Wednesday, March 23, 2016

Kidney News 2K16

When I started this blog in 2010, it was focused on having a baby. For the past six years I've written about the ups and downs of infertility and even a surprise pregnancy. But peppered within those family-centered writings have been notes of importance about my health. My children are the most important thing in the world to me. I adore them, and if I'd known it would happen in advance, I'd still have done it. But that does leave me having to face the fact that my kidneys went to hell in a hand basket. They would have anyway - it's the nature of the disease, and we tried everything we could to stop it. I've spent 6 years wondering "when". When would my kidney function drop so far I needed help? Would I have time to wait for a transplant or would I need dialysis? Finally, some of these questions have answers.

I've always said I just wanted to get my kidney transplant over with, and, while that remains true, there's a whole new set of circumstances to think about when it actually comes down to that time. And it finally has. My latest set of test results show my GFR at 17. Creatinine at 3.2. Which I thought would suck, but I was also ready to just move on. A few weeks ago my nephrologist started me on a medication for blood pressure that he said my make my creatinine jump a little. I was ok with that. Maybe I'd hit 20 GFR and get the ball rolling. But the results were much worse than I though, and, though he didn't say it, worse than my doctor expected. As it stands, I'm waiting for a re-test right now, that I'm pretty sure is to make sure I'm not in acute renal failure.

It's really stressful knowing basically nothing about what's going to happen, but at least I know I have an appointment on 4/11 to discuss it and get the ball rolling. My brother should be able to begin testing quickly. They are already verifying everything with my insurance for my part. I don't know how long it will take from start to finish, and until I get these test results, I don't know if I have a prayer of making it without dialysis.

I honestly don't know how we'll keep paying for things if I have to stop working for more than  8-10 weeks. And so many people on dialysis can't function well enough to work. That's why you get social security disability for ESRD. But that's not enough to pay our bills, and I certainly can't lighten the load by watching kids. I'll be physically unable. So I just pray I can keep working until transplant, take 10 weeks off, then work from home for a bit and then come back.

I'm looking at all the things I'll have to go through, hoping I'll pass the tests. And then the things they do during surgery. Ports in your neck, catheters in your pee hole, another huge, open surgery scar. I can't pick up my kids, and they can't lay on me for a few weeks. I'll have to be away from them for 7-10 days in the hospital. People bothering me all day and all night. I was supposed to stay with my parents for a bit when I came home because Andy will be working so much, and they could pick the kids up from school and make sure they don't jump on me, but I'd still get to be with them, but now their house won't be done. I hope they realize I will literally be of 0 help except to hand out cuddles for at least two weeks.

The good news is, if we get it done soon, it'll be over, and this whole mess will be in the past, at least for a while. Maybe by the next time I need a new kidney they'll be artificial. I'm hoping not to need as many hospital stays as my friend did after hers for various infections. I expect some hiccups, but I pray that for the most part it will be healthy momma and her babies doing all the things I 've been wanting to do. And Andy. Haha. All I can do for now is pray.

1 comment:

  1. Thinking of you and sending lots of positive thoughts!