John H 7-1 seek metixil experiences
Joanne R's 7-1 reply to Dennis's 6-30 diet
Cristina L's 7-1 reply to Jon's 7-1 what do we take for pain?
Jon's 7-1 reply to Cristina L's 7-1 I take Ultram (tramadol)
Kathy 7-1 seek low sodium resources
Hal 7-2 what can I do about dry mouth?
Monica 7-2 am I getting too much sun?
June Johnson 7-2 seek CHF doc in Pittsburgh
Walter K 7-2 update - some things to remember
Karen F's 7-2 reply to June Johnson's 7-2 CHF docs in your area
Tom S' 7-2 reply to Hal's 7-2 dry mouth ideas
Cat's 7-3 reply to Hal's 7-2 dry mouth ideas
John H 7-4 seek experiences with PVC meds
Scott B's 7-4 reply to Jack D's 6-30 drivers license question
Len's 7-4 reply to John H's 7-1 my mexitil experience
John H 7-4 what about this adult stem cell therapy?
Jon's 7-4 reply to John H's 7-4 adult stem cell therapy?
Susan B 7-4 thanks, pacemaker experience
Tom S' 7-4 reply to Scott Brown's 7-4 driver's license experience
Maggie R's 7-5 reply to Tom S' 7-4 drivers' licensing & heart failure
Joseph P 7-5 dry mouth precautions
Pat's 7-7 reply to Joseph P's 7-5 dry mouth precautions
Sharon 7-8 Phil died last week
Tom S' 7-8 reply to Joseph P's 7-5 mouth and gum health experience
Doris R 7-8 need to take Coreg with food
Amir Raza 7-8 seek advice and info on USA treatment
Jim 7-9 seek CHF doc in Indiana
Jan 7-9 what causes the dental problems?
Monica's 7-9 reply to Doris' 7-8 taking Coreg without food
Kate 7-9 seek pacemaker advice
Katherine H 7-10 pacemaker and ICD resource
Maria 7-10 seek CHFers' surgery experiences
Dorothy 7-10 success stories can and do happen
Giorg's 7-10 reply to Doris R's 7-8 methods for taking Coreg
Henry S 7-10 update, it's been awhile
Abigail P 7-10 should I pursue heart transplant?
Walter K 7-11 med that may help dry mouth
Don C's 7-11 reply to Abigail P's 7-10 heart transplant experience
Jacky's 7-12 reply to Jon's 7-11 heart class and BNP confusion
Jon's 7-12 reply to Jacky's 7-12 heart class and BNP
Natalia's 7-12 reply to Abigail P's 7-10 my transplant experience
Sheryl C 7-12 diabetic drugs and heart failure
Brian 7-13 there is good information here
Norma 7-13 seek macular degeneration experiences
Greta 7-13 intro & more, what are NSAIDS?
Noel 7-15 seek pulmonary hypertension experiences
Jerald P's 7-15 reply to Christina L's 7-1 pain relief dilemmas
Valerie 7-15 what should I expect down the road?
John H, July 1, 2003 - Hi, I've looked it up online but I want patients' opinions on Mexitil. If anyone is on it or knows if it's a good drug for us CHFers, please let me know. I start that drug today. My doctors are not sure how I'll react to it so I wanted some feed back, I'm very nervous about starting any new drug. email@example.com
Joanne R's July 1 reply to Dennis's June 30, 2003 - Hi, Congratulations and best wishes! I believe starting out on a low-sodium, high-plant way of life is among the best things you can offer your child. He will learn to love the things that are good for health that way. Be well, Joanne. firstname.lastname@example.org
Cristina L's July 1 reply to Jon's July 1, 2003 - Hi Jon, I agree with you about NSAIDs, but what else is a person supposed to take for pain, without having a million side effects? Tylenol just doesn't cut it. My doctor will not let me take Vioxx either. I would like to know what others take for pain. I have a bad back from scoliosis. email@example.com
Jon's July 1 reply to Cristina L's July 1, 2003 - Hi Cristina, I agree about Tylenol. I take Ultram for chronic pain. It is reasonably effective and once past the first dose or two, side effects are fairly rare. Ask your doctor about it. Jon.
Kathy, July 1, 2003 - Hi, It's so nice to write a post saying I feel so much better. The nausea is gone. I am one of those lucky people that had severe nausea from digitalis, without ever having too much dig in my blood. Go figure. I felt well enough last weekend to actually hike again, albeit a short distance; and I swam!
I'm still working on getting the salt out. I haven't had a Ramen noodle since maybe last October. You all convinced me. I seem to do great for 4 to 5 days then almost binge on salt and I feel the effects immediately.
What are some of your favorite cookbooks for low sodium cooking? I have a very nice collection of regular cookbooks, now just useful as reading material and paperweights, but only 2 specifically for low sodium. Oh, and if you have a favorite that's good for diabetes as well, I'd be thrilled to hear about it. firstname.lastname@example.org
Hal, July 2, 2003 - Hi everyone, I thought I'd check in and say howdy. I hope all are well to enjoy the summer. It is absolutely perfect weather in this absurdly priced and deadly dull backwater I currently reside in. Lovely days help my attitude enormously. My new doc has doubled my dose of Coreg to 13.5mg a day. When my daily drug cocktail gets fiddled with, there is usually a little discomfort for a month until I level off, generally just an all-over achey feeling and stomach cramps.
This time however I am experiencing "dry mouth" like you can't imagine. It doesn't matter if I'm awake or asleep but the inside of my mouth turns really nasty for no reason at all. Does anyone out there have this annoying problem? Ya reckon it might go away eventually? If it doesn't, I recommend you all buy stock in wild cherry Lifesavers. Be well. email@example.com
Monica, July 2, 2003 - Hi, I have been taking 25mg Coreg twice a day since October of last year. In 1999 I had a massive heart attack and bypass surgery. I have started to feel much better but they put me on zoloft to help treat depression. I told them I wasn't depressed, just upset about my heart and all and they asked what I thought depression was anyway.
I take my kids to the pool 4 days a week and 4 days a week I do excercise in the pool. I have felt more useful than I have in almost 4 years now. I just wonder if anyone knows if sun can affect your meds. I know I am not supposed to be in the sun long and I have gotten an awesome tan. I have never been able to tan like this before. My docs say as long as I don't get too much sun, I am okay. Thanks, Monica. firstname.lastname@example.org
June Johnson, July 2, 2003 - Hi, I have been looking for a CHF specialist for quite some time. The nearest one to me seems to be in Reading, Pennsylvania. I live in Pittsburgh. Does anyone out there know of a good CHF doctor I can go to in Pittsburgh? I am seeing a cardiologist right now, but I am really not happy with him. This is the third one I've seen. He put me on Coreg only because I asked about it. Now he won't increase it to the target dose. Please help. email@example.com
Walter K, July 2, 2003 - Hi, I have seen several posts recently about how well some CHFers are doing. Happily, I can join the crowd to some extent. I just had an echocardiogram and found my EF is up to about 45% - it had been about 30% eighteen months ago. My heart size is down to 5.8cm - it was over 7cm a couple of years ago.
I attribute this improvement to the drug regime prescribed by my CHF specialist, who I found through this forum. The point of this post is twofold: Things can get better, and use a CHF specialist if at all possible. I started out with a locally renowned cardiologist 3 years ago who gave me a 50% chance of living one year. Considering the treatment he was giving me (no salt restriction, and a calcium channel blocker as my only med) this was probably a good guess. firstname.lastname@example.org
Karen F's July 2 reply to June Johnson's July 2, 2003 - Hi, I would suggest that you contact the University of Pittsbugh Medical Center Cardiovascular Institute and ask if they can recommend a CHF specialist. They have one of the largest congestive heart failure programs in the country. Here is the main web page url with direction on how to contact them for more info or to set up an appointment with a specialist: www.upmc.edu/cardiology/. Here is their web page url about their CHF program: www.upmc.edu/cardiology/green/Congestive%20Heart%20Failure/default.asp.
Although I have never been treated there personally, my CHF specialist (in Reading, Pennsylvania) was a former director of the heart failure program at the University of Pittsburgh. I couldn't ask for a more compassionate and knowledgeable man to be spearheading my care. If his former collegues are only half the doctors that he is, you will be in good hands indeed. Best of luck. email@example.com
Tom S' July 2 reply to Hal's July 2, 2003 - Hi, Crushed ice and Altoids along with Hall's eucalyptus have been my salvation from dry mouth for the past 7 or 8 years. firstname.lastname@example.org
Cat's July 3 reply to Hal's July 2, 2003 - Hi Hal, You might want to try Biotine or Salivart Oral Moisterizer. Cat. email@example.com
John H, July 4, 2003 - Hi, Is anyone else on heart rhythm meds to help stop PVCs If so, what meds do you take? I tried mexitil but it made me sick. firstname.lastname@example.org
Scott Brown's July 4 reply to Jack D's June 30, 2003 - Hi Jack, If they didn't put anything in the computer, can you go to another bureau and just try again? Alternately, can you go back and ask about the clause regarding loss of consciousness? Honesty is a good policy, but next time you are asked, perhaps you could tell them about rehabing that tennis injury.
On a serious note, what does everyone put on their license? In our province, they specifically ask if you have been treated for heart disease. The system does not exactly lend itself to honesty. Scott. email@example.com
Len's July 4 reply to John H's July 1, 2003 - Hi, I was on mexitil from 11/89 to 6/91. At the time, I was also taking Tenormin and Norpace. I experiences at times indigestion, cramping and diarrhea. I can't say if it was the mexitil or the combination which caused my problems. When I was taken off mexitil, my problems ceased. JMTNLJT@aol.com
John H, July 4, 2003 - Hi, I just spent an hour online reading all kinds of good news about stem cells from patients' bone marrow being placed in their heart to strengthen heart muscle. Texas University doctors say they are having good success with this on their patients. People with an EF of 20% have gone to 29%. I kept looking for "congestive heart failure" "stem cell" and I got lots of other universities and hospitals trying this. They all say that so far, even though it's in the early stages of study, they are finding good results. Is this just new to me? Does everyone else know about this? firstname.lastname@example.org
Jon's July 4 reply to John H's July 4, 2003 - Hi John, There are 4 articles in a row starting at www.chfpatients.com/surgery.htm#stem_cell_therapy (let it load), with more in the mailings that can be downloaded here and here. I am not posting much on this yet because so many of the safety trials had CABG surgery done at the time as the injections. Since bypass surgery improves EF and symptoms by itself, there's no way to know if the injections were doing anything. Better designed results are just now beginning to trickle in.
This sort of thing is why you need to be very careful in reviewing online results. They can sound a lot better than the current evidence warrants. That's also why some "in" procedures and treatments get little - or delayed - time on this site. ;-) Adult stem cell therapies like this have great promise but the trial design has been shaky so far. Jon.
Susan B, July 4, 2003 - Hi, Thank you all who wrote me about pacemakers. My mother had her pacemaker put in on July 1, 2003 because she has bradycardia. The only problem is that she is fighting with the company to get the card in Russian so that she can visit our exchange students who live in Russia. The company sells pacemakers for the Russian market, but they are giving her a hard time with the card. I have no doubt that she will get her card very soon.
Thank you all. As always thanks Jon, for all of your hard work. Susan B. email@example.com
Tom S' July 4 reply to Scott Brown's July 4, 2003 - Hi, After driving without a valid license for over 4 years because it slipped my mind to get it renewed, I finally broke down and went to the Division of Motor Vehicles and passed the written test with a 100% score. As we were heading towards my vehicle, the road test officer asked me why I had a "handicapped" plate and I was honest. Perhaps it is the best policy but I was on pins and needles for nearly 2 months while I waited for the state to give me the final okay and not revoke my license for CHF.
The procedure in this state is to submit a multi-page medical questionnaire to your doctor which basically asks him if you are okay to drive. I did finally get the okay but that form now has to be filled out each year and frankly I wish I had told the road test officer I had bad hips or something else than heart disease. Bigheart@muchomail.com
Maggie R's July 5 reply to Tom S' July 4, 2003 - Hi, This driver's license thing is new to me, but I got my license renewed just prior to being diagnosed with CHF. Is it really a bad idea? It is then on your info if you have an auto accident so that you can be treated properly. During my first and only CHF episode, I was treated for pneumonia and nearly died. I now wear a medical ID bracelet stating the meds I take and that I'm a heart patient. I got mine on-line at www.americanmedical-id.com/. firstname.lastname@example.org
Joseph P, July 5, 2003 - Hi, I visit a CHF center on a regular basis. The nurses there tell me to brush my teeth more often when I get dry mouth because bacteria builds up more rapidly because lack of salivation. Joseph P. email@example.com
Pat's July 7 reply to Joseph P's July 5, 2003 - Hi Joe, I was told the same thing by my periodontist. I have had gum problems for many years and I have gum treatments every 3 months. Now that I have CHF, I also was told to rinse once a day with ACT to help kill bacteria. firstname.lastname@example.org
Sharon, July 8, 2003 - Hi, This past Saturday, one of our members passed on. Phil had been hospitalized since February at Ottawa Heart Institute on an LVAD, waiting for a transplant. Three years ago we became regular correspondents (through this site) and developed a kinship, since our heart problems were very similiar.
Even while in the hospital, his precious wife Miaretta would call or e-mail me for Phil, who was having one crisis after another. When she called yesterday, she could only rave about the care he received. She stayed at the hospital with him, on a cot provided by the nurses. When the time of his death approached, they encouraged her to climb into his bed and hold him. How I wish we could all experience such compassion and understanding at the end.
If you wish to express sympathy to his widow, e-mail me for her e-mail address. I shall miss his upbeat, insightful look at the world. Rest in peace, Phil. Sharon. email@example.com
Tom S' July 8 reply to Joseph P's July 5, 2003 - Hi, While my teeth and gums were in peril for a good long time, I lost every tooth remaining in my mouth within a year of CHF onset. All my bottoms are stubs and I cannot afford the costs of removing the roots, and dentures, so I have lived with that condition for nearly 7 years. The only things I can't eat are nuts.
I hardly skip a beat eating steaks although I do miss gnawing on the bones, or the softer variety of apples like McIntosh. I strip the corn off the cob before consumption. Otherwise everything in every food group is fair game.The funny thing is that until I tell people, they don't ever seem to notice I haven't got a complete tooth in my head. Loverly picture, isn't it? firstname.lastname@example.org
Doris R, July 8, 2003 - Hello Jon and everyone at The Beat, It's been 9 months or so since I've visited, and even longer since I've posted. Financially, I hit rock bottom. I lost my house and husband. He couldn't live up to his marriage promise, "In sickness and in health..." With that said, I'm limping right along.
I have a question. I was diagnosed 5 years ago with an EF of 10%. With the help of 25mg Coreg twice a day, my EF is now 25%. I have to eat very well. In fact, I have to eat a meal that would gag a mule in order to take my Coreg. My question is: Will there ever be a day that I might just eat a slice of toast or something light in order to take Coreg? Thanks. Doris R. email@example.com
Amir Raza, July 8, 2003 - Hi, My name is Amir from Pakistan. I want to get a doctor to check out my uncle who is a heart patient that wants treatment in New York. Can anyone tell me how I go about getting such a doctor's appointment? How much are fees for treatment and what would be the procedure? firstname.lastname@example.org
Jim, July 9, 2003 - Hi, I've really enjoyed and appreciated the information I've found on this web site. I'd like to share my father's story with you. My father, age 55, had his pacemaker/ICD put in Monday. All went well until 6:00 Tuesday morning when his left arm started shaking. After the usual "Does it hurt?" and other questions, it was finally determined that the defib wire had come loose and was causing the problem. Today we go back in at 6:30 AM to reset that third wire.
I would really like to talk with people about this thing. Many people only get the pacemaker, but he has the ICD also. He has had 2 heart attacks, 2 bypass surgeries (4 the first time, 5 endarterectomies the second), and an aortic valve. Last September he became very weak and short of breath in a few days time. Finally, we were told it was CHF. They said he had CHF for a long time, but we never knew it. He had a procedure in February to fry the short circuits in his heart and kick it back into rhythm. His EF is 20% last I heard and he's a Lasix king.
I'm amazed at the amount of information out there, and the information that I can't find as well. After this pacemaker, we would like to find a CHF specialist to help us. We're in Indiana. Please e-mail me if you have any help. Thank you. email@example.com
Jan, July 9, 2003 - Hi, I am new to this and was going through posts and was wondering, what's the deal with the dental problems? My doc hasn't said anything to me but I have only been a couple of times. Is it the meds that do it? firstname.lastname@example.org
Jon's note: Also, be sure to read The Manual
Monica's July 9 reply to Doris' July 8, 2003 - Hi, I take 25mg Coreg twice a day too. In the morning, I don't eat. I know that I am supposed to, but I have my coffee. I am fine in the evening although then I do eat supper and then take my Coreg. They put me on Coreg 9 months ago and it has helped. They haven't diagnosed me with CHF but keep telling me that my outcome will be heart transplant. Anyway I would try it to see what would happen. I did and I do fine in the mornings. Good health. email@example.com
Kate, July 9, 2003 - Hi, I had a pacemaker/ICD implant several months ago and have become sicker, not better. Has anyone else out there had problems with this device? I went into the hospital able to exercise for 45 minutes, garden, wash windows, etc. Now I can only handle minimal tasks. The settings have been changed twice. Is anybody able to offer advice? Thanks, Kate. firstname.lastname@example.org
Katherine H, July 10, 2003 - Hi, To Jim and Monica, for specific pacemaker problems or questions, I would refer you to www.implantable.com. They have a message board for ICD recipients and a separate one for pacemaker recipients. They are both full of people with lots of knowledge and they can discuss specific pacemaker/ICD settings, etc. I have a biventricular pacing device and can't say enough for how much it has helped me, but I know they are not for everyone. If you have specific questions about the bivent, you can e-mail me if you want. email@example.com
Maria, July 10, 2003 - Hi, I have CHF and am scheduled to have a hernia repair surgery under complete anesthesia. Has anyone had surgery with CHF and lung problems? I also have chronic asthma and chronic bronchitis. Any information is greatly appreciated. Thank you. firstname.lastname@example.org
Dorothy, July 10, 2003 - Hi, I thought you all might like to know it is possible to improve your ejection fraction - even when the cardiologist predicts that you are a "perfect heart transplant candidate." I was diagnosed with CHF and an EF of 24% in April, 2000. This past March I had to have gallbladder surgery. Testing showed my EF had improved to 54%!
I knew I had been feeling very good and had lost 20 pounds. After 20 years of head pain caused by trigeminal neuralgia, last August I finally found a radiation oncologist who administered a one-hour dose of stereotactic radiation. My pain level went from 10+ to about one. The weight seemed to melt away once I was able to stop taking heavy doses of Tegretol for pain control.
Jon, I cannot begin to tell you how very thankful I am to God that you, through His grace, have developed this this web site for CHF patients. I will emphasize that I always read labels and choose food with as little sodium as possible. I have been so very fortunate that Coreg works for me. In April I was able to quit Lasix and potassium supplements.
I am living proof that we have to accept that God does know the future and will take care of us. I had a stroke during brain surgery to place a teflon pad between a blood vessel and a nerve which it was wrapped around. Normally, the blood vessel passes over or under the nerve but in my case it is wrapped around it and has resulted in a lifetime of pain.
I found that riding my exercise bike would strengthen my quadricep (thigh muscle) and I was able to overcome the limp which had resulted from the stroke. I usually exercised at least 6 hours per week. Little did I know that all that exercise would help me overcome the problems caused by my CHF.
My internist told me I might have to be content to be a couch potato and be glad that I was alive. The cardiologist was determined that I would have a heart transplant. I assured him that he should put that possibility at the very bottom of his list! I give God the glory that I am able to share my success story. I assure you I will never agree to quit taking Coreg and that I will continue to exercise regularly.
I know this is quite lengthy but if I can be of help to another CHFer, please let me know. I wish each of you good days. Dorothy Powell. DPowell806@aol.com
Giorg's July 10 reply to Doris R's July 8, 2003 - Hi Doris, In my experience, I feel worse if I take Coreg with a lot of food. My blood pressure goes down during digestion and with Coreg it goes even lower. I'm using a trick lately to control better my pressure: I take my morning Coreg pill cut in half - 12.5mg at 8:00 AM and 12.5mg at 12:00 PM. The side effects of the medicine are lighter. Be well, Giorg. email@example.com
Henry S, July 10, 2003 - Hello to all and a special thanks to Jon for this site. I have been reading the posts for almost 2 years and they have been a life saver in themselves. They help reduce the stress of the unknown. Thanks to all posters.
I had my first heart attack in l991 at the age of 51, and had a angioplasty done. It held up well until another heart attack in November of 1999. A triple bypass was performed and I did well for a year until CHF arrived with SOB, tiredness, etc. After a year of treatment for it, a heart cath showed one of my bypasses had collapsed, so here I am today.
My current EF is about 35% and I am on 3.125mg Coreg (I just reduced it with my doctor's okay due to low blood pressure), 25mg Cozaar, 20mg Lasix, 90mg Imdur, 10mg Ambien, 20mg lexapro, 20mg bextra (I just started this to replace 800mg Motrin three times daily and I think it is working great with no side effects), 100mg CoQ10, nitro spray as needed, flonase as needed, 360mg Ecotrin, 20mg Zocor, and 10mEq MicroK. So I have the meds fairly under control. <g>
I have been feeling very well in the mornings, but tend to get angina late in the day and tire easily if I overdo things. I have the dry mouth problems and use bioteen toothpaste and mouthwash, which are expensive but worth it. I watch the salt and can tell when I eat too much by SOB and tiredness. I play 18 holes of golf as long as I ride and take at least a day off between rounds.
I feel my quality of life is most important and I am happy and doing well. I just had an AAA repair done on my aorta, which my cardioligist found last year. I feel very lucky to have him and the help of this web site. Best wishes to all and I will try to participate here more often. firstname.lastname@example.org
Abigail P, July 10, 2003 - Hi, I'm actually new to this board. Recently, I've been diagnosed with congestive left heart failure. I am class 3 I found out last month. I didn't even know they had already classed me, but I think it was because my BNP was 310 which puts me in that class. My cardio doc Dr. Hummel out of MidOhio Cardiology is very good. He has a partner that specializes in CHFers and cardiac transplant here in Columbus, Ohio. Am I wrong in pursuing this since I'm a class 3? email@example.com
Jon's note: Functional heart class is based on your ability to do physical activity ;-)
Walter K, July 11, 2003 - Hi all, A number of people on the forum have been complaining about dry mouth lately. There is a prescription med that may help, called Evoxac; not many people - including most of my doctors - were aware of it when it was precribed for me about a year ago. It is primarily for people who have Sjogrens syndrome, which is a terrible disease involving very extreme drying out of the mouth, eyes, etc.
My CHF doc had not heard of Evoxac but looked into it and said it is okay for me to take it. It was prescribed for me by an ear, nose and throat doctor because I was having problems with dry eyes and with a heavy throat mucous buildup. I think it does help. I don't know if it would help any of the dry-mouth posters but it might be worth looking into. firstname.lastname@example.org
Don C's July 11 reply to Abigail P's July 10, 2003 - Hi Abigail, One does not really "pursue" a heart transplant. Having just had one over Memorial Day weekend, I can tell you that if your health gets bad enough to warrant a transplant, life on the other side can be wonderful. However, transplant is the last step when nothing else will work and the only choice is not seeing any more sunrises.
Work with your doctors to find the best course for you. Don't get your heart (no pun intended) set on having a transplant. You may never need one. If your course does take you to transplant, remember it is just a treatment, not a cure. Best wishes and good health, Don. email@example.com
Jacky's July 12 reply to Jon's July 11, 2003 - Hi Jon, I am confused about Abigail's class 3 and BNP. This dos not fit the chart you have posted. I have a BNP of 399 and thought I was class 2. Am I wrong? Jackymwb@earthlink.net
Jon's July 12 reply to Jacky's July 12, 2003 - Hi Jacky, The chart on the BNP page lists the results of a trial testing BNP blood levels in lots of people already classified as class 1, 2, 3, or 4 : So many class X patients had BNP test results in range Y to Z.
Functional heart class is explained in The Manual at www.chfpatients.com/CHFinfo.htm, and is based on a person's ability to perform physical activity. It has nothing to do with any test results, medications, or doctor's opinions. CHFers often look for a scientific way to determine functional heart class, but there isn't one. <g> You can determine your own functional heart class just as accurately as any doctor! Jon.
Natalia's July 12 reply to Abigail P's July 10, 2003 - Hi Abigail, My name is Natalia. I had a heart transplant 3 months ago in North Carolina. I was class 4 and in end-stage heart failure. Generally, a cardiologist will recommend you for a transplant if your heart does not respond to any other treatment. You are responding to treatment if your functional heart class gets better (decreases) or your EF increases a bit at least every 3 months. That is what I was told. Beyond that it is on a case by case basis.
If you think it would help you, which it might, ask. However, remember that a transplant is a lot of work for the rest of your life. It involves lots of money, lots of meds, and no health insurance will ever take you except the one that keeps you through the transplant itself. Many issues are involved to consider.
If you are really, really sick like I was, by all means call your insurance and ask with whom they have a contractual agreement for transplants and ask for a referral for evaluation. Good luck. firstname.lastname@example.org
Sheryl C, July 12, 2003 - Hi, Recently someone asked me what diabetic drugs a person with CHF shouldn't take. I couldn't remember but I found this info today so be sure and ask your cardiologists about these drugs if you are on them. "Specifically, metformin (brand name Glucophage) and a class of medications called thiazolidinediones - both of which help control glucose levels in diabetics - may cause serious complications in patients with heart failure." The findings are detailed in a study in the July 2 issue of the Journal of the American Medical Association. Sheryl C. email@example.com
Brian, July 13, 2003 - Hello fellow CHFers, I've been lurking around this site for about 5 years now with a few different e-mail addresses listed for me. I just wanted to remind everyone here to go to the site index and to read The Manual. Then when you're done, read The Downhill Slide - it is one truly powerful message there, one that all of us need to know even if we don't have CHF. firstname.lastname@example.org
Norma, July 13, 2003 - Hello again everyone, I'm wondering if anyone on this forum has taken any pills for macular degeneration. The pill I am considering contains lutein, zinc, copper, bilberry and other vitamins. Would any of these ingredients react with Lanoxin, Cozaar or Aldactone? My doctor didn't seem to know and my cardiologist recently passed away so I am hoping someone can help? Thanks, Norma. email@example.com
Greta, July 13, 2003 - Hi, I am 56 years old and live in Arkansas. I was diagnosed with CHF in March of this year. They first thought it was an asthma-like condition. I am glad I had an on-the-ball PCP. The cardiologist I had been going to for several years (I was born with a defective heart valve - they call it aortic stenosis) tried to pooh-pooh the idea because an echocardiogram several months earlier showed no change.
My PCP sent me to another cardiologist, who very quickly made the diagnosis. I do believe the Lord was handling that for me - He handles everything else! I was told that my CHF was caused by viral myocarditis, and that a virus attacked my heart muscle. My EF is 20% and I take a lot of drugs. I was on digoxin (Lanoxin), but the doc took me off it because it was causing me too much fatigue.
I don't know if I can help anybody. I just wanted to be a part of the action on this web site. By the way, thank you Jon for listening to the Lord and bringing this web site up for our benefit. I am a "born again, blood washed, and heaven bound" Christian, and I have been since I was a small child. I am also thankful for a Christian husband.
Hey, on the low sodium eating, I ordered from Amazon.com a real neat cookbook with absolutely fabulous recipes. Its title is "The No-Salt, Lowest-Sodium Cookbook" by Donald A. Gazzaniga, who is also a CHF patient.
Now for my question: What in the world are NSAIDS? firstname.lastname@example.org
Noel, July 15, 2003 - Hi, Has anyone been treated for too-high blood pressure between the lungs and the right heart? My doc seems to just keep mentioning that my pressure is high and that it can get to a point where it is too high to allow for a transplant but suggests nothing for this condition. Thanks and God bless all tuned in here. email@example.com
Jon's July 15 reply to Noel's July 15, 2003 - Hi Noel, This is called pulmonary hypertension. See www/chfpatients.com/ph.htm. You should immediately find out what your pressures are and see a doctor who treats this, since it can be very serious and since there are treatments available. Your current doc is way off base not educating you and seeking expert advice on getting you immediate treatment. Jon.
Jerald P's July 15 reply to Christine L's July 1, 2003 - Hi, Presently the scoliosis I have is causing my body to curve like a banana. There are bone spurs on my ribs so on the left side they are rubbing against one another. Also, there are bones out of place in my left foot, which was crushed in an accident in 1967. The doctors say that because of poor circulation I would probably lose the foot if they tried to repair it. For foot, rib and testicular pain I take Vicodine and Advil together along with Elavil which, I was told, blocks pain receptors in the brain. The whole mess numbs my body and still I feel dull pains.
The doctors say that if I wish to pursue pain relief, they will give me morphine, which I declined because I'm already a zombie. I won't name all my medications because there area a lot of them. I take other drugs that a person with CHF shouldn't take but, like you say Christina, what's a body to do? Jerald. firstname.lastname@example.org
Valerie, July 15, 2003 - Hi, I have been doing a lot of reading on the subjects of DCM and CHF, and am wondering if anyone out there can advise me about what to expect of the future.
I have 2 small children (who I am raising on my own) and I need to know what the future holds in order to care for all of us. In March of 2003 I was hospitalized with DCM and CHF. My pulse was 136 beats per minute, my echo showed an EF of 25% and my angiogram did not detect any blockages but the cardiologist did say I had a "leak" on the left side. I am well compensated in that I feel fine most of the time. I have been back to work full-time since April 7th, 2003 and the cardiologist is pleased with my response to meds.
My question is, "What happens next?" I read so much gloom and doom and after reading some of the caregivers' tales I feel sorry for them. It would appear that there are a lot of ungrateful CHFers out there. They have no idea how lucky they are to have someone to love and care for them. Any info., advice or suggestions would be sincerely appreciated. Before March of 2003, I had never heard of DCM. Thanks! email@example.com
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