The Atypical HUS Foundation

Issues with Soliris Infusion through Home Health Care

Hi! I need some advice. My son Will is getting infusions every two weeks in Atlanta. Initially, we thought he would be able to get infusions via home health care, but so far we are having trouble getting companies to agree to the terms. I have been talking with a case manager at Soliris and a representative from Egleston Children's Hospital. We keep hitting a dead end. Do all of you have to travel long distances to be able to receive your infusions. We have a four hour drive to our Children's Hospital. Any advice would be appreciated.


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Comment by Kerry Waters on May 24, 2014 at 10:52am

Thanks for the suggestions. I have been in close contact with Will's Soliris nurse case manager. We are thinking we may have to just set up his infusions at a hospital closer to home. He did use Angel Flight for his trip 4.5 hour one way trip for his infusion this week. It was a cool adventure for my 19 year old! It still turned into a day long adventure, but it was much easier on family members who were having to accompany him on the long drive. We are so thankful for their services! 

Comment by Diane schaller on May 19, 2014 at 1:50am

We had home health care right after our then 8 year old was diagnosed.  It was fine when she had a PICC line, but turned into a disaster once she got her port.  They seemed to be very qualified, but I think most of the nurses worked with the elderly.  After four attempts and two nurses, we are now at our Children's hospital (which, fortunately, is very close to us,)  My only advise is make sure they have experience with accessing a child's port and they know current size needle to use (the nurses at the Children's hospital thought that might have been their problem.)   Good luck!  

Comment by Phyllis Ann Talbot on May 15, 2014 at 8:21am

Kerry - txt me if you want - we set up Hyde with home health prior to me starting to do his infusions myself and I know several others in the Atlanta area that use home health?  I know you guys are further - so there would probably have to be a different company but should be easier in some ways because our problems were in finding someone who could do ped's - assuming Will could use an adult provider?  Let me know if the problem is finding a company or getting it covered - Coverage wasn't as much our problem for access - but then it's an issue of whether it goes against medical or pharmaceutical benefits.

Comment by Jen Garceau on May 14, 2014 at 8:37pm
I am in the process of getting home infusions as well but my hold up is my local Home Health Agency dragging their feet. I receive Soliris weekly and have a 45 minute drive (not even close to yours) and I'm over it. It's an all day affair for a 35 minute infusion



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