There's no place like...the hospital

I have been home since last Sunday. And the week has been rewardingly uneventful. :)

By Friday, though, I hit a speed bump. My urine is brown, not a little dark like amber-colored, but brown like soda syrup. I am alarmed and it continues throughout the day. I investigate on Google and it could be dehydration, blood or further kidney issues. Uh-oh.

I call the on-call transplant coordinator, who tells me not to get too concerned, it's probably a little dehydration and to boost my water intake. I can do this, but I do have a nagging feeling I'm not dehydrated; I don't have any other concurrent symptoms.

Saturday and still brown urine, and the coordinator doesn't think I should worry as I am due to go for lab work on Tuesday. That is 3 days from now, and based on my post-transplant experience, A LOT can happen in 3 days. I push a little harder, explaining my concern and the on-call surgeon sends me to a local ER "just to get blood drawn." Gratefully, I head off to give the blood and get everything cleared up. I'm figuring it will be like stopping at an outpatient lab. 

Five hours, a blood draw and lots of discussion later, the surgeon remotely orders me to be admitted to the hospital where I had the transplant. It's an hour from the current hospital I'm at.  I am further on edge as the local ER doctor doesn't really have any answers, just that some of my blood counts are elevated and that the surgeon wants me admitted. I don't argue, but leave unsettled as I'd like more information about the situation and risks. What exactly is the reason or course of action for my admission?

By midnight, I am checked in, but still no answers. At 2am, an anxious med student comes in, asks lots of intake questions and looks at my abdomen.  He is in data-collection mode and has no answers either. By 3:10, a yawning resident stops by, asks more questions and lets me know they will be starting a round of IV antibiotics. 

Yay! Some details and action. She tells me about some elevated kidney and pancreas levels and especially a more concerning high white blood cell count(your WBC count goes up typically when fighting something). They can't determine the cause of infection yet but they've drawn more blood to help determine the source. 

At 6am, my old friend/resident George stops by and tells me they've concluded it's an infection and I'm being treated with antibiotics and "Its not too big of a deal." At this point, lying in a hospital bed, feeling less-than-informed, I am not convinced. I do, however, believe that antibiotics seem like a safe course of action.

Eventually, I sleep, a restless, frustrated, want-some-answers sleep. At 10am, Dr Jonsson, the transplant surgeon appears. He talks kind of like the Wizard of Oz, and I really have to press for more details. He tells me he does NOT think its an infection, that the lab work is once again ambiguous. He will send my samples to be cultured to eliminate infection as a cause; this will take 2 days to complete. 

Initially pleased to hear no infection, I quickly remember I still have elevated blood tests and brown urine. And I have developed a nagging pain, not medication worthy, but still there, in my abdomen. Why? Dr Jonsson drops the bomb I am not expecting.

He thinks it is more extensive rejection. He is starting me on Solu-Medrol, an immunosuppressant steroid I was taking during my last go-round at the hospital. He will start Thymoglobulin, a more potent steroid by tomorrow.  He believes I should have had this during my last visit to completely eliminate all signs of rejection. 

I am muddled, thrown off balance. "How is the brown urine related?" is all I can come up with.

Tests confirm there's blood in my urine changing the color. Dr Jonsson believes its probably from my kidney biopsy last visit and the blood thinners knocked the blood loose. He stops blood thinning treatment for the time being.

He stops talking again. We are all silent as I take it all in. I wanted better news, and I am shocked and frustrated at the lack of an answer. 

"So, I will at least be here two days?"

Dr Jonsson looks down and shakes his head. "Probably longer than that," my Wizard of Oz answers vaguely. "These are valuable gifts you've been given and we need to take care of them."

It takes me a while. I am caught off guard and scared and frustrated and tired of always waiting for answers. Doctors are detectives, trying to come up with and prove their theories, not omniscient all-knowing gods. I can not deny my frustration, but I'm not mad at them. I breathe deeply, look around my room and remind myself another stint in the hospital will be a distant memory once I'm living the life I am preparing for.

And Dr Jonnson is right. I realize I am not in a rush to leave, and I need solid answers and definitive action to be taken, which can only happen here in the hospital. There will be no clicking sparkly red shoes or chanting "There's no place like home" for me.

I let the doctors leave and I reflect on what he's told me. The situation is frustrating and the treatments are contradictory. Taking a potent immunosuppressant furthers my risk of infection, which may or may not be the reason I am here in the first place. How will this risk be balanced? How long will the Thymoglobulin stay in my system? When I go home, will it be risky to be exposed to my five-year-old bundle-of-germs?  How long does "longer than that" imply? What about the pre-existing blood clot and the effect of taking away blood thinners? Are these complications typical? 

I take notes on my questions to ask George when he returns.
I breathe some more.
And I...WAIT.