The paperwork never ends The Archives
March 16-31, 2007 Archive Index CHFpatients.com

Jon 3-19     delay due to trip, update
 
David W's 3-19 reply to Giorg's 3-14     allopurinol dose, other options for gout
 
David E's 3-19 reply to Jon's 3-14     BNP results and a question
 
Sandy N's 3-19 reply to Kathy H's 3-14     heart failure doctors in Florida
 
Marcia H 3-19     are they missing something?
 
Kathy K 3-19     seek experiences with raising Coreg dose
 
Peter S 3-19     allopurinol and uric acid testing
 
James N 3-19     my implanted device scared me!
 
Nancy S' 3-19 reply to Carol's 3-12     exercising with disabilities
 
Linda K's 3-20 reply to Marcia H's 3-19     maybe they are missing something
 
Tom S' 3-20 reply to Marcia H's 3-19     maybe they are missing something
 
Jonette O 3-20     HCM, sweating question
 
Carol H's 3-20 reply to Nancy S' 3-19     specific Coreg problem - anyone else?
 
Melanie M's 3-20 reply to David E's 3-14     I see the same doctor
 
Ann L's 3-20 reply to Kathy K's 3-19     experience raising Coreg dose
 
William J's 3-20 reply to Kathy K's 3-19     experience raising Coreg dose
 
Nancy S 3-20     questions about MRI-safe pacemakers
 
Nancy S' 3-20 reply to James N's 3-19     pacemaker experience, please share
 
Kathy K's 3-23 reply to Ann L's 3-20     experiences raising Coreg dose
 
Linda K's 3-23 reply to Jon's 3-20     chemo and CHF, and more
 
Stephanie L 3-23     seek experiences with familial dilated cardiomyopathy
 
Tom S 3-23     tweaking BiV pacer helped
 
Carol H 3-23     seek info on chemotherapy and heart failure
 
Scott B's 3-23 reply to Carol H's 3-20     Coreg experience
 
Sharon S 3-23     how large is a BiV pacer with ICD?
 
Patricia P 3-23     what does this stress test report mean?
 
Tony M 3-23     should I get another doctor's opinion? and more
 
Tom S' 3-26 reply to Sharon S' 3-23     BiV pacer/ICD size
 
Debra S' 3-26 reply to Sharon S' 3-23     BiV pacer/ICD size
 
James C 3-26     does anyone else take Coreg CR?
 
Valerie R 3-26     audible pacemaker alert
 
Scott B's 3-26 reply to Tony M's 3-23     getting a device or not and more
 
Jon 3-26     good old insomnia
 
Debra S' 3-27 reply to James C's 3-26     experience with Coreg CR
 
Kathy K's 3-27 reply to James C's 3-26     what is Coreg CR?
 
Mari S' 3-27 reply to James C's 3-26     some questions about Coreg CR
 
Jacky B's 3-27 reply to Jon's 3-26     that's a tough one
 
Maya S 3-27     seek pacemaker experiences for school
 
Jon 3-31     sorry for the lapse
 
Debra S 3-31     Coreg CR availability
 
Lowell P 3-31     heart sizes and exercise
 
Jon's 4-1 reply to Lowell P's 3-31     heart sizes and exercise
 

Jon, March 19, 2007 - Hi everyone, I had to make a quick 3-day trip back to Kansas City for family reasons. I apologize for the delay but these things happen. On the personal treatment front, my methatrexate dose goes up this week and I soon begin home Enbrel injections for my rheumatoid arthritis, so here's hoping. Jon.


David W's March 19 reply to Giorg's March 14, 2007 - Hi, I take 300 mg allopurinol for my gout. I can't tell that is hurts me and it does seem to keep gout attacks down. Something else kind of strange that can help gout is to eat cherries and strawberries or drink cherry juice. Something in the cherries really helps. I munch on dried cherries sometimes or drink or eat cherries and it can head off a gout attack when you feel one coming on. Strawberries is not as good as cherries but I think they help too. wilsond537@aol.com


David E's March 14 reply to Jon's March 14, 2007 - Hi Jon, I called the cardiologist who did the BNP test and this is what they said: My result was listed as 55 H - they said the 55 is measured in pg/ml. The H is an abbreviation for High, or elevated. They said that a normal number is 31. They also said that it could be my restrictive lung disease that has elevated it.
     I guess my question is, since I've looked at the charts on your site and am still fuzzy as to if my result is truly bad or not, because the numbers for people with CHF the BNP numbers are very high. It's either that or I'm just not reading the charts correctly, which could very well be.
     Thank you again Jon for this incredible site, and just that simple nudge to ask my doctor questions and not just let things sit has been incredibly helpful. You are a great man doing a great service. David. skippi4@hotmail.com
 
Jon's note: Hi David, I'm as confused as are you. Your number of 55 for BNP is quite good and should not register as elevated by anyone's standards! I could quote reams of data which all say this is not an elevated reading so if it were me, I'd be calling my doc again and making them explain why they use different standards for you than for everyone else in the world.


Sandy N's March 19 repl to Kathy H's March 14, 2007 - Hi Kathy, I live in Clearwater and go to a very well known CHF specialist. This man literally saved my life. There are 17 doctors in his office alone and they have many different offices around Florida. Contact a doctor from the following site. I'm sure they will put you in touch with one close to you: www.havi-north.com/. Here is the site for Sarasota: www.smh.com/sections/hv_institute/index.html. Good luck. Sandy. bleuskiiisgrl@yahoo.com


Marcia H, March 19, 2007 - Hi, I am long-term heart, diabetes, lung, obese, etc. Iad a stress test, EKG and echo recently and was told everything looked good with my heart. I continue to have PVCs, bigeminy, and bradycardia. I also have a feeling that feels like I must have very low bloood sugar (but it's not low) that shaky, nervous feeling. Do you think they are missing something? mhilley@kpunet.net


Kathy K, March 19, 2007 - Hello, I've just found this web site today and it seems full of good information. I'm a 53 year old CHF patient. This started 10 years ago for me with a mitral valve in need of replacement. My heart function deteriorated after that and was it agreed that I'm living with the aftereffects of radiation and chemo received at age 30 for Hodgkin's. I've been doing great for 10 years on 12.5mg BID of Coreg. I have had a few episodes of a-fib and more recently was started on amiodarone and they are trying to up my dose of Coreg to 25mg BID. My Coreg is increased slowly with increases every two weeks. Right now I'm up to a total of 43mg per day. I am still having problems with edema (mostly ascites). My doctor reduced my Lasik to 20mg per day because of some decline in kidney function.
     I am interested in asking some questions of anyone with similar experiences. Particularly of interest are those who have raised their Coreg dosage. How long does it take to adjust? Do most people feel okay after two weeks? I've been increasing my dosage by 6.25 per day every two weeks. I wonder if I should stop where I am or continue the increase?
     I've had a slow weight gain during the time I've been working to increase my dose, but I definitely feel the fluid and the lack of endurance. I would say I'm somewhere between class 2 and class 3. My last EF was 43%. Anyway, sorry this is long, but would like to share or learn from other's experiences. Thanks. mkk@pinelink.org


Peter S, March 19, 2007 - Hi all, Tto weigh in on the allopurinol (gout drug) discussion initiated by Giorg's March 8th post, I have begun treatment (gradually, starting at 100mg moving to 300mg) not because I have gout, but because my uric acid level is at the very high end of normal. I am led to believe that the allopurinol supression of elevated uric acid is not only a pre-emptive tactic against possible future gout, but that the weight of evidence from clinical trials, one reported as recently as May 2006, is that an elevated level of uric acid has been established as a feature of CHF, both as a symptom and prognosis.
     I am not sure that most cadiologists routinely check uric levels. It was my PCP that triggered this for me. Everyone's case is different, but those with high uric acid should at least consider the pros and cons of doing something about it. PeterSperl@cs.com


James N, March 19, 2007 - Well, I am officially in freakdom. After 3-1/2 years, my Medtronic Marquis Insync II 7289 just sounded an alarm. It was an alternating tone alarm which means something is outside programmed ranges. Naturally, this would happen on a Sunday morning so I'm waiting for the on-call service to call me back (it's been 20 minutes but seems a lot longer). I'm guessing that the battery must have dropped below acceptable parameters because other than being nervous as all get out, I feel fine. More as it comes. noctaire@infobin.org


Nancy S' March 19 reply to Carol's March 12, 2007 - Hi Carol, I have rheumatoid arthritis and also can't do many exercises but all of my doctors have recommended water areobics. If there is a health club which offers this, it might be best for you or maybe a YMCA. I also just had back surgery and the surgeon said that a lot of people get relief doing yoga. There is a channel on our satellite television that has yoga that you can work along with or there are video tapes I'm sure. Good luck and I'm glad that you're feeling better. Hopefully you will continue to get better and better still. Nancy. ns1@alltel.net


Linda K's March 20 reply to Marcia H's March 19, 2007 - Hi Marcia, When you say "long term heart" what do you mean? After my chemotherapy they told me I had a "mild cardiomyopathy" and reduced cardiac output but felt it was nothing to worry about. They never used the words heart failure and I knew nothing about it. I don't know if they didn't want to say those words or what, but I found out about it the hard way three years later in the hospital when my ejection fraction (another word I had never heard) had dropped from 35% to 15%.
     Among the first symptoms I had along with the fatigue and waking up gasping for air, was a nasty fluttery feeling of anxiety. Though I tried to explain as best I could that I wasn't actually anxious, but that was the only way I could think to describe the sensation in my chest. It was quickly assumed that I was having panic attacks since my stress test showed that my heart had not changed!
     Apparently my symptoms started getting much, much worse before my EF changed. I don't know if your condition is anything like mine, but just because the numbers are the same doesn't mean your heart is behaving the same way. Nobody thought it was my heart because of my age and activity level, and the fact that I have never once showed evidence of edema on clinical exam, including when I was coughing blood! That includes testing by a lung specialist who kept asking me, "Are they sure it's not your heart?" lindakasunick@adelphia.net
 
Jon's note: This in spite of the fact that the medical literature makes it clear that anyone who has chemo at any time requires regular echoes for the rest of their life because the chemo is proven to cause heart failure as much as 10 to 15 years down the road. Doctors sometimes really make me see red.


Tom S' March 20 reply to Marcia H's March 19, 2007 - Hi Marcia, Has your doctor ordered a complete blood workup for you? It's possible that your body is lacking something that is mimicking low sugar symptoms. bigheart@muchomail.com


Jonette O, March 20, 2007 - Hi all, I am newly diagnosed with HCM. This has come as a complete surprise to me since I believed that I was in excellent health, took meds for blood pessure and cholesterol, and saw my PCP on a regular basis. I had been to see a cardiologist shortly before this diagnosis, which included a trip to the emergency room and a 4-day hospital stay. I knew something was wrong, but really thought it ws the flu or pneumonia. So much for what I know.
     I am trying to get more information on what to expect for the progression of this type of heart problem, what types of life changes to expect and the best way to get through this with a smile on your face day by day.
     I do weigh myself everyday, control what I eat, limit stair climbing, limit picking up more than 10 pounds, and listen to my body when it says, "Sit down now." I can't help but mourn the loss of my life as it was 3 months ago, but I can see from this point that I was having heart problems even then and just didn't recognize it.
     Currently my heart problem is being controlled with meds, but the cardio guy says that if this doesn't work, there are 2 different surgeries that can be done. One could be done in this state (Delaware), but the other would need to be done in South Carolina since it is still relatively new. Even with the meds (Lipitor, Toprol-XL and Verapamil) and controlled release nitro, I still have some chest pain. It only lasts for a few seconds. Is this normal?
     One other thing that is really getting to me is that I am sweating profusely frequently throughout the day. The temperature outside is in the 30s. Is anyone else having this problem? Is it a side effect of one of the meds? Any help would be appreciated. Thanks. oldham10@msn.com
 
Jon's note: I think I can safely say that unusual sweating of several kinds is part of heart failure, regardless of type of failure. Bummer. With me, I can't stop sweating once I start.


Carol H's March 20 reply to Nancy S' March 19, 2007 - Hi, We are fortunate enough to have a pool in our back yard which we should open for swimming in late April (with a little help from the heater). It really is the best exercise for me. I still hope to get at least one new knee joint this year.
     My experience with Coreg hasn't been as good as expected. After a delay between the beginning dose of 3.125 mg twice a day, I was able to double it. The initial effect was great for about a week. I felt better than I had in a long time. After the first week, I went downhill. I seemed to feel worse every day. I was having some chest pain and pressure, tightness, and exhaustion; also some shortness of breath. I went back to the cardiologist and dropped back to the initial Coreg dose. I also increased my lisinopril from once to twice a day.
     After a few days of that, I am feeling better. Has anyone else had trouble with Coreg? I hope after a little time I can increase it again. hollidaycj@cox.net


Melanie M's March 20 reply to David E's March 14, 2007 - Hi David, I also go to the University of Virginia and see Dr. Bergin. Where in Virginia are you located? canaan1297@aol.com


Ann L's March 20 reply to Kathy K's March 19, 2007 - Hi, Regarding raising Coreg dose, keep going, I say. Did your doctor set a target dose? Mine recommended 25mg twice a day, the maximum dose for my body weight, but doubted I could get there because I could not tolerate it. I was determined to make it.
     Some of the dose raises were more difficult than others, making me sleeping and lethargic. Overall, however, I did tolerate the maximum dose and feel that I have done something important for my health. Gradually I have become used to living with the effects and they have gradually moderated. Dry eyes is a side effect that I could do without, but maybe something else other than the Coreg could be responsible.
     I am able to exercise each day and except for having to nap every afternoon without fail, I live a full life. Some of the really physical activities like aerobics, hiking uphill, and kayaking have had to be exchanged for more moderate ones such as yoga and walking, and biking on flat land. annlau@davtv.com


William J's March 20 reply to Kathy K's March 19, 2007 - Hi Kathy, I have been on Coreg since February 1, 2006. I could not take Coreg until I had a biventricular pacer/ICD implanted since I had an irregular heartbeat inclusive of atrial fibrillation and now I am in total a-fib. I started Coreg at 3.125 mg and went up to 6.25 mg in October 2006, then to 12.5 mg (all twice daily) in January of 2007.
     My blood pressure had been quite low initially but has come up a bit and so I was allowed to take more Coreg. In early March I went to 25 mg Coreg once a day and 12.5 mg once also. I did not feel well with the additional dose, having some deep fatigue and my breathing became more labored. In addition, I picked up about 3 pounds. I lead a very disciplined lifestyle when it comes to weight and I have maintained my core weight (170 lbs at six feet tall very well since my heart attack not quite 2 years ago. I have not given up on Coreg as my target dose is 25 mg twice a day.
     I like your idea of having Coreg added at smaller doses than doubling it immediately. Coreg is a wonderful medication but for many of us it has some unpleasant side affects. My EF continues to be low at about 20 to 23%. I was diagnosed as between a class 3 and 4 CHFer, which is not very good but I don't feel all that bad except for the breathing problems. I exercise almost an hour a day on a reclining bike (with modification) and my attitude remains positive.
     Good luck to you. This is a wonderful site and worthy of a donation to keep it running. Bud. Budjoy4@aol.com
 
Jon's note: A note - we almost didn't make enough money last year to keep our non-profit 501(3)c corporation status, so if you've never donated and can afford to do so, please consider it.


Nancy S, March 20, 2007 - Hello all, I'd like to know if anyone has the new pacemaker that allows you to have an MRI. It's nearly time for my pacer to be replaced and I'd love to have them put that type in. Since I have rheumatoid arthritis I'm sure I'll have to be having more tests at some point and I sure don't want to have another myeolgram.
     One of the questions I have is, are they cost comparable and another question is, do they have them for BiV function yet? Thanks for any information. Nancy. ns1@alltel.net


Nancy S' March 20 reply to James N's March 19, 2007 - Hi James, I have a Medtronic pacemaker and am curious about what the doctor told you when they called you back. My pacer has never done anything but the battery is getting to the time limit. They told me that it would last approximately 5 to 6 years. I had it implanted in 2001. They do interrogate it each time I go to the CHF doctor. Mine is a BiV but I don't think there should be much difference in the working of them. I hope everything is okay with yours. Nancy. ns1@alltel.net


Kathy K's March 23 reply to Ann L's March 20, 2007 - Hi Ann, Thanks for your response (and to others) about increasing Coreg dosages. My target dose is 25mg twice a day, which seems to be the recommended dose for those under 180 lbs body weight. I'm encouraged to know that feeling extra sleepy and in need of afternoon naps is normal. I'm glad to know I suddenly just don't have a fit of the lazies since I've now stopped working. I'm up to the max dosage as of yesterday.
     I agree that the side effects with the earlier incremental increases (difficulty breathing and chest tightening) seemed more severe that the last ones. Increasing very gradually (I've been working on doubling dose from 25 to 50mg per day since November) has worked for me once I finally got a little help with the water weight.
     My resting pulse has gone from about 82 to about 64 since I increased the Coreg dose. I hope that with a regular exercise program, I can strengthen my heart muscle and improve to gain back some endurance. For any one in North Carolina, there are some great CHF doctors at Wake Forest/Baptist Hospital, Winston Salem. I've been their patient for my 10 years. I think it's great for us to keep encouraging each other and sharing experiences and info. Thanks, Kathy. mkk@pinelink.org


Linda K's March 23 reply to Jon's March 20, 2007 - Hi Jon, A really important thing for anyone to know these days who is on chemo is that they seem to be backing off adriamycin more and more because they're finding out that the risks I was quoted in 2003 were wrong. At the time I was told that the risk of heart damage was less than 1%, but when you have cancer, you gotta do what you gotta do. I figured I was pretty unlucky to be one of the few that got heart damage, but I'm reading now that they've revised that number to between 7 to 9%. Wanna make any bets as to whether that goes higher?
     The attitude of "it can't be your heart because your numbers are the same" made me go through 2 useless cardiologists, one brain-dead PCP, and one night in the hospital hooked up to heart monintors that showed nothing before I finally found the people who could figure it out. I try not to think about it because it makes me feel sick. lindakasunick@adelphia.net
 
Jon's note: The number is higher. This is due to how far down the road heart damage from chemo becomes apparent. It's in the literature everywhere under "chemo-induced cardiomyopathy."


Stephanie L, March 23, 2007 - Hi, Does anyone have experience with familial dilated cardiomyathy? My aunt died suddenly at 41 from this and now my 34 year old brother just died of the same thing. The autopsy showed his heart size was over 600 and he was only 5 feet 6 inches tall, weighing 130 pounds. They said it must've been an ongoing problem for at least the last one to 3 years.
     I am going to get mine checked out next week by echo. Does anyone else have experience with this? Also I have been ill with a viral infection and my temperature went as high as 104 degrees F. Well, my heart started to have some strange weird beats and I wonder if this has happened to any with this disease. I attributed it to my high fever but the more I think about it, hmmmm.
     Thanks in advance, Stephanie L. mommamialiv@yahoo.com


Tom S, March 23, 2007 - Hi all, On February 28, 2007 my 16 year old daughter rolled me into a "tweaking" session appointment in a wheelchair (supplemental oxygen in tow) with my BIV pacer/ICD techs - a session that was both somewhat painful because of a lot of pressure applied by the echo operator with the transducer against my my ribs. The nearly two hour session seems to have been worth it.
     I don't know if I can directly correlate the tweaking of my device for optimal output but the bottom line is that I feel like a new and improved version of myself. Since the procedure I seem to have more stamina and do not need the supplemental oxygen as much as I did prior to the session. The purpose of the tweaking was to improve blood output from the heart and at this point I think the tech and the cardiologist who finalized the setting can say "mission accomplished." bigheart@muchomail.com


Carol H, March 23, 2007 - Hello, I am so glad to know that I'm not crazy and my horrible hot flashes are to be expected. They drive me crazy, but am getting used to them (as if menopause wasn't enough). They actually were less severe with the increase in Coreg dose but as I have backed off that I have expected a fire up again.
     Jon, I just read your note about chemo causing heart failure someday. I talked to my grandkids' other grandma and told her she should ask her daughter. She said she'd never heard about that happening. Thanks for any info. hollidaycj@cox.net
 
Jon's note: Carol, Go to Medline at www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed and search for "chemotherapy-induced cardiomyopathy" without the quote marks. That's just for a starter. Then do the same at google.com with or without the quotes marks.


Scott B's March 23 reply to Carol H's March 20, 2007 - Hi Carol, Coreg might make you feel okay for a day or so after a dose change, but it took several weeks after each step for me to tolerate the dose - I just felt miserable. I still feel a little fatigued from Coreg. Every once awhile I forget to take it and I feel like a million bucks but over the long term, I think this drug is saving my life. When I think back to how I felt 5 years ago I feel so much better now. My EF has only increased slightly, my Vo2max is a measly 26 (which is very poor for a 37 year-old male) but I still feel pretty good. At least, nothing a good coffee can't straighten out most of the time. Scott B. scott.brown@sunlife.ca


Sharon S, March 23, 2007 - Hi all, Are the BiV pacers with ICD larger than the regular dual chamber pacemakers? ericandmegansgrandma@yahoo.com


Patricia P, March 23, 2007 - Hi, I haven't posted in a while but read daily. I was diagnosed in 2001 with CHF and cardiomyopathy. I have been doing well until a few weeks ago when I started having chest pain and shortness of breath. I now have V-tach but not yet serious enough to be treated. Last week I had a Cardiolite stress test and it showed "moderate, partially reversible apical, septal and inferior perfusion defect" with an ejection fraction of 33%. Jon, can you please tell me what this means? I am scheduled for a heart cath next week with possible stents. Thanks again for keeping this site going. I hope you're feeling much better soon! Patricia. pgp24815@aol.com
 
Jon's note: Thanks. This means that certain areas of your heart are not getting enough blood supply, but most of the problem is probably due to fast heart rate and/or partially blocked coronary arteries that they hope to clear during your cath. See the dictionary links at chfpatients.com/links.htm#dictionaries to discover what areas all the terms mean.


Tony M, March 23, 2007 - Hello, I am a 70 year old male. In May of 2006 I was rushed to the hospital in Massachusetts diagnosed with CHF, with an EF of 25%, dilated aortic root and descending aorta; and left ventricular hypertrophy. The cardiologist suggested I might want to consider an ICD at some point. I was put on Cozaar, Lopressor, and Lasix. I was already on allopurinol for gout.
     I returned to Florida in July and was treated by a PCP with no problem. In January of 2007, I called what is considered one of the best clinics in Florida but was told they didn't have a CHF specialist but that all their cardiologists were interested in heart failure so I made an appointment.
     The doctor was a nice man who listened to my heart and said I needed aortic valve surgery because the valve was leaking, but no emergency. Then he ordered an echo stress test, chest x-ray, and Holter monitor. My EF had risen to 40 with left atrium moderately dilated. The cardio said my meds are working for heart failure but nothing but an operation would cure my leaky valve. He wants to do a catheterization and TEE before an operation.
     Now my question: One doctor said I needed an ICD and never mentioned an operation. The other doctor right away wants to do an operation. When I asked my PCP his opinion, he replied when you ask a bricklayer to build your house he builds it out of bricks. Does anyone have any opinions as I'm thinking of finding a true CHF specialist for a third opinion. phantomhobe@webtv.net
 
Jon's note: Good idea, Tony.


Tom S' March 26 reply to Sharon S' March 23, 2007 - Hi Sharon, This will give you a good idea on the size of a BiV pacer/ICD. The unit just about fills the cupped palm of the average adult hand. See http://upload.wikimedia.org/wikipedia/commons/thumb/b/b1/Pacemaker_GuidantMeridianSR.jpg/180px-Pacemaker_GuidantMeridianSR.jpg bigheart@muchomail.com


Debra S' March 26 reply to Sharon S' March 23, 2007 - Hello Sharon, Yes, they are quite a bit larger. Debra. r_steinberg@sbcglobal.net


James C, March 26, 2007 - Is anybody else trying Coreg CR? I just switched to it. jamesnyc360@hotmail.com


Valerie R, March 26, 2007 - Hi all, I have a BiV pacer but only two leads are working, so I guess that makes it a pacer. In any case, I had it implanted December 8, 2002, which would make this December 8th five years. Recently they have me coming for a Metronic check every three months. On my most recent check, I asked about the audible alarm and the guy said he could turn it on and set it for me. He set it for once a day at 11:00 AM. It sounds like a moderately loud 2 to 3 second car alarm. I am glad I asked! At that point, he said I need to get it checked but it should be good after that for several months. vgrogers@aol.com


Scott B's March 26 reply to Tony M's March 23, 2007 - Hi Tony, You might want to consider meeting with an electrocardiologist as well. You could look at the defibrillator as a safety net. In case your heart stops, a defibrillator could be your only chance for survival (and a lot of places do not have these things just laying around; even if they did, they probably do not know how to use them properly. Also, sometimes pacing can improve heart function.
     I think the heart failure specialist is a good idea. It always makes me uneasy how the "experts" cannot agree on treatment. My heart failure specialist said, you get 5 electrocardiologists in a room and you get 5 different opinions.
     When you are potentially dealing with someone's life, doctors get criticized for recommending an ICD which is never used - and they get criticized if they do not recommend an ICD and the patient passes away from a heart-related event. Best of luck. Scott B. scott.brown@sunlife.ca


Jon, March 26, 2007 - Hi everyone, Well, I've been zoned out from lack of sleep. The good old insomnia came back with a vengeance. I believe it is pain-killer related although it took awhile to narrow it down. Better to hurt while trying to sleep than go slowly insane from not sleeping. <g> Jon.


Debra S' March 27 reply to James C's March 26, 2007 - Hi James, Your e-mail address did not go through. I also tried Coreg CR. The side effects were worse than with regular Coreg, so I switched back. How are you doing on it? My doctor at Cleveland Clinic wanted me to wait but I was in a hurry to get rid of the side effects.
     I hope you are feeling better Jon. Debra. r_steinberg@sbcglobal.net


Kathy K's March 27 reply to James C's March 26, 2007 - Hi, What is Coreg CR? How is it different from regular Coreg? I would like to know more. Thanks. Kathy. mkk@pinelink.org
 
Jon's note: It stands for Coreg Controlled Release, a once-a-day version of Coreg that was supposed to be FDA approved late last year.


Mari S' March 27 reply to James C's March 26, 2007 - Hi James, My name is Mari and I have had cardiomyopathy since 1998. I was diagnosed at age 45 with an EF of 10%. I have had my ups and downs, as many have that post here on the message board. In November of 2006, I had a routine MUGA scan and found out my EF had dropped to 25%, which was a complete surprise to me since I was walking over 2 miles a day, etc. Of course, my cardiologist started upping my Coreg dose immediately. The largest dose I ever took was 12.5 mg twice a day back in 1998, and was decreased due to side effects and my EF held its own at 40 to 45%.
     I have been going to a cardiomyopathy clinic every two weeks to increase Coreg again and I've had to cut the pills in half and take them 2 to 2-1/2 hours apart so the side effects are not as bad (time releasing myself, so to speak). Right now I'm taking 18.75 mg twice a day. I am very excited about Coreg CR and wanted to know how much you are taking and where you are getting it? Our pharmacies here in Memphis, Tennessee do not have it yet and the Coreg web site hasn't released it is available yet. Is it very expensive?
     It would be wonderful to take one pill a day of Coreg and I'm anxious to see how you do on the new CR version. Mari. MS254@aol.com


Jacky B's March 27 reply to Jon's March 26, 2007 - Hi Jon, That is known as being between a rock and a hard place! Neither place is where you want to be. I hope the sleep problem resolves soon. Take care. Jacky. jackymwb@earthlink.net


Maya S, March 27, 2007 - Hello, I am working on a university project and am interested in how you all value your pacemakers? I noticed that some of the posts here discuss aspects you'd like in your next one. Could you elaborate? Also, how much choice did you have in your pacemaker choice, first and subsequent? Are you able to choose or is it through your physician? Any information would be great. Thank you! Maya. suttom@rpi.edu
 
Jon's note: Please reply to Maya's e-mail address instead of posting - thank you.


Jon, March 31, 2007 - Hi everybody, I apologize for the lapse in posts. I had a major reaction to a meds change that was not heart failure-related and am still recovering. It may take me a couple of more days to get this online. Jon.


Debra S, March 31, 2007 - Hi, Coreg CR is available through all CVS pharmacies. Debra. r_steinberg@sbcglobal.net


Lowell P, March 28, 2007 - Hi Jon, I have been trying to find a normal left ventricle diameter (Jon's note - see the article down the page for tables of heart sizes) to compare mine with. I think, if I am reading it correctly, that my LV diameter is about 6 cm. I know it's enlarged but wonder to what degree.
     I also wonder about a comment my doc made. When I asked him his opinion on the value of exercise in CHF he said it was minimal. What do you make of that? Have I been walking for hours and miles for nothing? Lpepper3m@aol.com


Jon's April 1 reply to Lowell P's March 31, 2007 - Hi Lowell, What do I make of it? Ignorance. See our exercise page for just a few of the many trials showing improvement in CHFers who exercise. Resistance training and aerobic training both give benefits.
     Consider this: The Vo2max test is the gold standard for heart transplant testing. If your Vo2max is under 14, you qualify more than 90% of the time. The only thing that significantly improves Vo2max is exercise. An EF of 10% does not automatically mean you need a transplant but a low Vo2max is considered to mean just that. So you tell me, should you exercise? ;-) Jon.



All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007 Jon C.

Talk to Jon Site Index