The paperwork never ends The Archives
October 16-31, 2002 Archive Index CHFpatients.com

Ruthie A's 10-16 reply to Rick M's 10-15     mental alertness and memory with CHF
 
Tom S' 10-16 reply to Phil's 10-15     health insurance and mental alertness
 
Jon's 10-16 reply to Tom S' 10-16     health insurance and mental alertness
 
Ted 10-16     seeking cancer patient resources
 
Catherine L's 10-16 reply to Mel G's 10-14     coping, finding understanding & more
 
Hal's 10-16 reply to Ruthie A's 10-16     mental alertness and memory with CHF
 
Pat Y 10-17     religion and web site
 
Elaine WB 10-17     mental alertness and memory problems
 
Jon's 10-17 reply to Elaine WB's 10-17     mental alertness and memory problems
 
Katherine H 10-17     pacing news article
 
Russell 10-17     seek cheaper source for meds
 
Vicki's 10-17 reply to Catherine's 10-16     my experience
 
Tom S' 10-17 reply to Pat Y's 10-17     doctors, web site, and religion
 
Sharon P 10-18     memory loss can be funny
 
Clara D's 10-18 reply to Carl G's 10-10     I would like to hear more
 
Phil's 10-18 reply to Tom S' 10-17     religion, faith and illness
 
Linda Z 10-18     religion, Jesus, and this board
 
Jon's 10--18 reply to Linda Z's 10-18     can you be specific, please?
 
Don C's 10-18 reply to Linda Z's 10-18     everyone is welcome here
 
Jack D's 10-18 reply to Linda Z's 10-18     that dawgonned religion is everywhere
 
Scott Brown 10-18     memory loss possibility
 
Sherishe S 10-18     anyone on Coumadin or low meds doses? & more
 
Eddie V's 10-18 reply to Linda Z's 10-18     help is help & more
 
Natalie R's 10-18 reply to Linda Z's 10-18     look at it in other ways & more
 
Myrtle C 10-18     CoQ10 questions
 
Jon's 10-18 reply to Myrtle C's 10-18     taking CoQ10
 
Amelia's 10-18 reply to Linda Z's 10-18     this site, religion, helping each other
 
Myrtle C 10-18     memory lapses can be funny & more
 
Clara D's 10-19 reply to Myrtle C's 10-18     CoQ10 experience, cost & more
 
Vicki Stevens' 10-19 reply to Sharon P's 10-18     memory being a funny thing
 
Joe S' 10-19 reply to Scott Brown's 10-18     memory, life style, anxiety & more
 
Patricia's 10-19 reply to Ruthie As 10-16     update, memory, being over medicated
 
June 10-19     can I be well now?
 
Amelia 10-19     memory loss with heart failure
 
Cat 10-19     seek others with kidney dysfunction
 
Jacky 10-19     please explain EKG results like LBBB
 
Jacky 10-19     please explain left atrial enlargement
 
Catherine 10-19     I really benefit from this board
 
Lori K's 10-19 reply to Jon's 10-15     Xanax having benefit in CHF
 
Jon's 10-19 reply to Lori K's 10-19     Xanax having benefit in CHF
 
Gail 10-21     I think it's worry and stress
 
Annette 10-21     seeking help
 
Tom S' 10-21 reply to Cat's 10-19     kidney problems
 
Staci H's 10-21 reply to Amelia's 10-19     pets, Alzheimer's questions
 
Jon's 10-21 reply to Staci H's 10-21     pets, Alzheimer's
 
Ruthie A 10-21     illness, God & life - update
 
Jacky 10-21     is atrial enlargement something to worry about?
 
Thelma 10-21     anyone else have pulmonary hytpertension?
 
Hal 10-21     anyone get treatment in other countries?
 
Chuck H's 10-21 reply to Mrytle C's 10-18     CoQ10 sources for less money
 
Karen K's 10-22 reply to Ruthie A's 10-21     life goals after illness strikes
 
Vee 10-22     I am sure Coreg causes memory and mental slowness
 
Aubrey 10-22     can CoQ10 raise blood pressure?
 
Joseph P's 10-22 reply to Anne's 10-21     COBRA benefit period
 
Jon 10-22     COBRA coverage
 
Ruthie A 10-22     memory loss and mental slow-down
 
Joe S' 10-22 reply to Staci H's 10-21     pets and not worrying
 
George S' 10-22 reply to Thelma's 10-21     doctors, blood test for CHF
 
David B 10-22     second opinion update, warning
 
Karen K's 10-22 reply to Joe S' 10-22     trained dogs for chronically ill people
 
Cristina L 10-22     memory problems, sleeping habits & fatigue
 
Natalie K's 10-22 reply to Ruthie A's 10-21     smelling the roses and more
 
Joseph P 10-23     memory loss ain't all - impotence
 
Ben B's 10-23 reply to Joseph P's 10-23     impotence
 
Gene 10-23     seek other's arrhythmia experience
 
Jon's 10-23 reply to Gene's 10-23     arrhythmias should be identified
 
Russell 10-23     does anyone order meds mail-order?
 
Tom S' 10-23 reply to Joseph P's 10-23     money and memory
 
Jennifer 10-23     seek CHFers who had a knee replaced
 
Dee L 10-24     inotropes questions
 
Jon's 10-24 reply to Dee L's 10-24     inotropes
 
Jon 10-24     seek sources of medical help
 
Sharon W 10-24     got my Disability & more
 
Sharon W 10-24     seek heart transplant info
 
Jon's 10-24 reply to Sharon W's 10-24     heart transplant info
 
Sherishe S' 10-24 reply to Cristina L's 10-22     thyroid & sleep & energy, drug question
 
Jon's 10-24 reply to Sherishe S' 10-24     over the counter drugs
 
Mike H 10-24     can albuterol contribute to getting CHF?
 
Cindy 10-24     what about neck IVs for MUGA?
 
Jon's 10-24 reply to Cindy's 10-24     MUGA & IV lines
 
Tom S' 10-24 reply to Jon's 10-24     coping with CHF and much more
 
Amelia 10-24     fluid buildup questions
 
Craig B's 10-24 reply to Ben B's 10-24     impotence
 
Joe W's 10-24 reply to Jon's 10-24     VA care & more
 
Sherishe S' 10-25 reply to Jon's 10-24     getting thyroid function tested & more
 
John 10-25     I like this site
 
Ben B's 10-25 reply to Craig B's 10-24     I agree with you
 
Tim H's 10-25 reply to Mike H's 10-24     intro, albuterol experience & more
 
Craig B 10-25     seek more eplerenone info
 
Tom S' 10-25 reply to Craig B's 10-24     factors relating to sex, impotence
 
Jon P 10-25     VA assistance & more
 
Katherine H 10-25     what over the counter medicines can I take?
 
Cat's 10-25 reply to Mike H's 10-24     albuterol and CHF
 
Richard M's 10-25 reply to Jon P's 10-25     getting both VA and SS Disability
 
Cat 10-25     does anyone get abrupt stomach distention?
 
Amelia's 10-25 reply to Tim's 10-25     getting copies of x-rays and reports
 
Tom S' 10-25 reply to Jon P's 10-25     getting more care, benefits & more
 
Jon's 10-25 reply to Jon P's 10-24     benefits
 
Mel G's 10-25 reply to Katherine H's 10-25     cold and flu symptoms
 
Marsha H's 10-25 reply to Tom S' 10-24     uncertain prognoses
 
Jon P's 10-26 reply to Jon's 10-25     VA and Social Security benefits
 
Craig B's 10-26 reply to Ben B's 10-25     impotence
 
Tom S' 10-26 reply to Marsha H's 10-25     thanks for great saying
 
Joe S 10-26     Bean-O drops helped me
 
Richard M's 10-26 reply to Jon P's 10-25     type of benefits matters
 
Staci H's 10-26 reply to Joe S' 10-22     dogs and more
 
John Len 10-28     diabetic - seek others' experiences & ideas
 
Gail's 10-28 reply to Cat's 10-25     abdominal edema experience
 
Myrtle C's 10-28 reply to Joe S' 10-26     intolerances versus allergies & more
 
Jon 10-28     page updates and albuterol
 
Hal 10-29     have CoQ10 questions, attitude slipping
 
Judi C 10-29     cats and dogs
 
Jon's 10-29 reply to Judi C's 10-29     owning a dog
 
Rieale 10-29     beating the odds
 
Joanne R 10-29     potassium & sea salt questions
 
Jon's 10-29 reply to Joanne R's 10-29     potassium intake and sea salt
 
Steve Bauer 10-29     seek suggestions and advice
 
Norma's 10-29 reply to Hal's 10-29     CoQ10 and alternative therapies
 
Tom S' 10-29 reply to Joanne R's 10-29     salt
 
Clara D's 10-29 reply to Judi C's 10-29     like your philosophy, pets
 
Clara D's 10-30 reply to Norma's 10-29     how much do you take?
 
Kathy H 10-30     where to learn about reading EKGs?
 
Scott Brown's 10-30 reply to Hal's 10-29     opinion on CoQ10
 
Jon's 10-30 reply to Scott Brown's 10-30     opinion on CoQ10
 
Jim B 10-30     great news!
 
Jon's 10-30 reply to Kathy H's 10-30     EKG sites
 
Dee J L 10-30     heart attacks, docs, CoQ10 & more
 
Norma's 10-30 reply to Clara D's10-30     CoQ10 and L-Carnitine
 
Norma's 10-30 reply to Scott Brown's10-30     supplements and prescription meds
 
Mel G's 10-30 reply to Kathy H's 10-30     ECG (EKG) resources
 
Mel G's 10-30 reply to Jon's 10-30     CoQ10 and more
 
Ben B 10-30     some Social Security Disability questions
 
Jean 10-31     off meds, have fast heart rate
 
Jon's 10-31 reply to Jean's 10-31     this is not good at all
 
Craig B's 10-31 reply to Ben B's 10-30     disability issues
 
Jacky 10-31     CHF specialist is much better
 
Giorg 10-31     my opinion on CoQ10
 
Jim B 10-31     source for supplements & more
 
Jon's 10-31 reply to Ben B's 10-30     SSD
 
Jon's 10-31 reply to Craig B's 10-25     eplerenone
 


Ruthie A's October 16 reply to Rick M's October 15, 2002 - Hi Rick, I was just wondering about you. I couldn't get you out of my mind and wondered if you were still kicking or had kicked the bucket! I'm glad to see you are still kicking.
     Regarding the memory thing, you are one of the blessed ones. I was just starting graduate school when I was diagnosed with CHF. My GPA was 3.85 but once I started all the drugs I take and kept struggling with SOB, it became more and more difficult to retain what I was learning. Eventually I had to drop out of school because it was taking me too long to complete assignments, and we won't even discuss how poorly I was doing on my tests.
     I think some of us have less effective blood/brain barriers, allowing drugs to affect our brains more easily than other people. Also, some of us may have had more difficulty getting enough oxygen to the brain, causing a starvation effect in the cells. All of that meaning that some of us don't think as well as we used to think. I struggle not only with short-term memory loss, but with basic self expression. There are days when I simply cannot get the words out. They are there, but getting them from my brain to my mouth can be close to impossible. Count your blessings, my friend. You are rich indeed. Ruthie A. rlaba51@yahoo.com


Tom S' October 16 reply to Phil's October 15, 2002 - Hi, Insurance debate? Hmmm, it seems that insurance is a vital part of coping with CHF, or any disease or health matter, so I think it has a place on this forum as much as a discussion on memory loss. Now about memory loss, let me see, hmmmm,..., what was I going to say? bigheart@muchomail.com


Jon's October 16 reply to Tom S' October 16, 2002 - Hi Tom, Actually, the two discussions really are directly related: How can someone with reduced mental alertness possibly cope with the incredible complexity of current-day health insurance requirements? <g> Jon.


Ted, October 16, 2002 - Hello, Does anyone know a place as good as this one for cancer patients? My wife has CHF from chemotherapy she was given 6 years ago and again the same drug 2 years ago. I have been trying to get her on this message board but no luck yet. Thanks, Ted. cancer@northtech.net


Catherine L's October 16 reply to Mel G's October 14, 2002 - Hi Mel, Your post sure summed up my feelings, like, all over the map! It's comforting to know so many of you know what I'm going through. My mom has memory problems and every time I call her I have to tell her everything all over again, which is hard on me. My sisters are too busy and not able to be there emotionally for me. One asked me to write my memoirs. I couldn't believe her request. The other is afraid she'll catch what I have, I think. I've not heard from her for 11 days. We have no kids and I'm not working (recently lost my job) so being home alone all day has been hard but my husband has been wonderful, thank heavens. Thank you for replying. I think I'm slowly adjusting, but it's taking awhile. Thanks to everyone who replied, Catherine. ccash@kcnet.com


Hal's October 16 reply to Ruthie A's October 16, 2002 - Hi, I too am experiencing those "blank" lapses. My mind used to do that when it was stressed and tired, but now it does it just for the fun of it. The good part is that every now and then it will engage quite nicely and I can still be witty and eloquent as ever! Wishing you well. uncahal@webtv.net


Pat Y, October 17, 2002 - Hi, Every once in awhile I go back into various parts of this web site. I check the Beat Goes On every day. In the spirituality area I found this comment, "Recently some doctors have hinted that there is too much 'religion' on this web site for them to be associated with it." I have found this site to be a great source of information that I have been unable to find anywhere else. If some doctors feel there is too much "religion" they don't have to bring up this site on their computer. I personally feel this site is invaluable to those of us with CHF. God has been, and will continue to be, a part of my life. Without Him, I would not be able to cope with this chronic illness. So Jon, keep up the good work! PTYoumans@aol.com


Elaine WB, October 17, 2002 - Hi, After reading the posts regarding memory loss and concentration, I feel somewhat relieved to know that it's not just me! I am having a horrible time with short-term memory loss. I can recall early childhood memories and my teen years, but what I did 10 minutes ago when I left the kitchen to go to the other end of the house to get something, is my biggy!
     I really have to struggle to concentrate when I read something. Newspaper seems to be okay, but a book or manual of some kind really frustrates me. I am on 50mg Coreg daily, but I really had not thought about it being that. I had a stroke September 4, 2001, and I have been blaming it on that and so has the doctor. I will be asking about this when I see him again.
     I am starting a part-time job this coming week and will see if I am able to hold my own. I am excited about getting out and about every day, hoping that keeping myself busy with mental as well as physical things will help. Since the memory thing has bugged me, I make myself work the crossword puzzle in the daily paper, using the dictionary and inputting as much as I can to the brain, hoping that will help. I would like to return to college in January and complete my studies for Diabetic Education and Nutrition Counseling. Here's hoping it all comes together.
     Take care, everyone. It's wonderful to have this connection! Thanks, Jon. bewblack1946@hotmail.com


Jon's October 17 reply to Elaine WB's October 17, 2002 - Hi Elaine, I know what you mean. This is so common I put it in The Manual. I will put a post on this page and then scroll up to place a link at the top of the page to it. By the time I get to the top of the page, I have forgotten the name of the poster! I don't think it's from lack of mental exercise, considering the new and often complex things I must try to learn every day to run this site and answer people's questions.
     I seriously thought it was from Coreg but ran an experiment with my CHF doc. We lowered my dose slowly from 50mg twice a day to only 6.25mg twice a day, and kept it there for half a year or so. It made no difference at all. We also stopped my cholesterol-lowering drug (a statin) since that can affect mental ability. That didn't matter in my case either. Bummer.
     I get a decent amount of structured exercise for someone in my situation, too. I now wonder if it's inherent in CHF or may come as much from sleep deprivation as anything else. Who knows? It sure is frustrating though. Jon.


Katherine H, October 17, 2002 - Hi, For news about Medtronic's CHF pacing, try www.medtronic.com/, click on "Newsroom" and then click on the article entitled, "Emerging Evidence of Reverse Heart Remodeling Gives Further Hope to Heart Failure Patients Whose Hearts Labor to Provide Adequate Pumping Power" which is dated 9/23/02. Katherine. kholian@msn.com


Russell, October 17, 2002 - Hi, Has anyone found online or some other source of meds besides the neighborhood store? I am hoping to cut down on the cost if possible. Russell. rgetz@rbhs.w-cook.k.12il.us


Vicki's October 17 reply to Catherine's October 17, 2002 - Hi, My ejection fraction at diagnosis was 40%. A year and a half later, it was 65% so I went off Coreg and digoxin and stayed on Zestril. Within 5 weeks after getting off the meds my EF dropped to 48% from 65%. Needless to say, I am back on Coreg and digoxin as well as continuing my Zestril. I learned my lesson. I will be on these meds the rest of my life according to my cardiologist. It is good to know that they are doing their job. Even the cardiologist was shocked at the difference in my echocardiogram. He said that in addition to my EF dropping so much, there were many other subtle differences and that Coreg is necessary for me. It still amazes me that this could happen in a 5 week span of time.
     Regarding your low blood pressure and taking antidepressants, when I went on Celexa, my blood pressure was so low I was hardly functioning. I was at the maximum dosage of Coreg for my weight at 25mg 2 times a day, Zestril at 10mg and was taking digoxin at 0.25mg. My internist checked my blood pressure at the time he gave me the prescription for Celexa and it was 88/40. He was shocked that my cardiologist was allowing it to get that low. He prescribed me the Celexa with my cardiologist's approval and dropped my Zestril to 5mg per day. It took about 2 weeks for the Celexa to kick in but once it started working I felt like a new woman. I think my depression resulted from the shock of finding out I had heart disease. I also teach school (5th grade) and that is a very stressful job. The events of September 11 factored in as well. That news really affected me.
     On a more positive note, I just had my first grandchild in July and she is the light of my life. Believe me, seeing that little girl at birth gave my life a whole new meaning! Fortunately, she lives in the same town I do (Destin, Florida) so I see her every day. This year I am job-sharing my teaching position so I only work 2 1/2 days a week. Because of the insomnia, it is difficult to work a 40-hour week so this job-sharing thing has been a blessing to me.
     The side effects of the heart meds bother me, mostly the insomnia and short-term memory loss. My mind just doesn't perform as sharply but that is something I just have to deal with. The alternative would be far worse.
     My advice would be to look into taking an antidepressant and to take your heart meds forever without fail. Keep in touch. I am scheduled for another echocardiogram the first week in December. Hopefully, things will have improved. It will be interesting to see. May God bless you. My faith keeps me going. I am so thankful that we have the technology to diagnose such subtle changes. The Lord is good!
     Thank you Jon, for this fabulous site. It has been a source of invaluable info and heartfelt encouragement over the course of the last year and a half, Vicki. Snevetsii@aol.com


Tom S' October 17 reply to Pat Y's October 17, 2002 - Hi, Religion on this web site? Heavens, no! I've seen a few praise the Lord's and a couple of other innocuous comments but religion, naw, never! By the way, it is strange to note that I have heard rumblings from the medical community themselves that a belief in God and prayer is more powerful in the healing process of a patient than they ever previously realized. I would also suspect that more than a few of those same doctors prayed pretty hard to either get into medical school or get through it once they were in it. Sounds like a real conundrum to me. bigheart@muchomail.com


Sharon P, October 18, 2002 - Hi, Memory loss is a funny thing, and it has me laughing right now. Ten years ago we remodeled our kitchen and I moved the plastic wrap from the pantry to a drawer. Suddenly this week I have been returning to the pantry looking for plastic wrap, which appears to be missing. Blessings, Sharon P. sparker103@cox.net


Clara D's October 18 reply to Carl G's October 10, 2002 - Hi Carl, I read your story on the caregivers' forum and would like to know more. What other supplements do you take and how did you arrive at the dose of CoQ10 you now take, what dose did you start at, etc,...? I would also like to know just what you mean by "heart-health program and drastic life style change." Also, what other meds are you on and what symptoms have you had and which do you have now?
     As someone who has had idiopathic dilated cardiomyopathy and a very low EF for the last year, I find the fact that you have been coping successfully (hey, you're alive!) with the same condition for the past 10 years very encouraging. I would really like to know more about what you're doing to achieve that. Thanks for any information you're willing to share with us. Thank you Jon, for making this site available. Clara D. ncdossetts@aol.com


Phil's October 18 reply to Tom S' October 17, 2002 - Hi, I agree Tom. When I interviewed for the transplant program at UCLA a couple of years ago, all the doctors and surgeons I spoke with were interested in my relationship with God and the strength of my faith. They spoke as though faith was an important factor in transplant success. I agree. pgwal64810@aol.com


Linda Z, October 18, 2002 - Hi, I think the point of religion on this board is slightly different, not so much that there is too much religion, just perhaps too much Christian religion. There are a lot of us in the world that rely on God and prayers without invoking the name of Jesus. Perhaps if the religion here was more generic and in some ways accepting that there are many that find religious support and help in non-Christian ways this wouldn't be a complaint from anyone. Jesus is not my personal saviour or a place where I find support or strength, but that doesn't mean I am not religious, my religion is just different. It sometimes makes me feel very uncomfortable and unwelcome here. Just an opinion. zame@earthlink.net


Jon's October 18 reply to Linda Z's October 18, 2002 - Hi Linda, What has been said to make you feel unwelcome - not uncomfortable but unwelcome - here? Please be specific. Thanks, Jon.


Don C's October 18 reply to Linda Z's October 18, 2002 - Hi Linda, I am sorry you feel uncomfortable and unwelcome here. I understand and will fight to protect the ability for many people to practice their faith in different ways. I will also stand beside you and protect your right to believe, even if your beliefs are different than mine. However, I will not change my beliefs because someone else is uncomfortable. John Lennon once said that any love is good and I believe that. George Carlin said that if you don't like what's being said, turn it off. I believe that too.
     If you feel uncomfortable because you think this site is too Christian, I am willing to accept you for who you are. Please do the same for me as a Christian. If you feel unwelcome, I am sorry. Everyone is welcome here. pine32@pacbell.net


Jack D's October 18 reply to Linda Z's October 18, 2002 - Yep, I understand perfectly, Linda. I was reading a magazine the other day and as I was flipping the pages, I saw an article about Allah and it made me feel very uncomfortable and unwelcome. There was nothing I could do! I know there were other articles in the magazine that I could read, but just knowing there was an article about Allah in there completely ruined my day.
     I finally had to sell my TV set because there were religious programs on it. I can't understand why the networks couldn't just tone them down or get rid of them; but no, they wouldn't do it and now I have to miss all my favorite programs because my TV was corrupted by religion that I didn't design. I was no longer welcome in my own living room! maddjak@hotmail.com


Scott Brown, October 18, 2002 - Hi Folks, I have a very mentally demanding job and I have always found concentration difficult. My job demands that I juggle a million things, so somehow I have developed ways to cope: lots of datebooks, calendars and good notes.
     I have no doubt that memory problems can be caused by many things like lack of oxygen to the brain and medications. However, I really wonder if the main culprit in the memory loss is the amount of emotional strain we are all constantly under due to our illness. For example, I try not to sweat the little things in life. I care more about enjoying the quality of life I still have left. While I am ignoring the "details," I am also not paying attention to the details. Whenever you don't pay much attention to things it is much easier to forget.
     Maybe I am way off base but there is not a day that goes by, good or bad, where I forget that I have this lousy illness. Maybe our minds are just a little preoccupied with more important thoughts about our own survival? Just a thought, Scott. kitchenerguy@hotmail.com


Sherishe S, October 18, 2002 - Hey all, I went to a second cardio doc last week and wasn't thrilled with her either. Then I went to a pulmonologist who says that my mild respiratory failure is probably due to my heart failure and not PPH. I was happy that I don't have have to see him on a regular basis. I think I have been spoiled by my endocrinologist, who is warm and listens, really listens, to me. When he is out of the office a different doc returns my calls. They always return my calls the same day. I wish he could be my doc for everything!
     After I saw the second cardio doc I was a little depressed because I didn't think she and I made a good match. So I went to my endo doc's office in the same building just to see if he could give me an objective opinion. It was the end of the day and he spent 20 to 30 minutes speaking to me without an appointment! He told me that I must find a cardio doc I am comfortable with and who sees me as a whole person and not just a chart. I know that everyone here, especially Jon, would concur. I just find it depressing to keep going to these doc appointments.
     Okay, I know that no one here is a doc but many of you have more experience than me with this, so is anyone on Coumadin? My EF is approximately 40% and the new cardio doc wants to put me back on Coumadin. I was on it for 6 months because at diagnosis I also had a deep vein thrombosis and possible but unconfirmed pulmonary embolism. However, I have been off of it since September. I don't want to take it. The original cardio doc put me on 325mg aspirin per day instead.
     Also, I have read about the target doses of meds and I am still on very low doses. I am on 5mg Altace once per day and 3.125mg Coreg twice a day. My blood pressure is 100/60 and my heart rate is in the upper 50s to lower 60s. I am told that my blood pressure and heart rate are already low and increasing the doses may make them even lower and cause me to not feel well. Is anyone else on such low doses and is it still effective? I did stop taking them for about 3 weeks in September and my blood pressure increased to 110 over 80 and my heart rate to 70 to 80. So I know that they are working. Thanks to you all for your continued support, Sherishe S. Smarrfive@wmconnect.com


Eddie V's October 18 reply to Linda Z's October 18, 2002 - Hi Linda, I have lurked on this site for several months. I also am not comfortable with someone attempting to change my religious beliefs. However, if my house was on fire I don't think I would inquire what religion the firefighters were. If your personal religion is strong enough, you need have no fear accepting help from others who worship differently. The medical professionals who over the years have worked so hard to prolong my life have been Muslim, Christian, Jewish, Hindu and non-believers. Take help where you can find it. Goodness comes through many guises. edvoss@web-access.net


Natalie R's October 18 reply to Linda Z's October 18, 2002 - Hi, I think you're overreacting. I don't thnk the spiritual side is at all pushy at this site. If someone mentions leaning on his or her spiritual side to cope, I consider it education, not evangelism. I can absorb, adapt, or ignore the lesson. Ease up! mcant@yahoo.com


Myrtle C, October 18, 2002 - Hi Jon, I am considering going on CoQ10. I have read your page on Nutrient Stew (I think that is the name). I have no idea how much to take and if from what I read, it is a good idea to try it. The price seems so outrageous that I can't help but feel that it is being touted for all sorts of things for the profit. Thanks for your info, Myrtle Clark. omie@axs4u.net


Jon's October 18 reply to Myrtle C's October 18, 2002 - Hi Myrtle, I agree that CoQ10's price is outrageous. That's one reason I don't take it anymore. My wife still takes it, though. If you take a cholesterol-lowering drug in the "statin" class - like Zocor - I suggest that you take CoQ10. Statin drugs lower your body's level of CoQ10.
     I suggest you start at 30mg once a day and work your way up to one mg to 2 mg per pound of body weight. So if you weigh 150 pounds, you would take 150 mg to 300 mg of CoQ10. Some people say to take at least 300 mg daily regardless of body weight. Others say 100 mg daily is enough. Trials have used all these doses and more.
     Always take CoQ10 with food. Once you get past 60 mg a day or so, split it into 2 or 3 smaller doses through the day, with meals - to add up to your total daily dose. Studies show that CoQ10 in a soft gelatin capsule is absorbed better than "solid" tablets. However, if you take the solid tablets with something like a teaspoon of No Salt Added peanut butter (high fat food) and chew the tablets up, you'll do just fine and it's cheaper that way.
     The worse your CHF is, the more likely CoQ10 is to benefit your heart. However, never spend money on CoQ10 that you need to pay for prescription heart meds or food or anything; It may well help you but it is not a cure. Taurine may be a better choice if your funds are really limited. It is quite cheap and taking 1000 mg 3 times a day may help.
     Off-topic, a small trial recently showed that CoQ10 drastically slows down Parkinson's disease. Jon.


Amelia's October 18 reply to Linda Z's October 18, 2002 - Hi, It's too bad that we sick hearts can't express how we feel about religion helping us cope and have hope without disturbig people. I don't understand how reading how others feel about religion can make one feel uncomfortable and unwelcome. This site and my religion (being a Christian) sure are helping me and by the same token I respect those with other affiliations. Let's get back to basics and CHF, and help one another get through each day with experiences, advice, hope and yes religion, if you so choose. Good health to all. amelias@erols.com


Myrtle C, October 18, 2002 - Hi, I agree with Sharon P about our memory lapses being humorous sometimes. Being 65, I blame it on "senior moments." My husband is worse then I am and has no CHF. I now understand my mother. I could never understand how she could be so absent-minded, as it used to be called. Now my daughter at 45 is saying she has it. Maybe it is the water or the smog, or the IRS? <g> Omie of 3 (that is grandmother of 3 grandkids) omie@axs4u.net


Clara D's October 19 reply to Myrtle C's October 18, 2002 - Hi Myrtle, I use CoQ10 and buy mine at Costco for less than $15 (sometimes as little as $10 when it's on sale) for 90 softgels, 50 mg each. That's a month's supply for me and is a lot cheaper than I've seen it elsewhere. The brand name is TruNature. Wanting to be sure I was getting the "real thing" I wrote the distributor, Leiner Health Products, about their source. The CoQ10 they use comes from Japan and the source is Yeast Cream, which they said is the suspension of yeast cells. They said the CoQ10 is obtained through a microbial fermentation process. From what I've read, the "real thing" is currently manufactured only in Japan, so hopefully this is it.
     If you're sensitive to new meds, start slowly. I actually cut the gel caps in half and took only one-half each day for awhile, then began taking one-half twice a day. The distributor said it was okay to cut the gel caps. Of course, you could always buy softgels with fewer mgs per softgel but that would be more expensive. Some people may have side effects. My friend took CoQ10 for high blood pressure and it worked, but she got headaches. Starting slowly as I did, I never experienced any side effects. It took me 4 months to work up to my current dose of 50 mg three times per day - the dose my cardiologist said is right for me.
     I always take it after eating some food containing fat. That's supposed to help you absorb it better. Also, it's supposed to be better to take multiple doses during the day rather than a larger single dose. I've been taking CoQ10 since January and seem to have more energy. During that time I've experienced no CHF symptoms except for occasional minor fatigue. Maybe the CoQ10 has helped, maybe it's just a coincidence, but since I couldn't tolerate ACE inhibitors or the first ARB I tried, I didn't think I had anything to lose by trying CoQ10.
     I've also been on Diovan now for a month with no side effects; again I think because I insisted on starting with very small doses and working up slowly to my current dose of 80mg. My body seems to take awhile to get used to new meds. Good luck, Clara D. ncdossetts@aol.com


Vicki Stevens' October 19 reply to Sharon P's October 18, 2002 - Hi, Your post on October 18 about memory being a funny thing made me howl with laughter. ;-) You couldn't have said it better and I identify completely. What a way to live! Vicki. snevetsii@aol.com


Joe S' October 19 reply to Scott Brown's October 18, 2002 - Hi, I was going to write a very intelligent note to you, but before I entered my name and address, I forgot what I was going to say. Okay, now I remember. I think you are right on about our making things stressful. I had a very stressful hi-tech sales job for years, and every time I went to a doc he told me I was having anxiety attacks. Of course no one ever thought that all the sweating and hyperness could have anything to do with my heart, and naturally the swelling of my ankles was just gout.
     Now after having my aortic valve fixed, my memory is horrible, but being a salesman I have found I can use it and make it sort of funny, so forgetfulness can be funny like Sharon said. It's also great 'cause I can watch movies and read books again. Actually that doctor who told me I was anxious all the time was right in a lot of ways. I chose my profession because in a way I loved anxiety. It made my stoic personality light up a lot. I am learning to change but being an old man isn't making it very easy. Joe S. jes@gbis.com


Patricia's October 19 reply to Ruthie A's October 16, 2002 - Hi there, My, it has been months since I've been here. I had a major computer crash and we are just now getting it back up and running. I just now got back onto the site and checked in. I had to laugh when I saw the topic of discussion. Oh wow, have I been having my problems with my memory?!
     It has been so long ago that I posted but to bring you up to date, I had a triple bypass, then the next year was diagnosed with CHF. That was in 1998. I moved to Texas last year from Indiana. After moving here, I was diagnosed with beginning stages of Parkinson's! My neurologist put me on Topamax. She started me with 25mg and I had instructions to increase it every 2 weeks by 25mg. I worked my way up to 375mg. Then, I started noticing little things that I was having trouble with. I couldn't fill out my bank deposit slip. I couldn't remember how to make tuna salad. Then I went out in the car one day only 10 miles from home in a fairly familiar area of town and I got totally lost! I got my MAPSCO book out, which I have used to navigate since moving here, to find where I was. I thumbed through page after page. I couldn't even find where I was. I was both lost and scared. Thankfully, I had a cell phone. I called my husband and told him the crossroads near my location and he told me what to do to get home.
     I had a follow-up appointment with my neurologist about a week later and told her about what had happened. She told me that I needed to immediately drop the medication 100mg that day and each week thereafter by 25mg until I feel like I am out of the fog. I am now down to 50mg. I am thinking about dropping it down to 25 even. My thinking is much clearer now.
     I was having trouble trying to communicate also. I was in the middle of saying something and could picture the object of what I wanted to say in my mind, but I could not get the correct word out. I was depending on my husband to "fill in the blanks" a lot for me. My doctor said that I was being over-medicated! What a frightening experience that was. patshuff@attbi.com


June, October 19, 2002 - Hi, I was diagnosed with class 3 CHF two years ago. My doc informs that my MUGA shows a normal heart, normal EF and that I can do rigorous exercising. Does this really happen? The doc said I did not react as he expected me too but it's hard to take in. How do I start everything over again? Is it possible? lapoune1@yahoo.com


Amelia, October 19, 2002 - Hi everyone, Memory - what's that? Mine left a long time ago. I put things away and forgot that I did and will come across whatever it is weeks later; or get up to do something and stand in the middle of the hall not knowing what I got up for. My daughter is encouraging me to get a toy poodle. She says it's good therapy for those with chronic illness but I am afraid when I let the little one out I will forget to let it back in or leave the house forgetting that I have a little pet. So much for loss of memory. My doctors also have no answers. Best wishes to all, Amelia. amelias@erols.com


Cat, October 19, 2002 - Hi, My doctor just informed me that my kidneys are not functioning properly. My creatinine was 3.5. He says that although I need Lasix to help control my pulmonary congestion and improve my breathing, he is worried about it "over-taxing my kidneys." I was wondering if there are others in the same boat who could share their experience with me. Thanks, Cat. lafsalot2000@yahoo.com


Jacky, October 19, 2002 - Hi, I just saw the results of my last EKG. Can someone please explain "left bundle branch block" and "left atrial enlargement." I understand that LBBB is not serious but does it make any difference with cardiomyopathy? Jackymwb@aol.com


Jacky, October 19, 2002 - Hi, I just found the answer to my question about LBBB on the Medspeak page; not atrial enlargement, though! Jackymwb@aol.com
 
Jon's note: It means your upper left heart chamber is enlarged (atrium)


Catherine, October 19, 2002 - Hi, I just want to say how much your posts have helped and encouraged me. You are all a great bunch of people. I am slowly adjusting to my new CM diagnosis - fewer tears. My mindset is the thing I need to work on now: getting a positive attitude and not worrying about the future. I don't have much to contribute at present, but I read the posts daily, Catherine L. ccash@kcnet.com


Lori K's October 19 reply to Jon's October 15, 2002 - Hi everyone, Jon, I wanted to comment on your findings with using Xanax for CHF. Years ago when the drug was new, I worked for the manufacturer selling the product. There was literature from NIH (National Institute of Health) showing that alprazolam (Xanax)lowered both plasma epinephrine and norepinephrine levels. Many physicians started using the drug immediately post-heart attack with improved oucomes. I changed companies so I am not sure what literature is out there today but it does seem like something worth looking at. Since it was approved for panic attacks, which again involves these hormone levels for longer-term use, it seems plausible it may help those with high norepinephrine levels. Once again, studies need to be done in CHF. It sounds like a good quality of life study! I hope all is well, Lori K. thegoof86d@aol.com


Jon's October 19 reply to Lori K's October 19, 2002 - Hi Lori, I think one reason studying Xanax for heart conditions in general was dropped was due to the trial results - they were all over the map. Some studies showed mild improvement and others showed no improvement. Other drugs in the same drug class showed slightly improved symptoms but at the same time in the same patients the heart's physical state actually got worse even though they felt better. These results were so varied maybe the manufacturer chose not to invest the huge amount of money to fund a large, strictly controlled trial. This is just a wild guess on my part.
     Another reason may be that circulating neurohormone levels don't always mean much as far as heart function, symptoms, or prognosis are concerned. It's whether the heart's receptors for these hormones actually latch onto the suckers that counts. ;-)
     It's like Coreg levels in the elderly. An elderly person's blood level of Coreg is usually at least 25% higher than in younger people on the same dose. However, it caused no difference in symptom relief or outcomes at all in trials. So sometimes, lab results showing altered levels of circulating drug or hormone make no practical difference in the illness or person with the illness. In the case of Xanax, I think it was unclear whether or not it made a practical difference large enough to merit a larger trial.
     More studies on this would be interesting, but the drug's potential side effects might limit a company's willingness to fund larger trials. Food for thought, though. Jon.


Gail, October 21, 2002 - Hi, I just dropped in to catch up and I have to agree with Scott. I think the memory thing is the stress of living with CHF and probably the fact that we notice it more than if we were healthy. I also hate to say it but I think age and sex (male or female) has a great deal to do with memory loss. The ladies in early menopause will probably agree. Maybe we need to kick back and just let it be. The more you worry, the worse it gets. gailshouse@hotmail.com


Annette, October 21, 2002 - Greetings, everyone, I have the symptoms of CHF. I have trouble breathing, the cough, fatigue, I spit up a frothy phlegm, edema, and am 30 years old. I was initially diagnosed with SVT and told not to worry now that I supposedly have CHF. I have 4 small children and no medical insurance to get medication. Do you have any suggestions? Plus, I do not qualify for low income health help. My health insurance ran out on me (COBRA). I can't work. Somebody help! apostolicestrada@aol.com


Tom S' October 21 reply to Cat's October 19, 2002 - Hi, Not having insider info on my creatinine level or what it represents I don't know if those nagging pains right along the small of my back are caused by kidney failure or at the minimum, stress on the old filtration system. I have had pains in my right kidney area for as long as I've been plagued with the other symptoms of CHF and lately it is spreading to the left side also.
     I have been told in the past that there has been protein in my urine and that the doctors were watching it. That doesn't relieve the pain, which one quack even ascribed to arthritis of the spine and was prepared to order a whole pile of x-rays and tests; conveniently to be done in his own office. Talk about conflict of interest. I've had another tell me it could be an enlarged liver, so I've never been sure. One thing I am sure of is that my urine output is occasionally stinky, a sweet smell at times and a stronger yellow tint to it. By the way, I take 320 mg Lasix a day and have been on that regime for 6 years. bigheart@muchomail.com


Staci H's October 21 reply to Amelia's October 19, 2002 - Hi Amelia, I think that getting a toy poodle would be a wonderful idea! Toy poodles are very smart, easy to house break and become wonderful friends. Trust me, you would not forget to let the little one back in. When he wanted back in, he would be sure to let you know!
     As for the memory thing, mine is a lot like yours. To make matters worse, my dad has just been diagnosed with Alzheimer's. I think the memory loss that comes with CHF and the meds is bad enough, and just could not imagine adding Alzheimer's. Does anyone know anything about the disease and it's early symptoms? Does having CHF make us more prone to a disease like this? I hope that you all have had a wonderful weekend. God bless! sunnyfla6@aol.com


Jon's October 21 reply to Staci H's October 21, 2002 - Hi, I just wanted to add that pets are indeed a great idea, but if you are not up to getting a puppy, please pick an adult dog from a shelter or rescue agency and make sure they are already housebroken, and check for obvious discipline or behavior problems. Raising a puppy can be very rewarding but it's also tiring sometimes. <g>
     I am sending you some Word documents by e-mail about possible supplements and Rx drugs for slowing Alzheimer's disease. As far as I know, it is not directly related to heart failure, and one does not create a tendency to getting the other. Jon.


Ruthie A, October 21, 2002 - Hi to everyone, When I was diagnosed with CHF nearly 5 years ago, I was very sick. I was in and out of the hospital and spent most of my time at home in bed. During one of those frightening and depressing days I prayed, "God, at least let me live to see my son married." At the time he was 16. Last Saturday night (the 19th), my dear son took a wife in a beautiful and meaningful ceremony. Afterwards, while going to the reception I looked up at the nearly full moon and prayed again, "God, I'm not ready to die!" I hope He answers this one too. ;-) I hope your week is good! Ruthie A. rlaba51@yahoo.com


Jacky, October 21, 2002 - Hi, I didn't make my question clear regarding atrial enlargement. I do know where it is but wondered if it is anything to be concerned about. Is it part of cardiomyopathy? I thought this was a ventricle problem usually. Jackymwb@aol.com


Thelma, October 21, 2002 - Hi, I have not posted in awhile since my situation has gotten so much more complicated that I don't know where to begin. I am just wondering if others are in a similar boat. I did seek a CHF expert over a year ago who was not a very good doc in my opinion. He put me on Coreg (when I have asthma) and I ended up not breathing well, but he ignored my symptoms and blamed them on me being overweight. I had no echos to follow me the whole time.
     Anyway, I eventually left and found a highly recommended cardiologist who says I don't have CHF. My EF is now 55%, up from the 30's. I have pulmonary hypertension, which is fairly severe. I'm a mess, to say the least, and am not sure what to think. I guess that is the problem when you change docs. Maybe all along I had PH. Did the Coreg make my asthma so bad that I now have PH? I have been off Coreg for awhile now. Is anyone else in a similar situation? Thelma. Tcull@prodigy.net


Hal, October 21, 2002 - Hi Folks, I am was wondering if there are folks in this forum that have left the country to seek medical attention elsewhere. Are there countries where I might get better treatment for less money? Best wishes to all. uncahal@webtv.net


Chuck H's October 21 reply to Myrtle C's October 18, 2002 - Hi, In most western states there are Trader Joe's stores which offer CoQ10 at a very reasonable price. Health food stores are the worst, but there's a chain called VP Discount that's better, but not as good as Trader Joe's. ital880@cs.com


Karen K's October 22 reply to Ruthie A's October 21, 2002 - Hi Ruthie, I smiled when I read your post. This is exactly what I have found beneficial. I was initially diagnosed in 1991 when my daughter was pregnant with our first grandchild. Of course, my initial goal was to see that baby born. He is now 11. Following this, my son was going through somewhat I would call rebellious or learning years. My goal was then to see him married. That happened in June of 2000.
     My goal now is to see Jason and Heather's first baby born. This isn't yet in the plans as Jason finally grew up and decided to go back to school. He basically started from scratch; his first 2 years out of high school were mostly spent partying. He even has gone so far as to start with a junior college, which to me makes sense. His grades were excellent last year. Following this year, his plans are to either take some more courses at the junior college or move on to the University of Minnesota. His goal: a degree in engineering.
     My goal: subject to change as circumstances change. Karen. karenk@mchsi.com


Vee, October 22, 2002 - Hi all, In my case, I totally attribute memory problems to Coreg and the inherent action of beta-blockers. Because of asthma concerns, I didn't start taking a beta-blocker until 2 years into my CHF. Up until that point, despite any disease process or anxiety about the diagnosis, my brain was still doing just fine. I started with metoprolol and that immediately made me feel so drugged and spacy that there was no doubt where the inability to be alert and pay attention came from. When I switched to Coreg, the effect was more subtle. I noticed I couldn't do things I was able to do effortlessly before, such as follow and remember a sequence of information like a 6-day weather forecast on the radio or process new information rapidly like reading road signs and responding rapidly on unfamiliar freeways. I think these effects started at even the minimal 3.125 mg dose and probably hit a plateau at low doses in my experience.
     So I suspect you would have to stop taking Coreg altogether to find out if it is really affecting your mental function, and that's too great a risk for most of us. I know I need the stuff, but the loss that goes with it has been a very big deal for me. I totally empathize with others out there who feel some impairment in jobs and situations requiring lots of mental and physical alertness and quick response.
     On another note, I hadn't been by in awhile and was saddened to learn that Bill Drummond died. I know his health had been declining in recent months. I have missed and will continue to miss, the warmth, wit, and candor he brought to this forum. imagine_@earthlink.net


Aubrey, October 22, 2002 - Hi, I've been away from this page for quite some time but have a question. Has anyone ever noticed taking CoQ10 raises their blood pressure? My blood pressure was usually 100/60 or thereabouts, but when I began taking CoQ10 at 240 mg, it seemed to rise. It could have been other factors altogether, but just wondering. aubrey.mutch@sasktel.net
 
Jon's note: Did you start at 240mg?


Joseph P's October 22 reply to Anne's October 21, 2002 - Hi, How long did your COBRA benefits last? If you leave work due to medical, it is supposed to be offered for 36 months. joeandol@shawneelink.net


Jon, October 22, 2002 - Hi, To expand some on what Joseph told us, here is how long I understand COBRA (Consolidated Omnibus Budget Reconciliation Act) benefits to last:

  1. Up to 18 months for covered employees as well as their spouses and dependents.
  2. Up to 29 months for employees who become disabled during the first 60 days of COBRA coverage (and their dependents)
  3. Up to 36 months for spouses and dependents facing loss of employer-provided coverage due to an employee's death, divorce or legal separation, or certain other "qualifying events."

Other qualifying events:

In the case of people who are disabled according to Social Security, coverage may extend another 11 months (29 months total). Disabled ex-employees must ask their health plan administrators for the 11-month disability extension (beyond the standard 18 months of COBRA). A notice must be provided within 60 days of being approved for SSD disability and before the end of the original 18-month period of COBRA coverage. COBRA coverage can be retroactive in some cases. If you qualify for Medicare after starting COBRA coverage, you may lose COBRA coverage - if you get SSD, you automatically get Medicare at 24 months after date of disability.
     More COBRA act info can be found at www.dol.gov/dol/topic/health-plans/cobra.htm and elsewhere on the Web. I have not researched this so I would strongly suggest talking to a lawyer or to the Department of Labor if you think you're entitled to further COBRA coverage. You have 60 days after losing your job (or otherwise qualifying for COBRA) to tell your employer you want COBRA coverage and it ain't cheap.
     HIPPA (Health Insurance Portability and Accountability Act) may apply to some people having trouble switching plans with pre-existing conditions as well. Jon.


Ruthie A, October 22, 2002 - Hi, I want to comment on the memory loss issue. I wish my problems with memory loss were due to stress, worry, or anxiety. That would make it a lot easier to cope with. However, I am not a worrier, nor am I anxious. I can also handle enormous amounts of stress. CHF has been a part of my life for so long now that unless I decompensate pretty badly, it doesn't phase me much anymore.
     I believe my memory problems are due to my meds and oxygen deprivation. I had a sudden change in my mental capacity once I began the meds for CHF and it has diminished slowly but surely ever since. While some people may have memory problems due to stress or worry about their health, not every person does. Nor is age necessarily a predictor of memory loss, especially middle age in menopausal women.
     This is my opinion. I don't have the statistics to back up my comments. Ruthie A. rlaba51@yahoo.com


Joe S' October 22 reply to Staci H's October 21, 2002 - Hi, I have a better solution regarding pets. When I found out I could no longer bend over to pick up things I got a real dog, a German Shepard. I trained her to pick up anything I dropped and to stand by me so I could use her to get up.
     No, seriously, any pet is good and they are a great solution to the unsavory types roaming around. My dog saved my grandkids once.
     To Gail, have you found any solutions on how to stop worrying. It's my second nature. Phillipians 4:6-9 helps me a lot. Joe S. jes@gbis.com


George S' October 22 reply to Thelma's October 21, 2002 - Hi Thelma, I'm sorry to hear you had a bad experience with a CHF specialist. Like all medical fields, all docs are not apprpropriate for the individual patient involved. I would strongly suggest that you have your current doc (no matter the specialty) run a BNP blood assay. The retail cost is less than $50 and it is the only current single diagnostic tool available to determine if you possibly have CHF. Jon has some very good info on this site about the test. Best of luck. georgeselin@myppi.biz


David B, October 22, 2002 - Hi, I just got back from a trip to St. Louis to see a heart failure specialist at Barnes-Jewish hospital. I am very glad I went. The doctors there were very helpful and answered all my questions. I was told by another doctor if I had a heart attack I would not survive, but at Barnes the docs said I have a very low chance of having a heart attack, since I have clear arteries and veins.
     Just to warn everyone, my potassium got too high and my previous cardiologist took me off spirinolactone, which was a big mistake and put me in the hospital. I was walking a mile a day but now I can only walk about a quarter mile if I'm lucky. Going off the Aldactone (spironolactone) hurt me a whole lot. davybwilson@webtv.net


Karen K's October 22 reply to Joe S' October 22, 2002 - Hi Joe, Your post regarding getting a German Shepherd and training it to pick things up for you and also the dog helping you to get up is not at all far-fetched (ahem, a slight pun). There are dogs actually trained to help folks who have diseases such as my husband (MS) who is progressing to the stage where he does fall and has a very difficult time getting up. Unfortunately, he doesn't have a dog and most likely if I told him about them, it would be all the more reason not to get one, Karen. karenk@mchsi.com


Cristina L, October 22, 2002 - Hi, I read the posts every day but haven't posted anything in a long time. Since everyone is still on the subject, for me, I lost my memory and the ability to remember what I was in the middle of doing when my children were first born 7 years ago. Is there any study that indicates medicines can cause this? My husband is also the same way with his memory and he doesn't have CHF or take beta-blockers.
     As far as sleeping. I'm so wiped out by the end of the day that as soon as I hit the pillow I'm out. Keep in mind I'm up at 6:00 AM. I take the kids to school, work until 3:00 PM and then dinner, wash, showers and baths, etc,... I actually feel the opposite. I feel like I can't get enough sleep. I can sleep 8 to 10 hours a night and still feel tired. I'm on 150 mg of Toprol-XL. I think most of you are on Coreg, right? clisa@ridgewoodcapital.com
 
Jon's note: Coreg's vasodilating action might make you feel even more tired. <g>


Natalie K's October 22 reply to Ruthie A's October 22, 2002 - What a great and encouraging post, both of you, Ruthie and Karen K! Tonight my husband and I celebrated an anniversary with our son, daughter, and son's friend. I wondered if I would live to see a change in this configuration or if only they would, and you give me heart. One difference CHF has made for me is the degree to which I was conscious of "how the roses smelled" tonight. This board is a lifeline. mcnat45@yahoo.com


Joseph P, October 23, 2002 - Hi, I wish memory loss was the only thing I had. Being a male I lost something more important than memory, it being the other thing that makes two people happy. Joe. joeandol@shawneelink.net


Ben B's October 23 reply to Joseph P's October 23, 2002 - Hi, Everybody has their own opinions on this. I am sure many people will tell you to just accept it and that is certainly a possiblity. There are, however, many new treatments for this and many which are safe for people with heart disease of various types. Some do not affect the overall cardiovascular system. Of course, some treatments require a bit of unpleasantry to perform. Also, there are some people for which no treatment is an option. All these are considerations to be taken into account.
     All I am saying is that there have been many medical advances in this area and it doesn't hurt to talk it over with your cardiologist and a urologist. Perhaps you already have, I don't know. At any rate, there may be some people that think every CHF patient just has to automatically give up on sex and accept impotence. I'm just saying not every heart patient has to just give up on this part of life. bdbrinkman@juno.com


Gene, October 23, 2002 - Hi all, I have a question regarding strange rhythm problems I have. I am 57 years old with 3 stents (due to 95+% blockage), 4 blockages in the 40 to 50% range, atrial fibrillation, 3 mildly leaking valves, left ventricular enlargement, and what my doctor describes as a thick and stiff heart wall. All this is compounded by asthma and COPD. My EF was at 58% at the last echo.
     My question is, has anyone out there experienced weird heart rhythms that come and go? Example: last night my heart went into an irregular, hard beat that lasted all night and is still there today. When I have these episodes, my heart will race with just a half-flight of stair climbing, which is not normally the case. Today I am still experiencing the rhythm problem and am also very lightheaded.
     I have experienced this before and it usually goes away after a few days. I sometimes go for weeks without the problem. Does anyone out there have a similar problem or know what could be causing it? It never happens when I am in the doc's office. Is it anything I should be concerned about? galaxie406@earthlink.net


Jon's October 23 reply to Gene's October 23, 2002 - Howdy-doo, I don't think you should get extremely worried about it. However, any and every irregular heart rhythm should be investigated until it is identified, without fail. Few arrhythmias are really dangerous but you have to be sure yours is not one of that small group. Talk to your cardiologist about it and you'll probably get a 30-day event monitor. Jon.


Russell, October 23, 2002 - Hi, Has anyone ever used the Knights Pharmacy mail-order company from Canada (www.canadaDiscountRX.com)? What brought this together for me was the advertisement in our paper and the first time I have had to buy all my meds since my samples are all gone. It cost over $300. Doing the math, it gets reeeeeeeally expensive so if there is a way to save some money I want to explore it. rgetz@rbhs.w-cook.k.12.il.us


Tom S' October 23 reply to Joseph P's October 23, 2002 - Hmmmmm? I thought that money was the "other thing" that makes two people happy. Now I don't have memory, money but my wife does tell me all the time that I am "importent." bigheart@muchomail.com


Jennifer, October 23, 2002 - Hi, My mother has CHF and she has to have a total knee replacement in a few months. She is worried about the risk of having CHF along with the knee surgery. I understand that she may have to have an spinal instead of general anesthesia.
     Is there anyone out there who has CHF who has had a knee replacement surgery? She is greatly despressed by the fact that she has to have the knee replaced but also by the fact that she thinks she is the only person with CHF who has to have it done. I'd appreciate any information or encouragement that I could get for her. Peace, Jennifer. jkemp@birddogcreative.com


Dee L, October 24, 2002 - Hi, Can you tell me what determines when you go on inotropic drugs and when you do, are you taken off all your other medications? Thank you. dddeedurham@webtv.net


Jon's October 24 reply to Dee L's October 24, 2002 - Hi Dee, In CHF patients - not related to surgery - inotropes are usually used when all other drug treatments fail to relieve symptoms. They are occasionally used to keep the heart strong while your body adjusts to other drugs that may slow heart rate or lower blood pressure. It is possible but unlikely that other heart failure meds would be discontinued. Jon.


Jon, October 24, 2002 - Hi, Does anyone know of any very cheap, or free heart help other than this board? I was told 2 1/2 years ago that I had 2 months and 4 at the outside. Luckily I am a vet, so I get my drugs paid for but no other help. My VA doctor knows less about my problem than I do. His idea of treatment is to continue the same meds and make another appointment in 3 months. If I make it back to that appointment we do the same thing. The VA is starting to get crowded, so now my appointments are 5 months apart.
     Is there anyplace I can go to get some real help without cost, since my only income is VA Disability? Which, by the way is only about $800 per month and they reduce that dollar for dollar if you earn anything. Don't get me wrong, I'm grateful for the VA help, I would just like to live a little longer too. Tikcuf@att.net
 
Jon's note: Hi Jon, Please use a last initial so people don't get posts from you and me confused


Sharon W, October 24, 2002 - Yeah! What a nasty process! I applied for Disability in October of 2001 with post-partum cardiomyopathy, 30% EF, CHF, asthma, and a few mental quirks like anxiety and depression - there's a surprise, eh? I had listed these various reasons with my heart stuff being first and foremost, which should have taken care of the process.
     In April I think of 2002, I was denied the first time. This is routine! SSA in Oklahoma at least doesn't look at everything. I mean, they ordered some of what I listed but not all, in reference to my meds providers and medical history. In their letter to me, they clearly had not looked at my case very hard.
     The next step was to reapply and it was even worse that time. I received essentially a form letter which would have fit a stranger's situation better than mine. I was rather shocked so my trusty lawyer went to bat for me and we applied for a hearing. Here is the good part: the lawyer can at this time submit more info, more recent records, etc,... He talked to the wonderful judge, who offered to settle right away if we would move the date of onset of disability to a date about 5 months later. This was a loss of about $2500. However, I decided that I would rather ditch the whole legal hassle and stress. I was told that the letter of approval, then award, would probably occur within 2 1/2 months.
     I received my letter of approval in 3 days and the judge chewed out the SSA royally and officially in a court document. The money is in my bank account, just 2 weeks later! Now I can go buy more CoQ10, which does seem to make a difference.
     I hope that this experience helps - just hang in there! List everything wrong with you. Our funky hearts make other small things big, like those nasty puffs of albuterol inhalers for asthma patients - whoa! With lots of love and lots of heart, Sharon. sharewilson@directvinternet.com


Sharon W, October 24, 2002 - Hi All, Since I have been told by my CHF specialist that eventually, but not yet, I will need a heart transplant, I am concerned about how far away I can live from a transplant hospital. My husband has a very good shot at a great job about one to 1 1/2 hours from the nearest facility here in Oklahoma. The bump in pay is significant with much much better insurance, which means more money for heart stuff; we can really suck up the money, can't we? How far away can we live and be okay? We would have to sell our home here to do this, so I am gathering info now. Thanks. sharewilson@directvinternet.com


Jon's October 24 reply to Sharon W's October 24, 2002 - Hi Sharon, Why not ask someone at that transplant center, probably a heart transplant coordinator? It will largely depend on 2 things: whether you will really need a heart transplant (which cannot be predicted); and what shape you are in when you get listed for a donor heart. If you are so sick you have to stay in the hospital, it won't matter much how far away you live. If not, there will probably be a one to 3 hour limit to allow you to be called or paged and then get to the hospital and be prepped in time for the donor heart.
     This is the kind of decision you must go the source to get info about. If it were me, I would ask multiple people at the transplant center. Jon.


Sherishe S' October 24 reply to Cristina L's October 22, 2002 - Hi, I agree with Christina about not getting enough sleep. I have 3 small children and I have no trouble falling asleep and hope that the reverse that everyone seems to be experience doesn't start to happen.
     I found out yesterday that the ablation I had to my thyroid has finally taken effect. I am currently profoundly hypothyroid which could be why I have been extremely fatigued, depressed, cold and many other things. Fortunately, I get to stop taking 12 pills of one med per day and switch to one pill of another for this problem. Hooray!
     I say all this to say that as my endocrinologist says, everything is affected by the endocrine system and thyroid issues are seen in people in their late 40s to 50s. Sometimes these changes are so gradual that you miss them. I don't believe that thyroid testing is expensive, so perhaps it would benefit some of you to see if your doc has done or will do a thyroid panel test on you, especially those who are overweight and finding it hard to keep the weight off despite diet and exercise.
     Also, are there any over the counter meds that you guys stay away from or recommend? I read the info about germs but I have 2 kids that attend the germ headquarters called school, and I will need to take something now and again so I can sleep and breath. Smarrfive@wmconnect.com


Jon's October 24 reply to Sherishe S' October 24, 2002 - Hi Sherishe, You should ask both your cardiologist and your pharmacist about this. The main rule is no over the counter or prescription decongestants! These cause the exact effects you take meds to fight and can be dangerous. That includes decongestant nasal sprays. I believe there are things you can take but it can vary from one person to the next depending on your exact health situation, so please ask the doc and pharmacist. Jon.


Mike H, October 24, 2002 - Hi, Has anyone heard of albuterol being a major contributor to CHF? My CHF specialist told me that he thinks this is what caused mine. He also mentioned that there was another patient of his that had a similar case to mine as far as age, condition, etc,... She also took albuterol. Thanks! mikehull007@yahoo.com


Cindy, October 24, 2002 - Hi, For a MUGA, do they put a IV in your neck? Someone said that it was put in the neck. I checked the page that describes the heart tests and it doesn't say that it is a neck IV. I thought IVs were in the arm but sometimes real difficult cases might require a heart cath through neck. Yikes, tell me your page is not being evasive Jon, and that it is an arm IV. cindy19335@yahoo.com


Jon's October 24 reply to Cindy's October 24, 2002 - Howdy-doo Cindy, I can only tell you what I tell just about everybody: Quit listening to "somebodies" and read my pages. <g> The "neck IV" is actually a Swan-Ganz catheter and is used to measure pulmonary and right heart pressures. It has no place in a MUGA, only in a right heart cath procedure. My site specializes in calling them like they are. ;-) Jon.


Tom S' October 24 reply to Jon's October 24, 2002 - Hi, There Jon, now, there is no confusion between you and him. (Jon's note - it confuses me! ;-)
     I think $800 a month from the VA is pretty generous considering I get no monetary payments from them but do from Social Security Disability. Do you also get SS disability? If not, why not? Obviously if you were given 3 or 4 months to live, then you must be disabled and should have started that process awhile back. Your disability payments from SSD will be dependent on what you paid into the system during a specified period of time, usually several quarters just prior to you becoming disabled.
     As far as being told you were going to be dead in a relatively short period of time, that is not a unique thing. My wife and older children when I was in the hospital were told I had 3 days, maybe a month if I was lucky, and that was 6 years ago. Join a not so exclusive club.
     I also enjoy the services of a VA Hospital Clinic in Salisbury, North Carolina and have been very impressed with the service and quality of medical care I get there. They are also very conscientious and it always amazes me that each and every person I deal with there remembers my name before they even look at my arm band or chart.
     Don't look a gift horse in the mouth. The price of free or very low co-pay medicines is worth the hassle of having to spend a half day or so at the VA hospital or clinic every 3 or 4 months. I've been managing it for the past 3 years and I am proud and happy that my government cares enough for veterans like you and me to extend that type of service to us. I doubt you would find a similar system in most foreign countries.
     If you feel shortchanged because you don't believe the medical community is hanging on your every breath and counting the heart beats, again, join the crowd. I finally got disgusted with my primary cardiologist who set appointments for rechecks with me annually rather than biannually. I challenged him about why he didn't care.
     He flat out told me that they had done everything they could short of a transplant and that the meds they had me on were doing their job of maintaining life in my body. Frankly, I am grateful for every second I spend on this earth with my wife and children, and don't see any clear advantage to sitting in a doctor's office wasting space and their time if there is no need to do so.
     Perhaps you are new to CHF. There is not a soul on this board that does not sympathize with what you are going through. Most of us have been through just about everything you are presently experiencing as far as heart twitches, spasms, dizziness, nausea. muscle aches; kidney, chest, and arm pains; and and a myriad of other things you are yet to experience. Some are caused by your CHF and some are caused by the meds you are taking. Eventually you almost can tell which is which.
     Finally, welcome to one of the best groups on the Internet. You are among friends and people who care. Also, don't hesistate to ask us for advice or just a pat on the back once in awhile to remind you that you are not alone. bigheart@muchomail.com


Amelia, October 24, 2002 - Hi, after my EPS and ablation (RFA) my doc told me to take Lasix every day even though I may not be aware of fluid retention. He said it was to keep the fluid away from my heart. Can fluid build up just around the heart and can one be aware of it? How is it detected? I would appreciate any info on this. Best to all. amelias@erols.com
 
Jon's note: Fluid can build up literally anywhere in the body


Craig B's October 24 reply to Ben B's October 24, 2002 - Hi, The statements: "I am sure many people will tell you to just accept it" and "At any rate, there may be some people that think every CHF patient just has to automatically give up on sex and accept impotence" are not for people that may be suffering from some kind of impotence! Who'd want to hear or accept those? Anyone that tells you such nonsense you should not be listening to. I don't know what exact medical advances you are refering to as far as "breakthroughs" in the area, but I for one would never listen to statements or comments like those two!
     I have idiopathic dilated cardiomyopathy with an EF of 30%, a heart 3 times normal size, and am on Coreg, aspirin, ramapril, spironolactone, and Lasix. My CHF specialist recommended Viagra for me although obviously this would not be a choice for everyone. Something else to look at is www.chfpatients.com/text/aldosterone_antagonists_2001.txt.
     Anyway, good luck guys. Feel free to e-mail me. bayce@optusnet.com.au


Joe W's October 24 reply to Jon's October 24, 2002 - Hi Jon, I agree with Tom S' that we are lucky to have a VA system to help us vets. We will never have to worry about expensive drug costs if the VA continues to be funded in the future or costly tests. I have had CHF for a year now with an EF of 20%. I had to stop working and couldn't afford the high price of COBRA.
     Since that time I have been using the VA system. I can tell you my experiences have been nothing short of excellent care. I personally believe I get better care from VA than I did from my previous doctor and private hospital, which is a heart transplant center. Lots of people would love to have our access to inexpensive meds.
     I read these posts each and every day, but rarely post. God bless all and thanks for this great site, Jon. josephwarr@aol.com
 
Jon's note: Thanks. From reading his post, I don't think Jon was complaining at all and he does appreciate the VA's help - he just needs a bit more to get all the care he believes he needs, is all. We've all been there one time or another. ;-)


Sherishe S' October 25 reply to Jon's October 24, 2002 - Hey Jon, Thanks for the info on over the counter meds. Also, the radiation to my thyroid wasn't radiofrequency ablation, it was radioactive iodine ablation. Also, I would like to add that I hear many symptoms of underactive thyroid activity here such as inability to concentrate, memory loss, weight gain, and depression. The test to check thyroid function is called a thyroid funtion test and it is suggested that people get tested at age 35 and then every 5 years until age 50 when they should be tested yearly. Again, I'm not trying to diagnose anyone; like we need something else to worry about, but it is simple info and thyroid hormone does affect the heart's ability to function. Smarrfive@wmconnect.com
 
Jon's note: Thanks for the correction - I've been running on autopilot lately. <g>


John, October 25, 2002 - Hi, This is the best site that I have come across in my 3 years with CHF. jjust4jesus@aol.com


Ben B's October 25 reply to Craig B's October 24, 2002 - Hi, Maybe I wasn't clear and sounded like I disagreed with you but I agree with you 100% wholeheartedly and I couldn't say it any louder. The treatments I am referring to include Viagra, but also injections for those people who can't take Viagra or for whom Viagra doesn't work. As far as the statements I referenced, I've read them posted here and when I respond to them I feel like the Lone Ranger. I hope you are around to post and disagree with people who disagree with you - I'm not one of them. I was just trying to be diplomatic, which maybe I should stop doing. <lol> To reiterate, I don't believe anybody should just live with any condition without trying to find a medical solution, especially a problem like this. bdbrinkman@juno.com


Tim's October 25 reply to Mike H's October 24, 2002 - Hi Mike, This is my first time on this board, and my first message. I turned 54 yesterday. Concerning your albuterol question, I can only tell you that I was prescribed that inhalant on 8-30-02 for chest congestion in combination with a sore throat and a lot of coughing. After a few weeks I got better, then worse for a week, then better, then real bad about 10-5-02 and on 10-8-02 I was admitted to the hospital with heart failure. The cardiologist says I have a 15% EF and a heart about twice normal size bu echo. A cath showed I have no blockages. I got out of the hospital on 10-14-02. Supposedly, the "virus" they think I had attacked my heart.
     Your message now has be wanting to know more about the possible albuterol connection. I wold sure like to see that chest x-ray my PCP had taken on 8-30-02 to see if I had more than a cough back then, like an obviously large heart that wasn't diagnosed. Tim. t.nash@earthlink.net


Craig B, October 25, 2002 - Hi, Just as a further thought on the impotence issue, do you know or can you point us to anything about eplerenone as a replacement for spironolactone, which has negative side effects relating to this problem? Is it widely available, is it better, your thoughts generally? Regards, Craig B. bayce@optusnet.com.au


Tom S' October 25 reply to Craig B's October 24, 2002 - Hi, I didn't want to jump into the impotence fray but feel there are many more mitigating circumstances surrounding the ultimate physcial act of love. I would find it hard to believe that a responsible doctor would advocate use of Viagara for a heart patient when the very thing Viagara does is restrict blood vessels so they retain blood, in a particular organ. I don't know it the action is systemic but that would seem to be an odd choice for anyone with a low EF.
     Then there is the question of desire or libido. I noticed my libido fell off almost to nothing when I got sick and that was 6 years ago. I use to say it would take an act of Congress and a construction crew to get me up but it seems like it would take a lot more than that today.
     There is also the question of stamina and fatigue. As for myself, when my EF was around 30, pulling on socks and tying my shoes was a major physical challenge. I can't imagine particpating in the sex act, which I am told is like climbing a flight of stairs. I am sure there are those who try to climb more than one flight in a session and I doubt seriously I could make it up the first 4 steps, let alone the whole stairway.
     So I think any talk of impotence has to include these other factors, particularly when you are talking about CHF sufferers. bigheart@muchomail.com


Jon P, October 25, 2002 - Hi Tom and Joe, I am very grateful for VA assistance. I was approved for SSD but you can only collect one or the other. The VA offer was higher so that was what I chose. My question was about competent medical help.
     When I was in the non-VA emergency room with CHF, the ER doctor prescribed several meds for me and this is the prescription I am on now, with no changes. When I went to the VA they took a blood sample and renewed the prescription that I was on. That was 2 1/2 years ago. Each time I go back to the VA they do the same thing. They took a CAT scan or an MRI (CRS is affecting me right now) but said that it didn't come out and would have to be re-done, and this has never happened. So my trips to the VA consist of only a blood test and a renewed prescription. I just thought that maybe there was something more that could be done. tikcuf@att.net


Katherine H, October 25, 2002 - Hi, I've got a lousy cold and am wondering if there is any cold medicine I can take that is safe for people with CHF. For now I'm not taking anything but am concerned this cold will cause my asthma to flair, so I am wondering if there is anything out there. Thanks. kholian@msn.com


Cat's October 25 reply to Mike H's October 24, 2002 - Hi, With regards to your post about albuterol contributing to or causing your CHF, I've often wondered myself. I developed cardiac problems soon after being diagnosed and treated for emphysema. According to my doctors, although inhalers should be used with some caution in patients with heart disease, it delivers the medication specifically to the area where it is needed most (lungs and airways) without affecting the rest of the body. I did get considerable tachycardia with regular use of albuterol but found that I did much better when I was switched to Serevent and started taking Accolate. Take care, Cat. lafsalot2000@yaoo.com


Richard M's October 25 reply to Jon P's October 25, 2002 - Hi, I think someone is pulling your leg. You can be on VA disability and SSD at the same time.
     Now about VA medical care, it is not the same over the whole country. In some spots it's wonderful and other spots downright stinks. I think it has to do with how many vets live in a state. If it's like Florida, then their care is not that good in some hospitals. Don't get me wrong. If you're a vet, it's a great thing to have medical coverage but let's be honest: the service is not all that great. Malczewski@attbi.com


Cat, October 25, 2002 - Hi, I've worn a loose fitting size 10 for years up until last week. I was wearing them one day and literally couldn't the very next day because of sudden abdominal distention. I've had edema with the CHF, but nothing quite like this. I currently have no other symptoms that usually go along with an exacerbation, and am wondering if anyone else has had a similar experience? I'm also wondering if it could be my kidneys. Thanks, Cat. lafsalot2000@yahoo.com


Amelia's October 25 reply to Tim's October 25, 2002 - Hi Tim, You can always obtain any of your medical records. Going in person and signing a release will allow you to not only have a copy of the radiologist's report of your x-ray but you can also have a copy of the x-ray, or you can mail a release note and they will mail the report to you. It would be interesting to know what your heart looked like then. Good luck. amelias@erols.com


Tom S' October 25 reply to Jon P's October 25, 2002 - Hi, Why go with the VA benefits when the benefit to your wife or children would be cut off once you are deceased. I checked into VA benefits several years ago when I qualified for SSD and they were about 10% of what I actually receive from SSD.
     Of course neither I nor any of us were made privy to all the details of your situation. I happen to have 5 children living at home from ages 9 to 19 so it was important to have some form of income that would continue after I died, which is still a very distinct possibility. Minor children continue to receive benefits after I am gone until their 18th birthday and as we have discovered, the amount that each child receives is added to the minor childrens' check so they really don't lose anything. My wife also continues receiving my benefit until she either goes on regular Social Security or on the 18th birthday of my last child to turn that age. Also, SSD allows you the luxury of Medicare once you have been on SSD for 2 years.
     Also I am not sure what you are asking. Are you going to a full-blown VA medical center (hospital) and if you are, where is it located?
     The only other option you would really have is to seek out a primary care physician, but if you don't have insurance then you might have difficulty doing that. Because I have Medicare coverage despite the fact I was only 52 when it started, I have not had too much difficulty not only getting a primary care physician, but also have kept the cardiology team that originally treated me when I went into the hospital 6 years ago at death's door.
     Medical care is pretty much a pay-as-you-go business now, with payment in some form being asked for up front or positive proof of insurance coverage. It's just become a nasty reality in our modern society that money and the insurance companies rule health care access. There are of course, exceptions to the rule, and I have found some pretty decent doctors that are still around and do a certain amount of free work. Perhaps you can check with your local Heart Association, or even United Way, but I would guess they would not be too much help in that direction.
     Again, I am not really sure what your question is but there is the only answer I can come up with. Bigheart@muchomail.com


Jon's October 25 reply to Jon P's October 24, 2002 - Hi Jon, The Vietnam Veterans' of America organization says: "Veterans can receive both SS disability insurance benefits and VA disability compensation. There is an offset of the VA pension or compensation with SSI benefits."
     The VA says: "Veterans with low incomes may be eligible for monetary support if they have 90 days or more of active military service, one day of which was during a period of war. The discharge from active duty must have been under conditions other than dishonorable. The veterans must be permanently and totally disabled for reasons traceable neither to military service nor to willful misconduct. Payments are made to qualified veterans to bring their total income, including other retirement or Social Security income, to a level set by Congress. Countable income may be reduced by unreimbursed medical expenses." I do not know what the level set by Congress currently is.
     "Active duty or active duty for training in the U.S. uniformed services has counted toward Social Security since January 1957. Since Jan. 1, 1988, work as a member of the Armed Services reserve components while on active duty training also counts toward Social Security."
     The Army says (you did not give any details of your service so I must fly blind here): "(b) If you become seriously disabled before age 65 and have sufficient Social Security coverage, there's a chance that you'll qualify for disability insurance payments. These payments would be in addition to any disability payments you might already be receiving from other federal sources. You may qualify to receive Social Security disability benefits while you still are on active duty, so you should apply at the earliest possible time. (c) In addition, certain members of your family may also qualify for payments because of your disability. ... (f) You may visit a local Social Security office to learn about the disability program and file your claim, or if you can't get to this office because of your medical condition, a Social Security representative will come to you."
     I suggest you look into it further. Jon.


Mel G's October 25 reply to Katherine's October 25, 2002 - Hi Katherine, Last time I had a really bad cold I felt like I just couldn't breathe at all and was taking oxygen at home a couple of times a day just to stop me from gasping. My cardiologist later told me that the "good old-fashioned snort of saline" might help. That's a medium-salty solution of warm water that you put in a basin and using a palm full you try to suck up through your nose. It sounds gross, but he said to try it 3 or 4 times at each go, twice or three times a day and it should help. He said definitely "no cold medicines of any kind" for me. I hope you find something that helps your symptoms. falmouth@bigpond.com


Marsha H's October 25 reply to Tom S' October 24, 2002 - Hi, I want to shout amen to your comment about not knowing how long you will live. I was diagnosed in 1971 with CHF and the doc took my husband aside and told him to make funeral plans because he didn't think he was going to be able to pull me through. I had severe symptoms 24/7 with blueness, SOB, etc,..., no matter what meds they used, and I was begging for oxygen.
     Fast forward to 2002. I'm still considered a cardiomyopathy, but it doesn't matter because I feel good enough most of the time as long as I play by the CHF rules. I've heard it said that when we spend too much time worrying about what "might" happen, we are whittling on God's end of the stick. jeffsmimi@earthlink.net


Jon P's October 26 reply to Jon's October 25, 2002 - Thanks Jon, When I originally applied for SSD they told me that I could not collect both or even a partial of both SSD and VA Disability. I was in the Air Force during Nam from 1962 to 1966 so I may qualify for something. I'll try again. Thanks, I appreciate your helpfulness. By the way, if someone did confuse us, I would be honered. Jon P. tikcuf@att.net
 
Jon's note: Thanks, Jon. Try The Vietnam veterans group web site at www.vva.org/Benefits/ptsd.htm#SS%20Benefits. They should have some accurate answers - I just skimmed stuff to see if it was worth you looking into.


Craig B's October 26 reply to Ben B's October 25, 2002 - Hi Ben, It's good to here, mate. I just wanted to clear that up (excuse the pun). To Tom, one thing I have discovered is that specialists know a lot more than us, they just do. We know bits, but they know lots. I guess that's why they are specialists.
     My specialist has 30 years behind him, has saved my life and many others, and I believe him when he talks. He tells me there are certain types of heart conditions where Viagra is bad for those patients, but he assures me in my particular case that it would be finr to use such drugs. He even wrote a letter to my PCP stating same.
     Now, when I was admitted to the hospital to be diagnosed, I was in a terrible state. I couldn't get off oxygen for a week, had a lung infection,12 kilos of fluid retention, and a case of pneumonia. My EF was 15% and my oxygen was so low that some people wondered why I was still alive at all. On top of all that, the next day when my wife came to visit, I still felt my desire and libido as strong as ever. I'm only 40 and I reckon I've still got at least 40 years left. If anyone told me to accept it, I'd certainly not listen to them! To me 40 is still young; I've barely lived. Ninety is getting a bit on in years and maybe I'll stop my libido then. Forget it now though, I refuse to accept that.
     Anything on that eplerenone, Jon? bayce@optusnet.com.au
 
Jon's note: I'm still researching albuterol


Tom S' October 26 reply to Marsha H's October 25, 2002 - Thank you Marsha, For starting my day with a real chuckle. I loved the "whittling" saying; it has a real down-home truth spun in it. bigheart@muchomail.com


Joe S, October 26, 2002 - Hi, I don't know what this is worth, but for decades I have suffered from pressure (gas) around my heart. Many times it felt like a heart attack. It caused me to take thousands of hours off work and go to bed. The old PCPs used to laugh and tell me to stop eating anything spicy. I did, but many times nothing I did or took would help.
     Well, 2 weeks ago my wife bought liquid Bean-O drops. I can't believe the results. No more phony heart attack feelings and I even lost 5 pounds. I have again felt for decades that a lot of problems some people have are related to food allergies. It takes work to find out what you're allergic to, but it is worth it. Joe S. jes@gbis.com


Richard M's October 26 reply to Jon P's October 25, 2002 - Hi, Are you on a disability pension or are you on disability compensation? There is a big difference.
     1. What is VA Pension? Our pension program provides financial support to wartime veterans who have a limited income. The amount of pension we pay depends on the amount and type of other income you and your family members have. 2. Disability compensation benefits cover chronic illnesses or injuries incurred during or worsened by military service. malczewski@attbi.com


Staci H's October 26 reply to Joe S' October 22, 2002 - Hi, A Toy Poodle is not a real dog? I like German Shepherds too but one would hardly fit on my lap! <g> Jon, thanx for all the info, I found it very helpful. You all have a great weekend! SunnyFla6@aol.com


John Len, October 28, 2002 - Hi, It's been some time since I have posted but I am now at my wit's end. For the last 3 months I have these epesodes of feeling like I am going into low blood sugar (feeling faint or flaked-out and start sweating - I am an insulin dependent diabetic) and they leave me weak, but when I check my blood sugar, it is in the normal range as is my blood pressure. These episodes last from 15 minutes to an hour. I have been in the emergency room at least 5 times in the last 3 months for this condition and they have done every blood test known to man.
     My heart medications are 25mg atenolol, 5mg Norvasc, and 40mg Zocor. My cardiologist, regular doctor, and diabetic clinic cannot come up with an answer. In the past I have had 2 bypasses with a heart attack in between. Does anybody have any thoughts on this? a_lenny6@hotmail.com


Gail's October 28 reply to Cat's October 25, 2002 - Hi Cat, Not to make you worry or anything but I have been told that abdominal edema is as common as edema in the feet or hands. I had abdominal edema quite badly before my heart attack and I still get it. but now I know what it is and take extra diuretics. My comment is, tell your doctor. gailshouse@hotmail.com


Myrtle C's October 28 reply to Joe S' October 26, 2002 - Hi Joe, Beano is a good product for me whenever I eat gas-producing foods, such as dried beans, lentils, cabbage and sweet potatoes. For those who have problems when drinking milk or dairy products, Lactaid is another product that helps. My only problem is that I can no longer find the Lactaid in drops. I added this to my milk and let it stand in the refrigerator for 24 hours. I now purchase milk with Lactaid added. These are not allergies but with the dairy products (not yogurt) it is lactose intolerance that causes the havoc. omie@axs4u.net


Jon, October 28, 2002 - Hi everyone, The following pages have been updated:

I tried researching albuterol's link to CHF diagnosis. However, what I found was not enough to reach any conclusions at all. The one journal article that might have really helped requires a paid subscription to a major medical journal to access, despite it being 4 years old. I can't afford any of the major medical journals yet; maybe some day. Jon.


Hal, October 29, 2002 - Hi Gang, There is much information on this site that I can no longer access. I can't read it with webtv. One thing I'm interested in is the use of CoQ10. How much? Does it have negative things going for it? My aches and pains are nothing compared to my state of mind, which lately ain't so hot. What might the effects be on my outlook? uncahal@webtv.net


Judi C, October 29, 2002 - Hi, All this talk about dogs! Although your dogs look great Jon, I have to sing the praises of my cat. Since my back surgery she stayed on my pillow or at my side on the couch. She seems to sense when I am not doing well and will give me a furry little nudge and a purr as if to say, "I'm here with you." When my heart goes into strange, fast rhythms, I listen to her purr and concentrate on relaxing. I have found I can shortly relax my accelerated rhythym. This doesn't always work but when it does I am very grateful.
     I did get a dog from an adoption agency. He was a beautiful golden Cocker Spaniel. The first day he was home, he bit my neighbor's little girl on the face because when she saw him she threw her arms around his neck. We assumed she startled him. Well, to make a long story short, after biting 6 people, I finally called the pound to come get him. Is that a thing with Cocker Spaniels? I'll stick to cats, thank you very much.
     As for when we will die, each day is a gift to be opened and enjoyed. When we do this, the quality of our lives is so much better, the quantity of days seems greater. So much for my homemade philosophy. Halo2000@attbi.com


Jon's October 29 reply to Judi C's October 29, 2002 - Hi Judi, In my opinion, the biting is your fault - not the dog's fault. Before actually getting a dog you should learn how to choose and train a dog. For instance, a Cocker Spaniel may be a poor choice to have around kids. That you did not check out various breeds before taking in a dog is one sign that you were not serious enough about owning a dog.
     Also, letting a "new" dog get into a situation where a stranger - especially a young stranger - could throw her arms around him suddenly is irresponsible. I have a male Rottweiler who has had an entire 3rd grade class (the entire class!) descend on him like a pack of vultures - surrounding him and hugging him and reaching out and touching him all over and giggling and screaming and pushing and shoving - in a school hallway. He was as calm as a cucumber and did not even flinch, much less bite. That's because I had him trained, socialized, and prepared. That's a pet owner's job!
     There is no joy quite like owning a good dog. However, a "good" dog is made, not born. That's why my Rottweiler page goes on and on and on about how to raise the dog in the first place. When I mentioned getting an adult dog, I said, "... make sure they are already housebroken, and check for obvious discipline or behavior problems." If you do not know how to check for these problems, find someone who can and will do it properly for you.
     A dog is a high maintenance pet but he is also a partner who will defend you effectively to his death, who will see to it you never are lonely unless you choose it, and who will enrich your life every single day. If you are not willing to be a responsible pet owner, I recommend you get a cat - a low maintenance pet who demands little of your time and effort. For me, the demands of properly caring for dogs has been well worth every effort.
     That your "answer" to a misbehaving dog was to have it hauled away and probably killed says something about your attitude. That it bit people and you did not invest time and effort into learning how to prevent such behavior also speaks volumes. That dog could likely have been retrained to be a great pet! I did it with my female Rottie, who was so vicious at 8 weeks of age that my wife wanted her returned to the breeder.
     I worked with the dog for a few months at home armed with proper techniques found at the local library. At 6 months of age she was a different dog. Now, she is the unofficial mascot of our local animal hospital, where they take her behind the counter and shower her with hugs while ignoring the other customers until they have properly greeted "The Molly." Even people who are scared of Rottweilers have come to enjoy our dogs simply because they are so well adjusted - and well trained. It was pretty easy once I learned what to do.
     In case you think I am somehow a unique case, my sister-in-law asked me how to train her adult dog, and just with what I told her verbally - no books or classes - she trained her dog so well that it is a perfect dog for her, picture perfect in behavior and friendliness. On the other hand, the same dog never obeys my brother because he refuses to learn how to own a dog. It's the owner who is the problem in 49 of 50 cases of "problem dogs." That odd fiftieth case is indeed a "bad" dog, and little can be done. However, that is rare.
     I apologize for carrying on so long but I have had dogs all my life and I see lots of people blaming dogs for the owner's refusal to take some time and expend some effort learning how to have "good" dog. It obviously burns me. You can read my Rottie page to learn more. Jon.


Rieale, October 29, 2002 - Hello everyone, It's been a long time since I've posted, but I was just searching on the Net and thought I'd say hi. I just wanted to thank Jon and the others who helped me when I was first diagnosed with CHF and CM, and later when I had an ICD implanted. I was all of 21 to 22 years old and scared out of my mind. Well, I'm now 25 years old and am in perfect health. I've gone back for my graduate degree, ditched 260 pounds (190 of which were my ex-fiance), and found a man who loves me, heart condition and all.
     Basically I just wanted to post and say thank you, and also to tell others that miracles can happen. Life isn't over when you find out you have CHF. In fact, it can be quite the wake-up call. Rieale@aol.com


Joanne R, October 29, 2002 - Hi, There are people who try to convince me that sea salt is lower in sodium than other types of salt. My mama didn't raise a scientist so can anybody tell me if there is any truth to this or are these folks just pulling my chain? I figure if sea salt actually is better, I might be able to use it in bread baking.
     Also, can anyone point me to information about potassium? How much is too much? So many lower salt products (canned tomatoes, bullion, etc,...) add flavor by adding potassium, so maybe I need to include this info in my food diary. Thanks for this site Jon. Be well and God bless. muddyrds@hotmail.com


Jon's October 29 reply to Joanne R's October 29, 2002 - Hi Joanne, Sea salt is just as high in sodium as regular salt. There is one - and only one - kind of "sea" salt that may be as much as 50% lower in sodium. I am working with that company to get a sample tested in a lab here in my own town at my own expense so I can be certain. Once I am sure of the facts, I'll be passing along that info and hopefully, establishing a working relationship with that company.
     Personally, at the advice of my CHF doc, I stay away from low-sodium products that add potassium chloride. The main thing though is not so much to avoid it as to keep your intake consistent from week to week! If you eat roughly the same brands with same amount added all the time, your potassium blood levels can be reliably checked and your meds reliably adjusted. Work with your doc on this one! Jon.


Steve Bauer, October 29, 2002 - Hi Jon and everyone, This is my first post but I've been reading Jon's pages and some of the board since first diagnosed with CHF and a-fib following a stroke in May, yeah, following the stroke. They couldn't find a reason for the arrhythmia but I'm guessing it's genetic. My dad had arrhythmia too and died from CHF 8 years ago.
     I'm able to work about 6 hours a day before I get that wiped-out feeling. I have applied for partial disability both with my company's short-term disability policy and with my private disability insurance policy. I expect initial denials, especially after seeing what the hospital first wrote as far as description of my condition. I don't think anybody, including the doctors, reads anything very carefully. They just see something they recognize and jump to conclusions.
     Anyway, do you have any advice on jumping through the hoops? I'm expecting to need more procedures to try and correct the arrhythmia. Two cardioversions failed to do so for very long. Are there any red flags I should watch for? shbauer@prairienet.org


Norma's October 29 reply to Hal's October 29, 2002 - Hello Hal, I am replying to your query regarding CoQ10. I take 100 mg in the morning with breakfast, 30 mg with lunch and 100 mg with my evening meal. This pill has no effect on your moods, but it does help your heart considerably, especially in tandem with L-Carnitine. I have been class 4 since 1997 with an EF of around 20%, but can lead a fairly normal life. In fact, most people find it hard to believe anything is wrong with me, but that's on my good days!
     We drove last week from Canada to our Florida home and it only took a couple of days to get my energy back. I credit this to my alternative medication, as well as digitalis, diuretic and Cozaar. Make sure you buy a brand of CoQ10 from a reliable manufacturer, since some of the cheaper brands are not effective. Medicine Man in Georgia combines CoQ10 with L-Carnitine in one pill and I found this quite good. However, I now buy each separately from GNC, because I think the higher dose of L-Carnitine is more beneficial. Good luck, Norma. Normadroz@aol.com


Tom S' October 29 reply to Joanne R's October 29, 2002 - Hi, Being addicted to science shows on the cable channels and having nothing but time to watch them, one of the channels recently carried a documentary on salt. Right at the outset, one of the key people in the documentary pointed out that all salt is sea salt. That is to say all salt on the earth was formed by the evaporation of oceans such as the Dead Sea. There are a lot of other elements that also leech out of sea water when it is evaporated, but salt is the biggie and represents about 80% of the dissolved solids. If you are really hungry for additional knowledge about this essential element of life check out. www.saltinstitute.org/4.html. So I guess you could say all salt that is really salt is sea salt. Anything else I guess would qualify as watered down salt or even faux salt. bigheart@muchomail.com


Clara D's October 29 reply to Judi C's October 29, 2002 - Hi Judi, I loved reading your "homemade philosophy." What a beautiful attitude to bring to each day. I am glad you have a pet who is there for you and helps you relax. I think getting rid of stress is half the battle. My dog does that for me. He's a big old Lab mix who seems to think of himself as my shadow. He rarely leaves my side, especially when I'm not feeling well. Somehow he knows when I need him most! Enjoy your cat. Clara. ncdossetts@aol.com


Clara D's October 30 reply to Norma's October 29, 2002 - Hi Norma, How much L-Carnitine do you take? Does the amount taken relate in any way to the amount of CoQ10 you take? Clara. ncdossetts@aol.com


Kathy H, October 30, 2002 - Hi, I was wondering if there is someplace on the web that has a short course in how to read EKGs? It would be nice if it seemed like more than just pretty jagged peaks and valleys. kathyh@linkny.com


Scott Brown's October 30 reply to Hal's October 29, 2002 - Hi Hal, In my opinion, CoQ10 has several drawbacks: Different companies have different compositions of CoQ10; It is expensive and not covered by most health plans: There has not been enough conclusive scientific evidence to its effectiveness. Part of the problem is the testing. Who wants to give up their conventional meds to try only CoQ10? Lots of people on this site swear that CoQ10 helps them, and it might! However, it is possible the conventional meds are helping them as well.
     I will not be taking CoQ10 until it comes down in price, there is more definitive evidence, or I am deperately ill. Money is an issue for many heart patients. If money is not an issue, I do not think CoQ10 will hurt. For now, I will take my multi-vitamin. Kitchenerguy@hotmail.com


Jon's October 30 reply to Scott Brown's October 30, 2002 - Hiya Scott, No one would give up their meds to test CoQ10. No one gives up their meds to test Rx drugs. The test of an agent's effectiveness is how it works in real life and that means adding it to current therapy. That's the way drug trials are currently run for CHFers.
     I couldn't agree more that CoQ10 is too expensive. My wife takes a small dose every day that we can afford. I believe it would take a large enough dose to be very expensive to help me further, or I'd still be taking it.
     The trials abound, but like you say, there have not been the very large, strict trials Rx drugs undergo. However, the evidence is in that statins - cholesterol-lowering drugs like Zocor, Mevacor, Pravachol, Lescol, and Lipitor - deplete CoQ10 levels in the human body. A petition to the FDA has been filed to require a statement to this effect on the drugs' labeling. So I personally suggest that people taking statin drugs consider taking some CoQ10 as well if they can afford it.
     Formulations of CoQ10 are confusing. However, the actual CoQ10 in each one comes from only a handful of companies in Japan and should vary little in quality. That supplements are not FDA-controlled means you never have a guarantee that CoQ10 is in a brand to the extent that it claims, but this is true of every single supplement of any kind on the market in the USA today.
     The CoQ10 formulas with oil work best because they have fat available in the pill itself for those people who don't know how to take the tablets correctly. However, cheaper "hard" formulations work fine if you chew them with a mini-mouthful of fatty food like No Salt Added peanut butter. In my opinion, formulation is not so important if you take the kind you take properly.
     So I agree with you, Scott, that there are issues. However, I believe taking CoQ10 not only won't hurt, but will help; not just CHF but because CoQ10 is a vital part of the energy producing chain inside the human body. Jon.


Jim B, October 30, 2002 - Hi, Great news! I was just approved for my SSD. I showed up at the hearing and as I was pulling into the parking lot, my attorney called me and asked me to request another date. This is my second attorney after the first one bailed on me. Right then I decided no, I'm going through with it because I've waited too long for this day. As I waited I reviewed my file and than I prayed.
     They asked me for new evidence, which I produced as letters from my doctor stating my heart class and ejection fraction, and that in his opinion I could no longer work. The ALJ asked how I felt and I told him. He asked the vocational lady about my jobs and then he stated, "Mr. Burns, I rule in your favor." I thanked him and headed out the door.
     No lawyer means more cash for me. I wouldn't recommend not having counsel; I just was frustrated and went for it. Both lawyers thought I was too young at 38. I also have a history of alcohol abuse. I'm sober now, thank God. Don't give up. Thank God and pray. jamburns@msn.com


Jon's October 30 reply to Kathy H's October 30, 2002 - Hi Kathy, Reading EKGs ain't easy, but I have a munchkin explanation on the pacemaker page at www.chfpatients.com/implants/pacemakers.htm#ekg. Also, try urbanhealth.udmercy.edu/ekg/read.html, www.ecglibrary.com/ecghome.html, http://students.med.nyu.edu/erclub/ekgexpl0.html, and www.thedoctorslounge.4t.com/apps/astonix2.htm ( I have not personally checked that last one out!). Jon.


Dee J L, October 30, 2002 - Hi, On September 17 I was sitting watching tv when I felt an intense pain in my chest and arm. When I started sweating, my hubby called 911. After tests, I was told that I had a heart attack but not caused by plaque. A blood clot had lodged in a coronary artery which, I'm told, causes the same result as plaque. I'm now on high doses of Coumadin plus 81mg of aspirin per day. It was lucky that the clot didn't cause a stroke.
     About sleeping. I haven't had a good night's sleep for years. The only thing that helps is taking 0.5mg of Atavan before bedtime. I'm up every 2 hours on average even with the Atavan. I listen to my hubby snore the night away - he never wakes up until the alarm goes off. It's very frustrating, to say the least.
     On CoQ10, I've been taking it for 2 months and did notice an increase in energy before the heart attack. Right now I'm still recovering so it's not possible to gauge the efficacy of the CoQ10. I'll report in another couple of months.
     There are 3 doctors in the cardio practice I go to and each has a different idea of what treatment I should have, so I've decided to change doctors. Does anyone know of a good HCM/CHF specialist in the Columbus, Ohio area? Dee JL. gardengirl33@juno.com


Norma's October 30 reply to Clara D's October 30, 2002 - Hi Clara, I take 500mg of L-Carnitine every morning, along with 100mg of CoQ10. Unfortunately, it is quite expensive, but GNC has a plan that gives you 2 bottles of 90 pills each for around $48. One bottle alone would cost around $42. By purchasing 2 bottles, you get a 6-month supply for practically the same price. L-Carnitine is not available in Canada for any Canadian readers of this site. Keep well, Norma. Normadroz@aol.com


Norma's October 30 reply to Scott Brown's October 30, 2002 - Dear Scott, My cardiologist tells me that in the near future, he and his colleagues will be recommending CoQ10 to their heart failure patients since he has seen how effective it is in his practice. It is true that it is expensive and this is a drawback for many. I would never suggest that anyone leave off their prescription medications to try alternative medicine. If you read my recent message, you will note I take CoQ10 in conjunction with prescription medications and other alternative medicines.
     I read Dr. Sinatra's Health Letter each month and was pleased to see he is recommending Hawthorne to his heart failure patients, something I have been taking for a few years now; but I also have great faith in digitalis and Cozaar. Be well, Norma. normadroz@aol.com


Mel G's October 30 reply to Kathy H's October 30, 2002 - Hi Kathy, Like you, I wondered about the ECG readings and did a little looking around the web. I found it all very interesting, but some of it is just incomprehensible unless you've studied for a long time. At least I know enough now to tell the docs not to worry about my slightly downward sloping ST segment depression, and my inverted T waves! In addition to Jon's references, if you're up for reading some more, here are 3 of the best sites I found while I was looking. Have fun.
www.fpnotebook.com/CV53.htm
www.ecglibrary.com/ecgurls.html
www-medlib.med.utah.edu/kw/ecg/index.html
     All the best, Melanie. falmouth@bigpond.com


Mel G's October 30 reply to Jon's October 30, 2002 - Hi Jon, The Baker Medical Research Institute at our large cardiovascular hospital (Alfred Baker Medical Unit) in Melbourne, Australia has completed a 3-year clinical trial using CoQ10. This is also the hospital where they are undertaking successful clinical trials of the VentrAssist artificial heart to ready the device for mainstream use next year. Under their research pages at www.baker.edu.au/html/research_staff.html, and search for "coenzyme" or look at the "Cardiac Surgical Research Unit" section. I find all their cardiac research very interesting. Info on the permanent VAD is at www.ventracor.com.
     On an anecdotal note, since starting 150mg CoQ10 in a base of salmon and Flaxseed oil 2 months ago, I have more than doubled my energy level, walking farther at a better pace, and have even started doing laps in the pool. I feel terrific and just had my EF measured by MUGA at an impressive 57%. This is up from 43% in June, which was a great increase from 21% in November of last year. It is obvious to me that the proper meds are working well: Coreg, Tritace, Aldactone, Digoxin, Lasix, and rather than say the CoQ10 is responsible for my better health, I think it is just helping me feel better. :-) Whatever the reason, I'm not changing anything just now! All the best, Melanie. falmouth@bigpond.com


Ben B, October 30, 2002 - Hi, This is a long story with sort of an unrelated question. I am currently being reviewed by both SSA and my private insurer for benefits. When approved, my EF was about 15 to 20% and my heart size about 6.8 cm. My heart size is now about 6 cm and my EF somewhere between 35 and 45%. Recently I had a cath during which my heart went very briefly into tachycardia during the EF measurement so they couldn't get an accurate read but everyone is interpreting this as mild to moderate dysfunction.
     I am already pretty sure my private insurer is going to cut me off and I am thinking SSA may do the same. It seems like they send me another form almost every other day. Recently I got a "physical assessment" form which states the doctor is supposed to fill it out based on "objective medical results" without taking into account my statements to him.
     He says he can't do it because if he did he'd have to say I could probably do a job because most of his patients with my objective findings (or worse) are working. The truth is, he really thinks I could work and I'm not sure he's wrong. I guess I could ask for a Vo2 test but I suspect it's around 20.
     My questions are: What do you think will happen if he just doesn't submit the physyical assessment form? He already didn't submit it once but the SSA is trying to get me hassle him. Apparently in my state they are prohibited from calling his office. Can I just ask the SSA to send me to their doctor? Yes, I know I could find another doctor to say I'm disabled, based on my input but that seems a little fraudulent. Anyway, I am sort of accepting the fact I'm going to get booted and am looking for work.
     The other question I have is, where did anyone see that SSA benefits continue for 6 months after denial (based on benefits held back)? I can't find it anywhere official and the clerk handling my case seems baffled by the question. She just launches into something about continuing benefits during appeal. bdbrinkman@juno.com


Jean, October 31, 2002 - Hi, My internist stopped my Prinivil and Coreg, and now I am experiencing a rapid heart rate. I was diagnosed with idiopathic CHF in January of 1999 and was on medication until recently. drrusch@ties.k12.mn.us


Jon's October 31 reply to Jean's October 31, 2002 - Hi Jean, Get a second opinion from a CHF specialist now. This is a sure way to go back into CHF! The official CHF Treatment Guidelines state that ACE inhibitors should never be stopped in people who have had CHF. Most CHF docs also clearly state that beta-blockers likewise should never be stopped although doses can be reduced. Your doctor is not on the ball and he could hurt you! Jon.


Craig B's October 31 reply to Ben B's October 30, 2002 - Hi all, Don't you think the whole benefits scheme both there in the US and here in Australia needs a serious set of guidelines drawn up for sufferers of heart conditions? Why does it seem that so many sufferers have so much trouble being recognized as having a problem serious enough to warrant non-work? Okay, I'll be the first to admit there are an awful lot of people with heart conditions who in fact do work. There are also a lot that don't or can't work. It just seems that officials seem so vague when it comes to CHF.
     I have just turned 40 and honestly, the thought of being on a government support system till I retire and then getting an aged pension isn't real hot! After all, it is wonderful that I am being supported at all but it certainly isn't in the life style to which I had become accustomed! The thing is, I couldn't work an 8 hour job in a fit! After being up for about 3 hours I find I am needing rest. I have all sorts of side effects from my meds, I get really tired, very depressed and just feel hopeless some days.
     It seems like people don't believe you or that you have to defend your situation. I just don't understand it. I feel sorry for the people that have huge battles to get and keep their benefits. I was lucky here and I hope I stay lucky! bayce@optusnet.com.au


Jacky, October 31, 2002 - Hi everyone, Today I had my first appointment with a local cardiologist and discovered he is part of the hospital CHF clinic! What a difference from the electrophysiologist I have been driving 70 miles to see for 3 years. The new doc said I was not being treated aggressively enough and added Coreg to the amiodarone, Diovan, Lipitor, Synthroid and aspirin. He will raise my Diovan dosage when we see how I tolerate Coreg. Thank you all for the advice you gave me regarding the CHF specialist. Jackymwb@aol.com


Giorg, October 31, 2002 - Hi, People have been talking about CoQ10 since the 1980s, no big trials proved it is effective. I think it is enough. Moreover, once we have reached class one or class 2 thanks to ACE inhibitors and beta-blockers, I think our point is to live longer, not to feel better. Don' t you think that supplements like CoQ10 and taurine might make us feel better but push our damaged heart too far? We need to rest, not to run. Waiting for a miraculous drug, therapy, or surgery. giorgclunei@hotmail.com


Jim B, October 31, 2002 - Hi, A good place to get supplements is Puritan's Pride at www.puritan.com or mail order. They always have a buy-one-get-one-free or a buy-two-get-three deal. I always get my taurine and CoQ10 from them. Does anyone know how long it will take to receive my first check from SSA? Thanks and good luck Ben. I'll pray for you. jamburns@msn.com


Jon's October 31 reply to Ben B's October 30, 2002 - Hi Ben, I got the waiting period money used for back to work straight from an SSA rep at the nearest district office a few years back.
     I went back last night and spent an hour looking at current Social Security documents. They have radically revamped their back-to-work programs. According to their vague online information, you should receive Disability benefits for at least 9 months after going back to work no matter how much you earn, but you have to play it by the book so work with them very closely to be sure you satisfy all their requirements.
     I could not find specific data on this issue in the SSD POM or Handbook and that bothers me. If anyone has specifics on the back-to-work benefit rules, please e-mail me. Jon.


Jon's October 31 reply to Craig B's October 25, 2002 - Hi Craig, I am looking up eplerenone info but may not find much. I'll let you know here. If trials are still ongoing, the info would be too pricey. Jon.


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

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