Wayne S 11-16 sleeping tips, sodium & SOB
Joe S 11-16 question about tooth loss & heart health
Jon's 11-16 reply to Joe S' 11-16 tooth loss & heart health - CoQ10
John Len's 11-16 reply to Jon's 11-15 Medicare reimbursement policies & more
Jon's 11-16 reply to John Len's 11-16 more info coming
Jon 11-17 posts later & more
Chris S' 11-17 reply to Luc D's 11-11 intro, questions about some things
Jon 11-17 Medicare coverage spreadsheet now available
Tony D 11-17 questions about new CHF treatment
Brenda C's 11-18 reply to Tony D's 11-17 new CHF treatments
Jon's 11-18 reply to Brenda C's 11-18 & to Tony - new CHF treatments
Jeanette's 11-18 reply to Jon's 11-15 my sleep problem is like this - need some help
Jon's 11-18 reply to Jeanette's 11-18 my mistake - I hope others reply!
Robert N 11-20 some low sodium food tips
Sherrell G's 11-20 reply to Brenda's 11-18 inflammation-stopping drugs for CHF
Mary H's 11-20 reply to Jeanette's 11-18 meds can cause fatigue
John Len's 11-20 reply to Jeanette's 11-18 Url that may help
Jon's 11-20 reply to Jeanette's 11-18 CHF meds and fatigue
Anna N's 11-20 reply to Jeanette's 11-18 fatigue, fresh air, hope others reply
Roger's 11-20 reply to Jeanette's 11-18 fatigue, vitamin E & more
Joni 11-20 intro, has anyone been to Cleveland Clinic?
Cecil C's 11-20 reply to Joe S' 11-16 loose teeth possibilities
Jeanette's 11-20 reply to Jon's 11-18 sleep clinics scheduling & more
Cindy 11-20 who else has allergy or sinus problems?
Mike J 11-20 Jon, thanks for sinus info
Jon's 11-20 reply to Mike J's 11-20 more sinus info
Barb L S' 11-20 reply to Joe S' 11-16 tooth loss possibilities
Barb L S' 11-20 reply to Jeanette's 11-20 sleep problems
Jeanette 11-20 thank you all
Tonya Dean 11-21 happy Thanksgiving & more
Leeann D 11-21 too much sleep can hurt too
Jes 11-21 does anyone have right heart enlargement?
Tracey C 11-21 seek low sodium stuffing recipe
Chris' 11-21 reply to Joni's 11-20 Cleveland Clinic experience
Jon's 11-21 reply to Joni's 11-20 Cleveland Clinic experience second hand
Shelby 11-21 intro, thank you
Ben B's 11-22 reply to Leeann D's 11-21 I remember you
Pat Y's 11-22 reply to Tracey C's 11-21 low sodium stuffing recipe
Rieale's 11-22 reply to Joni's 11-20 Cleveland Clinic experience
Wendi 11-22 lots of questions
Mary Lou L 11-22 holiday wishes
Terri 11-23 rising EF but not feeling better - anyone else?
Jon's 11-23 reply to Terri's 11-23 I also have this problem - anyone else?
Jon 11-23 apology, posts
Joe S' 11-23 reply to Wendi's 11-22 similar circumstances - my experience
Shirley's 11-24 reply to Terrri's 11-23 rising EF but no extra energy here too
Richard H 11-24 a-fib misery & more - seeking advice
John Len's 11-24 reply to Wendi's 11-22 rheumatic fever & valve replacement experience
Brandy 11-24 have PPCM and seek support, & more
Wendi's 11-24 reply to Joe S' 11-23 magnesium deficiency & more
Wendi's 11-24 reply to Cindy's 11-20 sinus and allergy problems
Patricia 11-24 chest pain questions & more - please reply
Jon's 11-24 reply to Patricia's 11-24 chest pain
Bob H 11-25 hey, I'm still here & more
Ben B's 11-25 reply to Brandy's 11-24 that is an old statistic
Robin Lynn's 11-25 reply to Terri's 11-23 tub scrubbing, fatigue & meds, gum disease
Jean C's 11-25 reply to Patricia's 11-24 chest pain, upset stomach & more
Jeanette's 11-25 reply to Brandy's 11-24 coping
Thelma 11-25 seek CHF doc in Iowa
Brandy 11-27 thanks to all , prayer request & more
Thelma 11-27 seek CHF doc in Omaha or western Iowa
Ted 11-27 heart enlargement question
Jeanette's 11-27 reply to Robin Lynn's 11-25 heart disease and teeth & gum problems
Ron P 11-27 intro, CHF doctors , questions
John Len's 11-27 reply to Jeanette's 11-25 sleep apnea site
Brian's 11-27 reply to Wendy's 11-22 rheumatic fever, valve replacements & more
Jon's 11-27 reply to Brian's 11-27 exercise
Krista L 11-27 seek health insurance advice
Madelyn J 11-27 carbon monoxide warning
Ernest 11-27 I like having my Coreg dose reduced
Tracey C 11-27 seek dental Lidocaine experiences
Carol M 11-28 home from the hospital, had an MI, & more
Patricia's 11-28 reply to Jean C's 11-25 doctor trouble & more
Mike J's 11-28 reply to Brandy's 11-24 about that 5 year prognosis, & more
Mike W's 11-28 reply to Tarcey C's 11-27 dental anesthetics
Cathy 11-28 update on Greg & more
Nereida 11-28 sure am tired, & more
Carol M's 11-28 reply to Krist L's 11-27 changing insurance coverage
Jamie's 11-28 reply to Tracey C's 11-24 lidocaine
Jeanette's 11-28 reply to Tracey C's 11-24 lidocaine
Jeanette's 11-28 reply to John Len's 11-27 thanks for the info
Victoria F 11-28 please remember Phyllis & more
Carol M 11-28 doctors and the Internet
Jon's 11-28 reply to Carol M's 11-28 doctors and the Internet
Brandy's 11-28 reply to Ron P's 11-27 welcome to The Beat Goes On
Brandy 11-29 "chest pain" in the back question
Jim L 11-29 thanks & more
Gaynell 11-29 intro, how often to have an echo?
Jon's 11-29 reply to Gaynell's 11-29 having echos
Jan G 11-29 intro
John Len's 11-29 reply to Scott's 11-28 my experience
Wayne S 11-29 is taking 2 ACE inhibitors strange?
Autumn's 11-29 reply to Carol's 11-28 lidocaine, dental decay & CHF
Jon 11-29 dental decay & CHF
Bill D's 11-29 reply to Wayne S' 11-29 taking 2 ACE inhibitors together
Taavi K's 11-30 reply to Brandy's 11-29 back pains and chest pains
Davida's 11-30 reply to Terri's 11-23 meds may add to fatigue for some people
Ginger's 11-30 reply to Ron's 11-27 understanding all those abbreviations
Cindy's 11-30 reply to Wendi's 11-24 sinus problems
Anna's 11-30 reply to Brandy's 11-29 chest pain and back pain
Jill M 11-30 now my sister has CHF!
Wayne S, November 16, 2000 - Hi everyone, Well I am tired. I have sleep problems too. I sleep under a ceiling fan on low speed and this helps. Since starting Coreg I do have weird dreams that wake me up. I seem to fuction better with shorter periods of sleep. Sometimes I feel real good and then all of the sudden I am tired. It seems then I have to take a nap. When I am short of breath I stand in front of a fan, which helps, or I ride my motorcycle; Force-fed oxygen, I guess. I really watch my sodium intake. I believe shortness of breath and sodium intake are related. God bless, Wayne, EF 20%, CM, CHF. email@example.com
Joe S, November 16, 2000 - Hi everyone, Well, I lost another tooth yesterday and was wondering if there is any connection with an underachieving heart and teeth loss. If my organs do not function right because of it, couldn't my teeth go bad for the same reason? Anyone have any ideas? Joe S. firstname.lastname@example.org
Jon's November 16 reply to Joe S' November 16, 2000 - Hi Joe, There is a definite correlation betwen tooth decay/gum disease and heart disease in general. One possible solution is CoQ10. Whether CoQ10 helps CHF is open to question depending on who you ask, but it is well established that CoQ10 does help gum disease and oral health. Jon.
John Len's November 16 reply to Jon's November 15, 2000 - Hi, Since reading Linda's post, the fact is I need another sleep study for sleep apnea. Medicare has me paranoid to get one because of such problems as Linda mentioned in her post. With me, it took 10 months worth of denials before Medicare decided they would pay for my bipap machine (about $2200), which would have left me stuck with the bill. email@example.com
Jon's November 16 reply to John Len's November 16, 2000 - Hi John, Tomorrow I'll have speadsheet in Excel 97 format I can e-mail to whomever wants it that lists all the procedures in question. I'll post it as soon as I am sure it is 100%. Jon.
Jon, November 17, 2000 - Hi everyone, I have to do some things before putting up posts today but check back later; I will get to it as soon as possible. I do have that spreadsheet of Medicare procedures and will post an Url where you can download it when I do posts. Jon.
Chris S' November 17 reply to Luc D's November 11, 2000 - Hi folks, I am new but hope to participate in this group. I got out of the hospital August 6 after a two week stay which found me with CHF and idiopathic CM. I experienced abject kidney failure while there after the cardiac catheterization. Has anyone heard of why that might happen? One theory was the too quick withdrawal of prednisone and the other was the iodine dye in the test procedure. All I know is that for 5 days I was sicker than ever. Now they tell me I need a heart transplant. My EF was at 20%. I don't feel bad now and I walk a lot. I was initially misdiagnosed with asthma, then finally went to the ER after the wheezing and sleep apnea continued. I'm happy to have found you all! Thanks, Chris S. Wolfman87@theGlobe.com
Jon, November 17, 2000 - Hi everyone, The Excel spreadsheet naming all the procedures discussed in earlier posts this week regarding Medicare can now be downloaded directly from this site. Just click here. Jon.
Tony D, November 17, 2000 - Hello, I don't post often but do visit the site nearly every day. This may be old news to some, but was new to me. There was an announcement from the American Heart Association identifying a new procedure to rejuvenate weakly pumping hearts by creating brand new muscle and blood vessels fashioned from cells scavenged elsewhere in patients' bodies. The announcement was made Sunday in New Orleans at the annual scientific meeting of the AHA. It was an Associated Press article that appeared in my local Wichita paper Monday. A Dr. Rose Marie Robertson of Vanderbilt University was quoted as saying, "This is incredibly exciting new science." Does anyone have any additional info on this? I am a CHF patient with an EF of 25% (stable). Tejmdecker@aol.com
Brenda C's November 18 reply to Tony D's November 17, 2000 - Hi Tony, I recall the old Mark Twain saying, "Believe only 25% of what you read, 50% of what you hear, and only 75% of what you see." <g> In the Vanderbuilt University experiment, what they are doing is taking the muscle from a patient's thigh area and transplanting it into the heart. However, this procedure is currently only being done on the left side of the heart muscle. They are also grafting some veins and arteries into the same area with the hope that they will expand (grow more pathways) to help alleviate blood flow problems. This is experimental and you have to qualify to be accepted into the study group. Of course, study of longevity or improved quality of life has not been concluded. This procedure will undergo a lot more scrutiny before it is accepted. Vanderbuilt University in Nashville is a leading teaching hospital in the United States, however most of their work is experimental and coincides with the University's policy of publish or perish.
There has also been some experimentation that is currently being looked into regarding one of the newer arthritis medications. This medication is used in patients with arthritis to reduce inflammation in affected joints. However, according to the medical news, scientists have discovered that the same medication also reduces heart inflammation in studied CHF patients. They are also experimenting with this medication on MS patients, saying that inflammation is the partial cause of problems that MS patients as well as CHF patients experience. So reducing inflammation in the muscle of both MS and CHF patients will allow them to work more efficiently. There again, like the reported procedure from Vanderbilt, this is in the experimental stage and has not been approved for use outside of the study group.
Tony, you may qualify for inclusion in the Vanderbuilt University study but you will need to talk to your doctor and get a referral before going any further. Your doctor, in turn, can get more information for you and find out if you are eligible. I wish you the best of luck and will keep you in my prayers. firstname.lastname@example.org
Jon's November 18 reply to Brenda C's November 18, 2000 - Hiya Brenda, French researchers have done what Tony was talking about. However, their research is phase one, meaning they are just making sure they don't kill the patient with the treatment. It is discussed on the loved ones' forum in my November 14 reply to Todd's November 14 post. More info on the French procedure, which included some brand new techniques, can be had from the mailing list "archive" available for download here.
Tony, the therapy you mention is very interesting, and may benefit patients who develop CHF after a heart attack sometime in the future. I just started looking at reports from the current Scientific Sessions today. Most presentations seem to be further reporting on therapies already described in my pages, such as the HOPE trial results on vitamin E, muscle plug transplants from thigh to heart such as Brenda described - an extension of Doris Taylor's research at Duke University explained here, arthritis meds as treatment for CHF as described here, and so on. I'll be continuing to read the articles coming out of the conference and will post new articles on my pages as long as they don't just repeat old news. ;-) I am currently very interested in the debate among heart surgeons as to whether CHFers with low EF and mitral valve leakage should have valve repair surgery or not.
Personally, I think the new therapies are great! I just have to exercise some discretion in what to put on my pages since therapies that are not available in the USA or which are only open to at most a dozen patients worldwide (for now) often raise false hopes; especially since reporters tend to exaggerate the actual usefulness of new therapies to those of us looking for help now. I do watch and follow all these therapies and hope that one day some of them may actually save my life or the life of my loved ones, but I have to season that hope with the reality that most of the reports at such conferences are preliminary and may conflict with later, longer trials of the same treatments. It sure is interesting to see what researchers come up with trying to make the big score of a successful treatment for us, don't you think?!
I would encourage people to ask about all new treatments here, as well as the standard ones. You never know when I am going to miss an important one. After all, I'm no more a doctor than anyone else here and there is such a flood of new therapies coming at us every day, it is impossible to read about them all. So read, read, read, and ask, ask, ask. It benefits us all (including me)! Never be afraid of looking foolish. After all, if I weren't so willing to make a fool of myself (ask any old timer here), this page wouldn't exist! <lol>Jon.
Jeanette's November 18 reply to Jon's November 15, 2000 - Hi Jon, I feel I goofed. I am not lacking sleep; my problem is that I can go to bed at 10:00 PM and get up at 10:00 AM and feel tired. I sleep but it is not a "rested" sleep like a normal person would get. Then I am up from 10:00 AM until about 2-3 hours later, and am so tired I go back to bed for 3 - 4 hours to sleep some more. I don't have insomnia - just the opposite. I found out yesterday that the sleep clinic will not be able to take me until February of next year, they are so booked up. I will be going in for preliminary tests after Thanksgiving. If anyone else has this feeling or does this, please let me know how you cope with it. Thanks, Jeanette. PS. Jon, thanks for all the encouraging words. It helps. email@example.com
Jon's November 18 reply to Jeanette's November 18, 2000 - Hey Jeanette, You didn't goof; I probably just misread your post. This is perfect timing in a way, since I just mentioned my willingness to make a fool of myself in public! <g> I experienced what you describe while in the hospital, and I know that others here have the same problem: that sleep doesn't seem to flush fatigue out of the system. I hope others with that problem will reply - maybe they have some tips for coping.
As for that sleep clinic, I wonder. My wife got a sleep study in our area's busiest sleep lab soon after her doctor ordered it. I wonder if your doc could exert some pressure (should he choose to do so) to speed up that process. Several months delay to investigate one of the most critical areas of human life - sleep - is absurd! It's just too important a part of quality of life to put off like that. Jon.
Robert N, November 20, 2000 - Hi, If anyone is interested, they have a no sodium white, wheat, and oatmeal bread that has the texture of regular bread at the Stop and Shop supermarkets in the northeast USA. They also have a very low sodium cheddar cheese along with low sodium pickles. They are all Stop and Shop brands so the prices are very reasonable. A loaf of bread is only $1.09. I hope this will help someone. I try to find low sodium products that I can afford. Good luck. firstname.lastname@example.org
Sherrell's November 20 reply to Brenda's November 18, 2000 - Hi, With my heart being really enlarged and pressing on the other stuff in my chest, I was experiencing pains that could not be attributed to problems with my heart other than possibly syndrome x. Finally one doctor said he felt the pain was coming from inflammation in that area due to the enlargement. So he ordered Celebrex, an arthritis drug. The pain is now controlled. So I think there is merit in this thinking. But just because it helped me, doesn't mean it's the treatment for all. email@example.com
Mary H's November 20 reply to Jeanette's November 18, 2000 - Hi, I had the same problem with fatigue. After sleeping through the night, getting my son off to school, and taking a good four hour nap I would still be so tired. After I was removed from my meds, this went away. This left me with the question of whether it is the meds themselves that promote fatigue and tiredness. It may not be the meds but it is odd that within a week of stopping them, it vanished. Talk with your doctor and question if the meds could be causing this. My first doc told me it had nothing to do with the meds or CHF. My second and current doc said just the opposite.
A catch-up note: I am still med free and so far so good. I even clean a house every day except Tuesday and have enough energy to clean my own and prepare supper every night. Once again, discuss the fatigue in detail with the doctor and if he won't listen just talk louder until you find a doctor who will listen. Thanks ya'll and continue to pray for better health, Mary. firstname.lastname@example.org
John Len's November 20 reply to Jeanette's November 18, 2000 - Hi Jeanette, Sleep clinics are notorious for being slow in everything they do. Maybe something at this site can help. email@example.com
Jon's November 20 reply to Jeanette's November 18, 2000 - Hi Jeanette, Like Mary, I thought meds were a major part of my fatigue, memory loss, and loss of ability to think clearly. So I went to my CHF doc with this theory and we worked out a plan for me to reduce my Coreg dose to only 6.25mg twice a day - down from 50mg twice a day. Surely this would help me think more clearly and be less tired. Well, it's obviously a complex and highly individual thing.
I would guess that if your heart doesn't need the meds, then the meds probably do make you really, really tired, and severely reducing them would be a big help (I do not think they should ever be stopped completely and my CHF doc agrees). However, if your heart does need the meds to ease its workload - like mine - it doesn't always work that way, as I found out. ;-) Reducing my Coreg made one difference: I learn entirely new concepts more easliy. However, it made no difference at all in my memory or in my fatigue. In fact, I was slightly more tired than when I took a higher Coreg dose. That definitely surprised me! I have since raised my Coreg dose to 12.5mg twice a day and will hold it there a while to see how it goes.
The other 2 drugs that might cause fatigue are probably diuretics and ACE inhibitors. As for diuretics, you and your doctor should be constantly adjusting these meds and then re-examining you physically until you get the mix right. Once it's right, you have to maintain a very steady lifestyle as far as exercise and diet go. You also have to be on the alert for lightheadedness or appetite changes, which can signal dehydration. Also of course, you have to watch for the other extreme, which causes swelling, shortness of breath, and sleeplessness. A carefully monitored and properly managed diuretic regimen won't make you tired.
ACE inhibitors are another story for me personally. I watched a dose increase pull me out of a very severe CHF episode. I want my ACE inhibitor dose high, even if it makes me tired. I strongly believe that this class of drugs is the prime weapon in a CHFer's arsenal to use against both current CHFand future CHF epsiodes.
Just my thoughts on the subject. I ain't no doctor ;-) The truth is though, that CHF meds by their very nature are going to add some fatigue to our lives. If we stop the meds while our hearts still need them, we'll feel more energetic to some degree for a while. Why? Because our hearts then speed up and work harder. Unfortunately, that puts us right back in the same vicious cycle that got us put on the meds in the first place. That's explained in The Manual and on the Coreg page though so I won't repeat it here. Personally, I'll accept some extra fatigue to add years to my life. It's a balance though, obviously. Jon.
Anna N's November 20 reply to Jeanette's November 18, 2000 - Hi Jeanette, I know exactly what you are talking about. For about a year before I was diagnosed with DCM, that was happening to me. I'd go to bed very early, get up still tired, even fall asleep at work, stop at my parents' to take a nap before I could accomplish the 45 minute drive home, and always spend the whole weekend sleeping. I was always totally fatigued. When I finally found out what was wrong with me, the doctor said it was because my heart was functioning so poorly. It has gotten better but when I have a bad day, it's still like that. Nothing really helps a lot but getting some fresh air sometimes helps a little. Does anyone else have a solution that works? firstname.lastname@example.org
Roger's November 20 reply to Jeanette's November 18, 2000 - Hi, I don't know if this is a coincidence or not, but like you, I was always tired. Same as you, I needed to sleep for a couple of hours, then awake a couple, then nap again. The only difference is that I am still working. It is only a desk job mind you but still tiring, none the less. Someone suggested to me to try vitamin E so I did, at 400IU twice a day. It has seemed to give me a bit more energy. They say my heart is shrinking and my EF is up to 45% now but I still suffer SOB a lot and I am still tired, although not as badly as I used to be. Perhaps give it a try and see if it works for you. I don't think it could hurt us in any way. Good luck. email@example.com
Joni, November 20, 2000 - Hi everyone, My name is Joni, and I'm new to the group. I was diagnosed with CHF a year ago. My initial diagnosis was walking pneumonia and I was sent home with antibiotics. The next day or so, I was in the hospital and placed on a ventilator for about 2 weeks. Since that time I've had an ICD for VT, and was placed on the heart transplant list due to severe heart failure and experiencing class 3 symptoms. Within 2 weeks of being placed on the transplant list I received a call for a potential heart but do to the crossmatch, it was not compatible. About a month after that, I was removed from the list due to an increase of my EF from 20% a year ago to approx 40% but I still am experiencing class 3 symptoms. The med center I have been going to is at a loss as what to do with me, since I have shown an increase in EF. My doctor has offered to refer me to the Cleveland Clinic. I'm looking for some info on the Cleveland Clinic. If anyone has gone there, what did you think about them? firstname.lastname@example.org
Cecil C's November 20 reply to Joe S' November 16, 2000 - Hi Joe, Concerning your loose teeth, I have many loose teeth too, and have felt like they were all going to fall out at one time. By accident I found in Albertson's Biotene tooth paste and mouthwash. This relieves the dry mouth we all experience from taking all these drugs as well as replaces the saliva which normally removes a lot of bacteria. I've been using it for about 2 weeks and my teeth are beginning to tighten up and my dry mouth, which was causing me to drink too much liquid, has also been much reduced. Try it and let me know if it works for you. I was already taking CoQ10 but nothing was happening. email@example.com
Jeanette's November 20 reply to Jon's November 18, 2000 - Hi Jon, You are correct - waiting until February is ridiculous! However, I spoke with my cardiologist and he said he could do nothing about it. However, when I talked to his receptionist she called the sleep specialist and made some headway because I am at least getting the ball rolling and having the preliminary tests done after Thanksgiving. The problem lies with the clinic. They are so booked it is unreal. There are 4 hospitals that have sleep clinics, I called them all and they are further booked into March and April. I live in a large city and we all must have the same problem. I guess it's the water. <g> Thanks for the imput, I really appreciate all you have done. Take care, Jeanette. firstname.lastname@example.org
Cindy, November 20, 2000 - Hi, Do many CHFers suffer from what is diagnosed as sinus or allergy problems? I am curious as to how widespread these type of problems are. email@example.com
Mike J, November 20, 2000 - Hi Jon, Thanks for the info on your colds and sinus problems and breathing difficulties. It is a very scary thing and I may have panicked. My doctor told me I would be okay and I feel very good now. My doctor must have been right because I feel great now after taking a new antibiotic called Avelox. He said it would cure my sinus infection but after reading the info, it is good for about anything in the upper respitory tract. I am still working out 3 times a week in the gym and have not felt tired except for the time I had the sinus infection.
Again, thanks for you info and for this site. I go to the cardiologist in January and am hoping to be as good as I am now. My DCM caused a reduction in EF down to 40% and I feel good that I get around as well as I do. firstname.lastname@example.org
Jon's November 20 reply to Mike J's November 20, 2000 - Hi Mike, I had sinus problems before CHF but they are much worse now. I also take 1200mg Amibid LA (guafenesin) twice a day and that has reduced my sinus problems greatly. It's important to get the LA version though - long acting. Jon.
Barb L S' November 20 reply to Joe S' November 16, 2000 - Hi everyone, We have moved in to a new home that we all love. Joe, I lost a tooth last week and it scares me. I never wanted to bring the question up for several reasons; one being that I knew there was a correlation between heart disease and tooth decay. Also, there was embarrassment and the general overall feeling of feeling icky. At Temple when I had my first transplant evaluation, they took out 4 teeth because of infection risk. I've lost 3 more in the past year. I do take CoQ10 and swear by it as far as my heart. I've been told that my calcium is too low. Every time I become anemic, they find something else it also affects, including my calcium. Ask your doctor to run some blood tests on iron, potassium, calcium, and magnesium. Many docs forget or just fail to check for calcium. Take care and never forget that someone in Jersey is going through the same thing. God bless, Barb. Alikeys@hotmail.com
Barb L S' November 20 reply to Jeanette's November 20, 2000 - Hi Jeanette, I hope you start feeling better. I go through the same thing. I thought you were having the opposite problem: insomnia. I have slept long and hard on most days and wake up feeling as if I didn't close my eyes for a minute. For me, this causes my hours to flip-flop. It's now something like 3:00 AM. That's why I'm here. I do go back to sleep on many days. My body and brain have a mind of their own and it gets depressing. I cry a lot as an overreaction to a lot of things because we need our sleep! We need to feel rested. I never feel rested. All I can offer you is that you're not alone. My doctors all say the same thing, "It's your heart." Thank you but I kind of figured that one out! I agree with Jon. Talk to someone and see if you can't have your test moved up. Make sure you don't get more upset in that process, though. I'm here if you need me. You're kind, caring and giving. An answer will come. May God bless you, barb. Alikeys@hotmail.com
Jeanette, November 20, 2000 - Hi everyone, All of you were helpful. To reply to Mary, I can't stop my meds. I am on the lowest dose for me and if I stop them, I will die. It isn't the meds, I have been on them for over 2 years and this started only 6 months ago. To Jon, thank you, my Coreg is at 6.25mg twice a day and can't go any lower and work for me, Lasix is at 40mg and Zestril is at 20mg. This is all I can handle and so far, so good. To Anna, I don't work so I don't have extra pressure on me but thank you for the input. To Roger, I will definitely try the vitamin E, can't lose if doesn't work. To Barb, my guardian angel, thank you so much for the kind compliment, right back at ya. You always know how to make me feel a little bit better. :-) I want to thank all of you for the input and will make suggestions where I can. God bless all of you and please take care. Have a great Thanksgiving. To all, peace, love and kisses, Jeanette. email@example.com
Tonya Dean, November 21, 2000 - Hi, I just wanted to tell Jon and everyone here on this site to have a wonderful Thanksgiving! It will be one year since my diagnosis of PPCM and CHF in December, so this is my very first Thanksgiving since then. I truly feel blessed and extremely thankful each and every time I look at my healthy daughter. The Lord works in mysterious ways. Before my diagnosis, I was pretty much a "pew sitter" at church. Now I am so much more involved and it means so much more to me. I hope all of you have many things to be thankful for this holiday season and may God's love shine down on you! Tonya. firstname.lastname@example.org
Leeann D, November 21, 2000 - Hi, I'm an old-timer and now part-timer, but I do read a lot more than I post! I just wanted to put in my 2¢ worth about the sleep thread. I have definitely noticed that when I sleep more than 8-9 hours, I am a lot more tired the next day and need naps, hang out on the couch, etc,... When I get into a good schedule of eating around the same times, exercising around the same times (even just a little walk) and staying in bed only 8-9 hours, I feel much better. This may sound too simplistic to many CHFers but I do think that healthy eating, exercising and scheduling really keeps your body on track. It is very common to feel exhausted when you sleep too much. I know this isn't the case for many, but it's just one possibility I'm throwing out. Leeann, age 40, yep I made it to 40. I bet no one here remembers me. email@example.com
Jes, November 21, 2000 - Hi, Does anyone here have right side heart enlargement? firstname.lastname@example.org
Tracey C, November 21, 2000 - Hi Everyone, Does anyone know of a low sodium stuffing recipe? I've searched but can't locate one. I wish everyone a wonderful Thanksgiving and God bless, Tracey C. email@example.com
Chris' November 21 reply to Joni's November 20, 2000 - Hi Joni, I just wanted you to know that I had knee surgery at the Cleveland Clinic many winters ago and they were great. John Bergfeld operated on me and he was and is maybe still the Cleveland Browns' team orthopedist. I am not sure if this helps other than to say that they have a good reputation for a lot of areas in medicine. Good luck and hang in there, Chris. Wolfman87@theglobe.com
Jon's November 21 reply to Joni's November 20, 2000 - Hi Joni, I had one person write me about his mother's valve repair surgery done at the Cleveland Clinic. He was very pleased and so was she. The surgeon was Dr. Patrick McCarthy. Jon.
Shelby, November 21, 2000 - Hi, A week ago (after 4-5 tests) while sitting on the patient examination table, my internist walked in, sat down, opened my record folder, looked at it, and told me that I had congestive heart failure. Shocked? Yes! He told me about my weakened heart function and why liquid was in my lungs, but this and other web pages have helped me understand what's going on, and why I'm on diuretics. Thank you Jon, for providing this page! firstname.lastname@example.org
Ben B's November 22 reply to Leeann D's November 21, 2000 - Hi Leeann, I remember you. You are one of the people who have had dramatic improvements in EF whom I have been trying to coax into posting again to encourage others with low EFs to take heart. Glad to see you are doing well. email@example.com
Pat Y's November 22 reply to Tracey C's November 21, 2000 - Hi, You can find a complete low sodium Thanksgiving dinner at http://www.megaheart.com. Just click on "Newsletters" and then go to "October." You will find recipes for a complete dinner. I hope everyone has a great Thanksgiving holiday. PTYoumans@aol.com
Jon's note: Karen K sent me a whole low sodium stuffing recipe but I won't get it on Kitchen Corner in time for Thanksgiving
Rieale's November 22 reply to Joni's November 20, 2000 - Hi Joni, I can understand your apprehension about going to a new facility for treatment, but I can tell you from my experience that Cleveland Clinic Foundation is one of the best places you can be at when you have heart failure. I'm 23 years old and was diagnosed with idiopathic dilated cardiomyopathy in January of 2000. My doctor referred me to Cleveland Clinic and I had my first visit in February. The place is run so expertly that you will probably be amazed. I see Dr. Randall Starling (heart failure specialist) and Walid Saliba (electrophysiologist).
For the first 6 months, I was put on the CHF cocktail of Coreg, Lasix, Lanoxin, K-dur, Accupril and spironolactone. My evaluation was done at the 6-month mark and I found out that my EF had not risen from the initial 15%. Instead of forcing me into a course of treatment, Dr. Starling made me aware of all my options, including keeping things the same or becoming a participant in a trial. It was very scary but ultimately I decided once I was informed of my health and my options, to participate in the InSync ICD trial. Here I am a month and a half later, feeling better than I have felt in a long time. I'm not saying this is the right decision for everyone and I'm not even sure it will ultimately be right for me but I'm just telling you this so you know that Cleveland Clinic is a wonderful choice. If you are lucky enough to get in there, I highly suggest you jump at the chance. The Clinic is abreast of new technologies, a lot of clinical trials, and very well informed doctors who will be honest and caring. Please feel free to contact me if you want any more information or if you just want to talk. Rieale@aol.com
Wendi, November 22, 2000 - Hi everyone, I had rheumatic fever twice as a child and now have mitral insufficiency. I take 20mg Lasix. I also take Vasotec. Does anyone know if this is an ACE inhibitor? I have a deep fear of having to have valve replacement or if things are gone too far, of getting an extremely enlarged heart. It was borderline enlarged several years ago. Does CoQ10 work? Does anyone know if an enlarged heart can go back down in size? When I was 12, one side of my heart was twice as big as the other and I was on the verge of heart surgery but one week later my heart was normal. I attribute this to much prayer by grandmother and church. I have 2 children and am 43 years old. Is exercise a necessity? I sleep well and do not have much fatigue; just burping a lot (possible hernia). Thanks for any input. Happy Thanksgiving. firstname.lastname@example.org
Mary Lou L, November 22, 2000 - Hi I know we will all be busy for the rest of today and tomorrow, so I'm sending my greetings to each and every one of you now. Have a very happt Thanksgiving, everyone. This is a time to reflect and appreciate family and friends, as well as all that we have to be thankful for, Mary Lou. MLBinks@aol.com
Terri, November 23, 2000 - Hi everyone, I've been reading for months - life saving site, Jon! I'm one of those people whose EF improved substantially within the first 6 months (from 5% to 45%). Sadly, I'm finding it hard to feel grateful for this statistical improvement since I'm being taken off disability but don't really feel better. The tremendous fatigue and bouts of shortness of breath are still with me. I walk for 30 minutes a day, 6 days a week, but at a pretty slow pace. My daily activity is limited to minimal housekeeping (tub hasn't been scrubbed in ages) and driving the kids to games and practices, but it wipes me out. The notion of a job hunt and subsequent return to the old parent-commute-work-commute-parent routine terrifies me. Has anyone else seen a significant EF improvement without a corresponding rise in quality of life? For those who are working full-time, how do you manage to cook properly and get sufficient exercise and rest? email@example.com
Jon's November 23 reply to Terri's November 23, 2000 - Hi Terri, I am in the same boat - to an extent. My EF has gone up slowly over 5 years from 13 to 40%. However, I feel worse now than I did with an EF of 13% - considerably worse! I expect to have real problems with my SSD also, when it comes up for a review. On the bright side, I informed SSD when my Vo2max went up from 13.5% to 20% and that didn't trigger a review. I can't answer the rest of your questions so I sure hope others post. Jon.
Jon, November 23, 2000 - Hi everyone, I am sorry I missed the chat session last night. I did not sleep at all Tuesday night so my brain was pretty mushy by chat time. Posts may be late tomorrow too because I have to cook at the time of day I usually do posts. I'll get to them, though. :-) Strangely, it isn't Thanksgiving cooking! Jon.
Joe S' November 23 reply to Wendi's November 22, 2000 - Hi Wendi, There is great hope. I had Rheumatic fever too, when I was five, and I developed the same thing, with a very enlarged heart. I am 62 years old now and feel better then I have in 20 years. Yes, exercise helps a lot but you should get your heart beating fast when you do.
Yes, CoQ10 works great. Two years ago I was declared 100% disabled with CHF. One year ago I moved to a high, dry climate where I could take long walks without fear of the locals. Now all I have to worry about is the occasional mountain lion and bear, but my big German Shepherd keeps them at bay. Excercise, diet, and following all the things that Jon advises on the board; plus using distilled water, taking magnesium and the like has made my CHF either go into total remission or completely disappear. When I asked my doctor about having my heart valve replaced, he told me to live with it because any invasive surgery is dangerous. So now I still go on my two 2 mile walks twice a day, eat right and follow Jon's advice. The only thing I still can't do is walk uphill very fast - but who cares?! Joe S. firstname.lastname@example.org
Shirley's November 24 reply to Terri's November 23, 2000 - Hi Terri, I am in the same boat. My EF has improved greatly in the last year, up now to 45%, but I don't feel much better than I did before. I am worried about where I will get the energy to return to work if I lose my SSD too. I don't know what the solution is to our situation but at least we know we are not alone! Shirley. email@example.com
Richard H, November 24, 2000 - Hi, I'm new to these boards, but not to cardiomyopathy and CHF. It's been a real roller coaster course, with good times and very bad ones. Things are getting bad again. I do miserably (breathing, insomnia, stamina, abdominal pain) when in atrial fibrillation. Well, I've been in it for 2 months now and am feeling pretty bad. Specialists have tried lots of drugs and procedures. The last was A-V node ablation plus cardioversion, which held for only 3 days using Tikosyn as an anti-arrhythmic. Now I am pacemaker dependent. Even with the A-V node ablation and happy beating ventricles I have tremendous symptoms and haven't worked for a month. Does anyone have ideas of things, tricks, I could do to minimize, get through, accept or ignore these symptoms, and be comfortable enough to get back to work? Thanks for any help, Rich Hennion. firstname.lastname@example.org
John Len's November 24 reply to Wendi's November 22, 2000 - Hi Wendi, I have had rheumatic fever twice as a kid; at age 10 and again at age 14. However, it did not affect my heart even though I was in the hospital for 2 months the first time. As to the heart valve, I have a brother in law with 2 valves replaced with pig valves. That has been about 6 or 8 years ago and he just turned 84 yesterday. They have given him no problems. email@example.com
Brandy, November 24, 2000 - Hi, I hate to be the rope that drags everyone's spirits down but I am just so discouraged at this point. I am 21 and now have peripartum cardiomyopathy. It is a result of my pregnancy with my youngest daughter, who was born in February of this year. I am in the "I can't believe it happened to me" stage. I mean, I knew I could get lung cancer from smoking, AIDS if I slept around, and lice if I shared a hair brush, but heart failure for having a baby, that was just something I never dreamt.
I am told the stupid "5 year expectancy" over and over and over again, and I just want to crawl into my shadow and forget this whole horrible nightmare. My symptoms have been getting worse and worse. I am on metoprolol and Zestril. I am so tired I can barely leave the house, and have more skipped beats than a new drummer. I would suffer every day and never mention the symptoms if I could just live long enough to make sure my children will not feel abandoned when I die.
I can barely enjoy the life I have now. I have an ejection fraction of 30% (I did in June anyway) and my left ventricle was "mildy enlarged." Does anyone else feel great for a few weeks and then like poopy-doo the next two? Just aching for some support. I hope everyone else is doing well, Brandy. firstname.lastname@example.org
Wendi's November 24 reply to Joe S' November 23, 2000 - Hi Joe, Thanks for the uplifting news. I had been praying for some encouragement about my condition, and I think you were the answer to my prayer. Can you believe that I've never even been told about the magnesium factor?! I clicked on the keyword and some of the symptoms associated with a deficiency hit home. Are ordinary over the counter supplements okay, do you think? I have muscular soreness in my upper back and have noticed that I have twitches, for want of a better word.
I hope you continue to do well. I really feel that I do exceptionally well, since as a child I was told I could never have children. As I stated above, I have two: a 24 year old and a 19 year old. I do have some shortness of breath and think I sigh a lot, which was also another sympton of low magnesium levels. I'll let you know how I do. Thanks again, Wendi. email@example.com
Wendi's November 24 reply to Cindy's November 20, 2000 - Hi Cindy, I suffer from lots of allergy and sinus problems too. I take allergy shots once a week as well as a daily clariton or zyrtec. Fortunately, I work for an ENT (ear, nose, throat doctor). I wonder if the sinus problems especially have anything to do with fluid retention. Do you know what Avelox is? I haven't had a chance to ask my doctor about it. firstname.lastname@example.org
Jon's note: Avelox (moxifloxacin) is an antibiotic. It is used to treat bronchitis, pneumonia, and sinusitis.
Patricia, November 24, 2000 - Hello everyone, This is my first post. I have CM, CHF, TIA, PH, and an EF of 20%. I've been feeling weird the last couple of days. I was in the hospital in late September with pnuemonia and for the last 2 weeks I have had the flu. I seem to be getting over it but now I find when I go to bed at night my heart starts beating crazy and I get sick to my stomach. I also notice my left side is killing me below my left breast. Has anyone had this feeling before? I've been to the emergency room before with this and my heart doctor told me I will not have pain in my chest with my heart condition. He said I'd just stop breathing. Any answers? I've lost faith in my doctor. Help!
I hope everyone out there was blessed with a happy Thanksgiving. email@example.com
Jon's November 24 reply to Patricia's November 24, 2000 - Hi Patricia, Welcome to Jon's Place. I can only say that your docor is a putz, like many others. Angina (chest pain) is not "usual" for CHFers who have clear arteries but it is certainly not unknown. I get it myself and since nitro works, it is obviously classic angina, despite my arteries being clear. I strongly suggest that you start looking for a new doctor, preferably a CHF specialist. Jon.
Bob H, November 25, 2000 - Hi, I must get in here and apologize for not contacting someone and letting someone know that I am still alive and kicking (but not too high). I have been up north on vacation visiting grandkids and other relatives. My health is still so-so but I am alive and for that I am very thankful. The good Lord has been taking care of me. Last Saturday morning I received a long distance telephone call from Tom Watkins inquiring into my health and well being. I had forgotten how this group really sticks together and worries about each other. I am very appreciative to Tom and all the others who were wondering what had happened to me and worrying about me. You are a fantastic group of people and I want to thank y'all and apologize with all my heart. I am sorry and I won't let that happen again.
I will be attending the chats as often as possible because I remember when it was Tom and I, sitting up there talking to each other or me and Sarah. There are a few regulars who always try to drop in but I sure would like to see a lot more new people show up and grace our presence with theirs. There is no way that anyone can completely thank Jon for this fantastic site but I for one want to acknowledge that it is the greatest site for information about the heart that is on the Internet. God bless you all and come on out to the chats and talk with us. Peace and love, Bob H. firstname.lastname@example.org
Ben B's November 25 reply to Brandy's November 24, 2000 - Hi, I was calm until I read your letter, where I saw the infamous 5 year statistic which is my pet peeve. It totally infuriates me. Do not believe this. Anybody who tells you this statistic is really behind the times, especially for a 21 year old with PPCM. PPCM is one form of cardiomyopathy with a better than average prognosis. This is based on real, up to date studies as opposed to the 5 year statistic. I still cannot believe anybody still quotes this dinosaur. I suspect some of your bad feelings may be due to depression over the mistaken notion that your time on earth is short. Don't believe this. email@example.com
Robin Lynn's November 25 reply to Terri's November 23, 2000 - Hi all, I wish everyone a great holiday season. Terri, when I read your post I knew I had to write to you and any other person out there who can't bend and scrub the tub very often. Get Mr. Bubbles! I'm telling ya, when you spray that stuff on you can see the grime melt off. It is not as good as hand scrubbing but it is at least cleaner than without it. I also use those quick wipeups around the bathroom. I find it freshens the place up without the fumes of bleach and other cleaners.
I would like to put some info in about the fatigue thing too. I also thought that getting off the meds would be a help. After a week, I was disappointed that I was back into the fatigue thing. The biggest improvement was when I stopped my ACE inhibitor, which was not really the best idea. I think my next appointment will see me back on my meds. One thing that has me puzzled is that while my EF went up, my heart continues to enlarge. With my EF at 45%, I still don't feel all that great. My legs feel better (off the meds). They don't get to hurting as bad and they are not so tired that they feel like they will fall off. They do hurt when I take long walks though. I still require a lot of sleep or I will just veg out on the couch.
Jon, I read the article about gum disease and heart disease, and I really think they are wrong in a way. I have always had my teeth cleaned every couple of years. I brush regularly and floss every night. I have never had a problen with build up or cavities until this last appointment about 2 months ago. The build up over the past 2 years is so severe that they have to lift my gums to get to it. There is one place where it has affected the bone. I now have 4 small cavities. The hygenist said it looked like I never had them cleaned. I was diagnosed with IDCM 2 years ago and I know for sure that all this has just presented itself in the last year. I personally am not going to challenge the experts as to whether poor oral hygene leads to heart problems or vice versa. I tend to think that it is the heart that leads to tooth decay and gum disease. I will stick to the 6 month treatment now, although they reccommended every 3 months. I am 36 and have never had a problem with my teeth and I do not fall in the category of poor dental hygene. I feel for all of you whose teeth are falling out. I also have 2 top teeth that have to be surgically removed due to them dropping down.
Now for my update: It has been over 2 weeks since my ablation and this morning I had 3 short runs of v-tach that woke me out of my sleep. Thankfully, I was wearing my monitor and caught them. I go to my EP doctor Tuesday. I am a bit disappointed about the runs. I was hoping that he had gotten the one and only place that was causing it. Oh well, here we go again! Bye for now. Blessings, Robin Lynn. firstname.lastname@example.org
Jean C's November 25 reply to Patricia's November 24, 2000 - Hi, I second Jon on the angina in spite of your arteries being clear and finding that nitro helps. On getting sick to your stomach at night, you might try eating earlier in the afternoon rather than in the evening, and if you still get sick, try a Tumms. I've found that these tricks work for me. Of course, you can always get up and watch TV, which is almost sure to put you to sleep late at night. Do try to find a doctor who will listen to your problems and remember that since you've had the flu and other stuff, all those problems might not be heart related. I hope you feel better soon, Jean C. email@example.com
Jeanette's November 25 reply to Brandy's November 24, 2000 - Hi Brandy, Take a deep breath and calm down, okay? ;-) Number 1 is to read The Manual. There are a lot of things you were told that are not necessarily true. Everyone is different. I have dilated CM and have done fine for over 2½ years. You are proabably not going to die, at least for awhile. The 5 year expectancy thing is what they all give us but look at Jon; he has had DCM and CHF over his 5 years and is still going.
Read The Manual, take a break, and relax. I know it is hard when you feel like "poopy-doo" as you call it. I am tired all the time too but feel it could be attributed to sleep apnea. Sometimes the meds you take can do it to you too, depending on how long you have been on them. Medical technology has come a long way and they are working on new methods every day to help us. If you would like to talk, just e-mail me. I'd be happy to chat with you. Also, look in the Who's Who and Me Too! pages for other women who have PPCM. I have seen a few of them listed and I am sure they will be able to help you too. One of them is LaLaKimmie. She even had a web site for women who have your disease. Check it out. She is very nice and I am sure she will be able to help you. Take care and good luck, Jeanette. firstname.lastname@example.org
Thelma, November 25, 2000 - Hi, Does anyone have any experience with CHF specialists in eastern/northeastern/western Iowa? Please e-mail any good or bad experiences to me. Thanks. Tcull@prodigy.net
Brandy, November 27, 2000 - Hi to all, Gee, when I re-read the post I posted on the 24th, I think, "I can't believe I felt that way. I was a bummer." I am going to look for a new doctor after I go for my echo on 12/4. If this doctor chooses not to listen to me and give me something positive, then I will be on my way. I need all the prayers I can get for this coming echo. I'll be happy to just stay at EF 30%. I just don't want to keep getting lower. Thanks to all who e-mailed me encouragement. I actually got an email from a guy I go to cardiac rehab with - small world. This place rocks! Brandy. email@example.com
Thelma, November 27, 2000 - Hi everyone, My last post was incorrect. I'm specifically looking for a CHF specialist in the Omaha area or western Iowa. I'm not sure where my brain was during that post! Thelma. Tcull@prodigy.net
Ted, November 27, 2000 - Hi, Assume that significant heart enlargment has occurred in a matter of months as a result of atherosclerosis. If a bypass is done to remedy the blockage, is the cardiac enlargment likely to persist in most cases or is there a possiblity or probability of regression or resolution of the enlargement? firstname.lastname@example.org
Jeanette's November 27 reply to Robin Lynn's November 25, 2000 - Hi Robin, I tend to differ with you about the heart causing the gum disease. I have been seen by my dentist and have this problem. She says that it may have attributed to my heart problem. I have a regular regimen of teeth cleaning too and like you, I floss and brush every night. However, no matter what I do, I still get cavities and have problems with my gums; and have since before my DCM over 2 years ago. I asked my cardiologist about it and he agreed that my gums may have helped contribute to my DCM, even though I had mt teeth cleaned regularly. I have lost 2 teeth because of the disease in the past month. I really can't say heart disease did this but maybe the meds you are on are contributing to this problem. I know my meds cause me all sorts of problems with my teeth and there is really nothing you can do about it. I just brush my teeth more often and see the dentist more than every 6 months. Take care, Jeanette. email@example.com
Ron P, November 27, 2000 - Hi, I just found this wonderful site today. I was 69 November 21, and have been diagnosed with CHF by my cardiologist. He has put me on Coreg, now at 12.5mg twice a day. I have 5 stents. I do not yet understand all the abbreviated terms you folks use. All of you seem so knowledgeable about this disease, it makes me feel pretty stupid. The doctor told me to quit work and I sold my real estate business, and I am training a young preacher to take over my ministry. My doctor seems more interested in doing angioplasties every 2-3 months than anything else. We don't have a CHF doctor closer than Dallas, I don't think. Do you need someone fairly local, so you can see them regularly? I don't know how to do the chat thing that y'all are talking about yet. Praise the Lord for Jon and for this great site. May the Lord bless all of you and your families. My wife Ruby has heart disease also. She had Rheumatic Fever as a child. God bless, Ron. firstname.lastname@example.org
John Len's November 27 reply to Jeanette's November 25, 2000 - Hi Jeanette, Have you looked into the sleep apnea chat mentioned in my earlier post? There are a lot of good people over there. email@example.com
Brian's November 27 reply to Wendy's November 22, 2000 - Hi, I had Rheumatic Fever also and had valve replacement at age 25. I'll be 50 in March. They reduced the size of my heart be cutting it away. I believe it affected the electrical paths and I never got back into sinus ryhthm. Anyway, don't be afraid of replacement valves if you need them. I'd stay away from pig valves. Mine only lasted 7 years and going through the replacement isn't fun, and they don't like to replace them often, something about the mortality rate.
About Coreg, my EF is back up to 53% from the low 30s. Yes! I feel pretty good. My Coreg dose is now 12.5mg twice a day. My pulse was too low for more. Jon, would bike riding be an okay exercise? Best to take it easy? Thanks, Brian. BPGrber@yahoo.com
Jon's November 27 reply to Brian's November 27, 2000 - Hi Brian, Bike riding is a good exercise. Start easy but slowly work up to a decent effort. Jon.
Krista L, November 27, 2000 - Hello everyone, I linger here quite often but don't post much. I'm 25 years old and was just put on the heart transplant list about 2 weeks ago, after trying to get my CHF under control for the past year. I'm actually very optimistic and excited about it even though it will create a new set of problems to cope with. My problem is that I still work full-time and my employer recently switched insurance companies. The new insurance company says that there is a 6-month waiting period for all transplants, meaning I would not be covered for a transplant until April 1, 2001. The area I live in has a very short wait for transplants (3-6 months) and maybe even faster for me since I am a smaller person who does not require a large heart. I also have an individual insurance policy that will cover the transplant but I really did not want to use that since it has a lifetime maximum. My transplant coordinator said that if the right heart comes through before the waiting period is over, they will perform it anyway and figure out all that other stuff later.
There is also an insurance coordinator who is working this issue, but I wanted to see if anyone knew of any laws or that sort of thing which could prevent insurance companies from doing this. I am aware of the Health Insurance Portability and Accountability Act (HIPPA) which says that if you are covered under group insurance from an employer for at least 12 consecutive months that as long as there is no break in coverage, the next group insurance cannot deny coverage due to a pre-existing condition. I was covered by the same employer for about 1½ years before the switch and really had no choice in changing. Does anyone know of something that would override or disallow this waiting period? Thanks so much! Krista. firstname.lastname@example.org
Madelyn J, November 27, 2000 - Hi everyone, This is not a CHF question. It is just a story of a family emergency that may educate others. My husband Tom's parents almost died of carbon monoxide poisoning on Thanksgiving night. His mom woke up in the middle of the night to go to the bathroom and found herself nauseous and unable to walk or think clearly. She thought she was having a stroke, so she managed to wake his dad. While she was struggling to put on something like a robe, still unable to stand up, she noticed that his dad didn't get out of bed. He was too disoriented to even try to walk. She managed to get to the phone and call 911. They were rescued and spent several hours receiving oxygen at the hospital.
The gas was from their furnace, which had been acting up lately. They had a repairman out earlier on Thanksgiving Day, who didn't foresee this problem. Their house and furnace are only about 6 years old. The CO levels found in their house by the rescue team were extremely high. There is no way his parents would have survived the night if his mom hadn't woke up. Needless to say, they are getting a new furnace and we bought 2 CO detectors. I hope most people are smarter than us and already have one. email@example.com
Ernest, November 27, 2000 - Hi to all of you out there, My Coreg dose was reduced from 25mg twice a day to 6.125mg twice a day. Now I am able to do much more and I have much more energy most days. I don't believe that Coreg really helped me because my EF actually decreased from an initial 40% to 30%. I have been on Coreg for 4 years. My CHF doctor thinks that is because I have a lot of dead heart muscle. Who knows? I will just keep on trucking as long as I can. Good luck to all of you, and thank you Jon, for this forum. Ernest. firstname.lastname@example.org
Tracey C, November 27, 2000 - Hi Jon and everyone, I hope everyone's holiday was wonderful. I've been reading the dental-related posts and can relate because a year ago I had normal x-rays and now I need 2 deep cleaning sessions and 6 cavities filled. My question is that they won't use Novacaine because they say it speeds up the heart, but instead will use Lidocaine. Has anyone used Lidocaine instead of Novacaine and if so, did you have any adverse side effects? Thanks so much and God bless, Tracey C. email@example.com
Carol M, November 28, 2000 - Hello everyone, I just got home from spending 2 weeks at the rest home, also known as a hospital. <g> It seems that I had a heart attack. My husband woke up during the night as usual to go to the bathroom and discovered that I was not breathing. He called a meat wagon and did CPR until it arrived. They did their thing and worked their magic. So now I have one more thing to add to my list of ailments. They said it was a blood clot that broke loose from a bruise on my hip I got from a fall. Who would have guessed? But I'm at home now and taking it easy as prescribed.
I still have not worked up the courage to have the EP study; maybe someday. Jim, my husband, is really pushing for it now. What to do? It has taken me awhile to catch up on all the posts for the last 2 weeks but some of them were very interesting. Most of you seem to have it so together. I wish I did. Take care and have a happy holiday season. Love and best wishes to all. firstname.lastname@example.org
Patricia's November 28 reply to Jean C's November 25, 2000 - Hi Jean, Thanks for the reply, and you too, Jon. I have tried Tumms, Rolaids, Prevacid and eating early in the day. My pain is increasing with nausea. I called my doctor today to get in to see him and they said their computers were down but they would get back with me. I guess that with no reply yet at 6:30 PM, I am definitely in search of a new doctor. It is getting hard to even breathe with breathing treatments and my oxygen. It looks like a trip to the ER! The doctor said in May that I need a heart transplant but I'm still waiting for him to send me to get evaluated. He said I need to lose 70 more pounds. Is anyone else having this trouble with their doctor? Thanks everyone, I feel a little better getting that off my chest. email@example.com
Mike J's November 28 reply to Brandy's November 24, 2000 - Hi Brandy, Ditto on the 5 year rule being wrong, wrong, and more wrong. Read the info on this site and do not give up. Your attitude is one of the biggest things you have going. With the modern medical treatments and the progress CHF doctors are making, we can all look forward to a better and longer life.
I was told last June that I had a 85% chance of living 10 years. I have a DCM. When I first went to the doctor, I couldn't breathe very well and was not well at all. He encouraged me to lose weight and take my meds. I followed his advice. I still have trouble with the weight but with the help of prayers and this site, I now work out 3-4 times a week in the gym and have a full time job. I am 53 and have an EF of 35-40% depending on to whom I listen. I feel very well and I refuse to listen to the 10 year rule, much less the 5 year rule I was given at first.
I will be kicking when my kids get through college and beyond, and no one can make me feel any different. You hang in there and get some good doctors to take good care of you and you'll be here a long time. God bless you and you are in my prayers. firstname.lastname@example.org
Mike W's November 28 reply to Tracey C's November 27, 2000 - Hi Tracey, Off the top top of my head, it strikes a chord that lidocaine is the drug that enhances the anesthetic quality and increases the heart rate while novocaine (the old "original" dental local anesthetic) is the one that CHFers should be given. I won't bet a lot on it but I think that's how it goes. Peace, Mike Wafkowski. email@example.com
Cathy, November 28, 2000 - Hi Jon, Thanks for the mesage about my son Greg. He is still having tests and not many answers yet. The doctors think it is a sack of fluid on the good side of his heart. The cath did not show it 2 weeks ago yet it shows up on other tests and gives him a crazy EKG. He is trying to keep a positive attitude and it does help to know others are out there with same and similar problems. I am doing well with my CHF and do all I can to keep him asking questions. Thanks for the cards and letters; He likes them. I will keep you posted on the test results. Thank God for Jon's Place, Cathy. firstname.lastname@example.org
Nereida, November 28, 2000 - Hi, I have been diagnosed with dilated cardiomyopathy for 2 years. I am currently taking Coreg. At the time my was 35%. Right now I don't know what it is because I haven't have an echo lately but I don't think it is good because I feel very tired all the time, and I can hardly walk or carry anything heavy. Sometimes at night when I finally go to bed I don't know how I survive the day. I guess my family keeps in me check. That is the best medicine I have, and God. Nere584@aol.com
Carol M's November 28 reply to Krista L's November 27, 2000 - Hi Krista, Contact your (state's) Insurance Commissioner in your area and find out what the laws are there. Explain the entire situation with the change in insurance companies and their coverage. Also explain your health situation and why this is important to you. I know that in my state, if a Group Insurance Company who covers employees with no riders attached takes over from another Group Insurance Company without a lapse in coverage, they must take every employee as is, with no respect to pre-existing conditions. If the employer knew that there would be a rider attached to any coverage pertaining specifically to your case, then the employer can be held responsible for the cost of any medical treatment. Of course, laws are different in different states. You need to find out what these laws are in your state.
First contact your Insurance Commissioner and have him go to bat for you. As you stated, this was not your choice and you did not decide what coverage the employer was willing to pay for. He should have known that already covered employees should be transferred to the new company without rider or restrictions. Good luck and my prayers are with you, Carol. email@example.com
Jamie's November 28 reply to Tracey C's November 24, 2000 - Hi Tracey, Lidocaine was what they kept pumping into me to get my heart rate down. I was in V-tach, bigeminy, 220 bpm. Before I was released, I had to have a wisdom tooth removed. They used novacaine and happy gas. I called my cardiologist first, though. Maybe you should call the cardio nurse and ask. It never hurts to be sure. Good luck, Jamie. firstname.lastname@example.org
Jon's note: Lidocaine (Xylocaine) is a Class 1B anti-arrhythmic drug, for ventricular arrhythmias
Jeanette's November 28 reply to Tracey C's November 24, 2000 - Dear Tracey, I have been to the dentist a lot in the past few months and it is a fact that Lidocaine will do more harm than Novacaine. My dentist won't give me anything but Novacaine; lidocaine will cause pain when injected but novocaine does not. Lidocaine is mostly used for stitching up lacerations on extremities and face, but not used for dental procedures. Mike is right, lidocaine raises BP where novocaine shows only a slight rise. Cardiologists prefer to have dentists use Novacaine. At least mine does. Good luck, Jeanette. email@example.com
Jeanette's November 28 reply to John Len's November 27, 2000 - Hi John, Thank you for the info. I have been to the site and chatted a little with other people in my situation. I really appreciate the help you have given me. I go in for pre-testing soon and hopefully they will have an answer for me about getting in before February. Take care and have a great Christmas if I don't talk to ya before then! Jeanette. firstname.lastname@example.org
Victoria F, November 28, 2000 - Hi everyone, Please keep Phyllis in your prayers since the loss of her dear mother. It's even rougher not being well yourself and grieving for a mother you loved dearly! I know because my mother died in February and this board was my lifeline and reached out to me with tremendous love! Thanks guys, for the support.
My echo was done recently and the doc said it isn't going to get any better. My EF stopped 9 years ago at 30% and hasn't budged, but the meds keep me going and I am thankful for them. Plus, I even shock myself at what I can accomplish in the course of a day; so the Lord is good! Thanks Jon, for being here for all of us!
Phyllis' e-mail address is Phyllis1936@webtv.net. Love and prayers, Vicki. BootsIM@aol.com
Carol M, November 28, 2000 - Hi Jon, I just thought you might like to know my doctor's reaction to my asking him the questions I had discussed in my first post back in October. While I was in the hospital with the MI I just had, I asked him about my LBBB and why it comes and goes. I told him that everything I could get my hands on to read about this condition said that it did not come and go. I mentioned that I had gone on the Internet to find more information about other problems like CM, CHF and Coreg, He actually asked if I was trying to get a medical degree off the Internet. I told him of course not but that I needed answers. I further stated that previously I didn't know enough about the subjects to know what questions to ask. He told me to just stay off the Internet and try to relax. Of course he was very nice about it but it still made me feel like a fool.
I told him that I didn't want to look stupid when I ask dumb questions and have someone look at me as if I should be locked up. He just laughed and said don't worry about it. Of course I am not going to follow his instructions on this matter, as you can plainly see because here I am. I just want to be informed. Is that so wrong? Does it really threaten doctors to have people ask them intelligent questions? I just thought you would get a laugh out of that one. email@example.com
Jon's November 28 reply to Carol M's November 28, 2000 - One of several reasons I am changing doctors - and a reason I am having trouble finding one - is that I now insist on a doctor who understamds the scope of info on the web. I don't care if they like it or use it but I will no longer tolerate doctors who think the web is just for games, or has nothing valuable at all to offer. They are seriously behind the time and the fact that Cleveland Clinic hands out printed copies of The Manual sort of backs up the value of online info. ;-)
And yes, it really does threaten some doctors that much. However, this is only the case with doctors I do not want treating me. <g> Jon.
Brandy's November 28 reply to Ron P's November 27, 2000 - Hi Ron, Welcome to the board. I just found this place not long ago myself. The abbreviations will fall into place for you like a second language soon enough. ;-) I hope you're feeling ok. Take care. Brandylee1114@aol.com
Brandy, November 29, 2000 - Hi, I always have chest pain, off and on and off and on. I was just wondering if anyone has felt it in their back? Like right between the shoulder blades, wrapping around to the left side under the arm? firstname.lastname@example.org
Jim L, November 29, 2000 - Hi Jon, I read with interest how you got this web site started. I had to laugh when it became obvious that your spiritual leader wanted you to do this. I guess He figured there were just too many people blowing His horn (like sounding brass) and He picked you to really do something to help your fellow man. May you be rewarded (either here or there). Thanks for everything, especially how you help people! Jim L. email@example.com
Gaynell, November 29, 2000 - Hi Jon and everyone, I was diagnosed with DCM and diabetes in August of this year. I am on a ton of meds, which seem to be working really well. I had an EF of 20% when diagnosed and really felt bad. Now I feel better than I have in awhile. My doctor seems to think that the cause of my problem was viral, and that with the meds and rest and some time I will eventaully be okay. My question is how often should I have an echo to monitor my condition? Thanks, Gaynell. firstname.lastname@example.org
Jon's November 29 reply to Gaynell's November 29, 2000 - Hi Gaynell, I get this question a lot in e-mails. It depends on several factors. If you are being treated by a CHF specialist (a cardiologist whose main practice population is CHFers), you will need an echo less often because he should be more observant and more sensitive to changes in your condition. If you have been stable for at least 6 months (rarely take extra diuretics, have little or no edema or other symptoms besides the ever-present fatigue) you will need an echo less often. On the other hand, if you are in a trial or have edema and other symptoms off and on, you will need more frequent echos.
The big reason to have an echo is a definite change in your condition: if you suddenly or over a short period of time become much more tired, more short of breath, lose more sleep, cough a lot, or swell. This may indicate lowered cardiac output, which should be quickly checked by echo.
My personal opinion is that if you are quite stable, having an echo once every 1 - 1½ years is enough, provided your condition remains stable during that period. If you are having meds changed a lot or are not stable, I would want an echo every 6 months. I hope that helps. Just rmember that I am not a doctor! Jon.
Jan G, November 29, 2000 - Hi, I am a first time participant. In February, I had an AV Node Ablation and since that time I have been breathless. I have been diagnosed with CHF. My EF is 60% and I'm just reading to find out all I can about this condition. Thanks for the info thus far and I'll keep checking in to see what I can see. Happy holidays to all! email@example.com
John Len's November 29 reply to Scott's November 28, 2000 - Hi Scott, I guess I was lucky in that I quit smoking about 20 years ago. I was diagnosed with diabetes late into it but started on insulin to bring it under control. I had angina for some years so when the big one came I knew exactly what it was and tried to get help immediately. In spite of the keystone cops type of emergency service I got, I survived; I think. ;-) firstname.lastname@example.org
Wayne S, November 29, 2000 - Hi Everyone, Well I really overdid it. My water heater in my house went out on Sunday. I decided to replace it myself - dumb! The next day I went out of town with my wife and did not return until the next day. I slept 14 hours. When I woke up I was exhausted and just could not function. I had taken my meds and just could not function. I took my blood pressure and it was going crazy from a 105/69 to about 85/58. I immediately called the doctor and went to see her. By the time I got there I was feeling somewhat better. They took an EKG and said it was about the same as the last one. She gave me another pill to take: Accupril, which is another ACE inhibitor. I already take Lotensin. Is it unusual to take 2 ACE inhibitors? I did not know what Accupril was at the time. She said it would make my heart beat stronger. God bess everyone, Wayne S, CM & CHF. email@example.com
Autumn's November 29 reply to Carol's November 28, 2000 - Hi, To Tracey, I've used Lidocaine with no adverse side effects. I liked that it was shorter acting.
To Carol, I think if I listened to the doctors about staying off the web, I'd have a very short life, especially since they have said I am at the end of the road as far as treatment is concerned due to my allergies and bradycardia. I am not willing to just give up and I think the web can be a great asset. According to many studies, a great number of heart failure patients are not treated aggressively (at optimal levels). Some studies suggest that blacks, women in general, and the mentally ill are not always given the best treatment. We need to be our own best advocate. I do get discouraged trying to find a good cardiologist here in North Dakota who will competently and aggressively treat my case, not keep medical information from me, and not insist I stay off the web.
I asked my dentist about losing teeth with heart failure. He told me that only some heart failure patients lose teeth, that a percentage of the population carries a specific bacteria in their mouth (that is normally kept in check) but when a person gets heart failure or has problems with immunity, those bacteria are no longer kept in check. He says if you don't have that bacteria, you won't have tooth loss. I did develop some peridontal problems several years ago when I was on the anti-depressant Zoloft, but it cleared up when I went on a different anti-depressant. Thank you all for being here. AmberDawn-Blzn@webtv.net
Jon, November 29, 2000 - Hi everyone, I'll jump in briefly on the tooth loss/gum disease thread. Please remember that as mentioned in The Manual, lack of normal amounts of saliva due to weak blood flow and diuretic use prevent the body from washing bacteria and food particles out of our mouths as in healthy people, especially while we sleep. This alone can cause serious gum problems and tooth loss.
Gum disease does not necessarily mean that you don't care for your teeth. Obviously poor dental hygeine is one cause but it is by no means the only cause of serious gum and tooth decay and disease. Some research shows that gum disease may be partly caused by hormonal and other changes that occur during the course of heart disease progression. It isn't clear what the relationship is exactly yet, but it is being researched. Jon.
Bill D's November 29 reply to Wayne S' November 29, 2000 - Hi Wayne, I can't think of anybody who was taking 2 ACE inhibitors at the same time. I think you should call her and remind her about the Lotensin. Correct me Jon, if I'm wrong about this! Bill D. firstname.lastname@example.org
Jon's note: Nope, some docs try an ACE inhibitor and an ACE II inhibitor (ARB) together but I've never heard of 2 ACE inhibitors either
Taavi K's November 30 reply to Brandy's November 29, 2000 - Hi Brandy, My "chest pains" were frequently in my back. They were right between my shoulder blades but felt different from a regular backache. They felt deeper, like the source was inside, rather then on the surface. For a long time it did not occur to me that these back pains were related to my chest pains. Then one day I tried a nitro and - Presto! - it worked, the back pain went away. Taavi. email@example.com
Davida's November 30 reply to Terri's November 23, 2000 - Hi Terri, Could some of your meds in combination or singly be causing some of the fatigue? My husband Dan was taken off Coreg but he still is on an Ace inhibitor and that dreadful amidarone. Dan went from 10% EF to 40% EF. He says, and I can see, his energy level has picked up. It's been 3 months since he came off Coreg. So far so good. Meds are known to contribute to the blahs, which don't help if your condition also adds to the blahs, but our doctor says everybody is different. He has patients with lower EFs then Dan that work longer and further than Dan. firstname.lastname@example.org
Ginger's November 30 reply to Ron's November 27, 2000 - Hi Ron, Go to the Me Too! page and at the bottom is a list of a lot of the abbreviations we use here. It should be a big help to you! Stay well, ya'll. Hugs and prayers, Ginger. email@example.com
Cindy's November 30 reply to Wendi's November 24, 2000 - Hi Wendi, Actually, my ENT told me that the sinus problems (positional fluid movement) were part of CHF. He said that when we recline, the tissues can't absorb the fluid fast enough, the nasal passages become swollen, then the passages close off. Then when we get up or sit up, the passages will open up. He explained that it was just like edema in the feet or legs but reclining makes it pool in the head. He also said that it was "cyclic." firstname.lastname@example.org
Anna's November 30 reply to Brandy's November 29, 2000 - Hi Brandy, In reply to your question asking if anyone else feels chest pain in their back: Whenever I get really fatigued, I get an intense pain right between my shoulder blades and all the way through to my chest. It sounds similar to what you experience. email@example.com
Jill M, November 30, 2000 - Hi Jon and all, Today my only sister (and only sibling) was diagnosed with heart failure. I am in total shock. There goes my "idiopathic" diagnosis. She is exactly the same age I was when I got sick. She is thin like me, doesn't smoke either so it's not lifestyle related. No one else in the family, as far as we know, had it. At least I know all is not doom and gloom and with good treatment she can remain relatively free of symptoms as I am.
Our mother is 88, and we always said she'd outlive both of us. Like me, Audrey was diagnosed with asthma, but she is asthmatic and she and her doctor attributed her worsening SOB and swelling of her legs to the steroids she was taking. I believed that lightning couldn't strike twice, and only jokingly said to her - she lives a long way away, so it was on the phone - that her symptoms were exactly like mine. She is now in the hospital on intravenous Lasix, and will undergo all the usual tests within in the next few days.
There has been so much death and illness in our family over the last year. Won't someone please tell me this is a nightmare? I'm not serious, but since my husband died a year ago we speak to each other every day. I am devastated. I post infrequently but it's great to know you are all there for me when I need you. I am one the very early "Jon's Placers" and read the posts almost every day. 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.