Bilateral Nephrectomy

[Donna Kolp]

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 filled. It has since turned solid. They are not sure if it is Renal Cell Carcenoma. They have decided that it is in Jonathan's best interest to remove both his kidney's, since there is a fluid filled cyst on his left. We are hoping and praying it will NOT be cancer. It is extremely rare for children to develop RCC, as it mostly occurs in adults. But, then again, most children are not on dialysis for 14+ years.

Jonathan is home for the time being. We will be going back to the hospital on Sunday so he can get his FFP, and his surgery is scheduled for Monday.

Please pray for my Jonathan, that he will have strength and courage... that he will endure yet another surgery, and that the biopsy will show no cancer.

One thing I do want to point out.....The back pain...is gone, and was totally UNRELATED to this. I believe in my heart that God was looking out for Jonathan.

God Bless,

Donna

[Joy Lewis O'Brien]

I hope all is going well for all of you and he's feeling much better today!

[Linda Burke]

Sorry that last night was such a tough one for Jonathan's surgery, glad to heard that today was a better day! Sending prayers your way for a speedy recovery and more peaceful days!

[Sharon Madrid]

So sorry to hear this news. I will be praying for Jonathon, for benign results, for strength and for comfort in knowing that God is with him.

[Heather Still]

Thinking and praying for Jonathon.

[Cheryl Biermann]

Donna,

Hugs to all of you from all of us. Our prayers are with you.

[Paula Blanchard Lamigo]

Donna,
God is watching over Jonathan & we will keep him in our prayers. I hope the results come back as a benign tumor. We'll keep you in our prayers.

[Dana M Simone]

Donna - your last words say it all - God is looking out for Jonathan, and it's wonderful that you have the faith to see it. I will be praying that Jonathan's surgery is uneventful and that you hear that the tumor is benign very soon afterwards. Keep the faith.

[maria vicenta carratala rios]

thanks for your update. my son had a bilateral nephrectomiie in December 2006, three months later to diagnostiqued ahus as a consequence the high blood preasure. He is the first little child in Spain with Soliris and kidney trasplant. His life has changed a lot , he is happy all the time and drink a lot a lot of liquids. During two months we has been in Hospital to observe the new treatment and the new kidney. The last week I went his school with him to do the exams. He did his school examinations in two days alone in a classroom with a teacher without child. and he has approveded with high note . This childs are very clever because they suffered in this life and they are more specials

[Donna Kolp]

Maria,
The bilateral nephrectomy is removal of both Jonathan's kidney's. Even though he has been on dialysis since 1996, we have tried to keep his native kidney's. Jonathan's blood pressure has been controlled with medication since he was first diagnosed with aHUS back in 1993. The reason for the removal is due to a solid mass growth on one, and a cyst on the other.
As far as transplant w/Solaris, we are waiting a little while longer for more progress since Jonathan is otherwise stable with Home Hemodialysis and FFP transfusions.

[maria vicenta carratala rios]

I do not understand theBilateral Nephrectomy in your message. My son has been four years in hemdyalisis because he suffer ahus and a high blood preasure, as a consequence doctors taken off the kidneys. ,He has received eculizumab and a new kidney in september. There is a little boy who is in hemodyalisis and take off the kidney as a consequence the Wills Tumor. He has three years only and he lost a one and halp kidney. He will received the new kidney in april 2012. If you want any information about this send me an e mail.