Phyllis A 9-16 best wishes to Joy
Tom S' 9-16 reply to Art D's 9-15 I agree & more
Tom S 9-16 what's the roll-over prize?! <g>
Jon's 9-16 reply to Tom S' 9-16 not yet!
Virgen 9-16 got CHF, now am pregnant - what to do?
Jon's 9-16 reply to Virgen's 9-16 pregnancy during CHF, what to do?
Phyllis A's 9-17 reply to Virgen's 9-16 prayer & faith are keys
Kim S' 9-17 reply to Virgen's 9-16 coping with pregnancy & CHF
Donna 9-17 will Y2K make getting meds tough?
Tom S' 9-17 reply to Jon's 9-16 yikes! I may not make it
Dee K's 9-17 reply to Virgen's 9-16 we're with you & more
Lydia Moore's 9-17 reply to Virgen's 9-16 trust in Christ!
Connie R 9-17 update, Coreg, daughter's new job & more
John Len's 9-17 reply to Tom S' 9-16 about that prize,...
Joy R 9-17 update on hurricane results
Robin P's 9-17 reply to Virgen's 9-16 coping with hard times
LeeAnn D's 9-18 reply to Virgen's 9-16 looking for information & support
Luc D 9-18 I'm back online & have new address
Sharon J W 9-18 low sodium eating, info sources & more
Tom S' 9-18 reply to John Len's 9-17 thanks for the offer but,..
Lori P's 9-19 reply to Virgen's 9-16 it's your decision to make & live with
Joyce 9-19 is fatigue as only symptom something to worry about?
Joe S 9-19 made the move, medical record shows bad doctor's decision
Helen O 9-19 update, test results
Jon 9-19 request for posters
Jeanette 9-20 update, thanks
Ben B's 9-20 reply to Joyce's 9-19 EFs, echos & more
Leland Y's 9-20 reply to Luc D's 9-19 importance of attitude, drop me a line
Jon's 9-20 reply to Joyce's 9-19 follow-up doctor visits
Cecil C 9-20 a-fib & cardioversion questions & more
Jon 9-20 need some new e-mail addresses for these bios!
Jon 9-20 has anyone heard from June?
Joyce's 9-20 reply to Jon's 9-20 thanks, I'll be asking my doc
Allen Cravener's 9-20 reply to Cecil C's 9-20 a-fib & cardioversions
Janet S 9-20 radionucleide ventriculography question
Jon's 9-20 reply to Janet S' 9-20 that's a MUGA - read this & more
Chyrise 9-20 systolic BP & CHF question
Pam E 9-21 be away for 3 weeks in Tasmania
Cindy M 9-22 can anyone scan a pic for me, please?
Judith Gail 9-22 intro, heart attacks, second opinions & more
Christy M 9-22 how much to pay for medical record?
Jon's 9-22 reply to Christy M's 9-22 paying for medical record
Gatha E 9-22 I'm back from vacation!
Gerald F 9-22 tornado got house & pooter but I'm back
Pat's 9-22 reply to Christy M's 9-22 paying for medical record
Donna R M's 9-22 reply to Christy M's 9-22 paying for medical record
Betty Brown 9-23 questions about surgery, CHF
Will W 9-23 moving, will be offline for awhile
Leeann D 9-23 question about ACE inhibitor cough & more
Claudia S' 9-23 reply to Christy M's 9-22 paying for medical record
Cindy M 9-23 thanks for the scanning offers!
Harriet 9-23 ordering medical records, easing turbulence
Rick Stahl 9-23 suffering edema & seek advice
Jon 9-23 getting copies of my medical record
Jon 9-23 anyone heard from Lee R or June Jackson?
Debbie Herrman 9-24 does anyone take Coreg? any Catholics here? & more
Crystal 9-24 moved, having nosebleeds
Linda J 9-24 going into hospital, Gatha & more
Bill L 9-24 EF thoughts
Bobby Farish 9-24 update, Disability
Joe 9-24 paying for medical record
Karen K's 9-24 reply to Rick Stahl's 9-23 you need to see a doctor right now
John Len's 9-24 reply to Rick Stahl's 9-23 health insurance
Beth for Sharon J W 9-25 Sharon is in hospital, seek amiodarone & EPS info
Joe S' 9-25 reply to Rick Stahl's 9-23 health insurance
Jon's 9-25 reply to Joe S' 9-25 health insurance
Krnlueez 9-25 glad I found you
Lee R 9-25 I'm still here! & more
Lori P 9-25 does CHF affect speech?
Jon's 9-25 reply to Lori P's 9-25 my wife's experience
Rick M 9-25 have medical record, will travel - question
Bobby Farish 9-25 a poem
Phyllis A's 9-25 reply to Debbie H's 9-24 catholicism & saints, weight loss question
Maureen 9-27 now have MS too - anyone else? & more
Ben B's 9-27 reply to Sharon J W's (Beth's) 9-25 EPS studies' usefulness
Pat L's 9-27 reply to Lori P's 9-25 asking questions is always good
John Len's 9-27 reply to Rick M's 9-25 hey, miracles still happen
Al H's 9-27 reply to Rick M's 9-25 getting those records
Brenda 9-27 my heart problems scare me
Michael C's 9-28 reply to Cecil C's 9-20 a-fib pacemaker/cardioverter, cardioversion
Eva Moubray 9-28 CHF & weight gain questions
Jon's 9-28 reply to Eva Moubray's 9-28 CHF & weight gain, update
Jim M 9-28 intro, bypasses, seek correspondents
Joe S' 9-28 reply to Maureen's 9-27 my prayers are with you
Susie T 9-28 heart rate weirdness, BP & more
Jon's 9-28 reply to Susie T's 9-28 check into a Holter monitor
Donna 9-28 intro, does Coreg make me this tired?
Lee R's 9-28 reply to Ben B's 9-27 ICDs & EPS value
Jon's 9-28 reply to Lee R's 9-28 ICDs & EPS value
Eris 9-28 cough & Coreg or Aldactone questions
Tandy K 9-28 questions about strange fever symptoms
Linda S' 9-28 reply to Brenda's 9-27 life after bypass surgery
Danny S 9-28 questions about breathing volume test
Lydia Moore's 9-28 reply to Brenda's 9-27 familial heart problems, tests, docs & more
Brenda 9-28 update, support, fear & more
Jon's 9-28 reply to Brenda's 9-28 welcome, diagnosis, coping & more
Bill L 9-28 EF versus "real" life
Jill S 9-29 Coreg, & appetite & weight gain question
Rick M 9-29 coping with CHF, weight gain, diet & more
Jo 9-29 intro, vitamin B questions & more
Jon's 9-29 reply to Jo's 9-29 chat rooms, message boards & more
Ben B's 9-29 reply to Lee R's 9-28 EP studies
Henry T 9-30 anyone had Aldactone side effects?
Jon's 9-30 reply to Henry T's 9-30 only one here
Shirley G 9-30 what are EPS & EP?
Jon's 9-30 reply to Shirley G's 9-30 EPS & EP
Lydia Moore's 9-30 reply to Jill S' 9-29 Coreg, CHF, appetite & weight gain
Sherrell G's 9-30 reply to Ben B's 9-29 EPS & ICDs
Judith's 9-30 reply to Lori P's 9-25 speech stumbling a problem & more
Virginia R's 9-30 reply to Jill S' 9-29 weight gain & Coreg
Linda 9-30 update, losing blood, neat prayer poem
Phyllis A 9-30 prayer request for my dad, having surgery
Harriet's 9-30 reply to Jon's 9-29 RLS experience, & to Jo
Phyllis A, September 16, 1999 - Hi Joy, I pray that you and your family are well through this hurricane Floyd, and I pray that it doesn't affect your business. God bless. firstname.lastname@example.org
Tom S' September 16 reply to Art D's September 15, 1999 - Well put Art D, I would have to echo your sentiments concerning Jon's Place and the folks that inhabit this region of the Net. It is also one of the few forums on the Net in which the moderator excels at maintaining a high level of civility among a group of folks who would seem to have every excuse in the book to be otherwise. Nice to hear from you again Bigdog! May you continue to enjoy the success modern chemistry seems to be giving you. email@example.com
Tom S, September 16, 1999 - Hey Jon, I just rolled your counter to the 200,000 mark. Do I win a prize or at least a bogus Florida or Vegas vacation?! firstname.lastname@example.org
Jon's September 16 reply to Tom S' September 16, 1999 - Hi Tom, Ya gotta roll-over both page counters! Jon.
Virgen, September 16, 1999 - Hi Jon, I'm a 43 year old mother, worker, and wife. Last May I was diagnosed with CHF and cardiomiopathy. I'm still struggling with myself trying to accept my condition. Sometimes I forget I have it. Before my first week in the hospital, my husband and I were having serious problems in our marriage; each one busy with others things, not taking care of each other. I even was considering getting separated. Well, after this crisis, we have learned to stop and think about what really is important. So with the help of God and my family, through prayer we are together again.
He has been a big support, really showing me he loves me and I know in my heart that I also love him very deeply. God is with us, I feel it.
Now I have another problem. I think I am pregnant! I'm so scared! My doctor said that I can't have more children and that it is a matter of life and death. Please pray for me. I'm so confused. email@example.com
Jon's September 16 reply to Virgen's September 16, 1999 - Howdy-doo, Welcome to Jon's Place. Although your doctors are there to give you sound (hopefully) medical advice, they do not know the future and they cannot predict outcomes, only give you educated guesses. It is your body. The child is yours and your husband's, not the doctor's. You and your husband have to make the decisions about your child, keeping your wellbeing in mind. So my first piece of advice is, "Don't let any doctors push you into any decisions, about you or your child." Listen to them but keep in mind that they are men, not gods. It's the lives of your family at stake, not theirs..
To ramble on, if you worked out your differences with your husband through a turning to God and through sincere prayer, why hesitate to use a proven method - a method you already know gets you through tough times and hard decisions? Get on your knees and get serious in your prayer. The power of a husband's prayer is multiplied through the partnership in that prayer of his wife, and vice versa. Pray together! I cannot stress enough the importance of praying together and out loud. Matthew 18:20
"God is not the author of confusion, but of peace," 1st Corinthians 14:33. When you do reach a decision - a correct decision in God's eyes, not mine or yours - you will know it through a calm steadiness that was lacking before: a peace. It will come if you let it. Just remember to set aside your own priorities and concerns, and focus on what God wants to do with your life, not what you want to do with it. You'll be a lot healthier and happier carrying out His will than yours, this I know.
At the same time, be assured that you should indeed seek out all the facts you can find on pregnancy in women with CHF. Truth is never to be feared. While sifting facts you find and while focusing your prayer alongside your husband in search of your way, remember that God is with you through Jesus Christ. He's on your side! (Romans 8:31) The whole time you agonize over decisions, He is right there, ready to take your burden and replace it with His, light and airy and sweet of scent. He's on your side and all you have to do is give yourself over to Him and He will see you through these difficult times.
We're here to support you and pray for you. God loves you. He loves your child yet in the womb. However, the decision to really give yourself over to Christ and reap the peace and assurance of decisions well-made is yours. Please make it soon. Jon.
Phyllis A's September 17 reply to Virgen's September 16, 1999 - Dear Virgen, Jon could not have put it any better. I was also thinking that if you and hubby trusted in God to get you two back together in love, then why not trust in Him to get you through this hard decision. Give it to the Lord and trust He will guide you to the right decision. He is there for us always. God bless. firstname.lastname@example.org
Kim S' September 17 reply to Virgen's September 16, 1999 - Hi Virgen, I have sent you a personal e-mail but would like to post here that Jon is so true in what he is saying. God is the giver of life. He makes no mistakes and is the one and only true healer. Becoming agonized over statistics and researched data can sometimes be misleading in what is meant to be. When I became ill, not only at a happy time in my life (pregnancy) but at a very young age, I could not help but turn to the Lord and spend time in prayer. I immediately came away from the hospital with an overwhelming sense of peace. To this day, I continue to have that peace. For some, that is a hard thing to understand but for me, it is the only thing that has kept me sane and my feet secured to the ground in this past year. It is important to research and educate but more important to pray without ceasing and keep connected to the Lord. May the Lord bless you, your baby, and your family during these trying times. email@example.com
Donna, September 17, 1999 - Hi everyone, I was diagnosed with CHF in March of 1997. I continue to take Coreg, Lanoxin, Vasotec, CoQ10 and vitamin E. I have improved from an EF of 18 to 59. My cardiologist says my heart looks normal again. We decided to continue with all medications for at least 3 more years. My doctor says he honestly does not know if the medicine made me better or if I just got better so he does not want to stop any medicines. I do feel a lot better than a year ago but I am not back to normal, whatever that is. I still get very tired and out of breath. I have read this site for over 2 years now but have only posted once about a year ago. I was wondering what everyone thought of the y2k talk and if anyone is worried about getting their medicine in 2000. On my last visit, I asked my doctor what he thought and he said if it worried me to come see him in November and he would give me some extra medicine. I honestly do not know what to expect in 2000 but I do know I do not want to run out of medicine. What does everyone else think? Please let me know. Sissy5150@aol.com
Tom S' September 17 reply to Jon's September 16, 1999 - Darn! Only two thousand eight hundred and sixty three more visits to go. Sheeesh, I'll wear out my clickin' finger afore I kin dew dat. firstname.lastname@example.org
Dee K's September 17 reply to Virgen's September 16, 1999 - Hi Virgen, please read and reread what Jon had to say. God is still in the miracle business! And every prayer is heard. "A three cord rope can't be broken," so with you, your husband and us, that's more than a three cord rope of prayer. Your heart will give you the right answer. Your sister in Christ, Dee. DK1992@aol.com
Lydia Moore's September 17 reply to Virgen's September 16, 1999 - Hello Virgen, Jon could not have said it better. If God can heal your relationship, who is to say what else He can do? His ways are not our ways nor the ways of the world. I have had some miracles in my own life that have never ceased to amaze me. I know it is a tough decision, but I know that if you keep your eyes upon Jesus, pray with faith and trust in Him, He will give you the answers you need and you will have total peace. God bless, Lydia Moore. email@example.com
Connie R, September 17, 1999 - Hi everyone, I had some great news this week. My daughter is a charge nurse on the heart floor of our local hospital. She is giving that up to help with the heart failure clinic that is run by the hospital. This, of course, is close to her heart since her grandmother died of CHF, and her great aunt and her mother have heart failure. She is very excited about her new job. I have passed on this Website address to her and told her about some of the things that all of you have mentioned that have helped me over the past several months. I am now up to the maximum dose of Coreg that the doctor wants me on: 25mg twice a day. I am doing so much better. The biggest change I notice is that now I can walk to my car from my office without having to stop several times to catch my breath. My goal is to be able to go to more than one store on an outing. I'm not sure my husband is too anxious for that though. I think he's pretty grateful that I can't do much shopping. May the Lord bless and keep you all. firstname.lastname@example.org
John Len's September 17 reply toTom S' September 16, 1999 - Hi Tom, It just so happens that I have in my e-mail a genuine bogus trip to Vegas, the Bahamas, Baha or even Disney World! As much as I wanted to go, I will make the supreme sacrifice and donate them to you as your as a reward for your selfless work for the good or all humanity. ;-) John Len. email@example.com
Joy R, September 17, 1999 - Hello all, I just wanted to let you know we survived the hurrricane and our house came through without damage. Our yard was a mess with tree limbs and debris. To all of you who had to leave because of this storm, I hope your property was not damaged. I think it was a nightmare for most of the coastal residents who had to evaucate per governor's orders and then just sat in traffic. We were told to leave by the police but went by way of country roads to my husband's sister's house in the middle of the state, thus missing the mess on the interstate. My prayers have been with all who had to go through this ordeal. Joy R. firstname.lastname@example.org
Robin P's September 17 reply to Virgen's September 16, 1999 - Hi Virgen, I know that you are having a rough time right now but I agree with everyone else that you have to take it one day at a time. I have had cardiomypathy for 4 years. I was diagnosed during my last pregnancy. It is hard to deal with, but right now you need the support of you family and God to help you through it. Take care of yourself. My prayers are with you. Rputz70@aol.com
LeeAnn D's September 18 reply to Virgen's September 16, 1999 - Hi Virgen, At Kim's PPCM web site, if you want to read the old August posts, 2 women had the same decision to face, each with different problems and different answers. I don't know if this helps or not, but my doctors pinpoint my symptoms to my first pregnancy. I was most likely in CHF during my second, and was definitely in full blown CHF in my last pregnancy. The difference was it hadn't been diagnosed so I had no decision to face like you do. I absolutely don't know what I would have done. I found out 4 months after my last child. He's 2 now.
Of course, I wouldn't trade any of my 3 angels - even to get my health back! My prayers are with you and your family. LeeAnn, age 39, EF 30. email@example.com
Luc D's September 18, 1999 - Dear friends, I was off line for 4 days but it's all ok now. I have a new server connection. The other one didn't work anymore. I hope you all are doing fine. I also want to thank the people who have written me back. I wish you all the very best life can give you all. Your Belgian friend, Luc D. firstname.lastname@example.org and email@example.com
Sharon J W, September 18, 1999 - Hi all, I am very sodium conscious, as we all should be. For the newbies, see http://www.drkoop.com/ for a primer after you've read Jon's pages. There's also a book called "Get The Salt Out" filled with good info but be cautious about her free use of salt substitutes. Mrs. Dash makes many herb varieties, but this book gives you a recipe for one that you can make. I have contributed my very favorite "what'll I have" dish to the recipes. I have eaten it for breakfast, lunch and dinner on occasion. I look forward to the publication of the cookbook by one of our support team members. God bless! firstname.lastname@example.org
Tom S' September 18 reply to John Len's September 17, 1999 - Hi John, You are way too kind, but a prior committment to ill health mandates that I cannot accept your generous <g> offer. You may, with my full blessing, retain possession of the bounty from your apparently also-spammed e-mail address. Best wishes and good health to you. email@example.com
Lori P's September 19 reply to Virgen's September 16, 1999 - Hi Virgen, A few months ago I was faced with a similar situation. It was right after I received a mechanical valve in my heart. When I found out I was pregnant, the doctor gave me a pro-life speech and told me that my only option was to continue the pregnancy. I sought another doctor, who told me to make the decision on my own and that it was not impossible to have the baby, and he would back me up no matter what. The bottom line is, don't let anyone make this decision for you. There are great doctors out there and great medications that will help you through, no matter what you decide. Best wishes. Lori P. firstname.lastname@example.org
Joyce, September 19, 1999 - Hi, I have been lurking here since March, 1999. I have learned a lot. However I have not posted here until now. I was hospitalized 2/11/99 with CHF. My EF was 15%. I followed The Manual, let my family read it, and I am sure that is why I got into pretty good shape. I am in an HMO. They sent me to a cardiologist and he was good. I took a MUGA test and an echo. The echo is the only one that could identify my heart problems. In April, my EF was 35%. My problem is I went to the same doc on Friday. My blood pressure was good, I had no chest pains, and I am able to do moderate exercise but I still get so very tired.
I asked him to give me an echo and he said no. He said "you are doing great, you don't need a test. I care how you feel. If a test showed your EF was 20% then that is how you would feel. Just keep up the good work. You do not have to see me any more unless your HMO feels you need to." With that he left the room. Do you think I should tell my HMO to ok an echo? I think I really need to know my EF but I am doing well. I am free of all symptoms. I can walk 1 1/4 miles in 30 minutes but I still get so tired sometimes that I spend almost all day lying down. Please tell me if I am wrong on this. Is this tiredness a symptom that must be dealt with by a doctor? Or should I just thank God that I am symptom free? I hope this is not a stupid question. email@example.com
Joe S, September 19, 1999 - Hi, I tried to log a note yesterday but it didn't take. Well, I finally did it. I moved from a 250' elevation coastal town to a 5500' high desert town. If I and my entire family hadn't caught a horrible cold virus, I could tell you there were no breathing problems but I'm not 100% sure yet. I'll report in later. Because of the move, I received all my records from my doc and lo and behold, he knew I had CHF one year before he told me. My life would have been much better if I had known some of the things we've all learned at Jon's Place. It makes me a little angry. Joe S. JES@StevensonLighting.com
Helen O, September 19, 1999 - Hi all, I hope everyone is doing well. I just wanted to update you on the results of my blood tests. My thyroid function is normal and the test for high blood surgar, low blood sugar and diabetes came back normal: 4.6 and my GP said normal is below 7. Smiles and good wishes to everyone. Helen O, age 25, EF 25-30%. firstname.lastname@example.org
Jon, September 19, 1999 - Hi everyone, If you have problems getting my forms to send your post, please e-mail me at email@example.com and let me know, along with the time it happened, if possible. The forms server I use has just installed a new script and there have been some minor problems with it. Thanks, Jon.
Jeanette, September 20, 1999 - Hi all, I just wanted to let you know that right now all is well. My cardiologist said that even though I am throwing PVCs that I am ok. I would like to thank all of you for your prayers and e-mails. Thank you all for everything and I will let you know how I am doing often. I pray for all of us each day that you will be taken care of and that all have peace of mind. God bless and keep the faith. Jeanette. firstname.lastname@example.org
Ben B's September 20 reply to Joyce's September 19, 1999 - Hi, I think your doctor is probably right about this. I always felt exactly about as bad as my EF for about a month after the reading, then went back to feeling pretty good after that information wore off. I think one reading a year - after 6 months - is more than enough. In the first 6 months, I think they do them more frequently because they are looking for that miraculous recovery. After 6 months it may happen, as evidenced by some of the posts around here, but more often than not I think the EF just bounces around in a 10 point range. email@example.com
Leland Y's September 20 reply to Luc D's September 19, 1999 - Hi Luc, I have read many of your posts, especially the ones from way, Way, WAY back. You indeed are an old timer. I am a new timer, having posted 3 or 4 times since becoming sick in 3/99, but now I feel like an old timer. CHF can age us quickly if we don't use some kind of mind game to fight back, such as prayer, good outlook, high expectations, and not dwell on adverse possibilities all the time. I am so glad that there are some international posts. I do not use the chat room (but once), so I have not met the people in Australia, England and South Africa. I wish you the best of health. I hope to see you post more often, and if you wish to practice your English (which is already very good), please do not hesitate to e-mail me. Leland. LLYee@surfside.net
Jon's September 20 reply to Joyce's September 19, 1999 - Hiya Joyce, I agree with Ben about EF and echos. However, I am a bit disturbed about your doc not wanting to see you at least every 6 months. With an EF of 35%, up from 15%, you should be followed-up regularly, every 3 to 6 months, and you should have blood work done every 3 months to check your potassium levels and so on. Check into this, please. By the way, the only stupid CHF question is the one you never ask for fear of looking stupid! <g> Jon.
Cecil C, September 20, 1999 - Hi, So far this year I have been cardioverted 3 times to try to break out of a-fib. Each time it was only effective for about a month. My doctor had advised me not to request more and to pretty much accept the fact that I will have a-fib. Has this happened to anyone else, and did your doctor recommend the same? Does anyone know the effects of continued cardioversions? I have a very good doctor who is working hard for me but I'm curious as to what some of you may have experienced with a-fib.
Side note: I just had an echo and the readings ranged from about 26 to an occasional 42. The average, unfortunately, was about 28. The technician thought the higher readings might be caused by the a-fib. Does anyone out there have any thoughts? firstname.lastname@example.org
Jon, September 20, 1999 - Hi everyone, I'm, not very good at keeping up with e-mail address changes and like so many of us, my memory really stinks! So, while trying to check on some bios, I realized I needed a new e-mail address for these people:
If your name is on this list, please e-mail me with a new e-mail address as soon as you can. If you would like any changes made in your bio, please let me know that also. Thanks! Jon.
Jon, September 20, 1999 - Hi, Has anyone heard from June Jackson lately? Jon.
Joyce's September 20 reply to Jon's September 20, 1999 - Hi Jon, I love you. Thanks to you and all others who replied to my questions. I will see my primary physician at my HMO about this. I feel much better. I love ya'll. Joie6800@aol.com
Allen Cravener's September 20 reply to Cecil C's September 20, 1999 - Hi Cecil, I was cardioverted twice with no success. My doctor says I must learn to live with a-fib. A lifetime of Coumadin lies ahead for me. Allen Cravener. email@example.com
Janet S, September 20, 1999 - Hi, Has anyone ever had a test called a "radionuclide ventriculogram?" I have only one kidney and have been told by a GP to be careful of having tests involving injections but the cardiologist assured me it would have no damaging effect on my kidney. Has anyone had any experience with this? The nurse said it's like a thallium test without the exercise - can't be all bad! Thanks for any help you can give me. Janet S. firstname.lastname@example.org
Jon's September 20 reply to Janet S' September 20, 1999 - Howdy-doo Janice, That's the fancy name for Multiple Gated Acquisition or MUGA. You can read about it here. I would ask some very blunt questions about the injection because of your only having one working kidney. Any injection used for contrast has some risk in such a situation and you don't want to let a doctor blow off your concerns. They are prone to do that too quickly - after all, it's not their kidney. Jon.
Chyrise, September 20, 1999 - Hello, I have a general question about congestive heart failure symptoms. I was wondering if a low systolic blood pressure is an indication of the heart's pumping abilities. My systolic pressure (the top number) now runs around 102 whereas it used to be between 112 and 120. Do doctors look for a low systolic blood pressure when diagnosing heart failure, especially when it's become lower than it normally is? Thanks. email@example.com
Pam E, September 21, 1999 - Hi all, I'm just leaving a note to those who know me that as of Saturday I will be away for 3 weeks. I am going to Tasmania, if you haven't already heard. Take care, all. firstname.lastname@example.org
Cindy M, September 22, 1999 - Hi everyone, In response to Jon's request for updated bios, I sent mine in, but I was wondering if anyone out there would be kind enough to allow me to send them my mug shot to be scanned and added to the bios. I'd really appreciate it. If you can do this, please e-mail me privately at email@example.com. Thank you! Cindy M.
Judith Gail, September 22, 1999 - Hi Jon, I'm just a beginner here, and having found your site, I've now spent days reading and getting to know y'all. My CHF was diagnosed after insisting upon a second opinion back in April, 1993, already into a serious class 3 level. In winter of 1996 I was hospitalized again and an echo now showed 2 MIs. Over those years I continued to work (poorly) and was always trying to hide my fatigue, speech problems (I'd say similar words but out of context to the subject matter), and chest pain and breathing difficulties. Now that I have retired for the second time, things are certainly easier to cope with. I have discovered people generally feel uncomfortable if I mention my problem so I avoid the topic. Have others found this also? I've learned lots from your posts. I'd like to learn more and hear from others. Regards, J.Gail up in Canada. firstname.lastname@example.org
Christy M, September 22, 1999 - Hi, Does anyone have input on hospital facilities charging $1 per page for medical records plus a minimum charge of $35? This hospital has the only records for several of my tests. I'm feeling rather outraged, but I'm not sure if this is standard practice. breeZip@hotmail.com
Jon's September 22 reply to Christy M's September 22, 1999 - Hi Christy, You'd have to ask a lawyer if this is legal in your area. It might be considered a cost of doing business or then again, it might be argued that it is a deliberate obstacle to a person obtaining a copy of their own legally owned record. If you are on Medicare, they might have a thing or two to say about such a practice. I have requested and received a copy of my medical record from clinics, doctors' offices and hospitals, and have never been charged a penny, although once I had to get a notary-witnessed request, which cost a few bucks. I'm very interested to hear if anyone has had to pay such a steep fee for their records before. Jon.
Gatha E, September 22, 1999 - Hi to everyone and all the newbies in the last few months. I finally got to take my long awaited vacation trip from Texas back up to Seattle for 2 weeks over Labor Day. I was so worried about crossing all the mountains through New Mexico and Utah, but nary a problem. I just came through the trip wonderfully. I did feel better with the moisture around Seattle and had some asthma in the driest parts of the country but nothing than couldn't be handled by medication. No more worrying about mountains and I plan to try and do more traveling before I might get to the point where I can't someday! Thank you all for being at this great site. Jell855859@aol.com
Gerald F, September 22, 1999 - Hi, I lost my computer and home in a tornado on May 3 in Oklahoma City. We have a new computer and home. A new cardiologist has taken me off Lopid, Lanoxin, Cardura and halved my Lasix. My kidneys were giving me problems. He upped my Zestril to 40mg in steps and is adding a beta-blocker. My microsoft logon was glf25685646 and was gefan on the chats. I'm glad to find you again. Gerald Fansler. email@example.com
Jon's Note: Hey! Glad you're still in one piece!
Pat's September 22 reply to Christy M's September 22, 1999 - Hi, What I have been told is that you have every right to your records. Some hospitals do charge, some worse than others. One here charges $5 for up to 30 pages and the price goes up from there. Another one charges $17 just to pull the file, however, you can go to your doctor and have him request the records from the same hospital and they won't charge him a cent, and then you go get them from him. That's called backdoor cost of doing business. <g> Hugs to you all. firstname.lastname@example.org
Donna R M's September 22 reply to Christy M's September 22, 1999 - Hi, Yes, I've run into what Christy did in Albuquerque, only it was a base of $50 plus so much per page. Having been credentialed in the medical record field, I screamed loud and long. Bit by bit though, I went through the medical record department requesting the primary things that I needed for both my local doctor (they had never been forwarded to the doctors) plus made a copy for my records for Social Security. When dealing with the Disability issues, Social Security never requested any of my records. I've written here on that topic before suggesting that after filing for Disability, that you check back to make sure SS has indeed requested your records. I had an advocacy group involved since I also have pulmonary hypertension. With that being the case, all other providers sent to that group at no charge. My biggest aggravation is that my local cardiologist's clinic will not re-release a report they have received from another healthcare provider. It's all ludicrous. As for charges, I stopped working in that field 7 years ago and we charged 15 ¢ per page with no base charge, at a physician's office. Donna. email@example.com
Betty Brown, September 23, 1999 - Hi, I have just found out that I have CHF. I have a host of other problems: COPD, asthma, bronchitis, severe allergies, reflux and severe osteoporosis. I have been going to rehab in preparation for LVRS this winter. Is CHF going to keep me out of this surgery? Does everyone who has a one-time problem with CHF have a heart problem? Heather was kind enough to send me to this site before she left town. Please help me with these answers. Thanks, Betty. firstname.lastname@example.org
Will W, September 23, 1999 - Hi to everyone, I have heard and read posts every day and have received Jon's e-mails regularly. I will not be able to for about a month, I hope! We sold our home and are downsizing to a smaller place, as there is just my wife and myself now. Our boys have left the nest and we need to have a smaller place, less work! I will close down my computer on the 23rd and hope to be back up about October 25. I just wanted to say hello and good health to all. Take care of yourselves and I will be back shortly. Will W. email@example.com
Leeann D, September 23, 1999 - Hi everyone, It sounds like our friends who live in turbulent climates have all survived - praise the Lord! We actually had a friend in Taiwan and didn't hear from him till today. We're glad he's ok. I have a question about coughing. I seem to be doing a lot more of it lately. It doesn't really feel like a heavy chest cough. It's more in my throat most of the time. I used to have a cough from captopril, but I got rid of it and now I'm taking Zestril. Has anyone else had an ACE inhibitor cough that went away and came back? LeeAnn, age 39, EF 30. firstname.lastname@example.org
Claudia S' September 23 reply to Christy M's September 22, 1999 - Hi, I am responding about paying for our medical records. I requested mine from a local hospital, here near Chicago. I was charged the $35 flat fee and a dollar a page. It cost me over $150. What I did learn though, for future reference, is you do not need all the pages. I got consent forms I signed for surgeries. What I wanted were the lab reports and doctor's or nurse's written notes, and surgical reports. You can be specific as to what you want. I did think it was an outrage. Have I also mentioned here that I am still trying to get some records from a doctor that moved to California? She flat out refuses to send me the records. I wish I had known about asking my doctor to get the records for me, what a great idea. I hope everyone is having a good day! Claudia. CMSchm@aol.com
Cindy M, September 23, 1999 - Hi All, I just wanted to say a big thank you to everyone that responded to my request to have my picture scanned for my updated bio. Jon was right, there's plenty of generous folks here (as if I had any doubt :) Best, Cindy. email@example.com
Harriet, September 23, 1999 - Hi, After joining the ranks of Jon's Place and discovering that I should research and know about my conditions, I ordered the surgery reports of my open-heart surgery in January, 1998. I was told that I had to order the whole report, which turned out to be 230 pages! It cost me a little over $119 to get the report, and buddy, I got it all! I had ordered records of my neck surgery in 1996 with ensuing staph infection (which probably contributed greatly to my CHF) and it only cost $11. It was lengthy, too. I paid the fees because I felt it important to see it in writing but somehow, I keep brushing my forehead because I feel there is a sign that says "Sucker" up there. Thanks and love to all of you.
By the way Jon, I read with interest your reply to Vergen and all the responses from all the rest of you. It helped me more than you know to calm the beast of "family problems" I am having right now. We never know who we will help, do we? I have grown to love you all. firstname.lastname@example.org
Rick Stahl, September 23, 1999 - Hi, I'm 50, overweight and underactive. My father died of heart and artery desease. I do not have a cough and I don't think I have much shortness of breath. If I do get short of breath, it returns quickly. I recently returned from a week-long camping trip where rich foods and booze were generously ingested. I don't usually drink much. I walked much more than usual. Somewhere about halfway through the camping trip, my shoes became tight and hard to put on. I thought that my tennis shoes had gotten wet and shrunk. Upon returning home, I removed my shoes and socks and to my horror, my feet and ankles were as fat as balloons with toes sticking out. I thought this was from all the drinking and it would go away. Also, I gained a lot of weight on this trip, putting me over 300lbs at 6' tall. I put my feet up and cut way back on salty or sweet foods. The swelling went down some but not all that much.
It's been a full week now. Last night I went to a meeting and spent most of the time standing. Today my feet are all swollen again. I looked at your Web site and, other then the edema, I don't seem too bad off. I am a self employed artist with very modest income and I have never had health insurance, nor can I afford it. So a trip to the doctor is a real setback and a trip to the hospital will put me in ruin. I've always been overweight but healthy and anything I ever suffered from went away in time. I'm worried about this, though. After what we saw Dad go through, it scares me. Please advise. Thank you. Your Web site is very helpful. Rick Stahl. email@example.com
Jon, September 23, 1999 - Howdy-doo, Well, I know one thing fer sure: Next time I go pick up a copy of my medical record somewhere, I'm gonna smile and say sir and ma'am, since around these parts, copies don't cost a dime! I wonder if it's really legal to charge a patient for his copy but not to charge their doctor for an identical copy of the same record. Hmmm. Still, I know I've got it good now, so I'll just smile. ;-) Jon.
Jon, September 23, 1999 - Hey hey, Has anyone heard from Lee R lately? My e-mails to her aren't bouncing but are going unanswered and her web page and forum seem to be offline. Please let me know if you can contact her. I'm also still trying to contact June Jackson and most of the others on that list. Can anyone help? Thanks, Jon.
Debbie Herrman, September 24, 1999 - Hi all, Jon, I have written before but not lately. I was diagnosed with CHF in October of 1997 and also cardiomyopathy. I just recently asked what my ejection fraction was at my last visit on September 3. The doctor had an echo done on this visit because nothing had been done since 1997. My old EF was 13%. It is now 55-60%. My blood pressure is down to 117/62 and my pulse is 82. I feel really well and have more energy. Next time I go I will remember to ask if my heart is still enlarged or if I still have fluid around it. I am taking Coreg, Lanoxin, Bumex, Klor-Con, and Vasotec.
I am interested in talking to anyone who is taking, or starting to take, Coreg. Maybe I can encourage them about the tiredness that comes with this med.
Are there any Catholics or anyone who prays to saints? I pray to Mary and St. Jude the patron saint of lost casuses. I feel that this helps. I also have the prayers to use for them and would gladly send copies of them. I still need to lose 100lbs. I have already lost 60, and this is always a battle. Does anyone know if the protien diet is any good for the heart? Well I need to go. I have 4 puppies running around and they keep disconnecting me. Debbie H. Polybrid@Hotmail.com
Jon's Note: I can't think of a more delightful way to get disconnected than 4 puppies! <lol>
Crystal, September 24, 1999 - Hi, I have previously posted from Phoenix and now I have relocated to Albuquerque, New Mexico due to my heart. I have felt better, I have to admit, but now that I am here, I have been having nosebleeds. Can anyong help me with this little delimma? I am so thankful to be out of the heat, even though I am away from family. I feel better here but I have been having this nosebleed problem. Any help would be appreciated. Thank you, Crystal. Cp543@aol.com
Linda J, September 24, 1999 - Hi, I am going to Club Med today to dry out and I don't even drink! Gatha, I'm glad your trip was a success and you can go again. I have to get well for my new grandson's birth the middle of next month. Everyone have a good week. I miss all the oldies also. Jonesgen@aol.com
Bill L, September 24, 1999 - Hi, I've noticed a lot of questions on the forum about EF and why it changes. Maybe the following will help clarify: EF is the fraction of blood that leaves the heart when it contracts. It depends on the strength of the heart, how full it is when it contracts, how long it has to contract, and the resistance it has to pump against. An ACE inhibitor or alpha-blocker relaxes the arteries, decreasing the resistance. So when you go on an ACE inhibitor, there should be an increase in EF and because the decreased load means less stress on the heart, the heart may be able to recover to some extent (depending on what caused the low EF). Over weeks to months, the EF increases some more. Drugs that decrease the heart rate (like beta-blockers) give the heart more time to fill and empty which also increases the EF, but if the heart rate goes back up, EF may go back down. It would be nice if there was a test that just measures the strength of the heart, but none has proven satisfactory. I think EF is a good measure for diagnosing heart disease, but not as good for tracking changes because of all the dependencies. firstname.lastname@example.org
Bobby Farish, September 24, 1999 - Hello Everyone, My next appointment in Chapel Hill at UNC Hospital is September 30. It's my 6 month checkup. I don't feel as good as I did when I was diagnosed last year. The stress of my businesses, even with partners, is too much, so I'm selling my businesses and am going to apply for Disability. I have daily chest and back pain and a little congestion. I've paid in the max for almost 30 years and feel that I'm entitled to it. Bobby, EF 24%. email@example.com
Joe, September 24, 1999 - Hi, For many years I have insisted on getting a copy of all test results and diagnosis from the doctors and hospitals as soon as they are available. If a specialist or hospital is sending results to my primary physician, I instruct them to send a copy to me at the same time. I have never been charged for copies. As each occurance only involves a few pages, they are perhaps less inclined to charge for them. I would refuse to pay hundreds of dollars for medical records and I would report such charges to the local media who would probably make it a subject of a TV news investigation. The hospital or doctor would not want the negative publicity. firstname.lastname@example.org
Karen K's September 24 reply to Rick Stahl's September 23, 1999 - Hi Rick, I would say if you value any life whatsoever, you have no choice but to go see a doctor. The weight gain and swelling you describe are very typical of CHF. I've never been overweight so even when I first got sick I didn't realize anything was wrong until I noticed a slightly swollen ankle. I didn't have nor do I now have shortness of breath. I hear what you are saying about no medical insurance. Surely if you go to a county hospital or a teaching hospital, you can be seen and treated. As I see it, it is imperative that you go now Karen K. email@example.com
John Len's September 24 reply to Rick Stahl's September 23, 1999 - Hi Rick, You may not think you cannot afford health insurance but with your symptoms and weight plus your age, you cannot afford not to carry insurance unless you can get Medicaid. A short stay in the hospital or many office visits, especially to a cardilogist or any other specialist, plus diagnostic procedures, can easily bankrupt the average person. At your age, health doesn't normally improve; Been there, still am. I also can't afford health insurance but I cannot afford not to have it. John. firstname.lastname@example.org
Sharon J W, September 25, 1999 - Hi Jon, I am e-mailing on behalf of my Mom - Sharon J W - who is suddenly in the hospital. She wanted me to tell you that they are treating her for VT, without any proof of VT, just of her description of the episode that put her in the hospital two days ago. She is having a problem with this and also that the doctor mentioned the drug amiodarone. They will perform an EPS on her and want to put in a defibrillator even if results of the EPS are negative. She does have a-fib. Any assistance or guidance that I can relay to her will be greatly appreciated. Beth - for Sharon J W. email@example.com
Joe S' September 25 reply to Rick Stahl's September 23, 1999 - Hi, You live in the wrong state and wrong county. I live in Santa Barbara County in California and haven't had medical insurance or any type of insurance besides auto for years. Insurance is only to protect wealth and when you don't have any, it's easy. First of all, no one can take your home or car or any other necessity of life under any circumstances. Second, they can't deny you treatment as far as I know anywhere. Third, there's no more debtors prison. In my case the county, state and hospital paid 95% of all my bills. Of course, I have no visible assets. One major bummer is my wife has has some very serious female problems and since they don't consider her disabled, I am still looking at over $5,000 in bills. Since I had virtually no income after this CHF started for 6 months, many of them went to collections. Big deal, I now have bad credit. Some, though, wrote off many of the charges. I personally think putting my credit rating above spending a fortune on health insurance a poor choice. You know there are many ways to get around bad credit. You may not be able to get credit cards at a low rate, but you can still buy almost anything you want. Most still take cash. I think a lot of this is a matter of priorities. For myself, I believe you cannot serve God and mammon ( Matthew 6:24). Joe S. JES@StevensonLighting.com
Jon's September 25 reply to Joe S' September 25, 1999 - Hi Joe, I know that if we don't pay out of our own pocket, it is very easy to forget, but "free" service that is paid for by the "county" or "state" is actually paid for by taxpayers who work for their money too. Charges that get "written off" are also passed on to other consumers in many ways to make up for the bills people do not pay. It might be considered personal responsibility rather than greed to have health insurance if at all possible; another point of view to consider. Jon.
Krnlueez, September 25, 1999 - Hi, In February, 1997, at the age of 41, I was diagnosed with an enlarged weakened heart and arrhythmia with PVCs and runs of V-tach. At that time my EF was 43%. My heart beat anywhere from 158 to 53 bpm. My BP was 110/70. I was put on beta-blockers. For over a year I tried several different ones but my blood pressure went too low. Last March, my EF was 35% and I had a defibrillator implanted and started taking Vasotec. Vasotec has increased my EF to 45%. I am so grateful I found Jon's Place. I have learned so much in the last few days of reading. I've laughed and cried and thanked God for all of you! firstname.lastname@example.org
Lee R, September 25, 1999 - Hi Jon and all, I'm still alive and well. The old ICD pulled me out of a couple of good ones in August. Thank goodness for modern technology (even though it is a bit barbaric). I am planning to update my bio but things like that always take me a little time. Every once in awhile my site goes off the wall at Geo-Yahoo but then an hour or so later all is well. You take care, you all are always in my thoughts and prayers!
To Jon, Thanks for the bulletin on low magnesium. Mine was only on the low side of normal, but enough to send me to the ER, so watch that blood work! Love, Lee. LeeRoush@aol.com
Lori P, September 25, 1999 - Hi everyone, I'm sorry if this is a completely stupid question, but is there any connection between CHF and speech? Like mixing up words in sentences, etc. Thanks. email@example.com
Jon's September 25 reply to Lori P's September 25, 1999 - Hi Lori, I don't know about CHF, but my wife has a different heart problem and she developed some problems with speech. Sometimes words come out of her mouth in the wrong order, or an unintended word slips in. She isn't sure but thinks it might be her medication, which is Norpace. Jon.
Rick M, September 25, 1999 - Hi, Maybe I'm just lucky but my cardio doc is a member of a medical group which is completely computerized. Early in our relationship my doctor urged me to take a printout of my medical records with me when I travel. They supply the whole thing, neatly packaged and I put it in a folder in my luggage. On my last trip north, I had occasion to visit the ER. They were amazed when I handed them the folder and I got the best of attention. The doctor wanted to know, "Where did you get that stuff?" Does anyone else get this service? firstname.lastname@example.org
Bobby Farish, September 25, 1999 - A poem:
Sometimes we come to life's crossroads and
View what we think is the end,
But God has a much wider vision and
He knows it's only a bend.
The road will go on and get smoother, and
After we've stopped for a rest,
The path that lies hidden beyond us is
Often the part that is best.
So rest and relax and grow stronger
Let go and let God share your load,
And have faith in a brighter tomorrow
You've just come to a bend in the road.
Phyllis A's September 25 reply to Debbie H's September 24, 1999 - Hello All, Debbie, I do believe in saints. I was born and raised Catholic. I went to 12 years of Catholic school. St. Jude is my patron saint. He is patron of impossible cases and he has interceded to our Lord and Saviour on my behalf many, many times. By the grace of God, and with St. Jude also praying for me, I have made it through breast cancer, with a breast removed and chemo and radiation. I am now making it through CHF, HCM, severe asthma, acid reflux and allergies.
How did you lose 100lbs? I started gaining weight before I knew I had CHF. Since 1997 when I was diagnosed, I have gained about 50lbs. Let me know how you did it, please. I hardly eat and I still gain. I guess it is the fluid. God bless us all. email@example.com
Maureen, September 26, 1999 - Hello, Just last week I got terrible news. I had been sent to a neurologist after receiving an abnormal EMG because I was experiencing constant numbness in my extremities that would never go away. I was losing both strength and coordination. All my symptoms together spelled only one thing - Beckers Muscular Dystrophy. In fact, it is the Muscular Dystrophy that caused my cardiomyopathy. Some of my family members who have died also had it. It is just that they did not live long enough to be symptomatic. My brothers died at 12 and 21 years, and I found out that my 21 year old brother was suspect, but he died of the cardiomyopathy before they could do a muscle biopsy, which I will have to have to confirm the diagnosis. There are over 40 kinds of Muscular Dystrophy but only 2 of them have cardiomyopathy as one of the symptoms. It explains a lot, since I have led nothing
but a squeaky clean life. The worst part of this news is that there is a 50/50 chance that I passed it on to my 2 children. I am having a hard time adjusting to all this.
I am a teacher of first and second graders, and I just recently went back to work to supplement my meager but much appreciated SSD funds. When I was first diagnosed 8 years ago, I had to quit my job. One year later, my husband's company just shut the doors with no notice and no severence - not 2 dimes to rub together. After working odd jobs for about 2 years, he got on again with Yellow Freight and picked the insurance and pension back up. We survived but really collected a lot of debt. I went back to work to help us knock some of that debt off. If I have to quit again, we will be in financial ruin. I don't think that it is right to go for bankruptcy and the thought bothers me greatly. I just hope I can hang on, because my legs are so weak, I don't know if they will continue to hold me up, and the fatigue from both maladies together is almost unbearable.
Anyway, thank you for being there when I really need to unload all this from my chest. If anyone else out there has this dual diagnosis,please e-mail me at firstname.lastname@example.org. Love and peace in Jesus, Maureen.
Ben B's September 27 reply to Sharon J W's (Beth's) September 25, 1999 - Hi, Your post strikes a chord with me because the whole EP study and defibrillator issue has me baffled. When I had my last cath, the doc saw something strange - maybe some V-tach - and started freaking out. He set me up for an EP study the next day. The EP doc, supposedly a leader in the field, came in and asked me if I'd ever fainted. I told him I never did and never felt any arrhythmia. After the EP study he said, "We mapped the PVCs to the upper septum and they are harmless." I needed no ICD. Now I keep reading that EP studies can't tell anything. Why the heck do they do them? Cynically I'm thinking they may do an "insurance study" to see what your insurance will pay for to decide whether to implant anything. It is sort of scary, but you can't implant your own ICD or force your doctor to do it. Plus, who wants to have one if you don't need it. Sorry I can't be more informative, but I sympathize with your mom. email@example.com
Pat L's September 27 reply to Lori P's September 25, 1999 - Hi everyone, Lori, I have learned that there are no stupid questions when it comes to this serious business of CHF. I have the same problems with mixing up words or even forgetting mid-sentence what I started to say! I know that since I have had CHF, I have experienced a lack of oxygen to my extremities, mainly my legs, due to poor pumping of my heart. I think maybe there could be less flow of oxygen to the brain. Some of the medications I take say disorientation is a side effect, too. Pat. firstname.lastname@example.org
John Len's September 27 reply to Rick M's September 25, 1999 - Hi Rick, Miracles do happen and I bet he didn't even charge you so much a copy. John. email@example.com
Al H's September 27 reply to Rick M's September 25, 1999 - Hello Bionic Rick, Very few get the same service your doctor offers, in my humble opinion. My Mother goes to a wonderful group of doctors located between 2 rural (note - rural, not suburban) communities in South Carolina. When she came to visit me last year, they mailed to her the type of report you mentioned. Isn't it amazing what computers can do for almost any patient as long as the medical group sees the need (on the other side of greed)? Al H. firstname.lastname@example.org
Brenda, September 27, 1999 - Hi, I'm 37, and for 2 years, I have been puffing up like a balloon. Last year my feet and ankles swelled so bad you couldn't even see my toes. My doctor put me on diuretics, which kept the fluid down but I went back with fluid still retaining. He put me on medication for high blood pressure, high cholesterol and diuretics. I am going back tomorrow for a renewal of prescriptions. My feet look like little balloons all over again. I'm scared because heart problems run in my family. email@example.com
Michael C's September 28 reply to Cecil C's September 20, 1999 - Hi Cecil, The chances of a long term successful cardioversion depend on a number of factors: size of the heart, ejection fraction, and luck. There are some alternative methods in the trial stage. One of these is ablation. That is where the part of the heart muscle causing the a-fib is killed. The trial is being conducted in Boston. Also, there is a trial being started with a new type of pacemaker. A cardiolgist in my home town is being considered for the trial. I'll post details later. firstname.lastname@example.org
Jon's Note: See this page. It's from last year but very relevant
Eva Moubray, September 28, 1999 - Hello, I have been reading your posts for almost a year now and find most of them to resemble some of my complaints of DCM and CHF. I have had both for almost 3 years now. At first, this is very hard to deal with, but as time goes along I have been able to adjust. I still worry about the weight gain that goes along with this. I wish someone could give me a concise opinion on why this goes with this heart problem. I love the site. Cisssy99@aol.com
Jon's September 28 reply to Eva Moubray's September 28, 1999 - Hi Eva. I don't think weight gain is a sure-fire consequence of CHF. Most of it is probably due to us getting a lot less daily activity and exercise as a result of being so doggone tired all the time. Also, when you are at home most of the time and too tired to do much physically, the easiest way to pass time and fight boredom is to eat! I think it really is that simple. Mind you, some of our meds do give us a tendency toward gaining weight, especially beta-blockers, but I know the real culprit in my case has been not enough exercise and too much eating.
Sorry posts have been so slow and mailings so few. My doc has decided I have RLS and I agree it's a strong possibility, so we are trying a Parkinson's disease drug to see if regulating dopamine helps. As a result, I have the creepy-crawly-heebie-jeebie-jerkies right now and am having some trouble concentrating. Hopefully, I will adjust and start sleeping better but that remains to be seen. I'm still breathing though, and am certainly still ornery! <g> Jon.
Jim M, September 28, 1999 - Hi, I have not been told that I have CHF, but I did have a heart attack in 1993 and a triple bypass performed at that time. I just had a quadruple bybass to correct blockages in 2 of the orginal and add some more. I was told in 1993 that my EF was 40%, but a recent echo showed I was down to 33%. After the most recent surgery 4 weeks ago, the doctor told me I was back up to 57%. I was looking for a support group for bypass patients, but yours (which is great) is what I found. I am feeling great, have no chest pain and am presently walking 2 miles per day in 33-35 minutes. Thanks, and I hope to hear from some of you. Cheers, Jim. Jmasingill@dimen-intl.com
Joe S' September 28 reply to Maureen's September 27, 1999 - Hi Maureen, My heart and prayers will continually go out to you. If there is anything any of us can do please just say so. I'm going to make one last comment on medical costs and how to pay them. There is nothing wrong with declaring bankruptcy. JES@StevensonLighting.com
Susie T, September 28, 1999 - Hi, I would like to know which is worse for you - high or low BP? Also, I have been having a problem with my heart rate. It can be 150-200 through the day and yet a lot of mornings it is down in the 30s and 40s. When I last saw my doctor, I told him at times it takes off like crazy, and he felt we may have to up the Coreg again. Well, a couple of days later, I told him my heart rate was 35 that morning. He said, well just 2 days ago you said it wanted to run away at times so I let it be. Yet I know if my BP is low that I feel so bad and I feel better if it stays just a little high. I don't think it has been normal in a year or so, like my heart rate. If it stays around 100, I do alright but when it really goes up or really goes down, I feel really weird at times. Well enough complaining, I'd better go. May God bless you all. email@example.com
Jon's September 28 reply to Susie T's September 28, 1999 - Hi Susie, You sound like a perfect candidate for a Holter monitor. They show you how to apply little sticky electrodes to your ribs and chest, hooked up to a little machine that you wear on a shoulder strap. Then, when you feel a spooky heart rate episode, you push a button on the machine and it automatically records 5 minutes of your heart rate. Then you can dial a phone number, and put the machine next to the phone and push another button, and it will relay that info to your doctor right through the phone. You wear this thingie every day for a month and that way, you have time to catch a bunch of these episodes and pass them on to your doc, so he can have some really good info to base any further treatments on. Ask him about it! You really cannot afford to ignore irregular or very fast or very slow heart rate episodes. Jon.
Donna, September 28, 1999 - Hello to all, My name is Donna. I was 50 years old at the time I was diagnosed with CHF in July of this year. I have been reading everything from all the posters. I have to say I am very lucky, I have a wonderful cardiologist and also a great doctor who is a transplant specialist. They have me on all the meds Jon has talked about. My question is: is it Coreg that makes me so tired? Right now, they are giving me 12.5mg Coreg 3 times a day, then they will up it to 25mg twice a day. I also take Zestril, Lasix, digoxin, K-dur and some other drugs. I had my first cardiac cath and no arteries were blocked. Thank you Jon, for this forum, as it is nice to hear from people who are in the same boat. firstname.lastname@example.org
Lee R's September 28 reply to Ben B's September 27, 1999 - Hi Ben, I'm concerned with your reply to Beth about her mom, Sharon. Where have you read that EP studies can't tell anything? Actually, they do an excellent job of determining whether or not VT can be brought on via a catheter stimulating the heart. I had never passed out either, but had felt like I might. When I had an EPS done, there was indeed evidence that my heart goes into polymorphic VT - a condition that leads to VF and SCD (sudden cardiac death). My ICD has saved my life 3 times in the past 1½ years. I'm mighty grateful because the quality of my life is pretty good. There is also a lot of evidence that ICDs outperform anti-arrhythmia drugs. Jon has some info at his site and there is also material and links to ICD info at my site at http://www.geocities.com/heartland/lake/4030. EP studies are invasive, but when a serious arrhythmia is suspected, they should probably be done. One other thing to keep in mind is that ICDs can only be implanted under a strict protocol. See Guidant on the Web. Lee Roush. LeeRoush@aol.com
Jon's September 28 reply to Lee R's September 28, 1999 - Howdy-doo, I guess the thing to remember is that all tests have limitations in some respect. The EPS does not accurately forecast all types of arrhythmia in all patients. EPS does effectively forecast many types of arrhythmia, just not all types. It is quite good at predicting which patients will benefit from RFA (radiofrequency ablation), as far as I know.
I am also interested in knowing which articles say that EPS is useless, since I need to keep up on current medical opinions myself. I know of only one such statement, which I recently mailed out in an article about SCD. I quote from that article:
"Based on data from studies done during the last 15 years, it was suggested that inducing ventricular tachycardia via EPS (electrophysiology study/testing) does not correspond to real-life risk of SCD. Also, NOT being able to induce an arrhythmia via EPS does not mean a lower risk of SCD. Patients with non-ischemic cardiomyopathy are a difficult subset, because EPS has very low predictive value in them."
You can see that this statement - which occurred during a panel discussion about SCD among doctors from various countries - seems to imply that EPS is not a definitive test for SCD, and indeed it is not. No test is. SCD remains a very elusive animal, as the huge number of trials in progress proves. The statement is careful to use the word "suggests" suggesting <g> that these docs are not entirely certain. It refers only to ventricular tachycardia and its relationship to Sudden Cardiac Death - not to VT alone (without SCD) and not to other types of arrhythmia. It also mentions that some subsets of patients are tough nuts to crack - namely us CHFers. <g>.
ICDs are now being questioned but really only in 2 areas. Number one is whether they improve mortality much when a person's EF is higher than 35%. It is now certain that they help a lot in people with an EF less than 35%. Area number 2 being questioned is whether CHFers are trading SCD for pump failure. By that, I mean it is being suggested that CHFers getting ICDs are often surviving SCD just to die not much later from pump failure - which means unstoppable heart failure causing death. The cost of ICD implant - if it is only postponing the inevitable for a brief time - is being questioned in this age of financially constrained health care. Whether that is right or wrong, I leave to each person to decide - I just wanted to maybe help define the issues. I hope I did, and didn't just muddy the waters! Jon.
Eris, September 28, 1999 - Hi, When I was first diagnosed with CHF, my doctor tried me on various ACE inhibitors and they made me cough so violently, I would throw up. Eventually we settled on Losartan, which did not make me cough. Later I was given Coreg, with not too much bad effect. However, since my Coreg was upped to 25mg in the AM and 50mg in the PM, the cough has returned. I was put on 25mg spironalactone at the same time as the extra Coreg. Could either of these cause the return of the cough? The cough brings up a lot of thick mucus. email@example.com
Tandy K, September 28, 1999 - Jon's note - I will be posting Tandy's messages on this side even though she is a caregiver. Her son Brandt, with CHF, is only 20 months old so he can't very well speak for himself yet. <g>
Hello All, Brandt has been sick with a virus. He ran a high fever for 3 days. When he would wake up from a nap, his head would be burning hot but his legs and arms would be ice cold and blue. This would resolve in 20-30 minutes. I took him to the pediatrician today and he got an antibiotic for his red throat but she had no answer to the above dilemma. I have a call to the PC in but was wondering if anyone else has experienced this. Thanks. Tandy K. firstname.lastname@example.org
Linda S' September 28 reply to Brenda's September 27, 1999 - Hi Brenda, I know how you feel. I was told after my triple bypass that I had CHF with 3 to 5 years to live. It is very scary. email@example.com
Danny S, September 28, 1999 - Hello everyone, I am having a breathing test done November 1 to check my breathing volume. Has anyone ever had this done? If so, what should I expect? Breathing seems to be my biggest problem; just walking gets me winded. Breathlessness bothers me more than anything. I am setting here now in A-fib and it takes my breath to a point. Ok, thanks everyone. God bless. DLS50@webtv.net
Lydia Moore's September 28 reply to Brenda's September 27, 1999 - Hi Brenda, My name is Lydia and I can certainly understand how you feel. I am not clear on something. Do you have a cardiologist and were you actually diagnosed with heart problems? Have you had all the proper testing, like cath, echo, etc? There was much heart disease throughout my father's side of the family and I was not even aware of it till after I was diagnosed. Yes, it is very scary and very shocking when you first find out. However, knowledge is so important and Jon's site has so much to offer. It has been a lifesaver for me. There have been 3 things that have helped me the most. Information, good doctors and God. He is the Master Physician and after I know I have done all the footwork I can, I leave it all in His hands and somehow all my fears turn into peace. I will keep you in my prayers and please inform us on your condition. There is so much love and support here, so you are on the right track. God bless, Lydia Moore. firstname.lastname@example.org
Brenda, September 28, 1999 - Hi, I went to the doctor's yesterday. He said my heart's beating is clear with no gooshy watery sounds or any abnormalities. I have high blood pressure at 149/80, I believe it was. I have been on Lotensin/HCT for a year. I also have high cholesterol - over 200 - and I was on medication but it wasn't renewed yesterday, nor was I tested. I continue on the low cholesterol, low fat diet he put me on back then. I have, as he says, "poor circulation" which caused the swelling of my ankles and feet. He has me on Demadex for that. I have toes and ankles now. Sunday you couldn't even see my toes. I'd like to stay on this board if it's okay. It's the closest place I've found to finding a little comfort and friends. I have heart disease in my family and I'm as close to having it as I can get.
I'm a 37 year old woman. When I went to the doctor yesterday, I was 210lbs. I was puffy but not like I was on Sunday, although I still didn't have any ankles to be seen. Four times while waiting to see the doctor, I was asked when my baby's due and I'm not even pregnant. It gets kind of old after a while. People sort of clam up after I tell 'em I'm not pregnant. My Dad had a heart attack back in July and My uncle (his twin) had a heart attack 10 years ago, and has had a triple bypass. So with my problems and their past experiences, I am a little on the scared side. email@example.com
Jon's September 28 reply to Brenda's September 28, 1999 - Hiya Brenda, You can stay as long as you want. :-) I gotta say that I would push my doc for a more specific diagnosis real quick. Poor circulation has to be caused by something and that something might be a damaged heart or some blocked arteries, which need treatment. If he is not aggressively trying to find out why you have "poor circulation" you really should get another opinion. You don't have to tell him you're doing so if you don't want to. For what it's worth, I think we were all scared when first diagnosed with weak hearts and related problems. The more you learn about dealing with your particular condition, the less fear will cling to you. Jon.
Bill L, September 28, 1999 - Hi, After my last post, someone asked why EF doesn't correspond very well to the number of symptoms or quality of life. I don't think anyone knows the whole answer, but there are a couple of factors that are pretty clear. First, most heart failure is the result of a decrease in strength of the heart to contract (loss of muscle from a heart attack or toxicity from alcohol, for example) and stiffness making it hard to fill the heart (muscle thickening from hypertension or scar tissue). Decrease in contracting ability (weak squeeze) causes the heart to dilate and the EF to go down. Stiffness doesn't change the EF much. Both cause the pressure in the lungs to go up, which causes shortness of breath. So, depending on whether your heart has more trouble filling or emptying, you can have higher or lower EF with the same increased pressure in the lungs. The second factor is that your lungs and heart can compensate given time. If your heart failure was caused by something that happened gradually, you can probably handle the higher pressures with fewer symptoms. If it happened suddenly (like a heart attack), the shortness of breath will be triggered easily. This is only a partial answer, but maybe it will help show why comparing EFs doesn't work very well. firstname.lastname@example.org
Jill S, September 29, 1999 - Hi, I am now taking 6.25mg Coreg twice a day. It has taken me a year to get there due to my low blood pressure. Since the last increase, I find that I am hungry all of the time. Has anyone else had this problem? It's wicked because I have also gained 15 pounds since I have been on the drug. email@example.com
Rick M, September 29, 1999 - Hi, I would like to share some of my experiences with weight and fluid retention. I am 6 feet 2 inches tall and when I first found that I had CHF, I weighed 230 pounds. I also had puffy feet. You'll find my meds on my bio and see that I have been on the more or less standard regimen for successful treatment. I am a very zealous patient, who wants to do everything my treatment plan calls for and then some, so when I discovered that diuretics can't do everything, I went on a very strict low sodium diet. Some of you may recall that I even preached, on occasion. The strict program of weighing myself first thing every morning and recording the results, helped me see the consequences of my lifestyle. I've been accused of living in a perpetual state of Lent because of all the things I've given up. I found that as my body dried out, I had a lower demand for fluids and consequently, found my weight down to 201 pounds and my blood pressure getting down to 80 over 40 on occasion.
My doctor, who follows my charts carefully, eliminated my second Lasix pill and my potassium so that my weight has gone up to 205 and my blood pressure to 117 over 60, where it belongs. I now take only one Lasix every other day. I feel great at this stage. I had recently been diagnosed as being diabetic and my cardiologist sent me to a diabetes doctor. My last visit showed that by following directions and watching my diet, that is now back to the normal range - all in one month. So, children, listen to this old 74 year old veteran and watch what you put in your mouth, because if I can do it, you can do it. firstname.lastname@example.org
Jo, September 29, 1999 - Hi, This is my first ever chat! In fact, I don't know if I am chatting or posting a newsroom, or what. I am new to the web. A big reason I've spent the money to get on the web is to find chat rooms and information on my heart conditions. I've lost both parents to heart problems in the last 5 years and I know the road I am on. Yuk. On a happier note, the other big reason I got on the web is so I can send and receive e-mails from my niece and nephew and family. My niece is 4 and is starting to learn to type words. Yes, she is brilliant. <g>
I've had a-fib, arrhythmia and CHF for 5 years now. Yes, I am sick of it and scared of it. I've been on a downward slope of energy and that bugs me a lot. I just can't seem to do much of anything anymore. Anyway, you all know that, I'm sure. I have a question. Has anyone heard of vitamin B therapy for heart problems? My brother-in-law is into alternative medicine and he thinks it might help. I hate taking drugs. I was so glad to find your chat room. I've spent hours searching and finally found you! Yeah. Talk to ya later. email@example.com
Jon's September 29 reply to Jo's September 29, 1999 - Hiya Jo, Welcome to Jon's Place! For all of you who aren't quite sure what precise terms to use, here's some help. A chat room is a live interaction between people, usually through a Java applet. It can also be done through certain scripts. It's not a place but rather a piece of software or programming that lets you talk to each other in "real-time." You don't "post" to a chat room - you chat.
A message board is what you are reading right now. It is a place where you can read messages left by other people, and leave a reply or a new message of your own. This is called "posting." It's more of a "place" instead of a program like a chat room. The real major difference is that a message board is not "live" so you cannot get or give an immediate reply. Of course, this might be considered an advantage since it gives you time to think about what you want to say. None the less, certain people - namely me - still manage to stick their foot firmly in their mouth anyway! <lol>
A list is kind of a message board done by e-mail. You get "posts" by e-mail and send your answers by e-mail. They are received and sent out through a software program or script or maybe even are done by hand by the "owner" of the list. This has the disadvantage of making it harder to follow "threads," which are posts that need to be read in proper order to follow the conversation.
A mailing list is where you sign up to receive information that will be sent to you in e-mails. I hope this helps a bit. Jon.
Ben B's September 29 reply to Lee R's September 28, 1999 - Hi, I feel more reassured after you guys talked about the EP study. I guess I can sort of trust mine. I really have to. I was sort of worried after Jon mailed that study that the EP study I went through did not really predict my chances for SCD. Also, it seems that a few people here are being told by their doctors that even though they could not induce VT in the EP study, they still needed the implant. I guess I was just wondering if my doctor was right. I have to trust him anyway. firstname.lastname@example.org
Henry T, September 30, 1999 - Hi, Recently my doc raised the possibility of adding Aldactone to my regular CHF meds. While I probably qualify on the basis of EF, I'm currently NYHA class II, which is lower than those participating in the trials. I am interested in hearing from anyone who has added Aldactone to their pharmacological brew. I'm especially interested in hearing from anyone who has experienced adverse side effects. Thanks, Henry T, age 53, DCM, ICD. HRTick@aol.com
Jon's September 30 reply to Henry T's September 30, 1999 - Hi Henry, I took Aldactone for close to a year at the low 25mg daily dose. I only had one side effect but I stopped taking the med because of it - sore nipples. I ignored them until they got so sore that wearing a tee-shirt hurt, and that was that. I was just one of the unlucky few. I believe that only 7% of all people in the RALES trial ever had this side effect (men were affected at least as often as women). Other than that, I had no problems at all with the drug. On another topic, I have already dropped Sinemet for RLS. It tore me up. Maybe taking the lower CR dose of 100/25 will help. I'll be talking to my doc about it tomorrow. Jon.
Shirley G, September 30, 1999 - Hi Jon, I hope you all believe that there are no stupid questions, because I have one: I keep reading on the message board about EP studies and people visiting their EP. Can you tell me what EP stands for? Shirley G, AML, DCM, CHF. email@example.com
Jon's September 30 reply to Shirley G's September 30, 1999 - Hi Shirley, EPS or EP study is an ElectroPhysiology Study. That's a procedure where a cath is done just like a diagnostic heart cath but while there, they stimulate tiny locations inside your heart with electricity through the catheter. If doing so causes an irregular heart rhythm, they record it and decide how to treat it. It's a way to "induce" arrhythmia to predict who's likely to have a really dangerous rhythm disturbance before it happens in "real life." I am guessing that if a person went to see their EP, it would stand for ElectroPhysiologist, which is a cardiologist who specializes in the heart's electrical systems. Jon.
Lydia Moore's September 30 reply to Jill S' September 29, 1999 - Hi Jill, I have been on Coreg for about 5 months and yes, I was always hungry, especially the first few months after I started taking it. Yes, I definitely gained some weight. I could not sleep well either so I was always in the kitchen to see what I could eat. I don't know whether it was the Coreg or my way of dealing with CHF psychologically but I can tell you that I was truly hungry. The good news is that the big appetite has ceased. I think the body does some strange things adjusting to our medications, so hang in there. Time will tell. God bless to everyone. Lydia. firstname.lastname@example.org
Sherrell G's September 30 reply to Ben B's September 29, 1999 - Hi Ben, During my EP study almost 5 years ago, the doctors could not duplicate the arrhythmia that caused my sudden cardiac death episode. Therefore medications or surgery would not help. My family and I chose to follow the doctor's recommendation for an ICD. It has been my safety net. It has only fired (administered therapy) once but I am glad I have it if a problem develops. It has picked up bad rhythms many times but my body corrected before the unit worked. If the doctors recommend an EP study, I for one say listen. email@example.com
Judith's September 30 reply to Lori P's September 25, 1999 - Hi Lori, Like you, I also used words out of context or words that sounded similar but not relevent to the subject when I was under stress or over tired. I was a residential property appraiser for years and after being diagnosed with severe CHF, I tried to continue working, but to perform my job well and not make any legal errors became too stressful. I embarrassed myself many times during client conversations. Then one day it hit me "this wasn't really me." Something had triggered this change.
Since I have retired, my speech difficulties only plague me occasionally, then I know enough to rest more. I'm so happy to have found Jon's Place and read other experiences that are similar to mine. I now laugh about some events that weren't so funny at the time they happened, but humour is great medicine too. I've been living with CHF for 6 years now and am still quietly careful about my health. Good luck to you. Gail in Canada. Judithgail@auracom.com
Virginia R's September 30 reply to Jill S' September 29, 1999 - Hi Jill, I had the same problem with weight gain after starting Coreg. My cardiologist confirms that the medicine caused it. I weighted 120 for three years and am now at 135lbs. Since I am only 5' 2" this is a lot for me. I felt better at 120lbs. I walk 30 minutes on my treadmill at almost 3mph, 7 days a week, and this has not helped. I went on this protein diet and lost 6 pounds in 6 days but almost passed out, so I went back to my low fat diet and have stayed there since. My weight has not gone up in 4 months and seems to be stabilized now, but I am unable to shed any of the gained weight. My cardiologist doesn't seem concerned about it. I hope this helps, although it isn't in the right direction. Virginia R. firstname.lastname@example.org
Linda, September 30, 1999 - Hi friends, I could use a prayer or two now. When I was in Club Med last week, they found that I have lost more blood. I will go to the oncologist next week to be checked for leukemia and Hodgkin's. I also wanted to share the following prayer with you. How often we don't slow down enough to be thankful and see our many undeserved blessings. Love to all.
Kinda neat, huh? Jonesgen@aol.com
Phyllis A, September 30, 1999 - Dear Jon and Friends, I need you all to pray for my Dad, who is a dialysis patient. He has been in the hospital for a week today, and now has been scheduled for surgery tomorrow for a bowel resection. Please pray that they only have to take a small part of bowel to remove the obstruction and that he doesn't need a colostomy. He has been through enough. I know God will be with him but I would like to have extra prayers going up for him. Thanks to all and may God bless us all. email@example.com
Harriet's September 30 reply to Jon's September 29, 1999 - Hi Jon, I really feel like a "Me Too! person." I also have RLS and have been taking Sinemet (which is very expensive) or the generic Carbidopa/Levedopa for quite a while now. It really does help but you have to take it at bedtime. It makes you nauseated. I also start slurring my words and my tongue seems to get thick. Dizziness is there, too. I'm sure your doctor told you to take it at bedtime. I have taken it during the day also, because it does cause the RLS to act up earlier. I take so much medicine that my symptoms may just be more pronounced. Who knows? Good luck with your treatment, Jon. RLS is miserable.
Jo, I am relatively new to the Web myself and am glad to know that with this site, I am not alone in my many ailments. Maybe we can learn together. I just hop in here anytime my fingers need to talk. firstname.lastname@example.org
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.