Transplant eval

[Phyllis Ann Talbot]

Hi there - here's the post to our carepage - once we start moving forward on this - my carepage updates are probably a little less technical than what makes sense on this page - so I may start just putting the nitty gritty more detailed stuff here - but if I don't - feel free to ask me anything - we are happy to share in the hopes that the info or issues that come up with us on this journey might help someone else. Thanks!

Well – we survived the VERY long day of appts, tests, and more appts down at Egleston today. Hyde did GREAT and was a total trooper through everything (including meeting with at least 7 different folks and a couple of x-rays and an ultrasound). We don’t know a ton of details specific for him yet (and didn’t really expect to yet). We did get A LOT of technical info on transplant, medications, surgery, etc, etc, etc. and both Hyde and Phyllis were tested to see what kind of match they are.
At this point – the entire team will be meeting next Tuesday – after that we’ll find out if they will even let a blood related family member donate. Once we know that we’ll be able to figure out who should be tested as a donor and in what order. Some of the tests that were done today on Phyllis and Hyde to see if we are matches (and to help us know how hard/easy Hyde will be to match given all the blood product he’s had) won’t be back for a couple of weeks. In the meantime – the transplant coordiantor will be able to take the recommendations from the conference next week and start pursuing insurance approval for the transplant (shouldn’t be a problem) and the new drug that is the reason we are even pursuing this right now. This will be a little harder since the drug is FDA approved but not for AHUS – we will see what happens on this.
We found out that – best case scenario with a living donor – it takes about 3 mths from eval to transplant (and honestly – even this sounds pretty fast given ALL the steps and people involved on both Hyde’s side and the donor’s side). Ours will be longer than this just because it will be a little more complicated due to the complications we know we are facing.
Other than that – Hyde’s labs were fairly stable – his BUN and creatinine were 49 and 9.5, phosphorus is still high at 7.3, HGB and HCT are still low at 9.3 and 25.8, and platelets are good at 251. We have his next clinic on Aug. 16th, they tried to schedule it on the 9th – but that’s Ruthie’s first day of k’garten (YIKES) so we pushed it back a week. We’ll let you know once we get any feedback on Hyde’s testing from today or recommendations from the team. On the fun front – the kids are both in swimming lessons this week (only one so far) and they are going ;-) remember Grammy as she has to take the kids the rest of the week as I’m working. Ruth got to go pick out some school supplies and the Talbot grandparents will be flying down so Ruth will have the FULL contingent of folks who love her to see her off on the bus bright and early at 6:45 on Aug 9 for her first day of school. This is also adding to my panic at the moment!
Thanks again for all the support and we’ll let you know as we get more info. This is a very exciting/scary time for us!
Bill, Phyllis, Ruth, and Hyde

[Jessica Olivia Frysz]

That is GREAT that Hyde did well at his transplant evaluation! I wasn't surprised in the least, because he's a strong little boy :) I hope that Phyllis is a match for him, because unfortunately in my situation, my mom was 3 out of 6, but they won't let her donate as we all have the Factor H mutation and that it would be dangerous for both my mom and I if she donated. But, I have hopes that there is something out there for me. My team is still meeting trying to come to a conclusion, to a treatment plan for my transplant. As soon as I find a donor, I'm sure we will be all set ( I hope). But, that's awesome!

[Cheryl Biermann]

Wow, great news! I'm happy Ruth will get to be in the lime light as princess for the day! She deserves it! Hyde's numbers look GREAT! even on hemo, our BUN is in the high 50's at best and low 90s! Our phos levels are almost the same as well as the H & H! Looks like Hyde is really doing well under PD!

I'm not sure if they did Hyde's bladder test yet, but a word to the wise, bring his comfort items and a bucket for , you know. Nathan still balks at the thought of this from two years ago.