Jon 1-1  thanks & a happy New Year to you all
Jack 1-1  that wasn't how my post read
Jon's 1-1 reply to Jack's 1-1  clarification
Virginia R's 1-1 reply to Tom S' 12-27  sources of help, to Ed, Jack & Jon, & more
Barbara K's 1-1 reply to Pete's 12-23  echo results, techs, docs & more
Lori Wilson 1-1  thanks for support & more
Luc D 1-2  happy New Year
Ginger 1-2  happy New Year & will be gone awhile
Doug K 1-2  happy New Year
Don G 1-2  happy New Year
Bill D's 1-2 reply to David Hammond's 12-31  welcome to Jon's Place & more
Ronald J 1-2  does anyone take Coreg?
Sue B's 1-2 reply to Jon's 1-1  thanks, voice from the past & more
Davlin's 1-2 reply to Lee R's 1-1  update, had pneumonia, upcoming EPS & more
Darillyn 1-2  just diagnosed, many questions
Lori Wilson 1-2  my dad's story, thanks, & questions
Tim Rust 1-2  intro & lots of questions
Liz J 1-2  update, holiday wishes, upcoming surgery & more
Jerry H 1-3  clinic & doctor/treatment questions
Sandee 1-3  still feeling bad
Ben B 1-3  intro, coping & more
Al ? 1-3  intro & more
Tom S' 1-3 reply to Ronald J's 1-2  Coreg use & side effects
Margie F 1-3  holiday wishes & more
Bill D's 1-3 reply to Raymond's 12-31  welcome, CHF info, overdoing it & more
Robin W 1-3  update, transplant questions & more
Maggi ? 1-4 holiday wishes
Jon 1-4 bios & new site problems
Bill D's 1-4 reply to Sandee's 1-3 surgical procedures vs medical therapy
Bill D's 1-4 reply to Jerry H's 1-3 CHF clinics, docs & more
Bill D's 1-4 reply to Tim Rust's 1-3 locale, info, docs & more
Bill D's 1-4 reply to Lori's 1-3 enjoyed your post
Bill D's 1-4 reply to Darillyn's 1-2 welcome, hope to know you a long time
Frank C 1-4 seeking diet recommendations
Al H's 1-5 reply to Jerry H's 1-3 clinic possibility
Don G 1-5 possible lead to clinic
Kay K's 1-5 reply to Frank C's 1-4 diet, edema & more
Luc D's 1-5 reply to Liz J's 1-2 praying for you & New Year wish
Bronny 1-5 intro, history, glad to find you
Pete E's 1-5 reply to Ben B's 1-3 finding the right doc is important
Peg G 1-5 holiday wishes & more
Nanc 1-5 update on Liz J regarding her surgery
Bill D's 1-5 reply to Al ?'s 1-3 welcome, boats, EF & more
Bill D's 1-5 reply to Frank C's 1-5 diet, weight, recipes
John Len's 1-6 reply to Bill D's 1-4 bypass surgery outcomes
Sharon ? 1-6 doctors not helping my pain
Ruth P 1-6 update, holiday wishes, beliefs & this site
Jon's 1-6 reply to Ruth P's 1-6 just here to help
Nanc 1-6 update on Liz J - prayer request
Greg M 1-6 intro & more
Greg M's 1-6 reply to Tim Rust's 1-2 cardiologists
Shannon M 1-6 what is glucose intolerance & can meds cause it?
Henry T 1-7 cold weather questions
Vitrginia R's 1-7 reply to Shannon M's 1-6 info gathering helps - book suggestion
Donna P 1-7 prayer request for my dad and mom
Jamie S 1-7 decreasing meds makes me nervous & more
Jon's 1-7 reply to Sharyn's 12-31 one opinion on Y2K
Jon's 1-7 reply to Tim Rust's 1-2 where to go from here
Nanc's 1-7 rply to Darillyn's 1-2 fibromyalgia & coping with CHF
Jon's 1-7 reply to Jerry H's 1-3 expecting doctors to treat the "total man"
Tom S' 10-7 reply to Donna P's 1-7 fear of dying
Pete E's 1-7 reply to Henry T's 1-7 cold weather precautions
Jon's 1-7 reply to Frank C's 1-4 seeing a professional can help
Jon's 1-7 reply to Bronny's 1-5 people who understand
Jon's 1-7 reply to Sharon ?'s 1-6 questions about pain
Jon's 1-7 reply to Henry T's 1-7 cold weather practices
Jon's 1-7 reply to Donna P's 1-7 death or dying?
Jon 1-7 technical demands slow me down
Robin W 1-8 update & transplant priority questions
Ben B's 1-8 reply to Pete E's 1-5 I'm hanging in there & more
Ruthie A 1-8 update, no insurance, no cath, & more
Nanc 1-8 transplant director died
Barb M 1-8 questions about heart class
Jon's 1-8 reply to Barb M's 1-8 you'll pick it up fast - look here
Kay K's 1-8 reply to Ruthie A's 1-8 hospitals, payment plans & more
Nanc 1-9 update on Liz J
Jill M's 1-9 reply to Shannon's 1-6 Medscape has article that might apply
Lee D 1-10 hi! intro & more
Nanc 1-10 Update on Liz - prayer request
Sue B's 1-10 reply to Nanc's 1-8 irony, there's a lesson here, & more
Mike H 1-10 I'm 25 and just diagnosed
Shirley K's 1-10 reply to Mike H's 1-10 I know how you feel
Jennifer 1-10 just got peripartum cardiomyopathy - would love to chat
Candy's 1-10 reply to Jennifer's 1-10 welcome! & more
John Stewart 1-11 intro, mood swings question & more
Jennifer's 1-11 reply to Candy's 1-10 thanks, my children, Jamie & more
Cheryl Whitten 1-11 questions: activity, good days & fingertips' color
Al ?'s 1-11 reply to Bill D's 1-5 EF, symptoms & timing & more
Tim S 1-11 update, denial, splurging, insights & more
Lee R's 1-11 reply to John Stewart's 1-10 welcome! oxygen question & more
Donna M's 1-11 reply to Cheryl Whitten's 1-11 fingertip color, overdoing & more
Lee R's 1-11 reply to Cheryl Whitten's 1-11 fingertip color, overdoing & more
Virginia R 1-11 thank you for the support
Julie K 1-11 glad to find you! & more
Nanc 1-11 wonderful news about Liz J
Rick M 1-11 John Stewart, Cherryl Whitten, TimS & Donna
Candy's 1-12 reply to Rick M's 1-11 maybe, plus I was told,...
Candy 1-12 swollen feet, Social Security, can't sleep & more
Cindy M 1-12 good CHF article in Time magazine
Sherrell Gay's 1-12 reply to Cheryl's 1-11 thoughts about over-doing it & more
Cindy M's 1-12 reply to Rick M's 1-11 truly adjusting to my limitations
Sue B's 1-12 reply to Rick M's 1-11 denial, Virginia, Nanc & Liz, & more
Jamie S' 1-12 reply to Jennifer's 1-11 welcome, info & more
Blair B 1-12 intro
Vic Sutton 1-12 what is a persantine cardiolite scan?
Harriett S 1-12 Lasix timing & more
Bill D's 1-12 reply to Candy's 1-12 SS application, doctors & more
Bill D's 1-12 reply to Julie's 1-11 coping with CHF, info & more
Bill D's 1-12 reply to Al ?'s 1-11 enjoy it while you can & more
Bill D's 1-12 reply to John Stewart's 1-11 welcome, oxygen, info & more
John Len's 1-13 reply to John Stewart's 1-11 oxygen prescription
John Stewart's 1-13 reply to Bill D's 1-12 oxygen, beta-blockers, heart function & more
Jon's 1-13 reply to John Stewart's 1-13 oxygen use, beta-blockers, info & more
Milt 1-13 question about Coreg dose
Freddie B's 1-13 reply to Robin W's 1-8 transplant status rules changes
Jon's 1-13 reply to Freddie B's 1-13 do you know the names of the drugs?
Jon's 1-13 reply to Milt's 1-13 Coreg dose in trials
Jennifer R 1-13 anyone else have high BP?, chats & more
Jon's 1-13 reply to Jennifer R's 1-13 chat possibilities
Don G 1-13 cookbook progress & free low sodium recipes
Bill D's 1-13 reply to Vic Sutton's 1-12 persantine & stress tests
Bill D's 1-13 reply to Harriett S' 1-12 furosemide dose, info & more
Sharon 1-13 posting & meds change
Chris H 1-14 intro & Coreg experience question
Kelly 1-14 am frightened - seek advice & support
Tom S 1-14 Web sites with recipe possibilities
Candy's 1-14 reply to Bill D's 1-12 SSD, SSI, doctors & more
Jon's 1-14 reply to Candy's 1-14 SSI
Muriel's 1-14 reply to Henry T's 1-7 cold weather, coping without Ned & more
Patricia G 1-14 some very good news!
Elaine S 1-14 glad to find you
Ruthie A 1-14 update, thanks & is anyone on clonidine?
Vic S' 1-14 reply to Bill D's 1-13 thanks, treadmills, & more
Jon's 1-14 reply to Vic S' 1-14 Persantine testing
Pete E's 1-14 reply to Chris H's 1-14 CHF info, Coreg experience & more
Jon 1-14 rheumatoid arthritis info
Pete E 1-14 extra heart sounds
Jon's 1-14 reply to Pete E's 1-14 third and fourth heart sounds
Anne M 1-14 intro, drug trials, oxygen & more
Jon's 1-14 reply to Anne M's 1-14 welcome! oxygen use in CHF
Bev T 1-14 CHF & the sweats questions
Tina's 1-14 reply to Jennifer R's 1-10 have post-partum CM & would love to chat
Rick M's 1-14 reply to Kelly's 1-14 fear, living & dying, & more
Bill D's 1-14 reply to Kelly's 1-14 you'll make it, meds, fear, helping & more
Bill D's 1-14 reply to Chris H's 1-14 getting used to Coreg
Bill D's 1-14 reply to Candy's 1-14 check it out carefully, please
Renee 1-15 glad to find you, seeking CHF info & more
Nanc 1-15 update on Liz, prayers requested
John S' 1-15 reply to Kelly's 1-14 how are you feeling, questions & more
Pam E 1-15 thought of re-doing test stressing me
John S' 1-15 reply to Jon's 1-13 oxygen, lack of insurance, research & more
Jon's 1-15 reply to John S' 1-15 generators, researchers & more
Ricardo Arevalo 1-15 intro, some questions, valve surgery & more
Candy's 1-15 reply to Bill D's 1-14 watching out for bureaucrats
Melanie K 1-15 seeking help with nursing info
Margie F 1-15 update, meds & more
Jon, January 1, 1999 - Hi, Thanks to Ginger and Karen O for their help in listing the new Urls with search engines as well (thanks for the reminder, Al). We made it another year, everyone. It's 1999 now and I can't think of any clever comments so I'll just leave you with some quotes from my favorite book:
Lord, make me to know mine end, and the measure of my days, what it is; that I may know how frail I am. Psalm 39:4
For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. 2nd Corinthians 4:16
The angel of the Lord encampeth round about them that fear Him, and delivereth them. Psalm 34:7
May your angel be close to you this year. Jon.
Jack, January 1, 1999 - Hello, I just want to say that the post with my name on it dated 12/30 to Tom was not posted by me. It is entirely Jon. This probably won't be posted anyway. I would like to continue commenting to people who post at this forum because sometimes I do have good advice. So everybody please post your e-mail addresses so the few of us who would like to comment on your questions and statements can do so with candor. Jack. firstname.lastname@example.org
Jon's January 1 reply to Jack's January 1, 1999 - Hi guys, To help everyone understand Jack's post, he means that I edited his post to Tom very, very heavily. Jon.
Virginia R's January 1 reply to Tom S' December 27, 1998 - Hi Tom, By taking control over a situation that seems rather hopeless, I think you will find that you feel much better, if at least mentally. Regarding teeth, there are a few more options you might want to consider in addition to what Jon has mentioned. If you are close to a dental school, give them a call and explain your situation. Many universities have dental clinics for their dental students to gain experience. Often this care is exceptional. Some city health departments have dental clinics. If your income is above the guidelines, it certainly does not hurt to explain extenuating circumstances as this might affect a decision. The United Way is another good agency. If all else fails, ask the school nurse and document your conversation.
Often times, we who work hard feel guilty or perhaps shamed that we must ask for help. There are a couple of ways of looking at this. You've been a taxpayer and have contributed to these programs for years, so it's only fair that you should be able to draw from the programs when you need it. Additionally, these programs help our economy by maintaining status quo. If I may draw a parallel to our spiritual sides, isn't it true that an omnipotent Father knows all, but yet He rejoices when we turn to Him in prayer? We are to pray without ceasing. Sometimes, we miss out on a blessing when our pride hinders us from asking for help. Sometimes, our pride prevents others from receiving the blessing that comes from helping; Just something to chew on! <G>
Jack, maybe this will be a little food for thought for you and your wife. Invite her to participate in the loved ones forum! Ed, I'm praying for you and your wife! Jon, you are in my prayers as well. I'm glad to hear that Linz is holding her own right now. She is in my prayers as well. I want to thank you and Linda for the Christmas prayers, they were beautiful gifts. email@example.com
Barbara K's January 1 reply to Pete's December 23, 1998 - Hi, Bill, I'm with you regarding Pete being able to see his echo and know what's going on! I have 2 echos a year and also have to sit through my kids being echoed. You would think I would be an expert but I can't make heads or tails out of seeing the screen. During my kid's echoes, a pediatric cardiologist is present and will explain everything and answer any questions I have. When I have an echo, the tech will tell me nothing. I have asked questions and they say they aren't allowed to say anything. It makes me mad because I know they know what my EF is and if my mitral valve is leaking, but they won't say. I have to wait several weeks and call and talk with a nurse who is looking at my echo report. It seems to me like that doctors don't respond much when I have an echo. The last one I had, I never called, and I never heard anything. I did ask questions at my next doctor's visit however. I guess if there were something really bad, they would call. Barbara, age 36 in Arkansas. Bkoster@comp.uark.edu
Lori Wilson, January 1, 1999 - Hi everyone, I'm sorry it's been so long since I've been here. It's only been 3 weeks since my dad died and my family and I are having trouble adjusting. I want to thank everyone for all the wonderful, supportive e-mails during these trying times. Friends are so important. I'm glad I'm a part of this CHF "family." I hope everyone has a happy new year's eve. Let's all have a happier and healthier 1999. firstname.lastname@example.org
Luc D, January 2, 1999 - Dear friends, I want to wish you all a happy New Year and many years to go! All the best from your Belgian friend Luc. Luc.Deseins@ping.be
Ginger, January 2, 1999 - Hiya's, First, happy New Year and may it be good to all. Second, I am gonna be offline from January 4 till January 29. Tom W will be taking over chats and if ya have any problems with chat, e-mail him or Jon. They will help you. I will miss you guys a lot. I want each and every one of you still here when I return and that is an order. <G> Just so no one worries, my absence is not related to my health. It is just personal. It's funny, a year ago a month seemed like a short time to me. Now it seems like a month will be a very long time; I guess because you all have come to mean so much to me and we have become such an everyday part of each other's lives. So, as Jon put it, may your angel stay with you. Hugs, Ginger. email@example.com
Doug K, January 2, 1999 - Hi all, I just wanted to say happy New Year to all of you. May 1999 be a year of healing for us all. Take care. firstname.lastname@example.org
Don G, January 2, 1999 - Healthy New Year everyone! Don. email@example.com
Bill D's January 2 reply to David Hammond's December 31, 1998 - Hi David, 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. You'll be able to find answers to all of your questions including what you need to ask your doctors. You now have a certified membership in the Death's Door Club but don't be in a hurry to get in! The line starts in New Jesey but the door itself is in Wyoming. I've been in line 5 years and I'm still shuffling along in Ohio. Bill. firstname.lastname@example.org
Ronald J, January 2, 1999 - Hi, I'm Ron. I had my first heart attack on the 9th of December, 1995. This event did little damage to my heart and I had no continuing symptoms, however I had a further attack on the March 28, 1997, which severely damaged my heart resulting in me being totally reliant on a pacemaker and a CHF. sufferer. My doctor recently put me on a trial therapy of Carvedilol. This treatment begins with 2mg twice a day for a week, then 6mg twice a day, and so on to a maxium of 25mg twice a day. I found that I gained weight, suffered severe shortness of breath and weakness while on this dosage. I had my doctor reduce the dosage to 12.5mg twice a day, which greatly improved my symptoms. As I was told that this was a new therapy, I was wondering if anyone else has had any experience with this drug, what benefits they may have gained from it and what were the long term benefits, if any. I would be most grateful for any information you may be able to give me on this drug. Many thanks, Ron. email@example.com
Jon's Note: You should start with the Coreg page.
Sue B's January 2 reply to Jon's January 1, 1999 - Thanks Jon, for beginning the new year with such clarity and focus. The quotes really touched me in a special way. Love to all in our wonderful "family" - we find strength in each other. Shortly after being released from the hospital, I came across something that I wrote many years ago, without actually knowing why. It said "Dear Sue, I will give you adequate strength to pursue your destiny. Love, God." We can get a lot done when our strength is being dispensed by God. Sometimes it takes much strength to do nothing. I know. Love, Sue B.
PS. I am still trying to get on the chat. I haven't been too successful but I will try again. Happy New Year. firstname.lastname@example.org
Davlin's January 2 reply to Lee R's January 1, 1999 - Hi Lee, You guessed it, the arrhythmia I've experienced is indeed ventricular tachycardia. I've been on 0.25mg of Lanoxin (digoxin) once a day but we may be taking the next step soon. Unfortunately, the cold I've been fighting these past few weeks got the better of me and I ended up in the ER on Christmas day with a fever of 105. It turns out I've got pneumonia! They kept me for 6 days, pushed all kinds of antibiotics through and kept me on a heart monitor. Anyway, while in the CCU, I had a few v-tach episodes which led to another ECG, which was positive. I'm home again for now and have a follow-up scheduled for next week. They're talking about doing the EP Study in a week or so, after I've finished with the antibiotics. I'll keep all you folks informed when I can. It looks like we're gonna roll the dice again. Later, Davlin. email@example.com
Darillyn, January 2, 1999 - Hello, I have been reading a lot of your posts and am glad to hear that people have been hanging in there with the disease and some have improved. I am still in shock from my very recent diagnosis. I am 44 years old and the adoptive mother of 6 children, ages 3 - 15. I have had poor health for ages because of fibromyalgia. However, over the past 3 years, I have been increasingly concerned that I had some sort of heart problem. I didn't think it was normal to have a resting pulse of 120 - 150 or to become so weak I could not do anything but lie down with my heart feeling like it was going to pound right out of my chest. I couldn't get any of my doctors to take it seriously, though. Then a month ago, I started having asthma-like symptoms. Last week, I got a chest x-ray and they saw that my enlarged heart was the cause of the lung problems. An echo revealed an EF of 20.
I have a million questions. This is not a topic that I am a bit familiar with. I am also very frightened of what this means for my children. I am taking digitalis, Ace inhibitor and diuretics. Hopefully, I will be improved enough to start Coreg or something similar next week. My lung edema does not come on as easily as before I started the meds and my pulse is now averaging about 100 BPM, down from an average of about 140 for the past few weeks. I do not feel any better yet, though. In fact, today I am feeling very dizzy and nauseated. I hope it is just a reaction to the digitalis that will subside. I would sure appreciate some council from someone who has been through this and found something that was at least helpful to some extent. I am also interested in vitamin, mineral, homeopathic or herbal therapies. Thanks for any words of wisdom! Darillyn, from Mantua, Utah.
Jon's Note: Have you read The Manual yet?
Lori Wilson, January 2, 1999 - Hello again, Thanks again for the e-mails over the past day or so. I don't think I've explained what happened with my dad. If you don't mind a long story, read on. My grandmother on my dad's side, age 84, died from CHF in January of 1998. We knew I had it a couple of years ago. I'm 24. Dad never had any problems until right before he died at age 63. He called me and told me he wasn't feeling great so I told him to go to the doctor. When he agreed, I was worried. He never wanted to go to the doctor. The doc did an EKG, was unhappy with what he saw, and called me at work to ask who my cardiologist was. It turns out mine was out of town, so we took my dad 70 miles up to Kansas City to St. Luke's Hospital to my first cardiologist. I had changed because he was so far away from me. His EKG revealed irregular heartbeats but the blood work showed no signs of a heart attack. They told him they'd like to keep him for observation overnight but if he really wanted to go home, that would be fine. He was ready to leave but my sister and I begged him to stay, saying, "Dad, if it was one of us, you'd make us stay and let them watch us overnight with monitors." So, after some coaxing, he stayed.
The next morning they did an angiogram, which revealed 90% blockage of the arteries. So they did an angioplasty with stents. When the stents were inserted to open up the arteries, his veins exploded. Then he was off to emergency double-bypass surgery. Two days later, they did stomach surgery to repair 3 large bleeding ulcers that had eaten through his stomach lining. They were letting fluid in there and making him look pregnant. He was doing fine and after 8 days of being in the CCU, they took him to the intermediate care floor. Thanksgiving was his birthday but he didn't want his presents until he came home. On Sunday, November 29, he was sitting up, talking, joking, and even walked a few yards down the hall. I went home that night, after promising him I'd bring him a vanilla milkshake Monday for breakfast. Monday was to be his first day of solid food and he wanted a milkshake more than anything. I got home, called him and told him goodnight and I loved him. I also made him promise not to get up to go to the bathroom without calling a nurse. He promised. That night at 3AM, he called the nurse. She helped him to the bathroom, then left. Awhile later, she came back, and found him lying on the floor, not breathing. They did CPR. By 4AM, he was back in CCU, in a coma with brain damage. We spent the next few days praying, holding his hand and talking to him. He died on the 5th of December.
His birthday presents are still in my house, unopened. When I went to my mom and dad's to help clean and go through things, I saw all of his unfinished projects. He had retired early at age 55 and he spent his time teaching himself Japanese, wood carving, building a model railroad, learning calligraphy and more. He had a million hobbies. He was even building a ship entirely out of matches (about 5,000 so far) and named it the S.S. Lori. It's sooo hard and it's so scary knowing that I have a bad heart too. Some days I am so depressed, I can't function right. Does it ever get easier? firstname.lastname@example.org
Tim Rust, January 2, 1999 - Hi all, Just a note to introduce myself. I was recently (Thanksgiving week) diagnosed with idiopathic cardiomyopathy with EF of about 20% at age 56. I was experiencing Class III/IV symptoms before diagnosis. I am also a type II insulin dependent diabetic since having an acute pancreas in 1993. The docs think the cause of my chf is viral sometime in the past 1 - 2 years. Retrospectively I know I was symptomatic at Class I/II as early as June and maybe even 1 - 2 years prior to my acute symptoms. I have no coronary blockage. My home is in Bristol, Indiana, where my wife and I own and operate a bed and breakfast, and I also am pastor of a Mennonite Church in Sterling, Illinois. At this time, my primary care physicians are in Sterling and at the Heart Failure Clinic at St Anthony's Hospital in Rockford, Illinois. I have an internist here in Bristol. I have several questions for the group.
What, if any, experience has the group had with cardiologists in the areas I live in - Rockford, Quadcities, Chicago, South Bend, even Cleveland Clinic or Madison Wisconsin, or Minneapolis are not out of range at this point? My father was a family MD and always stressed the importance of multiple opinions. Are there any physicians who stand out both medically and in terms of communication and a sense of spirituality, which is in my perspective, equally if not more important?
What experience have any of you had trying to balance and cope with the dual problems of diabetes and chf? At the present time, my diabetes is high but I have not been as disciplined with my diet as I can be. Regarding meds, I am on Coreg at current titration of 12mg, to be increased on January 19. I also am on 60mg furosemide twice a day, 20mg Lipitor, 0.25mg lanoxin, 20mg Zesteril twice a day, Humlin N and Humolog +/- 25cc and 15cc twice a day, 300mg Allopurinol each morning, and aspirin. Since beginning Coreg, Lasix and Lanoxin, my shortness of breath is 90% improved with no distress at rest and little or no distress when walking and doing light work. I experience some moderate fatigue but do my best to ignore it although I do pace myself better than I ever have before. I do experience some light-headedness at times and I have some difficulty at times getting to sleep even with 15mg Temazepam. I have only been taking this since the onset of chf. I refuse to elevate this problem to Caps and make it an idol! There are times when I have a weird or "funny" feeling in my heart - not palpitations - just a feeling like things are "going on." I also feel a heaviness in my head, like across my forehead, not a headache although I seem to note headaches the first several days after increasing the Coreg. I think I am tolerating Coreg ok but don't know what to expect along the road of titration.
This leads to my 3rd question. The church I serve has given me 2 months of medical leave. Is it realistic to resume my pastoral duties, say 50 - 75% by February? Will the "feel worse before feeling better" necessitate a longer adjustment period? I really hope this is not the case, as I have a great desire to do what I do there, although I do have Disability insurance which will kick at the end of February if I need to use it. Given the way I feel most of the time, I am hopeful that I can continue by then.
I commute between Bristol, Indiana and Sterling, Ilinois, about 250 miles. What risk is there with this situation and meds for my driving. The doctors have not said anything about it and I feel ok doing it but just thought I'd ask for the collective wisdom of the group on this issue. The last thing I need is an accident to complicate my life and possibly hurt someone due to this problem. Anyway, thanks in advance for all your thoughts. Feel free to e-mail me at email@example.com or firstname.lastname@example.org. Grace, peace and much joy! Tim Rust. http://www.rusthollar.com
Liz J, January 2, 1999 - Hi Jon and all, Happy New Year to all and let's shoot for another year. :-) Jon, I continue to send prayers your way, and hope you can stay out of the hospital. Easy does it, and rest, rest, rest. <G> I also continue sending prayers for Mary and husband Ed, and hoping things start looking up. A couple of weeks ago, next year sounded further away and here it is here already. I go for pre-admit to the hospital on the 4th, then they will tell me what time to be there for surgery on the 5th. After making it through this last cath without any problems, I am not as afraid of surgery and have faith that things will go ok. I am trying to enjoy each day to the fullest before then but now need to try and rest more before going in. Hopefully, I will have more energy after getting new parts to heart. <G> I wish I had a laptop but would probably mess it up, getting that morphine! My friend Nanc will post to the group for me. I hope I am back here soon. Liz J. EJa83911@aol.com
Jerry H, January 3, 1999 - Hello to all, This is my first post since my heart attack at the end of November, 1997, but my wife and I have been faithfully reading all the information and posts to this site since discovering it in December of 1997. It helped and continues to help us understand and cope with the everyday problems that go with CHF. I have a question that perhaps one of you can help answer. Is there a CHF clinic in the Jackson, Mississippi area? I have a cardiologist but am becoming more and more concerned about his attitude in treating my condition - nothing major I guess, but it often seems he doesn't want to look at the "whole problem." I'm also a type 2 diabetic and also have peripheral vascular disease. I do have other doctors that I see for these conditions but it seems like from what I've been reading here that there should be a more co-ordinated approach toward treating the "total man" or am I expecting too much? Anyway, I sure would appreciate anyone's opinion about this. Thanks, Jerry H. email@example.com
Sandee, January 3, 1999 - Hi, I just had angioplasty done on November 20 and 23, and had 2 stents put in but I still feel really bad. My BP seems to be alright; it runs 120/57. ClasyTig@aol.com
Ben B, January 3, 1999 - Hi, I just want to introduce myself. My name is Ben and I am 41. I've been reading for about 4 months since my cardiac cath and EP study, at which time I went on disability. I first was diagnosed (basically via x-ray and echo about a year and a half ago), at which time the echo apparently showed an LVEF of 10 - 15%. Of course my doctor didn't tell me much, put me on Zestril only, and sent me off to work. I worked for over a year, 12 hour days, and traveling to Europe and Asia when my symptoms got worse. Finally, I ordered up all my records to find out how bad I was. At the cath, my EF measured 20%. Since that time my doctor has put me on Lasix, KCL and Lanoxin, but small doses, which I am going to ask him to titrate up. I've also started taking CpQ10 on my own. I am watching my diet and can still walk a mile or two a day. I was rejected for cardiac rehab. I am going to see my internist next week to ask about a new cardiologist specializing in heart failure, and also to ask about Coreg. I am either lightheaded or breathless about 50% of the time and feel pretty good the other 50% of the time. I don't seem to have much edema yet. I learned all about salt, fluids and Coreg at this site. Thanks so much.
After a year and a half of known symptoms, and not a little denial, I am finally coming to terms with my disease and to a lesser extent, my mortality, thanks to this site, my family and friend, and my faith in God. God bless everyone. I pray for you all everyday. Ben.
Al ?, January 3, 1999 - Hi, This is my first post. I was diagnosed with CHF in November of 1993 with pulmonary edema and an EF of 13. The EF jumped around over the years from 13 to 51 and is now 10, as determined by catheterization. I have no blockage and am doing well. I choose not to be on blood thinner because we were living and sailing our boat from Seattle to Alaska and down the coast to Mexico, where we sailed the west coast for 3½ years. Last June, we were forced to sell the boat due to my condition. During the last 6 months, my condition has improved and we am now living in southern Minnesota. We would like to have sailed around the world but it wasn't in the cards. Speaking of cards, my new hobby is playing Texas Hold'em at the local riverboat casino 3 days a week. I find it very enjoyable and somewhat profitable. Al, age 63, EF 10. firstname.lastname@example.org
Tom S' January 3 reply to Ronald J's January 2, 1999 - First of all, Happy New Year to all. Loverly weather to greet the last gasp of the year. Regarding Coreg, let's see, I have been taking 25mg twice a day for some time now, I believe almost a year, if not over a year, and I never noticed any appreciable side effects from it. Meanwhile, I have supposedly improved according to my docs, who want to continue the Coreg and Lotensin drug therapy since I have not made a return visit to the hospital in 3 years. During my first stay, my cardiologists had me marked for a heart transplant but due to some differences of opinion and a severe lack of insurance and ready cash, that never occured.
Margie F, January 3, 1999 - Hi, I can remember when I was in high school, discussing the year 2000. I thought I would be old and ancient by then, and now, it's almost here! I know I've been a little down the last few days of 1998 but, I will make it to 2000. I'll just brush myself off and start working on keeping this thing at bay again. Even though this 52 year old body is falling apart at the seams, my mind still feels young. I think I can remember what young feels like. <G> Best wishes to everyone at Jon's Place for a healthier and richer (spiritually) life in the New Year. Bless Jon and his family. MFisher238@aol.com
Bill D's January 3 reply to Raymond's December 31, 1998 - Hi Raymond, Welcome to Jon's Place. Don't forget that his "Site Index" will tell you everything you didn't know about your CHF. It will remind you that every time you "stretch it" you may pay dearly for it in the next couple of days! Lots of us go to "The Archives" when Jon isn't well enough to post messages for a while. It gives us old messages to read 'til Jon gets back. I never raced cars nor welded but I did quite a lot of diving. We lived on a boat and I'd just dive over to spear a dinner sized fish for Rosie and me. Since my CHF, I've found I am uncomfortable even in a swimming pool. The pressure of the water seems to squeeze my chest and that I can do without! Bill. email@example.com
Robin W, January 3, 1999 - Hi all, and Happy New Year! I haven't posted in awhile because I got caught up in the holiday hustle and bustle. I went to the transplant clinic right before Christmas and it looks like I'm going to be checking in very shortly for the 6 to 8 month wait for an O+ heart. Right now, I just need to make the decision as to what hospital I want to check into. Two of the 3 transplant doctors I have been seeing are now at different programs. The one I am the closest to is starting a brand new program and I need to find out when they will be up and running, and if they will accept me. I also want to get my Hickman catheter put back in first by my thoracic surgeon because my vein access is horrible.
I really would like to hear from anyone out there who has had a transplant or is waiting for one now. I am the type of person who wants to know everything that is going to happen (in other words, all the gory details). If anyone feels comfortable with this, please contact me. Also, I have been praying for everyone that this will be a happy and healthy New Year. Robin W. firstname.lastname@example.org
Maggi ?, January 4, 1999 - Hi I just wanted to wish New Years greetings to all. My prayers are that we all feel better in 1999, be it God's will. Jon, I am so glad you and Linz are doing a little better. May God bless. Mpvw@webtv.net
Bill D's January 4 reply to Sandee's January 3, 1999 - Hi Sandee, Angioplasties, stents and bypasses vary in how long they last for us patients. My neighbor across the street likes to point to his bypass scar that he had done 20 years ago. My angioplasties, stents and bypasses promptly clogged up again within 6 months. I'm pretty sure one angioplasty closed back up the day after they did it! There is a great deal of controversy over these procedures. About every year, the cardiologists and the cardic surgeons are presented with studies that indicate the average patient lives a little longer and has less symptoms if they were only medically treated without invasive procedures. Perhaps the best way for you to feel better would be to start on a really low fat and sodium diet. Jon has a good bunch of recipes. Bill. email@example.com
Bill D's January 4 reply to Jerry H's January 3, 1999 - Hi Jerry, I found many CHF Clinics but I couldn't find any in Mississippi. That doesn't mean they aren't there though! Have you checked with the local hospitals, particularly with the nurses in the cardiac rehab programs? I don't believe there is a place that has experts on CHF, cardiovascular disease and diabetes. The best you can expect is them to keep each other appraised of your progress or problems. That's why it's a good idea to look over your medical records periodically. Keep the suckers on their toes! <g> Bill. firstname.lastname@example.org
Bill D's January 4 reply to Tim Rust's January 3, 1999 - Hi Tim, Welcome to Jon's Place! In addition to the forums, Jon has compiled over 200 pages and links to information you should know about CHF. At the top of this page, click on "Site Index." You'll find information about 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. Tim, we are located all over the world and if no one lives near the area you mentioned, you might not hear from us. The Cleveland Clinic is one of the foremost heart institutions and Jon has a link where you can ask their cardiologists a question. You'll see it usually takes them a couple of days to respond. Many of us have diabetes too. A fellow named Milo was keeping a list and if you go to the Archives I think you'll find it in late November or early December. Bill. email@example.com
Bill D's January 4 reply to Lori's January 3, 1999 - Hi Lori, Thanks for telling me about your Dad. His projects reveal a fascinating guy. If my daughter writes anything as complimentary about me, I'd be as proud as your Dad is of you! Bill, age 68. firstname.lastname@example.org
Bill D's January 4 reply to Darillyn's January 2, 1999 - Hi Darillyn. Welcome to Jon's Place. Jon has gathered the world's largest collection of information about CHF. To find it, just click on "Site Index" and go on from there. You are right to be concerned about raising those children. Most of us find ourselves able to do less and less after our first year. Still, we occasionally see that some of us have kept on working for quite a number of years. Your doctors have you on a pretty much standard regimen of medications. The most important thing you can do for yourself is really get on a very low sodium diet. That means you have to read the labels on every can and box you buy. You'll have to cook things without salt and let your family salt their portions themselves. Read up on the supplement CoQ10. Jon has a lot of information on supplements. I expect you to keep me company on our forum for a very long time! We'll both be "survivors". <g> Bill. email@example.com
Frank C, January 4, 1999 - Hi, CHF put me in the emergency room, hospitalized 4 days after fainting on the driveway at home. Tests show ejection fraction of 20%, complicated by atrial fibrillation and pulmonary problems. I am now on Lanoxin and Isordil. My cardiologist strongly recommends immediate loss of substantial amount of weight or face death in 3 - 4 months. I would appreciate diet recommendations, as the doctor only suggested 2 apples and 2 bananas per day, total! firstname.lastname@example.org
Al H's January 5 reply to Jerry H's January 3, 1999 - Hi Jerry, You might check out this clinic in Jackson, Mississippi. They may not be what you are looking for but reading their write-up, they could at least put you headed in the correct direction. Al H. http://heartinfo.org/clinics/ht/6019845770.htm. email@example.com
Don G, January 5, 1999 - Hi, This site might help you find a medical lead to the facility you are searching for: http://www.yellowpages.com/. firstname.lastname@example.org
Kay K's January 5 reply to Frank C's January 4, 1999 - Hi Frank, The diet your doctor recommended doesn't seem like a well balanced diet. <G> Do you have much edema? I did not note a water pill (diuretic) in your list of meds. It might be good to request diet counselng or baratric phys. Our prayers are with you. Kay K.
Luc D's January 5 reply to Liz J's January 2, 1999 - Hello to you all, my friends here. I hope some of you are feeling much better and I wish for all the people here at this wonderful site that we may have a year full of joy, laughter and friendship. Don't forget we are all sick people and we all have some bad days that I know very good, like you all will know by now. I also want to wish Liz all the best with her surgery today. She will be in my prayers like all the rest of you! Take care and I hope we all may have better days. Sincerely, your friend Luc. Luc.Deseins@ping.be
Bronny, January 5, 1999 - Good day to all, I have been reading your notes for some months now. I live in Adelaide, Australia, am 40 years old, and was diagnosed with DCM 2 years ago. It was all very confusing and frustrating until I found this site. Like nearly all of you, I found myself in the ER, very ill, before being diagnosed. It should have been easy to pick up as my mother was in the ER at 39 years of age with DCM and died at 42 years old. Her sister also died in the 70s and now one of my cousins has DCM. Yet I was told time and time again, during the previous visits, the I had pneumonia, depression, anxiety attacks, asthma and other things. No wonder we get so mad! I think the docs should read what some of you have to say. They may learn a thing or two. I also find it upsetting that so many friends and family don't understand or don't want to. It seems easier if they make out nothing is wrong. I don't complain about tiredness and SOB very much, even when I feel exhuasted. I have been told a number of times maybe I would feel better if I got a job. They just don't seem to get it. Thank goodness and Jon for all of you being here. Jon really has a special gift. email@example.com
Pete E's January 5 reply to Ben B's January 3, 1999 - Hi Ben, You have got to find a cardiologist who will take care of you. I am sure this will not be the only post like this you receive, but it seems like sending you away with an EF of 20 is a little much. I see a doctor every 6 weeks to watch for CHF. Shop around. It is your life we are talking about here. Pete. Peiden@skypoint.com Need help with your low sodium diet? http://www.healthyheartmarket.com/
Peg G, January 5, 1999 - Hello Everyone, I've been out of town for the holidays. I went to Texas for Christmas and New Year's, and that's why I'm slow in posting good wishes for everyone in 1999. I've been reading your posts and trying to catch up with what is happening here with many of you. Yes, we are sick. We are also a viable part of God's world. I believe each of us has opportunities to contribute to God's big picture, even when we might not know it. Thanks Jon, for this site, and all your work with it. My prayers continue to be with you and your family, as well as with everyone who is a part of this CHF family. I'm trusting in God, as I know all of us are, for a wonderful 1999 in the midst of whatever this life brings. Blessings. Peg G. firstname.lastname@example.org
Nanc, January 5, 1999 - Hi, Liz's surgery update - The good news is that the doctors replaced both valves and "whatever else she needed." She is off the heart bypass machine and they were closing her up at 7PM eastern time. Her friend is to e-mail me again in the morning with a progress report so as soon as I know more, I will pass it along to all of you. We are doing a good job with the prayers folks, let's keep up the good work please, for our friend until I can post again! email@example.com
Bill D's January 5 reply to Al ?'s January 3, 1999 - Hi Al, You might be interested in my boat. You can see it in "Who's Who." It was designed by another guy from the West coast, Captain Beebe. You are walking proof that ejection fractions don't have much to do with how we feel. After my last echo, I asked my cardiologist what my number was. He said, "What number would you like to hear?" Bill Drummond. firstname.lastname@example.org
Bill D's January 5 reply to Frank C's January 5, 1999 - Hi Frank, Welcome to Jon's Place! I was wondering, had that cardiologist ever seen you before? Was he kidding or are you really so obese it's killing you? If you click on "Site Index" at the top of this page you'll find information about our disease. There are also recipes that are really low on sodium. You can only have the ones that are low on fat, too! <G> Bill. email@example.com
John Len's January 6 reply to Bill D's January 4, 1999 - Hi Bill D, It's been some time since I had my last bypass and laser surgery, and while I may not live longer, I am currently without heart pains. For that, I am grateful. Who knows, perhaps I'll live to see the year 2000+. John. firstname.lastname@example.org
Sharon ?, January 6, 1999 - Hi, I am a female, age 46, with CHF and an enlarged heart. No specialist has done anything to help at this point. I was in the hospital last week and very little was done. I am still dealing with the pain. My complaints seem to fall on deaf ears. I do not know what to do. I have another appointment with a cardiologist this Thursday. I am hoping they will have some answers and help me deal with the pain.
Ruth P, January 6, 1999 - Dear Peg, I certainly agree with you that we all have a place in God's plan. However, everyone who has CHF and visits this site does not necessarily believe in or trust God. They are always welcome and we pray for them as well as those of us who know God's love. In these secular times, many people have not received the Good News of the gospel. I believe Jon's Place serves as an example of Christian concern. I am sure you did not mean to imply that only believers hang out here. Jon, I hope I am correct in this assumption. A belated happy new year to all, I had a bad new year's (healthwise) but am feeling better today. I am glad to hear that Linz is holding her own. Praying for a full recovery for her. Ruth P. email@example.com
Jon's January 6 reply to Ruth P's January 6, 1999 - Hi Ruth, No one was saved when Jesus first ministered on earth yet He helped everyone. There, you have the example. I don't care if someone never thinks about God and has no intention of listening to anyone talk about Him, they're still welcome here. I'm here to help people cope with heart failure. I won't hold back about my certainty of God's love, but no one has to share it to be welcome :-) Jon.
PS. Peg, We know what you meant, this was just to clarify for everyone.
Nanc, January 6, 1999 - Hi everyone, I had an update on Liz sent to me this morning. Liz is stable but still "out", not looking good, he said. Then, no one looks good while on a ventilator, I don't think. Plus, lots of fluid retention in the face distorts what we look like. She is very sedated to keep the chances of bleeding at a minimum. Her friend asked for us to continue our prayers as I know we all will. He would try to have a better report this afternoon so when I get his e-mail, I'll post again. Wishing everyone a feel good day! Nanc. firstname.lastname@example.org
Greg M, January 6, 1999 - Hi, I have been reading your posts for almost a year now and have learned many things. I am 40 years old and was diagnosed with CHF/DCM in May of 1996. Like many of you, I toughed it out for many months before I was accurately diagnosed. At that time my EF was 20. It has now increased to 35. I take Lasix, Captopril, Coumadin, Digoxin, Potassium, and Lipitor. I can't take Coreg because I am asthmatic. I have exerted my right to a second opinion, and am very happy with my new doctor at the Cleveland Clinic. I am very lucky in that I lead a fairly normal life. I am able to work full time (desk job) and watch my sodium intake, fluid intake, and how much weight I lift. I feel very blessed. The only problem I have with this is that I sometimes forget I have a serious illness. Some of the people around me also forget and this can make things difficult. My wife is my rock and, luckily for me, will be graduating from nursing school in the spring. I find that the depression is very cyclical, but I try to keep in mind that for the most part my life is in His hands. I find comfort in that thought. I hope I haven't rambled on. I look forward to posting more often. email@example.com
Greg M's January 6 reply to Tim Rust's January 2, 1999 - Hi Tim, In regards to your request for information on Cardiologists, I see Dr. Robert Hobbs at the Cleveland Clinic. He is wonderful and not at all like the bringers of doom that I saw at the University of Michigan. Don't get me wrong, I wasn't looking for someone who would just tell me what I want to hear. I just wanted someone who had as much optimism as I had. firstname.lastname@example.org
Shannon M, January 6, 1999 - Hi everybody, Well I just received more bad news today. I went to see an endocrinologist a few weeks ago and had some testing done for thyroid and a glucose test as well. The results say that I am glucose intolerant but the doctor says that I am not diabetic. I don't quite understand what this means for me. He said to keep exercising and eat more proteins and less carbohydrates. My questions are how can I be glucose intolerant and not diabetic? Could my meds have caused this? I noticed dizziness coming on about two months ago and my cardiologist would not reduce my meds. I currently take 25mg of Coreg, 60mg of CoQ10, and 10mg of Vasotec twice a day as well as 0.125mg of Digoxin, 40mg of Lasix, a baby aspirin, a multivitamin, and vitamins C and E. Are there any meds that would cause this to develop? I am so scared. The endocrinologist says that I am not diabetic but I am so afraid that I will end up that way. Any info or encouragement that you could supply would be greatly appreciated. God bless, Shannon, age 29, from Idaho. email@example.com
Henry T, January 7, 1999 - Hello everyone, Two quick questions. First, has anyone heard anything significant about poor quality control in generic brands of Lasix, and second, now that even those of us in the mid-atlantic states are feeling a bit of winter, is there anything we CHFers should know about being out in cold weather, let's say mid-twenties and below? Thanks and keep well. Henry. HRTick@aol.com
Virginia R's January 7 reply to Shannon M's January 6, 1999 - Hey Shannon, Don't get too panicked just yet. Of course with everything else going on, I can see why you would feel that way. I read an interesting book named "Protein Power," which discusses the desensitization of insulin receptors in the body. It recommends more protein and less carbos and explains why. It seems that diet is vitally important. Discuss it with your doctork, though. You can find the book at the library or in health food stores or book stores for about $6.95 in paperback. I found the book interesting as my father has Diabetes, CHF, cardiomyopathy and now hypothyroid. I've used some of the information to control tremors caused by hyperthyroidism. Best wishes. firstname.lastname@example.org
Donna P, January 7, 1999 - Hi, I don't post very often but am a frequent browser. I have found it gives me a lot of peace to read how upbeat and sometimes downbeat everyone else is. It shows me that I'm normal when I'm up and when I'm down. I'm not afraid of dying except for what it would do to my family.
I'm not actually writing about myself. My father has had a hard health life. He was a coal miner in West Virginia until he was 27. He was crushed in a slate roof fall in trying to help a friend. Today he is 74 and we quit counting surgeries at 105 incidents. He has been in the hospital since the 22nd of December and for the first time, we're afraid he may not make it and he is terrified of dying. This time it turns out to be cancer and I'm asking for your prayers because we all know that prayer is a very strong medicine. I truly believe that prayer has been the main reason he has survived so much and for so long. I pray the he finds peace and not fear in dying. I also pray that my mother who is scared can find peace also. Thank you and God bless each and everyone. Donna. email@example.com
Jamie S, January 7, 1999 - Hi, Well I saw my cardiologist today and I will go down to 6.25mg twice a day of Coreg. I can schedule my MUGA for April, then I will see him again, he says most likely for the last time, in May. I just celebrated my 29th birthday this past Sunday, January 3. I couldn't believe it. I had myself believing I wouldn't be here back in December of 1997. I am scared and excited about decreasing the medication. It will take some time to get used to being on a decreased amount, mentally that is. My husband is preparing himself for my "I think I feel something", "Can you listen to my heart for me" talk. So he is stocking up on more patience for me. I am renewed in my spirit to keep a healthy lifestyle. I have been given a wonderful education concerning the heart and health, and I feel it's the least I can do for my family and myself to take what I learned and use it. My best to everyone. Jon, I hope everything works out for Linz. Jamie. JamieDan@prodigy.net
Jon's January 7 reply to Sharyn's December 31, 1998 - Hi Sharyn, I have no more knowledge of this than most people, but I'm not too worried. We always have a small store of canned goods, anyway. <G> The necessities, like power grids and major utilities, I am not at all worried about. Microprocessors may have "reporting" problems, but I don't foresee any major malfunctions. The only real concern is financial systems and I think they are so driven by the need for constantly available money that they will be adequately prepared for Y2K. So, I figure it to be a nuisance for most people, unnoticeable by others and a catastrophe only for a very small group of people in certain areas. I would recommend stocking up on usable canned goods about 5 months ahead of the end of the year, to avoid any big runs on grocery stores and try to save one full paycheck ahead, just as insurance. Jon.
Jon's January 7 reply to Tim Rust's January 2, 1999 - Hi Tim, I know you are already aware of this but sometimes it doesn't hurt to be reminded. The important question is, "What does God want you to do?" Concentrate on that question and all others will resolve themselves. Jon.
Nanc's January 7 reply to Darillyn's January 2, 1999 - Hi Darillyn, I just now read your post and am replying in a brief way, since this is going to the message board instead of you personally. Do you drink diet sodas of any kind? This sounds odd but I know a great deal about fibromyalgia and there is come strong evidence that discontinuing them might help you. I have dealt with CHF since 1990, so maybe I can help there too. Would you consider private e-mails on this? Nanc. firstname.lastname@example.org
Jon's January 7 reply to Jerry H's January 3, 1999 - Hi Jerry, I don't think you're asking too much. Getting the right doctor(s) seesm to be a key ingredient in successfully coping with chronic illness. It's a real big pain changing doctors but I think it's worth the effort when you finally find the ones who treat you as opposed to treating the illness. Getting them to work together is really important and I think you're right to expect that. Jon.
Tom S' January 7 reply to Donna P's January 7, 1999 - Hi, The phrase "fear of dying" somehow makes little sense to me. I believe the correct fear would be one of not living. We start the process of dying at the moment of conception, which is as instantaneous as death. Dying is a process. Death is the end result and everything, but everything, in this universe will do it. Occasionally I catch myself having my breath taken away at the very thought of being dead but then I remember some of my near death experiences and just how wonderful the other side may be. My mother was so much like your father in her "fear of dying" and I remember the many occasions she told me she would be dead in a short time. That death watch lasted for near 45 of my 52 years. It was not a very pleasant athmosphere around my home enduring this gloom and doom. Perhaps your dad needs some first hand counseling from a favorite pastor or preacher, or even a friend. My mother finally died at age 96 and right up to the day she died, she was scared. Our lives did change some, but not as drastically as she thought for all those years, and I often wonder how life would have been if she placed those fears aside and lived a full measure of life rather than shrink in the shadow of death?
Pete E's January 7 reply to Henry T's January 7, 1999 - Hi, Being from Minnesota, cold weather is a hot topic here. <G> My doctors stress to be very careful about any activity which could change your core body temperature, so they suggest dressing warm, and not spending much time outside in real cold weather. Up here we wear cold weather breathing masks if it gets below zero. Peiden@skypoint.com
Jon's January 7 reply to Frank C's January 4, 1999 - Hi Frank, My cardiologist arranged a visit with a hospital dietician at his office when I needed to lose weight. I told him I didn't have the money to do this and he just told me to not worry about the cost; he would set everything up. He did. I spent over an hour with the dietician and never saw a bill. Talk to your doctor about seeing a professional like this who can give you written material as well as answering your questions about weight loss, CHF diet and more. With a little luck, it won't cost you any extra and it certainly helps one understand the "big picture" as far as diet goes. Stress to your doc that you are serious about losing weight but that you need some help to do it right. The dietician brought up things I never thought of, such as eating to lose weight without losing a great deal of muscle, which would include a possible loss of heart muscle, and more. Jon.
Jon's January 7 reply to Bronny's January 5, 1999 - Hi Bronny, I have the gift alright - the gift of gab! <G> I am a certified motor-mouth, just ask my wife! Don't you just love it when people almost make an effort not to understand? I remember telling my wife's pastor for the first time that I had CHF. He wanted an explanation,so I gave him one - a pretty good one, too. Then he turned right around and said he thought he could get me a job at some place. He hadn't heard a word! So, we know how you feel. That's why I like this place - when I talk about something, I know you all understand exactly what I mean! Jon.
Jon's January 7 reply to Sharon ?'s January 6, 1999 - Hi Sharon, What kind of pain are you having? Chest pain? Do you have any pain in your jaws or back? Does it happen when you are active, when you are still, or both? More information would really help us understand. Jon.
Jon's January 7 reply to Henry T's January 7, 1999 - Hi Henry, I think one important thing that is often overlooked is this: Always be sure you are not where you might have to walk a long way in very cold weather. That means staying on well traveled, populated roads when traveling. Also, carry highly effective cold weather gear in your vehicle for emergencies and a cell phone in case of a breakdown. As far as normal "getting out" goes, I try not to in very cold weather. <G> If you do get out, dress in multiple thin layers. It traps air in between layers and air is an excellent insulator. That way, you can also "peel down" to the right number of layers when you get to where you are going. Jon.
Jon's January 7 reply to Donna P's January 7, 1999 - Hi Donna, Is your dad afraid of the act of dying, or of death itself and what comes after? This is an important and often skipped-over distinction. Personally, I am not at all looking forward to the act of dying, whether it be quick or slow. Death and afterlife, however, hold no fear for me at all. I look forward to going home. Separate the two issues when you talk to your dad and see specifically what his fears are. Maybe we can help, maybe not, but we are willing to try. Jon.
Robin W, January 8, 1999 - Hi all, Thanks to everyone who has e-mailed me about pre and post transplant issues. Also, Donna P, I have added your father to my list of prayers. I went to the clinic today, my first time as a transplant instead of heart failure patient. My doctor was telling me about some changes scheduled to take effect in the next couple of weeks regarding Priority status of those awaiting transplant. It appears that instead of there just being Priority 1 and Priority 2, they are going to subdivide Priority 1 patients into Priority 1A and Priority 1B. OneA patients would be those in the hospital, 1B patients would be those waiting at home but needing a continuous drip to stay stable. The definition of Priority 2 would remain the same. Anyone else hear about this or have more info? Thanks for the support. Robin W, EF - 8. email@example.com
Ben B's January 8 reply to Pete E's January 8, 1999 - Hi, Thanks for your concern. I am going to my PCP on Monday to ask for suggestions, plus contacting the local transplant hospital to see if they have anyone on my HMO list. The one good thing about my cardiologist is that he fills out forms promptly, which is good for disability, etc. The way I look at it, only God knows when we will die, but I do not want to make any stupid mistakes to accelerate the process, sort of a "serenity prayer" attitude. I'll do what I can to have as long and happy a life as possible, and try not to worry about the rest. Of course, that's easier to do when I feel good, like today. Plus, only ten years ago they didn't regularly use Ace inhibitors, Coreg, LVADs, a lot of the must treatments of today. Thirty years ago, heart transplants were brand new and now they do thousands a year. So I'll just hang in as long as I can and hope for the best.
Ruthie A, January 8, 1999 - Happy New Year to all. Like Jon and so many other people, I have been fighting infection. Since I am allergic to many antibiotics, it has been a trial to find one that is not too strong but still works. In the meantime, I had a reaction to one of the newer models of antibiotic and ended up in the ER, scared out of my mind. It sure is not fun when you cannot breathe! Anyway, I think I am on the mend now. I sure hope so since I hate yogurt!
I had another echo just before Christmas and I was pleased to hear that the left side of my heart is doing just fine: no enlargement, EF of 55%. Now if we could only say the same thing about my right side! <G> The only problem is that my aortic valve is bicuspid (unusual, but not uncommon) and is leaking. My cardiologist is thinking repair before next Christmas. With all the problems Liz is having right now, I am starting to get very nervous. I was also supposed to have a heart cath and possibly a balloon job next week but our application for state supplemental insurance was rejected because of a paperwork mixup. We need to reapply, but the premium and the deductible have been raised so high that we can no longer afford it. So not only am I kind of discouraged about not having coverage, I cannot get the heart cath done without it! With my CAD symptoms increasing lately, that may be a dangerous move but I have no choice. Anyone got any ideas for raising the extra funds?! Stay warm, my friends. Ruthie A. firstname.lastname@example.org
Nanc, January 8, 1999 - Hi, No word today on Liz but I am standing by to pass the word on ASAP.
It is sad to report our director of the Regional Transplant Center in Shreveport, La, Dr. Mohsin Hakim, died of cardiac arrest yesterday at 48 years of age. He had no previous heart problems. He began heart surgery in 1981 and carried out more than 2,500 such surgeries during his career. He is survived by his wife and two boys 3 years old and 7 years old. Sad today, Nanc. email@example.com
Barb M, January 8, 1999 - Hello to all, I have a question I hope someone out there can answer. It seems like you are all so knowledgeable. Is anyone familiar with the New York Heart Association classifications, such as Stage 1, Stage 2? How many stages are there, what are the differences between them, and where can I find any info on them? Thanks in advance for any help you can provide, and we keep you all in our thoughts every day. PAMorgans@aol.com
Jon's January 8 reply to Barb M's January 8, 1999 - Hi Barb, Take a peek at The Manual, Heartbytes and a few other pages listed in the Site Index. You'll pick it all up in no time. Jon.
Kay K's January 8 reply to Ruthie A's January 8, 1999 - Hi Ruthie, Just a quick word about the medical services you need: If you have a life threatening emergency problem, they cannot turn you away and refuse to treat. You may have to get a little pushy or have your doctor tell them this is an emergency situation. If a hospital is receiving goverment money (Medicare and Medicaid), they are held to the Hill Burton Act, where they must allow you to talk with an accounts payable counselor (that's what they called them in the hospital where I worked) to arrange a payment plan for service. They don't give you money or anything for free but do arrange payment plans. I hope this information is helpful to you. Good luck. Kay.
Nanc, January 9, 1999 - Hi, Here's a Liz update. I was told that she seems some improved as of this morning. They were going to try to take her off the ventilator today but I'm not sure if they have or not yet. I slipped a thank you God in my prayers this evening and feel encouraged. Thanks Al, for your post, much appreciated on such a bummed out day. Hugs for everyone! Nanc. firstname.lastname@example.org
Jill M's January 9 reply to Shannon's January 6, 1999 - Hi Shannon, There's an article about glucose intolerance in Medscape's latest MedPulse, from 1/8/99. http://www.medscape.com/. Jill M. email@example.com
Lee D, January 10, 1999 - Hi, I have CHF and have enjoyed reading the info all you have given. I am not having any problems at this time. My doctor will not let me do very much at all but hopefully, things are improving. I have just found where you are located so I will visit often. LDavis4247@aol.com
Nanc, January 10, 1999 - Hi all, Liz is still on the ventilator. The post this evening said they lost her twice the first 2 days. The surgery was extremely difficult. Now the problem is the lungs. She is in a deep sleep and the doctor ordered a CAT scan to see if she had a stroke [which he conveyed he didn't think she did but needed to be sure] God, please let Liz be okay and awake from the deep sleep alert and healing. She is loved and missed even now by so many of us, please hear our prayers. ...With everyone's prayers, I feel she will be better soon. Her friend posted to me and I pray this is so. Nanc. firstname.lastname@example.org
Sue B's January 10 reply to Nanc's January 8, 1999 - Hi Nanc, Thanks for keeping us posted about Liz. Please be sure to tell her that her extended family is praying for her. I am struck by the irony of Dr. Hakim's death. It makes me feel sad and peaceful at the same time. I think that I am in control. All I have to do is take my meds, eat properly, exercise and I will somehow trick death and live forever, or at least to a ripe old age, which seems to get older with every birthday, and then you hear about a Dr. Hakim, who extended the lives of over 2500 people, probably knows everything there is to know about the heart and bam - he's dead at 48. For me the lesson is to take my meds, eat properly, exercise and celebrate life - every day. Dr. Hakim was given 48 years to make a difference. I better not waste a minute of my 100+ worrying about something I have no control of. The serenity prayer was mentioned in a post recently. I think I may be having a touch of the wisdom to know the difference part. God bless all of you. Sue B. email@example.com
Mike H, January 10, 1999 - Hi, I'm 25, and just diagnosed with cardiomyopathy. I'm very overwhelmed and scared! firstname.lastname@example.org
Shirley K's January 10 reply to Mike H's January 10, 1999 - Hi Mike H, I know how you feel. I found out about 6 months ago that I have CHF. Today is my 49th birthday, and I thank God for letting me have these months. I take my meds faithfully and am doing good at this time. Shirley K. email@example.com
Jennifer, January 10, 1999 - Hello, I am 27 and just diagnosed with peripartum cardiomyopathy. That means I got it because of my pregnancy. I went into heart failure 3 days after my C-section. My EF was 45% last time they checked. The doc says I will get better but we won't know for sure until 6 months. I will get another echo done then. I am taking Tenormin and Vasotec but this differs every week since we are still trying to get my blood pressure under control. My last reading was 172/102. I can't believe all this is happening at this young an age. I never dreamed of something like this. My family doesn't have heart problems. I am scared about what the outcome will be, also. I guess we can just hope for the best. I would love to hear from anybody about their treatments or who just wants to chat. I was glad to find this site. Jennifer. JRobi87102@aol.com
Candy's January 10 reply to Jennifer's January 10, 1999 - Hello Jennifer, Welcome to Jon's Place. Jon has a lot of information here to help us CHFers. It has helped me understand a lot of things about my disease. I have cardiomyopathy and congestive heart failure and yes, it is a frightening illness. I'm sorry such an illness had to be part of such a happy event. It sounds like your doctors are optimistic about a full recovery for you. By the way, were you blessed with a boy or a girl? CMPotila@aol.com
John Stewart, January 11, 1999 - Hello from Houston, Texas, I just found all you great folks. I am 51 and just had the wildest 4 months of my life. It started with a sniffle and cold which went to my heart valves. After that, there were emergency rooms and the hospital, lots of doctors, drugs and tests, terror by my family and friends, and confusion and worry among the staff and management where I work and hold a key position. One thing I can say, nobody looks at me the same way as they once did. Now it's quiet, I take my meds, watch my intake, rest in bed more than I did before, and when I'm up, I try to be more active. Also, I sneaked an oxygen tank prescription; it seems to help when the Coreg, Vasotec, Digoxin is knocking me flat. I figured they keep you on oxygen the whole time you're in the hospital. I've gone from 15% to 44% ejection fraction. Talk about hypertension. What are these mood swings? Sorry. Didn't mean to yell. I'll never laugh about people who have anxiety attacks again. Closing now. Thanks to you all for being here. JohnStewart@worldnet.att.net
Jennifer's January 11 reply to Candy's January 10, 1999 - Hi, Thanks for replying, Candy. I got 2 e-mails from here already just since yesterday. One of them told me to talk to Jamie but I don't know who that is. I didn't see her on the Who's Who list. I had a sweet baby boy this time. My daughter is 6 and he is 2 months now. He was 3 weeks early and 6lbs15oz, and 19 1/2". He was perfect. I am going today to get my blood pressure checked so let's hope it is down this time. I will let you all know. Thanks for writing me. JRobi87102@aol.com
Cheryl Whitten, January 11, 1999 - Hi everyone, I have a question for you women out there: Do you find that your symptoms are worse when you are PMS? The fluid retention part of PMS seems to make my fluid problems more intense. I had a pretty rough night last night because of it. I finally took a little more lasix and finally was able to sleep after several hours. I also have another question: When I overdo it, my fingertips get purple. Does this happen to others of you? Should I call my doctor when this happens? It seems to resolve with rest. It happened the day after Christmas when I had a luncheon for my in laws' friends. I only cooked soup and had crackers, and spreads and dips. The guests brought the rest. I was surprised how wiped out I was. It is weird. Whenever I have a really good day, it seems to be followed by a couple of bad days. Cheryl. firstname.lastname@example.org
Al ?'s January 11 reply to Bill D's January 5, 1999 - Hi, Your boat is beautiful and I am sure it provided you with much pleasure as our did. Our boat was a sailboat and we left Tacoma, Washingtin in April of 1994, sailed to Alaska, then down the West coast to Mexico where we spent the next 4 years, except for unbearable July, August and September, when we returned to Minnesota, leaving the boat in San Carlos. In reference to your comment about EF not always being reliable as a gauge to overall condition and ability to carry on daily activity, I was diagnosed with CHF in November of 1994 with an EF of 13. I told my doctor I was planning a trip by boat to Alaska and more. He agreed that it was ok if I hired a crew. I refused to go on Coumadin and my wife and I and our toy poodle "Fiji" left in April and continued our adventure as I described above. Our ativities included fishing, scuba, snorkling, hiking, climbing very steep paths and much more. My sailing partner for 2 years was a retired dentist from BC Canada who commented several times that he didn't think I had a heart problem. My doctor's only explanation was that I could not have gone from a normal EF to 10 over a short period of time but rather over a long period of time.
In November of 1998, I was reminded that I still had CHF as I became more symptomatic. We knew it was time to return to the best medical care and that was in the US. My wife Maureen flew to San Diego and I found a friend help me sail the boat north. After 16 days of motor sailing against the prevailing northwesterlies and the northwest swell, we arrived in San Diego. We made 2 short stops on the west side of the Baja, otherwise it was go 24 hours a day, as we ran about 100 miles offshore. In San Diego, I had a heart cath and found no blockage and an EF of 10. Excuse me for being so long but thought my EF was worth explaining. My condition has improved since we returned in June of 1998 but not as it was during our previous 4 years. email@example.com
Tim S, January 11, 1999 - Hi to all, I read almost every note and even the ones I'm not in synch with. They have a way of coming back to me with insights I certainly wouldn't be bringing in on my own; stuff about God, for example. I've had a great period of good health for the last few months since the CHF diagnosis and consequent change of cardiologists and medicines. With the exception of one stupid week when I worked too hard, I've started to feel that, hey, it really doesn't apply to me, or, gee, I'd really like the pan roast of oysters, lobster, scallops and shrimp, and of course, an over-brimming chocolate dessert last Friday. It's called being hard headed and worse. Maybe it wasn't the food but I've had 3 straight nights of little sleep with my heart flying around. I'm sure the image has been used before - it's like a bird trapped in the house, desperately trying to get outside. Will I be stupid again? Yes. Will I get my eyes to this wonderful location and learn from all of you? Yes again. No more oyster bars! TSulli1940.aol.com
Lee R's January 11 reply to John Stewart's January 10, 1999 - Hi John, I'm glad that you found us at Jon's Place. There is a lot of information here to absorb! The mood swings might be caused by Coreg but this whole CHF problem can cause some depression, too. Is your doctor aware of your "sneaking" an oxygen tank prescription? Are there any others out there that question the oxygen? I just have an article that is nagging at the back of my mind but I don't want to rely on my memory (not these days, anyway). Take care, John and keep in touch. LeeRoush@aol.com
Donna M's January 11 reply to Cheryl Whitten's January 11, 1999 - Hi Cheryl, Fingertips get a blue color to them when your oxygen level isn't what it should be. At Christmas, I did way too much and ended up in bed, but I'm the mom and I'm supposed to be able to do the things that all moms do. I didn't cook the dinner but made the side dishes and played with the grandkids and was really wiped out. I even had out of town kids home. By Monday, at the doctor's office, she took one look at me and said my lips were a little blue and my fingertips. It turned out I had pnuemonia. The one thing that is the hardest to learn to live with, is being able to not do more than you should. I'm still trying to learn that. My husband takes over and when I'm feeling better, it really bothers me because I want to do it. I'm feeling better now. I go for a checkup on Thursday and since it is so cold here in Michigan, I really can't go out. My best friend was over last night. I told her how much I wish I could do the things I always did but I know I can't, and it really hurts. She mentioned how good I look but of course, I'm still on all my meds and an antibiotic and prednisone, so as Jon says, this is such a sneaky disease, I think we all end up trying to pretend we feel better than we do. Sorry to be so long winded but I guess it was my turn to vent. Donna M.
Lee R's January 11 reply to Cheryl Whitten's January 11, 1999 - Hi Cheryl, The purple fingertips almost sound like Reynaud's Syndrome; see http://www.atlantic.edu/Raynaud/rayhompg.htm. Are they cold? If it was me, yes, I'd call the doctor just to set my mind at ease. About your party and feeling really wiped out, that is not strange at all. My whole Thanksgiving dinner was done the day before (and it was a simple menu) but after dinner I was "on the couch." If you read some of The Archives, you'll find most of us saying the same thing at one time or another. Sometimes I appreciate the down days to read and just relax. Take care, Lee. LeeRoush@aol.com
Virginia R, January 11, 1999 - Hi, I just wanted to thank all of you who wrote and said prayers for my friend, Mary Lynn Balser, whose mother is in the hospital with CHF and Mary Lynn is unable to see her because of the bad weather and snow. This has meant so much to her and I love all of you for responding to my prayer request. Virginia P. firstname.lastname@example.org
Julie K, January 11, 1999 - Hi everyone, My name is Julie and finally I have my own computer and am online. Hooray! This site reminds me I'm not the only person in the world dealing with this really weird condition. I'm 35 and a single mom and every day I wake up and wish it were all just a bad dream. It seems like it should be. I'll post a bio soon if I can figure out how. God bless. Love, Julie. email@example.com
Nanc, January 11, 1999 - Hey, Liz woke up! She opened her eyes a few seconds and then closed them again. Her son and her friend teased her about going to the casino - she'd have to do better than that - and she opened her eyes again, smiling while listening to them talk. These are wonderful good signs, folks. I'm sooooooo happy to report some good news. Your prayers surely must have been heard. Tomorrow off the ventilator, is my guess. Hoping all goes well. :-) Nanc. firstname.lastname@example.org
Rick M, January 11, 1999 - Hi, Just about every January 11 posting had to do with overdoing and the subsequent wipe-out. It's almost as if there were a bit of "denial" going on. It takes a while for CHFers to really come to the realization that they can't do what they used to do, and it doesn't diminish you as a person, a "mom", or captain of industry if you admit it. If you don't admit it, we probably won't be hearing from you for very long. <G> As a 74 year old, I feel I can make this point better than most. Learn to live with your CHF. Try to see how well you can live with the limitations of the affliction, build your life around what you can do and stop trying to be what you used to be. The rest of your life is what you make it. Nobody's going to do it for you. Now, don't you feel better? email@example.com
Candy's January 12 reply to Rick M's January 11, 1999 - Hello Rick, Your point is well taken. I was always taught to listen to my elders. <g> CMPotila@aol.com
Candy, January 12, 1999 - Hi, It is about 4:30 in the morning and I can't sleep. Why? I can't sleep because my feet feel like big blocks of ice. My toes are red and swollen. Oh, yes! They are very painful, too. I haven't had any symptoms of retaining fluids this way before so I'm not sure if that's what it is. I told my doctor about these symptoms and she asked if my Lasix had been increased. Since it had not been, she said to increase it if I swell up in my feet, but then to get a blood test to check my electrolytes in about a week. She didn't even look at my feet. So listening to ones body is really good advice.
I had my over the phone interview with the Social Security administration. It didn't go too bad. So now all I do is hurry up and wait. When I applied, they had me apply for SSD (long term) and SSI, which I would get immediately if approved. However, to get this, the woman said that I can't have more than $2500 in assets such as retirement funds. Now I have one big decision to make. Do I quit my job now and lose all my medical benefits and use up what I have invested in my retirement or do I continue to stay on my medical leave until my short term disability kicks in, keep my medical benefits and hope to stay employed until the CEO decides not to approve any more unpaid medical leaves? I suppose this could be a no brainer, but the liklihood of me ever returning to my previous employment is not likely so I really want to move on with my life and not have to worry about such things. Oh well, I'll put this one on the back burner and then the answer will come to me. Also, the worker said he hadn't had to deal with a person who doesn't pay into Social Security. A year ago last August, our company voted to invest our Social Security into stocks and bonds and 401k plans, etc. If a person's company is doing this it may make a difference in the amount you receive. I still qualify though, because I have been paying in for many years. Well, I think I can sleep now. CMPotila@aol.com
Cindy M, January 12, 1999 - Hi all, Just a quick note to pass along: In the January 18, 1999, issue of Time Magazine, in the Your Health section, there is a page devoted to CHF and the latest results of research done on those of us who use beta-blockers. It seems well written and easy to understand. I find it quite encouraging that a mainstream magazine such as Time is devoting space to to this topic. Good health to all. Cindy M. CLeighMc@aol.com
Sherrell Gay's January 12 reply to Cheryl's January 11, 1999 - Hi Cheryl, My husband noticed before I did that during the late middle part of my cycle, my energy level decreased and my edema was worse. We started keeping a day to day journal listing my symptoms in relation to my cycle. After several months, we saw a definite pattern. We asked the doctor if PMS could be affected by the illness or medications. He said "it's possible." From a different angle, were the crackers and dips low sodium? Even the dishes our well-meaning family and friends cook for us sometimes have more salt in them than our systems can handle. About being wiped out, It is hard to learn to pace. During my third year following being diagnosed, I was very guilty of overdoing frequently and suffering the consequences. Then I woke up and realized that was not going to help me survive. I was just stressing my body unneccessarily. This past year, I learned how to better say no to the non-important events, then rest and slowly enjoy the things I want to be a part of. I want to be around for a long time. I'm very lucky to have lots of family and friend support to "help" me remember that I am not supposed to being doing much. They don't hesitate to lash me with the wet noodle. But sometimes it is hard sitting around watching everyone else wash the dishes and clean up. :) I hope these thoughts help you. Sherrell. firstname.lastname@example.org
Cindy M's January 12 reply to Rick M's January 11, 1999 - Hi, Yes Rick, as usual, what you say makes perfect sense. I'm one of those in the group stubbornly refusing to accept my limitations. "What, even a 3 day work week wipes me out? No, not the invincible Cindy!" It's very humbling to be controlled by one limitations and I have a lot of work to do in the area of accepting this condition and the long-term impact it will have on me and my loved ones. Thanks for your concern and the straightforward reality check. Take care. Cindy M. CLeighMc@aol.com
Sue B's January 12 reply to Rick M's January 11, 1999 - Hi, I almost denied that I am in denial but then decided to admit that you hit the nail right on the head. I don't bemoan the fact that everything isn't the way it used to be. I just try to figure out how to get it back that way. Nanc, so glad to hear about Liz. Virginia, the prayers continue. Hi to the rest of you. Jon, how's your family doing? Love to all of you. Sue B. email@example.com
Jamie S' January 12 reply to Jennifer's January 11, 1999 - Hello Jennifer, Welcome to this wonderful site. The informaiton here is great. I always believed that knowing is better then not knowing. People have asked me why are you finding out all this stuff, and isn't it scaring me? Well, I didn't know anything for the first 2 weeks while in the hospital and I was scared, so what's the difference? Knowledge is power. I e-mailed you. Did you receive it? I don't want to be redundant. Jamie - age 29, from New Jersey, with PPCM. JamieDan@prodigy.net
Blair B, January 12, 1999 - Hi, I'm 33 and have just been diagnosed with congestive cardiomyopathy or CHF. I just wanted to say hello and thanks for the information. It answers a few questions and confirmed all the previous information presented to me. Talk to ya later. firstname.lastname@example.org
Vic Sutton, January 12, 1999 - Hi, At release from the hospital, my discharge papers said to set up appointment to arrange for persantine cardiolite scan. This isn't in your doctor's translation. Does anyone know what it is? email@example.com
Harriett S, January 12, 1999 - Hi, Every year since 1988, when I was frist diagnosed with CHF, I spent 4 or 5 days in the hospital to get dried out at least once or twice a year. In 1997, I had 5 such trips, one ending up with a stroke and spending 3 weeks in a nursing home. That was it. You see, all my attacks were at night, at approximately 2AM, so my husband asked the doctor why not give me my furosemide before going to bed? He answered I didn't want her getting up at night to go to the bathroom. This was ignorant, for getting up at 2AM, almost dead, was a lot worse than going to the bathroom. Since September 1997, I have spent no days in the hospital. My husband split my furosemide up, 80mg in the morning and 40mg at night, and the doctor agreed to this. During the summer, I babysitted 4 grandchildren, 3 of which are in school now. I still babysit my 2½ year old granddaughter 5 days a week. I hope this will help some of you. This could not have done without the help of our Lord. I am a first time poster. God bless you all. Thank you Jon, for this space. Harriett S. K3tnaz@aol.com
Bill D's January 12 reply to Candy's January 12, 1999 - Hi Candy, I think you should hire a lawyer who specializes in SSI and SSD. By law, they can only charge you a maximum of 25% of whatever first payment you receive. You don't want to make any mistakes here, particularly quitting your job. What if the rules say you have to be fired to collect? It almost sounds like you're applying for Medicaid rather than an income from Social Security. Changing the subject, you said the nurse didn't even look at your feet. I would think hard about replacing that doctor. Many of us have done just that and been thankful we did. The last thing you need is a doctor who is too lazy to look at your feet. It sounds like listening to your body is more worthwhile than listening to your doctor! Bill. firstname.lastname@example.org
Bill D's January 12 reply to Julie's January 11, 1999 - Hi Julie, We all wish CHF wasn't as common as it is. We have 5 million people for company! Welcome to Jon's Place. In addition to the forums, Jon has 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 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. Tell us how old your kids are. You're going to have to teach them how to help you more and more as time goes by. If you go back in The Archives a month, you'll see 2 or 3 other young women who are facing the same problem you are. You might want to e-mail them to get their thoughts. In the meantime, I hope you will keep an eye on us here. We keep getting people your age with similar problems. Perhaps you can help. Bill. email@example.com
Bill D's January 12 reply to Al ?'s January 11, 1999 - Hi Al, You must be fortunate to be able to get along with an EF of 10. My cardiologist said that a few of his patients were able to live a normal life with that kind of an EF. More power to you! Most of us are basket cases when we fall that low. Another thing I have noticed is, in the normal course of this disease, most of us feel pretty good for the first year, despite what our EF is. So you guys, who've just got the stuff, would be wise to do the things you have always wanted to, now, without waiting 'til you can't! That sounds like an exciting trip, Al. You say you've "swallowed the anchor" now? Did you say you sold the boat? Bill. firstname.lastname@example.org
Bill D's January 12 reply to John Stewart's January 11, 1999 - Hi John, Welcome to Jon's Place! This place is much larger than you think! In addition to the messages on the forum, Jon has over 200 pages and links of CHF information. Click on "Site Index" at the top of this page. Start by reading "The Manual." The more you know, the faster you'll be able to start dealing effectively with CHF. Most of us started out not knowing what questions to ask our doctors! When you're up on this stuff your doctor will be more forthcoming. How did you "sneak" a prescription for oxygen? Did you forge it? That carries a prison sentence in my state! Those medications aren't wiping you out. The idea is to get your heart to beat well enough to pick up enough oxygen from the air for you. Being on oxygen all the time prevents that. What you're doing is like taking morphine for a headache. You'll never be be to get off the stuff. Bill. email@example.com
John Len's January 13 reply to John Stewart's January 11, 1999 - Hi John, If that prescription for oxygen is not legitimate, and a health care provider is picking up the tab for it and finds out, guess who is going to get a rather large bill for it? I am on oxygen and believe me, I'd be glad to give it up if I could. John. firstname.lastname@example.org
John Stewart's January 13 reply to Bill D's January 12, 1999 - Thanks for the welcome, Bill. The doctors here in Houston say the main problem over time with CHF is the fibroid & scar buildup that takes place on the heart walls, making things worse. That's why beta-blockers are back in favor; they restrict movement and scarring. Since heart damage is caused by lack of oxygen and nutrients, I nabbed the oxygen (prescription for congested lungs) but other advantages appeared. It kills germs I am exposed to from working in public, where I am constantly sneezed and coughed on, and shaking hands. I am new to this but I'm not sure I can survive a bad cold as before. I am hoping the increase in my blood oxygen levels may reduce heart cell damage. I don't overuse it. In 4 months, I've gone from needing a transplant or having maybe 2 years of life, to performing close to my norm. Bill, it could've been all the people who were praying for me, maybe they gave me supernatural healing, but I couldn't just sit around, so I became an oxygen nabber. Sorry. JohnStewart@worldnet.att.net
Jon's January 13 reply to John Stewart's January 13, 1999 - Hi John, Is it possible your doctors have over-simplified beta-blocker use to an extreme in their explanation to you, or that you misunderstood them? Some beta-blockers have multiple actions. As far as I know, all beta-blockers have multiple effects on the heart. I have never seen the reason you describe mentioned as primary in the medical literature. While it may be one reason, I don't think it is the primary reason for beta-blocker use in CHF. The Coreg page describes in plain English the theory behind beta-blocker use in CHF as described in current medical trials, which can also be found there. Dr. Marc Silver (unofficially) okayed its accuracy immediately after I wrote it - I don't trust my explanations without a qualified medical opinion on them. :-)
I took 2 articles about oxygen use in CHF down off the Heartbytes page because I was spending too much time explaining them. Both were medical studies examining oxygen supplementation in CHFers. They both concluded that unless required by blood oxygen testing, supplemental 02 might actually be harmful. They did not say that it would definitely be harmful but that it is very unwise for a doctor to prescribe 02 lightly, just because a person has mild to moderate CHF. I use oxygen myself but only when I absolutely must, because it might reduce my ability to function without it. My insurance company purchased my oxygen machine and gave it to me - recognition of the fact that I was probably going to need it a lot down the road, but I hate to think what it cost - even the maintenance agreement is expensive!
Prayer is definitely a possibile reason for improvement! There is also a 6 month window immediately after diagnosis and first treatment where a CHFer may dramatically improve, if such improvement is going to take place. About 30% of CHFers are lucky enough to get close to normal heart function back in that first 6 months. The other 2/3 aren't so lucky and we cope as best we can. I felt good and functioned very well for almost 2 years after diagnosis and my EF was 13. After that, I deconditioned and my heart grew weaker, and my CHF progessed, even though my EF actually went up. Live hopefully but don't count your chickens, blah, blah, blah, <G> The point is not to place too much faith in the oxygen as a healing factor. It's not likely it was responsible for improvement unless you had a serious deficiency, which should have been noticed by the docs.
Finally, welcome to Jon's Place! I hope your improvement is permanent - that's the hope I hold for everyone who comes here. If so, stay on your toes and be sure your doctors do too, so you can maintain your heart function. If not, it's something that can be lived with, if you have the information and the attitude. Ask anyone around here! Self-education is terribly important. There's a link to my Site Index at the top of this page. Start with The Manual and keep on going. You'll find a lot that your doctors didn't tell you, and even better, you'll find the basis for lots of good questions to ask them. Jon.
Milt, January 13, 1999 - Hi to all, Although I do not post very often, I read them every day. I was diagnosed with DCM -CHF in November of 1996. My cardiologist did all the tests, right heart cath, echos and MUGAs every 6 months. He had me on 50mg of Cozaar and Lasix as needed. If I gain 2 or more pounds, I take 40mg Lasix. A 30 day supply will last 60 days. I was started on 3.125mg Coreg twice a day and worked my way up to 50mg twice a day. On my December check up, he suggested I go to a heart failure clinic: The Michigan Institute for Heart Failure And Transplant Care at Botsford Hospital. I was examined by Dr. A Levine. After a clinical exam with tests scheduled to follow, she lowered my dose of Coreg to 25mg in the AM and 25mg in the PM. She said that no tests were ever done by the manufacturer using 50mg twice a day, so they only prescribe 50mg per day. Has anyone else heard of this? Although I have been short of breath lately the past 2 weeks, I have blamed it on the cold weather and less activity. Well, so much for rambling. Good health to all and God bless. Age 57, EF 35, DCM-CHF. email@example.com
Freddie B's January 13 reply to Robin W's January 8, 1999 - Hi Robin, I had my 3 month visit with my transplant cardiologist on Monday, January 11. He informed me of some changes that will become effective on January 20. The priority status for heart transplant patients will change from the current status 1 and 2, to status 1A, 1B and 2.
These IV meds would increase the output of the heart, which should improve how a patient is feeling and give them a little more energy. The patient would be in a regular room, or if certain conditions exist, they could be at home on IV drip using a special pump. The one major danger of this medication is it can cause a-fib, which can cause sudden death. Duke is considering letting patients with an AICD device and living close to the hospital be the ones that can be at home with the IV drip. The reason is that if you were to go into a-fib you would have the defibrillator to shock you back into regular rhythm. The living close requirement is obvious. Duke has talked to the Cleveland Clinic and they interpret the new rules the same way. I am one of the patients that Duke is considering allowing to be at home on the IV. I currently have an AICD device and I live fairly close to Duke. This would raise my status to 1B. I had a right heart cath done Monday and it shows that my blood output volume is decreasing. All other pressures were ok. Prior to being allowed to stay at home would require a hospital stay of about 2 weeks to see if the medications caused a-fib or any other abnormal heartbeat. If there were no problems, I would be allowed to go home. Every 3 weeks, I would have to see the transplant doctor for a check up. Blood tests would be required twice a week which could be done locally. I would not even consider doing this if I did not have the AICD device. My transplant doctor told me about 2 studies of 3 different patients that were sent home with the IV drip. All 6 patients died. The study did not indicate if the patients had an AICD device.
These changes were sent out right before Christmas and the transplant clinics are looking at these new rules to ensure that the patients receive the best care possible. Please excuse my delay in getting the information out because I did not get home from Duke until 5:30PM and was totally wasted. I apologize to the chat group Monday for my not responding. I think I fell asleep. Tuesday, I slept until noon and then had to get ready for my visit with my cardiologist. When I got home, I was wasted and slept most of the evening. If anyone has any questions or I have confused you please don't hesitate to contact me. I will try to answer your questions as best I can. I cannot remember all of the details that I found out at Duke (CRS) but I will do my best. Take care everyone and may God bless you. Freddie Batten. firstname.lastname@example.org
Jon's January 13 reply to Freddie B's January 13, 1999 - Hi Freddie, I am intrigued. Do you know the names of these IV meds? I first assumed them to be the usual powerful inotropes such as Primacor and Inocor, but those IV meds are routinely used both in clinics and at home now, although at home, they are usually started by a visiting nurse. Although their strength makes them dangerous, I have not heard of any consistent SCD problems. My clinic uses such drugs for severe CHF patients. Let us know. Jon.
Jon's January 13 reply to Milt's January 13, 1999 - Hi Milt, According to my Coreg page, some trials did use 50mg twice a day, as early as 1995. I didn't look anywhere else, but 3 ain't bad for a start. <G> The last one I mention was reported on at the very last AHA meeting in November of 1998, so she really should have known about that one. Your doc can see them by looking in Medline (she'll know how) for these studies/trials. Your doc will probably recognize the M. Packer of the second trial as one of the leading CHF researchers in the world. Remember that 50mg twice a day is usually reserved for those weighing over 187 pounds.
Jennifer R, January 13, 1999 - Hello everybody, I have met some very nice people here, who have e-mailed me. Thanks to everybody for your support. I went to the doc the other day and my BP was still high, 152/102. I am now taking 20mg Vasotec and 25mg Tenormin. I don't understand why we can't get it under control. It has been 2 months since the baby was born and no luck yet. Iget dizzy and sweaty a lot also. Has anyone else had this much trouble with their BP? Otherwise, I feel pretty good. I am tired a lot from the meds, though. I think we need to chat. I never find anybody in there. Talk to you all later. JRobi87102@aol.com
Jon's January 13 reply to Jennifer R's January 13, 1999 - Hi Jennifer, Have you tried the chat room at one of the times listed at the top of the chat page? You can also e-mail some people with a time - include the time zone you are talking about! - and meet them there at that time. Jon.
Don G, January 13, 1999 - Hi everyone, Our new page is growing. Slowly but surely, we are getting more support for nutritional advice and low sodium help. Our cookbook is in good hands at a major publisher and although I can't yet announce who it is, they will permit me to do so after we "sign." I will still e-mail recipes to anyone asking for them. To put your name on the list for one of the first editions, drop by http://www.megaheart.com/. If you need a recipe created for you, just let us know. We'll create it, test it and supply you all the nutritional data. Don. email@example.com
Bill D's January 13 reply to Vic Sutton's January 12, 1999 - Hi Vic, Once a year I get a nuclear scan. It's to see how well my heart's pumping blood. Most patients have 2 pictures taken. One's at rest and the second one is after you've spent some time on the treadmill to stress your heart rate up to 131. Because I'm on Coreg it doesn't let my heart rate get that high. They inject me with Persantine which artificially increases my pulse. That part I'm sure of, Vic. I think the cardiolite is the dye they put in you so they can take the pictures. Are you able to have a "stress test" Vic? Are you on a beta-blocker like Coreg? Welcome to Jon's Place! Bill. firstname.lastname@example.org
Bill D's January 13 reply to Harriett S' January 12, 1999 - Hi Harriet, Splitting up your furosemide is a good idea. I found it works, too. In that I don't usually get to bed before 12:00, I take my evening dose about 6:00. That way it's worn off and I don't have to get out of my nice warm bed! <g> I've heard that's why Lasix was named. It works for 6 hours max! Welcome to Jon's Place! Have you looked under "Site Index" and found all the goodies there? Bill. email@example.com
Sharon, January 13, 1999 - Hi, Although I have only posted one time previously, I read the posts several times a week and think this is just great. I was diagnosed as having DCM this past summer and am on 50mg Cozaar and 75mg Tropol XL, aspirin, and magnesium. My EF is 40%. The cardiologist just added the magnesium because I was a little low on it, according to the blood work. I know that a low magnesium level can cause heart palpitations but mine wasn't really that low - 1.3. firstname.lastname@example.org
Chris H, January 14, 1999 - Hi all, My name is Chris H. I have CHF and cardiomyopathy with an EF of 10%. I am considered a stage 2 and was at the doctor's today, and now have been put on Coreg. I was wondering if anyone out there that is on this drug can let me know how long it took them before this drug started to take a positive effect. From what info I am gathering, it could be up to 4 months. Is this correct? Any feedback would be greatly accepted. Thanks. email@example.com
Kelly, January 14, 1999 - Hi, Other than prayer, does anyone have any suggestions that can prevent me from being so scared? I believe this is causing me more problems than my CHF. I take sedation medication but it doesn't stop. I just don't want to have another attack. Please reply. firstname.lastname@example.org
Tom S, January 14, 1999 - Hi, For those of you who are not pure of heart and have been condemned to the no salt hades, may I recommend 3 Web sites from which you may glean not only "no salt" but possibly "low salt" and a multiplicity of recipes for cookies, breads and pies. I direct you to http://www.cookierecipe.com/, http://www.breadrecipe.com/ and last but not least http://www.pierecipe.com/. Fun, fun, fun with a yum, yum, yum. If you want even more recipes plus all the above, surf over to the parent site at http://www.allrecipes.com/.
Candy's January 14 reply to Bill D's January 12, 1999 - Hello Bill, I know it sounds like I was applying for Medicaid but I was talking to the Social Security Administration. I believe the person who took my application for SSD said there was a state program called SSI. So I could have been applying for Medicaid, although the person connected me to another worker in the same building. I won't be eliglible for Medicaid until I no longer get insurance through my work.
You're right about my physician though, she really should take more concern about what is going on with me. I have an appointment with my cardiologist in the beginning of February. It will be the first time I have seen him since my hospitalization and I have a bunch of questions for him. My daughter, who is quite concerned and quite involved, will be in on that appointment so she'll ask what I forget to ask. The main one is whether or not I'm stable at this time or improved. I'm not kidding myself about improving much but I don't want to regress, so I'll be satisfied with maintaining the same status for now. I'll also ask him about my feet. After all, he is the one who said the numbness, aches and pain wasn't caused by the hardening of my arteries and scar tissue in my groin. This was the result of cobalt and radiation for cervical cancer at 28. He said it was from the bulging disc in my back. The rehabilitation specialist said it was caused by my muscles and ligaments in my back becoming deconditioned after my CHF started. They all agree on one thing and that is exercise and attitude will help me recover to my maximum, whatever my maximum might be. CMPotila@aol.com
Jon's January 14 reply to Candy's January 14, 1999 - Hi Candy, There is a program called SSI from Social Security. SSI stands for "Supplemental Security Income." As I understand it (I haven't researched it), it is separate from Disability, is designed for people with very low income, and provides food stamps and other assistance for those who are in dire straits financially. You can find info about SSI at: http://www.ssa.gov/OP_Home/handbook/handbook.21/hbktoc21.htm. Medicare will kick in for you automatically after 2 years on Social Security Disability. There are many SS links available at my Disability page. Jon.
Muriel's January 14 reply to Henry T's January 7, 1999 - Hi Henry, Take Pete and Jon's advice seriously, even in areas not as cold as Wisconsin. My husband had breathing problems here in Tennessee before it became very cold. I always got the car warm before he came out and he covered his mouth and nose to keep the cold air out of his lungs. The day he was carried to the hospital, I covered him with a blanket and he pulled it over his mouth. He died on the way to the hospital. It was a chilly morning and I feel that they took the covers off and his heart stopped. I am probably the least sick of those here but I have breathing problems on cold mornings going down the hill to my mailbox. It takes perhaps 10 minutes to begin breathing normally.
I've been reading the comments regularly and hear from several of you. I have been in Wisconsin visiting my older daughter and her family for Thanksgiving. Then at Christmas, she was on duty in Florida (Air Force). Another daughter and I went down to stay with her while her husband and son visited a sick member of his family. I have had a cold/flu/allergy since November. Some days bad, some worse and others a let up. The doctor took me off a couple of medications and put me on Plendil yesterday. I think some of my ailments were due to allergy to a couple of medications. The only problem so far is a refrigerator full of Ruby Red grapefruit which I am advised not to eat while taking this medication.
The first couple of months, I was so busy handling Ned's affairs that everyone commented what a brave woman I was to handle his death so well. Now that most things are taken care of and people are not calling as much, I have been fighting depression. The doctor told me to get in touch immediately if I feel I can't handle it. I do miss Ned so much. I'd like to close the door on everyone and everything. I hate preparing food - it tastes terrible and I have to eat it for days - and I can't get energy to do anything. So much for the brave woman. I am to start my volunteer work as Ombudsman in some of the nursing homes. I hope I can get my mind off myself and think of what other people have to go through. I hope I can help others in some way.
Many thanks to all of you who have stood by me, prayed for me, sent me humorous stories. I am praying for Jon and his family and others of you. I notice that many of us have a little more understanding of our need for the help of a higher power and I hope that we can encourage others who are trying to find their way through the tragedies they are undergoing. I am about to be cut off. I do not have the equipment to get into the chat sessions. I hope to be able to do something about it by summer. Love, Muriel. email@example.com
Patricia G, January 14, 1999 - Hi, I have been negligent in not writing before with my news. I finally got in to see my new cardiologist for a second opinion on my DCM/CHF. My last echo, from the old cardiologist, had shown that my EF was normal and that the cardiomyopathy had resolved itself. That doctor suggested I continue the meds and call him in a year. He had not even called me with the good news. He faxed it to me! The new doctor says that the same thing has happened, from reading the reports, and took me off the K-Dur, Lasix, Coreg, and Lanoxin. I was very scared to do that but I am feeling great. I titrated down on Coreg until I got off it about a week ago. The rest, she told me to quit taking immediately. I still take my Norvasc and my Accupril. My blood pressure is now lower than it has been during the last 2 years, and I am feeling great - just apprehensive! I am to have another echo done in March to make sure everything is still going great. I don't know how all this has happened to me, except through divine intervention, and maybe the 360mg of CoQ10 I take. I still take that and will continue to take it forever. If anyone at Jon's Place has not read the Keats Good Health Guide, Coenzyme Q10 and the Heart, by Stephen T. Sinatra, I beg you to do so. It sounds like no one with heart disease should be without CoQ10. Please read it for the information and for your own good health. Then, make your own mind up about using it. I pray for each and every one of you. God isn't finished with us, yet! Patrigil@aol.com
Jon's Note: Congrats!
Elaine S, January 14, 1999 - Dear Jon and all, Thank you for being there. I am really grateful to have found you. I'll post more another time. firstname.lastname@example.org
Ruthie A, January 14, 1999 - Hi all, Thanks to those who e-mailed me with suggestions. I appreciate it. After talking with my doctor, we have decided to treat my CAD symptoms medically until my regular insurance starts next November. If we run up against complications between now and then, we will deal with them as they come. In the meantime, I just can't seem to throw off the infection. After 4 doses of antibiotics, we find that I now have a bladder infection. Bummer. With all the illness and extra meds and life in general, my BP was 190/110. Mercy! It's a wonder I was still able to walk and talk coherently. So now I have a new drug, clonidine, in the form of a transdermal patch. It's used when BP won't come down easily. It makes me so terribly sleepy that I'm nearly spacy. The doctor hopes the effect will wear off as I adjust to it. Is anyone else on clonidine? Have you had any problems with it? Take care and keep warm. Ruthie A. email@example.com
Vic S' January 14 reply to Bill D's January 13, 1999 - Hi, Thanks for the information. I'm not on a regulator, I don't think. I take Isordil, Lasix, Lanoxin, Prednisone - for rheumatoid arthritis, Prinivil and Cozaar but they probably will inject me. I have had both legs amputated due to cardiovascular problems so I'd have some trouble with the treadmill. firstname.lastname@example.org
Jon's January 14 reply to Vic S' January 14, 1999 - Hi Vic, That explains the Persantine test. Like Bill said, Persantine chemically stresses the heart, causing it to simulate the effects of exercise without you actually doing the exercise, so no treadmill is necessary. They should have another injectable drug standing by to stop the stressing effects of the Persantine, just in case it makes your heart work too hard. Jon.
Pete E's January 14 reply to Chris H's January 14, 1999 - Hi Chris, welcome to Jon's Place. If you have to join this club, you have found the right clubhouse. Jon has compiled a ton of information for people just like you. My EF was 10 when I started on Coreg. I was tested after about 6 months and showed improvement. It is hard to tell if it took this long because I don't get tested more often. For the hope department, my EF went up to about 27 and is hanging tough. Keep on the low sodium diet and follow your doctor's orders about exercise and medication. If you have any questions about your treatment, this is a great place to ask. If you need help with your low sodium diet, check out http://www.healthyheartmarket.com/. Peiden@skypoint.com
Jon, January 14, 1999 - Hi everyone, I can't place the e-mail address with the name (CHF memory) but would "email@example.com" (I think) please e-mail me? I have some rheumatoid arthritis info for you. Jon.
Pete E, January 14, 1999 - Hi, I just visited my family doctor today. As regular readers know, I had my tests last month and started taking Cordarone. I have not been feeling well and I thought it was a reaction to the drug. My question is based on the doctor's observation that he heard what he calls the extra beat or third beat. This went away over 2 years ago and seems to be back. Does anyone know what this means or has had a similar experience? Peiden@skypoint.com
Jon's January 14 reply to Pete E's January 14, 1999 - Hi Pete, I sometimes have what is called a third heart sound. I used to also have a fourth heart sound. My cardiologist is happy when he does not hear them but he doesn't sweat bullets when he does, so I don't either. <G> These sounds are called S3 and S4. I have some info about them from Medline, but it is pretty complex. If you want this info, let me know, and I'll e-mail it to you. Believe it or not, many children and teens have these extra heart sounds but as they become adults, they lose them entirely. In adults, a third heart sound (or fourth) usually indicates reduced left ventricular function - us! Jon.
Anne M, January 14, 1999 - Hi, I just discovered this site and I am so pleased! I was diagnosed with CHF in September and have been on a regimen of Vasotec, Lasix, Digoxin and potassium since. I am part of a Heart Failure Clinic and just started 2 new treatments this week. My EF is only 8 to 10 and I have been reading everything possible to try to get better. I was started on an experimental drug on Monday that will prevent adrenalin from being released into my body - that is, if I don't have the placebo! The other new treatment is oxygen. Our hospital has been doing research into the effects of oxygen on CHF. They believe there may be an improvement of 8 to 10% in EF. Having read the information posted about the use of oxygen, I am shocked. There has been no mention of becoming dependent by the hospital. That is a question I will have answered before I start. I am to use an oxygen mask at night. This will alleviate the stress on my heart muscle as I was tested in a Sleep Lab and have some sleep apnea due to the HF. I would really appreciate chatting via e-mail as I do feel very isolated with this medical problem. It has turned my life around as all the activities that I used to do with ease are not possible now. I plan on doing one thing a day - a doctor's visit or even just going for a haircut. Then it's back home for a nap! I have been told that it takes a lot of time to recover but I am now starting to feel impatient with all the necessary rest, and the inability to do much anyway. Does anyone have any suggestions? Thanks, Anne. firstname.lastname@example.org
Jon's January 14 reply to Anne M's January 14, 1999 - Hi Anne, Welcome to Jon's Place. I think we are all interested in the effect of oxygen on mild to moderate CHF. The caution about its use is mainly in those patients. It is known to be good for severe CHFers, with EFs as low as yours, because such low heart output doesn't get enough oxygen from the lungs to your organs. I think there is definite hope that it will help you. :-) Actually, I think most of the caution in mild to moderate CHFers is due to the mechanics of blood flow, called hemodynamics. Doctors aren't sure if oxygen helps or hinders good hemodynamics in these CHFers. This is more of a concern than getting dependent. We won't really know until trials are done, or should I say if they are done. Keep us posted, please. Jon.
Bev T, January 14, 1999 - Hi all, I've been feeling pretty well lately but have developed one problem - fluid (a 4 letter word, right?). Anyway, I get the sweats with it. I suspected the sweats were connected to the CHF but my doc ignored me and wanted to send me to a gynecologist. I got to chat this evening and found out that lots of folks get the "sweats." Are there any suggestions as to what might be done about these or do we just have to live with them? Thanks and may your angel be close to you. Bev. Mtnmama008@aol.com
Tina's January 14 reply to Jennifer R's January 10, 1999 - Hi Jennifer, I am 21 and was just told that I have post-partum cardiomyopathy. I just had a beautiful baby boy on October 16, 1998. My EF was only 23% when I was first told but on Christmas Eve, I was in the hospital because I also developed myocarditis. My cardiomyopathy has improved about 25%, my doctor told me. He also told me that I can recover in about 6 months the same as you, but I guess I have to wait and see. I am very scared and overwhelmed. I would really like to speak to you more. I do have a lot of questions and we both can use the support. email@example.com
Rick M's January 14 reply to Kelly's January 14, 1999 - Hi Kelly, Since I don't have any insight into what it is you're scared of, I can only assume that it has to do with either pain or death. Am I close? Are you young or old? Have you had CHF very long? I remember a phrase from the Funeral Mass, "In life we are in the midst of death." This is wisdom from the ages, because everyone dies. Sooner or later, everyone dies, including fathers, mothers, sisters, brothers, rich or poor, young or old, ready or not. Having CHF is really a blessing in a way because it gives us plenty of time to prepare ourselves, time to mend fences, right wrongs, do something nice for someone. In a way, we're out of the race. We don't need pagers or cell-phones because anyone who wants to call us knows where we are. So Kelly, lighten up, we all know it's coming, we just don't know when. If we did know, what would we do with the information? Live every day as if it were your last because one day it will be. Now, don't you feel better? firstname.lastname@example.org
Bill D's January 14 reply to Kelly's January 14, 1999 - Hi Kelly, Just about all of us, when we were first diagnosed, figured that the ball game was over. We put our affairs in order and settled back, waiting to die. Years and years later, we're still waiting! Welcome to the "Death's Door Club." You'd better not be a rush to get in. The line starts in New Jersey but the door is in Wyoming! Five years later, shuffling along, I've only made it to Ohio! <g> Seriously, you'll have to tell us about yourself. We need to know all about you, what your cardiologist said, and how you are feeling. Did they give you something like Prozac or Zoloft to keep you from having anxiety attacks? Welcome to our leaky old boat. We all know how it is and if you help us bail, you're welcome aboard! <g> You won't believe it now but in time, you'll be answering somebody else who is in the same fix you are! Bill. email@example.com
Bill D's January 14 reply to Chris H's January 14, 1999 - Hi Chris, Coreg is tough on you only if you have low blood pressure or pulse before you start. I never noticed any side effects at all! Folks who's diastolic or BP are near 60 have problems getting used to it. What are yours? Jon has plenty of information about it if you look under "Site Index." There's a link to it at the top of this page. Bill. firstname.lastname@example.org
Bill D's January 14 reply to Candy's January 14, 1999 - Hi Candy, Please look at the information Jon showed you. Many of us have had SSD turn us down after months of waiting. One of those lawyers who specialize in SSD and SSI might be worth his 25% of the first check you receive. I'd hate for a faceless bureaucrat to botch you up. Bill. email@example.com
Renee, January 15, 1999 - Hi, I just discovered this area and intend to keep posted to it. I'm 65, have CHD, CAD, diabetes, atrial fibrillation, and am feeling a need to know more about CHF especially. I also have difficulty recognizing the limitations it puts on my life and I am resistant to them, so generally, I either overdo or can do barely anything. Anyway, I'm glad I discovered you and will keep posted.
Nanc, January 15, 1999 - Hi everyone, I was hoping to have some good news about Liz by now but she is still having a very hard time of it. They x-rayed her stomach today and are taking care of an obstruction, which is the latest probalem, and she is still on a ventilator. She continues to need our prayers. Thank you all for being there for her. Hugs requested <g>, Nanc. firstname.lastname@example.org
John S' January 15 reply to Kelly's January 14, 1999 - Hey Kelly, Is there a reason to be scared (if so, I'll be scared with you), or is this emotional panic? Can you be around other people so that you can visit and get your mind off things? Can you ride or sight-see in a car? Do you have a dog or puppy who loves you and plays with you? Are you far from the hospital? What kind of things would you need close by to comfort you - oxygen, blood pressure monitor, etc? Do you have any music you can prop yourself up, sit very still and listen to? Can you see or know somehow if the medicines are helping? Do you know how strong the body is and how hard it will fight to get well? Are you new to this, or experienced? When do you feel this - at day, night, or all the time? By the way, regardless of everything that may be happening to you, you can still make plans for the future. You have to be heading somewhere, you have to want it. Nature hates a vacuum and it will rush in to fill the space of the things you want. JohnStewart@worldnet.att.net
Pam E, January 15, 1999 - Hi all, I am feeling a little stressed at present. I had the 24 hour BP monitor on Tuesday. They called me at work today as they want to redo it. The readings they got were extremely too high and they are hoping that something went wrong. I am not looking forward to this as my arm is just recovering from the last one. Maybe the bruises will be gone by Tuesday. This should not be a major test but for me, it is worse than the echos and the GHPS I face each year. Sorry, this is not probably worth talking about but it is my crisis at present. Pam E from Australia. email@example.com
John S' January 15 reply to Jon's January 13, 1999 - Thanks, Jon. I like what you have to say. I did discuss the oxygen with all the doctors, and got a general answer of, "That's one of those things that may or may not help." No one said stay away from it. I don't abuse it and a tank may last 2 months. Before diagnosis of bad heart valves, sleep studies showed I was shutting down at night a lot anyway. I had no insurance, and am on cash-only basis for meds, hospital, oxygen, everything. There are no companies or institutions providing the $34/month equipment rental. The $250+ per month for meds, and the $1700/month payments for physicians and hospital are all out of pocket. If it didn't help, the oxy would go. My wife and I are doing fine, as long as my regimen keeps me working while I improve, which it has. My regimen is "Time, Diet, Exercise, Meds." As for the Coreg comment, my doctors work at the Texas Medical Center Division of The University Of Texas, and across the street at St. Lukes/Heart Center, and they are only in research, not general practice. They are using micro-laser to poke holes in hearts to purposely leak blood to bring dead heart walls to life; they are embedding tiny thermocouples, because they found parts of the cardiovascular system heat up before a stroke, attack, or even cell death, and they are currently testing a new Thallium derivative, non-invasive 3-D digital full body display computer device, which allows a view of your whole body circulation in action, and zoom in to see every little part. Some of these guys like Coreg, but not all. The med seems to provide stronger side-effects to younger people and for some reason, me. Beta-blockers block or restrict movement, and I didn't see anything on your Coreg page to dispute that. This is the reason for titrating, because Coreg for instance, can cause temporarily worse CHF. Anyway, I wasn't talking only about Coreg, but the attempt prevent scarring. Please forgive me if we didn't connect right. Thanks. JohnStewart@worldnet.att.net
Jon's January 15 reply to John S' January 15, 1999 - Hi John, You'll see a lot of my posts appearing that are "devil's advocate" statements. It's about the only way I can think of to forestall answering the same question dozens of times over the next day or two by e-mail. <G> We have a few other regulars who have no insurance and man, oh man, that must be a tricky path! I wish you the best keeping costs under control. None of the researchers or docs have fully explained (because they don't really know) what the precise reasons are that mild to moderate CHFers shouldn't take oxygen. They just always stress caution about using it in the absence of compelling need. I use an oxygen generator and that's why it was so expensive. That TMLR procedure you describe is interesting and some of our readers have had it. That's the cool part of this place - I get to meet people who have actually had these procedures and get real first hand descriptions of their experience. Watch out for the researchers though. I have talked with some famous molecular biologists doing CHF research who don't know much about CHF! <LOL> Jon.
Ricardo Arevalo, January 15, 1999 - Hi everyone, I'm 45 years old, married with 3 kids, from the Philippines, and have liveed a very active life. Five years ago,
my x-ray revealed an enlarged heart and that I have a mitral valve Prolapse. My cardiologist told me to slow down and put me on a daily dose of Renitec and Lanoxin. Believing exercise is the best medicine, my weekly 2-hour jogging and sometimes mountain climbing/trekking continued. Then came the most disheartening moments of my life. Last October, I was brought to the ER due to shortness of breath and congested lungs, later diagnosed to be CHF. I was confined for 6 days. My echo reports severe mitral regurgitation and severe aortic regurgitation. LVEF was 76%. My cardiologist recommended valve (2) replacement. I was down to 130lbs from 150lbs and I don't know if this was due to the diuretics I'm taking to drain excess fluids in my body or due to stress in thinking of what lied ahead.
Last December, I went to another hospital for a second opinion and my echo still showed severe mitral regurgitation but the aortic regurgitation is now mild. My EF is 83%. Per cardiologist/surgeon, there is a possibility that only the mitral valve will need replacement. My medicines are 25mg Lanoxin, 25mg Cozaar and ½ tablet Aldazide daily, and 330mg L-Carnitine twice a day. So far, my condition has slightly improved but I still encounter that mild shortness of breath once in a while and my big problem right now is how to get a good sleep. Any suggestions?
Other questions include: What is the right time to get valve replacement? How come my EF is above normal considering some valves are leaking? Last, I'm really grateful to have found this forum and thank you everyone for all the info. God bless us all. Ric. Ric_Arevalo@yahoo.com
Candy's January 15 reply to Bill D's January 14, 1999 - Hi Bill, Thanks for the advice. You bet I'll be real careful about what I'm going to do. As it is, my income is going to drop considerably when I quit work, so I want to get the maximum amount I can when I leave. Faceless and nameless bureaucracies are tough to deal with at times. I'll get the lawyer so I'll be up to the task. CMPotila@aol.com
Melanie K, January 15, 1999 - Hi, My name is Melanie Knapp and I am a Nursing student at Georgia Perimeter College. We were put into groups at the beginning of this semester, and assigned a semester long project. My group's project is CHF. We are doing a good job collecting our medical data, but part of our project needs to have Nursing Interventions. I am hoping that some of you out there who have CHF would be willing to share with me your experiences that you have had with nurses while being treated for CHF, good and bad. If there is anything in particular that a nurse did that helped you with your CHF, or if a nurse did something that wasn't effective, made you mad, hurt your feelings, etc, I would really appreciate your input. Thank you so much for allowing me to post to your board, and I look forward to hearing from some of you. Sincerely, Melanie Knapp. Knapps3@aol.com
Jon's Note: Please reply to Melanie by e-mail, not post. Thanks.
Margie F, January 15, 1999 - Hi, Since my last post, I've been feeling better. Boy, did I really sound down! Thanks to everyone for their concerns. I had a checkup at the CHF clinic and my doctor said I was doing good. Now that my heart rate is better (AICD), they will start to increase my meds for maximum benefit - my Coreg up to 6.25mg twice a day, plus dixogin once a day. So far, so good. My pro-time tests have been scaled down to once every 3 weeks - finally, less needle pricks. What do they do when they run out of room (because of scar tissue) on your arms? I don't even want to think about them going other places. Ugh. Bless everyone here at Jons Place. Margie F. MFisher238@aol.com
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.