99% is an A+ !

I have been home for four days in a row. It hasn't been hard to adjust.

Little by little, I am returning to real life. I sleep on a regular schedule, get up with the kids, go to all my appointments, work a little, taxi the kids around, do chores and make dinner. Mostly. And I nap a lot.

I am so lucky to have had my dad here to help me.  Well, sort of.  Up until this point, he hasn't actually been helping, he's been doing.  I've been the one helping him.  I know he wants to and enjoys time with his grandkids, but being a dad when you're really a grandpa looks exhausting.

My removed stent

I have my stent removed today.  It was placed inside my transplanted ureter at transplant to keep it open, but its no longer necessary.  The procedure only takes a few minutes and is uncomfortable but not really painful.  (I think I've built up an almost impenetrable strength/resistance to this kind of stuff.) The doctor advises me to be wary for excessive bleeding, but all day long, there's been none.

 

 After stent removal, I have my first post-hospital-release outpatient clinic appointment.  I'm feeling a little paranoid that anything could go wrong given my history, but everything falls in place.  My blood work looks great and I get back the best results I've gotten yet!

Dr Wali had previously explained to me that my CD3 level measures the amount of rejection cells present in my transplanted organs.  This test takes two days to culture. Upon admission, my CD3 was an acutely high 41%. (I'm not sure that I understand this completely, but logic says that leaves only 59% for the healthy organ cells...Ugh!) Dangerous and a little scary, he told me the safe zone for CD3 is less than 10%, so we are shooting for 90% healthy cells.  I am hoping for a trending down number, like the 20%'s or so. My post-hospital-release CD3 test comes back today with rejection cells at less than 1%!!

"This means the Thymoglobulin worked," Dr Wali says, but I'm really not paying attention at this point, just in awe and excited. Less than 1%?
 

"YAY!" My typical business-like approach to clinic appointments takes a back seat to my ear-to-ear grin of astonishment.

He goes on to tell me that he wont need me to return to the clinic for four weeks...woah! But I will be doing weekly labs and conferring with my nurse for any medication adjustments or unplanned check ups.  I'm looking forward to the break in trips to the hospital but a little nervous about being given such a long leash.  I remind myself that the only thing the doctor goes by in our clinic appointments and at the hospital is the lab work anyway; I can live with this.

What am I going to do with all my new free time and energy? I confirm with my nurse that I am allowed to do normal activities.  I can spend time in a kindergarten classroom, clean bathrooms, teach classes, go to the gym, eat at a pot luck?  Yes. "Live your life. Love your kids," Linda tells me. "You need to build up your resistance - just take it slow and use common sense."

My mind wanders and I imagine myself in my real life, busy again, really working and taxi-ing and changing diapers and paying bills and going to the gym and...I realize I wont be living MY real life anymore.  MY real life will be different than I have ever experienced. I don't know life without dialysis and diabetes, without taking the time to check my blood sugar and run the machine and all the other preventative and reactive measures I never seemed to have enough time for. 

Dr Wali interrupts my inner monologue and we say goodbye, shaking hands like old friends. I almost want to hug him. 

I smile and tell him I hope to not see him anytime soon.

Blurry Memory

Today is my sixth day in the hospital this round. Since surgery, I think I've spent as much time in the hospital  as out.

It's becoming routine. 

• Blood draw at 4:30
• Resident comes by around 6:00
• Vitals at 7:00
• Breakfast by 8:30
• Morning medicine 10:00
• Doctor rounds around 10:30
• Vitals and Pre-treatment at 11:00
• Thymoglobulin treatment from noon-5:00
• Eat lunch before nodding off
• Treatment knocks me out every afternoon for a long nap, repeatedly interrupted by vital sign checks
• Dinner by 6:00
• Walk the stairs/tour the hospital after dinner
• Vitals, evening medicine and blood draw by 10:00
• Try to busy myself with iPad, phone and tv until bedtime

it's predictable, tedious and not productive, but I want to get the benefits of treatment, so it's do-able. I remind myself it's necessary and the end results will outweigh my current frustration.

When the resident comes, he goes over the update as he knows it. He tells me I am going home today, that I'll need to go back on a blood thinner at home, and the blood in my urine is not really bleeding; it's the clearing out of the dead rejection cells.

I listen to everything he has to say, ask pertinent questions, and then remind myself the attending doctor will do rounds in a few hours and he's likely to have a completely different assessment.  There hasn't been a day yet when the resident and the doctor didn't give me conflicting updates, and the attending doctor's opinion weighs heaviest.

When Dr Wali rounds, he tells me I won't go home today; there is still evidence of too many rejection cells in my blood work and this number needs to go down to confirm the rejection is at bay. I grin and hold back a chuckle, amused by the two doctors' contrary updates.

Translation: Two more days of Thymoglobulin treatment to attack the rejection. A blood test taken today will take at least two days to culture to check how well the Thymoglobulin is ridding  the rejection cells. 

"And potential rejection will always be an issue," Dr Wali says. "We will have to monitor lab work routinely to screen for issues."  Ugh. I want for this to be behind me, to be able to hit a fast forward button and jump to a time when my post-transplant complication memories are blurry and abstract because of all the tangible positives I've experienced since.

Dr Wali provides me with my first one: both my kidney and pancreas performance numbers are up, and he believes we are on the right track. 

I really want him to be right.

I'll Take Uneventful

Yesterday and today pass slowly. There are no drastic changes, and I am stable. 

Treatment makes me sleepy, so I rest a lot.

My lab numbers are a little better, but not much. There's still lots of bleeding.

Dr Wali is not concerned, and says they're going to find my baseline normal and target that, but only thing that can be done right now is Thymoglobulin treatment to suppress rejection. I should be able to go home Friday or Saturday, as long as my numbers continue to trend in the right direction.  If my bleeding has subsided enough, I'll also have my stent(from transplant surgery) removed on Friday.

He tells me there's a slim chance I'll have to stay two more days if there's not enough improvement in five treatments. 

So, I'll wait. It's just a few more days, and my kids and my dad will come for our in-hospital Thanksgiving visit. It will be rewarding to see them and revisit everything we are grateful for; there's plenty this year. I'm looking forward to tomorrow.

And I'll take uneventful and boring over traumatic and exciting anytime.

No Surprises

George the resident never returned yesterday, so I save my questions for Dr Wali today. 

Dr Wali starts with good news - lab results confirm there is no infection. Yay!

The rate of blood in my urine has not yet slowed. Dr Wali lets me know the ultrasound says it is not caused by my previous biopsy, simply that the blood thinner I was taking has been making my blood too thin and causing excessive bleeding. It should slow down soon as the blood thinner was discontinued Sunday, and they are going to continue monitoring the thin-ness of my blood while I am here. Today's results are the thinnest yet; its time for scales to tip in other direction

My elevated white blood cell count and pancreas numbers are believed to be caused by more extensive rejection, and treatment has already begun for this. Dr Wali tells me we'll be able to gauge the effects of the treatment, the potent Thymoglobulin, within a few days of treatment.

"So, how long will I be on Thymoglobulin?"

Full rejection treatment takes five days in hospital. Hmmm, this is outside my plan, but I understand it's necessary, and I want all chance of rejection eliminated. 

Dr Wali assures me that my concerns about infection risk are unfounded at this point. I will continue taking preventative antibiotics and I will not have to take crazy precautions once home. I'm glad to hear I can eliminate my images of living life in a bubble. I will be able to interact with my kids and do normal activities, but will need to stay away from anyone sick. Fair enough.

The pancreatic blood clot has not increased or decreased in size. It remains unchanged. Everyone is hoping it would have decreased by now, especially with the previous blood thinning treatment. They will monitor(ultrasounds) while blood thinner not being used. 

Dr Wali ends his update, letting me know there is a slim chance the elevated levels are caused by blood flow issues alone, but no one on the team believes it. I appreciate his honesty. Based on lab work, this can be confirmed/eliminated within a few days of rejection treatment.

My dad asks a good question about if my experience is typical of kidney pancreas patients.

"No, her history is highly unusual," Dr Wali admits. "But not outside the realm of expectations."

None of his update surprises me. I am a little numb but it all seems logical and achievable at this point. I will be in the hospital for as long as necessary to eliminate the possibility of organ rejection. I am disappointed, but the course of action seems obvious. I don't forget, even with this road block and other speed bumps, I am lucky to have received my new organs and I appreciate everyone's proactive efforts.

I receive my pre-Thymoglobulin routine, some Tylenol and Benadryl to decrease the negative side effects of the steroid. The Benadryl makes me sleepy and I steal a four or five hour afternoon "nap." 

I pass the rest of the groggy evening, not really aware of time passing, but it does. 
Tomorrow, with it's own possibilities for challenges and opportunity, is coming.
And I'm feeling opportunistic.

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.