Monday, August 31, 2015

Saving Tyrion Lannister: The Story I Didn't Want to Tell

This is not the story I wanted to tell, nor is it the way I anticipated this story to end.

As some of you may know, Tyrion lost his valiant battle with kidney disease on June 26th, 2015.  Even though it has been two months since his passing, I wanted to document the end of this chapter of our lives and give those who supported us so much during those long 8 weeks a chance to know the whole story.  I've had this written for quite some time, but never felt ready to share it until now.  


While Tyrion was never technically “well” again after we left U Penn, I truly believed he would turn it around any day.

The week leading up to his passing, he became increasingly lethargic, but still showed us burst of personality, once lunging after his nurse’s chicken one day while she ate lunch, a pretty classic Tyrion move.  Everyday, I’d hope for the call that where his doctor would say that he was looking great and his labs were within range. 

It never happened.

After a month of waiting, we received his kidney biopsy (from his old kidney) back. 

Tyrion had an extremely rare disease that only one cat has been known to have in the world; a collagen defect called collagenofibrotic glomerulopathy.  A defect that was causing the two original kidneys he had to stop functioning and become necrotic. He was literally one in a billion.  One in a billion to us as well. 

There is little literature on feline treatment, in fact the one cat that had this (which was not in the US), was euthanized by his owner shortly after diagnosis.

There was limited research on human treatment as it had only been diagnosed in about 40 humans.
No one really knew what to do or how to treat him. 

His doctor (a guru in many ways) was consulting her guru, the pioneer of feline kidney transplantation about how we should treat, but the story was always limited.

We tried a last ditch antirejection medication, but it just wasn’t enough.

Not only was Tyrion’s new kidney not functioning the way it should, he was severely anemic as well.  We were stonewalled because of that.  Since he had received (by our count) 14 blood transfusions from multiple cats, he became incompatible to any of the blood that they had at their well supplied blood bank.  They were administering an agent which helped to increase red blood cell production, but it often takes several weeks to work.  It was time he didn’t have. 

We left Texas for Mexico on the 25th (to get married) knowing the decision that was likely going to have to be made, but still not able to make it.

On Friday the 26th, after receiving a phone call that he did not look well, wasn’t eating with the spirit he once had, we decided that was his way of telling us it was time.

It was incredibly painful to know that we would not be with him, but he was surrounded by many of the staff at U Penn who had cared for him during the seven weeks he was there.  We talked to him over the phone and all told him how much we loved him.  Our voices were the last he heard.

Losing a pet is never easy, but there was something so special about Tyrion that makes it even harder this time.  Maybe it was because he was so young.  Maybe it was everything we put him through.  We can move on knowing that we did everything that could possibly be done, was done for him.  We went to great lengths, probably more than most pet owners would, to save his life, but came up empty handed.

When we came home, I think we all knew there was an emotional hole that nothing would fill.  I had been planning on coming back from our wedding trip, turn around and head to Philly to bring Tyrion home, but it would not happen.

I know the loss did not hit me as hard until we returned home and settled in.  The wedding (which was wonderful) and our families helped take our minds off of it somewhat. His absence was loud.  There have been days where I am still overcome with grief.  

I've come to hate Fridays.  Fridays bring things that I don't want to deal with.  Tyrion became sick on a Friday.  He died on a Friday.  We received his ashes back on a Friday as well as his final autopsy report.  In one way, it's like he is letting us know he lives on in our heart, but in other ways it just kind of sucks.

Tyrion died because of plain old rejection.  It had nothing to do with his collagen defect.  There was proof that the disease process had not returned to the new kidney.  It left us thinking that maybe he would have done better with another cat's kidney, but who are we to say that would have been best?  His team made the best decision with what they had presented to them.  We couldn't have asked for better care for him, I wish we could have asked for a better outcome.  Again, Tyrion beat the odds, just in a bad way.  Studies show that only about 7% of cats who receive transplants fail to respond and never leave the hospital.

My hope going forward is that Tyrion’s legacy will live on.  As I mentioned, we had his doctor perform an autopsy (which I normally would have said no to) in hopes that he could go on to teach other veterinarians about this rare disorder so that maybe another kitty can be saved.  The studies could also potentially help humans as well, as feline medicine closely mimics human medicine in so many ways. His primary vet, Dr. Cleroux, also sent me a picture of Tyrion's dialysis machine, which was named in his honor.  A machine that he was first to use.  

She also added this....

"Tyrion was certainly a fantastic cat with such a dedicated family. I feel that he has changed all of us in his own way. Every person involved with him directly or peripherally will remember his path in their life. He has made us not only better doctors, but better persons. I feel that his life was meant to change the ones of others and has certainly taught me to never give up."

A few weeks ago we received his tiny crown in which he was to wear home, along with his ashes and several kind messages from his doctors, nurses and other U Penn staff.  We cannot say enough about the hospital where he was cared for.  I know I've said it before, but they are the best of the best.  Their compassion towards animals is immeasurable.  It is very apparent that none of them are in it because of the salary or the glamour.  They work endless hours and gave Tyrion so much care, love and attention.  

So I end the story here.  

Tyrion will never be forgotten.  We still talk about him often...the funny things he did, how we think he'd go crazy over a new toy or how he used to sleep in a certain spot in bed every night.  He will not only go on to help other kitties, but he saved several in the process, his "brother" Jaime included.  

We loved him so.

Wednesday, August 26, 2015

A Tale of Two Trails - Part 2 Whispering Pines

Whispering Pines was part 2 of a 5 series trail race that I hope to complete this year.  Race 1 was Possum Kingdom.  I went into this race pretty much untrained (stupid) and thinking, 'how could this be any more difficult that the last one'? was.

I was risin' and shinin' a bit after 4am to meet my friend Aimee for our epic road trip to Tyler State Park, which was just about 2 hours away.  Because I'm not a morning person, it *was* kind of cool to see the sunrise!  It was going to be a sunny day.

We met more friends at the park, including Pam, who was running her first trail race!  I chose the 50k, so I was able to run her entire race with her.  Even though that first loop took us about 3 hours, it flew by as we chatted and laughed the entire time.  We cracked up every time we'd come to something like this...

and felt as though we were in an episode of 'Survivor' at times.

Pam finished her race strong!  She collected her honey bear & then stayed a little while to cheer the rest of us on.

I grabbed a few snacks (trail food is the BEST) and headed out for my second loop.  The 50k (about 31 miles for the non-metrics) was a total of 3 loops, so it was nice to know what to expect the second and third time around, booby traps and all.  There was a hellishly steep climb within the first mile or two.  It was probably the worst of all the hills.  Unlike Possum Kingdom, where the hills were steep and rocky, these climbs were long and gradual.  Tiring.  Theyy were the kind that when you got to the top, you really felt as though you kicked some a$$ (or maybe it was you had your a$$ kicked)...maybe both!

what goes down, must go up
The woods were beautiful.  I almost felt as though I were in Minnesota.  Even though the sun was out and it was really warm and stale in spots, overall the trees kept everything shady and semi cool. Tolerable.

The trail itself was really soft, pine needles padded most of the trail.  Unfortunately, we had a really wet spring and there were still some mud pits to contend with.  Again, having gone around once already really helped with figuring out how to negotiate said mud pits.

There were two aid stations along the course. All stocked with cookies, rice crispy pars, potatoes, chips, soda.  All the junky food you could imagine!  When you run 30+ miles, any type of diet is off. This tribe also has the *best* volunteers ever.  They help you with whatever you might need, from simply holding on to something, to filling the water reservoir in your vest.

The second loop was strong for me.  I picked up my pace a bit, knowing that because I started 30 minutes late with the 10 milers, I had 30 minutes to make up so that I wouldn't miss the cut off.  Luckily, I finished that second loop with more than enough time to spare.  This race happened to be in the middle of our tragic journey with Tyrion as well.  Sometime around mile 16, I had gotten a call from his weekend vet saying that he was doing phenomenally well.  If there were anything that could've put a spring in my step at that moment, that was it.

For not really training for this, I don't recall ever feeling fatigued.  I felt great the entire race.  I think part of it due to the fact, that for once, I didn't take off from the start too fast.  Once those last 5 miles rolled around, I kicked it down and ran most of the way to the finish.  It was getting warm out and I was starting to feel like I might be getting a little dehydrated (despite all of my attempts to negate this).

A few miles before the end, I spotted the Roxie, the trail running wonder dog, not too far ahead of me on one of the switchbacks.  At some point I almost caught up and finished just behind her and her owner Harold.

Once I saw the banners for the third time, I knew I had this one in my pocket.  It probably wasn't my best effort, but I felt good the entire time and I will take that over a faster race any day.

It was my turn to get my honey bear, change into some dry clothes and just sit down!

My friend Faith, whom I ran the Dallas Marathon with, finished her first 50k just a bit after me. Aimee finished her race feeling great a little after Pam.  Monica was one of the awesome volunteers that day.

MRTT'ers - me, Faith, Aimee & Monica

I loved this race.  I loved Possum Kingdom as well, but for different reasons. Whispering Pines seemed so much like "home", like Northern Minnesota (except warmer); peaceful.

There is just something about running in the woods...both alone and with friends.  I've never felt so completely immersed in my thoughts, without distractions.  I feel like some of my best ideas come from thoughts I have while I am out on the trail.  It is completely addicting.

Race three of the five part series will be a night race....details coming soon.