The Atypical HUS Foundation

I am a 38 year old mother of 3 great children.  Just before Easter this year, I was admitted into the hospital.  Originally I went to the Doctor because I was having clotting in my nose, severe headaches, and vomitting.  The Dr. did a CAT scan of my head to make sure there was nothing going on there because of the headaches.  He also did lab work.  The lab work came back and I was in acute renal failure.  My creatinine was 10.6 (normal values are up to 1.3).  He admitted me to the hospital and they started running tests.  I had a kidney biopsy done and was started on plasmapheresis and dialysis right away.  The biopsy results first came back as TTP.  Several days later was when they said no it was aHUS. I had 14 pheresis treatments before I started on Soliris.  I spent 3 weeks in the hospital.  

Currently, I am doing hemodialysis 3 times a week, but I am meeting with the surgeon today to change to PD.  I hate doing HD.  Sitting in the dialysis unit 3 times a week for 4 hours just isn't for me.  Plus, it wipes me out.  I feel horrible on my dialysis days.  I am excited to start PD, I have heard it is much easier on the body.  My Soliris infusion is now at every other week.  It doesn't bother me much when I get the infusion.  I've noticed I have more headaches now, some are pretty severe.  

I was 5 weeks away from graduating from Dental assisting school when I was diagnosed.  That has been put on hold for a while.  I had to give up my job.  I am pretty much tired all the time.  I have a lot of sinus drainage now and have a lot of foamy saliva in my mouth.  It's pretty nasty.  I haven't figured out how to get rid of it.  I'm on a very bland renal diet.  I have to be careful about how much sodium, potassium, and phosphate I take in.  I am limited to 32-40 ounces of fluids a day, so I constantly feel dehydrated.  

My wonderful husband drives me all over town to all my appointments.  He has now become mom and dad.  He has taken over all the shopping, cleaning and everything else I used to do.  He is amazing.  My kids are 15, 12, and 6.  They are doing okay with this.  The two older ones understand better than my 6 yr old. 

Each day brings something different.  But it could be worse, if they hadn't worked so fast to find a diagnosis I may not be here today.  I am ready to get my life back though.  I know it will be a while before I have the strength and energy back.  We haven't even started getting the hospital bills in yet, so I worry about the bills.  

Well, that's my story up to today.  

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Comment by Kristen Bruner on July 25, 2013 at 6:42pm
Thank you Phyllis. I've been on PD now for 2 months. I'm doing better now, but still very little energy. I've been having chest pain lately too, but all the tests come back normal. I hope your son is doing well.
Comment by Phyllis Ann Talbot on May 23, 2013 at 1:43pm

Welcome Kristen and so sorry you are on this journey with all of us!  My son also has AHUS and he did MUCH better on PD than hemo - we did PD for almost 3 years (he became ill prior to Soliris being available) and we really rocked along during that time.  He was transplanted 2 years ago now and continues his Soliris infusions every 2 weeks - I do them myself at home for him now.   Best wishes and yell if you have any questions - there are ALOT of folks on here with alot of experience with both hemo, PD, and even home hemo.



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