Well, 2010 has come and gone and still no kidney. I have appealed our insurance company twice now, with the incredible help of my Iowa doctors, and both times they have denied me the drug I need for the transplant to be a success. It is very upsetting because two years ago when this whole nightmare began there were no options for transplant. Doctors simply did not know enough about my aHUS and how effective a transplant would be. But that has all changed now. Several people around the country, including a very dear friend of mine I have met during this journey, has received a kidney transplant using the drug Soliris and it has been a success. So until recently I had no options but now I do. I am about to embark on the mission of my life. If a kidney transplant is possible and has been successful in others, there is no reason I should not be given the same opportunity. I have done two years of dialysis....my anniversary will be in a couple of days. But I am tired of dialysis. Tired on being hooked up to a machine for 8 -9 hours a night. Tired of having to be in bed by 8 o'clock. Tired of the strick diet. Tired of weekly shots. Tired of pills. Tired of worrying about ordering my monthly supplies which take up an entire room of my house. Tired of vacations being a hassle because I have to drag a machine and a weeks worth of supplies with me. Tired of only being able to work 3 hours a week when my therapy kids, who need me more. Tired of puking everyday. Tired of blood pressure either so high I might have another stroke or so low I can't stand up. But most importantly I am tired of NOT being the type of mom and wife I am meant and can be. So while we are all making new years resolutions, I am making a promise to myself. I will leave no stone unturned when it comes to getting that very important life saving drug approved for me. Of course it is expensive, but can you imagine how much money it has cost to keep me alive over the past two years...not cheap. And it has been expensive not only financially, but physically, emotionally and spiritually. So, 2011 I am digging down deep inside me, ready to fight and determined to get a transplant. I have a fabulous transplant team waiting on me and I have potential donors. If doctors said it wasn't possible or if I couldn't find a donor, then I might would give up....but because it has to do with money, I can't let my life be put on hold or possibly die because of money. My life is more precious than that! And I have a little girl who needs me.
I hope I don't sound bitter or like I have a case of the "why me's". I know exactly why I have been given the opportunity to have kidney failure and even after I get a transplant I will continue my mission of being an advocate for patients rights. In many ways it has been a bitter sweet blessing, but I am ready to move on and start a new chapter. And I need to be healthy and well to do just that. I would not trade the last two years of my life for anything. I have learned a lot. But I must be honest, I am ready for it to be a memory and not my daily life. So , I will pour my heart and soul into making a transplant happen for me. Time to be my own patient advocate.
Happy New Year!!!!!
Linda Burke left a comment for Jeff Wilhelm
2 months ago