8 Years and Counting

It seemed like it was going to be just another day.  I went to work, albiet a little later than everyone else, and arrived at my office.  The next day was the state writing test, so the other counselors were busy in preparation for that.  I started my computer and checked my emails.  Then, my cell phone rang and the caller ID showed the transplant clinic.

Judy, one of the nurses, told me that there was a possibility of a heart in OKC, but they needed me to come in and have some blood evaluated to make sure my mysterious antigen issue would not cause rejection problems.  If it did, then the heart would have to go to someone else.  The transplant clinic was underway and they did not want any of the other transplant patients to know what was going on.  This was for the privacy of my family and myself as they didn't want previous transplant patients hanging around the hospital waiting for the outcome.

I had set up this elaborate plan for when the call came to get me to the hospital, but this was the day it wouldn't work.  Amy was at a principal's meeting, Lisa and Melenda were teaching class (Melenda was also Teacher of the Year and had that event to attend later that night), Dawn was the only administrator in our building because one was at a band conference and the other was at the same meeting as Amy, Susan was on her way to Arkansas, my fellow counselors were busy preparing for the test, and Robert was supposed to be busy with something at work.  We had always been advised to have someone drive us to the hospital, so I tried Robert, who managed to get away and meet me at my house and drive me to the hospital.  Phone calls were made to my parents and Susan, who turned around and headed back.

Robert got me to the hospital where they drew blood after they snuck me into the transplant clinic.  Before my parents could arrive to Tulsa from Chouteau, they decided to go ahead and get me in CICU and start preparing for the transplant.  Very little information was available to us on the donor, the only thing they would say was that the donor was an organ donor and that multiple teams were being flown in to harvest donations....and that the donor was fairly young.  Family and friends, co-workers, and others came to the hospital to wait with us....and wait....and wait.  Chuck Stophel, a transplant patient himself from my church, found out what was going on and stayed around to offer support and comedy relief.

Of course, nothing could go easily so because of weather issues the teams were delayed in arriving.  We were told about 10 pm that it would happen early the next morning and that they would either Lifeflight the heart to Tulsa or make the trip by ambulance.  Then Tulsa started getting the weather and finally about 1am they sent the surgeon by ambulance to OKC to harvest the heart.

Early the next morning, everyone began to gather back to my room then suddenly the pace of the nurses began to pick up.  All of the sudden they said it was time, gave me a shot, and began to take me to the operating room.  The CICU nurses and the operation room nurse got into it over where family and friends were to wait....all I could think of was "I don't care about them...get me to the OR!".

They always told me that if I woke up in the same room the transplant went through.  I'd already been through the disappointment of a trial run, and frankly I wasn't sure how I would handle it again.  As soon as the ambulance was five minutes out, the surgeon with me began the process of putting me on the heart/lung machine.  They tell me approximately an hour later the surgery was complete.  I remember waking up once that day and realizing I was in the same room, but I don't remember anything else.  My family tells me that they talked to me and I would open my eyes at them.  My dad made the remark to friends that he knew I was going to be fine because my blue eyes were shining like they did before I got sick.

As this 8 year anniversary comes up, I have to remember Tiffany Mashore Fleehart who lost her life at age 20 to give me a second chance at mine.  I have to thank all the doctors and nurses who gave me such excellent care not only during the transplant but the multiple tests that I have undergone since, and will undergo again tomorrow.  I also have to thank my family and friends who did everything they could to keep me positive and help me prepare for a new life or the end of my old one, whichever it turned out to be.  I also have to thank the hundreds of people in area churches who placed me on their prayer lists.

I've been very fortunate to not have any issues since the transplant until this year.  Recently, my kidney function has been acting up so they changed my anti-rejection medication to something I was on right after the transplant.  The problem with anti-rejection drugs is that they have some serious side effects, but I can't afford to lose any other major organs either.  So, not only do I get my 11th heart cath tomorrow but also get to have somewhere around my 25th heart biopsy.  Hopefully, both will show no problems and maybe, just maybe, I can get by with only one more biopsy in a couple of months.

But, even with the pain, expense, and time involved in all of this it is better than the alternative.  For in the last 8 years I've seen my parents celebrate their 50th anniversary, had the honor of speaking at two of my relatives services, watched my friend's children continue to grow up, and maybe help a child or two out at school.  I call this "my bonus time"....and it has been a bonus.

Thank you to all of you who helped along the way.  You have my eternal gratitude!

Bump in the Road

It was time for my usual 3 month blood work check, and wouldn't you know, I spent a couple of days fearing I had the flu prior to the tests.  Luckily enough, it wasn't the flu but I couldn't figure out what was causing so much stomach pain.  It was so bad that if I hadn't had gall bladder surgery in October I would have sworn I was having an attack.  So I wasn't that surprised when some things in the blood work was off.  But I was surprised to receive a call from the cardio office asking to set up an appointment.

It seems that my creatin level had nearly doubled since October, which is a little alarming for transplant patients.  The anti-rejection drugs we have to take have many serious side effects and we have to monitor kidney and liver levels closely.  My liver enzymes had been up before the surgery and while they're still a little above where they would like them to be, they had dropped since October.  My blood sugar had dropped quite a bit and everything else was in good shape, but the kidneys were concerning.

I went in to talk with Dr. T today.  We decided to drop the cyclosporine and go back to taking Cellcept, an anti-rejection drug that I first came home with.  I will also have an xray and kidney ultrasound to check to see if I might have had kidney stones when I was having all the pain.  If nothing shows up to significant with those tests, then I'll go ahead and have the biopsy and annual heart cath at the same time.  I will have to have at least 2 or 3 biopsies in the next couple of months.  I'll also have more blood work ran at the end of the week.

Not thrilled about that at all as they are painful and expensive and it means more time away from work.  But I don't really have much choice in the matter.  The alternative is not great. 

With prayers and support from family and friends, on I will march.