The paperwork never ends The Archives
November 1-15, 2003 Archive Index CHFpatients.com

Patricia's 11-1 reply to Greta's 10-29     my Coreg experience
 
Nora 11-1     being sexually active with CHF
 
Janet T B 11-1     is Sid Kleiner out there?
 
Sheryl C's 11-1 reply to Dan S' 10-31     dry skin routines
 
Jon 11-2     a bit behind
 
Margaret D's 11-2 reply to Bernard Z's 10-31     IVs and edema
 
Ken N 11-2     has anyone used this product?
 
Ruthie A's 11-2 reply to Sheryl C's 11-1     caution on hydrocortisone cream
 
Isabel 11-2     is there right-sided heart failure?
 
Kathy's 11-2 reply to Nora's 11-1     being sexually active with CHF
 
Katherine H's 11-3 reply to Dan S' 10-31     dry skin experience
 
James 11-3     my pacemaker implant experience
 
Barbara 11-3     is this from CHF or COPD
 
Jon 11-3     online surgery webcast Thursday
 
Pam 11-3     hypertension question and for Kate
 
James' 11-5 reply to Nora's 11-1     having sex with heart failure
 
Sue 11-5     do you all have chest pains?
 
Kate's 11-5 reply to Pam's 11-3     bone marrow, chemo
 
Clara D's 11-5 reply to James' 11-3     t-wave alternans testing
 
Jon 11-5     t-wave alternans testing
 
John 11-5     has anyone had a similar post-surgery experience?
 
Isabel 11-5     what is borderline CHF?
 
Joe S 11-5     which doctor should I believe?
 
Steve Peters 11-5     problems returning to work - anyone else?
 
Isabel 11-6     can CHF ever go completely away?
 
Pam 11-9     update
 
Wayne's 11-9 reply to Jon's 11-6     can cardiomyopathy go away?
 
Jon's 11-9 reply to Wayne's 11-9     can cardiomyopathy go away?
 
Louise D's 11-9 reply to Pam's 11-3     high blood pressure experience, questions
 
Joe S' 11-9 reply to Isabel's 11-7     coping with heart failure
 
Sue F's 11-9 reply to James' 11-3     ICD feelings and bypass scars
 
Curt 11-9     how do you get your mind off your CHF?
 
Bill 11-10     any comments from CHFers welcome
 
Pam's 11-10 reply to Louise D's 11-9     how bad is your CHF?
 
Jon's 11-10 reply to Pam's 11-10     spironolactone
 
Diane's 11-10 reply to Curt's 11-9     any tips on losing weight?
 
Kate 11-10     SSD and device page questions
 
Jon's 11-10 reply to Kate's 11-10     SSD and device page info
 
Abigail 11-10     need PH info
 
Jon's 11-10 reply to Abigail's 11-10     PH info that I have available
 
Norma 11-10     seek Greek speakers/readers
 
Sandy's 11-10 reply to Sue F's 11-9     bypass surgery scar experience
 
Jack D 11-10     scallop pie recipe
 
Barbara's 11-10 reply to Louise D's 11-9     my experience & more
 
Paul D's 11-10 reply to Bill's 11-10     cancer, chemo, and CHF
 
Louise D's 11-10 reply to Joe S' 11-5     my opinion
 
Louise D's 11-10 reply to Pam's 11-10     my experience
 
James Allen 11-10     seek peripheral neuropathy info
 
Debbie 11-11     does anyone have pain/numbness in feet/legs?
 
Tom S' 11-11 reply to Bill's 11-10     forget death and more
 
Pam 11-11     thanks for the info & more
 
Peggy's 11-11 reply to James A's 11-10     chemo-induced CHF
 
Patricia's 11-11 reply to Jon's 11-9     I know what you mean
 
Kathy 11-11     seek Mrs. Dash's recipe
 
Greta 11-11     ACE inhibitors & beta-blockers
 
Jon's 11-11 reply to Greta's 11-11     ACE inhibitors & beta-blockers
 
Greta's 11-11 reply to Curt's 11-9     to Curt and Bill
 
Ken's 11-11 reply to Sue F's 11-9     surgery scars & to war veterans
 
Diane 11-12     does anyone else stay cold? & more
 
Catherine L 11-12     can I stop these drugs?
 
Jon's 11-12 reply to Catherine L's 11-12     stopping CHF drugs?
 
Kate's 11-12 reply to Peggy's 11-11     chemo induced heart failure
 
Janet T B's 11-12 reply to Debbie's 11-11     tingling and pain in feet
 
Otis 11-12     can I take NSAIDS for gout?
 
Jon's 11-12 reply to Otis' 11-12     taking NSAIDS
 
Joseph W's 11-12 reply to Ken's 11-11     veteran's experience with VA care
 
Linda B 11-12     seek high-altitude experiences
 
Monica A 11-12     what about stopping meds?
 
Jon's 11-12 reply to Monica A's 11-12     stopping meds is a mistake
 
Joshua Tilton 11-12     SAVER surgery questions
 
Jon's 11-12 reply to Joshua Tilton's 11-12     SAVER surgery resources
 
Tom S' 11-12 reply to Ken's 11-11     veteran's VA experience
 
James Allen's 11-12 reply to Debbie's 11-11     neurontin helps me
 
Catherine L's 11-13 reply to Kathy's 11-11     Mrs. Dash style salt substitute
 
Rick 11-13     exercise and heart recovery questions
 
Jon's 11-13 reply to Rick's 11-13     exercise & heart recovery
 
Steve 11-13     should I apply for Disability?
 
Jon's 11-13 reply to Steve's 11-13     Disability issues
 
Joe S' 11-13 reply to Linda B's 11-12     high altitude experience
 
David Wilson 11-13     losing extra weight helps
 
Joshua Tilton's 11-13 reply to Jon's 11-12     could still use some help
 
Giorg 11-13     what about berberine?
 
Jon's 11-13 reply to Giorg's 11-13     berberine info seems scarce
 
Christine 11-13     is this as serious as I think?
 
Gene W 11-13     question about altitude
 
Peggy's 11-14 reply to Kate's 11-12     cancer and CHF, diet questions
 
Monica A's 11-14 reply to Jon's 11-12     seek CHF doc in Tulsa, Oklahoma
 
Katherine H's 11-14 reply to Steve's 11-13     check into the Family Leave Act
 
Pat R's 11-14 reply to Steve's 11-13     my experience
 
Bill 11-14     update, you guys really helped
 
Norma's 11-14 reply to Gene W's 11-13     experience with altitude
 
Maggie R 11-14     I think attitude is important
 
Tim P 11-14     could sure use some advice
 
Jon's 11-14 reply to Tim P's 11-14     some questions
 


Patricia's November 1 reply to Greta's October 29, 2003 - Hi Greta, I am taking 12.5mg Coreg twice daily (as of August of 2003) and am doing well. As a matter of fact, I'm feeling better than I have in a long time. I started at 3.125mg twice daily, increased to 6.25mg twice daily and now take 12.5mg twice daily. It has really helped me. My EF is a lot better also. Patricia. pgp24815@aol.com


Nora, November 1, 2003 - Hi,Before being diagnosed with CHF, sex was uncomfortable since I felt I could not breathe due to pressure on my abdomen. It's been a year since my diagnosis and I would like to become sexually active again but I am afraid because of my illness. I am afraid I will experience the discomfort in my abdomen again, or become short of breath, or that having sex will speed up my heart rate too much. Any suggestions? I am female in my mid-50s. Thanks. mainestorms@aol.com


Janet T B, November 1, 2003 - Hi Friends, I am trying to contact one of our CHF friends who has frequented this forum but I am having no luck. I don't know if his e-mail address changed or what. Is anyone still in touch with Sid Kleiner? Sid - are you out there? Janet T.B. jtitus@chestnut.org


Dan S' November 1 reply to Dan S' October 31, 2003 - Hi Dan, Here is a routine that I follow for extreme dry itching skin. See a dermatologist for rashes but you can probably use hydrocortisone cream for rashes. Unless you have perspired heavily, only shower every other day. Take a sponge bath on the other days. Use one of those new unscented, for sensitive skin, moisturizing body washes like Dove makes with a soft wash cloth. After showering, dry lightly and put on lotion within 5 minutes of drying. I use Eucerin Dry Skin Therapy if I am putting on old clothes, it is very greasy feeling. For nongreasy, I use lotions by Nivea. Good old petroleum jelly works great at night.
     These are all expensive products, except petroleum jelly, but some of the ones you mentioned are just like throwing away money. Like taking medicine, this must be a regimen done once or twice a day. Dry skin doesn't just go away so you have to prevent problems before they occur. Women have been trained to take care of their skin but often men don't know that much about it. I hope this helps. Sheryl C. cvprehab@hotmail.com
 
Jon's note: Don't forget to increase the humidity of room air in your home!


Jon, November 2, 2003 - Hi everyone, I am having some difficulty keeping up lately. A family member developed acute CHF a few weeks ago, and may be needing heart surgery soon. Naturally, I was elected as advocate through the various doctor visits, echoes, thallium stress test, cath, and soon a TEE as well to be sure surgery is the proper solution. We also have to find a new PCP since this one has blown it all down the line and this is adding a great deal of difficulty to everything.
     Since Alzheimer's is also a component in this case, I am pretty well beat at this point. Anyhow, just be patient: I'll get to everyone's stuff as soon as I can. :-) Jon.


Margaret D's November 2 reply to Bernard Z's October 31, 2003 - Hi, The reason for the use of IV saline is not that simple. Yes, it has salt water, but it is the normal concentration of body fluid. Simply put, you want an isotonic IV solution. That is a solution that does not draw fluid out of the cells, or draw it into the cells. You want to keep it balanced. Water with dextrose in it is not isotonic. Normal saline 0.9% is commonly used. The volume used is another story. Depending on blood pressure or presence of dehydration or degree of CHF compensation, the rate of IV administration may vary. I am greatly simplifying this, but I would suspect that your increasing edema was more likely due to the incorrect meds than the IV solution. mdavis10@tampabay.rr.com
 
Jon's note: Your last statement may be true - BUT - two heart failure specialists have told me that most doctors use salt-solution IVs when they should not do so in CHFers and that such IVs definitely cause edema, often badly. See Dr. Marc Silver's public answer on this here. Let it load.


Ken N, November 2, 2003 - Hi to you all, I have been a heart patient for the past 14 years. To start I had a quadruple bypass 14 years ago. I had a pacemaker fitted 4 years ago and a year ago I was diagnosed with CHF. I am taking all the standard drugs and have no problems with them. The troubles that I have are difficulty breathing at times and a lack of energy. I came across a product called "Oxygen Elements Plus." Has anybody tried this, and is it as good as the advertisements say? kenneth.niblett@btinternet.com


Ruthie A's November 2 reply to Sheryl C's November 1, 2003 - Hi Sheryl, Dan S, Jon, and everyone else! Yes, dry skin is one of the "benefits" of all the meds that we take. There are a lot of products on the market to soothe that dryness. However, a word of caution about using hydrocortisone cream for dry skin itching. Just as with the pills or injection form, hydrocortisone cream gets into your system and can cause fluid retention. Please do not use it unless your CHF specialist has okay'd it for your use. Otherwise you may be relieving one problem but creating new ones. I speak from experience. Ruthie A. rlaba51@yahoo.com


Isabel, November 2, 2003 - Hi, I was wondering is there such a thing as borderline right-sided congestive heart failure with all the symptoms? If there isn't, I need a new cardiologist. isabel_3_1999@yahoo.com
 
Jon's note: Yes, there is.


Kathy's November 2 reply to Nora's November 1, 2003 - Hi, When I was first diagnosed, my doctor gave me written permission to return to being sexually active. Like any other activity, I have to pace myself. I don't use positions which put a lot of pressurre on my abdomen and if I get out of breath, I stop. My partner is gentle and considerate, which should be happening regardless of health and we have a very satisfying sex life. You should be fine. kathyh@linkny.com


Katherine H's November 3 reply to Dan S' October 31, 2003 - Hi, The best way I have found to treat really dry skin is to not towel off. The minute I get out of the shower I lather myself in either lotion (a water-based one) or baby oil and let it sink in. I also don't shower every day. Those 2 things have done more for my skin than any medication. Good luck! kholian@msn.com


James, November 3, 2003 - Hi, I was diagnosed with CHF about a year and a half ago at the age of 33, although it would appear the fork in the road was closer to 9/2000. My cardiologist took me through the medicinal approach - first prinivil, later Cozaar, furosemide, and Coreg. We also explored CPAP treatment for mild sleep apnea. My condition deteriorated and my heart enlarged. He recommended that a biventricular pacemaker be implanted.
     We visited an electrocardiologist who disagreed and suggested we increase dosages on the meds. Then he ran a T-wave Alternans test and changed his mind. The T-wave Alternans test (Jon's note: this info is going out in a mailing this week) compares anomalies in the heart's T-wave with others and arrives at a statistical predictor of a sudden cardiac death. Although still somewhat controversial as tests go, it has been found to be almost as accurate a predictor as a full EP study.
     This past Friday (Halloween) I had a biventricular pacemaker with integrated defibrillator (ICD) inserted. The procedure took about 4-1/2 hours since the first time they ran the ventricular lead it was too close to the phrenic nerve (controls the diaphragm) so they had to back it out and try another vein. They used Versed to put me in a twilight sleep so I was not fully out (as evidenced by my very chatty nature during the procedure and the fact I tried to get up and leave). I have very little memory of the procedure, especially since they upped the dose as I wouldn't shut up. ;-)
     The CRT pacer used to treat CHF is somewhat unique among pacers, only recently being approved by the FDA. It is estimated that quite a few CHFers suffer a form of interventricular conduction issue and might benefit from resynchronization of the ventricles. My unit is a Medtronic, however there are other manufacturers such as Guidant.
     I'm now on day 3 of recovery. I spent Friday night in the hospital and was back home on Saturday morning. I refused pain meds but have since been taking Advil (ibuprofen) with good response. Motion is limited of course, as is any weight I can lift (10 pounds max) but I've been moving my arm and shoulder a bit to at least keep it from getting too tight. The lump in my chest feels more than a bit odd. I've not really felt any improvements yet but it may just be too early for me. Although I was of course terrified of the procedure, in hindsight the worst part was having the IV inserted and I am thus far satisfied with my recovery. I'm just a bit uncomfortable and in pain, but it's bearable.
     If anyone has any questions about the procedure or what I've gone through, feel free to ask and I will endeavor to answer. I did not have the benefit of others' experiences with this prior to my own implantation so I know how it can feel. Hopefully, this brief narrative has also helped those who may read this site regularly. James. jnj@spamcop.net


Barbara, November 3, 2003 - Hi, My husband is a heart/lung patient. He was hospitalized last year with CHF. He has had 2 heart attacks, has 4 or 5 stents in now and has COPD. Recently he has started leaving a bloody (dark) stain on pillows and sheets at night. This weekend it was really bad and I had to change sheets and pillow cases both Saturday and Sunday mornings. Could this be from CHF or more likely the COPD? His doctors (regular doc, cardiologist and pulmonary doc) seem to think that everything is as good as it can get and don't bother with him. He is a smoker (over 2 packs a day). Any info will be most appreciated. barbara.rogers@ngc.com


Jon, November 3, 2003 - Hi everyone, The chat room is on hold until I get my family situation under control - I've test-driven 3 with poor results but sooner or later I'll find a good product. On another note, if you like watching heart failure surgeries, on Thursday, November 6, at 5:30 PM Eastern Standard Time, you can view an SVR surgery online at www.or-live.com/borgess/1136/. Jon.


Pam, November 3, 2003 - Hi, I had my cardiac cath Friday. There were no blockages - my arteries are all clear. The cardiologist has determined that my heart failure is due to hypertension. Now, I have a question for all of you. I have only been treated for hypertension for the last three years. Does that sound a little odd? Three years of hypertension - with difficulty in controlling it, I admit - followed by severe heart failure?
     Kate, can I ask why you were considering a bone marrow transplant? I am wondering because it seems I just had a positive Gallium scan, searching for the reason for my fever, which has been with me for three years. I wonder if the fever had anything to do with the cause of my heart failure. Hugs, Pam. spirlhelix@yahoo.com


James' November 5 reply to Nora's November 1, 2003 - Hi, Well, I'm a 34 year old male so my experiences are a tad different, but I've remained quite active throughout my treatment as witnessed by my 21 and 2 month old children. :-) I've just been implanted with a biventricular pacemaker so things will be a bit different, but I intend to still have intercourse. I think the key is position. Each position places stress (typically weight) on different parts of the body and will wear you down more quickly. Intercourse does not have to be an exhausting experience; that may mean slowing down and even a little experimenting. You just need to find the position(s) that work best for you and work with your partner to ensure a mutually pleasing experience. jnj@spamcop.net


Sue, November 5, 2003 - Hi, Thank you all for the response to my low-sodium cooking advice. I have learned more from you all about CHF than my doc has been able to give me. I went to the doc today because of increased chest pain that cannot be explained. They increased my Coreg to 12.5mg two times a day from 6.5mg once a day. They also have me scheduled for a sleep study test to rule out and apnea, and also a stress test. Do any of you experience chest pain on occasion? Is this just something that we CHF patients just have to live with? Any advice is welcome. sonosue@earthlink.net


Kate's November 5 reply to Pam's November 5, 2003 - Hi Pam, I was evaluated for bone marrow transplant because I had acute myelogenous leukemia. Bone marrow transplantation was still in the experimental stages at that point. I remember I would actually have been in a goverment funded research program.
     My heart failure is, though no one can be certain, most likely the result of high dose chemotherapy given in 6 rounds over a one-year period. People don't realize that much chemo is confined to the veins until it reaches ye old ticker where it is released to flow from ventricle to ventricle, doing - for some - mucho damage. As it was explained to me, the adriamycin I was given was so caustic that if dripped on my arm it would have burned through to the bone. Imagine it bouncing around in your heart. not a good thing.
     Keep the faith. Get second opinions if you are at all uncomfortable with either diagnosis or treatment. Kate. tothymecottage@frontiernet.net


Clara D's November 5 reply to James' November 3, 2003 - Hi everyone, This is in regard to the T-wave Alternans test used to predict sudden cardiac death, which James referenced in his November 3rd post. I have CHF secondary to IDCM with an EF of less than 15% since I was diagnosed 2 years ago. After finding information about the T-wave Alternans test on the Internet over a year ago I asked my cardiologist at Duke about it. He was familiar with the test and it is used at Duke but unfortunately doesn't work for patients like myself who have a left bundle branch block.
     Needless to say, I was disappointed, having hoped to put this worry to rest so that I would be more comfortable taking care of my grandchildren alone, driving them in my car, etc. My cardiologist assures me that my risk of sudden death is slight and I shouldn't worry about it. Fortunately, about that time I learned about the research showing that taking fish oil capsules reduces the risk of sudden cardiac death. I take three 1000 mg tablets each day and my pulse is now steadier than it has ever been, with no skips or double beats. However, if I didn't have a left bundle branch block I would still want to have the test! ncdossetts@aol.com


Jon, November 5, 2003 - Hi everyone, Regarding TWA testing, please note that over 1/3 of CHFers tested had "indeterminate" results in this trial. If you have many PVCs, that's the result you will get. Also, the test is not an actual guarantee of anything. Some people who tested negative did die in the trial.
     An article will go out today about this TWA trial to the mailing list. I am inclined to give conventional risk factors and other tests like EPS as much weight as TWA results.
     Although I don't usually go for sub-group analyses after a trial, I hope someone does some on this trial - it might be interesting - especially on patients taking beta-blockers versus those not, since this test is best done at "exercise" heart rates. Jon.


John, November 5, 2003 - Hi, This is my first visit to this site. I wonder if anyone has had a similar post-surgical experience? Two years after mitral valve repair, I developed an incisional epigastric hernia, with a dramatic increase in a-fib. jalamb@shaw.ca


Isabel, November 5, 2003 - Hi, I am very confused. What exactly did the cardialogist mean when he said I had borderline CHF? Does he mean it will go away eventually? Along with CHF I also have COPD, chronic asthma, diabetes, pulmonary hypertension, bipolar disorder,depression, anxiety and panic attacks. I also have sleep apnea and use a C-PAP machine. isabel_3_1999@yahoo.com
 
Jon's note: He may have meant you have mild CHF.


Joe S, November 5, 2003 - Hi, Which type of doctor does one trust? I went back to the group of cardiologists because of my scar. They told me my heart was very weak because of a very low pulse. Yet, when I take pulse or my PCP does it is okay. This cardiologist would not show me my blood test and his nurse told me my pulse was 55. All my blood pressure tests at home show a strong pulse. Again, who do you think I should listen to? Joe S. jes@gbis.com


Steve Peters, November 5, 2003 - Hi, I am only 2 months into CHF. Being only 53 and having always enjoyed wonderful health, this is really difficult. This site is absolulely great! I have atttempted to return to work this week. I am a supervisor in a production facility and my shift is 12 hours long. The doctor wanted to restrict my return to no more than 8 hours, but I wanted to try 12. I had fatigue and a drop in blood pressure by the second day. My company says that I'm not eligible for disability if I can work at any job. Has anyone else had similar experiences? shpdwcopa@msn.com


Isabel, November 6, 2003 - Hi, I know you are not a doctor, but with your experience do you think CHF can actually go away completely? isabel_3_1999@yahoo.com
 
Jon's note: Yes - but extremely rarely. Such a person would technically remain a "stage C" CHFer.


Pam, November 9, 2003 - Hi, Last month I had an echocardiogram that showed severe left ventricular dysfunction, mitral regurgitation, and pulmonary hypertension. Three weeks later, I had a cardiac catheterization to follow up. The good news is: No blocked arteries, no pulmonary hypertension, no mitral regurgitation. I'm pretty pleased with that.
     I still have cardiomyopathy and my diagnosis is still kind of rough, being severe heart failure. My blood pressure is improving though, my fever of three years is gone, and I'm sleeping much better. I attribute the improvements to a new medication I started after my echocardiogram, spironolactone. My doctor thinks it could be helping my heart get back on track by neutralizing some excess aldosterone.
     The bad news is that I have to go back for another test (gallium scan) that identifies infections, collagen disorders, and cancer. My first test for this was positive, so we're waiting a month and repeating it, to eliminate the possibility that it indicated an infection. If it's positive again, it's biospy time and bye bye to one of my lymph glands! Anyway, that's my update. Thanks for listening! Hugs, Pam. spirlhelix@yahoo.com


Wayne's November 9 reply to Jon's November 6, 2003 - Hi Jon, I hope this finds you feeling well. Just for clarification, is there a distinction to be made between CHF and cardiomyopathy? Should the question be, "can cardiomyopathy go away completely?" whreos@earthlink.net


Jon's November 9 reply to Wayne's November 9, 2003 - Hi, CHF is different than cardiomyopathy as described in The Manual: "CHF stands for congestive heart failure. CHF is not a kind of heart disease. Heart disease is called cardiomyopathy and it's cardiomyopathy that causes heart failure. Heart failure is the set of symptoms that hit you when your heart can't pump enough blood to meet your body's needs."
     So if your cardiomyopathy was correctable by surgery, and you had the surgery and it went well, and you did not suffer any permanent heart muscle or blood vessel damage along the way, it is possible to completely correct cardiomyopathy, yes. A few people's cardiomyopathy may even go away with a viral or inflammatory cause but to escape all heart damage in such cases is even more rare.
     I hope that was what you were looking for; if not, let me know and I'll take another crack at it. ;-) I am sorry for the delay in getting posts up. I am living proof that even a CHFer with a "normal" EF can have a really bad heart day. Jon.


Louise D's November 9 reply to Pam's November 3, 2003 - Hi Pam, Is it possible you had undiagnosed hypertension before you started treatment three years ago? Three years is all it took for me to develop CHF. The difference in your case and mine is that at least you were treated, which means at least you a had a chance to try to beat it. I didn't.
     From July of 1998 when I had my first high reading to April of 2001, I was not treated at all. In fact, I wasn't told I had high blood pressure. I was finally officially diagnosed with hypertension in April of 2001 and was put on a diuretic. A month later I was switched to a beta-blocker, Atenolol, after I complained of chest congestion. At this time, I was also SOB and I had a resting heart rate of 95 BPM. In other words, I had CHF at this point but the doctors didn't tell me I had it until December of 2002.
     So no, I don't think it's odd. I'm curious though as to what your blood pressure was and how it was treated that it could not be controlled? louport35@yahoo.com


Joe S' November 9 reply to Isabel's November 7, 2003 - Hi Isabel, Technically I have had CHF for over 60 years. It was caused by a scarred aorta valve at birth, or by scarlet fever at age five. However, I have felt it all my life and other then a few years it has affected me physically.
     However, also after two trips to two doctors this week, both say I am getting well. However, I will have to remain on a diuretic and watch my sodium intake forever. My lungs, heart and kidneys expanded greatly to compensate for not operating right. Last week was the first time my lungs ever appeared on only one x-Ray. My aorta valve was replaced on March 3, 2002 and it was done right.
     Isabel, I know many diabetics who take insulin just so they can enjoy sweets. CHF people don't have a magic formula - we have to watch our sodium all the time, but in doing so we can have a long good life. I praise God I found this board just when the docs gave me only three months to live. By doing and eating all the things mentioned here, I lived long enough and earned money to pay for the surgery. Also don't fret, you can live a very happy and productive life no matter what. Joe S. jes@gbis.com


Sue F's November 9 reply to James' November 3, 2003 - Hi, I had an ICD implanted on July 2nd. I had a heart attack on 03/01 at the age of 48. To make a long story short, I then had a triple bypass on 04/21 and then had the ICD implanted.
     I am one of the "lucky" ones - I don't have pain from the ICD but I know that thing is there 24/7. To me it feels like someone is in my chest, yanking the thing towards my left armpit. The doctor says it has to "settle" but after 4 months I think it should have found it's place by now?!
     I also experience a strange sensation with my bypass scar. After 6 months it is still very pronounced and red. I have realized that on humid days it is very sensitive. The only way to describe it is "raw." I ask every docotor I see about it, asking what can I do about it. The answer is always the same - see a plastic surgeon. I checked into that and it would mean cutting out the scar tissue, resuturing the area and there is only a 50/50 chance it would help any. No thanks! CountryPhoenix2K@aol.com


Curt, November 9, 2003 - Hi everyone, Man, am I glad I found this site?! Now I don't feel so alone with CHF. Brief history: I am 55 and on March 22 of 2003 I had a heart attack. They placed a stent and I still have one blockage but am told there is enough blood flow around. They tried to open it again last month but it didn't work. However, I was told I have enough blood flow around it.
     My current EF is 36% and I guess that's not too bad. I am able to do most things and try to walk about a mile per day. I do have shortness of breath and at times what I would call a pressure in my chest. It's hard to maintain the diet but I have lost 56lbs.
     Anyway, that's me, and again, thanks for the site. As I said, I don't feel so alone and afraid. Speaking of fear, how do you guys handle that part? I can't seem to get my mind off my CHF! Best regards, Curt. curtishammock@juno.com


Bill, November 10, 2003 - Hi, I guess it is time to stop denying that I am sick and start addressing it. Here is my history: I am 45 years old and have not been very active for several years due to a back injury. I take Oxycontin for the pain and because of the pain I have not been able to exercise like I did before. I work law enforcement and I have managed to stay in supervisory positions that keep me out of the "action" so to speak.
     I survived a long battle with cancer when I was 19 years old, with 3 years of chemo and several operations, but I was able to return to normal and even managed to work construction for 15 years. I knew I was sick and even knew I had an irregular heart beat but my PCP said it was normal and told me not to worry.
     After a bad EKG I was sent to a cardiac doctor and after a few tests including a MUGA, my doctor says I have CHF. He said the right side of my heart is enlarged and I have a 35% EF. I also did a sleep study and it showed that I have sleep apnea. I am waiting for my mask and air pump.
     I am now on Coreg. I just started today at 6.25mg twice a day. I was given the Coreg on Thursday but couldn't bring myself to take them until today. I guess I am writing this because I am so scared! Until I read this site I thought I was going to die within the year! Now I think I can find a little hope in my situation.
     Any advice from someone who has been here would be appreciated. God bless! wmles1@cox.net


Pam's November 10 reply to Louise D's November 9, 2003 - Hi Louise, I may have had undiagnosed hypertension, but it's hard to prove at this point. My blood pressure went through phases where it was quite normal, and other phases when it was totally out of the ball park. For the last two months, it has hovered around 197/120, with an average resting heart rate of 115.
     Some meds never touched my blood pressure, while others gave me awful side effects. To name a few, I've had hepatitis, suicial ideation, and cough, which seems laughable in contrast to suicidal depression. Nothing really got my blood pressure down into a normal range, even with combinations of up to 4 meds. Spironolactone has made a difference. My blood pressure was 121/78 this morning, with a heart rate of 67. Now, that's normal. If anyone knows more about spironolactone, I am interested in learning more.
     In your case, did they know that your blood pressure was normal before your first high reading? What class of heart failure do you have and what stage? Hugs, Pam. spirlhelix@yahoo.com


Jon's November 10 reply to Pam's November 10, 2003 - Hi Pam, Eplerenone might be a better choice for you. See www.chfpatients.com/meds_old.htm#aldactone2 for information on Aldactone, and also www.chfpatients.com/text/RAS.txt and www.chfpatients.com/text/aldosterone_antagonists_2001.txt. The links at the links page also lead to all kinds of good drug info resources. Jon.


Diane's November 10 reply to Curt's November 9, 2003 - Hi, What are you doing to get your weight down? It is hard to lose. Any tips? DH3044@aol.com


Kate, November 10, 2003 - Hi Jon, I am just wondering if you have heard anything from the good folks at SSD since you wrote to them about your improving condition? I'm very much hoping they will still take into account the physical limitations your doctors will surely report to them when asked.
     Also, it sounds like you have ventured into a very hectic time so I hesitate to ask about your ICD/CRT project, but ask I shall. Are you still planning to pursue this and do you have a timeframe? Kate. tothymecottage@frontiernet.net


Jon's November 10 reply to Kate's November 10, 2003 - Howdy-doo, Not a word have I heard from SSA since I sent them that letter. Go figure. The ICD/CRT pacer FAQ idea resulted in a first draft by one of the major device manufacturers that was so unsatisfactory I refused to have any part of it. The person I am working with there however, has moved the project to another department hoping for better results. They should be in touch with me this week and they already have a very specific list of my questions. I assume that they are aware of my response to the earlier draft and will be considerably more to the point with their answers. <g> I hope to see a copy soon.
     Unfortunately, these are questions I really need answered by manufacturer reps and I no longer have direct contact with any of them. That means working through official avenues. With large companies like this, it is incredibly time-consuming and difficult to get direct and honest answers. Luckily, my contact seems very willing but has legal department inertia to fight on that end, so to speak. Manufacturers don't like giving answers that aren't happy answers and I won't accept "happy answers." ;-) Jon.


Abigail, November 10, 2003 - Hi, I am asking for anyone to respond to this e-mail. How does someone deal with having both CHF (left ventricular systolic dysfunction) and PH? Flolan is the drug of choice for PH but for CHF it is contraindicated.What can be done about this? bhashat@yahoo.com


Jon's November 10 reply to Abigail's November 10, 2003 - Hi Abigail, PH is more difficult to treat in every respect than CHF and treatments are much less well-defined than treatments for CHF. That - and because I focus pretty much exclusively on heart failure - is why I only have one page on PH. See www.chfpatients.com/ph.htm. The treatments of which I am aware for PH are listed there. I hope it helps. Remember that a contraindication is rarely writ in stone. You weigh risks against benefits with one illness versus the other, and make hard choices. Due to problems inherent in PH, it is always mandatory to seek out a doctor with experience treating PH patients. Jon.


Norma, November 10, 2003 - Hi, I'm not sure if I'm in the right place, but I have questions and maybe you can help steer me. I'm English but live in Greece. I had a stroke 2 years ago, but I was getting over it. Gradually and eventually quickly I started to get really sick again - breathless, exhausted and with some pain in my chest.
     That was 4 to 5 months back. Since then I have seen cardiologists, had x-rays, blood tests, stress ECGs, etc. Last week I had an angiogram but I still have no diagnosis. I'm on a lot of stuff, including beta-blockers, ACE inhibitors, cholestorol-lowering drugs, and blood thinners. The doctors keep changing them.
     I feel really lousy most of the time now and I'm starting to get a bit lonely. The cardiologists are nice people, but I don't speak medical type Greek and anyway it's not usual for patients to talk up here. I'm lined up for other testing but I don't know what sort. So after all that, I have some questions.
     Is there anyone in this group who speaks/reads Greek well enough to translate some paper work for me? Is there an online group anywhere (if not this one) where I can get a bit of support? Thanks, Norma. houmeri@yahoo.co.uk


Sandy's November 10 reply to Sue F's November 9, 2003 - Hi, My hubby had lots of trouble with his scar in the first year. His docs said they could inject it with something but neither one of us remembers what (maybe a cortisone thing?). Anyway, after 1-1/2 years, his scar no longer bothers him in the heat. It is no longer red, although it is large.
     In the first few months after surgery, he complained about sweating and it irritating his scar. He had no complaints this past summer. Hopefully, yours will be like my hubby's and correct itself with time! :-) Sandy. sandy4014@aol.com


Jack D, November 10, 2003 - Hi, Here's a scallop pie recipe. Skip the salt in your regular pie crust recipe. Use a 2 crust recipe for top and bottom crust. This is suitable for diabetics and those on the Atkins' diet (it won't work for the induction phase or very-low carb). Make the pie dough with your regular recipe. If you use sugar in your regular recipe, substitute granular Splenda. If you want true low-carb, substitute soy flour.
     For the filling:

  1. Heat the butter and whipping cream in the microwave until the butter is melted.
  2. Add the cream cheese and lime juice. Heat for 30 seconds and stir till blended.
  3. If it doesn't blend, heat for another 30 seconds, then stir in cinnamon and Splenda.
  4. Add scallops and apple. Stir until covered.
  5. Pour mix into pie shell and cover with top shell.
  6. Brush shell with melted butter and sprinkle Splenda and cinnamon on top.
  7. Pierce top shell with knife or fork in several places.
  8. Bake at 425° F for 10 minutes, then reduce heat to 375° for 30 minutes or until crust is golden brown.
  9. Serve topped with sour cream.

Jack. maddjak@hotmail.com


Barbara's November 10 reply to Louise D's November 9, 2003 - Hi Louise, I have had high blood pressure for 30 years. I am 56 now so I have had it since I was 26 years old. All those years I took blood pressure medicine faithfully. I was diagnosed with cardiomyopathy in August of 2000. I guess I obtained it from all the years of high blood pressure even though it was "under control."
     My EF is 15% as of January, 2003. Since then my doctor has upped my Coreg to 25mg per day. I also take Zestril and Zocor, although my cholesterol is 136 as of October, 2003. I have also lost 60 lbs and I feel pretty good right now. Some days I am sooooo tired though.
     My arteries seem to be pretty clear, praise the Lord! So, I feel that I have been truly blessed to be here as long as I have. Thanks for listening and God bless. PS. I love this site and come to it every day. Jon, you are doing a fantastic job! tcbbarab@hotmail.com
 
Jon's note: Congratulations on your weight loss!


Paul D's November 10 reply to Bill's November 10, 2003 - Hi Bill, I'm a 44 year old guy who had cancer (lymphoma) in his early 20s, and got radiation and then chemo for several years, so we have a lot in common. In fact, there are a lot of us long-term cancer survivors turning up with CHF as a side effect of that treatment. You are not alone.
     I've got a ton of advice, but I'll try to keep it short. First, CHF is not a death sentence and there is a lot you can do to help yourself. Second, get as much information as possible, but be aware that there's a lot about CHF and particularly about long-term cancer side effects, that the medicos don't know yet. This site is, in my opinion, the best resource for info about CHF.
     For cancer survivors, I recommend the LT-SURVIVORS email list at www.acor.org. Information will give you the ability to make your own decisions and make sure you get the best care available.
     Third, get really serious about an extremely low-sodium diet, and taking your meds properly. My personal experience was that Coreg made me feel worse before it started making me better. I was sleeping hours a day for weeks and weeks, but it was finally worth it.
     Finally, every case is different, and "your mileage may vary" but the sooner you get comfortable with the idea that your life has changed and start dealing with it, the better. Feel free to contact me by e-mail if you want. Best wishes! therealpauld@netscape.net


Louise D's November 10 reply to Joe S' November 5, 2003 - Hi Joe, Were the circumstances different when the cardiologists took your pulse and when you and your PCP took it - same time of day, after a meal, etc...? If not, do you know if there is a reason the cardiologists would lie to you? Do you have good insurance which would allow them to profit from performing another procedure on you? If so, then maybe you should be skeptical about what they tell you. Since the issue here is relatively simple - the measuring of a heart rate - that does not require a specialist's knowledge, I would believe you and your PCP. I assume your measuring device is working properly. Since I'm chronically skeptical of doctors, maybe you should get a second opinion. louport35@yahoo.com


Louise D's November 10 reply to Pam's November 10, 2003 - Hi Pam, It seems as though the you're now taking the right med. I'm glad to hear it's helping. Wow! Your experience sounds pretty scary compared to mine. When it was finally given to me, just one med (25mg atenolol) brought my blood pressure into the 80/60 range. I thought this was too low but the doctor said nothing about it. I felt a lot better so I guess it wasn't a problem.
     My blood pressure had always measured in the below-normal range before that first high reading so of course that first high reading scared me. I don't know if anything has changed much from January of 2003, when according to a heart profiler, I was class 3. Louise. louport35@yahoo.com


James Allen, November 10, 2003 - Hi, I have just been given Coreg. I hadn't seen a cardiologist in 2 years. He was surprised I wasn't on it. I started at the minimal dose of 3.125mg once a day for a few weeks and then went to twice a day. It is hard to remember that ACE inhibitors and beta-blockers may not be taken within 2 hours of each other.
     Does anyone out there have any experience with idiopathic peripheral neuropathy? I've had it for several years and can find little info. The pain is constant in my feet and makes walking a pain, literally. Thanks, James A. jamesallen@gci.net
 
Jon's note: Many people (including me) have no problems at all taking ACE inhibitor and beta-blocker together.  :-)


Debbie, November 11, 2003 - Hi, Has anyone had problems with pain in the legs, specifically in the calves and a numbness or tingling sensation in the feet? I walk 2 miles every morning before work. I seem to be fine in the morning hours, but by afternoon I am very uncomfortable. By the time I get to bed in the evenings, my legs really hurt. Any advice? dlentz7925@aol.com


Tom S' November 11 reply to Bill's November 10, 2003 - Hi, As one of what I believe one of the longer "terminal" CHF survivors on this forum, I have to add my two cents. Forget about death. You only die once or you can live every day. I chose to live every day since being handed a virtual death sentence of 3 days over seven years ago.
     Back then my EF was 15% and I was in really sad shape, when I was diagnosed and treated for a very enlarged heart. I do pace myself and found that when I exceed my limits I suffered with a relapse and so far have only been back in the hospital twice for multiple-day stays so they can pump the fluid off my lungs and most recently from my pericardium. That was fairly recently and I am back to being horizontal and resting so I can stay vertical and breathing.
     My EF is around 20% and I do suffer from fibrillation but then the alternatives aren't too cheery. Good luck and take it easy. Start thinking about living - it can be a whole lot of fun even if you are limited in what you do. bigheart@muchomail.com


Pam, November 11, 2003 - Hi, Thanks for the information on spironolactone, Jon! So far, I haven't had noticeable side effects. I just lost my fever, so now my hands and feet get cold whereas before they never did. I haven't even worn a winter coat for 3 years! However, I think I will now. I do like sleeping much better now! I used to wake up feeling like I'd been dropped off a train. Now I sleep like a baby. Thanks again for the useful information! Hugs, Pam. spirlhelix@yahoo.com


Peggy's November 11 reply to James A's November 10, 2003 - Hi, I was just recently diagnosed with CHF. My EF is 20%. My cardiologist suspects it was caused by adriamycin given to me 8 years ago. That seems like a long time to finally affect my heart.
     I have reached the 12.5mg Coreg plateau and am also on Altace. James said he has trouble remembering to wait 2 hours between taking Coreg and the ACE inhibitor. This is the first I have heard this. I have been on both for about 2 months now and take them both at the same time after supper. Why do you have to wait 2 hours? pferro1@bellsouth.net
 
Jon's note: You do not have to wait 2 hours between these 2 drug classes. You might do so if your blood pressure or heart rate is so low you get exhausted after taking meds.


Patricia's November 11 reply to Jon's November 9, 2003 - Hi Jon, I know just what you mean. After several months of feeling "normal", I had a bad weekend. I could hardly get out of bed. I guess I've been feeling so much better that I have been overdoing it. I hope you are feeling better. Patricia. pgp24815@aol.com


Kathy, November 11, 2003 - Hi, I love your recipes and am geting better and better at low sodium cooking. Now my question is, do you have a recipe for Mrs. Dash's seasoning? That stuff is $3 a jar here and I use a lot of it. I'd like to duplicate it. Thanks. kathyh@froggernet.com


Greta, November 11, 2003 - Hi Jon, About taking ACE inhibitor and beta-blocker together or separately, my pharmacist said if they are taken together, they will cancel each other out. The doc confirmed this and said to take them about an hour apart. Do you have any other info concerning this topic? Blessings, Greta. gjohnson@arkansas.net


Jon's November 11 reply to Greta's November 11, 2003 - Hi Greta, If I am later proven wrong I'll admit it but ... I have never heard anything remotely like this. From the way these 2 drug classes work, I see no way they could "cancel each other out." I would ask my pharmacist and doctor for printouts from the medical literature in Medline (PubMed) backing up their claim.
     Until then, I repeat to everyone - you can take your ACE inhibitor and your beta-blocker together! Jon.


Greta's November 11 reply to Curt's November 9, 2003 - Hi Curt and Bill, I agree that CHF is not a death sentence, but it sure changes your lifestyle; but then that is what life is, a series of changes. If you learn to roll with the punches, you will adapt much easier. Don't fight it. I tried that and it just made things worse. Keep your weight down, eat nutritionally good food, get moderate exercise, and keep a positive attitude. I hope both of you guys have a personal relationship with the Lord Jesus. He is the only one who can make life - no matter what it dishes out - worth living. Blessings, Greta. gjohnson@arkansas.net


Ken's November 11 reply to Sue F's November 9, 2003 - Hi Sue, I had bypass surgery in 1995. I also had the itchy sternum scar problem but it went away in about a year. My ICD went in last February and I feel better with it both physically and mentally. I have had the occasional pulling of wires when I get in awkward positions while doing mechanical work on heavy equipment, but it does not seem to bother me or its operation.
     On a second note, since today is Veteran's Day (it's also past the 11th hour of the 11th day of the 11th month on Flanders Fields), have any of the veterans out there tried to get VA medical benefits? Were any of you successful? Semper Fi! Ken. kenneth.wilson@atk.com


Diane, November 12, 2003 - Hi everyone, I am new to this web site but I am happy I found you. I have emphysema and now congestive heart failure, so I am in the process of learning how to change my life style to adapt to the problem.
     There is one thing I have noticed - that I stay cold and since the weather has changed the best way to describe how I feel is like having ice water for blood. Vistors say my home is warm but I can't feel the heat. I have an electric blanket and when I am sitting at the computer or on the sofa I wear a heating pad to keep warm.
     Also, I feel as if I have wet splotches on my face but when I touch them my face is dry. Has anyone else experienced these problems? Diane R. drene29714@aol.com


Catherine L, November 12, 2003 - Hi, I just saw my cardiologist and was told it's possible my mild idiopathic cardiomyopathy (weak left ventricle) diagnosed a year ago may be gone. For the past 3 to 4 months, I felt as if my heart was beating normally, not irregularly. Then at today's checkup, I had no PVCs and my EKG was normal! I have been on 50mg Toprol-XL and 2.5mg Altace since January. We are going to do an echocardiogram to check my EF and then I'll talk to my doctor.
     I have a burning question. Can one can safely stop these heart drugs? If not, how do we know if my heart is healed without stopping the drugs? Could the drugs be the reason my PVCs are gone, and if I stop the drugs my heart will deteriorate? In any case, I am elated. The best to everyone, Catherine L. gardengirl47@kc.rr.com


Jon's November 12 reply to Catherine L's November 12, 2003 - Hi Catherine, Both the official CHF treatment guidelines and I urge you to stay on these 2 drug classes permanently. The beta-blocker often helps with PVCs. If you stop the drugs successfully, there is a good chance your heart function will deteriorate over time.
     I'm not sure how to answer your question about your heart being "healed." Once your heart "fails" it rarely ever completely "heals." That's because it's not just your heart muscle that was sick - it was a complex array of bodily systems that went nuts when your heart muscle weakened. The drugs actually control some of those bodily systems - systems that have a direct affect on your heart.
     My heart function is "normal." However, I am far from healed and my body lets my know it every day. Yours doesn't, so try to relax and enjoy feeling better. Don't worry about being "healed." It's literally a question of semantics for CHFers and it just doesn't matter in the end. You're as good as you feel. Jon.


Kate's November 12 reply to Peggy's November 11, 2003 - Dear Peggy, I too have adriamycin related cardiomyopathy. I was diagnosed in 1994, 13 years after receiving the chemo. I was developing the cardiomyopathy over time and just became symptomatic with CHF in 1994. When I applied the magic of hindsight, I realized that I had begun having hints of the disease at least 2 years before being diagnosed. Like everyone else today, I blamed much of what I was feeling on stress and overwork. Kate. drekce14450@yahoo.com


Janet T B's November 12 reply to Debbie's November 11, 2003 - Hi Debbie, I also have a tingling sensation in my feet, but it typically comes only when I overdo - like being on my feet a lot during the day. By evening, yes, it hurts. I also notice the tingling in my hands sometimes. I thought it must be related to decreased circulation when I overdo, but don't know for sure. Anyway, the only way it feels better for me is by resting. If I go to bed with sore, tingly feet, I usually wake up in a much better condition. Janet. jtitus@chestnut.org


Otis, November 12, 2003 - Hi Jon, I read the messages all the time and enjoy them, learn from them, and I am thankful for them. I don't remember posting before. My question is, can ibuprofen be taken for gout if you are taking Coreg (25mg twice a day). If not, then why? otisray@peoplepc.com


Jon's November 12 reply to Otis' November 12, 2003 - Hi Otis, All NSAIDS - including ibuprofen - cause you to retain fluid, even if you are healthy. It's due to their action on the kidneys and does not relate to other drugs you may be taking. See Heartbytes for several articles about this. See New CHF Drugs for information on drugs for gout that may actually help your heart failure. Jon.


Joseph W's November 12 reply to Ken's November 11, 2003 - Hi Ken, I have been under VA's medical care for a few years now. My own personal experiences have been just first class from them. My drugs cost me only $7 per month-long perscription. I would advise any vet to go to the nearest VA clinic or hospital and enroll. If you have service connected injuries as I have, it is very easy to enroll. jlw70094@cox.net


Linda B, November 12, 2003 - Hi, Just a quick question for anyone. I have CHF and live in the flatlands, well, maybe some little hills. I'm going to spend a week with relatives in the mountains, a mile high. Should I expect any problems -w ith my health, not my relatives? <g> I forgot to ask the medicos last time I was in the office and in matters like this I find peer information is best!
     Thanks and here's wishing everyone good days. Incidentally, I found two no-salt cookbooks by Donald A. Gazzaniga that are really full of great recipes. lmbanicki@yahoo.com


Monica A, November 12, 2003 - Hello, I recently posted, I think about a month ago. In that time, I was placed on meds for DCM and started feeling much better. During this time, I went through a series of tests and now my doctor is telling me that I'm fine and totally recovered, so he takes me off Zestril and Lasix. I should also add that he believes my DCM was viral in origin.
     Anyway, about 2 weeks after being off the meds and feeling really pleased about being healthy again, I started again feeling the same symptoms (but worse) I originally went to the doctor for before I knew about DCM. Is it possible for tests to be normal when you are on meds? The last time I talked to the cardiologist I was seeing, I told him I was a little confused by the normal tests because I was still feeling really tired, short of breath after exercise and when lying down, dizzy, and still had pain in my chest. He told me that I shouldn't be confused and went on about how my ejection fraction was back to normal. In fact, that's all he talked about was my ejection fraction.
     I feel like I should go to another cardio in Tulsa but would feel silly if these symptoms are pointing to something else besides my heart. Does anyone know if there is a possibility of dilated cardiomyopathy reappearing? Should I be worried that my doctor took me off meds so quickly? Any info would be greatly appreciated. hegelianworld@aol.com


Jon's November 12 reply to Monica A's November 12, 2003 - Hi Monica, See my reply to Catherine L today. Your doctor broke the CHF treatment guidelines, which clearly state to stay on a beta-blocker and an ACE inhibitor even if your heart function returns to normal.
     Please see a CHF specialist. My CHF doc doesn't even want to reduce my drug doses, much less stop the meds, although my EF is also testing "normal." Lots of CHFers are being sent back into heart failure - usually worse than before - by doctors stopping their meds. These doctors just don't get it and they don't understand the difference between being well-compensated and well. See The Archives for the experiences of others. Jon.


Joshua Tilton, November 12, 2003 - Hi Jon, It looks like most of my treatment options have run out. I'm considering SVR surgery. Would you comment on the success rate of this procedure? I'm thinking of using Dr. Lattouf at Emory Crawford Long Hospital in Atlanta, but I really don't know who the most experienced or best results person is. Thanks, Joshua. jatilton@tilda.ws


Jon's November 12 reply to Joshua Tilton's November 12, 2003 - Hi Joshua, See this article for some mortality statistics: www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11807740&dopt=Abstract. If it were me, I would first make sure I am a likely candidate for this surgery because patient selection is critical to success. I would then contact Somanetics for information on potential surgeons. See www.somanetics.com/correstore_cardiologist.htm for a starting point. If you can't find the info on surgeons, e-mail me and I will do some asking. Jon.


Tom S' November 12 reply to Ken's November 11, 2003 - Hi, I kind of figured having your sternum split was no picnic even after a healing period. I have been using VA benefits for the past 3 years and I am only sorry I didn't do it sooner. I have the good fortune of having a first rate VA hospital (Salisbury, North Carolina) about 60 miles away and it is an easy ride for me, almost all on the interstate highway system. There is also a VA clinic that is closer but I prefer to use the hospital because it has everything I need there.
     So far I get all my meds there except Coumadin, and my copay is $7 per script for a 30-day supply and $21 for a 90-day supply. They mail my meds to me and it is a fairly automated system and I have only been left in the lurch once when the doctor screwed up and forgot to order my potassium. I am required to make quarterly visits for checkups by the doctor, each of which costs me $51.
     My only gripe is they have stopped providing testing strips for my Glucometer, which is a pain but since I am covered by Medicare I can usually get them for next door to nothing. All in all I would say it is well worth it. Some veterans get their meds for free. VA also takes your financial situation into consideration when determining if you have to pay. Some vets also have a ceiling on their copays of around $900 annually.
     My wife and I can even be buried for free at a national cemetery and recently my son's-in-law dad was buried at Salisbury. Unmarried children can also be buried with you. I also received a free eye exam and a pair of glasses only cost me $10 for the coating on the lens, and there was a nice choice of frames - all for free. I understand the VA also provides orthopedic shoes and hearing aids for vets who need them.
     I hope this helps. By the way, I was a Navy Corpsman attached to the Marines back in the 1960's. Semper Fi, Ken. bigheart@muchomail.com


James Allen's November 12 reply to Debbie's November 11, 2003 - Hi Debbie, See my message just above yours. Also, I take 900mg neurontin in the AM and the PM. The upper limit per day for this med is 3600mg per day. I am thinking of upping my dose to 2700mg per day. jamesallen@gci.net


Catherine L's November 13 reply to Kathy's November 11, 2003 - Hi, Thanks Jon, for the feedback. I'll stay on my meds. Here is a recipe for a no-salt herb blend:

Combine all ingredients. Use back of a spoon to crush small amounts at a time. Makes 3/4 cup. Enjoy! Catherine L. gardengirl47@kc.rr.com


Rick, November 13, 2003 - Hi Jon, You sound well informed so I will make my question easy. When would you consider somebody fully recovered from CHF? I have also read that you lifted weights in the past. My doctor has told me under no circumstances am I to lift weights because of the stress on the heart. Why is it that your doctor said you could lift weights lightly then? Just curious. e.brents@comcast.net


Jon's November 13 reply to Rick's November 13, 2003 - Hi Rick, My doctor didn't say I "could" lift weights; he told me that I "should" lift weights and recommended a specific plan that was actually tougher than what I do now. He recommended this because for most CHFers who are class one or class 2, it's good for you! See www.chfpatients.com/faq/exercise.htm#resistance_training.
     Personally, I would say that a person has "fully recovered" from CHF when they can do everything they could do pre-CHF (adjusted for age) without physical consequences. If that's not what you're looking for, let me know and I'll try to rephrase it. :-) Jon.


Steve, November 13, 2003 - Okay, Pam has been a help but I'm really new to CHF and am struggling in what is ahead. I've not received much information from the docs except they are optimistic that meds will help. My EF in the original hospital stay was 20 to 25%. That was in September. Another eco is scheduled for December.
     I'm back at work and really struggling with fatigue. My blood pressure dives when I get too tired and I suffer from chest pressure. Jon, do most people attempt to work through the initial treatment times? I'm afraid I'm hurting myself by working too long hours. I cannot work with restricted hours per company policy. When should I consider disability? What can I expect in the next 6 months? Lots of questions. This really has me screwed up. shpdwcopa@msn.com


Jon's November 13 reply to Steve's November 13, 2003 - Hi Steve, A 12-hour shift is a long shift for a CHFer. Combine that with the stress of overseeing production and you have a very tiring job for a healthy person. If there is any in-company transfer possible for a person with your experience, I would look into it. It takes 6 months to get a payment after applying for Social Security Disability so if you foresee problems working down the road, I would seriously consider applying soon.
      However, I don't know any of your test results or CHF cause or medical history, so I certainly can't give decent advice. If you want to e-mail me some more info, I'll give what advice I can but situations like this can be pretty complex, depending largely on how you "feel" and what your job entails. Jon.


Joe S' November 13 reply to Linda B's November 12, 2003 - Hi Linda, There are advantages to high altitudes. I live at 5,400 feet in the eastern Sierras. The clean air makes up for the other problems. I couldn't live in a high humidity area for long. Good luck and don't worry. Joe S. jes@gbis.com


David Wilson, November 13, 2003 - Hi, I just wanted to give an update. I had gastric bypass surgery 10-01-2003. I went to the doc's Tuesday. I have lost 38 pounds and I feel much better. I may even try to go to work part-time. Losing weight if you are heavy really helps your heart. I now weigh 270 pounds and my goal is 169, which will be very skinny for me. I eat a low-fat low-carb diet. I try to get 60 to 80 grams of protein a day. It helps because with this surgery you just can't eat much and don't have much of an appetite. I urge anyone who is heavy to lose weight - it is excellent therapy for your heart. davybwilson@webtv.net


Joshua Tilton's November 13 reply to Jon's November 12, 2003 - Hi Jon, Somanetics didn't provide me with much. Must be my pooter. Do you have any names? Thanks, Joshua. jatilton@tilda.ws
 
Jon's note: I e-mailed someone there and will e-mail you with any info they send me.


Giorg, November 13, 2003 - Hi, Has anyone tried berberine? It seems a very good herb for CHFers. Check out www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12860219&dopt=Abstract. Shall we trust herbs? The trial is so small as always happens when it's about herbs. God bless you all. giorgclunei@hotmail.com


Jon's November 13 reply to Giorg's November 13, 2003 - Hi Giorg, I honestly had not even heard of it so I very much appreciate the heads-up. A quick review told me that intravenous berberine can reduce ventricular arrhythmias, slow heart rate and decrease pressures in the heart as well as lower blood pressure. The Chinese idea of "conventional" therapy in the trial you posted did not include a beta-blocker. It's hard to say if these effects would be the same in most properly treated CHFers today - who do take a beta-blocker. That abstract does not give any numbers and I don't have access to the full-text article.
     Berberine may be a good idea but it seems that IV berberine has mostly been beneficial and I don't know how that translates into oral doseage. Try www.thorne.com/altmedrev/fulltext/berb.html for some more info. From what I read, the concentration of berberine used in the herbal forms is critical, and that is unregulated in the USA.
     There have been quite a few animal trials - maybe some more human trials will be done soon. Let us know if you find more about it. Jon.


Christine, November 13, 2003 - Hi, I just came across this web site looking for information. My father called me and said that his doctor asked him to get his affairs in order. To me that says the end is near. He has been a diabetic for a very long time.
     Now at only age 58, he seems to be falling apart. He says his kidneys are failing and that he has a weak aorta, along with two complete blockages and one 50% blockage. The doc says he's not a candidate for surgery, but I don't know why. With this outlook I wonder if death is around the corner or not. I have plans to move to his neighborhood to help him out and to be there for my mother.
     Does anyone else know if this is very very bad or just something that could be contained? I'm really worried about him. Thanks for your time. pink_playdoe@yahoo.com
 
Jon's note: First find out why he isn't considered for bypass or at least angioplasty; and what is being done for his kidneys.


Gene W, November 13, 2003 - Hi, I rarely post here although I read the forum regularly. I have a question regarding CHF and altitude. I have CHF, diabetes, asthma, COPD, peripheral neuropathy, and hypothyroidism. I am 58 years old and have spent my whole life in Colorado. I have lived at 6000 feet altitude for 55 years. I now have to be on oxygen when I go to altitudes above 7000 feet.
     I spent the last 2 weeks in Las Vegas and Los Angeles. The travel was by car and the hours on the road were long and hard. During the time I spent at those lower elevations, I noticed a remarkable improvement both in how I felt and in how much I could push myself. On the return trip, I began to feel poorly and noticed that we were nearing 4000 feet altitude. By the time we reached my 6000 foot high home, I did not feel well at all, but have to admit I felt the way I have felt daily since my heart began to fail.
     My question is whether anyone else has had a similar experience and if there is anything I can do to feel more like like I did at sea leval. Moving is out of the question, but I really miss the energy and stamina I enjoyed on the trip. fgalaxie406@yahoo.com


Peggy's November 14 reply to Kate's November 12, 2003 - Hi, My hindsight told me that smoking was masking CHF symptoms for about a year. I thought my shortness of breath and pounding of my heart on a 5-block walk was caused by smoking. Even when I told my doctor, he didn't seem overly concerned. I have since stopped smoking after 27 years!
     Actually being diagnosed with CHF was accidental, or maybe divine intervention. I had to go to a new oncologist and he was not taking routine chest x-rays like my other oncologist. He finally ordered one on my third visit after I called him on it. That was when he said it appeared that my heart was enlarged. He also said that a prior echo (2-1/2 years earlier) showed an enlarged left ventricle! Well, bowl me over with a feather. Do you think I got that information?
     Off he sent me for a CT scan and echo. I almost didn't go for the echo since I was told that CT showed everything was fine. Does cardiomyopathy show up on CT scans?
     I have been following the low-sodium, lowered-liquid rules. I have been weighing myself each morning. This is super-tuff! This chocoholic has discovered that many chocolate bars are very low sodium. Imagine my delight but I am also overweight. Does anyone have any suggestions on what kind of diet you can follow to lose weight and do the low-sodium thing too. I am a little depressed that I can't eat salt but to give up the "fattier" things in life is really depressing. It seems the lower sodium stuff is higher in fat. pferro1@bellsouth.net


Monica A's November 14 reply to Jon's November 12, 2003 - Hi Jon, Thanks so much for your prompt response and advice. I'm on the search now for a CHF specialist in Tulsa. Does anyone know of any here? hegelianworld@aol.com


Katherine H's November 14 reply to Steve's November 13, 2003 - Hi Steve, When I was initially diagnosed and for another 16 months until I got my biventricular pacer, I too dealt with extreme fatigue. Where I work (public community college) falls under FMLA and they were required, once my doctor filled out a form, to let me have shortened hours as needed. I would think where you work is also required by law under FMLA to give you some options. If your Human Resources department isn't willing to help you out, get online and explore FMLA (Family Medical Leave Act) and your rights. You do have them. kholian@msn.com


Pat R's November 14 reply to Steve's November 13, 2003 - Hi Steve, I just thought I'd put my 2 cents in, but first my background. In looking back on my time sheets, my problem started mid-October, 2000. I thought I was just fighting a bad cold or flu since my wife and kid were. By mid-March of 2001 I started going to the doc and got the first of 6 or so sets of antibiotics, which didn't help.
     That May, I started with narcotic cough syrup because I had trouble sleeping due to cough. Some nights I had to sleep in an armchair with a pile of pillows to lean forward on, tilt sideways a little bit, and filled with fluid. I was short of breath and weak most of the time. My doc said I didn't look that sick! He talked of an x-ray showing little cottony looking stuff at the bottom of my lung. A different doc at the same clinic gave me more antibiotics and cough syrup.
     July first, I felt really bad and took generic sudafed. I had filled a bath towel with mucous, some red, and was wheezing badly. I toughed it out till Monday. My wife called the on-call doc about 7:00 AM and asked if we should wait till 8:30 AM or go straight to a hospital. My regular doc sent me to the hospital, where I had an echo, showing an EF of 20%. My oxygen saturation was 83%. They gave me IV Lasix and sent me to the cardiology floor. Lasix took 20 lbs off me in the next three days. I had a cath, showing an EF of 25% and was sent home Friday. The nurses said I didn't look that sick. I saw new docs (cardiologist and internist) Monday and went back to work.
     I have a desk job computer programming. As Jon says, every body differs but I think I made a big mistake by going back so soon. I had the option of company disability with little waiting. I was really dumb about IDCM and CHF. I wish now I had gone on disability for 6 months to a year and rested the first couple of weeks, then started a walking program when it was cooler. Heat and humidity knock me down. I think if I had done so, I would be years ahead of where at now.
     I chewed up most of my sick leave in fall/winter 2001. An echo in Februart of 2002 showed an EF of 30%. I was taking maximum recommended doses of the usual CHF drugs but still felt like something the cat drug in. Coreg sent my blood sugar to 300+ so I raised my glucophage and amyral dose (bad for CHF) and in autumn of 2002 I started Lantus. In spring of 2003 an echo showed my EF from the high 40s to low 50s. I still did not have much energy, so I dropped my Coreg dose by half and did feel better but no way like before CHF.
     A November echo this year still shows my EF somewhere around 50%. Some days I feel a lot better than others but if I overdo it I will pay later. I handle an 8-hour work day pretty well behind a desk. I imagine 12 hours on your feet is a killer. My advice (if you can afford it) is take a big block of time off, like 6 months and build your stamina up, enjoy family, friends, and pets. Remember, you didn't get this way in a day so don't expect to get done fast, if ever. I'd settle for being half my former self now and I'm just 49! Thanks Jon, for this site. I wish I had found it a year earlier - I would have done things lot differently. Pat R. prothlauf@aol.com


Bill, November 14, 2003 - Hi, Well, it has been a week since my doctor told me I had CHF. I have been spending time reflecting on my life. Also, I have been talking with loved ones about our life together. I started Coreg and increased my blood pressure meds as directed by my doctor. My blood pressure was down from 178/115 last week to 138/78 last night. My feet do not feel as if I am walking in bags of water.
     Thanks to this site and to the people who e-mailed me, I believe I will survive this condition, maybe even learn to enjoy life again! I think it would be great if doctors that make these kinds of diagnoses were to give the patient this web site address. The doctors do not seem to have the time to give patients the info they need. Anyway, I just wanted to give a brief follow-up and to say thanks to all the people who responded to my post. I plan to visit this site often! wmles1@cox.net


Norma's November 14 reply to Gene W's November 13, 2003 - Hello Gene, I have always felt much stronger at sea level. That is another reason, besides the weather, that I winter here in Florida. In Canada, going to our cottage or to my sister's house, which are both at high elevations, I begin to feel weak and ill within a couple of hours. The only thing I think would help is carrying around oxygen, but that is a nuisance. If you cannot move though, this may be your only way to experience a decent level of energy. Good luck. Norma. normadroz@aol.com


Maggie R, November 14, 2003 - Hi, I just returned from a visit to my friendly CHF doc. After listening to me complain about being so tired and that I felt I was going downhill, he as much as told me that I was a healthy lady whose life is being messed up by heart medication!
     He takes a special interest in me since he literally brought me back from the brink of death less than 2 years ago. He cut my Coreg back from 6.25mg twice a day to 3.125mg twice a day. When I asked about the target dose (which I gleaned from this site), he said that he treats the individual and if I'm feeling poorly and have no other symptoms, he wants me to feel as healthy as I am!
     He says as long as my Lotensin and spironolactone are doing the job, I should feel better. I'm going back in 2 months for reevaluation. I felt better as I left his office. I'm thinking that attitude is a big part in dealing with CHF. When I asked him about flying to Turkey for vacation, he said my biggest concern should be with terrorists rather than heart problems. I'm feeling blessed. Maggie. madmaggie@yahoo.com


Tim P, November 14, 2003 - Hi, I was diagnosed with DCM, CHF and LBBB about 3 weeks ago. My doctors keep saying I should live life like normal, except no lifting over 10 lbs for the next few weeks and no heavy physical exertion.
     I have had to do a lot of research over the past few weeks because they really haven't told me much. I was diagnosed after going to my family doctor for extreme fatigue. They have not told me what my EF is, pretty much they have only told me that my case isn't extreme. I've been on Coreg and four other medicines; I can't even think of what they are right now. Two weeks ago my PCP upped my Coreg to 6.25mg twice a day from 3.125, then my cardiologist backed it down again this week.
     They are saying I should go to work as normal, but I don't feel very functional. My mind is fuzzy, I have a hard time going up steps, I get dizzy, and the past week or so I have been having a very hard time breathing. My cardiologist knows all this and said it will probably just take some adjustments to medication and I'll be fine. Well, I don't feel fine.
     I'm tired of trying to get through the day at work feeling like my body just wants to shut down. I work in a technical field that can actually be somewhat demanding physically at times, so I don't know how I'm going to deal with this long term and my doctors don't seem to have any answers other than "live life." Fortunately, my employer and my wife have been very understanding thus far.
     Any suggestions on what to do next? This waiting game of experimenting with medication and trying to live my everyday life while being totally exhausted and having a hard time just drawing a breath is really miserable. Tim. beacon@yougothere.com


Jon's November 14 reply to Tim P's November 14, 2003 - Hi Tim, What caused your CHF? Do you have any other health problems? Do you have any heart valve leakage? Any blocked arteries? Do you take an ACE inhibitor and at what dose? What is your QRS interval (see www.chfpatients.com/implants/pacemakers.htm#ekg)? Perhaps your left ventricle is contracting too late to keep your heart's chambers working as a team, and if your QRS interval is 130 milliseconds or longer, a CRT pacemaker might help. You also need to find out what your EF is.
     Finally, get your doctors on the same game plan for your treatment. Frankly, I won't let my PCP do anything to my heart failure treatment - only my CHF doc. If you don't know the answers to these questions, you need to write them down and get your cardiologist to answer them in plain English. Just a note - if you find out a valve is leaking, get the degree on a scale of 1 to 4 - not mild/moderate/severe.
     Don't give up. I know this all sounds very complicated and you're too tired to deal with it. However, we really do usually adjust to meds after a time. Be sure you weigh yourself daily and keep edema at bay by eating low sodium. See The Manual for one-stop shopping for heart failure information. I've had CHF for 9 years and I tell you that you can make it - just keep learning and never give up! Jon.


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

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