The paperwork never ends The Archives
February 16-31, 2006 Archive Index

Jon 2-16     cable Internet access and posts
Chuck F's 2-16 reply to Tom S' 2-14     pill splitters and the Veterans Administration
Wayne R's 2-16 reply to Charles W's 2-14     CPAP masks experience
Barb N's 2-16 reply to Charles W's 2-14     CPAP masks experience
Jacky B 2-16     Coreg's manufacturer is sending me some pills
Debra S 2-16     Coreg pill sizes, Toprol-XL
Jon's 2-16 reply to Debra S' 2-16     Coreg, Toprol-XL, stem cell therapies
Norma W's 2-16 reply to Tom S' 2-14     pill splitters, and to Candace
Susie M 2-16     exercise, heart class question
Curt H's 2-16 reply to Bobby M's 2-11     fear of dying
Donna H 2-16     chest pain without blockages question
Giorg's 2-16 reply to K C's 2-12     don't let your heart condition stop you
Sandy N's 2-17 reply to Donna H's 2-16     chest pain with no heart artery blockages
Michelle A's 2-17 reply to K C's 2-12     don't let heart failure rule your life
Susie M 2-17     heart classes and stages questions
Susie M 2-17     heart classes and stages
Roger G 2-17     different topics
Norma L's 2-18 reply to Donna H's 2-16     chest pain
Norma L's 2-18 reply to Candace M's 2-14     yes, CHFers can get better
Natalie W's 2-18 reply to Bobby M's 2-11     living with heart failure
Natalie W 2-18     eating low sodium really helps
Mike T 2-18     ICD shocked me 43 times on way to hospital
Gayle A's 2-18 reply to Barb N's 2-16     and to Charles W
Roger H 2-18     much better now!
Tom S' 2-20 reply to Roger G's 2-17     digoxin and Coreg
Jon's 2-20 reply to Tom S' 2-20     digoxin and Coreg
K C's 2-20 reply to Natalie W's 2-18     low sodium diet
Brooke H 2-20     seek advice on how to handle all this
Martha G 2-20     what are effects of too much Coreg?
Hannah K 2-20     question on strenuous exercise and Coreg
Bill R 2-20     how long before improvement feels better too?
Patrick 2-21     seeking cheapest drug prices
Bill D 2-21     EECP, CHF, PVCs, amiodarone - seek ideas
Donna H's 2-21 reply to Gayle A's 2-18     CPAP mask experience
Wadine T's 2-21 reply to Candace M's 2-14     getting better with heart failure over time
Maggie R's 2-21 reply to Patrick's 2-21     Medicare prescription coverage confusion
Gayle A's 2-21 reply to Bill R's 2-20     people's situations and solutions differ
Jon 2-24     had a rough patch
Bill D 2-24     amiodarone, EECP
Debra S 2-26     seek heart doc in London, Ontario
Brooke H 2-26     any ideas why I feel so good?
Hannah K 2-26     Inspra and blood potassium experience
James N 2-26     how do I fast while on Coreg?
Ian L 2-26     question about puffy ankles
Ron L 2-26     FDA tentatively approves generic Coreg
James N's 2-26 reply to Candace's 2-14     yes, CHFers can get better
Jacky B's 2-26 reply to Maggie R's 2-21     I agree that with this plan I am better off
Kathy Z 2-26     Lasix and leg cramps
Courtney L 2-26     seeking a pen pal for support
Lowell P 2-27     really increased BNP levels this time
Jon's 2-27 reply to Lowell P's 2-27     really increased BNP levels
Jane A 2-27     very different Vo2max test
Jon's 2-27 reply to Jane A's 2-27     different Vo2max tests
Peter S' 2-27 reply to Martha G's 2-20     Coreg doses and side effects
Stephanie P 2-27     on and off serious fatigue - seek ideas
Jon's 2-27 reply to Stephanie P's 2-27     on and off serious fatigue
Lowell P 2-27     really increased BNP levels
Anna Miller 2-27     seek end of life treatment advice
Jon's 2-27 reply to Anna Miller's 2-27     end of life treatment
John K's 2-27 reply to James N's 2-26     taking Coreg with food
Ben B 2-27     some CHFers do get better and feel better
Scott Brown's 2-28 reply to Kathy Z's 2-26     cramps can be from potassium levels
Scott Brown's 2-28 reply to Ian L's 2-26     weighing yourself and diuretic use
Ben B 2-28     I've been lucky
Sandy N's 2-28 reply to Kathy Z's 2-26     cramps can be from potassium levels
Debra S 2-28     what happened to Tony M?
James N 2-28     seek studies on stopping Coreg

Jon, February 16, 2006 - Hi everyone, I am having a tremendous amount of trouble with Internet access right now, due to Charter Communications (the local cable company) being unable to keep access available all the time. They are obviously over-subscribed and under-equipped, and so I am just between a rock and a hard place since in my location they are the only broadband option I can afford here - and yes, I know all the options. One minute I am working on posts and the next 5 hours, I have no access. Yesterday, it was late evening before I could even get all my posts downloaded. I am in touch with their tech support but that is the clumsiest process imaginable. I'll try to keep up but it's a nightmare at least for now. Jon.

Chuck F's February 16 reply to Tom S' February 14, 2006 - Hi Tom, Happy Heart day to everyone! A little FYI to Tom and all the VA patients out there - you can get a pill splitter from the VA, in fact I have gotten three to date. I always keep one in my travel bag and one in my cabinet with meds and a spare. In addition, you can also get blood pressure cuffs and a lot of other DME (Durable Medical Equipment).

Wayne R's February 16 reply to Charles W's February 14, 2006 - Hi Charles, If you have apnea, by all means get a CPAP. The provider will have several types of masks for you to try on before choosing. If you have other questions, please e-mail me and I will try to answer them. I've been using one for several years now. Wayne R.

Barb N's February 16 reply to Charles W's February 14, 2006 - Hi Charles, Regarding apnea, CHF and CPAP, you are correct that many folks with CHF have sleep apnea. There are some questions about which comes first, and there are not many studies of whether CPAP therapy improves survival with CHF. However, sleep apnea contributes to hypertension, oxygen desaturation and fatigue, all of which track with CHF, and all three problems have been shown to improve with effective CPAP. Effective CPAP treatment however, means using the stupid thing 6 to 8 hours a night, every night, being titrated to the correct pressure and having a properly fitted mask that doesn't leak. There is lots of information on the web about machines, masks, titration studies. See the web site and message board run by for example, lots of good info there.
     Based on personal experience with CPAP, I found the fog of constant fatigue started lifting after about 2 months, but a lot of that time was getting used to sleeping with the equipment (and finding the right mask) so I would keep it on my face all night. I still get worn out early and often from much physical exertion, but don't feel that my thinking is as sluggish, and I no longer almost fall asleep driving. Do be prepared for vivid dreams as you start getting more REM sleep time.
     Note that CPAP is most effective at treating obstructive sleep apnea. The air pressure from CPAP keeps the throat open and prevents any extra tissue from blocking air intake. Severe CHF may be accompanied by central sleep apnea, which I believe may be related to Cheyne-Stokes respiration. Benefits of cpap for central apnea more difficult to answer. I have seen a few small scale studies suggesting benefit, but there may be more risks also, especially if pressure is not set correctly. Overall however it is probably worth trying, even in that case, if your cardiologist concurs.

Jacky B, February 16, 2006 - Hi, I had tried to phone GlaxoSmith Kline, makers of Coreg, a few days ago but could not get through. I tried again yesterday and asked them when they expected Coreg production to return to normal. They said they didn't know but took my name, telephone number, zip code and dosage, put me on hold then came back and told me to have my pharmacist call GSM and they would send an emergency order! I just received a phone call from my pharmacist to say they expect the order tomorrow! Keep your fingers crossed! Jacky.

Debra S, February 16, 2006 - Hi Jon, I called the pharmacy looking for scored Coreg. They said there is no such thing. Do they have the pill in the lower mgs? Smith Kline also said that there is no such thing. I had to go off the Toprol-XL. It made me feel better emotionally, but my heart started to race and my pressure went way up. This is no fun. It also seems as if everyone has CHF from a virus, where as mine is from a heart attack. Does that make a difference as far as the stem cells go? I've been reading great things about them. You do a wonderful job, Jon. Debra.

Jon's February 16 reply to Debra S' February 16, 2006 - Hi Debra, The information on scored Coreg tablets came from a reader who claimed to be using them. I never had any problems cutting the regular football-shaped tabs in half. Did your cardiologist discuss trying you on amlodipine in addition to Toprol-XL to see if that took care of the problems? Just curious.
     People who have CHF from ischemia, such as causes heart attacks are most likely to benefit from most stem cell therapies, not people with DCM, viral or otherwise. Just remember that there are many "stem cell therapies" out there and they are very different from one another in most cases. Some of these therapies are working well on certain patients while others are being dropped as ineffective. I'd love to report on specifics but the trials are mostly still small, phase one and two, and not reporting results except in very general terms. Jon.

Norma W's February 16 reply to Tom S' February 16, 2006 - Hi, The first time the Veterans Administration sent prescription drugs to my husband, they included a pill splitter. Last year they mailed another one, which we thought was rather over-generous, but very handy to keep in a suitcase for when we travel.
     In response to Candace M, yes, some people do actually improve from CHF and cardiomyopathy. I was diagnosed in 1996 and for the first year, felt deathly ill. Gradually, I began to feel a little better, although my EF was still only 21% and has stayed that way. My prescription drugs have never changed, being digitalis, Cozaar and Aldactone (spironolactone) and I have outlived my first cardiologist (who didn't believe in "herbs and berries")! I spend quite a lot of money on alternative medicines such as Hawthorne, C0Q10, Ultra H-3, vitamin C, E and B12. I take a tranquilizer at night to help me sleep. I could not tolerate Coreg, which has caused a couple of cardiologists to disown me, but in the last three months, I feel so normal healthwise that I believe my next ultrasound will show I am making a terrific comeback! Keep smiling and keep positive. Norma W.

Susie M, February 16, 2006 - Hi, I have a question about my husband Kenny with CHF, whose last EF was 27%. For the past few months he had so many CHF symptoms like shortness of breath, weak voice, loss of appetite, extreme fatigue, abdominal swelling, and insomnia. The doctor increased his Demadex diuretic and increased his Monopril a month ago. Out of desperation, at the same time my husband decided he would try exercise for the first time. He is 62.
     We started walking at our mall and he could walk 30 minutes and now a month later we are at one hour. He just gets slightly winded occasionally as we walk. The cool thing is that since these 3 changes one month ago, he now sleeps through the night, has a better appetite, has no abdominal swelling, and just feels good about himself mentally because he can do it. He stills has his days of weakness and every day he rests most of the day, but wow, what a difference.
     Where he got the idea about the exercise was from this site, not anywhere else. Thank you, Jon! His doctors say he is between class 3 and 4 and I can understand why they would say that because according to this site and the descriptions of classes, they would be right, but now for a month he does not have all these symptoms and it seems more controlled. My question is, since he is feeling better from the med increase and exercise, was he really between 3 and 4? Thank you so much!
Jon's note: Class means functional class so it changes when ability to physically function changes. If he functions better physically, he has probably improved in heart class.

Curt H's February 16 reply to Bobby M's February 11, 2006 - Hi Bobby, I too worried about dying, then I was told this: "It is impossible to die until God says so."

Donna H, February 16, 2006 - Hello All, Recently my husband had his pacemaker/ICD checkup and mentioned to the cardiologist that he is having a lot of chest pain lately. The cardiologist looked at his chart and told him that since he doesn't have any blockages, the pain is probably indigestion and is not heart related. When the second cardiologist came in, he asked again about the chest pain and was told the same thing, that since he has no blockages the pain is not heart related.
     The same day we talked to the cardiologists he had bloodwork done and all was well except his blood was too thick. It seems that over the past 5 years his Coumadin has had to be consistently increased to keep his blood thin enough. Since we didn't know this until after the doctor's visit, we couldn't ask why this is happening. Has anyone else had to have their Coumadin increased consistantly?
     He was diagnosed with CHF in 2000 and has had a BiV pacemaker/ICD since December of 2005. He had a total ablation in July of 2005 and has been 100% pacemaker dependant since that time. During 2005 he also had his teeth pulled and lost 95 pounds in order to be placed on a transplant list. He is feeling much better with the BiV pacer and his EF has increased but he still tires easily and needs to sleep about 14 hours per day.
     We will be seeing his regular doctor next week and will ask her about the chest pain but I also would like some feedback from patients. Does anyone else have chest pain without blockages? What does your doctor say?
Jon's note: I used to and my cardiologists (two of them) said a small percentage of CHFers with zero blockages get angina. I took nitro just as if I did have blockages and it always stopped the chest pain.

Giorg's February 16 reply to K C's February 12, 2006 - Hi K C, I am 31 and I was diagnosed 5 years ago with familial dilated cardiomyopathy. After diagnosis I improved but, since my relatives with DCM sooner or later got to heart transplant, cardiologists think that sooner or later I am going to go downhill myself. So I understand your fears, and maybe I am more scared then you.
     It was a hard choice for me to decide to go living by myself. Actually my girlfriend helped me a lot, because she kind of moved with me. Just alone every single day would be too much for me. I suggest you to try to move gradually, as I did and I am still doing, and also with the help of another person.
     Anyway, do not let DCM keep you stuck in "stand by" all life long, that is a big risk. We are too young to just wait.

Sandy N's February 17 reply to Donna H's February 16, 2006 - Hi, I too have CHF, ICD/pacer and no blockages. I do get chest pain and what I call an elephant sitting on my chest. My doctor gave me nitro for it and it does work - just one, under my tongue and it's usually gone in a moment. In fact just last night I had to use one of the tiny pills.

Michelle A's February 17 reply to K C's February 12, 2006 - Hi, I'm 29 and I've had CHF for 13 years. I think where you choose to live depends on your abilities and resources. I've always lived in first floor apartments because stairs are a challenge. I am currently living with my parents as I wait to get on disability, and I will move out when I start getting checks. I'm in class 3 on my best day and right now my only concern is what will happen when I'm in end-stage CHF. Hopefully that won't be for a long time, but I'm planning for it now.
     I have great friends around me who have already offered their assistance for when I'm living on my own and permanently in class 4. I know I'll need them to shop for me, pick up meds, take me to the doc, clean,..., etc. I don't think I'll have too many problems filling out paperwork (bills, etc.) or caring for my cats, but they're willing to help me with those things if I need it. If I end up not being able to remain living alone, I have a friend who's agreed to care for me at her home when I'm dying.
     For me, the stress of living at home is much greater than the stress of living on my own, so getting out again is a top priority. I'm healthier and I feel better about myself when I live on my own. In the end, you have to do what's best for you, but don't let having heart problems stop you from doing what you want. Good luck!

Susie M, February 17, 2006 - Hi, Thank you Jon for your reply. So, if he is in stage 3, then he stays in stage 3 or can go to stage 4, but he can change which class he is in, 1, 2 , 3 or 4? Thanks.
Jon's note: I don't know how to phrase this differently than before. There is no stage 1, 2, 3 or 4. Stages are A, B, C, or D and have entirely different meanings than heart classes. Please carefully read this information in The Manual at and then ask again if it's still not clear.

Susie M, February 17, 2006 - Hi again, After I posted, I reread in The Manual about the classes and stages and the note after. So I think you answered my previous question. The Manual is such a great resource. I keep going back to it and every time I do, I learn more. Thank you again!

Roger G, February 17, 2006 - Hi All, I was just getting caught up on the posts since I have not been here in a while so forgive me for combining in one response and being brief. On the Coreg shortage, I just restocked last month with no problem. I order in 90 day size and just in case, I always have a full bottle in backup on all my meds, i.e., one opened and one in the supply locker. If something is not available, I still have 90 days on hand.
     On living alone, give it a whirl. How long do we live with CHF? Nine years and still going and going and going. On North Carolina Social Security Disability, my lawyer was able to apply for some type of an express hearing that was approved. I was not required to attend. The lawyer requested the judge make an immediate review and my SSD was approved.
     On digoxin and Coreg, I read about someone taking digoxin and Coreg. I also read that this is a no-no. Probably worth looking into if you are taking both. If your doctor is stupid or does not care, find a new doctor! On handicapped parking stickers, tell your doctor you do need one if you requested it. If you can't get to the groceries, there is a problem. It's one piece of paper they need to sign and you send in. Don't take no for an answer. Be a pest until it is easier for them to sign the paper than just say no! On using handicapped parking, on good days park a little further away and get the exercise. I only use mine on a bad day. I get mad when I see someone run out of the store to a handicapped spot. As far as new format for posts here, Jon, this is just fine. You do a great job. Thanks so much!

Norma L's February 18 reply to Donna H's February 16, 2006 - Hi, I also used to get chest pain a lot, not nearly as often now. My doctor also told me to take a nitro pill, up to 3 if needed, to ease pain. I have only 2 small blockages which are of no concern now. He also told me to take a nitro pill before I sing in the choir, or when I get real shortwinded! I haven't taken any for a long time, but we are singing Sunday evening and I will take one before we sing! He also put me on Protonix because sometimes chest pain can be indigestion! I only take it when I know it might be indigestion hurting me.

Norma L's February 18 reply to Candace M's February 14, 2006 - Hi Candace, Yes, I have greatly improved since I was diagnosed in June of 2003. Right now my doctor has cut my ACE Inhibitor in half and my Creator in half. Also, I take one Lasix one day and a half the next day! I still take 100mg Toprol-XL, but think my doctor might cut it in half also!
     I credit my improvement to walking every day, if possible, as much as 4 to 6 miles. I also went low carb to control my weight and in turn control my blood pressure and stress on my heart. I also have weekly Bible study in my home, and that helps a lot!

Natalie W's February 18 reply to Bobby M's February 11, 2006 - Hi, I was told I needed a pacemaker at the age of 35 with CHF on the right side of my heart. I eventually had an ICD implanted in 2000. After an episode of VT and being in intensive care for 4 days I was informed that I was going to need a heart transplant right away. That was 2 years ago. I have no intention of getting a heart transplant in the near future. I don't believe that doctors have all the answers. Every situation is different.
     I was terrified of dying and leaving my two children. My fear ruined my life. My advice is to learn everything you can about your CHF. Learn about medications and do not be afraid to confront your doctors with ideas for you own health care. Educate yourself on diet (low sodium), vitamins, etc. Do every thing you can to live now- not for what might happen.

Natalie W, February 18, 2006 - Hello, I just wanted to point out that at you can buy a lot of low sodium and no salt products. Diuretics are taking a toll on my kidney function and my cardiologist at Stanford suggested sticking to 500mg of sodium intake a day. I thought it would be impossible but with the right products and cooking from scratch it can be done. It has made a huge difference in the retention of water. clanwilson@earthlink net

Mike T, February 18, 2006 - Hi Jon, My ICD shocked me 43 times 20 before I got to the emergency room. Then it quit and they used the paddles on me 3 times. It was a shocking experience but I'm still alive. Have you heard of anyone being zapped that many times?
Jon's note: I'm not sure about 43 times but I do know of people who have been shocked over 20 times consecutively due to programming flaws usually. Your device must have a very good battery!

Gayle A's February 18 reply to Barb N's February 16, 2006 - Dear Barb, I had to laugh when you said, "wear the stupid thing 6 to 8 hours every night." My husband has CHF (I've read this forum for a couple of years, but I rarely post) and has been diagnosed with sleep apnea (actually diagnosed before he developed heart failure, but I think, on retrospect, he was in the early stages). Anyway, he is a mouth breather. His nasal passages are too small even after two surgeries, to be able to breathe through his nose at night. So, he has to wear a full face mask.
     He has a horrible time sleeping without the "stupid thing." During his last sleep study (in January), they noted that he was desaturating, his mean oxygen blood levels were below 90, so he now is supposed to use oxygen as well as his CPAP. He also has asthma and when his machine ramps up to his level (which is currently only at 10) and he wakes up, he cannot wear the mask because he feels like he is suffocating and so he just takes it off. I know he could start it over, so that it would be ramping while he goes back to sleep but he is just so disgusted with it, I don't think he is going to be able to use it.
     He has to take a sleeping pill to be able to use it only a couple of hours per night. He can wear his oxygen however, by nasal canula. I'm pretty worred about him but I just don't know what else to do.
Jon's note: His need is serious enough that you should talk directly to various CPAP equipment manufacturers about possible solutions.

Roger H, February 18, 2006 - Hello, I posted around the first of February about coming close to passing out. I got the Cozaar cut in half to 25mg twice a day and haven't had any more problems. I got some blood work done and a carotid echo and all that was okay. I got a steress test this week and did good on that. I fell only 5 seconds short of the 11 minutes that it usually runs. The doc also did an echo before and after. He said I have 30 to 35% EF. Thanks for the wonderful site!

Tom S' February 20 reply to Roger G's February 17, 2006 - Welcome home Roger, I am the one with the an idiot for a doctor. He prescribed digoxin 0.25mg once a day on top of my doses of Coreg at 12.5mg twice a day. I wasn't aware there was a contraindication for the two. Also I took the combo years ago until I developed a digoxin cough at which time I just stopped taking it but continued taking Coreg at 50mg daily.

Jon's February 20 reply to Tom S' February 20, 2006 - Hi Tom and everyone, This is about Coreg and digoxin. It is okay to take both - but your blood digoxin levels must be tracked very closely so your digoxin dose can be adjusted to keep your digoxin level proper. Don't forget that if you take digoxin at all, your doctor should be ordering regular blood tests to check your "dig" level anyway!
     Usually if you're taking digoxin and start Coreg, your digoxin dose is immediately reduced until blood tests can be done at proper intervals. If you take Coreg and start digoxin (which I did long ago), you simply start digoxin at a very low dose and work your way up to what keeps your blood levels proper. Jon.

K C's February 20 reply to Natalie W's February 18, 2006 - Hi, You're on 500mg sodium or less per day? I guess I'm not so bad on 2000mg a day averaging 500mg each meal. I wish you all the best with cooking. You would need creative thinking for variety with that kind of limit. Best wishes.

Brooke H, February 20, 2006 - Hello, I'm 30 years old female. I had a baby 5 months ago and was diagnosed with CHF and peripartum cardiomyopothy a little over month ago. I went into the emergency clinic with shortness of breath, a wheezing in my breathing and a tightness in my chest. I also couldn't lie flat or sleep. They did a chest x-ray to see if I had fluid on my lungs. I did and my heart was enlarged.
     Because of birth control and a recent trip overseas they thought it could be a blood clot and rushed me to the nearest hospital via ambulance. There they did a blood work up and my BNP was 1300. They admitted me immediately because of CHF. The next morning was an arrangement of tests, including an echo. This showed my EF at 15%. I am in great shape and work out all the time. All symptoms came on in a matter of days. The docs put me at a class 4 and Stage C. I also had a cath and things all looked good from the inside.
     I'm now on Coumadin at 7.5mg Monday, Wednesday and Friday and 5mg the other days; Lasix at 40mg twice a day; digoxin at 0.125mg; 25mg Aldactone (spironolactone); potassium at 10 mEq; and Coreg at 6.25mg twice a day. I go to cardiac rehab 3 days a week and see my doc every 7 days.
     Does anyone have any advice on how to deal with all this? I'm an otherwise healhty 30 year old with a baby and am now looking at mortality rates.

Martha G, February 20, 2006 - Hello, How do you know if you are taking too much Coreg, what are the side effects? Thank you.

Hannah K, February 20, 2006 - Hi, I have microvascular heart disease which creates symptoms of chest pain, fast heart rate and fatigue. I've had a cath which showed an EF of 50% but high diastolic pressure. Has anyone been diagnosed with diastolic failure versus systolic? The right side of my heart is mildly enlarged and dysfunctional.
     My cardio just started me on Toprol-XL. I also take lisinopril, Inspra, Pravachol and Foltx. He forgot to tell me that the beta-blocker interferes with strenuous exercise. I took a pretty tough yoga class on Saturday and felt like I had the flu afterwards. I had to lie down for two hours. Has anyone ever experienced such a thing? Thanks, Hannah K.

Bill R, February 20, 2006 - Hello, I am very new to Internet forums. I had open heart surgery (5 arteries bypassed) in March of 2005. I was diagnosed with CHF in November of 2005 and had an ICD/pacer put in. My EF was 25% in December. I was just rechecked this month (February) and my EF has gone to 30%. Everyone (including my cardiologist) assured me I would feel so much better by now (with the new pacer), but I feel worse. All the pacemaker checkups say the pacer is working as expected, so why do I still feel so tired and weak? The nurse says it takes time. How much time?
     They have increased my metoprolol to 100mg twice a day and my enalapril to 20mg twice a day. My legs ache all the time which I suspect is from the metoprolol. I am very depressed and am taking meds for that too. Other meds I am on include Darvocet for arthritis pain 100/650mg three times a day, Xanax one mg as needed for anxiety, for depression 40mg Prozac in the morning and 10mg in the evening; and 150mg Trazadone at night to help me sleep. For fluid retention I take 40mg Lasix every morning along with K-Tab (10 mEq) for potassium loss from the Lasix. I have been on Coumidan for 9 years and have my levels checked monthly. I am also on Lanoxin at 0.375mg daily. I also take 60mg CoQ10 daily and multivitamins and minerals. Thanks for any help you can give me. Bill R.

Patrick, February 21, 2006 - Howdy All, Since the new Medicare Rx program has been shoved down my throat I have been on a search for the cheapest Coreg I can find. In Tijuana, Mexico I was quoted 30 pills (25mg) for $18 which is 60¢ each or $60 per 100 pills. Tonight I found a Canadian pharmacy ( that has 100 tabs (any milligram dosage) for $95. This is about half the cost I now pay at Wal-mart. Has anybody found them cheaper anywhere?
     Also, I found and bought 40 mg tabs of benazepril (generic Lotensin) for $66.43 including shipping and that was for 200 tabs here in the States (Florida) at, phone number 1-800-881-6325. I'm still looking for cheap inhalers Aerobid and Atrovent so if anybody knows where I can get them at a good price I'd appreciate knowing. Also I use Zocor and buy 80mg tabs and cut them into 4 pieces (20 mg each).
     With the onset of the new Rx program we all may want to share or sources for our Rxs in order to save what we can. God bless, Patrick.

Bill D, February 21, 2006 - Hello fellow CHFers, My post involves the EECP procedure and CHF. As most of you probably already know, EECP "possibly" helps those suffering from CHF. I started the 35 day routine 20 days ago. The first thing that happened was PVCs showing up about every 6th beat. The doctor changed me from Coreg to Toprol-XL but it didn't help. He then put me on amiodarone (Cordarone) to control the arrhythmia. Some days it helps and the procedure goes fine (kerchunka, kerchunka) but other days I still have weird arrhythmia like PVCs and skipped beats. I am tempted to go back to Coreg and stop the amiodarone, which is causing side effects like worsening of shortness of breath. Any thoughts or ideas? Thanks.
Jon's note: Amiodarone is a potentially lethal drug, so unless you have a potentially dangerous arrhythmia, I would get off it as soon as possible. It should not be prescribed for PVCs so make sure what your arrhythmia really is.

Donna H's February 21 reply to Gayle A's February 18, 2006 - Hi, When my husband was put on a CPAP machine 6 years ago, he had a rough time sleeping with it until we found a comfortable mask. Now he won't even nap without it. Personally, I don't know how he stands it as the pressure is now up around 14 but he says that as long as the mask is comfortable he sleeps better with it than without it. Also, his latest machine has a humidifer built in and that has also helped with throat dryness.
     I have talked to some people that prefer the nose canulas but my husband feels like the mask is best. His latest mask has a plastic headpiece that rests on the bridge of his nose as well as a small vent that can be turned so the air coming out goes in a different direction. The part against his face has a soft plastic that he says is very comfortable.

Wadine T's February 21 reply to Candace M's February 14, 2006 - Hi Candace, It's strange that you ask if anyone here has improved. I must admit that I have not been here in well over a year because I was too busy - changing jobs, my residence, and just getting on with life. Getting on with life does not mean that I am living without fear.
     In 2002 I was diagnosed with cardiomyopathy. My ejection fraction was 16% and I was devastated reading the reports. A year later I was diagnosed with diabetes. I am on 28 ml of humolog and 22 ml of lantus. Also, I take 50mg Coreg, 100mg Cozaar, 40mg Lasix, and 10mg of Crestor. In addition to all that, I take 250mg of imipramine for depression. I have been on imipramine since 1978.
     My cardiologist ordered an echocardiogram and I finally showed up saying that I had been busy, which I had. For some strange reason I was very relaxed during the exam and for the first time saw my heart beating and saying, "wow!" as the technician showed me the chambers. I listened to my heart beating and was filled with wonder. After the test, my doctor walked in saying, "Well, I'll be darned!" I asked what was wrong and he said that my ejection fraction is nearly 60%. I told him that he was lying and he said that he was not. My doctor says that my life has changed with that EF. In 2004, my QRS had also changed significantly, improving from 160ms to 130 and then to 106. I had hoped for improvement but was more focused on getting as much work done as possible. Also, you would not believe the stress in my life.
     Candace, I don't know what the morrow brings and I certainly didn't know this much of an improvement was going to happen. My advice is to take your medicine, do some of what your doctor says, and do all you can to make the lives of others pleasant. Good luck. Wadine.
Jon's note: Many of us do get better. I was diagnosed in 1994 with an EF of 13% and Vo2max of 13.5. I now have an EF of 55% and Vo2max of 30. Am I well? No. Am I better? Hugely. Learn everything, ride your doctor hard, and make every change needed to improve - your chances get better with every step this way.

Maggie R's February 21 reply to Patrick's February 21, 2006 - Hi Patrick, I am puzzled by your description of the "new Medicare Rx" program. Being on Medicare with the new program has cut my monthly bill of meds from $300 to less than $100, including the premium for the insurance. Benazepril (and all generics) cost me $5 for a month's supply and Coreg (and other "preferred" drugs, like Lipitor) is $28 for a month - more like two months, as I cut them in half. The price is the same no matter where I get the scripts filled. My AARP premium is $27 a month. Texas can't be that much different than Florida.

Gayle A's February 21 reply to Bill R's February 20, 2006 - Hi Bill, I'm sorry to hear that you are not feeling well. Unfortunately, with CHF I think that is sometimes the way of life, at least from time to time. My husband has many of the same symptoms, felt worse after his pacer implant with weak legs and couldn't walk more than a half block; his legs would just not carry him and he was tired all the time.
     After much testing and a couple of hospital stays, we have discovered that he is a dry CHFer - I know, it is very wierd - but when they took him off his diuretics, off dig, reduced his Coreg and let him have some sodium in his diet - he is doing much better. His CHF symptoms are exacerbated by a rise in his blood pressure so we keep a very close eye on it now, and are allowed to adjust his Coreg based on his blood pressure readings and how he is feeling.
     I'm not suggesting to you that this is your problem. However, I am suggesting that sometimes it takes a diligent doctor to find out exactly what is going on and to find the best treatment regimen. In heart failure, it is not one-size-fits-all.
Jon's note: A very true statement. What works for you is what works for you. That's why you have to be on the ball as well as having a doctor on the ball.

Jon, February 24, 2006 - Hi everybody, The delay in posts was due to a technical difficulty - my body trying to disintegrate on me. <g> I have picked a PCP here but he hasn't had time to digest my situation and get tests done yet. I'm not really too much better but will try to get some of these backlogged posts up. I'll get started catching up Sunday if at all possible.
     By the way, I will be giving a presentation in a couple of months at a medical conference on the ethics of heart failure treatment. My presentation is "A patient's perspective." If you would like a roomful of practicing heart failure cardiologists to hear something in particular, please e-mail your suggestion to I will not be replying to these messages and I will destroy the e-mail address when it is time to finish writing my presentation. If there is something about how doctors treat/diagnose/manage heart failure patients that you would like to comment on or see changed, this is your golden opportunity, as I am personally writing and presenting the talk. Jon.

Bill D, February 24, 2006 - Hi Jon, Thanks for the heads up on Amiodarone. I had been doing research on the drug and was a little worried during the loading dose and started seeing the adverse reaction symptoms. I discontinued it yesterday and went back to my old drug regimen. My EECP treatments will end next Monday and I do another stress test.

Debra S, February 26, 2006 - Hello, I already wrote this but may have erased it by mistake. Does anyone know of a good heart hospital in London, Ontario, or the surrounding area? Thank you.

Brooke H, February 26, 2006 - Hi, My docs increased my Coreg to 12.5mg 2 times a day and I feel great! I mean bounds of energy. Any ideas?

Hannah K, February 26, 2006 - Hi, My primary care doctor did some research and found that the Toprol-XL I was taking combined with the Inspra (which I've been on for over a year) caused mild hyperkalemia. He said the binding agent in the beta-blocker promoted an increase in potassium in my blood! I was profoundly ill by the fourth day on the beta-blocker but neither my cardio nor my primary thought it was due to the new medication. They both thought it was the flu, and that I should wait it out! I hate to think where I would be if I had followed their advice! Be careful, trust your instincts! Hannah K.
Jon's note: Potassium levels are altered by many CHF drugs. The new treatment guidelines even give specific warnings on which meds to watch for this when adding. Inspra is listed as one so it shouldn't have been a surprise to the docs.

James N, February 26, 2006 - Hello, I will soon be entering a fasting state. I'm curious how some others on Coreg handle fasting. Do you eat something with the Coreg instead, take it with only water, or,...,? Of course, I'm discussing this with my doctor as well.

Ian L, February 26, 2006 - Hi all, Can someone shed any light on the subject of fluid retention? I live in the UK and have DCM plus an ICD fitted for tachcycardia. I had a virus over January and lost weight and have been told by the hospital to weigh myself daily and take furosemide if my weight starts rising (I don't seem to need it regularly).
     My question is that sometimes my ankles are a bit puffy in the evening but with no change in weight. I don't wheeze or cough at night or swell anywhere else. The hospital say it might be for reasons other than fluid retention but I don't know what to do when it happens. My urine is quite dark and if anything I feel like drinking more than I do. Any thoughts anyone?
Jon's note: Gravity - from standing or sitting all day. After lying down all night, is the puffiness gone?

Ron L, February 26, 2006 - Hello, Mylan Laboratories Inc. said Thursday the U.S. Food and Drug Administration has granted tentative approval for carvedilol, a generic version of GlaxoSmithKine's Coreg, a drug used in the treatment of high blood pressure.

James N's February 26 reply to Candace's February 14, 2006 - Hi Candace, Yes, many CHFers do get better. Are they cured? Well, that's arguable but I'd say no, not really. I was first diagnosed back in 2002. When I received my diagnosis, I was devastated. Over the course of the following year, my health declined and my professional life fell to ruins. My CHF did not respond to the meds at all. We finally ended up with a last option of a new type of pacer called a BiVentricular pacer (not so new now I suppose). After that, I was headed for the transplant list.
     I'm pleased to say that the BiV pacer did the trick. Today my heart's EF and size are very close to normal. At one time, I couldn't walk 30 feet without resting but today I do just about everything I did before the diagnosis. I have a 2 year old little boy and a 4 year old little girl to keep me busy. I let my wife bring home the bacon. :-)
     I still suffer the good day/bad day bit, and the simple fact is that I always have that nagging concern of it all coming to an end. I don't worry about it though - ya just can't. I live life to its fullest, help others where I can, and we'll see where things take me. I turn 37 in about a month as well and I have a lot of living left to do. You can read my bio here on Jon's site. I used to post under

Jacky B's February 26 reply to Maggie R's February 21, 2006 - Hi, I agree Maggie, my prescription costs, including the monthly fees have improved with the plan!

Kathy Z, February 26, 2006 - Hello, I just found this message board. I had a heart attack in May of 2003 and had 2 stents placed. In July I went into CHF because the doctor missed a blockage and I had another stent placed. So much for the past.
     I read some of the post. I also take Lasix and have problems with leg cramps at night. I have found a way to help. When you first feel the cramp coming on, pinch your bottom lip as hard as you can stand. It stops the cramp immediately. I don't know why but it works every time. Good luck, Kathy.
Jon's note: I'd suggest getting your blood potassium levels measured as soon as possible instead.

Courtney L, February 26, 2006 - Hi, I found out last October that I have CHF and am wondering if anybody would like to be pen pals so that we can support one another. Contact me if interested. I'm lost and need a friend. Thanks.

Lowell P, February 27, 2006 - Dear Jon, I had a lab test this month that showed an increase in BNP from about 700 in December to 1350 in January and this time it was 6590. My doctor is puzzled as he says my lungs sound good with no swelling in my legs and I feel very well. I recently changed from Coreg to Toprol-XL and reduced my Lasix to every other day but that's the only change. My weight has not changed and as I said, I feel very well. My creatinine is 1.5 and bun 53. Any thoughts on this, Jon? Thks in advance. Lowell.

Jon's February 27 reply to Lowell P's February 27, 2006 - Hi Lowell, Without obvious (clinical) symptoms, I'd consider heart size and pressure as possible reasons for the increased BNP. I look back and pretty much repeat most of what I said in my post at Have you had any testing done regarding whether your heart's chambers are beating as a team or not? The lower heart chambers can't work properly if the upper chambers don't behave. Jon.

Jane A, February 27, 2006 - Hi Jon, I want to tell you about my experience with the Vo2max test. It was on a bicycle instead of a treadmill. This was good because I lose my balance when I become tired and I had been afraid of tipping over during the test. The techs attached the monitors and then I got on the bike. They put in the mouthpiece and made sure it was comfortable and that I was okay with it. It's weight tipped it downward so they put a piece of foam between it and my chin. My jaw didn't get tired or hurt. When they were sure I was comfortable, they attached the noseclip, which didn't hurt nearly as much as I had expected it to. There was a gauge on the bicycle and they told me to try to keep the arrow within a certain range as the test progressed. This was nicer than a treadmill because I felt I was more in charge of the speed, rather than having a treadmill set at a certain speed and me trying to keep up with it. They assured me that I could stop the test at any time, but they had a goal they would like me to reach. Again, this put the control into my hands and I was more willing to try each new level. In reality, I wasn't nearly as exhausted at the end of it as I had thought I would be. My blood pressure returned to normal much faster than I had anticipated. I think I expended more energy worrying about the test than I used during the test.
     Your site has been alot of help to me, but this was one case where my experience was vastly different than yours.

Jon's February 27 reply to Jane A's February 27, 2006 - Hi Jane, You're absolutely right that equipment and experiences will vary from one setup to the next. Some mouthpieces now also have head straps so they don't fatigue the jaw. However, as I understand it - and the differences get pretty technical - when you can stop the test for anything less than absolute inability to continue, it's not a Vo2max test, it's a "peak exercise test" or "peak Vo2 test" which is not actually a Vo2max (mVo2) test. That is my understanding. The peak tests don't have as much predictive value for prognosis as a Vo2max test. A lot of medical personnel lump them under the same title (many doctors don't even understand the value of a Vo2max test or what it actually does), but they are not quite the same thing.
     Bicycle tests give a consistently different Vo2 result in general than a treadmill test so a bicycle result should not be directly compared to a treadmill test result. I think I've had 5 treadmill Vo2max tests and one bicycle test, using 4 different testing setups, some much better than others. The common point was insistence that I go at the required pace until they got their results unless I actually could not continue. At my last one, they had started having 3 people in the room, requiring an actual cardiologist in the room for the whole test.
     I think the test was originally designed for assessing people with lung problems, not heart problems. A Vo2max test does have strong predictive value in CHF and for many stable CHFers, is a good idea. I don't like them but I consider them useful enough to have agreed to have 5 of them. ;-) Jon.

Peter S' February 27 reply to Martha G's February 20, 2006 - Hi Martha, Your question about how does one know if one is taking too much Coreg and what are the side effects is a good one and quite natural if you are new to Coreg or Jon's web site. But the answer is not that simple and to really get feedback that is helpful to you, you must (in my opinion) give more background. What is your dosage, how long have you been taking it, what did your doctor say, what specifically is your heart problem? Also did you check the CHF Patients Web site index? There is a ton of information there on Coreg that Jon has put together over the years. After reading up on Coreg you may still have questions, but they will be more focused. I don't mean to pick on you - just to help you find the best way to acquire information.

Stephanie P, February 27, 2006 - Hello everyone, The information I have learned on this site has been greatly appreciated. Jon, I honestly wish the donation I've made could be more. You will be blessed for all of your many hours of hard work! Now, on with my background and question:
     I was diagnosed with peripartum cardiomyopathy a year and a half ago following the birth of my daughter. I have a wonderful cardiologist who manages my heart with great skill. My only complaint is that I don't feel he fully understands my struggle with extreme fatigue. I am now only on Coreg 25mg twice a day, and Altace 5mg once a day. I do have digoxin and Lasix that I use only when needed. I am tolerating the Coreg well, much to the surprise of my doctor. I am 37 and weigh 100 lbs. He thought the target dose might be too much for me, since my weight has dropped considerably after my diagnosis, but all has been fine except for the fatigue. My EF rises and falls, but it has gone from 13 to the 40s (which I am very happy to say - 13% was not fun at all!) He wants to put me on a daily anti-depression med but I am not having any problems with depression. My worst bouts with fatigue occur around two times a week, sometimes more, sometimes less. It depends on my amount/quality of sleep and what life throws my way.
     I would like to know if there is an "as needed" med someone could suggest that I could take only when the fatigue is just to the point of being unbearable. I really don't want to take another daily med if possible, and I don't want to feel like a zombie either. I've got a cutie pie girl with fast little feet to keep up with! She's my daily exercise! I thank you all for your time, and here's to health and happiness all around!

Jon's February 27 reply to Stephanie P's February 27, 2006 - Hi Stephanie, Due to blood digoxin levels needing monitoring to keep them steady in a certain range, digoxin should never be given "as needed." It should be taken on a regular schedule with regular blood testing or not at all - especially when you also take Coreg, which raises blood digoxin levels!
     Have you had your thyroid function tested? What is your average blood pressure? Do you ever get lightheaded when standing up from a seated position? I wonder if your Coreg dose is in reality too high. The therapeutic dose is considered to be 12.5mg twice a day and your blood pressure may be low, triggering extreme fatigue, which can come and go. Also, diuretics can cause very serious fatigue if your blood volume gets low, so I would avoid the Lasix unless a significant rise in your morning weight dictates taking a dose.
     When CHFers see improvement in heart function, doctors seem oblivious to the fact that we can still have serious symptoms much of the time. It's one of the topics I plan to beat them over the head with at the upcoming medical conference at which I'll be speaking (don't forget to send my your ideas on topics to present to them at the e-mail adress
     Discuss this with your doctor and make sure your kidney and liver function are also tested. Fatigue can come from many sources - keep looking until you find the actual source so it can be corrected. It will pay off for you and for your daughter. Jon.

Lowell P, February 27, 2006 - Hi Jon, I wrote to you earlier about the increase in my BNP to 6600 from under 700. My doctor called and said that he had consulted with two other cardiologists and they both feel the test results are in error. I hope so! Lowell.
Jon's note: There's only one way to find out and that's a re-test.

Anna Miller, February 27, 2006 - Hi, I am thrilled to have found this web site. My husband was diagnosed a few years ago with CHF. He received an ICD last September which has yet to go off. His cardiologist actually sounded surprised. He is presently on furosemide, Toprol-XL, Monopril, magnesium, and potassium. His doctor informed us about four weeks ago that he was at the end and would make it another year at best. I was floored and am still struggling with this prognosis. He is 46.
     However, he recently started Primacor and I am worried, after reading information on this site, about the merits of continuing the infusions. He does feel better but am concerned if this is in his best interest due to the possiblity of shortening his life. Please advise. He is presently going two times a week.

Jon's February 27 reply to Anna Miller's February 27, 2006 - Hi Anna, Without a lot more information, it's not possible to say much. My personal opinion is that anytime you get a statement about being end-stage, it's time for a second opinion from a heart failure specialist not affiliated with the current one if possible. If indeed, your husband's treatment is as good as it can get, then it becomes a quality-of-life versus length-of-life issue, something he has to decide for himself and enforce his own decisions. Jon.

John K's February 27 reply to James N's February 26, 2006 - Hello James, I never take my Coreg with food, I take 50mg twice a day with milk or water and have not had a problem with it. Good luck.

Ben B, February 27, 2006 - Hello, I do not post here regularly anymore, but do read daily. Those of you newbies have come to the right place, you will not find a better site for heart failure. I did want to tell a little of my story to encourage fearful people, because I was where you are a few years ago.
     In 1997 I was working overseas in Taiwan, and I developed a horrible cough. I couldn't sleep lying down and couldn't climb the six flights of stairs necessary to get to my work site. On my return to the USA I had myself checked out and an alert doctor saw my enlarged heart, told me I had heart failure, gave me some Zestril and sent me to a cardiologist. After echos and a cath it was discovered I had DCM with an EF of 10 to 15%. I also had a lot of PVCs and during the cath I had a triplet so my doc sent me for an EPS. They couldn't induce anything and said I didn't need an ICD. My doc told me to get ready for permanent disability because I would never work again. I was scared and sad. My fiancee at the time dumped me. I remember choking back tears when I told the person at the insurance company what my doc had told me.
     Skip forward to 2002. I had another cath which showed my EF up to 45 to 50% and normal heart size. More importantly, I felt pretty darn good. The same doc who had told me I could not work now would not sign the disability forms. I was mad, but luckily I was able to get a job I can handle. I've been working full time now for 3 years. In the meantime, I got a Master's degree and passed a professional engineering exam. I got married in 2004.
     I attribute all of this to God, Coreg, and Zestril, because I am not the most compliant patient. I am overweight, but have started working on it. I also have a couple of 40% plaque lesions in my heart, but my cholesterol is 150 and I am exercising. Hopefully, I can stave off added ischemic heart problems for a while. I am also still a little worried about my arrhythmias and that it will all come tumbling down, but I've had 9 pretty good years so far.
     I know there are people who don't get better and die, there are also people who don't really get better and live for a long time, as well as people that get better numbers but never feel much better. I just wanted to say that some people do get better and feel better as well, at least for awhile.

Scott Brown's February 28 reply to Kathy Z's February 26, 2006 - Hi Kathy, The cramps in the legs (and other places), twitches (such as the eyes) are usually due to potassium. When you take diuretics, you should take Slow-K to restore your potassium levels. While Slow-K is convenient, it can also be hard on your stomach. Take only as much as you require, and I suggest eating something with it. I would suggest you stop biting your lip. I can think of no scientific reason for this helping (other than taking your mind off the cramping). I hope this helps. Scott B.

Scott Brown's February 28 reply to Ian L's February 26, 2006 - Hi Ian, You are highlighting the main problem with weighing yourself to determine the amount of diuretic to take. If you are losing/gaining weight for reasons other than fluid retention, it is possible to lose weight but be retaining fluid. It is normal for a person on Lasix to be thirsty frequently. The strategy is to live just across the border from mild dehydration so you do not experience the side effects of full or over-hydration.
     The reason it is key to weigh yourself regularly is to find a new normal or baseline level. For example, if you normally weigh 160 lbs, then lose 5 pounds due to a diet, the new baseline will become 155. If you weigh 157, you may need to take Lasix to get down to your new target weight of 155. Even though your weight is down from normal, it is over the new normal.
     I wonder if you do not experience the other symptoms because you stick to a low sodium diet. Regardless, consider yourself fortunate. Thanks, Scott B.

Ben B, February 28, 2006 - Hi everyone, After thinking about my earlier post, I want to stress I am not trying to brag about anything. I have just been lucky enough to now be able to do a few normal things since basically being written off for dead. I am very lucky because by all accounts I am not a perfect patient and do not have the self discipline of a lot of people around here. I know there are people around here that are perfectly compliant and just don't get better.
     I wanted to give some people hope that things can possibly get better. I hope I did not make anyone who is struggling feel worse, because I know this could happen to me at any time.

Sandy N's February 28 reply to Kathy Z's February 26, 2006 - Hi Kathy, As Jon said, you need potassium and the cramps will go away. Your doctor should have prescribed them, along with Lasix. "Pinch my lip" - don't think so! Good luck to you!

Debra S, February 28, 2006 - Hi all, I keep forgetting to ask, does anyone know what has happened to Tony Myrick?

James N, February 28, 2006 - Hello, Has anyone gone off Coreg permanently? Also, does anyone have any studies to cite of those who are taken off Coreg (not other beta-blockers but specifically Coreg)?

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, 2005, 2006 Jon C.

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