Sometimes it is dangerous to tell my sweet husband what’s on my mind. I have been reading in various journals about the new “netbook” computers that are half the size and price of a traditional laptop but are powerful enough to do what you need. The other night I was wandering around Amazon.com and searched for the model I had most recently read about, the Asus Eee PC 1000H. After reading the specs I was oohh’ing and ahhh’ing and Glynn asked what I was looking at. That’s when I made my mistake. I passed the laptop to him and said, “See, that’s what I’ve been talking about.”

I thought that was the end of it until two nights later when he confessed that he had ordered one for me so I would have something lightweight to take with me to dialysis! I could hardly wait for the new baby to arrive, and we heralded its arrival with as much joy as we did that of our two granddaughters, “Look how cute it is!” “I can’t believe how small it is!” “Oh! Look what it can do!”

Yeah, we are major geeks here. But oh my goodness, what this little machine can do! It almost takes some of the dread of dialysis away, knowing that I will have this lightweight tool at hand, ready to satisfy my techno-hungers. I am trying to keep it as free as possible of proprietary software, although it does have WindowsXP on it, and am using it for all the projects my 8th grade Desktop Publishing class is doing.

Bless Dear Husband’s heart. He sure knows how to keep my mind off my fears

[Trying to write Ron's story has proven to take more time than I anticipated, and I find that I'm neglecting other things I want to write because I haven't finished this. Therefore, I have moved his story to its own page so I can work on it intermittently but keep on posting here. 3/8/09]

Another nephrologist visit, another shot, still feeling tired all the time, and the doctor is actually talking possible timelines. The conversation went something like this:

“When will I quit feeling so crappy?”

“When you start dialysis.”

“Shit.”

“I knew you’d say that.”

At least he smiled when he said it. But he went on to tell me to see him in January, to keep coming back every two weeks for my shot, and that the nurses will be asking me how I feel. I’m to be honest with them, and I’m to contact the office if I get to feeling really bad. “You may make it to January before you have to start dialysis.”

Did you hear that crash? It was the sound of my plans being dashed to the ground. They haven’t stayed there though! I’m picking up the pieces of plans, hunting for the duct tape and chicken wire, and putting them back together in a new form!

January? Not if I have MY way! According to MY timeline, I don’t have time for dialysis until Spring Break at the earliest, and more likely won’t be able to work it in until summer. So there. I’m taking my shots, I’ve got a prescription for an iron supplement that will be filled Monday, and I’m working on getting the PhosLo and Bicitra down my gullet without tossing them right back up again. By God, I’m going to keep those darned needles away as long as I can!

No, I’m not going to consider a transplant or peritoneal dialysis, but I’m going to keep slogging away and trying to be as healthy as I can. I have too many things to do to be tied down right now. This morning I had an excited phone call from my 18 year old niece. She’s moving into her very first apartment and is so giddy that I almost couldn’t understand her part of the time. It was wonderful! This evening I got to talk with two precious granddaughters, to hold them over the phone and cuddle them a little bit, hear about how boring church can be and how frustrating an after-school program is. With all this going on, how can I take time to be ill? 

My Beloved Husband is supporting me in all I do, he is my soulmate and the Love of My Life. I am so grateful that we are together in this journey. I have to keep fighting, for his sake if for no other reason. We have big plans for life together for many years!

So much for the doc’s timeline. I’m going to do my best to dash his plans and put mine in place instead. L’chaim!

It’s odd, our friends now fall into one of two categories: those who “know” and those who “don’t know.” What a bother. I hate catogorizing people, but I seem to be such a private person that I’m not willing to stand on a mountain top and announce my illness. And yet that is exactly what I’m doing with this blog. I’ll tell a world full of strangers how I’m feeling, what I’m thinking, and I have yet to tell anyone I work with other than my immediate bosses. 

I guess part of it is that I don’t want to see the change in the way people will look at me. PKD is not catching, it’s not leprosy, it’s just something I have to live with. But it will change the way my coworkers see me. And I’m in such a small community, that word will quickly spread to my students. I don’t want that. I don’t want to be anything other than the crabby/odd/occasionally funny teacher who barks at them when they misbehave and applauds them when they succeed. 

We went out with friends-who-know last night and had a wonderful time. We laughed and talked, swapped stories about kids and grandkids, discussed religion and politics, and told old jokes. It was so much fun! As I reflected on the evening though, I realized a great deal of attention had been paid to me; I was asked all sorts of questions about my past by friends we’ve known for several years. Never before have they asked about my childhood, about my college studies. Was the interest just something that popped up, or were they trying to know more about me because they fear I won’t be around to answer questions in the future? I know, I’m over-analyzing. But if you’d been there, I think you would have noticed it as well.

So where am I going with this post? I wish I knew. I think I’ll go ahead and publish this, and come back to it when the ideas in the back of my head have percolated a bit more.

Today I had my first shot of Aranesp, which is supposed to help me start feeling more energetic and less like a limp dishrag. I really hope it helps. I’m so tired of being tired all the time. I get home from work, eager to spend time with my Beloved Husband, and yet I’m too wiped out to do more than get in my chair and fall asleep. Not very good company for the man who loves me so much, I’m afraid.

Just getting this first shot has been a long journey. The doctor prescribed it for me shortly before Hurricane Ike struck. By the time the insurance company approved it and the pharmacy was ready to send it out, the hurricane had come and gone and we were listed as an “undeliverable area” by FedEx. The medication must be kept chilled, and they wouldn’t deliver it to the house until the area was deemed safe. Then there was the long confusion about getting the shot itself – it requires that my hemoglobin be tested before each shot, and the doc must sign off on it being medically necessary, before they can “stick” me. 

But we got all the wires uncrossed, I made my way to work with a small styro ice chest with two chill packs and one injection, and then got a fellow teacher to watch my kids for the last few minutes of the day so I could shoot out of the parking lot and beat the school buses onto the road. 

According to Google Maps, it’s a 35-mile/50-minute drive from work to the doctor’s satellite office in Kingwood. The staff tries to get out everything tidied up and be on their way of there by about 4:00 p.m., and my last students officially leave somewhere between 3:40 and 3:50. Hmm. And I drive a little red car that is likely to draw the attention of cops as I fly down the freeway trying to get to the office. Interesting equation, don’t you think?

The journey’s been made, weigh in, pulse/bp, check the hemoglobin, stick me, and 3 minutes later I’m ready to face the outbound traffic to head for home (43-mile/59-minute drive). I fell asleep in the chair almost immediately, and now am listening to Glynn’s gentle snores as I write this in the middle of the night.

Here’s hoping the shot does its job!

Welcome to Hope Square – the only online neighborhood created especially for members of the PKD community. Whether you’re a patient, caregiver, family member or friend, you’re invited to share your interests, stories, lives and hopes.

It looks like it’s going to be a great place to meet with others who are coping with this disease, and a way to share what we all are going through. I’ve created a blog there that simply points to this blog. I hope we’ll be able to keep the conversations going.

If you’ve found your way here from Hope Square, please leave a comment and let me know!

I’ve been lax about writing, but not because I don’t have things to say. I haven’t been able to find the words I wanted to use to describe what has been going on.

The visit to Dr. Foley on (gee, it’s been so long ago that I’m having to look up the date!) September 3 went well. He said my kidneys have not decreased in function significantly, which is a good sign. Not that they are going to get better, but perhaps I’m on a bit of a plateau and will be able to spend more time thinking and praying about what my next steps should be. He was very pleased with the status of the fistula – gave it an A+ even! I’m to return in about 6 weeks for follow-up.

About that fistula. I’m glad he’s pleased. But let me suggest a quick exercise for you… Place one of those little pencils, the kind you get at the miniature golf course, in the crook of your left elbow, and tape it there. No, not the long way, but across, as if you were trying to hold it while you did something else. That’s it. Now, keep it there. Try to drink your coffee. Try to stretch your arm up over your head like you were washing your hair. Yeah. See why I’m not *quite* as enthusiastic about it? Oh, and don’t forget that there is a constant thrumming in the pencil, and it always feels warm to the touch. You can’t add the last bit (at least I don’t think you can) which is the most fun of all. Anytime you have your arm crooked for a while, your left hand will get cold and tingle as if it were asleep. That includes when you are sitting properly at a keyboard and trying to type!

Don’t get me wrong, I’m really not complaining, just fussing. I know this can be a life-line for me, and that having it now means that I probably won’t have to have an emergency graft put in when it comes time to succumb to the double needles. But still, it is more than a little frustrating.

Frustration. That’s probably the biggest reason I haven’t been writing. One of the joys of living near the Texas coast (about 80 miles due north of Galveston) is that you get to enjoy the pleasures of Mother Nature’s temper tantrums known as hurricanes. This year we’ve been threatened a couple of times, but Hurricane Ike decided to make real on the threat.

About 30 minutes after I got home from school on the 10th, the phone rang. The Phone Tree had been activated to let everyone know that school would be closed on Thursday and Friday (the 11th and 12th). The decision was made for all schools in the county, because Ike was looming towards the Texas coast, and having the secondary evacuation routes blocked by school buses trundling along with their precious cargoes of kids was not going to help move traffic along.

At home, we began earnest preparation for the hurricane on Friday when it began to look as if it really would hit. Sure enough, after making us wait…and wait…and wait…it finally hit. Talk about a whale of a storm! We lost power about 1 a.m. Saturday (the 13th) but didn’t really feel the effects of the storm till several hours later.

Frustration. I’m so accustomed to being able to just go and do whatever needs doing! It has been driving me nuts not to be able to tote things around, not to be able to even *try* to start the generator. Simple things.Hauling the box out of the attic that had the long heavy-duty extension cords and the instruction manual for the generator was beyond my abilities because I can’t hold anything heavy with my left hand. It meant I had to take the things out of the box one-by-one and hand them down to Glynn. Moving all the stuff off the front porch, so we could set it up as a center for the generator and for cooking…I had to get the little red wagon from the back because I couldn’t carry a weed-eater and a leaf-blower and my hedge trimmers at the same time. Don’t even let me get started on full 6-gallon gas cans. Sigh.

We’ve got a ton of branches down in the yard, but I can’t drag them out of the way. Sure, just because they’re 10-12 feet long, spanning from 4-6 feet in width…still, I *should* be able to drag them off the driveway! And I can’t.

The feeling of helplessness really gets to me sometimes. Then I think of Dad, when Hurricane Alicia hit in 1983. How must he have felt, with Mom and me trying to make the house secure, and he couldn’t even tell us how he had done things in the past. I vividly remember the three of us being in the den on Tartan, with Mom nearly in tears. At the time, I didn’t fully understand what she was going through. Now I do. How was she going to take care of a man who couldn’t tell her what he was feeling, couldn’t tell her if he felt sick or scared or worried? What if he started an infection, like he had done so many times before? How was an ambulance going to get to the house? What about his next dialysis session? How would we get him there, if the clinic was even open? Mom, I’m sorry I didn’t understand it back then.

But enough. It’s 3:30 a.m. on the 18th. We still don’t have power, and aren’t likely to for several more days. School is also on hold because there is no power in Tarkington either. The generator is humming along, keeping us cool and in contact with our world. The dog is a basket case, barking for all he’s worth every time Glynn restarts the generator. We have no damage to the house, the fridge is full, and the search for gasoline has become much easier. Life is good. Thank you, God, for keeping us safe!

If you will excuse me, I need to go sit in my chair and put a pillow under my arm so it will quit tingling and warm up a bit. See you soon!

That’s the way this week has gone, good days and not-so-good days. There haven’t been any bad days, and I’m not expecting any,  just g & nsg. The good days have been every day this week. School’s back in session and I’m feeling very much alive.

I love teaching. Watching the kids come into the classroom, doing my best to knock holes in their expectations of “just another class to be survived,” hoping to see light bulbs begin to glimmer as the little grey cells start to work…all of it feeds my soul.

Which is where the not-so-good comes into play. I’m just not feeling well, not sleeping well, not up to what I want to feel like when I’m in front of my kids. That’s part of why I’m so damned scared of dialysis. I’m trying not to let my memories of what Dad went through color my own feelings, but when I read the blogs of other PKDers it sure seems that the technology has not improved. Three days a week. Three to four hours at a time. One arm tied up with needles and tubing. How am I supposed to get anything done? And how am I going to be able to face my kids the next day, worn out from the day before? Of course, that’s assuming I can find a facility that has an opening so I *can* go at night and still keep my day job.

This is frightening. I’m not ready to retire. I’m not ready to spend my life sitting in a dialysis chair, or just marking time till the next time I have to sit in the chair. But what choices do I have?

CAPD just is not an option. We live out in the country, 20+ miles from the nearest medical facility. There are too many things that can go wrong, and let’s not even talk about trying to store all the supplies that are necessary for peritoneal dialysis.

Home Dialysis? Yeah, right. Our power goes out at the blink of an eye. Sometimes it’s just for a blink, sometimes it’s for hours on end. “Okay,” you say, “get a generator.” We have one. I can just see the power going out at 11 at night, and poor Glynn going out to fire up the generator so I can finish the dialysis session. Oh, and then there’s the water filtration system we would have to have installed. And the supplies that would have to be stored. Can’t you just see an 18-wheeler pulling up in front of our house on a monthly basis?

What about a transplant? No. Short, sweet, emphatic. No. There are too few kidneys and too many people that need them (about 75,000 currently on the kidney waiting list). There is the enormous expense. There is the ongoing battle with rejection. There are the side-effects of the anti-rejection drugs. And while I’m waiting? We’re back at square one with hemodialysis. Let’s say I *did* decide to go the transplant route. The median waitlist time at St. Luke’s is 28 months. That’s more than two years! For what? What will I be doing during that long wait? And if I reject it? Like I said, No.

All of which leaves me sitting here on Monday afternoon, waiting to see if Hurricane Gustav is going to have any affect on us (most likely not, other than some rain), watching the clock move towards Wednesday when we go to see the nephrologist again. To find out what? That the tests in July were abberations, and that my kidney function has not declined as much as he thought? That the lastest round of tests show no change, and that I’m just going to have to wait until the next blood tests, and the tests after that, and the tests after that, before we’ll know something? This tension is really getting to me.

So there it is. Good days and not-so-good days. But what a joy it is to be able to have days at all! Thank you, Lord!

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.