Thank You......

Not sure who from the Nephrology Dept at Iowa sent me these beautiful flowers but it totally made my day! I love them and am so thankful! Thankful to be a part of the Soliris panel and thankful to be able to call the University of Iowa Hospital and Clinics, my transplant center! Thank you so much!

What's Next?

Today I stayed home from work because I have caught a stomach bug. I am sure it will be gone soon, might just take me a little longer to kick it than the average person. I got very dizzy at work Tuesday and began vomiting. I then took my BP and it was on the high side. So I came home early that day, took my BP med early with a phenergran and went to bed. I stayed there until I had to get Mad ready for school, dropped her off and returned to bed.

Anyway, why laying there today I kept thinking of the conference and the kids and their families. I feel like there is so much more to be done. In the past, I was really sick myself so I didn't have a lot of extra "brain time" to take in a lot of the Foundations website. But now I feel better and am ready to help in any way I can. In my professional life I work with children and I feel like God is calling me to take my skills and help the children with aHUS. I am not sure how or what I can do from Arkansas but I know God has a plan. So I am praying about that, leading me in the right direction. It may be as simple as being a mentor to these younger children or their families. Not sure what God has in mind yet but I am listening with an open heart. I feel like I got off easy compared to all of the sweet Hyde's out there. I just feel compelled to do something, anything to help these families and the future adults who will have to deal with aHUS. If anyone out there ever has questions or you just want to vent just call me. I’m not a professional in the field of nephrology but I am a professional in the first hand experience of aHUS. If I had not had Alyssa to listen to me during the bad times and my family and friends here at home, I wouldn't be where I am today. My email is jillnziegler@yahoo.com I'll give you my cell # and we will get through this together. But in the meantime, God will lead me down the right path to help others. God Bless you all!!!!

The Wonderful World of Iowa

Call me crazy, but Iowa City is magical to me the way the Emerald City must have been to Dorothy. I absolutely love this place. Of course, I am sure it has a little something to do with the fact that my fabulous team of doctors changed and saved my life there. I love going back for my follow up appointments. This past weekend was extra special. I had so many wonderful things happen in a 48 hour period.

To start the weekend off, I had my 3 month follow up post transplant with my favorite doctor ever, Dr. Thomas. Now not to offend any of my other fantastic doctors, I had some great pre transplant doctors and of course without the talents and miraculous hands of Dr. Alan Reed, I wouldn't even have this beautiful kidney. I honestly believe with the strange things that happened that day of transplant in the OR, had I not had Dr. Reed as my surgeon, I do not believe the transplant would have gone as well. Just my opinion....and I realize I am a bit biased. But back to Dr. Thomas. Just being in the mere presence of this man makes me feel safe and that my kidney is being well taken care of. I think having a doctor that can make you feel comfortable, safe and that you (the patient) can 100% trust, is one of the most important factors in this whole process. Not to mention, he is a complete genius and I am so blessed to be able to call him my nephrologist!



Second, this weekend was most special because I got to meet my soul sister who held my hand (long distance) and together we walked through the fire of ahus together. I finally, after 3 years, met Alyssa. She is so beautiful, brave, kind hearted and was my strength through the very dark days of ahus. I watched her in her sickest days, I watched her go on PD and watched in October of 2010, as she got her new kidney. She was my inspiration throughout the long and tumultuous road of ahus and this weekend we got to meet and celebrate our miracles of healing and our new lives together. I don't know how I would have made it all those years without her! I love you Lys!!!!



And last, this weekend came to a sweet end for the Ziegler family as we got to attend the conference held at the University of Iowa for the Foundation of Children with aHUS. I met so many wonderful people that I have talked to and has helped me get to this point in my life today. I also got to meet people from the company, Alexion who are the pharmaceutical masterminds, which invented my miracle drug Soliris. The conference was full of knowledge and empowerment for patients and their families suffering from this disease. Meeting everyone felt like a family reunion....and really it was. Nobody understands what aHUS is like, quite like the people at this conference. It was a true blessing to be there and also speak at the conference.