My Journey to Transplant

After reading Jacqueline's post this morning, I've decided to share with you one of the most amazing experiences of my life ~ my journey to transplant, which took place on March 3, 2005 when I received my 2nd chance at life by miraculously receiving a donor heart.  Because of the story, this will be a long post!

My personal journey to that day took almost 9 years and along the way I met so many caring and compassionate individuals.

In September 1996, I was diagnosed with Dilated Cardiomyopathy as a result of viral myocarditis which had been caused by a very slight 2-day sore throat between Christmas and New Year's 1995.

This viral infection didn't cause that much of a sore throat but just when I thought it had gone, it was instead attacking the heart muscle, destroying it just the way multiple heart attacks would have.

By February 1996, I had developed a constant dry hacking cough. I became "winded" just delivering a few of my sons' newspapers while they were playing afterschool sports. I was only 39 years old at the time and never thought of anything major being wrong at that point.

Blood tests at that point revealed nothing untoward and my heart was not yet enlarged enough to show up as such on the chest x-ray.

From May to July 1996, the cough seemed to decrease a little. By mid August we stayed with my husband's folks at their cottage for a couple of days and I had never "minded" the heat so much in my life. I could hardly even walk back the few hundred yards from the beach to the cottage.

By the end of that summer, I got short of breath just sitting on a couch reading a book! My ankles were so swollen that when walking downstairs, they felt 'spongy'.  Something was definitely wrong, but the extent of the problem was something I could never have imagined!.

I made an appointment with our family doctor and various tests were performed, all of which indicated that I was suffering from DILATED CARDIOMYOPATHY which in turn had caused me to suffer from symptoms of advanced CONGESTIVE HEART FAILURE [aka CHF].

A subsequent cardiac catheterization showing clear arteries, confirmed that this DCM was caused by a simple virus!! I was place on a barrage of very helpful medications specifically for CHF and these were able to keep most of the symptoms at bay for several years.

My 1st major hospitalization was a direct result of the CHF and required that I be in hospital for 6 weeks in Jan-Feb 2002.

In October 2003, a gangrenous appendix which had caused peritonitis, required emergency surgery. My husband was told to be prepared because my chances of surviving weren't good.

In the spring of 2004, I was admitted to our local hospital for a few weeks and when somewhat stable, was transferred by ambulance to the city hospital about 1 hour away to try to get rid of the 25 pounds or so of excess fluid in my body tissue. Once that goal was reached about 6 weeks later, I returned home feeling so much better than I had in a long time.

That feeling of wellness lasted only about 1 month at which time I had gained back ALL the fluid even tough I was following a 'super low', low sodium regime. Once again I was short of breath just by walking a few feet from my bedroom to the bathroom. My appetite was almost nil and the specialists were worried about my various electrolyte levels which were dangerously erratic.

My regular appointment with our local Heart Function Clinic led to my being directly admitted to the Cardiac unit where once again over several weeks, excess fluid was removed with large doses of Lasix, a diuretic.

Just when I thought I was going to be released once again, my husband and I received word that it was best to stay longer and begin the assessment for a future heart transplant.

Various tests were performed; multiple doctors of various specialties interviewed me and examined me; various immunizations were received . . . I was told that I would be given a beeper so that I could be reached anywhere, anytime.

Suddenly though, things took a turn for the worse and just days before qualifying for "the official waiting list", I was told that unless something drastic was done, I would no longer even be a transplant candidate because of worsening major kidney failure.   

My husband was forewarned by the medical staff, that unless something was done immediately, I wouldn't last but a few days.

A surgeon who was specially trained in Left Ventricular Assist Devices was sent in to my hospital room to explain all about these "mechanical heart pumps" and how they work.

I was overwhelmed and amazed and I think at that point, so weak and tired and so ready to leave this scene of time if it was the Lord's will, that I told him, YES! I would let them implant one.

The day after Remembrance Day 2004, I received an LVAD, an amazing mechanical heart pump that provided me with what is called a 'bridge to transplant'. I felt like a whole new person almost immediately.

During the surgery and immediately afterward, my husband was once again told to be prepared because they couldn't be sure that I would make it.

Many hurdles popped up during those 4 months of waiting and living in a private room in the cardio-vascular unit, but the Lord was over all, helping the brilliant medical team come up with solutions [sometimes a little out of the ordinary], until the day came when I was told that a miracle had taken place and I had matched with a donor heart!

The two surgeons performing my heart transplant surgery were the same ones who had performed the surgery to implant my LVAD four months previously so I was in familiar and caring hands.

Needless to say, I do not remember anything about the surgery but I have been told many times by my husband and the doctors how delicate and how long it was! Generally speaking, heart transplant surgery lasts from 6-12 hours. I was in surgery for almost 24 hours and even then, doctors could not close my chest because of bleeding and swelling.

As a result of those complications, I was left sedated for a total of about 90 hours with a special gauze covering my open chest, while they waited for the swelling to decrease. My husband was once again told that he should be prepared for the possibility that I wouldn't survive.

Almost 3 days after the surgery was begun, they were finally able to close my chest and told my husband that the next several days were the most critical, especially after the severity of the whole procedure.

Well, I survived and thrived and by early April was asked by the city newspaper to do an interview with one of my surgeons. I felt fabulous and could hardly wait to go home.

About a week after that, I felt sharp pains in my abdomen that no one on the cardiac unit could diagnose. Because of recurring kidney stone problems during the last few years of my heart problems, a urology resident was called in to see if that was the problem, but it wasn't.

To make a long story short, I had to have emergency surgery to remove an obstruction of the bowel which turned out to be caused by the old adhesions from my 2003 abdominal surgery!

As you can probably already guess, my dear husband was told yet again that the prognosis did not look good and to be prepared for the worst.  

At that time we only 2 of our children were still at home, the youngest almost 16, and both were in denial and never really understood just how serious everything was.

Well, once again, I survived. Obviously, it was not my time to go home to glory and as I look back over those days and weeks, I am amazed and awed by the grace that the Lord poured into my husband's heart and soul as he prepared not once, not twice, but several times for my death and that He poured into me as He strengthened me through the entire journey, which included those almost 7 months of living in the cardio-vascular ward waiting ... far from my husband, teenage children and all our loved ones but never alone!  I am reminded of His wondrous promise:

"... My grace is sufficient for thee: 
for my strength is made perfect in weakness."

I Corinthians 12:9

The photo on the middle LEFT above shows me holding the part of the LVAD that came from my heart to the outside of my body on the left side of my abdomen. It looked somewhat like a transparent, very large yo-yo and you could see the blood actually being pumped. That machine took over the pumping of my almost non-functioning Left Ventricle!

May I never take being alive for granted!  May we all find small blessings in the miracle and magic of ordinary, everyday life and realize that in a single moment of time, they could all end.