The paperwork never ends The Archives
March 1-15, 2000 Archive Index

Stephan J 3-1     offering participation in a study to CHFers
Jon 3-1     about me & the supplement
Frank S' 3-1 reply to Victoria's 2-28     grieving
Dave K's 3-1 reply to Billie Jo C's 2-28     the Disability process
Joe S' 3-1 reply to Jon's 3-1     can salt & spice cause high chest pain?
Lydia M's 3-1 reply to Jon's 3-1     seek advice dealing with colds & flu
John Len's 3-1 reply to Dave K's 3-1     SSD is pretty erratic
Sandi M's 3-2 reply to Doug K's 2-29     really like your post & more
Katie D 3-2     transplant experiences
Bill D's 3-2 reply to Joe S' 3-1     here's what Jon meant ;-)
Phyllis A 3-2     my book is out now!
Dave K's 3-3 reply to John Len's 3-1     Social Security Disability
Karen O 3-3     had a stroke, just starting recovery
Jon's 3-3 reply to Karen O's 3-3     me, I'm too dumb to know better
Ruthie A 3-4     need some advice about support group
Jon's 3-4 reply to Ruthie A's 3-4     for what it's worth
Jean C 3-4     coping
Carolyn B 3-4     pine bark & more
LeeAnn D 3-4     Coreg & blood sugar question
Ginger 3-4     hormone replacement therapy questions
Joe S' 3-4 reply to Dave K's 3-3     that's asking quite a bit
Pat L 3-5     still here, still going,...
Donna Z's 3-5 reply to Ginger's 3-4     hot flashes & more
Donna Z's 3-5 reply to LeeAnn D's 3-4     controlling blood sugar
Bill D's 3-5 reply to Donna Z's 3-5     it's not easier, just different
Robin Lynn 3-6     meds questions & more
Karen's 3-6 reply to Ruthie A's 2-29     recliner a possibility instead of lying down
Joe S' 3-6 reply to Pat L's 3-5     just keep on keeping on
Carol W's 3-6 reply to Karen O's 3-3     the Lord keeps us going
Victoria 3-6     thank you all
Dan 3-6     update, meds & defibrillator questions
Linda O's 3-6 reply to Karen O's 3-3     glad you're back, to Ruthie & more
Felix O 3-6     questions for CPAP users
Sharon J W 3-7     update, birthday
Lydia Moore 3-7     can Coreg cause doom & gloom feelings?
James' 3-7 reply to Lydia Moore's 3-7     Coreg dose & symptoms
Leland Y's 3-7 reply to Pat L's 3-5     anniversary congrats & ongoing list
Cindy M's 3-8 reply to Leland Y's 3-7     heart talk
Jon 3-8     back soon
Jon 3-11     made it
Donnie 3-12     update, Coumadin questions & more
Jon's 3-12 reply to Donnie's 3-12     Coumadin, pacemakers & more
Bev 3-12     just diagnosed
Rob M 3-12     seek heart docs on west coast
Gus R's 3-12 reply to Bev's 3-12     welcome to the club
Jack's 3-12 reply to Jon's 3-12     Coumadin use in CHF
Jon's 3-12 reply to Jack's 3-12     Coumadin use in CHF
Phyllis A's 3-13 reply to Bev's 3-12     welcome to our corner of the Web
Bev's 3-13 reply to Gus R's 3-12     it's been a bit overwhelming
Linda Grant 3-13     prayer request
Joe S' 3-13 reply to Bev's 3-12     relating causes to their effects
Sal Ricca 3-13     seek EECP info
Ted 3-13     update, had cath, found graft blockage
Tim 3-13     intro
Ginger 3-14     hi everyone
Jeanette W's 3-14 reply to Tim's 3-13     be sure to ask, ask, ask
Bev's 3-14 reply to Jeanette W's 3-14     thanks & more
Jackie S 3-14     some good news!
Tim's 3-14 reply to Jeanette W's 3-14     some more intro
Pam 3-14     intro, meds questions & more
Art 3-14     looking for Kathe
Ruthie A 3-15     update - good news & more
Tim B's 3-15 reply to Pam's 3-14     hang in there
Joe S' 3-15 reply to Jackie S' 3-14     that's fantastic news!
Carol W 3-15     coping, resources that help
Tim B's 3-15 reply to Ted's 3-14     coping
Rieale's 3-15 reply to Pam's 3-14     diuretics, tests, CHF info & more
Rieale 3-15     online phone calls
Jana B 3-15     uplifting messages
Helen O 3-15     I'm back! update & more
Jerry V 3-15     can Coreg be taken once a day?
Jon's 3-15 reply to Jerry V's 3-15     beta-blockers dose & timing

Stephan J, March 1, 2000 - Dear Readers of Jon's web site, Jon's web site has been instrumental in directing the company I work for - Nutricia - in the development of a nutritional supplement designed especially for patients with heart failure. Nutricia specializes in special nutrition such as baby food, clinical nutrition such as inpatient tube feeds, and other specialized nutritional products.
     In the past 2 years, we've been working with cardiologists and nutritionists to develop a product specially designed to help patients with heart failure. Your input, by way of us reading Jon's site, has been very valuable. We are doing trials of this product - called MyoVive - in Canadian and American centers.
     We are also doing what we call a surveillance study: the MyoVive Market Surveillance Study or MMSS, guided by a committee of 5 cardiologists from heart failure clinics in New York City. More than 300 physicians in New York and Florida are giving vouchers for a free one-month supply of MyoVive to their CHF patients as part of this study.
     Jon said it was ok for us to offer such a voucher to any reader here who is interested. It entitles you to a one-month free supply of this CHF supplement, MyoVive. If you are interested, please call 1-877-Myo-Vive and refer to this e-mail to order a Myovive Study voucher, or e-mail us at and order your MMSS voucher. We recommend that you fill out the voucher with your doctor. You will be briefly interviewed by phone for the study, before using MyoVive and after having used MyoVive for 4 weeks. In case of any questions, just call 1-877-Myo-Vive and touch 2 or 3.
     Your participation will be very appreciated, since it will help us in improving MyoVive. Sincerely, Stephan Julsing, Director Nutricia, New York office.

Jon, March 1, 2000 - Howdy-doo everyone, I want to elaborate on Stephan's post. I did not actually help Nutricia formulate MyoVive. They read this site regularly for over a year, especially The Beat Goes On, to get input on what real CHFers consider important in a heart supplement. However, thanks to their generosity I have taken the supplement myself for at least a couple of months now. I don't do product endorsements and don't plan to start now, but obviously I believe in some supplements for helping heart failure.
     One reason I won't come right out and endorse this product is because (as is shown clearly at the top of my supplement pages at Nutrient Stew), Stephan offered me an unrestricted grant when he read my post about this pooter's hard drive conking out on me. By adding this grant to your donations, I managed to order an actual new computer, instead of patching another one up piecemeal. So, to avoid any appearance of prejudice, I won't say much about this supplement. Check it out for yourself. To my surprise, Stephan gave me - in writing - assurance that the grant could be used any way I chose as long as it went toward running this site.
     It's not often that you get a shot at actually influencing what the final formula of a CHF supplement will be. I think it's worth the time. I helped Stephan rewrite some of the questions for the "surveillance study" so hopefully it won't be as much of a pain as such things tend to be. If it is, you can blame me as much as anyone. ;-)
     On another topic, I apologize for being cranky lately. I hurt my lower back a couple of weeks ago and then injured my upper back a couple of days ago. All this happened right when I had sworn off painkillers entirely to clear out my system. What timing, huh?! Being me, I'm too stubborn to go back on the painkillers until my back heals up, so I've been a bit testy. Jon.

Frank S' March 1 reply to Victoria's February 28, 2000 - Hello Victoria, Thank you for sharing your grief with this forum, and with me in particular. Even though my Mother shed her mortality on April 1, 1987 (yes, April Fool's Day), I still think about her on a regular basis and will continue to do so as long as I live. None of my siblings cried like I did, and I was terribly distraught for some time after her death. You will never get over it nor should you, because your expressions quite simply tell how you feel, and it is most helpful for you to express your emotions as eloquently as you have done. I finally figured out that the one who could help me the most to deal with life after my mom was my mom. May she rest in peace. Frank Smith.

Dave K's March 1 reply to Billie Jo C's February 28, 2000 - Hi, Don't worry about the 180 day waiting period. You should apply, then they will turn you down. That will take up about 60 days. Ask for review and they will send you for an exam. Then they probably will turn you down again unless you were hit by a truck in the meantime. Then you see the attorney and he will file for a hearing. At that point, your 6 months are gone by. In my case, when we applied for a hearing, the review board passed me. I was paid in month seven. If you wait to file, it still takes 6 months to go through the appeals, etc,... There is no avoiding the original 6 month waiting period. Good luck, Dave.

Joe S' March 1 reply to Jon's March 1, 2000 - Hi Jon, Testy? I sure haven't noticed anything different. You're the same Jon we've always known. :-) Hey Jon, we're all entitled to be testy once in awhile, don't worry about it. I have a big question for you or anyone. Last night was one of the worst ones I've had in months. I had horrible upper chest pain and horrendous aches in both arms. It wasn't like heart pain because it was too high in the chest, just below my throat. I did some detective work and found out my visiting sister-in-law had put Lawry's seasoning salt all over a roast she fixed. I don't know what question to ask, but the pain was too high to be heart related, what else could it be? What can I do when this happens? I also found out they have been adding tons of bad spices to the foods they fix. Joe Stevenson.

Lydia M's March 1 reply to Jon's March 1, 2000 - Hi Jon, I am sorry to hear about your back and will keep you in my prayers. It's hard when one has CHF and then has to deal with other complications. I have had a very bad chest and head cold. This is the first time I have taken ill since my diagnosis last May and it can be tricky. I was wondering if there are any do's and don't's for CHFers with a bad cold or flu. I know we have to watch our fluid intake, which is usually the opposite with people with no heart failure. Do you have any suggestions? It would be greatly appreciated. I also know it seems to take twice as long to get better. Thank you and God bless, Lydia.

John Len's March 1 reply to Dave K's March 1, 2000 - Hi Dave, You never know. I think a lot depends on location and who the reviewer is. I got my approval so fast I had to shut my business down instantly even though I expected to be turned down a few times like everybody else. John.

Sandi M's March 2 reply to Doug K's February 29, 2000 - Hi Doug, I just have to write to say how heartfelt your post to Victoria was. Your words were so kind and gentle. You have again shown how this site is so helpful to all of us. I make myself read the posts every day, even when I don't feel well. It is like being with a big family a few minutes a day. Jon, I'm sorry to hear about your pain. It's ok if you get cranky now and then, we all do. I hope you will feel better soon and not have to go back to pain pills. God bless, Sandi.

Katie D, March 2, 2000 - Hi Jon and Fellow Readers, A few weeks ago the discussion was about transplant. I found it hard to join in the discussion because I have been waiting over a year for a heart. In mid-February, a friend I made while waiting in the hospital got a heart, who had been waiting over a year also. I can tell you anything that can go wrong, did for him. It was a continuing battle. Tonight I received this wonderful mail from his wife and just wanted to share it with you.

"We just can't get over all the good things that are happening and we cannot help but share all this with you. We are amazed that we have had more good days lately than bad. It just seems strange. We certainly feel as though God has just opened up the heavens and poured out blessings upon us. We realize what a great part you all played in that.
     Mike is getting better in so many areas and so many ways. All the doctors that come in the door have something good to say about Mike's progress in their area of care. Whether it is his kidneys, white blood count, physical therapy, his eye, rejection, the new heart, BP, nutrition, whatever it is, they all are impressed with his progress and they all are hearing us thanking God.
     We know the short term plan right now is to keep doing what we are doing and for Mike to continue to get stronger and healthier. The long-term plan is still a little hazy but we will be hearing about that in the next week or so. We feel as though we are winning some of the battles and that makes the fighting easier. I am reminded of Paul's words in Romans 8:31, 'If God be for us, who can be against us?' With all of you, well what can we say? We are truly blessed and we cry in joy for the love that has been poured out upon us on an hourly and daily basis."

     There is hope.

Bill D' March 2 reply to Joe S' March 1, 2000 - Hi Joe, Joe and Sandi, When Jon says he was "testy" it means he wrote a couple of e-mails that burned out the recipient's mother boards! <g> In admitting it on the forum, he's apologizing to anybody that got one. There's nothing bashful about our Jon! Bill D.

Phylis A, March 2, 2000 - Hello Jon and Friends, I hope everyone is well as can be expected. I hope you can remember me telling you about a year ago that I had written a book about my bout with breast cancer. We believe that radiation therapy caused my heart failure and myopathy. Well, it is complete and if anyone would like to purchase one they can e-mail me for the price and all. Most of proceeds are going to the American Cancer Society to help those who can't afford treatment. If sales are good, the rest will go to having more copies printed. Just doing some of the good Lord's work and giving back. Thanks, Phyllis A.
     PS. My e-mail address means phyllis cancer survivor.

Dave K's March 3 reply to John Len's March 1, 2000 - Hi John, Not to be too picky but my point was that the 6 month wait is unavoidable. It's best to start now rather than later. That way, the 6 months go by while application is processed. You are right that it depends on location. If you draw someone who reads and writes, you have a better chance. <g> Dave.

Karen O, March 3, 2000 - Hi Jon, How are you doing? I've been out of commission for awhile but I am returning. I managed to suffer a stroke a few months ago but with God's help, I am getting back my motor skills. My CHF isn't doing as well, however. I am pretty much limited to being up in a chair for an hour or so. I can't do a whole heck of a lot of anything physically but thank God I am still here. I'm on home oxygen because my breathing is so poor, but I am breathing.
     I wanted to share a message I received in a card not long ago, when I was down. Maybe it will help some of the others. "When life is especially difficult, the way it has been lately, it's hard to believe sometimes that there is happiness waiting for you in the future and that there are still reasons to hope and dream, but there are." If this helps one other person I will feel like I can still be of some good use. With God's help, I will try to stay in better contact, as I had done before. Thank you for still being here. God bless.

Jon's March 3 reply to Karen O's March 3, 2000 - Howdy-doo Karen, It's good to hear from you! Sometimes, when I am wading through medical trials or page rewrites, validation, searching out other sites of use and so on, I wonder why this is what God wants me to do. Then, abruptly, I get it! It's because I'm too dumb to step back and say, "Wait a minute! I can't do this." <lol> By the time I realize what I've bitten off, it's too late to do anything but go forward. Hang in there, Karen. We're all pulling for you. For what it's worth, it doesn't matter what shape you're in, God can use you as long as you want Him to; I tell you true. Jon.

Ruthie A, March 4, 2000 - Help! I have been asked to help our church's counselor to start a support group for those with chronic or terminal illness and their caregivers! I have no clue on how to begin. Does anyone have any suggestions? Please e-mail me. Thanks. Ruthie A.

Jon's March 4 reply to Ruthie A's March 4, 2000 - Hi Ruthie, You just can't sit still, can ya?! <lol> I've never even been to a face to face support group so take this with a shaker full of salt but here are a few tips from creating and maintaining an online support group of the same nature:

Jean C, March 4, 2000 - Hi Jon and Karen O, Thanks for your wonderful, encouraging thoughts. My CHF is not near as bad as most others or yours, and I find this forum truly supportive in my not-so-difficult life. Jon, I hope your back gets better soon. An aching back is almost worse than aching feet when your car is 1 1/2 blocks away. Good luck with the new computer. We are looking forward to it but be cautious; God may have even more planned for you to do now. After all these years, I've figured out that God stays one step ahead of me. Happy Spring to the whole forum family.

Carolyn B, March 4, 2000 - Hi, I have been trying to catch up on the posts lately and have been following the comments on herbs and supplements. I just read some of the Nutrient Stew again. Wow, good stuff! I have 2 teens with DCM whom I have on a blend of grapeseed extract and maritime pine park. I know St. John's wort can cause problems with transplants. Is there any information on the pycnoganols? My kids have been on it for about 6 years. I recently cut back on the stuff, and my older daughter says she feels a huge difference. She feels very tired. Any input? Comments? Thanks!
Jon's note: It may thin the blood. See this article

LeeAnn D, March 4, 2000 - Hi everyone, I caught up on all the posts again tonight. Lately I seem to be a weekly reader! I have a question for anyone who may have high blood sugar relating to Coreg. I haven't been tested yet but I have a feeling my sugar is high, and I'm wondering if it can be controlled with diet. Don't worry, I'll check with my doc, I'm just curious in the mean time. Are actual sweets, or starches worse? LeeAnn.

Ginger, March 4, 2000 - Hiya's, This is mainly a question for women but if any of you guys wanna answer this, that is cool! <g> I would like to know if any of the women here have dropped their Premarin or HRT, and switched over to other natural forms of Estrogen. I have. I switched from Premarin to Soy Isoflavones. It is supposed to have the same heart benefits. I am curious to know if anyone else has gone this route. Stay well ya'll and see ya's at chat when I can. Still doing the hospital runs with my brother so my time is scattered. Hugs, Ginger.

Joe S' March 4 reply to Joe S' March 3, 2000 - Hi Dave, Boy you sure are demanding when you want those SSA people to be able to read and write! Where I used to live, in Santa Barbara County, I had a hard time finding one who spoke English. <g> Despite this, the good Lord looked out completely for me 'cause I received maximum state disability the second week after I was diagnosed and everything else right on track. I even got SSI 6 months after applying. Of course, it was only $28 but who's counting? I can now live on what I get from Social Security. I had to move to where the cost of living was a lot lower; a gorgeous valley in the eastern Sierras. What a sacrifice?! <g> I'll make a sacrifice like that any time. Joe S.

Pat L, March 5, 2000 - Hi Jon and everyone, While my EF has been nosediving and is now below 20% after peaking at 53%, I've been making changes again, but realized an important date (to me) is coming up. On March 12 of 1995, I was diagnosed in with CHF and DCM. I did not know what either one was. The doctor kept looking at my echo results and saying, "Significant damage," and shaking his head. Within a month, I had educated myself somewhat via computer and books and realized that with an EF below 20, I had a poor diagnois and pretty much reconciled myself to about 18 months of life expectancy. Well, come March 12, it will be 5 years and I'm still going strong (well, close) and have done many things in these 5 years that I never did before! I plan to live to my normal life expectancy at this point, so I am wishing myself a happy anniversary next week! Pat L.

Donna Z's March 5 reply to Ginger's March 4, 2000 - Hi Ginger, Before I was diagnosed, I had terrible hot flashes (you men have no idea how lucky you are) and was on a very low dose birth control pill just for the hot flashes.When I was diagnosed with DCM and CHF, I stopped taking it. Then while I was still in the hospital I developed a blood clot after treatment for the fluid in my body. I just decided not to take them any more because of the possibility of clots, even though I'm now on Coumadin. Now I'm using a calcium supplement with soy in it and am no longer having any problems. I'm presently taking Caltrate 600 + soy. My gynecologist thought I needed to be taking some calcium and vitamin D to prevent bone loss. I do intend to speak with my transplant doctor about all this the next time I see her since I forgot to mention all this to her last time I had a appointment.

Donna Z's March 5 reply to LeeAnn D's March 4, 2000 - Hi LeeAnn, Depending on how high your sugars are, you can sometimes control it with just diet and exercise. I take 5mg Glucatrol XL per day and my sugars are still running high in the morning. I will be going to an endrocrinologist to see what else we can do. You have to watch your carbohrdrates when you are a diabetic, such as starches, breads and so on. Most people think as long as they stay away from sweets they will be ok, but they're wrong! You have to count and control carbs. There is a link between Coreg and blood sugar levels. Just remember everyone's body is different so it might elevate one person's blood suger and not someone else's. Please check with your doctor.

Bill D's March 5 reply to Donna Z's March 5, 2000 - Hi Donna, Hot flashes and "you men have no idea how lucky you are?" I don't know about that! <g> Rosie sits fanning herself and sweating like a pig but it can't compare to prostate problems. There's nothing quite like it when you know you have to pee but can't! Down you go to the ER where they do unmentionable things that hurt. OooooooEeeeYow! <g> Bill D.

Robin Lynn, March 6, 2000 - Hello to everyone on this site, Jon, I hope your back problems are much better by now. I don't get a chance to post too often but I try to keep up with all the posts here and want you all to know that I keep you all in my prayers. I have always been very proud (for lack of better word) of having normal blood test results, especially in the area of my cholesterol levels. Well, 2 weeks ago I had my blood work and I now have a supposedly rare type of hyperlipidemia. My doc says that it just means that I still have a heart problem (duh!). My bad cholesteral is within normal limits but my HDL is too low and my tryglicerides are way too high compared to the other levels. I have been put on yet another med called Lescol, which made me really sick for awhile but I toughed it out and am now feeling better.
     I would like to know if any of you have this same problem and if anyone knows if it could be caused by taking beta-blockers? Also, I take Lanoxin tenormin (beta-blocker). I recently read that this combination is not recomended. Is anyone else on these meds and do you have episodes of extremely low heart rate and a flushed feeling? God bless you all. Robin Lynn, DCM, cardiac spasms, CHF.

Karen's March 6 reply to Ruthie A's February 29, 2000 - Hi, Sometimes I have a hard time lying down also. I have an AICD and often have to sleep in a Lazy Boy recliner. Have you checked with the thrift stores, garage sales, newspapers to see about finding one that way? I found one for about $20 in excellent condition. I haven't posted here before but I do read these posts daily. I want to thank you Jon, for this site and for the good work you are doing.

Joe S' March 6 reply to Pat L's March 5, 2000 - Happy anniversary Pat, Let's see you celebrate at least 10 more fifth anniversaries. Hey, I've gone 56 years with a bad heart so anyone can. Joe S.

Carol W's March 6 reply to Karen O's March 3, 2000 - Hi Karen and everyone, Where else but The Beat Goes On will you find someone saying that "my breathing is so poor, but I am breathing"? Praise the Lord, we are all breathing today. Who we are, where we are, how we are; It goes better if we give it to our Lord. We may not be well but we live in His grace. God bless you all today.

Victoria F, March 6, 2000 - Hi, In February my mother passed away. My sisters and I spent 4 weeks at her bedside caring for her with the help of hospice. I came back home to Virginia very depressed and feeling like an orphan. Since I have heart problems, I knew of Jon's site and have been an almost daily lurker (best site on the Web) and found myself here asking for prayer for myself and our family over the loss of our mother.
     Well, as I was writing the message I kept reminding myself that this forum was for heart problems support and not a forum for grief support but somehow I just knew the Lord wanted me here to ask for help, so I submitted the message. Well, what followed was such a blessing to me because so many people on this board opened their hearts and e-mailed me to help ease the pain. Yes, this is a board for heart support but it goes beyond that, I believe. It is also a place to share things of the heart because many times medication can't change, repair or mend hearts but the human spirit can do just that by offering love, support or a listening ear.
     I mentioned to some of you when I responded to your e-mail that since my mother died I have felt like a child who had let go of her mother's hand and got lost and couldn't find her but I now realize that the Lord has sent me other people's hands to hold onto and because of Him and you, I don't have to walk alone. I am so very grateful the Lord laid the construction of this site on your heart Jon, because in doing so, others have been blessed more than you will ever know! I pray that all of you, regardless of your health or circumstances, will have comfort, joy and peace because these are the things that you have given me. God bless, Victoria.

Dan, March 6, 2000 - Hello everyone, It has been awhile since I last posted. I have a question for everyone. My doctor switched me from 25mg Cozaar twice a day to 150mg Avapro once a day. On the second or third day after the switch, I passed out. After I woke up, I got the ambulance ride to the hospital and I was admitted. For the first time, I felt what heart palpitations were like. The next day I had 2 episodes where my heart went up to 200 beats a minute. I did not pass out however. My doctor said the med switch was only a coincidence. I insisted on going back on Cozaar and have not had any problems. If anyone has any info on this, it would be appreciated. They also put a defibrillator in me. If you ever get a defibrillator or have one, be careful of a drug called Betapace. My doctors put me on that and it caused me to pass out twice and it caused my defibrillator to be ineffective. I came through those 2 incidents, obviously. I am searching for answers. If you can help, post or e-mail me. If you need more info, ask. God bless all of you. Dan.

Linda O's March 6 reply to Karen O's March 3, 2000 - Hi, It was so nice to see your name in the posts again. I am sorry you have had so many troubles. Hopefully, it will be all downhill from now on. Did you go to the Cleveland Clinic for this problem? It is nice to have Bill and his cleverness back. I hope Ruthie finds a good chair but please be careful; some of the recliners aren't the best for the ol' back. I am sorry for your suffering, Jon. The magic word for back patients is patience. Sometimes it is hard to wait for healing. I admire you for not using the pain pills. It would be easy to swallow them. Linda O, age 60, EF 24.

Felix O, March 6, 2000 - Hi everyone, I have been on CPAP therapy for a year now. The results have been remarkable. I am starting to think sleep apnea was the underlying cause of my heart disease. I have a question for other CPAP users. How often do I need to have the CPAP settings adjusted? How often do I need to have a sleep study done?

Sharon J W, March 7, 2000 - Hello everyone, I pray that you're full of peace, despite your everyday struggles. I read every post but am doing so well, except for my defibrillator zap - "treatment," my doctor calls it - last week. It wasn't as bad as I expected. Happy birthday to me!

Lydia Moore, March 7, 2000 - Hi Jon, I hope all is well with you. The last couple of weeks I have been waking up with a very bad doom and gloom feeling. It is frightening to say the least. It feels like I am detached from myself. I have had my Coreg dose increased and was wondering if this could be the cause. Please let me know if you have any insight into this. I would appreciate it. I hope your back is doing better and I wish everyone on the forum peace and love. Lydia Moore.

James' March 7 reply to Lydia Moore's March 7, 2000 - Hi, I have also been on Coreg since last March. By May I was up to the highest dose and felt terrible. In August they reduced it by half and I felt much better for several weeks, then it seems as though it was poisoning my system again. It was cut in half again and today I feel ok - not good - but much better than when I was on higher doses. The higher doses brought my BP down to 70 over 50, and that was just too low for me.

Leland Y's March 7 reply to Pat L's March 5, 2000 - Greetings! I'm so happy to hear about your fifth year anniversary. March 13th will be my first CHF anniverary and I look forward to 4 more years so I can brag about it also. It looks like you and I will celebrate it together this year, and hopefully many years more. To the other "newbies" at Jon's Place: The heart has encompassed many facets of my life since March, 1999 but I have come about and realized these meanings more than once this past year:

  1. lion-hearted (courage)
  2. a heart of gold (kindness)
  3. by heart ( memory)
  4. take heart (encouragement)

     Does anyone else care to add to this list? Luv & salutations. Leland.

Cindy M's March 8 reply to Leland Y's March 7, 2000 - Hi Leland, I have also noticed how often the word heart is invoked in our language. Here are a few more:

  1. heartfelt - sincere
  2. have a heart - compassion
  3. take to heart - with deep concern
  4. know it in his heart - one's innermost character or feelings
  5. never lost heart - courage
  6. the heart of the matter - the most vital part

     Warm regards, Cindy.

Jon, March 8, 2000 - Hi everyone, Well, I am going to take a few days off to get this new pooter set up and properly functioning, and to make proper backups of everything for a change. This will take awhile so I would guess I'll be offline until roughly Sunday or Monday. If you have something truly urgent, you can e-mail Bill Drummond and have him contact me. I have updated large portions of the site in the past week, so this is a pefect time for those of you who usually only read the message boards to take a long look around and see what else my site has to offer. Try the jokes or downloads if you're tired of the heart failure stuff, or see how cute a pair of big dogs can be (not big as Art's horse, though <g>). Or maybe you're inclined to see what's on the mind of the world's most opinionated man! Back soon! Jon.

Jon, March 11, 2000 - Hi everyone, Well, I'm not completely finished setting up the new pooter but close enough. I never knew these store-bought pooters were so nice! <g> I'm behind on mailings and e-mail but will get to them as soon as I can. I may not get any posts up today but will get re-started whatever time I wake up tomorrow, health and energy permitting.
     I want to formally say a huge thank you to everyone who donated money for this pooter and its software. I really never knew what a nice pooter could do. I'm sort of stunned. When I started this site, I never dreamed what a nice group of people would gather on a plain geocities website. :-) Jon.

Donnie, March 12, 2000 - Hi and God bless to all, I haven't been to Jon's site in quite a while and I see a lot of new names. Jon and Bill are always an inspiration. Finally, due to Jon's coaxing, I located a CHF specialist in Oklahoma City if anyone is interested. This is my third cardiologist and he is the first one who wanted to do a cath on me to see why I have chest pains, so I am a little nervous, but hopeful. He is also the only one to mention blood clots in conjunction with CHF. He also may take me off Coumadin after the catheterization. He says new studies show it's not really needed where I am right now unless there is blockage or clots. I'm skeptical about this but he is on the CHF Research Team at OU's Health Science Center so all I can do is hope he is on the cutting edge of all that is new.
     He speaks of possibly wanting to put a relatively new device in me: a pacemaker for CHF. You need to be a class 3 or 4 for this. I'm between a 2 and 3, and was diagnosed 2½ years ago. Does anyone know anything about this pacemaker? Also, for those who are towards the top of the transplant list in your area, do you know anything about this device you carry on the outside of you that looked somewhat like a man's bedpan; stainless steel, with tubes running into your heart. I saw a lady on one of our local news station who had been confined to bed and on oxygen till they hooked her up to this thing. It was only a brief local newscast. Jon, you're truly a blessing to all who enter this site.

Jon's March 12 reply to Donnie's March 12, 2000 - Hi Donnie, The need for Coumadin in CHFers has been questioned for years now. When I changed CHF specialists to my current doc some 4 years ago, the first thing he did after examining me and my history was take me off Coumadin. He has since also taken me off aspirin. Coumadin should only be used in those with high risk for blood clots/stroke: people with a-fib, family history of such events, implanted mechanical device, etc,...
     The pacemaker you mention and the LVAD (that thing with tubes) are both described on my Implants pages. There is also information about them in the text files which you can download here. Jon.

Bev, March 12, 2000 - Hi everyone, I just wanted to say hi. I was just diagnosed with CHF on Thursday and it really has me kind of scared, but mostly depressed. I am so glad this site was brought to my attention. I have spent quite a while reading and I don't feel near as alone now. Other people have that pain in the upper chest and arms too. The main trouble I have is going to bed at night. I am doing pretty well during the daytime. Well anyway, hi and I sure am glad I found you. Bev.

Rob M, March 12, 2000 - Hi, I was diagnosed with dilated cardiomyopthy a little over 7 years ago. The cause was idiopathic. My EF has slowly deteriorated from about 30% to today's results via echo of 10-15%. I have been on a regimen of digoxin, prinivil, Lasix, Coumadin, Coreg, and Aldactone for most of the past 7 years, with Coreg and Aldactone being the latest additions. My doc has suggested that it is time for me to find a heart center that can evaluate my condition and plug me into the system. Unfortunately, there are no such places in Alaska so I am looking to the west coast. I am quite functional and exercise regularly but am finding that my endurance has been slowly slipping away. Does anyone have any information on cardiac centers in the West?

Gus R's March 12 reply to Bev's March 12, 2000 - Hi Bev, Welcome to one of the less desirable clubs around. Some of the people here compare our health problems to being in a leaky old boat, and that fits pretty well. Our failed hearts are just like that leaky boat, not what we'd prefer, but better than none. :-) One can spend many hours browsing through the information Jon has here, and if you still have questions, fire away. There are some here who are very knowledgeable about CHF and many other things, and some like me who know little but sure do have opinions on most subjects. Best wishes, Gus R.

Jack's March 12 reply to Jon's March 12, 2000 - Hi Jon, Coumadin use in CHF was explained to me as kind of vicious circle. If you are using diuretics consistantly as a control, then your blood becomes thicker (less volume of fluid) and Coumadin is used to thin it out so it will circulate better but if you aren't on diuretics, then what is the point?

Jon's March 12 reply to Jack's March 12, 2000 - Howdy-doo Jackson, I think it's mainly an old medical school teaching that dies hard, to tell the truth. Aside from the small population at high risk for clotting events, I don't see any other reasons for Coumadin use. I hadn't heard the "less blood, too thick" theory before. Still, just a few years ago, docs wanted all CHFers on blood thinners as a general preventative measure. Go figure. You didn't really expect doctors' practices to make sense, did ya?! :-)

Phyllis A's March 13 reply to Bev's March 12, 2000 - Hello Bev, Welcome to our group. This month is my anniversary for becoming a CHFer. It is 3 years this month when I was rushed to the hospital by hubby thinking I was having a severe asthma attack. It turned out to be hypertrophic cardiomopathy with congestive heart failure. If not for this site, I don't know what I would have done. Do read The Manual and it will answer a lot of your questions; it did for me. God bless.

Bev's March 13 reply to Gus R's March 12, 2000 - Hi, Thank you for the welcome, Gus. I appreciate it. This whole thing has been a little overwhelming and it sure is great to find a support system. Hmmm,..., a leaky boat. Sounds like a pretty good description.

Linda Grant, March 13, 2000 - Hi, I am requesting prayer for my landlord Ed, who has CHF, 2 cardiac arrests, bradycardia and the latest - having a TIA (mini-stroke) while driving down the road with his wife. If she had not grabbed the wheel, they would have been killed due to oncoming traffic. He has to go for heart tests next week. We are hoping for a good recovery from this and upcoming test results. God bless you all. I hope you have good, healthy days ahead.

Joe S' March 13 reply to Bev's March 12, 2000 - Hi Bev, I've been battling this heart thing for 56 years now and I've found that many times we tend to blame every condition we have on our heart. With me, when I have pain right below my throat and achy arms, it is usually a reaction to something I've eaten. About 10 days ago I had it so bad I thought I was dying, so I did a little detective work and found that my visiting sister-in-law had been putting Lawry's Seasoning Salt on everything she cooked. It took 2-3 days of very mild foods to get the pain to abate but now that it has, I feel great. Food allergies can cause symptoms that mock heart problems. I've known a lot of people who've been hospitilized with every symptom of a heart attack only to find out it was gas. I am allergic to 3 food spices and when I overdo them, I feel like I'm going to die. Joe S.

Sal Ricca, March 13, 2000 - Does anyone have any information about EECP for angina?
Jon's note: See Heartbytes and available text files

Ted, March 13, 2000 - Hi, this is an update. I had another cath and not to my surprise, another blockage is forming in one of the grafts, of all things. They don't want to fix it yet because they want to wait and see if it closes altogether or some more start to form. It is getting harder to fight this because it is so hard to see a light at the end of the tunnel but at least I can look forward to my third birthday March 31.

Tim, March 13, 2000 - Hello friends, My name is Timothy but like to be called Tim. I have CHF along with coronary artery diease. I have had 3 bypass surgeries, 2 angioplasties, 17 arteriograms and have had a total of 9 heart attacks. I have an implant called an AICD which delivers a shock of 360 joules or as we call them, volts, of electricity when my heart stops beating. This AICD also acts as a pacemaker. I will talk more later.

Ginger, March 14, 2000 - Hiya's all you newbies, Welcome to Jon's Place. It's not so great having to quailify to be here but it is a great place to be. You will find that the people here are wonderful and very supportive. Try visiting the chat room on chat days. It helps to meet and talk to others who are going through what you are, and the information here is unreal. I used to go to search engines to look up things like a new supplement or med, but now I come here and run it through Jon's search engine. Cya's at chat when I can. Stay well. Hugs, Ginger.

Jeanette W's March 14 reply to Tim's March 13, 2000 - Welcome to our little corner of the world, Tim and Bev. You will find a lot of answers here. Don't be shy and afraid to ask questions, this is one of Jons' reasons for this site. We are a family and we are glad to have you part of our family (although it stinks that you have to be sick to be a part). You will get a lot of support from us. If you ever need anything, just ask and we will help you the best we can or Jon will refer you to someone who can help if he can't answer your request or questions. God bless and take care, Jeanette.

Bev's March 14 reply to Jeanette W's March 14, 2000 - Hi Jeanette, Again I would like to thank all of you for the warm welcomes. You have made me feel better about having a problelm. This site is unbelievable. I already have learned so much and I just barely got started. I know I will have questions in the future; I just don't know what they are yet.

Jackie S, March 14, 2000 - Dear friends at Jon's place, I don't post too often. I am more often a silent reader but I got some good news today and wanted to share it with you. In January of 1998 I was diagnosed with CHF and an EF of 10-20%. I was sure my life was over and then I met a great CHF doc and found Jon's Place and discovered you could live with this illness. My EF bounced back to about 30-35% and there it sat, and I was very happy and grateful for the improvement. Well, I was going to enroll in an experimental study, so they did a MUGA to check my EF and called me and said it was 65%!
     Having been through a lot, I was quite skeptical, however today they did an echo to compare and said it was 50% with near normal heart function. I am so grateful and wanted to share the news with all of you. Jon's Place has been a lifeline for me and will continue to be. If this can happen to me, it can happen to anyone. My original cardiologist said that my heart damage was irreversible and my only hope a heart transplant.

Tim's March 14 reply to Jeanette W's March 14, 2000 - Hi, I was so delighted to hear from you Jeanette that I hollered for my wife Barbara to come look. I think this is the neatest way to correspond. A little background on myself would help everyone know me better. I can't say it all in one reply. I've been married to my sweet wife Barbara for 33½ years. We've raised a family of four: 2 girls and 2 boys. Our baby Lisa is in college to become a clinical psychologist. I have been sick with heart problems for 27½ years. I'm still the youngest person to have bypass surgery in the U.S. As of this writing, I don't know of anyone else except a 29 year old man from North Carolina. I was 26 when I had my first bypass, age 27 for the next and age 38 for the third. I died twice during the last one and had an out of body experience. It still is the most beautiful feeling that will ever be until the Lord takes me where I belong. I will write more later. God bless all of you. Tim.

Pam ?, March 14, 2000 - Hi Everyone, My name is Pam and I'm 51 years old from Ohio. I was just diagnosed with CHF and I'm so scared. I'm trying to learn exactly what it is and what I should be doing to help myself live somewhat of a normal life. I love Jesus and trust Him to lead me where He wants me to be. I believe He led me to this site. I was searching for info the day I was diagnosed and this was the first site I visited on the subject. I was amazed to find so much information and so many people who are in the same "leaky boat."
     My health was reasonably good until I had a heart attack one afternoon in January, 2000. I had cervical spine disk fusion surgery 4 years ago, but other than that I was reasonably healthy. I've been overweight for the last 7 years and maybe that had something to do with it. I've always eaten all the good-for-you foods and have never smoked or drank. What happened?! When I had the heart attack I didn't go to the ER - big mistake! - on my part. I would have been taken care of immediately and possibly started on medication or had tests sooner.
     As it was, I waited 8 days to go to my doctor, a general practitioner. He, of course, just passed it off as nothing. I waited another week and went to a cardiologist who did 2 EKGs which came out bad. He ordered an echocardiogram and said it was "very disturbing" and a stress test, which I barely got through without passing out, showed there was a spot damaged on my lower heart muscle. I was on the treadmill for 2 minutes and my heart rate had already reached 145. He decided not to do a heart cath and put me on 3.125mg Coreg and 10mg Lipitor. My cholesterol was 237. I don't know what the other numbers were.
     I've been on the Coreg for less than one week now and I feel terrible. He didn't put me on a diuretic and my hands are swollen pretty badly. Shouldn't I be on a diuretic first? I'm praying for you all and I know I'm not as far along in this disease as some of you are but I have a feeling I will be there soon. I'm trying desperately to keep my chin up and am fighting depression every day. I have so much to live for as I'm sure you all do. I have 3 daughters and 3 beautiful grandchildren I would love to see grow up. I'm sorry to be so windy; I just need someone to talk to about all this. Thanks for listening and God bless you all.

Art, March 14, 2000 - Hi, I am looking for help from any of the many friends I have made over the years at Jon's Place. On July 9, 1998, I began corresponding to Kathe ( about Coreg treatment. Over time we became friends and helped each other out with our ups and downs. Kathe finallly got her new heart on November 28, 1998, and was doing fine. She began a support group for transplant patients and last I talked to her she was doing very well. All of a sudden I have lost total contact with her. Does anyone know anything about Kathe or her condition. Please respond to me via e-mail. I am very concerned and would like to know anything. Thank you and God bless all of you. Art.

Ruthie A, March 15, 2000 - Hi to all, and welcome to the newbies. I am so glad you found us! Just an update on a couple of things: Since I recovered from the flu, I have been feeling absolutely wonderful. It is as though I wasn't sick at all! Even my friends and family are commenting about it. I am able to do more in physical therapy than I dreamed possible. The sick part about physical therapy though, is that I actually enjoy the work! <lol> My walking is almost back to normal and my muscles are daily getting stronger. Soon I will be on my own and can lead my normal life again. It cannot come a day too soon.
     The other thing is that my support group is scheduled to begin on March 29th, and will meet every two weeks from then on. The other counselor and I are hoping that chronically ill patients will feel free to come too. It is good for terminally ill patients to have a support group, but those with chronic illnesses seem to get left out in the cold. We are hoping to do our little part to help them out of the mire of discouragement and despair. Please continue to remember me in your prayers. Thanks, Ruthie A.

Tim B's March 15 reply to Pam's March 14, 2000 - Dear Pam, There is nothing wrong with being scared, believe me. We all have been there at the point you are at now, and there still are times I become very concerned. I believe that it was meant to be; the way you found us. God works in mysterious ways, and I have found out not to dwell on it but just trust in the Lord and He will lead you home. I am 100% oxygen dependent now because breathing is hard at times, but I believe that every breath I take God has given to me. Jesus is my peace as I walk and carry my cross and without Him I would not be where I am now. Keep trusting Him and always remember that God will never give you more that you can handle. It's nice to have you with us and thanks for your sharing. God bless you Pam in all that you do, and God bless us all. Tim.

Joe S' March 15 reply to Jackie S' March 14, 2000 - Hi Jackie, That is fantastic news! Every time we here of a report of healing, our "hearts" leap. Praise God and I hope you're 100% in a very short while. Joe S.

Carol W, March 15, 2000 - Hi, This message is for all the newbies who have recently joined Jon's site. I have 2 pieces of advice: 1) Every day you get through gives you more confidence that you will get through some more days, and that many of those days will be good ones. 2) Read Dr. Marc Silver's book "Success with Heart Failure." It is so upbeat and full of information that you finish it feeling that heart failure isn't necessarily a death sentence. It can be scary sometimes, but many of us have lived with weak hearts all our lives. cabwojo@banet

Tim B's March 15 reply to Ted's March 14, 2000 - Hi Ted, I read about you having 3 heart attacks. Ted my friend, that is 3 too many. All kidding aside, I am glad you came through the way you did. The 9 heart attacks that I had were not all bad ones. I don't want to mislead anyone. The worst one I had was during my third open-heart surgery when they were cutting away scar tissue so they could work. Even though I was out, I still feel the pain. That one destroyed 2/3 of my heart. Right now I'm living on 20% heart function assisted by oxygen 24 hours a day. I am in the later stages of congestive heart failure. One day down to one second is the way I live many of my days. I trust in the Lord for He will help me carry my cross. It gets so very hard to go on, but there is life after here that makes it all worth it. God bless you as well as the rest, Tim Brownie.

Rieale's March 15 reply to Pam's March 14, 2000 - Hi Pam, Where in Ohio are you from? I live in Fostoria, which is about an hour south of Toledo. If it is possible, I'd call your doctor immediately and insist that he talk to a CHF specialist at Riverside (Columbus), MCO (Toledo) or where I go - The Cleveland Clinic. If you are referred by your doctor, the specialist will most likely be covered under your insurance. Cardiologists are fine but it sounds like you need a specialist who can explain what treatments are needed and what the best course of action is for someone who has your heart problems. I question a drug regimen of Coreg and Lipitor alone. Dr. Starling warned me that Coreg can help retain fluids so my guess (which is completely non-medical) is that you are in need of diuretics, as well as other meds to help you live a comfortable life. Please read Jon's information on diet, water intake and medications in The Manual. Did you get an echocardiogram, blood work or chest x-ray? I know testing is uncomfortable but in order to live a healthy life, you have to know what you are facing. Information is the key to health. Please feel free to e-mail me.

Rieale, March 15, 2000 - Hi, I know most of us live on a tight budget between the meager income we receive and the ever mounting piles of bills that keeps building up. The other day, my aunt called me through an Internet phone provider that provides free long-distance calls using your internet connection, sound card, and a headset. I've used this several times and it is really amazing. The address is

Jana B, March 15, 2000 - Hi, First I would like to say how happy I am that Ruthie is feeling so well. God is good! My next thought is for Tim. Tim, I can't stress here enough how your upbeat letters in the worst of circumstances have lifted me up! You are one strong man, one strong Christian, and you have blessed my heart with your faith. I know God will continue to bless you. Jana.

Helen O, March 15, 2000 - Hi all, It has been awhile since I have written. We are finally settled in our new apartment. The computer is up and running with Internet access, finally! I am on spring break this week, so I got caught up on back posts (2 months worth). I also have a new e-mail address. I promise this is the last change. Mailpuppy lost my address book and all my saved messages from the last 2 years. I can't even get tech support, to ask them why. I also did a lulu 5 weeks ago. I was stepping off the bus and both my ankles turned. I have torn some ligaments in my right ankle and it still hurts like bloody blazes. I have been on crutches and not able to do much, but somehow managed to continue school. I do have one piece of good news: My doc said it was okay for me to go up to Payson (about 5500 feet) to camp one weekend in April, one weekend in May, and 2 1/2 weeks in July. I am so happy. Helen Otis, age 26, EF 25-30%.

Jerry V, March 15, 2000 - Hi, Is anyone taking Coreg once a day instead of a dose twice a day? I messed up and forgot to take my evening dose 2 days in a row and got a good night's sleep! If it is common to take one dose a day, approaching my doctor with information that others are on single doses would help. Thanks in advance.

Jon's March 15 reply to Jerry V's March 15, 2000 - Hi Jerry, Sorry but Coreg is a twice-a-day drug. It is taken that way to maintain beta-blockade 24 hours a day. If you take it once a day, your neurohormonal system is twanging up and down like a yo-yo every day. That can actually be dangerous, especially in people with CAD (coronary artery disease - blocked arteries). For similar reasons, you should never just stop taking any beta-blocker - it can cause heart attack.
     Unfortunately, some of the heart meds we take, like Coreg, can actually make us feel worse. It's a trade-off: longer life for slower existence. There are some lucky CHFers who actually feel a lot better on Coreg. How long have you been taking it? Maybe your body isn't yet used to it and you'll feel better later. Jon.

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

Talk to Jon Site Index