It has been awhile since I have updated this thread started about a year ago concerning my daughter Erin who back in late January had to go on dialysis.
Since January she has been having dialysis 3 times a week (3 hours each).
It hasn't been easy on her with multiple surgeries to allow access for dialysis.
Without going into all the detail, she had temp access put in, then a fistula that failed, then a graft that has had multple clotting problems, now a temporary access again, tomorrow a new graft in her inner thigh where her veins are much larger.
She has continued working 3 days a week and is staying positive with a good outlook toward the future.
She has had 8 people that we know of test for transplant compatibility to no avail. The BIG problem is that the antibodies in her blood are way too high. They don't seem to be going down. This disqualifies about 95% of people.
I have signed up for the Paired Donor program. (thanks Erlene).
Just when it seems like we are in for the LONG haul, I discovered a VERY interesting YouTube video.
I LOVE the internet! I found THIS VIDEO. Thank You YouTube!
There is a new treatment for kidney transplant patients with exactly my daughters problem. IVIG, which is a treatment using blood proteins which offset the antibodies and not only bring them down, BUT have been able to allow a non-compatible blood type transplant.
The BAD thing is they are not doing this at UAB yet.
So we have been in contact with Ceadars-Sinai in LA. Erin heard from them today. They think she is a candidate for IVIG and she and her Mom will be going to LA in early October to hopefully get the process started. This is Great News.
Your thoughts and prayers are welcome.
Got to get to bed. . . .be at UAB at 6am. . . . .zzzzzzzzzzzzzzzzzzzz
Since January she has been having dialysis 3 times a week (3 hours each).
It hasn't been easy on her with multiple surgeries to allow access for dialysis.
Without going into all the detail, she had temp access put in, then a fistula that failed, then a graft that has had multple clotting problems, now a temporary access again, tomorrow a new graft in her inner thigh where her veins are much larger.
She has continued working 3 days a week and is staying positive with a good outlook toward the future.
She has had 8 people that we know of test for transplant compatibility to no avail. The BIG problem is that the antibodies in her blood are way too high. They don't seem to be going down. This disqualifies about 95% of people.
I have signed up for the Paired Donor program. (thanks Erlene).
Just when it seems like we are in for the LONG haul, I discovered a VERY interesting YouTube video.
I LOVE the internet! I found THIS VIDEO. Thank You YouTube!
There is a new treatment for kidney transplant patients with exactly my daughters problem. IVIG, which is a treatment using blood proteins which offset the antibodies and not only bring them down, BUT have been able to allow a non-compatible blood type transplant.
The BAD thing is they are not doing this at UAB yet.
So we have been in contact with Ceadars-Sinai in LA. Erin heard from them today. They think she is a candidate for IVIG and she and her Mom will be going to LA in early October to hopefully get the process started. This is Great News.
Your thoughts and prayers are welcome.
Got to get to bed. . . .be at UAB at 6am. . . . .zzzzzzzzzzzzzzzzzzzz
