|
|||
|
|||
|
|||
|
|||
Ruthie A 4-1 update, clonidine & beta-blockers, moving & more
Felix O 4-1 CPAP for apnea, side effects, seek others
Luc D 4-1 missing Liz J
Jamie S 4-1 update, MUGA, EF & more
Ginger 4-1 Gino to be at Chat Sunday & more
Gerald F's 4-1 reply to Felix O's 4-1 CPAP machines, apnea & more
Bill D's 4-1 reply to Audrey's 3-31 info, inspiration & more
Bill D's 4-1 reply to Sara ?'s 3-31 info, living with CHF & more
Bill D's 4-1 reply to Kim ?'s 3-31 welcome to Jon's Place
Robin W's 4-2 reply to Brenda H's 3-31 Coreg dose, questions
Carolann S 4-2 intro, what questions to ask doc? & more
LeeAnn D 4-2 update, depression zappers
LeeAnn D 4-2 hey Bill, massage questions & more
El R 4-2 update, lifestyle & getting better questions
Sara ? 4-2 still struggling, holiday wishes
Sara ? 4-3 questions
Ben B's 4-3 reply to Carolann's 4-2 are you on an ACE inhibitor?
Virginia P 4-3 Vesnarinone
Jon's 4-3 reply to Virginia P's 4-3 Vesnarinone
Bill D's 4-3 reply to LeeAnn D's 4-2 massages, exercise & more
Bill D's 4-3 reply to El R's 4-2 getting the whole picture
Bill D's 4-3 reply to Carolann's 4-2 welcome, CHF info & more
Linda L 4-3 hi, update & more
Lynn D's 4-3 reply to LeeAnn D's 4-2 massages
Anne M 4-3 moxinidine, clonidine & some questions
Kim S' 4-3 reply to LeeAnn D's 4-2 depression zappers, Coreg dose increases
Claire F's 4-3 reply to Gwendolyn's 3-31 hot peppers for GI problems & more
Jay Q 4-3 machine heart rate readings
John ? 4-3 diagnosed with CHF, questions
Bill D 4-3 pooter upgrade & more
Brenda H 4-3 Coreg & depression question
Ruthie A's 4-4 reply to Bill D's 4-3 software, doing good & more
Jim H's 4-4 reply to Pete E's 3-22 statistics, new treatments & more
Leland's 4-4 reply to Brenda H's 4-3 adjusting to Coreg
Luc D 4-4 Easter wishes
Sara ?'s 4-4 reply to John ?'s 4-3 go to a cardiologist ASAP & more
Debbie R's 4-4 reply to Brenda H's 4-3 Coreg depression will get better
Will W 4-4 Easter wishes
Ben B's 4-4 reply to Jay Q's 4-3 do you have any irregular heart beats? & more
Julie Kendall 4-4 am I cured? seeking a friend & more
Jon's 4-4 reply to Julie Kendall's 4-4 like a fool, I'm jumping in
Della R's 4-4 reply to John ?'s 4-3 lots of bugs going around & more
Marion Godzik 4-4 intro, EF vs how I feel & more
Bill D's 4-4 reply to Ruthie A's 4-4 did I do that? & more
Bill D's 4-4 reply to Jay Q's 4-3 Coreg, heart rate & more
Ginger's 4-5 reply to Ben's 3-14 PVCs, chat & more
Lee R's 4-5 reply to Julie Kendall's 4-4 EF vs how you feel & more
Lee R's 4-5 reply to Marion Godzik's 4-4 bad days, EF vs how you feel & more
Duane 4-5 rising EF vs how you feel, update & more
Lynn D 4-5 rising EF & Coreg, need definition
Terry T 4-5 Coreg experience & more
Amy G 4-5 seek CHF info & correspondence
Jim H 4-5 intro, questions for doc & more
Bruce S 4-6 Coreg & does anyone like gardening?
Tony P 4-6 seek info on drug trial
Jon's 4-6 reply to Tony P's 4-6 drug trial possibilities
Christine 4-6 anxiety attacks, herbs questions, & more
Don T 4-6 intro, vitamins & supplements, SOB & more
Lee R's 4-6 reply to Amy G's 4-5 PPCM, CHF info, resources & more
Lee R's 4-6 reply to Jim H's 4-5 don't be a stranger
Linda O's 4-6 reply to Duane's 4-5 back pain & CoQ10 question
Kelinda Spears 4-6 to Sunny
Kelinda Spears 4-6 to Amy, postpartum cardiomyopathy
Valerie D 4-6 intro, Silver Springs doc, Coreg questions
Pete E's 4-6 reply to Julie K's 4-4 EF, energy level & more
Pete E 4-6 check out online store & supplements
Gail B 4-7 intro, high BP questions & more
Susan P 4-7 update, valve job, a-fib & more
Ella R 4-7 seek LBBB info & more
Candy 4-7 has anyone had surgery post-CHF? questions
Bill D's 4-7 reply to Don T's 4-6 CHF & SOB info, docs & more
Bill D's 4-7 reply to Valerie D's 4-6 CHF info, procedures & more
Bill D's 4-7 reply to Christine's 4-6 CHF info, diabetes, sleeping & more
Jack's 4-7 reply to Christine's 4-6 supplements, herbs, dangers & more
Marion G 4-7 hi to everyone, thanks, work questions & more
Kim S 4-7 seek SSD personal experiences
Julia H 4-7 PPCM, seek doc & more
Bruce S' 4-8 reply to Marion G's 4-7 athletics, gardening, thanks & more
Bill D's 4-8 reply to Gail B's 4-7 K-dur side effects & more
Debbie R's 4-8 reply to Marion G's 4-7 coping, nitro question & more
Linda O's 4-8 reply to Candy's 4-7 CHF & healing, & more
Kristine Conner 4-8 asking advice for AHA CHF site
Ben B's 4-8 reply to Gail B's 4-7 question about sweating
Jon's 4-8 reply to Ben B's 4-8 sweating pre-CHF
Louise N 4-8 muscle aches & headaches - any ideas?
Lori Wilson 4-8 post-surgery update
Joy R 4-8 thanks for being here
Marty's 4-8 reply to Kim S' 4-7 SSD process vs working
Malcolm 4-8 intro
Della R's 4-8 reply to Kim S' 4-7 SSD & to Marion G
Milo's 4-9 reply to Mark E's 3-13 thanks, glad to be here
Milo's 4-9 reply to Jon's 3-13 what is restenosis
Jon's 4-9 reply to Milo's 4-9 restenosis
Milo's 4-9 reply to Bill D's 3-12 good one
Milo 4-9 faith, coping & debate
Jon's 4-9 reply to Milo's 4-9 faith & debate
Milo's 4-9 reply to Gene W's 3-7 work hours, valves & more
Milo's 4-9 reply to Jeanette W's 3-11 dealing with emotions as well as illness
Pat D 4-9 intro, glad to be here
Jamie S' 4-9 reply to Lori Wilson's 4-8 hope all goes well & more
Gerald Fansler's 4-9 reply to Debbie R's 4-8 nitro, exertion, edema
Jill S 4-9 Coreg & weight gain questions
Mac 4-11 angina & meds, & more
Jana B 4-11 intro, Disability question & why don't family get it?!
Doug K 4-11 e-mail address change, update & more
Marty's 4-11 reply to Jack W's 4-10 praying for you & your family
Christy Marshall 4-11 intro, questions about working, vitamins & more
Marion G's 4-11 reply to Jack W's 4-10 sending prayer, talk of death with family & more
Jack's 4-11 reply to Pat L's 4-10 weight gain and Coreg
Bill D's 4-11 reply to Brenda Snow's 4-10 welcome, forum birthday & more
Bill D's 4-12 reply to Cooper B's 4-10 welcome, heart transplant bios & more
Bill D's 4-12 reply to Jack W's 4-10 caring for your mom
Paul M's 4-12 reply to Marion G's 4-10 5 year statistic & final arrangements
Jane M's 4-12 reply to Christy M's 4-11 asthma & CHF, working full time with illness
Sara S' 4-12 reply to Jana B's 4-11 relatives who don't accept your illness
Carolann S' 4-12 reply to Jana B's 4-11 relatives who don't accept your illness
Joe D's 4-12 reply to Pat D's 4-10 numbness in arms and legs
Rick M's 4-12 reply to Jana B's 4-11 relatives who don't accept your illness
David A 4-12 Coreg and blood pressure questions
Norman 4-12 what is CHF? & more
Jo 4-12 Disability, new med question & what is EF?
Audrey 4-12 thanks Lee, update & more
Cathy P 4-12 still here, questions
Lee R's 4-12 reply to Jana B's 4-11 Disability, relatives who don't get it & more
Lee R's 4-12 reply to Christy M's 4-11 ICDs & arrhythmia, resources & more
Ginger's 4-12 reply to Jana B's 4-11 chat room is up, family help & more
Milt's 4-12 reply to Christy M's 4-11 working with CHF questions
Melvin 4-12 nausea & vomiting - anyone else? & more
Milo's 4-13 reply to Steve S' 3-31 echo & EF, lower back & legs
Milo's 4-13 reply to Gwendolyn's 3-31 all you want to know about bowels
Jana B 4-13 a poem
Bill D's 4-13 reply to Robin's 4-12 nausea & loss of appetite with meds
Marion G's 4-13 reply to Melvin's 4-12 stomach problems, diet, coping & more
Tom S 4-13 SSD review
Roger G 4-13 update, headaches
Roger G's 4-13 reply to Gail E's 4-10 tolerating Coreg
Cooper's 4-14 reply to Bill D's 4-12 transplant wait, artificial heart
Jo 4-14 EF, DCM, The Manual, Ruthie A
John B 4-14 endothelin blocker trial
Jon's 4-14 reply to John B's 4-14 endothelin blocker trial
Robin 4-14 SSD question
Al M 4-14 sweating, weight gain & loss
Jon 4-14 weight gain
Jim H 4-14 update, diagnoses & more
Ben B's 4-14 reply to Jo's 4-12 statistics, meds, new treatments & more
Angie H 4-14 intro, seek CHF info
Sara ? 4-14 update, do hearts ever get normal? & more
Heather S 4-15 update & then some
Maggie S 4-15 intro
Bill D's 4-15 reply to Jon's 4-14 cut my Coreg back for another reason
Bill D's 4-15 reply to Robert F's 4-14 living with CHF a long time
Bill D's 4-15 reply to Angie's 4-14 learning about CHF
Chuck 4-15 will I be normal again?
Ruth ? 4-15 intro, seek correspondence
Steve S' 4-15 reply to Milo's 4-13 leg pain, EF & more
Renee M's 4-15 reply to Jack W's 4-10 sympathies, possibilities
Ruthie A, April 1, 1999 - Hi everyone, I had my first appointment with my new cardiologist in Vanderbilt's heart failure program. Jon sure is right: If possible get to a specialist in CHF. It makes all the difference in the world! I didn't have to explain things anymore, and that in itself was a big relief.
Remember the clonidine discussion? I was taking it along with 100mg of atenolol and having some pretty bad side effects. Last Friday I was given a plan to come off the clonidine and the withdrawal effects were worse than taking the stuff! I was so discouraged and so sick that I wanted to start on them again. Nearly a week later I am doing much better and most of the symptoms have disappeared. If any of you are taking clonidine with a beta-blocker, talk to your doctor about changing to some other med. This one's not one to play around with!
On a final note, I am moving again after only 6 months in Nashville. Hubby got a fantastic new job in Johnson City, Tennessee and we move in 2 weeks. I will be offline for at least a month or so with no e-mail, so your prayers are the only support from here that I will have. But I will be starting cardiac rehab the first week of May, so that will help. I'm looking forward to both the exercise and the opportunity to make new friends. Take care, y'all, and Happy Easter. Ruthie. rlaba@mindspring.com
Felix O, April 1, 1999 - Hi Everyone, I was diagnosed with Obstructive Sleep Apnea three weeks ago and started CPAP therapy. Using a CPAP machine to sleep is kind of uncomfortable but the benefits derived from this therapy are worth all the trouble. I now have more energy, can sleep well, and the depression is gone. My mind is more alert and my hart is getting some rest too. I am suffering from constipation in the mornings. It seems that my stomach has been filled with air. I have been told this might be caused by mouth breathing during the night. Is this true? Does anybody out there have any experience with CPAP therapy? I hope this problem disappears once I get adjusted. Any comments or experiences regarding CPAP therapy for people with DCM will be appreciated. God bless you all. Felix O, age 34, DCM. felixor@prtc.net
Luc D, April 1, 1999 - Dear friends, I would like to say that we have lost a very good women on our site and I would ask for a prayer not for me, but for Liz. She gave me so much courage and support. I have to say that I am very sorry she's with God now. We all could learn something from her. I hope we can go on. Just like her, we all must give our friendship and support to other people. We are not alone with our heart disease. There are lots of other people who didn't find our site and don't get the courage and support from us. Thanks for listening to me. Sincerely, Luc from Belgium. Luc.Deseins@ping.be
Jamie S, April 1, 1999 - Hi, The MUGA went well. It was getting there that didn't go quite right. I got my first ticket. The fancy machine tells you the EF. Well, the technican said, "You never had a problem with your EF, right, because it is 71% and everything looks good." I gasped. 71%! I'll get the preliminary results in a week; wall function and all that stuff. I've been off Coreg since February 26, 1999, so hopefully that is long enough to have it out of my system and the work my heart is doing, it's doing on its own. My EF was 52% in July of 1998, 35% in February of 1998, 30% in December of 1997. Just for some of you out there who wanted to know but I didn't get back to you. G'Day everyone. Jamie. JamieDan@prodigy.net
Ginger, April 1, 1999 - Hiya's, I hope everyone is doing ok. Gino, our friendly cardiologist, will be in the chat room on Sunday night at 8pm Eastern time. I realize that it is Easter but it is the only night he will have free since his shift is not on our regular nights right now. I will be there and hope to see a few of you, too. He looks forward to answering questions for us. I wish all of our own docs were like that. Stay well, ya'll. Whoever it was that wrote they have had cardiomyopathy for 30 years, thanks for sharing that. It's very uplifting to hear it. I look forward to hearing more from you and maybe you can make it to our chats that we have 3 times a week. Hugs, Ginger. mystery@laker.net
Gerald F's April 1 reply to Felix O's April 1, 1999 - Hi, I've had sleep apnea since my early 30s. I am now 62. I was diagnosed and treated in 1988. I had a heart attack in 1990 and 1997. I once weighed 260 and now weigh 185. I was diagnosed with CHF in 1997 but had symptoms since 1994. Sleeping laying down with apnea and CHF is a trick. When I started taking Lasix (80mg morning and evening), I could sleep laying down. I can gain or lose 10lb in 12-36 hours. I take Zaroxolyn in addition, when I really swell. The CPAP machine is a fight but keeping it clean and fresh is half of the problem. Sometimes you might need to take a moderate pain pill like Ultram for the discomfort. Not sleeping with air pressure can kill you, usually slowly. It's a tough problem but won't go away if ignored. glf25685646@msn.com
Bill D's April 1 reply to Audrey's March 31, 1999 - Hi Audrey, Welcome to Jon's Place. Be sure to see all the stuff he has hidden under Site Index at the top of this page. It sounds like you've been through the mill! I thought your message was pretty "inspirational" too! Bill. billdog@gate.net
Bill D's April 1 reply to Sara ?'s March 31, 1999 - Hi Sara, Welcome to Jon's Place. His site is much larger than you think. In addition to the messages on the forum, Jon has over 200 pages and links to CHF information. Click on Site Index at the top of this page. Start by reading "The Manual." It explains what you want to know and why your doctors tell you, "You might get a little bit better." We're all happy to meet somebody who's had mild congestive heart failure as long as you have. <g> If you really read a lot of Jon's information, you'll understand CHF a lot better. Bill. billdog@gate.net
Bill D's April 1 reply to Kim ?'s March 31, 1999 - Hi Kim, Welcome to Jon's Place. We're glad to have you aboard our leaky old boat. <g> The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Click on Site Index at the top of this page. You might start your education by reading "The Manual." Some of us print it out for folks who don't understand (like your family). You'll be able to find answers to all of your questions, including what you need to ask your doctors and expect from them. Bill. billdog@gate.net
Robin W's April 2 reply to Brenda H's March 31, 1999 - Hi Brenda, Hopefully everything goes smoothly for you as you titrate up the Coreg. Personally, I had only one brief problem and that was fatigue the first two days after I went to 6.25mg twice a day. After that everything was smooth sailing and I have now been on 25mg twice a day for two years now. As for me, I am anxiously awaiting <lol> my scheduled stay at Club Med, checking in on the 28th. One quick question (I'm kind of embarrassed I don't know this), is April Organ Donor Awareness month? I have tickets for my god-daughter and me to see Rosie O'Donnell on 4/12 (watch and look for me). If it is awareness month, I want to try and contact the coordinators and see if they will mention it or allow me to. I think that seeing a candidate makes the issue real for people and may get them to sign a donor card. Maybe it's possible to have her distribute them to her audience? Is this a realistic thought, yes or no? Let me know what you guys think - send me an e-mail. Robin W, age 31, EF 8%. jwilson@nb.com
Carolann S, April 2, 1999 - Hi Y'all, I was just recently diagnosed with DCM; a week ago today, in fact. For 3 months I was being treated for asthma which was not improving. During a yearly checkup with the internist, I insisted on having some sort of heart test. I was taking Cindy M's advice as she is on another mailing list of mine. Last Thursday I went to the hospital for an echo. As a severly obese woman, the proper window could not be found. The tech immediately called the cardiologist who came and did the echo herself. She explained that I had an enlarged heart which wasn't functioning properly and had me come directly to her office. I was alone and in shock. I called my best friend a thousand miles away, in tears. He gave me the strength to dry up and see what the cardiologist had to say. At the appointment, she explained that I needed a serious lifestyle change. She mentioned that my heart was working at 30%. I had never heard the term EF before, so I don't know if that is what she meant.
She immediately put me in Coreg, Lanoxin and Lasix. A week later, I feel tremendously better. My shortness of breath has eased tremendously. I am now off the misdiagnosed asthma meds and I am sleeping at night. I continue to do water aerobics 3 times a week. At the end of April I go for a sleep apnea test. The doc believes that lack of oxygen from apnea caused my problem. Two days after that, I return to the cardiologist. I will be prepared to ask more questions. Does anyone have a list of prepared questions for the newly diagnosed? I am thankful that Cindy told me about this site. I am sure additional issues will come up regarding my treatment and I look forward to your input. So, from the sunny south and resident Georgia Peach, I say good night. Carolann. saphirebbw@aol.com
LeeAnn D, April 2, 1999 - Hi everyone, I missed reading The Beat last week! Right before that, I kind of got depressed while my husband was in Holland. He got back but leaves again in the morning. Anyway, I see a therapist who counsels through the heart institute here and thought I'd share some depression zappers.
I know this is all pretty much common sense and you've all heard it before, but here's a little reminder for someone out there who needs it. Take care everyone, LeeAnn in Phoenix. ddavis1057@aol.com
LeeAnn D, April 2, 1999 - Hi all, Bill, I think I remember (yes, I'm too lazy to look it up in The Archives) that you get massages, right? Anyway, my husband gave me a day at the spa for Christmas and it includes an hour long massage. Then one of my friends who gives massages says it releases toxins into your system and maybe it wasn't good for me. I haven't had one since I've been diagnosed. I'd love to get one. What is your experience? I'm also wondering about the body wrap. You probably haven't had one of those, have you? <G> LeeAnn. ddavis1057@aol.com
El R, April 2, 1999 - Hi, I had a first visit yesterday with a new internist here in town who is more than willing to work with my doctors in California. In fact, he didn't even question why. This is a long overdue change. My former internist told me, after the heart biopsy fiasco, that he was the other doctor's (the one who had done it) very close friend. I should have left in 1994 but this new guy was great. He agreed with the meds that I am on from UCLA and said it was aggressive treatment but called for with my EF. He said he would do the same thing. I am feeling much more secure with these decisions.
I heard from someone, I don't recall the name, who mentioned an LV doctor her husband sees: a Dr. Karen Arcotta. I will have to see who her partners are. Sadly that makes a difference but I have heard very good things about her. Because my husband works in the OR, he knows the people on the heart team and the surgeons and the impressions that they make on the staff. It is a valuble insight for me, knowing how they are when they work. I read a recent post on here about an EF that greatly increased after stopping a med. Can you tell me what that is about? Is it possible to get better? Is it possible to up the function of the heart by doing the right stuff, like exercise and diet? To what extent? I thought my hope was to remain the same. I have never asked many questions about what to expect of my doctors. When I read about the expected span, 5 years after diagnosis, it blows my mind. I'm there, 5 years ast February. I am also at the point where I want to know what to expect. Any input is welcome. El (my first name really is El).
Sara ?, April 2, 1999 - Hello everyone, I hope everyone is doing well. I just want to send blessings to all of you during this Easter and Passover holiday. I am still trying to put all this together. Even though I have read The Manual, I still don't understand a lot of my diagnosis. Oh well, I'll figure it out. I am going to the cardio doc on the 8th and will have a lot of questions for him. Stay well and enjoy the weekend. Lot's of love and prayers to all of you, Sara. sunny33904@aol.com
Sara ?, April 3, 1999 - Hi everyone, Bill D, thanks for your input and info. Has anyone had a blockage in the heart that prevents a part of it from moving (akinetic)? My doctor says I should have a heart cath to see if it is permanently damaged or if I have a blockage that maybe an angioplasty would help. I have heart damage and am allergic to dyes so they have to give me benadryl and steroids. I would appreciate anyone's input. My EF is 25%. I am on aspirin, zestril,and amiodarone. He said he might put me on Coreg later. I am visiting in the south and will be going home as soon as the doctor says it's ok. Thanks and stay well. sunny33904@aol.com
Ben B's April 3 reply to Carolann's April 2, 1999 - Hi, I was just wondering if you are on an ACE inhibitor or ACE 2 inhibitor, a medicine ending in pril, or Vasotec? You mentioned Coreg, Lasix and Lanoxin. I just know that if you are feeling good with these, the ACE inhibitor will really help. It turned me from near death feelings and inability to sleep, to basically okay function for a sick guy. Maybe you just didn't mention it. bdbrinkman@juno.com
Virginia P, April 3, 1999 - Hi, A couple of weeks ago, I had a sinus infection and had to visit my allergist. He questioned me about a drug, "vesnarinone," which he said he had read an article in some medical journal and patients who have CHF and are on this medicine are dying. I have tried to look it up but find nothing on it. I'm just wondering if anyone is taking it. Better check with your doctors or at least be aware of the name to question its use with CHF patients. Apparently the article said they were giving it to patients with CHF. Have a happy Easter. Virginia P. vpauline@stc.net
Jon's April 3 reply to Virginia P's April 3, 1999 - Hi Virginia, I was in the original Vesnarinone trial. It ended a few years ago due to high mortality in those taking the actual drug (I was). Another trial was begun for those patients who benefited from the drug because there was a group of CHF patients who got outstanding benefit from it and they were more than ready to give up a long life for a good but short one. I believe that trial was recently ended but I am sure there will be Vesnarinone given to certain of those patients who are pretty much hopeless without it. It is not a drug that should be given to CHFers in general and the FDA has not approved the drug for general CHF use, so no doctor should be able to prescribe it outside the investigational trial setting. I believe it has ended its trials now, so it may not even be available in that way anymore. Jon.
Bill D's April 3 reply to LeeAnn D's April 2, 1999 - Hi LeeAnn, I'm not the guy who told you I got massages! Not only that, I wouldn't get within a hundred yards of a body wrap! You're the one who's supposed to exercise, not some masseur who's in great shape to start with. Tell your husband to buy you a treadmill. Bill. billdog@gate.net
Bill D's April 3 reply to El R's April 2, 1999 - Hi El, You are coming up with scraps of information that will only confuse you. You need to know all about CHF and the place to do it is here. Click on Site Index at the top of this page and start educating yourself about what you have! The forum is mostly for support. Site Index has the real information. Regarding "someone," you have to go back in The Archives and see who, then write to them. We have people from all over who read the forums. Only one in a thousand can use information about a single place. <g> Bill. billdog@gate.net
Bill D's April 3 reply to Carolann's April 2, 1999 - Hi Carolann, Welcome to Jon's Place. We're glad to have you aboard our leaky old boat. The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Click on Site Index at the top of this page. You might start your education by reading "The Manual." Some of us print it out for folks who don't understand. You'll be able to find answers to all of your questions including what you need to ask your doctors. Bill. billdog@gate.net
Linda L, April 3, 1999 - Hi Jon, hi all, I have been gone for quite awhile. I had to come by and say hi. Hi! Well, last time I talked to my cardiologist was about 3 months ago. He said that my heart is doing better. Actually, after this year long of resting and not stressing my heart, it has actually opened up a bit and the valve that was to be replaced is now on the edge of critical. Yea, means no surgery for a while. I am going back to college and I have become so interested in geneology that I do not have the time to think about the situation I am in. I take full advantage of the disability parking and stuff like that. I cannot climb stairs but I can go down them ok. I am just so grateful to the powers that be that I can at least breathe. I am taking good care of me and making my time count. I just wanted to share this with you, my good friends. I know how quickly this could turn around, so I do not take it for granted. Take care, all. Linda L. owina2@pdrpip.com
Lynn D's April 3 reply to LeeAnn D's April 2, 1999 - Hi LeeAnn, I get a massage every 2 weeks and have been doing this for 2 years. My massage therapist requested a written permission from my doctor. Blood clots are the main concern. It makes all the difference in the world for my flexiblity, pain control, circulation, and keeps me feeling happy along with better sleep the day I go and a few days afterward. I think it is a terrific way to keep healthy. In my opinion, it should be covered under health insurance like our doctor visits instead of sometimes being covered a small amount under wellness care. lynndaniel@mindspring.com
Anne M, April 3, 1999 - Hi, I have been following the posts since I found this site in January. I have learned a lot. I noticed some comments about clonidine and would like to relate my recent experiences. In January, I began the Moxcon trial that was trying out moxonidine. I did very well with the drug. We even went for a Caribbean cruise, which necessitated a long flight from Totonto to Fort Lauderdale and I coped. I was actually feeling like a normal person, even though I had to lie down with the CPAP every afternoon. Shortly after we got back, I was hit with the news that the trial was being stopped. As soon as my dosage was lowered, I had severe tachycardia, felt extemely nauseous, and very ill. I was put into ICU in the hospital to be monitored and to try clonidine. The clonidine effectively slowed down the heart, but I have developed an allergic reaction to it with itchiness on the palms of my hands and soles of my feet and anywhere else that chances to get warm. Now I am taking prednisone to counteract the reaction. There is something wrong with this picture.
Apparently moxonidine has been used in Europe and South America for the last 4 years for hypertension, so it is available on compassionate grounds. While in the hospital, an echo was done and my EF has gone from 10% to 25%. The chambers of my heart have shrunk and my mitral valve is now working more effectively. Good news! I see the cardiologist again on Wednesday so I hope we can get the moxonidine organized again. I cannot take beta-blockers because I have diagnosed asthma and apparently even if I took a small dose of beta-blocker, I would be in terrible trouble. The moxonidine was a great solution. My understanding is that the drug company, Ely Lilley, didn't want to proceed since the market for the drug was small and it would be too expensive to market. Has anyone out there got any information or experience with this? I would sure appreciate any feedback. Until then, I am trying not to scratch in Toronto! Anne. cmeda@istar.ca
Kim S' April 3 reply to LeeAnn D's April 2, 1999 - Hi everyone, LeeAnn, I loved your depression zappers! I'm tired of these cold weather blues and looking forward to spring. About Coreg, I thought I'd share my experience. I noticed a huge difference in my energy level when I began Coreg but with each dose increase, I could count on being in bed for 3-4 days. I finally made it to 25mg twice a day and it was the worst 6 weeks I've had lately. I had headaches, head rushes, dizziness, fatigue and nausea. It would last for a few hours after taking my medication. I just couldn't tolerate this much longer so my cardiologists cut me back to 12.5mg twice a day. He said I'm still benefiting from Coreg and the side effects disappeared! I think Coreg is a great CHF drug but it definitely takes awhile to see what your body is comfortable with. lalakimmie@aol.com
Claire F's April 3 reply to Gwendolyn's March 31, 1999 - Hi, I have inherited dilated cardiomyopathy with compensated CHF. Many of my DCM symptoms are intermittantly present. After a past EF of 25, 6 years after diagnosis, my EF is now 55. However, no matter how happy my heart is, I have upper GI problems. The GI problems are the least problematic if I get 10 hours or more sleep per night and exercise regularly. After 3 years of cardiac rehab, I joined the local YMCA. Under both programs, I had supervised aerobic activities and weightlifting and Nautilus use. My GI problems involve esophogeal and upper stomach motility or lack thereof. The food doesn't always go the right direction. I have no problems if I do not eat. We tried everything. Eventually, we found cisapride helped. However, it takes ½ hour to kick in so you have to remember to take it. It is also fairly new and no long term effects are known. One thing I noticed is that Mexican meals were less of a problem so I experimented with hot peppers. I have found that capsicum helps if the problem is not severe. My family and some doctors think I am nuts. What I have found is that if I take a sip of vinegar that has had hot peppers sitting in it, my esophagus and stomach motility kick in momentarily. It works within 5 minutes and the effect is about 10 minutes in duration. I actually carry around a small 15ml dropper bottle and squirt one to put drops on my tongue as needed.
Jay Q, April 3, 1999 - Hi y'all, Since getting a "little" DCM (like getting a "little" pregnant) my heart is my hobby. Recently I picked up a heart monitor with wrist readout. The treadmill I use also has a readout but is giving weird results for the same sender, on my chest. For example, rates of 150-160 when my wrist readout and hand-taken pulse give 108. Other machines in the cardio room behave simularly so this does not seem to be a machine problem. Has anyone had similar experiences? If so, or not, I am interested in exchanging info. I will be tormenting my internist and cardiologist with this and other questions soon. I hope the answer isn't just "Duh." Cheers. Jay Q. affinis@aol.com
John ?, April 3, 1999 - Hi, After 3 months of colds and flu, I was informed that I have remnants of pneumonia and now CHF. I spent yesterday in the emergency room, and was sent home with Lasix and potassium. I still feel terrible, have no energy and am constantly out of breath. Any suggestions? Wilding1@aol.com
Bill D, April 3, 1999 - Hi all, My good friend Jerry Ellis convinced me that he should come up and upgrade my computer and upgrade he did! He put in all kinds of stuff. Just the Norton Utilities Integrator takes 15 minutes to load! <g> Every second my clock gets corrected by an atomic clock in Colorado somewhere. Every other second a little voice says: "Uh Oh!" and an ICQ message is blinking, wanting to be read and interrupt whatever I was thinking about. Every time I get an e-mail there's a knock-knock, which I thought was Rosie. It's taken me hours just to find out how to send e-mail on my MS Outlook.
On the downside, during the transfer, all your addresses were lost along with all my Sent mails and my Deleted mails. That means if I forgot what you are talking about, I don't have any place to look. On top of that, my Mayo Clinic Pharmacist, my Compton's Atlas and Encyclopedia, and my Internet Phone programs won't work on Win98. I'll miss the Mayo Pharmacist program most because they didn't come out with a version for Win98. It allowed me to check meds, side effects and contraindicated meds for you. billdog@gate.net
Brenda H, April 3, 1999 - Hi, For anyone who has experienced depression with Coreg, please tell me it will go away! This is my sixth day and it started this morning. My husband seems like the most insensitive guy on the planet! I feel all alone, please tell me it will go away. Thanks for your support, trying to hang in there. Brenda H. Hansonfoxi@aol.com
Ruthie A's April 4 reply to Bill D's April 3, 1999 - Hi Bill, I grieve with you about your program losses, especially the Mayo Pharmacist program. It was because of what you said that I found out about clonidine and beta-blockers. It was because of what you said that I made the effort to apply to and get accepted into the Heart Failure Program at Vanderbilt. It was because of what you said from that program that I feel so much better now. Even my family and friends are commenting on the difference since I came off the clonidine. So I am sad but the good that has been done by your accessing that little reference tool is immeasurable and for that, you can be grateful. I know I am. Ruthie. rlaba@mindspring.com
Jim H's April 4 reply to Pete E's March 22, 1999 - Hi Pete, Thanks for the info on survival rates. You confirmed what I was thinking when you said that all CHFers were included in the stats. I know that DCM is generally associated with aging, so it only makes sense that the mortality rate could be quite high. As I said, I have no symptoms of DCM so I am a little hesitant to post here because I feel guilty about posting on a site where so many people have serious problems that I don't have. The only problem I had was adjusting to Coreg. I thought that stuff was gonna get me before the DCM did. <lol> I finally did adjust to it and I guess it is helping but like I said, I didn't feel bad before I started taking it. Have you heard about immune globulin treatment? It is being done in Pittsburgh and from what I can find out, it is supposed to work really well. I asked my doc about it and he said it was too early to tell if it would work or not but if it didn't work, then a person would have all the anti-bodies of everyone you got the blood from, and the likelihood of rejection from a transplant would be much higher because there would be several different peoples immune systems trying to reject the new heart. Oh well, it was just something that sounded promising and interesting. Well, once again, thanks for the info and remember to keep the faith because some day DCM will be thing of the past. Jim H. EF 32% and holding (I hope). JHall58317@aol.com
Jon's Note: See Heartbytes
Leland's April 4 reply to Brenda H's April 3, 1999 - Hi Brenda, I'm sorry to hear that Coreg does not agree with you. There are many documented cases of beta-blockers such as Coreg causing these general symptoms: dizziness, fatigue, lethargy, depression, headache and nightmares. Some of these symptoms will lessen over time. Can you hang in there for a month's trial? See Kim S' April 3 reply to LeeAnn D's April 2, 1999. Llyee@prodigy.net
Luc D, April 4, 1999 - Dear friends, I want to wish you all a very Happy Easter! Sincerely, your Belgian friend, Luc. Luc.Deseins@ping.be
Sara ?'s April 4 reply to John ?'s April 3, 1999 - Hi John, Don't walk, run to the nearest cardiologist. You need further tests, like an echo or stress test to begin with, to determine exactly what is going on and if it is CHF, you will need more then just Lasix. Stay on this wonderful site and you will get a lot more information and help from our friends, who know more as they have dealt with this disease longer. Good luck, Sara. sunny33904@aol.com
Debbie R's April 4 reply to Brenda H's April 3, 1999 - Hi, Your husband isn't the most insensitive man on earth, my ex won that prize. In answer to your question, you will come out of the depression. I just had my Coreg upped a couple of weeks ago and have just come out of the depression. There is light at the end of the tunnel! After reading the letters posted here, I'm just realizing this is what has been wrong with me. I thought maybe I was getting sick again or was in a horrible depression. I did have a friend die during this time but she had cancer and I was glad she was out of pain. I just had no energy and was barely able to function and do my everyday stuff. You know, like getting out of bed, let alone getting ready for work. It'll get better! Debbie R. Debbiedo@aol.com
Will W, April 4, 1999 - Hi everyone, I would like to wish everyone a Happy Easter and may each one have a better year so that I may wish you all a Happy Easter next year. God bless and look over you.
Ben B's April 4 reply to Jay Q's April 3, 1999 - Hi, Do you have any irregular beats such as PVCs? Various methods of measurement have different sensitivity and accuracy as far as measuring irregular beats, depending on the transducers and integrated circuitry used. Some devices have signal averagers to detect all the beats. I have a lot of PVCs and some runs of bigeminy (one PVC followed by a regular beat). When I measured by hand, at the wrist or on my finger on my home treadmill, it didn't seem like I could get my pulse above 80 no matter what I did. I thought I must be a marathoner. Then I went on the fancy treadmill at my doctor's and he said my heart rate went up to 160 really quick, which is more like it for a guy like me. klbrinkman@msn.com
Julie Kendall, April 4, 1999 - Hi, I have a quick question. I read in the CHF description that a normal EF is 55 or above. My EF has risen over the last 2 years from around 30 to 56 the last time it was checked. The problem is, I feel exactly the same. Does that mean medically I no longer have CHF? Am I cured? Why, if a normal heart function is 55 or above, am I still dependent on Lasix to not swell up? Thanks, love, Julie.
PS. If anyone out there lives near Portland Oregon, I could really use a friend, a face to face friend dealing with this condition, too. Jon posted my bio, I'm new! jkendall@gorge.net
Jon's April 4 reply to Julie Kendall's April 4, 1999 - Hi Julie, Welcome to Jon's Place! Your question is the toughest one I ever try to answer. I am nearly in the same boat. My EF has gone from 13 to 45% in the past 4 1/2 years.
There are many ways to measure "function." I'll tackle heart function, the way our bodies function overall - utilizing the oxygen it gets from freshly pumped blood, and functional class.
Many measurements can be used, like pulmonary wedge pressure, cardiac output, and cardiac index, but I am going to focus on the ones most of us already understand, okay? Heart function is generally measured by EF. The closer we get to 55% or higher EF, the closer our heart function is to normal. That doesn't mean we can live a normal life or that we feel normal, just that our heart pumps a normal amount of blood per beat. This is a problem that has only arisen for most people since Coreg was approved for CHF. Coreg raises our EFs but does not always raise our ability to function normally in our everyday life. Medical science is far from perfect and as far as I can tell, they just don't know why yet. This is being seen more and more and is now becoming accepted as just the way it is for a lot of us. Let's hope SSD feels the same way!
The way our bodies utilize oxygen can be measured with a Vo2max test. As discussed earlier, below 14 on this one means we are approaching need for transplant. With an EF of 45%, my Vo2max is only 13.5. Go figure! A normally functioning heart doesn't mean a normally functioning body. This may be for many reasons. Keep in mind that if you never exercise, your Vo2max reading will be artificially low because your poor old body is just not able to use oxygen well due to being in lousy condition overall!
Functional Heart Class is defined in The Manual. This measures your actual ability to do day to day tasks and to physically cope with the demands of the day. You could have an EF of 55% with a functional class of 2 or 3. It does happen.
Are you cured? Please read the first section of The Manual very carefully. You have an underlying condition or cause of your CHF. If that underlying cause or condition is "cured," then it depends on whether you suffered any damage while in CHF. A poor blood supply to other organs caused by CHF can damage them or the heart may have been scarred. If enlarged for too long, you may have developed arrhythmia - lots of things to consider. If your heart was damaged during a viral attack, you may never be cured - the damage might already have been done and going off meds would bring back CHF - or not. Same for a major heart attack. If you had coronary artery disease and a bypass or angioplasty cured that condition, you may be cured for good, or not, if your arteries close up again. If chronic high BP brought on CHF, damage may have been done to different body systems. You may never suffer CHF again but you may need medications for the rest of your life to sustain that normal heart function. If you stop taking them, you might go back into CHF. Does that make you cured? It depends on your definitions. <g>
Then again, you may have actually been cured and you may just need to exercise and eat right until your body regains tone and strength. This is why we have CHF specialists! You should really sit your doctor down face to face and have him answer your questions at length until you really understand your own personal situation. My CHF doctor never has used the word"cured" to me. He prefers to say that I am "well compensated," meaning that my CHF (symptoms) is under excellent control for now.
Please keep in mind that I am not a doctor and I simplify everything even more than my own meager understanding to reach the most people. Am I cured? I believe this is a question that can only be answered by a specialist who knows all the facts about you. Still, we can get a general understanding of our illness to help us understand what he tells us about ourselves. Jon.
Della R's April 4 reply to John ?'s April 3, 1999 - Hi John, I have posted here a couple of times. This site is really great and my heart goes out to everyone with all the various conditions and intolerances to meds. I recognized that your recent problems sounded a whole lot like my most recent bout with CHF. The day after Christmas I was down and out with flu and pneumonia (with ear infection, acute sinusitus and conjunctivitis, and ensuing espisodes of hypoglycemia). I was treated with antibiotics twice and still didn't get over it. On March 1, I wound up in the ER and was admitted. I was treated with Lasix to get rid of the fluid and had respiratory therapy. The next day, they shipped me off to St. Francis in Peoria by ambulance, where treatment continued and my cardiologist did an angiogram. No intervention was required this time. My arteries were much better than in 1997 when they were in there.
When I left the hospital, I still had some fluid in my lungs and my kidneys weren't functioning as well as they should have. I was in the hospital 4 days. Anyhow, just last week I finally began to notice a marked improvement. Even the nagging cough I was blaming on my Vasotec has all but disappeared. My sinuses still drain some but, hey, I feel so much better! There were so many bugs around this year and most folks took "forever" to get to feeling better. I encourage you to stay in close contact with your health providers and hang in there. Try to keep a good positive attitude. You'll be in my prayers. God bless you. dellerdo@inw.net
Marion Godzik, April 4, 1999 - Hello everyone, I just found this site today. Where have I been the past 2 years?! I'm a fellow CHF patient, due to DCM. I've been diagnosed for 2 years and still can't believe it. I'd like to ask one question of all of you. My EF on diagnosis was 20%. I went to cardiac rehab and am on many meds, as are all of you. My last echo showed that my EF was 40 to 45%. I still on a daily basis get that short of breath, can't get enough air feeling. I also had an incident 3 weeks ago when I was out shopping with my mother where I got to a point where I couldn't breathe well, and was so tired I literally couldn't move another step. It scared me. Has that ever happened to any of you? I finally called my cardiologist. He said that I should give him a call on Tuesday if I don't feel better and he'll do another echo. I really hate to have those "off days." Thanks for any info you can send me. Feel free to write me at my e-mail address. Thanks. mgodzik@aol.com
Bill D's April 4 reply to Ruthie A's April 4, 1999 - Hi Ruthie, C'mon, I didn't do all that! I was so proud of what you said, I had Rosie come in and read it! All is not lost! Rosie still has Win95 on her computer and son Willie will install Mayo Clinic Pharmacist CD there come Thursday. Then all I have to do is copy down the meds and walk over to Rosie's computer, persuade her to save her Backgammon, and look them up. <g> Many of the meds are listed at the Mayo Clinic Oasis site. Be sure to check the Pharmacopia before you punch the Search button. Proud Willie! billdog@gate.net
Bill D's April 4 reply to Jay Q's April 3, 1999 - Hi Jay, I take Coreg and I don't think my heart rate would go over 80 if I was falling off the Empire State Building. <g> Seriously though, when I used the HR gadget furnished by the rehab people, sometimes it would go crazy. It's the kind that you wet and strap around your chest. It transmits your pulse to a wrist watch thing. The nurses said if I got too near someome wearing another one, they'd fool each other and add up both of our beats. Bill. billdog@gate.net
Ginger's April 5 reply to Ben's March 14, 1999 - Hiya Ben, Aren't PVCs just about as annoying as they can be? I have them. I have had them all along. They caused me problems for a while. I got told to stop exercising for a while, had 699 of them in a 24 hour period on a Holtor monitor test. Then they got bad enough that I ended up having to go for a EP study which turned out ok except they couldn't do anything because they are multi-focal. So now, I have pills for anxiety on days when they get to me. I can go days and not have one and then have days where I have them all day long. I hate them. Don't laugh but when I get heartburn or get too full, I get them worse. Go figure. To all those at chat last night, my server went down and stayed down. Jon is working on fixing our chat room problems also. So you people that have tried to get into the chat room and can't, hang in there and try again. It will get resolved. Stay well ya'll, and I hope everyone had a good Easter. Hugs, Ginger. mystery@laker.net
Lee R's April 5 reply to Julie Kendall's April 4, 1999 - Hi Julie, I had the same questions you did about EF going up and actually I don't feel as well at 40% as I did at 29%, althought that is not a big difference. Jon's answer was very thorough and helped me understand what my cardiologist has been saying all along, it's not the numbers that matter, it is how you feel. I do feel better when I'm exercising. I don't live in Portland, Oregon - would you believe New Jersey? I hope you find someone out there. Cardiac rehab might be a good place, if you are eligible. Stay in touch. Bestest, Lee. LeeRoush@aol.com
Lee R's April 5 reply to Marion Godzik's April 4, 1999 - Hi Marion, I am so happy you found Jon's Place - it is the place to be. I have had DCM (no known cause) for about 2 years, and my EF has gone up but I still have days where I just do what is absolutely necessary and I curl up with a book. That usually happens when I overextend myself the day before. Take a look at The Manual for CHFers. It's listed in the Site Index and there's tons of other stuff there too. It will help you understand about those off days. Are you still exercising? I loved cardiac rehab. I hope you are feeling better today. Please let us know and feel free to write me at my e-mail. Bestest, Lee. LeeRoush@aol.com
Duane, April 5, 1999 - Hi, I went to Mayo this past December and they found my EF was up to 45-50%, with a mildly dilated left ventricle. They couldn't believe it. My EF was 16% in October of 1997 so they asked for the films. I sent them the films and they said the 16% was right and they don't know why it is better. I know from the forum that a lot people get better numbers but still don't feel better and that is me. The best part is that with new numbers, I have talked my back surgeon into working on my lower back; I have almost non-existent disks. I go in tomorrow for a fusion from L2 to s1. I am hoping this relieves the pain, The back pain has been harder on me than the heart. I don't post much but read often. Thanks a lot Jon, for keeping this going. Duane. djclink@kdsi.net
Lynn D, April 5, 1999 - Hi everyone, My EF went up a bit like Jon described. The Coreg creates this increase in EF but I don't really see much difference in my symptoms. I need some help with the definition of Chiari net in the right atrium. I can't find a site to describe what it is. Thanks. Bill D, if your dictionary is up, I'd appreciate the help. lynndaniel@mindspring.com
Terry T, April 5, 1999 - Hi everyone, I just want to throw a little different seasoning in the stew. I am a 52 year old male who has had DCM-CHF for close to 7 years. Two years ago, I started on Coreg, with the usual ramp-up in dosage to 25mg twice daily. I noticed no negative difference in the way I felt at any time since I have been taking it. My cardiologist's nurse would call after every increase and ask how I was feeling and he couldn't believe I could tell no difference at all. The major benefit I have gained is the large reduction in episodes of angina and PVCs. I used to get chest pain so badly after eating, I would eat 6-7 times a day to reduce the stress on my heart. Now, I rarely have a problem unless I over-exert myself (mostly upper body). However, I started on CoQ10 a few months after the Coreg, so I'm not really sure which (or both) of them is responsible for these pleasant developments. I go in for an echo in a couple of months for the first time in 2 years, so I'll let you know if my EF and leaking valves have improved, which I feel certain they have. terturn@aol.com
Amy G, April 5, 1999 - Hi, I am 26 years old and was diagnosed with CHF (post-partum cardiomyopathy) in September of 1994. I stumbled on this site today. I am on 40mg Accupril, 0.25mg Digoxin, 75mg Lopressor twice a day and 40mg Lasix. I am looking to talk to people that have CHF and understand how I feel. I would like to learn as much about this condition as possible. Please e-mail me with any information or if you just want to talk. Amy G. NPGBear@aol.com
Jim H, April 5, 1999 - Hi everyone, This is my first time to post. I have CHF but don't have the information of my condition as the folks do at this site. I sure have some questions for my doctors now. Thanks to Jon and all the good people who post here. I read the posts every day and have a world of information as a result. I hope I am doing this right. I am just starting to use the computer. If someone wants to e-mail me, please do. Have a good evening and God bless. Jim Ha. Bubba2ha@aol.com
Bruce S, April 6, 1999 - Hi everyone, I just wanted to say a quick hello. I check all the posts everyday. I hope all you people starting Coreg will give it time to work. I really felt bad from 25mg a day for about 4 months. Hey, does anyone else like to garden? It really does make you feel better. If anyone does, e-mail me and we'll talk plants. God bless all! baspencer@rtelco.net
Tony P, April 6, 1999 - Hi everyone, I appreciate your help about my Vo2 numbers. I would like to ask Jon about a trial that I found out about on the Web. It is awaiting approval to be tested on humans after a good success on pigs and mice. It is gene therapy where they inject an enzyme AC6 though a catheter. The company, Collateral Therapeutics in San Diego, says that AC6 makes the heart strong again. Please tell me how I go about getting in this trial. Thank you and I wanna wish all you good people on the site a happy and healthy Easter. Thank you, Tony P.
Jon's April 6 reply to Tony P's April 6, 1999 - Hi Tony, Collateral Therapeutics has a number of products in the pipeline right now. I think you mean the one at www.collateralthx.com/site/tacorgen.html. If so, you can write the company at info@collateralthx.com . Ask them for info on trials and locations that may be participating. Jon.
Christine, April 6, 1999 - Hi, I am glad to be writing to you all since I have just gotten back online and have been reading your messages, which is very helpful and a blessing to those of us who are new kids on the block. I had my heart attack on 12/30/98 and was in the hospital for 5 days. I have been an insulin dependant diabetic for 21 years, so I guess that played a big part in my heart problems. I have no other diabetic related problems, as I am very careful with my diet and for the last 5 years have become vegetarian, although not 100%, since I love my fish. Other than that I have also done away with almost all fats. I still have a time trying to control my blood sugars and cannot understand what else to do. I am now considering going to see an island doctor who says he has taken diabetics off insulin, especially with his well acclaimed Waiane Diet for Hawaiians (I am not Hawaiian) but would like to look into his diet and exercise program. Other than that, have any of you been able to get good control? Please let me know.
Since my heart attack, I have been put on Mevacor and Cozaar with a baby aspirin a day. I have to undergo the stress test on April 13 but for some reason could not go through with my prior appointments since I had what seemed like an anxiety attack. I could not lie down for the 20 minutes under the scan. Has anyone experienced this? I have never been like this before and am very embarassed with this kind of thing that I went through. I would also like to hear if you have, and what you did when this happened?
My doctor plans to put me on Coreg, the smallest dose, after I get the stress test done. I hope and pray all goes fine. I was recently speaking with a friend who gave me a book called Left for Dead by Dick Quinn. He recommends Cayenne pepper capsules, a special blend that is sold at a store with Hawthorn and garlic, supposed to help circulation, the heart and other related problems. He also recommends lecithin, especially soy lecithin granules, which he says is an artery flush if taken at 3 tablespoons a day for 12 days. Has anyone taken these and what has been the result? Dick Quinn swears by these products although he has passed away since but his family is reaserching these herbs. I plan trying them out in the near future but would like to hear from you all.
Thank you reading this long e-mail and take care of yourselves. Thank God that you live each day because it is a wonderful experience. I am 48 years old and have 3 beautiful kids and a very supporting husband, so I want to make the most I can with them. That is half the battle won, so to speak. Until I hear from some of you, aloha from sunny Hawaii. Chrisd1950@aol.com
Don T, April 6, 1999 - Hi Everyone, This is my first post since finding this site a month ago. I have read all of the posts and am very thankful for the info I have received. I am a 66 year old male who was diagnosed with CHF in August of 1998. This diagnosis was as a result of the test for a skipping heart beat. My EF at the time was 40. My doctor has prescribed a number of meds, which includes Coreg (12.5mg twice a day), Lanoxin, Isodril and Avapro. Because of feeling so tired a lot of the time, he recommended a number of vitamins like anti-ox formula and colloidal minerals. These have helped a lot. I am not tired like I was earlier. Lately I have noticed an increase in shortness of breath. I don't know what that is about but I see my doctor on the 7th. Thanks for all the input. Don T. ca65@aol.com
Lee R's April 6 reply to Amy G's April 5, 1999 - Hi Amy, and welcome! There are others here who have been diagnosed with PPC and I'm sure they'll be in touch. In the meantime, you could check out the bios at Who's Who here at The Beat. Just look at the Site Index and you will find enough info to keep you going for quite awhile - I'm still getting caught up! Jon and the others here do a great job! Bestest, Lee. LeeRoush@aol.com
Lee R's April 6 reply to Jim H's April 5, 1999 - Hi Jim, as Bill would say, welcome to our leaky boat! I'm glad you wrote to us and that the forum here really helped. I think we all feel the same way. Stay in touch with us, Jim, and you might think about adding your bio to the Who's Who page and there are also chat times (see the Site Index). Take good care and write often. Lee. LeeRoush@aol.com
Linda O's April 6 reply to Duane's April 5, 1999 - Hi, I hope your back improves and you are out of pain, Duane. I will sure be thinking of you and will certainly keep you in my prayers. I guess the magic word for back patients is patience. Be sure and do exactly as your doctor asks. I have been having quite a time with kidney infections and wondered if Q10 would have any effects on this? I sure hope not since I feel it has certainly been beneficial. Linda O. norvalo@clarindda.heartland.net
Kelinda Spears, April 6, 1999 - Hi all, Sunny, I sent you an e-mail but perhaps it might not get to you as I didn't scroll down and read this before I sent it to you. I just clicked on to your e-mail address of sunny33904@aol.com. I am wondering why no one has considered putting you on the North American Transplant List, when it is obvious you are not improving? I have suffered like that, with an EF of 15%, night sweats, heart racing at over 190 beats a minute, and trying to look after a 3 month old son. It is not a good quality of life at all! Send me an e-mail. Kelly-Ann.Speers@exhange.pwgsc.gc.ca
Kelinda Spears, April 6, 1999 - Hello all, Amy, My name is Kelly and I was diagnosed with PostPartum Cardiomyopathy on March 24, 1994. I have sent you an e-mail. I hope you receive it. Scary stuff, this CHF, huh? How long after your child was born, were you diagnosed? My son was 3 months old and I suddenly couldn't breathe, I had chest pain, my left arm was numb and it felt like someone was stabbing me right between my ribs. I couldn't breathe without it hurting. Wow! The cardiologist I saw sent me home with aspirin, patted me on the head, and told me it was all in my head and that I had been suffering from postpartum depression, was all it was. I almost died because of him. Send me an e-mail if you can. Kelly-Ann.Speers@exchange.pwgsc.gc.ca
Valerie D, April 6, 1999 - Hi, I have also had congestive heart failure twice. I have never heard of Coreg. Please tell me something about it. I am on aspirin, cardizam, K-Dur, Lasix, toprol, Lipitor, niaspan, vitamins, Vasotec, Prilosec and a few others. I could really use some information about Coreg. I have had 2 bypasses and numerous caths and ballons and stents. To the person who wanted to know of a doctor near Silver Spring, there is Dr. Satler at the Washington Hospital Center. My main cardiologist is Dr. William McLaughlin in Winchester. He is tops but Dr. Satler did my procedures the last 2 times in D.C. and I believe I will need to go again when things start to close again.
Jon's Note: See this page
Pete E's April 6 reply to Julie K's April 4, 1999 - Hi Julie, I share your pain, to coin a phrase, about not feeling as well as before. When my EF was 10 or so, I seemed to be able to do more and have more energy then I do now. Awhile back, there was a discussion of this topic here and most patients seemed to have a letdown in energy after a few years. Hang in there, things are not as bad as they seem. Pete E, EF 25. Peiden@skypoint.com
Pete E, April 6, 1999 - Hi everyone, I would like to invite all readers of Jon's Place to the new Healthy Heart Market on-line store. You can find many low sodium and sodium-free food products at www.healthyheartmarket.com/. I would love feedback about what all of you think about the store. Also, I am starting to carry some supplements. I would appreciate it if you could let me know of any supplements that you may use that I do not carry, and if my prices are competitive. I have shopped the Net, and I think the prices for the supplements are some of the best around. I appreciate any feedback I can get. Thanks, Pete E, EF 25. Peiden@skypoint.com
Gail B, April 7, 1999 - Hi everyone, This is my first time posting and I would like to start by saying that this is a fantastic site. The posts and links are very informative and helpful. I am a 44 year old, non-drinking ex-smoker and was diagnosed February 1 of this year with CHF. I had been treated the last week in December of 1998 for walking pneumonia. I was experiencing spells where it felt as though my bronchial tubes were closing off and I couldn't get any air in my lungs. This would last a few minutes and then I would be fine. After about 3 weeks, this stopped. Shortly thereafter, I started becoming short of breath. I could not make it up a flight of stairs or complete a sentence without gasping for air. I went back to my family doctor and he did an EKG. He immediately sent me to the emergency room, thinking that I may have had a heart attack. It was determined that I had not had a heart attack and after an echocardiogram, I was diagnosed with CHF.
The doctor said my heart was slightly enlarged and was pumping at about 30%, with 60% being normal. Other than shortness of breath, a blood pressure of 160/110 and excessive sweating, I had no other symptoms. My oxygen level was good and I had no pain of any kind. I was started on medication - Digoxin, Monopril, K-Dur, Coreg and Lasix - and spent 4 days in the hospital. There seemed to be no side effects from the meds and my breathing began to return to normal. I returned to work the following Monday. On Wednesday, I began suffering from a very intense burning sensation that seemed to start about an hour after taking my nightly Coreg and K-Dur. The best way to describe it is as hot lava flowing from my stomach all the way through my intestines. Nothing relieved it. Over a period of days, these spells became longer until they were almost constant. Thinking it was either Coreg or K-Dur, I called my cardiologist. He said that it couldn't be the meds and to see my family doctor to find out what it was.
My family doctor put me on Axid twice a day. This gave me no relief so he put me on Prevacid twice a day. Prevacid relieved it somewhat but not very much. I returned to him and told him that I couldn't go on like this. I had not eaten in almost 3 weeks and could barely drink water. I lost 20 pounds in that time. He sent me to the emergency room, where eventually I was diagnosed with pancreatitus. I was put on hydrocodone and kept on the Prevacid. They also gave me an IV of something because my blood pressure was 210/120. After 12 hours, I was finally allowed to go home. The following week, I returned to my family doctor for follow-up and he took me off the K-Dur, thinking it may have been the culprit. The intense burning stopped almost immediately but recovery from the pancreatitus took about 3 weeks. I have lost 35lbs since this began. My blood pressure is still averaging 160/110 and last time I went to the cardiologist, who still has trouble believing K-Dur was the problem, my blood pressure was 200/110. He added Norvasc to my daily drugs but there doesn't seem to be any change yet. This is frustrating to me and my doctors. My family doctor went back through 3 years of records and could find no history of high blood pressure.
Today, I feel fine, with no symptoms of CHF at all. I have resumed all previous activity with no problems. The doctors feel that a virus may have caused the CHF but if my blood pressure doesn't come down, it may cause permanant damage. Has anyone else had this problem? My cardiologist said that he doesn't usually see blood pressure this out of control until someone has had CHF for years. I am looking forward to hearing if anyone else has had this problem. b08548@frontiernet.net
Susan P, April 7, 1999 - Hi Friends, I haven't posted for a very long time, but I'm still here and reading the posts on a fairly regular basis. My heart got a lot better for about 10 months last year. I got a new job (computer programmer/systems analyst with excellent insurance, so my e-mail address has changed, and I was doing quite well until about a month ago. It's a-fib again and this time the dox cannot get me back in rhythm. They zapped me 3 times 3/25/99 and now I'm planning on a new mitral valve in May. The doctor said I could try another med called amiodarone but after reading about it on the Net, I decided I would rather have a valve job. Amiodarone has a high occurance of really nasty side effects! Anyway, I'm still dancing, gardening, working and. On 4/16, I will have the cath to find out how soon my new mitral valve will get installed. Bless your hearts, Susan P. spower@apsllc.com
Ella R, April 7, 1999 - Hi, I didn't know such a place existed, great! I was looking for information on left branch bundle block which a doctor diagnosed 3 years ago. He said not to worry then but my arrhythmia is much more frequent and debilitating now. Can anyone tell me about it or where I can get more information about LBBB? I know it is not good to do but I took a minute dose of someone's Lanoxin when I felt terrible on vacation and it was amazing how soon I felt better. I did it several days when arrhythmia was bad, and it helped each time. I know I must see a doctor but just wish I had more knowledge before going. Thanks so much.
Candy, April 7, 1999 - Hi, I have a general question that someone may be able to answer. My rebab doctor stated I may have a benign tumor in my back that may require surgery. I know when I was first diagnosed with CHF he was very reluctant to consider it. Has anybody here had surgery after having CHF and cardiomyopathy? If yes, was the recovery time more difficult or were there any problems after? My rehab specialist is very good at explaining things but he doesn't really know the answer. He just works on my back, muscles and joints. I'd appreciate if anyone could answer my questions. GrPota@aol.com
Bill D's April 7 reply to Don T's April 6, 1999 - Hi Don, Welcome to Jon's Place! In addition to the forums, Jon has collected over 200 pages and links to information you should know about CHF. On the top of this page, click on Site Index. You'll find information about shortness of breath, what causes it and what you can do about it, CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and how we try to cope with CHF. From your post, it would seem that you are not seeing a cardiologist. Cardiologists, preferably specializing in CHF, are the ones to see! Don't stay with your Primary Care Physician. That's my 2¢! Bill. billdog@gate.net
Bill D's April 7 reply to Valerie D's April 6, 1999 - Hi Valerie, Welcome to Jon's Place. This is the best place to answer all the questions that your doctors don't have time to answer. Go to the top of this page an click on the words: Site Index. You should start by reading "The Manual." Then start burrowing in to all the information Jon has collected on CHF, the diseases that cause it, what you can do about it, how to evaluate your doctor, how long you'll probably live and interesting things like that! Here's my opinion, as a CHFer, on angioplasties and bypasses: These operations and procedures amount to a five billion dollar business for cardiologists and surgeons. I have had a 5 way bypass, innumerable balloon angioplasties, some with stents and some without, and none of them stayed open longer than one year! Every year a study is done comparing those invasive techniques to the non-invasive medication route. All the studies show that the death rate is higher for the invasive procedures. Every year the doctors pay no attention. Five billion dollars is a lot of incentive! Don't forget, find all about CHF under the words: Site Index. Bill. billdog@gate.net
Bill D's April 7 reply to Christine's April 6, 1999 - Hi Christine, Welcome to Jon's Place! This is a support group for all the people whose heart problems have precipitated Congestive Heart Failure. The symptoms are being tired all the time, shortness of breath and lots more. I would be very careful of any diet that says you can dispense with your insulin. I read Dick Quinn's book, "Left for Dead" and I think it's a lot of bull! <g> (If Mad Jack is around, I'll get an argument on that!) You didn't say what your ejection fraction was nor did you say you have been diagnosed with CHF. You are taking some of our medicines but not our important ones. Are you being seen by a cardiologist or by some other doctor? Your not being able to lie down might be being caused by retaining water. Have they told you to restrict your fluids and eat less than 2000mg sodium? Please check out the information Jon has hidden under the words "Site Index" at the top of the page. Bill. billdog@gate.net
Jack's April 7 reply to Christine's April 6, 1999 - Hi Christine, You need to be very leery of "alleged" doctors who claim miracles from special diets or herbal remedies. They can be dangerous and untrue. If they really worked, everybody would be using them because doctors are really only in it for the money and they could make more money if the so-called easy miracle fads were legitimate, but they are not. Anybody can write a book but that doesn't make the book or its claims true. If you want to continue living, just keep doing what you have been doing for the past 21 years.
Dick Quinn can swear by anything he wants to. There is no evidence that soy lecithin cyrstals do anything except provide a microscopic amount of nutrition. The claim that they can do an artery flush cannot be substantiated. Eating lecithin does not place a roto-rooter into your circulatory system. Cayenne is good and garlic is good but both of them are food. You can buy whole garlic for $2 a pound.You can buy powdered garlic and powdered cayenne for $1 for a 2 ounce container. Buy them. Eat them. They don't become wonder drugs when someone puts them in a capsule and charges you 50 ¢ for each capsule.
Hawthorne is a drug. It performs the same actions as prescription drugs. If you take hawthorne, it is exactly the same as taking 2 prescriptions that do the same thing but hawthorne is not controlled in it's purity. The active drug varies from plant to plant and bottle to bottle, no matter what unsupportable claims the manufacturer puts on the bottle. Taking it with your "real" medications can kill you. Jack. maddjak@hotmail.com
Marion G, April 7, 1999 - Hi, I hope I got everyone new to the board, anyway, Hi! I'm new too. I've been sick with CHF due to dilated cardiomyopathy and the cause is unknown, hence the term idiopathic. Thanks to all who wrote to me and welcomed me to Jon's place. I find it heart warming, a slight pun, to know I'm not alone with the problems I have. Today was one of those days where SOB was pretty evident but I know this is not a sign of impending doom. It must be something I either ate yesterday or the fact that I stayed up late to watch NYPD Blue. I also want to ask if anyone is still employed? I am still able to work part time at a pretty sedentary position. It is also low stress so I plan to work as long as I can. I finished cardiac rehab, which I had a love/hate relationship with, a year ago. Now, I basically walk and one night a week I still play volleyball. When I was sick with an EF of 20%, I was still playing till the night I went to the ER in heart failure. I've been playing for about 8 or 9 years. It's a fun league and they all know I have a bad heart. If I run into trouble, I stop. Actually, I stop before I have a problem but I just thought I'd stop by and say hi. Thanks for the warm welcome. Marion. MGodzik@aol.com
Kim S, April 7, 1999 - Hi everyone, I would like to know how many of us here receive Social Security benefits? Just recently I was informed that my case is being reviewed (it has been 8 months since diagnosis). At diagnosis I had an EF of 10%. My EF is now 40% after 8 months of treatment. I've read Jon's SSD page but I'm looking for everyone's personal experience. I do expect to be turned down. If I am, should I pursue it being that I now have an EF of 40%? I was preparing to work again after the birth of my baby. During my search for a new job is when I was diagnosed. Temporary Disability turned me down and we have been struggling financially for the past 8 months. Any comments are certainly appreciated! Have a great day. lalakimmie@aol.com
Julia H, April 7, 1999 - Hi, I am so relieved to find this site. I had a baby 10 months ago and was just diagnosed last week with pp cardiomyopathy. I don't have complete faith in my cardiologist and am going for a second opinion. I am in the Orlando area, in case anyone knows anyone here who specializes in CHF. How can I find out this info on my own? Just start calling docs? Thanks! Love, Julia. Juliahenry@aol.com
Jon's Note: See the Links page for support groups and finding a doc
Bruce S' April 8 reply to Marion G's April 7, 1999 - Hi Marion, I love to play volleyball, and do at church when I get the chance. The only thing is I couldn't play before CHF and I still can't play. I'm going to play golf tomorrow and my CHF didn't help this game either. Marion, it is good to see you can do these things. Thanks to you people who e-mailed me about gardening. I'll be getting back in touch soon. Everyone have a great day! baspencer@rtelco.net
Bill D's April 8 reply to Gail B's April 7, 1999 - Hi Gail, About the K-Dur giving you problems, I looked it up at the Mayo Clinic Site. Sure enough, down there in "Rare" was a side effect similar to what you described. I also found we should beware of digoxin and our ACE inhibitors! I've been taking them together for years! Maybe we should eat bananas all day long? <g> I found a big banana equals 7meq. Let's see, I take 20mq of K-Dur so if we ate 3 bananas a day, we'd get all the potassium we need! Welcome to Jon's Place. Bill. billdog@gate.net
Debbie R's April 8 reply to Marion G's April 7, 1999 - Hi Marion, I'm also very new here. I only got my computer about a month ago. Thank you all for making this such a great forum. Thank you Jon for all your work. I have learned so much from all of you, much more in the last month than in the last year since my full blown CHF attack that ended me up in the hospital for 13 days. Hospital food is the pits! Anyway, Marion, I was off work for 3 months after my hospital stay but the doctor approved me to go back to work on my birthday last year. On June 1, I was told I could go back to work. So I started out slow, 3 days a week and am now am at 4 days, which seems fine, and I think I may just stay at that. I am a hair stylist, which of course means standing on my feet but I try to give myself plenty of time for my clients so I don't rush too much. I've not been as careful with that lately. This is a good reminder to myself to watch myself more carefully. If we don't watch out for ourselves, no one else will.
I do have a question too. I am on a lot of the same meds a lot of you are on: Lasix, Lanoxin, Diovan, Coreg and Coumadin but I haven't seen anyone mention nitroglycerine. I'm taking 2.5mg twice daily. Is anyone else taking nitro? It cracks me up that I am taking something that in greater quanity will blow something up. Anyone wanting to correspond, feel free. Thanks. Debbiedo55@aol.com
Linda O's April 8 reply to Candy's April 7, 1999 - Hi Candy, I have CHF too, and last August had my gallbladder removed. I got along fine. I was scared and hated to go to sleep. It does seem to take a little longer to heal. I have scraped my skin and it also seems to take longer. Jack, I thank you for the good info and I miss your wit. Linda O, age 59, EF 24. norvalo@clarinda.heartland.net
Kristine Conner, April 8, 1999 - Hello Everyone, I am a medical writer who is currently working on a new educational Website on heart failure for the American Heart Association. The AHA decided to take on this project after receiving multiple requests for more extensive information about heart failure. I work with a medical communications company that has been hired to do the research and writing for the site.
We believe that the site will be much more effective if it actually features advice from heart failure patients themselves so I am seeking patients who might be willing to participate. If you're interested, please e-mail me with your best advice for other heart failure patients that deals with one of the following four areas: diet, lifestyle and exercise, treatment, and working with your physician. What one or two steps did you take that made a real difference in your condition? How did you make these changes part of your life? How might others benefit from your experience? What do other heart failure patients need to know about any of these four areas?
When you send your advice to me, please include your gender, age, past or present occupation, hometown, and date of diagnosis. Please also indicate whether or not you'd be willing to be contacted by phone. The AHA wants to feature about 5 or 6 patients, and hopes to include people of different ages and backgrounds. Therefore, we may not be able to use all the responses we receive. However, all of them will be used in some way to shape the information we include on the site as a whole. Please feel free to e-mail me with any questions. I look forward to hearing from some of you. Please help me (and the AHA) help others in your situation. Gratefully, Kristine. kconner@bellatlantic.net
Ben B's April 8 reply to Gail B's April 7, 1999 - Hi, I am curious if anybody else besides Gail experienced this excessive sweating and if it is a known symptom of CHF? For about a year from 1992 to 1993, I had extreme sweating, soaking my clothes even in cold weather. This happened almost every day, all the time. Of course, since I was stupid and not feeling any other symptoms, I didn't see the doctors. I have been wondering if this might have been an early sign of my heart problem. bdbrinkman@juno.com
Jon's April 8 reply to Ben B's April 8, 1999 - Hi Ben, I had the same thing not long before diagnosis with CHF. Once I started sweating, I could not stop, period. Jon.
Louise N, April 8, 1999 - Hi everyone, I haven't posted in a long time but I do read often. I was wondering if anyone else has had my experience with severe muscle aches after sleeping. Now I have had a constant headache for 5 days with no relief, except with a narcotic. I have a feeling it may be medicine related, although I have not had anything changed for 6 months. I currently take Digoxin, Lasix, 12.5mg Coreg twice a day, Tofranil, Xanax, Lipitor, HRT therapy, Vasotec and cyclert, plus CoQ10 and gingko biloba. I have had these symptoms for a long time but this 5 day headache is the worst. I am not even sure which specialist I should go to. Any suggestions? By the way, I have had ICDM for 5 years and a year ago, I decompensated and my EF was 10, it is now about 25. In answer to a post, I was able to get Social Security on the first round. confuzed45@worldnet.att.net
Jon's Note: Lipitor can cause headache, although if you've been on it for awhile without any, this may not be it
Lori Wilson, April 8, 1999 - Hi everyone, Just a short message to tell you that I'm home (actually I'm at my sister's house). My mitral valve replacement was successful - a 5 hour surgery. I was off the ventilator a few hours afterward and out of ICU within a day. The worst pain is the cracked sternum and a broken rib but everything seems to be going smoothly (knock on wood). Thank you for all the nice messages to Jeremy and me. I can't believe we're getting married in 9 days! I will be able to walk down the aisle, thank goodness. It will be a long recovery but I'm already on my way. Again, thank you all. Lori Wilson. lwilson@cdsinet.net
Joy R, April 8, 1999 - Hi, Since I have found this site, I have made many friends and hope to make many more. For those of you who don't know me, I have to infuse IV dobutamine for my heart in the daytime and infuse hyperalimentation in the night, thus I'm on IVs 24 hours a day but my quality of life is better for doing this so I won't complain. Like so many of you, I have DCM with CHF. It's just I didn't do well with medicines by mouth, thus the IVs but I didn't post to talk about myself but the others who have helped so many through this site: Jon, Ginger, and Bill D; Ginger for making another site and to Bill D, who must be the most compassionate and caring person for responding to so many others in need; Also to Vincent and Al M, who have helped me when I've had problems with this computer, and to Murph for e-mailing me inspiration. These are just a few of the wonderful people that post here and I am richer in life by finding all of you. My days are brighter now. Thanks. Joy R. wapalareme@aol.com
Marty's April 8 reply to Kim S' April 7, 1999 - Hi Kim, I'm usually pretty quiet on the board but I think I might be of some assistance with your SSD query. I was diagnosed with idiopathic DCM, CHF and chronic a-fib in 9/97. I worked then as a police officer but within 6 months I was placed on disability retirement. This process required me to go through the SSD process as well. At first I was rejected, as I think everybody is, it seems but I filed a request for reconsideration and I was fortunately approved.
The thing to think about is how does CHF affect you? In my case, I seem to be really stable as a rock but in exchange for stability I also seem to have zero energy. My limbs constantly fall asleep and I have increasingly significant discomfort with any exertion, especially as any particular day wears on. At one time I was a runner but now I try to avoid a flight of stairs. I am on the full menu of meds: Coreg, Ace inhibitor, etc, and my EF varies from 25 to maybe 40. The doc says my readings are skewed due to the a-fib interference.
I have tried to go back to work at various part-time activities as a trial work period. Each time I obviously exceed my body's activity comfort zone and I end up having to cut my hours way back. If I don't, I end up feeling absolutely terrible. What is left of my life is way too short for this! So, think hard how this disease is affecting you and place yourself in the rigors of work and see if you can do both the job and your own condiiton justice in the process. Marty. MartinBK@aol.com
Malcolm, April 8, 1999 - Hi, Just a note to compliment you on your site. I just discovered you today and think it's great. I have suffered from CHF for 8 years with the usual declining health. Glancing through these posts, I see most of us are asking "what else will help?" If anyone has any good news, please share it. Mac. macheath@nh.ultranet.com
Della R's April 8 reply to Kim S' April 7, 1999 - Hi Kim, You wanted to know if anyone is on Social Security. I am but not on Disability. I am old enough to just draw regular SS. I did apply for Disability in 1997 but was denied. At the time, I could barely navigate across our living room and stairs were out of the question. Any walking at all just pulled me to exhaustion and complete shortness of breath. Even shopping for groceries, I had to continually stop and lean on the cart or sit down and was tired all the time.
Early in 1998, my cardiologist changed some of my meds and also my regular doctor increased my thyroid medication, which he said was grossly insufficient. He also said that could be an underlying factor to all my heart problems. I can't tell you how much better I have felt. However, I only think it may have been the synthroid that helped but my other meds were changed at the same time. I don't experience the angina nearly as often as I used to, not that it doesn't happen because I have already posted last week my most recent experience with CHF. It was rough. I love my docs, they are the best. Many of us who get regular blood tests may think if we had a thyroid deficiency we would have been told. The test for thyroid is a separate test and has to be ordered as such. It is not just done automatically. It affects the heart, so we should be aware.
To Marion, I have returned to work full time but not to my usual work. By profession, I was a purchasing agent for a farm equipment manufacturer. I loved that job but it was totally stressful with a dozen crises a day. I took great pleasure in handling it all! It took a toll on me. I knew if I was ever able to work again it would have to be easy with no stress and be sedentary. I am now a transcriptionist, a job I hand picked. I love to type and no one bothers me, I only listen to recorded messages, don't talk to anyone (except at break and lunch, and I'm a happy camper. Someone posted earlier up there "Bless your hearts." I really like that. Take care and trust in the Lord. dellerdo@inw.net
Milo's April 9 reply to Mark E's March 13, 1999 - Hi, It sure feels good to be missed and that I am able to help people also is important to me. I hope all goes well with you and thank you for the compliment. Milo. via paulmcferrin@worldnet.att.net
Milo's April 9 reply to Jon's March 13, 1999 - Hi Jon, You sent down some research on angioplasty. The subject is Update/Exercise and Angioplasty/Vasodilators. The word in question is "restenosis" which is used 11 times, and I don't know and can't find out what it means. Please explain. Milo. via paulmcferrin@worldnet.att.net
Jon's April 9 reply to Milo's April 9, 1999 - Hi Milo, Restenosis is re-blockage. An artery that has been cleared out by angioplasty or bypass surgery but closes up later has restenosed. Jon.
Milo's April 9 reply to Bill D's March 12, 1999 - Hi Bill, That was a good one for a good laugh! Milo. via paulmcferrin@worldnet.att.net
Milo, April 9, 1999 - Hi, After reading many posts, I find that the most used coping method is faith. Whatever works, as long as we cope. If this is the most popular way of coping, than most of the posts are about faith. I agree completely with Jon's post of March 29. For those of us who want to actually debate with Jon about faith, fine, but e-mail him directly.
I do not believe in changing anyone's religion and find it a good way to cope. To degrade anyone's faith is mean. Those that do should give the matter much thought. To interfere with any coping method is cruel. It is not support, which is what the CHF board is all about. If atheists and agnostics find solace in what they believe, that is fine. Whatever works but religion is a very personal matter.
Milo. via paulmcferrin@worldnet.att.net
Jon's April 9 reply to Milo's April 9, 1999 - Hi Milo, People have faith in different things, creatures or persons. My own faith is in Christ Jesus as God's Son. Others may have faith in the god of a specific church or religion, or they may place their faith in a church or religion itself, in science, Kali, Buddhist philosophy, or something else. For what it's worth, discussion about the faith that sustains us is welcome here, but remarks that are backed by no thought are not. I welcome debating my own beliefs, if it is thought out and serious, but I prefer to do this by e-mail since I get pretty tired if I have to post double or triple the number of usual messages here. :-) Vagueness and anger rather than thought and debate has so far been the order of the day for critics of my own beliefs so I haven't bothered with serious replies. Jon.
Milo's April 9 reply to Gene W's March 7, 1999 - Hi, I thought valve problems were reversible by adding a new valve. I would think that exhaustion would make CHF worse. If shorter hours are required, have your cardiologist send a request for shorter hours to your boss. Milo. via paulmcferrin@worldnet.att.net
Milo's April 9 reply to Jeanette W's March 11, 1999 - Hi, You write that you have not really dealt with your problem. We can help you but we cannot do it for you. It is scary not only to you but for all of us and we all have our ways of dealing with our problems. There is much help for you here at Jon's Place. Perhaps you could start by reading The Manual, writing a bio and trying to cope. Please post more with the questions that are bothering you and we will do our best to answer them and support you in all the ways we can. You must face and accept your fears. When you wrote your post, you were on the right path. That was a first step. This board is also for venting feelings and anger. There always is anger. Sometimes a good cry can be very helpful in releasing many feelings. We are not faced with a big job but with a challenge. The greatest challenge of our lives, and we shall win, not to say we will be cured, but how we can cope and cope we do. We really want to help you. A bio will help us to know you better. Your age, EF and things about your family, all will help us help you. Humor is very important. Milo. via paulmcferrin@worldnet.att.net
Pat D, April 9, 1999 - Hi Jon and everybody, My story is bizarre. I was diagnosed with CHF in 1991 and advised I needed a transplant. After more extensive testing, they decided I didn't have it at all, and that my problem was allergies. Well, that was good news except I've continued to go downhill physically and last month, I was again diagnosed with CHF, Class 3. The probabe cause is cardiomyopathy, although I've had long-standing hard-to-control hypertension as well and I probably have sleep apnea. At least now I have an explanation for the way I feel. It's nice to know I haven't lost my mind! I'd love to hear from others as I'm feeling a bit overwhelmed right now. Since I was once told I had it and then didn't have it, my family is dubious about the current diagnosis, so I'm also feeling a bit alone as well. I can't really blame them but I have no doubt that I have it because I live in my body and it's not fun. I'm glad I found this place. It's helpful to know others understand. Pat DeLeon. patj98@yahoo.com
Jamie S' April 9 reply to Lori Wilson's April 8, 1999 - Hi, I am very happy that your surgery went so well. I hope that the recovery is fast. Congratulations on the wedding, it will be beautiful. April 16 is our 5 year wedding anniversary. My best to you and your family. Jamie.
Gerald Fansler's April 9 reply to Debbie R's April 8, 1999 - Hi, Boy do I take nitro. I wear a 0.8 per hour patch and take 3-4 when big exertion is coming up, like the Nordic track for 12 minutes or a load of compost from the back to front. I don't enjoy angina but I know it's ahead when exertion is called for or any kind of extra effort. Some days nitro gets me up a hill and other days I just slow down and take it steady but under the angina pace. I wear the patches at night if I want to lay down. Without my patch, I spend the night in a chair; too much fluid on my lungs will cause the same problem and I take a second 80mg of Lasix. If I'm still swollen and holding fluid, I take zaroxolyn. glf25685646@msn.com
Jill S, April 9, 1999 - Hi, I don't post often but I'm an oldie here. I have started Coreg at a very small dose in the past 6 months after an unsuccessful attempt earlier with this drug. I have IDCM with an EF of 28%. I have normally low blood pressure and will probably never tolerate anything but the minimally effective dose, which I believe is 12.5mg twice a day. My blood pressure is staying in the acceptable range but I have gained 10 pounds! My cardiologist and I don't believe this is water retention since I am not having the symptoms of SOB and coughing that I was when first diagnosed. I think it is just fat! Has anyone else had this problem? Also, I wake up hungry a lot, which is definitely not normal for me. Thanks for your input. jilschro@jps.net
Mac, April 11, 1999 - Hi Jon and everybody, I have noticed a lot of us are having problems with angina. I have used the patches as most of you have, but for the last 2 years my doctor has me taking 30mg of Imdur. This is a common drug used to treat angina (long lasting nitro), and in my case has pretty much solved the chest pain problem. He started me on 10mg and worked up from there. I still can barely walk across the room without losing my breath but the angina is much less. If I can be of help to anyone please e-mail me. I've had CHF for 8 years and know it's no fun. Talk to ya later. Mac. macheath@nh.ultranet.com
Jana B, April 11, 1999 - Hi, I am new here and to CHF and DCM. I was diagnosed 2 months ago, with an EF of 21%. I am on Coreg and all the other normal stuff. I am 35 years old and they don't know what caused all this in me. I have 2 questions: I didn't have enough work credits to get SSD because most of my work history was with the county and apparently they don't pay into SS. Since I am no longer employed by the county, I can't get their Disability and for the last 3 years I have been self-employed, not making much though. Is there any other sort of Disability payments out there? I dont qualify for SSI.
My next question is this: What is it with our unbelieving families? My siblings don't believe I am sick and I don't think my hubby did either till the doctor called him. There are not enough days left in life for me to worry about what my family thinks, but sometimes - like when they dump kids off at my house - I get sooo mad at them for not understanding that I am sick! Some days are better than others but when I am sick, I am sick! I have gotten absolutely no support from them. They just keep saying "the doctors don't know what they are talking about." I go May 6th to UCLA to meet the heart transplant team. Sometimes I think that when I die, they will believe me but I have total faith that God is going to heal me. I am glad I have finally found a place that understands. Jana. JByers4u@aol.com
Marty's April 11 reply to Jack W's April 10, 1999 - Hi, Your post made me feel so sad for you and your family. However, your father has to be an extra, extra special person. Your family is blessed by him. As you say, disease is relentless and life so fragile and precious; a fundamental message lost on the healthy until their turn comes. My prayer for you and your family are for the filling presence of the Holy Spirit, to assist you through this time of agony. My prayers are with your mother, may she find true peace. God bless you! Marty, DCM, EF 30. MartinBK@aol.com
Doug K, April 11, 1999 - Hi all, It's been awhile since posting again. I've been switching over to a new ISP and what fun that is! I just thought I would notify you of the change in e-mail address. It is douglas.knuth@gte.net although I am sure that it will be at the bottom of this message as well. I am doing pretty well right now, as far as my heart goes. My TIAs have stopped with the Coumadin but I go Tuesday to a Glaucoma specialist as my optometrist has seen optic nerve damage. To Luc, I hope you are feeling better today! Best to you Jon, and your family. I hope you all have a good day. douglas.knuth@gte.net
Christy Marshall, April 11, 1999 - Hi everyone, I just found this Website yesterday and I am driving my family nuts by refusing to get off the "stoopid pooter." They will be relieved to know that I have read the entire page and reviewed most of the links by now and can once again be a part of society! Thank you Jon, for this site, and to everyone here, interacting and sharing experiences. Until finding this site, I was feeling sorta alone out here.
I was diagnosed with DCM on my 41st birthday, 6 weeks ago. The only reason they found it was because I had a series of TIAs (like 6 of them over an 8 hour period) where I lost my ability to communicate. I couldn't speak or type coherent words, sentences or ideas but I could think them! To complicate this, I was flying out of town on business, so the episodes were while traveling. I never thought I would be thankful I had the TIAs but it seems these were early warning symptoms of DCM and probably prevented me from going into chronic CHF. My EF is 30%.
Again, I feel fortunate the place I was traveling to was Denton, Texas, which I later found out is a leading area in cardiological medicine. In the emergency room, they performed x-rays, ECG, CT scans, Heparin IV and blood work. Upon admission, I received an echocardiogram, thallium stress test with MUGA, MRIs, MRAs, constant blood work and started on what seemed to be a multitude of drugs. I got a lot concerned when out of the blue, 3 nurses dragging a crash cart careened into my hospital room. I was on the phone and startled. They were staring at me with their jaws on the floor. I had just had a recorded non-sustained VT and they figured I'd be passed out on the floor. I didn't even feel it. When I returned home, I had a 24 hour holter monitor which still recorded VTs. I submitted to an EP test 3 weeks ago, resulting in a dual chamber defibrillator.
It's been a pretty crazy 6 weeks for myself, my significant other and my 7 year old son. So today, I've got more questions than ever. After reading the bios and posts, I'm now very concerned about what will come next. It's odd to me that I have no pain but I've been exhausted, breathless and dizzy, presumably from drugs and low blood pressure (100/60). I'm currently on Coumadin to prevent additional TIAs or stroke, Lasix, Lanoxin, Coreg, Klor-con (potassium) and Prinivil. My doctor suggested changing from Coumadin to aspirin therapy in 6 months (yippie!) but it's a wait and see thing. Being on short term disability, I have returned to work 4 hours a day.
Am I being realistic that I can work full-time again? I work as a manager of computer systems in a corporate environment; hardly stree free. If anyone has been successful or unsuccessful at returning to work at a stressful job, I'd be very interested. Lastly, I can't get the cardiologists to talk about vitamins. I'd love to hear experiences that folks have had. I currently take a multivitamin with minerals, 1000mg calcium, 1000mg C and 400IU E and B complex with folic acid. I've been researching CoQ10 but would love some advice about dose. Sorry this post is so long. Thank you all for the pearls of wisdom and experiences you are sharing with everyone. breezip@hotmail.com
