am gonna ask what kind. I am curious now. I wouldn't want to see her have what we have on top of her other problems. We have a page for people with multiple conditions for anyone who wants to see who else has the same conditions we do. It's listed on the Links page. Just a thought, but those people who are on that page or want to be on it, if you have this because of chemo, we can also add that to it. As Jon has said, check and search Who's Who. See you all at chat. School starts in a week here so I will have more time for chats. :-) Stay well, ya'll. Hugs, Ginger. firstname.lastname@example.org
Donna ?, August 23, 1999 - Hi, I just found this board. Briefly, here's my story: Two years ago I went in for a bad cough. After a chest x-ray, my new doctor said I had congestive heart failure and fluid on my lungs. He gave me diuretic. After many tests, other doctors could find nothing so they took me off the medicine. I continued to have fatigue and shortness of breath on exertion. Last week (Tuesday, August 17) after almost a month of chest pain and tingling down my left arm and pain in my jaw, I went into an ER. The ER doctor said I had an abnormal EKG and was "trying" to have a heart attack. They admitted me, gave me IV nitro, several blood-thinner shots, and morphine for increased pain. The second day they did an angiogram, said my heart was good with no blockage and sent me home. They told me to take an aspirin a day and also Zantac (since I'm allergic to aspirin.) It's a week later and the pain is still continuing, with an especially horrible tingling from my shoulder down to my fingers and pain in my jaw. I feel very frustrated. My next appointment with the cardiologist who did my angiogram isn't for 2 weeks. Any suggestions, anyone? email@example.com
Jon's August 23 reply to Donna ?'s August 23, 1999 - Hi Donna, Off the cuff, my first advice is to see a cardiologist immediately, even if it means getting vocal. This kind of sensation is nothing I would be passive about. Jon.
Jon, August 25, 1999 - Formmailer had a bad spell yesterday so no posts came through for a few hours then. It should be working now. Jon.
Debbie H, August 25, 1999 - Hi all, Let me introduce myself. I'm a 47 year old female. Please forgive me for the length of my story. I was diagnosed with CHF and cardiomyopathy in December, 1989. The following doctors (I moved around a lot) didn't believe that I had heart problms, so they did nothing to help prevent things. They had me convinced that it was just the asthma and chronic pulmonary disease (COPD) and that the chest pain I was feeling was nothing more than bronchospasms from lung problems. I'm also contending with fibromylagia, sleep apnea, and frequent migraines.
I spent 9 days in the hospital in July. I had been so short of breath that every single time I moved, I would start coughing, then I'd gag, then I'd throw up. I did this from May to when they finally admitted me to the hospital in July. After a sonogram on my heart, my new heart doctor came in and very abruptly told me that my heart was in worse shape than anyone had imagined! I had 88% irreversible damage with an EF of 12%. He also informed me that all the years being off the heart meds is one of the biggest reasons for so much damage being done.
I'm really new at this, so I've been reading everyone's posts. I'm really glad there is a group like y'all who are willing to share their feelings, knowledge, and support! I hope that you don't mind that I join your group! I do have one question. I understand that fatigue is one of the factors of this disease, however, is there anything I can do to get sopme sort of energy, or at least to be able to keep from sleeping almost all day and night long? Being so exhausted and sleepy is one of the most frustrating symptoms of this disease! Thanks for being here. Debbie H. firstname.lastname@example.org
Bob H, August 25, 1999 - Hi, I hope you are all doing fairly well. I just wanted to let all my friends and soon to be friends know that the reason I have been off the computer for over 3 weeks is that my monitor was broken. Also on the 17,18 and 19 of August, last week I had a cardiac-catheterization and balloon angioplasty with stent emplaced in my Circumflex Artery, which had been 90% blocked, causing constant angina. Thanks to the good Lord I am feeling much, much better and I don't get SOB as fast anymore. It really has made a difference. If anybody has any questions, feel free to contact me at anytime. Jon, thanks again for this fantastic site. I have provided the URL to an awful lot of nurses who also think it's fantastic. I hope your families health continues to improve. Take care and Godbless y'all. Peace. Bob H. email@example.com
Helen O, August 25, 1999 - Hi all, Well, the cath went well. My doc said that my arteries are clean and smooth. He measured the pressure is my left and right sides and did a new EF for both sides but I do not know the new numbers yet. I was kind of out of it when we finished. My boyfriend and I have a feeling that since the cath could show no reason why I have these episodes that the docs will just stand around, scratch thier heads, and say something about this just being typical chest pain. This annoys me, because to me there is nothing typical about chest pain. My next appointment with my doc is September 3. Hopefully I will get an acceptable answer then. Helen O. firstname.lastname@example.org
Marty K, August 25, 1999 - Howdy, It has taken 2 years but my worker's comp case has finally been docketed. I was a police officer until getting DCM and a-fib in 1997. My state law says heart disease is presumed to be job related for police officers. I was somewhat naive and thought the insurance company would kick-in and help me with the bills. Was I ever wrong?! They denied mine in a week and this ended up totally screwing up my Disability retirement. I had to retire on non-work related disability at a much lower payment. I found out that the worker's comp carrier almost always fights "presumption" cases, hoping the officer dies and the case goes away, especially with CHFers who unfortunately tend to die faster than MI people.
I'm writing to see if anyone has any information that relates stress, lowered immune response to DCM, a-fib and CHF. I need all the facts I can to have a slight chance against the hired gun doctors of the insurance company. These well-paid experts will undermine me at every turn. I am sure I got my DCM through a virus though, of course, the etiology is Idiopathic. In my old job, the most likely place I'd contact a virus was at work, out on the streets. Thanks for reading and God bless all who struggle daily. Marty K, DCM, CHF, A-fib, EF 30-40%. MartinBK@aol.com
Jon's August 25 reply to Marty K's August 25, 1999 - Hi Marty, Be sure to thoroughly search databases such as Medline using keywords like "stress, heart failure" and so on. Go to www.ncbi.nlm.nih.gov/entrez/query.fcgi for a first crack at it. Let me know if you need more resources. Jon.
Rod Butler, August 25, 1999 - Hi. Has anyone had an ablation followed by CHF little more than a year later? The ablation (electrode zapping of the AV node) was wonderful in eradicating my a-fib but I could have done without the CHF. Am I being overly suspicious that one may have caused the other? I would like to hear from those who have had successful ablations with no such effect and also if there is anyone who had my experience. If, with me, it was merely coincidence, then answers could put my mind at rest. I have no desire to put fear into anyone who is considering an ablation. For me it did the job for which it was intended. I just want to know if there could be a connection. Rod. email@example.com
Donna A, August 25, 1999 - Hello Jon and all, I hope everyone is feeling well today. I guess I get the pleasure of joining this fine list. I was 49 when diagnosed with CHF viral cardiomyopathy, arrythmia, an AICD, and a 26% EF, whatever that is. I had to look mine up in some records I had. It seems like there are quite a lot of people in there late 40s and early 50s with this. Am I understanding this right that once you have had CHF you are a prime candidate to get it again? Also I have been told by a few people that you can work while being on SSD. Something about earning up to $700 a month. Is there any truth to this? This is a fantastic Website. I wished I knew about it a year and a half ago. It sure would of helped me get SSD started and realizing I'm not the only one who feels the way I do and did. Do you think there might be a way of getting this info into our hospitals so they can get a early jump on some of the info they might need? Most important of all is that they know there's other people out there they can relate to and talk to when needed. Thanks for being there for all of us. firstname.lastname@example.org
Don G, August 25, 1999 - Hi Jon, I've been gone for a few months, working mostly on the editing of the No Salt Lowest Sodium Cookbook. The publisher has just given us a publication date. It will be available in most all bookstores and of course online at www.healthyheartmarket.com as well as www.amazon.com and other sites. It's to be 384 pages, hardbound about 6 x 9 inches in size. Over 350 great recipes are included along with a complete 28 day low sodium meal planner parsed by a nutritionist and registered dietician. The publisher has me scheduled for a few national TV shows so it will give us an opportunity to open up CHF to the rest of the world on shows like Good Morning America and so forth. Visitors can still drop by www.megaheart.com and pick up sample recipes and leave their e-mail for notification for the day the book is due. Anyone can reserve or pre-order a copy at bookstores using the ISBN number and title. The ISBN is: 0-312-25252-8 and the title is "No Salt, Lowest Sodium Cook Book." It's from St. Martin's Press, Thomas Dunne Books. I must thank everyone at Jon's Place who wrote to help push the publisher along. It worked. Thank you. Donald Gazzaniga. email@example.com
Joy R's August 25 reply to Dee K's August 20, 1999 - Hi, Talking about oxygen saturation levels normal is usually in the upper nineties. If your O2 sats get in the 80s, you are usually having respiratory diffficulty, even a sat of 88 is poor. I have never heard of not being on O2 unless the sat drops below 85, a dangerous level. So Dee, if your sats are in the 70s and you are conscious and breathing, and also aware of what going on, you must be talking about a different level than an O2 saturation. I have a diffusion level of 77% but the lowest my O2 sats have gotten was 88 and I was in pretty bad shape. I have heard of some with COPD who can have rather low levels; Is this the case with you? firstname.lastname@example.org
Sherrell G, August 25, 1999 - Hi, I am having problems with my extremities going to sleep more frequently and quickly. I was sitting with my left leg crossed over my right at the knee and when I stood up my whole left leg was numb. It would not hold my weight, so I fell down spraining my ankle pretty badly. I wake up several times at night with my arms asleep because of keeping them bent. Talking on the telephone has become an exercise just switching arms holding the receiver. Any suggestions or solutions to help keep this from happening short of never crossing my legs or bending my arms? email@example.com
Janice, August 25, 1999 - Hi, I am new here and forgive me if I should not post here, but I would just like you all to know that Jon's recipes are wonderful. I was being treated for high blood pressure for 5 months, with a history of heart murmur, chest pain and attacks since my childhood. My blood pressure was as high as 180/100 on March 15, 1999. It fluctuates greatly. The last reading on August 18, 1999, was just 148/82 and my doctor has taken me off high blood pressure pills so I am on my own and am trying to beat it by eating right. No more salt! After suffering almost 2 weeks of terrible pains up my left arm and into my chest because of being weaned from those pills, I do not want any more pills. I had to have a heart monitor on for 24 hours and the results came through as normal. My doctor says she feels I was suffering anxiety attacks. Well, when someone tells me my heart is almost stopping beating. yes I do get excited! It seems, I guess, that I do not react very well to their pills.
I am age 54 and am starting college at night next week, plus I work on assignment when I can. I am expecting my first grandchild in April. I would like to be around awhile. So Jon, thank you for your wonderful recipes. I pray I can control my blood pressure by eliminating salt. I reacted very badly to the 2 pills they put me on: Covera HA (that bound me up totally) so they put me on 25mg Atenolol. My heartbeat went to 40 beats and then lower. The normal beat is 60 to 100. At last reading, my heartbeat has gone back up to 60 and up. Has anyone else had these experiences? I see how so many of you are going through so much. I can only offer my love and my prayers.
PS. I made Jon's Chili Powder, Ketchup, Salad Dressing, BBQ Sauce and Chicken broth. They are all wonderful and no more Heinz ketchup for me. I hope things are going better for you all and especially for Jon and his family. firstname.lastname@example.org
John, August 25, 1999 - Hi, I am now in my sixth month of the Smith Kline Beecham experimental drug test for their new CHF med. They won't say what the drug is, only that it is expected to be approved for at least hypertension sometime this year. I am fully titrated on the medication and have entered the maintenance phase, which is expected to last 9 months. Titrating up, I had more energy and stamina than at anytime post-CHF diagnosis. Now, some of the energy seems to be dissipating and I am taking naps more often. They have moved me from a Class 3 to a Class 1 but I am not sure that is warranted based on how I feel. The meat, cheese and egg diet works miracles on my diabetes, when I don't go off of it but it has gotten harder to keep the carbohydrates down around 50. Unlike the other people on this diet, I have lost no meaningful amount of weight. That's all for now. email@example.com
Phyllis A's August 25 reply to Shirley G's August 20, 1999 - Hi Shirley, I have also had Ariamycin for treatment for breast cancer. I also have all the other symptoms you describe. E-mail me if you like so we can talk. Phyllis A. firstname.lastname@example.org
Ben B's August 25 reply to Jan C's August 22, 1999 - Hi, There is no sure-fire way, but I feel a lawyer is very helpful to many people in getting SSD. One thing that mine told me and that I have heard a couple of times here is that it helps to sit down and write down absolutely everything that is wrong with your health, whether you think it relates to your heart or not. This includes being depressed or nervous about your heart, every way your health and heart condition affects your daily life. Then, give the list to all your doctors for your files and include all this stuff in your application. email@example.com
John Len's August 25 reply to John's August 25, 1999 - Hi John, How does this meat, cheese, egg, diet affect your cholesterol levels, especially in a heart patient? John Len. firstname.lastname@example.org
Danny, August 25, 1999 - Hi everyone, I have been in contact with SS and they informed me a ruling has been made on my claim but it had to be sent to Texas for review. Have any of you had this happen? Thank you. Dan. DLS50@webtv.net
Jay Kelly, August 25, 1999 - Hi, I am a 39 year old active male diagnosed last year with CHF or cardiomyopathy. My heart has reduced to normal size and there have been no more occurrences of the a-fib which caused my heart to enlarge. Two cardiologists have claimed me to be the luckiest man in the world. However, after reading some of the posts, it is evident that everything can be going great and quickly your condition can change. What type of questions should I pose to my cardiologist at my next visit? email@example.com
Bill C's August 25 reply to Sherrell G's August 25, 1999 - Hi Sherrell, Extremities going numb and tingling is very common with me also. I've questioned my primary physican, cardiologist and also visted a neurologist, who wanted to do carpal tunnel surgery <lol> but no answer was ever given for this. My arms can become very painful with this at night or even after a short nap. If you find an answer, please share it. Good luck and God bless. Bill C. firstname.lastname@example.org
Linda's August 25 reply to Julie Kendall's August 20, 1999 - Hi Julie, I don't swell in the feet or ankles either. Mine is all in my belly or hands. I believe this is why I was misdiagnosed for so long before an alert ER doctor realized the fluid in my lungs wasn't pneumonia and my shortness of breath wasn't caused by allergies or asthma. My cardiologist has come to recognize this "abnormality" and now checks my hands for fluid retention. Just be sure to tell your doctors, rather forcefully, if necessary about this. Linda, EF 58% - quite an improvement from a year ago August! Contessa@prodigy.net
Candy P, August 25, 1999 - Hello, I haven't posted for a month or two as my daughter took her computer to Lansing, Michigan. I am visiting her for a couple of weeks before I have bypass surgery on September 13. Apparently I have an occluded artery. I have to have a bypass from my thoracic area to below my groin in both legs. The blockage is from the radiation and cobalt treatment I received many years ago. Of course, he said smoking for many years added to the problem. I was told that part of my water retention in my feet is because of no blood going through my arteries. He said the only reason my feet didn't fall off is because of the vessels. He put me on 1200mg of trental. This is a blood thinner. I'm not looking forward to surgery. The good news though, is that my cardiologist said my heart is improving and he took me off Lanoxin. My cardiovascular surgeon also decreased my accupril, as my blood pressure has been staying around a respectable 116/60. Sometimes it was lower, causing hypotension. GrPota@aol.com
Diane J, August 25, 1999 - Hi, Forgive me if I do not do this right but I am new to being online. I was diagnosed with CHF last November. I have been reading the posts and have not seen anyone taking the meds that I am. I am on 160mg of furosemide in the morning and 80mg at night, 0.25mg Lanoxin, 10mg Vasotec twice a day, premphase and 20meq K-Dur twice a day. Because I also stopped smoking last November, I am taking Zoloft and Alprazolam. One of my questions is: compared to other posts, I seem to be taking an awful lot of furosemide. Secondly, about 3 weeks ago my cardiologist put me on Cozaar. I could not handle this. I was sleeping about 18 hours a day and when I was awake, it took every ounce of energy I had to even get out of bed. Thanks for your site. It has answered a lot of questions I had that no one answered. DJones4250@aol.com
Jon's August 25 reply to Diane J's August 25, 1999 - Hi Diane, Welcome to Jon's Place. You are taking a pretty high dose of furosemide, which is generic Lasix. Still, your dose can still go up some before you would have to switch to a more potent diuretic, like Demadex or Bumex. Your doctor might consider adding Zaroxolyn to your Lasix - it is sort of a Lasix "supercharger" and might allow you to get the same results with a smaller dose. Vasotec will have the same basic end result as Cozaar. It is an ACE inhibitor and Cozaar is an ARB. By the way, congratulations on kicking the habit! :-). Jon.
Donna M's August 25 reply to Rod Butler's August 25, 1999 - Hi, I don't know if atrial fib is the same as atrial tachycardia or not, but I had an ablation of my A-V node in December of 1997 after a pacemaker was implanted in October of the same year. Then I was diagnosed with CHF in January of 1999. The electrophysiologist who did the ablation said that it and the pacemaker would not cure my atrial tach but would only control it, hopefully. Since my atrial tach was getting progressively worse, I have always wondered if that continued to happen and is what caused my CHF. The good news is that for the most part, I feel really well and am functioning normally as long as I take my beta-blocker, ACE inhibitor, diuretic and small dose of aspirin, and take care of myself. email@example.com
Pat D's August 27 reply to Debbie H's August 25, 1999 - Hi Debbie and welcome to Jon's Place. You definitely have a right to be here. You're right about fatigue being our constant companion. I think we all struggle with it. I've found 2 things that help: CoEnzymeQ10 (in liquid form) and Ginsing. CoEnzymeQ10 comes in both capsules and liquid, but for some reason the liquid is more readily absorbed by the body so you don't have to take as much to get the same beneficial effect. Another thing that may help you is some mild exercise, such as walking. Start out just going around the block to see how you'll handle it, and as your stamina increases, venture a little farther. My e-mail address is included if you'd like to exchange ideas. Good luck. Pat D. firstname.lastname@example.org
Carolyn B, August 27, 1999 - Greetings, I just want to let everyone know how helpful your input and posts are. I follow both boards as I have 2 teens with DCM, ages 13 and 15. My oldest had her first chest pain ever. They were great when she came to the ER. They did a 12 lead EKG, chest x-ray and hooked her up to the monitor, plus cardiac enzymes. It was deemed "chest wall pain" which is is probably right on target because she just completed her first day of volleyball practice! I am grateful for the great crew who saw her in the ER. Does anyone have any input on chest wall pain? What should I know, even if everything does come up negative? email@example.com
Gus R's August 27 reply to Donna M's August 25, 1999 - Hi Donna and Rod, I've never had atrial tachycardia that I know of but do have intermittent a-fib and flutter. I looked up the definitions of all 3 at "The On-line Medical Dictionary" and although they are technically different, I doubt if there is much difference to one who has them. I copied their information to post here but deleted it after thinking about the copyright laws. You can see it at The On-line Medical Dictionary which can be found via the Links page. As to Rod's post, I'm clueless. He had ablation and wonders if he traded one problem for another. I haven't and wonder if I might have a better life if I did. From what I've learned here and from other sources, the odds of success with ablation are better than those at Las Vegas, but... Best wishes to all. Gus R. firstname.lastname@example.org
Harriet's August 27 reply to Candy P's August 25, 1999 - Hi there, I just want to jump in and tell you that my prayers will be with you between now and September 13 and beyond. Open-heart surgery isn't even a pleasant thought, much less a pleasant deed. May God forever be present and considered in your experience. My own experience with the surgery and rcovery has been rewarding in ways I can't begin to describe. email@example.com
Ginger's August 27 reply to Sherrell's August 25, 1999 - Hiya, At night if I sleep with my arms bent or above my head, they go to sleep and get very numb. So you're not the only one. I haven't asked my doc about it yet but am going to on the 10th. If I get a decent answer, I will let you know what it is. Stay well, ya'll. Hugs, Ginger. firstname.lastname@example.org
Phyllis A's August 27 reply to Diane J's August 25, 1999 - Hi Diane, I was also diagnosed with CHF and cardiomyopathy, in 1997. I just went to my PCP today and she increased my Lasix to 160mg in the morning and 80mg in the evening. I am also retaining too much fluid and I only drink about 48oz a day. When it is hot, I drink about 2 liters. I was on 80 and 80 but was not urinating as much as I used to on this dose. I'm also on 20meq K-dur twice a day and Zoloft too. I was on 2.5mg zaroxolyn but I did not do well and was admitted to the hospital with dehydration so you are not alone. Hang in there. The Lord will see us through. email@example.com
Jon's August 27 reply to Phyllis A's August 27, 1999 - Hi Phyllis, You bring up a good point that is often not emphasized here or by CHF doctors: dehydration versus diuretics. Dehydration can give you symptoms very similar to CHF and just as dangerous. If you are having a lot of unusual fatigue, lightheadedness especially when standing after sitting or bending over, if you get dizzy or have stomach cramps and so on, be sure to consider dehydration. Balancing your diuretics/potassium doses and your fluid intake can be tricky. I have flubbed it and slipped into dehydration myself and it's more than a bit uncomfortable - it's misery! (ask Jack, I think he's been dehydrated before).
My own CHF doctor tells me that the line between keeping us "dry" and comfortably breathing, and dehydration is very thin. Marc Silver also mentions this in his book. So be sure to have your blood drawn and checked for proper electrolyte balance (potassium, etc,...) and keep your fluid intake as consistant as possible day in and day out so your diuretic dose can work the same every day. Jon.
Pat ?, August 27, 1999 - Hi, I have now been diagnosed with CHF and I also have pulmonary edema. What can I expect? firstname.lastname@example.org
Dee K's August 27 reply to Joy R's August 25, 1999 - Hi Joy, Yes, I have CHF and COPD. Three years ago I had lung surgery and my 02 levels never got in the 90s after that but they said they didn't want to put me on 02 unless it dropped below 85. In February of 1999, I was in the hospital for CHF and the doctors put me on 02 then, with my readings in 84-86 range, to use only at night and when really active but I kept getting worse. In May I had to have a heart cath and while there, they put the oxi-pulse monitor on and the 02 off to see how I was doing. After 20 minutes it had dropped to 76 and I was dropping out. They let it get to 72 before putting my 02 on and I was blacked out. I am now on 02, 24/7. I'm still getting mixed messages from the 2 doctors - another reason for doing the research here and at other sites on the Web. Thanx for your post and let me know if you have any other info of help. I'm so in the dark about all this still. I bless Jon every day and the friends on the The Beat Goes On for helping me to know anything at all. Love, Dee Knight. DK1992@aol.com
Greg B, August 27, 1999 - Hi, For those who might have noticed and are interested in my 8/22/99 post, where I stated I was seeking a computer program to help plan my diabetic meals: Well, I found one. Nutritional Computing concepts. Their website address is http://www.ncconcepts.com. I hope this will be helpful to all who have been having similar problems of preparing meals to help control diabetes. email@example.com
Jim Hall, August 28, 1999 - Hello Friends, I have not written in awhile because I was waiting on the results of a MUGA test that I recently had done. First some background on me: I am a 46 year old male who was diagnosed with DCM and CHF on 6/2/97. At that time my EF was 16% and my heart was about twice the normal size of a healthy heart. My local cardiologist immediately sent me to the Barnes Hospital Transplant Clinic in St. Louis, Missouri. I was reevaluated there and the diagnosis was the same as my local cardiologist had given me.
I was put on a regiment of meds which were 80mg of Diovan (ACE 2 inhibitor), 0.25mg of Lanoxin, 50mg Coreg (I started taking Coreg in April of 98) and 5mg of Warfarin for a-fib. I also took some non-prescription drugs such as 75mg of CoQ10 and something called Homocysteine Defense Formula (which is a combination of folic acid and vitamins B6 and B12). In August of 1998, I had another MUGA done and my EF had improved to 31% but my heart was still dilated and I still had CHF. My latest MUGA was done on 8/19/99 and the results were unbelievable. My EF is 60%, my RVEF is 41% but the most astounding thing of all is that my heart has completly returned to normal. It is normal size and there is positively no evidence of of any muscle damage to my heart. My doc could not believe my heart had returned to normal after 2 years. He said it is almost unheard of for a heart to return to normal after that amount of time. He said that if a heart doesn't return to normal in the first 6 months after diagnosis that the chances of it returning to normal are almost non-existent.
I know many of you here are in the same boat as I was 2 years ago but I am living proof that there is hope for a return to a normal life. So don't give up hope, take your meds, and do what your doc tells you to do. There is much research going on to find a cure for this insidious disease and new meds such as Coreg may in fact reverse some of the ravages of heart disease. I know this letter is long and I haven't said all I could about this subject but if you want to e-mail me, feel free to do so. I will be glad to go into more detail on a one-on-one basis. Remember to keep your spirits up because there is hope for all of you. God bless you all. Jim. JHall58317@aol.com
Clarence Martin, August 28, 1999 - Hi, I was diagnosed with CHF on August 19. So for everything seems to be going fine, but I have a couple of questions that are off the usual medical track. Perhaps someone can answer them for me. Fluid retention is a big problem for me. The gym at which I work out has a sauna, which I never used in the past. Does use of a sauna help divest the body of retained fluids relevent to CHF? Second, I have been avoiding caffeine for the past 2 years. As a warm beverage, I have substituted Ginsing tea. One does get something of a mild rush from it. Any wisdom on the use of this herb with this condition? Thanks for any assistance you can offer. firstname.lastname@example.org
Phyllis A, August 28, 1999 - Hello all, Shirley, You did not leave your e-mail address when you e-mailed me but I was diagnosed with breast cancer in 1993. I finished treatment in 1994 and got married to my wonderful husband in May of 1994. I received radiation treatment in June of 1994 for 7 weeks, 5 days a week. My EF is higher than most at Jon's Place. My doctor said my case is mild. There are times when I can't breathe and swell up in my belly so that I look pregnant from retaining fluids, regardless of the Lasix. Last month, I thought I was going to get a pacemaker for irregular heart beats but the doctor increased my meds from 240mg of verapamil to 360mg. With God's help, I am making it. Don't forget to e-mail me your address. email@example.com
Phyllis A, August 28, 1999 - Dear Vicki, You said you read my message at Jon's Place about Adriamycin and CHF and that you needed to ask me some questions but you did not leave your e-mail address. Send your address to me via e-mail and I'll be happy to answer ASA. God bless us all. firstname.lastname@example.org
Joe S, August 28, 1999 - Hi, Over the last few weeks, several things have happened which I think are great. I wrote a few weeks ago that I was having strong reactions to onions. Hope McNeil shared with me about her husband having the same problem and solved it with Peptic-AC. Then I finally found something on GI problems at http://www.acg.gi.org. I combined the two and haven't felt this good for years. In my case, I am beginning to wonder if a lot of my problems may be diet related? Wouldn't that be something, that this 55 year old problem was something as simple as that? SI'm sort of kidding but not really. I still have a problem. Yesterday I drove to a customer's house 30 miles away and came back exhausted, and whenever I bend over or lift anything heavy I still get dizzy and have to go to bed but I can honestly say I feel great as long as I don't overdo it too much.
Side note to Ginger: When the patient said to the doctor, "When I do this, it hurts" the doctor answered, "Then don't do that." Ginger, if sleeping with your arms over your head hurts, don't do it. Seriously, I have found many habits I have had to break. Joe S. JES@StevensonLighting.com
Doug K, August 28, 1999 - Hello to all of you of course, but this is a message to Muriel mainly. Please send me where to meet you, Muriel. I just realized that you may not be at your home computer so I thought I would try to reach you this way. I am leaving tomorrow morning, but I will have access to a computer when I get to Knoxville, and I will check my e-mail at email@example.com for directions to you. I hope you are checking out Jon's Place! Now back to our regularly scheduled programming for the rest of you. firstname.lastname@example.org
Joy R's August 28 reply to Dee K's August 27, 1999 - Hi Dee, I figured if you had a O2 saturation that low you probably had lung involvement. If you are on O2 24 hours a day, surely that helps some but like I said, when my O2 saturation was in the 80s I was in pretty bad shape. I have home oxygen and use it intermittently, usually when I am short of breath. I am also on IV dobutamine all the time for my heart and IV hyperalimentation every night for my nutrition; basically I am a train wreck but I try to stay uplifted and am thankful each day that I live to see another. You don't say what else is wrong but I guess CHF and COPD is enough. Heather, who is in the bios is also on O2 24 hours a day and has some amusing anecdotes about living with an oxygen tube 24 hours a day. Out of curosity I was wondering what others' lowest O2 sats were and how they were affected by the low sats. Mine go to about 87 or 88 when I'm in difficulty, and I usually get put in the hospital when they do. So Dee, I do hope the oyxgen brings yours up enough that you can enjoy life without the constant straining to breathe. I will add you to my prayers and again, thanks for this site and all the wonderful people who visit here. Joy. email@example.com
Ruthie A, August 30, 1999 - Hi to all, Especially the newbies. Well, I am now an empty nester and my son is safely ensconced in college. I did better on the trip than I thought I would and was able to keep my fluid levels under reasonable control. Unfortunately, I injured my sciatic nerve - please don't ask how <g> - and I can hardly walk but this is only temporary and eventually all will be well.
On a separate note, I think a couple of you out there have been diagnosed with Diastolic Heart Failure as I have. My CHF doc sent me some medical journal articles on DHF that showed some very interesting aspects to this form of the illness. One of these is that, while DHF has a slightly lower initial mortality rate, Ace inhibitors are not that effective in preventing or slowing down the progression of the condition. Rather, as far as hospital readmissions go, the rates are a little higher with DHF patients than those with conventional heart failure, even with Ace inhibitor use. Long term mortality rates do not show any difference between the two. If you are interested in these articles, e-mail me and we will work something out. Ruthie A. firstname.lastname@example.org
Mark N, August 30, 1999 - Hi, I am new here. I am 39 years old. I have a wife of 17 years and a daughter age 14. I had cardiomyopathy about 3 years ago. I guess I did not take it quite seriously enough, as here I am with CHF. My EF is 25% - what does that mean exactly? I do not tire easily and feel better than ever now but maybe that's because I dont drink or smoke now. The doctors tell my life style was the cause of my heart problems. Is there anyone out there that got this the same way? I do get lightedheaded once in awhile and it's a real pain. Any thoughts would be great. Thank you in advance. Codoors@aol.com
Candy P, August 30, 1999 - Hi, I'm still at my daughter's so I still have use of her computer. Several things have happened since July. I was denied SSD and SSI. This is not uncommon for the state of Michigan. I had to terminate my job. However, I can still get Long Term Disability until the year 2001. I have to pay for my insurance premiums. That's no problem since the premiums are low. Did you know it is a law that a person can choose to buy their insurance for about 18 months after leaving a job. (Jon's note: look up COBRA on WWW if interested) My agency told me I had 60 days to make up my mind if I wanted to buy in. Of course I chose this option.
I don't know who makes a determination on SSD but whoever it is could do a better job on reviewing. They agree I can no longer do my past jobs and believe I have all the medical problems I said I have, but because I have an education of a BSW, I can do something even if it's less than my previous employment. I filed a reconsideration and now I can add cardiovascular disease as well.
I also learned that although I have CHF, my fluids retention at the present time is because of no blood getting to my feet. My sodium restriction is at 4 grams. This was written on my orders. I don't go above 2500mg. I have numb and painful feet most of the time. I get cramps in my legs when I walk and my feet and lower legs turn several different colors, ranging from red to blue. So if anybody is experiencing these symptoms check with a doctor and don't assume it is part of CHF. GrPota@aol.com
Christine, August 30, 1999 - Hi, I just turned on my computer today since I was on a break preparing my paperwork for SSD. I got an appointment with them and had to fill the application out and provide them with all my medical records, which I fortunately had since I was also reviewing my work comp case. Well, I was reading Paul M's post today and he mentioned the alpha lipoic acid. I am glad you are using it. I started about 2 months ago for my diabetic neuropathy in my legs. I am able to walk more and have no pain, numbness or tingling any more. I am using about 100mg and haven't quite got up to where you are and will be upping the dose soon, which should make some difference in my insulin, which I have not noted yet. Could it be that I am not taking as much as you?
I would like to know how much less in your insulin are you taking and if you have made any change in your diet? I too take insulin and hope to get it down. I am also taking L-Carnitine and Chromium for my diabetes and it seems to be better than it ever has been before. Aloha and and I hope to hear from you on the ALA. Christine. Chrisd1950@aol.com
Kim D, August 30, 1999 - Hi everybody, I was diagnosed with CHF and cardiomyopathy 6 months ago. My meds include 40mg furosemide, 25mg Toprol XL, 0.25mg Lanoxin, 5mg Prinivil, 10Meq Potassium CL twice a day, and 0.1mg Synthroid for my underactive thyroid. My EF was at 15%. There is no comparison to how I feel now, compared to then. I feel like a new woman. I have gone from suffering severe SOB and not being able to walk from one end of the house to the other without resting, to walking 1½ miles with no fatigue. I have gone from sleeping all day and all night and having no energy whatsoever, to actually being able to do light housework and having a "normal" sleeping pattern.
So what's my problem? My cardiologist wants to increase my meds. He very recently put me on the Toprol and wants to double my Prinivil and then start me on an additional med but he hasn't said what yet. So here's my question: If I'm doing sooo much better, why mess with a good thing at this point? Why not just continue on as it is for now? Also, I have another question regarding tests and procedures. When I was first diagnosed, I had an EKG and an echocardiogram and was told I would very probably need a heart transplant. Shortly after this I had a heart cath and was told my heart was in much better shape than he'd thought and that my valves looked good and that I had no blockages. I haven't had any tests since to determine if there has been any improvement other than how I am feeling. How often should a person have, for example, an echo?
I have not had much in the way of lab tests either since my diagnosis and this concerns me. One of the many things I have learned from this site is, when in doubt, ask questions! On one hand, I don't want to blow things out of proportion or seem like I'm overreacting. Then again, on the other hand, this is my life here! My cardiologist is supposed to be very good, yet every time I have asked a question regarding side effects from meds, he pretty much blows it off and tells me whatever I've experienced can't be from the meds I'm on. Then I read in the posts here how so many others go through the same things I have - but it's not CHF, right? Hmmmm, maybe it's time I seek out a second opinion. Thanks for hearing me out! Take care, Kim D. email@example.com
Donna M, August 30, 1999 - Hi, I would like to hear from others who have had problems with Coreg. My stint started a year and a half ago. During that time, I have been able to get my dose no higher than 9.375mg twice daily because of near-syncopal episodes and BP falling to 80/50 range and sometimes lower. My PCM of the time stopped my Coreg after having said all along that it wouldn't help me since I have a restrictive type cardiomyopathy (stiff heart syndrome). It was stopped for 2½ weeks and then resumed because of SVT along with the previously documented V-tach. Through all this, I have developed what my now regular attending cardiologist says is peripheral neuropathy. With the last two 3.125mg bump-ups of Coreg, my leg and foot pain grew drastically worse, literally overnight. I am medicated now with Neurontin and Darvocet-N for the leg and foot pain, and have developed numbness and tingling of both legs from the knees down. My current dose of Coreg is 6.25mg and I have not tolerated increases but every 2 months or more in 3.125mg increments.
In all honesty, I feel I have continued to decline and cannot say that I have felt any improvement due to the Coreg and that I have given it a fair trial. If I can get relief from the leg and foot pain, I feel the decision that it is best for me is to stop the Coreg. Thankfully, I have had some changes in doctors since I finally received my Social Security Disability and by the time I received the notice, my Medicare had already kicked in.
I read the forum here occasionally and just thought I would ask for experiences of others who have had problems with Coreg. In so many ways, I am grateful that most of you who have been placed on Coreg haven't had significant problems tolerating the drug. My decision is pretty well made and I have the support of my husband in this decision as well, since he is my caregiver and sees me every day to know what it is like. Please feel free to write me personally unless you feel your experience is beneficial to others on the board which it may well be. Sorry this is so long! Thanks for being here, folks! Donna M. firstname.lastname@example.org
Claudia S, August 30, 1999 - Hi, After reading Jim Hall's good news post of 8/28, I am prompted to ask if anyone knows if all Ace Inhibitors 2s are alike? He was taking Diovan, and I am taking Cozaar, and I know there are others. Does anyone know the difference or why the doctors choose different medicines. That is, other than what is being pitched by salesman.
Also, I am wondering if anyone has heard of Coumadin helping in maintaining a blood clot in the bottom of a heart, so as to grow cells over that clot in a period of about 2 months? This is what my cardiologist is telling me. I have read about the clot growing cells over it but am not sure what role Coumadin plays in this? Does anyone else have this clot in the tip of their heart, and what have you been told?
My cardiologist also stopped my Lanoxin, and I seem to be fine. I am wondering if this is a necessary drug, as part of what is needed in helping to shrink the heart. I sound as if I don't trust my cardiologist. Truth is I have only seen him 3 times, for maybe 20 minutes total, and I don't have that much confidence in doctors as a whole. This is all new to me since May of this year, and I guess I have learned so much here, I thought I would ask. I hope everyone is having some good days. God bless. Claudia, age 53, EF 15%, IDCM, CHF. CMSchm@aol.com
Pat D's August 30 reply to Clarence Martin's August 28, 1999 - Hi Clarence, You didn't say what meds you're on. I just went through a scary experience from getting too hot and having the bottom drop out of my blood pressure (I'm normally hypertensive). My cardiologist told me that people on antihypertensive medications shouldn't get too hot; it causes their blood pressure to drop too low too quickly. So please keep that in mind. Even before I was taking medicine for my blood pressure, but after I'd developed heart problems, the heat has been very hard on me and and I'm learning from others here that it isn't unusual, so I'd discuss the sauna with my doctor before using it. Pat D. email@example.com
Jon's August 30 reply to Kim D's August 30, 1999 - Hi Kim, Your cardiologist probably wants to raise your Prinivil because of a study earler this year. It showed that low doses of Ace inhibitors did not improve CHFers nearly as much as higher doses. Your current dose is quite low and he is probably hoping you will improve even more with a higher dose. Improvement is never guaranteed of course, but at least it shows he pays some attention to the current medical literature. :-)
Honestly, if you are stable and have been for awhile; echos, caths, MUGAs and such really are not called for. On the other hand, blood tests are very important. They track your electrolyte baalnce, which can get terribly screwed up with diuretic use and this is no laughing matter since a serious electrolyte problem can kill you. If you take Lanoxin, dig levels also need to be checked . Also, tests for liver damage are necessary if you take a cholesterol lowering drug. Urine samples may also be necessary. These tests should be done at least every 3 months and should also be done whenever one of these drugs is discontinued, has a dose change or is switched to another drug.
About your doc blowing off meds questions, your best bet is to go to the manufacturer's Website of the drug in question (or go to the Links page) and print out all their information, then study it. Then ask your local pharmacist about the drug, its interaction with your other drugs, and any specific questions you have. Then get your doc on the line and pin him down on some specific answers to your questions. At this point, you will have plenty of good info to back up your concerns and if he blows you off anyway, it's time to get another opinion. Hopefully, he will take you seriously with the information you have carefully acquired. Jon.
Jon's August 30 reply to Claudia S' August 30, 1999 - Hi Claudia, Lanoxin is considered a necessary drug for treating CHF in general, but your doc may have good reasons for taking you off it. The only way to be sure is to ask. See this page, this page and this page (let the page load all the way and it will take you to the right articles automatically). Jon.
Kylie Needham, August 30, 1999 - Hi, Thank you everybody who has e-mailed me about my son Michael (age 13). I am in the process of getting back to you but have a lot of messages to answer. This is certainly the place to get help! Now my mother would like some help. She had a double bypass done 10 years ago and has to take medication to control her cholesterol. She was on Lipetx but after 3 years suffered a lot of side effects like stiff joints and had to discontinue. Now the doctors have her on "Lopid" (600mg Gemfibrozil, Methyl and Propyl). She takes 2 tablets daily. Has anyone experienced side effects with this drug? If so, what? Any help would be appreciated. firstname.lastname@example.org
Lydia Moore, August 30, 1999 - Hello everyone, I am a new CHFer and want to express my gratitude to Jon for having this wonderful site available; what a wonderful gift. I was diagnosed with cardiomyopathy and congestive heart failure about 4 months ago. This was such a shock. My father died of this disease at age 78. My doctor believes I inherited it. I take Lasix, Diovan, Coreg and K-dur. My EF is 20%. I am on the heart transplant list at Stanford, where I have a cardiologist who works with me on my case, along with my regular cardiologist. I go back to Stanford the 9th of Septmeber for some tests, at which time I will know more. I have learned a lot about this disease from this site, for which I am very grateful. My most important medication is God. If I skip a dose of Him, I feel lost and I am in big trouble. Without Him, it would be very difficult to deal with this. I am praying for all of you and thanks again for being here for us. Lydia Moore. email@example.com
Jack's August 30 reply to Clarence M's August 28, 1999 - Hi Clarence, What everybody needs to remember about ginseng and other herbal "remedies" is that they are drugs. They interact with the prescription drugs you are taking and they have side effects. At least with prescription drugs the doctor knows what the side effects can be but when you mix them with herbal remedies, you are asking for trouble. Specifically, ginseng should not be mixed with Coumadin and since ginseng is a mild stimulant, it's questionable for heart patients. Read http://www.healthcentral.com/drdean/deanfulltexttopics.cfm?id=14277 for more info.
As for saunas, no! Saunas are bad for people with heart failure. firstname.lastname@example.org
Connie R, August 30, 1999 - Hi everyone, I have been reading posts and archives for quite a while now and have learned so very much. My daughter, the nurse, is very glad I found this site and am becoming proactive in my medical treatment. I would never have found the courage to approach my doctor about Coreg if I hadn't read what was posted. My doctor doesn't like to use Coreg because he has to monitor the patients more closely. I am now on 12.5mg twice and day and will go up to 25mg on Wednesday. I am also adjusting to the Coreg with little or no bother. That really surprised my cardiologist. I was diagnosed with CM in 1995. My EF by cath is 20 to 25 and by echo is 30. I didn't take this seriously until I found myself with ventricular tachycardia (8 bps) this past March. I was put on Pacerone then and have had no trouble. I do have a small question. I realize that it is so minor compared to what you all have faced. Does anyone else have pericarditis often? I have had enough of a problem with this, that it is scarring my heart. Thank you for listening and and for all the wonderful information you provide. email@example.com
Jon, August 30, 1999 - Hi everyone, Because I use freeware to check over my site for broken links - a never ending job with a site this size - I don't make Urls clickable much unless they are to one of my own pages. This will in the long term save me dozens of hours of work, so I really need to do it this way, even though it can be inconvenient for you guys. That bugs me because you have all been incredibly patient with me and my many quirks as caretaker here.
If you use Windows 95, the "copy and paste" method is a very, very easy way to use the Urls anyway, without re-typing anything. In fact, this may be the absolutely best feature in Windows 95, once you get used to using it. Jon.
Heather S, August 31, 1999 - Greetings Friends, It seems a long time since I posted. With rehab 3 days a week to make life a mad scramble, I'm so behind in everything, especially my mails, but it's worth it for the benefits of physiotherapy despite my dislike of torture. I have walked up to 3 kilometers (with puff'n'pant breaks), weeded the poor garden and actually put my socks on standing up! I still have the odd bad day with extra SOB accompanied by swelling of the fingers and ankles. I can tell by my rings and by the depth of the imprint left by my socks in flesh. <g> I catch any CHF episodes in the bud with Lasix and Aldactone and not kissing anyone with a cold. <g>
By the way, I notice Phyllis and others were talking about quantities of diuretics. In my case, the amount of Lasix made absolutely no difference to the swelling until Aldactone was introduced as an accompaniment. This always brings it under control quickly, as well as replacing lost potassium. My greatest difficulty is my constant cigarette craving, which I alleviate with food, which contributes to a (definitely not fluid) weight increase. Help!
Lastly, talking of help, my Jessica who is almost 15 has just been diagnosed with high blood pressure. The GP had blood and urine tests done for all the normal infections and organs, and the results have been negative. He is talking pediatrician at this point. The problem seems to go hand in hand with headaches and frequent nausea and even vomiting. Does anyone have any idea what we might look for? My thanks once more to Jon for this site and my love and best wishes to you all. I think of you as my extended family. Heather. firstname.lastname@example.org
Jon's August 31 reply to Heather S' August 31, 1999 - Hiya Heather, Just a long shot but Jessica's symptoms sound like classic migraine. Worth mentioning. Jon.
Tom S, August 31, 1999 - Hi, On a light note, for all you ex-smokers out there, I had a huge laugh from Philip Morris, manufacturer of Marlboro's; of which I bet I smoked thousands of packs prior to quitting several years ago. My wife continues to smoke (very moderately) and between her and a lot of friends and neighbors, and even momma-in-law, we accumulated over 7,000 Marlboro miles, which can be redeemed for goodies such as shirts and cameras, etc. Well, I had to call the Marlboro Miles redemption center for my wife to get some information and they refused to talk to me because I stated that I was a non-smoker. Isn't that a switch?!
Mark N, August 31, 1999 - Hi Jon, What would be considered an average amount of Zestril and Lanoxin. As I was reading Kim's post, you said the more the better? I take 5mg Zestril and 0.25mg Lanoxin. email@example.com
Jon's August 31 reply to Mark N's August 31, 1999 - Hi Mark, There really isn't an "average" for CHFers on most meds. It very much depends on what each individual can tolerate, and on each person's end result with each med. I currently take 40mg Monopril once a day. I used to take Vasotec and have taken as much as 40mg twice a day of that. You and your doctor must gauge your quality of life versus whatever gains may be made in "numbers" or life span for each drug. See this article.
Another thing to remember is that doctors prescribe different ACE inhibitors for different people for different reasons. Drug companies fund major drug trials, but only for their drug. So one ACE inhibitor manufacturer may fund a study that proves (or not) their ACE inhibitor decreases heart size in CHFers, like Merck did with this trial for their drug, Vasotec (enalapril). Another manufacturer might fund a trial proving (or not) that their ACE inhibitor increases life span for people with hearts weakened by heart attack. A manufacturer may even test their drug against the competition like Bristol-Meyers did here. So, a doctor may use these trial results, and say, "Hmmm, your heart is quite enlarged, so I'm going to put you on Vasotec twice a day." The final dose will take some time to figure out. Another doctor may say, "You've had a heart attack and now have a weakened heart. I'm putting you on Mavik (trandolapril) since it has been shown to increase life span for people in your situation."
Please note that all ACE inhibitors might have these same wonderful effects, but only certain ones have been proven to have them in trials. Those trial results are all your doc has to go on besides his personal experience treating CHFers. His experience will hopefully help him decide what the best dose is for each patient. I hope this helps some. I know I wander aimlessly sometimes without ever hitting the answer. <g> Jon.
Susan P, August 31, 1999 - Hi Friends, I've been doing some Net surfing and I found a wonderful site. It's huge and gives tons of plain language information about our hearts, and everything else. I would recommend it highly to everyone, especially our newbies. It's a great supplement to all of Jon's info. http://www.onhealth.com/ch1/condctr/cardio/. firstname.lastname@example.org
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.