Joyce Walters Jtravl@aol.com St. Louis, Missouri age 52 Married to Bob for 34 years 3 children: Dan - age 32 Steve - age 30 Becky - age 24 and 4 grandsons

Both our sons are married and Becky is engaged to be married October 24, 1998. Our grandsons are 8 year old Shane, 6 year old Evan, 3 year old Nicholas and 11 month old Brendan.

My History

I was for the most part a stay at home mom. It was like that in the 60s. In the beginning of our marriage, Bob worked for my father in the family business. After many hard years, Bob decided to leave the business and start one of his own; That was 24 years ago. Our life was hard during those building years. Bob was rarely home and the children needed some kind of stablity in their home lives, so I began the volunteer life. That roughly lasted for about 11 years; you name it and I have most likely done it. When both boys were in high school, I decided to end the volunteer activities, which had taken over my home and most of my time. I ventured back into the work force. I took a part time job in a major department store and worked my way to assistant department manager.
     All good things do come to an end. Our business had moved into easier times and Bob wanted me available to entertain and travel with him, so I became the stay at home wife and mother again. After the boys graduated from college, we began traveling.

My CHF

I was diagnosed with CHF in July of 1996, one week before my 51st birthday. I had always heard that turning 50 was tough but I never expected this. After reading books and gathering all the information I could about dilated cadiomyopathy, it became painfully clear that I had had all the classic symtoms for many, many years. I had just slowly progressed from one stage right into another.
     Most of the things that where happening to me, I assumed were caused by my being over weight, underexercised, a smoker and over 40. I had the nagging cough at night and the ankles and hands swelling. I was up going to the bathroom 6 to 8 times a night. I often wheezed and had trouble getting my breath. I had the pounding in my chest and the rapid beating. I was often lightheaded and felt like I would pass out. Then there was the bronchitis. I always had a cold, a sore throat or an ear infection. I was usually told it was a side effect of some virus I had caught and because I was a smoker, I always took longer to recover. By July of 1996, I was totally exhausted.
      The last week in April, we had our "Annual Girls Trip," this time to Capo San Lucus. I came home to a lonely and bored hubby who had my 3 days at home completely filled. On the fourth day, I left for Rome to begin a 14 day Black Sea Cruise with a post-tour of 3 days in Athens. I almost died climbing a couple of mountains of rubble to view historial sites but that's another story! I returned from this trip sick again, battling bronchitis but it was the end of May and we were hosting an outside retirement party for an employee. It was so hot and humid that spring that I couldn't get my breath when I went outside. I struggled with the shopping, cleaning and planting around the pool to get everything picture perfect for the party. I actually collapsed more than once outside but didn't tell anyone. Really, I wasn't sure what I would tell a doctor. I just knew the answer would be that I was in menapause, over 50 and in need of bladder repairs. I was also on the phen-fen program and had lost 30 pounds. At the time we started the phen-fen, it wasn't available here, so we got ours in Mexico. Now, how do you tell a doc that tidbit?
     Then I started waking up at night struggling for every breath. I was unable to sleep laying down or even reclining in a chair. As the days rolled by, it got more difficult for me to walk from one room to another. I had pretty much quit eating because it always made me feel sick. One morning, Bob took one look at me ( I guess I didn't look so very good) and said, "You are going to the doctor today." I called, got an appointment and dragged myself to the office. Bob stayed at home with the grandsons we were taking care of. My regular doc was on vacation, so I saw his sub. A really nice man but I couldn't understand him. He did a very thorough check up. I could tell by his expressions and the exam, that he was very concerned but you know how the stand-in docs can be: he ordered a lot of tests, which where done in the office and ordered a stress test for the following week, when my doc returned to work. He gave me a prescription for high blood pressure medicine and I left after the tests.
     He failed to tell me to stick around for the results. When I arrived home, Bob is semi-white, saying this doc had called and had to talk to me immediately about a problem with my heart and it's serious! You know, I really didn't have the energy for all this but I called him back. An irregularity in the EKG showed something wrong with the heart. I was instructed to cancel the stress test because he was scheduling an echo for the next day and an appointment with this cardiologist the day after the echo. He told me I was on "hospital alert" - any changes and I was to go there ASAP. The rest is the same story. I had dilated cardiomyopathy and was in mild heart failure. My EF was 25% and my heart was enlarged. They did the heart catheterization about 3 weeks later, after I dried out enough to lie flat. My arteries were clean, so the probable cause was viral.
     I was given the hope that I could be in that group who recover within the first six months. Six months later, another echo and I'm the same. I get a Vo2 test. Now, I'm told that my heart is damaged and my body doesn't handle the oxygen well. The plan is to get me stablized on medicines and hope for a relatively good life. I have to change my life style or I will be in CHF again. I was told that the disease was DCM and when that disease advances enough, one experiences CHF symtoms.
     In December of 1997, I had another echo. This time the results were alarming to me. My EF is now 18% and the heart has enlarged a little more. I am experiencing more fatigue, even though I have stopped doing so many things. My cardiologist says I'm still doing too much and that the echo didn't surprise him. We have talked heart transplant but all that was put on hold because I was still smoking. The transplant team here at Washington University Hospital (Barnes) will not even begin the sessions until I have been a non-smoker for 6 months.

Computer Changes My Life

I have to say that my life changed when I got this computer and went online. That was in March of 1997. I spent endless hours researching all I could find about my disease. I was and am on AOL and they have a cardiomyopathy board. That's where I met Lee and took her suggestion to come to Jon's Place. I had no idea it was in its first months. I only knew that I had finally found my home, my refuge. Here was the information I had been looking for. The bonus was the personal experences everyone was sharing. Many issues doctors blow off but those issues affect our lives daily. Here we could say what we feel without guarding every word. This forum has truly made a big difference in my life and I thank God and all of you, for making this so good and possible. I truly feel blessed.

My Meds

So, Now What?

I've learned to take life one day at a time, to accept good days and bad ones. I have given up almost all of my old chores and responsibilities. I have changed my ideas about what retirement will be. My family still has a problem with the death issue but I have, for the most part, recovered from the initial shock of it all and am at peace. I still, from time to time, backslide into bouts of depression and the anger and denial thing but all in all, I think I have accepted my lot in life. I wasn't happy with the cards dealt me but I am trying to make the game good. I am a religously metaphysical person, so just being alive to experience and share love fills my life with purpose.

A Thought

True love is more dangerous than most people are willing to admit. If experiencing love meant going into all the dark chambers of the soul, none of us would risk it. On the other hand, to reach out, to love another person, involves opening up your whole being. Thank you all for taking that risk.

My last echo, in December of 1999 showed that my heart had returned to normal size and my EF had increased to 35%. I have been doing much better but still have heart disease limits. It seems that I have been living this adjusted life style for so long that often the limits really seem more like the "normal."

  Joyce -- February 28, 1998

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. No one here is a doctor. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. This web site and all its pages copyright © 1997, 1998, 1999, 2000, 2001, 2002 Jon C.