Tuesday, August 17, 2010

What's goin' on now!?!

Hey guy and gals, I have been trying to write this update since last weeks blood tests, and have just decided to be honest without the fluff. Last week for the first time, they brought up the "R" word, which is common (and scary enough) for us transplant patients, but what I was mostly concerned about, was the thought that my Hepatitis C could be coming back strong (which the doctors have been telling me not to worry about that yet since day 1 post transplant... until yesterday) This weeks appointment, my levels had raised again slightly which began to raise a red flag, that maaaaaybe it is time to start worrying about it for me. Hepatitis C will always come back to invade the new liver post transplant, but one can only hope that it will cause little or no damage to this new gift, or at least take another 30 years or longer to destroy it completely. However, this is not always the case. Studies show that in some cases, HCV will come back with a vengeance and cause cirrhosis and liver failure with in 5 years post transplant. (That puts me at about 35 years old... River at 9) To which I was told by a doctor, "That is better then the 1 - 2 years we gave you prior to your transplant" (True, but so NOT what I wanted to hear.)
So tomorrow, I will have labs again, and will most likely be admitted for more tests, including a biopsy on Thursday. (which I am actually happy that they will be going through the neck artery, down to my liver to pull the sample - I may be weird, but it sounds less invasive to me) This will tell us if it is rejection or my Hepatitis C that is causing elevated counts. ~~I have no idea which one I'm supposed to be praying for... except that maybe it's just a fluke, and the counts will just start dropping again? But if not, something will need to be done.
The treatments for these two things are opposite of each other. For rejection, they will need to raise my anti-rejection medications, for HCV, they will need to try to lower the anti-rejection meds as much as possible to slow the progression of the Hep... however, they need to be careful, because lowering it to much will cause a rejection episode... it's all about balancing the necessary evil.
They are also trying to figure out why my Magnesium is still dropping so much. Supposedly it is normal for a few weeks after surgery... but not this far out. The main way Magnesium is lost, is through urine... so (it doesn't seem like a good idea to me, but I'll go with it) they want me to raise my salt intake... the theory being that I will retain water, not pee as much, and keep what magnesium I absorb in, instead of losing it to the fishies.) We'll see how that goes... but I'm not holding my breath on not needing an infusion anytime soon.
I am trying to control myself, trying to take it easy, which I messed up on today by picking up River to put him in his room... it was quick - I realized it as soon as I did it... but it did hurt, so I definitely need to still heal some. I also noticed that my main bald spot has gotten slightly bigger, but at least it is coming out a little slower then I originally thought, and a lot slower then it did when I was on the Peg-intron treatment (Those were serious clumps... and let me just add, when you are sick, losing hair and taking a shower, it is best to keep your puke bucket with you because you do NOT want to clean that mess out of your drain. blaahhh) Not that I have had to worry about that since my transplant... I haven't thrown up since the morning of my surgery!! So besides waiting for the outcome of tomorrow... everything is going pretty good!!

1 comment:

Anonymous said...

Stay positive and focussed on getting better!!!!