The paperwork never ends The Archives
September 1-15, 2000 Archive Index

John 9-1      seek advice on cardio watches
Tom S' 9-1 reply to Jon's 8-30      SSD reviews & more
Jon's 9-1 reply to Tom S' 9-1      SSD reviews & more
Tom B's 9-1 reply to Jon's 8-30      grants, funding for web sites
Jon's 9-1 reply to Tom B's 9-1      grants, funding for web sites
Tom B's 9-1 reply to Jeanette's 8-30      sleep study experience
Bob H 9-1      update, sleep study & more
Jon 9-1      more later, guys
John Len 9-1      SSD
Jeff 9-1      update on Archie, thank you
Stu K 9-1      does anyone else have the InSynch implanted?
Art D 9-1      update, coping, Coreg & more
Ginger's 9-1 reply to John's 9-1      watch-type heart monitors
Jeanette 9-1      thanks & more
Jeanette 9-1      prayer request
Jan S 9-1      SSD & deductions questions, venting, & more
Sara 9-1      blood clots traveling from heart to brain question
Nancy 9-1      what is a cardiolyte stress test?
Helen Otis 9-1      air filter helps me sleep
Brenda H 9-2      SSD review questions, prayer request
Jon's 9-2 reply to Brenda H's 9-2      SSD review time periods
Tonya Dean's 9-2 reply to Jan S' 9-1      seek support group in St. Louis, Missouri area
Thelma's 9-2 reply to Jeanette's 9-1      similar experience, time helps heal
Gus R's 9-2 reply to Sara's 9-1      traveling blood clots, Coumadin & more
Shirley Valdivia's 9-2 reply to Helen Otis' 9-1      air filters, duct work carrying dust & more
LaDon 9-2      tegretol & Minnesota CHF docs questions
Tonya Dean 9-2      seem out of phase, any ideas?
Mary Lou Latini's 9-2 reply to Nancy's 9-1      Cardiolyte stress test info
Taavi's 9-2 reply to LaDon's 9-2      Minnesota CHF specialists
Bill D's 9-2 reply to Sara's 9-1      blood clots, meds, atrial flutter
Bill D's 9-2 reply to LaDon's 9-2      Minnesota CHF docs, tegritol & CHF
Laura 9-3      do I qualify for SSD if self-employed?
Jamie S' 9-3 reply to Jeanette's 9-1      another perspective
Nancy's 9-3 reply to Mary Lou Latini's 9-2      thank you for the Url
Gus R's 9-3 reply to LaDon's 9-2      CHF doctors, tegretol & side effects
Ben B's 9-4 reply to Jon's 9-1      mixed feelings about SSD & more
Jon's 9-4 reply to Ben B's 9-4      mixed feelings about SSD & more
Jan S' 9-4 reply to Tonya Dean's 9-2      St. Louis area CHF support group
LaDon 9-4      thanks to all, docs, tegretol & more
John Len's 9-4 reply to Laura's 9-3      self-employment & SSD
Sara 9-4      thanks to Gus & Bill, & more
Donna Zak 9-4      beta-blocker article
Tom S' 9-4 reply to Laura's 9-3      SSD & self-employment
Gus R's 9-4 reply to Laura's 9-3      SSD & self-employment
Beverly C 9-4      has anyone heard of this blood test for CAD?
Jon 9-4      FAQ page has great new info about travel
John Len's 9-5 reply to Tom S' 9-4      paying SSA taxes while self-employed paid off
Nancy's 9-5 reply to Sara's 9-4      similar problems, Cardiolyte test soon, fingers crossed
Ben B's 9-5 reply to Donna Zak's 9-4      Coreg article is good and bad
Barbara L 9-5      protruding breastbone was "displaced apex"
Kathy 9-5      seek transplant info
Jon's 9-5 reply to Kathy's 9-5      transplant info, don't get in a hurry
Rick M's 9-5 reply to Barbara L's 9-5      what was that again?
Donna Zak's 9-5 reply to Kathy's 9-5      dealing with CHF
Mary H's 9-5 reply to Rick M's 9-5      recipes and good laughs!
Madelyn J 9-5      prayer request
Gus R's 9-5 reply to Jon's 9-4      dealing with feelings of guilt about Disability
Dana J 9-6      need help with low potassium
Jon's 9-6 reply to Dana J's 9-6      have you tried Aldactone?
Jon 9-6      my e-mail address, recipes, transplant pages & more
Frank Smith's 9-6 reply to Gus R's 9-5      enjoyed your comments
Tom S' 9-6 reply to Gus R's 9-5      guilt about SSD
Jon's 9-6 reply to Tom S' 9-6      guilt about SSD
John Len's 9-6 reply to Gus R's 9-5      guilt about SSD
Lynn D 9-6      is cadiac rehab of any use?
Thelma 9-6      thanks for ICD info, seek personal experiences too
Beverly C 9-7      has anyone had Coreg dose raised with very low BP?
Barbara L's 9-7 reply to Thelma's 9-6      ICD experience
Tonya Dean 9-7      how often should echo be done?
Jeanette 9-7      thanks for prayers, update
Krista's 9-7 reply to Lynn D's 9-6      cardiac rehab experience
Gary Nichols 9-7      hot tubs question
Jon's 9-7 reply to Gary Nichols' 9-7      hot tubs and heart failure
Sherrell G's 9-7 reply to Lynn D's 9-6      cardiac rehab experience
Leland Yee's 9-7 reply to Dana J's 9-6      low potassium possibility
John Len 9-7      feeling guilty about SSD & more
Jon 9-7      CHF statistics
Sharon P's 9-7 reply to Lynn D's 9-6      cardiac rehab, ICDs & more
Sharon P's 9-7 reply to Thelma's 9-6      ICDs, EP studies experiences
Ginger 9-8      update on things
Lynn D 9-8      thanks for posts, in study now
Christy P's 9-8 reply to Beverly C's 9-7      raising Coreg dose with low BP experience
Christy P's 9-8 reply to Gary Nichols' 9-7      hot tub with CHF experience
Dana J 9-8      potassium, magnesium, vitamin problems
Jon's 9-8 reply to Dana J's 9-8      diuretics and potassium, magnesium, vitamin problems
Gus R's 9-8 reply to Jon's 9-8      vitally important info, thanks & more
Frank Smith's 9-8 reply to Ginger's 9-8      free Internet access
Frank Smith's 9-8 reply to Jon's 9-8      diuretic use
Jon's 9-8 reply to Frank Smith's 9-8      diuretic use
Jon 9-8      Jeff got a heart transplant!
Jon 9-8      please read the other side today for Kathryn
Ginger's 9-10 reply to Frank Smith's 9-8      free web access
Doug K 9-10      storing grapes for a tasty treat
Brenda H 9-10      seeking healthy heart size numbers
Jon's 9-10 reply to Brenda H's 9-10      upper heart size range
Bev T 9-10      update, seek PWCP numbers & have a prayer request
Helen Otis' 9-10 reply to Beverly C's 9-7      Coreg dose, low BP experience
Bobbye H's 9-10 reply to Beverly C's 9-7      Coreg dose, low BP experience
Ben B's 9-10 reply to Bev T's 9-10      wedge pressures
Karen K 9-10      wedge pressure question
Jon's 9-10 reply to Karen K's 9-10      wedge pressure
Diane P 9-10      what is going on with me?
Jon's 9-10 reply to Diane P's 9-10      some possibilities
Dana J's 9-11 reply to Ginger's 9-10      an Url
Jean C 9-11      grapes, ascites, & how do I deliver this baby?
Jon's 9-11 reply to Jean C's 9-11      dealing with edema - new page up
Lydia Moore 9-11      questions - itchy, warm, red, throbbing fingers
Jon's 9-11 reply to Bev T's 9-10      wedge pressures
Diane P's 9-11 reply to Jon's 9-10      meds, update & more
Rick Crosier 9-11      Mended Hearts is good support group
Tracey 9-11      what can I expect?
Jon 9-12      seeking some patient questions for doc
Ginger's 9-12 reply to Dana's 9-11      thanks for the info & more
Donna Z's 9-12 reply to Tracey's 9-11      statistics, coping with CHF & more
Kat 9-12      coping with life-long illness
Gatha E's 9-12 reply to Jon's 9-11      edema in just one leg - questions & more
Rick M's 9-12 reply to Tracey's 9-11      counting our blessings
Claire 9-12      edema
Frank Smith's 9-12 reply to Tracey's 9-11      hope it helps
Diane P 9-12      medical profession drives me nuts!
Doug K's 9-12 reply to Kat's 9-12      great motto
Sharon P's 9-13 reply to Tracey's 9-11      CHF statistics, mortality & more
Sharon P 9-13      CHF clinic coming to Orange County
Jean C's 9-13 reply to Jon's 9-11      what exactly is wrong with my heart?
Jon's 9-13 reply to Jean C's 9-13      that's one for your doctor
Kat's 9-13 reply to Doug K's 9-12      something to live by
Gaynell F 9-13      is bed rest normal after diagnosis?
Jon's 9-13 reply to Gaynell F's 9-13      bed rest after diagnosis
John Len's 9-13 reply to Gatha E's 9-12      one-leg edema after bypass
Jeanette's 9-13 reply to Tracey's 9-11      look forward always & more
Jon 9-13      downed e-mail, new transplant pages request
Jeanette's 9-13 reply to Rich Crosier's 9-11      seek support group info
Rick M's 9-13 reply to John Len's 9-13      you're in a risky location!
Donna Z's 9-14 reply to Gatha E's 9-12      bypass and leg swelling experience
Mary H's 9-14 reply to Rick M's 9-13      culinary humor
Carl 9-14      MyoVive for CHF & more
John Len's 9-14 reply to Rick M's 9-13      the new Smithfield hams
Anthony 9-14      depression a major problem for me
Jon's 9-14 reply to Anthony's 9-14      try reducing Coreg dose
Jon 9-14      contacting me by e-mail
Jon 9-15      no e-mail yet but still here
Mike Joye's 9-15 reply to Tracey's 9-11      coping with CHF
Donna Z's 9-15 reply to Rick M's 9-14      humor and ham
Phyllis A's 9-15 reply to Tracey's 9-11      update, death in family, coping & more
John Len's 9-15 reply to Mary H's      you wouldn't believe,...
Dana W 9-15      anyone else have fibromyalgia and osteoporosis? & more
Tom B's 9-15 reply to Tony C's 9-14      depression
Brenda H 9-15      how do cm relate to mm in heart size?
Jon's 9-15 reply to Brenda H's 9-15      centimeters and millimeters
Kat 9-15      diet and nutrition in CHF & more
John Len's 9-15 reply to Tony C's 9-14      depression and sleep apnea
Patti D 9-15      EF, meds, transplant questions & more
Jon's 9-15 reply to Patti D's 9-15      my EF experience

John, September 1, 2000 - Hi, I am starting to work out a little in a gym and my wife wanted me to pick up a cardio watch. Does anyone have any suggestions? There are many of these that I have seen. Which ones are good or are they all the same?

Tom S' September 1 reply to Jon's August 30, 2000 - Hi, Curiosity forces me to ask if this will be your first or second SSD review? If it is the first, you might be pleasently surprised. I don't know how much the numbers really mean but I too had a rise in EF to 30 (plus or minus 5 points) but the accompanying doctor's reports clearly stated that it was their learned opinion that I was being "maintained" solely by my medications. It was also stated that there was no possibility of recovery and that I was very limited in activities, etc, etc. That was submitted by my cardiology group who are top rated in the state and probably the nation. As you may remember, after much nail biting and unecessary worry, I passed muster with SSD a second time. Good luck.
     On the supplements, I think as usual what I was attempting to say got lost in the rather one dimensional aspect of text-only communication. What I said and what I meant in my mind apparently were two different things. That's one of the difficulties of this form of communication.

Jon's September 1 reply to Tom S' September 1, 2000 - Hiya Tom, This will be my first review. I hope I am pleasantly surprised but I just can't count on it. Unfortunately, I have gone from 13% to 40% on EF and from transplant level to 20% on mVo2, a huge improvement in numbers. I use the word "unfortunately" because I don't feel any better and I function less well than before. I also can't really count on my doctor being as clear as I would like right now because I believe he is really undecided himself as to whether I can work. It's a subject we are beginning to discuss though, I assure you. <g>
     Don't sweat any misunderstandings in posts. I usually speak rather broadly in my replies to make sure that anyone reading my answer gets all the info they want, rather than just answering a post strictly according to its content; Saves me a lot of e-mail. ;-) Jon.

Tom B's September 1 reply to Jon's August 30, 2000 - Hi, A grant from a non-profit organization should be able to be used for a salary. A grant from such an entity is also non-commercial so there is no "selling out." The non-profits that hop to mind of course are the American Heart Association and the cardiologists' association but I'm sure there must be at least 25 other potentials. There are tons of them. What are groups you've interacted with, have referenced on your site or know about otherwise? Or what non-profits and foundations do users of the site know about? Once you've got a list, there is usually a grant application that must be filled out (I bet you'd really like doing things like that, right?) but maybe you could assign the project to someone. Then, when the application goes in, you point all us out here in the sticks toward the contacts at those organizations and we write, e-mail, phone, and politely pester until they either give the money or otherwise surrender. I think a key element is to involve at least 3-4 groups. It is easier that way for one group to commit, if they know others are as well. Also, their grants may be for different lengths of time so the funding does not dry up all at once a year later. I hope some of this helps.

Jon's September 1 reply to Tom B's September 1, 2000 - Hi Tom, Thanks for the tips. I have talked to a grant recipient here in town who owns her own company and has an NIH grant to put out a CHF patient kit. It was quite a process for her, and very uncertain from year to year. I have been assuming that AHA and the ilk would be useless for this sort of thing, for reasons I won't go into to right now. I may start looking into the rules and regulations concerning funding from private companies and I would like to know where I can get information about how the money can be spent. Can you e-mail me the source of your info? Thanks, Jon.

Tom B's September 1 reply to Jeanette's August 30, 2000 - Hi Jeanette, I would sure second Jon's suggestion for a second opinion on a sleep study as you have described it. I've had one done and while I suppose there are various ways of going at it, mine was halfway enjoyable. They wired me up about 10:00 PM and I was in bed and starting the process of trying to fall asleep. Eventually I did, and they left me alone (but were monitoring me remotely) till I think about 6:00 AM. Then I was up, had breakfast in the hospital cafeteria and did some reading. At about 10:00 AM, 1:00 PM and 3:00 PM I was back in the study center taking monitored naps if I could. By 4:00 PM I was de-wired and sent home. I hope that gives you another perspective. Regards, Tom.

Bob H, September 1, 2000 - Hi folks, I guess it's about time I checked in and let everyone in on what's been happening in this house and also to find out what's going in on the houses which we haven't heard from in awhile. As you all know, I have one of the most decrepit bodies in the world and thought it would never get any worse than it is. Wrong! Y'all know I have a bad ticker and arthritis with severe pain and numerous other maladies. Well, the past couple of months I have been having difficulty sleeping and difficulty breathing. When I did get to sleep I would wake up in the wee hours of the morning, like 4 or 5:00 AM and stay up, not getting much sleep. One doctor told me to go to bed earlier, one said to change my my diet, and on and on.
     Someone mentioned I wasn't getting enough oxygen so my heart wasn't getting enough oxygen. I went to my respiratory doctor, who took care of me when my ARDS was real bad. He also said my heart, body and soul weren't getting enough oxygen but he would like to test me for sleep apnea. Oh, joy! Oh well, why not? I have been tested for everything else; what's a little sleep test? A couple of weeks ago I went into the hospital on a Sunday evening and got all hooked up to a bunch of wires and machines and slept for a little over 4 hours while these nice lady technicians checked me out and made sure I didn't do anything bad while I was asleep.
     What it all boils down to, as I was told last week by the doctor, is that I have severe sleep apnea with abnormal sleep architecture and significant arterial oxygen desaturation. Most of the apnea were central in nature with a lesser number being mixed, and a few being obstructive in nature. From what I understand an apnea is when I stop breathing during my sleep. Over the 4 hour period, I had 190 apneas lasting an average of 23 seconds with a maximum of 46 seconds. Fifteen were obstructive, 123 were central, and 15 were mixed. There were 26 hypoapneas lasting an average of 23 seconds with a maximum of 64 seconds. Well, I guess you get the drift, huh?
     Needless to say I am now sleeping with a CPAP mask and machine during all of my sleeping time, with 2 liters of oxygen also being infused. While the first couple of nights were somewhat uncomfortable, I have slowly gotten used to the CPAP mask, machine and hoses. Last night I slept from 11:15 PM to 6:10 this AM. At least it is helping and I feel very rested and actually feel good. I am not even going to look at any negative aspects and just enjoy the present results.
     Carole is doing well. She is the one who has to listen to these machines running all night so the oxygen concentrator is in the living room and the CPAP machine is on my night stand. She says she doesn't even hear it at all and for that I am grateful. She has gone through enough as it is in these past 41 years. Well, that should bring us up to date with the exception that I had to obtain the services of a lawyer to represent me with the state of Pennsylvania, who wants to settle my Workman's Compensation claim, which I have had for the past 15 years. I will be glad to settle it.
     I really have been remiss in contacting everyone and there is no excuse for it. Being busy with doctors and the VA and now a lawyer sure takes up a lot of time, which could be better spent with family and friends, and my latest hobby of photography with my digital camera. I do still spend a lot of time on the computer but it is one of the activities which keeps me sane, except when AOL bumps me off for no reason. <lol> I hope y'all are doing well and don't hesitate to drop us a line anytime. I am always able to punch out a few e-mails when the urge hits me. With the pain meds keeping me almost pain-free, I am feeling so much better. If I hadn't been such an butthead about it I could have been on these pain meds a long time ago. Contrary to popular belief, I am not in any kind of a stupor, I don't bounce off walls, I don't look and act like I'm drunk, I am not high all the time and I am not a dope "addict." What I am is almost pain-free and for that, I thank God. The pain was just getting to be too much for me and I was making everyone else miserable like me. If you would like to know how good I feel or how I act, don't hesitate to ask my wife. She, of all people, will give you the straight skinny. Folks, take care and God bless you all. Have a good life because life is just too short. Enjoy it! Bob H.

Jon, September 1, 2000 - Hi everyone, More posts will be coming later. I just wore out before I got the ones on hand done. Jon.

John Len, September 1, 2000 - Hi everyone, Jon, I was on SSD for over 10 years before I turned 65 and my review date came and went without them calling me in for a review. When I reached 65 last month they just rolled it over into regular Social Security. I worked as a volunteer a couple of days a week for 4 or 5 hours per day without any questions being raised. As has been stated by others, I could not have held a 8 hour per day job.

Jeff, September 1, 2000 - Howdy, I just wanted to thank everyone who sent messages to me for Archie and are praying for him. He was the one with the LVAD/RVAD. He was not expected to make it through the night a month ago and right now he is setting records, and driving his nurses crazy. He is up walking and they say that with an RVAD you are bedridden until transplant. At least in Iowa City they used to say that. Archie is very alert and doing very well. Thanks again and you all have a great day!

Stu K, September 1, 2000 - Hi, I recently (July 14) had a Medronic InSync ICD defibrillator implanted as part of the MIRACLE study. I was wondering if any of you have had the InSync implanted.

Art D, September 1, 2000 - Hello everyone, Most of you do not know me but I have been around quite some time. I mostly watch and absorb the information. A few years ago I was a Coreg experiment, after my second or third heart attack. I take 50mg Coreg two times per day and there were ups and downs involved in it for me also. When I started, my EF was 18%, then up to 23%, then up to38%, and now after my last test it came back at 61%. My doctor ran a few echo tests and an SAE test as well. His comments today when reviewing them with us was, "For the heart you have left I would say the function is good and for the heart you have left, my prognosis is good, and the portion of the heart you have left has a EF of 61% and for that I'm glad for you."
     I have one more test next week. It is a tilt-table test, where they strap you onto a table and then turn you every which way but loose. I don't think it was me so much that helped my condition it was faith, and good friends, prayers, and a good doctor and proper medications. One good friend in particular always worries and forgets we are sick and we are going to stay sick but we have to make the best out of it. If I stray, I'm told about it by this friend. We should all have one of these special friends to whom we can talk; It really lightens the load and helps. Of course, remember to be there when your special friend needs you too. That's the way it works.
     Everyone has their own ideas on Coreg and other medicines, especially with the insomnia issue floating around. This thing we all have is very complex and I for one do not believe Coreg should be blamed for all of it; maybe a portion but we all have underlying problems that also add to it and a big one is worry. Worry goes undetected in the insomnia issue, and it is the worst one as far as I'm concerned. I understand that when we feel like we do and then top it off with no sleep we start blaming but I'm here to say Coreg has done wonders for me and it's only because I hung in there and went through all the icky stages of the Coreg monster. If we all keep our faith in our God, God will do what is right for us and we must make some of our own well informed decisions ourselves and ask for God's help in making them. My friend was getting worse and I prayed a lot and think God was getting tired of hearing from me so He gave in and helped us both in many areas. I just wish this would go away but it won't and we just get more stuff piled on top of what we already have so we must deal with it and that's where you need a special friend as wonderful as my special friend. It helps to just talk as well.
     Oh yes, as I was feeling better, my extra challange was that I had to put my dog to sleep and he (Charlie) has now left me. I will deal with it but see, it's just that little extra thing thrown at us to keep us strong. Sorry, I didn't want to ramble on but I did want to share some positive Coreg news with all of you. If anyone ever needs an ear to listen, please yell. I'm always around but I just sit back and read. Jon does a wonderful job helping us all and God bless him and all of you as well.
     Ruthie, you're quite the gal and such a inspiration to me, taking everything that's thrown at you. Hang in there. My prayers are coming your way. Thank you, Art DeVriendt.

Ginger's September 1 reply to John's September 1, 2000 - Hi, The best heart rate moniter I have found is called the Polar Beat. They are good and don't cost a lot. Just go to the Polar Beat web site. Hugs and prayers, Ginger.

Jeanette, September 1, 2000 - Hi Guys, Thanks; I am taking Jon's advice and going to make sure they don't try depriving me of sleep. I am glad I am not the only one who thought that was crazy! <g> Thank you all for your time and support. It is very comforting to know you aren't alone. God bless and take care.

Jeanette, September 1, 2000 - Hi Jon and all, I am in need of prayer. Wednesday night a neighbor in my apartment complex had a heart attack and collapsed in my arms. The doctors don't expect her to make it. She is brain damaged from lack of oxygen. I did my best to revive her and the EMS team finally got a pulse and heartbeat after 7 minutes. I know I did everything in my power to help her but I am having a really rough time with this. I am having trouble sleeping more now than just usual and can't seem to get the accident off my mind. I close my eyes and all I see is her collapsing. I have talked to God and am praying but my mind is so screwed up about this. Please pray that God will help me overcome this tragedy and ease my mind that I did everything I could have and that I can sleep soon. Thank you all, Jeanette.

Jan S, September 1, 2000 - Hi, I wish the weather here in Missouri would get in touch with the fact that today is September 1. It is supposed to be 100° today again. My post today is about 2 items, not weather-related. I am on SSD and fortunately have insurance disability funds as well. The amount totals 60% of my before-disability income. My husband is 66 and planned on retiring last year but now he still works 4 days a week while drawing SS. My first question has to do with income tax deductions. I have heard I can deduct travel expenses for driving to volunteer situations I am involved with. Is this true and at what rate? Cents per mile? Another friend suggested that if I volunteer at something that uses my pre-disability skills I can claim hours of what my income would be for the time I give in volunteering. I was a paid hospital chaplain for 17 years and I am considering giving some hours to a Cancer Center 30 miles from home as a volunteer chaplain. Anyone with information, I would appreciate hearing from you.
     My other issue is ventilating my grief issues. Yesterday, my former place of employment gave me a very nice "farewell reception." I had gone from Director of the Department of Chaplaincy to medical leave of absence to substitute over a 2-year period. When I took on substitute status I was never called to work and after 6 months they called me in and said my services were no longer needed and I was told by the Human Resources Director that the main reason I was being dropped as an employee was so they could "clean up the records" in preparation for JCAHO site review! What a slap in the face! I asked for the reception because I earned it. It is a custom of the hospital to have receptions for any employee there over 10 years. I needed formal closure for myself and family and coworkers. I am a very strong Romans 8:28 person even though it takes me awhile to get there! Thanks for listening, Jan.

Sara, September 1, 2000 - Hi everyone, I hope everyone will have a restful and happy holiday weekend. My question is, "Hhas anyone had blood clots thrown off from their heart to their brain?" I understand high blood pressure could cause this but mine is not that high for concern and yet these old clots keep finding their way to my brain, and they now cause TIA (transit ischemic attacks), but thanks to God, no strokes yet. Best to all, Sara.

Nancy, September 1, 2000 - Hi, I am new here, with CHF. I will have a stress test and echo on Wednesday, September 6. The stress test is with an isotope called Cardiolite. What is this? Thank you, Nancy.

Helen Otis, September 1, 2000 - Hi all, I just wanted to let you know about something Patrick bought for me that has changed my life. On Monday he bought me a Hepatech air filter. I have a floor model in the living room right behind the futon sofa where I sit, and a desk model on my bookcase in my bedroom. I slept almost through the night on Monday, only waking once, with very little drainage from my sinuses. Best of all I woke up with energy on Tuesday morning. Here it is Friday night and I still feel good - not great - but not like someone tried to suck the life out of me. If possible I would recommed everyone buy at least one of these. Gotta go do homework now. Take care all, Helen Otis, age 26, EF 25-30%.

Brenda H, September 2, 2000 - Hi, I was wondering how often SSD does reviews. I'd never heard of that and have been on it over a year. My numbers have gone up too. I've been feeling very blue lately and could use any extra prayers. My parents went back to Arizona. There were here for 3 months and we are very close. Having marital struggles doesn't help either. Thanks for your prayers, Brenda H.

Jon's September 2 reply to Brenda H's September 2, 2000 - Hi Brenda, SSA does SSD reviews on a schedule, supposedly. You can find it here. If medical improvement is "expected," your case will normally be reviewed within 6 to 18 months. If medical improvement is "possible," your case will normally be reviewed no sooner than 3 years. If medical improvement is "not expected," your case may be reviewed no sooner than 7 years. Jon.

Tonya Dean's September 2 reply to Jan S' September 1, 2000 - Hi Jan, Do you know of any CHF support groups that meet in Missouri, especially in the St. Louis area? Thanks, Tonya.

Thelma's September 2 reply to Jeanette's September 1, 2000 - Dear Jeanette, I am so sorry to hear what you have gone through with your neighbor. I will pray for her recovery. My comment is to let you know I went through a similar experience with my mother, whom I watched die of an aortic aneurysm. I felt so helpless being a nurse and not being able to save her. In the days following her death, I relived the event over and over, so much I thought I was going out of my mind. I finally sought some counselling and was relieved to know this is common after witnessing a traumatic event. It is a symptom of post-traumatic stress syndrome. Just know that this will pass and the events will lessen over time. Be thankful you were there for her and did everything you could, Thelma.

Gus R's September 2 reply to Sara's September 1, 2000 - Hi Sara, I'm not an expert on anything, but that never stops me from sharing my thoughts. ;-) I always hope that if I'm too far off in my babbling, someone will correct me. Either way, just take it for what it's worth and always follow your dox advice and your own mind with your health problems.
     I haven't thrown any clots that I know of but they are one of my main concerns. You didn't mention whether you had a-fib or not, but it can cause clots to form in the heart and anytime there are clots, there's always the chance they will travel. If your dox could find the cause of your clots and eliminate the cause, that would be the way to go. If that can't be done, I would suggest you consider Coumadin therapy. If you are on Coumadin now, I would suggest an increase in your dose. Almost everyone has a different idea about the INR or PT levels to try to maintain for the best protection with the least possible adverse effects but if one has moving clots, I think it's too low. There have been some anti-Coumadin posts here in the past but I have taken Coumadin since the fall of 1992, and it has not caused any problems that I am aware of. Best wishes, Gus R.

Shirley Valdivia's September 2 reply to Helen Otis' September 1, 2000 - Hi Helen, I have a Hepa air cleaner in my bedroom also. It makes all the difference in the world sleeping under one of these. I have been using one for about 3 years and have even invested in a another new one which is bigger and better than my old one. I also put cheesecloth over all my vents in my house. You would be surprised at all the dust and dirt that comes through these vents. One of my doctors told me about the air cleaners and cheesecloth. I would recommend that anyone that has allergies and asthma would benefit from doing this.

LaDon, September 2, 2000 - Hi, I'm new to all of this, having found out that I have CHF about 3 weeks ago. I have been reading this web site and have enjoyed it and found it very helpful. I have a couple of questions. First, why are there no CHF specialists in Minnesota? Second question, has anyone heard that the drug Tegretol can cause CHF? A friend of mine who works in the medical field e-mailed me that in a very small number of cases this can happen. I would like to know if anyone else has heard of this before I go back to the doctor next week. I would love to get off this drug. I am not much of a conversationlist but I am listening. Keep up the good work and God bless.

Tonya Dean, September 2, 2000 - Hi, Lately I have been feeling out of touch with myself. My memory no longer seems to exist and I misplace everything. I also feel so overwhelmed with life in general. I never can seem to get any work done. As soon as I finish one project, ten more seem to find my presence. Is this maybe from my meds? The dosages haven't been changed since January. I take 12.5mg Coreg twice a day, 25mg Captopril 3 times a day, digoxin and Lasix. Any help would be appreciated. Thanks! And Jon, keep up the excellent work! Tonya.

Mary Lou Latini's September 2 reply to Nancy's September 1, 2000 - Hi Nancy, You can find information on Cardiolite and the test you are about to here. Take care, all. Mary Lou.

Taavi's September 2 reply to LaDon's September 2, 2000 - Hi LaDon, There are CHF specialists in Minnesota. What area are are you looking in? There is Dr. Leslie Miller at the Fairview-University Medical Center in Minneapolis, specialists at FUMC, at Abbott-Northwest (also in Minneapolis), the Mayo clinic at Rochester, and at couple of other clinics that I can't remember offhand in St. Paul and Edina. The pickings outstate are slimmer. If you'd like me to dig up more specific info, let me know. Taavi.

Bill D's September 2 reply to Sara's September 1, 2000 - Hi Sara, Are you taking aspirin or Coumadin? I'd be worried about the TIAs. Yes, your heart can throw off blood clots especially if your left atrium is out of whack. Do you have atrial flutter? You can feel it as a seperate beat on the lower left side of your chest. The blood seems to pool there, causing clots. They cured me by shocking me. I wasn't awake for the shock. They gave me lala juice. <g> Bill D.

Bill D's September 2 reply to LaDon's September 2, 2000 - Hey LaDon, There are at least 3 clinics with heart failure specialists in Minnesota. Go to Please don't tell me that tegritol causes CHF! I've been taking the stuff for years, even before I had my first heart attack! Where did you hear that? Bill D.

Laura, September 3, 2000 - Hi, Does anyone have any info on whether or not you are eligible for Disability if you are and have been self-employed? I have never gotten or looked into Disability insurance in the past because of course I never thought I would get sick like this! I am 45 years old, had always been in good health. I have good medical coverage but that's it. Thanks for any info, Laura.

Jamie's September 3 reply to Jeanette's September 1, 2000 - Hello Jeanette, I feel bad that you had to go through that, but at least she was with you and not at home alone. You say you did everything you could and you are right. It can take trained professionals 20 minutes to bring a pulse back and there are times when they don't get the pulse back. If you can, I would go and visit her in the hospital and talk to her. She may have a lapse of memory and want you to tell her what happened, and that may help you. Let her know what you did. If you feel like you were lacking in whatever, read a manual on CPR or take (if possible) a CPR class. I think that if you see her and talk to her maybe the event won't be so clear in your head. It is normal, by the way, to see it over again in your mind. It's an extraordinary event that doesn't happen to you every day. I would take comfort in the fact that she was with you and not alone or someplace where she could have been killed or injured someone else (like a car). You were where you needed to be and she was where she needed to be. My best to you and her, and I hope this helps. Jamie.

Nancy's September 3 reply to Mary Lou Latini's September 2, 2000 - Hi mary Lou, and thank you for the Cardiolite Url. It was very helpful. It helped ease my mind greatly. Thanks for your kindness, Nancy.

Gus R's September 3 reply to LaDon's September 2, 2000 - Hi LaDon, Taavi and Bill are right about CHF specialists in Minnesota. You might have been misled by none being listed on Jon's Find a Heart Failure Specialist page. The dox are a rather new item here and what is listed is just a fraction of what will eventually be there. Jon had just started listing Dox when he had to move his entire site to another domain, so the doc list had to be delayed. Another delaying factor is that he asked for help finding dox and since his labor pool consists of CHFers, some of us are a little slow getting info to him.
     I looked up Tegretol in Medscape's drug info and was surprised at it's adverse effects list. They break adverse effects into 2 categories: incidence more frequent, and incidence less frequent. Tegretol's more frequent list is about average but the less frequent list is about as long as I've ever seen and includes cardiac arrhythmias, cardiovascular effects, and congestive heart failure. Tegretol may be a med to give some serious thought to but one should remember that in many drug trials and tests, the old sugar pill (placebo) has a pretty hairy list of adverse effects too. Best wishes, Gus R.

Ben B's September 4 reply to Jon's September 1, 2000 - Hi, I thought I would address the SSD versus working issue from a little different perspective. I seem to have the opposite dilemna to a lot of posters. My numbers are relentlessly lousy (EF 20 to 25% at last measurement). I have been on SSD for almost 2 years now. Except for about 8 months, I haven't felt up to snuff but haven't felt horribe either. Therefore, although I qualify for SSD, there are times I feel I am ripping them off. My doctor, who initially recommended the disability, says he has people with EFs of 10 to 15% working and people with EFs of 40 to 50% on disability, so to a large extent it is up to me. Still, I am fearful that I will take a big decline if I start full-time. I have kept busy with graduate school and tutoring at the JC, which I initially accepted a low wage for but now do voluntarily. I also do other volunteer work, including Meals on Wheels, which at first my family thought I would be receiving not delivering. I am active around 35 hours a week, still I know this is nothing compared to the stress of dealing with a boss and deadlines. I don't know if my heart could hack all that again when I think back on it. So like I said, I am still working this stuff out.

Jon's September 4 reply to Ben B's September 4, 2000 - Hi Ben, Been there. ;-) I don't feel guilty any more about receiving SSD even though my numbers are much better, because I have come to realize over time that I simply could not have held down a job for more than 2 weeks then and I can't now either. Sooner or later, you get in a situation that makes this clear to you. Jon.

Jan's September 4 reply to Tonya Dean's September 2, 2000 - Hi, I live about 120 miles west of St Louis. I don't know of any CHF groups in the St Louis area but I will see my electrophysiologist on September 18 and I'll seek information about support groups at that time. In the meantime, maybe someone else at this site knows and can share the information with both of us. Jan.

LaDon, September 4, 2000 - Hi, Thanks to all who replied so quickly. I had only gone on what information there was here and in the local yellow pages. I'm surprised CHF specialists aren't listed as such in the yellow pages. The team of cardiolgists I am seeing does recommend getting second opinions, now I know where to go. Thanks. :-)
     We learned about the possible problem with tegretol from a very good friend who was the charge nurse in a CCU unit for many years. She said this was rare but advised me to discuss it with my doctor anyway.
     Jon, check out some of the larger Christian organizations in the area and across the nation. Many set aside money for local missions that this web site should qualify for. Also check out local service groups such as Lions or the American Legion. In the Twin Cities area these organizations are required by law to donate a very large percentage of the funds raised from charitable gambling to non-profit groups and causes. Good luck and keep the faith. God bless.
Jon's note: Everyone seeking a CHF doc, remember to check the doctor finders at my Links page!

John Len's September 4 reply to Laura's September 3, 2000 - Hi Laura, I was a self-employed building contractor with my own company when I went out on disability in 1989 or 1990. Time goes fast when you're having fun. I put in for disability because of diabeties and blocked arteries, I was accepted so fast I had to shut down my business in record time. Of course you cannot keep operating a business and collect. John.

Sara, September 4, 2000 - Hi Gus and Bill, Thanks for the info about blood clots. I had been on Coumadin for leg clots years ago. I have cardiomyopathy with arrhythmia. I had CHF last January (a year ago). In the past few years, I had TIAs and am on 150mg persantine and an aspirin daily. In April my new cardiologist took me off amiodarone and said I do not need to take it any more because my EF was up from 28 to 55 despite my SOB and palpitations so now I am dealing with more TIAs. I had been on Vasotec, Lasix, more blood pressure meds, Lanoxin and amiodarone. Best to all, Sara.

Donna Zak, September 4, 2000 - Happy Labor Day everyone, There was an interesting article on beta-blockers in this morning's Philadelphia Inquirer. You can read it by going to Have a great holiday! Donna.

Tom S' September 4 reply to Laura's September 3, 2000 - Hi Laura, There is self employed, then there is "self employed." If you have been self-employed and have been paying into the Social Security system via the self-employment tax, then you are indeed eligible for SSD just like anyone else who has been paying into the system. The 15.3% tax may seem steep but I am eternally grateful that I went that route and filed tax forms on every dime I earned through self-employment for the 15 years I was in that category. There are those who choose to avoid the tax by not reporting income. Ultimately they become the losers because not only is the amount of an SSD award based on earnings and payments into the system, but it is also the basis for regular SSI payments.

Gus R's September 4 reply to Laura's September 3, 2000 - Hi Laura, Jon has Social Security Disability information and links here. Here's my inexpert answer: Qualifying for Social Security Disability Insurance (SSDI) benefits on your own work record will depend on whether or not you have paid Social Security taxes on yourself. If you did not, you may be able to qualify on the work record of a parent, or if you are a widow, on the work record of a deceased spouse. SSA Publication Number 64-030 says,

"To be eligible for SSDI the worker must have worked and paid Social Security taxes for enough years to be covered under Social Security insurance; some of the taxes must have been paid in recent years; and you must be:
  1. The worker or the worker's adult child or widow(er)
  2. Considered medically disabled and
  3. Not working, or working but earning less than the substantial gainful activity (SGA) level (go to page 10)."

There is also the Supplemental Security Income Program (SSI). I don't think there is any work record required but one must have very few assets to qualify for SSI. By the way, qualify, as used in this post means passing the first of any number of hurdles. ;-) Best wishes, Gus R.

Beverly C, September 4, 2000 - Hi Everybody, I wonder if anyone else has had their LPa tested while having blood work. What I understand is that it is a fatty molecule that can be tested like cholesterol and triglycerides, that shows your chances of having CAD. My dad had early CAD and I always watched my cholesterol. It was never over 200 so I thought I was okay, and with my triglyerides too. Well, some of you know that I found out in January of 2000 that I have terrible CAD with 2 major blockages in my heart and a bad carotid artery blockage. My cardiologist sent my blood to California to have a very refined test done and also have different tests done that they have found show possible CAD. My results showed that my LPa was almost 3 times higher than the normal range. I understand that you do not want to have it higher than 30 and mine came back at 89.7! If they had tested me for this earlier, I might have found out about my blockages before I had the big heart attack. I looked it up on the Internet and found that it is also a cancer marker for ovarian cancer. Have any of you had this test done?

Jon, September 4, 2000 - Hi everyone, Thanks to Walter K's wife Hedy, we have some great new info on travel. It turns out she is a travel agent and knows her stuff, so she was kind enough to agree to write an article for us. I added it to the CHF FAQ page on flying. You can read it here. Jon.

John Len's September 5 reply to Tom S' September 4, 2000 - Hi, I agree with Tom in that if I had not been paying the SSA taxes on my full income as a self-employed contractor I would have been in deep trouble without the Disability payments now coming in.

Nancy's September 5 reply to Sara's September 4, 2000 - Dear Sara, I also am on Coumadin for leg clots for the past 10 years. I have had venus stasis ulcers on my left leg. I have had 2 DVTs in my left leg and now I have very poor circulation in my legs. For the last 3 years I have had CHF but only this year has it slowed me down. I also have an enlarged heart. I will have a Cardiolyte stress test tomorrow. I hope something will help me soon. Take care, Nancy.

Ben B's September 5 reply to Donna Zak's September 4, 2000 - Hi Donna, Thanks for the recommnedation. This was a very good article, however it does add to my dismay about the medical and medical journalistic community a bit. Consider this quote about Coreg, based on a real, scientific study, taken from the article:
     "Coreg by maker SmithKline Beecham P.L.C., cut death rates by more than one-third in an international study of 2,200 patients with the most advanced stage of heart failure - people like the former transplant candidate. (Over 29 months, 11% of patients on carvedilol died compared with 18.5% on placebo.)" Promising because these are the sickest patients with death rates less than 5% annually! However read a couple paragraphs down and we get the old tired quote: "What is worse, the prognosis has improved little over the last 30 years. About 70% of patients die within 5 years."
     Where do they get this junk? There is no citation, no study, and it is contradicted by a real study mentioned in the same article. I don't get it. Still, the article was very good because it points out that non-compliance (mainly by doctors) is a major problem.

Barbara L, September 5, 2000 - Hi, Lynn, Thank you for the information on raised breastbones. It finally has a name: displaced apex. Have a wonderful day and God bless.

Kathy, September 5, 2000 - Hi everyone, I am wondering if anyone knows the average life span for a person after receiving a heart transplant? I am only 41 years old and have been diagnosed with CHF for a little over a year. My quality of life wasn't bad but seems to be going downhill. I also have 2 children, ages 13 and 15. I would like to see them get a little older. I need some answers and don;t knwo where to go. Thanks, Kathy.

Kathy, September 5, 2000 - Hi Kathy, I haven't checked the actual stats in quite awhile although I'll be up to my eyeballs in heart transplant stuff as I move the transplant pages next week. You can find tons of info via the links there, though. Don't get in too big a hurry for that new heart. CHF is more treatable now than ever before. Most non-CHF specialist doctors are in waaay too big a hurry to push us into a transplant. Jon.

Rick M's September 5 reply to Barbara L's September 5, 2000 - Raised breastbones? I thought she said Braised Breastbones. I was all ready for a smashing new recipe!

Donna Zak's September 5 reply to Kathy's September 5, 2000 - Hi Kathy, When I was diagnosed, my CHF specialist put it to me this way: 75% of people live 5 years or more on meds and 70% of people live 5 years or more with a transplant, so let's see how you do on meds first. I totally have to agree with her and with Jon. I look at it this way: the longer you can wait, the more advances they will have in medicine. Who knows? In a few years they may be inplanting the Heartmate 2 instead of a transplant and then we would not need anti-rejection drugs. Hopefully, I can go 10 years or more if I watch myself and today with all the new meds, who knows how long we can go the way we are? I will go for a transplant if and when needed but I'm in no great hurry to get one. I totally agree with Jon. CHF is way more treatable than ever before. Just remember to take your meds, watch your diet and exercise, and yes I said exercise. Take care of yourself. My doctor said the biggest mistake people make is not watching their diet or fluid intake and not taking their meds properly. Donna.

Mary H's September 5 reply to Rick M's September 5, 2000 - Hi Rick, Braised Breastbones? Rick, we have been talking about memory going and even feeling fatigue. However, I don't recall anyone mentioning anything about their eyesight failing. You made my day with a smashing good comment! Imagine going to Kroger and asking for two pounds of fresh breastbones (without skin). Julia Child scoot over, Rick's in the kitchen. I'm still chuckling, oops, I just snorted. Mary H.

Madelyn J, September 5, 2000 - Hi, Please say a prayer for my friend Bob. He moved his family back here from Hong Kong this summer due to his weakening heart and possible need for a transplant. He's had CHF due to viral CM for 4 years. Since their move here, he has been hospitalized a few times to get rid of fluid, have tests and get a pacemaker/defibrillator implanted. Last week, a right-heart cath found alarming pressures and he will have an LVAD put in this week. All this is with no health insurance and he is only 41 years old with 2 small children. He has a great attitude and will be "financially eligible" for the transplant next year. However, everything is happening faster than his family and friends expected. If anyone wants to send me an e-mail for him, I will print it out and see that he gets it. Thank you.

Gus R's September 5 reply to Jon's September 4, 2000 - Hi All, I think the shame-guilt-worthless feelings hit me harder than CHF did. One day I had my little life with it's hopes and dreams, and when I left the hospital 2 weeks later they were all gone. It just went downhill from there. I went from being the "typical" male who would rather wander around lost for hours than ask a stranger for directions, to someone who had to practically beg to get the Social Security benefits he had paid towards each and every week for the past 28 years. A real bummer! I try not to have any guilt feelings about becoming what I am now, but those feelings are like dandelions; It's very hard to eliminate the deep roots and if you finally do succeed, here come some new seeds on the next breeze. ;-) Best wishes to all, Gus R.

Dana J, September 6, 2000 - Hi all, Does anyone have any suggestions on how to get low potassium under control? I'm taking 80 mEq potassium daily and my potassium level is currently at 2.5 and dropping. My cardologist tried taking me off of Lasix and Zaroxolyn and I blew up like a balloon and didn't "go" for 48 hours. As soon as I started taking them again, my numbers started dropping. I'm up from 2.2 but if I can't get this under control I'm in for another lovely vacation at the local hospital. Any suggestions would be appreciated. Thanks!

Jon's September 6 reply to Dana J's September 6, 2000 - Hi Dana, Have you tried taking Aldactone? It is potassium-sparing and has allowed me to quit taking my potassium (I get blood work tomorrow). Jon.

Jon, September 6, 2000 - Hi everyone, If you still send me e-mail at, please switch to The misterbooboo address is temporarily my wife's e-mail address. Geocities screwed us big-time and I had to move her site to my server (it's now here) and am setting up a new e-mail address for her with a domain name but it isn't ready yet. Please note that she seeks patient feedback on one of her pages. She's a Director of Patient Accounts at one of our area's largest, busiest urban hospitals.
     Also, please send me your favorite low sodium recipes! If you want to e-mail them to me that's cool, but there is also a form on the Let's Cook page now. I can use MasterCook format if that's your favorite.
     Anyone who has had a heart transplant, please let me know if you would like your story told on my transplant pages. I will be upgrading/updating/moving them to the new server soon (last section of my site to move - yes!) and would love to add some more real-life experiences to the mix. It would help a lot of people! Thanks, Jon.

Frank Smith's September 6 reply to Gus R's September 5 , 2000 - Hi, Life really can be diccouraging, however your prose/poetry influence should not be a stranger at Jon's Place. Thank you. Later, Frank Smith.

Tom S' September 6 reply to Gus R's September 5 , 2000 - Hey Gus, I wonder if Ross Perot feels any guilt as he sits in one of his many gilded mansions and lives in the lap of luxury, all on the backs of the US taxpayer? I hardly think that any contractor for the US government has one second of guilt as they overcharge for every little nut and bolt they sell to it. Remember the $600 hammers and $1,000 toilet seats. Take the money and run. At least you paid into the system and didn't have to cheat the government to get it like so many others do without so much as batting an eye. I for one refuse to feel guilty about being on SSD. It's our safety net that we have paid for. Too bad it doesn't come complete with a golf course home and a limousine, like government contractors have.

Jon's September 6 reply to Tom S' September 6, 2000 - Hi Tom, Gus certainly doesn't need me to speak for him, but neither of us said that we should feel guilty, just that we do. <g> We like earning our own way and it will always bother us to some degree that we are no longer able to do so. Having good days doesn't help the feeling that maybe - just maybe - we could make some money somehow, even though experience says otherwise. We know better, but the thought nags. Jon.

John Len's September 6 reply to Gus R's September 5, 2000 - Hi Gus, Look at the bright side. Think of all the folks you are making proud because their contributions are going towards making our life more comfortable. Of course they visualize us as loafing around Miami on the fantail of our yacht, sipping mint julips and living the good life. ;-) John.

Lynn D, September 6, 2000 - Hi everyone, What good is cardiac rehab? Why can't I get back to my walking routine myself? Do I really need to pay someone to watch me walk? Thanks for the info.

Thelma, September 6, 2000 - Dear Jon, I want to thank you personally for your excellent info available on this site for ICDs. I just finished reading all that was available. The reason being that I just had a visit with my cardiologist today and from my holter monitor he noted a ventricular rhythm disturbance. It looks like I'm heading toward an EP study and possible AICD. I'm scared to death about this and would love to hear from anyone who has experienced these procedures. It just seems this IDCM nightmare just keeps continuing. Of course I am blessed that I am continuing versus the alternative. I'm just having a bad day and am looking for support. Thelma.

Beverly C, September 7, 2000 - Hi, I went to the doc today, anticipating that they would increase my dosage of Coreg from 6.25 to 12.5mg. My blood pressure was 90/60 and pulse was 60. I had not had any more SOB than normal and no dizziness the last 2½ weeks, since I started at 6.25mg. They said that due to these readings they wouldn't raise my dose. The nurse said that if we can't raise the dosage, they are showing some improvements even with 6.25mg. Does anyone else have any experience with raising their dose with a blood pressure and pulse like mine? Thanks, Beverly C.

Barbara's September 7 reply to Thelma's September 6, 2000 - Hi, I went through the study with wearing a holter monitor for 2 or 3 weeks. It is so frightening when the heart gets out of control. I finally had what I call an episode. I reported this episode at about 10:00 and by 11:00 my cardiologist called my house and wanted to see me as soon as he could. He introduced me to an electrical doctor. An ICD does not stop these episodes from happening, but does stop them from continuing. I have been lucky and only one time has my ICD fired, but shouldn't have. I must say at first it will cause you to go into fear and depression. Eventually, if you are emotionally strong, you can cope and not be as fearful. I have twice gone into atrial fibrillation since the device has been put in. My doctor put me under sedation and twice fired my ICD to put me back in rhythm. I was in the hospital for just a few hours and then was released. I hope this will give you some information about the device. I have come to like that I have it. God bless and I will be thinking of you.

Tonya Dean, September 7, 2000 - Hi, I go to my cardiologist in December for the "one year since diagnosis" checkup. Should I be scheduled for another echocardiogram at that time? Right now all I am scheduled for is an office visit but I keep hearing of everyone's EF at one year. My EF at my 6 month echo was 45-50%, so I was curious about that. Any info would be appreciated. Thanks, Tonya.

Jeanette, September 7, 2000 - Hi, I haven't posted in a few days or read any until today and I just wanted to say thanks for the input on my prayer request. Unfortunately, my neighbor never regained conciousness and was taken off life support Friday evening. The funeral was yesterday. I am doing a little better but I guess this will pass. Thanks for everything. I am continuing to pray for all of you as well. Jeanette.

Krista's September 7 reply to Lynn D's September 6, 2000 - Hi Lynn, I am currently about halfway through a Phase II Cardiac Rehab program. I was diagnosed with CHF last December and was inactive for several months before my CHF really got "under control" after changing doctors and several medication changes. Since I had been inactive for so long, it was difficult to know how much of my tiredness was caused by my CHF and how much was due to being "out of shape."
     I also recently received a biventricular pacemaker, so the Phase II allows my heart rate and such to be monitored while I am exercising. In addition, I do several kinds of exercises for both the legs and arms, such as treadmill, weights, bike, and arm bike. This provides benefits that walking alone cannot provide. The place I go also has a Phase III program where the participants are not monitored directly but an RN is immediately available in case something happens. Also, it provides more structure as to the type and level of exercises to be done. This may help you since you seem to be having a difficult time getting back in the walking routine. Some people just need a scheduled and structured program to motivate them. In addition, it's a great way to meet people with similar conditions, and you can be there to encourage one another, which always makes things easier. I hope this was of some help, Krista.

Gary Nichols, September 7, 2000 - Hi, I have a question. I have heart failure following a heart attack 5 years ago followed by angioplasty, and then bypass surgery 7 weeks ago. We have a hot tub and I am getting different advice from different doctors on the use of hot tubs by heart failure paitents. Some say it is okay while some advise against it. I would appreciate input from others. Thanks, Gary.

Jon's September 7 reply to Gary Nichols' September 7, 2000 - Hi Gary, The main issue is blood pressure. Some doctors believe that continued immersion in hot water will cause your blood pressure to drop to a dangerous level, especially considering that heart failure meds already keep your BP low. Other doctors believe that such a drop does happen but does not reach dangerous levels. Your call. Jon.

Sherrell G's September 7 reply to Lynn D's September 6, 2000 - Hi, Cardiac rehab was a good experience for me. The transplant doctor recommended rehab to me, not that my heart was going to improve, but so that the rest of my body might get into better shape. That was in 1996. With my history of fibrillation and having an ICD, it was comforting to me that the rehab nurses had me hooked to a monitor and were closely watching my heart pattern, checking my blood pressure, and making sure I was not experiencing any pain, etc.
     I went for 9 months, finally reaching my goal of one mile in 30 minutes. I was less short of breath on exertion, lost about 20 pounds, and wasn't as scared when my pulse rate elevated. I was really confident I could continue at home but that is easier said than done. It must be a priority and you must be really motivated. At first I did well but then I would say I needed to do this or go somewhere, so the exercise was pushed aside. My husband would only let me walk when he was home (in case I had a problem). Slowly I just stopped the treadmill workout, gained 15 pounds back, and gave out more quickly.
     Recently, I realized again the importance keeping my body in the best shape possible so I started back to cardiac rehab. The first session I only could walk 10 minutes at one mile an hour but slowly I have increased to 25 minutes at 1.3 miles per hour. Also, there have been several days the monitor picked up strange rhythm problems that needed addressing by my doctor. If I had been at home, I could have been in trouble. Everyone's case is different, but for me the nurse and monitor help my peace of mind and serve as good motivators.

Leland Yee's September 7 reply to Dana J's September 6, 2000 - Hi Dana, What type of potassium are you using? The tablets are enteric coated, to prevent irritated stomach lining. Perhaps your system cannot break down the film layering of the tablet. In this case, you may have to ask your MD about using KCl elixir, which must be mixed with other juices, just to hide its horrible taste. Good luck to you, Leland.

John Lee, September 7, 2000 - Hi, I for one enjoyed working and certainly miss it, however I guess I am a fatalist. I accept the inescapable. I cannot hold down a full-time job. I paid into the system since about 1950 and do not feel guilty about collecting what I'm entitled to. One thing that does gripe me was the fact that Unkie Sam kept telling us it was our money going into our account and then it was a disallusionment to find out when I started putting in for my money that it was considered nothing more than another tax. They keep telling us to save for retirement. Yeah, right. Most of my working life, my money was just enough to live on after paying local, state and federal taxes, and toss on top of that hidden taxes. I didn't live a bad life but in the lower middle of society there simply was not enough to stretch but so far. One good thing was that mother impressed on us when we were kids to own, not rent, our house. Doctors got their share too as the kiddies were growing up.

Jon, September 7, 2000 - Hi everyone, I thought I'd drop a word or ten about CHF statistics. It is common knowledge in the medical community that doctors do not treat most CHFers properly, according to the official treatment guidelines. This is supported by survey studies where a doctor's answers to a survey on heart failure treatment are compared to patient charts to see how his perception of his treatment differs from reality.
     In reality, 80% of doctors do not treat CHF properly. Naturally, this leads to increased mortality, meaning doctors kill people by not following the guidelines set out for them by their fellows who are experts on CHF. This skews statistics right off the bat. By coming here and learning how to manage your doctor's treatment of your CHF, you beat the statistics by a wide margin because you do get proper treatment.
     The statistics reporters quote are often from stats released in 1997, which reflect 1993 levels of CHF medical treatment, meaning no beta-blockers, heavy use of inotropes (which increased mortality the way they were then used), ACE inhibitors were "new," and patients were told not to exercise. Small wonder the stats from that time period don't look too good, huh? <g>
     What I am getting at is that statistics are not valid unless they are both up to the minute and specifically targeting the subset of CHF patients into which you fall yourself, so don't worry about them too much. A study that included mainly elderly patients may not apply to me. A study that included mostly patients with a-fib may not apply to patients without a-fib, and so on, yet all these groups are lumped together under the title "CHF" and counted as if they all had the same odds. It just ain't so. So, as you can see, there are quite a few reasons not to rely on those statistics too heavily.
      Learn all you can, keep a close eye on your doctor and I guarantee you'll beat the odds by a wide margin! Jon.

Sharon P's September 7 reply to Lynn D's September 6, 2000 - Hi, One of the things that helped me most in dealing with cardiomyopathy and my ICD was Cardiac Rehab. Not just the exercise but the education that went along with it. I was too terrified to do any type of exercise on my own for fear that I would damage my heart. I went through Cardiac Rehab 2 times, once paid by my insurance although my doc had to lie about my diagnosis since the insurance wouldn't pay for CHF. The second time I went through the program was as a part of a clinical study which proved that women with CHF had a lower rehospitalization rate if they went through rehab. Now I am confident and faithful about going to the gym 3 days per week, always outfitted with my Polar Beat heart monitor. And for all this, I feel lots better. Blessings, Sharon P.

Sharon P's September 7 reply to Thelma's September 6, 2000 - Hi, I had an EP study in 9/97 and the next day had an ICD implanted. All this occurred 2 weeks after I found out I had heart problems. I found the EP study to be a easier than the angiogram (cath) I'd had the previous day even though I went into V-fib and had to be cardioverted during the study. The defibrillator has discharged one time and saved my life, for which I am grateful. It wasn't a pleasant experience but I also have less fear than before it went off just because I know what it feels like. I give you that history to say that if I had to have the study again I wouldn't be fearful, it really was okay. Blessings, Sharon P.

Ginger, September 8, 2000 - Hi ya'll, I just wanted to let you all know that just because the modem gods won't let me on, that you guys are in my thoughts and prayers anyhow. If you wrote me, I probably did not get it. Between Bellsouth and my own broken modem I am rarely on and don't get half my mail. Fun huh? <g>
     A quick update on my health, though. After the fiasco with the weight loss and my meds getting messed up I ended up in the ER with blood in my urine. I have a real bad kidney infection, they think. I go back Monday and they may possibly do x-rays with iodine because of my family history and the fact that even after a week on antibiotics I still don't feel so hot. So far my BP is doing okay with the big reduction in my ACE inhibitor.
     Anyhow, I just wanted to let you all know what was going on and that I wasn't ignoring anyone, just can't usually get on. Bellsouth tells me every day it will be fixed tomorrow! <lol> Their tomorrow just doesn't happen, though. It is up right now but we will see for how long - usually an hour or so! So stay well ya'll and I will cya's on ICQ or at chat whenever either Bellsouth lets me or I get a new modem. Oh yeah, I am changing insurance. Does anyone think I can do this without getting hit with a pre-existing condition? I'll let ya know. Hugs and prayers ya'll, Ginger.

Lynn D, September 8, 2000 - Hi, Thanks to all for your info on cardiac rehab. I found out about a study in the Emory school of nursing that is studying the right combinations of rehab, nutrition, support groups and education that will best serve CHF patients and keep them healthier, out of the hospital and impact their life expectancy. Count me in. Lots of it is redundant but they are doing some great tests and support. I'm set up for the cardiac rehab starting next Wednesday. I've been a walker since 1988 and my only problem with weight is keeping it on. This should be a challenge for those pros. <g>

Christy P's September 8 reply to Beverly C's September 7, 2000 - Hiya Beverly, Jon and all. I had reasonably low blood pressures (120/70) before I was diagnosed with IDCM. It took me 10 months to titrate up to a dose of 12.5mg Coreg twice a day. I spent most of that 10 months very dizzy, lightheaded and with profound fatigue, sleeping more than 12 hours a day and napping the rest of the time. This was complicated by increased dosages of Prinivil (my ACE inhibitor) which they had to stop when I got to 10mg in the morning and 20mg in the evening. My blood pressure would vary from 100/60 to 90/50, but they were trying to maintain it at 100/60. These days, I still have the occasional lightheadedness and fatigue but not as debilitating as the first 10 months, and my BP continues to be around 100/60.
     I guess what I'm trying to say is to hang in there and maybe your body will adjust so later down the road they can increase again. It wasn't unusual for me to go 2 months between increases.

Christy P's September 8 reply to Gary Nichols' September 7, 2000 - Hiya Gary, I thought I'd pass along my hot tub experiences so you can add yet another opinion to your list. I have IDCM, an ICD, and low blood pressure. My doc okayed hot tub use with these things in mind. Keep the temperature at 100° or less. Never go in alone! If you start feeling not okay, get out immediately. Wear a medic alert medallion. I use my hot tub at least 4 times a week and have never had any problems. The doc explained to me that his biggest fear is of me falling asleep if my BP drops, and drowning. Hence the rules.

Donna T's September 8 reply to Jan's September 4, 2000 - Hi Jan and Tonya, We live 30 minutes north of St. Louis and my husband goes to the Heart Failure Clinic at Barnes Hospital. He has been going there since January of 1998 and had a heart transplant August of 1999. Dr Greg Ewald and Dr. Joe Rogers are the doctors he normally sees and they are both great. The phone number is (314) 362-6383.

Dana J, September 8, 2000 - Hi Jon and Leland, Thanks for the ideas. I go back to the doc in a week and I'll ask him about both medications. Right now I am just taking the regular potassium tablets, huge white things. I ended up in the ER last night for IV Potassium and surprise, now my magnesium has bottomed out also. After 10 hours of receiving both, I'm better today but I'm still short of breath. I can understand why my potassium is low but first it was my B12 and now magnesium. I don't understand why all of this is going on.

Jon's September 8 reply to Dana J's September 8, 2000 - Hi Dana, Here's a study summary from last year:

Pearls and Pitfalls in the Use and Abuse of Diuretics for Chronic Congestive Heart Failure by J. Constant from Cardiology 1999;92(3):156-61
     "The main purpose of using diuretics is usually lost sight of. It should be for relief of shortness of breath by using the least necessary amount of diuretic. Among the hazards of using more diuretic than is absolutely necessary to achieve the goal of relieving shortness of breath are low output state and thickened blood. Exam of neck veins and amount of shortness of breath should be the main methods for determining diuretic dose. Often forgotten in using diuretics is that potassium without magnesium will not enter cells. Also, the tendency to ignore loss of the water-soluble vitamins thiamine and ascorbic acid occurs and may result in edema that does not respond to therapy, as well as inability to manage the stresses of congestive heart failure."

Gus R's September 8 reply to Jon's September 8, 2000 - Hi Jon, Since you're now in the big leagues website-wise, how about putting the last paragraph of your September 7 post in prominent places on your site; And do it in spiffy, bold, flashing, multicolored, outlined text? I think that statement is the most important thing there is for newly diagnosed CHFers to learn: "Learn all you can, keep a close eye on your doctor and I guarantee you'll beat the odds by a wide margin!" Perfect!
     Thanks to all for the kind words about guilt. One e-mail said, "...those of us at Jon's place. We really do care." That's very true and I don't think I've ever been associated with a nicer group of people. It's almost worth getting CHF to be able to join this group, but not quite. ;-) Gus R.

Frank Smith's September 8 reply to Ginger's September 8, 2000 - Hi, I am always puzzled with the part about people paying money to access the Net and then complaining about terrible service. Just a reminder to everyone that there are many free Internet service providers, hopefully in the deep south too. Besides free ISP connections, they also have free e-mail accounts which work like a charm. Later, Frank Smith.

Frank Smith's September 8 reply to Jon's September 8, 2000 - Hi Jon, I hopefully am not replying to something out of context, but if the reason for using a water pill should be for SOB, then is someone such as myself who only uses the dreaded water pill for mild swelling of the feet and ankles, abusing ur misusing the drug? Later, Frank.

Jon's September 8 reply to Frank Smith's September 8, 2000 - Hi Frank, I just quoted the article to point out some facts about electrolytes for Dana. I don't think I'm going to defend the author's opinions on diuretic use. For what it's worth, the article said the "main purpose" was for SOB - not the only purpose. ;-) Jon.

Jon, September 8, 2000 - Hi everyone, This is from Jeff, our LVAD website friend:

"Howdy Jon, I have been in the hospital since early Monday morning. I got a heart! I have not had much of a chance to let anyone know so if you want to do me a little favor and post it for me, I would appreciate it. I will catch you later, man. My prayers have been answered. Jeff."

Jon, September 8, 2000 - Hi, It's me again. Kathryn posted one on the Loved Ones' side that really needs CHFer input. Please wander over there and take a look. Thanks, everybody. Jon.

Ginger's September 10 reply to Frank Smith's September 8, 2000 - Hi Frank, There are free ISPs but not free DSL, and it doesn't much matter how free they are if your modem doesn't work, which mine isn't doing very often (I am talking about my regular modem) Thanks for the advice, though. Hugs and prayers, Ginger.

Doug K, September 10, 2000 - Hi all, I just wanted to take a moment to pass on what I think is a rather novel way to store grapes: Freeze 'em! A coworker told me about it. Maybe I am just a hundred years behind but I had never heard of it. They are great, especially in hot weather. They are obviously cold, tasty, and cool you, and you don't take in a major amount of fluid, something we know we shouldn't do with our problem. The best to all of you.

Brenda H, September 10, 2000 - Hi, Can someone either tell me or direct me where to go where I can find the "normal" measurements on the LV and atrium sizes? I thought the LV was suppose to be 5.6 to 5.8cm but someone disagreed and now I'm questioning it. Thanks in advance, Brenda.

Jon's September 10 reply to Brenda H's September 10, 2000 - Hi Brenda, You can find "ranges" for the upper size limits considered normal at echo labs in the article at the end of the echo page. Look for the little tables with borders around them. Jon.

Bev T, September 10, 2000 - Hi everyone, I went to Shands last week and got some not so good news. I had a right heart cath in May and my wedge pressures were 40. I went to our cabin in the mountains (by myself) and spent 7 glorious weeks in the cool air doing some gardening and lots of traveling around, about 4000 total miles. I went for a regular check last week and now they are all upset about my wedge pressures. I go in for another cath on the 19th. I'm not sure where they will go from here but I'm a bit nervous. Does anyone know what is a "normal" wedge pressure and what the "high" is?
     I read the post about the fellow who was put on an LVAD on a fast track! I don't want to be excluded from the option of a transplant but that is a possibility if they can't get my numbers down. The most amazing thing is I don't feel bad! I'm requesting your prayers this week. Thanks, Bev T.

Helen Otis' September 10 reply to Beverly C's September 7, 2000 - Hi Beverly, I have always had low BP, confusing and annoying the doctors since I am on the heavy side. At a doctor's appointment yesterday my BP was 96/60 with a pulse of 95. I take 3.125mg Coreg twice a day. I have been on this dosage since being diagnosed in October of 1998. I hope this helps you some. Helen Otis, age 26, EF 25-30%.

Bobbye H's September 10 reply to Beverly C's September 7, 2000 - Hi Beverly, I am at 25mg of Coreg twice a day and my pressure has been 90/60 or a bit lower since the beginning of Coreg. Pulse is generally 55 to 60. I had some lightheadedness and still do at times. My doses were increased every 2 weeks with no major problems. We all react very differently to Coreg. To me it really was no big deal and since I was so in the dark at the time and not asking questions or reading, I just took the pills and didn't think twice about the increases. My doctor told me it was the best thing for me and I just followed his instructions. I know if it was happening now I would be asking more questions, especially about my blood pressure, but at that time I think I was still shell shocked by CHF and just being a sheep. <g>

Ben B's September 10 reply to Beverly T's September 10, 2000 - Hi, From what I've read, a normal wedge pressure in the right atrium is less than 18, with greater than 30 being very high. I don't really understand how they determine who gets this right heart cath because I've never had one and for all I know my pressure could be higher than yours, especially since you say you feel okay and seem fairly active. I think they can try additional drug therapy before jumping straight to LVAD or transplant, but I'm not sure. I'm going to post this in case anybody else wants to know the numbers.

Karen K, September 10, 2000 - Hi, Is there a difference between wedge pressures and blood pressure? I read Beverly T's recent post concerning her wedge pressures and this was followed by two posts regarding Coreg and blood pressure. Karen K.

Jon's September 10 reply to Karen K's September 10, 2000 - Hi Karen, PCWP, or wedge pressure, or pulmonary capillary wedge pressure, is pressure as measured by wedging a catheter into the pulmonary artery so it to blocks the flow of blood. That pressure is supposedly equivalent to the pressure in the left atrium (rather than the ventricle). I have asked a couple of CHF docs about the "healthy" range of PWCP and will let you know when I get an answer. Jon.

Diane, September 10, 2000 - Hi, I check the board daily and it is a source of sanity for me. I have gone to Shands, to the Heart Failure Clinic, since January of this year, after 3 heart attacks and a quadruple bypass in April of 1999. I was on lots of diuretics and they said I was dehydrated. I have gone from 40mg Lasix to 80mg twice a day in the last 3 months and still have trouble breathing by the end of a day. I have ascites and debate whether I am delivering one or two babies at night! I sleep with oxygen and have sleep apnea. I am definitely taking Lasix for SOB but it seems to not be working so well.
     I also go to cardic rehab which has helped my stamina somewhat but I still lose oxygen saturation some days and can't get it back, and have to come home. I take 12.5mg Coreg BID and I have no bad effects with BP or heart rate. I think my heart must be having a harder time and my fluid retention is up. I have a great deal of ischemic heart tissue because of damage from the MIs. I will call Shands tomorrow and see what they say but I am wondering what's going on. Reality is far easier to deal with than my imagination.

Jon's September 10 reply to Diane's September 10, 2000 - Hi Diane, I didn't see a bio for you so I'm not sure what your meds are. Do you take an ACE inhibitor? Aldactone? Zaroxolyn? Have your doctors considered moving you to a stronger diuretic like Demadex or Bumex? It sounds like your heart function (output) is down. If none of the above work, maybe an inotrope is an option. Jon.

Dana J's September 11 reply to Ginger's September 10, 2000 - Hi Ginger, Check out Dana.

Jean C, September 11, 2000 - Hello, Today's board was great for me. Doug, the idea about grapes is more than worth a try and grapes right now are relatively inexpensive. Cold, frozen grapes - yummy. Diane, it was wonderful to find someone else in a rocky boat like mine. I spent several fruitless hours in the ER last week because of shortness of breath and kept telling them it felt like I was 10 months pregnant. The doctor could feel a mass in my abdomen but couldn't see it on an x-ray and actually asked me if I really thought I was pregnant (I'm 69). Now I have a word: "ascites." My doctor has since started me on an inhaler and totally cut out my Coreg and Zocor along with the Zestril. My heart beat was too slow. I'm feeling better because my heart beat is up and I try to eat only a little at a time. I am still "pregnant." Let me know if you manage to deliver. I'm throwing in the towel and going on permanent maternity leave starting next month. I think they call it retirement. Jon, I remember you said that you store extra fluid in your abdomen. What do you do when an extra Lasix doesn't help? Good luck and happy fall, everybody, Jean C.

Jon's September 11 reply to Jean C's September 11, 2000 - Hi Jean, As it so happens, last night I wrote a new FAQ page about edema. Take a read and let me know if it helps. The title is a temp but I'm open to all suggestions and experiences to include about the info presented. Jon.

Lydia Moore, September 11, 2000 - Hi Jon, The last week I have been experiencing something in my hands which is very uncomfortable. The tops of my fingers itch to the bone, are red, and throb. They are also warm. Do you know if this is meds or CHF-related? I wouldn't even know who to go to with these symptoms. I suppose my heart doc would be a good start. If you have ever heard of such a thing and have a clue what it might be, I would be very grateful. God bless you and your family and all on this site, Lydia.

Jon's September 11 reply to Bev T's September 11, 2000 - Hi Bev, Ben was right on the money. Both CHF docs I asked about wedge pressure say that anything from 5 to 12 is normal and anything 18 (mm of mercury in the gauge) or over is too high. High PCWP drives fluid out of the blood stream into the the airspaces in the lungs. For sick hearts though, 12 may be too low to push the blood into a stiff chamber. Jon.

Diane P's September 11 reply to Jon's September 10, 2000 - Hi, I am on 0.25mg Lanoxin, 25mg Aldactone, 12.5mg Coreg twice a day, 80mg Lasix twice a day and 5mg Vasotec twice a day. I called Shands today and of course my doc is out of town. They want to admit me but there are no beds there and it is 2 1/2 hour drive, so I am trying to get a local internist to admit me locally and dehydrate me. They announced I shouldn't go to rehab with pulmonary edema. I will keep you posted. I thank God for you and this site. I have more faith in this site than I have in most MDs.

Rich Crosier, September 11, 2000 - Hi, I have read most of the letters and comments, and am not making any comments pro or con but as a heart patient with CHF, CABG x3 and an ICD, I would like to recommend to anyone - patient, caregiver or family member - to contact The Mended Hearts. This is a support group for patients, family and caregivers. While I was having bouts of depression and was ready to pack it in, a friend suggested calling them. I called at 11:00 PM and the president of the local chapter spoke to me for 2 hours. His help and support, as well as that of the group, were invaluable. If anyone would like information, contact me. Mended Hearts is an international organization.

Tracey, September 11, 2000 - Hi, I am 33 and was diagnosed one month ago with CM caused supposedly by a virus. It was caught because I was in CHF. First, I love this site. It's the only positive site I can find. Everyone else pretty much says I'm going to die within 5 years. I need to know if any of you have worsened since your original diagnosis or remained stable. I just feel that I'm waiting every day to get worse. Granted, I'm not handling this well yet but I am learning. I'm on 6.25mg Coreg, Lanoxin and Zestril, and temporarily Xanax. Any information as to what I can expect as a rule would be so appreciated. Thanks!

Jon, September 12, 2000 - Hi everyone, I'm in need of some CHF questions - the kind that you always wanted a CHF doc to answer but they never do. Please send me at least a few. A CHF doc that I know personally, wants a block of questions to write about as he finds time and I told him you guys would come up with some good ones. Just e-mail them to Jon.

Ginger's September 12 reply to Dana's September 11, 2000 - Hi Dana, Thanks for the Url. It may be one way to go. ;-) Thank you all for your e-mail. When I get back up and running and not borrowing a computer like I am at the moment, I will get back to you all. Hugs and prayers, Ginger.

Donna Z's September 12 reply to Tracey's September 11, 2000 - Hi Tracey, First of all I believe the 5 year stats are before beta-blockers and that number is just a projection. There are a lot of people on this list who have had this illness more than 5 years so please don't dwell on that number. Time is way too short to dwell on things. We have been given a wakeup call to live life to the fullest each day. Try to think positively.
     Remember that attitude is everything, and I really believe that. As for feeling better, my EF has stayed the same for a year, but I feel a great deal better. I can even walk 3 miles at a clip without getting short of breath. Talk to your doctor about a rehab program that might help you. Hey, I even run around a dog show ring so I think I'm feeling a lot better. Just remember that everyone is different in how they respond to meds and how they feel. Give it time.
     Right now you are going through a pity party for yourself. I think we have all been there, done that. One day I woke up and decided I wasn't going to let life pass me by so I started doing things I enjoyed doing and have been going strong since then.You're young and who knows, you may get back to normal in time, so try to think positive. One thing I would strongly recommend is seeing a CHF specialist if you aren't already seeing one, just remember a regular cardiologist can treat you but they really don't know enough to do a great job, and a good cardiologist will tell you that. Just remember it's your health, not some doctor's, so take charge of it! The very best of luck to you, Donna.

Kat, September 12, 2000 - Hi, I have class 4 CHF, where I've been for about 6 months now. I'm still working on my bio, trying to keep it from running too long, which is hard. I was diagnosed with PPH and CHF 40 years ago. (Jon's note: PPH is primary pulmonary hypertension) To have been class 4 at age 2 years and to survive this long is unheard of but I have always had lots of attiitude! I also love life even though I have never been well. I moved very slowly up to clas 2 and held it for a long time, off and on meds. It's tough now but I am tougher. I've had plenty of practice. I've never known anything different but I feel incredibly blessed.
     I realize it is much harder for those who were healthy or always thought of themselves as healthy before their illness was discovered. I don't kid myself. I cannot relate to healthy. By the time I was old enough to find out it wasn't normal for children to be regularly tortured by people dressed in all white or to live inside plastic tents or eat lousy food from a tray, it was just too late for me to adjust. After all, just one hospital stay ran from 9/60 to 10/61! Until I was 9 years old, I was hospitalized frequently, never less than a month. My life expectancy has always been measured in months, never years. I dared to ignore it. At age 15, I came up with a philosophy, a motto if you will: "I cannot live my life dying. I can only live." Kat.

Gatha E's September 12 reply to Jon's September 11, 2000 - Hi Jon, Great page on edema, I learned about pitting. I just have not gotten that swollen. I am having a lot of problems right now with swollen leg and ankle, just the one that had veins stripped for bypass. Have you heard of other people just having swelling in one leg? I also get very SOB when I get this way. It seems like I live in the doctor's office every week. You are doing a great job and I really appreciate it, Gatha.

Rick M's September 12 reply to Tracey's September 11, 2000 - Hi Tracey, Since my youngest child is older than you, notice a slightly avuncular note in my reply. First of all, I'd guess that all of us accept that we are going to die someday. That's a given. As a veteran of WWII, I know that my fellow veterans are dying at the rate of 1,000 a day. So far none of them have been me, so we just keep going. Some days are better than others with CHF but some days are better than others for millionaire rock stars, too. Once you get your meds in balance and learn to eat and drink sensibly, you will find that life with CHF can be almost pleasant, if a little bit bland, but I never promised you a rose garden. (or did I? <g>) Finding your blood glucose readings the same as the day before and your starving and naked weight the same as before might seem boring but it goes give you a feeling of accomplishment. Count your blessings.

Claire, September 12, 2000 - Hi Guys, Claire here! I loved the FAQ page about edema! I rarely swell in my ankles and if it does get to that point it's bed rest for 8-24 hours for me with my feet way up and extra Lasix! My face is the first to go. Sometimes hubby will say to me, "Go lay down, I'll bathe the kids and put them to bed. Your face is getting fat!" If I weren't a CHFer I'd belt him one but he often sees it before I do. My hands and belly go up next and I feel like that baby is coming soon! I get so winded if I bend over to pick up toys or feed the dog when this happens. As always, thanks for the info and validation. I felt like a freak until now with my odd swellings and slim ankles (well, relatively slim) Love and peace to all, Claire.

Frank Smith's September 12 reply to Tracey's September 11, 2000 - Hi Tracey, I am old enough to be your father but that does not allow me the presumption that I am any more courageous than anyone else and certainly not more well informed than the next CHF patient. Having said that, I had CABG surgery in 1990 for CAD but I believe my CHF was caused by an MI in 1987, which necrosed 30% of my heart muscle, thus my cardiomyopathy. In 1991 I started developing CHF symptoms but doctors behaving the way they behave, I could not get a diagnosis of CHF out of them until 1995. My genetic predisposition, like everyone's, has a great deal to do with how the body responds to cardiomyopathy and CHF. If you are able to enjoy Jon's web site long enough, you will realize what I have just said to be true. I have told you about myself to help you understand that every body is different and because in my own circumstance, I firmly believe that the dynamics of my progress in dying is two-fold. It is up to God's will number one and my genetic makeup number two. My psyche will certainly be able to handle God's will and my physical ability is pretty much up to my genes. There are certainly other factors involved and I hope my short explanation will allow you to deal with the unknown. Later, Frank.

Diane P, September 12, 2000 - Hi, Last night I went to the ER and came away so frustrated, I was ready to go postal. Ascites is not recognized as a part of heart failure at this fine medical facility. I was seen by a PA and never saw an MD. I finally convinced them to give me an IV diuretic. We did Bumex, 2mg. When I asked how we were to measure the output, one would have thought I was crazy. I insisted on a foley cath. After that I got 80mg of IV Lasix and was sent home. No fluid in my lungs, no SOB. I took my foley and home I went. I called Shands at 8:00 this morning and it's now 6:00 PM and no call back, and my pregnancy is at 7 months and growing. I am putting myself to rest and this too shall pass. It's a shame that incompetence concerning CHF is the norm, not the exception.

Doug K's September 12 reply to Kat's September 12, 2000 - Great motto, Kat! Sometimes it takes a long time to get to understand that. You were a very profound 15 year old! Best to you.

Sharon P's September 13 reply to Tracey's September 11, 2000 - Hi, For the first few months after my diagnosis with cardiomyopathy and having an defibrillator implanted, I believed the 3-5 year life expectancy too. Fortunately, nothing can be farther from the truth. With meds, low sodium diet and regular exercise my EF has gone from 28% to 52% and my heart has reduced in size to nearly normal over the past 2 1/2 years. Donna Z is also right on when she says that attitude is everything. Do the right things medically, have a good attitude and life can be long and good. Blessings, Sharon.

Sharon P, September 13, 2000 - Hi, Good news for those living in Orange County, California: There is a CHF clinic coming soon. You can e-mail me for the name and phone number. Blessings, Sharon.

Jean C's September 13 reply to Jon's September 11, 2000 - Hi Jon, The FAQ page on edema is great and all the other responses were so to the point. I really appreciate the help here and have met some super nice people. I am a number cruncher, everything in a tidy box type person so the question I wish I had asked is, "Please give me a name for what is wrong with my heart." Good luck with your efforts, Jean C.

Jon's September 13 reply to Jean C's September 13, 2000 - Hi Jean, I'm sorry but for an actual, accurate medical diagnosis, you'll need to talk to your doctor. Everyone has a sligtly different situation even if they have the same underlying illness. Jon.

Kat's September 13 reply to Doug K's September 12, 2000 - Thanks Doug, I thought at the time that I was just angry because I wanted to go to college and everyone was trying to discourage me without saying why. I thought something like, "I can't live my life waiting to die." The motto evolved from there, Kat.

Gaynell F, September 13, 2000 - Hi everyone, My name is Gaynell. Up until a month ago I thought to be a perfectly healthy, active mother of 10 year old twin sons. I ended up in the ER very short of breath and very swollen. I had gained 41 lbs of fluid in 10 days and could not sleep at night because I could not catch my breath. I was diagnosed with DCM and type 2 diabetes. My EF was 20%. I spent a week in the hospital and was put on Lasix, Lanoxin, Aldactone and Accupril.
     My cardiolgist sent me home and told me to do nothing but rest until my next echo in a month. Is this normal? I feel incredible, like nothing is wrong with me at all, but am about to go insane staying in bed so much. I have done a lot of reading; this site is great. I have learned more here than anywhere else. Thanks to all of you for being so helpful. Thanks, Gaynell.

Jon's September 13 reply to Gaynell F's September 13, 2000 - Hi Gaynell, If your doctor suspects myocarditis, then rest is an accepted part of initial therapy. To me (not a doctor!), you don't sound like you've had myocarditis. It might be different for someone with newly diagnosed diabetes also. I honestly don't know about that. Be sure to discuss this with your cardiologist soon and if he is not a CHF specialist, please make the switch! Jon.

John Len's September 13 reply to Gatha E's September 12, 2000 - Hi Gatha, Yep, you are not alone in this cold, cruel world with one leg, a foot, and an ankle swelling from edema after the vein came out for bypass surgery. What gets me is that it took about 8 years to decide to get edema. It's not extreme but I don't care for it. Fact is, I would like it to go away. I use a muscle stimulator, a compression boot and Lasix at various times to keep it down but it doesn't seem to want to go away. Sometimes it will get better for a few days but it always comes back. I have had the condition for about a year or so but my cardiologist and GP have been no help. John.

Jeanette's September 13 reply to Tracey's September 11, 2000 - Hi Tracy, I am only 33 and have had DCM for over 2 years now. I have been stable since the occurence. I am also taking 6.35mg Coreg twice a day, 20mg zestril a day and 40mg Lasix each morning. I can honestly say that I am stable and that my cardiologist doesn't see me for 6 months at a time. You need to read The Manual and take a step back and breathe. Don't let yourself get all worked up that you are going to get worse. You are on some of the best meds and you should let the meds take over and then you will hopefully feel better, as I did. You are not alone and are not going to die, at least not right away. ;-) We are all going to go someday but let's postpone it as much as possible. If you ever want to talk, just e-mail me or write a post. I read every day. Take care and good luck, Jeanette.

Jon, September 13, 2000 - Hi everyone, My e-mail has been down all day so I'm not ignoring anyone, I just haven't received your message yet. My scripts are running okay, so The Beat Goes On. <g> I have finished the initial rewrite on my transplant pages. If anyone has time and inclination, please take a look and let me know where I made mistakes so I can get them fixed. Broken links, error messages, anything that just doesn't look right, whatever. I am just learning JavaScript, so we'll see how well I did(n't). The pages start here. Jon.

Jeanette's September 13 reply to Rick Crosier's September 11, 2000 - Hi Rich, I live in New York state and was wondering how I would get hold of this group. Is there a web site and if so could you please give it to me? My girlfriend would like to know how to get hold of them as well. Please email me or post if possible. Thanks, Jeanette.

Rick M's September 13 reply to John Len's September 13, 2000 - Hi John, The next time your edema goes away, why don't you leave the Country Ham out of your diet for a few days and see what happens? Anyone living within 50 miles of Smithfield, Virginia, is subject to the fumes from the Smithfield Ham plant, and can't be too careful. I hope this advice helps you as much as I enjoyed giving it. ;-)

Donna Z's September 14 reply to Gatha E's September 12, 2000 - Hi Gatha, I had a vein stripping about 20 years ago for a blood clot problem I was having. Even today that leg will swell a little. Before I was finally diagnosed with IDCM and CHF, that leg was the one that would swell, so it doesn't surprise me it is happening to you.Your body - leg - lost a vein and so the swelling will happen, and you now have less blood flow to that leg. Now I'm not talking about a huge difference in one leg from the other but a slight swelling. Most times it's just a tad larger than the other when measured by the nurse who comes to my home to check on me. If you are having noticable swelling, call your doctor. Maybe something is wrong. My leg would also get more edema in it during certain times of the month. Donna.

Mary H's September 14 reply to Rick M's September 13, 2000 - Hi Rick, Does that Virginia ham plant also sell braised breastbones? Maybe they can be cured like a ham. Now that would be a smashing recipe.

Carl, September 14, 2000 - Hi Jon, I called MyoVive about the special. The day I called, they said they didn't know about it but that they would check and call me back. They did and stated I could order the 3 months' supply for one month's price deal. They seem like nice people to deal with. Thanks again for your site. I float in the background and read nearly every day. Carl.

John Len's September 14 reply to Rick M's September 13, 2000 - Hey Rick ole buddy, Haven't you heard? They invented a salt-free, fat-free, pork-free, taste-free Smithfield ham. Enjoy! ;-)

Anthony, September 14, 2000 - Hi all, I am a newbie here. I've been lurking a couple of days and think this is wonderful. I am a 55 year old male with DCM, CHF, hypothyroid and depression. My EF is 29% and holding steady there for about a year and a half. My CHF was diagnosed about 2 years ago. My meds are 25mg Coreg twice a day, 20mg Accupril, 0.25mg digoxin, 0.225mg Synthroid, 150mg Effexor (down from 375mg), 450mg Wellbutrin and 20mg Celexa twice a day. I have been on so many anti-depressants I can't remember all the names. That is my major problem.
     I have been treated for depression since right about the time I was diagnosed with DCM. I have never really gotten my depression under control for more than a couple of months. Now I find myself so badly depressed I cannot even go to work. I am mentally unable to leave the house, almost. I haven't been to work in 2½ months and have only been out of the house other than for doctor's visits 5 times. Three of them were to my son's house to see my 3 week old granddaughter (gee, that sounds nice).
     I am at my wit's end with this. Physically, other than feeling very tired much of the time I feel pretty good. I work for the government and have been offered a disability retirement; not a lot, but something. It seems my depression went over the edge just about the time I got to my highest dose of Coreg. Now since taking the Coreg I have less physical problems. Has anyone any thoughts?

Jon's September 14 reply to Anthony's September 14, 2000 - Hi Anthony, Welcome to Jon's Place. Why not insist to your doc that you come off Coreg or at least drastically reduce the dose (gradually!) to see if you feel less depressed? Depression is a known side effect of Coreg. Jon.

Jon, September 14, 2000 - Hi everyone, I still do not have working e-mail. If you really need to reach me, use Jon.

Jon, September 15, 2000 - Hi guys, I still have no working e-mail but have narrowed it down to almost certainly being Prodigy. If they don't get it fixed by Sunday, I'll go to another ISP. Till then, thank you for your patience.
     Also, please do not send me messages in all upper case. I have to re-type them completely. Thank you, Jon.

Mike Joye's September 15 reply to Tracey's September 11, 2000 - Hi Tracey, Don't believe half what your doctor tells you until you have read this whole site. So much information on the web is incorrect but this site is factual because we all experience the same problems in our real lives. At first, I was told a virus had attacked my heart and that I had a 50% chance of getting better, a 25% chance of staying the same, and a 25% chance of getting worse, which wold mean a heart transplant. I take my meds every day and get my exercise and I feel great. My diagnosis was 1 1/2 years ago and my EF is till 35-45%. My cath showed 42%. Everyone knows the cath is more precise except some of the doctors! My cardiologist seems in too big a hurry to talk sometimes. Thanks goodness fpr my interneist.
     Listen to those who have been there, and just keep on trucking. I work every day and do some yard work every day. I play golf every week. I sometimes feel tired but I sleep like a baby. I know that I am very fortunate.
     Keep a positive attitude and aska lot of questions. Sometimes you have to push for answers and it is very imporatnt to have the support of yr doctors and nurses. If they do not give it to you, find another one! God loves you! Mike Joye.

Donna Z's September 15 reply to Rick M's September 14, 2000 - Hi Rick, I love your sense of humor. You crack me up. For one moment I thought someone out there was eating ham! Donna.

Phyllis A's September 15 reply to Tracey's September 11, 2000 - Hello Jon and my friends, It has been a long time since I posted. I have been very busy selling my book on breast cancer, now on Ebay. I also had a death in my family: my uncle, was very sick like my dad and also on dialysis. He was diagnosed with terminal cancer and given 2 months, but just made 2 weeks. Luckily he did not suffer long. Your meds are balanced, which took my docs a long time and your diet, and keeping that weight down. I lost 25 lbs since February, watching my diet. So all is not gloom. I've been stable for months now so there is hope for us. Hang in there and God bless.

John Len's September 15 reply to Mary H's September 14, 2000 - Hi Mary, At Smithfield they cure everything from the front end (the oinker) to the tail end (literally). Yes, even the tail, and everything in between. If you ever found out what went into hot doggies and bologna, you would swear off them permanently. ;-)

Dana W, September 15, 2000 - Hi, Has anyone with DCM been diagnosed with both fibromyalgia and osteoporosis within a month? If they give me bone building meds, I might die of heart failure. I don't know yet what my bone density is but I will find out in no more than 2 weeks, believe me! I have a CFS appointment in December with a Dr. Buchwald.
     Jon, what are sources for the ingredients in MyoVive? Animal origination? I would be glad to support if veggie. I am glad it is working for others. Thanks all, for any feedback, Dana W.
Jon's note: some sources are animal - there are no non-animal sources for some supplements

Tom B's September 15 reply to Tony C's September 14, 2000 - Hi Tony, I've had some similar experiences to yours and hope I can offer at least on point sympathy. I'm also age 55 and I was depressed for several years before my CHF diagnosis last April. I'm pretty sure my symptoms were true depression, yet oddly they seemed to recede about a year before I wound up in the hospital last April. In retrospect, maybe some of my symptoms for depression (major league fatigue, terrible sleep, tough getting to work, etc) were in fact early warnings of CHF. Still, I am sure they were in fact depression.
     I'd be willing to match you drug tried for drug tried to knock the depression. Nothing did and ultimately after maybe a total of 5 years trying the drugs it just drifted away. Then a few months later I was still extremely tired and couldn't breathe. That landed me in the ER and introduced me to CHF. So, what to do about the depression? First, understand you are not alone. That probably doesn't help the day to day effort things take, but you are not alone in either your symptoms, lack of results, or knowing there are other folks who care about guys like you.
     I guess my next thought is to keep trying the meds. At one point I was referred to the University of Washington at Seattle's clinic for pepression and anxiety. They had a few new things to try of course, which didn't help either, but their main emphasis was that many, many doctors don't let the medications work long enough and don't ratchet them up to high enough levels. I'm not suggesting you try anything different as a result of my experience, but perhaps it may help in some manner in talking with your doctor. Maybe there is a med that will work for you if tried long enough at a high level.
     A word about granddaughters: I have 4 of them myself, currently ages 3-10 but they were all 3 weeks old at one time. If seeing your new one gives you pleasure, then do more of it! Everybody wins that way. I can also offer 2 other items a pretty good counselor once helped me with. Note something - anything - that was good about yesterday;. no matter how small a thing, something that was good about yesterday. I mean small things like the phone didn't ring yesterday when I was taking a nap, the newspaper didn't land in the bushes, I had a good hair day, whatever. Then identify some very small thing to be looking forward tomorrow. Again, make it as small as you need to: "Hey, ok! Three football games on tv tomorrow!", "I'm looking forward to reading Jon's site tomorrow and maybe helping somebody else", or "Tomorrow I will have a good hair day!"
     Finally, set yourself some bigger, longer term things to be looking forward to: again, the granddaughter is a great place to start; her first month birthday, her first year, her first steps, her first words. How about doing something for her now that she won't appreciate for years like a letter from you to her that gets opened when she's 21? This has to do with helping somebody else and doing so inherently helps you feel better as well, as I am by writing this to you. Depression is a real burden, but please take hope. My thoughts are with you. Tom B.

Brenda H, September 15, 2000 - Hi, I'm still confused. I don't know the differences between Cm and mm. My LV is 6.1 cm so what is that in mm? Thanks again, Brenda.

Jon's September 15 reply to Brenda H's September 15, 2000 - Hi Brenda, Not to worry, almost all heart sizes should be listed in centimeters (cm). One centimeter = 10 millimeters. So I figure 6.1cm would be 61 mm but then again, my brain seems to be mush today so I stand ready to be corrected. I hate the metric system. I mean, if God wanted us to use the metric system He would have given us 10 fingers to count on, wouldn't He? Wait a minute, hmmmmmm. <g> Jon. See this page and this page for more.

Kat, September 15, 2000 - Hi, After reading concerns here regarding diet, weight and nutrition, I did some research. I have been slowly but surely losing interest in eating. When I go to clinic, I seem very thin compared to the vast majority of my doctor's patients and I know he is worried because at the same time, I have edema problems constantly. I thought it was just class 4 reality.
     I began to wonder if I wasn't properly absorbing nutrients and this was the reason for my lack of interest in eating. I don't even crave anything. In my regular e-mail to my doctor, I told him what I'd learned here in particular. It turns out he followed up with research of his own - he is a CHF and transplant specialist who strongly believes in taking extra vitamins and anti-oxidants and supports this wholeheartedly - with regard to organ damage and nutrient absorption.
     Now I am taking prescription vitamins with digestive enzymes, which he believes will increase my appetite, ease my arrhythmia, reduce my edema and help me feel stronger. He wrote back that malnourishment does result in apathy, even depression. Not everyone has been ill as long as I have and wouldn't necessarily have the organ damage or absorption problems I do. However, diet and nutrition are very important to our sense of well being as well as a positive outlook. Since I used this web site, thank you so much Jon! Kat.

John Len's September 15 reply to Tony C's September 14, 2000 - Hi, Here is an Url for a sleep apnea forum you might find interesting. Many in the forum have your same symptoms of depression and some went for years without finding an answer. I am not saying this is your answer but it is worth seriously looking into as it seems sleep apnea has been the answer for many. John.

Patti D, September 15, 2000 - Hi everyone, I just discovered this site about a week ago and have been reading it since then. I am 44 years old and was very healthy and active until March of this year, when I slowly started to lose energy and developed SOB and gained weight. I had fluid in my lungs, stomach, liver, legs, ankles and neck. In early June I went to the emergency room because of SOB and after an EKG they sent me to a cardiologist who diagnosed my DCM immediately. My echo at that time estimated my EF at 10%. The doctor started me on Lasix, digoxin and Prinivil. I lost 13 lbs of fluid in 4 days and felt much better throughout the end of June and July.
     In August the doctor started me on 3.125mg Coreg twice a day and I had no bad side effects. I even went camping for a weekend in late August. On August 31, I had another echo which showed my EF to still be at about 10%. I had an appointment with my doctor on 9/6 which is when he told me that the initial medications hadn't helped to increase my EF but he was still hopeful that Coreg would increase it. He raised my Coreg to 6.25mg twice a day and also started me on Panax (an anti-depressant) as I am not handling the situation very well.
     He also set up an appointment for me with a heart transplant team for a heart transplant evaluation. I have to admit that I'm not sure if I want to go through with a transplant and I'm wondering if any of you are on the transplant waiting list. Also, is there anyone who has an EF as low as 10% and if so how long has it been since you were diagnosed and started the medications? Thanks for listening to me as I know this was a pretty long message. Patti D.

Jon's September 15 reply to Patti D's September 15, 2000 - Hi Patti, My EF was 13% when diagnosed over 5 years ago. It stayed low for several years but has recently climbed to about 40%. Jon.

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

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