Pat 8-1 something to consider about Disability
Cristina L 8-1 question - that 5 year life expectancy thing
Dorothy 8-1 correction to last post
Jim's 8-1 reply to Dorothy's 7-31 blood pressure average formula
Amelia's 8-1 reply to Cristina L's 7-26 Cordarone (amiodarone) experience
Autumn 8-1 update, not good news
Jon 8-1 page updates
Alexis' 8-1 reply to Dorothy's 7-31 low diastolic blood pressure
Amelia's 8-1 reply to Autumn's 8-1 doctors, back problems & more
Brandy's 8-2 reply to Cristina L's 8-1 5 year statistic, things to remember
Gail 8-2 5 year statistic - hooey
Ginger's 8-2 reply to Amelia's 8-1 back pain, doctors, crying & more
Katherine H 8-2 Coreg reaction? & more
Jon's 8-2 reply to Katherine H's 8-2 benadryl and Toprol-XL
Don C's 8-2 reply to Cristina L's 8-1 that 5 years to live thing
Jon's 8-2 reply to Don C's 8-2 my view of the 5 years to live statistic
Tom L's 8-2 reply to Anthony's 7-26 gas and belching may be drug related
Dana Goff's 8-2 reply to Bill D's 7-26 thanks & seek private disability insurance experiences
Tracey C 8-2 coping with CHF & more
Rick J's 8-2 reply to Katherine H's 8-2 Coreg and little red bumps experience
Amelia 8-2 living beyond that 5 years
Cristina L's 8-2 reply to Jon's 8-2 the 5 year thing, family & more
Mary Beth 8-2 intro, is this hereditary?
Jeanette's 8-3 reply to Mary Beth's 8-2 hereditary heart problems
Joe S' 8-3 reply to Cristina L's 8-2 living with heart failure
Michael 8-3 tip for veterans with disability
Ginger's 8-3 reply to Mary Beth's 8-2 familial cardiomyopathy
Carol O 8-3 thanks for the site
Joshua 8-3 thanks for the site
Jon's 8-3 reply to Joshua's 8-3 info, doctors
Fred D's 8-4 reply to Michael's 8-3 Disability application
Autumn's 8-4 reply to Tracey C's 8-2 doctors, treatment & more
Jon's 8-4 reply to Autumn's 8-4 meds possibilities, doctors & patients
Madelyn J 8-4 ACE inhibitor side effect
Brandy's 8-4 reply to Joe's 8-3 you're a good example
Jon 8-4 note about Doc Silver's answers page
Fred D's 8-4 reply to Autumn's 8-4 I would suggest nitro
Ruthie A's 8-6 reply to Madelyn J's 8-4 angioedema - anyone else?
Katherine H 8-6 thanks - Coreg and rash update
Victoria 8-6 should mitral regurgitation worry me?
Ruth Powell 8-6 does anyone else get these episodes?
Connie R 8-6 good news about my disability
Jon 8-7 back later
Dorothy P 8-7 Tegretol info
Autumn's 8-7 reply to Victoria's 8-6 mitral regurgitation
Autumn's 8-7 reply to Ruth Powell's 8-6 dizziness experience
Beth C's 8-7 reply to Madelyn J's 8-4 angioedema as late ACE/ARB side effect
Tracey C 8-7 seek pork source in southern California
Mary Lou's 8-7 reply to Ruth Powell's 8-6 similar experience & more
Ruth Powell's 8-8 reply to Mary Lou's 8-7 thanks & more
Michele 8-8 seek CHF doc in southern California
Claudia S 8-8 seek info on Toprol-XL versus Coreg
Lisa E 8-8 seek liquid supplemental nutrition drink
Janet Harris' 8-8 reply to Ruth Powell's 8-6 dizzy episodes & more
Janet Harris' 8-8 reply to Claudia S' 8-8 Coreg versus Toprol-XL
Dorothy P 8-8 desensitizing reactions to oral meds
Tracey C's 8-8 reply top Michele B's 8-8 CHF specialists
Sally M's 8-8 reply to Beth C's 8-7 angioedema experience & more
Vicki 8-8 thanks for all the info
Jon 8-8 thanks to all & to Bill D
Jack D's 8-8 reply to Lisa E's 8-8 gaining weight when too thin
June 8-9 should EF go up and down a lot?
Brandy 8-9 is heavy sweating normal in CHF?
Lee R's 8-9 reply to Jon's 8-8 EF variation & note to MaryLou and others
June's 8-9 reply to Brandy's 8-9 heavy sweating
Janet 8-9 update, note on angioedema side effect
Joanie 8-9 cough as ACE inhibitor side effect
Mary Lou L's 8-9 reply to Ruth Powell's 8-8 getting this thing diagnosed
Pat M 8-9 why so sudden? & more
Amelia's 8-10 reply to Brandy's 8-9 heavy sweating, question about friend
Ben B 8-10 obesity cardiomyopathy
Joe S' 8-10 reply to Brandy's 8-9 heavy sweating
Bill B 8-10 questions about gall bladder removal & more
Alexis' 8-11 reply to Mary L's 8-9 ocular migraine experience
Amelia 8-11 ACE inhibitor dose, anxiety & more
Jon's 8-11 reply to Amelia's 8-11 ACE inhibitor dose
Bev T's 8-11 reply to Ruth Powell's 8-8 same symptoms - a possibility
Joanne R's 8-11 reply to Ruth P's 8-6 dizziness and blurred vision
George 8-11 questions about Coreg dose & low blood pressure
Erceal's 8-11 reply to Amber's 8-4 intro, book suggestions & more
Erceal's 8-11 reply to George's 8-11 low BP, Coreg & more
Tony T's 8-11 reply to Joanne R's 8-11 visual disturbances & more
Tracey C 8-11 visual disturbances
Bill D's 8-11 reply to Joanne R's 8-11 visual floaters & flashes
Davida's 8-11 reply to George's 8-11 bad Coreg experience & more
Elton8-11 Coreg treatment questions
Scott S 8-13 has anyone had a wrist cath?
Erceal's 8-13 reply to Elton's 8-11 CHF treatment
Mary Lou L's 8-13 reply to Alexis' 8-9 migraine symptoms
Janet Harris 8-13 visual disturbances
Amelia 8-13 meds and side effects
George's 8-13 reply to Erceal's 8-11 Coreg dose, SSD & more
Robert H 8-13 Myovive question
Jon's 8-13 reply to Robert H's 8-13 Myovive info
Christy W's 8-13 reply to George's 8-11 raising Coreg dosage
Tony T's 8-13 reply to Amelia's 8-13 verapamil
June's 8-13 reply to Amelia's 8-10 reading your medical records & more
Amelia 8-13 new drug?
Jon's 8-14 reply to Amelia's 8-13 new drug is Natrecor (nesiritide)
Elton 8-14 CHF specialists - seeking one
Jon's 8-14 reply to Elton's 8-14 CHF specialists
Autumn 8-14 feeling very down right now
Tom W's 8-14 reply to Scott S' 8-13 radial cath (wrist cath) experience
Mandi P 8-14 seek advice about my situation
Jon's 8-14 reply to Mandi P's 8-14 see a CHF doc immediately
Tracey C 8-15 why did my BP go down?
Davida's 8-15 reply to Mandi P's 8-14 stopping and restarting meds possibilities
Brandy's 8-15 reply to Elton's 8-14 Tulsa, Oklahoma cardiologists
Stephanie 8-15 seek opinions on driving
Clarence M 8-15 did anyone hear about a new CHF drug?
Walter K's 8-15 reply to Elton's 8-14 transplant cardiologists
Sheryl 8-15 Coreg questions
Jon 8-15 page update - Natrecor
Pat T's 8-15 reply to Stephanie's 8-15 driving changes with CHF
Ben B's 8-15 reply to Stephanie's 8-15 driving changes with CHF
Pat, August 1, 2001 - Hi, To everyone filing for SSD. I became disabled with CM, CHF and PH on May 1, 2000, and I filed for SSD September 9, 2000. I was denied, filed appeal for reconsideration, and again denied. I filed for appeal with an adminstrative law judge and have been waiting for my hearing. The good Lord must have been looking down on me and gave me a judge that had a heart because this past Saturday I received a letter informing me I would not have to appear for the hearing because he ruled in my favor after reviewing transcripts.
Something everyone going to see an attorney needs to ask is how far are they willing to fight. I found out some lawyers will only go as far as appealing the adminstrativelLaw judge decision and were not willing to go further. So how willing is a person to go? If you are on long-term disability from a previous job you have to go all the way or they can cut off disability payments. I got my lawyer after my first denial letter. In Texas and happy! email@example.com
Jon's note: I never thought about this. My attorney told me at our first meeting that if we lost, we would take it to federal court and sue SSA for Disability there.
Cristina L, August 1, 2001 - Hi, Maybe I'm obsessed with reading whether on the Internet or in newspapers and books but like Ben said, when I read life expectancy of 5 years, it makes me panic. My doctor says I will probably outlive everyone I know. I feel great and my doctors say that I'm doing much better and my heart is almost normal size but my EF is still only 25%. My concern is that I have two very young children and I need to live long enough to help them grow up. How did you "snap out of the panic?" Maybe I need to do the same, Cristina. firstname.lastname@example.org
Jon's note: See www.chfpatients.com/archives/archive2_7-2001.htm#Jon7-13replyPaula7-13
Dorothy, August 1, 2001 - Hi Friends, I should have said the diastolic or bottom number of my blood pressure has been as low as 40. Obviously, I really would be in trouble if the systolic reading of 40. Thanks, Dorothy. DPowell806@aol.com
Jim's August 1 reply to Dorothy's July 31, 2001 - Hi Dorothy, I have very low blood pressure and was told I would be alright as long as some average was above 60. I think it was called the average arterial pressure(?). To figure the average, multiply the low number in your BP by 2, then add the high BP number and divide by 3. Example - BP = 90 over 60; average = 90+ (60 x 2) / 3 = 70. Apparently if the average consistently falls below 60 the kidneys don't get enough blood to function. Sorry I don't remember the details better, but I hope this helps, Jim. email@example.com
Amelia's August 1 reply to Cristina L's July 26, 2001 - Hi everyone, Jon, I am sorry to hear about you having bad days. I sure hope you feel better soon as well as everyone. Cristina, I am on 400mg of Cordarone (amiodarone) and it has helped my PVCs and my a-fib. The only side effect I have is being very tired and sleepy. I am also on 10mg Vasotec, Coumadin and Lasix so who knows which one may be the cause. I am wearing a 30 day heart monitor so the doctor can tell if amiodarone is keeping my heart stable enough not to throw clots (I had 3 TIAs).
I go to my CHF doctor Thursday, August 9, so I will know more about the meds then, even though he is after me to have an EPS, hopefully to zap the bad cells and take less meds. It's been 3 months that I have been having lab work to regulate my Coumadin. My veins are so bad and they get inflamation, so I hope the next step won't be my feet. Prayers and best to all. firstname.lastname@example.org
Autumn, August 1, 2001 - Hi everybody, I seen 2 of my docs today and got more bad news. My spinal MRI shows that not only is one disc shot but the 3 bottom ones are severe and the bulging and bone spurs are pressing against my spinal cord. All but 2 of the rest of my spinal disks are strongly deteriorated. They cannot do surgery because it would be at least a 12 hour surgery and they do not think I would survive it. Also, they think that if they fused the 3 worst disks, in another 3 or 4 years I'd need 3 more fixed and then more down the road. They consider my condition inoperable so I will be facing worse pain and probable paralysis.
As it is, in 2 weeks I have progressed from a weak left leg with reduced reflexes on the left to worse neuropathy and no reflexes at all in either leg. I heard the doctor tell the nurse after they walked out, "If that woman ever falls or slips on the ice she will be paralyzed." They have scheduled me for a lumbar puncture to rule out MS since they have been questioning since 1985 whether I might have a very mild case. In the past month two of my doctors have told me that there are so many things wrong they feel overwhelmed. I know I am, but I don't want my doctors to feel so overwhelmed that they give up.
I am being passed from one specialist to another - 12 different doctors or testing facilities in 2 months. My back doctor says right now I can lift 10 to 15 pounds but that it may get to the point where I can only lift a pound. He had been so forthright in telling me everything but when I started crying he was out of there like a shot. I am still bugged at myself for crying because I want the doctors to be straight with me and they won't be if they think I can't handle it.
My first reaction after I left there was to just give up the fight; quit staying on a low sodium diet, quit trying to lose weight and lower my cholesterol, quit trying to exercise. What's the use if I'm going to be paralyzed or only able to lift one pound. However, I'm a survivor and I want to live this life as long as I possibly can. If I do the best I can with my weight, food and exercise, maybe the benefits will carry over for a time even if I end up in a wheelchair. My biggest concern would be that the disabling condition and the lack of exercise will do my heart in. My doctors have stressed how important exercise is to keeping me out of heart failure. About 6 weeks ago one of my doctors suggested I request home health aid to help me with my housework but I have not been able to do so because I am able to walk around and do things. My husband now insists I do it so I can save my back as long as I can. I guess saving my back as long as I can is also saving my heart as long as I can. Instead of making my back worse with bending, I could use the energy to make my heart better by doing more walking. It is very hard to ask for that help when I "look okay."
I sincerely appreciate you all for listening and being here. I do not know where I'd be without you and I'm sure my husband feels the same. <g> He always listens but I know it's hard on him at times with so much going on. Here is like a home away from home, Autumn. AmberDawn-Blzn@webtv.net
Jon, August 1, 2001 - Hi everyone, The following pages on my site have been updated or added:
Alexis' August 1 reply to Dorothy's July 31, 2001 - Hi, I had a problem with low blood pressure a few months back and my doc told me to call him if the diastolic number ever fell below 50, so he could adjust my meds. Asmth@aol.com
Amelia's August 1 reply to Autumn's August 1, 2001 - Hi Autumn, My heart goes out to you. I had the same thing happen to me about the doctor walking out. Never, never put yourself down for normal expressions of your feelings. I had lost my eye sight temporarily due to a mini-stroke and while explaining to the doctor what happened I also started to cry and he handed me a box of tissue and said "Don't go and get hysterical." Well that was the end of him.
As for the back, I have discs pressing on nerves too, causing a great deal of pain and numbness of my thigh, with slipping vertebrae of the spinal column and cervical disc disease so badly that on x-ray it looks like I had fusion surgery. My neurologist told me not to lift anything more then 5 lbs, no extending my neck up or down. Physical therapy does not help. I asked him if I would ever be paralyzed due to the vertebrae slipping and he said if I had a bad accident it would be possible. I am not supposed to do any kind of exercise yet per CHF doc orders.
I know you have a much more serious problem and I pray that all will not be as bad as they are telling you. Live each day to the fullest and do not dwell on what you cannot do but try to concentrate on what you can do. Hobbies help me. Prayers to all, Amelia. email@example.com
Brandy's August 2 reply to Cristina L's August 1, 2001 - Hi Cristina! I am Brandy Lee, aged 22 with PPCM, which I believe is what you have? Am I right?
Anywhoo, I improved from a 30% to a 52% EF in 9 months, but I don't feel well most of the time. You have to have faith that you will see 10 years, 20 years or even 60 years. I have been told I was going to live 5 years or less too but that is old research. There are so many new procedures out now. Remember to exercise, remember to watch your sodium intake, remember to watch your fluid intake, remember to take your medicine and remember to stay positive. Attitute is the key factor here in my opinion. ;-)
I have a 5 1/2 year old and a 1 1/2 year old. I was told by one nurse I would never be able to see my daughter go to kindergarten - Brittani starts school August 16th and I am just waiting to prove 'em wrong. <g> If you ever need to talk, please drop me a line. TNBLee@prodigy.net
Gail, August 2, 2001 - Hi, It was one year ago today that I was hospitalized with CHF. I went through the initial panic too, reading about the 5 year survival rate. One year later I am better than ever with low blood pressure, able to walk 2 miles a day and feeling great. This bulletin board has really been a source of strength for me, Gail. firstname.lastname@example.org
Ginger's August 2 reply to Amelia's August 1, 2001 - Hi Amelia and Autumn, First let me say Autumn, that I am very sorry about all your troubles. Back pain is no joke. I live with it but not as bad as yours. I also am being told no surgery for now. Same to you Amelia - I am sorry you have to go through this. I guess I am a little luckier in some respects and one is that when my cardio doc gave me the bad news that my EF had dropped and there were some other changes that were significant, I broke down crying. I tried telling him I was sorry. He put his hand on my shoulder and said not to worry about it, crying is a natural reaction for anyone receiving bad news. So I learned from you two that I need to be greatful my doc has compassion and doesn't run at the first sign of a woman's tears. <g>
I have had a heck of a time finding decent docs. This is the only doc I have right now and I thank God for him. The only drawback is that he is an internist and cardiologist and not a CHF specialist. However it's that attitude that makes me so reluctant to change. As for finding a PCP, that is almost as hard. I don't have the guts that Jon has to question them the way he does. I wish I did. I hope you both feel better and know you are in my prayers. Hugs and prayers, Ginger. email@example.com
Jon's note: Hey Ginger, Try writing down all your questions and concerns. Print them out and hand them to each new doc, and ask them to comment. That way, you just sit and listen and get a feel for whether they mind answering questions or not.
Katherine H, August 2, 2001 - Hi, The two times my CHF specialist upped my Coreg (to 3.25mg BID and then to 6.25mg BID) I got a rash 8 days after the update. The first time it was very minor and went away. This time it has been a nightmare. I'm covered with itchy red little dots that run together and each day it gets worse. My physician's nurse practioner says she has no idea what it is but that it is not meds. She recommended Benadryl, which I won't take because of the stress that can put on my heart. Have any of you ever had anything like this? If it is the Coreg and they have to take me off it, are there other meds that work as well? I am terrified that without Coreg I won't get stabilized. firstname.lastname@example.org
Jon's August 2 reply to Katherine H's August 2, 2001 - Hi Katherine, I am not a doctor and you should ask yours first; However, as far as I know, Benadryl - plain old benadryl without anything added to decongest or whatever - is one of the few truly safe-for-your-heart over the counter meds. It should be fine to take it and it is the perfect thing to take for allergic reactions. If you take benadryl and it stops the rash, Coreg may well be the culprit. Toprol-XL is a reasonable alternative to Coreg for us CHFers. :-) Jon.
Don C's August 2 reply to Cristina L's August 1, 2001 - Hi Christina, You don't say how old you are but since you say you have two small children I will assume you are under 75. <g> I was diagnosed with CHF 3 years ago. I was told the same 5 year nonsense then and if I were to believe it, that would mean I only have 2 years left. I have 2 kids, ages 5 and 9. I'm only 40 years old and I still work 60 hours a week. My EF is around 15% and I'm on a first name basis with the local transplant coordinators. Keep in mind, this is predominately a disease of the elderly. I don't mean to say younger people don't get it. Obviously they do. However, when an elderly person develops CHF it is often at their "end-of-life," thus the low survival prediction. My advice to you is to keep a good attitude about it, control it, don't let it control you and take it a day at a time until you are able to take it a week at a time, then a month at a time, etc,... Soon you won't think about that 5-year nonsense at all. email@example.com
Jon's August 2 reply to Don C's August 2, 2001 - Hi Don, You make a very good point about age. However, I have fought this 5 year statistic for years now and I want to expound a bit for everyone.
The 5 year statistic is based on the Framingham Heart Study, which is considered the holy grail of statistical data on heart disease. However, this study was not focused on heart failure. It focused on heart disease in a general population. It was not a randomized, controlled study. This was an epidemiological study, which is not at all the same thing. The focus at study start was on heart attacks and strokes; and why people get them.
The Framingham Heart Study started in 1948 and is ongoing, as far as I know. In 1993, it reported on mortality for heart failure patients in the study population. That report was about patients from 1948 through 1988. That population is a group of 5,209 people in Framingham, Massachusetts - a group of "regular" people followed for life, medically speaking.
Now, here are some things to keep in mind about that 5 year statistic and the study that spawned it:
For what it is worth, my EF was 13% at diagnosis. I am now in year 7 after diagnosis. I feel pretty bad but I am still productive enough to run this site. <g> Jon. For those who want to verify what I say - and I encourage you to do so - see:
Title: Survival after the onset of congestive heart failure in Framingham Heart Study subjects
Authors: Ho KK, Anderson KM, Kannel WB, Grossman W, Levy D
Source: Circulation 1993 Jul;88(1):107-15
Comment in: Circulation. 1994 Jan;89(1):506-7
Tom L's August 2 reply to Anthony's July 26, 2001 - Hi, I have had similar problems with gas and belching since I was treated for an acute MI about 3 months ago. I was beginning to think it was just me. I had no problems before, so I suspect it's something to do with the drugs.
I am on metoprolol, pravastatin and aspirin. Gas and bloating are indicated as less common side-effects with both metoprolol and pravastatin. Reducing the metoprolol dose seemed to ease things during the day but I still have problems at night. My doctor is also suggesting reducing my pravastatin dose if the gas doesn't improve any more in the next couple of weeks. I hope this helps. ;-) TomL1058@excite.com
Dana Goff's August 2 reply to Bill D's July 26, 2001 - Hi Bill, Thanks very much for your response. I've got to get off this 10 to 12 hours a day diuretics regime. I'm pressing the heart clinic doctors to try other diuretics. Part of my salary is paid in the USA and yes, they are taking out deductions for Social Security. Also, several years ago I took out Long Term Disability insurance. I may be very glad I did. From reading this board, it sounds like I might have a better chance getting financial help from the private insurance than I would from Social Security Disability. I'm interested in hearing about anyone's experience with private insurance. Thanks, Dana Goff. Email@Goff.com
Tracey C, August 2, 2001 - Hi, It was one year ago this week that I was hospitalized for CHF. I can't believe it's already been a year; Amazing. Jon, thank you so much for this wonderful site. I can't say enough about it or how much I appreciate it.
In some ways this disease has been one of the best things to happen to me. This year I've learned to let the little things go, to appreciate those who love me more, to put things into perspective, to take better care of myself and it's made me stronger. I never would have imagined myself arguing with doctors. I've always just accepted their diagnosis and never thought twice. Now my doctor says he's proud of what I've learned over the year, but that I'm a difficult patient. I guess being knowledgable about your illness and questioning things makes you difficult. Oh well.
Jon, I think you mentioned letting go of the anger over being misdiagnosed. It's true. It doesn't do any good, but it's hard to do. This year has also enforced what an absolutely wonderful husband I have. I couldn't ask for more. Sadly, it also means separating yourself from people who don't understand what you're going through. My father has only called me twice this year and when I sent him The Manual he said it sounded quite over dramatized. If only he could see me on a daily basis he'd realize it's not. I consider it his loss. People make excuses for him that "men handle things differently." Maybe, but I don't think that's an excuse.
Finally, I've learned that I love cooking! Who would have thought? We literally used to eat out or order in every night. I look forward to many, many more years. Thanks again for everything, Jon! firstname.lastname@example.org
Rick J's August 2 reply to Katherine H's August 2, 2001 - Hi, After I started Coreg I started getting little red bumps all over my bald head, and a few on my face. They did not itch too badly and now, 6 months after hitting 100mg a day of Coreg, they seem to have gone away. I hope they don't come back! email@example.com
Amelia, August 2, 2001 - Hi everyone, To all who are concerned about life span with CHF, I have never been one to worry too much about long-term problems. I try to plan good things for the future but not when I am going to die. I have CHF. I started out with cardiomyopathy about 30 years ago, badly enough to be in a clinical study group at Georgetown Hospital in Washington, D.C. I was told not to do anything and take bed rest for a year, and that I could drop dead any time because of arrhythmia. I took lots of meds and had lots of blood work done.
Well, I never did stay in bed but was sick enough that I couldn't do much of anything, and here I am 30 years later. Sure, I have been in the hospital too many times to count and have had several heart caths, cardiac arrest, blood clots, and once was in a coma because of hemorrhage. I have lots of friends and relatives with CHF and they are living way beyond the 5 year mark.
My EF went up to 35% and I am on amiodarone, Lasix, Vasotec, and Coumadin, and will be on a beta-blocker next week. I was told by one doctor that there are 3 kinds of cardiac patients: one who totally ignores the doc; one who becomes a cardiac invalid; and the other follows the doctor to improve his health. It's not fun and I do get depressed with the fatigue, memory, and pain to deal with. I know so many of you have more critical and disabling problems than I but the bottom line is that we are all in this together. Thanks to Jon for letting us share and vent, by having this site. I hope this will enlighten a lot of fears regarding your life span. Just live each day and do what you can and leave everything else to God. firstname.lastname@example.org
Cristina L's August 2 reply to Jon's August 2, 2001 - Hi, Thank you so much for helping me understand where the "5 year survival" came from. It has certainly helped me understand. Yes, I have PPCM and CHF. I'm 37 and also work full-time for the CEO/President of a venture capital firm. I go to the gym and take care of kids. If I can handle this, I think I can handle anything. I've had spinal fusion, mitral valve surgery, and am still having difficulties from the surgery 8 months ago. Thanks for everyone's input and for listening.
I have family who don't want to know or understand what its really like to live with this on a daily basis too. I call it ignorance. Luckily I have an incredible husband who cooks all low-sodium meals. Even my 5 year old daughter understands what I have. email@example.com
Mary Beth, August 2, 2001 - Hi, I'm new here. I was found to have CM January 2, 2001, after I thought I had a serious case of bronchitis. At that time my EF was 15% by cath and MUGA scan. As of July of 2001, I am up to 45%. I am glad I have a good PCP who put me in touch with the right specialists.
I am on a lot of medicines: digoxin, Lopressor, Accupril, Lasix and Aldactone (spironolactone). I take Zoloft because I am having a tough time accepting the fact that I am 43 years old and have this condition. I had to quit work so I applied for SSD but I haven't heard from them yet.
I need to ask one question. Has anyone else heard that this condition is hereditary? My oldest brother has CM. He got it at age 43. He is not doing as well as I am. We need to know this because I have a daughter and my brother has 4 kids and 4 grandchildren. Thank you. firstname.lastname@example.org
Jeanette's August 3 reply to Mary Beth's August 2, 2001 - Hi Mary Beth, I have DCM. When diagnosed I had a very enlarged heart and this is hereditary, both my mother and grandmother had an enlarged heart. I am not sure the DCM is, but I definitely know that the enlarged heart is. A virus like the flu caused CM in me. I would have your children and grandchildren checked for an enlarged heart by an echocardiogram for safe measure, then go from there. I wouldn't get all upset until then and don't feel bad about being on Zoloft and having a hard time accepting this. I was diagnosed when I was 31. I am now 34. It takes time. If you ever want to talk, e-mail me anytime. I would be glad to listen. Take care and God bless, Jeanette. email@example.com
Joe S' August 3 reply to Cristina L's August 2, 2001 - Hi, I have to put my two cents in on this 5 year survival thing. I have had a leaking mitral valve now for over 56 years. My mother had heart disease for 20 years. I was given 3 months to live 3 years ago and was given 6 months to live 2 years ago. Last year they told me I no longer have CHF, my arteries are clear and my cholesterol is below average. Follow everything Jon tells you to the tee, especially exercise and diet, and you may live 56 more years. Joe S. firstname.lastname@example.org
Michael, August 3, 2001 - Hi, I have noticed that a lot of you are applying for SSD. I am not applying yet because I have not been out of work long enough to qualify. I would like to make veterans aware of another form of assistance they may be entitled to. It is a non-service related pension that you can apply for right through the VA. I applied and was approved within a couple of months and didn't have to file a lot of repetitive paperwork or go through multiple reviews. email@example.com
Ginger's August 3 reply to Mary Beth's August 2, 2001 - Hi, I think some doctors believe there is a type of cardiomyopathy that is hereditary. It is called familial CM, I think. It was brought up to me just recently. They are doing blood pressure screening for 10th graders here in the public high schools and my 17 year old was found to have high BP. That was my very first symptom when they go back over all my history. So he is in a clinical trial at the University of Miami to see if there is a reason for his high BP, taking the same kind of tests we have: an echo, a stress test, MUGA scan, blood work, and I am not sure what is next. I do not know the results of these tests yet since they were just done.
If you did a search for it on Yahoo you might find something or ask this question at the Cleveland Clinic forum. If anyone has an idea, I would think they might. I often wonder about it myself as I have found out that all the siblings on my father's side of the family died at young ages due to heart problems. I just don't know what kind. There is no one left to ask. I hope maybe the Cleveland Clinic can give you some kind of an answer. If you get one, would you please post it? Thanks, and hugs and prayers, Ginger. firstname.lastname@example.org
Carol O, August 3, 2001 - Hi Jon, I do not have CHF but a very good friend does. I have been reading and learning on this site for almost a year now. This site has taught me so much, not only medical information but whenever someone posts anything about their physical and mental state, I gain more understanding and insight for my friend. It has helped me be more compassionate, more patient, more understanding, less critical, and to be a better, more supportive friend. Thanks for this site! email@example.com
Joshua, August 3, 2001 - Hi Jon, I think you may have missed your calling. I think you'd have made one heck of a doctor! Your capacity for research is truly dazzling! Thanks for a site I visit each day, and always learn something. Incidendally, through the techniques in one of the books I reccomended, I am reducing my cardiomyopathy. firstname.lastname@example.org
Jon's August 3 reply to Joshua's August 3, 2001 - Hi Joshua, Thanks. It seems I have a knack for finding info on specific subjects. However, I really think Jesus leads me straight to everything I need, because it usually comes so easily. As for doctoring, I'll leave that to the doctors. I don't know how they (especially CHF docs) handle the incredible load of new info hitting them daily and still treat patients. Maybe that's why they are so slow to acknowledge new facts - they are in permanent overload. Jon.
Fred D's August 4 reply to Michael's August 3, 2001 - Hi Michael, I would strongly urge you to make application for SSD as soon as possible. It takes awhile and there is a chance that you won't get it the first try. Read what Jon has to say about SSD and follow his instructions. It is true that there is a waiting period before benefits are paid, but the quicker you do the paper work, the quicker that you will get benefits. The letter from your doctor advising that not only can you not do what you were doing, but that you cannot do any type of meaningful work is very important. Once again, contact your Social Security office as soon as possible. Best of luck. email@example.com
Autumn's August 4 reply to Tracey C's August 2, 2001 - Hi, Two years ago I was diagnosed with CHF, which resolved after about 8 months. My pulmonary hypertension is still here along with a host of other health problems. I dearly wish my body was not breaking down in multiple ways. It is not so much the possibility of dying that scares me, though that does concern me too. What scares me is the pain from such things as my back problems, the breathing problems when I lie down, testing procedures, or surgery. However, emotionally and spiritually I feel I have learned so much from my illness too. I think I enjoy life more now than ever. I do so much better at letting go of the little things. Even some seemingly important things aren't worth the energy.
I'm really working on taking care of myself. At times I wish I had started years ago, but spending more than a fleeting moment wishing I'd done different then is a downer so I try to stay focused on the present. I have been labeled as a difficult patient too. I used to be really passive with doctors. Now I ask questions and am assertive. I type my concerns and questions and give it to the doctor. I've had one doctor throw it back to me and tell me he wanted me to voice it all verbally. Often doctors just pick and choose what they want to answer and then I will verbally ask for the other information. My therapist says my doctors are very threatened by a patient who is knowledgable, assertive, and is an active participant in their medical care.
My cardiologist is unwilling to take me off Calan and put me on a newer calcium channel blocker because he says it is not as effective at controlling SVT. He is close to dropping me because I have questioned this issue. Before that, two other cardiologists took me off Calan but gave me no meds at all for my CHF or arrhythmia since I am allergic to ACE inhibitors and cannot take beta-blockers. When I am on Calan I have a lot more problems with respiratory failure and in fact, I landed in the ER a week ago because my breathing wants to stop when I am relaxing for sleep. My cardiologist says Calan has nothing to do with breathing. All the cardiologist at one center have given up and thrown up their hands as to how to treat me. The fact that I'm a "difficult patient" gives them an excuse. I am not giving up. I think there is proper treatment even in my case.
Sometimes I get down but in general I try to concentrate on what I can do, or what I can learn to take care of myself. I used to be pretty angry at these things but now anger is very brief, and I just get more determined to take care of myself, to be assertive, and to enjoy life to the fullest extent possible. I really do not think I would have learned these things if it wasn't for this site. AmberDawn-Blzn@webtv.net
Jon's August 4 reply to Autumn's August 4, 2001 - Hi Autumn, Have you tried hydralazine and isosorbide (Imdur, Isordil) for your blood pressure and preload reduction? How about morphine both for pain reduction and because it is an excellent venodilator, reducing afterload in CHF patients?
To everyone, my doctors like my questioning - they enjoy discussing treatments with me because I am a welcome change from the run of the mill accept-it-all patient. Such doctors do exist and they are worth the search it takes to find them. I vouch for this personally.
Of course, when you become knowledgable about your illness, you have to be careful you don't actually become difficult to treat. If you expect your doc to listen carefully to you every time you speak, then you had better be prepared to listen just as carefully to him every time he opens his mouth. It's a partnership. Jon.
Madelyn J, August 4, 2001 - Hi, I am going through a medication change right now due to what may have been an allergic reaction to the ACE inhibitor Zestril. This may be of interest to any other Zestril takers who experience unexplained throat problems. For three and a half years on Zestril, I experienced only an occasional throat tickle, maybe 4 times a year for a week, for about an hour after taking it. Then a few months ago I started having a feeling of swollen throat with gagging and hoarseness. Because I have other constant mild allergies with nasal congestion, the doctors were sure it was related to that; Plus, I did not have a dry cough or mouth swelling, as was expected for such a reaction to ACE inhibitors.
Now, after a few months of tests and trial and error, a throat specialist has told me it is the Zestril. He even had the same subtle reaction to Zestril when he took it. I stopped taking Zestril and am improving slowly but steadily. The heart docs said that I must give up the Zestril permanently because the allergic reactions can be fatal. I am now on Diovan and hoping I do not lose ground on my successful treatment so far. firstname.lastname@example.org
Jon's note: For those wanting to look this up, this side effect is called angioedema
Brandy's August 4 reply to Joe's August 3, 2001 - Wow Joe, You are truly an inspiration. :-) Brandy. TNBLee@prodigy.net
Jon, August 4, 2001 - Hi everyone, Please don't get accustomed to 3 answers each week on The Doctor's Page. <g> Dr. Silver and I are just trying to get some of the older questions answered. Jon.
Fred D's August 4 reply to Autumn's August 4, 2001 - Hi, My doc is a firm believer in nitro. When I had trouble breathing in bed he prescribed a nitro patch, which solved the problem. I also take Imdur each day and keep my nitro pills on my person at all times. When I run out of breath I take one, and so far it has taken care of my breathing problem. I would be curious to hear what Jon has to say on nitro, and would suggest his advice before discussing it with your doc. Jon knows a lot of stuff, and has been a godsend to me. email@example.com
Ruthie A's August 6 reply to Madelyn J's August 4, 2001 - Hi Madelyn, I am so glad to read your post. I thought angioedema was extremely rare. For me though, it was sudden. I had been taking Cozaar for about 2 years without any problems. Then one morning I woke up feeling as though I had mucous or something stuck in the back of my throat. I stuck my finger in there to dislodge it but there was nothing there. So I got a mirror and looked, only to find that my uvula (the hangy-downy thing in the back of your throat) was extremely swollen and was dragging on the back of my tongue. The area around my uvula was also swollen, narrowing my opening to about half. By the time I got to the doctor, the swelling was beginning to go down since my dosage of Cozaar was wearing off. I was given a prednisone pack and benadryl to combat the reaction but it still took about 5 days for all the symptoms to disappear. I now take Atacand and I am doing well. Fortunately, it was just Cozaar and not all ARBs. have any others had similar experiences? Ruthie A. firstname.lastname@example.org
Katherine H, August 6, 2001 - Hi, Thanks for all the input on Coreg and my rash. My physician had to put me on prednisone to get the rash under control. My CHF specialist cut my Coreg back to 3.125mg with instructions to call him this week. The rash is better, so it appears Coreg is the culprit and we will switch. Thanks again to everyone for calming my fears. I really appreciate it. email@example.com
Victoria, August 6, 2001 - Hi, I have a question please. I have cardiomyopathy which on the last echo had greatly improved but the cardiac doc also saw a mitral regurgitation. He says this is nothing to be concerned about but I am not so sure. Should I be concerned? Thanks. BootsIM@aol.com
Ruth Powell, August 6, 2001 - Hi, I have CHF and diastolic dysfunction. For the past month I've experienced episodes of extreme dizziness, a feeling of fainting and blurring of vision with things turning white. My doctor has said it is an inner ear problem and prescribed an antihistimine, which seems to help at the time of the episodes but this has been going on for more than a month now. I am beginning to wonder if it has something to do with my meds. I am wondering if anyone else has experienced anything along this line? firstname.lastname@example.org
Connie R, August 6, 2001 - Hi everyone, It has been quite awhile since I've posted. I'm now retired on disability and am enjoying a life of leisure. I just wanted to share my wonderful news: I just received my reply from Social Security. It went through the first time. We had a lawyer and everything all in place. It took only 3 months from the time that I applied. Thanks for the help and encouragement. email@example.com
Jon, August 7, 2001 - Hi everybody, Sorry for the delay. I have been all over 4 towns (literally) today looking for a copy of Office 2000 Professional upgrade for my daughter's college pooter. Come to find out, Microsoft has demanded that local pooter and office supply shops send back to MS all copies of earlier Office versions if they want to sell the latest version, called Office XP. I do NOT want anyone in my family using anything XP so I need to spend more time online tonight looking for a copy of what we want to buy. Back later, Jon.
Dorothy P, August 7, 2001 - Hello All, I take allergy shots every 5 days. If you have allergies, the shots make you feel you have a new lease on life. Once my trigeminal neuralgia was diagnosed, my internist prescribed Tegretol. The medication helped immediately but I had a rash on my neck. My internist and allergist conferred. They prescribed a 0.2cc dose of Tegretol every 5 days. I have been able to build up to an oral dose of Tegretol which provides a great deal of pain relief. This info might be helpful to Ruthie, Katherine, Madeline and others. I hope each of you are having good days. May God bless you all and your families, Dorothy. DPowell806@aol.com
Autumn's August 7 reply to Victoria's August 6, 2001 - Hi Victoria, Generally, I don't think they are too concerned about mild regurgitation. I had moderate regurge of my mitral valve and mild regurgitation of my pulmonic and one other valve (I'm blank right now as to which one) when I got CHF. There were also other things going on, all of which caused strain on my heart. Generally, I think it takes quite a bit of regurgitation before they get too concerned. I'm sure they will be following it for you to see if it increases. Meantime I'd be aware but not too concerned. Take care, Autumn. AmberDawn-Blzn@webtv.net
Autumn's August 7 reply to Ruth Powell's August 6, 2001 - Hi Ruth, I have had many episodes of dizziness and feeling like I am going to pass out. Several doctors have told me it is an inner ear problem and I need to use my prescription nasal spray to clear up problems in my eustachion tube. I never think to use my spray for that because I was initially started on the spray for post nasal drip and I don't have that any more. When I do use it, if I start having the dizzy spells, they clear up. I guess my eustachion tube is small and so I have more problems. Give your antihistamine a good try. I hope it clears up your problem too, Autumn. AmberDawn-Blzn@webtv.net
Beth C's August 7 reply to Madelyn J's August 4, 2001 - Hi Madelyn and Ruthie, I have not posted for awhile but I look at this site daily. Funny that you two should mention the ACE inhibitor/ARB side effects. My husband Bill has been on 10mg Altace daily since 4/3/01. He had no problem for several months. Then within the past 4 to 6 weeks he noticed that he had a lump in his throat and was experiencing difficulty swallowing. This came on so gradually we didn't even think of the Altace. In fact, he was planning to see an ear, nose and throat specialist.
Well, this past weekend it got so bad that he could not sleep one night. By morning (when the Altace was wearing off) he felt much better and so again he took the medication. This day by late afternoon the effect was so bad that I came close to taking him to the emergency ward of a local hospital. Instead I gave him benadryl and he went to sleep for 12 hours. I kept checking to make sure he was breathing. The next morning we called the cardiologist, who suggested he skip the Altace for several days. In 2 days the lump in his throat was completely gone. In addition, I work with a woman whose husband was on Zestril for 12 years before developing a severe reaction. So, I do not believe these side effects are as rare as we may be led to believe. firstname.lastname@example.org
Tracey C, August 7, 2001 - Hi everyone, Does anyone in southern California have a reliable place to purchase pork? I've avoided buying it at Ralph's because the label says they inject sodium, so I got it from a meat market and they swore they don't inject sodium but after eating it I woke up this morning 5 pounds heavier. I can breathe fine and have no cough but the scary part is my face - it really puffed up. I really love pork chops but am afraid to buy them now. Any suggestions? Thanks! email@example.com
Mary Lou's August 7 reply to Ruth Powell's August 6, 2001 - Hi Ruth, If you and I had collaborated, we couldn't have come up with a more identical story. <g> I have had the exact same thing going on in my life for about a month too. In fact, I have an appointment with my ophthalmologist tomorrow afternoon. My vision suddenly blurs to such an extent that it is difficult to see the letters clearly enough to read or even see my computer screen or road signs (my husband does the driving) with or without my reading glasses. This lasts for about two hours at a time and has happened 3 times so far, with the last episode being just last night. It (loss of vision) has frightened me to such an extent that feeling dizzy and faint have taken a back burner until after I see my ophthalmologist. Hopefully I'll have an answer tomorrow and will see where I go from there. I'm going to mention your inner problem to him too.
Jon, this is one of the many benefits we derive from your site. Every time I feel alone with a problem I find that another CHFer who is/was in the same situation. God bless you Jon, for the time, effort and above all caring and love you have put right at our fingertips. Jon's Place has saved my sanity on numerous occasions. I love Jesus too, Mary Lou. MLBinks@aol.com
Jon's note: That's one benefit I also get from this site ;-)
Ruth Powell's August 8 reply to Mary Lou's August 7, 2001 - Hi Mary Lou, Thanks for your reply! I guess it's just good to know we are not alone in different things which seem to keep developing. I will look forward to learning what the doctor tells you at your appointment. I'm thinking of going to an ear specialist to see what he has to say.
Jon, I ditto the comments made earlier by Mary Lou regarding the value of this site. I know it has really helped me to learn more about my condition and to realize that many people are in the same boat, but we have a Lord who truly cares about our achy hearts! firstname.lastname@example.org
Jon's note: Thank you. I have put a lot of hard work into this site - but - I would never have started it or kept at it without Jesus, nor would the site be of value without you, the readers and contributors!
Michele B, August 8, 2001 - Hi, I am looking for a CHF specialist in my area. I live in Orange County, in southern California. Areas near me are Huntington Beach, Fountain Valley, Los Alamitos, Orange, Fullerton, Newport Beach, and Costa Mesa. I use Hoag Hospital in Newport Beach but they do not have any list of CHF specialists. Any help would be greatly appreciated. Thank you, Michele. email@example.com
Claudia S, August 8, 2001 - Hi, Is there any recent data on whether Toprol-XL (metoprolol extended release) is better than Coreg? A friend's daughter is a drug representative for Toprol XL, and she told her mother there were new reports out that said how well Toprol XL is doing for CHF patients. I was wondering if anyone saw any information about this? I am asking because I have a friend from this board that is on Toprol XL and I am on Coreg, and her EF has improved 10+ points better than mine did this last year. We are pretty similar in all other medications except beta-blockers. I hope everyone here is having some good days even with all these high temperatures. God bless. CMSchm@aol.com
Jon's note: There is some info here. The COMET trial is comparing the 2 drugs now
Lisa E, August 8, 2001 - Hi, I have not posted in awhile but I do try to keep up with reading the posts. I was wondering if you or anyone out there knows if there is a supplemental nutritional drink for patients with CHF or cardiomyopathy. I have picked up a few in the store like Ensure or Boost but they have a lot of sodium. Since being diagnosed with CM and CHF I really have lost weight and need to gain it back. I have always been thin, but not this thin. I do know they have certain drinks for diabetics and patients with lung problems, like glucerna and pulmocare. Well, take care and thanks for this wonderful site. God bless everyone, Lisa Elliott. Johnlisa@the-i.net
Janet Harris' August 8 reply to Ruth Powell's August 6, 2001 - Hi, While I don't have your degree of dizziness, I have suffered from what my PCP calls "inner ear problems". I have episodes of getting dizzy while doing things like rolling over in bed. Also, my ear feels like it's always plugged, like when you have a cold. I'm on Coreg, Losartan and Lasix as needed. It will be interesting to see if anyone else has this too.
Jon, I have to ditto in that I really appreciate your site too. I recently had another Coreg increase and felt so lousy. I started reading others' posts about Coreg increases and fatigue, and knew that I just had to push through this. Thank you! firstname.lastname@example.org
Janet Harris' August 8 reply to Claudia S' August 8, 2001 - Hi Claudia, My sister is also a drug representative who handles Toprol-XL. She has also hyped this drug and told me how great it's done but I haven't seen the research myself. If I get any inside information from her, I'll be sure to post. However, also consider the source - she works for the company who is trying to sell the drug. ;-) I asked my cardiologist about it and he said he doesn't want to jump on the band wagon of every new drug. Coreg has worked well for me but the increases have been difficult. I'm only up to 20mg twice a day in a year. I think we're trying to push it to 25mg BID. email@example.com>
Dorothy P, August 8, 2001 - Hello friends, I really did not explain the reason I sent my August 7 post regarding Tegretol. I wanted you all to know that it may be possible to desensitize a reaction to an oral medication by taking small injections of the medication. Thanks, Dorothy. DPowell806@aol.com
Tracey C's August 8 reply to Michele B's August 8, 2001 - Hi Michele, I go to Dr. Michael Miyamoto, (949) 364-3570. He's in Mission Viejo. I don't think he's part of Hoag, but Mission Hospital is a great hospital. I think you can actually find info on him on this site under CHF Specialists. He has a pretty extensive background. Good luck! Tracey. firstname.lastname@example.org
Sally M's August 8 reply to Beth C's August 7, 2001 - Hi Beth, I had a similar experience as your husband on 10mg Altace. I recently relocated to a new area of the country and have had to get a new doctor. I have had 4 MIs, have a stent and also CHF. At the present time I have applied for my Social Security Disability and have been turned down on the first go around. I do have a lawyer who has been working with me since the beginning.
I also have severe degenerative joint desease. The new doctor I went to didn't like my blood pressure. I explained to him that I had what they called white coat syndrome. I also tried to explain to him that my system will intensify certain medications. In 1999 I went to an ER in the midst of a heart attack. The doctors over-medicated me and put me into a massive heart attack. They told my son I was not going to survive. I fooled them all.
Now back to Altace. This new doctor decided I needed a third blood pressure medication. I am already on ziac and Norvasc. He put me on Altace. Within a couple of days my throat started to bother me. Within a week I could hardly swallow. My throat was swollen and my esophagus felt like I had been burned. My throat was the sorest I have had in years. I was taking my blood pressure every day and it was all over the wall. When I took my pressure one day and my heart rate was 36 I decided that was enough of that medication. I stopped it two weeks ago and my pressure has been running in the 120s over 70s, and my heart rate in the low to mid 50s. That is really great for me.
I go back to this doctor next Monday. He probably won't be happy but within a couple of days off Altace my throat was back to normal. I hope your husband continues to do well. Jon, I read your web site almost daily and really want to thank you for all you do for us out here. You are in my prayers. Thank you again, Sally. S_Meyers44@msn.com
Vicki, August 8, 2001 - Thank you Jon, for this wonderful site. May God bless you richly for taking the time to bless so many people. I was diagnosed with cardiomyopathy in February and this site has been a constant source of good information and encouragement for me. Snevetsii@aol.com
Jon, August 8, 2001 - Hi everyone, Thanks to everyone for their kind words about me running the site. It certainly helps motivate me but encourages my wife even more. She gives up a lot of husband time due to this site and she sees to it that we can budget money each month to pay for the server fees and so on. She has her own web site (that she rarely has time to update) at Linda's Place. If anyone ever wants to say thank you, it would be even better directed her way.
Hey Billdog! Did you notice that in one of Doc Silver's last answers, he flat out confirms your theory that EF changes from moment to moment? It's the first time I've sen a CHF doc say so straight out like that. You were right all along! ;-) Jon.
Jack D's August 8 reply to Lisa E's August 8, 2001 - Hi Lisa, When my grandmother was real thin (like 75 pounds) the doctor had her on Ensure but it didn't put the weight on so he said let her eat all the candy she wants. So I imagine Hershey bars and all those goodies that don't have sodium (like unsalted nuts) would help you out. It's just when you put the chocolate in the milk that you get the cholesterol. email@example.com
June, August 9, 2001 - Hi, My question is about my EF. It was 17%, then went to 59%, and is now is down to 30%. Is this normal - going up and down - or is it better to keep it steady? What can be done to improve my EF, if anything? I'm a bit concerned and the doc is supposed to call me tonight but with the doc so overworked I just need some reassuring for now. Thanks for this site, June. firstname.lastname@example.org
Brandy, August 9, 2001 - Hi, Although my EF is 50%, I feel awful. I guess I should join the club. ;-) Is it a normal CHF thing to be tired all day long and feel sweaty - a lot? I have my air conditioner set on 75 degrees, which is where I have always set it. Granted it is the middle of summer but no one else in the house is dripping sweat the way I am. I am not overweight (5'3" 113 lbs) and am not retaining a lot of fluid so I don't know if this is heart related, or heat related. Any input appreciated, Brand. TNBLee@prodigy.net
Lee R's August 9 reply to Jon's August 8, 2001 - Hi, My doctor also told me that EF changes from moment to moment and that even eating a meal can change it. I am a little nervous about some folks here (particularly MaryLou) who are having dizziness, faintness and vision problems (blurry). It may very well be inner ear or eye problems but I would not stop there. Stroke (TIAs) sometimes has the same effect on the body and so do arrhythmias. So, please let the CHF doctor know. Bestest to all, Lee. LeeJRoush@msn.com
June's August 9 reply to Brandy's August 9, 2001 - Hi Brandy, I am suffering so much this summer from sweats and I'm in the same age range and weight as you. It makes me wonder if it's not the medications. I have never sweated to the degree that I am now. My husband thinks I'm losing it because I'm forever changing. It's my first summer with cardiomyopathy. Maybe someone else has experienced this side. If we stay warm like this during the winter, think of the heating bill that we will save. ;-) June. email@example.com
Janet, August 9, 2001 - Hi, I haven't been here for quite some time, but am still around. It was so great to come to this site and see that you were still here and continuing to improve the site. I can't tell you what a difference it has made in my life. I was diagnosed with adriamycin-induced cardiomypathy in June of 1997 and the way the doctors were talking, I shouldn't be here today. Thanks to all the good plain-talking information on this site I honestly believe it is what has kept me alive this long.
I skimmed through the posts and see so many of the same issues. It's too bad some things never change, like bad docs and SSD. I did notice a post where you mentioned angioedema. I had a reaction to my Zestril (angioedema) in January and nearly died from it. Thanks to my quick thinking primary doc I recovered quite quickly. Now I'm on Avapro and really like it. I haven't been to my cardio doc for quite some time but will go this fall for a full checkup. My husband has had 2 brain bleeds following carotid artery surgery, so that has kept me chasing in a different direction.
I just wanted to thank you again for this amazing site and all the good it has done for so many people. You are one of Christ's disciples, I'm sure of it. Janet, EF up to 25% from 10%. firstname.lastname@example.org
Jon's note: You're welcome. I am very glad it has helped
Joanie, August 9, 2001 - Hi, This is in regard to the problems with Altace. I took it for 2 months and then acquired a terrible cough, as though something was grabbing at my throat. When It started to happen 5 or 6 times a day, and I couldn't even sit through church without running out because of the terrible hacking, I quit taking it and after a few days it stopped completely. I need to find another ACE inhibitor that I can tolerate or take an ARB like Cozaar. I'll be seeing my doctor soon, Joan. MMeeks5821@aol.com
Mary Lou L's August 9 reply to Ruth Powell's August 8, 2001 - Hi Ruth, Another mix-up on my part - my appointment was today, not Wednesday as I thought. It's a good thing I called to verify the time; I had that right but just got the date wrong. That's not the first time I've done that either. <g> Following a thorough eye exam to rule out retinal detachment or eye disease, my ophthalmologist said that the condition could be ocular migraine. Ocular migraines are visual disturbances in which visual images look gray or have a wavy appearance and can include temporary loss of vision. As people age, it becomes more common to experience ocular migraines without headache symptoms. Dizziness, nausea or feeling faint can be present. If or when I have another bout (and it's during office hours <g>) he wants me to go right to his office so he can examine my eyes during an actual episode. If symptoms worsen, I'm to call for another appointment. I am to make an appointment to see my internist for any tests he may want to have done. So kiddo, it looks like that is where I stand for the time being. I'll make an appointment with my internist tomorrow and if he has a different idea I'll be sure to let you know. Like Jon, I too love Jesus, Mary Lou. MLBinks@aol.com
Pat M, August 9, 2001 - Hello everybody, I have been reading all your posts including The Archives. Earlier this summer, after having trouble breathing, then wheezing, I would get up in the morning and then after minimal housework would be ready to go back and sleep 2 to 3 hours more. I had an echo in June and was diagnosed with HHD, diastolic dysfunction and an EF of 55%. I have thickening in my heart. I am on 20mg Lotensin 20mg BID day, 50mg metoprolol BID, and 40mg Lasix. My blood pressure was still 174 over 100 so my doctor put me on 20mg hydralazine TID and isorbide dinitrate TID as well. I also take 40mg Prozac.
I have been in denial since then. I have been reading all of your posts and have learned that the 5 year survival number is bunk. I have a strong faith in Jesus Christ and I know only He knows the time. My question is, why did these symptoms - SOB, weakness, and fatigue - come out of nowhere? I don't discuss it much with my family because they worry. The doctor will test my blood every 3 months. I am feeling so much better than I was a month ago, but he told me it doesn't go away. I appreciate everyone sharing their stories. I feel that I can face it now. Peace and love to you all, Pat M. email@example.com
Amelia's August 10 reply to Brandy's August 9, 2001 - Hi Brandy and June, My brother in law has class 4 CHF and he went through about a year of perspiration so bad that he had to have extra tee shirts to change into where ever he went because his shirt would be soaked. The doctor told him it was from his heart problem. He had a bypass about 11 years ago and now he is suffering with CHF. He has lived 2 years more then the doctors expected. He is 67 and has lost a lot of weight.
My friend's daughter has all the symptoms that are the start of CHF according to all I have read here on your site. She was told she has bronchitis. Now she gets short of breath, is tired all the time, has chest pain on the treadmill, and a dry cough.
She went to 2 doctors; the first never called to inform her of test results so she went to another cardiologist, who repeated an echo, treadmill with contrast dye, x-ray and blood work. He told her she was fine except for a murmer, which was nothing to worry about. I really am worried about her since that is how I started out. I would appreciate anything you can tell me as what to do for her. Wishing all the best. firstname.lastname@example.org
Ben B, August 10, 2001 - Hi, I was really interested to read the article Jon sent out on obesity cardiomyopathy. I have long suspected from the number of people, including myself, who were very overweight and got "unknown" cardiomyopathy that the obesity may have been the main cause. Although I have lost significant weight since my diagnosis, I am still too fat and this has motivated me to lose weight rather than accept that my weight and heart problems were unrelated. My doctor has consistently told me to lose weight and that it was just as important, if not more so, than any other thing I do. Some doctors are reluctant to tell patients to lose it and some just give up. I'm glad mine doesn't. email@example.com
Joe S' August 10 reply to Brandy's August 9, 2001 - Hi Brandy, When I was at my worst 3 to 10 years ago, I had to take 2 towels to bed and 2 when I sat down on the couch. I even lost a job because of this. My solution, besides diet and exercising, was to move to a much drier climate. I still sweat a little but nowhere near as much as I used to. I also think 75 degrees is too warm - I keep it at 68. Good luck, Joe S. firstname.lastname@example.org
Bill B, August 10, 2001 - Hi Jon, I hope you are feeling better. I got with my cardio doc and he approved me for some tests not heart-related to see if the symptoms could be improved by treating something else that may be wrong. Yesterday I had an EGD and colonoscopy. I have Barret's Esophagus, which they treated yesterday by dilation. The scar tissue is from
acid reflux and I am taking high dose Zantac and Prevacid now. They also found gall bladder disease and I am being scheduled for laparoscopic surgery for that. Have you had any of this done or do you know of anyone else who has and started feeling better? Any advice? God bless, Bill B. email@example.com
Jon's note: I'm the wrong person to ask about gall bladder removal. See my bio. <lol>
Alexis' August 11 reply to Mary Lou L's August 9, 2001 - Hi, I was diagnosed with CHF in April. I had several episodes of ocular migraine in the 2 weeks before my first acute CHF episode that put me in the hospital for a week. I had several more ocular migraines while I was in the hospital. I continued to have them after I was out of the hospital and starting to adjust to all my CHF meds - Coreg, furosemide, Zestril, Lipitor, and Diovan.
During the first few weeks out of the hospital I would have 2 or 3 episodes a day. As I adjusted to the meds, got into regular exercise and a good low sodium, low cholesterol diet, the ocular migraines started to go away. It's been a couple of months since the last one. The first cardiologist I had looked at me like I was crazy when I tryed to describe the visual affects of my "migraine without a headache" and the last one just said I should see a neurologist if they didn't go away.
Now that several others here have mentioned that they too have had this problem, I wonder if it could have anything to do with our CHF! Asmth@aol.com
Jon's note: I had migraines, which disappeared almost completely with CHF onset. Most people lose their migraines after age 50 or so. I don't doubt that some of our visual problems are unrecognized meds side effects. I have them too but mine are entirely different from my previous classic migraine visual disturbances!
Amelia, August 11, 2001 - Hi Jon, I just came from my CHF doctor. He has been seeing me every 2 weeks now for 3 months, which delights me to still have to go in often for Coumadin level. He has increased my Vasotec from 10mg daily to 20mg. I asked why and he said ACE inhibitors are the best to keep the heart strong and he may still increase the dose later. Does that mean when he examined me that he could detect the heart's strength without an echo? I am also on 400mg amiodarone, Coumadin, and 20mg furosemide. I am still pending an EPS.
I told him how anxious I have been for the first time during all these years of cardiomyopathy but more so because of the strokes. He said that was normal and I was to do anything I felt like within reason and to go on with my life in any way I can, since life is fraigle and we all have fears of things like car accidents, etc,. He will give me medication if I get worse but would like not to do so at this time. That was fine with me since I always feel better talking to him. Best to all, and have a great weekend. firstname.lastname@example.org
Jon's August 11 reply to Amelia's August 11, 2001 - Hi Amelia, While he cannot objectively measure your heart's strength with a physical exam, he can get a good idea of overall heart function from a proper exam. Too many doctors do not perform a proper physical exam at each visit - a very valuable tool for an experienced CHF doctor.
What he is talking about with ACE inhibitors should comfort you. He is relying on a good overall knowledge of CHF drug trials. Obviously he keeps up to date on them. A strong trend has been seen (with a few exceptions) showing that a higher dose of ACE inhibitor is much better than a "standard" dose for CHFers. You can read more about it at my ACE inhibitor page. There is more on CHF drug doses at my Target Dose page in the CHF FAQ. Jon.
Bev T's August 11 reply to Ruth Powell's August 8, 2001 - Hi Ruth, I'm not sure what has caused your problem, but I had the same symptoms of dizziness, feeling of fainting and a white light that was blinding. I complained to my doctors and they all acted as though I was nuts. On my own, I checked BP, blood sugars, etc,..., for 2 weeks and realized that it was low BP caused from dehydration. As soon as I got rehydrated and asked to be taken off one of my BP meds. (I took Coreg, Vasotec and Cozaar), I haven't had a problem since. After I made this discovery and had bloodwork done, the docs concurred with me. They said the dehydration and keeping my BP so low - sometimes as low as 70/45 - constricted my blood vessels too much and caused the feeling of fainting and white light. Good luck, Bev. Mtnmama008@aol.comJon.
Joanne R's August 11 reply to Ruth P's August 6, 2001 - Hi Ruth, Your post was the first I saw regarding dizziness and blurry visual problems. The responses you got are cheering me up and I'm making better use of good old benadryl. Also, I have had troublesome "light flashes" and "floaters" on 2 occassions in the last 1 1/2 years and an episode of double vision a week or two before I was hospitalized with CHF. If this persists, I'm going to check out the ocular maigraines mentioned in the replies. I've never had the headaches but my mom did. If I learn anything interesting I will pass it on. email@example.com
George, August 11, 2001 - Hi, I was disappointed with the visit to my cardiologist yesterday because I thought he would raise my Coreg dose from 6.25mg BID to 12.5mg BID and he didn't because my resting blood pressure was 84/60. Will I get enough of a benefit from Coreg at this dose and what are the dangers of the low blood pressure? I am currently not experiencing any dizziness or lightheadedness at all. firstname.lastname@example.org
Erceal's August 11 reply to Amber's August 4, 2001 - Hi, I have CM, with an EF of 25% with Coreg; It was 15%. My O2 sat is 86% at night. I started sleeping with oxygen and now rest better. During the day my O2 is 98%. The problem is Coreg, which slows my heart down, and my CHF condition. I get extremely dizzy when getting up. Strange what I have read today, in that my doctor first said it was my inner ear. He cut my Mavik by half and it made a significant difference. I go to a heart failure clinic twice a week and hope to move up to a maximum of 25mg Coreg BID soon. Rigt now, I take 18.75mg BID.
I could go on forever about how much I like the CHF clinic and the nurses there. I have read exstensively and recommend 2 paperback books: "Practical Approaches to the Treatment of HF" by Roger Miller Jr and James Young. This is a little techie but one can get through it. The other book is much easier, by Springhouse: "HF - An Incredibly Easy MiniGuide." They have helped me extensively.
I have had the same problems you have with doctors and understanding what they are telling me, more importantly, what I need to know. Also, I am contemplating filing for Long Term Disablity and SSD. Anyone that has been through the process and can provide any input, I would love to hear from you. Please feel free to e-mail me. I am a Christian and very spiritual about my condition and would like to help others and have them help me. God bless, Erceal. EDoty1@coserv.net
Erceal's August 11 reply to George's August 11, 2001 - Hi, I am up to 18.75mg Coreg BID. My BP was as low as yours only when I was lying down. From what I have studied and been told it can take up to 6 months to adjust to Coreg and everyone is different. Just be patient with it. I go twice a wek to a heart failure clinic. It has been over 6 weeks since they raised my dose - same reason. The doctor cut my Mavik by 50% and that helped with my dizziness, which was caused by drop in BP. My nurses read my BP sitting, then standing. If there is big swing they will not increase my dose. My heart rate is 42 to 50 when at rest, lying down. Do you have a BP cup? You can measure and record your BP. Also, do you weigh yourself to see if you are holding fluid?
Keep in mind that everyone is different and you may not be able to tolerate it and might try something else, or just need to give it some more time. Don't hold back asking questions. Try the books I suggested in my last post. I cannot encourage you enough to educate yourself and ask questions. EDoty1@coserv.net
Tony T's August 11 reply to Joanne R's August 11, 2001 - Hi Joanne, Your comment about light flashes brought to mind my self-diagnosed vitreous separation. I sometimes get strings of flashing lights, frequently resembling a large C, that slowly float across the vision in both of my eyes. During an episode, it is very hard to focus my eyes. Usually, within 30 minutes, the thin, light string slowly floats away. I've read that the vitreous humor of the eye tends to shrink with age and eventually separates from the retina. This is known as a posterior vitreous separation. The condition is extremely common after age 80, and can occur at an earlier age in highly nearsighted individuals. I am nearsighted. Perhaps the CHF, a-fib, hypertension, multiple chemical sensitivities, and the meds have caused mine to come early, while in my fifties
For those taking calcium channel blockers, I've had some interesting experiences with verapamil. I can't have any dairy products within 2 1/2 hours of my verapamil dose. Thusly, I can't take the slow release version of the drug. I also must separate my Lanoxin dose from my verapamil dose by at least 2 hours. Many other heart meds have conflicted with my taking verapamil, and I have had to stop taking the other meds. The normal result of a conflict causes me to have harsh, thumping heart beats that last from several hours to several days and leave me worn out and weak. I am pretty sure that these thumps are ectopic supra-ventricular or ectopic ventricular beats. I have now isolated many chemicals, drugs, allergic reactions, and combinations of events and factors that cause these harsh, uncomfortable and debilitating ectopic episodes, and have significantly reduced the episodes. Keeping a daily log with my blood pressure readings has been invaluable.
I take my blood pressure an average of 9 times per day. I now have 9600 readings, and corresponding daily entries in my log, representing 3 years of trying to get my blood pressure and arrhythmias under control. Two recent changes have had a significant impact on my blood pressure. First, I lowered my daily verapamil dose from 320mg to 280mg. That resulted in lower side effects and lower blood pressure.
The second change came after I read a "Multiple Chemical Sensitivities" or MCS article about the unhealthy air in buildings and homes that are not ventilated properly. I've always kept my windows closed because of my allergies and asthma. Well, I started opening up my windows during a breezy time when the pollen count was low and I've experienced a significant lowering of my blood pressure during the last 2 months. It will be interesting to see what happens over the next year. Best of health to everybody, Tony. email@example.com
Tracey C, August 11, 2001 - Hi everyone, Regarding occular migraines, I was at the opthamologist for that same problem the day I first went into CHF. I'd had 2 episodes the prior week; no pain, just nauseau and wavy lines. We had purchased a new computer so the doctor thought it was eye strain. I'd never had one before in my life and worked with a computer daily. I'd never heard of the corrolation before. Have a great weekend, everyone! firstname.lastname@example.org
Bill D's August 11 reply to Joanne R's August 11, 2001 - Hi Joanne, You get "floaters" because the eye fluid gets specks in it. The "flashes" are because eye fluid is sticking to your retina. After awhile, your brain will ignore it. You might go to an opthamology person to confirm it, Bill D. email@example.com
Davida's August 11 reply to George's August 11, 2001 - Hi George, My husband experienced low blood pressure on Coreg. The highest does he received was 12.5mg. His blood pressure got lower than yours. He had dizzy spells unexpectedly sometimes while walking or even sitting. His heart rate also got very low - 55 or under. Coreg turned out to be a disaster for us, from one week after starting at the lowest dose to 4 months later when he experienced seizure-like activity. They stopped the Coreg cold turkey in the hospital, which I don't agree with. How can you titrate up over weeks or months and stop cold turkey? I think stopping cold turkey caused the arrhythmia that forced him to go on amiodarone. In any case, your doctor is wise to be concerned. I am sure he has other patients and may be cautious based on someone else's past experience. Coreg is an anti-hypertension medicine and it will lower blood pressure. Cavalier_1@msn.com
Elton, August 11, 2001 - Hi, I've read some posts regarding Coreg, including many from The Archives. I've read the "informative" type articles you have linked to your site about Coreg. I was diagnosed with CHF 5 years ago but wasn't told plainly the seriousness of my condition until 3 years ago, when I had to be hospitalized a second time. I have an EF of 16%. It's really not changed since the first diagnosis. I feel good, better this last year than the year before. I've not been on a beta-blocker but I've been told I need to be. What I've read tells me that this is probably best for me but what I read also makes me concerned that I may in fact feel worse once I start taking Coreg. Is this the case?
Also, my heart specialist just wrote the prescription and told me he'd see me in 12 months. What I've read seems to indicate some medical professional needs to be monitoring me at least every couple of weeks as the dosage is slightly increased. What can I expect, really, and do I need to speak with this doctor again before I actually begin taking Coreg? Will I in fact feel worse? Currently I take 20mg lotensin twice a day, 20mg Ismo 3 times a day, 40mg Lasix twice a day, one aspirin daily, 0.25mg digoxin a day, 300mg allopurinol daily, and 5mg hytrim daily. I've been taking this dosage 5 years, pretty much. firstname.lastname@example.org
Jon's note: Frankly, I would change doctors before starting Coreg. It is unthinkable to give someone with your EF a prescription for Coreg and not monitor you at all for a year. You should never take the first dose or a new dose outside a clinical setting!
Scott S, August 13, 2001 - Hi, I am scheduled for an angiogram (cath) on 8/21 and have requested (strongly) a transradial (wrist) approach as opposed to the leg. Does anyone have any experience with the transradial approach? How rapid was your recovery? email@example.com
Erceal's August 13 reply to Elton's August 11, 2001 - Hi, Elton, I go to my CHF clinic every two weeks. There they monitior my blood chemistry, BP, weight, do an EKG, talk to me about how I feel and decide if I should increase Coreg dose. Lasix can deplete your potassium and magnesium and other needed chemicals in your body, dehydrate you, and generally damage other organs. I see my cardiologist every quarter. I can call the clinic any time they are open and they will discuss an issue or question with me. You may want to think about finding a CHF specialist.
As low as your EF is, you may need to be tested to make sure you are getting enough oxygen at night. That affects your sleep and organs because if you are not getting enough oxygen you may retain toxins in the blood, and you may have fluid retention. Weigh yourself every morning at the same time after emptying your bladder. If my weight fluctuates by a few pounds, I call my CHF clinic. If it is over a 4 or 5 pound gain, I go to the emergency room. See if you can find the books I recommended in my earlier posts. They will help with the treatment protocol. Good luck and I will say a special prayer for you. EDoty1@coserv.net
Mary Lou L's August 13 reply to Alexis' August 9, 2001 - Hi, As Jon said in his note at the end of Alexis' message about post-CHF visual disturbances being different than classic migraine, I agree. I have been a classic migraineur for over 40 years and have experienced the sparkling lights, colored lines, zigzags and nausea that accompany them. Ocular migraine is like a classic migraine without a headache or bright colors, just gray and white; In my case at least, extremely blurred vision, dizziness and feeling faint occur during an ocular migraine event. I'll update when I have more information. Like Jon, I love Jesus, Mary Lou. MLBINKS@AOL.COM
Janet Harris, August 13, 2001 - Hi, Put me in the "me too" category for visual disturbances. It sounds like this may be part of our condition with so many people experiencing it. My cardiomyopathy was misdiagnosed for almost a year. During this time, I was having visual issues. Usually they seemed like blotches missing out of my field of vision. It was really strange. I was sent to a neurologist and he said I just had "migraine auras." I did have a history of migraines but was not experiencing headaches during the visual disturbances. This continued much of the year I was misdiagnosed. I haven't had the problem since I've been on meds. firstname.lastname@example.org
Amelia, August 13, 2001 - Hi everyone, I just want to add my experience with all the heart meds. First of all, they do have lots of bad and sometimes dangerous side effects but one has to weigh the risks until the doctor finds the right one for you. They can cause dizziness and blurred vision. I'm not sure of vitreous separation, which I had a few years ago in my 50s. I thought I was having retina detachment but my ophthalmologist said it was vitreous separation, which happens to many. He didn't think it was from meds. I realize not all CHF patients have the same problems caused from heart failure and that some meds are not for everyone but I have been on a lot of different meds. Procainamide caused me to have lupus, Inderal was making things worse, verapamil and Norpace can seriously reduce blood pressure and can exacerbate heart failure. I was on Norpace for a year and went into heart failure badly enough for the doctors to realize I indeed have CHF and not just arrhythmia. The CHF specialist (a new doctor) said I have to go off Norpace and replaced it with amiodarone, which I have done very well with. I was told never to take verapamil or Norpace as they were not keeping my heart rhythm under control and would cause me not to improve with heart failure.
Thanks for all the help I get from these posts and to Jon for all his effort, love and concern to bring all our sick hearts together. Wishing the best to all. email@example.com
George's August 13 reply to Erceal's August 11, 2001 - Hi Erceal, Thank you for your reply. I tried to get my doctor to go to 18mg Coreg and I think he thought I was being too pushy or maybe crazy so I'll be patient as everyone suggests and keep track of my BP at home and hope they can raise my Coreg. I have a pacemaker/defibrillator. My problem comes from cardiac sarcoidosis. My pulse does not go below 60 ever. It is electronically controlled. My last day at work was June 15, 2001. I am pursuing SSD. All of my doctors have received the paperwork from SSA as of last week. From what my cardiologist tells me, the letter he wrote will get me through the process on the first try but from what I've heard it can take up to 2 years. My wife and I are keeping our fingers crossed that it's sooner that later. I would be happy to keep you posted on the progress of my disability award, George. firstname.lastname@example.org
Robert H, August 13, 2001 - Hi Jon, I was taking MyoVive for almost 6 months but had to stop in January since they discontinued it last December. They said it would be back in the spring. You said a couple of months ago that you understood it would be back in mid-July. I thought it was helping me and I have felt a decline in the way I feel over the last few months. Will it be back at all? Can you find out? In the meantime, I'm running around buying various vitamins and minerals here and there. Thanks Jon, for this wonderful site. I hope you can get an answer. email@example.com
Jon's August 13 reply to Robert H's August 13, 2001 - Hi Robert, I wish I could say for sure but I have no inside sources anymore on this one. The company is not any good at public relations on MyoVive - not stating any definite information for anyone, as far as I know. I'm sorry. I updated the Myovive page in June of this year at which time Nutricia said it would be 2002 before Myovive would be back on the market. I did put an alternative supplement possibility on the MyoVive page but have not tried it myself. Jon.
Christy W's August 13 reply to George's August 11, 2001 - Hiya George, Jon, and all, In my case it took 7 months to titrate me up to 12.5mg Coreg BID and 30mg of Prinivil BID. My blood pressure is maintained at an average 100/60 but it can frequently temporarily go down much lower and occasionally higher.
If you can, separate taking your beta-blocker from your ACE inhibitor by at least 2 hours. This can reduce the impact to your system somewhat. Also, the docs modified my ACE dosage to 10mg in the morning and 20mg in the evening. This helped reduce my dizziness during the day time while I'm more active. Don't give up hope on increasing the Coreg. It can take a long time for your body to adjust to the beta-blocker, but once it adjusts they may consider increasing the dose. I used to moan a lot when he wanted to titrate up. I'd just start feeling better and it's back to watching bad daytime TV! However, I believe that the benefits of taking Coreg outweigh the side effects of the titration and is worth every moan. Eventually the side effects have ebbed sufficiently so I can have a pretty "normal" day, whatever normal is anymore. <g> firstname.lastname@example.org
Tony T's August 13 reply to Amelia's August 13, 2001 - Hi Amelia, There seems to be quite a bit of controversy about verapamil, especially when it is used for CHF patients. I was only introduced to verapamil after 15 years of having CHF. I continued to get worse and was experiencing increased symptoms. My doctor had me try a small dose of verapamil. I felt better instantly, with the first pill, and the dosage was increased. However, in my case it is a tricky medicine to use and it has taken me literally years to figure out how to change my life in order to safely coexist with it. Verapamil is the medicine that has the most positive effect on my heart disease. I have isolated many things that conflict with Verapamil that cause me to have a harsh, thumping heartbeat but sometimes when a particular event happens I get a fast, very weak heartbeat that debilitates me. It is during those episodes that I feel I am at a high risk of succumbing to CHF. If that is related to verapamil, perhaps that is what causes the drug to cause higher rates of death in CHF patients but I am not sure about that relationship. When I get those fast, very weak heartbeats, I take an extra 0.125mg of Lanoxin and that usually brings mister heart back to better behaviour. I am glad that you have done very well with amiodarone. You said that you had gotten lupus from Procainamide. Is that now a permanent condition or did it get better after the Procainamide was stopped? Best of health, Tony. email@example.com
Jon's note: If a CHFer does for some reason need a calcium channel blocker, amlodipine (Lotrel, Norvasc) should always be tried first
June's August 13 reply to Amelia's August 10, 2001 - Hi Amelia, Your niece should request a photocopy of all her tests results and read them herself. I found out so much more when I got hold of mine. Two months before I was hospitalized the x-ray read "enlarged heart" but no one mentioned that to me. My doctor is so busy I believe that when he read the x-ray at the emergency unit that night and saw fluid on my lungs, he diagnosed me with bronchitis but did not read what the results were.
At the time CHF was not in my vocabulary but you have the advantage of having experience behind you. I hope that your brother outlives the the time that the medical staff is saying, June. firstname.lastname@example.org
Amelia, August 14, 2001 - Hi Jon, I was wondering if you heard anything about a new drug for heart failure patients to improve breathing. My sister in law heard this on the 6:00 PM. They said it was pending approval from the FDA. It sounds wonderful. I sure hope the news is correct. Best to you. email@example.com
Jon's August 14 reply to Amelia's August 14, 2001 - Hi, I've gotten about 6000 e-mails about this. <g> The drug is Natrecor. You can read 3 articles about it on the IV Drugs page and there is more in the mailing list files available for download (last item on page). Natrecor is the brand name of nesiritide, an IV vasodilator - a synthetic version of BNP, a natiuretic peptide. It is an IV/injectable-only drug and is only given in the hospital, for acute decompensation. Jon.
Elton, August 14, 2001 - Hi, Does anyone have a CHF specialist they would recommend in the Oklahoma City metro area? There are none listed on this site for the whole state of Oklahoma. In addition, I've asked my primary care physician. He doesn't think there really is such a thing as a CHF specialist, just heart specialists. I've asked my the nurses and the office personnel at the heart clinic I go to. They say the same thing - that all the heart doctors work with CHF, but they don't think it's an area of specialty. I do know the people at the transplant center all impress me with their knowledge of CHF patients, but I'm not seeking a heart transplant. Maybe they're the people I need to ask. ESteelman@mmcable.com
Jon's August 14 reply to Elton's August 14, 2001 - Hi Elton, You're running into the ignorance of the general medical community, who know very little about CHF, period. If there is no such thing, why is there a professional organization in the USA named "The Heart Failure Association of America" formed by Marc Silver among others, just for health care providers who specialize in heart failure treatment and research? ;-)
The American Heart Journal - a prestigious American peer-reviewed medical journal - even specifically names these CHF specialist cardiologists as the best treatment source for CHFers - better than "regular" cardiologists. There are indeed heart failure specialists and being treated by one can be the difference between night and day for your quality of life. Your doctors and local health care providers quite frankly don't know what they are talking about and they don't stay up to date on cardiology medical journals! Who do they think works at all the CHF clinics in the country? <lol> Jon.
Autumn, August 14, 2001 - Hi everyone, I just need to vent. I am having a very hard time right now. My husband is acting out again. I really should handle it better but I have been pretty stressed out because today was my spinal tap to check for MS. My husband drove me to the city for my spinal tap but we did not do well. Now we are not speaking. My neurologist, spinal doctor, pain doctor, and internist all suggest I may have MS. My internist said it would explain all my symptoms from neuropathy, balance problems, muscle constriction and foot drop, hip pain, weakness on my left side, fluctuating vision problems, bowel problems, loss of reflexes, the episode of not being able to speak for awhile, back problems, and heart and respiratory failure. He said it is important we find out so we can treat the respiratory failure since that is especially life-threatening.
I am so overwhelmed by dealing with one thing after another for the past 2 years. I am frustrated at being sent from one specialist to another, yet getting nowhere actually dealing with my problems. Is this the way the medical process goes? It is hard to keep dealing with the pain that wrecks my sleep, and the breathing problem; often feeling like I am going to pass away if I sleep because when I'm having an episode with my breathing it fades to the point that when I exhale I do not automatically inhale and must do it consciously till the episode passes, which can be several hours.
I am struggling to get answers on what the problem is and how to deal with it. It is all very wearing. Right now I feel very down. I got the spinal tap at 7:00 AM and at 3:30 PM they called and said I needed to go to the local clinic for some blood tests to go along with some tests from the spinal fluid. I'm scared this means they found something. I am especially afraid to have MS, if it is causing respiratory and heart failure. If it's doing that, what chance do I have? I am sorry I'm such a downer right now. I am going to go back to bed and hope tomorrow will seem brighter. I haven't had much sleep lately. Lack of sleep makes it even harder to deal with things.
Thanks for listening. I hope you can understand how I'm feeling. I really try to keep myself up but sometimes I fall down for a bit. Thanks again for listening, Autumn. AmberDawn-Blzn@webtv.net
Tom W's Auust 14 reply to Scott S' August 13, 2001 - Hi Scott, My one and only cath was done on the inside of my left arm between the elbow and shoulder. I have no idea of the medical term for this procedure. I did not lie flat on my back for long periods as is required when the leg is used. Anyway, mine was no problem at all. I stayed lying down in the recovery room for about an hour before they wanted me sitting up. From then on I had to hold my arm straight out for an hour or so propped on a pillow. I was up walking about with my arm straight out within 2 hours. It created quite a stir. No one in the cath lab nor the nurses had ever seen the procedure done at that site before. They were accustomed to forcing patients to be still, flat on their back for 8 to 10 hours. firstname.lastname@example.org
Mandi P, August 14, 2001 - Hello everyone, I just happened upon this site searching for "side effects of toprol xl" and I hope that maybe someone here can help me. I am only 27 years old and have had heart palpitations since I was 13 years old. Throughout the years, my palpitations have gotten worse and I was prescribed 50mg Toprol-XL in December of 2000. I had been taking the medicine since then with no side effects but stopped abruptly a few weeks ago for two weeks due to not having the money for it.
Since I have been taking it again - for about 3 weeks now - I have become very weak, passing out, and having no energy whatsoever. Over the past week I have started experiencing extreme nausea and flu-like symptoms. Twenty to 30 minutes after taking Toprol I end up on the couch, unable to move at all for up to an hour. Three days ago I broke down and went to the emergency room. An EKG came back with only slight problems. My heart rate was 95 bpm and my blood pressure was 134/87.
Today I went to my doctor. I was told that I had bronchitis and that the swollen feeling in my chest was fluid on my lungs. He also did an EKG and a breathing test, which I failed. He said the heart problems I was experiencing were a direct result of the bronchial infection putting a strain on my heart.
My biggest concern is the medication he prescribed for me. He said it would be safe but I am a little scared. He gave me an antibiotic, phenegren, and Serevent and Nalex. The serevent is a bronchodilator and the Nalex an antihistimine, which bothers me. These are two of the things they have forbidden me in the past to take. Does anyone know any of the side effects of taking all these medications together? I went out and purchased a pill sorter because I was afraid that I couldn't keep up with it all.
Quick recap - an antibiotic BID, phenergan TID, Nadex BID, 2 puffs Serevent BID, and 50mg Toprol-XL once daily. I was also given a prescription for Prilosec and was told to take it once a day before dinner. Any advice? Thanks, Mandi. email@example.com
Jon's August 14 reply to Mandi P's August 14, 2001 - Hi Mandy, I am not commenting on the drug combination because I don't know enough to do so. However, stopping a beta-blocker cold is a really bad idea. I can only say that you should be examined immediately by a heart failure specialist. Your case sounds suspiciously like a whole lot of our cases here, with misdiagnoses abounding, usually as bronchitis or gallstones when the real problem was heart failure. Jon.
Tracey C, August 15, 2001 - Hi all, Since being taken off Coreg and Lanoxin, and since my Zestril was cut in half, I have had really low blood pressure. I would have thought the opposite but it's been running about 80/50 during the day. There was one time when it was 140/90 but that was at the doctor's office so I'm assuming it was a white coat episode. I'm due for an "off meds" echo but am fairly certain I've remained the same. I still don't need any Lasix and my exercise tolerance is good. I'm just confused as to why it would be lower and not higher off meds - any suggestions? Thanks, Tracey. firstname.lastname@example.org
Davida's August 15 reply to Mandi P's August 14, 2001 - Hi Mandi, Starting up back on the same dose is not sound. You may have wanted to wean yourself back on. In any case I can understand lacking the money for the meds but maybe in the future you can spread your doses out to stretch what you have left, or contact your doctor's office and ask if they have samples that can tide you over. Be very careful when stopping your meds. Check with your doctor. Maybe he can prescribe a lower cost alternative. Cavalier_1@msn.com
Brandy's August 15 reply to Elton's August 14, 2001 - Hey Elton, I don't know about the Oklahoma City area but in Tulsa at Cardiology of Tulsa (St. Francis hospital) there are some awesome cardiologists. There is one (I wish I could remember his name, he is from another country and has a difficult name) that I have seen a couple of times when my regular awesome cardiologist was away, who was also really good. If you don't mind the drive, you might check there. The number is (918) 494-8500. Brandy. TNBLee@prodigy.net
Stephanie, August 15, 2001 - Hi everyone, I was wondering if anyone else has changed their driving habits since cardiomyopathy and CHF. I only drive locally and I live in a small town. Some days I don't feel comfortable driving at all. I am pretty much on the standard line up of meds. I feel like my responses are not quick enough and it takes every ounce of concentration I have to drive my car. Everything seems to move so fast. Sometimes I think maybe it's all in my head, maybe I am just afraid and I just need to get out there and do it. Any feedback would be greatly appreciated. Thanks a bunch and God bless, Stephanie. email@example.com
Clarence M, August 15, 2001 - Hi, My daughter told me she had her televison on the other night to a network news program, not paying particular attention until the announcer said that a new drug could substantially reduce the risks of CHF. Does anyone know what they were talking about? firstname.lastname@example.org
Walter K's August 15 reply to Elton's August 14, 2001 - Hi Elton, Sorry I can't help with Oklahoma but it is probably a good idea to see the people at the transplant center even if you aren't a transplant candidate. My CHF specialist (in Philadelphia) and her colleagues are part of a combined CHF/heart transplant unit and I think the two specialties go together because heart transplants are frequently done on CHFers. Good luck. The advice you have been getting from medical people about CHF specialists (that they don't exist) is amazing - see the transplant people. email@example.com
Sheryl, August 15, 2001 - Hi, My mother's cardiologist put her on Coreg. He put her on 12.5mg once a day. Is Coreg given just for hypertension? Is it ever to be given just once a day? I asked her if he mentioned anything about CHF. He did not monitor her at all. I want to call him and talk to him but she is against this. I was monitored with every increase in my dose. If I get some feedback, I can print it out and show her. Why won't parents listen to their kids? <g> Thanks for your help. firstname.lastname@example.org
Jon, August 15, 2001 - Hi everyone, For those interested in Natrecor, the new CHF drug, I have updated the page my info about it is on: www.chfpatients.com/CHFinotropes.htm, my IV drug page. The update is not complete and I have added no new Natrecor info because it was all there but the final FDA approval already. However I added a lot of general info on IV CHF drugs in the form of an intro at the top of the page. I hope it helps. :-) Jon.
Pat T's August 15 reply to Stephanie's August 15, 2001 - Hi, My driving has changed drastically since DCM/CHF. I used to drive for relaxation. Now most days I drive very little. I find that driving distance depends on tiredness. Some days I feel rested and can comfortably drive up to 15 miles. Other days I drive no further that 2 to 3 miles. The remainder of the time I stay home or have someone pick me up. I find that when I am driving I cannot let my mind wander, look at the radio dials, etc. I must concentrate on driving and let nothing interfere. I have discovered that stop and go driving is much easier than highway driving. Stopping at a red light helps to give concentration a short break. I do not look forward to the day when I am no longer safe to be behind the wheel of a car. I have no idea if others experience the same feeling about driving other than you and I. I suspect there are many others. PTYoumans@aol.com
Ben B's August 15 reply to Stephanie's August 15, 2001 - Hi, I think driving is only a problem if you have a serious arrhythmia, are really decompensated, or if you have an ICD that is constantly firing. I really think people paralyze themselves with their thoughts when they know they have a disease. For me, driving was one of the few things that made me feel comfortable when I was first diagnosed and the same for walking. My Achilles heel was, and still is to an extent, standing in a line. If I am moving I'm okay but if I'm standing still I get aware of my condition and start feeling funny. After over 4 years I'm sure it is in my head, but it still bugs me. Everybody is different. If it doesn't bother you not to drive, why torture yourself? But if you are missing out on things you'd really like to do because of fear of driving, I would try to get over it, provided your doctor says it is okay. email@example.com
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.