I went in to last weeks appointment with Infectious Disease doctor a little too optimistic.  I was told I was going to have to stay on these big 3 IV antibiotics for another six months before being listed for transplant.  These potent antibiotics really are no fun, actually they are pretty miserable if I’m to be honest! The reason for needing to stay on is that this infection I recently had, mycobacterium avium complex, is really nasty and will hide in organs only to reappear.  The surgeon that will be doing my transplant just had a patient that contracted this post-transplant and they had to remove the transplanted organ so they could stop the immunosurpressants.Needless to say, I left that appointment feeling very discouraged.  After long conversations with my family I decided there is nothing else to do besides stay positive and keep pushing forward.  I have several other issues I could be working on in the meantime to keep making myself stronger going into transplant to guarantee the best results!

Today I had an appointment with the transplant team at medstar.  The surgeon made sure to go over the risks of this transplant once again to make sure I am aware of everything that could possibly go wrong including, but not limited to cancer, rejection, possible need of kidney transplant, and of course death.  He says my case is going to be way more complicated than most for several reasons. 

1. I have an ileal conduit.  This means that part of my bowel was used to make a stoma for urine to flow through into an ostomy bag.  There is a very good chance that the surgeon will lose the blood supply flowing to that stoma and need to completely remake another stoma.  That surgery itself took over 14 hours last time and is the reason I need a transplant to start with.

2.I have a baclofen pump.  A baclofen pump is device that looks like a hockey puck that is surgically implanted into my abdomen with a catheter that runs into the spinal canal to deliver medicine.  If this pump is to get dilsodged I could die from withdrawals.  When I had my scoliosis surgery, something like this happened and it was really rough, but I pulled through once again!

3. Curvature-  Although I had scoliosis surgery, they were not able to correct the scoliosis 100% and even with correction, my organs were already moved into different locations.  Nothing about the placement of organs in my body is “normal” anymore. The surgeon is going to have to find the organs and try to replace them the way they are.

Add these to the risks most people face going into this type of transplant and the survival rate is a bit lower, but I fell really good about this.  I never in my wildest dreams thought there would be a chance that I would actually qualify for this transplant.  I feel like God has opened this path and everything has aligned the way it should and it’s going to be okay!  I know it’s not going to be easy, and I’m prepared for the worst.   I’ve recently met several individuals whom have had this transplant and I’ve been following their journey.  I’ve seen the goods and their bads.  No two journey’s are alike with an intestinal transplant. 

With each passing day more and more is learned about this rare transplant and the survival rates continue to improve.  Maybe this extra time will help with the progression of the transplant.  Hopefully in the end I will have a whole new life where I’m not spending most of my day hooked up to tubes running nutrition, fluids, and medications into the bloodstream.  Instead I will be able to enjoy a meal with my family with no tubes attached!

Once listed, things will move quickly seeing that this is a rare procedure.  Most transplants happen within 3-4 months.  I’m ready!  Thank you for being part of this journey with me.  All of your donations to COTA in my honor are greatly appreciated!