Gracie Facie

A lot has happened since my last set of posts. I’ll do my best to fill in all the blanks since many of you have been asking about Grace.

I would first like to say thank you to EVERYONE who supported our family while I was in school. I graduated in April and passed the boards June 1st, which means that I’m officially an ‘RN’. I work full-time in the Neonatal ICU at Aurora West Allis Hospital and enjoy it very much. The people who work there are kind, and I like the challenge that specialty nursing presents.

Now about Grace. She has been doing well with her peritoneal dialysis (PD) since Thanksgiving. We’ve waitied to pursue transplant aggressively until now because it took quite a while to get Grace’s body as normalized as possible. (Also, we needed to close the nursing school chapter before opening another).

Transplant, as you can imagine, is very complicated and involved. Enormous amounts of lab tests, doctor appointments, and meetings need to happen to prepare for the surgery. Yesterday we talked with the transplant surgeon and transplant pharmacist, along with the entire dialysis team we meet with monthly. The meeting with the surgeon was by far the most disturbing and eye-opening appointment we’ve had yet. The picture that was painted for us was not terribly encouraging, but I understand that this was not his intent, he was just being honest and informative.

In a nutshell….

Acute (or almost immediate) rejection seldom happens anymore because the anti-rejection drugs are incredibly effective. The biggest risk for Grace is due to the fact that her kidney failure is auto-immune in nature. The chance of the FSGS attacking the transplanted kidney is about 40%, and while the doctors watch for this very closely and would treat it aggressively, she could very easily loose the organ and wind up back on dialysis.

It was mentioned yesterday that PD is only effective for a few years, and if she were to be on dialysis long-term, it would have to be hemodialysis. Hemodialysis patients need to spend many long hours/week in the hospital or dialysis center, and tend to feel well only about one out of every three days.  Also, we’ve been told that people who remain on dialysis indefinately have a considerably shortened lifespan.  For a child, a working kidney is by far the best option, and the outcome of the first transplant really sets the standard for how subsequent transplanted organs behave.   

In the event that the transplanted kidney was lost, Grace would most likely be a candidate for another one, but it would be another long wait.  It takes months to approve a live donor, and at least a year to wait on the donor list for a cadaver organ.  The same risks would still be there, but the compatibility of Grace’s immune system may be different with another donor’s tissue.  The main difference between live and brain-dead donor organs are the lifespan of the transplant.  Usually a live-donor kidney can last in upwards of 20 years, while cadaver kidneys last only about 12. 

Life post-transplant is not without its non-organ-specific problems.  Because of the anti-rejection medications, Grace has a high chance of developing diabetes, cardio-vascular disease, osteoporosis, etc.  The list seems endless.  The additional risks of infections and organ rejection will follow her throughout life.  Grace has an endless supply of ‘what if’s’, but I guess I don’t know any individual who doesn’t. 

Please don’t misunderstand my intent, here.  The purpose of this blog is to inform you, not to seek pity or sadness for Grace or our family.  I am asked by many people every day how Grace is doing.  After this information was presented to us yesterday, I just don’t feel that I can verbalize it over and over.  I love every one of you who asks about Grace and prays for her, and I ask for you to please continue to do so.  She needs all the positive energy she can get.

One thing our life with Grace has taught us is to try not to think about the future any more than we need to.  We try and live a life with fun and meaning.  We try to focus only on the things we can change, but this is always a challenge.  (I know it all sounds so cliche, but there are no better words). 

To end on a positive note……..Grace has been granted a wish from the Make-A-Wish Foundation.  She has always wanted to go to Disney World, so they’re sending us there for a week in October.  Our family (mostly Todd and Grace) is crazy about Halloween, so we’re excited to experience all the Mickey’s Not So Spooky Halloween has to see and do.

I wish everyone a healthy, fun, and safe summer.

Angie