Monday, January 29, 2007

Preliminary Transplant Evaluation

This morning we met with Diane, the transplant coordinator, and Dr. Karrer, the transplant surgeon. We basically went through a preliminary transplant evaluation meeting. A formal transplant evaluation usually takes a whole day, and we would meet the whole team involved in Julian’s operation. Most of those formalities can take place at a later time: today was just about going over the process whereby Julian will receive his new kidney.

There’s a lot of information to process, and I won’t (can’t?) repeat it all here. They gave us a 6 lb. binder full of information, from team member contact info, to the step-by-step process leading up to the actual surgery, to the medications involved in Julian’s after-care, to the risks involved at every step. We’ll be experts by the time the surgery actually takes place.

Some of the things we’ll be doing that we would appreciate your prayer for are:

  1. Dealing with the insurance company – a transplant is a major deal in the insurance world, and we want to make sure it’s handled appropriately by all parties;
  2. Major and minor preparations leading up to the surgery – Julian’s labs, ekg’s, x-ray’s, and overall health, our family psych eval (!), and our own health and well being, along with a hundred things I can’t even think of right now – all very important;
  3. An appropriate organ match – neither Stacy nor I are good matches for Julian – Stacy’s type ‘B’, I’m type ‘A’, and Julian is type ‘O’.

The match is probably the biggest thing for us in the immediate future: as a type ‘O’, Julian is the universal donor, but he is the hardest to find a match for when it comes to receiving a donated organ. None of Julian’s living relatives have type ‘O’ blood that we’re aware of, so we’ll be put on the list for a cadaveric donor. The donor’s blood type pretty much has to be type ‘O’ in order for it to be viable. After that, there are several other comparative markers the surgeons will be looking for, to ensure compatibility and reduce risk of rejection. Lining up all the factors seems pretty daunting, and we’ve heard the wait can be anywhere from days to years. We’re hoping for days.

Should the wait be too long, and if Julian’s kidney function declines further, we’ll probably have to put him on dialysis in the interim. We’d like very much to avoid that. As such, we’re praying for a quick evaluation/preparation period, followed by a short wait for an organ. Please pray with us that this comes to pass.

After the actual transplant takes place, there will be a whole new set of prayer requests, as receiving a donated organ of any kind makes a person susceptible to any number of other possible ailments. That thought can be paralyzing to us as parents – do we really want to subject him to all that risk? But weighing all the options, we still feel that the transplant is still the best course of action. God has brought him this far. We’re confident that God will bring him through this as well.

Friday, January 26, 2007

Transplant News

On Thursday of last week (1.18.07), Stacy and I took Julian to visit Dr. Ford at The Children’s Hospital (TCH) in Denver. Dr. Ford, Julian’s Nephrologist (kidney Dr.) had requested we come in a month early, so we were a little apprehensive. As the discussion began, our expectations were confirmed: Dr. Ford wanted Julian to go on dialysis.

Since last October, Julian’s kidney performance has been dancing around a threshold that traditionally triggers the need a for kidney transplant or, in the event that he’s not yet big enough for a transplant, dialysis. Stacy and I were hoping that Julian would be big enough for the transplant. According to Dr. Ford, this was probably not so.

Here’s why. A young kidney transplant patient can receive a new organ in one of two places: the pelvis, or the peritoneum (the smooth transparent membrane that lines the abdomen and doubles back over the surfaces of the internal organs to form a continuous sac). Traditionally, patients 15kg or above can usually receive a kidney in the pelvis (the old kidneys are left intact). However, patients weighing between 10kg and 15kg are usually considered too small to receive the pelvic transplant, and must receive it in the peritoneum. This becomes a problem in the event that the patient needs to be dialyzed in the future, as not all patients qualify for hemo-dialysis (when the blood is removed, cleansed and replaced mechanically through a port into a vein). The only other option is peritoneal dialysis, which would not be possible if there were already a transplanted kidney in the peritoneum. In that this would restrict Julian’s possible modes of treatment, it looked like we were headed the dialysis route. Julian is just below 10kg at present.

However, Dr. Ford encouraged us to meet with Dr. Koyle (Julian’s Urologist) and Dr. Karrere (TCH’s head transplant surgeon), to get their input as well. Our meeting with Dr. Koyle took place on Wednesday morning (1.24.07).

By the time we met with Dr. Koyle, he had already read Dr. Ford’s report of our meeting the week before. It turns out Dr. Koyle and Dr. Karrer have written papers and performed pelvic kidney transplants on patients below 15kg. According to Dr. Koyle, their smallest patient to date was approx. 9kg. Further, Dr. Koyle thinks Julian is a good candidate for the procedure.

So, this Monday (1.29.07), we’re meeting with Dr. Karrer, Dr. Koyle, and the transplant coordinator to discuss the general game plan that they have already come up with. Dr. Koyle anticipates that the transplant could take place as early as this spring, depending primarily on the availability of a viable organ. Three months after that, he thinks Julian’s bladder will be ready for reconstruction.

Stacy and I are excited! We had hoped that we would be able to avoid dialysis, only because it’s one more invasive procedure (an ongoing one at that) that Julian’s little body would have to recover from. He’ll have to weather enough already, even without dialysis.

Please check back next week to see how things went at the Dr.’s. And pray with us for Julian’s health. Every night at dinner, we hold hands, give thanks for our meal, and pray that God would grow Julian up big and strong.