Ashley's Story

She will leave fingerprints all over your heart


Back to Plan A or is it B or maybe C?

Things are really messed up, but for now this is the plan. I forget what plan we are actually on. There have been several of them.

The surgeon reviewed the slides with the pathologist and they have "determined" she is not in rejection currently. The reason they believe her not to be is because the slides show no evidence of crypt death. I'm going to try and explain. On the slide they have a piece of tissue from the inside of the transplanted bowel. They examine it on the cellular level and look at an area of 10cyrpts. I don't really know how to explain those, but kind of think of them as going up and down. Between these crypts they are looking for cellular death. If they find 5 or more dead or dying cells in that area of 10 crypts they are looking at then they determine she is in ongoing rejection. If they find less than 5 then they determine she has had an episode of treated rejection. Last week's biopsy yielded 4 cellular deaths in the 10 crypts. Therefore they say she is not in "active ongoing rejection". I have not read this weeks pathology report yet, but I am to assume that it will support this same finding because the slides convinced the surgeon that she did not have to be treated for another round of rejection. Although very confusing, and not totally clear I have to be happy about this finding. Not being in rejection is the goal. Not having to put her through surgery(which they all acknowledge would be very hard on her in her current condition), and not having to be treated with the nasty thymoglobulin are all good things. I just hope they are sure that they are correct this time. Like I said earlier it has been more than 10 days since it was treated. I really, really hope they are sure.

The surgeon is now convinced(although he was pretty sure the other way this morning) than she does indeed have a CMV viral infection in the bowel that is causing all of the damage at this time. He has ordered that we re-start the gancyclovir, but at 1/2 the strength she was on and only one infusion a day(thank you, Lord). We will also begin giving her cytogam infusions once a day. This the drug that she was given once a month for the first year out of transplant to prevent CMV. She will receive 3 infusions over the next 3 days and then will be reassessd to see what progress has been made.

When I asked which one I would want to choose if I had to choose one I was told, "CMV, as long as we can keep it from spreading." Again, I am going to be happy about these determinations and take it as being a positive thing.

To be completely honest, Dave and I are not sure that they really know. There has been an awful lot of going back and forth and it seems things change from one moment to the next. We do believe that they are some if not the very best transplant team in the United States and that is why we are here. They have as good a chance at being correct as anyone else and so we have to trust them. We are praying for good results. We are praying for her bowel to heal. Her CMV to be gone, and for her life to resume the way it was before she became sick again.

Ash is sleeping. She has been all day. She has not had the energy to sit up since her return from her scope on Monday evening. She is losing strength and that is so, very sad to me. She had worked really hard to learn all that she had and I can see it slipping away. I truly hope that over the next week she will turn the corner and begin to improve.


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