White Coats & High Hopes

White Coats & High Hopes

So, here I sit in one of the best hospitals in the country

(and likely the world) and what is the prevailing thought? 

 "Life is so disposable."        Or better yet... It is but a vapor.

 There are hundreds of people sitting here in the waiting room to get help for whatever ails them and the first stop is blood work.  Walk up to the counter, "Hilton Building, Desk C" and you are greeted by a smiling, cheerful face.  "Wow" I think to myself.  After all, it's 8am, I'm nervous because I don't know what lies before me, I'm probably patient number 473 this morning alone and this is a welcoming stop on my journey.  Perhaps this is just a really sweet lady!

Blood work done.  Onward to my next appointment.  As we tunnel our way through the underground walkways (aka "subways") toward the main lobby, I feel like I'm entering a beautiful hotel lobby with 40 foot ceilings, marble floors, beautiful art and a pleasant grand piano filling the air with lovely music.

 "Shall we just sit here, drink in the atmosphere and lose ourselves in the music?"  Ahh, no- we didn't travel close to a thousand miles for atmosphere!  I mean it could look like a sanitarium and it wouldn't matter if they did what I needed done!

Appointment after appointment, that lady from the "Hilton Building, Desk C" must have sent her sisters to take care of me because they were ALL so sweet and lovely.  I'm not joking, even the men were pleasant.  We must be on another planet!  Are we still in America?  And "Up North" for goodness sakes!  Everybody knows that "all Northerners are rude." (At least that's what our mamas told us)

No, no, we were in the right place but they must have one of those Wal-Mart kind of morning "pep rallies" before the doors open at 6am for patients, to get everyone motivated and happy. 

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With all of that being said, I hope I have set the atmosphere quite perfectly for you.  I ended up in "The" Liver Specialist's office by Wednesday.  The bulk of tests had been done and it was time for some serious observation.  We sat and talked with him as he sorted files, read records, asked questions and made notes.  He was a pleasant man, relaxed, calculated and very knowledgeable.  After examining me, it was time for us to ask questions.  We had many fears- my doctors at UVA helped us to understand how serious my condition was, no doubt so that we would handle it seriously and follow their treatment plan.  I had Stage 3 Liver Disease.  They wanted to, "save my liver" and avoid the need for a transplant.  Along with this, we had been studying up on this disease and knew allot of the "Ins and outs" from our reading.

So, what did he say?

He did confirm that I have both PBC (Primary Biliary Cirrhosis) and AIH (Autoimmune Hepatitis). 

They have ordered the actual tissue samples from my last two biopsies and will have them looked at by Mayo.  (He didn't see the point in taking another biopsy)  He believes that with a little different approach, as far as my medicine goes, we can get to the place that we can manage these diseases and the damage they are having on my liver. There are no dietary changes that will aid in managing the effects of this disease on my liver.  I don't need to worry about a transplant: 25 years ago PBC was the leading reason for a liver transplant but with the advancement of medicine and treatment options, it is rare for a PBC patient to need a transplant (even at Stage 4).

Long term, things look good for me.  I will still have the difficulty of day-to-day pain and fatigue from the disease. Over the next week, I have a series of appointments with the chronic pain clinic which will help me with managing my pain through medicine and lifestyle management. (like the physical therapy I am currently doing)

All in all, we are so encouraged!  We are truly rejoicing in The Lord and are THANKFUL for the LIFE He has given me.