Happy New Year 2011 from France and this…Continue
Bill and I just wanted to thank everyone for the wonderful participation in this web-site and also to thank all who have so faithfully served the foundation for many years as well as those of you who are getting involved now, fund-raising or taking calls from new parents or getting on-line with your experiences and sharing your knowledge. All of these activities have made our community both stronger and healthier.
With the old year closing out…Continue
Hi all, i just wanted to say a huge merry christmas to all the aHUS community and hope that you are all doing well at this time of year so you can enjoy a wondeful day!!!
I want to thank everyone here for becoming a part of my life and for being there for me when i need advise or a listening, understanding ear... it has been invaluable to me on my journey and has provided me with so much strength at times when i have been feeling low!!!
Again a hope you all…Continue
Tomorrow, the Alps for a ski week…
Hi all. I just thought I would let you all know that after much deliberation and medical advice I decided to opt for the Liver/Kidney transplant for my son Riley. This was for many different reasons and now it seems I made the best choice.
On 17th August Riley was enlisted for transplant. On 1st October we had our first dreaded call. It was horrible, getting to the hospital, having dialysis and plasma exchange and being prepared for theatre. Everything was rushed and I was beginning…Continue
I know I haven't been on this site in a long time, but I've been busy like a crazy bumblebee trying to get all of my work done, before the Christmas holiday begins. I've now officially finished my fall semester and look foward to seeing my spring semester in full swing :) I have gotten word on my transplant situation and I have YET to be listed STILL. I found out at the last minute that I am going to have to have a liver biopsy, due to the fact that I have been diagnosed with level 3…Continue
This post is a much better one that the last.......
Jonathan had his Bilateral Nephrectomy done last Monday. What was to be a 3-4 hr. surgery, turned into a 7 hr. surgery. Jonathan had alot of scarring and adhesions on his right side due to all the years he was on PD. It took the team almost 5 hrs. just to remove the right kidney. The biopsy came back and NO CANCER!!!!! I was afraid Jonathan would think it was all for nothing, but then he said to me that he…Continue
Good afternoon members. Jose has no catheter, nor has the dual jack, and he will go to the hospital every 15 days for treatment with Soliris.
This Christmas will be very very very special in our home, it will erase the shadow of pain that my heart when he had both kidneys removed 20 on December , 2006 and…Continue
Coen, almost 8, is very excited for Christmas. He is counting down! We are busy planning for our annual Christmas Eve party--which entails lots of food, tons of people, free-flowing wine, rockband on wii--and always a very special visit from Santa. As I think about it, it is funny how traditions come about.
It was December 15, 7 years ago, when Coen was rushed to the hospital and diagnosed with aHUS. I always remember the date because I remember being totally ignorant and…Continue
I didn't write for a long long time as there is never enough time for anything anymore but felt I need to update you on what is happening with us. I feel a little bit like Donna. Maya was stable and well on peritoneal dialysis for a long time. We've been waiting for Soliris study to start in the UK impatiently and only recently we've learnt that it is due to start very very soon. We could then go on the waiting list stright away and wait as none of us can be a live donor. But of course it…Continue
Hello, I hope everyone is having a blessed holiday season. I was wondering if there is anyone that is doing weekly plasma exchange and if you have been doing it for a while. If so can you tell me how that is working out for you? Thank you and blessings to you all.
As this year quickly approaches its final days I think of the support our Foundation families and our immediate families have provided and I thank you. Support comes in all forms from a simple email, hug, or call, to keeping us company when our children are in the hospital. We appreciate the insight we've gained from the Foundation and would now like to return the support. We are hosting a raffle fundraiser (posted on the Events page) with a quick turn around as the prize will make an…Continue
Added by Sharon Madrid on December 7, 2010 at 4:17pm — No Comments
I don't even know where to start....
Last saturday, after dialysis, Jonathan started to experience lower back pain. As the evening progressed, so did the pain. We ended up taking in to Children's Medical Center in Plano. Jonathan was in so much pain. After ultrasounds, and lab work, they decided to transport him to Children's in Dallas. His Dr.'s could NOT find the source of his pain. They decided to do CT scan. They found a small tumor on his right kidney that back in April was fluid…Continue
I thought an update on Nathan's transplant would be in order; we are continuing to get blood work, have already completed his immunizations, and done an ultra-sound...next up is an echo, which we expect to be good as his blood pressures have been extremely stable since being on hemo.
We are expecting things to culminate in a transplant by the end of March or early in April. I will be his donor.
One of the surprises is that after everything he has been through…Continue