The paperwork never ends The Archives
June 16-30, 2002 Archive Index CHFpatients.com

John P 6-16     seek surgery experiences
 
Cathy's 6-16 reply to Jon's 6-14     stopping Coreg
 
Kathy's 6-16 reply to Cat's 6-14     diuretic experience and more
 
Cristina L's 6-17 reply to John P's 6-16     surgery experience
 
Cristina L's 6-17 reply to Cathy's 6-16     beta-blocker experience
 
Roger H's 6-17 reply to John P's 6-16     surgery experience
 
John P 6-17     more surgery questions & thanks
 
Joanne R's 6-17 reply to Kathy's 6-16     low sodium diet resource
 
Kathy 6-17     seek some ideas to overcome this problem
 
Valerie R's 6-18 reply to Kathy's 6-17     pill taking strategies
 
Diane's 6-18 reply to Kathy's 6-17     pill taking
 
Roger H's 6-18 reply to John H's 6-17     surgery experience
 
Mike 6-18     ACE inhibitor dose question
 
Jon's 6-18 reply to Mike's 6-18     ACE inhibitor
 
Wayne 6-18     there is hope!
 
Kay R 6-18     does anyone else fly off the handle?
 
Evelyn 6-19     CHF specialist made big difference
 
Joe S 6-19     there is hope
 
Joan A's 6-20 reply to Kay R's 6-18     temper, stress and hearts
 
Sheryl C's 6-20 reply to Kay R's 6-18     temper, stress and hearts
 
Jon's 6-20 reply to Kay R's 6-18     drugs and temper
 
Kathy 6-20     I have surgery coming up
 
Cristina L's 6-20 reply to John P's 6-17     surgery experience after CHF
 
Yvette's 6-20 reply to Kay R's 6-18     temper and stress
 
Margaret D 6-20     how do you feel on a bad day?
 
Pat's 6-22 reply to Margaret D's 6-20     bad day experiences
 
Patrick 6-22     Coreg dose and how I feel
 
Donna 6-22     update and more
 
Betty's 6-22 reply to Shelly's 6-12     seek more info on your condition
 
Betty 6-22     on eating too much salt
 
John P's 6-22 reply to Yvette's 6-20     life span with heart failure
 
John H 6-22     can Lasix dose matter this much?
 
Jon's 6-22 reply to John H's 6-22     things to consider
 
Nan 6-22     seek metoprolol experiences
 
Natalia's 6-23 reply to John H's 6-22     Lasix experience
 
Tom S' 6-24 reply to Natalia's 6-23     Lasix experience & more
 
Mike 6-24     seek others in the same boat
 
Steve 6-24     intro, any advice for me?
 
David W 6-25     losing my Disability and more
 
Kathy 6-25     why would I not be at meds target dose?
 
Ann Lau 6-25     seek adriamycin-induced cardiomyopathy CHFers
 
Ben B's 6-26 reply to David's 6-25     losing Disability payments experience
 
Natalie K's 6-26 reply to Kathy H's 6-25     below target dose experience
 
Denise 6-26     seek arthritis experiences
 
Paul D's 6-26 reply to Ann L's 6-25     chemotherapy induced heart failure
 
Cat's 6-26 reply to David W's 6-25     losing Disability payments
 
Michael's 6-26 reply to Ann L's 6-25     chemotherapy induced heart failure
 
Sandy 6-26     I am much better with pacemaker
 
Michelle A 6-26     what is a healthy RVEF?
 
Jon's 6-26 reply to Michelle A's 6-26     healthy RVEF number
 
Angie 6-26     desperately seeking big cheese
 
Juliah's 6-26 reply to John H's 6-17     also facing surgery
 
Robert S 6-26     persistent low EF frustrating
 
Donna V 6-26     is this muscle pain going to continue? & more
 
Noel 6-27     has anyone been treated for anemia?
 
Tracey C's 6-27 reply to Angie's 6-26     finding low-sodium cheese
 
Margaret D's 6-27 reply to Robert S' 6-26     numbers, how you feel and more
 
Tom S' 6-27 reply to Angie's 6-26     low-sodium cheese
 
Joyce 6-27     what is a thickened heart? update
 
Natalia 6-27     low-sodium cheese possibilities
 
Dale 6-28     some questions
 
Jon's 6-28 reply to Dale's 6-28     one opinion
 
Dale 6-28     what could be causing the nausea?
 
Jon 6-28     a new page is up
 
John H 6-28     can over exertion trigger ICD?
 
Catherine's 6-28 reply to John P's 6-16     maybe my story will help
 
Natalia's 6-28 reply to Dale's 6-28     my experience
 
Nancy's 6-30 reply to Denise's 6-26     rheumatoid arthritis experience
 
Sheryl C's 6-30 reply to Dale's 6-28     meds and low blood pressure
 
Barbara H 6-30     seek after hospital experiences
 
Dennis D's 6-30 reply to Donna V's 6-26     statin & muscle pain & weakness experience
 
Dennis D 6-30     remarkable things are possible
 
Rob 6-30     CHF is a touchy beast
 
Joseph P's 6-30 reply John H's 6-28     ICD experience
 
Catherine 6-30     why do NSAIDs make us worse?
 
Jack D 6-30     to anyone who uses a walker
 
Jon's 6-30 reply to Catherine's 6-30     why NSAIDs make us worse
 


John P, June 16, 2003 - Hi everyone, I have many health problems including cardiomyopathy. I am taking Coreg, Lisinopril, CoQ10, and taurine for this. Other meds include Prednisone, Ativan, and Pepcid. My EF was normal in December, 43% in February, and 37% in April.
     I am facing intense abdominal surgery (to have the rest of my colon removed - I have an ileostomy - and to have adhesions and scar tissue fixed) within the next few months. Has anybody faced intense surgery with a bad heart? I'm terrified. My colon perforated in October of 2001 and I nearly died. jp2074@aol.com


Cathy's June 16 reply to Jon's June 14, 2003 - Hi Jon, Thanks for reply. No, cost is not the reason. I am having chronic cough, wheezing and shortness of breath, but not from fluid. I am seeing a specialist for airway troubles and he is saying to stop the Coreg to be sure it is not from Coreg, as it can be. In the meantime I am being tested further - a rule out process. I went on Coreg so slowly and remember the effects. I fear stopping it in just 2 weeks. I will talk with the heart doctor on Monday and follow through. Thanks for quick reply. My heart seems to be doing well but who knows when I stop my coreg? Thanks, Cathy. cdpalmer@megalink.net


Kathy's June 16 reply to Cat's June 14, 2003 - Yes! My diuretic was changed and is now working like never before. The brand is different and the strength is greater, but nothing works well if I eat too much sodium. I surely do miss eating like my family can. Also, I will be seeing the surgeon on Tuesday, for my options on an aortic valve replacement. I'm a little nervous about the whole thing! ksugars@attbi.com


Cristina L's June 17 reply to John P's June 16, 2003 - Hi, In regard to your question about whether anyone has had surgery while having CHF, I had open heart surgery to repair my mitral valve in 2000, I even survived the heart/lung machine. I also just had surgery (I case you can say minor surgery) to remove a lump in my breast. Please make sure you get full clearance from your cardiologist that you are able to have the surgery. Good luck! My prayers are with you. clisa@optonline.net


Cristina L's June 17 reply to Cathy's June 16, 2003 - Hi, I had problems with Coreg and my asthma too, but rather than weaning me totally off the beta-blocker, we simply switched to the equivalent dose of Toprol-XL, which is 150mg. I don't get the wheezing that I used to get on Coreg, although I still have some asthma. I recently tried switching to Zebeta but my body didn't handle it very well. Toprol-XL has worked the best for me. Ask your doctor about switching. I think it's important you have your beta-blocker. Good luck and let us know how it goes. clisa@optonline.net


Roger H's June 17 reply to John P's June 16, 2003 - Hi John, I was diagnosed with CHF in May of 1997 at age 47, and had surgery in July of 1997 for abdominal aortic aneurysm, and an abdominal hernia repair in May of 1998 and April of 1999. It can be done. My Christian faith and excellent medical care were crucial to my surgery preparation and recovery. You will be in my prayers. rjhughs@juno.com


John P, June 17, 2003 - Hi Christina and Roger, Thank you for your kind responses. Did they take any special precautions for your surgeries? What were your EFs at the time? Roger, did they have to limit fluids after your surgery? Christina, how old were you for your surgeries?
     I'm 28 and I'm terrified that I won't make it to be 29. If it was just DCM I was dealing with, I wouldn't be so nervous. I believe with nutrition, supplements, medication, and exercise there's a solution somewhere; but having so many other things wrong - things that require surgery and perhaps further surgeries for things like hernias - really scares me. I also suffer from panic disorder, ever since I first had symptoms of ulcerative colitis. I can't breathe comfortably and this has more to do with my abdominal situations than my cardiomyopathy. Love to all, John P. jp774@aol.com


Joanne R's June 17 reply to Kathy's June 16, 2003 - Hi, I feel so strongly about this web site that I have to recommend it: www.lowsodiumcooking.com. Please check it out. The web master on the site shares our need to limit sodium intake plus he and his wife want to make one dinner for the whole family so every recipe has to taste normal. I just made a batch of the soy sauce substitute and it really does fill the bill, plus it has 25 mg of sodium in 1/2 cup instead of the more than 300mgs in each tablespoon of real soy sauce. I have also made red beans and rice, chili, and salt free Italian bread, all of which have been a hit with my family. Good luck, be well, and God bless! Joanne. muddyrds@hotmail.com
 
Jon's note: I hope everyone is using the Links page to find these resources.


Kathy, June 17, 2003 - Hi again, I have a small problem and hope someone can come up with a strategy. I am very compliant about taking my meds and I think I have actually missed only one dose since diagnosis. That's for the CHF meds, that is. For some reason, my mind is resisting the diabetes meds. How can I get in the habit of taking it just before meals like I am supposed to do? Right now I'm lucky if I remember it 2 meals out of the week. I carry it in my purse and have it in the big med box at home, but something isn't working. Any ideas are gratefully accepted. kathyh@linkny.com


Valerie R's June 18 reply to Kathy's June 17, 2003 - Hi, I don't know if it will help, but I have developed a system for the pills I take 4 times a day. I have 4 weekly pill holders. I put 2 out on the table in my kitchen, with the ones I take in the morning and after lunch. When I put those up, I put the 2 out that I take at 3:00 PM and after dinner. If you eat out, you could try the old note on the wallet. If you pack a lunch, put the pills in your lunch bag. Valerie R. vgrogers@aol.com


Diane's June 18 reply to Kathy's June 17, 2003 - Dear Kathy, I also am diabetic type II. I do not know what you are on. I am on Glucotrol once a day and Glucophage 3 - 500 mg per day. I also was having trouble scheduling all this medications. I kept forgetting my glucophage mid-day dose. I talked to my doctor and he said that in my case I could take one with my morning drugs and 2 at night. I would talk to your doctor and explain your problem. I know that people in our situation have to deal with so many med problems. It seems like I am forever refilling so I need to get my scripts updated to larger quanities. I hope things work out for you. dh3044@aol.com


Roger H's June 18 reply to John H's June 17, 2003 - Hi John, I did not change my fluid intake after any of my 3 surgeries, but I am always aware of how much I drink - is that your question? I asked the cardiac surgeon who performed my abdominal aortic aneurysm, to perform my follow-up hernia surgeries and he agreed to do so. Also, after both my hernia surgeries, I was taken to the cardiac floor and not the normal post-hernia-operative floor.
     Before both hernia operations the surgeon required complete tesing assuring my heart was up to it. As far as any testing before my aneurysm surgery, there wasn't much since I had a "big one" which had to be repaired. For me, the best formula was my faith, the prayers of many, and excellent medical care.
     We will keep you in our prayers. Let me know if I can ever answer any questions for you. I will do my best. rjhughs@juno.com


Mike, June 18, 2003 - Hi Jon, I am taking 25mg of Captopril 3 times per day. I also take 40mg furosemide, 16mEq Klor-Con, and 6.25mg Coreg twice per day. I sometimes get a little dizzy for about 5 seconds when I stand up after taking the Captopril. I was thinking about asking my cardiologist to lower my Captopril to 12.5mg per day. What you think about this idea? My EF is about 25%. MikeGovern@hotmail.com


Jon's June 18 reply to Mike's June 18, 2003 - Hi Mike, You're on a very low dose of captopril as it is. This is usually the starting dose, not the target dose. How long have you been on Coreg? If that is fairly new to you, that may be the cause of your "postural hypotension." It is important to distinguish between being lightheaded and being dizzy. Dizziness may denote a more serious problem than lightheadedness. Also be sure you are not dehydrated - it's very easy to mistake dehydration for a meds problem when taking a diuretic.
     If this is from low blood pressure caused by your heart meds, you'll have to talk it over with your doc about which med to reduce or whether to try to wait until your body adapts. I would vote for waiting if this is the full extent of the problem. Jon.


Wayne, June 18, 2003 - Hi Jon, I've written several times since my diagnosis with IDCM on May 14, 2002. My emotions and fears and hopes have been mirrored by the many messages posted here each day. I have tried to focus on hope coupled with "Thy will be done."
     Yesterday, my echo showed an EF of 65%. My purpose in posting these results is to simply show that there is reason to hope. My cardiologist is totally against reducing my medications, and I do not intend to argue the point, even though I would like to at least reduce the Coreg.
     I have been very compliant in all aspects of my recovery, including low salt, taking meds, exercise, use of a CPAP and prayer. Plus, I understand that I need to continue these things in order to minimize the chance of remission. My life will never be the same as it was before May 14, 2002, but it is far better than I thought it would ever be again on May 15, 2002. I made it through the bad times by reading this forum every day and plan to continue reading it every day. Plus, I learned what to expect by reading and rereading nearly all of CHFpatients.com. Who could read it all?! ;-)
     Thank you Jon, for your part in getting me and so many others through this ordeal. I'm not sure you can understand how much you contribute. Thank you, thank you, thank you. God bless. Wayne. whreos@earthlink.net


Kay R, June 18, 2003 - Hi, Does anyone else besides me have a temper problem along with their heart condition? I find myself not being physically able to cope with certain stressful conditions, and then I get furious and can fly off the handle in a second. Most of it seems simply beyond my control and I'm afraid it's leading me straight to a heart attack. Is this a common thing or am I the only lucky one?! <g> kayrockett@webtv.net


Evelyn, June 19, 2003 - Hi, I just thought that I would share information about the CHF specialist that I was referred to in Orlando. Dr. Molunski (with Florida Heart Group) is absolutely wonderful. On my first visit he spent well over an hour discussing my condition with me and before he stood up to go to his next patient, he asked if I had any other questions or concerns and then spent more time discussing my questions.
     I will be seeing him every 2 weeks while he boosts my Coreg from 6.25mg a day to what he predicts will be a 50mg maintenance dose so that he can monitor the increase and whatever side effects I may have. He runs the CHF clinics that this group has and I highly recommend him.
     Thank you Jon, for stressing to everyone that they should seek out a CHF specialist. It is because of you that I did so and feel like I am on the road to a long life now. eviefor3@aol.com


Joe, June 19, 2003 - Hi, I praise God there is light at the end of the tunnel. Eighteen months ago I had my aortic valve and one artery replaced after 60 years living a restricted life. Now I can even control my own weight with a 2-1/2mg water pill and even build a deck. Every woman I know hates me for the being able to control my own weight. I've lost 30 lbs in a few months. Of course I had to have the doctor remind me to stop taking it and the doc was my PCP, not a cardiologist. Everyone keep the faith. There is light at the end of the tunnel. Joe S. jes@gbis.com


Joan A's June 20 reply to Kay R's June 18, 2003 - Hi, I thought that temper caused heart problems! <g> Just kidding. I have the same problem. I am trying to teach myself hum-m-m-m-m-m-m-m-m-m-m-m-m-m-m-m-m-m-m-m-m-m. Yelling and anger have spiked both my angina and blood pressure. Do you have pets? Fish help me relax. No kids at home also help. I used to lock myself in the bathroom and turn on the exhaust fan and sit in the tub with the shower running over me - made me mostly calmer and lots cleaner. <g> I hope this helps. ashleyscamp@earthlink.net


Sheryl C's June 20 reply to Kay R's June 18, 2003 - Hi Kay, Is this temper problem new for you? Have you heard of a type A personality? A lot of us tend to be this type of person. I know I have had to learn to control the intensity of my negative emotions. I tend to be a perfectionist and have eased up a bit on that also. I stop, look at the situation then ask myself if it is worth dying over. Mood swings can also be part of depression or hormonal imbalance, so look at those options too.
     No matter the cause, it is better not to go too crazy over things. Blowing off steam is okay and expressing feelings can be good, as long as you really think about the consequences of what you say. A lot of us have frustrations that come out in temper sometimes. My new motto is: Don't sweat the small stuff. Sheryl C. cvprehab@hotmail.com


Jon's June 20 reply to Kay R's June 18, 2003 - Hi Kay, Drugs that affect the central nervous system can have this effect, especially if they are physically addictive. Ultram has this effect on me so I am very glad to be taking far less of it now. Erratic or inadequate sleep can be a big contributor also. Jon.


Kathy, June 20, 2003 - Hi, Well next week if all goes as planned, on Tuesday or Wednesday I will be having an aortic valve replacement. I will miss reading the board and conversing with some of you, but you all take care and I will try to return speedily, God willing! ksugars@attbi.com


Cristina L's June 20 reply to John P's June 17, 2003 - Hi, I was diagnosed with peripartum cardiomyopathy and CHF at the age of 33. My EF then was 5%. At the time of my open heart surgery, my EF was 23 to 25%. The only precaution taken was antibiotics and they took me off my baby aspirin. That was 3 years ago at the age of 36. Since that time, my EF has gone up to 39% and I'm 39 years old. It seems like my EF comes up with my age. clisa@optonline.net


Yvette's June 20 reply to Kay R's June 18, 2003 - Hi, I used to fly off the handle a bit too. When I was diagnosed with PPCM nearly 7 years ago, I had to make a choice about the way I handle stressful situations. Think of it this way - because of your condition, your time is already short so if you overreact, who are you benefiting? The answer is no one. It will only stress you out more and the added stress hormones rushing through you have an effect on your heart and it is not good.
     If you need to vent, find someone who is not a part of the situation and tell them about it. If you can't do that, write it out. Yes, you will still have your moments but they should be few and far between. Above all do not allow yourself to carry stress. Remember you are the one who will feel ultimately feel it. myyhb12@bellsouth.net


Margaret D, June 20, 2003 - Hi folks, Okay, I have some questions. I have IDCM and had an EF of 15% at diagnosis, now up 10% a year later. I am on all the usual CHF meds and am totally compliant with those as well as the 2 gm dietary sodium restriction every day.
     I would like to know exactly how people feel when they feel bad. When you "crash", what does it feel like? Do you feel okay while you're doing something, then crash after you finish your activity? Can you describe your fatigue for me? Do you have chest pressure? Do you feel much worse after you eat, even if it isn't a lot of food? If you have mild pulmonary hypertension like me, how does that figure into the equation?
     I'm just trying to correlate how I feel with the drugs and the CHF and everything. It always helps to know if others feel the way you do. mdavis10@tampabay.rr.com


Pat's June 22 reply to Margaret D's June 20, 2003 - Hi, Not all the bad days are the same. Some days I wake up feeling exhausted mentally and physically. I can't concentrate to read a book or watch a movie. I just sit. Sometimes this goes away in a few hours and I get on with my life. I find that if I sit outside, I feel better. However, I live in the rain forest -Long Island - where there has not been much sun lately. When I have done too much, I do feel some pressure in my chest. I also have days where my legs feel like lead. If I can, I try to sit on the ground and do some gardening. I can now tell when I am on the verge of being short of breath. I just stop and sit for awhile.
     Try to schedule rest periods during the day. I do errands for 3 hours and then I come home and read or go online for an hour or more. Then I may go out again or take a walk. Don't panic and be well. Pat. pat_hammond@mindspring.com


Patrick, June 22, 2003 - Hi, When I was first diagnosed with CHF, my EF was 25%. After taking Coreg (50mg BID) for 18 months my echo showed my EF was up to 70%. I titrated myself down to only 25mg BID because of the high cost. After another 18 months of the lower dose my EF dropped down to 45%.
     I could be wrong but I believe that Coreg is what brought my EF up to the high level and I believe it was because of my only taking half the dose I was supposed to be taking that caused my EF to drop so low. I was checking my blood pressure all the time and I thought that if my BP and heart rate were good I was okay taking a smaller dose, but now I know that was the wrong way to think.
     I'm going to titrate myself back up to the full dose and then I'll know for certain next time I have another echo done. If my EF goes back up, then I'll know for sure that Coreg is going to be the drug of my choice for the rest of my life. I was dumb thinking that just because my BP and heart rate were okay that everything was fine. Please do not make the same mistake I made! God bless. Patrick. NarleyHarleyGuy@webtv.net


Donna, June 22, 2003 - Hi all, Well, I got home from the hosptial on Thursday after having a cardiac cath. They did put a stent in because one artery was 93 to 95% blocked. The doctor said as he was leaving the cath lab that my heart was perfect right now! So, the next morning when he came to see how I was doing, I said I have questions. He sat for over 15 minutes explaining everything to me. He is new for me since my PCP has been treating my heart condition since my first heart attack back in February of 1999. It made me happy that he was willing to spend time explaining.
     My EF in 1999 was 35% and I have been treated for heart failure since then. My EF now is 60% + but he says that my heart did not have any muscle damage from the heart attack. Rather than a weak heart I have a stiff heart, and I suffer from diastolic dysfunction. He said to look it up on the Internet - he knows I am a web master. <g> He stopped only one med and put me on two additional meds. We had a short-lived problem with my Atkins program because he made some comment about my not having a blocked artery if I wasn't doing Atkins. After our conversation he was willing to support me with my choice of controlled carbs! That in itself is a long story. I am diabetic and had fun in the hospital as the dieticians don't believe in Atkins.
     Anyway, all went fine. My doctor says he wants a partnership with himself, my PCP, and myself so I think this will work out great. He respects my opinions and is willing to listen to me. I am feeling wonderful right now and if I can keep my risk factors under control, he thinks he can keep me feeling well with the meds I'm on and actually said he could envision me coming off my insulin in the near future!
     Kathy, good luck with your valve replacement. I will keep you in my thoughts and prayers. I hear great things about valve replacements and how great you will feel after. I am praying that everyone will feel as good as I do right now. Later, Donna in Florida. gramme@cfl.rr.com


Betty's June 22 reply to Shelly's June 12, 2003 - Hi Shelly, We need to question what your EF is and how healthy you are. What if Shelly's EF is up to 55 or 60%? What about diet control and life control? She may not be your average person so let's get some more info. Shelly, are you near a major medical center. Do you know how to control your disease and how do you feel day to day. What do you do to prevent CHF? These are things we must know to even begin to give you advice! bettylaird@earthlink.net


Betty, June 22, 2003 - Hi, I just can't believe there are still people who think they can do salt. No way! Salt is out of the question for us, not only with CHF but for anyone with heart problems. It's like telling a child they can't have candy -you decide, you make that decision. I refuse to give my grandchildren bottled Ranch, etc,..., or in a restaurant. No thank you. Maybe too much salt is why there are more being diagnosed with CHF. I got sick with bronchitis and pneumonia and came home and opened up huge cans of chicken broth and inhaled that for a couple of days. I blew up! Use homemade broth and soup. It is totally a state of mind.
     My family and all our friends enjoy my cooking, which has no salt. If you use fresh spices and fresh herbs, they can give you better tasting food than you can imagine. I cannot stand the taste of salt of anymore. Many restaurants will make your food for you salt free if you ask. Take care and let's all get salt free. Betty. bettylaird@earthlink.net


John P's June 22 reply to Yvette's June 20, 2003 - Hi Yvette, In your post you say that our time is already short. Is this necessarily true? If someone gets his or her EF back to around 50%, can't one have a relatively long life? My cardiologist tells me there will be some excellent news regarding the benefits of Coreg coming out soon. jp774@aol.com


John H, June 22, 2003 - Hi all, Please, I need help. I've had CHF for 4 months now. My doctor has me on 40mg Lasix 3 times a day. The Lasix makes me feel terrible, but if I don't take it, my lungs fill up with fluid. I've read The Manual twice. Yesterday I took my 40mg Lasix in the morning, 20mg at lunch, and 40mg at dinner, but by 4: AM, I was gurgling and wheezing as if I didn't take it at all. Can 20mg really make that much of a difference? I ask because I also had a greasy dinner, so was it the Lasix or the dinner? air360@cfl.rr.com


Jon's June 22 reply to John H's June 22, 2003 - Hi John, I don't know. I do know the following: Lasix cannot give proper benefit if

  1. your diet is not low sodium - not kind of low sodium - but truly low sodium every day,
  2. you are not on all the other meds you should be taking,
  3. your other meds are not at proper doses for you,
  4. you don't sleep in an appropriate position - see www.chfpatients.com/faq/pillows.htm,
  5. you don't exercise or be physically active as much as your heart allows.

If you follow the whole program - the official treatment guidelines - including using a CHF specialist, you will get far more benefit. I am not saying you are not doing so; I am just pointing out that it is necessary to follow it all, all the time. Jon.


Nan, June 22, 2003 - Hi, Has anyone experienced low-grade fever when doses of metoprolol were increased? I think this has happened to my husband twice, but the doctor tells us that is not possible. Many thanks and God bless. nrskahill@hotmail.com


Natalia's June 23 reply to John H's June 22, 2003 - Hi John, My experience with Lasix tablets was pathetic. Not only was my mouth extremely dry and the skin inside cracking, but despite my thirst I could barely swallow more than a tiny sip of fluid at a time. I was literally repulsed by drinking even though I was desperately thirsty. I dreamt of bottles of water gushing down my throat and diving into cool, clear pools or the ocean.
     I also had trouble breathing. I was on 20mg a day of Lasix before going into the hospital. It did not get any fluid off me. I barely peed. Then again, I barely drank. I did not eat much either, and salt intake was zero to none. When I was in the hospital, IV Lasix helped me a lot. The doctor said my fluid buildup had affected my liver so badly that it could not metabolize the pill.
     I do not have heart failure now because I have a new heart through a heart transplant. While waiting, I had an episode where my breathing became very labored and it was not due to fluid inside my lungs, but rather in the chest cavity directly under my lungs. I cannot recall what the term for this is, but it takes a long time to develop and ends up creating pressure against your lung. It is very difficult to get the fluid out with diuretics alone. In my case, the transplant team tapped my back and drained over 3 liters of fluid. However, the rounding cardiologist told me that if I was not on the waiting list for a heart, he would have preferred to just increase lasix or add another diuretic or catalytic agent.
     I guess my advice is to urge your doctor to order a chest x-ray to determine the amount of fluid in there, if any. Changes in symptoms due to meds' dose is a doctor's area of expertise. I am sorry I cannot advise you more specifically. Natalia. Natalialama@cs.com


Tom S' June 24 reply to Natalia's June 23, 2003 - Hi, Your narrative of your Lasix experience read like a narrative of T.H. Lawrence in the Arabian dessert, but it reminds me of just how individual each experience with CHF and drugs really is. Perhaps part of the problem with a web site such is that people do come here in search of a "one size fits all" solution or answer when the real answers are as individual as the person themselves.
     I have been a participant in this forum for as long as I can remember it being available on the Internet and I keep seeing pretty much the same problems and questions. Nothing about any disease can be predicted, but there are some pretty standard courses of treatment. Today the best meds available for those of us who suffer from deterioration or weakening of the human heart happen to include Lasix. What would life be for the average CHF sufferer without Lasix? I for one have tried it and come to realize pretty fast just how important my 320mg a day is to my staying vertical and breathing.
     Perhaps I am one of those lucky souls who has managed to adapt to my meds without too much difficulty. Perhaps they do not affect me as they do others. Again this whole thing is very personal and individual, and there are no broad brush medical strokes that can paint the entire picture for all who live and labor with it. bigheart@muchomail.com


Mike, June 24, 2003 - Hi, I'm a 33 year old male in good shape and health. I was diagnosed with IDCM and CHF this year after a routine physical exam. I have no history of health problems, almost no symptoms, am taking the prescribed medications, haved limited-to-no side effects, and feel healthy. I take digoxin and am titrating up to maximum doses on lisinopril and Coreg. I also take Coumadin and amiodarone (Cordarone) in anticipation of cardioversion for a-fib. I have found only limited information on younger people with similar characteristics and treatment results. I am curious to hear from others in the same situation. md20008@aol.com


Steve, June 24, 2003 - Hello, I spent 5 days in the hospital a couple of weeks ago because of blood pressure induced CHF. I also sustained kidney damage. My drugs are 25mg Coreg twice a day, 10mg Norvasc twice a day, 50mg Captopril three times a day, and 30mg Lasix once a day if I gain 2 to 3 lbs. I'm walking 30 minutes a day, but some days are easier than others, and I can be short of breath at times.
     I had a systolic blood pressure of 265 when I went to the ER to report bloated testes. The doctor explained to me that water was being stored all over my body because of heart failure - in my stomach, lungs, ankles, and testes. I just got the bill for $28,000 for only 5 days! Thank goodness my insurance covers it all.
     Any advice for someone like me? Oh, I'm 50 years old. steve.wimer@verizon.net


David W, June 25, 2003 - Hi, I just got a letter today from Social Security informing me they are discontinuing my SSD after 2 years. They think I am well enough to work. My last check will be in August. I guess you don't get 6 months anymore. I don't see how I can work, but I guess if your EF goes up to 35% they think you are okay. I will appeal but I doubt it will help. I guess I will go job hunting tommorrow, if anyone will hire me after not working for almost 3 years.
     It is funny you can't collect SSD for the first 6 months, but they can kick you out and stop checks and Medicare after 2 months. I do have another long term disability check I get from Hartford Insurance. I bet they will try to kick me off also. Thats okay - somehow God will provide. He always does, although sometimes it is hard to understand.
     I feel better now that I have vented. Maybe I can get my weight loss surgery done before I lose my Medicare. I hope everybody else is having a better day than I am. God bless, everyone. davybwilson@webtv.net


Kathy, June 25, 2003 - Hi gang, What would be an acceptable reason for my doctor to not have me at target doses for my meds? I have been at 12.5mg BID of Coreg for about 10 months, 50mg Cozaar for a month, and 80mg Lasix for 6 months. He took me off Lotensin and Digitex. I see him again in about 3 weeks and I want to compare his answer. Thanks. kathyh@linkny.com


Ann Lau, June 25, 2003 - Hi, Does anybody have experience with adriamycin-induced cardiomyopathy? I am a lymphoma patient in remission, who has just been diagnosed. Help. annlau@davtv.com
 
Jon's note: Also check the Me Too pages


Ben B's June 26 reply to David's June 25, 2003 - Hi, I was in somewhat the same predicament as you. My EF went up from 10% to about 40 or 45%. Both SSD and my private insurer were working to fire me. On top of that, my doctor told me I was probably capable of working. The truth is, they were all right because I did get a job after not working for 4 years (I know I was very lucky) and I have been working for about 4 months now. The truth is, disability is for disabled people - not people who might become disabled again, or who can't find a job.
     However, all that said, if I were you, I would appeal. That is what I did and they relented and gave me a 2-year extension on the SSD making it pretty clear that if I didn't have a big turn for the negative, I'd pretty much be sure of losing it. Now I'm on a trial work period, and at least I have a safety net, especially as far as health insurance is concerned. UNUM (my private insurer) wasn't so generous. They stopped paying me immediately upon my getting a job, and just today I got notice they are closing my file. That wasn't quite as important as SSD because of the Medicare.
     Even if you lose your appeal, they will be forced to keep paying you, and the worst thing that could probably happen is that you will have to pay them back. That way you'll have some income while you look for a job, if that is what you are going to do. At least that is how I think it works. It can't hurt to talk to them, or maybe even a lawyer. It is at least worth looking into. Good luck. bdbrinkman@juno.com


Natalie K's June 26 reply to Kathy H's June 25, 2003 - Hi, My CHF guy doesn't want me on any more Coreg (12.5mg BID) because my blood pressure is hanging low. mcnat45@yahoo.com


Denise, June 26, 2003 - Hi, I was wondering if anyone here has severe rheumatoid arthritis? I had blood clots hit both my heart and lungs, and I thought my life was over at 38 years old. I came home last week after 2 weeks in a hospital. Now my rheumatoid doc says that he can't do anything to help me as long as I am on Coumadin. I am so depressed because my arthiritis has been so bad and just started to feel a little better, now I can tell it is getting worse. Has anyone out there been through this?
     I can't drive because of my hands with arthritis, can't turn my head, swell very badly, and virtually had just started planting flowers to lift my spirits and now I'm scared to go down the steps to go outside. I am desperate for any advice. Thanks. Randydenis@aol.com


Paul D's June 26 reply to Ann L's June 25, 2003 - Hi Ann, There are an increasing number of us with cardiomyopathy related to cancer treatment. I am a 20+ year survivor of lymphoma, who had both adriamycin and chest radiation in the early 1980s. My CHF symptoms started last year.
     This site is a terrific place to learn about your heart and what you need to do to manage your health around that. Read all you can here, particularly The Manual. Let me also suggest you check out the mailing lists at www.acor.org. There is an active one in the survivor category - LT-SURVIVORS - where there is a lot of discussion about what health effects you should be aware of after treatment. Personally, I think the readers of that list know more than doctors do, at this point. Feel free to e-mail me directly if you'd like. therealpauld@netscape.net


Cat's June 26 reply to David W's June 25, 2003 - Hi David, If you haven't done so already, you should appeal immediately. If you appeal within 10 days after being notified that your benefits are being ceased, you can ask that your benefits continue while you appeal the decision cutting off your benefits. It may be wise to consult a lawyer that specializes is SSD since they know the correct wording to use and ways of working within the system. Good luck, and do keep us posted. lafsalot2000@yahoo.com


Michael's June 26 reply to Ann L's June 25, 2003 - Hi Ann, I suppose I am in the same boat with you. I had lymphoma and I was treated with adriamycin in 1988. Then I had a relapse in 1995 and I did an aulolugus bone transplant in London. Since then I am in remission. I was diagnosed with cardiomyopathy last year and a cardiologist says that a possible cause is the adriamycin. My cardiomyopathy is almost symptom-free. Since then and so far, my response to treatment is very satisfactory and doctors claim that my ejection fraction is almost 50%. micnhgavriel@cytanet.com.cy


Sandy, June 26, 2003 - Hi, I was diagnosed with IDCM in August of 2002 at the age of 52. I also have left bundle bundle block. I was a very active person that ran 4 miles a day 5 days a week and had zero artery blockage with normal blood pressure. I am on 12-1/2mg Coreg, Aldactone (spironolactone), Altace, Coumadin, Coenzyme Q10, aspirin and a multi-vitamin.
     In January I had an pacemaker implanted but the third lead didn't attach. An attempt was made to go back in and attach it, but the vein had clotted and the surgery was abandoned. I had surgery again 3 weeks ago using the DaVinci machine (robot-assisted surgery). The doctor went in through my side, collapsed my lung, and attached the lead directly to my heart. It was only a 2-night hospital stay.
     Today I had an echocardiogram done. In Augst my EF was 10 to 15% and today it was 25% and my heart has shrunk from over 7 cm to 5 cm. I am elated! I didn't expect results so quickly from the surgery but I feel so much better. I visit this site often and just wanted to let everyone know there is hope. God bless. tessandboo@yahoo.com


Michelle A, June 26, 2003 - Hi, Does anyone know what the RVEF numbers are, or where I can find them? They weren't on the EF page on this site and I can't find them anywhere. I have congenital heart disease, with systolic RV dysfunction, which is the same as systolic LV dysfunction in people with normal anatomy. I just had a cardiac MRI to finally determine my RVEF, because they can't do it by echo, and I want to know the normal RVEF numbers so I'll know what my results mean. All I know right now is that they will compare my numbers with the numbers for a normal RV. I don't see my cardiologist and get the MRI results until October. The waiting is driving me crazy already, and I just had the test on Tuesday! mianders@hotmail.com


Jon's June 26 reply to Michelle A's June 26, 2003 - Hi Michelle, Don't go crazy over this - there are plenty of bigger reasons to go nuts! <g> The normal RVEF is 5 to 10% less than LVEF so 45% is okay. Jon.


Angie, June 26, 2003 - Hi, Has anyone found a good low-sodium cheese yet? Heluva doesn't have it any more. I did call them and they said they are looking for an alternative so I told them about American Heritage Cheese (which isn't available to consumers directly). Help! We're almost out of our old Heluva, which we shredded and froze! rebecca_a2j@hotmail.com


Juliah's June 26 reply to John H's June 17, 2003 - Hi John, I also have ulcerative colitis and am facing surgery. Feel free to e-mail me. Love, Juliah. Juliahhenry@msn.com


Robert S, June 26, 2003 - Hi, These highs and lows of CHF are starting to bug me, probably because my diagnosis is still so recent (9 months) compared to many of you. When I was first admitted to the hospital and put in the CCU, back when they were talking transplant, I had an EF of 15%, BNP of 545, and my LV was 64mm. Now, my BNP is down to 18, my Vo2Max is "stellar" (35, and I am 37 and currently overweight, so they tell me to lose weight so it can go up), and my LV is only 51mm. Still, my EF is only 30%. My doc thinks I can go off Lasix at this point (he gave me a fancy medical word to describe someone who isn't holding excess fluids), but he has warned me to be careful about fluids and sodium while I do this.
     My confusion? I seem to be doing so much better according to the numbers, but I don't know why my EF isn't going up as much as the numbers indicate to me. That's the number - not the BNP - that I really want to go up! Besides that, my doc was really excited that my BNP is so low. I guess it's a good sign, but does it mean that much, really? I mean, I trust my docs; it's a big research institition and I would put them against any docs but is this adoration of BNP advisable? Jon, I know you are suspicious of this.
     Yesterday, my nurse talked to me for a long time and ansswered lots of questions for me: No mitral valve leakage, normal wall thickness, good quality of life with lower EF, etc,..., but I still feel not quite right and I can't help thinking that this feeling is associated with my low EF and perhaps my psychosomatic responses to that number. rsterner@ucla.edu


Donna V, June 26, 2003 - Hi, I was admitted to the hospital and diagnosed with cardiomyopathy and CHF 2 months ago. My EF was 15%. My doctor is titrating Coreg. The hospital's Lasix weight loss plan removed 30 lbs of fluid from me. I had previously tried to lose weight but could not. Now I know why.
     My muscles are shot and my muscles hurt, especially around my thighs. I started rehab at a snail's pace 3 weeks ago so my muscles continue to hurt. Of course, I drop everything. Is this the new normal for this disease or do these muscles eventually gain some strength and not hurt so much? No one can tell me. This is the best sight I've found for actually living with this thing and common sense. I am grateful for the meds. The low-sodium diet and limited fluid intake are not a problem unless I want to eat out, and for being able to get myself to rehab. However, getting out of bed, my car or a chair certainly is difficult. My potassium levels were okay. I can do it but not easily. Is there hope? Donna V. dmvditty@aol.com
 
Jon's note: If you take a cholesterol-lowering drug, ask your doctor to take you off it immediately and see what happens


Noel, June 27, 2003 - Dear CHFers, I have noted my laboratory results for the last 6 months have shown a tendency toward anemia with low RBC, HGb,and HCT. My doctors choose not to address this problem. I have recently read of studies via this site that indicate EF, mortality, and SOB may be improved by treatment with a drug and IV iron. My HBA1c results for the last several months have also been too high since I can't walk much and my 3 oral diabetic meds seem to leave me only diet to control my glucose. I read in a home remedy book that elevated HBA1c levels may tie up some hemoglobin and reduce its oxygen-carrying capacity. Has anyone had any treatment that aimed at improving red blood cell count, hemoglobin-hematocrit levels to improve EF, shortness of breath, etc? Thanks and may God bless all that tune in. noel-palmer1@juno.com


Tracey C's June 27 reply to Angie's June 26, 2003 - Hi Angie, My market (Ralph's) orders American Heritage and stocks it regularly now. They also said they would order it just for me if it didn't sell well, but fortunately, it has been flying off the shelf. Ralph's is a huge chain, so maybe try one of your bigger chains and see if they'll order it for you. It's great cheese, much better than Hellava, similar to the no-salt Tillamook. It's good because there's no potassium chloride. Good luck.
     You can shred and freeze cheese? Does it melt the same when you do that? Thanks. 2tcollins@cox.net


Margaret D's June 27 reply to Robert S' June 26, 2003 - Hi Robert, I am jealous of your numbers! After only 9 months, it is a huge deal to have such improvements. Having no mitral regurgitation is very important and your Vo2Max is really good. Look at it this way - your EF has actually doubled! Remember also that there is a +/- 8% margin of error on an echo so your EF could have gone from 15 to 40%!
     The bottom line is how you feel, not what your EF is. Maybe you're right about the psychological effect of the EF. I think your BNP means that your CHF is well controlled and that would be why your doctor is so happy. mdavis10@tampabay.rr.com


Tom S' June 27 reply to Angie's June 26, 2003 - Hi, Just out of curiosity and a desire to do something more productive than be a pimple on a computer screen, I decided to start making my own cheese. This solves the sodium problem real quickly. The only problem with most cheeses is salt - lots of it - because it is key to the cheese making process.
     I have found a lot of recipes on the Net for making various types of cheeses. Among the easiest are a yogurt cheese (which I make from half and half, so it is almost like cream cheese), Ricotta, and cottage cheese, plus I also make flavored yogurts for the wife and kiddies. My next project will be a blue cheese and then ultimately cheddar. So far I have managed to make all my cheeses in containers I already have around the house so I am out no money at all. Yogurt is really simple because a small container of plain yogurt with live culture is all I need to make a gallon of yogurt.
     Anyway, it is just a thought if you are really desperate for low-sodium cheeses. Of course, if you want an aged cheddar or other cheese, you would have to wait 6 months to a year so that is a bit discouraging to think about. bigheart@muchomail.com


Joyce, June 27, 2003 - Hi, My EF today was 65% to 70% but my doctor told me the only heart damage I have is a thickened heart. How serious is this? He had an emergency and had to leave so I did not have a chance to talk with him. Of course I was happy with the EF numbers, but concerned about a thick heart. My EF has been as low as 15%. Currently my only problem with CHF is tiredness. I take all the usual meds, including Coreg. Do you think the Coreg is making me so tired? I will not stop Coreg because I think this is what has improved my EF, but what is a thickened heart? joie6800@aol.com


Natalia, June 27, 2003 - Hi, I buy Mozzarella and Lorraine cheese for low-sodium cheese. Alpine Lace makes a variety of low-sodium cheeses including Muenster, chedder, Swiss, and provolone. Look for it in your local grocer's deli. natalialama@cs.com


Dale, June 28, 2003 - Hi, My dad has been struggling with nausea and a loss of appetite for about a month now. The doctor has since taken him off every medicine except Lasix. Does this seem normal? I thought someone with CHF should always be on a beta-blocker or ACE inhibitor. The doc says the beta-blocker lowers his heart rate too much. They haven't had him consistently on an ACE inhibitor ever.
     Has anyone else gone through this same situation? Should we be really worried about the nausea? He is still retaining fluid with these symptoms - is this an emergency? Could too much salt cause these problems? What should we ask the doc? Thanks and God bless, Dale. homecapitaldale@hotmail.com


Jon's June 28 reply to Dale's June 28, 2003 - Hi Dale, I don't know why he is not on an ACE inhibitor but anytime a CHFer is not being treated according to the official treatment guidelines, specific reasons are required from the doctors involved - reasons that satisfy all your questions. Why a CHFer with symptoms would only be taking Lasix is beyond me. As to salt intake, I cannot say it any more clearly than I do in The Manual and everywhere else - low sodium intake is simply critical. Period. Jon.


Dale, June 28, 2003 - Hi, What could be causing this nausea? My dad said if it wasn't for the nausea he would be feeling pretty good. What are things that cause it? I've read through The Manual and I keep harping on my dad to make sure he keeps his salt intake low, but some days he cheats. Could that be part of why he feels bad? We are going to ask the doctor when the doc comes back in town why he is not on an ACE inhibitor. Thanks for the feedback and God bless, Dale. Homecapitaldale@hotmail.com


Jon, June 28, 2003 - Hi everyone, I have a new page up called The New Page. It is self-explanatory and may help new information be a bit easier to find around here. Jon.


John H, June 28, 2003 - Hi, Does over exertion make your ICD shock you? I was vacuuming my truck in the sun for just 10 minutes but I got a little lightheaded so I drove home from the car wash. It only took 2 minutes to get home - it's only 4 blocks. When I got home I got out of the truck and walked next door to talk to my neighbor. As I started to tell him how I was feeling, my pacemaker/ICD shocked me. Four hours later in the ER, my cardiologist could not say for sure that being bent over vacuuming my truck had anything to do with it. He didn't dismiss it but he's not certain that was why it went off for sure. Does anybody have any ideas? I personally think I over exerted and then when I jumped out of my truck and started telling my story, that got me more excited and that may have triggered an irregular heartbeat, then pow! air360@cfl.rr.com


Catherine's June 28 reply to John P's June 16, 2003 - Hi John, I tried to e-mail this to you but it came back so I am posting it and hope others who've already heard my story will forgive me repeating it for your sake.
     I am 56 and was in excellent health, or so I thought. I was not overweight, worked out regularly, had good cholesterol levels, etc. I had major abdominal surgery this past January and survived. Don't be afraid - I made it and so will you. Here is my story. I hope it comforts you and makes you realize that you too, have the strength to get through your trials.
     Last August I lost my job because of a pinched nerve in my buttock that made sitting intolerable. I still have difficulty sitting. One month later, on a trip to get help with my sitting problem, I collapsed and went by ambulance to Mayo where I learned to my horror that I have idiopathic cardiomyopathy. My EF was 30 to 35% and is now in the 40s. They put me on heart drugs. I thought I'd received a death sentence and went into a deep depression that didn't lift until March.
     In December, I suddenly got severe cramps and bloody stool and went to emergency again, where tests in the hospital showed I had a rare, life-threatening condition in which 2 of the 3 main arteries that provide blood to the intestine were being strangled by a ligament and some nerves (arcuate ligament compression syndrome). It's like angina, only the major organ affected is the intestine, not the heart. Basically, my intestine was eroding from the inside out due to lack of blood and oxygen. I could've ended up with a colostomy had it not been caught or I could have died. They also found that I have an aneurysm in my right kidney, which if it bursts, could kill me. I go back in July to get the aneurysm measured.
     In January, out of the blue, I also developed lumps in the palm of my right hand that could cause the fingers to claw (Dupuytren's syndrome). Anyway, upon discovering my intestinal problem, they stopped all my heart drugs, which had lowered my blood pressure and (fortunately!) exacerbated the intestinal condition so that it was diagnosed.
     January third I had the surgery. Recovery was awful because the surgeon had to move my ribs aside and did that hurt?! It took 2 months to begin to feel normal and I still hurt daily, but it's bearable. I am back on heart drugs again. The week before my surgery I was a basket case, John. I was terrified. I wept constantly, I stopped eating, and couldn't sleep. I was afraid I would die. I still am. I worry and wonder when and if my cardiomyopathy will progress, and whether this aneurysm will suddenly burst. Survival for burst aneurysms is 80 to 90% but they don't like to fix them until they get to a certain size because the surgical process itself carries some risk. The surgeon said that if the entire section of artery is weak, the only way to fix it will be another major surgery on the other side of my abdomen. I want to jump out of a window at the thought! Hopefully, if they need to fix it, it will be the kind of aneurysm that is fixable through the femoral artery in my groin.
     Anyway, somehow John, I made it through the abdominal surgery. So will you. If I need another surgery, somehow I'll make it through that too. Your EF is similar to mine, so I have faith that your heart will perform fine during and immediately after your surgery. My cardiologist said my heart did great, even though I freaked out after surgery because without my heart drugs, PVCs started again and I could feel my heart pounding erratically while in the hospital bed and this always disturbs me.
     Shakespeare wrote, "Cowards did many times before their death; the valiant never taste of death but once. Of all the wonders that I yet have seen, it seems to me most strange that men should fear, seeing that death, a necessary end, will come when it will come." This saying comforts me and makes me want to be brave so I don't die a million deaths a day worrying about my future. I hope it helps you, too. Be brave, John. You'll make it. God bless, and let us know how you are after it's all over. Catherine. gardengirl47@kc.rr.com


Natalia's June 28 reply to Dale's June 28, 2003 - Hi Dale, Your dad's situation sounds like me when I was sick. The only thing that helped my nausea and lack of appetite was IV Lasix in the hospital. Fluid retention in my abdominal area caused my liver to grow to triple its size in an effort to metabolize my input (including meds). However, the liver failed to do this and even the Lasix was not helping because it was not metabolized. My doctors also gave me runarounds, so I went for a second opinion. The new doctors put me in the hospital right away and (sorry if this scares you) they told me that I was so wasted physically by then that if I had waited about 5 more days, I would have died.
     My suggestion is that just cuz his nametag reads MD don't mean he is God. Good luck with your daddy, Natalia. natalialama@cs.com


Nancy's June 30 reply to Denise's June 26, 2003 - Hi Denise, I also have rheumatoid arthritis but I am being treated very agressively, I believe. I don't take Coumadin. I do take prednisone and was tapered off it a few months ago but I had to go back on it due to the intense pain that reoccured after stopping it. I also take hydroxychloroquine and naproxen. Were you taking Methotrexate? That's a drug that I'm given by my rheumatologist. I understand that NSAIDs are not good for those of us with CHF but I don't know how to live without them and still be able to move. Maybe you can talk to both of them and they can discuss your condition to find a solution that will help. I'm about 90% better with my RA than before I was diagnosed and treated. Good luck and my prayers are with you. Nancy. ns1@alltel.net


Sheryl C's June 30 reply to Dale's June 28, 2003 - Hi Dale, It sounds like you need a second opinion. Unless a person is having symptoms with low blood pressure like passing out or severe dizziness upon standing up, they will usually grow to tolerate a lower than normal blood pressure. With the ACE inhibitor and beta-blocker, the body will slowly adjust it's blood pressure and it will rise. How low his BP can go should be discussed with his doctor, as well as the symptoms he should worry about. Sheryl C. cvprehab@hotmail.com


Barbara H, June 30, 2003 - Hi, My dad, who has CHF, is being discharged from the hospital tomorrow after a bout of pneumonia. I'm wondering if anyone has any suggestions for the aftercare. If anyone even just wishes to share their experience with it, that would be greatly appreciated too. Barbara. BarbHutter@yahoo.com


Dennis D's June 30 reply to Donna V's June 26, 2003 - Howdy Donna V, I have experienced severe muscle pain as well. It got to be so bad that my wife had to lift me up off the toilet - too much info, I know! I was only 30 years old at the time! About 2 months ago I stopped taking Lipitor and added Coenzyme Q10. I now feel like a million bucks! If you are taking a statin like Liptor or Pravastatin, make sure you do your research. I really think there are a lot of unanswered questions relating to statins and muscle damage so be careful. There are some awesome links on this site that deal with statins, so check them out. I also recommend a bit of yoga. It really loosens me up and helps get rid of some stress. dennis.rena@telusplanet.net


Dennis D, June 30, 2003 - Hi all, I read this forum every day but I have only posted a few messages so most of you don't know me. I just wanted to let my fellow CHFers know that anything is possible. After going through cardiac arrest, ARDS, severe CHF symptoms, and some lovely side effects from meds, my wife and I are now expecting our first baby! I hope the kid likes low-sodium cooking with lots of veggies cuz that's all we have around our place! dennis.rena@telusplanet.net


Rob, June 30, 2003 - Hi all, I hope you're all doing well. I'm just calling back past Jon's Place to read a bit and touch base. I was first diagnosed with CHF after a mild stroke back in December of 1999. I found this web site in one of its incarnations early in 2000.
     It's funny how sometimes a little thing upsets our health. At the moment I feel like crap. My CHF has been well under control for 2 years now. Dilatrend (Coreg), Coversyl (Perondopril), Aldactone (Spironalactone) and Lipitor are my friends. I guess I should get to the point, huh?
     My neck "went out" yesterday morning, so I've been taking Nurofen Plus (Ibuprofen and codeine) for a day and a bit now. My doc told me I was taking the right meds for my neck, and he's the PCP who manages my CHF (for which, read handing out scripts and occasionally checking pulse and blood pressure), so I trusted him. Tonight I felt terrible so I read the box and Nurofen Plus is contraindicated for CHF patients! I checked with the hospital a few minutes ago and they said I'd be fine, but to stop taking the Nurofen Plus immediately.
     It's a fine line between health and sickness isn't it? Good luck to you all and once again thanks to Jon for creating this refuge for we CHFers. Tonight reminded me that I'm not someone who had CHF, I'm someone who has CHF. Cheers and good luck to you all. Thanks for being here for me! Rob in Adelaide, Australia. robdick@somethingabout.net


Joseph P's June 30 reply to John H's June 28, 2003 - Hi John, I have an ICD and so far I have not been zapped for over exertion. I do feel like a diesel motor with a governor. My ICD has limits set as yours most probably does also. I can only go so fast and that's it but I do have a-fib doing nothing at all. Good luck and God bless. Joseph P. joeandol@shawneelink.net


Catherine, June 30, 2003 - Hi, I know NSAIDs are bad for CHFers, but does anyone know why? How exactly do they cause us to worsen? What is it that they do to us to create these relapses? Just wondering, Catherine. gardengirl47@kc.rr.com


Jack D, June 30, 2003 - Hi, On June 26th I went to the Drivers' License Office to get my license renewed. It expires July 11th. I took my number and waited. I walked up to the window using my walker. The clerk looked me up and down and said, "Why are you using a walker?" - as if he had any business even asking.
     Of course I answered politely because there are signs all over telling you it is a felony to harrass a clerk. I said, "Because I can't walk without it." He called a woman over and they conferred. I have to insert this thought here: "He never entered anything into the computer."
     After the secret conversation, he got a pad of pre-printed forms off of the shelf, tore one off, filled in some info and gave it to me. He said, "Take this to your doctor and bring it back." When I got home I read it. At the top it says "Certificate of Physical Examination."
     There is a statement in the middle of the form that says: "This department has received information that this individual has had a medical condition that resulted in a loss of consciousness/control or impaired judgment within the last six months. In order to arrive at a decision regarding his/her ability to operate a motor vehicle, please answer the following..."
     Now this is a blatant lie. By submitting this to my doctor and returning it to the state I have legally validated that statement and had it entered into my permanent records. Has anything like this happened to anybody else? maddjak@hotmail.com


Jon's June 30 reply to Catherine's June 30, 2003 - Hi Catherine, As I understand it - and I have not extensively researched this - NSAIDs can raise blood pressure, probably by increasing systemic vascular resistance. They inhibit prostanoids/prostaglandins/prostacyclin(e)s produced in the kidney. This causes salt and water retention, and possibly kidney impairment and reduced blood flow in the kidneys in some CHF patients. NSAIDs may also reduce the effectiveness of some blood pressure-lowering drugs, including ACE inhibitors and diuretics.
     In 1998, The Journal of Rheumatology reported that an estimated 107,000 Americans with arthritis are hospitalized yearly for gastrointestinal complications of NSAIDs and that 16,500 die from such complications. This was the 15th most common cause of death in the United States in 1998. CHFers don't need the GI problems or the possible need for even more meds that such problems may cause.
     Finally, there is some evidence that newer selective NSAIDs like Vioxx may cause increased risk of cardiac events like heart attack. Jon.


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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