The paperwork never ends The Archives
October 16-31, 1999 Archive Index CHFpatients.com

Jo's 10-16 reply to Gus R's 10-13     thanks, eyesight, hearing & more
 
Ruthie A 10-16     update, CHF specialists, rough going
 
Gatha 10-16     Imdur vs nitro patches, rebound warning
 
Don G 10-16     low sodium Thanksgiving meal ideas
 
Helen Otis' 10-16 reply to Jerry Fryar's 10-14     using nitro
 
Lydia Moore's 10-16 reply to Jon's 10-14     this forum, looking forward & more
 
H Weems 10-16     have a new e-mail address
 
Dee K 10-16     herbs & Rx drugs
 
Sarah F's 10-16 reply to Jon's 10-14     Rx drugs, depression, treatment options & more
 
John Len's 10-16 reply to Lori P's 10-15     nitro headaches
 
Christy M 10-16     interesting TV shows & Url
 
Bill D's 10-16 reply to Lori P's 10-15     nitro patches & meds, & headaches
 
Phyllis A's 10-16 reply to LeeAnn D's 10-14     memory loss & ginko biloba
 
John Len 10-17     artificial valve lifetime question
 
Milt's 10-17 reply to LeeAnn D's 10-14     memory problems, forgetfulness
 
Roger G's 10-17 reply to Boots' 10-8     breathing & EF, doctors
 
Jo 10-18     cath tomorrow & some questions
 
Robert A's 10-18 reply to Phyllis A's 10-16     herbal use & surgery caution
 
John Len's 10-18 reply to Milt's 10-17     about those keys
 
John Len 10-18     update on myTMLR laser surgery for my angina
 
Milt's 10-19 reply to John Len's 10-18     those elusive keys
 
Jeanne 10-19     grape juice question
 
Elton 10-20     CHF & gout questions
 
Karen K 10-20     update & prayer request
 
Pam 10-20     I think I may have CHF
 
Ruth P 10-20     update, drug trial, fired my doc & more
 
Jim 10-20     seek CHF doc in St. Louis area
 
Claudia 10-20     questions about medspeak in echo report
 
Jon's 10-20 reply to Elton's 10-20     diuretics & gout
 
Jon's 10-20 reply to Claudia's 10-20     medspeak
 
Joe S 10-20     update on effects of the move & more
 
Connie R 10-20     question for anyone on Atkins' diet
 
Jeanette 10-21     am on Zoloft & have some questions
 
Luc D 10-21     just saying hi, angina
 
Diane P 10-21     frustrations of CHF, any suggestions?
 
Pat D's 10-22 reply to Diane P's 10-21     ginseng helps me
 
Pam E 10-23     upcoming MUGA, eyesight problems & more
 
Jo 10-23     cath results, many questions
 
Jon's 10-23 reply to Jo's 10-23     a shot in the dark
 
Luc D's 10-23 reply to Jon's 10-22     those bio pages
 
Jon's 10-23 reply to Luc D's 10-23     no sweat
 
Brenda George's 10-24 reply to John Len's 10-17     valve replacements
 
Jon 10-25     it was a nice run,.....
 
Jon 10-26     no rest for the weary <g>
 
Leland Y 10-26     bad reaction to spironolactone
 
Doug K 10-26     hope this works out & more
 
Jana B 10-26     substituting, Disability & type of jobs
 
Al H's 10-26 reply to Jon's 10-26     what about the rest of us?
 
Jon's 10-26 reply to Al H's 10-26     naw, I don't think so <g>
 
Kenneth Dvorak 10-27     update, importance of information
 
Staci H 10-27     of snakes & heart forums
 
Erica V 10-27     what is a coronary angiogram?
 
Jon's 10-27 reply to Erica V's 10-27     coronary angiogram info
 
Lydia Moore 10-27     trying to reach Jo
 
Jack 10-27     good things can happen
 
Phyllis A 10-27     thanks, update & more
 
Luc D 10-28     thanks & more
 
Joyce M 10-28     diet & fluid retention questions
 
Pat Ryan 10-29     leg numbness questions & more
 
Lisa H 10-29     now it's asthma too - anyone else?
 
Jon's 10-29 reply to Lisa H's 10-29     coping
 
Jamie S 10-29     improvement is possible & more
 
Jamie S 10-29     November Life magazine article
 
Wendy 10-29     Lyme disease & cardiomyopathy
 
Frank M Smith 10-30     CoQ10 questions, seeking better price
 
Lydia Moore 10-30     chest tightness when lying down & more
 
Jon's 10-30 reply to Lydia Moore's 10-30     chest tightness when lying down & more
 
Cecil's 10-30 reply to Elton's 10-20     gout & its treatment
 
Al H's 10-30 reply to Cecil's 10-30     gout, Lasix, Urls & more
 
Gene S' 10-31 reply to Jon's 10-30     leg pain possibilities
 
Jon's 10-31 reply to Gene S' 10-31     leg pain options
 
Kim S 10-31     SSD denial & more
 
Jon's 10-31 reply to Kim S' 10-31     SSD, lawyers & more
 
Ginger 10-31     how do I get someone on chemo to eat?!


Jo's October 16 reply to Gus R's October 13, 1999 - Hi Gus, I just wanted to say thanks for your reply and humor! I didn`t take a sedative the last time I had a cath done. I wanted to see the proceedure but I think this time I will take the sedative. It is very interesting though. I have also noticed a big difference in my eyesight. There are days I can`t read from a book because it`s too blurry, and some days the whites of my eyes become so bloodshot I look like a monster. I have spells where one ear will go out completely for a couple minutes, but the hearing soon returns! Anyway, thanks Gus, and I hope everyone is having a good day today! jt2llcubby@webtv.net


Ruthie A, October 16, 1999 - Hi to all, Welcome to the newbies. Thanks to all of you who have written and prayed for me the last couple of months. I am still pretty invalided (is there such a word?). I am able to walk only about 10 steps without my walker. I rarely get out, usually to a doctor, and only then in my wheelchair. We have finally found a surgeon who will do my surgery the "antique" way of 25 years ago, but time is too short before our insurance runs out. So we have to wait until hubby gets a job and our new coverage kicks in.
     In the meantime, the pain has lessened and we are trying to get me off Percocet. That is easier said than done as I am addicted to them. I tried to drop them too quickly and went into the most horrid withdrawal. When my heart rate started going up and up, we called the doc who put me back on a timed regimen of the drugs. We have tried 2 more times to lower the dose, but I get really sick. I may have to go to a chemical dependency hospital to come off Percocet to protect my heart. We find out today if the insurance will cover it. If so, I may commit myself (it's also a psychiatric hospital) as early as Monday. Please pray that we are successful in stopping the drug.
     When it rains it pours! I now also have an inner-ear infection that causes vertigo - you know, the spinning kind of dizziness - and we have added antivert and another antibiotic to the mix. On top of that, I had another episode of flash pulmonary edema. I was so short of breath that I was gasping for air. I could not breathe at all unless I was sitting up. That went on for nearly 24 hours which was not so hot for my back problems. Fortunately, we have been able to increase my diuretic to the maximum dose and get most of the fluids off. My O2 saturation is finally up to 95%, so we can relax now. My CHF doc does not want me to travel to Nashville to see him because of my back injury so he has been calling to see how I am doing. If you don't have a CHF specialist overseeing your CHF care, GET ONE! It definitely makes a major difference in your care and over all well-being.
     Thanks again for your emails, thoughts and prayers. I will keep you posted as I can. Ruthie. rlaba@preferred.com


Gatha, October 16, 1999 - Hi everyone, Imdur is a wonderful drug - no headaches and no chest pains for me. Just don't forget to take it and have a rebound like I did one time. I set my medication up for a week's time in a medicine case so I don't forget something since I take so many drugs now. I tried the patch in the beginning and had awful headaches also. Take care and God bless. Jell855859@aol.com


Don G, October 16, 1999 - Hi all, I have put an Url online for those interested in a complete Thanksgiving dinner with low sodium - about 137mg for the entire meal. This menu and all the recipes to fulfill it are at www.megaheart.com. Thank you. Donald Gazzaniga. don@megaheart.com


Helen Otis' October 16 reply to Jerry Fryar's October 14, 1999 - Hi all, In August, I was given nitro pills to carry. The time I used the nitro was after really bad chest pains that wouldn't go away no matter what I did. My grandfather used to take nitro, plus he wore the patches, so I knew what to look forward to. For me, the headaches have not been only thing. I also got sick to my stomach, tingling all over my body, and waves of intense heat. Although I still keep the nitro with me at all times, I do my best not to use it. I have an appointment with my GP next week to discuss my reaction. Helen Otis, age 25, EF 25-30%. woohoo@mailpuppy.com


Lydia Moore's October 16 reply to Jon's October 14, 1999 - Hi Jon, Thank you for your reply about the med. We have to remember to stay in the moment and not the past. Anger certainly can't help our situation. I am going to bring this up to my doctor because I think the people on this forum have a lot of information to offer that can benefit the medical professions. I have learned more from your site in 6 months than from any doctor, for which I am so grateful. I want you to know how much you are appreciated for putting this site together. I thank God for it every day because I feel I have a new family of friends to turn to who really understand what I am going through. You are truly a blessing and doing God's work. God bless you and everybody here. Lydia. gemini49z@yahoo.com


H Weems, October 16, 1999 - Hi everyone, I now have a new e-mail address. You can reach me at hwweems@airmail.net. My best to all. My old friends phoenix sold themselves to airmail.


Dee K, October 16, 1999 - Hi, Responding to Linda's 10/15 post; Linda, I was on a very expensive antidepressant and asked my doc if I could change to St. John's Wort. He said "No" and that it would not interact well with the drugs I take for CHF. I'm on 12.5mg Hyzaar and 0.25mg Digoxin. It could be the same happened to you. He said even herbs sometimes are harmful when taking meds, so be careful. Jesus is love. Dee Knight. DK1992@aol.com


Sarah F's October 16 reply to Jon's October 14, 1999 - Hello everyone, I rarely post, but the comments about the use of drugs caught my attention. I too believe that when the doc gets out his prescription pad, we should ask any questions that we can think of. Most of us take so many pills daily that we can hardly think about adding another. There are no magic bullets.
     However, as a mental health professional, I have to say that amtidepressants are a tool that is available to assist us. Yes they have side effects, but for most people depression cannot be "cured" by willpower alone. It can be a chemically based problem that needs medication the same way heart failure is a physical problem treated with drugs. An evaluation by a licensed mental health professional and physician is critical and the use of the drugs should be closely monitored. Talk therapy is often an important part of the treatment process. It helps to develop coping skills. I would encourage anyone who may be clinically depressed to seek professional help and to remember to exercise judgement regarding treatment the same way it would be used under any other circumstance.
     Thanks for listening. I hope I haven't been too windy. Take care everyone. Sarah, EF 20. sfuhrmeyer@neo.rr.com


John Len's October 16 reply to Lori P's October 15, 1999 - Hi Lori, The nitro headaches will go away with use and time. I had forgotten what they were like until I went back on nitro yesterday. John. a_lenny6@hotmail.com


Christy M, October 16, 1999 - Hi, As a new subscriber to digital cable, I've stumbled across the Discovery Health TV Channel. I have no assocation with this channel or network, and am not promoting the channel. I only bring it up because I found it interesting and thought some of you may find it interesting also. I watched a show called "Heart Surgeon" this week that discussed and showed heart transplants, LVADs, case studies and bypasses. This upcoming Monday is a show called "Operation - Heart Reduction" that sounds a bit like the Batista procedure to me. If you have access to this channel, it may be worth checking out. I'm certain that they rotate these shows, so if you miss it once you can catch it later. Check out their website at http://www.discoveryhealth.com/ for more information. breezip@hotmail.com


Bill D's October 16 reply to Lori P's October 15, 1999 - Hi Lori, I just wrote to Jerry Fryar telling him that I thought his 2mg patch was too big a dose. My patches are only 0.4 mg. I use them 16 hours a day and then I switch to 20mg Monoket and a half tablet 7 hours later. I suggested to Jerry that maybe he could cut his patches in half and see if he got angina pain. I don't have any problems with headaches. When I went the ER one time, they smeared on a nitro paste. In seconds I had to scrape it off because of the terrible headache. Gee! Jerry just wrote back that he cut his patch in thirds and he hasn't had angina for all of 3 hours! Jerry, my doctor said you shouldn't wear the patches all day long. That's why I take the generic Monoket. (Isosorbide Mono?) I'd be careful, Jerry. I'm not a doctor and 3 hours isn't much of a test! Bill D. billdog@gate.net


Phyllis A's October 16 reply to LeeAnn D's October 14, 1999 - Hi LeeAnn, I also suffer from memory loss - short term memory loss. I started gingko biloba and have noticed a difference. I'm also 48 years old and going through menopause, and between the CHF and menopause I couldn't remember anything; not enough oxygen getting to my brain. I asked my doctor and she said it can't hurt to try.
     Also, everyone please continue to pray for my dad. He is now on a respirator. He is currently assisting the machine and they will wean him off a little at a time. Thanks. phylcasurv@msn.com


John Len, October 17, 1999 - Hi, How long does the average heart valve replacement (pig vlave) last? John. a_lenny6@hotmail.com


Milt's October 17 reply to LeeAnn D's October 14, 1999 - Hi Lee Ann, I have also had memory losses, usually with doors. More then once, I have left the keys in the door overnight. I find them as I go out the door to work in the morning. On 3 occasions, I have left the front door wide open. I do feel lucky in that I have always remembered to close the bathroom door, I think. My wife has been no help in this either. She locks the keys in the car every now and then. The car has keyless entry and neither of us can remember the code number. So I have to take the spare set to go and open the door for her. mlmcpherson@earthlink.net


Roger G's October 17 reply to Boots' October 8, 1999 - Hi Boots, I have a similar EF and only have an occasional breathing problem. I don't know if you should dump the doc, but other considerations are never worth overlooking. rg2@prodigy.net


Jo, October 18, 1999 - Hi all, Well, tomorrow is a big day for me! I am scheduled for a cath. I had one 7 years ago and at that time, they found left ventricular dysfunction with high end diastolic pressures - whatever that means. Since I have recently developed many more symptoms, I am wondering what this one will show. I really appreciate the e-mails I have gotten since I first posted on this site. I have become a daily reader and feel I have found a second family here.
     During a stress test I recently had, my EKG showed left and possibly right ventricular hypertrophy, a right QRS axis, LBBB, and a long QRS of 12, along with other things I just can't remember now. I'm not sure what these mean. If anyone here can shed some light on it, I would appreciate the help. Thanks. God bless every one of you! jt2llcubby@webtv.net


Robert A's October 18 reply to Phyllis A's October 16, 1999 - Hi Phyllis, I just read something about herbal remedies if taken before surgery. At a conference in Dallas for the American Society of Anesthesiologists, a survey showed some herbs may prove to be dangerous prior to surgery. The most common herbs listed were gingko biloba, garlic, ginger and ginseng - all of which may prevent blood clots from forming and lead to excess blood loss in surgery. Two other herbs - St. John's wort, and kava-kava - may prolong the sedative effect of anesthesia. They recommend patients stop taking herbal products at least 2 weeks before elective surgery and keep their doctors informed about any herbal supplements they may be taking because they can interact with food, each other and other prescription drugs. Robert A. Ralley0822@msn.com


John Len's October 18 reply to Milt's October 17, 1999 - Hi Milt, Do what I do - keep a spare set of car and house keys in your wallet. Of course, if you forget your wallet,... a_lenny6@hotmail.com


John Len, October 18, 1999 - Hi everyone,Well, the laser surgery where they blew 38 holes in my heart worked for about 2 years, but last week I wound up back in the hospital and back on nitro. Anyhow, it gave me 2 years without pain so for that I am thankful. John. a_lenny6@hotmail.com


Milt's October 19 reply to John Len's October 18, 1999 - Hi John, We have a house key hidden out side near the back door, somewhere - we think. We keep looking for it. With any luck, we will find it and write down the location before we need it. mlmcpherson@earthlink.net


Jeanne, October 19, 1999 - Hi, Has anyone been told not to drink grape juice because it could react with your medicines? I have heard this about grapefruit juice but never before about white or red grape juice. This was told to me by a concerned family member and I thought I'd ask people on this forum. God bless you all! jeanneml@hotmail.com


Elton, October 20, 1999 - Hi, I've had symptoms twice now that people are saying sound like gout. I've never had problems like this before. I do have CHF, with a EF of 15 and it's almost time for a new echocardiogram, after 6 months without one. I'm hoping for a sign of improvement, of course. About the "gout" symptoms, I've been told that goes hand in hand with kidney stone history, which I have; but I also have been told by someone else of a person who had a heart transplant and now has gout as a side effect. What's the tie-in here? What's the relationship between CHF and gout and CHF medications such as Digoxin, Lasix, Ismo, and Hytrin? Also, I read on the Internet last night that one treatment for gout can be diuretics. I already take 40mg twice a day of Lasix. RebeccaG99@aol.com


Karen K, October 20, 1999 - Hi all, This is just a quick post to let you know I'll be gone for awhile. My sister has cancer and was told yesterday there is nothing more they can do for her. She also has some form of dementia which has been slowly deveoping over the past couple of years. This is all so sad and could have been prevented if she hadn't put off going for her mammograms. Our mother had a mastectomy when she was in her 50s so we had quite a risk factor but my sister is quite the procrastinator.
     I'm flying to California on the 27th and will fly from there with my mother on the 29th to Seattle. We'll stay in Seattle until November 8th and then fly back to California.
     Right now I'm just totally drained emotionally. My sister called last night to tell me what the doctors had said. She isn't really capable of carrying on any conversation as she doesn't seem to be able to process her thoughts. When I told her that mom and I were coming she said she wouldn't be there. Her husband assured her that she would still be around. In the meantime I'm trying to get church bulletins and a newsletter done before I go as I just started working part-time at church and have no backup. I'll just have to ask God for the strength to get me through this. Right now I feel more like screaming.
     All of your prayers would be most appreciated. Karen K. karenk@muscanet.com


Pam, October 20, 1999 - Hi, I'm new on this site and am learning all kinds of new things. I think I may have CHF, and I've taken Imipramine for approximately 8-10 years. I no longer take it. My symtoms are fatigue, shortness of breath, a spacy feeling in my head, swelling of hands, feet and ankles, and palpitations. I have an appointment to see a cardiologist next Tuesday and am eagerly awaiting the appointment. I just over all feel lousy with no stamina. Pam. morton@eac.cc.az.us


Ruth P, October 20, 1999 - Hi everyone, It's been months since I posted. I was without a computer for 6 weeks, then a dear friend was in the hospital for a month and finally died of cancer. Then my elderly aunt (I am the only niece) was in the hospital for 5 weeks. We took her husband up every second day and she was, and is, a complaining, shrewish person. Guess what? I ended up in heart failure 2 weeks ago. I spent 2 nights and 3 days in the ER and then 3 days in CCU and another 4 days in the cardiac ward.
     I finally took the advice that I have read so often here and fired my cardiologist. He had asked me to be in a study called the CHARM study and took me off Cozaar for 2 weeks before I entered the study. Then for 2 weeks I was either taking a placebo or Cadestrane. I was getting steadily worse and the summer had been so strenuous that I woke up one morning fighting for each breath and in dreadful pain. I am not the kind of person who hollers but I was sure hollering with that pain. Anyway, I am now on Coreg and Coversyl. I had asked my doctor about Coreg when I first heard about it here but he kind of poo-poohed and said that with an EF of 33%, I wasn't ready for it. I'm now down to 20% but I actually feel better. I am a little lightheaded and weak-kneed but that terrible exhaustion has disappeared. Moral of the story - listen to your body and if you are not comfortable with your treatment - change doctors.
     Thank God for paramedics and ER staff; They were the best. I am now reading all the posts and my prayers are with you all. One of these days I may even catch up on the archives. Ruth P. rpow@total.net


Jim, October 20, 1999 - Hi, I hear a lot of people on this site recommending a different cardiologist if the one you have is not taking the time to talk to you. Well, mine is a jerk and a legend in his own mind. He seems to have the opinion that if you don't have a medical degree, then you have to be stupid. What I would like to know, is does anyone know of a CHF specialist in the St. Louis, Missouri area? Preferably across the river in Illinois but I am willing to travel to St. Louis. Thanks. clocker@prodigy.net


Claudia, October 20, 1999 - Hi, Can anyone tell me the differences between pericardial effusion, myocardial or endocardial? Is any one worse than the other two? Also, what is generalized diffuse hypokinesis? I got a copy of my echocardiogram and am trying to understand it. It says the LV Dimension--Diastole: is 7cm; does anyone know if that is large? I would be grateful for anyone that might be able to help me understand. I am here everyday reading, trying to understand what is happening to me, and everyone else here. I hope you are all having good days. Claudia, EF 15%. CMSchm@aol.com


Jon's October 20 reply to Elton's October 20, 1999 - Hi Elton, Diuretics can cause gout. Hyperuricemia - excess uric acid in the blood - can occur and gout may result. As with other diuretics, there may be a temporary rise in serum creatinine, uric acid, cholesterol and triglyceride levels during Lasix treatment. The raised levels of serum creatine can led to gout. If you take a diuretic and develop gout symptoms, you definitely need to see your doctor. I think Al H has experienced this. Maybe you can write him and see how he made out. See his bio for his e-mail address. Jon.


Jon's October 20 reply to Claudia's October 20, 1999 - Hi Claudia, I'll take a stab at this but will welcome any corrections - I'm not a doctor. I took all this information from medical dictionaries linked to my Links page, which is a great resource, if I say so myself. ;-) Also, be sure to check the Medspeak page for medical terminology questions. General hypokinesis means that your heart doesn't move very well - it is "stiff." Perfusion roughly means amount of blood flow. The rest sort of follows from the definitions below. I hope this helps.

endocardial
having to do with the endocardium
endocardium
a thin serous membrane lining the cavities of the heart
serous
having a thin watery constitution
myocardial
relating to the middle muscular layer of the heart wall
pericardial
having to do with the pericardium
pericardium
the sac of serous membrane that encloses the heart. It has 2 layers with pericardial fluid in between those layers.
epicardial
having to do with the epicardium
epicardium
the part of the pericardium that closely envelops the heart

Joe S, October 20, 1999 - Hi, It's now been over 5 weeks since I left the foggy coast of California and moved to the eastern Sierras with a dry climate. I'm currently at 5500 feet, which caused some concern. I am very happy to report that I am feeling better than I have in a long, long time. I have no more wheezing in the morning and very little coughing. I don't even seem to be experiencing any fatigue and I have increased my morning walk to almost 3 miles.
     Another minor point is my pharmacist decreased my potassium from 20meq to 10, and gave me twice as many at half the price. I inadvertently kept forgetting the second dose and amazingly still feel great.
     Seventeen years ago I moved to this area because of my son's chronic asthma. He was on medication 5 times a day and an inhaler about 5 times a week. The medication back then even stunted his growth. After just 3 days in Carson City, Nevada, he was able to stop all his meds and has never had another symptom, even after moving back to the coast of California. Go figure. I wonder what the effect of all that moist climate is? Joe S. JES@StevensonLighting.com


Connie R, October 20, 1999 - Hi everyone, I know it has been a while since the Atkins' diet has been talked about, but I was wondering if anyone who went on it actually stopped taking their Lasix, as he recommends in his book? crussell@parallel.park.uga.edu


Jeanette, October 21, 1999 - Hi all, I just got back from the doctor's and he has put me on an anti-depressant drug called Zoloft. My depression has been going on for a while now but I didn't know that it was even depression until I talked to him about it. I am on 50mg for one week and then up to 100mg. Is anyone else taking this drug and if so, can you tell me what kind of side effects I might expect? My doctor says this depression goes hand in hand with heart problems like DCM. I pray for you all daily and hope all is going better for all of you. Love in Christ, Jeanette. jandtuf@aol.com


Luc D, October 21, 1999 - Hi, I just saw that the bio page is gone and it's something else that I see now. Everyone's bio is back on the new bio page, where is mine? I'm still here you know, I'm not dead yet!
     I'm having bad days again, with too much chest pain. I really don't know what to do anymore. I hope that someday one cardiologist will know how to help me with these chest pains!
     I wish you all the best. Take care. Your Belgian friend Luc. luc.deseins@ping.be
 
Jon's Note: Hiya Luc. You're still on the bio page, which is still there! Try http://www.chfpatients.com/biosgate.htm


Diane P, October 21, 1999 - Hi,After 2 heart attacks and a quadruple bypass in the last 12 months, I had a stress test Monday and my caridologist told me that this was as good as I would get; Too much heart muscle damage from the last attack. Yuck! My EF is 35%, I'm on 40mg Lasix twice a day and another diuretic I can't spell, 10mg Vasotec twice a day, 0.25mg Lanoxin and aspirin. I am so tired. I asked for oxygen and I am going to try to get pre-certed. I hope it might help. I have so many things I want to do and no energy to do daily things. I have 3 beautiful horses in my back yard that I was training to show; finally my childhood dream coming true, and then I got CHF to deal with. I want some energy back. I don't want to sleep 10-12 hours a day and still be tired. Any sugestions would be graciously appreciated. Fifty-one and frustrated.
fjpage@n-jcenter.com


Pat D's October 22 reply to Diane P's October 21, 1999 - Hi Diane, Have you tried Ginseng? I've been taking it for a few months (Siberian Ginseng) and have noticed a significant difference in my energy level. I'm not taking naps every afternoon now, although sometimes I still have to, but prior to starting it, I took 2-3 hour naps every single day, so it's a definite improvement. I tried Korean ginseng and it wasn't as effective as the Siberian Ginseng. I have no idea why. You might want to try the different ones to see which one is right for you. CoEnzymeQ10 increases my energy level also. I'd like to hear how you do with it. My e-mail address is patj98@yahoo.com. Please take good care of yourself. Pat D.


Pam E, October 23, 1999 - Hi All, I don't post very often but I am about to have another echo and GHPS in the middle of November. Please wish me luck. This is 6 months after starting beta-blockers. Also, I have noticed my eyesight has got markedly worse in the last couple of months. I fronted the cardiologist about this and he said it could be the Lasix, which can reduce the intraocular pressure, which could change my sight. Just food for thought for those who think it is happening to them. Also, those who remember from my last post that I was going to Tasmania - we had a wonderful time. Take care, Pam E from Australia. gpcs@fastlink.com.au


Jo, October 23, 1999 - Hi, Thanks to all of you who have been remembering me in your prayers! I came through the latest cath with flying colors. I and my family are very confused now, though, and I thought someone here might be able to shed some light. The doctor who did this cath - not the one I thought was doing it - told my family afterward that he found nothing wrong. Then he said for me to stay on my heart medications. What? Is it possible to have 7 years of documented heart disease and then have it vanish? Although I truly believe God is able to do this, I have been having increasing shortness of breath and chest pain and fatigue. I just don't know what to think of this. I am to call my doctor next week so maybe he will be able to answer my questions but I was wondering if anyone else has ever had a return cath that had completely different results. If it is a miracle, then I thank God but right now it is feeling more like I am back to square one again. If you can shed some light on this, I and my family would very much appreciate it. Thanks again for your concern. I am praying for all of you. jt2llcubby@webtv.net


Jon's October 23 reply to Jo's October 23, 1999 - Hi Jo, It is likely the doctor was referring to blockage of your coronary arteries, since that is the primary diagnostic purpose of a cardiac cath, along with pressure measurement. We don't have any information to guide us in guessing what he meant but that's my shot in the dark. :-)
     To everyone, I am updating all my test pages and am giving them a new "look" and would appreciate any comments (by e-mail, please). I have no idea whether the look is suitable and would really appreciate comments for better or for worse! Thanks. With this page being pretty slow lately, I've had more time to play with my other pages. I dunno if that's good or not! <g> Jon.


Luc D's October 23 reply to Jon's October 22, 1999 - Dear friend Jon, It seems that I have made one mistake about the bio page and I'm very sorry about it. I don't know why I didn't find it anymore - too nervous, I guess. I also want to wish you and your family good days with more luck! Your Belgian friend Luc. luc.deseins@ping.be


Jon's October 23 reply to Luc D's October 23, 1999 - Hiya Luc, No apology necessary! Hey, with geocities the way it is, half the time I don't know myself whether I will find one of my own pages properly in place! <G> Jon.


Brenda George's October 24 reply to John Len's October 17, 1999 - Hi, I cannot tell you how long porcine valves last but I received my homograft (human) valve in 1973. I have just had my 26th anniversary and I am hoping for a few more years yet. The aortic valve is leaking and has been for a long time. When I had the surgery, I was 18 years old and was told it would last about 7 years, so I think the doctors cannot always know and it is quite an individual thing as to how long they last. A year ago I was diagnosed with CHF and I am still finding out my boundaries, and how to keep well. b.e.george@inet.net.nz


Jon, October 25, 1999 - Hi, FormMailer has shut down their free forms server/script service without notice. That means my forms won't work. I had no say in this and certainly did not contribute to the Internet spam that caused them to close down. This is a direct result of spammers abusing free servers. Sorry, but until I discover a new free forms server with script, this forum is closed. I am just too tired from my heart failure to run it purely through e-mail. Let me know if you find such a service and please check back regularly to see if The Beat Goes On does indeed go on. It is a true shame to close the message boards after a 4 year run of great success helping people but until I find technical support, I must do so. Bye for now - all other pages will continue to be updated and the mailing lists will continue. Jon.


Jon, October 26, 1999 - Howdy-doo, It's me again already. Weeeell, let's try this form script/server out and see what happens, shall we? And to all who e-mailed me, a large and sincere thank you. You're a great bunch and that's no joke! Jon.


Leland Y, October 26, 1999 - Hi everyone, October has not been a good month for me. We all know about the bad times for us CHFers and that cyclically, we will have good times also. Well, the good times never came around. I called the cardiology department and they said it's not a heart problem. I saw the rheumatologist and they said it was not an immune reaction because the blood test (ESR) was negative (6mm). What to do now?
     Going backwards, I was placed on 25mg spironolactone daily on October 13. The dose was reduced to 12.5mg on October 21. The bad days blended in so subtley with the drug reaction that no one figured it out until I decided to stop the spironolactone after the dose on October 21. By the next day, I was starting to feel somewhat better. By Saturday morning, I was well enough to travel to San Diego (100 miles) to watch our g-ddaughter perform at her school's music fair. Today, Sunday, it's great to be up and running around again. I will contact my cardiologist Monday to report the adverse drug reaction.
     The discomfort and pain starts with headache in the occipital region to the shoulder girdle to the lower spine, extending to the hips, with legs feeling like wearing clasp iron. Here's one guy who will never take spironolactone again. Here's hoping that those who have had troubles with it, maybe this will help. Luv and salutations to all. Leland. LLYee@surfside.net


Doug K, October 26, 1999 - Hi Jon, and all, I'm sorry to hear that you aren't feeling all that well. I didn't realize that spammers were able to send info to a form but in this day of technology, I guess it goes without saying. Good luck, I hope this form server works out for you. If you do have to shut down the forum for whatever the reason might be, a great big thank you from me for all the help that you and this group has been to me. dgknuth@earthlink.net


Jana B, October 26, 1999 - Hi, My computer has been down for a few weeks and I started working again, subbing for the schools here. I like subbing, then if I am sick or have an appointment, I just don't take a job that day. I am "long term" subbing this week, which just means I will work all week. <lol> I recommend subbing for any of you that have good and bad days, which seems to be about every one of us! It works out well for me. I can't get Disability because I don't have enough work credits in. Most of my jobs have been for the county or schools and they don't pay into Social Security. I wish I'd known that sooner. Anyway, I hope everyone is well. Jana. JByers4u@aol.com


Al H's October 26 reply to Jon's October 26, 1999 - Hey, To quote you Jon, "And to all who e-mailed me, a large and sincere thank you. You're a great bunch and that's no joke! Jon." What about those of us that did not e-mail you? Are we included in that "great bunch and that's no joke?" Al H. bobal@hotmail.com


Jon's October 26 reply to Al H's October 26, 1999 - And you would be Al who? Do I know you? Jon. <LOL>


Kenneth Dvorak, October 27, 1999 - Hi, One year ago after my echocardiogram, my cardiologist told me that my EF was below 20% and he figured this year I would probably be around 10 to 14%. Well people, I have been taking CoQ10 for one year and even though I can't prove it, guess what, because of "Jon" and all the useful information posted on his site, I had a MUGA done instead. Holy Moly! What a difference. I am not 10 or 14% and because of the better quality of a MUGA over the standard echo, and the use of CoQ10, I am 36% today. Let me add that I am also taking 26 pills a day of other meds, so I can't speak for you but I think it beats death.
     You see, 5 years ago they gave me 4 days to live if the meds didn't work. Since then I read what Jon has put out and I told - not asked - the doctors what meds I wanted to try. I have also had another sleep study done. As usual they screwed it up. However, I will be getting a machine to purify the air I breathe when I sleep. Due to the study, they finally were able to prove - which I told them 5 years ago - that I stop breathing at times. They discovered that my oxygen saturation drops to 73% during my sleep. So I am finally looking forward to actually going to sleep. Sincerely, Kenneth D. savage@sd.cybernex.net


Staci H, October 27, 1999 - Hi Jon and everyone, Between thinking this forum was going away and finding a snake in our tv room last night (a very much alive snake), I don't think I'll ever be the same! I'm glad that you're back, Jon. I hope you enjoyed your vacation! <lol> Take care everyone, and God bless. Flamioli@aol.com


Erica V, October 27, 1999 - Hi, Can someone please tell me what a coronary angiogram is? If possible, also explain the procedure. Thanks! erica22@hotmail.com


Jon's October 27 reply to Erica V's October 27, 1999 - Hi Erica, An angiogram is done duing a heart cath. It is the part where the dye is injected and a series of x-ray pictures taken of the heart and its arteries. See this page for details. Jon.


Lydia Moore, October 27, 1999 - Hello all, Jo, I hate to have to go this route but I tried to e-mail you at your address: jt211cubby@webtv.net and had no luck. I am frustrated because I would really like to communicate with you. I received your letter and I am so anxious to get back to you. Lydia Moore. gemini49z@yahoo.com


Jack, October 27, 1999 - Hey guys, A little short of 3 years after I was diagnosed with IDCM, a significantly enlarged heart, an EF of 15%, a command to stop smoking, drinking and eating <g>, to lose weight so I might get placed on a transplant list. Well, I got the results of my last MUGA: EF 65%, all heart functions normal, heart normal size, blood pressure low normal and a request to come see me in a year. I just wanted to say, "It can happen but even if it doesn't, look how long most of the people on the forum have been around waaay past the dox expectations." What did I do differently? Probably nothing. Cause stuff happens and sometimes it happens in a postive manner. Jack. maddjak@hotmail.com


Phyllis A, October 27, 1999 - Hi, To Jon and Karen, my prayers are also with you and your family. Thanks to you all who sent me e-mails to say you are praying for me and my Dad and family! My Dad is doing much better, praise the Lord. It must not be his time yet. His vital signs are great, his labs are great, and they have started to wean him off the respirator. He breathes a lot on his own now. This is great news, since last Monday night he coded 3 times and now he has no brain swelling and no blood on his brain from oxygen depletion. He is also sitting up each day these last few days. The power of prayer. They call my Dad a miracle in that hospital, so keep praying and I will also pray for you all as I do each and every day. phylcasurv@msn.com


Luc D, October 28, 1999 - Hi Jon, and other people here on this wonderful heart forum. I'm sorry to hear that you aren't feeling well. I know what it's like to be sick and down. I have had some very bad days myself, too. You will all know this by now, don't you?! I hope you will not have to close our heart forum. Where would we go without this forum and you? If you do have to close this forum down, I also want to thank you with all my heart for everything that you have done for us all! I have found very good people here who became my good friends and I want to thank you all. Take care my friends. Sincerely, Luc Deseins from Belgium. luc.deseins@ping.be


Joyce M, October 28, 1999 - Hi, I have CHF. I got real weak one day and had a daughter take me into the emergency room. They had to remove 6 pounds of fluid from around my heart. Does anyone know why fluid collects around the heart when you have CHF? Also, what are foods you should eat and should not with CHF? I feel weak most of the time. I wish I had more energy. I never dreamed heart failure would zap energy out of me. Please e-mail me if you can answer these 2 questions. Thanks. Joyce McCollum. dorothylea@excite.com


Pat Ryan, October 29, 1999 - Hi, I have been diagnosed with CHF at age 42. I had radiation treatments for lymphatic cancer at age 25 in 1982. Recently, my left leg goes numb from the knee up the thigh. I take Lasix, Lanoxin and Hyzaar. I lost about 20 pounds of fluid that was built up in my ankles and feet, but now I have weird feelings in my leg and occasional numbness that comes and goes and lasts just a few minutes. It seems to go away if I sit down and bend the leg. Does anyone have a clue what this might be? Helpful advice is hereby requested. Please reply. Thanks, Pat Ryan. patjryan@aol.com


Lisa H, October 29, 1999 - Hi everyone, I have been just diagnosed with asthma on top of everything else. Does anyone else have asthma? Just breathing with CHF is difficult enough some days; how much effect will asthma have on that? I'm kinda upset about this, just more and more medications and things cropping up. I know God isn't supposed to give you more than you can handle, but this is cutting it pretty close. Lisa. wthall53@aol.com


Jons' October 29 reply to Lisa H's October 29, 1999 - Howdy-doo Lisa, I have no idea about the asthma angle. Be sure to check the Me Too! page for others with the same problems.
     On another note, God gives me a lot to do and hasn't given me the health and energy to do it easily. Still, it isn't more than I can handle if I follow His directions for coping, and hand over my burdens to Jesus to carry for me. I too often try to handle my burdens all by my lonesome and that never works out for me. Then, it finally gets through all that bone between my ears that I need to rely on God to get me through each and every day, and - although I may feel no better physically - I am able to "handle" it. For what it's worth. :-) Jon.


Jamie S, October 29, 1999 - Hi, Just to let any newcomers know, I was diagnosed with PPCM and RVOT (right ventricular outflow tachycardia) in December of 1997. My EF was 30% with some LV enlargement. I was placed on Coreg and Coumadin. To make a long story short, I stopped all meds per my doctor in January of 1999 due to improvement. My last EF in March was clocked at 74% with normal function. From start to finish, it was 16 months. With the biggest improvement being after 6 months. So hold on to your faith, educate yourself and your doctor if need be, and keep coming here. Be well. Jamie. JamieDan@prodigy.net


Jamie S, October 29, 1999 - Hello Everyone, I just wanted everyone to know that there is an article on heart transplants in this month's LIFE magazine, November, 1999. It' s a good read. It follows a variety of different people through the process plus information regarding availabliity, medical bills, etc. Jamie. JamieDan@prodigy.net
 
Jon's Note: Plus, the cover is a picture of our very own Lisa M!


Wendy, October 29, 1999 - Hi, I just wanted to pass something on to anyone who might live where Lyme Disease is prevalent. My husband Mike has arrhythmia and cardiomyopathy. I took him to a Lyme Disease literate doctor and the doctor has a strong feeling that Mike's case is Lyme-related. As a matter of fact, the doctor's father was originally diagnosed as cardiomyopathy. We will know if it is definitely Lyme-related in another couple of weeks. He is now on some pretty powerful antibiotics. On his next blood test we are hoping to find dead Lyme bacteria. I will keep you posted but I do believe this is something to look into. I received information from the Lyme Disease Foundation that specifically said Lyme Disease can cause cardiomyopathy, however, the kicker is it can be reversible if caught early and treated with antibiotics. As I said, I will keep you posted when my husband gets his next blood results. Wendy. Pittfarm@aol.com


Frank M Smith, October 30, 1999 - Hi, Since I refuse to pay an exorbitant sum for having my blood serum level of ubiquinone assayed, I have chosen to take 300 to 450mg of CoQ10 for the past 3 months, and it does a good job in helping my fatigue level to stay low. I am currently buying a 150mg softgel from Sundown vitamins in Boca Raton, Florida, for $0.77 each. However on 12/1/99, the price goes up to $0.97 cents each. Since I take up to 450mg a day, and no one really knows what their dose should be without a blood assay, what is the answer, and does anyone know of a more competitive price than the price I have to pay? Sincerely, Frank M. Smith. marquasmith@mailcity.com


Lydia Moore, October 30, 1999 - Hello Jon, I am so sorry to hear that you have not been feeling well. You are not alone. I wanted to ask you if that heavy weary feeling in the chest is common with CHF. Last night I had a hard time breathing laying down and I didn't sleep all night. I also have insomnia and RLS and I know you have these problems as well. I guess I just need to know that this is normal and that I am not alone. It can get scary. I hope your site stays open and am praying for that. You have been a blessing to us all and I am so grateful to you. God bless you Jon and better health to you and all of us. Lydia Moore. gemini49z@yahoo.com


Jon's October 30 reply to Lydia Moore's October 30, 1999 - Hi Lydia, I have found that limiting my sleep to 8-9 hours per sleep session is helping my insomnia a little. I always slept as long as possible before - up to 26 hours at a time. I assumed I had a sleep deficit from the extremely long periods of wakefulness I went through. With prayer from our own support group here, my prayers and the grace of God, I have had a few days of near-normal sleep/wake periods and am slowly feeling a bit better. I do not recommend this to anyone but wanted to relay my own experience. I mean I don't recommend limiting sleep. I do recommend prayer! <g>
     My foot and lower leg pain is worse. My new doc and I are about to go around and around about it, I think. Doctors, I must confess, drive me a bit crazy. They seem to be taught in the USA that they are the boss and we are all stupid about our own bodies. Pretty lame.
     About that inability to breathe lying down, that is definitely common in CHF. It really makes it tougher to get to sleep, and to stay asleep once you get there. I sleep on 4 pillows right now, 2 the regular way, then one at right angles, parallel to my body so my side is partly on it, and then one more on top the same way as the first 2. If you start having more trouble with chest "tightness" or it happens when you are not lying down, you need to check with your doctor because it might be angina. Jon.


Cecil's October 30 reply to Elton's October 20, 1999 - Hi Elton, I have gout caused by taking Lasix, too. I went to an arthritis specialist and he took liquids from my joints and a blood test to determine the level of uric acid. After all these tests and the determination and explanation of gout, and how it affects one, he prescribed allopurinol. This drug can intially cause gout symptoms itself in the early stages of taking it so he also presribed colchicine to offset the symptoms. Allopurinol apparently cleans out uric acid. Anyway, that along with Celebrex seems to have done the trick. Unfortunately, as with most drugs, you develop another problem. Now my kidney function is somewhat screwed up because of the Celebrex. When I quit taking it, the pain returns. So how you win is iffy. I advise seeing the right doctor and then having regular blood tests to measure the bun levels and uric acid levels. I hope this helps you and any other gout sufferers out there.
     Also, someone sent me an e-mail which I tried to respond to but was dumped by my computer so I don't know if it got off. The e-mail was also eliminated. Cecil. Cecil3744@aol.com


Al H's October 30 reply to Cecil's October 30, 1999 - Hi Cecil and Elton, Listed below are just 3 of the many links I found by searching for "gout and uric acid". I have also suffered from this, however it is under control. At the time I was having the problem, I do believe I was mixing diuretics, alcohol, and a poor diet. This is not necessarily the case for all gout sufferers as shown in some of these links. My doctor told me that I might continue to have this problem after a heart transplant, based on some of the medications I would have to take. Since I have not had the transplant yet, I cannot provide an expert answer. Allopurinol was the medication I was prescribed to ease the pain. I had no side effects with it but I do not take it regularly.
http://www.rnceus.com/renal/renaluric.html  Al H.


Gene S' October 31 reply to Jon's October 30, 1999 - Hi, I also have severe leg pain at night and I take six 400mg capsules of gabapentin each day plus every 6 hours I take two 50mg tablets of tramadol. That seems to help with the pain. The gabapentin is a seizure medicine but it works on the leg pain. The neurologist prescribed it for my headaches but I noticed that it helped the legs more. The pain doctor at the Dayton VA clinic said that the Tramadol dosage was the highest dosage he would prescribe for anyone for life. I guess he is telling me the truth. I still have severe pain from the degenerative arthritis but the RLS is better. Maybe this will help. Gene, age 50, EF 30. Rockman28s@aol.com


Jon's October 31 reply to Gene S' October 31, 1999 - Hi Gene, I also take 100mg Ultram every 4-6 hours during the day for my foot/lower leg pain, and have done so for about 3-4 years so far. It helps enough, even though it never completely eliminates the pain. I have no leg pain at night unles they already hurt when I go to bed. I do get RLS symptoms at night but the usual meds for that have sruck out in my case due to extreme side effects. My new doc seems to give up very easily, so we are about due for a long talk about his desire to get my physical quality of life on track. ;-) After my sessions with Sinemet, I am extremely hesitant to try nerve/brain chemical blockers for pain. Jon.


Kim S, October 31, 1999 - Hi, I recently heard from SSD, yet another denial. I often wonder if the "doctors" making the decisions on these cases and appeals are as qualified as we are led to believe. I am so frustrated but have been urged to continue on with the appeals. This time I will most definitely have a lawyer on my side. I almost doubt that I have the time and energy to pursue these appeals but I've never been one to give up or quit. I'll continue to keep posted. lalakimmie@aol.com


Jon's October 31 reply to Kim S' October 31, 1999 - Hi Kim, Hang in there! Once you get an SSD lawyer on your side, your only task will be calling him every week to check progress. He should handle everything else. When paperwork needs your signature or input, he should be there to walk you through it, step by step. It's one of the reasons I urge peope to get a lawyer right off the bat - stress reduction.
     Those SSD doctors simply have no incentive to approve anyone for Disability. They work for SSD, not you, not for themselves. SSD wants to pay out as little as possible, so,... Neurologists, neurosurgeons and internists can review any type Disability claim. All of SSD's doctors are internists, as far as I can tell. The other 2 types of doctor can make better money on the "outside" in the "real" world. <g> Until SSA is forced to properly weigh our own doctors' evidence - doctors who have actually seen us - there will be no fairness. Thus, the need for lawyers. Hang in there, though. Now that you are retaining an SSD lawyer, your chances are a whole lot better - no joke. Jon.


Ginger, October 31, 1999 - Hiya's, I need some help, please. I know some of you have either gone through chemotherepy or know someone close to you who has. How in the world did you get them to eat and what did they eat? I cannot get my sister to eat anything, and it's making me nuts. She has cervical cancer that spread to her pancreas. If anyone has any ideas on how to get someone in her condition to eat, I would love to hear them. The only thing I have any luck with is Ensure and it's not enough to keep her home for long. Thanks in advance. I am grateful to you all for your support and prayers. Jon, I am very glad to see you stayed here. It would have been a great loss to all if your place closed. Hugs, Ginger. mystery@laker.net


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

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