written on October 13, 2014
Where do we go from here?
I’m mostly talking about the prospect of the surgery not happening. Either because my wife is no longer an eligible candidate, or because my blood pressure is too high, or because one or both of us get sick.
All of these things have been on my mind since last Tuesday. Well, really Monday afternoon as soon as I got the phone call from my wife's surgeon (he called me because he couldn't get in touch with her). My immediate thought was what kind of dialysis am I going to switch to, because the catheter in my chest is close to being done. It’s only rated for 6 months of use and we’re in month 5. So if the surgery can’t or doesn’t happen in the next three or four weeks, what will that mean? I don’t want another catheter – it’s too much of a pain to live with this thing. My only other options are peritoneal (PD - which means a new catheter in my abdomen) or having a fistula put in my arm to continue the hemodialysis. Either way it's another surgery, and another 3 to 4 weeks to heal. Tomorrow I’m meeting with my nephrologist – this is definitely a topic of conversation I want to have with him, which dialysis should I pursue if I have to make a decision.
If my blood pressure takes a few weeks to get under control, what will that mean? And why is it so high again? I was told the main side effect of the IVIG treatment is high blood pressure – could this still be a side effect of that? If so, how long is it going to last? Will it come down again on its own? How long will the IVIG side effects last? I know the treatment is supposed to be good for up to four weeks, but I don’t want to wait four more weeks until the surgery. Especially when I was ready to go last week – my blood pressure was 150/90 last Monday, but I would have gotten that down in time for the surgery with a couple more pills. 170/100 is a bit harder to get down with just medication.
And what if this cough I’m suffering is something more than a cough? If it’s a lung infection of some sort, that’s the end of that. I’ll have to beat it before they’ll reschedule and since my immune system is compromised right now, how long will it take to get an infection under control? A lung infection could potentially turn into pneumonia after the surgery and that’s a risk no one wants to take, me included.
Then there’s the last remaining factor – my wife. What if, by some strange circumstance, they determine that she is prone to kidney stones (even though she’s never had one in her entire life) and decide that she can no longer be a candidate for living donation? Then what? I’d have to look for another donor. And that’s a huge process, involving lots of time and patience on the part of someone else. Plus, if it’s someone from out of town, they’d have to travel out here at least twice – once for the final round of testing and again for the surgery itself (and the recovery time). There is a lot of blood work involved and a lot of factors that determine whether or not someone can be a donor, so it really is a minor miracle that my wife was accepted. I know I’ve had my concerns about her being my donor, but really, it turns out she’s my best option right now (and has been from the start).
And if she gets denied by Cedars, I’ll be switching to a different transplant center also. After the frustration and anger and all the other emotions I felt last week by the postponement of the surgery, I can say with certainty I won’t stay there. One of the immediate benefits from Cedars is that they do blood-incompatible donations, and they’re the only center in California that does that. But switching centers means I have to go through all the testing again to make sure another center would accept me as a potential recipient. A lot more work on my part and there’s always the chance I wouldn’t be accepted somewhere else.
Hopefully none of this comes to pass. I’m still hoping we get the call from Cedars soon saying the surgery has been rescheduled and we’re ready to go. And then it happens.
As I’ve said before, and I know I’ll say it again, we’re just taking it one day at a time. Because really, that’s all we can do right now. I just hope one of these days includes some surgery time.