Somebody, probably many somebodies, have said that life is
like a roller coaster. We here at the
Rampton house successfully fall in line with this thought, most of the time by
no choice of ours. When we last left you
in November I was in the hospital in the middle
of a series of treatments to fight organ rejection that I had been experiencing
since about three months post-transplant.
Rejection is pretty common with organ transplant recipients. I had never experienced it with my first
transplant, but then the two transplant experiences themselves were almost as
different as night and day. Since
rejection is fairly common, and most healthy bodies don’t want a new organ around
the house, treatment is usually fairly simple and effective. However, since I am THE atypical patient, the
treatments have not been as effective as my doctors and Megan and I would have
liked. My liver function blood tests
that I have checked three times weekly have showed signs of improvement
throughout the various treatments, (treatments consisting primarily of different
steroids and medications I’ve had infused while staying at the hospital off and
on for several weeks) but remain high (which is bad).
The kicker came about a month ago when I woke up on a Monday
morning. I was in an incredible amount
of pain down the right side of my abdomen, and could tell I had some sort of
infection in my right ear as well. The
days leading up to that morning had been fairly normal. I’d felt fine throughout the days with some
fatigue in the late afternoon and evening.
So I was not really prepared for the shock of pain that hit me that
morning. Barely able to get out of bed
and walk, I got up and Megan was already on the phone with my transplant coordinator. She told us to head down to clinic right away
to be checked out. After a quick
physical exam my doctor who has kind of taken the reins of my situation, Dr.
Charlton, had me admitted to the hospital for further tests and immediate
treatment. Next thing I knew I was
plugged in to every antibiotic you’ve ever heard of and maybe some you’ve never
heard of, trying to fight what Dr. Charlton was sure was an infection, but what
kind we just didn’t know quite yet.
For the next two days I basically slept and scared Megan and
some of my nurses because I was so far gone.
There are things that I did that I have no recollection of. I could tell you more about all of this, but
I’ll spare you unsettling details. (Just
kidding, nothing unsettling, just funny really)
It was NOT funny at the time, however, but Megan and I laugh about it
now. Crazy stuff can happen when you’re
body is receiving new medications.
Ultimately we found that I had Pneumonia and some various
fungi that had developed as a result of the Pneumonia. So my super low immune system showed its true
colors despite our consistent efforts to protect it. Over the next week and a half in the hospital
much of the infections and the pneumonia had come under control enough for me
to continue treatment at home. Since
then things have been fairly quiet apart from two additional weeklong stays in the
hospital following another small flare up in my sinuses with some fevers that
they wanted to watch and some intense edema. When you’re immune
system is weakened as much as mine has been (and showed with the pneumonia) the
doctors take no chances, and I can appreciate that. I don’t like going to the hospital, but at
least there are amazing people there and my docs can keep close tabs on me.
So what does all this mean?
What’s the end game now that we’ve found that none of the treatments
have worked has they should have, and have really only weakened my immune
system to the point where I’m susceptible to basically any infection out there,
many of which would pass through a healthy person’s immune system with no more
than a cough? Megan, my doctors and I
have known for a little while now that my body just doesn’t want this liver
for which we'd waited so long and fought so hard before receiving back in May
of last year. As each treatment came up fruitless, we began running out of options. There was always something more that we could try, but how far do you push the
body’s limits before you make the ultimate decision that it can’t and shouldn’t
take much more of it.
With all that said, I have been listed again for
liver transplant.
Hopefully the third time’s the charm, right?! This news came to Megan and I not too
shockingly, as I said earlier. We began
to put the pieces together with each passing treatment that proved ineffective. So when we finally made the connection with
Dr. Charlton, it was almost like old news.
It doesn’t really make the pill any easier to swallow by any means. We are just anxious and ready to move forward. The fact that I received the call early last week that my previously-scheduled Clinic appointment would run a
bit longer than anticipated due to the fact that I’d be filling out all the
paperwork and other fun things you get to do to be listed was a blessing in and
of itself. We have known that I’d
need to be eventually listed, but thought that we’d have to wait a couple of
months at least to reach this point in order to give my body more time to clear
out all remaining infections, and that currently I was too sick to be listed. But Dr. Charlton and his staff have agreed
that the time to move is now, so since I need to be listed eventually anyway I
say, “Sign me up Scooter!”
Emotionally and mentally, Megan and I are taking this pretty
well, I think. When it started to become
apparent that a third transplant was the only option, Dr. Charlton put our
minds at ease, assuring us that things shouldn’t be as bad as they were last
time. While we know that no one can
guarantee this 100%, we trust him and everyone at IMC. My liver numbers that determine my MELD
score, or where I will be on the transplant list are already pretty high. My skin is its beautiful sunset orange hue
again, and some of the other criteria are elevated as well. So we’re back in the boat of wanting to get
sick again. The sicker the better,
because the sicker you are, the higher you are on the list. The higher your MELD score, the sicker you
are, the higher you are, the closer you are to getting another shot at living a
healthy life, which we know will come.
I got a little bit of good use out of this second liver, but
it sure didn’t want me to have any more than that. I have still been pretty mobile, and have had
some fun with Megan, Miles, and friends and family. I’ve been so immune-suppressed recently that
I haven’t been able to see anybody, really.
And the same quarantine-type lifestyle will continue to apply for
awhile.
My primary concern personally with a third transplant (and I can just see you all rolling your eyes while saying, “Alec that’s ridiculous!”) is the fear of sounding like we’re
crying wolf or a broken record as we ask for your continued support and prayers
and pass through what is bound to be a very trying time for our family. We have been so amazingly blessed by the love
of others it makes me wonder what I have done to deserve such an
abundance. Miles, I understand. He smiles at you and immediately you find
yourself running to find the nearest cookie just so you can give it to
him. And then there’s Megan, who does
nothing but make your day and life better with the light and life she brings
everyday. I am in the best of company,
and won’t ever take it for granted.
Click Here
Of course, an incredible way to help not only our cause as we await a third liver, but the causes of so many others is to register to become and organ donor if you have not already done so. It will be a complex search to find the right liver for me, and wouldn't have to be so difficult a search if there were simply more registered organ donors. Organ donation saves lives.
One goal we have always focused on as we've gone through our trials is to never stop living our lives. My health may prohibit certain pursuits, but we are dedicated to not allowing liver failure to dictate how we live our lives, and how we plan to move on with our lives and our family. We want to have more children, and we want to go to the park and watch our kids learn from when they fall off their bike. We won't allow my health problems to stop us from living this life we have planned, and therefore we consider your love and support, both spiritual and temporal, to be blessings from the Lord that we will carry with us forever.
Our prayers are with you!
ReplyDelete