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

Cindy Haschets 9-1     my dad passed away
 
Wendy's 9-2 reply to Cindy H's 9-1     condolences
 
Paul B 9-2     carbohydrates, Atkins' diet
 
Pam C's 9-2 reply to Cindy H's 9-1     condolences
 
Pearl 9-2     update on Joe, hospice care, ending drug trial
 
Linda Grant's 9-2 reply to Cindy H's 9-1     condolences
 
Robert M 9-2     sweet taste as a side effect?
 
Maria T 9-2     son may need heart transplant
 
Karen D 9-2     Aldactone side effects, anyone get nauseaous?
 
Jon's 9-2 reply to Karen D's 9-2     possible Aldactone side effects
 
Dotty M 9-3     update on Jeff, thanks, prayer request
 
Jon 2 9-3     update on mom, great news!
 
Candy P's 9-3 reply to Karen D's 9-2     side effects with Aldactone
 
Dina R 9-4     update on John, questions about my health
 
Amy Jo 9-6     update, questions about appetite & doctors
 
Wendy 9-6     update, questions about procedure
 
Jon's 9-6 reply to Wendy's 9-6     RFA
 
Jon's 9-6 reply to Amy Jo's 9-6     priorities
 
Jon's 9-6 reply to Dina R's 9-4     pain & possible heart problems & anxiety
 
Kathy S 9-7     Steve had an episode, have questions
 
Lee R's 9-8 reply to Kathy S' 9-7     anti-depressant meds, heart rhythm & more
 
Renda 9-8     newborn infant with CHF, seek info & advice
 
Katie 9-8     dad's quality of life is low, I'm frustrated & more
 
Phyllis E 9-9     questions - rib cage pain & SSD
 
Carolyn 9-11     coping with back to school daze
 
Jane 9-11     helping hubby cope with too much time - questions
 
Jon's 9-11 reply to Jane's 9-11     helping hubby cope with boredom
 
Jon's 9-11 reply to Phyllis E's 9-9     rib pain, lifestyle
 
Jon's 9-11 reply to Katie's 9-8     doctors, venting
 
Jon's 9-11 reply to Renda's 9-8     have you found any useful info?
 
Ben B's 9-12 reply to Jane's 9-11     coping with too much time on my hands
 
Sherry Z 9-13     my mom, zaroxolyn questions & more
 
Jon's 9-13 reply to Sherry Z's 9-13     zaroxolyn, venting, coping
 
Katie S 9-13     need help with dad's situation, questions
 
Dorothy L 9-13     why does fluid collect around heart?
 
David G 9-13     update on my wife Lisa & her ICD
 
Robin C 9-14     seek advice on husband's condition
 
Sherry 9-15     update on my mom
 
Kathryn's 9-17 reply to Maria's 9-2     update on Julien, meds question & more
 
Sharon's 9-18 reply to Jane's 9-11     coping with too much time on their hands
 
Deb K 9-18     questions about husband's situation & more
 
Jon's 9-18 reply to Deb K's 9-18     CHF info, coping & more
 
Carrie Lee 9-19     my dad is dying, I am struggling & more
 
Wendy 9-21     update on Mike & more
 
Deb J's 9-21 reply to Maria's 9-2     life after transplant
 
Janet 9-21     common misdiagnosis - why? & more
 
Jon's 9-21 reply to Janet's 9-21     common misdiagnosis - why? & more
 
Branka 9-21     seek CHF doc near Naperville, Chicago
 
Liz B 9-22     remembering dad, take good care
 
Kathryn 9-22     25 year old son's CHF, drug induced? questions
 
Paul B's 9-22 reply to Liz B's 9-22     diagnosing CHF early, diet issues & more
 
Jon's 9-22 reply to Kathryn's 9-22     definitons & more
 
Carrie Lee 9-24     my dad died
 
Kathryn C's 9-28 reply to Jon's 9-22     shivers, good memories, Desipramine
 
Karen D 9-28     missing a father & more
 
Karen D 9-28     update on Bill, this site & more
 
Helena 9-28     update on Neil, this site, spironolactone questions
 
Jon's 9-28 reply to Helena's 9-28     spironolactone info, update, RLS
 
Lori 9-28     update on grandmother, need help
 
Jon's 9-28 reply to Lori's 9-28     a little advice
 
Wendy 9-30     Mike has low EF but no symptoms
 
Jon's 9-30 reply to Wendy's 9-30     uhhh,...


Cindy Haschets, September 1, 1999 - Hi, I just wanted y'all to know that my dad Rod Haschets passed away about 3 weeks ago. He suffered CHF and had a heart attack on his way to Lubbock, Texas. He went peacefully. I know he really enjoyed this site. It's very hard to realize that he is gone, but he is so much happier. He was 47 years old. Keep us in your prayers! Cindy Haschets.


Wendy's September 2 reply to Cindy H's September 1, 1999 - Hi Cindy, My heartfelt sympathies to you and your family. Keep him in your memories and know that he will always be with you in spirit. God bless, Wendy. Pittfarm@aol.com


Paul, September 2, 1999 - Hi Jon, While I try to check in every now and then, I'm sure there are some things that I miss. Being one to stir the pot every now and then, I was wondering if there had been any involved discussions of low carb diets on the forums. In my father's final days, his appetite when to zip and the only thing he would eat was pancakes for breakfast, then he would go into the couch to nap almost immediately. After walking down the steps, he would barely move the rest of the day. I've dropped about 30 pounds using the Atkins' Diet, which limits you to 20 grams of carbohydrates per day for the first 2 weeks. For kicks, I checked into the carbs in an order of pancakes at McDonald's. It checked in at 104. Without getting too deep, one of the tenants of Atkins is that when the body processes carbs, it actually uses up a lot of energy. I wonder if some CHFers just paying attention to sodium intake (which is so important), maybe drain and weaken their bodies even further by overdosing on carbs. Maybe I'm just full of low sodium bologna! Seriously, I've seen a lot of posts with end stage CHFers really struggling, and having witnessed it with my Dad, my heart and prayers go out to the CHFers and their loved ones. wkhj@gcnet.net


Pam C's September 2 reply to Cindy H's September 1, 1999 - Hi Cindy, Sorry for your Dad's passing. You're in our hearts. I'm glad he found some comfort here. woo_conley@hotmail.com


Pearl, September 2, 1999 - Hi Everybody, Joe is now going into his fourth month with hospice. They have been a godsend, angels from heaven. The nurses and aides are getting to be part of the family. He has a much better quality of life. They come in and get him up, get his breakfast, help him with his bath, shaving,and dressing. They also help me. The aides fold my laundry, make the bed, do dishes and whatever I need to have done. Whenever Joe has a problem, they are only a phone call away. They provide all the meds that he needs, relating to his heart. They order them and deliver them to us. It took me several weeks to adjust to them coming to our home; I felt as if I had lost all control of his care because I have doing it for so long. They will only bring a 15 day supply of medicine at a time and this was hard to adjust to because I always had a 30 day supply. I made a chart to keep track of the meds so that has worked out ok. If I goof, I only have to call them and they will bring what we need.
     We have to go to Rochester, NewYork on September 20, as they are stopping the Bucindolol trial that he has been in since 1996. I spoke to the study nurse and she said if he was on the pill and not the placebo, he will have to be taken off it gradually and would they probably put him on Coreg. That tells me that Coreg must be one of the best they have. She stated that we will not know until the day of his visit, nor will the doctor, if he was on the bucindolol. If he was on the placebo, we will not have to do anything. His doctor said that there are many more trials going on, but Joe said he would not have enough energy to go through another trial. We have to travel about 3 hours to get to Rochester. I guess the best we can hope for it is that he was on a placebo, because of the side effects of Coreg. He certainly does not need anymore discomfort to deal with.
     As I stated, his quality of life right now is good, with no pain, eating a little but losing weight. I take him out evey day for a ride or to go visit, we even went to the mall last week. He has found that using a wheelchair is not so bad after all and that he is still able to get out and enjoy life. Keep us in your prayers and God bless you all. Pearl. pjstrange123@yahoo.com


Linda Grant's September 2 reply to Cindy H's September 1, 1999 - Hi, I read Jon's Place every day and saw your post. I'm so sorry to hear that your dad passed away. Please accept my condolences. My husband has CHF. I hope your dad is at peace now. God bless your family. Remember the good times. Sincerely, Linda Grant. a3a65689@bc.sympatico.ca


Robert M, September 2, 1999 - Hello, My Father has had CHF for 7-8 years now, probably due to a viral infection that settled in his heart. He has had a second infection about a year ago, and is on medication for irregular heart rhythms. One recurring side effect that aggravates the situation involves the taste of food. Everything tastes extremely sweet to my Father and it has caused him to lose weight. Having everything taste like candy and syrup may be a kid's dream but my Father is quite sick of it. Has anyone run across a similar problem? I'm not sure what all he is taking, I will get a list this weekend when I go visit. Thanks. rmarkle@northark.cc.ar.us


Maria T, September 2, 1999 - Hi Jon, I just found your site. Thanks for all the work. It has been a great help. My son Steve is 21. He got CHF at 19, while attending college. We have been struggling with all the meds, info, emotions, etc. We are going to Houston to see a Dr. Fraiser on September 20, because our cardiologist thinks its time to look into a heart transplant. Steve has had CHF 2 years. The meds he takes are Potassium, Magnesium, Accupril, Coumadin, Atenolol, Lanoxin and Lasix. From your description of class, Steve is class 2 or 3. Are there any CHFers who have had a heart transplant? What do you know about it? What do you know about the electric pump being used to help CHFers? Thanks again. I have been very much encouraged by your site. Maria. msria@hotmail.com


Karen D, September 2, 1999 - Hi, About a month ago, I wrote in to say that my husband's doctor had started him on Aldactone after we asked him about it. Bill took it for 3 weeks but stopped because he was feeling nauseated all the time and more exhausted than normal. Since we are going on a short vacation in a week, he didn't want to stay on it. When we come back, he may try again. Has anyone else experienced the same or other side effects with a low dosage of it? I hope everyone has a safe Labor Day weekend, and Jon, it's good to know that you have found a new doctor you feel comfortable with. We have been extremely lucky with Bill's doctors and hope they continue to be on his health plan. Karen. deitemey@kua.net


Jon's September 2 reply to Karen D's September 2, 1999 - Hi Karen, One of the most common side effects of Aldactone is sore or tender breasts, in men and women. I have this problem, and if it gets any worse, I'll be stopping the drug myself, after telling my doctor, of course. When my wife lays her head on my chest, I wanna scream! <g> Jon.


Dotty M, September 3, 1999 - Hi, First of all I want Cindy to know that our thoughts and prayers are with you and your family since the death of your father. I would also like to thank everyone for the prayers for my husband Jeff. They took him out of ICU this afternoon and into a regular room. They are having a time regulating his heart. He went into A-fib Tuesday night and heart failure. His heart is still very irregular but it's either too fast or too slow. They may have to put a pacemaker in but his cardiologist is on vacation this week (of course). They are using cardizem and blood thinners on him. The main problem is that when he is sleeping, his heart rate goes down in the 40s. They said this is too low. If everything goes okay tonight, he may come home tomorrow. They want to monitor him walking around also to see how the cardizem is working. Please keep him in your prayers. I am a firm believer in the power and number of prayers! God bless all of you. Dotty M. mckbrown@webtv.net


Jon 2, September 3, 1999 - Hello people, I just thought I would update you on my Mom's condition because it has been so positive. From death's bed 4 months ago, she has come back to a class 1 CHFer able to go about her business again, although at a bit slower pace. She is 76. She started Coreg 3 months ago and her dose is up to 12.5mg twice a day and she seemed to not suffer any side effects getting there. Her cardiologist started her on Aldactone around the same time and she has not had to return to the hospital since. For someone with diabetes and COPD whom the doctors said would never leave the hospital in March, it is been quite amazing. You just never know what is going to happen. Stay positive. jonjensen@uniserve.com


Candy P's September 3 reply to Karen D's September 2, 1999 - Hi Karen, I had a similiar experience with Aldactone. When I was first diagnosed with CHF a year ago, I was put on it. I was taken off it about a week later because I had some of the same symptoms, including nausea. GrPota@aol.com


Dina R, September 4, 1999 - Hi, First of all, an update on John. I guess he is stable. He's still not able to get out much as it is still over 100° and so humid here in Arkansas. We thought he had a kidney stone a few days ago, but I guess not. The pain went away after a large BM, so he didn't go to the doctor. He's had a lot of noticeable arrhythmias, but his ICD hasn't gone off since May 20. We see the EP and his cardiologist later this month. It's been 8 months since his diagnosis, and he's made it 2 months longer than the hospital staff told me to expect. If you didn't know he was ill, he doesn't look it to the naked eye. It really is hard for CHFers in that respect. He looks so good, even when he feels awful. He's been well enough to watch our 4 year old half-days until her preschool starts, and they've had a good time bonding (most days, anyway!). It is so hard dealing with an arrhythmia problem on top of the CHF and DCM, because with that, every day is so unsure.
     Now for my question, which concerns me. Is it normal to experience a pain in the back, on the right side, when breathing in? It's like in my lungs, but in the back. I can't walk from one end of my school to the other without getting short of breath and my heart feeling like it's going to jump out of my throat. Often my heart races and feels jumpy when I lay down to go to bed and sometimes just sitting around. I have gained 30 pounds since December and look like the Pillsbury dough boy! I look pregant, but I'm not. I keep reading about women with heart problems retaining their fluid in their abdomens and I worry I may have heart problems too. When the nurses take my pulse at the doctor's, whenever I happen to go, it's usually about 78, which is pretty normal. My gynecologist thinks my weight gain is depression due to John's condition and I have been on Zoloft 2 months. I go back in October to see about a laparoscopy to see about scar tissue in the abdomen from my C-section. I wonder if I should see my PCP sooner and ask about the heart stuff. jmrice@ipa.net


Amy Jo, September 6, 1999 - Hi, Some more positive news. My husband, who nearly died this July and spent 50 days in the hospital, went to church for the first time today. His primary care physician has added Aldactone to his list of meds. He is less short of breath and his strength and endurance have increased but he still has little appetite. Is this normal? Since he left the hospital he has not seen his cardiologist. I am wondering if I should make an appointment. I am a little fearful since this is the doctor who tried to wring all the fluid out of his body, which led to his kidneys shutting down. His primary care physician seems more on top of things. Since my husband is 88, I wonder if the cardiologist has given up on him. He didn't want to try Aldactone. Should I go shopping for a new cardiologist? Since ours is not a large town, I am afraid this might cause hard feelings. Opinions? amyjo1350@aol.com


Wendy, September 6, 1999 - Hi, My husband, age 36 with DCM, was in the hospital this weekend with chest pain. However, the doctor feels that it was only anxiety. He has extra heartbeats and they are going to do an electophysiology test on him this week. The doctor says that they can possibly "burn out" some of the extra beats by "short circuiting" them with a procedure. I've searched this site and don't see anything on this matter. Can anyone help? Thanks, as always! Wendy. Pittfarm@aol.com


Jon's September 6 reply to Wendy's September 6, 1999 - Hi Wendy, I think you are looking for Radiofrequency Ablation, also known as RFA. See this page and this page. I hope this helps. Jon.


Jon's September 6 reply to Amy Jo's September 6, 1999 - Hi Amy Jo, I can only say that my own appetite hasn't suffered a bit since getting CHF, unfortunately. <g> I say shop for that new cardiologist. Isn't it strange how we delegate our own health care, our very life, to such a low level? I have done this in the past myself. Think about it. What is more important - causing a few hard feelings in people who should know better anyway, or raising your husband's quality of life and maybe saving his very life? Think about it and you'll see how we have elevated social standing of doctors so high that we suffer because of it. It's a practice we all need to rethink, I think. <g> By the way, I lived in a small town for several years so I really do know what you mean but get another cardiologists's opinion, please. Jon.


Jon's September 6 reply to Dina R's September 4, 1999 - H Dina, Pain is a sign that something isn't working quite right. A pain like you describe could be something very temporary and benign, or if it continues or worsens, may need investigating. You may have a musculoskeletal problem that a good chiropractor could take care of. Sharp pains when breathing can be caused by your ribs being "spread", inflamed or a muscle strain in the rib or abdominal area. If it is still hurting Tuesday, I'd recommend seeing a doctor of some variety about it.
     Your other symptoms could be anxiety, or you being out of shape, or heart problems or something else entirely. See your doctor about it and be sure to write down all your questions before you go. Take the questions with you, and hand him the questions list, don't read it yourself - you will be tempted to skip some of them on the spur of the moment. <g> Your concerns are real, whether you have heart problems or not, and they deserve serious answers from your doctor. Besides, if it is anxiety, certainly finding out for sure that you do not have heart problems will help you get over it, don't you think? Jon.


Kathy S, September 7, 1999 - Hi everyone, My hubby had an episode this weekend and I'm wondering if this is something that is normal (?) for a CHFer. We were outside at a trap shooting event, getting ready to start, and suddenly he was feeling weak in the legs, dizzy, with tunnel vision and feeling just plain weird. The feeling did not go away after about 20 minutes, so he went home and slept for almost 3 hours. He had a checkup a couple of weeks ago with his regular doc and he showed him his stats; Steve checks his BP, heart rate and weight on a daily basis at the same time every day. A chest x-ray was done and everything appeared to be okay. He took it easy the rest of the weekend and today he feels fine. His next visit with his cardiologist is in December. Any advice? His meds are 3.125mg Coreg, 50mg Cozaar, and 50mg Amitryptaline. dei@frontiernet.net


Lee R's September 8 reply to Kathy S' September 7, 1999 - Hi Kathy, I just wondered if your husband felt any palpitations or arrhythmias during the time he felt dizzy? You might want to call the cardiologist and let him know what happened. I also noticed that he is on amitryptaline, which is a tricyclic antidepressant that might affect the rhythm of the heart. Some antidepressants (called SSRIs, like Prozac and Zoloft) ) so far have not been shown to cause rhythm changes. I hope this helps. LeeRoush@aol.com


Renda, September 8, 1999 - Hi, Can anyone help? My daughter just had a baby on August 27. He's a handsome little guy but he was born with a cleft lip and on top of that, they told us he has CHF. My daughter is so depressed. The baby is still in the hospital and I think she is scared to bring him home. Is there anyone who might have some words for her? She is having a hard time with this. Granma in need. ladiez28@aol.com


Katie, September 8, 1999 - Hi Everyone, I just happened to stumble upon this site and thought it may be helpful for me to vent a little. My dad has been suffering from CHF for about 3 years now. He underwent open heart surgery in January, 1998. Things seemed to be turning around for him. He is also a diabetic. Anyway, he got an infection in his toe that went on for almost a year. They had no alternative but to operate and do bypass on the leg in May. Since that time he has been feeling awful. He has been battling with his weight up and down daily. He has no energy and his sugar is quite elevated. The fluid just seems to be out and then they test and he is dehydrated so they have to stop the additional water pills and then he fills up all over again. He was on blood pressure medication but since his surgery in May he cannot tolerate it. His blood pressure drops extremely low on it. They are now trying him on some new medication and conducting a breathing test.
     This has been such a roller coaster ride. My husband thinks I should be grateful since he was given last rights in December of 1997. I am grateful but I can't stand to watch him go through this. His quality of life stinks. He has no energy, is not sleeping well and is somewhat depressed. Thanks for listening. Katie. pmalinowsk@aol.com


Phyllis E, September 9, 1999 - Hi, I need to ask a question about my husband. He is 51 years old, diagnosed with CHF and cardiomyopathy in March, 1998. He has lost 75lbs on Dr. Atkins' diet and has no swelling. He is an alcoholic and drinks to drunkenness 5 nights a week. He also smokes heavily and is afraid he is going to gain weight. My question is: He complains about his rib cage hurting for 4 days. He did not injure it to his knowledge. Could this be his heart expanding? He wants to go on Disability from his work. His office is in the home and his work consists of telephoning and faxing. He thinks he can't get it, even though his doctor is for it. I am for it because I do not want him to get fired and lose what he has, like health insurance and life insurance. He will try to get more info on his company's disability guidelines an on SSD. I would appreciate any opinions about rib cage pain. Phyllis E. PErnsberge@aol.com


Carolyn, September 11, 1999 - Hi, Best regards to parents of children, teens and college students as they cope during these "back to school daze." I know emotions are very high with my two, who have DCM, dealing with new limitations and disappointments. littleone@integrityonline.com


Jane, September 11, 1999 - Hi Jon, Thank you for establishing this forum. My husband was diagnosed in July with CHF. Last week he began the maximum dose of Coreg (25mg twice daily) in addition to Lasix, Lanoxin, potassium, Zestril and CoQ10. He has been a deputy sheriff for 13 years and has had a very hard time dealing with this illness. He is depressed that his career is over. He is lonely during the day while friends and family are at work. He basically has no hobbies or interests outside law enforcement (he does enjoy the Internet). We have brainstormed several ideas like establishing a small garden, arts and crafts projects, etc. Do you have any suggestions that I can use with him? It is a big challenge and strain for me to try to come up with ideas, most of which he poo-poos. His depression and boredom are becoming a serious problem. He discussed depression with the nurse practioner at his last visit. She would not prescribe anything. I can't do this for him. He has to make this adjustment himself. Also, he is not the kind of guy to seek professional counseling. Please advise if you have any suggestions. mktjat@digitalexp.com


Jon's September 11 reply to Jane's September 11, 1999 - Hi Jane, Welcome to Jon's Place. If he enjoys the Web and the home computer, why not ask him to contact the local Order of Fraternal Police or the appropriate sherriff's organization, and ask them if they need help with their Web site, or some desktop publishing; stuff like flyers, brochures, and newsletters are made to order for home computer users. My kid brother is a cop and SWAT team member and the FOP is always after him to help with this kind of stuff because he enjoys using his pooter at home. Your husband could learn to make and maintain Web pages without too much trouble. The Web is full of tutorials - I learned all my Web skills through Web tutorials, e-mail and self teaching. It has sure kept me out of my wife's hair, maybe even too much so.
     The thing to remember is that to really keep a guy occupied, the task has to include learning something all new as well as doing it after he learns. Web authoring is perfectly suited for this, since you first learn to make basic pages, then start learning to make and edit graphics, then learn to use Java applets and scripts and stuff, all freely available and ready to use from the Web. It can really be a gas! I can even start him off with a free HTML editor and some site Urls for starters. Let me know.
     Finally, after lots of being cooped up in our house after I was diagnosed, I was starting to bounce off the walls with fatigued boredom and depression. We got a dog, a male Rottweiler. He, and now our second Rottie together, have given me the best company I could wish for when no one else is around. They are smart, strong, eager to please while still keeping very much a mind of their own. Think about getting a dog of a type that would suit your husband's personality. Jon.


Jon's September 11 reply to Phyllis E's September 9, 1999 - Hiya Phyllis, Do you think he may have hurt himself while drunk and not remember it? Look him over for bruises or other marks to be sure. It can happen. If not, be aware that heavy drinking makes a man more susceptible to inflammation, including inflammation of the cartilage in the ribs, which is an intensely painful condition. With a bad ticker and heavy smoking and drinking, it could also easily be heart-related, so he really needs to see an internist who knows his lifestyle to be properly evaluated. Jon.


Jon's September 11 reply to Katie's September 8, 1999 - Hiya Katie, Welcome to Jon's Place! Venting is not only allowed here, it's encouraged. :-) Decent quality of life with CHF requires the right doctor for you (your dad, in this case). That doesn't always mean the most skilled doctor, but the one who listens to you, and takes your concerns into account, makes multiple treatment suggestions and helps you pick the one which suits you most. Maybe your dad doesn't have the right doctor for him. A second opinion never hurt anybody. Think about it. And, you can vent here anytime. Jon.


Jon's September 11 reply to Renda's September 8, 1999 - Hi Renda, I hope you got the Url I e-mailed you. Have you had much luck finding Web sites that deal with pediatric cardiomyopathy and pediatric heart failure? If not, please write and let me know and I'll see what I can dig up. Go with God, Jon.


Ben B's September 12 reply to Jane's September 11, 1999 - Hi, I always knew I would have to retire someday, I just didn't know it would be at 42. It was hard for me, especially since I worked a year and a half with an EF of 10-15, so I kept thinking I was just goofing off when I went on Disability. I have to admit that after one year I feel a lot better. I don't know what your husband's energy or symptom level is, but for me going back to school has helped to alleviate the horrible boredom and depression. Part of this is because I absolutely refuse to give up on someday going back to some sort of work unless I absolutely have to. For me, after trying all sorts of things to consume time, the key was to find something that required some sort of routine, and that involved goals I could meet. Of course everybody is different, but this works for me. I wish your husband good luck. bdbrinkman@juno.com


Sherry Z, September 13, 1999 - Hi everyone, This is my first time writing in but I have been reading you all for a long time. I am crying uncontrollably now and I thought who else would understand, but you all?! My mother was diagnosed with CHF about 15 years ago. It was steadily getting worse and in December, 1997, she had a mitral valave replacement and one bypass. Shortly after she was home and trying to recooperate. She was admited to the hospital again for sepsis. It was a miracle then that she survived, as it was this past winter. Mom developed viral pnemonia and was on a ventilator for almost 3 weeks. No one thought she would make it. Along with her weak heart, she has diabetes. She is 73 years old. She managed to pull through after a number of setbacks and is now home again.
     Since she was discharged from the long stay of 5 months, she had one week-long stay in the hospital for CHF. The span of her filling up with fluid is getting shorter and shorter. She complains about no appetite and sleeps quite a bit. It is so strange because she could be doing fine for 2 weeks and then suddenly change overnight. I am so upset right now becasue she is suffering today. I keep asking the doctor, whom I love, how long she has, but it could be years like this. The pneumonia episode really took its toll and even though I see improvement some days, overall she isn't getting that much better.
     This is such a terrible disease and my heart goes out to all of you. Jon, thank you so much for starting this. By the way, she is on 80mg twice a day of Lasix as well as Coumadin, Digoxin and Vasotec. I never hear anyone talk about Zaroxlyn. Does anyone have a relative that takes that? I would really appreciate hearing from anyone. I am very upset but writing this actually helps. God bless all of you. Thanks. Sherry. szaudere@milbank.com


Jon's September 13 reply to Sherry Z's September 13, 1999 - Hi Sherry, Welcome to Jon's Place. I took zaroxolyn briefly but improved and don't take it anymore. My CHF doc talks about it as a way to avoid switching to a stronger diuretic like Bumex when Lasix isn't quite doing the job anymore. It's a sort of Lasix supercharger.
     Venting helps prevent us from turning inward. By getting it all out we can begin thinking about dealing with our problems rather than dwelling on the weight of them only. Venting is a good first step in the coping process, I think. Don't be a stranger! Jon.


Katie S, September 13, 1999 - Hi, I just recently found out that my dad has CHF. He is 50 and has lived a hard life, drinking and smoking. He has been sick over 6 months with terrrible edema in his legs. He recently found out what was wrong after his third visit to an emergency room. He has no insurance and no money. He had to quit his oil field job because of his illness. He refuses to get treatment because he can't pay. He knows he must do something; he can't just let it kill him, but they haven't found any solution. He has looked into some programs to help with financial matters but he is not eligible. I believe he has applied for SSI but I hear that takes over a year to get things going. I'm afraid I'm going to lose him because he is being stubborn.
     Any suggestions on getting him to treatment, financial help? What to do until a solution is worked out? He takes diuretics now and quit drinking, I think, but still smokes a lot. He doesn't even know anything about CHF. I'm sending him research that I do. Any help would be appreciated. katie@kezomail.com


Dorothy L, September 13, 1999 - Hi, Can someone please tell me why fluids collect around the heart when a person has CHF? The fluid around my mother's heart has been removed. Please help me with this question. Thanks, Dorothy Lea. dorothylea@excite.com
 
Jon's Note: have you read The Manual yet? :-)


David G, September 13, 1999 - Hello all, I have not visited the site in quite awhile. I just wanted to give update on my wife, Lisa, age 30. She had a defibrillator implanted about 6 weeks ago for her chronic a-fib. The device is still considered experimental. Her a-fib returned last Tuesday and she had to shock herself back into rhythm. The shock was much less traumatic than cardioversion and she is feeling great again. I wish everybody the best! Dagrez@aol.com


Robin C, September 14, 1999 - Hi, My husband is 39 and has been on meds for CHF for about 6 years. Last November, he collapsed in full cardiac arrest. Since then he's had an AICD implant and is having a very hard time adjusting to the lifestyle changes. He went 7 months before the AICD kicked. Always a drinker, he worked himself up to an 18-pack of beer a day. He recently went into a rehab unit to kick the booze, but since he got home, he's been having severe headaches, total lack of energy and can hardly lift himself off the couch. We don't know if it's the change in meds, straight depression, or what. Any ideas? He's currently taking 12.5mg Coreg twice a day, along with Accupril, Verapamil, Amiodarone and Coumidan. wesnrobin@sedona.net


Sherry, September 15, 1999 - Hi, Thank you Jon for your e-mail. I spent all day yesterday with mom in the emergency room. She was having a "heavy" feeling in her heart and she gained a few pounds overnight so we took her in. They gave her 120mg IV Lasix on top of 5mg of zaroxolyn and her usual dose of 80mg of Lasix, which she took in the morning. I spoke to the doctor about increasing her usual dose of 80mg twice a day and I think he is going to. We see him again on Friday so we shall see. I am so amazed at how she could be fine for a few weeks and then all of a sudden start retaining so much water. I wish everyone the best. szaudere@milbank.com


Kathryn's September 17 reply to Maria's September 2, 1999 - Hi, I am new to this online stuff, but I gotta tell you I am very happy to find a Website like this. Thank you all for helping me feel like I am not alone in this. My 25 year old son was diagnosed and hospitalized with CHF on August 9th. He was in CCU for 5 days with a Swanz-Ganz catheter and there was initially talk of transplant. He has improved and is home with me now. He is on 50mg Captopril 3 times a day, 20mg Lasix, 0.375mg Digoxin, aspirin, and yesterday his cardiologist added 25mg Aldactone every day. His BP has stabilized and he is feeling better, but I worry about the addition of the Aldactone. I would love to hear from anyone else who has a child with CHF. I only have computer access from work on a limited basis. Thanks for any advice, Kathie. Son is Julien in Portland, Oregon. Kathryncole@hotmail.com


Sharon's September 18 reply to Jane's September 11, 1999 - Hi, My husband, like yours, was forced to leave his job last year at the age of 33 because of his cardiomyopathy. He also had to quit his workout routine. Daytime depression and boredom had been a regular concern, not to mention my own guilt for leaving him while I went to work. He started taking one class a term for his MBA and this month tried taking 2 (so far so good!). School has been phenomenal for him, giving him something to focus on - the brain stimulation he needed at his own pace, on his own time. I also work for a college and know we are always looking for retired professionals who would be willing to teach short term courses or workshops in criminal justice, juvenile delinquency and law enforcement. Just a thought. Jon's Web suggestions are great too! Good luck. still_tickin@msn.com


Deb K, September 18, 1999 - Hi everyone, This is my first time sending a message. In the last 3 weeks my husband saw our family doctor and a cardiologist, had an echocardiogram and cardiac catheterization. His diagnoses were CHF and cardiomyopathy, with an EF of 35%. He is 52 years old. His medication regimen right now is digoxin, zestril, Lasix, aspirin, potassium and pravachol. He also has sleep apnea and requires a C-pap machine at night. After 2 full weeks of meds, he can lay flat and sleep rested. His shortness of breath episodes are few and his cough is nearly gone. His lungs are clear and all his swelling is gone. His BP has gone from 190/110 to 114/76. His fatigue is better after spending a number of days sleeping 10-14 hours per day, including naps. He still tires easily. Today he went for his first walk in a long time and he needed a nap afterwards. I am trying to tap all resources possible for information. His cardiologist indicates that when he is better a new med will be tried, Coreg, I believe. Right now, I have lots of questions. Our son is away at college. We had a hard time convincing him to go to school since he wanted to stay home and help with Dad. All our other relatives live out of state, so there is no support system to go to.
     Can people with this diagnosis ever go back to a desk type of job or is applying for Disability inevitable? What is the probability that his EF can improve? His cardiac rehab program will be starting in about 3-4 weeks. What is a MUGA? I feel I am on a roller coaster. I am strong on the outside but frightened about all the decisions needing to be made. Is our future over; career, traveling, financial security? dakazz@hotmail.com


Jon's September 18 reply to Deb K's September 18, 1999 - Hi Deb, Welcome to Jon's Place. You can find out about CHF tests, including MUGA here. Your future is not over. Everyone has a future! EF can improve, although it's not guaranteed. ACE inhibitors and beta-blockers both help slow or reverse disease progression in most people and raise EF in almost as many. Your best first step is to read The Manual. This will give you a quick, basic understanding of how to cope with CHF and will help you form more specific questions to ask. Be sure to read the other CHF info pages here as well.
     Disability is not inevitable. The effects of CHF can vary greatly from one person to the next. This is one of those wait and see situations, unfortunately. You can read about SSD here. As you can tell by now, it is going to take you awhile to read through the information available here, but once you do, you will be far better equipped to face that future I mentioned. :-) Ask all the questions you can think of right here, and we will do our best to answer them. Jon.


Carrie Lee, September 19, 1999 - Hi, I stumbled on this site by accident looking up a drug name, Pacerone. My father is dying of final stage CHF. He is 69 and had his first major heart attack at 42. I am struggling with the end approaching. If you were to read his diagnoses, your mouth would drop. What is happening with him now is his heart rate is going from 30 up to 142. He passed out on my mom yesterday and started to turn blue. She called 911 and they got him up to emergency and basically told us to take him home. When we got him home and in his chair he became very grey and his eyes rolled to the back of his head. We thought he had left us. He came back and started crying. For the first time, he asked for each of his daughters, hugged us and told us he loved us very much. We finally got him stablilized and to his bed. Last night around 12:30 AM, it happended again.
     I know I am rambling. I am frightened. I have so much to say and just don't know how to put it into words. To all of you who are going through this, my heart goes out to you. I just turned 40 on August 30. My husband and I brought home our 2 year old boy whom we adopted from Guatemala. I wanted my dad around for that and I was granted my wish. He's my best buddy and it hurts to watch him and mother go through this. He never gives up.
     To the woman who has gained weight and her heart races, you may be having panic attacks. I was diagnosed with them 2 years ago. They come on when my dad gets sick. The closer I get to 42, when my dad had his first heart attack, the more paranoid I get. I also have MVP, so my heart is always going wacky. It's a frightening feeling. Thanks for the ear, Carrie Lee. modoc@worldnet.att.net


Wendy, September 21, 1999 - Hi everyone, I was catching up on all of your posts. My prayers are, and always have been, with all of you. I just wanted to reach out to each of you for a supportive squeeze of the hand and hug.
     Mike, my 35 year old husband goes in for his MUGA and a ventricular stress test on Friday. This long nightmare will hopefully have some kind of definitive diagnosis. We just feel at this point, for someone to "deal our card" so that we can adjust to whatever he has. We're hoping for arrhythmia without heart damage. Pittfarm@aol.com


Deb J's September 21 reply to Maria's September 2, 1999 - Hi Maria, My husband had a heart transplant last December. He is doing very well. So well he decided he wanted us to have another child and we are now expecting in May. There is much to life after transplant. Get your son into the best transplant program in your area and pray. God never leaves us alone especially in tough times. Good luck and feel free to ask questions. maillay@netzero.net


Janet, September 21, 1999 - Hi, My husband was misdiagnosed as having pneumonia 4 years ago. Within 36 hours of his admission to the local hospital, he was tranported to another hospital on a ventilator and in total respiratory arrest. He has recovered, to use the term loosely. While in CCU at the second hospital, he suffered a severe CVA which has left him with near-total left side paralysis. I guess my question is this: If pneumonia is a common misdiagnosis, as I have been told, why? He had all the classic symptoms. He could not even lie in the local hospital bed, sat in a chair to sleep, showed edema, but was given no diuretics and only monitered by respiratory therapy for O2 sats. After 4 years I'm still having trouble dealing with this misfortune. Any suggestions or advice? jsend@hpcisp.com


Jon's September 21 reply to Janet's September 21, 1999 - Hi Janet, That's a common problem with a number of answers. How old was your husband at misdiagnosis?
     As far as coping, there is no easy answer, as you know all too well by now. However, illness of all kinds and severities can be dealt with, depending on the tools we decide to use. Many people do best by taking control of as many factors as possible. Self-education, willingness to try alternative or experimental medical therapies, and a solid dedication to physical therapy and diet control all go a long way. I have placed my personal hope in Christ and He has never let me down, even though I am a terribly difficult child to deal with. <g>
     I was also damaged by misdiagnosis, so I'll speak to that. I doubt that the feelings haunting those who were harmed by misdiagnosis can ever be dealt with except by forgiveness. We can carry our anger and frustration around with us every day or we can make a stunning realization - doing so gives that event and the people associated with it a great deal of power over us. After all, if we keep it with us and stew over it, aren't they ruining our life every day for the rest of our lives? Only by letting go and forgiving them, can we gain victory over both the tragedy involved and also over the people we have feelings against. Jesus says this. He knew that only through love and forgiveness could victims be free. So, we either have to give up our hostility or grant others power over us forever. Once a person realizes that, I think it gets a lot easier to forgive, and once that is done, it's not a long journey to God. Don't be a stranger. Jon.


Branka, September 21, 1999 - Hi, My husband was diagnosed with CHF in February of this year. We live in the Naperville, Illinois area. I was hoping that someone on this forum might be able to recommend a good CHF physician in this area. Thanks. branka@worldnet.att.net


Liz B, September 22, 1999 - Hi everyone, This is my first time posting. I've been reading your posts and my heart goes out to each of you. I wish I'd found this site sooner. My dad died of end-stage cardiomyopathy on November 16, 1998, after dealing with his illness for 3 years. I also work with CHF patients so I have a particular interest in learning all I can about CHF. I suspect my dad experienced symptoms long before he sought medical treatment. He didn't take CHF seriously until he was forced to - when he started IV dobutamine treatments in spring of 1998. He was the first person in his cardiologist's practice to take Coreg. I thank God for that medication. It made all the difference in how my dad felt. He and my mom were able to travel and in fact, they went on a cruise the week before my dad died.
     I miss him terribly but I really feel that as much as you encourage and support your loved one with CHF, that individual has to take responsibility for taking care of themselves. It's hard to watch when they choose not to do so. I would cringe every time my dad mentioned eating Chinese the night before for dinner! Never mind that his daughter is a dietician and encouraged him to follow a low-salt diet. Mom did all she could to keep him healthy, too. Take care of yourselves. millefiore@fuse.net


Kathryn, September 22, 1999 - Hi everyone, Julien, my 25 year old son, is having some physical symptoms I have not seen mentioned in other posts. I am wondering if anyone knows if these are related to CHF.
     He sweats a lot. He was doing this when he was in severe CHF before diagnosis and while in the hospital. It subsided as he became stable but last night he started up again in his sleep. Since it seemed to occur when he was in severe CHF, I am worried it may be a sign that he is headed for another setback.
     He also gets what he calls shivers. He says they are shivers, not chills. They seem to happen at odd times and with the slightest change in air temperature. He has no fever and no other signs of illness. We have asked his cardiologist about the shivers and she recommend he see his primary care physician.
     Emotions: We are both exhausted. He is just starting to ackowledge his CHF. We had a good cry together last night. He shared that he is afraid to fall asleep because he is worried that he may not wake up again. I am scared too. I am feeling like he is 12 years old again and am afraid to let him go out with his friends and be the adult he is. I know we can only do so much and the rest is up to God, but it is so difficult! At 25, he is just starting his life and he feels cheated, alone, scared and angry.
     One more question: His cardiologist called his CHF idiopathic myocarditis. Does that mean anything? Is that just a way to say "we don't know what caused it?" I am wondering if this could be drug induced. My son was on a high dose of antidepressants for a long time - 10 years on a drug called Desipramine. That's a tricyclic antidepressant. Our pharmacist says (now that CHF has reared its ugly head) that the tricyclic antidepressants are very cardio-toxic. Has anyone else heard of CHF caused by long term prescription drug use? The drug was prescribed under the care of a child psychiatrist that my son was seeing for Attention Deficit Disorder. Julien took 375mg Desipramine (that's 75mg over the maximum dose) for 10 years. We are no longer seeing the psychiatrist and he is completely off any ADD drugs. Please warn your CHF loved ones to be very careful of prescribed antidepressants. Ask your pharmacist for the drug company inserts that come with the meds that show all the contraindications. These drugs can cause arrhythmia.
     Sorry this is such a long post. Jon, I am in your debt for providing a place for CHF patients and their families to ask questions the doctors can't or won't answer. This place is a lifeline! Thank you! Kathie in Portland. Kathryncole@hotmail.com


Paul B's September 22 reply to Liz B's September 22, 1999 - Hi Liz, I don't know how old your father was when he came down with CHF, but a few months back I speculated that when we attribute an older person's inability to do what they used to do aging, in some folks it may be the beginning stages of CHF. I would imagine if CHFers could be diagnosed earlier, perhaps longevity and quality of life could be extended for many of them. How to do that is the big question. I can't see insurance companies footing the bill for such expensive diagnostic tests on what may be only a hunch. I guess, until there's something more reasonable on the table, the only thing we can hope is that our senior citizen loved ones can be coaxed into a healthier lifestyle that may delay the onset of CHF, if my theory is right.
     My father passed away last fall as well. Outside of a theory that his cardiomyopathy may have been caused by a virus, it was really hard to put a finger on the cause. He never smoked or drank. He never had high blood pressure or any heart problems and his weight was not a problem. We did notice he had slowed down and wasn't getting as much walking in as he used to in the couple of years before his diagnosis. Awhile back, I floated a debate topic that no one bit on concerning high versus low carbohydrate diets for CHFers. I'd be interested in seeing how blood sugar levels affect the physical abilities of CHFers. wkhj@gcnet.net


Jon's September 22 reply to Kathryn's September 22, 1999 - Hi Kathryn, Idiopathic myocarditis means precisely what you think. <g> It means an inflammation of the heart due to unknown cause(s). It is not an uncommon diagnosis for those with CHF. My own cardiomyopathy is idiopathic, or cause unknown. A lot of confusing medical words are defined here.
     I don't know if Desipramine is responsible for Julien's CHF and I certainly hope anyone with such experience will write. What I can find on the drug is very little but you're right that it can be responsible for heart arrhythmias, and it affects levels of norepinephrine, which plays a part in heart stimulation. Specific effects of this drug on the heart I know nothing about, but we CHFers take beta-blockers to tie up our beta-adrenoreceptors so they aren't so active. This slows our heart rate and has benefits for our heart function. So, any drug that significantly affects adrenal effects in the body for 10 straight years could conceivably do some damage. Keep in mind that I ain't no doctor, though. :-)
     Lots of us CHFers have had the sweats, both before and after diagnosis. Do a search for "sweats" in the site search at The Archives and you'll see that it is quite common. Whether it means an upcoming CHF episode or not, I just don't know. I get shivers a lot too, but mine are what I would definitely call chills so I don't know if we're having the same thing and perceiving it differently or having 2 entirely different shivers.
     I'm going to sign off. I'm a bit tired tonight. I hope others will address the issue of all the emotions that hit us when we get a chronic illness. By the way, the longest posts around here seem to be mine so never worry about that. <g> Jon.


Carrie Lee, September 24, 1999 - Good morning to all, My dad passed away yesterday morning at 9:00 am. We put him back into the hospital on Wednesday afternoon. His body was filling up with fluid. They tried a large dose of Lasix and it failed. His kidneys shut down and it was now a matter of keeping him comfortable. He fought so hard. He looked into my mom's eyes and said, "I'm trying." We were all there through that night up until his passing. I am very angry right now and hurt. I know it will take time, but it makes no sense to me at the present. Love to all of you and to the people who responded to me by e-mail; you blew me away. I didn't realize there were people out in the world like you left.

When a man dies, he is not dead.
He has merely changed his world instead.
His vision may become that of a tall tree,
Looking out in all directions at once.
His vision may become that of a tiny ant
With his nose as his horizon.
His vision may include the voice of stars or
the humming song of leaves, Who knows?
 
In this world a man can also be
The warm breath of the summer wind
Or the comforting blanket of winter snow.
In this world a man who is a raven
Is also a man who is a stone.
Each living thing has lived before:
The bird. The tree. The man.
Why fear this change of worlds, my friend?
Your courage travels with you.
Your example is left behind
So that others may know
The sweetness of your time.  by Nancy Woods

     Love to all, Carrie Lee Mohun. modoc@worldnet.att.net


Kathryn C's September 28 reply to Jon's September 22, 1999 - Hi Jon, Thank you so much for the reply. The shivers Julien gets seem to happen when he is a bit tired, but doesn't want to admit it? So they may be a blessing in disguise, making him seek rest for his body when his mind doesn't feel tired. They do worry us a bit, because he has never had that kind of feeling before. It is so very reassuring to tell him that others have had similar symptoms. Thanks!
     As far as the emotional turmoil goes, we decided to blow off the weekend "have to do's" and take a day at the beach for our therapy. Saturday we just took off and drove to the Oregon coast for the day. It was a wonderful experience. The day was crisp and clear and we had a picnic at one of the state parks, fed the seagulls, walked a lot and in general enjoyed ourselves. We both said it was a good memory. I think CHFers and their loved ones need to make as many positive memories as we can to replace those negative memories of hospitals and the trauma we've been through. I hope everyone who reads this takes the time to "smell the roses" with their loved ones. Watch a funny movie, go for a slow walk through the park, go for a drive in the country, or spend the day at the beach or mountains. Just sitting in the middle of nature is very healing. Keep those wonderful times tucked away and bring them out when you need them in times of stress.
     More info about Desipramine: One Web site I found lists CHF as a result of overdose of Desipramine. Also listed are arrhythmias, heart block, MI, tachycardia, bradycardia and the list goes on. Reading this info makes me angry that anyone would prescribe this drug at such a high dose considering the contraindications. I don't know what to do with that anger, because I need to release it and get on with the healing process. So much negativity can turn in on us and make us get "stuck" in trauma. Kathryncole@hotmail.com


Karen D, September 28, 1999 - Dear Cindy and Carrie Lee, Please accept my sympathy and condolences on the deaths of your fathers. My dad passed away 3 years ago from lung cancer, and it's still hard to accept that he's gone. But the poem that Carrie Lee posted is a beautiful tribute to her dad, and will be one that comforts me, too. Thank you for sending it. I hope that both of you will find peace with the knowledge that your fathers aren't suffering any more. That has helped me. Karen D. deitemey@kua.net


Karen D, September 28, 1999 - Hi, Just an update on Bill, and our trip to visit relatives in the Midwest and then on to the Grand Canyon. Bill's EF has been at 12-15%, so I was concerned that he would have problems with breathing at the high altitude but he did great! I was the one who was huffing and puffing and getting terrible headaches whenever we walked up a little incline! Other than having to stop and rest because of me, we had a fabulous vacation. For those of you who haven't been there, if you ever get a chance and get the ok from your various doctors, try to go. It's a trip that we will never forget. Bill took 7 rolls of film in 2½ days! We stayed 2 nights at the Park and then drove back to Flagstaff through the Navajo Indian Reservation, and stopped at 2 National Monuments (a Pueblo and a volcano). The scenery was just breathtaking (in my case, literally) and so different from what we see here in Florida.
     Anyway, we saw Bill's transplant cardiologist today in Tampa and she was very pleased that he had no problems with the altitude. In fact, Bill felt so well today that he did the driving over and back - about 2 hours each way - and still feels good. I have done all of the driving to Tampa for the last year, so this was quite a change. However, she plans to have him take another Vo2max after the first of the year. In January he scored 17.3 and in July it had gone down to 16.2. She said today that if he hits 15, she will activate him for a transplant regardless of how he feels, so that he doesn't get too sick before they find a heart.
     She had also checked out your site Jon, and was impressed. I think she especially likes the way that you are up front about what may be ahead for people with CHF. When we left, she was telling the case managers that she would give them the address so they can check it out and learn what kinds of questions patients and their families ask. Thank you again for all your hard work in keeping this site going. We really appreciate it. Karen. deitemey@kua.net


Helena, September 28, 1999 - Hi all, It's been awhile since I wrote. I have good news: My father Neil, who had an ejection fraction of 15%, found out from a recent test that it is now 34%. It has gone up steadily. He is now 67 and he uses oxygen 24 hours a day. He can go out, though. His doctor has given him various heart drugs and recently he had a pacemaker put in. We are trying to get him a computer so he can communicate here too. Many of you were very useful to him and myself before the procedure. His doctor wants to give him a new drug called spironalactone. The doctor said it would help his left ventricle, which was damaged, pump better. I wonder if anyone knows anything about it or if it also has another name? He has most recently been concerned with diabetes. That is being helped with medication and diet. Thanks again, Helena. AmberHPS@aol.com


Jon's September 28 reply to Helena's September 28, 1999 - Hiya Helena, That's great news! Spironolactone is the generic name for Aldactone. You can find the latest news about it here. Also, you can look it up in The Archives (use the search engine there) and at the various drug sites listed on the Links page.
     I've been a bit slow answering posts, and even just getting them put up. It's the leg pain and sleep disruptions in full swing. However, my new internist is considerably more thorough than my previous doc and he already has diagnosed me with RLS (Restless Legs Syndrome) and an associated sleep disorder. I have to say the symptoms fit me all too well and we are trying a Parkinson's disease treatment to see if it helps or just makes it worse - either is possible. With a little more regular sleep schedule under my belt, I should be back to to my usual attempts at over-achieving. <g> Those attempts always fail but they do keep me out of trouble. If anyone else has RLS or has pain and creepy sensations or jerking in their legs and trouble sleeping, e-mail me and I'll send you some good Urls with info about the condition. Jon.


Lori, September 28, 1999 - Hi Jon, My 91 year old Grandmother and I are still battling her CHF. The other day the doctor did some tests and said that her electrolytes were all okay but her carbon dioxide level was 70. She had been confused, lethargic, and sleeping all the time. He said this could be the beginning of the end. He said her heart or something else will eventually give out. He gave her prednisone and an antibiotic to try. Her feet and ankles are swollen and her lungs are full. Her meds are: Sennadax, Synthroid, Effector, furosemide, Kaachlorlye, Diphenhydramine, Norvasc, Gentamicin, Theophylline, Potassium Chloride and aspirin. I guess I'm getting bummed out. Is there any news you can give me or advice? Thank you. ericlori@netins.net


Jon's September 28 reply to Lori's September 28, 1999 - Hi Lori, I guess my first question is, "Is she being treated by a CHF specialist?" If not, my main advice is to get her to one as as soon as possible, if possible. Prednisone is usually to be avoided in CHFers because it makes us retain fluid. You say her ankles are already swollen, and prednisone will only make it worse. I am not a doctor and don't know all the details of your grandmother's health anyway, but a stronger diuretic might help as well. The main thing is to get the right doc, though. If she is seeing a CHF doc, try another one - no kidding. It's a royal pain but it can make the difference between life and death and it can also make the difference between a good life and a lousy one! Jon.


Wendy, September 30, 1999 - Hi, Just an update on my husband. Mike has a 28% EF, down from 50%. He still has absolutely no symptoms. This just doesn't make any sense anymore. I'm starting to get just plain angry. We are going on almost a year now and still nothing! Okay, I'm done venting. Wendy. Pittfarm@aol.com


Jon's September 30 reply to Wendy's September 30, 1999 - Hi Wendy, Let's see now,..., you're mad because Mike is feeling good? 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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