Barb L S' 9-16 reply to Paula's 8-19 hoping to help
Barb L S 9-16 lost SSD, to Kat & more
Jim T's 9-16 reply to Anthony's 9-14 Coreg and depression
Meyer Zaremba 9-16 am I in a danger zone?
Jon's 9-16 reply to Brenda H's 9-15 Oops!
Paul M C 9-16 seek disability lawyer in Minnesota & more
Tracey 9-16 thanks, drug info request, does anyone else experience this?
Barb L S' 9-16 reply to Phyllis A's 9-15 I will pray for you and your uncle
Ruthie A 9-16 has anyone else experienced this?
Doug K's 9-16 reply to Jon's 9-15 metric system help
Tom B's 9-16 reply to Patti D's 9-15 Coreg dose & EF, energy levels & more
Ophelia's 9-16 reply to Patti D's 9-15 tests results, coping & more
Claire's 9-16 reply to Jon's 9-15 those brain mush days
John's 9-16 reply to Donna's 9-15 hams
Jack 9-16 closet conspiracies
Barb L S' 9-17 reply to Ruthie A's 9-16 BP drop experience
Jon 9-17 I am somewhat incommunicado
Bill D's 9-17 reply to Meyer Zaremba's 9-16 CHF info
Karen 9-17 seek CHF doc info & more
Jon's 9-17 reply to Karen's 9-17 some notes
Gus R's 9-17 reply to Tracey's 9-16 antidepressants
Tom B 9-17 more water helped me
Davida's 9-17 reply to Patti's 9-15 coping with CHF, meds, transplant list & more
Kathy's 9-17 reply to Patti's 9-15 transplant option
Phyllis A 9-17 SSD review upcoming - questions
Jon's 9-17 reply to Phyllis A's 9-17 I hope others give their experiences
Shirley V's 9-17 reply to Jack's 9-16 I loved the hanger story
Ben B 9-18 don't wander off because you feel better!
Kat 9-18 questions - isosorbide, sleep duration
Cheryl G 9-18 update, water, Coreg dose
Cheryl G's 9-18 reply to Beverly C's 9-7 Coreg dose & blood pressure
Donna Z's 9-18 reply to Jack's 9-16 loved the hanger story
Ben B's 9-18 reply to Phyllis A's 9-16 SSA doctors
Renee's 9-19 reply to Patti D's 9-15 heart transplant experience
Phyllis A's 9-19 reply to Ben B's 9-18 many ways to keep in touch
Jon 9-19 update
Bill Ds 9-19 reply to Ben B's 9-18 still around, still kickin'!
Jan S 9-19 does anyone feel this way at times?
Barb L S 9-19 corrections to my last post
Ruthie A 9-19 update, beta-blocker changes & more
Mary Lou L's 9-19 reply to Kat's 9-18 isosorbide, sleepiness
Bob Cromwell 9-19 seek CHF doctor in Ocean county, New Jersey
Jill M's 9-191 reply to Jack's 9-16 about those wire hangers,...
Leland Y 9-19 strange heart irregularities
Leland Y's 9-19 reply to Dana W's 9-15 fibromyalgia and prednisone experience
Felix O's 9-20 reply to Phyllis A's 9-17 SSD reviews
Laura F 9-20 does anyone else have gum problems?
Kat's 9-20 reply to Jan S' 9-19 avoiding viruses, coping, attitude
Ken S 9-20 intro, having heart transplant evaluation today
Ernest D's 9-20 reply to Phyllis A's 9-17 I am being reviewed by SSA
Margie F 9-20 I got a heart!
Jon P's 9-20 reply to Jill M's 9-19 about those coat hangers
Claire E's 9-20 reply to Laura F's 9-20 teeth and gum problems & more
Bill D's 9-21 reply to Jack's 9-16 do you have another e-mail address?
Kat H's 9-21 reply to Ken S' 9-20 will pray for you, Coreg dose questions
Jon's 9-21 reply to Kat H's 9-21 Coreg dose
Jeanette's 9-21 reply to Tracey's 9-16 pain, Zestril, drug interactions, talk to your doc
Jeanette's 9-21 reply to Laura's 9-20 tooth and gum problems, healing time & more
Mike 9-21 end-stage CHF question
Jon's 9-21 reply to Mike's 9-21 end-stage CHF
Tom E 9-21 Atkins diet and CHFers
Michael M 9-21 is this end-stage CHF coming?
Joy R 9-21 SSD review experience
John A 9-21 seek CHF doc in Atlanta
Phyllis A's 9-21 reply to Felix O's 9-20 SSD review
Phyllis A's 9-21 reply to Ernest's 9-20 SSD review
Bill D's 9-21 reply to Tom E's 9-21 grapefruit juice, Coreg adjustment & more
Ken's 9-21 reply to Kat H's 9-21 Coreg experience & more
Tracey C 9-21 seek CHF doc in Orange County, also transplant question
Kat H 9-21 SSD application advice
Claire's 9-23 reply to Jeanette's 9-21 slow healing & more
Tom E's 9-23 reply to Bill D's 9-21 Atkins diet
Laurie A 9-23 seek those with heart-lung transplant
Joe S' 9-23 reply to Tom E's 9-21 the Atkins' diet & more
Greg 9-23 Medicare questions
John Len's 9-25 reply to Greg's 9-23 Medicare service and coverage
Kat H's 9-25 reply to Laura's 9-23 heart/lung transplants
Bill D's 9-25 reply to Greg's 9-23 Medicare coverage
Gus R's 9-25 reply to Greg's 9-23 Medicare coverage
Kevin 9-25 My CHF experience
Jon 9-25 moving, e-mail and more
Robin B 9-25 post-pregnancy CHF, questions
Jeanette's 9-26 reply to Claire's 9-23 slow healing with CHF
Yvette W's 9-26 reply to Robin B's 9-25 peripartum cardiomyopathy
Tonya Dean's 9-26 reply to Robin B's 9-25 peripartum cardiomyopathy
Felix O 9-26 questions about chest burning & stress
Marilyn Cook 9-26 second time around
Patti D 9-26 how do I stop smoking & more
Karen R's 9-26 reply to Robin R's 9-25 CHF with young children & more
Mike J 9-27 good news update & more
Jon's 9-27 reply to Mike J's 9-27 that really is great news & more
Jon 9-27 moving
John Len's 9-27 reply to Greg's 9-23 Medicare tips
Laurie A 9-27 update, upcoming right heart cath
Jon 9-30 update
Tonya Dean 9-30 flu shot questions
John Len's 9-30 reply to Patti D's 9-26 kicking the habit
Ben B 9-30 new trial underway
Jon's 9-30 reply to Ben B's 9-30 new trial is interesting & more
Tracey C 9-30 heart size, Aldactone, doctors, questions
Jon's 9-30 reply to Tracey C's 9-30 heart size, Aldactone, doctors & more
Mary H 9-30 new doc, new approach, update
Bill D's 9-30 reply to Tonya Dean's 9-30 flu shots and CHF
Rick M's 9-30 reply to Patti D's 9-26 kicking the habit
Barb L S' September 16 reply to Paula's August 18, 2000 - Hi Paula, I have been searching for your previous posts. I am really concerned. I don't think that Anthony needs a transplant yet either. I'm not a doctor, however getting a second, third, fourth or however many opinions you want is your right. Hopefully, when I call my doctor, I'll hear from you. You are Anthony's mom and the doctor will need to speak with you about Anythony's history. Hopefully, since my doc is the transplant director, he can get Anthony into the pediatric wing. I hope he will do this since Anthony is only 2½ and deserves that 2nd opinion.
I know all this is scary but I am here for you. My family is here for you and Anthony. Just because one doctor at Columbia has said something does not make it truth. There are other doctors and other hospitals. I went to Columbia and I understand how hard it is to let go of a CHF doctor there or anywhere because we look to them to literally save our lives. It must be a thousand times harder for you as Anthony's mother. Just going through the stuff with Ali is hard and he has not been diagnosed with anything. No one knows if or when he will have a heart problem. The testing alone is hard enough. It tells us that we're here for a reason.
Please call me; I don't want to give my doctor any info that is not correct. Ali and I love you and even though it's scary now, it doesn't have to be for long. Ali sends a kiss and hug right to Atony and his mommy, Barb. Alikeys@hotmail.com
Barb L S, September 16, 2000 - Hi everybody, I've missed coming here but there have been a lot of things going on. I lost my SSD, after receiving it for only 2-3 months, for no reason. My attorney is checking into it. It has nothing at all to do with my doctor or my diagnosis but I now have no coverage. That can be devastating just in the cost of medications alone. I also went back to New York for another biopsy concerning "Barrett's Esophagus," because they had found precancerous lesions. I still don't quite understand it because I had always thought that Barrett's was a precancerous condition itself. So now I'm waiting for test results. Honestly, right now I'm more concerned about non-coverage. We need that. I've been here reading a lot about SSD and their requirements. I fit all of them. Please keep us in your prayers.
Hello Kat! Your attitude is astounding, really. It's truly an inspiration and I just may adopt that motto! I got sick after not being sick for 36 years and have met people who have been sick for a long time, such as yourself. I don't feel it's harder anymore. I used to but now I feel it's just an illness that's hard for everyone, including family members. Everyone take care, Barb. Alikeys@hotmail.com
Jim T's September 16 reply to Anthony's September 14, 2000 - Hi Anthony,
I have depression problems also. I was up to 25mg twice a day on Coreg and I was really fogged up. I reduced (slowly) to 12.5mg twice a day and things improved a lot! It didn't go away but became better to handle. I felt better at 25mg twice a day but I just couldn't handle it. Of course this was with the doctor's permission. I prayed and thought about this for quite awhile before I did it but I am glad I did. I don't feel as good but my mind is clearer.
About this time my 2 great-grandkids came to visit and I had a great time with them! I am more tired but am able to do much better! I hope this helps, but be sure to check with your doctor first. God bless you, Jim T. email@example.com
Meyer Zaremba, September 16, 2000 - Hi, I have had 2 heart bypass operations. After the first one I was told that my EF was 55%. After the second one I was told that my EF was 28%. Am I in the "danger zone?" Can anything be done to improve my EF? GreenehCuzineh@aol.com
Jon's September 16 reply to Brenda H's September 16, 2000 - Hey Brenda, As has been (quite kindly) pointed out to me, my understanding of the metric system is - shall we say - less than perfect. Being a good ol' American cabinetmaker, if it ain't in feet, inches or fractions, it ain't right! I redid my calculation in proper American style and discovered that your heart is roughly 4 feet 2 1/2 inches high, 2 feet 3 1/4 inches wide and weighs about 44 pounds. Now, I'm no doctor but I'd say you have a real problem there, young lady! <lol> Seriously, what can you expect from me?!
My daughter informs me that 6.1cm = 61mm. (I changed my earlier post to eliminate a never-ending stream of future e-mails) Also, I still have no e-mail but have stirred up everybody concerned to try and get it fixed. I also set up a page through which I can be contacted. Just click on any "e-mail link" to Jon on my pages and it'll take you to that page now. I'll get it that way. Jon.
Paul M C, September 16, 2000 - Hi, I've been a lurker here for 2 years or so. I developed CHF after my second heart attack in August, 1998. I'm having a terrible time with a private disability insurance company who has now rejected my claim for long term disability after approving it twice for their short-term coverage. Does anybody know of a good attorney in Minnesota who specializes in disability cases? And thanks to all, this forum has been a godsend. firstname.lastname@example.org
Tracey, September 16, 2000 - Hi everyone, First thanks again for all the kind words after my first post. I had my first really bad day since my diagnosis today and have a couple questions that my doctor can't seem to answer. When I have a bad day I get stabbing pains on the side of my neck and my throat feels swollen. Does this happen to anyone? The only thing I did different last night was up my Zestril from 5 to 10mg. I don't know if that had anything to do with today, but if anything similar has happened to you, please let me know. Finally, I believe that an anti-depressant might be on the horizon for me and I could use a recommendation. Thanks! email@example.com
Barb L S' September 16 reply to Phyllis A's September 15, 2000 - Hello Phyllis, I just wanted to say that your uncle will be in my prayers. God is watching over him and taking care of him. I also believe that God is taking care of you and your family. Take care and God bless, Barb. Alikeys@hotmail.com
Ruthie A, September 16, 2000 - Hi to all, especially the newbies, I had an interesting experience the last 2 days. Since I have high blood pressure and suffer from diastolic heart failure, I am constantly struggling to keep my BP and heart rate down. I take the maximum dose of atenolol (100mg per day) and a moderately large dose of Imdur (120mg per day), among the other usual medications. Anyway, yesterday at work I started feeling lightheaded and just not quite right. I had a couple of fleeting chest pains and a very brief episode of chest pressure. I chalked it all up to being tired and took it easy as best as I could the rest of the day. By the time I got home I was feeling fine.
Today, I was a bit lightheaded again during my physical therapy in the pool, but it went away quickly. However, I asked my hubby to take my pulse when I got out of the water. It was only 48. By the time I got home it was 44 and my BP was very low too. I went to my cardiologist and got an EKG to make sure there was no heart block and would you believe my heart rate was up to 63! Murphy's Law at work again! <g> But when I got up from the table, I nearly passed out. My heart rate had gone down to 58 and my BP was in the toilet somewhere. I could not go to work today and I am allowed to work only half days the next 2 days. I also have to stop my atenolol for the weekend and my Imdur for tonight.
However, as of tonight all my readings are back up within normal range and I am feeling tired, but fine. Has anyone out there experienced the same thing? Any ideas on the cause that I could discuss with my doctor? He is as puzzled as I am, considering my history. Ruthie A. firstname.lastname@example.org
Doug K's September 16 reply to Jon's September 15, 2000 - Right on Jon, about the millimeters. In case anyone would want to, there is a conversion chart in Microsoft Works under Taskwizards called Conversion table linear that converts from centimeters up to miles and kilometers. Most people's computers come with that program, I think. email@example.com
Tom B's September 16 reply to Patti D's September 15, 2000 - Yo Patty I gotta tell you about my results. I was also on what seems to be (from reading this site) a pretty low dose of Coreg at 3.125mg twice a day. From echos done in April and another done in July, my EF (19%) had not improved and I had had a pacemaker installed as well, in May. I was also referred to a heart transplant clinic. Then bingo! In August, with a third echo, my EF was at 40% and over the next few weeks my energy came partly back as well. My cardiologist thought most of the increase was due to the pacemaker but I also think that perhaps the lower dose of Coreg simply took longer to help. Anyway, I'm off the heart transplant list and adjusting to a slower quality of life but one that seems manageable. Time was on my side, and I hope it is for you as well. Tom. firstname.lastname@example.org
Ophelia's September 16 reply to Patti D's September 15, 2000 - Hi Patti, When I was diagnosed 6 months ago, I was at 10% and was put on Lanoxin, Prinivil, furosemide, Coumadin and Coreg at 6.25mg twice a day. I lost 8 lbs in 2 days. At my 6 month checkup and heart catheterization, I was at 27%, and my Coreg dose was reduced to 3.125mg because of a-fib. I feel basically the same except I have no SOB lying down, just am uncomfortable during the heat and when doing moderate work. My next appointment is in 2 weeks so hopefully I'll have a better EF to report. Try not to stress yourself out over the details and statistics given to you. Stay informed, but take it in stride. Ophelia. email@example.com
Claire's September 16 reply to Jon's September 15, 2000 - Hi Jon, I just wanted to tell you that I am having a "blah" and "brainless wonder" day today and your post to Brenda cracked me up and gave me a lift. Thank goodness we can all relate to the brain mush! Love and peace, Claire. firstname.lastname@example.org
John's September 16 reply to Donna's September 15, 2000 - Hi Donna, I will try to be diplomatic about this. <g> What Rick was trying to say was not eating ham, but that he is a ham. Back in the good old day of vaudeville, you could have put Rick on a stage and he would have cranked out one-liners all day long. ;-) John. email@example.com
Jack, September 16, 2000 - Have you looked in your closet lately? Noticed anything different? Something missing? Maybe you haven't noticed because it has been an incremental intrusion. Sure you still reach in and get your shirts or pants and put them on as usual and go about your business without a thought as to what has happened and has been happening for several years.
See, unbeknownst to most of us, the hardware industry has seen fit to make us part with much more of our hard-earned money by depriving us of one of our most important universal tools and repair items. For years we swore that they were the inanimate cousins of rabbits, that they bred and multiplied in the dark until there were just so many of them we didn't know what to do. But they must have all died out and we didn't notice.
No, we didn't notice until we were out working on the car and we realized that the bracket on the muffler wasn't attached anymore. So we went to the closet, reached in and grabbed this thick, pink plastic thing. Nope, this won't do. So we sort through all the clothes hanging on the pole and we find - pink plastic, blue plastic, green plastic, a couple of old wooden hangers, but no wire hangers. So we rummage around on the floor to no avail. Then we go check all the other closets. Nothing!
Getting frustrated, we even climb into the attic and dig through all the old dusty boxes stirring up our allergies and stumble coughing and sneezing down the stairs, empty handed! A frantic search through everything in the garage and basement yields nothing but an oil stained Playboy from 1973 with the centerfold missing. Where are the wire coat-hangers?
You go next door to the neighbor's and together you search his house from top to bottom and there's not a wire hanger to be found. Grumbling and frustrated, you return to your car and ponder just how you are going to keep the muffler from rattling without a coat hanger and finally decide the only option left to you is to buy a new bracket from the auto parts store or a roll of wire from the hardware store. But remember - every time you buy a roll of wire so you can do a normal job that a wire coat hanger was made for, you use the wire once and then the roll disappears. That settles it. There's no alternative.
So you put on your coat and get ready to head for the auto parts store. You try to open the car door and see your keys dangling from the ignition. Now where did I put that coat-hanger? Beware, guys! The duct tape is going to be next. firstname.lastname@example.org
Barb L S' September 17 reply to Ruthie A's September 16, 2000 - Hi Ruthie, I also have high blood pressure and am constantly attempting to keep it down. After being admitted into Mt. Sinai for edema and CHF, my doctor ordered some basic tests. After being given an IV drug called milrinone plus other meds, I was going to have an echo. My IV was leaking so they had to pull it. Two nurses came into that tiny little echo room and were attempting to get another IV started because my doctor did not want me off that medicine. It never happened because my BP dropped to 51/29. They had to insert a central line, take me to CCU and my doctor still does not know what happened.
They increased my Lasix and did other things. I didn't even know what happened until they told me. After going through this, I would suggest to everyone to really find out the answer from your doctor. What happened to me happened in the hospital but I was under his care. My BP has dropped at home like this but not as bad as that time. It was usually due to dehydration, which can come from any number of things. Please get checked out as soon as you can. Alikeys@hotmail.com
Jon's note: Milrinone and other inotropes cause vasodilation, thus sometimes extreme BP drops. It is one of their 2 primary side effects
Jon, September 17, 2000 - Hi everyone, I am sorry but no one will be getting any answers to their e-mails to me. Either Prodigy or my web host, or both, have a serious problem and everyone is pointing their finger at everyone else, so I am basically screwed. I have no POP mail, no SMTP mail, and very little HTTP ability right now. Due to a timing problem with the expiration on my credit card, I cannot change ISPs right now either. This is a week old problem already so I may as well get used to it. So it goes,.... Hey, if I can run a web site with almost no Internet connection, I can do anything, right?! <g> Jon.
Bill D's September 17 reply to Meyer Zaremba's September 16, 2000 - Hi Meyer, Welcome to Jon's Place. We're glad to have you aboard our leaky old boat. <g> The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Go to the Site Index first. You might start your education by reading The Manual. Some of us print it out for folks who don't understand. You'll be able to find answers to all your questions including what you need to ask your doctors. Bill D. email@example.com
Karen, September 17, 2000 - Hi, Here's my story: In July, after 2 months, my internist finally referred me to a cardiologist for fatigue, edema (all over except ankles) and SOB. The cardiologist did a stress echo and found cardiomyopathy and CHF, an EF of 25-30%, which worsened with exercise; also mitral and tricuspid valve regurgitation. I went on TriamT HCTZ and lisinopril and I felt much improved in a week. This was in early August.
A couple of weeks ago, I started feeling worse again with edema in my ankles, fatigue on walking normal distances, and some SOB, although not as bad as before. I had a repeat regular echo and she was surprised I'm not feeling well. Apparently, I'm cured. My EF is 50, my heart is working well except for septum, no valve leaks. I didn't cut back on activity then start up again. I don't have a car, so walking is a way of life but suddenly it became more difficult about 2 weeks ago. I am sleeping 12-14 hours a night when I can and still dragging around. Going anywhere is exhausting.
There's some stuff on this site about "numbers better feeling worse" and I'm reading about that but I need some real medical info. I can't go to her with non-medical web site info. She's telling me I need to push myself more, but every day is a push. Any suggestions? She did put me on Lasix instead of another diuretic. I haven't noticed a difference but it hasn't been that long. They always warn me to take them in the morning because I'll be up all night but I have yet to take one that really makes me pee.
Also, I need to find a CHF specialist. She's a cardiologist and I would like a second opinion. Your list doesn't give one. How can I find one? I have searched the web with no luck at all. Suggestions? Thanks! firstname.lastname@example.org
Jon's September 17 reply to Karen's September 17, 2000 - Hi Karen, If Lasix does not increase your urine output significantly, you might want to have your kidney function checked if you still have edema; if you don't have edema, I wonder if you need Lasix. It should really make you go, urgently, if you need it and if it is doing its job.
As noted at the beginning of each such article, part of the "good numbers, feel bad" info was written specifically for this site by Luigi Tarantini, a member of ANMCO and head of an Italian hospital's CHF clinic. My own CHF specialist - published (IMPRESS) CHF specialist and a Director of Cardiac Transplantation at my transplant center - agrees with Gino about the problem - at least partly - being an as yet unidentified muscle/energy use problem caused by ventricular dysfunction and the body's reaction to same. More CHF specialists are quickly coming around to this view as Coreg raises our numbers but not always our ability to function. There are articles scattered around my pages dealing with the issue of functional ability (all published in medical journals, checkable through Medline, as are all my "data" articles) but I have no reliable Internet connection right now so you'll have to look for them.
I'm not sure what to tell you about finding a specialist. I put all my suggestions about finding such a doctor on one page here. If you followed all those suggestions and still did not find a single specialist, I am at a loss. Finally, be sure to have your valve function rechecked at your second opinion and get a thorough physical in the meantime to be sure another health problem is not contributing to your fatigue. Sorry I can't be more help. Jon.
Gus R's September 17 reply to Tracey's September 16, 2000 - Hi Tracey, Finding the right antidepressant was a trial and error process for me. Head meds are like many others: what works well for me could be worthless to you. Prozac and something else did me no good and I think the Prozac made things worse. I'm now taking Paxil, with Xanax added occasionally to help smooth the rough spots. This has helped, but like most meds, it helps me live with the problems; it doesn't eliminate them.
I would suggest you talk to your dox about antidepressants. They may help you have a better life as a CHFer. If you look through the bios, you will see that antidepressants are often included in the med lists. My dox decided this was the PCP's area of concern so he oversees them but the heart doc wants to know of any changes. If you do try antidepressants, I think you will find it takes 3 to 4 weeks before you see any benefit from them. Even then, they are not like Xanax, but my dox ration my Xanax supply. With me there were no noticeable changes after starting Paxil. I was to return to the doc after taking it for a month. At about 3 weeks I thought we would probably have to try a different one. A week or so later when I did go in, there had been a change; nothing big but my world was running a little smoother, and all of us deserve a little smoother once in a while. ;-) Best wishes, Gus R. email@example.com
Tom B, September 17, 2000 - Hi, I've had a pretty significant improvement in my quality
of life with a very simple change - more water. Since I posted last about this I've had a "down and up" experience that seems to verify it for me. My primary cardiologist stuck me on the 2 liters a day flight plan back in April when I was first diagnosed with an EF of 19%. I stayed there until being referred to the University of Washington heart transplant clinic. When they ran the normal evaluation tests, they discovered my numbers had improved significantly since I'd had my last echo, with my EF now 40%. They also discovered I was
dehydrated. So the head of the clinic said it was ok and in fact, needed, that I drink 3 liters of fluid a day. So I started doing that.
Very shortly after that my heavy-duty dizziness all but vanished and a week or so later I began to notice an improvement in energy levels; not great of course, I can still hit the wall but we'll all take anything, right? Then I saw my primary cardiologist a month later. She had been informed by the other doctor of my fluid increase and had no objection. In fact, she said I could simply drink when I was thirsty, meaning of course my body would take care of itself. So that's what I did. Oddly enough, "being thirsty" meant wanting to drink about 2 liters of fluid again. Then about 3 to 4 days into the 2 liters again I hit the wall, worse than simply doing so by overexercise, major bad feeling.
So I went back to drinking the 3 liters again and bingo, back to feeling better. That tells me that for me anyway, 3 liters is where I need to be and the improvement in day to day levels of energy are noteworthy. Now this is classic anecdotal evidence but maybe it will be of help to someone else. I hope so. firstname.lastname@example.org
Davida's September 17 reply to Patti D's September 15, 2000 - Hi Patti, My husband was in the same boat. He had a low EF of 10% in February but it is now between 35-40%. We like to quote the higher end figure. <g> Go ahead and get listed, and keep praying and following your doctor's advice. Work on finding mental strength from any and every source. This site is one of the best places for support. My husband didn't want to be listed either. It is a very frighting "in your face" experience but it's a precaution and not a definite.
You are listed in the hopes of improving and being taken off the list, which can happen. My husband was up to 25mg of Coreg and recently had to be taken off it because of a-fib. They gave him amiodarone. The doctor has also offered him an anti-anxiety medicine for those rough times when Dan starts feeling on edge about everything. So far his spirits are up and he has not taken any of the anti-anxiety meds. It must be the football season that is lifting his spirits. It definitely takes his mind off his worries. Read the caregiver side also on occasion for additional insight. email@example.com
Kathy's September 17 reply to Patti D's September 15, 2000 - Hi Pattie, I just wanted to tell you that your post sounded like me 3 years ago. I was diagnosed in April of 1997 with IDCM with an EF of 10-13%. My EF hasn't changed since then and I'm on about the same drugs you are. In March of 2000 I was put on the transplant list after going through the transplant evaluation. So you can see that it took 3 years of diet changes, exercise and lots of meds to get to this point. It seems a little soon for them to be talking transplant. When you have a transplant, you are trading one disease for another. You will be on 30-40 pills per day including some potent anti-rejection ones just to keep you going. Don't get me wrong; I belive in transplantation but not too soon in the process. Please feel free to e-mail me and we can talk more about this, Kathy. firstname.lastname@example.org
Phyllis A, September 17, 2000 - Hello Jon and friends, I received a letter in the snail mail from SSD saying they are reviewing my case to see if I'm still eligible for my benefits. I have a appointment date to see their docs near end of the month. My question is, when you are stable because of taking the right meds and you're on proper diet, is this considered cured and able to work? When I take my meds later than usual, (very rarely) my heart starts to palpitate, I have fullness in my chest and some angina discomfort, shortness of breath - all the usual symptoms. In order for them to hear this, should I not take my meds that morning, until after the examination so they can hear this and know I'm still not able to work or what do you suggest, Jon, or anyone who has been through this. Please reply. Thanks for any help. email@example.com
Jon's September 17 reply to Phyllis A's September 17, 2000 - Hi Phyllis, I have not yet been through my review and I'm not looking forward to it either. I have never been examined by SSA's docs so I am hoping people who have will answer you. As to not taking meds, I can't tell you to do that. If anyone else wants to suggest that this is appropriate, I certainly won't say one way or the other - it's a tough question. However, please make such suggestions to Phyllis by e-mail. ;-) Jon.
Shirley V's September 17 reply to Jack's September 16, 2000 - Hi Jack, I loved your interesting story about the wire hangers. If you ever need any, just let me know and I will mail you some wire hangers. <g> firstname.lastname@example.org
Ben B, September 18, 2000 - Hi everyone, I am writing to encourage any old-timers who have improved and are now just lurking around, to post occasionally. The purpose of a support group is for people who are old-timers and have encouraging things to say to reassure panicky newcomers. Just because your EF goes up and you start feeling better is no reason to stop posting. I know some people drop off because they have gotten worse or died, but I believe many (actually, I believe most) people stop posting because they improve. email@example.com
Kat, September 18, 2000 - Hi, My doctor has been talking about infusions. He tried me on a drug called isosorbide in pill form after a "lab infusion" while giving me a cath at the same time. This was supposed to increase my EF. He said I would feel better. I did have more energy but also greater exhaustion, as if I were crashing which happened back in college, with classes all day, study all night, classes again, crash! Does anyone else have any experience with this drug? I am not taking it right now. He is thinking about having me start again on a lower dosage.
A second question is, am I the only person who tends to sleep for 10-12 hours minimum? A nap is always 3-4 hours. There is no such thing as a "day" for me. Since I have meds to take every 6 and every 8 hours, I have to set an alarm constantly, swallow something back and zonk again. It means meticulous preparation and I still swell up as soon as I am up and moving around. Sorry, I caught a virus and am cranky this weekend; my first one in years, Kat. firstname.lastname@example.org
Cheryl G, September 18, 2000 - Hi Jon and Everyone, I'm sorry I haven't written to let you know what my doctor said after my question August 21st about the small Coreg dose. I've been a little depressed lately. The health issues are depressing enough and my son left the 30th of August. He joined the Air Force. I have to say I've finally felt something that hurts worse than child birth - it's when they leave the nest. His leaving home hurt badly enough and I've shed a few tears every day since then. My husband also had to leave last week for training in California. He's in the Army. To say the least, emotionally it's been a little tough for me lately.
I'm not alone; my daughter is home with me. It has only been 5 months since my heart attack and I guess being home alone with my 15 year old daughter makes me a little nervous. With my husband being in the Army, we are far from any of our family and I worry about my daughter should I end up in the hospital. Just 6 months ago I didn't have that worry. How quickly things change. Okay, enough of my depressing self. Thanks for being here for me to let it out, though.
Now for what my doctor said and did. He left me at the 6.25mg twice a day dose of Coreg for an additional 3 weeks total of 5 weeks. I titrated up to 12.5mg twice a day last Wednesday. So far, so good. I have to drink more water regularly than I was drinking, though. I had no idea water could affect your blood pressure so much. I don't have a restriction on fluids but I guess I unknowingly put one on myself. My blood pressure has been running around 110/70 now that I'm hydrated. My doc said we'd take it slow and try to reach 25mg of Coreg twice a day. Then as you said Jon, the zestril has to be increased. I hope I have enough of a blood pressure left after that. He said my heart was slightly enlarged and I have a leaky valve which he said they will have to watch. Cheryl. Garciaa@prodigy.net
Cheryl G's September 18 reply to Beverly C's September 7, 2000 - Hi Beverly, I was going through the same thing with Coreg titration. I don't know if you have a fluid restriction but if not, try drinking more water. It raises your blood pressure. I started drinking a bottle of water about an hour before my appointment last week and drank it on the way there. When I arrived and it was time to up my dose to 12.5mg, my BP was 110/68. During my hour there, I finished my bottle of water and their cup of water, I ate my required snack and the Coreg dose didn't affect my blood pressure at all. I walked out with it the same as when I walked in. I've had no problems since. I hope this helps you too. Cheryl. Garciaa@prodigy.net
Donna Z's September 18 reply to Jack's September 16, 2000 - Hi Jack, I also had to laugh at your hanger story, especially since I was just up in my closet getting rid of all the wire hangers. If you need any I have a whole bunch of them. Otherwise, I take them back to my cleaners. Donna. email@example.com
Ben B's September 18 reply to Phyllis A's September 17, 2000 - Hi, I don't know about other states and I don't know about reviews, but I was sent to SSA doctors for my initial approval. In California at least, this is a clinic that is contracted by SSA and does medical exams for all sorts of insurance claims, drug testing, all sorts of "cattle call" type exams. I had written on my application I had pain in my upper back near my heart. In their ultimate wisdom, they did an x-ray of my lumbar region thinking I had back pain like 99% of the people on disability. Then they did an eye exam to rule out blindness. Finally they ran an EKG. Then I talked to the doctor, who basically asked me how I felt and my EF. He didn't measure it, he just asked me. What I am trying to say is that what I told these guys was more influential than any test they did. So tell them everything you just said here. If you feel disabled and can emphasize that fact, they will probably pass you on. Good luck. firstname.lastname@example.org
Renee's September 19 reply to Patti D's September 15, 2000 - Hello Pattie,
I understand your fears all too well especially about receiving a heart transplant. I also was told that I needed to receive a transplant.Well I'm currently 5 years post transplant and I'm doing great. Like you, I was very afraid of being listed but like Davida mentioned, it's only a precaution, not a definite. You will just have time in on the list if it should ever become necessary.
In response to the amount of medications in the beginning after transplant, which I usually like to say within the first year, I call the adjustment period. Within that time your medications will probably be greatly reduced. You will not be taking 40 or more medications. In the beginning is when rejection is the greatest so they have you on lots of medications and large doses of immunosuppressants. Once they have established what amount of immunosuppressant medication works best for you to keep you rejection-free, your medication is often greatly reduced. I know when you haven't gone through it, it is very frightening just to think about. I understand that completely. You will have side effects from the medication in the beginning, since you will be on such large doses but hopefully, once the right amount has been established for you, your side effects will start to disappear. Receiving a heart transplant has changed the quality of my life for the better. If you would like to talk further, please don't hesitate to contact me via e-mail. God bless you! email@example.com
Phyllis A's September 19 reply to Ben B's September 18, 2000 - Hi Ben, I sent you a personal e-mail thanking you for answering my post but I just wanted to comment on your post about continuing to post even when you improve. I for one am a old-timer and I do try to keep in touch here on the board. I try to give encouragement but when I was feeling bad, I didn't want to hear from those who got stable. I needed to hear from those going through it now, so maybe everyone is different. I have received e-mails from the board about having asthma and cancer treatment, which caused my CHF too. People can also help others even though it is not posted on the message board. firstname.lastname@example.org
Jon, September 19, 2000 - Hi everyone, I still have no e-mail at all, sorry. I have no idea if it is Prodigy's fault or my web host. I am in touch with Visa. It turns out my credit union screwed up the renewal on thousands of credit cards. Since I only have the one, this means I still cannot change ISP or web host. As soon as it is possible, I will change ISPs and if that doesn't do it e-mail wise, I will move my site in its entirety to another hosting service. The Urls will remain the same from now on regardless since it is my domain, so it's not a total wash should it be necessary. Strangely, I can receive e-mails from one person only right now - Doug Knuth on Earthlink. Maybe I should go back to Earthlink, huh? <g>
Bill D's September 19 reply to Ben B's September 18, 2000 - Hi Ben, I've been around since Jon started this site. The very first post was mine. You can see I still post occasionally. I'm stable and my last EF was 37%. I just had another stress test - to pay for the new stress tester. <g> I'll report my new EF next week. Bill D. email@example.com
Jon's note: Would Rosie say you are "stable" ? ;-)
Bill D's September 19 reply to Kat's September 18, 2000 - Hi Kat, I'm on Isosorbide Mono too. Because you shouldn't wear a nitro patch all day, I tear it off after breakfast. The 20mg tab of Isosorbide Mono is to keep the angina away until I put on another nitro patch, after my shower (every 3 days or so ). You're not alone sleeping 12 hours a day. I do it every day. Bill D. firstname.lastname@example.org
Jan S, September 19, 2000 - Hi, Does anyone relate to feeling like you're on a roller coaster ride? I haven't worked since March of 1999 and I fortunately did qualify for SSD and have some disability insurance from my job. I was rejected for the transplant list because of extensive scar tissue. So I've been mentally preparing for the worst and hoping for the best. Today my electrophysiologist said I was doing great and that my meds, ablation and pacemaker have stabilized me. At this point she thinks it will probably be my lungs that cause me to decline but it is important that I not try to work full-time and get my flu shots yearly.
On one hand I am grateful for the good news but I have been so conditioned with bad news that I have trouble accepting the good. Then I think, well sure the heart is doing well now, but winter is coming and pneumonia could kill me with my bad lungs. I think I'm going to spend time this week writing my obituary and planning my funeral service and then file them away. I'd love to go back to work but I could never work enough to get insurance again and if I earn too much, I put my Medicare I can receive by next May at risk.
I know God is with me and I have a personal relationship with Jesus, but I'm feeling caught in this chronic illness tonight. Has anyone sorted out these feelings? Thanks for listening to my rambling. Jan S. email@example.com
Barb L S, September 19, 2000 - Hi everyone, I re-read my post and I made mistakes. The CHF specialist did not increase my Lasix because my BP was low. My doctor decreased it and I also had to change to pill form. Barb. Alikeys@hotmail.com
Ruthie A, September 19, 2000 - Hi everyone, Well the weekend proved to be an interesting adventure in beta-blocker therapy. I had to go back on the full dose of atenolol (100 mg) a day sooner than originally planned because the pounding in my chest was so violent it made my whole body move. At least it was easy to count the beats! <g> Anyway, the atenolol caused my heart rate and BP to drop down to dangerous levels again, so I had to come off them for a day to bring the rates back up. My CHF doc cut the beta-blocker dose in half today to see what will happen. There has been talk that I may need a pacemaker but he is hoping that the reduced atenolol dosage will do the trick. The pounding is back but not so strong, so I can live with it for a short while. My heart rate is in the low but normal range, so that is good news. Hope it stays there; I really don't want to get a pacemaker. Guess I'm just chicken! Ruthie A. firstname.lastname@example.org
Mary Lou's September 19 reply to Kat's September 18, 2000 - Hi Kat, My doctor prescribed Isosorbide several years ago for chest pain due to unstable angina. It is a time released form of nitro, as I understand it. I am not presently taking it for CHF. About excessive sleepiness, it's possible that you are experiencing sleep apnea. It's a problem I was bothered with (sleepiness). I had a sleep study done and was diagnosed with apnea, then got my faithful bedside companion - a CPAP mask. Things are much better now. At least I don't feel the need for day time naps as often. At present I am not sleeping well at night due to peripheral neuropathy but that's a whole new problem. Mary Lou. MLBinks@aol.com
Bob Cromwell, September 19, 2000 - Hi, I live in southern Ocean County, New Jersey (Tuckerton) and am trying to find a CHF doctor in the area, since driving any distance is a problem for me. Does anyone know of one to recommend? My current cardiologist is in SOCH Hospital in Manahawkin. email@example.com
Jill M's September 19 reply to Jack's September 16, 2000 - Hi Jack, I have been reliably informed that all the wire coat hangers have been recycled into the paperclip icon used by Microsoft for attachments to e-mails. Jill M. firstname.lastname@example.org
Leland Y, September 19, 2000 - Hi, I have developed some strange, irregular "happenings" that are not PVCs but close to it. My son called them vasospasms after I described it to him by phone. My MD put me on a 24 hour holter monitor and an EKG today. As usual, just like my car, the symptoms never appeared at the office. I am wondering if it will show up in the next 24 hours on the Holter. Most of the "happenings" are very slight but last Thursday one was so great it just about racked me onto the floor. Dr Whittaker does not feel it was due to angina but he also said that vasospasms are not part of CHF. So hopefully the Holter will do its job (if my body behaves properly). Here's hoping everybody is enjoying the last of the summer. Luv and salutations, Leland. LLYEE@socal.rr.com
Leland Y's September 19 reply to Dana W's September 15, 2000 - Hi Dana, I have PolyMyalgia Rheumatica along with my CHF. It's a more exotic form of fibromyalgia, with elevated sed rates. My PMR is held in check pretty well with 5-7mg of prednisone. Since I have been on prednisone for 2 years now, a bone density was done and I passed with 100%. However, I have taken calcium and magnesium in quite heavy doses, which gives me a normal blood value. Please feel free to e-mail me. Luv and salutations, Leland. LLYee@socal.rr.com
Felix O's September 20 reply to Phyllis A's September 17, 2000 - Hi Phyllis, I had a disability review 6 months ago. Basically, SSA needs to prove that your condition has improved and that this improvement has affected your ability to work. Even when your condition improves, you will be considered disabled by SSA rules if that improvement doesn't relate to your ability to work. Medical history and other factors like age, education, and previous work experience are also considered. Please go to Severe Social Security Disability Board a Severe Net and you will have your questions answered by Disability attorneys and Disability determination specialists.
Don't stop taking your medication and keep in mind that you can always appeal their decision and continue to receive benefits during the appeal process. email@example.com
Jon's note: Severe Net is available through a link on my SSD page
Laura F, September 20, 2000 - Hi everyone, Has anyone noticed since being on heart medications that you have sensitivity with gums or gum tissue? It seems as though the gums just on the right side of my mouth have softened and are therefore more sensitive. If I don't floss after eating, I often get small pieces of food in my gums which are very painful. I am wondering if the medications like Coumadin or Coreg might have something to do with this. Does anyone have any thoughts or similar experience? Thanks for the help. In remembrance, Laura. firstname.lastname@example.org
Jon's note: CoQ10 can help gum problems
Kat's September 20 reply to Jan S' September 19, 2000 - Hi Jan, I know exactly how you feel because my lungs were severely damaged when I was very young. Since I had siblings at home, I was sent as a toddler to live with my father's parents, who were Orthodox Jews. My grandfather died when I was 10 but I stayed until I finished elementary school at age 11. Ever since, the rule has been to do all you can to protect yourself against catching viruses in the first place, such as washing your hands (I have antibacterial soap everywhere it's needed) and asking family members to do the same, not only as good hygiene but also after having been outside the home.
If I do catch a virus, I am better off not taking antibiotics as an immediate precaution so what we watch for is fluid in the lungs. If I become congested, I call my doctor or go to the hospital. Early treatment, before congestion becomes pneumonia or puts too much stress on you is the best. Talk to your doctor about this. If he isn't giving you information that helps you to deal with it in a positive way, I would consider finding another doctor.
I know how hard it is not to dwell on the negative aspects. We feel as if we have lost control over our lives. Educating ourselves helps us to regain control over what is happening. Focusing on what we can do is a big morale booster. People here can help provide you with some strategies to deal with your illness, point out issues you need to discuss with your doctor, and provide much needed moral support. Having so much more time on my hands allows me to discover a whole new side of myself, opens me up to exploring interests a busier lifestyle forced me to set aside. There are positive aspects too. Take your life back, just ask away! Kat. email@example.com
Ken S, September 20, 2000 - Hi, My name is Ken Saccucci. I am 58 years old with a wife and two children ages 16 and 26. I am committed to Christ and have been fighting heart disease since 1984. The first signs I had a heart problem came while I was in the service in the 60s and was diagnoised as having a heart mumur. In 1984 I had my first of 6 open heart surgeries. I have had 14 stents placed, many angioplasties and over 40 heart caths.
In 1999 my family and I were in and out of the hospital all but one month. In September of 1999 I had open heart surgery for the fourth time and by October, scar tissue had already formed and a stent was placed in the vessel. Again in November, another stent had to be put in. By March of this year my situation had grown critical and I was sent to another hospital to see if laser surgery would help. My heart was working at less than 35% so this was not an option and another heart surgery was performed. My arteries were 99% and 70% blocked.
Everything that could go wrong went wrong. But for the grace of God, prayers of many friends and the care from fine medical staff and doctors, I would not be here. After the new vessel was put in, my chest closed and an x-ray about to be taken, my heart stopped. The aortic valve I had replaced in 1984 let go. I was opened up again and my heart was massaged for 10 minutes to get me on the heart-lung machine. My valve replaced with a St. Jude's valve. Again they closed me up, but the artery in my right leg where the pump was being used blew and had to be repaired and the pump moved to my left leg. I spent a total of 15 hours in surgery. My chest could not be closed because of swelling so a rubber patch was placed over it until it could be closed the next day. As you can imagine, doctors did not expect me to survive. God had different ideas.
I have suffered from 5 staph infections in my legs and endocarditis through all these years. Up until a year ago I was holding my own pretty well, walking 3-5 miles 5 days a week and working out with weights. However the problem with scar tissue continues to haunt me. I became very ill again about a month and a half ago. Another heart cath was performed 2 weeks ago and I found out that I am suffering from cardiomyopathy. I have severe problems with fatigue, chest pain and fluid retention. I am almost at a halt in my life where fighting fatigue is my biggest adventure every day. My meds I won't even go into except to say I take 12.5mg Coreg twice a day, Cozaar, potassium, 120mg Lasix twice a day, yada yada.
The doctors are sending me to UAB Hospital, Kirkland Clinic, Wednesday to start evaluating me for a heart transplant. I have my bad days like all of you and pray for each of you on this list. Through all the pain and frustration, God has opened a door of prayer to me that makes every day worth being alive. If I can share prayer with you or any other information, please feel free to contact me. Yours in Christ, Ken Saccucci. RevKes2020@aol.com
Ernest D's September 20 reply to Phyllis A's September 17, 2000 - Hi Phyllis, I am being reviewed by SSA too, to see if I still qualify for SSD but I haven't been told to see their doctors yet. I did have to fill out a lot of papers about how I feel and if I have been able to work, which I cannot do. I also had to sign a lot of medical release forms. My cardiologist just did a lot of tests on me and maybe they will use them to decide if I am still eligible. I have been disabled since 1995. I was sent some papers in 1996 just after my second bypass surgery, which I filled out, and haven't heard from SSD until now. I'm not sure how they determine anything so I am just waiting to hear from them. Good luck, Ernest D. firstname.lastname@example.org
Margie F, September 20, 2000 - Hi everyone, I haven't posted in quite awhile. I have some good news - a miracle! June the 28th, I received my new heart. I've had a few problems since then but my heart is doing great. God blessed me with a healthy 19 year old heart. It's really something to think about, that a 19 year old was heroic enough to do such a thing or his family. I sure am trying to take care of this precious gift I was given. God bless all of you and I hope God makes the way easier for all of you. Margie F. MFisher239@aol.com
Jon P's September 20 reply to Jill M's September 19, 2000 - Hi Jill, I was going to comment on Microsoft's use of coat hangers but since I'm a tearrubble typist, I've had to make a lot of spelling corrections and now I can't see through the white-out on my screen! email@example.com
Claire E's September 20 reply to Laura F's September 20, 2000 - Hi Laura and everyone, Yes, my gums are more sensitive now than before CHF and all the meds that go with it. I have to really be careful with my oral hygiene now. I haven't figured out if it's the meds or poor circulation in general. When I am having a bad day, my lips and nailbeds get pale or slightly blue (cyanotic) depending on how bad a day I am having. My feet and hands also get like ice, and get spasms or cramps, so I assume that my gums suffer from these circulatory woes as well. I also find that one form of my angina can be tingling "oversensitive" teeth on my left lower jaw. It took me awhile and a few dentist visits to catch on to that one! One day on a whim, I popped one of my beloved nitros when this happened because I was having a bit of chest pressure too and bam, it went away! Now I know when my lower left teeth tingle that it's time to jack up the feet for a few, pop a nitro and chill out. Pretty weird, huh? Live and learn! Peace and love, Claire. firstname.lastname@example.org
Bill D's September 21 reply to Jack's September 16, 2000 - Hi Jack, Your hotmail address came back. Do you have another? Bill D. email@example.com
Kat H's September 21 reply to Ken S' September 20, 2000 - Hi Ken, I'm feeling very humbled this evening. You've been through Sso much, it is heartening for me when I have to swallow another handful of pills or feel limited by the length of my oxy tubing. I will keep you in my prayers from this day forth. One thing I've noticed with Coreg doses is that mine suddenly seems so high. I read that the maximum dose was 25mg per 24 hours in an ABC News article about using the drug as part of class 4 CHF. I take one 12.5mg tab every 6 hours. That's 50mg in 24 hours and I wonder if anyone else takes so much. I have no problems with it and my doctor says he thinks it just isn't working so well at a the lower dosages, Kat. firstname.lastname@example.org
Jon's September 21 reply to Kat H's September 21, 2000 - Hi Kat, Maybe the media get it right once in awhile, but it's rare. Even Reuters Health has had to print corrections and retractions lately due to poor reporting on medical issues and they are far more reliable than most. The treatment of class 4 CHFers with Coreg is nothing new but is only recently being addressed by fairly large trials. The doses reported are open to change because not enough large trials have been done to definitely establish a different set of dose guidelines for class 4 CHFers as opposed to class 2 to 3 CFers. In other words, docs still have to "play it by ear" with severely ill patients.
The Coreg doses listed in the intro to my Coreg page remain the target doses aimed for by CHF specialists for their heart failure patients. That is 25mg twice a day for CHFers under 190 pounds and 50mg twice a day for patients weighing more. Keep in mind that all heart med doses are dependent on what the individual patient can tolerate, so it will be different for everyone. Nonetheless, these are the official guidelines' target doses. I took 50mg twice a day for years without any significant problems, weighing between 187 and 200 pounds during that time.
Updating my personal Coreg experiment - done in coordination with my CHF specialist - my Coreg dose is now at 6.25mg twice a day. This is the lowest dose Doctor Porter will allow me to use and I respect his medical opinion too much to disregard it; he is always willing to hear me out fully and compromise, if it doesn't go completely against his medical opinion.
Jeanette's September 21 reply to Tracey's September 16, 2000 - Hi Tracey, I am on 20mg Zestril and don't have neck pains or the stabbing you describe. I have been on this for over 2½ years and never had this. I don't think it is the Zestril and I would definitely talk with your docs on this. It may just be another drug interaction with Zestril or something new to deal with. Good luck and take care. I am praying for ya, Jeanette. email@example.com
Jeanette's September 21 reply to Laura's September 20, 2000 - Hi Laura, I was just at the dentist to have to teeth pulled and I can tell you that not only are my gums more sensitive but my healing process is slower. I am in such pain at times and I notice that it takes much longer for me to heal when I get hurt or have anything done. The bleeding is more too. Just a note to let you know you are not alone. Take care, Jeanette. firstname.lastname@example.org
Mike, September 21, 2000 - Hi, Do the symptoms of CHF become more severe as a person goes into the end stage of the condition? Mikemjx@aol.com
Jon's September 21 reply to Mike's September 21, 2000 - Hi Mike, Yes. Perhaps one way to define "end-stage" CHF is that heart failure symptoms become more and more difficult and finally impossible to control. In other words, you become totally "decompensated." However, inotropes that actually increase mortality, morphine (a venodilator) and other measures can be taken to ease the struggle of dying from CHF.
Keep in mind though, that what may appear to be end-stage CHF might actually be quite controllable if treated aggessively by a good CHF specialist! I think many CHFers suffer needlessly and may actually die prematurely just because their doctors are not up to speed on the rapidly changing field of heart failure treatment. Get a specialist and keep him on his toes at all times; A turn-around may be very possible for your quality of life.Jon.
Tom E, September 21, 2000 - Hi gang, My name is Tom. I visited this site a long time ago when I was diagnosed with CHF back in December, 1999. At that time I had an EF of 15% and was a class one CHFer. I tried the Coreg routine but felt worse on the higher doses and stopped it. I was only on Prinivil and Lipitor for several months and really felt good! Then I was told by my PCP that I needed to lose weight. I had quit smoking cold turkey in December. I was on a salt-free diet as it was and also ate anything that stayed in front of me too long. <g> Seriously though, I replaced the smokes with seedless grapes; ate 'em by the bag full! I put on 20 lbs in 6 months, not water, just food.
I went on the Atkins Diet. My PCP was on it, my brother was on it and even my cardiologist was on it. While on this diet I felt pretty lousy after about a week, and also had my first atrial fibrillation episode. I got off the Atkins and went on 1200 calory diet. That was too much for me. I was too hungry. Around July 1st I went back on the Atkins diet, a really bad move. It almost killed me, I swear. God has been so gracious to me in this struggle. I believe it was a miracle to live through my first episode when I was diagnosed. The docs said I probably had very little time left. The Lord definitely saved from this event as well.
I developed a-fib again and went to my cardiologist. I had a strip run and was in rhythm, just fast. He gave me medication to slow down my heart rate and sent me on my way. That evening I went to my sister's 25th wedding anniversary party at a restaurant. My heart rate was at 126 but went down to 72 after I ate dinner. I got up and went outside and barely made it back inside. I went into V-tach and was rushed to the hospital. I lost my life for awhile, and got zapped again on Saturday, not a good time. I had a heart cath and had an ICD put in the following Monday. Everything went beautifully.
In talking with various doctors, I firmly believe the Atkins diet caused this reaction. I am asking anyone else who is on the diet or knows of anyone on the diet with CHF to let them know about my experience. According to what I have read on WebMd, many heart patients have been taken off that diet. Please be extra careful if you are doing the Atkins plan. This is a personal crusade for me. I am now doing wonderfully, with no problems for 2 months! Thank you all for your time. Tom Emahiser. TomE44@accesstoledo.com
Michael M, September 21, 2000 - Hi, I was diagnosed with CHF 3 years ago but also have a history of coronary artery disease, including 2 bypass surgeries, the last being 12 years ago. My ejection fraction has been at 19% and in fact was at that number long before my diagnosis. I pursued more or less normal activities for a man of my age - 73 - until several months ago when leg weakness prevented me from getting around. The past few months I have "washed out" periods which last longer and longer. I am wondering if the disablity from CHF worsens progressively and is indicative of an end stage being imminent. Mikemjx@aol.com
Joy R, September 21, 2000 - Hi, I was reviewed for my SSD several months ago and they decided in my favor. I answered the form letter they sent with all the medical information for the past year and the medications that they asked for. I had been in the hospital 10 times an inpatient and spend 65 days in the ER for IV infusion. I sent a letter my doctor wrote in February of 1998 explaining my condition and my need for home IV treatment. I just answered the questions about how I was doing. I think when they show all the IV medications I was on and the many days I had spend in the hospital, that I was still disabled. I didn't even have to go for a exam by one of their doctors. I can't tell you how relieved I was to hear from them.
Be honest, answer all the questions they ask, for example how many doctor visits, tests and hospitalizations in the past year. It's a good thing they didn't ask for 1998 since I spent most of 1998 in the hospital. In 1999, I spent 10 weeks inpatient. I think what helped me is that I'm still sick, even though I've improved some because of the meds and IVs. I have never gotten over the hump. This was my experience with SSD review and I hope never to get reviewed again. It's nerve wracking waiting in the mail to know whether they will take your Medicare away. No Medicare would be the end of my life. I have a gastrotomy, an illeostomy, a Hickman catheter, with which I do my IVs for my heart and for my nutrition. I also have the DCM and CHF which plagues most of us here. Thanks for listening, excuse the mistakes. With this new post, I can't see all of what I have written to correct it. All of you, good luck with your reviews. Joy. email@example.com
John A, September 21, 2000 - Hi, Can anyone recommend a CHF specialist in Atlanta, Georgia? I had a very bad experience with a cardiologist recommended by my HMO. firstname.lastname@example.org
Phyllis A's September 21 reply to Felix O's September 20, 2000 - Hello Felix, Thanks for the reply. I decided to give it to the Lord and let go, let God. With CHF, HCM and asthma, I'm told that our condition is chronic and ongoing with no cure, so we are still considered disabled. It is in God's hands. Thanks again. email@example.com
Phyllis A's September 21 reply to Ernest's September 20, 2000 - Hi Ernest, Thanks for your reply. I did fill out all the paperwork and release forms but they said they did not have enough info so they want me to go to their doctor, which I don't mind but don't know why they can't determine by what they already have. I called to verify my appointment for 9\29 and told them my cardiologist didn't want me to have anymore stress tests on treadmills. She said no tests were ordered for me, just a physical exam. So we will see. I will appeal if I have to. Thanks again. firstname.lastname@example.org
Bill D's September 21 reply to Tom E's September 21, 2000 - Hey Tom! Does the Atkins diet include grapefruit? If it does, it can really screw up your medicines. A lot of us had a hard time with Coreg. Those with low pulse and low blood pressure had the hardest time of all. Many of us stuck it through and after a while it was miraculous; Really helped us. My EF went from 17 to 36% over the last 6 years. I was in the Coreg (carvedilol) trials, Bill D. email@example.com
Ken S' September 21 reply to Kat H's September 21, 2000 - Hi Kat, I appreciate your prayers so much. Jon's reply to your question was right on. I only started taking Coreg about 2 months or less ago but the doctors felt while they needed to move me up the ladder progressively, they didn't need to waste too much time. I have been at 12.5mg twice a day for about 3-4 weeks. Like Jon, I have noticed some problems with my ability to concentrate or focus on what I am doing, especially if it is technical. Kat, I will pray for you each day. You're the inspiration, not me. Yours in Christ, Ken Saccucci. RevKes2020@aol.com
Tracey C, September 21, 2000 - Hi everyone, I have another dumb question but I've read a couple of stories where people couldn't get a transplant because they'd had viral CM. It had something do with the antibodies. Does anyone know if this is the case or do you just need to find a donor with the same antibodies? Also, can anyone recommend a CHF specialist in the Orange County, California area? Thanks so much and God bless. firstname.lastname@example.org
Kat H, September 21, 2000 - Hi, Regarding SSD applications, if you don't have the information, call the billing office(s) for a list of expenses for all test, appointments, medical offices, clinics, hospitals, whatever applies. This should also include consultants, although you are likely not to have met or even seen them all. List all of them on your application: every test, every doctor who consulted whether you met him or not, or ever will.
I listed a total of 11 doctors, including a pediatric cardiologist. The specialists, including the ones who consulted on test results, carry more weight than your primary care physician or even a standard cardiologist. Some might "only" be clinicians, people trained only to perform echos and report on the results. List 'em anyway. I listed 2. I researched and wrote an article about this (I was a journalist) and the SSA personnel I spoke to in various states all agreed that most people would list only their family physician and or one specialist (such as a cardiologist), whoever they expected to be seeing on a regular basis, and what tests they thought was important, like an arterial scan or MRI.
I had a friend with Cystic Fibrosis who spent 4 years trying to get disability and it still took a court ruling, which is why I wrote the article. What is annoying is that too many people apply because of a temporary disability like a broken ankle and it tends to make it much harder for those who really need it. Guilt? I worked for 21 years. I was legally eligible for disability at 18 but I chose to support myself for as long as I could. In disability, I get slightly more than I used to earn in a week! No guilt. Thanks for listening - I feel better, Kat.
PS. Thank you Mary Lou for the CPAP advice. It is on my list for my next appointment. email@example.com
Claire's September 23 reply to Jeanette's September 21, 2000 - Hi Jeanette, I was so glad to hear that I am not the only "slow healer" around. If I get anything - a cut, a bruise, dental work - it takes forever to heal. I have to watch like a hawk for infection. This past summer I got a terrible spider bite that went into cellulitis. I ran a temperature, had chills, the works. I ended up on antibiotics. Naturally the infection kicked up my CHF and angina. I am getting the impression that we have to treat ourselves with kid gloves. I really hate that! I feel like such a baby. I'm sure it has a lot to do with poor circulation. If I get a cut on my foot, forget it! I do not have diabetes (I have been tested) but it seems like my feet never heal. Does anyone else have this problem? Thanks for listening to me complain! Peace and love, Claire. firstname.lastname@example.org
Tom E's September 23 reply to Bill D's September 21, 2000 - Hi, No the Atkins diet does not include grapefruit. It is a high protein high fat diet with very low carbohydrates. It is designed to put you into ketosis. (Jon's note: Ketosis is an increase in "ketone bodies," which is caused by severely reduced carbohydrate intake. Ketone bodies are any of the 3 normal compounds involved in lipids metabolism. Ketone bodies accumulate when normal metabolism is impaired such as in diabetes or starvation. Blood sugar levels are altered. Essentially, it seems to me that the Atkins diet tricks your body into thinking it is starving, so it burns up your fat without actually starving you to death.)
Ketosis changes your body chemistry and when you do that, you take the chance of messing with your electrical wiring (so to speak). I am sure for those who are "normal" this is not a severe problem, but for me and those I have talked with who have CHF or other heart problems, this diet may be a bad thing. Tom. TomE44@accesstoledo.com
Laurie A, September 23, 2000 - Hi Everyone, First a refresher on who I am: I am age 38 and was diagnosed with DCM, severe Pulmonary Hypertension, CAD, elevated wedge pressure, and have many other things that seem to be on the minor side of all that. I had the left upper lobe of my lung removed at age 17 because of a lung/bone cancer. It is my chemo and radiation they believe that has attacked my heart. This past Monday I went to see a CHF specialist at The University of Pennsylvania. They told me that they don't think I will qualify for a heart transplant but they are going to find out if I could qualify for a heart/lung transplant. They said that only about 50 were done in this country last year (at least that's what I heard through my tears) and that it is very high risk. At this point, they don't know if I will qualify for that either. They wonder about the damage that was basically done to my chest from the radiation and said if I don't qualify we can try other medical routes, like trials. I was wondering if anyone else here has had both done? What type of scarring can cause you to be rejected? Any info on the double transplant would be great. Thanks! Sarg0911@aol.com
Joe S' September 23 reply toTom E's September 21, 2000 - Hi Tom, After a tough 2 years with CHF and everything else. My doctor and I have finally concluded the major cause of all of this was stress and Dr. Atkins' diet. I don't know what it does to our system but for me it was horrible. I was on it for 2 months and came just hours away from death. By the way, it's been 2 years now and by following my doctor's instructions, this board's advice, eating right, exercising and moving to a high, dry climate, I can now say I am nearly well. Joe S. email@example.com
Greg, September 23, 2000 - Hi, Does anyone with with CHF, DCM and so forth have any problems or complaints with their Medicare coverage? I will be going on Medicare this month, also with a supplemental plan and I'm concerned that things won't be covered. I'm already dealing with paying out of pocket for my medications and hoping that there aren't any further surprises. Thanks for your help and feedback. firstname.lastname@example.org
John Len's September 25 reply to Greg's September 23, 2000 - Hi Greg, Although I have been on Medicare for some years, I was under an HMO plan so I never dealt with Medicare direct until the first of this year. So far they have paid for all bills submited by my doctors and hospitals. They even paid for my diabetic test strips without any problems. One problem I did have was over my oxygen generator and bipap machine for sleep apnea. It has taken 8 months for them to stop denying my claims for this equipment and they have finally started paying for them. Best I can say is to make sure it is covered before you get the service unless you are willing to pay for it. They have publications on what is covered and of course, check with the service needed to see if they take Medicare. email@example.com
Kat H's September 25 reply to Laura's September 23, 2000 - Dear Laura, You heard substantially the same thing I was first told. The scarring they worry about involves the nerve, I can't remember the name of it, which governs breathing. During the transplant process that nerve may be damaged while scar tissue is being removed from the chest cavity. This tissue has to be removed to prevent inflammation/infection of the new lungs. Scar tissue left behind can rub against the new lungs when you breathe, causing an inflammation which can then become infected.
If the nerve is damaged (believe me, they know how to be careful) there is a possibility you won't be able to breathe on your own when you wake up. Sometimes patients have to remain on a ventilator and the nerve heals, slowly taking back the job but sometimes there is too much damage. In my case, I was first told "No way - too much scarring!" But new techniques 2 years later have made it an option, although I'm still better off leaving it as my last option. I'd have to have a full heart/lung transplant. In some cases and I might have this, the lung transplant is done first if the heart is fairly stable and then the heart later. Patients seem to do better when both heart and lung aren't done at the same time. It gets the patient over the lung hurtle. I had to find out about this because at first I was moving quickly through stage 3 and the doctors worried I wouldn't respond well to the fairly high doses I'd need almost all at once to stabilize. At the time, I would probably be rejected entirely just because there were too many unknowns, but things have changed and my doctors are more confident now. Good luck, Kat. firstname.lastname@example.org
Bill D's September 25 reply to Greg's September 23, 2000 - Hi Greg, I couldn't wait to be on Medicare. If you're on the original Medicare Plan, all the doctors are delighted to see you. You have the pick of the litter. All those doctors file with Medicare and the Medigap plan pays the rest. The only thing you don't get is money to pay your prescriptions. Gore and Bush are promising a chicken in every pot along with a plan to cover most of your prescriptions. Don't die waiting. <g> Bill D. email@example.com
Gus R's September 25 reply to Greg's September 23, 2000 - Hi Greg, Medicare is similar to many government agencies, particularly the SSA and IRS, in that one never knows what they are going to do. Surprise is their middle name. ;-) Overall, I think Medicare pays about what it says it will, but the problems arise when they decide that a procedure is priced too high, or in their opinion is not necessary. For example: Your doc recommends - and you have - a procedure that costs $500. If your deductibles are met for the year, Medicare will pay 80% of the bill. But, Medicare may decide the procedure should cost $100 or that it was not needed, and pay 80% of that amount. Many supplemental plans will then pay the other 20% but depending on what Medicare did, they may pay as low as 20% of nothing. The bottom line is that you may be out of pocket $0 or $500.
I don't know how common it is, but the HMO I was with preCHF now covers me as a secondary insurer. They also have a supplemental plan but this is very different. Excluding my meds, as a secondary insurer, the HMO pays everything that Medicare does not pay. I thought there had to be some strings somewhere but I've had this combination for over 5 years and have not had any out of pocket expenses for dox, hospitals, ambulance rides, tests, and so on. Another big plus is that I have no paperwork to do. I give the care provider my Medicare number as the primary insurer, the HMO number as secondary insurer and that's it.
I get some (but not all and I see no pattern) "Explanation of Benefits" from Medicare but I can open them or not because the HMO will pay everything Medicare didn't; No surprises, no book work, no headaches. If you want avoid any further surprises, I suggest you look into a secondary insurer. It has worked well for me. I do have to go to "approved" care providers for everything except emergency services, but have been satisfied with them so far. The HMO cost me a total of $1920 for the calendar year 2000, and paid $1000 on my meds. Best wishes, Gus R. firstname.lastname@example.org
Kevin, September 25, 2000 - Hi, The last few weeks have been a real roller coaster ride for me. My routine physical turned into a nightmare. I was told that an echo revealed I had some minor thickening of my heart but that it was very strong. Three weeks later a nuclear test registered my EF at 21% and I was told a virus had probably attacked my heart between the two tests, and I had a 30% chance of getting better. After 2 weeks of prayer and reading the posts on this site, God gave me peace and courage.
Friday I had a heart cath which once again showed some minor thickening but an EF in the 70s. I learned several things from this ordeal that I wanted to share. As long as I trust in Jesus everything will always be okay. Never trust what the doctors and test are saying. If the doc would have carefully studied both tests he would have realized the nuclear test was obviously flawed and they wouldn't have had to shove a wire up into my heart. They are not Jesus so they are imperfect.
Finally, support groups like this are a great tool to use to approach any problem. I know I am fortunate that my story had a happy ending but with Jesus in our hearts the ending is always happy. I will be checking back from time to time but I will always be praying for you guys. God bless. email@example.com
Jon, September 25, 2000 - Hi everyone, I am in the process of moving both my web site and my Internet Service Provider service to a single hosting/Internet company and will have e-mail working by the first of the month, as well as a far more powerful server for my site. If I do it right, you will never notice the move happening. Thank you for your patience. With a reliable server/host and e-mail, I will be able to answer everyone once again in timely fashion. Thank you for your patience. By the way, all my Urls will be exactly the same so your favorites/bookmarks will continue to work just fine. Jon.
Robin B, September 25, 2000 - Hello everyone, My name is Robin and I must say that this is the most wonderful site I've ever seen. I went into CHF 4 days after my son was born. Let me give more details. I'm age 32 and on Thursday, April 13, I delivered by C-section my beautiful baby boy, Kevin. After he got here I seemed to be doing great. I was up and walking all over the hospital. I was on the second floor and was walking to the elevators and outside to smoke. I know smoking is a huge no-no but I plan on getting on Zyban as soon as things get back to normal. Anyway, I was really doing great.
On Friday around noon my blood pressure started going up and my nurse berated me and acted like it was all my fault and warned me that if I didn't get it back down she was calling my doctor. She had been a huge pain the whole time I was in the hospital and I told my OB/GYN about how hateful she had been to me on Saturday morning. He called the head nurse and we reported the way she had treated me. My blood pressure was still up a little so my doctor didn't want to release me but I talked him into it since we both figured it was due to the nurse stressing me out and since I had really been doing so well. So I was home by around 2:00 that Saturday afternoon with a handsome new baby and Cecily just loving it that her momma was back home. I loved it too.
When I started to go to bed Saturday night I couldn't lay down because I was having trouble breathing. I told my husband about it but he didn't think anything about it and went on to bed. I continued to sit up until I was so tired I couldn't sit up anymore. So around 1:00 AM I went ahead and lay down. Of course I lay down on my left side since that is the way they recommend for pregnant women to sleep because it helps to ease heartburn and I was still in that habit. I woke up at around 5:00 AM hyperventilating and coughing up blood (pink sputum). My husband rushed me to the closest hospital, which was different from the one where my son was born.
Luckily a really good respiratory specialist was on duty and had me throughly checked out. I was diagnosed with CHF, possible pneumonia, and possible blood clots. The doctor started immediately treating all 3, which was later in the afternoon after they had done all sorts of test. During my second echocardiogram I had a really bad time of it as they lay me on my left side and all the fluid collected around my heart and filled my lungs. I came as close to dying as I ever care to during that. By Saturday night I had been given antibiotics for the possible pneumonia, shots in my stomach for the possible blood clot, and Lasix for the fluid build up. I lost 10 pounds that night in fluid, which after having a baby wasn't a bad thing. <lol> I'm currently seeing a cardiologist who tried me on an Ace inhibitor but those really exhausted me and I couldn't take them and deal with 2 babies. My cardiologist had a cardiac cath done and all my blood vessels and valves looked great but my heart is only pumping at 40%. I am currently on Coreg. I'm up to the 6.25mg dose and am having some trouble breathing and having a lot of pressure on my chest, but I'm trying to stick it out since my cardiologist said if this isn't fixed soon it might become permanent. I'm still really tired and I definitely have my hands full but I'm hanging tough.
Can anyone offer me any insight as to what happened? The doctors still aren't sure if it was a pre-existing problem or if it was brought on by the pregnancy. Is there hope? Will I get better? What is in my future? Can anyone offer me some answers? I would really appreciate it. Sorry this was so long; I just haven't ever talked with anyone else who has been there. Thanks so much for your time and for listening. Robin. KendallKB@aol.com
Jeanette's September 26 reply to Claire's September 23, 2000 - Hi Claire, Don't feel that way. You are a woman who has DCM and CHF, and you can't help the way you heal. Yes, we have to be more careful but we must also live our lives and can't be like a pheasant under glass that is all protected. We have a disease that interferes with the healing process and there is really nothing we can do about it. I get mad too, but if we were to stay home in a plastic bubble I would rather have this disease take me than have to do that. Just be careful when using sharp objects and don't go barefooted. I found that out the hard way! When you get cut, make sure you irrigate it with peroxide and use Neosporin cream right away. That will help it heal much more quickly if you do it right away. As for the feet, I would talk with your doc about that. It may be poor circulation or something else. Just a suggestion. Take care and God bless, Jeanette. firstname.lastname@example.org
Yvette W's September 26 reply to Robin B's September 25, 2000 - Hi, I am now 30 years old. I developed PPCM in 1996 at age 26, diagnosed 3 months after the birth of my daughter. I had all the symptoms you had. I couldn't lie flat, waking up several times during the night feeling like I was drowning. It actually took 2 trips to the emergency room before I was diagnosed with something other than a cold. The doctor who said that was young and arrogant. However, I did not know at the time that anything like this could even happen. Well I guess I should have known something was wrong, since about every 2 weeks during the last trimester they kept doubling my blood pressure medicine. Unfortunately there is no definable explanation as to why some women develop severe heart problems but take heart. From books I have read and from my doctors, a lot of women actually get better to near perfect. That was about 2 years ago. By the way, at 40% you're doing great. I am at a 25% EF, a 1% increase over last year. You may actually want to go to www.jumphealth.ppcm.com/, which is a web site dealing with PPCM. Mommahouse@att.net
Tonya Dean's September 26 reply to Robin B's September 25, 2000 - Hi Robin, I was diagnosed with CHF 3 weeks after my second child was born. I take Lasix and Coreg too. Keep reading this site because it is truly a godsend to all of us. E-mail me with any questions you may have. Getting answers will only help speed your recovery, Tonya. email@example.com
Felix O, September 26, 2000 - Hi Jon and everyone, Since I started working again, I have been feeling a mild burning sensation on my chest every time I get stressed. I never had chest pain or discomfort before and a previous cath showed no CAD and clear arteries. Does anyone else have this symptom? I am currently taking 50mg Cozaar and 50mg Toprol daily. firstname.lastname@example.org
Marilyn Cook, September 26, 2000 - Hi all, I checked in here about 3 years ago but thought I was in the wrong place. It looked like everyone here was much sicker than I was and much younger. Well, it's been 3 1/2 years, and of course being age 70, I decided I didn't need a cardiologist. Besides my primary doctor said I wouldn't need one. I went through the echocardiogram and all that stuff, and everything came back pretty good, within normal limits. So the doc put me on Imdur, Accupril, and Bumex.
Three years later and things are not good. My breathing is a chore, so doc is sending me to a cardio-pulmonary specialist. I feel useless because any activity is hard. My faith in God has never faltered so He will get me through this mess or not. It definitely is in His hands. It does get kind of lonely out here, so it's nice to come here and get out of the cold. I will check in after I see the specialist. email@example.com
Patti D, September 26, 2000 - Hi everyone, I want to thank all the people who responded to my message through the board or by sending me a direct e-mail. This site and the people on it are wonderful. I started on a higher dosage of Coreg (6.25mg twice a day) in early September and while the lower dosage didn't bother me, the higher dose has me sleeping 10-12 hours a night and sometimes taking naps, although I haven't had to nap in over a week so I guess I'm getting used to it. I'm wondering if any of you ex-smokers could offer some advice on how to quit smoking. My doctor originally told me to cut back to 10 cigarettes a day. I've been a smoker for 29 years and normally smoke 2 packs a day. Then he was going to try to taper me down to no cigarettes but because of being home all day instead of working and being depressed (I'm taking the anti-depressant Paxil) I'm back to smoking a pack a day and sometimes even more. I know how bad this is for me but in 29 years I've never gone even one day without my cigarettes. They are the first thing I want when I wake up in the morning. Any ideas anyone can give me on how they quit smoking would be appreciated. Again, thanks to everyone who responded to my first post and everyone on this message board. I guess it makes me feel less sorry for myself to know that there are others out there as young as I am (44) who have serious heart problems. firstname.lastname@example.org
Karen R's September 26 reply to Robin B's September 25, 2000 - Hi Robin, My situation was similar to yours. I had a high risk pregnancy with no signs of heart problems. I had been hospitalized for premature labor for 3 weeks prior to my daughter's birth. The first thing I noticed was that I couldn't walk 10 feet without becoming short of breath and that I couldn't lay down and sleep without coughing. Finally, my husband insisted on calling the doctor. They did a chest x-ray, EKG and echo on my heart. Those results sent me to a cardiologist immediately. I was told that I had DCM with CHF and that my EF was probably 30%. We did an angiogram (cath) that said my EF was 15-20%. I was very scared.
They started me on meds right away and now almost 2 years later my EF by echo looks to be about 45%. I'm still tired a lot of the time and experience shortness of breath occasionally. If I'm up and about too much, I get chest pains. The only thing I would like to say is that it is hard to keep yourself first when you have small children but it is so important. Take your meds, rest when the kids rest, and let other people help you with them as much as possible. The hardest thing right now is that my son is 5 and my daughter is 2½. It's hard to get the rest I need. My doctors didn't know much either, but with this website and others, you can get educated and get positive support. Good luck. Karezybear@aol.com
Mike J, September 27, 2000 - Hi Jon, I just had my regular physical. It has been a year and a half since they told me a virus attacked my heart, so here's my update: My BP is 130/80 and my blood work was perfect. I am not retaining any fluid and my prognosis is good. Like anyone, I must do everything I can to stay that way. I am thrilled but wanted to let anyone know who wanted to know that my doctor will not let me go on the Atkins' diet. He said no way, and that was the end of that. I love your site and you have given me hope when everything seemed dark and very, very, bad. Your info has helped me so much and even though I am okay, I know that could change if anything drastic happened to me. Thanks for your wonderful work and God has blessed us all to have a friend like you. God bless you and have a great day, Mike Joye. email@example.com
Jon's September 27 reply to Mike J's September 27, 2000 - Hi Mike, That's great news! I say enjoy feeling good! Thanks for the kind words too. This site runs on the "Motivation by Jesus, mistakes by Jon" principle, but He does keep it running. <g> Jon.
Jon, September 27, 2000 - Hi everyone, Sorry about slow posts and being hard to reach. I am moving this week to another server and getting configured (man, I hate that process!). I should be right as rain by the first of the month, technologically speaking. Jon.
John Len's September 27 reply to Greg's September 23, 2000 - Hi Greg, It's also a good idea to check any provider (doctor, etc,...) to make sure they will accept Medicare's payment scale for that visit or treatment. Otherwise you may get a bill for the part of the charge not covered by Medicare and that may or may not be covered by your secondary insurance, depending on your coverage. firstname.lastname@example.org
Laurie A, September 27, 2000 - Hi Everyone, First let me thank everyone for all the support I have been getting from all of you! Today my CHF specialist at Penn decided that I am going to have to have a right heart cath done next Thursday, because despite that fact that I follow my sodium and my fluids, I am still having problems retaining fluid so he wants to see where we are heading since my last cath in June. Call me someone who isn't accepting reality but I have this feeling my numbers are going to be better. I just have too much stuff to get done to not be getting better! I will let you all know how it goes. Thanks again! Sarg0911@aol.com
Jon, September 30, 2000 - Hi everyone, I have good news and bad news. The good news is that everything is moved and working, including my e-mail. The bad news is that I think I have forever lost any posts sent in the last 2 days. There is literally no way for me to retrieve them. I am sincerely sorry. Hopefully, now everything will be much smoother. My current host is dedicated to business hosting and has two T1 lines with really excellent tech support, so I hope the sailing is much smoother from here on out. Jon.
Tonya Dean, September 30, 2000 - Hi, I am having my pnuemonia shot on October 2. This is my first ever pneumonia shot since my CHF diagnosis last December. Are there any nasty side effects from this shot that I should look out for? Do you think it will flare up my CHF? My EF in May was 45-50% and I am so paranoid with the cold weather coming on that I will get sick again. Any suggestions? Thanks, Tonya. email@example.com
John Len's September 30 reply to Patti D's September 26, 2000 - Hi Patti, After being a living chimney for 16 years I decided to quit. My first attempt was to reduce from 2 packs a day to one. Guess what? I wound up smoking 3 packs a day. I decided to go cold turkey so I started the morning off with a fresh unopened pack in my shirt pocket. I could take them out, smell them, lick the wrapper, but I did not open that pack. This went on for about 2 weeks. I went through withdrawal symptoms for about 3 day to a week. I worked every day though, which was not fun and had to explain my weird behavior - kind of a spaced out feeling - to anybody that gave me that "look."
The next few weeks I had a sort of a feeling of loss for an old old habit but gradually it got fainter and fainter. After the second week, the cigarettes went into my suit jacket pocket for another month, then into the glove compartment of my auto. The point was that my crutch was always available and as has been said, I could hold the pack, smell the pack, even lick the pack but never opened it. After about 4 months, I gave away nearly a full carton of ciggys. I kept my beloved unopened pack of cigarettes for about 6 months and quietly buried tham in a place of honor. ;-)
By the way, no filters for me; Luckys, then later Pall Malls - hack, cough, cough. firstname.lastname@example.org
Ben B, September 30, 2000 - Hi, I don't know if this post got lost, but I saw an interesting item on TV. It was about a hospital in Philadelphia where they are taking slices of skeletal muscle from transplant patients and grafting it into their heart to replace bad muscle and scar tissue. This isn't cardiomyoplasty. They are actually sewing it to the heart. After the people get their new hearts they are going to check out how the new muscle took. It is very experimental of course (6 patients) but sounded interesting. email@example.com
Jon's September 30 reply to Ben B's September 30, 2000 - Hi Ben, That is an interesting trial about heart attack survivors. I wonder how much they relied on Doris Taylor's research at Duke University. It sounds like the same research but I did not see her mentioned in any of the news releases. Jon.
Tracey C, September 30, 2000 - Hi Jon, First, thanks again for this wonderful site! It gets me through tough times. I had a second opinion and this cardiologist wanted to start me on Aldactone even though I don't normally hold water. Are there any other benefits to this drug than a diuretic effect? Secondly, since my diagnosis and meds I have developed a really, really strong pulse in my stomach, to the point of not being comfortable lying face down. I did ask my doctor and he said, "Don't worry about it." I'm wondering if you or anyone reading has experienced this. I'm only 33, which is supposedly too young for an aortic aneurysm. Finally, the doctor gave me my heart size and simply said I was in the normal range. I can't find anything to give me the guidelines for "normal" and was hoping you could help. Thanks again for everything and God bless, Tracey. firstname.lastname@example.org
Jon's September 30 reply to Tracey C's September 30, 2000 - Hi Tracey, I'll be placing the normal range of heart sizes, along with other heart info on a separate page in my FAQ within the next week. Until then, you can get them on the echo page, in the article at the end, listed in framed tables. Aldactone info is here. It may actually improve mortality at doses too low to have a diuretic effect (25mg daily).
As to age, if a doctor tells you that you are too young to have this condition or that problem and then proceeds not to check you for it, fire him today! Get checked for that problem tomorrow by a better doctor. That's my advice. My ex-doctor almost killed me that way. Jon.
Mary H, September 30, 2000 - Hey Y'all, It's been awhile since I had anything to post. However, I have been here at least twice every day to read about everyone else. Last Wednesday, I had an appointment with a new cardiologist. He decided I was over-medicated and proceded to pull me off almost all my meds. He left me on Mavik (trandolapril) and halved my Zebeta (bisoprolol) dose. Lasix, potassium and Mag-Ox all went bye-bye. The Mavik is my ACE inhibitor and the Zebeta is my beta-blocker. It seems as if the meds were the cause of my fatigue, depression, memory loss and overall feeling of lifelessness. This came as a surprise since only a few weeks ago, my CHF specialist told me the opposite. Thanks for everyone's input on changing doctors. Now, I only pray that this one is on the right path. Also, I obtained my medical records and was quite shocked to find information I wasn't aware of. I found my cardiac output numbers and the doctors' thoughts they never seemed to reveal.
As for the chest pain I experience that feels like pneumonia when I breathe, this doc says he believes it is an unrelated problem to my heart issue. He will tell me nothing else until my echo Tuesday. He will do this himself instead of a tech. This really impressed me even more. He sat and listened to me, took notes, and looked me in the eyes when we spoke. I think I'm in love. I should have made this move sooner. My husband says for me not to get my hopes up and to stay grounded. I have been walking on clouds since my appointment. My prayers are on the hope that he is right and my other doc overreacted to the severity of my cardiomyopathy. Thanks again to you all for the love shared here. By the way Jon, your towel monkey grew into a beautiful young lady. I continue to pray for everyone and love to all, Mary Hickerson. M123_@excite.com
Bill D's September 30 reply to Tonya Dean's September 30, 2000 - Hi Tonya, I had a pnuemonia shot when my EF was 37%. It didn't bother me a bit! I'll bet you that some other guy tells you he had a lot of trouble with his. Bill D. email@example.com
Jon's note: Mine was smooth with no after effects
Rick M's September 30 reply to Patti D's September 26, 2000 - Hi, My brother used to say, "It's very easy to give up smoking. I've done it 3 times in the last month." Seriously though, I don't think there is a better way than cold turkey. In my case, I smoked from early in WWII when the Navy gave them away free till October 16, 1969 at 9:50 AM. I was handing out copies of the agenda for a very important business meeting when I realized that every person there had offered me something to smoke as I went around the table. I was recovering from a cold and didn't feel like smoking so when I arrived at the head of the table where the chairman was sitting, I said, "No thanks, I just gave up smoking." Well, he took out his little blue notebook and wrote, "Rick says he's given up smoking, check him in 60 days." That's all it took. I wasn't going to give him the satisfaction of being right, so I quit on the spot and haven't smoked since. I recommend this method to anyone who wants to quit anything - just announce it publicly and pick your least favorite friend to record it for you. That way you won't be tempted to ask any favors. <g> 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.