The Lemonade Stand

I’ve always been extremely right-handed, and often joked that my left hand is just along to carry stuff for me. Well, now that I have the fistula in my left arm I’m discovering that my left hand did a lot more than I gave it credit for!

Right now I’m not supposed to carry anything heavy or put any strain on the arm. That means a multitude of things…

• trying to retrain myself to carry my over-laden book bag on my right shoulder
• stopping and thinking before I try to get that heavy pot out from under the cabinet
• waiting for my Dear Husband to help me get stuff out of the back of the car at the end of the day
• not being able to squirm computers around in my classroom to get it setup for the start of the new school year
• and the list goes on and on…

The business about not getting my classroom setup is really bothering me. I’m so accustomed to toting things around, arranging and rearranging and going back to the first plan (or was it the third?) and now I just sit in my room and stare at the blank walls. I’m too timid to get up on the desks and put posters up like I usually do, scared that I might lose my balance and mistakenly break my fall with my left arm. I do NOT want to go through the surgery again anytime soon, and that is the one thing that is making me “behave.”

Of course, having a twisted ankle isn’t helping either. Not sure how I managed it, but somehow I bunged up my right ankle, so now I’m bi-laterally challenged! I would laugh about it, but I can’t even give up my pride and use my cane from years ago because I can’t bear the pressure on my left hand/arm. The other day I was all over my campus, limping from room to room and feeling more and more sore. I had to go into my room, close the doors and turn out the light as I dealt with a huge wave of self-pity…I couldn’t even ask to borrow the school’s wheelchair because maneuvering it up and down the halls would put too much strain on the arm.

All of which has served to bring up memories of my dad, paralyzed on one side from what they called a “minor (!) stroke” when he was on one of his many stays in the hospital for an infection in his CAPD shunt. Watching him try to make his way from the bedroom to our den by himself, pulling with one foot and pushing with one arm, the other foot resting useless on the wheelchair foot rest and his badly-swollen arm laying helpless in his lap. They had put a shunt in his paralyzed arm after it became obvious that Mom and I were not going to be able to cope with giving peritoneal dialysis to a man who could not stand up to be weighed, who could not tell us how he was feeling (because of the aphasia that was part of his stroke) and who wept like a child when we struggled to take his blood pressure. (This was back in the early 1980s, before the easy BP kits were out.)

So I felt sorry for myself for a bit, then went back to work helping other teachers cope with their technology problems. That did not help me get my own room in order, but it sure helped me feel that I was accomplishing something!

I still have one Steri-strip covering the incision on my arm, although the others have given way just like the surgeon said they would. The itching is driving me bonkers, but I know it’s a good sign that healing is going on. (Yes, I’m checking to make sure there is no inflammation, no streaking, etc. that might be evidence of an infection at the site.)

The other big thing I’m dealing with is nausea. Oh, and sleeplessness. Which is why I’m writing this post at 3 o’clock in the morning. If I take my meds, I know they’re just going to come right back up again, like they did last night. If I don’t take my meds, the Restless Leg Syndrome keeps me from falling asleep. Talk about a no-win situation! I’m going to talk to the doctor when I go on Sept. 3 and see if he can give me something to help me sleep, and maybe even something for the RLS. Interesting observation…I didn’t have “the jerks” for exactly one week after the surgery! There must have been some residual medication in my system that gave me peace, but just like your washing machine knows the exact day that its warranty has run out, one week to the day after the surgery my legs started giving me fits again.

But all is well, and all will be well, and we will weather this. Now, if I could just figure out how to pry the remote out of my sleeping Beloved’s hand so I could change the blasted channel, I’d have it made. What? You say there’s a way to change the channel withOUT the remote? No way! At least, I’ve never seen my techno-hubby do that.

Monday was not only my first day back at work (in-service) but also the day for my follow-up appointment with the surgeon. Which meant, of course, that we had a stormy day for my 70-mile drive into downtown Houston. Sigh. (Want rain? Just call me!)

The surgeon is pleased with the sounds in the fistula and wants me to start exercising my arm in another week or so. She says that it will help strengthen the fistula and help it mature more rapidly. So now I have a slight bulge in my upper left arm, and a nicely healing incision in the bend of my elbow.

I’ve noticed that I have to be careful not to keep my left arm bent too long or I start to feel tingling/numbness in my left pinkie and ring fingers. The surgeon says this is normal, and to just make certain I stay aware of it.

I definitely need to get a bracelet to warn people not to use my left arm for taking blood pressure or drawing blood. My biggest nightmare right now is that I will have something happen at school and the school nurse will slap a cuff on me and undo all I’ve been through in the past week. I’m not anxious to spread the word at school about what’s going on, but I have told the principal and I guess I need to tell the nurse as well. Oh, how my British “privacy please” is being tried! Now, if someone could just tell me why it’s okay for me to write about it here, but not want people I work with to know…

Next visit to the surgeon is in 6 weeks. Next visit to the kidney doc is in 14 days. Long two weeks coming up.

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.