Donor Info and Shit Show Installment Two

It’s been a busy two weeks. Before I go into that: Today, Monday, I had a series of appointments at Abbott to prep me for transplant (hopefully in January). I now have an important number. Susana Gust is the donor coordinator for my transplant team. If you are interested in being tested for donation, she can be reached at 612-863-8886. You are never under any obligation – you can back out at any time. I have no access to any information about this. They keep me in the dark: I don’t and will never know who calls or gets tested unless of course you end up being the donor. I hope to write more about this later, but I’ll say here that even considering that any of you would think about being tested is overwhelming to me. It’s big big big. I tear up just thinking about it. Phew!

So here’s the latest installment of the spring 2015 shit show.

I had a cold type thing the week of May 25^th, so I was out of school on the last week, which was a bummer. That Thursday I went to an appointment to get my arm checked out for the dialysis access with vascular surgeons. The doc guy found clots in whatever veins they would use to make a fistula, so they would put in a gore-tex graft connecting an artery and a vein to be used for dialysis. And they could fit me in for the surgery that day. So I left to pick up Corinne for a ride home after the procedure and had the graft placed that morning. I kept an appointment that afternoon to get checked for pneumonia, though the surgery drugs continued to do their thing and I have little memory of any of that. I tried to work on Friday but only made it through two periods. And my arm hurt like hell.

I finished the year with finals on Monday and a retirement send off for Dick Engler on Tuesday, but my arm was awfully sore and I was increasingly feeling shitty. My labs on Wednesday showed that my creatinine had risen to 5.4 (a full point from one week before) and my doc wanted me to start dialysis immediately, which meant having a second access put in – a temporary shoulder catheter I also had when I was first diagnosed in 2001. I’ll post pictures of some of these later. I was pretty embarrassed about the catheter port the first time around and I’m ready to move past that – and bring you with me J.

I balked at the idea of having this surgery, as I balked at having the fistula back in January when it first came up. I had hoped to limp to the finish line of transplant eligibility in January 2016 without dialysis. Now I hoped to limp through the healing time for the fistula graft – 3-4 weeks – without needing the secondary catheter. There is risk associated with the shoulder catheter / access – it can cause vein stenosis (narrowing) which can lead to arm swelling. I already have a bit of that from the last time around. Additionally, if the shoulder access is in place for a while, it can become attached and difficult to pull out (this is one of a few traumatic memories from my early diagnosis – the guy pulled so hard on the catheter I thought my face was being pulled off). Anyway – I hoped to avoid it to no avail. I had waited too long to have the fistula placed that I felt sick enough for dialysis before it was ready, and tomorrow (Tuesday), I’m having it placed. I should only need it for a week or so, so it shouldn’t cause any trouble.

On the plus side, being sick now will help me appreciate the good the dialysis is doing – I’ve felt a motion-sick style nausea off and on since Thursday of last week. At this point, I’m ready for the treatment. I’ll be staying at Abbott for a day or two to make sure everything goes smoothly, then back home. Thanks for reading!