Postscript from mom

 

WEDNESDAY, MARCH 13, 2013

POSTSCRIPT by Mom

 

Christopher returned to work at Audible in November 2010, at first part-time, transitioning to full-time effort through the next months.  In February 2011, he moved into his own apartment in Jersey City, a 3-flight walk-up, walking distance to the PATH train, restaurants and friends.  He played.  He walked.  He worked.  He wrote.  He read.  He fell in love.  He enjoyed life.

 

During the summer of 2011 complications began to occur.  Lung infections occurred intermittently, requiring IV antibiotics. The post-transplant gastroparesis became severely problematic, compromising his nutritional status, and necessitated surgery (pyloroplasty and fundoplication).  A jejunostomy feeding tube was surgically inserted in March 2012.  Meanwhile hospitalizations and rounds of antibiotics became more frequent.  On April 10, 2012 he was informed by the Transplant team that there was nothing more they could do.

 

Christopher came home and his family and friends prepared to say good-bye.  We were then introduced to a nursing team that became invaluable—a nurse, social worker, and physical therapist who became an indispensable and integral part of our lives.  During the next months family and friends filled our house, sharing time with Christopher, playing scrabble, watching movies and soccer games, chatting about fun-times, updating activities at Audible, discussing books, enjoying tea-time and his pour-over gourmet coffee, sharing meals, laughing and crying. Morning routine included his daily dose of soduko and catching up with the news on his iPad while enjoying a pot of his coffee. When able, he wrote, working on a manuscript.  By January 2013 his status had deteriorated significantly. Episodes of severe breathing difficulties occurred more frequently, morphine requirements increased, fatigue was overwhelming, appetite decreased.  On February 1^st, in the company of his nurse and his mom, he announced “I am done”.

 

On February 20, 2013 at 11:05 pm, with his mom and dad, two brothers, sister-in-law, nephew, and best friend close by, Christopher took his last breath.

 

Christopher’s cremains (he elected to be cremated because he had had enough poking, prodding and injections in life, and wanted no more in death) were buried on February 25, 2013. 

 

We thank all our family and friends and Christopher’s many friends for their thoughts and prayers as we walked through this part of our journey with Christopher.  The wake was indeed overwhelming.  So many people…waiting an hour outside in the cold on Sunday afternoon.  Friends from grammar school and high school, old teachers, friends from Georgetown, some coming from Colorado and England, people from Audible, including the CEO and the guy who hired him initially, plus the audible “tea ladies” and his close working cronies.  His doc from HUP.  Of course, his nurse here and the social worker who were such a tremendous part of our lives these past months. And our wonderful family.  Such a tribute to Christopher, a testament to how many lives he touched.  The funeral was the same, overwhelming with people.  The service was inspiring, the priest doing his homework, talking about Chris with the passion that Chris had, even though he did not know him directly.  We had a police-escorted caravan of 50 cars driving the 32 miles to the cemetery.  The repast was full of tears not yet spent, but also laughter as stories continued.  Christopher has a huge collection of books, most of which he had read.  He was categorizing them electronically with the intention of distributing them to friends.  So  we brought about half of them to the repast and spread them out on tables so friends could take those that they wanted.  A wonderful tribute to Chris and a joy to all his friends who could take home a piece of Chris.  As the people left, books in hand, each one had a story or a reason for taking the selections they did.  Christopher did indeed make a mark.

 

Christopher is now at peace, breathing freely.

 

the long-awaited ct

I headed off to HUP today for the long-awaited CT scan along with a doctor's appointment. In case it's been so long that you've forgotten, the CT was to check that the infection from September (the one that had to be surgically drained and landed me in the hospital twice) had fully abated. If not, I'd be back on endless weeks of IV antibiotics with some harsh side effects that already put me into acute renal failure once. Not to mention, it would set this whole recovery thing back quite a few steps, yet again. So as far as I was concerned, the stakes were pretty high: fine and clear; or 6 weeks of misery that may or may not solve the problem.

I'll not keep you in suspense. The CT went well. The infection is completely gone as far as they can tell. I have some inflammation around my sternum, but that has been showing up in CTs since the transplant and hasn't gotten any bigger. Also, it looks like the persistent-if-slight pneumothorax is all but gone. So, all good news.

Also had another lung function test, and the numbers were stable, improved just a tiny bit. The stomach is still an issue, and doesn't seem to be improving much despite a new med, so I'll just have to wait it out, I suppose.

That's about it. Back to the doc's in a month to make sure things are going smoothly, and I'll see where I go from there.

goodbye, philly

this past tuesday i had yet another doctors appointment, just to check in after the hospitalization. everything looked ok, though my creatinine was still a little high. but my lung function was up to 53%, which is a small but significant increase from prior to all the infection drama.

now i'm back to a sort of waiting game. i've stopped all the antibiotics, but no one is totally convinced that the infection has been completely erased. so on october 12, i'll have one more CT scan to check everything out to be sure the infection has gone the way of the dodo. if it resurfaces by then, not sure what we're going to do, since the one antibiotic that kills it also knocks me on my ass and obliterates my kidneys. so here's hoping the infection is gone completely.

after the appointment, dad and i packed up the last of the philly apartment and turned in the keys. i wasn't too sad to say goodbye, frankly. it was a nice place and all, but it's been a rough few months and it's a lot more comfortable to be back in nj with the parents around while i re-rehab. the past few weeks negated a lot of the work i did to get back into game shape, so i'm practically starting from square one in terms of regaining my strength and putting back on the weight i lost (again) from this most recent ordeal.

so anyway, i'm back in nj for good. staying with the parents again, for now. still trying to get up and running.

Hospital stay over, for now

Day 5 in the hospital and I am waiting for my discharge papers. It's been an interesting stay though.

As I said, I got admitted for acute renal failure that we all assumed was a result of the colistin I was on to combat the infection that I had surgically drained on my previous stay. So when I got here, they stopped all the antibiotics and started pumping me full of IV fluids in order to flush out my kidneys. Slowly but surely, my kidney function has been trending positively and is on the verge of being completely normalized. So that's good.

While they were waiting to see if the fluids were working, I had an ultrasound of my kidneys, to make sure there was not a physical problem with the kidneys that might be causing the renal failure. As expected, everything there was normal.

So into the next test. Since they had stopped the antibiotics, the doctors wanted to be sure that there was no infection growing where the abscess had been, so they ordered a CT of my chest and neck. Well the area where the abscess had been looked improved, but they saw something they didn't like around my aorta: either a hematoma or an infection. Either one was likely the result of the abscess surgery, but while a hematoma would not be a big deal and would heal on it's own, an infection would be a major problem, especially since the antibiotics needed to fight it had done a number on my kidneys. So, more testing to figure out if it was an infection. Normally, they would have ordered a CT with contrast, but they didn't think my kidneys could take the contrast in their current condition, so I was headed to nuclear medicine.

In nuclear medicine they did a tagged white blood cell scan. Basically, they took 50ml of blood from me, separated the white cells, and tagged them with radioactive material. Then they reinject the white cells, wait a few hours and scan my chest to see if the white cells cluster anywhere. The idea is, since white cells attack infections in the body, the radioactive white cells would head for any infected area and you'd see a cluster of white cells on the scan. So if the white cells clustered around the suspect area of my aorta, that would mean that the abnormality on the CT scan is in fact an infection. For once, I dodged the bullet. The WBC scan came back negative for infection. In fact, the white cells did not even cluster around the old abscess region, so presumably there is no remaining infection there. The conclusion is that the spot on my aorta is a hematoma and the spot around the old abscess is just some inflamed tissue.

So the plan now is to discharge me today, without any antibiotics to make sure my kidneys can heal all the way. And then I'll have a follow-up CT with contrast in a couple weeks to make sure everything is a-okay.

I'll be heading back to NJ and moving out of the Philly apartment. And hopefully things will go a bit more smoothly now.