The paperwork never ends The Archives
November 1-15, 1999 Archive Index CHFpatients.com

Kathleen Duffy 11-1     heart rhythm & Dallas doctors questions
 
Sara's 11-1 reply to Ginger's 10-31     recipes for chemo recipients
 
Anita's 11-1 reply to Ginger's 10-29     Jesus maintains me too
 
Jon's 11-1 reply to Anita's 11-1     He keeps me going
 
Dale P. Burt 11-1     have viral cardiomyopathy, questions
 
Tom S' 11-1 reply to Dale P. Burt's 11-1     longevity with CHF
 
Donna 11-1     thanks, doing it right really helps
 
Margaret's 11-1 reply to Jon's 10-30     that pillow arrangement is great!
 
Bill Stevenson 11-2     numbness questions
 
Diana's 11-2 reply to Dorothy's 10-28     diet & exercise
 
Sharon J W 11-2     it's been a rough week
 
Sara 11-2     illness' cause, coping, Dale & myocarditis
 
Robin W 11-2     heart transplant recipient update
 
Leland Y 11-2     part of good CHF program
 
Lee R's 11-2 reply to Kathleen D's 11-1     heart rhythms, heart docs
 
Joe S' 11-2 reply to Jon's 11-1     illness' cause
 
Kay's 11-3 reply to Dale P. Burt's 11-2     my CM is viral also & more
 
LeeAnn D 11-3     about that gout,...
 
Lydia Moore 11-3     RLS, burdens, pillows & more
 
Debbie 11-4     virus, EF & progression questions
 
Jon's 11-4 reply to Debbie's 11-4     EF, progression experience
 
Linda 11-4     CHF progression & results
 
Ben B's 11-4 reply to Debbie's 11-4     all those numbers & more
 
Paula's 11-4 reply to Jon's 11-4     Holter monitor questions & adjusting to CHF
 
Janet 11-4     Life magazine article, upcoming test
 
Cindy M's 11-4 reply to Jon's 11-4     update, numbers
 
Tom S' 11-4 reply to Debbie's 11-4     CHF experiences
 
Debbie 11-5     Vo2max questions, coping & more
 
Jon's 11-5 reply to Debbie's 11-5     Vo2max info, coping
 
Gus R's 11-6 reply to Paula's 11-4     adjusting to having CHF
 
Ranelle's 11-6 reply to Jon's 11-4     CHF experience
 
Carolann S 11-6     thanks Jon & more
 
Jon's 11-6 reply to Carolann S' 11-6     give it a shot
 
Lee R's 11-7 reply to Carolann S' 11-6     Web pages, depression, meds & more
 
Jon's 11-7 reply to Debbie's 11-5     more on Vo2max from Gino
 
Bill C 11-7     update, new heart doc & more
 
Rebecca 11-7     work as a nurse, have questions
 
Ruth P's 11-7 reply to Ranelle's 11-6     CHARM study, Coreg & more
 
Bill M 11-8     update
 
Debbie 11-8     thx for Vo2max info, one more question
 
Carolann S' 11-8 reply to Lee R's 11-7     depression, coping with low blood pressure
 
Joe S 11-8     depression, meds & more
 
Dan Lewis 11-8     Cozaar vs Avapro question & more
 
Jon's 11-8 reply to Dan Lewis' 11-8     Avapro
 
Kathryn 11-8     could you e-mail my son?
 
Marty's 11-8 reply to Carolann S' 11-8     living with low BP
 
Jay Q's 11-8 reply to Carolann S' 11-8     low BP & heart meds
 
Heather Saunders' 11-9 reply to Carolyn S' 11-8     intro, is there any hope?
 
Jon's 11-9 reply to Heather Saunders' 11-9     hope abounds
 
Roger H 11-9     new Web site, high BP questions
 
Pat D's 11-9 reply to Dan Lewis' 11-8     Cozaar vs Avapro
 
Jon 11-9     thanks to everyone
 
Rick M's 11-9 reply to Heather Saunders' 11-9     hope & coping
 
Pat L's 11-9 reply to Jon's 11-9     congrats
 
Susie O's 11-10 reply to Heather Saunders' 11-9     specialist is a good idea
 
Susie O 11-10     Url for walkers
 
Joe S' 11-10 reply to Heather Saunders' 11-9     coping, expert doctors & more
 
Donald Gazzaniga 11-10     Marine Corps' birthday
 
Jana B 11-10     bad ER incident - questions
 
Jon's 11-10 reply to Jana B's 11-10     lodging complaints against doctors
 
Lydia Moore's 11-10     Coreg titration & sleep questions
 
Jon's 11-10 reply to Lydia Moore's 11-10     sleep
 
Barbara P J's 11-11 reply to Lydia Moore's 11-10     Coreg dose titration
 
Carol O's 11-11 reply to Carolann S' 11-8     low BP & meds
 
Leeann D 11-11     my CHF experiences
 
Dan's 11-11 reply to Lydia Moore's 11-10     Coreg dose titration
 
Ben B's 11-11 reply to Jana B's 11-10     what is a UA & UTI?
 
Lydia Moore's 11-12 reply to Barbara P J's 11-10     thank you, Coreg info welcome
 
Eli Alroy 11-13     gene therapy questions
 
Jean 11-13     meds questions
 
Sally 11-13     familial cardiomyopathy
 
Jon's 11-13 reply to Sally's 11-13     familial cardiomyopathy Url
 
Jay Q's 11-14 reply to Lydia Moore's 11-12     muscle soreness & meds
 
Joy R 11-14     seek new drug name
 
Tom S 11-14     Internet phone service
 
Victor D 11-14     intro
 
Jana B's 11-14 reply to Sally's 11-13     familial cardiomyopathy
 
Phyllis A 11-15     update & prayer request
 
Robin Lynn 11-15     update & more
 
Phyllis W 11-15     magnets question
 
Bev T's 11-15 reply to Bill C's 11-7     doctors & their dictation
 
Bev T's 11-15 reply to Bill M's 11-8     specialists


Kathleen Duffy, November 1, 1999 - Hi, I need help. I was diagnosed last year with CHF. I have an EF of 45% and moderately severe mitral regurgitation. I take Vasotec, Lanoxin and Coreg, and really do not have too many symptoms. Sometimes my ankles are swollen and sometimes I have shortness of breath, but my doctor doesn't think I'm doing too badly. In the past week, I have noticed that my heartbeat periodically slows for a second and then goes back to normal. It frightens me a little. Does anyone know what it means? I know I should talk to my cardiologist, but he doesn't even remember me from visit to visit. I am a 44 year old female who has gained 40lbs since last year and he doesn't even comment on that. I really would like to change doctors but I have no idea where to go. I live in Dallas so if someone knows a good one out there, let me know. Thanks. ktduffy1@aol.com


Sara's November 1 reply to Ginger's October 31, 1999 - Hi Ginger, My friend had cancer of the pancreas and the doctor told him he had about 3 months to live. His wife fixed very small meals that had mild aroma as that would cut his appetite, and left fruit and nibbles around so he could pick, but what really helped was a nurse friend told his wife to fix a "cocktail" three times a day made of an apple,and 2 veggies. I don't remember which ones, but they squeezed it on a juicer and he lived 18 months more. If I can get the exact ingredients, I will send it to you but I don't think it matters. The apple is to sweeten the drink. Who knows if it really helped or did God put His hand into it. Lots of love and good health to all. Sara. ssunny20853@aol.com


Anita's November 1 reply to Jon's October 29, 1999 - Hi Jon, I just wanted to say how much I appreciate your comments on handing over our burdens to Jesus. He is so very faithful to us. I don't understand why He has chosen to give this condition to us, but He has a reason for everything and I for one know that He will never put any more on me than I can handle. I've asked so often, "Why me?" But, why not me? I know I'm in the hands of the Lord and what better place to be? Amaef@aol.com


Jon's November 1 reply to Anita's November 1, 1999 - Howdy-doo Anita, He's what gets me through my CHF, but in my case, I don't believe He had any part in my getting it at all. Sometimes, things just happen or we bring them on ourselves. Once I did get sick, He put me to good use though, that's for sure! <g> Jon.


Dale P. Burt, November 1, 1999 - Hi, I am glad I finally came across this page. In April, 1998, I contracted a viral infection that went into my heart and enlarged it nearly 3.5 times normal size. The virus is called Coxsackie virus. My ejection fraction had gone down to 3%. My oxygen saturation was 84% and dropping. I ended up in the hospital for approximately 9 days in CCU. I was being prepped for a heart transplant at University of Washington Heart Failure Clinic. Unfortunately (or fortunately), they were unable to transport me via Medivac helicopter. I was too unstable. The hospital staff started the UW's protocol for transplant if they could stabilize me. Over the next few days, the readings started the most slowest climb up. When I was discharged from the hospital, my ejection fraction was 12%. I am currently still a participating patient at the Heart Failure clinic at the UW, just in case I need a transplant in the future. I have been told that I have congestive heart failure, cardiomyopathy and myocarditis. My question, has anyone else had this virus and if so, what if any chances are there for a long life? raedale@snohomish.net


Tom S' November 1 reply to Dale P. Burt's November 1, 1999 - Hi, If it's any consolation or indication, I was admitted to my local hospital's ICU four years ago with the very same diagnosis and prognosis. My EF at the time was 15 and I couldn't tell you much about anything else other than I was extremely tired and found it very difficult to breathe. My legs were swollen nearly 3 times normal diameter and my eldest daughters (18 and 23 at the time) were told I probably would not make it out of the hospital and that if I went home, I probably would die within a week. Again, that was 4 years ago.
     While I am still fatigued, I do manage to run a household with 5 children, sometimes 7, and sometimes as many as 3 grandchildren. My wife works nearly full time and I am on Disability. I figured that something a bit more powerful than me has a say in how long I hang around and thus far I would suspect He has had a large part in my longevity. Sit back, relax and enjoy the ride. It could be longer than you think. biggerbhoy@hotmail.com


Donna, November 1, 1999 - Hello all, I just wanted to say thank you Jon, for this Web site. It has made me so much more aware about all the things a person with CHF needs to know. I was diagnosed in June of this year, I think my EF was between 10% and 15% at the time. I'm feeling much better now. I'm on a low sodium diet, limited fluid intake, and all the normal meds including Coreg. I'm finally up to 50mg Coreg a day. I still do get tired, especially in the evenings. I just saw my regular cardiologist and he said I'm back to a class 1. I was a class 4 when he first saw me. I'm also walking 2 miles everyday with my 2 black Labradors, Madison and Ben. I thank God for every day I have. I will keep you in my prayers, Jon. I do hope you are feeling better. Donna. dzak@vet.upenn.edu


Margaret's November 1 reply to Jon's October 30, 1999 - Hi, The pillow comments were wonderful. I spend a lot of time sliding down the bed, getting breathless, and propping myself up again. I am now sleepng better with my pillows in your formation. Brilliant! Maggie. micmag@mistral.co.uk


Bill Stevenson, November 2, 1999 - Hi, I am now getting numbness in my hands. I can't take potassium and only take Lasix as needed. I have dilated cardiomyopathy and I have an ejection fraction of 20%. I'm on Coreg, digoxin, aspirin, avapro and Lasix as needed. I wonder if anybody else has this problem. It is always in my left hand by days and it's in both hands and my face. Jesus is my father. sonofsteven@prodigy.net


Diana's November 2 reply to Dorothy's October 28, 1999 - Hi, I found out I had CHF a couple of years ago. I eat a lot of green vegetables along with fish, meat and fruit but it's the greens that seem to do the most good. I think they oxygenate the blood. Also, it helps me to exercise, especially some aerobics; maybe 10 minutes of aerobics, then other exercise. I follow the diet recommended by Dr. Peter D'Adamo in his book "Eat Right For Your Type." I also take CoQ10. I am very tired though, but seem to be hanging in there. DianaNatural@aol.com


Sharon J W, November 2, 1999 - Dear Jon, It's a tough week. Change my "perpetual optimism" to "partial optimism" on the Me Too! page. Kind thoughts to everyone. delwill@gateway.net


Sara, November 2, 1999 - Hi friends, In my opinion, I think we tend to put too much blame on God for our problems, but they are man-made. He allowed us to live at birth and gave us a free will to follow Him, and I feel He still has a plan for those whom He has allowed to survive. I cheated death 3 times and I know I am still needed here on earth.
     Dale, I had myocarditis about 30 years ago. They told me if I didn't have bed rest for a year, I could die. Well, here I am. I have had several critical episodes over the years, so I guess I still have His work to do. Best of luck and good health to all. Sara. ssunny20853@aol.com


Robin W, November 2, 1999 - Hello everybody, I haven't posted or read in awhile and I wanted to drop you all a quick note. I am doing really well and for the first time last week, my biopsy showed a rejection factor of zero. I was thrilled, to say the least. It's hard to believe it's been 4 months since my transplant. I feel better than I have in years. For anyone out there on the list or in the process, stick with it. It's really scary and at times you may not think it's the right thing to do, but I am living proof that it really works. There are drawbacks as well, but for me the positives far outweigh the negatives. As always, if anyone has any questions about transplant or just wants to talk, e-mail me. I hope everyone is feeling well. Robin W. jwilson@nb.com


Leland Y, November 2, 1999 - Hi, I was really impressed with Kaiser today. The Rehab department scheduled me to meet with a CHF advisor today. Her name is Dr. Shelly Rush, a 1995 graduate of USC pharmacy school. She went over my whole chart, advised, asked, and doled out anything and everything you ever wanted to know (or have read about here at Jon's). She went over my medication list and made suggestions such ask, if using therapeutic vitamins, be sure that vitamin K is not on the list (I never even looked at that part of the vitamin label). Dr Rush went over the sodium concentrations of common foods and made sure of compliance. She handed out forms for keeping track of weight gain and loss. We went over support groups and places to go for help. She issued an emergency phone number in the event of any questions or doubts. Tomorrow, I go to a 3 part, 2 hour meeting which will cover diet, meds and general information. The meetings will be given by a nutritionist, another pharmacist and an RN for the third 2 hour meeting. Dr Rush covered a lot of ground, and thoroghly. I have nothing but gratitude about how well I have been treated at Kaiser. At the same time, I gave Kaiser the Url of Jon's sites. I also gave Kaiser the info about your diets, The Manual and the Site Index. I told Kaiser how Jon's site "educated" me during my first 3 months - the most critical months after becoming stricken - to allay fears of the unknown. I really have a lot to be thankful for. I hope everyone can see the silver lining in dark clouds - He is there. Luv and salutations. Leland. LLYEE@surfside.net


Lee R's November 2 reply to Kathleen D's November 1, 1999 - Hi Kathleen, I understand that the rhythms of the heart can be upsetting. Most of the time it is benign. However, a call to your cardiologist (or in your case, a new cardiologist) would be a good idea. They may want to use a holter monitor to see what is going on. Do you have any dizziness or lightheadedness? Are you on a diuretic? I hope you can find a doctor you're comfortable with. That is so important. Feel better, Lee. LeeRoush@aol.com


Joe S' November 2 reply to Jon's November 1, 1999 - Hi Jon, Amen. I agree completely that most of the physical and other type of afflictions we have, we bring on ourselves. God is there to see us through them and rarely if ever causes them. Joe S. JES@StevensonLighting.com


Kay's November 3 reply to Dale P. Burt's November 2, 1999 - Hi, It is interesting to read about your heart problems with the viral infection. I also have had cardiomyopathy for 2 years and it seems a viral infection caused this also. Blessings to you friend, and thank you Jon for this very comforting Web page I have come across. This is a scary situation at times with the CHF and not breathing well. Smiles to all. Kay. kendrick@zianet.com


LeeAnn D, November 3, 1999 - Hi Guys, My dad has gout and "gouty arthritis." An easy-on-the-kidney remedy he takes is black cherries. He munches on dried ones or drinks a concentrated black cherry juice. Black cherries neutralize uric acid. Of course, I'm not recommending you go off meds, although my dad did eventually, but eating black cherries absolutely won't hurt you at all. Try it! LeeAnn in Phoenix, age 39, EF 30. Yep, I had a birthday. I went around like an old person saying, "Made it another year" just like my grandpa does. Of course, he's 92! ddavis1057@aol.com


Lydia Moore, November 3, 1999 - Hi Jon, I hope today is finding you feeling better. First I want to thank you for posting my message about looking for Jo and thanks to you, we have connected. Thank you also for the feedback on my questions and the pillow advice, which works real well. As I told you, I also have RLS and it is a lot of why I have a hard time sleeping. I had an appointment with my cardiologist and he said that drinking tonic water relieves the symptoms quite a bit. He said it's the quinine in it. Well, I tried it, and lo and behold it was much better. I fell asleep much easier. I thought I would pass this on to you and anyone else that suffers from this added discomfort. By the way, I don't believe for one minute that God had anything to do with giving us this condition. He loves us too much. He did however, provide a way for us to cope with it and in all the years of my life, He has never given me more than I could handle. I also believe He allows these things to happen for our spiritual growth. I love Jesus. I couldn't live without Him. Thank you again and God bless, Lydia Moore. gemini49z@yahoo.com


Debbie, November 4, 1999 - Hi, I'm new to post on your site. I'm 44 years old and live in Florida. I've been reading this site for a couple of months. Thanks so much Jon, for all of the info. I've learned more from you than anywhere else! I also was diagnosed with DCM in June of this year that was supposedly caused by a viral infection. I'm taking Lasix, Zestril and Atenelol, on a low sodium diet and regular walking program. My EF was originally diagnosed at 30 and my last EF in September fluctuated between 30 and 35. My cardiologist was optimistic in the fact that I hadn't gone backwards but was also very guarded in a future prognosis. I'm sure they really just don't know for sure. I'm scheduled to go back in December. My question is this, when patients with DCM contracted it from a virus, did they know it at the time or was it more like a cold or flu that just settled into the heart? I really can't recall anything other than the normal cold and flu season. I'd also like to know on average how long does it take to get from one EF to another? Either upward or downward?
     Dale and Kay, you both mentioned you've had this for a couple of years. What is your current EF? This is a really scary thing and the progress seems to be very, very slow. Thanks to all! Biloxibud@aol.com


Jon's November 4 reply to Debbie's November 4, 1999 - Howdy-doo, Debbie. I had a very nasty case of flu a month or so before my CHF hit me hard. It lasted about a week and was the usual overall flu, with nothing to indicate it might cause me permanent problems. Of course, there's no guarantee that caused my DCM, either. ;-)
     For what it's worth (I'd love to hear from others their experience), I've had CHF for 4 years, 11 months and a few days - since diagnosis. It's easy for me to remember because I was thrown in the hospital on Thanksgiving day. My EF has gone from 13 to 45, but my Vo2max has gone from high-normal to 13.5% - transplant level. So one prime measure of heart health has gone up while the other went down. Go figure. My own personal belief - with no medical studies to support it - is that each EF reading is relatively unimportant except for that first one. After that, it's the upward, downward, or stable trend that counts. Restoration of heart function, when it happens, can be weird. Progress may be very slow and steady or it may be nonexistent and then, bam! you're a lot better. I have no idea why. Jon.


Linda, November 4, 1999 - Hi, I was hospitalized with pnuemonia on May 5, 1998. On August 27, 1998, I was back in the hospital unable to breathe. It's the night I was diagnosed with DCM. So it's been 1 year 2 months and 7 days. My EF has steadily increased from 19% to 58% over that time. Luckily, my Vo2max improved after the fluid got off my lungs and has stayed in the low normal range. contessa@prodigy.net


Ben B's November 4 reply to Debbie's November 4, 1999 - Hi, I would really stop worrying about this EF thing. My experience is that it means almost nothing. If it were to drop off to 10 or 15%, then you might have some concern. My EF is lower than a lot of people, and has been for for 3 years, but I feel pretty good except when I dwell on that stupid inaccurate number. As far as a virus as cause of your CHF, in many cases I think this is doctor talk for "I don't know what caused your condition." I was told the same thing by my doc, even though he did nothing to check for it. When I check my records it appears nowhere. It just says "Non-ischemic cardiomyopathy." This may not be the case for you, but I don't know if it makes any difference. bdbrinkman@juno.com


Paula's November 4 reply to Jon's November 4, 1999 - Hello, My name is Paula and I have had cardiomyopathy for two years now. I am new to the Internet so please be patient with me. How I wish I had access to this before when I was newly diagnosed, this is great! I have a question. I have an event monitor which I have to wear for the next 4 weeks because I have had increasingly severe periods of dizziness and the holter revealed nothing but my usual irregular heartbeats. Can anyone offer any practical suggestions on how to deal with this event monitor? I know in the scheme of things it is a minor problem, but I am tired of this.
     Also, I was diagnosed November 9, 1997, and last November I was burned out when one of the apartments in the complex I was in caught fire, taking the rest of the apartments with it, so I am sure all of this is playing into how I feel. I am normally a happy person, but I don't feel quite so now. Is this normal after 2 years to feel this way? Should I not be adjusted to this by now? Thank you so much, I hate being a bother. I look forward to hearing from you Jon, and others. I am so grateful to know support exists. Thank you, Paula. ppinksto@gis.net


Janet, November 4, 1999 - Hi, I did pick up the latest issure of Life and it is quite an interesting article. It would be suggested reading for any family members or friends who are having a difficult time understanding the whole process of transplantation. I had my latest echo done and there was no change for the better. I am having another test called pharmacologic myocardial perfusion imaging. I will go and read in this site the true "skinny" from those who have it done in the past instead of relying on those pamphlets they hand out. Thank you Jon, for giving me the resources to do this! Janet. ladycow123@aol.com


Cindy M's November 4 reply to Jon's November 4, 1999 - Hi All, I've been meaning to post my latest stats, and since Jon and Debbie asked, here goes. I had a nasty flu that lasted about a week, one month prior to the onset of my CHF symptoms. That was in May of 1998. I was correctly diagnosed with Idiopathic Dilated Cardiomyopthy on August 19, 1998, which I remember well because it was the day before my youngest son's sixth birthday. My EF at diagnosis was 10%. My EF is now about 35-40%. My Vo2max has gone from 17% to 24%. For what it's worth, I agree with Jon on his assessment of how EF seems to fluctuate, but there is usually a trend that you can see. Best to all, Cindy M. cleighmc@aol.com


Tom S' November 4 reply to Debbie's November 4, 1999 - Hi, In my case for nearly 8 years, I experienced what seemed to be a bi-annual bout of flu-like symptoms with extreme fatigue. I was self-employed so taking a few days off, to stay basically bedridden, was not a problem because I had no boss to answer to. When I discussed these episodes with a doctor, it was diagnosed as being "Yuppie flu." I also experienced periodic burning sensations in my chest which were at times debilitating, and I even thought at the time it felt like a muscle being stretched to the point of pain. That turned out to be an accurate appraisal on my part. Having been a heavy smoker, I attributed the pain to "seared" lungs and promised to quit smoking, which I eventually did prior to the onset of the really bad CHF symptoms. The first was rather innocuous and involved a large bubble (blister) on the back of my left hand. The fluid was very deep and probably could have been drained, but I let it go as being an anomaly.
     By that time I was also starting to experience shortness of breath and a rasping in my throat that sounded like fluid buildup. Lying flat was difficult and I found myself sleeping sitting up on a regular basis. I never slept well during that period, which lasted about 2 years. I was so busy with my business and career, and a rather large family, that I didn't take time to see a specialist. It was not until my - how do you put it delicately - left testicle became enlarged by a factor of about 3-4 times normal size that I decided it was time to see a doctor. I made the mistake of seeing a urologist rather than a cardiologist and while he detected a "possible" heart arrhythmia, he suggested a surgical solution to my enlarged male problem which I immediately rejected.
     Later I was to learn that this was one of the classic symptoms of congestive heart failure and while he was a urologist, he should have known the signs and symptoms and referred me to a cardiologist. About 6 months later I could no longer sleep, and both my right and left leg blew up 2-3 times normal size. That was 4 years ago and I am still around. Just about everybody that suffers from CHF has a different tale to tell how they arrived there, but it's how well we cope and live our daily lives with CHF that really counts. I for one just keep plodding along and savor the time I have been given for the tasks I have been elected to perform. Many things that at one time bothered us seem to pale into insignificance when one is confronted with his own mortality. We are the fortunate few who are allowed that unique perspective. biggerbhoy@hotmail.com


Debbie, November 5, 1999 - Hi and thanks Jon and everyone else for the info. Now I ask, what is the VO2max level? I understand EF and what it means to the heart but I thought that was the number that was used to measure progress or decline in one's condition. I've also learned from the posts here that the EF may fluctuate a lot. I do still work full-time but I'm pretty tired most of the time. I also experience shortness of breath very frequently. It's sometimes very difficult to understand what's really going on inside. I have to remember my faith each and every day, and know that I need to really appreciate every day that I feel well. This has been a very tough ordeal. I have a wonderful husband, two grown children and a beautiful 16 month old grandchild who give me incentive to get through the bad days. I'm determined that baby needs her "nanny" here. Thanks again for the info. Biloxibud@aol.com


Jon's November 5 reply to Debbie's November 5, 1999 - Yep, this illness and its results can be hard to figure out, alright. You can read about the Vo2max test here. There is a brief explanation of what it means in the introduction to the Vo2max page itself. Let me know any questions you have after reading it and I'll do my best to answer. I also have this from our friendly neighborhood CHF cardiologist Gino, about the test and its meaning.

     "O2 (Oxygen) is the 'fire' that the body's cells use to 'burn' the fuel (sugar, lipids, protein) in order to produce energy for their function (for the skeletal muscles, the function is Work). O2 is also consumed at rest. The amount required is proportionate to the work performed. The V means 'how much' so VO2 is: 'how much oxygen' the muscles consume to perform the work (we measure the work with Watts or Mets on bicycle or treadmill). Oxygen is taken in by the lungs and transferred to the muscles by the heart. The VO2 test helps measure the lung's work so we can determine if shortness of breath is caused by heart failure or lung failure."

     By the way guys, Gino has been recently published. He's moving up in the world of heart failure cardiology - a tough thing to do these days!
     About coping, that's always hard when a chronic illness just plain wears you out before you even get started. That full-time job may not be possible much longer but I say keep it as long as you are able.
     Faith is the only thing that keeps me going. My wife and I agree that I would have become clinically depressed, practically comatose and would now be dead without the uplifting I get every day from Jesus Christ. Just recently, when I was becoming overwhelmed by running this site, and trying to keep all the CHF info up to date year after year, He re-energized me not just to keep up, but also to upgrade every single page. I've been at it for a month now, with excellent results, I think. (FWIW, He guided me to Psalm 142 - give it a read)
     My point is - I can't do it alone. I'm not sure anyone can. Your source of strength is your choice, but consider Jesus Christ; He won't let you down. Also turn to family, friends, the activities you can still enjoy, whatever suits you best. Face each day like it's your last but look forward to tomorrow. And always reach out, instead of turning inward. I'm starting to sound like a Hallmark card, so I'm signing off! ;-) Jon.


Gus R's November 6 reply to Paula's November 4, 1999 - Hi Paula, I hoped someone would give you a good answer to your "Should I not be adjusted to this by now?" question, but since none was posted today, I'll give you my thoughts on it. I don't think I will ever adjust to it completely. I do much better now than at first but I still have to be careful not to feel sorry for myself at times. Sometimes I just plain get mad when I try to do something that used to be so simple and easy, and now is a major project, if not impossible. For example, some lowlife ran over my mailbox this week and I decided to replace it myself. I felt like I had really accomplished something when it was done, but it took 2 days this time instead of the 2-3 hours it took to put it up originally. It does get better as time goes by but for me at least, it's hard not to compare what is with what was. By the way, I'm at 7 years, 2 months, and 5 days, but who's counting. :-) Best wishes to all, Gus R. gus13@net66.com


Ranelle's November 6 reply to Jon's November 4, 1999 - Hello everyone, My experience with CHF is similar to many of you who have replied. The week after Christmas, 1998, I had a very bad cold with cough. I did not go to the doctor, I just did the over the counter usual cold and flu remedies and got better, but I never really recovered. In May, my breathing and cough became worse and I was treated for bronchitis. I got better for a few days and then I spent a night coughing and unable to breathe except when sitting up. When I called my primary care physician's office, they sent me to the emergency room, thankfully. I was diagnosed with dilatd nonischemic cardiomyopathy, most likely viral in etiology. I had an EF of 10% and stayed in the hospital 4 days. I am taking metoprolol, Lasix, potassium, Coumadin and Prinivil. I had another echo the middle of June and my EF was not significantly better, so I had a Vo2max in August and scored a 16. I was very thankful for that! Since May, I have gradually gotten better and better until October 17.
     I had decided to participate in the CHARM Trial and took my first Atacand (or placebo) tablet that day. Almost immediately (within 2 hours), I felt awful. Needless to say, I pulled out of the study. For 2 weeks I felt pretty bad. When I went back to the doctor, he did another echo and said it was not any better, and sent me in for another Vo2max. That turned out to be better than the previous one (20 this time). He upped my metoprolol from 50mg a day to 100mg a day. Within 2 hours of taking the extra pill, I was feeling better again. I am continuing to feel better and better each day. That's my story.
     Even though my EF is low, I feel good. I can do almost everything I had been doing before my diagnosis - except play tennis and ride roller coasters! I get tired more easily. Thanks to you Jon, for this site. It has been great having the information easily available and I continue to find it very informative. God bless you and all your readers. One more thing: I have had lots of people praying for me and I'm sure that has been the reason for my continued progress. rcdrb@aol.com


Carolann S, November 6, 1999 - Hi all, I know I haven't posted in ages. I've been suffering from a severe case of depression that started when my children went back to school in August. I have had a change in medicines so I'll see how I react. Jon, I know we all appreciate the work you do with this site and keeping us all informed and it running so smoothly. I know that sometimes it may be a burden. Thank you very much. I look at it this way. I wish I had your talents. I feel so useless since I am no longer able to work. If I could find something like this to keep me busy, I hope my depression would ease up. Thank God you are able to do this most wonderful thing and keep us all informed. God bless. Carolann. Saphirebbw@aol.com


Jon's November 6 reply to Carolann S' November 6, 1999 - Howdy-doo, Weeell, it's a big Internet. I think there's room for one more - give it a try. <g> Drop me a line if you'd like some free software for it. Jon.


Lee R's November 7 reply to Carolann S' November 6, 1999 - Dear Carolann, I agree whole'heartedly' (pun intended) with Jon! It was his encouragement that finally got me going with a site. So many people with heart conditions also are depressed, so I think you could help a lot of folks. If I can help in any way, just drop me an email - Yahoo! GeoCities makes it fairly easy with one of their build-it editors, but the HTML isn't as bad as I thought it would be. Are you taking beta-blockers? I had a rough time finding one that agreed with me. I am only taking 2½mg of Zebeta and also take Prozac, which has helped my depression tremendously. Good luck to you and I hope you are feeling better. Bestest, Lee. LeeRoush@aol.com


Jon's November 7 reply to Debbie's November 5, 1999 - Hi Debbie, Gino sent me some further explanation. You can tell he's a conscientious doctor because he hates to see partial explanations. ;-) He said to apologize for his English, as it is his second language, but actually, his English is so good I never have any problems understanding it at all.

     "I explained the importance of the VO2max test to understanding the origin of shortness of breath. Now there is growing attention on this test because it gives important information about how the heart works. It gives an objective measure of the ability to perform work. So it does not depend on the personal interpretation of work as NYHA heart classes. We measure Vo2 in ml (mililiters) of gas for each kg (kilogram) of body weight taken (and burned) in a minute. This is done to make the measurement independent of body size. The normal value depends also on the age of the person, so another important way to express it is: percentage in respect to what an 'ideal' healthy person would measure in at. The 'normal' VO2max in a young person is roughly 25ml/kg/min and 20ml in older persons.
     There are many systems that classify the degree of impairment. Usually we speak of mild impairment when VO2 max is between 20-16ml/kg/min. An important cut-off value is 14 ml/kg/min because there are some studies that have shown a worse prognosis for patients with these values. To date however, there is some criticism about this interpretation. In fact, now there is growing evidence that the amount of oxygen (VO2) also depends on the ability of muscles to extract oxygen from the blood. In advanced CHF, after a prolonged rest, the blood vessels of muscles are relatively constricted and do not open adequately during exercise. This may influence the VO2 measurement. With regular aerobic training, we can reverse this problem. When exercise restores the blood vessels' ability to dilate during effort, the heart pumps against less resistance."

     This is Jon again. Gino has some of his work being presented at the AHA conference this week! You can search for it at Medscape using his last name - "Tarantini." Jon.


Bill C, November 7, 1999 - Hello everyone, I visited my new cardiologist yesterday. My records had not been transferred as I requested 2 months ago, however he got them faxed. He was amazed I hadn't been tried on Coreg so we started it today. I was pleased when he asked about the weary feeling in my chest and what percentage of the time I had it. He did not try to tell me I shouldn't be having any symptoms. <lol> Oh yes, he also does his report (dicatation) there with you, not as if it was a big secret. I hope everyone has a good day. Thanks Jon. If it wasn't for you and this site, I would still be thinking this was all in my mind. Bill C. bcraw50049@aol.com


Rebecca, November 7, 1999 - Hi, I do not have heart failure but do work in the field. I think your site is very much needed, Jon. Keep it up. I am interested in knowing if anyone knows of, or is involved in, a support group or educational group specific to heart failure outside of this group. I am currently developing such a program based on our patient population showing a lot of interest and to my knowledge, no other program is in existence. Any feedback would be greatly appreciated. Thank you in advance. Although I do not have heart failure, I have spent the last 5 years (as a nurse) caring and supporting those that do. Any help that I could give? Just ask! Rebecca. allan@ilap.com
 
Jon's Note: There are 2 such groups in my local area although I do not belong to either


Ruth P's November 7 reply to Ranelle's November 6, 1999 - Hi Ranelle, Two weeks before that, the doctor took me off Cozaar. I kept feeling worse and worse, and ended up in the ER and CCU for a week. I have fired the doctor but as I signed up for the study, which included an agreement to let them follow me to the end of the study, I still see him. However, I have a cardiologist who put me on Coreg. I am having some problems adjusting to Coreg but overall my heart seems to be functioning better and I am not so tired or breathless.
     Are you still being followed in the study? Jon, it's great that you are sleeping better. Our prayers are still continuing. Best to all. By the way Luc, did you ever receive my postcard of Montreal? For those who believe those doctors who give grim prognoses, I am at 11 years and 3 months. Life is not as easy as it once was, but is still very sweet. Ruth P. rpow@total.net


Bill M, November 8, 1999 - Hi, Well, I had my first blood test since bypass surgery and my cholesterol was 327 and is now 207. My triglycerides were 200 and are now 162. My doc put me on Coreg, a small dose of 3.25mg twice a day. I also took my first treadmill stress test. I didn't understand the numbers but I'm good enough to start cardiac rehab in a week or so. Social Security still has me on medical hold till December 7. I get the feeling I'm going to be Pearl-Harbored that day. So my morning cocktail is 20mg lipitor, 40mg Lasix, 10mg lisinopril, 325mg aspirin, 3.25mg Coreg twice a day, Colace and Herblax. I'm walking every day. I still have slight anxiety at night, so I take an advil to go to sleep. I have benadryl to help but I don't like them because I'm groggy enough in the morning; I don't need any help there. I still burn energy in weird ways. After my shower, I'm feeling good but 20 minutes later, I'm exhausted, then an hour later I'm a ball of get up and go, and then bang, I need a 2 hour nap. I'm seeing a new doctor soon. He's a general practitioner. It seems I have to have one. I hope he doesn't want to take control. I'm a believer in the one guy in charge theory, and at this point I want it to be my cardiologist. I hope everyone has a great day, and a wonderful Thanksgiving. Bill1x1@yahoo.com


Debbie, November 8, 1999 - Hi, Thanks Jon and Gino for the info regarding the VO2Max test. Funny, I never even heard of it before. Is it pretty much a routine test for patients with our condition? I'm planning to discuss it with my doctor when I see him in December. Gino's explanation does justify the fact that walking or some form of aerobic exercise is good for the heart. Thanks again. biloxibud@aol.com


Carolann S' November 8 reply to Lee R's November 7, 1999 - Hi, Thanks Lee. I was on 60mg of Prozac. I have been for about 2 years, but due to deepening of the depression was switched to Effexor this week. I will see how it works. I am also on 6.5mg Coreg, 2.5mg Zestril, 40mg Lasix, and 0.125mg Lanoxin. After 8 months, Zestril was finally added to my regimen. I suffer from low blood pressure and therefore the reason for not titrating up on the Coreg and so late in getting on Zestril. My blood pressure hovers around 100/60. If it goes lower, I have to immediately call the doc. Does anyone else deal with low blood pressure? I am told the low blood pressure is why I am tired all the time. I am requiring about 12 hours sleep a day. Any encouragement out there? Carolann. Saphirebbw@aol.com


Joe S, November 8, 1999 - Hi all, Lee and Carolann, I wish I had kept my medical records from years ago, but I didn't. I had to quit taking several beta-blockers and the like because of severe depression and paranoia. There were times I couldn't stop crying and I was a 45 year old man. If it wasn't for the 23rd Psalm, I think I would have gone crazy. I told the doctor at the time I would rather be sick then feel like that so I stopped everything for over 10 years. Then this stupid CHF hit and I tried several other meds. Now I am taking Hyzaar with virtually no side effects. Another med I had to really regulate was magnesium. I took two pills with 750mg and almost went out of my mind. Hang in there all of you, and type up the 23rd Psalm and Philippians 4:6-9 and put them where you can read them all the time. Joe. JES@StevensonLighting.com


Dan Lewis, November 8, 1999 - Hello everyone, I found this site years ago in a public library researching CHF. I was amazed to find out that I was not alone out there. The feelings, symptoms, and fears others were experiencing were the same as my own. I have been going through this for 7 years now. I am doing very well. I have gone from being hospitalized to working 60-70 hours a week. I give credit to God for keeping me going. I am not afraid anymore. Fear is a terrible thing. If I can help anyone get away from it, please contact me. Perhaps my past experiences can help you. Like many others, I have had all the thoughts and anxieties that come with this illness. I am currently on the heart transplant list, category 2, whatever that really means. I see the doctor twice a year. I am working and supporting my family. I am very thankful to be doing so well. It has not always been this way. Never give up. This is the one and only Web site I have ever posted on. Thank you Jon, for making it available.
     I have a question for anyone who can answer it. My HMO will no longer cover me for Cozaar. They said I will be changing to a drug called avapro. They say there is no difference. But as I have learned, this might not be so. Does anyone have information on this subject? Thanks, Dan. dansandyr1@aol.com


Jon's November 8 reply to Dan Lewis, November 8, 1999 - Hi Dan, I have no personal experience with these ACE 2 blockers but hopefully someone who does will write in. I can tell you that Avapro is made by Sanofi and its generic name is irbesartan, if that helps you find WWW info about it. Jon.


Kathryn, November 8, 1999 - Hello Everyone, My son (whom I have been talking about here for the past month or so) now has his own e-mail address. Could any of you please drop him a line? He is new to the Internet, so may not be johnny-on-the-spot with a reply; but I know it would help him to hear from others with CHF. Thanks so much, Kathryn (mom) in Portland. His name is Julien and his e-mail address is Jules26@gateway.net


Marty's November 8 reply to Carolann S' November 8, 1999 - Hi Carolann, I have really low blood pressure that I guess is typically in the 90/50 range with dips into the 80s and 70s (systolic). I usually feel fine unless it hits the 70s, then I feel dizzy. I am on 50mg Coreg and 40mg Prinivil, which has a lot to do with it. I am working on staggering my medicines to improve my BP. I am in cardiac rehab and I must stop exercise when I hit 80/60 or so and drink juice until it goes up. I have been like this since being diagnosed and I get tired, too, but keep plugging away. Hang in there! Marty. MartinBK@aol.com


Jay Q's November 8 reply to Carolann S' November 8, 1999 - Hi Carolann, The differences between conventional BP wisdom attributed to doctors is amazing. At least twice now on Jon's site, there have been accounts from people with systolic pressures around 100 who say their doctors are not starting or uptitrating Coreg because of their low BP. A little over a year ago I started in the 130s and now, thanks to uptitrations of lisinopril (Prinivil/Zestril) and Coreg, frequently see systolic values in the low 80s and diastolic values (and pulse rates) in the low 50s. I attend a clinic of 4 cardiologists and when I show any anxiety regarding my journey into the basement, the now standard reply is "those values for systolic, diastolic, and pulse pressure, or pulse rate don't worry us - what's important is how you feel." Basically, I feel fine. I am now at the maximum recommended dose for Prinivil (20mg twice daily), and have reached 12.5mg twice daily for the Coreg (I understand the maximum recommended is 25mg twice daily). Cheers, Jay Q, age 76. affinis@aol.com


Heather Saunder's November 9 reply to Carolyn S' November 8, 1999 - Hi Carolyn, I'm new at this site. Actually, I just seen it for the first time tonight and I'm amazed how there are a lot of people out there like me. I have really low blood pressure also. I've seen it range from 90-48 to 100-72. My cardiologist doesn't seem to worried about it, though. She says that with my weight of 105lbs, it seems ok. I'm 29 years old and have three little boys ages 10, 5, and 5 months. In July I was diagnosed with cardiomyopothy, CHF, a blood clot in the center of my heart and my heart is leaking fluid and wrapping around my lungs. My EF was 20%. I'm now at 45% with the help of medicines like 25mg Coreg, 20mg furosemide, 12.5mg Captopril, 10meq Klor-Con, 5mg warfarin and 0.125mg Lanoxin.
     What upsets me is when young doctors seem to overlook your symptoms and diagnose you with something else. I have been diagnosed with pneumonia, bronchitis, side pleurisy, and even put on anxiety medicine because of sweating. I wonder, had I been diagnosed earlier, would I have had a better chance of improvement? I'm on a heart transplant list but a professor of internal medicine for the heart decided to keep me on the medicine, if I get worse then an IV is put inside my chest putting medicine in me that way and then the last resort is a heart transplant. I'm so tired of doctors, nurses, and people whispering about how young I am. I know I am young and I'm so scared. Is there any hope? wesley1@bright.net


Jon's November 9 reply to Heather Saunders' November 9, 1999 - Hi Heather, Welcome to Jon's Place. The answer to your question is a plain and simple "Yes." There is hope. There is hope that your heart function will improve enough to keep you on your feet, at least. There is also growing hope that you will be around to mother your children for a long while. Mind you, there are no guarantees, but you're on an intelligent drug regimen and you've found a secret weapon - us. <g> I strongly suggest you drop the internist, regardless of his titles and reputation, and get yourself a cardiologist specializing in heart failure patients. All you guys reading this, please back me up here, about how important this is. Be sure you're on a low-sodium diet and I don't mean, sort of. Pace yourself! As mother of 3, you are going to have to plan, plan, plan, to keep up with the basic demands of your job as mother - which, by the way, is the most important job there is (outside of fathering, of course <g>)
     There are different aspects of life with CHF you need to address. The most obvious is physical. Read The Manual! Another aspect is emotional. Bring your family on board - don't shut them out, wanting to "not burden them." Let them know how you feel. Be honest with your friends so you discover quickly which ones are true friends and will stick by you. Accept offers of help - don't turn them down out of pride - pride is a luxury and we can't afford it. Request help with housekeeping and child care from your local church, mothers' day out groups, and other "regular" support groups, as well as trying to find CHF support groups in your area. If you have relatives living nearby, grow closer to them, not further apart. You will find support in a lot of places, but you have to look.
     Mentally, CHF is tough because when you're tired, it's very hard to motivate to do all the little things we are accustomed to doing. And CHF will make you tired. That's just how it is. Low BP doesn't help, either. Still, look at it as a matter of degree. What mother isn't tired?! <g> You have a lot to look forward to and a good attitude counts for more than you know. Spiritually, well, it's your soul. What are you going to do with it? A very serious question.
     Summing up: current meds may be able to keep your disease progression very slow. Heart enlargement should be slight, with a combination of beta-blocker and ACE inhibitor therapy. Aldactone will further the effect your ACE inhibitor started. Lanoxin will give you more energy. Exercise - done regularly and consistently - will prevent your muscle tone from decreasing too fast and keep your Vo2max up. A low sodium diet will prevent swelling episodes which would further weaken your heart. Fluid restriction may help as well, lowering the total amount of blood in your body, thus decreasing the load on your heart even more. Be sure to get flu shots and a pneumonia shot to prevent viral episodes that will weaken your immune system. Be a take charge patient, keeping your doctor on his toes. Question each meds change and get explanations face to face in plain English - accept no blow-offs.
     Down the road, TNF inhibitors, ETA blockers, IV globulin therapy, CPT1 blockers and drugs like Natrecor that get us through "acute" episodes of CHF, are all in testing as we speak. So hope abounds, in reality and in our hearts (so to speak). Jesus Christ keeps me going every day, despite fatigue and pain and frustration, and He will do the same for you if you let Him. That's your call. Sticking around here will keep you up to snuff on what to ask your doctor, so don't be a stranger.
     Finally, while I'm being my usual long-winded self, I just got a flu shot in one shoulder and a pneumonia shot in the other. With my beat-up shoulders (too many years in the old lumber mill), typing hurts! <g> So posts may be a bit slow in appearing but they'll make it sooner or later. Jon.


Roger H, November 9, 1999 - Hello all, It has been awhile since I have posted. I received this new Web page address and thought you all may find it interesting as well: http://www.cbs.healthwatch.com/. Also, I went to the doctor's several weeks ago and I had high BP but the doctor thought maybe it was due to a bout of bad pain from herniated discs. It was 150/100 so I went back a week later and it was 155/110 so he upped my ramipril up to 10mg a day from 5mg. When I went back in a week later, he read it at 125/95 and felt that was good. I have been monitoring it twice a day since then and it seems to average 150/100. He seemed to think that could be a sign of improvement. I don't see it that way. Has anyone else ever had BP go up that much? I am on 25mg Coreg twice a day and 0.25mg digoxin. I was just wondering if he could be right. Everything I read says otherwise. I fly to Vancouver to see my cardiologist in 2 weeks so I will find out more then. Take care, all. healman@hotmail.com


Pat D's November 9 reply to Dan Lewsi' November 8, 1999 - Hi Dan, My insurance company did the same thing - switched me from Cozaar to Avapro. I was concerned because it's been so extremely difficult to keep my blood pressure normalized, and I didn't want to mess with a successful combination of drugs (Cozaar, Demadex, Isosorbide Mononitrate and Norvasc) that finally did the job but I've had no trouble at all with Avapro nor experienced any side effects, and my blood pressure remained under control until I began Coreg. It dropped too low, so my cardiologist cut my Avapro in half along with the Coreg and eliminated Norvasc altogether. Then my BP started creeping back up again. I've added a second dose of Avapro just this week, and so far it hasn't lowered my BP but hopefully within a few days, I'll see an improvement. This wasn't a problem with Avapro, per se, just a problem with dose. Hopefully, you'll be able to make the transition without a problem, as I did. If you'd like to know more about it, you may e-mail me at patj98@yahoo.com


Jon, November 9, 1999 - Hi everyone, Just a quick thank you from me to everybody here, past and present. This poor old site has been hit well over a million times now, according to geocities, and I thank you for making such good use of the sweat of my brow. ;-) Jon.


Rick M's November 9 reply to Heather Saunders' November 9, 1999 - Hi Heather, I'd like to second Jon's advice on every step and answer your last question first: "I know I'm young, and I'm so scared. Is there any hope for me?" Well, I've been hanging around this site for a few years now, and the regimen Jon outlined is what I follow, and in just 28 days, I'm planning on celebrating my 75th birthday. Let somebody else do the heavy lifting. Remember, if you weren't here, someone else would have to do it, so let them start now. rearadml@iu.net


Pat L's November 9 reply to Jon's November 9, 1999 - Congrats Jon, I saw your post about the million hits. How does it feel to be a millionaire? patlat@yahoo.com
 
Jon's Note: I am surely the poorest millionaire in history. <g>


Susie O's November 10 reply to Heather Saunders' November 9, 1999 - Hi Heather, Believe everything that Jon posted. I went from a primary care doctor who diagnosed my CHF and immediately made me an appointment with a cardiologist. I was then diagnosed with DCM after a heart cath ruled out anything else wrong with my heart structure. My primary care doctor said it's too important to play around with trying to do this and that, when he could send me directly to a specialist. I have great respect for both doctors and they have gone out of their way to answer my questions. mrpaco975@aol.com


Susie O, November 10, 1999 - Hi, I found a site for walkers - http://www.justwalk.com. You register and put in how far you walk, and the times. It figures your calories and keeps track of all the data. You can have groups of people listed as a club also. It's really been a motivator for me to get on the old treadmill and also to get out and walk outside. I had just started keeping a calendar next to the treadmill so I could keep track of distance and time to try to motivate me when I found this. mrpaco975@aol.com


Joe S' November 10 reply to Heather Saunders' November 9, 1999 - Hi Heather, Rick M and Jon are 100% right about getting someone else to help. I am not 76 years old yet but sure hope to be. I have had heart problems for 55 of my 60 years and I am convinced the only way to last long with these problems is to do what Jon said. Of course I sure didn't when I was younger. I even have my wife lift anything, carry anything, even mow the lawn once. I love it. ;-) There is no shame in being sick and there is no shame in asking for help.
     The only other thing I might add is even be careful of some "expert" doctors. Mine misdiagnosed me for over a year and it took an internist to finally find my CHF. I swear sometimes they take the easy way out by saying "Hey, you're overweight, you smoked, you have to have emphysema or asthma." They never look at the heart. Hey, I'm rambling. One final thought is that Jesus is the only way for peace in our situations. Joe S. JES@StevensonLighting.com


Donald Gazzaniga, November 10, 1999 - Happy birthday former Marines. Today, November 10, is the Marine Corps' birthday. Semper Fi. Former Marine, Donald Gazzaniga. don@megaheart.com


Jana B, November 10, 1999 - Hi, Yesterday I was experiencing a pain in my upper back that was beginning to radiate under my left arm and to my chest. I called my doctor. They couldn't get me in so they told me to go to Urgent Care. Although there were only 4 patients ahead of me, I waited 1 1/2 hours before they triaged me, and the only reason they did it then was because I knew the head nurse and he made them. I went back to be triaged and my BP was 150/110 even though I am on high BP meds. My pulse rate was 100+. I was sweating profusely and my temp was only 96. They took me straight back to the "heart room." Without even seeing me, the doc there ordered a UA. I asked the nurse why he was ordering the UA and she said to check for a UTI. I then asked her "This is for Jana Byers, right?" and she said yes. So I asked to speak to the doctor. He was a big man and when he slammed through the door, it swung back and hit him and he proceeded to tell me that I shouldn't pretend to tell him how to do his job and that I can either do the UA and "if you don't like it, you can just leave." So I left.
     I went back to my regular doc and asked if there was any way I could be seen. They checked all available doctors and there were none with openings that day. They suggested I go to Member Services and talk to them. I have an HMO and have to go to whatever docs they tell me to see. Member Services took a complaint and told me it would be the equivalent of putting a suggestion in the suggestion box and that it would be forwarded to Quality Control. They also tried to find a doc who could see me, but couldn't, so I was set up to see a nurse practioner the next day (today).
     When I got home, I called Urgent Care to see when that particular doc gets off work. Since he was the only one working there that time of day, I thought I could catch another one later in the day, and they said he works till closing. So I waited till today. Well, today I was diagnosed with pneumonia by the nurse practitioner. I knew I didn't have a UTI - it didn't take a doctor to figure that one out! Does anyone have suggestions about to whom I can report this doctor? If it were anything else, I could have died! I am waiting for a heart transplant, with all these symptoms and he wants to check for a UTI. How can they take this so lightly?
     By the way, the nurse I know from Urgent Care said the doctor called me a bad name after I left! That was uncalled for. I even told him "Thank you but I will try to see my regular doctor" when he told me to leave. Arrggghhh. I wish I wouldn't have said thank you to him. Sorry I rambled. Does anyone have any suggestions? Thanks, Jana B, EF 21%, age 36. JByers4u@aol.com


Jon's November 10 reply to Jana B's November 10, 1999 - Hi Jana, I'm sorry this happened to you. The first thing is to vent a bit and realize that you cannot allow this chump to stress you out. You don't have to get mad because he is a lousy doctor. You should file complaints where it may do some good to protect future patients from this guy, including of course, yourself.
     First things first, though. For next time, steel yourself to do some things - you may have to deal with this guy again. Walk by him to the door or curtain of the room you are in and loudly ask the nearest hospital employee to come here immediately. If they hesitate, repeat loudly but without hysteria that you need immediate help. Then with that employee in hearing range, ask the doctor to repeat himself because you aren't sure you understood what he was telling you. Then you have to play it by ear. Whatever he says, ask him a question about it immediately so everything sticks in everybody's mind. For example, if he says, "If you don't like it, then just leave." Ask him, "Are you refusing to consult me before treatment begins? Are you refusing to treat me?" Tell the doctor and employee that you are on the heart transplant list and have had a stroke once already and that you believe you require immediate consult and treatment for your well-being.
     Now, this seems impossible to do when you are very sick and faced with a very intimidating doctor and situation, I know. I really do know. My own doctor almost killed me one time - only a competent doctor stepping in saved me. I won't allow myself to be in that situation again. The only thing I can tell you is to repeat to yourself over and over "This is my LIFE!" And it is. Are you going to let this guy kill you? Jana, I am not getting on your case. You did the number one important thing - you stayed calm verbally - and I'm proud of you for that! It's tough. It's the next time I am trying prepare you for. Don't forget to sit in the car outside afterward and write it all down - every detail!
     Now, to make a complaint carry weight, you need some "inside" information and here is some for you. Go to the hospital CEO's office. He will see you if he is there, trust me. If he is really not available, a vice-president will appear very shortly. Tell him you believe you have an EMTALA violation, and that you are seriously considering calling the state department of health in on it all. This carries an automatic $50,000 fine for the hospital along with their dread fear of the state department of health because once the state starts looking for violations, they keep on looking waaaay past your incident. Now, you have his complete attention, trust me. Don't ask where I get this info - I won't tell ;-)
     The EMTALA violation comes into play because the doctor refused to properly consult with you before treatment which means you were not given an "adequate" screening prior to possible treatment. At least, that's how you go into it, but don't even explain that to the CEO unless pressed to do so. Just mention the state department of health in conjunction with an EMTALA violation and then shoot for what you want, right away. You have to know what you want - probably an apology/explanation and an assurance that such an incident will never be repeated. Tell the hospital CEO that you know some of the hospital staff and that this doctor was heard to make derogatory comments about you after you left the ER. Tell him flat out that your friends fear reprisals and so you will not - at this time - name them, but that this information is available if you need it later. You can also complain to the state medical insurance commissioner about the lax handling of your complaint and need for treatment by your HMO. You might as well wake everybody up on this one. <g>
     Well, I've rambled long enough, something I'm so good at. So I'll sign off, and hope this helped give you some direction to go. Jon.


Lydia Moore, November 10, 1999 - Hi Jon, I have a few quick questions. How or what have you been doing to improve your sleep? I seem to be on the downswing with this one. I also wanted to ask you one more question. Does a person feel worse every time they bump up their Coreg? I am extremely tired and don't have quite the energy I had before it was bumped up. Thank you again for your great site. Don't know what I would do without it. I also love Jesus Christ. I couldn't make it without Him. Thanks, Lydia Moore. gemini49z@yahoo.com


Jon's November 10 reply to Lydia Moore's November 10, 1999 - H Lydia, I never had a problem with Coreg so maybe someone else can write in and help you with that one.
     Prayer. That's what got me my sleep. Within a couple of days of putting myself on our own prayer list here and my wife putting me on our new local church/pastor's prayer list, I was sleeping every night and awake every day. Still am. No joke, no other changes. :-) Jon.


Barbara P J's November 11 reply to Lydia Moore's November 10, 1999 - Hi Lydia, Each and every time my Coreg was adjusted, I went through a period of several days to over a week of feeling exhausted. I went back to sleeping most of the day and night. Then things would pop back to better than before. I've had a wonderful 1½ weeks and we are not changing anything until after the holidays. Then I head for the 25mg twice a day dose! When I first started Coreg was at least 5 weeks before things started changing for the better. Hang in there because I can truly say that since I've been on Coreg, I have felt like I'm back in the world of the living. Barbara P J. bpjohns@accessatc.net


Carol O's November 11 reply to Carolann S' November 8, 1999 - Hi, I also have low blood pressure that stays in the range of 90/60 and sometimes down to 80/50. I feel dizzy occasionally, but I think I have just learned to live with this low pressure and it really doesn't bother me. I am also taking 18.75mg of Coreg twice a day, which is probably helping to keep my pressure low. My doctors titrated me up to this level of Coreg very slowly, taking one to two months to increase to a higher dose. My cardiologist originally wanted me to be on 50mg of Coreg daily, but now he doesn't want to increase my Coreg anymore because he doesn't want my blood pressure to get any lower. Good luck to you as you deal with your low BP. pinevalley@mediaone.net


Leeann D, November 11, 1999 - Hi everyone, I'm going to give my own testimonial for my favorite Website. In April, 1998, at age 37, after embarking on a big adventure with my family (3 kids ages 1, 3 and 5 and my wonderful husband) living in Holland for 4 months and then on to Seoul, Korea, I was dianosed with DCM in an international hospital. My EF was around 15 and my LV measured 8.25cm. After being in the hospital for 10 days and flown back to the USA, I was evaluated at the Heart Institute here in Phoenix and my EF was 8, my LV 7.5cm. I was given a poor prognosis and sent to be evaluated for transplant.
     Well, I improved slightly that summer. My EF went up to 20 and my heart size went down to 6.5cm. I was on all the great meds - digoxin, Coreg, zestril, Lasix and Coumadin. I steadily got worse, my heart growning slightly by each appointment and my EF getting slightly worse. Last January, my EF was 12 and my heart size up to 7.25cm again. Then I suddenly went from an EF of 12 to 30 and my heart decreased to 5.7 cm. A miracle to be sure!
     Yesterday I had my first appointment in 6 months and my EF is now 45 and my heart size 5.2cm! I couldn't stop smiling. All the while, I have not felt that bad. I do have more energy now, but never was one to stay in bed all day. I know that God has worked a miracle in my life, and not just physically. My attitude has changed. Material things are not so important. Staying busy isn't either. I laugh and joke about bringing my friends into my messy house where before I was so apologetic and embarassed! I now could care less about getting ahead of someone in traffic. My children are such angels and I truly love the age they're at right now - no wishing they were older or younger, easier or potty trained!
     I just want to tell anyone just diagnosed that while my video is used in conferences all over the state to show med students and patients the worst EF my doc has ever seen (he's a CHF/transplant specialist who gives conferences and seminars), I am alive and well! I'm a proactive patient. I discuss the latest meds and doses, I take CoQ10 and other supplements, I follow a low sodium diet and exercise. The people at this site gave me understanding, courage and knowledge when I needed hope. When I was first diagnosed, I loved reading the posts about people getting better! Later, I admit, it sounded like everyone was getting better but me. I hope this encourages someone who was first diagnosed and to everyone else, hang in there - you just never know! LeeAnn, age 39, EF from 8 to 45! ddavis1057@aol.com


Dan's November 11 reply to Lydia Moore's November 10, 1999 - Hi Lydia, I am currently on 25mg dosage of Coreg twice a day. I started about 2 years ago. I was gradually brought up to this level. I had some terrible times as I was being brought up to this level. Every day was differant. My worst day as I recall, I had no energy and did not even want to move out of my chair. Other days were better. The good news is that I feel much better now and have no ill side effects from Coreg. We are all different but I believe the long-term benefit is worth the short-term discomfort. Try to hang in there during this transition time and my family and I will pray for you. E-mail me if you want more details on my experience with the Coreg process. Dan. Dansandyr1@aol.com


Ben B's November 11 reply to Jana B's November 10, 1999 - Hi Jana, What is a UA and what is a UTI? Sorry about your bad treatment. bdbrinkman@juno.com


Lydia Moore's November 12 reply to Barbara P's November 10, 1999 - Hi Barbara, Thank you for the response to my post about Coreg. I wish I could say I was sleeping but I am also having a problem in that department. Along with that my muscles seem to ache a lot; just an all-over flu feeling. If you or anyone else has any other imput on Coreg, I would really appreciate it. I have been told to hang in there with it because it gets better and it's worth it, so I am doing just that. I appreciate your input because you gave me hope that all will be better. Thank you, Lydia Moore. gemini49z@yahoo.com


Eli Alroy, November 13, 1999 - Hi, I have DCM, CHF, an ICD and an EF of 28%. I have had 10 shocks from my ICD but am feeling ok. I read about gene therapy on the doctor's guide (http://www.pslgroup.com/dg/140566.htm). Does anyone with DCM have any news about it? My doctor recommended mt to go try it. Thanks in advance, and best regards to all. Eli. aviram@netvision.net.il


Jean, November 13, 1999 - Hi, I was diagnosed with CHF in January of 1999, and have been on Coreg, Zestril,and Lanoxin with increases in all meds done on a gradual basis. My first echocardiogram showed an EF of 10-15%. Recently I had another echo and my EF is normal at 55%. Do you think my cardiologist will continue my medications or stop any or all of them? I have an appointment next week. drrusch@ties.k12.mn.us


Sally, November 13, 1999 - Hi, I am trying to find out if there are any studies of families who have more than one member with cardiomyopathy amoung siblings. We just found out this week that 3 of us have it. I was diagnosed September 27 of this year, and our brother died of this at age 31, almost 20 years ago. I am a 49 year old female. The newly dignosed one is my brother, age 47. Until I was diagnosed, we had no thought that it was in the family. Both parents lived long lives. Our mother died of Alzheimers' at age 85 a year ago. Our father is still living at age 87. Neither one of them had any apparent heart disorders other than high BP in Dad. I haven't talked to my doctors about this yet as I just found out about my brother last night.
     By the way, this site is great for information, and I just sent my brother the address. I found out about my cardiomyopathy when I went into heart failure and ended up in the hospital for a week. My brother has had no symptoms. He only went to be checked when I showed up with it. He is to have a thallium stress test next week and has been started on an ACE inhibitor right away. Any clues as to whether or not there are any studies of families such as ours? Looking forward to responses, so thanks in advance. mafishbone@hotmail.com


Jon's November 13 reply to Sally's November 13, 1999 - Hi, See Jon's Heart Links for a familial cardiomyopathy Url. Jon.


Jay Q's November 14 reply to Lydia Moore's November 12, 1999 - Hi, I am on Prinivil (Zestril), Coreg, and aspirin. I recently went through about a one-week bout of extreme muscle soreness in my lower back, hip, and upper leg muscles near their hip attachments. Since I had recently up-titrated my Prinivil to 20mg twice daily, I backed off to 15mg twice daily for 4 days. There was immediate improvement, however my doctor persuaded me to resume the original dose to see if the symptoms returned. They didn't, so I conclude the discomfort may have been caused by a low-grade case of flu combined with the up-titration. Cheers, Jay Q, age 76. affinis@aol.com


Joy R, November 14, 1999 - Hi, I just wanted to know if anyone saw the national news last week about a new heart drug that is suppose to help with strokes, heart attacks and improvement of CHF. It started with an A and was only about 6 letters, I didn't write it down and now can't remember what it was. The news said it was usually taken with all your other heart meds, and was very promising. I want to get more info on it, so maybe someone can remember. Thanks, Joy. wapalaremi@home.com
 
Jon's Note: Altace (Ramipril). It's an ACE inhibitor. The study just widens the population who may benefit


Tom S, November 14, 1999 - Hi, There is an Internet phone service that may be of interest. http://www.dialpad.com/ is a computer to telephone service. Most phone services are computer to computer but this one is to computer to non-computer telephone. Like all systems, there are a few drawbacks; the primary one being you have to be equipped to talk through your computer to your modem (full-duplex sound card and microphone). There is a lag and a sometimes annoying echo on the other end but what do you want for nothing? I believe the site is advertiser supported. It requires that you register and fill out a short questionaire. I think all they care about is the ads they pop up on the dialer screen while you are talking. You can talk as long as you want, as far as I can tell. Have fun. I know I am. biggerbhoy@hotmail.com


Victor D, November 14, 1999 - Hi folks, Jon, I just recently found your site. I want to say thank you! After just 2 visits, I have learned a lot. I had a heart attack in 1991 and have been up and down since then. Last December I had and ICD and a pacemaker implanted. Just recently, they started me on Coreg. Thanks to your site, I am realizing some of what I am going through now. I will be a regular visitor from now on. ComoUSMC61@aol.com


Jana B's November 14 reply to Sally's November 13, 1999 - Hi Sally, My mom died of cardiomyopathy. I was just diagnosed in February of this year. My 19 year old niece has it too. My grandmother also had it, but as far as siblings go, mine are all afraid to go to the doctor. I am the baby of 5 and I suspect my sister, the mother of the niece, may have it too. She has some of the symptoms. Jana, age 36. Jbyers4u@aol.com


Phyllis A, November 15, 1999 - Hi to Jon and all of my friends, I miss you all and hope to be back regularly very soon. My Dad is doing better. He is now off the respirator and eating purée foods. He had a minor setback 11-14 but I pray it is just that, for he is doing so well. Thanks for all your prayers. Please continue to pray for him and for my family. The stress did take its toll on me and I developed strep throat but it is better now. phylcasurv@msn.com


Robin Lynn, November 15, 1999 - Hello to all, It has been so long since I've been in touch that you may not even remember me. First of all I want to tell Heather, as so many of you already have, to trust Jon and his advice, and most of all to trust in Jesus! I also have young children, ages 3 and 7, both girls. It is so hard to look at them and think of what the future will hold for them. Have faith. God will take care of all of you. :-)
     I am approaching my one year anniversary with the knowledge of DCM. In March, my EF was 46% and I am scheduled to have another echo in 2 weeks. I am praying for good results. To some of you that may not seem so bad but it hit me like a ton of bricks. I was put on 50mg Atenolol a day and 20mg Monopril. Because of my blood pressure and pulse rate dropping so low, I have been dropped down to 5mg of Monopril a day and am now experiencing symptoms again. My cardiologist told me to stop the Monopril all together but I haven't listened to him yet. <g> My symptoms come and go - dizziness, near fainting and so sluggish I can't move. He says that if it is lowering my BP (80/50) and pulse rate (30-48bpm) so much that it isn't doing my heart much good anyway. I know people with BP low like mine that do not feel anything at all. What do you think about that, Jon? (taking me off ACE inhibitor) He attributes it to the fact that I am now working and getting more exercise than I used to.
     I have started having those awful attacks again. It seems that my heart is trying to stop! I can't explain what it feels like. My body temperature drops, I have shivers, my heart is slow and sluggish, and I have the worst arrhythmia - stop and go with flips and bangs. I am cold and clammy. I just don't know.
     Now for my praise. The Lord has blessed me with a wonderful job. I am teaching pre-school at the church where I am a member. I love my job! To get out of the house and teach these little ones about all the wonderful things our heavenly Father has blessed us with has been a lifesaver for me! I am not as depressed and I hardly cry anymore, thanks be to God. My body feels as though it has gotten stronger and we will soon see about my heart. I have had some difficulties in the energy department and my body hurting but when I look into the faces of those little ones who look up to me, I can't let them down.
     Thanks Jon, for all you do. Heartful99@hotmail.com


Phyllis W, November 15, 1999 - Hi, I have been hearing a lot about magnets helping arthritis and am wondering if anybody has tried it for heart problems. If so, did it seem to help and how? Has anybody asked their cardiolgist about it? Thanks. pwatjen@vincennes.net


Bev T's November 15 reply to Bill C's November 7, 1999 - Hi Bill, I saw your post about the doctor dictating with you in the office. I went to a doctor while visiting in Winchester, Virginia, who did the same thing. I've never heard of such brave folks who let their patients in on the "secret." I wish there were more out there like them. Bev T, age 55, CHF, DCM. Mtnmama008@aol.com


Bev T's November 15 reply to Bill M's November 8, 1999 - Hi Bill, Just tell your new GP just how sick you are. He will send you scurrying to the cardiologist! <g> Bev T.


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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