Transplant Conference

Today we had our transplant conference with Dr. M, her nurse Nancy, and the pediatric social worker assigned to us Megan.

We got a lot of information, and had some really great discussions. Here are some points from today:

Katie will actually start taking her immunosuppressant meds a couple of days before the transplant.

They expect her to be in the PICU for 1-3 days. The reasons for her being there is because of the level of monitoring that is needed immediately following a transplant. Typically transplant patients get one of the 4 isolation rooms in the corners of the larger "bull pen" area. The social worker is going to start working on the PICU nurse manager to allow James in to see Katie while she's in the PICU (they have a rule prohibiting kids under 12 to visit.) They expect Katie to come out of the OR with an epidural. She will have several IVs and they will be running lots of fluids so that she produces lots of urine. She will have at least one blood draw per day throughout her hospitalization, early on this could be as many as 2 to 3 blood draws per day. They will try to use IVs for these as long as they continued to be available for this.

We had previously been told (by Dr. M) to expect a 5-7 day hospitalization but today she said 1-2 weeks :o(.

After she's discharged we will be seeing Dr. M 2-3 times per week at first, this will taper to once per week, then every other week, then every 3 weeks, and so on.

We had a long discussion about the use of prednisone (which is a steroid) in transplant patients. Steve and I had read (and printed out) various studies about discontinuing steroid treatment, or not using any steroids at all. Dr. M was obviously very well read on the subject. She discussed with us that removing steroids means adding or increasing dosages on other meds so everything is a trade off. All of the meds involved can have undesirable side effects. There's no denying that long term steroid use is or at least can be damaging to the body on several levels. Dr. M participated in one of the studies we read. She has, since then, begun reducing dosages of prednisone, and she tries within 6 months to have her transplant patients down to very low doses every other day. Her patients have responded well to this protocol and haven't seen the damaging side effects continue once they are down to the low doses. She's not opposed to trying to discontinue the prednisone after a minimum of a year. We were very happy with the discussion, this is a conversation we will revisit.

The main immunosuppressant med they would like Katie to be on is Prograff. Initially she will be on Prograff and Cellcept. In addition to those she will also be on prednisone, and something to prevent mouth thrush, and some additional IV meds I'll explain later.

There are a couple of things of concern that can be received by Katie through the kidney I give her. One of them is CMV, and the other is EBV (Epstein-Barr, the virus that can cause mono.) I am negative for CMV but, unfortunately, positive for EBV. This means I have antibodies from that virus. I may or may not have had mono at some point in my life. The EBV antibodies will travel from me to Katie along with my kidney. She will need to be treated by IV antibiotics for either 6 or 12 weeks after transplant, and she will remain on an antiviral medication for longer than if we didn't have this EBV issue to deal with. If she develops the EBV virus it can cause rejection of the kidney. Even if she doesn't develop it, having the antibodies and treating for them leaves her suseptible to a particular kind of lymphoma. Obviously I feel horribly guilty. But the fact is that finding a kidney that is both CMV and EBV negative is pretty unlikely. Dr. M feels this is an acceptable risk to get a kidney so closely compatible.

There were a few other incidental things from the meeting but they can wait for later.

When we got home we got a call from Dr. M that Katie's creatinine is up along with her potassium and albumin. We're hoping she's dehydrated and that getting her to drink lots will bring us back down to reasonable levels. She didn't mention what would happen if those levels don't come back down.