Bert 8-1 how should I exercise?
Jon's 8-1 reply to Bert's 8-1 not enough info to even guess
Tom S' 8-1 reply to Barbara S' 7-31 humidity
Joe S' 8-1 reply to Tom S' 7-31 heat, humidity, and civilization
Frank Smith 8-1 implant research question
Barbara S' 8-1 reply to Tom S' 8-1 humidity 'round here, just trying to help ;-)
Greg B 8-1 does anyone take alpha lipoic acid?
Frank Smith 8-1 different sort of hearts
Mike Joye 8-1 living with CHF, update
Sylvia E 8-1 has anyone had an O2 sat test?
Virginia P's 8-1 reply to Michelle's 7-31 potassium replacement
Mary H 8-1 EF & doctor questions
Beverly C 8-2 Pet scans, doctors' terms & more
Jon's 8-2 reply to Beverly C's 8-2 Pet scans & terms
Ginger's 8-2 reply to Mary H's 8-1 normal EFs & more
Tom S' 8-2 reply to Barbara S' 8-1 heat, humidity, open doors & more
Mike Joye's 8-2 reply to Mary H's 8-1 normal EF
Ben B's 8-2 reply to Mike Joye's 8-2 life expectancy
John Len's 8-2 reply to Tom S' 8-2 attack moms & attic fans
Gail C 8-2 stopping smoking, weather
Jeff M 8-2 my thanks & a support request
Duane C 8-2 does anyone else get this low heart rate? & more
Tom S' 8-3 reply to John Len's 8-2 attic fans and attack mommas
Donna Z's 8-3 reply to Duane C's 8-2 slow heart rates and beta-blockers
Michael Williamson 8-3 intro, great site
Laurie A 8-3 questions about all these terms & more
Jon's 8-3 reply to Laurie A's 8-3 terminology
John Len's 8-3 reply to Tom S' 8-3 scrappers
Walter K 8-5 fluid restriction question
Janie Loyd 8-5 questions from a nurse
Billie Jo 8-5 update, surviving the system questions
Jon's 8-5 reply to Walter K's 8-5 severe fluid restrictions
Jon 8-5 general update
Bill D's 8-5 reply to Walter K's 8-5 severe fluid restrictions
Tom S' 8-6 reply to Walter K's 8-5 slaking thirst
Helen Otis 8-6 update, home page Url
Rosemary F 8-7 update, questions about EF & more
Jeff M 8-7 thank you everyone!
Jeanette's 8-7 reply to Rosemary F's 8-7 measuring EF & more
Jon's 8-7 reply to Rosemary F's 8-7 necessity of knowing EF
Linda's 8-7 reply to Rosemary F's 8-7 taking control, options, coping & more
Susie O 8-7 update, big thank you
Jean C 8-8 to Susie & Jeff
Joe S' 8-8 reply to Linda's 8-7 my experience
Jim T 8-8 update, not doing too well
Sherrell G 8-8 update, rehab question, Coreg dose & more
Jon 8-8 Netscape users beware & more notes
Tom S' 8-8 reply to Linda's 8-7 enlarged hearts
Jon 8-8 topic for discussion by everyone
Jack's 8-8 reply to Jon's 8-8 where do ya get them there browsers?
Jon's 8-8 reply to Jack's 8-8 round here
Frank S' 8-9 reply to Jon's 8-8 sorry about the problems
Barbara F's 8-10 reply to Jon's 8-9 merging message boards
Dave Kriefeldt's 8-10 reply to Teresa's's 8-9 ownership of medical records>
Ginger's 8-10 reply to Jon's 8-9 merging message boards
Donna Z's 8-10 reply to Mike Joye's 8-9 enlarged heart experience
Rosemary F's 8-10 reply to Teresa Pierre's 8-9 getting the right doctor
Claire E's 8-10 reply to Jon's 8-9 coping
Jeanette's 8-10 reply to Teresa Pierre's 8-9 getting the right doctor
Jeanette's 8-10 reply to Jon's 8-9 merging message boards
Ophelia's 8-10 reply to Jon's 8-9 merging message boards
Jim T's 8-10 reply to Jon's 8-9 merging message boards
Tom S 8-10 attitudes
Jon 8-12 catching up
Rick M 8-12 merging message boards
Dora 8-12 questions about test results & more
Bill D's 8-12 reply to Jon's 8-8 merging message boards & more
Jon's 8-12 reply to Bill D's 8-12 merging message boards & more
Sharon P's 8-12 reply to Dick W's 8-9 altitude and CHF
Gail 8-12 intro, insomnia problems & more
Jon's 8-12 reply to Gail's 8-12 insomnia problems
Donna Z's 8-12 reply to Teresa Pierre's 8-9 the right doc, coping with CHF & more
Rieale 8-12 merging message boards
Krista 8-12 question - having siblings checked for familial heart problems
Jon 8-12 pacing for CHF trials
Jim C 8-12 physical therapist seeks advice
Mary Lou L's 8-12 reply to Jon's 8-9 merging message boards
Doug K's 8-12 reply to Jon's 8-9 merging message boards
Bill M's 8-12 reply to Jon's 8-9 merging message boards
Rosemary F's 8-12 reply to Jon's 8-9 merging message boards
Bev T 8-12 vacation over, Coreg pills & prices
Mina Meyer 8-12 wonderful news, beta-blocker really worked
Trish 8-12 work, SSD, lack of work history questions
Sharon P's 8-12 reply to Gail's 8-12 about problems getting to sleep
Frank Smith 8-12 merging message boards
Tom Stocker's 8-12 reply to Bev T's 8-12 Coreg dose versus pill size
Jon's 8-12 reply to Bev T's 8-12 Coreg dose versus pill size
Helen Otis' 8-12 reply to Gail's 8-12 insomnia & CHF
Joy R's 8-12 reply to Gail's 8-12 insomnia & twitchiness
Jon's 8-12 reply to Joy R's 8-12 insomnia, twitchiness & RLS
Karen K 8-12 merging message boards
Ron Ferguson 8-12 monitoring hear rate
Rieale's 8-13 reply to Krista's 8-12 siblings being checked for heart disease too
Diane Paul 8-13 chemo-induced cardiomyopathy - anyone else?
Judy S 8-13 herbal solutions to insomnia
Walter K's 8-13 reply to Tom S' 8-8 living with an enlarged heart
Jon 8-13 another question about merging message boards
Frank Smith's 8-13 reply to Jon's 8-13 merging message boards
Jon's 8-13 reply to Frank Smith's 8-13 merging message boards
Bill D's 8-13 reply to Joy R's 8-12 getting to sleep
Walter K's 8-13 reply to Jon's 8-13 message board arrangements
Pat Y's 8-13 reply to Jon's 8-9 merging message boards
Rosemary F's 8-13 reply to Jon's 8-13 merging message boards
Sherrell G's 8-13 reply to Jon's 8-13 merging message boards
Bev T 8-14 Coreg dose questions
Jon's 8-14 reply to Bev T's 8-14 Coreg dose
Mary H 8-14 exercise, this site, horn tooting & more
Becky's 8-14 reply to Jon's 8-13 merging message boards
Tom W's 8-14 reply to Jon's 8-13 merging message boards
Jean C's 8-14 reply to Joy R's 8-12 getting to sleep, merging message boards
Kathryn C's 8-14 reply to Jon's 8-13 merging message boards
Jeanette's 8-14 reply to Jon's 8-13 merging message boards
Linda's 8-14 reply to Jon's 8-13 merging message boards
Peggy 8-14 cardiolyte stress test after effects question
Bill D's 8-14 reply to Jon's 8-13 archived posts
Billie Jo 8-15 merging message boards
Billie Jo's 8-15 reply to Krista's 8-12 familial (hereditary) cardiomyopathies
Billie Jo's 8-15 reply to Trish's 8-12 working versus staying at home & more
Billie Jo's 8-15 reply to Donna Z's 8-12 SSD struggle, test questions
Jon 8-15 message boards
Jan S 8-15 meds question - Celexa
Ben B's 8-15 reply to Billie Jo's 8-15 working & retraining options
Jon 8-15 hopefully, form works now
Tom S 8-15 the ant and roach invasion
Rieale's 8-15 reply to Billie Jo's 8-15 Ben's idea is a good one
Kathryn's 8-15 reply to Jan S' 8-15 Celexa
Walter K's 8-15 reply to Krista's 8-12 familial heart disease, virus questions
Jon's 8-15 reply to Walter K's 8-15 viruses causing cardiomyopathy
Woodie 8-15 intro, what should I ask my doc?
Billie Jo's 8-15 reply to Ben B's 8-15 thank you, looking at it now
Bert, August 1, 2000 - Hi, I would like to know what exercise program I should be on. email@example.com
Jon's August 1 reply to Bert's August 1, 2000 - Hi Bert, That's kind of like asking us what model car you should buy. Without knowing your driving habits, there's no way for us to know. You'll need to supply more information before anyone can even guess what exercise you need. Jon.
Tom S' August 1 reply to Barbara S' July 31, 2000 - Hi, Too bad I don't have a mountain home I could swap for your seaside villa. I found the humidity a lot easier to deal when I lived on the Florida Gulf Coast because of the ocean breezes, than I did living in the heart of New Orleans or North Carolina without those breezes. In Florida though, the inland humidity and temperatures can vary on any given day because of the moderating effect on temperature of the Atlantic and Gulf of Mexico waters. firstname.lastname@example.org
Joe S' August 1 reply to Tom S' July 31, 2000 - Hi Tom, I moved to California's Eastern Sierras a year ago from a climate with 100% humidity 95% of the time. My health has improved a 1000% until they are now threatening to stop my disability. However, with the climate changes world wide the heat here is setting records with 100-105° days for almost a month but the humidity is only 18-20%. No matter, I still sweat a ton especially after my 2 mile walk every morning. I don't believe that breathing in all the fluids in a high humidity area can possibly be good for someone who has a problem getting rid of fluids. Since my move, even my hands have gotten thinner through lack of fluids, I have lost weight, and my breathing has improved unbelievably. One other great advantage to an area like this is there are virtually no inside bugs like roaches, ants, fleas or ticks. My dogs think they are in heaven. Of course we have mountain lions, coyotes, skunks and the occasional bear, and the nearest grocery store and bank are 30 miles away. I'll sacrifice convenience though, for how healthy I am now. Joe S. email@example.com
Jon's note: fleas and ticks are "indoors" critters? <g>
Frank Smith, August 1, 2000 - Hello to everyone, My thanks to Donna Z's post of 7/31. I was somewhat encouraged about the latest news concerning an LVAD implanted in a human in Israel. I believe there are many people who visit this site who, for whatever reason, will not qualify for a heart transplant. Since I am one of those people, the cutting edge technology of permanent implantable systems could be the only answer to continued mortality. My question to Jon, or anyone else is, "Are there places which we can access to get the latest data (and the more intimate, the better) on the progress of this life-saving technology, since the usual sources are very vague and leave a lot of questions unanswered?" Later, Frank Smith. firstname.lastname@example.org
Jon's note: write the researchers running the trials
Barbara S' August 1 reply to Tom S' August 1, 2000 - Hi Tom, I am sorry if I wrote my e-mail to imply that I had a home on the ocean. I live on the mainland between two rivers about 10 miles away from the ocean. People suffer with allergies and it is harder to breathe due to the high humidity. Weathermen interpret the heat as being over a 100° even though the temperature is 90°. I really do not know what you can do if you don't have air conditioning, but I just shared what I try to do to be comfortable with humid conditions. If there are any other suggestions, I am open to them. Chnabby@aol.com
Greg B, August 1, 2000 - Hi, Does anyone use, or has heard of, Alpha-Lopic Acid? MRI (Medical Research Institute) puts it out under the name of Glucotize. It is supposed to be helpful in diabetes. I would like to know if anyone uses any lipoic acid supplements? email@example.com
Frank Smith, August 1, 2000 - Hello to all, If I may, I would like to digress a bit from affairs of the heart to affairs of the game of hearts. Since I started computing about 1 1/2 years ago, I have been told about web sites which allow one to play with real people instead of computers, however I have also heard of private sites, perhaps like a club, where you can find live humans who love just to compete with one another, just for the love of the game. Since I believe that I am competitive, I would appreciate knowing if such places exist on the Net. Thanks, Frank Smith. firstname.lastname@example.org.
Mike Joye, August 1, 2000 - Hi Jon, I just wanted to say that I appreciate your site and I am doing pretty well. I had a long talk with both my regular doctor and my cardiologist about DCM and life expectancy. I played golf in 95° temperature with him and found out a lot. Everyone is different and even though my echo shows 35% and my cath shows 42%, I am somewhere around those two. I have no blockage and am able to work and play golf and work in the yard. Both doctors give me a 85% chance of living 15 years if my EF remains constant. They think I will remain stable but I know the possibility always exists that may not happen. I appreciate all the posts and all the info on this site. God bless all of you! email@example.com
Sylvia E, August 1, 2000 - Hi everyone, Can anyone explain to me what an O2 Sat (saturation) test involves. I am required to have one to satisfy my HMO that I need oxygen to travel across the Rockies. Both my CHF doctor and my family care doctor have stated that I need to be on oxygen to withstand the high altitude. I live at sea-level so how will this test be able to tell how my body will react at 6000 feet? I know this test is performed in the hospital, but nothing else about it. Is it painful? Is it dangerous? Thanks for your help. Sylvia E. firstname.lastname@example.org
Virginia P's August 1 reply to Michelle's July 31, 2000 - Hi Michelle, I am now taking 60 mEq K-Dur in the morning, 40 mEq at noon and another 60 mEq in the evening. I also take Quinamm Sulfate for cramping muscles. Virginia. email@example.com
Mary H, August 1, 2000 - Hi, Does anyone know what the EF rate of a healthy heart should be? My doc says that 50% is near-normal. He stated that after all, a heart is a pump and there isn't any type of pump that works at 100%. Am I correct in thinking that doesn't sound right? This is the same doc that says I should be able to do anything I did before I had my run-in with DCM. Is it time to find a new doc? Mary. M123_@excite.com
Beverly C, August 2, 2000 - Hi, Does anyone know the definitions of all the "grades" of conditions, like good, fair, stable, guarded, critical and any other I have left out? I cannot find it anywhere. Also, is there a location that I have overlooked that explains a PET scan on this site? After waiting 7 weeks to see my new doctor (yesterday), I found out nothing. He does not want to use the interpretation of another doctor, he wants to re-do the CardioLite Study and echo. I can understand that, but I have to wait 10 more days for the test. Then it take another week to see him for the results. It is just so hard to wait and then wait more. Good luck To everyone, Beverly C. firstname.lastname@example.org
Jon's August 2 reply to Beverly C's August 2, 2000 - Hi Beverly, You can find a doctor griping about the loose ways those "grades" are thrown around in the article at the bottom of the echo page. Basically, those words mean whatever that doctor wants them to mean at that particular time. There is no "standard" behind such words, and it'a major problem in cardiology today. Heart classes, however, are well defined. Read this. There's no info about Pet scans here. If I ever have one, there will be. <g> Jon.
Ginger's August 2 reply to Mary H's August 1, 2000 - Hi Mary, I have been led to believe that a normal EF is anywhere between 50 and 65. Mine usually comes out at 53 to 56 every time. They tell me that is considered a normal EF; too bad I don't feel normal with that EF. ;-) Tired is a way of life for me, especially lately. I hope this helps. By the way, I lied about catching up on my e-mail; I still haven't but I will. It's just gonna take a little time. Sorry. Stay well, ya'll. Hugs and prayers, Ginger. email@example.com
Tom S' August 2 reply to Barbara S' August 1, 2000 - Hi Barbara, Having lived in the Sarasota/Bradenton area of Florida, I am familiar with the wide ranges of temperatures and climate conditions that exist in the state at any one moment. While coastal temperatures are usually moderated by the Atlantic Ocean or Gulf of Mexico, that can drastically change within a couple of miles. As one who worked outdoors for a large portion of my time in that state, the one thing I remember is how oppressive the temperatures and humidity became only a couple of miles inland. Air conditioning is a must in Florida whether it be in your home or car there are two ways around it.
The only time I really have a problem here in North Carolina is during the day. Nights here are typically a lot cooler than the days so if I can weather the daytime, by napping or just vegetating in front of this computer, we usually can make it without air. The kids are so acclimated to hot and humid weather than they don't seem to mind the heat at all. We used to keep our doors open here, but we are in one of those older inner city "transitional" neighborhoods. After my wife and I were attacked last week on our porch by a 16 year old 300lb female juvenile delinquent for trying to protect our 6 year old son and 10 year old daughter, leaving the doors open is no longer an option. Fortunately, my wife is a product of the streets herself and despite her 40 plus years, she managed to throw the girl off the porch - twice - before other neighbors came to the rescue, including members of her own family.
Anyway, I always appreciate all the comments and comradeship I feel in this forum and in no way was I attempting to demean what you had to add to the humidity thread. firstname.lastname@example.org
Mike Joye's August 2 reply to Mary H's August 1, 2000 - Hi Mary, Jon is the expert , but both my doctors tell me that 50 to 55% is normal and anything above that is just gravy. I have an EF of 42% by cath and can do anything I want after my bout with DCM. Good luck to you. It sounds like your doctor is accurate on this. Have a great day, Mike. email@example.com
Ben B's August 2 reply to Mike Joye's August 2, 2000 - Hi Mike, I am glad to hear you are doing so well, and also that you have a doctor who has given you a thoughtful, realistic response about life expectancy instead of parroting a decade-old "five year" statistic that is usually wrong. However, I was sort of laughing at the way he put it: If your EF stays at 35 to 45%, you have an 85% chance of survival. I would think if your EF stays at that level, you have a 100% chance of survival, since most corpses have an EF of, oh, around 0%. <lol> firstname.lastname@example.org
John Len's August 2 reply to Tom S' August 2, 2000 - Hi Tom, And I thought my sainted old mother - from North carolina, naturally - was the only one capable of doing that, protecting her kids when we were growing up. North Carolina back in the 40s and early 50s was not the only state with rough neighborhoods. The roughest ones came to Berkley (now part of Norfolk), Virginia. ;-)
If you own the home, I have a solution to the heat. When I was a contractor, I used to install ceiling fans in a lot of homes. Now these were attic fans that went into the celings and sucked the air off the ceiling into the attic. An added bonus was it put a positive pressure in the attic, forcing out the hot attic air under the roof. I even installed a couple in houses built with two wings on either side of the central part of the house and you could feel the flow in the opposite rear end of the building. It works. email@example.com
Gail C, August 2, 2000 - Hi, I usually don't toot my own horn but today is an exception. I celebrated my one year anniversary of being smoke-free. For those of you who have tried and failed, don't quit quitting and take a moment to read Jon's page on smoking. I thank the Lord for making this possible, and He can help you too if you ask.
Just a little note about hot weather: I live in Orlando and it is horrible this time of year. The extreme heat and humidity make me sick to my stomach and cause breathing problems. It was twice as bad when we had all those wildfires last month, so hopefully we will be able to move within the next few years. I can't wait to get closer to the mountains. God bless, Gail. Gailie2253@aol.com
Jeff M, August 2, 2000 - Hi everyone, I asked Jon to send out a prayer request the other day for a friend of mine named Archie. He is in the hospital in Iowa City with an LVAD and an RVAD. When I asked Jon to send that prayer request, Archie was not expected to make it through the night. He is still ticking, folks. I visited him yesterday and he seems to be doing better. The doc told me that he is not out of the woods yet but he is doing much better. The prayers are working. Thank you, everyone! This is a spiritually uplifting experience for me. I hope I worded that correctly. ;-)
Now I want to ask another favor from the group. I told Arch that I was praying for him and that I had the world praying for him also. I want to give him a special gift next time I visit him. So if you could all e-mail me a quick note that I can copy and take in to the hospital for Archie to read I would greatly appreciate it and I am sure Arch will too. Please e-mail them messages for Archie to firstname.lastname@example.org. By the way, I have an LVAD keeping me ticking until transplant also. Thanks a million! Jeff Mecham. email@example.com
Duane C, August 2, 2000 - Hi, I ended up back in the hospital 2 weeks ago. I felt like I couldn't breathe and I was vomiting. In the room when I was tied to the monitor, my lack of breath corresponded with a slow heart beat, as low as 31bpm. I got all the usual tests and they didn't find anything. My EF is now up to 52, but I don't have any more go. I had just been home a few days from vacation when this struck so a lot of it may have been me being tired from the trip. I wonder if anyone else gets these low heart rates? Duane C. firstname.lastname@example.org
Tom S' August 3 reply to John Len's August 2, 2000 - Hi John, I have to agree with you that big old attic fans are marvelous air movers and I would love to have one again. The "important" rooms in our house all have ceiling fans. I am limited as to what I can do, so I had to pay someone to do it when we first moved into this big ole house (3,350 square feet). At one time there was one of those marvelous attic fans that used to suck all the hot air out through the attic and ultimately out of the house, but about 10 years ago a little hurricane by the name of Hugo took it, along with the entire roof and second story ceilings. After that, all the new ceilings were dropped from 10 fee to 8 feet and as far as we know, the old attic fan and old roof are in Kansas with Dorothy and Toto. As far as my sainted wife, she was born in Fort Knox, Kentucky, so she is good as gold. She was raised all over the world so she is a pretty tough gal, but tender at all the right moments. It's been a great 24 years with her. email@example.com
Donna Z's August 3 reply to Duane C's August 2, 2000 - Hi Duane, My heart slowed down to 42 beats per minute while on 50mg of Coreg. My doctor stopped my drugs for that day and then started me back on 12.5mg Coreg twice a day. Now my heart rate is back to normal. I had been on 50mg Coreg for quite awhile before this happened to me, so just because you may have been fine on it for awhile doesn't mean the dose might be too high for you. Please check it out with your doctor. Donna. firstname.lastname@example.org
Michael Williamson, August 3, 2000 - Hi, I am a 35 year old male who has recently been told that I have CHF. When I got out of the hospital, I really didn't know very much about CHF so this site has helped me find out more about CHF. While in the hospital they implanted an ICD so this has been a very scary experience for me and my family. This site has been great. Thanks for the information. It has helped a lot. email@example.com
Laurie A, August 3, 2000 - Hi again, First, I love your site. It is of tremendous help and support! My question is, "What exactly is biventricular failure, and what is the mortality rate for it?" Is this just another term for CHF or is it a part of it? How does this fall into the category for dilated idiopathic cardiomyopathy? I am just trying to understand all these diseases. Thanks. Sarg0911@aol.com
Jon's August 3 reply to Laurie A's August 3, 2000 - Hi Laurie, Biventricular means that it affects both ventricles, so rather than having just left ventricular failure, both of your ventricles (the lower, larger pumping chambers of your heart) are weak. Mortality rates are notoriously unreliable for CHF, period, and there are no estimates on death rates for subgroups, like those with both ventricles affected.
Dilated means that your heart is enlarged. Idiopathic means "cause unknown." So the doctors don't know what caused your cardiomyopathy. Cardiomyopathy means "heart disease." It's a very general term. Your cardiomyopathy caused your CHF (heart failure). CHF is an assortment of symptoms that occur when your heart is too weak to meet your body's demand for blood circulation. CHF is not a disease in itself. You can read about all this and much more at The Manual. Jon.
John Len's August 3 reply to Tom S' August 3, 2000 - Hi Tom, Dear old sainted mother from North Carolina was born in a farmhouse weighting in at 1 1/2 lbs; No hospital. She lived to be 67 years old. The local old-timers couldn't get it straight as to why she was called scrapp. Was it because she was a little scrap of a kid when born, or because she was the top scrapper in the schoolyard as a teenager? ;-) firstname.lastname@example.org
Walter K, August 5, 2000 - Hi, I am on the usual restriction to no more than 2 liters fluid intake per day. I find that my usual intake, counting everything, is more like 1 1/4 liters, way under the allowance. Does anyone know if there is a benefit to being under the allowance? I am thirsty most of the time (I don't have diabetes) but nothing intolerable. If there is a benefit, I'll stay like I am. If not, I might as well drink more to reach the 2 liters. I will ask my doc when I see him, but that won't be for awhile and this is hardly an emergency. In the meantime, what is the consensus? email@example.com
Janie Loyd, August 5, 2000 - Hello there, My name is Janie Loyd. I am a critical care nurse who has stepped into the role of patient educator and my primary specialty is CHF. I would love to know what type of education you have received since you were diagnosed. I have an inpatient education regimen, in which I go through survival skills, but we are wanting to start an outpatient class in which we can do some extra education to help those with CHF learn to live with it. I would love to hear about your conditions and what has helped you most. From the posts I read, you all have a great handle on your heart failure. I would love to hear from you. Janie Loyd, RN, Sumner Regional Medical Center. firstname.lastname@example.org
Billie Jo, August 5, 2000 - Hi, I haven't posted for awhile so here's a quick update: My EF is 30%, and I have DCM and CHF as of 12/99. I started out with an EF of 10% and a greatly enlarged heart. I was told that I would need a transplant to survive! My EF rose to 25%, 35%, and in June to 45%. I am taking 25mg Coreg, 0.125mg Lanoxin, 80mg furosemide, 15mg zestril, and 40mg potassium. I also take a "Nutrient Stew" of CoQ10, selenium, thiamin, vitamins C and E, L-carnitine, calcium and a multi-vitamin. I am on a 1000mg sodium per day diet and at least 20 minutes of walking 3-4 times a week. I am not always consistent on my diet and exercise. I have only done physical labor-type jobs. My doctor doesn't want me working but I have been turned down twice for SSI, despite my doctor's convincing letters. I told him about this site's SSD page. My EF continues to rise and my heart has returned to nearly normal size so they claim my condition will not remain severe enough for 12 consecutive months, making me ineligible.
Yet as my EF rises, my doctor raises the medications which rob me of my energy and concentration; cause lightheadness and you name it,. Still, compared to other people's stories, I am tolerating the meds well. The only tests I've had done are an echocardiogram every 3 months. My questions are:
I'm kind of in a Catch-22. Most days I feel okay. SSA is probably right that I could perform a desk-type job but the problem is that I don't know how! I live in an area (Seattle) where desk jobs are a-plenty but are very hard to land even for experienced people, much less for someone with a heart condition needing on the job training. I don't have the money to go to school and you only qualify for state-funded employment retraining school if you are on Disability!
My only medical help is DSHS (welfare) and if I should happen to land a good desk job that includes on the job training, my income will go up and DSHS will cut my medical. Most insurance plans through employment will not cover pre-existing conditions and don't kick in untill you've been on the job 3 to 6 months! Some, like my last job, don't kick in till 18 monthes. I can't just go off my meds until benefits kick in! So it seems the only logical way to survive and feed me and my 3 kids and continue to take care of my health is to qualify for SSI, yet according to their standards I don't qualify. Still, I sure wouldn't want my health to backslide just to meet their standards. Thank you in advance for any advice. Billie Jo. email@example.com
Jon's August 5 reply to Walter K's August 5, 2000 - Hi Walter, As far as I know, there is no benefit to severely reduced fluid intake unless your heart gets much weaker than it is now. Fluid restrictions for inpatients waiting for a donor heart can be as low as half a liter per day but for those of us able to walk and act somewhat normally, there's no benefit to it. Jon.
Jon, August 5, 2000 - Hi everyone, This is just a general update. Starting Tuesday, I will have full use of my firstname.lastname@example.org e-mail address! It turned out to be a special Prodigy ISP filter to reduce the possibility of multiple accounts being used to spam. They are removing me from their filter list since they don't think I am a spam risk. ;-)
I am making some rather extreme changes in the way I make my pages. If I do it right, no one should notice. <g> However, if you start having problems viewing my pages for any reason or if you have problems using the pages (non-functional links, etc,...), please e-mail me immediately with a description of the problem, so I can correct my methods. Jon.
Bill D's August 5 reply to Walter K's August 5, 2000 - Hi Walter, I too wasn't drinking my 2 liter allowance. I wasn't thirsty either, so I figured it was alright. Now I know it isn't. As time went on I was getting more and more constipated. I needed that water to get loose stools. Now I'm in big trouble! Bill D. email@example.com
Tom S' August 6 reply to Walter K's August 5, 2000 - Hi Walter, This may seem to get repetitive and I know I have posted this suggestion before, but I rely pretty heavily on crushed ice or ice cubes as a thirst quencher for most of my fluid intake during the day. I am not certain what the total volume of fluid intake is, but judging by the output it is probably close to the vaunted 2 liter intake recommendation. I keep an insulated type plastic jug with me almost all the time, filled with chipped or cubed ice (store-bought 7-8lb bags) and I go through a bag about every 2 days. I even carry it in the van if we are going out for any length of time. I refill it at a fast food place if necessary, while we are out. For the kids' sporting events, I carry a larger ice filled container. Generally 8lb of water translates as approximately one fluid gallon but I do not drink the ice that melts so the actual fluid intake is much less during these hot summer days and nights. Having ice in the mouth did take some getting used to but it was the only thing they would give me in the hospital to slake a raging thirst. It worked so well that I just continued using the ice method well after I left the hospital. If you want a little flavor, squeeze a half of lemon or lime (or both) over the ice. firstname.lastname@example.org
Helen Otis, August 6, 2000 - Hi all, I haven't posted in awhile because I have been trying very hard to live a half-way "normal" life this summer. My cardiologist allowed me to camp with the American Cancer Society for their week-long camp for kids who have had, or currently have, cancer. It was one of the best weeks of my life, and it only took me about 10 days after camp to recover. It was more than worth it for me. I had forgetten how inspiring and uplifting it is to be around those extraordinary people - campers and staff alike.
I did manage to setup my home page. It still needs work in my opinion but for now it works. The address is http://home.att.net/~haotis/web_page.htm. This has all my current med info and pics of Patrick and me, and a family photo of Patrick and his family. Stay healthy all. Helen Otis, age 26, EF 25%-30%. email@example.com
Rosemary F, August 7, 2000 - Hi, I am relatively new to Jon's Place (late June), so I don't know a lot of the fine points of CHF. I live in a small town and have a knowledgable family doctor. He first diagnosed me with with CHF, then referred me to a heart specialist in Wichita who did the usual basic tests. The specialist thought he detected some stiffness of my heart muscle and possibly some blockage in an artery behind the heart. He then did a heart cath at the Heart Hospital in Wichita and found neither. Personally, I am convinced that was because of the volume of prayer going up for me from my Christian family and friends.
My CHF was due to a long-term (mid-1980s) idiopathic rapid heart rate problem. It had been slowed to some extent by medication but not the right kind or right strength to fully bring the rate to normal. My pulse would be above 100 practically all the time. Finally I began to have all the classic symptoms of CHF. I am now on furosemide (Lasix), Lanoxin and Diltiazem for the condition, which keeps the beat strong, the rate mostly normal, and my edema controlled. I am under the care of just my family doctor and things seem to be going pretty well. I know you feel strongly about having a CHF specialist. However, I seem to have no actual heart disease as such. I lost 45 pounds after being diagnosed and now weigh 148, not bad for my frame.
I have been reading archived posts today and picked up some interesting info. I hadn't known whether CHF was considered constant or not. That is, did I have CHF all the time or just when I was having symptoms? I learned about compensated CHF and decompensated, and realize I have the former. I have had problems when I've had too much sodium or too much fluid during a day.
What I would like to know is, what kind of tests do you take to learn about changes in your EF? I don't even know what mine was when I had the heart cath. How important is it for me to know my EF? I also had a diagnosis of type 2 diabetes shortly after my CHF diagnosis. I was on a low carbohydrate diet for some weeks for that but since losing weight, my blood glucose has been very normal for months now on just a regular diet. I never had to take insulin or pills. Thanks for any help you can give me. Rosemary F. firstname.lastname@example.org
Jeff M, August 7, 2000 - Hi, It is Jeff again. I want to thank everyone for the messages you sent and the prayers for Archie. I will be taking them to him on Thursday. I got an amazing response from you all and they are still coming. It is great to have a support group like this. Special thanks to you, Jon, for all the hard work you put into this web site for us all. God Bless you all! email@example.com
Jeanette's August 7 reply to Rosemary F's August 7, 2000 - Hi Rosemary, To find out if your EF has changed or just to find out what it is, you can have a MUGA done. Jon's test pages will tell you what a MUGA is and also about other tests to help you understand what you have had or will have done. Jon is excellent in telling you exactly what you can expect to happen when you go for the tests. He has had many done and can tell you more. It is an effective way to find out what your EF is. If you have any questions, talk to Jon or you can e-mail me. Good luck and God bless, Jeanette. firstname.lastname@example.org
Jon's August 7 reply to Rosemary F's August 7, 2000 - Hi Rosemary, It really depends on several factors as to whether you need to know your own EF. Your personality is one such factor. Some people would not feel comfortable trusting a doctor to such an extent that they don't even know their own "numbers." Other people would only worry too much if they had a low EF and knew about it, even if they felt great. For those people, maybe they shouldn't know. Of course, how much you trust your doctor is a factor also. I would never trust any doctor that much simply because doctors are people too and people are capable of making mistakes. However, again, some people woud be more comfortable leaving it in their doctor's hands. You'll need to be honest with yourself and decide the need to know for yourself. Jon.
Linda's August 7 reply to Rosemary's August 7, 2000 - Hi Rosemary, My CHF was first diagnosed by my regular physician. I had an EF of less than 15% and I couldn't breathe. My heart was enlarged. She told me that my prognosis was poor but sent me on the spot to a cardiologist. I went on Lanoxin and Lasix for a couple of months, then just Lanoxin. In less than a year, my EF was 60% and my heart was normal size. I was taken off all meds.
When I went back for my 6-month checkup, my EF was back down to 23%. I had a cath, which showed no problems at all. Then a more detailed stress echo finally revealed that I have diastolic dysfunction. Taking just the digoxin completely covered it up. My left ventricle does not relax enough to accept blood from the lungs but it contracts fine. Not enough blood is pumped out as a result and it can back up and cause CHF. I went on Coreg for a year and my LV has lost some of its stiffness. Not being able to tolerate it, I am now on digoxin for a few months until we decide what to do next. My doctor is going to a big heart convention in November and hopes to get some input there.
I believe that it is vitally important to see a CHF specialist. They know exactly what to watch for, what drugs are available, new treatments, etc. By the way, Lanoxin just makes your heart beat stronger; it does nothing to make it better. Get a CHF doc, read this web site thoroughly, and learn as much as you can about this illness. Take control of your own life and ask your doctor lots of questions. Good luck! email@example.com
Susie O, August 7, 2000 - Thank you for your prayers and kind notes of encouragement. My brother-in-law arrived home tonight from the hospital to the news that their oldest daughter had a baby girl this evening (in Germany). Also, my stepson's two daughters came home tonight. What a way to spend the day - getting good news on top of good news. Thanks again. firstname.lastname@example.org
Jean C, August 7, 2000 - Hi Susie, It's great to hear good news for your family! Jeff, we're pulling for Archie and you're a good friend to encourage him. Has anyone heard any updates on 8 year old Billy? On EF, the last I heard, mine was between 30% and 40% but with this summer humidity making breathing so tiring, I feel like one of those parade balloons about to burst. Jon, I sure know what you mean about a higher EF not necessarily translating into feeling better. I hope everyone has a good August! Jean C. email@example.com
Joe S' August 8 reply to Linda's August 7, 2000 - Hi Linda, I have had an enlarged heart for 56 years now with few problems until 2 years ago when everything hit the fan. Now everything seems back to normal again and I attribute this to moving to a high dry climate, 3 mile walks and eating right. When I was younger the docs told me my heart enlarged to compensate for my murmer. Then it was a good thing, now it is a bad thing. Go figure. Joe S. firstname.lastname@example.org
Jim T, August 8, 2000 - Hi, It has not been too good a summer for me. The heat and humidity are not my best time. I have been hurting in the heart whenever I do much, not angina. I had an angioplasty about 3 months ago and they couldn't put in a stent, as my heart starting acting up, and the vein looked like an inchworm, the doctor said. I don't know what an inchworm looks like but whatever! Next Monday I get a persantine stress test to see what's going on. I get this kind of test because my legs don't do too good and I am on a cane. They are seeing if a stent is possible. I am getting a little tired of all this but I guess they know what they are doing. I keep praying for all over you, and God bless! Jim T. email@example.com
Sherrell G, August 8, 2000 - Hi, I started a round of cardiac rehab 3 weeks ago, going 3 times a week. One session I do well and the next I do horribly as far as the time I can walk. I am only walking on the treadmill around 1.2 miles per hour, anywhere from 10-25 minutes at this point and then 5-15 minutes on the arm cycle. It is comforting to be on the heart monitor while I am doing this, though. Also, on several occasions I seem to be doing fine according to the heart monitor but my O2 sat level drops to the low 90s and I then get very nauseated. After resting for a few minutes I feel fine again. Has anyone else experienced this problem?
Also, my Coreg dosage has slowly been increased to 50mg twice a day on the recommendation to my cardiologist from the EP doc taking care of my ICD. I have had no major problems since the increase began almost 3 months ago. When the medication peaks, my BP is in the low 80's over 40s-50s and my pulse is in the low 40s but then it levels off without any lightheadedness. I have had some short-term memory problems but don't know for certain if Coreg is the culprit. I'm keeping a chart to show the doctor at my next check-up. firstname.lastname@example.org
Jon, August 8, 2000 - Hi everyone, Just a couple of notes. First, I want to warn everyone using Netscape about the latest security hole in it. It's very serious. You can have your hard drive accessed in any way a hacker chooses without doing anything but viewing a web page. This is more serious than any browser security hole I have ever seen, because you don't have to do anything but view a page to get hammered. You should immediately turn off all Java support if you use a Netscape browser of any kind. I got this from today's Wall Street Journal.
Also, it seems that Netscape of certain versions has a problem with my server's PHP forms script. I am working on this but am not sure I will get it licked, although it won't be for lack of trying. If you cannot post, please let me know what browser and version you are using since I can use that info to help pinpoint the problem and a possible solution! (reader messages about site problems have already led to me fixing several pages - my thanks, guys!) Also, send me your post via e-mail and let me know it's to be posted to The Beat Goes On and I'll get it posted for you pronto.
Netscape users and users of version 2 to version 3 browsers may see some parts of my pages now over on the left or not very well aligned anymore. That is from me switching to heavy use of the year-old style sheet specs for page layout (CSS 1), which is now the proper way to lay out web pages instead of using just HTML. I also upgraded to HTML 4 from HTML 3.2. However, I am going back and degrading certain things to make everything work for as many people as possible (like the links at the top of this page <g>), so I really do need to know about any problems you see on my pages. Remember, I'm just a retired cabinetmaker and I can't make it work without your help! Jon.
Tom S' August 8 reply to Linda's August 7, 2000 - Hi, An enlarged heart does not necessarily equate with an enlarged and weakened heart. There are plenty of stories floating around about folks who have lived into their 80s and 90s with enlarged hearts and those anectdotes are sometimes misleading. A parallel misconception, by way of example, are low birth-weight babies and premature babies. A baby can be born at full term and be of a low birth weight but because they are full term (nine months) all the body parts function very near to normal. A premature infant on the other hand does not have all the parts in place or parts such as lungs and hearts that function as well as full-term baby so they have a great deal of difficulty and until recently, very low birth-weight preemies below 3 lbs usually died. An enlarged heart will mean a certain amount of diminished capacity but does not equate to the same degree of a CHF patient whose heart has been damaged by disease, drugs, or alcohol. email@example.com
Jon, August 8, 2000 - Hi everyone, I'm throwing this one out for discussion. If you want to comment but not openly, feel free to send me your thoughts by e-mail. I keep e-mail confidential. I am considering going back to the format I started out with on The Beat Goes On - namely, one message board for everyone - CHFers and caregivers and loved ones alike. What do you think? Advantages? Drawbacks? Jon.
Jack's August 8 reply to Jon's August 8, 2000 - Hey Jon, How about a link to newer browsers for the cyberly-impaired? Jack. firstname.lastname@example.org
Jon's August 8 reply to Jack's August 8, 2000 - Okey-dokey:
Barbara F's August 10 reply to Jon's August 9, 2000 - Hi Jon, Please do with the format what is easiest for you. I personally would like to see all the message boards combined as I do believe that we can all use the questions and answers from The Beat Goes On plus the caregivers. I usually only read "The Beat" yet know that there are importants points made by caregivers. You put so much into this heart forum and we all appreciate your effort in trying to make it better and easier to get the info out there. Our deepest appreciation, Barbara F. Bfletch@ivic.net
Dave Kreifeldt's August 10 reply to Teresa's August 9, 2000 - Hi folks, Jon is correct. Medical records are the property of the patient. The doctor or hospital keeps them as a fiduciary, akin to the bank holding your money. They have to give it to you if asked, good ole Dave. email@example.com
Ginger's August 10 reply to Jon's August 9, 2000 - Hiya Jon, I think it would be a good idea to merge the two boards, mainly because I know, I for one forget to go to the other side lots of times to see if I can help there. Our memories just are not what they used to be; at least my short-term memory is not. But then maybe I am just dimwitted. <g> Also, considering the loved ones are dealing with us, I would think maybe our input could help them if we just remembered to go there. That is just my opinion. Stay well, ya'll. Hugs and prayers, Ginger. firstname.lastname@example.org
Donna Z's August 10 reply to Mike Joye's August 9, 2000 - Hi Mike, Four years ago I was diagnosed with an enlarged heart. The doctor did nothing at the time other than putting me on Zestril for my blood pressure. A year ago this July, I went into CHF and was after two months diagnosed with IDCM/CHF and was in a very bad way. When I told this to my transplant doctor the look on her face told me a lot. Now I did walk every day at least a mile or two, but was in no way what one would consider a true athlete. I have never smoked or really drank except on special occasions, I had no blockages and all my blood work was perfect (cholesterol and triglycerides). In fact, my PCP told me that most people would kill for my numbers.
From my understanding, a true athlete who has an enlarged heart also has a very slow heart rate, which is making the heart beat slower and stronger, as opposed to a person like myself who had a enlarged heart and a heart rate of 120 beats per minute. I'm not saying for sure the enlarged heart put me in CHF but it sure didn't help. Maybe, just maybe, if I would have gotten proper care when it first showed up I wouldn't be where I am today.
I also have to point out that my maternal grandmother plus my mother and her 3 sisters and a brother all had heart problems. At least three that we know about for sure died of CHF. My mother was in her late seventies when diagnosed but her siblings were mostly in their late fifties or early sixties. So when I went to my PCP I was very concerned about heart problems and he blew me off. Could it be because I'm a woman? When I first got sick I went for a physical and specifically asked about heart problems because my mother had just passed away from CHF, so I was very aware that it ran in my family and I still did not get the proper care I should have recieved. If I could do it over again, I would run to a good cardiologist for an echo and some answers and proper treatment if told I had a enlarged heart. I truly feel proper treatment and management is the key. You know the old saying about an ounce of prevention. Donna. email@example.com
Rosemary F's August 10 reply to Teresa Pierre's August 9, 2000 - Hi Teresa, I urge you to get another doctor who will really cooperate with you. I changed doctors last year for that reason and my new primary physician is very open and helpful. I know it isn't always easy, particularly if a person lives in a small town. I live in a town of 3000 with a limited number of doctors but am very pleased with my new one.
However, because of the info and encouragement on Jon's site, I have decided to find a CHF specialist. I can see that no matter how knowledgable and efficient a primary care doctor is, and mine is, he can't keep up with all that's going on in a special field like CHF. There is no need to put up with the kind of treatment you're getting Teresa, on top of your real concerns about your CHF. Rosemary F. firstname.lastname@example.org
Claire E's August 10 reply to Jon's August 9, 2000 - Hi Jon, I'm a faithful "in the wings" follower. I'm usually too shy to comment on the board but I feel brave today. The old squash must be getting more O2 than usual for some reason or another. On maintaining a good attitude and not dwelling on the negative, I try very hard to stay "up" and am usually quite successful but like all of us, I have my pity party days. I am 38 with 2 little ones who keep me going and keep me laughing an awful lot! I do get very frustrated when I am too tired to romp in a modified CHF sort of way or when even reading "Green Eggs and Ham" at it's proper tone and speed have me huffing. That book cracks me up so much I start wheezing on a good day. I am a critical care RN (nice irony, huh?) so I have a good understanding of my disease, pathology and meds. It is actually a blessing since it alleviates a lot of my anxiety and allows me to be very aggressive in my own care and with my MD, the poor goober!
One of my biggest problems is learning to pace myself. Even after 2 1/2 years, I still tend to get "greedy" on a good day and overdo it. I have always been a bit of a "spaz" and to this day, even with all my mellowing cardiac meds, I have too much ambition. My poor mind is light years ahead of my body. Does anybody else suffer from this? This is not a constant state of affairs by any means. I have my total lack of ambition some days like all of us. I just wish I could learn to cool it a bit on my good days so I won't be trashed afterwards! Any ideas? Jon, you and your site are the best! I laugh and cry when I read it. Peace and love, Claire. email@example.com
Jeanette's August 10 reply to Teresa Pierre's August 9, 2000 - Hi Theresa, If I were you, I would find a doctor who is a CHF specialist if possible. There shouldn't be any reason why your doctor can't give you your EF level unless he doesn't know it! Then, I would definitely get another doctor. I have an EF of 20% and my cardiologist always lets me know what it is when I have my yearly tests done. Get a second opinion. It's your life and your life depends on it. You have the right to know everything about your condition because this is your life in their hands. Let me know how you do. Take care, Jeanette. firstname.lastname@example.org
Jeanette's August 10 reply to Jon's August 9, 2000 - Hi Jon, I think it would be a great idea. Everyone who visits us here in the forum would see how the other half deals with CHF. I check both sites every day but some don't and that would benefit those who don't. Great idea, good luck with it. Always praying for all of you, Jeanette. email@example.com
Ophelia's August 10 reply to Jon's August 9, 2000 - Hi Jon, I am in favour of merging the boards, since it would help caregivers understand what CHFers go through, to give them clarity. Some of the questions they pose would not be as frequent if they just read what we were experiencing. It would also help us CHFers to know what our loved ones are concerned about (in general). Besides, some of us read "the other side" now and again. firstname.lastname@example.org
Jim T's August 10 reply to Jon's August 9, 2000 - Hi Jon, I vote for putting them together, if that doesn't put more work on you! I feel the "other side" group would feel more like they are part of our group. Living with someone who has CHF is almost like having it yourself. The worry and questions are part of their lives too. All the questions and answers that are put in each message board help us all. I read both boards every day and get much from both, thanks to you Jon, and the Lord giving you the strength to do this. So count a "yes" for me. Jim T. email@example.com
Tom S, August 10, 2000 - Hi, As a columnist for a local newspaper I have an opportunity that many people do not have to share my life experiences and thoughts with others. This particular column was written after I read a number of posts on this forum concerning our own mortality and how it affects some of the folks that visit here. It seems we have returned to that topic with a recent series of posts so I am offering this column to inject my thoughts on the topic.
(Jon's note: I am referring everyone to a previous post of Tom's due to lack of time on my part. Same message!) - read this post
Carol W, August 10, 2000 - Hello to everyone, Because everyone seems to be feeling up, I thought I would add my situation and say that I am celebrating today. Today is one year since my last hospital stay. After about 3 years of dealing with CHF, I am still dealing with it every day but I do feel that with a good specialist, following her instructions on resting and exercising, I feel pretty well and am confident about the future. May you all have good days also. Praise the Lord, Carol W. firstname.lastname@example.org
Jon, August 12, 2000 - Hi guys, One of my applications died Thurdsday afternoon and took my Windows with it, so I had to format my hard drive and start over. I'll be back full-force tomorrow but it may take a day or two to catch up on all the posts and on my e-mail. Jon.
Rick M, August 12, 2000 - Hi, I am very much against merging the two boards, so much so that I would like to recommend that we go to 3 boards: one for those who have CHF, one for those whose loved ones have CHF, and one for lonely folks who just need a place to hang out. What do ya think, guys? email@example.com
Dora, August 12, 2000 - Hi, I am hoping that someone here can help me and explain a few things. I am still pretty new to all of this and I'm rather overwhelmed! I have had severe edema for 2 years and recently underwent a few tests. An echocardiogram showed my ejection fraction at 42% with a tricuspid valve insufficiency. A holter monitor test has my "normal" heart rate at 145+ and says there is indication of supraventricular tachycardia. I had a stress test and also a MUGA. Both of these came out normal although I have yet to get a copy of the report.
My doctor isn't telling me much. I had to get copies of my echo and holter monitor tests and read them for myself. Can anyone explain what the results of the echo and holter monitor test mean? I am totally clueless. I know I need a new doctor and I have already made an appointment with a new guy, but in the meantime I am completely stressed out worrying about it. Thanks in advance. Phandora@aol.com
Bill D's August 12 reply to Jon's August 8, 2000 - Hi, I think it's a good idea to join the two sections also. My reasoning goes like this: Sometimes there are too few posts on the Loved One's side. If days go by without a post, people may think it's closed up and may not write to us. When you join them, please explain they are there for everybody. While you're doing that, please change this, "I am not responsible for, nor do I necessarily agree with, anyone's statements, even my own." How can you disagree with what you just said? <g> Bill D. firstname.lastname@example.org
Jon's August 12 reply to Bill D's August 12, 2000 - Hiya Bill, Awww, that's one of my favorite lines on any of my pages; A true masterpiece! ;-) I'm still undecided about merging message boards, so everyone keep giving me opinions. The main reason to merge them seems to be to increase responses to caregivers and loved ones, and that's a good reason. However, there seems to be a special sense of community obtained by keeping the boards separate as well. Still pondering,... However, keep in mind that putting more messages per day on one board will make it larger and thus slower to load, or I'll have to leave fewer days worth of posts on the page; Things to consider. Jon.
Sharon P's August 12 reply to Dick W's August 9, 2000 - Hi, My first CHF attack was during a vacation to Boulder, Colorado and this led to my diagnosis of IDCM and VT. We were in Colorado meeting with a contractor regarding our dream log-home we were about to build on our property there. Both my cardiologists told me to stay at sea level. I didn't believe him and a year later returned to Colorado for a visit. I was in the emergency room within 48 hours. We returned home to sea level the following day and I was fine. It was a difficult decision made easy, because of my illness, to stay in California. I have found that I am okay as long as I stay under 3,500 feet. I hope this info helps. email@example.com
Gail, August 12, 2000 - Hi everyone, This is my first time on the message board. I have dilated cardiomyopathy and was diagnosed about a year ago, only 11 months after giving birth to my beautiful daughter. I'm dealing with the usual fatigue, as if chasing after a 2 year old isn't fatigue-inducing enough. The thing I just don't get is the insomnia. How can you be so tired but not be able to sleep? I've tried Ambien but it "zings" me out. Does anyone have any suggestions of what works for you? Thanks. firstname.lastname@example.org
Jon's August 12 reply to Gail's August 12, 2000 - Hi Gail, Welcome to Jon's Place. If you find any solutions to the insomnia, please let us know! This is one of my biggest problems with CHF and although I have developed methods to help me have a tendency toward sleep, nothing really does the trick. I find that doing my exercise late evening helps me, but this makes it worse for some people. I also take 2 benadryl (or Tylenol PM - they're the same thing) 3 hours before I go to bed, but again, this makes it worse for some people the next day. Jon.
Donna Z's August 12 reply to Teresa Pierre's August 9, 2000 - Hi Teresa, When I was first diagnosed, my EF was 20%. A year later it was still at 20% and I was upset, so I asked my CHF specialist why when I was feeling so much better and I still only had a EF of 20% her answer was, "I don't worry about the EF number." According to her, there are some of us out there with low EFs who do very well and then there are some who walk around with EFs in the 50% range and feel awful, so it's a very individual thing. She relies more on the <Vo2 test as a indicator for how I am doing.
I do have to agree with others that your best source of treatment and care is with a CHF specialist. Now, I know some of us are not lucky enough to live close to one but it is well worth the trip; And remember to be positive. I truly believe a good attitude is most important. I know most of us have all gone through the "Why me" and that black cloud hanging over our heads, but life is way too short for anyone to dwell on things. I look at it this way: none of us know when we are going to die but we have been given a wake-up call to live life to the fullest. So go take a walk or drive, or see a movie, and think of all the things we still have to do. Enjoy the flowers and sky and life! Donna. email@example.com
Rieale, August 12, 2000 - Hi, I'm all for merging the boards - anything to give Jon more work to do. ;-) Seriously though, I know how much my friends and family are going through and I think merging the boards would allow for better communication on both sides. Rieale@aol.com
Krista, August 12, 2000 - Hi all, My CHF likely developed due to my hypertrophic cardiomyopathy, which was diagnosed when I was 13 years old. I am now 25. My CHF specialist recommended that my 29 year old brother and 26 year old sister have echos done to check themselves for potential problems. This was done several years ago when I was first diagnosed and the results were negative. I requested that they have echos done once again. My sister made an appointment with a cardiologist and explained my background to him, and he gave her a very hard time about the whole thing and made it seem as though he was wasting her time and his. I have great confidence in my CHF specialist, so I do not doubt that their having echos is an important precaution. Does anyone else have their siblings do this? If so, how often? Thanks, Krista. firstname.lastname@example.org
Jon, August 12, 2000 - Hi everyone, If you are interested in participating in a clinical trial of the InSynch pacemaker system for CHF (ventricular resynchronization), skip on over to www.centerwatch.com/patient/studies/cat281.html and see if the "Miracle ICD" trial has a participating center listed in your area. Jon.
Jim C, August 12, 2000 - Hi, I am a graduate student in Physical Therapy and must make a videotape of exercises that would be beneficial for those who suffer from CHF. I would appreciate any feedback or persons to contact regarding this. Thank you. Twinsdad_DC@Yahoo.com
Mary Lou L's August 12 reply to Jon's August 9, 2000 - Hi Jon, You can add my vote to merging the boards. Each group will have greater insight as to the feelings and concerns of the other. For example, there have been instances where some of us CHFers have admitted to having a difficult time asking for or accepting help when we just aren't able to complete (or even begin) a task. As for the caregivers, it seems they are more worried about us than we are about ourselves. We know how we feel but they can only guess. Combining the two sections would help each of us understand the other a bit more. Mary Lou. MLBinks@aol.com
Doug K's August 12 reply to Jon's August 9, 2000 - Hi Jon, I just thought I would toss in my 2¢ worth on the merging forums issue. Obviously, whatever is easiest for you is the ideal thing and only you know that. But it might be a good thing to have mixed posts from patients and caregivers as well. It would allow both sides to get a better idea of what the other side is dealing with. Thanks for asking for our opinion. Bye for now. email@example.com
Bill M's August 12 reply to Jon's August 9, 2000 - Hi, I found this site a year ago. At the time, the message boards were already separated. While I did eventually visit the other board, I found it irrelevent to my situation. Not to disparage others but I was sharing with those who were in my boat. I visit every other day to read the posts. I guess I take everything I read to heart, so to speak. I read about those who walk 2 or 3 miles a day but I'm lucky to walk a 1/4 mile without my legs cramping up. Yes, I've been through cardiac rehab, but I didn't get any better. My last EF was 16%. I had a 5-way bypass about a year ago and I still remember all the e-mails of love and hope I received. I read the letter from the person in Washington state who sounds like SS is bound and determined to deny him. I got SSD on first try without a lawyer. I thought wow, I was lucky. After the last posts about mortality, I'm starting to think I must be on the short list, if ya get my drift.
Jon, hey whatever is easier for you, but I must be honest; I read posts from those like me afflicted and I don't think I can start worrying over the thoughts of those who are asking questions about others. I hope I have not offended anyone but this is my honest opinion. Bill M. firstname.lastname@example.org
Rosemary F's August 12 reply to Jon's August 9, 2000 - Hi Jon, I am for combining both message boards. Insights given on either one would surely be a help to those on the other. Thanks again for a great job. Rosemary F. email@example.com
Bev T, August 12, 2000 - Hi everyone, Well, summer in the mountains was just great, but now I'm back in hot, humid Florida. (sigh) I've been thinking about so many of us taking 50mg of Coreg twice a day, and for me that's $176 a month. What if we all wrote to SmithKline and complained and asked that they make a 50mg pill? I really think this is a great way for them to get richer. Any thoughts? Mtnmama008@aol.com
Mina Meyer, August 12, 2000 - Hi, I haven't written in a very long time and the news I want to share is really wonderful. My EF has been between 20 and 30% for many years and my heart has been enlarged for the past couple of years. I've had CHF for 9 or 10 years. I had a new echo last month and my EF was 65% and my heart is no longer enlarged! The new med in my life that I give credit to is the beta-blocker atenolol. I'm now taking two 25mg pills a day of it, along with 20mg of Zestril once a day, and two 40mg Lasix a day. I think the atenolol dropped my blood pressure so low it allowed my heart to heal. Anyhow, I feel wonderful and wish the best to everyone. Miracles can happen. firstname.lastname@example.org
Trish, August 12, 2000 - Hi, I'm 34 years old with DCM and CHF. My EF has been roughly 20% for 2 years. I've been a stay-at-home mom for 9 years. Now my youngest is in school all day and I want to go back to work. My doc says no way, apply for SSD. Social Security says I don't qualify because I haven't worked 5 of the last 10 years. The years I worked prior to that do not count. Any advice? email@example.com
Sharon P's August 12 reply to Gail's August 12, 2000 - Hi Gail, I have suffered with insomnia all my life and now dilated cardiomyopathy and the drugs taken for it have only made it worse. I have tried many things too, including Ambien, and have found the only thing that works for me is a very rigid bedtime and wake-up schedule. I only allow myself 30 minutes of reading before bedtime or I'll read all night. I also have quit comsuming any sugar after 3:00 PM. If I get off schedule, I'm back where I started - not sleeping. firstname.lastname@example.org
Frank Smith, August 12, 2000 - Hi everyone, To merge or not to merge is not the question. To keep Jon so busy that he can't get into trouble should be our focus, because if he were able to get into trouble, where would that leave the rest of us?! Many of us visit the other page anyway and for some that is work which we should make Jon do, to stay out of trouble. Merge! Later, Frank. email@example.com
Tom Stocker's August 12 reply to Bev T's August 12, 2000 - Hi Bev, I currently take 25mg Coreg twice a day and that's probably the only practical way to take that particular dose of the drug. A single dose of 50mg probably would be too much at one go, so that's probably why the 25mg is the maximum dose available. I have not paid a dime for Coreg since I went on it nearly 4 years ago. My doctor pulled some strings with the manufacturer and I get two 100-count bottles of 25mg pills whenever I need them at no cost to myself. Maybe you need to check with your cardiologist and see if he can get you a freebie. firstname.lastname@example.org
Jon's August 12 reply to Bev T's August 12, 2000 - Hiya Bev, When I was taking 50mg Coreg twice a day, I would have liked 50mg pills myself. Like Tom says, though, I don't know how many people take 50mg twice a day. Jon.
Helen Otis' August 12 reply to Bev T's August 12, 2000 - Hi Gail, Having struggled with insomnia since I was 12, I truly believe I have tried everything possible. I have taken benadryl, exercised, cut out caffeine and sugars, and even got desperate enough to use codeine to try to knock myself out for a few hours of sleep. It all worked for a short time, then would stop working and I would be right back in the same old boat. For now, I have started something that I hope will work: Every night before I go to sleep I work on word searches for about half an hour, then I put on my Rolling Thunder CD, turn out the lights, and let the sound of rain relax me and send me off to dreamland. It usually works. I have been falling asleep by 2:30 AM and getting up by 10:00 AM. That is a lot more sleep than I was getting before. Combined with my afternoon nap, I almost feel normal. The Rolling Thunder CD came in a collection of 10 CDs called Relaxation Nature's soothing sounds. The other CDs are African Rainforest, Artesian Springs, Bird Sanctuary, Deep Woods, Secluded Lake, Telluride, The Shore, Pine Forest, and Humpback Whale Serenade. I hope this helps some. Helen Otis, age 26, EF 25-30%. email@example.com
Joy R's August 12 reply to Bev T's August 12, 2000 - Hi, Talking about not getting any sleep, I wish a cure for that could be found. I allow myself 1 or 2 Restoril a week but no more than that, and that is usually the only night I sleep; But the night I take Restoril I keep my husband awake because I twitch and have so many muscle spasms. The Restoril doesn't cause the muscle twitches,it just lets me sleep while I'm having them. This past week the doc gave me Flexeril, a muscle relaxer, and it has helped some. Does anyone else have these twitches? Is it caused by the heart meds? Joy. firstname.lastname@example.org
Jon's August 12 reply to Joy R's August 12, 2000 - Hi Joy, I get them off and on. It may be RLS or Restless Legs Syndrome. Unfortunately, the treatment can be worse than the condition. Jon.
Karen K, August 12, 2000 - Hello All, I'll settle this once and for all. I know you've been waiting with baited breath for my vote - and - I vote that the two discussions combine. My reasoning is this: My husband was just diagnosed with MS (thankfully it didn't turn out to be ALS). I am able to participate in a caregiver's portion but not the part where those with the condition post. I feel I could garner a lot more information accessing both and although Jon already allows this, it makes sense to me that the two merge. Karen K. email@example.com
Ron Ferguson, August 12, 2000 - Hi, I was diagnosed with heart failure 20 months ago. I had arrhythmia and received cardioversion, which returned my heart to normal rhythm. Since then I have made a good recovery. However, sometimes if I was bicycling in hot weather (I live in Arizona), my heart would "feel strange" and I would rest until the feeling dissipated. I asked my doctor if it would be useful to get a sports heart monitor. He seemed noncommittal but I decided to try it. I bought a Polar Target heart monitor. Using it, I have observed that the maximum normal rate my heart beats is about 135 beats per minute. If I am exerting myself it will sometimes jump to above 200. Since there is such a large jump in my apparent heart rate from 135 to around 235, I assume my heart is arrhythmic at that point. If this happens and I lie down, my heart returns to a normal rhythm after a few minutes (at least it has so far). Once again, there is a sudden jump from around 235 to a value of around 104.
If you suffer from attacks of arrhythmia, you might consider getting a sports heart monitor. The Polar Target heart monitor can be set to beep your heart rhythm if it goes above a certain level. I have mine set to beep if my heart rate reaches 130 or above. Thus it warns me when I should slow down. firstname.lastname@example.org
Rieale's August 13 reply to Krista's August 12, 2000 - Hi Krista, I'm glad you posted. I had a similar experience last week. I'm 23 and have cardiomyopathy and CHF. My docs think it was either caused by virus or maybe hereditary. So as my niece has gotten older, she has many of the same breathing problems that I had as a teen. Two weeks ago, my sister asked Hailey's (my niece's) doctor if she could have an echo done to check it out. He was very hesitant and told her that just because I have CHF and Hailey and I are similar, it doesn't mean that she has a heart condition.
Well, he finally understood that we were not going to have peace of mind until she underwent testing and he consented and told the insurance company that it was necessary. So she had an echocardiogram done last week and it showed no abnormalities. Her doctor said that it would probably be a good idea to get re-checked every two years or sooner if she ever noticed extreme shortness of breath, weird beats and so on. I will cross my fingers and pray that your siblings continue to be heart healthy. Rieale@aol.com
Diane Paul, August 13, 2000 - Dear Jon, I've just found out that I have a problem with my heart. My ejection fraction is 40%. I don't have an exact diagnosis yet but I think I'm dealing with late onset anthracycline (adriamycin) induced dilated cardiomyopathy. I am a 7-year survivor of ovarian cancer, in long-term remission. I'm looking for support and information. If there is any way you could put me in touch with people who have dealt with this type of problem, I'd greatly appreciate it. Thanks, Diane Paul. PaulDP@sfitva.cc.fitsuny.edu
Jon's note: Be sure to check Me Too!
Judy S, August 13, 2000 - Hi, This is in response to the many posts regarding insomnia. I have IDCM and VT and take all of the usual meds, and have insomnia from time to time. I have found that a few capsules of Kava-Kava or Valerian Root half an hour before bedtime solves my problem quite nicely. They don't leave you with a drug hangover the next day and promote a restful sleep. They are available at most health food stores and at many drug stores. As always, consult your doctor, especially if you have a low heart rate. This works for me but as Jon says, everyone is different. Best wishes to all. God Bless, Judy. email@example.com
Walter K's August 13 reply to Tom S' August 8, 2000 - Hi, My mother in law, now 100, was visiting us once about 20 years ago. She had bronchitis, had some sort of attack and couldn't breathe. She was rushed to the hospital. X-rays were taken, which disclosed she had an enlarged heart, probably not related to the problem she was having at the time. Nothing was ever said about her having CHF. When she was 85 or 90 she started getting out of breath easily but she is still around at age 100. I suspect she may have CHF but who knows? She is in a nursing home (a good, caring, one if there is such a thing). She is almost blind, in a wheelchair, can't hear worth a darn but has enough wits to realize how miserable she is. No Alzheimer's, although sometimes I think she would be better off if she was out of it. The point is that she has lived at least 20 years, possibly a lot longer, with an enlarged heart to the age of 100, and is not very happy that she is alive. At least that is what she says. firstname.lastname@example.org
Jon, August 13, 2000 - Howdy-doo everyone, I have another question that is really important to me as far as merging message boards goes. If I merge them and daily posts increase, I will need to keep fewer days' worth of posts on the board at one time, meaning there might only be 3 days worth of posts here at any one time. So if you wanted to view a post 4 days old that was being replied to, you would need to go into The Archives to do so. Is that a problem for anyone? By the way, due to the cost of lots of page views on really large pages like The Archives pages, they will be staying on geocities. Jon.
Frank Smith's August 13 reply to Jon's August 13, 2000 - Hi Jon, I understand your thoughtfulness in checking with everyone about the changes. If accessing The Archives becomes a problem, I assume that these changes could always be reversed, but then again, I have never taken on the wonderful job that you do with your web site. Merge! Later, Frank. email@example.com
Jon's August 13 reply to Frank Smith's August 13, 2000 - Hi Frank, There's method to my madness. <g> First, it will be a lot of extra work to reverse any changes made in the message board format because the changes are also reflected in The Archives, all links contained in the messages on the boards, etc,..., so I will not make any changes without a pretty good idea that they are going to work for as many people as possible. I'm not up to any unneccessary work on the site right now.
Second, this could really be a big problem for some people. Consider that many people use 28.8 modems and some still use 14.4 modems, and many people have what are now called "slow" computers. Until this very year, I was using a slow pooter with a slow modem myself! For these poeple, flipping back and forth to The Archives - which are filled with very long, slow-loading pages - 4 or 5 times during their reading of The Beat Goes On might become more than it is worth doing, limiting their participation. So I want to see how many people write me about this issue before making any changes. I can't make the board a really long page simply because it is viewed so often that my per month hosting fees would go up. So while it may seem that I am hesitating too much, I am actually just considering all the angles (I hope).Jon.
Bill D's August 13 reply to Joy R's August 12, 2000 - Hi Joy, I think we've talked about this before but in the interests of newbies maybe we should talk some more. <g> I've been hooked on Restoril (tamazepine) for about 12 years now. I take a 30mg capsule every night to sleep. After all those years it seemed they were wearing kind of thin. At first I managed to get hold of some 15mg capsules and I'd cut them in half and boy, would I sleep! The problem was I couldn't wake up! Then I tried Tylenol PM and found I could get double the stuff in Target's "Sleep Aid." That in combination with the Restoril worked for a while but in the end the combination didn't work at all. So I'm back to the 30mg of Restoril. If I go to bed late enough (2:00 AM), it gives me 7-8 hours of sleep. That, coupled with two 1-hour naps during the day gives me all the sleep I seem to need. Boy, I'm glad they didn't have drugs back in my day! I would have been hooked on anything that would let me sleep! Bill D. firstname.lastname@example.org
Walter K's August 13 reply to Jon's August 13, 2000 - Hi Jon, Earlier I e-mailed you that I was in favor of merging the boards. Now that I have read your posts about what that entails, I have another suggestion. One reason I do not look at the caregivers' posts as often as I would like is that after I have read the new CHF posts, I simply forget. Talk about short-term memory loss! I suggest that, on each board, you add a link after the text of the last posted message which would take you to the other board. I know there is such a link at the top of each page; leave that there. Adding a new link after the last message just above your new post form would let one read all the new posts, have their memory jolted by seeing the new link "Caregivers' Board" on the CHFers' board and "CHFers' Board" on the caregivers' board and allow one to get to the other board simply by clicking on a link that is in plain sight. It may be simple-minded but I think it would help. Incidentally, speaking of new links, I wouldn't mind seeing one at the top of each board that would take one to the first "new" post title. I usually scroll down to find them and scroll right past and have to back up again. Boy, am I ever lazy! email@example.com
Pat Y's August 13 reply to Jon's August 9, 2000 - Hi Jon, You are doing us a favor by providing information for us. Therefore I vote with whichever way is easier for you to provide the boards for us - those who have CHF and those who have family members with CHF. It doesn't take us much time to check one or both boards. PTYoumans@aol.com
Rosemary F's August 13 reply to Jon's August 13, 2000 - Greetings to you and everyone, I have no problem with your archiving posts more frequently. I really would like to see the two bulletin boards combined. Sincerely, Rosemary F. firstname.lastname@example.org
Sherrell G's August 13 reply to Jon's August 13, 2000 - Hi Jon, I read this board daily and used to read the loved ones' page daily but now do not take the time to do so on a regular basis. Therefore, my vote would be to merge because once I am here I read all the posts. Having to go to The Archives is not hard if one needs to reread a particular post or needed to catch up on posts missed. TonyGay@Worldnet.att.net
Bev T, August 14, 2000 - Hi again, About Coreg, I now have another question. Who out there is on 50mg twice a day besides me? I have been under the impression that more folks are being put on 50mg twice a day. Am I wrong? I've questioned myself as to why the transplant docs put me on 50mg twice a day. They just said "more is better." Now I wonder (I'm not overweight). Jon, not to get personal, but why are you off Coreg? If anyone has any information from your doc, please pass it on to me either by private e-mail or post it here. Thanks so much, Bev. Mtnmama008@aol.com
Jon's August 14 reply to Bev T's August 14, 2000 - Hi Bev, I must have missed something somewhere. Why are you worried that your Coreg dose is improper? Are you having side effects? The standard dose is 50mg twice a day for anyone over 187 pounds. I explained my Coreg reduction here. Jon.
Mary H, August 14, 2000 - Hi Jon, It so often goes undone! You need to toot your horn. I have been to many sites and yours is the greatest, most informative, updated, and I visit it daily (sometimes twice) just to read what everybody is up to. Where else could I read about Walter's 100 year old mother-in-law, Tom's ant brigade, Rick's help in the ant brigade and the person looking for the scout ant. As for the exercise that Jim C is looking for, the best exercise is the movement and clicking of the mouse to your site. Thanks for a job well done and the time you have devoted. Toot, toot! Oh yeah, as for merging, I am opposed. Now, I must go and wash my nose. Later ya'll. M123_@excite.com
Becky's August 14 reply to Jon's August 13, 2000 - Hi Jon, My husband is the one with CHF but I am the one who checks all the posts - on both sites. I often get Elton to read certain posts but I read them all. I agree with Pat Y - merge or not merge - do what is easiest for you. I'll read them all no matter. Thank you for your desiring our input. Thank you also for your caution before change. Your site is such a blessing and a help that checking The Archives more frequently, etc., won't hurt any of us. Becky. RebeccaG99@aol.com
Tom W's August 14 reply to Jon's August 13, 2000 - Hi Jon, I'm just plain lazy and do not like changes. I would prefer the boards to remain separated. I do like the Rick's idea of adding the third board for those looney folks with CHF! ;-) email@example.com
Jean C's August 14 reply to Joy R's August 12, 2000 - Hi, When TV won't put me to sleep, I drink a cup of Sleepy Time tea, which is available at the grocery store. I haven't had persistent insomnia for some months now so maybe if you can just break the cycle, you'll have it made.
On merging the boards, we are so lucky that Jon makes it possible for us to share tidbits of information like this and I think that he should do whatever is easiest and most time-saving for him as far as merging the boards. I think Walter's idea of a link at the bottom of the message pages is a great idea. Rushing about, Jean C. firstname.lastname@example.org
Kathryn C's August 14 reply to Jon's August 13, 2000 - Hi Jon, I agree with most other folks here that merging is a good idea but please consider your own labor requirements first. Whatever is easiest for you. You are providing a vital service to those with heart difficulties and those who have been intimately impacted by their loved ones' disease.
I run into people everywhere who have heart trouble and have no resource for good information. I was behind a lady in the supermarket checkout line who was buying low-sodium chips. She commented to the checker that she has difficulty finding low-sodium foods for her husband. Her husband has CHF. I had to chime in and tell her about your web site. She was very appreciative. I didn't get her name but I know she will visit here. It was like I had opened a window and a fresh breeze wafted in. Her whole face lighted up. Also, someone I work with has a son (12 years old) who had CHF and DCM and had to have a transplant. He is doing okay and is home from the hospital getting used to his medication regime. I told his father about your web site and I am sure he is a devoted reader too. You touch so many lives and help so many people. Thank you!
Merge and purge and archive when you need to. We will be happy with your wonderful site however it functions. I can't imagine my day without checking out Jon's Place. God bless you! Kathryn. Kathryncole@hotmail.com
Jeanette's August 14 reply to Jon's August 13, 2000 - Hi Jon, I don't have a problem with that. If I don't get to your site for awhile sometimes, I read The Archives anyway. Stay cool, Jeanette. email@example.com
Linda's August 14 reply to Jon's August 13, 2000 - Hi Jon, I was very much in favor of combining boards until your last message. I often don't get to check the site every day. I'm often catching up after several days. Having to go to The Archives as often as I would have to do would be a major pain. I suspect that I just wouldn't do it very often. The thread of people responding to other's messages would be lost, since it generally takes a few days to post an answer. I think it would be the same for others once they started using it. I vote to keep what we are all used to. Maybe just put a link to the other board at the end so we don't have to go to up to the top all the time. firstname.lastname@example.org
Peggy, August 14, 2000 - Hi, I had a cardiolyte stress test about a week ago and I have been sick to my stomach ever since. Does anyone know if this is normal? email@example.com
Bill D's August 14 reply to Jon's August 13, 2000 - Hey Jon! I've changed my mind about merging the boards. It never occured to me that there might only be 3 days of posts. I like to go back and see the post that was answered. Sometimes a whole week passes before somebody answers. It would be too difficult to go to the archived posts every time you wanted to see what the question was. I think Walter K has the right idea. On the last post of the day there should be a reminder link, taking you to the other board. Bill D. firstname.lastname@example.org
Billie Jo, August 15, 2000 - Hi, This is just my 2¢ on combining posts. Personally, it would pose difficulties for me since all my computer equipment is old, slow and outdated. Downloading all that extra stuff and having to check The Archives more often would get awfully frustrating. I would love a faster system but only have what I have as a gift from a friend upgrading his own, and beggars can't be choosers. As many of us as are out of work and on limited incomes, many others may have slower, donated equipment also. I think it might get confusing between who is a caregiver and who is a CHFer. I like the idea about a link at the bottom to get to the caregivers' page since I do think we should both communicate more often and I often forget to check out the other side after reading The Beat Goes On. email@example.com
Billie Jo's August 15 reply to Krista's August 12, 2000 - Hi Krista, I don't have siblings but am myself the fourth generation maternal-side female in my family with heart disease. My mom, grandma, and great-grandma all had some form of heart disease. Now I find this strange, but my cardiologist states that hereditary heart disease is very, very rare, and that if I was concerned about it, I would have to join an hereditary specialist-type program with a barrage of tests to determine if my children are at risk. Have you or your siblings gone through any such test or program? firstname.lastname@example.org
Billie Jo's August 15 reply to Trish's August 12, 2000 - Hi Trish, I feel for you. I'm not exactly in the same boat but the opposite. I always worked and was forced into being a stay at home mom due to my DCM/CHF. I love being with my kids, but it's hard without my paycheck. I qualify with past work history for benefits but was totally denied for SSD, even with my doctor on my side and him not wanting me to work. I am looking into some type of displaced workers program to get educated in a new field of work that I can perform. For now, I suggest taking whatever help you can get from DSHS. SSD seems to be pretty strict on their rules. If you haven't been dependent on an income from your side, enjoy being there for your kids and take up a hobby to fill your spare time while they're at school; be a teacher's aid or do some volunteer work. Best of luck to you! email@example.com
Billie Jo's August 15 reply to Donna Z's August 12, 2000 - Hey Donna, That was a very good post! I got stuck in the "Why me?" blues for a very long time, and I still struggle with it from time to time. I have to remind myself of the fact that I'm still here when I really wasn't expected to be! All the things I thought were going to be impossible have turned out okay. I just read about the Vo2 test. I'm one of those people with the higher EF (40% at my last echo) but low energy. I just got a motorized treadmill donated after a long search. Yea! I can barely walk at the lowest setting for 10 minutes before pooping out. I have been consistently denied by SSD. Does anyone know if they take Vo2 tests into consideration? It sounds like a hard test but if it can prove to them that even with a higher EF, I don't have the energy to hold a job, it might be worth it. Here's to smelling the flowers, sunsets, ocean breezes, and enjoying life! Best wishes to everyone. firstname.lastname@example.org
Jon, August 15, 2000 - Hi everyone, Well, I have pretty much decided to keep 2 forums but to link them more conveniently and more obviously. I got bunches of good ideas and feedback. You have no idea how much easier that makes it for me to provide better service! Thank you to everyone. Before I work on a better linking scheme, I am going to work on getting the forms to accept Netscape the same way they do Internet Explorer. I have installed a new cgi script but am only using it on a test page until it works to my satisfaction. I'll let you know, and thank you all for your patience.
If you get an error message and can't post through my forms for now, please e-mail me the post and I'll post it with the others. Just let me know it's for posting to The Beat Goes On. Thanks again, Jon.
Jan S, August 15, 2000 - Hi, Has anyone taken or have knowlege of side effects of the anti-depressent Celexa? Jan. Geschuppja@aol.com
Ben B's August 15 reply to Billie Jo's August 15, 2000 - Hi, It seems to me from some of your posts that you really want to try to work, but only in a less demanding job physically. I personally think this is good if you think you can hack it. Have you looked into your local junior college for training? I have been tutoring in math for the disabled students at a JC near me, and I am amazed at how much financial aid they get. They have all sorts of vocational programs and don't have to pay for them. In addition, they get grants and work study programs on top of that. Finally they have job placement. Even if you don't ever go back to work, just taking the classes is something to do. I know all states are different, but it's worth a try. I have found that boredom is the chief enemy in the emotional battle with this disease. email@example.com
Jon, August 15, 2000 - Hi everyone, I just switched this form to the new script. If anyone has trouble with it (aside from forgetting to fill in required fields), please e-mail me immediately. Don't fret if you don't hear right back from me. Just know that I'll be workin' on it. Thanks, Jon.
Tom S, August 15, 2000 - Hi, For those of you who have been following the ant and roach thread, I think I may finally have some closure to my roach infestation problem. Thanks to all who provided some old fashioned remedies, which ranged from beating them to death with very large shoes to a boric acid condiment. Remember, for safe eating use a condiment, but that's another story. I went on a big offensive with the Boric Acid recommendation made by most folks on this forum and made most of my kitchen look like a winter blizzard had struck. That was about 2 weeks ago. For the past 3 nights when I go into the kitchen that was worst infected with ants and roaches, I have not seen a single roach scurrying for cover when I turn the lights on. Time will tell if this is a temporary solution. We should know pretty soon because roaches in distress have the nasty habit of laying egg cases with thousands of babies that hatch about 2 weeks later. By the way, in the process of looking for solutions we found that one of the most powerful ant eradication devices besides Boric Acid to be those little Combat Roach Traps. While it didn't help with our roach problem, we learned that sugar ants love what is in that product and it actually will first attract them, then when they take it back to their nest it will kill them off - like it was supposed to do with roaches. Amazing what you learn by observation. Thanks again to everyone for their help on this particularly vexing problem. firstname.lastname@example.org
Rieale's August 15 reply to Billie Jo's August 15, 2000 - Hi Billie Jo, Ben's really on to something here. In Ohio we have a Bureau of Vocational Rehabilitation where they will help pay for training or education (get that Bachelor's degree you always wanted) on the state's bill. In Ohio they get their funding in October so act fast before all the money is gone. I'm not sure how other states work but there are probably comparable programs. Rieale@aol.com
Kathryn's August 15 reply to Jan S' August 15, 2000 - Hi Jan, My son has CHF, DCM and takes Celexa. The drug is fairly new to the USA but has been in use in Europe for quite some time. My son has had no difficulties and Celexa has seemed to help him beat the blues or at least to maintain his equilibrium. That's as much as I know. I hope others will post more info. Kathryn. email@example.com
Walter K's August 15 reply to Krista's August 12, 2000 - Hi Krista, Like Billie Jo (her post of 8/15), I don't have siblings but I do have a family history of heart disease; in fact, of CHF. My father developed it at about the same age I did. My paternal grandfather died of heart disease but I don't know what kind. I have asked several cardiologists about this hereditary possibility because I have a son and a daughter, and I don't know if they are at special risk or not. Two cardiologists have said that I didn't inherit it but got it from a viral infection.
I don't know if they are right or not but I also do not know what makes them say this. I think a lot of us have been told we have CHF resulting from a virus and I am very curious about this "virus." Does anyone know if this is a proven common cause or just an urban medical legend? If proven, what kind of virus - a common cold? A virus that still lurks in our hearts or elsewhere, or one that leads to CHF after we get over the virus? A virus that is contagious to someone else? If contagious, would everyone who got that virus get CHF or just some people? I don't believe CHF is contagious though a virus usually is. My CHF specialist at least recorded it in his records that I have a family history of CHF. Other docs didn't even bother to do this. I've seen their records. firstname.lastname@example.org
Jon's August 15 reply to Walter K's August 15, 2000 - Hi Walter, Viruses can cause cardiomyopathy, which can cause CHF. They are fairly common-type viruses and many people get them without any heart problems resulting at all - just flu-like symptoms for the most part. However, a lucky few have the virus attack their heart muscle. Then their own body attacks the virus and the antibodies usually further damage the heart in the process of killing the virus.
A heart biopsy is used to look for antibodies to specific viruses known to cause cardiomyopathy in this fashion. If you've had a biopsy, ask whether such antibodies were found or not. If they were, it was almost certainly a virus that gotcha. If not, it's anybody's guess, but doctors usually call it a virus anyway, instead of calling it idiopathic like they should. Jon.
Woodie, August 15, 2000 - Hi, I went to a heart specialist in November of 1999 with what I thought was a chest cold and shortness of breath. He began treatment for CHF. He prescribed Vasotec, Lanoxin and Lasix. In April of 2000 the Vasotec was switched to 5mg Plendil daily because of coughing. At my June visit, I complained of pain in my feet. A blood sugar reading of 459 was taken. He referred me to an internal medicine doctor for the sugar reading in July. This doctor changed the Lasix to Tiam/HCT37 and added 500mg Glucophage twice daily and 30mg Actos daily. My blood sugar dropped into the 200 to 275 range. At a second visit in July, the internal medicine doctor increased the Glucophage to 500mg three times daily and started me on 3.125mg Coreg twice daily). I have a visit on August 28 with the internal medicine doctor, who plans to step up the Coreg. An appointment with the heart specialist is in September for an echo to determine status. My EF was in the 20-25% range in November. I'm new to all of this. What questions should I have for the upcoming appointments? email@example.com
Billie Jo's August 15 reply to Ben B's August 15, 2000 - Hi Ben, Thanks a lot for the advice and support. I just picked up a bunch of flyers at my local unemployment office and you're right; there are a lot of free tuition programs for low income and disabled persons. Some even allow you to draw unemployment while attending classes! It even looks like I might qualify for that, since I didn't voluntarily leave my job nor was I fired. Wish me luck. I'm a little intimidated about returning to school after 13 years! firstname.lastname@example.org
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.