Stormy Path, Sunny Days

I have been out of the hospital for two weeks! After I got my transfusion and infusion combinations, I slowly began feeling physically better than I've felt since Christmas. 

A few days into being home, my nurse gave me the go ahead to "do whatever you want." She told me my body will let me know, and my blood work will show decreasing numbers if the parvo virus gains momentum against my currently effective immune system.

So I'm doing as close to "whatever I want" as real life will allow. During spring break, I take the kids hiking, we go to an indoor water park, my daughter gets to experience a college cafe, and we trek through an arboretum.  

By the end of spring break, we're all exhausted. I have to check my common sense meter as my tiredness initially concerns me, but both kids look way more spent than I feel. Yay! I'm simply tired because...well, it's spring break, we're running around, and I earned my exhaustion. 

Again, I receive inconsistent "info" from my medical team. I left the hospital understanding my next infusion would be this week, now I'm told we will wait and not even test my parvo level until next week. Immediately I want to argue; my self-preservation instinct is strong...but I bite my tongue, reminding myself that I'm feeling not only fine, but good.

When I go to clinic, I am not seen by MY doctor. Another surgeon, Dr Jonnson, sees me, tells me I'm doing great, we'll check on the parvo virus in four weeks(not now) and tells me I'm cleared to return to my nephrologist for continued care(ie transition out of transplant team care).

Wow! 
Is this good news or not? I can't figure it out and I'm flooded with mixed emotions. 

• I feel good...Yay!
• I have parvo and don't have confidence that my nephrologist will be any more prepared or experienced that my transplant team...Ugh.
• Today is my transplant 6 month anniversary and my organs are performing swimmingly...Yay!
• Given my history and the long leash the doctor is proposing, I am apprehensive again...Ugh.

I bounce back and forth in my head, trying to spin everything to half-full when Dr Jonnson leaves. I confirm with my nurse that I can continue doing weekly labs to check status. Yes.  She assures me that if my nephrologist isn't familiar with parvo, the transplant team will follow me until its eradicated. Linda doesn't seems especially confident with the decision either. She tells me she'll share everything with my regular doctor.

I realize I'll need to let go of this safety net eventually. My labs will be telling the story of how I'm feeling. I will continue to check them weekly.

Later that afternoon, Linda calls to say today's lab work is in and a minor med adjustment is required. And...because of the change, I'll need to be seen by Dr Wali, MY doctor, in two weeks to follow up.

I'm embarrassed, but completely aware, of the reassurance this provides me. I don't yet trust my body. There have been speed bumps on my road. I'd like some bump-free time behind me to feel more confident about moving on.

I decide I'm going to use the coming two weeks to get myself prepared for transition. 

I start my pep talk...

The rest of my life awaits. 

I can not be babysat by my transplant team forever. 

I've read that the average kidney transplant lasts 10 years and pancreas 12 years, and I'm only 6 months in. 
I've got plenty of outside-the-hospital living to do.

...Now, I just have to believe myself and make it happen.