The Lemonade Stand

We started making lemonade this summer, when my nephrologist gave me the news that I have moved to Stage 5, with only 13% kidney function. Quite a shock, even though I’ve known about the polycystic kidneys for several years now. Somehow I didn’t think the disease was going to progress this quickly. Heck, many people have it and never even know! Why do I get to be one of the lucky ones that has to deal with it in a deeply personal way? Ah well, such is life.

After giving me all the lab report info we talked about options. I’m adamantly against CAPD after watching what happened with Dad, and I’m not a good candidate for transplant since my only sibling also has PKD. (Thank God he hasn’t progressed as far.) That leaves some form of hemodialysis to deal with. The doc wanted me to get an AV fistula created so it would be maturing. Hopefully we won’t need to use it for a while…for a LONG while.

Well, the fistula story was not as smooth as I would have hoped. Each visit involves driving into the Houston Medical Center, a 70 mile trip each way, and that alone is enough to set the tension level to high. First trip was for the ultrasound of the blood vessels in my arms. Two days later drive back to Houston to meet with the doctor and find out which vessels could be used for the AV fistual. The surgeon is great, and made room so I could get the surgery done before school starts. (People think it’s so great to be a teacher..you get summers off and only work from 8-3. Little do they know!) A week before the surgery, it was scheduled for 9 a.m. at a hospital with a day-surgery clinic. When the surgeon’s office emailed the confirmation and directions, the time had been changed to noon. No big deal, other than “fasting after midnight” meant I would definitely miss having my morning coffee.

Naturally the tension built for both of us over the weekend. Bless his heart, Dear Husband is a tower of strength for me. He knows the ghosts I am battling over all of this, and he keeps encouraging me and supporting me as I melt into tears. I wish I had some way to support HIM. I know he’s feeling very frustrated and lost right now, but I don’t know how to reach out to him without getting all sappy. Grr.

Anyway, the day before the surgery, the surgeon’s office called to tell me there had been a change. Now I was to go to St. Joseph’s clinic, report there by 10 a.m., and “could you go there today for the pre-op paperwork?” Great! Now I had a trip to Houston, in the rain, knowing I’d have to make the same trip the next day.

The St. Joseph’s people were wonderful, getting me through all the paperwork and tests without any problem. Of course, by the time I got to Houston and got all of that done, it meant I had the joy of driving home in rushhour traffic. At least the rain had stopped.

Wednesday, the 13th, was The Day. Neither of us got much sleep the night before, and we left the house about 8:15 to allow for traffic and getting turned around, but our “gremlin” (aka our new Garmin Nuvi) got us where we needed to be. I pointed out the Starbucks to Glynn as we moved through the lobby, so he would know where to get something decent to eat and drink while I was in surgery, and we moved on to the 3rd floor.

Things moved quickly. At first. Then they came to a halt. The nurses had me ready to go by 10:30, although the surgeon wasn’t due till 11:30, so we had a lot of time to just sit and wait. Or rather, for Glynn to sit and wait while I lay shivering on the bed. We tried to watch TV but it was hard to concentrate. Around 12:30 a nurse came by to say the surgeon had been unavoidably delayed and would be there around 2. That was not good. My nerves were already frazzled, and that just made them more so. DH held my hand and tried to comfort me, but I can sure be stubborn sometimes! Poor Man.

Around 2:30 they told me it would be 5 before she could get there. That really was the crowning glory. I had not had anything to eat or drink since midnight, the tension was so thick you could have cut it with a scalpel, and it was so close to my skin that you would have needed a scalpel to get through to me. I was in such a deep spiral it didn’t occur to me to ask the nurses for something to help me calm down. It was when the anesthesiologist’s nurse showed up and it was obvious I had been crying that she suggested she get orders for something to relax me. A Valium later I was feeling better, and the surgeon arrived.

Although the plan had been for me to have a regional anesthetic, what with the tension and all my restless leg syndrome had kicked into overdrive, affecting my entire body and they had to give me a general. Not a good idea to try to do surgery on an arm that is flailing about!

My Poor Glynn. What he went through that day is NOT something that was in our wedding vows. Bless him, his was the last face I saw as I faded out of wakefulness, and the second one I saw when I woke up. (The nurse was the first, but I know DH was there at my side the instant they would let him come in.)

We finally got back to the house about 9. Poor Puppy had set a new record for being in his crate, and he was almost as happy to see us as he was to get outside and then get his dinner!

So now we start a new phase. My left arm is sore, but manageable. Teacher in-service starts Monday, and I will see the nephrologist again on Sept. 3. It’s going to be a long couple of weeks.

This entry was posted on Sunday, August 17th, 2008 at 3:03 pm and is filed under medical, personal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.