Monday, July 15, 2013

Cleared for Transplant

I was a bit nervous about today's final pre-transplant check-up--who am I kidding, I was a lot nervous judging by the nightmares I was having last night in which I take her in to be seen and she has a high fever and won't stop throwing up.....

I am super thrilled to say that our appointment went nothing like the dream.  Alexa's ammonia was 23! And physical examination showed a clear and clean system!

 We were given the clearance and told to report Wednesday morning for admittance.  It is a bit earlier than normal, but due to her complicated metabolic condition, they do not want any hiccups on Thursday. 

I met some new to us doctors and was reminded again about how great and caring our transplant team is. 

We were approached about many different clinical trials and research going on. Because I know that transplant is only possible for us right now because of all the others previous to us who said yes to trials, I said yes too. It is the only way to advance the knowledge so that those after us stand a chance too. 
Please know that i firmly believe in participating in studies for the advancement of medicine BUT I would never blindly subject Alexa to any research if there was any chance of it causing her care to be lowered or if I though for a second she might experience any amount of discomfort as a result of it. 

That being said, these are the trials that Alexa will be a part of:

1) A transplant centre biobank registry which will collect and store biological samples in an attempt to identify the genes that influence the outcomes after transplantation. It is the hope that it will help in finding ways to improve treatment, develop new medicines, diminish side effects, and combat rejection. 

2)A trial of tacrolimus dosing after transplantation. Tacrolimus is a commonly used medication after transplant to lower the activity of the immune system. This study aims to find out if they can reach the desired levels of the drug sooner by adjusting the dose based on the kind of gene one has, versus dosing based on weight of the patient. 

3) They have asked and I have given permission for them to video record Alexa's surgery to teach medical students at University of Toronto.  
I can even watch it they said---uhhhhh not sure if I am ready for that. Maybe in a couple of years. 

These are quite brief descriptions but if anyone has any questions about them or interested in more details, please feel free to email me. I am more than happy to discuss them. 

Once again my sweet little girl will help others. With each day that passes she amazes me more and more. 

As an aside, both my computers went kaput at the same time. I had many pictures of our 3 weeks of summer that I would like to share. If can get access to a computer or my iPad memory card adaptor comes in soon, I will post them.  And I discovered that I really hate blogging from my phone! 

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