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

Jon 12-3     am moving very slowly
 
Beth 12-3     glad to make it this far & more
 
Dan's 12-3 reply to Craig's 11-28     it has to be a team effort
 
Marly's 12-3 reply to Curt's 11-29     supplements sources
 
Tham Wai Keong 12-3     supplement suggestion
 
Willie's 12-3 reply to Jon's 11-29     I'll ask my doctors
 
Lane C's 12-3 reply to George's 11-26     ask your doctor
 
Tim P 12-3     update
 
Susan L's 12-3 reply to Catherine L's 11-29     Toprol-XL, and Inspra question
 
Louise D's 12-3 reply to Peggy's 11-24     memory problems
 
Catherine L's 12-3 reply to Jon's 11-29     so I should,...?
 
Scott Brown 12-3     to Jon and Craig, and more
 
Vonda 12-3     does anyone have COPD and CHF?
 
Jack D's 12-4 reply to Tham Wai Keong's 12-3     ribose
 
Jon's 12-4 reply to Jack D's 12-4     possibility
 
Donna V 12-4     cholesterol and diet questions
 
Robert 12-4     seek CHF doc in New York City
 
Kevin B 12-4     nice not to feel so alone in this
 
Sharon L's 12-4 reply to Beth's 12-3     and to Evelyn
 
Darric 12-4     it's been a rough week
 
Catherine L 12-4     medical news story on television
 
Jack D's 12-5 reply to Jon's 12-4     diabetics need to be aware
 
Peggy 12-5     had my first CHF episode, I think
 
Anne 12-5     seek CHF doc in central Florida
 
Pat W R's 12-5 reply to Donna V's 12-4     cooking style, update
 
Paul D 12-5     has anyone had lichen planus?
 
Paul D 12-5     more low sodium products at Safeway
 
Pat Hicks 12-5     any ideas where I go from here?
 
Mike 12-5     are free weights okay?
 
Jon's 12-5 reply to Mike's 12-5     free weights
 
Carrie 12-5     does anyone have any advice? & more
 
Ruthie A's 12-8 reply to Pat Hicks' 12-5     a CHF specialist is a good idea
 
Jack D's 12-8 reply to Paul D's 12-5     low sodium tomato sauce
 
Joe S 12-8     some advice
 
LaRae's 12-8 reply to Jon's 12-3     please explain
 
Jon's 12-8 reply to LaRae's 12-8     Coreg and Aldactone
 
Tracey 12-8     have some questions - EF, being "cured" & more
 
Jon's 12-8 reply to Tracey's 12-8     EF, being "cured" & more
 
Robert 12-8     there is hope
 
Jon's 12-8 reply to Robert's 12-8     options
 
Jack D's 12-9 reply to Jon's 12-8     alternative therapies
 
Pam 12-9     have some questions
 
Jon's 12-9 reply to Pam's 12-9     one opinion
 
Tham Wai Keong's 12-9 reply to Jack D's 12-4     I think these are of benefit
 
Jon's 12-9 reply to Tham Wai Keong's 12-9     another perspective
 
Lavon 12-11     seek financial aid buying drugs
 
Pam's 12-11 reply to Jon's 12-9     answers and questions
 
Jon's 12-11 reply to Pam's 12-11     possibilities
 
George G's 12-11 reply to Lane C's 12-3     questions about alcohol
 
Jon's 12-11 reply to George G's 12-11     alcohol, Coreg and diarrhea
 
Jan S 12-11     what about an EF that is too high?
 
Craig B 12-11     what can I do about depression & anxiety?
 
Jon's 12-11 reply to Craig B's 12-11     one possibility
 
Lynn 12-12     I have a lot of questions
 
Maggie's 12-12 reply to George G's 12-11     supplements really helped me
 
Pam's 12-12 reply to Jon's 12-11     why eplerenone?
 
Pat W R's 12-12 reply to LaVon's 12-11     financial assistance with meds
 
Pat W R's 12-12 reply to Craig's 12-11     coping with this illness
 
Laurie 12-12     how do I quit smoking? & more
 
Jim 12-12     my dad died
 
Kat R's 12-12 reply to George G's 12-11     drinking and CHF experience
 
Donna V 12-14     raising Coreg dose & more
 
Tom S' 12-14 reply to Laurie's 12-12     kicking the habit
 
Sheryl C's 12-14 reply to Laurie's 12-12     kicking the habit
 
Peggy's 12-14 reply to Craig B's 12-11     coping with anxiety
 
Blanche's 12-14 reply to Jim's 12-12     condolences
 
Joanne R's 12-14 reply to Jim's 12-12     condolences
 
Lane C's 12-14 reply to Jim's 12-12     condolences
 


Jon, December 3, 2003 - Hi everyone, Well, I have something - I think it's a sinus infection. I'll be seeing my family doc tomorrow morning about it. I will be slow getting anything done for awhile. Obviously I am way behind on posts and e-mail. To top it off, I have 2 other doctor's appointments and an MRI this week due to knee problems. Ain't life fun?! <g> Jon.


Beth, December 3, 2003 - Hi, Today is my 52nd birthday. I wasn't sure that I was going to see it following my diagnosis of DCM in September. I had just suffered a life threatening arrhythmia called Torsade de Pointes and had almost died. Luckily I was in the emergency room when it happened. During my hospitalization, doctors began running tests and discovered that I had DCM. I had been treated for ventricular tachycardia and PVCs for the past 24 years and had been taking Quinidex during the majority of that time. Has anyone heard of Quinidex causing DCM?
     I now have a variety of CHF symptoms and am still unable to return to work. I have tried Coreg but had difficulty with side effects. I've had problems with a number of medications. My current meds include Lopressor, Lasix and Atacand; all the doses have recently been increased.
     I have also had problems with dry and brittle hair. It's been going on for 6 to 8 months. I had not associated it with CHF until now. This web site is so helpful. I have learned so much. Thanks for being there! beegee_187@hotmail.com


Dan's December 3 reply to Craig's November 28, 2003 - Hi Craig, Jon's response to you was right on target! I have changed my PCP twice in the last year. One gave me a beta-blocker (atenolol) that nearly killed me in 6 days and his only response was for me to stop in and pick up another beta-blocker. The second doctor placed me on Avandia full well knowing I had CHF and diabetes, and that I was on insulin. After researching Avandia on the Internet and talking with my pharmacist, I quickly dismissed the doctor and sought a third PCP.
     At Jon's recommendation, I got a second opinion about a pacemaker recommendation from a CHF specialist listed on this web site. He quickly dismissed the idea of a heart transplant and pacemaker, instead placing me on a low sodium diet. I have since dropped 40mg Lasix, 300mg Avapro, 40mg Accupril and 0.25mg Lanoxin. My blood pressure is much lower - maybe too low at times - and the diet has not been too hard to follow.
     I believe that you and your doctor are a team, that you are the only person able to capture the day to day symptoms, blood pressure readings, and sodium and liquid intake. If I am going to work my tail off to follow a diet, exercise and take my meds faithfully, then my doctor had better listen to me. He is the trained medical doctor that I need, but he can be replaced. My pharmacist is also very important because he hears all the complaints and side effects from his clients. dlshick@yahoo.com


Marly's December 3 reply to Curt's November 29, 2003 - Hi, I get my taurine and L-carnitine from The Rockland Corporation (membership in "Reach for Life" required). Their e-mail address is mail@trccorp.com. If you do order from this source, can you cite me as your referral by mentioning my name? Marlito Cardenas and my membership is number 26018. Good luck! mcardenas@pacific.net.ph
 
Jon's note: A google.com search will turn up hundreds of online ordering sources that don't require membership as well.


Tham Wai Keong, December 3, 2003 - Hi, I believe a very innovative and upcoming supplement for heart failure that appears to have been overlooked here is ribose. Ribose appears to be unique in its mode of action and benefits in that it works at the cellular level independent of oxygen, making it useful for ischemic tissue - unlike CoQ10 and L-carnitine. Ribose is typically used by bodybuilders and can be obtained at any health food store. Tham@boxfrog.com


Willie's December 3 reply to Jon's November 29, 2003 - Hi Jon, Thanks for giving me a good question to ask the doctors when I go for follow-up on December 10th. The Heart Group of Lancaster, Pennsylvania are my cardiologists and that is where the CHF clinic is. They do have nurse practioners that you see in the clinic along with your doctor. I will ask them the question that you suggested. Thanks once again for the site and keep the faith. wamcc50@aol.com
 
Jon's note: The faith keeps me!


Lane C's December 3 reply to George's November 26, 2003 - Hi, I have CHF and IDCM. My doctor told me "No" when I asked him about even an occasional beer or glass of wine. There are some fair non-alcoholic beer products on the market, I buy Coors here in Dallas. In cases, the alcohol is like a poison to the heart. You need to check with your doctor and see. I would not drink anything alcoholic until then. Better safe than sorry. fastlanedelivery@flash.net


Tim P, December 3, 2003 - Hi, I appreciate all of your replies and e-mails, all very kind and wise. Here's what's gone on over the past couple of weeks. I went totally off my meds on Tuesday two weeks ago. That night I ended up in the ER, mostly because of this hematoma I have developed as a result of the heart cath. The ER doc jammed a stethescope on that thing, just about making me pass out. I actually swore at him it hurt so much. He then proceeded to tell me that the lump and pain was "nothing" and that my other symptoms (shortness of breath, dizziness, chest pain, etc.) were all in my head. I left that hospital and will never be back. It is 4 miles down the road from me.
     The following day I felt great, better than I have in months. The day after that, not so good. My blood pressure shot up to 160/110. I felt really crummy. So I decided to start taking my meds again, on my terms. I ditched the Zoloft. I started taking all my meds in the evening before bed. I started sleeping better and my days were much better. My blood pressure slowly came down and it's now about 125/70. My heart rate has been and still is abnormally high; about 100 bpm at rest.
     Anyway, I now have a new family doctor that my wife found for me, in a city about 40 miles away. My first visit with her was great. I learned more from this very caring family doc in one hour than I learned in days of being in the hospital and multiple visits with my other docs. She immediately ordered an ultrasound on the very painful lump that the ER doc said was nothing. They found a rather large "pseudoaneurism" where a secondary artery was nicked from the cath procedure. It is to be removed this Thursday.
     She also has referred me to a new cardiologist/specialist who is former Navy and formerly George Bush Sr.'s cardiologist. I have the utmost confidence in my new family doc's judgement, so I am at peace with this new guy. I'm confident he's as good as she says he is.
     Anyway, another thing my family doc said (she seems to be pretty knowledgeable about cardiomyopathy) was that it appeared by all accounts that I don't have DCM, but the other type where the walls of the heart are thickened rather than thinned out from enlarging. This would jibe with what they found in the ER two weeks ago, where they took a chest X-ray and said my heart looked normal size.
     Anyway, who knows where this will go. I just got sick of no one listening to me and telling me, "It's all in your head." Yeah? Then I'll trade bodies with you and we'll see how you feel! My fast pulse worries me a bit. Like I said, it's about 100 at rest, at times as high as 125 or more just doing something simple like walking to the bathroom.
     Anyway, thanks for your support. I told my new doc what I had done with the meds and she said that's fine for now as long as I am taking them. She said that there are hundreds of med combinations out there and we need to find one that really works for me. Gee, if only my old docs would have told me that, they might still have me for a patient.
     My old family doctor's office called last week to remind me of my one month follow-up. They were a bit shocked when my wife told them, "Sorry, but he won't be seeing Dr. X anymore, he has a new doctor." Oh well, not my problem. As far as I know, no problems were encountered getting records transferred. That's about it. I'm still just trying to get through one day at a time. Tim. beacon@yougothere.com


Susan L's December 3 reply to Catherine L's November 29, 2003 - Hi Catherine, I am on Toprol-XL and recently increased the dosage to 150mg. I have low blood pressure (90/60 or so). If your doctor approves it, if I were you, I would be inclined to reduce my dosage to alleviate some of the side effects. I understand your hesitancy, however.
     My cardiolgist wants to start me on a new drug that is just being approved in the US, called Inspra (eplerenone). Has anyone had any experience with that? susanlocurto@hotmail.com


Evelyn, December 3, 2003 - Hi, A quick background. I'm 38 and in May of this year was diagnosed with IDCM. After all tests, I was found to have an EF of 17% so after a few hits and misses with meds and a referral to a CHF specialist, I'm now on Coreg 25mg twice a day, Altace 10mg once a day, and Dyazide 37.5mg once a day, plus I am already on Effexor-XR 75mg, and last but not least a multi-vitamin every day.
     My questions is: Do any of you still experience any palpitations after being on such meds? Also, does the heaviness feeling in your chest (left side) ever subside? I have lots more questions and would love to have someone to talk to about this.
     Lately, whenever I bring any little complaint up to my nurse clinician, she says, "well, there is no way that's from the CHF or the meds." However, I sure have been second guessing her and just a week ago last Friday I went to the ER with SOB and tightness in my chest. After 4 hours on a heart monitor they sent me home saying it was bronchitis back again and gave me a prescription for zithromax. Now 2 mornings in a row I've awakened with sinus congestion and when I blow my nose it comes out all blood.
     I just don't wanna be labeled as a hypochondriac. I'm sorry to mumble through all this. eveysue@hotmail.com


Louise D's December 3 reply to Peggy's November 24, 2003 - Hi Peggy, I had memory problems that were a lot worse than they are now when I was first diagnosed with CHF in December, 2002. I would forget things, little things, such as if I had just put a letter in a mailbox after walking away from it. I then would walk back to the mailbox and that would help me remember that I did put the letter in there. It's gotten better since I've started taking Accupril (quinapril at 5mg a day). I haven't had an occasion like the one I mentioned above in months. I've forgotten I've bought a product and bought it a second time, but I've only done this once. Louise. louport35@yahoo.com


Catherine L's December 3 reply to Jon's November 29, 2003 - Hi Jon, I am not on any diuretic as I never had edema. I have been taking Coenzyme Q10 for a year now and will continue to take it. So you would suggest cutting the Altace? I'm only on 2.5mg now and don't know if it comes in smaller doses. You think I should not cut the Toprol-XL (currently 50mg). My blood pressure is maybe 80 to 90 systolic. Thanks again for your thoughts on this, Catherine. gardengirl47@kc.rr.com
 
Jon's note: That systolic reading isn't very low, but you obviously have to take symptoms into account. If it were me and I thought my BP had to come up, I would drop the ACE inhibitor before the beta-blocker - in your situation.


Scott Brown, December 3, 2003 - Hi Jon and Craig, I agree with most of your sentiments. I am sure my meds have helped me a tremendous amount in the two years since I was diagnosed. Coreg can make you feel pretty lousy while you are adjusting to dose. I have unsuccessfully tried twice to make the jump from 25mg to 50mg twice daily. I just get too fatigued to get to the new plateau (European top dosage).
     Jon, I also agree that we will be on Coreg (or something similar) for the rest of our life. If we have a health plan, this is not the end of the world. I feel badly for people who would benefit from Coreg but cannot afford it. Hopefully, it is extending our life. I can't imagine making a different decision about taking it based on knowing I cannot quit it, but I suppose some people might.
     Craig, I hope you start feeling better. I have lousy days and sometimes weeks as well. If you can manage some exercise (with your doctor's approval), you might find that it makes a world of difference. I play badminton for my exercise (up to 4 times a week) and I love it. Often, I fall asleep at home for a few hours right after I play but when I wake up, I feel better overall, and I seem to have more stamina for everyday tasks. Thanks, Scott B. kitchenerguy@rogers.com


Vonda, December 3, 2003 - Hi, Do any of you have COPD along with CHF? If so, how do you know which is making you sick? The symptoms all seem the same. My mom, who is 59, has both and is sick right now. I think it is her heart but she says it is her lungs. We have a CHF specialist who is wonderful but my mom doesn't seem to think she needs to go to the doctor just yet. Any advice on how to tell the difference? jmgandme@aol.com


Jack D's December 4 reply to Tham Wai Keong's December 3, 2003 - Hello Tham, It seems that ribose is the latest and greatest craze for body builders but the real docs and researchers think it is a waste of time even though the heart benefit is real, as seen at http://sportsmedicine.about.com/cs/nutrition/a/aa030901f.htm. However, "The only research that supports a ribose supplement comes from research on patients with heart conditions who lack the ability to synthesis ribose in the first place." So don't go out and buy any especially if you are diabetic because it is a sugar. maddjak@hotmail.com


Jon's November 4 reply to Jack D's December 4, 2003 - Howdy-doo Jack, I haven't researched this heavily or anything but the tiny prospective study at www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14607200&dopt=Abstract suggests it is at least possible it might help some CHFers. Whaddya think? Jon.


Donna V, December 4, 2003 - Hi, I need input again. I got the results of my 3-month blood work-up today.The local doc is on vacation, of course. Do I contact my cardiologist? Although I've not had any blockages with all of this, my cholesterol is now 203 (non-fasting). I am not on any statin. I was encouraged to eat a lot of protein when all of this myopathy/CHF started. I feel that I should be growing scales and feathers and I eat very little red meat and no dairy anymore. I like fish. Sometimes I just must have a good, unmarinated steak. I've been eating "real eggs" and "real sour cream", both both for the first time in 20 years, and unsalted nuts as snacks. Perhaps those things are the culprits? Are there any alternatives?
     I've been so very conscious of sodium and fluid intake, and have those mgs down pat. Since the low-fat things I avoid are high in sodium, this was a surprise. I do not know whether or not to be concerned about it. Any input would be appreciated. Perhaps I'm just gloomy because it is a cold and gloomy day. What good are results without explanation? Thanks! Donna V. dmvditty@aol.com


Robert, December 4, 2003 - Hi, Can anyone please give me the name of a good CHF doctor in New York City? I have tried some and ended up in a dead end. A referral from one of you I would trust more than from a web site or advertisement. Thanks. hawkdog86@aol.com


Kevin B, December 4, 2003 - Hi, I just want to say hello to you all, and say how lucky I am to have found this site. I didn't know how alone I felt in this until I found some mutual friends. I plan to read all the bios and to post my own soon. Thanks to all of you and especially to Jon. Kevin B. kbtoledo@buckeye-express.com


Sharon L's December 4 reply to Beth's December 3, 2003 - Hi Beth, I have dry skin and dry hair. I use a good moisturizing shampoo and a good conditioner to cope. I also use Alpha-Keri in the bath, and lots of Cetaphil on my skin. Somewhere in The Manual Jon talks about dry skin.
     Evelyn, I have been on Coreg only since January 2003 and while for the most part it is good, I still get PVCs while resting sometimes, on hot days and on cold days, but not while on the treadmill or exercising. I'm not sure they ever go away. Don't give up hope. lyons@sasktel.net


Darric, December 4, 2003 - Hi, Well hello all, I hope that all went well for you Jon. I had a terrible week. I drive a cab on the weekends to make ends meet. Well, my first fair out, I was t-boned by a car doing probably 35 miles per hour. There was nothing I could do but get hit and pray. My kids were also in the car with me because I was taking them to their aunt's for a get-together. I thought I was a goner, with my worst fear being of all my kids seeing their father die right in front of them.
     I made sure they were okay, and got them off to the ER. I then went to the cab company to fill out the paperwork. I began to have really bad chest pains, so I went to the ER. I had to wait over an hour for them to get me back to see a doctor. I have never had to wait that long before. It blew me away. Is this normal procedure?
     This wasn't my usual hospital. The ER doctor gave me my EKG printout to carry in my wallet - is this normal? After all that, I caught the flu and missed my first clinical study appointment. I hope they understand. I'm sorry for all the babble but I needed to vent. Keep your chin up, all, we can beat this. Darric. dwbenson2002@msn.com


Catherine L, December 4, 2003 - Hi, In case some of you missed it, 60 Minutes II had a segment on a newly discovered heart attack gene that could help find cures for heart disease. See the story at www.cbsnews.com/stories/2003/12/02/60II/main586436.shtml. Great discoveries could come from this, so take heart, everyone!
     Jon, my doctor wants me to stay on all my meds, just take them at night from now on. It makes me mad that the nurse suggested halving my Toprol-XL without consulting my doctor. Catherine. gardengirl47@kc.rr.com


Jack D's December 5 reply to Jon's December 4, 2003 - Hi Jon, The small study indicates it might be helpful but it was a small study. A more important thing is making sure that it is labeled as a sugar so diabetic heart patients don't go gobbling it up. maddjak@hotmail.com


Peggy, December 5, 2003 - Hi everyone, Yesterday I guess I had my first CHF episode. We had a fire drill at work and I had to walk down 6 or 7 flights of stairs. I felt exhausted after that and my legs felt like rubber. About an hour later at lunch I started having chest pain that would not go away (a heart cath in October showed no blockages) and then I had rapid and heavy breathing with extreme weakness in my arms and legs. This scared my co-workers pretty badly, not to mention myself. They tried to get someone from my CHF doc's office on the phone but they were cut off 4 times. I didn't want to call 911 if they could have explained to me what I was experiencing.
     Since we couldn't get anyone on the phone, the paramedics were called and guess where I wound up - The Chest Pain Center at the hospital. My blood pressure was never any higher than 130/60 but my pulse and respiration were high. Blood work, chest x-ray and EKG results were beautiful according to the cardiologist in the hospital. Even whatever they look for in heart failure was good.
     I was sent home and told to take over the counter Pepcid or Tagamet. This was no heartburn! I have been feeling and looking a little "peaked" (very pale) for 2 weeks now, and still do. Needless to say, I stayed home from work today. I have yet to call my CHF doc to push up my appointment from 12/23.
     Oh, by the way, the good news is that I was out of the Chest Pain Center in 2 hours or so! That was a shock! Have a great day all. Jon, I hope you feel better and that your MRI gives good news. I know about knee problems! pferro1@bellsouth.net
 
Jon's note: Thanks but it showed arthritis in both knees. So it goes.


Anne, December 5, 2003 - Hi, Can anyone suggest a good CHF specialist that they are using in the Florida area, particularly the central Florida area? Happy holidays to all and thank you Jon, for providing help to so many! HeartnHealing@aol.com


Pat W R's December 5 reply to Donna V's December 4, 2003 - Hi Donna, I e-mailed you before I read your post, so this is in reply to that. I use a lot of alternative therapies, a lot of natural remedies. I do a lot of research and I always check with my cardiologist before adding anything. I use only olive oil and unsalted butter. I've been doing this for years before CHF. The olive oil is great for raising HDL and HDL helps lowers LDL. I've been using garlic heavily for years and have been told I have textbook perfect lipids. Fresh garlic is excellent and powder works as well. I do fry, marinade, and sautee, but only in olive oil or butter. It gets expensive, but is well worth it. When you buy the large tins, it's very economic. Also, when you read your labels, check for the saturated fat, as it is easily converted into LDL. Keep your head up girl, don't let this get you down.
     While I'm here I want to let everyone know how my visit with my cardiologist went. He agreed to take me off Coumadin (yippee) since it was only for precaution. I think he was taken aback by my outspokeness. He agreed that taking charge is very healthy. I didn't have an echo this visit, but my heart sounds good and my lungs sound great. I have no pitting in the ankles. He agreed that I take taurine and L-Carnitine.
     I'm still on the lookout for a specialist, as this state has no heart transplant program and the number of specialists is very low. I'm just as close to Texas so I'll concentrate my search over there. Overall it was a great visit and I feel really good. Thanks for giving me the courage to take charge of my health. I really appreciate you guys. Have a blessed day, Pat. rollnright@cableone.net


Paul D, December 5, 2003 - Hi, Has anyone here been diagnosed with a skin condition called "lichen planus?" Though it's thought to be an auto-immune condition, apparently beta-blockers can cause this reaction in some people. I've developed a sore lesion in my mouth that has been diagnosed as oral lichen planus, and I'm wondering if my Coreg might be involved. Though I've been taking the same meds for more than a year, I suppose I may have only recently developed a sensitivity. Have people noticed changes in their sensitivity to Coreg over time?
     Obviously, I'll be talking with my cardiologist before monkeying with anything, but since I'm expecting that I'll have to be the one educating and communicating between the oral medicine doc, my cardiologist, and my PCP, I'm looking for all the info I can get. Thanks! therealpauld@netscape.net


Paul D, December 5, 2003 - Hi, Folks might want to be on the lookout for some lower sodium products at Safeway stores. My local Safeway supermarket here in Seattle has started carrying a No Salt Added Swiss cheese, which has only 10mg of sodium per oz! It's Lucerne, which is a Safeway store brand. Since Safeway is a big chain, you may be able to find it near you. It doesn't taste as nice as real Emmenthaler from Switzerland, but that has 50mg per oz. The Safeway stuff works well in cooking, and is easier to find.
     I think Safeway may be reaching out to low-sodium folks. They also have a 40% Less Sodium Bacon, which is 168mg per slices, meaning I can adjust my diet to include it as a splurge once in awhile. Yum! When I've served it to "normal" folks, they actually liked that it isn't so salty. It's got a nice maple cured flavor. I've also seen No Salt Added Tomato Sauce, though Hunt's has fewer mgs. therealpauld@netscape.net


Pat Hicks, December 5, 2003 - Hi, In 1991 I was hospitalized for CHF. I'd never had any problem before. My EF was 18%. At that time the cardiologist also found that I had a congenital problem with my aortic valve. He did lots of tests, including biopsies but was not able to find the source of my CHF. I was treated medically after that until 1999, when my cardiologist died of a heart attack.
     I got another cardiologist right away who did all those tests and said that my problem was the heart valve but it was doing okay. He took my off almost all my meds. One year later, my heart had enlarged. I had more tests, with the result that I needed aortic valve replacement. Both my cardiologist and the well known surgeon before and after the surgery said I would never have to take medicine other than Coumadin ever again.
     Within 3 months of the surgery, I was back to the ER with CHF. I was put back on almost all my meds with the cardiologist saying something like, "Mmm, we usually catch the problem of the valve in time to not do any damage to the heart." Later he took me off some of the meds because I was doing better.
     The last echo showed my EF at 35% and I was placed on another of the old medications. I now believe that my first cardiologist was correct - I had two separate problems. I really don't know where I'll go from here. I'm due for another echo in April of 2004, and hope my EF is up. I walk vigoriously on a treadmill 3 times a week. Any ideas? phicks@mpvlaw.com


Mike, December 5, 2003 - Hey all, I have been here in the past but been gone for awhile. I wanted to get input from people on this board regarding my situation. I am 31 years old and was diagnosed with heart failure in 2001. Cardiologists believe it was due to a viral infection just because they think they have ruled out everything else. Anyway, I was fine before my diagnosis and continue to be fine, cruising along on Coreg and Zestril.
     I have been an active exerciser (weight lifting, spinning, etc.) for about 7 years now and I recently hired a personal trainer to help move me to a higher level with regard to my own personal fitness. I needed to have my cardiologist sign off on a medical release form prior to getting very involved in this program.
     Today, she called me and said she thinks this is great that I am doing this; however, she would prefer if I do not use free weights in my training due to excess pressure on the heart and increases in blood pressure. I have been using free weights all along for years and my heart function has been normal since starting meds.
     I did agree to another stress echo in the coming weeks at her request, but I am wondering if I should be more forceful regarding what I feel regarding my own fitness regimen. I have read various studies and they seem to say that resistance training is beneficial for heart failure patients. Anybody out there with some experience with this? Thanks, Mike. mgabay@uic.edu


Jon's December 5 reply to Mike's December 5, 2003 - Hi Mike, My CHF specialist says he does not usually recommend free weights. However, it's because he says too many people don't know how to do it correctly. He knows that I do, and he recommended for me a program that was actually more aggressive than I could handle!
     With his blessing, I use free weights and other resistance training 7 days a week and walk on a motorized treadmill 5 days a week. If you can handle resistance training and know what you're doing, I can't imagine why free weights wouldn't be the ideal way to go.
     Maybe she is unfamiliar with weight training specifics - it's not unusual with doctors. The literature does support resistance training for CHFers. See www.chfpatients.com/faq/exercise.htm. Jon.


Carrie, December 5, 2003 - Hi everyone, I have read through this web page off and on for awhile and enjoy reading all the similar situations. I am currently 32 and was diagnosed with DCM 18 months back. My EF was at 10% and over the past 5 months it's back up to 40%, although it drops significantly at exercise or daily routines like vacuuming. I was recently diagnosed with a severe respiratory interaction with my heart and lungs, and now have terrible asthma.
     I have 3 children, ages 7, 11, and 18 months. It is difficult for me. I am fighting for my long-term disability benefits from a group plan. I have a wonderful partner, although he doesn't fully understand what really goes on in my mind: The depression, fatigue, chest pains, and feelings of inadequacy I have.
     I also suffered from ARDS in May of 2001. These last 3 years have been so difficult. However, my EF has improved and I am feeling a little better then a year ago. I do tire soooo easily - just taking care of the 3 kids is all I can do. I wish I could be and do more for him.
     Thanks for all your honesty everyone. I know my life is far from over but I am still trying to reshape it with my disability. If anyone has any advice for me or my lawyer regarding my insurance appeal, that would be helpful. I did win my SSD last year and it paid back 2 years, which was great and very much needed. Thanks again. carrieann5000@yahoo.com


Ruthie A's December 8 reply to Pat Hicks' December 5, 2003 - Hi Pat, Do you see a CHF specialist or a regular cardiologist? You really need to have a CHF specialist on your team to handle all your heart failure stuff. This on-again, off-again routine with your meds can't be easy on your heart, not to mention your morale. I bet you will feel a whole lot better once your CHF doc gets you on the right medication routine. Ruthie A. rlaba51@yahoo.com


Jack D's December 8 reply to Paul D's December 5, 2003 - Hello Paul, I always use the Safeway brand tomato paste. It contains 200mg sodium for the entire can and it needs 2 cans of water added to make it tomato sauce! maddjak@hotmail.com


Joe S, December 8, 2003 - Hi all, Well now it has been over 6-1/2 years since first being diagnosed with CHF, and lo and behold I am still alive. Tuesday I turn 65 and am still in fairly good health. Of course, it took a new aorta valve to do it. One advice to all is don't listen to any dates regarding when you will die. I've been given several, from 3 months to a max of 5 years.
     Also, we are not carnivores, we still need carbs to function. I eat carbs before bed and sleep like a log. Also, never let docs treat you as just another dumb patient that doesn't know what's wrong. You know your body better then anyone. In other words, don't let them tell you what to take like a guinea pig. Finally, and really number one, listen to Jon, I claim most of his advice saved my life. Joe S. jes@gbis.com


LaRae's December 8 reply to Jon's December 3, 2003 - Hi, I am curious Jon, why you think it is strange to start taking Aldactone before starting Coreg. I have had success with Aldactone. However, my doctor put me on Aldactone for about 6 months before trying to get me to take Coreg. Unfortunately, I was unable to tolerate the side effects of Coreg and I, to my regret, had to stop taking it.
     I have beein feeling really lousy lately though and wish I could take a replacement for Coreg to see if I could become stronger. Should I bring this up to the doctor or not? I had to ask him if I was a candidate for Coreg before he decided to give it to me. I will mention it to him next appointment time because my quality of life is getting worse. Could you tell me why you were curious about the Aldactone-before-the-Coreg question? LaRaePT@msn.com


Jon's December 8 reply to LaRae's December 8, 2003 - Hi LaRae, Because Coreg reduces mortality and symptoms more than spironolactone in most CHFers. It also helps reverse heart remodeling and increases EF more than Aldactone (spironolactone).
     You might try Toprol-XL. Coreg is both an alpha- and a beta-blocker, but Toprol-XL is only a beta-blocker, so it doesn't affect blood pressure as much, etc. Jon.


Tracey, December 8, 2003 - Hi, Two years ago I was diaganosed with mitral valve stenosis. I have echos every year. This past July my echo indicated that my valve had gotten much worse, so my cardiologist ordered a heart cath. He hinted that the valve would probably have to be replaced. I am a 40 year old female and was not prepared for such news at my age. Thankfully my valve was not as bad as he had thought, but my heart had weakened and was enlarged.
     My EF has always been around 50% but the heart cath indicated it was 40. My doctor had no explanation for the drop. He then explained that he was going to be treating me for congestive heart failure and added Aldactone (spironolactone) to my meds. I also take Diovan HCT. I had another echo in October and my EF was 50% again, and my heart was borderline enlarged - it had gotten smaller.
     My question is, can the heart muscle recover that quickly and also once you are diagnosed with congestive heart failure, are you always considered being treated for heart failure? I am still taking both the meds. I just want to know if this is something I have to worry about coming back or am I cured?
          Thank you so much. Your message board has been such a comfort for me. My cardiologist is not much of a talker and I had to get a lot of info from places like this! Thank you again. thicks@vistatech.net


Jon's December 8 reply to Tracey's December 8, 2003 - Hi Tracey, For starters, cath is far more accurate than echo for measuring EF. Since echo has a roughly +/-8% margin of error, it could be that your EF hardly changed at all. The Manual covers a lot of your other concerns, as do the treatment guidelines and this answer (let it load) from Dr. Marc Silver to a similar question. Jon.


Robert, December 8, 2003 - Hi, I personally have heart disease and have spent years researching the research community which is so often light years ahead of the practicing office. My mother-in-law had been diagnosed a little over 3 years ago and lives with congestive heart failure. What I want to share with you concerns her condition.
     I have read everything I could get my hands on for both her benefit and of course for my own situation. I finally found one book of the dozen or so that I read that had the most complete information. Because some of the suggestions discussed in the book for helping CHF patients were being used successfully in other parts of the world plus the fact that my mother-in-law was getting progressively worse, we agreed to try the suggestions.
     We were all very discouraged when we learned how limited the amount of help was available medically. I can honestly tell you her condition has shown significant progressive specific improvement and the natural stuff she has been taking is in conjunction with her traditional medicine. Three years ago her voice projection was labored and she constantly sounded exhausted, she was taking Lasix daily, her fatigue was marked and her lungs and ankles were holding water. The first improvement her daughter and I noticed after several months was that (on the telephone) her voice sounded strengthened and clear, so we believe her heart's pumping was enhanced. I can honestly say she now sounds like she did 5 years ago before the diagnosis. She was taking Lasix daily and now only when the fluid buildup becomes obvious, once or twice a week. Her overall stamina and general well being is vastly improved. She is 85. There is some hope out there. betterhealthnow2003@yahoo.com


Jon's December 8 reply to Robert's December 8, 2003 - Hi Robert, Limited medical help? Wow, that's an odd comment unless there are reasons she cannot take ACE inhibitors, beta-blockers, spironolactone, ARBs, or other CHF meds like Inspra. I am all for useful alternative therapies. However, I hope that anyone considering them will research possible dangers as well as possible benefits before using them.
     For everyone, more mailings coming soon. Jon.


Jack D's December 9 reply to Jon's December 8, 2003 - Hi, It's kind of hard to research the dangers of alternative therapies when the purveyors of such therapies preach that there is no danger because they are "natural;" and of course there are really no verifiable trials for most of the "magic weed powders", "heavenly tree sap" and pulverized insect carapaces. You're more likely to develop allergic reactions than you are to get any benefit and also likely to have adverse interactions with the real medications you are taking. maddjak@hotmail.com


Pam, December 9, 2003 - Hi, I just saw my cardiologist yesterday for the first time after my cardiac cath. He seems like a good guy, and is referring me to a CHF specialist who is doing clinical trials of new medications.
     My older parents (I'm divorced, so I don't have a husband to go along) have had a lot of trouble understanding why I'm being told not to do a lot of strenuous activity, that I should not be working outside the home, the risk of sudden death, etc,..., when I "don't look sick." So they came along to have their questions answered. The doctor was very patient with all of us and even sat and drew diagrams of exercise tolerance versus EF, and mortality versus EF, etc. I guess probably quite a few of you wish you had no symptoms, but this is the down side of that scenario! Even your family members have to be convinced that there really could be something wrong. I think they felt like I was exaggerating or being a hypochondriac, or trying to find a way to get out of work, or something. It just didn't add up, to them. Sigh.
     The doctor classifies me as "class zero" because he thinks I'm entirely asymptomatic. So technically, I don't have heart failure yet because CHF is symptoms, which I don't have at this time. My cardiomyopathy however, corresponds to an end-stage or D rating because of the size of my heart. The echocardiogram showed it to be 6.7, but I don't have an idea of what that means, really. Does anyone care to venture a guess? I know they said my heart showed up on an abdominal CAT scan, so it's in places I guess it usually does not go. <g>
     This doctor thinks I'm very knowledgeable. After we had spoken for awhile last time, he asked what I did for a living. I told him and asked why. He said, "Because you are asking all the right questions. You could be a cardiologist!" That made me laugh, and I'm sure your site deserves the credit, Jon.
     My ejection fraction is 25%, according to the cardiac cath. That's 5% up from the estimate given on the echocardiogram. The doctor attributes this to the difference in accuracy between the two tests, not to any improvement in my EF. There is no blockage in my arteries, including my renal arteries, which would cause hypertension, so there was nothing to correct surgically, unfortunately.
     The only explanation the doctor can give for my lack of symptoms is that the cardiomyopathy must have come on very slowly, allowing my heart time to compensate. I don't think this makes sense, though. I'll bet it's not uncommon for cardiomyopathy to develop slowly, and yet it seems people still get symptoms from it. Am I wrong? Anyone care to comment?
     I think the really unusual factor in my case that might explain why I have no symptoms is that they caught my cardiomegaly before I developed symptoms. If left long enough, I'll bet I would have had symptoms just like everybody else. The doctor did indicate I might get 'em yet.
     The new medication he put me on is Clonidine. I'm now on 320mg Diovan, 100mg Aldactone, 30mg Imdur, and Clonidine 0.1mg. He was interested in my positive reaction to Aldactone, which got rid of my fever of 3 years, brought my blood pressure into a normal range, and normalized my potassium, which has been historically low. At one point it was 2.5 and that was before I started diuretics. He agreed this might indicate a history of little too much aldosterone, suggesting a primary cause of hypertension, and deferred to my kidney specialist to answer my questions about that. Thanks for listening! Hugs, Pam. spirlhelix@yahoo.com


Jon's December 9 reply to Pam's December 9, 2003 - Hi Pam, I would say you are Stage B. End-stage CHF has little to do with heart size as such - it means that symptoms cannot be relieved by treatments or that you are at high risk for death in the short term. or both. My own heart is 6+ cm but I am class 2 and stage C; I am stable and fairly well-compensated. In fact, although my EF is now normal, my heart is larger than it has been since my original diagnosis. Neither I nor my CHF specialist quite know what to make of this but we are "keeping an eye" on it. <g>
     Stage D means "patient with end-stage disease who is frequently hospitalized for CHF or who requires special treatments such as LVAD, artificial heart, inotropic infusions, heart transplant or hospice care." You are neither end-stage nor stage D as far as I can tell. Is your doctor actually using those terms? If so, ask him for specifics as to why he is doing so.
     Why do you take clonodine but not a beta-blocker? Why is your Aldactone dose so high? Just curious. Jon.


Tham Wai Keong's December 9 reply to Jack D's December 4, 2003 - Hi, As a life extensionist who is quick to latch onto the possible benefits of innovative supplements and drugs, I think if one were to listen to the "real docs" and their talk of "unproven benefits" and cautions for us to wait for FDA approval and other "proven research" for which we may live long enough to wait for, I think the risk-benefit odds are good enough for a disease (CHF) that mainstream medicine gives a 5-year survival rate of 50% at best.
     I believe the benefits of ribose demonstrated to date are versatile and exciting enough to try in stemming what is realistically a fatal disease. I've always believed that the principles of life extension are correct: To improve not only the quantity of life, but its quality too. Possibly one could look at www.bioenergy.com.
     Going deeper into ameliorating not only the symptoms but the possible causes of CHF too, possibly the following should be taken by every patient, largely due to their benefits in inhibiting the production/blocking the effects of IL-1, IL-6 and TNF-alpha with their role in the apoptosis of heart myocytes:pentoxifylline, nettle leaf extract (though there's little info on the Net on the doses required of this herb to effectively block TNF-alpha), fish oil, GLA, and garlic. Thalidomide also blocks TNF-alpha, but of course this drug is out of the question. tham@mail15.com


Jon's December 9 reply to Tham Wai Keong's December 9, 2003 - Hi, In my opinon, you have some basic facts wrong. First, the 50% survival at 5 years statistic is no longer valid. This has been officially stated in mainstream medical circles this year. Read this post to see how I beat the scientists and doctors to realizing it: Jon's 8-2 reply to Don C's 8-2-2001.
     TNF-alpha reduction does not help heart failure. Although in the lab it looked very promising, that idea died very dead in actual trials, which reached phase 3 with Enbrel (etanercept). That was disproven long enough ago that I have removed all but that one article about it from my web site.
     While reducing inflammation is still a valid and always tested theory in CHF (witness the ongoing "immune modulation therapy" by Vasogen), trying to target specific components of the immune system like tumor necrosis factors has not proved of any benefit in real live people - only in the lab. This happens to many "promising" treatments, which is why I try to keep up to date in my reading of research: A benefit seen in the lab today may be proven a dud tomorrow in real people. Why? People are a lot more complicated than their component parts. <g>
     Pentoxifylline is basically a blood "thinner" so suggesting that CHFers take it is risky. Many already take daily aspirin or Coumadin, so they must be very careful about adding such a drug to their regimen. It can also cause arrhythmia in some patients, making it riskier yet.
     Stinging nettle, specifically the perennial herb Urtica dioica, can have a diuretic effect and may help some people with certain sinus problems. I have seen nothing to convince me it has any other properties beneficial to a person with heart failure.
     Gamma-linolenic acid or GLA is used for for diabetic neuropathy and for migraine headache relief. CLA or conjugated linolenic acid - not the same thing - is used for weight loss. I have seen nothing that convinces me it has any specific benefit for CHF. I am sure "life extension" organizations like lef.org say differently, but I have been through a lot of their info in the past and walked away unimpressed.
     For all these reasons and more that I don't want to have to sit here and type all night, I would say that you don't know enough about heart failure to be making the conclusions you state. I strongly urge everyone here to note the warnings I have stated in this post and not to go out and start taking any of the supplements in Tham Wai Keong's post without doing thorough research on both heart failure and the substances mentioned!
     Personally, I believe some supplements can indeed help CHFers. However, the lack of standardization and regulation make taking them a hit or miss proposition at best. Other supplements can indeed cause harm, for various reasons. Herbs can be quite potent, but this is a problem as often as a help. Check out Nutrient Stew for more. Jon.


Lavon, December 11, 2003 - Hi, Does anyone know where I can find help with my medicines? I have had CHF for about 13 years and I am on a lot of medicine. We do have insurance but our co-pays are so high and when you have to buy 7 types of pills at one time and for only a month, it's hard. So if anyone can help me, that would be great! Lavon. jrsky2@nethtc.net


Pam's December 11 reply to Jon's December 9, 2003 - Hi Jon, I'm not on beta-blockers because they make me want to throw myself in front of a train within about an hour of taking them. I've tried several kinds. They all make me suicidal. So I refuse to take them, and my pharmacy refuses to fill a prescription for them for me. In addition, I've never had a doctor prescribe an ACE inhibitor for me since they found out they give me a cough. A cough - that makes me laugh. Compared to being obssessed with suicide, it's nothing. I sneeze at coughs. <g>
     The clonodine was added because my blood pressure was 189/98 with a heart rate of 109 in the doctor's office yesterday. I think he wants to make sure it's lower all the time, not just at home, where it's perfectly normal right now. I'm not sure it's going to work for me, though. He told me to take it at supper time, and I collapsed right after dinner and did not reach a conscious state again until around midnight. That makes for a long, strange night. I woke up itching all over. I don't think this one is going to work for me, really. I'll let the cardiologist know right away, cause I hear getting off clonidine has some bad blood pressure rebound effects.
     So I don't tolerate the standard treatments for CHF. I asked the doctor flat out if the intolerance of standard treatments was why he considered me end-stage, and he denied it. He came back with a response about the stage being based on the condition of my heart, and he described cardiomegaly. He may have been simplifying a bit for the sake of my parents, who might not get all the technical stuff very readily; I don't know. However, if he thought I was anything other than end-stage, that was his chance to clear it up and he didn't. Now I'm puzzled and I will ask the CHF doctor for her thoughts.
     The CHF doctor has 100% CHF patients and does clinical trials. She works at a transplant center. I asked the cardiologist about a prognosis, but he said he was not ready to offer one until my blood pressure was under better control and my heart has had a chance to recover a bit. With a little pressure, he did tell me that he did not expect me to die in the next six months. Me, I'm wondering how to take that - could be good or bad. <g> Jon, what factors put a patient at risk of sudden death in the short term? The cardiologist told me, but I forgot.
     Why am I taking so much Aldactone? It's the only thing that has ever affected my blood pressure. Around the fifth week of taking it, my blood pressure levelled out in the normal range. I've never had a medication do that before! So when it crept back up, I asked my doctor if we could increase the dose and he went along with me. It's back to a normal range (average 116/78) at this dose. Aldactone has also gotten rid of my fever of 3 years and has normalized my potassium level, which has been low since before I started diuretics.
     This is turning into a book. Maybe you can help shed some light on these mysteries. Hugs, Pam. spirlhelix@yahoo.com


Jon's December 11 reply to Pam's December 11, 2003 - Hi Pam, It's usually kind of futile to over-analyze an individual's health situation long-distance. <g> I'd ask about trying Inspra (eplerenone) - really. I'd also ask about isosorbide dinitrate and hydralazine for your blood pressure when going off clonidine. Risk factors for sudden death are various, many, and not always reliable. There are so many ifs and buts involved that I hesitate to go into them. Cardiomegaly is heart enlargement and most of us suffer that to some extent so it would not seem to merit an "end-stage" label of itself. Jon.


George G's December 11 reply to Lane C's December 3, 2003 - Hi, Thanks for the response. I have decided to not drink at all but I am interested to know more about the poisonous effects of alcohol to the heart. What actually occurs and is it reversible? Do heart muscle cells die from alcohol? If so, they can't be replaced, right? Does anyone out there have any info?
     I just started Coreg and man, it's tough going. I feel like I've got a yoke on my shoulders with about forty pounds of weight to lug around. Also, it seems like I get diarrhea some. It could be worse, I suppose. At least the pump hasn't shut down yet! Jetmaster727@aol.com


Jon's December 11 reply to George G's December 11, 2003 - Hi George, Diarrhea is not uncommon with Coreg. Sometimes it goes away and sometimes it doesn't. If it's bad and stays that way, you'll need to talk to your CHF doctor about it since it can dehydrate you and throw your electrolytes out of whack.
     I haven't heavily researched booze and the heart, but I know that even "moderate" amounts of alcohol decrease heart function. See chfpatients.com/CHF.htm#etiology. Jon.


Jan S, December 11, 2003 - Hi, It's been awhile since I've visited this site. I've been doing very well. I started visiting this site in 1999 after my pacemaker implant and AV node ablation. I'm now 99.7% paced and on monthly battery checks for my pacer change. Yesterday I had an echo done and my EF was 78%. I initiailly thought that was great but after doing some Internet research, I find that EF over 75% is not great - it's new problems. My cardiomyopathy was brought on by the radiation and chemo I had in the late 1970s. What I'm finding is restrictive cardiomyopathy and hypertrophic cardiomyopathy. Can anybody out there help me understand this new change? Jan S.
     PS. I still thank the good Lord for each new day, and I'm thankful for this web site. geschuppja@aol.com


Craig B, December 11, 2003 - Hi, Arapax, depression and panic attacks. What are others' stories? I have recently added a new fun game to my CHF life: Panic, depression and anxiety. Does anyone have any comments on good meds or other fixes for these awful things? Craig B. bayce@optusnet.com.au


Jon's December 11 reply to Craig B's December 11, 2003 - Hi Craig, If it were me, the first thing I would do is to check that it isn't caused by my meds. Beta-blockers can cause serious depression. Talk to your CHF doc about replacing your beta-blocker with another med to see if your depression clears up. Jon.


Lynn, December 12, 2003 - Hi, My name is Lynn. My brother Michael is on the heart transplant list. He has been on the list for almost 3 years. I have so many questions and no one can answer. Bethanyhousenews@yahoo.com


Maggie's December 12 reply to George G's December 11, 2003 - Hi, I did find something to counteract Coreg making me tired. When I complained to my doc, he cut back my Coreg dose. I felt better, but was SOB more often. I went to a General Nutrition Center to get more L-carnitine and picked up some taurine, that I had seen talked about here. I think they will make that stuff illegal! I had so much energy from taking that stuff that I went back to my original level of Coreg.
     I feel so great now that I tend to overdo my activities and it takes me a couple of days to recover. When I run out of CoQ10, I tend to be depressed. However, the combination of CoQ10 and taurine has made me feel like a real human being again. I'm so happy and cheerful that it is disgusting. Thanks Jon, for sharing so much. Maggie. madmaggie@mindless.com


Pam's December 12 reply to Jon's December 11, 2003 - Hi Jon, Why do you suggest eplerenone? I know it's supposed to have fewer side effects, but I got the impression its range of action may be more limited. I'm getting relief for my fever, potassium balance, lowered blood pressure and heart rate, and the side effects of Aldactone don't bother me all that much. I'd be interested to know why you think eplerenone would be better.
     I'm already taking isosorbide dinitrate (Imdur). They initially combined it with hydralazine but that gave me symptoms of hepatitis. I felt like I'd been run over by a truck (muscle and joint pain) and had headache, fever, and dark urine. So that's now on my ever-lengthening list of drug allergies, and I don't take it any more.
     They are considering me as a candidate for clinical trials of new medications, but I don't know with all of my drug sensitivities if it is a good idea. I have a history of kidney and liver problems. I could probably throw their trial statistics off single-handedly! <g> Take care, Jon. Hugs, Pam. spirlhelix@yahoo.com
 
Jon's note: See http://www.chfpatients.com/text/aldosterone_antagonists_2001.txt. I didn't say replace Aldactone - I suggested adding eplerenone.


Pat W R's December 12 reply to LaVon's December 11, 2003 - Hi LaVon, I just read your post regarding the high cost of meds. I agree that they are outrageous. My mom, who lives with me, had the same problem. We were informed that through the prescribing doc that you can apply for patient assistance from the pharmaceutical companies. It may take 6 to 8 weeks, but she now gets free meds that are sent directly to her doctor and they call her when it's time for a refill, which is usually monthly. Check with your doctor. Ask him about the patient assistance programs for your meds. If he has no clue, we applied for one med on the Internet. Good luck. Pat. rollnright@cableone.net


Pat W R's December 12 reply to Craig's December 11, 2003 - Hi Craig, I am so sorry that you are going through what I call "the crud." I experienced that for several months. I tried it all, short of asking for anti-depressant drugs. The thing that really, truly worked for me is facing this disease - head on.
     If you are able to type on your computer, it isn't as bad as it could be. Find the positives in your life and hang on to them, dwell on them. I don't know if my meds caused my depression (I think not because I still take the same ones), but I do know that acceptance of my illness and being grateful for the function I still have changed my outlook.
     Top all that off with some heavy duty praying and I've come out of the funk. I know that depression and anxiety is a vicious cycle. Thanks to you guys on the web site, I now have a place to vent. Craig, I don't know you or your situation but I wish you the best. Take care, Pat. rollnright@cableone.net


Laurie, December 12, 2003 - Hi, I have only posted to this board one other time, but I read your posts faithfully. I am newly diagnosed with DCM in November of 2003. I have had the regular routine tests to confirm this. I had a echocardiogram that confirmed what the nuclear stress test told us. I had a cardiac catheterization Tuesday of this week. Boy was that a treat! I survived it and I am feeling much better.
     I was put on Coreg 3.125mg twice a day when I came home from having the test. So far so good with Coreg. I am expecting that when I go to see the heart failure specialist in a week or two that she will put me on other meds and I was wondering if any of you could give me an idea what to expect.
     I am very sensitive to medications to begin with, so I am expecting a rocky road to get the right balance. I was also given a prescription for Wellbutrin to help me quit smoking. I am waiting a few days to start the Wellbutrin so as not to confuse any side effects with the Coreg, per my doc. I have already cut my smokes in half, but it is really hard. Any suggestions?
          I just want to thank all you wonderful people who post on this board and give all us newcomers to DCM the opportunity to realize that we are not alone and we can get through this. Before I found this site, I didn't have much hope for anything and you all have changed that. Thanks again, Laurie. lrp3lmp@aol.com


Jim, December 12, 2003 - Hi, I want to thank everyone on this board for their help and information over the past several months. My father had CHF and was transplanted 10/02/03. However, after numerous rounds of sepsis plus multiple other complications, he passed away Saturday, December 6th.
     Please continue to learn more about this disease and pray for better treatments and more options for those suffering from CHF. I am still in complete support of transplants. It gave my family 3 extra months to share with my dad. He as a good man, who fought hard. Jim. jiminmanjr@yahoo.com


Kat R's December 12 reply to George G's December 11, 2003 - Hi, My former husband died from CHF earlier than he should have, as far as I am concerned. He was an alcholic and continued to drink. After the divorce it got worse for awhile and I think it hastened his death. Doctors warned him against drinking even moderately, but he knew best and continued. I think that if he had stopped sooner than he did and took better care and control of his CHF, he might still be alive to enjoy his grandchildren. Kat. krohrer@jacobsmarketing.com


Donna V, December 14, 2003 - Hello folks, I think it was sometime last month that I wrote about the ever popular Coreg. I'd been increasing my dosage from 25 to 50mg a day and aiming to hit the full dose, but it had me really dragging. I still cannot believe blood pressure can go so low and a person can still move. I am still obsessively charting that and my heart rate for my next visit to the cardiologist.
     Something good has happened. I am still very slow in the mornings and wonder just how long I would sleep if I did not have to get up and take my meds. By afternoon I feel human again and motivated to do more. I really think that if I had doubled the dose all at one time instead of slowly, I would have quit right away. I've stuck it out and for several days I've felt so much better, especially if I keep moving. My legs, especially behind my knees and in the upper calf, are still a nuisance but perhaps that keeps me from getting up too fast and keeling over? Thanks to everyone for sharing. Donna V. dmvditty@aol.com


Tom S' December 14 reply to Laurie's December 12, 2003 - Hi, If suffering a premature death isn't good enough incentive to quit smoking, then I wouldn't want to hazard a guess what would be a motivator. I was a 5-pack a day man at one time (the ash tray smoked more than I did) so I know what an insidious habit it can become. When it came to stopping, I did it cold turkey 7 years ago and have done my best to stay upwind of smokers. My wife is even banished to the outdoors when she smokes, and she is a pet project among my children, who nag the heck out of her about it.
     I personally bought bags of Halls eucalyptus cough drops and popped one of those in my mouth when I had the urge for a smoke. That worked so well that the last bag of Halls I bought for that purpose was over 6 years ago. Good luck. It's just a matter of desire and if you desire to quit, you will. bigheart@muchomail.com


Sheryl C's December 14 reply to Laurie's December 12, 2003 - Hi Laurie, Try this: Duct tape a water pistal to the pack of cigs. Whenever you reach for one, hold the fake gun to your head and say, "Bang, you're dead!" Killing yourself is what you are doing, so create a more accurate mental picture.
     To quit smoking, be real with yourself. Look around you and find your reasons for living and think of them every time you crave a cig. Throw the cigs away now. With each craving, say to yourself, "I am not a smoker. I am a person who wants to live."
     After 4 years of not smoking, I want to tell you - all you smokers - that you stink. Used smoke smells really bad and everyone can smell it. Once you are off them, you will be horrified that you used to walk around smelling like that. Good luck in quitting. Sheryl C. cvprehab@hotmail.com


Peggy's December 14 reply to Craig B's December 11, 2003 - Hi Craig, I am so sorry to hear you're having difficulty with your condition. My non-medical suggestion to you: Start reading! I started this when I was diagnosed with breast cancer back in 1995 and I couldn't get to sleep for my imagination. All I could think about was dying, picturing myself in my coffin, being eulogized, etc. Enough was enough!
     Books became my sleeping pill. Your brain cannot think and imagine, and also concentrate on reading at the same time. Pick a subject you like (just like movie genres) and go to the library. I am still reading today. I can't get to sleep without a book now. Unlike movies or TV, you don't have to wait for a commercial to visit the bathroom.
     Another great way to relieve anxiety is to talk, talk, talk. Sharing your feelings and condition, with anyone who will listen, is great therapy. Believe it or not, many people are curious but too polite to ask. Don't be afraid to volunteer information. Just try not to "overload" it. You will be surprised at the support people are willing to give. Take care! pferro1@bellsouth.net


Blanche's December 14 reply to Jim's December 12, 2003 - Hi, I am so very sorry to learn of your dad's passing. bna104@msn.com


Joanne R's December 14 reply to Jim's December 12, 2003 - Hi Jim, I'm sorry to hear about your father's death. My dad died over 35 years ago and I still think it is the most difficult and painful loss I ever experienced. It sounds like they were both men who set us a good example. We can be grateful that we had them. Be well, Joanne. muddyrds@hotmail.com


Lane C's December 14 reply to Jim's December 12, 2003 - Hi Jim, I am so sorry to hear about your dad. While I can believe you know he may be in a better place, it doesn't give that much comfort at times. I lost my dad two years ago to CHF and will keep you in my prayers. God bless you and your family. fastlanedelivery@flash.net


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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