Me: Hi Santa!!
Santa: Ho! Ho! Ho! What would you like for Christmas?
Me:A puppy, a dollhouse, a new kidney, a Sonic video game but not just any Sonic game it must be the third one with Knuckles!
Santa: Wait, what?
Me: Sonic Three!
Santa: No, not that, a new what?
Me: Oh, a kidney! I would like a new kidney please.
Santa: ..... Here's a lollipop! Now, smile for the camera!
My parents then taught me about the waitlist. The incredibly long, loooong waitlist for a new kidney. I asked them if I could get on it. They said I still had one good one. My left kidney. I finally have a name for her. My left kidney's name is Phyllis and that's how I shall refer to her from this point on.
Phyllis began to shut down back in 2008, right after my last bowel surgery. The surgeons removed 14 inches and tapered 12 inches. When I woke up from that surgery, I shouted, "I can't feel myself peeeee!" I was so looped out on pain medications and nauseated that I kept my eyes firmly shut so I wouldn't projectile vomit on everyone within five feet of me. Someone slipped one of those bedpans underneath me. I relieved myself but I was still worried about the lack of sensation. Turns out bladder damage was considered a surgical risk and I already agreed that if anything were to happen then it was not anyone's fault so there wasn't anything I could do except to just deal with it. My post-surgery stay lasted for ten days. I should have stayed longer but I was determined to make it to my first day of 12th grade! Mostly because I am extremely shy and hate to ask people on the very first day to please move so I could claim the front and center seat in each class. I am hard of hearing and need glasses to see, so, yeah, being close to the teacher and the board is extremely helpful to me. I was in total agony in the hospital. I thought maybe it was just my guts recovering from the major surgery. Then I went into the bathroom and peed on the tenth day. I looked in the bowl and saw blood. Lots of it. It made me nauseous. Quickly, I flushed away the horrible sight and rejoined my loved ones.
I told the doctor I was definitely ready to be discharged. He gave me this look that pretty much said, "Bull. You are still extremely sick but since you are a stubborn girl I'll let you learn the hard way just this once." He signed off the discharge papers, I went home, stayed on the couch for three solid days, then went to school in a wheelchair because I was no longer able to walk from the pain and nausea. But hey, at least I could finally feel myself pee again! My mom knew I was very sick. She did everything she could to convince me to stay home, even go straight to the hospital instead of school. When we got to my campus, she got me into my chair. I was about to wheel myself off to my first class when she insisted on pushing me. I shrunk in my seat as she took me to the nurse's office. I begged her that it was not necessary. I knew where my class was but she wanted to let the nurse know I just got out of the hospital. This school nurse knew me quite well because of my constant bowel obstructions in previous years. I saw the school nurse at least once a week, perhaps even daily. After my mom and I met with her, my mom then insisted on taking me to my first class. As a teenager, almost an adult, this was very humiliating to me. She even walked me in front of the entire class and got me all set up. Under any other circumstance, I would have been grateful. But at that time I just wanted her out immediately. I was too petrified to use my voice. She gave me my notebook and a pencil. I looked at the question at the board. It must have been something extremely simple in that English class such as "What did you do this summer? Please explain in at least half a page." But I couldn't read it. All I read was "What did yo..." I couldn't focus. I turned my head to look at my other classmates. Suddenly I felt nauseas again. Since I did not want a custodian to come in and mop up my puke on the very first day, I rose my hand and asked to be taken to the nurse's office. Yup. I couldn't last one hour at school. Later that day I was in the hospital with a creatine of 6.7. The doctors talked about dialysis. Somehow, over the next ten days, my kidney actually got better. The creatine dropped to 1.8. I dodged dialysis.
As the years progressed, my kidney's health began to decline once more. It is more like a rollercoaster than anything else. Phyllis has her good days and her bad days. Still, the possibility of dialysis is getting pretty close. My kidney doctor, the nephrologist, has finally deemed me ready to start my epic quest towards getting on the waitlist for a new kidney! I am currently in the evaluation process. I started at one hospital last November but they turned me away because I am too complex for them. I need more than just a transplant to make this whole thing work because of my other health conditions. Just because one hospital said no did not mean I was going to be on dialysis for life. I continued my search. I have found another hospital. For now, I'll keep the hospital private but if anyone wants to know, just leave a comment and I will find a way to email you. This place is pretty great. They are very versatile and have taken on lots of other VACTERL patients. So, these folks know what's up. They understand that one condition affects another and need to be careful with whatever medications they might give me or whatever treatment they put me through. They can give me a new kidney and quite possibly repair my bladder!
The hospital has agreed to start the evaluation back in August of this year. They gave me a list of eleven different procedures and blood labs to complete before I can resume the evaluation process to even be considered to get on the waitlist. Since I only need to see a urologist surgeon to evaluate my bladder, I am pretty much done with the list. I even already have a possible donor waiting! However, it is still going to be a very long process. Several doctors have told me that with my set of conditions, it is best to get a new kidney before dialysis because once I am on dialysis my body may not be strong enough to withstand a transplant surgery. My last hospital visit was on October 7th and I got extremely close to dialysis once more (creatine hit 5.3) but I dodged the bullet once more. So, no pressure, right?
There you have it, now you all have been introduced to my ileostomy and Phyllis. These two play a huge part of my medical life.
Until next time! Here is another funny comic:
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