The paperwork never ends The Archives
Loved Ones - August, 2000 Archive Index CHFpatients.com

Jon 8-1     hellooooooo
 
Todd K 8-1     what's promising on the CHF horizon?
 
Jon's 8-1 reply to Todd K's 8-1     the CHF horizon
 
Pam Conley 8-1     questions about numbers vs how hubby feels
 
Jon's 8-1 reply to Pam Conley's 8-1     a start
 
Janet L's 8-1 reply to Jon's 8-1     update, doesn't seem quite right
 
Karen D's 8-1 reply to Jon's 8-1     update & more
 
Jon 8-1     thanks, everyone
 
Wendy 8-2     update on Mike, prayer request
 
Paul B's 8-2 reply to Jon's 8-1     was it my breath? <g>
 
Phyllis E 8-2     unloading a bit & a few questions
 
George 8-2     kidney function test questions
 
Jeanette's 8-3 reply to Phyllis E's 8-2     meds, stability & more 
 
Mary 8-5     hospice question
 
Gus R's 8-5 reply to Mary's 8-5     hospice care and info
 
Judy H's 8-7 reply to Mary's 8-5     hospice care and info
 
Holly H 8-7     am unhappy with my father's prior care
 
Jon's 8-7 reply to Holly H's 8-7     just a thought
 
Kathryn 8-7     question about caffeine & CHF
 
Linda's 8-8 reply to Kathryn's 8-7     accelerated heart rate
 
Gus R's 8-8 reply to Kathryn's 8-7     for what it's worth
 
Dega 8-8     night time symptoms questions & more
 
Jon's 8-8 reply to Dega's 8-8     for what it's worth
 
Jon 8-8     a topic for discussion by everybody
 
Karen P 8-9     merging message boards
 
Sylvia 8-9     can my mother exercise with CHF?
 
Jon's 8-9 reply to Sylvia's 8-9     exercise and CHF?
 
Anita S' 8-9 reply to Jon's 8-8     merging message boards
 
Jessica 8-9     questions - travel, a-fib, life span & more
 
Jon's 8-9 reply to Jessica's 8-9     places to start
 
Karen D's 8-9 reply to Karen P's 8-9     merging forums
 
Beverly C's 8-10 reply to Jon's 8-8     merging forums
 
Jessica's 8-10 reply to Jon's 8-8     getting the right doc & info, and more
 
Tara B 8-12     chemo and CHF questions
 
Sylvia 8-12     seek CHF doc in Pennsylvania/New York area
 
Paul B 8-13     merging message boards 
 
Jon's 8-13 reply to Paul B's 8-13     merging message boards
 
Michele 8-13     father's mental problems
 
Jon's 8-13 reply to Michele's 8-13     this is common after open heart surgery
 
Sherry 8-14     my mother's suffering, update & more
 
Bill D's 8-14 reply to Sherry's 8-14     your mom's suffering, need another doctor
 
Anita S 8-14     message boards & posting problem
 
Jon's 8-14 reply to Anita S' 8-14     posting problems with Netscape browsers
 
Sherry's 8-15 reply to Bill D's 8-14     thx, sleeping pills, doctors & more
 
Jon's 8-15 reply to Sherry's 8-15     doctors, posting via the forms
 
Becky 8-15     message board participation
 
Hedy K 8-15     potassium chloride salt sub questions
 
Jon's 8-15 reply to Hedy K's 8-15     potassium chloride salt substitute
 
Bill D's 8-16 reply to Sherry Z's 8-15     CHF specialists & more
 
Sherry Z's 8-16 reply to Jon's 8-15     specialists, dox credentials & more
 
Jon's 8-16 reply to Sherry Z's 8-16     dox credentials, CHFers' problems & more
 
Dega 8-16     aches & pains questions & more
 
Karen D's 8-17 reply to Hedy K's 8-15     salt substitutes
 
Diane 8-17     questions about Imdur & more
 
Mike 8-18     questions about mom's prognosis, meds & more
 
Pat C 8-18     thank you, update
 
Bill D's 8-18 reply to Diane's 8-17     Imdur, patches, angina & more
 
Jan Dye 8-19     heart pump reimbursement issues
 
Jon's 8-19 reply to Jan Dye's 8-19     heart pump reimbursement issues
 
Karen P 8-19     how do I protect assets in face of catastrophic expenses?
 
Melissa 8-19     update, reminder to not put things off
 
Paula 8-19     seeking parents of children with CHF & more
 
Hedy K's 8-21 reply to Karen D's 8-19     low sodium stuff, husbands cooking, & more
 
Jon's 8-21 reply to Hedy K's 8-21     low sodium tips, husbands
 
Diane's 8-21 reply to Bill D's 8-18     Imdur advice, spending time with loved ones
 
Becky's 8-21 reply Melissa's 8-19     condolences & more
 
Jamie 8-21     ups and downs already - how to cope?
 
Kathryn C's 8-21 reply to Hedy K's 8-21     finding low sodium foods
 
Karen D's 8-22 reply to Hedy K's 8-21     finding low sodium foods & more
 
Jeanette's 8-22 reply to Melissa's 8-19     condolences
 
Diane 8-22     fluid restriction questions
 
Jon's 8-22 reply to Diane's 8-22     fluid restriction
 
Chris 8-22     intro, itching, meds questions
 
Ruthie A 8-22     update on my mom and her putz doctor (Jon's term)
 
Jon's 8-22 reply to Ruthie A's 8-22     stuff
 
Hedy K 8-22     buying low sodium food
 
Janet L 8-22     seek wheelchair, golf cart experiences
 
Sherry 8-23     update, & night time itching
 
John S 8-23     thanks, update
 
Diane's 8-23 reply to Jon's 8-22     update, prognosis question
 
Janet L 8-24     heart flopping around sensation - questions
 
Janet 8-24     questions about spinal steroid injection for dad
 
Jon's 8-24 reply to Janet's 8-24     spinal steroid injections
 
Mary 8-24     my dad passed away
 
Bill D's 8-24 reply to Diane's 8-23     getting "well" & more
 
Bill D's 8-24 reply to Sherry's 8-23     long distance diagnosing
 
Gus R's 8-25 reply to Janet L's 8-24     funky heart rhythms
 
Jeanette's 8-25 reply to Mary's 8-24     sincere condolences
 
Diane's 8-25 reply to Bill D's 8-18     mom & her cooking
 
Janet 8-25     my son doesn't want a transplant & more
 
Jon's 8-25 reply to Janet's 8-25     heart transplant
 
Unknown 8-25     husband having seizure-like trance attacks
 
Bill D's 8-26 reply to Unknown's 8-25     "spells"
 
John Len's 8-28 reply to Jon's 8-13     heart surgery causing memory problems
 
Jeanette's 8-28 reply to Bill D's 8-26     questions about sleep studies
 
Jon's 8-28 reply to Jeanette's 8-28     sleep studies
 
Barb L S' 8-29 reply to Melissa's 8-19     thank you for sharing & more
 
Barb L S' 8-29 reply to Paula's 8-19     you are in my prayers
 
Bill D's 8-29 reply to Jeanette's 8-28     sleep studies
 
Barb L S' 8-29 reply to Sylvia's 8-12     a CHF doc suggestion
 
Jeanette 8-29     sleep studies
 
Janet L's 8-29 reply to Gus R's 8-25     thanks, update & more
 
Barb L S' 8-29 reply to Paula's 8-19     I hope this was all right with you
 
Barbara L's 8-20 reply to Jon's 8-15     doctors need to treat the whole person
 
Jon 8-30     caregivers' protection under the law
 
Carolyn 8-30     I could use some info & support right now
 
Michele 8-30     update on my mom, doctors & more
 
Barb L S 8-30     to Barbara & more


Jon, August 1, 2000 - Helloooooo, Is anyone out there? <g> Jon.


Todd K, August 1, 2000 - Hello Jon, What is or are the most promising new treatments for CHF that you see and how far off are we from something that will really help people with the disease lead a better, healthier life? Thank you. tkoenig@adsionline.com


Jon's August 1 reply to Todd K's August 1, 2000 - Whew, I'll try to give a short version. <g> When Bloomberg News interviewed me a couple of years ago, I said that implanted devices/mechanical support was going to be the wave of the future for CHF treatment and I'll have to stick with that today. There are still big problems: clots, comfort and expense, but I don't see any drug therapy even getting close to "curing" CHF. I also don't place as much stock in genetically targeted therapy as most people do. People are simply too individual. ;-)
     I also believe that medical researchers as a general community today have the patients' welfare less in mind, with funding and fame closer to their motivation than ever before. This means that many treatments aren't really based on much except the ability to get funding for the research and the chance to publish. I am seeing more flimsy and honestly, more useless studies than ever before. Did you know that a recent speaker at a prestigious medical convention said that 85% of medical information made available in the past 2 years was based on observational studies, cost-analyses and meta-analyses, rather than on clinical trials done in double-blinded and randomized fashion? Far more troubling to me was that she also said the fact that this is so makes such studies important. Do you see the problem? Luckily, we can count on the huge variety of options for CHF research to lead someone to something useful now and then. <g>
     Anyway, I'm putting my money on devices of several varieties. Of course, that's assuming the USA economy continues to be able to support ever-intensifying healthcare costs. I really don't mean to sound so cynical but I can only report what I see. Thank goodness for people like Gino, Marc Silver, Charlie Porter and others, who have an intense desire to heal, regardless of profit or lack of it. Jon.


Pam Conley, August 1, 2000 - Hi all, I haven't posted in awhile. Things have been going okay. My hubby, who got CHF approximately November of 1998, has been on all the right meds for about a year and a half. He still gets very tired and can hardly make it through a weekday of work but otherwise seems to be doing ok. He gets some SOB if he walks a lot. My question concerns something the doc said last week. He'd gone in for the results of his echo and the doc said it looked like his heart was healing itself. The echo looked normal and he could "go back to all his normal activities" but to keep taking the meds and come back in 6 months. I want to know why he'd say his heart is now normal if Rick still is tired all the time. The doc told him he could probably go off his meds in the future. Does this sound right? woo_conley@hotmail.com


Jon's August 1 reply to Pam Conley's August 1, 2000 - Hi Pam, First, is his doc a CHF specialist? This is critical. You can read about having higher numbers but not feeling any better here. Then come back and ask some more questions because it won't answer everything. It could be partly due to Rick's being really out of shape because CHF has held him back from vigorous exercise, but a lot of CHFers are seeing improved "numbers" from meds (especially beta-blockers) without a noticeable increase in their ability to function.
     About meds, no. Any CHFer - any - CHFer should stay on at least an ACE inhibitor even if heart function returns to normal. Several regulars here got "well" and were taken off all their meds only to drop back into CHF rather severely. My own CHF specialist says that even if all my numbers got completely normal, I would have to stay on at least an ACE inhibitor for life. Jon.


Janet L's August 1 reply to Jon's August 1, 2000 - Hi Jon, It has been pretty quiet on this board, hasn't it? I check and read both boards every day but haven't posted for some time. Dan is having a pretty rough time with the heat and humidity. I've seen the various messages on the CHFers' board about this. The last time we saw the cardiologist in June, he switched Dan to a 3-month follow-up. He also tried to tell Dan he is much better than he thinks he is, because he was able to handle 7 minutes on the treadmill about a year ago. Tonight Dan told me, with heavy breathing, sweating and dizziness, "I'm sure glad to know I'm better than I think I am because I sure don't feel very good."
     In December right after they did a cath and found that 2 of his 5 bypasses had failed, they talked like the need for a transplant was "months" to a "few years" away. In early June, the doc sounded like it might be many years away. This was with no change in EF (27%) so I'm not sure what made the difference. The only thing I can figure is that he is basing it on how Dan seemed to him that day. If that's the way to diagnose, then they should listen more to the patient and spouse's assessment because we experience it every day. Dan has given some thought to getting a second opinion but he's wondering if he would have to get all his records transferred, not even knowing whether he'd like the new cardiologist any better than the first. We haven't found any CHF specialist in the metro area but I think there is a clinic within a reasonable driving distance in Bloomington, Indiana, where Indiana University is. I need to do some more research on that. Anway, to answer your question, yes, there are people out here. dananjan@otherside.com


Karen D's August 1 reply to Jon's August 1, 2000 - Hi Jon, I'm still here but haven't posted in awhile for two reasons: Bill's been in pretty good health all things considered, lately and so I haven't posted any questions; and I haven't had any answers to some of the most recent posts, so I have been quiet. Living in hot, humid, central Florida, I've enjoyed the posts about bugs on the other side and was going to suggest boric acid but Rick M said it first, better, and funnier! Karen. bdeit@cfl.rr.com


Jon, August 1, 2000 - Hi everyone, Thanks to the people who e-mailed me also. I know life exists 'round here now. <g> Jon.


Wendy, August 2, 2000 - Hi Everyone, I haven't posted for awhile. My husband Mike is now off all Lyme medications and his arrhythmia has greatly improved. His last MUGA resulted in a very low EF and the doctor did not believe it was a true reading due to the arrhythmia. He has another one on the 16th of this month. We are keeping our fingers crossed and I'm "calling in the prayers!" I will keep you posted. God bless, Wendy. Pittfarm@aol.com


Paul B's August 2 reply to Jon's August 1, 2000 - Hi Jon, I couldn't help but notice that I was the last person to post before everyone seemed to go on hiatus. I can hear it now, "If he's back, I'm outta here." <g> Maybe I could start my own message board for "Not so loved ones!" If things continue to drag, I promise I'll come up with some cockeyed theory that will throw everyone into a tizzy! Best wishes. paul@traincountry.com


Phyllis E, August 2, 2000 - Hi, I haven't posted in a long while but do check in every day. I think it is so good to hear people taking care of themselves. Sometimes I want to scream, "Are you crazy?!" to my husband after he polishes off 2 hot dogs and a ½ gallon of ice cream. He smokes, drinks heavily and has gained back 70lbs. He feels his meds are taking care of it. I finally made a copy of The Manual, which he did read so he knows the facts. I am not his adviser. I think he is,..., what do I know what he thinks? Thanks for letting me unload a bit. Oh, he feels good! Two and a half years ago he was diagnosed with CHF, an EF of 15% and an enlarged heart. Do some people do that well on meds? I am just wondering how long he can last. Everything I read says not long. Thanks for listening, Phyllis E. PErnsberge@aol.com


George, August 2, 2000 - Hi, After having blood work, I was told that my kidney functions were up - no other explanation - but I was told to get more blood work in 2 weeks. Does anyone know what this means? pgsam@bellatlantic.net


Jeanette's August 3 reply to Phyllis E's August 2, 2000 - Hi Phyllis, I have CHF and DCM, an EF of 20%, and a very enlarged heart. I was diagnosed in July of 1998 and am on Coreg, zestril and Lasix. I can tell you, my meds work great. I have been stable for over 2 years now and am doing great. I am tired most of the time but that is the meds. My cardiologist even feels confident enough to see me every 6 months instead of every 4 months now. My EF has not changed since my diagnosis but it hasn't fallen either. So the meds work, but your husband has to watch what he eats too. I eat no salt and that helps out a lot considering I am on Lasix. I don't have a fluid restriction but still don't flood my body with liquids all day. I stop fluids around 8:00 PM every night. I hope this has helped you. Take care and God bless. I am praying for you and your husband. Jeanette. jeanette841@yahoo.com


Mary, August 5, 2000 - Hi, I previously wrote on 7/20 regarding my 77 year old dad, who has CHF. He has had a defibrillator since April of this year. He has gotten some appetite back and is doing a little bit better. His cardiologist recommended we call hospice as a support system to come in 1 or 2 mornings per week. Has anyone else heard of this? It sounds more like a visiting nurse situation where they can check his vitals, etc. My mom, my sister and I were all under the impression that hospice meant he did not have much longer but they explained that it is mostly for support. Any advice? cbenj95044@aol.com


Gus R's August 5 reply to Mary's August 5, 2000 - Hi Mary, I'm like you in that I thought Hospice was only for patients who had a short time to live and I think Hospice agrees with us. At www.americanhospice.org, it says, "The Federal Government arbitrarily restricts hospice care to those whose death is 6 months away, or sooner." They also say, "Most people who use hospice are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services and requires little, if any, out-of-pocket costs. This means that there are no financial burdens incurred by the family, in sharp contrast to the huge financial expenses at the end of life which are incurred when hospice is not used."
     With all of the above in mind, if I were you, I would contact Hospice. Since few of us expire when the dox predict, I would think the time frame for this would be rather loose and I'm sure they could soon tell you if they have a place in your father's care at this time. If they are able to help in your situation, I don't see what you could lose by using them. They are not going to hasten your father's death, they will just be another helping hand with his care. If they are not able to work with you at this time, they will surely be able to put you in contact with others who can. You mentioned a visiting nurse and depending on where you are, there may be many other sources of help, and I'd expect Hospice to know about all of them. Best wishes, Gus R. gus13@net66.com


Judy H's August 7 reply to Mary's August 5, 2000 - Hi Mary, From what I understand, our local hospice organization has 2 levels of service. One is to help terminally ill patients for whom there is no chance of recovery; the other is to help those with life-threatening illnesses (such as CHF) who are still aggressively seeking treatment for their disease. This was outlined in a brochure I picked up in our PCP's office. Judy. jmh@bright.com


Holly H, August 7, 2000 - Hi, My Father had CHF and also had sleep apnea. The doctor put him on a machine that also had water, which was put into his lungs for the machine to work for the apnea. After he went on the machine, he died 6 months later. I have been angry and frustrated at the doctor as all I hear about CHF is the restriction of fluids. I know sleep apnea is bad but putting fluids into the lungs of a patient with CHF is not right. hollyhughes@bankofamerica.com


Jon's August 7 reply to Holly H's August 7, 2000 - Hi Holly, I'm not a doctor and I don't know the specifics of the apnea treatment you describe, so my comments will be next to useless. With that said, if his apnea was a major contributing factor to his CHF or even caused his CHF (it happens), fixing the cause would be as important as treating the symptoms. Jon.


Kathryn, August 7, 2000 - Hi, I have a question about caffeine and CHF. My son was told to eliminate all caffeine. We were at an outdoor concert over the weekend. It was very warm (80°+) and we were sitting in the sun. I went to get an iced beverage and mistakenly brought back Tazo tea that contained caffeine. About an hour later my son's heart rate got very accelerated. I'm not sure how fast. We had to go to the first aid tent and he lay down for about 15 minutes. Then he was a lot better and the rapid heart beat didn't return. Do you think this reaction was caused by the caffeine, or was it the heat or a combination of both? We have another outdoor concert we are going to this weekend but it is later in the day, so the sun will not be as intense and perhaps not as hot either. This is first time he has had any caffeine since being diagnosed with CHF. I feel just awful that it was me who gave it to him. Thanks, Kathryn. Kathryncole@hotmail.com


Linda's August 8 reply to Kathryn's August 7, 2000 - Hi Kathryn, I'm not sure about the tea and the heat but a couple of things I learned that are no-nos are hot tubs and saunas, nothing above body temp or I can pass out. Also, some novacaines at the dentist's have adrenaline in them which can raise heart rate. My dentist gives me one without adrenaline. Also, make sure he doesn't need to give you an antibiotic for dental work. Linda. lmessia@home.com


Gus R's August 8 reply to Kathryn's August 7, 2000 - Hi Kathryn, We all have different reactions to specific things. With me, what seems like a good or bad thing to do (or not do) seems to change from day to day. With that said, either the hot sun or the caffeine might give me symptoms like your son's and the two together would almost make it a certainty. Finally, don't beat yourself up over it. We all make mistakes and the caffeine might not have been the cause anyway. With me, a reaction to caffeine usually doesn't go away that quickly. Best wishes, Gus R. gus13@net66.com


Dega, August 8, 2000 - Hi, Does anyone have any idea why a heart patient would start having problems breathing at night, even to the point of staying up and being restless all through the night? This is happening to my husband now every night for the last week. The constant pain and burning in his back and chest area, with numbness in the arm and also pain and numbness in the armpit. He has seen his cardioligist lately and everything seems to be going smoothly with his lungs and heart beat. I wish we had some answers. The Coreg seems to have worked for him. He goes longer during the day but still has all the pains and weakness he always had before. Thanks for listening, Dega. starmom1@hotmail.com


Jon's August 8 reply to Dega's August 8, 2000 - Hi Dega, I'm not a doctor; but if I had some of those symptoms and my cardiologist said I was okay, I'd be moving very quickly to a second opinion. Just my 2¢ worth. Jon.


Jon, August 8, 2000 - Hi everyone, I'm throwing this one out for discussion. If you want to comment but not openly, feel free to send me your thoughts by e-mail. I keep e-mail confidential. I am considering going back to the format I started out with on The Beat Goes On - namely, one message board for everyone - CHFers and caregivers and loved ones alike. What do you think? Advantages? Drawbacks? Jon.


Karen P's August 9 reply to Jon's August 8, 2000 - Hi Jon, I support your merging the boards. As the spouse of a man with heart failure and kidney failure, I often think of things to post (ask) and feel obligated to post on the caregivers' side but know that few will view my post and I am not likely to get an answer. I think this would be very beneficial to caregivers and quite enlightening to the CHFers as well. That's my vote, Karen P. PhillipsK00@cs.com


Sylvia, August 9, 2000 - Hi, Can anyone help me find information on exercise and CHF? My 76 year old mother has CHF. She was an active hiker and cross-country skier until about 5 years ago. Until this past year, she was still getting out for walks of up to 3 miles. Now her doctor has pretty much said that she can't exercise with this condition. She is getting very depressed about this and I need to learn more. I would think there would be a way for her to get some sort of exercise and work up in small increments to doing more but I don't know. sgrisez@hotmail.com


Jon's August 9 reply to Sylvia's August 9, 2000 - Hi Sylvia, As long as her CHF is fairly well compensated, she should exercise! It's very important to do it right but it is critical to exercise. Does she see a CHF specialist? Jon.


Anita S' August 9 reply to Jon's August 8, 2000 - Hi Jon, I like the idea of merging the two boards. It will make it quicker to read both of them. Sometimes I wonder which side I should post on when I've read something on the CHFers' side that I want to comment on. Do whatever is easier for you, Anita. dreamersil@aol.com


Jessica, August 9, 2000 - Hi, My dad was diagnosed with CHF years ago but never really told any of us. Or if he did, he didn't go into it very deeply. Then in January of this year (he's 63 years old), he went to the emergency room with severe edema, and rapid and irregular heart rate. He was always way overweight and a heavy smoker and the doctors seemed to think he was not going to make it. They said his EF was 10% and that his kidneys looked "bad." They said they don't know what brought this on. Then all of a sudden he seemed to get better, he lost all the water (about 30lbs!) and began to feel stronger.
     Out of the hospital, he immediately went on a low salt, low fluid, low fat diet, stopped smoking and began sorting through doctors. He finally found a real heart failure specialist. His medications are right on from what I can tell, he is now staying in sinus rhythm for days at a time, his EF is 29% and climbing. He lost about 70 lbs and seems to be doing well. However, he came to visit me by plane a few weeks ago and about halfway into the trip he developed pneumonia and almost died. They gave him dopamine and his BP dropped very rapidly, although I'm not certain what exactly caused it to be so serious. He is fine now but is depressed because he felt so good and loves to travel, and feels that it's a risk now. He feels that he is limited severely by his health.

  1. Does anyone have any travel advice for CHFers, incidents to relate?
  2. Does anyone know about the commonality of pneumonia in CHFers?
  3. Does anyone know where I can read more about the different types of CHF and what causes it?
  4. Where can I get more info on a-fib (what the effects are)?
  5. Will anyone ever be able to tell us his life expectancy? How can we judge that for ourselves?

Thanks for this site. ;-) Jessica. jessicab@cnet.com


Jon's August 9 reply to Jessica's August 9, 2000 - Hi Jessica, Welcome to Jon's Place. Have you read through The Manual? A good place to start on the other info is the Links page. Hopefully, some people will post their experiences in these areas as well. Jon.


Karen D's August 9 reply to Karen P's August 9, 2000 - Hi Karen, I e-mailed Jon that I read both forums and that he should do whatever is easiest and best for him. In response to Gus' post on the other side and to reassure Jon, I have never felt that we were second-class citizens of this forum. I think there are many CHF'ers like Gus, Bill Drummond, Jon, and others who read both "sides" and do respond when they have an answer for us. Karen D. bdeit@cfl.rr.com


Beverly C's August 9 reply to Jon's August 8, 2000 - Hi Jon, I think that both CHFers and caregivers would benefit from being on the same page. Good luck to all! macmember@earthlink.net


Jessica's August 10 reply to Jon's August 9, 2000 - Hi Jon, Oh yes, I have definitely read The Manual. In fact, I printed it out for my dad when he was in the hospital in January, which was great because he didn't really understand what had happened to him. I also took your recommendation and read Mark Silver's book, and sent copies to my dad and other family members. That really helped us figure out what was going on. Now, if you can believe it, my dad is a patient of Dr. Silver's - after dealing with a bunch of really bad, uncommunicative, pretentious cardiologists. What luck! Dr. Silver spent 3½ hours with my parents on my dad's first visit. Thanks for all the great advice here. jessicab@cnet.com


Tara, August 12, 2000 - Dear Jon, My grandmother was diagnosed with multiple sites of cancer about 3 months ago and has been receiving chemotherapy for the last 6 weeks. Just yesterday she was diagnosed with the beginning of CHF. Do you think the chemo brought this on? Do you think that if she continues with the chemo it will speed up the process of the CHF? It seems like a Catch 22. What are your thoughts? Tara B. mnebgs@aol.com


Sylvia, August 12, 2000 - Hi, Does anyone know of a good heart failure specialist that I could recommend to my mother? We need a doctor in the northwestern Pennsylvania/southwestern New York area. Thank you, Sylvia. sgrisez@hotmail.com


Paul B, August 13, 2000 - Hi Jon, I would merge the boards on a trial basis and perhaps consider using threads. Although dealing with CHF is very much a personal issue, it's also a family and friends matter as well. Since we're all part of the "big picture," we might as well all be in the same hopper! Merging forums may be even more educational and inspirational. paul@traincountry.com


Jon's August 13 reply to Paul B's August 13, 2000 - Hi Paul, Good to hear from you. I'm afraid there can't be a trial basis on this one. That's one reason I am taking my time and hearing everyone out on the issues involved. I used to want threading but couldn't do it. Now I can do it but don't want it. <lol> So it goes. ;-) Jon.


Michele, August 13, 2000 - Hi, This is my first post. My 75 year old father was just diagnosed with CHF. He has had two previous bypasses and he is diabetic. My question is about his memory. Since he has been diagnosed, he is so forgetful and sometimes can't follow a conversation. They said in the hospital that his oxygen levels to his arteries were very low, but that was 2 weeks ago and he is still extremely forgetful. Is this a condition of CHF or is this another problem altogether? Thanks in advance. lucysydney@aol.com


Jon's August 13 reply to Michele's August 13, 2000 - Hi Michele, Mental problems, especially with memory and learning new things, are common for many patients after any type of open-heart surgery. You can read more about it here and in the following several articles. It gets better in most people with time, but how much better depends entirely on the individual. Jon.


Sherry, August 14, 2000 - Hi Jon and everyone else, Two weeks ago my mother was rushed to the emergency room with a fever of 103° and was totally nonresponsive. This had to be the scariest emergency room rush I have ever been through. I am used to rushing her in with a CHF episode but this was very, very different. It turned out that she had a bad urinary infection that got into her blood, so she was septic. They started her on IV antibiotics and witheld her Lasix for almost a week. She did improve as far as the infection but as expected, she started to accumulate fluid in her lungs or around her lungs. I had to sign yet another DNR but knew she would make it home again and she did.
     My poor mother suffers so much but at least she is home. She cannot sleep at all these days. The doctor doesn't want to give her Restoril, which I have read about here, because she is 75 and he says that he doesn't like to give that to older patients. She takes Ambien from time to time but it doesn't really help. My dad was hospitalized about a month ago for 2 weeks in the psych ward of the hospital. He totally collapsed from being the caretaker of my mother for so many years. He is a bit better but now cannot be left alone himself because he has balance problems and keeps falling. Just when I think things cannot get worse, they do.
     I am so over-tired and exhausted myself but I have to keep going to help them. Sometimes I accept things as they are but other times I just cannot believe how much my mother suffers. I mean I do not think there is one day in the past few years that she has not suffered. Thank you for letting me get this out. It helps knowing that even though I don't know you all, you do understand me. She has been in end-stage CHF for so long now and I guess it is just going to keep going downhill until she passes. By the way, I think merging the boards is a good idea. I read both of the sides all the time anyway so whatever is better for you, Jon. God bless all of you. Thanks, Sherry. szauderer@milbank.com


Bill D's August 14 reply to Sherry's August 14, 2000 - Hi Sherry, Your mother is suffering because her doctor refuses to give her the medicines she needs. You wrote 2 weeks ago that her doctor only gives her Tylenol for pain. Jon said - and I agree - that she should have morphine. It helps us CHFers. Now you tell us he won't give her Restoril so she can sleep! What kind a sadist is he? Please get her another doctor! I've been taking Restoril for 12 years and I'm 70. Bill D. billdog@gate.net


Anita S, August 14, 2000 - Hi Jon, I was reading your post about having to access The Archives more often if you merged the boards, and now I'm not so sure it would be a good idea to merge. My husband goes days without reading the posts sometimes and I'm sure that it would wear him out to have to keep going back to The Archives to read a post. I read every day so it doesn't matter to me. I think that it should be up to you CHFers whether you merge or not, since you guys and gals are the reason for the board to start with. I'm glad I don't have to make that decision! Also, for some reason I can't send any posts to you from Netscape, but I can from AOL on Netscape. I can't figure out why yet. Do you have any idea what it could be? dreamersila@netscape.net


Jon's August 14 reply to Anita S' August 14, 2000 - Hi Anita, Yep, I have an idea that I'm clueless! <g> With help from Pat L, Mike J and Gus R (especially Gus!), I have been working on this for a week now. Apparently, Netscape 2.02 and older work, and Netscape 4.7x and newer work but not the version 4s in between. My web host has set up a duplicate test page and is checking into tweaking the script, while I am working with HTML authors to spot any problems on my end. Hopefully, we'll get it licked soon. On the other hand, Netscape simply doesn't support a lot of web standards and that makes it tough to figure out. Bear with us! Jon.


Sherry's August 15 reply to Bill D's August 14, 2000 - Hi Bill, Thank you for responding to my message. As far as the morphine, when I asked him about it, he said definitely no. He said that in someone in my mother's condition, it could stop her heart and is too risky. I will ask him again about the Restoril, but I didn't mention that my mother is pretty confused a lot of the time (not always though) and the doctor said that he doesn't like to give that to patients in her condition. He gave us Ambien, which does nothing. I will ask him again about the Restoril; maybe a low dose would help and not make her too out of it.
     As far as another doctor, the doc she sees has been her doctor for about 15 years and is a wonderful doctor and a wonderful human being. He also happens to be the chief of Interventional Cardiology at Columbia Presbyterian hospital, which is one of the best in New York City, and in the country. He goes above and beyond the call of duty and I may have written in the past when I have been frustrated with him but I really love him and so does mom. On his suggestion though, I do have an appointment with the heart failure specialists at the same hospital this Monday. Her regular doctor, although he is not a heart failure specialist officially, definitely handles cases like my mother's as well. I am very curious to see what the heart failure specialist will say, although I am not in denial that there will be some kind of miracle drug for her.
     I understand where you are coming from but he really is a good guy and definitely not a sadist. I appreciate your thoughts though and I think I may actually take a copy of your post and show it to him and see what he says! God bless, Sherry. szauderer@milbank.com


Jon's August 15 reply to Sherry's August 14, 2000 - Hi Sherry, I think you'll find that no one here really attaches a lot of importance to a doctor's credentials. Well-credentialed doctors make mistakes and forget that we are real people with real lives the same as the guy who finished last in his class at medical school. I am not saying this is the case with the doctor your mom sees; I am just explaining that credentials mean almost nothing when your life and well-being are on the line. Results are what counts. Understanding all aspects of a patient's life, including the mental and emotional stress caused by lack of sleep, constant difficulty breathing and chronic pain are as important as the CHF treatment!
     A doctor's abilty to see the need for that relief from lack of sleep and from pain and struggle really is critical. I go into this on my CHF specialist page. I suffer from extreme sleep deprivation at times and I know that doctors do not understand it. Often they dismiss it as a much lighter issue than it is. It can ruin a person's entire life yet they say that anything stronger isn't good for us. That doesn't cut it with me when I've gone 3 days without sleep, believe me. I had a CHF specialist say to me once, "Why don't you just go to bed earlier?" knowing full well that I had been suffering from insomnia for years. Like I never thought to try that! Dummy! Your mom's doctor may not "get it," regardless of how good a guy he is. A doctor is only as good as the results he gets today.
     As you can tell, I have strong feelings about the need for a doctor to empathize with a patient's overall life rather than just his heart failure. I have struggled with chronic pain and insomnia ever since getting CHF 5 years ago and I still haven't found a doctor who takes me seriously when I tell him how debilitating it is. Being a "good guy" is not enough. Being a skilled heart failure doctor is not enough. They need to remember that we are real people, with real pain, real struggle, real lives and real needs for effective and aggressive treatment for our overall well-being, not just our "heart function." I haven't slept in 24 hours now, and it's probably starting to show on this topic, huh? ;-)
     To everyone, hopefully, the form will work for everyone now. If you have any problems with it at all, please e-mail me immediately. Jon.


Becky, August 15, 2000 - Oops, I just realized that I sent my post from the wrong site. I agree with Karen D that I've never felt less important than those with CHF. When I've posted in the past, I've had responses from CHFers and caregivers both. Again, like Paul said recently, we're all part of the big picture. It's the CHF that brings us all here. RebeccaG99@aol.com


Hedy K, August 15, 2000 - Hi, I am the wife of Walter K, who has been posting on the CHF side of this site. Now I'll put my 2¢ in. Recently I bought Adolph's salt substitute, which is pure potassium chloride. It tastes lot like salt (Walter doesn't quite agree), but he has started sprinkling it on his food. Yesterday I casually asked a nurse in our local cardiologist's office what they tink of using this condiment. She said that Walter should use it exremely sparingly, or not at all. The rationale is that the ACE inhibitor he is on tends to keep potassium in the system, and using Adolph's puts him at risk of taking too much potassium, which can be harmful. Has anyone had this same warning from their health care providers? Is it indeed something to worry about? Jon, if there is a risk with the use of Adolph's salt substitute, perhaps you might consider posting something about it on the main CHF page. hknoth@magpage.com


Jon's August 15 reply to Hedy K's August 15, 2000 - Hi Hedy, It's good to hear from you. Yes, my CHF doc stressed that I should stay away from salt substitutes of this kind. I might add that to The Manual first chance I get. Jon.


Bill D's August 16 reply to Sherry Z's August 15, 2000 - Hi Sherry, I'm glad he suggested taking your Mom to a CHF specialist. At least he knows enough to do that. "Interventional cardiology" says it all. It's like "invasive cardiology." Please tell us what the specialist has to say, paticularly about taking Restoril and drugs that makes her feel better. I wouldn't print out my post if I were you. He'll think you're doubting his abilities. <g> Bill D. billdog@gate.net


Sherry Z's August 16 reply to Jon's August 15, 2000 - Hi Jon, I didn't mean to list the doctors credentials in an obnoxious way and I am really sorry if it sounded like that. He is a great doctor but after reading your e-mail I think I do need to be more assertive with him in terms of her overall health; her sleep as well as heart failure issues. A few weeks ago I gave my mother tylenol with Codeine, Ambien, Ativan (not all together) and nothing worked. As I had written ealier, I am going to discuss this all on Friday with the new heart failure specialist that we are meeting. The home attendent said that she did not sleep again last night. I hope you get some needed sleep as well. Thanks for responding and again I apologize if I sounded obnoxious listing the doctors credentials. Best regards, Sherry. szauderer@milbank.com


Jon's August 16 reply to Sherry Z's August 16, 2000 - Hi Sherry, You didn't sound obnoxious and I certainly didn't take it that way. I was just explaining some of the reasons no one should rely on a doctor because his credentials sound impressive. It never even occurred to me that you were being in any way obnoxious or anything else. Re-read what I wrote and just note that I am trying to lay out what I consider important in a doctor, and that credentials aren't one of those things. That's all. I get really steamed when sleep problems and foot pain in CHFers are played down by docs. They don't have a clue how devastating these things can be to us. Jon.


Dega, August 16, 2000 - Hi Jon, Thank you for answering my posts when I come on here. I think it probably is a good idea to merge the forums together. It's a neater filing this way but all together is good too. I need to run something by you again. A few times my husband has experienced a feeling of extreme burning and achy feeling in his muscles, especially from his upper legs down into his ankles, and also on his shoulders and arms down to his wrists. Can you make anything of this? Could it be sodium-related due to water retention? He does have that and does take a pill when it gets bad but he swells every night and his body gets very warm. Thank you again, Dega. dega_3@yahoo.com


Karen D's August 17 reply to Hedy K's August 15, 2000 - Hi Hedy, My husband's doctors also have told him to be very careful about using salt substitutes like Adolphe's because of the danger of getting too much potassium. He has been using "Jane's Krazy Mixed-Up Seasonings Original Salt Blend," which has 270mg of sodium per ¼ tsp instead of the 590mg that regular salt has. I don't add any salt to the foods I cook and I try to buy low or no-salt products. This way Bill can sprinkle on a tiny little bit of "Jane's Seasoning" and not go over his limit. I found it on the same grocery aisle as regular salt. bdeit@cfl.rr.com


Diane, August 17, 2000 - Hi, My mother is 82 and was diagnosed with CHF about 2 months ago. We live in Australia. She is a woman who was never ill and this has frightened her a lot. She lives with me. She is on digoxin, Lasix and warfarin and I think another one which slows the heart beat down. Although she is very tired, she is coping well. However, at night she suffers from pain in her chest which the doctor says is angina. The cardiologist prescribed a patch for her to wear nightly called Imdur, which is a nitrate. She experienced very bad headaches after a few days so she went off it on her own and then felt very ill for several days. We were worried because he seemed to just take a few samples out of his drawer and said, "Here, try these." It seemed too casual somehow.
     We later learned that you have to go off these pills slowly with the doctor's guidance only. Her GP has prescribed Imdur in pill form now, which he says is a milder dose. She is frightened of taking them because they are habit forming. I know that she is elderly but life is sweet, isn't it? She is also worried that it might interact badly with her other pills. Has anybody had any experience with Imdur, used for angina pain? I would appreciate any advice you could give me. She has asked me what I would do and it is such a hard decision for me to make. The doctors seem so casual when you ask them. Thank you for listening. Diane. diane.d.smith@au.pwcglobal.com


Mike, August 18, 2000 - Hi, My 84 year old mother has just been diagnosed with CHF. Up until now she has been in good health and active. Now she is having difficulty breathing, is tired, and does not want to eat much. Doctors have prescribed an ACE inhibitor, digoxin, and warfarin. Is there something else she needs to improve? If not, will her health deteriorate? What is the prognosis for this condition? treas44@hotmail.com


Pat C, August 18, 2000 - Hi Jon, I just want to thank you for this site. Per your advice, I asked my husband's cardiologist for the name of a doctor in his group who specializes in CHF and now we are attending a CHF clinic with a doctor who specializes in it, and there are 5 wonderful nurses on call 24 hours a day to help if needed. We had our first appointment and it was very helpful. My husband has CHF with a 13% EF and leg edema. They looked over all his meds and made some changes, so we are hoping for improved quality of life. Thank you. patchuch@msn.com


Bill D's August 18 reply to Diane's August 17, 2000 - Hi Diane, Most of those "transdermal" patches are fine. Check to see if it delivers 0.4 mg/hr. Some folks can't use them for 24 hours a day, because they get headaches. She must have a break. I tear it off in the morning and take a 20mg pill of Isorbide Mono. Seven hours later I take a half pill and put a new patch on about 3:00 PM. Isorbide Mono is the same as Imdur. There's nothing "casual" about giving her samples. The salesman figures she'll keep taking it! <g> Tell your Mom there's no chance of addiction but she'll probably take them the rest of her life to keep angina at bay. If you'll read The Manual, you'll see we all take similar meds for CHF. Bill D. billdog@gate.net


Jan Dye, August 19, 2000 - Hi, I am wondering if there is anyone who has been bridged-to-transplant with a total artificial heart on this site. I need some information, especially on insurance issues. My husband had this done last year and I am now fighting with Medicare to cover it. It seems to me that it was medically necessary since he was within his last hours of life. My husband did not make it through because the catheter migrated into the artificial heart and stopped the blood flow to his brain. I have heard from others that Medicare has covered this procedure and that the main problem in this case is that he did not make it to transplant. Any help from anyone will be greatly appreciated. I have numerous medical bills and an outrageous attorney bill and have just appealed to an Admistrative Law Judge. I am waiting to hear when the ALJ will schedule the hearing. Thanks to anyone who can help, Jan. jd@pioneer-net.com


Jon's August 19 reply to Jan Dye's August 19, 2000 - Hi Jan, I am very sorry for your loss. I am also sorry to see you saddled with such problems at such a time. Maybe one problem is that actual artificial hearts (as opposed to LVADs) are experimental in the USA. Press HCFA to be specific about their reason for denial. Try going to all the places where people with heart pumps of all kinds may be. Try the WWW links at my ICDs page. Also, look up the companies that manufacture heart pumps of all kinds and contact them regarding reimbursement and necessity issues they are familiar with. Also, go to the legal forums on the web that deal with medical claims of all kinds. The message boards there tackle all type topics. If you can't find any of these things, let me know and I'll try to help. Jon.


Karen P, August 19, 2000 - Hello everyone and great good wishes, I have a non-medical question. My husband has DCM and CHF. His heart failure has progressed to include end-stage kidney failure. A last resort is to begin PD (peritoneal dialysis), almost certainly by sometime next month or at least the surgery would be scheduled then. I always thought his death would probably come with a sudden cardiac event. I don't know why, I just felt it. Now I can see the possibility of nursing home care with the kidney failure. Does anyone have any advice as to how to protect one's assets in advance should this become a reality? My first concern is his care of course. He is my priority, but I can't help but be concerned with our financial future and mine too. We are presently receiving his state retirement check, a short term (5 year) early retirement stipend, and SSD. I did just fill out the form for a power of attorney for the state retirement check only, but I don't know if that is for protection or just convenience. Thank you for any advice, Karen. PhillipsK00@cs.com


Melissa, August 19, 2000 - Hi folks, It's been quite awhile since I posted here about my father. I originally found this forum when doing some research on CHF in hopes of finding something helpful for my dad. My update now is the "rest of the story" for our family.
     My dad made the choice to see a specialist at the Cleveland Clinic for some tests to see if he would qualify for some of the tests on long term uses of the HeartMate or "LVAD." Right now those and other devices are used as a bridge to transplant for those who qualify for transplant, which my dad did not due to his age and other health problems.
     On August 8, he went to the Clinic for a right-side cath. A Swan-Ganz catheter was inserted for the leads for monitoring his heart and for giving him the IV meds. He had a great deal of fluid in his lungs, even though he had no classic signs of water retention. They used large doses of diuretics and a foley cath and he flushed over 3 liters of fluid. On Saturday the 12th he developed an infection in the catheter and got very agitated and pulled the Swan out. He also developed a urinary tract infection, and things went from bad to worse.
     On Monday, the decision was made to discontinue the IV meds after the news that he would "never be able to go home" without the IVs. He was told that he probably would not even survive the trip. He really was more ill than anyone knew, partly because he had kept his weight on and didn't look wasted in any way. His heart function was at about 12% when they admitted him. Going to a nursing home was out of the question for him as well.
     Anyway, the Cleveland Clinic has an inhouse hospice or palliative care unit, and he was moved there on Tuesday the 15th. He was kept comfortable on morphine and thorazine and lost his battle with CHF Wednesday evening at 11:20 PM. My mom, sister and myself were with him when he stepped peacefully into the presence of Jesus. For those of you dealing with ill loved ones, make sure you take the time to say those things that need to be said. We knew what the outcome would eventually be and we were able to take advantage of that. Since there was always the danger that he would die suddenly at home, we also took steps to talk to him and see him whenever we could.
     Don't miss your opportunities, and I wish you and yours all the best. There are new strides being made all the time in the treatment of CHF. The HeartMate, LVADs, the Companion Study; all are giving hope to those living with CHF. If your doctor doesn't know of these studies, find one who does. Ann Arbor Michigan and Pittsburgh are 2 cities involved in the Companion Study. bizz@neo.rr.com


Paula, August 19, 2000 - Hi everyone, I have a son named Anthony who will be 3 years old in November. He has dilated cardiomyopathy and CHF. His EF is 11% and he is on a heart transplant list. He currrently takes Coreg, Vasotec, digoxin, Lasix, iron, and a baby asprin. My problem with him is that he constantly get pneumonia and has to be hospitalized. Is this common for this to happen? I don't know of any children who have DCM or CHF. If anyone knows of any support chats, I would like to know about them. Thank you, Paula. bigmouth1021@aol.com


Hedy K's August 21 reply to Karen D's August 19, 2000 - Dear Karen, Thanks for your suggestion about Jane's Krazy Mixed Up Seasonings. Unfortunately the market where I normally shop does not carry it. I will have to scour other markets for it. Finding low salt products is very time consuming and frustrating. As everyone here knows, there are very few and one has to go to several stores to find them. My husband Walter only got put on the low salt regime a couple of months ago. It has been a learning experience for us, resulting in a change of lifestyle. We eat out a lot less, and no longer use convenience foods. We have a pantry full of canned goods we will no doubt give to a food drive. I told Walter he will have to learn to cook to give me a respite. He has hardly cooked anything since we were married many decades ago. He disputes that because he usually makes his own lunches. Perhaps I will write about his foray into cookery in another post. hknoth@magpage.com


Jon's August 21 reply to Hedy K's August 21, 2000 - Hiya Hedy, Oh most definitely, give us some of the scoop on Walter, so we can have some fun with him. ;-) Don't forget to talk to your grocery store managers! You can bet I do. We're on a first-name basis (Jon and Karl) and now that my daughter does the grocery shopping, they are too. Now my local grocery store carries all kinds of low sodium stuff. It's been a gradual process, but quoting numbers and necessities to him has done the trick. After all, I've shopped there since the day they opened. He knows what I spend there every week!
     Befriend the guys in the store too - the butcher, the deli shop person (you don't have to buy their goods but you can certainly chat with them each visit), the stockboys, the cashiers, the pharmacist, everyone. The better they know you, the better they listen to you. Do the same when you eat out. Frequent the same place over and over and talk to them. If you're a "regular" you get better service, and more personalized attention. Jon.


Diane's August 21 reply to Bill D's August 18, 2000 - Hi Bill, Thanks for your reply. I will pass it on to her. Funnily enough, I was in the chemist's (pharmacy to you) the other day and a man was getting a refill of Imdur. I asked him what he thought about them. He said he had experienced no problems with them either so I guess your comments and his will convince my Mum to take them now. She says she feels at night as if chest pains are "just round the corner, but not quite there!" I guess you have to suffer these things yourself to understand them.
     I would also like to say how sorry I was to read Melissa's note dated 19 August. I feel that every day at work I will get a call to say my Mum has passed away and so I empathise very much with Melissa. I am trying to spend as much time with her as I can and think that it is so important we spend quality time now with our loved ones. Regards, Di. diane.d.smith@au.pwcglobal.com


Becky's August 21 reply to Melissa's August 19, 2000 - Hi, I am so sorry for the loss of your father. Mine died with cancer 5 years ago. How kind of you to remind us all of how precious our "time to talk" with our loved ones is. My husband has CHF, with an EF of 15-20%. May God give you continued peace and comfort, Melissa. May He be with each of your family members. RebeccaG99@aol.com


Jamie, August 21, 2000 - Hi Jon, I just wanted to thank you for setting up this site. It has been extremely helpful to my family and me. My father was diagnosed with CHF last week, as a matter of fact. He's 65, in good shape, a diabetic and an ex-smoker. It was a really rough week though, because at one time the doctors were telling us his heart was too weak to do surgery. It looked like he had suffered a couple of small heart attacks and they were talking about angioplasty or stents. Then a day later they were telling us that they were going to control his symptoms with medication and that he had no restrictions on his activities!
     Needless to say, we're very happy about that but at the same time we're like, wait a minute, what's going on? He doesn't see a doctor for another week and a half or so and I guess I am just wondering if this is normal. One minute we felt like we had to say our goodbyes and the next we think he might be around for another 5-10 years! How does one handle the ups and downs? TheGroelsmaFamily@peoplepc.com


Kathryn C's August 21 reply to Hedy K's August 21, 2000 - Hi Hedy and Jon, We have found a wonderful store locally here in Portland, Oregon. It's a market called New Seasons. They specialize in organic foods and natural products. If we ask the butcher a day ahead, he will make up a 10 pound batch of sausage without salt or msg or any of the other yucky stuff CHFers can't have. They even package it up in links at 2 per package. Of course this isn't cheap but it is a wonderful treat to have some CHF-edible sausage links in the freeze when you just can't come up with anything that sounds good to eat. We have tried a chicken, lemon, herb sausage that is just marvelous. I'll bet if you make friends with your local butcher, they would do the same thing. In fact, these guys at our market are so customer-focused they even said they would allow us to bring in our own salt substitute and they will use that in the mixture. Keep on talking to folks, you just never know who will come through for you. Take care, Kathryn. Kathryncole@hotmail.com


Karen D's August 22 reply to Hedy K's August 21, 2000 - Dear Hedy, I don't know what supermarkets are in your area but here in Florida I've found that Publix has more low-salt or no-salt products than any other chain store. I'll be glad to put together a list of some name-brand items that you could ask your store manager about ordering, if you would like. Just send me an e-mail. Also, be careful about fresh meats. One of our stores carries only Hormel pork and Hormel injects their pork products with a saline solution, adding way too much sodium for a CHFer to be eating. You can also find low- and no-salt items at Pete's Healthy Heart Market at http://www.healthyheartmarket.com. Believe it or not, Bill does a lot of the cooking for us. He experiments with herbs and spices more than I do, and seems to really enjoy cooking when he feels good. Good luck with getting Walter to help. Maybe he'll find he enjoys it too. Karen D. bdeit@cfl.rr.com


Jeanette's August 22 reply to Melissa's August 19, 2000 - Hi, I want to express my sincerest condolences to you and your family. I know how hard it is to lose a parent. I pray that God will ease your pain and bless you with his warmth and love. I myself have DCM and will probably not outlive my own father. It is so very important to make sure you say everything you want said ahead of time if possible. Again, I am very sorry and will pray for you and your family in this time of loss. Good luck and God bless. Jeanette. jeanette841@yahoo.com


Diane, August 22, 2000 - Hi everybody, Could you help me with another question? Because my mother has to limit her fluid intake, doesn't this mean she is putting her kidneys at risk? How does she combat this? Is there anything she should be doing about it? I am trying to know this CHF thing as much as I can so I can suggest things to her or the doc. Thanks a lot, Diane. diane.d.smith@au.pwcglobal.com


Jon's August 22 reply to Diane's August 22, 2000 - Hi Diane, restricting fluid should not mean going into dehydration. The less blood volume her heart has to pump, the less real work it has to do. This lets her heart "rest" and that contributes to its improvement, hopefully. If she displays symptoms like extreme lightheadedness, especially upon standing, or if her fatigue increases quite a bit rather suddenly, she should be checked for dehydration by her doctor immediately; But only a few people will get dehydrated on 2 liters of water a day as long as they are not highly active or taking excessive diuretics. A good idea is to drink the whole 2 liters every day so her body gets accustomed to a steady intake daily. Still, some doctors do not believe in a fluid restriction for CHFers. It's not written in stone. Jon.


Chris, August 22, 2000 - Hi, I just found this site and am hopeful that so many people who have or love someone who has heart failure will be a resource for me too. My story in brief is that my mother has had heart failure since a silent heart attack a year ago. She had to have her tricuspid valve replaced, had one bypass and the septal wall repaired. The delayed treatment resulted in a hole in the wall between her ventricles. The surgeons did a fantastic job but they were amazed that she survived it all, including a minor stroke during the surgery.
     At first she seemed to do well, then her heart rate was dropping and a pacemaker was placed last October. Since then she hasn't seemed to get back her energy. She was allowed to go into cardiac rehab. My mom is 69 years old and has always been a fighter. Things continued to worsen and during a hospital stay, another echo was done. She has right ventricular failure but also severe leakage around the mechanical valve and her MVP has worsened so that valve is severely leaking too. Now it's a weekly battle to try to maintain her balance of fluid, salt and her ProTime (she is on Coumadin due to the mechanical valve).
     Here's a simple question I'd appreciate input on: Since all this began, my mom has had night time itching all over. I've looked up the meds and some do have itching as a side effect but none can be stopped or changed. Has anyone found any of the numerous cardiac meds caused itching? What did you do? As I read in several posts, lack of sleep can make a person feel much more miserable of course. I have talked to her cardiologist, who specializes in heart failure, and he doesn't believe it's the Coumadin so he wants us talk to her primary MD about it. Any ideas? Thank you so much, Chris. cjmize@aol.com


Ruthie A, August 22, 2000 - Hi, It has been a very long time since I posted anything about my mother and her battle with CHF. I suppose it is because I disagree with her doctor's methods of treatment, while not being able to convince her that he is slowly killing her. To add fuel to my already intense fire, I found out that mother has a severely torn rotator cuff in her left shoulder. This same doctor has been treating her for arthritis pain in that shoulder for a couple of years, but just recently referred her to an orthopedist to check out just how bad it was. The ortho doc diagnosed the torn muscle, saying that it has probably been tearing a tiny bit each day for at least the last year, if not longer! He also said that because the tear is so large and has gone untreated for so long, there is nothing - not even surgery - that can help her now. I am so mad I could spit. No wonder she is in so much pain!
     Today I find out she has fallen, spraining her right ankle and breaking that same left shoulder. The orthopaedist has booted and braced her and prescribed morphine for the pain. He is the only one that mother will allow to treat her aggressively and I think the morphine, while helping with the new injury pains, is more for making her comfortable while enduring needless endstage CHF discomfort! I have chosen my words deliberately so you can understand my frustration over her care. Ruthie A. rlaba@mindspring.com


Jon's 8-22 reply to Ruthie A's August 22, 2000 - Hi Ruthie, Your rage must be hard to bear. Please remember that Jesus died for this doctor too! There is no other way for me to contain myself sometimes but to consciously think that thought about people who drive me to the edge. I have a 13% permanent partial disability from severe rotator cuff injuries in both shoulders sustained while tossing around Red and White Oak in a lumber mill a few years too long. I understand her pain and your frustration. I was sent to a company MD who sent me back to work too soon after the first injury and that's what led to the series of more serious injuries. You can learn to forgive, but it takes a conscious effort of will. I'll pray for you and for your mother - and for the doctor with his head in the wrong place - Ruthie. Hang in there. Jon.


Hedy K, August 22, 2000 - Hi everyone, Thanks to all your suggestions about not being too shy to ask at the supermarket. Normally I shop at Superfresh (we do not have Publix here) and I doubt they would be too flexible but I can try. Today Walter stopped at a nearby independently owned supermarket which caters to the carriage trade, but where we do some shopping on occasion. They have a cook who prepares various items such as stews and soups which they put in the freezer case and which we used to buy to have on hand when I didn't feel like cooking. I stopped buying those items because of the salt content. Walter asked them today if they would mind making an unsalted version of whatever they are currently cooking and putting it aside for us. They said they would be glad to. Thursday they are cooking chicken noodle soup, so he ordered two quarts of it unsalted. We shall see how it works out. Walter claims he has now cooked unsalted chicken noodle soup since we wouldn't have it except for him. Anyway, that is progress; it will be better than low salt canned stuff. Karen, I will e-mail you in the near future to ask for a list of what is available out there. hknoth@magpage.com


Janet L, August 22, 2000 - Hi, Dan and I went to a car show on Saturday, thinking it wasn't supposed to get above 80°. I don't know what the temp actually was but it was on blacktop and it was hot enough to cause Dan problems. We weren't prepared with extra water or a chair but numerous people came to our assistance when Dan nearly collapsed. We will be much better prepared next time we go somewhere requiring walking. Dan is considering looking for a used golf cart. We have a trailer we could load it into and take to outdoor type events. We have a basic wheelchair that we could also consider. Does anyone have experience with scooters or golf carts for getting around? dananjan@otherside.com


Sherry, August 23, 2000 - Hi, I posted a message here a few days ago but I never saw it put up so I am going to write it again. I took mom to the CHF specialist this past Friday and the bottom line was that she would not change a thing in terms of mom's meds and also does not recommend morphine or even Resteril. She agreed completely with mom's main cardiologist in terms of everything. She said the morphine could stop her heart and that Resteril would make her all confused and out of it.
     When I called our main doctor after the visit he asked me how I felt and said it was real important that I feel satisfied that I have done all I could for my mom. I said I was glad we went and I really am. Even though I was not expecting any miracle drug to help mom, I did have tears in my eyes knowing that there is nothing much to do at this point. If she deteriorates, of course things will have to be re-evaluated.
     On a good note, mom has been very stable the past week and a half. She actually has had some nights of sleep as well. She is definitely bouncing back from the latest infection. If things stayed the way they are now, I would be very content but I know from experience that nothing ever stays the same. I thank G_d though for her being here with us every day.
     I also wanted to say to Chris that my mother also has severe night time itching. Either I never knew how bad it was or it has gotten worse recently but I have not asked the doctor about it as yet. I will ask him and let you know what he says. If you find out anything, please post it here if you don't mind. I hope your mom feels better and I totally relate to everything you wrote. Well, that is the update. Thanks for letting me share here and G_d bless all of you. Sherry. szauderer@milbank.com


John S, August 23, 2000 - Hi, It has been since July 20 that I first wrote to you. My initial question was about approaching my father for the first time about his preliminary indications that he probably has CHF. His cardiologist he sees twice per year says he doesn't have CHF. He says all his symptoms are normal for his age (65): shortness of breath after activity such as walking a short flight of stairs, swollen ankles, slightly enlarged ventricle, and he also has had a-fib since age 40, which he now takes drugs to control. To be fair, I don't know how much of this has been offered to his doc but neither has he specifically been tested for this disease.
     Anyway, my wife and I took the opportunity during a vacation with my parents (my mother was grateful for our help in addressing this issue with him) and I showed him Marc Silver's book and mentioned this web site. It turned out that he wasn't pursuing this line of thinking but clearly had been thinking all along that he has the obvious symptoms. Because we were all in a group of his loving family (I'm guessing), he became very open to the idea of finding a CHF specialist, reading the book, and I plan on sending him a copy of The Manual. This has come to be a huge step towards treating the disease for the first time! Thanks for this forum and I look forward to future correspondence. sortorvt@msn.com


Diane's August 23 reply to Jon's August 22, 2000 - Hi Jon, Thanks for the reply - I guess I was trying to preempt any problems that may arise in the future, and I will pass on your note to Mum. She is dealing with CHF quite well at the moment, with no sleeping problems and the Imdur has cut out the angina pains at night altogether! She has days when she is very tired and looks it, and other days when she looks like her old self. She feeds our pets every day, makes herself a sandwich at lunch time and cooks an evening meal for both of us, which is waiting for me when I get in from work.
     When she got CHF, I asked the doc about this work schedule and he said if she wanted to do it that it was good exercise for her. So far she only had a problem when she tried cooking a roast the other day. It took too long and tired her out too much. So you see, she is doing so well but losing weight a lot due to the fluid loss, the doc says. She looks fragile to me and I worry so much about her as she has been so supportive and such a good friend to me as well as a mother.
     Could I ask anybody whether she is likely to beat this thing and get back to her normal self again? Some of you seem to have done so well. I have nothing but admiration for your spirit. Cheers, Di. diane.d.smith@au.pwcglobal.com


Janet L, August 24, 2000 - Hi, Dan had a new symptom last night: it felt like his heart was flopping around in his chest. Today he had a bad episode at Walmart, with enough sweating, weakness and shortness of breath to be helped to a chair while the manager finished his shopping as he tried to recuperate. I want to call the cardiologist and get him checked right away but Danny says no. I remember some post in the past about the flopping around sensation but Danny wasn't experiencing it and I don't remember what the explanation was, and whether it is serious or not. Can anyone help? dananjan@otherside.com


Janet, August 24, 2000 - Hi, My father has class 4 CHF. He presently is suffering a great deal of pain in his spine, hips and legs. The doctor wants to do steroid injections into the spine to relieve the pain. Is this a safe procedure with CHF? I can't seem to get a straight answer as to what side effects might occur and what dangers the injections may present. If you have any information, I would greatly appreciate it. Thanks. jskeith@mindspring.com


Jon's August 24 reply to Janet's August 24, 2000 - Hi Janet, That depends. Most local steroid injections are given in the muscle or near nerves to deaden them - relieving pain - and to reduce inflammation. A "nerve block" is one of the best ways to reduce severe pain, but they do cause one to retain fluid and may aggravate mood swings. They are usually given in a series, once every few days for awhile. The shot contains a local anesthetic in addition to the steroid to "deaden" the nerves and stop pain entirely for awhile.
     Those that are given "in the spine" as in cervical blocks that are injected into the spine of the neck, pose different risks. If the tissue containing the spinal fluid is punctured during the injection, another procedure is required and will include a 24 hour period of lying absolutely still as well. The headache is unreal. I know because I had one once and it did puncture that tissue.
     I recommend that if he needs that degree of pain relief that he go ahead and get the injection BUT that he absolutely insist that it be given by an anesthesiologist. If his doctor wants to do it himself, don't get the injection. It takes an expert to do it right. My own experience requires me to say that I would do it that way myself. Jon.


Mary, August 24, 2000 - Hi, I would just like to thank anyone who wrote to, or prayed for, my Dad since I found this site in April of this year. He passed away August 11th and finally is at peace. Thank you all for the knowledge and prayers that kept my family going. Cbenj95044@aol.com


Bill D's August 24 reply to Diane's August 23, 2000 - Hi Diane, Most of us never get over our heart problems and get back to "our old self." That's why they call it chronic. We can live for many years though, if we avoid salt, and exercise a little (like walking) and watch ourselves. Doesn't your mother have a timer on her oven? She could take a nap while it's cooking. <g> Bill D. billdog@gate.net


Bill D's August 24 reply to Sherry's August 23, 2000 - Hi Sherry, So much for my long distance diagnosis! <g> If her CHF specialist agrees with chief of interventional cardiology, it's me that must be all confused and out of it. ;-) Bill D. Billdog@gate.net


Gus R's August 25 reply to Janet L's August 24, 2000 - Hi Janet L, The last thread about flops, plops, and bumps of the heart that I remember starts here (let it load) and goes on for several days. Some of it is serious and might help you and Dan, and some of it isn't but a little comic relief can also be good at times.
     I can understand Dan being reluctant to see the dox about his new symptoms but one should have new symptoms checked out. Most of them are nothing to worry about and little can be done about most of them but some are very serious, and some can be eliminated. I ignore more symptoms as time goes by but I've called dox, gone to the ER, and been packed off to club med in ambulances with many "new and exciting" symptoms, and I have never been criticized for it; Not even by Medicare or my HMO. One learns by experience but if one ignores the wrong symptom, they might not get another chance. Best wishes, Gus R. gus13@net66.com


Jeanette's August 25 reply to Mary's August 24, 2000 - Hi Mary, I am very sorry to hear of you dad passing away. Please accept my sincerest condolences. I hope he didn't suffer and may God be with you in your time of mourning and healing process. I will be praying for you and your family. God be with you always, Jeanette. jeanette841@yahoo.com


Diane's August 25 reply to Bill D's August 18, 2000 - Hi, Bill and thanks for your reply. As for the sleeping while her roast is cooking, she only has to sit and read a book and 5 minutes later she is asleep, so that's no problem. She shouldn't be cooking me meals at all. I've told her countless times but this is what happens when you end up living with your Mum again! It's back to childhood. I think the key thing though, is that she feels she is being productive and I think that's important; and her meals are delicious! I'm so wicked. See ya, Di. diane.d.smith@au.pwcglobal.com


Janet, August 25, 2000 - Hi, My 18 year old son has been diagnosed with CHF for the last 10 years, and his EF is at 51%. His CHF specialist wants to put him on the transplant list, but he refuses. I am trying to get information about what to expect regarding quality and quantity of life after a transplant. We've just moved from the children's hospital we've been with for the last 10 years because my son is now a young adult, so all the medical people we're dealing with are new and so we don't have the support we had built up over time. I feel I'm going to have to convince him that this is something that would allow him to live the life he wants. The doctor's attitude isn't great. He doesn't seem to connect with us at all. Any information about life after a transplant would be helpful. js.johnston@home.com


Jon's August 25 reply to Janet's August 25, 2000 - Hi Janet. What is your son's <Vo2max? At an EF of 51%, I would certainly hesitate to go for a transplant myself. Is there a specific reason you think this is necessary for him right now? Jon.


Unknown, August 25, 2000 - Hi, My husband is on Coreg, Avapro and Lasix. He is experiencing seizure-like attacks, with tremors to one side of his body, fainting and trances (eyes fixed and body still not responding to voice or stimuli). My husband is in the hospital with these sysmptoms. The attacks or trances come mostly at night shortly after getting in bed or falling asleep. They last several minutes and it's like he's under a spell when he goes into the trance. The trance has come while watching tv also. He just freezes, and in a minute or two he starts moving again. The doctors have ruled out all neurological problems with epileptic monitoring, CAT scan and MRI. All tests indicate these are not seizures or related to abnormal brain activity. The cardiologist says his heart is stable with an EF of 35% and his heart failure under control; so much under control he has reduced my husband's Lasix down to 20mg once a day and is even considering taking him off Lasix. Please respond if this sounds even remotely familiar. cavalier_1@msn.com
 
Jon's note: Narcolepsy, maybe?


Bill D's August 26 reply to Unknown's August 25, 2000 - Hi, I had that. I used to call them my "dizzy spells." My wife would watch me when my eyes rolled back. My doctor ran CAT scans and sleep tests to see if my brain waves got scrambled. Finally, they gave me a little recorder that I could push when one of those spells came on. I could actually phone in the info. They discovered that my heart was stopping for 10-12 seconds in a row! It was because of the Coreg. I was taking 50mg a day for the last 4 years. They wanted to put in a pacemaker but I didn't want one. Besides, I would have worn its battery out in short order. I was getting those spells 4 or 5 times a day! I cut way back on the Coreg instead. That fixed it! Bill D. billdog@gate.net


John Len's August 28 reply to Jon's August 13, 2000 - Hi Jon and Michele, When I had my first bypass about 10 years ago, they were blaming the loss of memory on the heart lung machine damaging the blood cells, which in turn zonked the brain. They cannot make up their mind, can they? Here I was putting my memory loss down to old age and getting senile. After reading that article it comes to mind a tv program I watched where in China they removes a woman's lung while she was wide awake. The only anesthesia they used was acupuncure. Never happen, they would have to catch me first. ;-) John. a_lenny6@hotmail.com


Jeanette's August 28 reply to Bill D's August 26, 2000 - Hi Bill, I read that reply you gave to unknown and I see you have had sleep tests done. I have to go in for a sleep study for sleep apnea. If you went through this, could you give me some insight on how they keep you awake for the 24 hours before they let you sleep. I have never had one done and I know they will monitor my sleeping but have no idea how they will deprive me for the 24 hours. Please let me know. Anything would be helpful. Thanks, Jeanette. jeanette841@yahoo.com


Jon's August 28 reply to Jeanette's August 28, 2000 - Hi Jeanette, I am on my way out the door to my doc's but wanted to mention that my wife had a sleep apnea study done earlier this year and they didn't keep her awake. She just took her pillows and jammies, went in to the lab in the early evening and came back the next morning. Jon.


Barb L S' August 29 reply to Melissa's August 19, 2000 - Hi Melissa, My heart goes out to you, your sister and mother. I came here before but haven't come back until today. I came with every intention of hopefully putting a smile on someone's face. Instead, I cried and called my father, with whom I had a terrible argument yesterday. My father is 81 and I am 39 and have CHF (I'm adopted) and he also has CHF. He was diagnosed 9 months after I was. It's strange. I am so close to my parents that I ended up getting all of the family diseases, yet my sister, who is their biological daughter, never has. We don't talk about biological or not biological. They are my parents and sister.
     Anyway, my dad is constantly yelling about everything, but there is a reason for it and it's not the CHF. Actually, he's doing better than me and can run circles around me but I never stop worrying. I know what this disease does and he loses his balance, falls a lot and different things happen to him than to me. Also, not this past June but the previous year, they had to use a cardioverter to try to convert his a-fib 3 times but it didn't work.
     I also know the pain of losing a loved one. My mother passed away when I was 4½ months pregnant. She was my best friend. She left us just 2½ weeks before my parents' 50th wedding anniversary. My dad is lost, so lost without her. He has told us over and over that he doesn't belong here and he wants to go home with "mother." That breaks my heart. I call him but can't do too much physically for him. I will keep you and your family in my prayers. It's so true about telling people today, right now, what and how much they mean to us. I pray that you will find peace and love, and that God keeps you all very close to Him. Thank you for sharing your story. Barb L. S. Musicalheart@hotmail.com


Barb L S' August 29 reply to Paula's August 19, 2000 - Hi Paula, I just wanted to let you know that Anthony and you are in my thoughts and prayers every day. I know it is hard, but you've got to hang on because it's the only thing you can do. Have you checked out Yahoo clubs? I belong to a few for children with heart defects. There's Adam's Army. He is 14, has gone through a lot in his short life, and has a beautiful mother I'm sure would help you. She has written me back every single time within 24 hours. That's a mother who cares. There are a couple of other clubs but I can't remember the names. One may be Faith's Strength. I am going back there today so I will e-mail you with more info. Also, ivillage has a support system for children with heart defects. I went there a couple of times when Ali was sick. There is another mom there who helps. Her screen name is Grantsmom, so try that. Eventually, that was the only reason I went there anymore.
     How about you? Besides having the echo, which was a great idea, what else are you doing for yourself? You do need to speak to moms with children who are sick. That is where your personal pain is. If you don't find someone soon, please let me know and I will ask my webhost. Remember that only faith in Jesus, and talking, will get you through this. Believe it or not, I love you and Anthony. I will continue to keep both of you in my prayers. You have strength and so does Anythony because you are both children of God. Never forget where you temporarily put that strength. Take care of yourself and rejuvenate yourself by doing something for you. Barb. Musicalheart@hotmail.com


Bill D's August 29 reply to Jeanette's August 28, 2000 - Hi Jeanette, I hate to disappoint you but my test wasn't for sleep apnea. Without any warning or prior instructions, I reported to the sleep lab. They greased up my hair and pasted a lot of electrodes to my head and told me I was supposed to sleep. They darkened the room but after an hour I wasn't about to go to sleep. It was embarrassing. The harder I tried, the more awake I got so the whole test was a bust. Maybe you don't have to stay awake for 24 hours. Put your alarm clock beside you and if you fall asleep it'll wake you after 3-4 hours.
     Hey, Jon. If Rosie told me that she was going to spend the night somewhere and took the big tee shirt and the white socks that she sleeps in, I'd go down there to see where she went. <g> Bill D. billdog@gate.net
 
Jon's note: What makes you think I didn't? <lol>


Barb L S' August 29 reply to Sylvia's August 12, 2000 - Hi Sylvia, I'm pretty sure you've gotten an answer by now but my doctor's name is Alan Gass. He is the director of transplant cardiology at Mt. Sanai. He's the only doctor I feel comfortable with and I can ask him anything. He answers me in ordinary language and I've learned so much since I've gone there. I'm not sure if this is the area you are seeking but it is in New York, New York. His main goal is saving our hearts; transplant is the last option. He will point you in the right direction. You can e-mail him at alan.gass@mssm.edu. He deals as much with CHF as with transplants. God bless you and yours, Barb. Musicalheart@hotmail.com


Jeanette, August 29, 2000 - Hi Jon and Bill, Thanks for the input. I don't know why my doc said they were going to deprive me of sleep for 24 hours but that is what he said they would do. I will bring my alarm clock with me though, just in case. From what I understand, it will be done in my local hospital in a lab setting. That makes me feel better - not! Thanks guys. I will let you know how it goes. Take care and God bless you both. Jeanette. jeanette841@yahoo.com


Janet L's August 29 reply to Gus R's August 25, 2000 - Hi Gus and everyone, I am late in saying thanks for your August 25th reply, and link to the right place in The Archives. After I got over feeling panicky, I realized I should search The Archives and found it also. Since the flip-flop feelings, Dan has had several episodes of extreme weakness when he needed help from those passing by. He continued to be obstinate about waiting for his September 7 cardiologist appointment until today, when I got it moved up to this Thursday. Today, I also dragged him to an appointment I had with our internist and we talked to him about Dan's recent symptoms, including low blood pressure with the diastolic (bottom number) between 48 and 56, feeling "fuzzy," etc. He felt like Dan needed to go to the hospital for monitoring and testing, but Dan again said he wanted to wait for the cardiology appointment on Thursday so we wait. I'll let you all know what happens. Thanks again. dananjan@otherside.com


Barb L S' August 29 reply to Paula's August 19, 2000 - Hi Paula, How are you and Anthony doing today? Ok, I hope and pray. I hoped you would go to that support group but I know how hard it is asking for help. I posted for you there today. If you e-mail me and say it's okay, I can tell Adam's mom that it's okay to e-mail you privately. You could just talk with her. They have gone through a lot, so they truly understand. Anyway, I posted at Adam's Army. The info I put up was about Anthony: EF 11%, Coreg, Anthony's age and being on the transplant list. I also stressed that I appreciate everything they are going through and thanked Adam's mom again. She always writes back. She helped me during the testing for Ali (Alex) just by us talking with each other about our children and the pain they were going through. They can help you and Anthony. I cannot think of anyone better than his mom to speak with. I wasn't sure of all the meds so I didn't want to play a guessing game. Please go there or e-mail me. You will find support and you will feel better for it. Please take care. I will give you my other e-mail address if you need it when you write. Give Anthony a big kiss and hug from Ali and I. Love, Barb. Musicalheart@hotmail.com


Barbara L's August 30 reply to Jon's August 15, 2000 - Hi Jon, In your reply August 15th to Sherry, you mention how many doctors don't understand a patient's overall needs. I always had sleep problems but now it is unreal. I am depressed and lonely except for my online family. I know in my heart where my problems came from and it was no virus; it was uncontrolled high blood pressure. They should have doctors take courses about how patients feel. I lost my dad to CHF. I saw him through surgery he shouldn't have had and what they did to him as he lay in a hospital ICU for 2 months. He looked like he had shell shock. I am not too trusting of doctors. I read an article in the newspaper a month ago about a cardiologist's 13 year old daughter who came down with CHF, and how it took a year but she responded to meds. One thing that doctor knows now is to treat his patients with more kindness. Well, enough. I wish you sleep and peace. God be with you. Sincerely, Barbara L. HappyEloise@aol.com


Jon, August 30, 2000 - Hi caregivers! I saw an article in the Wall Street Journal about the Americans With Disabilities Act as it relates to caregivers. I am too tired to type it but am scanning a copy and temporarily putting it here if you're interested. My wife walked into a trial subscription of the Journal with her new job and I'm gonna hate it when it runs out. <g> Jon.


Carolyn, August 30, 2000 - Hello, I thought I would put a note in before even reading from this page. My father lives in England and was diagnosed with CHF about a year and a half ago. Oh boy, the docs in England just don't have the same connection they have here. My mother doesn't know anything about anything because the resources just aren't there. Anyway, my father was admitted again today because they cannot find the medication to eliminate the fluid! Yesterday they found that he also has an irregular heart beat and that may be the cause of the medication not working. In the meantime his legs are like tree trunks and his feet cannot find a shoe that fits! Any info would be greatly appreciated. I am flying out in October or sooner if necessary and really need some support right now. They say people can live for years with this condition, if properly treated. Thank you and my heart goes out to all of you who have loved ones suffering from this horrible disease. Carolyn. Eddieviel@netway.com
 
Jon's note: Most of us CHFers are just too ornery to die! <g> Be sure to read The Manual


Michele, August 30, 2000 - Hi all, I haven't posted in months. It's been that long since I was dealing with my mom's frustration and anger over her CHF diagnosis. Thank you to those who e-mailed me with support and suggestions. I'm sorry I didn't e-mail back; it was a problem with my server. An update on mom and perhaps a reality check - it certainly was for me - on July 13th, mom was medivac'd to Brigham and Woman's Hospital in Boston from her home in Maine. Maine Medical had run out of ideas. Within 2 weeks, while she was being evaluated for a heart transplant, I watched her diminish at an amazing rate. She was on dialysis and hallucinating up a storm. The day came when she started to slip away and my brother and I had to make the terrible decision as to whether to let her go or not. There was no promise at that time of any intervention that would save her life, only prolong her suffering.
     We decided to let her go and as we stood by her fading body and I asked for a chaplain to be present, the phone rang. It was a physician who had been working with mom and he wanted to let me know that they might possibly want to place a device in her body the next day to provide the circulation she needed and bridge her to transplant. Divine intervention? The governer's final hour pardon? We were't sure which so we changed our minds again and put her on life support. The next day she had left and right heart assist devices placed in her heart. Shortly after that, her kidneys started functioning. Within 2 weeks and after 4 other surgeries to control bleeding, I was able to speak with her. Now, 5 weeks after this surgery, 2 days after her tube feeding stopped, she is eating enough to nourish herself and she is able to walk while the nurse push the 75 lb assist device, about 2 loops around the unit. She sounds like my mom again. We know that she is building herself up for a purpose. We know that as soon as she feels her best, she'll be placed on a transplant list and will have to undergo the marathon of a life time. We also know that she has tremendous strength and will.
     So although I can't be with her as much as I would like right now (I have a 2 year old who also needs me and I live 600 miles from Boston), I am encouraged by what I have seen my mother do and what the physicians and nurses have accomplished for my mom and for me. As a medical professional myself, I am definitely not in the mindset of viewing doctors as gods. They are as human as we are and some need to be reminded of that. For those who have treated my mom with respect and compassion, I have let them know how much this means. For those who have acted as some of you have experienced - without compassion - I have told them what I expect. Even when the surgeon who performed my mom's first operation and who will perform the transplant said to my mom when she was literally hurting from edema that "a little fluid never hurt anyone" and also said she wouldn't even notice the feeding tube because it was "no big deal," I let him have it by stating "A little fluid quite literally hurts my mother" and "Doctor, have you ever had a feeding tube placed?" to which he replied no. I said, "Then I guess you don't really know if it is a big deal or not, do you?" Even Doctor ego needs to be reminded sometimes when he or she oversteps the bounds of human dignity. Am I thankful he is my mom's surgeon? You bet! He has performed over 400 transplants in his career and very many were successful.
     Well, I'm so long winded. I hope that my recollections of the last few months have helped you and maybe inspired or motivated you. I'll write again when mom has her transplant. Take good care of yourselves. Michele. mdlewis@radford.edu


Barb L S, August 30, 2000 - Hi everyone, Barbara, I wish you all the luck in the world and you're both right. This is one of the main reasons I had to change doctors. I had no answers except through my family and some people online and I desperately wanted some control of my life back. Every time I went to my local cardiologist and asked him if I was improving, what kind of exercise would help, and expressed that I was depressed because I've been tired for 3 years, he had no answer except "You have to have a transplant. Don't you understand that?!" Also, I'm a firm believer that if we don't move too much, anything and everything will have the power to depress us. Well, I was frightened to give up a world renowned doctor but even though eventually I will need a transplant according to all the doctors, I believe in miracles. I truly do, and my heart goes out to you. I hope you find the doctor who is best for your needs. Keep looking until you do because you're worth it. Also, my condolences for your father. My father is 81 and has CHF. He is doing alright now but I still worry about him and what his doctor is like and is he treating my dad as one whole person, not just one body part? I had only one opportunity to meet him and that's because I am stuck at home a lot. I will keep you in my prayers. Alikeys@hotmail.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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