Monday, July 16, 2012

we're home

Hey Everyone,

Thanks for keeping up with what's been going on this week and praying for us and encouraging us along the way.  We are so sick of all of this stuff - ugh. 

We got home from the hospital around 4pm today.  Greg's feeling really wiped out physically and we're both emotionally exhausted.  A lot was thrown at us over the past few days and we're just trying to deal with everything without succumbing to despair.

They doctors have increased both of Greg's immunosuppressent transplant meds and they've also put him back on prednisone.  And since he's on prednisone, he's also on a couple other things to prevent him from an infection common with prednisoe and to protect his stomach from ulcers from all of these meds.

Next Monday we have an appointment with the transplant clinic to discuss Greg's situation and for blood work to make sure his medication levels are okay.  At that appointment they will schedule his next biopsy.

We finally got to see one of the coordinators (Carolyn - our favorite from before his transplant) and she gave us a lot more information about what's been going on - what possible causes are, etc. - than we got from the doctor who pretty much wouldn't commit to giving us any specific details about what to expect moving forward.  We still don't really understand the different types of rejections and how they are treating them.

What we do know is:

Some sort of infection must have caused the antibody mediated rejection.  They've tested him for and ruled out any major infections and it could have been something as simple as a cold (he's had a sore throat a couple times but really hasn't had any major cold at all this year but apparently it could be something very minor that could cause this)

The treatments in June did have a positive affect on the AMR, but it wasn't enough.  He may have had a minor amount of cellular rejection beginning around that same time that wasn't detected in the biopsy - and even though he was receiving some steroids in June the dose was too low to stop the rejection from getting worse.

This hospital stay and the mega-doses of steroids he received were primarily targeting the cellular rejection.  The hope is that between the steroids, the increase in his anti-rejection drugs, and going on prednisone again, the AMR will also be affected (and prayerfully stopped).

Greg had been at a pretty low level of immunosuppressents so there is a lot of room to increase his doses before running out of treatment options.

Greg is going to be seriously immunosuppressed for awhile - no crowds and he'll be wearing a mask a lot again.

The treatments he had in June were major treatments and if he needs more treatments for the AMR after his next biopsy, they will have to pull out "bigger guns".  There seem to be a few options for treating him - but none of this is set-in-stone.  Again, it's a new area of medical understanding so there's no clear path in this scenario.

Now, if you can make sense of all of that.. give me a call and explain it to me!  We are in so far over our heads and while we want so much to understand every detail it's just not a possibility, which is very frustrating (for me at least).

How are we doing personally?  Not well.  But neither of us feel like we can "go there" emotionally right now.  We're just trying to keep moving forward - and bit by bit working through how this is impacting us inside.

We are so grateful for your prayers.


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