Busy Week

Well, the tests came back on that rare form of rejection, and since they removed the central line from my neck, of course it came back positive... so the line had to be put back in. I knew I should have fought harder to make them wait til Tuesday for the results! So another central line went in (this time unfortunately, it was much more painful - different doc., less patience and definitely less numbing medication. I felt like I was in the movie "Saw" when he was stitching it into place. I got goose bumps just thinking of it) Anywho, So Tuesday night they put the line in and started my plasmapheresis again. Hopefully it works, some of the interns hadn't even hear of it.

Thursday I had a whole lot of poking and prodding... special blood work, an upper G.I., a MRI, an ultrasound, and some X-rays,  (I'm sure I could throw a few more letters at ya! hehe) And it was a plasmapheresis day too. So I was wheeled (in my bed) from floor to floor, test to test, and started to feel like I was a float princess... I know a lot of people here now so I do a lot of waving. It was a busy day, but Friday ended up being even busier. I was resting when all of the sudden my nurse came in and said I was going for surgery -- ok, I must have been sleeping because I said "no problem" and started to doze back off, but within 15 minutes there were a flurry of doctors in and out of my room to have me sign consent forms. Not even another 15 minutes later (I barely had enough time to call Jason) and I was being wheeled into surgery - no pre-op room or anything. From the tests they had done the day before, they found that my abnormally large Hematoma was pressing on my bowels and tummy, which was probably the reason I was getting nauseous so much. So they did about a 2" incision and cleaned it out and since they were in there, they took a biopsy and looked around to make sure everything else looked ok. They also placed another JP drain to get rid of the extra blood and fluids. Lovely. All together it was about a 3 - 4 hour surgery, 1 hour in recovery, and then I was back in my room. All in all it was a success, even though it will take another 2 weeks to get the biopsy result back on whether or not the Plasmapheresis was a success...

So that was my week in a nutshell. Speaking of nutshells my cheeks have not seemed to stop growing, I now not only look like a chipmunk, but rather a chipmunk hoarder, storing nuts for the next few winters in my cheeks. And speaking of seasons, I realize I pretty much missed summer all together. I got to celebrate the 4th of July and then BAM, hospital... and now it's September! It has been pretty tough, and the world does not seem to stop spinning for me. Hopefully this week will be the week I go home!!

By the way, if you have Facebook, you probably already knew all this... sorry bout that. It is easier to update there daily without all the emotional mush. :)

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)

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.

Feeding tubes, Stomach suction, and Dehydration

Ok, so I knew that life after getting the feeding tube wasn't going to be A-OK right away, but I was expecting to feel a lot better... I am starting to realize that things do NOT happen as quickly as I expect. :(  I know it has been a while since I have really updated anyone on what has been going on, and I would looooove to say that I have been out living it up, but, I haven't. Though now, almost 2 months after placing the G and J tubes, I think we finally have it figured out... Normally I don't like to place blame, but this time I have to admit that I am a little peeved at my Docs. From the very beginning of my feeding tube, I had asked them several times, "Is this enough water for my daily needs?" It just didn't seem like enough to me, but they assured me that it was. I was sent home in mid May, and after a few days I started to notice that I was throwing up daily and getting weaker and weaker. Honestly, about 4 or 5 days after being released I should have called and went back in... but I am a stubborn one (sometimes) and a baby, and I just didn't wanna!! I wanted to wait until my clinic appointment the next week (don't judge me) which I did, and of course was admitted. It took quite a few days to get my electrolytes balanced back out and re-hydrated. But what caused the throwing up in the first place?? A few tests, (another endoscope) but nothing showed unusual. So another week in the hospital and I was released feeling pretty good again. But again after a few days I began throwing up and feeling weak, and again decided to just wait until my next clinic appointment to be admitted again. Again they had no idea why I was vomiting (it should have just been coming out of my G-tube), the feeding tube and venting tube were in the correct spots so it was a mystery. One thing different this time though was I spoke to the dietitian and was told that I should be pushing about 300 mls extra down my J tube to keep me from being dehydrated. Hmmm... that's interesting. Meanwhile my weight was continuing to drop, I was about 108. Again I was sent home... again I was admitted about a week later. This time they decided that because I was loosing to much weight, my formula needed to be changed to a less concentrated formula with higher protein and more calories. (I prayed real hard my tummy would handle it) And it did. Yaeeh! Now I needed about 500 to 600 mls extra pushed through my J tube daily. You are probably really sick of hearing this by now, I'm sick of writing it... but again, I was sent home, weighing 101 lbs. And no joke, (almost 2 weeks I lasted this time) but I was admitted again, and finally  they added Potassium to my list of medications (since it had been low every time I was admitted - this time it was so low they had to keep the heart monitors on me for the first few days - the worlds hardest crap to get off your skin after - anyways, they also FINALLY decided that besides the 500 ml that I need in addition to my formula, I also need to make up what I lose through my bili drains (Billy and Billi Jean are their names. hahaha! I have to find ways to entertain myself - like I said before, don't judge me. hehe.) --It does make sense to me, and irritated me greatly that they didn't think of it before.

So I was released again on Saturday, July 2nd. But I am feeling much more optimistic this time. I was even able to go to the family 4th of July party yesterday and sneaked in a little rice too (teheheee) I sat in the sun, watched River swim for a few hours as we listened to classic rock. My uncle even went to the store and bought me a fuse banana colada (No - there is no alcohol in those) but I freeze 'em a little and they turn into a yummy slushy treat. They lit a few fireworks and then I went home and slept almost 14 hours (building my spoons back up!) It was a great day out, and hopefully the beginning of nice break from USC! I tell you, these last two months... they've been a real bummer. I was becoming very discouraged and started to wonder if I was even going to make it for another transplant. I just need to remember to take it 1 day at a time. It's kind of like when I clean my house (well when I used to) If I started thinking about everything I had to do I felt like you could see the smoke coming out of my head as the list in my mind was becoming longer and longer until I would just throw my hands up and say "I can't do all this" But after I was done freaking out, I would remember to just look at it section by section, and it became doable. Same with this... so these last few months have been filled with me dragging my purple puke bucket around in one hand, my I.V. pole in the other, and having mini nervous breakdowns, but like I said... I know it has only been a few days, but I feel different this time and hopefully I can keep it up and stay out of the darn hospital for a while!

I hope you are all enjoying this beautiful holiday weekend!! I can't wait to be free from all these bags, poles, and machines. Actually, I can't wait to be free from this disease!! But that is something that is really taking a lot longer then I had hoped... Thanks for reading these novels, and if you have any questions feel free to ask, believe it or not I do leave out a lot of information, but it is only for length reasons - I can't even stand all this babbling sometimes. Hehehe. I hope you are all doing great, and if not, just remember to take it one day at a time - "just keep swimming" and that it will always get better - "It can't rain all the time" ...(I hope)