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)

The Bag Lady

Besides Sicki Ricki and Banana mama (you have to say banana the weird way for it to sound right) The Bag Lady is officially my newest AKA. These last two weeks, most of my time has been utilized untangling bags and tubes coming from every which way (not that I'm complaining, since it ate up a lot of  time that normally would have been spent just been sitting in my hospital bed)
I checked in on May 2nd - I knew I was coming in because the doctors and I had been discussing putting a feeding tube in for a while, but April was a big month for me (Rivers, Jasons, and my moms Birthdays, and the Donate Life Walk) so I told them it would have to wait until May (I'm sure my docs just looooooooove me. hehehe) They also had to do a few tests before the tubes were put in. Did you know that it takes about 90 minutes for one half of an egg to digest, and just a while longer for the rest to be completely out of your stomach? Well it does, unless you are me. When I went in for the 3 hour test (a 3 hour test - hehe, Gilligan's Island) to see how long my egg took digest... well, it didn't. That egg sat there the entire time, but did leave my tummy about 6 hours later -- when I threw it up. I guess since my liver isn't working well, my stomach figured it could slack off too. And this is the cause of most of my vomiting, why I'm mal-nourished (no matter how many boosts I drank) and why a lot of medications don't seem to work. Basically, everything stayed in my stomach until it fermented (that's nasty) or until after several meals, it was just to full and had to come out somehow. Needless to say, the feeding tube was necessary. The procedure was easy peasy and even though it is right smack dab in the middle of my tummy, it is not that painful. Getting regulated on feedings is another story. We tried 3 different formulas (for some reason the easiest to digest was the last one they tried) and luckily that 3rd one worked. Then we had to work on the amount, and so far I can only handle a small amount (40ML) an hour, which means that in order to get almost a full days amount of calories, I have to be on the feedings 24 hours a day -- I'm hoping I can build up tolerance so that I can cycle 12hrs on and 12hrs off, then I'd just hook up at night and wake up content and with a whole lot of energy! But for now I am fine with 24hrs, because it's better then barely having the energy to make it to the bathroom to puke. hehee. The feeding tube (J-tube) bypasses my stomach all together and goes straight into my small intestine, but there is also another tube (the G-tube) which goes into my stomach and sucks out anything that I drink, and the stuff that the stomach makes on its own.Which I love, even though it sounds just like when they suction the spit from your mouth at the dentist, but this is what keeps me from being nauseous (about 90% of the time) In Martha's words... this feeding tube -- It's a good thing!!
Anywho, after the G/J tubes were in, I started noticing that I was getting a bit bloated. I thought it was from the feedings and the doctors (even though I mentioned it) didn't seem to notice, that is until a few days later when I started looking about 5 months pregnant. An ultrasound was ordered, and I was sad to hear that I was developing some Ascites (which I haven't had since before my transplant) So the next morning I had a parasentesis, 2 1/2 liters were drained from my abdomen (that is 5 1/2lbs) and I felt a little better - a little lighter. The day after that, my doc reminded me that it had been a month since my last bili drain change, they might as well do it while I was still here. And I knew I wasn't going home that week. When they replaced that drain they noticed a second stricture on a biliary duct a little higher and deeper in the liver. Am I ever going home?? Another procedure was now scheduled to put in a second tube and bili bag. And this one they said would be a little more painful (well they use the word "sensitive", but that's a load of poo - it's pain) which made me nervous because I had woken up in pain and calling for Faith (my sedation nurse) during the last replacement... and that worry was for good reason, because I did in fact wake up several times crying for Faith when they started to put in the second drain, but as soon as they said they were going to stop the procedure because they couldn't possibly give me any more drugs, I begged them to continue -- the sooner this got done, the sooner I'd get home, but they still had a long way to go to finish and I was in to much pain. They were going to have to put me completely under with the good stuff. So I was sent back to my room and told they would do the procedure after the weekend... greaaaaaaaat. Meanwhile my tummy started to grow again, again the docs didn't notice until I looked about 8 months pregnant (popped out belly button and all). So uncomfortable. They decided to add another parasentesis to my Monday procedure (which ended up getting bumped to tuesday) So I waddled around the hospital for the next few days, to full feeling to even keep my feeding tube on. Tuesday finally came, and both procedures were completed with me in la la land. My second bili bag was in place , and this time they drained 5 1/2 liters of ascites (yup, that is 12 lbs) I now weight 115lbs - eat your heart out Richard Simmons, fastest weight loss program yet hehehe)
So, yesterday when the docs came in, besides the pain in my ribs from where they placed the 2nd drain, I felt much better then I have in a looong time. Even thought they told me that my MELD score right now is 22 - higher then it has ever been, and in other states would put me at the top of the Unos list. But when they were talking to me, I could see the little wheels spinning in their heads, and finally one of my surgeons looked at the other and said, "We should do another biopsy" That is when 5 year old Ricki came out. "But I thought I was going to go home tomorrow." I whined. Ok, they said, we will schedule it for today then. I wasn't sure my body could take going under one more time, but it did, and I didn't wake up one time during the procedure.
Wow, are you still with me here? So that was 7 procedures in 17 days, and I'm going home with 3 output drains, 1 feeding tube, and a few new medications... but at least I'm going home!! :) Ya Baby!!