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

Dina R 8-1     ICD settings
 
Barb 8-1     my dad died, seek online support group
 
Barbara S 8-1     update, history on my dad & some questions
 
John Len's 8-1 reply to Jon's 7-30     working in heat & humidity - not all bad
 
John Len 8-4     addition to my last post
 
Marion M 8-4     losing weight, fighting temptation
 
Janie 8-4     questions about voice changing
 
Wendi 8-4     message for my mom
 
Pam C 8-4     update, lousy doctors, job offer hope
 
Pearl S 8-4     getting timely information
 
Ellen 8-5     14 year old son has enlarged heart now
 
Tandy K 8-5     fractional shortening question
 
Jon's 8-5 reply to Tandy K's 8-5     fractional shortening vs EF
 
Ruthie A 8-5     update on my mom, docs & more
 
Jon's 8-5 reply to Ruthie A's 8-5     that really stinks!
 
Amy Jo 8-5     update on my husband - good news
 
Karen D 8-6     update on my husband, Pearl, Dina
 
Pat 8-6     first-time post, update on my husband
 
Ben B's 8-6 reply to Tandy K's 8-5     fractional shortening & more
 
Carolyn B 8-6     update on my daughter, weightlifting question
 
Ellen 8-6     update on my son, thanks
 
Marie 8-6     family matters question
 
Pearl 8-9     update, hospice care so far
 
Raquel's 8-9 reply to Pat's 8-6     how should I take this attitude?
 
Wendy 8-9     husband's illness, questions
 
David 8-10     post heart attack fear, anxiety questions
 
Pearl S' 8-10 reply to Marie's 8-6     gathering info, life expectancy & more
 
Pat's 8-10 reply to Raquel's 8-9     coping
 
Dauna 8-10     questions - panic attacks?
 
Jon's 8-10 reply to Dauna's 8-10     drug reaction a possibility
 
Susan ? 8-10     seek insomnia solution
 
Beryle B 8-10     options, helplessness & more
 
Susan ? 8-10     intro, leg weakness question
 
Jon 8-19     update
 
Marsha 8-19     intro, meds questions
 
Pam C 8-19     update on Rick, t-wave question
 
Dollie Knoerr 8-19     intro, meds, jitters questions & more
 
Ellen Smith 8-19     great news! and to Raquel & Pat
 
Neil 8-19     seek LA CHF doc
 
Virginia R 8-20     update on Dad
 
Renee 8-20     chest pain questions, docs & more
 
Jon's 8-20 reply to Renee's 8-20     chest pain
 
Phyllis E 8-20     update on Harry
 
Sherry Z 8-20     intro, zaroxolyn question & more
 
Jon's 8-20 reply to Sherry Z's 8-20     zaroxolyn & Lasix
 
Marsha S 8-20     seek CHF doc in Lexington, Kentucky
 
Ginny 8-20     very stressed over husband's illnesses
 
Rita's 8-21 reply to Wendy's 8-9     DCM, CHF, EF, questions
 
Jon's 8-21 reply to Rita's 8-21     EF, resources
 
Rita 8-21     seek Oklahoma area CHF specialist
 
Carolyn B 8-21     daughters update, Ativan question
 
Machael 8-21     Xenical, losing weight questions
 
Jon's 8-21 reply to Marsha's 8-19     drugs for long-term use, Lasix
 
Jon's 8-21 reply to Pam C's 8-19     t-wave abnormalities
 
Jon's 8-21 reply to Dollie Knoerr's 8-19     jitters, meds, breathing & more
 
Jon's 8-21 reply to Ellen Smith's 8-19     that's great news!
 
Rachel Needham 8-22     so terribly frustrated & helpless, what to do?!
 
Jill's 8-25 reply to Rachel Needham's 8-22     venting, coping & more
 
Jon's 8-25 reply to Rachel Needham's 8-22     mind & body
 
Jon 8-25     technical difficulties
 
Loretta 8-25     seek options for husband's CAD
 
Ann Marie K 8-28     update on mom
 
Ruthie A 8-30     update on mom - not good
 
Rachel Needham 8-30     left-sided, right-sided heart failure question
 
Julie F 8-30     health insurance questions
 
Barb 8-30     intro, my dad's CHF & diabetes, & more
 
Virginia R 8-30     prayer request for my dad, update
 
Jon's 8-30 reply to Ruthie A's 8-30     harsh or just honest
 
Jon's 8-30 reply to Rachel Needham's 8-30     right & left-sided heart failure
 
Lesley 8-31     intro, ready-made meals & more
 
Jon's 8-31 reply to Lesley's 8-31     welcome, sodium restrictions
 
Kim 8-31     hi, have CHF questions about my dad
 
Jon's 8-31 reply to Kim's 8-31     welcome, a good place to start


Dina R, August 1, 1999 - Hi, We went to the doctor last week and asked about the settings for John's ICD. His is set to go off at 190 bpm and his first shock is 30 j. I suppose it's set so high because he's a big man. That would explain why it is so painful and knocks him down. Everyone else's seems to have a first shock of about 17. jmrice@ipa.net


Barb, August 1, 1999 - Hi Jon, My father painlessly and quietly passed away in his favorite armchair, holding a cup of coffee in his hand, last Sunday morning. He had suffered from severe atherosclerosis, CHF, pulmonary fibrosis, COPD and chronic bronchitis. He had undergone 2 bypass surgeries; the most recent one was in January of 1998. Though none of the men on his side of the family had lived past age 48 (all died from massive coronaries), Dad made it to age 68. He was fortunate to have a fairly good quality of life up to the time of his death.
     My question is, do you know of any online support groups for family members who have lost loved ones from heart disease? I have tried to prepare myself for Dad's death for some time, but am having a rough time of things right now. We were very close and he was a much loved member of his community. Though I am so grateful for the way God eased Dad away from his mortal body, I miss him very much and feel almost cheated that I didn't get to say good-bye and how much I loved him one last time. blembkedvm@hotmail.com


Barbara S, August 1, 1999 - Hi everyone, I went with my Dad to his cardiologist appointment yesterday. The doc was a little crabby and short with us, so we couldn't ask too much. Maybe we should get a discount on days like that. <g> He decided to try to take my father off Coumadin for a couple of months to see if he feels any better. He did say that Aldactone is a diuretic and he had been prescribing it years ago when it was popular, so this was not a new thing for him to do. I never really gave a history here about my father, so please indulge me for a bit.
     At the age of 50, my father had a heart attack and a double bypass. This was the beginning of everything. Over the years he had been fine, with me not knowing very much since my mother was alive and they did their doctoring together. My father is now 78 years old and alone for the past 2 years. He has gone down somewhat since my mother's passing, hence my involvement. He has a-fib. He has had a pacemaker since August of 1998. He has decreased kidney function and chronic anemia. He has had many catheterizations and angioplasties the last 3 years. His daily list of drugs is: Lanoxin for pulse rate, Zaroxolyn for lowering blood pressure, nitro patch, baby aspirin, K-Dur, Demadex, Slow-mag for magnesium, Lopressor, Imdur, Trental, Capotin, Pravachol, Ambien and Aldactone. He has had problems with nose bleeds from December through April. He has been hospitalized 4 times since December. He was having trouble breathing, having angina, holding fluids, was tired all the time and his hemoglobin had been getting lower and lower until it got to 7.9, then they infused him with 2 units of red blood cells. Boy! It was like he was reborn after that! They were also trying to find out where he has bleeding from to make his hemoglobin so low. We've seen gastroenterologists and ear, throat and nose guys, not to mention his internist. So they have been playing with his meds, most recently the Coumadin. He is feeling a little better, but all this makes one aggravated. Like someone else here has said, it is such a fine line CHFers walk. Do one thing and something else pops up. It's just like car repair. Fix something and something else breaks down, doesn't it?
     I would love to hear from anyone else for whom this sounds familiar. Does anyone from the Detroit metro area know of a specialized CHF doc? I would be interested to consult with one. Thanks for letting me download. Have a great day. bskiver41@hotmail.com


John Len's August 1 reply to Jon's July 30, 1999 - Hi everybody, Jon, I also worked under the conditions you describe in your answer to Dotty M. In my case, it worked to my advantage because while my heart arteries were being blocked and shutting down, collaterals were opening up to take their place it. It bought me time. Also, since I had so much angina when active, it definitely let me know my limits. John. a_lenny6@hotmail.com


John Len, August 4, 1999 - Hi, On my last post, I will have to qualify my post. I wouldn't recommend it as standard fare for most heart patients; it's just that, like you, I had to make a living and was too mule-headed to know when to quit. Besides, as the owner of my company, I could hire out much of the work that I couldn't do, and there was no one to fire me for being too slow. Working for someone else, I wouldn't have lasted 2 days. John. a_lenny6@hotmail.com


Marion M, August 4, 1999 - Hi everyone, Since diet seems to be such an issue with us all these days, I wanted to share a recent experience that has worked wonders for us. My husband, Chuck, has CHF and various other problems due to chronic obesity. Believe me, he has tried every diet that has come along for the last 30 years. He is a wonderful dieter, follows the rules, loses tons of weight, then gains it back, plus some. A few months ago, his cardiologist took both my husband's hands in his and in a very gentle voice, told him that if he did not lose weight, he was going to die very, very soon. As you can imagine, we were feeling desperate. With his CHF and other problems, he was not a candidate for any stomach surgery or weight loss pills. That is when we found the "Weigh Down" workshops. This is a Bible-based, Jesus-centered, heart changing program. For the first time in years we are both losing weight, losing it slowly, sensibly and with total certainty and faith that it won't come back. I cannot recommend this program enough to anyone fighting the temptations of this world, be they food, alcohol, tobacco, depression, you name it. You can find information about the program on the Internet and the classes are being given in churchs, schools and doctor's offices all over the country. Bless you all, especially you, Jon. monty@lightspeed.net


Janie, August 4, 1999 - Dear Jon, I'm writing concerning my 76 year old mother. She is suffering from CHF, diabetes and kidney failure. Recently, in addition to the swollen feet and legs, her voice has become gravelly, weak and at times we can't even hear her. The doctor recently increased her Lasix to 120mg per day, up from 80mg. I was wondering if you or anyone else has any info on this voice change. Is it caused by fluid? I live 2 hours away and whenever I leave her, I'm afraid something will happen. I just want her to be comfortable. Thanks. Janie. janieg49@yahoo.com


Wendi, August 4, 1999 - Hi, I just wanted to tell my mother that I love her very much. She reads this site faithfully and I know it has helped her gain knowledge of her heart disease and has helped her find the answers and the encouragement she needs to get by on a day to day basis. It's frightening when you are given a time limit on your life with a disease so devastating that you don't know where to turn for answers. I take comfort, as does my mother, that this site is here for her. Love ya, Ma! Wendi. mwkurucz@bserv.com


Pam C, August 4, 1999 - Hi, My husband Rick, who has the really crummy doc, had his MUGA last week. He went in at his appointment time Monday to get his results only to find that the doc wasn't there! They had called the house but not his work so he took off early just to find that no one would tell him anything about his test. He really got mad (this was the third time this has happened) and demanded another doc at the clinic for his next appointment, which is now not until next week. Fortunately, he's feeling pretty good. He'll find out if he gets a job offer from his interview in Michigan sometime next week also.Hopefully, both will be good news. Pam C. woo_conley@hotmail.com
 
Jon's Note: Fingers crossed on the job!


Pearl S, August 4, 1999 - Hi Jon and Bill D, This is in response to your post and information that the BEST (bucindolol) trial was ending. Joe has been in this trial for a long time. After reading that it was coming to an end, I called his doctor in Rochester, New York, to find out if this was true. He said that it was but was more concerned as to where I got my information from. After I told him, he stated that it should not have been put on the site and that it would have been better if he had notified us so he could explain the options to us. I told him this was a wonderful place with a world of information and how much it has helped me to just read other people's posts and to know that you are not alone. I asked him where we went from here and he said he would probably put him on Coreg. I don't know how you got the information but I sure am glad that you did. It gave me a good feeling to know that we had the information as soon as it came out. I had a lot of confidence in this trial as I thought it had helped Joe survive longer, even without knowing if he had the real medicine or a placebo. He is still taking the pill until they call to set up an appointment. Thanks again and God bless. Pearl. pjstrange123@yahoo.com
 
Jon's Note: :-)


Ellen, August 5, 1999 - Hi everyone, I haven't posted for awhile. My 47 year old husband was diagnosed with CHF in March of 1998 after having 2 heart attacks in one week. He was in and out of the hospital from March to September. Needless to say, his heart damage is quite severe and he had no trouble being accepted for SSD. I took our youngest son, who is 14, for a sports physical yesterday because he wants to play football. We asked for a cardiac exam and the doctor agreed that was a good idea. As it turned out, his EKG came out abnormal and the GP said our son has a large heart. We will be taking him for an echocardiogram tomorrow morning and are hoping at his age that if there is a problem, it can be corrected or at least managed. Now if I can only convince our other 2 children, ages 19 and 21, to get checked out. Heart disease runs on my husband's side of the family. I will keep you posted. ESmith2673@aol.com


Tandy K, August 5, 1999 - Hi, I have a question. Everyone here posts their EF, yet Brandt's doctor never told me what his EF was until about 4 months after diagnosis. He goes by his fractional shortening number, which "in his opinion" is a better reference for how the heart is functioning. As I have searched for information for the last 16 months, I have found very little reference to fractional shortening and the family doctor we see didn't know what I was talking about. Does anybody know about this? Thanks and God bless. Tandy, Mom to Brandt- age 18 months with DCM, CHF, EF 35%, FS 15%. kephart@crosswind.net


Jon's August 5 reply to Tandy K's August 5, 1999 - Hi Tandy, This has come up before so now I know this one - I asked the docs. <G> This is like a "squeezability index" of the heart. There is a change in size between when the heart fills with blood - it is at its biggest - and when it contracts and forces the blood out into the body - it is at its smallest. The difference between the 2 sizes is the fractional shortening. This is how I understand it. I have also been told this measurement was very much used when all echocardiograms were 2-dimensional. Most are now done on more sophisticated equipment, so EF has become the more popular measurement to use. I hope this helps. Jon.


Ruthie A, August 5, 1999 - Hi, My mother has CHF and has been going downhill lately. She is on oxygen 24 hours a day, and her Lasix has been increased to 200mg a day. She saw her cardiologist yesterday, who said she would need to be on oxygen the rest of her life. Then he said she only had 6 months to a year left, most likely 6 months. I could tell he was not a CHF specialist: The doctor told my mother there was nothing more he could do for her and that her general physician would be taking over all of her cardiac care. If she was still alive in a year, she should come to see him but not before. Does that sound to you like he just doesn't want to mess with a sick, old lady? It does to me! My mom has resigned herself to a very short life span. That may be so but it seems a crime to me to just give up on her like that! Man, am I frustrated but there is nothing I can do, so I just have to live with it. Ruthie A. rlaba@preferred.com


Jon's August 5 reply to Ruthie A's August 5, 1999 - Hi Ruthie, That really does stink. He's either ignorant in his own field or he's just plain heartless. Either way, the smell is bad, especially after waiting so long to get your mom properly treated in the first place. My sympathies are with you. Hang in there! Jon


Amy Jo, August 5, 1999 - Hi, A note of good news: My 88 year old husband has been home just one week today after his 50 days in the hospital (CHF,CAD, acute renal failure, pneumonia) and now like Lazarus, he is coming back to life. His meds have been greatly reduced and we are being very, very careful about salt. His edema is down and although he is very short of breath at times, his endurance is slowly increasing. The home health agency (OT, PT, nursing) is wonderful. Thank you for your notes of encouragement. Amyjo1350@aol.com


Karen D, August 6, 1999 - Hi, I haven't posted in awhile but wanted to thank Jon for the Aldactone information. I copied it, sent it and a note to Bill's doctor, and asked him if he thought Bill would benefit from adding it to his medications. Today his office called to have us pick up the prescription, along with an order for a blood test in 10 days. I also want to update you on Bill's condition. He took a Vo2max test at the transplant center in January and scored 17.3. He had another test last month and had dropped to 16.2. According to his transplant coordinator, they will not activate him until he hits 15. I asked whether it is possible to go back up but got the impression that it usually doesn't happen that way.
     Pearl, I haven't heard from you in awhile. I hope Joe's doctor understood what you were telling him about this support site. Bill's transplant cardiologist in Tampa sometimes acts as if what we learn on the Internet is suspicious but I think that's because she isn't comfortable yet with computers and hasn't spent any time on the Net. Jon, I have printed out whole sections of The Manual to show her that the information on this site is reliable.
     Dina, you mentioned John's ICD settings. Bill's hasn't gone off yet but the next time we see his doctor, I'll ask what his is set at. I hope everyone's weather is cooling off some. We live in Florida and are used to heat and humidity but this summer has been unbelievable even for Florida! Karen Deitemeyer. deitemey@kua.net


Pat, August 6, 1999 - Hi, I'm a first-time poster. I have read this site for many months and of course, read The Manual. My husband was hospitalized with CHF 4 years ago and 6 months later with arrhythmia. You know the drill: diuretics, Ace inhibitors, heart meds to control rhythm, etc. After the first year, we reached an impasse. It was apparent that he was not going to change his lifestyle; quit smoking, lose weight, exercise, limit salt intake and so on. He just simply refused. He was determined to continue his life as he always had. Finally I decided to let him, without further nagging from me. We have pretty much lived in that impasse for the past 3 years. He spends a lot of time in or on his bed and occasionally he has spurts where he will go outside and do something outrageous. If that is what he wants to do, that is ok. It is his life and he can live it as he chooses. I take care of him and help him as best I can, without nagging. I came to a point where I had to accept that he was most likely going to die from this and die a whole lot younger than he should. He is currently 53.
     Like Jon said in The Manual, it is hard to get straight answers out of the docs and most answers have come from this site. I had to go see our PCP last week. He asked about my husband as he has not seen him in awhile. Generally he sees the heart or lung specialist. I told him the same. A little activity like a shower causes him shortness of breath, and so does any other activity unless he is on oxygen. The respiratory therapist takes his blood oxygen and his resting is 97. After walking 30 feet, it is 82. His heart rate is 132. broken_wing@hotmail.com


Ben B's August 6 reply to Tandy K's August 5, 1999 - Hi, It seems that for children and very young people, doctors prefer to use this "fractional shortening." As Jon said, it is how the heart muscle changes as it contracts, like a muscle flexing. To me it makes sense because it seems like more of a real measurement of the actual heart muscle itself, rather than the afterload and other factors. However, I have noticed from looking at my old echo reports that if my ejection fraction goes up a certain percent, my fractional shortening goes about the same percent, so it is even possible the echo machine uses one measurement to calculate the other. This stuff is interesting. I just wish it didn't have to happen to people, especially young kids. Good luck. bdbrinkman@juno.com


Carolyn B, August 6, 1999 - Greetings, Here's an update on my younger daughter. She saw the cardiologist yesterday. Her echo is unchanged. He increased her Lisinopril because of her now adult size. He did restrict her from weightlifting, which did not make her happy. She only lifts in PE class. It makes sense but I would like any input on this. littleone@integrityonline.com


Ellen, August 6, 1999 - Hi, I just want to thank everyone who has e-mailed me regarding my son Jonathan. Thank you all for your prayers and support. We took him for his echo yesterday and will now have to wait until Monday or Tuesday before we find out what the results are. They said they had to send the test to a town about an hour's drive from here to have it interpreted by a pediatric cardiologist. Although I'm not trying to be alarmed, I guess with what I went through last year with my husband, I'm worried and have not slept too well this week, and now have to wait until early next week. I'll keep you posted. Thanks again, I appreciate the prayers. ESmith2673@aol.com


Marie, August 6, 1999 - Hi, I am typing this mostly out of frustration. My sweet mother-in-law has CHF and has been given 4 years to live. My husband and the rest of the family (including my mother-in-law) have accepted the news and seem to want to sit back until something bad happens. No one questions the medication she's given or anything else. On the other hand, I want to find out all I can and keep her informed. I guess I need to know if I'm overstepping my boundaries. mcintyr3@telusplanet.net


Pearl, August 9, 1999 - Hi, I am going to try to post some of the events that happen during Joe's care with hospice. As I stated in a previous post, that this is the first time in years that he has not suffered with pain in his legs. His problem with them has been vascular disease and poor circulation from his many problems. Although he has no leg pain, he now suffers severe cramping from constipation caused by the MS Cotin, used for the pain, and they had to put him on Senkot, up to 5 pills a day, which makes a total of 27 pills per day, along with Milk of Magnesia. He had severe pain today in his stomach and has lost his appetite. He is losing weight and his stomach is extended and tender. I called the nurse to come in today and she is taking him off the Senkot to see if that will ease the cramping and pain he has been having. We have fought a long and hard battle, and I pray to God that he can somehow keep up his will to continue fighting this. Our 2 granddaughters, ages 5 and 6, come over every day and sing "You Are My Sunshine" to him. The social worker from hospice has started counseling our granddaughters on losing their "Papa." I keep hoping everyday that something new will come along that will help. Joe stated one day, I am going to concerate on living, not on dying. We take one day at time and pray for a tomorrow. Pray for us and God bless you all. Pearl. pjstrange123@yahoo.com


Raquel's August 9 reply to Pat's August 6, 1999 - Hi, I've just read your message. I too am fustrated at the fact that my husband was diagnosed with CHF and advanced chronic emphysema in July, 1999. Dave is 60 years old and had never taken any time off from work. This man is a true workaholic. Now that he has been placed on permanent disability due to his condition, it has been a nightmare. Not a day goes by that I don't thank God that because of Dave's breathing, we sleep in our recliners downstairs. I'm not about to leave him by himself. However, here is the slight problem: He complains, complains and complains about the most minute issues! He did quit smoking on July 2 when I rushed him to the ER because he was drowning in his own fluids. He isn't a drinker but we have a legal battle going with the mortgage company and all I seem to hear from him is, "If this doesn't get straightened out, I'm going back to work even if it kills me." Well, my question is, is this normal? Or am I taking this personally? Help! marklandfamily@dconn.com


Wendy, August 9, 1999 - Hi, My husband was diagnosed with DCM on a routine physical back in February of 1999. His EF from an echo was 35% but he had no symptoms and still does not have any symptoms. He was given an angiogram and his EF was estimated at 50%+ and his arteries were clear. We were told it probably was not DCM and myocarditis on the mend. Three months later, he had another echo on July 19th and his EF is back down to 38%. My husband has had strep throat 5 times in the past year. The doctors and everyone else don't seem to listen to me, but I'm wondering if either the strep or antibiotics to treat the strep might play a role in this. Incidentally, he has agreed to have those tonsils yanked this month! The 2 main things that happened from his 50% EF and the "he is improving" prognosis to the 38% EF is that he had strep on vacation in Florida and his father was diagnosed with terminal cancer. Sadly, my father-in-law passed away on 7/27/99. I'm writing all of this to show that there certainly has been considerable stress on my husband. Does anyone have any words of wisdom, encouragement, or has this happened to anyone else? He is not a smoker and has not touched alcohol since February. Before that, he'd have a few beers on the weekend but never drank excessively. He is 35. We're told it was probably caused by a virus. I hope to hear from you and thank you in advance! Wendy. Pittfarm@aol.com


David, August 10, 1999 - Hi, I'm seeking some advice for my mother, who had a serious heart attack 2 weeks ago. She's now home, on medications, to begin cardiac rehabilitation in another week. The issues she's dealing with right now appear to be very psychological in origin. She's afraid all the time, she says, afraid of dying. She's afraid to go to sleep. Her heart attack happened in her sleep. She's very anxious. Are there any books that discuss this aspect of heart attack recovery? I'd appreciate any advice or pointers in the direction of more information. Thanks. David. appell@nasw.org


Pearl S' August 10 reply to Marie's August 6, 1999 - Hi Marie, I had my husband to Pittsburg, Pennsylvania in 1995 to be evaluated for a heart transplant. They decided he was not in good enough condition to undergo a heart transplant. When we left, they gave him 6 months to live. Then we went to Rochester, New York for medical trials. On one of his visits to Rochester in 1996, he was having CHF and was admitted. The doctor said he had 6 months to live. These were the very best doctors you could have in our part of the country. The point being that doctors should not play God and tell you that someone is going to die unless they are !00% sure, and how can they be? If they can predict that someone is going to die in 4 years, they are a wonder to the medical society. Please explore everything you can to help your mother-in-law. Don't wait, start now, and you are at the best place in the world to begin. I only wish I had had this site to guide me when Joe first started having problems. Good luck to you both and may God be with you. Pearl. pjstrange123@yahoo.com


Pat's August 10 reply to Raquel's August 9, 1999 - Hi Raquel, I think that we as caregivers have to sit back and try to "feel" the reality of what our spouses are facing. I don't think we can possibly imagine the fear and dread they must feel concerning where this road is taking them, like it or not. Plus the fact of everyday life so different than it had been before. That is why I said I had to come to the place that this was hubby's life and I had to let him lead it, however he chooses. We cannot do any of this for them. All we can do is attempt to help when we can. Different people handle various stresses differently. Some go with it and say ok, in that case I am going to make the best of every day I have left. Others are determined to continue on as before and refuse to face their own reality and thus they are in a constant battle, not only with themselves, but with those of us around them who have to carry the extra load. It is not easy, I know, but it is one of those things that just is. There really isn't anything we can do about it other than, like I said, be there when they need us. Wishing you all a good day and God bless. Pat. broken_wing_@hotmail.com


Dauna, August 10, 1999 - Hi, My mother has CHF. She is having panic attacks or something similar. She says it feels like her skin is crawling and she's agitated and restless. What's this all about? What can be done? Her small town doc gave her yet another pill to take. I don't know what it is or if it'll help. Has anyone else had experience with this? towndog@byelectric.com


Jon's August 10 reply to Dauna's August 10, 1999 - Hi Dauna, This sounds like a drug reaction or interaction. You need to have a pharmacist check her meds one against the other - all of them - to see if she is getting a drug interaction that could harm her. In the meantime, she should be checked carefully by a doctor for a sensitivity to, or even mild allergy to any of her meds. Adding a pill isn't a solution unless the cause has been exactly identified and the new med is specifically designed to treat it. Just calling it an anxiety attack or whatever and giving a pill to calm her down is a really, really bad idea. If that's her doctor's typical treatment plan, she should very seriously consider getting a second opinion on her current treatment. After all, this is her life, and casual treatment should not be tolerated. Jon.


Susan ?, August 10, 1999 - Hi, My 73 year old father has CHF and he suffers from really bad insomnia. He's on several different medications and I am looking for something to help make him sleep. He is still working every day and many nights only gets 2 hours of sleep. Any suggestions would be appreciated. I am ready to try anything, alternative or conventional.Thanks. shuntbradford@mcmail.stlcc.cc.mo.us


Beryle B, August 10, 1999 - Hi, This is my first time on the Web I am in NSW Australia. I have an 89 year old mum who keeps on having heart failure. I am her caregiver and have just come home from the hospital for the third time in a month. She has shortness of breath, loss of appetite and is on Lasix. I guess at 89, one is to expect the downhill slide. I want her to have some dignity left. The doctor says put her in a nursing home but I have promised her I wouldn't. Tonight I feel there must be someone out there who as a caregiver feels as helpless as me. Brooksie@ozdocs.com.au


Susan ?, August 10, 1999 - Hi, My husband, age 59, was diagnosed with cardiomyopathy and CHF 5 months ago. He is on 12.5mg Coreg twice daily, 40mg Lasix daily, 5mg Altace twice daily, 0.25mg Lanoxin daily, and 20mg Mevacor daily. He is a non-smoker as of 14 years ago, as a result of a heart attack and a non-drinker as of 5 months ago. He is very strong willed. He stopped each as soon as his doctor advised him to do so. He has improved greatly since our trip to the doctor 5 months ago, with regular visits since. He had a thallium stress test and the doctor advised that his heart was unable to undergo a heart catheterization. His EF was 18% five months ago. He had another echocardiogram a week ago, but we do not know the results yet because his doctor went on vacation. We will get the results later this week. The nurse did call us and say there was a slight improvement, but she didn't know how much and would have the doctor call us when he returned. My husband's main concern is the weakness in his legs. He can't seem to shake the leg weakness. Is this common with his condition? We have mentioned it to his doctor, but he just brushed it aside. The leg weakness is not in the calf area but the thigh area, just above the knees. Any advice would be appreciated. Susan. svaik@yahoo.com


Jon, August 19, 1999 - Hi everyone, Sorry to be away so long but I've been too sick to sit and type until tonight. I am still way behind and way under speed, so catching up will take me awhile. Jon.


Marsha, August 19, 1999 - Hi, This site is exactly what I have been looking for. Reading all the posts, I see my father's situation. My father will be 65 in October and has been diagnosed with CHF. I noticed some of you mentioned a class of CHF. I don't know what class dad is. How do I find that out? My dad had a heart cath in June. I was there for that. The doctor said the heart muscle itself was damaged and the arteries were clogged so badly that angioplasty was not an option. The bottom line is that his heart is working at only 10% capacity. To complicate matters, he is also a diabetic. He is on 80mg of Lasix, Topsol, Isobroide, saptoul and Lanoxin, just to name a few. Mom says the pharmacist says these are very strong drugs and not meant for long-term use. The doctor said that 80mg Lasix was the top dosage he would give dad. I noticed other people said their loved ones are on 120 and 200mg. Is the reason the doctor doesn't want more than 80mg because dad is a diabetic and diuretics are hard on diabetics? fly26n@aol.com


Pam C, August 19, 1999 - Hi, I went to the dox with my hubby (Rick) Tuesday to get his MUGA results. It was a different doc in the same center, different as night and day. This guy talked, answered questions and treated us as if we actually had brains. We found out that there's no ischemia, therfore no blockage, and his EF is up to 40%. His BP is staying down too. It was 120/80 on Tuesday. The doc told him that if he lost weight, he could add 10 years to his life. Rick was so ecstatic! He hadn't even thought he had 10 years, let alone be able to add 10. Now he's very encouraged and motivated. I was supposed to get a stress test done the same day but it got cancelled when the tech saw "abnormal t-waves" before I even got on the treadmill. Does anyone know what this means on an ECG? They've sceduled me for a MUGA on the 25th. Jon, sorry you've been feeling poorly but glad about the other things that are going well. Pam C. woo_conley@hotmail.com


Dollie Knoerr, August 19, 1999 - Hi, We need help! My father-in-law, age 68, is in severe CHF. Either we are not getting good info from the doctors or perhaps we don't know the right questions to ask. He has had diabetes and high BP for 30+ years, and asthma all his life. He had a heart attack in 1980, bypass surgery in 1994, and a pacemaker a year ago. He only has one kidney and it only functions at 24%. He was hospitalized in November and at that time we were told he probably had a year to live, maybe two. We took him to the emergency room a month ago and the doctors said it was a very close call. They gave him dopamine through a catheter in his neck, which really helped. As soon as they weaned him off it, he seemed to get steadily worse, although they said all his tests were okay. He had been on Lasix but they changed him to Demadex ("monster doses7quot; they said) and added Aldactone. We have had to take him back to the hospital twice since then.
     His major complaints are that he can't sleep; that he is so nervous, jittery and shaky that he feels like he is going to jump out of his skin, and that he feels he can't breathe. Yet, when we take him to the hospital, his oxygen saturation levels are Ok. This last time in the hospital, they did not do anything for him - not even give him his medicine and he felt better. He said the nervousness was gone and he felt he could breathe better. The doctor said he has to have the medicine. They are giving him sleeping pills and valium. His skin is yellow. Doctors have said he has liver failure/liver congestion. He has edema in his legs and sometimes his stomach bloats. Doctors have termed it like "walking the top of a fence" trying to keep fluid off and not dehydrate him. During the first hospitalization this time around, they said he was retaining water "in the core." He seems to be keeping fluid in his lungs constantly. The crackling gets better and worse but never goes away.
     Here are my questions: Does this sound like end-stage CHF? We are all alarmed but doctors will only say they don't know how much longer he has: a week, a month, maybe 3, maybe 6, maybe a year or two. They have used the term "severe CHF." Why does he feel like he can't breathe when his oxygen levels are good? Why is he so nervous and jittery? Is this from the medicine or part of CHF? He is miserable. He says he can't stay in the house and we have been getting him out and driving him around for an hour at a time. The doctors have not told us what to expect. It this all part of the disease? They have said the only solution is a heart/kidney transplant and he is not a candidate for that. One doctor told me that it his attitude that is keeping him alive and that anyone else in his condition would be gone but he is very tired now and says he has no strength. He told his wife today that he didn't think he was going to make it.
     By the way, the week before this latest started, my mother-in-law had her hip replaced and has been confined to a walker all this time. He is so miserable, tired and weak. We are all worn out and don't know what to do. I'm sorry this is so disjointed. I hope it makes sense. It was such a relief to find this site. I have read The Manual and it helped answer some questions. Any further help you can give us would be greatly appreciated. KMKnoerr@aol.com


Ellen Smith, August 19, 1999 - Great news! My son Jonathon is okay. We got the results from his echocardiogram today and they said his heart is normal. I'm not sure why the GP thought there was a problem but we will question it tomorrow when we take Jonathon back to complete the physical. I also want to say something in response to Pat and Raquel: I know what you are going through as far as your husbands not sticking to the plan. My husband has CHF in addition to being at risk of sudden cardiac death and he refuses to follow the treatment plan. He takes his medicines all the time, which I do give him credit for but he refuses to stick to the diet and just eats like there is no tomorrow. He is short of breath most of the time, never weighs himself, doesn't follow his diet (and blames me for it) and has gained a lot of weight in the past 6 months. He was admitted to the hospital about a month ago because they thought he was holding too much fluid. The next day they released him and told him it was just him, too much fat. I use to nag him but realized I was more upset than he was, so what is the point? He told me that I was not his mother and that did it! I cook low-fat, low-sodium meals but what he eats when I'm at work is his problem. Plus, he is a junk food junkie and absolutely refuses to have anything to do with vegetables or fruit. I can't change him but I thought with all that he went through last year (12 weeks in hospital) that maybe he would want to change his lifestyle. I was wrong. ESmith2673@aol.com


Neil, August 19, 1999 - Hi all, I found your site, which is an excellent collection of information, after my 88 year old father was hospitalized with CHF. He had no signs of any heart problem until about 6-8 weeks ago. He has had about 4 attacks of pulmonary edema over the last 6 weeks, and has been in and out of the hospital. All of his heart examinations, stress tests and echocardiograms showed no heart problems until about 6 weeks ago. He entered a hospital the first time for tests on his colon, as he had a complaint of a pain in his side after he ate and which would be relieved upon a bowel movement. He returned there 3 times because of fluid on the lungs.
     My sister, brother and I know we need another opinion. Has anyone suggestions for CHF specialist in the Pittsburgh area for a referral? We wondered if anyone knew of a way to find one. Also, I was wondering where the best teaching hospitals with CHF specialists are in the USA. I've heard that there is CHF program at UCLA Medical School, which my uncle was part of. Any suggestions? I think Jon's site is a great example of the power of the Web. All the messages I've read show what people can do when they share information. Very best regards. neilro@anet-stl.com


Virginia R, August 20, 1999 - Hi everyone, I haven't posted in a long time due to my son's wedding and Dad's "stableness." At this very moment, Dad (Mike Walton - mcwalton@webtv.net) is having an electrophysiology study at St. Paul's in Dallas. Since his heart cath in June, he's been ok with the exception of black out spells last week. He was hospitalized at his local hospital but they could not find a reason for the blacking out. His CHF clinic nurse thought it was possibly arrhythmia. He went back to Dallas 8-11 and had a MUGA and sonogram to check on his blood clot on the left side of his heart. We've not gotten results back on that but they also felt that he was dehydrated and needed this EPS due to something they saw during the tests. I'm sorry I don't have much information because I'm about 250 miles away from him right now. At any rate, I was told he could come out with a pacemaker. He also has a bad infection in his great toe. He's on antibiotics for that. There's actually a hole in the bottom of his toe. The cardiovascular surgeon is optimistic though, because he has a good pulse and good circulation still. He's a diabetic - brittle, age 59, with CHF, cardiomyopathy and hypothyroid. His EF was 34%, which is a little better than before. giniroberts@hotmail.com


Renee, August 20, 1999 - Hi, My name is Renee and my husband is 41 years old. He has CHF and his EF is 15%. We have beeen making a lot of trips to the hospital for chest pain. I am so tired of hearing that they are not sure why he is having so much pain. They just keep giving him a lot of pain meds. He is on so many meds I really worry about this. The meds are 25mg Atenolol, 25mg spironolactone, 0.25mg Digoxin, 20mg lisinopril, 100mg wellbutin, 10mg Buspar and 40mg Lasix as needed. I am calling a pain clinic today and see what they can do to help manage his pain but I am just really frustated with the fact that they can't explain the pain. A friend whose son has CHF said the pain could be because the heart is so enlarged that it is pressing against other organs. Could this be true? His doctor just kind of shrugged when I said this. He has a habit of blowing off my questions. rsusanno@mediaone.com


Jon's August 20 reply to Renee's August 20, 1999 - Hi Renee, I know personally how difficult it is to get info from a doctor who doesn't volunteer it right off the bat but this chest pain thing really is as important as you think it is. If it is caused by coronary artery disease, its extent needs to be thoroughly investigated, perhaps by cath. If it has another cause, other treatments may exist. He may need a nitro patch or another form of vasodilator. Coreg is a vasodilator as well as a beta-blocker and a switch from atenolol to Coreg might help. Anyhow, really push for cause-finding tests and if you can't get any answers, please seriously consider a second opinion. Pain killers are great if there is no way to eliminate the pain's cause, but without knowing what causes the pain, masking it is not helping the real problem and it might get worse. Jon.


Phyllis E, August 20, 1999 - Hi, This is an update on my 51 year old husband. Harry has lost 75lbs on the Atkins' diet. Last October, he was in terrible shape weighing 322lbs with serious CHF and cardiomyopathy. It is amazing how much better he is. Even though he is still smoking and drinking heavily, still working full time and not exercising. He takes all his meds. He feels better than I do and I am in good health. Maybe his heart problems stemmed from his weight. I hope he changes the rest of his vices. I keep my mouth shut because I know it will only make things worse. If he would change because I made him, all that would happen is he would resent me. I feel so bad for the ones who are suffering and making life miserable for their loved ones. When I am in pain, I get self-absorbed and when I feel better, I can think of others much better. Phyllis E. PErnsberge@aol.com


Sherry Z, August 20, 1999 - Hello, My name is Sherry. This is the first time I am writing. My mother has CHF and it has been getting worse and worse lately. She is 73 years old, I am 35. I have been reading the messages posted by people with CHF and have learned a great deal. Mom has diabetes, CHF and arthritis. This past January, she got pneumonia and ended up on a ventilator for 3 weeks. No one thought she would make it but she did. She was in the hospital for 4 months. Since then there have been about 3 hospital visits for her water buildup and heart failure. I would really appreciate hearing from other people whose relatives are going through this. I only have e-mail at work for the time being. I have so many questions for you. For example, I never hear about Zaroxlyn from anyone. That is what mom's cardiologist gives her every once in a while in addition to Lasix. Anyway, thank you all for being out there. I really hope someone writes back to me. szaudere@milbank.com


Jon's August 20 reply to Sherry Z's August 20, 1999 - Hi Sherry, Welcome to Jon's Place. You can use the site search on the Archives page to look for specific topics lke zaroxolyn. It is sort of a "Lasix-booster" and is often used with Lasix instead of moving to a stronger diuretic. Jon.


Marsha S, August 20, 1999 - Hi, I posted a question a couple of days ago about my dad, who has CHF. I wrote you before I read The Manual. One question I had after reading it was about doctors who specialize in CHF. I live in Lexington, Kentucky. If you or anyone else knows a CHF specialist in Lexington, Kentucky, please e-mail me! If not, what is the best way to look for a doctor that specializes in CHF? Thanks for answering my questions. Your site is great. My parents live in another town and are not on the WWW. I printed The Manual and faxed it to them. It was a big help. fly26n@aol.com


Ginny, August 20, 1999 - Hi, My husband was diagnosed with CAD and CHF. His heart is functioning at 15% and his kidneys at 50%. He is diabetic and 83 years old. He's rarely been sick and he played golf in May. Then we got that awful hot spell and everything went downhill. Two toes, one on each foot, have gangrene. His temper is terrible and I cry a lot. Hospice is coming starting Monday, so the visiting nurse signed off today. So this weekend I'm on my own. He's on a low fat, low sodium, diabetic, fluid restricted, low protein diet. He doesn't like anything I fix. Today every time he tries to eat something, he has diarrhea. What am I looking at in the future? Do we have one? ginny@dundee.net


Rita's August 21 reply to Wendy's August 9, 1999 - Hi, I read your post. My son is 34 and was found to have CHF 2 years ago, after being treated for flu-like systems for 3 weeks. His CHF was created by a virus also. He was stressed in that he was going through a divorce. I guess I'm confused about what DCM is. I recently received an e-mail that said he was DCM/CHF and I took it to mean divorced Christian male. Boy, do I feel stupid. Quirki, if you see this, please send me your complete e-mail address.
     I still don't understand all this EF stuff. Donnie's EF is at a 10 and has been for almost 2 years but he can do so much more than those with a much higher EF. We went to a hot air balloon fest 2 nights ago and he walked around 2 miles both ways. A large part of it was across rugged pasture land. He didn't have any complaints except some aching in his groin area. I actually did more complaining than he did. He mows the lawn when it's cool enough and the humidity is down. Jon, could you enlighten me a little on why such a low EF and yet Donnie seems to tolerate so much?
     For all those reading, I agree with Jon. Doctors should not give you a time frame. I have a friend whose 36 year old sister-in-law was given 3 to 6 months and put on the transplant list in May of 1998. She is much stronger over a year later and her status for the list has been changed from a 1 to a 2. Everyone take care and God bless. Rita. ritajw@aol.com


Jon's August 21 reply to Rita's August 21, 1999 - Hi Rita, First, take a read on these and let me know if they helped: (let them load!)
Jon's 8-4 reply to Karen K's 8-4
Jon's 8-1 reply to Margie F's 8-1
Jon 5-20
The Manual
Jon's 5-13 reply to Ann C's 5-12
     I just went through the "headers" at the top of some of the more recent Archives pages and looked for the term "EF." You can also find tons of posts about the subject by searching just the Archives using the search engine at the Archives page. If you're unsure how to make it search just The Archives, e-mail me. If you don't find an answer in there somewhere, let me know. I'm sort of being stingy with answers until I get caught up from my recent absence, but will be happy to reply in detail tomorrow if you can't find what you need. :-) Jon.


Rita, August 21, 1999 - Hi, Is anyone familiar with a heart failure specialist in the Oklahoma City area? ritajw@aol.com


Carolyn B, August 21, 1999 - Yeah! My older daughter turned 15 last Monday. She has DCM. We celebrated with a trip to the DMV and a parking lot driving lesson. We both did well! An update on my younger daughter: went to the doctor today; another round of Augmentin but this time she will be prescribed the right dose! She is still battling a sinus infection.
     Does anyone have any information beyond the literature on Ativan? She had a CVA 2 years ago and gets agitated at night and is wearing her caregiver out. This is the last resort. Once she has worn everyone out, she will have to go to a care center. Any input helpful. littleone@integrityonline.com


Machael, August 21, 1999 - Hi, My dad has CHF and COPD. He is trying to lose weight and is wondering if any one has taken Xenical or knows someone with any information about it. Anything would be great! Thanks for your time. Machael. leinweber@hughestech.net


Jon's August 21 reply to Marsha's August 19, 1999 - Hi Marsha, Heart class is defined here. Some of the drugs you mention, while potent, are often used for long-term chronic illness. Lanoxin and Lasix are normal long-term CHF drugs. I'm not sure about the others due to spelling but I assume one is a vasodilator like Isordil and the other is Toprol, which is a beta-blocker. These are common long-term drugs for CHFers also. I don't know why his doctor wants to use an 80mg ceiling for Lasix. 80mg twice a day is considered a moderate to moderately high dose but it can be used in doses up 160mg twice a day in most patients. It's a question that needs an answer from his doctor. Jon.


Jon's August 21 reply to Pam C's August 19, 1999 - Here's a little info on t-waves but keep in mind this is out of my normal range of research, so to speak: A t-wave on an ECG shows repolarization of heart tissue as it gets ready for the next electrical impulse (heartbeat). Frequently, ECGs are interpreted as having "non-specific t-wave abnormalities" but this can mean different things and your doctor needs to read your test results in light of your individual health problems to know for sure what it means and if it is actually a problem. Meds can also cause subtle ECG changes, so your cardiologist will have to make the call. Sorry I can't be more help. Jon.


Jon's August 21 reply to Dollie Knoerr's August 19, 1999 - Hi Dolly, Are you any relation to the PKA fighter? On topic, that jittery feeling sounds like a reaction to a drug or an interaction between 2 of his drugs. I'm not a doctor but that would be my first guess. A doctor should have a long talk with a pharmacist to thoroughly check out the possibility. If that's what it is, there are very strong odds that it can be solved by a slight change in meds or maybe just in the dosage of a med.
     CHF is a collection of symptoms, not a disease (see The Manual) and the severity of it is classified by functional heart class, also defined in The Manual. End-stage CHF is severe CHF that is not expected to get any better between now and the death of the patient - at least, that is the way I understand it. So only your doctors can really distinguish between "severe" CHF and "end-stage" CHF. Be frank with them and see what they say. Keep in mind that even as sick as your father in law is, it is very difficult for a doctor to know when one of us is going to die. CHF is a very up and down illness but they should be able to give you some rough idea by now.
     Difficulty breathing can be caused by the building up of fluid in the lungs. This is explained in The Manual. Your comments on lung sounds point to congestion. Remember that when your lungs fill with fluid, there is less room in your lungs for oxygen transfer to happen. The liver can swell from holding fluids also, leaving too little space around the lungs for them to properly expand, which can make breathing really hard. As his heart gets weaker, it may also enlarge, once again decreasing the amount of space around his lungs, making it even tougher to breathe. Another cause is a serious drop in the heart's output. That can cause severe shortness of breath even when there is no obvious fluid congestion in the lungs (yet). Let fly with any questions you have and we'll do the best we can to answer them. Jon.


Jon's August 21 reply to Ellen Smith's August 19, 1999 - Hi Ellen, Great news about your son! Jon.


Rachel Needham, August 22, 1999 - Hi, I have not been a regular visitor for at least a year but lately I have visited often. I don't know what to think. Everyone's future is unclear but for a CHFer, it is more dubious. My husband was diagnosed with CHF several years ago, with no active signs. Last year, changes occured and his EF was 25%. He did not let this get him down. Although he could not do extremely active things, he continued working 40-60 hours a week. He recently had a test with his EF coming in at 21%. I have noticed changes. He can't walk up 4 steps of stairs without resting, he naps often, and is worried he won't qualify for Disability. Last year he refused to apply. This year he is worried he won't qualify.
     Hmmm, makes me wonder. Am I in denial here? He is 47 years old, with a family history of heart problems. He has had 3 angioplasties and a 5-graft bypass in the last 7 years. He had a defibrillator inserted 3 years ago. We live in the Pacific Northwest and the summer has been very mild, luckily. Last year, he could withstand 78° outside for a short period of time. This year, 73° is about it; any hotter and he is wiped out. He has 2 heart doctors. He takes Avapro, digoxin, Demadex, potassium, cardizem, and insobordine. He recently has been having chest pain. Several people in recent months have stated that he looks tired.
     I am about to scream. I don't want my future to change. I like my life. I am 32 years old, with 3 kids. I am very happy. Is there nothing else to do? Transplant? When does that occur? Where is this list? How do you get on it? Also, his heart has enlarged so much that I can sometimes see his shirt go up and down slightly as it beats. His docs are supposedly the best. I guess I just needed to vent. There is nothing anyone can do here, except be supportive. That is a jewel in itself. I used to think we had ages. "Hey, just because one has CHF does not mean the curtain is closing. Just live life, with a few adjustments. A person may still have 10+ years." I don't think that anymore. rchlrl@aol.com


Jill's August 25 reply to Rachel Needham's August 22, 1999 - Hi Rachel, Venting here is a great way to get your fears into the open and gain valuable information from others who have been there. I live in the NW and when Jack was at his worst (15% EF) the heat would wipe him out completely, so I understand. What I want to convey most to you is that if your husband takes an active role in slowing down and taking care of his heart, you will all benefit but if he keeps working so hard that picture can change radically. Seek out information on Disability now. None of it is an easy process but it is worth it. You can read Jack's Bio on the Who's Who page and if you do, keep in mind he is now normal. He is off all meds except one for blood pressure which he may be taken off soon. In just a few words, I can say all is back to normal, but it was a day by day process and we never knew how things would turn out so it's best to be prepared for anything. I think Jon has a page on heart transplants and there are a few on the other forum who have gone through it. Keep writting. Jill. maddjak@jps.net


Jon's August 25 reply to Rachel Needham's August 22, 1999 - Hi Rachel, We all like security in our lives, especially when we have children. Still, losing that delightful rut most of us like to stay in doesn't prevent a family from becoming stronger when hard times hit. One way to take some control over your lives is to research his illness, treatments and options down the road, starting right now. Serious study will answer many of your questions, allow you to help your children understand what is happening, and its consequences, and also enable you to support your husband in a way most caregivers cannot. Don't forget that he didn't want his future changed either - so to speak - and he has to make a massive set of adjustments himself. You guys can really help each other get through these changes if you talk honestly with one another and learn all you can.
     I would suggest immediately applying for Disability. The process can be long so it is not wise to wait until the last moment to start filling out papers. See my Social Security Disability page for starters and follow some of the links there for more great info.
     A well thought out, structured exercise plan is a good thing for CHFers. It keeps our bodies' skeletal muscle from losing its tone as fast, and this allows us a higher quality of life for a longer period of time. Ask his cardiologist to put him in a cardiac rehab program to get him started. That will "train" him in how to get a good workout without placing himself in danger from over-exerting his heart. Structured exercise done on a regular schedule will help his body make full use of the oxygen that his heart can deliver. That will greatly enhance his overall health and sense of manliness. Regular exercise also helps keep cholesterol levels low, which helps prevent future blockages.
     Have a read at my Transplant page also. That will give you some of the basics about the process, some of the risks involved and you can use the links there to find more excellent information. You can also search the bios at Who's Who to find others in similar situations or who have had a heart transplant. Make full use of this site and you'll find lots of pointers to info and people who can help you. And don't forget, Jesus Christ is always on-call and he doesn't mind prayers, regardless of the time of day. :-) Jon.


Jon, August 25, 1999 - Hi everyone, I use a free forms server to get posts from the form at the bottom of this page to me, so I can then put them up for everyone to read. The service I use is having a few technical difficulties right now but I think they will be fixed soon. So if you haven't been able to get a post to go through, please be patient. Until it is fixed, please feel free to send me any messages you want posted via e-mail. Just be sure to tell me that you want them posted on this forum. Jon.


Loretta, August 25, 1999 - Hi, My husband, age 54, has just been told that 4 of his 5 bypass grafts are 100% closed. He has been told another surgery carries greater risk than the inevitable heart attack. He was told to take an aspirin, walk and eat right. I know there are some new treatments out there to stimulate blood vessel formation and I have heard about beta-blockers being great. What experience or suggestions would you folks have? Thanks! lcriner@runet.edu


Ann Marie K, August 28, 1999 - Hi Jon, I'm glad you're feeling better. I just would like to update you on my 85 year old Mom. She has CHF, diabetes and renal insufficiency. Mom had a 4-day hospital stay for CHF. She was ok with fluid and they were going to release her and then she started having trouble breathing. This was caused by anemia. They released her and she had caught bronchitus, so 48 hours later she was back in the hospital. She was very anemic and underwent 2 blood transfusions. They believe she also has an ulcer. Metaphlady@aol.com


Ruthie A, August 30, 1999 - Hi, I went to visit my mother today. She is definitely in end-stage CHF. Even though she has O2 24 hours a day, she still is short of breath and coughs a lot because of the fluid in her lungs. Her lips are purple-red in color, but her skin is pasty white with no coloring whatever. She is totally incontinent and 200mg of Lasix per day does not help her problem. She has visiting nurses come twice a week and together they are trying to find some solutions so she does not wet her bed or her clothing so much. Mother is very humiliated about all of this and will not ask for help from her home's nurses, even though they would be glad to help her. Her appetite is diminishing too and the kitchen staff is trying to tempt her with her favorite dishes, which she will sometimes eat and sometimes send back. It is not uncommon for her to ask for only a milkshake for dinner. Mother sleeps a lot, but still does too many things. Often she falls asleep while trying to finish a craft project or other activity. Emotionally she is a mess. She cries a lot and keeps talking about what her doctor told her. I think his estimate of 6 months to a year left of life is pretty optimistic. My husband and I think that she will have a hard time making it to Christmas. At this point, it would be a good thing for her to pass on; then she would not suffer so much anymore. Is that a harsh thing to say? Ruthie A. rlaba@preferred.com


Rachel Needham, August 30, 1999 - Hi, Thank you Jon, for your kind words. I am well educated in the area of CHF. My husband is not. He does not read or investigate any area of this disease. He is convinced he will "beat" this thing. Anyway, I do have a question that I can't seem to get answered by doing any of my research. He has left-sided heart failure. Does the right side fail, then death? Or can death occur whether the right side fails or not? I understand that all CHF cases are different, but I'm looking for more time, I guess. He does not have any severe swelling, except sometimes his fingers. He does have all the left-sided failure symptoms. Thank you Jon. I hope you're doing well. rchlrl@aol.com


Julie F, August 30, 1999 - Hi, I haven't posted in a very long time, but I had an insurance question and thought someone here might know the answer. My 19 year old son has CHF. We got his diagnosis last October, during his senior year of high school. He decided he wanted to go away to college and 2 weeks ago we moved him up to a university in northwest Missouri about 2 hours away from us. He seems to be doing quite well, much better than I am, and I can only pray that he's taking care of his health. My question concerns his health insurance. He is covered under a PPO through my husband's work. My husband would like to change jobs and I thought that once he had his diagnosis a year, that he couldn't be denied insurance. A friend recently told me that this is only true of an HMO. Is that true? Also, if I signed him up for an HMO through my work, would they have to take him? What about a PPO? Thanks. julesbug78@aol.com


Barbara B, August 30, 1999 - Hi Jon, I found this site by accident, and was so excited because my Dad has CHF, but we didn't really know it. Once the doctors mentioned it but didn't realize it would be an ongoing thing. We have given The Manual to my sister and folks, and we are much more aware of what's happening. I hope we didn't find you too late. My Dad is 84, a diabetic and has prostate cancer. Has trouble voiding and his legs ache and are swollen most of the time. They took him off Lasix because of possible renal problems. He recently went on Hytrin to help voiding problems but seemed to get worse as far as falling more often and sleeping constantly. They say his leg pain is neuropathy caused by diabetes but it sounds like a part of CHF. Tomorrow I am searching for a specialist for his CHF. His current cardiologist doesn't want to hear about any pain below the heart. He also takes Prinivil, and some cancer medicine. He had to rush to emergency room 2 weeks ago because his potassium was high, over 6. They never found a reason for this. I now realize this problem is widespread. Thanks for your forum. Barb B. lbell@unicomp.net


Virginia R, August 30, 1999 - Hi, I'm requesting prayer for my Dad again. As I mentioned in my earlier post this month, he had tests run in Dallas. He had a pacemaker inserted and is doing ok with that. However, the toe is not well. I believe it's now a large ulcer, with flesh falling out of it. Sorry to be so graphic but I don't know what else to say about it. The doctor extended his antibiotics and now he's developed an allergy to that! We were last told that there was no infection in the bone yet, however we were also told that the toe may never get any better. Also, I'm not sure if it's the antibiotics or CHF, but it appears to me that his kidneys are definitely not doing the job right now. Thank you for your prayers! giniroberts@hotmail.com


Jon's August 30 reply to Ruthie A's August 30, 1999 - Hi Ruthie, I am sorry to hear about your mom's decline. No, I don't think it's harsh to say she might be better off dead so she wouldn't have to suffer. It's just honest. As a Christian, I try to look at that issue through the lens of salvation. To those already saved, "to live is Christ and to die is gain." To those who are not, until their last beath is exhaled, there is always a chance. Jon.


Jon's August 30 reply to Rachel Needham's August 30, 1999 - Hi Rachel, Left-sided failure is sometimes followed by right-sided failure, but not always, and not in any "average" time frame. There just isn't any way to know. Right-sided failure means a drastic increase in liver swelling and swelling of the stomach lining, as well as fluid in the lungs. The stomach lining swelling means meds will not be absorbed properly, and diuretics and some other drugs might need to be given IV to be effective. As far as I know, basically the same symptoms occur, just more quickly and in more of a "cascade" fashion, with heart failure progression getting faster and faster. Lots of people die from left-sided failure without ever developing right-side failure. I'm sorry to be so vague but I'm no doctor. Jon.


Lesley, August 31, 1999 - Hi, My Dad is 62 with DCM and CHF. He is in the hospital recovering from a virus and pneumonia, and is getting all his meds sorted out. He was very anxious and all week we talked God! I asked God "when can I talk to my Dad like a normal person again?" Well, yesterday we were able to just chat. He is putting on a good show but I'm sure he is worried. Mum had the virus as well and couldn't get out of bed to see him in the hospital. He should be home this weekend, but my mum isn't well enough to be doing all the low-fat cooking, soooo my sister and I pooled our cash and have ordered 2 weeks of low-fat prepared meals. They will still have to take care of breakfast and lunch but will have a proper hot meal each day. Actually, it wasn't that expensive really, we just phone a Slim-n-Easy diet place and voila, instant solution. I thought this might make for an easy option if you have similar meal problems; we all can't be well all the time for our CHFers. God bless! Thanks Jon, for the wonderful Website. Keep up the great work. Lesley, NSW Australia. deckerfamily@shoalhaven.net.au


Jon's August 31 reply to Lesley's August 31, 1999 - Hi Lesley, Welcome to Jon's Place. I'm glad to hear that your dad and you are now able to talk on a variety of subjects without friction. :-) Be sure to check out Kitchen Corner. When your mom is feeling a bit better, maybe she can cook meals with low sodium, which will greatly ease your dad's CHF. Jon.


Kim, August 31, 1999 - Hi, I am searching the Net to discover both answers and solace. My father was diagnosed with cardiomyopathy last year. He is 63 years old and the thought of this disease is very unsettling for him. He takes his medication and watches his salt intake, though not religiously. He worries and when he finds information regarding the heart, it is often negative, which furthers his depression. His EF is 29%. I'm wondering if someone might be able to give me more information as the doctor who treats my father is very cut and dry with very little empathy. Are there different levels to cardiomyopathy that are ranked in progression from least severe to most? What would classify the patient as going from having cardiomyopathy to CHF? I would be appreciative for any information. Thanks. melody86@yahoo.com


Jon's August 31 reply to Kim's August 31, 1999 - Hi Kim, Welcome to Jon's Place. Have you read The Manual yet? It's a great place to start and will prime you with more specific questions to ask us. :-). 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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