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.
Tuesday, October 12, 2010
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.
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.
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.
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.
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