Sunday, March 22, 2015

Moving Forward

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.

We continue to benefit from the many donations made to our family that have been invaluable in helping to cover the medical bills which seem to find our mailbox everyday.  We cannot express our appreciation enough for this help.  Many have asked us how they can help or serve us.  We have loved the meals and goodies that have been provided. Miles has been extremely spoiled by love, hugs, sugar and fun. We thank you for that. What continues to bring peace of mind are the financial contributions that we have received that not only have helped our medical needs but also our day-to-day financial responsibilities, as I have been unable to work for nearly two years now.  Your help is and will be a blessing beyond measure.   To donate money, you can click on the button on the right side of our blog that says, "Donate to the Rampton Family."  Or check out the "Go Fund Me" link on the top-right side of our blog, or on the link below if you would like.  We are incredibly blessed. We have all of you to thank for that. 

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. 

Many ask how we make it through our trials with happy, positive attitudes and smiling faces.  I can assure you that it’s not always roses, Cokes and chocolate donuts inside the walls of the Rampton home.  We have tough times, but whoever said “Tough times don’t last, tough people do” was right, and we have been toughened and molded by our trials, and made it out of each of these trials better people, because we have all of you to lean on, and we have each other to cry to, to smile with and rely on as we go through it all.  So we will continue to move forward everyday, and will never be defined by a trial, but define ourselves by how we deal with those trials.