A little behind.....

Whew! Good thing my blog posts these days don't have deadlines! I have been an irresponsible blogger but as the time for the kidney walk of 2012 approaches, I believe it's a good time to get to writing. Where do I start? Oh yeah, life is amazing!!!!! I feel so healthy and free and have never appreciated life so much. I am campaigning for the upcoming 2012 Kidney Walk being held at Rhodes college on June 2. It is a 2 mile non competitive walk and all of the funds raised go directly to the National Kidney Foundation. They are an awesome organization. They (NKF) are actually the ones that sent me to Washington to speak to Congress about dialysis. I believe it is so important to continue to give to this organization because they aid in prevention, treatment and research. Kidney disease affects 26 million Americans. That breaks down to 1 in 9 people. Chances are, someone you know is or will be affected by kidney disease. I never thought in a million years I would suffer from kidney disease! But I did.....and with God's grace, awesome doctors in Iowa and Lindsey, I beat it. I want to see everyone beat it. Life is so precious....but when it's almost been jerked away from you and you make it through, it is EXTRA sweet the second time. Please consider donating. Any dollar amount helps! www.kidneywalk.org
I truly appreciate you all!

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.

Two Blogs in One Day?

Okay so I can't sleep. I have weaned myself off of every single med except anything transplant related. So, some nights I sleep and others I don't....but this is not me complaining. In fact, I have nothing to complain about. I am up with millions of questions running through my head. I have been on this transplant HIGH for 3 months now and everyday it sinks in a little more that I am like normal people again. I'm not sick, I don't have to carry a puke basin everywhere I go, I can stay up past 8 o’clock, my life is not dependent on a machine, my blood pressure is normal, labs are normal, I can eat anything....and boy have I! I have gained 22 pounds since transplant. I hope my transplant team will blame it on the steroids like I am:) Life is so awesome. The steroids do give me this invincible feeling at times, like I can do or say anything. My filter from my brain to my mouth is a bit jeopardized at times, but I am becoming more aware of it and controlling it better.

But in all of this glory and blessing I have been given, I also feel guilty. It's weird. Why me? I was told from day one on hemodialysis, I would never get a kidney transplant. Now I never believed that doc but I have friends still on dialysis. I have friends with cancer. I know people who are hungry, homeless or mentally ill. It's very hard to wrap your brain around the idea of, “I got a second chance, why not them?” It's almost the same feeling as when I was sick, "why did I have to get sick?" I have no answer for this but it makes me want to fight for the rest who haven't gotten their second shot.

I truly believe this....especially for myself: You can't truly enjoy life and understand the fragility and miracle of it, until you are almost without one.

I know I see things I never saw before. Feel things I never felt before. Actually try to take in every moment because in a nanosecond it can be gone. I almost died twice. And thankfully I have no memory of either time. I didn't see the light or anything like that. But when you are "back" in a state of consciousness where you can understand how close you just came to death, it really changes you. And after being given the gift of life via an organ transplant.....there are no words to describe that feeling either.

I just hope all of those on my mind get to experience this someday, hopefully soon. I believe if you have steady and strong faith, He will get you there. He has his own timeline. We def have no control in the matter. But He knows when the timing is right.

A Win for aHUS patients

I apologize to anyone who is following this blog. I have not been faithful in my postings, but I guess that is what happens when life gets back to normal. Between working, all of my child’s afterschool activities and just daily life chores.....it is hard to find time to blog. I do however, have wonderful and great news to share. The drug I am on called Soliris has been FDA approved for the treatment of atypical hemolytic uremic syndrome in children and adults! This is such a huge milestone in the world of medicine and pharmaceuticals. Although I have been blessed to have access to the drug since my transplant in June, I must admit it was a daunting feeling knowing that the government really didn't "approve" of me using this drug. But now it is official!!!! And what I think is even more awesome, is that future Jill's, Alyssa's, Linda's and Hyde's may be able to altogether avoid kidney failure. Who knows what would have happened in January of 2009 when I presented to St. Louis with this disease. I remember them talking about trying to get the Soliris for me then and try to slow the kidney failure, hemolysis, dropping platelets and everything else that was going wrong inside of me, but the drug wasn't FDA approved for my blood disease. I don't dwell on the "what ifs." I think my life turned out the way it was suppose to and I think kidney failure was a chapter in my life for many reasons. I am glad I was a tiny part in the beginning stages of getting this drug approved. And I am (more than words can express) thankful to Alexion, Iowa, the Biermanns and so many others who actually made this happen. Many of you, actually probably all of you, will never know what I am talking about and never have to experience this (thankfully)! But there is a "one in a million person" out there who will. And now their road to recovery will be shorter, less bumpy and possibly avoidable altogether! Praise God from whom ALL blessings flow!

Well, ER....so we meet again!

Friday night, August 26, I had myself a little visit to the local ER. Before I alarm everyone, I am perfectly fine. But Friday night I wasn't so sure. I was vomiting, diarrhea, massive headache, stiff neck and low grade fever. All of these are signs of my migraines but also signs of meningitis. So, I took a migraine pill as I was instructed by Iowa. When my migraine pill failed to work, I went in panic mode. One of my post kidney transplant meds put me at high risk for meningitis. So, if I even think I might have it, I have to go to the hospital. This is the LAST place I wanted to go because if I didn’t already have meningitis, then I was probably going to catch something else in the ER. The ER was very quiet that night and they got me straight back to a private room. They did labs, urinalysis, observation and CT scan. Everything looked good in my favor and the ER doctor saw no reason to do a spinal tap.....thank you Jesus! So, I had a little scare but everything is fine. But I will continue to be on the lookout for any signs of Meningitis because that is something I do not want to mess around with!

Oh and before I forget, thank you to my HH nurse for taking me to the ER and staying with me until my mom arrived. I am so thankful for you and you went above and beyond the call of duty Friday night!!! xoxo