Yay for Efficiency!

This week has been busy and quick. Most important event has been my 4th and 5th IVIG treatments.

I check into hospital Tuesday afternoon at 2:30. I am totally prepared for the long wait before action is taken. As far as environments go, this is not the worst hotel room I've stayed in. I've got a private room, a comfy bed, lots of pillows and an impressive view of the the back of the hospital building.

Room service arrives around 5:30 with my pot roast and asparagus. I enjoy the deliciousness of a dinner I didn't have to cook, the peacefulness of not having to urge my six-year-old to eat the green food on his plate and the guilty feeling that I'm getting away with something by not tipping the food service crew or my medical tech who keeps my water jug ice cold and full.

Pre-hospital gown

Post-hospital gown

I catch a little cable before my mini-get- away is interrupted. It's time to get out of my street clothes and into a gown. The one-size-fits-all gown dwarfs me, my skin gets visibly paler and dark circles under my eyes become more prominent as I change...its like I'm doing a reverse Wonder Woman...Funny how there's nothing more effective at making me look sick than putting on a hospital gown. I unsuccesfully try to get the melancholy, frail-looking, hollow-eyed patient in the mirror to wink back at me.

After the change in attire and mood, it's all business. I get my Pre-medications and an IV in my arm. My immunoglobulin IV is running by 9pm. I'm totally over the frustration of being admitted 6 1/2 hours before any real action is taken.

The Pre-meds take effect, I'm groggy and I sleep soundly, but briefly. The incessant blood pressure cuff squeezes me into definitely-not-asleep mode just as soon as I doze off each time, which feels like every 2 minutes. I realize later that its actually set to retest every 15 minutes.

The nurse informs me by normally super low (90s/60s) blood pressure is high enough to require medication (180/120) and this means the every 15 minute jarring arm squeeze will continue.

Between infusions, I get a 2 hour cat-nap break from the relentless cuff, and my second treatment is set to finish by 9:45am. I eat, wash up, brush my teeth and get dressed while the infusion is finishing up. (Years of IV experience have provided me the uber-exclusive secrets of how to get this done while IV connected.) The agreeable nurse removes my IV promptly, hands me my Pre-written discharge papers(Yay for efficiency!), and I scoot out the hospital doors at by 10am.

All in all, this was a great hospital visit. I saw no doctors, received no bad news, wasn't delayed in leaving, and got a parvo-eliminating treatment to boot!

I start my day, checking off the regular boxes of things I need to get done. I feel slow and tired for most of the day, but by the end of it, removing my arm band and bandage is all that's necessary to make the fact that I spent the evening in the hospital completely transparent.

The Kidney Walk Looking Glass

Yay! On Sunday, we complete our first National Kidney Foundation's Kidney Walk. I proudly wear my "RECIPIENT" label. Impressed by their presence and above-and-beyond generosity, I am amazed at the high number of people tagged "HERO" and "DONOR." I'm especially awe-struck by the folks labelled "DONOR FAMILY," the term typically associated with the family of a deceased donor. 

Theres a local radio station(99.5) sponsoring the walk. After a few songs, the dj hands the mic over to a NKF rep, who starts with "Raise your hand if you have 2 kidneys..."  The bulk of the crowd's hands go up. 

"Raise your hand if you have 3 kidneys..." A splattering of us raise our hands, and the rep pauses and scopes the crowd, his eyes briefly settling on me and my outstretched arm. I feel the eyes of other humans(not numbers like 26 million Americans waiting on recipient list, but real, touchable, concrete I-could-reach-out-and- hug-them humans) in need, people who want to be in my place. Their stares burn a little with a bittersweet combination of envy, hope and inspiration.

The rep interrupts my self-consciousness with a booming "Now, raise your hand if you have 1 kidney!" And all of us possessing multiple kidneys applaud with genuine, whole-hearted appreciation. 

I expect the kidney walk to be positive and meaningful; I am not prepared for the overwhelming rush of heart-tugging emotion that is taking over my typically controlled demeanor.  I wipe away tears and look around wide-eyed at the huge crowd of once complete strangers that has morphed into a big, loud and engaging family bonding at a family reunion.

We stroll around the pavilion, checking out the kids' activities and people watching. I notice all the different team shirts and find myself pulling for each one. I want Little Logan's Dream Team to find a match for Logan, the cutest little red-head who clearly just started walking. He parts the crowd like Moses and the Red Sea, steadily advancing while pushing a folding chair as he toddles along. 

I sincerely hope that Mama Castro gets her transplant soon. Team Infinity looks like they're having a blast with tons of teenagers and their fun, tie-dye shirts. Spiderman & His Amazing Friends have a bunch of kids with them; I'm guessing whoever needs the help is surrounded with love from this motley crew. I wonder about all the other people waiting for kidneys, the ones who don't have a huge team to support them, the ones who are not a visible presence here at the walk. 

So... In very Alice-in-Wonderland fashion, I've been changed by my journey. I hope everyone will take this into account when reading my next few lines...

• If you donated to our team, THANK YOU for being so generous and willing to help anonymous strangers in need.

• If you read my blog, THANK YOU for sharing my experience and supporting me as I grow.

• If you're already part of my support system, THANK YOU for letting me lean on you, for encouraging me when things feel bleak and for being exactly who you are.

• If you'd like to do more, please consider donating your organs, eyes and tissue so that you can live on by helping one of my family members I haven't been lucky enough to meet yet.

Click the link to DONATE LIFE and register today!

http://donatelife.net/

Paying It Forward: My New Normal

I am adjusting to my "new normal," a term borrowed from an old friend. It's April 18, and I have publicly committed to doing "some sort of exercise" every day for the month of April. Thus far, I've succeeded on 16 out of the 18 days...Yay, me!

My new normal means I am not overwhelmed with concerns about parvo, rejection, anemia or the weekly reveal of my lab work. Last month, I would get frustrated at the long delay between blood draw and results. This month, I don't even remember to get frustrated at the wait.

Today, I get last week's results back. All the standard stuff is within range, and...(drum roll please)...my parvo level has dropped from 1,000,000 to 103,000.  That's a lot of steps closer to zero than I expected. Yay, me! Again!

Now that I am overwhelmed with good news, I consciously decide I need to "pay it forward." I search online and find that the National Kidney Foundation's Northern Virginia  Kidney Walk is next week. What a great cause to get involved in!

I sign up both kids and me for the charity walk. We are Team: Pay It Forward. I'd love all the help we can get with our efforts. Here's the link so you can help someone sick get the opportunity for improved health, better quality of life, and a successful outcome like mine:
http://donate.kidney.org/site/TR?team_id=148671&pg=team&fr_id=5552&et=lo-IQd1_1u5AKSSVfG7wzA&s_tafId=75152
 

I am consciously grateful for the gifts and support I've received.

I am consciously impressed with my recent health improvements.

I am consciously aware of my good fortune.

My "new normal" means I will be consciously paying it forward at every opportunity.

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.