latest Ben update

[MARCIA AGUALLO BAKER]

Hello everyone! Ben is still holding his own and is such a fighter. He had a really rough night. They tried to decrease his Lasix and developed fluid in his lungs again. He still continues on the Milrinone IV heart medication and 3 other blood pressure medicines. He is on a total of 2 diuretics, a seizure medication, and iron supplement. They had to do 2 more pheresis treatments and tryin to find the right balance has been very difficult. They are discussing the Soliris drug again but not heard anything else about it. I wonder if he gets on the drug if it will balance everything out and things will get better. They say because of the severe heart problem, they don't know how the medication will affect the heart. What is all of your thoughts on this? Thanks for your advice and as always you guys are the best.

[Kerri Grey]

As the others have said if he gets the solaris and it helps to repair the tissue damage in Bens kidneys then hopefully the fluid problem wont be as much of an issue which may also take some of the pressure off the heart as well. I pray that your family amlong with the medical staff find the right answers!!!

[Heather Still]

Praying for your family.

[Grace]

As you say, the fluid balance is very delicate, and any IV drug will require some adjustment in fluid balance. Hopefully, Soliris should stop HUS activity, allowing a healing space for damaged tissue to repair. But as you know, there is still much to learn about this disease and how best to treat it. I pray Ben's family and the doctors and nurses receive right guidance and wisdom to make the best decisions for Ben. Echoing Cheryl, we will keep praying.

[Cheryl Biermann]

PLEASE-it can't make anything worse, can it? I think especially because the drug is also having the surprise effect of working like a immuno-suppressant, he will eventually recover if he gets the drug. The heart may not recover, but they may not need to give as many immuno-suppresants because of Soliris, (Ecluzimab). The aHUS will continue to reactivate causing trouble with all sorts of things...fluid control is especially hard during its flares. May God guide you and protect Ben, may he inspire Ben's doctors to give Ben the best possible treatment.

Ultimately, when they are as weak as Ben, from all the courageous fighting he is doing right now,even with proper treatment, it is the prayer that will sustain him so the medicines can have a chance to do their work. We, as your new aHUS family are up for that challenge, we will keep praying.