The paperwork never ends The Archives
November 1-15, 2000 Archive Index CHFpatients.com

Jon 11-1      back today
 
Robin Lynn's 11-1 reply to Carol M's 10-30      welcome, coping, where's Lee R?
 
Anna's 11-1 reply to Barb's 10-30      thanks, SSD question
 
Carol M's 11-1 reply to Jon's 10-30      update, seek advice on something
 
Lee R 11-1      just checking in
 
Teri S' 11-1 reply to Randy's 10-26      things to be aware of - MVP experience
 
Teri S' 11-1 reply to Jim L's 10-28      fluttering experience
 
Mike 11-1      EF questions
 
Wayne S 11-2      CHF is tough! How does an ICD shock feel? & more
 
Rieale 11-2      is it okay to feel my ICD move around a bit?
 
Tony's 11-2 reply to Mary's 10-30      heart thumping possibilities
 
Robin S 11-2      is anyone on milrinone or dobutamine? questions
 
Trish R 11-2      prayer request
 
Ruthie A 11-2      questions for fellow diabetics
 
Rick M's 11-3 reply to Ruthie A's 11-2      coping with multiple illnesses
 
Bill D's 11-3 reply to Wayne S' 11-2      ICD info Url
 
Laurie A 11-3      update on lungs & heart
 
Davida S' 11-3 reply to Ruthie A's 11-2      dehydration, Lasix, fighting dry mouth
 
Davida S' 11-3 reply to Jim L's 10-28      doctors, Coreg
 
Dana J 11-3      new e-mail address, upcoming doc visit
 
Sue 11-3      hospital experience, transplant questions & more
 
Jon's 11-3 reply to Sue's 11-3      my views on transplant
 
Robin Lynn's 11-3 reply to Tony's 11-2      multi-vitamins, update, also to Lee R
 
Cristina Lisa 11-3      has anyone had mitral valve leakage or surgery for it?
 
Jon's 11-3 reply to Wayne S' 11-2      helpful links
 
Jon 11-3      if you've got some time,...
 
Jon 11-3      my replying to e-mails, and asking a favor
 
Bill D 11-3      seek CHF doc in Jacksonville, Florida
 
Frank S 11-3      Vasotec now has a generic counterpart
 
Sherrell G's 11-3 reply to Rieale's 11-2      ICDs moving around
 
Carol M's 11-4 reply to Cristina Lisa's 11-3      my husband's valve replacement experience
 
Tony's 11-4 reply to Robin Lynn's 11-3      sensitivities to various substances
 
Tony's 11-4 reply to Jack's 11-3      sensitivities to various chemicals
 
Elaine 11-4      update - great news!
 
Barb L S' 11-4 reply to Anna's 11-1      SSD, inotropic drugs & more
 
Duane C 11-4      reaching out has really helped me
 
Jeff 11-4      seeking cancer support groups for friend's mom
 
Kim T 11-4      seek low sodium recipes
 
Robin Lynn's 11-6 reply toTony's 11-4      also how do I cope with family about this?
 
Beverly C's 11-6 reply to Sue's 11-2      gallbladders & LBBB, misdiagnoses & more
 
Wayne S 11-6      developing edema question
 
Joe S' 11-6 reply to Tony's 11-4      climate
 
Anna N's 11-6 reply to Barb L S' 11-4      thank you
 
Carol W's 11-6 reply to Laurie A's 11-3      frustrating, isn't it? and a question
 
John Len's 11-6 reply to Ruthie A's 11-2      diabetes tips
 
Shirley G 11-6      flu shot dilemma, what to do?
 
Jeanette's 11-6 reply to Kim's 11-4      low sodium recipes
 
George H 11-6      should I be worried?
 
Tony's 11-6 reply to Robin Lynn's 11-6      illness, family, coping
 
Tonya's 11-6 reply to Shirley G's 11-6      getting a flu shot & more
 
Tony's 11-6 reply to Joe S' 11-6      getting away from it all
 
Jeanette's 11-6 reply toShirley G's 11-6      flu shots mess
 
Jim 11-6      prayer request, update
 
Kim T's 11-6 reply to Jeanette's 11-6      low sodium recipes
 
Joe S' 11-8 reply to Tony's 11-6      living out west & more
 
Jon 11-8      if your post does not show up,...
 
Donna Z 11-8      getting a flu shot
 
Peggy's 11-8 reply to George's 11-6      see a doctor ASAP
 
Phyllis A 11-8      getting a flu shot
 
Luc D 11-9      heart transplant question
 
Mary Lou L's 11-9 reply to Shirley G's 11-6      getting flu shots
 
Conrad 11-9      can I do okay without a heart transplant?
 
Anita's 11-10 reply to Luc D's 11-9      heart transplant
 
Dana J 11-10      new doc, options, thanks & more
 
Robin Lynn 11-10      had ablation, have questions
 
Jon's 11-10 reply to Robin Lynn's 11-10      fractional shortening
 
Autumn 11-10      intro, seek others in same boat
 
Luc D's 11-11 reply to Anita's 11-10      heart transplant, thanks
 
Wayne S' 11-11 reply to Anita's 11-10      thanks for the post
 
Linda 11-11      MEDICARE RULES CHANGE WARNING!
 
Jon 11-11      bio e-mail addresses & thanks!
 
Sigmund B's 11-13 reply to Autumn's 11-10      hernia surgery experience
 
Jackie's 11-13 reply to George's 11-6      please see a cardiologist soon
 
Charles K 11-13      intro, finding low sodium foods, low sodium diet
 
Jackie B 11-13      seek diastolic CHF info & more
 
Jon 11-13      finding CHF doctors
 
Linda 11-15      Medicare procedures change
 
Marty's 11-15 reply to Sigmund B's 11-13      hernia surgery experience
 
Jon 11-15      getting that list Linda is discussing
 
Heidi J 11-15      good news update & more
 
John Len 11-15      good old Medicare
 
Jon's 11-15 reply to John Len's 11-15      rant about Medicare - just ignore this
 
Ginger 11-15      about this web site
 
Leland Y 11-15      good news update & more
 
Jeanette 11-15      sleep problems getting desparate
 
Jon's 11-15 reply to Jeanette's 11-15      sleep problems
 
Jon 11-15      my chat room
 
Josue 11-15      intro


Jon, November 1, 2000 - Hi everyone, Yesterday was a bad day. Better today. Jon.


Robin Lynn's November 1 reply to Carol M's October 30, 2000 - Hi there Carol, Welcome to Jon's Place. Please take Jon's advice and find a CHF doctor and please, please don't give up now! Look at how far you have come. There are so many options available now that can make your life livable again. I find it amazing that you survived all the problems you have had. I know you don't know me but trust me on this, you are here for a reason. Your children and grandchildren need you in their lives and I know you wouldn't want any of them to give up. I know you are tired. You also sound depressed, which at this point you have every right to be. Don't let it get you down, though. I call those times "fighting off the demons" and I pray that you will find the energy and faith to keep fighting them. I and many others here will be praying for you. God bless you and please get that spirit up and fighting.
     Has anyone heard anything about Lee Roush? I am praying for her daily. We all know it is not like her to just drop out like this. I am worried. God bless you Lee, we miss you. heartful99@hotmail.com


Anna's November 1 reply to Barb's October 30, 2000 - Hi Barb, Thanks for some encouragement that it's possible to get SSD with a higher ejection fraction. I've often felt I was doomed to work until I dropped, and it feels like I'm getting close to that a lot of days. Someone told me that it's a bit easier to be approved if you're 50 or older. Is there any truth to that? snowyegret7@excite.com


Carol M's November 1 reply to Jon's October 30, 2000 - Hi Jon, Thank you so much for the information you supplied. I went on the Net to find a CHF specialist in Georgia and there were none listed. I then called the AMA in Georgia and asked for names of CHF specialists in Georgia and they said they could only give me names of cardiologists in my area and that there was no listing for CHF specialist. Oh well. I think I have gone through all of the cardiologists in my area when my husband was first diagnosed with a-fib. Of course that is a horror story in and of itself. We saw 11 cardiologists before he was eventually correctly diagnosed with an ASD as well as a-fib. He subsequently had the ASD repaired in 1982. I checked and found that all of those doctors are now retired or have passed on.
     By the way, the cardiologist I have been using is not the one that gave me the amiodarone. I'm sorry for not making that clear before. Since the hospital near my home does not do cardiac surgery, my cardiologist referred me to a surgeon at a hospital some 60 miles from my home. After the surgery, when the arrhythmia problems began, the surgeon called in the head of the Cardiology Department at that hospital, who then gave me the amiodarone. My cardiologist is, however, the one who saved my life at the nearby hospital following the severe reaction to the drug. I am torn however. My husband and I both use him and it does seem that my husband receives more aggressive treatment. Then again, he has Medicare and I do not. I must budget my treatment, doctor visits and prescriptions, but enough of that for now. I think I may have come up with something that could possibly be a benefit to a lot of people.
     My husband recently underwent mitral valve replacement surgery, receiving a mechanical valve. He remained on oxygen in ICU for 4 days due to the accumulation of fluid in his lungs. While wearing the nasal cannula, (the tube going from the nose up around the ears and down under the chin), he developed sores on his ears which were very tender. The nurses in ICU kept putting cotton balls or tissue on top of his ears but they didn't stay put. The sores kept getting worse. I then made what I call "cannula covers" to cushion his ears and the sores soon healed. The ICU nurses and the respiratory therapist were so excited about these covers that they asked me to make more for other patients in ICU, which I did.
     When we got to the step-down area, he was still using the oxygen and nasal cannula. One nurse, upon seeing the covers, requested that I come to another room and see if the patient's relatives would allow me to make a pair for that patient whose ears were bleeding from the soars. I immediately put a pair on this patient's cannula and the expression on his face told the whole story. This man's son offered to pay me $50 for the pair because as he put it, "the expression on my father's face is worth every penny." Of course, I refused his offer. I told him that the look on his father's face was payment enough because I knew how he felt. I had seen the expression on my husband's face and I too had such sores once.
     When my husband was released from the hospital he had to have home oxygen. I continued to make cannula covers for him. On one of our visits to our cardiologist he was of course wearing his oxygen and the doctor commented on the covers saying that there was a huge market for this kind of thing. One of the nurses in his office commented that her mother was using home oxygen and her ears were scarred from the soars. On our next visit I brought several pairs for her mother. She has since told me that her mother loves them and that they are an answer to her prayers.
     They are easy to make and the materials are fairly inexpensive. I have tried to find an avenue to market these cannula covers but have been unsuccessful. Oxygen companies are not interested. Oxygen suppliers have exclusive contracts with oxygen companies. Gift shops in hospitals do not believe they would be worth the effort of stocking. I'm not interested in getting rich off of them but earning enough money to pay for the supplies and the making would be nice. Do you have any suggestions as to what to do next? If anyone out there has any suggestions or input on patents, marketing, copyrights, etc, it would be appreciated.
     Thanks again for any advice. It is a lot to digest but I'll work on it point by point. I know you're right about my family but it is hard to talk to them about my concerns and fears. I think I might be a regular around here from now on. seymour9@bellsouth.net


Lee R, November 1, 2000 - Hi, I just wanted to say hi to some great old friends. It has been awhile since I've checked in, and the void in my life is sinking in so I hope you'll forgive me. I have some good news and that is: no shock from my implanted ICD (defibrillator) for over a year. If any new people have ICDs or might be getting one, feel free to write. I've had good experiences with mine. Jon, what a great job you are doing. Bestest, Lee. LeeRoush@aol.com


Teri S' November 1 reply to Randy's October 26, 2000 - Hi Randy, I'm a 43 year old female who has had 2 heart attacks and was diagnosed with CHF in January of 2000. My EF was and is between 19-23%. I suffered the same complaints as you did last month. I was having this happen with lightheadedness and chest pain almost daily. The first thing the cardiodoc said was, "Are you sure you aren't depressed or anxious? Could it be panic attacks?" I was in the mood for an attack right then but I digress. The doc and mostly the nurse practioner have been playing with my meds a lot so I assumed it must be those. They said no. While upping my Lasix could contribute to the dizziness, it doesn't cause chest pain - or does it?
     Anyway, to make a long story short, I finally changed to another cardiologist and it took him exactly 3 minutes to discover that I have MVP (Mitral Valve Prolapse). It's not deadly or anything, more of a pain in the neck than anything else. It turns out that all the extra Lasix was indeed causing my chest pain and other symptoms. Had my other doctor bothered to really take a good listen to my heart instead of assuming and diagnosing me usually over the phone, this could have been avoided. We lowered my Lasix dose and a totally salt restrictive diet has been lifted marginally. It turns out that MVP throws a lot of symptoms at you when you are really dried out. It feels like a heart attack. Since I have had a couple of those, it was pretty alarming.
     Evidently, MVP doesn't show up all the time and is more prevalent in women. I don't really understand everything about it, but it's worth asking your doctor about, especially if you are on diuretics and have been increasing them and decreasing the salt in your diet. SSSAZ@aol.com


Teri S' November 1 reply to Jim L's October 28, 2000 - Hi Jim, I had that same problem when I first went on Aldactone. While it could be a myriad of problems, my doc treated me with digoxin for the fluttering and it stopped. Like Jon said, the Coreg could be too much though. Get a new doctor for sure and keep reading everything you can get your hands on. Good luck, Teri. SSSAZ@aol.com


Mike, November 1, 2000 - Hi, My understanding is that a normally beating left ventricle ejects 55% to 75% of blood capacity at a beat. I have seen this stated in another way, which is that any EF below 44% is not normal. Some place this subnormal beat at 40%. I am wondering if EF really is due the importance given to it and is merely a number. Mikemjx@aol.com
 
Jon's note: See this page


Wayne S, November 2, 2000 - Hello Everyone, Being tired is tough. Boy, I have good days and then I have bad days. I have been diagnosed for about 10 months now. My ICD (defibrillator) has never gone off. My biggest problem is adjusting to being a lot slower than I used to be. I sincerely believe that Coreg really helps and saying a small prayer every day helps as well. Living with this disease really changes one's lifestyle. I hope that everyone has more good days than bad.
     I am curious as to what an ICD feels like going off. I have heard from "not bad" to "barbaric." I lost my brother to this disease. In 1983 he had sudden cardiac arrest. This is the reason my defibrillator was implanted. It's my security blanket. I have a real fear of sudden cardiac arrest but I am thankful for the support I get fom my family as well as from this site. My doc is a pretty good guy for an HMO doc and I received SSD on the first try without a lawyer; amazing. I really just want to stay in touch with people who feel like I do. frances@blkbox.com


Rieale, November 2, 2000 - Hi, I'm part of the InSync ICD trial like Denise, except that I was just implanted a month ago. I am wondering if anyone could tell me whether it is normal for the ICD to move a bit. I was lying on my side and went to lay back on my back and felt it move. Should I call the electrophysiology lab or is this to be expected? Rieale@aol.com


Tony's November 2 reply to Mary's October 30, 2000 - Hi, Regarding the hard thumping of one's heart, I've reduced my harsh "thumping" and I have reduced my chest pain problems by about 90%. I did this by not taking my multi-vitamins, avoiding dairy products within 2 hours of either my verapamil or my Lanoxin and by not taking Pravachol. I think Pravachol conflicts with my Verapamil, so I am going to try and figure out a schedule for taking it away from my Verapamil. Prior to those changes, I was slowly reducing the number of episodes by:

  1. Separating my Verapamil and Lanoxin doses by 3 hours
  2. Avoiding direct contact with most chemicals
  3. Avoiding direct contact with certain allergens such as dust
  4. Avoiding direct, or close contact with various inks and "carbonless" copies
  5. Avoiding the dyes of new clothes, especially those with blue dye
  6. Avoiding materials that have had fire-resistant treatment
  7. Avoiding new sheets. I have purchased almost every different type of sheet available, and I cannot come in contact with any of them. My present sheets are falling apart. I am assuming that the problem relates to the fire-retardant chemicals but I am not sure. So I am trying to speed up the aging of new sheets

Now, for those of you who think I am nuts - perhaps you are right - but I have greatly eliminated episodes of harsh thumping, especially at night. I have a permanent a-fib, CHF, hypertension, cardiomyopathy and asthma. I have found out most of what causes my heart to pound uncomfortably, with related chest pains. It still does not like to beat properly. I still get a tight chest and get weak, disoriented, greatly fatigued, and have chest pains at times but at least one problem is under control. Perhaps over time my other problems will get better now that my heart isn't being attacked by harsh thumping. I thought that this might be helpful to others. Your thumping problems might not be caused by the same chemical or allergic irritants but by a process of elimination perhaps you could find out what causes your heart to react in this negative way. Tony. t0nyt@yahoo.com


Robin S, November 2, 2000 - Hi, I find it interesting that most people mention they are on milrinone rather than dobutamine. What is the difference and is dobutamine the least preferable? I would love to hear from anyone who is on one of these drugs. Is it helping? Thanks. RNStreaty@aol.com


Trish R, November 2, 2000 - Hi, Please keep me in your prayers. I am going to the transplant unit on November 3 for the results of the million and one tests they ran for my evaluation. rompers@oknet1.net


Ruthie A, November 2, 2000 - Hi everyone, What a week! I am getting a free overnight trip to see my CHF specialist since hubby has a job interview in the same city! Because of finances, I haven't been able to see him since April. To balance that good news, I just fired my PCP. She sent me to diabetes education classes - which were excellent - only to shoot down nearly everything they taught me! Go figure. She also would not listen to my concerns nor answer my questions regarding my care in light of my CHF.
     My sugars are out of control no matter how carefully I follow my meal plan, but the doc assumed that I was not eating properly, nor that was I exercising. I work out regularly and have done so for at least 6 months so my lack of control is not due to laziness! I even had a couple of bad CHF days that really messed up my sugar levels but that didn't matter to her so I fired her. Since I no longer have insurance and cannot afford to find a doctor who specializes in diabetes, I need to rely on the advice of other diabetics and just wing it until hubby can find work and get insurance again.
     So here are my questions: How do you keep your fluid levels under control? With my sugar levels bouncing all over the place, I get extremely thirsty. If I stick to my fluid restrictions, I become dehydrated due to the more frequent urinations but if I drink more to combat the dehydration I retain the fluids and my lungs begin filling up, causing SOB. What to do? I cannot increase my diuretics because they are at max dose now. I cannot allow chronic dehydration because that affects my heart rate and function. Any suggestions?
     I am not on any medication for my diabetes at this time so we don't have to worry about juggling that yet. Also, do you have more bad CHF days when your sugars are messed up? Or is this just a coincidence? I know you all are not doctors, but I will consider any ideas you experienced diabetics may have. Thanks, Ruthie A. rlaba51@yahoo.com


Rick M's November 3 reply to Ruthie A's November 2, 2000 - Hi, There are a lot of us double-trouble folks here, Ruthie, and most have had more experience than I. For what it's worth, help in the form of drugs is available to keep your glucose under control. Don't give up and don't try to solve your own problems; that's what doctors are for. rearadml@iu.net


Bill D's November 3 reply to Wayne S' November 2, 2000 - Hi Wayne, Lee Roush has a site devoted to ICDs. Go to http://www.heart-help.net/. Lee says her son mistakenly deleted it but it's still there. Maybe she can't get to it but it has ICD wearers' experiences. Bill D. billdog@gate.net


Laurie A, November 3, 2000 - Hi Everyone, I thought I would check in and respond to a few things I read tonight. First off, there are actually doctors out there who don't want you to concentrate so much on your EF. My CHF specialist at the University of Pennsylvania recently did a cath that showed my blood flowing well and he said this is what they are more concerned with. He told me not to worry about my EF. It is hard to do though when you read so much about EF. Jon's note: See the EF page for more about this
     Second I wanted to thank Madelyn J for my book. I have been sleeping so much lately that I haven't done much. Ruthie, your medal is on its way!
     My question has to do with fatigue. Through this past month, except for the last couple of days, I have been sleeping anywhere from 11-12 hours a day and sometimes a bit more. The past couple of days haven't been so bad but I was wondering about others who experience fatigue: does it come and go, excessively? I know we all are more tired in general. I also went to the lung transplant doc today and although he doesn't think I would require a lung transplant alone, if my heart goes bad again and I needed to get a new one I would have to have both a heart and lung transplant. He again explained how high risk it was and talked about surviving rates. Although I know they are not etched in stone, it still is very scary so I am just going to keep praying that my heart keeps getting better. Jon, You have an amazing site here. Thanks! Sarg0911@aol.com


Davida S' November 3 reply to Ruthie A's November 2, 2000 - Hi Ruthie, Have your CHF specialist give you a blood test that will check for possible dehydration. If you are dehydrated, can you retain fluid? When my husband with CHF took the blood test his doctor said he was a little dry, indicating dehydration, and he lowered the Lasix. You may want to try small sips of water and sucking on sugar free lemon candy to combat the dry mouth feeling until you can get some advice from your doctor. cavalier_1@msn.com


Davida S' November 3 reply to Jim L's October 28, 2000 - Hi Jim, First I echo all voices here that said get a new doctor fast. CHF is a very serious problem. It should never be taken lightly and it is a finicky ailment with good days and bad days. Coreg is a finicky drug also. My husband had to come off it after 4 months. Coreg needs to be monitored closely for side effects. I always ask the pharmacist for the manufacturer's information sheet that comes in the box the drugstore receives instead of the preprinted description by the drug store. The manufacturer's fact sheet has symptoms and risk in pecentage of getting specific side effects. Coreg has a hotline to report symptoms (to SmithKline Beecham, who is doing the post-approval monitoring in CHF treatment). When I called, they followed up with Dan's doctor to see if he was still on Coreg or had reduced dosage. cavalier_1@msn.com


Dana J, November 3, 2000 - Hello again everyone, I just wanted to let everybody know that I have a new e-mail address so after tomorrow, danajj2@aol.com will no longer be valid. I also have an appointment next Tuesday with a new doc, so wish me luck! Take care everyone and thanks for keeping the site going, Jon. I know it must be a lot of work for you. danajj@excite.com


Sue, November 3, 2000 - Hi, I read the posts almost daily and forget half of what I read. It must be the meds. I have a question for Jon, "Are you on a heart transplant list?" If not, is it because of personal or medical reasons? I would like to know your thoughts on the option of being a transplant candidate. I know it's not a cure. I was diagnosed in February of 2000 with cardiomyopathy after a heart attack. The doctors said the heart attack was from a blood clot since I had no blockage. My cardiomyopathy was probably from a virus since I don't smoke or drink. I was misdiagnosed too. I went to the doctor in September with SOB and fatigue. My family doctor after chest x-rays told me I had asthma. As I progressively got worse through the months, I went back to him again in February and told him I couldn't walk from my car to the door without resting. He again prescribed Proventil and Atrovent. That Sunday I had my heart attack and lived. I think my asthma doctor is still saying his Hail Marys.
     That week I had many tests done. My EF was 20%. I was referred to a CHF doctor and told I probably would need a heart transplant. What a shock! All that I knew was that I needed to get back to work. I had a mortgage and lived by myself. With the help of the good Lord, many friends, family and SSD, I have been able to keep my house. I just love my life now. I have time to smell the roses and I thank God every day for my wonderful life.
     I had gallbladder surgery June 1, 2000. What a story! I can only laugh about it because humor is also what keeps me going. I had been having mild upper back pain since early April. Finally at the end of May my girlfriend took me to the ER. My cardiologist insisted I spend the night so I could have tests run the next day. I had a lying down stress test done. The gastroenterologist thought I had some blockage in one of my arteries. I had another angiogram done. First I was going to have it done at 1:00PM. After taking drugs to relax me, the doctor had an emergency so I went at 4:00PM. I had nothing to eat or drink since midnight. I didn't want to drink a lot afterward because of the sandbag having to be on for 6 hours. When I came back from my angiogram, I was put in a different room.
     My new roommate didn't look or sound very good. At 10:00PM that night I asked the nurse for a fan to drown out my roommate's labored breathing. Seven minutes later, he died. After the nurses discussed what to do, they decided to call a code blue. Talk about excitement. My bed was by the window and her's was by the door. The doctor didn't pull the curtain all the way shut so I could see her face. I didn't look that way again. I couldn't move because I had the sandbag on until 1:00AM. They worked on her for 20 minutes, then everyone left. My side of the room was dark but her side was all lit up. I turned on the tv so I couldn't see her reflection in it. About 11:30PM the family came into the room so I witnessed their grieving. At midnight the nurse came in to take away my water because I was having another procedure done the next day. She asked me why I wasn't sleeping. I told her it was because they took my roommate away and I wanted to make sure they took the right patient. At 12:20AM the funeral guys came and got her.
     The next morning I was going to have a scope done to see if there was a blockage in my bile duct. I asked all morning when was it going to be done. My cardiologists insisted it would be done because I was on a restricted diet with no food or water since midnight again. Finally at 2:30PM the same nurse I had been asking all day when was I going to have the scope came in to tell me the doctor who was going to do it had the day off. Needless to say, I was there for nothing. They were geting ready to discharge me when the nurse started asking me about a stool sample from 2 days earlier. They had lost it! They had to call the nurse at home who was on duty 2 days earlier. I didn't have my gallbladder surgery until the next week because this day was Friday. I'll write sometime soon to talk about my surgery. fainth@core.com


Jon's November 3 reply to Sue's November 3, 2000 - Hi Sue, My reasons for not being listed are cuurently both personal and medical so to speak. I can't really reply to a request for "my thoughts" on heart transplant. The subject is so broad it would take forever to cover all pertinent aspects. If you have more specific questions, I'd be happy to tackle them one at a time. However, if you want my personal views, I'll need to know if you are a Christian or not. The directions my answers take depend on your perspective as well as mine. Jon.


Robin Lynn's November 3 reply to Tony's November 2, 2000 - Hey there Tony, I have been waiting for someone to mention problems with multi-vitamins! I had the same problem when trying vitamins and also once I tried CoQ10 and suffered extreme irregularities in my heart. I think that they (the meds) were working the way they should but my heart functions its worst with the least bit of stress, including activity. I am going for an EP study on Monday and God willing, the doc can zap most of this away. I thought for sure I was having a-fib episodes so I recorded an episode on my king of hearts monitor and it turned out to be a run of V-tach! I was shocked. Those little things don't even bother me much, they just take my breath away for a second. Now I cant even imagine what the big ones are! I'm almost scared to find out. Of course Murphy's Law is hanging over my head and I haven't had an attack yet to record. I hope I have one by Monday so I can say, "That's it!" Anyway, any prayers my way would be helpful as I plan to be home Monday night with my family.
     Lee R, I was really glad to see your post. Please drop in every now and then to let us who care about you know that you are well and ok. God's blessings to all, Robin Lynn. heartful99@hotmail.com


Cristina Lisa, November 3, 2000 - Hi, I recently found out that my mitral valve is leaking and also has a tear. I met with the surgeon this week and surgery is scheduled for Monday, November 13th. I wanted to know if there was anyone out there who has had similar surgery. I look forward to hearing from you. Thanks. rjlisa@bellatlantic.net


Jack's November 3 reply to Tony's November 2, 2000 - Hey Tony, Have you tried buying used sheets at thrift stores? How do you wash yourself, your clothes and bedclothes and your dishes without chemicals? Jack. maddjak@hotmail.com


Jon's November 3 reply to Wayne S' November 2, 2000 - Hi Wayne, Here are a couple of links I found on my Links page that lead to ICD sites that may help you. Implantable dot com message boards and The Zapper. It's a start. Also, check the Me Too! pages for others with ICDs you can e-mail. Jon.


Jon, November 3, 2000 - Hi everyone, I have some web site things I could use some help on. It's dull and boring - just checking links of all kinds on specific pages in specific ways. If you are interested in this (maybe if you have insomnia, it would help put you to sleep <g>), drop me a line. No skills needed except knowing how to clink links in a browser and send and receive e-mails. Your system type/ISP/etc makes no difference either; very basic stuff. Jon.


Jon, November 3, 2000 - Hi everyone, If you do not receive a reply to an e-mail you sent me, please remember that an invalid reply-to address will make my reply bounce, leaving me no way to contact you. Please try again. :-)
     Second, if anyone is Christian and thinks there is not enough good Christian music for young people out there, please consider voting for the band One April Day at the Flicker records web site. Flicker is a Christian label considering signing the band. Just click the button named "Rate This Artist" leaving the number 10 in the drop down list here. I know the band members and their music, and they are 100% truly Christian and making strides toward bringing young people to Christ. If I didn't know them personally, I wouldn't post a non-heart failure request like this but it's a favor to some friends (they even sent Linz a signed CD for her birthday this year), in whom I believe strongly. They don't - and won't - know I am asking this. Thanks, Jon.


Bill D, November 3, 2000 - Hi, I just fired my cardiologist! We simply didn't get along. He accused me of wanting to doctor myself. Who, me? <g> He said his patients let him drive and they were satisfied to be in the passenger seat and didn't ask questions! So I'm looking for a CHF specialist in Jacksonville, Florida. If any of you knows one, please get in touch. Bill D. billdog@gate.net


Frank S, November 3, 2000 - Hello to all, Some who have to pay out of pocket for medications and with no insurance coverage usually have to struggle to make ends meet. I must take an ACE inhibitor daily and the medication which my body likes best is Vasotec (enalapril). Some relatively good news came my way today, which I thought might apply to those who take Vasotec and must pay for it without any reimbursement. Enalapril is now available as a generic formulation and here is the big deal, for me at least: I was paying $1.28 for each 10mg tablet but can now buy generic enalapril 10mg for 50¢ each; so a 78¢ savings times 30 days is $23.40 a month, which will buy a lot of fruit and veggies. Another reason for my elation is that the pharmaceutical companies can no longer gouge us on this particular product. Later, Frank S. marquasmith@lycos.com


Sherrell G's November 3 reply to Rieale's November 2, 2000 - Hi, My first ICD was implanted in 1994 in my abdomen. It was about the size of your hand. After several months I noticed when I sat down that it tilted out. I questioned both the EP cardiologist and the product representative. They assured me that wasn't a problem since after the ICD is inserted, your body is supposed to create a vacuum-like seal around it.
     In early 1996 I felt a lump near the unit so I went to the doctor. X-rays determined that all my wires were knotted up from the extra movement. The loop was gone and the wires were so tight the tension had actually lifted my heart up, so it was emergency surgery time. They changed my device to one the size of a beeper and implanted it under my breast. It still wiggled around some and after 6 months started eroding. The area around it became red and tender. So it was back to surgery.
     This time it was placed in a pouch and literally sewn to my chest wall muscle. That was 4 years ago and it has not moved at all. I call it my entertainment center since it sits on a shelf-like flap of muscle. I think my case is very unusual. Most people I have spoken with have experienced no problems after the implant. I share this info not to scare you but just to caution you to watch the movement carefully and ask your doctor about it. sherrellgay@juno.com


Carol M's November 4 reply to Cristina Lisa's November 3, 2000 - Hi Cristina, My husband just had his mitral valve replaced with a mechanical one. It looks somewhat like a tiny carberator and there are several good web sites you can go to, where you can not only see them but hear them as well. My husband's valve is a Saint Jude valve. He is 63 years old and his surgery went well. His advice is that immediately after surgery, the best thing you can do is to do the breathing exercise faithfully and to cough a lot.
     He had a pacemaker put in and then 23 days later had the valve replacement surgery. He is in his seventh week of recovery and is still doing the breathing exercise and is doing very well. Yes, you are going to have some pain and you are going to be uncomfortable for awhile but it is worth it, says my husband. He says he hasn't felt this good in years.
     One of the neat things I have found is that he can't sneak up on me anymore. I hear him coming. He says he doesn't hear it and the doctor says that he is lucky because a lot of people complain that it drives them crazy until they get used to it. There are 2 different kinds of valves: organic (pig valve) which has a life of about 9 years and the mechanical valve, which has no life limit. The only drawback to the mechanical one is that you will be on blood thinners the rest of your life. This is not bad once you get the dose regulated. You just have to remember to always take it every day unless your doctor says otherwise, no matter what. Never miss a dose and then the next time decide to double up. That can be dangerous.
     Good luck and my prayers are with you and your family. Remember, the discomfort doesn't last forever and the results are worth it. seymour9@bellsouth.net


Tony's November 4 reply to Robin Lynn's November 3, 2000 - Hi Robin, Best of luck with your EP study Monday. It is interesting that both you and I get significant irregularities when taking multi-vitamins. In my case it was with the mega-dose vitamins. I don't know if I would react the same way with the standard one-a-day types.
     You also said that you reacted that way once with Q10. I have been taking Q10 for over 10 years. Once in awhile I'll get my heart thumping after taking Q10, expecially if I take it at night. I stopped taking Q10 for awhile but am now back on it. I think that the equation for the combination of events and chemicals that cause my heart to have increased irregularities is very complex.
     I know for a fact that the biggest trigger for my own irregularities depends upon what pollens and pollutants are in the air. Because the types of pollens and pollutants vary so much from season to season and day to day this provides an extremely complex moving target in my attempt to get better control over the episodes. This morning I put on my usual hand cream, which I use to counteract the drying effect of meds on my hands. Shortly after putting on the hand cream I became sweaty, sick to my stomach and weak. This lasted about an hour but is now getting much better. My only guess is that there are particles in the air today that react with my body's encounter with the hand cream. Who knows? But the coincidence is high, I think.
     On another note, I have been taking my blood pressure an average of 10 times per day for over 2 years and charting it in many ways - by hour, day, month, etc,..., with standard deviation. By doing this and working with my cardiologist, I have been able to additionally reduce my blood pressure by about 12 points systolic, and about 7 points diastolic. I first thought that my blood pressure would vary by the calendar season because of the different pollen seasons of the year but I was wrong. My blood pressure varies with nature's seasons, which vary year to year. During very green times, my blood pressure (and symptoms) is higher and during very dry seasons like it is right now down here in Miami, my blood pressure is lower. Of course, all of my charting and analysis gets thrown down the toilet when I don't watch my diet and salt intake. Anyway, I feel so much better being able to take control over part of this disease.
     Once again Robin, good luck with Monday's test, and take care. Tony. t0nyt@yahoo.com


Tony's November 4 reply to Jack's November 3, 2000 - Hi Jack, I have thought about buying sheets at thrift stores but I can't bring myself to sleep on someone else's used sheets. Nothing personal. <g> How do I wash myself? I use a hand soap, both for bathing and for my hair (what is left of it). I use an antiseptic mouthwash instead of toothpaste. We use regular Dawn liquid dish detergent for dishes and for the floors, and most other cleaning. We use regular detergent and softener for our clothes but no other harsh chemicals and cleaners come into our home. I use a combination of dish detergent, mouthwash and chewing tobacco juice for spraying our grass to protect against chinch bugs and fleas. We also use boric acid tablets in closets and other places to protect against insects and fleas. We don't use any insecticides at all, even though we have 2 dogs.
     There are some chemicals that I find fairly safe, such as dish detergent and clothes detergent. Most other cleaning chemicals can really have a negative impact on me. I find it all so confusing and complex that I just limit chemical use. It works most of the time. I also realize that depending upon what is in or not in the air, and other combinations encountered; a chemical that had previously caused a reaction might or might not cause a reaction on a particular day. To me, reactions by the nervous system and allergic reactions (which I think are related), are caused by complex environmental, chemical and food relationships. So the best cure for me is avoidance and limiting exposure, and staying completely away from what has positively caused a previous reaction. Jack, have a nice day, Tony. t0nyt@yahoo.com


Elaine, November 4, 2000 - Hi everyone, I don't know if any of you will remember me - Elaine from the UK - and my apologies for the delay in updating you about my situation. I have some great news: My cardiomyopathy has gone! I found this out in February of 1999 at a routine scan. I was discharged finally from the hospital's care in summer of this year. At first they told me I was incredibly lucky and that maybe my "pristine arteries" had something to do with it but at my final visit the cardiologist said that he'd now seen more recoveries and there's speculation that ACE inhibitors are capable of remodeling the heart. So there may be more hope than we've been led to believe in this illness.
     This forum was a tremendous help at a desperate time in my life and I wish you all well. I'll still look at it and may post if there's anything I can offer. elaineconnell00@hotmail.com
 
Jon's note: You're always welcome here


Barb L S' November 4 reply to Anna S' November 1, 2000 - Hello Anna, I apologize for taking so long. I just have not felt that great. My personal opinion is no, that being 50 or not being 50 has nothing to do with it. As Jon pointed out in a reply post to me, it's really our health care providers and our health care system that want us to buy into this stuff. What they want us to believe is something I never dealt with until I got sick, especially with CM and CHF. It is a very costly disease emotionally, mentally, physically, spiritually and let's not forget monetarily. I'm not saying there is no truth to it. Every state is different. I only have my own story. I became ill at 36 years old. I hired an attorney after almost 2½ years, who is enjoying the fruits of his labor with his piece of the pie. Finally, I was awarded in May of 2000. We have gone through a lot but always help each other and so far we've muddled through together.
     I hope you at least attempt to apply because as I sit here today I can honestly tell you that I am more sick than I was in August. Yet I have no clue what my EF is. It has been stressed to me that it means nothing. So I've fired every single doc and the only one I have now is my CHF specialist. It simplified things and my life is easier now. My legs swell every day and I ask for your prayers so I can enjoy the holidays with my family and not have them worrying every minute. I am doing everything not to be in the hospital and have spoken with my CHF specialist a few times this week to help make that a reality. I need to stress to everyone that's asking about EF that I am in the same boat as everyone here. Not until I changed to Mt. Sinai and to a doctor who actually listens, returns phone calls and answers all my questions did we know any better.
     Jon, I read Linz's poem and cried because it's so true. I was able to click instantly with that because my daughter Shanon was only 15 at the onset of this thing. At any rate, I shared it with my family and then went back to read it again and that's when I realized that Linz had written it. I'd like to thank her because my daughter cried, for the first time, in a very long time.
     Thank you to everyone who has kept Paula and Anthony in your prayers, e-mails or anything! Anthony will finally get his second opinion at Mt. Sinai and I am so grateful to everyone here for reaching out to her. I don't know that I would have her strength. If anyone wants to know how they are doing, there will be constant updates at http://www.geocities.com/miracleheart97/index.html. Right now they are on their way to Disney World and that's a miracle!
     Thank you to everyone for accepting my never ending e-mails. What I set out to do has been achieved because there are very caring people here. One last thing and this is vital. I am getting e-mails asking about dobutamine and milrinone and what I would suggest. I feel bad because I want to help anyone but I am no doctor. Plus, everyone has to realize that we could be sick at the exact, same time on an given day, with the same exact diagnosis, yet my CHF specialist will choose his way for treatment and someone else's CHF specialist may choose a totally different approach. Milrinone helped my heart pump and took some of the load off me. I came here to check on the 3 different meds asked about, and Jon has them listed in the same family, yet apart. In other words, dobutamine is not milrinone and primacor is not either. That's how I understood it. If I'm wrong, that's why I'm here. I am given milrinone now as opposed to dobutamine and really that's all I know. I really want to help but I come here for that help because my best thinking usually gets me in trouble. <g> Everyone, please take care and God bless, Barb. Alikeys@hotmail.com


Duane C, November 4, 2000 - Hi, I haven't written for awhile. Last fall I got into a funk and didn't feel like doing anything. I decided I would find some volunteer work I could do. I joined casa - court appointed special advocate. This takes about 20 hours a month and is very rewarding. At night I think of these children instead of my problems. My wife and I are also mentors in a youth shelter and I am a big brother. It has really given me a purpose to get going. Also, I can work around my bad days most of the time. Thanks again Jon, for the site. Duane. djclink@kdi.net


Jeff, November 4, 2000 - Hi everyone, I have a friend whose mom has an occipital meningioma tumor in her brain and her neuorologist said it has to be removed. She is not taking it well and she asked me if I know any web sites like this one that she can go to and find information on it, and talk to people with the same type trouble. If you know any information that I can send her please send it to me and I will pass it on, or you can e-mail her directly at marndeth@lisco.com. Her name is Marnie and it is her mom who has the tumor. You can e-mail me at iowajeff29@aol.com


Kim T, November 4, 2000 - Hi, My father in law recently was diagnosed with CHF. I am working on putting together a recipe book for him and my mother in law, with heart healthy recipes for main dishes, side dishes, desserts, and maybe flavorings to replace salt for him. Right now, if my mother in law even cooks plain chicken, the smell makes him sick. I have been doing a lot of cooking for them and sending it over. Please e-mail me with any good recipes you have and the sodium counts for them. IF you have them, the fat and calorie counts would be apreciated, too. Thanks to you all for any help you can give. I was thinking of making a book for them as a Christmas gift, Kim Trivette. Datkbt@prodigy.net


Robin Lynn's November 6 reply to Tony's November 4, 2000 - Hey there Tony, Thanks for giving me another thought about the irregularities. I have never paid much attention to the pollens in the air or most household chemicals that could be starting them up. I haven't figured out why they hit so hard sometimes and then not so much at others. I have had many suspicions but they haven't panned out yet. Thanks for the well wishes for Monday. I am excited. I can't wait to start my new life without all these thumps and bumps.
     I have a problem I want to address. I know it is really nothing compared to others but this is really bugging me. When I talk to or confide in close family members about my illness, no matter what it is I am saying, they think I am worried or scared or being negative. This is driving me nuts because it has gotten to the point that I am going to just bottle up and not talk at all about this. It's not like it's all I talk about. I only have been talking about my EP study and in a very positive note; but if I mention any of the down sides, I am being negative. I want you to all know that I am by nature a very positive person and consider myself to be living with IDCM, not dying from it. I started working at the preschool, which helped me out of my depression 1½ years ago and my outlook is great.
     They tend to think that being informed and doing research could make me worse, when in fact it has helped me greatly. I am the type who is scared of the unknown. Becoming informed gives me a sense of having control over my destiny. I actually asked my mother in law to leave my house today (very nicely - I bit my tongue). She came for dinner and I was cooking and while I was scanning the channels I ran into a Discovery channel show about doing surgery on an infant with a cleft lip. I have special interest in it because one of my preschool parents has a baby going through it. My mother in law had a fit at me. She said I shouldn't be watching medical stuff and that I am obsessed with it. She couldn't be more wrong! I did apologize to her for asking her to leave. I don't usually react that way but I am weaning off my meds for this EP study and am a bit quick to fire off.
     Anyway, have any of you experienced this type of thing with your loved ones or friends? Just being here at Jon's is supposedly being "too involved" and they think I should just go with the flow and not ask questions; the less I know, the better. Not me, not ever! I can tell of 10 good things in a day but I mention one not so good thing and I'm negative. This is bothering me. I don't want to have to clam up but it may come to that. If it does, I guess you all will be hearing a lot more from me. <g> God bless you all. Take good care of yourselves and I will let you know how the study goes, Robin Lynn. heartful99@hotmail.com


Beverly C's November 6 reply to Sue's November 2, 2000 - Hi, Boy, I cannot believe your story. I post here regularly so some of you know that I have been in and out of the hospital regularly since January 12, 2000. I woke up in terrible pain, went to the ER with no history of heart problems. I told them I thought I was having a heart attack or a gallbladder attack. Of course, they hooked me up to an EKG and immediately found a left bundle branch blockage. Through all of my chronic and several acute attacks of pain since then, no one had ever addressed the gallbladder possibility until last week. I went in during the night with terrible chest pain again. I had my third cath just the week before and they found my stent re-closed 80-90% and corrected it with angioplasty. It took 2 hours and 5 shots of painkiller to get the pain stopped. They admitted me into ICU and could find no reason for the unstable angina. After 2 days in ICU, they moved me to a room. They had noticed that I was anemic and wanted to test for that. First they did an endoscopy and it was negative. Then they did ultrasound and bingo, found an infected gallbladder full of stones, one as big as the surgeons thumbnail.
     After reviewing my chart the surgeon refused to do the surgery until I passed a stress test. All went well and they were able to do the surgery with the laparoscope. Due to extensive scar tissue, the 15 minute to 1 hour surgery took 2 hours on the table. If anyone needs a fantastic surgeon in Dallas, I found one! The short of it is that I do have all my heart problems but the pain I have been experiencing wa s from my gallbladder! I had both these bad problems and did not know any of it until I had my first attack. When they say doctors are "practicing medicine" you had better believe it. ;-) I had also been diagnosed with asthma for a month before my heart attack. It is amazing that we know of so many people who were misdiagnosed with asthma and never get an EKG. Why don't they check it out when we have SOB? I was in the hospital 6 days this time and have to recover from the surgery. Best of luck to all of you, Beverly. macmember@earthlink.net


Wayne S, November 6, 2000 - Hello Everyone, I want to thank everyone for the information on ICDs. My doc cut my diruetic in half and also my potassium. Since I have been diagnosed with CM and CHF, I don't seem to have much problem with edema. I have no swelling in my feet or arms.
     Has anyone not had problems, but later developed such problems? Also, my arteries are clear. I want to thank the people who personally e-mailed me Your e-mails were very much appreciated. God bless all of you. frances@blkbox.com


Joe S' November 6 reply to Tony's November 4, 2000 - Hi Tony, I lived on the coast of California for several years and had similar symptoms as you. Then I moved to the eastern Sierras of California where the humidity is low, bugs are few and there are few airborn allergens. My health improved many-fold within a year of the move till now I am almost well. I sacrificed a lot of conveniences like stores and banks, but it was very worth it. Joe S. jes@stevensonlighting.com


Anna N's November 6 reply to Barb L S' November 4, 2000 - Hi Barb, Thank you for replying to me even though you haven't felt well yourself. Thanks also to the people who have been e-mailing me. I've been reading this site for a long time and am glad I finally posted something. It helps to be in contact with others who have the same illness and problems. snowyegret7@excite.com


Carol W's November 6 reply to Laurie A's November 3, 2000 - Hello Laurie, I know what you mean about fatigue. I have had a bad month too, with excessive fatigue and sleep. I can feel like I run a marathon just walking from one end of my house to the other. I feel better for a couple of days and then bad again. I have had x-rays, blood tests and cultures but nothing shows up; no weakened heart, no fluid, no cause. More blood tests are being done. This has happened numerous times with no reasons ever found. Frustrating isn't it? Luckily I have a great boss who says "call me when you are better" and a family willing to help. Does this happen to anyone else? cabwojo@banet.net


John Len's November 6 reply to Ruthie A's November 2, 2000 - Hi Ruthie, I was on medication for about 4 months after being diagnosed with diabetes, before I went on insulin. It did nothing to control my diabetes. The insulin has more or less controlled my diabetes since. The first thing is to get a meter to test your blood sugars. They are avalable at most drug stores and with rebates, they are usually free. I think Medicare has also started furnishing meters and test strips free to all diabetics. Incidentally, Lilly furnishes my insulin - both humalog and humalin N - free, but it has to go through your doctor. Only one foot and one ankle refuses to cooperate and swells up all the time. :-( John. a_lenny6@hotmail.com


Shirley G, November 6, 2000 - Hi everyone, I would like to get a few opinions on the flu vaccine situation, since we are among the many who need the vaccine, rather than just "want" it. I live in Connecticut and the situation here is frustrating. None of my doctors (oncologist, cardiologist, or primary care physician) have any vaccine. They have told me to go to one of the walk-in flu clinics being held around the state at various grocery stores, pharmacies, and senior centers. The ALA and VNA seem to have the only vaccine supply here that is available to the public and they are running these clinics on a first-come, first-serve basis. There is no prioritizing, and young, healthy people are lining up along with those who are at high risk. The waiting lines are horrendous and you need to have the time and stamina for a multi-hour wait. I tried one of these clinics and after 4 hours was informed that the supply had run out. Large companies in the area are vaccinating their employees, so obviously they have an ample supply. Some doctors have vaccine but won't give it to anyone who is not their patient. The CDC issued a press release several weeks ago stating that due to the delay in vaccine shipments they recommended that high-risk patients receive the vaccine first. Obviously that recommendation is not being implemented here. Is anyone else experiencing this problem in getting their needed flu vaccination? Suggestions? srgrandl@snet.net


Jeanette's November 6 reply to Kim's November 4, 2000 - Hi Kim, Did you check out our recipe spot here? There are lots of recipes that have the sodium count and will help your dad. Check them out, some are very good! tried many myself. If I find anyone who has some more, I will let you know. Jeanette. jeanette841@yahoo.com


George H, November 6, 2000 - Hello, I've had a heart murmur and my heart skips beats on a daily basis for approximately 7 years. Most of the time I have to pay attention to notice it but sometimes it feels like a punch to the chest without the actual surface pain, if that makes sense. I went to my family doctor 2 years ago and he told me that it was nothing to worry about. Recently I've been feeling more tired and I don't know how to explain it, but I guess I just feel like something is wrong.
     I'm a 29 year old male with no real heart problems in my family history so I keep telling myself it's nothing and that I am just out of shape. However, I've felt tightness in my chest without real "pain" but it's an uncomfortable feeling with lightheadedness. Less than a full flight of stairs causes heavy breathing for about a minute. When I was 21 I used steroids for football reasons and that's my only real regret in life. My doctor says a one-time use would not be sufficient to cause any real damage (2 month cycle - testosterone, Enanthanate I believe). When it comes to health problems I'm the type of person who believes in mind over matter so I usually just fight through things and keep working but it seems like this will not go away. I'm getting worried about my health and future with my family. Am I paranoid or could these be signs of CHF or something else serious my doctor is missing? ghughes_2000@yahoo.com


Tony's November 6 reply to Robin Lynn's November 6, 2000 - Hi Robin, I can relate to your problems with talking openly with others about your CHF. I get the same thing. I am told often that I am making myself worse because of my thinking about my illness. As a result of this, I don't like to talk to others about it either. I feel bad that you don't have a more compassionate, understanding mother-in-law. Perhaps you can list her on Ebay and auction her off! <g>
     In my case, I am not the one that brings the CHF, a-fib, arrhythmias and hypertension to mind. I would be very happy never to think about my illness. It is the illnesses that brings themselves to my mind. If I would go a day without feeling weak, sick to my stomach, sweaty, dizzy, fatigued, or feel chest pains, I would never think about it or bring up the subject. Having heart disease is a full time job. It never lets me forget about it. It is always there. In order to survive heart disease you have to drastically modify your diet and activities, and take the correct meds. If I make a mistake by trying to lift something too heavy or eat the wrong food or come in contact with something that sets off an arrhythmia, I pay dearly for it. You can't beat this disease with blinders on! What do people think we have, a common cold?
     I hope that you have at least one person who is understanding. Suffering from heart disease is bad enough. Having to deal with lack of understanding and compassion makes it harder to cope with heart disease, and we don't need that type of help! Take care, Tony. t0nyt@yahoo.com


Tonya's November 6 reply to Shirley G's November 6, 2000 - Hi Shirley, I got a shot about 2 weeks ago from the visiting nurses association. At the very moment I reached the end of the line, a nurse came out and let anyone paying with cash rather than Medicare go right in. My wait was only 15 minutes. One man in line told me he had been there for over 2 hours. Since the cost was only $12, many of the Medicare patients decided to pay the cash and get in sooner. One thing I would like you to remember is that you can't assume that all the young people in line for the flu shot are healthy. I am only 28 and look as healthy as the next guy, yet I have PPCM and CHF. I hope you find a shot soon, Tonya. rntdean@jcn.net


Tony's November 6 reply to Joe S' November 6, 2000 - Hi Joe, Someday I would love to follow your example and move away from all of the highway exhausts, pollens and pollution in south Florida. Today was a bad day. It's tree blooming time and the Maleleuka trees, among others, are going nuts. I was weak and sick as a puppy for several hours, with my heart jumping all over the place. It has finally settled down. Man, I hate that!
     On another matter, in the last few days newspeople have been talking about the link between pesticides and Parkinson's disease, and a chemical in cold meds that can cause strokes. The drug companies spend zillions to test new drugs but no one fully tests the many chemicals and pesticides and dyes that we encounter in everyday life, to see what adverse effects they have on humans and wildlife. My heart's electrical system is messed up and I have permanent a-fib. My a-fib was caused by a physical defect but when I get another arrhythmia, it is caused by an external influence, I think. I feel very sure that many people who suffer from persistant arrhythmias that cannot be blamed on physical defects are affected by chemicals, dyes, food addititives and airborne matter.
     I have reduced the number of times I experience significant arrythmias but some things cannot be avoided. During an allergic reaction, the glands within the body go into overdrive and produce chemicals that affect the heart's electrical system. The solution is moving to a climate where there are fewer airborne irritants, such as the move you made. Glad to hear that you are doing so much better. t0nyt@yahoo.com


Jeanette's November 6 reply to Shirley G's November 6, 2000 - Hi Shirley, I live in New York and we have the same situation here. We were supposed to have our flu shots here at my apartment building, which is for seniors and disabled but they didn't have the serum either, nor did the doctors' offices. The stores are getting it but the ones who should be getting it aren't and it is so frustrating. My dad is not well and he needs it too and he can't even get it at his doctor's because he doesn't have any but the stores do. You have to wait in line for hours only to be turned away. Believe me, I know what you are going through. The government should enforce the policy that all people with health risks should be the first to get them and make the others wait or set a place up just for us at a local clinic or hospital where we can go and get it. Good luck and take care, Jeanette. jeanette841@yahoo.com


Jim, November 6, 2000 - Hi, Two weeks ago I went to my heart doctors with problems of SOB, the usual stuff. He listened to my heart for awhile, then said I had a leaky valve. He scheduled a TEE at the hospital 2 days later. I found out I have an extremely leaky atrial valve. Today I visited a cardiac surgeon. I am scheduled for surgery next Wednesday (11/15) for open heart surgery to replace the valve. I am quite apprehensive about this and would appreciate all your prayers.
     PS. Last night I had the privilege of attending a Billy Graham crusade here in Jacksonville, Florida. He is such an awesome man of God. jimhall@alltel.net


Kim T's November 6 reply to Jeanette's November 6, 2000 - Hi Jeanette, Yes, I have looked at the recipe spot and have already given some of the sauce and flavoring recipes to them. I was hoping to get together a recipe book for them in time for Christmas! I am going to put some of the ones from here, and have found a few others. Maybe someone here has some that they haven't posted yet. Thanks for your help! Kim. datkbt@prodigy.net
 
Jon's note: Don't forget the Links page


Joe S' November 8 reply to Tony's November 6, 2000 - Hi Tony, I can see you recognize the problem with all the pollutants and additives. I can't believe what they have added to most foods. I can't eat in any restaurant unless I eat strictly scrambled eggs and they sure aren't good for us. Another reason why I moved where I moved to is the cost of living is one half of what it was on California's coast. My rent was cut in half, I have no water, sewer or trash bills, and my electrical rate is the lowest in the west. Of course all conveniences like banks and supermarkets are over 35 miles away and gasoline here is sky high but once I drive the 35 miles to Gardnerville, Nevada, everything is 20 to 25% less then in California. It took a lot of research but to live in an area where the sky is always crystal clear, the humidity hovers at a high of 15-20%, airborne allergens are virtually nonexistent, the crime rate is zero and bugs like fleas, ticks and cockroaches don't live here, it is very much worth any sacrifice. I have written this before but since moving here, my health is back to where it was 20 years ago. I still have a serious murmer but it doesn't bother me any where near as badly as it has. Good luck, Joe S. jes@stevensonlighting.com
 
Jon's note: Why aren't eggs good for you? Allergies?


Jon, November 8, 2000 - Hi, If your post does not show up, it may be because I checked the e-mail address and it bounced. I don't post your message in that case. Just re-send me a correct e-mail address and I'll put it up next. If you sent your post in ALL CAPS, I WILL NOT POST IT. Just re-type it not in all caps and I'll put your message up. :-) Jon.


Donna Z, November 8, 2000 - Hi, I got my flu shot through my county health department. If you have not gotten one yet, call your local department of health and see if they are giving them. They will ask you if you are over 65 or what your problem is, but better safe than sorry. The cost was $10. Donna. dzak@worldnet.att.net


Peggy's November 8 reply to George's November 6, 2000 - Hi George, Get to a doctor right away! My husband had the same symptoms you had and thought he was out of shape too. On November first he was diagnosed with dilated cardiomyopathy, which causes congestive heart failure! This is nothing to fool around with. He thought he was having a heart attack when he was admitted in the Emergency Room. If left untreated, this can be fatal. Good luck and keep in touch. RyoungAngora4683@aol.com


Phyllis A, November 8, 2000 - Hello Jon and Friends, I had my flu shot on October 6. I got it at my city health department and it was free. I've gotten them there several times. Try at your city free health center. God bless. phylcasurv@msn.com


Luc D, November 9, 2000 - Dear friends, It's Luc here from Belgium. I just want to say hello to all the new people here on this wonderful heart forum. I also want to know if there are people who have got a heart transplant and how do they feel with this new heart? Like most of you know, I have cardiomyopathy and it's not getting any better. Just give me a sign, ok? I wish you and your families all the best life can give us. Greetings from the Belgian Luc. luc.deseins@planetinternet.be


Mary Lou L's November 9 reply to Shirley G's November 6, 2000 - Hi, I got my flu shot at my pulmonologist's office 3 weeks ago. When I went to my CHF doc at Columbia Presbyterian Hospital in New York, there was a sign posted informing patients that they had flu shot vaccine. My husband got his flu shot at a local IMCC (Intermediate Medical Care Center) as our primary doctor had no vaccine. He got 70 units out of an order for 6,000. Mary Lou. MLBinks@aol.com


Conrad, November 9, 2000 - Hi, I was told by 3 different doctors that if I didn't have a heart transplant, I would die within the next few years. I am only 37 and that was some disheartening news. Are there ways you can live a regular life without having to go through the pain of a transplant? Sometimes I think the doctors just want to experiment on me. Am I being paranoid or do you think this is something worth exploring more? rad63con@yahoo.com
 
Jon's note: Can you tell us what your health problems are and what treatment you are now getting?


Anita's November 10 reply to Luc D's November 9, 2000 - Dear Luc and Conrad, I just read both your posts today regarding heart transplant. I am a recent heart transplant recipient (April 6) and I am doing really well. I will tell you that I was a reluctant recipient in the beginning. I had viral cardiomyopathy and CHF beginning in 1991. I lived with this disease for 8 years managed with meds, diet, exercise, and a positive attitude but in the fall of 1999 my condition worsened to the point that I was sent by my cardiologist to a major medical center for a transplant evaluation. My EF was 15% and my <Vo2 stress test was 11%. They recommended I go on the heart transplant waiting list. My heart had just "given out." I agonized over this decision. However, upon meeting and talking to several transplant recipients in a support group setting, I made the decision to move forward and had myself put on the waiting list.
     I don't regret that decision. I am 55 years old and I now look forward to a much longer life. To answer Conrad, heart transplant surgery is not too painful an experience. I was amazed at how quickly I recovered. The large amount of meds that you have to take is overwhelming, but it is a part of my life now. I have had no rejections thus far. I can breathe for the first time in many years. I can carry my new grandson in my arms without giving out. I don't depend on a defibrillator to keep my heart beating. I acknowledge that this is a very scary decision, and it is a very personal one, no matter how many family and friends you have urging you on, it is ultimately up to you and only you. Best wishes to you both, Anita Cox. abcox@triad.rr.com


Dana J, November 10, 2000 - Hi, I wanted to let everyone know that I went to a new cardiologist Tuesday (I think I've finally found a good one!) and he's given me two options for my arrhythmia. I can either stay on the meds for as long as they will work well for me, or have a pacemaker installed. He's leaning toward that option. Since I'm only 29 years old, I would prefer the meds for as long as possible. I understand that eventually I will need to have the device but since I have a tendency to build scar tissue and I'm already full of adhesions from my C-sections and hysterectomy, I have serious questions about what a second ablation will do to me. I'm scared out of my mind that now I may have scar tissue from the first ablation. I would appreciate hearing from anyone who has had this problem and can give me an account from first-hand experience. All I have been able to get from the doc is that eventually I will more than likely run into some problems.
     I have also been referred to a kidney specialist (seems my kidneys are trying to go on the blink) and a pulmonary specialist. A recent test showed that I have moderately severe lung disease. I do have good news - my meds seems to be doing the trick now. My EF is up to 40% and my fatigue seems to be a little bit better. I am able to stay up and about longer than before, but it seems like I crash a lot harder and my shortness of breath is getting harder to control. Thanks to everyone who has e-mailed me and offered support and answers to all my questions. I don't know how I would have made it this far without you guys! Dana. danajj@excite.com


Robin Lynn, November 10, 2000 - Well I did it. I had my ablation on Monday and so far I haven't felt one thump or bump, and life is better for it. I had over 20000 a day on a good day. Come to find out, many of them were ventricular tachycardia. The not so good part is that my EP doctor wants me to stay off beta-blockers for the next 2 weeks to see how my heart is without them for a longer period of time. That means I am once again in constant tachycardia. My IDCM has improved if you look at my EF, which has come up to about 50%, but my left ventricle has enlarged by 10mm in 6 months. The strange thing is that my right ventricle is getting smaller.
     I must say that I feel better without the beta-blockers; I have more energy. Or could it be that my heart rate of 120 at rest and who knows how high during activity is just making me feel like moving? One more thing. Does anyone know what fractional shortening percentage is and what, if any, difference it makes? I just noticed it on one of my echo reports. Thanks for being here. God bless, Robin Lynn. heartful99@hotmail.com


Jon's November 10 reply to Robin Lynn's November 10, 2000 - Hi Robin, Fractional Shortening (FS) is rarely used any longer, having been mostly replaced by the measurement we call Ejection Fraction. Here's what I have on file about FS:

Shortening fraction is one measure of left ventricular function, although it can be misleading. For example, less left ventricular afterload (as in mitral valve insufficiency) raises ventricular systolic shortening so that fractional shortening is greater, even though there is no change in the strength of the heart's pumping. This explains the exaggerated fractional shortening in patients with severe mitral regurgitation and normal ventricular function.
     To figure FS: percent of fractional shortening = 'difference between end-diastolic and end-systolic dimensions' divided by 'end-diastolic dimension' Average = 36%; Range = 34%-44

Autumn, November 10, 2000 - Hi, I was first put on disability because I have post traumatic stress disorder with sleep problems and depression. Besides CHF, I have a low heart rate: low 50s when awake and low 40s when asleep, and my breathing tends to stop if I am over tired and drowsy. My GP told me that my breathing problem originates in my central nervous system. I have become allergic to most of the meds used to treat blood pressure and CHF. I can't take others because they lower my heart rate more. Today my doctor told me I am "at the end of the road as far as treatment is concerned" even though I am still in the early stages of CHF. In order to get my heart rate up they want me to quit my BP med, Calan. Calcium channel blockers are the only BP drug I'm not allergic to but they aren't good for someone with CHF and they lower the heart rate. My doctor is hoping that the increased damage to my heart from the increased BP (I run about 148/93) will be slow enough that maybe in a couple of years a new drug may come out that I could take; or when I get to the late stages of CHF they'd put me in the hospital and retest my reaction to drugs I've previously demonstrated allergy to (in the hopes I may be able to take them).
     If I continue on Calan I risk fading out in my sleep at any time. When I was 25, long before any known heart problem, my heart stopped before surgery. When I was 38, my heart stopped during surgery One and ahalf years ago, I had a near death out of body experience when my heart and lungs quit during the night, then restarted. I've had a number of very tiny strokes and being off BP meds would increase that problem. Regrettably, these are my problems. It bothers me greatly that I can't use the drugs that can save or extend my life, and that I have to choose between fading out early or having my CHF accelerated from hypertension but I accept that these are things I can't change and must come to terms with. However, I do not just accept my fate blindly. I need to learn as much as I can about low heart rate and if it is tied directly to the breathing problem and central nervous system, and if a pacemaker would be appropriate for me.
     My main cardiologist told me that the reason my first 2 cardiologists didn't treat my CHF is because they don't feel I'm worth treating because of my mental health diagnosis but now he doesn't seem too inclined toward treating me either since my case has become so complex, so apparently hopeless. My first 2 cardiologists in fact didn't even tell me I had CHF. I found out because my GP told me only that I had Pulmonary Hypertension and I went to the cardiologist and got my records myself to read. For the past 6 weeks I've also reduced my anti-depressants to almost nothing because of their affect on the central nervous system. I am using positive thinking and other constructive thinking, and am doing quite well, if I do say so myself. Does anyone else have low heart rate, central breathing problems, or inability to take meds for your CHF. Does anyone know where to find information on these things? Thanks so much for any input. I appreciate all of you. AmberDawn-Blzn@webtv.net


Luc D's November 11 reply to Anita's November 10, 2000 - Dear friends, Anita, Laura, Blake I just want to thank you all for the advice on a heart transplant. I still get very bad days. My cardiologists don't know if I can get a transplant yet because they don't have enough hearts for transplant. You have to be dying before you can get one over here! They will do some tests again in December. Let's hope they can help me out. Thanks very much from Luc from Belgium. luc.deseins@planetinternet.be


Wayne S' November 11 reply to Anita's November 10, 2000 - Hi everyone, Boy am I tired! I was going to the grocery store and my truck broke down. My wife had given me a cell phone just last week. I did not have to walk - handy device.
     Anita, it is so nice to hear from someone who had a heart transplant and is so upbeat about it. I have a young grandson and I sure would like to be around to see him grow up. Congratulations on your new heart. You have given me hope. God bless everyone, Wayne S, EF 20%, CM, CHF. frances@blkbox.com


Linda, November 11, 2000 - This is from Jon's wife Linda, who is in charge of all patient accounts at a large metropolitan hospital
     Effective 8/1/00, Medicare has new guidelines for paying outpatient hospital services. One benefit to patients is that the "coinsurance" or amount due from the patient is now based on the fee paid to the hospital instead of based on total charges. For most services, this means that "copay" amount is less now. (However, in some cases, that "copay" may be more than it was in the past).
     Medicare patients should beware of the list of procedures that Medicare now considers to be Inpatient Only Procedures. If you have one of these procedures in a hospital, your doctor must order you to be admitted as an inpatient for Medicare to pay the service. If the doctor orders the visit as an outpatient visit, Medicare will not pay! At this time, Medicare requires hospitals to bill the patient for those services.
     The hospitals are not required to notify the patient prior to the service/procedure that the procedure must be done as an inpatient to be covered. As much as my hospital for example, would like to do so, the list of procedures is so long and cumbersome that we have not figured out a way to know if the patient is having one of these procedures. Admitting clerks, generally, are not medically educated or skilled enough to deal with this problem.
     At my hospital (and most hospitals nationwide, we are told), the most common "Inpatient Only Procedure" to be provided as an outpatient in error is "Overnight Oximetry." This procedure is often done during sleep studies. Late yesterday, one of my managers told me we've had an Inpatient Only Procedure denial on a $37,000 outpatient visit. We haven't had time to investigate that case but I pray it won't be something for which we have to bill the patient!
     Getting down to the bottom line, my advice is: If you are going to have an outpatient hospital service, ask your physician to make sure that nothing he orders for that visit will be considered an "Inpatient Only Procedure." If he doesn't know what you're referring to, ask him to call the Medical Education department or the Medical Staff office at the hospital where he practices for more information. Tell him you will have to pay for the procedure if he makes a mistake in admitting you as an outpatient!
     Another thing to remember is that if a physician orders your visit to be an "observation" visit, that is considered to be an outpatient visit by Medicare. So even though you may stay overnight in a hospital bed, if you have one of these procedures it will not be covered because you are considered to be an outpatient. At our hospital, we are trying very hard to find out if we are required absolutely by law to hold the patient responsible for these denials. Not all hospitals will be as diligent in doing so, and they have every right to bill you even though Medicare has not notified you in writing about this payment change.
     I would encourage you to write your US Senators and Representatives about this unfair development in Medicare regulations. It's unfair to you and it's unfair to the hospitals, too. Please feel free to e-mail me with questions. Linda linda@jonsplace.org
 
Jon's note: My 2000 Medicare Rules Manual did NOT include this information! Linda knows her stuff; this is fact but many doctors will not be aware of this. Watch out!


Jon, November 11, 2000 - Hi everybody, Huge thanks to everyone who is helping me with site maintenance. Over a hundred dead links and e-mail links have now been fixed and more are on the to-do list. <g> I just can't keep up with it myself due to the sheer size of the site. I am still looking for the last bit of info for the FAQ page on heart size - I haven't forgotten about it.
     Anyway, some of the bios now have bouncing e-mail addresses, so if your name is on this list, please send me your new e-mail address. If you did send it and I forgot to change it, please try me again. ;-)

  1. Jennifer Robinson - jrobi87102@aol.com
  2. Barbara - banel@worldnet.att.net
  3. Maureen Mock - maureenmock@home.com
  4. Lori Pearson - jeremypearson@earthlink.net
  5. Ann Chambers - dacadc@gateway.net

Sigmund B's November 13 reply to Autumn's November 10, 2000 - Hello Autumn, I just read your e-mail to Jon (on support mailing list). I am 79 years of age with a pacemaker and ICD implant, and a pretty bad CHF condition. I recently had a hernia procedure without my cardiologist or wife's approval. The hernia was very intrusive, to a point I felt it had to be done. I was administered a local anesthetic and turned out to be a "piece of cake" with no problems at all. I was encouraged to have the procedure done by another of Jon's readers who recently had some surgery done.
     I don't know if you take Coumadin but I do, so they had to get me off this drug and put me on heparin, a liquid blood thinner. When my doc was satisfied with my blood levels of the drug, Coumadin was restored and I went home. A hernia operation is no big deal but I had to spend a total of 7 days in the hospital, while it is usually an overnight stay for a healthy person. Anyhow, don't be too aprehensive about the surgery. As long as you receive a local rather than a general anesthetic, you shoudn't have any problems. I hope this note cheers you up. All the best, Sig. sbegun@hoflink.com


Jackie's November 13 reply to George's November 6, 2000 - Hi George, I read your post on the CHF site. I couldn't help but think about my situation 5 years ago. I would strongly suggest you see a cardiologist. I felt I was out of shape also and found I had a severe stenosis of my aortic valve. It was replaced within 45 days of its discovery. Had it not been found, I wouldn't be here today. See a good cardiologist. gjconnection@earthlink.net


Charles K, November 13, 2000 - Hi, I was diagnosed with CM, CHF and sleep apnea in the spring of 1999. I was like a lot of people and thought I had the flu and was out of shape. Little did I know! When I could no longer cross the street because of shortness of breath, I finally went to see a doctor. My EF was 10%. After 2 weeks of intense meds and reworking of my life, I left the hospital and started my life over.
     The day I was released a friend and I went to a grocery store and started reading labels. It's taken a lot of time but I have found out there are almost one of everything that is low in sodium, low fat (look in the natural foods). It's more expensive and harder to find but well worth it. Read labels: it's the only way to go. Beware of store meats; they are often coated with a sodium solution (I know not why). Read the small print. A real butcher is the way to go.
     If you're young like me (age 32) and single, you may not want to cook or you may be too tired. The only TV dinner I found that works are a few of the ones in the Healthy Choice line, which have 400-600mg sodium, but you still gotta read the label. The last thing about food is that I found low sodium bread expensive and hard to find, so I bought a bread maker. I add no salt at all and the recipes work just fine.
     Educate yourself about your meds and condition, be aware that depression goes along with CM/CHF. Be aggresive and progressive with your treatment and good luck. ;-) the_bohemian@hotmail.com


Jackie B, November 13, 2000 - Hi, I have diastolic heart failure. There is very little information about it since only 30% at most of CHF patients have this type of heart failure. I'd sure like to know where to go to find info. Also, should I see a heart failure specialist? Would that be a pulmonologist or a cardiologist? Thanks for the help, Jackie. gjconnection@earthlink.net


Jon, November 13, 2000 - Hi everyone, I am running into a brick wall on finding CHF docs for my directory of same. I have sent scads (and I means scads!) of e-mails to doctors listing themselves on other sites but 99% of those e-mails bounce due to outdated addresses. If I cannot get an e-mail response and I cannot find a web site for a doctor or practice, I don't put them on the list, since I cannot verify anything they claim on other pages which list their practice. I cannot afford to make alot of long-distance phone calls. While some doctors do come here and list themselves via the form I provide, that number is small.
     If anyone has information about a CHF specialist not already listed here, please either send me their e-mail address or Url or give my e-mail address (jon@jonsplace.org) to the doctor. Thanks, Jon.


Linda, November 15, 2000 - Hi everyone, Good news regarding Medicare's "Inpatient Only Procedures!" Effective 11/13/00, overnight oximetry has been reclassified and is no longer considered an inpatient only procedure. We're still trying to find out if that might be retroactive back to 8/1/2000. Also, our Medicare intermediary, Mutual of Omaha is verbally telling our hospital that we do not have to bill the patient for these denials. We're still wanting something in writing, though! Our choice will probably be to write-off the bill instead of billing the patient. Remember though, the hospitals have every right to bill the patient for these denials. Many hospitals' bottom lines are in the red; they simply may not be able to afford taking the hit on these denials. Linda. linda@jonsplace.org


Marty's November 15 reply to Sigmund B's November 13, 2000 - Greetings! I love reading all the posts here at Jon's. I rarely have much to add to all the great information but I have had hernia surgery while suffering from A-fib and CHF caused by DCM. Last year I had laporoscopic hernia repair. At first I was to be knocked out but after checking my cardiac profile that was a no go. They appraised me of this fact on the gurney going into the OR. I was given an epidural and was awake through the process. I am also on warfarin and I was weaned 4 days prior to the operation.
     I had no problems at all: No excess bleeding and my only complaint was some real pain for about 4 days. My heart was a trooper throughout, though the nurses kept worrying when my low BP set off the alarms over and over. I just told them that was my normal pressure due to Coreg. I didn't even stay the night but did it all outpatient, in at 6 and out by 3. I rested a lot the next 2 days and was up and around with pain for 2 more. By the fifth day I was pretty much back to my old self, Marty. MartinBK@aol.com


Jon, November 15, 2000 - Hi everyone, regarding a list of those procedures Linda told us about: The 2001 list contains 1,625 of them! <g> You can go to the Federal Register at http://www.access.gpo.gov/su_docs/aces/aces140.html and search for the 2000 list in the 4/7/00 Federal Register or search for the 2001 list in the 11/13/00 issue of the Federal Register. My wife is bringing home a spreadsheet of everything involved but since some of it is not public, it may take awhile to sort through that. If you're a real go-getter, you can dig through HCFA's PDF documents to get the codes. ;-) I'll keep you updated as much as possible on our progress with the full spreadsheet of info. You can start to see why doctors' offices and hospitals make mistakes with Medicare coverage issues. This is just a tiny porion of Medicare regulations currently in effect and changing every day. Jon.


Heidi, November 15, 2000 - Hi, When I first found Jon's web site it was because I was diagnosed with Idiopathic Dilated Cardiomyopathy and was surfing the Internet to learn more about this disease. I remember feeling emotionally drained and scared that I was going to have a heart transplant just like my father (who is stable and continuing to enjoy life with his 12 year old new heart).
     I'm writing again so I can share with everyone that I recently had a heart ultrasound and the results were positive. My current ejection fraction is 45% (I was at 20%) and my enlarged heart has returned to normal size. I have a slight leak in one valve but when I think about the stress this organ has tolerated, I have accepted this problem. I have maintained my weight for 8 months and try to follow a low sodium diet. The most rewarding change is being allowed to return to work. I was hired in July as a case manager for one of the state area agencies. I have difficult days where my breathing is poor, but they're usually related to the days I don't watch my sodium intake or when my sleeping pattern is off. I've accpeted my new life style and have accepted that my condition can change at any given time. Over the months I have started to feel a comfort level when discussing CHF and my own condition. I'll close for now, but want to share that I truly believe we can influence our own hearts, but our hearts really do control us in more ways than one! Love, Heidi J. hbezanson@mediaone.net


John Len, November 15, 2000 - Hi Jon, After reading Linda's post on the new Medicare rules on in inpatient procedures, it seems that Medicare is determined to make a lot of our lives as miserable as they can. It only took them 10 months to finally agree to pay for my bipap machine for sleep apnea even though we could show a necessity for it. This left me caught between my DME provider and Medicare to the tune of about $3000. Now it seems, here they go again. a_lenny6@hotmail.com


Jon's November 15 reply to John Len's November 15, 2000 - Hi John, Yet many people want this exact type bureaucracy in charge of all health care in the form of governmentally run universal health care - what a nightmare that would be!
     Anyway, I don't know how many people noticed in Linda's post but she unintentionally hints at something many people never realize: that hospitals are required by law to charge patients for many services rendered to Medicare patients, whether Medicare will cover those services or not! The hospitals would rather write off many of these charges for public relations purposes - it makes them look like the bad guy. However, they often have no choice but to bill the patient anyway or face criminal charges.
     In fact, our family pays for a lot of extra homeowner's insurance ($1,000,000+ worth) because we fear the feds will prosecute Linda someday for an innocent mistake. They have the legal right to do so and they have shown that they will in fact do so; Such witch hunts are taking place in some parts of the country today. In the name of "Medicare fraud reform" they are charging with crimes anyone who makes a mistake, period; even though the regulations are so complex that no one (not even the Medicare people in charge!) can really tell what is and what is not required. I've personally seen these regulations in book form, guys, and they are enormous! Often patients call my wife and scream bloody murder at her for things the government does not allow her to control in her own hospital department!
     So be careful about wishing for "Medicare reform or fraud" legislation. The feds do not use these laws wisely nor in patients' best interest, but often just to expand their own power over both the health care industry and over individuals. Just be careful asking the federal government to control an industry - the results can be a terrible thing for a lot of innocent people. Justice (balance) is hard to come by once the feds join the party. My clock gets wound about this because it affects my family in a very personal way that the media and the public choose to ignore entirely. Rant over. <g> Jon.


Ginger, November 15, 2000 - Hi all, I just want to say what a blessing this place is, and not just for heart help. The people here are the greatest people someone could ever hope to have for friends. I thank everyone for your e-mails. Some of you I have already answered and those I haven't know I will in the next few days. Jon, I thank you from the bottom of my heart for this place and especially for your prayer/support mailing list. This site has helped me get through more things then is possible to even begin to name. All newbies here, you have definitely found the place to come to for help, answers, support and understanding. The wealth of information on this site is just the beginning of what this site does for us. So I just had to thank Jon for keeping this place going even with his bad days. I love you all and keep you in my own prayers every day. Thank you. Hugs and prayers, Ginger. angelgin@bellsouth.net


Leland Y, November 15, 2000 - Hi, A cheerful heart is good medicine. (Proverbs 17:22) It's been 18 months since my "episode" and this echo is quite encouraging. My EF is now 30 to 35%, my left ventricle has shrunk from 5/6.5 to 4.3/5.7cm, my left ventricle wall thickness has gone down from 1.2 to 0.9cm and I can walk 1 - 2 miles a day. Only a slight blip: I have aortic leakage through my mitral valve but it's so slight the MD could barely hear it with his stethoscope. With good dieting and lots of rest, life is still great. Everyone please hold on to your faith, there is light at the end of the tunnel. Luv and salutations, Leland. LLYee@socal.rr.com


Jeanette, November 15, 2000 - Hello everyone, I just stopped by to let you all know how I am doing - not well. My cardiologist referred me to a pulmonary specialist to have my sleep test done but since he is only in 2 days a week, I am not able to see him for 2 months to get in for a consultation. I am a train wreck. I am so tired and have been taking many naps during the day. My emotional status is not good either. I cry at the drop of spilled milk and don't seem to be getting any better. My cardiologist knows about this but his hands are tied to try and get me in sooner with the sleep study. I am so sick of being tired all the time. I have no energy and when I do, it's not for very long and I am back in bed. Sorry to be dumping this all on everyone. I am at the end of my rope and just don't know what else to do. I have been hounding them to no avail. I have given this to God and am patiently waiting. There is nothing else for me to do. I hope the rest of you are doing ok and I am always praying for you all. Take care and God bless, Jeanette. jeanette841@yahoo.com


Jon's November 15 reply to Jeanette's November 15, 2000 - Hi Jeanette, You're not alone. I have severe insomnia and sometimes go 30+ hours without sleep. On top of a weak heart, this is devastating. However, remember that God placed us in a world where rain falls in the desert! Anything is possible with His hand in our lives. Also remember music. God loves music - He sings too (Zephaniah 3:17). Music can soothe a person extremely short of sleep when everything else just irritates. Find the music that works for you and bathe your heart in it when you despair. Get others who love Jesus to pray with you - this is important (Matthew 18:20).
     I have given up on medical remedies for my own situation and find that accepting this has helped me turn it over to Jesus in reality rather than just in words. I do not suggest you abandon medical help because in most cases, there really is a problem underlying this that can be fixed. My point is that it's common for us Christians to turn things over to Jesus in word but not in our hearts. There is no handbook for getting this right, not even the Bible. However, those group prayer sessions really help us focus on God despite our situation.
     Swapping our responsibilities for His hand is a huge reduction in that weight on our shoulders every day (Matthew 11:28). I can personally vouch for this. Do you really think I could keep up with this site on my own with my heart failure, insomnia, bad shoulders and foot/leg pain? Not a chance! Jesus is real and He walks right besides us. The trick is to fall back and let Him lead us all the way! So don't despair Jeanette, hope remains always with us. Drop me a line anytime. Jon.


Jon, November 15, 2000 - Hi everyone, Well I finally got my chat room page moved to the new server and have set up new chat times twice a week. I will be trying to attend each chat although I don't know how long I can stay each night. I hope to see you there. Jon.


Josue, November 15, 2000 - Hi, I have cardiomyopathy and mitral valve prolapse. Great site! I went for valve replacement surgery a month ago. The doctor was about to cut me open and I was on the respirator, then he decided to do a "tee" (transesophageal echocardiogram) and all of a sudden the valve is not leaking and they can't get it to leak other than minimally after stressing the heart. So no surgery, although at the same time he recommended I get on the heart transplant list. My EF is 25% and I arrhythmia. I have begun evaluation process for Veteran's Administration transplant list and I am pretty scared. I haven't smoked in a month (using zyban), and gave up coffee, alcohol, and now limit sodium intake. Let's pray for and with each other; it works! narvaezj@peoplepc.com


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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