Monday, July 19, 2010

The continued ramblings of the Scantephant

As most know, I was in the hospital AGAIN, last week. I was admitted to UPMC on Friday, July 9th after being at HMC on Wed and Thursday for a change of my NJ tube which had become clogged. I was at UPMC for a week basically for symptom control, testing, and nutrition.

I saw Dr. Kareem on Friday, July 16th for the first time since arriving. He gave me a number of options regarding my next steps. In the end, I decided to have him leave in my NJ tube for another week and try to see how it goes eating. If I can't keep up with it well, I still have the tube in for the rest of this week to use for feedings as needed so I don't get into a bind nutritionally. If that happens, we will probably pursue the next phase which is to have a j-tube placed surgically. The good news is, Dr. Kareem has agreed to do it which takes me out of the middle of it between my separate teams of physicians. At the same time, he will also do a full thickness muscle biopsy of my small bowel to try to determine whether or not I am in chronic rejection. Neither one of us thinks this is the case. We think it's more the dumping syndrome and gut dysmotility creating the havoc, but he said as long as he's in there, he might as well do that too along with exploratory surgery of the other organs. He didn't say, but I suspect he'd also do a lot of "clean up" of adhesions from my previous surgeries. He did this a couple years ago when I had my muscles closed. Apparently I was quite a mess at that time. I DO think that adhesions are contributing to some of my current problems so that could be helpful. Of course, any time you have a surgery, it only creates MORE adhesions.

My job this week is to work on eating as well as I can and see if my gut can tolerate it. If it does, great, we'll pull out the tube in clinic on Monday (the 26th). If not, we'll discuss the next option. He says the j-tube is a better option than the Peg/pej in my case because my particular motility issues will only create more problems with leakage and infection around the tube site if placed that way.

Last week in the hospital I started to have a lot of pain in my right hand. That hand has a tendency to be more purple than my left hand, something Dr. Kareem has noticed in some of his pseudo-obstruction patients. At first they thought it was tendonitis. It became so painful that I was requesting Tylenol in between my dilaudid to control it some. The pain started going up my arm and it started to swell near my elbow, so they had me watch for blood clots. In the end, my hand ended up swelling up so much and it became clear that I was holding in fluid because when pressed, my skin maintained it's indentation. They aren't sure why I was having so much pain from it unless it's because the tissues were inflamed from the fluid. Regardless, it has been improving and most of the swelling and pain is gone now. I also developed some fluid buildup in my abdomen which is still trying to dissipate.

For months, I have had difficulty urinating. There's hesitancy and I stop midstream (sorry people, it's life)! I've been to a urologist and had testing done which came back negative, as expected. This is a problem I developed in the final two years before my transplant as well and is not uncommon in CIP. The problem became even more apparent last week. I had been struggling all week with it, and finally lost it emotionally on Thursday after my biopsy. I was tired, coughing a lot because they had trouble getting the scope down my throat because of the NJ tube, and they had whisked in chest x-ray to make sure I wasn't developing aspiration pneumonia and to do an abdominal x-ray because GI thought they had dislodged my tube. I had to pee so much, but I couldn't and hadn't since Wednesday. My nurses decided to do a bladder scan which showed 700 cc's of fluid in there! That's a lot! They decided that, clearly, after all this time there was a problem and they would have to cath me in order to get it out. I was so upset over everything that this only made things worse. Thankfully my friend, Nancy, came by not long after all this started and was able to cheer me up with party hats and blowers.

I still had a lot of problems the rest of Thursday and went at least an 18 hour stretch without peeing. My doctors made it a requirement of discharge that I go before leaving the hospital on Friday, even though in between being cathed on Thursday and the trouble on Friday I had gone twice on my own. I'm still having a lot of trouble with that. When I had told my docs last week and they remembered that I had already seen a urologist, they just all looked at each other and made the comment about how it's the pseudo-obstruction. This new problem scares me somewhat because it may mean that the native condition that caused all my problems in the first place is creating havoc again, although, we've kind of started to come to that conclusion already. Initially, I was concerned about kidney damage because transplant meds often lead to kidney failure 5-10 years post-transplant, but fortunately my kidney numbers still look good!

On the positive front- thanks to a number of people banding together, and a LONG battle for every single vote for four weeks, last Monday G-PACT secured a $20K grant from Chase Community Giving! We have awesome ideas for these funds. We needed this money so much in order to move forward with a number of initiatives and it was just really cool how it all came down in the end! We were nervous in the final days as we had fallen from well within the safety range of receiving them all the way down to the bottom, but thanks to a few dedicated people we pulled through! A number of people hung around for hours online Monday night and IMed every single person who logged on to their friends list on FB and asked them to go vote for us to get the grant. Others had written every single person on their lists individually and asked them to vote. Many re-posted the link on their walls, at least once. In the end, it all paid off and every single vote turned out to be crucial as we barely pulled it out by 42 votes, finishing 189 out of the top 200! We needed to stay in the top 200 to receive the funds. We were all ecstatic once it was over with. While it was kind of fun on Monday night, late, watching as every vote came in like the night of election returns, we were all glad when it was over with and we actually had the final notification that we had in fact made it. A few people ended up in the hospital due to getting sick as a result of working so hard on it. Everyone who worked late that night was exhausted. Many stayed up late too excited to sleep. My room was right next to the nurses station and I was so caught up in what was going on I hadn't even noticed that all night long my door was open and my light was on. Finally, around 1 am one of them yelled into my room and asked what I was still doing up! I was kind of floored that I hadn't complained about my door or noticed it was open all night! I was too engaged in the task! It was worth it. The money will definitely be put to good use. We are going to have a board meeting soon to discuss the best way to use the funds and which awareness project to move forward with first. It's just really cool to see how people are coming together to help fight GP and CIP!

I got to meet Jodee Reid and her daughter, Matisse, and son, Fraanz, on Friday before going home. That was a lot of fun. Matisse has been waiting for almost four years for a small bowel transplant. They came here from New Zealand. I've been in touch with Jodee quite a bit for years, but this is the first time I got to meet Matisse in person. She's a joy and full of life! I had some party hats and blowers left over from my "party" on Thursday that Nancy had brought me that I gave to them and they certainly woke me (and the entire floor!) up! They were up there visiting Pauline too, a young lady from Australia who had a five organ over a year ago and was on my floor again. After they left my room, they went down to the garden with Pauline and her mom for a while. There was a nurse down there playing music, and apparently the kids and Pauline blew their horns as the nurse played and sang!

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