I was diagnosed with DCM in September 1996, age 39, as a result of a viral infection in my throat in December 1995! My most persistent sympton was a constant chronic cough. My resting heart rate hovered between 120 - 139 bpm. I got short of breath just sitting, reading a book. After one week on daily doses of 10mg Prinivil, 25mg Lanoxin and 25mg hydrochlorothyazide, my EF went up to 22% and my heart rate went down to about 119. I was taken off the Lanoxin at that point. I was able to do things again and I felt much better. Ed took over the vacuuming (blessings in disguise!).
In October 1996, I had a dual (in groin) catheterization, which showed clear arteries and because they could tell that the inflammation from the virus was gone, a biopsy wasn't needed. My EF had risen to 37% and my left ventricle wasn't AS dilated. Prinivil was increased to 20mg along with the 25mg diuretic and 325mg coated aspirin added. I went for another MUGA in February 1997 which showed my EF had risen to between 50-55% in an "eyeball assessment" (sounds very scientific, doesn't it?). Eyeball assessment also showed no abnormalities in the wall motion part of the study, whatever that means. All meds were left the same and my ECG showed my resting heart rate was 80-90 bpm and that I had a "right bundle branch block."
September 9, I went for a MUGA and an ECG. Right afterward, I had my appointment with my Doc who said I could now decrease my Prinivil from 20 to 10mg and stop taking the diuretic altogether! I didn't make the adjustments in meds until September 13, after his secretary read me my MUGA results over the phone. I guess I wanted something more concrete before I listened. I made the adjustments and felt no differences. My MUGA showed my EF is now 54% and that my left ventricle is somewhat dilated but no "significant" changes in the wall "motion" as compared to February's.
Because I have remained the same since February, I have now been told to stop all cardiac meds and have been medication-free since September 22! In 6 months, I will go for another MUGA to see what my EF is without meds. I must admit I was quite apprehensive at first, having been dependant on meds since September 1996 but haven't noticed anything significant as a result yet.
After being pronounced "cured" and being taken off all my meds, I noticed a bit of swelling from time to time in my ankles. Also, I noticed being unable to dash around like I had been doing while grocery shopping. Then, I noticed a pressure feeling in the middle of my chest and it continued even when I was doing nothing, so I went to the Emergency Room. My heart rate was back up to its worst case of 140 bpm! They put the oxygen mask on me, put a nitro cream patch on my chest, injected morphine, gravol, a beta-blocker, and lots of Lasix, as I gather I was "drowning." A chest x-ray showed my heart was enlarged again!
All the treatment improved things immensely until suddenly I grew quite dizzy. My BP dropped from a normal for me of 105/90 to 70/45. Off came the nitro patch, on went the oxygen mask, the bed was tilted down at the head and the saline IV was increased. In a while, all was back to normal.
The cardiologist I saw in our local hospital wondered why I had been taken off Prinivil in the first place. She said, with a "borderline-normal" EF of 54%, she would have left me on Prinivil. So today I begin with 10mg of Prinivil for a week and then increase to 20mg. I hate to take away a source of encouragement about people possibly being removed from all their meds but I guess I'm not cured. The cardiologist said that even though I might not get another infection in my heart, things like stress, fatigue or any illness could cause my heart to falter.
As of October, 1999: I had another MUGA a few months ago and my EF had stayed stable at 50% for over a year so my retiring cardiologist told me I only need come annually now unless something untoward happens. They added 0.125mg Lanoxin to my meds and now my bigeminies and arrhythmias seem to be gone. In addition to the Lanoxin, I'm still on 20mg of Prinivil, 325mg coated aspirin, 25mg of hydrochlorothyazide, 30mg CoQ10 and 0.15mg Synthroid.
I am working part-time as a circulation clerk in our local regional library. I am thankful for this time of stableness and cherish each day I'm still here to enjoy and share with my family and friends. The Lord has blessed me more than I could ever have imagined and more than I deserve!
When the diagnosis was made, it was such a shock! Coming to grips with death possibly earlier than I ever imagined, was made easier by the fact that (as Jennifer says) "I may not know the future, but I know Him that holds the future in His hands." There were good days and bad days and I hovered at times between smiles and tears in the early days. I began to appreciate each day as I was given it and I realize now that I've gotten this seemingly wonderful news, that I have even more of a responsibility because I'm being given more time here for a reason. This site has helped me immensely as everyone is able to share and "be real." I fully appreciate each one that's a part of it!
I read voraciously, listen to various types of music, sell Avon, e-mail a new found half-sister, given up for adoption before I was born, who has recently contacted my Mom, and surf the Net, realizing how much I used to take for granted and now appreciate and cherish. Every day is a gift.
Dallas -- September 27, 1997
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, 2003, 2004 Jon C.