Friday, November 20, 2009

My health rollercoaster!!

Man what a week. Let's see were to start? Well, let's start form the beginning. Monday I had my routine labs done, and then took my frist solo trip to my Green Bay Transplant Clinic appointment. It took me like 30 minutes to get there. I only had to sit for maybe only 5 minutes to get in and to weigh-in and then get my vital signs checked. After that my PA came in and she had me lay on the table to look at were my kidney is, and to check my breathing. Then I sat back down in my chair, and we started talking about my labs. Okay my creatnine has been flucuating (going up and down) and my antibody level came up a little bit. Well, she got concerned and went to talk to my doctor. I was like son of a nutcracker. No don't talk to him. He will have me come down to Madison like right away. But that wasn't the case. She said that they wanted be down to Madison within the week to do a kidney biopsy. I should have taken that as a clue that my doctor wasn't freaking out, so I shouldn't. Umm that wasn't the case in my head. My train of thought always go to the worst.

So I went to talk the lady that was going to schedule my biopsy. I picked the date for Friday of last week obviously. So I talked to my dad when I got back from my appointment. He told me that he is not able to take me down there. He will not be able to take off since most of the guys down at his work took off for gun hunting. So I put a call into my aunt Jill to see if she would be able to take me down there. And low and behold she was able to take me.

Now it is friday! The night before my biopsy I was all jittery and nervous at Ryan's. Pretty close to tears when I would talk to Ryan about this. I was freaking out. But he kept telling me that they won't keep me down there, that it is only antibodies causing all this chaos. And he was right. Man is he smart. I only got about 3-4 hours of sleep the night before. I had to wake up at 4:30 am to get myself ready. My aunt came over at 5 to pick me up. Then we took the 2 hr and 15 minutes trip down there. I normally fall asleep on the way down there, this time I didn't. Because I knew she didn't quite were she was going. I got us there with directions, and I got my labs and then went downstairs to clinic to get checked in. Then we were in the clinic for like 8 hours at least. Man that sucks. It was so boring. Then I got wheeled into the Biopsy Room, with my aunt in tow. Kidney has good blood flow (Pfew on that), and then my doctor came in. Another sign I should have relaxed more. He was telling me that he thinks it is just my antibodies causing all this. He was going over all the options that we can do, if that is the case. I should have believed him. But I think with him saying that, I relaxed or my relaxtion had to do with the sedation they gave me. Man it knocked me out afterwards. But only for a freaking hour. I think I kinda remember my aunt telling me that she was going to get lunch. I don't know. I woke up to Roseanne's voice on the tv. I can't get off the bed or move too much for 4 hours. Remote was over by my aunt's chair. I think. Anyway's I woke up thinking were did my aunt go. Did she go wandering?

I should have known better about her wandering. She has never been down there before. She would have gotten lost. So the first hour I had to lay literally flat with vitals getting checked ever 15. Then after the first hour my head got propped up and they brought in a bag lunch. Sorry I have to say this Madison! Your food is normally AMZING! But your bag lunches SUCK big time! I mean you get raw veggies (always freaking frozen) my radishes had ice chips in them and wow were they cold on my warm teeth, a cup of honey dew, and a turkey sandwich on wheat bread. Okay I love turkey, but not Madison's turkey. I love thin cut turkey. They have thick cut, tasteless. Adding mayo or mustard still makes it suck. So I passed on that one. I had a bottle of water. BIG MISTAKE on the water. Remember I can't get off the bed for 4 hours. Hahaha! I was asked if I have abdominal pain. I said only because I have to pee, other than that nope. So 4 hours passed by slowly, especially the last hour. That was the longest hour ever. The minute I got permission to get up, I sat up. Let my body acclomate (sp?) to sitting up. Then I got up slowly. I walked out into the hallway. I should have had a camera. The nurses desk is right there. There jaws dropped. I said I am not escaping. I have no shoes on. They said we aren't worried about that your aunt is your ride and she won't let you escape, but are you abel to get up. I said yes, I am passed 4 hours. They said okay. So relief came. I was like AHHHHHHH!
Then we waited for the results to come back around 4 or so. The doctor said there is no change from the last biopsy in March. It is still Acute Mediated Antibody Rejection. You probably are like HUH? Okay what that means is my antibodies are going after the kidney to try to kill it off. So they have to combat that with giving me high dose of steriods, my Iv treatment (that I was doing once a month now I do it once a week for one month), re-evaluate at clinic in January in GB, and see how my antibody level is. If it didn't come down, then we will be doing the Iv medication of Retuximeb(i think that is spelled right). That helps kill off some the antibodies to save the kidney. Which means we can do that outpatient also. And then maybe do Plasmapheresis also to help with that also. But that is if the number doesn't come down. Only if it comes up.

So I got my high dose of prednisone Iv form before I was discharged. Then the Tx (transplant) Coordinator who is taking the place of my coordinator since she is off on Friday's. She went over the prednisone taper at home, wrote me script for the pred, told me to get my red-tube sent in before my clinic visit. The red tube is the antibody level tube that gets mailed in. I plan on to that the week before I go to GB clinic so I don't forget to do it.

With me having the high doses of pred, I have to check blood sugar again. Which is okay. Another side effect of high dose pred is increased appetite. After I am done with the checking of my blood sugar. I plan to stay on the meal plan, or the Lifestyle plan along with Weight Watchers to help me lose weight. I only now, have soda when my blood sugar is low and I need it up. That helped me this morning. I was getting low. Well, I am home, feeling great, caught up on sleep last night. Can't wait to drive tomorrow to my Iv treatment, and feel more self suffcient. Gonig to check my blood sugar so I can eat lunch. Talk to all later! Have a wonderful Monday!

Jodes

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