Hey guys! i am scheduled for surgery! They’ll place a Tenckhoff cathether in my stom

Hey guys!

i am scheduled for surgery!

They’ll place a Tenckhoff cathether in my stomach so that I can start peritoneal dialysis.

This is necessary becasue of my MNGIE - a very rare mitochondrial disease - thymidine is building up in my body and its causing me extreme pain and nausea. Only after this can I receive stem cell transplant - for which I got bad news today.

What is MNGIE

First, we still dont have a hospital that is willing to the stem cell transplant so far - the only hospital in Hungary is not willing to do it - citing that they have never done such procedure on a MNGIE patient.

Second,the dna testing of my parents came back today and they’re both carries of this disease. I am like still coping with that information.

But my sister is healthy! This means my possible donors from 3 went down to 1. :(

other than that I am still deaf, unemplyed, need meds, special foods for my diet and I have no income.

Here is my older post with my medical documents.