Finally! It has been 7 months since I found out my kidney is failing, 5 months since my first visit with Dr. Cool Whip and 4 months since I started my pre-transplant evaluation and I am FINISHED!!! There were several times during this process when I thought this day would never arrive and it took every ounce of strength and patience I had to keep chugging along, but the day has come at last. I completed the last of my tests this past Monday, an ultrasound of my legs with no sign of Grumpy McNo-Fun (!), and gave Sandra, the transplant coordinator a call on Thursday. To my surprise, she said that she would be able to present my case to the transplant team this coming week. They will meet this Thursday to decide if I am an ideal candidate for transplantation and yes, I am a nervous wreck. While no one seems to think there would be any reason for them to deny me, it is virtually impossible to predict the outcome. There are three possible scenarios...they can approve me, deny me, or deny me for now. My main concern is my creatinine clearance, which is right on the cusp. In order to list, they like you to be 20 or below. When we last checked mine, it was 24 and Dr. Cool Whip most recently estimated it at a little under 21, so it could really go either way. Obviously, I wouldn't be devastated if they decide to wait for that number to go down to list me, but it really isn't the answer I am looking for. Ideally, I would like to list now while I'm still feeling relatively good than to wait until I'm knocking on the door of Mr. Dialysis. Plus, as soon as I am listed, those who are interested in donating a kidney can begin getting their evaluations, thereby increasing my chances of skipping dialysis altogether. I realize this is the best case scenario, and the chances of this happening are slim...but a girl can dream.
But, it is out of my hands now. I've done all I can do, and it's up to the transplant team to decide. Luckily, my vacation to Florida is this week, so I will be entirely too busy planning, packing, and relaxing to worry and over analyze. I have good friends to visit, sunshine to enjoy, dolphins to swim with and rides to ride. And hopefully, I'll be bringing back a bit of good news!
Sunday, January 17, 2010
My Deja Vu
It is difficult for me to remember a holiday season in my life when I have felt 100% healthy. Maybe it was the anticipation of a living room full of presents, but when I was a kid, I was sick every Christmas day without fail. Flash forward to Christmas 1995. I was deathly ill, sleeping up to 20 hours per day, throwing up anything and everything I ate and being treated for a "stomach ulcer." Three days later, I was diagnosed with end stage kidney disease and had begun preparing for a lifetime of coping with a chronic illness. Two more years go by and the dialysis wasn't working as well as it once had. Pictures from that Christmas show one very tired, pale and puffy young Dawn. Two days later came the call I had been longing for: a kidney was available with my name on it. Less than 12 hours later, I had a brand spanking new functioning kidney.
It should have come as no surprise, then, when I awoke this past Christmas morning feeling like a pile of poop. My stomach was in knots, I had absolutely no appetite and barely enough energy to haul my butt out of bed. This time I was convinced the culprit was medicine related and did not signal impending doom. The week before, I had received a call from my new BFF, Denise, who told me that while my hemoglobin came up to a whopping 8.6, my iron had dropped nearly in half. Not good. As a result, Dr. Cool Whip had prescribed an iron supplement to attempt to bring it up some. Iron is notoriously difficult to take, so when I started feeling horrible, I was quick to speak up and request to stop the medicine. After a week of being iron-free, however, I wasn't feeling any better and panic started setting in. I was worried that the kidney had bit the big one, so I had Dr. Cool Whip run some tests. The good news was it wasn't the kidney. It looks as though it is holding strong and my levels have been stable since June. The bad new was, we still weren't sure what was causing me to feel sick. We finally settled on a virus of some sort and went with the old "wait and see" course of action. It seems like we were right because for the past week, I have been feeling a little better each day.
Unfortunately, though, I am still not taking the iron, and without iron, the Epogen injections will not work as well. Not that the Epogen had been doing much to begin with. In the four months I have been taking it, the most it has done has been keeping my hemoglobin steady which would be awesome if my hemoglobin had started out at say, 12.6 rather than 8.6. So, I am finally getting a higher dose of Epogen. In fact, they are more than doubling it...from 40 mcgs to 100! I will eventually have to start back up with the iron, as well, but probably at a lower dose. For now, we're just going to see how the new dose of Epogen works out. My first shot with the new dosage will be this week, and I couldn't be more excited!!
It should have come as no surprise, then, when I awoke this past Christmas morning feeling like a pile of poop. My stomach was in knots, I had absolutely no appetite and barely enough energy to haul my butt out of bed. This time I was convinced the culprit was medicine related and did not signal impending doom. The week before, I had received a call from my new BFF, Denise, who told me that while my hemoglobin came up to a whopping 8.6, my iron had dropped nearly in half. Not good. As a result, Dr. Cool Whip had prescribed an iron supplement to attempt to bring it up some. Iron is notoriously difficult to take, so when I started feeling horrible, I was quick to speak up and request to stop the medicine. After a week of being iron-free, however, I wasn't feeling any better and panic started setting in. I was worried that the kidney had bit the big one, so I had Dr. Cool Whip run some tests. The good news was it wasn't the kidney. It looks as though it is holding strong and my levels have been stable since June. The bad new was, we still weren't sure what was causing me to feel sick. We finally settled on a virus of some sort and went with the old "wait and see" course of action. It seems like we were right because for the past week, I have been feeling a little better each day.
Unfortunately, though, I am still not taking the iron, and without iron, the Epogen injections will not work as well. Not that the Epogen had been doing much to begin with. In the four months I have been taking it, the most it has done has been keeping my hemoglobin steady which would be awesome if my hemoglobin had started out at say, 12.6 rather than 8.6. So, I am finally getting a higher dose of Epogen. In fact, they are more than doubling it...from 40 mcgs to 100! I will eventually have to start back up with the iron, as well, but probably at a lower dose. For now, we're just going to see how the new dose of Epogen works out. My first shot with the new dosage will be this week, and I couldn't be more excited!!
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