I've been away for awhile, so I'll try & catch u up

Apr 15, 2014

I'm going to copy/paste the updates I sent to my family in order to bring you up to speed:

Well, the weather sucks, cold & drippy. I woke up late, but still managed to get to my 9am appt on time, wanted to make sure I got every bit of the hour and a half that the doctor was running late, ba duh bump...my bad joke of the day.  So, I haven't seen Dr. Kroh in over a year, I filled him in on the roller coaster ride, including the trip to mayo clinic and the report of all the adhesions/scar tissue that are causing at least some of these obstructions. I filled him in on the TPN, and that I can only do every other night due to the stress on my liver. I told him that I had signed up for palliative care, but that they have been unable to really help me stay out of the hospital, even though we begged for them to do what they do in the hospital for me at home that they do in the hospital, I have a port, and my doctor's blessing, but he even called him after this last flare up/obstruction and they told him that since I don't have end stage cancer that they can't really help me (trust me, I am so very thankful I'm not), but I fall through the cracks. We even inquired about the newly passed medical marijuana law in IL, even though I have mixed feelings about this (what message am I sending my kids?), but again, I don't meet the criteria, not even for the pill form. When I explained that to Dr. Kroh, he said it was ridiculous, and I agreed and just reiterated that I'm not dying so they can't help me, he then said (respectfully and with compassion) "well, you're not dying this minute, but you are looking really thin since the last time I saw you, and you look tired/run down, TPN is short term not long term and your liver is already taking a hit, and your nerves that control your digestion are shot and can't be repaired, so you are at end stage bowel (intestinal) failure." He agreed that the scar tissue is part of the problem, but he said the surgery would be complicated and dangerous due to all the previous surgeries that were done before I started coming to cleveland. He is working on making me an appointment with the Intestinal Therapy docs here at the clinic before I leave to discuss a total intestinal transplant. In his opinion, it's my last hope. He said that if I have another obstruction in the meantime, then I should call him and he would have me transferred from the hospital in IL to him here at the clinic, so he could do emergency surgery for the obstruction.  I don't know much info about this transplant stuff, it seems rare, I'll know more after the appt.  I'm officially scared, and I spoke with Marty about it and he calmed me down. 

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