written on October 6, 2014
Had a phone call from my wife’s surgeon about an hour ago (around 3 pm). I’m still processing it – he’s postponing the surgery. So no new kidney tomorrow.
When they did a CT scan of my wife’s kidneys in June, they managed to overlook the fact that she has a small calcification in her right kidney (the one she’s keeping). Her surgeon was reviewing the results of the CT scan today and he found it. Now he wants to run a 24-hour urine test to see if she is prone to kidney stones. If she is at a higher risk for forming stones in general, they’re not going to allow her to be a donor at all. I’m hoping she can start the urine test tomorrow and maybe we’ll still be able to do the surgery in the next week or two.
Another update after a call from my wife – even if she does the test tomorrow and they rush the results and everything is fine, the earliest they could do the surgery would be October 28. Not really how I wanted to celebrate number 41, but it’s worth it for Tim 3.0 (see the blog entry “DREAMS”).
My wife is very upset by this turn of events. For good reason. I’m more disappointed than anything, and I’m very upset with Cedars over the fact that it took them until the night before the surgery to red-flag a potential problem. Why didn’t they find this back in June during her final donor evaluation? Was everyone at Cedars asleep that week?
I understand not wanting to risk my wife’s future health. If she is prone to kidney stones then only having one kidney that gets stones is bad – kidney stones can damage the kidney tissue if they get too big. And I’m sure they could cause other health issues that I’m not even aware of.
This poses all sorts of other issues though. My catheter for one – it’s only rated for 6 months of use. I’m fast approaching the end of that window. Which means I’ll have to get another one. Not my idea of fun. It’s an outpatient procedure but you still have to be put under. And to have another catheter installed means it would have to go on the other side. That means another 3 weeks to heal – although they can do hemodialysis on a non-healed CVC (central venous catheter). And I’ll have to go through the drug therapy again because I’m pretty certain my antibodies will start coming back to normal if we have to wait another 3 weeks.
Then there’s the issue of what if she’s no longer eligible? It will take Cedars another 4-6 months to approve another donor and then another month or two beyond that before they’ll be able to schedule the transplant. So if she’s not approved, I would probably switch to a PD (peritoneal dialysis) catheter and do dialysis at home (but I’ve been reading recently that one of the main manufacturers of the dialysate solution for home dialysis is running behind on their manufacturing so some PD patients are having to wait for their monthly dialysate to show up. This is a big problem – no dialysate, no dialysis).
There’s also the issue of if she is approved and we can do the surgery on October 28, she’d have to turn down the new job that she was just offered today. She’s been worried the last few weeks about when she’d be able to go back to work and then this job showed up, which would have her start either November 3 or November 10 and it’s an 18-week-long union gig. If the surgery is at the end of October, that wouldn’t give her enough time to recover before starting the job. So unless her new employer would be willing to find someone to fill in for her for the first 2 or 3 weeks, she’d probably have to say no and go look for something else that would hopefully start before the holidays (always a slim chance).
And if I have to wait another 6-9 months before I could find another living donor, I’d most likely have to go back to work myself. If the migraines and blood pressure are kept under control, going back to work would be better for me. We’d have a second income (assuming my wife is working) and it would get me out more (I’m not saying I want to rush back to work, but staying on disability if I don’t have to isn’t the best option). The 12-hour days might still be too intense, but I’d make it work if I had to. It would mean 5 am dialysis again, but that’s a small price to pay if I’m feeling “healthy” after dialysis (unlike the last four months, where I felt anything but).
But really one of the biggest issues is the financial impact. We spent a lot of money to rent an apartment for two months, my wife’s family took time off of work to be here this week and next, my family paid for their plane tickets to fly out here (and they got on their respective flights before I could tell them that the surgery is postponed, possibly cancelled). And if my wife has to give up that job, we’re out a bit of income as well. All told, we’re looking at thousands of dollars that has been committed to the surgery date of October 7, but Cedars doesn’t care about any of that (when I said the system was broken in my “INSURANCE” blog, I didn’t realize that it would bite us in the butt in such a monumental way).
Don’t get me wrong – I want to know that my wife is a safe donor, that she’ll continue to be healthy and free from complications after the surgery. If this potential risk of being a stone former prevents her from being a safe donor, we’ll live with that and move on. My biggest peeve here is the fact that Cedars waited until 3 pm the DAY BEFORE the surgery to tell us that they’re postponing.
We both appreciate all the good wishes and positive vibes and prayers that so many people have been offering us for the surgery tomorrow. I’m sorry that we don’t have better news to tell you, like it’s over, it’s a success and we’re moving on. Hopefully we’ll still be able to give you that information later this month.
And if not, well I hope you’ll stick around for many more months of my weekly ramblings…