Wednesday, June 2, 2010

I was born with one kidney... part two.

I woke up about thirteen hours later, with a 7 inch insicion and 37 staples in my abdomen, a crazy IV in my NECK, and a wicked bad case of dry mouth. Some of the Nurses I had that week in ICU and two weeks in 3W literally saved my life with their compassion, tricks, and tips. One of my fondest hospital memories involves my dad sneaking me Mike and Ikes to suck on during the week I was prescribed not to eat anything for fear of nausea. Our family and friends made survival possible that month, with rides to school for my younger brother, house and pet sitting, and an unbelievable Chirstmas set up to keep us believing in Santa, because my parents did not have the time and money to do it themselves.

We were ordered to stay closer to stanford than our house was, so we were set up at the Ronald McDonald house for a month and a half or so. Another home away from home, we had beds, and a kitchen with a pantry, a helpful staff, shuttle service, and tons of prizes and presents to keep me happy, we went to stanford for blood tests daily. I built some solid friendships with other "sick kids" and my family somehow survived the worst thing that could happen.

I had to have frequent blood tests and biopsys, but as the scars started to fade, and I started getting to a heathy weight, the crazy things I had to do each day (including taking my blood pressure, drinking 3.5 liters of water daily, and consuming a plethera of immunosuppressive pills) started to become our normal and we got used to it. It was what we had to do, what I had to do.

Everything went smoothly and there were little-to-no complications for nine years. Until last July when we got a bad call. Again. Another call that would throw our lives into a similar panic. My cratinine was high (which means kidney fuction is low) and we were facing our first case of rejection. That panic has become the last year of my life, and has included the entirety of my summer being spent in the hospital, (and part of my fall as well) some emergency room visits at odd hours of the night, headaches so bad I was throwing up, 6 rejection treatments that all included a slough of unbearable side effects, over a thousand bajillion IVs, (my veins aren't what they used to be) some rough moments in Isolation, and a couple of blood transfusions. That doesn't even begin to cover it, but I don't feel like writing seven more pages right now.

In February this year, I was given news that is still hard for me to swallow. After completing one of my terrible immunosuppressive treatments, Rituximab, and being sedated for yet another biopsy, I was ready for the final report, and to be released from the hospital. Again. I was never really alone in the hospital, I always had dad, mom, brother, friend, uncle, grandma, someone. When the doctors walked in I was all alone and just as upbeat as I always am, excited that I would probably go home! Dr. Steven Alexander came in and shared that he had "good news, and bad news." and asked which I would like to hear first. I quickly responded with "Uh good, duh" and he responded "The good news is, there is no longer any sign of rejection" i was overcome with joy. THIS WAS WHAT I HAD BEEN BATTLING FOR ALMOST A YEAR NOW. oh. my .gosh. Was pretty close to my reaction, until he started in again, with the bad news. "The bad news is, your kidney has retained too much damage and scarring, and cannot be saved. you are going to need another transplant." what. the. fuck. is more like it, this time.

5 comments:

  1. Stay strong!
    I know a little too well the kidney/dialysis road isn't an easy one. I may not know you but I can sympathize with you and I am sorry you've had to go through these rough times. I will keep you in my thoughts and follow you through your journey.

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  2. Congrats on starting your blog. It is already bookmarked. I will follow you here and think of you in my heart. How brave you are, and have to be.

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  3. Wow, that's a hell of a load for a kid to deal with; Lots of kids out there crying the blues over their near perfect lives and here you are, struggling along, grateful and joyful.

    Barely knowing you and yet admiring your strength of character. I will keep reading along with you,
    Lynda

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  4. Welcome! My name is Jeff. My friend Leah directed towards your blog. I may see you at Stanford sometime as I am usually upstairs from Nephrology in the Cardiology Dept.
    As for me I am a heart transplant who is awaiting my to be listed for a second heart transplant with a kidney this time around. Glad to see transplant blogs as I can so relate. I may have to start bloggin more from my perspective!

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  5. hey Jeff! I, unfortunately, no longer am recieving care from stanford. When i lost the kidney i no longer got to go there, because kaiser has a childrens contract with stanford and adult contract with UCSF. Right now i'm attempting to be listed at UCdavis. good luck with getting the heart/kidney! go kidneys! woo!

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