I Vote for No Rejection - Nov 7, 2012

The night shift resident returns at 7 a.m. and continues on the same path as Dr Piper started down. My lab results have come back and things are still trending in the wrong direction, indicating more symptoms of rejection. My pancreas performance numbers are off. My amylase and lipase are outside of range. My blood sugar (previously 80-90s) is 150. And my creatinine, demonstrating the level of blood toxicity via the KIDNEY (Now it's affecting my kidney? I thought the concern was for my pancreas?), has jumped from 1.0 to 1.3. My GFR, the percentage of effectiveness of the kidneys has dropped drastically from >60 percent to an alarming 46 percent. My blood pressure is high (160s/90s) when last week it was so low I was having dizzy spells and taking salt tablets to raise it. 

He softens the blow, but only a little. My creatinine is still good, but trending up is not. My elevated blood sugar might be a result of the steroid treatment but there's no way to confirm the cause.

The resident asks me if everything is good. Color me confused.
"No," I answer honestly. "I just learned I have more signs of rejection and that the treatment can give ambiguous results. How will we know if the immunosuppressants are working or not?"

He explains that we simply have to ...WAIT. They will continue to check labs every four hours. I want to know how long to expect on this waiting, but he explains there's no concrete answer he can safely give. I search for the silver lining in his update, but I'm struggling to hold on to how positive I can spin this situation. Again, I feel confused and disappointed and frustrated and powerless. 

I force myself to sleep. My other surgeon, Dr. Wali, comes by on rounds with three residents. I am happy to see him: he is definitely a face and voice I trust.
He shares his opinion with me: He does NOT believe I am experiencing organ rejection! His team has been analyzing my results and condition, and the doctors do not agree. The final votes are two surgeons and two residents say it's rejection, one surgeon and one resident believe it's not. Predictably, I vote for no rejection. 

Dr. Wali explains the results are ambiguous, that some factors lean toward rejection, while others are not consistent with that diagnosis. He recommends another ultrasound, and if it shows substantial improvement, rejection can safely be ruled out. If the ultrasound shows worsening or no improvement, a biopsy to rule out rejection will be necessary. 

I'm surprised when he tells me they'll do a biopsy on my transplanted kidney. My kidney? For a pancreas rejection? He explains the organs are from the same donor, so if my body is rejecting the pancreas, it is simultaneously rejecting the kidney. And it's safer and easier to sample the kidney.

Dr. Wali goes over what the biopsy results will tell us:

   1. BEST RESULT: No rejection

   I will be sent home tomorrow on blood thinners to treat the clot.

   2. GOOD RESULT: Mild rejection

   They will continue to treat with Solu-Medrol steroid immunosuppressant. This is the       
   result with 80 percent success rate quoted by Dr Piper.

   3. NOT-SO-GOOD RESULT: Substantial rejection.

   They will treat with a more potent steroid, Thymoglobulin, that I was taking immediately after transplant in hospital. No specifics on outcomes are discernible until after the biopsy results show how substantial the rejection is.

I am pleased and hopeful with Dr. Wali's opinion, but I am aware that other doctors don't agree. The lack of a definitive conclusion frustrates me, but Dr. Wali assures me that 24 hours after biopsy, the results will be clear. So, surprise, surprise, my primary course of action for the next day will be ...WAITING. 

I go for an uneventful ultrasound and the tech confirms the clot is still there, and its size remains unchanged since Monday. Biopsy here we come.

Dr. Wali performs the biopsy. It isn't as painful as I expected. The anesthesia hurts more than the biopsy needle. It's just a tiny sliver he removes from my kidney, but there is substantial risk for excessive bleeding with the blood thinners I've been on.  

The hole from from the biopsy is just the size of a needle. The bandage, with a huge pack of gauze, is stretched as tight as possible and runs the full width of my abdomen and around my hips. Uncomfortable is an understatement.

Dr. Wali reminds me he thinks there's no rejection and he's looking forward to being right. Me, too. I am not looking forward to the next 24 hours. I will have vitals drawn every half hour for the first few hours after biopsy. I will have extra blood work so I can receive a plasma injection to help my blood to clot. The irony is not lost on me. I've been on anti-coagulants for two days and now they'll need to administer a coagulant because of it. Medical treatment being used to treat medical treatment. I don't argue. I'd really like the bleeding to subside. There will also be repeated blood tests to confirm my body reacts appropriately.

Not going to be a restful night, but I am eager and anxious for tomorrow's news. Again, I'm trying to focus on the positive. I've grown attached to my new functioning pancreas and my new functioning kidney and the results they have been providing. Despite the pain and the exhaustion and unexpected events, I really appreciate not performing dialysis and not repeatedly checking my blood sugar and not taking insulin shots four times a day. And I really, really look forward to the opportunity to live a longer life, to live it with an increased quality of life and less dependence on machines and doctors and shots to maintain myself. I'm not ready to give up on seeing my kids become adults, experiencing my soon-to-come freedom and creating an inspiring future.