A LONG overdue update and a Happy Thanksgiving message to the aHUS families out there!

[Jessica Olivia Frysz]

I know it's been quite a long time since I have posted an update on this site. I have been quite busy working a 3 day a week period at the doggie daycare I work at, all while trying to find an LVT job (no luck yet). I do all of this all while being dialyzed 3 days a week and all while awaiting some good news on the transplant and well...FINALLY I received some good news I have been awaiting for and only within a couple weeks before this very holiday. I receive a call from one of the individuals who originally had gotten tested for me, but was not a complete match (reached the 2nd level in the process), but loan and behold, within that phone call she tells me that Johns Hopkins has decided to go ahead and test her further, but this time, it will be for someone else...this is for a paired exchange to occur.  I was told that now, she would be considered my donor in all of this as we move on in the process.  Despite all of the struggles I have been experiencing through this entire process, I am finally moving forward and getting VERY close to transplant. I was also told that in order to receive the Soliris, I have to have someone paired up with me, in order to even request it. It sounds daunting I know, but if it means one step closer to transplant, it means one step closer to Soliris, and it means one step closer to a better, brighter life in the future.  I am getting excited (but not too excited yet), because I don't know what the results are going to be of the blood tests that my donor had to have, she also has to meet with the team at Johns Hopkins, which is also another task to tackle. I haven't been this close to transplant, since my first transplant which took place in 1999 and I was just getting off of my dialysis treatment when I received the call at my unit that a kidney was available. This time, it's even more exciting to think that I am that much closer to receiving one and thanks to so much research being done, I will now hopefully be able to keep this kidney.  And when I tell people the bit of good news I received, their faces light up, knowing that I could potentially be coming off of that dialysis machine afterall. But for my parents and I, it's more of a neutral excitement, because we have been down this road before, once our excitement rises, it tends to fall back down again because bad news comes quite quickly.

 

To all of the aHUS families: I wish you a happy, and healthy Thanksgiving. Enjoy family, friends and most of all, all the food you can eat :) Happy Holidays everyone!

 

 

 

[Jessica Olivia Frysz]

Thank you Selma! I know for sure that I will have more to be thankful for when I receive my new kidney at last. It's been over 20 years that I have been on dialysis, that I am very ready to be done with it.

[Selma Bennett]

Thank-you for the Thanksgiving greetings and all your wonderful news! Good luck to you and hope that soon we all have more to be thankful for once you recieve your new kidney!

 

[Jessica Olivia Frysz]

Cheryl: I will do the best that I can to keep everyone as updated as possible. Johns Hopkins I hear has a good success rate with the transplant aspect, especially with HUS patients. I was told that they were trying to find a close enough match for me, and are planning on entering me into their incompatible transplant program, so we'll see what goes on from there. But, so far so good as far as I can see and have heard.

[Cheryl Biermann]

This is indeed good news, Jessica, keep the updates coming!  Our transplant nurses explained the compatibility issues to us as well, and it seems, they try at first to get as good a match as they can, but have the ability to control a less perfect match as well.