The paperwork never ends The Archives
January 16-31, 2004 Archive Index CHFpatients.com

Jon 1-16     sorry for lack of posts yesterday
 
Charlotte H 1-16     prayer request, skin care, and more
 
Ruthie A's 1-16 reply to Kate's 1-14     Immodium experience & more
 
Sharon 1-16     raising Coreg dose is tough
 
Pam 1-16     doctor's comment puzzles me
 
Jon's 1-16 reply to Pam's 1-16     doctor's comment
 
Laurie P 1-16     does cold air bother anyone else?
 
Craig B 1-16     cramps and stomach upset questions
 
Kate 1-16     SSD article in newspaper
 
Peggy 1-16     when will generic Coreg be here?
 
Valerie R 1-16     informed patients do better & more
 
Bernadette V 1-17     need some encouragement & support
 
Jons's 1-17 reply to Bernadette V's 1-17     blood tests & valve repairs
 
Jean's 1-17 reply to Kate's 1-16     generic drugs and more
 
Kay G 1-17     not interested in sex anymore - help!
 
Dave T's 1-17 reply to Craig B's 1-16     Lasix and cramps
 
Joseph 1-17     biventricular pacer really helped me
 
Jim R 1-17     seek post-CHF life insurance experiences
 
Kate's 1-17 reply to Craig B's 1-16     cramps mean blood tests
 
Charlotte H's 1-19 reply to Kay G's 1-17     CHF and sexual activity
 
Ruthie A's 1-19 reply to Kay G's 1-17     CHF and sexual activity
 
Kathleen M's 1-19 reply to Laurie P's 1-16     breathing in cold air
 
Linda O's 1-19 reply to Bernadette's 1-17     coping emotionally & physically
 
Barbara M's 1-19 reply to Peggy's 1-16     generic Coreg is now available
 
Crystal S' 1-19 reply to Jim R's 1-17     life insurance
 
Tracey C's 1-19 reply to Jim R's 1-17     life insurance with heart failure
 
Hope M's 1-19 reply to Kay G's 1-17     losing libido experience
 
James 1-19     low sodium experience
 
Nancy S' 1-19 reply to Craig B's 1-16     cramps experience and more
 
Glenda Smith 1-19     seek aorta valve repair experiences
 
Joy's 1-19 reply to Bernadette V's 1-17     coping with CHF & more
 
Patrick W 1-19     seek CHF specialist near remote area
 
Jan W 1-20     seek Herbalife info & experiences
 
Jacky's 1-20 reply to Barbara M's 1-19     generic Coreg availability
 
Dorothy's 1-20 reply to Charlotte H's 1-16     dry skin, fatigue & more
 
Leah K 1-20     how do I know if I have CHF?
 
Jon 1-20     generic Coreg not available in USA
 
Anne 1-20     questions on vein distention & angioedema
 
Linda B's 1-20 reply to Nancy S' 1-19     also have exercise questions
 
Jon's 1-20 reply to Linda B's 1-20     resistance exercise
 
Myrtle C's 1-20 reply to Charlotte's 1-16     dry skin and sinuses
 
Myrtle C's 1-20 reply to Kay G's 1-17     lessened sexual desire with CHF
 
Myrtle C's 1-20 reply to Leah K's 1-20     youth, CHF, doctors & more
 
Jack D's 1-20 reply to Barbara M's 1-19     carvedilol also comes as Dilatrend
 
Jon's 1-20 reply to Jack D's 1-20     what's the price difference?
 
Anthony P 1-20     growth hormone in the news for CHF
 
Charlotte's 1-21 reply to Kay G's 1-17     & seek stress test experiences
 
Sandy 1-21     has anyone gotten SSD on first try
 
James 1-21     seek accounts of Cincinnati docs
 
Kris' 1-21 reply to Vonda's 1-14     we must educate ourselves
 
Vicki J 1-21     thanks to all
 
Kathryn's 1-21 reply to Leah K's 1-20     coping with heart failure
 
Crystal S 1-21     confused about generic Coreg
 
Jon's 1-21 reply to Crystal S' 1-21     generic Coreg
 
Jon 1-23     be back tomorrow
 
Curt H 1-24     seek CHF doc in Houston
 
Glenda 1-24     online valve replacement resource
 
Pam's 1-24 reply to James' 1-21     CHF doc recommendation
 
Margaret D's 1-24 reply to Sandy's 1-21     I got Disability quickly
 
James F 1-24     what does this echo result mean?
 
David Y 1-24     seek cardiolite stress test experiences
 
Margaret 1-24     am I over reacting? what tests do I need?
 
Jon's 1-24 reply to Margaret's 1-24     tests I would have done
 
Beckie H 1-24     is this normal - pressure & pulse?
 
Jon's 1-24 reply to Beckie's H 1-24     pressure & pulse on CHF meds
 
Tim H 1-24     is this okay on low sodium diet?
 
Jon's 1-24 reply to David Y's 1-24     cardiolite stress test resources
 
Kathy H's 1-24 reply to Sandy's 1-21     I got SSD first try
 
Brenda H's 1-24 reply to Curt H's 1-24     Houston CHF doc recommendation
 
Ruthie A's 1-24 reply to Margaret's 1-24     coping with all this jazz
 
Jacky's 1-24 reply to Curt's 1-24     Texas CHF doc recommendation
 
Craig B 1-27     what is being "in" CHF?
 
Pam 1-27     whole family is sick!
 
Margaret's 1-27 reply to Jon's 1-24     I will get tested
 
Margaret 1-27     is this a sign of heart disease?
 
Barbara M 1-27     carvedilol is available in Canada
 
Ed 1-27     seek North Carolina CHF doc
 
Patricia 1-28     BNP results & acute CHF
 
Jon's 1-28 reply to Patricia's 1-28     BNP results & acute CHF
 
Patrick M 1-28     seek CPAP machine experiences
 
Theresa 1-28     seek info on results of stopping Coreg
 
Charles S' 1-28 reply to Sandy's 1-21     got SSD first try
 
Patricia's 1-29 reply to Jon's 1-28     I need a heart failure specialist
 
Ken N 1-29     does anyone take Inspra? (eplerenone)
 
Donna V 1-29     should I reduce my Coreg dose?
 
Joe E 1-29     SSD question
 
Joy's 1-30 reply to Donna V's 1-29     Coreg, fatigue and heart failure
 
Henry S' 1-30 reply to Donna V's 1-29     Coreg, fatigue and heart failure
 
Cristina L's 1-30 reply to Donna V's 1-29     Coreg, fatigue and heart failure
 
James' 1-30 reply to Patrick M's 1-28     apnea and PAP advice
 
David W's 1-30 reply to Donna V's 1-29     Coreg and also to Joe about Disability
 
Charles' 1-30 reply to Joe's 1-29     disability payments and age
 
Ken N 1-30     BNP question
 
Nancy 1-31     husband has CHF, need suggestions
 
Kate 1-31     proBNP test questions, pacer no help
 
Jon's 1-31 reply to Kate's 1-31     proBNP
 
Wanda 1-31     would like to make some e-pals
 
Ken N's 1-31 reply to Joe's 1-29     disability payments and age
 
Sandy 1-31     seek chemo/CHF experiences
 


Jon, January 16, 2004 - Hi everyone, Sorry for not putting up posts yesterday. I fixed a couple of hundred broken links and if I looked at one more HTML tag, my brain would have exploded - this site has almost 9,000 links total. <g> I am changing my e-mail address so if you use jon@chfpatients.com, you'll need to use the contact form from now on to reach me. I am sorry but it has become unavoidable. The headaches are in the details. Jon.


Charlotte H, January 16, 2004 - Hi, I have very dry skin. Has anyone found a good lotion? I also have sleep apnea but it seems like I always have trouble with sinus infections and congestion when I sleep with my mask. I have found it very hard to sleep with my mask on. My nephew says that it will help keep my lungs clear since I have CHF. Do you have any ideas on how to adjust it?
     I have 3 heart valves that leak. I am thinking about talking to my doc about valve replacement. This is a very scary decision that I have thought about for awhile. I have 3 valves that leak. My last echo showed the leakage getting worse. My doc thought it's because I stay in a-fib, for which meds and shocking haven't worked so far.
     I need lots of prayer to get me on track again. I never knew a person could be so tired all the time. Sometimes I think I must be pretty lazy. charlotte730451@juno.com


Ruthie A's January 16 reply to Kate's January 14, 2004 - Hi, I'm sorry to read that you have the GI flu, Kate. I am just getting over a 14-day stint of what we thought was the same thing, compounded by the regular flu. It turned out to be an intestinal bacterial infection. Needless to say, I was a sick puppy! My doctor suggested Immodium, knowing all my meds. I didn't have any problems or interactions because of it. I also took Lomotil with the same results. Unfortunately, they didn't help and that's how we discovered the bacterial infection. A simple course of antibiotics and I'm a new woman! I hope you get to feeling better soon, Ruthie A. rlaba51@yahoo.com


Sharon, January 16, 2004 - Hi, I sure hope this Coreg is worth it! I slept 2 hours and 15 minutes last night. I am still wide awake. I just began an increased dose of 6.25mg and am already wheezing - I have asthma and mild COPD. I will stay on it for another 2 weeks but if these side effects remain, I will back off to 3.125mg. I hope a little is better than none. sparkywilliams@att.net


Pam, January 16, 2004 - Hi, Last time I saw my CHF specialist, she was again unhappy with my blood pressure. The first time I saw her it was 197/115 and this time it was 167/95. I was just happy because it came down some and showed her my (lower) blood pressures from home. She said something puzzling: That with my heart as dilated as it is, I should not even be able to have blood pressure that high. She ordered a stress test, which is one I have not had yet, and told me to bring in my home monitor next time I come.
     Jon, do you know what she might have meant when she implied I my heart should be incabable of the blood pressure I have? Hugs, Pam. spirlhelix@yahoo.com


Jon's January 16 reply to Pam's January 16, 2004 - Hi Pam, Second guessing doctors is futile, but she probably means that an enlarged heart is a weakened heart, thus the comment. However, I am surprised to hear that from a CHF specialist, since afterload can always raise blood pressure. Jon.


Laurie P, January 16, 2004 - Hi, I have dilated cardiomyopathy and I'm taking meds. I am new to all the symptoms of DCM and CHF, I was diagnosed in November of 2003. I was wondering if anyone else experiences difficulty in cold air. The temperatures here in Massachusetts have been very cold (single digits) and a below zero wind chill the past few days.
     Every time I go outside, I feel tightness in my chest and start coughing. Is that one of the unlucky things that CHF brings on us? I try to keep my face covered as much as I can, but I wear glasses and they keep fogging up and I can't see through them! Should I let the doctor know? Thanks for all your support. Laurie. lrp3lmp@aol.com


Craig B, January 16, 2004 - Hi there Jon and others, This is with regard to the constant sodium/salt issue. What do you know on the cramps story? I have minor cramping in my feet and hands sometimes, like not really intense, just that kind where you move your foot and toes or hand and fingers, and they kind of just stay there. You feel like they are going to cramp up, but they don't, quite. It's the same sometimes if I twist: I can feel a slight cramping in my sides. It is pretty weird and not exactly pleasant.
     Every time I mention these things to people, they say, "Oh you must be low in salt." Does low salt cause cramps or has this been overruled by people in the know? Also, is it a possible condition of the meds we take? I'm taking Lasix, Coreg, Aldactone (spironolactone), ramipril, aspirin, folic acid, and oxazepam and anganine as needed. My Lasix has just recently been doubled to 160mg per day and I have been suffering a fair bit of "tummy troubles" in the early morning - not quite nausea but just a yuk feeling in the gut. What about the serapax (oxazepam)? Any clues, advice or ideas on both the cramps and the gut feelings would be much appreciated! Regards, Craig. bayce@optusnet.com.au


Kate, January 16, 2004 - Hi, There was an article in our Sunday paper addressing the issue of back log in applications for SSD. Apparently our government has finally realized that making people wait up to 3 years to receive benefits is cruel and unusual punishment. Supposedly, they are in the process of totally revamping the system, but no details were given on when they will be doing a better job. At least the problem has been recognized. Kate. tothymecottage@frontiernet.net


Peggy, January 16, 2004 - Hi to all, I understand Coreg has been on the market for at least 5 years now. Does anyone know how much longer before it will be available in generic form? I think a lot of people are waiting for it. Best possible health to all. PFerro1@bellsouth.net


Valerie R, January 16, 2004 - Hi Everyone, I heard a doctor on television say, "There is no doubt that the best informed patients get the best care." This is true, and I believe my best information came from this site! I just got back from the transplant evaluation center for my second stress test in 4 months. Last time I got an 11 on the test; this time I had a low 14. The doctor said my EF is 15 to 20%, not the 10% of before. He also believes my heart has become somewhat smaller! I was diagnosed in 1995 but I didn't really get into it until I went into the hospital 3 times in 2002 to 2003. I found this site then, and I studied it. God bless you, Jon. vgrogers@aol.com


Bernadette V, January 17, 2004 - Hi everyone, I'm 43 years old and diagnosed with CHF. I have one valve leakage (mitral regurgitation) and a 70% enlarged aortic valve. I also suffer from chronic hypertension. Several doctors cannot understand why my blood pressure cannot be controlled. I don't indulge the sodium. I've had a kidney ultrasound to see if edema comes from there. I am waiting on my urine test to come back from the hospital checking on why I retain fluid and where it comes from. I hardly have an appetite at all.
     I relocated from Houston, Texas after being diagnosed with these medical conditions to central Pennsylvania. This new cardiologist has taken a strong interest in helping me find out why I have this tissue edema. Another point is that these cardiologists all seem to lead the patient to think that leaky valves are common and that there are no problems or concerns - not to worry - like it's not serious. Is this true? It's so visible in my lower legs, ankles and feet; they all swell and hurt something awful.
     I'm so depressed I could scream. I'm so tired and exhausted I can hardly walk up and down the stairs in my house. I get so out of breath to the point of passing out from dizziness. I was in the gym every day from 1996 to 2001 for 2 to 3 hour workouts when I started to actually become exhausted from working out. I cut back from 5 days to 3 days . Now I don't go at all. I do walk when I really have a good day. I can hardly breath without panting for air.
     I just stumbled on this site and thank God I did. I feel as though God led me here to meet others with the same condition. Before finding my current cardiologist, the one I saw before said I needed sleep aids and that it was in my head. At times I ask, "Why me?" I feel as though I'm a burden on my husband of 20 years and my 16 year old son, but what would I do without them both!
     I'm so tired of being tired. I can hardly walk now without stopping, the chronic pain in my legs and feet is awful. I was an avid walker of 3 to 5 miles a day and this is very discouraging when I can hardly get out of bed now. Please, if anyone wouldn't mind e-mailing me, I'd appreciate it very much for the support and company. I don't get out much any more. God bless, Bernadette. Sashaa61@yahoo.com


Jon's January 17 reply to Bernadette V's January 17, 2004 - Hi Bernadette, First, I would insist on a BNP test to see if I was in acute heart failure - immediately. It's a quick, easy and accurate way to know for sure. If you do have CHF and it's almost certain that you do, get started on proper treatment right away. The official treatment guidelines are at www.chfpatients.com/faq/guidelines_99_short.htm. Proper treatment will make you feel better!
     The valve issue is very real. Cardiologists often blow this off until it is severe. I caught a cardiologist doing this with my wife when I went with her to an appointment. He knows better now. <g> What you must do is make your cardiologist rate your valve regurgitation on the standard numerical scale of one to 4+. Anything over a 2 should mean a discussion of options to correct it!
     This is especially critical because valve leakage at 2 to 2+ or higher can cause heart failure. Likewise, if valves are causing CHF, fixing the valves can fix most of the CHF! So you should first get a copy of your medical records from your cardiologist, and then make an appointment to discuss your heart situation, beginning with the item above. For more on valve repair and heart failure, see www.chfpatients.com/surgery_old.htm#alternatives, www.chfpatients.com/surgery.htm#valve2, and www.chfpatients.com/surgeries_2001.htm. Jon.


Jean's January 17 reply to Kate's January 16, 2004 - Hi, I believe it takes 10 years for a drug patent to expire and be available in generic, so Coreg has a while to go. I was just diagnosed with CHF on Halloween, 2 weeks before my 50th birthday. I thought it was just a bad, long asthma attack. Surprise!
     I'm a veterinarian, so fortunately when the ER doc said, "Looks like you have a little congestive heart failure, we're admitting you" and walked out, I didn't have a heart attack on the spot but knew that if dogs can live years with CHF, so can I!
     I have been looking around the Internet for info and am very glad I found this site! Jon, God bless you! Cheers, Jean. jean@jimtown.org


Kay G, January 17, 2004 - Hi, This is my first post and it may be a bit off the mark. I've been dealing with CHF for about 3 years and only found this site a few months ago. It is a wonderful place! I read all the posts now about once a week. I am 38 years old.
     My husband is wonderful, but I am really frustrated. The problem is the CHF, the meds, and sex. I don't care anymore. It does not interest me at all. The mind is willing but the body seems shut down. Otherwise, I feel great. Is this a common side effect with women? My doctor says I should not worry about it. That is no help. Is there anyone else experiencing this problem? Thanks, Kay H. kyheart7@aol.com
 
Jon's note: That's one dumb doctor! Does anyone have any ideas?


Dave T's January 17 reply to Craig B's January 16, 2004 - Hi, A possible side effect of Lasix is cramps of the legs and toes, and you should discuss this with your doctor. You cna also have high uric acid levels, which cause gout symptoms. Dave T. djthibodeau@mybluelight.com


Joseph, January 17, 2004 - Hi, This is my first time on the site, wow! Getting a cardiac resynchronization device was like getting back my everyday normal life. It was like turning a switch on for me. What a difference. Joe. butlers@zoominternet.net


Jim R, January 17, 2004 - Hi, Have any of you been successful in aquiring life insurance after being diagnosed with CHF? fastbrak@gwi.net


Kate's January 17 reply to Craig B's January 16, 2004 - Hi Craig, When was the last time you had your electrolytes checked? It sounds like it could be a potassium problem. I get terrible leg and feet cramps when my potassium is low.
     Ask your doctor to order some bloodwork and do it as soon as possible. Low or high potassium can be dangerous, so call them. Kate. drekce14450@yahoo.com


Charlotte H's January 19 reply to Kay G's January 17, 2004 - (Jon's note - I only received part of this post, so here is what came through) ... all the time so I'm hoping once we get the fluid off again I will feel like having sex again. charlotte730451@juno.com


Ruthie A's January 19 reply to Kay G's January 17, 2004 - Hi Kay, I have encountered the same problem. My CHF symptoms require the maximum dose of atenolol, a beta-blocker. Unfortunately, beta-blockers have a very negative effect on one's sex drive, so I have very little to none. It would be terrible except that I have a wonderful and patient husband, and a great doctor, and we have found ways to work around the atenolol. <g>
     If your doctor blows you off, I would suggest you find another one that will listen to you and help you. There is no reason you cannot have a fulfilling sex life just because you have CHF. Hang in there, honey, there are solutions. Ruthie A. rlaba51@yahoo.com


Kathleen M's January 19 reply to Laurie P's January 16, 2004 - Hi, I also have DCM and CHF. Before I was diagnosed, I thought I had exercise asthma during the winter. Any exertion at all outside and I would feel that the air I breathed only got in as far as the base of my throat. I had an EF of 20% when I was first diagnosed. I have been on Coreg, losartan, furosemide, and Lanoxin for 5 years. My EF measures in a normal range now and I breathe just fine on cold days. Perhaps you will notice this improvement also if you respond well to treatment. kavern@juno.com


Linda O's January 19 reply to Bernadette's January 17, 2004 - Hi Bernadette, I can certainly identify with your feelings of being a burden on your family. I have been married 43 years and my husband is understanding also. I think if this were reversed, would I be as good a spouse to him? Your son is at a hard age to understand.
     Just sit back and watch - they will both always be there for you. You will find this site so helpful that it feels like home, and the people are so good to chime in to help you. I also know about the exercise and now being unable to go. Hang in there, even though I know it is easy to say and extremely hard to do. Linda Oline, age 64, EF 25%. lnoline@hotmail.com


Barbara M's January 19 reply to Peggy's January 16, 2004 - Hi, In response to Peggy's inquiry about generic Coreg, I renewed my Coreg prescription today (generic carvedilol) and the pharmacist said that generic Coreg has been available for about one month. Regards, Barbara M. blmathers@shaw.ca


Crystal S' January 19 reply to Jim R's January 17, 2004 - Hi, I never really thought about life insurance. I was 25 last year when I was diagnosed, but when I asked my mother-in-law about getting life insurance added to my husband's policy (my husband has had it since he was a child), she laughed and said I'd never get anyone to insure me. That's not really a knowledgable answer but it's all I've gotten so far. :-) alanis143@yahoo.com


Tracey C's January 19 reply to Jim R's January 17, 2004 - Hi Jim, I was approved a couple of years ago for a 20-year life policy after a physical exam and a review of my cardiac records. It surprised me, actually. The rates were not much higher than for a healthy person. Call a broker and have them do the leg work for you. There are companies who will insure high risk people. Good luck. 2tcollins@cox.net


Hope M's January 19 reply to Kay G's January 17, 2004 - Hi Kay, Have you talked to an ob/gyn? I had mitral valve surgery in 1994, followed (surprise) by CHF. I take metoprolol (a beta-blocker) among other meds and that surpressed my libido but I didn't bring it up to my doctor.
     However, 3 years ago I had a hemorrhaging ovarian cyst and had a total hysterectomy. Even though I had replacement hormones (compounded bio-identical) including testosterone, I still had no libido. Finally I talked with my gynecologist about it. He gave me a prescription for a compounded vaginal testosterone cream.
     Finally, it made a difference. He also told me that some of the professional athletes who die while playing sports know they have heart problems, but don't take the beta-blockers because it reduces their libido. That's a high price to pay. hlmcneil@earthlink.net


James, January 19, 2004 - Hi, Well, the first week of being on a true low-sodium diet has passed and it was relatively uneventful. I have determined that the vast majority of my SOB issues have likely been related to my sodium intake. It's amazing how much they subsided almost right away when I started limiting my sodium intake.
     To recap, I had always been told to do the low-sodium diet bit, but the doc never really explained it. So I went the common sense route: Limit eating out, no table salt, no cooking with salt, back off on the salty snacks and so forth. I was well aware of the counts from the nutritional charts on each item we bought and thought it was well in hand. How little did I know, though!
     After a while - umm, a long while I'm afraid - I finally got around to actually asking my doctor just what he meant by low sodium in mathematical terms, as in milligrams per day. What he told me utterly floored me - no more than 3 grams per day. Further research found that most docs recommend their CHF patients stay under 2 grams per day and the USRDA for healthy people is 2.4g. I was running about 5g on average and as high as 9g on some days.
     Last week I began a major program to restrict the sodium and I'm pleased to say it's been very successful. An initial quick drop was a bad idea; my body reacted very unpleasantly so I came down a little easier by stepping it off. Now I'm hanging down around the 2g daily level, sometimes closer to 1.5g. I have dumped all processed foods as mainstays: Boxed, canned, and even most jarred foods are out of my daily run. I still sample a few here and there, but not at meal quantities. Meals are fully prepared, salt is not used as a seasoning, and most seasoning is done with herbs and spices that do not include sodium (we still have a couple of blends that we're using up).
     A major weak spot has been bread. Most loaves run 120mg to 300mg per slice. Bagels run 350mg to 600mg or more per bagel. To combat this, we pulled out the Breadman Ultimate. I'm still adjusting my recipe, but right now I have it down to 5mg a slice and the flavor is not all that different than store bought.
     For the main part, I'm already feeling much better. It will take a little more time for the full effects to weigh in, but there's definitely been a positive response already. I just thought I'd take a moment to share a bit. :-) jnj@spamcop.net


Nancy S' January 19 reply to Craig B's January 16, 2004 - Hi Craig, I'll be reading with interest the answers to this question too. I went to my PCP last week and told him that I'm having the same problem, only my cramps are more severe as they do go into full-fledged cramps. He checked my potassium level and found it to be normal. I do know that just before I was diagnosed with CHF and was in failure, I was having this same problem.
     I'm also having breathing difficulties again and since I got my pacemaker in 2001 I was doing much better in all these areas. It makes me wonder if I can be going into failure again. Good luck, I hope your problems are resolved soon. Nancy. ns1@alltel.net


Glenda Smith, January 19, 2004 - Hi, I have just recently found this web site. It's so informative. To tell you a little about me, I am a 60 year old overweight white woman. I have several things going wrong with me. I had breast cancer 3 years ago and 2 years ago I had my left kidney removed because of cancer. I just wonder what cancer 2004 is going to bring!
     This June I was diagnosed with CML (chronic myloid leukemia). Because of the miracle drug Gleevec I am in complete remission. On top of all this I also have type II diabetes that I control with diet alone.
     I also have severe aortic stenois and need to have my aorta valve replaced in the very near future. I would like to visit with someone that has had it done or going to have it done. I have had a lot on my plate but I sincerely believe that God has his arms around me and He is still in control. He says He won't give me more than I can handle but I really am beginning to question that. Love and God bless, Glenda. glenda@joplin.com


Joy's January 19 reply to Bernadette V's January 17, 2004 - Hi Bernadette, I agree with Jon: Find out if you are in failure and talk with your cardiologist about your valve classification. For well over a year I was treated for adult onset asthma until I insisted that my shortness of breath and other symptoms were not asthma-related. I had never had asthma in my life, however I was aware that asthma can occur as the result of a viral infection. The good old echo stress test showed quite well my cardiomyopathy, with an ejection fraction of 15%.
     A nasty experience with pulmonary edema due to drug toxicity and many months of trying various drugs induced severe anxiety and feelings of total aloneness. I am very happy to tell you that I am without these awful feelings at this time. I am happy you have found this site because it can answer many of your questions and you can be assured you are not alone. My ejection fraction has risen to 38% and I am due for my scheduled repeat echo January 30, 2004.
     I have recently added CoQ10 and L-Carnitine to my dietary supplements but it is too early to report any changes. Like most of us with cardiomyopathy/CHF/leaking valves, I have my really good days, not so good days and some really nasty ones but my quality of life has really improved, thank the Lord.
     I live in northern Wisconsin and the weather here gets very cold. I cannot be outdoors for long periods of time even with a scarf over my nose and mouth. The same goes for really warm, humid days too. It does present a problem with walking so I do the best I can with remaining as active as possible until the cold or heat passes. Love and hugs, Joy. Pjkachel@aol.com


Patrick W, January 19, 2004 - Hi, I am a new CHFer and I live on top of a mountain in a remote part of North Carolina. In fact, the nearest town to me (Murphy) boasts that it is 2 hours from anywhere. I am located in the Tri-State area close to north Georgia, east Tennessee and the eastern part of North Carolina. I am trying to avoid a visit to Atlanta, and the Duke University area is a great deal away from me. Does anyone know of any CHF specialists near or closer to me than the two places mentioned. All ideas will be appreciated. noddy@grove.net


Jan W, January 20, 2004 - Hi, I'm a CHFer. My EF was 19% in June and 41% in November. I would like to lose weight. Does anyone know anything about Herbalife? I am taking Aldactone, lotensin, and Lasix. Any information would be helpful. Thanks, God bless. hnjwilkins@juno.com


Jacky's January 20 reply to Barbara M's January 19, 2004 - Hi, I just spoke with my pharmacist and she told me even though it is sometimes referred to by the generic name it is still Coreg - no cheaper generic yet! jackymwb@earthlink.net
 
Jon's note: I have e-mailed the FDA CDER drug info office and will let you know what they say about generic Coreg (carvedilol) in the USA.


Dorothy's January 20 reply to Charlotte H's January 16, 2004 - Hi Charlotte, After dealing with dry skin problems for years, some ideas I can share are: Apply a moisturizer and wear plastic or latex gloves when you must use water or soap like when washing dishes, washing your hair, mopping, etc; protect your hands by applying moisturizer and wearing gloves before gardening, dusting, going out in cold weather, etc.; and wear leather gloves for driving.
     Moisturizers that have worked for me include Udder Balm Moisturizing Cream with Vitamins A, D, and E; Aloe Vera Gel and Lanolin; and Triple Antibiotic Ointment. I use SafeSkin Powder-Free Latex Gloves with Vitamin E by Kimberly-Clark.
     I am so sorry you are having to deal with so many health problems as well as extreme fatigue. I can sympathize since I was diagnosed with CHF and an ejection fraction of 24% in March, 2001. Please do not think you are lazy because of fatigue! Extreme fatigue goes along with CHF.
     I was most fortunate that Coreg and other heart meds have worked for me with very few side effects. I no longer have to take diuretics because my EF improved to 54% in April, 2003. After my initial diagnosis, the cardiologist came to make this announcement, "You have congestive heart failure. You are a perfect heart transplant candidate!" I assured him he needed to put a heart transplant at the bottom of his list!
     I have added your name to my Prayer list and will pray that your health improves. Best wishes, Dorothy. DPowell806@aol.com
 
Jon's note: For dry skin, don't forget that running a humidifier can work wonders.


Leah K, January 20, 2004 - Hi, I am 28 years old and have come down with CHF symptoms. I am really scared. My heart rate is staying at about 120 beats per minute during rest, I have chest pain, shortness of breath, fits of coughing up frothy spit, and extreme tiredness and fatigue. I have also been cranky and irritable, had numbness and tingling in my face and arm, and I get spells where I pour sweat for no reason.
     I went to the hospital and they stuck me full of needles and put me on some kind of heart medication, but they are not a very good cardiac hospital, so I just came home because they had no answers for me. I was just wondering if anyone my age has ever had CHF and what tests specifically diagnose it? I appreciate any help you guys can give me.
     I am sorry to be a pain but I am really scared and do not want my loved ones who are already scared to death by this to be upset by me being scared too. Thank you, Leah. LeahAndAmy@msn.com
 
Jon's note: Get a BNP test. See www.chfpatients.com/tests/bnp.htm


Jon, January 20, 2004 - Hi everyone, According to FDA's CDER Drug Info Office, there is not a generic version of Coreg currently available in the United States. Jon.


Anne, January 20, 2004 - Hi, I have 2 questions: Does anyone know the significance of jugular vein distension that is more significant on the right side of the neck versus the left. This is also the case with the venous distention in my arms. Number 2: How do you differentiate the difference from CHF internal swelling and angioedema?
Thanks Jon, for all that you are doing on a daily basis. You have helped so many of us! HeartNHealing@aol.comAnne


Linda B's January 20 reply to Nancy S' January 19, 2004 - Hi, I have the same problem with cramps, expecially in my right leg, foot and upper thigh. My potassium and other electrolyte levels are normal. I also have "tummy troubles" like Craig does in the morning; if I get up early in the morning I get dry heaves, and forget about eating breakfast!
     My cardiologists, bless their hard-working selves, say it's not related to heart failure but I think it is. I just consider it part of the CHF package and live with it. They even did a gall bladder sonogram which came back clean as a whistle.
     On another issue, does anyone know of any exercise guidelines, other than walking? I can't go by how I feel because I can feel great one day and overdo it and then spend 2 weeks recovering. What about nautilus equipment? lmbanicki@yahoo.com


Jon's January 20 reply to Linda B's January 20, 2004 - Hi Linda, I do not know of any "official" guidelines on exercise for CHFers. It obviously depends on your cardiomyopathy cause and current overall condition.
     However, yes, resistance training is absolutely great for improving overall quality of life with heart failure. I prefer free weights myself but done carefully - after consulting your heart failure specialist - Nautilus equipment should be okay in general.
     Just remember that this kind of machine is meant to highly isolate muscle groups so you'll get less benefit in day to day life activity than you would from doing light power movements with free weights. The machines don't make you use so many of the smaller muscles involved in real life because you are too well supported in the machine. If you want to do power movements, I suggest getting a pro to show you the proper body mechanics so you don't hurt your back. Jon.


Myrtle C's January 20 reply to Charlotte's January 16, 2004 - Hi, I have sent you detailed info on using saline spray for your sinus infection problems. One needs to avoid infection rather than try to cure it with antibiotics. I find my skin got drier when I went on a diuretic and now steam my face and then add a good moisturizer. omieof3@yahoo.com


Myrtle C's January 20 reply to Kay G's January 17, 2004 - Hi Kay, I too am having problems with enjoying our sexual relationship. The many meds I take for CHF and for depression have caused most of the problem. My husband is understanding, but also frustrated. We are in our late 60s and didn't plan on living without good sex this soon. Sometimes women can get help by taking hormones that include testosterone. Check with a GYN doctor - not the one that said to live with it! omieof3@yahoo.com


Myrtle C's January 20 reply to Leah K's January 20, 2004 - Hi Leah, I have sent you an e-mail but also wanted to tell you to check The Manual on Jon's site for good info. There is more information here than you can remember. Just keep coming back.
     Yes, young people get heart failure for many reasons. You need to find a doctor who will work with finding out what is going on. The hospital is only as good as the doctor. Ask questions. Your anxiety may be causing some of your problems also. omieof3@yahoo.com


Jack D's January 20 reply to Barbara M's January 19, 2004 - Hi, Another brand of Coreg (carvedilol) is called Dilatrend and is made by Roche. maddjak@hotmail.com


Jon's January 20 reply to Jack D's January 20, 2004 - Hiya Jack, Glad to see you're up to tossing in a word here and there! Does anyone know what the price difference is between Coreg and Dilatrend? If it is significant, I might throw it on the Coreg page, with urls to back it up, of course. Jon.


Anthony P, January 20, 2004 - Hi Jon and everyone, I hope you are doing well. With this condition it's a good day-bad day thing. I was wondering if you have read about human growth hormone for dilated cardiomyopthy. Maybe I should ask my docs about it. Thanks and stay well. aparascandala@si.rr.com


Charlotte's January 21 reply to Kay G's January 17, 2004 - Hi, I'm sorry, I don't know what happened to the part of my post that came up missing. I had no sexual desire for about 4 years but after I went to the hospital and they got the fluid off I came home feeling much better and my sexual desire returned, along with being able to increase my physical activities. However, now that I'm retaining fluid again I have no interest. I'm going for a stress test Thursday. Can anyone tell me by e-mail what to expect? Charlotte. charlotte730451@juno.com


Sandy, January 21, 2004 - Hi, I am new to all of this. I have cardiomyopathy, mitral insufficiency /regurgitation and pulmonary hypertension. I have an EF of 20%. This just developed in November. I take Aldactone 50mg, Altace 5mg, Lanoxin, Lasix 40mg, and Coreg 6.25mg. I am also am taking Coumadin (warfarin) because of a blood clot in my lung in April. I recently applied for SSD and was told only about 40% get it on the first try and I will probably have to appeal. Has anyone received SSD on the first try? shallacy@mo-net.com


James, January 21, 2004 - Hi All, I am looking for recommendations on CHF specialists in the Cincinnati, Ohio area. I've looked at the practitioners list on the site as well, but I'm hoping to hear some opinions on care providers from patients. jnj@spamcop.net


Kris' January 21 reply to Vonda's January 14, 2004 - Hi Vonda, I am not a doctor but am a student of cardiac resynchonization therapy, a fairly new treatment for CHF (pacemaker therapy). In patients I have met who have CHF, they often have difficulty attributing their symptoms to disease. They attribute them to age, among other things. Doctors, family physicians particularly, don't know that much about CHF or heart disease in general. I think that stems from the sheer amount of information with which they are inundated. Patient loads are higher than ever and new therapies are constantly generated, not to mention the line of pharmaceutical reps sitting in the waiting room hoping for 2 minutes of a doctor's time.
     It is sad, yes, but the state of American health care is such that we must manage our own health and the health of those we love. Patient education is more necessary now than ever and until radical reforms of some kind, maybe the impossible kind, are made to American health care, the need for self-management of our health will only grow. I sympathize with you and your mother, and I wish you both the best. Kris. kris@winterhawke.com


Vicki J, January 21, 2004 - Hi, I want to thank all of you for your prayers and support. I got my Medtronic ICD on Monday. I got a before and after EKG and the difference is unbelievable. My little old heart is just ticking right along as it should be, not all over the page as it was. I can handle being tired as long as I know I have help for my heart if it happens to quit.
     Jon, I appreciate your last minute suggestion on the type. All they had shown me was the Medtronic and brochures on it. I had no idea what the Guidant was or anything about it. The Medtronic is actually smaller than I imagined. I know I'm swollen now but I don't think it will show as much as I thought.
     Bless you for this site. You can't imagine how many scared and sick people have benefited from it. I also know it takes a toll on your energy, but I feel God has chosen you for this task because of your love and caring attitude about people. God's love, Vicki J. vj6464@aol.com


Kathryn's January 21 reply to Leah K's January 20, 2004 - Hi Leah, My son was diagnosed with CHF about 6 years ago when he was 24. He's 30 now and is doing pretty well with it. He takes medication in the morning and the evening, but other than his medication, he leads a very normal life. His ejection fraction went from a low of 13% when he was first hospitalized with CHF to 57% at his last cardiology appointment.
     I'm sorry to hear of your condition, I know its scary for anyone. There are many good medications these days that can help you and help your heart compensate for this condition. Find a good CHF specialist and follow the dietary and medication schedule prescribed. It is possible to have a good quality of life with CHF. Kathryncole@hotmail.com


Crystal S, January 21, 2004 - Hi Jon, I'm confused as to why people are saying carvedilol is a generic for Coreg. My specialist at the Cleveland Clinic said that it is not. My insurance requires me to get a generic if it is available and so I asked the pharmacist too and they both said the same thing - there is no generic for Coreg. Are they wrong? Thanks for all you do, Jon, you're a life saver! alanis143@yahoo.com


Jon's January 21 reply to Crystal S' January 21, 2004 - Hi, Like I posted yesterday, there is currently no generic form of Coreg available in the USA. When it does become available, it will be called carvedilol because that is what is in Coreg - carvedilol; just like generic Lasix is furosemide. ;-) Jon.


Jon, January 23, 2004 - Hi everyone, After an awful heart day yesterday, I'm still beat so I am not putting up posts until tomorrow. See you then, Jon.


Curt H, January 24, 2004 - Hi, Can anyone suggest a good CHF doc in Houston? Thanks. chammock@hotmail.com


Glenda, January 24, 2004 - Hi everyone, I had asked a couple of days ago if anyone knew anyone that had received an aorta valve replacement. Well, through this post I heard from someone and he told me about a web site that is just geared for aorta valve replacements. If any of you are interested it is www.valvereplacement.com/ It is a very informative site. Love and God bless, Glenda. glenda@joplin.com
 
Jon's note: don't forget to use the links page at www.chfpatients.com/links.htm


Pam's January 24 reply to James' January 21, 2004 - Hi James, I live in Cincinnati and I've found all the other doctors around here agree Dr. Lynne Wagoner is very good. They all agree she's the best. She works at University Hospital, in charge of the Heart Failure and Heart Transplant Unit. They can usually get you in pretty quickly, even for a first time visit. Expect to be there about 3 hours your first time; they have about 4 medical professionals taking your complete life story, in turn! That was my experience, anyway. They are all very professional and supportive. Best of luck, Pam. spirlhelix@yahoo.com


Margaret D's January 24 reply to Sandy's January 21, 2004 - Hi Sandy, Yes, I am one of the very few and extremely lucky people who got SSD on the first try. I was approved in less than 6 weeks! No, that isn't a typo. I think some of it depends on what state you are in. Mine were based solely on my cath reports, which were terrible! I was very surprised as I expected to have to fight for several years. Good luck. mdavis10@tampabay.rr.com


James F, January 24, 2004 - Hey Y'all, I am wondering if someone could give me some info. I recently had an echo and the tech said my pressure was 3. Does anyone know what that means? I only know that the pressure reading was from the right side of my heart. Thanks, James F. JJJFlowers@juno.com.


David Y, January 24, 2004 - Hello All, Has anyone heard of a one day cardiolite exercise stress test? I go in for one this week and was looking around for some info beyond what they have given me. It reads like its a MUGA in the morning, 2 hours later a Vo2max, with another MUGA after. The way it sounds it will produce a bunch of interesting data, if it does not wear me out first. dyoung@ricochet.com


Margaret, January 24, 2004 - Hello, I hope someone can help me. I am a 33 year old woman who developed chest pain which spread to my left neck shoulder and arm, with a feeling of numbness and tingling about 2-1/2 years ago. This sent me to the ER with no diagnosis. Since then I have developed extreme muscle fatigue in my arms and legs. Many doctors and many tests later, I am still with no answers.
     I have shortness of breath especially when I exert myself. Doing simple housework exerts me horribly. I wake up at night gasping for air - for about a year now - and it's getting worse. I have occasional swelling in my feet and legs. I went through a stress test 2 years ago and the doctor said it was normal, although I had shortness of breath, chest pain, dizziness and an extreme drop in my blood pressure - the test had to be stopped at barely 4 minutes. Is this normal?
     Anyway, the last few days I have been having horrible chest, neck and shoulder pain whenever I exert myself and I have dizziness and nausea along with a new cough when I lie down. I'm a little worried. I am going to see a doc Monday. What tests should I be asking her to do? I'm sick of them saying I am too young for heart disease. I want it checked out. Am I right wanting it checked out or am I over reacting? Margaret. maggierose28@yahoo.com


Jon's January 24 reply to Margaret's January 24, 2004 - Hi Margaret, Ask for a BNP blood test and an echo. See www.chfpatients.com/tests/bnp.htm and www.chfpatients.com/tests/echo.htm. Get them done as soon as possible. You don't have to have heart disease to have heart failure - I know because because I have CHF without CAD. Jon.


Beckie H, January 24, 2004 - Hi, I have a question. I am diagnosed with cardiomyopathy and class 2 stage C heart failure as of 10/2003. I have done wonderfully with my meds and am one of the people who felt better on them. I take Coreg 25mg twice a day, Altace 5mg a day, and Aldactone 25mg a day. I am walking 1 to 1-1/2 miles daily and work full-time as a school nurse. After getting on a low-sodium diet, I found out how small my toes are really supposed to be!
     When I was increased to 25mg twice a day of Coreg last week my blood pressure decreased until it runs about 100/58, but my pulse has still stayed in the 90s. Before the dose increase, my pulse was 120 to 130. Is this normal? Thanks. Jon, this site means so much to me, thank you! rebekah.hanks@bsd.k12.de.us


Jon's January 24 reply to Beckie H's January 24, 2004 - Hi Becky, You're welcome. Your pulse is now much closer to what it should be to prevent further damage to your heart muscle. Your diastolic pressure (the smaller number) is a bit low but not enough to get bent over. ;-) My CHF doc wants my blood pressure around 100 over 70 with a pulse always under 100 beats per minute. Read the entire top of the Coreg page for more. Jon.


Tim, January 24, 2004 - Hi everyone, I have found this web site to be very informative. My 78 year old mom has CHF and COPD. She was recently released from the hospital following a one-week stay. I have a question about one of her meds. She is taking sodium bicarbonate tablets 3 times a day. Doesn't this fly in the face of a low sodium diet? Tim_tx_2000us@yahoo.com


Jon's January 24 reply to David Y's January 24, 2004 - Hi David, The exercise segment of the test does not involve gas exchange analysis, meaning it's a lot easier than a Vo2max test. <g> Here are some urls that aren't bad for explaining the test and the protocol involved. For the sites that describe a 2-day test, just pretend it's all done in one day with a long rest in between. ;-)

I hope it helps. Jon.


Kathy H's January 24 reply to Sandy's January 21, 2004 - Hi, Yes, I got SSD on my first try. I live in rural New York and the Social Security office here is very small and friendly. I was diagnosed in July of 2002, applied for SSD in September, and was approved right away and received my first check in January of 2003.
     It helped that my CHF doc and my PCP worked well together and had excellent notes. Both were very clear that they did not expect me to be able to return to any kind of work ever. My EF at the time was 30%. It went up to 45% for a brief time but is back down to 30% again. Good luck. glass_worker2000@yahoo.com


Brenda H's January 24 reply to Curt H's January 24, 2004 - Hi Curt, I go to the Baylor Heart Clinic in Houston. They are the best! I live in east Texas and have to drive about 2-1/2 hours to get there, and would drive twice that if I had to! I use Dr Torre. The staff is wonderful and would do anything for you. I guess you can tell that I can't say enough about them. <g> E-mail me if you want and I'll give you more info. Brenda H. waterwoman11@yahoo.com


Ruthie A's January 24 reply to Margaret's January 24, 2004 - Hi Margaret, I am sorry you have to go through all of this, especially the part about being too young. I was 46 when I was diagnosed with CHF and those first few times in the hospital I was bombarded with, "You are too young to have CHF." It made me so mad that I could spit! I finally learned to either let it slide and not pay attention, or make some retort such as, "Babies can develop CHF. Are they too young too?" It was hard not to be sarcastic.
     Don't let anyone tell you that you are too young and then blow you off. You have the right to find out why you are feeling so awful. So ask for those tests Jon suggested. If your doctor won't do them, find another one who will. It's your life and your body; take charge and make the doctors help you!
     Best wishes. Please let us all know what happens. Ruthie A. rlaba51@yahoo.com


Jacky's January 24 reply to Curt's January 24, 2004 - Hi, Try contacting the Texas Heart Institute. They are one of the best in the country. jackymwb@earthlink.net


Craig B, January 27, 2004 - Hi All, "Going into heart failure" - can someone please explain this to me? I keep reading and hearing, "When you are in heart failure." I have been diagnosed with IDCM 2 years ago. I have had 4 visits to Club Med total, 3 of them in the past month. Are we who have edema, medications, shortness of breath, hard to exercise, always "in" heart failure? Craig B. bayce@optusnet.com.au
 
Jon's note: See the first two paragraphs of The Manual.  


Pam, January 27, 2004 - Hi all, My son is fifteen years old. We went to the doctor last week because he'd been using my blood pressure monitor and I was concerned about high readings. They were equally concerned, and he had an ECG there in the office. He seems to have a thickened left ventricle and is going in for an echocardiogram next week.
     This is rough. My daughter was diagnosed with MS this August; I was diagnosed with CHF and dilated cardiomyopathy in October. Now my youngest child has hypertension and who knows what else. I am in shock. spirlhelix@yahoo.com


Margaret's January 27 reply to Jon's January 24, 2004 - Thanks Jon, I will ask for those tests when I see my doc. I ended up in the ER Friday. They sent me home with nitro. All they found was low potassium but he did tell me to have my doc refer me to a cardiologist to have an echo stress test. I hope they find out something soon. I'm feeling awful. Thank you so much. I appreciate all the help. maggierose28@yahoo.com


Margaret, January 27, 2004 - Hi, My blood pressure dropped form 120/70 to 80/55 during a treadmill stress test. I have read that this is a clue to CAD but my doctor says this is normal for some people. Is this normal or is it a sign of something wrong? maggierose28@yahoo.com


Barbara M, January 27, 2004 - Hi All, Carvedilol is available in Canada and may be purchased at www.universaldrugstore.com. Barbara M. blmathers@shaw.ca


Ed, January 27, 2004 - Hi, My name is Ed. I have CAD and cardiomyopathy. Does anyone know of a heart failure doc in Durham, NC? edbaird@netzero.net
 
Jon's note: How about Duke? See www.chfpatients.com/docs/docs_list.htm


Patricia, January 28, 2004 - Hi All, Jon, I hope you are feeling much better. I haven't written in awhile but read daily. I went to my doctor (PCP) because I was having all the CHF symptoms again and felt like I was back "in" heart failure. She said because BNP readings showed less than 18, I am not in heart failure, but more than 2 weeks later, I'm still feeling the same.
     I am taking Coreg, Altace, spironalactone, and Lanoxin. I did have an echo 3 weeks ago but haven't gotten the results yet. If you are "in" heart failure, will it always show on BNP?
     Thanks again Jon, for this wonderful web site. I remember a time when I had lots of questions and no answers. Now, most of my questions are answered before I can even ask. Patricia. pgp24815@aol.com


Jon's January 28 reply to Patricia's January 28, 2004 - Hi, No. Although the literature may never acknowledge it, I am certain by my own personal experience that you can have a very low BNP result and still have very troubling CHF - in other words, be "in" CHF. I suspect this only happens in people with chronic heart failure, not "new" CHFers. One tip is to be sure to get extra sleep when you are having symptoms. I also eat less, which relieves shortness of breath and feelings of abdominal swelling. Jon.


Patrick M, January 28, 2004 - Hi, I had a sleep study a couple of weeks ago and found out I was gasping for air and stopped breathing 32 times an hour! My pulmunary doctor gave me a prescription for a CPAP machine but I don't know which one to get since there are so many different brands. If anyone here in this group uses one or knows someone who does, I'd like to find out what brand has the best track record as far as reliability and longevity goes.
     The Respironics brand has a 2-year warranty so I'm wondering if these machines will only last about 2 years before they quit working or if they will last for longer than that. Does anyone know of someone who has had one that worked for longer than 2 or 3 years? Any information I can get will be greatly appreciated. Thank you and God bless. Patrick M. NarleyHarleyGuy@webtv.net


Theresa, January 28, 2004 - Hi, Please tell me if stopping Coreg can cause a seizure. My husband was taken off Coreg December 15, 2003 by his primary physician ( not his heart specialist) and told not to let anyone put him on beta-blockers after being on Coreg for almost 3 years. My husband died on January 22, 2004. He died after having some kind of seizure. I can't get anyone to tell me why. All I get is that it was heart disease and he saw the doctor two days before and was told he was fine and looked good. Do you have any answers beside heart disease? He was diagnosed as having enlarged heart. eroomm2@aol.com
 
Jon's note: See www.chfpatients.com/coreg.htm#stoppingbetas and www.jonsplace.org/rel/trip.htm#coreg for starters. Be sure to immediately get copies of his medical records from every doctor, hospital, clinic, and lab he has seen in the past 5 years.


Charles S' January 28 reply to Sandy's January 21, 2004 - Hi, I got SSD first try. I had a very unpleasant phone call from an SSD reviewer, who told me she saw nothing wrong with me and that 2 of her borthers had heart attacks, then returned to work and so on.
     As soon as I hung up, I contacted my US Representative via e-mail. I received a call from his office the same day, and sent them the necessary forms for them to look into the matter. I received another call from his office the next day, telling me SSD would get more information on my case and would make their decision after that. I received a call the same day from SSA telling me I would receive SSD the next month. Good luck, Charles S. rschurick@hillcrest-gcc.com


Patricia's January 29 reply to Jon's January 28, 2004 - Hi Jon, Thanks again. I went back to the doctor today. I insisted that I am having CHF symptoms. I don't think she believed me at all. I have to find a CHF specialist soon. Patricia. pgp24815@aol.com


Ken N, January 29, 2004 - Hi, My own CHF has been around awhile, since 1996, but only became truly nasty last year including blood clots and a 4 week hospitalization to balance me out. My doctor calls getting the CHF livable again as "balancing me out". Ha.
     Anyway, I am trying to avoid again going into the hospital to get the CHF under control and livable again, and we are trying out the new drug Inspra (eplerenone). I have read the press releases, etc. I want to hear from anyone who is actually already using this eplerenone.
     We are looking for that little bit of extra kick that will settle down my CHF, especially in winter with colds and virus working on congestion, and allow enough circulation (my EF is 10%) for me to remain comfortable at home instead of in a hospital bed. kennoetzel@aol.com


Donna V, January 29, 2004 - Hi folks, I need input fast. I see my doctor Monday 2/2 and I've again written him and sent along my own charting of blood pressure and heart rate. I'm on 50 mg Coreg per day and feel like a slug. I want to cut back on at least one dose a day of Coreg. Is that "done?" Is it the meds or the "condition" or both? I have blood pressure readings of 88/44 in the mornings. What else can I tell him that will get a response?
     I'll not have another electro till Spring. I'm asking for a BNP at least. I shall live with "well compensated." My doc can get transplant out of his vocabulary and I have my own personal reasons for that. Should I just live with this 50mg of Coreg and hope I adjust? It's been almost 3 months now and I am glad to still be here. Whatever, anything, advise. Does cutting back on Coreg make life better or worse? Thanks , Donna V.
     PS. I love this site and have met several really neat friends through it. dmvditty@aol.com


Joe E, January 29, 2004 - Hi, If a person qualifies for SSD, what is the maximum age that Social Security will pay SSD to? ramblingrosarian@yahoo.com


Joy's January 30 reply to Donna V's January 29, 2004 - Hi Donna, Perhaps you could suggest to your physician reducing your dosage of Coreg by 6.25mg each dose; so your daily total would only be reduced 12.50mg overall. It may be enough to make you feel less sluggish.
     I am taking 18.75mg Coreg twice daily. I started this increase in September and it has taken me this long to adjust. My morning blood pressures are usually like yours but by mid-morning they are 110/68 or somewhere close to that.
     Yes, your fatigue could be CHF or it may be a combination of drugs/CHF. I think it is often difficult to separate the two. The constant day-to-day fatigue when you first increase the Coreg I believe is due to the medication. With me it takes about 3 days before the effects of the increase kick in. I feel like I cannot get out bed in the morning and I can't wait to get back in the bed at night.
     The fatigue that waxes and wanes associated with energy use, I see as my CHF. For example: A busy house cleaning day will do it for me. Low blood pressure, medications, and CHF of course affect our energy but I have tried to determine where my own fatigue shows up and when. I don't know if this is any help to you.
     Good luck with your visit to your physician. I go to see mine next week after my echo tomorrow. Joy. Pjkachel@aol.com


Henry S' January 30 reply to Donna V's January 29, 2004 - Hi Donna, I can only tell you of my experience with Coreg. I made it up to 12.5mg twice a day and my heart specialist recommended I cut it back to 3.125mg twice a day. My blood pressure wasn't as low as yours, but enough to give me that awful sluggish feeling. I feel a lot better with a good quality of life, which is of utmost importance to me. This is a decision I think you and your doctor have to make. Let us know how you make out with your appointment on 2/2. Best wishes. hagaralso@aol.com


Cristina L's January 30 reply to Donna V's January 29, 2004 - Hi, I too felt like a "slug" on Coreg. I was tired all the time and never had much energy. The more I complained to my doctor, the more he believed me. Also, my arms hurt a lot and I later found out it was due to the low blood pressure from the Coreg. I didn't even make 25mg. I was then switched to Toprol-XL at 150mg. Although I'm tired some days this could be from being a working mother also. I feel a million times better than I was on Coreg. Maybe you should talk to your doctor about an alternative beta-blocker. There are others out there besides Coreg. My EF has improved, so I guess the Toprol-XL, along with everything else, must be working. clisa@optonline.net
 
Jon's note: Coreg is not as good for those with low blood pressure because it is also an alpha-blocker. Toprol-XL is only a beta-blocker - not also an alpha-blocker - so is a better choice for low blood pressure patients.


James' January 30 reply to Patrick's January 28, 2004 - Arrgghhh! You need to go to a board certified sleep doctor at a board certified sleep clinic to be properly tested for sleep apnea. Following the initial sleep study, if you are diagnosed as having apnea, the doc will have you back in for a titration. During titration they will adjust the pressure of an xPAP to a setting that eliminates your apnic/hypopnic events while observing you for any issues. Then you can get the device, typically right there at the clinic.
     Too often a doctor will prescribe one of these without the benefit of a proper study and/or titration, and that is absolutely unacceptable. You need that titration study for the unit to be set properly.
     As for what unit to buy, there are plenty out there and just about any will do the trick. Be certain that the one you get has a built in humidifier - you'll be happy that you did. Go to http://www.cpapman.com and you will find several units there for purchase. The Respironics is a commonly used unit, as are the ResMeds. Be sure to start off with a normal mask as well - nasal pillows are usually not good for those new to CPAP treatment. jnj@spamcop.net


David W's January 30 reply to Donna V's January 29, 2004 - Hi, After I had gastric bypass surgery, I reduced my Coreg from 50mg to 25mg. I also had to reduce my ACE inhibitor lisinipril to 5mg. In my opinion, there is no difference between the 25mg dose of Coreg and the 50mg dose. Coreg and lisinipril both lower blood pressure too much. I sometimes pass out from low blood pressure. Eating peanut butter and crackers seems to raise my blood pressure when it gets too low. I guess low blood pressure is something I will have to live with. My docs say I must take the Coreg and lisinipril.
     Joe, your SSD stays until you reach 65 years old, then it is called your SSA retirement. Your benefit won't change. davybwilson@webtv.net


Charles' January 30 reply to Joe's January 29, 2004 - Hi, SSD pays until age 65 and then regular Social Security payments go into effect. Charles S. rschurick@aol.com


Ken N, January 30, 2004 - Hi Jon, I have another question about being "in" heart failure. I read and understood your response to the origianl question; still it brings to mind what occurred this week. I do not want to re-enter the hospital (at this moment I just go SSD, therefore am living in the "gap" of no medical coverage at all) so the doctor said 2 things.
     One, this Monday a nurse will deliver some test equipment to my home for me to self-monitor my sleeping, breathing and associated blood levels of oxygen. Two, the doctor took some blood to check the level of something to see if I am currently in a CHF episode, since I am complaining that my current condition is not long-term livable. The result said like if the level is 2000, I must deliver myself to the hospital immediately, while if the level is 200 or even 400, I can continue to stay at home for the time being, while if the level is 800, the doctor says I need to go to the hospital.
     I just found and read up on BNP but those numbers dont seem to be the same kind of numbers that my doctor was speaking of. Thanks, Ken. kennoetzel@aol.com
 
Jon's note: Did you see the paragraph highlighted in yellow? It says, "Be aware of what units are used in your test results! Some labs are reporting BNP Test results in femtomoles, a metric measure. The manufacturer of the most popular test kit - from Biosite Diagnostics - did the unit conversion for me. If your report is in fmol/ml, you can compare your results to the numbers in the tables on this page by dividing your result by 3.45098."
     However, the 200 being okay and the 401 and up not being okay sound right to me.


Nancy, January 31, 2004 - Hi, How do I cope with my husband being diagnosed with CHF, high blood pressure, and diabetes? Our doctors have me so confused I don't know what to do. They told me to cut sugars, salt, and carbs but are no help when it comes to telling me how. He is very depressed at this point and is yelling at everyone, including the kids. I don't know what to do. Does anyone have any suggestions? Thanks. BalloonLady2@aol.com


Kate, January 31, 2004 - Hi, I recently had blood work to check my BNP. However, when they sent me a copy of the report, it said, "This assay measures ProBNP not BNP and has a very different reference range from BNP." Does anyone know what ProBNP measures?
     Also, I recently had my pacemaker interrogated. Although my heart shows improved function, I actually continue to feel worse than before I received it. I had to bite my tongue to keep from laughing when the device rep explained that I may fall into one of two categories: 1. a nonresponder - one who simply doesn't respond to the improvement; or 2. a lagger - one who lags behind in responding. So I had to confess to family and friends that I am, as they may have long suspected, either a nonresponder or a lagger. Actually, I find it to be just more jibberish, meaning "We don't know why you are not feeling better and we aren't going to waste any time trying to figure it out."
     Everytime I see someone about this device I find my life taking yet another bizarre twist. Perhaps I can start some sort of nonresponder/lagger site where we can all go and commiserate. I think I would actually be developing a real complex were it not for the fact that I've successfully lived for 22 years with 3 life-threatening diseases that could have killed me long ago. I have responded to and I have not lagged behind with any other treatment, so I find it just a bit suspicious that I should suddenly do so with this device. Kate. tothymecottage@frontiernet.net


Jon's January 31 reply to Kate's January 31, 2004 - Hi Kate, ProBNP is a sort of precurser to BNP in the body. It has been used in recent trials but I was not aware of it being used in actual medical practice (clinically). Frankly, I am not sure why it would be for a CHFer at this point in time, with BNP testing well standardized and effective. Jon.


Wanda, January 31, 2004 - Hi, I am new at this. I live in Wisconsin, am 46 years old, and married a wonderful man in July of 2002. I was coded dead and a week or so later I got my ICD. So far it's been doing fine with my heart doing its own work. I feel truly blessed. I would like to make some e-pals. Wanda. wanda_mcquiston@hotmail.com


Ken N's January 31 reply to Joe's January 29, 2004 - Hi, As someone else already replied, SSD is paid until age 65. At age 65 your payments source officially becomes normal retirement benefits. I wanted to add that the dollar amount of your benefit will not change. The original SSD benefits were calculated via the normal retirement benefit guidelines. kennoetzel@aol.com


Sandy, January 31, 2004 - Hi, I just went to my regular doctor and he asked me about the meds that I took 6 years ago for my chemo. He thinks that the medicine I took has caused most of problems. Has anyone else had this problem? shallacy@mo-net.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.

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