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

Nancy S' 9-16 reply to Kathy H's 9-15     rheumatoid arthritis and CHF
Elizabeth K's 9-16 reply to Lori K's 9-15     and to Giorg about ICDs
Mary Anne 9-16     Coreg was not the drug for me
Carla 9-16     how long till meds have an effect?
Russ B 9-16     how important is the atrial lead in pacer?
Amy 9-16     update on EF, meds, heart rhythm
Janice 9-16     seek CHF doc in St. Louis, Missouri, USA
Ron 9-16     should low blood pressure worry me?
Ann L's 9-17 reply to Kathy's 9-15     prednisone experience
Cathleen 9-17     update on my mom
Amy's 9-17 reply to Jon's 9-16     thank you for the note
Bill 9-17     cut my Coreg dose & feel better
Elizabeth K's 9-17 reply to Ron's 9-16     pulse, blood pressure & rehab
David Wilson's 9-17 reply to Janice's 9-16     heart failure do in St. Louis
Scott Brown's 9-17 reply to Ron's 9-16     low blood pressure
Scott Brown's 9-17 reply to Carla's 9-16     exercise is really important
Scott Brown's 9-17 reply to Mary Anne's 9-16     Coreg
Lisa 9-17     seek ICD battery replacement experiences
Shane 9-17     thanks to all
Gloria 9-18     I have lots of questions
Valerie R's 9-18 reply to Carla's 9-16     looking good, varying medical advice
Bob L 9-18     seek meds cost assistance info
Barb N 9-18     seek CHF doc in DC-Virginia, USA area
Roger H's 9-18 reply to Ron's 9-16     low blood pressure experience
Sandy's 9-21 reply to Nancy's 9-15     looking good but being sick
Sandy's 9-22 reply to Betty's 9-15     reaction to ACE inhibitor
Sandy's 9-22 reply to Michelle's 9-15     congratulations
Cathleen 9-22     some good news
Mary 9-22     my husband is worse - any ideas?
Susan's 9-22 reply to Gloria's 9-18     chemo-induced heart failure experience
Dallas 9-22     swollen liver, pacemaker experience update
Tom C 9-22     CCM experimental therapy
Jon's 9-22 reply to Tom C's 9-22     CCM experimental therapy
Katherine H's 9-22 reply to Lisa's 9-17     device implant & replacement procedures
Nancy 9-22     trying to work through depression
Bob L's 9-22 reply to Mary Anne's 9-16     problems with Coreg
Scott B's 9-22 reply to Bob L's 9-18     reducing cost of meds
Charles 9-22     soft palate implants and apnea
Marty 9-22     heart failure progression
Jon's 9-22 reply to Marty's 9-22     heart failure progression
Giorg 9-22     seek arrhythmia options
Mary Anne 9-22     switch to Toprol-XL much better
Beth C 9-22     what can we do for my mother?
Jeff A 9-22     allergies, CHF, or asthma? Help!
Carla's 9-22 reply to Nancy's 9-22     you are not alone
Mary 9-22     it may be the Altace
Bob L 9-22     new salt-free spices on store shelves
Greta's 9-22 reply to Nancy's 9-22     depression experience
Michelle D 9-22     seek travel by plane experiences
Margaret D's 9-23 reply to Nancy's 9-22     depression and illness
Ann 9-23     seek BNP test information
Vickie A's 9-23 reply to Jeff A's 9-22     asthma & CHF, doctors & more
Art 9-23     seek Natrecor experiences
Ann 9-23     seek Disability experiences
Carla's 9-23 reply to Jeff A's 9-22     allergies and heart failure
Roger H 9-23     how often should I get stress tested?
Gloria's 9-23 reply to Susan's 9-22     chemo and heart failure experience
Jon's 9-23 reply to Nancy's 9-22     battling depression with heart failure
Linda 9-24     chest sensations, disability review - anyone else?
Nancy S' 9-24 reply to Nancy's 9-22     depression experience
Bill's 9-24 reply to Ann's 9-23     disability denials are common
Gatha E 9-24     how not to shake hands
Jon's 9-24 reply to Gatha E's 9-24     how not to shake hands
Michelle D's 9-25 reply to Vickie A's 9-23     asthma and heart failure
Nancy S' 9-25 reply to Gatha E's 9-24     try antibacterial gel
Susan B's 9-25 reply to Gatha E's 9-24     not shaking hands
Valerie R's 9-25 reply to Gatha E's 9-24     not shaking hands
Margaret D 9-25     seek Medicare supplemental info
Vicki J's 9-25 reply to Nancy's 9-22     coping with heart failure
Gloria 9-25     I am very confused
Chuck F 9-25     seek Dor procedure experiences
Bill's 9-27 reply to Linda's 9-24     chest pain experience
Ann 9-27     seek troponin I test experiences
Sandy's 9-27 reply to Vicki J's 9-25     your post helped me
Lori K's 9-27 reply to Vicki A's 9-23     CHF, asthma and beta-blockers
Scott B's 9-27 reply to Vicki A's 9-23     heart failure and asthma
Rachel's 9-27 reply to Vicki J's 9-25     appreciated your post
Shane 9-27     heart transplant evaluation questions
Donna H's 9-27 reply to Gatha E's 9-24     shaking hands
Donna H 9-28     transplant questions, Vo2max questions
Jon's 9-28 reply to Donna H's 9-28     transplant and Vo2max
Bob L's 9-28 reply to Vicki J's 9-25     I love horses too
Pen 9-28     should my husband see a cardiologist?
Russ B's 9-28 reply to Shane's 9-27     aching heart experience
Patricia M's 9-30 reply to Russ B's 9-28     aching heart experience
Michael 9-30     pins and needles - anyone else?
Carla 9-30     am I obssessing about my heart?
Roger H 9-30     did well on stress test
Caroline 9-30     seek California support group
Bonnie K 9-30     seek pacemaker experiences
Chelsie 9-30     seek ideas on calf pain and fatigue
Chuck F's 9-30 reply to Michael's 9-30     pins and needles
Chuck F's 9-30 reply to Carla's 9-30     depression

Nancy S' September 16 reply to Kathy H's September 15, 2004 - Hi Kathy, I have rheumatoid arthritis and heart failure. I have been on prednisone, plaquenel, methotrexate, folic acid and naproxen for about 3 years. I do have profuse sweating at times but am hot-natured so I can't say that caused it. I will say that they saved my life. If not for those drugs, I don't think I'd even be able to walk today. My husband had to get me in and out of the bathtub and I could hardly walk some days, or write or feed myself. Now I can do just about anything I want to do.
     I get tired from the heart failure and have some minor pain, but all in all I'm 98% better than I was. I know you aren't supposed to take NSAIDs with heart failure but when I try to cut back on them so I can stop taking them I get breakthrough pain. I am having some pain in my feet now from some deformities caused by the disease but it's nothing compared to what I'd be without the drugs.
     If you can tolerate them I'd say keep taking them but there may be a reason one of them or more is not chemically agreeable with your system. They have some other drugs now, I understand. Good luck and I hope you feel much better very soon. Nancy.

Elizabeth K's September 16 reply to Lori K's September 15, 2004 - Hi Lori, Medscape just started conference coverage but you may find something in a few days. I found the beginnings at
     Giorgi, you might be interested in this article. I pasted the first paragraph here and a link follows. "May 21, 2003 - Delivery of a burst of high-speed pacing for fast ventricular tachycardia (VT) can cut the need for shock by 70% in patients with implantable cardioverter defibrillators (ICDs), according to late-breaking results of a study presented on the final day of the 24th Annual Scientific Sessions of the North American Society of Pacing and Electrophysiology in Washington, DC." Taken from:
     Medscape requires registration but it is free and I'm finding it helpful. I meet the MADIT II criteria for SCD and therefore an ICD. Since I got nominated by being entirely too perky and my great fear is that an ICD will blast me out of my kayak and drown my happy rhythmic heart, I've researched it down to the gnat's eyebrow. Medscape has had lots of good data including benefits and problems.
     Wishing everyone the best.
Jon's note: Medscape is great but full of medspeak.  ;-)

Mary Anne, September 16, 2004 - Hello, I talked with the cardiologist about generalized pain since starting Coreg in July. I had only gone up to 6.25mg twice a day but my legs hurt, my chest hurt and even my feet hurt. He agreed that perhaps it was not the drug for me. He tapered me off it at 6.25mg once daily while beginning Toprol-XL at 50mg in the morning and after a week dropping the Coreg. I feel fine with very few aches and pains. I just don't think it was the drug for me. Toprol-XL seems to be doing the job as a beta-blocker and Cozaar works as ARB. Who wants to live forever if you feel awful most of the time?

Carla, September 16, 2004 - Hello, Like Susan, I'm feeling discouraged. I would like to ask each of you that have heart failure and DCM a question.
     How soon after taking all these meds (Coreg, Lasix, Vasotec, aspirin, digoxin, etc.) did you see an improvement? It's been 9 months for me since diagnosis and probably 4 months since my meds have been maxed out. I feel great, although I'm down again because my doc keeps telling me to "take it easy" and reminds me how "sick" I am. I also get strange looks from people who can't believe I have a serious heart condition. What do they expect to see?
Jon's note: Your doctor needs a good hard kick in the shins!

Russ B, September 16, 2004 - Hi, I found this place almost by accident, and am thrilled. I am 56 years old and was diagnosed in August of 2003 with LBBB, which after a failed stress test led to the catheterization discovery of a dilated cardiomyopathy, CHF, hypertension, and an arrhythmia. I presently take Coreg, Altace, Zocor and aspirin.
     I had a biventricular pacer/ICD put in in March; it became infected, was removed, and I just had another implant done in August. Unfortunately, the atrial lead is not functioning. Does anyone have any insight as to how important the atrial lead is and should I wait until I need implant replacement to deal with this, or have surgery again?

Amy, September 16, 2004 - Hi everyone, I have had V-tach for many years now. My heart has always been in bigeminy. I have runs of nonsustained V-tach quite often. I've also had sustained V-tach. My heart doc said that the V-tach caused my heart failure. I have been on sotalol 80mg twice a day for awhile now for the arrhythmia. My EKG was normal last month, which my heart doc said was abnormal for me and that's the first normal one he's seen on me.
     My Sotalol was lowered at that appointment last month since my heart rate was low, in the low 40s. Now I'm taking 40mg twice a day. I had an echo done two days ago and my EF is now 55 to 60%; it has gone up from 30% in the past two years. The doc said my heart as a muscle has gotten stronger and is going well. However, since lowering the dose of sotalol for my arrhythmia, the bigeminy and V-tach are back.
     The doc said now he's keeping an eye on my heart to see if the arrhythmia will affect my heart failure again. If it does he will get more aggressive like he has in the past. I have had two failed ablations for the V-tach. He said the V-tach is coming from the outside of my heart, which they have yet to perfect a procedure to reach the outside of the heart.
     He said that in a month I can stop taking my Monopril. He wants me to continue it for now since I have stomach surgery next week. I'm not sure if going off the Monopril is a good idea. I just wanted to let someone know what's going on with me. Thanks for taking the time to read this. I hope everyone is doing well.
Jon's note: I strongly urge you to stay on your Monopril. This is in the official treatment guidelines - never go off your ACE inhibitor unless you have serious side effects from it - even if your heart function returns to normal.

Janice, September 16, 2004 - Hi all, I have a question for anyone that can answer. I started cardiac rehab today and during the process I had to visit with the cardiac doctor that is in charge of overseeing rehab patients. While talking with him, he was showing me some of the printouts from the hospital. My own cardiac doctor told me that my heart was twice the size of a normal heart. This doctor showed me the numbers and said my heart was not enlarged at all.
     What I am thinking is that I want to go see a heart failure doctor which we don't have here but I'm sure they do in St. Louis, Missouri. Does anyone know of a good heart failure specialist in St. Louis so I could call and see if I could see them? Thanks for any help you can give.

Ron, September 16, 2004 - Hi everybody, I've just started the cardiac rehab program and am on 25mg of Coreg and one mg of Mavick after being diagnosed with DCM in June with an EF of 15%. When my blood pressure is taken before I leave cardiac rehab, I have a reading of 82/55 yet do not feel lightheaded. Is anyone else experiencing these low readings? Should I be concerned?

Ann L's September 17 reply to Kathy's September 15, 2004 - Hi Kathy, If you must take prednisone, which I did as part of my chemo, I can tell you of the 5 drugs I took, prednisone was the most objectionable. My heart pounded for the five days I was on it. Watch the eating since the pounds will build up fast due to increased appetite.
Jon's note: Prednisone can also cause mood swings, so your mood may improve on smaller doses.

Cathleen, September 17, 2004 - Hi everyone, It's been about a month since I've posted. To sum it up, my mom was diagnosed with heart failure on July 8th of this year. Her EF was 20% and she couldn't walk 10 feet without turning grey and gasping for air. She has not seen a heart failure specialist but rather a cardiologist and her PCP. Her PCP is wonderful but the cardiologist is an ass. He was very hesitant when she asked about working and asked her if she absolutely had to work. He wasn't too happy about letting her go, but did end up letting her go back part-time.
     He hasn't seen her since the day he did her angioplasty. However, she got a wonderful letter from him a week ago saying she was well enough to go back to work full-time. We're all wondering how on earth he could determine this not having seen her. What a jerk.
     Anyway, Mom (Cecelia) is on lots of stuff: Altace, a beta-blocker, Lasix, aspirin, 1200mg of calcium, vitamins, and her antidepressant (I think she's on welbutrin). Since she has been diagnosed, she's gone through several ups and downs, and has been severely depressed. About 3 weeks ago that cloud seemed to lift. She's feeling much better and has gotten the okay from her PCP (who she sees every 2 weeks or so) to start walking and exercising.
     Mom has not smoked since she was diagnosed! She's also lost about 50 lbs and is continuing to eat healthy stuff! She told me a few days ago that it was raining out and on the way back to her car it started pouring so she ran the last block. She said that once she got in her car, it hit her that she just ran and she was still alive, and not the least bit out of breath.
     Her heart failure was supposedly caused by a virus although he didn't test for one. He just said that there was no blockage when they did the cath, so it must be a virus. There are no heart failure specialists in this area. I am hoping someone knows of one somewhat close.
     Anyway, she's in good spirits and in much better health than 9 weeks ago. She goes back in October for her 3-month check and to have another echocardiogram done to see if the meds helped her EF go up, stay the same, or go down. If it hasn't improved, her cardiologist has suggested looking at getting a defibrillator. I've read good and bad on them, and know that if it's not 100% necessary, it may not be a good idea to get one. I'm not a doctor, but looking at her and seeing her health improve, I'm taking it as a good sign, but still have worries in my mind. I'm sure she does too.
     If anyone wants, feel free to write her at or write me! Take care everyone, and once again, this site rocks!
Jon's note: For doctor recommendations, we'll need your general location.

Amy's September 17 reply to Jon's September 16, 2004 - Hi Jon, Thank you for your note. I just read alot of your material on ACE inhibitors and I will definitely talk to my doc about this. I will make sure I do not go off of it, esspecially when the arrhythmia caused the heart failure to begin with. Thanks again and also thanks for this wonderful informative site. Amy.

Bill, September 17, 2004 - Hi all, I have decided on my own to cut my Coreg dose from 6.25mg twice a day to once per day and in fact I feel better the last 4 days since I did. I also refused to have an angiogram as I consider it a slippery slope to CABG that I don't think I need at this time. My PCP says that is an ignorant position and that I am stubborn. I do still have some heart failure but I feel I am getting over that too. Bill.
Jon's note: For what it's worth, you're now spiking the drug level every day in your body so you'll never get used to it and so will never be able to tolerate it properly. The twice-a-day dosing keeps blood level constant. Maybe you should switch to Toprol-XL, which is designed to be taken once a day.

Elizabeth K's September 17 reply to Ron's September 16, 2004 - Congrats on rehab, Ron - the benefits are huge. Coreg can lower your blood pressure as well as suppress your pulse. I've had to titrate up very slowly because my blood pressure drops easily. After almost a year, I just reached 25mg. Even going slowly, my blood pressure runs 90/60 with a pulse of 80 to 85. I did peg a 120 beat per minute pulse biking uphill into a headwind last week, so blood is reaching my quads if not my brain. I've actually had great fun saying nothing about my near silent pulse and low blood pressure, sending more than one snarky nurse running for the Doppler. One got so excited she hooked me up to the EKG, nearly strangling my cardiologist as he tried to stifle the snickers.
     If you don't have symptoms and the doc isn't worried, rejoice. They should check your blood pressure before, during and after exercise at rehab - all 3 readings should give you a better picture. Your pulse and blood pressure can show inverse effects: Low blood pressure with a higher pulse rate or vice versa. I found the rehab therapists really great about explaining the whats and whys when I asked them. Happy treadmilling.

David Wilson's September 17 reply to Janice's September 16, 2004 - Hi Janice, My heart doc is Gregory Ewald at Barnes-Jewish hospital in St. Louis. He is very good and the cardiac department at Barnes-Jewish is excellent. Doc Ewald is a heart failure specialist. Their number is 1-800-521-3275 or 314-454-7687. I drive 200 miles to see him and it is worth the drive.

Scott Brown's September 17 reply to Ron's September 16, 2004 - Hi Ron, Your blood pressure is low compared to the average. Based on your medications and low EF, the low blood pressure is understandable. Your body has adjusted to the low blood pressure because it happened gradually. It's great news that you do not feel dizzy! My dad's blood pressure ranged around 62/42 for a decade and he never felt dizzy either. It's easiest to say that maybe this is normal for you. Thanks, Scott B.

Scott Brown's September 17 reply to Carla's September 16, 2004 - Hi Carla, Your doctor/cardiologist should be referring you for a treadmill stress test. Under doctor supervision, the test will attempt to push you to your limits by speeding up the treadmill and increasing the incline. With this information, the doctor should be able to determine your MET level. Each MET level has a list of activities you may be able to perform. There is a sample activities list at
     In my case, my cardiologist said Coreg would prevent my heart rate from going too high. If I feel faint, I should stop. This was far different from my family doctor who said I would never be able to participate in sports again. It took a year before I really felt better. I still feel rough some days, but I can definitely function this way.
     I would really encourage you to sort out the exercise issue. I am usually skeptical about treatments, but I feel that regular exercise has given me more energy during a normal day. I also find some of the benefits (like improved breathing) are lost relatively quickly when exercise is discontinued. I personally play recreational badminton three times a week for up to three hours per evening. It is a large time commitment, but it is fun and so beneficial. As an added bonus, a lot of sweat results in less diuretic use. From experience, you can lose a few pounds that way! Good luck with your exercise. Thanks, Scott Brown.

Scott Brown's September 17 reply to Mary Anne's September 16, 2004 - Hi Mary Anne, Coreg can be a double-edged sword. This drug appears capable of prolonging the lives of heart failure sufferers. Coreg may turn out to be a wonder drug for heart failure suffers, we just don't know for sure yet. On the other hand, Coreg may make you feel worse before you feel better. Some patients may be just too sick to tolerate the drug, while others find the side-effects outweigh the benefits. I would personally encourage people to hang in with Coreg for as long as possible. It is definitely not a solution for everyone. Good luck. Scott Brown.
Jon's note: Those who don't tolerate Coreg should try Toprol-XL unless they have asthma or very low heart rate.

Lisa, September 17, 2004 - Hi Everyone, I post here from time to time and I have some questions about ICDs. My dad has a Guidant Ventak Prizm DR model number 1851. It was implanted January 23rd of 2001. At a visit with the EP doctors yesterday, (I took him to the doctor) he was told the battery is low and it is time to replace it. Has anyone been through that procedure? How is it different from the original implant? (aside from the leads already being in place) What do we need to know from personal experiences that the docs may not have told us?
     The doctor told us that due to my dad's size( 6'3" and 220 lbs) and his history, his model is set higher and it has a higher joule setting - 41 compared to the normal 31. Therefore, his battery will only last about three years at a crack.
     Dad's history is DCM, class 2 heart failure, hypertension, type II diabetes, sleep apnea, small hemorrhagic stroke on 9/16/2002, trans-urethral resection of the prostate in 02/2003, and cardioversion in 02/2004. His EF is only around 20%. Amazingly, with that history and a fine-tuned pharmaceutical cocktail he does quite well. He is age 74 and retired.
     I always get a little nervous though, when we have to go through another procedure, so I am looking for advice, pointers, etc. I am really close with my dad. I am the only daughter of an old-fashioned Italian man! There are no brothers and sisters, so just mom, dad, hubby and me! Any help or advice would be appreciated. Thanks!

Shane, September 17, 2004 - Hey guys and gals, I just wanted to say thanks for all the replies I've already gotten. Please don't stop, because they are greatly appreciated. An update as well - I have an appointment with my doctors for 10/06 and things really start rolling from there. I'll be sure and keep y'all updated as to what's happening.

Gloria, September 18, 2004 - Hello, I just found this site and am not sure what to do. I have cardiomyopathy with heart failure due to extensive chemo given for my breast cancer. I have a lot of questions.
Jon's note: Start at

Valerie R's September 18 Carla's September 16, 2004 - Change doctors. My first doctor patted me on the head (he also wore a bow tie), said the disease was worse than AIDS and wouldn't let me drive or leave the house. I was becoming a cardiac cripple until I got a second opinion. In one week I was walking two miles a day - with a 10% EF. By the end of summer I was back at work and not crying all the time!
     I also "look good." Sometimes I feel we should just wear a sign. I told my best friend that if she told me I looked good again, I'd punch her out! Oh well.

Bob L, September 18, 2004 - Thank God and Jon for The Manual. I did not have the benefit of info about diet, etc,..., after my hospital stay nor did I get it after a month in a rehab facility. Our big concern now is meds and the cost of these rascals. I take Plavix, Coreg, and Altace to name just a few. Do any of you have any idea where to get some of these at a lower cost? We are in the process of checking out some companies and filling out forms to apply at other's. I am going to see a new cardiologist on 9/30 and maybe bettr info will be forthcoming. Thanks for any suggestions and God bless.

Barb N, September 18, 2004 - Hi all, To weigh in on the beta-blocker sounding board, I tried Coreg (low dose)last year and was hit with incredible blood sugar spikes (I have diabetes, so I monitor), major weight gain and overwhelming fatigue. After 3 months I changed to Toprol-XL. It seems to do the heart rate/blood pressure control thing without as many side effects. I take an ARB also. I don't know if Toprol-XL is as good for heart failure, but for me it is much better for quality of life.
     The biochemical advantage of Coreg, maybe more antioxidant properties, I try to compensate for with moderate doses of specific supplements such as alpha-lipoic acid (ubiquinone)and bilberry. The latter was recommended by my ophthalmologist, who indicated it may be protective against diabetic retinopathy - important to this board because insulin resistance/diabetes and heart failure seem to be linked in so many people.
     On another note I am looking for a good heart failure specialist or cardiologist in the District of Columbia or northern Virginia area, preferably one not afraid to talk with his patients. Thanks, and God bless!

Roger H's September 18 reply to Ron's September 16, 2004 - Hi, There are a few times I go to the doctor and my blood pressure might be 75/42 or somewhere around that and they ask if I'm okay and check the other arm. For the most part I run 85/50 and all is well. If I jump up suddenly, I will get a little lightheaded.

Sandy's September 21 reply to Nancy's September 15, 2004 - Hello, I had to comment on this also. I've been told by family and friends, "You don't look sick" and sometimes I want to look sick so they will believe how bad I really do feel! I try so hard not to cry sometimes!

Sandy's September 22 reply to Betty's September 15, 2004 - Hi Betty, I too had bad reactions to Ace inhibitors. My doctor put me on Micardis (an ARB) and I have had no problem since. Good luck to you!

Sandy's September 22 reply to Michelle's September 15, 2004 - Hi Michelle, I just wanted to congratulate you on your 8-year anniversary of heart transplant. You're the courage I need to keep me going. Bless you.

Cathleen, September 22, 2004 - Hi Jon and everyone, I have good news! The day after I posted my last message I got a phone call from the heart failure specialist in town! I had e-mailed him and left 3 voice-mails for him in the middle of July and no one returned my calls. His nurse called me Thursday. He was on a 6-week vacation back to his country and then was at a 3-week conference.
     Anyway, Mom (Cecelia) has an hour long consultation with him on Thursday the 23rd at 3:00 PM - Yea! I can't tell you all how happy I am! The nurse was awesome and said that once my mom is enrolled in this program they monitor her very closely for awhile and then monitor via the phone weekly. She'll only need to come in after the first month when she's sick. I'm super excited to go along with her and learn all that I can.

Mary, September 22, 2004 - Hi, I have been lurking for over a year. My husband has cardiomyopathy. He was diagnosed two years ago. Everything has been fine until the past month. He has many dizzy spells, the backs of his legs ache so badly he has to sit down, and he can't walk much at all. He is currently taking Altace, Coreg, Coumadin (warfarin), digoxin, and amiodarone (Cordarone). Suggestions or advice would be appreciated - I am very worried. Thanks, Mary.
Jon's note: This sounds a lot like dehydration, although it could be related to heart function. If he has not had any edema, maybe he should reduce his diuretic dose. If he is having edema, he should see his heart failure doctor.

Susan's September 22 reply to Gloria's September 18, 2004 - Hi, I have been diagnosed with dilated cardiomyopathy and was in heart failure in 02/04, also from chemo for breast cancer. It was a hard time. I had completed seven chemo treatments, then got hit with the heart stuff. However, medications and watching what I eat has helped me, as has reading The Manual on this site. I know you must be going through a great deal right now - as if cancer was not enough. You've come to to a good place for help. Please feel free to e-mail me directly, Susan.

Dallas, September 22, 2004 - Hello, I am decompensated period of right-sided heart failure. Last Tuesday I noticed that I no longer sleep all through the night. This has happened only twice before since my initial diagnosis of viral DCM in September of 1996, and both times were because of stomach edema with an enlarged liver, in 2002 and earlier this summer. Does anyone else ever notice a similar pattern when they are in a decompensated state?
     I was told this past July that I'm in end stage heart failure and am not an ideal heart transplant candidate because of poor kidney function, with a sometime creatinine level of 180 to 230. My specialists are going to try to keep me comfortable by maximizing drug therapy, all conventional therapies and any non-conventional therapy available.
     This past July my basic pacemaker was removed so they could implant a biventricular pacer with ICD. Unfortunately, even after almost 4 hours, the electrophysiologist was not able to place that important 3rd lead into the best vein and placed it in a less desirable location. It hasn't made any difference that I can feel to my symptoms but I'm to go for yet another echo with doppler to see what my mitral valve regurgitation is like now, etc. They want to optimize its performance in its present placement before they decide about doing a thoracotomy for better device placement.
     As always, this is a fabulous site and a great help to many!
Jon's note: It is very difficult to sleep properly with a swollen liver. Not only is it very uncomfortable, but it leaves less room for your lungs to move which makes it hard to breathe.

Tom C, September 22, 2004 - Hi, My heart failure specialist, a university doctor, is offering me a part in the USA test of a special kind of implanted device. The company is called Impulse Dynamics and the technology is called Cardiac Contractility Modulation or CCM. Supposedly it's been successful in European programs. I will get more information at my next appointment in about 4 weeks, but it somehow makes every third beat of the heart stronger, according to my doc. I'm 18 months from diagnosis and I feel lousy full-time, so I'm considering it. I have an ICD. I am not sure if this thing would replace it or be a second implant. Has anyone here heard of it? Jon?

Jon's September 22 reply to Tom C's September 22, 2004 - Hi Tom, This is not pacing. I just want to make that point first. <g> CCM uses electrical stimulation of the heart's ventricles during the "refractory period" of the heart beat to increase heart output of blood. I moved an old mailing (text file) to called Arrhythmia_treatment.txt to help everyone understand some odds and ends about the heart's activity - like the refractory period. That is the period after being stimulated that a cell has to rest before it will respond to another stimulation.
     This is really new and the first real human trials - done just for safety testing - were reported earlier this year. It looks like a possible add-on therapy for people with poor EF and heart failure that does not respond well to meds. At this time, no one has a clue what long-term results or side effects might be. The two human trials I have read were done with about a dozen patients and the endpoints were all about safety, with other results reporting not as tightly controlled as they will be in later phase 2 or phase 3 trials.
     I believe two leads were used and therapy is "active" about 3 to 7 hours a day. It seems that this therapy needs to be given for different amounts of time for different patients and researchers are feeling their way into how much and when for which patients.
     This is really a sort of "inotropic" therapy. That means the therapy is designed to make the heart's ventricles beat more strongly. If you have systolic heart failure, are class 3 or 4, and meds are maximized but not improving your symptoms, CCM may be an option to consider. Be sure you do not qualify for a BiV pacer first because if you do, that might be a better option.
     This part is hard to explain without causing misunderstanding. Personally, I don't really have any opinions on CCM yet. However, it does not address any specific cause of worsening heart failure. I mean that it doesn't stop any substances know to worsen CHF, nor does it prevent any harmful actions caused by heart failure. Instead, it tries to supercharge heart function. It may improve heart function (and I'm all for that) but it may not prevent heart failure from getting worse in many ways. No one knows - that's why trials are done! ;-) This would almost certainly be a separate device at this time.
     More posts later. I am still trying to catch up after 2 bad days and a doctor visit. Jon.

Katherine H's September 22 reply to Lisa's September 17, 2004 - Hi Lisa, I think the replacement procedure is very similar to a pacemaker. I had to have mine moved due to a frozen shoulder and I was told it's pretty much the same as a replacement. They remove the computer portion and tie the leads to the new computer so it's not nearly as extensive as the original implant. They don't even keep you overnight in the hospital. It could be different for an ICD but I thought this might help.

Nancy, September 22, 2004 - Hi all, I was diagnosed with dilated cardiomyopathy almost a year ago. I am finding myself battling a tough case of depression. I am seeing therapists and a psychiatriast, I have a wonderful husband to talk to. The problem is that I still feel so alone, so vulnerable and depressed. Has anyone had any success working through this, and if so, how? I am a Christian and I pray all the time. My head knows all is well, but my insides are scared to death. Any comments would be appreciated. Nancy.
Jon's note: How do you feel physically compared to a year ago?

Bob L's September 22 reply to Mary Anne's September 16, 2004 - Hi, I also am having problems with Coreg. I used to take Toprol-XL with no problem. The Coreg upsets my stomach and now I have back pains. My doctor and I are working on resolving this. Rest assured I'll not do it on my own.

Scott B's September 22 reply to Bob L's September 18, 2004 - Hi Bob, This question is coming up a lot lately, and I will throw in my suggestions for cheaper medications: Investigate buying your drugs from Canadian sources; buy the highest dose of each pill and use a pill splitter to chop the pill into your dose (the price of a 6.25mg tablet of Coreg costs the same as a 25mg tablet of Coreg so split the 25mg pill into 4 equal parts and you can save 75% in costs); buy generic (Coreg has a generic available in Canada); buy in quantity (on some Internet sites, buying 200 pills is cheaper per pill than 100 pills. At a regular pharmacy, you would save paying the dispensing fee twice). Feel free to e-mail me if you want some help checking out the legitimacy of a Canadian pharmacy. Thanks, Scott Brown.

Greta's September 22 reply to Bob L's September 18, 2004 - Hello Bob, and everyone else who reads the message board. I should have posted this information already, but now is as good a time as any. Bob, these two web sites might offer you some medication assistance. It is worth a try. They are and The latter is geared more toward government assistance programs, so the first one may be more what you are looking for. Keep us posted about the outcome. Blessings, Greta.

Charles, September 22, 2004 - Hi, I saw a feature on a network morning talk show about soft palate implants to cure snoring. They said they are 3/4 in polyester, a one-day outpatient procedure costing $1500 and will cure mild to moderate sleep apnea. My cardiologist said 40% of his patients have apnea and wants me to test, but I have balked due to the potential of the CPAP, which I dread and fear. Has anyone heard of these?
     I am bivouaced in the DC area and still have no word whether I still have a home in the Florida panhandle. The area has been told not to expect power again for 6 to 8 weeks. Limbo is killing me.

Marty, September 22, 2004 - Hi, Just a quick question. My cardiologist has told me that I'm part of a relatively newly recognized category of cardiac patient in that I'm completely asymptomatic except for low EF and LBBB that showed up on an annual echo due to family history of DCM. My question is whether you've read or heard of people avoiding the progression from HF to CHF. The only other issues I've had were relative to the complications I had with an ICD implant and heart puncture and bleeding. The second ICD is working out much better and I'm finally off the narcotic pain relievers. The Coreg makes me really tired but I'm game for it based on all I've read on this phenomenal site and my doctor's conviction that I'll do well with it. I see that you're working hard to keep up with all the posts you're getting, so I'll be patient waiting for a response. Thanks and God bless you and all the other big-hearted people here! Marty.

Jon's September 22 reply to Marty's September 22, 2004 - Hi Marty, HF = heart failure = CHF = congestive heart failure. These are all synonyms. They refer to a symptom set, as explained in The Manual. If you have no symptoms and have never had symptoms in the past, you don't actually have heart failure - you have cardiomyopathy that has not yet progressed into heart failure. Avoiding heart failure is largely a matter of following the "program" as outlined in The Manual and of course, God's plans for your life. How many people with DCM never go into heart failure? I have no idea. Sorry but I just don't know. Jon.

Giorg, September 22, 2004 - Hi all, In the last month I am suffering frequent ventricular arrhythmias (one or two every day). My EF is not that bad (between 30 and 40%) and my Vo2max is good (around 30), but arrhythmias are making me nuts. I had two shocks in the last ten days because of those. Now I just got new settings for my ICD that should give me ATP before a shock on those fast ventricular arrhythmias. However, I am quite terrified about being shocked again. When I am home with friends or relatives I am okay but the anguish comes when I go working. I cannot take amiodarone. What drug could I take? I already take ACE inhibitor, beta-blocker, and an ARB. Can this kind of arrhythmia take me quickly to need a heart transpant? Thank you.
Jon's note: There is a list of anti-arrhythmic drugs at You might try researching these drugs and then discussing options with your doctor.

Mary Anne, September 22, 2004 - Hi all, I tapered off Coreg while beginning Toprol-XL and I feel immeasurably better. It was almost like an allergy to it. Perhaps I'll try Coreg again but not unless I see no improvement with Toprol-XL. Thanks everyone, for your input.

Beth C, September 22, 2004 - Hi, My mother was diagnosed with heart failure last summer. Her regular doctor put her on Coreg, which made her dizzy and tired all the time. When we told him this he took her off the med but did not prescribe anything else.
     Her legs are filled with fluid and now are weeping. We understand that she is going to die soon but would like to know if there is anything that can be prescribed other than Lasix to help the swelling andf discomfort in her legs. One doctor said she was near renal failure and another said her kidneys were not that bad.
     At this point we are extremely confused and can't get a straight answer from anyone. Do we just make her as comfortable as possible or is there anything anyone can suggest? We are desperate. Beth.
Jon's note: Have you read The Manual?

Jeff A, September 22, 2004 - Hello, I am confused and am looking for a perspective from people with more experience or knowledge. I have DCM and heart failure, diagnosed 11/03 after a TIA in 11/03 from an infection, apparently. The clot most likely formed on a mechanical aortic valve implanted 10/02.
     During the years 1998 to 2002 while we chased discovering my valve problems, I had many instances of what were thought to be environmental allergies (I do test positive) and/or asthma. I cannot be treated ongoing because I don't tolerate steroids. These occurrences were most prevalent in the fall, though they did occur at other seasonal times and ultimately led to repeated cycles of bronchitis, typically ended by steroid treatment, which I could tolerate only because of the short duration of the steroids. After starting heart failure meds in December of 2003, after two months I was able to stop using all allergy medicines except continuing to take a daily Allegra. No inhalers or nose sprays were needed. My cardiologist's office said this was because we had been attempting to treat early stages of heart failure, unsuccessfully, with allergy meds. That seemed reasonable to me.
     It is now that time of year again. The congestion and swollen glands and throat of allergy season have returned, or is it seasonal heart failure, if there is such a thing? My weight is fluctuating more than it has since starting CHF meds in December of 2003. There have been no changes in my heart failure treatment by my doctors or myself to which I can relate this. I feel congested. As always, allergy treatments seem to have minimal effect. My cardiology nurse said I am experiencing heart failure symptoms. My primary doctor emphasizes the abnormal pulmonary tests of several years ago and leans toward allergy being the cause.
     Is there a relationship here I don't understand? It is a bit concerning as it is unpleasant, and makes me wonder if I will catch an infection soon and start the same cycles over again. Are there others battling both allergies and heart failure? How do you differentiate what is occurring. Thanks as always, Jeff A.

Carla's September 22 reply to Nancy's September 22, 2004 - Hi Nancy, I was diagnosed in January of 2004 with an EF of 25%. I have yet to see any improvement and it's tearing me up. I totally understand the depression.
     I was under the care of my internist in the hopes of adjusting my blood pressure meds for the possibility of a future pregnancy. I had just gotten married and neither of us had any children. I was taken off Vaseretic (Vasotec with a diuretic added) and put on Aldomet. All was well until one night I woke up feeling like I was drowning and was rushed to the ER. Three days later, I'm being told that a virus attacked my heart, that I'm very ill and that I will never have children.
     It's been so much for me to take in. I have yet to seek counseling, although my docs have recommended it. I'm like you as I feel that I have a wonderful support network. My husband and family are wonderful to me. In fact, my husband still believes that I will fully recover someday and be blessed with a child. He's got so much faith!
     I still work full-time and do all the things I used to do. I wouldn't have ever guessed I was so sick! I should be thankful that we found this and that I can get help and hopefully live out my full life but then again, sometimes I wish I didn't know and have this cloud always hanging over my head. I know it doesn't help when some of the meds we take say, "can cause depression."
     I don't have the answers, but please know that you're not alone.

Mary, September 22, 2004 - Hi again and thanks Jon, for your footnote of advice. Bob went to the doctor yesterday and they feel like it is the Altace. So today he didn't take any and tonight he feels 90% better. Tomorrow he starts on a much lower dose of 2mg Altace daily. His heart failure doctor said if it does truly turn out to be the Altace they may stop it completely. So far just 24 hours later, and what a difference I see in him. Has anyone else had this problem?

Bob L, September 22, 2004 - Hi all, You may already know of them but McCormick has some new "Salt Free" spices. There are about 6 varieties. I tried the "spicy" and it is great on veggies. The cost is about 1.50 to 2.50 dollars US. They are great substitutes. We also got "Italian" and my wife made some salt free spaghetti sauce for me - great stuff. Try 'em, you'll like 'em, and no salt to boot. Enjoy y'all.

Greta's September 22 reply to Nancy's September 22, 2004 - Hi Nancy, I wish I had a ton of advice to give you concerning your depression. The reality of it is you do have good reason to be depressed. Heart failure robs you. It keeps you from doing the things you used to do so effortlessly, it has changed your eating habits, and generally has messed up your life style. At that point in my life (March, 2003) I had to re-invent and re-define who I was.
     Life is constant change - some good, some rotten. I did not escape the depression that is common among people who have newly diagnosed heart failure. In fact, I almost didn't recognize it for what it was. I am now taking an antidepressant called Trazodone and I can tell the difference. I have not had any one-on-one therapy but have been able to, with help of the antidepressant, maintain a healthy attitude and outlook. I wish it was that easy for all CHFers.
     Since I really have no advice, I just wanted to let you know you are not alone. There are a whole bunch of us who fully understand what you are experiencing. We are here for you. If you would like to e-mail me personally, please feel free to do so and I will reply. PS. I just said a prayer for you. Blessings, Greta.

Michelle D, September 22, 2004 - Hi there, I hope everyone is well. I was wondering if anyone has had any problems with flying? I have always been rather uncomfortable flying and although I have done my share of it, I even flew to Paris, which I never in my life thought I would do. Lately, when I fly I really feel uncomfortable in the breathing department. I mean I can do it but I really feel like there is no air. I am thinking of going to my sister's in Kansas this month and I can either fly or take the train. Four hours on the plane as opposed to 36 hours on the train, but I really hate that feeling on the plane. So after my longwinded, roundabout way, I am interested to know if anyone else has that feeling with flying and what can I do about it? Thanks.

Margaret D's September 23 reply to Nancy's September 22, 2004 - Hi Nancy, It is understandable that you are depressed. As you probably know, it is very common after diagnosis with a chronic illness. Our lives are changed forever and this is the reality. There are things you can do for yourself. If you can still work, then do so. It gets you out of the house and provides much distraction. I couldn't work but I could do some volunteer work and I found a niche with the CHF nurse at the hospital. One of the big things I do is go to the gym. Exercise is very good for us anyway, but it helps ward off depression as well. I love to go to the gym! Another thing that may be available to you are support groups. In my area, we have a monthly heart failure support group with a speaker and refreshments (low sodium of course!). There is also a separate support group for women with heart disease. It helps to know that you are not alone! Message boards like Jon's and chat rooms for heart patients are good. Lastly, there are a number of anti-depressant drugs out there and some patients do need them. Don't feel like a failure if you take them. I hope this helps.

Ann, September 23, 2004 - Hi, Recently my cardiologist ordered a BNP test. The test results were 122. My internist told me the numbers indicated that I didn't have any problem with my systolic portion of my heart. She did however tell me that the 122 number was not normal for diastolic. I have gone online and read as much as I could find on BNP test results. I have learned some, but I sure could use more info. Can anyone shed more light on the numerical results of my test? Thanks, Ann.
Jon's note: You can have a low EF (reduced systolic function) and have a "normal" BNP result. Your result can easily indicate systolic dysfunction. How your doctor draws his conclusions is beyond me. See for more on DHF and BNP.

Vickie A's September 23 reply to Jeff A's September 22, 2004 - Hi All, This the first time I have posted, but I have read many of your posts. I have asthma and heart failure, and it is a confusing mess, especially this time of the year. Last fall, when my symptoms first began, my doctor explored the asthma route since I had never had symptoms of CHF before. My symptoms began when I got what I thought was a bad respiratory infection. I was started on all the normal meds but to no avail.
     So I was treated for asthma. After receiving some relief, my symptoms recurred and I was sent to a lung specialist. I was told that my asthma had progressed to moderate to severe and I had COPD. Several meds were changed and I felt better for a short time, then all my symptoms returned. I spent the early part of winter on and off prednisone for asthma and breathing. Then my feet and legs started to swell, my blood pressure elevated, and my extreme cough returned. I spent many nights coughing and coughing. Then I started coughing up a pinkish foaming substance - I was scared to death. I called my PCP and he saw me immediately. I was fatigued, swollen, wheezing, coughing and thought I was dying.
     He sent me for another chest x-ray and told me he thought I had heart failure. Once I began a different meds regimen I felt better. Now as summer is progressing into fall here I am again short of breath, wheezing, coughing, retaining fluid and extremely tired. My doctor increased my Bumex from 2mg to 4mg and then to 8mg. I would get some relief, then my symptoms would return. He sent me to a new cardiologist since I refused to return to the one I had seen over the years. He wanted my medications revised but the doctor refused until he had completed - you guessed it - more testing.
     In the meantime I thought I was going die, so I called my PCP again and he told me to come in immediately. He added spironolactone (Aldactone) and Coreg and is tapering me off Toprol-XL and I once again began to feel better. I had even started walking just a bit. Tuesday I returned to my cardiologist for my test results. He did not agree with the new meds and said I needed to pursue the asthma portion once again. He told me to stop the new meds and start decreasing the Toprol-XL. Also, he wanted me to stop taking the Uniphril. When I explained that we had previously pursued the lung specialist he said he would call my PCP and they would brainstorm.
     I am a paralegal for a litigation attorney and maybe I overanalyze everything but this seemed crazy to stop meds that were helping me. After all, these were new meds. I had not been taking them from the start of all this and they could not have been causing the problems. Yesterday, my PCP called and told me not to stop the meds and to get in his office right away.
     I sympathize with you, Jeff. We put our lives in the hands of others, whom we trust, and it is like stepping on a roller coaster. I just feel like screaming, "Let me off!" then I snap back to reality. I just take it a day at a time.
     There were two things the doctors agreed upon: That I should quit working, that this was complicating the disease; and that I should put exercise of any sort on hold. I feel like I am being pulled in all directions. You are more susecptable to infection and you will probably experience many recurrences. I have to tell my grown children to stay away when they have colds or flu in their families, especially now that my grandkids are in school. It takes me 5 times as long to get over something as anyone else in the family. Ask your doctor for a flu shot and a pnuemonia shot. It does help.
     I have found that asthma does aggravate my heart failure and vice versa, especially in peak allergy season. Take charge of your medical treatment and if you don't agree, go with your gut feelings. It is okay to disagree with your doctors, they are only human and not perfect. I am a Christian and I pray a lot. I put every thing in God's hands. He will carry me through. I hope this helps. Vickie.

Art, September 23, 2004 - Hi, I would like input from anyone out there who has had Natrecor infusion treatments as a modality of treatment for class 3 heart failure. I have been told that it can reverse a lot of the symptoms that class 3 and 4 CHFers suffer from such as dyspnea, slow the remodeling effect and increase one's EF. If anyone out there has had this treatment, I would appreciate your comments.

Ann, September 23, 2004 - Hello, I have heart failure and I applied for SSD. I am 61 years old and have been denied twice in 18 months. The doctor said my heart was working at 40%. Is this usual for SS Disability to deny 2 times? Thanks, Ann.

Carla's September 23 reply to Jeff A's September 22, 2004 - Hi, It's funny that you mentioned this: Heart failure versus allergies. I have noticed that I seemed to keep bronchitis symptoms year round, most especially as the seasons chang. This year seems different for me and I was wondering if it's because I'm all dried up! Here in Texas, we're having really high mold and ragweed counts, and I haven't been nearly as congested and wheezing like I usually do. However, I have noticed more swelling and feeling like a slug. The true test, however, will be in December when good old Cedar Fever starts. Last year, that's how they found my DCM. We thought it was just a really bad case of Cedar Fever. I did have bronchitis that was disguising the true problem and I was treated with steroids. I'm not sure how I'll do this first time around after diagnosis. I worry every time I cough that it's my heart. I just try to keep a close eye on my pulse and blood pressure.

Roger H, September 23, 2004 - Hi all, I was just wondering how often anymore that a stress test is run. My first bypass was in 1989 and the cardiologist ran a test every year for about five years. This time through, for my bypass in 2001 and after 3 months I was set out at the curb. I found a new cardiologist - going on a year now - and he ran some tests but no stress test. Next week I get a stress test because I won a 6-month membership to a health club and I inquired, and he said all should be okay but just to make sure, we'll do a test. The club said I'd have to get the doctor's approval.

Gloria's September 23 reply to Susan's September 22, 2004 - Hi Susan, I had my cancer in 1997 with a full year of chemo, and like you I was about halfway through when a MUGA showed heart damage so they took me off the adrymiacin and put me on something else. The problem is that they never explained my heart damage, they just told me to lay off the salt and put me on Toprol-XL, which they said was for my high blood pressure.
     It wasn't until I was done with radiation (after the chemo) that I was sent to a cardiologist and he said I had cardiomyopathy with heart failure and put me on Norvasc. He ran a lot of tests and keeps on top of things but he never told me anything and I was too dumb to ask. Besides the cancer, I was having some major personal problems so I put the heart issue on the back burner until I found Jon's and realized how little I knew. It has been a godsend! Gloria from Texas.

Jon's September 23 reply to Nancy's September 22, 2004 - Hi Nancy, I notice you used the words "alone, vulnerable, and depressed." The first two are probably major contributors to the third, so hopefully coping with them will lessen the depression. First, as you can see from this web site, you are anything but alone. Take the time to actually read through the bios so that point really sinks home into your gut, not just your mind.
     Vulnerability comes largely from feeling that you have no control over your personal situation. Well, maybe you do and maybe you don't, but there are ways to at least gain the semblance of control, if not the real thing. It helps. Be proactive about every aspect of your illness.
     Knowing exactly what each of your meds does, when the best time is for you to take it, and what dose you should be aiming for is a start. Formulating and then following a well-thought-out eating plan is another great way to take control and this will eliminate much edema along the way. Finding, interviewing, and getting acquainted with doctors until you find the right one for you is a great step, even though it is usually the toughest one for a CHFer to take. Learning about exercise, laying out a plan and following it, then modifying it until it works for you is one more brick in the wall against vulnerability.
     Many of these things seem simple but they often require keeping a daily written log to accurately adjust to working formulas. Don't think you are eating low sodium - write down every milligram every day and be sure. Don't think your exercise is working - write down how you feel every day and how you exercise (precisely) every day, then every 2 to 3 months compare one to the other and decide what changes will improve your well being. You get the idea.
     Finally, if you don't work, invent a "job" of some kind. I wrote a web site; it's just one of many possibilities. Stay active. If you do have a job, find some physically easy activity that relaxes you and indulge in it at least once a week. My dog also makes a world of difference in my attitude. In other words, follow The Manual. <g>
     If you're a Christian, there's another whole stack of options available to you to ward off negative emotions. Make the choice, take the plunge! Feel free to e-mail me anytime. Jon.

Linda, September 24, 2004 - Hi, My heart failure was in 2002, with an ejection fraction of 13%. Today, my ejection fraction is at 40 to 45%. I am experiencing weird things like pains in my chest. Doctors ordered a stress test, they said it was all okay and that maybe I have stomach problems.
     Last night I experienced my blood pressure rising in my chest and had funny feelings in my chest, so I couldn't sleep at all, but the doctors said to take Zantac for my stomach. Is there anyone going through this problem? Also, I am on Social Security and I am worried that my condition seems to be getting better like my ejection fraction and my review with the Social Security will be coming soon. Is anyone going through this too?

Nancy S' September 24 reply to Nancy's September 22, 2004 - Hi Nancy, I know exactly what you're going through and many of us do. I was diagnosed about 4 years ago and the first year I felt the same way. Then I was sent to a heart failure specialist, who changed my meds and added others, and I began to feel better. I had a biventricular pacemaker put in about 8 months later and it made a world of difference.
     I finally got it through my head that the statistics of people living or dying with this disease are way over-rated. I realized that they've made much progress both with new drugs and devices in the past few years, and that adds many years to our lives.
     I went through a spell of depression a few weeks ago but thankfully it passed quickly with the help of my friends, my husband, and lots of prayers. I've lost my mom and my 13-year-old dog that was my baby since March, so I guess I had a right to be depressed. It seems that when I'm feeling down about other things is when I start brooding about this condition. I've chosen to live with it as well as I can and hope you will do the same. Don't let it win! My heart and prayers go out to you that you'll be better very soon. Nancy.

Bill's September 24 reply to Ann's September 23, 2004 - Hi Ann, Yes, this is not unusual. See the SSD page.

Gatha E, September 24, 2004 - Hi Jon and Friends, I need help. My church has a hand shaking at the beginning of every service. I have stopped going in order to protect my immune system. It seems like every time I shook hands with someone that I would get sick with a cold, which always turns into a big heart failure episode. Does anyone else out there have this problem and how do you quickly tell someone that you don't shake hands? I really feel left out not going to church. My doctor is no help, the first thing he does when he walks into the exam room is stick his hand out.

Jon's September 24 reply to Gatha E's September 24, 2004 - Hiya Gatha, My church has the same beginning at main services. I stay seated and sit on my hands - literally. Other options exist: You can buy very thin plastic (not latex) gloves at the hardware store that are used for applying stain to wood. These make great germ shields if you want to shake hands. You can peel them inside out while taking them off so you don't touch the outside with your skin, and toss them later. They do make your hands a bit warm but not too badly if you're not active while wearing them. If you use gloves, remember not to touch your Bible with the gloves on! As a next-to-last resort, go into the service 5 minutes after it starts and sit down after the hand shaking (hide in the restroom if necessary until then). The last resort is to go ahead and shake hands, then immediately go to the restroom and thoroughly wash your hands, then return to the service. Jon.

Michelle D's September 25 reply to Vickie A's September 23, 2004 - Hi, I was just reading your post and found it quite interesting. I too have asthma as well as heart failure and pulmonary hypertension due to sleep apnea, among other things.
     For years, I have been being treated just for asthma and every year or so got a horrendous upper respiratory infection which would keep me down for a lot longer than anyone else in my family. Finally this year they have realized that my shortness of breath and problems breathing were more related to the heart failure and PH than the asthma.
     I have asthma still, but after the pulmonary function tests they realized that asthma is not my main problem. Now I take Seravent twice a day and have had virtually no need for my rescue inhaler and I haven't been sick with a cold that turns into an upper respiratory infection in almost 10 months!
     I am now up to 6.5mg of Coreg twice a day and to tell you the truth I really feel much better than when I started the Coreg. I still get really out of breath if I walk too fast and I have to stop every three blocks or so. I have to walk painfully slow to my mind and I have to keep telling myself not to compare myself to last year when I was working out at a place called Curves and was doing really well. I really really wish I could go back there and do the circuit, which is 30 minutes or so, but I am trying to work up to it. Maybe in about 10 years I will be able to! <lol>
     Anyway, hang in there. Like you said, it is in God's hands and we have to live one day at a time. Being able to relate to others on this message board is very therapeutic and I am thankful for all of you out there! Thanks, Michelle D.

Nancy S' September 25 reply to Gatha E's September 24, 2004 - Hi Gatha, There are hand sanitizing gels on the market today that are very inexpensive and kill germs on contact. There's no reason you can't shake hands. I work in the health care industry and use these all the time. They are used in hospitals too and kill more germs than soap. I believe they kill 99%. They come in very small bottles you could carry in your purse or pocket and use it immediately after touching anything you think will harm you. Please don't give up church because of this. Take care, Nancy.

Susan B's September 25 reply to Gatha E's September 24, 2004 - Dear Gatha E, My husband has DCM and I have a small business, where handshaking might seem required. I just tell my clients that I don't want to share my germs with them. I tell them that since my husband has been ill, I have noticed that I should not be sharing my germs with other people. So please forgive me, I tell them, but in the long run they will be happier without my germs. I have been doing this almost daily for the last 2 to 3 years. My new clients and old thank me for not sharing my germs and smile. Maybe it would work for you. I smile when I say it and it has been taken well. Good luck, Susan B.

Valerie R's September 25 reply to Gatha E's September 24, 2004 - Hi, When I taught school (grade 8) I kept antibiotic hand lotion and a plastic bottle of Purel as well in my podium. It seemed to work for me for 7 years. Also, does everyone get the flu shot? I think that's important.

Margaret D, September 25, 2004 - Hi everyone, After two years on SSD, I will be going on Medicare in a few months. I would really like to also add a supplemental policy to cover more stuff. I do know that they don't have to accept you for a supplemental if you are under age 65. Has anyone had any experience with this, or know any groups that might take someone with IDCM? There is free Medicare counseling here in Florida but I would venture a guess that most of their experience is with patients over 65. I would appreciate any help, thanks.

Vicki J's September 25 reply to Nancy's September 22, 2004 - Hi Nancy, I'm 49 and was diagnosed on 9/12/2001. I remember the exact date because my doctor was stuck in New York. My dad died with CHF. I went to the doctor for a checkup and test results by myself. He told me I had idiopathic dilated cardiomyopathy. It didn't hit me until I was driving home that I had heart failure like my dad. His was a long, lingering death but this was 20 years ago and meds and options are a lot better now. It still didn't keep me from crying all the way home because I want to go quickly and quietly when my time is up. To top it all off, I got a speeding ticket trying to speed up the two hour drive home. I was crying so hard I couldn't even tell the officer what was wrong.
     After I went through this I decided God put me here for a reason so I put myself in His hands to do with me as He wants. I try to be cheerful and upbeat because things could be so much worse. I love horses and they've always been part of my life. I shod (put his shoes on) my own horse and everything. I don't have the strength to do this anymore or care for him so I had to sell him. It broke my heart but I thought at least I can still ride on my good days with friends.
     When I'm at the hospital I see so many children under 10 and babies who are just hanging on by a thread but they're always smiling and they haven't even started living. I'm sorry to rattle on so long but I think everyone who faces dying goes through this. I had an ICD implanted in 01/2004 because my heart was stopping. Talking about being worried, I just knew this was my last day. Luckily, everyone here encouraged me and supported me until it was over.
     I feel fine now even though I'm tired most of the time. Just learn how to pace yourself. If your body says rest, take a break. I've lived a good life and have always believed if God brings you to it, He'll get you through it. Good luck and try to keep your spirits up. You'll be in my prayers. God bless, Vicki J.

Gloria, September 25, 2004 - Hi all, I saw my cardiologist yesterday and now I am more confused than ever. When I was getting chemo they did a MUGA and told me that they needed to take me off adriamycin. They sent a report to my internist and he told me I had cardiomyopathy with CHF and ran a bunch of tests. He had me do a treadmill test and about one minute into it he stopped it and said I was throwing too many PVCs. He is also the one that filled out all the reports that got me immediately on SS disability.
     But because my oncologist and radiation treatments were at a different facility miles away, I wanted to keep my doctors all in the same group so I quit him and started with a cardiologist - the one I saw yesterday. This guy tells me I don't have cardiomyopathy or heart failure and my EF is 68%! He is only treating me for my hypertension and that has caused some thickening of the heart but no ill effects.
     I am still tired all the time. I still have a very hard time breathing and have to have fans on all over the house and even taking a shower means a 15 minute rest afterward. I have to believe the cardiologist, don't I? A 68% EF doesn't lie. I am sooo confused now.
Jon's note: I would get copies of all my medical records and look at all of them to start. Heart failure is common in adriamycin patients.

Chuck F, September 25, 2004 - Hello, I am new to this forum. I am 45 years old, have had 2 MIs and heart failure with an aneurysm on my anterior ventricular wall as well as the septum. My EF is in the high 20s to low 30s. They are now considering the Dor procedure for reconstruction. Fortunately, Dr. Kirsh at University of Michigan is the planned surgeon. Is anyone familiar with someone that has had this procedure? Thank you very much.

Bill's September 27 reply to Linda's September 24, 2004 - Hi Linda, I've been to my doctor and cardiologist for bad chest pains and I had an EKG and BNP test and they looked okay. They both think it may be reflux and gave me nexium. It seems to have helped. Good luck, Bill.

Ann, September 27, 2004 - Hi, I am wondering if anyone here has had chronically elevated (false positive) troponin I test results. I have been tested for troponin I many times in conjuction with shortness of breath at the hospital and the results are always positive, which has been interpreted as false positive. I did have a stent placed one time. Since then I still have these positive test results. I'm just curious if the explanation for these seemingly false positive results might represent something I should be concerned about. I do have mild pulmonary hypertension.
     Has anyone else had this experience and if so, has there been any specific meaning attached to it except, "nothing to be concerned about."? Thanks, Ann.
Jon's note: There is an interesting study of how troponin level is used for diagnosing heart attack at, although it is technical. Another good article is at

Sandy's September 27 reply to Vicki J's September 25, 2004 - Hi Vicki, Thank you, your reply to Vicki sure helped me. I have been so depressed today. I was putting it towards going through hurricane Ivan all day and this week, but it's the heart failure and meds, I know. I'm trying so hard, as you are, to not think too much and not to feel as though I'm dying. Everyone is dying from the day they're born.. I'm just sick and have to trust in myself to keep me healthy! Thank you for your words and good luck to both of you, Vicki and Nancy!

Lori K's September 27 reply to Vicki A's September 23, 2004 - Hi Vicki, I was diagnosed with cardiomyopathy 3 years ago, and had been diagnosed with asthma 5 years before that. When I first saw a heart failure cardiologist, he did a cardiopulmonary stress test (CPX or Vo2max). He wanted to make sure I had true asthma, not cardiac asthma, meaning the problem was mainly my heart. I do have some mild asthma and was originally put on a beta-blocker called Zebeta (like Toprol-XL). After a few years on that my CHF doc switched me to Coreg. I have titrated up slowly to 12.5mg BID. If you feel better on Coreg, its possible you have cardiac asthma, however you may want to check into getting a CPX test done to see if you can tell the difference.
     If you have true asthma, a beta-blocker can aggravate your condition and that may be why your doctors have differing opinions. I chose to try Coreg and titrate up slowly, once every 2 to 4 weeks. I can power walk again 3 to 4 days a week, but my chest is a little tighter from my asthma as well when I am outside due to allergies. As Rosanna Danna always said, "It's always something!" Take care, the docs will get it together, and go by how you feel. Lori K.

Scott B's September 27 reply to Vicki A's September 23, 2004 - Hi Vicki, I just wanted to drop a note to ensure you are fully convinced you actually have asthma. The CHF diagnosis is often confused with athsma because the symptoms are so similar. Have you suffered from asthma all your life? Some CHF suffers can get sidetracked with inhalers when they really need less sodium and/or more diuretic. Thanks, Scott Brown.
Jon's note: We don't know one way or the other, but Scott is right - lots of CHFers are misdiagnosed with asthma and some inhalers can worsen heart failure.

Rachel's September 27 reply to Vicki J's September 25, 2004 - Hi, I am inspired by Vicki's attitude on life in the midst of illness. I have a husband who has cancer of the bowel and has an illeostomy bag. In addition, he had a stroke recently. As a result of the stroke, he has aphasia. He seems to understand sometimes but the most difficult is that he cannot express what is in his mind. We always have a guessing game. He seems frustrated always and recently he does not want to go to the doctor and he gets upset if the pathologist visits for his blood test because he is taking warfarin. I keep on explaining to him but I don't know if he undertands. Being a Christian, I just lift my problems to God.

Shane, September 27, 2004 - Hi, I'm beginning the heart transplant evaluation process and was wondering about something. There are one or 2 symptoms that I've given up trying to explain to my doctor because I just can't make him understand: Overall just not feeling right, and fairly constant ache in chest (not pain as expected, just ache). Especially in the evaluation, do I need to try to make them understand or just not even bother? My first evaluation visit is October 6, so I'm really wondering now what to do or not do. Any advice would be greatly appreciated.

Donna H's September 27 reply to Gatha E's September 24, 2004 - Hi, I think that everyone's suggestions of hand santizing gels are a great idea but I have another suggestion to add. A pastor friend passed this on to me years ago. He was required to shake hands but some people would squeeze so hard that his hands ached afterwards. He told me that he learned to reach out and grasp the wrist/lower arm of the person instead of their hand. That way they couldn't hurt him with their grip. You might still get some germs but it would be less likely. This might just be something to try if you get caught without any santizing gel and feel forced to shake hands.

Donna H, September 28, 2004 - Hi, My husband had his CPX (Vo2max) test last week and the result was a number 8 (ml/kg/minute) which is below the cut-off point of 14 for transplant. I read through everything here I could find on this test but still have questions. Maybe someone here can help me.
     With exercise can this number be improved? I wondered because in one place it shows that athletes have a high Vo2max score so it sounds like the number can be raised. Also, how does Vo2max correlate to EF? His last test in June showed an EF of 10%.
     Last but not least, as he gets closer to being placed on the transplant list, I have many people telling me that we are making a huge mistake because he "probably doesn't really need it." This morning alone, I had three different people tell me stories of people that the doctors said needed a transplant but that are still alive without it. Finally I just told all three of the people that we undertook this course with medical advice, research and prayer, and we truly feel that this is what is best.
     My husband is comfortable with his decision but it is difficult for me to constantly defend what we have been told is the only course of action. Has anyone else facing transplant grappled with this problem?

Jon's September 28 reply to Donna H's September 28, 2004 - Hi Donna, I am sorry to hear your husband is having a hard time of it! Vo2max can be improved with exercise training but it takes time and a lot of exercise, which means you have to be able to do enough exercise to gain the improvement. That's tough when your exercise tolerance is extremely low due to illness.
     I am having a Vo2max test October 1st (Social Security wants it for my disability review), so I will then see how much improvement has come from the past 2 years of strict exercise. I am very interested to see if my Vo2max has actually improved and also how the result relates to my current quality of life. EF and Vo2max have at most a very loose correlation. EF really does not relate in any reliable way to one's ability to physically function - my heart failure specialist agrees with this.
     Heart transplant is a very individual decision because so many factors are involved. It is impossible for anyone not directly involved in the process with you to know whether or not it is time to go for a donor heart. You say you are approaching this with "medical advice, research, and prayer" and that's the proper way to approach it! Keep researching, keep asking medical personnel of all types lots of questions, and keep praying. Make the decision you think is best. Just thank everyone for their advice, and then, unless it actually applies to your specific situation - ignore it. <g> Jon.

Bob L's September 28 reply to Vicki J's September 25, 2004 - Hi Vicki, I read your post and I too love horses. I have never owned one but since I've acquired CHF I now spend some time with a few of them. To keep from being lonely and missing your friend take a look at this web site: Some of it will make you sad but there will also be a great deal of joy as you realize what is being done to rehab these guys. There are all sizes at the ranch and it is a pleasure to see them learn to trust again after what some of them have been through. Keep your head up and may God be with you througth this journey. Bob L.

Pen, September 28, 2004 - Hi, My husband has been feeling short of breath lately and tired a lot. They have done a stress test and said it looks okay. They did say his cholesterol was high at 230 and his blood pressure was a little high at 140/90. They said that may be causing it. When they did the stress test his blood pressure shot up pretty high and he has a lot of PVCs during it. I think he needs to see a cardiologist and maybe a have a catheterization done. He is in good shape and eats right and exercises regularly so he shouldn't be feeling like this. Any advice or information would be appreciated! God bless, Pen.

Russ B's September 28 reply to Shane's September 27, 2004 - Hi, I also have that "ache" thing in the heart and I can just tell that my cardiologists think I'm crazy. The only thing that gave me confidence about my symptom being real was when I stayed overnight at the hospital to have a device implanted. The guy in the bed next to me got to talking, and he explained frustration at that same symptom not being taken seriously. I know it's not heart attack pain, it's just a low grade ache.
     I have heart failure with dilated cardiomyopathy and arrhythmia. One of my cardiologists finally said that it was possible that this was a skeletal-muscular issue caused by the swollen heart rubbing against muscle or bone causing the pain. It made some sense to me.
     After I got the device implanted, it stopped. I suspect because they moved tissue around inside me. They still just smile like I'm nuts when I tell them now it's stopped. <lol>

Patricia M's September 30 reply to Russ B's September 28, 2004 - Hi Russ, I understand your frustration because I have that same ache that feels not quite like a small cramp. My first cardiologist not only thought I was crazy, but acutally got upset with me for bringing it up each time I saw him and told me that it couldn't possibly be coming from my heart, because the cath said I don't have a blockage. For this and many other reasons, I fired him and found a heart failure specialist who used to be a Chief Fellow at the Cleveland Clinic, and he doesn't seem surprised at this ache at all. He advised that it could be that since my heart is so enlarged, it is rubbing against something, much as you supected.
     By the way, let me take this opportunity to thank Jon for encouraging us to find a heart failure specialist when possible. I am more than pleased with the improvement in my care. I am now working with an electrophysiologist also and will have a biventrivular pacemaker/ICD put in probably in November.

Michael, September 30, 2004 - Hi, Since the end of July I feel occasionally needles in my feed, hands and upper body. They come and go. Does anyone have any suggestions? Thanks.

Carla, September 30, 2004 - First of all, thanks to Jon for putting up my bio! It's very nice to meet each of you. Recently I feel like on top of everything else, I'm losing my mind. For almost 10 months, I've thought about my heart - every minute, every day, it's there. I want to wake up in the morning and not think about it. I wish I could just accept it like I accept my bad knee that I've had 2 surgeries on. It's just a weak muscle, right? I'm seriously thinking that I need to seek some counseling, and that I shouldn't be this obsessed with this and it's controlling my life. Any thoughts, or is this normal?

Roger H, September 30, 2004 - Hi to all, I had a stress test done yesterday and the cardiologist was impressed! I made it through the whole thing and passed with flying colors. I was a little tired afterward and he said I had every right to be. There was an EKG before and after, and as he was talking in his little recorder I heard EF said. I asked what mine was and he said 35 to 40%, and that I had a few PVCs, which he said not to worry about.

Caroline, September 30, 2004 - Hi, My father has congestive heart failure and there is nothing that they can do for him right now. Do you know of any support groups that he can go to? My father pays for his own insurance and is taking so many pills. I really need to find a support group for him and my mother. We live in Martinez, California, USA.

Bonnie K, September 30, 2004 - Hello, My mom has been recommended to have a CRT pacemaker. I would like to hear others' experiences with these pacemakers. Thanks for any information.

Chelsie, September 30, 2004 - Hello everyone, School is going good - I guess :-) but I have been increasingly tired lately. Does anyone have any idea what could be causing it? I went to the ER for calf pain yesterday and for my tiredness, and the doctors in the ER don't know what is causing the pain in my leg or my tiredness. Any suggestions?
Jon's note: Have you had your electrolytes checked lately? Do you take non-heart-related meds that could be contributing? I just discovered that was part of my recent fatigue problem.

Chuck F's September 30 reply to Michael's September 30, 2004 - Hi Michael, Many people develop these symptoms. They could be a side effect - not to be confused with an allergic reaction. All medicines have some sort of side effect. It could be as simple as hyperventilation, or many patients with heart failure will sleep with an arm under their head while they sleep on their side. This in turn puts pressure on the nerves in the arms and shoulders causing a tingling, also called parasthesis. It could also be due to to low blood pressure. Either way make sure and bring it up to your practitioner the next time you visit.

Chuck F's September 30 reply to Carla's September 30, 2004 - Hi Carla, I as well have the same problem. I was always very active in life (13+ years in the Army) and now am very restricted on what I can do. This in turn caused a big depression. Please do as I finally did and seek some help. If there is a support group in your area, that would be great. Ministers are great as well but I would recommend starting with your primary care provider as they can guide you in the right directions for your area and sometimes an adjustment of your current medications can be a great help. Most of all I have found this site to be very helpful. Good luck and God speed!

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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