Liveblogging the Intake Appointment

8:01am

Just like a work day. Same train, same people on the train. Only difference is I’m wearing jeans.
I’m not expecting anything momentous, though it is a symbolic milestone. Chest xray, stress test, probably bloodwork, and a lot of information sessions. I skipped the coffee this morning, which may have been a mistake.

9:01am

The registration clerk mumbled so badly I literally couldn’t hear her. I gave up after a few tries and just answered yes to every question.

After vital signs, the tech read me a questionnaire which asked, among other things, whether I had any religious or cultural beliefs that would impact my decisions regarding medical care. Hmm.

9:17

Are you fricking kidding me? I’m told that I can’t get worked up until function is down to 20%. They’re sending me home.

9:24

Reprieve. The transplant coordinator has deemed that we can go ahead with intake.
I apparently will get put on The List even though I have potential living donors. Under UNOS regs, all recipients get listed at time of intake, which is where the 20% requirement comes from. Kind of circular reasoning. Plus, there is some question regarding whether insurance will reimburse if I’m not at 20%.

The doctor doing the intake with me was/is my father’s kidney transplant doc, so I’m hoping that means good karma.

9:51

Super-quick medical exam. Heart, lungs, all seem to be working fine. I even had to open wide and say "ah." Apparently my right kidney is larger than my left. As the liver lives on the right as well, that would explain why my discomfort on the right is always more prevalent. Doctor says that he's seen much more enlarged kidneys -- on a scale of 1 to 10, he calls mine a 3. I told him they feel pretty damn large to me.

11:16 am

After the Q&A with the doctor, I am sent across the street to the transplant clinic with a big sheaf of papers that I scan on my way. Labs ordered include blood type, HIV and hepatitis screening, and other tests whose initials I don’t recognize. At the lab, the phlebotomist counts out 13 vials and I ask her to add one for good luck (she laughs and refuses). It looks like the chest xray and stress test are going to wait until we’re closer to actual transplantation.
Now I’m waiting for the “class” – a lecture session with the transplant nurse coordinator. I have a big packet of information to go through, as well.

11:29

Quick financial counseling session while waiting. My insurance will cover the costs of surgery for both me and my donor, but it had not occurred to me to check the lifetime maximum benefits. Luckily, the staff here are on the ball and with my $5M cap, I should be fine. The retail costs of post-surgery meds can run $4k per month, so the money can run up quickly.

11:30

One issue I hadn’t expected is that my brothers will both have to be retested for PKD before being cleared as donors. They were both tested back in the late 1980s, when I was diagnosed, but medically speaking, it’s still possible that one or both of them could now have signs of PKD. Sobering.

11:39

Passing the time trying and failing to get internet access. Across the street there’s a strong wireless network for guests; here, it looks like it’s available but I can’t get logged on. Dammit.

11:50

Jason, Dad & Pei show up just in time for the presentation about donation, listing, and UNOS regulations. I remembered last night that there is a complication for some women having to do with sensitivity developing as a result of multiple pregnancies, and the presentation bears me out. The blood work we did today should give an idea of whether this will be a problem for me.

1:45

I have met with a social worker and dietician and learned that I’m going to need some back-up support to help drive me to biweekly follow up visits post-surgery. Hmmm. Also, I should be eating a little more protein (and calories in general) than I have been. My appetite has been so reduced, I’ve been getting by on very little.

Jason spoke with the coordinator while I was being counselled, and he had the idea to get his final PKD clearance testing done in Singapore, so that the results won't follow him to the States. Smart.