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.

Moving right along

Ok... things have started to move very quickly.

I got a call earlier this afternoon from the donor coordinator that my blood pressures have been cleared. There is now nothing else standing in the way of me donating a kidney to Katie. Debbie was sending an email to Dr. Mendley and her nurse Nancy. She is also setting up the pre-admission testing date for me and coordinating that with the same thing for Katie so we can be there at the same time.

Then Nancy called to set up a pre-transplant consultation with Dr. Mendley. She gave me two dates and a few sets of times so that she can find a room for us to meet in. So that meeting is going to take place on either Monday 10/27 or Tuesday 10/28 (yep that's just a few short days from now.) I asked her where we were on getting a confirmed surgery date and she said she believes that everyone is still planning on 11/12 but when she calls me back to confirm the date and time for the pre-transplant meeting she will have that confirmation for us as well.

One step closer

At long last we finally have the results of the retest of the one that came back bad... and it came back good!! Yay!! We're very excited.

Just one more hurdle to cross. When I was at the hospital for my donor workup my blood pressure was high. That was kind of understandable considering they took it at the end of the day, and considering how that portion of the day went. However, it's not acceptable for going forward with surgery. So, I need to be able to show that that has come down. This evening I'm taking my blood pressure at home and I've gotten two readings with the bottom number under 80 which is what the committee (that approves donors) wanted so, it looks like we should be good to go on that.

As soon as we're officially past this I'm hoping we can nail down the surgery date.

BAD LAB PERSON!

The lab messed up really badly and made it so that the test couldn't be run. I'm redoing it tomorrow and we hope to have results early next week.

Katie is off to Camp All Star tomorrow. It's an overnight camp for kidney disease kids. She had fun there last year, hopefully she will this year too.

If you happen to be in contact with verizon wireless any time soon, please tell them you do not appreciate their treatment of your handicapped friend/family member. Katie was out with Steve today shopping for a new cell phone when she had a belly button leak and was denied access to their restroom. We're addressing it with them but it couldn't hurt for more people to mention it. And yes they were advised of her conditions and what the need was.

Cystoscopy and a Birthday Party

I'm sorry it has taken me so long to blog about the cystoscopy. I've started my new job in medical transcription, and Katie's birthday party was this past Saturday, and one of her counselors from camp kydnie came down and spent the weekend with us (which was GREAT!)

Here's what I wrote at the hospital (on Wednesday 10/8/08):

We got on the road at 10:20... only 5 minutes after we wanted to leave. Unfortunately, about 10 minutes in to the trip we realized we had forgotten blankie and floppy, Katie's beloved baby blanket and stuffed bunny. So, I dropped Steve and Katie off at the hospital and headed back home. I got back to the hospital at about noon and reunited with them in the PACU (pre/post anesthesia care unit.) Dr. Voigt literally followed me in to tell us that his OR schedule is way backed up because a baby was born with his intestines on the outside of his body and he needs to take care of that first. Obviously, we were very understanding.

However, Katie couldn't eat or drink and she got pretty annoyed about that throughout the day. She didn't go into the OR until close to 5pm! The procedure went really well. Dr. Voigt said that her bladder looked better than he expected. He did take 5 small biopsy samples to be sent to pathology. We supposed to call his office if we haven't gotten those results by this Friday (10/17/08.) Katie spent very little time in recovery and we were on our way back home around 7pm. She went right to bed.

Luckily we had asked Grandpa to come and hang out with James until we got home. Since she was originally scheduled to go into the OR at 11am we kind of thought we might have been home by the time James got home from school at 3pm but.. that didn't happen. We even had to ask Grandpa to cook dinner for James.

For the next day she was a little sore when she cathed but by Friday she was completely back to normal.


Here are some pictures from Katie's Birthday Party:

This one is of Katie and one of her counselors from Camp Kydnie, her visit really made our weekend!!Everyone had a great time. At the party everyone tie dyed a t-shirt and a pillow case and decorated a canvas tote bag. The next day Katie, James, her counselor and her cousin/bff dyed all the left over stuff... I'm still washing everything up.

And finally... I dropped off the sample for the more extensive test for me and we should have the results by the end of this week.

Trip to the OR before the big surgery

Katie has to have a short procedure this week on Wednesday afternoon. It's an easy procedure called a cystoscopy. Her surgeon wants to send a camera in to take a look at her bladder and also take a biopsy of it. He just wants to make sure he won't find anything unexpected when we get in there to do the transplant. She will miss the whole day of school on Wednesday and then school is closed on Thursday which works out very well in case she's not completely back to normal by then. Even though it's a quick, easy procedure that she has actually had done many times, it still invovles anesthesia so there's always risk.

Just to follow up on my previous post, I haven't received the lab slip to go pick up the materials needed to do the new test. I'm hoping to receive it this week so that I can plan to do the test next Tuesday since I really need to do it on a day when I'm home all day.

Snag

We have hit a snag in the path to having me officially approved to be the donor. One of my tests came back with a result that's not acceptable. We're going to run a more extensive test in a different way to see if we can get the result we need. For those of you inclined, please pray that this new test gives us the result we need so that we can move forward. Thanks.