Wednesday, April 1, 2009


I was shocked by today's clinic appt.

I'm just going to put it out there first and then the details.

Shawn's FEV1% was fucking 35%. I almost shit. He brought the copy into the exam room where Sara Lou and I were waiting while he did his PFT's and the first thing he said was "That's probably not right, right?"

It's a 47% decrease since Feb 3rd. He was @ 65% then. I asked him how many times he took them and he said three times. I told him that it was most likely accurate. I was so shocked by it. I told Sara to go hang in the waiting room because when the doctor came in she was going to check his hernia. I wasn't lying but he certainly wasn't going to be naked.
I was afraid. I was coming unglued and I didn't want to freak her out.

I was afraid that the doctor was going to see those numbers and then come in and deliver some harsh news.

As we sat there and I looked at the numbers, I kept thinking, 'Don't freak him out Tina, Don't you dare freak him out !'

My logical mind had immediately checked out and I was running on fear and disbelief. What the hell? This isn't supposed to happen. Not to Shawn. Not to Shawn because he is a superman, my superman. My Super Transplant Man.
I thought what the fuck it's April Fools Day, of course another pseudo holiday like Valentines Day, New Years, Christmas Eve ugh.
What is with him and these special days? Every frigging one starting with transplant has been eventful.
I tried to make my head work properly...I tried to switch into logical nurse mode but I was really having a hard time. I'm sure it was only a few minutes but it felt like an eternity. I wanted so badly to soothe myself and Shawn too.

Shawn is the one who actually snapped me out of it and got my brain moving in a more productive direction. He said something to the effect of "Babe, I told you I feel like shit when I need to be opened up again, I can't breathe, this just says it on paper, but I knew I guess."

He took on the "I told you so" look and probably was thankful for the validation. He had a damn good reason for feeling short of breathe. That poor bastard.

So all his labs are excellent, his chest x-ray is clear.

The doctor comes in and they weren't shocked by his PFT's, they said it was to be expected based on the narrowing and obstruction of his airways due to the tissue sloughing off. I guess it shrinks up when they go in and debride with electricity and that is why they also dilate to help offset some of that.

He has been needing the procedure roughly every two weeks and tomorrow will be two weeks. He is scheduled to go in on Monday, the doctor offered to do it sooner but Shawn said no. She said this is not the first time they have dealt with this and that it can take many months before it is completely healed up but it's not anything to be worried about. They feel it's maneagable I guess. Probably small fries compared to some of the complications tranplant patients often experience. He is going to have PFT's done next Wed per our request. Shawn says that he feels wide open after the D&D so he wants to see his numbers. Me too.

She told him not to gain anymore weight (187lbs), no more than one beer on an occasion, wear sunblock and was otherwise very pleased with him overall. He is going to the gym on a daily basis, she was happy with that as well. He's down to 7.5mg of Prednisone and has been @ a therapeutic level with 2mg a.m. and 1mg p.m. Prograf. His WBC was a lovely 7.2 and all other labs within normal limits. So YAY for all of that good news.

So o.k. now that it's all out there, I feel better.

But man it did freak me out.


Christy said...

So now the explanation...

I bet you were so shocked! Glad the doc doesn't seem too concerned though. Yeah, I'm praying that Shawn (very soon) gets to the point where he doesn't need this procedure. It's always something Tina.. it really is. Hang in there.

Amy said...


HUGS my love!!!

Kim said...

Numbers have a nasty way of being scary! I'm glad there is a "logical" explanation for it, but that doesn't make them any easier to take. Thinking of you guys and fingers crossed for better results after Monday. Hang in there!

<3 Kim