Ok, so that first hospital stay was a whirlwind. I had been diagnosed with TTP and acute kidney failure. They considered it acute until about 3 months and then you are considered chronic. I was in the hospital for 10 days that first time around. And by the time I was released my diagnosis had changed to atypical Hemolytic Uremic Syndrome. It is a 1 in 5 million disease. ????! I mean, come on! Everyone wants to feel unique or special but not like this! I talk to God everyday about what in the world He wants to come of all this. He doesn't let you have an ultra rare disease for no reason. I keep holding on to Hope that He is going to heal me, from all this. And I'm going to tell my story, about the mercy God showed me and the miracle He allowed me to be a part of.
Anyway, trying to think back on March- May is a little fuzzy. I was medicated, ALOT, and so sick. Dad would later tell me about doctor visits or conversations that I was apart of but I could not remember due to being so doped up and high. During the first hospital stay I stopped eating and by the time I got out the second time I had lost 30 pounds. (I could spare to lose it) I was so weak I couldn't walk by myself or hold Eloise. It was a hard time. Dad would sit in the hospital with my every day while Joey was at work and hold my hand. He would advocate for me when I couldn't talk. He would constantly be tucking me in, making sure I was warm enough. Or had enough pillows. Or had enough to drink. He just sat there, praying. Sometimes crying. I had never seen my dad looking so defeated. He felt helpless, and my dad is never helpless.
After I was released from the hospital the first time, I was set up to do outpatient plasmapheresis at the hospital everyday. One day my nephrologist came in to visit and said that a pharmaceutical rep had been in a few days before and was promo-ing a drug called eculizumab (Soliris) that was to specifically treat aHUS. He said it is half a million dollars a year. We had a good laugh about it because I thought, a brand new drug, just released for my disease, $500,000 a year? I'm not the type of person so get into something that expensive. Well, at the time I didn't know that this disease is lifelong and incurable. And that if left untreated, would kill me. My hemotologist was scratching his head, because the only info he had on the disease was whatever we read on the internet. He had never had a patient with aHUS before. In fact, at this time, I'm the only one in Lafayette with the disease. I heard about Soliris, and it went in one ear and out the other. It just didn't register with me that I was dying and needed a more permanent treatment. In between the first and second hospital stay I went to visit my hemotologist and he told me he thinks I need to try Soliris. He had talked to a hemotologist buddy in Ohio that had tried it on a patient and it was successful. My doctor was practically jumping in his chair trying to convince me to get on this drug. I would have to get a meningitis vaccine because the drug suppressed the immune system in order to control the disease. I was so hesitant about that...we don't do vaccines. But after a few days of talking it over with the family we decided to go for it. You have to apply to a program and of course be recommended by your doctor. My doc contacted the company that produces the drug and got me all hooked up. Alexion Pharmaceuticals makes eculizumab, and every patient in the program has a case worker. Pam is awesome. She calls me every couple of weeks to ask me about my labs, how I'm feeling, is everything going smoothly, etc. She was able to explain in great detail what all my disease entails, what eculizumab does to suppress it, and best of all, it brings kidney function back about 50% of the time after 10 months of use. That's what we're praying for for me. Anyway, the drug is administered intravenously every 14 days. I am a super hard stick these days so in July I had a port put in my chest that is now used for my infusions. Because there is no cure for the disease, I must be on Soliris for the rest of my life. Remaining on the drug will also insure that once a transplant takes place, the new kidney won't be hit by the disease. I have my infusions at home. A IU home nurse comes to administer the drug. The first time we did it at home I took a good look at the invoice. The cost of Soliris is $58,417.92 per treatment. Not half a million like we thought (which was ghastly to begin with) but 1.5 million!!! It is literally the most expensive drug in the world. I googled it ;). So April 4, 2012 I began Soliris, during my second hospitalization. And as far as we can tell, it's doing it's job. I'm praying that I'm one of the 50% that regain kidney function after 10 months. And because of that statistic, the transplant team won't consider transplanting me until after the new year. I'm not their typical renal patient so they got on board and want to see what Soliris can do.
If you are a prayer, I ask one thing. If you were going to pray for just one thing for me, pray that I am attentive enough to listen to God, and hear what He wants to come of all this. I know there's a point, to bring glory to His name, praise God. I just hope I get to see the results of this trial.
Wrapping up, sorry for such scrambled rabble. The family is going to look at a house that mom and dad are interested in!
