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

Julie C 5-1     is this sort of rebellious attitude normal?
 
John's 5-1 reply to Al H's 4-27     bypass surgery experience
 
Doreen 5-2     what should we be asking? & more
 
Annie G's 5-2 reply to Bill's 4-29     flash CHF & more
 
Cheryl 5-2     transplant teams, Coreg effects, tests & more questions
 
Jon's 5-2 reply to Cheryl's 5-2     CHF docs, Coreg & more
 
Shawna 5-2     seek site for those with strokes
 
Bridget 5-2     daily vomiting problems - anyone else?
 
Delores Price 5-3     my husband died & more
 
Karen D's 5-3 reply to Delores Price's 5-3     sincere condolences
 
Cheryl's 5-3 reply to Jon's 5-2     test results, meds, losing weight & more
 
Jon's 5-32 reply to Cheryl's 5-3     test results, meds, losing weight & more
 
Emily 5-4     seek some low sodium foods info
 
Patricia S 5-4     what to order at restaurants?
 
Ellen S 5-5     does anyone else get and stay really hot?
 
Todd K 5-5     has anyone heard of biventricular pacing for CHF?
 
Jon's 5-5 reply to Todd K's 5-5     biventricular pacing
 
Gus R's 5-5 reply to Ellen S' 5-5     body temperature problems
 
Karen D's 5-5 reply to Patricia S' 5-4     eating out
 
Jon's 5-5 reply to Karen D's 5-5     salad bars
 
Karen D's 5-5 reply to Emily's 5-4     low sodium brands & tips
 
Delores 5-5     need help for my mom, please
 
Jon's 5-5 reply to Delores' 5-5     some suggestions
 
Karen P 5-6     dialysis & kidney failure questions
 
Karen D's 5-6 reply to Jon's 5-5     thanks for the info
 
Loretta M 5-6     intro, questions
 
Tracy M 5-7     acute versus chronic CHF & more
 
Jill 5-8     seek info on stages of CHF
 
Jeanette's 5-8 reply to Loretta's 5-6     doctors, shaking & more
 
Lucy M 5-8     questions about my aunt's meds
 
Wanda G 5-10     questions about chelation
 
Jon's 5-10 reply to Wanda G's 5-10     you're right
 
Jon's 5-10 reply to Tracy M's 5-7     acute versus chronic CHF
 
Wanda G's 5-11 reply to Jon's 5-10     thank you, have some info for Canadians & more
 
Annie 5-12     seek north Jersey CHF doc & have questions
 
Michael 5-13     seek pacemaker experiences
 
Janet Grooms 5-13     can anyone help?
 
Janet 5-13     intro, having trouble coping
 
Jon 5-19     sorry for the gap in forum activity
 
Phyllis J 5-19     I really need some help
 
Darlinda 5-19     my dad died from CHF, seek answers
 
Sue 5-21     hoping your pooter is better
 
Jon's 5-21 reply to Sue's 5-21     yes and no, could use help
 
Bill D's 5-21 reply to Phyllis J's 5-19     end of life physical comfort
 
Jeanette's 5-21 reply to Phyllis J's 5-19     I am praying for you both
 
Lora 5-21     questions about dad's symptoms, side effects?
 
Jon's 5-21 reply to Lora's 5-21     one possibility
 
Kathryn 5-21     take it easy Jon & I worry about my son
 
Jon's 5-21 reply to Kathryn's 5-21     taking it easy & more
 
Mary 5-22     need help for my dad
 
Jon's 5-22 reply to Mary's 5-22     print out some info for him to start with
 
Wanda G's 5-22 reply to Phyllis J's 5-19     discuss options with his doc & more
 
Natalie 5-22     keep the faith
 
Todd K's 5-23 reply to Mary's 5-22     getting the right doc, hope & more
 
Sherry 5-23     update on mom & Greg, prayer requests & questions
 
Jon's 5-23 reply to Sherry's 5-23     the transplant "matching" process
 
Janet L 5-24     chills & hot flashes, meds questions
 
Jamie's 5-24 reply to Janet Groom's 5-13     desperately need some advice
 
Matt 5-24     seek CHF doc in Dallas, Texas
 
Jon's 5-24 reply to Jamie's 5-24     some suggestions
 
Bill D's 5-24 reply to Janet L's 5-24     meds & side ffects, & a little humor
 
Joy S' 5-24 reply to Matt's 5-24     a Dallas CHF doc to consider
 
Eileen C 5-25     question about my dad's death
 
Sherry 5-25     update on Greg & my mom - prayer request
 
Janet L's 5-25 reply to Bill D's 5-24     needed that laugh!
 
Pat Y's 5-26 reply to Eileen' C's 5-25     choices, decisions
 
Judy H's 5-26 reply to Janet L's 5-24     CHF & hot flashes, sweats
 
Phyllis J's 5-26 reply to Bill's 5-21     have urgent questions about end stages of CHF
 
Rita C 5-27     seek CHF specialist in Fort Worth, Texas area
 
Pat 5-29     husband has problems at night, exhaling - anyone else?
 
Lora C 5-29     doctors have given up on dad - any ideas?
 
Beverly C's 5-30 reply to Pat's 5-29     breathing problems, doctors & more
 
Kathy 5-30     seek others in the same boat
 
Kathryn's 5-30 reply to Kathy's 5-30     coping with a loved one's illness
 
Bill D's 5-30 reply to Lora C's 5-29     severe CHF, other organs & more
 
Lora C 5-30     seek South Carolina CHF specialist
 
Joan S 5-30     intro, trouble digesting, Coreg questions & more
 
Jon's 5-30 reply to Joan S' 5-30     meds & more
 
Joanna T 5-31     seek southern New Jersey CHF specialist & more
 
Jon's 5-31 reply to Joanna T's 5-31     CHF meds therapy
 
Lora C's 5-31 reply to Bill D's 5-30     lesions on arms questions & more
 
Kat R 5-31     depression, meds, activity questions
 
Judy H's 5-30 reply to Joan S' 5-31     Coreg experience, interested in others'


Julie C, May 1, 2000 - Hi, As I suspected, my newly-diagnosed husband is rebelling already. We didn't have a scale so I told him I was going to get one and I wanted to get him a blood pressure self-tester that he could use on himself, the kind you just slip your finger through to get a reading. I have a blood pressure cuff and stethoscope but we work different hours so during the weekdays we only see each other in passing. He began complaining that he didn't see why he had to weigh himself every day or take his blood pressure every day and if he had to do that, what was he taking the medicine for? That it was his decision whether he was going to do what he's supposed to do and that he had a big life insurance policy anyway. I get very upset when he talks like that. He's only 38 and we have 2 teenage children that need him as much as I do. Is this kind of rebellion against treatment normal? He doesn't feel "sick" and therefore I don't think he is taking his condition seriously. I don't want to turn into a big nag but what can I do to help him take this more seriously? Thanks. Dbugg962@aol.com


John's May 1 reply to Al H's April 27, 2000 - Hi Al, They are quickly reaching a point of doing bypass surgery through 2 small incisions rather than splitting a person open like a chicken, which is not fun. I had 3 arteries 60-80% blocked and a fourth artery 100% blocked the first time around, and the bypasses have all stayed open except for one. It got blocked by a blood clot, causing my heart attack a couple of years ago. John. a_lenny6@hotmail.com


Doreen, May 2, 2000 - Hi, I just found your site and am hoping you can enlighten me on CHF. I read The Manual and found it quite helpful; I thank you. My father-in-law is in the hospital with CHF. He is 80 years old and has had 3 heart valve replacements. He is on a ton of medications which treat his cholesterol, thyroid and I don't know what else, but can find out. I guess my question is: What questions should I be asking and what can we expect? I am concerned that the CHF is affecting the valve replacement, which may cause some residual damage. Is that a possibility? Help! Thanks, Doreen. Doreebb@aol.com


Annie G's May 2 reply to Bill's April 29, 2000 - Hi Bill and Marsha, My 47 year old husband has DCM and CHF with an EF 20-25%. Regarding "flash" CHF, I'm an RN working 2 years ICU and open heart and 5 Years step-down. You really don't want flash CHF or pulmonary edema; it's the type that can kill you quickly. Where I work, when someone goes into flash CHF they are relatively fine and then within about 30 minutes or less they are in full fledged CHF. If they weren't close to a hospital or in a hospital when it happened, they would not likely survive. This term may be used differently in other facilities. It's as if rather than your body slowly over a few days or weeks has more trouble not being able to handle the fluids in the body and you gradually become more fatigued and short of breath, these symptoms happen suddenly and it's a real emergency. What I don't know is if once someone has experienced flash CHF epsiode if they are likly to have the same experience again or not. I hope this helps a bit. nuffanne@netscape.net


Cheryl, May 2, 2000 - Hi, My husband saw the Ochsner heart transplant people yesterday and we are just so frustrated! He had a TEE and pulmonary stress test last week. Now they want to schedule a regular echo! They say they need their own baseline echo. Why didn't they do it last week when we were there?! They're saying he has moderately severe aortic stenosis along with a damaged heart muscle. They don't "think" valve replacement is an option. They say the disease is progressive but that he can live "many years" with the meds. He wants to know how long and no one can tell him. He feels great right now but they want him to start on Coreg. He sees no need to take it when he feels so well. From reading these boards we know the side effects are dizziness and extreme fatigue. He wants to work full time. How can he do both? What good is a remodeled heart due to Coreg if you feel too tired to enjoy it?
     Also, the only thing they told us about the pulmonary stress test is that it shows he has CHF. Shouldn't they give us more detail than that? We've been there twice and seen 2 different doctors. It's apparent they're reviewing Jim's file "on the fly" before they enter the examining room. How can this be good care? Yet these are the "CHF specialists" that this site and others say we need. Our hometown cardiologist seems much more interested in Jim as a patient and a person. Is feeling well a good reason not to add Coreg? cheryl1cng@aol.com


Jon's May 2 reply to Cheryl's May 2, 2000 - Hiya Cheryl, I certainly understand your frustration. I'd feel the same in your shoes. No, the doctors your husband is seeing are part of a transplant team and while they may be extremely knowledgable about CHF, they are not what I mean when I use the term "CHF specialist." I mean one doctor who sees you each and every time you go to the clinic, who becomes familiar with your particular situation and takes care of all your heart-related treatment all the time. The transplant doctors are on a rotation and are concerned with transplants. They will of course try to improve your situation so they can delay giving you a scarce donor heart as long as possible but their main field is heart transplant. You are seeing "a team," not a specialist. This can result in impersonal care. You will have to voice these concerns to the doctors themselves and insist on answers if you want to resolve the situation. It's not easy, especially since we always have to confront doctors on their own "turf" but it is necessary at times. Take a long look at my page on CHF specialists and you'll see that I cleary believe that not only is a CHF specialist important but that he must be the right doc for you!
     Yes, they should be releasing all test results to you and explaining them in detail. If they do not, corner them and insist. Many people believe that if they insist on things with the heart transplant team, it will prejudice their chances of getting a donor heart, but if that is the case, you are seeing a substandard team of doctors and cannot rely on them anyway. It is their responsibility and their job to be certain you fully understand your own situation and all your possible options. Unfortunately, few doctors live up to that responsibility, so you must learn to be assertive.
     About test scheduling, I'd say be understanding. Heart transplant units are usually buried in urgent testing and have a difficult time making sure everything is as convenient for patients as everyone would like it to be. They do an incredible amount of patient care that is highly varied and usually urgent, so try to cut them some slack on this one.
     Coreg is an issue that you need to understand a few things about. First, most of the people who feel a lot better because of Coreg rarely post here. People come here when they are having problems or when they want to warn people about a bad experience they had with a med or food or test or whatever. Many CHFers actually feel much better, with more energy, after adjusting to Coreg. Personally, titrating my dose was a snap and I had only very brief problems with mild lightheadedness. I had no dizziness and not much fatigue. My CHF has progressed despite Coreg and now my ACE inhibitor and Coreg add to my fatigue. It's impossible to know for sure whether I would be even more tired without these meds due to disease progression and lowered heart function, though. Like I said, it's a trade-off. Another thing to be aware of is that especially if you have CAD (coronary artery disease or blocked arteries) it is dangerous to stop taking beta-blockers once you are on them. There is an adjustment period to take into account also, which lasts for 3-9 months as your dose is raised and your body adjusts to a different response to naturally produced hormones. It could be a breeze, it could be just annoying, or it could be devastating. There simply is no way to know before trying. The main thing to remember is that it is your choice.
     My advice is to read, read, read: everything you can find on Coreg and beta-blockers as they relate to CHF. Then talk to your husband's doctor (with hubby there obviously - I am assuming you are partners in his care) and honestly and bluntly state your concerns. Bluntly. No kidding - you cannot afford misunderstandings on life and death issues! Make sure the doc really understands that life quality is very important to you right now and that longevity is not the end-all doctors often make it out to be. This conversation will also give you a good idea whether or not this doctor understands that you guys are his boss and not the other way around. Establishing that, and being sure the doctor is aware of your priorities and will honor them, is critical to your care. These are weighty issues and you need to address them with the seriousness they deserve. You bring up good questions - take them to the doc and get some answers. Jon.


Shawna, May 2, 2000 - Hi, This is a wonderful site. Thank you so much for all the hard work that has gone in to it. However, I need a site like this about people with strokes. I am doing home care for my Grandmother who is 83 years old. She has had multiple strokes and is terminal and I would love to find a site like this one about strokes. If anyone can help, please let me know. Thank you, Shawna. RescuedPug@aol.com


Bridget, May 2, 2000 - Hi, My husband was diagnosed with severe cardiomyopathy in March. He was referred for transplant to Barnes in St. Louis, Missouri. Because of his diabetes he is not a candidate. He just had a below the knee amptutation on his right leg a month ago. He has a problem with vomiting. The doctors have checked him over and his medication but they cannot find anything wrong that would cause him to vomit. The home health nurse said she has other cardiomyopathy patients who vomit a lot. Has anyone else gone through this? We are at our wits' end. He takes Tigan daily. badgar5@cs.com


Delores Price, May 3, 2000 - Hi, I just wanted to thank Jon and the rest of you for the past few months. I have never posted before but I did get some useful information and comfort from this site. My husband of 36 years was diagnosed with CHF among other things in December. I lost him on April 26 at the age of 55.
     With God's help I will get through this terrible time. I have 2 wonderful children and a beautiful granddaughter that will help. Please pray for me and my family as I will continue to do for you. He is now with God and I know he is well and happy, and I will see him again some day. God bless each and every one of you. I pray that you will find the strength to get through this. price5@inetone.net


Karen D's May 3 reply to Delores Price's May 3, 2000 - Dear Delores, I hope that you will continue to receive comfort in the thought that your husband is well and happy and that you will be together again some day. My husband is the same age as yours and we have been married 33 years, so I can imagine how hard it must be for you right now. I hope your 2 children and granddaughter live close to you. You will be in my prayers. Karen. bdeit@cfl.rr.com


Cheryl's May 3 reply to Jon's May 2, 2000 - Hi Jon, Thanks for your encouragement. It's very helpful. Jim saw his regular cardiologist today and we feel encouraged. He actually gave us the results of the pulmonary stress test. Jim scored 27%. They said 40% and up is normal but this seems fantastic to us. If 13% qualifies for a transplant, 27% seems along way from that. Is this because of the meds or is his heart in that good of shape?
     Even though Jim doesn't qualify for valve replacement because of the damage to his heart muscle, we feel much better. Are we just "kidding" ourselves or may he maintain a normal life for many years to come? His doctor did talk him into the Coreg but he will monitor him from here, and he won't have to make the trip to New Orleans every 2 weeks. We want to take meds and forget CHF for awhile. Of course, we will restrict fluids and salt forever. He also needs to get about 50 lbs off. Any suggestions? The food in South Louisiana is sooooooo good. Thanks again for your support. I have learned so much from this site. Keep up the good work. cheryl1cng@aol.com


Jon's May 3 reply to Cheryl's May 3, 2000 - Hi Cheryl, I'm glad to hear the test results were pretty good. You know, a lot of how you look at your CHF is a matter of personal attitude, and isn't necessarily right or wrong - being "too optimistic" or "kidding yourself." Personally, I'd say a vo2max of 27% is something to be pleased about. My last one was 13.5%. I do it again May 9 and will try to get pictures so everyone can see what the test looks like but I don't have a scanner myself. :-( There is no way for me to know how much of that is due to his meds, but this I do know: the more he exercises and maintains his overall "fitness" the higher his vo2max numbers will be and the better his quality of life will be as well. Every day exercise increases our beat-up bodies' ability to use what oxygen our heart can supply.
     He may live a normal life for many years or he may not. It is a lot more likely than it would have been 5 years ago, but you just never know for sure. My advice on losing weight is simple: Eat less. That is a bit easier to do if you eat 6-7 times a day and eat really small portions. Once you get used to it, you'll find it a lot easier to cut back on daily total food and calorie consumption. I also say forget about that low-fat everything and watch the calories instead - one man's opinion. According to my CHF doc, I now need to lose one more lousy pound and I'll be out of that "obese" classification. ;-) Jon.


Emily, May 4, 2000 - Hi, I am hoping someone can help me to identify brand name products that are low in salt, specifically

EmilyHN@aol.com


Patricia S, May 4, 2000 - Hi, We have been used to eating out; not fast food, but moderate restaurants. What is good thing to order? My husband is on a fluid and low sodium diet. pgsam@bellatlantic.com


Ellen S, May 5, 2000 - Hi, I really enjoy this site and check into it often. I have a question that maybe someone might know about. My husband was diagnosed in August of 1998 with CHF and cardiomyopathy after suffering 2 heart attacks in a week's time. Before his heart attack he had normal blood pressure. Ever since he became sick, his blood pressure runs very low and 90/55 is good for him now. He takes 0.25mg Lanoxin, 20mg Zocor, 20mg Vasotec twice a day, 120mg Lasix twice a day, 20mEq K-Dur, 5mg Coumadin, 500mg magnesium, 20mg Prilosec, one mg folic acid, 325mg Iron ferrous sulfate, and 150mg welbutrin every day.
     My question is this: Does anyone know if these medications can cause high body temperature? Our weather has become warmer but not hot. He is so miserable because he feels so hot most of the time. We finally turned on the air conditioner today. We were at the hospital today and it seemed real comfortable to me, but he was so hot that he was sweating all over. He did have a problem last summer when it was very hot but I am wondering if anyone with CHF and on a lot of medicines have the same problem. He froze me out in the van on the way home because he turned the A-C on high. Once he cools down he is okay as long as he stays in the A-C. If anyone knows anything about this, please let me know. I would really appreciate it. ESmith2673@aol.com


Todd K, May 5, 2000 - Hi, Has anyone heard of biventricular pacing? My Father has CHF and we read an article on this and it seemed to be promising for CHF patients. Is it from a company called Medtronic? I believe that it is in trials right now. This is a great site, Jon! tkoenig@adsionline.com


Jon's May 5 reply to Todd K's May 5, 2000 - Hi Todd, Thanks. Have you read the ICDs & More page? Also, try the text files available for download. Jon.


Gus R's May 5 reply to Ellen S' May 5, 2000 - Hi Ellen, As usual I have no answers but that doesn't stop me from putting in my 2¢ worth. Seriously, if you get any answers by direct e-mail, I'd appreciate you sharing them with me or posting them for everyone. I don't know how common this problem is but I have it and so do several other CHFers I know of. My problem is more noticeable when I go from a cool area into a warmer one. A closed up car is the worst for me. If I absolutely have to close and lock it, I start the engine and run the A-C for a while before getting in or send my wife out to do it. :-) Generally in the summer I do fine going inside as long as the building isn't actually hot. I do have problems going inside in the winter if the outside-inside temperatures are more than 40 or 50° different.
     My pea-brained guess on the cause of this is the same as many of our other problems: poor circulation. I think our bodies cool themselves by perspiration and increased blood flow, and a bum heart doesn't do well at best, so increasing it's output is just a dream for many of us. If we were cars, a new water pump would probably solve the problem. Best wishes, Gus R. gus13@net66.com


Karen D's May 5 reply to Patricia S' May 4, 2000 - Hi Patricia, We still go out to eat, just not as often. Bill is careful to ask how a particular dish is prepared before ordering it, if we're not sure. We like to go to places that have a large salad bar since he can get quite a variety of fresh fruits and vegetables, and can control the amount of dressing he puts on. He stays away from most of the mixed salads like potato, macaroni and three bean, since they will be very high in sodium. He usually orders meat or fish that is grilled or baked, not fried; and gets a baked potato. His cardiologist told him that he is allowed to eat what he wants one meal a week. This might not be true for everyone though, and he still is careful and doesn't go overboard. If you are used to eating out several times a week, you might want to call your favorite restaurants and ask them to tell you the sodium content of their dishes. Karen. bdeit@cfl.rr.com


Jon's May 5 reply to Karen D's May 5, 2000 - Hi Karen, I hate to say this but according to Dr. Marc Silver's book, "Success With Heart Failure" (page 76) many salad bar greens and vegetables are sprayed with a preservative containing sodium to keep them looking fresh longer. :-( I assume you have to ask to find out whether any particular salad bar is so sprayed. Jon


Karen D's May 5 reply to Emily's May 4, 2000 - Hi Emily, You asked about brand names for a few low sodium foods:

  1. I buy Bumble Bee diet low salt tuna, chunk white in water. It has 35mg of sodium per 2oz, which is a serving size
  2. There aren't too many store-bought breads that are low in sodium, but if you contact Don Gazzinaga at Don@megaheart.com, he will probably be able to send you some recipes for home-made low or no-sodium breads
  3. Soup: Again, store-bought soups have loads of sodium in them. Check out Jon's recipe corner to see if there are any soup recipes there. I make a vegetable soup from scratch but don't really have a recipe. Usually what I do is to brown a little lean hamburger meat (either the 4% or the 7% lean) with some onion, then add a couple of cans of No Salt Added Stewed Tomatoes (Del Monte has come out with several No Salt Added canned vegetables), add leftover vegetables or a bag of frozen mixed vegetables. Add water as needed and simmer it. You can add pasta, seasonings, etc,... Just don't add salt
  4. Baking powder: I use Featherweight, which is sodium free. You can order it from Pete at Peiden@skypoint.com, along with a whole lot of other low or no-sodium products (Jon's note: See this page)

I hope this helps. Karen. bdeit@cfl.rr.com


Delores, May 5, 2000 - Hi, My name is Dee. My mother has CHF, she is 65 years of age. She is on medication: Lanoxin, furosemide, Zestril. Her doctor informed me last week over the phone that she was in her last stage of CHF and all I can do is make her comfortable. I feel very helpless and also angry about how I was informed. She has always been very independent until 3 months ago. I have taken her to the hospital 3 times in the last 2 months. Each time I call him I feel like he's trying to get me off the phone. She started retaining water and now she spits up blood. He referred her to a lung specialist for more tests. His answer to any question I ask is, "Her body is breaking down; she's in her last stages."
     Can anyone help? I have read the information and she has a lot of the symptoms. She's able to move around and do for herself. She has good days and bad days. I have been searching different sites, and I ran across this one. I would really appreciate any suggestions. djstubbs@west.raytheon.com


Jon's May 5 reply to Delores' May 5, 2000 - Hi Delores, Get her a new doctor. Now. Be sure he is a CHF specialist, not a regular cardiologist and certainly not an internist or general practitioner! See this page for more and see this page for some doctor finders. Also, please post your geographical location so any readers in your area who know a good CHF doc can send you their name. And or course, read The Manual! Jon.


Karen P, May 6, 2000 - Hello, Has anyone undergone peritoneal dialysis? If so, can you comment on the pros and cons? Also, has anyone's heart failure progression led to kidney failure too, and had to balance the opposing treatments for both? Just looking for some insight. Karen. phillik@televar.com


Karen D's May 6 reply to Jon's May 5, 2000 - Thanks for the information, Jon. I always did mean to buy Dr. Silver's book - now I know I'm going to get a copy! We had no idea the salad greens might be sprayed with preservatives. Karen. bdeit@cfl.rr.com


Loretta M, May 6, 2000 - Hi, Thankfully and finally, my 67 year old mom moved in with me at Christmas, denying the obvious to me: congestive heart failure. She's been denying this for 2 years. Jon, I'm learning to get her a useful heart management team and so far only the PCP stays. Four days ago Nancy Lamb, the neurologist, was supposed to discuss and approve adjusting after testing Mom's Lanoxin level. Next she discusses dropping the aspirin because it's desired effect is duplicated with 2 other meds. How all these cooks her PCP, her soon to be ex-cardiologist and this overly experimental nuerologist have all been changing and duplicating Mom's med!
     Mom's lack of clarity about her own feelings and symptoms adds to this bad team care. Next thing, Dr. Lamb is getting my very nervous Mom to say she's having seizures and tells her she must get on Dylantin today. I was there when my Mom asked me to help her undress recently and she was all freaked that she couldn't fly to Chicago from Los Angeles for a grandson's college graduation this weekend. After massage, herb tea and supportive talk, she was a glowing confident women and there were no such uncontrollable shakings. Yet she allows Dr. Lamb to draw imaginary "feels like it was shaking; it must be seizures" out of her. I asked her to hold off till we get information other than what Dr. Lamb said. My mother tried to engage me in the game of asking me "What is your opinion?" I confirm that I am of the opinion I understood Dr. Lamb, but I don't think Dr. Lamb understood us.
     Mom's in Chicago and I'm on the Net and after a brief look around, I can not see any connection between Mom's 2+ years and ongoing better management of her CHF and seizure, Dylantin or convulsions. I am with her nearly 24/7, have most of my experience in opthalmology, massage and sales. My newest occupation is CHF detective. Where can you steer me to gather information about seizures being a possibly common after-effect after TIAs. Also, where should I look to learn how to have something like a seizure diagnosed? She thinks her leg was shaking uncontrollably but I was there and it was still, and she woorried that it felt weak. Dr. Lamb suggesting that starting Dylantin and having nothing to lose or risk is not acceptable medical reasoning.
     I suggested to my mother to first get herself comfortable again with her regular meds like before everyone messed them up. About 3 weeks ago she looked like she'd smoked a lot of pot and moved in slow motion. Upon inspection she's taking 2 different vasodilators her PCP gave her samples of, in addition to too much blood thinner. Mom remembers being given them at 2 different appointments with her PCP. She only saw her PCP once and I tried to explain to her that her PCP should not be in charge of adjusting her delicate heart meds and especially she shouldn't be trying "samples" the doctor herself knows little about. marms@icnt.net


Tracy M, May 7, 2000 - Hi, My Mom was just diagnosed last night with CHF. She is diabetic, just about blind, and has had a nasty cough for years. Two weeks ago she was diagnosed with pneumonia and treated at home. She had a very bad week with lots of vomiting. Dad took her in last night and they did another chest x-ray and came up with CHF. Her EKG showed a heart attack. We don't know if it was a while ago or recent, but probably recent. The one doc in the ER said it was acute, not chronic. I asked if that meant they could treat it and it would not come back. She was not too clear on her response. Does anyone know the difference? Is there such a thing as acute vs chronic? Is this the beginning of the end? I'm very confused. She's only 63. marshallthree@msn.com


Jill, May 8, 2000 - Hi, I have been looking for a place that tells the stages of CHF. Does anyone know of a place on the Net or know the stages themself? I have a family member that is in and out of the hospital for CHF and I would like to know what stage they are at. The doctors are not telling much about this. Thank you. lookingforamiracle@hotmail.com
 
Jon's note: heart classes are explained here


Jeanette's May 8 reply to Loretta's May 6, 2000 - Hi Loretta, My name is Jeanette. I would definitely seek new docs in your mom's case. I am sorry you are going through this with your mom. Try seeking a CHF specialist if you can. They are the best to deal with concerning CHF. Mine is wonderful and takes the time to listen to the patient instead of making the patient feel worse than when they came in.
     About the "seizures," are you sure they are seizures and not the onset of Parkinson's Disease? My grandmother had a bad case of the shakes and it sounds by the way you are describing the seizures that they aren'tseizures at all but she just shakes or feels like she is shaking. I would definitely get rid of Dr. Lamb and seek a specialist in the field of CHF first, and go from there. He may take her off some meds or adjust them so she doesn't feel like shaking anymore. They could be doing it too. Just something to think about. Good luck and God bless, Jeanette. jeanette1@93qmail.com


Lucy M, May 8, 2000 - Hi all, I haven't been here in awhile. My husband has been keeping me busy with other. I have written in the past about my husband and my auntie Maude. I am with my aunt now and she is not feeling well. She feels kind of dizzy and clammy. I would like to get your opinion on her meds. She is 84 and up until now has been able to go real well. Her legs are drawing, so much she doesn't want to walk.

  1. Coumadin as directed after blood work
  2. Lorazepam twice daily
  3. 240mg Cartia XL daily
  4. 100mg Amiodarone daily
  5. 32mg Atacand daily
  6. 5mg Prazosin daily
  7. Vioxx as needed
  8. 25mg spironolactone daily
  9. 40mg Lasix daily

Any help would be appreciated. lucy2u2@webtv.net


Wanda G, May 10, 2000 - Hi, I have not posted to this site before, however I would like to tell you how much it has helped. My husband has CHF. He suffered a serious heart attack in December of 1999 and is inoperable. We have explored bypass and have been assessed by the Cleveland Clinic and it has been determined that he would not survive any type of surgical procedure. We are living with that and right now he is doing very well on his meds (fingers crossed). Our doctor is putting his name in for a study involving 2 pacemakers. My biggest problem right now is the number of friends and acquaintances who insist we should be giving him chelation. All of the research I have done indicates arteriosclerosis and does not address damaged muscle tissue and reduced left ventricle function. Am I the only one to hear how everybody's aunt or mother or cousin or father in law lived for 20 years and walked 10 miles uphill both ways? I would certainly not want to ignore something that could help, so I would appreciate any feedback on chelation. wandagram@home.com


Jon's May 10 reply to Wanda G's May 10, 2000 - Hi Wanda, You're right. While chelation can do wonderful things for certain health problems, it will do nothing to restore heart function due to damaged, scarred or hibernating heart tissue. My own mother benefited from chelation but it was for a strange form of arthritis. So I do have a pretty open mind on the subject and have researched it, and found just what you found. It might be worth a try for atherosclerosis - or not - but not for damaged heart muscle. Jon.


Jon's May 10 reply to Tracy M's May 7, 2000 - Hi Tracy, Acute heart failure is a single "episode" of CHF, which manifests itself in rapid onset of fatigue; shortness of breath, especially on exertion; swelling of the lower legs, feet and stomach; lightheadedness, etc,... An acute episode is usually caused by an inflammation of the heart muscle or by a non-heart-related health problem putting temporary strain on the heart.
     Chronic CHF is when the heart muscle itself has been damaged (weakened) and can no longer perform properly and is not expected to improve, leaving the person open to episode after episode of CHF if not properly treated with daily medication, proper diet, exercise and other therapy. Let me know if I didn't explain it very well and I'll try again. :-) Jon.


Wanda G's May 11 reply to Jon's May 10, 2000 - Hi Jon, Thank you for the feedback. I felt I was right. I sometimes get very frustrated when people refuse to acknowledge Richard's condition. I know I have to be patient as it is their form of denial. Bill Drummond also sent me some information that helped. Your website has been an incredible source of information. I really enjoyed the recipes. Richard came home from the hospital on Monday and happily this is the best he has been. I think we may have finally gotten his meds right. The doctors were very aggressive with the diuretics and his edema is gone. Keep telling people to read The Manual; it is very important to recognize edema and to get on it. We are now going to enjoy our summer (optimistic I am) and watch that sodium consumption. I have accumulated a lot of resources and information, however it applies mostly to Canadians. I would be pleased to share if there are other CHFers from Canada who are looking. Once again thank you and I will keep dropping in for a look. wandagram@home.com


Annie, May 12, 2000 - Hi everyone, I am hoping someone can help me. My dad has had CHF for some time now but was officially diagnosed last month. He has been in and out of the hospital for 5 weeks. The latest trip was due to his lungs filling with fluid. Can this fluid retention be controlled with medication? Also, would anyone know of a CHF specialist in the North Jersey area? Thanks for your help. Annie. ademartino@earthlink.net


Michael, May 13, 2000 - Hi, I just found out that a very dear friend of our family needs a pacemaker. She is 86 years old. She is very reluctant to have this procedure. Can anyone provide me with any information regarding the success rate, possible problems, and any success stories? I would like to share this information with her within the next couple of days. Her doctor has scheduled the procedure for Thursday, May 18th. He is hoping she can be convinced to go through with it before Thursday. I would appreciate any information! Thank you, Michael. mrzavala@bentonrea.com


Janet Grooms, May 13, 2000 - Hi, My 82 year old dad had another heart attack last week, which further caused his heart's pumping action to deteriorate. He has had 2 bypass surgeries in 1978 and 1987), chelation, and numerous drug treatments. The cardiologist tells us that he may die suddenly or that heart rhythm disturbances will cause his death within a very few weeks. He is in the hospital now. They are trying to get his lungs cleared of fluid. He is on oxygen. If he walks any, he gets chest pains, however his heart attack was just one week ago. We are devastated. We want some hope and don't know where to turn. Please, can someone help us? sugarwhale@earthlink.net


Janet, May 13, 2000 - Hi, I just discovered this site and am very glad to have a place to share concerns and learn from others' experiences. My 52 year old husband had a heart attack and a 5-way bypass in July of 1998 and has never been very well since. He no longer works and is on civil service disability retirement. He has DCM and is in CHF. His ejection fraction is approximately 25%. When he had a cath in December of 1999, they told us that 2 of his 5 bypasses had failed. They said he would eventually need a heart transplant with a time frame of "months to a few years."
     He is able to do some things when he is very motivated. Today he is at a shooting match but he will suffer from it for days. He has regular chest pain, probably from the area of the heart where the bypasses have failed; shortness of breath, dizziness, and weakness. He seems to be coping fairly well, other than frequently talking about dying! I am not dealing well with the whole situation, even with medication and therapy.
     I've read enough to see that there are many others in much worse situations but I still find it difficult to cope with the situation now. Thanks for listening. I'm going to look for a CHF specialist in our area (near Louisville, Kentucky) because we haven't been thrilled with his cardiologist. dananjan@otherside.com


Jon, May 19, 2000 - Hi everyone, I apologize for the gap in forum activity. You can read about it here. Jon.


Phyllis J, May 19, 2000 - Hi, My husband is in class 4 CHF. He has been in a-fib for the past 5 days. He opted not to shock his heart as it had just been done 3 weeks ago. I know that there is only a little time left. He is on oxygen but still has bouts of gasping for air. Sleep comes in short bursts. It is so hard to see him suffer when I can't do anything to make it get better. He has been given Ativan for comfort but it doesn't help a whole lot. Can anyone tell me ways to make him more comfortable? He can barely walk (only with assistance)and eats very little. He pretty much stays in bed all the time now. The last 3 weeks have been rapid downhill slide. Help! I need some ideas. Also, thanks Jon, for this website. I have been searching for a long time and it's the very best that I have found. pjy920@aol.com


Darlinda, May 19, 2000 - Hi, My father was diagnosed with CHF on Monday, May 4th. He was swollen beyond belief. He was so short of breath that getting out of bed was a chore. He wouldn't eat and he said he wasn't hungry. He coughed a lot, with fluid comming up. The doctor did a chest x-ray and said his heart was enlarged. They put him on Lasix once a day and wanted to refer him to a family doctor even though any pressure to his chest from the doctor made him cry out in pain. He came home alright. He passed away on May 4th. Your site is a big help but I need some more answers; like why would doctor would send him home and tell him he would be ok. Do people diagnosed with CHF die so quickly? Any help would be appreciated. Please reply by e-mail to dross@brinet.com


Sue, May 21, 2000 - Hi, My name is Sue and I have been reading posts here for awhile now. My husband has DCM. Jon, I am glad your computer problem has resolved. It is a shame that such ignorance still exists! How did they find out you were disabled? It would anger me too, if someone treated me that way. Anyway, I hope it all works out. Take care! Attitude-sue@excite.com


Jon's May 21 reply to Sue's May 21, 2000 - Hi Sue, Unfortunately, only some of my computer problems have been solved. If you want to rag Comp USA on my behalf to try and speed up the rest of the repairs, you can find the info here. <g> Jon.


Bill D's May 21 reply to Phyllis J's May 19, 2000 - Hi Phyllis, Ativan? That's about as strong as Valium. If I was in the shape your husband is, I'd be demanding buckets of morphine! Has your doctor advised you that your husband's time is near? If so, maybe you should talk to the hospice people. They have a "cocktail" (also available as a suppository), that's out of this world. He won't feel a thing. That's what I'd want! Bill D. billdog@gate.net


Jeanette's May 21 reply to Phyllis J's May 19, 2000 - Hi Phyllis, I am very sorry to hear about your husband. If the drug isn't working, I would talk to his doctor again and maybe they can give him something else. It's just a thought. I am praying for you both that God helps calms your fears and gives you the rest you both deserve. May God protect you and ease your pain, and may He guide you in your time of need. Good luck and God bless you both. Jeanette. jeanette1@93qmail.com


Lora, May 21, 2000 - Hi, My dad has CHF and after taking the medication for this, he has noticed back stiffness and other symptoms. The latest thing he's noticing is one eye is watering a lot and his vision is slightly blurred in that eye. Can anyone tell me if this could be caused from the medicine? He has also had cataract surgery and implants. He doesn't worry but should I start pestering him to contact his doctor? Thanks, any information will be greatly appreciated. lc1sn@netpluscom.com


Jon's May 21 reply to Lora's May 21, 2000 - Hi Lora, I don't know about the eye problems. I hope someone else can help you with that. If he is taking a cholesterol lowering drug, that can cause back pain. Jon.


Kathryn, May 21, 2000 - Hi Jon, Rest up please. You are so good to do all this for all of us. From your own advice, when you're tired, rest. My son had a tired spell and was coughing a bit, and his weight was up. He fills up around the middle and never has any edema in his legs. I get concerned when I see him sliding down a bit. I always wonder about calling the doc. I hope you are back in the swing of things and feeling fine again; well, as fine as you can feel. <g> Take care and God bless, Kathryn. Kathryncole@hotmail.com


Jon's May 21 reply to Kathryn's May 21, 2000 - Hi Kathryn, Thanks for the kind words. I am resting a lot the past 2 days and will continue to do so. I'm not even cooking the food around here next week so I can rest more. About being a good guy, I can only answer with Jesus' words: "Why callest thou me good? there is none good but one, that is, God." (Matthew 19:17). Still, I thank you for the thought. :-)
     Your son is not alone. My swelling occurs in my face, wrists, hands and abdomen, never in my legs. We all wonder whether to call the doc "this time" or not. It's one of the unpleasant uncertainties that make CHF so difficult to live with. Please feel free to call that doc whenever you think it may be necessary. It is better to be safe than sorry, and no one can legitimately fault you for it. Don't be a stranger. Jon.


Mary, May 22, 2000 - Hi, My Dad is 77 years old. Four weeks ago, he had a defibrillator put in. He was in CHF. He had a quadruple bypass 8 years ago. Up until this recent setback, he was doing quite well. Now he stays in bed all day and will not eat. He has lost 15 lbs and since coming home, he eats nothing. He says no one understands. Help! We are so worried. cbenj95044@aol.com


Jon's May 22 reply to Mary's May 22, 2000 - Hi Mary, We understand! Print out a bunch of posts from the CHF heart forum and from The Archives, and show them to him. He is not alone and maybe if he understands that, it will give him incentive to learn more about his condition. Be sure to print out The Manual for him as well! Jon.


Wanda G's May 22 reply to Phyllis J's May 19, 2000 - Hi Phyllis, My husband was on Ativan for awhile. It causes clumsiness and lack of coordination (listed side effects). Unless he needs it for anxiety, please ask the doctor for something else. If the doctors confirm that he is near the end, I agree with Bill D - call for some extra help. You can make him and yourself a little more comfortable. My husband was going through the same symptoms a little while ago. We went to the emergency room and our doctor admitted him. They were agressive with Lasix and modified his medications. He is much better these days. Please call the doctor and discuss this. I hope things improve. Wanda. wandagram@home.com


Natalie, May 22, 2000 - Hi, My name is Natalie and my father has been living the last 20 years with heart disease. He is on his third ICD and now also has kidney failure. He had one kidney removed 13 years ago. Now he has also gone into congestive heart failure and pulmonary edema, which is new to us. His heart has lost most of its pumping action. He is on the highest dose of amiodarone they will allow and the same with Vasotec. The only real fear he has is being shocked to death. None of our family fear death anymore. We don't pray he will get better now, we just pray for God's will to be done, whatever His will is.
     For people who have a hard time dealing with the thought of death, I suggest you read the book, "Embracing The Light" by Betty Eadie because Jesus is real and I think everyone should just put their faith in Him. Because death is not if, it is when, and people should know there is a better place. They should not fear it. We would like to keep dad here with us for a while longer but to look at him on respirators and so many tubes, we realize his mission is not over. He has proven so many doctors wrong that I think God is keeping him here so the doctors can know that God is in control, not them. They can only do so much, but without God they couldn't do anything. God works through them. laffin-johnson@ns.sympatico.ca


Todd K's May 23 reply to Mary's May 22, 2000 - Hello Mary, My father is 72 and went through a similiar experience last year. He has had CHF for over 5 years. Last summer he took a turn for the worse when he lost weight, lost his appetite and lost his energy. We didn't know what was happening. His cardiologist said this is what happens with CHF and that he had a 60% chance of survival for one year. This was unacceptable to him so he went to a Mayo Clinic to meet with CHF specialists. It is so important to meet with a CHF specialist. They were much more positive in his prognosis. They gave him a plan to follow. He started to work out slowly at first and has built up his strength gradually. Today his doctors are very encouraged and he feels much better and has more energy. He eats the right foods, works out, and takes his medications. There are also so many new advancements in the treatment of CHF that are coming. My Dad also has a defibrillator and pacemaker. I hope this helps. tkoenig@adsionline.com


Sherry, May 23, 2000 - Hello Jon and everyone, I have not written in awhile but I have been reading the posts very often. My mother turned 75 two weeks ago, which is a miracle in itself, considering what she has been through. She is extremely weak and we cannot seem to get her stabilized. It seems like every 4 weeks she ends up in the hospital with heart failure. She was just recently upped to 120mg Lasix twice a day instead of 80mg, so we shall see.
     I wanted to write that while my mother was in the hospital in March, I met a wonderful guy named Greg who is waiting for a heart. He has been in Columbia Presbyterian hospital here in New York since January. I met him when he was my mother's neighbor on the floor, but now he has been in the CCU for over 4 weeks. He is on everything I can think of: dobutamine, bumex, dopamine, zaroxolyn, and many more. The doctors say he is next on the list for a heart and last week a match was found but because he had certain antibodies they could not do the transplant. If someone could explain this to me, I would appreciate it. I thought that the antibodies would come after a new heart was placed.
     He is in the best of hands. That hospital saved my mothers life many times. I have never met someone with such strength and such a wonderful sense of humor. If he had a computer, he would be writing here all the time but in the meantime he wanted me to write that if anyone is having hard time, to stay positive and keep the faith. I would appreciate prayers for Greg to get a new heart soon and for my mom as well. Thank you all and God bless. szauderer@milbank.com


Jon's May 23 reply to Sherry's May 23, 2000 - Hi Sherry, I hope your mom does better after this meds change and that she manages to escape that 4-week cycle! Greg sounds like a great guy. It may or may not answer your question but you can get a good basic understanding of the transplant "matching" process here. Jon.


Janet L, May 24, 2000 - Hi, I've been reading with interest the messages on the board for those with CHF about chills. My husband Dan rarely has chills but he regularly has what we call "hot flashes" that come on very suddenly and last for 4 or 5 minutes. He gets very uncomfortably hot; enough to remove his shirt if at all possible and sometimes sweats. Does anyone else have similiar hot flashes? The doctors don't seem to have an explanation. His meds are:

He was originally on Lopressor also but had so much dizziness and extremely low blood pressure they eliminated it. Does anyone have any comments on whether he seems to be on the right medications for CHF? dananjan@otherside.com


Jamie's May 24 reply to Janet Groom's May 13, 2000 - Hi Janet, I just found this web site. My 87 year old grandfather lives with me. He was diagnosed with CHF 1½ years ago after his third heart attack. Up until 6 months ago he was very active. Now he won't do anything but sit in a chair all day and cry. He has a lot of trouble breathing. I asked his cardiologist what was going on and he said the crying is from dementia, which comes from clogged arteries and not getting enough oxygen to the brain. He said there is "quite a bit of fluid" around my grand dad's heart and if he wants it removed, it will require hospitalization. What procedure do they use to do that? My granddad refuses to go to the hospital. He says that they can't help him. He takes 20mg Lasix a day, Tenormin, Coumadin and sometimes a nitro patch. I think that he also has some degree of kidney failure but the doctor won't give me specifics and since my grand dad is almost deaf, the doc won't talk to him either.
     It's hard to deal with this, not knowing exactly what his medical condition is. I am his only caretaker. I don't have any idea where this condition is going. What should I look for as far as knowing when to take him to the ER? He has really bad days where he just lays in a chair and gasps for breath but he won't let me call an ambulance or take him to the hospital. Any advice would be appreciated. Thanks. AnalyzeThys@aol.com


Matt, May 24, 2000 - Hi Jon, Thank you for this web site. My dad was recently diagnosed with CHF. I'm scared stupid and am learning as fast as I can what I should be doing to help him. I was wondering if anyone knows a good CHF specialist in the Dallas, Texas area. Thanks. meadams68@home.com


Jon's May 24 reply to Jamie's May 24, 2000 - Hi Jamie, For what it's worth:

  1. If he has dementia, he may not be able to make his own health care decisions properly. I would really press the doctor - I mean, press him severely - for an opinion on this. If you believe your granddad is making decisions that are not clearly reasoned, you may need to seek legal power to make those decisions for him, and see an attorney immediately before bad decisons kill your granddad
  2. If he is just depressed and his doctor is totally clueless (he sounds like he may be), your granddad may need to be seen by a psychologist, psychiatrist or even just a general MD who is familair with depression in elderly people. A start may be to print out The Manual and see if your granddad is interested. It's always possible he just needs to know that his illness can be treated successfully to spur his interest in medical care.
  3. Be sure one way or another that if he is capable of understanding, that your granddad really does understand that with good medical care, he can change his diet a bit, take the right pills, and he will feel so much better he won't believe it. People here are living proof of that and we aren't theories in some doctor's book - we're real people just like him! Try to coax him into learning about his illnes and how to cope with it. Naturally, I suggest The Manual but whatever works! Get him to understand that he can feel a lot better. It is possible!

I strongly suggest that you get him to another doctor - fast - even if the only way to do so is to take him the ER for one of the "episodes" you describe. Many doctors do not treat elderly people with CHF the same way they treat younger CHFers, even though the medical guidelines are the same!.
     Any time he has fluid-caused swelling along with a lot of difficulty breathing, you should get him to a doctor. He needs a short course of intravenous diuretics (a day or less will usually do it), which will make him pee like crazy and take that fluid off. Then he will need to be given the right pills to keep that fluid from coming back. He also needs to be on a low-sodium diet to keep that fluid off. It's all in The Manual. Jon.


Bill D's May 24 reply to Janet L's May 24, 2000 - Hi Janet, I have a Mayo Family Pharmacist CD so's I'm the expert on medicine side effects. (Yeah, sure. <g>) When I looked up Zoloft it said: "Less Common - Flushing or redness of skin with feeling of warmth or heat." People here have been complaining about hot flashes ever since I got here. I never looked up Zoloft before.
Karen and Bill D sent me this:

Q: How many women with PMS does it take to change a light bulb?
A: One. And only one! And do you know why it only takes one? Because no one else in this house knows how to change a light bulb. They don't even know the bulb is burned out. They would sit in this house in the dark for 3 days before they figured it out! And once they figured it out, they wouldn't be able to find the light bulbs despite the fact that they've been in the same cupboard for the past 17 years! But if they did by some miracle actually find the light bulbs, 2 days later the chair that they dragged from 2 rooms over to stand on to change the stupid light bulb would still be in the same place! And underneath the chair would be the crumpled wrapper the stupid light bulb came in! Why? Because no one in this house ever takes out the trash! It's a wonder we haven't all suffocated from the piles of trash that are 12 feet deep throughout htis dump! It would take an army to clean this up!.
     I'm sorry, what did you ask me?

Bill D. <g> billdog@gate.net


Joy S' May 24 reply to Matt's May 24, 2000 - Hi Matt, Consider Dr. John Duncan from the North Texas Cardiovascular Associates. He is my cardiologist. I haven't felt this good in years. I will e-mail his office number to you. He practices at Methodist Hospital and Charlton Methodist. enjoy2@yahoo.com


Eileen C, May 25, 2000 - Hi, I'm searching for information concerning my father's recent death from CHF, among other conditions. He was on oxygen through the last days in the hospital. The day he died, we left him to go to lunch and he was alert but groggy and had been in pain for several days. When we returned a couple of hours later, he had died. Here's my question: He had removed the oxygen mask from his face. I am haunted by the question whether he removed it struggling for more breath or whether he removed it to end the struggle. Does anyone know which reason is more likely? I haven't the nerve to raise this with his doctor, It seems too personal for me and too trivial for him. Thanks for any information you can provide and special thanks to Jon for this terrific resource. Please answer by e-mail to tennjconway@msn.com


Sherry, May 25, 2000 - Hi, Thanks Jon, for your thoughts. I just got to work and had to write because I am very stressed right now. Greg called me yesterday around 4:30 in the afternoon and said that they have decided to do an LVAD pump today. I went to see him last night and needless to say he is very worried and upset. I guess they didn't want to keep him on all the meds for such a long time. I hear great things about the pump. I just wish they had found a real heart. He could really use prayers today. They will start it in a few hours so hopefully I will have some news tomorrow.
     Mom is doing okay. She started back on digoxin last night for the irregular heartbeat, also the new dose of Lasix. Today is a nice day here so hopefully she will get some fresh air this afternoon. Thanks all for listening to me and please pray for Greg today. szauderer@milbank.com


Janet L's May 25 reply to Bill D's May 24, 2000 - Hi Bill, Thanks for a great message. Dan and I both got a good laugh from the light bulb story, and laughter is good medicine. dananjan@otherside.com


Pat Y's May 26 reply to Eileen C's May 25, 2000 - Hi Eileen, My father was hospitalized with CHF along with COPD. He kept taking his oxygen off, although he was very coherent. He could answer questions but he really didn't carry on any conversation. Like you, I was gone for a couple of hours. Upon returning, my father had died. I feel that he was removing his oxygen by choice. He had fought for several years with COPD (chronic obstructive pulmonary disease). I think he was tired of fighting and just wanted to end the struggle. My 2 sisters and I respected his choice. All 3 of us told him it was okay to die if he wanted to. I was diagnosed with idiopathic DCM and CHF several years after my father's death. I hope my son will respect my decision if and when I should choose to remove my oxygen. PTYoumans@aol.com


Judy H's May 26 reply to Janet L's May 24, 2000 - Hi Janet, My husband also had the hot flashes you described but over the course of 3 months it progressed to the point where it was almost continuous. After an extended hospital stay, an ICD implant, and a big adjustment in his medications, his hot flashes finally went away. No one could give us an answer as to the cause until on a follow-up visit to one of his cardiologists, the doctor said it was from his adrenal glands working overtime to compensate for his failing heart. Prior to that he was not being treated properly for his CHF. His PCP had been treating him for asthma! It seems that once my husband got the right medications and treatment, his sweats disappeared. My husband's grandmother also had CHF and suffered from the same sweating problem. Take care, Judy H. jmh@bright.com


Phyllis J's's May 26 reply to Bill's May 21, 2000 - Hi, Since my last post we have changed medicines to address the a-fib issue. He is now on dilacor and his heart is back to a regular beat. However, one of the side effects of the drug is edema - just what he doesn't need. Over the past 4 days, he has had 2 massive injections of Lasix; this last time coupled with metolazone. The effects have been minimal but his lungs are clearer. He does have morphine and we have used it once. It is so powerful I think that it will be good down the line, but not now; only when he can't breathe.
     What I need to know from anyone is, what do the last stages of CHF look like? I need to be prepared. Currently he is somewhat confused and has trouble with word retrieval. Can anyone tell me what's in store? Hospice has been great but I would like to hear from those who have been through this with loved ones. Just what I can expect and about how much time do these stages take? PJY920@aol.com


Rita C, May 27, 2000 - A special hello to Jon and everyone on this site, I am so glad to find you. My husband, who will be 53 next week, was diagnosed last month with cardiomyopathy and CHF. His EF was 24%. We are just beginning with doctors and meds. Frustration is the word of the day! We are already in search of another doctor who will listen and seems to have some hope. We have found two CHF specialists in Dallas but none in Fort Worth, Texas. We will go to Dallas but Fort Worth would be closer. Any help with names from someone would be appreciated. ritac999@aol.com


Pat, May 29, 2000 - Hi, My husband has had heart problems for about 15 years. He has had 4 open heart surgeries, mitral valve replacement, pacemaker and has in the last year had several attacks of CHF. The doctor said after the last echo that his heart is just getting tired. In the last several months he has had CHF attacks only at night. His problem is not always shortness of breath but not being able to sleep because hs says that he seems as though he is having a problem exhaling. Could anxiety be some of the problem? When he had this last problem of not sleeping and they took an x-ray, there was no accumulation of fluid. Has anyone else had these problems? pgsam@bellatlantic.net


Lora C, May 29, 2000 - Hi All, My name is Lora C. I notice there is another Lora on here too; how strange. I thought I was one of the only Loras around! Anyway, I need some advice. My father had a heart attack in December. Since then he has had a problem with severe weakness. Two week ago he began swelling up like a balloon in his arms and hands. This was followed quickly by large lesions on his hands and arms, then his kidneys began failing, followed by his liver. He was diagnosed with CHF but no one can figure out why his kidneys are shutting down. He has been in the ICU in a hospital in South Carolina for the last few weeks. He is lucid most of the time and is only complaining of weakness at this point. He's eating next to nothing and has had fluid in his lungs and around his heart the entire time.
     Can anyone tell me if their loved ones have experienced any of this? What is standard treatment in this type of case? The doctors have basically given up on him, saying they will be transfering him to a nursing home in the next 2 weeks because they do not have any other treatments for him. They told us today to start making funeral plans. I'm not ready to give up yet and neither is he. Can anyone give me any suggestions or links to get more information? Thanks! llc@jhu.edu


Beverly C's May 30 reply to Pat's May 29, 2000 - Hi Pat, I have had an episode of not being able to inhale or exhale voluntarily for a couple of hours during the night. I was also having a "crackling" sound upon exhaling, which now I think was rales. My cardiologist now believes that this is when I had my silent heart attack. I had been diagnosed with asthma while I was in heart failure by my family doctor and pretty much told to "handle it," so I didn't call 911, I just got through it. I was drained when it was over. I would believe that anytime you do not have voluntary breathing, there is a serious problem. Don't do what I did and puff on an inhaler! Good luck. macmember@earthlink.net


Kathy, May 30, 2000 - Hello, I live with someone who has CHF. I do have bradycardia but I'm lucky enough that it is a very mild case (no meds). I would just like to talk to the spouses and significant others who live with someone that has CHF. Sometimes it is hard. If anyone wants to talk, it would be great. Kathy. kathy_b24@hotmail.com


Kathryn's May 30 reply to Kathy's May 30, 2000 - Hello Kathy, My 26 year old son has CHF and lives with me. It is very difficult to live with someone who is afflicted with CHF and you always worry about someone you love so much. My son was diagnosed in August of 1999 and was in the hospital in very bad shape for 10 days. He has been through a lot since then with medication adjustments and tests, etc. Just being there for him to lean on has brought on a lot more gray hairs <lol> but I bless every gray hair I have because each one counts as one more day I am allowed to spend with him. He is worth every one of them. Please read everything you can on this wonderful site. Also be sure to read the other side where people who actually have CHF post. Prayer works, and just knowing you are not alone in this struggle will help too. God bless you, Kathryn. Kathryncole@hotmail.com


Bill D's May 30 reply to Lora C's May 29, 2000 - Hi Lora C, How old is your father? Remember, CHF is a bunch of symptoms brought on by a heart that can't pump enough blood. All the organs suffer when they don't get enough oxygen from the blood because the flow's too little. Back when my ejection fraction was 17, my kidneys were shutting down too. After the meds kicked in, my kidneys got better along with my heart. When we get to the class 4 CHF, we will die not only from a failing heart but from a failing liver, kidneys and all of our organs. Does your Dad want to go to a nursing home or does he want to come home? Perhaps you should talk to the hospice people. They will talk to your Dad, his doctor and you. Bill D. billdog@gate.net


Lora C, May 30, 2000 - Hi, Does anyone know the names of any CHF specialists in the South Carolina area? llc@jhu.edu


Joan S, May 30, 2000 - Hello and thank you so much for this site, Jon. My husband was diagnosed with cardiomyopathy in 1991 and has had ups and downs for the last 9 years. He was on Capoten for 9 years until his doc retired and he was referred to another doc. He is now starting Coreg, which I know is supposed to make him feel worse before he feels better, but just how bad are you supposed to feel? My husband has an EF of 11% and we hope that improves with Coreg. His new doc wants to put him on the transplant list but he doesn't want to go that route. He has a very difficult time digesting food and I wonder if this is the end stage. I'm not sure if we are in denial or what to expect. Please forgive the length of this. It is just so wonderful to have a place to exhale. Joan. msabook@aol.com


Jon's May 30 reply to Joan S' May 30, 2000 - Hi Joan, I hope others will post their experiences with Coreg, severe CHF, and more. I did not suffer anything other than a very mild case of lightheadedness when I started Coreg. My EF at the time was between 13 and 20%. Your husband's meds may be upsetting his stomach. It's something I would definitely look into - aggressively. By the way, if you wander through The Archives, you'll find that the longest posts are mine, so no one ever needs to feel bad about the length of their messages here. ;-) Jon.


Joanna T, May 31, 2000 - Hi everyone, My grandmother was diagnosed with CHF in March and was in the hospital again on May 22. The only medicine her doctor prescribed was Lasix and when she has trouble breathing, the doctor increases the dose. Is that the normal procedure? She has high blood pressure and is currently taking one tablet of zestril and tenormin daily. Also, could anyone recommend a CHF specialist in southern New Jersey or the surrounding area? Any information would be greatly appreciated.Thanks, Joanna T. jotoop@dellnet.com


Jon's May 31 reply to Joanna T's May 31, 2000 - Hi Joanna, The Zestril is an ACE inhibitor and the tenormin is a beta-blocker, both necessary to treat heart failure. The fourth drug recommended for CHF treatment is digoxin. So, as long as the doses are proper for her individual condition, she is receiving pretty good meds therapy. :-) Jon.


Lora C's May 31 reply to Bill D's May 30, 2000 - Hi Bill, My dad is 75 years old. He's been doing great up until the last 6 months. He was biking every day or swimming every other day. In December he had a heart attack while in Maryland. He has never completely recovered. Only recently did the CHF diagnosis come up. Shortly after that he developed kidney failure and liver failure, and has stopped eating hardly anything. They are talking about a rehab hospital for a while, followed by a nursing home. He does not understand that he is as sick as he his. He's a fighter and he is not going to go quietly.
     I'm hoping to be able to provide him with lots of information so he can decide what he wants to do. I live in Maryland and he lives in South Carolina, which makes it really hard. I wish there was a way to get him up here but they are giving us quotes of $5000 to transport him up here. I'm going to keep checking. Have you or anyone ever heard of the lesions on the arms? He has had them really bad and they are unable to figure out what's causing them. This is a great site. Thanks for being here! Lora. llc@jhu.edu


Kat R, May 31, 2000 - Hi, I haven't posted for awhile. My partner was doing very well, then had to go to Atlanta on business. He was gone 13 days and had pills for 10 days. He did very well and watched himself carefully when the pills ran out. Now that he is home and back on his heart meds, diabetic meds and gout meds, he is not feeling too well again. He seems down (depressed) and seems to have lost some of the "zip" he had before going south. Could this be because of the lack of meds for 3 days or could it be he is going into a mild depression again? Any ideas? Will there be these unexplained ups and downs? What can I do other than be supportive? Would it be better for him to be more active (he is still working 40 hours a week) rather than just sitting or sleeping in his rooms all weekend? Thanks for your thoughts, Kat R. corporate@jacobsmarketing.com


Judy H's May 31 reply to Joan S' May 30, 2000 - Hi Joan, My husband started on Coreg 4 weeks ago. He has had some breathing problems on it and was unable to step up the dosage from 3.125mg twice a day to the next step, which is 6.25mg twice a day. He tried the higher dose but he could not tolerate the shortness of breath. He's doing okay on the low dose and has already shown a big improvement in his energy level. He is determined that he will eventually go on the higher dose. He just needs longer to adjust and the cardiologist wants him to wait (we will be getting a second opinion on that). I also would be interested in hearing of any Coreg experiences - good or bad. Take care, Judy H. jmh@bright.com


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

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