"Be patient, young lady!"

Saturday passes mainly uneventfully. Dr Wali and George, a now familiar resident, update me.  My labs are remaining constant, not yet improving. I know this is better than getting worse, and they seem upbeat. I want to know why I am not improving faster. Dr Wali explains that the stress of the situation, the medications being used to treat it, AND the acute illness are all contributing. "Be patient, young lady!" (I'm pretty sure he calls me this to divert my path of questions, and keep me positive--it works, for now.) I still plan to go home Sunday.

George goes over more details. I will have to keep taking Coumadin and injection-based Heparin at home, still maybe four-six weeks, tapering off towards the end. Coumadin and Heparin are not that risky for me, but pose a more substantial risk to older patients. However, I am to avoid knife fights and contact sports while taking them. I can make this sacrifice.

I will continue taking the steroid prednisone for about 3 months, also tapering off.  I have heard some horror stories about prednisone, but George assures me I am at low risk.  I will continue to have high blood sugar, high blood pressure, weight gain and maybe some other minor stuff. Fair trade off to rid myself of organ rejection.

All in all, good news. I'm tired of the hospital. Being at home means multiple trips to the lab and hospital each week, but it also means sleeping in my bed when I want to and leading a more "normal" (to me) existence. Hooray for Sunday!

Saturday night comes and the nurse lets me know I need to switch rooms to consolidate patients. We load up in a wheelchair and I wait outside the room I'm scheduled to go in. I am taken aback when what feels like a clown car full of people, including a sneezing teenager and a baby, are making their way out of my soon-to-be new home. I laugh as I watch them load up the stroller, blankets, jackets and all the other stuff required to navigate a big family. I close my eyes, imagining them tripping over themselves to get out, with their red clown noses, spotted hats and Ronald McDonald shoes. At this point, I realize how much I do feel like an organ transplant patient; there are a lot of potential threats to my health pouring out of the room.

The dad lets the nurse know they are cleaning up their stuff off the spare bed, which will be mine in a few minutes. Ugh. I have mixed feelings on this situation. They are a cute clown family and I do not want to offend anyone, but I am on immunosuppressant drugs, I can't see my own children because of the fear of kid-germ exposure, and I really want to avoid any potential risk at all.

I gauge the risk back and forth in my head. Luckily, it takes them a while to load up, so I have some time to think. Ultimately, I err on the safety first side. I share my concern with my nurse, who discreetly gets me checked into a private room down the hall. I am relieved.

They'll be plenty of time for real-life encounters in the future. I'll have runny noses to wipe, diapers to change, greasy dishes to scrub, and bathrooms to disinfect. Just not tonight. I remind myself getting back to real life, in all aspects, will take time.  For today, no knife fights or unnecessary contaminants or running any marathons.

Maybe tomorrow :)

Definitive but Disappointing

Dr Wali and team returned late yesterday afternoon. He tried to keep his news light. "What do you think the biopsy showed?"

I didn't blink. "No rejection." I was certain.

"You are strong and positive." He smiled and shook his head. "I'm sorry, we lost the bet. The biopsy showed signs of rejection."

Huh? I was not prepared for this kick to the gut. I was counting on Dr Wali's opinion to be the winning one. It took me a few seconds to catch my breath. Deflated, I asked him how substantial the rejection was. He explained it presented as mild in the kidney biopsy, but pointed out that the rejection found in the kidney would not be as substantial as what was present in the pancreas because that's where it started. 

He went on. They would continue the Solu-Medrol steroid to suppress my immune system from further rejection. I would need 5 full treatments and should be able to go home by Saturday. They would also continue the Heparin blood thinner to break down the blood clot near my pancreas.

"Why don't you just give me the super strong steroid, the Thymoglobulin, so it removes all chance of rejection?" I wanted to eliminate any possibility of the rejection surfacing again.

Dr Wali told me that strong of a steroid would compromise my immune system too drastically and I would be at undue risk for infection, like pneumonia, a cold or just about anything. He said the rejection would have to be much more substantial to merit that sort of treatment and the potential risks that went with it. 

Hmmm, good point. I quieted, unable to come up with more questions.  They would keep checking my blood results every couple hours and adjusting my steroid and blood thinner regimen based on the lab work over the next few days.  There's a balance that had to be maintained to ensure improvement. 

I thought of an important question. "When should I expect the rejection signs to be gone? How will we know for sure?"

The doctor couldn't give me a specific answer but assured me they wouldn't send me home until my lab results indicated substantial improvement and that I was only trending in a positive direction. Once home, I will continue on oral blood thinner(Coumadin) and oral immunosuppressant steroid until all my lab results are back to safe levels and the risk for rejection is eliminated. He ventured that it would take a week or two, but not a month. The additional medications will be tapered off and not planned to be a long term treatment.

Dr Wali comes back this morning, and again it's not my favorite news. He lets me know my current lab results are going to keep me in the hospital at least until Sunday, not Saturday as originally planned. But he is still sure we are taking the correct course of action. 

My father-in-law just sent me an email, reminding me that 24 hours is not that long to wait. I guess...it's just one more day in the hospital. And lots more blood draws. I look down at my arm, wondering if my poor veins can take another day, now another two days, of this "therapy."

Again, I am stunned. And silent. And unsure how to handle the news. It could be worse, but I am disappointed. I'm not ready to share the news with anyone and I sit on it for a little while, just taking it in and feeling it out. I try to rationalize that 80% success rate is not bad, but my logical brain reminds me that no rejection(ie 100% success rate) is a much more appealing situation, and it's what I expected to hear.

I'm concerned about the side effects: the steroid causes high blood sugars and I'm once again taking insulin to keep it down; it also causes high blood pressure and they're giving me Norvasc to keep it down. More medical treatment to treat medical treatment.  Because of the blood thinner, I need to be really careful and avoid getting cut for a while. I'm not that careful in general...

I take a deep breath and exhale slowly. 

So, another hurdle, and more WAITING.

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.