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

Candy's 5-1 reply to Meg's 4-30     venting, coping & more
 
Charlotte 5-2     update & more
 
Linda M 5-2     seek help coping with son & his illness - questions
 
Connie 5-2     what to expect from drinking CHF friend?
 
Herb E 5-2     intro, very frustrated & more
 
Jon's 5-2 reply to Meg's 4-30     for what it's worth
 
Jon's 5-2 reply to Linda M's 5-2     coping
 
Jon's 5-2 reply to Herb E's 5-2     doctors, treatments, emergencies & more
 
Scott C 5-4     mom is very sick & more
 
Pam 5-4     Coreg vs Lopressor question & more
 
Ruthie A 5-4     update on my mom - good news
 
Virginia R 5-5     update on dad
 
Dina R 5-5     update on me and John
 
Meg 5-5     update, when it rains it pours, thanks & more
 
Jon's 5-6 reply to Karen P's 4-28     QOL questionnaire
 
Dina R 5-8     update on John, atrial tachycardia question
 
Loye 5-8     questions about my mom and her ICD
 
Jon's 5-8 reply to Loye's 5-8     Url of possible interest
 
Dina R 5-9     John's ICD went off & more
 
Dina R 5-9     Jon, please explain the May 17 thing
 
Jon's 5-9 reply to Dina R's 5-9     just taking one day off
 
Kandace 5-9     seek info & advice
 
Ron 5-9     mom died, dad's sick, seek support
 
Ben B's 5-10 reply to Kandace's 5-9     new meds & tv ads
 
Lucy 5-10     history, arm caths & more
 
Lucy 5-11     update, stress tests
 
Anna F 5-12     terminology questions
 
Anita Silvey's 5-12 reply to Lucy's 5-11     posts, tests & more
 
Tandy K 5-12     puffyness, ice cold hands episodes questions
 
Amber 5-13     pacemaker questions
 
Donna Finney 5-13     help! chemo caused hubby cancer, SSD & more
 
Ellen Smith 5-13     ICD & sudden death questions
 
Lucy's 5-14 reply to Anita S' 5-12     update, prayer request
 
Anna F's 5-14 reply to Amber's 5-13     pacemaker experience
 
Karen D's 5-14 reply to Ellen S' 5-13     ICD experience
 
Bill D's 5-14 reply to Ellen S' 5-13     ICDs & sudden death
 
Jim R 5-15     severe itching question
 
Martha Garcia 5-16     18 year old son has CHF, questions
 
Amy ? 5-16     seek CHF info
 
Jon's 5-16 reply to Amy ?'s 5-16     CHF info
 
Marion M 5-18     SS Disability process, thanks
 
Lucy 5-18     multiple cardioversions questions
 
Janie 5-18     sleeping pills, potassium, meds questions & more
 
Don W 5-18     depression questions & seek doctor in Austin
 
Dina Rice 5-19     update, driving & ICDs, emotions, & more
 
Charlie 5-19     anyone live around St. Louis?
 
Laura L 5-19     chelation questions
 
Pearl 5-19     Medspeak questions
 
Jon's 5-19 reply to Pearl's 5-19     your husband's report
 
Ellen 5-20     update on Wayne, SSD experience
 
Lynn 5-20     seek CHF info for my sister & more
 
Dina R 5-21     need Lee's address, many ICD shocks & more
 
Karen D's 5-21 reply to Dina R's 5-19     ICDs, driving, vacations, SSD & more
 
Sally R's 5-21 reply to Laura L's 5-19     chelation experience
 
Bea 5-22     how to deal with boyfriend's moods now?
 
Anna F's 5-22 reply to Dina R's 5-21     SSD, coping, update on Edward & more
 
Andrew 5-22     EF question
 
Virginia R's 5-23 reply to Don's 5-18     docs, clinics, update, prayer request & more
 
Donna F 5-23     SSD questions, update on Dave
 
Cloyd 5-24     Catscan questions
 
Jon2 5-26     news article about beta-blockers
 
Jon's 5-26 reply to Jon2's 5-26     info about beta-blockers
 
Virginia R 5-30     update on dad after cath
 
Virginia R 5-30     hospitals & caths, Coreg report
 
Liz C 5-30     hospice while still active? confused
 
Bette 5-30     questions about dad's end-stage options
 
Jon's 5-30 reply to Bette's 5-30     some end-stage options
 
Carolyn B 5-30     update, has anyone had this happen?
 
LeaAnna's 5-30 reply to Scott C's 5-4     in similar situation
 
Amber 5-30     update on Neil, life w/pacemaker questions


Candy's May 1 reply to Meg's April 30, 1999 - Hi Meg, You wouldn't be human if you didn't have all sorts of feelings. At times whining can be good and so can some understanding from those you love. Watch your own health as well as your husband's. You sound like a very strong person. I just wanted to let you know there are people thinking about you. Please feel free to vent anytime. GrPota@aol.com


Charlotte, May 2, 1999 - Hi, Last time I wrote, I told you my husband had his cardioversion done on Monday. After a couple of hours getting him home, he developed a cough that would not stop. He sat up in a chair all night because when he laid down, the coughing was worse. Tuesday night he ended up back in the hospital in heart failure again. His meds now are 2mg Coumadin, 20mg Monopril, 10mg Norvasc, 20meq potassium, 600mg Lopid, magnesium, 0.125mg Lanoxin, 25mg Aldactone, 20mg Lasix, 3.125mg Coreg, 200mg amiodarone, 1g Carafate and his insulin twice a day. I brought him home Saturday night. He has to have PT and BMP blood work Monday. Needless to say, what a shock! My husband says he feels like a walking drug store and is very tired. His ICD went off once while in the hospital and went off again today here at home, so I guess it is doing its job. DunninTN@aol.com


Linda M, May 2, 1999 - Hi, Please help me understand my 13 year old son. He was diagnosed in January with idiopathic dilated cardiomyopathy. His heart size was 5.2 and went to 4.8 and is now staying at 4.8cm. He is on captopril and digoxin. His EF is 34.
     He has some good days and some bad days. He is attending a modified school housed in a hospital for chronically ill children. He could not tolerate the hustle and bustle of the regular middle school. He reports much difficulty with being able to concentrate, read and learn new information. He has not been able to attend a full week of school since beginning at the hospital 4 weeks ago. Before that, he was at home with no schooling. Anyway, he will have some good days, which includes the weekend but then will need to miss 2 or 3 days during the week. I had him go one day, telling him that someone besides mom needed to see him when he was having a bad day. His regular school has made comments to him that "only he knows how he really feels and we can't have you 'fibbing'." This makes me feel terrible when I let him have some activities on weekends and then he is not able to attend the full week of school. Please help me understand how the body feels.
     His comment to me is that "nobody understands what it's like to have this thing inside of you that makes you feel terrible." I am caught between protecting my son's health and providing support for him, and the school, which does not really want to recognize that he has this condition, even with doctor's notes. Do other people have such fatigue, difficulty concentrating and with thought processes? I need help because I believe people think that I am being an overprotective mother who is enabling her son to avoid school. He enjoys being at the hospital school and hates being home alone. I am at work, except for a 1½ hour lunch that I am able to take to be with him in the middle of the day. I'm sorry for rambling but I have no one I feel I can talk to who can really help me with this pain and anguish. If my e-mail doesn't work, try me at monserrate-ia@juno.com. Thank you! monserrateli@dmps.des-moines.k12.ia.us


Connie, May 2, 1999 - Hi, I wrote you back in January about my friend who has CHF and also a drinking problem. She hasn't stopped drinking and won't get help. What should we expect to happen? I believe she might be drinking some through the week and almost every weekend. She's in denial about her drinking problem. We can't make her quit and she refuses to get help. Now I'm just wondering exactly what we can medically expect if this continues? cpsnow@webtv.net


Herb E, May 2, 1999 - Hi, This is my first time writting here. I found this site yesterday and have been printing everything on it. It was great to find someone with the same feelings I'm having. My fiancée, Barbara, was diagnosed (finally) with postpartum cardiomyopathy, heart failure, left bundle branch block and 2 leaky valves, 2 weeks after giving birth to our son, who is now 17 months old. She has been getting steadily worse over the past 18 months. She has been evaluated for a transplant but she is not sick enough, whatever that means. Her ejection fraction is estimated between 10-15%. She just scored a big fat 14 on her latest stress test and cannot walk from room to room without getting winded. In our quest for quality health care, I have taken her to 4 different tranplant centers. All we get from the doctors is that she too well for a transplant. For the 100th time, we do not want a transplant - just some quality of life!
     A certain doctor at a certain large transplant hospital in Philly keeps giving the answer. "I don't know." I am grateful for the honesty but if you don't know, get me someone who does. A doctor's pride is going to kill my baby. I have had to take a considerable pay cut to get a job with more flexible hours so I can take her in person. We were very happy with a doctor in New York but we simply cannot afford to travel that far. The parking alone for 3 hours was $37. We want to get this doctor back but I am afraid because of not going back she may not see her again. This doctor is considered by many as the best in the world. My taking her to many places may have backfired.
     Sorry this is so jumbled. I just have so many thoughts going and I'm typing as they come into my head. I am under a lot of stress every morning wondering if she is going to wake up. I feel bad for feeling bad because I am in relatively good health and do not want to burden her any more than she already is. Last night, I took her to a local emergency room because I knew she was in heart failure. Her neck veins were jumping, her abdomen was swollen and she had uncontrollabe coughing. A "doctor" sent her home saying she has bronchitis! We have been dealing with this disease for 18 months and I know heart failure when I see it! I'm sorry for all the anger. I'm just about to reach my breaking point and don't know what to do! Thanks for letting me vent. Thanks Jon, for this place, it's the best thing that's happened to us in a long time! raydeohed@hotmail.com


Jon's May 2 reply to Meg's April 30, 1999 - Hi Meg, I'm sorry to be so slow replying. My daughter and I seem to be going through identical colds and I think I'm getting the worst end of it. I'm unsure why he is off the heart meds if his legs are swelling up. I would question his doctors at length about this. There is no need to get upset with them but be firm. Remember that they work for your husband. They are not your boss or his boss; you are their boss. Ask for plain English explanations and if you don't get them, insist. A good doctor will have no problem with this. The stomach problems could be one of a multitude of things. When in heart failure, sometimes our livers swell and this causes stomach problems. Medications can also cause stomach problems as well as lack of appetite. Just being seriously ill can also cause a person to lose their appetite, and stress sure isn't helping in the stomach department.
     Your husband is sure to be on an emotional roller coaster for a while. The loss of his usual lifestyle is a very tough adjustment. I know all about that. Still, he is unsure exactly what his limitations will be, so remind him that this one is really a wait-and-see thing for now. This is hard to keep in mind at such a time but it really is true, and you need to remember it, too. My wife said I looked like an end-stage cancer patient when I was first hospitalized with CHF, yet here I am 4 1/2 years later, maintaining this site, so it really is wait and see. I have had to seriously adjust my lifestyle but I still have a lot of fun and I'm certainly not too sick to be ornery! Just ask my wife! <g> You can also e-mail her if you'd like - she's a lot nicer than I am. Her address is musicmom@geocities.com
     It is a normal reaction for a spouse to think they should put on their "best" face for the sick one when CHF strikes but I'm not so sure. You don't want to bemoan how much more you have to do with him sick, that's true. Still, you're human, a fact your husband surely knows by now, so remember that it's okay to discuss your everyday burdens with him the same as you did before he got sick. Ask his advice on some things and let him make some suggestions about coping. It might help take his mind off himself, which is the best way for him to maintain a good attitude right now. For what it's worth, you aren't whining. You're just upset, and who wouldn't be?! Self pity hits us when we're well, so it's certainly okay to dip into your fund now and then during a health crisis. Just don't make a habit of it. :-) And by the way, welcome to Jon's Place! Jon.


Jon's May 2 reply to Linda M's May 2, 1999 - Hi Linda, I'm a CHFer, not a parent of one, so I hope some other parents will write you, giving real life experiences with such a situation. I hate to say it but you really won't be able to understand what "the body" feels like with CHF unless you have it. It's another case of "walk a mile in my shoes." Take it from me though, fatigue has a whole new meaning for your son at times these days. He doesn't have the life experience most of us have when we get this illness, so it may be harder for him to distinguish between mental and physical fatigue, both of which are real, but don't always hit us at the same time. He also may have more difficulty when asked to gauge his fatigue. He simply has less to compare it to than us old folks do. Honestly, if anyone made a comment like that fibbing crack to my CHF kid, I might be inclined to have a chat with them. <g> Ask them if they would act this way with a child who had cancer. The difference is that they cannot see the heart problem, so they are not taking it seriously, as they would a "visible" illness. This is a real problem in social interaction even for us adult CHFers. People tend to not be understanding most of the time.
     On the flip side of the fatigue coin, he may use his illness to escape situations he is uncomfortable in. It's tempting to do so even for us more "mature" folks. I am not at all insulting your son or your parenting. I do remember being a kid though, and it would be a natural thing to do. The hard part is, of course, deciding when he is on the level and when he is not. A good old fashioned sit-down talk about this might be best now, before more conflicts arise.
     A list of his meds would help on the questions of mental fogginess. However, weakened heart function does mean slightly reduced blood supply and thus less oxygen to the brain, as well as to every other organ. So even without meds, he might experience a slight decrease in alertness. The usual CHF meds - especially beta-blockers - definitely make it tougher to concentrate and especially to learn new concepts. That's going to be tough on a child but I am being honest so you will know what you face.
     While not a parent of a CHFer, my own daughter has a chronic illness and I understand the fear factor and the wish to protect one's child quite well. You really will have to learn to balance his needs with your desires to prevent becoming an over-protective mother. This will be tough, but hey, parenting is never easy as far as I can tell and I've been doing it 16 years. <g> Welcome to Jon's Place. Don't be a stranger. Jon.


Jon's May 2 reply to Herb E's May 2, 1999 - Hi Herb, Venting here is fine - at least we understand where it's coming from. :-) I don't think bouncing around from doc to doc will hurt you as long as you settle down reasonably soon and start to rely on someone for the bulk of your care. Please remember that the best doctor technically may not be the best doctor for you. You want good judgement, that comfortable feeling which allows you to talk freely about sensitive issues, keeping up with current treatment trends, quick access, locale, wide range of in-clinic services and more in a CHF doctor.
     What you should keep in mind is that a quick resolution to her problems is not in sight, so you may have to work with a doctor to adjust meds and therapies to get the right "mix" for her, to compensate her CHF. Patience is tough to come by but it's necessary right now. Get that good doc and stick with him. Work with him and then gauge the results. That does not mean you should accept less than excellent care, but study CHF here and elsewhere, get familiar with the treatments and possibilities. Then settle in and work towards that "mix."
     CHF is often mistaken for respiratory illnesses, gallbladder problems and more. Be sure to read The Manual. It will get you off to a good start. If your fiancée is younger than 50, it's no surprise the ER doc looked for something besides heart failure first. Carrying a list of meds and a very brief history in her purse would be a very good idea, since it lets doctors know in an emergecy what her health problems are. I wear a Medic Alert bracelet that is engraved to tell the docs to look at my wallet card. In my wallet is a card that lists my diagnosis, all my meds, my EF, my contact info for doctors and wife, and which hospital I would prefer to go to so my own CHF doc will have access to me immediately if I am admitted. For ongoing care, a CHF specialist is a must. A regular cardiologist or internist just doesn't get it. CHF is too complex for them to keep currrent on changes in the field.
     I'm pooped and am still trying to fix my mailing lists so I'm signing off. Don't be a stranger. Jon.


Scott C, May 4, 1999 - Hi, I hope someone sends me a response. I am dealing with someone who has CHF (my mom). I think I take it worse than my mom does. I always was the wimp in the family. Anyway, she was diagnosed with CHFand cardiomyopathy approximately 9 years ago. They said it was a result of Rheumatic fever suffered as a child. She was told by her doctor that she had 5 years to live. Needless to say, she switched doctors. She watches everything and is convinced of the power of Q10. She was doing pretty well up until last week. Her ejection fraction was 22 in 1991 but had gone up into the 30s until last week. See, my mother had ventricular tachycardia last week and we almost lost her. She went into ICU and an AICD was placed in her. An echo was taken and her EF was 27, not too bad, considering what she went through. I think a MUGA would even show it stronger. I am worrying all the time. I just want to grasp onto something positive and go with it. She really has been doing well with it. She is 68 and I am too young for her to leave me! Has anyone had a similar experience? Please e-mail me any advice or support. How bad is 27 for an EF? Thanks. Scott Campbell. dscottcam@aol.com


Pam, May 4, 1999 - Hi, I have learned a lot about CHF by reading The Manual and all the comments by others dealing with this. My family first encountered this on Christmas Eve of 1998, when my 72 year old stepfather went into cardiac arrest but was successfully defibrillated and flown to a major hospital. Although he had been going to his local doctor for several months with the symptoms so many here have described, he was tested for everything but heart problems. He was immediately given an echocardiogram and diagnosed that same evening. Needless to say, we were very bitter that his local doctor had let this problem go on so long and weaken his heart so badly. The specialist told us he needed immediate surgery but would not make it through the surgery. However, he did have valve replacement surgery and continues to amaze even his cardiologist with how well he is doing. He did have pretty bad arrhythmia and had a defibrillator implanted before he left the hospital.
     Now, four months later, he is back to living a normal life. He is having some problems adjusting to medications. He takes Lanoxin, Monopril, aspirin and has been taking Coreg. His cardiologist has switched him from Coreg to Lopressor. My question is, will this do him as much good? He is having vision problems and says he is foggy headed a lot. Thanks for all the great information. I have learned so much and really appreciate this site. rjmars@aol.com


Ruthie A, May 4, 1999 - Hi, A while ago I told you about my mother's hospitalization with a near-heart attack and CHF. The doctors were not sure she would pull through. Since then, she has come home and adjusted well to her new medications. A couple of weeks ago she developed pneumonia after the flu and just barely avoided hospitalization again. She talked the doctor into letting her go back to her assisted living facility since there was 24-hour nursing available. I saw her last Saturday, and would you believe it? My mother looks awesome for an 81 year old lady! Her ankles are not as swollen as mine are, and she has more tolerance for exercise than I do! It's not fair :-) but I am delighted she is doing so well! It's tough having 2 CHFers in the family but we will rejoice in well-being while we have the chance. I hope you and your loved ones are doing as well. Ruthie A. rlaba@preferred.com


Virginia R, May 5, 1999 - Hi, Dad is scheduled for his heart catheterization on May 26. He is not feeling well at all. He had some fluid gain and finally had to take a Zaroxolyn. He lost 10lbs in fluid. That same day, he experienced nausea and a severe headache, and was not able to sleep. He said he thought it was because he couldn't breathe well (?) - his question mark, not mine. He is still not feeling well at all. We did call the cardiologist's office and they had him get some bloodwork done. I'm wondering if his Potassium isn't out of kilter again. I wish you all well. Thank you again for your support. giniroberts@hotmail.com


Dina R, May 5, 1999 - Hi, Just an update on John and me: He seems to be doing better and his ICD hasn't gone off since the first time, 3 days after we were home from the hospital. He's felt "weird" a few times, like he did right before it went off, but he's taken a Valium and went to sleep, trying to avoid a shock. His Prozac is kicking in and also a pain pill for the gout he developed, so he is a bit more perky. We both know it's the drugs but at this point, I'm just glad to have some of his old self back. We actually went camping (in a cabin) with 12 other friends this weekend, just to get away. John floated the Buffalo River with them and only got a few cuts. They took a bunch of stuff to stop the bleeding as I was nervous from the Coumadin but you've gotta have some quality of life and he did fine. He sure was worn out Sunday but it did wonders for the soul!
     This whole illness has kept him home so much more and our 4 year old is following him around now like a puppy. It has really brought them together. She didn't ever see him that much before and now he has time to play with her. They planted grass seed last week in our yard, planted tomatoes and spices all around. It's really touching to see how they have grown together. One of these days we'll get our bio in and some pictures of our little darling. Good luck with all of your loved ones this week. We go to the doctor and we haven't been to him since March as another person put in his ICD and we've seen her twice since. I wonder if they'll schedule any tests this summer, as we're coming up on 6 months with this on June 28. His EF was 10 in the hospital and I want to know if it's gone up. riced@gardner2.dsc.k12.ar.us


Meg, May 5, 1999 - Hi, Well, several blood clots later, Bob seems to be improving after 9 days in the hospital. He's back to getting in trouble with the nurses for misbehaving and conning 3AM ice creams. I wish I knew what comes next. Has anybody else developed blood clots as a result of CHF? The straw on the camel's back came Friday when my dad had a heart attack and was rushed to the emergency room with a blood clot in his heart. Is anybody familiar with Pink Floyd and "comfortably numb?" Well, I am uncomfortably numb. Dad's been diagnosed with - of all things - an arrythmia and is getting a defibrillator today, both look to me as the one with "experience," which I wish I did not possess at the age of 40! The only plus in this whole scenario is I simply do not have time for any boo hooing since husband and father are in hospitals 45 miles apart.
     Thank you so much to all who sent me e-mails from my original post. With your help, I've succeeded in breaking the weepy eye pattern I was falling into and am taking a much more aggressive approach to all these "problems" I have been blessed with. My numero uno problem is going to be an extremely mule-headed husband whom I know will try to do too much no matter how many times he finds he cannot. Thank you all very much. Meg. droim@aol.com


Jon's May 6 reply to Karen P's April 28, 1999 - Hi Karen, I haven't been ignoring you, just having a great deal of difficulty getting a copy of the "Minnesota Quality Of Life Questionnaire In Cardiac Failure" or "Minnesota Living With Heart Failure Quality Of Life Questionnaire" depending on who you ask. :-) I find that it is generally agreed this is the only QOL standard accepted in all clinical trials of heart failure but apparently, no one has seen fit to make it available online. I suggest calling your cardiologist and asking for a copy. I'd ask mine but I'm kind of lazy. <G> I have e-mailed the university where it was developed (as far as I can tell) but they haven't answered. Jon.


Dina R, May 8, 1999 - Hi, We went to the doctor yesterday and got some good news. They did an echo and found that John's EF has improved from 5-10 to 30. His left ventrical hasn't shrunk though and is still 7.12cm. He's gained 7 pounds and we really need to work on losing some weight. They think he may have sleep apnea. We don't have to go back for 3 months. We see the EP doc who put in the defibrillator in a couple of weeks and we'll see how much arrhythmia has been going on. They said he had atrial tachycardia - is that one bad? He hasn't had that one before, just V-tach and atrial fib. Have a good day, everyone! Thanks for all the kind replies and help you've given us. Dina. riced@gardner2.dsc.k12.ar.us


Loye, May 8, 1999 - Hi, My mother has had an AICD for the last 4 years. She is only 47. She did fine with it until just this past February, when it started going off, which was due to losing too much potassium. Since then she has been shocked approximately 30 times, if not more. Each time it happens, it takes the lidocaine and valium longer and longer to get her heart rate regulated. The doctor says this is ok, that's what it is there for. In the meantime, my poor mother is suffering something awful, physically and mentally. She is now at the point where she is wanting them to take it out because she doesn't want to go through the pain of it happening anymore. She will almost certainly die without it but I think she is so tired of the pain and worrying she has with it, that she almost has given up on living. I am so desperate for some new kind of treatment or anything that could help her. They try different meds but so far nothing has helped. They are going to discuss heart transplant but I'm afraid she can't wait that long. I keep thinking that as many advances as they have made in the medical field, surely there is something else to do for this. The heart med she is on is betapace and a load of others for various other things. I would greatly appreciate any suggestions or help someone may have. My mother means so much to me and I can't imagine life without her. Thank you. dlhead@cybertrails.com


Jon's May 8 reply to Loye's May 8, 1999 - Hi, try posting to the Cleveland Clinic message board, where a cardiologist will answer. Be sure to give a more detailed explanation of your mother's condition, though. www.medhelp.org/perl6/cardio/index.htm I hope this helps. Jon.


Dina R, May 9, 1999 - Hi, Well, so much for feeling better. John's ICD went off Friday night while he was taking a shower. He'd felt really crummy all day. I guess he's been trying to do too much and be too "normal" again. He'll be in bed, totally zapped, for a few days. I presume we'll know more about why it went off when we go have it read next week. I hope they can work him in on Monday. I hate not knowing. Now he for sure shouldn't drive and he will go nuts. Maybe he'll now know more about how bad it feels before it goes off and it will give him a clue about when to take it easy. jmrice@ipa.net


Dina R, May 9, 1999 - Hi Jon, What did you mean you will be off line on the 17th? Do you mean forever or are you taking a vacation? I am worried about you. Please let us know if anything is wrong. jmrice@ipa.net


Jon's May 9 reply to Dina R's May 9, 1999 - Hi Dina, I'll just be taking that day off from all electronic activities. :-) Jon.


Kandace, May 9, 1999 - Hi, Could someone please guide me in an appropriate direction so I can help my 80 year old dad? He recently went in for an angiogram and within a week of it, suffered 2 heart attacks. His doctors seem to be wiffle-waffling about his medications, while in the meantime, my dad is experiencing extreme lack of energy and can't seem to get ahead of this one. I saw an ad on TV that there is new medication for people with CHF to help bring up their energy level. Does anyone know what the ad might have been about? His doctor says his heart has definitely suffered damage and he's had to double up on Lasix to help with the fluid. My dad is trying to get healthy enough to make their annual drive from Florida back to Maine and then hopefully, we children can get more involved in his care. Any advice at all would truly be appreciated. Any advice on selected reading that might help us understand this disease would be great. Wagnah@aol.com


Ron, May 9, 1999 - Hello, This is my first time writing here. I don't know what to say to all of you exept that I need some support. I found this board May 8 and bookmarked it. Both of my parents have been suffering from CHF, my father since last summer and my mother just diagnosed in the last 2-3 weeks. Yesterday, I got a phone call from my brother telling me that my mother has passed away. This is all very sudden and I could use any support you can give me. We still have to take care of my dad. Ron. rejensen@transport.com


Ben B's May 10 reply to Kandace's May 9, 1999 - Hi, I saw an ad on TV that shows some guy who was really sick, all of a sudden start riding a horse. I assume they were talking about Coreg since it is the only "new" medicine really approved for CHF, although it doesn't really get anyone's energy level up. The thing is, they give a Website address on that ad that I don't think exists: http://www.newmedicines.org/. I can't get it on my computer. bdbrinkman@juno.com


Lucy May 10, 1999 - Hi, I have started this so many times. We are going for a thallium stress test tomorrow and again on Tuesday, we do a follow up and a regular stress test. The doctor is trying to avoid another cath; not that we have had a bad experience with caths. Our serious problems began with an angiogram for a fem-pop bypass (an operation to bring more oxygen to the legs). I can remember him saying to me that it makes no sense to him to run a wire into the arteries in his legs to see how much plaque is there and why wouldn't it knock some of it loose? Well, to the best of their knowledge, it did. He got a severe headache. He says he never had headaches and the family doctor agreed. Then he had the operation with a block in his back. He thought he was in heaven the operation went so well. Then a piece of the plaque went into his lungs and next it went into his kidneys. He was on dialysis for a year. I matched for a transplant. When he went into kidney failure, he was in CHF. They mentioned it in passing. After the transplant, no one told us that the failure would follow us.
     Going back, sorry, if I stop now I won't finish. A week after the transplant when we were being discharged, he kept telling me his "shoulders hurt." He wanted me to get him a digitalis (?) Again, to make a long story short, he had a triple bypass. One artery was totally blocked and couldn't be done. Imagine with all the testing for a transplant, they didn't get that his heart was in such bad shape. They said he must have had a heart attack and not known it. The blood vessels had done supplementary growing. There are so many issues I want to address. This guy I married is a trip. If something can go wrong, it probably will.
     The other thing I wanted to address is the cath done at the elbow. They wanted to do a cath. He refused because he felt the last intrusion led to kidney failure. Our nephrologist insisted it be done from another point. I believe it was the elbow but I'm not sure. Anyway, he had no problems. If he has to have a cath done again, we will have it done the same way. Thank you all for being here. What is happening on the 17th? Lucy2u2@webtv.net
 
Jon's Note: Just taking a day off that day. I probably should have done so silently. <g>


Lucy May 11, 1999 - Hi, I am so embarrassed at how jumbled and disjointed my last post was. I was a little upset and there are so many different problems. When they did the test today, he walked on the treadmill for 3 minutes, I guess to get his heart rate up, and then they injected something to help give better images. Then he was sent to the waiting room to sit with me. He almost immediately started complaining of his shoulders hurting and his arms, and a feeling in his legs like they were going to sleep. They gave him a nitro and started an IV, did a EKG, took vital signs and then let things go back to normal. We then went back in and they took images with a machine much like an MRI machine. He's resting now but he doesn't look forward to tomorrow. How many times have we heard of someone taking a stress test, then dropping down? We'll do the best we can with a sense of humor. Lucy2u2@webtv.net


Anna F, May 12, 1999 - Hi, Does anyone know what a normal size left atrium should be? What about hyperlipidemia? I know these seem high tech questions but we got a hold of some charts from my husband's heart doctor and are trying to translate. Any idea were we can go to get some help translating? Thanks for any help. Anna. edward.ferguson@cwix.com
 
Jon's Note: Links


Anita Silvey's May 12 reply to Lucy's May 11, 1999 - Hi, How did your husband's second stress test go? Don't worry about how your posts sound. We don't care. Just say whatever you want and we will understand. My husband has CHF also. I don't post much but I read the posts every day. Take care of yourself and keep us informed. Anita. dreamersil@aol.com


Tandy K, May 12, 1999 - Hello all, Brandt, my 15 month old, with DCM and CHF has been having episodes each day that concern me. His hands and feet get as cold as ice and stay that way for 1-2 hours. When you touch his arms or legs, the color doesn't return for quite some time. He is not indenting like severe edema but is "puffy." We did see the pediatric acrdiologist and he did an EKG and echo. He said everything looked pretty much the same: EF 40, fractional shortening 20. He sent us home with an event moniter with which I have taken several readings and so far nothing. He is a little more fussy recently but is cutting 2 new teeth, so try to figure! I am just wondering if anyone has had anything like this. We go back to the doctor in 2½ weeks unless this gets worse. Thanks for any help in advance and God bless! Tandy K, Mom to 4 boys. kephart@crosswind.net


Amber, May 13, 1999 - Hi everyone, I haven't written for many months. I am writing to anyone who has knowledge about having CHF and a pacemaker. My father Neil, is 65. He has had CHF for at least 4 years. He was told that he has an ejection fraction of 24%. He is a diabetic, takes insulin and takes many medications. His clotting abilty is not very good. He also uses oxygen 24 hours a day. He is able to leave his home and walk around with his tank. Recently, he fainted. A new doctor gave him a 24 hour Holter monitor. The doctor called to say that his heart stopped for 10 seconds, which could have caused the fall and could be fatal. He said he should get a pacemaker. I am grateful for information you gave in the past. He learned about Coreg, which has helped him. He wants to know more about knowledge you may have about people who use pacemakers and whether this operation is done under general anesthesia, possible risks and side effects. Any information will be helpful. Thank you again. AmberHPS@aol.com


Donna Finney, May 13, 1999 - Hi, I'm new, my hub was diagnosed with CHF by his oncologist today and he goes to a cardiologist next week. We don't know anything about this. His oncologist did tell us that his chemo is the reason for CHF. He is in remission from NHL stage 4. He had 8 courses of CHOP and in January, he had a PET scan which said no cancer. What are we suppose to do? He was scheduled to go to work but now what? I am working. The SS office and the government just won't help. We were denied SS and the stress related to fighting for it was really wearing us thin so we didn't pursue it but now I think we made a mistake by not pursuing it. If we apply again, I know we'll have to start all over but what can we do to make this easier on my hub? He lost his job, which means no insurance and that means for the whole family. My job doesn't have insurance. We will have to file bankruptcy soon. This is almost driving me crazy. I'm sorry this is so long. Sincerely, Donna. Gizmoe42@aol.com


Ellen Smith, May 13, 1999 - Hi Jon, I have been reading the posts for quite a while now and I was real excited when I first found you and shared this info with my husband and my family. My husband Wayne, had a heart attack in 3-98 and then another heart attack a few days later after an angiogram. He was on a balloon pump for 5 days, was discharged, had to go back because of a blood clot in his leg, and had a triple bypass in 5-98. He has had CHF ever since. He was in and out of our local hospital from June through July. In August of 1998, I made an appointment with a specialist in Chicago at Rush-Presbyterian-St. Lukes. He ended up in the emergency room there after being discharged from our local hospital and was there for 2½ weeks. His EF is 26 and they said his heart condition is irreversible. He was evaluated for heart transplant but has been doing pretty well on medicine therapy. They have twice tried to start him on Coreg in addition to the numerous other ones he takes but the first time he became overcompensated and had to be hospitalized for 5 days. The second time he was so short of breath that even while sitting and resting, he was short of breath.
     Now we've been told he is at risk of sudden death. They asked if he wanted to participate in a study that Duke University is conducting and he said yes. 1/3 of study participants will get an ICD, 1/3 will start on a new drug, and the remaining 1/3 will continue with the treatment they have been getting. From what I understand, people who have CHF and also are at risk of sudden death don't usually get an ICD. At random, Wayne was chosen to receive the ICD, although he has only experienced slight heart palpitations. He got his ICD implanted on 5-7 and was sent home the same day. There doesn 't seem to be any change in his condition, except he is a might sore. Are we wrong but could we expect to see a decrease in his risk of sudden death syndrome? Thanks and I sure would appreciate any advice. ESmith2673@aol.com


Lucy's May 14 reply to Anita S' May 12, 1999 - Hi, Thanks Anita, The second day stress test went fine. He is very tired though. He wanted to ride the tractor and cut grass yesterday but I talked him into going fishing. I think he had a little more energy last night and now we have a mess of perch to share. We have an appointment with the both the heart and kidney doctors today. Also my aunt Maude (83) was cardioverted on the 7th and the heart doctor said it worked. However, her GP said on the 10th that it hadn't and she is actually worse. She is so hyper. Please put her in your prayers. Lucy2u2@webtv.net


Anna F's May 14 reply to Amber's May 13, 1999 - Hi Amber, My husband has as pacemaker and it is not such a big thing. He got it the same time he had his heart attack and they did it after his bypass surgry. They did it while he was awake, which he said was not too pleasant. The first thing they do is form a pocket under the skin were the pacemaker will sit. Then they run wires/pacemaker leads to the heart. This then helps the electrical system of the heart to keep it beating normally. Edward had several problems with his pacemaker surgury, none of them because of the surgery. His heart is in his chest cavity reversed and the veins leading to the heart are not the same as most people's. This caused some real problems when they went to place the lead wires. In fact, they thought they were going to put it in the right side, formed the pocket and then could not get the wires through. They had to start over on the left. All is well now. The doctors said when he first got the pacer he was only using it about 35%. He now uses it 100% and the electrical system in his heart is gone. Once a month the hospital calls and checks his pacer over the phone. I don't mean to make this sound so easy because without the pacer, my husband would not be here now. I hope and will pray for you and your husband. If you or your husband has any questions that we might answer, please feel free to e-mail us at Edward.ferguson@cwix.com


Karen D's May 14 reply to Ellen S' May 13, 1999 - Hi, Ellen. My husband Bill, has CHF, and after his ICD was implanted in December of 1998, his cardiologist at the Transplant Institute at Tampa General Hospital said she could breath a little easier, since his risk of sudden cardiac death was lessened, giving Bill more time for the various medications to work. So far his hasn't fired. He has intermittent pain from the site but since he is also recovering from rotator cuff surgery on his left shoulder just 2 weeks ago, he doesn't know how much discomfort was due to the shoulder and how much to the ICD. I would say that your husband would fall in the same category as mine does and that his risk of sudden death should be much lower now. I will be interested to hear the outcome of the study that he is in. deitemey@kua.net


Bill D's May 14 reply to Ellen S' May 13, 1999 - Hi Ellen, I tried to reply to your e-mail but the AOL postmaster refused it. If your husband got an ICD, that's great! He's much more unlikely to suffer sudden death. It's like having an Emergency Room right in his chest. If his heart tries to stop, the ICD will go off and "jump start" his heart. Are you sure he got the implant? That's pretty quick to get out of the hospital. Bill D. billdog@gate.net


Jim R, May 15, 1999 - Hi, Has anyone out there suffered from severe, painful itching, almost like bee stings? My father has this off and on. His doctors have been no help at all. I read one post suggesting it might be from dehydration, which I will have him check for. Any other things that anyone else has tried or heard of, for relief would be appreciated. benton383@aol.com


Martha Garcia, May 16, 1999 - Hi, We just learned that our 18 year old son has CHF as well as a pre-heart beat. The doctor has him on Coreg twice a day. He did not want to take the pill during the day because it makes him sleepy. I think today May 15 is the first time he has taken it since we got the prescription about a week ago. I have felt so guilty that I may have contributed to his condition by buying him Metabolife. I didn't know for several months that it affected the heart. He took 8 pills a day for a long time and then decreased to 6 a day. He finally stopped and I also refused to buy it anymore. It was at an Emergency Room for an arm that was out of place where we learned he had a pre-heart beat. He was told to follow up with his primary care physician. He was then sent to a cardiologist. He came back with the news that our son has a weak heart. I was finally able to communicate with his doctor yesterday. He has mild congestive heart failure.
     He was supposed to see another specialist but the appointment came before his referral arrived, so he cancelled the appointment. I suppose the next step is to find out what has caused the CHF in addition to the Metabolife. I think he has had the condition for some time and I just didn't know the symptoms. The problem I have is in getting him to modify his life style. He said he will not cut back on salt. I have not even discussed the liquor angle. He got started on alcohol at an early age. I doubt anyone can give me much help, since I am not the sufferer. If there are any other mothers who have had a similar experience, I would appreciate hearing from them. Thank you, Martha G. Marant1219@aol.com


Amy ?, May 16, 1999 - Hi, I just found this site today and am hoping someone can tell me where to find more information on CHF. My grandfather was diagnosed years ago and very recently has undergone hospice care. He has basically given up, saying he wants to die. He does not eat and has lost so much weight that he looks like nothing but a skeleton. Sometimes, it is even very difficult to understand what he's saying. The words just come out like sounds with no meaning. How long can a person go on like this? He sleeps all the time and his breathing is often erratic. I've been searching the Internet for a site that provides information about the disease but have come up empty handed. Does anyone have any information they can share? amyteach23@aol.com


Jon's May 16 reply to Amy ?'s May 16, 1999 - Have you read my site? See the Site Index for a list of my CHF pages. The info is there. Be sure to ask specific questions here, as you read. We'll help all we can. Jon.


Marion M, May 18, 1999 - Hi everyone, First let me thank everyone for their supportive email. I appreciate each and every one of you so much. Chuck is doing well and we meet tomorrow for more updates with both his hemotologist and the internist. I thought you might like to know we received award letters from Social Security for him and each of our 2 children. We were approved without problem. The application was made in early March, he was examined by a Social Security doctor in early April, and we got the first checks on May 15th. So it can be easy for some. My heart goes out to you who are struggling with the Social Security bureacracy; it can be both intimidating and humiliating. monty@lightspeed.net


Lucy, May 18, 1999 - Hi all, Has anyone any experience with having two cardioversions done? They want to redo Aunt Maude. She says her heart is going like a son of a gun at the thought of it. It's too fast, anyway. Are the odds the same or worse? Lucy2u2@webtv.net


Janie, May 18, 1999 - Dear Jon, I haven't been by in some time but I hope you have some info for me concerning my 76 year old mother. She recently had a hospital stay. She had been taking the wrong dose of Coumadin and began to bleed internally and she was also filled with fluid. She is now home and her blood pressure has been about 100 over 60 (this has been her usual for the past year and a half). Her doctor decided to take her off 5mg Vasotec per day and increase her Lasix to 80mg per day. She keeps complaining about a stomach upset, she can't sleep and isn't regaining her strength. Could she be potassium low? What are the symptoms? She has a nurse visiting and a home health aide but I'm concerned. Any advice you or others might share would be so very helpful. I live over 2 hours away and I'm awake all night thinking about her. Also, she isn't sleeping at night. Is there anything she could take? Right now she is taking a pill called Ambien but it's not working. Thanks so much, Janie. janieg49@yahoo.com


Don W, May 18, 1999 - Hi, My father has been diagnosed with CHF. He is going through depression right now and doesn't have will to keep going. I need to know what to do about his depression. I also need to know if there is a booklet or other information that gives the names and addresses of doctors who specialize in CHF. We live in the Austin, Texas area. All help is appreciated. Thank you. Don W. Wallace_dg@MSN.com


Dina Rice, May 19, 1999 - Hi, We are closer to being approved for Social Security. A lady from the Governor's office called and said our claim was approved here in Arkansas but that it was going on to review in Dallas. She said it was common for cases to be reviewed at the regional level and that ours was chosen. I hope all goes well and it doesn't take too much longer to know. I need one less thing to worry about, if you know what I mean, and I'm sure all of you do! John's been sleeping a lot lately and then doesn't sleep well at night. He just can't get it normal. I could also sleep 24 hours a day if someone would let me. This whole thing has really zapped me too. I'm hoping John feels well enough to go on a small vacation this summer. The bad thing is that I'll have to do all the driving and he will go nuts riding with me! I won't ride with him or let our daughter ride with him with his ICD in. It's gone off twice in a month and that's just too risky for me. When he's feeling good, there's still always the "little" issue of driving. I just hope he understands why I won't chance it. He gets his ego hurt and sometimes even gets mad. By the way, the doc said he had an extra pacemaker in his heart, she thought, after reading his ICD printout. How bad is that? They don't seem to tell you how bad things are and I know they don't want you to lose hope. She just seemed really weird this time and so did her nurse when she initially read the ICD. She wouldn't say anything to us or answer questions without the doctor, and she's usually very talkative and helpful. It's sometimes what they don't say that worries you, isn't it? jmrice@ipa.net


Charlie, May 19, 1999 - Hi, Do any of you live in the St. Louis, Missouri area? We would like to hear from you. Charlie and Marilyn. ccasonsr@aol.com


Laura L, May 19, 1999 - Hello, My name is Laura and my mom has CHF. She is diabetic and has high blood pressure as well. My main question right now is this: She is considering a new procedure or process called chelation. We are reading and hearing conflicting stories about it. Her doctor says it doesn't work but I don't trust her doctor. She's heard from several people who know people who had it done and it worked but she hasn't actually talked to anyone with her particular mix of health problems. The documentation does address each health problem but the documentation seems to contradict each other. For CHF they do one thing, for diabetes they do another and they are exactly opposite of each other. I guess my question is: Have any of you investigated the possibility of chelation to restore blood flow to the legs? If so, how did it work or not work? Thanks. Laura. laura021@aol.com


Pearl, May 19, 1999 - Hi, I have posted once before but only got one reply. Please, if anybody can help me understand the report I acquired from the doctor, I would appreciate it. I have read all of the information that is on this site but cannot find the answers as to what all of this means. My husband has cardiomyopathy, diabetes, CHF, and has had both his aortic and mitral valves replaced with St. Jude valves. His EF is 10-5, or was the last time they did a MUGA. He is in the BEST study for Bucindolol. This is the report as I received it:
     "Seated BP was 138/86, neck vein was distended to 10 centimeters above the right atrium. The heart was enlarged and showed a grade 11/VI holosystolic murmur at the apex, and a grade II/VI systolic murmur at the aortic area. There was an S3 gallop. Electrocardiogram showed artrial fibrillation with an average ventricular rate of 73 beats/minute. The ORS duration was 0.11 seconds. The tracing showed left ventricular hypertrophy, left anterior hemiblock, occasional premature ventricular contractions, and anterolateral ST-T changes. He has developed worsened venous congestion and dyspnea , he shows mild peripheral and pulmonary venous congestion and an increase in blood pressure."
     His meds are Bucindolol study medication, Captopril, Torsemide, Prevacid, Prozac, digoxin, Coumadin, Klor-Con, Magnesium oxide, Ambien, vitamin E, vitamin C, CoQ-10 and spironolactone. If anybody could help me to understand all of this, I would be very grateful. Pearl. pjstrange123@yahoo.com


Jon's May 19 reply to Pearl's May 19, 1999 - Hi Pearl, Honestly, you need to have a sit-down face to face talk with his cardiologist and have him explain it all until you understand it. I can explain most of it, but I am not a doctor. If I made a mistake, you would be led away from a true understanding of your husband's condition. Doctors are able to speak in plain English, when pushed to do so. <G> If you need some specific part of this report explained immediately, e-mail me and I'll do my best but please have that talk with the doc. It's what you pay him for. :-) Jon.


Ellen, May 20, 1999 - Hi, I posted last week about my husband Wayne. He received an ICD on 5-7. He has had no change in his condition yet. I think he is feeling better than usual but he says no. He has had a lot more energy but he says the shortness of breath is still there. He takes 120mg of Lasix twice a day. Twice a week, he also takes 2.5mg of Zaroxolyn. I am surprised at the number of people who are having trouble getting SSD. Wayne applied in late August of 1998 and was approved in November, 1998. We filled out some paperwork and he got a couple of calls and he was approved. He said the person who called him right before he was approved was very sympathephic. So it may be that if you are having trouble, it may be just who you talk to from SS. He was very honest when filling out paperwork and told them just exactly what he was capable of doing around the house which is a little housework, and washing dishes. The most he does is vacuum the living room and polish furniture and he cleans up the kitchen real well. The one thing he can't do is take the wet clothes out of the washer and put in the dryer. He says they are too heavy. He may have gotten SSD so easily because he was a crane operator before any of this happened and now because of him having a risk of sudden death his doctor said he cannot operate any machinery. ESmith@aol.com


Lynn, May 20, 1999 - Hi, My 45 year old sister suffered a massive heart attack 4/8/99 and another heart attack on 4/13/99. She was on a respirator until 5/9/99 because she had so much fluid build up in her heart and lungs. They say she is in need of a transplant but is not a candidate because she is a diabetic and overweight about 50lbs. The tests show her heart is only working at 25-30% and that her heart itself is extremely damaged from diabetes and the heart attacks. She suffered a mild stroke when they did an angioplasty 5/7/99 to try and open the only artery they could. She has had 5 previous angioplasties and one "roto-rooter" over the last 7 years.
     We applied for SSI but still have not heard anything back yet. She is so weak that I am really worried about her. The hospital is releasing her tomorrow and I am so scared that she is not going to make it very long. We do not have any insurance and there is no nursing care being provided unless she gets SSI. I kind of feel as though they are sending her home to die. They have said there is nothing more they can do for her. At first, they were going to send her to a skilled nursing facility but now have changed their mind. We have so many concerns but the hospital and doctors arent listening.
     How long can someone live with only 25-30% of their heart working? What things should we look out for? What should we expect? She gets out of breath so easily and can bearly talk with out having trouble breathing. She can walk only about 2-5 steps and then has trouble breathing. She gets lightheaded a lot. Any advice and info you can give is greatly appreciated and needed, please. topsi@wt.net
 
Jon's Note: Have you read The Manual yet?


Dina R, May 20, 1999 - Hi, It's me again! John's ICD went off 3 times in an hour today and we took him to the emergency room. They didn't read his ICD and they just took his vitals and did an EKG and sent him home. He wasn't going to spend the night even if they wanted him to. That brings our total to 5 times in a month. Do we win a prize or anything? Is this a record? He seems to be feeling ok but every time it goes off, he gets more depressed about what kind of future he can have if it goes off so often. We're wondering when they'll formally mention transplant. I am worried because he's such a big guy. He's not really overweight looking, he's just big - 6'4" and 278lbs. Thanks to everyone who e-mails us. Y'all have been wonderful to me. Lee, I still can't get him to e-mail you back. He may now. Send your e-mail address to us again, if you can. He wrote to Pete at Healthy Heart but I think we lost your address, Lee. jmrice@ipa.net
 
Jon's Note: See Lee's pages at http://www.heart-help.net/. Are you on the mailing list? Recent mailings address ICD shocks & quality of life, and ICDs & driving. If you want them, e-mail me.


Karen D's May 21 reply to Dina R's May 19, 1999 - Hi Dina, I know exactly what you mean about not wanting your husband to drive. Mine also has an ICD and I do the driving when we go places. Of course, after the first time that I drove us to the Tampa Heart Transplant Center 1½ hours from here, then got turned around and ended up going the wrong way on a one way street, Bill said, "I don't have to worry about a heart transplant, you're going to kill me before I get one." I told him it was a test of how strong his heart was and that he had passed! Well, I still do the driving and haven't killed us yet but I do stop and double-check those one-way streets in Tampa now. In fact, I am taking tomorrow off work and we are going over to Cocoa Beach for the weekend. This is the first time we have gone anywhere other than a hospital or doctor visit since last September and I'll do the driving. Bill will hate it but because he also gets very exhausted almost without warning at times, it's really the only safe way to go anywhere.
     He does drive around here a little but his ICD hasn't ever gone off so he's been luckier than your husband. Anyway, I hope you will be able to take a little vacation. I know I am looking forward to this weekend. Good luck with the SSD process. Bill got approved about 4 months after we initially applied and he received his first check in April. We were very pleased with how quickly he was approved, especially since we had read many postings from CHF'ers. deitemey@kua.net


Sally R's May 21 reply to Laura L's May 19, 1999 - Hi Laura, I am responding to your request for information about chelation. My mother had 30 chelation treatments at the age of 81 because the blood flow to her legs was blocked. The treatments were expensive, $100 per treatment, but Mom was so excited about the possibility of restoring blood flow to her legs that all of her children kicked in and paid for the treatments. We were all skeptical of the claims made for these treatments. Mom's cardiologist told her that the treatments would not help her. All I know is that at the beginning of the treatments Mom could barely walk and she had no palpable pulse in her feet. It took a long time but after about 3 months, we all noticed an improvment in Mom's mobility and when she went for her next visit with the cardiologist, he was able to get a pulse in her feet. A true breakthrough? A placebo effect? I don't know. I do know however, that the quality of my mom's life was enhanced and now at age 86 and in the final stages of CHF, I think the treatments bought her some time. Sally R. therays@gte.net


Bea, May 22, 1999 - Hi, My boyfriend was diagnosed with CHF 8 months ago. He has been in and out of the hospital several times. This relationship is new (2 months old) and I don't know how to respond to his moodiness. He just got out of the hospital a week ago and since then, he has been pulling away from me in every way possible. Can someone help me deal with his rejecting me. He won't talk to me. I've told him that I accept him just the way he is and care for him deeply. What can I do? bumblebno1@aol.com


Anna F's May 22 reply to Dina R's May 21, 1999 - Hi Dina, Edward and I are thinking about you. Anymore word on your SSD? Based on our experience, you sound like you are not far from approval. We got Edward's first payment in April and it has taken a world of pressure off us. Edward's depression has lifted and he is getting up and out. He does overdo it sometimes, though. Well, God bless and e-mail me with more. Anna. edwarsferguson@cwix.com


Andrew, May 22, 1999 - Hi, I'd just like to know if EF percentage means the blood output percentage of the left ventricle of the heart rather than any of the other chambers. andrewaston@yahoo.com
 
Jon's Note: Yes. It is properly called left ventricular ejection fraction.


Virginia R's May 23 reply to Don's May 18, 1999 - Hi, I sent you an e-mail but I'm not certain it went through. Seton has a Cardiovascular Institute in Austin, Texas that specializes in CHF. Their nurses train with Dr. Yancy's office in Dallas, Texas. From what I understand, he is a leading physician in the area of CHF. Their office is state of the art and I happened to overhear this nurse in training explaining that they are purchasing the same equipment. I found this clinic by doing an Internet search on Find a Dr, Congestive Heart Failure. Call the clinic and explain the depression. When we changed to a CHF clinic, my father was given hope just because they were so knowledgeable and caring. I wish you the very best. Keep in touch.
     By the way, Dina and Lucy, I will continue to pray for you both as well as others here. Dad's heart catheterization is Wednesday morning. He will be hospitalized at St. Paul's in Dallas. He was hospitalized just last week for a horrible virus. However, blessings sometimes accompany the dark moments. The attending physician noted that he had been taken off Reglan or Propulsid for his gastroparesis and restarted it. His blood sugar levels have returned to normal. Eight months of 385+ blood sugar levels and mega-dosages of insulin and we find out that he needed this medicine. Did I mention that we will probably change endocrinologists too? All this will be done around Wednesday. Thank you for your prayers and thank you for your support. giniroberts@hotmail.com


Donna F, May 23, 1999 - Hi, I've only posted once before but I thought I'd give ya'll an update on my hub. His name is Dave. He went to see the cardiologist on Friday. He said his EF is 20-25%. He cannot work (he was a welder by trade). The cardiologist seemed very vague with what he could or could not do. He told us to talk to his oncologist. He goes to 3 docs for now and one more soon. None of them want to commit to him going on SSD. He lost his job and we don't have insurance or government help of any kind. We are in a spot. Should we put our foot down and give them an ultimatium, whatever good that will do? We cannot pay the doctors at this time (they know it) and it would be beneficial to them if he were put on Disability. We're going to file for SSD anyway (again). Hopefully it will be easier this time. Any help or comments would be greatly appreciated. Sincerely, Donna. Gizmoe42@aol.com


Cloyd, May 24, 1999 - Hi, I'm new to Webtv and I'm glad to find helpful groups like this one. I've entered Jon's Chat Room on numerous occassions and found the level of sincerity among the participant's to be refreshing. I do not have a heart ailmemt but do have all of the conditions that contribute to one. I'm a 50 year old male, everyone on my father's side of the family has expired from heart disease. I have 2 siblings (males) and both are living with heart ailments. One has undergone a quadruple bypass 3 years ago and still suffers from the operation and the condition. Is this normal? The other brother will under go a Cat Scan tomorrow. I would appreciate anyone having knowledge of Cat Scans replying to this. His doctor would not discuss the procedure in detail, only to say qualified professionals will perform the Scan. The doctor also told him that there aren't any options to the Cat-Scan due his heart being so large. Is this true? Is this procedure dangerous? Cloyd. P-C-Perry@webtv.net


Jon2, May 26, 1999 - Hello people, There was a news report I saw yesterday that stated a recent study found no difference in performance between metoprolol and Coreg in effectiveness in treating CHF except that metoprolol is a lot cheaper. Anyone out there hear of this? My Mom's cardiologist is going to start her on Coreg soon. It makes no difference as her insurance pays either way but for others it might. Since she has been on Aldactone (2 weeks ) she has improved dramatically. Her anemia has gone and her oxygen consumption cut in half (4 litres per hour to 2). She now has a little bit of energy to get out of the house and do things again although her short term memory is still the pits. Anyway, I just thought I would let you know about the news report. So long for now! jonjensen@uniserve.com


Jon's May 26 reply to Jon2's May 26, 1999 - Hi Jon2, I have the abstract from the Circulation medical journal on my Coreg page. The study was very small, did not measure all factors, and ignores certain basic differences in drug action between the 2 drugs. It certainly raises the need for a better trial, though! I'm looking for a large, more detailed trial to start very soon. Should be interesting. Jon.


Virginia R, May 30, 1999 - Hi Jon and everyone else, Thank you for all of the prayers and support. We are at Dad's home tonight! His right-side heart cath went very well. The physician stated that the pressures in his heart were normal or near normal. The doctor said he was surprised but this, of course, is great news for Dad! He is still in heart failure however the trend is positive. To this, we state, To God be the glory. God has answered our prayers. Just a few weeks ago, we were told that we did not have time to waste. This doctor began titrating his Prinivil in the office with the aid of state of the art equipment a few weeks ago. Today they increased his Coreg dose to 6.5mg two times a day. This was also done while he was hooked up to all the fancy machinery. giniroberts@hotmail.com


Virginia R, May 30, 1999 - Hi Jon, you mentioned asking about how many heart caths are done at hospitals. Well, I never asked but 4 were done just during the hour we were there. Dad said they put him on the table and prepared everything. The doctor asked Dad a few times how he was feeling and stated that he was going to start the procedure. They deadened the area on his neck and that was the last thing he felt. The procedure was over before he knew it. He was up and walking around 40 minutes after the procedure started. The good news is that my Dad's pressures were all normal and he did not need further hospitalization. An answer to prayer!
     Regarding that report on Coreg, our doctor's office stated that his doctor had been studying Coreg for the past 6 years and they were highly sceptical of that report! This doctor is the head of the Heart Transplant Unit at St. Paul's Baylor Medical Hospital in Dallas. He is also the head teacher at University of Texas/Southwestern Medical School. They have done over 200 heart transplants. Again, thank you all for your support and prayers. giniroberts@hotmail.com


Liz C, May 30, 1999 - Hi, I posted about a month ago about my Mom, age 85, who has CHF. I took her to the doctor on Tuesday for a regular visit and he ordered oxygen at home for when she needs it. I could understand that but what really threw me a curve was that he called me aside and said he thought it was time for hospice. I was stunned. Mom has a living will but I don't think she is ready at this point. The doctor said, "Hospice is for 6 months but I don't think it will be that long." I need some guidance here on what kind of questions to ask. I did speak witih the hospice people and a nurse is supposed to call me back. I have said nothing to my Mom because, first of all, she knows what hospice means and secondly, she is still active in the sense she gets up every day, gets showered and dressed by herself, puts on makeup, makes the bed, etc. In other words, she is not incapacitated. I am afraid if hospice came in now, it would take way her spirit. By the way, the same doctor told my Mom at one point that he didn't think my Dad would make it until Christmas, which was 3 months away, and he lived another 2½ years with CHF. So maybe he doesn't know everything. I am trying to be realistic but I will not lose hope. I surely would appreciate any suggestions. I am so confused. Please keep my Mom in your prayers. Thanks. Ecolaneri@aol.com


Bette, May 30, 1999 - Hi, I have posted before about my dad who is 86 and in the final(?) stages of CHF. He is in a nursing home and we have a note in the file and an agreement that he does not want to return to the hospital should he have another heart failure. The last time he became very uncomfortable and couldn't breathe. What will the nurses be able to do that will make him comfortable when this happens - oxygen, muscle relaxer, morphine? Is there a standard procedure or drug that they use to help with the pain? I just don't want him to struggle for hours or days before he expires. Last time he didn't want to go to the hospital but became so uncomfortable and scared that he ended up requesting an ambulance when he couldn't breathe. Does anyone have any suggestions? wsh3rd@aol.com


Jon's May 30 reply to Bette's May 30, 1999 - Hi Bette, First, get the attending doctor, whoever he is, to sit down and have a face-to-face talk with your dad about his wishes. This is the primary need in this situation. Ask both parties if you may attend, and be sure they know this is very important to you as an adult child of the patient. Morphine is a perfectly acceptable drug for end-stage CHF. It is a venodilator, so it reduces the heart's work load. It also eases anxiety. These two actions offset a tendency to depress breathing. Inotropic drugs are also appropriate. They are given intravenously and increase the strength with which the heart contracts. They do have side effects: they can cause arrhythmia and may shorten life, but they are great for symptom relief and that is your primary concern at this point. These drugs include Milrinone, Amrinone, dobutamine, dopamine and the not yet approved Natrecor. Be sure to bring all these options up to your dad so he knows what is available to him. Best of luck, and let us know if we can help with more information. Jon.


Carolyn B, May 30, 1999 - Greetings, An update on my younger daughter, who is 13 with DCM. She had another echocardiogram, which showed just a slight 2% downward change in the Fractional shortening (not to be confused with ejection fraction) from the one a month ago, when she spent the night in the hospital with pneumonia and strep. The doc increased her Lisinopril and is keeping her on a very small dose of Lasix. She still has a chronic cough that started this fall. She has been on Lisinopril for almost 4 years. Has anyone developed a cough from Lisinopril after being on it so long? She is very active and has pretty good endurance. littleone@integrityonline.com


LeaAnna's May 30 reply to Scott C's May 4, 1999 - Hi, I can understand your fear and frustration. My mother also has CHF and lately has really been battling. It sounds like your Mom has a great attitude and isn't ready to give up. I don't know how much it helps but I believe that it must along with support from your family. My mom seems to be having a problem with keeping fluid off her lungs. This causes her to lose her appetite and her energy, so she doesn't want to get up, so she doesn't get the fluid off. My folks live in Texas and I'm in Minnesota, so my Father lovingly tends to her needs. He calls it a labor of love. I agree with you that it is too soon to lose your Mom. Mine is 67. Hang in there and learn as much as you can about CHF and love her as much as you can. Prayer really helps. Lea Anna. LeaandPete@aol.com


Amber, May 30, 1999 - Hello, Thank you Anna F and everyone who wrote. My father had his pacemaker procedure done a few days ago and is now home. He has a dual chamber pacemaker that is located under his clavical. I am grateful for the information you gave me, which was useful to me and my father, Neil. He told me that he was in some pain during the procedure and he is happy to be home. He said he doesn't just know what to expect now. He has a rate responsive pace maker. I spoke to the doctor, who told me about it. My father can't move his left arm until he heals. Some time ago, Neil's doctor's told him that he was too weak for surgery. Since he began learning about new medications, including through this Website, his heart has grown stronger. Thank you. If anyone can tell me what experiences he may have after surgery and in the coming months with a rate responsive pacemaker, I would be glad to know. AmberHPS@AOL.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.

Talk to Jon Site Index