Tuesday, February 15, 2011

"The Doctor on call said NO"

I was just sitting here this morning, watching the birds outside my window and drinking my Boost on the rocks. tehehee. Yesterday was my clinic appointment --yup on Valentines day, which I hope you had a lovely one, shared with the ones you love and appreciate!! Most of my day was spent with nurses, but my hubby stayed with me the whole time. Awe. Anywho, my labs haven't changed much, still not good, but they didn't need to admit me! Thank you Jesus!! I will be admitted some time next week though. They are going to up-size my bili-drain again. Ouchieeeee! But, before I forget, (I know I have said it many times before) I wanted to remind you guys that you have to be your own advocate! (and sometimes that demands you to be a little ...ummm, demanding!)

Last month I had to pull myself out of my comfort zone and fight for myself a few times in the hospital, and let me give you a little tip. There is always someone higher on the medical ladder then the person you are talking to. I know I have mentioned nurses that said "ewe" when I threw up and others that left me sit in the bathroom while they went on lunch, and each time I could have done something about it. If you are having a problem with your nurse, try talking to them first. This time I had a nurse that was getting ready to give me my I.V. pain meds but decided to first lecture me on how pain "normally" works, how it grows on their magic pain level scale from a 1 to a 10...how you should ask for the pill form of your pain medication before it gets so bad that you need I.V. form. After a few seconds of this, I quickly stopped her - told her to give me my medicine first please and then explained to her that I in fact have been sick majority of my life and have actually had 6 or 7 surgeries (depending on how you count) and sometimes pain does not climb the number scale at all, but jumps it and hits an "8" full force. Originally I could tell she was irritated with the fact that I had made her go back and get the I.V. med after she had already brought the pill, and was actually a little stuck up sounding while she educated me on pain, but she calmed down after that. Now, sometimes they may not see the errors of their ways, or maybe you just don't like confrontation (which believe me... a few months ago - I would have just bit my tongue and cried after, repeating, noooooo one understands me.)  So if that is the case, NEVER forget about your charge nurse. They are above your nurse and have authority to change your nurse at any time, or they can talk to them for you.

Another issue I had was that my pain seemed worse at night (when my regular doctors were already home sleeping) By then my I.V. pain meds had been discontinued. One night the pain got real bad and I needed some serious pain relief. My nurse called the doctor on call and they said "No" to giving me anything via I.V. so I told my nurse to call them back and tell them that I wanted to talk to them. Within 20 minutes my nurse came back in --not with a phone, but with my meds. The next day when my doctors were making rounds, I let them know what had happened and they spoke with that doctor, letting her know that if I needed it to give it to me... It is not that I am trying to get anyone in trouble (and trust me, that is the first thing out of my mouth each time) but as patients, we have rights, and one of them is to be comfortable... I'm just sayin' :)

Sunday, February 13, 2011

Another long run!

I can tell just by their ringtone when they call. (I'm not psychic or anything, they just have their own ring tone. ehehe) Any who, on Friday, January 7th, my nurse coordinator Kaily called and said that I needed to come in that night because tests had come back positive for CMV. (click here for CMV info) They also wanted to "readdress" the fact that I was still jaundiced and oh so itchy.  Right when I got there that night they started me on antibiotics and fluids. Sunday they did another biopsy. The good news was, there was no CMV infection in the liver, the bad news was that my liver was NOT happy. My LFT's were very high, and as I have mentioned before, fibrosis had already started on my new liver. We had (kinda) hoped that the CMV was in the liver because that could have been the reason my liver was so unhappy, but it wasn't. My bilirubin had climbed into the 20's now (normal range is under 2) And just for fun I had calculated my MELD score with my latest labs, not expecting it to show my score to be in the mid 20's itself. (Though this drops significantly when your bilirubin drops)
Because they could not find anything else wrong with my liver, the cause for the rapid damage was assumed to be because of my HCV, but they wanted to do one more test just in case. They re-did the MRCP (like an MRI) and like before, did not see anything significant; but unsatisfied with that, my docs decided to do another ERCP (tube down the throat) Low and behold, they found a stricture in my bile duct... a pretty bad one at that - it was completely closed and double the length of most strictures. They were unable to put stents in, so later that day they came and got me to put a bili drain in (click here for more bili drain info) My only question was... "How many times can you put someone under in one day?" ...More then twice I guess. :) This drain was much more painful then the one I had right after transplant... they go through the ribs (and I guess through the diaphragm too) and boy does it hurt to breathe sometimes! That first week I was pretty loaded up on the good stuff. I would start to dream as soon as I closed my eyes (and sometimes I just closed my eyes for a second when someone was talking and I would see something else, and when I opened my eyes I would say something completely off subject or just strange) Needless to say my mom was a little concerned with the amount of pain meds I was receiving. The next week I was taken off most of the pain meds and was starting to feel a tad better, and that's when they decided that the drain needed to be larger. I went back under and again was in some serious pain after (but they wouldn't drug me up again all crazy) This time the drain was draining like crazy, and my numbers, including my bilirubin, began to drop. THIS COULD BE THE REASON MY NUMBERS WERE SO HIGH!! It's possible that my Hep C is not as bad as we originally thought, it could be the stricture causing the damage!!  This is better news, because it was finally diagnosed and it is something fixable!  I am now doubly hoping this is the case because while I was in the hospital they also discontinued my Ribavirin and Interferon treatment. It wasn't working, and actually may have been working against me this time. Still though, it was a blow to me when they said they were taking me off. There was only a 20% chance of it working, but I thought I miiiiiiiiiiiiiiiiiiiight be one of those 20%... maybe? Well, C'est la vie. I hated that stuff anyway.
After about a week of my new lil' bile bag draining, the docs decided to cap it off (meaning no more bag - and hopefully the duct would do it's job now that the drain was in there to bi-pass the stricture) but that was short lived, as my numbers (mostly my Bilirubin and Alk Phos) began to rise again. A new bag was put in, and the numbers dropped back down some. By now I have been in the hospital for over 3 weeks. Each day, the doctors would come in and say "...Maybe you will be able to go home tomorrow." Finally, after a few days of working out some kinks (more blood transfusions, Neupogen injections, fever, and of course, magnesium drips) and dealing with some pain management "issues" --On Saturday, February 5th, after 28 days in the hole (tehehee) Dr. Alexopolis came in and said "Well, your numbers are still pretty bad, but they are way better then when you came in... so, what do you want to do?" (overly eager) I said, "I wanna go home!!" and just like that (6 hours later) I was heading home!

The only great thing about being in the hospital for so long is when you finally get out. You know you made it through, and everything you see seems even more beautiful then it did before!