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!