Friday August 19

Was up at 5 to go to clinic.   We got there and they took my labs.   I was sneezing all night long and woke up with a headache and sore throat so they did a viral swab test where they stick this long qtip up your nose so far that it feels like it's poking your eyeballs.  Not the most comfortable thing but it's precautionary.  The doctor also ordered a blood test to check my heparin levels because the lovonox shots have my arms and legs swollen and black.  That's a four hour test.   They did the first portion of it around 7am so we had to wait until 11 to do the second portion.  They also decided to put me on trazadone to see if it would help with my poor sleeping.  He thinks my lack of sleep is due to the steroids but they have to keep me on the dose I'm on.  I also had a few prescriptions that I needed refills on as well so I gave them to Bill and he wrote new scripts for them.   Colin said he would drop them off at Target to get them filled.  He called the pharmacist at Target to make sure they had them.  There were a couple she had to order because they didn't have them in stock.  

Colin left around 8 to go to the cafeteria and get something to eat for breakfast.   While he was gone Dr. Cruz came in to my room and sat down beside me.  He told me that all my labs look good.   All my levels are where they should be.  He said that we just had to wait for the second set of bloodwork at 11 and then we could go home.   He said he would have them call us with the results so we didn't have to wait around.  

Dr. Cruz also said that he knows I'm discouraged and that the first 6 months after a transplant are hell.  He said that everything with the transplant itself is going really well and that all of my setbacks so far are off the wall / abnormal things that are more related to the medications and my blood pressure.  He told me that an intestinal transplant is the most difficult transplant you can get.  The recovery is more difficult than any other transplant you can get.  He assured me that things are moving in the right direction and it's going to be at least a year until I'm back to "normal" or whatever my new "normal" is going to be.  He squeezed my hand and told me I'm doing great and to keep listening to my body and not push myself too hard.  He also told me he was going to have my coordinator schedule my reversal surgery and that she will give me a call when it's scheduled.  I thanked him for everything and he left.

Colin came back and I told him about our conversation.  He was upset that he missed it but said that it all makes sense and will fall into place.  I worked on organizing some mail and paid some bills while we waited.   Colin and I also went for a walk up to the 11th floor to visit since we had time to kill.  

11:00 finanally came around.  They took the blood they needed and told us we could go home.   We headed home.  Once we got there Colin made me lunch.  Tuna salad in a wrap with some chips.  After lunch I went in to the bedroom and layed down.  Colin ran over to target to give them the prescriptions and to pick up the ones that they were able to fill.  He came back and sat in the living room watching golf.  I stayed in the bedroom and chilled out watching flip or flop.  Around 3, my coordinator called to tell me my heparin levels were high and that I need to adjust the dosage of lovonox.  I asked her if she was able to schedule my surgery yet and she gave me a date.  As of now, my illeostomy reversal surgery is scheduled for Oct 8.  As long as everything goes according to plan, I will be hospitalized for a week after surgery.  They said we will have to stay in Pittsburgh at least another month or two after the reversal.  I'm a little disappointed because they were telling us that surgery would be the second week of September but with Dr. Cruz taking time off for the baby (who is due today), his schedule booked up quickly.  

I got up and out of bed around 4.  I started making dinner.  We had homemade turkey sloppy joes with ranch roasted potatoes.  It was really good.  Colin got up and cleaned up the dinner mess I made in the kitchen.  I stayed in the living room and watched tv with him until about 7.  I made my sleepytime tea and went to bed.  I took my 8:00 meds a little after 8 and fell asleep a little before 10.  It was a long day!