The paperwork never ends The Archives
July 1-15, 1999 Archive Index CHFpatients.com

Bev T 7-1     Wolf Parkinson White syndrome & EPS questions
 
Helen O's 7-1 reply to Jana B's 6-28     crave chocolate more now
 
Helen O's 7-1 reply to Norma's 6-30     episodes of exhaustion
 
Helen O 7-1     great news - approved for SS!
 
Ginger's 7-1 reply to Danny's 6-30     chat room & webtv, & more
 
Pat L 7-1     update, Coreg experience
 
Joe S' 7-1 reply to Norma's 6-30     sudden fatigue, questions about fog and wheezing
 
John B 7-1     drug trial update & more
 
Lisa H's 7-1 reply to Norma's 6-30     sudden fatigue episodes
 
Lynn D's 7-2 reply to Joe S' 6-30     fog, heat & humidity
 
Curtis S 7-2     vision & tingling in finger questions
 
John Len's 7-2 reply to Joe S' 6-30     fog & smog
 
Robin Lynn 7-2     intro, EF question & more
 
Aunalee 7-2     intro, life span question
 
Tom S' 7-2 reply to Helen O's 7-1     SSD & to Brenda
 
Rick M's 7-2 reply to Danny's 6-30     coping
 
Jill S' 7-2 reply to Lisa's 6-30     sudden fatigue, & to Norma
 
Lisa H 7-4     does anyone take amiodarone?
 
LeeAnn D's 7-4 reply to Jill S' 6-30     enjoyed the story
 
Hope M's 7-4 reply to Curtis S' 7-2     surgery, meds, sensations, vision
 
Hope M's 7-4 reply to Norma's 6-30     sudden fatigue episodes
 
Hope M's 7-4 reply to Cecil's 6-30     Coumadin & weight gain
 
Pat L's 7-4 reply to Curtis S' 7-2     visual disturbances & Lanoxin
 
Joe S' 7-4 reply to Lynn D's 7-2     smog, questions about eating out & more
 
Al M 7-5     Coumadin & weight gain
 
Tom S' 7-5 reply to Curtis S' 7-2     tingling, vision, sensitivity to body
 
Jon 7-5     page update delays & e-mail addresses
 
Lori P 7-5     denied for SSD in Missouri, any advice?
 
Leland Yee 7-5     update, doc's advice, beta-blockers & more
 
Brenda H 7-5     Norma & Pat, Coreg & fatigue
 
Leland Yee 7-5     weight gain/loss & Coumadin
 
Brenda H 7-5     SSD vs SSI question
 
Joe S' 7-5 reply to Curtis S' 7-2     eating right & exercising
 
John Len's 7-5 reply to Joe S' 7-4     food poisoning a possibility
 
Diane T's 7-5 reply to Lisa's 6-30     intro, valve problems, near-fainting questions
 
Doug K 7-6     Coumadin and weight gain
 
Robin Lynn 7-6     thank you all for the welcome
 
Ben B's 7-6 reply to Robin Lynn's 7-2     have you seen an electrophysiologist? & more
 
Jana B 7-6     I'm back home! update
 
Doris R's 7-6 reply to Aunalee's 7-2     coping
 
Tom S' 7-6 reply to Brenda H's 7-5     SSI vs SSD & more
 
Cecil's 7-6 reply to Leland Yee's 7-5     taking trips with low EF
 
Cecil's 7-6 reply to Lisa H's 7-4     personal amiodarone experience
 
Jack's 7-6 reply to Jon's 7-5     AOL mail & geocities' FTP
 
Aunalee 7-6     need new doc & distended stomach questions
 
Jon's 7-6 reply to Aunalee's 7-6     swollen liver a possibility
 
Lisa 7-7     just had heart transplant
 
Bob's 7-7 reply to Lisa's 7-4     amiodarone experience
 
Linda P 7-7     to Ruthie A
 
Phyllis A 7-7     to Ruthie A
 
Cindy 7-7     SSD experience so far
 
Victoria F 7-8     intro, self-education & more
 
Margie F 7-8     heat, headache & Coumadin questions
 
Robin Lynn's 7-8 reply to Ben B's 7-6     faith, heart rhythm problems, tests & more
 
Bobby F's 7-8 reply to John B's 7-1     trial drug question & to Lisa
 
LeeAnn D's 7-8 reply to Lisa's 7-7     congrats & to Cindy
 
Cloyd P 7-8     questions about near fainting & hot flashes in head
 
Will W's 7-8 reply to Lisa's 7-7     congrats on the transplant
 
Carol W 7-8     question about CHF drugs bad for kidneys per Aunalee
 
Lisa M 7-9     update post-transplant
 
Robin W 7-9     Robin had a heart transplant
 
Donna B 7-9     can't get my medical records - what do I do?
 
Staci H's 7-9 reply to Cloyd P's 7-8     cath/dye experience & question
 
Lee R's 7-9 reply to Cloyd P's 7-8     question about fainting feeling
 
Jon 7-9     page problems
 
Lynn D's 7-10 reply to Donna B's 7-9     getting a copy of all your medical records
 
Adam ? 7-10     intro, awaiting transplants
 
Joe S' 7-11 reply to Cloyd P'd 7-8     sensitive to symptoms & more
 
Carolyn H's 7-11 reply to Donna B's 7-9     getting a copy of your medical records
 
Linda O's 7-11 reply to Donna B's 7-9     getting a copy of your medical records
 
Cindy's 7-11 reply to Donna B's 7-9     getting a copy of your medical records
 
Lori P 7-11     INR questions (Coumadin use)
 
Angie H 7-11     difficulty coping, working, being a mom & more
 
Donna Finney 7-11     has anyone used Occudata for SSD help?
 
Crystal S 7-11     coping with heat, questions
 
Aunalee's 7-11 reply to Jon's 7-6     thanks for info, support groups & more
 
Bobby F's 7-11 reply to Jill S' 7-2     loved that story
 
Kathleen M's 7-11 reply to Cloyd 7-8     head "noise" episodes
 
Jack's 7-11 reply to Donna B's 7-9     getting a copy of your medical records
 
Jack's 7-11 reply to Joe S' 7-5     low carb diets & sodium intake
 
Julie 7-11     questions about depression & Coreg
 
Deanne 7-12     support, Diovan, moving, questions & more
 
Jon's 7-12 reply to Deanne's 7-12     support, Diovan trial
 
Tom S' 7-12 reply to Donna Finney's 7-11     INR, Disability cases
 
Jon's 7-12 reply to Tom S' 7-12     INR, Accudata
 
Ben B 7-12     SSD forms question
 
Crystal S' 7-12     this site, invisible disease, medical records
 
Jon's 7-12 reply to Crystal S' 7-12     doctors, medical records
 
Deanne's 7-12 reply to Crystal S' 7-11     seek drug trial info
 
Peggy Carter 7-12     sleep problems
 
Jon's 7-12 reply to Peggy Carter's 7-12     sleep problems
 
Tom H 7-12     questions about diabetic diet
 
Jon 7-12     answering posts
 
Joe S' 7-12 reply to Jack's 7-11     Atkin's diet & sodium, this message board
 
Joe S' 7-12 reply to Julie's 7-11     meds & depression & paranoia
 
David ? 7-13     update, Coreg & more
 
Julie K 7-13     got that Spirit-filled feeling
 
Tom S' 7-13 reply to Jon's 7-12     SSD, INR
 
Madelyn J 7-13     importance of getting med records
 
Roger H 7-13     heart rate questions
 
Jon's 7-13 reply to Roger H's 7-13     hope others answer too
 
Donna R M's 7-13 reply to Donna B's 7-9     getting medical records copied
 
LeeAnn D 7-14     lifting with CHF question
 
Jon's 7-14 reply to LeeAnn D's 7-14     lifting with CHF
 
Julie 7-14     thanks, Coreg & other pills
 
Tom S 7-14     don't juggle meds yourself, potassium & more
 
Jon 7-14     delay
 
Ben B's 7-14 reply to Ben B's 7-13     importance of exercise, heart rate
 
Ben B 7-14     sodium in certain foods question
 
Jon's 7-14 reply to Ben B's 7-14     sodium in certain foods theory
 
Claudia S 7-14     Coumadin vs aspirin questions & more
 
Phyllis A 7-14     pacemaker questions & more
 
Crystal's 7-14 reply to Deanne's 7-12     Diovan drug trial experience
 
Hope M's 7-14 reply to Peggy C's 7-12     meds may be keeping you awake
 
LeeAnn D's 7-14 reply to Roger H's 7-13     heart rate & BP, no fight or flight response
 
Al H's 7-14 reply to Donna F's 7-11     Occudata firm for SSD
 
Robin W 7-14     update on Robin's post-transplant progress
 
Terry T 7-14     Coreg experience & more
 
Jon's 7-14 reply to Terry T's 7-14     Coreg experience & more
 
Cecil's 7-14 reply to Tom S' 7-14     financial aid for Rx drug use
 
Kim S 7-14     great news after MUGA!
 
Rod Butler 7-15     potassium chloride salt substitute question
 
Jon's 7-15 reply to Rod Butler's 7-15     potassium chloride salt substitute
 
Ruthie A 7-15     update, prayer request & more
 
Will W's 7-15 reply to LeeAnn D's 7-14     lifting restriction
 
Joe S' 7-15 reply to LeeAnn D's 7-14     lifting restriction
 
Marc S' 7-15 reply to Claudia S' 7-14     Coumadin, stay aware & more
 
Joy R 7-15     seek support group for nutrition problem
 
Terry T 7-15     didn't mean to discourage anyone :-)


Bev T, July 1, 1999 - Hi all, I haven't posted for a while but took time yesterday to read about a month's worth! One of my doctors had given my name to one of his patients who is being encouraged to go for an electrophysiology study. She called me and I gave her the details of the study but she has Wolf Parkinson White syndrome. Is there anybody out there who has had an EP study done for this and did abalation work or is the AICD a more recommended way to go? (you know what I mean) I'm enjoying the cooler weather in the West Virginian mountains, much better for the heart. The Florida heat and humidity gets to me. Take care and I hope to hear from someone so I can pass on the info. Thanks, Bev T. Mtnmama008@aol.com


Helen O's July 1 reply to Jana B's June 28, 1999 - Hi, The only change I have noticed is that I crave chocolate even more than I did pre-CHF. I am not sure if is because of the CHF, meds, emotions, or combination thereof, or it's because I have had to drastically reduce it. woohoo@imap4.asu.edu


Helen O's July 1 reply to Norma's June 30, 1999 - Hi, I also get those periods of complete exhaustion. Unfortunately, mine are not brief. My cardiologist told me that it is directly linked to CHF, mostly due to the fact that the heart is no longer pumping as it was designed to. woohoo@imap4.asu.edu


Helen O, July 1, 1999 - Hey all, I have great news! I was approved for SSI. I got my letter on 6-30-99. I will only be getting $333.34 a month because I live with my boyfriend and his roommate, and they take care of things financially for the most part. I was so sure they would deny me. I am so happy! Helen. woohoo@imap4.asu.edu


Ginger's July 1 reply to Danny's June 30, 1999 - Hi Danny, The reason you couldn't get in the chat room may not be cause you have webtv. It was down during our last chat time, so we met on ICQ. We have somebody that comes to chat on webtv. Hopefully the chat room will be up for our next chat. Chat days and times are posted on the chat page for all you newbies who would like to come. Also if you want, get ICQ. There are a bunch of us on it and we talk off and on all day long with it. Also, some of you talk about having other problems with your CHF. Read the Me Too! to see who has the same problems you do. It can help to talk with someone that does. If you would like to be added to the page, just let me know. So welcome all newbies and hugs and prayers to all of you. Hugs, Ginger. mystery@laker.net


Pat L, July 1, 1999 - Hi Jon and everyone, As I posted awhile ago, my stress echo showed that my heart functioned pretty well at rest but did not keep up with the increased demands of exertion and exercise at all. My new doctor recommended I taper off Coreg and then stop it completely and see what happened. After 3 weeks (2 completely off Coreg), I went back to him. My resting heart rate was up to 100, so now I am titrating the Coreg back up and am at 6.25mg morning and evening. This new doctor has a goal: to help me feel better, which is a great goal for me, and apparently not my former doc's goal. I feel very comfortable about what we are doing, although dismayed to realize I will probably be on Coreg forever, but at a lower dose than I was on from September of 1997 to this May. The doc thinks that getting my resting heart rate to 80, on a lower dose of Coreg, will relieve the exhaustion and fatigue I had when I was at 25mg Coreg twice a day and my heart rate was consistently below 60 and sometimes 35 or 36. I had less shortness of breath but more fatigue. I do realize that being on Coreg for several years did cause a major improvement in my heart. Its size went down from 7.2 to 5.6 and my resting EF went up to 53. I am certainly much improved from my condition pre-Coreg. I am sorry I went long, I just wanted to share my experience with others who may be struggling with Coreg. Pat. patlat@yahoo.com


Joe S' July 1 reply to Norma's June 30, 1999 - Hi Norma, I imagine a lot of us experience this sudden fatigue. What I do is lay down for at least 15 minutes, usually with my heart pounding in my chest. I lay there and pray and amazingly to me, it goes away very quickly.
     I have a question for everyone. I live on the central coast of California. About a week ago, the usual summer weather came back with heavy night and morning fog. Immediately, my heavy wheezing and sweating came back, not as bad as a year ago, but back. I drove to Los Angeles on Tuesday and soon as I left the fog, my wheezing stopped. Does anyone have any advice? I'm sitting here gasping right now but the fog is still there. Joe S. JES@StevensonLighting.com


John B, July 1, 1999 - Hi Jon, To update everyone on the Smith Kline Beecham experimental drug program, I have been on it for about 2 months now. My results (I am reasonably certain I am on the drug and not the placebo due to some pretty significant blood pressure readings within an hour after I take the medications, as I titrate up to my maximum dosage) have been quite good, I think. My energy has been nothing short of phenomenal. I am working 12 hours a day without the need for naps and I require only 5-6 hours of sleep per night. I have a new, very slight pain in my chest which was not there before. I feel like the energizer bunny. I am only hoping I am not wound up so tight that I just drop over dead one of these days. My doctors have upgraded me from a Class 3 to Class 1.
     Another update: my high protein, low carb diet which I have been on for about 4 months now, continues to keep my diabetes under complete control and I continue to lose weight albeit very, very slowly, in spite of the huge Coreg and Coumadin dosages I am on. I will keep everyone informed but my preliminary feelings are we may have a great new med on the way. jbott4015@aol.com


Lisa H's July 1 reply to Norma's June 30, 1999 - Hi Norma, I sometimes have the exact same feeling you described. I'll go somewhere like the mall or Wal-Mart, that requires a lot of walking and I start out feeling good. Then all at once, whew, I just tell my family I have to leave now. After resting awhile, I feel near normal. The weirdest part is that I never know when I'll be overcome with this feeling. See ya. Lisa. wthall53@aol.com


Lynn D's July 2 reply to Joe S' June 30, 1999 - Hi Joe, The fog, smog and pollution in Atlanta causes the same reaction here for us. The best thing you can do is stay inside and run the air conditioner, or move. When we have smog days, the weather folks send out the notices for all people with respiratory or heart problems to stay indoors. The heavy humidity adds to the problem. I hope you get some relief. lynndaniel@mindspring.com


Curtis S, July 2, 1999 - Hi, I'm a 38 year old male with CHF. I'm on all the "right" meds. Does anybody experience spots like you've rubbed your eyes and can't focus? Also, the pinky on my left hand feels as if it is asleep or tingly. I had a heart attack and bypasss surgery 3 years ago. My EF is 12%. Curtis S. cshanks@gec-isp.com


John Len's July 2 reply to Joe S' June 30, 1999 - Hi Joe, Was that fog or smog? Around my area when I drive over a bridge overlooking the bay and an 18 mile long bridge-tunnel combo, if I can see all the way to the other side, little smog but if the fog/smog is settling in, I can see less and less of the bridge-tunnel combination. John. a_lenny6@hotmail.com


Robin Lynn, July 2, 1999 - Hello to everyone on The Beat. I am new here but have been reading about all of you and decided this is where I need to be. I hope you don't mind if I share my story with you all since the only one in my life right now who knows what is happening to me is God. I am 35 years old in April, the mother of 2 beautiful girls: Julia, age 7 and Rachel, age 3. I was diagnosed with idiopathic cardiomyopathy (I believe from my own research to be dilated) in November of 1998 with an EF of 50. My cardiologist put me on 5mg monopril daily and 50mg atenolol a day. I had been diagnosed as having mild MVP 8 years ago during my first pregnancy and also with panic attacks. My heart rhythm problems seemed to calm down quite a bit until my second pregnancy in 1995. What a whopper that was! It never went away. My heart was so irregular I could barely function. I went to 2 internists and 3 cardiologists, who all confirmed I was too young to be having heart trouble. They sent me to the local mental health center to learn how to not be "cardiophobic" and to get over panic disorder.
     Well, I finally convinced my GP/geriatrics specialist that I had learned how not to panic, but I still felt something terribly wrong. Without the symptoms of panic, I was still having these episodes of what seemed to be hypertension heart disease triggered by an expolosion in my chest or a sword going all the way through me followed by days of arrhythmia and PVCs. He sent me to another cardiologist new to our area who listened just enough to decide to re-do an echo and stress test. He took me off the Inderal I had been on for the past 4 years and started me on atenolol. I could not make it physically through the stress test but the echo showed mitral, tricuspid and pulmonic valve regurgitation (moderate) and EF of 50%. Like I said, this was in November of 1998. Two weeks after the tests, my doc put me on 5mg monopril and said that it wasn't too bad. He really didn't tell me much; only that my muscle was weak. I was so happy to find out that I wasn't crazy, I went straight to mental health and closed my case.
     Well, it took me about a week to get on the Net to find out about this thing called cardiomyopathy, the night of Thanksgiving I found out that I wasn't so happy. I had one of the worse possible heart conditions one could have. I cried myself to sleep. The thing that I couldn't understand was that my mother and mother in law are both nurses and didn't say one word about how bad this could get and how quickly it can kill you. Now that I think about it, they both had the same reaction: "Oh" with a blank stare. Anyway, my doc bumped me up to 10mg monopril in January of 1999 because I was still having irregular heart rhythm, PACs, PVCs that are multifocal, trigeminy, bigeminy, couplets. In March of 1999, I had a severe episode that landed me in cardiac observation for 4 days. I had all my tests done again and my EF was 46%, down from 50 in November, and the adenosine stress test states many dysfunctions of the heart. My doc says he does not think that I have had any type of heart failure but my test results state that damage is consistent with profound MI! He then doubled my monopril to 20mg a day.
     I have been on a slow downhill slide in my energy and all the rest of it. I recently started cardiac rehab in hopes that I could start to feel good enough to at least play with my children again. It has been discovered that I have become orthostatic, with my blood pressure dropping to 70/60. So Friday, a week ago, he cut my meds in half. I feel like I have been re-born except for one thing; that awful heart rhythm is returning and I have a hard time dealing with it. It was easier to think of it as benign but now I know the dangers of increased chance of sudden death with DCM and arrhythmia. I pray that if anything happens to me, it won't happen when I'm home alone with my babies. My doc says he doesn't need to do the test again for another year or two. Something is wrong with that. I am currently in the market for a heart failure specialist, hopefully knowing something about cardiomyopathy.
     I have noticed that many of you are on Coreg. I'm wondering now why my doc isn't treating me more aggressively. Even if it is mild now, why take a chance of it getting worse? I want to ask Jon or anyone who has made it through my story if EF is the most significant factor or do symptoms like the arrhythmia I've described and valve problems play a role in diagnosing the severity of DCM? Thanks for this opportunity to share with all of you and most of all, thanks be to God for every day to come.
     "I once asked God for all things so that I could enjoy life, He gave me life so that I may enjoy all things," Author unknown. God bless and never stop praying. rperrett@bellsouth.net


Aunalee, July 2, 1999 - Hi, I just found this site. It is a blessing. I have had CHF for I guess 4 years, but was treated for asthma instead. On May 26, 1998, they finally diagnosed me with CHF. I had told them my heart had a problem for over 2 years but no one listened, including 4 doctors and UCLA Medical Center, the training hospital in Los Angeles, California. Anyway, my EF was 10% at diagnosis, went up to 18% after stabilization on meds. Then in October of 1998, I entered a study to get an ICD or Coreg. I got Coreg and 3 days later I was hospitalized with respiratory failure due to Coreg. I guess I cannot take that. After reading all the accolades about Coreg at this site, I'm rather disappointed that I'm not a candidate for it. I was in the hospital from the Coreg for a month, and on oxygen for 5 months. I still have residual respiratory problems that probably will not go away. This is very disappointing since I am 57 years old and raising 3 granddaughters ages 6, 8 and 10. Last summer I took the girls camping at 8000 feet and did fine. After the Coreg, I know I cannot do that this year. I am praying for next year.
     I have a major question I have not been able to find out anywhere. I realize it is subjective, but does anyone have an idea what the average life span or expected time one can expect to survive with the meds that destroy your kidneys and other problems inherent with this condition? Well, I've gone on long enough. Thanks for being here. I'm so glad I found this place. Aunalee. gmom@ridgenet.net


Tom S' July 2 reply to Helen O's July 1, 1999 - Hi, Congratulations on the SSI approval. I know it can be a real nail biter while you are waiting. I thought it rather strange that the amount of your benefit was tied in with live-in companions? Never was I asked to supply information concerning the incomes of anyone else in my home. I was under the impression awards were based on past "quarters" of employment and the amount of SSI tax paid. That may answer Brenda's question concerning applying for SSD. I believe that as long as you reported income and paid taxes on that income, you qualify for some level of Social Security Disability income. Like everything else, it can't hurt to ask. Just be sure to wear a good disguise and use a pay phone if all that money was "under the table." <g> biggerbhoy@hotmail.com


Rick M's July 2 reply to Danny's June 30, 1999 - Hi Danny, Sometimes life is tough, and you sound like you've hitting one of those rough patches. Staring at four walls is not good as you know, and when you don't feel that you have the energy for anything else it's even worse. I have found that establishing a routine for each day helps a lot. First you have to plan it, and that is one thing we CHFers have plenty of time to do. Then we have to execute the plan, and that is where we have to be smart enough to use what energy we have in the most productive way. Start with finding the closest library, getting a new card, etc. Try it out and let us know how it works. rearadml@iu.net


Jill S' July 2 reply to Lisa's June 30, 1999 - Hi, Lisa and Norma, The sudden onset of fatigue has happened to me on numerous occasions but once it turned out to be quite amusing. I was at the mall during the Christmas rush. I had parked and felt so good I ended up at the far end of the mall. All of a sudden, I felt very, very tired. I found the closest chair I could, which was in the cosmetic section. I perched up on one and rested. All of a sudden the "estheticians" (cosmetic sales ladies) swooped down on me and started massaging my neck and hands. The next thing you knew, I was given an entire "makeover" facial and makeup. Revived and glorified, I walked back to the car and went home. Now, I don't normally wear much makeup to my husband's chagrin, but when I walked in the door, I got whistles and catcalls from my husband and son. What a hoot! Try it sometime, it's great. Of course I ended up buying some products I could have lived without. Oh well. Jill, EF 28, age 47. jilschro@jsp.net


Lisa H, July 4, 1999 - Hi everybody, After a visit to the cardio office yesterday I have some questions. Has anybody ever taken amiodarone? What I find sounds like it could be nasty stuff. The doc wants me to take this for awhile and try cardioversion (again). Are there any success stories out there? Or any stories, at all? I just would like to know about this drug from a personal point of view. Thanks for any answers. Lisa. wthall53@aol.com


LeeAnn D's July 4 reply to Jill S' June 30, 1999 - Hi everyone, I just wanted to tell Jill that I enjoyed her story. I think I'll try that sometime! LeeAnn, age 38, EF 30 (wish that were reversed!). ddavis1057@aol.com


Hope M's July 4 reply to Curtis S' July 2, 1999 - Hi Curtis, I had open heart surgery to replace my mitral valve in 1994. I am also taking meds: Coumadin, digoxin, metoprolol, dyazide. Yes, I do get fuzzy spots in my vision, like I have a little area of film on my eyeball for a little while. I usually take off my glasses to see if they have a fingerprint! I have also experienced times when I feel tingling in my hands and forearms, and on my nose too, when it almost feels like ants are crawling around on my skin, but it eventually goes away. None of these things ever happened before my open heart surgery so, rightly or wrongly, I still blame them on the surgery! Hope. hlmcneil@earthlink.net


Hope M's July 4 reply to Norma's June 30, 1999 - Hi Norma, I also get those periods of intense, overwhelming fatigue that come on suddenly. I even went and talked to a counselor about the difficulty I have driving sometimes because of it. He wisely suggested that I just consider it part of who I am, and pull over and take a cat-nap for a while. Since I have a car phone, I can just call someone if I am supposed to be somewhere and tell them I need to rest a little but I'm still on my way. My kids have gotten pretty used to me saying, "I have just got to go lay down and nap for a little while." Hope. hlmcneil@earthlink.net


Hope M's July 4 reply to Cecil's June 30, 1999 - Hi Cecil, Regarding Coumadin and weight gain, I've been taking Coumadin since August of 1994 when I had my mitral valve replaced. I weigh 14 pounds less now than I did prior to surgery. So, for what it is worth, in my case it does not appear to have caused weight gain. Hope. hlmcneil@earthlink.net


Pat L's July 4 reply to Curtis S' July 2, 1999 - Hi Curtis, I had similiar visual disturbances and found out that my digitalis level was too high. That would be Lanoxin or digoxin. I had to cut the dose for awhile. Pat. patlat@yahoo.com


Joe S' July 4 reply to Lynn D' July 2, 1999 - Hi Lynn, As far as I know, we have no smog here. At least, I've never seen any and I was raised in the worst smog area of the world, San Gabriel, California. We also don't have air conditioners here because it rarely gets hot. So I guess I'll just have to move. I sort of like that idea. Thank you for your imput and help. One more big question for anyone: I went out of town on Tuesday and ate what I thought were low sodium meals, but became really sick Tuesday night in the motel room. How can one avoid this problem? I don't think it was anything they added to the food but what they cooked it in. Could the 200 mile drive have anything to do with it? Joe S. JES@StevensonLighting.com


Al M, July 5, 1999 - Hi, One of my docs was one of the investigators on a large Coumadin study. When I asked him about what I had been seeing regarding weight gain, he asked me, "Where in the world did you hear that?" He said he had neither heard nor read anything about weight gain with the use of Coumadin. He suggested calories, perhaps lack of exercise and maybe some beta-blocker action. Keep plugging along and be healthy. Al M. ajmiii@web-access.net


Tom S' July 5 reply to Curtis S' July 2, 1999 - Hi, Most of this group seems to have related experience with finger tingling and to a limited degree, some vision problems. As a relatively long time CHFer (over 4 years), I can attest to the fact I went through numbness and tingling of almost every extremity on my body. Whether it is associated with the CHF condition or a side effect of getting adjusted to new medicines, I really don't know. I do know that it ultimately stopped completely except for a occasional bout of dizziness which my doctor doesn't seem too concerned about. I also had some rather wierd, almost pyschodelic, jagged patterns, which started small and grew in size and fluctuated from black to white. My doctor did tell me they were actually &Quot;migraine eye aches" and are really nothing to worry about and that in fact he had them, too.
     Until very recently I was on pretty stiff doses of Coumadin, Coreg, Lasix, Lanoxin, K-Dur (potassium), and Lotensin. During the past few years of coping with CHF and the terminally ill tag, I have learned that part of the coping mechanism is not to get too excited about every little twitch, pain or other physical anomaly. Usually they are transient and a result of hypersensitivy caused by a newfound awareness of the value of life. biggerbhoy@hotmail.com


Jon, July 5, 1999 - Hi, Page updates are very hard to make right now since Yahoo has destroyed geocities' FTP service, which is the most effective way to upload my files. Hang in there, maybe they'll get it fixed. If not, this old dog will just have to learn new tricks.
     To all who use AOL, please be aware that a very high percentage of AOL addresses return mail to me with fatal errors, so much so that my mailings are getting to be more work than I am able to do. Apparently, some other people are also having trouble getting mail to you guys because of AOL's poor mail performance. Something to think about - you may not be getting a lot of the mail that is aimed your way. Jon.


Lori P, July 5, 1999 - Hi, Well, I received my letter from Social Security today denying my claim for disability. Has anyone else in Missouri fought for it? I will begin my appeal process, but could sure use some advice. Thank you very much. lpearson@cdsinet.net


Leland Yee, July 5, 1999 - Hi, Greetings to all, I got my 4 month checkup yesterday with my cardio doc. Good news: my next MUGA and echocardiogram will be scheduled for this month. He also cleared me for traveling. My son lives in Reno and because of the distance and altitude, I have hesitated traveling. My MD said that I should try anything I want and if my body will not accept the conditions, then learn your limitations, because I will not know until I try it. He is also pleased that I can walk about a mile a day. He also pressed the issue that Coreg should be considered as an addition to my drug regimen. Beta-blockers have always been my nemesis since 1979, beginning with propanol, nadalol and atenolol. I really fear Coreg. He wanted to see if I could try 3.125mg per day for a month. Beta-blockers started me on the road to polymyalgia Rheumatic (serious case) but he says try it. I am also going out for dinner a little bit more now. The Chinese restaurant which Lily and I frequent a lot has offered to cook all my dishes with little or no sodium, including MSG. We have also frequented Japanese food, Sizzler's (trout dinner), other eateries which serve broiled halibut, trout, orange roughy, etc. It's great to get a different taste. So, for anyone new to Jon's Forum, have heart, keep a up-tempo outlook and trust in the Lord. Leland, EF 16%, idiopathic DCM. LLYEE@surfside.net


Brenda H, July 5, 1999 - Hi all, Norma, I also have those periods of complete exhaustion. It really stinks, especially if I over do it one or two days, then I'm really wiped out. What did Jon call it - an energy hangover? (Jon's note: fatigue hangover) It's easy for me to do with a 10 month old! Pat, I want to thank you for your info on Coreg. Even though I'm only on the lowest dose, I hope to increase it eventually if my BP will take it. I know I need it. My heart rate is in the high 80-90s. I wish I was like LeeAnn, in the 60s. :-) Everyone have a great Independence Day weekend! Brenda. Brendakay@wa.freei.net


Leland Yee, July 5, 1999 - Hi Tom and Doug, You seem to be on having a bad time with weight problems while using or not using warfarin. Perhaps one of the reasons for weight differences is that warfarin is metabolized in the liver. Perhaps this interferes with some of the foods we eat which are also metabolized in the liver and which interfers with hepatic functions, such as digestion of fats. For some of us, this could cause either a weight gain or loss. Other adverse reactions of warfarin include nausea, diarrhea, vomiting, intestinal obstruction and cramping; lots of abdominal effects. None of the effects are serious enough for most of us CHFers to stop use (except for a few, like Tom). I have been on warfarin since my CHF onset in March of 1999. I am on 1.25mg 3 days a week and 2.5mg 4 days a week with no change in weight (lucky me). Good luck to you guys. Leland, EF 16%. LLYEE@surfside.net


Brenda H, July 5, 1999 - Hi, A big welcome to all the newcomers! The biggest help to me at diagnosis was this computer, you great people, and prayer, so keep it up! Another quick question about SS: Can anyone tell me the difference between SSI and SSD. I heard if you can't get one, you could qualify for the other but you have to be really low income? Thanks again. Brenda. Brendakay@wa.freei.net


Joe S' July 5 reply to Curtis S' July 2, 1999 - Hi, This post is really for everyone. Many of you have only recently been diagnosed with CHF or similar problems; recent meaning withing the last 2 decades. Maybe some of my experiences might help. I contracted Scarlet Fever when I was five (55 years ago) and was diagnosed with a very serious heart murmer. The scores of doctors gave me a list a mile long of what I could not do: running, sports, swimming, etc, and for the next 10 years or so I followed these instructions to a tee, mostly because of a strict mother. Well, when I was 18 I got a job at Pepsi Cola to pay for college, doing fairly hard labor. I placed empties on a conveyor built at the rate of 16 per minute. The best part though, was that I worked hard for half an hour and sat down for the next half an hour.
     Later on in the summer and the next 3 years, they increased my work until at the end I was stacking 55lb cases sometimes at the rate of over 30 per minute. I even went back to doing this for 3 months in 1972 and had no problems. The end result of all this is that all symptons of any heart problems totally disappeared for over 20 years. Every doctor I saw said I was in excellent health but over the next decade or so, I let down my guard and began eating totally wrong and stopped exercising.
     It all caught up with me again last summer due to going on that stupid Dr. Atkins' low carbohydrate diet, which cuts carbs but triples sodium. About a year ago I nearly died, couldn't breathe even sitting down. The doctors finally diagnosed it correctly as CHF and major edema and gave me a diuretic. I now feel very good again. My main point here is don't ever let anyone ever tell you not to exercise, which they did again last summer, and don't ever stop watching what you eat. It isn't just sodium but almost all chemicals they put in processed food. I think it is poison to everyone, not just us, but that's another saga. I hope this helps. Joe S. JES@StevensonLighting.com


John Len's July 5 reply to Joe S' July 4, 1999 - Hi Joe, If the sick was as in diarrhea, it was probably food poisoning. John. a_lenny6@hotmail.com


Diane T's July 5 reply to Lisa's June 30, 1999 - Hi, It also seems like just out of the blue, I feel so extremely tired that if I don't go and lay down or at least sit down, I will just fall over. I have never posted before, but very often read the other messages. I had 2 valves replaced back in 1975 as a result of rheumatic fever as a child, my mitral and aortic valves. Everything went fine for about 11 years. I was 31 at the time. Then after 11 years, I began to have bouts of atrial fibrillation. Most of the time I ended up having to be shocked back into sinus rhythm. Sometimes it would be 3 to 4 times a year. Anyway, at the end of 1997 I thought I was just putting on weight but I was really retaining fluid and I ended up in heart failure due to my aortic valve leaking again after almost 23 years. I also had an MI in 1995 due to a blood clot forming at my mitral valve. January 22, 1998, I had to have my mechanical aortic valve replaced again; this time with a homo-graft (human valve). I spent 40 days in the hospital, flat-lining on them twice. I didn't think I would ever recover. I finally went back to work in May of 1998.
     I was so blessed by God. I worked at a good company I worked with 13 years, and they provided Disability and then let me set my own hours working just 4-6 hours a day, depending on how I feel. I am maintained on Coumadin, quinidine, Lanoxin, verapamil, captopril, Lasix and furosemide. Some days I have to double my Lasix. The replacement valve also leaks and at some point in time the doctors feel it will again have to be replaced. My EF last May was 44% but I've been having a few problems and was in the hospital a couple of times in June of 1999, and my EF has improved to 51%. I have been having some kind of spells where my heart feels as though it is slowing down and I almost feel like I will faint but by the time I get to the hospital, they are over with. I am now wearing a heart monitor to see if they can capture what's happening.
     I just wanted to thank you for and everyone on this site for your care and concern for all. It has really inspired me so many times. God bless all of you and keep up the good work. I think these spells might be caused by some of my medicines. My normal resting rate is 54. When I am up and around, it gets up around 60-65. Well, I've gone on long enough. LDCT12@aol.com


Doug K, July 6, 1999 - Hi Ruth and Hope, I guess I have just been eating too much and exercising too little. Reading the posts concerning the Coumadin/weight gain seem to indicate a mix of some who have gained weight, and some who haven't. I know in my case, I haven't been watching my food intake as well as I used to. Thanks to all who shared their experience with Coumadin. dgknuth@earthlink.net


Robin Lynn, July 6, 1999 - Hello to everyone, I posted here a few days ago and am genuinely moved by the responses I have gotten. What a blessing! I thank you every one for your knowledge, support, encouragement, and most of all your friendship that I need so much in my life now. I have found my place at Jon's Place. God bless. Robin Lynn. rperrett@bellsouth.net


Ben B's July 6 reply to Robin Lynn's July 2, 1999 - Hi, Have you been seen by an electrophysiologist? It seems like your main problems are with your valves and arrhythmia. Maybe you just need a good EP study to allay some of your fears about sudden death (although we can never be sure). I have had all the same PVC, PAC problems as you for 10 years, and didn't really calm down until I saw a good EP doctor. I wouldn't consider an EF reading of 46% to be down from 50%. They can't really measure it this close with an echo. As you know, most people around here would be ecstatic with this kind of EF, but that doesn't mean you don't have a heart problem. Atenolol is a beta-blocker, and so is Coreg. They use beta-blockers as partial treatment for some arrythmias, but they may not want to give you both. bdbrinkman@juno.com


Jana B, July 6, 1999 - Hi, I'm home! The bad news is that my left side was affected and my left foot is pretty useless. The good news is my EF went up from 21% to 30%. God is good! Jana. JByers4u@aol.com


Doris R's July 6 reply to Aunalee's July 2, 1999 - Dear Aunalee, Don't think about a cut-off date. Think about recovery. What are we, if not our thoughts? Even the most sophisticated machine started out a thought, an idea. Why, our doctors had to at least first think they wanted to go into medicine before becoming physicians. Thoughts are powerful, they make us or break us. Thank God we can change our minds! Deal with it, cope, even when you are tired, endure. Pray. 1st Thessalonians 5:17 says, "Pray incessantly." It helps. Mark 11:24 says, "This is why I tell you, all the things you pray and ask for, have faith you have practically received and you will have them." Pray for recovery or at least to endure beyond all the doctor's expectations. Romans 8:32 says, "He who did not even spare his own Son but delivered him up for us all, why will he not also with him kindly give us all other things?" I am 47, I have 2 daughters, one 27 and one who made 4 years old this June (my menopause baby). I was diagnosed August of 1998 and my EF was 10%. I was a candidate for heart transplant. It was implied I'd die waiting for that transplant.
     After 6 months at the full dose of Coreg, my EF is 30% and I am no longer considered a candidate for transplant. If God would give us "all" other things, then I pray to get "all" better. I could get worse but I want to, and expect to, get better. So, that's what I think about. It sure doesn't hurt. In fact, it takes less energy to think a positive thought than a negative. Save your energy for your girls. Prayer is a powerful tool and a precious provision. Do you think the President would give you attention, would he give you an ear if you wanted to talk to him? But God listens! Have faith, I shall pray for you. I believe so shall all of us here. It will be like the waves of the ocean that God receives petitions on your behalf, I mean one right after the other. Believe and receive it. Endure! I love you madly. Doris. RoughGoing@aol.com


Tom S' July 6 reply to Brenda H's July 5, 1999 - Hi, There are those who believe doctors are infallible and those that have some sense of reality when it comes to dealing with that particular professional group. I have heard "Where on earth have you heard that before?" from more than one doctor, only to find out the doctor didn't have a clue about the actual facts. The truth generally lies somewhere in the middle. At one time, I worked as a surgical technician, elbow to elbow with some of the finest surgeons in upstate New York and I remember very clearly the many times they would take a "best guess" during surgical procedure. Doctors often bury their mistakes.
     SSI stands for Supplemental Security Income better known as Social Security, and SSD is Social Security Disability. The Social Security Administration has the dubious honor of administering both programs. Social Security was never meant to be the only source of income for retirees. It was intended to be a supplement to regular retirement income, which the majority of Americans can no longer rely on. SSI usually is only paid out to retirees while SSD is paid out to persons of all age groups who have worked a specific number of quarters and also is based on the number of minor children the disabled person has. Biggerbhoy@hotmail.com
 
Jon's Note: See www.ssa.gov/d&s1.htm and www.ssa.gov/pubs/10029.html.


Cecil's July 6 reply to Leland Yee's July 5, 1999 - Hi Leland, About your trip, I just returned from a 4,000 mile trip in which I drove through the West, Sawtooth Mountains, Sierras and Cascades. My last EF was 16. I didn't feel too well when I left but as I traveled, I seemed to gain strength each day. Now that I'm home it is hard to get motivated some days to go and do much of anything. I don't know what your reaction would be but I would definitely recommend that you take the trip. Have a great time and see your son. Tahoe is beautiful! Cecil3744@aol.com


Cecil's July 6 reply to Lisa H's July 4, 1999 - Hi Lisa, I've been taking amiodarone on and off for the past 2 years. You're right, it is a nasty drug and the warning sheet that comes with it is very scary, especially if you take Coumadin. Amiodarone also thins your blood so the PT blood tests become very important. My doctor however, says it is the nuclear bomb as far as clearing up AF. Unfortunately, it has not worked to clear up my last episode nor did a cardioversion. However, the Cleveland Clinic in a recent report in their heart letter stated that it had helped about 60+% of patients recover from AF. I don't know what your financial situation is but it is also a very expensive drug. I requested an indigent patient form from my doctor and they obtain my amiodarone from the drug manufacturer and give it to me. Maybe your doctor can do the same for you. Good luck, don't be paranoid but watch closely for the negative side effects and report them to your doctor immediately. Cecil3744@aol.com


Jack's July 6 reply to Jon's July 5, 1999 - Yo Jon, AOL makes sure that all the commercials get through. After all they get paid for those and e-mail is free, right? You guys search for the free ISPs in your area and dump those beasts that charge you. I've got 4 free ISPs and one that I paid for. I'm sure there are some in your area too and they don't choke you to death with ads like AOL. The Geocites FTP thing; One of my sites still works with FTP but I had to dump 3 other ones and move them to Tripod. maddjak@hotmail.com


Aunalee, July 6, 1999 - Hi, I found this site last week and received a couple of very nice responses. Thanks again. I have a question that I hope someone can answer. I have a distended stomach. Whenever I eat or drink any liquid, I feel as if I cannot get enough air into my lungs. I think it might be accumulated water but I cannot seem to get rid of it. I've cut my fluid intake back to about 40 ounces a day and my Lasix is at 40mg in the AM and 20mg in the PM. I went to a new cardio doc last Wednesday and mentioned it to him, but I did not even get a reaction. Then, again, I didn't get my prescription for Lasix that I asked for either. Sooooo. I'm still looking for another better cardio specialist. I think I'm going to try Loma Linda, since it's only 130 miles away. Thanks for any feedback you might have. Aunalee. gmom@ridgenet.net


Jon's July 6 reply to Aunalee's July 6, 1999 - Hi Aunalee, Sometimes when our livers swell, we get that exact same feeling. That's not always the cause but it can make you feel like you swallowed a basketball and that there is no room left for your lungs in there anymore. Your heart doctor should be manually checking your liver size with his hands during every examination. The liver, when swollen, can easily be felt just under the bottom of the right-side rib cage. A swollen liver actually pushes on the stomach so that a distended stomach and inability to draw a deep breath make sense. You may need an IV diuretic session to start removing that fluid since your abdominal lining may be swollen and that's where oral diuretics get absorbed. That same feeling can be caused by other things though, such as a drastically reduced cardiac output, so get it checked out by a doc who cares as soon as possible. Jon.


Lisa, July 7, 1999 - Hi, I just wanted to say hello and report that I just had a heart transplant. I only waited about 3 weeks for it because of my blood type. I was very lucky. I am 32 and have 2 small children at home and am expecting a puppy in August thanks to Jon's thought on that one, and considering no more cats or birds ever after a transplant. I am still in the hospital as of now, recovering rather surprisingly quickly, if anyone feels like e-mailing me. Just one thing though, I feel like I have really gotten a gift - my new 18 year old heart. Lisa, age 32, New York City. Goldylcks7@aol.com


Bob's July 7 reply to Lisa's July 4, 1999 - Hi, I am a CHF paitent with an EF of 19 and class 1 to class 2 symptoms. I am also being treated for hyperthyroidism at the present time. The endocrinologist treating me claims that this is a amiodarone-induced condition. I took the drug for approximately 8 months for unsustained episodes of V-tach that no longer appear to be present. I've been off amiodarone for close to a year and my hyperthyroid condition appeared about 6 months ago. RXB0@nreca.org


Linda O, July 7, 1999 - Hi all, Ruthie A, I can't find your e-mail address so I will try to reach you on the forum. I sure hate it that your plate is so full right now. It sounds like all the moves and the stress is too much. I hope you are keeping cool and you can rest. I always feel guilty when my husband has to do so much for me and yet I would turn around and do twice more for him. Please know that my prayers are with you. I learned last week that my valve is leaking more and my prinivil was upped. I didn't even know a valve was involved in this mess. She forgets to tell me things and I think she thinks she is being kind. Surprises aren't always fun. Hang in there, Ruthie. Linda O. Norvalo@clarinda.heartland.net


Phyllis A, July 7, 1999 - Dear Ruthie A, Hang in there, God will give you strength and I will continue to pray for you and us all. Phyllis A. phylcasurv@msn.com


Cindy, July 7, 1999 - Hi everyone, May I relay the positive experience that I had at the Social Security office yesterday? I waited until school was out to apply because I had been sub-teaching in order to earn enough points to be eligible to apply for SSD. I loved the teaching but physically it wiped me out, and there were many moments where I became disoriented, dizzy or just so fatigued I thought I would collapse.
     Well first off, the SS lady told me that I was eligible to apply back in April of this year and that the 6 month grace period would begin as of April. She said the application would take 60-90 days to be processed, that I may or may not hear from them until that time frame was over, and could she have a checking acccount number so they could direct deposit my check? Since my work history is spotty between having children and working part-time while earning my Master's degree, I was expecting a very small check. I was totally bowled over when she calculated that I would be eligible for $669 per month, including the small benefits for my 2 children. I live in Illinois and from reading posts here, I've realized that nothing is "typical" of the Social Security experience. I don't want to get too excited but the prospect of taking some of the financial burden off my poor, tired husband has me thrilled me to pieces. Now I just need to settle down and keep in mind that mine, like most everyone's application, will be rejected and there will be lots of back-and-forth before this whole thing is settled, or could I get lucky? Best always, Cindy. cleighmc@aol.com


Victoria F, July 8, 1999 - Hello Jon and the rest of the gang here, I was recently diagnosed with dilated cardiomyopathy. It progressed from CM to DCM, which started 6 years ago. My father also has DCM, along with a sister who was just diagnosed with DCM. The doctors finally believe now that our family is genetically predisposed to this terrible disease and have strongly suggested that my other sisters and brother, and our children be tested for it. The shame of it all for me was being uninformed as a patient. After 6 months of heart meds, I let the cardiologist tell me that it was a one time incident and that I would be okay. He took another echo and said that I got most of my heart function back and I would be fine.
     Because I was uninformed (believe me, I am educated concerning this disease now!) I may have signed my own death warrant. People, please ask questions and if you don't get the right answers go elsewhere until you do! The doctor detected a very distinct heart murmur last week so tomorrow I am having another echo done and possibly more tests because that symptom, combined with my other symptoms, may point to valve problems also. I am sorry for the long post from a first-timer but I just had to vent as I have really been stressed out lately! I am grateful that I know my Lord and Saviour as I couldn't get through the uncertainty of this disease process without him! Jon, your web site is great and I wish that I had all that valuable information 6 years ago when all of this started to unfold. Thanks. Take care and God bless. BootsIM@aol.com


Margie F, July 8, 1999 - Hi everyone, How's everyone doing in the east with this heat wave? I've been holed up in the house with a headache. I've spent 10 years battling them with some success, but something new always comes along to start them again. Has anyone else had headaches with Coumadin? When I first started with warfarin, I had headaches but after about a month and half they slacked off. Then my doctor wrote on the prescription that no substitutes, only Coumadin. Now my headaches have started again. I've tried cold cloths and darkness, and I can take Darvocet for the headaches but sometimes that doen't help too much. I'm a little leary of taking more meds continuously. Well wishes to all. Margie F, EF 20, HCM, CHF, AICD, age 53. MFisher238@aol.com


Robin Lynn's July 8 reply to Ben B's July 6, 1999 - Hello Ben and all, Sometimes after I read the posts here, I feel kind of silly being worried about my EF of 46%. I know most of you would jump for joy. You hit the nail on the head; I have been trying to find out about my freaked out heart rhythm for a long time now. Cardiomyopathy was found trying to find the other. I do have energy problems, edema, fatigue and other things I used to think was me just gettin lazy. The heart problem does affect my life style. I honestly don't know how all of you with EFs so low make it. It has got to be God and your faith in Him. Keep it up! You are all winners in my book. :-) I have an appointment with a heart failure center in New Orleans on Monday. From the way the nurse talked on the phone, I think I will be having a EP study done. God is surely working in my life and I can't wait to see what he has in store for me. Thanks to all of you. I had never even heard of an electrophysiologist until I came here. I believe that maybe the constant irregularity of my heart is what has damaged it. I'm on my way to finding out! God bless all and keep praying. Robin Lynn. rperrett@bellsouth.net


Bobby F's July 8 reply to John B's July 1, 1999 - Hi, I truly enjoyed your interesting post. You didn't however, disclose the experimental drug you were taking on the Smith Kline Beecham experimental program. Can you disclose it or are you unable to at this point? I know that it is still in the experimental point but it sure sounds interesting. Also congratulations to Lisa on her new gift of life! lfwcor@washingtonnc.com


LeeAnn D's July 8 reply to Lisa's July 7, 1999 - Hi everyone, Congratulations Lisa! I think its great you only waited 3 weeks - no time to dwell on it. Anyway, with the great new anti-rejection drugs and transplant care, I hope you live a long happy life.
     Cindy, keep hoping. I had a lady who was very sympathetic when I applied for SSD and I breezed through. I think I'm atypical but I'm not complaining. LeeAnn in Phoenix, age 38, EF 30 (I love putting that down - I was under 15 for sooo long). ddavis1057@aol.com


Cloyd P, July 8, 1999 - Hi, Is anyone experiencing the following? I have been diagnosed with an enlarged heart after a right catherization involving the use of a dye introduced into my veins. I got a hot feeling all over as a result of the dye. Now 3 months after this procedure, I sometimes get that exact feeling but only in my head. This feeling is accompanied by a dizziness and a feeling of wanting to faint. This only lasts about 3 to 5 seconds but may occur 2 to 3 times a day. This feeling can occur at any time and is not dependent on my activities. My doctor said that he could find nothing to explain my complaint but he was sure it had nothing to do with my heart condition. If anyone out there has experienced, this please e-mail me. Maybe this is a symptom of another disease? I include the medicines I'm taking. Is anyone experiencing side effects from these medicines consistant with these symptoms?
     K-Dur, Isosorbide Mononitrate, Coumadin, digoxin, Zestril, Hydralazine, furosemide (generic Lasix). Is it possible that some generic medications do not work as well as the original? P-C-Perry@webtv.net


Will W's July 8 reply to Lisa's July 7, 1999 - Hi Lisa, Congratulations on your new heart, the gift of life. You are now one of the gang! I have had my heart just over 2 1/2 years. We had our Heart Transplant Support Group meeting today and met a young man who is working with a group called "National Transplant Action Committee." Their aim is to help in getting all phases of transplant medicine much easier to help those who need it. The name and address of the Executive Secretary is: David L. Roher, 1750 SW Skyline Blvd. Number 103, Portland, Oregon, 97221. The phone number is (503) 203-8812 and the fax number is (503) 203-8815. Their e-mail address is ntac@teleport.com. Anyone desiring to receive more information can contact him at these addresses and numbers. Congratulations again, Lisa. E-mail me if you would like to exchange information. Will W. heart266@tco.net


Carol W, July 8, 1999 - Hello to everyone, I have just started to read the posts on this site and have a question to ask. I have had CHF for more than 3 years. I take Atenolol, Norvasc, prinivil and a diuretic for my heart. When I read Aunalee's post of 7/2, she said that some CHF "drugs that destroy your kidneys." Which are these drugs? I haven't heard this before. This idea is as scary as CHF. Thank you to anyone who has this information. I go to see my cardiologist in a few weeks and I would like to take this info with me. cabwojo@banet.net


Lisa M, July 9, 1999 - Hi, I am posting to let you know I had my first biopsy today after the new heart transplant and was disappointed with an answer of rejection to the new heart being rejected by my body. It is very common and can be adjusted with a fine tuning of drugs but the 18 year old heart is very strong and beating well. I thank his family every day in my prayers for the special gift they have given me; their son's heart, what a precious gift! So as not to confuse any of you, I am getting a dog because I had to get rid of all my cats. You can't have cats or birds indoors or out after transplant, nor grapefruit juice ever. Weird, huh? Lisa, age 32. goldylcks7@aol.com


Robin W, July 9, 1999 - Hello to everyone, This is Robin's husband. Robin had her heart transplant on Sunday, July 4th. She is still in intensive care but will hopefully be out in a couple of days. She has not posted in awhile as she was very ill the week prior to her transplant. She had an infection throughout her blood, which had started in her cath. She had to have the infected cath removed with a new one being inserted on July 1st. It looks like the problem got solved just in time. I'm sure she'll be back online soon to share all the details. Thanks to everyone's kind e-mails and letters. jwilson@nb.com


Donna B, July 9, 1999 - Hi, I was diagnosed last year with CHF. I have been seeing the same doctor and have never had a second opinion. A couple of months ago, I went to see another doctor for a second opinion. He needs the test results from the first doctor. It has been about 2 months now and my first doctor will not send him the info. I have called the office several times but get the brush off each time. I had all these tests done for the second time in April and since I have to pay 20% on all these tests, which are very expensive, I really don't want to have them done again. This is a real mess. Everyone tells me they are my records and I am entitled to them but so far I have been unable to get them. Does anyone have any ideas about what I need to do? I would appreciate any input on this. By the way, this is a great site. I visit often and thank you all for all the sharing of info and support. God bless you all. Ghentgal@pilot.infi.net


Staci H's July 9 reply to Cloyd P's July 8, 1999 - Hi everyone, Cloyd, I didn't have the exact experience that you did with the heart cath, but I had something happen that really scared me. When I was feeling the warmth of the dye going through my head, there was pressure and a snap, crackle, pop when it got to my right temporal area. I would like to know if that is normal. If not, what caused it? God bless each and everyone of you. quirki98@aol.com


Lee R's July 9 reply to Cloyd P's July 8, 1999 - Hi Cloyd, I read your post and have a question: do you feel any arrhythmias in your chest when you get that fainting feeling? It may have something to do with your heart and perhaps holter monitor testing might be worth a try. We're pulling for you. Lee. LeeRoush@aol.com


Jon, July 9, 1999 - Hi everyone, This is just to apologize to all for the page problems; please hang in there. Many times in the past week, I can't even get my own pages to load. I never thought I'd long for geocities' staff back, but,.... Jon.


Lynn D's July 10 reply to Donna B's July 9, 1999 - Hi Donna, I have had a bit of the same problem with another kind of doc long ago. I finally called, gave them 2-3 days to get the records together and told them the date and time I'd be there to pick them up. They were rude and demanded to know the address and name of the doc I was taking them to. Since these were MRI films, I ripped the old doc's name off the folder so they would never be sent back accidentally and put my name and address on the outside. You will have to sign a release but you should be able to walk out with your entire folder. Smile, be polite but firm. If they try to make you wait, tell them no. Ask to see the office manager. I hope this helps. lynndaniel@mindspring.com


Adam ?, July 10, 1999 - Hi, I am also a person suffering from congestive heart failure. I had my first surgery when I was 5 months old for transposition of the vessels. Everything went perfect for the next 23 years. Then I noticed I started to become very short of breath and had to cut a lot of my activities short. Today I am on the transplant list for a heart and double lung transplant. If anybody has any questions or just wants to talk, I can be reached at rusty69@gateway.net


Joe S' July 11 reply to Cloyd P's July 8, 1999 - Hi Cloyd, This is just a thought but I know sometimes I tie everything I feel with my heart and many times, it's just a flu bug or something. Last Tuesday and Wednesday I felt as lightheaded and dizzy as I ever have but last night at my grandaughter's birthday party, all the normal people there said they've felt the same way because of a flu bug. Sometimes I guess I'm paranoid. Actually I think I am, probably like all of us are, really scared to death about our conditions. After all it is terminal, but so is life itself. JES@StevensonLighting.com


Carolyn H's July 11 reply to Donna B's July 9, 1999 - Hi Donna, You are legally entitled to have your medical records sent to your current doctor. You should write the previous doctor and request in the following manner: Please send a copy of my medical records, chart and file, to (the name of the new doctor). I sent a request to a doctor via U.S. Certified Mail with return receipt requested. I had no problem getting my records sent. I would also specifically request the results of all the tests you have had be sent to this doctor. crhughes@greenepa.net


Linda O's July 11 reply to Donna B's July 9, 1999 - Hi, My husband went to the dentist and got his second injection to deaden the gums. He felt his heart stop and he sat up in the chair because he couldn't breathe. It was ok in a second so he didn't say a word about it. A year later, he had a plugged artery and stent put in. I told the dentist and he was very glad to know.They don't really want to be sued and pay a bigger malpractice premium. I think our medical records are about us but sometimes the staff that copies the info are a little slow. I think you should try your local Medical Society and then your state attorney general or the state Medical society. They do not like bad publicity and the doctor's office should move on it. I wonder if your personal insurance company would stand for a second set of tests in such short period of time? Would they have any clout with the doctor's office? Linda O. norvalo@clarinda.heartland.net


Cindy's July 11 reply to Donna B's July 9, 1999 - Hi Donna, In regard to the waiting game your doctor is making you play, there is no excuse for them to take 2 months without producing your medical records. I was in a similar situation, and I finally just walked into the doctor's office explaining that I had a legal right to my records and would not leave until they produced them. They started alluding to "policy" and I kept repeating that the law allowed me to view my records and make copies of them. I was willing to cause a scene by informing other patients of what was going on, and I was willing to cause enough of a stir that I might have had to be physically ejected. Of course, that would have entailed bringing the police into it, something that the doctor's office probably wouldn't have wanted, given that they were in the wrong. It never came to that. Just my going to the office in person and stating my rights produced the desired results. If this is too bold of an approach for you, maybe a friend or relative could accompany you and advocate for your right to your medical records. Best of luck! Cindy. cleighmc@aol.com


Lori P, July 11, 1999 - Hi, I have a question: Is the normal INR number supposed to be different for each individual? Does it depend on your own cirumstances, or is there a set number? My cardiologist said that my numbers should read between 3.0 and 4.5. I'm just curious. Thanks! lpearson@cdsinet.net


Angie H, July 11, 1999 - Hi everyone, It has been a while since I posted but I have been reading the ones who have been posting. I have been feeling somewhat better lately until the past couple of weeks. I have had a few syncope episodes and now almost everytime I eat, I feel very bloated and my abdomen gets very distended. Also, I wake up every day nauseated. I am fairly new to CHF/DCM. I was diagnosed in March of this year. Even though I watch my sodium intake, I have sporadic episodes of fluid retention that get really bad. I have just recently changed doctors and I am going to one in Chapel Hill, North Carolina whom I really like. It is a 2 hour drive for me but I feel it is worth it. I push myself too hard sometimes because I am the mother of 3 sons. I get very little support from my husband because I think he does not understand how serious this is or else he is in denial. When I push myself really hard, I pay for it about the next 3 days. I am working but I'm finding more and more that it is getting harder to keep up. I work as a nurse's assistant in a state mental hospital. The unit I work on is a long term geriatric unit and somedays I can barely take care of me, much less others. I do a lot of lifting which is getting more difficult. My EF is 47%. Should I be having all these problems with an EF that high? Well, I'm sorry to ramble on but it does the soul good to vent sometimes. Take care everyone and if you have any feedback, please e-mail me. God bless you all. GABAT3@aol.com


Donna Finney, July 11, 1999 - Hi ya'll, We're doing fine here, just waiting for the doctor to write that letter for our SSD. I was wondering if anyone has used the firm - Occudata - to help with the process of collecting SSD. We have paperwork from their office to help us with the process, but I have never heard about them before. Attorneys in our hometown won't help us until we are on our third appeal. If anyone has done business with Occudata, please e-mail me. Thanks. Donna. Gizmoe42@aol.com


Crystal S, July 11, 1999 - Hi, I am a 27 year old woman with Congenital Dilated Cardiomyopathy. I also have a nearly 4 year old son who was born with it and was transplanted at 13 months old. I have been so into his care that I have neglected mine. I am on quite a cocktail of meds now and am also involved in a clinical study involving the drug Diovan, an ACE 2 inhibitor. I take Zestril, Digoxin, Atenolol and Lasix. I live in Phoenix, Arizona and am having a hard time trying to survive this heat. I have bruises all over my body and never know how I get them. I have to go to my doctor in order to get IV fluids due to my levels either being toxic or subtherapeutic and this is being blamed on the heat. I am a young woman who should be able to at least function daily but seem to be having more trouble than ever this summer. I am one of those people who refuse to blame anything on my heart because I simply won't make excuses for myself. So here I am on the Net trying to be my own advocate for once and find some answers and or solutions. Any advice would be greatly appreciated at this time. Congratulations to those who just had transplants. Luck is on your side, being fortunate enough to have received your new heart. Not a day goes by where my son and I don't thank our donor family. God bless the little girl who now lives on within my son. Thanks. Crystal. CSharp@aol.com


Aunalee's July 11 reply to Jon's July 6, 1999 - Hi Jon, I did not see your reply before. I was wondering where the thing about the liver came from and now I know. Thank you so much for the info. I am seeing the doctor again Wednesday and I will throw that by him. I really need to get this stuff out of me. Besides being very uncomfortable, it's not good on my heart. Therefore I'm going to find out, whether he likes it or not. Anyway, thanks a bunch and I'll let you know what comes from it. Support groups are really powerful tools, aren't they? It seems unbelieveable that we can each go to a place and tell everyone else how we feel and feel instant acceptance and wonderful strokes from the feedback. Thanks for this site! God bless. Aunalee. gmom@ridgenet.net


Bobby F's July 11 reply to Jill S' July 2, 1999 - Hi Jill, I loved that story. It sounded just like my sister Linda and some of her escapades. Take care. Bobby F, EF 24. lfwcor@washingtonnc.com


Kathleen M's July 11 reply to Cloyd P's July 8, 1999 - Hi, I have been reading this board for several months and only now respond, as I have had some similar experiences like you have had. Prior to being diagnosed with DCM last October, I had many episodes of feeling a wave of electricity, noise, or something that would move though my head. Often this occurred in the evening and would occur over and over again when I first went to bed. It was diagnosed as migraine precursor. Interestingly enough, when I went on medications for my heart condition, this head "noise" slowed down a lot. I now experience it only once a week or so. I believe that it is either related to my brain being saturated with fluid or lack of oxygen to my brain. However it hasn't been anything more than annoying and weird. My cardiologist does not think it is related to my heart but I wonder. I have a 20% EF and am on 50mg Coreg, 10mg potassium, 50mg Losartan, and 60mg of Lasix. Other than that, I am in really great health as everything else but my heart is normal. kavern@juno.com


Jack's July 11 reply to Donna B's July 9, 1999 - Hi, I have copies of my paper medical records and it has taken a long time to get them right because each time I was always missing a few. The first thing you have to do is get a record of the dates of each visit and procedure. That's simple because it is in the computer. Then you get the records and cross reference them with the dates you already have to see if any are missing. If there are some missing, then you can go "get in their face." The first time around, I was missing a report on some x-ray films so I hounded them for the report. The report had the correct title and there was nothing reported but 2 doctors had signed it stating that they agreed with the findings indicated in the report. It took 3 times before I got an actual report. I also have my x-rays and MRI film at my home. My doctor either lost or threw away the MRI films but they had backups on the computer. I carry the stuff with me and if they want to make copies for their use, they can. But the stuff stays with me! If you don't think you can keep track of them, give them to someone who can so you can access them when you want them. maddjak@hotmail.com


Jack's July 11 reply to Joe S' July 5, 1999 - Hey Joe, Low carbohydrate diets don't triple sodium, only you can triple sodium. You have to read the sodium content of what you eat. Low carbohydrate diets don't recommend processed foods because all processed foods are very high in carbohydrates. Bacon is allowed in those diets but it's not required and you know you aren't supposed to eat it. If you really check things out, you know which foods are high sodium and which ones aren't. Fresh vegetables are okay in those diets but not a whole lot of them. Broiled chicken or fish has lots of sodium? Not unless you put it there. Sodium content is listed for the whole world to read. maddjak@hotmail.com


Julie, July 11, 1999 - Hi, I'd like to hear from anyone who has experienced depression as a result of taking Coreg. I've been at the maximum dose for 6 weeks and my emotions are very near the suface. It is affecting my professional relationships. I have always had low BP and I wonder if depression is more likely when that is the case? Please e-mail me if you've experienced this and tell me what you did to improve. Did you have to cut your Coreg dose? How much would a lower dose affect the good results from Coreg? I feel like I'm losing my mind and I felt really good before I began taking Coreg. On the other hand, I want physical improvement and help in stopping the progression of my disease. Any information you can share with me would be greatly appreciated. Julie, age 44, EF 18. JSwan2406@aol.com


Deanne, July 12, 1999 - Hi, I am age 45 and female. I have CHF and peripartum cardiomyopathy (a dilated form that comes on during labor). My child is age 5. The diagnosis was made when she was 2½. At that time, my EF was 15 to 20% and remains there today. I had 2 episodes of v-tach and had to be defibrillated in an ambulance and in the hospital so the hospital gave me an AICD, which you call an ICD here, and exposed my peripartum cardiomyopathy, which had shown up on x-ray as CHF 3 days after my daughter's birth but was called pneumonia, as 25% of peripartum cardiomyopathies initially are.
     They told me I had 1 to 2 years unless I got a transplant but Medicaid, the only thing in the world I qualified for right then, did not pay for them in Florida, my home. They suggested I move. Anyone who has done this, please contact me! After I moved to LA, Medicaid in Florida began covering heart transplants (my luck) but it doesn't totally bother me because I am seeing a whole different approach to CHF out here. Where Florida doctors pushed me to get on a list ASAP, the UCLA people were like, ho-hum, we'll see you in 3 months to set up an appointment in 3 more months so while I sat around, I found a USC doctor on the Web who answered my e-mail and saw me right away! They treat you like gold there.
     He told me they don't take too well to bus-riders over at the transplant part but he could put me in a study that might keep me 10 more years away from a transplant and that this is the optimum way to deal with this. We would put me on the list but see how we do with this study. I believe it is the Diovan trial (Val-HeFT) mentioned in one of these posts. Only 5000 people are in it worldwide. I just know - can you tell us, Jon? - that many more than that number of Americans alone must have CHF or be about to have it. Jon's note: See: this article
     I've been on Coreg, Lanoxin, Monopril and diuretics all along, although California changed the Monopril (an ACE inhibitor) to an angiotensin-receptor blocker. You can read about why they think Diovan on top of the other drugs will work on the web. Since I have small children, 10 more years pre-transplant would be a nice choice and when I asked the doctor if he would put his own daughter in this study, he said, "Are you kidding? You get 10 times the medical attention of any other heart patient!" It seems like a dream come true for me but my support system went back to Florida and says, "Basically, he's saying you've got 10 more years to worry about all this and you can come home. You need to get back home." He's sure I can get Diovan in Florida too. I was so excited to qualify for this study. The doctor said we go one of 2 ways, and we know I'm not going to languish in a hospital bed. He said, "Your organs are fine. Your creatine level is 7 and that's better than mine," and that the defibrillator will prevent sudden death. He also said his secretary was arranging so I do not need to take buses ever again.
     So I can take this drug, testing it to pave the way for your children and grandchildren and you guys, and everyone hoping for miracles from science to stomp out the pain of CHF. I am stunned that I have no support with this. I felt too ill to bus ride all day in the sun to cash my SSI check on the day rent was due and my landlord gave me 14 days to move out so I now have movers all lined up to take us back to Tampa but I don't want to go. I think if I had friends locally, I could manage here and be in this study. I am very resentful of the support system that left me here (packing is hard) and now says airily, "Great! You're not as bad as you thought you were. Now you can come back!" Remember, my doctors in Tampa sent me here for transplant evaluation.
     What would you guys do? Hurry, the computer gets packed up July 15 and I have to know where it's going then. I think I'd be a fool to go back to doctors talking transplant and give this opportunity to see my grandchildren up. Do they really get Diovan in Tampa? Thanks. Deanne. freefolk@gte.net


Jon's July 12 reply to Deanne's July 12, 1999 - Hi Deanne, Diovan (valsartan) is approved by the FDA for high blood pressure treatment but I don't think it is yet approved for CHF. That doesn't mean you couldn't get it. That would be between you and your doctor. Drug trials go on in many CHF clinics. I switched from one clinic, cardiologist and hospital to another and managed to stay in the same drug trial, so I am absolutely sure that it can be done. The only obstacles are to find a clinic in your part of Florida participating in the same trail and to be sure they are willing to do the extra paperwork necessary to keep you in the trial after your move. See www.rxlist.com/cgi/generic/valsartan.htm for information on Diovan. You can find info about trials through my Links page and through www.centerwatch.com/patient/trials.html.
     I can't really comment much on your support situation. That's a very personal decision and I don't know any of the pertinent facts, much less understand the relationships involved. I would guess that since you are questioning these people, whoever they are, that the relationships need to be questioned further and decisions made, but I can't help you make them. Sorry. Jon.


Tom S' July 12 reply to Donna Finney's July 11, 1999 - Hi, Two questions, one from another post: What is INR?
     As far as Occudata goes, I never heard of the company or organization but I am always leery of a company's that claim they can accomplish something no one else seems to be able to accomplish. For the time being, you are probably far better off filling out the forms yourself and going through the appeal process without expending a lot of funds for third party assistance. I was surprised to read that no attorney would touch your case prior to the third appeal. I have had the pleasure of applying for SSD and had little difficulty handling the forms myself. I was successful on my first outing. I recently had to go through the same process during a third year review and again succeeded in being maintained on SSD. I did not withold anything, particularly the way I felt both physically and mentally, and disclosed every little physical problem associated with my CHF, including what some would call sexual dysfunction due to fatigue. In other words, don't spare the horses or you will lose the race. Good luck. biggerbhoy@hotmail.com


Jon's July 12 reply to Tom S' July 12, 1999 - Hi Tom, INR is International Normalized Ratio. Its purpose is the same as pro-time blood coagulation testing. It is designed to replace pro-time and be more standardized, and thus more useful internationally. You can read about it under "international normalized ratio" at cancerweb.ncl.ac.uk/cgi-bin/omd?international+normalised+ratio.
     I agree that an attorney should not be necessary in the Disability process but have discovered that more often than not for CHFers, they are. I recommend getting an attorney as early in the process as possible simply because in hindsight, it is clear to me that the information I gave SS by filling out all the Disability forms myself actually slowed down the process for me. If I had used an experienced attorney, I would have given different information (still accurate), with hopefully a quicker result.
     SSD attorneys can only charge 25% of the first payment (including retroactive payment). They are limited to that by federal law and there is no charge until after you get that first check; The attorney's fee is taken out of that. The real problem with SSD is that you never know what to expect. They ignored a Work Comp court-accepted rating of 13% permanently partial disability in my case (due to serious injuries suffered while working at a lumber mill), so listing lots of health problems may or may not help. It's that famous inconsistency across the SSD system from one state and from one case to another. Still, if you choose to do it yourself, you may get it first try the way it should be, like Tom. You can get an attorney later in the process. Jon.


Ben B, July 12, 1999 - Hi, I am in the process of my first appeal of SSD and I got a form asking what type of appeal I want: simple, informal conference, or formal conference (supposedly with the person deciding). My LTD company is supposed to help me with this stuff, but I was wondering if other people received this form, and what selection people made. I really would like a face to face with somebody, but don't know if that is wise. I'd like to get as much information as possible. Thanks. bdbrinkman@juno.com


Crystal S, July 12, 1999 - Hi, This site has absolutely amazed me. So far I have felt like the only young person in the world with CHF. I see my cardiologist so often that I am the highlight of their day because I am so young and energetic. At least, I try to come off that way. Really, I feel terrible. I am tired, I feel lazy, I have vision disturbances and have terrible palpitations every time I eat a regular size meal. I am terrified to tell my doctor all my symptoms for fear that he would think that I am being a baby. He has that god complex thing going on. My son, having his heart transplant, was so all over the media here in Arizona that I feel like free publicity for him. He calls me his little patient in denial, yet when I barely open my mouth to say anything, he says "Okay, here's a new script and I'll see you in a month." I feel like a drug addict. That is the hardest thing for me: that I (we) probably all look so normal but our tickers just aren't cuttin' it.
      Then there are the times when I literally collapse from exhaustion or can hardly make it up a flight of stairs. People look at me like I'm pathetic. I think that's why I am having a hard time really accepting the fact that there is something wrong with me. My EF is 37 and I don't even know if that is good or bad because my doctor never seems to have the time to explain anything to me, just hands me more drugs. I am also having that problem obtaining my records. I have been trying diligently because I thought maybe I could get some answers by reading them myself. I got about 5 sheets of paper with some medical gibberish on them and when I questioned it, his secretary stated that they never copy the whole file because it's three inches thick and that the only thing that they would send to a new doctor would be just a summary paper anyway. I guess they think I'm a real idiot. Thanks to all for listening. It helps just to write this stuff down. By the way, my e-mail address is CSharp3957@aol.com. I messed it up with my first submission. Thank you all and God bless. Crystal.


Jon's July 12 reply to Crystal S' July 12, 1999 - Hi Crystal, You need a different doctor. I don't know how to say it any more clearly than that. Having the right doctor for you is so important I put it in The Manual.
     To those who are not getting their complete medical file from a doctor, this really is a legal right every patient has in the United States. If a doctor's staff gives you any lip or stalls, be very polite (this may be important from a legal standpoint later!) and say, "I formally request my 'complete' medical file from this institution. I understand that I may have to fill out and sign a written request form and that is fine with me." If the complete file is not forthcoming within 48 hours (my clinic copies them while you wait), tell them straight out that you know you have a legal right to the whole thing and that your next step is to contact your state's Attorney General about the doctor's staff's reluctance to comply with your request. If they still balk, DO IT!
     Call your state's Attorney General and have them advise you how to deal with the problem. You will wind up with the complete file if you stick with it. If you have a family attorney, they will usually take care of this for you with one phone call for no fee. Be aware though, that you may have to go to every hospital and every doctor and clinic where you have been a patient to get a truly complete set of medical records. Like Jack, I keep my own films as well. Jon.


Deanne's July 12 reply to Crystal S' July 11, 1999 - Hi Crystal, I think you are in the study my doctor wants to put me in. Can you tell me anything about it? Are you on an exercise program along with the new drug (or placebo)? Anything you can say about it would help! Deanne. freefolk@gte.net


Peggy Carter, July 12, 1999 - Hi to you all, What do the rest of you do about sleeping? I do not sleep before 3 or 4 AM. My doctor has tried 3 kinds of sleeping meds. They do not work. Love in the Lord. Peggy. pycarter@earthlink.net


Jon's July 12 reply to Peggy Carter's July 12, 1999 - Hi Peggy, Have you tried Ambien (Rx)? It works pretty well for me. I have found that a structured exercise session every day helps me get to sleep later. Also, if I do exactly the same things for about 1 1/2 hours before bedtime every night without fail, after awhile, the routine helps me get sleepy. Jon.


Tom H, July 12, 1999 - Hi all, This is my first time posting here so I'd like to start by saying I think this site and this group are amazing. I found this site quite by accident and was thrilled. I was diagnosed with CHF about 6 years ago. I also have severely brittle Type 1 Diabetes. I was reading a post by someone a couple of weeks ago and he mentioned a low-carb diet he was following and it was appearing to help his diabetic control. I know of several people who are now following this type of program and are having wonderful results. My question is this: Could anyone tell me a bit about this eating program? I have not been able to find out anything about it. My doctors refuse to even discuss it. I have tried numerous types of treatment plans and my sugars remain virtually uncontrollable on standard diabetic food plans. Thanks for any info you might have and I wish you all good luck, good life and good health. Tom. tusker@sympatico.ca


Jon, July 12, 1999 - Hi everyone, My pattern of answering posts here may seem erratic. That's because it is. <g> It depends partly on how I feel, how much mail I need to do that day, how many posts I need to answer on the other side, etc. My teenager is home most of the summer, so that really cuts back on the amount of time I am willing to spend answering posts; family first. I slipped from Class 2 to Class 3 CHF awhile back and that doesn't help my self-motivation either. I also try to answer more faithfully on the other forum because I expect those with CHF to do some research of their own, especially since I have provided so much info on my site, with links to much more. Still, scads of questions will remain, so if you have a question that went unanswered (to your satisfaction) or if you need an answer straight from me, please feel free to e-mail me, and I will answer within a day or two. :-). Jon.


Joe S' July 12 reply to Jack's July 11, 1999 - Hi Jack, Now you tell me! No, just kidding. What happened was my boss at the time kept telling me I didn't have to worry about sodium as long as I kept the diet. Also, I had not been diagnosed with CHF at the time. It was about 4 months after I started the diet that things started going bad. Now I read every label and am finally learning what is good and bad. Another thing I really have to watch is lifting anything over about 10lbs. I've sure learned tons from this board though. Praise God for it. JES@StevensonLighting


Joe S' July 12 reply to Julie's July 11, 1999 - Hi Julie, I read your post this morning and didn't even think about it till now. Yes, a big yes; I experienced depression and even paranoia with many of my first meds. I was diagnosed with high BP over 10 years ago and the doctors kept giving me different meds. I had to stop all of them because of heavy duty depression, but expecially paranoia. When they finally diagnosed me with CHF, they gave me Cozaar. The result was no depression but also, my BP did not lower. Then they gave me Hyzaar and my BP lowered a little but the paranoia came back. What I have done now is cut the pills in half (50mg) and take 1/2 twice a day, one in the AM and one at 3:00 PM. No more paranoia and if everyone would quit picking on me, I would be great! <g> Normally I am doing fine as long as I watch what I eat. Keep trying different approaches to your meds and good luck. JES@StevensonLighting


David ?, July 13, 1999 - Hello to everyone at Jon's Place, I wanted to post a brief update of my situation since I started Coreg at the beginning of 1999. It took me longer than usual to get to the 25mg level. Once there and tolerating that dosage, I found that I continued to feel tired and not quite myself. I was still working at the time and found my daily job and pressures wearing on me like never before. In fact, I reached a point where I stopped doing all I could in the job and did what were the priorities and main duties to keep up day to day survival mode. Also, I had experienced 2 episodes on separate days, of what I thought might be ventricular tachycardia (VT) while at the office. I didn't faint but felt weak and had to take a time out to recover.
     After hearing about my VT episodes, my cardiac doctor wanted me to have an EPS consultation. At the consult it was the EPS physicians' opinion that I should have the study and they wanted to schedule for the following week. My Vo2max test and echo were coming up June 22, 1999, to test my numbers after being on Coreg for awhile. Because of those pending tests, when the EPS department called to schedule me, I told them I was not ready to have it done at that time and wanted to wait till after the Coreg testing. I must have caused a stir! My cardiac doctor called me on the following Sunday night and we talked for quite awhile. She explained the pros and cons regarding my decision and she understood my feeling about waiting till after the battery of test for Coreg evaluation. Our agreement was that after the Coreg tests I would undergo a right heart cath and the EPS.
     The end results are that I've felt extremely good through April, 1999. However, my test results came back with no improvements and my Vo2max was worse than a year ago. My EPS found a hidden potential for VT, so as a result I now have a Medtronic ICD. I am getting used to it after 2 weeks, except for this lump on my shoulder. No shocking events so far. The catheterization also found my pulmonary pressure elevated. So, my next test this Wednesday - July 14th - is a Swan-Ganz catheter to study the pulmonary pressure and receive medications to hopefully lower it. What is riding on this test is the decision as to whether my name goes on the heart transplant list or the heart-lung transplant list.
     Needless to say I am now on temporary disability and my outlook for going back to work is certainly unclear. However, once I'm on a list it's pretty clear to me that I won't be going back. So, the moral of the story is that even wonder drugs (Coreg) sometimes don't work. David, age 51, San Francisco Bay area. DEZEN@worldnet.att.net


Julie K, July 13, 1999 - Hi Jon, I know we don't know each other but last night in church I had this overwhelming sense of God's love for you come over me and I need to pass that message along to you. God loves you! You are still his kid and in his arms, so just rest in him. I know you please him. God still has control and he loves you so much. Thank you for your ministry. God bless. Love, Julie. jkendall@gorge.net


Tom S' July 13 reply to Jon's July 12, 1999 - Hi Jon, Thanks for the info on INR (International Normalized Ratio). I have been freed from Coumadin for awhile so the monthly PT (Pro-Time) tests I have been subjected to for the past 4 years are over for now. While I agree with you on the lawyers and SSD (Social Security Disability), I just find it to be a crying shame there really is no national standard or criteria for assessing disability. It seems there have been plenty of case studies to effect a standardization for each and every disease and injury on the books. It just seems typical of Washington to throw a few bones at the true taxpayers of this country while corporate welfare goes on unabated. Now we are faced with a $24 a month rate increase for Medicare, which is being disguised as some nearly useless prescription co-payment program; truly another bone tossed our way. No doubt folks will be duped into believing it is the greatest thing to happen to Medicare since it's inception and it really is another way to weasel a few extra bucks out of the folks who can least afford it. Biggerbhoy@hotmail.com


Madelyn J, July 13, 1999 - Hi, I would like to echo the suggestions about requesting record copies from your medical files routinely, before you need them for a second opinion. I suggest asking to be copied on all major test and procedure reports such as echos, MUGA, catheterizations, stress tests and pulmonary function tests. Request videotape copies of your echos if there are changes in EF occuring. Request copies of the major blood analyses, such as kidney and liver fuction evaluations and electrolyte monitoring. If you are hospitalized, request a complete copy of your chart. I realize I am lucky that this is not a big hassle with my doctors or hospitals, but I did have to collect some records in person to make it clear how important it was to me. thom39@aol.com


Roger H, July 13, 1999 - Hi Jon, I had my echocardiogram done a month ago and my EF went up to 40%. I know this is not necessarily accurate but I still don't feel as great as the doctors seem to think I should. My heart rate fluctuates a lot. It can go from a rest of 75 if it gets that low that day to 105 just by walking across the room; other times it is less. I do a good brisk walk every evening, downhill, then uphill. My heart rate will be 125 walking briskly most times but there are times it will get down to 105. I am just curious as to how your heart rate is. Does it seem to fluctuate as much? Some days my resting heart rate won't go below 90. I am just curious as to whether this is normal or not. I am glad that they got Coreg up here in Canada. It sure made a difference in my EF but not so much in how I feel. Oh, I am walking about 5 kilometers a day. That would translate into about 3 miles, give or take a few feet. Take care. healman@hotmail.com


Jon's July 13 reply to Roger H's July 13, 1999 - Hi Roger, Keep up that exercise. There's nothing that can maintain quality of life like walking every day. My resting heart rate is around 90 and was 110+ before I started Coreg. I never track my heart rate at home since it doesn't go up past 120 on my in-clinic stress tests. My Monopril dose went up recently and I doubt that my heart can beat fast whether it wants to or not between all the Coreg and ACE inhibitor. I would be interested in how other people's heart rates respond with medication, though.
     By the way, I'm off to the dentist for teeth cleaning in a few minutes so I'll try to catch up posts later tonight. Jon.


Donna R M's July 13 reply to Donna B's July 9, 1999 - Hi, In regard to medical records, having been an accredited record technician, there always seem to be problems getting medical records. Docs view the papers as their possession but you do have the right to view your records. They are always hesitant to allow a patient access for fear they will misconstrue some of the record content. Do expect to sign an authorization for the doctor you want to send records out. Also, another area that Jon touched on, is that if you have had lab work done here, x-rays another place, caths elsewhere, you will need to secure those records from each place. It is usual practice that doctors will not re-release someone else's records to you. Just because another doc sent them copies doesn't mean that your attending doctor has to make those available at all.
     Now, sometimes to really shortcut the process, ask the doctor that you will be seeing (doc 2) to request your records from doc 1. Any doctor is expected to make records available for continuity of care; plus, they don't want to come across as a belligerent idiot to another colleague. I have always had good luck by pointing out the need for continuity of my care. Talk in their terms and then they recognize that you know what you are taking about. In no way, shape or form can a doctor or clinic refuse you access to your record, but you will only ever get copies. You will never receive the hardcopy record itself. Most healthcare institutions (hospitals or doc's office) put a pox on the docs carrying records out of the building! Donna. droppedneedle@3lefties.com


LeeAnn D, July 14, 1999 - Hi everyone, I've read a lot (thanks to Jon's info and links) about CHF and how to take care of yourself, but one thing I've heard several times, but don't really know why is that CHF patients should not lift over 10lbs. I have fairly strong arms and back, and I lift my one and 4 year olds who are both at about 35lbs. Is this really harming me? ddavis1057@aol.com


Jon's July 14 reply to LeeAnn D's July 14, 1999 - Hi LeeAnn, I doubt that it hurts you at all. I was never given lifting restrictions by any of my doctors. I think it is just that many of us who have had CHF awhile can no longer lift or carry weights much. This is due to hearts weakened over a period of time, deconditioning, reduced BP from high meds doses, and reduced lung function from years of CHF. When first diagnosed with an EF of 13%, I could exert myself quite a bit without trouble; I even trimmed tree limbs 20 feet over my head and then hauled off the branches. Almost 5 years later with an EF of 45%, I can't carry a light plastic bag of groceries 50 feet. My personal opinion would be to go ahead and be as active as you can while you can. Enjoy yourself picking up and hugging those kids, and keep yourself from deconditioning so fast at the same time. Jon.


Julie, July 14, 1999 - Hi, I want to thank everyone who responded to my post regarding Coreg and depression. JES mentioned paranoia and I've experienced that also. Most replies stated that they have been given anti-depressants to offset the symptoms instead of reducing the dosage of medication. I don't look forward to taking yet another pill, but if it will ease my moodiness and weeping, and let me remain on Coreg, bring on the pills! More than anything, it helps to know that I'm not alone and I'm not crazy. I'll keep you updated. May God bless you and yours, Jon, for your faithfulness to this Website and to all of us. JSwan2406@aol.com


Tom S, July 14, 1999 - Hi, Recently my 2 older daughters decided the frigid northern climes were adverse to their pyschological as well as physical well being so they decended upon my already substantial household of 5 children and 2 adults with 3 of my grandchildren. Needless to say, the boot is filled quite tightly and budgets are strained. Fortunately, both girls got jobs within days of moving here, jobs I might add that were sorely lacking where they were. This is a long intro to say that due to budget constraints, I thought I would take it on myself to drop my more expensive medicines, one of which is K-Dur that is taken to counteract the effects of Lasix (a diuretic), which I have been taking at the rate of 160mg daily for the past 4 years.
     Now I know why I have been taking it and to warn all of you out there of like mind to continue to take your meds regardless of financial strain. After being off Lasix for about a 1 1/2 weeks, I suddenly had an excruciating pain in my right kidney area. I thought it was my back until after about 4 days of barely being able to stand up straight, I noticed the area around my right kidney appeared to be substantially larger than the area around my left kidney. It seems I was watching my legs for signs of edema and because I had been diagnosed with arthritis of the spine, I thought the kidney pains were related. Anyway, the long and short of it is don't try to medicate yourself. I now know that is a really bad idea. biggerbhoy@hotmail.com


Jon, July 14, 1999 - Hi all, I'll get the rest of the posts up before too long. I got frustrated with a graphic I have been puttering around with for well over a month and finally decided to finish it, which took more hours than I want to admit. I did finish it and get it up on my wallpaper page but now, I'm tired. Oops! On the plus side, Yahoo-geowhosits finally got their FTP working! Jon.


Ben B's July 14 reply to Roger H's July 13, 1999 - Hi, It is hard for me to really get completely accurate readings of my heartbeat sometimes because it skips a lot of beats. However, to the best of my knowledge it goes from around 80 at rest to 135 to 140 bpm on exercise. I also walk a great deal, especially since I haven't a lot to do. I walk 2-4 miles twice a day, once flat and then once up and down hills. My doc seems to be okay with this and absolutely nothing makes me feel better. If I have a foggy head, then getting the blood pumping clears my head and lifts my spirit. For anyone not exercising and thinking they are too tired or weak, I thought I was too for awhile, then I checked with my doc and basically forced myself. It was the best thing I ever did. bdbrinkman@juno.com


Ben B, July 14, 1999 - Hi, I have a question about sodium. I keep hearing everybody say you can't eat processsed food and you can't eat cheese, plus a lot of other things. If you read the labels, and count the sodium on the labels as part of your total sodium per day, what does it matter what you eat, as long as you keep the sodium down? Or are the labels incorrect? bdbrinkman@juno.com


Jon's July 14 reply to Ben B's July 14, 1999 - Hiya Ben, It doesn't matter at all as long as you accurately tally your daily sodium. I think the reason you hear warnings about it is that the sodium levels are so high in those types food, that as a general rule it is wise to skip them entirely. Also, a lot of people majke the awful - and I mean awful, terrible - mistake of estimating their intake instead of keeping a written daily tally, and they really need to establish "safe" eating habits. There are a couple of types of "real" cheese finally available here that are low enough in sodium that I can eat enough to know I am really eating cheese <g> but one meal of "processed" food usually takes up well over half my daily intake so it's just easier to leave them on the shelf. Keep counting accurately though, and you can enjoy! Jon.


Claudia S, July 14, 1999 - Hi, I am wondering if someone taking Coreg, who has had a increase in their EF%, was then able to reduce their medications such as Lasix? I am also wondering if someone could explain the difference in taking Coumadin versus an aspirin? I am taking Coumadin but it is making me very nervous. I don't feel that way about any of my other medications. I see my cardiologist next week only for the second time and I want to be well informed about Coumadin. I have read the drug report but wondered about the comparison with aspirin? I do not have AF and have no family history of stroke. I hope everyone is having a good week! I'm glad to hear Lisa and Robin got their heart transplants, and pray their recovery is going well. One more thing, I had a doctor here that moved to California and I have been trying to get those records for years. She just ignores all my requests. Out of state is a real problem. Claudia, EF 15%. CMSchm@aol.com


Phyllis A, July 14, 1999 - Hi all, My cardiologist mentioned at my June 14th appointment that I may need a pacemaker. At each visit I have been getting an EKG and there were changes in the results. He increased my meds and said if that doesn't work, then we would talk about a pacer. Anyone who has a pacer, would you please tell me of your symptoms and what tests were done that warranted you getting the pacer? My heart has been beating irregularly the last few weeks, fluttering, missing beats and racing. I have some of these symptoms with mild chest discomfort, even some fluttering in my neck area. I wore a holter monitor for 24 hours but since I returned it, I haven't heard from him. No news is good news, they say. Thanks. phylcasurv@msn.com


Crystal's July 14 reply to Deanne's July 12, 1999 - Hi Deanne, I actually just finished the study. Initially, I had to go every 2 weeks for about 2 months, then every 4 weeks for about 4 months. Each visit consisted of blood work, treadmill for as long as I could possibly stand it with increasing speed and incline every couple of minutes, then a 20 minute recovery period. I had to fill out the same questionnaire each time also and I had to keep very meticulous track of any changes I was having and any over the counter meds, vitamins, etc. It's best to document basically what you do or take daily.
     I was on the drug and it improved my EF from 37 to 47, which was the best improvement so far in this study at my doc's office. The bad part was that my pressures got so low that even though my EF improved, I felt so lightheaded all the time, I actually felt worse. When I completed the study, they cut me off the drug and my EF went back down to 37 but I feel better. So part of my problem now is that I know I should probably be on it but at a lower dose, although I really don't want the drug at all. The study was on the drug Diovan, manufactured by, I believe it is Novartis. I hope this helps out a little. God bless all. Crystal. CSharp3957@aol.com


Hope M's July 14 reply to Peggy C's July 12, 1999 - Hi Peggy, Maybe your sleeping problems are caused by meds. I tried Avapro for a while, and had a terrible time sleeping. Another man in our heart support group noted the same problem and said he was taking Avapro and when he stopped, he was able to sleep. So rather than looking for meds to help you sleep, maybe you need to look at changing some meds that are keeping you awake. Hope. hlmcneil@earthlink.com


LeeAnn D's July 14 reply to Roger H's July 12, 1999 - Hi everyone, My heart rate when diagnosed a little over a year ago was 170 at rest. After a week in the hospital and being put on diuretics, digoxin and an ACE inhibitor, it was generally 90 at rest. Now that I've been on Coreg for awhile, it is almost always 62 at rest and rarely gets up over 100, even when I exercise and feel like I'm pushing it. My BP is usually 90/50. My friends say if I were any calmer, I'd be in a coma. I was in a fender bender awhile back and didn't get that pounding heart feeling at all! Also, I don't have that panic feeling when I have to speak in front of a group like I used to. Has anyone else experienced this? I'm assuming it's from not absorbing adrenaline. LeeAnn, EF 30, age 38. ddavis1057@aol.com


Al H's July 14 reply to Donna F's July 11, 1999 - Hi all, I have personally used the Occudata legal firm. I did all the paperwork initially myself through the first denial. I have talked to many of the old posters here and found many varied experiences. I wish we all could be as fortunate as Tom S to get it right the first time and then make it through the 3rd year review without any help. Tom's initiative is something I always had before. Now with my disease, I find it difficult to focus and carry through on things without feelings of total frustration. I found the SSD process to be totally without standards. However, there are many volumes of standards the SSD staff follow to the letter of the law.
     The disability insurance company I filed with awarded me Disability without any hesitation but SSD was another story. One of the requirements for me to get the Disability initially was to continue filing for my SSD. Occudata was recommended to me by my insurance company. I found them to be thorough and professional. Many of their legal staff has either worked for the Social Security Administration or in the field. They know what they are doing.
     It is not an overnight process, so do not expect that. Occudata did not take my case until they felt I (not them) was qualified for SSD. It did not cost me any money until I was awarded the funds (there are limitations on how much an attorney can charge you, as Jon said). Occudata asked the correct questions of my doctor. In my local community, I went to my lawyer, who had completed in the past other unrelated legal tasks for me. He was willing to take my case on but suggested since I had an education which would allow me to complete the forms that I continue on my own. I did not agree. My lawyer friend really did not understand the legal issues with SSD, thus I contacted Occudata. Mr. Bob Wirtz was the Occudata attorney I worked with and I found him to be very professional and knowledgeable in the SSD area. Through the process of working with me and several articles I e-mailed him, he and his family have gone through the process of organ sharing consideration. bobal@notnow.com


Robin W, July 14, 1999 - Hello again, This is Robin's husband giving an update on her condition following her 7/4 transplant. Robin is looking and feeling very well. She had to remain in the ICU until July 11th before being moved to a standard room. This morning (7/14) is her first biopsy (standard procedure) to check for rejection. If all goes well, she will be allowed to come home tomorrow. This is amazing to me, only 11 days post-transplant. Thanks again to everyone for the kind support and I'm sure that Robin will be back online soon. jwilson@nb.com


Terry T, July 14, 1999 - Hi all, I have DCM and have been on Coreg for 2 years and other standard meds for almost 6. Although my EF hasn't improved much (16-20) by echo, which isn't really reliable, I do feel better. The changes since Coreg have been lowered heart rate, fewer PVCs, lower blood pressure, fewer episodes of angina, and I can sleep on my left side! I notice some people complaining about fatigue with Coreg. For my money, fatigue is better than the only option most of us with DCM had before Coreg, which was death within five years. So, those of you who don't think you can tolerate the major side effect of Coreg, be aware that you probably won't live as long without it. terturn@aol.com


Jon's July 14 reply to Terry T's July 14, 1999 - Hi everyone, This is one of those posts I hate to make since it looks like I'm just being contrary but honest guys, I'm just trying to keep everything accurate as possible. The trials to date show longer life span with Coreg for CHFers and that's great. In fact, that's the only reason I take the stuff, since it hasn't made any difference at all in my symptoms, but ... It's a new drug and hasn't been on the market long enough to back up the trial results with "real-life" data. The dismal CHF statistics we all see at some time or other and worry about do not yet include widespread use of ACE inhibitors, which in themselves, lengthen CHFers' lives.
     Twenty-five mg a day of Aldactone (spironolactone) has been shown to also lengthen our lives. Cholesterol lowering drugs have shown a cardio-protective benefit, as have some supplements like taurine, propionyl-L-carnitine and CoQ10. The benefit of some of these for CHF has only been found this year!
     In this day of breaking medical news and small, quick trials, we forget that the drugs we take for granted, like ACE inhibitors, are recent developments whose impact on our life span still isn't fully appreciated by most patients. They all contribute to this goal, as well to our comfort. So don't get depressed if you cannot tolerate Coreg. Lots of pharmaceutical developments have been recently made and more are in the pipeline that will hopefully keep us humming along for quite a while yet (see New CHF Meds for a few). Trials are also underway now that will help us know if it is beta-blockers in general or just Coreg that gives benefit to CHFers. We just have to wait and see on that one. Those of us who can take Coreg appreciate its potential benefits, but that doesn't leave those who cannot take it entirely out in the cold by any means. Jon.


Cecil's July 14 reply to Tom S' July 14, 1999 - Hi Tom, With regard to the high cost of medicine, try asking your doctor or nurse if they will fill out an indigent patient form for you. I do not know if the manufacturer of K-dur honors these but I get my amiodorone for free by filling out this simple form every couple of months. Give it a try, it might help. Cecil3744@aol.com


Kim S, July 14, 1999 - Hi everyone, I have had great news this week! I had a MUGA scan this past Tuesday and my heart size and function is back to normal (55%)! It has been a year since my diagnosis of peripartum cardiomyopathy and congestive heart failure. My EF has improved from 10% at diagnosis to 55% now. My daugher turned a year old on the 4th of July and we are truely celebrating. I remain on Vasotec, Coreg and digoxin and probably will for the rest of my life. I do need to add that my patience, peace of mind, and great faith in God has proved to be essential in my miraculous recovery. I am grateful for the people I have met, my PPCM Website that is doing well, and the many friends I have made because of this illness. God bless! Lalakimmie@aol.com
 
Jon's Note: Congratulations!


Rod Butler, July 15, 1999 - Hi, I have CHF. I use potassium "salt" frequently in stews, soups, lightly on vegetables, porridge and homemade bread. I find it a very useful salt substitute although too much can have an unpleasent aftertaste in things like soups or stews. I also have 2 pieces of fruit a day and do not need any potassium pills to replace the potassium washed out by Lasix. My potassium tests always are in the acceptable range. Potassium salt seems to be hardly ever mentioned here or anywhere else as a salt substitute. Is there any reason why I should not continue using this product? rvbutler@axion.net


Jon's July 15 reply to Rod Butler's July 15, 1999 - Hi Rod, I don't recommend it on my web pages because my CHF specialist told me to avoid it. He thinks it could have an effect on my potassium level, especially since if used out of a shaker, use is not accurately measured or regulated. I might get a bunch one day and then not much for 2 days, then a bunch, and so on, making maintaining a steady potassium level difficult. That doesn't mean no one should use it, just that if you do, it may be best not to be erratic in your use of it, kind of like Coumadin users having to maintain a regular intake of certain foods to avoid messing up their INR. For some of us, it's just easier to avoid it altogether. Besides, I hate the metallic taste. ;-) Jon.


Ruthie A, July 15, 1999 - Hi everyone, First I want to thank those of you who sent me thoughts and prayers. I will contact each of you individually as I get stronger. I am feeling a bit better, although it is a long, slow process. Since I have diastolic heart failure, my heart works too hard and the walls are too thick to contract properly. So any effort has been too much work for my heart to handle and it has definitely been objecting. We have been trying to figure out how to keep my heart from working more than it has to while still allowing me to at least function around the house a bit. We are in the process of bringing down my BP as low as I can tolerate without passing out, which means adding even more of my ACE 2 inhibitor. I guess adjustment fatigue will be with me for a while more. We have increased my new diuretic to its maximum dose to help the Lasix keep fluids off. It is a nearly impossible job, since my heart does not pump well. At least we have been able to keep the fluid out of my lungs most of the time, so I can breathe fairly easily but my legs, feet and liver are still pretty big. There is hope though, because I still have some options for meds and I have 2 knowledgable cardiologists on my team who are working hard.
     Thanks to all of you for your support. Please continue the prayers; my hubby is still struggling, too, so please don't forget him as well. Ruthie A. rlaba@preferred.com


Will W's July 15 reply to LeeAnn D's July 14, 1999 - Hi Lee Ann, I just read your post on lifting. I was told not to lift more than 25lbs when I was still working. I asked my doctor why and he said that anytime you lift, it instantly raises your blood pressure. Good enough reason? heart266@tco.net


Joe S' July 15 reply to LeeAnn D's July 14, 1999 - Hi Leeann, I was told not to lift anything over 20lbs but I didn't pay much attention until one day about a month ago, I had to lift a 50lb box 3 times from floor level to waist high. My heart started pounding so badly I had to go to bed for half a day to get it to slow down. I checked with my chiropractor and another medical friend and they both told me I had strained the area in my spine which connects to the heart. As soon as my chiropractor adjusted me, everything came back to normal. Since then I have been going in every week and getting an adjustment. Everytime I go in, that area of my back is sore in the same area, right in the middle, right between my shoulder blades. The medical friend verified what my chiropractor said. I wish I could remember the term, it was something like sublication or the like. I am thoroughly convinced there is a direct relation between this area of the back and your heart. By the way, I have never had a back ache, ever and that's for 60 years of living. Read my bio. I talk a lot more about the relationship with back exercise and heart. Joe S. JES@StevensonLighting.com


Marc S' July 15 reply to Claudia S' July 14, 1999 - Hi Claudia, I went from a 21% EF at my initial diagnosis to 48% after taking 100mg of Coreg daily for 6 months. I was taken off Coumadin as well as Lasix, so there's hope for you with Coumadin. I am blessed with an outstanding heart failure team at Oregon Health Sciences University, and they have my complete trust. However, after receiving the good news, I stopped monitoring what I ate and increased my physical activities to include such things as volleyball. The next thing I knew, I felt like I had when I first took metropolol; as if my heart was nothing more than a hunk of meat in my chest, just taking up space, and I had no energy. My EF dropped to 29% and I went back on Coumadin and Lasix. Never forget that you have a life-long affliction which will always require discipline, regardless of how good you feel. Don't make the same mistake I did! marcntimi@wvi.com


Joy R, July 15, 1999 - Hi, I haven't posted for awhile but I read the posts daily. I have DCM and also a digestive motility problem which keeps me from eating. I am on IV dobutamine for my heart and IV hyeralimentation for my nutrition. Essentially, except for a few hours, I am on IVs constantly. I have been trying to find a support group of others like me who have severe digestive problems. Jon's site is the very best and has helped me accept many of my disabilities by listening to others and being able to vent in the posts. So I hope someone can help me find another support group so I can talk with others who have digestive diseases. Joy. wapalaremi@home.com


Terry T, July 15, 1999 - Hi all, I just wanted to thank Jon for his very thoughtful reply to my Coreg toleration statement. I really wasn't trying to discourage anyone, just making the point that sometimes we have to bite the bullet and put up with some discomfort before we realise a benefit from some of these meds.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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