Friday, August 26, 2011

Jumpin' the gun

The oversized cheeks are from the steroids  

It is just my opinion, and I am glad they are not doing nothing at all, but I do believe my docs are jumping the gun on some stuff here. Take my plasmapheresis, they still have not gotten the final test results on if I have this rare antibody that is fighting off my new liver, yet they sedated me and put in a central line (creating more scar tissue, which isn't good because eventually that vein will be to scarred to use) They completed one round of it on Monday and Tuesday; They then put it on hold, and today took the line out, but still have not received the final result... it should be in this Tuesday. I don't get it? If I do have the antibody the line will have to be put back in to restart the plasmapharesis. Of course I have looked up plasmapharesis and have really only found the procedure done on kidney transplant patients... it must be rare, very rare. hehehee. And just a suggestion, if they tell you that you don't need any meds besides the local numbing shot, I'd tell them they crazy... at least get a little something IV for pain, with something to relax you. It is going to be sore after. The nurses were laughing at me because every time I needed to move my head I would grab the top of my hair (like I'm holding a shrunken head) and maneuver it to where I wanted. Taking the line out on the other hand is not so bad, takes 'em a couple of seconds to get the stitches out and then they just pull it out... that feels weird though - not really painful, just weird.

Anywho, back to jumping the gun. Those aren't the only lab results that they have not received back before starting treatment. I have quite a bit of antibiotics flowing through my veins, most of them we haven't received results back on yet. Jeeze, I don't know why my liver counts keep going up... maybe all these extra procedures, sedation, and medications on my poor new lil liver? Maybe not, we'll see.

Now today they say my labs are about the same as they have been these last few days -- to high, and they are thinking that the hematoma may need to be taken out, but since it is in there like a bunch of grapes full of fluid, they cannot poke a bunch of holes to drain each one, so that means another surgery to clean it out. They say that it is most likely not the reason for my numbers rising, but they don't have much else to go by, and since it is not going away on its own (like it is supposed to!) they might as well remove it. It does put a lot of extra pressure on my belly, and has grown from 10cm x 4 x 4 to 14cm x 4 x 4. Yuck. So that is it medically speaking. My hubby is going to spend the night with me tonight, ooh la la. teheheehee, just kidding. No funny business here. And Monday, River starts his first day of kindergarten. I'm coming to terms with it but it still really hurts my heart to know I won't be there. I had planned to make him some ABC shaped pancakes and cry all the way home from dropping my big boy off, but instead, I'm making daddy film it all - I don't care who it embarrasses. hehehe

I'm on my 6th week inside and I'm going a little stir crazy, but as they say, I'm feeding my faith and starving my fears! I'll be home soon enough and will have many years with my family to enjoy... and believe me, I will be enjoying every moment of it, I'm not taking one second for granted. :) Don't sweat the small stuff my friends, its not worth it. Enjoy what you have... you could have less. (Oh ya, I should make bumper stickers or something)

Friday, August 19, 2011

3rd one's a charm!

Nancy, my living liver donor!
July 19th, 2011. Just one year and 6 days after my first liver transplant, I was blessed and amazed at the miracle of a second transplant - my 3rd liver! Most of my life, I have lived with the knowing I had a sick and failing lil liver (Remember Larry?) Then last year God answered my prayers, not only by giving me more time on this earth to be a mother, a wife... but by giving me Nancy, a cousin-in-law who matched me AND had nothing but faith in Jesus. I still can't believe the sacrifice she made for me. She is a strong and beautiful woman!! I knew I was blessed, but I never thought I would be THIS blessed!

But I was... It was one month ago today that I went into the hospital (knowing that I would be admitted for one thing or another - but nowhere in my mind was that it would be for a new liver) I had missed my last clinic appointment (we went to the Kern River. tehehee) and I was not feeling tip-top. Jason had dropped me off at USC and went to work and I was sitting there waiting to see what would be poked and prodded next when my doctor came in and said "We may have a liver for you!" My mind went blank but I knew not to get excited because I know others who have had a few false alarms and that is probably what this was... but I called Jason and my mom, just in case. The doctors told me that they were going to see the liver (they go by helicopter - how cool is that), but told me that it was very small so it may not be the right fit for me - It had been to small for the others on the list, but as it turned out, not for me - it was a perfect match!! So at 3:00am I was wheeled into the E.R. and about 8 hours later I had a new liver! A second miracle!! It is still hard for me to think about my donor. To think of the grief that they must have, and yet were still able to be so selfless to give others the chance of life in their loss. I will be writing my letter to them as soon as I muster up what to say... how to say thank you.

Since that day, my numbers have been bouncing around so much that I have yet to leave this place. The other day Jason came in and I said Wow, you're home early. He looked at me and said, "Home?" That is when I knew I really had to get out of this place. I have had 1 episode of rejection, 3 biopsies, 2 cholangiograms,2 EKG's, 1 MRCP, 50 staples removed, a partridge in a pear tree, and way to many shots, blood draws, and X-rays to count. But they still have not been able to figure out why my numbers are bouncing. On top of all the procedures, I am on waaay to many drugs - these steroids are one of the worse with the mood swings! They have also caused medicine induced diabetes - I have been taking 4 shots of insulin daily, sometimes 12 units worth. It has also caused high blood pressure, which I take Norvask everyday for that... not to mention I look like a chipmunk storing nuts for the winter - lovely moon face. I also take such a high dose of my prograf (another anti-rejection med) that I have tremors from morning to night -There is a lot of erasing and "Go Back" button being pushed because I am constantly hitting letters twice. But as long as I get home, it is all worth it - I ain't complaining. Besides, I will be getting home soon if I have to break out myself. I have to be home by the 30th so that I can take River to his first day of Kindergarten.:) I can't believe he was only 2 when we first started getting ready for a transplant "in the future"... and now, I am going to be making lunches and asking my boys around the dinner table how their day went, all without my puke bucket sitting next to me. I am so excited!!

...Well I better get some sleep, I've got to get up at 3 to check my insulin and then again at 4 & 4:30 to get my vitals and have my blood drawn. Hopefully this sleeping habit will be easy to break.