The paperwork never ends The Archives
October 1-15, 2004 Archive Index

Karen K's 10-1 reply to Carla's 9-30     depression experience
Robert 10-1     seek CHF doc in New York City
Linda O's 10-1 reply to Jon's 9-30     excess fatigue
Jon's 10-1 reply to Linda O's 10-1     drugs and excess fatigue
Bob L's 10-1 reply to Bonnie K's 9-30     pacemaker experience
Dick's 10-1 reply to Art's 9-23     seek milrinone experiences
Donna H's 10-1 reply to Jon's 9-28     how was your Vo2max test?
Jon's 10-1 reply to Donna H's 10-1     Vo2max test today
Jon 10-2     Vo2max test explanation
Crystal 10-2     should I stop spironolactone?
Jon's 10-2 reply to Crystal's 10-2     spironolactone & heart failure
Harry 10-2     really like the site
Sandy's 10-2 reply to Carla's 9-30     I think about it too
Vicki 10-4     seek suggestions for constipation, stomach pain
Jon's 10-4 reply to Vicki's 10-4     constipation, stomach pain
Susan 10-4     seek ideas on driving with ICD
Sandy 10-4     heart pump trial in UK
Valerie R's 10-4 reply to Jon's 10-1     exercise
Jon's 10-4 reply to Valerie R's 10-4     exercise
Joy 10-4     is lower leg & foot pain common?
Tom C's 10-4 reply to Carla's 9-30     always aware of my heart
Pam's 10-6 reply to Vicki's 10-4     constipation
Scott Brown's 10-6 reply to Caroline's 9-30     don't let doctors dash hope
Mike's 10-6 reply to Margaret's 9-25     Medicare
Marcia's 10-6 reply to Joy's 10-4     peripheral artery disease experience
Carla 10-6     what happened to my blood sugar & lipids?
Lori K's 10-7 reply to Carla's 10-6     blood sugar & lipids
Tom 10-7     will CoQ10 help me?
Pat H's 10-7 reply to Carla's 10-6     blood sugar & lipids
Chuck F 10-9     seek aneurysm, surgery experiences
Jack D's 10-9 reply to Tom's 10-7     CoQ10
Jamie 10-9     is Altace better than others?
Bill's 10-10 reply to Jamie's 10-9     switching from Altace experience
Dave 10-10     need some information
Jon's 10-10 reply to Dave's 10-10     hope it helps
Jack D's 10-10 reply to Jon's 10-9     not Rx forms
Jon's 10-10 reply to Jack D's 10-10     Rx supplements
Joy's 10-10 reply to Marcia's 10-6     still working on a diagnosis
Midge P 10-10     sweats and gout questions
Eddie 10-11     not enough money for treatment
Jacky 10-11     do I need a cath before pacer?
Joseph P 10-11     constipation experience
Bill's 10-11 reply to Eddie's 10-11     have you tried county assistance?
Jamie 10-11     thank you for replies
Stephanie 10-11     intro
Linda's 10-12 reply to Eddie's 10-11     financial assistance
Roger H's 10-12 reply to Jon's 10-10     prescription supplements
Chuck F's 10-12 reply to Eddie's 10-11     getting free meds
Chuck F's 10-12 reply to Stephanie's 10-11     congratulations and more
Donna V 10-12     flu shot advice
Greta's 10-12 reply to Eddie's 10-11     getting financial assistance
Bob 10-13     seek depression on beta-blockers experiences
Keith 10-13     seek BiV pacemaker experiences
Pam's 10-13 reply to Donna V's 10-12     find a flu shot at this web site
Shane 10-13     update
Sherry 10-13     seek low sodium recipes
Valerie R's 10-13 reply to Eddie's 10-12     getting meds samples
Valerie R's 10-13 reply to Donna V's 10-12     getting flu shots
Jack D's 10-14 reply to Sherry's 10-13     eliminating sodium from recipes
Betty 10-14     seek ideas on cholesterol management
Chuck F's 10-14 reply to Bob's 10-13     depression experience
Pam's 10-14 reply to Bob's 10-13     depression experience
Quentin's 10-14 reply to Stephanie's 10-11     kicking the habit
Quentin 10-14     seek input on to work or not to work
Quentin's 10-14 reply to Carla's 10-6     Coreg and blood sugar
Roger H's 10-14 reply to Sherry's 10-13     cooking low-sodium & low-carb
Sandy's 10-14 reply to Donna V's 10-12     thanks for the flu shot tip
Scott B's 10-14 reply to Sherry's 10-13     eating low-sodium
Tom C's 10-14 reply to Bob's 10-13     similar experience
Venita's 10-14 reply to Stephanie's 10-14     kicking the habit is great!
Victor Whitmore 10-14     life changes
Carla's 10-15 reply to Quentin's 10-14     to work or not to work
Chuck F's 10-15 reply to Quentin's 10-14     to work or not to work
Diana 10-15     seek similar experiences
Jean 10-15     valve surgery versus meds - anyone else?
Katherine H's 10-15 reply to Keith's 10-13     biventricular pacemaker experience
Keith 10-15     my cholesterol has improved
Marty's 10-15 reply to Victor's 10-14     thanks for your post
Rick Benfield 10-15     introduction
Venita 10-15     request for information

Karen K's October 1 reply to Carla's September 30, 2004 - Hi Carla, I can identify with you so much. Following my diagnosis in 1991, I spent a minimum of two years in a state of depression and obsessive thinking about my heart and what was going to happen to me. Believe me, the sooner you can get on with your life the better off you will be and life will become something you want to participate in again.
     I personally am treated with medications for my anxiety and depression by my primary care physician. In addition, I see a therapist as needed. The "as needed" sessions have decreased over time and I now call a session my "tune-up."
     Not all primary care doctors are in agreement over prescribing psychotropic medications. You may initially need to see a psychiatrist but in my opinion, if you can find a cooperative PCP who will work with you and your counselor, that is the route to go. Do be sure all of your doctors are fully aware of your condition and all medications you take. Please feel free to e-mail me if you like. Best wishes, Karen K.

Robert, October 1, 2004 - Hi, I am seeking a heart failure doctor in New York City. I have found Columbia to be to confusing, always a new doc, and charting is poor, to say the least. Thank you.

Linda O's October 1 reply to Jon's September 30, 2004 - Hi Jon, Do you mean some of your vitamins were causing your fatigue? I too have started having old fashioned leg aches (Osgood-Schlatter Disease when we were young). The fatigue is getting to me and I have tried to reason it out with no luck. Linda Oline, age 64, EF 24%.

Jon's October 1 reply to Linda O's October 1, 2004 - Hi Linda, Shame on me, I should have been much more clear on that one! I take triazolam for getting to sleep and discovered that at a nightly dose of 0.25mg, I have powerful residual fatigue the next day. My painkillers - for lower leg and foot pain - were combining with that residual sleeping pill effect to hammer me down hard. So now I just go with disrupted sleep if necessary twice a week, taking no sleeping pills at all. I now never take more than 0.125mg of triazolam at night and it is making a big difference. Jon.

Bob L's October 1 reply to Bonnie K's September 30, 2004 - Hi Bonnie, I had a pacemaker inserted on 5/23/2003 and it has been great. At one point my beat went down to 20 per minute. Since then I have had no problems and I had 5 stents put in the arteries to my heart on 6/03 of this year. Tell your mom that it will be a blessing. If you have any further questions, send me an e-mail. God bless you both.

Dick's October 1 reply to Art's September 23, 2004 - Hi, I am trying to get info on Milrinone, an inotrope. I would appreciate any comments on type of infustion, results, side effects, etc. Thanks.

Donna H's October 1 reply to Jon's September 28, 2004 - Okay Jon, October 1st is over now, what is your Vo2max? <g> I hope the numbers went up and all that exercise paid off. As you said, it is hard to exercise when you don't have the capacity for it and that is my husband's problem. Up until this Spring when he got so ill, we were going to an indoor pool a couple of times per week. That seemed about the best exercise for him. Unfortunately, he is having to rebuild his strength after so many months in the hospital and being homebound.
     Right now he is feeling pretty good even with such a low EF and low Vo2max score. He tires easily but started giving some music lessons and coming to work a couple of hours per day. Probably he is feeling so much better because he had two days of dobutamine infusion a couple of weeks ago. When he feels good, it is more difficult to think about transplant but we know that he can go downhill very quickly. For now we are just going to read everything we can find, keep up our prayers and remember that God is in control.

Jon's October 1 reply to Donna H's October 1, 2004 - Hi Donna, Ask me at the end of next week, after the pulmonologist interprets the results and gets them to my cardiologist. I will say that the 2 years of religiously regular exercise did pay off. I am reasonably certain my score will be at least 27 ml/kg/minute, much better than my score of 20 two years ago. I lasted 17 minutes before the one-minute cool down and stop, and hit a grade 12 at 3.4 miles per hour. Jon.

Jon, October 2, 2004 - Howdy-doo, I should have explained my Vo2max test a little better, so here goes: A treadmill Vo2max test varies both speed and incline. Mine started at 1.7 mph with no incline. At about 2 minutes, speed remained the same but incline went to 4 on a scale of one to 22. After 3 minutes more, speed remained the same but incline went to 8. Another 3 minutes later, speed remained the same but incline went to 12. Then, the incline remained at 12 but speed increased until when I stopped the test, it was at 3.4 mph.
     I have been resistance training (weight training) for 2 years now at 3 days of weight training followed by one day off. I have been aerobic training (walking our treadmill) for a year. I now walk at home on zero incline (flat) at 3.8 to 3.9 mph for 30 minutes a day at 2 days of walking followed by one day off. I don't know what the interest level in this is, but if people ask me, I'll add my exact exercise routine to my exercise page. Let me know. Jon.

Crystal, October 2, 2004 - Hello, I went to see the my doc a couple of days ago and he wants to take me off spironolactone (Aldactone). He said that it is for patients in "severe" heart failure. I am at a 35% EF now. Two years ago when I was diagnosed, it was 10%. I'm happy that it is no longer severe but why take me off it now? I have to admit I don't like change and I worry that if I stop taking it I might get worse again. What do you all think?
     I am 27 years old and was diagnosed 2 years ago with heart failure due to cardiomyopathy. I have a mitral valve leak, asthma and a family history of CHF. I am quoting my doctor's reason as to why this probably happened to me. Thanks.

Jon's October 2 reply to Crystal's October 2, 2004 - Hi Crystal, While your doctor is technically correct, we now know that aldosterone blockers like spironolactone have added benefits when used with an ACE inhibitor. See for more. Jon.

Harry, October 2, 2004 - Hi Jon, It's nice to see you keeping the site up and going. You definitely deserve a round of applause! The fact that you stress getting a heart specialist and reading the FAQs you've posted should be mandatory for those who stumble on to your site. Thanks again, and you are quite right, dogs are great! Best regards, Harry.

Sandy's October 2 reply to Carla's September 30, 2004 - Hi Carla, Don't feel bad. I too think about my heart each day. It's getting anoying, to say the least. It's been over a year and a half since my diagnosis. I told myself just the other day, "I have to find something else to think about!" Good luck, and it will get better, I'm sure!

Vicki, October 4, 2004 - Hi, My husband takes 6.25mg Coreg twice a day and 2.5mg Altace once a day. He has been having severe stomach pains, nausea, and super severe constipation. Could these be caused by either or both drug? They have done CT scans and all sorts of tests but find nothing. One other strange thing is that late in the night or first thing in the morning, if he takes a drink of water it will set his stomach off. Thanks for any help.

Jon's October 4 reply to Vicki's October 4, 2004 - Hi Vicki, These could be entirely unrelated to his meds - or not. Stomach pain can be caused by ACE inhibitors in some people; see Constipation and upset stomach are common side effects of statins (cholesterol lowering drugs) if he takes one. As obvious as it sounds, not eating enough fiber can cause some serious constipation as well so carefully review his diet and his water intake. Dehydration can wreak all kinds of havoc in heart failure patients, as can improper electrolyte levels, so be sure to check all these things as well. I hope others post with more suggestions! Jon.

Susan, October 4, 2004 - Hi all, This is a great site, thanks. I had my ICD implanted 5 years ago. I never got a shock until last year. According to the state law, I stopped driving for 6 months. Now I can drive but my doctor suggested that I not drive since I still have occasional arrhythmia recorded by my ICD. I have to drive to work but I don't want to pass out on the highway. I am wondering how to deal with it besides moving closer to work? Also, how do you deal with it mentally? Thanks a lot.

Sandy, October 4, 2004 - Hi, I found some new info I'd like to share with everyone, it's so very interesting. See, a heart pump trial to start in the United Kingdom. I wish them success.

Valerie R's October 4 reply to Jon's October 1, 2004 - Hi Jon, I am really impressed with your scores! The first time I went to the transplant evaluation, I only scored an 11. I did a great deal of work with the treadmill and six months later came out with a 14. I think your workout time is impressive, as is your speed on the treadmill. I truly don't like the treadmill but force myself to do it at 2.8 mph for 30 minutes. I used to go much faster but am working now on length of walking instead of speed.

Jon's October 4 reply to Valerie R's October 4, 2004 - Hi Valerie, I think I started at 8 minutes going about 2 mph. <g> I worked up to 40 minutes at 3.9 mph but crashed and burned. I just can't sustain that kind of walking every day but have managed to sustain the 30 minutes at about 3.9 mph two days on, one day off. I don't think anyone really likes walking on the treadmill !
     My lowest Vo2max score was 13.5. That went to 19, then to 20, with each test about 2 years apart. I'll let you know how this one really came out as soon as I have a definite number. I'll also post my cholesterol numbers. As my wife will tell you, I am almost fanatic about my exercise. I believe that intelligent and dedicated exercise is the only way to force your body to make the best possible use of the oxygen your heart provides, be it a lot or a little. What constitutes intelligent exercise will vary depending on a person's individual situation at the time. Jon.

Joy, October 4, 2004 - Hello folks, It's lovely to be able to check in. Back to the painful lower legs (and feet) comments. How widespread is this? For me, at present it is major problem and I have not yet succeeded in convincing my health supporters that this pain may be connected to my heart disease - I still have not had irrefutable diagnostic evidence of my heart disease but I am booked in for an angiogram. Joy in New Zealand.

Tom C's October 4 reply to Carla's September 30, 2004 - Hi, I too think about it every day, in fact, nearly all the time. It's always at least in the back of my mind. One reason it's there is that my symptoms are always there: Weakness, fatigue, shortness of breath. These produce a constant sense of malaise that affects everything. I feel this apart from my depression, which is kept mostly at bay with antidepressants.

Pam's October 6 reply to Vicki's October 4, 2004 - Hello, I finally went to a gastroenterologist for stomach pain, gas and constipation. The pain escalated after I started taking Zocor. He put me on an acid reducer called Protonix and that has helped my pain and gas tremendously. He also prescribed MiraLax as needed. It retains the water in the fecal matter so it doesn't get as hard in your colon - it's not a stimulant laxative. I also use Benefiber powder and Fiber Choice chewable tablets. I love the Benefiber because you can stir it into anything and there's no grit and no taste. I add Golden Flax Seed to my cereal, oatmeal and muffins, and always choose cereal with at least 5 grams of fiber. See I also starting taking magnesium with my calcium supplement. My PCP recommended a little Milk of Magnesia for constipation and that provides overnight relief but not regularity. I hope this helps.

Scott Brown's October 6 reply to Caroline's September 30, 2004 - Dear Caroline, How old is your father? My father had heart failure as well. There is nothing worse than a doctor telling your father he has no options. What is his current therapy: Drugs, exercise, diet restrictions, etc? What is the root cause of his CHF? How long has he exhibited heart failure (symptoms)?
     My father was originally diagnosed with dilated cardiomyopathy and a bad valve, and had cardioversion many times. The cardiologist eventually told him there was nothing more they could do than sustain the meds. A new cardiologist changed all that and gave my dad hope. It just proved it was worth shopping around for the right doctor. It's really important not to look at this disease as a death sentence. Take care, Scott B.

Mike's October 6 reply to Margaret's September 25, 2004 - Hi, I also am a heart failure patient receiving SSD and going on Medicare December 1st. I have had excellent coverage for the past several years even though it has gotten more expensive. My understanding is that they cannot refuse you if you apply within the first 6 months.
     My problem is medications. My wife and I took 10,500 dollars US in medications through August 30. We could easily hit 15,000 dollares for the year. It seems that these days I get as many Medicare pitches in the mail as credit card applications.
     By the way, I am 60 years old. I have CHF, diabetes, an ICD, and have had bypass surgery. It doesn't make sense that you could be turned down because of age. I do get a retirement check from an insurance company and it is definitely not their goal to pay claims. ;-) I am going to some of the seminars and will ask your question.

Marcia's October 6 reply to Joy's October 4, 2004 - Hello, I am not a doctor but recently had three stents in my left leg because of a blockage in the illiac artery. Peripheral artery disease can affect arms and legs as well as stomach. I also had blockages that required stents. I am a long-term cardiac patient as well. One of my main symptoms was that the pain would diminish if I hung my leg over the side of the bed or put my leg and foot down from the recliner. I was diagnosed using blood pressure checks of my arms and legs.

Carla, October 6, 2004 - Hey all, What's happening to me? All of a sudden I get blood work done and find out that my glucose is 149 and my triglycerides are 311. My good cholesterol is right on the money but my bad is a little high at 214. I never had problems with any of this before and I've been exercising and watching my diet a whole lot better since getting DCM. So why is everything else falling apart? It's been mentioned that Coreg can mess with your blood sugar. Is this true and have any of you experienced this? I was so excited that my BNP reading was 5 but then they dropped the bomb.

Lori K's October 7 reply to Carla's October 6, 2004 - Hi Carla, I was just wondering if you were fasting for 12 hours before your bloodwork. If not, your high glucose, triglycerides, and LDL may be due in part to not fasting. My numbers really vary according to my diet and exercise over the prior 6 months. Sometimes when we watch salt so closely we actually can increase fat (meat, nuts, etc.). Coreg made my blood sugar go up initially and now 3 months later, my glucose is way down around 60. If your prior numbers were normal, you may need another blood test done in a few months, and make sure to watch the saturated fat and sugar in your diet!
     At least there are statins for your bad cholesterol if you need them. Ask your doctor to compare your results from last time, and come up with a plan. There have been times I have wondered if certain tests I have had done were actually on my body! I had an echo with an EF of 69% once that I swear was someone else's! Take care, Lori K.

Tom, October 7, 2004 - Hi, I am wondering about CoQ10. Is it good to take? Is it a perscribed drug? I see a lot of people take it. Will it interfere with my other drugs? I take isosorbide mononitrate, hydralazine, Coreg, glyburide, niacin, aspirin, and a vitamin. I also get bouts with gout. Will this have any inprovements on my heart? I won't see my doctor for another month - should I wait to ask him? I go to the VA and most of the time I don't get to see the same doctor. Any information would be appreciated. Tom.

Pat H's October 7 reply to Carla's October 6, 2004 - Hello, My last bloodwork showed a rise in my glucose from normal to borderline high. We will retest in another month. The same bloodwork showed my total cholesterol went up a bit but my triglycerides went from 140 back in the late spring to over 400. I have been told by the docs that Coreg can mess with both the blood sugar and cholesterol. Isn't life fun? They treat you for a disease only to cause another to pop up. Chemo caused my DCM and now the treatment for that might create another chronic health issue. Oh well, I made it through another day and that is the important fact.

Chuck F, October 9, 2004 - Hello, About heart reconstruction surgery, has anyone undergone surgery to remove an aneurysm from their heart and reconstruct the heart? I will be undergoing this very soon and would be anxious to communicate with someone that has undergone this. Thank you very much.

Jack D's October 9 reply to Tom's October 7, 2004 - Hey Tom, CoQ10 is not a drug. CoQ10 is an extremely vital substance that is produced by your body that helps to deliver energy at the cellular level, which in turn nourishes and helps rebuild muscles. Age, heart problems, and prescription drugs (especially statins) stifle the body's ability to produce CoQ10. CoQ10 deficiency causes massive problems for your body, the least of which is heart failure.
     Don't bother asking your doctor. Most of the doctors who even know about CoQ10 are too stupid to recommend it even when they know that prescribing statins reduces it. One of the major statin manufacturers knew that is was reducing the CoQ10 produced by the body so they added it to the formula, but it didn't fly financially so they removed it.
     Asking if CoQ10 will interact with a drug is the same as asking if your red blood cells will interact with a drug. Both are necessary for you to be alive and both are produced in your body unless something causes your body to stop producing enough - like a drug.
Jon's note: Last time I checked there was a prescription form of CoQ10 available, just as there are prescription forms of L-carnitine available.

Jamie, October 9, 2004 - Hi Jon and everyone, I've been enjoying your posts on the message board. Recently my health insurance disapproved giving me Altace. I was wondering if this ACE inhibitor was better than the other ACE inhibitors. I've been taking it for three years and I am doing well with it. I don't want to change but it is very expensive. Thanks.
Jon's note: As far as I know, ramipril has no specific properties that set it apart from other ACE inhibitors. For what it's worth, I do as well on Monopril as I did on Vasotec.

Bill's October 10 reply to Jamie's October 9, 2004 - Hi Jamie, Because of the cost of Altace, my health insurance wouldn't pay for it either so I was switched to a generic brand called lisinopril, and I'm doing fine on that.

Dave, October 10, 2004 - Hello everyone, I'm new to this posting site and have a quick question that I hope someone can clarify. What's the difference between decompensated heart failure and CHF? I've recently obtained a complete copy of my records from my old cardiologist, which has provided me with many details of my heart problems previously not discussed with me, such as uncompensated heart failure, wall aneurism, thinning of left chamber walls, EF of 35% (last stress test 2 years ago), no contraction of two chamber walls near apex of heart, etc.
     I am age 46 with 2 previous MIs at ages 35 and 40, one angioplasty and one stent, take beta-blocker, ACE inhibitor, aspirin, diuretic, and a cholosterol-lowering drug. After 12 years of treatment, I thought my doctor was no longer interested in my treatment. I started having new symptoms of shortness of breath and chest discomfort when doing yard work, called to make appointment and was told 6 weeks at the earliest. Time to get a new doctor! Dave.

Jon's October 10 reply to Dave's October 10, 2004 - Hi Dave, I am sorry to hear you are having symptoms again. It's definitely time for a new heart doctor. For everyone, if you have a cardiologist and start having chest pains - especially with other symptoms like SOB - your heart doctor should see you immediately without hesitation, even if he has to work you into a crowded schedule. New-onset chest pain is not something to put off!
     Dave, See The Manual for info on being "in" heart failure as opposed to "having" heart failure. Let me know if that doesn't explain it well enough. Jon.

Jack D's October 10 reply to Jon's October 9, 2004 - Oh boy Jon, Prescription CoQ10 - just what I always wanted, something 5 times more expensive and less effective and less potent.

Jon's October 10 reply to Jack D's October 10, 2004 - Howdy-doo Jack, I don't follow your reasoning on this one, which is unusual. As much as it pains me to say it, we usually think a lot alike! <g>
     I switched from over-the-counter L-carnitine to prescription Carnitor and was impressed by the differences I noticed. The prescription tablet physically breaks down after a week out of the foil; I noticed a difference in my energy level after about 2 weeks on it; and my recovery from exercise improved. I did not notice these differences when taking over the counter L-carnintine even though I took the same dose, so I wonder if over the counter supplements in general contain the claimed potency and amounts of ingredients. These are just my personal observations. I have not had any samples analyzed.
     When the FDA sent "anonymous" people to stores to buy supplements over the counter a few years back and then analyzed the contents, very few lived up to their claimed ingredients. Generally, the more expensive the brand, the close to their labeled claims the ingredients were.
     Thus, I want the prescription form whenever I can get it and afford it, just to be more certain of getting what I am paying to get. How do you figure prescription forms are less potent when their makers must use certified facilities, are regulated, and are subject to federal enforcement actions while over-the-counter supplement makers are not bound by any of these conditions? Jon.

Joy's October 10 reply to Marcia's October 6, 2004 - Thank you Marcia, That does help me to research and consider. I have also Jon, looked up some of the med info for peripheral artery disease. My journey for a diagnosis continues, slowly but it is progress. SOB, chest discomfort and leg problems often quite severe but a serious rest and relaxing eases the symptoms. I am managing a gentle life style much better now, thanks to all the info contained on this messagae board. Light and life to all. Joy in New Zealand.

Midge P, October 10, 2004 - Hi everyone, I have been diagnosed with heart failure due to DCM. I also have mitral valve regurgitation and left bundle branch block. I am on Coreg, Demadex, Zocor, Cozaar, spironolactone, and Prevacid. I have a biventricular pacemaker implanted. With all this I do fairly well most days.
     I do have a couple of questions, Is it common to have hot sweats, both during the day and at night? Also, is there any connection between heart failure and gout? I was recently diagnosed with gout and was told that it was probably brought on by CHF.
     I really like this site - it has given me so much positive input on heart failure and a brighter hope for the future! Thanks for all you're doing, Jon! Midge.
Jon's note: Gout is often caused by diuretic use.

Eddie, October 11, 2004 - Hello everyone, I have had cancer and depression, I had a heart attack 4 years ago and three stents implanted in the last 4 months, plus medication I took when I had my heart attack (Baycol) left me in pain on an everyday basis. I cannot afford to pay for doctors and medicines. I often go to churches to beg for money to pay for medicines. I am tired of it. Social Security Disability sends me only $222 a month. Is it a crime to be poor?

Jacky, October 11, 2004 - Hi, My doc thinks I would benefit from an biventricular pacer but wants to do a cardiac cath first. Is this usually done and what will the cath show other than blockages? I have idiopathic dilated cardiomyopathy and LBBB with an ejection fraction of 35%. Thanks for any advice. I am a bit apprehensive about all this!

Joseph P, October 11, 2004 - Hi, Constipation was a big problem with me. I took colace, mirlex, Milk of Magnesia, mild Ex-lax, and they all eventualy hurt my stomach and everything attached. I was at a heart failure clinic and a nurse with many years of experience told me that I was attacking the problem from the wrong end and suggested I use mineral oil and a very mild soap in a retension coloni. I have done it many times and I have been constipation-free for about 3 years. When I feel constipation coming on, that is when I do it. Thanks and God bless, Joseph P.

Bill's October 11 reply to Eddie's October 11, 2004 - Hi Eddie, Sometimes it seems to be a crime not to be rich. Have you applied to your county social service office for med assistance?

Jamie, October 11, 2004 - Thank you Jon and Bill for the replies, It made me feel a lot better knowing the other ACE inhibitors worked for you and probably will for me. I just don't want to go to the hospital again. Thank you for the reassurance.

Stephanie, October 11, 2004 - Hi all, This is my first post. I am a 44 year old mother of two, recently diagnosed with IDCM and heart failure. My EF is 20% and my symptoms include SOB, chronic fatigue, and leg pain - pretty normal from what I am gathering.
     I am still functioning and my doc puts me somewhere between class one and 2. I personally think between class 2 and 3. Some days I just cry having to summon the energy to get up, shower and go to work. All these years I have attributed these symptoms to my being super woman - and of course to the smokes! I am 32 days without a cigarette now! It is definitely one of the hardest things I've ever had to do.
     This site has provided me with a lot of very helpful information, that I can understand. Thanks to all for sharing.

Linda's October 12 reply to Eddie's October 11, 2004 - Hi Eddie, It is certainly rough being sick and poor! With only $222 from SSD, you should be eligible for SSI and you would get Medicaid with that. Also, most drug companies have patient assistance programs that will provide meds for those of us who can't afford them otherwise. See if you can get in touch with a good clinic or hospital social worker.

Roger H's October 12 reply to Jon's October 10, 2004 - Hi Jon, I totally agree with you on the prescriptions. My cardiologist has me on Carnitor and folic acid just to make sure I get the full dose he wants me to have daily. He hasn't given me the CoQ10 yet. That is included in the powder that I take from his office.

Chuck F's October 12 reply to Eddie's October 10, 2004 - Hi Eddie, One thing many physicians do not let their patients know is that they all have free medicines they get from their drug reps. They generally save them for the poorest or elderly. It never hurts to let them know how in need you are and ask them for any samples they may have.

Chuck F's October 12 reply to Stephanie's October 11, 2004 - Hi Stephanie, Congratulations on stopping the smoking - that is the number one thing to help. I smoked for years before my heart attack and resultant heart failure, and quitting smoking was a big help. The next thing you need to make sure is that you study your medicines. Many of the medicines for blood pressure and heart failure can cause your lack of energy, so talk with your doctor to see if changing the time of day you take them will help (or don't take them all at the same time).
     There are a lot of other things that can help. If there is a cardiology nurse practitioner in your area, see if you can get hooked up with him or her. Nurse Practitioners are so much better at patient teaching with chronic disease. Also make sure you are seeing a helart failure specialist. Again, congratulations on your big step and good luck.

Donna V, October 12, 2004 - Hi all, To anyone living in an area where doctors' offices and Health Departments have no flu vaccine and who have to go to one of the drugstore or grocery store type "high risk" flu vaccine clinics, go very early and take a chair with you. I went 2 hours early today. There was no orginization of any kind. Someone waiting thought to start a list of names and numbers after at least fifty people had come in to wait. I was there 3 hours and was number 20 on the makeshift list, which is what the nurse used. I'm grateful to have the flu shot and that a friend suggested I go early and take my own chair! It was still an exhausting afternoon. Donna V.

Greta's October 12 reply to Eddie's October 11, 2004 - Hello Eddie, A good web site for those who need assistance with buying medications is Try this site and see if it will help. There are other similar sites listed at You also need to check for other government, state, or local services that might be available to you. I would definitely get back with SSA and see if you qualify for more assistance. Blessings, Greta.

Bob, October 13, 2004 - Hello, I am in a mess and would like to share. I was taking antidepressant medication for a period before I developed CHF. There seems to be no way I can tolerate either Coreg or Toprol-XL in even small doses. Beta-blockers make me actively suicidal. Depression is a very serious medical disease. I would appreciate any feedback or ideas on this. My cardiologist can see that I just can't handle the depressive side effects that may occur. Has anyone dealt with this problem?

Keith, October 13, 2004 - Hi, I would like to hear the experience from any CHFer who has a biventricular pacemaker. The longer placement, the better. My EF is 20% with no change since 1999. I consult with the Loma Linda Heart Institute implant staff on 11/01/2004. I have familiarized with the biventricular pacemaker but need to hear from folks who wear it every day.

Pam's October 13 reply to Donna V's October 12, 2004 - Hi y'all, If you need to find flu vaccine in your area, try this website: It's the American Lung Association and it lets you search by zip code.

Shane, October 13, 2004 - Hi y'all, I just wanted to give an update on how the transplant situation is going. I had a doctor visit 10-06 and they want to run an echo in 3 months and see how things look then. Symptoms-wise (shortness of breath, weakness, etc.) I feel pretty good, but my actual heart condition is not so good. I'll keep y'all updated, and will appreciate your thoughts and prayers. Shane.

Sherry, October 13, 2004 - Hi, This may sound strange but I am finally ready to take CHF seriously, for lack of a better description. I think I am in denial a lot. I was diagnosed about 9 years ago. I do have boughts of self pity and depression, mostly because I have teenagers and it saddens me that I may not be around a long time. Of course, who amongst us knows? You all probably know what I mean. So, the taking it seriously is mostly about diet. It sure is hard to give up food. I was never a salt person but man, it is hard to find stuff without salt! I love chocolate too. Has anyone found a good cookbook with salt-free recipes?

Valerie R's October 13 reply to Eddie's October 12, 2004 - Hi Eddie, Chuck is absolutely correct. My doctor is always giving me samples - cardiologist, endocrinologist, all the "gists." I don't really need them, but my cardiologist office's nurses have told me that, if I do, they will save the samples for me. I've seen people go away with bags of meds. The moral is, always be especially kind to nurses!

Valerie R's October 13 reply to Donna V's October 12, 2004 - Hello Donna, That's good advice. We all need the flu shot and the long lines down here in Miami at certain grocery stores have just been awful. There are people in walkers and wheelchairs and with caretakers. I arrived 1-1/2 hours early and was about 10th in line. I purchased a $30 cane with stool, because standing for long periods in the heat is really rough. I ended up giving it to someone else; most people who had the seats did. Whoever thought this was the way to distribute the vaccine was totally nuts. The manager of the grocery store had water delivered to each person in line. It was a hot, humid, sunny Miami day. I understand the vaccine may now be delivered in a different manner.

Jack D's October 14 reply to Sherry's October 13, 2004 - Hi Sherry, That's simple. Get you a magic marker and black out the word salt, sodium, baking soda, baking powder and any other ingredient that contains sodium on any recipe you want.

Betty, October 14, 2004 - Hi everyone, I recently had a physical with all the requisite lab work done. I got the results today and was told that my cholesterol was a whopping 301. I asked my doctor how this is possible since my low sodium diet restricts so many foods that happen to also be high in fat. He said that it may just be that my body doesn't metabolize cholesterol very well. I'm wondering if this may have more to do with all the medications I'm taking since I've heard that Coreg sometimes affects these levels. I'm at my wit's end trying to manage my diet. He said I may need to go on a statin drug but wants to retest me in 6 months. I'd appreciate any suggestions or cook books on how to develop a low sodium, low cholesterol diet. I have to say that this web site has been a true blessing. Thanks Jon, for creating it!
Jon's note: In my opinion, Coreg does raise LDL blood level. Exercise is the most effective way to fight it.

Chuck F's October 14 reply to Bob's October 13, 2004 - Hi Bob, I also suffer from depression in a major way. I went through several different medications before I found Lexapro, which definitely helped me in a big way. The important thing I see here is there needs to be a close connection between yourself and your health care providers. Have you seen a psychiatrisdt or psychologist? My psychologist saved my life and made me realize that the brain gets sick as well as the body.
     Support groups are a ggod help as well. The best thing I found is "Me Time" especially around nature (trees, animals, water). There should be close contact between your psych doctor and your medical doctor. With the amount of medicines and alternatives available they should be able to find a good combination for you. Good luck.

Pam's October 14 reply to Bob's October 13, 2004 - Hi Bob, Are you seeing a psychiatrist who specializes in medication management? I have battled depression and anxiety for years, and have found that a good psychiatrist is very useful. It does take time and experimenting with different drugs to find the best mix but when you do hit on the right chemistry, wow, life can change! There are many drug options available. Hopefully there is one that would work for you and could help you tolerate heart meds better. The best way to find a psychiatrist is through friends or a trusted physician. You can also search for a pyschiatrist by city/state on the American Medical Association web site at
     I encourage everyone to seek treatment for depression using both medication and therapy if needed. Of course, there will still be some highs and lows but I walk this path daily and life can be better. Please don't give up hope. ;-)

Quentin's October 14 reply to Stephanie's October 11, 2004 - Hi Stephanie, We seem to have similar diagnosis. I was recently diagnosed (05/09/2004) with IDCM. I just reached 20% EF, and I'm fighting the dilemma to continue working. I too found it hard to let go of the smokes, but I can't even look at a smoke without gagging. I have been smoke-free since May when I put them down for good.
     I have to admit that sometimes I crave one but not nearly as much as I used to crave them. In fact, I only crave when I do things that used to cause me to smoke, like watching sports, BBQing, etc. I have since learned to re-channel those cravings. I find healthy snacking helpful, like baby carrots and ranch dressing, yogurt, etc. Hang in there, and know that you're not alone. You can beat that demon.

Quentin, October 14, 2004 - Hello all, I have a dilemma and I would like to hear some feedback from you all. I am a 27 year old former Marine (1995 to 2000), with CHF, idiopathic DCM, V-tach, narcolepsy, G-6PD deficiency, and ICD (06/30/2004). I am married since 10/11/2003 and I have 2 kids. I was diagnosed with CHF/DCM on Mother's Day of this year. I spent 4 days in ICU with 2 events of heart stoppage.
     I am a patient of Dr. Torre at Baylor College of Medicine at Methodist hospital in Houston, Texas. I have since moved on to become better physically and I'm doing as well as could be expected. My EF is now 20%, up from 10 to 15%, but everything else has remained the same. I am not where doctors hoped I'd be, but I haven't necessarily declined. I've been considered for transplant since I was diagnosed but they are trying their hardest to keep me off that radar.
     I can't get a doctor to give me a stress test for their fear that I may die. Since I am a strong willed, determined individual, I've since gone back to work. It is rough, but I have a family to support. I was told I possibly could not work full-time so I filed for SSD and I am currently fighting for my VA benefits. Since winning SSD recently, I have come to a crossroads: Should I accept it all or should I try to continue to be a productive human being? The thought of not working is one that I don't think I can handle, but the more I try to work, it just gets harder each day - getting up, getting ready, helping with the kids, going to work, you know, all the things millions of people do on a daily basis. Each day is hard, as all of you CHFers know.
     I've had so many down days that I make a depressed person feel happy. There are days when I'm too tired to even get up. Being a Marine, I'm used to pushing myself but I'm only 27. I could see if I was 60, 70 or 80 years old. I would have lived a good, productive life already. I haven't been told by my doctor that I shouldn't work, but in a roundabout way I shouldn't. I'm just stuck, both mentally and morally.
     I would just like to hear from fellow CHFers who have gone through this or could give me some sort of insight. Thank you and God bless you all.

Quentin's October 14 reply to Carla's October 6, 2004 - Hi Carla, I too have had the same bomb dropped. I have DCM and the day before my ICD was implanted, the paramedic decided to check my blood sugar and found that it was low (all this after I had just eaten). So, much to my suprise they mistook me for a diabetic. My cardiologist said that it may have been a combination of things. For one, and probably most important, it was thought that I moved too fast with my Coreg doses in such a short period----from 12.5mg to 18.75mg, in just 3 weeks. He basically said that Coreg has the potential to mess with your blood sugar as well as your cholesterol. I've since gone back down to 12.5mg twice a day and things are better.

Roger H's October 14 reply to Sherry's October 13, 2004 - Hello, A cookbook that really saved me was The No-Salt, Lowest Sodium Cookbook. Mine is in a very used condition after 3 years - many excellent recipes! Even then I may modify for the carbs as I'm type 2 diabetic. Most of the dark chocolate I 've found is no sodium. As far as the other products, if there is a Meijers or Kroger, that's where I find a lot of my no or low sodium items. The health food stores would also be able to help on that. I hope this helps!

Sandy's October 14 reply to Donna V's October 12, 2004 - Hello Donna, Thanks for the advice about bringing your own chair. I did just that, sat in the parking lot of our our local grocery store to get my shot and I was number 108 out of 250 shots to be given. It took me just about 9 hours from start to finsh but I am grateful to have it. Also, I made a few new friends.

Scott B's October 14 reply to Sherry's October 13, 2004 - Hi Sherry, How much sodium has your cardiologist advised you can have per day. It is not likely a completely sodium-free diet. Do you take diuretics on a regular basis? Thanks, Scott B.

Tom C's October 14 reply to Bob's October 13, 2004 - Hi Bob, I had a similar experience - I got depressed on Coreg, but not to the point of suicide. My doctor took me off Coreg, saying some people simply can't handle beta-blockers. He replaced Coreg with two drugs: Isosorbide dinitrate and hydralazine. A recent study showed this combination very effective for African-Americans. I'm feeling somewhat better physically and emotionally off Coreg. I hope you find a solution.

Venita's October 14 reply to Stephanie's October 11, 2004 - Hello Stephanie, Congratulations on stopping smoking. I am a registered nurse on a coronary care unit and that is the risk factor that is stressed the most. It is hard especially when you have friends and family that continue to smoke. There are things on the market that can help you, for example, nicotine patches and gum. I suggest you talk to your doctor. My brother-in-law was recently diagnosed with congestive heart failure at the age of 29 and he continues to smoke despite the fact that it causes difficulty breathing. It is very depressing because I have seen what happens to people who don't eliminate the risk factors after diagnosis.

Victor Whitmore, October 14, 2004 - Hello all, Just a short background of information: I was taking care of my mother, my ex-wife, and working 14 to 18 hours a day. Medically, I was in the middle of torn right shoulder ligaments - separated rotator cuff. I was scheduled for a second operation after the first of the year to get through the holidays. Multiple serious back and neck issues that doctors did not want to go to. Then it happened on a cold December day while placing Christmas lights up for my mother, the widowmaker reared its ugly head and my life changed on the 18th day of December 2003.
     Now, 9 months later with no income, I have lost my career, I have lost my home, and bills are out of sight. I can't file bankrupcy, that was done 6 months before this big change. With all the conditions the doctors have disabled me, but not according to VA, SSA and 2 long-term disability insurances. All have placed a denial. Now lawyers are involved. So the shrinks have deemed me as a candidate to just give up permanently.
     Are you kidding me - no way, I have too much left to do in this life. I get up every day knowing it's not going to be a normal day. It's going to be an adventure with a lot of naps, and taking the time to enjoy doing the things I love. Get out on the porch in the mornings and enjoy a cup of coffee and watch a new day being born. Now you have time to enjoy life in the best possible way, taking the time! My web site is with poems. You can e-mail me from there. Changing your life is what makes the adventure great.

Carla's October 15 reply to Quentin's October 14, 2004 - Hey Quentin, I will tell you that I was diagnosed in January of this year with an EF of 25% and have yet to see any improvement in my heart function. However, I feel great. I still work full-time and have never been told any differently. I can't imagine not working at this point as I'm sure I would lose my mind. I'm very lucky to work for a very supportive company that seems to understand a lot of what I'm going through.
     I know what you mean about those certain days when you can't fathom getting out of bed and facing the world - but once you get up and do it, it gets easier. I have found myself forcing myself to look around me, at the people who are so much worse off than I am. We can still walk, talk, hear, smell, and see. Even though we take tons of pills each day, it's not really that bad. Please hang in there since I feel that total disability would bring you farther down mentally.

Chuck F's October 15 reply to Quentin's October 14, 2004 - Hi Quentin, I am in your shoes as well, with heart failure, an ICD, 2 separate aneurysms from 2 prior heart attacks, and I am a veteran of 13+ years. Fortunately my VA benefits finally came through. Be patient as well as respectful with both the VA and Disability.
     As far as work goes, that is entirely up to how you feel. If you are able to take a one hour lunch, take a speed nap at lunch. With heart failure you do not want to overexert or you will greatly resent it. I am speaking from experience as a nurse. I worked too long instead of cutting back and now I can't work at all and must watch my wife do the man's job. Good luck and God speed.

Diana, October 15, 2004 - Hi, I have heart failure. It came on quickly. I thought I was having trouble with my allergies, having a hard time breathing and not able to breathe when lying down at night. I am age 46 and was healthy. I started to take Vioxx 2 to 3 weeks before my symptoms, and I was just wondering if anyone has had or know of anyone that this has happened to?

Jean, October 15, 2004 - Hello, There is a disagreement between my cardiologist and surgeon regarding my need for mitral valve repair. I am age 78. I have heart failure and severe mitral valve regurgitation with an ejection fraction of less than 20%. The cardiologist believes that meds will help reduce the regurgitation problem. The surgeon believes a mitral valve repair will work better.
     I'd like to know if anyone with my same left ventricle and mitral valve problem has decided to do the surgery. What was the outcome? Would you make the same decision to having surgery again? Why or why not?
     The American College of Cardiology currently suggests surgery for an ejection fraction no lower than 30% but one surgeon that I spoke to said the College is going to change that standard to no lower than 20%. Is that currently being practiced?

Katherine H's October 15 reply to Keith's October 13, 2004 - Hi Keith, I have had a biventricular pacer for 25 months now and it has made a huge difference for me. I went from a 30% ejection fraction and low quality of life to 45% EF and at times I almost feel normal again. I can't say enough for how much it has helped me.
     Daily it's no big deal. I don't even think about it most of the time except when I lie down. I have to lie on my right side or the third lead kids my phrenic nerve and that causes a strange feeling but that is very unusual. I know for some this device hasn't worked and they don't feel better - so be sure you qualify on all 3 counts: Low ejection fraction, heart class 3 or 4, and long QRS.
     Good luck and e-mail me if you have specific questions. Katherine.

Keith, October 15, 2004 - Hello, Back in Februrary I heard about a product containing 1200mg of EPA, 900mg DHA and OMega-3 oils to lower cholesterol. A few years ago I was on some statins which had devastating side effects and had no effect on my lipids. I had second thoughts about purchasing this product but I did. My recent lipid panel results were: Triglycerides 81, Total cholesterol 116, HDL 45, LDL 55. When I was first diagnosed with CHF in 1999, my triglycerides were off the chart at 1400 and my cholesterol was over 260 but I don't remember what my HDL or LDL were. My heart failure doc at Loma Linda Heart Institute was very happy last week before my pre-biventricular cath, which found only the bundle branch blockage. I had a heart attack in 1981 and angioplasty in 1986.

Marty's October 15 reply to Victor's October 14, 2004 - Hello Victor, Thanks for a refreshing and encouraging post. Your attitude flies in the face of this illness, and I have been trying to live exactly as you describe. As I read from one other eloquent poster recently, we all suffer from the same human condition - we are born, we live for awhile, and we die - all of us. One hundred years from now is really not that far away, yet almost none of the people we know right now will be around then. We have to cherish each day we do have, and think about how we live, not how we'll all eventually die.
     This is easier said than done, especially with all the symptoms that won't leave us alone, but still the truth. Our enemy is often fear. Fear can nearly blind us, stealing the colors of our lives, turning everything gray and scary, pointing our focus inward. The antidote for fear is love, which casts out fear! When we get focused on actively loving life, and finding new ways to love the people we're each blessed to have in our lives, fear shrinks back.
     I'm sorry to ramble, I just wanted to share this simple truth since Victor reminded me of it, and I keep discovering it for myself. I know there are so many dear people here who are fighting fear and desperation every day. God bless you all, and never forget that you're not the only one. Marty C.

Rick Benfield, October 15, 2004 - Hello everyone, This is my first post to this site. I am very pleased to have found this site. I am a 44 year old male and have had heart failure for about 3 years now. When I was fist diagnosed I was in denial for a very long time. I have great faith in God and have had a very rocky road. The last year I have been in the hospital evey month. Last year they installed a biventricular pacer with an ICD. My ejection fraction came back up to around 45%.
     My cardiologist was very good in the beginning and sent me to the right places, including Ohio State University for the pacer. I had to fire him last month because he became too busy to take care of me and listen to me - he started blowing me off. I am with a doctor very well known in this area with his work with CHF. I am going through the ringer again for a heart transplant at the University of Cincinnati. My ejection fraction has dropped to under 20% and he is suggesting heart transplant.
     My wife works as a nurse to provide our medical coverage for prescriptions and I just became eligible for Medicare the first of October. I can't believe the hassles you have to go through with the insurance. When I was first diagnosed I was in denial for a long time, and I thought this would pass and I would be fine. Now that my ejection fraction has dropped back down and the only option is heart transplant I am very aware of my illness, and am also scared about the thought of a transplant.
     Well, it's nice joining the board. See y'all around. Thanks, Rick B.

Venita, October 15, 2004 - Hi, I am a student completing a bachelor's program and nursing. My question to all of you is what things have benefited you from this support group? Are there other support groups out there similiar to this one that you participate in?
Jon's note: Please reply only by e-mail to this person's request. Thanks.

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.

Talk to Jon Site Index