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

Al H's 2-1 reply to Bill D's 1-31      are you thinking of Ross procedure?
 
Katherine J's 2-1 reply to Lesley H's 1-31      similar situation
 
Candy's 2-1 reply to Lesley H's 1-31      sister suggestion & more
 
Marion M's 2-1 reply to Lesley H's 1-31      free audio books suggestion
 
David Schaller 2-1      exercise ability question
 
Julie F 2-2      Linda Monserrate's address & good news
 
Karen D's 2-2 reply to Deb J's 1-26      great news! update on us
 
Bill D's 2-2 reply to Lesley's 1-31      friends' visits & more
 
Ruthie A 2-3      update on my mom
 
Wendy M 2-3      questions about my mom's end-stage care
 
Jon's 2-3 reply to Wendy M's 2-3      some meds info
 
Donna P 2-3      thanks for your prayers
 
Bill D's 2-3 reply to David S' 2-2      exercise
 
Barbara F 2-5      intro, husband end-stage, angry & more
 
Renneé 2-5      intro, seek pen-pals, scared & more
 
Rachel 2-5      exercise questions
 
Jon's 2-5 reply to Reneé's 2-5      good suggestion!
 
Jon's 2-5 reply to Rachel's 2-5      exercise
 
Jon's 2-5 reply to Barbara F's 2-5      for what it's worth
 
Phyllis E 2-6      how long will husband last drinking?
 
Wendy H's 2-6 reply to Renneé's 2-5      coping
 
Carolyn ? 2-6      have 2 teen daughters with DCM
 
Jon2 2-6      questions about mom, Coreg & more
 
Jon's 2-6 reply to Jon2's 2-6      Coreg & Capoten
 
Candy's 2-6 reply to Barbara F's 2-5      life's twists & turns, & more
 
Nancy M 2-6      question about inherited CM
 
Karen D's 2-6 reply to LeeAnn D's 2-5      low sodium bread recipes
 
Karen D 2-6      anyone get stiff neck as symptom?
 
Karen P 2-8      update, right-sided heart failure questions & more
 
Johnnie 2-8      question about husband's sleeping, swelling & more
 
Jon's 2-8 reply to Johnnie's 2-8      swelling & sleeping
 
Edward 2-8      how to get my dad to gain weight?
 
Jon's 2-8 reply to Edward's 2-8      have you tried Ensure?
 
Carolyn B 2-8      female hormones & Ace cough questions
 
Suzanne H's 2-8 reply to Jon2's 2-6      serious CHF & survival/coping
 
Gus R's 2-8 reply to Nancy M's 2-6      familial DCM & heart health
 
Karen P 2-8      update on Jerry & our plans
 
Shelly 2-8      questions about end-stage CHF
 
Jon's 2-8 reply to Shelly's 2-8      end-stage CHF
 
Jamie 2-8      need info about CHF
 
Lynne Young 2-8      thank you - update on my mom
 
Katherine J 2-8      hospice questions for my mom
 
Robyn S 2-10      anger & attitude changes - is this normal?
 
Frank 2-10      are there any Cordarone replacements?
 
Jon's 2-10 reply to Frank's 2-10      possibilities
 
Dawn B's 2-10 reply to Nancy M's 2-6      update, family health histories & more
 
Ruthie A 2-11      must have the right doctor!
 
Virginia R's 2-11 reply to Dawn B's 2-10      also update on Dad, diabetes questions
 
Marion M 2-11      cellulitis question & more
 
Dotty M 2-11      prayer request
 
Karen D's 2-11 reply to Karen P's 2-10      SSD experience and suggestion
 
Andrea 2-11      mom needs transplant - scared, have questions
 
Christy 2-12      CoQ10 questions
 
Jon's 2-12 reply to Christy's 2-12      CoQ10
 
Karen P's 2-12 reply to Marion M's 2-11      had similar problem
 
Karen D's 2-12 reply to Andrea's 2-11      our transplant experience so far
 
Carolyn B 2-12      scary cough, sick family, prayer request & more
 
Jeanie Troy 2-12      update, anger, getting past guilt
 
Lee R's 2-12 reply to Jamie's 2-8      getting CHF info & more
 
Lee R's 2-12 reply to Andrea's 2-11      transplant info & best wishes
 
Virginia R 2-12      Coreg & diabetics' blood sugar tip
 
Dotty M 2-12      why doesn't he feel better?
 
Bridget E 2-14      question about husband's care, swelling
 
Bill D's 2-15 reply to Dotty M's 2-12      CHF info
 
Bill D's 2-15 reply to Bridget E's 2-14      low sodium diet, fluids, meds & more
 
Katherine J 2-15      update & prayer request
 
Lee R's 2-16 reply to Bridget E's 2-14      swelling, doctors, info & more
 
Donna S 2-16      health problems, dad, insurance & more
 
Jon's 2-16 reply to Donna S' 2-16      stress, one day at a time
 
Katherine J 2-17      update on mom, thank you for prayers & support
 
Anita S' 2-18 reply to Donna S' 2-16      possible support sources
 
Deb J's 2-18 reply to Andrea's 2-11      transplant as viable option
 
David G 2-18      a-fib defibrillator question
 
Jon's 2-18 reply to David G's 2-18      take a look at this
 
Kim B 2-18      inevitable doesn't have to be all bad
 
Elizabeth Tidd 2-18      what is heart failure?
 
Dawn B 2-18      Gary died yesterday
 
Linda ? 2-18      how to cope with the teeter-totter?
 
Yvo Wijnen 2-19      infant with HCM/Pompes disease - questions
 
Candy's 2-19 reply to Elizabeth Tidd's 2-18      CHF information
 
Jon's 2-19 reply to Yvo Wijnen's 2-19      Pompes disease
 
Connie 2-19      intro, husband has CHF & cancer - questions
 
Bob O 2-19      mom has mental fogginess - questions
 
Stan 2-20      is transplant only way? frightened
 
Jon's 2-20 reply to Stan's 2-20      we'll help all we can - questions
 
Al H's 2-20 reply to Bob O's 2-19      similar experience - suggestions
 
Virginia R 2-21      update on Kathy J's mom after bypass
 
Karen P 2-22      hospital "draining" questions
 
Vanessa Clarke 2-22      post-transplant life expectancy
 
Joan K's 2-22 reply to Linda's 2-18      coping
 
Katherine J 2-22      update on mom, question
 
Candy's 2-23 reply to Karen P's 2-22      coping with swelling, fluids, Lasix & more
 
Lee R's 2-23 reply to Vanessa Clarke's 2-22      welcome, info, support & more
 
Judy 2-25      seek info about condition
 
Julia L 2-25      anxiety, sleeplessness, appetite questions & more
 
Anne 2-27      questions about mom's CHF stage
 
Virginia R 2-27      update, questions & worries, & more
 
Gus R's 2-27 reply to Judy's 2-25      hospice sounds very appropriate
 
Cheryl 2-27      skin discoloration questions & more
 
Anna F 2-27      frustrated with docs & more - please write/pray
 
Dawn B 2-27      thank you all & more
 
Joan K 2-28      being a caregiver & more
 
Cheryl's 2-28 reply to Anna 's 2-27      e-mail address request
 
Carolyn B 2-28      update, LVADs amaze me & more
 
Paul B's 2-28 reply to Julia's 2-25      appetite, assistance & more
 
Virginia R 2-28      update on dad, doctor questions
 
Jon's 2-28 reply to Virginia R's 2-28      doctors & nurses


Al H's February 1 reply to Bill D's January 31, 1999 - Hi Bill D, Is this the post you were talking about? This rang a bell with me but I did not remember it being Dor's procedure. Are you talking about the Ross procedure? Somebody posted on October 21, 1998:

     "Hi, My 43 year old husband died in ICU after a Ross procedure at Scripps in La Jolla in July. I'm still very angry at the doctors for not telling me he was dying! He was chemically unconscious so he wouldn't 'fight' the ventilator. We both had so much to say and didn't say it. He lived 2 1/2 weeks after surgery but died of multiple organ problems and cardiac infarct. I'm so angry still and cry all the time. I'd like to hear from others who have had, or contemplate, a Ross procedure." linharp@mscomm.com
     Bill D's October 27 reply to Linda H's October 26, 1998 - "Hi Linda, I'm sorry you're having trouble finding the Ross Procedure Page. Here's another way to find it. Go to Yahoo Search Options. It's at http://search.yahoo.com/search/options. Dot both the Intelligent Default and Yahoo Sites buttons. Put in 'Ross Procedure' with the quotation marks. The first one that comes up is 'The Ross Procedure Page.' It's a complicated, 2 1/2 hour operation where they remove the aortic valve and put the pulmonary valve in its place. They are about the same size. They use a new 'tissue' valve to replace the pulmonary valve. Bill." billdog@gate.net

     Al H. bobal@notnow.com


Katherine J's February 1 reply to Lesley H's January 31, 1999 - Hi Lesley, It sounds to me that your situation and mine have a lot of similarities and, though I don't have an answer to your problem, I'd love to hear the answers you get. How old is your Mom? The one advantage I have is that Mom does have friends who haven't yet faded off with the "let me know if there's anything..." but I can see those days ahead. Anyway, take care. Katherine. kathj@sfbay.net


Candy's February 1 reply to Lesley H's January 31, 1999 - Hi, It sounds like you're doing a good job with your mother. Does your sister understand the seriousness of your mothers illness? If your sister hasn't done it, maybe you can get her to talk to your mother's doctor. It also sounds like you are a great source of support to your mother. I bet she really appreciates your help and support. CMPotila@aol.com


Marion M's February 1 reply to Lesley H's January 31, 1999 - Hi Lesley, The Braille Institute is an organization that provides books on cassette tapes for anyone that is blind for any reason. All you need to qualify is a letter from a doctor saying that your Mother cannot read for a medical reason. There is no charge for the tapes and they have been a life-saver for both my grandparents over the years. Listening to a well-read story is easy to do and can perk up the spirits in many ways, much more interesting than TV watching. It's worth a try to contact your local branch of the Braille Institute. monty5230@aol.com


David Schaller 1, February, 1999 - Hello, My 78 year old father has CHF. He is coping well, on good meds, and wonders about the amount of exercise other like-folks are able to enjoy; especially those with EFs lower than 20. Any reply appreciated. Thanks, David A. schaller.david@epa.gov


Julie F, February 2, 1999 - Hi, I haven't posted here for awhile but I received a message last week from Linda Monserrate about her 12 year old son who has been diagnosed with CHF. I haven't been able to get a message back to her because the address keeps coming back as undeliverable. The one I've used is
monserrateku@dmps.des-moines.k12.ia.us. Does anyone know her correct address? Linda, if you read this, please write back. Also, we had some good news about my son Bill (he's 18 and has CHF). His doctor tried a second time to start him on Coreg, but once again, his BP was too low (he's been on Accupril since October). The good news was that his irregular heartbeat is gone. Apparently, the meds are strengthening his heart, since the irregular beat was the result of the weakened heart. First good news we've had since October. God is listening to our prayers. Jon, I hope you're feeling better by now. Julesbug78@aol.com
 
Jon's Note: Yep. Just really tired from Ace inhibitor increase Sunday


Karen D's February 2 reply to Deb J's January 26, 1999 - Hi, Congratulations on your husband's new heart! Your latest post said that he will go back to work in 6 weeks. I had no idea recovery could be so fast - that's amazing to hear. You must be so relieved. I haven't posted in awhile but my husband Bill completed all of his transplant evaluation tests and consultations January 13th. We have been waiting since then for their medical review board to meet and decide whether to accept him as a transplant candidate. They finally called today and told him he's accepted. They will see him every 4 to 6 weeks to monitor his condition and when (or if) he gets worse, they will actively begin to look for a new heart for him. His EF is 12% to 15% and an AICD was implanted in early December. We are waiting to hear whether his SSD application is approved and he has also had to apply for disability retirement from his employer. That decision won't be made for another couple of months. He would much rather be working, so I'll be sure to tell him about your husband and how well he's doing. Karen. deitemey@kua.net


Bill D's February 2 reply to Lesley's January 31, 1999 - Hi Lesley, Your Mother's friends are uncomfortable to be around someone who's dying. Not only do they realize it will soon be their fate too, it's because they don't know what to say. You will have to help them. Explain that your Mom knows she's dying and she would value short visits from them. A visit of only 15 minutes to half an hour. She doesn't want to hear, "she looks so much better." Tell them what your Mom would like to talk about; What's going on in her circle of friends, adventures they had in the past, anything your Mom would be interested in hearing about. Make it easy for them to visit and tell them your Mom will appreciate it. Only caregivers and angels comfort the dying. Sometimes it's hard to distinguish between them. Bill. billdog@gate.net


Ruthie A, February 3, 1999 - Hi all, I have an update on my 80 year old mother. She was diagnosed with CHF last June and it took 7 months before her PCP finally admitted that he could do nothing more for her and referred her to a cardiologist. In the meantime, she has been retaining more and more fluid, struggling with shortness of breath, and getting so tired that she would cry all the time. I'm surprised she hasn't collapsed!
     The cardiologist gave her an EKG, echo, ultrasound of her liver, chest x-ray, blood tests, etc. He not only confirmed the CHF, but said her heart was grossly enlarged with an EF of 10%. He immediately doubled her Ace inhibitor, tripled her Lasix, and put her on a beta-blocker. Since mother lives in an assisted-care facility now, she has to walk to the dining room and the cardiologist said her room was too far down the hall - she was overdoing the exercise routine. He sent an order to the nurses at the home to move her room closer to the common areas. He also ordered mother to nap in both the morning and afternoon, which the nurses were to enforce. My mom is balking at being limited in her activities but obeys. Can you imagine having to face an irate nurse if you didn't obey doctor's orders? <G> Anyway, mother and the cardiologist also discussed her future. He said if she were even 10 years younger, he would insist that she be hospitalized, her heart cathed, and possibly an angioplasty done. However, her age and physical condition preclude that. After discussing her living will and DNR request, they agreed that he would treat her medically, making her as comfortable as possible, until her heart gave out. Then he would do no more.
     It is such a relief to me to hear that she finally is getting the care she has desperately needed. She loves her cardiologist (thinks he's cute!) and will do what he says. With proper monitoring and treatment, I am sure my mother has many years left in her to aggravate the daylights out of me! I'll be glad to take it! <G> Ruthie. rlaba@mindspring.com


Wendy M, February 3, 1999 - Hi, I just found this site by accident while desperately trying to make sense of what is happening to my 91 year old mother-in-law. Mom fell in October of 1998 and broke her hip and arm. Until the fall, she was an active, sharp wonderful lady who lived alone and managed to take care of most of her own needs. The doctors did a hip replacement and set her arm. Her bones mended but her mind failed rapidly while hospitalized. At the beginning, her prognosis was really good because she had been in such good health. After another surgery for infection in the hip and further mental deterioration, it was decided that she could not return to her little house and she was placed in a nursing home.
     Over the last year, she has been hospitalized several times for pneumonia and breathing difficulties and CHF. She now lies in ICU at a hospital in Kingsville, supposedly being made comfortable while nature takes its course. However, I am not sure if the doctors are doing more than making her comfortable. There is a DNR on file at the hospital and her wishes are that no unnecessary medical procedures be attempted but they have her on heparin, nitroglycerin and some medication that begins like "dom." Her children all think that they are just making her comfortable and keeping her out of pain but I am not so sure and I am so confused. I don't have the medical knowledge that appears here on this Web page but my instincts tell me something more is going on here then the family thinks. They won't even make an effort to get the doctor to sit down and explain to them what they are trying to accomplish! Meantime, this dear, sweet, wonderful lady lies there not knowing where she is and what is going on. I don't know what I am trying to say, just thanks for letting me blow off steam. WMa2665164@aol.com


Jon's February 3 reply to Wendy M's February 3, 1999 - Hi Wendy, I have to make this quick because I am about to leave the house for church, but the heparin thins her blood to prevent a stroke. The nitro is to dilate her blood vessels so her heart has to exert very little effort to pump, and also to prevent angina, which is very painful. The "dom" I don't know about. I can only guess that it is an inotrope like dopamine or dobutamine, which strengthens the heart beat and usually greatly decreases discomfort, pain and CHF, although it actually wears the heart out faster and hastens death. It is only used in end-stage CHF since it hastens death. It is a "quality of life" med and in no way extends life, but rather slightly shortens it. Be sure to call a local branch of hospice and see if they can pay a visit to the family. Go with God, Jon.


Donna P, February 3, 1999 - Hi, I just wanted to drop a short note to thank everyone for their prayers for my parents. My father came through the surgery and his doctors believe his cancer had not spread beyond the tumor. I had said my parents were scared of dying. I meant they were afraid they would be very lost without one another. They have been married for 57 years and were afraid for each other. Thanks again. Jon, I'm continuing to pray for you and your family! Donna P. dppyles@erols.com


Bill D's February 3 reply to David S' February 2, 1999 - Hi David, Your local hospital probably has a "rehab" program. Nurses oversee patients and will suggest exercises for them. It mainly comes down to what he's comfortable with. He shouldn't push himself. Walking, even slowly and for short distances, is great. Down here in Florida, they open the malls early when it's too hot to walk outside. All the "seasoned" citizens walk there. We even have a few romances blossoming! Bill. billdog@gate.net


Barbara F, February 5, 1999 - Hi, I have been reading all the posts and finally got enough nerve to talk. My husband is 46 years old and was diagnosed with CHF about 5 years ago. He is now in end-stage disease. He is on every kind of heart med you can think of. In the past 5 years, he has been in the hospital many, many times. When he was admitted to the hospital last week, his EF was 10%. He came home from the hospital and went back in 4 days later. He is now home again, but this time, he came home with a pump for dobutamine. He took it for 8 hours at night but that was not working so now he takes it for 16 hours. His depression is getting worse, just as the CHF is also. We are all having a very difficult time with this. I am really not sure of his time remaining here with us. I really don't understand. You always hear of other people's miracles - where is one for him? I am sorry to sound so harsh. I guess some of my husband's anger is rubbing off on me. Thank you for letting me sound off. Friday, we are going back to the doctor's and we shall see. Thanks, Barbara F. NavyMom96@aol.com


Renneé, February 5, 1999 - Hi all, I just found this site after spending many sleepless nights. My husband, who is 39 years old, was told he has severe dilated cardiomyopathy. He is not on a transplant list yet. The medication he is on is working very well. He is on Coreg, which seems to be doing a good job. If there is anyone out there that can relate to this condition, I would love to hear from you. It is very scary to hear your husband's doctor tell you that he could die. I am 31 years old and I was not prepared for this. I would love to hear from anyone who would like to just chat. Hey Jon, can I make a suggestion? How about a page for kids? We have 3 daughters that are trying to deal with this also. Does anyone out there have children that are going through this? I did feel very alone in this but after reading some of the other letters, I know I'm not alone but I would love to hear from someone. Thank you. minsch@myhome.net


Rachel, February 5, 1999 - Hi, My husband has DCM and is 28. He is at a loss as to what to do to exercise. The cardiologists have all said different things. The final advice was that he exercise but not to a point where he broke a sweat. Well, Shawn is and always has been, a sweater - not the wooly kind. Anyway, he could turn his head and start perspiring. I have known him since he was 13 and this is just Shawn. He feels great and chooses to do nothing for fear of doing too much. He knows that isn't good, but he hasn't had any consistent recommendations other then no powerlifting. How do you know what the limit is? It isn't as bad in the summer because he plays softball, rollerblades, etc. He just considers that a good time and not a concentrated effort to work out. Help! sfields@iquest.net


Jon's February 5 reply to Renneé's February 5, 1999 - Hi Renneé, The kids' page is an outstanding idea and I'll seriously consider it. My main problem is my own energy level. I might not be able to maintain 3 forums and 2 mailing lists,and still keep updating the information pages. CHF bites, ya know?! ;-) I will think it over, though. Of course, if anyone on the CHF Web Ring takes a notion to provide a young people's forum, I wouldn't complain, either. <G> Jon. PS. Am I spelling your name right?


Jon's February 5 reply to Rachel's February 5, 1999 - Hi Rachel, Honestly, if your husband can still go rollerblading and play softball, a structured walking program isn't going to do him any harm. <G> Regardless of fitness level, it's the best CHF exercise because of the pumping action of the heels. Jon.


Jon's February 5 reply to Barbara F's February 5, 1999 - Hi Barbara, I'm a CHFer, not a caregiver, so my take on things is bound to be different. Like most of us CHFers, I am sure our part is easier than yours. Luckily, I got past my anger at being sick quickly but obviously your husband has not. The tough thing is to decide at whom, or at what, we are really angry. Are we mad at life - because we are denied a long, normal one? At God? At healthy people? At ourselves for destructive behavior, or for not taking advantage of our time better when we were healthy? The list can be long. Once we know the focus of anger - if there really is one - we can start to deal with it, and that's when we can start to really cope with our situation. If we're just plain mad, but not at anyone in particular, sometimes realizing that can take a big weight off our shoulders.
     The thoughts that come to us when we focus on our own situation are many and varied. I can't very well be mad at God. After all, I wouldn't have had any life at all without Him. He let me have 36 healthy years. How well did I use them? That's for each of us to decide for ourselves. Life is too vague a thing for me to be mad at it. I was a bit mad at myself but it was already a little late for that.
     The easiest way I have found to describe my attitude is that I have been dealt this hand, whatever the reason, and now it's up to me to play it. The key part is the "it's up to me." It's like getting angry at another person. They don't actually make us angry. They do something and we say it makes us angry but the anger is our choice. We choose to be angry. No one can make us mad - only we can do that. So to find peace, we have to make a choice to seek it, actively and honestly. It's very hard and I never managed it myself. Jesus Christ gave it to me as a gift. That's why I can't give anyone a formula to get past their anger. It's up to them. Do you want peace? Does your husband? I am a lousy preacher so I try not to, but I must be honest - Jesus is my peace, my hope and my comfort.
     I can't speak for God about miracles. I can only turn to His word for help. Remember Jesus in the garden of Gethsemane? He prayed that his fate be changed so He wouldn't have to suffer pain, more humiliation and death (Matthew 26:39) - "O my Father, if it be possible, let this cup pass from me." His prayer was answered. The answer was no. But He knew this would probably be the answer and He was ready to accept that. His very next words in that same prayer were "nevertheless, not as I will, but as thou wilt." I suppose that's one of the reasons many prayers aren't answered and many miracles aren't done. We ask, but we aren't ready to accept God's answer unless it's the answer we want. It's not an attitude that lends itself to mercy from Him whom we ask. I do not suggest this is why your husband hasn't been healed. I don't know what is in anyone's heart. It is food for thought, though. Feel free to continue the discussion, by post or by e-mail, if you'd like. I certainly don't mind. Jon.


Phyllis E, February 6, 1999 - Hi all, Does anyone know the stats on heavy alcohol use with CHF and cardiomyopathy? My husband is doing great with the meds and does not seem to have any problems other than a hangover. I would like to know how long they last? He even drank a fifth while wearing a monitor to check his fibrillation, which is not good. It is known alcohol comsumption that caused it, so it can't mean he can keep this up. I would appreciate if anyone has known anyone that has done this and got away with it. Thanks, Phyllis E. PErnsberge@aol.com


Wendy H's February 6 reply to Renneé's February 5, 1999 - Hi Renneé, My husband has the same DCM (all of a sudden, surprise!) and he is 42. I, however, am 43. We have 5 kids, ranging in age from 14 to 20. We all took it pretty hard, but are getting used to it now. It has been 3 months since the emergency trip to the hospital and the diagnosis. One of the first things I did was send a letter to all the schools they are in explaining what is going on at home and asking that the teachers and counselors be made aware for support purposes. I also explained why I was unable to attend parent-teacher conferences (I was at the hospital) and was unable to devote as much attention to the kids for a while. This seemed to help with school problems. We have explained all the details of his condition and all about the drugs he is taking and what they do. I am a chemist and scientist so they are used to my technical explanations!
     Now that it is "old news," they find it interesting to know some of this stuff. They like to help in planning the low salt food and help make our no-salt bread in the breadmaker. They respect his shelf in the cupboard and fridge, and do not eat his low-salt foods (Yuck!). They keep an eye on what he eats! It really becomes a family affair. Now and then, when he acts like his old self and jokes around or yells at them, we are all encouraged that he is feeling a bit better! If you would like to "talk," just drop me a line. This has been a real shocker to us, as my husband was just getting to the point where he was going to "go places" with his new career. He was a real late bloomer and just got going with his real calling in life when this happened. We were looking forward to the big bucks from a decent paying job (finally) and then he became a CHFer and is unable to do much "deep thinking" and work as we used to know it. Facing this reality is the hard part, but we hang in there, as all CHFers and their families do - pretty much one day at a time. Thanks again Jon, for making this site possible! We are filing for SSD at the end of this month, after much deliberation. We both wish we didn't have to! wjh@ptcom.net


Carolyn ?, February 6, 1999 - Greetings, This is my first time in a forum of this nature. I am not ill but have 2 daughters - 12 and 14 - who have dilated cardiomyopathy and have had several family members die. I am borderline normal but I am stable. I am grateful for the meds available today, especially lisinopril and digoxin, as right now it's helping to get "the most" out of their hearts. I am also new to this world of e-mail and Web pages. God is good! littleone@integrityonline.com


Jon 2, February 6, 1999 - Hi, My 76 year old Mom had a massive myocardial infarction in early December and now is experiencing Class 4 CHF. She's back in the hospital. She is diabetic and now has sciatica from being in bed so much. Her doctor is not too forthcoming with a prognosis, so I guess he doesn't really know. Her EF a few weeks ago was 29% but I suspect it has gone down since then. The doctor wants to do an angiogram but not until she is a bit stronger. She takes Altace, digoxin, micro-K, nitrate patch, paxil and levothyroxine. She is groggy all the time. She will be taking a persantine test as she is not well enough for a stress test. My sister and I have both been taking turns caring for her over the last few months. We both live hundreds of miles away. We don't know if she can recover enough to go home or what to expect. If anyone has had some experience in this, I would like to know. Would she be a candidate for Coreg? I believe its called Capoten here in BC. jonjensen@uniserve.com


Jon's February 6 reply to Jon 2's February 6, 1999 - Hi Jon, I'll leave it to our caregivers to relate their experiences. I just wanted to mention that Capoten is an Ace inhibitor, with the generic name captopril. You can find several names for Coreg at the Coreg page. All these meds can sure get confusing! Jon.


Candy's February 6 reply to Barbara F's February 5, 1999 - Hello Barbara, I'm sorry to hear your life has changed so drastically. I have CHF and my daughter's life has changed. She is angry, scared, and sad all rolled into one. I think she wishes for a miracle, but realistically there probably won't be one. So she does the next best thing. She supports me, encourages me, and even lets me know when she's angry when I'm not doing something I should be. She doesn't know it but she is my greatest comfort. She doesn't understand why this happened either. It just happened. The irony of the whole thing is my daughter was nagging me for years to quit smoking as she assumed I would die from it. However, smoking played no part in my illness. I guess what I'm trying to say is that nobody really knows why our hearts are giving out and nobody really knows except God if we'll get better. I hope for the best for you and your family. CMPotila@aol.com


Nancy M, February 6, 1999 - Hi again! My family and I are dealing with my dad's CHF now, but I've been thinking about the future. Does anyone know if CHF is an inherited illness or an acquired one? What can I do to decrease the chances of it happening to me or my kids? By the way, thanks to Gus R for his reply to my ealier post! dmiller949@aol.com


Karen D's February 6 reply to LeeAnn D's February 5, 1999 - Hi, You asked if anyone had a good low sodium bread machine recipe. A couple of months ago, there were several posts from a CHFer named Don, who is writing a low-sodium cookbook. He offered to e-mail recipes to anyone who wanted to try them out. My husband has been making the following one 2 or 3 times a week, and it's really good:

Makes a 1½ lb loaf. Add ingredients in the order called for by your bread machine manufacturer and bake at the basic cycle.
 
1 1/4 Cwater
2 Twhite sugar
1 1/2 Tolive oil
1 1/2 CWhole Wheat Bread Flour
1 2/3 C  White Bread Flour
2 1/4 tactive dry yeast

     We are using regular whole wheat flour, since our local stores don't carry the whole wheat bread flour, but I doubt if it makes any difference. I just found Don's e-mail address (he has a bio on Who's Who, too). It's Don@arrowhead-classics.com. Have fun with your bread-making. Karen. deitemey@kua.net


Karen D, February 6, 1999 - Hi, I would like to know if anyone has had a problem with a stiff neck. My husband had been having some muscle aches & pains for awhile and his doctor agreed that it might his cholesterol-lowering med, Zocor. He was taken off it for 2 weeks, and then will go back for a checkup. It's been 4 days, and the muscle aches are gone, but Bill still has a stiff neck most of the time. If it's still bothering him on Monday, he'll call the doctor, but I wondered if anyone had any ideas. Thanks for your input. Karen D. deitemey@kua.net


Karen P, February 8, 1999 - Hi again, My husband has CHF, is 58 years old, EF 25%, had 2 bypasses and a mitral valve replacement 9/98, has an enlarged heart and lousy left ventricle. Lately, he has been unable to beat the edema in his legs and it seems to be getting ever so slightly worse and he is soooo tired. He seems to have a somewhat bloated or swollen stomach, too. His cardiologist wants to see him Monday for blood work to check his liver and kidney function, and also another echo. He is concerned that the left leg is swelling more than the right and he also is concerned that he may have right-sided heart failure. We're pretty nervous right now. It was so fortuitous of Jon to have included right-sided heart failure info 2/6. It was very informative. Does right-sided heart failure indicate end-stage CHF? I asked the doctor about beta-blockers for my husband but he doesn't think he is stabilized enough yet for Coreg. So many things to learn. I guess we'll know a lot more after Monday. Take care, all. phillik@televar.com


Johnnie, February 8, 1999 - Hi, I need some help. My husband Earl, is in Class 3 (near 4), with an EF of 15 or below, and is having difficulty sleeping. One to two hours seems to be the limit he can sleep. Anyone have any suggestions? Sleeping positions? He has a lot of fluid in his belly now and is having a hard time getting rid of it. Anyone else have that problem? For the people with comments on Coreg, Earl could not tolerate Coreg and after 3-4 months had a heart attack as a result. He goes to a congestive heart failure clinic weekly and this seems to help. Do any of you? I would greatly appreciate any comments you may have, especially on sleeping. Thanks. jonisd@traveller.com


Jon's February 8 reply to Johnnie's February 8, 1999 - Hi Johnnie, The stomach bloating is a tough one. I get all of my edema in my abdomen. The problem is that when swelling occurs there, oral diuretics like Lasix pills are not as effective. This is a quote from Success With Heart Failure 1998, by Dr. Marc Silver, page 82:

     ...when we take a pill, it has to go down to the stomach and intestines and be absorbed through the linings of these organs and work its way into the bloodstream before it can ever do its job. Excess fluid in the lining of the stomach prevents or decreases the absorption of many medications including water pills themselves... When water pills taken by mouth produce no effect, the patient either needs to be seen in the office or hospitalized in order to get an intravenous dose of the diuretic medication, which goes right into the bloodstream and bypasses the absorption phase.

     So it may take IV diuretics such as Bumex to effectively rid Earl of his edema (swelling) in the first place. The CHF clinic should be quite able to give this treatment to him right there in the exam room. I have had this done in my own CHF clinic without any problem. They did give me a cheap portable plastic urinal so when the diuretic hits me in the car, I can pull over and not be in a really embarassing situation. <G> If he is really swollen, they may need to keep him 23 hours in the hospital to completely rid him of his excess fluids. The 23 hours makes him an outpatient, which saves money over an inpatient stay and helps persuade your health insurance company to cover everything.
     I have serious sleeping problems with my CHF. I sleep with my upper body raised on 4 pillows to make it easier for me to breathe. I avoid lying on my left side because it makes my heart feel cramped and pressured. I now take 10mg Ambien every night before bed and this has made a wonderful difference. Ambien has few, if any, side effects but is a prescription drug. I hope this helps. Jn.


Carolyn B's February 8 reply to Nancy M's February 6, 1999 - Hi Nancy, In our family, CHF was the end result of dilated cardiomyopathy. It has struck my mother, 3 sisters, a nephew, and my children have DCM but have not gone into CHF; A strong case for a family passing the disease. God bless, take care. littleone@integrityonline.com


Jon's February 8 reply to Nancy M's February 6, 1999 - Hi Nancy, Carolyn is right that DCM can be transmitted through a family's generations - that is familial cardiomyopathy. There is research being done now into the genes that mark and cause this. Family members should be tested for the likelihood if this is suspected. Hypertrophic cardiomyopathy is more likely than dilated cardiomyopathy to be passed through a family. One page about this can be found at: http://imgen.bcm.tmc.edu/molgen/. A post on the Cleveland Clinic Heart Forum by one of their cardiologists suggested that 5-10% of DCM was familial/genetic. Jon.


Edward, February 8, 1999 - Hi, My father is a CHF patient who underwent a 5 way bypass in August. He has been in and out of the hospital since. His heart is very weak. He is on a dobutamine IV which is changed by the in-home nurse every other day. His biggest problem is his lack of appetite. He has a constant dry, cotton mouth which does not allow him to break down any solid food. His weight has dropped from 170 to 117. His vital signs are good, as are his spirits, and I believe if we could get him to eat, he stands a decent chance of recovery. He has tried a liquid saliva substitue which was not effective. If anyone has had any similar experiences, please let me know as soon as possible. We may still have a chance. Thank you. ejcoates@theriver.com


Jon's February 8 reply to Edward's February 8, 1999 - Hi Edward, Have you tried Ensure? It's a liquid diet supplement that is designed to aid weight gain and is fortified with lots of vitamins, minerals and nutrients. You can buy it in the grocery store. It is a very established product. Jon.


Carolyn B, February 8, 1999 - Hi, I am curious if anyone knows if there is a hormonal relationship to cardiomyopathy, and the "Lisinopril cough." My sister had DCM and said when she has PMS, her cough is worse. Also, my 12 year old developed a cough this year. She has been on Lisinopril for over 3 years, so it is not "new" to her system, but she also started her period about the same time she started her cough. Curious, huh? We have ruled out other causes. We also suspect her school building could be causing problems, as it is oldy-moldy. Air studies have been done but really no answers. Any input helpful! littleone@integrityonline.com


Suzanne H's February 8 reply to Jon2's February 6, 1999 - Hi Jon, I just wanted to let you know about my Grandmother's recovery. She is 78 years old and had 3 massive heart attacks this past summer which left her with an EF of 10%. The doctors told us she would not get out of the hospital and when she left the hospital, they said she would be bedridden the rest of her life. Last month, she went to Las Vegas for a weekend and although she uses a wheelchair at times, she can also walk around a bit. She is our miracle Grandmother. What I have learned is that your body can adjust to numbers that medically, the doctors think you shouldn't be able to adjust to. I don't want to totally sugar coat it though. Her recovery was/is slow and frustrating to her, and she has had to adjust her lifestyle a lot and take time to rest frequently but she says she talks with God often and He doesn't want to take her home yet. Class 4 is very serious, but a patient can improve! God bless you and your Mom, and don't give up! Suzanne. shavsta1@biostat.hfh.edu


Gus R's February 8 reply to Nancy M's February 6, 1999 - Hi Nancy, Your question asking if anyone knows if CHF is an inherited illness or an acquired one, is a good one. Many different "experts" give slightly different answers. In general, having a relative with heart problems is not a good sign. That's why many insurance applications ask about one's relatives. Exercise, diet, and lifestyle also play a big part in heart health and that's an area where one can make some changes. The American Heart Association has a lot of information available at their local branches and on the Internet at http://www.americanheart.org/ is a good place to start looking for information from them. There are many other good sites on the Internet, and The Texas Heart Institute is one with some very good general advice at http://www.bcm.tmc.edu/tmc/thi/matters.html. This page is titled "How to be Heart Healthy" and is how I would answer your question if I were able, so check it out. Best wishes, Gus R. gus13@net66.com


Karen P, February 8, 1999 - Hi, Just a note to say that the doctor says Jerry is "normal" for a person in heart failure. His EF has slipped from 25% in mid-December to "5 to 8 percentage points lower" this morning. He is starting him on Coreg now and wants him also to begin Niaspan. The doctor said he should quit trying to work, says he is definitely disabled and will help us in any way to get SSD. He gave him 5 years, then later said statistics would not have him alive in 5 to 10 years. We are going to get things in order, close the file drawer on them, and try to have some fun, based on Jerry's energy level. phillik@televar.com


Shelly, February 8, 1999 - Hi, My grandmother is dying of CHF. I know all the basic information on the disease but what I want to know is what happens in the later stages of the disease. The doctors said she wouldn't make it another year, and this was one year ago. I think she is on her down slope, but I want to know what to look for. She is not taking medicine, she won't use her oxygen and it is very noticable. So, do you have any information or do you know where I could get some on the latter stages of the disease? I hate to see my grandmother suffer and I want to understand her. kans@aol.cm


Jon's February 8 reply to Shelly's February 8, 1999 - Hi Shelly, I see a lot of mesages asking about end-stage CHF. I avoid making a page about it simply because the symptoms are the same - they just get worse. Shortness of breath, swelling, fatigue, inability to sleep, poor memory, and so on. Loss of appetite sometimes occurs, called wasting. That happens in most serious illnesses. Eventually, the heart just gives out - SCD (sudden cardiac death) - or a CHFer drowns in the excess fluid filling their lungs. The symtpoms really don't change, just the severity of them. Jon.


Jamie ?, February 8, 1999 - Hi all, This is my first time on and boy, do I feel dumb. My ex, with whom I am still in contact, was just diagnosted with CHF and I really know absolutely nothing about it. He won't say much about it. I guess he does not want me to worry but he's only 34 and I'd like to know as much about it and controlling it as possible. Thanks in advance to anyone for their help!


Lynne Young, February 8, 1999 - Dear Jon, I wrote a month or so ago, and I was so distressed over my mom having CHF. I can't tell you how thankful I and my mother are for you. Of all the questions we had, you were the only one to answer and you told it just like it was. Because of your Web page info, my mother quit drinking and when she went in for her heart cath, the doctor was amazed how much better she was doing. I don't think she realized the dangers until I printed your info sheet and took it to her! The results of her cath were that she needed medicine to control it, no surgery at this time - what a relief! The blockages were minimual. I don't think I am overly optismistic, I know that harder times are ahead, but not right now. Mother has said so many times how you have helped her cope with this problem and how grateful she is that I found you for her. She now has a much more upbeat attitude that she has become the old Mother I used to have before her drinking and her CHF! Thank you so much! You are in my prayers and always will be. lyoung@aol.com
 
Jon's Note: :-)


Katherine J, February 8, 1999 - Hello, I have a question about Hospice that my mom asked me tonight. She thinks that when you enter the hospice program, it means that you are no longer having any hospitalizations, etc. I know it means you don't have any heroic measures taken on your behalf, but would, if needed, have maintenance care to be comfortable. Does anyone know? Katherine. PS. Mom's been out of the hospital for 20 days - that's the longest in months! kathj@sfbay.net
 
Jon's Note: Hi, write to Christy at Grand Valley Hospice. I am sure she will be happy to answer your questions and the answers are more likely to be accurate. E-mail: cwhitney@gj.net Tell her Jon of Jon's Place sent you.


Robyn S, February 10, 1999 - Hi, My husband has had heart problems since he was 40, and is now 54. The last 3 years have been the worst. December of 1995 was his first full-on heart attack. We all coped quite well and made the necessary changes to diet and lifestyle. We thought we were doing all the right things and then 15 months later, the big one hit. During the ensuing week, I lost my husband twice, very frightening. He was not recovering so a temporary pacemaker was inserted followed by a permanent dual wire pacemaker within the next week. He was sent for bypass 3 months later. Recovery was slow but as the months went by, his attitude appeared to change and he became very angry. My question is, have others experienced the same with their loved one? I have not seen my husband like this before and am wondering if it is part and parcel of CHF and the drugs. aussie_rj@yahoo.com


Frank, February 10, 1999 - Hi, My father was recently taken off Cordarone because of its effect on his thyroid. Are there any alternative medications to Cordarone (or any undergoing trials) at the present time? Yservices@aol.com


Jon's February 10 reply to Frank's February 10, 1999 - Hi Frank, Without knowing a lot about your dad's condition - why he takes the drug - I have no idea, but assuming it is some type arrhythmia, alternatives might include RFA (Radio Frequency Ablation), pacemaker(s), ICD (Implanted Cardioverter Defibrillator) or another drug therapy. This excerpt from PharmInfoNet gives a brief rundown on some anti-arrhythmic drugs:

     The primary action of anti-arrhythmic drugs is based on their effects on certain ion channels and receptors located on the heart cell membrane. Class 1 drugs block the rapid inward sodium current. These are divided into classes 1A, 1B, and 1C, depending on their effects. Class 2 drugs such as propranolol and other beta-blockers, slow the sinus rhythm and slow atrioventricular nodal conduction without changing the Q-T or QRS interval. Class 2 drugs such as sotalol and amiodarone, block the outward current of potassium, lengthening repolarization and refractoriness. Class 4 drugs such as verapamil and diltiazem, are calcium channel blockers. Because most anti-arrhythmic drugs have active metabolites, which may in turn have an action different than that of the parent drug, it is important to take this into account when prescribing them. In addition, the presence of co-existing disorders such as ischemia, acidosis, electrolyte imbalance, hypoxia or high catecholamine levels may also influence the action of an anti-arrhythmic drug.

     I hope it helps. At least, it gives some drug names to search about. Jon.


Dawn B's February 10 reply to Nancy M's February 6, 1999 - Hi all, Well, Gary went to the doctor on Friday. They read his ICD and in addition to 3 firings, the unit had to pace him 4 seperate times. The doc was not a happy camper about this. He said he was going to talke Gary's case back before the transplant committee. Since Gary's Vo2max test back in November scored a 17 (transplant cut-off is 14 here), the doc felt we could postpone transplant for a while. The really weird thing is that since November after the test, things have gone downhill. Also, the doc started Gary on Coreg Friday. So far, so good, except it kind of makes Gary hyper. <g> As far as family history goes, I truly believe CHF/DCM are hereditary. Gary's grandfather, mother and her 3 brothers all literally dropped dead all before age 55. If it had not been for modern technology and CPR, Gary would have been just another statistic on sudden cardiac death. The doctors told us to have our 2 kids checked out every couple of years until they are in their mid 20s, and then every year due to the lethal family history (the doctor's wording). Sorry to ramble on. Blessings all. Dawn. phoenix@mt-vernon.com


Ruthie A, February 11, 1999 - Hi everybody, Just a note to underscore the need to find the right doctor for treating CHF. My mother was diagnosed with CHF last June and was "treated" by her PCP. He did almost nothing to help her except to keep doing blood tests. Finally he admitted that her case was more than he could handle and sent her to a cardiologist. Within 10 days of her first visit and with the proper medication, Mom is breathing better than she has since she got sick! She is beginning to feel better and the swelling is completely gone except for her abdomen, but even that has diminished. I believe that if she had continued with her PCP she would be close to death by now.
     So my message to you is this: if your loved one is not getting the care you believe he/she should, ask serious and pointed questions. If you are still not satisfied, find another doctor. It could be the difference between life and death. Ruthie. rlaba@mindspring.com


Virginia R's February 11 reply to Dawn B's February 10, 1999 - Hi Dawn, I'm thinking about you! Drop me a line if I can ever do anything for you. Your friend,Virginia.
     As for Dad, his blood sugars are bouncing all over the place again. I think it's contributing to his inability to sleep. He gives himself massive dosages of insulin, but I know he worries that he could have an insulin reaction during the night. So now he averages about 2½ hours of sleep a night. He is frustrated and commented that he would consider going to Mass/Joslin Diabetes Center if it weren't so far from Texas. Does anyone know of a Diabetes Center that specializes in other complications, like CHF and cardiomyopathy? He's got to get this under control. I think of you all often. giniroberts@hotmail.com


Marion M, February 11, 1999 - Hi all, I just got back from the doctor's office and my husband now has "cellulitis" in his lower left leg. He has had a purple coloration due to long term edema, but it is now quite red and very, very painful. He ran a fever of 102.6° last night but is back to normal today. He was given an antibiotic and told to keep his leg elevated. What is this about? monty@lightspeed.net


Dotty M, February 11, 1999 - Hello everyone, I have a favor to ask. My husband Jeff is not feeling very well. He has acute bronchitis and an upper respiratory infection. The doctor is running a lot of blood tests and chest x-rays to check out his heart and his diabetes. Please pray for his health as the doctor helps him get over this illness. It's so scary since he has gone into CHF. Thanks. Dotty M. mckbrown@webtv.net


Karen D's February 11 reply to Karen P's February 10, 1999 - Hi Karen, I just wanted to encourage you to go ahead and file for SSD as soon as possible. There is a 5 month waiting period for the first payment, if you are approved that quickly. We got very lucky (or maybe things are changing at Social Security?). Bill was first diagnosed with end-stage CHF in late September and his doctor told us to apply right away, and wrote a very strong letter to Social Security. Today, four months after applying, we received notification that Bill has been approved and will receive his first check in April for the month of March. We had been expecting to be denied and have to hire an attorney (read Jon's information and anecdotes about SSD) and boy, were we ever pleased today! I had written earlier asking if anyone with CHF had experienced a severe stiff neck, but now Bill's has finally disappeared, and it may also have been related to the Zocor that he was taken off because of muscle aches, and took longer to disappear than the other aches and pains. Anyway, I hope that our experience with SSD is not a fluke, and that it indicates some positive changes have taken place in that agency. Karen D. deitemey@kua.net


Andrea, February 11, 1999 - Hi, This is my first post. I have been reading the posts for a few weeks now and can't tell you how helpful it has been to me. My mom had a massive heart attack that damaged 2/3 of her heart in 1985. After she was stabalized (3 months in intensive care), she had a triple bypass. One year later, she kept going into CHF and it was discovered her main aortic valve was leaking and needed to be replaced. Obviously due to the extent of the damage, she has had 13 years of very limited activity but we have learned to accept it and she has accepted her limitations somewhat. She was 47 when she had the heart attack. Since then, she has had several mini-strokes that have affected her vision, her speach and her balance. All of these she recovered from completely. Last year she had a seizure and was unable to walk or talk for about 2 days. She recovered from that too.
     On December 30, she had what, at the time, I thought was a heart attack. I took her to emergency, where they admitted her to cardiac care unit and ran lots of tests. She did not have a heart attack but it was discovered that 2 of the bypasses are blocked again. There is practically no blood supply to the right side of her heart. She is extremely weak and in Class 4 heart disease. They cannot do another bypass, as they said it wouldn't work. Now the doctors are talking transplant! To put it mildly, we are both terrified at the thought. I am her only daughter and my father died 2 years ago. I am a single Mom and have 2 daughters. One of them lives with me. Mom has lived with us since March of l998 because she is unable to take care of herself and I don't think it's wise for her to be alone. Even when I am at work, I worry that something will happen to her. I just need to talk to someone who understands where I am at and can give me some advice on how to best support and care for her.
     We are going to see the transplant cardiologist next Tuesday. What kind of questions should I be asking? What should I expect? My Mom and I are very close and although I have lived with the knowledge for the last l3 years that she could go at any time, it seems so much more real now. Thanks for listening. andrea@direct.ca


Christy, February 12, 1999 - Dear Jon, My husband has suffered with CHF for 9 months, and he sounds like most of the letters you receive daily. I have several questions that I hope and pray you can answer, or maybe send me somewhere to find the answers. I resently read an article on CoQ 10 from a book in Via-solutions written by Dr. Atkins at the Atkins' Diet Center, New York City. I found it to be very interesting because studies have shown taking CoQ10 has improved the pump of the heart. My questions are these:

  1. Are they safe to use with Altace, Lanoxin, Coumadin, Furosemide and Potassium?
  2. What is the recommended dose for using CoQ 10 with these medications and for CHF?
  3. I'm in a small town and the doctors here have a small mentality when it comes to health supplements.What do you recommend for this?

     I would like to chat with you about other questions I have. Thank you for making this Web site. It is a comfort to me knowing there are other solutions and people going through this. I'm not alone. Christy. mealer@grnco.net


Jon's February 12 reply to Christy's February 12, 1999 - Hi, First a note to everyone - Linz's homework is taking most of my usual pooter time recently, so if posts are late, please be patient. Also, Linda is having her gallbladder surgically removed 2/23/99. Linz is a bit worse instead of a bit better lately. Prayers requested all around.
     Christy, welcome to Jon's Place!

  1. Yes.
  2. There isn't an "official" recommended dose. Personally, I recommend 1-2 milligrams CoQ10 per 1 pound body weight. This comes after much discussion and thought. Start with 30mg and work your way up. Take with fat, such as peanut butter. If you take tablets, chew them with food. It won't cure him but it may assist your husband's body to improve if combined with Rx meds therapy, exercise, and dietary compliance.
  3. Medline and other reputable resources are accessible from any computer using the Internet. There is no reason for any doctor to be uninformed. Tell them so.

Karen P's February 12 reply to Marion M's February 11, 1999 - Hello, My husband had bypass and valve replacement surgery in September of 1998 and developed the same infection in his leg in January. It was right around one of the incisions where they removed a vein. All was healing very well up until then. His really did not hurt him but it was quite red, about the size of the back of his hand, and hot to touch. Antibiotics cleared it up rather quickly, with no problems since. phillik@televar.com


Karen D's February 12 reply to Andrea's February 11, 1999 - Hi Andrea, I know how you feel. My husband was just diagnosed at the end of September with end-stage CHF, Class III. We saw the transplant cardiologist at the first of November and Bill has just completed the evaluations. We were pretty scared too (or at least I was). We really didn't know what questions to ask either. One thing that our transplant center does is to give all new patients a patient education folder that was written by a former patient and his wife, with the help of the staff. It's very informative, and takes you through the evaluation process, to the surgery and then to the follow-up care after transplant. The doctor took a complete medical history of Bill, ran a few lab tests, and then coordinated some of the testing with our local cardiology group and some was set up to be done at the transplant center in Tampa. During the transplant evaluation process, the doctors are making sure the local doctors haven't missed something that maybe could be done other than a transplant. They are verifying that the best medications are being prescribed, and they may do things like (in Bill's case) implant an AICD (defibrillator) because they found that he was likely to go into a fatal arrhythmia. We asked questions about the center's standing as far as total number of successful transplants, we asked about their mortality rate, we asked what were Bill's chances if he didn't have a transplant. Please let me know what happens Tuesday. We will be praying for your mom. Karen. deitemey@kua.net


Carolyn B, February 12, 1999 - Greetings, I have been going a bit nuts dealing with 2 teens with heart disease/DCM. My youngest has had a cough since September and has now been on Lisinopril for 4 years, so I doubt it is that. It puts me on pins and needles, because this disease can take a rapid course, and this cough does not want to go away! Teens are such fun, anyway. Then you add a 67 year old mother who has had a CVA and a father who is not doing well, with a history of CABG. Life goes on. Good night, God bless. Say a prayer or 2 or 3!


Jeanie Troy, February 12, 1999 - Hi, My father, age 80, has had CHF for about 6 years. He is now classified as Class 3-4. Until recently, he has lived in a little house we built for him next to ours in a very rural country setting. He is a retired art teacher and watercolor painting was his primary means of expression. In December, he went through a serious siege of CHF problems which required 12 days in an acute care unit to bring under control. His cardiologist and I am amazed he survived. My ignorance was probably a big factor in the delay of aggressive treatment for his symptoms, but I hadn't read your Manual yet. I will definitely recommend it to anyone I meet who has, or is taking care of someone with CHF. You are doing a wonderful service and I am sure it takes a lot of effort on your part to prepare and share all this information. So take care of yourself.
     I also want to thank you for the insight you shared on anger in your February 5 reply to Barbara. My father is in a very good nursing home, receiving good, regular meals, physical therapy and visits from old friends who would rarely or never have driven out to our remote home to see him. I know even the best nursing home still is not home, but I realize I can't provide him with the care or ease of access to care he has now. He used to talk about and even purchased nursing home insurance because he said he thought he would require that level of care given his health difficulties, but now that he is there, he is mad. He won't admit it, either. At first, I thought it was just because I have told him it was unwise for him to come home. Your response on the anger question has helped me get past some of my own guilt. Thanks so much for all you've done. God bless you. troycon@clas.net


Lee R's February 12 reply to Jamie's February 8, 1999 - Hi Jamie, Don't feel dumb. It took my doctors a year to diagnose my CHF. Needless to say, they are no longer with me! The best place to start learning about it is right here at Jon's Place. Go to the Site Index and read The Manual. You will find it very helpful. Good luck to your ex and stay in touch with us. Lee. LeeRoush@aol.com


Lee R's February 12 reply to Andrea's February 11, 1999 - Hi Andrea, There is information here at Jon's regarding heart transplant and I think it will give you some good insight. There are also a few people here who have had transplants and I'm hoping they'll write to you. Good luck to you and your Mom on Tuesday. We will remember with prayers. Lee.


Virginia R, February 12, 1999 - Hi, I believe that I have an answer for a change. Dad figured out that the only change in diet, lifestyle and medication has been his medication. The doctor cut his Coreg to 12.5mg twice a day. He had to cut his Coreg in half to achieve this. He was not getting an accurate dose each day, therefore his blood sugars were all over the place. He called the nurse and had his prescription changed to 12.5mg tablets and the results were almost instantaneous! I hope this helps prevent someone else from having insulin problems in the near future. We waited a few days to make sure the results were true, and they are. It sure feels good to know that Dad has solved this problem. :-) giniroberts@hotmail.com


Dotty M, February 12, 1999 - Hi Friends, I just found out my husband's heart is bigger than what it was but his lungs are clear. We found out last spring his heart is enlarged from CHF. He is on all the right meds, plus Coreg. What does this mean? I thought he would be getting better. Dotty M. mckbrown@webtv.net


Bridget E, February 14, 1999 - Hi, My husband was diagnosed with CHF several years ago. He last went to a heart specialist about a year ago. He does see his primary care physician about once a month and is on all the medications that seem to be indicated. His legs are really starting to swell now. If you push in on them with your finger, it makes an indetantion that stays for several minutes or more. Does this mean his heart is getting worse? He is on Lasix but refuses to call the doctor to get it increased.
     As a side note, my husband is on SSD and is receiving retirement benefits from his work. He did not have any trouble getting SSD, which was surprising because his EF was fairly high last time it was checked. However, one of the doctors he saw for getting SSD told him that at this point in his life, losing weight won't prolong his life, but it will help him enjoy what he has left. emery@bankpds.com


Bill D's February 15 reply to Dotty M's February 12, 1999 - Hi Dotty, You'd better click on "Site Index" at the top of this page. Start by reading "The Manual." Very few of us ever get cured of this stuff. While you're in there, you'll find a lot of information you and your husband should know. Welcome to Jon's Place! Bill. billdog@gate.net


Bill D's February 15 reply to Bridget E's February 14, 1999 - Hi Bridget, Welcome to Jon's Place. Your husband should see his doctor. Is he on a real low sodium diet? Does he restrict his fluids to 2 liters each day? He either needs more Lasix or one of the other diuretics they prescribe. Find out all about CHF by looking under Jon's "Site Index." Just another patient, Bill. billdog@gate.net


Katherine J, February 15, 1999 - Hello, Mom's back in the hospital (ICU). She's been there since Thursday night. She had a heart attack and has an EF of 15. They said that she has weeks, possibly months to live. There's only a small part of her heart that is functioning. Anyway, they gave her the option of having an angiogram to see if her old by-pass closed back up, and if so, to do a new one. The cardiologist says that they gave her about a 10% chance of surviving this procedure, but that no matter what, her chances are bad unless she does this. So she's going for it. The only hesitation is if her kidneys can withstand the dye from the angiogram. The surgery is scheduled for tomorrow. We haven't told her the chances the doctors are giving, but I think she knows. Anyway, keep us in your prayers tomorrow please, and, as always, thanks for being there. Katherine. kathj@sfbay.net


Lee R's February 16 reply to Bridget E's February 14, 1999 - Hi Bridget, Please call that doctor about your husband's legs. In fact, why not go directly to the cardiologist? Sometimes with HMOs, that is difficult, but I would push it. It's not my intention to cause discord between you two, but any time there is a weight gain or fluid retention, the physician should be told. Is he on any ACE inhibitor, or beta-blocker? You might want to check out these drugs on the pages at Jon's Site. Take care, and we're thinking about you. Please write and let us know how your husband is doing. Lee. LeeRoush@aol.com


Donna S, February 16, 1999 - Hi, This is Donna S. I wrote some time ago about my Dad having CHF and my worries about their financial status. Well, I can't believe this but I have come down with some very scary symptoms. My neck and shoulders have been seriously aching for 2 weeks and I have pains at specific points in different parts of my body. I am doing free-lance work and have no insurance right now. I'm only 31 and although I knew coverage is important, I was going to wait a little longer. I am taking out a policy on my own, but the quickest I can start the coverage is April 1. I am so scared to find out what is going on. Unfortunately, by looking things up on the Web, I found that lymphoma starts in the neck and shoulders, and this also runs in my family. I have to wait to go to the doctor, but I don't know what is worse; knowing or not knowing. My dad is not doing so great, either. I am so worried for us both.


Jon's February 16 reply to Donna S' February 16, 1999 - Hi Donna, I am sorry to hear you are not feeling well. Please don't jump straight to the worst conclusions, though. Muscle tension can do a lot more than people think and it also starts in the neck and shoulders. Save the serious worry for when something serious catches up with you for sure. Like the Bible says, "Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof." Matthew 6:34. In other words, take it one day at a time. :-) Jon.


Katherine J, February 17, 1999 - Hello everyone, All your prayers and positive thoughts were overwhelming. Thank you. I was able to tell mom before she went in for surgery about all your prayers and wishes, and it really touched her. So while they were doing the angiogram, the cardiologist could see that her arteries were so badly clogged (90-95% except for one) and she was having chest pains, so he had the heart surgeon brought in for surgery. She had a triple bypass and for now she's stable. She's in ICU and the next 12-48 hours will be critical, but so far so good. They're amazed that an 81 year old has such a strong will to live. And I'm sure that your prayers were a contributing factor. Thanks again. I can't tell you how much your support and generosity of spirit means to us. Katherine. kathj@sfbay.net


Anita S' February 18 reply to Donna S' February 16, 1999 - Dear Donna, I hope you are feeling better by now. Does your town have a local clinic that can help you? Since I cannot afford insurance yet, I go to the local clinic here in Columbus. They have a sliding fee scale and you pay according to what you make. They also let you carry a balance if you can't pay it when you first go to them. If your town has a group called First Link, they can put you in touch with someone who can help you. Good luck and take care. Anita S. dreamersil@aol.com


Deb J's February 18 reply to Andrea's February 11, 1999 - Hi Andrea, I know how scary it is when doctors start talking about transplants. I've been there. My husband was told he needed one in November, 1997. That was 6 months after he suffered a massive heart attack. He was 31 at the time and didn't even know he had heart problems. Anyway, in the beginning I could not even talk about it. I would just cry. Even at the doctor's office, I would sit there speechless because if I opened my mouth, I would burst into tears. During his evaluation, one test they performed was a right heart catherization. This was to measure the pressures in his lungs. They told us that if the pressures were too high and couldn't be lowered with meds (such as dobutamine), he would not be a candidate for transplant. Well, that did it for me. No longer was I worried about him having a transplant, but instead, of him not being able to have it. No lie, my attitude changed overnight. To make this long story short, he became actively listed in January of 1998 and received his heart in December of 1998.
     Although transplant is not a cure, they say you're handing in one set of problems for another, I would say go for it. We figured, "What is our other alternative?" We are very glad that we went for it because my husband is doing quite well. He is 2 months out and ready to go back to work. I heard a quote recently regarding transplant - "You are trading in an unmanageable disease for a manageable one." I think transplants scare us because there are not many of them performed, at least compared to bypass and such. The reason for this is lack of donors and nothing else. If there were more donors, doctors wouldn't have to be so picky about who they list and people wouldn't have to wait so long, would be less sick and recover more easily. Good luck to you and also to Karen D. One day at a time. Deb J. Maillay@aol.com


David G, February 18, 1999 - Hello, I'm a first time visitor to the site but found it very informative. My wife suffers from CHF, cardiomyopothy and a-fib. She has been cardioverted several times but it never seems to last for longer than 4 months, the last one lasted 2. Her doctor is suggesting a defibrillator that he says is fairly new for chronic a-fib. We have not been able to find much info so if anyone can shed some light we would be very grateful. My wife Lisa, is 30 and is looking forward to a full life with our 2 year old. Dagrez@aol.com


Jon's February 18 reply to David G's February 18, 1999 - Hi David. I only have one article, but I think it refers to what your doctor is suggesting. Please see the atrial defibrillator article on the ICD page. I hope this helps. Jon.


Kim B, February 18, 1999 - Hi, My 89 year old mother-in-law lives with my husband and me. She has CHF. She is in the last stages of her life. We have in-home Hospice care for her. It is not easy to sit and watch her go the way she is. The fluid is building up again. She has a lot of other problems. I would caution everyone to really stay on top of Coumadin. In Ma, it caused some internal bleeding. Moniter it closely. She is no longer taking any at all. She has a living will, my husband and I have a medical power of attorney. She does not want any type of aggressive treatments. I want you to know that the way things are done here are not so bad. Ma is happy and secure being here. She knows she is dying. She wants to be home. She feels safe. As corny as it may sound, she has chosen us to share in her last days on earth. Some days have some funny things happen. We try very hard not to live in a house with a great sadness. Just thought I would share this with you and hope maybe it would help someone. sgtrabmom@aol.com


Elizabeth Tidd, February 18, 1999 - Hi, Could you please tell me some more about what Congestive Heart Failure is? We just found out my mother-in-law has it. I need some information on it. Thanks for the help. ETidd14170@aol.com


Dawn B, February 18, 1999 - Dear all, On 2/17/99, at approximately 8:30AM, my husband Gary was called home by the angels. Thank you all for the support and God bless you all. Dawn. phoenix@mt-vernon.com


Linda ?, February 18, 1999 - Hi, My husband was diagnosed in May of 1997 with CHF. We got married in April of 1998, so I'm still learning about CHF and other things as well. I read everthing I can get my hands on. I work in a health/teaching environment, so I am exposed to more info than I'm able to digest but I have "real life" questions. He's taking Monopril, 80 mg Lasix, a second diuretic, Coreg (just increased to 6.5mg), Lanoxin, and Amaryl for diabetes. Around Christmas time, he had an episode that lasted a couple of months. He had swelling, feeling awful, not sleeping. His tummy is still extended but he's stable again now. Two visits to the cardiologist lately and everything is stable, which is good. He still gets out of breath with exertion and tires easily, but we still go. Life seems "CHF normal" but it's sometimes difficult to enjoy the good days because I know the bad days will come again. They may not happen until next week or six months from now, or in a year, but they will come. How does everyone deal with the roller-coaster ride of CHF? My husband stays really positive during the good times. He becomes depressed when it's bad. I somehow stay in the middle. I'm a realist. I know that his disease is progressive. What I try to provide for both of us is some stability, good days or bad, but it's tough and I need to know if this is what everyone goes through.


Yvo Wijnen, February 18, 1999 - Hi, I am the father of a baby girl of 7 months, who is suffering from hypertrophic cardiomyopathy as a result of a metabolic muscle disorder, called Pompes disease. Can anybody advise me on specific CHF treatment for babies with Pompes disease? Thanks. ywijnen@ge.cokecce.com


Candy's February 18 reply to Elizabeth Tidd's February 18 1999 - Hello, I'm sorry to hear about your mother-in-law having CHF. I would answer your question but CHF is quite complicated and you would learn a lot more by reading The Manual here at Jon's Place. He has every thing you wanted to, or didn't want to, know about CHF. Click on the Site Index link at the top of this page and it should bring you to all that information. If you have any questions or just need some support, someone will respond in this forum or most of us will be happy to respond by e-mail if you prefer. The one thing I can tell you is that CHF is not an immediate death sentence. CHFers can live for years. CMPotila@aol.com


Jon's February 19 reply to Yvo Wijnen's February 18, 1999 - Hi Yvo, I wish I had something good to report but I do not. I am very sorry. Here is what a cardiologist friend told me about Pompes Disease.

     Pompe disease is a rare and very serious illness. There is a problem with the enzymes in the lysosomes of the heart cells. Imagine a cell as a complex structure where there is an ever-changing balance of different parts. These parts are continuously built and destroyed to keep everything in balance. Lysosomes are the subcellular units assigned to destroy the old parts of cells. If the lysosomes do not do their job and destroy the old, worn-out cell parts, there is a progressive accumulation of the old material (glycogen) that enlarges, damages and at the end, kills the cell. Pompe's disease is deadly and strikes the heart within a year. Standard therapy is only supportive and I don't know if heart transplant can be considered in this case.

I am very sorry. I assume this supportive therapy would include medications to reduce heart rate and expand the arteries so the heart can do its job easier. That would mean Ace inhibitors, maybe beta-blockers or vasodilators. If you have more specific questions, please let me know and I will do my best to find you some answers. Jon.


Connie, February 19, 1999 - Hi everyone, In 1991, I lost my husband to CHF. In 1993, I married a man with heart disease. He had his second bypass in 1994. Everything was great. Then on January 1 of this year, he was admitted to the hospital with what was thought to be pneumonia. After a week, the doctors were talking CHF. Knowing what was ahead, I thought that was the worst. He's been in and out of the hospital constantly since then because his chest keeps filling up with fluid. I found Jon's Place and just kept reading the posts here - what a great help it has been. A week ago, we got the devasting news - Cancer! Because of the CHF, the doctors don't want to cut him to get specimens for biopsy. Without that, they can't begin treatment. Of course, he is definitely not a candidate for surgery. They went through the nose for specimens but no dice. Yesterday they went down through his throat, but the doctor will not be sure he got what was needed until the lab work comes back.
     I spend all of my "free" (hah) time searching the Net for some kind of support pages like Jon's Place, for cancer. So far, nothing. If anyone runs across anything like that, please let me know. Also, I need your prayers to make me strong enough to deal with this. We both know he won't be with me long. I spend at least 10 hours a day sitting with him in the hospital but when I get home, hysteria sets in! Thank you all for the input on these pages. mattier@erols.com


Bob O, February 19, 1999 - Hi, I am looking for ideas and suggestions regarding my CHF mother's "mental fog" and "grogginess" that appears to be a part of her overall age, health condition and the influence of medication. Her heart specialist agrees. My mother Ruth, has always been a generally healthy and very active person, so the limitations brought about by her age of 88 years and her health condition have been a difficult, but generally successful, transition to greatly reduced activity.
     She has a history of high blood pressure in later life and started to develop irregular heartbeats in the late 1980s. She received a diagnosis of CHF and a pacemaker in February of 1995 and has had a greatly reduced level of energy and stamina, progressively, since then. After a number of incidents of over-doing, and experiencing subsequent exhaustion later on, she has improved her management of time and exertion much better.
     Her biggest difficulty is the progressively increasing grogginess, mental fog, horrid feeling, and mental confusion, along with reduced energy levels and slight lightheadedness. The difficulty used to be mainly in the morning with clearing off by noon. It has progressed over the last several years to most of the day and improvement by supper time, and now to most of the day and into the early evening. Now, later evening hours have been the only clearer, more liveable parts of the day. She is staying up a little later in the evenings to enjoy this time, until around 11:00PM instead of a 9 to 10 regime most of her life. She had always been an active sleeper, with much tossing and turning, but now comments on how sound and still she sleeps, presumably due to the medication. She still sleeps easily soundly and fully. The possibility of too sound a sleep (apnea?) was raised with the heart specialist but didn't seem that likely to him and he wondered if going through sleep tests at an area hospital would be worth it, so the matter was left at that. Only one incident of night sweats, difficulty breathing and pressure on chest has taken place (several years ago), which resulted in a trip to emergency room and several days of hospitalization to re-regulate medication.
     Regular heart specialist appointments at 3 month intervals include blood and electronic monitoring in lab. Pacemaker monitoring results in okay reports. Fluid retention, shortness of breath, sleep difficulties and dizzy spells are always asked about, but have not been problems. The lack of energy and stamina and especially the grogginess and mental fog are the ongoing concerns related to the doctor. The doctor has changed and adjusted medication to try to improve loss of energy and stamina and the grogginess, as well as changing time of day pills are taken. No improvement from those efforts, so we are back to a maintenance situation. Prozac was tried for depression, since the condition is mentally straining, but no improvement was noted and worse side effects (increased dizziness and mental fog) were related.
     Current medication taken in the morning is a generic multi-vitamin with iron, 1½ oz liquid vitamin/mineral (MaxiSol), 0.4mg/hr Nitro-Dur Patch, 40mg Lasix, 0.125mg Lanoxin, 25mg Toprol XL and 20MEQ K-Dur. In the late afternoon, other medication is another 20MEQ K-Dur, 20mg Zestril and 325mg Ecotrin. Arthritis problems have also been a concern in the recent past. An incidence of pain medicine intolerance during an episode of severe hip pain aggravated her overall health a year ago. Things settled down after a cortisone shot in the vertebrae, along with an overall reduction in the amount of outside activities on an uneven lawn and pushing it too much. As needed for aches and pains, 1-2 500mg Tylenol gelcaps, or 1-2 200mg Advil geltabs may sometimes be taken. An open prescription for Naproxen has remained unused due to gastrointestinal problems with that medication.
     If her energy level and mental fog didn't clear up and improve in the evening but rather, remain at a constant level, we probably would resign ourselves to "that's just the way the medication works and her heart condition is." We get the impression this may be what her heart specialist is trying to communicate but doesn't want to project any level of hopelessness. My mother's activities have been reduced to telephoning and corresponding with friends and relatives, bill paying, carrying out daily living activities independently and small house cleaning projects. She very much does not want to leave her home. My wife and I live next door and get groceries, do laundry, maintain the property, go over the paperwork, have a weekly meal together and visit or telephone about every other day. There is certainly a trade-off to living independently in a familiar setting in the countryside, near family versus the security of an assisted care facility, but she is quite determined to stay at home as long as she possibly can. So far, the positives are outweighing the negatives.
     Anxiety has always been a family trait, so just the concern over specific upcoming events, along with the overall free-floating anxiety of a difficult health condition and the problems of aging, can be exhausting by themselves. Family support, along with prayer and weekly church services probably provide the best means of coping. Being able to get outside in the warmer summer and becoming more active then is another big plus. Perhaps anti-anxiety medication would help.
     All in all, my mother is coping adequately. She likes to reflect on how lucky she is to be getting along as well as she is at 88 and still able to be at home, near friends and family, while most of her peers have died. She's getting used to the idea of viewing the end of her life. However, it would make life so much more liveable if we could find some way to reduce or eliminate the mental fog and "horrid feeling." The general assumption now is that it's a mixture of the medication and a heart that may not be able to work as well as it should, that create the groggy mental fog and horrid feeling.
     I'm sorry to have rambled on so long. The excessive input probably comes from being a teacher who wants to give a full and clear explanation in hopes of getting back the best response possible. We plan on trying CoQ10 if her heart doctor gives the okay at her next regular appointment in March. Thanks for the information provided on it and everything else on your Web site. Any input would be appreciated. okeane@execpc.com


Stan, February 20, 1999 - Hi, My wife was told by her doctor at Columbia Pres that there are no more pills out there for her and that transplant is the only other way. I'm frightened. SgreenT@worldnet.att.net


Jon's February 20 reply to Stan's February 20, 1999 - Hi Stan, Fear is an understandable first reaction to such a statement. We really can't make any suggestions because we don't know anything about your wife or her health. Does she have heart disease? What kind? Is she in heart failure? How badly? Do you know any of her test results, like EF? Heart size? Vo2 results? We are here to help you learn to cope with your wife's illness. Give us what information you can and be sure to read The Manual and the Transplant page, for starters. Is her doctor a CHF specialist cardiologist? This is very important. The info at The Manual will help you know what questions to ask her doctor. Jon.


Al H's February 20 reply to Bob O's February 19, 1999 - Hi Bob, My wife and I are going through some of the same things with one of her great uncles. With much distress, we had to put him in a nursing home because his good hours are less and less. Some days he is totally out of it and then the next day, we have great communication with him. Fortunately, he now has a private room, which he appreciates the benefits of. Meds such as Prozac have an initial period of nausea and dizzy periods. I am on Paxil and this was my initial reaction but this stopped after a few weeks of the doctor adjusting my dosage. As for the arthritis, after I have slept for a long period of time, my hip starts hurting me. Once I am up and about, this goes away. However, some individuals can develop gout due to the dosages of Lasix. For this, I have a med I take which helps prevent the pain. I believe it is allopurinol. The shorter periods of your mother's lucid time is probably due to the medication and lack of exercise. If she is able to walk any, the sooner you get her up during the day and take her for a walk, may help with getting the cobwebs out of her head. She is suffering but perhaps some more activity will help. You and your family are in our prayers. Al H.


Virginia R, February 21, 1999 - Hi, This is an update on Kathy J's mom. Her bypass went well. She has had very little renal output since Tuesday, and there is a possibility of dialysis today. She says her mom is very confused, but her vital signs are terrific. I just thought I'd let y'all know so you can keep them in your prayers. giniroberts@hotmail.com


Karen P, February 22, 1999 - Hello again, My husband Jerry, 58 years ol, EF 17-20%, is still having such trouble with edema. His doctor said to try 80mg Lasix twice a day, but really no results. He had been taking 40mg in the AM only. He is afraid to go into the hospital to get the fluid off, thinking it will just come right back on. Could anyone with the "hospital draining" experience comment on this please? Thank you so much. Karen. phillik@televar.com


Vanessa Clarke, February 22, 1999 - Hi, I have never posted on this site before, I have recently made contact with a relative that I haven't seen for many years, only to find out that he had a heart transplant just under 2 years ago. I haven't been able to talk to him about it (I feel too uncomfortable to ask too many questions, in case it upsets him) but now I am very worried that just as I have found him, he might get ill. I have read as many things as I can but the one thing I cannot find is how long he is likely to live. I know it is a morbid question but I need to know. I have lost too many close family members over the last few years unexpectedly and I really need to be prepared for what may happen. I also would like to be able to offer him any support that he might need in the years to come. Any information would be helpful. Thank you.


Joan K's February 22 reply to Linda's February 18, 1999 - Hi Linda, I know it is difficult to enjoy the good days because of the anticipation of the bad ones. Perhaps for the caregivers, that is one of the most difficult things to do, but fear paralyzes and we have to be able to get past that and channel it into something positive. Having faith and believing in your higher power and divine intervention is the only thing I know that can give us inner peace. That, and of course, continuing to read this wonderful Web site.


Katherine J, February 22, 1999 - Hi, My mom's been through the wringer the last 12 days. As Gini Roberts told you, she had a triple bypass, and has been in renal failure. This was sending her into CHF - she gained 20lbs in 3 days. They've started her on dialysis. They did it for 24 hours day before last, but her kidneys haven't started functioning. They're starting her back on this morning. She's lost 10 of the 20lbs. She's very foggy and confused, but I feel that it's because her body can't process out all the drugs. Any thoughts? My good wishes to all those writing in. Katherine. kathj@sfbay.net


Candy's February 23 reply to Karen P's February 22, 1999 - Hi Karen, I was retaining fluids while in the hospital. For 4r days prior to being diagnosed, my lungs were being squeezed by fluid building up around them. Basically, after telling my PCP that I thought I was dying and I couldn't breathe, she began pumping me with IV Lasix. I can't remember the dosage as I was pretty lightheaded but it was pretty high as the nurse came in at least 4 times in one afternoon. Then a pulmonary specialist drained about a 1½ liters of fluid from around my lungs by inserting some kind of tube in my back near my lungs. I've been on Lasix ever since then and can take an extra dose if I feel I need to as prescribed by my PCP. The fluid hasn't come back to that extent since my hospitalization in August of 1998. The most that happens is my toes and ankles will swell a little. I think my abdomen retains also but I take an extra pill when my toes began to swell and that usually does the trick. I am only on 20mg a day. I hope that helps you find out what you need to know, but after learning a little more about my condition, I found most everybody on the forum retains fluids at a different rate and in different places in their bodies. For more info, go to the site index and then go to The Manual. CMPotila@aol.com


Lee R's February 23 reply to Vanessa Clarke's February 22, 1999 - Hi Vanessa, We're glad you found Jon's Place! There is also some information here on transplants and some of the folks here have new hearts! I don't think anyone can say how long your relative will live. It is wonderful that you can offer him support, we can all certainly use that, but I am sorry that you have lost close family members. Perhaps if you can just take advantage of whatever time you have to share, it will be of benefit to both of you. The folks here at this forum are very supportive so please, keep in touch. Lee. LeeRoush@aol.com


Judy, February 25, 1999 - Hi, There is someone in my husband's family who is diagnosed to be having last stage CHF. She has been suffering from CHF for nearly one year, but the last few months have been bad. She has stopped all forms of physical activity and cannot even move from the bed to the bathroom, which is in the same room. She constantly is short of breath and most often sits up because she cannot sleep. Week before last, she collapsed and has started passing stools on the bed. The doctor is brought in and medication prescribed but after a couple of days she throws the medicine away. Her legs are continuously swollen. Now she has been diagnosed as also being diabetic. The whole night she moans and groans in pain. She is also constantly bloated and swollen and now she seems to be shrinking that is her face. The doctor says it is a touch and go situation. Very often, the doctor is called in the middle of the night but he is unable to do anything apart from prescribing some drugs to help her feel a little better. Could you kindly help me in understanding the situation? judyr@alghanim.com


Julia L, February 25, 1999 - Hi, My father has recently been diagnosed with CHF. He is 80 years old. In March of 1998, he had a pacemaker installed. Since then, his heart and health has gone downhill. A year and a half ago, he was walking 3 or more miles a day! His ejection fraction is at 17%. He has 3 leaky valves, the tricuspid, the aortic, and the mitral. He also has aortic stenous, 3 blocked arteries, a weak heart muscle, and pulmonary hypertension. In spite of all this, his main problem is severe anxiety attacks, lack of sleep, and erratic eating habits. Sometimes he is starving and sometimes he can't look at food. I am wondering if anyone out there has experienced these anxiety attacks. He doesn't want to be left alone. He is soooo afraid. Is there any medication that can help his mental distress? He is currently on the following medications: 5mg Vasotec daily, 40mg furosemide daily, 0.125mg digoxin daily, 5mg zaroxolyn every other day, aspirin, and 20mg pepcid. The doctor also prescribed Ambien as needed to help him sleep. He has been taking this every other evening. It helps some. I live 3000 miles away from him and feel helpless. Please give me any info possible. I have already copied and read The Manual. Thank you for being available to us and for your help. Julia L. lawrences@telis.org


Anne, February 27, 1999 - Hi, My mother was diagnosed with CHF a little over 8 years ago. Her EF is between 10-15% now, and she also has an enlarged liver that is causing her to itch a lot. Since her liver is affected, does this mean that she is in the final stage of CHF, or could she keep rallying as she has these past years? Her mental attitude is great. She has to keep an eye on the fluid retention, but each time her weight goes up, she increases her diuretics and it seems to work. I feel like I'm fooling myself in hoping that she can keep rallying for another couple of years or so. Is there any feedback anyone can give me? Anne in Des Moines. harkinae@phibred.com


Virginia R, February 27, 1999 - Hi, It's been about two weeks I guess, since Dad had his Coreg prescription filled to the accurate dosage. We did see some improvement in blood sugars. I think something else is going on now but my frustration is that I'm not there to get direct answers from him. He says he is "very sick" like he was in August. Actually, the cardiologist had suspicions that he had a silent heart attack at that time but because my father had not seen anyone, there was no way to prove it. The onset of this "very sick" condition was about two days ago. My Dad tries to tell me that perhaps he over-medicated himself on Lasix, but I don't think so. My sister tells me that he has ten pounds that won't come off. I think this means he gained in excess of ten pounds. He said in an e-mail that he doesn't feel his heart is pumping as strongly lately. Now, is there a way to really tell this? I'm sort of pulling my hair out. His doctor said for him to go have IV Lasix next time fluids don't come off. If anyone wants to send him an e-mail telling him to go to hospital, I won't mind - mcwalton@webtv.net :-) Isn't there a blood test they can do to see if a heart attack has occurred? Something to do with enzymes? Thanks for your support, as always.
     Judy, Vanessa and Julia, welcome. I hope someone can help you out soon. We share a lot of information and learn a lot from each other. I've not heard from Kathy J lately. She's working and taking care of Mom in hospital on dialysis, and I think it's a pretty good trip for her. So, she needs our prayers. I think of you all. Jon, prayers still offered heavenward for all of you! giniroberts@hotmail.com


Gus R's February 27 reply to Judy's February 25, 1999 - Hi Judy, I hope someone jumps in here with more exact information for you, but my suggestion would be for you to contact a hospice group in your area at once. Any doctor's office or hospital should be able to put you in contact with them. I think they are experts at helping both the patient and the family when the patient has little or no chance of recovery. They are not to be confused with people like Mr. Kevorkian, they are not in the suicide assistance business, but can help make one's last days as pain and worry free as possible.
     If your family member has a chance of recovery, I think they might be able to steer you towards better care for them. I could be very wrong but it sounds to me like your family member needs more help than their doc is providing and should be given some options. If I am wrong and this patient is already receiving the best care available, the hospice people should be able to explain that to you better than it sounds like the doc is doing. Best wishes, Gus R. gus13@net66.com


Cheryl, February 27, 1999 - Hi, I've visited this site often over the past year, and have apreciated everyone who has shared. Now I have a question which I haven't seen answered here before. My husband is 35 years old and has been on blood pressure medication since he was 19. Last year he was diagnosed with dyastolic dyfunction (hypertrophic), which is the cause of his CHF. Over the past several months, we've noticed that in the areas where his edema is most noticeable there have appeared skin discolorations. I've also notice discoloration around his eyes. I know that his liver function tests are elevated. Could these spots be related to this disease somehow? He can't see his physician until the end of March, and I am trying to stay as informed as possible. Thanks for any info.
     As I have read each entry, I pray for each of you! God alone has been my strength as I watch my husband's health deteriorate, and I feel your pain as my own. I remind myself that God watched His own Son die so He too, understands our pain. Thank you, Jon, for this site! God bless. JCFUL5@prodigy.net


Anna F, February 27, 1999 - Hi, This is wonderful! My husband and I were feeling so alone. He is 36 and I am 33, and my husband has been suffering from heart problems since birth. He was ok till he turned 33 and then he had a heart attack and a pacemaker and bypass all in the same week. Three months later, he was back in the hospital with heart failure. We have been fighting with it ever since. It is nice to know that there are other people who understand what we are going through. My husband has suffered almost debilitating depression and our doctors have been so useless. I sometimes feel that if he was 60+ they would have understood, but because he is so young, they feel he can just take care of himself. The hospital where he had his surgery has one of the best heart rehab programs around but they did not even offer him any of the services. It took me calling and yelling, crying and begging the doctor to get him some help with his depression. Then they shuffled him off to a student doctor who can't council him without some one else in the room, and tells him he needs heart transplant surgery without ever looking at his medical record. Then, after weeks of trying to convice my husband to file for SSD tells him not to. I get so mad sometimes! I am going on and on, I know, but I bet everyone does in the beginning. Thank you so much for being here for me to vent. Please let me hear from anyone who is in my situation. We go back to the doctor March 15 to find out if the patch they put on his heart when he was seven is now leaking, and if he is facing more surgery. Please pray for us and I will do the same for all that are here. God bless this Web site. edward.ferguson@mci2000


Dawn B, February 27, 1999 - Hi, I would like to say Thank You to all who have e-mailed me. Your support meant a lot. Jon, you and your family have been in my thoughts and prayers. This forum is such a blessing. Dawn. phoenix@mt-vernon.com


Joan K, February 28, 1999 - Hi, It's so hard being a caregiver, doing everything we can and watching those we love deteriorate. I wish I could give my husband some of my faith and love of God to help him through this time of not being able to breathe, being afraid, knowing he is going to die and just wondering how soon, but I can't. I can only pray. I know prayer and support is the only thing that can get me through this. I know I will be losing the man I love very soon. I also live day to day, wondering if this will be the last. Each day brings more difficulty in his breathing. He is such a good, honest person. I guess God has a special plan for him in heaven but for today, I must concentrate on his living. My prayers are for everyone. Thank you for being there for me.


Cheryl's February 28 reply to Anna's February 27, 1999 - Dear Anna, I tried to e-mail you at the e-mail address you posted but was unable to have it delivered. Please e-mail me with your correct address. We have much in common and I'd like you to know you are not alone! Cheryl. JCFul5@prodigy.net


Carolyn B, February 28, 1999 - Greetings, I am keeping you all in my prayers. My kids are doing well. They are 12 and 14, and have DCM. Both are on Digoxin and Lisinopril. Our family has been what DCM leads to - CHF - but thankfully, my children have not reached the CHF stage yet but I know from our family history how quickly it strikes and I am grateful for medications, and technology now. There is even a device called the HeartMate, a battery run pump that assists a person's failing heart, and is worn externally like a backback. It amazes me. God bless.


Paul B's February 28 reply to Julia's February 25, 1999 - Hi Julia, An erratic appetite, sleepless nights and anxiety attacks are not uncommon for older CHFers, but it sounds like your dad is on his own with no one to help him out, and sometimes he may need a push to get him to eat. What about dietary restrictions? I hope he is limiting his sodium intake to less than 2 grams per day! I note that he's not on Coreg and while I'm not a doctor, the Vasotec amount seems to be on the low side. What type of doc is he seeing for his CHF? I would encourage you to get him to a CHF specialist, and if that's not possible, at least a good cardiologist ASAP if you haven't already. Call his doc and find out first hand what's going on with his treatment. If he is alone, are there any family members who can drop in on him on a regular basis? If not, if he is a church-goer, some congregations can help fill the void with a visit. There are also social services available in most communities that may be able to help. Explore all options. May God be with you. wwhc@miworld.net


Virginia R, February 28, 1999 - Hi, My dad was hospitalized on Thursday and was released on Saturday. He had confusion, weight gain and a sick feeling (malaise). His potassium level was low. They took him off Coreg and put him on Lanoxon instead. His blood sugars continued to climb in the hospital but he pointed out that he was eating an awful lot more there than he did at home. They wanted him to eat 2 carbos with his evening meal, a nice portion of protein, fruit and a snack at bedtime, which meant that around 2:30AM, his blood sugar levels were very high. They gave him a shot of Lasix and that drained off a little more than a gallon of fluid.
     I've said it before, I don't think he's getting the care from his cardiologist that he should get. Scott and White is a teaching hospital. His cardiologist is affiliated with the hospital in the clinical setting. His cardiologist never called or came by even though he was on the cardiology wing. He was seen by a team of doctors, including endocrinology consulting and a cardiologist. His regular cardiologist nurse did call him to see how he was doing. Thanks to her, Dad was admitted to the hospital. It seems that after my sister called and fussed because we were hearing, "Mr Walton, you look like things are going pretty well for you right now, blah, blah, blah" in the ER, she appraised his doctor that he was in ER. The cardiologist reportedly said ok. She then called several other cardiologists in the system until she got to the chief of cardiology who in turn called the ER doctor and gave him what for. The ER doctor sent an intern in to see if we were dissatisfied with services because "he'd been given quite an earful." Of course, the ER doctor didn't know what Coreg was and had never heard of it, so we didn't have an awful lot of faith in his experience.
     Ok, so I've rambled on and on. It just appears that Dad's cardiology nurse runs the office or at least is the only one who gets things done. Other doctors were calling and consulting with the "team" but Dad's heart doc wasn't, even during the normal work week. Am I making something out of it that shouldn't be there? giniroberts@hotmail.com


Jon's February 28 reply to Virginia R's February 28, 1999 - Hi Virginia, I'm tired so this will be short. A CHF specialist has one nurse who "gets things done." She runs the show, returns patient calls, and sets up virtually everything. Most of these women are very good and are not that far short of a medical school education after 10-15 years of this. But the doc has to be pro-active, which means involved. I know that if my cardio-nurse calls me, she has already talked to Dr. Porter and gotten his "take" on my problem - always. If I am in the hospital, Porter sees me while I am there, every day. If he is out of town, he talks to an associate on the phone about me, then talks to me on the phone so I know who will be seeing me while I am in-patient. Get your dad another doctor if at all possible. Having the right CHF doc is so important, it's in The Manual! Jon.


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

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