The paperwork never ends The Archives
July 16-31, 2004 Archive Index

Sandy H 7-16     am I cured of CHF? & more
Jon's 7-16 reply to Sandy H's 7-16     going off meds & more
Linda Grant's 7-16 reply to Anne's 7-10     eye disturbances & bradycardia
Bill 7-16     seek advice on losing weight
Patricia's 7-16 reply to Jon's 7-13     effects of heat on heart failure
Patricia's 7-16 reply to Kim's 7-12     edema, questions
Pam S 7-16     how do other loved ones handle this?
Roger's 7-18 reply to Patricia's 7-16     handling hot & cold weather
Lori K's 7-18 reply to Patricia's 7-16     get your lymph trouble treated
Cathy 7-18     kids!
Ann 7-20     where did friends & family go?
David Wilson's 7-20 reply to Bill's 7-16     surgery for weight loss
Jerri 7-20     seek nausea solutions
Jim L 7-20     seek edema solutions
Bill 7-20     Coreg versus Toprol-XL
Jon's 7-20 reply to Bill's 7-20     Coreg versus Toprol-XL
Michael 7-20     seek book suggestion
Neil 7-20     seek device, low EF experiences
Greta 7-20     seek experiences with Select Comfort beds
Jeanene P 7-20     seeing another doctor
Giorgio 7-20     seek ideas on bigeminy
Sharna 7-20     what can we do for Joe?
Greta's 7-21 reply to Sharna's 7-20     helping Joe
Jim L's 7-21 reply to Sharna's 7-20     helping Joe
Greta's 7-21 reply to Jim L's 7-20     edema that doctors don't recognize
Robert 7-21     does anyone else black out?
Jim L's 7-21 reply to Ann's 7-20     strange reactions to our illness
Julie 7-21     seek CHF doc in Orlando area
Sangweet Bhagwat 7-21     online book on coping with illness
Dale's 7-21 reply to Jerri's 7-20     easing nausea
Bill's 7-21 reply to Cathleen's 7-13     being diagnosed is scary
Elizabeth K's 7-21 reply to Michael's 7-20     reference book for food counts
Donna H 7-21     update - rough road
Roger's 7-21 reply to Jim L's 7-20     getting rid of fluid
Sandy's 7-22 reply to Sharna's 7-20     a sticky situation
Lydia Moore 7-22     does anyone have foot & lower leg pain?
Mary Anne 7-22     seek info on Coreg dose
Betty's 7-22 reply to Julie's 7-21     Florida cardiologists
Renee 7-22     is my treatment aggressive enough?
Lee R 7-22     seek dofetilide (Tikosyn) experiences
Angela W's 7-22 reply to Sandy H's 7-16     similar good experience
Marvin 7-23     seek EECP experiences
Linda 7-23     arthritis pain - anyone else?
Roger's 7-23 reply to Mary Anne's 7-22     Coreg dose
Roger's 7-23 reply to Lydia Moore's 7-22     Coreg experience
Carla's 7-23 reply to Lydia Moore's 7-22     Coreg experience
Linda's 7-23 reply to Lydia Moore's 7-22     feet and leg aches & new med
Sandy's 7-23 reply to Mary Anne's 7-22     Coreg dose
Teresa's 7-23 reply to Ann's 7-20     coping with loved ones & helping others
Linda 7-23     what should I eat while on Coumadin?
Tunny's 7-24 reply to Mary Anne's 7-22     Coreg experience
Larry 7-24     seek opinions on STICH
Donna H's 7-24 reply to Linda's 7-22     Coumadin & diet experience
Pat H's 7-24 reply to Mary Anne's 7-22     raising Coreg dose
Vicki J's 7-26 reply to Mary Anne's 7-22     raising Coreg dose
Marly's 7-26 reply to Mary Anne's 7-22     raising Coreg dose
Mary Anne's 7-26 reply to Lydia Moore's 7-22     Coreg & leg pain experience
Mary Anne's 7-26 reply to Linda's 7-23     Coumadin and diet
Lori K's 7-26 reply to Linda's 7-23     chemotherapy effects
Fran 7-26     seek info on my condition
Henry T 7-26     seek amiodarone experiences, especially stopping it
Robert 7-26     need ideas about blood pressure control
Greta 7-27     sleep study, CPAP, seek suggestions
Karen K's 7-27 reply to Fran's 7-26     eating vegetarian
George B's 7-27 reply to Henry T's 7-26     stopping amiodarone experience
Sherry R 7-27     seek ideas on financial assistance
James 7-27     financial assistance for meds
Belle 7-27     gout, diuretics - some questions
Angela's 7-27 reply to Henry T's 7-26     amiodarone experience
Angela 7-27     seek others in Las Vegas, Nevada, USA
Steve H's 7-27 reply to Henry T's 7-26     stopping amiodarone experience
Marti K 7-27     what does this mean?
Deb 7-27     any thoughts on these "cycles?"
Nora 7-27     where do I go from here?
James' 7-28 reply to Greta's 7-27     CPAP tips
James' 7-28 reply to Sherry's 7-27     some suggestions
Mary Anne's 7-28 reply to Deb's 7-27     diet & other possible factors
Sherri's 7-28 reply to Henry T's 7-26     amiodarone experience
Marti's 7-28 reply to Jon's 7-26     seek tips for mental side of CHF
Sarah 7-29     Al died
Sandy's 7-29 reply to Sherry R's 7-27     Social Security Disability possibility
Sandy's 7-29 reply to Marti K's 7-27     being "in" heart failure
Sandy's 7-29 reply to Marti K's 7-28     adjusting to life with heart failure
Hal 7-29     can't get prescriptions
Jon's 7-29 reply to Hal's 7-29     can you explain further?
Paul 7-29     seek New Jersey support group
Kathy H 7-29     questions on fatigue and relaxing
Cary Deen 7-29     gout experience
Chelsie 7-29     update, off to high school soon
Greta's 7-30 reply to Paul's 7-29     a good site to use
Greta 7-30     has anyone else had this?
Charles 7-30     seek CHF doc in Florida
Hal 7-30     seeing a doctor
Jon's 7-30 reply to Hal's 7-30     seeing a doctor
Sandy's 7-30 reply to Sarah's 7-29     condolences
Marti's 7-30 reply to Sandy's 7-29     nice not to be alone
Susan L 7-30     Social Security is the pits
Joy 7-31     what meds aggravate depression?
Donna H 7-31     lengthy transplant evaluation at VA
Cathleen 7-31     update
Jon's 7-31 reply to Cathleen's 7-31     critical information on making decisions
Tunny's 7-31 reply to Charles' 7-30     hang in there
Greta's 7-31 reply to Charles' 7-30     finding info & more
Greta's 7-31 reply to Susan L's 7-30     disability
Sandy's 7-31 reply to Marti's 7-30     coping with heart failure
Mary Anne 7-31     seek Pittsburgh CHF doc
Yvette's 7-31 reply to Greta's 7-30     retaining fluid experience
Joy's 7-31 reply to Greta's 7-30     edema not in the ankles
Susan L's 7-31 reply to Greta's 7-30     getting doctors to listen
Roberta's 7-31 reply to Greta's 7-27     CPAP experience
Mary Anne's 7-31 reply to Linda's 7-23     finding drug information
Bill C's 7-31 reply to Sarah's 7-29     condolences & more

Sandy H, July 16, 2004 - Hi, Once you are diagnosed with cardiomyopathy or CHF, does it go away? My EF is up to 50% and wondering if it will go down. My doctor has taken me off some of my meds and he can't give me an answer. Has this happened to anyone else? Thanks.

Jon's July 16 reply to Sandy H's July 16, 2004 - Hi Sandy, Once you have heart failure, you technically have it for life - you are just compensated or decompensated. See The Manual for a lot more explanation on this, including the heart failure "stages" included in the section on heart "class."
     Beware of doctors taking you off CHF meds! The official treatment guidelines call for continuing beta-blockers and ACE inhibitors even if your heart function returns to normal. To go off these particular meds can cause your heart function to go back down, with terrible results. Some people do fine but they are the exception rather than the rule! Jon.

Linda Grant's July 16 reply to Anne's July 10, 2004 - Dear Anne, I am sad to hear about the loss of your husband last year. Could you explain further about his left eye disturbances? My father had bradycardia and his heart rate would go down to 30 beats per minute. He would pass out all the time. I am getting bradycardia now. It is scary because my blood pressure goes down very low also. I have to see a cardioogist in 6 months. Feel free to e-mail me any time. I am also interested in people suffering from bradycardia. God bless you, Anne. Stay strong.

Bill, July 16, 2004 - Hi, I hope someone can help me on the subject of weight loss. I'm taking in about 2000 or less calories a day now, and keep my sodium down around 2000mg daily. Lately my weight has gone up almost 10 lbs in a week. I try to do as much as I can on my good days, like walking, yard work, etc,..., but that's like sitting on a double edged sword, exercise on good days then be sick for a day or two. Any answers?

Patricia's July 16 reply to Jon's July 13, 2004 - Hi Jon and everyone, I'm a 54 year old female with dilated cardiomyopathy and CHF with an EF less than 20%, diagnosed last February. I've been watching the posts for several months but this is the first time I've posted. Shy, I guess. <g>
     I am interested in your comments about the effects of heat. I've decided my entire body temperature is bonkers! My hands and feet stay like ice all the time. I can put on 2 pairs of socks, gloves, and get under a ton of blankets, but it makes no difference. It's like they are cold from the inside out. Couple that with the fact that I also have bouts of breaking out into sweats, especially at night, and you get a very interesting effect.
     I also have enlarged lymph nodes in my chest which the doctors think may be either a slow growing lymphoma or sarcoidosis. Due to the location of these nodes, invasive chest surgery is required to do a biopsy and the doctors are loathe to do that now due to the condition of my heart. We are watching them for signs or growth with CT scans every 3 months.
     As to the effect of heat, I notice that if I am outside in heat 80° F plus (I'm in the southern USA so that's low here), even if I'm just sitting on the patio I soon get even weaker, very dizzy, and feel like I am going to pass out. I still sweat in that case also, but it doesn't seem to help regulate my body heat. Go figure!

Patricia's July 16 reply to Kim's July 12, 2004 - Hey Kim, I also have most of my fluid retention in my abdomen and internal organs, and none in my legs and feet. My weight can go up 6 to 7 pounds in a matter of hours and as you said, this can be very uncomfortable! Mine does respond to Lasix, however, as long as I watch it carefully and catch it before it gets too severe. I read somewhere that abdominal fluid can be especially hard to regulate because once you get extremely bloated, the fluid in your intestinal tract can interfere with your absorption of the diuretic.
     I'm also interested in knowing if more of you have abdominal retention and any other suggestions on how to handle it.
Jon's note: My edema is always in abdomen and face first, then hands - never feet and legs.

Pam S' July 16, 2004 - First, I am so thankful to have found this web site. It has been a great help in understanding CHF. My father (age 68 years) had a 5-way bypass and aortic valve replacement 2 years ago. He has dilated left ventricular cardiomyopathy and had his first bout of congestive heart failure around Christmas of 2003. He finally quit smoking about 6 months ago, but continues to drink.
     Yes, we've had interventions. I've shared many articles about how alcohol poisons the heart and he has heard us. He is scared and angry about his health and yet he continues to behave in self-destructive ways. I know I can't fix him. I've been to counseling and I pray, but the reality is inescapably sad.
     I just needed to voice my grief and ask how others loved ones cope with this situation.

Roger's July 18 reply to Patricia's July 16, 2004 - Hi, I've found that since my second bypass surgery and CHF, my metabolism has changed. I can seem to stand the heat a lot better than I used to. People at work are dripping wet and I just ask if they are hot. I don't even sweat that much either. My wife says I don't drink much liquid so how can I? I have type 2 diabetes and in the winter I have to wear my socks to bed - feet freeze! With hotter weather, I try to get my walks in the early morning or later at night because my doctor said not to be walking above 80 degrees or below 30. I have a treadmill so that gets a lot of use in the winter.

Lori K's July 18 reply to Patricia's July 16, 2004 - Hi Patricia, I was a little bit alarmed that your doctor would sit on enlarged lymph nodes if he thinks it may look like lymphoma or sarcoidosis. You should go to a hematologist/oncologist for an opinion if you can. They are the best at evaluating enlarged lymph nodes. They can differentiate between lymphoma and sarcoid, as well as find if it is nothing to be alarmed about.
     Also, lymphoma can cause cardiomyopathy so if you have lympohoma you want to treat it, and it is possible your cardiomyopathy may go away. Sarcoidosis looks a specific way on a CT scan and x-ray, and the radiologist or your doctor should know that. There are several blood tests that help indicate lymphoma as well (sed rate, blood calcium, liver enzymes, kidney function, blood count, CEA).
     If you have sarcoidosis, you need to treat it as well.The symptoms are different. Lymphoma presents with night sweats, chills, fevers and fatigue; sarcoid with joint pain and weakness, fatigue, cough, chest pain, or no symptoms.
     Anyhow, sorry for the lengthy message but it is really important to work up either of these. Biopsy of the nodes is the best way to diagnose lymphoma, if they are reachable and large enough. All the best. I worked with lymphoma patients for 10 years for my job coordinating bone marrow transplant trials. I wish you the best. Feel free to e-mail me.

Cathy, July 18, 2004 - Hi, I heard in my back seat: My 11 year old daughter regailing her best friend about her wonderful recipe for tuna salad. She confided that Mom's tuna was yucky because I use low sodium tuna, but hers is much better because she uses only the best. When I got home and looked over the ingredients she planned to use, here is what I found: Tongol tuna (50mg sodium), eggless mayo (0mg sodium), dill weed (0mg sodium) and 2 hardboiled eggs. Hah! This is the same kid who was crazy about my lasagna, until she found out it had eggplant in it.

Ann, July 20, 2004 - Hi, Is it typical that when family and friends learn you have CHF they disappear from your life? I had 2 heart attacks in February and my heart muscle is too weak for surgery. Since then, those I thought would be supportive have become very busy. This includes my son and his family, who live less than 5 miles from me. I haven't heard a word from them in over 6 weeks. I called after the 4th and ended up in an argument with my son. Are they afraid to be around me? That's funny, I'm afraid to be around myself. I live alone and all sorts of negative thoughts go through my head. The loneliness is by far the worst part of the illness.

David Wilson's July 20 reply to Bill's July 16, 2004 - Hi, On weight loss, if you are 100 pounds or more overweight you might consider gastric bypass surgery. At my diagnosis in 2000 I weighed 350 lbs. I had gastric bypass in October of 2003 and weighed 308 lbs. Now I weigh 203 and am very close to my goal of 199 lbs.
     I have stopped my ACE inhibitor and digitek. After the weight loss, my heart doc said these meds were making my heart beat too slowly. I can exercise more. I can swim laps in the pool. I think the exercise really helps my heart and weighing less makes it easier to exercise.

Jerri, July 20, 2004 - Hi, I am looking for possible answers for my husband Jim, who is in end-stage heart failure and who recently has had such nausea that eating is a problem. He is on IV infusion (dobutamine) and takes all the usual meds. He is listed for heart transplant with Yale New Haven hospital. This nausea has been a problem for the past few weeks. His doctors don't offer much advice about this particular matter. He seems to be able to tolerate small amounts of blender drinks, such as fruit or dairy based "smoothies." Are there any remedies that anyone has tried that help to alleviate this symptom? Thanks. Jerri.

Jim L, July 20, 2004 - Hi, I see a lot of talk concerning edema. My scale tells me that I have it (3 to 4 lbs change overnight) but I cannot convince any doctor, including cardiologists. They just squeeze my ankles; I don't have it in my legs, I suspect the abdomen. They don't respond to my concern. I've given up even mentioning it anymore.
     The joke here is that last time I had catheterization, on the discharge sheet it stated that if my weight would change 3 to 4 lbs overnight I should call their office immediately. What for? To get my ankles squeezed? Needless to say, that's one phone call that isn't made.
     My question is, how does one get rid of this excess fluid? I take Lasix regularly at 40mg per day. Responses appreciated.

Bill, July 20, 2004 - Hi, I am on Coreg at 6.25mg and due to step up a notch. I read somewhere that the Toprol-XL patent expires this year and we can expect a generic. As Toprol-CL is better for diabetics and exercise, and a lot cheaper, would anyone guess about switching from Coreg to the cheaper Toprol-XL? I assume I would have to go back down the mgs slowly. And that Toprol-XL does not need titration.

Jon's July 20 reply to Bill's July 20, 2004 - Hi Bill, As far as I know, Coreg is no worse for diabetics than any other beta-blocker - all of them raise blood sugar to my knowledge. Toprol-XL definitely requires dose titration over time since like Coreg, it slows heart rate and lowers blood pressure, changing the heart's responses to neurohormones. Toprol-XL is already a lot cheaper than Coreg, even though it is still a brand-name drug.
     Would I use it? Yes. I actually saw to it that one of my family members was put on Toprol-XL rather than Coreg when diagnosed with CHF - against the cardiologist's wishes. This was due to the lower cost while still being an effective CHF drug. If I lose my drug coverage for some reason, my first moves will be from Coreg to Toprol-XL and from Demadex to furosemide. If you have high blood pressure, Coreg is still a better drug, though.
     I would like to point out that one reason there are so many trials showing benefit for Coreg is because its manufacturer put on one of the most intensive campaigns ever used to promote a drug with doctors and researchers. Toprol-XL's manufacturer just hasn't laid out as many dollars. Personally, I rather suspect that the two drugs are not as far apart in effectivess as most doctors think. Jon.

Michael, July 20, 2004 - Hi, Could anyone suggest to me a book listing sodium content of various foods? Thanks, Michael.

Neil, July 20, 2004 - Hello, I have just about 6 weeks ago begun resynchroniztion therapy and would like to compare notes with anyone else doing this. I have a Guidant device inside me just below the collarbone and it includes a BiV pacemaker, a defibrillator and an atrial defibrillator. I am in a clinical trial of the atrial thing but that is not what most interests me. At a one-month visit to my cardiologist, my EF was up from in the teens into the twenties. He was a bit disappointed that it had not gone higher.
     I am used to having quite a low EF and yet functioning at a higher level than it would suggest. Does anyone else have this phenomenon? My heart is definitely being paced and the place of incision is no longer tender. I guess I just keep going with this and look forward to any responses.

Greta, July 20, 2004 - Hi all, I finally decided to try the sleep study thing. I am set up for this Thursday. I need some input from everyone on an entirely different subject though. My husband and I need a new mattress for our bed. We have seriously been looking at the advertised Sleep Number Bed by Select Comfort. We have also read all the reviews we could find on the Internet. Have any of you purchased one or been using one for awhile? What is your opinion? We are carefully looking at this since they are rather pricey. We would appreciate any input anyone has to offer. Blessings, Greta.

Jeanene P, July 20, 2004 - Hi all, I hope this finds everyone well and in good hands. I finally have an appointment with Dr. Krueger at Lincoln's Heart Institute. I went to the cardiologist I told you all about a week or so ago. On our follow-up he said that the edema was "just in my nature" and to stop worrying because my heart was just starting to harden. Then he said to follow up with my PCP. I asked him how soon and he said, "whenever." I apologized to him for being such a bother and went on my way. I basically got the feeling that I was paying this person good money to waste his time. Anyway, I feel better now knowing that maybe now someone will listen and treat me like I am human. Take care and God Bless. :-)

Giorgio, July 20, 2004 - Hi everybody, Thanks Jon, for your work that is so accurate. Some cardiologists say that the "Internet is misleading as a source of information about DCM disease" but they definitely do not know your web site.
     I am looking for some information about ways to prevent and avoid bigeminy - sometimes that (benign) rhythm bugs me so much! During these days I am feeling it a lot, also for 20 minutes or more continuously. Should I avoid caffeine at all? I just drink one coffee! I do not smoke and do not drink. What can I do? Thank you.

Sharna, July 20, 2004 - Hi, My brother-in-law was diagnosed with non-obstructive hypertrophic cardiomyopathy 7 years ago. He went off his meds 2 years ago and gradually became worse. He moved in with me and my husband (his brother) Easter weekend, 2004. Two weeks later we were at Florida's Cleveland Clinic. Joe has been showing signs of heart failure for awhile and family members never took him to the hospital because he told them no.
     Well, we gave him an option when he woke up and couldn't breathe, his feet were 3 times the regular size, and he was vomiting: We told him either get in the car or we will call an ambulance. He got in the car. He was in the hospital for a month and was told he needed a heart transplant. This gave him the stamina to live. Joe is 32 years old.
     Now Joe is going into a deep depression. I keep an eye on his medications and when I saw them getting low last week I told him to call the pharmacy and that I would go pick them up. On Sunday July 18th he took his last Lasix. We asked if he called the pharmacy and he said no, that he wasn't out yet. I showed his brother the empty pill bottle and his medication organizer - no Lasix. I asked Joe about his continuing swelling in his feet and if he took his Lasix. He said, "Yeah, I took it but it's just not working anymore." He lied to us and that hurts.
     I see him getting worse gradually. He's tired more and doesn't come out of his bedroom. When we go to bed he sneaks foods that he's not supposed to eat. John and I were just married in May and we are now supporting Joe but I can't help but feel what for? If he's not going to take care of himself and eat what I make him - what he's supposed to eat - and is going to lie to us, what are we supposed to do?
     Joe won't even go outside. We live in Florida and he can't drive because he has a stick shift and no air conditioner. He is so afraid and won't admit it. Please advise me in what to do. We want him better.

Greta's July 21 reply to Sharna's July 20, 2004 - Hi Sharna, My heart goes out to you and your husband in the struggle with his brother. It is so difficult to see someone you love ignore things that could make them better. For what its worth, here is my input.
     Men are so into their ego. Their self-image is strongly connected to their physical image, you know, strong and healthy. When they get sick or injured, they don't do down real well. They see it as a sign of weakness so they reason that, "If I ignore it, it will go away." Family and friends fussing over them about it only makes the feelings of being less a man worse.
     As to what to do, that is different for each person. Find some professional help somewhere. Check with churches and hospitals for support groups that can give you some insight about the best way to handle this. Your brother-in-law needs to find a reason to feel worthful (is that a word?), useful, and needed.
     Maybe somebody else out there who posts to this site will be able to supply more answers for you. Hang in there and just keep showing him how much he is loved and needed. Blessings, Greta.

Jim L's July 21 reply to Sharna's July 20, 2004 - Hi Sharna, That's sad. I really don't think there is anything you can do about this situation with your husband's brother. He wants to quit. I really can't blame him. I always say that the only thing important to me is my quality of life, not the quantity. My best to you.

Greta's July 21 reply to Jim L's July 20, 2004 - Hi Jim, I am glad to know somebody else has had the same problem with edema. Early in my symptomatic history prior to my CHF diagnosis, I paid a visit to the ER because I couldn't breathe. I had no swelling in feet, legs or ankles. After a CT scan they discovered I had a plural effusion and drained 2 liters of fluid from around my right lung. So yeah, I know about the ankle squeezing. I don't believe from my experience that it is an accurate indicator of excess fluid - but try telling a doctor that.
     The last time I went to the ER with breathing difficulty, they squeezed and I pleaded and finally they administered IV Lasix. It worked and I could breathe again. Maybe you need to raise your Lasix dose to 80mg. I had raise my dose. Also, my druggist told me that after awhile (however long that is) that your kidneys figure out what to do with the Lasix and it becomes less effective. Get aggressive with your doctor - you don't have to put up with this. Good luck! Keep us posted. Blessings, Greta.
Jon's note: Since I retain fluid in my abdomen and face, I agree on all counts. Doctors really get me steamed on this one.

Robert, July 21, 2004 - Hi, I have a question, please. Does anyone else have blackouts or periods of prolonged time when they are in a dense fog and cannot remember anything? Do you have any idea what causes this? I get no answers from my doctors. Thank you.

Jim L's July 21 reply to Ann's July 20, 2004 - Hi Ann, I think you are dealing with a human condition. Your friends and family are like most humans and are terrified of death. I've run into the same thing with my family. They just can't confront death, even though this CHF doesn't mean we are on the immediate list. Best of luck, Jim.

Julie, July 21, 2004 - Hi, Can anyone from the Orlando area e-mail me with the name of a good cardiologist? One with a CHF specialty would be great! Thank you.

Sangeeta Bhagwat, July 21, 2004 - Hi, Please visit to read online, or download for free, "It's Your Life - A Practical Handbook for Chronic Ailments" written by a primary caregiver with over 13 years experience with hypertension, heart disease, chronic renal failure and other chronic diseases. I hope that you find the book useful.

Dale's July 21 reply to Jerri's July 20, 2004 - Hi Jerri, My dad had extreme nausea last year and spent 5 weeks in the hospital July of 2003. The doctors gave him medicine for the nausea and some worked but some didn't. He swears that ginger helped his stomach. I am not sure it will work but it is worth a shot. God bless with the heart transplant. Dale.

Bill's July 21 reply to Cathleen's July 13, 2004 - Hi, I know exactly how your mom feels. I found out a month ago I had CHF and I thought for sure my days were short. It's really scary to here your heart isn't working right, but tell your mom everything will be alright now that she knows what's wrong and is getting treatment for it. She will feel a little better each day. She will have good days and not so good, but she will be okay.

Elizabeth K's July 21 reply to Michael's July 20, 2004 - Hi Michael, I like The Nutribase Complete Book of Food Counts. I bought it at a Border's store. The book is the same size as an almanac, under $20, and lists fresh, raw and processed foods; and has listings for many franchise restaurants. Everything your ever wanted to know about a food is available at Go to "Food Composition." Best.

Donna H, July 21, 2004 - Hello, Usually I am around more but we have been on a roller coaster ride the last couple of months. Back in March we had a house fire that resulted in water damage to our house. Before we could get all the water out, it began to mold and my husband became ill. We thought it was related to the mold and not his heart disease.
     Even though he was at the emergency room several times, it wasn't until June that he ended up in the hospital. From then on, he has been in the hospital nearly continuously. He had "a little bit of collapsed lung and pneumonia" but the real problem was his idiopathic dilated cardiomyopathy.
     Doctors from 3 hospitals decided that he needed a biventricular pacemaker, an AV node ablation and an ICD. All of that was done but even before they did it they told us that it was only a stop gap measure until he could get a donor heart. The node ablation was successful and he is 100% pacemaker-dependant now. The second lead of the pacemaker couldn't be placed even though he was in surgery for 6 hours. The doctors decided that his heart wouldn't withstand another operation so instead we are focused on the testing for transplant.
     Now that he is being evalutated, they will give him dobutamine, which gives him temporary relief, but after a few days home he begins feeling ill, tired and weak. They are giving him Ompralazone (spelling ?) for the nausea and it helps slightly. He has been very irritable but refused to take the Valium they ordered until they told him that it might help him sleep. He tried it last night and I could tell a difference this morning!
     They tell us the evaluation will take about 6 months but they seem to be pushing it through as quickly as they can. Thank goodness he lost 70 pounds eating low-carb last fall and winter because that will help his chances for transplant.
     While in the hospital my husband told the nurses that he was sometimes seeing lights and sometimes had "holes in his vision." They checked his digoxin levels and told us that if the digoxin levels are too high, you can have vision problems.
Jon's note: I have never heard of a transplant evaluation taking 6 months! Usually, it's one week.

Roger's July 21 reply to Jim L's July 20, 2004 - Hi, What helps me to drain that extra fluid out is the doctor gave me a script for zaroxolyn, which I take 1/2 hour before my Lasix. Eating something will slow the process down and not drain as much. Works for me.
Jon's note: You're right. Don't eat for 2 hours before and one hour after, taking Lasix, and it will work almost 50% better. Demadex is not affected by food.

Sandy's July 22 reply to Sharna's July 20, 2004 - Hi Sharna, I'm so sorry you have to go through this with your brother-in-law. I was that sick at one time and luckily I did not have anyone to wait on me hand and foot. I had to take care of myself and wanted to, because I did not want to let my family know how sick I really was! I'm a bit older than Joe and have 3 adult children.
     You might want to get him to look into the computer/web and read this site. He also needs his brother to talk to him more and let him know how much he is loved and needed. He can't just sit back and let himself die because that is what will happen if he does not take care of himself.
     I'm sure you're a busy person and this is really starting to bring you down. He needs to take care of himself. You need to stop feeding him, etc. This is a sticky situation, with his feeling sorry for himself hurting all of you. Maybe your husband can find a group he can go to? Look into everything available, then tell him he "has to" go. Good luck to you and your husband and most of all, your brother-in law.

Lydia Moore, July 22, 2004 - Hi Everyone, It has been awile, but I read the site often. A week ago my Coreg was increased to another 12.5mg. That makes three 12.5mg pills a day. I feel a lot of aches and pains, and notice swelling in my hands, which I usually get just once in awhile.
     I have also been having a lot of tiredness and aches in the calves of my legs, and foot pain. Has anyone here had these symptoms and if so, what can be done for them? I would really appreciate some imput from any of you who might have experienced the same things. Love, and God bless all of you, and may you stay in the moment and make the most of ever day. Lydia.

Mary Anne, July 22, 2004 - Hi, This is to anyone taking Coreg. I have been started on 3.125mg twice day, then maybe up to 6.25mg twice a day next week. Jon mentions much higher dosages of Coreg in his article on Coreg and Toprol-XL. I need some clarification. Thanks. This is a great site!

Betty's July 22 reply to Julie's July 21, 2004 - Hi, I live in Florida from November through May, too long a time to go without a cardiologist. I see Dr. Mouaz Tawam at Mid-Florida Cardiology. Their phone number is 407-351-5384 and he has offices at 1099 Citrus Tower Boulevard (South Lake Hospital) in Clermont and at 10000 West Colonial (Health Central Hospital) in Ocoee. I know there is also a downtown office but I don't know where since I avoid downtown Orlando every chance I have.
     I have been quite impressed with his professionalism. He also will be very honest with you if you tell him that you want to know everything that is happening. His nurse Paula, is the greatest and keeps him organized. There are several doctors in the practice so you might tell them what you need and let them make a choice for you. I hope this helps.

Renee, July 22, 2004 - Hi, My name is Renee. I am 53 years old and was diagnosed with heart failure in March, 2003. I had the usual tests and was diagnosed with a stiff heart, no other problems. I took my meds faithfully for a year. Three weeks ago, I decided to go to a fat farm in Vermont to jumpstart my weight loss. In the middle of the night, I woke up unable to breathe well. I thought I was having a panic attack. Thank goodness someone insisted I go to the nearest emergency room since I was in heart failure again. By the way, the care in Vermont was excellent.
     I am now back in Philadelphia with a top cardiologist and we are going through the process of elimination to see what caused this (ultrasound, catheterization, stress tests, etc.) I am now on my meds every day: Beta-blocker, Lasix, isosorbide. I am also going to have gastric bypass surgery within the next 4 months to get rid of this extra weight. I also work with a complementary medicine doc connected with one of the big hospitals here on a regimen of vitamins and herbs (CoQ10, oils, hawthorne, etc.)
     My question is, does all this sound aggressive enough considering my young age for CHF? I just read of a 1999 study that was using Aldactone (spironolactone) with an ACE inhibitor for excellent results. I want to be as aggressive as possible so that I am still around to see my son graduate from college. Renee.

Lee R, July 22, 2004 - Hi all, I have called on you many times for help or prayers, and this is another one of those times. Does anyone have experience with taking dofetilide (Tikosyn)? I have an ICD and am having what my doctors feel are too many "episodes" and they have suggested a 3-day hospital stay to initiate the drug. Bestest to all of you and Jon, you are doing a fantastic job here! Hugs, Lee.

Angela's July 22 reply to Sandy H's July 16, 2004 - Hi, I recently have had a similar experience as you. In April and early May I had lots of tests and my heart was pretty bad. My cardiologist stated I would need either surgery or a transplant. Things were grim.
     One month into the ordeal - and I was sure my days were numbered - I had a cardiac cath. My doctor was surprised to find that my heart was functioning pretty well and all my pressures were good. My EF is back to 55%. I had surgery last year and it's been a roller coaster. My doctor took me off Plavix at my last appointment and when I see him in 4 months, plans on taking me off Cordarone. He cannot explain how I am doing so well so quickly but I just take it one day at a time.

Marvin, July 23, 2004 - Hi, It's been awhile since I've visited the web site. I am 73 years old and have an idiopathic dilated cardiomyopathy. I was training for my first triathlon almost 6 years ago when this was diagnosed. I was having trouble breathing on my runs. I receive excellent care at the University of Colorado Heart Failure Center in Denver. My pressure is very low and I have never been able to tolerate a beta-blocker. My EF is probably in the low 20s and I'm not able to do too much most days. I feel like the doctors are doing a good job with my meds, given the limitations. I am also having my records sent to UCLA to be evaluated for a heart transplant since we seem to be running out of other options.
     My question has to do with EECP. One of my doctors here in Boulder feels very strongly that I should try it. My doctors in Denver however, will not sign the consent form. They are concerned because I am on Coumadin and because I have had my defibrillator go off twice in the last months 4 or 5 months. I am on amiodarone and that was increased from 100 to 200mg after the last time my defibrillator went off.
     Has anyone out there tried EECP? How have the results been? I'd welcome any and all comments.

Linda, July 23, 2004 - Hello everyone, May God bless us all! I have chemo-induced arthritis, I guess. My hands are asleep right now, they are on fire a lot, I can't make a fist. When I wake up it takes a long time to get my hands working right. My shoulders, hips, knees, ankles and feet hurt too. Does anyone have this? If so, please let me know how you are coping with it. Thank you.

Roger's July 23 reply to Mary Anne's July 22, 2004 - Hi, They will work you up on dose gradually. I went a couple weeks for each level. There was 3.125mg, 6.25mg, 12.5mg and 25mg. I ended up now on 25mg twice a day.

Roger's July 23 reply to Lydia Moore's July 22, 2004 - Hi, I've been on Coreg 25mg twice a day now for about 3 years and only have a problem when I try to do a fast walk at work with steel-toed shoes on. There is a lot of weight there! When I walk with my walkers on, I have no problems. I think we do try to live life to the fullest - every day! I'm thankful to be here.

Carla's July 23 reply to Lydia Moore's July 22, 2004 - Hi, I can tell you that I went through the same thing. Every time they stepped up my Coreg dose, I felt crummy for about 2 weeks. I felt like I had the flu and retained more fluid. The doc said this was normal and your body is just trying to adjust. My best advice is to just give it time - and really watch your sodium and liquid intake.

Linda's July 23 reply to Lydia Moore's July 22, 2004 - Hi Lydia, I started Inspra at 25mg a month ago. It is supposedly similar to Aldactone. I have had bad leg aches, like when we were kids and Mom says we are growing. My feet hurt and are sort of weak. It is hard to describe. A heating pad seems to help some. I wonder if the new Rx has anything to do with it. Linda Oline, age 64, EF 25%.

Sandy's July 23 reply to Mary Anne's July 22, 2004 - Hi there, I too take Coreg. My doctor experimented a little in the beginning (took some time adjusting the dosage) and now I take 25mg twice a day. I also take it with a spoon of peanut butter. I feel great now and hope to keep it that way! Good luck to you!

Teresa's July 23 reply to Ann's July 20, 2004 - Hi Ann, You are not alone. I comfort myself with the thought that my friends and family do love me, but are not in a space in their lives to look directly into my illness, or my eyes. It helps me to turn this around and be the compassion I long for to someone else who needs it.
     Now that we know what this feels like - the loneliness, the fear - we can recognize it in others and be a witness to their suffering. That is all we really want or need, isn't it - a witness? I try (and usually fail) to imitate Christ but there are many other examples out there, some on this web site, that you can draw from. Peace and all good, Teresa.

Linda, July 23, 2004 - Hi, I am on Coumadin therapy for the next 3 to 6 months. Just what is good for me to eat to keep my protime levels right? I do not have CHF but had a blood clot in my lung a month back. I would really like some responses on this. I know what not to eat, but what is a good choice?

Tunny's July 24 reply to Mary Anne's July 22, 2004 - Hi, I was going to this doctor that started me out on minimum Coreg. This doctor didn't seem to be aggressive enough. I decided to do some serious research and found a very good cardiologist, which I thought I had. On my first visit to the new doctor, he put me on higher doses of Coreg, which turned out to be what I needed to start with. I had no negative reactions whatsoever and I am feeling good and living a good quality of life as long as I do not overdo. If possible, you probably should get your Coreg dose raised as soon as possible.

Larry, July 24, 2004 - Hi, I am thinking of joining the STICH trials. Does anyone have any input on this? (Jon's Note: This is "Surgical Treatments for IsChemic Heart failure trial - see or

Donna H's July 24 reply to Linda's July 22, 2004 - Hi, The doctors told my husband that it was best to eat a balanced diet to keep his levels steady. In other words, if you are used to eating a salad or broccoli every day, continue to do so but don't eat broccoli, salad, etc,..., for three meals one day then not at all for a week or two. He has been on Coumadin for 4 years and his INR stays very steady.

Pat H's July 24 reply to Mary Anne's July 22, 2004 - Hi, Coreg is a drug that needs to be titrated up somewhat slowly. Doctors generally start you off at the 3.125mg dose with the target being 25mg twice a day if you weigh less than 190 lbs. Some people tolerate it better than others.
     I started out at 3.125mg back in March and just hit the target dose a week and a half ago. If I went up too fast, the shortness of breath and fatigue was wicked. Your doctor is being smart in starting you off low with increases every few weeks (and that is generally the way they all do it). Why not ask him about this when you see him again?

Marly's July 26 reply to Mary Anne's July 22, 2004 - Hi, I have IDCM, EF of 25%, and have a BiV pacemaker. I attempted unsuccessfully to start Coreg twice in the past 2 years and failed to adjust. I am trying now and have been on 6.25mg BID for about 2 months but got severe edema and SOB and have reduced it last week to 3.125mg BID. I am not giving up.

Vicki J's July 26 reply to Mary Anne's July 22, 2004 - Hi Mary Anne, I also take Coreg. I started with the low doses and worked up to 25mg twice a day. Then my CHF doc tried 37.5mg twice a day to slow my heart rate but after several months we found that it didn't work so he lowered it back to the 25mg twice a day. I also found that the higher dose made me gain weight and raised my glucose level to an extremely high level. I ended up taking several 100 units of humalog every day. When the Coreg was lowered, my blood glucose returned to almost normal. Right now I'm not taking anything for it, just watching my diet.

Mary Anne's July 26 reply to Lydia Moore's July 22, 2004 - Hi, I did notice when I started Coreg that I had leg pain but it seems to have gone away pretty much. I had some cramping in a calf muscle too. Since I take a lot of meds, it's hard to pin down the exact cause.

Mary Anne's July 26 reply to Linda's July 23, 2004 - Hi, Donna's advice to you was exactly right. I've been on Coumadin 4-1/2 years. It's better to eat a regular amount of greens most days. You should have received a booklet on the drug when you were started on it. It's helpful because it gives you amounts of different foods in the "green" category to eat.

Lori K's July 26 reply to Linda's July 23, 2004 - Hi Linda, Do you have CHF from your chemo as well as chemo-induced arthritis? Your symptoms sound more like peripheral neuropathies, which are a common side effect of many chemo agents. Numbness and burning can be signs of neuropathies. Check with your doctor on this.
     How long ago did you get chemo? Sometimes these symptoms go away in time, so hang in there. I know it's hard to sort it out when you have several different problems. Take care, Lori.

Fran, July 26, 2004 - Hello Jon, This may not be the proper forum to request information, but you were the first I found in my search. Friday my doctor did an EKG and found that I had borderline enlarged atrial (?). She said I will be scheduled for a cardiologist exam. Big surprise for me. I do have sarcoidosis and have been keeping an eye on the spread throught my lungs, which seems to have abated this year, no worse and no better. I feel fine with the exception of never getting a good night's sleep. I have been a vegetarian for over 20 years. I take my vitamins. I was a runner until 1992 but am still active. I walk daily 20 to 30 minutes followed by a 15 to 20 minute swim. At break time on week days, I walk or do weights. The guy down the street definitely has CHF and is terribly obese and eats everything in sight and does nothing but play computer games. I have worked so hard to take care of myself. My question is, "Just what should be done with or for a borderline enlarged atrial something? It's been too many years since biology. Thanks, Fran.
Jon's note: Feel free to ask me after the cardiology exam. With the current information, I don't know.

Henry T, July 26, 2004 - Hi, Two years ago I went on 200mg amiodarone (Cordarone) daily after my ICD fired due to an intense bout of a-fib. This past week I was taken off the drug due to depressed pulmonary function tests - one of amiodarone's many possible side effects. I'd like to hear from any others who suddenly went off amiodarone and what their experiences were like. Wishing everyone all the best.

Robert, July 26, 2004 - Hello, I need help and advice. My blood pressure remains way too high. I am currently taking 40mg accupril, 160mg Lasix, a baby aspirin, 40mg lipitor, and one mg Xanax and other antidpressant meds as needed. I tried Coreg and it made me suicidally depressed. I have post-traumatic stress syndrome and bad depression since serving in the Marine corps during the Vietnam era.
     An echo showed a severely damaged left ventricle but my valves were okay. I cannot do much anymore in terms of walking and climbing stairs and the like. Any ideas will be helpful, as my cardiologist is stumped. He is supposed to be a CHF specialist. Does anyone have any ideas, please? Thank you.

Greta, July 27, 2004 - Hi all, Well, I did the sleep study thing. What an experience! It would take up too much space for me to share the whole goofy story. As it turns out, I do have sleep apnea in addition to snoring. My husband could have told them that. So now I am fixed up with a CPAP machine and nasal pillows-type breathing apparatus. That is the hardest thing to get used to, it irritates me, but I do sleep better and wake up feeling much more refreshed. I actually have a little better energy level.
     I know some day I will, hopefully, reach the point where I get used to the headgear aparatus. If any of y'all that are veterans with a CPAP and have any suggestions for a greenhorn, I would appreciate your input. Thanks. Blessings, Greta.

Karen K's July 27 reply to Fran's July 26, 2004 - Hi, I'm not sure I've ever seen it mentioned here but when I was first diagnosed in 1991, one of the questions my doctor asked was, "Are you a vegetarian?" I don't mean to suggest this is what caused your problem but perhaps you might want to look for other posts here and talk with your doctor. Karen K.

George B's July 27 reply to Henry T's July 26, 2004 - Hello Henry, I have gone off amiodarone (Cordarone) twice. The first time, my doctor reduced the dose and several times to taper off. The second time I was at 200mg and I stopped cold turkey. It has been just the same for me. I feel fine.
     I started it the second time because I went back into a-fib. After almost 2 years, I wanted to get off it because of the long term risks. My doctor agreed. I have been off amiodarone since May of 2004, and I have been doing fine. I have to have my pulse taken daily to see if I am staying out of a-fib. Good luck. George B.

Sherry R, July 27, 2004 - Hi, I don't know if this is where I need to be or not, I've not had much luck at this either with response back from other sites. My sister is 47 years old and she has just been diagnosed with heart failure. She's at class 2. Her doctor has put her on a couple more medications and inhalers to try to help her but she has no insurance so her doctor says she needs to have an angioplasty done but without the money upfront (3500 to 5000 dollars US), no specialist will see her in case they go in to to do that and it happens that she needs a stent or something because then the cost could be 30,000 US and the money wouldn't be there.
     She has a lot of trouble breathing now, wheezes a lot, has very high blood pressure, and has bad swelling of her feet and legs. I don't know if what I'm even telling you, you need to know, but I just want to try and find out where to get her some help.
     Is there anyone out there that knows of any programs that could maybe help her? Her doctor did say if she went to the hospital with bad chest pains they would have to help and couldn't turn her away, but we don't want to wait till it gets that bad.
     As you can tell, she's not from a well-off family. We sure wish we all could help her, but it's hard. We work and live paycheck to paycheck. She's unable to work because she has custody of her 2 granchildren and the youngest one was born with RSV. She tried putting him in daycare and there are too many germs and she ended up in the hospital with him a couple of times. He has to have breathing treatments quite often.
     Sorry, I don't mean to be rambling on about all of her problems, but I would like to be able to tell her where to maybe go to get help. She lives in Auburndale, Florida, which is between Tampa and Orlando. Please email if you have any ideas at all. Sincerely, her sister, Sherry Ransom.

James, July 27, 2004 - Hi, For those who are struggling with the cost of medications - really any meds, not just for heart failure - know that most pharmaceutical companies have programs in place to help those who need assistance with getting meds: is a site that has information on how to contact companies for this assistance and it's all organized by the names of medications, by brand name or generic name.
Jon's note: For many more links to meds assistance, see

Belle, July 27, 2004 - Hi all, My mom got tested for uric acid level twice two weeks apart and it's been elevated both times, although she has no joint pain. Her creatinine and BUN are also slightly elevated. Her doc says it's from the diuretics she takes: 50mg Aldactone and 80mg Lasix daily.
     Would these plus the fluid restriction cause one to be dehydrated? These drug doses were increased after her last bout of decompensation which was last May. Prior to that she was on 25mg Aldactone and 40mg Lasix. She is now well compensated. The doc suggested allopurinol.
     Are these abnormal tests only temporary or will it get worse if she continues on diuretics? Would reducing the diuretics help get it back to normal? Has anybody here experienced the same thing? I am more worried about the abnormal kidney test results. Thanks a lot for any responses.

Angela's July 27 reply to Henry T's July 26, 2004 - Hi, What other meds are you on? My doctor is taking me off Cordarone at my next visit. I am doing better and I am also taking other meds that don't require me to take Cordarone before. I would search the med and your condition. You may be taking something else that does the same thing.

Angela, July 27, 2004 - Hi, Is there anyone out there who sees a doctor in Las Vegas, Nevada? I would like to hear from others in the area with CHF or similar conditions. Thanks.

Steve H's July 27 reply to Henry T's July 26, 2004 - Hi Henry, You may find out in about 6 weeks. I was taken off amiodarone after 3 years at the same dosage you were taking. I do not have an ICD. The doctor said he wanted to see if this would relieve some of my side effects and we mutually agreed. After 6 weeks I went back into a-fib. He said that 6 weeks is about the amount of time for the medicine to get out of your system.
     After a few days in the hospital getting my amiodarone level back up I went back to normal. My doctor and I both agreed at that time I will live with the side effects of amiodarone since for me it beats a-fib. You may have different results because of your ICD. I hope so. Good luck. Steve.

Marti K, July 27, 2004 - Hi, I have been diagnosed with heart failure. My EF was 10% when they found it. I now come equipped with a biventricular pacemaker. Here's what I don't understand: When they say your blood tests show you're going into heart failure, what are they talking about? I mean if you have CHF, can you go into heart failure multiple times? Is it whenever you show the symptoms? Any help understanding would be appreciated, thanks.
Jon's note: Does the second paragraph of The Manual help at all?

Deb, July 27, 2004 - Hi, I hope someone can give me some insight. I've had "cycles" for the last 3 years where I get dizzy, have palpitations (120+ heart rate) and trouble with balance and extreme fatigue. I had an echo stress test in 2002 that showed 34% EF, but just had another and my EF was 50% - but I'm back on cycle again! It's so frustrating. I'm age 45, female and not overweight, and basically a type A personality. Any thoughts? Am I wacko?

Nora, July 27, 2004 - Hello, I am a 53 year old woman who has had 3 heart attacks, a 3-way bypass, emphysema, renal failure, diabetes, and was just diagnosed with diastolic dysfunction. I don't have a cardiologist at the moment. I lost mine by him going out of state. I read this site almost every day and it is so interesting. I have also read The Manual and the info for everything at least, once maybe more.
     Okay, I had an echo and it said, diastolic dysfunction with a hyperdynamic EF of about 70%. When I was released from the hospital a few weeks back, they took me off all meds except ACE inhibitor, Lasix and a calcium channel blocker, and of course no other info. I have severe SOB, nausea, bloating in my stomach, and angina. I don't have a lot of leg or ankle swelling. I don't know if the SOB is from the emphysema or the other conditions I have been diagnosed with. Dilated cardiomyopathy last year put me in the hospital for about a month. I also have high blood pressure.
     What I want to know I guess, is where do I go from here? I would appreciate any ideas or opinions. Thanks in advance. Nora.

James' July 28 reply to Greta's July 27, 2004 - Hi, I've been using CPAP now for a little over a year and a half, I guess it's been. I had a bit of a jump on most as I studied these things in college. :-) A couple of tips:

  1. In colder weather, either insulate the hose from the machine or at least put it under a blanket. This will prevent condensation.
  2. Use your humidifier - you'll be glad you did and so will both your mouth, throat and sinuses.
  3. When going to sleep, put the tip of your tongue just behind your upper front teeth and give a slight suck. This helps many folks keep their mouths closed during the night.
  4. Change your foam and HEPA filters regularly.
  5. Have the unit's pressure tested every so often to ensure it is performing as it should.
  6. If you're married, get your spouse to help you keep the mask on. Eventually you will start taking it off at night, so a spouse to wake you up and help you get it back on is a big help!
  7. I sleep with a small fan clipped to the headboard. It helps drown out the sound of the CPAP and even the flow of air out of the mask.
  8. If the air coming from the unit is very cold, the intake may be near a source of cold air (vent, open window). You may need to move it.
  9. If you get water on your nose, it's probably condensation. Read the above note on insulating your hose and you should be fine. You may also have overfilled the water reservoir on the humidifier.
  10. Last but not least, keep a glass of water by the bed for those occasions you awaken with a dry mouth. If your lips dry out, consider using some Chapstick or something similar when going to bed.

That should help get you underway.

James' July 28 reply to Sherry's July 27, 2004 - Hi Sherry, Your first step needs to be to read The Manual. Secondly, she needs to take responsibility for her own health care! I cannot emphasize this enough. Get her in here, let her read the messages and pages, maybe even print them off for her. Get her to the library if she does not have her own computer and get her researching heart failure and its treatments. She needs to learn about what's happening to her body and what her options are to survive.
     Lastly, your sister needs to get on a low sodium, fluid restricted diet immediately. This means not more than 2000mg of sodium and not more than 2 liters of fluids (including soda, juice, tea, coffee, and so forth). Sodium is a bad 'un for us CHFers as it really helps that whole water retention thing get off the starting line, and this is of course what's swelling your sister's feet.
     She may want to start looking into Social Security, disability benefits, and the like. After a period, she'll qualify for health care. Social Services may be able to assist as well. Remember, if your sister does not take an active role there is nothing you can do but continue to encourage her. Be there for her, give her the information she needs, and show her the options available.

Mary Anne's July 28 reply to Deb's July 27, 2004 - Hi, Stress, caffeine intake, decongestants (such as Sudafed), some diet pills, etc,..., can cause the effects you describe. Even too much chocolate can do it. Mary Anne.

Sherri's July 28 reply to Henri T's July 26, 2004 - Hi Henry, I have a family member who was on 200mg amiodarone (Cordarone) and the side effects were a bit much. They have been fine since being taken off the drug. Do you have a BiV pacemaker? My understanding is that this can help with a-fib. There was a short article in the New England Journal of Medicine (2003 I think) about someone taking amiodarone who suffered lung toxicity and then went on a BiV pacer to help with the a-fib.

Marti's July 28 reply to Jon's July 27, 2004 - Thanks Jon, Your info was a big help! I read your site, the info about you, and was amazed that you and others feel the same as I do. I'm now 43 years old, was sick a little over a year, misdiagnosed several times before they found the problem and by that time I was in serious trouble! The first doc, my primary, said I didn't fit the profile so he never thought to check.
     When I had the pacer put in, my left lung was knicked and collapsed 3 times - it was a nightmare! I did talk my cardiologist into letting me try to work. I made it from last September to July. I was a machine operater working a 6-day swing shift, making products for Hefty. I didn't want to give up. I worked extremely hard to get where I was and the respect from the male dominated work place.
     Now I'm at a loss. I'm having a really hard time thinking about and knowing my doc says I can't go back there. He says it's time I get on disability. Any help for the mental side? Thanks, Marti.

Sarah, July 29, 2004 - Hello, It has been a very long time since I have posted here. I wanted to post to let everyone know who might remember that Al, aka "texal" died this week. He had heart failure for many years and was very involved with this site a number of years ago. It is sad to see a bright, attractive man with an outstanding knowledge of history leave us at the age of 60. I met him here at Jon's in 1998 during a chat and we have been fast friends since, even though we lived far apart.
     For those of you who might remember me, I had a heart transplant in 2002 and have done reasonably well since then. I will check back for messages any of you may have, questions too. Thanks, Sarah.

Sandy's July 29 reply to Sherry R's July 27, 2004 - Hi Sherry, Take your sister to Social Security right away to apply for disability. If she qualifies, they will help her. I live in Florida and did that exact thing and am now being helped by SSI. Good luck!

Sandy's July 29 reply to Marti K's July 27, 2004 - Hi Marti, Yes, when you have symptoms, you are "in" heart failure. Since my doctor set me up on a great cocktail of meds, I am not not "in" heart failure but "have it" none the less! I was told, "Never go off your meds." I have picked up my EF from 12% to 25% and I feel so much better now! Good luck to you.

Sandy's July 29 reply to Marti K's July 28, 2004 - Hi Marti, We all have to make huge changes in our life styles, from the food we eat to friends we have been accustomed to running with. Our business or jobs are a huge part of our lives and at our ages, having to give them up, well, it's not easy! However, we must and we must find a new way of life for ourselves.
     My heart failure came just as my last child left home and I have had to learn to not be a mom, not work anymore, not do a lot of things because I'm so tired all the time! Now that I've found so many new things to do being on disability is not so bad anymore. You will get used to your new life. Just try really hard to laugh and love, and it will all be just fine. Best of luck to you.

Hal, July 29, 2004 - Hey everybody, I hope all are as well as can be expected and enjoying the summer. Well, I finally moved out of California to begin a new life in Arkansas. Sadly, the new life isn't going to be a long one. I was told by e-mail from the Garland County Human Services office that because of the fact that I have collected SSD for 2 years straight that I would be eligible for Arkansas Medicaid. What I didn't know was that I have to have Medicare plan B. I refused plan B in favor or Medical and guess what? No one will even sell me meds.
     I will be eligible for Medicare plan B next July. Now I can deal with that. I can get a part-time job and pay the $200 a month for 11 months. The thing is that no one will write me a script. Pretty funny, huh? I've been everywhere. I will run out of meds next Monday and will have to beg another doctor at another ER for a few pills at an outrageous price.
     So beware, folks. Check and double check before you move. I'm just wondering how long I can survive without my meds. It looks like I'm going to find out. Health care? <lol>

Jon's July 29 reply to Hal's July 29, 2004 - Hi Hal, I am sorry to hear you are having troubles. Honestly though, I'm not sure what your trouble is. Why would your insurance coverage affect a doctor's willingness to just "write" a prescription? My wife and I discussed this and we don't see the link between Medicare and obtaining a prescription, unless you can't afford to see a doctor to get one. Is that the case? Jon.

Paul, July 29, 2004 - Hi, I am a 38 year old male who found out he has heart failure. I live in southern New Jersey and I am looking for support groups. If anyone has any input, please let me know.

Kathy H, July 29, 2004 - Hi, I am wondering if anyone else is dealing also with rheumatoid arthritis? I am now on Plaquenil, prednisone and methotrexate, and I am still exhausted. What do you do when fatigue is the hallmark of 2 conditions?
     My cardio doc said I was tired because I'm not getting enough exercise. I'd like him to chase a toddler and keep up with me. I guess I'm just asking: When does the fatigue go away and how do I learn to relax? Ummm, what is relaxing?

Cary Deen, July 29, 2004 - Hi, I learned that the diuretics you are taking for CHF increase your uric acid levels. Increased uric acid levels can bring about gout. Normally the joints of the big toes are the first to show symptoms of gout. I was limping around for a week before I was diagnosed by my CHF specialist. The medication I received remedied my situation within a week. I just thought you would like to know. Take care.

Chelsie, July 29, 2004 - Hi everyone, I went to the cardiologist and she told me that I am now allowed to start walking, but only for 15 minutes and 3 times a week. I am getting ready to start high school, and the school doesn't have lockers. That's goning to be an adjustment for me. <g>
     My parents and I are hoping to not have to deal with the teachers and other staff not wanting to let me do what is needed. I will update futher as I get more info. Oh yeah, when I went to the cardiologist, she also said that my murmur sounded softer than the last visit. Bye all, Chelsie.
Jon's note: It's good to hear from you!

Greta's July 30 reply to Paul's July 29, 2004 - Hello Paul, Welcome. You have probably found one of the best cyber support group forums that exist. All of us are in the same boat, some of us a little worse and some of us a little better. We all have one thing in common, CHF.
     You are probably looking for a tangible support group in your area, and I'm sure someone, if not several, who post to this message board can help. I would, but I live in Arkansas. All of us are always here and ready to listen. You can also send a personal e-mail to anyone and find a listening ear. Be sure you read everything, and I mean everything on this site, beginning with The Manual. You will find no better, or more concise information than what is recorded here. Blessings, Greta.

Greta, July 30, 2004 - Hi all, I need some input. I don't know if I am imaging things or just creating my own breathing problems caused by anxiety, like the ER doctor says. I have read all the posts discussing fluid retention that is not necessarily noticed by "squeezing" the ankles. I have had mine squeezed and told I was not retaining fluid but I swear it is there. My midsection feels heavy and I have periods of SOB after only a little activity.
     This is different, because this time last year I didn't have this problem. My chest also feels heavy and at times my breathing is labored. Yet, supposedly I am doing fine. I do watch my sodium intake and take 80mg of Lasix daily. I saw my CHF doc July 1st. He said I was doing fine, my blood pressure was good, chest and breathing sounded fine, and he would see me in 6 months and do an echo.
     Am I whining? Is this typical CHF symptomatology?

Charles, July 30, 2004 - Hi, I had my heart attack visiting in Houston last November (2003). I had excellent care in placement of stent and angioplasty. I returned back to northwest Florida in January and was quickly hospitalized for pulmonary edema (fluid in my lungs). The doctors here are pathetic, tell me nothing no matter how much I ask and am tested.
     Can anyone please recommend a physician in Pensacola or Milton (cardiologist, internist, nephrologist - whatever) who is savvy, tells the score, and might be on my union's list? The charlatans I am seeing have offices in Fort Walton, Crestview, and DeFuniak. I have learned more from reading this site since discovering it yesterday than I ever heard from the overpaid quacks taking my bucks.
     I am fighting breathlessness, insomnia, foot cramps, fatigue, and depression. I am on 12.5mg Coreg twice a day, torsemide, plavix, Zocor, diovan 360, plus diabetes meds and mucho vitamins and supplements. Does anyone else try to measure salt content with the little electric probe? I am a 60 year old, fat retired actor and writer.

Hal, July 30, 2004 - Hi again gang, There seems to be some general confusion regarding my last post. Basically the state can't help me because I do not have plan B. The free clinics can't help me because I have plan A. Somehow I have to convince just one doctor to be my doctor so I can get my meds and I'm having trouble doing that.

Jon's July 30 reply to Hal's July 30, 2004 - Hi Hal, If you can afford one doctor's visit, you can get one year's worth of prescriptions (one 90-day rx with 3 refills). Why Medicare is an obstacle to one doctor visit is what I don't understand. You phrase it as though you "can't" see a doctor but even if you have to pay for one office visit, you should indeed have no trouble getting those prescriptions. Paying for them may not be so easy, as we all know. ;-) Jon.

Sandy's July 30 reply to Sarah's July 29, 2004 - Hi Sarah, I am so sorry to hear about Al. How nice that you became such a good online buddy to him. My prayers go out to you both.

Marti's July 30 reply to Sandy's July 29, 2004 - Hey Sandy, I just wanted to say thanks for the input and encouragement. It's nice to know that there are people out there that actually know what it's like! I just, I was an extremely active person physically as well as mentally. I don't know. Anyway, thanks.

Susan L, July 30, 2004 - Hi all, I just need to vent. I received a letter today from Social Security stating that I do not qualify for disability benefits. The letter states "this is because you are not disabled under our rules" and continues "we have determined that your condition is not severe enough to keep you from working." I have an EF of 15% and am on enough meds to ensure that I remain exhausted.
     I plan to hire an attorney and appeal but in the mean time, I am ticked off. I have also applied for a disability retirement pension from my employer. The company's board votes on that in August. I can only hope they are more humane than the federal government. Thanks for listening.

Joy, July 31, 2004 - Hello to Jon and everyone, I have just found you. I am 59, seriously obese, and have just found out that I have CHF. Various tests for a more accurate diagnosis are pending. I have been on SSRIs (Prozac, Aropax) for chronic depression for many years and have found that many regular meds seem to negate the good effect of SSRIs for me and I become acutely suicidal. Do any of these ACE inhibitors and beta-blockers make depression worse?
Jon's note: Beta-blockers can worsen depression. When on anti-depressants, always talk to your doctor and your pharmacist before taking other meds.

Donna H, July 31, 2004 - Hi Jon, I think the reason that testing for my husband's heart transplant will take so long is because he is going through the Veterans' Administration. Since he only has Medicare part A and B, the other hospital told us we needed to come up with about a quarter of a million dollars and we couldn't do that. I talked with another woman whose husband is on the transplant list at the VA. She said that he started in October of 2003 and was put on the list in July of 2004. It sounds like an eternity but we are just grateful that we have this option.
Jon's note: Medicare (if you have both parts) does pay for heart transplants so maybe switching to a Medicare-approved transplant center that accepts Medicare patients would speed up the process a lot.

Cathleen, July 31, 2004 - Hi everyone, First of all I want to say thanks to those who have contacted me and my mom (Cecelia) over the past 3 weeks. She was diagnosed with heart failure July 8th and has since had an echo done and a cardiac cath, which left her knowing that she has no blockages. Her CHF apparently came from a virus in her heart. Her EF is 20%. She will need to be on her meds forever. They put her on a beta-blocker and told her that in 2 to 3 months she will need to come back in and they will do an echo to see if her heart is better, the same, or worse. I'm told by her doctor that 1/3 get better, 1/3 stay the same, and 1/3 get worse. If she stays the same or gets worse, they will put in a defibrillator as a precautionary measure.
     Now mom is getting to be more optimistic as am I. She's feeling much better and can do much more than she could in the weeks before diagnosis. Her cardiologist seems to treat this if it's nothing horrible, just a run-of-the-mill occurance. I have read that anyone with CHF should have a CHF specialist. Is her cardiologist specialist enough? Should she seek a specialist? Also, she has a meeting with the SS disability office on August 13th. Both her cardo and her PCP have told her that she should be on disability. It's been made to seem that this will be a breeze, that she will apply and she'll be on it within a month.
     I've heard horror stories from 2 close friends who have husbands on disability. It took them a minimum of 2 years each even after they hired a lawyer. However, they both had back pain and maybe this is different. If anyone knows any info they can share to speed this up, it would be great! Her current employers aren't happy at all that she has had to cut back to part-time (working from 9 to 2) and have been making it very difficult to work there for her. They gave her job to someone else and are making her do busy-work sitting on plastic chairs and having to hold papers in her lap rather than providing her with a desk like she had before. She's stressed about this, and has to work. She's divorced and still has my brother at home with her, and has a house payment and all the bills we all have as well.
     Keep her in your prayers, as she keeps everyone with CHF in hers. You are all amazing people and I've learned so much about CHF and about compassion from several of you! Thanks again, Cathy.

Jon's July 31 reply to Cathleen's July 31, 2004 - Hi Cathleen, I'm glad your mom is feeling better. Now, the old-timers around here are going to recognize this little speech. <g> Please understand that I am trying to educate you, your mom, and all readers here. This is not scolding you personally in any way. I speak from lots of study, personal experience, and more anecdotal evidence than any one person ought to have on the topic of heart failure and its treatment.
     Get a heart failure specialist and do it now. Do not accept device implant until she has seen a CHF doc, meaning a cardiologist whose practice is at the very least 51% CHFers. Some people do fine without one - don't count on it! See The Archives for others' experiences.
     One reason why is that virus diagnosis you received. Unless a heart biopsy was done during the cath, heart tissue sent to a lab, and then antibodies to a known virus found in that heart tissue, there is no way to know a virus was in any way involved! Lots of docs toss off that line about a virus because they can't say those 3 little words: "I don't know." A doctor who can't say those words is not a good doctor to have. Think about it. If there was no biopsy result like I mention, he just lied to you - he made up a cause for her heart failure with no proof of it. That's called playing Russian Roulette with your mom's life. Once he writes off the cause, any other possible cause - that may be treatable - will not be explored. Be sure you also know whether she has any diastolic heart failure - it can matter.
     Doctors and nurses have no business saying anything at all about your chances at disability. Why not? Because they are totally clueless. I heard that same story about it being a breeze. At the time, my EF was 13% and my Vo2max was 13.5. My SSD application was refused and took over a year to get - we went broke. I am not saying this will happen to your mom; supposedly SSA has improved their SSD process. I am saying that no doctor knows squat about the way SSD works, so don't rely on their opinions. Read the SSD page and get a letter like the one described, and make sure that exact wording goes to SSA from the doctor - get a copy of his letter before he sends it and make him change it if it doesn't read that way. Tell her not to quit work until she talks to either SSD people at SSA or a lawyer, and to get a second opinion before taking action when dealing with lawyers.
     The final analysis is that neither she nor you nor any of us should rely on what other people say - and that includes me! Go to the source. For SSD info, go to SSA or to a lawyer who does nothing but SSD. For drug info, go to a pharmacist, then your doctor, then look it up yourself to be sure! For medical info, go to a doctor, then double-check everything yourself as well. You cannot afford to accept possibly wrong information when it concerns your mom's heart and life - check, double-check, triple-check everything.
     Make sure she needs an ICD before getting one implanted. Get a second opinion! This is her life we are talking about. Getting an unnecessary device can be as bad as not getting a necessary one! Well, I guess I've gotten myself worked up enough now. <g> I really get steamed about medical professionals being glib about our lives. Jon.

Tunny's July 31 reply to Charles' July 30, 2004 - Hi, You are not as fat as you think you are. Hang in there and onto this site. You will get good help and info. It is good to hear from you. A good doc will probably do a little better with your medicine.

Greta's July 31 reply to Charles' July 30, 2004 - Hello Charles, I am sorry you are having such a time with doctors in Florida. Sometimes I think part of med school qualifications is to be a bonehead. Every once in a while though, they do turn out some top notch MDs.
     The place to look for one in your area is on this site. Jon has done all the leg work - you just need to click on a link on the home page; it is under "CHF Treatment" and is listed as "Find a CHF specialist in your area." If none are listed, keep looking till you find one. I know it is tiring just thinking about it, but if you find the right doc it will have been worth it.
     Since you say you are a retired writer, please overlook my poor sentence structure and punctuation. As for being 60 and fat, I don't think you are by yourself. Those of us with CHF range from our 30s to... I am also overweight. Less heart function means less air, which means less energy, which means added weight.
     The only way I measure sodium is by what is listed on the box, can, carton, etc. It will also help to find a book that lists foods and their sodium content. Jon also has some links on this site that might be of help in that area. Hang in there, you are not alone. Blessings, Greta

Greta's July 31 reply to Susan L's July 30, 2004 - Hello Susan, I am sorry you are having problems getting disability. I got the impression from your post that you are still working, yes or no? If yes, that may be why you were denied. They may figure that if you are able to continue working, then you are not disabled enough to require disability. Hiring an attorney is your next best bet. Find one who specializes in disability denials. I don't know about rules where you live, but here in Arkansas hiring an attorney for that purpose does not cost you a thing. Good luck. Blessings, Greta.

Sandy's July 31 reply to Marti's July 30, 2004 - Hi Marti, My pleasure. As you said, there are people out there that know what you're going through. Just remember you are sick but that is no reason to "act" sick. I do rest, when I know I can't continue each day, but I get up and try again. In fact, I just signed on the John Kerry Bandwagon in my town. I can pass out flyers or something, just to be with other people each day! I refuse to give in to CHF and sit home. Good luck to you!

Mary Anne, July 31, 2004 - Hi, I read the list of CHF specialists and there are none listed for the Pittsburgh area. I can't believe this, as we have outstanding heart care programs at both UPMC and West Penn as well as Allegheny General Hospital.
     Is anyone out there from the Pittsburgh area seeing a specialist they like? I live about 20 minutes north of the city, but can drive. Thanks.
Jon's note: Yeah, they have to volunteer a listing. Anyone who would like their own CHF specialist listed on site, please ask them to do it!

Yvette's July 31 reply to Greta's July 30, 2004 - Hi, You are not making it up in your head. I sometimes will have a heavy feeling on my chest also. It is usually from excess fluid. You can have water retention anywhere in your body, not just your hands and legs. I've noticed that I will feel the extra water around my midsection before my legs swell. At those times I tend to be a little more thirsty also, not a good sign.
     The best way to tell if you have water retention is to weigh yourself in the morning, then when you have that heavy feeling check your weight again. As for me, my doctor said it was okay to add an additional dose of my water pill. Check with you regular cardiologist.

Joy's July 31 reply to Greta's July 30, 2004 - Hi Greta, It's wonderful for me to read your comments about edema and ankle squeeze! I thought it was just me! My lower legs - knee to just above the ankle - were swollen and painful, plus I had SOB and chest pain. The med staff said my ankles were fine when squeezed, therefore I was okay. I knew I was not. Of course I am obese and the staff put my large abdomen down to the obesity. They were too casual in my opinion. I am a newbie and not fully diagnosed, and I think this message board is marvelous. Joy.

Susan L's July 31 reply to Greta's July 30, 2004 - Are you whining? No, you are trying to get a good reading on your condition. I can wholly sympathize with you. I am thinking what you are experiencing is par for the course with CHF. High humidity can make the symptoms worse. My cardiologist checks my ankles and says I am doing fine too. This last time, he never even listened to my breathing. I don't go back for 3 months. Meanwhile I have pointed out the same concerns you have and experienced swelling in my abdomen.
     I am ready to shop for a new doctor and am scoping one out now. I think some doctors believe some of our symptoms are psychosomatic and if they tell us that we are all right, we will be all right. Don't let them make you feel like a hypochondriac. Thank heavens for Jon and this site.

Roberta's July 31 reply to Greta's July 27, 2004 - Hi, I haven't been around much, but I wanted to put in my two cents on the CPAP experience. I had my own sleep study tale to tell back in May and June. Well, now I've been on the machine for 3 weeks and I go back to the sleep study center for my 30-day follow-up this coming Friday. During the study I used the mask but when I was outfitted with my equipment, the tech took one look at me and said two words: "Nasal pillows" like I had a clue what those were! Anyway, she said my nose was small and that's why the mask didn't work so well for me during the study, plus I'm a side sleeper too.
     The thing is, I'm not noticing much change in my energy level. I saw my PCP after 2 weeks on CPAP and he seemed surprised when I told him that my SOB and symptoms were pretty much the same. I think there has been just a teeny-tiny bit of increase in my energy level but nothing like where I want to be. I still find myself yawning my way throughout the day at work which when I think about it, I'm blessed that I can still work at present, even though some days are a real test.
     Meanwhile, I guess I'll just have to allow more time and adjustment to the CPAP therapy for now while my PCP tries to rule out some other issues that may account for my fatigue.

Mary Anne's July 31 reply to Linda's July 23, 2004 - Hi, There's a good site on the Internet at where you can check for interactions between your meds and for side effects. I wish the doctors would trust us enough to give us the package insert. Usually the pharmacist will give it to you if you ask. I guess they think we're so suggestible we'll imagine we have all the side effects. As if we aren't dealing with enough of them as it is! ;-)

Bill C's July 31 reply to Sarah's July 29, 2004 - Hi, I'm so sorry to hear about Al. I also had the pleasure of chatting with him. Are you the Sarah that had the waterskiing accident? God bless and take care everyone.

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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