Jon 1-1 here we go again
Margaret D's 1-1 reply to Natalie K's 12-31 eating out low-sodium
Valerie 1-1 thanks
Joyce's 1-1 reply to Catherine L's 12-31 best wishes and prayers
Clara D's 1-1 reply to Jon's 12-31 Atkins' diet and best wishes
Jon's 1-1 reply to Clara D's 1-1 Atkins' diet results to date & more
Dee L's 1-1 reply to Catherine L's 12-31 prayers for you & more
Susie O 1-1 best wishes
Diana 1-1 it could always be worse!
Jim Taylor's 1-1 reply to Jon's 1-1 amen!
Jacky's 1-1 reply to Jon's 1-1 diets, food preparation, Coreg & more
Dee L 1-1 pulmonary hypertension & pressure - anyone else?
Catherine L's 1-1 reply to Jon's 1-1 dropping Coreg, this site & more
Catherine L's 1-1 reply to Diana's 1-1 financial assistance
Amelia's 1-1 reply to Catherine L's 12-12 prayers & more
Amelia's 1-1 reply to Jon's 1-1 diets, meds & more
Jon's 1-1 reply to Catherine L's 1-1 dropping Coreg
Liz H 1-2 Coreg, insomnia - seeking advice
Barb N 1-2 metformin, diabetes and CHF
Jon's 1-2 reply to Barb N's 1-2 metformin, diabetes and CHF
Vicki's 1-2 reply to Jon's 1-1 stopping Coreg
Jon's 1-2 reply to Vicki's 1-2 stopping Coreg
Tracey C 1-2 prescription error means extra pills
Ellen 1-2 seek advice on health insurance for self-employed
Paul R 1-2 seek altitude experiences
Ben B's 1-3 reply to Ellen's 1-2 losing health insurance - an option
Ruthie A's 1-3 reply to Barb N's 1-2 diabetes experience
Dorothy P's 1-3 reply to Jon's 1-2 stopping Coreg
Jon's 1-3 reply to Dorothy P's 1-3 stopping Coreg
Michael S' 1-3 reply to Paul R's 1-2 experience at higher elevations
Katherine H's 1-3 reply to Paul R's 1-2 also seek experiences at higher elevations
Maggie 1-3 my CHF experience
Valerie's 1-4 reply to Paul R's 1-2 traveling to higher altitudes
Joe S' 1-4 reply to Michael S' 1-3 higher altitudes, diabetes
Jim L 1-4 anxiety when short of breath
Jon's 1-4 reply to Jim L's 1-4 anxiety when short of breath
Tom S' 1-4 reply to Jim L's 1-4 anxiety when short of breath
Sheryl C's 1-4 reply to Paul R's 1-2 altitude experiences
Natalie K's 1-4 reply to Jim L's 1-4 shortness of breath and anxiety
Dennis D 1-6 delaying transplant, supplement questions & more
Jim Devine 1-6 beta-blocker and calcium channel blocker questions
Unmesh1-6 beta-blocker differences questions
Jon's 1-6 reply to Unmesh's 1-6 beta-blocker differences
Myrtle C 1-6 prayer request, weight problem & more
Sheryl C's 1-6 reply to Jim L's 1-4 living with anxiety from heart failure
Cat's 1-6 reply to Jim L's 1-4 shortness of breath
Patrick M 1-6 what about coral calcium?
Cat 1-6 reductions in Medicare reimbursement
Cecil 1-6 amiodarone questions
Jaci B 1-6 making choices
Cat 1-6 a Dr. Atkins appearance on tv
Jon 1-6 low carb diet tip and warning
Tom S' 1-6 reply to Dennis D's 1-6 facing transplant dilemma
Natalie K's 1-6 reply to Cat's 1-6 very useful, thanks
Willie 1-6 seek suggestions & advice
Julia H 1-6 vomiting, passing out on Coreg - anyone?
Ruthie A's 1-7 reply to Willie's 1-6 finding information & more
Kathy 1-7 dig toxicity & other questions
Jon 1-7 just for your information
Tom S' 1-7 reply to Patrick M's 1-6 claims for cure-alls aren't to be trusted
Gino's 1-7 reply to Kathy's 1-7 dig level, diuretics and more
Ben B 1-7 I passed my disability review!
Charles D 1-7 what about these 2 drugs?
Jon's 1-7 reply to Charles D's 1-7 standard therapy
Staci H's 1-8 reply to Jim D's 1-6 verapamil, Atkins & more
Cat's 1-8 reply to Staci H's 1-8 calcium channel blockers and diastolic heart failure
Dawn 1-8 coping with heart failure
Trish L 1-8 prayer request & more
Chuck H 1-9 different beta-blockers
Theresa 1-9 seek North Carolina CHF specialist
Staci H's 1-9 reply to Cat's 1-8 my experience & more
Ruthie A's 1-10 reply to Staci H's 1-9 calcium channel blocker confusion
Michael S' 1-10 reply to Jon's 1-7 amiodarone and guidelines, staying well
Jon's 1-10 reply to Michael S' 1-10 amiodarone and guidelines
Joseph P 1-10 dofetilide (Tikosyn) and arrhythmia questions
Bee 1-11 seek atenolol info & more - very frustrated
Ray Bilbo 1-11 just visiting
Gino's 1-11 reply to Charles D's 1-10 different drugs in same class may work as well
Dawn's 1-11 reply to Charles D's 1-10 drug assistance program experience
Staci H's 1-11 reply to Ruthie A's 1-10 thanks for info
Valerie 1-11 seek test info
Joe S 1-11 flu and shortness of breath question
Jacky 1-11 Coreg questions
Hope M 1-11 seek echo acronyms and normal reading ranges
Joe W 1-11 seek ICD info please
Tom S' 1 -11 reply to Charles D's 1-10 possibilities for veterans
Valerie's 1-11 reply to Joe W's 1-11 ICD experience
Karen K 1-11 seek Social Security benefits info
Bee 1-11 thanks
Paul R's 1- 13 reply to Karen K's 1-11 Disability
Scott H's 1-13 reply to Joe W's 1-11 ICD/pacemaker experience
Louis G 1-13 why are caths so often used?
Tracey C 1-13 are MUGAs enough?
Marley's 1-13 reply to Bee's 1-11 seek drug info
Jon's 1-13 reply to Marley's 1-13 be cautious
Lori K 1-13 will I stay improved? right heart cath question
Clara D 1-13 disease progression & more
Jon's 1-13 reply to Clara D's 1-13 disease progression & more
Rick J 1-13 stunned by disability denial reasoning
Amelia's 1-14 reply to Karen K's 1-11 Social Security benefits
Clara D's 1-14 reply to Jon's 1-13 hoping it stays mild
Prentiss G's 1-14 reply to Theresa's 1-9 CHF docs in North Carolina
Tom S' 1-14 reply to Theresa's 1-9 Sanger Clinic recommendation
Clara D's 1-14 reply to Theresa's 1-9 CHF docs in North Carolina
Dorothy P's 1-14 reply to Rick J's 1-13 disability experience
Emil S' 1-14 reply to Rick J's 1-13 sounds like Social Security
Bee's 1-15 reply to Marley's 1-13 edema experience & more
Kathy 1-15 digoxin toxicity very bad
Amelia 1-15 Toprol-XL question
Margaret D 1-15 resistance training question
Jon, January 1, 2003 - Hi everyone, I hear some varied ideas about heart failure and its treatments throughout each year. I also hear some pretty varied ideas about religion from people throughout each year. On the subject of heart failure, I wrote a web site; On the subject of religion, I'll just quote one verse: "Then they said unto him, What shall we do that we might work the works of God? Jesus answered and said unto them, This is the work of God, that ye believe on he whom he hath sent." So I figure religion ain't so complicated after all. ;-)
Heart failure is a different story. It is pretty complicated. What does the new year hold for us CHFers? I don't know, but I feel a soapbox coming on! I hope doctors and researchers become less fascinated with a few new toys and more interested in us as real people, so they start doing those already-known things right that make our lives easier in the here and now, rather than wandering all over the map looking for some elusive, mystical, magical cure.
Maybe if we can convince them of the true scope of the problems caused by CHF in our very real lives, they'll start to listen. Once they start to listen to patients, anything is possible.
So talk to your doctor honestly and if he doesn't listen, get his attention however you can, from saying, "Hey, I'm talking to you!" to kicking him in the shin. Ask him straight out why he doesn't take you seriously - right to his face! Ask him if he thinks you are stupid or if he thinks your perceptions are less important than his! Pin him down and make him think - if the person with the illness is ignored when he describes that illness honestly, is the person refusing to listen a real doctor?
If he never catches on, find yourself a real doctor and stick to him like an Alabama tick to a porch dog! Oh yeah, stick like that to Jesus and it will pay off even more. ;-) Jon.
Margaret D's January 1 reply to Natalie K's December 31, 2002 - Hey Natalie, I sure got a laugh from your post! I carry Mrs. Dash with me too, sometimes 3 different kinds. I always bring my own salad dressing, Ole Cape Cod light raspberry vinaigrette, which has only 35mg per 2 tablespoons. My dinner companions are frequently aghast when I whip out my salad dressing. Hey, whatever works! I always ask them to wipe the grill off before grilling fish or something. I request that all seasonings be eliminated, since I have found that not all servers know that salt is sodium, or vice versa.
I also do not hesitate to send something back if they forgot and put salt on a dish. I have found that if you are polite and smiling but firm, that restaurants will bend over backwords to accomodate me. I ask them to write the order in large letters and underline the requests as well as personally speaking to the cook. Hmmm, am I overdoing it? <lol> One last note: you can e-mail Don on the www.megaheart.com web site with any low salt question, and he will get right back to you. I recently received a response in 6 minutes! email@example.comJon.
Valerie, January 1, 2003 - Hi Jack and Natalie, Thanks guys, I feel much better. Valerie. firstname.lastname@example.org
Joyce's January 1 reply to Catherine L's December 31, 2002 - Hi Catherine, I wish you the best with your surgery Friday and I will pray for the doctor to heal you. My prayers will be with you. I know how alone you feel facing this but they will keep you comfortable and you will feel better every day. Just keep the faith and a good sense of humor will get you through anything. Have a happy new year and think how much better things will be when this is all over, Joyce. email@example.com
Clara D's January 1 reply to Jon's December 31, 2002 - Hi Jon, What a time to be sick! I'm glad you're feeling better. We haven't had an update on your experience with the Atkins' diet. I hope that wasn't the cause of your recent discomfort. Wishing you and everyone a healthy and happy new year, Clara D. firstname.lastname@example.org
Jon's January 1 reply to Clara D's January 1, 2003 - Hi Clara, No, drug withdrawal got me. The Atkins' Diet? Well, in a nutshell: I have lost very little weight (5 1/2 lbs). However, my energy level is far more stable, I am never hungry anymore, and no matter how much I eat (as long as it is low-carb) I never gain a pound, and that includes incredibly rich foods. So, I'd say that if you want to try it, don't expect any miracles on weight loss if you take CHF meds, but it may help you feel better - or not.
The only real drawbacks I have found are 2: It means more cooking and thus more dishes as well; and it is very hard to do as low-sodium.
January 9, I start tapering off Coreg with my CHF doc's assistance (he isn't happy about it, though). I will eventually stop it completely, having pinned down several major side effects to that specific drug (insomnia, for instance). I'll let you all know how it goes: what problems stop when I am completely off the drug, what problems are caused by being off the drug, etc. It will be a very slow process. Who knows, maybe without Coreg, the Atkins' diet will drop more pounds off me? ;-) I'm not holding my breath, though. Jon.
Dee L's January 1 reply to Catherine L's December 31, 2002 - Hi, My prayers will be with you, Catherine. It's okay to be afraid of the unknown but I have every confidence that you will do well. May the hands of your doctors be blessed and may God give you the comfort you need during this time. Please let us know how you are doing. Dee L. email@example.com
Susie O, January 1, 2003 - Happy new year everyone, I hope that 2003 will be a healthy one for us all. Jon, I hope you are feeling better. Take care, all. firstname.lastname@example.org
Diana, January 1, 2003 - Hi, I have had heart failure since 1999 and was recently told while in the hospital that my heart pumping rate has gone from 40% to 20% in 3 years. The doctor has told me no stress, etc., but I am really in a jam with my financial situation being over 16,000 dollars in debt and no health insurance; But I am still alive! DKL1551@aol.com
Jim Taylor's January 1 reply to Jon's January 1, 2003 - Hi, To the last line of your post, Amen! Jim. email@example.com
Jacky's January 1 reply to Jon's January 1, 2003 - Hi, Why do diets always require so much time and trouble to prepare? I know several people who are vegetarians and the kitchen looks like a war zone when they finish, and the dishes! Good food, though! Happy new year everyone! Jon, I am a bit concerned that you are decreasing Coreg and I am just starting! Jackymwb@aol.com
Dee L, January 1, 2003 - Hi, I have developed pulmonary hypertension related to my heart failure. It's been very disabling with a feeling of intense pressure in my chest radiating up to my neck. I was given an IV drug called nesiritde (also known as Natrecor), which helped for awhile but the symptoms are back again. I have also developed several pockets of fluid in the sac surrounding my right lung which were expirated, but have returned. Has anyone else any experience with PH or any advice? Dee L. firstname.lastname@example.org
Catherine L's January 1 reply to Jon's January 1, 2003 - Hi Jon, Please take care as you stop the Coreg. You are very important to all of us as well as your family. What drugs are you on now, and will Porter give you a different beta-blocker or what? You and all the CHFers on this site are my lifeline. I don't know what I'd have done without this site and the kind people here over the past 3 months. Thank you also for the quote from Corinthians about the body perishing but the soul being renewed daily. It comforted me, Catherine. email@example.com
Catherine L's January 1 reply to Diana's January 1, 2003 - Hi Diana, Are you on Social Security disability or Medicare or Medicaid? Can you try to get it? Take care, Catherine. firstname.lastname@example.org
Amelia's January 1 reply to Catherine L's December 12, 2002 - Hi Catherine, I know how afraid you must be. You are in my prayers and I wish you the very best. May God bless you and give you His love and a speedy recovery. Best to all and a very very happy and healthy new year, Amelia. email@example.com
Amelia's January 1 reply to Jon's January 1, 2003 - Hi Jon, I'm so sorry you had a rough few days. It sounds like a good plan to taper off some meds. I sure hope this will do the trick for you. As far as dieting goes, yes it is a lot more cooking. I am on a very low-carb program and if I don't have something cooked and ready, then I start picking on carbs. I try to cook for 2 days at a time. Here's hoping all goes well with you and as far as doctors go, well enough can't be said about having the right doctor. Thanks for reinforcing this issue to us. Best to all, Amelia. firstname.lastname@example.org
Jon's January 1 reply to Catherine L's January 1, 2003 - Hi, No replacement beta-blocker, at least until I see whether I can be weaned off Coreg. My appointment is for the 9th. This is not a recent decision-making process, just one that has finally been completely made. I have been on Coreg for at least 6 years. It never made me feel better, only worse, although it raised my EF and slowed my heart rate. It is time for me to seek other options, that's all. Jon.
Liz H, January 1, 2003 - Hello fellow CHFers, I was diagnosed with CHF and IDCM in August of 2001. I had a cardiac cath right away and found that I had no plugged pipes. I have over the past 1 1/2 years been put at target doses of all meds. I take 25mg Coreg 3 times daily, 0.125mg digoxin once daily, 25mg spironolactone BID, 50mg Cozaar in the morning and 100mg in the evening, 2mg Bumetanide BID, 20mEq potassium chloride as needed. I have changed the potassium so many times it makes one's head spin. I also take 150mg Wellbutrin SR once daily and 0.5mg Estradiol once daily.
I am very concerned about the amount of Coreg I am taking. I have seen some reference to it in recent posts, but do not have the whole story. My heart function is back to nearly normal based on an echo done in November, but I just do not feel any better and it is very frustrating. I have had a hard time sleeping all along and it is just getting worse. Most recently, I have been experiencing palpitations and flushing on a regular basis and I am concerned with this. I have a very stressful job and lack of sleep surely does not help.
Any feedback will be greatly appreciated. I just came across this site on the recommendation of another CHFer in my HMO's web site and am just thrilled to have the knowledge and understanding of folks also dealing with CHF! Thanks so much, Liz. email@example.com
Barb N, January 2, 2003 - Hi, Regarding metformin and CHF, - no Jon, you're not bursting any bubbles! There are significant risks to metformin, which are certainly much higher when kidney function is compromised since the drug is cleared from the body primarily by the kidneys. The cite I was referring to is Rachmani et al., 2002 Eur J. Intern Med. 13(7):428. Although not a large patient group, this was a prospective study that included people with CHF as well as CAD who took metformin; lactic acid levels were measured. A population-based study (Emslie-Smith et al, 2001 Diabet Med 18(6): 483-8) looked at the percent of people with contraindications to metformin who continued to use. This reported a low incidence of acidosis (one in 4600 patient years.) This study was retrospective and lactic acid levels were not monitored, so it is possible that sub-clinical acidosis was missed.
One potential problem with CHF and metformin is that many of CHF symptoms like fatigue, difficulty breathing, and heart beat irregularities mimic symptoms of acidosis. However, if the kidneys are working properly, it looks like metformin might be a viable alternative diabetes drug for people with CHF, particularly as a low-dose addition to insulin therapy. Aside from calorie restriction and exercise, metformin is the only effective blood sugar lowering alternative that does not cause weight gain (so it may be worth discussing with one's physician).
Also, as noted in my previous message, the glitazones (thiazolidinediones) can result in exacerbation of edema and heart failure. See the actos web site: www.actos.com section on safety for discussion of actos and heart failure. An interesting recent commentary on these drugs is found in Prescrire Int., 2002, 11(62): 170-6, which also highlights the potential for sodium and water retention, among other potential adverse effects, and recommends that these agents should only be used in controlled clinical trials. I cope with both CHF and diabetes, and I am very interested in input from others regarding meds, doctors and other issues like how to find good tasting food that is neither sweet nor salty. Thanks, and happy new year! firstname.lastname@example.org
Jon's January 2 reply to Barb N's January 2, 2003 - Hi Barb, A dietary switch to low-carbohydrate eating is an excellent way to help effectively control blood sugar; I assume that's what you mean by low-calorie.
Since reduced kidney function is extremely common in CHFers, I like to err on the side of caution. Here's one reason I popped up and replied to your post:
My own kidney function is "normal" in my CHF doc's words, but I know the actual numbers and my kidneys do not quite make normal any longer. He is talking about a good number for someone with heart failure. That is the kind of thing that makes many CHFers choose poorly because of loose explanations by doctors or nurses. In effect, if one wants to know their real kidney function, get the actual numbers and then decide for yourself whether your risk on this account is increased. Remember that with a slightly-higher-than-normal reading on blood creatinine testing, your kidneys may already be 50% dysfunctional!
That's one reason I urge caution on a drug that has a black-box warning for CHFers. Another is that frankly, I am seeing more and more questionable studies that lots of doctors are buying into lock, stock, and barrel. Finally, I have an overblown sense of responsibility and with my personality - that of a pit bull - I feel obligated to always question, doubt, and probe. Just me <sigh> So it went and so it goes. ;-) Jon.
Vicki's January 2 reply to Jon's January 1, 2003 - Hi Jon, I know that you've weighed all the options before making the decision to taper off Coreg and I hope it works for you. However, I am quite concerned based on my own experience. In only 5 to 6 weeks time after being off the Coreg, my EF dropped from 60% to 48%. According to my cardiologist, there were many other subtle differences in my echo. I was having some of the symptoms again, trouble with projecting my voice, shortness of breath, soreness and tightness in my chest so I had a suspicion before the echo that the results would be disappointing.
I can say however, that mentally, I felt so much better off Coreg. As the doctor noted, I was much more animated. I actually felt some emotions again, I could laugh and I could cry. My insomnia improved but didn't disappear. Simply put, I felt sharper and didn't feel the constant shadow of depression. Since going back on Coreg I have had to resume my antidepressant Celexa, and I continue to take Restoril to help me sleep. I also have Ativan to take as needed for anxiety. All of these drugs just to compensate so that my heart's work load is reduced.
What a choice to make: quality of life or living longer (hopefully) to watch my new grandchild grow up. Becoming a grandmother is the best thing that ever happened to me! You will want to make sure that you're around to enjoy that same honor when your daughter has children. She will want you around too. Please be cautious and be realistic as you embark upon this journey. I'm not preaching, just concerned. You'll be in my prayers. Thank you for all of your hard work on this site. As others have expressed, this site is indeed a blessing from Jesus! God bless, Vicki. Snevetsii@aol.com
Jon's January 2 reply to Vicki's January 2, 2003 - Hi, You're right that I have considered all the angles, for over a year. Other factors include that some of my side effects disable me worse than my heart failure, and I doubt that many CHFers have a CHF doc approaching this move with as much forethought and caution as Doctor Porter. I am already adding other drugs along the way to mimic some of Coreg's effects, and the increased regular testing is going to be a real pain as he oversees this. He made that clear.
Finally, I walk the journey of this life with Christ, and believe this is the right time to make this move, with His help. I agree with Paul that "For to me, to live is Christ and to die is gain." I'm not worried about dying, or about living for that matter. Grace abounds! :-) Jon.
Tracey C, January 2, 2003 - Hi everyone, My prescription service made an error and as such I've wound up with 180 each of 5mg Lisinopril pills that I won't be using. Just thought I'd mention it. My e-mail address is email@example.com. Thanks, Tracey. firstname.lastname@example.org
Ellen, January 2, 2003 - Hi, I am writing in desperation. First, let me say hello to all of you, and I wish you the best. I know how much of a burden living with CHF can be. My problem is that I am trying to find individual health insurance for my mom, who is self-employed has been diagnosed with CHF. Previously she had Blue Cross via her husband's job, but now that she is divorced and her COBRA has lapsed, I am finding nothing but shut doors at every insurance company I have tried. Can any of you recommend a reliable IC? I sincerely appreciate any help you can give me, Ellen. email@example.com
Paul R, January 2, 2003 - Hi, This is a fabulous site. Just reading posts from some of the people who are taking my medications is helpful. I'm on Coreg, Cozaar, Lipitor, Aldactone (spironolactone), and Coumadin (warfarin). I recently stopped taking amiodarone (Cordarone). The amiodarone was for my PVCs and since I got an ICD it seems that perhaps the amiodarone isn't necessary; so far, so good.
Has anyone with CHF had problems with altitude? I hope to visit my sister in Santa Fe, where the altitude is about 7,000 feet. I have some problems with breathlessness, and I'm afraid the altitude might make it worse. Of course, where I am - Minnesota - the cold weather makes my breathlessness worse already. Paul R. firstname.lastname@example.org
Ben B's January 3 reply to Ellen's January 2, 2003 - Hi, I am encountering a similar situation. After 4 years on disability with 2 years on Medicare, my doctors are now all unanimously pronouncing me able to return to work. I am being reviewed by SSA and a private disability company, and they both are probably going to dump me off, mainly because my doctors flat out refuse to sign my disability forms. I suppose I could shop around to find a doctor who would sign these but I've decided to give work a try since I feel surprisingly okay.
What has all this got to do with your question? My main concern is not an income but health insurance. There is no private insurer who will give a person with CHF health insurance, and there will likely be some exclusion period or possible total exclusion at any group plan offered by an employer. What I have found in my state (California) is that they have a special program funded by tobacco funds for people who are high risk and can't find insurance elsewhere. There may be something like this in other states. I found it on my state's insurance commission web site. There is a waiting list of 6 months, but it's the best I've found. Good luck. This is the thing that most terrifies me about being knocked off of disability.
PS. I thought that Blue Cross legally had to offer her a conversion policy regardless of pre-existing condition when her COBRA lapsed. I may be wrong about this and it may be too late, but it is a good thing to check into and keep in mind for anybody else at the end of their COBRA with a serious pre-existing illness. email@example.com
Jon's note: Search for: "insurance pool" state name
Ruthie A's January 3 reply to Barb N's January 2, 2003 - Hi Barb, I am a diabetic and a CHFer too, as are many of us here. I am allergic to sulfa, so all oral meds for diabetes except metformin are unavailable to me. However, as I posted awhile back, I will no longer take metformin. I am now on two types of insulin: Lantus and Humulog. I am doing quite well with controlling my blood sugar levels now.
You mentioned that metformin was the only diabetic medication that would not cause weight gain. That's a generalization, which may have exceptions, and I am one of the exceptions. All the time I was taking metformin, I was religiously following my meal plan. While I didn't gain any weight during that time, I wasn't losing any either! It was not until I was on adequate doses of insulin that my weight started coming off. Nothing else has changed, not my exercise regimen nor my meal plan, but I have lost 26 pounds in 7 weeks! It just kind of fell off, I guess. So while the studies say that insulin, like many of the oral medications, may cause weight gain by making you hungrier, it did the opposite with me.
I must admit however, that I have had a lot of problems with fluid retention since I started insulin therapy. My doctor increased my diuretics a tad bit and although the swelling has not gone away, it is down to tolerable levels. So I don't think the edema is a real factor for me in weight gain or loss, unless we are talking a few ounces one way or the other, depending on the day.
As far as the food problem is concerned, that's a toughy. I would recommend a visit to a registered dietician to help you develop a workable meal plan. I did and it made a huge difference in my eating habits, as well as my mental outlook. Ruthie A. firstname.lastname@example.org
Dorothy P's January 3 reply to Jon's January 2, 2003 - Hi Jon, I have to add my prayers and concerns about your decision to discontinue Coreg. I just remember how often you admonished other CHFers to continue taking their meds. I certainly am not a doc but I can tell you the meds have really helped slow my heart rate down, which I assume has taken a lot of stress off my heart. My heart rate was 100+ when I was diagnosed and now it runs more like 72.
I can't begin to tell you how very much I have learned from your site. Even though I have 2 college degrees, I have come to rely on your no-nonsense approach and understandable explanations of technical information. You will never know how happy I was to find your advice to ask questions and not act like a bump on a log! I was diagnosed with CHF in April, 2001. You can imagine how shocked I was to be told I had CHF and was a perfect candidate for a heart transplant! I learned the hard way that docs are mere mortals who can make huge mistakes.
After suffering from horrific head pain for years (trigeminal neuralgia) which was caused by a blood vessel wrapped around a nerve, I had brain surgery in an effort to find relief. The surgery caused a stroke, which in effect scrambled my brain and as the sensation returned, so did the awful pain. You can bet I was not about to let anyone tell me I would be better off with a heart transplant!
I just pray you will be extremely cautious in your decision-making but I would be the first to back your final decision. Best wishes to you and yours, Dorothy. DPowell806@aol.com
Jon's January 3 reply to Dorothy P's January 3, 2003 - Hi Dorothy, I thank everyone for their concern, but this is the result of a very long and complex thought process. It's time in my own personal treatment to turn left when everyone else wants me to turn right; nothing new there, believe me. <g> Results? I have no idea. Only time will tell. Caution does not mean taking no chances - it means taking carefully considered chances. It's easy to forget that. ;-) Jon.
Michael S' January 3 reply to Paul R's January 2, 2003 - Hi to all, Paul, I was concerned abut this since my doc said I would need oxygen at higher elevations. I was headed south (to warmth) last winter so I asked him if I would need oxygen for my trips over the passes. I guess I misunderstood him initially. He said that I may experience some SOB if I was hiking or until I became accustomed to the lesser oxygen levels. He told me he was refering to oxygen only if I planned to do some skydiving at 10,000 feet or more. I had mentioned to him that at one time I had considered parachuting. I had no increased problems with my breathing last year up to 4000 feet. This year I plan on Albuquerque and Denver, so we'll see. <g> Michael. email@example.com
Katherine H's January 3 reply to Paul R's January 2, 2003 - Hi, I would be interested in hearing about altitude changes too, since I have friends in Los Alamos, New Mexico at about the same altitude as Santa Fe. I want to visit them this year. I do know that at Thanksgiving when visiting San Diego I went from sea level to about 4,000 feet with no problem but that next 3,000 feet scares me.
When I lived in Los Alamos years ago, some visiting parents including my own father who flew from Nebraska to Los Alamos, ended up in the hospital because they simply could not breath okay. It forced those with weak hearts into a heart failure/breathing problem. We called it the visiting parents syndrome and passed around tanks of oxygen to those whose parents were visiting next. firstname.lastname@example.org
Maggie, January 3, 2003 - Hi, I've been a lurker for some time and feel this group can use some inspiration! I'm nearing my first anniversary of dying from CHF. To make the story short, I was rescued from the parking lot of the marina where I live on a sailboat by neighbors. They called an ambulance when I could not breathe. I'm not sure what they did at the ER but I was aware of my situation and what was happening to me.
At one point I remember hearing a loud voice saying, "People are praying for you" and was denied entrance to somewhere. I remember thinking, "But how does anyone know? My family is 1500 miles away and nobody here knows how to contact them." I felt very peaceful and not afraid. About that time, I heard the voice of a local friend calling my name and I came back. When I awoke next morning, I heard the doctor saying, "she could not have recovered so completely. It's not possible." It seems that folks in the marina came onto the boat and got into my computer, found my address book and just started calling people. My family got prayer circles going immediately. My reward was life. Their reward was having concrete evidence that prayer works miracles.
My doctor told me that 1/3 of my heart was dead and there was nothing more they could do for me and sent me home. He later told me that he thought it was just "in shock" and I was doing too well for what I went through. I don't dwell on my illness. I take my meds now, watch my diet, and give thanks every day for my many blessings. I live alone with my faithful dog, work 4 hours every day, and try to keep a cheerful outlook. I am convinced that God, working through the mind, is the Great Healer. Keep the faith. email@example.com
Valerie's January 4 reply to Paul R's January 2, 2003 - Hi, I went to Germany with an EF of 20% and later to Jackson Hole, Yellowstone. Basically, the doctor told me to stay under 10,000 feet and if I couldn't breathe, not to stay too long. Frankly, I had no trouble at all. More recently and for no obvious reason, doc turned down my idea of Lake Tahoe because of altitude. I went to Las Vegas and San Francisco instead. Now, I've had my second bout with CHF after 7 good years, I am more worried about how to eat out while I travel, paranoid about sodium. Talk to your doctor, Val. firstname.lastname@example.org
Joe S' January 4 reply to Michael S' January 3, 2003 - Hi, Regarding higher elevations, 3 years ago I moved from the beaches of California to 5200 feet in the eastern Sierras. Yes, the altitude change took awhile to adapt to, but the clean air, low humidity and less stress more than compensated for it. When I first got here I could only walk 100 yards or so. Now I am walking over a mile up and down small hills. Of course, I also had my aortic valve replaced 10 months ago.
Regarding diabetes, for the first time for as long as I can remember my glucose level is below 120. I contribute this to the move, exercising, eating right and lowered stress. I have never taken medicine for diabetes. Joe S. email@example.com
Jim L, January 4, 2003 - Hi, I don't see anyone discussing anxiety on the site. Does anyone besides me have a problem with this when the difficulty breathing starts. If you do, would you tell me what medication you use? I would appreciate it much. Thank you, Jim L. firstname.lastname@example.org
Jon's January 4 reply to Jim L's January 4, 2003 - Howdy-doo Jim, If a person doesn't get anxious when unfamiliar SOB starts up, he's a calmer man than me! <g> Maybe one reason it comes up seldom is because many of us are used to it by now, I don't know. Jon.
Tom S' January 4 reply to Jim L's January 4, 2003 - Hi, Back in the early days 6 or 7 years ago, of the onset of CHF symptoms, which included not being able to catch a decent breath, I suffered through a lot of anxiety at first; then I realized it was aggravating the problem. As Jon puts it, I taught myself how to breathe without becoming panicked and it has worked for me ever since. Sometimes at night I wake up feeling like I am suffocating so I just relax and get what breath I can. Eventually I get back into what has become a normal breathing rhythm. Until conquering the anxiety I had a serious problem. Relaxing mitigated it a lot. email@example.com
Sheryl C's January 4 reply to Paul R's January 2, 2003 - Hi Paul, In November I went to a dog show in Prescott, Arizona, which has an altitude of around 5,000 feet. I did okay with that, but was a little with exercise. I just would slow down and take my time. The short visit to Sedona, at 7,000 feet didn't work at all. I was very SOB there. I was with a lady who is overweight and she had problems breathing also. The ride down the mountain didn't do much for my heart. Gulp, blindfold please! It really depends on what class CHFer you are, I guess. Good luck if you try it, Sheryl. firstname.lastname@example.org
Natalie K's January 4 reply to Jim L's January 4, 2003 - Hi, Jon, your answer for Jim was a hoot. I do believe I have had some SOB just because of my anxieties, and that this SOB/anxiety can become a really vicious circle. I always try to tell myself it's all in my mind. Some day I know it will not be in my mind but so far, attempts to calm myself have proved that my SOB was either in my mind or of short duration.
Jim, I saw on the American Lung Association site (I hope I have their name right; the TB people), "When you can't breathe, nothing else matters." Now that's the pluperfect truth! I dread dying that way. email@example.com
Dennis D, January 6, 2003 - Hello everyone, This site is fantastic. Almost 3 years ago, at the ripe old age of 27, I suffered a heart attack while lifting weights at a local gym. I was very healthy, no smoking or drugs and only the odd scotch or beer. Unfortunately, my left anterior descending artery dissected, caused a clot, then cardiac arrest, causing a few days on a ventilator followed by a nasty case of ARDS and then all of the usual CHF symptoms. I was told I would not survive without a transplant.
Well here I am still alive and no transplant. Through excercise and nutrition I managed to get back on my feet and get back to living. My wife and I wanted to travel, so last September, after careful discussions with my cardiologist, I took myself off the list and went to Cuba. So far, so good. Although my ejection fraction is 30% I feel great, just a bit slower mentally and physically. Although my doctors are still telling me I will need a transplant, I am hopeful that I can stay healthy for a long time until science provides a better option.
Is anyone out there on a similar quest, meaning avoiding a transplant if possible)? As well, the info in Nutrient Stew regarding Co-Q10, taurine, and L-carnitine is great. What time of day have people been taking doses of this stuff relative to typical CHF meds? firstname.lastname@example.org
Jim Devine, January 6, 2003 - Hi, I've been away from Jon's Place a long time. I'm glad I revisited. I just read to and fro e-mails regarding Jon's decision to get off Coreg. I just came off it too and my doc is not happy either, but I was only on it for a few weeks; my second try on it since 1/15/02 when I was diagnosed of DCM/CHF. I had difficulty breathing from Coreg. I have had moderate relapsing and remitting asthma since I was a child and Coreg seemed to aggravate symptoms.
My doc has put me on the anti-arrhythmia med Covera (varapamil) at 180mg. My asthma symptoms abated in a few days but I seem to feel more tired than usual by noon. I'm not sure about Covera. I just read something scary on www.chfpatients.com saying that these CCBs may reduce heart pumping strength and increase risk of mortality (except for amlodipine). Any comments on this or on beta-blocker reactions in asthmatics? Thanks, Jim. email@example.com
Unmesh, January 6, 2003 - Hi, I came across this great site today for the first time. Thanks to Jon and all others for a wonderful job. I am writing regarding my father. He suffered dilated cardiomyopathy about 3 1/2 years back. He was taking 6.25mg Coreg per day (a higher dose will lower his blood pressure) but suffered another mild CHF episode last month due to fluid retention. During this, his pulse rate went up to 110. To reduce the pulse rate the doctors doubled the dosage of Coreg, which decreased his pulse rate but it also reduced his blood pressure. To avoid this side effect of lower BP the doctor has now changed the beta-blocker from Coreg to atenolol. This has brought down his pulse rate to 78. Does anyone know how is atenolol different than Coreg? Is one better than other? Has anyone experienced this type of problem? Any feedback will be very welcome. firstname.lastname@example.org
Jon's January 6 reply to Unmesh's January 6, 2003 - Hi, Like the Coreg page explains, Coreg is both a beta-blocker and an alpha-blocker. Other beta-blockers are not alpha-blockers, so they don't reduce blood pressure as much. Jon.
Myrtle C, January 6, 2003 - Hi, I am discouraged and fearful. My cardiologist has decided that my weight is the problem more so than my CHF. I bugged him to do a BNP blood test. When it came back within the normal range, he said I must lose weight. To lose I need to exercise, and the fatigue and chest pain won't allow me to do much of anything. I have not lost weight in the past 3 weeks. At this point I see myself being in the "old rocking chair" before long. I try each day to do some type of activity but I get so tired with breathlessness that I dread facing it again the next day. The depression is more of a problem, which compounds the feeling of fear and loss of hope. I need prayers! Thank you. email@example.com
Sheryl C's January 6 reply to Jim L's January 4, 2003 - Hi Jim, I would say the fear factor decreases with time just because the human mind can't sustain a high level of fear, and function. At least I couldn't. The fear leveled off for me after the first year of living with my diagnosis. Talk to your friends or family about your fears. Do a Google search for breathing exercises and learn to do them. They give you a feeling of some control over the anxiety.
I always say we have to go through the grief process for our old lively selves. The end of that is acceptance. By acceptance, I don't mean giving up. You can go back and forth in the stages throughout the process. I think our physical level of well being goes up and down so many times that we just get used to it. Just accept that some times we can be afraid, Sheryl. firstname.lastname@example.org
Cat's January 6 reply to Jim L's January 4, 2003 - Hi, I also have emphysema and thought some of you might benefit from the following tips at this site. I've found it helpful when sudden SOB (shortness of breath) strikes and panic sets in: http://emphysema.net/panic.html. Cat. email@example.com
Patrick M, January 6, 2003 - Hi, I recently saw a tv program where a guy said that coral calicum was like a cure-all for everything. He says that our bodies are acidic and become more and more so as we age and it should be alkaline. According to him, the New England Journal of Medicine and he American Medical Association have stated that coral calcium is a cure for cancer. He also said that coral calicum will lower blood pressure and help our cholestorol levels. Acccording to him, if we get the Ph levels of our body to a good alkaline level and get 2 hours of sunshine a day (for the vitamin D) we could live to be over 100 years old.
Has anyone heard anything to the contrary? Is this guy full of it? He says there are numerous doctors and Nobel Prize winners who agree with his way of thinking. He says that people in Japan all have a high intake of coral calcium in their diet and that's why they live too be so old without any health problems. Has anyone in the CHF community used coral calcium with good results? Thank you, Patrick M. NarleyHarleyGuy@webtv.net
Cat, January 6, 2003 - Hi, I read in the Sunday paper that people on Medicare may soon find that more doctors are shutting their doors. Because of a federal accounting error, the amount that Medicare pays physicians will drop by 4.4% starting as soon as next month. The article went on to say that payments had already been cut 5.4% last year and that they would drop more in the next 3 years. Doctors nationwide could lose billion of dollars by 2005 at the same time that their medical malpractice insurance and other costs are rising dramatically, putting entire medical practices in the red. Twenty-five percent of physicians now limit the number of patients they treat. The US senate only has 4 days to prevent the cuts from taking effect. To contact your senator, visit http://capwiz.com/ama/issues/alert/?alertid=26171 and click on Medicare Physician Update on the left for further instructions and more on this. Cat. firstname.lastname@example.org
Cecil, January 6, 2003 - Hi, Happy new year to everyone! I am taking 200mg amiodarone (Cordarone) daily and have been for 2 years. Now my left hand shakes on occasion, usually at least once a day or more. My primary care doctor has found problems with my thyroid through blood work and I go for a thyroid scan tomorrow. My heart doctor does not want to stop the amiodarone and wants the primary care doctor to treat the thyroid. Is there another med I can take instead of amiadarone?
My doctor caught one rapid heart beat episode when he discontinued my Coreg and I have been on amiodarone ever since. It is such a scary med and now with this thyroid problem I want to be finished with it. Have any of you experienced similar problems or have any suggestions for me? email@example.com
Jaci B, January 6, 2003 - Hi Jon, I wish you all the luck in the world as you get off Coreg. It sounds as if you have done all the necessary research and you are planning ahead to replace coreg with others to pick up the slack, so to speak.
I love your attitude about dying. I feel the same for me with my health problems this past year. My husband does not quite understand, but I have told him that sometimes it feels like a fatal diagnosis would be a welcome thing versus living 40 more years with chronic pain due to my fibromyalgia.
My hubby takes Coreg too and has never been able to get anywhere near a therapeutic dose on it. It makes him feel so lousy he says it is just not worth it. I totally support him making his own decisions on the meds. No one else ever has to walk in my shoes. I sincerely hope you have had a lot of improvement in your EF and that it manages to stay high. You are in my prayers. Do keep us posted. Jaci. firstname.lastname@example.org
Cat, January 6, 2003 - Hi Jon, Dr. Atkins will be discussing his diet and taking questions tonight on Larry King tonight. I just thought you might want to check it out. Cat. email@example.com
Jon, January 6, 2003 - Hi everyone, Cat's post reminded me of something I forgot to mention in my "Atkins Diet update" earlier. Due to government labeling rules that cater to the food industry, do not assume zero carb foods have zero carbs! Take heavy cream for instance. It usually lists a serving size of one tablespoon. That's so they can call one serving zero carb when in fact a cup of cream has about 8 grams of carbs! So if a food product has a very small serving size, watch out! Assume that if it says zero, it means 0.5 grams and if it says less than one gram that it means 0.9 grams. This can make a huge difference to diabetics and dieters! Jon.
Tom S' January 6 reply to Dennis D's January 6, 2003 - Hi, What's sauce for the goose isn't always sauce for the gander, meaning there is probably no stock answer on what is best for each and every individual faced with the transplant conundrum. I suppose the best advice anybody could give you is to get more than one medical opinion. It might be expensive but just remember a heart transplant is a treatment, not a cure. firstname.lastname@example.org
Natalie K's January 6 reply to Cat's January 6, 2003 - Hi, Great advice on panic attacks! No one ever told me these coping techniques before. Thank you so much! email@example.com
Willie, January 6, 2003 - Hi, I'm glad that I found this site and this board. It's good to read comments and info from patients. On September 6 of 2202 I found out that I have diastolic CHF. I also have diabetes, high blood pressure, had a 5-vessel CABG, GERD, high cholestrol and sleep apnea. My meds are insulin, Zocor, prinivil, lopressor, folic acid, rabeprazole, Lasix, potassium and of course aspirin and nitro. Reading this board I know very little about chf and about my particular case. I guess I have been in a 3-month case of denial. I have not worked since September. I'm very confused at this point.
I guess I'm looking for some advice on what I should be asking at my CHF clinic and whatever else advice that can help me. Thanks for this site, Willie. firstname.lastname@example.org
Julia H, January 6, 2003 - Hi, I'm wondering if anyone else has had vomiting as a side effect for Coreg. Also, upon starting Coreg my blood pressure dropped too low causing me to pass out. I am wondering how common this is. Does it get better? Thanks, Julia. Juliahhenry@msn.com
Ruthie A's January 7 reply to Willie's January 6, 2003 - Hi Willie, Welcome! I have diastolic dysfunction too, as well as diabetes, GERD, severe arthritis, etc. It seems as though once we develop one problem, our entire body goes down the tubes! I am glad you realize you have been in denial. Overcoming our natural tendency to ignore bad news is a large part of our battle.
Now that you understand the importance of learning about your condition, check out all the links available through the Site Index. Most importantly, read The Manual first! It will answer a lot of basic questions you most likely have. After that, check out the Diastolic Dysfunction page. There is a lot of good information on that page alone.
Make a list of questions for your CHF doc as you read. Then make sure he answers all your questions in "people-English" so you can understand. The most important advice I can give you is to develop open communication and a working relationship with your CHF doctor and the supporting nurses. That way you can ask questions, bring up your concerns, and get clarification about what is happening to you. Ruthie A. email@example.com
Kathy, January 7, 2003 - Hi, What exactly is digitalis toxicity? I confess I wasn't watching the scales every morning like I should, so the week before Christmas found me decompensated, with bronchitis/pneumonia. The docs upped my Lasix and added zaroxolyn, first 2 tabs, then one a day for 2 days, then one every other day, then within 6 days took me off the zaroxolyn and decreased my Lasix to my original dose.
Yesterday my doc said, "Your kidneys can't take it, and the digitalis is too high as well," which he said explained the constant nausea. So what do they do for the too high dig level? I have been watching the sodium level in my food so why did my fluid creep back up? Where did they get the time line of 4 to 6 weeks to recover from pneumonia? I was just starting to not feel exhausted all the time, I had 3 good weeks between Halloween and Thanksgiving, now I'm back to feeling like I did when I first got out of the hospital.
I'm sorry, I'm just having a bit of a tantrum here. firstname.lastname@example.org
Jon, January 7, 2003 - Hi everyone, First, I have placed the topics online that you rated in order of how you rated them. You can view them at www.chfpatients.com/text/topics.txt. Thans to Janet for reminding me to do this!
Second, just for your information, my pages are not being updated right now and the mailing list is on hold. That's because due to a neck and back problem caused by looking down at my fingers while I typed for the last 7 years <g>, I have to learn how to type properly. I am learning as fast as this tired old brain can learn. I am keeping up on my research and reading, though. Jon.
Tom S' January 7 reply to Patrick M's January 6, 2003 - Hey, I need to show you some swampland and a couple of bridges I am trying to sell if you believe the infomercial hype about anything, especially the ones that offer a cure-all based on some pseudo-scientific smoke and mirrors study. email@example.com
Gino's January 7 reply to Kathy's January 7, 2003 - Hi, Your doc means that in your blood the concentration of digitalis (digoxin) is far above the permitted level that wil benefit you - the therapeutic dose - and it is beginning to cause ill effects. Nausea is often the first complaint related to this.
You have experienced something very common with using very strong diuretic therapy like adding zaroxolyn to Lasix. The diuretics lessen your kidney's ability to expell the drug from your body, so digitalis accumulates and may cause adverse reactions. Your doc is very wise because in such situations often there is also a low blood level of potassium and this together with a high level of digitalis may trigger harmful arrhythmias.
About fluid retention: You should remember that CHF is a chronic condition with phases of relatively good compensation alternating with phases of decompensation. Infections like lung infections can trigger a worsening episode of CHF independently of sodium intake. Ciao, Gino. firstname.lastname@example.org
Ben B, January 7, 2003 - Hi, I can't believe I passed my SSD 3-year review! I got the notice today. I know it was a close call and they are going to do it again in 2005 but for now I can keep my health insurance! I am still going to try working, but at least now I can have a trial work period. Don't lose heart anybody. email@example.com
Charles D, January 7, 2003 - Hello, I found this site this evening after returning from my doctor. He has started me on Coreg and Altace. I also am taking Advicor for lipids and Amaryl for type 2 diabetes. I am concerned about the Coreg and Altace together. I want to give them a fair try, however. I had a CABG at age 36 in 1984 after an MI, 2 subsequent MIs, 3 stent placements, countless angioplasties, etc. I had one bout with CHF in 2001 and now having real breathing difficulties. I would appreciate any comments about the Coreg and Altace. Thank you, Charles. firstname.lastname@example.org
Jon's January 7 reply to Charles D's January 7, 2003 - Hi Charles, I don't understand your reservations. Can you be more specific? These 2 drugs are straight from the official CHF treatment guidelines: an ACE inhibitor and a beta-blocker. Jon.
Staci H's January 8 reply to Jim D's January 6, 2003 - Hi Jim, I just read your post and I have to tell you that Verapamil is contraindicated in CHF because it will make CHF worse. Take it from someone who has been through the experience. Jon, you are in my prayers regarding your decision about Coreg. I finally started the Atkins' program and have been averaging a weight loss of one pound a day. It makes me want to stay on the induction phase till I get all the weight off! I hope that everyone had a wonderful holiday season. email@example.com
Cat's January 8 reply to Staci H's January 8, 2003 - Hi, Verapamil can be prescribed for DHF. I took it for years in addition to my other medications.
Regarding asthmatics and beta-blockers, some people may be able to tolerate the drug if it is introduced slowly in small increments. I'm glad to hear that the Atkins' diet is working for you. My husband and I have been on it for quite some time. firstname.lastname@example.org
Dawn, January 8, 2003 - Hi, This site is like a breath of fresh air. I was diagnosed with IDCM 09/2002 during an 8-day hospital stay after an emergency admission. I completely understand Jon's decision to taper off his Coreg starting tomorrow. It seems that there are so many things we CHFers are unable to control that sometimes we just have to be a little hard-headed. It takes a great deal of determination to prevent our lives being defined by our limitations, something I never had to do before, and by where we will be when it's time to take our little pills. I'll have a good thought for all of "us". email@example.com
Trish L, January 8, 2003 - Hello everyone, I have been without a computer for several months but am enjoying catching up on old posts. My news is that the surgeon at my transplant unit will not put me on the transplant list until I am much closer to my ideal weight.
Please keep me in your prayers as I face this struggle. Words of encouragement and advice are always welcome. God bless you all, Trish. firstname.lastname@example.org
Chuck H, January 9, 2003 - Hi, I was on Coreg for almost a year and seemed to have problems. I told my doctor and he switched me to Lopressor. Almost instantly I had positive results, my first with beta-blockers since I had tried many that made me worse. Coreg seemed exactly like all the rest in spite of its FDA approval for CHF. Just plain old Lopressor (not timed release) did the trick for me and I am getting the results I had expected from Coreg: lower pulse and less arrhythmias. I'm still only at 25mg per day of Lopressor though, very slowly titrating up. email@example.com
Theresa, January 9, 2003 - Hello to all and my prayers are with you everyday. I know that CHF is extremely difficult but if you can somehow, smile a little ok, that helps me. I need to find a CHF doctor in my area and was wondering if anyone could suggest someone in the Raleigh/Durham, North Carolina area. Thank you for your help and may God bless all. firstname.lastname@example.org
Staci H's January 9 reply to Cat's January 8, 2003 - Hi Cat, Thanks for your reply. The only information I have about the verapamil is what my CHF specialist from the Cleveland Clinic told me. He said that verapmil does the opposite of what we are trying to achieve in heart failure. One way it does that is by causing us to retain fluid. I can only go by my experience. My heart function had been stable with an EF between 45 and 50%, and my left ventricle had returned to normal size. My ex-cardio put me on verapamil and 6 months later I was in severe fluid overload with my left ventricle increasing in size to 6.5, severe hypokinesis and my EF lowered to 35! The CHF specialist took me off verapamil and added Coreg and I'm doing great now! I am only on 3.125mg of Coreg because every time we try to increase the dosage, I have a problem with my asthma. I would be interested in hearing of your Atkin's experience! email@example.com
Ruthie A's January 10 reply to Staci H's January 9, 2003 - Hi Staci, Verapamil is a calcium channel blocker, and is not a good thing to give to CHFers with systolic dysfunction. It does bad things, as you unfortunately have found out.
However, those same calcium channel blockers are thought to be effective for CHFers with diastolic dysfunction, as in Cat's case. Hence the confusion. I wish there was some way to keep all these meds straight, don't you? Ruthie A. firstname.lastname@example.org
Jon's note: Such drugs may also help CHFers who also have pulmonary hypertension
Michael S' January 10 reply to Jon's January 7, 2003 - Hi, Now I am really confused. I have an ICD implanted, am on Lanoxin, Coreg, Atacand, amiodorone,and aspirin therapy. My EF is 30 to 34%, up from 20% a year and half ago.
I just looked at the official heart guidelines and they do not recommend amiodorone with beta-blockers like Coerg. I have VF, a-fib, and really crummy electrical signals in my heart, also with some slight VT. I was put on amiodorone to stablize my arrhythmia before they could implant my ICD. At this time my QOL is great. I am planning on walking a 7K race later this year (not running) if I do not decompensate. Any insights?
PS. I believe I feel the way I do as the result of several things I do. I pray to God daily and thank him at night, I use a treadmill from 2 miles per hour to 4 at present with a 3 to 5% incline part of the 30 minutes. I do weight circuit training as okayed by my cardiac rehab and CHF specialist. I swim 3 to 5 days a week. I could not walk without support when I left the hospital. I also tell myself that I feel great and it works to help me keep from being morbid about my heart failure. I do not put off things till someday like I used to do. Anyway, <lol> to all and God bless, Michael. email@example.com>
Jon's January 10 reply to Michael S' January 10, 2003 - Hi Michael, I am glad you are doing so well! The guidelines actually say not to use amiodarone to prevent general sudden death in CHFers taking ACE inhibitors and beta-blockers. That does not mean it isn't okay to use for arrhythmia control. In fact, guidelines say class 3 anti-arrhythmics like amiodarone (Cordarone) are preferred over other classes of anti-arrhythmic drugs. Your ICD is the preferred method for preventing sudden death in CHFers so your treatment appears to follow current guidelines pretty well. Jon.
Joseph P, January 10, 2003 - Hi, I am going in the hospital for the start-up of a drug called Tikosyn and a cardioversion. I was doing okay without an anti-arrhythmia drug and all of a sudden the arrhythmias returned. Has anyone tried to follow the event leading up to an arrhythmia? Like what kind of activity you were doing, etc. I seem to have mine when I am driving or riding. What gives? Joseph P. firstname.lastname@example.org
Charles D, January 10, 2003 - Hi, I have tried to read all the information on this site but am still a little confused. After a long history of MI and blockages, I finally developed CHF. I lost my job and my insurance, and had to move to my sister's. My new doctor is very enthusiastic about Coreg and Altace, but these drugs are way more expensive then the atenolol and Lopressor that I was taking before. I really don't know what to do when the supply of these meds is gone and would appreciate any input. Thank you, Charles D. email@example.com
Bee, January 11, 2003 - Hi, Do any of you have any knowledge of a beta-blocker named atenolol? I can't take metoprolol any longer. It gives me hallucinations, along with other fun side effects. My cardiologist mentioned today that he is considering trying atenolol. I'll have to make a decision by Wednesday.
I was on Coreg for about 4 years. My EF raised from 19% to 42% in that time. I have an HMO and Coreg is no longer available through the formulary, so they put me back on metoprolol, even though I'm known to be allergic to it and have serious problems with it.
I'm sorry for introducing myself this way. I have had CM/CHF for about 16 years, and have been in dire distress a couple of times but have come back pretty strong. The relapse I'm in now is pretty bad, though. They have been trying to drain me with just additional diuretics. HMOs so hate to hospitalize anyone. So far I am seeing a small improvement, but for the amount of increase in furosemide and spironolactone, it's not anything like they said I needed to have. Twenty pounds immediately was the goal and I'm bouncing back and forth with 7 pounds loss.
I looked up this medicine on Google and did not like the sound of things with it. I have asthma and it seems all the beta-blockers affect that. I'm sure this sounds like a rant and maybe it is. I'm very tired of this disease. It's as if you can almost get out from under it, but not quite. Then out of the blue it has you again. Didn't they tell us life begins at 40? Boy, what liars. Bee. firstname.lastname@example.org
Jon's note: Bumex would get that fluid off in 24 hours
Ray Bilbo, January 11, 2003 - Hi, From what I have read, you are all the lucky ones. Thirty percent of all heart attack victims never get up. Another heart warming fact is that around the globe over 120,000 people did not wake up today. You are among the survivors! Good job, you have another day in paradise. I had a heart attack in 1997, catheterization and stent 1999 and so far am doing well on a beta-blocker, Zocor and today, an ACE inhibitor, which is why I visited the site. email@example.com
Gino's January 11 reply to Charles D's January 10, 2003 - Hi Charles, I'm very disturbed about your problem. Living in Italy where we do not have problems of insurances and where the healthcare system is for the most part public and paid for for all people, I pray every day we do not adopt the healthcare system you have in USA in order to avoid for my patients choices like in your case.
However, apart from these considerations, atenolol and metoprolol are good beta-blockers and there are many clinical studies on their use in CHF. This is true overall for Lopressor (MERIT trial). For now we lack studies that compare Coreg directly to Lopressor, although a trial that evaluates this wil soon show results.
Altace is an ACE inhibitor, a class of drug completely different from beta-blockers. You should also take an ACE inhibitor and in this case I would choose a less expensive one. European guidelines on CHF have more choices than USA guidelines.
From my experience, I have the "feeling" that what it is really most important is the drug dose. Your new doc is very confident with Coreg and Altace but would probably change your therapy in order to play the game with a new patient in the "home field." Have you explained your economic difficulties to him? I think that if he is a good doctor, he will help you find an appropriate solution to your problem. Ciao and good luck. firstname.lastname@example.org
Dawn's January 11 reply to Charles D's January 10, 2003 - Hi, Smith-Kline has a patient assistance program, at least for Coreg, for those who qualify. My doctor's office supplied the form for me to complete after their portion was filled out. I received the form from them, sent it on, and received 180 each 12.5mg Coreg within 7 days. I also received a 6-month supply of Coumadin the same way. For some reason I was denied Vasotec. Nonetheless, this was ever so helpful. If anyone needs more information that is not available through your own doctor's office, I would be glad to call mine and get addresses, etc. email@example.com
Jon's note: Drug assistance links are on the Links page also
Staci H's January 11 reply to Ruthie A's January 10, 2003 - Hi Ruthie, Thank you for the info on verapamil, you too, Jon. I hope everyone has a great weekend! firstname.lastname@example.org
Valerie, January 11, 2003 - Hi, You all seem so knowledgeable. I have recently come to your board after a second CHF hospital visit and an ICD implant. The last one was 7 years ago. I have an EF of 15%.
My medicines have changed. I'm off Acupril and the terrible cough I had is gone. I am on furosemide, Coreg, Digitek, Cozaar, Klor-Con, Coumadin, Pravachol and Paxil. I am trying to absorb as much as I can. I realize that much of this can cause problems and tests need to be done periodically. I'm aware of PT/INR and I need to be able to read numbers. I'm working on it. Can someone help me by giving me a quick run-down on exactly what tests I should be looking for and how often? Val. email@example.com
Joe S, January 11, 2003 - Hi, About SOB, when I first noticed all the severe symptoms of CHF like edema, I would wake up in the middle of the night gasping for breath. This went on for several years and lots of misdiagnoses. Now after finally getting a valve job, it doesn't happen as much. For almost 6 months after the valve job I couldn't lie down and sleep for more than 2 hours.
Now my big problem is when any flu comes along that affects breathing, my mind turns it into an anxiety attack affecting breathing and my sleep. Does anyone experience the same and what can be done about it? firstname.lastname@example.org
Jacky, January 11, 2003 - Hi Jon or anyone, Regarding Coreg, is there a generic? Is this the only beta-blocker approved by the FDA for CHF patients? I know it was the first, any others? Are there any other alpha-beta blockers? I am going to challenge my HMO formulary and need to have my facts straight! Thanks, Jacky. Jackymwb@aol.com
Jon's note: No generic Coreg, no other approved alpha-beta blockers. Toprol-XL is also FDA-approved for CHF - see the Coreg page
Hope M, January 11, 2003 - Hi, I am wondering if there is any web site which gives echocardiogram abbreviations and normal ranges. I got a print-out from the echo tech and it has 3 columns: 2D, M-Mode, and Doppler. Between the 3 of them there are 98 abbreviated measurements and none showing what the normal ranges are. I know a very few of them.
Also, just for the record, I had my mitral valve replaced in 1994. Since then, my left ventricle has enlarged quite a bit to 8.3cm and my ejection fraction went down to 30%. My fractional shortening decreased to 13%. I've gotten the diagnosis of dilated cardiomyopathy. However, as I compare the annual echos from 1995 to now, I find that with slight variation, my LV size has remained fairly stable as has EF. My FS has decreased from 19% gradually down to 13%. I think the meds I'm taking have been keeping me pretty stable: digoxin, Toprol-XL, and dyazide.
The only thing really bothering me is the darned fatigue! I know, common problem. Thanks, Hope. email@example.com
Joe W, January 11, 2003 - Hello all and a very happy new year to all. I need help with some info. My cardiologist told me yesterday that I need to get an ICD. I'm not sure about it since he told me it is a new procedure, but very proven. I was told this because of my results from my nucular stress tess results. He told me my heart has no iregular beats, but is very weak. I was told this device will shock my heart to start pumping again if it stops because of another heart attack or something else. I get my medical attention from the VA medical facility in New Orleans. They don't do that procedure here, so they are making arrangements to get me to Houston or Arkansas for this procedure. Any info would be greatly appreciated. firstname.lastname@example.org
Tom S' January 11 reply to Charles D's January 10, 2003 - Hi, When I first found myself pretty much in the same boat as you, I explored several possibilities including the Veterans' Administration because I am what is euphamistically called a Viet Nam Era Vet. To my surprise I found I qualified for medical care and very low cost prescription drugs. I also qualified for a couple of drugs through my regular civilian medical doctors although I only need Coumadin from the outside source. If you are a veteran, that's a possibility. Otherwise, Jon provided a real good list of drug providers. email@example.com
Valerie's January 11 reply to Joe W's January 11, 2003 - Hi Joe, I just got an ICD on December 5th, so it is pretty new to me. However, the procedure is very easy and not a problem. I have had very little discomfort from it. I go back to the surgeon and cardiologist January 20th, but I've read booklets given me and have received a permanent ID card and on request, a travel card from Medtronic. I am constantly surprised at how many people seem to either have or have a relative who has an ICD. There seem to be quite a few of us. All the stories I hear are good ones, Val. firstname.lastname@example.org
Karen K, January 11, 2003 - Hello All, This may sound really stupid but, once a person on disability reaches age 65, is it correct that you no longer receive disability but begin receiving regular Social Security retirement benefits? I assume the amount would stay the same as what one is receiving at that time.
I'm asking because my husband thinks he was told that he will start receiving his retirement at age 62 (which he will) but in addition it was suggested he apply for disability benefits since he is currently completely disabled with MS. He took early retirement a year ago and receives a pension from his former employer. He will be receiving reduced (I believe) Social Security benefits since he is starting them earlier than age 65. Am I correct here?
He was told that he should apply for disability once he starts receiving his SS benefits in March. My assumption is that the disability would cover the period from last year when he chose early retirement over long-term disability payments from his employer. Can someone set me straight? Thanks, Karen. email@example.com
Bee, January 11, 2003 - Hi, Thanks for the notation about Bumex, Jon. I will ask about that on Wednesday when we discuss all these medicine issues. I read up on it and it sounds like it has about the same side-effects as furosemide, yet at a much lower dose rate, 2mg as opposed to 40mg of furosemide. Surely this would be more cost effective for the HMO and I could sure use the relief of getting a big amount of this fluid off toot sweet!
This is a wonderfully informative web site. It was recommended to me by a good friend. There are several through my insurance, but this one has "heart". I like it. I also like your spiritual bent although I'm not Christian. I am very spiritual though and I do agree that there is a power greater than our bodies. I've come to rely on that and be so very grateful for it. It's nice to meet everyone here. Thanks, Bee. firstname.lastname@example.org
Paul R's January 13 reply to Karen K's January 11, 2003 - Hi Karen, I was recently approved for disability with Social Security. If you think your husband might meet the disability criteria, start the application process now. The process can take a long time so the sooner you start, the sooner you get approval. Social Security has lots of information on their web site at www.ssa.gov/disability/. Wonder of wonders, I found some real human beings to talk to when I called their office. They are a bureaucracy of course, but they are really trying to help. Jon has more information on this web site also, Paul. email@example.com
Scott H's January 13 reply to Joe W's January 11, 2003 - Hello Joe, I have had idiopathic cardiomyopathy since 1998 with an EF of 22%. I developed arrhythmia problems about 2 years ago due to a left bundle branch block. I had a pacemaker/ICD implant procedure completed last November. This is to synchronize my heart beat so both ventricles beat together since the electrical block had resulted in desynchronization and also - to me the most important function - to give some protection against a fatal heart rhythm. The resynchronization has yet to show any appreciable boost as far as fatigue goes but has sure given me a sense of stability due to the defibrillator part of the ICD. I would do it again for this reason alone. I hope this helps. Good luck to you and yours! ScottnDotH@aol.com
Louis G, January 13, 2003 - Hi Jon, I just stumbled onto your site and it's the best. I hope everything works out with your new medicine regimen. I was diagnosed with IDCM 4 years ago and am asymptomatic. I take 20mg Vasotec twice daily and my quality of life is fine. Ever since I was diagnosed, my doctor (who really listens to me) has been doing yearly nuclear stress tests partly because he wants to see my exercise tolerance and partly because he wants to rule out blockages which can be a major cause of CM. They've always come up negative and my endurance is fine.
I stumbled upon the Cleveland Clinic heart site and they state that "when a diagnosis of decreased LV function is made they always do an angiogram as part of the evaluation." My cardiologist (who also has a geriatric heart failure practice) says he sees no reason for it and wouldn't want to subject me to the risk unnecessarily. Now that I've read your site cover to cover twice, I see that you also mention that we should seriously question our doctors when they make a blanket statement that we need angiograms. Why do you think some doctors really push for it?
Upon doing some surfing I see that it's a hotly debated issue among cardiologists. All the best and thanks for putting your heart and soul (no pun intended) into such a wonderful and comprehensive site. LouisHGood@aol.com
Jon's note: sheer inertia
Tracey C, January 13, 2003 - Hi everyone, My doctor has been requesting only MUGAs for me lately, no echos. I'm wondering if both are needed or if a MUGA is sufficient. I'm used to seeing all the measurements listed on an echo and the MUGA report basically just lists EF. Should I be having both? Thanks! Tracey. firstname.lastname@example.org
Marley's January 13 reply to Bee's January 11, 2003 - Hi Bee and Jon, I have edema problems that were worsened by Coreg. I've stopped Coreg, increased furosemide dose from 40mg to 160mg per day and Aldactone (spironolactone) from 25 to 50mg, and have gotten only moderate results. I could not regain my previous weight prior to starting Coreg. Somebody wrote about Zaroxolyn and now I note Bumex cited by Jon. Can someone give me the generic name and manufacturer of both and other relevant information or web link, so I can order either? I know Zaroxolyn is not available in the Philippines. email@example.com
Jon's January 13 reply to Marley's January 13, 2003 - Hi Marley, Be careful. Different diuretics may work on different parts of the kidney and one may be much more powerful than another. The Manual says that one mg of Bumex = 10mg of Demadex = 40mg of Lasix. This also means that your electrolytes may get out of whack without careful monitoring and that can kill you. As far as ordering, any search engine should pop up many online sites that sell these drugs, although I cannot vouch for any of them. For drug info in general, use the links page. Start here for using the site to best effect. Jon.
Lori K, January 13, 2003 - Hello everyone, Thanks to all who helped me with my overtesting experience with my new CHF doc. I have had my echo and MUGA done, showing an EF of 63% and 67% consecutively on my one-year follow-up from diagnosis. My CHF doc also wants me to have a right heart cath. I wanted to know why, since my numbers look great and his nurse said they do them yearly on all patients.
Granted this is a transplant center but can anyone tell me if this seems normal. There was no indication of any problem on the other tests and the CPX is yet to be done.
I am only on 15mg Altace and 2.5mg Zebeta because of my asthma. My original EF was 38 to 40% a year ago and I was labeled as having IDCM. Has anyone ever heard of people having an increase in EF like this with minimal drug therapy? Does it stick? I don't want to get too excited because I know how much this disease can change, but I really was shocked to hear of such a significant increase. What do you think about a yearly right heart cath? I really appreciate any insight on this, Lori K. firstname.lastname@example.org
Jon's note: I think a yearly right heart cath for no discernible reason is a very bad idea
Clara D, January 13, 2003 - Hi everyone, I attended a lecture by a cardiologist today and picked up a tidbit of information which was new to me and might be of interest to some of you also. The doctor was talking about why some people with low ejection fractions experience significant symptoms and some do not. According to her, if the ejection fraction lowers slowly over a period of years the body often is able to compensate so that the patient never experiences symptoms. This is the first explanation I've heard which explains my own lack of symptoms.
Now the question is, how long can one remain compensated? My cardiologist thinks that my idiopathic dilated cardiomyopathy started sometime before my left bundle branch block, which was discovered in l977. It wasn't there in l973. That means I've had a slowly lowering ejection fraction for about 25 years. For over a year now, since I was first diagnosed with IDCM, it has been less than 15% and it still has not really slowed me down. Nothing I've read or heard before gave me the impression that this was possible.
Of course, the disease is progressive but maybe not necessarily as fast or debilitating as we thought, even without drugs. My cardiologist keeps telling me that most treatment for this condition is symptom driven and I'm beginning to see why. Let the body do it's thing as long as possible. Of course, everyone agrees that you should be on an ACE inhibitor. I couldn't tolerate an ACE or Cozaar but have been on Diovan for 3 months now. My only change since starting on Diovan has been an irregularly irregular arrhythmia for the last 2 months. There is probably no conection to the Diovan, just the progression you might expect as the left ventricle and atrium continue to enlarge.
I want to thank all of you for sharing your experiences, from which I've learned so much, and wish you all a happy new year, Clara. email@example.com
Jon's January 13 reply to Clara D's January 13, 2003 - Hi Clara, The cardiologist's theory is all guesswork, isn't it? If the guess is wrong, the reasoning is wrong as well. My own EF of 13% did not slow me down - after diagnosis and initial treatment - for almost 2 years. Go figure.
The estimate of your conditions' timing also sounds like guesswork. You really can't know whether you have had DCM for one year or three. Lots of us are in that boat and we gain nothing by reasoning based on guesswork. The rest of this post is mainly to prevent a flood of e-mails from hitting my Inbox. <g>
The statistics on deaths and disability from CHF progression make it clear that CHF is indeed as debilitating as we think - just not in 100% of people. People are different and react differently to everything. For "most" people, CHF is a terrible fight; if not now, later.
About the body compensating, it's exactly the body's compensation that over time kills you from CHF. It is precisely the body's compensation that beta-blockers fight, a very good reason to take one before symptoms occur if your heart function is below normal.
Remember that a weakened heart pumps less blood. That means all your other organs get less blood, and thus less oxygen and nutrients than they should. This can weaken your other organs over time if you don't take meds that ease your heart's workload and let it increase blood distribution. Long-term, even your brain gets less blood, thus less oxygen; no small matter.
Your doctor meant that most doctors treat only the symptoms, and he's right. He did not mean that is how it ought to be done! CHF drugs (including beta-blockers) prevent disease progression, regardless of heart class. Trial results back that up. I cannot stress this enough. Jon.
Rick J, January 13, 2003 - Hi, I recieved a call today from the Railroad Retirement Board telling me that I should expect to have my disability denied due to my age (44 years). My cardiologist wrote them that due to CHF, idiopathic cardiomyopathy, EF of 30%, and my LVEDD (left ventricular end-diastolic dimension - how big the heart is when full of blood) measured at 6.5cm by echo that I should be on total disability and can do no work of any kind. My family doctor also stated that I need to be on total disability due to diabetes, hyperlipidemia, advanced degenerative disc disease, severe central spinal stenosis, and 3 herniated discs documentated by MRI. I also have sleep apnea and situational anxiety disorder. I can't believe that they plan to deny my disability due to my age.
It seems they did not even consider my doctors' statements. Any comments from anyone would be appreciated. Thank you. firstname.lastname@example.org
Amelia's January 14 reply to Karen K's January 11, 2003 - Hi Karen, Disability benefits are your Social Security, but given to you early because of disability. One recieves Social Security benefits at retirement, as a widow, or for disability. The sad part is after being disabled for 2 years you are entitled to Medicare but if you are under, I think it's age 55, you can not be underwritten for a supplement insurance policy. Good luck and best to all, Amelia. email@example.com
Clara D's January 14 reply to Jon's January 13, 2003 - Hi Jon, Thanks for your input. Next Monday's lecture will be on CHF and you've supplied me with good questions. As to dating the onset of my DCM, perhaps I should call it educated guesswork. The cardiologists I've talked with seem to agree that my LBBB was likely the result of the cardiomyopathy.
As to treatment, I've made it clear to my doctors that at my age (69) quality of life is more important than length of life. Perhaps that has influenced their treatment advice. I have no illusions about this disease's ultimate outcome and understand how the efforts of the body to compensate eventually fail. Today's lecture just gave me hope that in my case the compensation might last longer than I had thought possible. However, with what looks like the beginning of atrial fibrillation, perhaps I am already moving into another phase, although again with no symptoms other than the arrhythmia which I wouldn't have been aware of had I not been wearing a heart monitor while I was exercising. Thanks for being there and listening, Clara. firstname.lastname@example.org
Prentiss G's January 14 reply to Theresa's January 9, 2003 - Hi Theresa, My CHF specialist is Dr. Kirk Adams at UNC Health Care. I recommend him very highly. He does a lot of reseach in addition to seeing patients. He is highly thought of in North Carolina. email@example.com
Tom S' January 14 reply to Theresa's January 9, 2003 - Hi, Check to see if there is a Sanger Clinic in your area. They have managed to keep me vertical and breathing far longer than originally expected. firstname.lastname@example.org
Clara D's January 14 reply to Theresa's January 9, 2003 - Hi Theresa, There are many good CHF specialists at both the University of North Carolina at Chapel Hill and at Duke in Durham. The important thing is finding the one you can best relate to, which may mean trying more than one. Good luck, Clara. email@example.com
Dorothy P's January 14 reply to Rick J's January 13, 2003 - Hi Rick, I had a stroke in 1995 and applied for Disability in 1999. I kept hoping things would improve but they didn't. I was so very fortunate that a neurologist sent me to a psychologist for testing. He determined that my IQ is officially 79. I really do think it was higher when I was going to college! The psychologist went through a battery of tests with a time limit for each section. The time limit is used to simulate the stress one might encounter at the work place. I believe they have also done extensive testing to determine how long it takes the "average" person to complete each section. I would remember answers later and sometimes found myself unable to concentrate. The most difficult was arranging cards to match the color and pattern of a design.
I do know the damage from my stroke scrambled my brains and I can't help but think that perhaps my CHF, undiagnosed at that time, also was a factor. The disability insurance company approved my application after the doctor determined the damage was done, and he did not expect my IQ to improve. The disability company also sent a representative to my home for a face-to-face visit. He had to hold the med bottles in his hands and write down the prescription numbers off the bottles! I really don't know how many ways they think I could fake something! The rep's final words were to immediately respond when the company sent questionnaires, etc. My case has now been assigned to the Long Term Care Department. Best wishes, Dorothy. DPowell806@aol.com
Emil S' January 14 reply to Rick J's January 13, 2003 - Hi, It sounds like the Social Security Disabillity Determination Office is located next door to the Railroad Retirement Board. Don't give up hope, expect to be delayed every time, then you'll be surprised when it is finally approved. I wonder who knows more about your disability, the Board that denied you or your cardiologist. firstname.lastname@example.org
Bee's January 15 reply to Marley's January 13, 2003 - Hi Marley, My edema was much improved on Coreg but has worsened severely on metoprolol. My dose with furosemide is four 40mg tablets twice a day, and four 25mg spironolactone in the morning and five 25mg spironolactone in the evening. The fluids will not budge. I will find out tomorrow about things and ask about Bumex too. He says we will be making some major decisions. Gulp. Today they called and said they finally got all the miscellaneous labs and test results back.
Please don't try to alter your meds on your own. It's very important to have your doc leading the way. If you don't trust your doc or have not been happy with your care, change docs. You're part of a team and you have to trust your coach. Good luck to you, Bee. email@example.com
Kathy, January 15, 2003 - Hi people, Yet more complaing and whining. They have now discovered that I have diabetes. Luckily they caught it early and frankly I wasn't all that surprised. The two things that are driving me nuts though, are the knowledge that I am again considered in decompensated CHF and the constant nausea.
They are working on the digoxin toxcitiy but the waves of nausea and dry heaves are wearing me out. I am talking at least 20 episodes of it a day. A friend said I should stagger and arrange my meds to avoid nausea. How do I find out how to do that? I am taking 12.5mg Coreg BID, 20mg Lotensin BID, 0.125mg Digitek, 20mg Lasix, Protonix, one baby aspirin, 10mg Lipitor, nitro as needed, 2 puffs Advair daily, and Starlix before dinner. This could begin to be serious. firstname.lastname@example.org
Jon's note: Have they tried anti-digoxin fab fragments - the "antidote" to cardiac glycoside poisinging, which is what digoxin is? Also, how is your blood level of potassium? This can predispose you to dig toxicity if incorrect.
Amelia, January 15, 2003 - Hi Jon, I hope you are doing well. I read your site regarding beta-blockers but with my brain turning to mush I didn't understand too well what the meds do to the heart. I am on 20mg Vasotec twice a day, 40mg Lasix, Coumadin, and 25mg Toprol-XL daily.
My blood presure was 104/74 and pulse 64 today. My cardiac doc said my blood pressure was a little low but wants to raise my Toprol-XL. After finding out that I will be out of town for 2 weeks, he will wait till I come back. Why would he want to raise the Ttoprol-XL? Does it help blood pressure? I didn't think to ask while I was in the office.
I had an ablation last September and it seems to have taken care 90% of my a-fib. Thanks again for all the effort and time you put in this wonderful site for all of us with ailing hearts, but hey buddy, take care of yourself. After all, you are our leader, friend and guiding light. Best to all, Amelia. email@example.com
Jon's note: Toprol-XL does lower blood pressure, although not as well as Coreg. You are on the usual target dose now.
Margaret D, January 15, 2003 - Hi, I know how important exercise is for us with CHF and cardiomyopathy. I know I must have read it somewhere but I can't remember where that weight machines like Nautilus are not recommended. Is that true?
My EP placed no restrictions on his okay letter to the gym. I had been doing fantastically for about a month, then started getting short of breath again. The only thing is that I was using many of the machines at at the gym besides walking on the treadmill and using the ellipical trainer. Is using free weights different from using the weight machines? I hope this isn't a stupid question. By the way, I have dilated non-ischemic cardimyopathy. firstname.lastname@example.org
Jon's note: Free weights are better but machines should be okay, wisely used. Leave more time between sets and don't get carried away. Don't do aerobic and resistance exercises on the same day if it is wearing you out - alternate.
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.