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

Leeann D 11-16     questions - Coreg & sodium
 
Donna's 11-16 reply to Sally's 11-13     familial cardiomyopathy
 
Pat L 11-16     IV dobutamine questions
 
Judy Wilson 11-16     how do I cope with this?
 
Phyllis A 11-16     good news about my dad
 
Jon's 11-16 reply to Leeann D's 11-16     Coreg & sodium
 
Leeann D's 11-17 reply to Judy's 11-16     coping
 
Jack's 11-17 reply to Leeann D's 11-16     sticking to low sodium diet
 
Joe S 11-17     back alignment & heart question
 
Jon's 11-17 reply to Joe S' 11-17     possibilities
 
Pat F 11-17     seek solution to this pain
 
William's 11-17 reply to Dan Lewis' 11-8     ACE inhibitors & cough
 
Jean 11-17     update, good things can happen
 
Ted 11-17     intro, glad to find you
 
Jan S 11-18     intro, cancer survivor & more
 
Judy Wilson 11-18     meds questions, prayer request & more
 
Leeann D 11-18     Low sodium stuff!
 
Jerry F 11-18     Social Security Disability
 
Jon 11-18     need a bit of help
 
Doris Tarter 11-19     what to do about foot pain?
 
Jon's 11-19 reply to Doris Tarter's 11-19     foot pain
 
Judy 11-19     intro & more
 
Staci H's 11-19 reply to Ted's 11-17     welcome to Jon's Place
 
Staci H's 11-19 reply to Jan S' 11-18     welcome to Jon's Place
 
Bill D 11-20     everyone is welcome
 
Jon 11-20     quite right!
 
Demi 11-20     update - good news & prayer request
 
Joe S' 11-20 reply to Doris Tarter's 11-19     painful feet
 
Leland Y's 11-20 reply to Judy Wilson's 11-16     coping
 
Pat L 11-20     CHF seminar info
 
Phyllis A's 11-20 reply to Jan's 11-18     I'm a cancer survivor too & more
 
Roz' 11-20 reply to Judy's 11-19     CHF, beds & backs, & more
 
Crystal 11-21     I want to feel better
 
Gus R's 11-21 reply to Judy Wilson's 11-18     coping, meds & more
 
Joe S 11-21     enlarged hearts question
 
Ranelle 11-21     disabilities are what you allow them to be
 
Jon's 11-21 reply to Joe S' 11-21     enlarged hearts
 
William 11-21     numbness questions
 
Jon's 11-21 reply to William's 11-21     lots of numbness
 
William's 11-21 reply to Dan's 11-8     typo correction
 
Jon 11-22     need some input for articles
 
Cindy M's 11-22 reply to Crystal's 11-21     dealing with fatigue & CHF, SSD
 
Randy 11-22     EF seems to vary - questions
 
Thelma 11-22     intro, Disability questions & more
 
Betty S 11-22     update, surgery in December, prayer request
 
Bill D's 11-22 reply to Randy's 11-22     EF changes
 
Siming 11-22     seek personal ICD experiences
 
Crystal's 11-23 reply to Cindy M's 11-22     thx, my son, transplants & more
 
Tom S' 11-23 reply to Thelma's 11-22     coping with CHF
 
Jana B 11-24     welcome newcomers
 
Pete P 11-24     Cozaar questions & more
 
Jon's 11-24 reply to Pete P's 11-24     how do others view this?
 
Shirley's 11-24 reply to Cindy M's 11-22     SSD & part-time work, income questions
 
Siming's 11-24 reply to Cindy M's 11-22     meds questions
 
Jon's 11-24 reply to Shirley's 11-24     SSD & part-time work, income
 
Ben B's 11-25 reply to Pete P's 11-24     meds vs quality of life
 
Jon 11-25     bios changes & request, Suzy T question
 
Cindy M's 11-25 reply to Siming's 11-24     meds, supplements & more
 
Cindy M's 11-25 reply to Shirley's 11-24     SSD earnings limits
 
Dee 11-25     question about heart surgery
 
Jon's 11-25 reply to Dee's 11-25     heart surgery info
 
Harriet 11-25     thanks to you all for being here & more
 
Jill S' 11-25 reply to Jon's 11-24     adjusting to Coreg experience
 
Joe S' 11-25 reply to Jon's 11-24     meds vs quality of life
 
Marinus TenHaaft 11-25     what is sodium? & more
 
Ruthie A 11-25     I'm back! Zaroxolyn questions & more
 
Ruth P's 11-25 reply to Pete P's 11-24     meds, beta-blockers & quality of life
 
Ruthie A's 11-25 reply to Pete P's 11-24     meds vs quality of life
 
Cindy M's 11-27 reply to Siming's 11-24     Coreg side effects
 
Linda O's 11-27 reply to Ruthie A's 11-25     welcome back & more
 
Lisa H 11-27     prayer request
 
Renee P 11-27     back online & more
 
Bobbi Z 11-28     for RLs sufferers
 
Cindy M 11-28     SSD earnings info
 
Jan S 11-28     like this site & more
 
Phyllis A's 11-28 reply to Ruthie A's 11-25     zaroxolyn & potassium, & more
 
Siming's 11-28 reply to Cindy M's 11-27     thanks for the info & more
 
Thelma C 11-28     sleep apnea & CHF question


Leeann D, November 16, 1999 - Hi, I have a couple of questions for anyone who might want to answer or scold me, like my friend, madjack! <g> First, does it hurt anything to take Coreg on an empty stomach, or a few hours after eating? Sometimes I can't stand the thought of eating again, yet I need to take my meds. Second, since my EF is a little higher, I've been really tempted by some of my old favorite high sodium foods, and am thinking about upping my intake once and a while from 1500 to 2500mg a day. LeeAnn in Phoenix, age 39, EF 45. ddavis1057@aol.com


Donna's November 16 reply to Sally's November 13, 1999 - Hi Sally, My mother died this past May of CHF. Her 2 sisters had it as well as her only brother. Now it's my turn. My mother was older when she developed it. Her sisters were in their 50s and her brother was also in his 50s. I just turned 51. So there definitely is a connection. At least I have much better doctors than my mom and her siblings. Donna. dzak@vet.upenn.edu


Pat L, November 16, 1999 - Hi Jon and everyone, My "decline" seems to continue. My EF has dropped from 53 in July to 25 in November, with increasing shortness of breath. I am also retaining fluids, although I am maxed out on diuretics according to my doc, since my creatine and BUN numbers have skyrocketed. We are increasing my Coreg again, if I can tolerate it. The doc said if this doesn't work, he suggests I go to the hospital outpatient CHF program for IV dobutamine. Can anyone who has done this give me some feedback? It sounds so drastic! Thanks so much to all of you. Pat. patlat@yahoo.com


Judy Wilson, November 16, 1999 - Hi, This is my first time on your site. My problem is that I have cardiomyapthy, CHF and regurgitation. I was wondering if anyone else had all these same problems and how they are coping with them. I have no energy, can't do anything without being totally out of breath, and I get so frustrated since I am so used to working hard all my life and now can't make around the block. The depression is really setting in and I would like some hints or suggestions. Thank you for this site. momjudy62@hotmail.com


Phyllis A, November 16, 1999 - Hi everybody, My dad was taken out of ICU yesterday. Praise the Lord. He is eating, starting to talk and sitting up in a chair each day. He is starting physical therapy soon but has already started doing stretch exercises in the bed with a therapist. The minor setback turned out not to be a setback at all, so thanks for all your prayers and continue to pray for us. The greatest gift I could get for Christmas would be my dad home and well. Christmas of 1993, the greatest gift the Lord gave to me was my life, when the doctors said they had gotten all of the cancer and that it was contained in the one breast that was removed, so you see I am a walking, living testimony of what the Lord can do. Glory to the Lord. phylcasurv@msn.com


Jon's November 16 reply to Leeann D's November 16, 1999 - Howdy-doo Leeann, I wouldn't take Coreg on an empty stomach, really. The manufacturer gives a very strongly worded warning about it, and Coreg's absorption and half-life vary when taken on an empty stomach. About the sodium, I'll leave that lecture to Jack. <g>; Just remember that if you stress your heart and your EF drops, it may never come back up again like it did last time. Jon.


Leeann D's November 17 reply to Judy's November 16, 1999 - Hi Judy, The 3 heart problems you asked about pretty much go hand in hand, and I think most people with CHF technically also have cardiomyopathy. Since your valve is right there where your heart is pumping the blood out, when your heart is too slow or ineffecient you will also have regurgitation. When your heart improves, usually all of these area improve.
     When you look at your echo, your valve looks like a little butterfly going up and down. When I was first diagnosed, my butterfly went up, fluttered around and slowly floated back down. Of course the blood my heart had tried to pump out was coming back in by then and pooling. That's why most of us take a blood thinner; the pooling can cause clots. Now that my heart is working a little better, that butterfly goes up and comes right back down. In case you haven't read any of my previous posts, I didn't improve for over a year after being diagnosed.
     I do have some advice from my shrink about things to do when you're depressed. A friend of mine copied this down and put it on her fridge! There's no order of importance. I think some of the best ones are at the end.

  1. Call a friend
  2. Go for a walk and notice God's handiwork
  3. Hold someone's newborn baby
  4. Take a bubble bath
  5. Do something nice - it can be something tiny or something grand - for someone in need
  6. Listen to your favorite upbeat music and turn up the volume
  7. Read or watch something that makes you laugh out loud
  8. Fall on your knees and pray; not for yourself, though. Don't forget the "I'm thankful for..." part

     I hope these little ideas help. I'm sure some of the rest of you have more ideas too. I know it's denial to a certain degree, but thinking about your illness and dwelling on what you can't do really does harm you physically, so give a few of these pick-me-ups a try! LeeAnn in Phoenix, EF 45, age 39. ddavis1057@aol.com


Jack's November 17 reply to Leeann D's November 16, 1999 - Hi LeeAnn, Now you know that your higher EF is most likely due to Coreg and your other medications. Adding salt to your diet is going to make you retain water, which will raise your blood pressure, which will make your heart work harder, which will make your EF drop and will require you to take more diuretics, which will make you have to spend much more time in the bathroom when you could be doing something enjoyable. Now do you think a pound of bacon is worth it? <g>; maddjak@hotmail.com


Joe S, November 17, 1999 - Hi, I had a weird experience the past few days. My back started hurting from top to bottom and my heart rate and blood pressure increased. I could again hear my heart pounding all over when I laid down. Nothing seemed to help. Then I noticed my office chair was out of adjustment. I adjusted it, my wife gave me a back rub, I took ibuprofin and lo and behold, I feel great. It sure seems to me there is a strong connection between how the middle of the back is adjusted to how your heart feels. I know when my chiropractor used to adjust my back I felt great for days. I sure wish I could find a good one up here. Does anyone have any comments on this? Joe S. JoeS@StevensonLighting.com


Jon's November 17 reply to Joe S' November 17, 1999 - Hi Joe, Having worked at physical jobs all my life, I know the value of a good chiropractor. Unfortunately, good ones are few and far between. My own retired last year when Walgreen's bought his office/home location for an obscene amount of money. His pet peeve was people saying he "put things in place." He said - and it's fact - that what chiropractors do is to move a joint or muscle through its entire range of motion as quickly as possible, not "put things back in place." So, stretching exercises and strength training for specific trouble areas can really help until you find that good chiropractor! Just be careful not to get too lightheaded when stretching and use low weights for your strength training. If you've never lifted weights before, be sure to talk to your doctor first. Jon.


Pat F, November 17, 1999 - Hello everyone, I just discovered this informative site. In February of 1998, I had my aortic valve replaced and my mitral valve repaired. I have recovered from the surgery, I think. However, I have scarring of the heart due to radiation I received in 1970 for Hodgkin's Disease. So I take Toprol (couldn't tolerate high enough doses of Coreg), Zestril, Coumadin, and potassium. I feel so-so in the mornings, but around lunch and after, I get exhausted, have pain just below my rib cage and sometimes also internally in my back. It feels as though something foreign is on my diaphragm or something is swollen. At first, I thought I was just recovering from surgery. They had to open up my chest twice within 2 weeks, plus do CPR because I went into cardiac arrest. But we are coming up on almost 2 years since the surgery, and this pain persists. My cardiologist can't find the cause. He thinks it might be my liver reacting to cardiac failure.
     My question: Has anyone had this pain? What is it? Can it be helped? Thanks. loboes@swbell.net


Wiliam's November 17 reply to Dan Lewis' November 8, 1999 - Hi Dan, I was on Zestril but it made me cough constantly and my BP ran about 80/50 with a pulse rate of 45. The doctor switched me to 15mg Avapro (irbesartan). No more coughing and my BP is 103/60, with a pulse of 55. My doc is on the transplant team at the Cleveland Clinic. sonofsteven@prodigy.net


Jean, November 17, 1999 - Hi, After seeing my cardiologist, my medications were changed. He discontinued my Lanoxin, reduced Coreg to 25mg once a day and left the Zestril at 20mg once a day. I feel like I did before I became ill last December. I will have a repeat echocardiogram next fall. He also indicated that my CHF was probably a result of a virus. I believe the Coreg had a major impact on my recovery, and also the nurses in the heart failure clinic who were responsible for my treatment during that process. They were so supportive. I will still maintain a low salt diet since I lost 20lbs and that feels good too. There is hope for all of you and prayer does help too. Thank you so much for this site. drrusch@ties.k12.mn.us


Ted, November 17, 1999 - Hello everyone, I am new to the board and am glad to see it. I am 37 and have CHF and a few more, but that is the main one. I have been wondering if what I was going through was happening to others and I see it is. I am really glad to find this board and would like to thank Jon for this place on the Net. goldwing10@home.com


Jan S, November 18, 1999 - Hi everyone, I just found this site tonight. Thank you, Lord! I am 55, and had radiation and chemo in the late 1970s for inoperable caancer. I had been doing well for 20+ years. Now the cancer cure has brought on some new problems. I am diagnosed with dilated cardiomyopathy, pulmonary restrictive/obstructive disease, I have a pacemaker, and had AV node ablation in 2/99. I was evaluated for a heart/lung transplant but was turned down because of the extensive scar tissue on my heart and lungs. I take cardizem, digoxin, Coumadin, Flovent, servent, Flonase and a diuretic. My doctor wants to change me next month from cardizem to an ACE inhibitor, so I was sure glad to find all this good information on Jon's site. I'm nervous about changing. I have been feeling pretty good and though I rest a lot, I'm still out and about. Good to be with you all, I feel like I've found a great support group! Jan. geschuppja@aol.com


Judy Wilson, November 18, 1999 - Hi, I would like to thank the ladies who answered my first letter in this Web site. I noticed that the drugs I am on are not listed in any of the letters here. I am on the following: 100mg atenolol, 75mg spironolactone, 180mg Lasix, and 4mg Coumadin daily. Could this be because of the cardiomyopathy, plus fibrillation, CHF and regurgitation? If anyone else has been on these drugs and had any side effects, I would really like to hear from you. The depression is really bad and if it wasn't for the Xanax I take to help me keep an even keel, and most of all, Gods help, I would have committed suicide by now. I am sure of that.
     Everyone, please say a little prayer for me. The man in my life walked out and it hurts. I have my wonderful kids but it is not like having that special person. Thanks again, everyone. Judy. momjudy62@hotmail.com


Leeann D, November 18, 1999 - Hi Jack and Jon, OK, ok, I get it. I'm even thinking about lowering my salt even more and not taking any of my "as needed" diuretic. You know, a lot of this disease is not in our control, but there's absolutely a few things that are completely in your power and one is the food that goes into your mouth! I don't know what I was thinking. Just looking at these pickled jalapenos and wanting to eat the whole jar! (I didn't) I knew I shouldn't, I just needed a good lecture! LeeAnn in Phoenix. ddavis1057@aol.com
 
Jon's Note: Hey LeeAnn, Pickling low sodium jalapenos is truly a snap. Ask Jack or me for a recipe. <g>;


Jerry F, November 18, 1999 - Hi, Just a note to give hope to those who are trying for SSD. They approved my claim today, after 7 months, on my second try! Good luck! bigbear49@webtv.net


Jon, November 18, 1999 - Hi everyone, Since no one has answered Brad yet, I am asking you all to take a look at his post and offer him any information on these meds that you can. Read his post at www.chfpatients.com/heartforum2.htm#BradH11-15. I am not complaining - not at all - but I just don't have both the time and energy to answer every post. Any help you can give me answering posts - by e-mail or post - is a bigger help than you think. Thanks. Jon.


Doris Tarter, November 19, 1999 - Hi, I've been a fan since June. I just never had enough nerve to post before. I have CHF with an EF of 25. I'm doing better with a lot of meds but my feet hurt so bad I can hardly stand it. The pain isn't in the same place every time. They feel like raw meat. Is there anything I can take or do to help? tarter@wico.net


Jon's November 19 reply to Doris Tarter's November 19, 1999 - Hi Doris, Welcome to the foot/lower leg pain club. It happens to a respectable percentage of CHFers but no one seems to have a clue why. Be sure no "normal" cause is evident with your doctor first. I take a non-narcotic pain killer called Ultram - 100mg 3 times a day, because none of my docs can locate a cause to treat. Jon.


Judy, November 19, 1999 - Cheers, everyone, I'm new to the group and delighted to meet new people. Early this year I developed viral pneumonia, which ended up in CHF and cardiomyopathy. Tests were run for 53 different viruses and wouldn't you know, I didn't have any of them. That was the bad news. The good news is that I lost 23 pounds of fluid, so I wasn't fat - it really was water retention. My heart is the size of 3, working at approximately 25%. I am taking captopril, digoxin and just today, switched off Lasix to Aldactone. Since my blood pressure has always been on the low side, I will start Coreg after Thanksgiving. My doctor suggesed 100mg CoQ10 3 times a day, with ¼ cup freshly ground flax seed, followed by one gram twice daily. So I take those at the same time I take the captopril. He also suggested taking them as soft gel capsules, liquid or powder capsule.
     Any medication I get (or vitamin) that is a hard tablet, I crush them into powder and put into a small amount of juice. My doctor informed me that way more medication is digested quickly and easily as opposed to hard tablets. I order my flaxseed directly by phone from Heintzman Farms. Cardiac rehab 3 times a week has also helped. It's very hard for me not to be working. I loved my job and my co-workers. If anyone knows where to purchase an adjustable bed at reasonable cost, please let me know. That's all for now. Keep a song in your heart and a laugh on your lips. jschulth@nortelnetworks.com


Roz, November 19, 1999 - I just wanted to call to the attention of my fellow CHFers a series of articles in this week's Philadelphia Inquirer on the personal experience of the paper's health writer in his decision between angioplasty and bypass surgery. It has been summarized along with an opportunity to post questions to a panel of cardiac experts at http://health.philly.com/. I hope there is something there that is useful to someone. Roz. RWarriston@aol.com

Staci H's November 19 reply to Ted's November 17, 1999 - Welcome to Jon's Place! You have found a great place for unlimited support. You will find a lot of great information about your condition by reading The Manual. We're glad to have you with us. Take care and God bless. Flamioli@aol.com


Staci H's November 19 reply to Jan S' November 18, 1999 - Hi Jan, Welcome to Jon's Place! A support group we are, and happy to have you with us. You will find a lot of valuable information by reading The Manual. You will also find information on Ace Inhibitors. Which diuretics are you taking? God bless. Flamioli@aol.com


Bill D, November 20, 1999 - Hi everyone, Every once I like to remind people that Jon doesn't restrict his site to just Christians. Agnostics, atheists, Muslims, Jews, Hindus, Confucian Taoists, are welcome too. We just shouldn't preach about it! <g> We're all in the same leaky boat and we can all use the information and support we find here. Bill Drummond. billdog@gate.net


Jon, November 20, 1999 - Hi everyone, Bill is quite right, everyone is welcome here. In the USA, we have become severely pressured to separate religion from everything else. To see Christians speaking about Jesus freely outside a purely religious setting leads some to assume this is a Christians-only area. Not so. It's a shame a country founded on Christian principles has come to that point. Still, here you may speak freely about your religion whether it's Christianity or not, as long as it is pertinent to - for instance - how you cope with chronic illness or depression, etc,... rather than straight-out attempts to convert others. After all, Jesus out and out scolded me for forgetting to help everyone. He wanted me to help everybody, Christian or not. Jon.


Demi, November 20, 1999 - Hi, I just wanted everyone to know that my EF has gone from 30 to 45-50. My left ventricle size has decreased also. Thanks for all of the prayers that you sent up for me and thanks for the e-mails of encouragement I received. Demi. alott@sowega.net
     PS. Keep me in your prayers!


Joe S' November 20 reply to Doris Tarter's November 19, 1999 - Hi Doris, I think sore feet and legs were one of the first symptoms I had that my heart was getting worse than when I was a kid. My feet were so sore I couldn't stand still. I think it is simply another symptom of poor circulation. All my life I have experienced an ice cold, sweaty neck when I walk on a hot day. It's sort of like being a diabetic. One of the scariest and most expensive experiences I had was when my back went into spasms. Ibuprofofen cured it instantly but make sure you take it after eating. Sometimes the simple things work best. Joe S. JES@StevensonLighting.com


Leland Y's November 20 reply to Judy Wilson's November 16, 1999 - Hi Judy, I am in the same boat as you - CHF since March, 1999. I know exactly how you feel. I have not done a lick of work since March 10, 1999. I am "vegetable" literally. I have worked for as little as 90¢ per hour back in the late 1950s, 15 hours at a stretch. I was chopping trees the March day it happened.
     Today, 8 months later, I look back on my life and realize how much I have done, and at the same time, feel as if nothing has been done. Thank God for my wife and family. They have made this terrible calamity into an acceptable clime. I am not spouting religion nor I am spouting philosophy. You will have to form your own thoughts, but within a certain period of time, if you allow yourself to reflect backward, how wonderful it becomes to be able to see tomorrow again. You have to put yourself in a different frame of mind. You have to come to grips with yourself. You cannot allow your handicap to become a handicap. You have to think positive thoughts. Stay on the Internet and read Jon's "The Beat Goes On." As you can see, there are many, many people in the same situation. Learn new hobbies and interests. Correspond with anyone at Jon's Place. The more you talk, the more you can accept what you have today as just another pebble overturned in your footsteps. I would love it, if you respond and let me know how you are faring each day. Love and salutations, Leland. LLYEE@surfside.net


Pat L, November 20, 1999 - Hi Jon and everyone, I received a brochure in the mail today advertising a program called "Managing Heart Failure, Improving Outcomes for the Heart Failure Patient" It is a one-day practical program on the most recent developements in heart failure and treatment. It is designed for nurses, physicians' assistants, and other healthcare professionals, but I definitely plan to attend and am sure they will take my money and not ask me if I'm a nurse! One session will be held in Buffalo, New York, January 26, 2000, another one in Syracuse, New York, January 27, 2000, and another in Latham, New York, January 28, 2000. I am going to call the company to find out if they are offering it anywhere else in the country, and I will be glad send more info to anyone interested. The cost is $129, which is a lot of money but I hope, worth it! Send me an e-mail if you want more info. patlat@yahoo.com


Phyllis A's November 20 reply to Jan's November 18, 1999 - Dear Jan, I'm a survivor too. I'm 48 years old and I had chemo and radiation and a mastectomy for breast cancer. It is almost 6 years that I am cancer free, thank the good Lord. I went back to work in 1995, when I started having shortness of breath so severe I could not walk half a block. I was diagnosed with HCM and an enlarged heart, congestive heart failure and asthma. I take 360mg Verapamil twice a day, was on tenormin but it did not agree with my asthma meds. I also take 160mg Lasix in the morning and 80mg in the evening, and 20meq potassium twice a day. I also take Serventand and Azmacort, and albuterol for emergencies but I take it regularly some weeks. My cardiologist recently wanted to put in a pacemaker but the increase in my meds helped a lot. I'm grateful to Jon and friends for this site and to be able to vent. phylcasurv@msn.com


Roz' November 20 reply to Judy's November 19, 1999 - Welcome, Judy, I'm sorry you have need of Jon's Place but it is nice to have such a cheerful CHFer aboard. I am responding to your query about beds with a possible suggestion. After much experimentation, I found that sleeping in my irreplaceable leather recliner has "cured" my back pain, including pain in the thoracic spine that I sometimes had difficulty distinguishing from angina and helps, of course, with the coughing problem. Before the arrival of CHF, I had "tried on" a good many chairs until I found one that fit and such a search might be tiring for you. My cardiologist fully approved of this arrangement. I'm happy. My family seems to think it's pitiful. <g>; But they have to make their beds in the morning! Roz. RWarriston@aol.com


Crystal, November 21, 1999 - Hello everyone, I rarely post myself but I read posts all the time. I am 27 years old with an EF of 34 and a FS (fractional shortening) of 20. I take digoxin, Lasix, Zestril, atenolol and Diovan. These meds don't seem to be helping me feel any better. I guess they take some of the stress off my heart but my blood pressure is so low I don't have the energy to do much. My doc recently talked to me about transplant and also SSD/SSI. SSD/SSI seems rediculous because I certainly am not a disabled person. Heck, I'm just a kid still. <g> Anyway, I just want to feel better. God bless all! CP543@aol.com


Gus R's November 21 reply to Judy Wilson's November 18, 1999 - Hi Judy, Leland gave a better response to your frustration and depression question than I could, but I would like to add one thought that helps me. I look at my pre-CHF years as one life and my CHF years as another. Then I remind myself that my present life is not all bad, and my previous life was not all good.
     Your meds sound pretty standard to me. I take Lasix and Coumadin too, and have had no problems with them. Lasix is to eliminate the excess water that CHFers tend to accumulate, and Coumadin is a blood thinner used to keep blood flowing smoothly and prevent the formation of blood clots. If one has fibrillation, one is susceptible to blood clots in the heart which can go from there to the brain and cause a stroke. I wasn't sure about atenolol and spironolactone, but Jon has the info on them and others at: The Manual.
     Finally, like everyone else here, I would be happy to help you in any way I can. The last I knew, my ISP had banned hotmail, so you probably can't send mail directly to me but I read the posts here every day and put in my 2¢ worth from time to time. Best wishes to all, Gus R. gus13@net66.com


Joe S, November 21, 1999 - Hi, Since I have had a bad heart for 55 years now and have heard scores of doctors opinions over the decades, I keep wondering about one thing. For many decades my doctors kept telling me my heart was strong because it was so large. It had compensated for the valve damage, therefore I would never have a heart attack. They also told me I would never have a stroke because my blood was so thin. Of course now I have CHF and all bets are off, but now everyone says a large heart is bad. Yet yesterday in my local Reno paper it said an athelete's heart is good because it is large. Who is right here? The other doctors were the old school general practioners, but maybe they weren't so wrong after all. Joe S. JES@StevensonLighting.com


Ranelle, November 21, 1999 - Hi, Leland's reply was go great that I wanted to share a poster I have on my wall at school. It says, "Attitudes are the Real Disabilities" rcdrb@aol.com


Jon's November 21 reply to Joe S' November 21, 1999 - Hi Joe, This is a direct quote from Marc Silver's book, Success With Heart Failure page 36.

     "The 'cardiothoracic ratio' ... is ... the amount of the chest cavity in its transverse diameter filled by the heart. The normal ratio is less than 50%. A heart that fills a greater proportion of the chest cavity signifies an advanced stage of heart failure. Often, a person has heard that they have an enlarged heart and may think that this means a heart that is stronger than normal, since for instance, an 'enlarged' arm muscle would probably be a stronger one.
     Generally, however, an enlarged heart muscle is overstressed or damaged and usually works less efficiently than a normal heart muscle. Any disease that causes heart failure may also cause an enlarged heart and, in fact, many doctors use the term as a euphemism for heart failure. Occasionally, an enlarged heart can mean a heart that is thicker than normal due to high blood pressure, and, again, this is not necessarily a more efficient heart muscle. Sometimes, a well-trained athlete may have an enlarged heart that functions, normally, or even supernormally, but this is the exception to the rule."

William, November 21, 1999 - Hi, I asked before, but does anyone get the numbness feeling? My left arm and hand always feels like it is asleep. Today the left side including my face is that way. I've had other days like this. Where my right side also was numb, or feels just like it's asleep. sonofsteven@prodigy.net


Jon's November 21 reply to William's November 21, 1999 - Hi William, When this numbness is occasional or intermittent, it's fairly "normal" for a CHFer. However, if it is constant, lasts for a long time at a stretch, or affects an entire side of your body, I strongly suggest you talk to your cardiologist and your regular doctor about it, and ask if you need to see a neurologist for a check-up as well. Jon.


William's November 21 reply to Dan's November 8, 1999 - Hi, In my reply, it stated I was on 15mg of avapro. It should be 150mg of Avapro. Sorry about the typeO. sonofsteven@prodigy.net


Jon, November 22, 1999 - Hi everyone, Well, in addition to all the other junk on my site, I have gotten at least one firm commitment from a reputable CHF specialist to write short articles on the topics we choose. So everyone, if there is any aspect of CHF, coping with it, its treatment, diagnosis or whatever, please e-mail me as soon as possible here. I would just send him some topics but even though I am a CHFer, my questions might not be the most common ones, so I really need input on this one. Thanks.
     I haven't forgotten the people who have sent new bios! Honest. I just haven't found time to do them yet. Jon.


Cindy M's November 22 reply to Crystal's November 21, 1999 - Dear Crystal, I'm sorry that this is not much consolation, but constant fatigue is a hallmark of CHF for many of us. I have what I call my "high energy" days, but a lot of the time I'm tuckered out. The medication may stabilize and even improve our symptoms of heart failure, but we continue to experience certain symptoms of CHF or side effects of the medications. Yes, you are a young person to be burdened with this illness. Unfortunately, there are other folks with CHF that are your age and even younger. This disease does not discriminate.
     Are you seeing a specialist? I remember when I was first diagnosed in August of 1998, the cardiologist who diagnosed me blurted out that I might need a transplant (my EF then was 10%). I was scared to death! Then he referred me to a group of heart failure specialists, and they told me we would first try to medically manage my condition before we thought about transplant. I was fortunate enough that my EF went from 10% to around 35% in a year's time, and my heart shrunk back down to near-normal size.
     But I still can't work full-time. I tried it and it wiped me out, so last July I applied for SSD, and as of last Friday, they direct deposited 2 months worth of checks into my bank account. I am working part-time as a substitute teacher, which I plan to continue. The maximum amount a person can make working while on SSD is an average of $700 per month. Any more than that, and over time your benefits will be decreased. I realize this is tough to accept, but if you can't work full-time, maybe you should apply for SSD. I wasn't planning on doing it either, but fate intervened and boy, am I glad that the government saw fit to approve my application. Best of luck to you. Cindy M. cleighmc@aol.com


Randy, November 22, 1999 - Hello all, I love this site and although I've only posted once previously, I continue to lurk and learn from ya'll. I'm 37 and was diagnosed with IDCM in December of 1999, and have had 3 echocardiograms since. My EF was 35 at initial diagnosis, but that increased to 44 within six months of being placed on medication. My last echo showed my EF had dropped to 37 from 44, and I was wondering if it were normal for an ejection fraction to vary like that? I didn't have a chance to talk to my cardiologist after the appointment and I don't know if this is something I should be concerned about. I won't have another appointment with my cardiologist for about 4 months. Any info would be appreciated. surajoch@hotmail.com


Thelma, November 22, 1999 - Dear Jon and fellow CHFers, This is my first post and I must say I am very impressed with your Web site and the caring, supportive people who have posted. Let me say first that I am a single, 43 year old pediatric/neonatal nurse as well as a former "cardiac kid" (repaired Tetrology of Fallot), and most recently a newly diagnosed CHFer with DCM (July of 1999). My EF is about 30% and VO2 max around 13. It was always the right side of my heart that was massive and didn't function well due to the congenital defect, but now my left side is a mess, not to mention the arrhythmias!
     I have been remaining positive throughout this ordeal, but have found the "not knowing if I will work again" or "be disabled" difficult to handle. How many of you are on full Disability? I did read The Manual, which was very helpful. To make this summer more of a nightmare, I was also laid off just prior to my illness. I had to sell my house and move back to live with my father due to finances. I'm very blessed to have a supportive family, and yes Jon - a wonderful chocolate lab named Mo! Nothing beats a dog! I would love to hear more positive stories of healing and correspond with others for support.
     Oh yes, I'm also in cardiac rehab, which has helped me to feel better and assist with the positive outlook. My meds are Lasix, captopril, Zebeta (anyone else on this?), baby aspirin, Paxil and asthma inhalers. My thoughts and prayers go out to all of you dealing with the tiredness, the fear, and uncertainty of this disease. Thelma. tcull@prodigy.net
 
Jon's Note: Zabeta is a brand name for the beta-blocker Bisoprolol (let it load)


Betty S, November 22, 1999 - Hi All, I haven't posted for awhile but I read every day! I have been busy being a soccer mom and trying to work, and I am tired much of the time. I just got the report from my cardiologist about my MUGA and drug-induced stress test. They were yucky. I felt like a Mack truck ran over me for the rest of the day. My EF was 64% when all this started 2 years ago but it has dropped to 43% as of this test. I still have not been able to drop the weight and have actually gained over the past year.
     I have made a tough decision over the past couple of weeks. After consulting with several specialists - especially the cardiologist and the surgeon - I have been scheduled for a gastric bypass on December 9. I hope that you all keep me in your prayers. The doctors' seem to think this will help me a lot. I pray for all of you every day! eswerda@ucsd.edu


Bill D's November 22 reply to Randy's November 22, 1999 - Hi Randy, Don't worry about your EF going from 44 to 37. An echo can't measure it closer than that. Besides, we've found it goes up and down like a yo-yo. What's important is how you feel. I felt better at 17 than I did at 37. Bill D. billdog@gate.net


Siming, November 22, 1999 - Hi everyone, I am a new poster on this Web site. I was diagnosed to have dilated cardiomyopathy 3 years ago. I am taking Cozaar and Coreg now. My doctor suggested that I have an implantable defibrillator to reduce the risk of ventricular tachycardia. Could anyone already with this device give me some information on its effects on everyday life? Your information is very much appreciated. sli203@nwu.edu
 
Jon's Note: Be sure to visit http://www.heart-help.net/ and see the links at ICDs & More


Crystal's November 23 reply to Cindy M's November 22, 1999 - Hi, and thank you so so much for your reply. I have congenital heart failure. I was born with it. I have a son who was born with it and was transplanted at 13 months of age. He is now 4 years old and a perfect little man. I admire him truly. He is an inspiration to me. I had no problem whatsoever taking care of him and his needs but when it comes to myself, I am quite reluctant. I can't tell you why. I have never been too afraid myself because I feel that I am so young yet that I just might have a chance to get better. I don't know anything about this CoQ10 or (I'm sorry, I don't know what it is called or anything about it). Please let me know. Again, thank you for your words of advice; I do so appreciate it. My son is doing so well now after transplant, and is on so much less medication than I am. That is why my docs have asked me to look into transplant. I am young enough that I might have a bright future to look forward to and also be around for my little baby. Imagine that, 2 transplant recipients in one family! Thank you again for responding. God bless. Crystal. CP543@aol.com


Tom S' November 23 reply to Thelma's November 22, 1999 - Hi, and I am sorry to read that you need to come to a Web site like this. I have been on 100% Disability for 3 1/2 years; having to be "recertified" once about 6 months ago. My diagnosis was Idiopathic Dilated Cardiomyopathy and the prognosis was bleak at best, being given a 3-5 year life span following diagnosis. This marks my fourth year since onset of CHF and while I don't feel great, I manage to run a house with 6 children, ages 6 to 17, playing "Mr. Mom" and I rather enjoy it. I think the key to any life change, and that includes lifestyle, is to adapt and create a new way of doing things. Accept the fact that things aren't going to be the same and go on from there.
     While I can't hold down a full-time, or even part-time job in my chosen field (publishing), I have translated that into using those talents and skills on a voluntary basis and end up filling a lot of hours that way. Currently I compile, lay out and publish a 4 page bulletin for my wife's church. I also have assisted friends and even family members in computer searches for jobs; writing and sending resumes, etc. So far, anybody I have worked with in their job search has gotten a job in their field within a few days. One got her job the very next day, after looking independently for over 6 weeks. I also enjoy baking cakes and cookies and breads for my kids so they have something to look forward to when they come home from school. When I am up to it I also cook large family style meals. While these are not customary roles for the "man of the house," they are nonetheless a role that has to be filled and I am available so I choose to fill it. There is always something in the wings for a person to do and I have found great satisfaction in not only my volunteeer work, but the closeness this family feels because of this thing called CHF. Good luck and hopefully, good living. biggerbhoy@hotmail.com


Jana B, November 24, 1999 - Hi to all the new people, You are going to learn so much here. Welcome to the site nobody wants to belong to! Jana B, age 36, EF 21%. JByers4u@aol.com


Pete P, November 24, 1999 - Hi everyone, Long time reader, first time poster. I'm a 44 year old male with A-fib and CHF with an EF of 35, up from 25 last year, before meds. I take 40mg Monopril, 20mg Lasix, and 5mg Coumadin. My blood pressure stays around 100/70. I just went for my one year checkup and my doctor started me on 25mg Cozaar in addition to my other meds. He believes he should be as aggressive as possible now and wants me to see him retire. I told him about this Web site and asked him questions about other drugs and treatments that I learn about here. I am in reasonably good shape and still can walk 4 miles in under an hour and run a medium size business. Since I've started the Cozaar, I seem to have lost ground. I'm tired all the time, and this morning I woke up with the room spinning and the nausea that goes with it. Has anybody else had any reactions to Cozaar? How aggressive should I let the doctor get? I know that my heart will continue to weaken over time and I will cease to be able to do the things I do now, but should I feel bad now for the promise of more years later? mudmonster@worldnet.att.net


Jon's November 24 reply to Pete P's November 24, 1999 - Hi Pete, That's a very good question, but how can anyone else answer it for you? As my own CHF has progressed over the past 5 years, I have asked myself the same things time and again. The answer changes with how I feel, so I have learned to stretch out my decision making process over more time, to be sure no important decisons are made on the spur of an emotion quickly passing.
     I forgot to take my Coreg one day not long after getting accustomed to the 50mg twice a day dose. It was the day my wife had surgery and in my desire not to mess up the scheduling, I just plain forgot to take the little boogers. It occurred to me later that day, that I was thinking clearly for the first time in a long time and I had to ask myself, do I really want to give up this clarity for time in a worn-out body? Do I? For now, yes. I still function well enough mentally to handle my responsibilities as father and husband and maintenance man here. However, the time may come that I will be willing to trade more severe physical symptoms for mental clarity. I honestly don't know, but it's possible. I realize this is a bit different than your situation but I think the basic issues are the same.
     So, I suppose you just have to ask yourself what your real priorities are, and what it will require on your part to achieve them. Write it down, ponder it, don't rush into anything quite yet. Bear in mind, though - and I think we all forget this sometimes, because drugs keep us feeling artificially well - that CHF is a very nasty case of misery indeed, when we start our final decline. Reducing meds now may make that decline even more miserable, I just don't know. Lots of stuff to consider, decisions to make, and this time, they're all yours. <g>. We each face our own.
     Does anyone have any thoughts on the trade-offs involved between meds and coping with CHF? I don't suppose there is a right and wrong about it, so speak freely. About the only thing that winds my clock is people eating high sodium foods while taking diuretics. Thought I'd warn ya! <g> Jon.


Shirley's November 24 reply to Cindy M's November 22, 1999 - Hi Cindy, In your post, you mentioned that you receive SSD and you believe that while on SSD a person can earn up to $700 per month. I receive SSD, and the literature I have from SSA states that I can only earn up to $50 per week. Any more than that and I am considered to be returning to work under their "trial work period" of 9 months, after which my SSD is discontinued. Do I have the wrong information? I only get $300 per month for Disability (a paltry amount) and would dearly love to try to work part-time and help my family out more financially! Thanks in advance for any info you or anyone else can give me. Shirley, DCM and CHF as a result of chemotherapy for AML. srgrandl@snet.net


Siming's November 24 reply to Cindy M's November 22, 1999 - Hi, It is nice to hear that miracle has happened to your heart within the last year. I am 30 years old and was diagnosed to have dilated cardiomyopathy with a EF about 10%, a similar situation that you experienced last year. Although I don't have typical CHF symptoms now, I do feel palpitations occasionally. I am still working normally in school. My docs have me on Cozaar and Coreg, and I am also taking CoQ with them. I would greatly appreciate your response about the medication that you have been on in the last few months. I know that my condition might be quite different from yours but your miraculous results impressed me so much that I feel I can have some good advice from you. Thank you in advance. Happy thanksgiving. God bless all. sli203@nwu.edu


Jon's November 24 reply to Shirley's November 24, 1999 - Hi Shirley, I do not have any personal experience in this but you can get some information straight from Social Security at their Web site at this page. I always like to get it straight from the horse's mouth on issues this important! Plus, remember that SSD and SSI may have different rules and requirements. Be sure you get the right info for your own situation by calling SSA and asking. We are always interested in their answers, too! Jon.


Ben B's November 25 reply to Pete P's November 24, 1999 - Hi, I thought I'd comment on this meds vs. quality of life issue. With the rate of medical advances these days (there was no Coreg and little ACE inhibitor use 10 years ago), nobody really knows about disease progression. With the rapid advance in research, a remarkable new medicine could come around in a couple years or so. If we stopped our medications prematurely, we might die a short time before a great new drug came around. We never know. Generally, we can learn to adapt to meds, and if the side effects are too severe then we can quit.
     My feeling is that this condition should be regarded much like diabetes - a chronic, potentially fatal condition that affects different people very differently and in many cases can be controlled very well with medication. These dire predictions that we have 5 years to live just do not seem to bear up under the evidence I've seen from reading this site, countless books, and my personal knowledge of CHF patitents, including myself.
     PS. Jon, I see you are up late. Are you having trouble sleeping again? bdbrinkman@ieee.org
 
Jon's Note: Yep. Sick with a cold or something to boot, just the past few days


Jon, November 25, 1999 - Hi everybody, and happy Thanksgiving to all my fellow Americans. I have finally gotten the bios face-lifted and they should be a lot easier to read now. I'll try to add the new ones this weekend sometime. Please read your own bio, and let me know if I goofed anything up in the process. Thanks! Also, has anyone heard from Suzy T? Her e-mail address bounces on me and I'd hate to pull down her bio if she's still here somewhere. To everyone who sent Happy Thanksgiving posts, I apologize but there's no way I can get that many posts put up in time for the occasion, so I had to let them slide. Jon.


Cindy M's November 25 reply to Siming's November 24, 1999 - Hi Siming, I'm glad to share what meds I'm on, though some of them get juggled from time to time. Since almost the beginning of my heart failure, I've been on 300mg Capoten daily. I'm told by the pharmacist this is a high dose, but since I was only 38 when I got sick, my heart failure doctor told me he wanted to treat my condition aggressively. Then there's Lanoxin at 0.25mg daily, and Cozaar at 50mg daily. I don't retain fluids, so they took me off Lasix (diuretic). I think some of the heart meds have a diuretic effect also. For supplements, I take a good multi-vitamin which includes selenium, 1000mg of Vitamin C, 400IU of Vitamin E, 100mg Thiamine, 100mg CoQ10 in softgel form and Calcium, Magnesium and Zinc, a combined supplement. These are all taken daily.
     Then there's the issue of my difficulty sleeping. I took Ambien for awhile (not every night) but it stopped working. Now I take 30mg Remeron at night. It's an antidepressant, but taken in this amount, it has a sedative effect. I also take 4mg Klonopin (an anti-anxiety drug) daily, as well as 200mg Wellbutrin (an anti-depresssant). I have a sinus condition unrelated to CHF and I take Claritin for it.
     I can't tell you Siming whether my good luck in regaining some of my health is due to these drugs or my cutting down on sodium and fluids and faithfully exercising. Maybe a higher power is looking out for me. I wish you the very best and it's my hope that you will have improvement in your condition too. Best, Cindy, age 39, EF 35-40%. cleighmc@aol.com


Cindy M's November 25 reply to Shirley's November 24, 1999 - Hi Shirley, I'm not an authority on SSD and I would hate to steer anyone in the wrong direction with erroneous information. With that said, I'm happy to share my understanding of the amount a person can earn while on SSD and not lose benefits. I got my information through links on Jon's SSD page and from my local SSD lady, who told me that the limit on what a person can earn and still collect full benefits rose from $500 per month to $700 per month effective July, 1999. I wish you the best and hope that you will soon be able to earn more. Cindy M. cleighmc@aol.com


Dee, November 25, 1999 - Hi, I am a 44 year old female who was diagnosed with cardiomyopothy, CHF, valve diease and an EF of 30%. I am taking Coreg, spironolactone, Lasix and other drugs. When I last talked with my doctor, he suggested a surgery where they cut out the bad part of the heart and re-attach the good part to make it smaller and stronger. Has anyone heard of this? Please let me know. Thank you. deekerr@flex.net


Jon's November 25 reply to Dee's November 25, 1999 - Hi Dee, A good place to check for information on CHF surgeries is my Surgery page. I think you are looking for what is called the Batista Procedure, also called "ventricular remodeling." Let us know if you need more information after checking out the Surgery page, ok? Jon.


Harriet, November 25, 1999 - Hi, and to all of you, I wish a very happy Thanksgiving. I feel very blessed this year because I was given a computer and miraculously found this site and all you wonderful people. I have recently needed your specific prayers and thoughts, and I got both. The situation has not changed - not that I expected that - but the prayers and e-mails have helped my ability to cope and have made me feel all warm and cuddled. Thank you for that; I love you all. We are all in the same boat and although we would all pick a cruise liner for the trip, this old rowboat is packed with love and understanding. There's no room for shuffleboard, but there is room for cyber hugs and handshakes that mean something. Love to you all. hprince57@aol.com


Jill S' November 25 reply to Jon's November 24, 1999 - Hi Jon, I had a similiar experience with Coreg, even though I am on a very small dose. I am determined to slug it out for awhile longer but frankly, I have not felt good since I started the drug. Interestingly, my dad takes Atenolol, another beta-blocker, and has early Ahlzheimer's. His neurologist would like to get him off the drug because beta-blockers mess up your memory so much. I am now up to 6.25mg Coreg twice a day. My BP is normally low and these drugs lower it even further but for now, my BP is staying up. Frankly, I think there will come a day when I will not be able to stand the Coreg anymore. It hasn't changed my EF at all. jilschro@jps.net


Joe S' November 25 reply to Jon's November 24, 1999 - Amen, amen, Jon. No, I don't have anything to add to that great note you wrote to Pete about mental clarity and meds. I have made drastic choices over the years, but I refuse to sacrifice my mental clarity for a few more years of foggyness and depression. It is so important to take time and reason all of this out, though. It also takes a lot of trial and error before one gives up any medication a doctor prescribes. Jon, you and The Beat Goes On do a marvelous job. Keep up the good work. Joe S. JES@Stevensonlighting.com


Marinus Tenhaaft, November 25, 1999 - Hi, I have not yet finished reading all the Q and As. English is not easy if you're not American and a newcomer on the Web but so far, I like it. I'm a CMP patient too, for 3½ years now, but I'm still going strong! What is sodium? I will put this in my favorites. tenhaaft@hetnet.nl


Ruth P's November 25 reply to Pete P's November 24, 1999 - Dear Pete, As Jon says, we each have to make our own decision. When I went on Cozaar, I had no extra symptoms or side effects. Like all of us, I had the usual bad days and the fatigue. Then I went in a study where my Cozaar was removed for 2 weeks. I don't know if I was on the placebo or the "real" study drug but the result after 2 weeks was heart failure big time. I spent 3 days in the ER and 4 in CCU. My EF has dropped from 33 to 20.
     Now I am on coversyl and Coreg, along with Lasix and Lanoxin. I will probably have my Coreg dose increased next Monday. I have had one increase so far. I am at 6.25mg twice per day. I feel quite queasy at times and lightheaded when I move too fast. Also my fatigue has increased but because so many of the great people here have shared their experiences, I am going to hang in for a few months and see how it goes.
     My new cardiologist says there are some very promising meds on the horizon and he is optimistic that the quality of life for us CHFers will improve. However, wise old owl Jon is correct and the doctor confirms that these will not cure our condition and we will have to monitor our bodies for the rest of our lives. I hope this helps. Ruth P. rpow@total.net


Ruthie A, November 25, 1999 - Hi everyone, I am finally back online! Please note my new e-mail address. I have not had time to read all the past posts in The Archives so there are a lot of new and unfamiliar names. Welcome to all the newbies. For the "oldies," here is an update. I did very well with detox even though it was extremely difficult. Drug addiction, whether legitimate or not, is a bad thing and puts a real strain on anyone's heart. Both the addiction and the withdrawal was dangerous for me, but the doctors watched me closely and I did ok. At the same time I was detoxing, I was "drained." I lost 5 pounds in just a few hours from fluid loss. Unfortunately, it lasted only a couple of weeks. Now I am in failure again and my regular diuretics are not adequate for the job. I now take Zaroxolyn as a diuretic booster. Does anyone else take it? I would appreciate any information you have on it and what your experience has been. I promise not to be such a stranger from now on. Ruthie A. rlaba@mindspring.com


Ruthie A's November 25 reply to Pete P's November 24, 1999 - Hi, I have had to think and rethink the issues of medication and such, too. With diastolic failure such as I have, the heart does not know how to rest. If I decided not to take my meds so that I would not experience some of the side effects or so that I would think more clearly, my heart would go so out of control that I would have a heart attack or stroke or both, and possibly die within a short time. I have chosen to stick around for awhile and live with the uncomfortable and sometimes frustrating side effects of my various medications. I also have been asked many times if I would eventually get a transplant. I have chosen not to take that route, not because I am afraid of the surgery. Rather, I have a bunch of allergies and am very sensitive to many of the side effects of a lot of meds. I do not think my quality of life would be improved with a transplant because of the medication reactions. In other words, I have chosen quality of life over quantity of life.
     But I do have an open mind and if technology changes enough, I will rethink my position. All of this to say that none of us are God, and none of us has any control over when and if we die. We do have some control over how we live our lives, though. The choice is ours and we need to consider all sides of the question when making our choice. It takes time, thought, prayer, and conversation with those we love before we are ready to make such important decisions. Then we, and we alone, are responsible for those decisions. It is not fair to put the blame or responsibility on someone else. Does my rambling make sense? Like Jon, I would be interested in what the rest of you think. rlaba@mindspring.com


Ted's November 25 reply to Jon's November 24, 1999 - Hi, I take about 16 pills a day and there are times that would really love not to take them because it is a pain in the rear. I feel that I am eating breakfast and dinner every time. I think to myself what would happen and what would happen to my family if I did quit taking them, and sure enough, I take the pills. Once in awhile I do forget to take them and I can tell when I do, because my body tells me so. So as Jon said, don't make the choice now. Wait and see what your heart and mind tell you to do. goldwing10@home.com


Cindy M's November 27 reply to Siming's November 24, 1999 - Dear Siming, In lisiting my heart meds, I forgot one. I had great difficulty with Coreg, with my fatigue increasing dramatically and more serious breathing difficulty that went on and did not diminish over time. Therefore my doctors and I agreed to try another drug which is similar chemically to Coreg. It is called Metoprolol. The brand name of mine is Toprol-XL. The goal is to go up to 200mg daily. After 2 weeks, I'm at 25mg daily, with no side effects. Wish me luck! Cindy M. cleighmc@aol.com


Linda O's November 27 reply to Ruthie A's November 25, 1999 - Hi Ruthie, Welcome back. We will be looking forward to your progression reports. Are you settled in your new location and have a new cardiologist taking care of you? Your plate has certainly been full. I am a bad back sufferer and I think the magic word for back patients is patience. Good luck to you and to your husband also. Hang in there. Linda O, age 60, EF 24. norvalo@clarinda.heartland.net


Lisa H, November 27, 1999 - Hi everyone, I have been offline for 2 weeks due to buying a new home. I just wanted to ask for any prayers y'all can send up Tuesday, the 30th. Since my cardioversion has kept me in regular rhythm, I need a new pacemaker with 2 leads. I only have one now. Just this simple thing makes me scared. The first one turned out all right so I'm sure this one will too, but I still don't like being hospitalized. See ya, Lisa. wthall53@aol.com


Renee P, November 27, 1999 - Hi, This is just to let you know I am still around. I had computer problems and just now am back online. I was diagnosed 12/96 with idiopathic dilated cardiomyopathy and congestive heart failure with an EF of 15% at that time. I am now taking the usual meds and have decreased my heart size and increased my EF to 40. I also feel like I felt when I was at EF of 20. My doctor told me that the numbers don't mean much with all the meds that I am taking; it's me who knows how well I am. I have my good days and bad. I overdo on the good and suffer on the bad ones. Our daughter wants to go to college and just looking at the prices, my health has suffered from the stress of worrying about where the money will come from, but she will go, somehow. We are sending in every scholorship that we can. My goal is to now see her in college. I will be around to see that, God willing. Renee P, EF 40, age 43. heartdwn@nnewnorth.net


Bobbi Z, November 28, 1999 - Hi, It's been awhile since I posted but I have been a faithful reader. For those experiencing RLS, my husband has been prescibed 0.25mg Mirapex twice a day. This is working when Sinemet didn't. I am a bookkeeper at a pharmacy so I don't know about a lot of medications, but I can ask patients how the medication is working for them. One patient stated that Mirapex worked excellent at first then stopped working for awhile and she would change to Sinemet, then change back to Mirapex. If it allows for even one night of sleep, I think it would be worth it. Also, I'd like to add that the doctor did not bring this medication up. It was found through my Internet research. bobbi@norcalis.net


Cindy M, November 28, 1999 - Hi all, I think I unwittingly caused some confusion when I mentioned here a few days ago that I'd been approved for Social Security Disability and that I can still work part-time and earn up to an average of $700 per month before my benefits will be affected. This is called the substantial gainful activity level.To read about this information yourself, please see this post and go to the Url there. I hope this helps. Cindy M. cleighmc@aol.com


Jan S, November 28, 1999 - Hi, I joined this support group about 2 weeks ago. I am really impressed by the great support and dialogue and thought provoking answers on medications and personal choices. I went to my cardiologist this past Wednesday and mentioned this group. I have DCM and a lot of other problems but have never been told I have CHF. So I asked and he said, "Yes." I will be changing some meds to some kind of ACE inhibitor and the samples he gave me for the initial dose changes are in a paper sack. We agreed I could wait until after I return from a trip to see my mother and daughter and 2 grandchildren. I've decided not to worry about it until I get back. I also agree that we have to learn our own pace, though as a former "workaholic" now on SSD for 6 months, it has been quite a change! I also appreciated Jon's referral to the SSD Web site and the person that answered the $700 change that happened in July of 1999. Since I started in March, I thought it was $500 and though I haven't worked since March I just might be able to substitute at my old job on infrequent occasions in the new millenium as my surgeries and medications have really helped me feel better. God bless you all, Jan S. Geschuppja@aol.com
 
Jon's Note: Be sure to actually read the Site Index to find all kinds of pertinent info


Phyllis A's November 28 reply to Ruthie A's November 25, 1999 - Hi to all my friends, I'm glad to be back online. My dad is doing well and is taking rehab now. To Ruthie, I was taking zaroxolyn also back in May. I was retaining way too much fluid and started having severe shortness of breath. My docs put me on it and I started to lose the water. They didn't tell me to increase my potassium and I lost 15 pounds in a week. I felt much better until May 21- my fifth wedding anniversary - hubby and I were out for dinner and I just didn't feel right. I started getting headaches and lightheaded, a very sick feeling. He took me to the hospital and I was diagnosed with dehydration, and potassium and magnesium depletion. I was there for 4 days, so please be sure you take enough potassium. phylcasurv@msn.com


Siming's November 28 reply to Cindy M's November 27, 1999 - Dear Cindy, Thank you for sharing your medication information. I started Coreg at 3.125mg twice a day two weeks ago and haven't had any bad side effects. I hope you have a better reaction to Toprol-XL this time. Best wishes. Siming. sli203@nwu.edu


Thelma C, November 28, 1999 - Hi, I just wanted to say thanks to those who responded to my first post on 11/22. You are all very welcoming. I'm still not sure what will happen with my work vs disability issue, but I'm sure I will know a lot more when I have my 4 month follow-up tests (echo and stress test) on December 8. Also, when I was diagnosed with DCM, I was found to have severe obstructive sleep apnea. Is anyone familiar with studies that link CHF and sleep apnea? I'm just curious because at the sleep center where I was tested, they had done some trials with placing some patients who had sleep apnea and were waiting for transplant on the nasal CPAP machine and showed that heart function was improved. This may be old news to everyone, but I'm just curious if anyone has had experience with using the nasal CPAP machine at night and indeed their LV function had improved significantly. I am religiously using this device in hopes that this will be the case. Thelma. Tcull@prodigy.net
 
Jon's Note: See this article and then head for Medline search, available throught the Links page


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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