Grateful for awesomeness…

Something I haven’t talked about a lot online yet: I’m currently going through the evaluation process to get on the kidney transplant list. After years of not needing to be on dialysis, my kidney disease has almost reached the inevitable point of needing dialysis and, hopefully, a kidney transplant. Could be a year, could be two, but the process has begun. More info on that will come later. In preparation for that, I have been undergoing the evaluation process to determine if a transplant is feasible. We should know the results of that in a couple weeks.

This post, though, isn’t about me, it’s about the whole Kidney Transplant team at UofM hospital: they have been fabulous. Every single person I’ve dealt with, as I go through this evaluation process to determine if I can be listed on the transplant list, has been really wonderful. Helpful, patient with my questions, compassionate and personable.

I say this because I think awesomeness deserves to be recognized. This process, which has the potential to be monumentally daunting, is made more understandable and less scary by how good these people are at their jobs and how much care they take with each step. From the giant binder of information (that is SO well prepared), to the many phone calls checking in on me confirming appointments and easing any concerns, I (and I think Jeanne) have been put much more at ease by the reassuring calm and open discussions with the many staff people we’ve talked with.

It’s really energizing – seeing how much they care about getting it right, and helping each person to have every resource, every piece of information they need, and a clear path into and through this complicated and scary thing.

Today I sat through another several hours of tests, and the thing I realized is that everyone that I was working with, again, was operating with an amazing ever-present sense of empathy. How much information did I want? Or how little? Was I comfortable? Was I anxious? Was I clear on what was happening and why? What could they do to help?

As I was realizing this and watching them work, I started thinking about the season at Williamston Theatre (which is BASED around the idea of empathy this year), and how much the practices of empathy and compassion are able to change the world. We can see examples of it all around us, just as we can so clearly see the examples of people behaving without these traits.

So, this is a long way of working through this, and saying THANKS to the amazing transplant team I’ve been working with. We’ll know soon enough if the process bears fruit but, in the meantime, MY world has been made a little better by these people. And I’ve been reminded of how I want to impact the world as well.

Not bad for a cloudy Tuesday morning!

Wednesday gratitude

A couple of weeks ago I had the pleasure of visiting the hospitals that saved my life! It was, on April 1st, the 2-year anniversary of me getting out of the hospital after my long bacterial meningitis/ARDS/coma adventure. Jeanne and I took gift baskets and thank you cards to the ICU of St. Joe’s in Chelsea and all 3 floors I was on at the St. Joe’s of Ann Arbor. It’s nice going back to say thank you!  

And today, I’m back! Just for part of the day. Having some vein surgery done on my arm – one of the many little after effects of that whole hospital stay – should be back on my feet in a day. Glad to get it done, my arm has been swollen and sore, it’ll be a relief to have that taken care of!

The whole thing, though, has me marveling again at how fortunate I’ve been during this last few years. Modern medicine amazes me. Today, they’ll go in and fix a tiny collapsing vein in my arm with super cool science and technology!  

So – here we go! More things to be grateful for. Doctors and nurses who are good at their jobs, people who care, my wife and kids and friends and family.  Scientists and engineers who invent tiny little microscopic cameras that travel through blood veins! Oh, and Netflix – which has every season of Deep Space Nine for me to watch while I have to be in bed for a day! 🙂

Thanks for reading – Happy Wednesday! I hope you get the chance to reflect on some things to be grateful for today. 

  

An Odd Anniversary

It was one year ago today that I collapsed at home, and my wife rushed me to the hospital. We didn’t know it at the time, but bacterial meningitis was attacking and swelling my brain, and the 19th of January started a hospital stay that wouldn’t end until almost 3 months later, on April 1st. I’ll be posting a couple more anniversaries like this, because it’s important to me that I don’t forget.

So. A year ago. It’s so odd. I sit here in my bedroom right now, typing this, and I vividly remember collapsing on the floor *right there*, just a few feet away, in the doorway to our bedroom bathroom. Scared the hell out of our teenagers. What a difference a year makes.

So much stuff to celebrate today. I’m feeling MUCH better than I was then. I’m back to work now, spending a lot of quality family time, working on several projects I love.

In a couple of weeks, in fact, we open The Best Brothers at Williamston Theatre, which I’m in! I haven’t talked about it here, but it’s a fabulous script, and I’m thrilled to be in it with my pal John Lepard, being directed by the wonderful Lynn Lammers. Because of my health I was a little unsure of taking it on, but I’ve been blessed with a good recovery (among other things!), and the process has been terrific.

Here are some pictures from yesterday at rehearsal:

2015/01/img_6375.jpg

2015/01/img_6371.jpg

2015/01/img_6369.jpg

2015/01/img_6359.jpg

Today was a great day to celebrate being alive! I got to go out to breakfast with my wife and kids, did some script work to prep for rehearsal tomorrow, recorded a podcast, and relaxed. A fantastic day.

So, on an odd anniversary, let me take a minute to say a couple of things: First, thanks for reading this. Second, take a minute to think about a handful of things you’re thankful for. Some of those, I expect, will be the people in your life. Remember to tell them. Don’t wait. Tell them.

And celebrate everything!

Hi Blog, We Meet Again…

Well, it’s been 4 and 1/2 months since I’ve written here.  This will be a long entry about why. 🙂

Many of you who read this blog regularly already know, but for those who don’t, from January 19th to April 1st I was in the hospital.  The last post on my blog leads right into this one, because I was writing about fighting illness, and 2 days later I collapsed and was taken to the ER.  It turns out that some of the problems I was having were due, at least in part, to bacterial meningitis.  While in the hospital, the bacterial meningitis caused my brain to swell up, and my breathing trouble turned into pneumonia.  The pneumonia turned into Acute Respiratory Distress Syndrome, and they wound up putting me in an induced coma state, which I was in for 4 and 1/2 or 5 weeks.

Waking up was a slow process.  I started to wake up around the 28th of February, my wife Jeanne says, but there was about a week or so where I was awake but not very responsive, but slowly started asking some questions and responding to some questions with witty one-liners , but shortly after that I got a secondary infection that wiped me out for a couple more days, and I don’t really have any clear recollection of anything until early March when I started to become a little more lucid.  Once they’d determined that I hadn’t suffered any brain damage from the bacterial meningitis they started me on a series of different rehabilitation therapies (physical therapy, occupational therapy, speech therapy, swallow studies, things like that) which I did for a while in the acute care ward, and then moved to the rehab ward for a couple more weeks of PT and OT.

Shortly before being released back into the wild on April 1st, Jeanne helped me post on Facebook – what I wrote is here, if you’re interested.

Once I got home, I spent a month going to out-patient physical therapy, which I finished in early May.  I’m still going to dialysis 3 times a week, due to the damage my kidneys took during my illness.  There’s still hope they could rebound and heal themselves, but right now we have to move forward as though I’ll need dialysis forever, just to be safe.

SO.  Life has changed a lot in the last 4 and 1/2 months since my last blog post!  🙂  Now I’m doing physical therapy exercises at home and lots of walking to try and get my strength back.  I’m almost to the point where I don’t need a nap daily.  I’m using my cane for walking less, and soon won’t need it (although everyone wants me to get a cool cane with a sword in it!).  My kids can still beat me in arm wrestling, and we’ve had to buy me new pants because I lost 47 pounds in the hospital!  Still, life is darned good.  I’m slowly starting to do some work back at the theatre, getting better at the new diet I’ve got to live by, and trying to gain some muscle weight back!

This has been the most amazing experience, even though there is a huge part of it that I have no recollection of at all.  (I remember Jeanne taking me into the Emergency Room on January 19th, and I threw up.  The next clear memory I have is waking up in early March with people looking down at me, wondering what happened.)  During the time I was down, my family and I received the most amazing amount of support and love from friends and family… it was, and continues to be, simply overwhelming.  Cards, food, messages, chores, errands, money, prayer quilts, helping with kids and their travel needs, the list goes on and on.  My friend Emily started a thing called “Team Tony”, and created a t-shirt with my image on it for people to buy as a fundraiser to help my family cover medical bills.  That took off and, amazingly, 693 shirts were sold and $14,000 was raised.  Everyone started posting pictures of themselves wearing their Team Tony shirts, and it was the most wonderful, uplifting thing in the universe to wake up in the hospital and have my wife and family share this amazing outpouring of generosity and love with me.  I truly believe this massive positive energy helped me recover and heal, and it’s been the most life changing experience in the world – I’m so incredibly grateful.

So.  This is the longest post ever.  I’ll end it here.  But I’m hoping to be posting a lot more regularly – this experience has been such an eye-opening journey.  I have so many people to thank, and so much more I’m looking forward to sharing about it and, to be honest, I’m still processing it all.  Not a day goes by that I don’t re-realize how lucky I am to be here right now, and how all of this time with my family and friends is a gift that I almost didn’t get.

It’s good to be back.