Wednesday, March 7, 2012

Day 49-50: Change

Today was supposed to be a day off. So far, since I've gotten out of the hospital, we've managed to maintain a Monday-Wednesday-Friday schedule at the Stem Cell Transplant Clinic. I go in, they check all my blood counts, and then they give me various infusions, depending on what I need.

Several things, however, have come up ... well, two mostly.

The first issue was a rash that seemed to sprout immediately over my back and chest Friday. It then spread to my arms and legs over the weekend.

On Friday, they gave me a steroid cream that has been treating the rash quite effectively.

On Monday (yesterday), when we went back in for our scheduled appointment. The doctor talked to me very briefly about the rash, and then told us about a treatment called Photopheresis.

He didn't stay very long, and it seemed clear to me he'd already talked about my case. There are a team of doctors that handle the transplant patients. One in particular might be assigned to each patient, but the whole team talks about each patient's issues. Photopheresis was something that was already on the doctor's mind. He told us he was thinking about it, and he'd get back to us. Then he left, and we could hear him go directly to the phone to continue talking about it.

We went home, expecting to hear more on Wednesday morning because we haven't been going in on Tuesdays.

They called us in this morning, however, to tell us that my "CMV"e; count is over 2,000. CMV is a virus that about 70% of us have, but it causes no problems unless your immune system becomes compromised. At that point, the CMV can cause some nasty problems, including pneumonia, and is a potential killer. When it jumps over 1,000, then it's time to get some help.

They have several treatments for it, all very successful. For me, they opted for a medicine called Foscarnate. I have to get an infusion of it twice a day for a week before they can back it off to once per day and re-evaluate.

That means today is not off ... not at all. It starts with a 9:30 am trip to the hospital for the first dose and a 9 pm trip for the second dose ...

Jump to the next day. It's now Day 50, The halfway point to the 100-day post transplant treatment. Normally, 100-days means that we can go all the way back home to wherever we're from, and we simply show back up in Nashville every 6 weeks or 3 months for checkups.

Clearly, though, it doesn't always work that way. Jerry picked up pneumonia or a respiratory virus of some sort. He's on day 98, I believe, and he's in the hospital having his lungs treated.

It's good to stay well, so I'm sticking to what they tell me to do.

Day 50

I went in this morning, day 50, a Wednesday, after getting those first two Foscarnate dosages yesterday. I couldn't believe how tired I was, and I went right to sleep while they set up the Foscarnate dosages.

By this morning I'd also found out that the Photopheresis is approved.

Step one for Photopheresis would be removing my PICC line, with its three very narrow ports in my arm and replacing it with another Hickman Catheter, a line in my chest and neck with much larger ports to access my bloodstream. They scheduled the installation of the Hickman at noon today, which is very minor surgery, but minor surgery nonetheless.

The PICC line can have three lumens, but the vein in the arm is smaller, so each lumen is connected to  smaller line than on the hickman:

Here's the Hickman. It attaches to large veins in the neck and chest, so all three lines deliver blood better than the PICC line.


Photopheresis begins tomorrow. It's done on a dialysis machine. They hook the machine up to one of the "lumens" on my Hickman Catheter and pull blood out.

Somehow, the machine divides the blood into three sections, and the section with the white blood cells, along with some medicine, is run through ultraviolet light (UV radiation, like from the son). The UV radiation kills the T-cells, which are apparently the cells that cause Graft-vs.-Disease. They then return the whole mass of blood to my body through one of the other lumens.

How many times they have to do this for each treatment is based on my size and some other factors.

Like all of these treatments, it can cause side effects. The medicine they put in the white blood cell portion to help make the UV radiation work right apparently stays in the blood. So after each treatment, for 24 hours, I have to wear wraparound glasses keeping all UV light away from my eyes.

Like I said, this treatment will happen twice a week and last about 4 hours each, along with the twice a day infusions of foscarnate and whatever other things I might need to be given, like magnesium, phosphorus, Neupogen, my daily dose of Micofungen, and any platelets or blood I might be needed.

It will be a very busy next few weeks.

I'll keep you updated.

To My Friends

Tamara and Richard, great strength to you as you head down your very similar paths.

I may be repeating this, but I recently read that if God gives you a tough road, he'll give you big boots to walk it with. That means a lot to me since it was Corrie Ten Boom who said it, and her rough road included a Nazi concentration camp.

We're going to make it, grace will be sufficient, and we can go through this with cheer and with friendship with those health care workers that are pouring out all their effort on us. We can win!


  1. Amen and amen! We should all meet for a trip somewhere when we are all better! It is amazing how circumstance and prayer can unite people who would have otherwise not ever met. Thank you for continuing to share your journey. We are, indeed, going to make it!

  2. Ahh the inevitable rash from "something". Hang in there buddy. You're doing great!