Update from JQ

[Guest guest]

October 25, 2006

As many of

you may know, I was hospitalized several weeks ago due to some severe liver

pain accompanied by fever. When Luke and I arrived at the ER, I was

informed that my blood counts and hydration counts were dangerously low.

I was immediately admitted to the transplant floor () at Baylor

where they began one emergency test after another trying to discover the source

of the apparent bleed. As some of you (unfortunately) know first

hand, tests such as colonoscopies, EGDs, CTs, repeated blood work, placement of

central lines, blood and hydration infusions, etc. can be no

fun....especially after having gone so long being a " normal Mommy "

taking care of my sweet family at home. After 10 days of admission, I had

had enough and begged my doctors to let me go home. With much trepidation

he did, only to have me and Luke come back to his office ASAP, the following

Monday to discuss biopsy reports.

The news

was not the worst ever, but it wasn't the greatest either.

So...back

to the doctor's appointment. Dr. Hamilton told us that my colon biopsies

came back with severe and chronic Ulcerative Colitis in the right side of my

colon. He said that this is what's causing the pain over there,

probably the cause of the blood loss ( when it was last checked, the

platelet count was 85,000 and it should be 440,000) and the reason why my temp

jumped up to 104 following my colonoscopy. He was also very worried because

my blood pressure was extremely high all throughout my hospitalization and

even while we were in his office. SO.. here's the game plan...I have been placed on 9 (yes, count

them) NINE sulfa drugs per day in addition to all of the rest of my meds.

We're also going to be trying a blood pressure medication because he said

that chronic high blood pressure, 2 liver transplants and the

medication that I must take daily to save my life is a recipe for kidney

failure, eventually leading to kidney transplant. If the 9 sulfa

drugs a day do not help, then we will go to steroids, but that

can damage the kidneys much faster than anything else. In other

words, this is a very serious situation because Ulcerative Colitis goes hand in

hand with PSC and shows that the PSC is moving aggressively.

Since my

latest diagnoses have caused increased chronic pain (that is still being

managed by my great doctors) and a new " reality " of the

presence of my illness. I cannot tell you enough how much it means to me to

know that all I have to do is to sit down and write a letter and within moments

prayers are being sent up for our sweet family and for whatever might be the

issue at the time. Each of you are angels to our

family and we love you with every bit of our hearts!!!

Barb in Texas