well after I cried all day yesterday ti my best friend (Jesus) I feel so much better.
1st--I'm typing with one hand. after 15 years of symptomatic carpel tunnel, it's full blown in the left hand. I prayed that I could understand jim's pain. THAY WAS DUMB. sdorry fir typos. No wonder Jim said he would have his legs apmutated if it wasd an option. The pain increases 10 fold when laying down. I have not slpt more than 4 hours the past 3 nihgts. Jim drove home,
Oh, maybe that should have been first. We're home.
well, Jim's cond. should have been 1st, but I wantedt to explain the typos thing. Still pretty fast for one handed. Can take the girl out of court reporting, but can't take the court reporting out of the girl i guess,.
Well, docs are 95 percent sure it's not an infection or viral, which means 95 percent leaning towards GVHD of the lungs. The host (jim) and me are not very happy about it. But we are peaceful, at least at the moment, with plans on remaining so. The graft (Jim's new immuney system) is attacking his lungs, like they are his enemy or something. I told God how much we need them. I know he's listening. I"m praying he's agreeing.
Okay, this is hard. I'm forcing the left hand a bit. (btw pray for me. The pain is severe, and with Jim goin on Medicare, I had to change insurance, and I did that last week, and I have no idea what insurance I have at this time, so I don't know what doctors I can go to, and it's just so convoluted.
Anyway backe to JIm. We have to go back to the NIH in 2 weeks. SIGH... I need surgery before then. I need it now. Anyway, they will do another pulmonary function test on Jim just to measure whether his lungs are staying the same or decreasing.
If it is GVHD that has caused the inflammation in the lungs and is attacking the lungs. It can be slow. Or it can be fast. It could just stop all of a sudden and go away. It cannot be controlled, and any damage done can never be reversed. So, that's it in a nut shell. And there is no way of knowing. There is a trial thing going on a drug they hope that can slow the progression if it is GVHD, but we don't know anything about that yet. It didn't sound all that great tho. GVHD of the lungs is rare. But because Jim has had GVHD of the skin and has had lung problems (such as his cronic bronchitis) it does make Him susceptable. This is NOT good news.
Some other weird stuff is going on. He is neutropenic again. So I may have to give him a few shots again. He may need some oxygen. I don't know. I just hurt for my husband. He is so brave. To see him laying in that hopt. room again.. you have no idea..
I know the summer isn't happening the way I had hoped or planned or prayed for, but it's okay.
I listened to this teaching on the way to NIH. John McArthur about trials. It was great, and we felt happy inside to know that what Jim and I go through has matured us is ways that we could never do on our own. The one thing trials do is help us to let go of the desires of this world. That's a hard one to wrap my head around as my list is so small, there is not much left. "no kidding, John. Really?"
I still have quite a way though to go through fear for my future. I guess that's God next assignment. But really, none of us know what the next day, or even the next moment holds for us. So, I guess Jim's condition isn't any different than anybody's. It's true, but why doesn't it feel true?
Okay. I have to stop now. hurts. in a few ways.
Us
3 comments:
Oh Gloria...
I don't know what else to say. I will pray for your hand, Jim's lung, and God's peace.
If you want to talk later, call me. If not, I understand that too...
Love you,
K
Gloria,
I love you girl! I am praying for you each time I think of you and will try to think of you very often!!! ;)
If you need anything...
ps. your blog is gorgeous!
Love, Amber
love you both.
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