The paperwork never ends The Archives
January 16-31, 2002 Archive Index

Ruthie A 1-16     seek diuretic/no diuretic experiences
Dorothy P's 1-16 reply to Rick J's 1-13     stroke did strange things
Jack D's 1-16 reply to Ruthie A's 1-16     sulfa allergies and diuretics experience
Scott Brown's 1-16 reply to Margaret D's 1-15     working out
Nancy C 1-17     don't understand the system
Joe S' 1-17 reply to Scott Brown's 1-16     seek advice on chest contraction
Ruthie A's 1-17 reply to Jack D's 1-16     sulfa allergies and diuretics
Jan S' 1-17 reply to Karen's 1-11     disability questions
Tracey C 1-17     seek beta-blocker experiences & more
Tom S' 1-17 reply to Nancy C's 1-17     fibromyalgia and disability
Amelia's 1-18 reply to Nancy C's 1-17     it was harder in the past
Paul R 1-18     ICD trial information
Nancy C's 1-18 reply to Tom S' 1-17     the system is weird & more
Christine 1-18     Coreg experience
Kelly 1-18     seek PPCM info, resources
Diana 1-18     are vision disturbances common?
Tom S' 1-19 reply to Nancy C's 1-18     fibromyalgia
Sheryl C's 1-19 reply to Diana's 1-18     eye problems and diabetes
Samantha B 1-20     losing exercise tolerance a great worry
Stephanie 1-21     Disability decision holdup - question
Joyce 1-21     is it normal to just get tired of it all?
Janet T B 1-21     does anyone else get these Coreg side effects?
Tom S' 1-21 reply to Joyce's 1-21     coping with heart failure
Walter K's 1-21 reply to Joyce's 1-21     getting tired of heart failure
Ruth 1-21     does anyone else get these Coreg side effects?
Herbert L's 1-22 reply to Joyce's 1-22     we do affect those around us
Cheryl's 1-22 reply to Stephanie's 1-21     seek SSD experiences
Jacky 1-22     has anyone had acid reflux raising Coreg dose?
Ron 1-23     am I in denial?
Tom S' 1-23 reply to Jacky's 1-22     acid reflux and CHF meds
Jon P's 1-23 reply to Joyce's 1-21     coping with CHF - attitude
Marly's 1-23 reply to Jacky's 1-22     acid reflux experience
George 1-23     how do I tell if my docs are any good?
Dave Thibodeau 1-23     Medicare providers may get more scarce yet
Clara D's 1-23 reply to Jon P's 1-23     great attitude
Valerie's 1-23 reply to Ron's 1-23     denial, and more
Joanne R 1-24     low-sodium recipes
Gatha E 1-24     there is plenty of hope
Jack D's 1-24 reply to Joanne R's 1-24     low sodium cooking
Rick J 1-24     echo report question
Hope M's 1-25 reply to Rick J's 1-24     similar situation - my experiences to date
Joseph P 1-25     things to watch for in the hospital
Ben B's 1-25 reply to Joseph P's 1-25     things to watch for in the hospital
Jon 1-28     posts
Stephanie's 1-28 reply to Cheryl's 1-22     Disability waiting experience
Cathy Palmer's 1-28     questions about potassium and fish oil
Kathy H 1-28     seek diabetes web site
Patrick 1-28     seek tax info about Disability income
Dawn 1-28     seek depression experiences, ideas
Barbara D 1-28     seek west coast pediatric heart surgeon
Derald G 1-28     prayer request
Joseph P 1-28     cardioversion done with ICD
Joyce's 1-28 reply to Kathy's 1-28     diabetes web sites
Mike W's 1-28 reply to Dawn's 1-25     depression
David Wilson's 1-28 reply to Cathy's 1-28     potassium levels experience
Jack D's 1-29 reply to Joyce's 1-28     diet and blood sugar
Ruthie A's 1-29 reply to Kathy H's 1-28     diabetes care & more
Alan's 1-29 reply to Joseph P's 1-28     I have also experienced that
John S' 1-29 reply to George's 1-23     how good are your doctors?
Stephanie 1-29     should I pursue disability further?
Roger J 1-29     seek CHF doc near Peoria, Illinois
Margaret D 1-29     has anyone gained weight on amiodarone?
Catherine L 1-29     surgery experience - anyone else?
Roger Hughs' 1-30 reply to Roger J's 1-29     CHF specialist suggestion
Gul 1-30     seek real-life cath experiences
Janet TB's 1-31 reply to Roger J's 1-29     heart failure specialist suggestion
Tom S' 1-31 reply to Gul's 1-30     cath experience
Dena B's 1-31 reply to George's 1-23     and lots of questions
Eddie V's 1-31 reply to Gul's 1-30     cath experience
Joseph P's 1-31 reply to Gul's 1-30     cath experience
Vicki's 1-31 reply to Gul's 1-30     cath experience
Joanne R's 1-31 reply to Gul's 1-30     cath experience
Ed 1-31     who to believe? & more questions
Joe 1-31     seek South Dakota CHF doc
Mike W's 1-31 reply to Ed's 1-31     you need medical attention
Mike's 1-31 reply to Joe's 1-31     doc suggestion

Ruthie A, January 16, 2003 - Hi, Does anyone here not use diuretics? If so, how do you keep the fluids down other than a super-low-sodium diet and fluid restrictions? I take Edecrin, a non-sulfa-based diuretic that is no longer available. I am running out of my supply and am having trouble finding more. Since I am extremely allergic to sulfa-based drugs, all the other diuretics are off limits to me. What to do?
     I am really concerned about this because I am constantly retaining fluid no matter how hard I try to keep it down. On top of that, I just had to fire my cardiologist because he would not take my CHF seriously. I have not been able to find a CHF specialist here in the Indianapolis area. If they are here, they have been hiding from me!
     If you are getting by without diuretics, how are you doing it? What are you doing? Do you have the option of taking some if you swell up, or do you not take them at all? Any ideas would be helpful, since I will need to bring them up in my first or second visit with my new cardiologist, when I find one. Thanks for the help, Ruthie A.

Dorothy P's January 16 reply to Rick J's January 13, 2003 - Hi Rick, There is something I need to clarify about my IQ of 79. I can write and spell just fine but I think that is because I always could do words but not numbers well. In fact, when I took the exam to work on my Master's Degree, my math score was awful! It was so bad the Graduate Dean's Office called me in for a conference. I could only register provisionally because my math score was so low! If my grades were high enough, I would be admitted to graduate school. I asked him if he knew my grade point average or had looked at my transcript. When he did, he had very surprised look. I had been on the Dean's List every semester. He said he simply could not understand how this could be. I suggested that perhaps the test was not a true indicator of how a student might do. He quickly apologized and said that I could register without restrictions.
     Keeping my checking account balance was hard enough, but it is maddening now. I have failed to write down deposits, written them down twice, written checks to pay bills and then forgotten to take them to the Post Office, etc. The stroke robbed my sense of time. I can't tell whether 6 minutes or 6 hours have passed. Time just evaporates!
     Enough whining! I just wanted you all to know that strokes do strange things. My doc is very surprised that I can drive. I think driving 750 to 1500 miles monthly while working for 27 years imprinted driving permanently! Best wishes, Dorothy.

Jack D's January 16 reply to Ruthie A's January 16, 2003 - Hello Ruthie, Ede is also known as Dethacrynic acid, Ethacrynic and Ethacrynic Acid. However it is sulfa based as you can read at I am also allergic to sulfa-based drugs but I have no problems with my torsemide (also sulfa-based). It seems that I have problems with sulfa-based antibiotics.

Scott Brown's January 16 reply to Margaret D's January 15, 2003 - Hi Margaret, Just do not push things too hard and you should be okay with the machines. If you are short of breath, try taking your diuretic a few hours before you exercise. This may help to clear some of the fluid in the lung tissues. When I have a good workout, I often become very congested after the workout. I have found the diuretic effect from Lasix to be magnified while my heart rate is still up. I'm not sure if this is common. I have found this a useful way to take get more bang for my buck, and easier on the kidneys! Thanks, Scott B.

Nancy C, January 17, 2003 - Hi, While glancing over the messages I noticed a number of people having difficulty obtaining disability. I first applied for it in early 1995. I had been diagnosed with fibromyalgia, acute anxiety disorder, severe depression and other problems. I went through the whole process, had a good lawyer, letters from my doctors, etc.. With all that I still was denied through many appeals until finally my lawyer told me that we had reached the end of it. We could no longer appeal.
     At the end of 1999, right after I received that news, my former husband (we had been divorced for 10 years) died. His sister suggested that I apply as a disabled widow. I found that even though we were divorced I was entitled to his Social Security funds. I applied and was approved for disability within 2 months.
     Now, I'm not complaining at all but I would love to know what changed. I had gone through around 5 years of disappointment, anger, and fear, then my exhusband passed away and it changed everything? I'll never understand the system.

Joe S' January 17 reply to Scott Brown's January 16, 2003 - Hi Scott, You sound like you may have the answer to my problem. Ten months ago I had my aortic valve replaced along with one artery. The doctors told me I could expect my chest to contract for a long time because it had been expanding for over 60 years to compensate for an underachieving heart. My heart had expanded over 30%. It took two x-rays to get all of my lungs and they told me many other organs had expanded. Sometimes after just some work my chest feels like it is under extreme pressure, and every muscle in my body hurts. They keep telling me to be patient, that it will go away soon. Do you have any ideas how I can speed it along or how long the discomfort will last? All my other things are fine: blood pressure, glucose, cholesterol. Help! Joe S.

Ruthie A's January 17 reply to Jack D's January 16, 2003 - Hi Jack, How ya doing these days? I checked out the url you provided and read where it said it would not be a good idea to take Edecrin if you are allergic to sulfa-based antibiotics. After reading the information in the Rx List, I think I understand why.
     If you check out the chemical make-up of Edecrin, you will find there is no sulfur in it at all. That element is needed to make a sulfa-based drug. What happens - and I don't fully understand how or why - is that ethacrynic acid binds with sulfer and hydrogen molecules. Thus, it is possible to have a reaction in your body to this diuretic. However, the type of reaction I have is directly related to the addition of more sulfur molecules through drugs, even though sulfur is a naturally occurring element in my system. That's why I can take Edecrin (a non-sulfa-based diuretic) without having problems with its binding qualities. Make sense? Maybe we should bring in a pharmacist or a biochemist! <g> Ruthie A.

Jan S' January 17 reply to Karen's January 11, 2003 - Hi, I have not been online to Jon's site for a few weeks since I was out of town. In reading back posts I was struck by a question posted January 11 that referred to disability and Social Security retirement benefits. I receive long-term disability and SSD. Will pressure be put on me when I turn 62 to take early retirement by the disability insurance company? I hope not, but I want to know my rights and be prepared. Jan S.

Tracey C, January 17, 2003 - Hi everyone, I received my MUGA results back and my septum over 2 years has gone from mildly hypokinetic to moderate and now to severe. Interestingly though, my EF rose because one of my heart walls is now moving harder to compensate. Basically the doctor is calling the rise in EF a wash because it's not a "true" rise.
     I'm still asymptomatic but am now considering returning to a beta-blocker. I haven't stopped my ACE inhibitor but was taken off Coreg 2 years ago when my EF was stable at 50%. I had so many problems on Coreg that I'm terrified of returning to that particular drug. I've read some of you are on Toprol-XL and some are on Lopressor. Could I get some feedback on your side effects?
     The doctor says we can remain on just the ACE and he is a CHF specialist but with the decline in heart wall motion I can't understand why he's not even suggesting putting me back on a beta-blocker. I've only had a couple of bad days and as I've posted before, my symptoms don't show up as SOB or any of the usual symptoms. My muscles just contract involuntarily and my blood pressure goes up and my heart pounds. It doesn't usually last more than a night and seems to happen when I've been upset about something or overly excited. I'm thinking that it may possibly be an adrenaline rush.
     Anyway, any input on beta-blocker side effects aside from Coreg would be truly appreciated. Also, I would like to mention again that my pharmacy made a mistake and I have an extra 180 Lisinopril 5 mg pills that I won't use and I would hate to see them go to waste. Take care everyone, Tracey.

Tom S' January 17 reply to Nancy's January 17, 2003 - Hi, You probably are receiving Social Security Survivors benefits and not "disability" benefits. You already mentioned you were entitled even though you were not married to your exspouse for more than 10 years. If he does not change his beneficiary the last spouse is entitled to survivor benefits.
     My mother-in-law was in the same boat as you are and has been receiving survivor's benefits for nearly 20 years. Social Security is not too keen on awarding disability for fibromyalgia. I am reminded of a neighbor of mine who "suffered" from it and collected disability but yet could spend hours on her knees working in her many gardens. She also painted the inside of her home several times over and even did murals.
     Yet when her husband became unemployed she couldn't work and they ultimately lost their "neat as a pin home." Sometimes I think the SSD folks do get it right.

Amelia's January 18 reply to Nancy C's January 17, 2003 - Hi Nancy, Back before the early 1990s if one applied for Social security because of disability through her husband's account as a widow before age 60, the criteria to qualify was extremely hard. I can't remember all the things that had to be wrong but it boiled down to being practically 75% bedridden. The judge told me there was no question that my health was poor but I did not meet the criteria for disability as a widow. They later told me I could file on my own and not as a widow, but it didn't pay much then and seemed better to wait and file later. The law has since changed so that doesn't apply now. Go figure. What difference would it make regarding the status of one's health whether one is a widow or not. Best to all, Amelia.

Paul R, January 18, 2003 - Hi, The National Institute of Health is recruiting ICD patients to take part in a study about how ICDs affect our lives. Participants will fill out a questionnaire booklet containing 170 questions about how they feel about their health, including their concerns and stresses, feelings about dependency on life-saving technology, and illness perception. For further information, you can go to their web site at;jsessionid=FA431CA1EAF5B37312518FF4F3CDE051?order=1 or send them an e-mail at I volunteered to do this and I guess they are still looking for some more volunteers. Paul R.

Nancy C's January 18 reply to Tom S' January 17, 2003 - Hi Tom, Fibromyalgia seems to affect people differently. I already had arthritis but the pain I have from the fibro is completely different. Sometimes it feels like somebody is sticking needles in me, in the wierdest places too: the tip of a finger or toe, my calves, head, even my butt!
     Whatever, I'm thankful that I have my disability now. In my case, they do classify it as disability, not as survivor's benefits. I just wish Jack hadn't had to die for me to get it. I can relate to what you said about people receiving disability and still being able to function very well. I know personally of a couple who both receive disability for being slightly, and I do mean slightly, retarded. They get their checks and head for the bar to get plastered. Another man I know has had numerous heart attacks and cannot work and he can't get it. Like I said, sometimes the system doesn't make sense!

Christine, January 18, 2003 - Hi all, I am a DCM/CHF patient from Australia. I am also on Coreg, named Dilatrend here. My doctors and I are pushing for my dose to be increased again. I really can't tolerate it at all and I was very pleased to see that I am not the only one. My doctors make me out to be the exception and I had never heard of others having this problem. I am so pleased to read that I am not alone in this.
     I am only on 18.75mg a day at the moment and every time they have tried to increase this I have been very ill, but they are pushing for 25mg twice a day as my goal. I know that I will never make it. I take an ACE inhibitor, 200mg Lasix, and 75mg Aldactone daily.
     It is good to see that there are also other beta-blockers that appear to work. Anyway, you have given me good amunition for when I next visit my cardiologist. I have a new echo and MUGA coming up next week so I should see how I am doing. Thanks for opening my eyes about Coreg. Love, Chris.

Kelly, January 18, 2003 - Hi, I am new to this board and have just been diagnosed with peripartum cardiomyopathy. I am 30 years old with 2 young children, ages 4 years, and 11 months. I have virtually no symptoms but my left ventricle is enlarged and my EF is 35%. Is anyone knowledgable about this condition?

Diana, January 18, 2003 - Hi, I have a question on behalf of my husband. He has CHF, emphysema, and medication-induced diabetes. He's been experiencing some loss of vision and double-vision. Is this a common occurrence in this type of situation or is something else going on? We were at the doctor's on Tuesday but of course he didn't think to mention it to the doctor or even to me until last night! Diana.

Tom S' January 19 reply to Nancy C's January 18, 2003 - Hi Nancy, My apologies if you thought I was comparing your fibromyalgia with my neighbor's. My wife suffers from fibromyalgia and I know it is a real disease with real complications, some so severe as to merit disability. Fortunately, at the moment my wife's is under control.

Sheryl C's January 19 reply to Diana's January 18, 2003 - Hi, He needs to have his eyes examined immediately. Diabetes can cause eye problems and may lead to blindness. You need to research diabetes, try the American Diabetes Association web page at Sheryl C. cvprehab@hotmail.comM

Samantha B, January 20, 2003 - Hi, I have had IDCM for 6 1/2 years and have been very well compensated. However, I am starting to feel more tired when I exercise. I used to run 3 to 4 miles per day and now I find that I am generally walking for 30 to 40 minutes instead. I wear my heart monitor and I see that my pulse is higher than normal, about 85 to 90 when watching TV. My doctors say my heart sounds strong and clear. My blood pressure was very low at 84/59 so they took me off the diuretic because he thought that may be why my heart rate has been high, compensating for the low blood pressure.
     I feel like they should be more concerned about my decreased exercise ability. Am I wrong? In September of 2002 my doctors increased my Coreg to 25 mg. I am 5 feet 5 inches tall and weigh 115 lbs.

Stephanie, January 21, 2003 - Hi everyone, I had my Social Security hearing in November. I called to get an update on my claim. The lady at SSA said that the judge had approved it, but now my case was before a panel of lawyers. Their job is to make sure the judge has followed the laws. I could hardly believe it. Has anyone heard of this? I patiently wait. She told me they have until the middle of May to make a decision. Stephanie.

Joyce, January 21, 2003 - Hi, Is it normal for a CHF patient to just get tired of doctors and taking all the meds? Is this a sign of depression or just another step to be dealt with. My husband is getting tired and discouraged with doctors and meds.

Janet T B, January 21, 2003 - Hi, I want to add my voice to what may be a Coreg side effect. My evening Coreg dose was doubled on 12/10/2002 to 25mg. The morning dose was then doubled to 25mg on 1/1/2003. Since the December raise, I have experienced slight wheezing and what otherwise feels like soggy lungs, more so on the left side. I went through the SOB and fatigue and increased PVCs, but those appear to be letting up (crossed fingers).
     It's the lung difficulties that are hanging on. Has anyone else had lung-related side effects from Coreg? My experience seems to be the exception too. The Nurse Practitioner who works with my specialist said patients mention initial fatigue, but don't mention other side effects. Janet T.B.
Jon's note: The key words are "don't mention" - patients don't complain to their doctors about side effects every time they happen, and nurses don't always listen well.

Tom S' January 21 reply to Joyce's January 21, 2003 - Hi, There isn't a day that goes by that I don't wish I could walk more than 50 feet without huffing and puffing like the little locomotive that could, or be able to stand long enough to fix a decent meal for my family without spending the next several hours in bed flat on my back. It would really be nice to be able to turn back the clock, but reality says otherwise and we live with reality or we don't live at all.
     Perhaps your husband needs some outside distractions so he doesn't concentrate so much on himself. Even a simple hobby such as surfing the Internet and learning new things on a daily basis can be rewarding. Limited volunteer work such as making phones calls for a charitable organization can be fullfilling. There are lots of things to do on a limited physical basis, but you have to look for them and accept your limitations. There is a niche for everybody to be productive even if it seems insignificant and small at first.
     I guess I am lucky that I have 5 children and a grandchild in my home that constantly remind me of how precious life is. When my wife and kids give me a big smile and show their love for me I suddenly realize just how important I am in their lives and to do my best to keep living for them and for my wonderful wife.
     The aggravation of taking meds and getting frequent blood lettings for tests, and doctors appointments -some of which I drive myself 120 miles to keep - are all worth it for the love that I am being given in return.

Walter K's January 21 reply to Joyce's January 21, 2003 - Hi Joyce, The other night I offered to do some of my wife's chores if she would take my meds. Does that answer your question?

Ruth, January 21, 2003 - Hi, My 62 year old husband was diagnosed with dilated cardiomyopathy and put on 3.125mg Coreg twice a day. After 2 weeks he began having stomach problems with inflamation, pain, and substantial stomach swelling, with no swelling in other areas. His only other medication is prilosec for acid reflux. Has anyone had this reaction to Coreg or the combination of Coreg and prilosec? Any informtion is appreciated, this is all very new to us. Thank you.

Herbert L's January 22 reply to Joyce's January 21, 2003 - Hi, Thanks for the wakeup, the reminder that we all, especially us with medical problems, teach those around us how to react to us. All people do it, but it's up to the receiver (you) how to react. He may be depressed or having an extended pity party or feeling that the end of the road is near.
     Whatever it is, don't let him drain that vibrant, upbeat person from you. He may think he wants to see the frowns of concern but all that does is drag you both down to a weaker physical and mental condition. You didn't say, but maybe he is not doing all that he could do to improve his life. We all feel a little (actually a lot) peeved that we cannot physically do what we did before CHF, and we feel bad about watching our spouse doing the tasks that we did before but that's life and we can be really happy that those pills are keeping us around to at least enjoy the company of our loved ones and giving us peace of mind by seeing that they are more able to take care of themselves than we thought. It also gives us the chance to help change what needs to be changed to make our spouse's life easier.
     Anyway, if he keeps it up ask him if he will cancel his medical insurance since there must be something you could do with the money or tell him that it sounds like it's time to call the hospice people since you have done everything you can. This may seem mean or cruel but sometime people don't realize what they are doing to others who are trying to live the best life they can with them. Best wishes, Herb.

Cheryl's January 22 reply to Stephanie's January 21, 2003 - Hi everyone, This is my first time posting. I've been reading this board for several months and along with the rest of the site, I feel I have learned much. Thank you. This post is specific to Stephanie's but I will post more soon and fill you all in on my life.
     Stephanie, I am awaiting a hearing to be scheduled for my SSD. Can I ask how long you waited for your hearing? I've been hearing the average is almost a year. I'm really hoping it's not this long, I'm not sure how I'll survive financially if it is. Thanks for any and all input, Cheryl. Perruchee@aol.coms

Jacky, January 22, 2003 - Hi, I have a Coreg question. Does anyone else have a problem with acid reflux when increasing dosage to 6.50mg? I never had problems with this before and I could not see any reference to it on the Coreg page.

Ron, January 23, 2003 - Hi, I was recently diagnosed with CHF and CAD. I am 50 years old. I quit drinking 3 years ago and just now quit smoking. I was told I had 2 heart attacks and have 2 major ateries completely blocked, yet I feel fine. I am seeing a CHF doctor who put me on several medications. How can I feel so good if I have so many problems? I've had a stress test, cath and echo, which all show the same results. My EF is 14%. Am I just in denial?

Tom S' January 23 reply to Jacky's January 22, 2003 - Hi, Acid reflux is so person-specific that I wouldn't want to paint with a broad brush on whether one drug or another can cause it. My daily dose of Coreg is 50mg and I can't even remember the last time I suffered from acid reflux.

Jon P's January 23 reply to Joyce's January 21, 2003 - Hi Joyce, Depression is a state of mind and it's up to you to help him move to a new state since he apparently unwilling to pack his own bags. I was given "maybe 2 months" and I immediatly was very depressed. That news does tend to make you feel sorry for yourself.
     I started trying to get everything "in place" so my wife wouldn't have to do so. When I got all that done as best I could, there was nothing left except to wait to die. As long as I had nothing to do it occured to me that it didn't matter what I did. I could even try to enjoy each day one at a time. I developed an attutide that I didn't need to worry about anything. Since I was going to be dead in a short time, who cares what I do or don't do? I changed my Internet name to Tikcuf, to express my new attitude. Once you accept death, you can go on living. Even my friends call me Tik now.
     It's been almost 3 years since they gave me 2 months and now the doc says I've got about 5 months. At this rate, in 10 years I'll be up to a year. Since my attitude change, my wife and I have never been happier. I wish I had discovered this attitude 50 years ago. Do anything you can do to help him change his mindset including asking his doc for anti-depression drugs, but whatever you do, don't let him drag you down too. You'll need all your strength for the tasks ahead.
     I have also found that exercise, no matter how little as long as its regular, really helps you feel better too. I'm sorry to carry on so long but I just want to impress on you how much more you'll both enjoy what's left of the time you have together if you can look on it as another chance to live, regardless of how long. It should be a happy time.

Marly's January 23 reply to Jacky's January 22, 2003 - Hi, I have a chronic acid reflux problem that can be caused by the many medications I take for IDCM/CHF and diabetes. However, I thought it got worse when I shifted my ACE inhibitor to Altace and started Coreg. I've stopped Coreg for about a month now, but I still have the abdominal gas formation (mostly not feeling acidic or erosive to the esophagus) despite my taking 40mg Nexium a day, occasional dimethicone and digestive enzymes.

George, January 23, 2003 - Egads, can I swell your ranks of CHF survivors? Hello all! I'm age 40, weigh 220 pounds, am male with an EF of 30%, and am class one. How do you know if you have a good PCP, cardiologist, and electrophysiologist? Signed, Scared in Texas.

Dave Thibodeau, January 23, 2003 - Hi, Medicare coverage my get more scarce soon. An article I read recently said that doctors who responded to a recent online questionnaire suggest that the number of doctors who won't accept new Medicare patients in 2003 increased by 78% from last year; Less than 2/3 of Medicare-participating doctors will renew their Medicare contracts for 2003.

Clara D's January 23 reply to Jon P's January 23, 2003 - Congratulations Jon P, What a great attitude! Maybe relaxing and enjoying life is the key to extending life, Clara B.

Valerie's January 23 reply to Ron's January 23, 2003 - Hi Ron, I'm the queen of denial. I went 7 years with CHF, CM, and an EF of 15%. I felt great and have been teaching 8th grade. Actually, I got to the point that I did not really believe I was sick and I became careless with my sodium intake and exercise. I don't know exactly what did it. Perhaps all of that plus a very bad cold, but I got SOB and ended up in the hospital again. This time I was in for 8 days and ended up with an ICD with resynchronization pacemaker therapy and a good case of fright.
     I spent my Christmas vacation researching my condition and gathering low-sodium recipes. The best thing that happened to me was that I found this board and this site. I feel pretty good and I thank God every day for that, but I'm not taking anything for granted. On a lighter note, Jon's recipe for sauced pork chops gave me hope for low-sodium cooking! Val.

Joanne R, January 24, 2003 - Hi Jon, When I went to, I found a link to and I bet you knew that all along; Silly me! The recipes really encourage me, Joanne R.

Gatha E, January 24, 2003 - Hello everyone, I just passed my 5 year anniversity and wanted everyone to know there is lots of hope out there. I got a whole lot better when I changed my attitude and fought my depression. I still want to fight taking all the confounded pills, but I know I have to take them to have quality of life. I still manage at least one trip to Club Med a year when I go into severe CHF and pneumonia, but I am alive and I have my faith to thank for that. Good luck to everyone, Gatha.

Jack D's January 24 reply to Joanne's January 24, 2003 - Hello Joanne, Yep we know them guys. Another secret to low sodium cooking is the use of citric acid crystals instead of salt. It's good on all kinds of vegetable dishes, eggs, and all meats except beef. You can get it in bulk at health food stores.

Rick J, January 24, 2003 - Hi, I have questions about my echo. It said my EF is 30%, LV internal dimension diastolic is 6.5cm, systolic is 5.3cm, wall motion index is 2.2, with severe global hypokinesis of left ventricle. I feel shot most of the time but the railroad retirement board seems to think I can work. Any comments? Thanks.

Hope M's January 25 reply to Rick J's January 24, 2003 - Hi, Rick. Gee, our echos sound similar. My EF is 30%, LVID diastolic is 8.28cm, LVID sustolic is 7.22cm. I don't know what my wall motion index is, but the report also says severe global hypokinesis of left ventricle.
     I have been working part-time and feel very tired by the end of each day. I have an appointment with my cardiologist on 1/28, and plan to ask him if disability would be appropriate at this time. Meanwhile, I took the leap and quit my job (I'm a legal secretary) and am planning to be a legal secretary temp, filling in as needed in law offices instead of taking on any steady work for awhile. I'm tired of being tired. Everyone here knows that feeling. Hope.

Joseph P, January 25, 2003 - Hi, I recently was put in Club Med for a tikosyn startup and the things that went on could have been harmful to some who could not respond. The meds I was taking at home were to be the same in the hospital but they kept trying to change them. When I refused to take them, they would read the orders more carefully and say that I was right and they thanked me for making them go by the orders. Make sure when a new person comes in to the room and asks you questions that they look at your are wrist band identification first.
     It also makes a big difference if you have a loved one visiting often. Communicate with loved ones about what is happening so they know when something is not right. Communication is key to survival in the hospital.
     Since there is a nursing shortage they are working 12-hour days. To me, after the 10th hour of work is when mistakes started to happen, which is understandable. These nurses are doing a great service and need all the help they can get from us. I am not complaining, just trying to help make things better for someone. Joseph P.

Ben B's January 25 reply to Joseph P's January 25, 2003 - Hi, Having been through a couple of bad experiences with my mom and dad in the past year, I want to reiterate what you say. It is especially important to stay diligent if you are in an HMO and staying at an HMO type of hospital with a majority being HMO patients. If you are being seen by a number of doctors, they will all try to jack around your meds.
     Plus, there is a new thing, or new to me, which is a guy called a "hospitalist." He is a doctor who is supposed to coordinate treatment but basically just is looking to save money. After losing my father, who had a terrible experience, we got the same hospitalist with my mother when she had a stroke over Christmas. I can't tell you how close that guy came to being knocked out cold for being such a jerk, and I'm talking about my sister punching him because I sure don't have the strength. <g>

Mary, January 25, 2003 - Hello, My husband as of about 6 months ago had an EF of 15%. As of 2 months ago after having an echo it has increased to 25%. He is on Altace and Coreg. Maybe someone has an answer for me. How can he feel so good when he has an EF this low? The doctor is hoping it increases to 50%.

Jon, January 28, 2003 - Hi everyone, I am having some physical problems, (what's new, huh? <g>) so I'll be slow catching up on yesterday's posts as well as getting today's posts up. Jon.

Stephanie's January 28 reply to Cheryl's January 22, 2003 - Hi Cheryl, I waited about 6 months for a hearing. I wrote to my Senator after about 3 months and asked if there was anything he could do. He did write a letter to SSA and maybe that sped things up a little. I also contacted our representative, but his office suggested just going with one office or person at a time. They said that one office can pull your file to work on it and then when another request comes in, it gets stalled while the other office works on it. So sometimes nothing really gets done. It is so hard to wait. My husband has income. My heart really goes out to you if that will be your sole support. Sincerely, Stephanie.

Cathy Palmer, January 28, 2003 - Hi, I have 2 questions. Can I get too much potassium, and how would it affect me? Would I know without a test? Also, can you get too much fish oil and how would it effect me? Thanks for being there, Cathy.

Kathy H, January 28, 2003 - Hi, Does anyone know of any sites similar to this one, but for diabetes? I saw my cardio doc Friday and he thinks my primary care physician isn't agressive enough in managing my newfound diabetes. Soooooo, I guess I have to learn all about that now too.

Patrick, January 28, 2003 - Hi, I just got my 1099 tax form and when I follow directions it looks like I do not owe any taxes on the $19,131.10 I got from SSD last year. According to the form, if Line E is less than $25,000 for a single person then you owe no taxes. Line E is 1/2 the amount of total income, so according to that a person can make up to $50,000 a year without paying any taxes? That can't be right. If anyone is a tax preparer and can answer this, please e-mail me. I am very confused. Thanks, Patrick in California.

Dawn, January 28, 2003 - Hi, I've been reading posts from last week, greatly relieved to know others have been plagued by this, though not wishing it on anyone else. I have battled depression off and on for most of my adult life but since my diagnosis in 09/02 it has been unrelenting. It probably does not help that my 8-day hospitalization and initial diagnosis coincided with the breakup of my marriage that I had worked so hard on, short-lived though it was. I had an EF of 20 to 25%.
     Fortunately, or maybe unfortunately, I do medical transcription at home so I can stop and rest when I need to rest. The flip side is that some days I never leave the house. Also, my cardiologist, who has also taken care of my mother, is a bit cavalier when I tell him how tired I am. For example, if I do laundry I'm too tired to work the rest of the day. His response is to nod as if to say it's to be expected but nothing more.
     My real purpose in writing this is to ask if anyone has anything detailed regarding the root of this depression. Has anyone seen or heard anything definitive on whether it stems from facing our mortality as most of us have been affected in our prime and while in reasonably good health? Alternatively, could this be related to our disease in a chemical way or even drug induced? I would be really interested in what any of you have learned. I just think it is more than situational depression.

Barbara D, January 28, 2003 - Hi, I'm just wondering if anyone would know of a pediatric heart surgeon on the American west coast. I normally post questions about my husband but this time he has a 3-month old relative who has already had heart surgery and is taking the same meds as most of the adults on this forum. From the latest update it appears she is in heart failure at this time. Any information would be greatly appreciated.

Derald G, January 28, 2003 - Hi to all, It's been awhile but I need your help. My 65 year old fther-in-law had another heart attack last Friday. Today they inserted 3 stents and a balloon. We would appreciate your prayers for a speedy and lasting recovery.

Joseph P, January 28, 2003 - Hi, When I was in the hospital one of the things that was done to me was a cardioversion. It was done with my ICD instead of going to the EP lab and having the big patches put on and then being shocked. Something new, maybe. Joe.

Joyce's January 28 reply to Kathy's January 28, 2003 - Hi, Try the following for diabetes:

Mike W's January 28 reply to Dawn's January 25, 2003 - Hi Dawn, I'm sorry you're feeling the "blackness" but your message is a bit confusing. You first state that you've been suffering from depression your adult life but seem perplexed that after discovering you have a chronic and potentially fatal illness; and the breakup of your marriage (two of the most traumatic events a person can have), that your depression is more profound now, given that you are prone to depression! You've just answered your own question.
     As a psychotherapist I feel confident in saying that there is no single formula or set of causes that can be set out in some kind of formula. Every human is different in makeup and how we react. Most important however, is that you gave no indication that you are receiving help/treatment for your depression. Are you receiving medication from a psychiatrist? Are you in psychotherapy? If not, why not?! For most people suffering depression there is relief available. You should be one of them. Peace, Mike Wafkowski.

David Wilson's January 28 reply to Cathy's January 28, 2003 - Hi, Too much potassium can make you very sick and so can low potassium. It put me in the hospital last August. You have to have a blood test to check on potassium. When my cardio doc found my potassium too high, he took me off Aldactone (spironolactone) and gave me some medicine to reduce my potassium. He overdid it and my potassium crashed too low and I got very sick and ended up in the hospital. I fired that cardio doc. My new cardio doc said to take my spironolactone and to eat a low potassium diet. I am okay now but I sure was sick for awhile.

Jack D's January 29 reply to Joyce's January 28, 2003 - Warning! Danger, Will Robinson (and Kathy). Stay away from the link that Joyce recommended. It's information is dangerous. First off, it states that 75% of your food should be from starches, fruits and vegetables. If you are diabetic and especially if you are diabetic trying to control your disease by diet, that web site could kill you.
     Better that you visit the site below and get into the discussions and look at the useful and safe low-carb recipes provided. Carbs are killers! Carbs are sugar, starch, and carbohydrate. Visit with the forum people. Learn about the morning surprise - high blood sugar when you wake up. Learn how to get rid of it by setting your alarm for 3:00 AM and eating a light snack like half an avocado or a piece of chicken breast with olive oil, and watch your numbers tumble.
     See Jack.

Ruthie A's January 29 reply to Kathy H's January 28, 2003 - Hi Kathy, Is your primary doc treating your diabetes? You may need an endocrinologist, just as you need a CHF specialist to treat your CHF. The "endo" will help you manage your diabetes, provide you with information to help you learn as much as you can about your disease, and coordinate with your cardiologist and primary care physician to ensure that your diabetes management does not interfere with other needs.
     Hopefully you are seeing a podiatrist; good foot care is essential to your health. Also, check out the American Diabetes Association web site at Ruthie A.

Alan's January 29 reply to Joseph P's January 28, 2003 - Hi, I had the same thing done to me several times.

John S' January 29 reply to George's January 23, 2003 - Hi George, You just don't know. My suggestion as a physician with the disease is to read this site, read this site, read this site. Don't over-react to wrongheaded decisions by your PCP. Sixty-seven percent of PCP's still undertreat CHF but they learn fast and hate to be wrong. Don't fret if we act like we are always right. We have to act that way (lawsuits, pride, decorum, to name a few reasons). Good luck. If you use this site and this board to temper new info, you will soon learn the competency of your docs. John S.

Stephanie, January 29, 2003 - Hi, I just got the mail and my Social Security has been denied at the hearing phase. I can't tell you how awful it feels to basically be called a liar. I don't know what to do now. Is it worth pursuing further? The cardiomyopathy is hard enough, this just makes it worse.

Roger J, January 29, 2003 - Hi, I am looking for a good CHF doctor in the Peoria, Illinois, USA region. Any help would be greatly appreciated.

Margaret D, January 29, 2003 - Hello, fellow CHFers, Has anyone experienced weight gain on amiodarone? I have been gaining about one pound a week. I gained only 1 to 2 pounds total on 6 months of Coreg. Recently I kept track of caloric and sodium intake for a normal day. I had less than 1700 calories and also 1700mg of sodium. Comments?

Catherine L, January 29, 2003 - Hi, I'm back among the living after having major abdominal surgery January 3rd for intestinal angina. The surgeon cut away the ligament that connects my diaphragm to my backbone where the ligament was strangling my superior mesenteric artery, and a ganglion or nerve bundle that was strangling my celiac artery. Now my intestine is getting enough blood! He said this condition is rare and usually occurs in tall thin women. Weird. Go figure!
     All I can say is, the surgery was as bad as I thought it would be. I never want to have surgery again! The worst part was the first 2 days after surgery, not just the pain but also the fact that most of the nurses and aides that cared for me were not very compassionate. One nurse cooly informed me, "We don't believe in coddling our patients here." My stress level went through the roof at that comment. I thought I was in One Flew Over the Cuckoo's Nest. I hope that that nurse has major surgery and meets her own Nurse Rached someday!
     My last 2 days in the hospital though, were redeemed by a wonderful, caring male nurse. Though it's been nearly a month and I'm now home, I am still plagued with horrible hypersensitivity of the skin around the top 1/3 of my scar, making the slightest touch there painful.
     I also have an intermittent but severe pinching sensation in that area which makes sleeping difficult. I think that may be where the ligament was cut away, I don't know. I sure hope this abates in another month or so. Has anyone else ever had these sensations with their own surgery?
     My new cardiologist is wonderful and was very pleased with how my heart was able to handle all the liquids they pumped into me during surgery. We are now increasing my Toprol-XL and I add Altace next week, now that I don't have to worry about the lower blood pressure from my heart drugs in tandem with the strangled arteries, precipitating an attack of mesenteric ischemia.
     Here's hoping 2003 is better for all of us! Catherine.

Roger Hughs' January 30 reply to Roger J's January 29, 2003 - Hi, I am a 52 year old male and have "enjoyed" CHF since May of 1997. I am totally satisfied with medical care at Midwest Heart Care, 420 N.E. Glen Oak Ave, Suite 402, Peoria, Illinois, 61603. Their telephone number is (309) 674-1114. Let me know if you need anything else.

Gul, January 30, 2003 - Hi, I am scheduled for a cath (angiogram) on February 10, 2003. Has anybody else gone through this? I have read about the procedure but the risks involved scare me. Can anybody shed some light on this procedure? Thanks.

Janet T B's January 31 reply to Roger J's January 29, 2003 - Hi Roger, I want to also highly recommend Heartcare Midwest in Peoria, Illinois. After becoming completely fed up with my local cardiologist, I sought help at Heartcare. I am now being treated by a heart failure specialist who really knows his stuff. The first thing he did was gradually increase the piddly dose of Coreg I was on (6.25 mg BID and only through pleading with my local cardiologist) to target dose.
     I can't tell you how much more confident I feel about my care. I didn't feel safe with my local care and let me say it makes a big difference knowing my health care is in the hands of someone who is on the forward edge of the field. I wish I had gone there right after my diagnosis, but instead ended up wasting 7 months. Feel free to contact me for any more info. Good luck!
     To Roger Hughs, thank you for also recommending me to Heartcare Midwest. It was through the info you shared with me that I ended up going there. Such is networking. :-) Janet T.B.

Tom S' January 31 reply to Gul's January 30, 2003 - Hi, What may seem like a cake walk to me might seem like real torture to someone else, although I have heard from most people who have undergone heart cath the most annoying part of the whole procedure was afterwards. I wasn't aware of the fact that the cath tube was even in my heart because I can't remember feeling hardly a pinch when they went through the insertion procedure in my groin area.

Dena B's January 31 reply to George's January 23, 2003 - Hi all, I was doing some research and ran across this site. I was taking antidepressants for about 4 years until this condition got so bad I had to stop them. In December of 2001 it got to where I could not even shower without having to stop halfway and go lie down and wait till my heart quit beating hard and my breathing got back to normal.
     The doctor finally diagnosed me with CHF but wanted me to go to a specialist to get his opinion. Well, the specialist couldn't tell me anything. The antidepressants were causing much of the problem and I had gained a lot of weight while on them. My weight is too hideous to mention here. When the heart thing got so bad, I quit the antidepressants on my own, slowly. By the time they took tests on my heart about 2 weeks later, it was getting better. They said they couldn't really tell from the echo because of my size and the other tests weren't too good either.
     By about March I was doing like "normal." I had lost about 40 lbs and wasn't even trying actually. I wasn't having any heart problems or anything. I got back on Paxil and it all started again. So I quit those. A couple of months later arthritis was driving me crazy as it has throughout. Nothing seemed to help so they gave me Celebrex and my heart thing started up again, so I quit that. That was up till about June of last year.
     I really had not thought I had CHF anymore. I am a believer and thought I had been healed till a couple of weeks ago. My ankles swelled up for about 36 to 48 hours. That hadn't ever happened before. My ankles swell occasionally but usually not long if I stretch out or something. I sit a lot and thought that was it before. I also had another shower episode that scared me! I will be 40 in June. I have never been on any meds for any kind of heart problem. The only time I ever had high blood pressure was during labor and when on antidepressants.
     After researching some of this stuff it looks grim and I am really scared. I lost a husband who had bad CHF. Are there any e-mail support groups around? I don't know whether to go to a doctor or just try to lose this weight and exercise cautiously till I get "thin" enough for them to do more tests or whatever. We don't have insurance and I am just not sure if we can even afford the meds. This is a fairly mild stage, I think. I can get around okay with light activity. Due to the depression and back problems I have had, I haven't done much of anything in 6 or 7 years.
     This is probably way more than anyone wanted to know or read, so I guess I better get to my questions. Do some of the meds interfere with hypoglycemia or with hypothyroidism? I have low thyroid but never low enough for anyone to do anything about it. One doctor gave me thyroid medicine and her partner stopped it. Is it bad to try to lose the weight fast? Does anyone know a good heart doctor in eastern Texas? What about insurance? Any suggestions for poor folks? <g> What do you do when you are scared and feeling really hopeless?
     I hope I can remember to check back here again. Thanks y'all. Dena B, age 39. I am scared in Texas too, George.

Eddie V's January 31 reply to Gul's January 30, 2003 - Hi, I know the feeling of dread that you are having. It has been my experience that the waiting is the worst part. As far as the procedure, it's less painful than a rookie starting an IV. I've lost count of the caths I have taken: 5 or 6 plus one right heart cath.
     A few things: you'll probably get something to relax you and that's good. It will be cold so ask for an extra blanket. If you just have a cath with no roto-rootering or stents, recovery is a snap. I have heard of people walking out a few hours later. Here's a big tip, if they keep the cath sheath in while they decide what to do or if they did angioplasty and stent work, then you're going to be lying on your back with a 300 pound nurse trying to do a handstand on your groin for awhile. When they ask you if it hurts, say yes! If you're still awake after 10 minutes, tell them it still hurts. Believe me when I tell you time passes a lot faster when you are asleep.
     As far as the procedure itself, it's interesting to say the least so watch if you can. My trifocals don't line up so I can't see much. Complications can be real serious but are rare and outweighed by the possible benefits in most cases. Good luck.

Joseph P's January 31 reply to Gul's January 30, 2003 - Hi Gul, I have had one cath, one EPS and one ablation. All of these were a breeze for me because they were looking for, or going to repair, something to help me live longer and have a better quality of life. There was no pain whatsoever in any of the procedures. I was entered from both sides of the groin area to do the various procedures, with not even a scar. Good Luck and God bless, Joseph P.

Vicki's January 31 reply to Gul's January 30, 2003 - Hi, I have had an angiogram at the same time they did a biopsy and an EPS. I can't remember a thing about the procedure. They give me a sedative. I had to lie still for a few hours afterward so I didn't bleed too much. I hope all goes well for you, Vicki.

Joanne R's January 31 reply to Gul's January 30, 2003 - Hi Gul, I know the whole process is scary. I had gone to the hospital with pneumonia in January of 2001 and they found my CHF situation much to my surprise. They did angioplasty while I was there. I didn't have time to get nervous about it and it turned out to be a nonevent from my standpoint as patient. A coronary artery was cleared out and a stent placed, and to my amazement, it was not painful. My personal experience and that of various friends has been good. The worst for me was the period of lying flat in bed afterward. Good luck and be well, Muddy.

Ed, January 31, 2003 - I started having episodes 5 years ago when moderate activity produced huffing and puffing. My coworkers noticed but I didn't. Having been a martial arts student 2 years and 30 pounds earlier, I wrote it off to lack of conditioning and weight gain, so I put off seeing my doctor.
     About a year later I had a sudden pain in one leg and a baseball-sized explosion of blue veins appeared on my shin. It hurt! I saw my long-time PCP, who hadn't seen me in 10 years, and he did an overdue physical. The x-ray show my heart enlarged. An EKG showed a nearly flat T-wave, my blood pressure was high, and the leg was diagnosed as veinous statis. His pronouncement as CHF and a trip to the cardiologist. I donned support socks to protect my legs from further outbursts and took the medications prescribed by my PCP.
     I stopped taking the meds after a nuclear stress test at the cardiologist found no serious abnormalities or something to that effect. I could stay on the treadmill for an extended period without maxing out.
     Here's my mystery: 15 minutes on the treadmill caused less shortness of breath than I get toweling dry what's left of my hair. Is there any reason that upper extremity and lower extremity activity would produce such dramatically different effects? The cardiologist said I didn't need the meds so I stopped taking them. For months now, I've had swelling in my legs and abdomen, a constant and sometimes violent and productive cough, muscle strain, pains and aches throughout my torso. A good BP for me now is 155 over 110 and a good resting heart rate is anything under 100.
     I began to get concerned again and went to a bargain internist (faith-based clinic) who did a cursory exam, ran blood tests, and then agreed with the original PCP, prescribing Lasix, Lisinopril, and Lipitor. That was in November of 2002. I couldn't afford to fill the prescriptions. All the symptoms are still with me but I'm confused. I have had to choose twice recently between buying the meds and paying my life insurance premium. Ironic, eh?
     So it's 2 to one that I need the meds and have CHF, but the one is a cardiologist. Who do I believe? Could the stress test, focusing on legs only and not upper body, have caused all that expensive equipment to miss something? I'm confused, depressed, and angry. Sometimes I think I'll just wait to see if I have a heart attack so we will all know for certain what is going on. Ed.
Jon's note: Get a BNP blood test right away

Joe, January 31, 2003 - Hi, Does anyone know of a facility or specialist in the Sioux Falls, South Dakota area that treats CHF?

Mike W's January 31 reply to Ed's January 31, 2003 - Hi Ed, I'm no doctor but it sure sounds like you're sick to me; sounds like the average (many of us have been through this) case of denial. Everything you describe to me sounds like instant justification for a trip to a cardiologist. The "mystery" is just a bunch of horse puckey to help you keep the denial going - "Well, if I can do 15 minutes on the treadmill, I can't be too sick."
     Man, please get with it. You're wasting time with all this baloney. Let me see, medication so I don't die or paying for life insurance. For me that sounds like a no brainer. Regarding confused, depressed, and angry, I think it more appropriate that you be scared. Peace and good luck, Mike Wafkowski.

Mike's January 31 reply to Joe's January 31, 2003 - Hi Joe, I've been to Dr. Vonk at the Heart hospital in Sioux Falls. I really like him but I go to Mayo now because I'm on the transplant list. Mike.

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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