Thursday, September 23, 2010

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.

Saturday, September 18, 2010

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.

Tuesday, September 14, 2010

back to the hospital, again

so we'll start with the good news again. the penrose drain came out yesterday and the hole in my neck/chest seems to be healing just fine.

now to the bad news. had some blood work done today and then went in to see the dr h. it seems my kidney function is way high, as is my tac level, and i am in some sort of acute renal failure because of the combined toxicity of the tac and the colistin. so i'm headed back to the hospital as soon as a room opens up for me. the plan is to hydrate me with iv fluids, monitor the tac and creatinine levels and get them under control, make sure there is no permanent damage to my kidneys, and figure out a way to continue treatment for the previous infection at nontoxic levels.

Wednesday, September 8, 2010

Day 8: Discharge

i have just been discharged from the hospital. that's the good news. most of the rest of this is the not-good news.

it looks like the bacteria that made up the abscess was a new one to my body. it is still pseudomonas, but a different strain than was present in my lungs/body before the transplant. and no one has any idea where it came from. one theory was a esophageal tear, but there is no evidence of that. another was that the infection migrated from the left anastamosis when the stent was removed, but the location of the abscess makes that very unlikely. so i am left with a very drug-resistant bacteria, no real explanation as to how it got there, and no confirmation that the drugs i'm taking will kill it. we should know from the lab results if the bacteria is resistant to the colistin i am on in the next few days. but all this is a troubling development, as dr h put it.

so i am home, but i am looking at 6 weeks of IV and oral antibiotics. also i have a small rubber tube, a penrose drain, sticking out of my neck and secured with a safety pin. no joke. dad gets the pleasure of retracting it an inch every two days until it is all the way out. that should take a week or less. meanwhile the drugs and the hospital stay have left me kind of dizzy. not sure exactly what that's about, or if it's going away anytime soon.

in related news, today is three months and one day since the transplant. it's about the time i expected all the major recovery issue to be wrapping up. go figure.

Monday, September 6, 2010

Hospital Day 6

Still in the hospital. I am told I am recovering fine, but I still feel miserable.

The surgery went fine and I now have a straw sized tube sticking out of my neck to continue to drain the fluid in the cavity where the abscess was. Swallowing is fine now, but I have some limited mobility in my neck because of the incision and the bandages. The incision is apparently two inches long. So I'll have another fantastic scar to show off.

Meanwhile, they are hitting me with a kitchen sink of antibiotics because they are still not sure what sort of bug was in the abscess. The sample they took has grown gram negative rods, but they are waiting for further growth in order to identify the specific species and subspecies of bacteria so that they can properly focus the antibiotics. They should know that by tomorrow or Wednesday. Tomorrow I will also have a CT to assess the situation

Mom, Dad, and KC have been hanging out at the hospital with me, but I'm not very good company.

That's about all I've got. Enjoy your Labor Day.

Friday, September 3, 2010

Dad's Hospital Update # 1

Looks like things went about as expected in the OR.  I just spoke with the attending surgeon and he says things went well.  They checked out his throat and windpipe and neither looked like the source of the infection/abscess.  So the cause remains a mystery, we will just have to wait and see what they can identify in the Lab.

At this time he is in Recovery and I expect to be able to see him in an hour or so, then off to an inpatient bed somewhere.  It looks like he will be in the hospital for a few days while they wait for lab results and to see what if any additional antibiotics are indicated.

That is all I know at the moment. 


Hospital update

Surgery is scheduled for today, Friday, at about 2pm. I spoke to the surgeon this morning. They are going to put me under, do a bronchoscopy to make sure nothing was missed in the lungs; do an endoscopy to see if there is any infection in the esophagus or the upper GI tract; and then, most likely, they will make an incision in my neck and go in and drain the abscess.

No surgery is without risks, of course, but one of the residents did describe this as "child's play" compared to the transplant. Though this surgery is complicated by my post-transplant immunosuppression. Not sure how long the surgery will all take, but it looks like I'll be in the hospital a few days recovering and I'll probably leave on more IV antibiotics. Hopefully everything goes smoothly.

Still no idea what caused the abscess, but they may be able to determine that based on what they see inside.

Thursday, September 2, 2010

Hospital holiday

So since my plans for the long labor day weekend seemed like too much fun, I decided to just have myself hospitalized instead. Otherwise, I might enjoy myself a little too much.
If you've been keeping up, you can probably guess that the CT Wednesday morning did not go terribly well. They found some sort of abscess in my mediastinum that is excerting pressure on my esophagus and trachea, and displacing my esophagus slightly. Hence the swallowing problems ive been experiencing. The abscess seems to be a pocket of fluid, about 3x5 cm, though they cannot determine the nature of the fluid and are not sure if it is infectious. So the solution is to go in and drain the abscess and test the fluid to see what we are dealing with.
And that is where the fun begins. I'm on an interventional pulmonary service, and so far they've consulted with interventional radiology, cardiothoracic surgeons, and the ENT team. No one seems particularly excited to tackle the problem. CT Surgery is deferring because their procedure would be the most invasive. But ENT insists that the abscess is too far down and out of their specialty range. And IR doesn't think they can get at the abscess because it is blocked by lots of blood vessels and major arteries. So by default it looks like it's going to be cardiothoracic, though they are consulting with other ct surgeons to determine who should have a go and how best to attack the abscess.
So, having checked into the hospital yesterday around 4, ive been here 20 hours, seen about a dozen docs, and there is still no real plan. Basically I'm just sitting in my lovely hospital room with it's shitty tv waiting to hear back from cardiothoracic. They may schedule something for tomorrow or maybe not untill next week. If they push it back to next week, I will probably insist on going home for the weekend, but we shall see.
I'll keep you posted.