The paperwork never ends The Archives
December 1-15, 2002 Archive Index CHFpatients.com

Jon 12-2     vampires and lateness
 
Dorothy Powell's 12-2 reply to Doreen's 11-30     my familial CM experience
 
Clara D's 12-2 reply to Dorothy Powell's 11-30     questions, similarities
 
Hal 12-2     seek pen pals in British Columbia
 
Tracey C 12-2     am I being too hard on my mom?
 
Jon's 12-2 reply to Tracey C's 12-2     I hope some caregivers respond
 
Amelia 12-2     whatever makes us feel better!
 
Amelia's 12-2 reply to Tracey C's 12-2     caregiving difficulties
 
Shery C's 12-2 reply to Tracey C's 12-2     and to Amelia
 
Natalie K's 12-2 reply to Jon's 11-30     donations via partnerships
 
Pat Y 12-2     lucky so far & more
 
Tracey C 12-3     does anyone else get these symptoms?
 
Jon's 12-3 reply to Tracey C's 12-3     I hope others reply
 
Catherine L's 12-4 reply to Doreen's 11-30     people with family history of CM and CHF
 
Joanna D 12-4     prayer request, need help with terms & more
 
Norma's 12-4 reply to Tracey C's 12-3     racing heart episodes experience
 
Catherine L 12-4     donate estate where?
 
Amelia's 12-4 reply to Tracey C's 12-3     what to do during such episodes
 
Dave 12-4     doctors, ICDs, finding information & more
 
Bernard Z's 12-4 reply to Tracey C's 12-3     muscle contractions, cramps & more
 
Roz' 12-4 reply to Tracey C's 12-2     coping with and caring for moms
 
Sue's 12-4 reply to Tracey C's 12-3     experience with similar episodes
 
Kelly S' 12-4 reply to Amelia's 12-2     saw the movie, update, best wishes
 
Kelly S' 12-4 reply to Tracey C's 12-2     coping with and caring for CHFers
 
Scott Brown's 12-4 reply to Tracey C's 12-3     experience with similar episodes
 
Donna 12-5     drinking lots of water question
 
Jon's 12-5 reply to Donna's 12-5     more questions <g>
 
Myrtle C 12-5     seek Xenical experiences
 
Myrtle C's 12-5 reply to Joanna D's 12-4     life is not over
 
Misty 12-5     seek heart transplant experiences
 
Ben B 12-5     daunting trying to find work after disability
 
Glenda 12-5     intro, getting on with life
 
Jon 12-5     please rush those replies
 
Cat 12-5     saline laxatives for procedure sound risky
 
Jon's 12-5 reply to Cat's 12-5     saline laxatives are a bad idea
 
Sheryl's 12-5 reply to Roz' 12-4     caregiving is complicated
 
Michael S' 12-5 reply to Dave's 12-4     possibilities
 
Krista's 12-5 reply to Dave's 12-4     ICD experience
 
Marly's 12-5 reply to Donna's 12-5     fluid retention and Coreg - anyone else?
 
Lori K 12-5     seek atrial septal defect info, experiences
 
John S' 12-5 reply to Ben B's 12-5     echo measurements of EF
 
Jon's 12-5 reply to John S' 12-5     echo measurements of EF
 
Dave's 12-5 reply to Michael S' 12-5     and to Krista
 
Catherine L 12-6     low BP, frustration & fear, and more
 
Jon's 12-6 reply to Catherine L's 12-6     low BP, frustration & fear, and more
 
Joe S' 12-6 reply to Bernard Z's 12-5     muscle cramps & more - any ideas?
 
Scott Brown 12-6     meds and side effects
 
Donald Grande 12-6     seek ACE inhibitor experiences
 
Michael F 12-6     seek suggestions about this plan
 
Natalie K's 12-6 reply to Catherine L's 12-6     a wonderful post
 
Amelia's 12-6 repy to Lori K's 12-5     similar experience
 
Amelia's 12-6 repy to Lori K's 12-5     my experience
 
Myrtle's 12-6 reply to Joe S' 12-6     my experience
 
Phill's 12-7 reply to Marly's 12-5     my Coreg experience - good and bad
 
Sheryl C's 12-7 reply to Michael F's 12-6     my Coreg experience
 
Tom S' 12-7 reply to Michael F's 12-6     being maintained properly on meds
 
Jon's 12-7 reply to Michael F's 12-6     lackadaisical doctors
 
Gino's 12-7 reply to Catherine L's 12-6     unusual, some things to consider
 
Joe S' 12-7 reply to Myrtle's 12-6     it was a bug bite
 
Tom S' 12-7 reply to Jon's 12-7     I'll ask at next visit
 
Jon's 12-7 reply to Tom S' 12-7     spironolactone
 
Craig B's 12-7 reply to Michael F's 12-6     my Coreg experience
 
Raija's 12-7 reply to Lori K's 12-5     my CHF experience
 
Tom S' 12-9 reply to Jon's 12-7     Aldactone info
 
Joe Enders 12-9     weight swings, drug doses
 
Jon's 12-9 reply to Joe Enders' 12-9     weight swings, drug doses
 
Misty 12-9     what was that about spironolactone?
 
Jon's 12-9 reply to Misty's 12-9     Aldactone (spironolactone)
 
Joseph P 12-9     why did doc say to eat more salt?
 
Joe S 12-9     seek ideas or suggestions
 
Mike 12-9     is memory loss part of CHF or CHF meds?
 
Catherine L 12-9     it's been an unpleasant experience
 
Jon's 12-9 reply to Catherine L's 12-9     some tips
 
Tom S' 12-9 reply to Joseph P's 12-9     that's a new one
 
Shirley V 12-9     seek gallbladder removal experiences
 
Jon 12-9     mailings
 
Jon 12-10     Medicare now covers TMLR for some angina
 
Barbara Hunter 12-10     does anyone burp a lot?
 
John's 12-10 reply to Tom S' 12-9     liked article, Aldactone question & more
 
Jon's 12-10 reply to John's 12-10     why ask why?
 
Emil's 12-10 reply to Mike's 12-9     memory loss, mental fogginess
 
Chuck H's 12-10 reply to Catherine's 12-9     colonoscopy solutions without sodium overload
 
John Rice 12-10     update, best wishes
 
Misty's 12-10 reply to Jon's 12-9     seek transplant experiences
 
Janet TB 12-10     heart recovery question
 
Chuck H's 12-11 reply to Jon's 12-10     here's a web page about it
 
Jacky 12-11     yawning while exercising
 
Herbert L's 12-11 reply to Barbara's 12-10     belching and yawning experience
 
Ingrid's 12-11 reply to Barbara's 12-10     belching experience
 
Margaret D's 12-11 reply to Jacky's 12-11     yawning experience
 
Chuck H 12-11     corrected url for SoLo Prep
 
Suzy Coulter's 12-11 reply to Catherine L's 12-9     hang in there, update
 
Jan's 12-11 reply to Barbara's 12-10     belching experience
 
Bob 12-12     numbness & tingling left arm - anyone?
 
John Rice 12-12     heavy-duty Coreg may have saved me
 
Joyce 12-12     intro, why does he sleep all the time?
 
Tom S' 12-12 reply to Jan's 12-11     gas escape
 
Joyce 12-12     does Johns Hopkins have CHF doctors?
 
Lorraine's 12-12 repy to Joyce's 12-12     sleeping a lot
 
Tom S' 12-12 reply to Bob's 12-12     tingling, numbness, pain experiences
 
David's 12-12- reply to Joyce's 12-12     John Hopkins cardiomyopathy clinic
 
Carol W 12-12     quick loss from diuretics can be a problem sometimes
 
Linda Oline's 12-12 reply to Shirley V's 12-9     gallbladder surgery experience
 
Natalie K's 12-12 reply to Joyce's 12-12     CHF docs
 
Jon's 12-12 reply to Natalie K's 12-12     CHF docs
 
Amelia's 12-13 reply to Joyce's 12-12     Johns Hopkins & more
 
Jack D's 12-13 reply to Carol W's 12-12     associating illness with procedure
 
Ike 12-14     having trouble sleeping - anyone else?
 
Vicki 12-14     why should I eat more salt?
 
Jon's 12-14 reply to Vicki's 12-14     more salt?
 
Ruthie A 12-14     surgery concerns and experience
 
Joyce's 12-14 reply to Amelia's 12-13     thanks, seeing specialist at Johns Hopkins
 
Kathy 12-14     getting Disability is not always a struggle
 
Clara D 12-14     seek multifocal atrial arrhythmia experiences
 


Jon, December 2, 2002 - Hi everyone, I am having some problems and have to go get a couple of gallons of blood drawn this afternoon <g> so posts and e-mail replies will be late. I am sorry - about being late and I'm sorry for myself that I'm sick! <lol> At least, I know the phlebotomist and she's perfect - no pain, no winces, no bruises. :-) Jon.


Dorothy Powell's December 2 reply to Doreen's November 30, 2002 - Hi Doreen, I have a family history of dilated cardiomyopathy. My older brother came very close a number of times to having a transplant. I was diagnosed in 2000, and now have an ICD, and so does my brother. Now this is where it becomes complicated because they believe my son died of HCM, my mother died of a heart attack, my aunt has been diagnosed with HCM , my mother died at 45 years of age from a heart attack, her father at 32 years, my cousin at 6 years, so who knows?
     I had no idea either. I went to give blood and because I had been on meds for VT diagnosed in 1987 I had to have permission from the cardiologist and then I found out. I can understand about the fatigue but sometimes I'm not sure whether it's the meds or the DCM. Anyway, life goes on and I do the best I can. You get some very good and wise advice on this forum. One was to listen to your body and if you need to rest, then rest. Take care, Vicki. art_vic_payne@yahoo.com.au


Clara D's November 30 reply to Dorothy Powell's November 30, 2002 - Hi Dorothy, I'm wondering why you were originally diagnosed with asthma since you state that you experience no shortness of breath after 45 minutes of exercise? Like you, I have no CHF symptoms except the need to take afternoon naps. I do find that the more exercise or work I do, the more I need to nap. I've never experienced shortness of breath or swelling of ankles even though I've had an ejection fraction of less than 15% for over a year now. Could the fact that we have both exercised all our lives get the credit? Something is making a difference in keeping us compensated. The only time I have felt really bad were the first 2 months after I was diagnosed when I wasn't allowed to exercise. Of course, that's also when I had all the side effects from the ACE inhibotor.
     What meds are you taking and do you think they are helping? I was unable to take an ACE inhibitor and also couldn't tolerate the first ARB I tried, but have been on Diovan now for over 2 months without any side effects. So far haven't needed anything for fluid retention but always gain 2 or 3 pounds overnight if I'm not very careful about sodium intake. I hope you continue to do well. Please keep us posted. ncdossetts@aol.com


Hal, December 2, 2002 - Hey Everyone, Awhile back I asked for information regarding health care in other countries and met some nice folks and learned a thing or two. Now I would very much to correspond with all you fine people from British Columbia. I'm stuck in California and it's no place to be poor and sick too. Rent starts at a thousand a month and the welfare system, God bless them, dwindles by the hour. I've heard that in Canada one's health isn't just another commodity to be bought and sold like chewing gum. Apparently this is a basic right of Canadians, all of them. Pretty radical, huh? uncahal@webtv.net


Tracey C, December 2, 2002 - Hi everyone, Jon, I'm sorry you're not feeling good. I hope all is well soon. I hope everyone had a good Thanksgiving. I haven't felt good for the last couple days after months of feeling great. I take 10 mile bike rides and walk 2 1/2 miles about 4 days a week, most often with no problems. My last MUGA in May showed my EF to be 48%, down from 55% where it was for about 2 years. I was good at Thanksgiving. I went out with the family to a buffet, but had literally a teaspoon of stuffing and mashed potatoes and very little turkey as it tasted pretty salty.
     However, the next morning I was up 3 pounds. I've lost most of it since. My mom also has CHF and we're about the same, function-wise. However, she's a little less careful with what she eats and I always intervene when I see her doing it. This time she put about 3 pats of butter on a roll and I took it from her and broke off just a piece for her to eat. My grandma saw this and gave her a brand new buttered roll saying I should just "let her eat in peace." That's my grandma though. She usually lives in denial about all this.
     Was I being too hard or would any of you have done the same? Granted, she's lived with this for 10 years and I've only had it 2 1/2 so she has a bit more experience with it. Oh well, any opinions would be welcome. Take care. 2tcollins@cox.net


Jon's December 2 reply to Tracey C's December 2, 2002 - Hi Tracey, I hope some caregivers respond to this. From my perspective, grandma's reaction is unimportant, although grandma certainly isn't! <g> The question is, how did your mom take it? If she can live with it, whether she likes it or not, it's okay in my view. However, she'll do as she pleases when your back is turned. Still, it does show you care and want her to be around for quite awhile yet. Just be sure your mom takes it okay, I'd say. Jon.


Amelia, December 2, 2002 - Hi, Whoever watched the tear jerker on TV last night, "The Christmas Shoes," well, that would make anyone of us real sick, since the mother had CHF and died. That would not help new CHF people, too bad they didn't elaborate more. Well anyway, she loved dancing and that is what I miss the most in the story. Her little boy saved money to buy her special shoes that she always wore to dance and made her happy, so I am going out to buy myself some special dancing shoes. At least my feet can tap and wiggle. Hey folks, anything that can give us happiness, funny or otherwise, best to all and to you, Jon. Amelia. amelias@erols.com


Amelia's December 2 reply to Tracey C's December 2, 2002 - Hi Tracey, I understand very well your concern over your mom's health. I am caregiver for my diabetic 90 year old mother. When my mom was younger she understood what I was helping her with and how important her eating properly to stay in good health was. Now it's "I will eat anything I want, the doctors don't know everything, I am still alive." Poor dear, what she doesn't understand is her quality of life would be better if she took better care.
     Helping your mother with what she eats or does depends as Jon says, on how she responds. Her age and attitude have a lot to do in helping her. Try to explain to her that by watching what she eats now, she will feel better and have a better quality of life, etc. If she accepts this, then you have to "work" on grandma. Explain to her the same thing about quality of life and educate her if she is able to comprehend, on your mom's condition. Good luck and best to you all, Amelia. amelias@erols.com


Shery's December 2 reply to Tracey C's December 2, 2002 - Hi Amelia, I miss dancing a lot also. Sometimes now, I wake up from a dream of dancing and I smile and think, "I was dancing!" Same for running. I love those dreams.
     Tracey, today I gave a lecture to a diabetic person about his diet choices. He is committing slow suicide. So are people who ignore the low-sodium diet on which CHFers should be. I use strong terms in dealing with denial because denial can have some strong consequences. Have your mom read through Jon's site. Good luck, Sheryl C. cvprehab@hotmail.com


Natalie K's December 2 reply to Jon's November 30, 2002 - Hi, I hope this post finds you over your troubles and raring to go. I hate to belabor the point and I understand about donating. What's happening at Free2Give, however, is that when I'm shopping at Amazon, which I do all the time anyway, 2.5% of my spending is going to the Cardiomyopathy Association in the UK. I just thought a deal like that would be a nice way for your site to get money that you would not otherwise get. ;-) mcnat45@yahoo.com
 
Jon's note: Sorry, I misunderstood


Pat Y, December 2, 2002 - Hi, Recently I realized how lucky I am. On 12/25/94 I suddenly became extremely short of breath and barely made it to the hospital. I have IDCM and was in severe CHF. No symptoms prior to that date. Since that time I have never checked into Club Med and have only made 2 trips to the ER. I sometimes wonder why I see a cardiologist twice a year since I seem to be stable. My only complaint is the exhaustion that just never goes away so I am limited on how active I can be. I do take my medication regularly.
     With a compromise between the cardiologist and myself, I do not take quite the full amount of medication since it increases my exhaustion and messes up my thinking. So I go for quality of life rather than longevity. I don't watch my diet very well. If I gain weight, I just limit my sodium intake for a day or so. I am indeed lucky and I am so thankful.
     To those recently diagnosed, there are some of us that have been around for some time. It will be 8 years for me on Christmas Day. PTYoumans@aol.com


Tracey C, December 3, 2002 - Hi everyone, Thanks for the input regarding my mom. I'll speak with her and try to tell her how important all of this is.
     On a second note, after my post yesterday of not feeling well, last night I became very sick, very fast. I know that the typical CHF episode is shortness of breath, etc., but when I get what I consider my CHF episode my blood pressure goes way up, my heart beats hard and fast, and my muscles contract uncontrollably. Have any of you experienced this without being short of breath?
     I've had this happen 3 times in 2 years and while I realize I always come out of it okay, I'm still very scared. I'll try to get in to my doctor today since I'm still very weak and sick to my stomach. Thanks, Tracey. 2tcollins@cox.net


Jon's December 3 reply to Tracey C's December 3, 2002 - Hi Tracey, I hope others reply if they have experienced this. I don't know. However, this may not be heart failure-related, not directly. It could be a vagal response, an arrhythmia, an electrolyte imbalance, or something else entirely. I would very strongly push my doctor to get to the bottom of this, really. Better safe than sorry. Jon.


Catherine L's December 4 reply to Doreen's November 30, 2002 - Hi Doreen, A woman in my CHF support group comes from a family with CHF history. Her grandchild just got a defibrillator. If you want, next time I see her I will ask her to contact you. She is also a hospital chaplain. She's a very nice person. She has a pacemaker and a defibrillator and an EF in the 20s, I believe. Take care and good luck, Catherine. ccash@kcnet.com


Joanna D, December 4, 2002 - Hi, I have been reading your comments for awhile now and I need to get this off my chest. Today I got up the nerve and called the SSA office. I had a massive MI in 1997, CHF, thyroid cancer with 2 surgeries this year, RAI, paroidectomy, and have had breast biopsies from 3 areas. I am scheduled for Friday about depression and anxiety.
     When I orginally had my heart attack, my cardologist said to never stop working, so despite all the absentees when I just cannot get out of bed, numerous times in the hospital for angina, leaving work early or in the ambulance, I tried to stay working but I cannot do it anymore. Please pray for me. Thank you.
     I was also hospitalized 11/26 to 11/29 last month for chest pain. I had an echo, stress test and cath. The cath report said my EF is 36% with distal anterior, distal septal, and apical scar with anterior and apical peri-infarction ischemia on dobutamine; if anyone can tell me what that means!, and previous anteroapical infarct with reduced ejection fraction of 30 to 35%, gastroesophageal reflux disorder, hypertension and dyslipidemia. rhobbs3@yahoo.com


Norma's December 4 reply to Tracey C's December 3, 2002 - Hi Tracey, Before I was diagnosed with CHF, the episodes you mentioned happened to me. One minute I was watching TV, the next my heart was hammering furiously and I felt faint. Luckily I was already in bed so I didn't fall over. I called my sister and was rushed to the hospital where they monitored me but as my heart got back to normal, doctors sent me home. It happened again frequently after that and I was sick and ill for about 6 months. The doctors told me it was a reaction to some medication.
     One and a half years later, I was diagnosed with CHF and DCM and had not had no more episodes until last May. This was the first one in 5 years. Suddenly, it felt as if some electrical switch has been turned on and my heart started beating not only very fast, but very hard. Paramedics were called and put me on a monitor and could find no evidence of a heart attack. They stayed with me for an hour, as my heartbeats gradually returned to normal, but my muscles still felt jumpy as if I was in shock. They put the cause down to MSG in some gravy I had eaten that day!
     What it is really is a severe adrenaline rush, but what causes it is a mystery. The next day I was weak, but after that came back to what is normal for me. I agree with you that it is extremely frightening, even though you realise it will subside eventually, but I wonder if it does further damage to the heart muscle? I have seen doctors and cardiologists and none of them can explain it, but all say not to worry about it! That's not an easy thing to do. I did try taking a breath and holding it for a count of 6 since I heard this is supposed to help. Good luck. Try not to worry, I believe stress helps bring it on. Norma. normadroz@aol.com


Catherine L, December 4, 2002 - Hi, My husband and I have decided that when we die, which we hope is many years from now, we want our estate to go to research on curing CHF. We have no children. Perhaps some good can come out of my having this terrible condition. If so, it would give me comfort and lend meaning to my life. Does anyone have a recommendation as to whom we should give our estate? I had thought that the Heart Failure Society of America founded by Marc Silver was a good place but any other suggestions are welcome. Thanks, Catherine. ccash@kcnet.com


Amelia's December 4 reply to Tracey C's December 3, 2002 - Hi Tracey, I am so sorry you have had an episode to make you feel so bad. For what it's worth, my doctor told me whenever I feel bad within my chest, with fast heart rate, irregular beats, dizzy or whatever, I am to call 911 and get to a hospital. I told him when these things happen it doesn't last very long and by the time the paramedics get to me I am sure all will be fine. He said it doesn't matter, just get to a hospital. Sooooooo kiddo, you should not take any chances and get to the doc's office or hospital when something weird is going on. Even though as Jon said, it may not be heart failure, why play guessing games and worry? Best to all, Amelia. amelias@erols.com


Dave, December 4, 2002 - Hello everyone, I was diagnosed right around this time in 1999 with IDCM. I didn't know anything was wrong, just thought I was getting old at 39. I thought the meds were making me tired but it has got slowly more so. I now take Monopril, Norvasc, Aldactone (spironolactone), furosemide, metoprolol, Zocor, niacin, and aspirin. I also have LBBB and palpitations, especially after eating and when I go to sleep or lie down.
     I spent a lot of time trying to find out as much as possible so I could know what to ask the docs and what they were looking for. I have not gotten a lot of info from my docs though. I found out most on my own. Why? I've read only a portion of the posts and already see the same things that I've experienced.
     I've been wondering if I need an ICD. I was told one is probably a good idea, but the doctor has to approve it. However, without a documented episode or SCD he probably won't. I have not found a site that has so many with DCM as this one. I am gonna read more. Thanks Jon for this place! divad01@earthlink.net


Bernard Z's December 4 reply to Tracey C's December 3, 2002 - Hi, Medications have my blood pressure and heart rate under control but muscle contractions (cramps?) still happen. I suspect it is an electrolyte imbalance in my case. The good Lord and fine doctors have me still going six and a half years after CHF. You and this site Jon, have helped me cope better ever since I found it. God speed! Bernard Z. bernardz@cox-internet.com


Roz' December 4 reply to Tracey C's December 2, 2002 - Dear Tracy, Your question about the care and feeding of mothers was one I felt I had to respond to. As one tends to remember parents one has never stopped missing, I was thinking about how in the spirit of love I would gently chide my mother when she would act contrary to the cardiologist's advice and how dearly I now wished I had not done so. The few years I was her caregiver might have been shortened a bit, but I think they would have been happier for both of us. Now that I am the one with all the restrictions, I feel lucky to be free of supervision! Lots of love and offers of help but no nagging, just a thought. My best wishes to you and your family. You have your hands full and I admire your spirit. Roz. RWarriston@aol.com


Sue's December 4 reply to Tracey C's December 3, 2002 - Hi, For what it's worth, I had a similar experience once. My heart rate was too fast to count and was beating very hard. After about 20 minutes into this I started getting a little lightheaded, short of breath, and diaphoretic (sweaty). I drank some ice cold water and it stopped as suddenly as it started, probably from the vagal stimulation. My cardiologist figured it was sustained VT and I wore an event monitor for a month. Of course I only had frequent non-sustained VT then. It's never happened since but I'm taking Coreg, which helps a lot. I think you definitely should tell your doctor about this, fast. It could be a number of things, including electrolyte imbalance. Good luck, Sue. suekgpc@hotmail.com


Kelly S' December 4 reply to Amelia's December 2, 2002 - Hi, I watched this movie too and it was definately a tear jerker. I may have to get the book, I'm sure it would also be good. I hope everyone had a wonderful Thanksgiving. Larry has been having good days, despite the dismally cold weather here. He's been instructed to walk as much as possible, so we usually head to a huge store and walk until he's walked out. larkel@locl.net


Kelly S' December 4 reply to Tracey C's December 2, 2002 - Hi, I believe only the person living with the disease knows how they feel. My husband knows if he eats the wrong foods or too much, then he'll feel miserable in the end. I've made suggestions in the past, but ultimately in the end it's his decision. I think both you and your grandmother were only looking out for the best interests of your mom, but maybe she's also feeling a bit overwhelmed by both your reactions. I am not trying to be critical, just some insight. larkel@locl.net


Scott Brown's December 4 reply to Tracey C's December 3, 2002 - Hi Tracey, I agree with one of Jon's suggestions, the electrolyte imbalance. I get little muscle contractions after I have had an effective course of diuretics. Also, when your electrolytes are low enough to cause the spasms, you often feel "tragic" (nausea and fatigue) as well. Potassium usually helps within an hour. Try bananas, orange juice, or the doctor can prescribe Slow-K if you are not getting enough from food. I hope it's as simple as that. Scott B. kitchenerguy@hotmail.com


Donna, December 5, 2002 - Hi, I was diagnosed with cardiomyopathy in March of 1998 when I collapsed in a parking lot. Five days later I received an ICD. I am now trying to lose weight and joined Healthy Inspirations. Part of the weight loss program is drinking 8 glasses of water daily. I have a slight problem with fluid retention, although my physician will not prescribe a diuretic because my potassium was low at the time of my collapse. My current doctor says it is okay to consume this amount of water, but I am noticing swelling of the abdomen and ankles. Are most cardiomyopathy patients allowed to drink this much fluid? Donna. dcarroll@visuallink.com


Jon's December 5 reply to Donna's December 5, 2002 - Hi Donna, Fluid restriction is a matter of opinion in today's medical world. First things first, though. Almost every diet ever invented encourages lots of water intake. That's because it encourages a quick initial weight loss. Most "healthy" people don't drink enough water. Doing so encourages your body's regulatory system to stop retaining fluid because it knows it is getting enough input every day to make extra fluid storage unnecessary. That quick initial weight loss is just stored fluid draining off, not fat.
     Is it okay for a CHFer? That depends. After all, our regulatory systems are often out of whack and may not react like a healthy person's.
     The very first recommendation in the official CHF treatment guidelines is a diuretic. Now, you may not need one but the reason you were given is totally bogus. Do you take an ACE inhibitor (the second reommendation and the strongest one)? I would certainly hope the answer is yes! If you don't, get another doctor today! If so, is your potassium still low? Are your electrolytes checked regularly?
     An ACE inhibitor usually raises your potassium levels. If they are still low, you should already be taking a slow-release prescription potassium. So either your levels are low and you should already be taking potassium for that, or your levels are not low and you still have not been given a diuretic. I don't know if you really don't need one or if your doctor is not on the ball.
     Whatever, something doesn't look right to me. Now, I know this is online and long-distance, and things are always more complicated than they seem this way. Think it over and decide whether your treatment is right for you before approaching a weight-loss program.
     If you are treated per the CHF guidelines and your CHF specialist - not your regular doctor - okays it, I'd say 64 to 96 ounces of water a day is fine. However, no one here can say one way or the other in your case because your treatment does not seem to be standard, and we don't know why not. We also don't know what your test results indicate or how you are feeling. We just don't know enough to even guess.
     I am sorry to seem vague but weight loss is a hot topic and it's wise to be sure everything else is in order in your health situation before stirring that pot. <g>
     PS. I am not proofreading my own posts now due to lack of time so if I seem to make little sense, please jab me one so I can take more care. ;-) Jon.


Myrtle C, December 5, 2002 - Hi, My cardiologist thinks my weight gain contributes to my fatigue and I agree, but what with the chest pains, fatigue, and breathlessness, it is not possible to get the level of activity to lose some 20 to 25 pounds. He suggests trying Xenical. His directions and the pharmacist's were a bit different. I know this is not a miracle drug and it can have unpleasant side effects plus the price, which insurance won't cover, is high.
     Has anyone taken Xenical? If so what were the problems, if any? Thanks for your help, my friends. omie@axs4u.net


Myrtle C's December 5 reply to Joanna's December 4, 2002 - Hi Joanna, I will be praying for you. I imagine this is a little more then you can cope with just now. Read The Manual to find out more about the questions you asked about. Take heart (no pun intended), your life isn't over.
     Gratitude is one of the greatest prayers. CHF has caused me to be grateful to God for much more then I ever was before. Bunches of hugs and prayers. omie@axs4u.net


Misty, December 5, 2002 - Hello all, I am 26 years old and I just found out that I have to have a heart transplant. I was born with 3 heart chambers and had open heart surgery when I was 10 (the Fontan) and now I am in CHF with pleural effusions and ascites in my abdomen. I would love to talk to anyone who has had or is waiting on a transplant. God bless, Misty. knappfan@yahoo.com


Ben B, December 5, 2002 - Hi, After 4 years of disability I am now engaged in a very scary job search. Although I have been working part-time at various teaching jobs for the past year or so, I am now under review for both of my disabilities and have decided to give a shot at some full-time engineering jobs. I have a few interviews in the next couple of weeks and believe me, it is a frightening thing.
     The problem is that I have basically lost the support of my doctor for disability and the truth of the matter is that it has been so long since I had any sort of a bad day that I am not sure I can honestly say I am truly disabled anymore. I really am capable of doing a lot.
     To some extent it becomes a moral question to me. At my last echo, my EF was around 40 to 45%, and my doctor thinks I am capable of working. I'm not sure he is wrong. The SSA has basically told me that if my doctor will just submit this limitations form they will approve me and I will probably still try to get him to submit this thing so I can have some sort of a safety net on all this. I don't know what my chances will be.
     I guess this is just venting. All of this is very confusing to me, and I guess I should just be grateful I'm feeling okay. Five years ago I didn't think I'd be around at this time. bdbrinkman@juno.com


Glenda, December 5, 2002 - Hi, Blessings all. I just found this site last week. By turns it has terrified me, encouraged me, inspired me, saddened me, and awed me. It has also reminded me to keep my heart and mind on today and my eye on tomorrow.
     So today I took my rollator outside, gathered a little firewood and, with only a little help, built a fire to brighten this cold winter day. I haven't done that since I got CHF. My partner Joyce is trying to cope with a new emphysema diagnosis. I cried some, laughed some, got tired (what a surprise), found some gallows humor inside me - and yes - some joy. Thank you Jon, for your willingness to follow where you are led. Bless you all for your courage, srength, and fortitude. May Great Mystery hold you close. Coyotelive@mac.com
 
Jon's note: God's no mystery. Just ask Him, He loves you. If He was a mystery, a person as dense as me would never had understood what He wanted me to do ;-)


Jon, December 5, 2002 - Hi everyone, If you want to return your topics ratings, I'll need them really quick. We finish tallying them late tonight or tomorrow. Thank you all for a huge and enormously helpful response! This was the strongest response I have ever received on any request! Jon.


Cat, December 5, 2002 - Hi, I am scheduled for a colonoscopy and was instructed to stop taking my Lasix and potassium 2 days before the exam. I'm now worried about all the saline laxatives that are prescribed for prep. Any input would be appreciated. Thanks. lafsalot2000@yahoo.com


Jon's December 5 reply to Cat's December 5, 2002 - Hi Cat, This is a very real concern. Dr. Marc Silver replied to a reader about those IVs with saline solutions and said they were a very bad idea. See this (let it load). Get in touch with your heart failure specialist directly - not his nurse - and have him talk directly to the doc prescribing the required stuff for your procedure. Make sure it happens! Jon.


Sheryl C's December 5 reply to Roz' December 4, 2002 - Hi, Well it seems we are also the caregivers' page this week. I feel the pain of the loss of your mom, Roz. I have already lost my father. I hope to have my mom around a lot of years. In that spirit I will nag her about choices.
     My mom's idea of lunch, or breakfast and dinner, is brown sugar toast. Since coming to live with me a year ago she has lost 25 lbs. I have taken the time to teach her about better nutrition and cook all the meals to make sure she eats right. She has had a broken knee and shoulder surgery in the past year. Her choices about many things are no longer as smart as they were when she was younger. Part of adult dementia is paranoia about caregivers. It is hard to balance doing what is right for a loved elder person and feeling like a nag.
     I preface suggestions with a reminder that I love her and want to keep her healthy, and we discuss the choices. I usually have to repeat the talk about why I am questioning her choice. Her memory for discussions isn't real good. We then discuss a compromise or better choice. Like being a parent to our kids when they did not make good decisions, I am firm about some things. She is not always pleased with me.
     Remembering to treat her with respect while trying to make her change her mind is frustrating at times. I especially have to watch myself when I don't feel that hot. Since my mind is shot from my meds, I lovingly and silently refer to us as "Dumb and dumber." Since she still reminds me of chores to finish or to take a coat, I figure we are about even on the nagging, Sheryl. cvprehab@hotmail.com


Michael S' December 5 reply to Dave's December 4, 2002 - Hi Dave, Do you take potassium when you take furosemide? You also mentioned getting more fatigue. I have to exercise regularly or I am in horrible shape. Talk to your doc about cardiac rehab also. My other suggestion is make sure your cardiologist, better yet heart failure specialist, is involving you in your treatment. kamikaze99@charter.net


Krista's December 5 reply to Dave's December 4, 2002 - Hi Dave, I received a heart transplant about 2 years ago but prior to that I had hypertrophic cardiomyopathy, which developed into CHF. I also had no documented episodes of VT, but did have a lot of episodes of supraventricular tachycardia and arrhythmia. I still received an ICD coupled with a biventricular pacemaker. Even though I had not experienced a known episode of VT, I was still at a very high risk of having one (as you probably are too) and my doctor approved the implant.
     During the procedure they were easily able to induce a VT episode, which just verified their decision. Sure enough, about 3 months later I experienced a serious episode of VT, passed out for a couple of seconds, and my ICD shocked my heart, letting it go back into normal rhythm. After interrogating the device, it showed that my heart had been beating more than 300 beats per minute, and the rhythm would have been lethal without the ICD shock.
     Despite the fact that you have no documented episode, I encourage you to completely discuss this with your doctor. Good luck, Krista. kristalosey@hotmail.com


Marly's December 5 reply to Donna's December 5, 2002 - Hi, I have significant fluid retention at the moment, which 100mg of furosemide cannot handle. I have increased weight in the past 3 weeks by 20 lbs. I get occasional muscle cramps but I take slow Mag, and tonic water with quinine and Gatorade to counter the cramp episodes.
     I suspect this fluid retention is due to, or worsened by, my starting and uptitrating Coreg since 3 weeks ago. My current Coreg dose is 3.125mg twice a day. I am also taking ramipril (Altace), spironolactone, amiodarone, digoxin, CoQ10, L-carnitine, insulin, and avandia. I also have an ICD and had a mitral valve repair about 5 months ago.
     The literature on Coreg says CHF symptoms can occur when taking Coreg, but only temporarily. I already tried Coreg about 3 months ago and had worsened CHF symptoms (apnea and edema) and had to stop it. However, the doctor says my body can learn to tolerate Coreg and it can do wonders if I can reach the therapeutic dose. I intend to enter Club Med next week to drain myself under the watch of my cardiologist. Any experiences to share about this? mcardenas@pacific.net.ph


Lori K, December 5, 2002 - Hello all, For those of you who saw my last post, I just wanted to send an update about my excessive tests ordered by my new CHF/transplant doc. I decided to go ahead with the echo, CPX, and MUGA. However, when I got to the echo they told me they had to rule out atrial septal defect (hole in the heart) and to do so I had to get a series of saline injections via IV before the echo. Has anyone ever heard of this? I thought holes in the heart were only in infants. Can someone survive 43 years with one?
     Anyhow, this doc continues to surprise me with new tests for reasons unknown. If anyone has info on atrial septal defect, it would be appreciated. Yes, it is pretty sad the doc did not tell me anything about why he was doing these tests. It may be the surgeon factor. I asked my doc who referred me to him to ask him why and I am awaiting a response. Thanks ahead, Lori. thrgoof86d@aol.com


John S' December 5 reply to Ben B's December 5, 2002 - Hi, Has anyone noticed that most of these EFs are rounded to the nearest 5%? Although I haven't seen the latest machines, EFs were a pure "eyeball affair" initially done by a tech, unless changed by the cardiologist. What I'm trying to get at Ben, is maybe you're closer to 55% rather than 35%. This might explain why so many posts mention a divergence between the way they feel and their EF. Also, it seems that EF calculations were along a linear axis rather than a volumetric calculation. Are new machines changing all this? If so, then maybe EFs need a notation of sorts. Any thoughts? John. drjohnmd2000@yahoo.com


Jon's December 5 reply to John S' December 5, 2002 - Hi John, I have heard error margins of +/- 5 to 8% on EF by echo. Unfortunately, it is still a subjective "art" rather than a purely mathematical calculation as in MUGA or direct pressure reading as in cath. However, the software and 2d and 3d echo equipment is changing so fast, I can't keep up with it. My own CHF doc gives me a range rather than a specific number when measuring my EF by echo. Jon.


Dave's December 5 reply to Michael S' December 5, 2002 - Hi Michael, Yes, I take these together in the AM as I have for the last 1-1/2 yreas or so and I don't have an exercise program. I've thought work would be enough but I've been told that I should talk to my cardiologist about it. I would like to be more in on my treatment but I might have to change docs.
     Kristas, I have had a lot of palpitations and the occasional hard beat and weird rolling sensation in my chest. I have heard several things that I wasn't aware of that might apply to me. I am still waiting to hear from this intern that I talked to. Heart transplant scares the bugiebees outa me. I never thought about it till I read Jon's post about transplants, which made me think about it. I'm not sure what I'd do either. You can't beat what God has created. I always think of car mechanics replacing parts and doing tuneups, I think docs are that crude. God creates, we rearrange. Dave. divad01@earthlink.net


Catherine L, December 6, 2002 - Hi Jon, Should you add a few caveats on the use of coreg and other heart drugs that lower blood pressure, so other CHFers can be aware of this possible complication? Monday I started having severe cramps and bloody stool. At first I thought it was just constipation because I felt better after a huge bout of diarrhea. However, when the cramps and bloody diarrhea resumed on Tuesday night after I ate, I went to the emergency room.
     I already knew the Altace (2.5mg per day) and Coreg (12.5mg per day) I was on had lowered my blood pressure into the 90s/60s or so. What I didn't know was that low blood pressure can prevent the intestines from getting enough blood, causing them to bleed inside. It's called ischemic colitis and left unchecked can kill you.
     I have idiopathic CM, diagnosed around October 1st. There is no dilation of my heart, just a weak left ventricle with many PVCs and some PACs, no high blood pressure, no cholesterol problems, I'm not overweight, I worked out regularly, and had zedro risk factors. I kind of fell apart in the hospital when they said the cause of my problem was my heart meds. I thought I had arrived at a level of Coreg I could tolerate and still get good benefits from it, although I knew I probably couldn't go higher on the drug due to my low BP.
     I am trying to take this all in stride. They stopped the Altace and Coreg and I am starting my heart drugs all over. I am now on 12.5 mg/day of Toprol-XL and nothing else for now. Maybe an ARB will be added in later but I am afraid. Do you think I'll have a rebound effect from stopping my old drugs? I get so freaked out when my heart goes postal and acts like the creature in Alien trying to get out of my chest. I am so sad, I feel like I am doomed or something because I can't seem to tolerate ACE inhibitors (at 5mg Altace I coughed horribly) or Coreg - the beta blocker of choice - because of my low BP, which lead to the ischemic colitis.
     I hope you are well now, Jon. We CHFers need you and your web site! I am making a handmade Christmas card to send to you along with a donation this month. I hope you like it. I asked Dr. Porter about having a VO2max test and he said it wasn't necessary for me. I am in class one, stage B heart failure, with high functioning. Maybe I am pushing too hard from anxiety, but last month I walked about 30 miles per week, about half of it at 3.5 mph on a 5% or so incline on the treadmill. I don't get wiped out afterwards, but then I was working out regularly before my CM so maybe I am just conditioned enough to tolerate this level.
     Albert Camus wrote, "In the midst of winter, I discover the invincible summer within me." I have a wish and that is that all of us CHFers keep our summers alive in our hearts forever. Catherine. ccash@kcnet.com


Jon's December 6 reply to Catherine L's December 6, 2002 - Hi Catherine, I have whole section at the top of our Coreg page listing lots of various possible side effects to watch out for, including low blood pressure. There are 5 links listed immediately after that section leading to 5 more pages full of Coreg information, including side effects. I also link to text files on the same info at my text info page. If anyone can think of ways to make information more clear on any page, I am all ears. On this one, I just don't know how to bring it more to the fore.
     In most people a blood pressure of 90/60 is not extremely dangerous. My blood pressure was considerably lower than that for many months at one point in my CHF treatment with no dangerous side effects, although I sure was tired! In fact, no one at my Doctor Porter's office could even find a blood pressure in me for several months. He wants me at about 100/70 permanently, if possible. Obviously, everyone reacts in a different way to drugs and drug combinations, as well as to CHF itself.
     I am sorry to hear you had such serious problems. I do have to walk a fine line between calling it like it is (something I always really try to do - keeping me on the outs with much of the medical community) and just plain scaring people away from drugs in general by overstressing the bad possibilities over the good possibilities. It ain't easy and I try to focus on honesty. That's why I have such a big section on Coreg side effects on our Coreg page. I just assumed it's pretty easy to find, but maybe I'm wrong. If anyone has suggestions, please e-mail them to me. I'll take them quite seriously.
     Catherine, I can't imagine you being in better medical hands than Dr. Porter's. He really is very much on top of CHF info from all over and he is one of the most patient-oriented doctors I have ever met. After all, he's my CHF doctor and I would drop him like a hot potato if I was not satisfied with my own treatment, I promise you.
     Two things should be said here, I think. First, everyone does not have to take all the CHF meds to get all the benefits they need. You were diagnosed before getting a lot of heart damage and that's the best thing that can happen! Life style changes will work with the meds you do take to maintain your heart function. Follow that low-sodium diet, try taurine and L-carnitine, and keep your weight where it should be for you. Work at getting one med where Porter wants it, then think about taking further steps, but don't sweat it. I'd give a lot to be in your current shoes myself.
     Number two is that peace is not a physical result. Mental, emotional and spiritual factors are heavily at play in finding peace in your life. Pursue useful mental activity, emotional satisfaction, and spiritual closeness to God at every turn; then the physical often improves for no visible reason. That's been the case quite strongly for me and many others. Health ain't just the body being in good shape. I prefer the quotation from Paul, "But though our outward man perish, yet the inward man is renewed day by day." ;-)
     Finally, I like donations and I love cards but never give to me any resources you need. I mean it. That's not why I do this, never was, never will be. I admit that when I mentioned my last birthday and got so many presents (our incorporation resulted from that), I really liked the wonderful handwritten comments that came with the gifts and so did my wife. She gives up a lot to allow me to do this every day. Jon.


Joe S' December 6 reply to Bernard Z's December 5, 2002 - Hi, Like you, I have been having muscle cramps all over, so badly sometimes that I can't even move. At the same time, heavy depression and paranoia hit. I have an appointment next Monday with the doc, but would like some input before. I'm taking 40mg Zestril, 40mg furosemide, 4mg of folic acid and 5mg Norvasc. My wife thinks the cramps are from using more weight and my muscles contracting. Any ideas? Joe S. jes@gbis.com
 
Jon's note: Have you tried a long-term magnesium supplement?


Scott Brown, December 6, 2002 - Hi, I notice my heart pumping fast or "harder" after I take my evening meds of Altace, digoxin, and Coreg. Heart irregularities right after you take meds is usually normal. That is why I take these in the evening. All of the "bad" stuff happens while I am hopefully sleeping. If I forget to take my Coreg, I get the same effect. Try to take note of any notable heart events relative to your meds. Sometimes things can be as easy as that. Thanks, Scott B. kitchenerguy@hotmail.com


Donald Grande, December 6, 2002 - Dear Jon, My observations regarding general practitioners, cardiologists and CHF specialists matches yours quite closely. Thanks for running the site.
     My question is: I was initially put on Vasotec, along with the other usual kinds of drugs. I had a dry cough and the EP doc switched me to Diovan. I had a very wet cough then! I am now on Altace. I have a mild, somewhat productive (i.e., I cough up a little goop) cough. I think we are hoping to find an ACE inhibitor with no cough or the least offensive cough. Has anyone out there gone through this sort of search before? donaldgrande@msn.com


Michael F, December 6, 2002 - Hi Jon and CHFers, I am a CHF patient. My heart is too big and my left ejection fraction was estimated to be about 15% about 10 years ago. I have been trying to prevent further deterioration of my dilated heart and valve leakage by taking health classes, self-education, proper dieting, vitamin and mineral supplements, and exercise. For a period of years I became a strict vegan and ate lots of raw food. Later on I got tired of this type of diet and now I am a just a vegetarian.
     I believe that my heart function improved because of diet and exercise at least at the surface, but now I know that regardless of my good efforts, my heart is getting enlarged too much and the valve leak is significant. A few years ago my LVEF was estimated to be between 15% to 20%. Doctors do not like go into much detail except for the sad fact that this disease is supposed to get worse with time. My heart medication has been increased on a progressive basis. Now I am taking 10mg Vasotec, 0.125 Lanoxin, 20mg Lasix, 2mg Coumadin, and 3000mg niacin on a daily basis.
     I discovered your group while doing research on Coreg. Last week my cardiologist added Coreg to the medications that I am already taking. I am scared since I take already too much medication and the addition of Coreg might worsen the quality of my daily life. My doctor added Coreg with the hope that a combination of 10mg Vasotec and 6.25mg Coreg per day might decrease the size of my heart and in a few months, we might be able to perform a heart surgery to fix my valve leakage. Could anyone give me some comments and insights? Thank you, Michael F. mefce1@aol.com
 
Jon's note: It sounds like a smart plan to me :-)


Natalie K's December 6 reply to Catherine L's December 6, 2002 - Hi Catherine, What a beautiful post. Thank you for writing it. mcnat45@yahoo.com


Amelia's December 6 reply to Lori K's December 5, 2002 - Hi Lori, I am so sorry you have had such a bad time. I know what you went through with the colon bleeding since my son in law had the same thing happen to him 6 months ago. He had a colonoscopy and found out ischemic colitis was the cause of his pain and bleeding. His doctor told him it was from having high blood pressure and didn't say anything about his meds, but he had to rest, and take liquids and baby food for about a month before he felt better. Good luck to you and I wish you well. Best to all, Amelia. amelias@erols.com


Amelia's December 6 reply to Lori K's December 5, 2002 - Hi Lori, I have interatrial septal aneurysm with a hole (shunt) that was found from having a transesophageal echocardiogram. I didn't have any saline injections or any preparation for this procedure. I did have an IV for meds during the procedure which knocked me out. I have had several TIAs and one stroke so with this finding and a-fib I am being treated with Coumadin. Good luck and best to all, Amelia. amelias@erols.com


Myrtle's December 6 reply to Joe S' December 6, 2002 - Hi, For what it is worth, I have severe cramps in my legs and feet when I have a lot of edema. I know doctors say it is from loss of potassium or magnesium. For me, if I keep the fluid down I don't have the cramps. omie@axs4u.net


Phill's December 7 reply to Marly's December 5, 2002 - Hi, Coreg, the CHFer's drug of choice. It took me 2 extended hospitalizations to stop decompensating on Coreg. I was class 4 and didn't have anywhere to go. The first time I was given Coreg, I was in the hospital and my BP dropped to 50/40 and I turned the color of an eggplant. I tried and they finally sent me home and asked me to keep trying over Christmas.
     Five weeks later I still could not handle more then half of a 3.125mg tablet once a day. My BP stayed below 100 and often fell into the 70s. On my last trip to Club Med, I was given Natrecor for 3 days, then IV milrinone for 29 days. As the milrinone dose lowered, the Coreg dose rose and by the time I was released, I was at 12.5mg daily. Within a month, I was at 25mg. There are days when I am a little tired from it (a Coreg day) but for the most part I'm just a ray of sunshine. It will be one year in January that this all happened and I am looking at going back to work/school this coming January. Good luck and don't give up. Best wishes, Phill. Phillgonder@aol.com


Sheryl C's December 7 reply to Michael F's December 6, 2002 - Hi Michael, I know Coreg improved my heart and my quality of life. It took me 3 tries on the last increase to get up to the dosage at which I am today. Then someone wrote in that they increased only their night dose for a while, then went up on their morning dose also after their blood pressure adjusted. That worked for me too. I am still not at the target dose but I am going for an increase soon. Be like the "Little Train" and know you can. cvprehab@hotmail.com


Tom S' December 7 reply to Michael F's December 6, 2002 - Hi, When I read things like the meds doses in your post and that your doctor finally added Coreg, particularly after reading that your LVEF was estimated to be between 15% to 20%, I begin to wonder what my condition must be. I take nearly 10 times as much Coreg, 3 times as much Coumadin, and I can't even calculate the differance between 20mg of Lasix and the 720mg I take a day. It makes me wonder if your doctor is not giving you high enough doses of medication to "maintain" you like I was told my drugs are doing? bigheart@muchomail.com
 
Jon's note: Just out of curiosity Tom, why don't you take Demadex or Bumex instead of Lasix, considering your Lasix dose is above the usual maximum?


Jon's December 7 reply to Michael F's December 6, 2002 - Hi Michael, Everyone else has you pretty well covered but I just have to say this. If I were in your shoes as long as you, and my doctor waited until now to try me on Coreg, even though the drug has been approved for years, drastically reduces risk of death, and is demanded by the official CHF treatment guidelines, I'd drop him like a sack of dirt and get me a new heart doc, but fast. I had to say it. Jon.


Gino's December 7 reply to Catherine L's December 6, 2002 - Hi Catherine, In the presence of an arterial vessel partially blocked, any drug able to lower BP (ARB, ACE inhibitor, diuretics other than beta-blockers) may cause ischemia (reduction of blood flow in the organ supplied by that partially blocked blood vessel). This can happen in the brain, kidney, heart, bowel, etc.
     Your experience is very curious because in the many and many CHF patients I care for, I never saw this. It raises many questions in my mind: was your low BP so low or lower before or after your diarrhea (that can cause low BP); and was the diagnosis of ischemic colitis definitely confirmed or not? Have you seen a specialist for your bowel problems? Best regards, Gino. gitarant@yahoo.com


Joe S' December 7 reply to Myrtle's December 6, 2002 - Hi, It turns out all those horrible symptoms were the result of a bug bite, in fact two. I have no idea what bit me but I was really in bad shape for awhile. I feel great now, Joe S. jes@gvis.com


Tom S' December 7 reply to Jon's December 7, 2002 - Hi, I have had some dicussion in that direction with my doctors but never came away with a satisfactory explanation from them. I am just told to keep taking the Lasix like I always have. I do take another drug called Aldactone (spironolactone) at 25mg daily, which is supposed to be a potassium sparing diuretic along with the Lasix or in my case a generic version of the same issued by the Veterans' Administration. However since you mentioned specific drug names, I will ask in my next go around with my cardiologist or primary care physician at the VA. Thanks. bigheart@muchomail.com


Jon's December 7 reply to Tom S' December 7, 2002 - Hi Tom, Spironolactone is given to us at 25mg to reduce mortality due to the RALES trial results. At that dose however, it has no noticeable diuretic effect at all. Jon.


Craig B's December 7 reply to Michael F's December 6, 2002 - Hi Michael, I too have to agree with the others here. Coreg (Dilatrend/carvedilol in Australia) is the one that keeps me alive! I am on 50mg of the stuff, believe me, I'm glad. Before it, I may as well have been dead. My Lasix is also way higher (nearly triple) that of your stated dose. Glad ya found us. Good luck. bayce@optusnet.com.au


Raija's December 7 reply to Lori K's December 5, 2002 - Hi Lori, I tried to send you an e-mail but the e-mail address was not correct and it came back to me, so I answer this way. I have had DCM/CHF since May of 1997, when I was diagnosed. At that time my EF was 15%. Now it is normal, something like 70, which is actually high-normal. I am still on medications because I refuse to go off them. Fortunately my cardio doc agrees with me. I take Coreg, Lasix, Lanoxin, and Cozaar.
     Anyhow, in July of 1997 when I had a cardiac cath, my cardiologist noticed a hole in my heart when the catheter lead went through my heart wall unexpectedly. As I remember, he said it is not that uncommon and actually of no concern. I was at that time 53 years old. Probably he is right. How could I have lived 58 years if it was dangerous and life threatening?
     I hope everything is okay with you. Why your doctor insists on so many tests, I don't have a clue. Mine did not and I am feeling pretty fine now. I am also still working full-time 5 years after my diagnosis at an office job. I wish all the best to you, Raija. raija@juno.com


Tom S' December 9 reply to Jon's December 7, 2002 - Hi, A web site I found relating to Aldactone (spironolactone) and the RALES study you mentioned in your response may be of general interest to others but is highly technical because it was written for and by MDs. See www.scahq.org/sca3/newsletters/2001oct/mancini.shtml. bigheart@muchomail.com


Myrtle's December 9 reply to Raija's December 7, 2002 - Hi, I am glad you are doing well. You write about the hole in your heart the doctor found when the catheter lead went through your heart wall. As I remember, he told you it is not that uncommon and actually of no concern.
     This sounds more than strange to me. Did he repair this hole? Or are you living with a hole that could have occured because the catheter lead was pushed through the heart wall? Surely not? I am a doubter and if a doctor told me that I would want to see my records for certain. To God be the glory, Myrtle. omie@axs4u.net


Joe Enders, December 9, 2002 - Hi, I was wondering if you have a location on your site for dosage level minimums and maximums. I'm on 120mg Lasix, 25mg coreg BID, 0.25mg Lanoxin 25 mg, and 20mg zestril. I have started having large weight swings lately. ramblingrosarian@yahoo.com


Jon's December 9 reply to Joe Enders, December 9, 2002 - Hi Joe, I don't have a page listing this info but I do have "target doses" listed for many drugs here. I also have links to sites that supply full prescribing information for drugs, and I have trial doses listed for beta-blockers. Your doses listed here are a long way from maximum, though. Weight swings are different from weight gains, so I can't say much, certainly not without more info (and maybe not then - I'm no doctor <g>). Jon.


Misty, December 9, 2002 - Hi, I am not sure who wrote it but did someone write that spironolactone is not a diuretic? Did I misunderstand? I take it as an addition to my diuretic and it does not make me lose potassium. Is this correct also? Misty. knappfan@yahoo.com


Jon's December 9 reply to Misty's December 9, 2002 - Hi Misty, Spironolactone is a diuretic but at only 25mg a day, it has no diuretic effect. It is still of great benefit to CHFers though, because it helps control aldosterone, a body chemical that causes us CHFers problems. At 25mg a day, Aldactone is also proven to lower our risk of death. It is a potassium-sparing drug, meaning it helps your potassium levels stay up. Jon.


Joseph P, December 9, 2002 - Hi, I went in for my normal monthly visit and blood check. Everything looked good and the CHF doc said I needed to put on more weight (I weigh 155 lbs) and to increase my salt intake because my blood was dry. Has anyone heard of this? joeandol@shawneelink.net


Joe S, December 9, 2002 - Hi, Saturday and Sunday were two of the worst days I've ever had. Sunday morning I couldn't think or remember anything. I was doing so well up until then. The only thing I can tie this to is an insect bite on my hand. I also have had a lot of problems recently, which have increased my blood pressure. Does anyone have any ideas or suggestions? Jes@gbis.com


Mike, December 9, 2002 - Hi, I know this topic must have been discussed before but is memory loss, mostly short-term, a common side effect of the drugs or the disease? My wife thinks I may be developing Alzheimer's but it seems this started about the time I was diagnosed and started treatment. msisbell@earthlink.net


Catherine L, December 9, 2002 - Hi Jon and Gino, I am still waiting for the results of the tests and will let you know whether ischemic colitis is what caused my intestinal bleeding. This whole thing started very suddenly with severe cramping, then bloody diarrhea, then more of the same a day later. I know it wasn't constipation! My blood pressure (about 90/60) wasn't that low, so I can't figure it out. I don't know what my blood pressure was when I was bleeding. I should've taken it, but thought I was just constipated. I am now in the care of a gastroenterologist, working with my internist and cardiologist. I've lost 25 lbs. since October 1st when I found out I have heart failure, including 5 lbs from last week, and am pretty wiped out. But then aren't we all? <g>
     One thing they did was make me drink what looked like a gallon of foul, cherry-tasting liquid to empty my colon for a colonoscopy. The label on the container made my hair rise as the sodium chloride and potassium whatever (I can't recall the names exactly) in the liquid were high! It seemed like 15 grams total sodium! I was adamant about no saline IV when I went into the hospital, but took the colonic because I saw no way out, and was scared about the bleeding. Is there an alternative to taking such a salty colonic? What do we do in these situations?
     I guess I made a poor impression on the internist that saw me while I was hospitalized. I admit I lost it when they said they'd have to stop my Altace and Coreg, and I cried a fair amount. I managed to read my chart and the doctor said I "refused an IV" - not so, just a saline IV, and was "obsessive compulsive about CHF information"
     I'm new at this and scared. I thought an informed, involved patient is a good thing; why can't I ask questions? There were a few other off-the-wall statements in my chart which made me laugh, because I realize how doctors can get it all wrong. I'll try to be calmer on future doctors' visits. I had better mind my Ps and Qs or they'll write me off as a total nut case. Then part of me asks, where is the compassion in these doctors? How would they feel if, within 3 months, they lost their job due to an inability to sit (pinched nerve which keeps me from driving or sitting), then got CHF, then had to sell their new house due to financial reasons?
     Sorry to go on like this. I have a lot of emotional and spiritual issues to work on, and am seeing a therapist. It sure didn't help to read in Marc Silver's book (p. 46), "The majority of patients die because of progressive weakening of the heart muscle." ccash@kcnet.com


Jon's December 9 reply to Catherine L's December 9, 2002 - Hi Catherine, Right now, you're viewing everything through fear-tinted lenses. This is not unsual soon after diagnosis, believe me. As time passes and you're still breathing <g> you'll begin to read the same things in a different light. Dr. Silver, for instance, was comparing patient types and he meant that more patients die from "pump failure" than from arrhythmia or the unusual causes he then goes on to discuss.
     I can't really speak to some of what you say because I don't know enough, but you can write a formal letter and request it be placed in your medical record that denies anything any doctor has placed there or outlines circumstances or misunderstandings. You will need to do this with every single doctor and institution involved. After doing so - if you do - order a fresh copy of your entire medical record from each doctor and institution to make sure it has indeed been placed in the record.
     There is no such thing as too much knowledge about your condition. However, interpreting and coping with all that information is a different process at a different pace for each person. If you inhale too much at once, it can choke you. ;-) Take your time and digest each piece of information as you find it instead of bolting it all down at once. It's easier to organize and use effectively that way. Jon.


Tom S' December 9 reply to Joseph P's December 9, 2002 - Hey, If we hadn't heard of a high salt diet before, We have now! bigheart@muchomail.com


Shirley V, December 9, 2002 - Hi to everyone, I was wondering if anyone here ever had gallbladder surgery after having heart problems. I have a large gallstone attached to the lining of my gallbaldder and need surgery. Of course I will get the okay from my heart doctor but I am still very worried. I have cardiomyopathy with ejection fraction of 35%. I would appreciate hearing from anyone that has had this surgery. Thanks for this great site, Jon. I read the posts every day. shirleyv@cwis.net


Jon, December 9, 2002 - Hi everyone, Don't forget that if you want to receive heart info mailings, you can sign up at www.chfpatients.com/lists.htm. Jon.


Jon, December 10, 2002 - Hi everyone, to anyone on Medicare who has angina that does not respond to standard treatment, HCFA has reversed their 1997 decision and will now cover TMLR for you. See cms.hhs.gov/media/press/release.asp?Counter=105. Jon.


Barbara Hunter, December 10, 2002 - Hi, I've written in the past on behalf of my dad who has CHF but does not use a computer, and I often read the posts for my own education. Overall, things have been going well since he was diagnosed 14 months ago but recently he has noticed that he burps more often than in the past. With all his burping, it causes a bit of an upset stomach, which in turn decreases his appetite. Has anyone experienced this sort of problem? Any and all advice would be appreciated. BarbHutter@yahoo.com


John's December 10 reply to Tom S' December 9, 2002 - Hi, Excellent overview. Give me more! I think reverse remodeling will be the key to a cure, and it looks like spironolactone plays a role. I saw some electron micrographs (at a CHF conference) of heart muscle that showed myocyte renewal with spironolactone. I wonder though, if the half-life is only 1.4 hours, why are we taking this only once a day? Is it because the RALES study is the current precedent? Anyone? Thank you. It is so nice to have links, for I have become quite fuzzy as well. My guess, it's the target doses of ACE inhibitors that we take. I have a solution, if I could just, what did I just say? drjohnmd2000@yahoo.com


Jon's December 10 reply to John's December 10, 2002 - Hi John, I once asked my CHF doctor why no one paid any attention to the fact that blood levels of Coreg are much higher in elderly people than in young people at the same dose. He said that one lesson he learned in the incredible rush of medical school was to look at the bottom line: does it really matter if the blood level is higher? In that case the answer seems to be no since elderly people seem to have the same benefits and risks with Coreg despite that difference. Unless someone decides to sink money into a new trial, that may be the attitude to take here as well. <g>
     If you like reading, have you downloaded the full set of links from my site? See www.chfpatients.com/urls.htm. Jon.


Emil's December 10 reply to Mike's December 9, 2002 - Hi, I'm 32 years old and no one's told me I have Alzheimer's that I can remember. My problem is more to do with concentration and focus. I can't seem to carry on a conversation at times without getting lost in thought. Other times I will just stare off into space unaware of the time. I know the meds have some side effects, but I read somewhere that when people are hooked up to certain machines during heart surgery, that the memory can be affected as well. spaeth@ruralnet2.com


Chuck Hs December 10 reply to Catherine's December 9, 2002 - Hi, There is a solution called LoSo Prep designed especially with heart and blood pressure patients in mind. I haven't had a colonoscopy but my wife just did, with the usual 10 grams of salt. She, with no heart problems, developed some edema although it was very transient, and was very uncomfortable. Therefore, I did a little research and found out about LoSo Prep, with only 35 mg of sodium, plus it is only 8 ounces for those who can't do fluid overload. dominico493@cs.com
 
Jon's note: is there a web page we can look at on it?


John Rice, December 10, 2002 - Hello everyone, I am just checking in with all of you. I was diagnosed in 1998 with viral cardiomyopathy. My EF is up from 8% to around 30%. I had an AV-nodal ablation in September and I have felt a lot better since then and at least my defibrillator has not shocked me in awhile. I am off Aldactone (spironolactone) but still on all my other meds: 25mg Coreg per day still makes me pretty tired. I hope everyone is doing well. djhrice@sbcglobal.net


Misty's December 10 reply to Jon's December 9, 2002 - Hi Jon, I am taking 25mg of spironolactone so I guess maybe it is more diureticy for me. I would really like to talk to someone about transplants. Could you recommend someone? Misty. knappfan@yahoo.com
 
Jon's note: Try here


Janet T B, December 10, 2002 - Hi Everyone, I have a question for any takers. I have IDCM with an EF around 30 to 35% diagnosed in 2/02. My heart is not that enlarged and has been about this size for at least the past 9 years. My question is, since my heart is not that enlarged (upper limit of normal, though I think that is for a man) and thus no substantial reverse remodeling will take place, does that mean my EF will not rise appreciably? Janet T. B. jtitus@chestnut.org


Chuck H's December 11 reply to Jon's December 10, 2002 - Hi Jon, Yes, here is the web page: www.endonurse.com/articles/281feat1.html. dominico493@cs.com


Jacky, December 11, 2002 - Hi, When I was working out last week someone asked me if I was bored! I wasn't, I love to work out. When I asked why, he replied I yawn a lot when I exercise. Strange! Any thoughts? Jackymwb@aol.com
 
Jon's note: You may be short on oxygen - concentrate on regular breathing when exercising, in through the nose and out through the mouth


Herbert L's December 11 reply to Barbara's December 10, 2002 - Hi, Just before being diagnosed with CHF I started belching and yawning at the same time while at some activity. It was really outrageous. At the same time I got very tired and it was very confusing to me. It continued for some time and started happening at any time. My doctor said I was inhaling air and to not breath through my mouth. This went on though, for some time after I started medication for CHF, and then sort of died off.
     I personally think it was a side effect of the CHF in its worse stage for me but I guess there is not any published information for a CHF doctor to back them up, or else I'm just full of air like he says. <g> Anyway, that's what happened to me and my take on it. Again, when I do have this happen (very infrequently) I have a snack and take a short nap. the-honey-do@charter.net


Ingrid's December 11 reply to Barbara's December 10, 2002 - Hi all, I too find I burp excessively most of the time. My family are horrified. I keep telling them I can't help it but they don't seem to believe me. I can only say that this has only occurred since I was diagnosed with CHF and started all the meds. My husband says it just confirms his thoughts that I'm full of hot air! ingrid.godfrey2@ntlworld.com


Margaret D's December 11 reply to Jacky's December 11, 2002 - Hi Jacky, I do the same thing! I noticed it even before I was diagnosed with CHF. I yawn frequently while I am using the weight machines, but not when I am doing cardio, which I do first. I do make a conscious effort to breathe in and out with each repetition and don't really feel like I am not getting enough oxygen. Even if I feel great when I'm done though, I still may need a nap after I get home. It's just so much work for my heart to do, I guess. mdavis10@tampabay.rr.com


Chuck H, December 11, 2002 - Hi, This was the article with the most info on LoSo Prep: www.endonurse.com/articles/191feat1.html. They seem to change their articles week to week. dominico493@cs.com
 
Jon's note: Thanks, Chuck!


Suzy Coulter's December 11 reply to Catherine L's December 9, 2002 - Dear Catherine, Jon is right. You are going through the shock that happens after diagnosis. Hang in there, this is a great site. Jon has done a remarkable job. I read you all regularly and post sometimes.
     Just an update on my husband who has CHF and COPD. He spent 11 days in ICU over Thanksgiving with severe heart failure. He had a CO2 buildup to 115, and they diuresed 6 gallons of fluid off him; he lost 26 pounds. While there he went into myoclonic seizures, was placed on a bi-pap, and his meds were totally revamped. At one point they gave him up, but he's like the Phoenix and keeps coming back.
     The point of this is his new meds include Cozaar 25 mg daily and Aldactone 25 mg twice a day. He is also back on digoxin 0.25 mg daily, prednisone at a decreasing dosage, calcitriol (vitamin D), calcium 1000 mg twice a day, albuterol and ipratropium by inhalation, iron 150 mg a day, potassium 10 meq daily, zoloft 100 mg daily, cardura 4 mg daily, and aspirin 81 mg daily.
     Before this hospital stay, Dick had fallen 3 times in the middle of the night. Once he split his eyelid and needed a plastic surgeon, the next time he lacerated the inside of his ear, the next time he just fell on his butt. Each time he was groggy and his mental acuity was poor. His pulse ox has not been above 85% for about a year. He's been on oxygen 24/7 for 2 years.
     How did he get so bad? His heart doctor took him off Coreg and Vasotec because in 7 years he had one good echo showing 55% EF. He actually convinced Dick that his heart was cured and Dick only had to worry about his lung disease. Unfortunately he is the only game in town. His partner attended during the Club Med stay and was so much smarter and attentive. We're switching to him. I'm very proactive about his treatment and meds, and spent nearly every minute with him in the hospital. Nothing was done or administered that I didn't know about. He was too ill and delusional to have any idea what was going on.
     Catherine, hang in there with good doctors. Try not to be afraid. Like Jon said, take it a little at a time. We've been dealing with this for about 14 years and had no inkling that the buildup of CO2 was occurring. So hey, I'll keep you in my prayers. Best to all of you who read this site, Suzy Coulter. sskbc@optonline.net


Jan's December 11 reply to Barbara's December 10, 2002 - Hi, I know what you mean by the burping. My husband was diagnosed with CHF almost a year ago. It seems like he is continually burping. We have asked the doctor and she seems to have no answer. I know he is a mouth breather and has had some stomach problems (ulcers) in the past months. She said it was not due to medication and sometimes he does not eat very much. He says food doesn't taste like it should. Maybe the empty stomach can add to the belching problem. hooty@ix.netcom.com


Bob, December 12, 2002 - Hi, I have been diagnosed with DCM since March, 2000. I was wondering if anyone else has problems with numbness and pain and slight tingling in your left arm? It started in July and I went to the hospital because of that and chest pains. They couldn't find anything. Since then, I have had this problem off and on. Any suggestions? Thanks, Bob. acp@inter-linc.net


John Rice, December 12, 2002 - Hi, After I was first diagnosed with CHF they had me up to 50mg per day of Coreg. My blood pressure was around 70/40 and my pulse was about 30. I thought the end was near but I think the high dosage and aggressive treatment is the reason I am alive today. djhrice@sbcglobal.net


Joyce, December 12, 2002 - Hello all, I just found you. What a wonderful help to know others are dealing with this. My husband has COPD and cardiomyopathy. He was hospitalized twice last month for CHF. He lost 11 pounds of fluid in 4 days. He is on Toprol-XL, asprrin, 0.125mg digoxin (Lanoxin), 80mg Lasix, and 25mg Aldactone (spironolactone). His blood pressure is always around 90/50s.
     He is doing well now, but sleeps all the time. Does this go along with CHF? I am watching his fluid intake and he is weighing himself every day and watching his diet. I just don't understand the sleeping. joycec55@msn.com


Tom S' December 12 reply to Jan's December 11, 2002 - Hi, You are a fortunate wife indeed and if you have any children or pets they are also blessed to have a husband, father, master whose "belches" don't turn into little stinkers like mine. bigheart@muchomail.com


Joyce, December 12, 2002 - Hi, Does any one know if Johns Hopkins has a CHF specialist and has anyone been treated there? joycec55@msn.com
 
Jon's note: Never been there but they have a cardiomyopathy clinic


Lorraine's December 12 reply to Joyce's December 12, 2002 - Hi, My husband sleeps off and on all day, and sleeps fairly well at night also. I think it must be the tiredness and lack of oxygen that causes it. You might mention it to his dcotor though.
     This is a great place to get answers. It helps me just knowing there others sharing your experiences. Good luck and God bless you and your husband. gandlsimpson@msn.com


Tom S' December 12 reply to Bob's December 12, 2002 - Hi, I've read posts in the past that allude to tingling and chest pains, and can only add that for the first 3 or 4 years after onset of my current condition, I suffered similar symptoms. I pretty well figured it was mostly side effects from my medications. Some of the chest pain also was the result of fluid on my lungs which can only be described as an intense burning sensation unlike the heartburn feeling generally associated with heart attacks.
     Ironically, if I took a swig on a cold drink, the burning often would go away. I've also discovered that when it comes to inflicting pain I am my own worst enemy. Very often I will wake up with a pain radiating down my left arm, and numbness the entire length of the extremity, only to realize that I probably had been sleeping on it for an hour or more. Face it, we are more attuned to our bodies once a serious medical condition sets in and it doesn't take much to set off alarm bells in our head.
     I've pretty well learned what is and isn't valid, and have managed to stay vertical and breathing for nearly 7 years, even though I've had similar bouts of what many who post here recount. bigheart@muchomail.com


David's December 12 reply to Joyce's December 12, 2002 - Hi, Jon is right, they have a cardiomyopathy clinic at Hopkins but I have not been there. I go to Hopkins to get my ICD checked. They implanted it there and my cardiologist is associated with Hopkins. They have the clinic on their web site at www.hopkinsmedicine.org/cardiology/heart/. droelecke@aol.com


Carol W, December 12, 2002 - Hello All, I have a new issue that I'm struggling with and perhaps if I share it, it may help some of you. I was diagnosed with cardiomyopathy and CHF this past February. I thought I had pneumonia. I did, but that wasn't the issue. I spent 6 days in the hospital and lost 20 pounds in 5 days. Normally I weigh 128, so you can see I lost a significant part of my weight very rapidly.
     In May, while at a meeting at church, I thought I was having a heart attack. It was biliary colic, a gallbladder attack. Within a week I had the most horrible pain, pancreatitis, caused by my gallbladder. However, on every test my gallbladder looked fine. In the past 6 months I've been subjected to more tests than I would care to tell, but my point is that I face gallbladder surgery after I see a gastroenterologist next month just to have a second opinion for insurance reasons!.
     My cardiologist says it's fine to have the surgery. My reason for writing this is to tell others that rapid weight loss from massive diuretics for CHF can cause other problems. I'm cranky because sometimes certain foods are fine to eat and other times they cause horrible cramps and spending more time in the bathroom than I want to. <g>
     This gallbladder episode was God's way of teaching me how not to worry about my heart. clwelcomb@att.net


Linda Oline's December 12 reply to Shirley V's December 9, 2002 - Hi, I have CHF with an EF of 24%. I had my gallbladder removed the "new" way and got along fine. I then developed a double hernia and had to have that fixed. I was fortunate to get along well again. There is always a risk with any surgery, but if you can have the micro-type it sures helps. Good luck to you! Linda Oline. norvalo@heartland.net


Natalie K's December 12 reply to Joyce's December 12, 2002 - Hi, I don't know about Hopkins but the Baltimore Sun ran an ad today from University of Maryland Heart Center and their web site looks promising, although not centered on CHF. The only Baltimore specialist listed here at The Beat works out of Good Samaritan. Hard to believe with all the excellent health care around Baltimore, there's but one CHF specialist? What is that about? mcnat45@yahoo.com


Jon's December 12 reply to Natalie K's December 12, 2002 - Hi Natalie and everybody, This is a fairly common comment so I probably ought to explain. The CHF specialist listing here at CHFpatients.com only lists those CHF doctors who send me their contact information. There may be 50 CHF specialists in Baltimore but only one has submitted his pratice info to me here, so he is the only one listed.
     If your own CHF doc is not listed here, please feel free to ask him to send me his practice information. He can fill out the form at www.chfpatients.com/docs/docs.htm. It only takes about 3 or 4 minutes to do. Jon.


Amelia's December 13 reply to Joyce's December 12, 2002 - Hi Joyce, Yes, John Hopkins has a wonderful cardiac department. You can get an appointment and information on the Internet. My daughter has had surgery at Hopkins, which was very successful and she was well cared for. I am supposed to make an appointment with the neurosurgeon because my doctor says that for spinal surgery they are the best here in Maryland. John Hopkins is only about one hour from me.
     I don't know what is worse, dealing with pain or fatigue from CHF. I have been having chest pains and yesterday was a very bad day, since I had lots of a-fib off and on. I had an abaltion at the end of September in one area and haven't had any problems till now so my doctor is doing a stress test Wednesday.
     Joyce, the Washington Hospital Center in Washington, DC, has a very good cardiac department also. I think they did the first heart transplant there with the DeBakey team. I may be wrong on that since my memory is shot. Best to all, Amelia. amelias@erols.com


Jack D's December 13 reply to Carol W's December 12, 2002 - Hello Carol, The problems you are having certainly aren't any fun, but to attribute them to the diuretics that were used to reduce the edema which was threatening your life is just plain silly. Worrying about your heart, especially when you have cardiomyopathy, is something you should do. Sure, gallstones are painful but your heart is a very essential organ. Here are a couple of links that you should read so you will understand what is really happening with your body. This one is about bilary colic (the painful passing of gallstones): www.medformation.com/ac/crswa.nsf/wha/wha_bilcol_crs.htm. This one is about pancreatitis (having a gallstone clog up a pancreatic duct): http://digestive.niddk.nih.gov/ddiseases/pubs/pancreatitis/index.htm. maddjak@hotmail.com


Ike, December 14, 2002 - Hi everyone, I was told recently that I have CHF with a EF of 20%. I am taking Aldactone, furosemide, Toprol-XL, and Altace; also Coumadin (warfarin) for a heart valve replacement I had 12 years ago. Since I have been taking all these drugs, I have trouble going to sleep at night. Does anybody else have this problem? Thanks, Ike. saggem5@comcast.net


Vicki, December 14, 2002 - Hi, I was told to go home and eat salt on my meals by a couple of cardiologists. The problem is that I can't remember why. I think one of my blood tests showed I was lacking in something salt provides. Thanks, Vicki. art_vic_payne@yahoo.com.au


Jon's December 14 reply to Vicki's December 14, 2002 - Hi Vicki, Do you have heart failure? Salt provides sodium and many brands of salt also provide iodine. However, if you eat a balanced diet you get the small amount of iodine needed anyway. If you have heart failure, salting food may be a really bad idea, and you should see a heart failure specialist, who may supplement you with needed substances another way. Jon.


Ruthie A, December 14, 2002 - Hi, Merry Christmas everyone! I thought I would speak to a thread passing through these days regarding surgery after being diagnosed with CHF. Three years ago I had major surgery on my spine to repair a blown disk. I had been diagnosed with CHF for only 2 years and was not as well compensated as I am now. Naturally I was very concerned about how my heart would hold up during the operation. This surgery was not elective; it was emergency surgery to correct a life-threatening problem.
     I made sure that I had a long conference with my anesthesiologist about my concerns and he appreciated what I had to say. My recommendation to anyone who is contemplating surgery of any type is to make sure that you discuss your complete medical history with both your surgeon and your anesthesiologist - personally. Do not let them do anything to you until every concern has been addressed, and you are reassured that every precaution will be taken and your heart closely monitored. After that, leave the rest in God's and your doctor's hands. Ruthie A. rlaba51@yahoo.com


Joyce's December 14 reply to Amelia's December 13, 2002 - Hi, Thank you for the encouragement. I hope your stress test went well. I made an appointment for my husband at Johns Hopkins. He goes there in February. His cardiologist is very good and so far is right on track with his treatment from everything I have read. However he is 69 years old and has so many problems that I will feel better if my husband sees a specialist.
     We live outside of Baltimore about 35 mintues from JH Hospital. I feel now that I have found this site (and I thank God for you all), that I have people who understand. I don't like to talk about all this to my children because they worry about us. Thank God that other then high blood pressure I am in pretty good shape and will able to care for him. We were married 48 years Thursday and I sure want to keep him for many more. Thank you all for your help, Joyce. joycec55@msn.com


Kathy, December 14, 2002 - Hi everybody, I just wanted to let people know that sometiems the road to Social Security Disability can be smooth. I first had an inkling that something might be wrong with a routine physical on June 24. I was diagnosed July 17. I was hospitalized in critical condition July 28. My one and only dealing with SSA was September 20, when I had about an hour-long interview with a very nice lady. After that, not a thing till a couple of days ago when she phoned to tell me I was approved for Disability and will get my first check January 8. Thank goodness, since my improvement seems to have slowed and frankly, I am very aware I can't work. kathyh@linkny.com


Clara, December 14, 2002 - Hi and Merry Christmas everyone, Has anyone had experience with multifocal atrial arrhythmias? I would appreciate any information you could share with me regarding your symptoms, medications which helped or didn't help, etc. Thank you all, Clara. ncdossetts@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.

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