The paperwork never ends The Archives
November 1-15, 2004 Archive Index CHFpatients.com

Roger H 11-1     update
 
Yvette's 11-1 reply to Ann Lau's 10-30     flu shot experience
 
Peter S 11-1     seek Florida resources and more
 
Geri 11-1     seek South Carolina CHF doc
 
Joy 11-1     seek Vioxx experiences & alternatives
 
Mike 11-1     update, get a heart failure specialist
 
Peggy A's 11-1 reply to Ann Lau's 10-30     finding a flu shot
 
Scott Brown's 11-1 reply to Hal's 10-30     looking for allergies
 
Ron 11-1     seek ideas on losing more weight & more
 
Nick 11-1     claim forms web site
 
Greta's 11-2 reply to Marty's 10-30     colds, coughs, and flu shots
 
Ann M 11-2     CHF from chemo - questions
 
John W 11-2     thanks for all the info
 
Lauren's 11-3 reply to Ann M's 11-2     Coreg, coping and more
 
Carla's 11-3 reply to Ann M's 11-2     coping with heart failure & more
 
Pat H's 11-3 reply to Ann M's 11-2     coping with heart failure & more
 
Pat 11-3     seek CHF doc in North Carolina, USA
 
Tom S' 11-5 reply to Pat's 11-3     finding a CHF doc
 
Staci H's 11-5 reply to Peter's 11-1     finding a CHF doc
 
Scott Brown 11-5     any ideas on life expectancy?
 
Betty's 11-5 reply to Ann M's 11-2     old survival statistics
 
Lori K 11-5     does anyone get chest pain with flu/cold?
 
Rita Carrillo's 11-5 reply to Jon's 10-27     further info
 
Dee 11-5     seek menopause relief ideas
 
Sherry 11-6     how can this be?
 
Laura 11-6     seek carb to symptoms link
 
Yvette's 11-6 reply to Scott Brown's 11-5     life expectancy
 
Marty 11-6     to take Inspra or not
 
Jon's 11-6 reply to Marty's 11-6     to take Inspra or not
 
Marty J 11-8     will Medicare pay for a CHF doc?
 
Oliver 11-8     why is my heart enlarged?
 
Jon's 11-8 reply to Oliver's 11-8     my thoughts
 
Clara D 11-8     heart stocking trial
 
Jon's 11-8 reply to Clara D's 11-8     heart stocking trial
 
Cathy 11-8     what about this "fluttering?"
 
Louisa 11-9     can I stop my meds? seek similar experiences
 
Jon's 11-9 reply to Louisa's 11-9     being "cured"
 
Dave 11-9     seek heart wrap information
 
Jon's 11-9 reply to Dave's 11-9     how about other options?
 
Ron 11-9     am I losing Coreg's benefits at this dose?
 
Dave C 11-9     my head is spinning - seek suggestions
 
Louisa 11-9     upon reflection
 
Tony Myrick 11-9     the Acorn heart wrap
 
Jon's 11-9 reply to Tony Myrick's 11-9     the Acorn heart wrap
 
Ann M 11-9     how do you cope with thirst?
 
Steve Kahn's 11-9 reply to Dave's 11-9     the Acorn CorCap device
 
Steve Kahn's 11-9 reply to Louisa's 11-9     staying on meds, pregnancy risks
 
Charles' 11-10 reply to Ann M's 11-9     coping with thirst
 
Mary Anne 11-10     update
 
Joy's 11-10 reply to Cathy's 11-8     arrhythmia experiences
 
Tony Myrick's 11-10 reply to Jon's 11-9     weighing all the information
 
Louisa 11-10     seeing another doctor soon & more
 
Rick 11-10     need to lose weight fast
 
Greta 11-10     seek info on Natrecor
 
Sherry's 11-11 reply to Jon's 11-6     would appreciate some input
 
Jon's 11-11 reply to Sherry's 11-11     I suggest a different doctor
 
Donald 11-11     need some input on care & pain relievers
 
Laura 11-11     thyroid & carbs questions
 
Jon's 11-11 reply to Laura's 11-11     thyroid, carbs & fluid retention
 
Pen 11-11     emotional stress & heart failure
 
Jon's 11-11 reply to Pen's 11-11     emotional stress & heart failure
 
Scott 11-11     seek pulmonary embolism experiences
 
Beckie 11-11     what is going on?
 
Margaret D's 11-12 reply to Scott's 11-11     
 
Pen's 11-12 reply to Jon's 11-11     thanks for the info
 
Jon 11-12     scanner question
 
Sandy's 11-12 reply to Pen's 11-11     stress aggravates heart failure
 
Cathy's 11-13 reply to Scott's 11-11     pulmonary embolisms, condolences
 
Jamie 11-15     the Acorn heart wrap
 
Sandy H 11-15     seek disability timing experiences
 
Nancy S' 11-15 reply to Scott's 11-11     condolences
 
Oliver 11-15     A-heft and vitamin E news - questions
 
Jon's 11-15 reply to Oliver's 11-15     A-heft and vitamin E news
 
David 11-15     seek BiV pacer information
 
Crystal 11-15     seek experiences stopping spironolactone
 
Richard 11-15     questions
 
Jon's 11-15 reply to Richard's 11-15     some info
 


Roger H, November 1, 2004 - Hi everyone, Here I thought I was doing good, but had an appointment with the pulmunary doctor and told him of how my bi-pap machine didn't seem to be working just right. Right away he said let's do a sleep study - which I reminded him I just had one last year and was zero apnea with the machine. So that happens on November 12. I also went for a cleaning at the dentist and found out I need two crowns - one in November and one in December. Talk about getting cleaned. Still, I'm doing good as far as my heart failure - gaining my normal 4 lbs or so during the week and then a pill to drain! rkharmony@highstream.net


Yvette's November 1 reply to Ann Lau's October 30, 2004 - Hi all, I have made sure I get the flu shot each year for the last 7 years. The one time I did not, because I erroneously thought you could get the flu from the shot, it took me a month to recover. Yes, a few people may have a reaction from the shot but ask any doctor and they will tell you that you do not get flu from the shot. If you do get the flu, you already had it. There is approximately a 2 week incubation period before you actually show signs of the flu. The shot has an inactive virus that helps your body build up immunities to that particular strain. If you have no egg allergies, your doctor may recommend it. Everyone here with a heart condition qualifies. If you still work, to protect yourself from your co-workers, you may want to get the shot, unless you can afford to take a month off from work to recover. Think of one your bad physical days and double it. finch32219@yahoo.com


Peter S, November 1, 2004 - Hello, If there is someone out there with roughly my profile, I would enjoy exchanging views. I am a 73-year-old retired male professional who has only recently been diagnosed with CHF following a heart attack six months ago. My EF is somewhere in the low 30s, although I have asked my cardiologist to prescribe a MUGA that I will take this week for a more precise view. At this point I am pretty much asymptomatic and exercise regularly (swimming laps and playing moderate tennis). I am, of course, concerned with doing all I can to slow or halt this progressive disease, and trying to educate myself bit by bit. So I am just wondering if anyone else at my age and stage is going through the same thing?
     A second question addressed to anyone, not just someone with my profile: Is there a kind of specialized clinic one can go to in southeastern Florida to get both specialized tests/evaluation and find professionals who will take the time to help in the education process? PeterSperl@cs.com


Geri, November 1, 2004 - Hi, My husband, age 71, has heart failure, has a pacemaker/ICD implanted, has lost a leg due to circulation and diabetes, and I am looking for help to find a CHF specialist in the South Carolina area. I am not saying we are dissatisfied with the cardiologist we have now, because we aren't but if there is a CHF specialist out there I want to get his opinion as to what we do next. Right now they are indicating there are only about 6 months left for my husband. I don't want to accept that. The latest treatment was IV Natracor, which is fairly new, I am assuming. If someone out there can help us, please e-mail me at ggp1917@yahoo.com


Joy, November 1, 2004 - Hi everybody, Here in New Zealand the chronic pain relief drug Vioxx has been pulled from the market because of research questions about a link to heart disease. I have been on Vioxx at 25mg per day for approximately 3 years. So my family doctor switched me to Arcoxia and now I read that all the COX 2 inhibitors may go under the spotlight for the same heart disease link questions. Is anyone else on Vioxx and have heart disease? I cannot tolerate the usual, older NSAID drugs for other reasons. Joy. farrell-kelly@xtra.co.nz
 
Jon's note: Celebrex is better for heart failure patients for Vioxx, something CHF docs have known for a couple of years. See www.chfpatients.com/heartbytes.htm#celebrex.


Mike, November 1, 2004 - Hello everyone, After learning about this web site and reading all the medical conditions and all the info on this site I thought I was the only person with the symptoms. Since 1998 my health was on a steady decline. Doctor after doctor all thought I was wacked! In 2000 I saw an electrophysiologist for passing out episodes. They implanted a pacemaker for sick sinus syndrome. While doing the procedure they noticed an irregularity about my heart and advised me to see a cardiologist. I went to numerous doctors and nothing was found.
     In 1996 I met a woman in church who told me her story about having 4 open heart surgeries and a pacemaker. She went through trying times until she met this cardiologist in Florida. She gave me the name at that time. I went to see this doctor. After several tests and procedures I was diagnosed with heart failure. I was put on Coreg, avapro and Lasix. I was forced to stop seeing him due to job and distance - what a mistake!
     Since then I have had 2 strokes, several TIAs, and my condition was getting worse every month. The cardiologist I was seeing kept saying they could not find anything wrong. As of 2004 I now have a-fib and a heart rate as high as 180 bpm. Some last hours now they decide to to do a cath and EPS, and loop monitor. The cath showed my left ventricle very enlarged, an EF of 30 to 40%, a very thick heart wall and a-fib on the loop recorder. They put me on sotalol but I had a reaction, so I went on sotalol and then Norpace but had reactions, so they put me back on amiodarone (Cordarone).
     I decided to go back to the cardiologist who knew CHF. Thursday I took all reports to him and he read my journal on meds and my symptoms. After a complete exam he reported to me that other meds are on tap. I was put on Coreg 25mg in the morning and 50mg in the evening, Lasix 40mg, Monopril 10mg twice a day, digoxin (Lanoxin) 0.25mg, spironolactone (Aldactone) 25mg, Coumadin 15mg. After 3 days, my condition is improving.
     I would like to say Jon, thank you for creating this awesome web site! The info you provide to all of us is very informative. Your advice on getting a CHF specialist is very important to aid us in correct diagnosis and treatment for heart failure. Please reply on any info. My heart goes out to all of you - there is hope - seek and you shall find what you ask for in prayers. meatt@bellsouth.net


Peggy A's November 1 reply to Ann Lau's October 30, 2004 - Hi, I haven't been able to get the flu vaccine here either. I live in Mississippi. State employees were supposed to have a clinic last week but it was cancelled because the School of Nursing couldn't get any vaccine. I had a cold/sinus infection after I returned from Montana with a church group on a mission trip. It took me awhile to get over it, but I finally did. I see my cardiologist on the 12th of this month and I'm going to ask him about the vaccine issue. pegalford@its.state.ms.us
 
Jon's note: Both my doctors ran out even before I called about it!


Scott Brown's November 1 reply to Hal's October 30, 2004 - Hi Hal, My dad had the same thing and was never able to find a root cause. Perhaps poor circulation or heart meds were contributing factors. I would suggest an allergy medicine like Clariten. Give it a few weeks to work. When the itching got bad, he would get welts as well. Benadryl is a possibility, so it may be best to give each approach a few weeks. If both are effective, pick the cheap one. Also, try applying a lotion for dry skin. Vasoline brand makes some cheap effective ones. This may only relieve the symptoms, but it may prevent it from happening at all.
     Finally, I get itchy (sometimes with hives) when I am "dry" from taking diuretics and then consume something with elevated sodium. To track this scientifically, track your food and fluid intake. Compare the meals where there is no adverse reaction to the meals which have a reaction. Compare sodium levels of the foods, total fluid intake with the meal, and the foods themselves (to rule out a new food allergy). Good luck with your investigation. Scott Brown. kitchenerguy@rogers.com


Ron, November 1, 2004 - Hi, I was diagnosed with CHF, hypertension and type 2 diabetes in 1997. At he time I weighed 290 lbs. I am 5 foot 8 inches tall. My ejection fraction was 31%. My doctor put me on Coreg, Accupril, hydrochlorothiazide, Lipitor, and insulin injections. He told me to lose weight. Since then, my blood pressure has come under control, my heart rate is back to normal and my ejection fraction is up to 61%. The insulin made losing weight impossible. I actually gained weight fasting.
     So in March of 2003, I took a big risk by stopping insulin and going on the Atkins diet. It worked for me. I lost 60 lbs in 6 months and my blood sugar came under very good control. The down side is that my cholesterol remains high, and my weight has been stuck at 240 for the past year. My doctor has doubled the dose to 40mg on the Lipitor. Hopefully this will bring the cholesterol down. The weight loss seems to be on a plateau. Does anyone have a similar experience or any suggestions? Ron. papaferguson@hotmail.com


Nick, November 1, 2004 - Hello, I just wanted to share some information with any of you who are dealing with a disability insurance claim. Check out the web site www.disabilityinsuranceforums.com. It is a valuable resource. packupletsflyaway@hotmail.com


Greta's November 2 reply to Marty's October 30, 2004 - Hello Marty, About five weeks ago I began feeling the familiar discomfort of a cold coming on. In three days it manifested itself with a cough and scratchy throat. In the next week it moved to bronchitis and the cough got much worse. I knew it wasn't the flu because I had no fever. I ended up going to the doctor for my cough and she gave me a prescription for Tussionex A - good stuff. It stopped my cough and allowed me to sleep. Actually, it made me sleepy and it's no wonder I slept so well. I had no side effects from the cough medicine so I recommend you check it out with your doctor.
     Also, for those of you wondering about the flu shot, take it, you really, really need it. Also if your doctor, health department, or whoever gives the shots is screening because of shortage; because you have CHF you qualify because you are considered high risk. Blessings, Greta. gjohnson@arkansas.net


Ann M, November 2, 2004 - Hello, I have just been diagnosed with heart failure and have been devouring this web site - it's very helpful. My heart failure was caused by taking Adriamyocin Cytoxin when I had cancer in 2001, damage to the heart being a side effect of this chemotherapy. A year ago my EF was 40% and I was told this was borderline normal, until a few weeks ago when I went to an emergency room because I couldn't breathe. Since then I have been told I have CHF and my EF is now 25%. I am on Lasix, Coreg (now 6mg shooting for 12), and lisinopril.
     From what I have just read, I understand that even if my heart function improves, I will not feel any better. Is that correct? It seems I have read somewhere that 80% of women diagnosed with CHF die within 8 years. I continue to work, but wonder if I will be able to continue working. Are there any norms for this? Do you all live and work normally? I am very confused about this illness. Thank you for your help. anna@blupa.com
 
Jon's note: Probably false and probably false. These kinds of outcomes are possible but are not by any means certain. I have had CHF 10 years and feel better with improved heart function at this time. Also, see http://info.chfpatients.com/Staying_on_meds.txt


John W, November 2, 2004 - Hi everybody, Heart failure knocked me down gasping for air about a month ago. I spent 5 days in the hospital. Since then I have been digesting all I can find about this. This site has a lot to read. Thanks for it. John W. jfwjfw2000@yahoo.com


Lauren's November 3 reply to Ann M's November 2, 2004 - Hello, I was diagnosed with DCM in 1998. I was seeing a regular cardiologist until April of 2003, when I was referred to the Heart Failure Clinic at the University of Cinicinnati. For anyone living in the area, it is a Godsend. After a round of comprehensive tests I was started on Coreg and re-started on prinivil (which the other doctor had allowed me to quit taking due to very low blood pressure). It has taken 18 months to reach 21mg of Coreg twice a day but the results have been dramatic, in terms of heart function.
     This is a hard condition to accept, but once you start paying attention to your body's signals and clues, and resting when necessary, it is possible to live a very "normal" life. I am a 45 year old female with 2 teenagers still at home. I work 35 hours a week and I have some bad days, but for the most part I have come to terms with this condition and my acceptance has helped me to feel as well as possible.
     This site is the best I have found so far for good and accurate information. Good luck to you. Thank you Jon for this wonderful web site! lauren_a@zoomtown.com


Carla's November 3 reply to Ann M's November 2, 2004 - Hi Ann and welcome! If anything good has come out of all of this, it's Jon's site! I understand completely how you feel. I was diagnosed in January, 2004 and this has been the longest (and shortest) year of my life. I have viral cardiomyopathy. I can tell you that your first mistake is to read old data and information off unreliable Internet sites that say we only have 5 years. That's simply not true! I have a friend that was on a heart transplant list 12 years ago with an EF of 7%. He's now at 60% and feels wonderful. My EF was 25% at diagnosis and continues to remain steady. I will have my next echo in December. However, I feel wonderful. My life has not changed at all except for the cloud of worry that constantly surrounds me but I'm getting some help with that.
     I still work full-time, exercise at Curves every morning and then go home and work in the yard. The hardest part is that I'm newly married, 36 years old and have been told no children. However, I'm very confident that I can live with this, as long as I take better care of myself and work closely with my cardio doc and internist. The most important thing you can do is to consult with a heart failure specialist. The second most important thing you can do is hang out at this site! Thoughts and prayers, Carla. carla@cnbt.com


Pat H's November 3 reply to Ann M's November 2, 2004 - Hi Ann, I was diagnosed last spring with chemo-induced heart failure. The meds initially made me feel horrid, but today I am really doing pretty good. I am adjusted to the meds and although I do get some SOB with exertion, it is not debilitating.
     I was also caught early enough that I have no fluid issues. I keep my sodium very low to make sure it stays that way. Sodium and fluid intake is critical in managing this disease. Did they not put you on any meds when your EF was 40%? How did they diagnose you - echo, MUGA, heart cath? I was first told 13% EF based on echos. A heart cath put me at 30%. I work full-time and although I sure wish I could take a nap most afternoons, I am able to continue working. The meds will most likely make you feel worse before you feel better, but stick with them. Feel free to e-mail me if you like. mondays_child_1@yahoo.com


Pat, November 3, 2004 - Hi all, After checking the recommended list for a CHF specialist in North Carolina, I decided to ask if someone will give me a referral to someone they are personally seeing. I will really appreciate your replies! patsears01@wmconnect.com


Tom S' November 5 reply to Pat's November 3, 2004 - Hi Pat, North Carolina is a big state and it would be hard to refer you to any doctor not knowing the specific city or region you live in. I live near Charlotte and utilize the services of The Sanger Clinic (which has a web site at www.sangerclinic.com. They have managed to keep me vertical and breathing for the past nine years despite an EF of around 20 to 25% with a low of 15% at one time. bigheart@muchomail.com


Staci H's November 5 reply to Peter's November 1, 2004 - Hi Peter, The Cleveland Clinic in Westin is a great place for a person with heart failure. My CHF specialist left there a couple of years ago and I moved to northern Florida so I am not familiar with any of the docs there anymore. I hope this helps! Jax4me2oo@aol.com


Scott Brown, November 5, 2004 - Good Afternoon, Someone mentioned the old one to five years to live for class 4 cardiomyopathy. I am coming up on 5 now and feel so much better than 5 years ago. My cardiologist said they are coming to think that the old numbers can be doubled. Does anyone else have thoughts on life expectancy? Is this the Altace, the Coreg, or a combination of the two? I do realize that without my diuretic, I would feel lousy again! Thanks, Scott. kitchenerguy@rogers.com


Betty's November 5 reply to Ann M's November 2, 2004 - Hi Ann, I was diagnosed with cardiomyopathy caused by the effects of adriamyocindriom as well. This was back in 1989. In February of 2000, I was diagnosed with CHF with an EF of 15%. I am currently on Lasix, Coumadin, Coreg, Cozaar, digoxin and CoQ10, and I feel great. My EF is in the 20 to 25% range depending on the test and has been since about 2001.
     Every so often, I have bouts of fatigue and SOB but it is manageable. I work full time and of course there are days that you just want to stop everything and take a nap, but my good days way outnumber my bad days. So basically I'm saying, don't listen to the old numbers listed in other web sites. Find a good doctor that listens to you and take each day as a gift. I know I do. Remember that there are a few of us here that have been battling this heart ailment for awhile, and we're still going strong! God bless. candiekiwi@yahoo.com


Lori K, November 5, 2004 - Hi everyone, I was diagnosed with IDCM in 2001, and have a LBBB and asthma. This week I started a cold and have had really bad shooting pains in my chest. I get one really bad pain that just scares me, then I am okay, then I will get more later or the next day. I have been known to get some degree of chest pain with viruses but I wondered if anyone else has this. The cause of my CM is unknown but viral origin is suspected. The pain is right in the center of my heart, just to make matters worse. I have been checked out before for clots with a d-dimer blood test and they are always negative. I am on Coreg and Altace. If anyone has any insight, I am all ears. Thanks to all. Lori. thegoof86d@aol.com


Rita Carrillo's November 5 reply to Jon's October 27, 2004 - Hello, He was seeing the doctor every 3 months for impotency. Now I believe the impotency was caused by his heart failure, which he was never told he had. He also had a cough and congestion all the time, and his doctor didn't think it was anything to worry about. The doctor was treating him for impotency by giving him testosterone. He also had some arthritis for which he had been taking Vioxx. He had noturnia and the doctor said it was probably his prostate and gave him some drug for that, but I think it was heart failure all along. He had a chest x-ray because of his cough, congestion and wheezing and was told that the x-ray showed some congestion but it was probably a cold. Well, he had that "cold" for over 3 months. lovelyritak@juno.com


Dee, November 5, 2004 - Hi, I have aortic valve disease, dongestive heart failure, and a rare form of vasculitis called Takayasu Arteritis. Along with a fistful of heart, blood pressure, and other meds, I am currently taking Methotrexate which has apparently pushed me into the beginnings of an early menopause.
     My question is, does anyone know of a medicine/hormone that is safe to take to treat premenopausal symptoms, mostly spotting and painful pelvic cramps, with existing heart failure. Most hormone replacement treatments I've researched on the Internet are unsafe or pose signifigant risks when treating someone with heart disease.
     Thanks! I hope all are well. Dee. deeposies@adelphia.net


Sherry, November 6, 2004 - Hi everyone, I am new to this site. I am a tad confused by a recent visit to my cardiologist. I was diagnosed in March of 2004 with a 100% occluded left main coronary artery and I had bypass surgery. I had a 20% EF with dilated cardiomyopathy. I am on Coreg at 25mg BID, Lisinopril at 20mg daily, Lasix at 20mg daily, aspirin at 325mg daily, Aldactone at 50mg, Altocor at 60mg, Aciphex at 20mg BID, Imdur at 15mg BID. I was told now that I am completely better, with no more dead heart muscle, no scarring from an anterior MI, nothing. I still have exercise intolerance, chest pain, SOB, and orthopnea. How can this be, someone please help? bonohay@hotmail.com
 
Jon's note: Have you had a BNP blood test?


Laura, November 6, 2004 - Hello, I have a question about heart failure and causes. I am a 35 year old woman and have suffered from sudden onset edema, chest pressure, shortness of breath (inability to get enough oxygen), tachycardia, pulse pounding in specific arteries and miscellaneous other symptoms. All my EKGs and 24-hour moniter tests were normal - I have had them done twice. After many years of dealing with this to no resolve, I have discovered that it seems to come from eating carbohydrates. These symptoms started when I was pregnant with my first child 14 years ago and they went away after the pregnancy, then came back more evidently with my second pregnancy and never went away.
     I start to feel "toxic" if I eat a meal with pasta or potatoes or even sandwiches. I get to where I can't even take a flight of stairs because my heart feels way too overworked. I am not overweight and don't smoke and feel very healthy when I am not eating carbs. I just haven't really been able to find any links between carbs and my symptoms that are tangible enough to take to a physician but I am at my wit's ends! When I have seen physicians, they have never had an answer. Have you even heard of such a thing? lauraso2000@yahoo.com
 
Jon's note: Have you had a BNP blood test? This sounds like PPCM to me with or without aggravation caused by diet, which could be coincidental - or not.


Yvette's November 6 reply to Scott Brown's November 5, 2004 - Hello, I'm glad you asked that. I have been diagnosed with cardiomyopathy (PPCM) since 1996. I'm doing pretty well. I worked until this April when I just could not anymore. That's okay. I am supposed to start Social Security this month also and that will help some. Since I've stopped working, my doctors have liked the progress I've made so far. I stopped looking at the life expectancy after the first year. finch32219@yahoo.com


Marty, November 6, 2004 - Hi everyone, First off, a heartfelt thank you to Jon. Your site has been a source of great information, cameraderie, and comfort to me over the past five months since I discovered it. As a computer guy, I thoroughly understand how much time and effort you've invested in this endeavor.
     Today I have a specific question on Inspra. With LBBB, DCM, an ejection fraction of 35% and at 43 years old, they say I am a class one patient, though I don't always feel great. They've worked me up to 25mg of Coreg twice a day and I also take Altace. The doc told me that at this point I'd be started on eplenerone or Inspra. Two days ago I had a follow-up appointment with the nurse practitioner in my heart failure clinic and she told me the docs on the team disagree on whether I should start Inspra at this time.
     The thinking is that most of the studies done on Inspra involved class 3 and 4 patients, thus the strong mortality improvement. In my case, they think that adding the drug now is not entirely indicated due to me being class one and basically asymptomatic. The NP told me that Inspra is a diuretic and will likely cause more fatigue and difficulty balancing potassium. So it's one of those trade-off situations, and in my opinion, adding days to my life trumps all the other factors. I'm not sure what to do, and they're essentially leaving it up to me whether to start the Inspra. I highly covet your advice. Thanks in advance, and God bless each of you! Marty. marty.culleton@rs.af.mil


Jon's November 6 reply to Marty's November 6, 2004 - Hi Marty, The side effect risk is slight and regular electrolyte testing should spot any problems with high potassium levels. This is testing you must have anyway if on an ACE inhibitor or diuretic, so that's no added trouble. Increased fatigue is unlikely in my opinion. I might ask to start at half dose for awhile, though, simply because I'd be adding another med to the mix. Please check to be certain you can afford it - this is not a cheap drug! Your EF qualifies you for a go at this med, in my opinion. Jon.


Marty J, November 8, 2004 - Hi, Does anyone know if Medicare will pay for a heart failure specialist? Marty J. zmljz@aol.com
 
Jon's note: Yes.


Oliver, November 8, 2004 - Hi everyone, This is my first post. This message board and entire site are amazing Jon, and have helped me a lot as I try to understand what's wrong with me. Thank you. That's why I'm posting: To see if I can tap any of your expertise. I have been experiencing unpleasant chest pains (prickling and shooting, worse on exercise) and a feeling of shortness of breath, fullness and palpitations for six months now. However, my EKG and Vo2max are normal.
     At first I was told it was just anxiety but now I have an enlarged heart. Over the past six months I've had it measured at (LVEDD) 51mm (March), 68mm (August 8), 57mm (August 20), 62mm (October 15). My other chambers are also borderline enlarged but my EF is normal at 55 to 65% at all readings and my valves are functioning normally plus all my blood tests are okay. My doctors think alcohol abuse or a virus could be causing it - I have been a heavy drinker for 10 years - but also think it may be "nothing" or "exercise induced." I do exercise regularly but am not an athlete by any stretch.
     I just had a BNP test done and it came in at only 4 pg/ml. My question to you all is, how can I possibly have an enlarged heart and all these symptoms with a normal EF and contractility, and normal BNP level? Have you heard of anything like this before and what should I be doing about it? I'm taking ACE inhibitors now but not beta-blockers. I have given up alcohol but am at a loss to know what this is and if it's reversible. I know you're not doctors but I'd love any thoughts! granfun101@yahoo.com


Jon's November 8 reply to Oliver's November 8, 2004 - Hi Oliver, The alcohol use has probably overstressed your heart to the point that it has enlarged to contract more forcefully (Starling curve). With proper treatment and no more alcohol, your heart should undergo reverse remodeling, hopefully before your EF and heart pressures suffer. If not, that BNP level will go up and your EF will go down.
     I would think a heart failure specialist would put you on a beta-blocker immediately to shrink your heart and reduce risk of acute heart failure episodes. I would strongly suggest you also go on a low sodium diet, and start taking CoQ10, L-carnitine and taurine at least in the short term. That is what I would do. Jon.


Clara D, November 8, 2004 - Hi everyone, This morning's paper reported news coming out of Sunday's American Heart Association conference regarding results of a study on the use of a fabric wrap for the heart. The study found that a mesh stocking pulled up over the wide bottom of a weak heart can help it pump better and even shrink back to a more normal size. According to the news report, the Baylor College of Medicine cardiologist who led the study said "There was a 75% overall improvement. It is a sort of breakthrough technology." If anyone on this board participated in the study I would be interested in learning about your experience. Thank you. Clara D. jdossett@nc.rr.com


Jon's November 8 reply to Clara D's November 8, 2004 - Hi everyone, Please don't be fooled by the media reporting on a "stocking" on this one. <g> This is a Dacron bag manufactured by Acorn Cardiovascular called the CorCap Cardiac Support Device. I've reported on this several times in mailings and on the surgery page. It requires major heart surgery and does not guarantee a good result by any means. The trial results can be seen on the surgery page. You can see a drawing of the device at http://pub.psbpr.com/acorn/MediaKit/November2004/images/CorCap_low.jpg. While this will help some patients, I don't see it as a true break through. Jon.


Cathy, November 8, 2004 - Hello, I have a question about "fluttering." My hubby has class 3 cardiomyopathy,with mild MVP. He sometimes has little fluttering sensations in his chest. Lately he has them whenever he exerts himself, like when brushing his teeth, getting into bed, or walking upstairs. Last night when he went to bed, he asked me to put my hand on his chest and it felt like he had a squirrel in there! I mean, his heart was flopping around so much I couldn't take his pulse. It settled down in a couple of minutes, but it unnerved us both. He doens't have pain, but he does complain of "heaviness" in his chest. Otherwise, he is able to work 2 to 3 mornings a week and is down to one long nap a day. He goes to see the cardiologist Thursday. Perhaps he can shed some light on this. georgecd@worldnet.att.net


Louisa, November 9, 2004 - Hi everyone, I'm very confused at the moment. I visited my cardiologist today and she said I no longer have heart failure. Here is a quick story of my experience: I was diagnosed with heart failure in late March and hospitalised for ten days in early April. My EF was 31%, my heart was enlarged to 63mm, and my BNP was 187. I had trouble breathing while walking and lying down. Tests showed that I had severe heart muscle damage. When I was discharged I was put on 40mg of Lasix and 40mg of Diovan. Two months later, I went down to 20mg of Lasix. In September, my EF was 62% and everything else was fine, except my heart muscle was still mildly damaged.
     Today, my cardiologist said my EF was again 62% and the damage to my heart had healed completely. She told me I no longer needed heart failure medication. However, I said I was very worried about going off my medication, so we compromised and she is keeping me on Diovan, which is for hypertension and heart failure. She said that as soon as I stop Diovan, I can safely fall pregnant. I still don't truly believe her. All this sounds too good to be true, so when I go home in December (I'm currently working in Tokyo), I will ask another cardiologist for a second opinion. She said she cannot explain how I recovered so quickly. She doesn't understand it herself, but the test results show I have a normal heart again.
     Has anyone else on the forum been told they have recovered? It's been just over seven months since I was diagnosed. Is this really possible? I don't want to get excited yet until I know for sure it's true. Regards, Louisa. louisawfchan@hotmail.com


Jon's November 9 reply to Louisa's November 9, 2004 - Hi Louisa, Readers here over the years have been told they are "cured" quite a few times. Some have not relapsed and are still doing well. Others went off their meds and relapsed - none of these to my knowledge ever recovered to their previous "cured" level again. Please note that there is a good reason why the official heart failure treatment guidelines call for anyone who has had heart failure to remain on an ACE inhibitor and a beta-blocker indefinitely!
     You may not be in heart failure. However, once you have had an acute CHF episode, you always "have" heart failure. See the note under heart stages in The Manual. That is from the American College of Cardiology and the American Heart Association. Most doctors who are not CHF specialists - even cardiologists - have trouble with this concept. You may be class one but you are always stage C.
     Can you go off your ARB and get pregnant safely? It is possible. However, without the support of the drug and with the extra physical stress of pregnancy, you are high-risk for going back into heart failure. I suggest you see a heart failure specialist who knows how to read treatment guidelines since your current one seems not to read them, and discuss it with him. He may be able to offer you a risk assessment based on his experience with similar patients.
     My own EF is almost normal now, although my heart is enlarged. Whether my heart size returns entirely to normal or not, I am not stopping my beta-blocker or my ACE inhibitor. As shown in my bio, I now take my diuretic every third day and have cut my Coreg dose in half, due to my improvement. However, please note that I am still on the two front line CHF meds, several supplements, a low sodium diet, and a structured exercise plan. All are critical in my opinion, to staying out of acute heart failure.
     See a heart failure specialist or two, and then make your decisions. Please be certain you have done your homework on heart failure course and treatments first. Jon.


Giorg, November 9, 2004 - Hello, I am experiencing tons of PVCs and bigeminy. My doc thinks they are caused mostly by anxiety but it is so difficult to fight anxiety, and PVCs raise my anxiety level. Could ablation be effective on PVCs? Is it dangerous on an enlarged heart? Do you know anyone who tried ablation for PVCs? giorgclunei@hotmail.com


Dave, November 9, 2004 - Good afternoon, I have been reading this site for a couple of years. I was first diagnosed 2-1/2 years ago with cardiomyopathy with an EF of 40%. At that point they started me on 5 mg lisinopril. Since my initial diagnosis, my next echo showed an EF of 30%. At that point, I started Coreg. I reached my target dose of 25 mg twice per day and after 6 weeks at target dose, my echo this past January showed an EF of 25 to 30%. I am now on Coreg at target dose, 10 mg lisinopril, 20 mg lipitor to get my one cholesterol below 70, and Lasix on occasions when needed. I also take a daily low-dose aspirin.
     I have been fortunate up to this point to be able to exercise as I want so I use the eliptical machine. Lately, I have been feeling really rundown and have had more difficulty breathing. I went for an echo today. I just read in the paper about a new cardiac wrap surgery using a mesh wrap to help improve the function of the heart. While it is approved in Europe, it has not yet been approved in the USA. Does anyone know of a test available? Countries that are using this wrap? Do you know an estimated time frame for approval in the United States? Thank you for your assistance. townley@verizon.net


Jon's November 9 reply to Dave's November 9, 2004 - Hi Dave, Out of curiosity, wouldn't you rather round out your meds therapy before submitting to major heart surgery for a device with no track record yet? You could try Inspra (eplerenone) or possibly digoxin (Lanoxin). You could also add an ARB to your ACE inhibitor. Also 6 weeks is not enough time to decide that Coreg has done all it is going to do! I suggest giving meds therapy a proper chance before jumping into surgery. How is your QRS interval? Has it been checked to see if a BiV pacemaker could help you? How about Celecade, which may be approved next year? Be sure to cover all the angles and options before considering cracking open your chest. ;-) Jon.


Ron, November 9, 2004 - Hi, I just got back from the cardiologist and he lowered my dose of Coreg from 12.5mg twice a day to 6.25 twice a day because my blood pressure was in the low 80s. I don't feel dizzy and the only symptom I have with my IDCM (EF of 15%) is fatigue. Am I losing the benefits of Coreg? My resting pulse rate is in the mid 50s. Thanks. ronr@kw.com
 
Jon's note: Why not switch to Toprol-XL, which does not lower blood pressure as much as Coreg?


Dave C, November 9, 2004 - Hello everyone, Driving to work 7 weeks ago I experienced acute SOB and drove directly to the emergency department of the Cleveland Clinic. Here is what I have experienced during the past 7 weeks: A 3-day hospital admission from the emergency room with chest CT using contrast, peripheral echos, and cardiac echocardiogram which discovered a 30% EF. My discharge diagnosis was CHF, s/p heart attack (news to me), CAD, hypertension, and hyperlipidemia.
     I had an appointment with a heart failure cardiologist after discharge, with a scheduled cath. The cath showed multivessel disease. October 11th I had a PET scan with persantine stress test conducted after cath. My heart's left side had good viability but the right side was not so good. October 21st, I had an angioplasty with Taxus Express 2 stent. I have an 11-15 appointment with the cardiologist to chart my future course.
     My current meds are 75mg Plavix, 6.25mg Coreg BID, 325mg aspirin, 10mg Lipitor, 10mg Lisinopril, 20mg Lasix as needed, and 1000mg acetaminophen as needed. My head is currently spinning like a BettleJuice character, as I was completely asymptomatic prior to 7 weeks ago. Any input would be appreciated. Thanks. lagrange_news@yahoo.com


Louisa, November 9, 2004 - Hi again, Since my last e-mail I have been doing a lot of research and it seems my cardiologist is right. My heart failure was caused by myocarditis and studies show that it is possible to make a quick full recovery with medication and rest. I am still going to get a second opinion though. The cardiologist believes that my tiredness is due to insomnia and the fact that I haven't exercised properly for so long. Louisa. louisawfchan@hotmail.com


Tony Myrick, November 9, 2004 - Hello, Just last week I saw Dr. Bourge at the University of Alabama at Birmingham. I was there for a follow-up after they found out three months ago my ejection fraction had dropped from 50% to 18%. I was at 50% last September before I went on a cruise with my wife. Last week I did a treadmill test and had pictures to see if I had blockages. Luckily I didn't have any. While I waited for the test, I met a guy in his forties who had the wrap done and his heart had shrunk and his ejection fraction went from 15% to 38%. He has had cardiomyopathy since 1992. He informed me that the FDA was about to approve the procedure.
     After my tests I met with Dr. Bourge. He told me my heart was still enlarged and my ejection fraction was maybe 20%. I told him about the guy I met earlier and he smiled and said I might be a candidate for the procedure once the FDA approves it. My point is Dr.Bourge is not the "media." He's director of new medicines and does most heart transplants at UAB. As he explained it, finding a heart for transplanting has higher odds than trying the wrap. I understand your stance on this procedure but techniques are improving every day.They believe they can install the bag from the side of chest with a smaller incision without cutting the breast bone as with most open heart operations. Thanks, Tony Myrick. ynotmyrick@yahoo.com


Jon's November 9 reply to Tony Myrick's November 9, 2004 - Hi Tony, I understand that a "keyhole" surgery to reduce chest trauma is planned, but keep in mind that it has not been done yet so it does not apply to anyone at this time. What is to be, is not yet. We must remember that as we study new options.
     I believe that if improvement can be had without an invasive procedure, it's better done that way. If an invasive procedure is necessary for improvement, the less invasive the better. If meds therapy can do the same job as major surgery, doesn't it stand to reason that meds therapy is a better choice? You can stop taking a med if problems arise but once you have a surgery like this one - smaller incision size or not - it takes another surgery to fix any problems. I realize this is a generalization but I'm stating a general philosophy that will have exceptions here and there.
     I read the study results from Acorn Cardiovascular. A lot of the CHFers improved (38% versus 27% of non-heart-wrap patients) but quite a number got worse as well. Thirty-seven percent of heart wrap patients got worse versus 45% of non-heart-wrap patients. Now, I am the first to proclaim that every patient a device helps is an outstanding step forward. However, these numbers show that talking to one patient (or one doctor - I don't care how impressive his credentials seem) cannot paint a whole picture in any situation.
     One point to this site is to bring new treatments to our attention. That's why I have reported on this heart wrap for 4 years! However, doctors, researchers, and the media often get waaaay too enthusiastic over treatments just because they are new. Many patients were put on Coreg when it was approved who were not good candidates for it. This is recognized now; it was largely over-enthusiasm on the part of both MDs and cardiologists trying to help patients without paying strict enough attention to actual trial results.
     The same thing happened with BiV pacers. Now we know that 1/3 of CHFers getting one don't improve and some actually get worse. Patient selection methods are being continuously revised to address this. Doctors are people and people love trendy stuff. I don't want readers here to fall victim to this kind of thinking, so when I see a downside, I report it along with the upside.
     I believe the Acorn CorCap device can benefit a number of heart failure patients, so I'm all for it. However, I think patient selection is always critical. So far, I have not seen any selection method or criteria for this device's use. A less traumatic surgery would be exremely valuable but it has not yet been developed as far as I know. Whether problems having this device around your heart may happen years after that heart returns to a more normal size and shape is unknown. These are the kinds of things to consider when looking at any treatment option. ;-) Jon.


Ann M, November 9, 2004 - Hi everyone, Thank you all for such encouraging news. When I posted about a week ago, I was in a panic, depressed and feeling like "what's the use in trying or caring if I have just a few years." I am now feeling much better and am able to sleep without waking up gasping. My Coreg is up to 2 doses of 12.5mg each day. Retirement isn't an option for me and it was so wonderful to hear that the old numbers for survival may be out of whack. I continue to work and I have been working in the yard, although a little less vigorously and paying attention to my body.
     I do have a question: How do you not drink fluids? I get sooo thirsty? Thank you all so much for encouragment. I can do this! annmac@blupac.com


Steve Kahn's November 9 reply to Dave's November 9, 2004 - Hi Dave, The heart wrap is the Acorn device. Our medical center (Cedars-Sinai in Los Angeles) participated in the clinical trial just presented. Plans are to make the device available sometime in the next year as part of a research protocol. The FDA approval will probably take some time. Your best chance of getting a device is to ask at one of the current trial sites. Acorn Cardiovascular has a list of US and foreign sites you can download. Steven Khan. gentlynapping@hotmail.com


Steve Kahn's November 9 reply to Louisa's November 9, 2004 - Hi Louisa, You need to be very careful about getting pregnant. As pointed out correctly by Jon, there is a strong chance your heart muscle is still abnormal. The ejection fraction is not that sensitive a test for abnormal heart function. In a number of patients, beta-blockers and ACE inhibitors or ARBs can get EF back to normal or near normal but the underlying heart tissue is still not normal and will deteriorate with stress.
     I have seen several patients whose well meaning doctors stopped their heart failure medications because their EF was normal, only to have them develop severe heart failure (pulmonary edema) several months or, in one case, 2 years later. The latter case was a patient who did fine till he developed a cold (sore throat, runny nose, etc) and then crashed.
     Bottom line - there is a significant possibility that pregnancy might cause a deterioration of your heart function again and cause you to develop heart failure. I would also recommend you check with a heart failure specialist in your area. gentlynapping@hotmail.com


Charles' November 10 reply to Ann M's November 9, 2004 - Hi Ann, This is one of the toughest ones for me, too. I freeze bottles of water to suck on during the day and eat lots of ice. It slows down the drinking. Hot liquids seem to go farther too. I drink decaf coffee and tea. Sometimes I suck on a lemon to stimulate my salivary glands. If I suspect I have overdone it with fluids, I take an extra diuretic (50mg torsemide) in the evening for safety. Better to be awakened with trips to the toidy than shortness of breath. I was hospitalized with pleural edema in January and it was the scariest thing that ever happened to me. b4dlens@yahoo.com
 
Jon's note: That's a big slug of diuretic for a precautionary measure.


Mary Anne, November 10, 2004 - Hello, I have felt great since going back on Toprol-XL from Coreg. My blood pressure is much better and I am having no side effects. Life brings surprises; I just found out I have an abdominal aortic aneurysm and I am seeing a vascular surgeon tomorrow. I think having surgery now when I'm in good condition makes sense to me, rather than waiting. The doctor treating my brother's aneurysm (just discovered) said it was hereditary and all his siblings should be tested. That's when I found out about mine as it is asymptomatic. mameredith@nauticom.net


Joy's November 10 reply to Cathy's November 8, 2004 - Hi Cathy, I am replying to your post regarding your husband's fluttering sensations in his chest together with the feeling of heaviness. The fluttering sensations and the fact that you couldn't palpate (feel) or detect "normal" pulse might indicate several possible arrhythmias. These might be PACs, PVCs or atrial-fib. There are of course other abnormal beats and electrical disturbances that could also produce these same symptoms.
     The fact that when these fluttering sensations occur he also has a feeling of heaviness in his chest is a definite concern. If he has not been aware of these sensations before and the heaviness, then he should seek a physician's advice quickly. You state he is planning on seeing his cardiologist Thursday. This is a perfect time to tell him of these occurances, however I would not delay seeking emergency treatment if these sensations and heaviness persist.
     For myself these fluttering sensations are almost a normalcy because I have a long history of PVCs. I too get the heaviness in my chest and my awareness of these symptoms is more pronounced when I am at rest, and especially when I get into bed. This doesn't mean these arrhythmias stop when I am active. When I am resting I am much more in tune with what my pump is doing or not doing. I hope the fluttering sensations and the heaviness are of a short duration and cease entirely because they can be frightening. Take care. Joy. pjkachel@aol.com


Tony Myrick's November 10 reply to Jon's November 9, 2004 - Hi Jon, Thanks for your reply about the wrap. It is easy to get caught up in the hype of something new. I was on Vioxx for a couple of years after the doctors knew of my cardiomyopathy. It did help with my shoulder and neck pain. Now it's off the market. I was a powerlifter from 1982 untill 1996. I didn't use steroids but was very strong. I bench pressed 405 pounds and squated 600 pounds. I was overtraining but didn't know it. I since have had 3 shoulder operations and neck surgery for two bad discs. I can hardly get out of bed from body pain and with the heart being weak, it drains me. I worked out at a gym with guys who did drugs and were much stronger than I but they don't have the joint pain that I have. I prided myself for being able to lift that amount of weight at a body weight of 260 pounds. I now weigh 220 couldn't do a pushup if my life depended on it. Looking back, I believed all the muscle magazines that said no pain, no gain, but they were giving workout routines of professional bodybuilders who used drugs and could recover faster than someone who didn't use drugs. In other words, they didn't tell the whole story, just like the makers of Vioxx. I still have my fingers crossed about the heart wrap if they do improve it. I will be careful before I fall for something that hasn't had all the kinks and flaws worked out. Thanks, Tony Myrick. ynotmyrick@yahoo.com


Louisa, November 10, 2004 - Hi Jon and Steve, Thank you for your comments. I will be going home to Sydney for a short break and will be seeing a cardiologist then. Unfortunately, as much as I love living in Tokyo, trying to find a cardiologist who speaks English well enough to explain things clearly to me is difficult. Jon, do you have a Paypal account for those of us who live abroad to make a donation? I really appreciate the wonderful work you do and the web site is a fantastic resource for many people. Louisa. louisawfchan@hotmail.com
 
Jon's note: I'm sorry but we had so many problems with PayPal that we gave up on them long ago.


Rick, November 10, 2004 - Hello everyone, I need some advice. I am in the final stages of heart failure and am being worked up for a transplant. I am having it done at The Jewish Hospital in Louisville, Kentucky. My problem is that I am 6 feet 6 inches tall and weight about 275 lbs. They want me down to 220 but I can't exercise and am on a low-sodium, low-fat diet. Can anyone give me advice on how to lose 60 lbs as fast as I can? I need the weight to come off before it is too late for the transplant. rbenfield@woh.rr.com


Greta, November 10, 2004 - Hi Jon, This message is for you. In our state-wide newspaper today was an ad for Clinical Research Study for heart failure. It consists of a 24-week study underway at a clinic in Little Rock, Arkansas and I'm sure at various other clinics scattered across the USA. You have to meet certain criteria to be eligible (I do not qualify). Out of curiosity I called. The trial involves the intravenous use of a new IV medicine called Natrecor. I was wonder if you have heard anything about this? I'm not a great advocate of anything so new it has no track record, but I figure if anybody knows anything about this med, you will. What say you? Blessings, Greta. gjohnson@arkansas.net
 
Jon's note: See www.chfpatients.com/inotropes.htm.


Sherry's November 11 reply to Jon's November 6, 2004 - Hi Jon, Yes, I have had 2 BNP tests. The first result was 781 and the more recent result was 69. My feet and legs never swell with fluid - it's always my abdomen. It has been 6 months since my surgery and my heart failure episode but I still feel awful. My doctor said I was cured, which I cannot believe since he just raised my Coreg dose. He's supposed to be top-notch from Cleveland but I don't care for him. He's one of those docs who thinks that since I am a woman, I don't know what I am feeling. I was having increased chest pain and he started me on Imdur after I fought with hm and it does help. I am afraid it may mask something serious. I would appreciate any input. Bonohay@hotmail.com


Jon's November 11 reply to Sherry's November 11, 2004 - Hi Sherry, Since even a BNP result of 69 is much higher than someone without heart failure, a doctor who says you are "all better" is not paying attention! I recommend a second opinion, from a heart failure specialist not affiliated with this doctor. Like I say at www.chfpatients.com/faq/doc.htm#doc_1, "You're not just facing a question of 'Do I need a specialist?' You're facing, 'Which specialist is right for me?' " I don't care how impressive a doctor's credentials seem, if he's not on the ball or if he's not right for you, you need a different doctor, period. I have not swelled in my feet or legs since my diagnosis; I also always swell in my abdomen and my face and hands. A cardiologist who can't grasp this is not going to be my cardiologist and I suggest you make sure he isn't yours either. ;-) Jon.


Donald, November 11, 2004 - Hi everyone, As a long time reader I have a question. I am 76 years old, have CHF, COPD, knee replacement, and low kidney function. I have back pain so I walk very little. My doctor wants me to take Vicodin 3 times a day but I am afraid of addicton. All my doctors are having me come back in a year as I am stable. My internist checks my blood every 3 months. I am feeling that being on Medicare and being given Vicodin is a "forget you" - no more treatment sort of situation. I have had good care for twenty years of heart care. I had a heart attack at age 36 so I am lucky I am stable, and count my blessings. jdhudson01@hotmail.com


Laura, November 11, 2004 - Hello all, I just had some other information and questions. I am going to a physician today but I was wondering what your thoughts were on thyroid disease and its effects on the heart. I was treated for hyperthyroidism for over 10 years. I also wonder if the added fluid retention from ingesting carbs is just too much for me to handle. The question I guess that remains is why is it too much for me to handle. I also have always had PVCs and chest pain but attributed that to my thyroid. I no longer take anything for thyroid, everything checks out fine there except for elevated uptake. You would think that with these symptoms they would have figured something out by now. Thanks again for all your help. lauraso2000@yahoo.com


Jon's November 11 reply to Laura's November 11, 2004 - Hi Laura, Hyperthyroidism can cause heart failure, so it definitely has effects on the heart. I don't know about carbs. The Atkins Eating books do say high carb intake can cause fluid retention. To a small degree, I have found that to be true for me personally but I haven't seen anything about it in the medical literature. Be sure to stick to a low sodium diet to help. Staying under 1500mg sodium intake daily can really make a difference. Jon.


Pen, November 11, 2004 - Hello, This more or less is a question for anyone. I have cardiomyopathy, mitral valve regurgitation, and heart failure. I am very well compensated. The other night I had a very stressful situation that concerned my family that upset me a lot! Well, I honestly thought I was going into heart failure - I couldn't breathe, was coughing and couldn't get my breath very easily. I had a heaviness in the chest but ever since the next day I have been fine, a little tired but fine. Could this have been CHF? Does getting upset bring that on? It really scared me. I would appreciate any replies. I don't see the doctor till next month. Blessings, Pen. pmp1658@hotmail.com


Jon's November 11 reply to Pen's November 11, 2004 - Hi Pen, Do you take Coreg? Coreg blocks natural stress hormones from reaching their intended destinations in the body, so they circulate for quite awhile before "disintegrating." I find that this causes a really nasty physical sensation similar to what you describe when I get emotionally stressed out. It usually takes a couple of hours for it to go away if I lie down and take it easy - longer if I don't take it easy. Jon.


Scott, November 11, 2004 - Hello all, My mother Mary used to be a regular on this board, I believe. She lived in Port Orange, Florida and was originally from Cincinnati. Her heart failure had gotten worse over the last year or so, to the point where her cardiologist advised that she have a biventricular pacemaker/ICD implanted. It was to help her heart rhythm.
     Unfortunately, the strain of the surgery and the fact that she was evacuated due to a couple of hurricanes wore on her. She was discharged from the hospital on Octoberber 18th. The doctor said she was looking really good. Well, the next day she starts feeling really bad so we called 911 and got her to the hospital only to have her die from a pulmonary embolism - that's what her cardiologist thinks after looking at her records.
     It is very ironic that it wasn't her CHF that killed her but rather a pulmonary embolism. She was on Coumadin to thin her blood because she had been in atrial fibrilation. It didn't help, obviously. I was wondering if anyone has heard of a CHF patient dying in this manner. I'm really angry that she ever had that surgery. Who knows though, her ejection fraction was 20% and she had been sick a lot. It is just still very, very sad for me. Any thoughts? dscottcam@aol.com


Beckie, November 11, 2004 - Hi, I was diagnosed with cardiomyopathy and an EF of 20% with moderate mitral valve regurgitation and mild tricuspid regurgitation one year ago via echo, chest x-ray and EKG. I am now on Coreg at 25mg twice a day, Altace at 20mg, and Aldactatone at 25mg. I was also on digoxin. My blood pressure now runs about 98/50 with my pulse at 75 to 90 beats per minute.
     I had chest pain last weekend, ended up at the hospital, and had a catheterization. Lab results showed super high digoxin level and unbelievably, the cath results are supposedly all normal with an EF of 50 to 60%.. I found some of the results on your site and they look normal.
     My question is that I don't feel super and would like to start Coreg when I go to the doctor the 22nd. What is your advice on this? I know you are not a doctor but respect your knowledge. What do you think of these results? God bless, Beckie. comerhanks@comcast.net
 
Jon's note: Do you know what caused your heart failure?


Margaret D's November 12 reply to Scott's November 11, 2004 - Hi Scott, I'm so sorry about the loss of your mother. I was thinking that she had probably been taken off the Coumadin for maybe 5 days before the surgery to prevent excessive bleeding during the operation. It's possible that it had not been started back by the time she was discharged. The risk for PE would be higher following any surgery for any kind of patient, especially if there is any resultant degree of immobility post-op. I'm sure the doctors weighed the risks beforehand and decided the implant was the best course of action for her. Again, I am sorry you had to go through this. mdavis10@tampabay.rr.com


Pen's November 12 reply to Jon's November 11, 2004 - Hello Jon, Yes, I am on Coreg and lisonpril. Thanks for the info. It is very helpful! God bless. Pen. pmp1658@hotmail.com


Jon, November 12, 2004 - Hi everyone, I am writing a set of 6 new pages detailing how to actually go about exercising with heart failure step-by-step. However, my scanner won't work with Windows XP Pro, which I now use. If anyone lives in Kansas City, Missouri, and has a decent scanner, I'd love to scan a bunch of photos in the near future. You'd need a CD burner as well for me to put the scanned files on CD to bring home. The photos will be to show equipment and how to properly do the exercises. Donations have been slim enough lately that this little old company can't currently afford a new scanner. Thanks, Jon.


Sandy's November 12 reply to Pen's November 11, 2004 - Hi Pen, I say yes because it has been happening to me. My life has a lot of stress in it right now and when I get stressed, I get so tired and have a hard time breathing. It might last for a few days. I try really hard to not let anyone upset me but sometimes it is not an easy thing to do. I'm learing to walk away from a stressful situation. People sometimes just don't know or care what you may be going through. Good luck to you! bleuskiiisgrl@yahoo.com


Cathy's November 13 reply to Scott's November 11, 2004 - Hi Scott, I am so sorry. No matter what your age, it is never easy to lose your mother. Unfortunately, anyone who experiences a period of immobility can suffer PE. My dad threw a clot to the lung after a 5-hour car ride. Those with arrhythmias like a-fib are especially prone to it because their hearts don't beat normally. I'm certain your mother's doctor expected the new pacemaker to help. I'm so sorry for your tragic loss. georgecd@worldnet.att.net


Jamie, November 15, 2004 - Hello, When I was first out of the hospital, the researchers and my doctor suggested the Acorn device might benefit me. We had a couple of discussions about it. When they found out I was just starting on the CHF journey, they didn't call back. Later I found out they shouldn't have contacted me until 6 months had passed. Later they contacted me again and scheduled an echocardiogram. The medicine had worked so well that I didn't need it anymore, plus the information my sister was able to get from the web sites open to doctors were such that I didn't think the improvements were enough for such a surgery. This is all an experiment. They don't know what will happen a few years down the line. Please be careful and read the data before submitting to this. giantheart@sprintmail.com


Sandy H, November 15, 2004 - Hi everyone, I got a letter from the Social Security office today saying they are going to set up a hearing date for me. Does anyone know how long after that, you are either denied or approved? I live in the state of Missouri. shallacy@sofnet.com


Nancy S' November 15 reply to Scott's November 11, 2004 - Hi Scott, I'm very sorry you lost your mom. I lost mine in March so I know how it hurts. I'm a reciepient of a biventricular pacemaker and am one of the lucky ones that it helped. I was only 50 when I had it placed so that may have made a difference, I don't know. I pray that you will be comforted by our Lord Jesus Christ. He's been a great comfort to me and knowing that my mama is with him is all that gets me through. Nancy. ns1@alltel.net


Oliver, November 15, 2004 - Hello all, I wonder if anyone had any thoughts about the recent news on the heart failure drugs that they approved for African-Americans? Might they have a more general use for everyone? If so, for what type of heart failure? Do they replace or compliment the other standard medications? Also, what about the recent news that vitamin E may actually be bad for the heart rather than good? It seems to be a busy week for CHF news. granfun101@yahoo.com


Jon's November 15 reply to Oliver's November 15, 2004 - Hi Oliver, No. The hydralazine-nitrate combination shown to benefit African-Americans is only suggested for other races when they cannot for some reason take an ACE inhibitor. In white people, an ACE inhibitor gives superior results. In fact, the "new" drug combination was the first line treatment for everyone before ACE inhibitors came along. In African-Americans it is a replacement, not an addition.
     I haven't read all the vitamin E study although I have downloaded it. However, I did note that this was a meta-analysis, meaning it was not a trial. It was a statistical rehash of lots of other trials, trying to pull information out of them that they were not designed to give. I don't have a lot of faith in this kind of study in general but will let you know what I think of this one when I get a chance to read it all. Jon.


David, November 15, 2004 - Hello, I have been told I have diastolic dysfunction, a form of heart failure. Basically, the heart muscle has become stiff and does not relax properly in the diastolic phase of the beat. I'm on Coreg at 12.5 mg, Lasix, the usual stuff. Problems include plural effusion, fluid in lungs, and shortness of breath. I had pronounced problems for 10 months with a long history of atherosclerosis.
     Would a pacemaker work for me? Perhaps a biventicular pacemaker? I read about it in Dr. Silver's book on heart failure. I'd appreciate your thoughts. mclean@hsnp.com
 
Jon's note: If you fit the patient selection criteria, your odds are as good for improvement as someone with systolic dysfunction. BiV pacers have been shown to improve DHF.


Crystal, November 15, 2004 - Hi everybody, I was recently taken off my spironolactone (Aldactone), which I've been taking for a little over a year. Since then I keep getting dizzy even while sitting and my blood pressure has been higher than usual (usually 90s/60s but now 130s/80s). My last visit showed my EF at 35% and that is when they decided to take me off it. The doc said that I am not severe enough anymore and saw no reason to keep me on it.
     Has anyone else been taken off it and had symptoms like this? I will be calling my doc but if anyone has any insight until then, I'd appreciate it. As always, thanks Jon, for this site. You are invaluable! schramuno@sssnet.com


Richard, November 15, 2004 - Hi Jon, You have an awesome site. I have several questions about DCM with CHF going around in my head. My wife has been diagnosed with DCM with CHF, which was misdiagnosed as a chest infection. With earlier detection, would it have been better for her in terms of her heart functionality and the state she is in now? In your experience, who is the person to have survived the longest having DCM with CHF? My wife has improved dramatically with her course of enalapril, Coreg and furosemide, praise God! Will losing weight improve her chances further? She has been asked to increase her dose from 3.25mg to 6.25mg of Coreg. Is that a bad sign that her heart is not doing well? Apparently the norm is to start on a small dose and increase it slowly. Why is this? Is the tiredness to do with the drugs or heart not functioning? With more Coreg, will that mean more tiredness? I think I've asked all these question I want to ask. God bless you heaps. Thanks for the site. Richard. indyj1910@hotmail.com


Jon's November 15 reply to Richard's November 15, 2004 - Hello Richard, Earlier diagnosis helps, but most of us were misdiagnosed and we just have to get over it. I have no idea who has lived longest with heart failure. I am past the 10-year mark. If she is overweight, losing extra body fat will definitely help. I think the Coreg page and its links cover your Coreg questions. Target dose is explained at www.chfpatients.com/faq/target_dose.htm. Usually, as your body gets used to higher Coreg doses, fatigue improves. For now, it is probably partly meds and partly heart failure. I hope it helps. Jon.


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

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