The paperwork never ends The Archives
July 16-31, 2005 Archive Index CHFpatients.com

Jon's 7-16 reply to Pat L's 7-15     I have asked FDA, my Toprol-XL experience
 
Brenda K's 7-16 reply to Jon's 7-15     edema questions
 
Jon's 7-16 reply to Brenda K's 7-16     edema
 
Brenda K's 7-16 reply to Roger G's 7-15     will talk with my doc
 
Tony M 7-16     update, upcoming surgery, prayer request
 
Ellen B 7-16     episodes of unconsciousness
 
Jon's 7-16 reply to Ellen B's 7-16     episodes of unconsciousness
 
Mary M 7-18     amiodarone withdrawal, better EF but feel worse
 
Jon's 7-18 reply to Mary M's 7-18     better EF but feel worse, questions
 
Sandy N's 7-18 reply to Tony M's 7-16     sending prayers for you
 
Evelyn 7-18     does anyone get numbness & tingling, etc?
 
Gloria S 7-18     ICD site infected years after implant - any ideas?
 
Dale 7-18     severe liver trouble - could a-fib be cause?
 
Roger G's 7-19 reply to Evelyn's 7-18     numbness, tingling, needing to keep moving
 
Harry L's 7-19 reply to Peter S' 7-10     and to Roger - device experience
 
Mary M's 7-19 reply to Jon's 7-18     more info on situation
 
Dave C's 7-19 reply to Evelyn's 7-18     numbness, tingling
 
Susan T 7-19     seek heart recipient loved ones/caregivers
 
Kirk V 7-19     intro, have some questions
 
Jon's 7-19 reply to Kirk V's 7-19     mortality statistics
 
MaryAnn H 7-20     any ideas?
 
Lauren A 7-20     is inflammation part of heart failure?
 
Jon's 7-20 reply to Lauren A's 7-20     inflammation as part of heart failure
 
Roger G's 7-20 reply to Kirk V's 7-19     mortality statistics, Coreg
 
Betty L's 7-20 reply to Mary M's 7-19     amiodarone experience, sotalol now
 
Rosemary H 7-20     does anyone else get this "head rush"?
 
Craig C 7-20     has anyone else had this skin problem?
 
Barb N's 7-20 reply to Kirk V's 7-19     diabetic medications and heart failure
 
Gary W 7-22     seek experiences with CHF and a-fib
 
Yvette's 7-22 reply to Kirk V's 7-19     longevity, exercise & more
 
Rob P 7-22     seek ICD experiences
 
Lowell P 7-22     leg fatigue, slow heart rate
 
Susan D's 7-22 reply to Craig's 7-20     similar experience
 
Susan L's 7-22 reply to Dave C's 7-19     tingling and numbness experience
 
Sky T 7-22     seek test numbers information
 
Marilyn M's 7-24 reply to Yvette's 7-22     coping with heart problems
 
Zaidi H 7-24     seeking options
 
Tony M's 7-24 reply to Craig C's 7-20     skin problems, pain and neck surgery
 
Lowell P's 7-24 reply to Jon's 7-22     added ARB, test result question
 
Stephanie W 7-24     educate yourself, be your own advocate
 
Roger G 7-24     important update on Guidant ICD problems
 
Monique B 7-24     really need some information
 
Steven P 7-25     seek info on heart failure classifications
 
Marilyn M's 7-25 reply Rob P's 7-22     ICD experience and more
 
Jon 7-25     FDA reply about generic Toprol-XL
 
Michelle B 7-25     seek heart recipients or their parents, please
 
Bill H's 7-25 reply to Gary W's 7-22     my experience
 
Chuck F's 7-25 reply to Monique B's 7-24     VA care and more
 
Roger G's 7-25 reply to Lowell P's 7-22     ARB side effects
 
Roger G's 7-25 reply to Monique B's 7-24     getting answers and information
 
Cheryl C 7-25     upper body fatigue, Coreg question
 
Roger G's 7-26 reply to Cheryl C's 7-25     adjusting to Coreg
 
Mary Anne M's 7-26 reply to Mary M's 7-18     amiodarone experience
 
Tony M 7-26     to Sandy N and wrist cath questions
 
Rita C 7-26     seek end-stage heart failure experiences
 
Roger G 7-26     another stem cell trial to begin
 
Mary M's 7-27 reply to Mary Anne M's 7-26     amiodarone experience
 
Karen K's 7-27 reply to Rita's 7-26     hospice care?
 
Patty L 7-27     cancer, CHF, meds - anyone else?
 
Mary Anne M's 7-27 reply to Roger G's 7-26     seek stem cell trial info
 
Giorg's 7-27 reply to Roger G's 7-26     seek stem cell trial info
 
Rene A 7-27     does CHF leave you feeling cold a lot?
 
Roger G 7-27     Social Security Disability changes
 
Jimmie R 7-30     intro, seek supplements information
 
Susan D's 7-30 reply to Rene A's 7-27     being cold with heart failure
 
Roger H's 7-30 reply to Rene A's 7-27     getting cold with heart failure
 
Norma L's 7-30 reply to Rene A's 7-27     getting cold with heart failure
 
Roger G 7-30     disability changes information
 
Anita S' 7-30 reply to Rita C's 7-26     end-stage heart failure experience
 
Tom S' 7-30 reply to Rita C's 7-26     end stage heart failure
 
Joy K's 7-30 reply to Rita C's 7-26     hospice and end-stage heart failure
 
Jon 7-30     hospice and end-stage heart failure
 
Ann M 7-30     seeming blood sugar drop - please help
 
Chris L 7-30     seek biventricular pacemaker experiences
 
Cheryl C 7-30     update, Coreg
 
Yvett'e 7-30 reply to Marilyn M's 7-24     slowing down
 


Jon's July 16 reply to Pat L's July 15, 2005 - Hi Pat, Not as far as I know, but I e-mailed the FDA today and will let you know what they tell me. Toprol-XL is incredibly cheaper than Coreg, I can tell you.
     After dickering around discussing possibilities with my own CHF doc, we decided that I would just switch from target dose of Coreg straight to full target dose of Toprol-XL. Having done so, I can report that I experienced no problems at all. I am at 200mg Toprol-XL once daily now. Jon.


Brenda K's July 16 reply to Jon's July 15, 2005 - Hi Jon, Thanks for the info and encouragement. I'll definitely check out the web site. Another question:When retaining fluid, at what point do you decide to go to the hospital? I really don't know how to deal with this and I am getting pretty puffy. My face, stomach, hands and feet are all looking and feeling swollen. It's not like some of the pictures I have seen on CHF web sites, but it is enough that I am not sure what to do next. I don't see the new doc until Tuesday and am not sure what to do. I would appreciate any suggestions. Thanks again, I really needed someone to talk to who knows about this stuff. brendakinne@comcast.net


Jon's July 16 reply to Brenda K's July 16, 2005 - Hi Brenda, It depends on how bad your edema is. Until you establish a low sodium diet and start proper drug therapy, including a diuretic and prescription slow-release potassium supplement, it's hard to say at what point to go to the emergency room for diuretic. If you have any trouble breathing then go to the hospital emergency room for some diuretic because your edema has probably gotten to the point you have congested lungs.
     If you have visible edema, it's sort of silly for your doc to insist you can't possibly have heart failure. Jon.


Brenda K's July 16 reply to Roger G's July 15, 2005 - Hi Roger, My doc did say I don't have diastolic dysfunction or hypertrophic cardiomyopathy. You may be right about him making a clear distinction about CHF. I will explore this further if I talk to him again. I will make the decision to see him again or not after I see the new CHF specialist on Tuesday. Thanks for the quick reply. brendakinne@comcast.net


Tony M, July 16, 2005 - Hello everyone, I read this post and like my own health I have seen the web site have its ups and downs. I have gotten my EF up to 37% or so. It was in the 20s in the fall but Tuesday I am having another neck fusion surgery. I had one this time a year ago on 4 vertabrae where they put in plates and screws with donor bone. The surgery was not a success and the pain made my EF drop from the low 50s to the mid-20s because my blood pressure was so high from the pain. I kept calling the pain clinic and the neuro doc; they seemed to think I wanted my pills for pleasure I guess. After the fourth month out of surgery, Dr. Bourge found out my EF had go down and he wasn't pleased with my doctors in Montgomery. At the same time, they thought I had a pain pill problem I went on stronger drugs (methadone) and the pain is better now and my blood pressure is level.
     Along with the donor bones not working, I now have another disc that has blown out and I will have all my discs fused except the top of c1 and the bottom of c7. I hope I can get this fixed with this surgery and go back to the the EF numbers I had last year before I got sick. I am now class 3 according to my doctors so I want to get the numbers that put me back at class 2. If you can spare a prayer, I will be forever grateful. Thanks, Tony. ynotmyrick@yahoo.com


Ellen B, July 16, 2005 - Hello everybody, My mom was diagnosed about 7 years ago with congestive heart failure. Her prognosis was 6 months to two years. Amazingly, she is still living a good quality life. Recently, my dad has reported that he has found her unconcious "a few times." Since I am dealing with the loss of another family member, I feel that they are making this seem like less of a big deal than it is. If anyone has information, please share it. Does this mean that her CHF has reached another critical stage like I think it does? fourberens@netzero.com


Jon's July 16 reply to Ellen B's July 16, 2005 - Hi Ellen, Not necessarily as relates to her actual daily heart pumping strength. However, it does mean that she needs immediate examination by a cardiologist specially trained to diagnose and treat irregular heart rhythms, called an electrophysiologist. Any fainting spells or unconsciousness needs to have the cause discovered as soon as possible to prevent a potentially fatal episode, whether or not it's related to her heart failure. Jon.


Mary M, July 18, 2005 - Hi, I am a caregiver for my significant other. He was diagnosed in 2003 with DCM. His EF at that time was 10%. He is now up to 40% based on a recent MUGA. Okay, that being said, he feels worse now then ever. Two weeks ago he began having a whole list of symptoms that weren't there previously, including profuse sweating, lightheadedness, extreme fatigue, intense sense of taste and smell, lack of appetite and weight loss, just a general terrible feeling.
     In the last two weeks he has had an echo, muga, blood work, CT scan, colonoscopy, upper and lower GI, name it and I think they did it - all came back normal and his EF was better then ever. His meds were amiodarone at 200mg daily, Coreg at 25mg twice daily and digoxin at 0.125mg daily.
     I searched the Internet and found out that amiodarone can cause all of these symptoms plus more. He has been on it since diagnosis. He called his cardiologist and went to see her Friday with his list of symptoms in hand. She already knew what the problem might be, but was hesitant to take him off the amiodarone.
     I'm very angry with her. How much sicker was she going to allow him to get? Anyway, it has been 3 days now since he stopped the drug. He is still not much better but I read where amiodarone stays in your body a long time. My question now is, I'm worried about his heart rhythm problems. She didn't give him a substitute drug and won't for another month, then she told him there is a new clinical trial drug currently showing no side effects, but he didn't get the name. I know with all his tests coming back great I should be happy, but seeing him struggle to eat and having zero energy worries me so. Thanks, Mary. snoopy2dane@hotmail.com


Jon's July 18 reply to Mary M's July 18, 2005 - Hi Mary, He's lucky to have someone who not only worries, but who also digs up information and applies it to help him. Amiodarone does take many months to leave the system. What type arrhythmia does he have? Has he ever had fainting spells or cardiac arrest? Are there any members of his family who have had these problems?
     I certainly sympathize with the whole "better EF - feel worse" situation since I have a huge dose of it myself. In my case, I am coming to believe I have a systemic inflammation problem. I don't know why it took me so long to figure this one out since chronic inflammation is a large part of the medical heart failure "model." I have an appointment with my regular doc to talk it over before taking it to my cardiologist (they're neighbors so what goes to one always makes it to the other <g>). Jon.


Sandy N's July 18 reply to Tony M's July 16, 2005 - Hi Tony, I'll be sending all sorts of prayers and good vibes your way. I've been through back surgery and have screws and rods in my lower back, and know what you're going through! Wishing you a speedy recovery. Good luck! bleuskiiisgrl@yahoo.com


Evelyn, July 18, 2005 - Hello everyone, I have a question but first I'll tell a short update version of my condition. I was diagnosed with DCM and CHF in 2003 with an EF of 17%. With the help of Coreg at 25mg twice a day, Altace at 10mg a day, Aldactone at 25mg twice aday, Lasix at 80mg, and potassium twice a day, my EF in February measured around 40% so most days I'm okay I do still have bad days.
     My question is this: Is poor circulation in my arms and legs from my heart problems? I wake up in the morning feeling numb and tingly and can't hold a position for very long - not sitting, standing, combing my hair, typing, writing, and most importantly lying down. It just always feels like I gotta keep moving or my body parts are falling asleep. Does anyone else have this problem? Ev. eveysue@hotmail.com


Gloria S, July 18, 2005 - Hello All, I would like to throw this out here to see if any of you have had this happen to you or have any input on it. My dad had a Medtronic ICD implanted in July of 2003. On Wednesday he started having pain in the area of his ICD. Then the area got swollen, hot and discolored. By Friday he went to the VA hospital and now he is admitted with a severe infection. He did not injure it and he can't remembering anything happening out of the ordinary. The doctors can't figure out why it waited this long to get infected. At the moment he is on IV antibotics but it looks as if they are going to have to remove the ICD and implant it on the other side. God bless, Gloria. jadastarr2003@yahoo.com


Dale, July 18, 2005 - Hi all, My dad has been experiencing high liver pressure which resembles cirrhosis. Could his a-fib cause the pressure in his liver? He has many periods of a-fib throughout the day, and he is not on any kind of anti-arrythmia drugs anymore. He has had CHF since at least 2001. Basically, the liver problem is incapacitating him to the point he can't think or talk. Is this a typical problem with CHF? homecapitaldale@hotmail.com


Roger G's July 19 reply to Evelyn's July 18, 2005 - Hi Evelyn, I can't say that the numbness in the limbs is due to DCM but I do have similar symptoms of numbness and needing to move about. Also, standing for more than a few minutes can become a problem in the legs. I have seen the doctor and he kind of shrugs it off as part of the DCM and side effects of the meds. I tend to agree with him in my situation. If it were one particular limb or one side of my body I would be a little more concerned that I was having a stoke but for me it is system wide. Here are the warning signs of stroke just in case you may be concerned - www.americanheart.org/presenter.jhtml?identifier=4742. rogergthree@earthlink.net


Harry L's July 19 reply to Peter S' July 10, 2005 - Hi Peter (and Roger), I just had an "Intrinsic" model implanted last Thursday the 14th. I have an EF between 30 and 35%, PVD and am prone to CHF. We had talked about this procedure ever since my single bypass 2-1/2years ago. My health insurance covered the total cost even though I had to have an EP test first. The cardiologist and cardiac disease specialist both recommended the procedure due to my age (56) and other considerations. It is a prime preventive step against sudden cardiac death, and since I am susceptible to VT and VF in the left side due to heart muscle damage, it is the only choice I have other than transplanting. My doctors do also have me on the latest and greatest drug therapies and they seem to help. I hope this helps a little. Harry. eabinc@mindspring.com


Mary M's July 19 reply to Jon's July 18, 2005 - Hi Jon and everyone, First, thanks Jon for such an informative site. There is none other like it. I know you are in the KC area and Bob and I are in Overland Park, Kansas. His doctors are on staff at Shawnee Mission Med Center, good doctors, but I feel like they dropped the ball on this one. Knowing it could be the amiodarone and yet hesitating to stop it still makes me angry. However this is day 4 to 5 without the pill and he is feeling much better. He has a ventricular arrhythmia and he also has an ICD which has never fired, nor do I want it to. I do understand why they were hesitant to stop amiodarone but Bob doesn't weigh 120 pounds wet and since losing ten pounds he looks bad. I am sure there is another drug that will work. She (doctor) mentioned a clinical trial drug with few side effects. We are just waiting for the amiodarone to get out of his system, I wonder if it is necessary to wait that long. Good question for me to ask at his next doctor appointment. Again, thanks Jon, for this great site. Mary. snoopy2dane@hotmail.com
 
Jon's note: If amiodarone were a new drug, there is absolutely zero chance the FDA would approve it for anything.


Dave C's July 19 reply to Evelyn's July 18, 2005 - Hi Evelyn, I also get the numbness, particularly if I sleep with my arms folded at the elbows, and then my hands go numb. I am told one cause is low blood pressure. I have CHF, EF of 20%, and I am on Coreg at 25mg, Altace, spironolactone, digoxin, and Lasix, in addition to living with a biventricular pacemaker/ICD. I wonder if others have the numbness thing also? My best. dmconnelly@gmail.com
 
Jon's note: It's so common it's listed in The Manual under things to expect.


Susan T, July 19, 2005 - Hi all, I would like to hear from anyone that is a caregiver to a heart transplant recipient. My husband is age 37. He had a heart attack at age 34 and he then lived on an LVAD for 11 months. He got a donor heart in 2003 and it has been a rollercoaster ride for both us. Of course, there are other medical/mental problems ongoing. I just would like to hear from someone that is in the same place as me. Thanks, Jon, for this web site. sktheboss@mei.net


Kirk V, July 19, 2005 - Hi everybody, I was recently diagnosed with dilated cardiomyopathy in February after a brief stay in the hospital because my right my arm from my fingers to my forearm was turning blue and was cold to the touch. I went to the ER and they admitted me, then did a stress test which showed I had two blockages so they ordered an angiogram (cath) which showed no blockages but they said I have dilated cardiomyopathy and that my EF is 30 to 35%.
     Now I have a cardiologist and he tells me that sometimes the cardiomyopathy clears itself up but all the books and Internet sites I have visited do not say anything about a cure. In fact at heartcenteronline they state that 50% of the patients with dilated cardiomyopathy survive 5 years. Right now I am on Coreg at 3.125mg and my cardiologist is increasing the dose to 6mg, an aspirin once a day at 325mg and Zocor at 40mg, and Vasotec at 5mg twice a day. I also take cymbalta for depression and Actos at 15mg, and metformin at 1000mg twice a day and insulin at 30 units twice a day and novolog insulin at 5 units twice a day.
     I have not been very active since my diagnosis. I have to take it really slow because I get nausea and also have periods of vomiting and have my lost my appetite and sleep a lot. There are times when I am at rest that I have been awakened by either my arm or my leg on my right side thrusting itself out for no reason and I have never had that happen before. Could that be the RLS I have been reading about in the posts?
     I really don't know much about the cardiomyopathy so any help would be greatly appreciated. Take care and God bless. Thanks for listening. Kirk. niceguytulsa2006@yahoo.com


Jon's July 19 reply to Kirk V's July 19, 2005 - Hi Kirk, Ignore that 5-year statistic. It is so outdated, they should be ashamed to have it on their sites. More recent numbers are much better. For reasons why you should ignore that tired old statistic, see chfpatients.com/archives/archives_search.htm#mortality_testing_and_numbers. Jon.


MaryAnn H, July 20, 2005 - Hello, When my son was first diagnosed with cardiomyopathy he had a holter monitor done and was found to have 24,000 PVCs. After treatment with Coreg and Altace, after awhile they dropped to 15,000 a day. As a trial, Cleveland Clinic doctors put him on amiodarone to see if that would help and after three months 1200 a day and left ventricle size down to normal at 5.5 cm. He just had another holter done after 6 months on amiodarone and it showed a jump to 2700 PVCs and left ventricular size up to 5.7 cm. I know that it isn't a big jump but am wondering if this is the start of something. Any info would be appreciated. mahall1958@hotmail.com


Lauren A, July 20, 2005 - Hi all, Has anyone read anything on a possible connection between CHF and inflammation? I recently read an article in a special Newseek Health addition, that mentioned research into a connection between chronic inflammaion and heart failure. I am just wondering if anyone else has read anything similar. larnsperger@hotmail.com


Jon's July 20 reply to Lauren A's July 20, 2005 - Hi Lauren, Inflammation is well established as a part of heart failure. Which comes first - heart failure or inflammation - is unknown in most cases. Immune modulation therapy is in its first phase 3 trial while other anti-inflammatory treatments for CHF have not made the grade. That's why you don't see them here except in the old sections. The problem is that general anti-inflammatories make heart failure symptoms worse in most patients, and more precisely targeted treatments have not yet been developed. Jon.


Roger G's July 20 reply to Kirk V's July 19, 2005 - Hi Kirk, Like Jon tells you, ignore the 5 year statistic. You have some good meds on your side that were not available when that number was created. I just made my 8 year anniversary with DCM and plan to keep going a lot longer. The stomach upset may be due to Coreg, which is a very powerful medication and has many side effects, but also has many benefits. I was quite miserable while I got used to Coreg but after awhile (perhaps six months) I felt much better. Of course, be sure to talk with your doctor about the stomach upset. rogergthree@earthlink.net


Betty L's July 20 reply to Mary M's July 19, 2005 - Hello Mary, I was off and on amiodarone for several years. In 2003, it was necessary to administer by IV large doses over a period of a month. Within 2 months I had developed pulmonary toxicity and had a terrible time. The doctor hospitalized me and stopped the amiodarone but started sotalol. Apparently the protocol for sotalol requires hospitalization for a period of time.
     It took me about 6 months to feel like all the secondary symptoms related to amiodarone were gone. Fortunately, the sotalol has worked for me although everyone is very different. I also have an ICD, which was replaced yesterday because the battery was low. I hate when the ICD fires but it is the best insurance I can have. Betty J L. bjlee123@aol.com


Rosemary H, July 20, 2005 - Hello all, This is my first post, and is to anyone. My husband has recently been diagnosed with CHF, although he has probably had it for some time based on the edema in his feet. He has recently been having problems with dizziness, supposedly fom the codeine in the cough syrup prescribed for his dry cough. He now says he feels like there is a rush to his head when first trying to go to sleep. Is anyone familiar with what this might be? Right now, all he is taking is Lasix at 80mg twice a day, Zaroxolyn at 5mg, Levoxyl at 0.125mg, allopurinol at 300mg and Khlor-Con at 160mEq. Thanks, Rosemary H. grannyrose47@aol.com


Craig C, July 20, 2005 - Hi all, Has anyone else had this problem? The skin on the end of just one of my fingers becomes very hard and peels or flakes off. The finger cracks and bleeds for days on end until finally soft new skin developes. The new skin will be alright for 2 to 3 weeks then the cycle starts again. I have had it only on one finger. It is worse in the cold winter months. No creams or moisturizers seem to work. Any help would be greatly appreciated. Craig@cahillandassociates.com


Barb N's July 20 reply to Kirk V's July 19, 2005 - Hi Kirk, Actos is a member of a class of drugs that can cause or worsen heart failure, especially for folks who also take insulin, so watch out for increased fluid retention or SOB. Metformin is contraindicated for anyone with reduced kidney function and may not be a good idea for folks with diseased hearts because of risk of lactic acidosis. High doses of metformin like you are on may also lead to nausea (but I think many of the other drugs we take can also).
     There is a new injectable drug (approved in March for Type one and Type 2 diabetics) called simlyn, that delays stomach emptying and decreases hyperglycemia, and reduces insulin requirements also. It is a synthetic version of a natural hormone produced by the pancreas, which, like insulin, is lost when we burn out the pancreatic beta cells. The reported side effects include (joy) nausea, especially on startup and it requires frequent blood sugar monitoring. It also seems to promote sustained gradual weight loss, which would be a relief for many type 2 diabetics, as many of our other drugs (like insulin) promote weight gain. protoplasm2@aol.com


Gary W, July 22, 2005 - Hi everyone, I was wondering as a newly diagnosed CHFer with the complication also of a-fib, if anybody else is or has been in this same boat, and how do you handle it? What kind of medical procedures or processes have you pursued? Thanks, Gary. gary@jackofclubs.net


Yvette's July 22 reply to Kirk V's July 19, 2005 - Hi Kirk, Jon is right, ignore the "expiration date." I've had PPCM, which is dilated cardiomyopathy caused by pregnancy, since 1996. I was 26 at the time and as you can tell, I'm still here. No one can tell you how long you have.
     Unfortunately or rather fortunately, depending on how you look at it, I am no longer working. I had an EF around 35% for several years while working full-time but last year it just became too much. An echo and later a stress test revealed that my EF had gone down to 20% resting and 19% upon exertion. Every once in awhile I am sad but I look at it this way: The doctors don't control how long I will live here. I believe there is a reason I'm not working at that particular job right now, so I'm okay with it. It allows me to rest when I need to instead of coming home and having a hard time moving. I was so bad that when I came home all I could do sometimes was just lie there, I couldn't even do the things my daughter wanted me to do for her I used to feel so bad.
     I don't sit around the house all day anymore, I'm in school working on my degree. I've joined a gym which is okay with my doctor as long as I take it easy when I'm having one of my bad days. On my not-so-good days when I go to the gym, I may not do cardio much but I will lift some weights. On the worst days I just stay home. I've also started exploring my city and surrounding area. Now, I don't do these things every day, I can't. Some weeks I can only get to the gym twice or not at all, but I'm okay with that.
     The goal is to keep me out of the hospital, which I've been pretty good at doing. I haven't been admitted since 1998. If your doctor tells you to do nothing but rest as much as you can, I would rethink that advice. See if he will agree to some exercise. Some of the info online might tell you to do nothing but there is current info that is more helpful. Consider this - most of the negative information you've read is geared towards those who are over 65 and have had damage to their heart caused by years of abuse and from heart attacks, and based on the old advice of sitting at home doing nothing. finch32219@yahoo.com


Rob P, July 22, 2005 - Hi, Though asymptomatic I've have an EF of 36%, dilated myopathy and multiform nonsustained PVCs. I have been told I need an ICD implanted and I am looking for someone with experience with them. I am extremely active. I jog, walk, golf, swim, and fear that I will no longer want to do anything. I was put on 10mg lisinopril for three months and it did nothing to raise my ejection fraction. I'm 41 with two young children. rrobpaul@excite.com
 
Jon's note: Beta-blocker use is more likely to let your EF rise and should have already been started. Three months is not nearly enough time to write off any meds therapy, especially when you're only taking half the regular target dose. I suggest getting a heart failure specialist immediately so you can get proper treatment and get better.


Lowell P, July 22, 2005 - Hi, I have been finding it more difficult to walk lately as my legs seem to tire more easily. I discovered that my heart rate even when I am working quite hard is in the low sixties. I have recently began taking Avapro (an ARB) at 75mg once a day. Any correlation there? Thanks, Lowell in Arizona. Lpepper3m@aol.com
 
Jon's note: There is a possible link. Besides the low heart rate, do you have low blood pressure, or any lightheadedness?


Susan D's July 22 reply to Craig's July 20, 2005 - Hi, I have had the same problem with our family member. I have no idea if it is related to heart failure or heart failure meds, but never had this issue until all the meds were added. This finally cleared up with a prescription from the doc that contained a higher percentage of dex (steroid) than you can buy over the counter. With all the issues associated with heart failure you would think a person could be excused from anything else going wrong!
     One thing I have figured out, being on the outside of heart failure, is that you folks are as tough as they come. You all continue to amaze me. duetfarm@mindspring.com


Susan L's July 22 reply to Dave C's July 19, 2005 - Hi Dave, My hands go to sleep when sitting around or lying in bed. I also get restless legs somethimes when trying to get to sleep. I often experience a crawling or tingling feeling in my face and arms. This was most noticeable riding in a convertible and on a motorcycle. On a few occasions I got nauseous, sweaty and then both arms went completely numb, my face tingled and my fingers, especially the thumb and index finger of my left hand, twitched. My husband actually had to feed me and give me something to drink as for about 10 minutes or so my hands would not move.
     I told the doc and he said if he had to guess he would say it was caused by a drop in blood pressure. My blood pressure is low to begin with. I suspect the exposure to air (the convertible, motorcycle) brought about these episodes. Perhaps it causes a dehydration that upsets the balance of sodium and potassium, and certainly we CHFers have poor circualtion. Anyway, yes, I have the situation and yes my doctor seemed not terribly concerned. susanlocurto@hotmail.com


Sky T, July 22, 2005 - Hi all, I had some blood work done and I do not understand it at all. Here it is. Total CKB = 4006; CK-MB = 119.7; Relative index = 3.2; Alkaline phosphatase = 142; AST/GOT = 181; CPK = 4006; ALT/GPT = 98; BUN/Creatinine ratio = 8.6. My CO2 was high and my O2 was 83%. These results seem way out of normal range and I'm wondering if I should even be walking with these results. I hope to find some insight here and maybe someone could explain what some of this means or even what the tests are for. I see the doctor on 7/27/05. Please e-mail me. Sky. wendyharrell@bellsouth.net


Marilyn M's July 24 reply to Yvette's July 22, 2005 - Hi Yvette, I read your post and I am in very much the same situation. I had a heart attack at age 37. I did alright, and went back to work and exercised regularly. At age 45 I had an ICD/pacemaker implanted for ventricular tachycardia. That was okay, I still worked and still exercised well. I was actually running road races and managed to get a medal or two. I had a lot of fun.
     Then last May I had to have my mitral valve replaced due to rheumatic fever. I went through surgery great but went into full heart block right afterward. It's been hard with all my electrical problems. My EF has dropped to 35% and my left ventricle is moderately dilated. I'm paced 100% in my ventricle and 22% in my atria. I have really good days and for months I was just shocked how I could go from feeling and exercising wonderfully to barely being able to get out of bed. It just made no sense.
     This went on for at least 9 months. Then after one of my regular echos, my electrican doctor (EP) told me I had cardiomyopathy and congestive heart failure. I couldn't believe it. I had to first find out what it was, and by accident I found this site. I truly believe for once I could have written this manual book. I'm amazed that I can feel so good one day and so awful the next. This is new territory for me. I thank heaven others know what I speak about. My doc never told me all this was normal for heart failure. I've been complaining for months about fatigue and shortness of breath. Of course, I've had shortness of breath on and off for years.
     I go to my EP doc next month and I will get an av echo optimization stress test. My EP thinks this might help me breathe better when I exercise, if my AV (antrio-ventricular) setting can be adjusted better to my needs. I guess most ICD devices come with a standard program and it's not working well for me.
     A couple of weeks ago I found out my ICD/pacemaker is on the Guidant recall list - first class recall! Talk about luck. Well, I am lucky, I'm lucky that I can say I have a recall - others have not been lucky. Many patients who need an ICD don't get them. I've decided I'm going to wait till my ICD/pacemaker battery gets close to end of its life before I get a new one, which will probably be 6 months to a year. Then I'm going to get a different brand implanted. I've had adjustments with programming and meds over the years and the ICD/pacemaker hasn't been too bad overall.
     My mechanical mitral valve works well but this heart failure is awful. I don't know, I just get frustrated I can't do the things I could do before. I still work full-time but I find it very hard at times. Mostly I work just 4 days a week, most of the time 5 is too much. I also have an appointment with a CHF specialist next month. I guess they try to get the meds to help me.
     I don't know whether I would qualify for disability but I'm glad to hear that the statistics for mortality are better than what I've been reading. I just have to slow down, but by how much? I'm so glad I found others who understand and feel like I do. I thought I was going crazy, running road races one day and barely able to get out of bed the next. Thank you all for listening. I love this web site and I'm slowly reading all your posts. Best wishes, Marilyn. Runner7891@juno.com


Zaidi H, July 24, 2005 - Hi all, I am writing this post in regard to my uncle's condition, who recently suffered a cardiac arrest. It happened Monday night (07/18/05). We took him to a hospital emergency room, where the cardiologist did an angioplasty and opened up a clogged artery. However, according to the doctor, the left side of the heart has been considerably damaged. The problem I face is that the doctor has been very rude and blunt in informing the family about the available options, pretty much telling them there is not much he can do. I understand that they have to give the worst case scenario, but still there is a way to break the news to the concerned family members.
     I wanted to know what our options are at this point. Are the damaged muscles repairable? Can they use an LVAD? Right now my uncle is in CCU at San Antonio Medical Hospital, in Upland, California. He has an HMO (Cigna Healthcare). Is there a different cardiologist we can get him referred to through the primary care physician? Can we take him to Loma Linda, Cedar Sinai, UCLA, or USC Medical Centers? Thanks. hzaidi000@hotmail.com


Tony M's July 24 reply to Craig C's July 20, 2005 - Hi Craig, I just wanted to tell you that my cousin has something like that and it was found to be reaction to ink in money and on paper. He owns a couple of small stores and counts and handles a lot of cash, and his thumb and middle finger on one hand does that. He treats it with a steroid creme.
     I also want to say I came out of neck surgery okay. I had my discs C-1 through C-7 fused together. It turns out one of my titanium plates had turned and broke off one of the screws they put in a year ago. Now they know why I had so much pain! The pain was running up my blood pressure and it finally strained my heart untill my ejection fraction dropped into the 30s again. I went through a hard time with this neck thing and it's not over yet but I thank all of those who put in a prayer for me.
     I am glad my cardio doctor figured out that the pain was making my heart strain, and got my neurologist and pain doctors attention, and they got my pain medication changed so I could get some relief. With so many people using pain killers for fun it makes the doctors wary and people like myself suffer until I almost had a stroke or a heart attack with the pain. That puts down the myth that pain can't kill you, it can. Thanks, Tony. ynotmyrick@yahoo.com


Lowell P's July 24 reply to Jon's July 22, 2005 - Hi Jon, Thanks for the reply to my question about leg fatigue. No, I do not get out of breath and my blood pressure is what I think of as good. It ranges between 125/70 to 115/65. It has been extremely hot out here for the past month, over 115° F and I suspect that contributes to my legs becoming more tired than usual. I have been walking only in the very early hours, around 5:30 AM.
     I do wonder about adding the Avapro though. It seems as though the only thing it has done that I can determine is lower my blood pressure a bit. I always appreciate your opinion, Jon. I noticed someone asked about BUN/creatinine ratio. What should it be? Thanks, Lowell. Lpepper3m@aol.com
 
Jon's note: From 10 to 16 to one. Your doc probably wants to see if adding an ARB can stop your body from sidestepping the effect of your ACE inhibitor, not a bad idea.


Stephanie W, July 24, 2005 - Hi everyone, I just wanted to say something for those who have family members with CHF. My mother was diagnosed with CHF in May of last year at age 56. Her doctor wasn't really any help at all, so I bought my mother a bunch of a books so she could read for herself what was going on with her.
     For awhile she was doing good. I was monitoring her food and she was following what the books said. Since we lived on separate coasts I wasn't able to keep as close an eye on her as I wanted. In December I decided to move back so I could monitor her and just make sure she was doing okay. Unfortunately, my mother got a cold in mid-December. Then on Christmas night she went to the hospital and passed away, only 7 months since being diagnosed.
     I'm telling you this in hopes that those who have family members with the condition can make sure their loved ones are getting the proper treatment, and to make sure they know when they need to go to the hospital. I don't think my mother ever understood just how serious a condition CHF is and how imperative it is to be checked out even when you get something as simple as a cold.
     I will always wonder what the outcome would have been had I moved back sooner. Of course, I know I can't blame myself. However, I hope those who have the condition or have family members with it will learn as much as you can about CHF and make sure you and your loved ones are being properly treated. If your doctor is no help, then you must be your own advocate because the truth is that no one else will. starryeye79@netscape.net


Roger G, July 24, 2005 - Hi everyone, Please check out the following page, since Guidant is backtracking on some advice it gave doctors last month concerning problems with its ICDs. The company now says their advice may actually increase risk to patients. See www.wral.com/health/4757812/detail.html. You can get more info by using the link labeled "Guidant" at the end of that article, which is a pdf file. rogergthree@earthlink.net


Monique B, July 24, 2005 - Hello, I am new here and a caregiver for my husband. He was diagnosed with heart failure from the VA and since that time we have had many different doctors and different answers. My question today is that we were told his heart is only working 57%. What is normal and how bad is this? The doctor who told us this was his psych doctor, who read it in his file and he did not know, but said it was not good and of course the other doctors failed to mention this to us when we were in the hospital the last time when the stress test showed this.
     They just said that his incident was not heart related and sent him home again. Please give me some help here and somewhere I can turn to get answers because the VA is not forthcoming with information and my husband will not go outside the VA because of cost issues. Thanks. teddiegirl@hotmail.com
 
Jon's note: Get a copy of all his medical records immediately because without them, we have no idea what to tell you. While you get his records, start reading at chfpatients.com/faq/ef.htm and chfpatients.com/start_here.htm.


Steven P, July 25, 2005 - Hello, How are the different levels of heart failure measured? I understand the ejection fraction, however I do not understand how it relates to the seriousness of my HF. I was told initially that my EF was between 15 and 20%. I believe 60% is optimal. phoenixs@us.ibm.com


Marilyn M's July 25 reply to Rob P's July 22, 2005 - Hi Rob, I read your post and I have had an ICD now for 4 years. I was able to run road races for many years. I think getting a good ICD program is very helpful. I have a Guidant ICD and mine was just recalled but I'm not going to get it replaced until my battery goes dead, which should be around 6 months to a year. My EP keeps a close eye on my battery status - I'm interrogated every 3 months. I like to think of my ICD as an insurance marker, like having my own ER in my body.
     I just found out a couple of weeks ago that I have cardiomyopathy. Last year I had a mechanical mitral valve replacement. I did really well after my surgery but went into full heart block and my electrical just hasn't been the same since then. My EP will be doing a special echo to optimize my AV pacing, which should help my breathing upon exertion. I will also see a CHF specialist next month and will start on meds. I have heard that Coreg is very helpful but can take up to 6 months or a year before patients see a difference, so I guess it takes time.
     As you can see I've had quite a history of heart problems but up until this past year I was able to do everything I wanted to do physically. A lot of it depends on the meds you have to take and the program you have. Ask for a manual if you get an ICD and ask lots of questions. They can also program you on the treadmill to make sure you're able to breathe and exercise. There's lots of things that can be done to help. Take care and best wishes. Marilyn M. Runner7891@juno.com


Jon, July 25, 2005 - Hi everyone, I got a reply from the FDA. There is no currently available generic form of the beta-blocker Toprol-XL in the United States. Bummer - I take Toprol-XL myself. Jon.


Michelle B, July 25, 2005 - Hi all, I would like to talk to people who have had a heart transplant or parent of a transplanted child. My child was had a heart transplant 4 years ago. Please write soon. jbrillon@charter.net


Bill H's July 25 reply to Gary W's July 22, 2005 - Hi Gary, Welcome to the club. I also have CHF with DCM and a-fib. Not to make it sound silly. but I take all my meds, which includes warfarin, and go about my business best as I can. I hope that helps. bj5250@yahoo.com


Chuck F's July 25 reply to Monique B's July 24, 2005 - Hi Monique, I am a VA patient and am very proud to say so. I am also a nurse of 20+ years. Who diagnosed your husband? A psychiatrist or psychologist has no business giving you that information if you have not already been informed (your husband), you can even tell them I said so.
     I would have your husband call and schedule an appointment with his cardiologist or his primary care doctor and have them review everything. Almost all the VA systems I am aware of have a primary MD assigned to each case (or in a cardiology instance, a cardiologist). All the VA systems are online. Visit www1.va.gov/directory/guide/home.asp. Keep yourselves well informed and never leave unless you are. Good luck. chfrancis@adelphia.net


Roger G's July 25 reply to Lowell P's July 22, 2005 - Hi Lowell, I also take Avapro and know that one of the rare side effects can be muscle cramps, weakness or fatigue. Perhaps your doctor can try a different med. I hope that helps. rogergthree@earthlink.net


Roger G's July 25 reply to Monique B's July 24, 2005 - Hi Monique, Jon gives you good advice on learning about heart failure and you can take that to the VA. What I mean is that the better your questions to the doctors are, the more they will talk with you. Ask them what the specific diagnosis is and which specific tests they have done to determine the 57% functionality of his heart. Fifty-seven percent may not be bad if they are talking about EF with no cardiomyopathy. I wish I had an EF of 57%!
     Once you know this, you can do research on meds and ask them about those meds or about therapy available to treat his condition. Those that have read my posts here know I tend to rant about making doctors speak up and share knowledge. It is up to us to know what we are asking about and then go research and understand what they told us, then ask more questions. A final thought, see a specialist even if it costs a few extra dollars. Life is so precious and we are all here for a reason.
     A note to all others that read and learn here - When you can, make a donation to Jon to keep this site alive. We live longer by Jon's work here. In my experience, I have never found a better place to exchange experiences or learn about our situation. rogergthree@earthlink.net


Cheryl C, July 25, 2005 - Hi all, I haven't posted anything since asking how in the world one could eat with CHF, but I've been busy monitoring the site. Well, good news is I have figured out how to eat and it's getting wonderful. I've found some really good recipes in some low sodium cookbooks I bought and had a couple of great ones sent to me (thanks Val). I've gained 7 pounds which is great but I'm still looking for more.
     Actually, I look and feel much better than before I was diagnosed, but still get a little short of breath when carrying objects. Using my upper body seems to cause me more of a problem than just walking. Has anyone else experienced this? At the end of June my doctor increased my Coreg to 12.5 mg twice a day (double what it was) and after the first miserable week, I've adjusted well. That first week was a nightmare of fatigue, sleeplessness, and general malaise. I go back to the doctor again on Thursday and I think he's going to increase it again.
     My question is: I hear everyone talking about the nasty side effects of Coreg, but are they only what I've experienced or is there more at a higher dose? I suppose I can cope with another week of what I had before, but it wasn't fun. If the side effects get worse with higher doses, I don't know. Apparently for some of you, the side effects did not subside at all. Even though I feel good now, he wants to get me up to 25 mg twice a day.
     My EF was only 20% when I went into the hospital at the end of April. After reaching the target dose, the doctor wants to have another echo done to see what if any improvement there is. I would assume since I feel so well, that it's much better, but I've read enough posts here to realize there is a difference between EF and how you feel.
     I hope everyone is doing okay. We need to keep positive whenever possible. cocojo86@yahoo.com


Roger G's July 26 reply to Cheryl C's July 25, 2005 - Hi Cheryl, I think the Coreg side effects you have are normal but be sure to talk with your doctor about them. I was quite uncomfortable for about six months while getting up to target dose and then getting used to it. I still have a few problems with the meds, all of them, but that is where we live now. I hope you feel better once you get to your target dose and adjust to the changes it brings. rogergthree@earthlink.net


Mary Anne M's July 26 reply to Mary M's July 18, 2005 - Hi, It's interesting about the amiodarone. I had been on 200mg a day since March of 2004, then the doctor added another 200mg in January of 2005. Each of these was following a spell of a-fib and brief V-tach, the last following endovascular repair of an abdominal aneurysm.
     I kept feeling worse and stopped the extra 200mg and after a week began to decrease the rest of it. When diagnosed in 01/2000 with CHF, my EF was at 22%. This past week I had a contrast echo and the tech said she was reading 40% (but didn't believe it) and wrote down 35% as her guess. You have to keep on top of your meds and whether or not they are still necessary. I was considered a candidate for a biventricular pacemaker, but now don't meet the criteria. The electrocardiologist is talking about inserting an ICD/pacer. I see him 08/03 and will find out then.
     All I know is that I feel better without the amiodarone - don't be reluctant to ask! mameredith@nauticom.net


Tony M, July 26, 2005 - Hello, I wanted to thank Sandy N for her prayer and good vibes. I am getting stronger every day since the neck surgery. I also saw on the national news about doing heart caths from the wrist area. I have had seven operations on neck, knees, intestines (diverticulitis), 3 shoulder operations, and a wrist and an elbow surgery all in the past 5 years, but I still regard the heart cath as the worst thing I ever went through.
     I was wondering if someone might know if and when this is standard or is it going to be? Let's hope this is common before you know it. I cant handle the urine catheter. I might change doctors if he orders me one up and they are not doing it yet. I go to UAB (University of Alabama at Birmingham). In fact, Jon quoted my doctor on some questions about medicines. I couldn't dismiss him but I really love hearing about this new procedure. ynotmyrick@yahoo.com


Rita C, July 26, 2005 - Hello everyone and hello Jon, Your site has a wealth of information thank you for caring. My mother is 77 and has been told by her cardiologist at their last visit a few days ago that she is at end-stage CHF and he has given her highest possible doses of her diuretic medications. She is 16 kilos over her normal weight. The doctor said that when the diuretics start to make her kidneys fail (again) that will be when nature will take its course (death).
     My concern is, what is available (hospital or home) for end stage care and alleviation of pain and suffering? Is there anyone here who has experienced seeing their loved ones go through this and how were they managed. From what I have read, end stage is horrific and I am having anxiety attacks thinking about it all the time. Unfortunately, I cannot find much information on the issue. I would love to hear from anyone who can offer something. Many thanks, Rita. rita_costa@ihug.com.au
 
Jon's note: Inotropes, morphine, and Bumex are all used in end-stage heart failure to ease breathing, fatigue, and anxiety.


Roger G, July 26, 2005 - Hi All, Another stem cell trial is going to be done. See www.wral.com/health/4767253/detail.html. rogergthree@earthlink.net


Mary M's July 27 reply to Mary Anne M's July 26, 2005 - Hi Mary, It's nice to meet another Mary. All I can say is that Bob is now two weeks without amiodarone and is so much better it is unbelievable. He was on the drug for almost 3 years for V-tach. Which as far as we know only occurred twice, maybe the amiodarone was preventing it. However he does have an ICD which has never fired, and since stopping the amiodarone, it still hasn't fired. So far, so good.
     Bob did not have the lung or liver problems associated with amiodarone. He did have 11 out of 15 of the other side effects listed, enough to make him very, very sick. I think with long-term use, amiodarone has the ability to make anyone sick. His EF was 10 at diagnosis and has risen to 40% per his last MUGA. I attribute this to the Coreg and Aceon. He does not have edema, never has - very lucky that way. It's good to hear from you, and stay well. Mary. snoopy2dane@hotmail.com


Karen K's July 27 reply to Rita's July 26, 2005 - Hello Rita, Just a thought regarding your mother's care when she is in the final stages of CHF. Would hospice be a possibility if she would prefer to remain at home? My mother is in a nursing home and was at one time under hospice care in the nursing home but she gained enough weight to disqualify her. I expect that soon she will again qualify. Karen. karenk@machlink.com


Patty L, July 27, 2005 - Hi everyone, This is my first visit to the site. I was told recently that my EF is 20%. My doctor is having me start a low dose of Coreg at half a 12.5 mg tablet. My husband is to take my blood pressure and call the cardiologist to see what meds to take next. I have been taking Vasotec and Inderol. Does this sound like a plan? The doc has mentioned changing my pacemaker to an ICD/pacemaker. On top of all this, I have to have a hysterectomy for uterine cancer but must wait until the EF gets better. Does anyone else have all this going on? I'm 54 and feel great with no symptoms. lukelink@earthlink.net
 
Jon's note: You're off Inderol now, though, right?


Mary Anne M's July 27 reply to Roger G's July 26, 2005 - Hi, I went to the WRAL site and could not find anything about another stem cell trial. Do you have any more info? I truly think this will be the best hope for CHF patients. mameredith@nauticom.net


Giorg's July 27 reply to Roger G's July 26, 2005 - Hi Roger and everybody, Is anything on the horizon about the use of stem cells for idiopathic/familial cardiomyopathy? As far as I know, every trial for now is just about ischemic (caused by heart attack) cardiomyopathy. Is there any hope for us who have idiopathic/familial DCM in this kind of therapy? giorgclunei@hotmail.com


Rene A, July 27, 2005 - Hi all, My father has CHF and has been complaining much of being cold, sometimes to the point of wearing his winter coat around the house. Is this normal for CHF? cj1238942@yahoo.com


Roger G, July 27, 2005 - Hi All, Changes to SSD may be on the way. The Social Security Administration plans to publish proposed regulations for public comment on Wednesday and issue final regulations by the end of the year. The administration expects it will take a couple of years to implement the new system throughout the country. See www.ssa.gov/pressoffice/pr/dib-process-pr.htm. rogergthree@earthlink.net


Jimmie R, July 30, 2005 - Hi all, I have just been diagnosed with CHF in March. I take 12-1/2mg Coreg, 5mg Zestril and 10mg Lasix though they all will be increased the 3rd of August. My EF is 10% and 15% on an echo and a cath. I have SOB almost all the time. They say I am class 3. The only real good news is that Social Security gave me disability starting in October. Does anyone know a web site that I can figure out the correct vitamins that could make a difference in my case? Thanks for any help with prayer, for you all. Jim R. jlr@mei.net


Susan D's July 30 reply to Rene A's July 27, 2005 - Hi everyone, I love this board. Sooner or later every question or concern gets an answer or at least another person says, "Me too!" Rene, I don't know the age of your father but this is definitely something we also deal with on a daily basis. It has been especially worrisome lately as our area has been in a terrible heat wave, today at 105° F with a heat index above 115. People have literally died as a result of the heat. My 88 year old father-in-law wore his heavy winter sweater all day, in the house. I insist the air conditioner stay on because he can't breathe without it, but even with it set at 80 he has on big socks, shoes, long sleeve shirt and winter sweater. I am pouring sweat and he is cold. So yes, especially for the elderly, the internal thermometer doesn't work so well anymore. duetfarm@mindspring.com


Roger H's July 30 reply to Rene A's July 27, 2005 - Hi Rene, I'm not at that point, but I do know that after the surgeries my metabolisim did change and when others are sweating I'm either cold or just comfortable. rkharmony@highstream.net


Norma L's July 30 reply to Rene A's July 27, 2005 - Hi Rene, It is quite common I believe, for CHF persons to be cold. I was never cold before but once I was afflicted with CHF, I am cold even in hot weather! I wear socks most of the time, especially to bed!
     My doctor has taken me off Mavik, an ACE Inhibitor. I had a spell of lightheadedness and was feeling well. I have been having blood work done every 2 weeks and go for an echocardiogram this coming Monday. I am surprised because when he put me on Mavik, he said I would be taking it the rest of my life!>br?      May God bless your father and your family. Thanks Jon, for this place to exchange and vent our different ways of handling our problem. nvl@pennswoods.net


Roger G, July 30, 2005 - Hi All, Regarding my earlier post on the SSD changes, Jon gets credit for doing some additional research and finding a better link than the one I sent him. Thanks, Jon. rogergthree@earthlink.net


Anita S' July 30 reply to Rita C's July 26, 2005 - Hi Rita, I'm sorry to hear about your mother's health. I was present when my brother died from lung cancer. The hospice nurse was there to administer morphine. If your mother has the right medicine at the end, the dying process will be easier. The nurse kept giving my brother morphine when he needed it. My father died at home with CHF without hospice care but the family was there. He just kept getting weaker all day. His ICD went off once. He had already been shocked back twice at a hospital the week before and did not want to have that happen again. Each time he was shocked back, he got weaker. We were having to help him out of bed to his chair when he was able to get up.
     My mother, sister, and I asked God to help his death be easy. We were lucky, his heart slowly gave out and he didn't fight for breath or suffer. He just went to sleep. Hopefully your mother's death will be as easy. There is nothing that I can say to really help you, but try to not worry so much that you get sick. If you are a person of faith, ask God to provide the strength to help you get through this. He helped me. I never thought that I could watch two loved ones die and get through it. Please know that my thoughts and prayers are with you. Take care. dreamersila@netscape.net


Tom S' July 30 reply to Rita C's July 26, 2005 - Boy, I just loved reading the horrific details of end-stage CHF, which just about gave me an anxiety attack, considering the fact I'm either in it or about to endure it makes me feel all that much better that I know what to expect. Not! bigheart@muchomail.com


Joy K's July 30 reply to Rita C's July 26, 2005 - Dear Rita, In reply to your post regarding end-stage care for CHF, hospice nurses can be very creative with medications and other devices in making patients comfortable. In the area where I live in Wisconsin I cannot say enough good things about our local hospice chapter. My sister, after being diagnosed with brain cancer and when in the final stages, was cared for very compassionately and very skillfully by a team of hospice folks in England. They managed her nausea, her pain, and her breathing difficulties and provided much comfort. I have witnessed personally in the hospital where I worked many patients dying. I can honestly tell you that the patients who chose to have the hospice team involved had less difficulties. In many instances there was even laughter in their rooms.
     Morphine updrafts to ease breathing were given at much more frequent intervals and various combinations of medications used. Hospice teams had more time to be with the patient and their family. You can talk to a team member from a hospice chapter and then if your mother decides this is for her you can all be involved in her plan of care for when she needs that specialized care. I believe it does take a special kind of person to understand and care for the dying patient and their family members. I wish you the very best for you and your mother. Joy. pjkachel@aol.com


Jon, July 30, 2005 - Hi everyone, I'll put in some words on hospice care that I think really need to be said. I'm all for hospice so don't get bent over this. There is a great and terrible confusion in hospice caregivers about what palliative care really is for people with heart failure. I have discussed this with doctors who write about ethics of care for CHFers and they agree there is a great misunderstanding in this area right now.
     CHF is not at all like cancer in the end stage and to really make a CHFer comfortable during end-stage illness requires the exact opposite of cancer patients. Very few hospice workers have this figured out yet. Here's what I mean.
     Hospice demands that cancer patients stop life-prolonging therapies to get hospice care. Since hospice is meant to ease suffering during end-stage illness, this seems reasonable to me. A problem exists for CHFers, though. The same meds that prolong life in heart failure also reduce symptoms and ease suffering! Hospice at times demands that ACE inhibitors and beta-blockers (for example) be stopped to get hospice care. This increases suffering, which is not their intent, but none the less, it does.
     What will ease suffering for end-stage heart failure patients? Morphine will but is almost never used. That's because it is viewed as pain relief. For end-stage CHFers, it is an excellent venodilator (it reduces afterload - the resistance against which the heart must pump) and it reduces anxiety which makes breathing easier. This means it definitely should be considered for end-stage CHF although no "typical" pain may exist.
     Another choice that is rarely used but nearly ideal is inotropes - see chfpatients.com/inotropes.htm. These drugs can shorten life and may cause arrhythmia. On the other hand, they greatly strengthen the heart's pumping action, which immediately makes you feel better. Remember that the most severe, immediate CHF symptoms like edema and shortness of breath are caused primarily by weak heart action. Increase the heart's strength and the symptoms are immediately reduced! Why this is not always considered for end-stage CHF is primarily due to the lack of understanding about heart failure that exists in hospice organizations, which are geared far too strongly toward cancer care and other illnesses that involve pain as the worst end-stage symptom.
     With true end-stage CHF, I think it's a bad idea to severely restrict sodium and fluid intake. Some restriction is needed of course but making these restrictions tighter and tighter when you're dying is just stupid. Instead, consider switching to an extremely potent diuretic like bumetanide (Bumex) with much more frequent blood electrolyte checking and appropriate potassium, calcium, and magnesium supplementation. This should allow food and drink to be more enjoyable at a time when it's just almost impossible to enjoy anything.
     One other thing comes to mind. If someone with end-stage CHF doesn't have a pet, consider bringing a reliable (well trained and well behaved) dog in for short periods of time for them to be around. You'd be amazed at how great the emotional benefit can be.
     So when talking to hospice, be sure to discuss these issues. If you are in this situation, you can e-mail me and I'll give you a phone number where you reach me to discuss any specific questions you have. Just remember that I am not a doctor and you need to double-check my information just like all information. Jon.


Ann M, July 30, 2005 - Okay, I need some help. As I told you previously, I was diagnosed with CHF at the end of April. Before that I've had 2 heart attacks, a stroke, an ICD because of ventricular tachycardia and insulin dependent diabetes.
     Three weeks ago I was at a restaurant and suddenly felt like my numbers for blood sugar were crashing. I've been there before so I ate 15 fortune cookies (Asian restaurant). Instead of getting better within 25 minutes, I got worse. I got very dizzy, sweaty (I never get sweaty) and clammy. My mother and sister-in-law took me to the emergency room. I had to be helped out of the restaurant, hanging on to both of them. Once at the hospital, they did the typical tests to see if I was having another heart attack (blood, EKG and chest x-ray), but nothing else. They did check my blood sugar and it was 104 about 45 minutes after I had eaten the forturne cookies.
     I continued to be dizzy for over 2 hours once I got to the hospital and it stopped only about 20 minutes before discharge. A doctor came in after I'd been there 3 hours and said to go home. My potassium was a bit low at 3.3 and they gave me a liquid to drink 5 minutes before I was released but there was no sign of heart attack. I went home and pondered this - I know my body so well - there was something going on that was more than the blood sugar or potassium.
     I went to see my cardiologist and he thought so too. He said we had 3 options: Do nothing, do a stress test (again, since I had one just in May) or do a heart cath. We decided to start with the stress test and then proceed to probably the heart cath. I did the stress test this past Tuesday and they called with the results Wednesday, and nothing has changed from May's test.
     So the doctor isn't wanting to do anything. We're going to meet August 9th to talk. This one is scaring me. Please give me ideas on what to do. If I went to another heart doctor and he looked at the 2 stress tests, would he want to do anything else? Help! betsythebeagle20022002@yahoo.com


Chris L, July 30, 2005 - Hello all, I am 56 years old and have had heart failure for the last 6 years. I have never posted before but have read for quite awhile. Right now I seem to be doing quite well on my meds and have no real serious problems, but my doctor wants to give me a biventricular pacemaker, based mostly on the fact that I have a left bundle branch blockage.
     What I would like to know is if anyone with this pacemaker already, could give me some feedback both positive and negative about their experience with it? I'm kind of leery about getting it and would like to hear what some of you have to say about it so I can make a more informed desicion. I have already read all the medical information and would like some personal experiences to go with it. Thanking you all in advice for any help you may be able to give in my making this decision. akdct@yahoo.com


Cheryl C, July 30, 2005 - Hi all, Well, I had my visit to the cardiologist yesterday and was told that I was doing very well. The Coreg, spironolactone, and benazepril seem to be doing the trick along with low sodium foods and 2 liters or less of liquid a day. He took me off of Lasix when I was 3 weeks out of the hospital (beginning of May) and I haven't had any swelling issues at all. I've been keeping my sodium intake less than the 2000mg per day he recommended, after a few false moves initially.
     It was no big surprise to me because I had been warned previously, but he increased my Coreg dose. Here's the kicker though, he increased it from 12.5 mg to 25 mg, my target dose. I really kind of hoped it would be a a smaller increase but on the plus side, I'll only feel really nasty once, I guess. He told me if I couldn't tolerate it, that I could back it down again but I'm determined to give it a real try before I do that. I wish I was home in bed though!
     Anyway, the good news is that he said I didn't have to come back for 3 months. That made me happy but also scared me a little even though I know I can call anytime if I have trouble. He also said he wouldn't have another echo done for awhile yet and thought maybe at the end of a year my EF would go up to 30 (it was 20% at diagnosis). I was pretty disappointed when he said that. I know it doesn't really mean anything, because I've read all the posts here, but I feel so good that I was hoping for huge improvements in EF. If there is no improvement or only a small one, I'll probably be crushed. Maybe my attitude will improve when this new Coreg dose stops kicking my rear. I sure hope I bounce back as quickly as I did with the previous increases. cocojo86@yahoo.com


Yvette's July 30 reply to Marilyn M's July 24, 2005 - Hi Marilyn, The question of how much to slow down is a tough one. Some days you will feel great like you don't have a problem in the world, then a few days later you can feel like a heavy weight is on you, which is harder on you because you are so young.
     However, if you have a doctor who says to do nothing, I would run in the direction of another doctor. If a doctor makes light of your situation and tries to make you feel like everything is in your head, you need to drop that doctor on the spot. What would help is if you have at least one person who can understand your situation, someone who can act as a speed bump, so to speak, to slow you down. I know for me, I have a tendency to push myself too hard for too long a period.
     If you and your doctor feel that you truly need to slow down from work and you should go on disability, what's the harm of applying? It only took me 4 months before I got a letter saying I qualified. finch32219@yahoo.com


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 Jon C.

Talk to Jon Site Index