Austin is not in renal failure. No, that’s not some miraculous reversal of the past few days’ news; I just wanted to make sure you all understood that it hasn’t happened yet. All of this action we’re taking is designed to prolong the life of that remaining half-kidney as long as possible. The slow decline has indeed begun but we want it to be a good long while before the final withering away.
Remember that he won’t be eligible for a kidney transplant until he is cancer-free for two years. And we haven’t declared him cancer-free yet so those two years haven’t even begun. The immuno-suppressant drugs transplant recipients have to take can cause malignancies to grow so there is absolutely no way around that hard-and-fast rule.
So, we’ve increased his blood pressure medicine. And he’s hooked to IV fluids for eight hours overnight, with a little pump lying next to him in bed. It took a home care nurse to wisely suggest to my stressed out mind that I turn it on right before I go to bed (instead of when Austin goes to bed), thereby eliminating a 4 am finish. Brilliant. And we’re going to stick to this diet to the best of our ability, knowing that some slip-ups now and then will not be the end of the world. It’s not like the constant on-your-toes watchfulness of parents whose children have fatal allergies and can’t withstand even a crumb (or sometimes a whiff) of peanut or milk or what-have-you. If he has some cheese, well, then he’s a happier boy. Plus I learned from one of the kidney docs yesterday that he can take a chewable Tums before each meal which will bind the phosphorous (the dreaded ingredient in both dairy and soy) so it doesn’t seep into his bloodstream and then he’ll just poop it out. Perfect.
So, I’m feeling a little better. One thing I noticed after yesterday’s post is the arc that my writing often takes. I start off down, complaining about the latest medical misery to befall us, but as I near the end I am cognizant of not closing on too gloomy a note. I don’t want to leave you all feeling helpless and hopeless and so I force myself to find the shred of good and to focus on it and to give you some hope. And in doing that, I give myself some hope.
It’s another variation of this post, but it’s more internal. I write that we’ll be okay and then I believe that we’ll be okay. My fingers type the words of all we have to hope for and suddenly I’m reminded of all we have to hope for. So you see, you are more a part of this than you know. I am writing for myself, no doubt, but I am writing for you too and that shapes the arc of what I say or how I say it. You may feel that you’re not doing anything out there, just reading all alone at your computer each night and feeling sorry for us, but you are. It’s more powerful when we hope together.