The paperwork never ends The Archives
Loved Ones - April, 1999 Archive Index CHFpatients.com

Charlotte 4-1     update on my husband
 
Bill D's 4-1 reply to Charlotte's 3-31     Coumadin & amiodarone
 
Bill D's 4-1 reply to Dan B's 3-31     children with CHF, info & more
 
Charlotte 4-2     update, emotional issues, questions
 
Susan Rose 4-2     update, docs, social workers & more
 
Bill D's 4-3 reply to Susan Rose's 4-2     second opinions, pharmacy consults & more
 
Bill D's 4-3 reply to Charlotte's 4-2     approaching the subject of a will & such
 
Claire F's 4-3 reply to Dan B's 3-31     ill children, options & more
 
Gus R's 4-3 reply to Charlotte's 4-2     power of attorney, living wills & more
 
Stefanie 4-5     update on mom & more
 
Tom 4-5     my dad died, advice & more
 
Alice 4-6     anyone have an LVAD? & more
 
Dina Rice 4-6     update on John & more
 
Robin 4-6     intro, I am losing my dad & more
 
Bill D's 4-7 reply to Robin's 4-6     meds, planning for all possibilities
 
Paul B's 4-7 reply to Robin's 4-6     coping
 
Kristine Conner 4-9     seek advice for AHA CHF site
 
Robin 4-9     Bill, Ben, CoQ10 dose question
 
Susan Rose's 4-9 reply to Robin's 4-9     in the same situation
 
Bill D's 4-10 reply to Robin's 4-9     CoQ10, Susan R & living wills
 
Charles D Sr 4-10     nice pages, is there a chat room?
 
Dan Bolinger 4-10     thank you & choosing pediatric doc questions
 
Jon's 4-10 reply to Dan Bolinger's 4-10     choosing a pediatric doc study
 
Heather A 4-10     how to approach my mom's situation - questions
 
Jon's 4-10 reply to Heather A's 4-10     how to go about it
 
Pam 4-10     seek a friend in the same boat
 
Paul B's 4-10 reply to Robin's 4-9     weight and med changes, & Susan Rose
 
Vicci 4-10     questions about drug trials
 
Jon's 4-10 reply to Vicci 4-10     drug trial question
 
Lynn 4-11     take good care, CHF killed my grandfather
 
Charlotte 4-12     pro-time test question
 
Robin 4-12     amiodarone and appetite & meds questions
 
Jon's 4-12 reply to Robin's 4-12     amiodarone and appetite & meds info
 
Robin 4-12     update, dad's meds, questions
 
Suzanne 4-12     Coreg & stomach problems questions
 
Annie G's 4-13 reply to Charlotte's 4-12     getting test results from doctor
 
Gus R's 4-13 reply to Charlotte's 4-12     getting test results from doctor
 
John M 4-13     caregivers: advice and appreciation
 
Maria 4-13     coping with dad's illness & more
 
Jon2 4-14     anyone else have anemia complication?
 
Karen Phillips 4-14     finger cramps - any ideas?
 
Jon's 4-14 reply to Karen Phillips' 4-14     potassium levels, dehydration possibilities
 
Carolyn B 4-14     Coumadin & Coumadin testing
 
Linda A's 4-14 reply to Charlotte's 4-12     Coumadin testing
 
David G 4-14     ICD info, update
 
Dina Rice 4-14     questions - CHF, cardiomyopathy, transplant & more
 
Carolyn B 4-16     update on my daughter
 
Charles D 4-16     request advice on telling family & more
 
Charlotte D 4-16     update, Coumadin problems, questions
 
Chrissy S 4-16     update on mom, prayer request & more
 
Gus R's 4-16 reply to Dina Rice's 4-14     prognosis, transplant, living well & more
 
Virginia R 4-16     update, finding a new clinic & doctor
 
Carolyn B's 4-17 reply to Charlotte's April 16      Coumadin testings & docs
 
Bill D's 4-17 reply to Charlie D's 4-16     about that letter
 
Jon's 4-17 reply to Dina Rice's 4-14     CHF & cardiomyopathy, compensation & cure
 
Chrissy 4-18     Atavan med questions
 
Dina Rice 4-18     update, frustration, stating questions & more
 
Jon's 4-18 reply to Dina Rice's 4-18     question, venting & more
 
Jack's 4-18 reply to Charlotte's 4-16     CoQ10 and bleeding gums
 
Ben B's 4-20 reply to Dina Rice's 4-18     coping with CHF, definitions & more
 
Virginia R 4-20     update on Dad, cath question & more
 
Jan 4-20     vomiting, loss of appetite questions about dad
 
Jon's 4-20 reply to Jan's 4-20     possibilities
 
Ben B 4-21     correction to book title
 
Bill D's 4-21 reply to Jan's 4-20     looking up meds help
 
Mary 4-21     meds, sleeping questions
 
Jon's 4-21 reply to Mary's 4-21     consider the timing
 
Sharon S 4-23     intro, EF questions & more
 
Susan B 4-23     questions about "episodes" & more
 
Mary's 4-23 reply to Jon's 4-21     meds
 
Marion M 4-23     update, new problems, how to tell children?
 
Charlotte 4-23     anyone had a cardioversion?
 
Liz C 4-23     CoQ10, wobbly walking & other questions
 
Virginia R's 4-23 reply to Mary's 4-21     also update on dad, Dina & more
 
Jan 4-23     seek others in same situation
 
Ronnie C 4-23     intro, exercise & more
 
Jon's 4-23 reply to Sharon S' 4-23     numbers, a-fib, arrhythmia & more
 
Jon's 4-23 reply to Susan B's 4-23     your dad & hospitals
 
Jon's 4-23 reply to Marion M's 4-23     telling children of parent's illness
 
Jon's 4-23 reply to Liz C's 4-23     CoQ10 start dose
 
Robin 4-25     update, thanks, vision questions
 
Ben B's 4-25 reply to Sharon's 4-23     EF, ailing hearts, meds & more
 
Bill D's 4-25 reply to Charlotte's 4-23     cardioversion
 
Bill D's 4-25 reply to Virginia R's 4-23     cough possibility
 
Bill D's 4-25 reply to Jan's 4-23     CHF, some questions & possibilities
 
Bill D's 4-25 reply to Ronnie C's 4-23     CHF info & more
 
Annie G 4-25     sodium questions, eating out & more
 
Jon's 4-25 reply to Annie G's 4-25     sodium warning pamphlet
 
Kathy K 4-26     questions about mom's end-stage illness & appetite
 
Charlotte 4-26     heading to the hospital, very worried
 
Jon's 4-26 reply to Charlotte's 4-26     meds, hearts & more
 
Charlotte's 4-28 reply to Jon's 4-26     update
 
Karen P 4-28     survey/questionnaire question
 
Jenny 4-28     CHF questions
 
Paul B's 4-28 reply to Kathy K's 4-26     possibilities
 
Jodi's 4-28 reply to Chrissy's 4-18     coping
 
Bobbi Z 4-28     right sided failure questions
 
Karen D 4-30     update on Bill, prayer request
 
Meg 4-30     not sure what to do or how
 
Jon2 4-30     update, questions about Cordarone, Coreg & COPD


Charlotte, April 1, 1999 - Hi, I'm here again. Another day at the hospital with no change. My husband is still in atrial fibrillation. The doctors were in yesterday and said the Coumadin has thinned his blood finally. They had to put him back on oxygen to help his breathing but his heart rhythm has still not reversed. They were going to get him up today and see how he is when walking and do some further tests. They said his ICD. is working the way it's should. They said it could take anywhere from a week to 4 weeks to reverse his heart rhythm. So far he has 3 different doctors coming in to see him and now today, they want a sleep analysis on him. Well, I better get ready and head to the hospital.


Bill's April 1 reply to Charlotte's March 31, 1999 - Hi Charlotte, If they check your husband's Pro-Time twice a week, he shouldn't have problems of bleeding to death. My friend Ned has been on the stuff for almost 15 years now. I just read they came out with a Pro-time test box you can use at home. They are expensive but maybe they would lend him one for a while. They are giving him amiodarone in hopes of stopping the atrial flutter which tends to "pool" his blood in his heart chamber and might cause a stroke. Bill. billdog@gate.net


Bill's April 1 reply to Dan B's March 31, 1999 - Hi Dan, Unfortunately we often see folks here whose children have heart problems leading to CHF. The more you know, the better chance you have of understanding your son's illness and helping make intelligent choices as to his treatment. Go to Jon's "Site Index" at the top of this page and study the information. You can also read posts from others with children and babies with CHF. It will take you some time but read through The Archives on Jon's Loved Ones posts. I know Loma Linda is a foremost center for children's transplants. Bill. billdog@gate.net


Charlotte, April 2, 1999 - Hi everyone, Good news. I brought my husband home yesterday from the hospital. I have to take him Monday to have his pro-time tested and wait to hear from the doctor as to the next step. I picked up his medicines at the drug store on our way home. We sat down and I wrote out a new medical card for us both to carry with us with all his medicines listed. When we got ready to leave the doctor, he asked me to step outside for a moment and then he suggested that I should get my husband to sign his Living Will and Power of Attorney Papers as soon as possible. Did he throw a bombshell my way or what? I know we all should do this but the thought of it is scary. How do you go to your spouse and say, hey, we need to get these papers signed ASAP? Any suggestions?


Susan Rose, April 2, 1999 - Hi, After a rather brief discussion about hospice care with the social worker, she was not at all interested in talking about it and she has recommended a nursing home. The doctor said dad is in the final stage of CHF and now out of the blue, he said dad probably has cancer. As far as a biopsy, he said dad is to weak to even have a needle biopsy. I don't know, I'm starting to lose faith in this guy. At this point, I'm considering dial-a-psychic, I think they may have more answers than this doctor. As far as switching doctors, my mom is from the old school, where doctors are right up there with God. She cringes every time I ask questions. Thanks for your advice, I'll keep you posted on dad's condition. Susan. ladyred69@hotmail.com


Bill D's April 3 reply to Susan Rose's April 2, 1999 - Hi Susan Rose, Perhaps you could convince your mother to at least get another doctor's opinion based on: first, he thinks your dad has kidney disease and a week or so later, he thinks your Dad has cancer! List all the medicines your dad is taking, the doses and when he takes them, then take the list to a pharmacist. Better yet, a clinical consulting pharmacist! Pharmacists know far more about medicines than doctors do. At least see what the pharmacist says. Ask the doctor if he thinks your dad has less than 6 months to live. If he does, hospice may be the place for him, at home or in their facility. Bill. billdog@gate.net


Bill D's April 3 reply to Charlotte's April 2, 1999 - Hi Charlotte, Don't you think your husband has thought about dying? He isn't bringing it up because he thinks it will frighten you. You must bring it up so he will know you have been worrying about it too. Start with the Living Will part. Say to him, "If you're unconscious and can't speak, I want them to know how you want to be treated. If there's a chance of your dying, do you want them to treat you agressively or not?" It's not far from there to asking him for a will. It will give him something to think about other than being so sick. You don't want him to die intestate! The lawyers will take everything he has. Bill. billdog@gate.net


Claire F's April 3 reply to Dan B's March 31, 1999 - Hi, There is no greater suffering than having an ill child. I have CHF as well as having watched our oldest suffer. Getting as much information as you can is the best approach. Pediatric transplants are similar to any other transplants; the more experience the providers have in that type patient, the greater the chance of success. You are right in exploring the Loma Linda clinic. The children in our family are all older (adolescence and teen agers). The next thing to remember is take care of yourself and the other important relationships in your life. One person cannot be a parent alone and it is too easy to transfer your pain to other loved ones. You will make mistakes but there is always another day. God bless.


Gus R's April 3 reply to Charlotte's April 2, 1999 - Hi Charlotte, I'm a CHFer so my views on Living Will and Power of Attorney Papers might not be the best for you but I'll throw out a couple of ideas anyway. To break the ice, you might mention that these are things most of us avoid because we don't want to think about poor health when we are well but everyone should have these documents filled out and ready to use if necessary. Then you put your money where your mouth is and both of you fill out these papers. I hope and assume you have no need for them now but many of us will someday, so do it now while your husband is doing his. Then you have yourself covered and it has become a family project instead of something he must do, or have done to himself because he has health problems.
     By Power of Attorney, I assume you mean POA for Health Care, which in Illinois at least, is different from a Statutory Power of Attorney but you might consider doing Statutory/Property ones someday also. Your hospital or dox office should be able to provide you with the forms you mentioned. There is also a "new and improved" form of Living Will called Five Wishes, which is legal in most, but not all, states. Someone here introduced me to it a few months back and I like it. It lets one put a little more detail into their choices than the standard form does. It can be found at the Aging With Dignity Website at: www.agingwithdignity.org/awd/index_new.html, where you can download it in PDF format, or there is a snail mail address for a copy. It is free but they request a small donation for their copyrighted document. Legally I can't send you a copy but if you have problems getting one and want to see it, maybe someone here will bend the rules enough to get you a copy.
     One last suggestion: If he has executed a regular will, you might mention that he likely did that so his favorite car or home or whatever, is treated as he wishes when he can no longer do it, and doesn't he deserve the same consideration? Good luck, Gus R. gus13@net66.com


Stefanie, April 5, 1999 - Hello, I would like to thank everyone for their support and encouragment. I've only posted once before but so much has happened since. My mom suffered a major heart attack in February and was told she has CHF. Her EF was 10-15% and she was almost an invalid. I was scared that I was going to lose my mom after reading these posts. Mom couldn't do any of the things that others I had read about with CHF could do. She could dress herself and get to the bath but that was about it. She had to use oxygen while she showered.
     One afternoon, out of the blue, she brought her dirty clothes to the utility room, then she walked out on our deck. Now she has the good days and the bad days I've been reading of. Her heart doc says she is getting a little stronger, so he has decided not to put her on the heart transplant list. We are all taking this as good news. I guess it just took awhile for all of her meds to kick in, with a lot of prayers. At first, I thought mom was sure to die at any given moment but now it seems like we will get to keep her around for a good while longer. We all can't help but feel optimistic. I almost feel as if her turn for the better is too good to be true. Thanks for listening! stefanievoss@hotmail.com


Tom, April 5, 1999 - Hello, I have been coming to this site for about a month now to obtain information and strength. I have never posted before but tonight I feel a need to. It is with a very heavy heart that I tell you last night my father lost his battle with CHF. I will miss him so! I spent at least a few hours with my dad every day for the last 30 days while he was fighting to regain his health. These were the richest days of my life. If you have a loved one with CHF, go out of your way to be with them as much as you can because things can change so quickly. Good luck and good health to all of you and your loved ones. Live every moment. Thanks for listening. Tom. natsky@aol.com


Alice, April 6, 1999 - Hi, My husband Frank, had an LVAD implanted on 3/26. This surgery followed many years of heart problems, starting in 1987. In 1995, he developed CHF. He did quite well until December of 1998, when he experienced sudden cardiac death while exercising at the hospital in cardiac rehab. Quick and professional work on the part of hospital staff saved his life. Then, on 3/11/99, while on vacation in Texas, he suffered a severe heart attack, was flown to Bryan Hospital in Lincoln, Nebraska via air ambulance and received an LVAD on 3/16. At this time, he remains in the hospital recovering from surgery and awaiting a transplant.
     Is there anyone here who is experiencing life with an LVAD? Frank will be discharged in May and I am looking for support from other spouses who have experience with this device once the patient is discharged. Thanks for any information you can provide. Frank is 57 years of age. alfras@huntel.net


Dina Rice, April 6, 1999 - Hi, I just wanted to let you know that John made it through his defibrillator surgery Monday morning and is already home Tuesday afternoon. I know he will get more rest here, since I don't plan on coming in every 3 hours tonight and poking at him! He did say his incision is really painful. He said it picked him clear off the table when they tested it this morning! He is worried that it will go off at bad times and that he could hurt himself or someone else. He's not to drive for a month and then will be re-evaluated at his first checkup, when they see how often it has had to go off. I hope that he's able to drive eventually, a 30 year old who can't drive is one bored guy. If he gets to drive, maybe he can start thinking about a new career or something to cut the boredom and depression. I hope all of you had a good Easter weekend and are having a healthy week. Dina. jmrice@ipa.net


Robin, April 6, 1999 - Hello, This is the first time I have seen this board and I am happy that there is support for families that have to face CHF in their loved ones. I am the 38 year old daughter of a 67 year old father. As I read these posts, my eyes fill up. My Dad went thru 6 way bypass surgery 10 years ago and has been in the hospital 3 times in the past 5 months. He smoked all his life. I don't think he is able to smoke now. The nicotine patch seems to give him some energy. I don't know his EF. I just know that during his last visit to the ER, they put him on a ventilator and called the family because his doctor was sure of a fast death but about a week later, he was released. Like someone else said, when he was released from ICU, he was so weak he could barely walk.
     We have started 20mg of CoenzymeQ10. As stated above, he has good days and bad days but the weakness just doesn't go away, and he's losing weight. He has probably lost 5-10 pounds in the past month. He has no appetite, no energy, and it is a major effort for him to talk. He is almost constantly on oxygen. Last week, he was so happy to tell me about a bowel movement he had, which makes me believe there is some difficulty in that area. It was great to spend Easter Sunday with him. It is just heartbreaking to not be able to do anything to help him get well. I see this man who was once the strongest man I knew, now so depressed and weak. It is even more difficult on my mom, who watches this on a daily basis. I have asked that she increase the CoEnzymeQ10 but he is currently on so much medication that he sometimes throws it up. He went back to the doctor last week and his doctor said there was no improvement, only things were worse because he had acquired a cold. The doctor wanted to put him back in the hospital but Dad refused. They gave him antibiotics in pill form. All I ask is that God not let him suffer, and that he is comfortable for the time he has left. How do you prepare to lose your father?


Bill D's April 7 reply to Robin's April 6, 1999 - Hi Robin, I'm your dad's age and I have CHF too. If you'll give me all your dad's medications, the doses, and what time of day he takes them, I might be able to help. Some of the meds can cause loss of appetite, make you nauseous or give you constipation or diarrhea. Maybe there's one that you can ask his doctor about. I look them up at The Mayo Clinic Pharmacist CD. Does your dad have a Living Will? If he becomes unconscious, what treatment does he want? Treatment to live at all costs, or treatment that will let him just be comfortable? You or your mom should bring this up. Tell him, "If there's a chance that he will die,...," He'll want to talk about it. Be sure he has a Will too! Talk to the hospital's social worker. See what his choices are. I'd want my wife or daughter to do those things for me. Bill. billdog@gate.net


Paul B's April 7 reply to Robin's April 6, 1999 - Hi Robin, I'm sorry things seem to be so bleak these days. I lost my father to CHF 6 months ago. How did I prepare? I did everything I could to help him while I could but I also recognized that no matter what I did, his time was going to be limited. Up front, I accepted the fact that God would step in when we could no longer shoulder the burden. When we ran out of options, He did. No matter what, know that you are human and there is only so much you can do. Everyone wants more time with their loved ones but sometimes that's not possible. If you do as much as you can and know your limitations, you will not have any regrets. Prayers and good wishes to you and your family. wwhc@miworld.net


Kristine Conner, April 9, 1999 - Hello Everyone, I am a medical writer who is currently working on a new educational Website on heart failure for the American Heart Association. The AHA decided to take on this project after receiving multiple requests for more extensive information about heart failure. I work with a medical communications company that has been hired to do the research and writing for the site.
     The AHA realizes that caregivers play an essential role in managing heart failure. Therefore, it has decided to target family members as well as patients as the audience for the site. A "Caregiver's Guide" will be included to address specific issues of concern to this group. We believe that the site will be much more effective if it actually features advice from caregivers themselves. So I am seeking caregivers who might be willing to participate. If you're interested, please e-mail me with your best advice for other people who are caring for someone with heart failure. What one or two steps did you take that made a real difference in your loved one's condition? How did you make these changes part of your life? How might others benefit from your experience?
     When you send your advice to me, please include your gender, age, past or present occupation, hometown, and your relation to the person for whom you're caring. Please also indicate whether or not you'd be willing to be contacted by phone. The AHA wants to feature 2 or 3 caregivers, and hopes to include people of different ages and backgrounds. Therefore, we may not be able to use all the responses we receive. However, all of them will be used in some way to shape the information we include on the site as a whole. Please feel free to e-mail me with any questions. I look forward to hearing from some of you. Please help me (and the AHA) help others in your situation. Gratefully, Kristine. kconner@bellatlantic.net


Robin, April 9, 1999 - Hello again, Thanks so much for your kind words and thoughts. I will be visiting dad this Sunday and I will ask my mom to write down Dad's prescriptions, dosages and when he takes them so that we can try to narrow down what's killing his appetite. In the meanwhile, dad has been taking 10mg of CoEnzymeQ10 twice a day. Mom bought CoEnzymeQ10 in 50mg tablets and is checking with Dad's doctor if that dosage is ok. Dad is 6' tall and 136 pounds. Can anyone suggest if 50mg is too much or not enough for my Dad?


Susan Rose's April 9 reply to Robin's April 9, 1999 - Hi Robin, I know just what you are going through. My dad is also in the final stages of CHF. He left the hospital unable to walk and was on so many medicines that he stayed confused much of the time. He has gone from 178 to almost 200 with edema, now he is at 138. I spend all my time with him and I can't believe he is the same man that used to be a truck driver. He is now just a shell of a man. I haven't been able to come to terms with my feelings about losing my dad but I know it is inevitable. I too pray he won't suffer. My prayers and thoughts are with you. Peace. Susan. ladyred69@hotmail.com


Bill D's April 10 reply to Robin's April 9, 1999 - Hi Robin, 20mg of CoQ10 is a relatively small dose. If you would post your e-mail address, we wouldn't have to wait for Jon to put up the posts to talk.
     Susan Rose, did you see what I wrote Robin about being sure your father has a living will? Some doctors feel they have lost the battle if their patient dies. Here at Jon's Place, we've seen posts from children whose parent's doctors didn't know when to stop. If a parent does not have a living will to tell the doctors what he wants, they have no way to know what he would prefer they do. Adult children may not think to give their parent a pencil and pad to write their current wishes on. Bill. billdog@gate.net


Charles D, April 10, 1999 - Hi, I just found your Web site and it looks as if it will help a lot. My wife has CHF and we were just told it has accelerated. I will browse more later. Thanks for the info. Do you have a chat room? Charlie. ccasonsr@aol.com
 
Jon's Note: See this page


Dan Bolinger, April 10, 1999 - Hi, Just a note to thank all of you who encouraged us and are praying for us. We are getting our heads screwed back on, although our HMO has thrown us a curve ball. We had a pediatric cardiologist and he was out of network. At first, it was ok but they said no more, choose one of ours. We have discovered that choosing a PC is like choosing which grab bag to get at the five and dime. You know, they all basically have the same contents inside but you're just not sure what you're getting. I have looked through the site but is there a big difference in choosing a pediatric cardiologist and a plain old cardiologist? Any pointers? Thanks. bolinger@integrityonline7.com


Jon's April 10 reply to Dan Bolinger's April 10, 1999 - Hi Dan, I don't know, not having been faced with it. However, a medical study came out in the past 2 weeks which actually confirmed that a pediatric doctor who communicates really well with the family has better patient outcomes than one who is not "user-friendly." No joke - a real medical study at a large USA hospital used that term. So maybe how you and your young son relate to him is more important than to adults. Jon.


Heather A, April 10, 1999 - Hi, I just found this forum a couple of days ago. My 87 year old mother has CHF, which started when she was admitted to a local hospital 2 weeks ago with dehydration, probably from flu. They over-hydrated her, and she hasn't been able to throw off the excess. Her ankles are swollen and her lungs contain water. She's in a nursing home now but extremely anxious to get out, of course. My brother and his wife plan to take her in for a while after she's discharged from the nursing home. He doesn't think she will ever be able to live alone again, and my sister feels that Mom belongs in a nursing home permanently. The thing is, I've told Mom she's got options and she'll probably recover, but now having talked to my brother and sister, I'm not so sure. Mom and I took a 2 week vacation in Hawaii just 6 months ago, and we had a great time. She wasn't sick a day, then. Maybe I'm just having trouble accepting the inevitable. Maybe I shouldn't be encouraging Mom to think in terms of independent living but she had an attack of CHF 4 years ago, also because a hospital over-hydrated her following a knee replacement operation, and she recovered completely from that and has lived independently since then, till about a month ago. I guess my question is, is it cruel and unrealistic of me to be encouraging Mom's thoughts of independent or semi-independent living? Thanks. At least, I've vented my concerns and that's a big help. hlee@foryou.net


Jon's April 10 reply to Heather A's April 10, 1999 - Hi Heather, I don't know. If she is capable of it, it isn't cruel. If she is not capable of it, it may be cruel. Since we cannot know if she can or cannot recover that much, we just can't say. The main thing is for you to educate yourself, communicate well and thoroughly with her doctors, her, and your family, and then to try and set your emotions aside briefly while you evaluate all that info. Good luck. Jon.


Pam, April 10, 1999 - Hi, I would like to have a friend who has a hubby with CHF and DCM. I am 29 as is my hubby whose bio is posted as David K. I just get so scared sometimes and I know that my hubby does and we avoid this subject like the plague, like if we mention it something bad will happen. It will be a year in June since David was diagnosed and it has been hard on all of us, in every way imaginable, David especially. That manly pride of "taking care of my family" has suffered a tremendous blow, since he is disabled. I wonder if he will ever go back to work. I know this is a day by day illness. If David feels good today and does anything, he'll pay for it tomorrow, and will be soooo grumpy and want to stay in bed. I guess I just want to know that I am not alone. I really need a friend who understands; all e-mails will be answered. Jon, you have been such a blessing to me, I just want to say thank you, and God bless you and your family. My personal e-mail address is pjk29@yahoo.com
 
Jon's Note: Pam, my wife's address is musicmom@geocities.com. Her name is Linda


Paul B's April 10 reply to Robin's April 9, 1999 - Hi Robin, From what I've read, 50mg twice a day would be within the limits but should be worked up to gradually, preferably with a doc's supervision. Without getting into a long drawn out debate, I can tell you my dad had a decent rebound when his doc cut his Lasix back. It seemed to help his ability to exercise and helped his mental function. We got concerned when Dad dropped to 129lbs and after the Lasix cut, he eventually rebounded without edema to about 141. That's when his doc put him on Coreg and he was unable to stand the increases. A word of caution: every case is different, so don't take my one case scenario for any more than what it is; something to be considered but not anything miraculous! Enjoy the time you have with him and best wishes to you and Susan Rose.


Vicci, April 10, 1999 - Hi, My dad is 84 with CHF, along with diabetes mellitus and asthma. He suffered a stroke about 5 years ago, too. I am leaving for Anaheim in 3 days to assist in his care. From what I am told by relatives, they now want to put Dad in a drug study for the cardiovascular problems. I am somehwat skeptical due to the fact that I have a fear he would probably get the placebo. Fortunately, I will be down there when they give him notice, if he's accepted. What questions should I ask before he is enrolled in this study? I do not want to lose him because of a study drug. Please help. RonVicciE@aol.com


Jon's April 10 reply to Vicci's April 10, 1999 - Hi, The number one question is, "Is it a phase 2 or Phase 3 trial?" Phases are explained at The Manual. Phase 3 trials are safer, in general. Jon.


Lynn, April 11, 1999 - Hi, I'm writing because my grandfather just died of CHF on Tuesday, April 6. It was his 66th birthday. I just want everyone to take care of themselves and listen to the doctor. Thanks for reading my note. lcole11045@aol.com


Charlotte, April 12, 1999 - Hi, How long does it take for a doctor to receive pro-time results from a lab? My husband, Richard, went last Monday morning for his first pro-time test (for Coumadin use). Both he and I have called the doctor but no one has returned any of our calls. Charlotte.


Robin, April 12, 1999 - Hi, It's me again. I just compared my Dad's meds with info in The Manual. I don't see any info on amiodarone or pacerone, Is there any info on this drug? Also, in reading info in The Manual, I don't see which drugs may cause a decrease in appetite. Can someone help me here? I'm trying to increase my Dad's appetite to strengthen him. Thanks!


Jon's April 12 reply to Robin's April 12, 1999 - Hi Robin, The Manual is one page on a site with well over 200 pages. There is amiodarone info available on several pages. You can download heart info text files with good amiodarone info from the Site Index. There is a site search engine at the Site Index which finds info about amiodarone at many pages on this site, including Heartbytes, New CHF Meds and ICDs & More. The Manual's drug info is the basic basics for heart failure, not a comprehensive list. That would be one very long page indeed. <G> Amiodarone (Cordarone or Pacerone) is not actually a CHF drug; it is for arrhythmia. Use the drug links at the Links page to find specific info. The links there are extensive and very good. Jon.


Robin, April 12, 1999 - Hi, Well, I spent some time with Dad yesterday. He has slightly improved, has a tiny bit better appetite, is a tiny bit more alert and he was even paging through a fishing supply book. He does have this shaking of the hands that bothers me. He seems to have accepted the fact that he won't be working for a while and that is encouraging. Worrying about needing to work is counterproductive. I think he may be hoping to strengthen enough to go fishing. I don't want to get my hopes up. Anyway, here goes with his list of meds: alternating daily doses of 2.5mg and 5mg Coumadin, 10mg Isordil 3 times a day, 6.25mg Coreg twice a day, 60mg Lasiz twice a day, 20mg Accupril, 10mg CoQ10 twice a day, 50mg Aldactone twice a day, 200mg amiodarone twice a day, 0.125mg Lanoxin every other day and 40mg Pravachol daily. It's a pretty long list. Mom decided that when the current bottle of CoEnzymeQ10 is gone, she wil use 30mg pills, and will give one to him twice a day for a total of 60mg daily.
     Paul's circumstance where he cut back Lasix and felt better is interesting. has anyone else had any scenarios? Reviewing Dad's meds, what is the culprit that is causing loss of appetite? The good news is he is not taking on fluid. Thanks for your help and suggestions!


Suzanne, April 12, 1999 - Hi, My husband was diagnosed with CHF in February, 1998. After a 9 day stay in the hospital, he was discharged with a 35% EF. One of the meds prescribed was 3.125mg Coreg. Within a month, he developed severe stomach pains, nausea and couldn't keep anything down. After going to the ER, he was admitted to the hospital and our doctor was going to call in an internist for the stomach problem. Anyway, to make a long story short, his condition worsened and they sent him by ambulance to Albuquerque, 200 miles away. After running tests on everything, they did a heart cath, determined that he had a 10% EF, put him in CCU, told him they were going to screen him for the heart transplant list and started pumping in all kinds of heart meds. He immediately improved. After a 27 day stay in the hospital, he was discharged with new meds; Coreg was not prescribed. He was doing pretty well with a 21% EF until January of this year when he went in for his regular 3 month checkup with the cardiologist.
     At that time, he complained of waking up with shortness of breath at night. The doctor prescribed 6.25mg Coreg twice a day. Since then he has developed the same severe stomach pains at night, about 2-5 hours after sleeping, in the morning about 5AM, and throughout the day. Our Primary Care Physician referred him to the internist who did a scope and could find nothing except "mild gastritis." He previously had a reflux problem, but they did one of the "wraps" 11/2 years ago and that seemed to solve the problem. He went back to the cardiologist a couple of weeks ago and he increased the Coreg dose and thought the stomach problems were probably because of all of the medications he was taking. In looking back at prescriptions when doing our income tax, I noticed that he had been taking Coreg last year and it seems to me there is a connection here. Has anyone else had this side effect? We are going back to the cardiologist in a week and am going to bring this up to him. I'm sorry this is so long. I would appreciate any input anyone out there has. Thanks. bobsuz@rt66.com


Annie G's April 13 reply to Charlotte's April 12, 1999 - Hi Charlotte, Clotting times like a PT and PTT are usually done the same day but it differs from doctor to doctor and from facility to facility how quickly the doctor will get results. Any office should be able to contact the lab and have results for the next day or even the same day if it is really important. Try telling the office that you'll wait on the line while the nurse gets you the results. In the future, see if you can get the doctor to agree to let his office staff release lab results to you. Some doctors want a follow-up visit just for that, others don't want the staff releasing that info. It's worth a try. Just make sure that he writes a note on your husband's chart indicating that tests results can be released to you by his staff. I hope this helps. Where I used to work, we would get stat Pt, Ptt results in about 45 minutes - a community hospital. Annie, wife of 46 year old Steve, DCM, EF 18-25%. steven.harold@sympatico.ca


Gus R's April 13 reply to Charlotte's April 12, 1999 - Hi Charlotte, I think the time required for results from lab tests varies a lot depending on the lab, the test involved, the doc involved, and who knows what all, but waiting over a week for PT Test results sounds too long. One would assume that someone in the chain would have contacted you quickly if the results were high enough to cause problems, but one shouldn't have to assume things like this. Unless there are some very good reasons for going to this doc, I would consider looking for another one. I see no excuse for someone in the dox office not returning your phone calls. In fact, I see little excuse for a return call being necessary, since I think some kind of answer should have been given to you at the time of your first call.
     I don't consider my dox, the clinic they work for, nor the HMO in the middle of it, to be the best, but barring holidays and weekends they call me with my PT Test results the next day. I can only remember 3 exceptions to this in the roughly 100 PT tests I've had over the past 6 years. Twice it was 2 days, and once it was 3 days because something happened to the blood sample and we had to start over. Good luck, Gus R. gus13@net66.com


John M, April 13, 1999 - Hi, My mother who had CHF and put up a valiant fight against it, passed away March 28. I am very greateful for so much of the advice I received by scanning the posts and other areas of this wonderful site the past year. Looking back, we were lucky. It was mid-December, 1997, when the doctor told us that mom had 2-6 weeks to live; we got one year and 3 months. The last month was the toughest. I want to share some thoughts with those of you who are in the position with your loved one now that I was in a couple of years ago.
     The most important advice anyone can give you is that you choose your primary care physicians wisely. Mom gave me Power Of Attorney Durable Health Care and Financial Affairs, and I pretty much managed her affairs. I helped her choose a new doctor when she went into the nursing home in December of 1997. We thought that doctor would do a good job because she seemed interested and would see her at the nursing home. It turns out she visited her only twice and then stopped. When the doctor had a serious problem with being called when mom fell in the nursing home, I hit the roof and fired her and hired a practice that specialized in geriatrics, had experience in CHF, and also had 4 doctors that backed each other up and visited patients in the nursing home, hospital, and were easy for the family to reach almost anytime by telephone. Getting the new doctors helped mom significantly because their approach was, "sure we know she is terminally ill, but that doesn't mean she has to be uncomfortable and if she needs any kind of care, she is entitled to be treated with dignity, kindness and caring." You would expect that from any doctor but it really is not something all doctors have. Some doctors are good at the technical things. A really good doctor is good at not only the technical side, but the human and social side, too.
     Another major factor is being involved as a family. I became like a staff member at the nursing home because I was there so much with my mom. It was difficult and required lots of sacrifice but I want to tell you, no one took better care of their loved one than we did and the staff paid more attention to her simply because of that involvement. It really is important. It is also important to convey a sense of caring and feeling to the loved one so that they don't feel so alone in all of this.
     Finally, I was with mom the last 2 days when she had her eyes open. She couldn't move, the edema was awful; but I talked with her since she couldn't speak. I knew she could hear me and it was important that she know it was ok to go, she was going to a better place. I also told her everything she did right and tried to make her feel as if she really accomplished something with her life. I wanted to make her feel as relaxed and as loved as possible because I knew this is what she needed. I held her hand when I was there so she knew I was there, and I spoke softly but loud enough for her to hear me. We had many people at her funeral. She was loved very much. It was just as we had planned it with her. It was the only funeral I have ever been to where I felt good during and afterwards. I look back at the time I spent with mom the past few months as some of the most rewarding of my life. Now, I can honestly say I did the very best I could for her and she knew that, too. If you can say that, you have done your job well. All you caregivers are angels and do so much good. Hang in there and know that all that you do is so appreciated so much and that the feeling of helping your loved one is like no other. I'm sorry for the extremely long post but I feel better for sharing. Thank you all for everything! jamiddl@ibm.net


Maria, April 13, 1999 - Hello, I just came upon this site and am happy to hear from others in similar situations. My father who is 81, has CHF, and has had a heart condition since his 50s with 2 bypass surgeries. Over the last 8 or so months, his condition has gone downhill, with more bad days and having little energy to do anything. Just last June, my parents had a wonderful 50th wedding aniversary party and he was out there dancing and enjoying every moment. It's sad to think of how different he is now. He's on all the CHF meds. He went on Coreg last fall but all and all, they are not helping him that much. He's been very frustrated in his decreasing ability to function.
     He saw a cardiologist (his cariologist was out, so it was another one in the office) and my dad expressed his frustrations and the doc told him, "Well, you're dying," really tactful! My dad says he was glad he was told this, though. He has made other references to dying recently. He wrote his newspaper obituary and indicated what songs he wanted played. He gave me and my sisters an article about living trusts. Anyway, I'm trying to spend as much time as I can with him. Thanks for your 4/5 post, Tom, I feel I should spend more time with him! We had a scare with him 2 weeks ago and we thought he wouldn't last the week. I took time off work and spent many days with him. He's since somewhat stabilized, and I'm back to work but have asked for Mondays off. My 3 sisters and I have divided the week up to help in his care, as my mother is up there in age too and can't manage him alone. We have hospice care that is also very helpful. Well, thanks for letting me share with you all. I'll keep you posted. mia@gene.com


Jon2, April 14, 1999 - Hello, my Mom is back in the hospital after experiencing some breathing problems. Her doctor said she was slightly congested but is responding well to a temporary increased Lasix dose of 40mgs. The doctor also said she has anemia, a low hemoglobin count. Has anyone experienced this complication with their congestive family member? They are doing tests now to ascertain the cause of the anemia. Mom is on oxygen and is tired a lot but other than that, comfortable enough. I am wondering if it might be a side effect of Cordarone or Lasix, which she takes. She also takes levothyroxine, paxil, a potassium supplement and aspirin in a form the doctor says won't damage her stomach. Her heart rate and blood pressure are real good. She is also diabetic on insulin but is maintaining her blood sugars well. jonjensen@uniserve.com


Karen Phillips, April 14, 1999 - Hi all, My husband is 58. He has an EF of 17-20. He had surgery in September of 1998 for mitral valve replacement and has had 2 bypasses. He has a very enlarged heart, tremendous edema from his tippie-toes to his upper abdomen and can therefore hardly walk because of his swollen legs, not to mention fatigue. My question is: occasionally he gets sudden, severe cramps which draw his thumb and forefingers together like spasms and they hurt a lot for a while till they settle down. Is there any connection to CHF, do you think? Take care, all. phillik@televar.com


Jon's April 14 reply to Karen Phillips' April 14, 1999 - Hi Karen, Of course, it could be any one of a million things but this sounds like either dehydration or an electrolyte imbalance to me. Does he have blood tests regularly to check his potassium levels? Believe it or not, you can be dehydrated and swollen up like a blimp at the same time. If he is dehydrated, his total blood volume in his whole body is insufficient to maintain his vital processes correctly. Still, I'd go for the electrolyte check first. Improper potassium levels can cause severe muscle cramping and the hands are the first place it usually happens. I've had this happen to me - my whole upper body contorted uncontrollably - and it hurts! It is very important to have this checked regularly. If it isn't, get it done now. Kep us posted! Jon.


Carolyn B, April 14, 1999 - Hi, I noticed discussion regarding Coumadin and response time in reporting INR values. It does vary from clinic to clinic. A good point to remember is always report any changes to your doc or coagulation clinic; any new medications or supplments or if you increase any medications. Also, keep in mind if you become more active in the spring and summer months, getting more exercise, your body will "use up" the Coumadin. If you know you have had a change, it makes the timely follow up of the INR even more important. Prolonged exposure to heat can change the outcome of your INR so if a trip to a sunny place is in order, be aware your INR may go up. The best plan really is to aim for consistency and hope for the best. littleone@integrityoneline.com


Linda A's April 14 reply to Charlotte's April 12, 1999 - Hi, Regarding the PT test, my husband has been on Coumadin for over 3 years and has a test done once a month. His cardiologist uses the ProTime Microcoagulation System which is similar to a glucose monitor. It requires only 2 drops of blood from a finger stick which is placed on an electronic device and displays the results on a screen in a few seconds. This is done in the doctor's office. The FDA has approved the device for home use with a prescription. You can find more information about this machine at Medscape -
www.medscape.com/govmt/DHHS/1997/mar/HomeTestForBloodClotting.html. Ralley0822@msn.com


David G, April 14, 1999 - Hi Jon, Thanks for the info on the ICD a while back. My wife (30) has since had another echo and MUGA. Her cardiologist is supposed to research some info on a new pacemaker/defibrillator that might lessen the impact of her chronic a-fib. We are fortunate that we have a caring and knowledgeable doctor. He is also a professor at a local medical school, so he stays current on all the new info. If I come across anything interesting, I'll let you know. Dagrez@aol.com


Dina Rice, April 14, 1999 - Hi, Is dilated cardiomyopathy worse than having CHF? I mean, once your usual 6 month window of improvement happens or doesn't, your heart will not shrink back if it hasn't already with medicine, right? So, does that really mean that your CHF symptoms can be controlled but the cardiomyopathy only gets worse and the damage is irreversible? How do the doctors know when to put a patient on a transplant list? They obviously don't ever know for sure, right? It's really not in their hands, it's a guesstimate. If the doctors tell you your heart can sustain you for only about 6 more months and then tell you that with your body height and build, it will take 2 years to find a matching heart, why do they not put you on the list? If you had atrial fibrillation and now increasing episodes of ventricular tachycardia, does this not mean your condition is worsening? We aren't getting answers. We need some honesty. If in all probable reality we only have a few more months of quality life together, we would be doing some things differently, like doing things we'd never done: going on trips, making memories for our daughter. Do you just have to bluntly ask the doctors in order to get any time-frame answers? I know they try to be positive but some reality needs to be addressed. riced@gardner2.dsc.k12.ar.us


Carolyn B, April 16, 1999 - Hi, Life changes quickly. My daughter saw her cardiologist on 4/14 because of her chronic cough. Her fractional shortening was 24% (which, is different from ejection fraction). They put her on a small dose of Lasix because of weight gain and fluid change in lung sounds. We went home and within 3 hours, she could not tolerate running and vomited. I pushed the issue and insisted she be seen again. Upon evaluation of chest x-ray and rapid stress, they determined she has pneumonia and strep. She was admitted to the childrens' hospital for overnight stay and was on IV antibiotics. She came home last night and is doing better. The whole event was fairly positive. I know they will listen a lot better to my concerns, because when a parent feels something is off or wrong, they are usually right. littleone@integrityonline.com


Charles D, April 16, 1999 - Hi, I hope I am on the right page, I seem to get lost. My wife has CHF and her heart is at 50%. My question is, how do you advise the family, such as their parents, brothers and sisters and of course, children? This is not a suprise to anyone except the condition of the heart but there are going to be some changes and it is important that the family understand what the norm will be for us. We have talked about writing a letter and just letting everyone know what to expect and also to advise them that some things that might upset them are only normal or to be expected and not to be upset. I have read The Manual and we are going to use some of the material in writing the letter but we both feel that writing a letter will allow us to give everyone the same information and eliminate any room for forgetting to tell one, one thing, and another, something else. My wife and I are 54 years old and live in St. Louis. Anyone wanting to communicate with us is welcome. Last but not least, we like to travel and go to theme parks. How does one get information as to accomadations for handicapped, in some parks they make arrangements for you to be able to get in front of the line, etc. I believe I am starting to ramble, so enough for now. Thank you. Charlie and Marilyn. ccasonsr@aol.com


Charlotte, April 16, 1999 - Hi, An update on my husband. Tuesday we got a call from his doctor's office telling him to stop Coumadin and go back for blood work Thursday. He did and when we got home, the doctor's office called and said no Coumadin because his blood is thinner then water. He started bleeding some from his gums for 2 days. He has to go back to hospital tomorrow to have blood drawn again. The nurse said his 3 doctors were going to meet tomorrow and we'll hear from them sometime after their meeting. We're scared. Why the testing so close to one another? Then the nurse tells me to keep a close eye on my husband for bruising and bleeding and if it happens to get him back to the hospital as soon as possible. DunninTN@aol.com


Chrissy S, April 16, 1999 - Hi, I haven't posted in a while but I do read posts every day and keep up with the forum. My mom is back in the hospital for the second time since September. She is 64 and continues to smoke, drink and not eat right. She is not doing well at the moment. I don't know what else to do to encourage her to take her part in taking care of herself. She just thinks we are picking on her about her habits. I have been successful in getting her to change doctors. She doesn't follow his advice any more than her last doctor but at least I am able to get answers from him about her care. I hate to sound so negative but I am torn between frustration and worry about her. Please pray for us. Chrissy. csmith2177@aol.com


Gus R's April 16 reply to Dina Rice's April 14, 1999 - Hi Dina, I think your post sums up the frustrations many of us have and the answer to most of your questions is that there is no answer. I think one should ask the dox blunt questions but you must realize that the answers will be educated guesses, not hard facts. After 2 weeks of tests during my first hospitalization in 1992, the cardiologist told me I probably had less than a year to live with my heart and offered to refer me to a transplant facility. I refused at first but did go a few weeks later. They said my cardiologist was probably right but since they had people waiting for hearts who could not leave their facility without one, many of whom would die there due to the lack of donors, I had their sympathy but could not be considered at that time. You and your husband might have more success at a different facility and I think your husband has more serious problems than I do but in general I think most of the hearts go to those who only have a few hours or days left. In that setting, those of us with months left, even if they are not of a very good quality, are considered fortunate.
     As to "doing some things differently," maybe everyone should do that. I'm not flippantly suggesting irresponsibity but today could be the last day of anyone's life, no matter what their state of health. This was very much in my thoughts last week when I went to the funeral of another of my "healthy" friends who rightfully thought they had another 20 years to live, instead of months like poor old Gus. Best wishes, Gus R. gus13@net66.com


Virginia R, April 16, 1999 - Hi everyone, I read the posts as often as I can and think of all of you. My dad goes in for a heart cath on Monday, April 19. I've just learned that he has right and left sided heart failure. I'm not sure when his condition changed and neither is he. We changed doctors. I looked up the best CHF clinics and called a few. I'm still shocked at the number of clinics who respond to the question of CHF specialist with "Well, he's a heart doctor and they deal with all problems of the heart." I called a clinic in Dallas and was immediately impressed. I explained our concerns in plain English. Before my father was even an official patient, we had a 24 hour on-call number and the nurse's name, as well as the back-up person. Within 15 minutes an appointment had been scheduled, we had instructions on which hospital to use, and more. This was all on a Friday.
    By the following Monday, they had most of his records forwarded from St. Luke's in Houston and Scott and White in Temple. His appointment was on that Wednesday. The doctor spent 2 hours with him personally. He was given a tour of the facility, saw the infusion room, and given some information on the doc! Dad was impressed. Our main problem has been in scheduling issues but with a doctor and nurses this involved, I feel relieved. I will head up there this weekend. I say all of this because if anyone feels their doctor is not responsive enough, call around! I could tell a huge difference in care based just on the initial call. He may be hospitalized after the cath for infusion therapy. God bless you all. Jon, tell your wife hello for me and hi to Linz. giniroberts@hotmail.com


Carolyun B's April 17 reply to Chralotte's April 16, 1999 - Hi, When the doctors told your husband to stop the Coumadin, did they mean to skip a dose or not to take any until his next protime/INR test? Make sure you understand the message. Nurses and docs have to warn you about any problems that can happen but a lot can be lost in the process. They just want to make sure that if anything does happen, you seek medical care. It is very common to recheck the protime soon after it has been high or above the target INR. Do you know what range they want the INR in (how thick or thin?) How thin was "like water?" Keep track of the test results - write them down. Switch to a very soft toothbrush as well. This may sound harsh, but something that is bleeding can be stopped. Problems caused by clots are much more difficult to deal with and certainly can have long term effects. I will be praying for you. littleone@integrityonline.com


Bill D's April17 reply to Charlie D's April 16, 1999 - Hi Charlie, Welcome to Jon's Place. How is Marilyn feeling? A 50% EF is almost normal. You could write your letter and Marilyn could stabilize for many long years. You'd have everybody waiting for her to get really sick and die. If I were you, I'd hold up on that letter for a while. Five years ago I told someone I was dying. I get embarrassed about it every time he sees me. He must think I'm crazy. Bill. billdog@gate.net


Jon's April 17 reply to Dina Rice's April 14, 1999 - Hi Dina, First, read The Manual! CHF is not an illness. It is a collection of symptoms caused by an illness, usually by a cardiomyopathy, which means heart disease - any variety. After you read The Manual, you will be able to ask more specific questions, which may have answers. Very general questions about illness usually do not have definite answers because they cover way too much ground at once.
     Also please read this post (let it load). It will give you an idea of the issues involved in whether a CHFer will be "cured." Yes, a heart may shrink to normal or near-normal size with meds after the 6 month window is gone. That does not mean he will be "well" or "cured" but it does help prevent snowballing problems such as valve leakage due to the stretch of a too-large heart and it decreases the chances of arrhythmia due to the heart's electrical pathways being stretched too far out of shape. ACE inhibitors are the drug primarily responsible for stopping remodeling or further enlargement of the heart and have been proven to help shrink the heart back to near-normal size. Read my ACE inhibitor page.
     As you can see, my main advice is to read up and then narrow your questions down a bit. We'll help all we can. :-). If you are having problems getting answers from your doctors, yes, you should bluntly ask. If you ask, and still get no clear, plain English answers - even an "I don't know" will do - get a new doc. See Virginia R's 4-16 post about getting a new doc. Jon.


Chrissy, April 18, 1999 - Hi, My mom is improving slowly, but she is sleeping quite a bit. She is on Atavan for nerves. Is anyone familiar with this med? It seems to make her quite drowsy. Thanks for your help and thanks for this site, so we all have a place to get some answers. Chrissy. CSmith2177@aol.com


Dina Rice, April 18, 1999 - Hello all, Thanks to everyone who replied to my last post. I was having a panicky day concerning John's DCM. You know, we caregivers go through good and bad days too. I'm a teacher and one day I was so distraught I had to leave at 9:00AM! We all refer to that day now as my mental breakdown day. I'm always perky and had put on a good show until that day and all my coworkers were going crazy thinking I'd finally lost it. At least now I was human. They were waiting for the reality of it all to sink in. I guess my question really was, is cardiomyopathy the worst thing to have? I know that it is worse than having valves replaced. I remember when he was diagnosed, they were hoping it was "just" his valves, which turned out to be ok. I know that to really give me a good answer on how bad my husband's condition really is, you would need his heart's measurements, which I don't have. I have copies of a lot but there are so many numbers listed that I'm not sure which ones are the ones to judge by. He hasn't had a Vo2max test. His EP doc didn't do one before the ICD was put in. They decided he didn't need it because they already knew he had to have the ICD from ventricular tachycardia and atrial fibrillation shown on Holters. They didn't want to put him through the stress of the Vo2.
     In reply to someone's e-mail last week, yes, I am an organ donor. I am also registering my daughter (age 4) on the list in case anything should happen to her. I've been writing Robin a lot and we are trying to see if Oprah would be interested in a transplant show. It's sad to think that if Oprah does a show on something, the whole world decides to get involved. She has that much effect on viewers, but whatever works, works! I have written Social Security and we are trying to take an active role in all aspects of his illness. We were discouraged that the doc said he's recommending 100% full disability but that his experience is that all cases are routinely denied the first time. That makes us mad so we're trying to strike before they do, everything short of getting a lawyer. If we need to later, we will.
     I know the best thing is to hold off as long as possible on a transplant. It is just frustrating to see someone this young be so sick. I know it happens with cancer patients all the time, so I really should not feel like it's a worse problem. At least he was diagnosed before it was too late and he has doctors who really know what they're doing and are aggressive in treatment. We return Tuesday to have his ICD reprogrammed. He went into ventricular tachycardia 4 days after receiving it and had to be shocked. After having it read, he'd actually had 2 episodes, the first occurring the night we brought him home from the hospital. It didn't require a shock. The EP called us in to have it reprogrammed after he'd been in. He had the ICD read by a nurse and didn't see the doc. So we don't know why she's reprogramming it. Does it mean he's worse (more sustained arrythmias) or what? I guess we'll know on Tuesday. I'm sorry this is so long. It helps to vent and talk, even if it's just to your computer! Thanks again to all of you. Dina. jmrice@ipa.net


Jon's April 18 reply to Dina Rice's April 18, 1999 - Hi Dina, You're not talking to your pooter - you're talking to us! We don't mind a bit. :-) I'm not sure how to answer your question about cardiomyopathy. I need a critical piece of the puzzle - worse than what? Cardiomyopathy means heart disease, and that covers a whole lot of territory - anything that can go wrong with a heart. When I was diagnosed at age 36, my EF was 13% and I was a goner, to judge by the numbers. Here I am about to turn 41, with an EF higher than my age. <G> While this isn't exactly a lifetime, it shows that there is a future. Remember that the best prognostic tool is how he feels, not what his numbers are. That future may be more uncertain now, but it is still there. Be sure to keep us updated and if the doc's staff don't volunteer information, ask. If they don't answer, insist. You pay their salary, and the doctor's as well. On those down days, please feel free to e-mail me and put yourself on our support and prayer list - that's what it's for. Jon.


Jack's April 18 reply to Charlotte's April 16, 1999 - Hi Charlotte, You got some good advice about the toothbrush but there is another thing that helps with bleeding gums: CoQ10. It is not being recommended for gum disease but it also slows down the bleeding in healthy gums. When I was on Coumadin, my gums would bleed for awhile after I brushed but after I started on CoQ10, I noticed that they stopped. Several months later I read the report on the use of it for gum disease and realized why my gums had stopped bleeding. There are a lot of uninformed people out there who will tell you that CoQ10 counteracts Coumadin effects and changes your INR but the manufacturers of Coumadin say this is not true. If anybody makes this false claim, use the search engine at Jon's Place to find my post that has the phone number so you can hear it for yourself. Jack. maddjak@hotmail.com


Ben B's April 20 reply to Dina Rice's April 18, 1999 - Hi, I am very sad when I read about your worry, so even though I usually post on the CHF side, I thought I would throw a comment in here. About cardiomyopathy, this is sort of a catch all term for every kind of disease of the heart muscle. It is sort of confusing, but I don't think it is possible to have CHF without having some sort of cardiomyopathy and you can be asymptomatic (no CHF) and still have cardiomyopathy. I would recommend Marc Silver's book Success With Heart Failure in addition to this web site, and of course, your doctors. I know your husband is very young but it seems like many people initially post in a panic thinking they need to get a transplant right away. Most people don't get transplants. There are only a few thousand a year, and transplant is not a cure all. As Dr. Silver says, it is trading one medical problem for another. So transplant is really for people who will die without one. I don't know if your husband is in this position but for most of us, heart failure is a marathon, not a horse race.


Virginia R, April 20, 1999 - Hi, An update on Dad. Dad's blood was too thin to safely do the right heart cath today. They have adjusted some medications. His prinivil is increased. They will increase it again in the office on next Monday and monitor for results. They put him back on 160mg Lasix in morning, and again in the evening, like his family physician had him on for years before. I met this cardiologist and was impressed and relieved. There continues to be concern with Dad's blood sugar levels. It looks like we may be changing endocrinologists as well. This is fine with me! At this time, the doctor stated that he felt he did not need to waste any time in treating Dad so the plan is to start with these medication changes, schedule the heart cath as soon as Dad is able to tolerate it safely and then fine tune the medications after this process. We are wondering, is this the Swan-Ganz Procedure or the treatment? Does anyone know? I forgot to ask at the doctor's office, but I do have the 24 hour hotline that I can call if I have any questions. I may just have to try it out. <G> giniroberts@hotmail.com


Jan, April 20, 1999 - Hi, I'm new to this site and hope someone can give me some info. My father was just released from the hospital 2 weeks ago, where they determined that he had congestive heart failure and an enlarged heart. A little background info: he is 81 and had a stroke in August of 1998. Since that time he has resided in a nursing home. Since he has been back in the home, he has had recurring bouts of vomiting. Does anyone know if this is a symptom of CHF? He has also lost his appetite and has eaten very little in the past 4 weeks. From what I can determine, this could be a symptom of end-stage CHF. Is this correct? Thanks for any info you can pass along. wd9dave@aol.com


Jon's April 20 reply to Jan's April 20, 1999 - Hi Jan, Welcome to Jon's Place. The symptoms you describe are typical of end-stage CHF but also consider possible medicine interaction or reaction. It could cause the same symptoms. Jon.


Ben B, April 21, 1999 - Hi, I made a small mistake. Marc Silver's book is called "Success with Heart Failure," a little more optimistic title, depending on how you look at it.


Bill D's April 21 reply to Jan's April 20, 1999 - Hi Jan, If you'll give me a list of your father's medicines and their doses, I'll look up the side effects for you. I have a Mayo Clinic Pharmacist CD. If I see anything that's common to vomiting and loss of appetite, I'll tell you. You could ask his doctor about it and maybe get it changed. Bill. billdog@gate.net


Mary, April 21, 1999 - Hi, This is my first contact with you. What a great service! My Dad is 73 year old and was diagnosed with CHF in 1994. His ejection fraction is 11% and we know he's considered end-stage. The toughest thing for us 3 daughters is living 60-300 miles away and relying on Mom's reports of his status. Our current concern is that Mom says he is sleeping much more, recently. He apparently needs naps frequently and has no energy when awake. My question is: is this yet another sign of end-stage CHF or should we be concerned with things like multiple drugs and drug interactions? Anything you could share would be very helpful. Thanks. mabramowsk@aol.com


Jon's April 21 reply to Mary's April 21, 1999 - Hi Mary, Has he changed drugs or doses coinciding with his need for more sleep? Jon.


Sharon S, April 23, 1999 - Hi, This is the first time I have written. My husband was diagnosed with cardiomyopathy and left heart failure in January, with an EF of 33%. He had his gallbladder go septic last fall and then had an arterial blood clot in the groin. They did an echo at that time and his EF was 50%. In March of 1999, he had an angiogram which showed an EF of 15%. A subsequent echo a month later reported it as less than 20%. Needless to say, we are wondering what is happening and what to expect in the future. He is on several drugs and seems to be stabilized, but has atrial fibrillation and arrhythmia thrown in for good measure. We have basically been told that beyond the drug treatment, there is only transplant as an option but no mention of putting him on a list. It is hard to get firm information from the doctors. I have been reading this site ever since the diagnosis and have become much more knowledgable. Thank you to Jon and the many people who write in.
     I guess my biggest question is, so many of you have had your EF improve substantially, we are told they can't make anything improve, only try and stop further deterioration. Is our situation different because his heart damage is different than other people's? We have been told the heart muscle has lost its elasticity, hence it can't contract effectively. One doctor mentioned the front wall of the heart was damaged. Jon, I read of your EF improving from 13 to over 40. That certainly gives cause for hope! I would be very interested in hearing from others with opinions on this situation. Thanks again for having this site. It was a Godsend when looking to get factual information in every day language. Everyone can identify with that first panic when you get the diagnosis. The info provided here is invaluable. I read it almost every day. Sharon S. mlstrick@telusplanet.net


Susan B, April 23, 1999 - Hi, My dad is 72 and was diagnosed with CHF 2 years ago by his family physician, who prescribed Lanoxin and referred him to a cardiologist. The primary physician did no testing to find the cause of the CHF. My dad has never seen the cardiologist. He is afraid of hospitals and is certain that if he sees a specialist, he will be admitted to the hospital. He has been taking Lanoxin for the last 2 years and has done well until this past month. He is experiencing episodes of lightheadedness, shaking, sweating, difficulty breathing, and general discomfort. These episodes last anywhere from 5-20 minutes. Afterwards he is pale, exhausted, and just worn out. These episodes seem to be happening more frequently, at least 3 per week lately. He simply refuses to go see a doctor and we are frustrated. Does this sound like symptoms of CHF? Does it sound like he is having possibly "mild" heart attacks? I am worried and would appreciate any information from anyone. Thank you. SBecker980@aol.com


Mary's April 23 reply to Jon's April 21, 1999 - Hi, Only one, and only briefly. He's on Zoloft for depression and his doctor increased it from 50mg to 100mg, thinking this may be due to depression. That didn't seem to make a difference, though, so it's now back down again. No change in cardiac meds, though. Oximeter readings still in mid-90.


Marion M, April 23, 1999 - Hi to everyone, My husband is 58 and was diagnosed with CHF in 1995. He took a full disability retirement in July of 1998. I found this wonderful site about that time. We have had a strange setback in my husband's prognosis. The cardiologist sent us to a hemotologist to investigate why his blood cell counts were consistently dropping. After much testing and a bone marrow draw, they tell us he has pancytopenia and they can do nothing more. The doctors seemed very uncomfortable and reluctant to give us much concrete detail. What I can piece together is that the dropping red cell count is of most concern right now, as it will make his heart work harder and negatively impact his CHF. It seems as if there is a race to the finish on between the pancytopenia and the CHF. We are still trying to get an answer as to how long this race will last.
     We have begun to talk about the end time to come. As he gets weaker, we almost become more peaceful about all this. We made some final arrangements, for both of us, so that when the time comes, that detail will be covered. Now we are trying to decide how much to tell our children (girl 10 and boy 15). We don't want to alarm them too soon but we also don't want them to be blind-sided. They know their father is ill but they don't understand how serious it is. When and what do you tell your children? mimi5230@aol.com


Charlotte, April 23, 1999 - Hi, Has anyone had cardoversion done? I took my husband to the doctor's this morning and the meds he is on didn't improve his atrial fibrillation. They even called the doctor in who regulates his ICD and tried to adjust it to reverse his fluttering to no avail. Monday we go to the hospital at 8:30 as outpatient. They will do this procedure to try and get his heart beat and breathing back to normal. DunninTn@aol.com


Liz C, April 23, 1999 - Hi, This is my first post to this site although I have browsed for a few days. My Mom, who is 85 years old, was diagnosed with CHF about 15 years ago and has recently had a setback. My dad died of this disease 2 years ago at age 89. I am having a hard time dealing with this illness, although my Mom has a positive outlook and wants to do as much as she can. Over the past few months, her walking has become progressively worse. Often when she stands up, her legs wobble until she can get going. I asked the doctor about it but his only reply was that she had so many illnesses. She is going to start taking CoQ10. From what I have read, it can't hurt. What is a good dose to start with? The capsules I bought are 30mg. She takes Coumadin, Lasix, Captopril and metoprolol. She was also taking Norvasc and Isosorbide but the doctor cut those out. I think that so many meds were making her worse. She has good days and not so good days, which I guess is to be expected. I am having a harder time than she is in a way because it breaks my heart to see her becoming frail and tired. I feel better knowing there are others out here who understand. ecolaneri@aol.com


Virginia R's April 23 reply to Mary's April 21, 1999 - Hi Mary, I can relate to your situation where being long distance is concerned. My dad lives 240 miles away from me. You learn a lot of wonderful information here and that certainly helps when you are talking to nurses and doctors long distance. Try to get your parents to give written permission for you to communicate with the doctor's office directly. That has helped us. Sometimes, Dad gets a little confused with all the changes in medications so it has been beneficial to have that contact. As I mentioned in the last post, they increased his Lasix substantially, which is what his old family physician originally had him on. I'm relieved since he was using way too much zaroxolyn. They wrote all of his medicines and dosage schedules on a card, which is a lifesaver! This may sound so simple but at the other doctor's, we had to write the directions down ourselves and before you know it, we would become confused. The cardiologist met with me and stated that his greatest concern was that "someone felt that he was sick enough for a heart a decade ago but for whatever reason, little had been done for him since." He explained that he read over his records thoroughly over the weekend before his appointment last Monday, and believed that he had "no time to lose" in treating Dad. This is a simplified version of what the cardiologist told me but I'll try to do my best in case someone else can find some useful information.
     Normally, he would have done a right heart catheterization because there is damage on that side of the heart, too. We don't know when this occurred. He also has a blood clot on the left side of his heart. After he is able to determine what kind of damage is there, he will have a greater understanding of which medication to use to treat Dad. He will then use these medicines and adjust them in the hospital, fine tuning, so to speak (infusion therapy). He feels there is no time to loseand wants to begin adjusting some meds now. He stated that on Monday the 26th, he will titrate the Prinivil in the office, doubling the dosage. They will do this while he is connected to some equipment that will give a reading on exactly what the effect is on his heart. A heart cath will be rescheduled but the doctor stated that he will be out of town for a few days and that he wants to handle dad's care directly while he is in the hospital and does not want to miss a day.
     Meanwhile, Dad has a horrible horrible cough that is only getting worse. Also, I don't believe I mentioned it but the doctor has state of the art equipment in his clinic which can determine oxygen level to the heart. I feel fortunate we have found this physician. I hope Monday gets here quickly for my dad, as he seems so uncomfortable right now.
     Dina, you hang in there! E-mail me anytime. By the way, some of you may remember Michelle (mabram@bellsouth), whose father was on the transplant list in December. She has been supporting my dad but wanted y'all to know that her father had a transplant and is now doing very well. She asked me via dad's e-mail to let all of you know that she appreciates the prayers and supports, as do I. giniroberts@hotmail.com


Jan, April 23, 1999 - Hi, My father had congestive heart failure 4 weeks ago. He was on a ventilator for 1½ weeks. He made it through and is off ventilator but has not been back on his feet since March 22. His mind comes and goes. Please let me hear from any of you who have loved ones with this condition. atkins@tilc.com


Ronnie C, April 23, 1999 - Hey there everyone, This is my first time here. My dad was diagnosed with CHF about a month and a half ago. He complained about loss of breath when he was asleep and would wake up and think he was having an anxiety attack since his job was stressful. So he went to the doctor. When the doctor saw his heart, he said get to the hospital now because he had an enlarged heart. We were in the the hospital room when the heart doctor came in and explained to him that he had CHF. Wow, what do we do and whats the next step? I mean, we were shocked. The doctor told us that his heart was pumping at 20% and was in need of a heart transplant but he could go home in a couple of days after they monitored his heart overnight for a couple of nights. The doctor gave him about 9 kinds of medicine and put him in a rehab center where he works out 3 times a week.
     Meanwhile, he would take his medicine, get sick, complaining about stomach cramps, vomiting and dizziness. Some days would be not as bad. After working out about a month, the doctor would moniter his heart. At first, he couldn't go through the whole workout. The next couple of weeks he was going through the whole workout pretty good so the doctor checked his heart again and was amazed! The doctor came in his office to talk to my dad and told him he didn't need a transplant and that his heart was slowly improving. We never prayed so much in our lives. We couldn't believe it. Dad still has his good days and bad days because of all the medication but I know one thing, every night when I go to bed, I thank God for shining some light on us and my dad. To all who read this, have hope, love, family togetherness and drive! Take your medicine, eat right, drink sodium free water and stay active.
     My dad one day didn't have a rehab class and was complaining about feeling sick again so he told the doctor and the doctor asked him, "Did you do any kind of exercise?" He said no and the doctor told him, "You have to do some bicycle riding. Walking is even better. Don't let the medicine do all the work, you have to help it." So work your heart. Don't let it get to you, be strong. Put a little love and caring in there, and have faith in God and everything will be alright. Ronnie. rhonda.chavez@gte.net


Jon's April 23 reply to Sharon S' April 23, 1999 - Hi Sharon, Welcome to Jon's Place. From reading about me, you probably realize that although my EF went way up, it has made no difference whatsoever in the way I feel, or in my oxygen use testing. Numbers are not everything and good numbers are no guarantee of a good result. My own cardiologist is adamant about the fact that how I feel is the best indicator of my prognosis. Concentrate on how he feels. EF numbers fluctuate for many reasons and echo results are only +/-8% accurate, depending on the tech, equipment, patient weight, and other factors.
     A-fib increases stroke risk so be sure his doctor is either working on controlling the a-fib or is keeping your dad on blood thinners to prevent blood from pooling and clotting inside his heart. Also, do you know what type arrhythmia he has? It could be no risk at all or it could be potentially lethal, depending on the type. Check into it. Finally, don't be a stranger. Jon.


Jon's April 23 reply to Susan B's April 23, 1999 - Hi Susan, Welcome. There just is no way to tell about your dad. I suppose the real question is, why is he so afraid to go in the hospital? Certainly he has some basis for his fear, whether it is realistic or not. Wiggle it out of him and work on helping him cope with it. Please work fast though, since his symptoms could be anything but they don't sound promising. If possible, get him to post here. Maybe you could even get him to talk to a cardiologist on the phone. Talk to the receptionist or nurse and explain about your dad's reluctance to go to a clinic, and see if a cardiologist won't return your call and talk to your dad. It might help. Jon.


Jon's April 23 reply to Marion M's April 23, 1999 - Hi Marion, My daughter was 12 when I was diagnosed. We "sort of" told her about me. She knew it was serious from seeing me in the hospital after diagnosis and me not going back to work, but after awhile, and I'm not sure how long, she flat out told us she wanted the full report, now and forever after. She took in all that we told her, and dealt with it her way, whatever that was. Try and get private info from a near-teen! <G> She seems to have coped well and never seems to regret her decision to hear it all, straight and blunt. This may not work well with any other child. All parents know each child reacts differently, but it's one experience and I hope many others will tell you their experience, so you have some ideas, at least. I also know my situation is different now, but remember that I was not expected to live very long when diagnosed, so the problem of informing our daughter was very real. Go with God, Jon.


Jon's April 23 reply to Liz C's April 23, 1999 - Hi Liz, Welcome. I think that 30mg is a very good starting dose for CoQ10. It can be increased after a few days at whatever rate you are comfortable with. Always take it with food, preferably something with a bit of fat in it. If you use tablets, chew them with food. I strongly recommend ordering it online since it is so expensive. You can save quite a tidy sum that way. It is difficult to watch a parent deteriorate. My dad died of cancer and it was tough watching him get weaker and sicker. Our prayers are with you and we wish you much time to be with your mom now, more than anything. It really counts for a lot, to you and to her. Jon.


Robin, April 25, 1999 - Hi, I was so happy to find this board, I think I forgot to thank everyone who so willingly helps us help our CHF loved one, so thanks! Things seem to be stabilized with my Dad. He has been out of the hospital for 5 weeks now and we see slight improvement each day. Yesterday, Mom was so happy to tell me that Dad said it was such a beautiful day he was going to walk across the road to visit the neighbor. When she asked if he wanted her to go with him, he said, "No, I'll be alright." As you know, there are good days and bad days. I would like to know what could be causing him to have vision problems. He says he'll see spots and his eyes are real sensitive to bright light?


Ben B's April 25 reply to Sharon's April 23, 1999 - Hi, Except for the 50% reading, all of the readings seem to be within tolerance. Since your husband was just diagnosed, it is probably best to wait for the meds to take effect. Three measurements in the first few months probably don't indicate much other than normal fluctuations. Although everybody has a different level of heart muscle damage, I think it is safe to say that most of us have inefficient pumps and the reason EF goes up is because of the reduction in load on the heart, rather than real improvement on the heart muscle. My hope is that this can allow us to live longer and better and maybe meds or procedures will come along in the future to actually help out the ailing heart.


Bill D's April 25 reply to Charlotte's April 23, 1999 - Hi Charlotte, The good news about cardioversion is that it only takes a minute and is painless. The bad news is that it doesn't always work. I had it done to me and it worked. They put a paddle behind your back and another on your chest. Then they put you to sleep for a minute or two so you don't feel the shock. When I was done, I had a little sunburn mark on my chest. Good luck! Bill. billdog@gate.net


Bill D's April 25 reply to Virginia R's April 23, 1999 - Hi Virginia, You might ask the doctor if the Prinivil might be causing him to cough. Some of us do with ACE inhibitors. They have ACE 2 Inhibitors that might clear it up. If he's not coughing when he sees the doctor, he should tell him about it. Bill. billdog@gate.net


Bill D's April 25 reply to Jan's April 23, 1999 - Hi Jan, You didn't tell us how old your father is. CHF isn't a disease. It's only the symptoms of a host of diseases that affect the heart's ability to pump oxygen-rich blood to all the cells that need it. Did your dad have a stroke? Did he have a heart attack? I think it's a good sign that his mind can work sometimes. Does he recognize you? Can he speak? They would be signs that his brain isn't permanently damaged. Bill. billdog@gate.net


Bill D's April 25 reply to Ronnie C's April 23, 1999 - Hi Ronnie, Welcome to Jon's Place. This is the best place to answer all the questions that your dad's doctors don't have time to answer. Go to the top of this page and click on the words: "Site Index." You should start by reading "The Manual." You might print it out for your parents. Then start burrowing into all the information Jon has collected on CHF, the diseases that cause it and what your dad can do about it. Then please come back and talk to us. Bill. billdog@gate.net


Annie G, April 25, 1999 - Hi, Are there usually any restrictions on flying? Are there places that are more in touch to the special dietary needs of sodium restrictions? So far it has been my experience that the resaurant servers we spoke to don't really get it. You make all these specific requests, explaining some of the places that they may not expect to find sodium and have them talk to the chef. Then they bring you a plate with a pickle on it! I thought about making up a short pamphlet and sending it to a restaurant about a week before going, to see if that would help. Anybody else have any good ideas? Thanks, Steven. steven.harold@sympatico.ca


Jon's April 25 reply to Annie G's April 25, 1999 - Hiya, You know, you have a good idea there! Be sure to include on the pamphlet in a prominent place that this is not just a cosmetic dietary restriction. Sodium can kill a CHFer. It's true in a very real way. A large helping of sodium can trigger a CHF episode, which stresses the heart, and could be the last straw for one of us someday. Maybe that would help, showing them that this is serious business. If you do make up such a pamphlet and it's in a format I can use, send it my way and I'll check into making it widely available. Jon.


Kathy K, April 26, 1999 - Hi, This is my first time writing, though I have been reading this site for quite awhile. My mom, who is 84, was diagnosed with CHF over 20 years ago. This January, she had pneumonia and in February, she went into the hospital with about one fistful of available lung. After a 3 week hospital stay, the hospital suggested a nursing home for rehab but things are getting worse. She has lost over 30lbs. She only weighs 72lbs. She has no appetite except when her youngest grandson convinces her to take a little ice cream or applesauce. She has no strength to stand or even roll over in bed. She is on 3L/hour of oxygen and wants to sleep all the time. This has all been very frightening to all of us who had a fairly active mother just a few short months ago.
     I have a couple of questions. I believe that she is in the end stages of CHF. Does lack of oxygen cause her to forget from one minute to the next? She even forgets if her teeth are in or where they are. Do people just give up and refuse to eat? How long can she exist on pills and a little protein drink? No one at the nursing home or elsewhere seem to give us a straight answer. Your service is a Godsend. Many of my concerns have been answered. Do take care of yourself. KathKor@aol.com


Charlotte, April 26, 1999 - Hi, Today is the day we're dreading. My husband has to be at the hospital at 8:30 so they can put tubes and a camera down to his heart and hopefully get his heart back to a normal beat again. The Coumadin and another med didn't seem to work. Last Thursday they tried to adjust his ICD to see if that would make his heart go back in a normal rhythm but that didn't work either, so now this procedure. What else is left to do? He only has has a partial heart to begin with and you wonder how much more it can stand. DunninTN@aol.com


Jon's April 26 reply to Charlotte's April 26, 1999 - Hi Charlotte, I'm not sure what you mean about the Coumadin not working. It's a blood thinner and is given for a couple of weeks prior to cardioversion in most cases for safety. It prevents blood clots from being shaken loose during the cardioversion and causing a stroke. I didn't list the name of the other drug you mentioned because I wasn't sure which drug you meant. Have you copied the drug names off the prescription bottles and looked them up on Websites? There are drug sites listed at my Links page that will help you understand what each drug does and any problems it may cause. Hearts are tough - all the CHFers who are still around to post here are proof of that. <g> Many of us have only part of our heart working. Don't give up, whatever you do. Educate yourself about your husband's illness and its treatments. It will not only help you get him the best care but will make you feel more in control. Jon.


Charlotte's April 28 reply to Jon's April 26, 1999 - Hi, The medicine I spoke of that was not working was amiodarone, not Coumadin. We went today and they did the cardioversion. His 2 doctors came out afterward and informed me they got his heart back in a normal rhythm. He has to have his blood checked again on Thursday because of the adjusting they do on his Coumadin. His chest and back is a little red. My husband says it burns a little bit. He said the last thing he remembered was when the doctor said, "We're about to begin." Then, he was in dream land. I have to take him back to the doctor's office in 2 weeks and they will check him to make sure he's still in normal beat range. My husband had an ICD installed back in October of last year and today before they started working on him, a Medtronics' representative was in there checking with the 2 Doctors on the condition of my husband. I thought that was weird. Dunnin@aol.com


Karen P, April 28, 1999 - Hi, Has anyone ever heard of the Minnesota Living With Heart Failure Scale? Do you know where I could get a copy of it? Thanks for your help. Karen. phillik@televar.com


Jenny, April 28, 1999 - Hi all, My 90 year old mother has CHF. She has only one functioning kidney. Her doctor says she is at stage 4 of her illness. Does anyone know what stage 4 means? She is currently at home after a 2 week hospitalization. We are keeping her as comfortable as possible. She sleeps almost all the time and has no appetite. I would appreciate any input offered. Thank you. Jenny. Dansco@aol.com


Paul B's April 28 reply to Kathy K's April 26, 1999 - Hi Kathy, If I were you, I'd be finding someone who would at least let me in on the truth about my mother's condition, and that's your mom's doc and not someone on the staff at the nursing home. I'm not a doctor but after watching my father pass away from CHF six months ago, a lot of the symptoms you are describing are what Dad went through in the weeks prior to his death. He also had similar symptoms when he got out of the hospital 6 months prior. CHFers are prone to memory lapses at stages other than end stage, but if it's gotten significantly worse, it could be an indicator. What type of rehab is the nursing home doing with her? In my opinion, sometimes physical therapists push too hard. That may be why she's sleeping a lot. Does she know where she is? Does the fact she's in the nursing home depress her? That can affect appetite. Sometimes the mix of meds can screw up appetite. Has her doc checked her EF lately? How about her oxygen level? Three litres may not be enough. My prayers for you and your family. wwhc@miworld.net


Jodi's April 28 reply to Chrissy's April 18, 1999 - Hi Chrissy, I will check with my other support group on Atavan. I do know that what doctors may prescribe as nerve medications can help individuals overcome addiction problems. If that is the case here, it sounds like maybe your mother is trying to turn things around. I hope so. When a person overcomes an addition, their health usually improves markedly within 1-2 years. Anytime a doctor tells someone to quit something to save or extend their life and they continue to do it, whatever their explanation is, they are addicted.
     It is very difficult being the responsible one, the one who is depended upon, when our parent seems bent on making themselves sicker. You would think they would consider us and what we go through but they can't always do that. I know that in the case of my father - 58, single, stubborn, very independent, lives alone 100 miles away - he is so proud that he refuses to talk to my uncle anymore because my uncle did not buy him soda with caffeine in it, and that uncle is the one person who checked on him everyday and was available for emergencies. I've given up the begging and the manipulative suggestions. I've given up the idea of having any control over this. I told him that if he wants to kill himself, I'd buy the caffeine. He doesn't want to pay a housekeeper to come by twice a week, so he will live in filth. He finally quit smoking after 3 strokes and a heart attack. He refuses to move in with me, refuses assisted living, pushes away those who do care for him. I do check with his visiting nurse to make sure he's lucid, because as soon as he is no longer able to make his own decisions, then I can enforce my "Health Care Guardian" papers. Whew, I just had to get that out! You hang in there girl and keep me posted. I will pray for your mother and for you. God bless. Jodi. GrnEyes468@aol.com


Bobbi Z, April 28, 1999 - Hi, I've been peeking in for a couple of weeks. Does anyone have information about the right side of the heart in failure? My husband is 48 and I believe we are on the downhill slide. I believe we are in about our 4th year with this disease. His edema in his feet and ankles, and severe nausea seem to be in about a 2 week cycle. The doc says his liver is filling up with blood, then when he gets sick, he feels better for a while. He has extreme fatigue and can not do any physical activity. He cannot have a transplant because his lungs are in such bad shape. I guess I'm preparing myself for the end but if there is something I can do to make him more comfortable until then,... Thanks, Bobbi Z. bobbi@norcalis.net


Karen D, April 30, 1999 - Hi, I haven't posted in a while, but have been keeping up with everyone, and want to give you an update on my husband, Bill. He is scheduled to have arthroscopic surgery tomorrow afternoon on his left shoulder rotator cuff. Two years ago, before his CHF, he had the same surgery on the right shoulder and because he wasn't able to tolerate the pain medication and had also decided that it would be a perfect time to stop smoking, I remember that he was in agony! Since I had already stopped, we had no cigarettes in the house and when I felt so bad for him that I decided to go get some in the middle of the night, the car wouldn't start! Well, the next morning he decided it wasn't a good time to quit, although he did do it successfully one year ago. So things should be better this time. He'll have a different pain prescription but I'd still appreciate prayers for him.
     He's up to 25mg Coreg twice a day, along with Lasix, Zestril, Lanoxin and Lescol. He is able to walk a mile in about 25 minutes, although it totally wears him out. His EF is 12-15%. His cardiologist at Tampa's Transplant Center saw him Tuesday and is pleased with how well his medications have stabilized him but wasn't too happy about the surgery, although she did understand that he's been in constant pain and can't tolerate it any more. Unfortunately, the orthopedic surgeon said that since Bill's ICD is implanted below the left shoulder, some of the pain may be coming from that pocket and there is no way to know for sure until after the surgery is done. Thanks for keeping Bill in your prayers tomorrow. Karen. deitemey@kua.net


Meg, April 30, 1999 - Hi, My husband has had an arrhythmia problem for many years. We finally figured out that cold medications triggered attacks. By that time a third of his heart was scar tissue and a defibrillator had been implanted. His heart is now enlarged and weakened. To add a further complication, he has gotten pneumonia. The heart doctor has now said he has congestive heart failure. I am totally lost.
     They have had him in the hospital for 5 days now. The antibiotics cleared up his lungs but they took him off the heart meds and now his legs are swelling up again and the cough is back. Throughout it all, his stomach has been giving him trouble and he's not eating much. I sure don't want to second guess doctors but this just doesn't make any sense to me. He's 49 years old and he looks about 80 right now. He's also very angry because he has to change his job and restrict what was a very active lifestyle.
     So now I'm adjusting my lifestyle to encompass doing it all on the homefront to maintain some sense of normalcy, working full time, being my husband's vent for his anger, worrying about whether or not the doctors are doing the right things and trying to keep myself from worrying about the future. Oh, and keeping a happy face for my husband who does not need to be worrying about anything but his health, and for our son. Somebody tell me that self pity is okay now and then? I feel guilty whenever I permit myself to whine but my edges are starting to crack, like right now. I'm very glad I found this group. droim@aol.com


Jon2, April 30, 1999 - Hello people, My mom's anemia is being termed "Anemia of Chronic Disease" by her GP, after tests revealed no other apparent causes. There is lots of info on the Net about this. CHF is being mentioned as one of the precursers to this condition. You might want to keep an eye out for this condition affecting your family member. My mom is taking iron supplements now and seems to be doing ok. She just saw her cardiologist today. He is prescibing a diuretic called spironolactone for her. He says she has about 5 pounds of fluid in her and wants her to double her Lasix until it goes, then go back on her regular dose of 20mg and take spironolactone then, too. He will then evaluate her for Coreg when the fluid is gone. He said he would take her off Cordarone and start her on Coreg. However, mom also suffers from COPD from 50 years of smoking and I worry about the effect of Coreg on her lungs as I was told by another cardiologist that COPD and Coreg don't mix. Is there any info on this out here?
     Mom is on 3 litres per hour of oxygen but my sister, who is taking care of her, tells me the last few days have been her strongest in months. I'm also not sure why he would take her off Cordarone. I didn't realize that arrhythmia could go away even if she has shown no symptoms of it for a few months. Does anyone have any experience with someone stopping cordarone? It is a little frustrating getting your info second hand and not being able to question the doctors myself because I live so far away from Mom, so any experience out there is greatly appreciated. jonjensen@uniserve.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.

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