Ben Chernicoff's Blog

good news everyone

Yesterday's heart biopsy results are in and there was no sign of rejection. They've made some adjustments (downward) on my medicines and I will have another biopsy in two weeks. This is really good news!
-Ben

Oh, and my voice is back too. It happened very rapidly since about Thursday.

Home again

I came home yesterday afternoon. It was a less triumphant return than after my transplant, but felt even better to be home. It was the longest, most boring, most uncomfortable 6 days ever. They just don't seem to feed me enough or manage my diabetes well and I lost weight and came home feeling drained. It feels so good today to be pigging out, closely managing my blood sugars, and getting so much more exercise.

As far as the treatment goes (or went)... they could tell from the lab work that it did knock my immune system down which should end the rejection of the heart, but they won't know for sure until the next biopsy which, I believe is in two weeks.

home later today

They are going to do an ultrasound of the heart and a chest x-ray and then get me out of here. Hooray. I am hospital'd out.

hospital update

Been a while since I've posted. I've just been hanging out trying to keep myself entertained and get some work done. I feel great and get an IV treatment once a day. Hopefully, this will do the trick, but they won't know for a couple of weeks after I go home and they do another biopsy. The plan is last treatment Sunday, keep me overnight and have checked Monday morning. If all is good, I will go home.

People have emailed me pointing out that the point of a blog is to share emotional insights, etc. I really just set this up as an easy way to do mass status updates. I guess this whole experience could be motivational to others. I don't think I will blog it, but I will start to write about my experience and stick it on a webpage as it progresses.

We've had a setback

The results from Monday's biopsy are in and the rejection they saw in the last one is still there. They have asked me to come back into the hospital for 5-7 days of IV drugs to get my immune system knocked down a notch or two. They think once they get it where they want, maintaining it will not be a problem.

Finally home

Well everyone, I am finally home! It didn't really hit me until I was walking out the door of the hospital...just how large an ordeal this all has been. Two weeks ago I walked in those doors to have my heart removed and another sewn in. And today I walked out feeling nearly as well as I did last fall before any of this happened. It feels so strange to simply walk around this apartment without schlepping all the medical equipment. It feels good. Here is a video I threw together of the trip home:

picture from yesterday

Here is a picture my brother took yesterday:

This afternoon

My doctor just stopped by and he is pretty convinced we had a spurious lab result. Yesterday's prograf level was suddenly 3 times what it had been reading. Today's was right where it was supposed to be. If tomorrow's is good I'll be getting out of here.

Someone screwed up

I may not be going home today and we haven't even made it to the xray yet. They have been taking daily blood draws and checking the concentration of the various medication in my system. Well, someone screwed up yesterday's blood draw and they are trying to decide if they feel confident sending me home without a good last reading. Today's blood draw results won't be ready until later, so hopefully it will be right on the money and they will still let me out. One day isn't that big of a difference in terms of when I get out of here and on with my life, but I flew my brother in and he goes home Sunday, so it would be nice to get to hang with him at home for a while. I'll keep you updated.

Other than that, a really rough night as far as back pain. I have lost a lot of muscle during this recovery and my back has had no exercise when you consider how all the surgery on my front side has limit my motion over the last 12 days. Anyway, the muscles down both sides of my spine are just out of shape and getting knotty. I received some strong-ass synthetic morphine every couple of hours as this was the only thing that would let me lay down. They would give me an dose by IV which works immediately and then I would go walk a few laps around the ward which does a lot to release the tension in my back. It really helps and I would get back into bed only to wake up 2 hours later in just as much pain. Ick. They brought me a hot pad this morning and that was some pretty good relief, but really just walking it off has been best. Well, that and the hydromorphone.

Thursday update

They came around and remove my final drain tube today. If tomorrow morning's chest x-ray still looks good, they will send me home in the afternoon. Here are a couple of pics from today:






Also, I have been getting questions about visiting, etc. People are welcome to visit once I am home, they just can't be sick. My biggest issue to deal with over the next year will be to stay infection free. The anti-rejection drugs really suppress my immune system. It's a necessary evil. This next week is already booked, but let me know about when you want to come out.