My husband and I were the first patients at our clinic to be trained to use the PureFlow system instead of bags. They chose us because we learn quickly and are fairly flexible. The nurses at our clinic had to learn along with us so they will be able to train any new candidates. So our training has not been typical.

It has been one long comedy of errors. And we essentially gave up most of a week of vacation in order to go through this process.

Last week the NxStage rep worked with the nurses at the clinic, getting them used to the system. They called us to see if we could come in Monday afternoon to meet with the rep, so we quickly rearranged our schedule Monday to accommodate that additional time. We took our cycler in then, too, so it would be ready for us the next morning.

But upon arriving Tuesday, they told us that we would just be using our normal bags because the lab check for the water was not back yet, so they had not made a batch of dialysate, yet. So, Carl is doing a regular treatment while the rep is showing me things about the new system. He can't see them very well, because, of course, he is stuck in the chair.

The NxStage rep asks if we can stay after our treatment on Wednesday so she can reveiw some things with us and the nurses. No problem.

Except, when we arrive on Wednesday, we discover that the lab test on the center's water got lost, so we will not be dialyzing with PureFlow that day either! To top it off, the center does not have any dialysate to match Carl's prescription. They say it will be okay to use a different prescription for one treatment.... Huh?

So we go through another regular treatment and finish about 12:15, ready as requested to stay later so the NxStage rep can work with us in tandem with the nurses. Only the nurses have disappeared for their lunch break. After waiting a while (seemed like forever by then), the rep decided to simply go over things with us. And says that she can do the same thing with the nurses when they come to our house on Thursday.... No problem.

The tech at the clinic tells us that UPS will be delivering the chassis and supplies Thursday at our regular delivery time and wants to know when that is. We are never home for UPS deliveries, so we have no idea. She calls UPS to see if they can arrange to have our supplies delivered in the morning so we can do our training in the afternoon, and gets the very clear and definite message that the supplies will be delivered no later than 7:00 PM!

The NxStage rep assures us that she doesn't need to leave until Friday morning so it is okay if the unit doesn't arrive until late. It might be all right with her but, hey, I want a life!

So, this morning I hang around the house (okay, I was cleaning like a mad woman), waiting for the delivery while Carl was doing maintenance work at school. He comes home for lunch and we get a call from the clinic asking if the supplies had arrived. Nope. Honestly, did they think I wouldn't call them? So UPS pulls up around 1:15. We open the big box with the really cool cabinet that everything is going to fit into and oops.

UPS has managed to drop the whole unit on one of the top corners and broken it. The top is made of Corian! And it is broken! Calls back and forth to the clinic ensue. They are on lunch break when we called the first time, so we left a message. They must take a lunch break every day. Who would have thought?? Finally they say that they will be out around 2:30 PM.

When they arrive they say that they will have to get a batch started and draw a sample to get it back to the clinic no later than 4:00 PM. Okay. Chit chat. The NxStage rep is getting the nurses involved so they would be prepared to teach the next round of folks learning this system. She said that she had to check them off on their skills. I got a bit tickled over their having to be assessed for proficiency. Kind of reminded me of when they were training me the first time around.

I notice that time is passing and it is getting close to the time that someone will have to leave in order to make it back to the clinic in time. I mention that perhaps the sample should be drawn. Who's running this training? So this process actually takes pretty long because they have to prep the port with Betadine and let it sit for 3 minutes. The clock is ticking....

Training isn't finished, but one of the nurses has to leave to take the sample back to the clinic to get it on the FedEx truck to go to the lab. The one who really should stay to finish the training is the one who drove her car, so she is the one who bails out. Go figure.

We start draining the SAK since it can't be used and finish off the training. Carl and I will have to run a new batch and take another sample from the end of the 72 hours that the batch is viable. We will have to take that sample in to the clinic early next week.

A new chassis will be delivered on Monday (I sure hope they don't drop it!). So we will need to empty the contents from this one and reconnect them to the new one. That will be good practice. Can't say we really need it at this point.

I'll have to draw a dialysate sample from the mix before our monthly visits to the clinic and keep it on ice until we get there. So I'll have to add that to doing the Kt/v each month. A month of supplies and two PAKs werre delivered today along with the chassis for the system. I can hardly believe how LITTLE there is. Whew, a whole new area for collecting junk will be available in my garage!

Whew! What a day we had getting the machine set up! At one point Carl decided to connect the lines to the dialysate bags differently, but forgot that he had broken the frangibles already! No too big of a problem, but he forgot to clamp the line he took off. A few moments later it started spewing dialysate all over the place.

That interrupted our process for a few minutes as we mopped up the mess. Then when it was my turn to connect the warmer outlet to the line, I discovered that Carl had not clamped it! That was where he got interrupted by the previous spew. Another spew ensued. At least the dialysate coming out of the warmer was, well, warm!

I'm guessing the machine will not run the whole 3 hours today as the bags will run out before his time is over!

We try to be so careful! It seems that every time we change a routine, we have this kind of mishap! The lesson is: be extr careful for ANY change!

It hit me one day last week that I had stopped railing against the idea of doing dialysis treatments every day. It is just a simple (well, not so simple) part of life. We don't put all the stuff out of sight. The machine, the supplies, the set-up table are all just part of the decor anymore.

We don't get many alarms, but when we do, I don't freak out. I just curse and get the book to see what needs to be done. Like Thursday, when I was setting up by myself because Carl wasn't home, the machine kept alarming before I even had the fluid lines connected to the cartridge. I finally just switched out the cartridge because there wasn't any other solution.

I still haven't infiltrated Carl. And even though some of the sticks are REALLY difficult, I don't feel like I'm going to panic. I know that I'll be able to get the needles in.

So, it has come to being a routine. Do I love it? NO! But it certainly keeps Carl alive and well. That is what really counts.

The stress is catching up with me. Living at the very edge of my coping capacity only works when absolutely nothing out of the ordinary happens. Even then, I'm always marginal.

Adding a huge speaking engagement wasn't the breaking point. The crack started when Carl had to leave the room during my program to take a call. It could only mean trouble at school. THEC had arrived at school to review all the MEI files. In 19 years it was the first time they had visited.

And of course, without my presence they couldn't find everything they wanted. They pulled Allison out of the classroom leaving Erin by herself. They pulled Britton out of the classroom leaving Rebecca alone. And called and called with all the things they wanted to have in their office by Monday. I explained that many of the files are now electronic. They said that I needed to print them out and FedEx them. by Monday. Didn't I get their letter telling me that they would be visiting? I vaguely recalled seeing something... I really felt distracted from my presentation. Awful.

Amazing how all those folks thanked me and thanked me for what I had given them, yet I felt pulled apart from the whole thing once that call came in to Carl.

While driving home I called THEC to ask if I could e-mail the files instead of FedExing. Good God. The cost of same day delivery. And they acquiesced. But it is no easy task.

So, after finishing Carl's dialysis treatment after that long drive home (snowing on and off the whole way) I thought I should check my e-mail to see how I could possibly have made such a blunder in missing the announcement of the visit from THEC.

Yes. It was all very clear then. An e-mail arrived in my in-box Wednesday night at 10:55 PM, long after I had gone to bed to prepare for the long day of driving Thursday. I had scanned through my e-mails before leaving Thursday morning and this is what it said:

Please see the attached letter regarding your upcoming site visit and audit.

I did not have time to open the attached letter, but I did that Friday night before going to bed! And it said that the letter served as 48 hour or 2 business day notice of the THEC visit. Hmmmm. Even if I HAD opened it the moment it arrived Wednesday night it would not have given me 48 hours or 2 business days of notice.

So, I have spent all of today (except the time going to get this week's groceries) working on getting the files transferred from Mary's monthly reports into the students' files. And I have 6 of the 30 requested files done!

Tears on and off (the silent kind) during dialysis tonight. I really feel like I'm drowning. I can't keep up. I need to give up a job to survive, but which one? MEI? Without the work I do, it would fold. There is no one to take it over. MMS? That is a possibility, but not until it is up and running. School? Not going to happen. No matter how much I would like to retire, realistically, we cannot afford to.

But I am going to crash and burn if something doesn't give. Although I've assured Carl that I'm not depressed, I'm beginning to wonder. The tears come so easily. The frustration. The scared feeling. The feeling that I simply can't handle all of it. Yet everyone else seems to have such confidence in my ability to just add one more thing. Just one more. Ask a busy person to get things done. At this point I have gone beyond busy.

So, I'm wondering how I'm even going to get through tomorrow. And the next day. And then maybe the day after that I'll have some time to breathe. Maybe. then again, maybe not.

At the very least, I know that regardless of what the MEI board decides about the Center for Guided Montessori Studies course, I can't add the video taping right now. Can't even contemplate how I would fit that one more thing into a life careening out of control.

Carl called Joan and Ken about getting together with them and then handed the phone to me to get the calendar straightened out. And I could have cried (actually did later) over thinking about spending a few hours of the little bit of time I have with someone else. How to get the laundry done that weekend. The grocery shopping, the dialysis AND go to dinner with friends.

How many evening meetings will I have to plow through this week? Then next? Only two next week. Is that cause for celebration? Or a death wish?

And then, if I could lose 50 pounds, it is possible that I COULD give a kidney to Carl. How does one do that when there isn't even time to exercise? Or when the gym membership has been forfeited because in addition to having no time, there isn't money to pay for it? I know how to lose weight by going to the gym 5 days a week and sometimes twice a day for different classes. I've done that. but not this time. How will that happen? How will I keep my sanity long enough to keep Carl alive? How will I cope?

What I want to say is that everything else, the school, the Middle School, MEI, are all NOT MY PRIORITY!!!! Saving Carl is my priority. I so envy those who can simply go to the transplant center of choice, where the survival rate is highest, and wait for their organ. Isn't life worth it? but I am tied down. Too many responsibilities.

What was it I read the other day? The longer a kidney patient is on dialysis, the less likely the transplant will be successful. Time is ticking away. Each day of successful dialysis I am glad that I made it through. And now I can see that Carl is getting worried about how well I'm coping. The crying is going to have to stop. Put on that happy face and go forward. Sigh.

People "out there" the normal folks, the ones who don't have medical issues to deal with, the ones who don't open the mail each day with ANOTHER bill that BCBS or Medicare won't cover, the ones who don't have to dedicate over 4 hours every day, day in, day out, to a life-saving medical procedure, the ones who can say, "in my spare time" - those folks don't have a clue.

How many blows does it take before ones just falls down and doesn't get back up? How often can one put on the professional face, walk into a room of waiting people and conduct a meeting without showing the inner anguish before the facade just cracks in two? How many times can a person suck it up before answering the phone before the phone just doesn't get answered?

I said to Carl that I thought I had earned the right to cry today. (Hours after the big blow. Hours of smiling and coping with school matters) I didn't understand him when he said that I hadn't earned it. but what he meant was that the right to cry was delivered to me through the wrongful actions of others. I neither earned it nor deserved it, but I had every right to cry.

I've had my share of dealing with loss of good will lately. But this! This goes beyond pulling the rug out from under my feet. And although the loss of good will is not aimed at me or coming from me, or even caused by me, it profoundly affects my whole life. Carl's life.

Perhaps even my livelihood. Because so help me, Carl's life means more to me than nearly anything else I can think of.

So don't say, it's only one donor. It isn't. It's two. And any future donors because I cannot in good conscience knowingly put them through the kind of inept human treatment they will encounter at the UT Medical Center. The live donor process at UT is over for us. How does one put positive spin on that? Good will squandered. The gift of life squandered.

I'm sad. I'm frustrated. I'm angry.

I got this today in an e-mail from a former parent from school:

"You and Carl, in my close up and faraway observation, have always rolled with the punches, normally with a shrug of the shoulders and a knowing smile on your faces. I see that as the essence of grace, and it's a gift to be able to see it and know it's there. For those around you, it acts as an anchor and a grounding to behold, I think we all have choices to make at any juncture, we can do it with grace or not, so you do what needs to be done, coming from that compass that knows right living. I'm just grateful that I know you both, and am able to witness lives lived well and lives lived with grace for each other and all those you touch."

The boyfriend of a former student said of me that I was like an earth mother who could take everyone in my arms in love.

A friend at RET said after showing me what Dale Carnegie wrote about grace, was that I was the embodiment of graciousness in his estimate.

HUH?

What do these people know that I am missing? I remember years ago when someone said that I was "nice." I thought it odd at the time because I had never aspired to be "nice." It isn't that I aspired to be naughty, either. I have had plenty of aspirations. They include: efficient, organized, successful (who doesn't?), smart, literate, and (last but not least) financially secure - could be read as "rich."

I've been doing lots of thinking about our relationships with others during our brief sojourn on earth. I recently confided in Carl that when I was younger I did not think other people were all that important. Definitely wrong there. My feelings on the topic now run more along the lines that relationships are the whole thing. What are we as individuals without our relationships with others?

I must have done something right along the way if I have engendered those feelings about me. I'm not bragging here. Just trying to figure it all out.

Years ago I had the opportunity to serve as the president of the board of the Appalachian Ballet Company. The artistic director of the ballet was Cheryl Van Meter. I remember observing her working with others and commenting that she had the amazing ability to create a sense that it was a privilege to serve the ballet. THAT to me is/was a tremendous gift. I suppose that I aspired to being able to do the same.

In a Montessori leadership class I have been taking, the question arose about the difference between being a leader and an administrator. That gets to the nub of this whole issue, I think. I consider myself an administrator rather than a leader. I would like to be a leader, but I don't feel that I live up to the qualities that make for a leader. Perhaps that is another aspiration I should add to the list.

What do I really want to be when I grow up? And do I still have the energy to work toward those dreams?

We took the last of the flow sheets in to the dialysis center today and picked up three (!) sets of lab vials for drawing blood for the Kt/V tests. Right after we left Karen called to tell us that the last test we delivered was still inadequate. She gave us instructions for resetting the machine to new parameters.

So, now we'll have to run 20 liters of dialysate instead of 18. That will up the treatment time by about 20 minutes. Carl was so disappointed when he realized it would be that long. Twenty minutes. It doesn't seem like much, but when you time is already so constrained, that can seem like an eternity. We'll find out this evening exactly how much additional time that will add, but simply doing the math of 7.2 liters/hour it comes out to be 16 2/3 minutes. those minutes on the machine are NEVER regular minutes. When the machine says there are only 55 minutes left, it always goes over an hour. So, I'm guessing that the 16 2/3 minutes will run about twenty.

this will affect our school schedule for the A weeks, because we only allow 4 hours from the time we leave school until the time we return. We will have to up that time now.

This is because Carl's body weight has gone up with his acquisition of winter "fat." Huh. I still can't find fat on him. In fact, it is hard to give him his Epogen shots because there is so little fat to inject into. None-the-less, that added 4 pounds has made all the difference.

I think this may be one of the reasons he is lobbying so strongly to get an elliptical trainer for home. If he can lose that weight, he'll be able to trim that 20 minutes back off his treatment. Now I understand! But until that time comes, we will have to follow the new treatment parameters. Oh well.

We went to the dialysis center yesterday to take the labs in to see if we will need to change Carl's treatment. The last results weren't at an adequate level. If we do need to change the treatment it will mean more time each day. Sigh.

While we were there Connie said that they call Carl Mr. Perfect! That is because overall his levels for everything are so good (and his treatments go so well without any bad hitches). I think I'm going to have to let her know that he will end up with back trouble if she keeps this up. His head will swell up so big that he won't be able to hold it up!

Connie did say to him that there isn't much competition. It is sad in some ways, because Carl is the picture of good health, except for this "little" problem with having PKD.

We forgot to get another set of lab vials while we were there, and we have to get the last of the flow sheets in to them tomorrow, so we are going to swing by there to take care of those chores in the morning. The lab results from yesterday may be in by then.

The treatment went by tonight in a flash. Or rather in a "flow" because I was in flow for most of it. I was working on my Grandmom stories. I got the introduction and the first chapter written. Boy, if I do this every day, I'll have it done in no time. I managed to shed some tears in the writing, but it wasn't bad.

Carl was doing research on line for elliptical trainers. He would like to buy one so we can use it at home. With all the time we spend on treatments, we hardly have time to go work out. Of course, working out at home will take commitment. And now that I've "found" writing, I'm not sure I will want to get on the elliptical instead!

While we were in Massachusetts, Willow asked me over and over again to tell her a tory about when I was a little girl. Carl estimates that I told over 100 of them. And during our drive home I kept thinking of more and more that I hadn't even told her.

So, I'm seriously thinking of writing them down for her. What a wonderful gift that would be for next year.

Among the stories I haven't told her are those centered around the horse shows that were held for several years in the field across the road from our house, Chris and I looking for the "underground railroad" in his basement, rummaging through the attic at Chris's house, my imaginary friend (Pookey), and running away from home. I didn't tell her about our dog Mournful, and how Mr. Younger shot him. Or about Carol Younger. I told her many stories about Miss Sylvia, but not about telling people that Miss Sylvia was 99 years old. I was convinced that she was, because when I asked her if she was 100 years old, she said, "Almost."

I can see a whole book evolving out of these stories. There would be the stories from living in Baltimore (like the Super Man story that I told her this trip), the stories of pets, stories with Chris (who died at the age of 32 leaving a young widow and two children), stories about school (I did tell her one of those), all the cousins (and even summers in Rock Hall before we moved there from Baltimore). I had a glorious childhood if you take away the constant ear pain and all the ear operations. Rock Hall was a marvelous place to grow up. The freedom, the space, the water and having my own boat. Having Chris as a neighbor, being able to walk the two miles to town whenever I wanted.

I didn't tell Willow the story of trying to walk to Chestertown with Donna. I told that one to Carl during our drive back to Tennessee. What a hoot! Two girls setting off to the big town (population 3000) a mere thirteen miles away. Only in rural America would that happen.

So I have my New Year's resolution. Put all those stories to paper.

On another note, Willow was actually a great helper during Carl's dialysis treatments. The drain line would not reach from his chair to the bathroom, so we drained into a mop bucket. At each half-hour reading I had to empty the bucket. Willow held a jar over the liquid in the bucket and transferred the drain line to the jar so nothing would drain onto the floor. She was careful not to let the jar touch the surface of the effluent and then held the line securely while I emptied the bucket. It was nice to have help.

Our first day there I told her that we were going to get iChat set up before we left so whe and I could have video connections after I left. She was fascinated and kept verifying the details of how we would be able to see one antoher while we were talking. The last night we were there she reminded me about getting iChat ready. Carl had informed me that we had already gotten everything ready, so we merely needed to hook up once we were home. Willow was ecstatic. And last night we had our first chat while Carl was having his treatment. She could see him in the background while we talked. I'm hoping it won't seem so hard to be so far away now. Still hard, though.

The last story I told Willow was about a grandmother who loved her granddaughter so much and lived so far away... She and I both cried.

We traveled up to Massachusetts with our machine and have been doing dialysis at our daughter's house the past three days. The first day we got a low venous pressure alarm as soon as I started the treatment, but it has been smooth sailing since then. It has interfered with our time to do things, though.

Last night we went to friends of our daughter's for Christmas dinner and some of the older folks sat around talking about various ailments. A couple of the ladies were very interested in the dialysis process. One man had been on dialysis briefly during a medical "situation" and was also interested in the six day treatments.

What was most comical was that there was age segregation. There parents of the main crowd ended up at the "children's" table. It was a hoot.

Carl's last kT/v was not adequate, so when we get back, I'll have to draw labs again. I have been worried about it, but Carl says that there really isn't anything to do about it. Karen at the clinic said that they aren't going to change the treatment until we do another kT/v to see if it really needs to be changed. I need to learn not to get so distraught over these things.

Not easy.

Another day to go before our long drive home again. I don't want to leave. Even though the weather is cold, the house is cold and Carl nearly freezes during treatment (he is using hot hands, a Russian woolly hat and tow blankets), I am going to really miss seeing this dear, dear family. And I don't know when we will be back up again. Sigh.

We got a call from the dialysis center today. The results of the last KT/V showed that the treatment is not sufficient. Before they change the treatment, though, we'll do another KT/V. I need the practice doing that anyway.

We have been packing everything up for the trip to Massachusetts. Oh, so much. We are even taking a cart for the cycler. I hope everything goes well while we are there. It looks like there is lots of construction along our route, so it might take longer than 15 hours...

Even though we only have to dialysze for four days, I've packed enough for 5 and some extra things in case something is bad. We are squeezing this trip in between snow storms. Tomorrow it looks like nice weather for the trip. But then snow again. I hope we don't freeze!!!

As soon as Carl finishes his treatment tonight, we have to finish packing the truck. I wish it had worked out to have an earlier treatment, but we had to use the truck to deliver a sofa to Sevierville today. So many responsibilities. but I have so much already completed. Woo hoo.

Trying out a new browser with my blog built into it. Does this work????

Dialysis is definitely ordinary now. Carl and I were both thinking (though separately) that we need to study up on the alarms and emergency procedures since we haven't experienced any in the three months since coming home with our machine. Well, the only alarms were from my not unclamping the lines one time and not entering the treatment parameters another. Nothing like air in the lines or pressures too high.

Dialysis is just part of our lives now. It does mean that I have to be more organized than ever. I have to plan meals around the times of day we are having treatments. I have to be extra alert to those evenings that we have meetings so we can dialyze earlier. I have to make sure I have the right kinds of food in the house for dinners around our schedule.

I have to keep up with two separate sets of inventory for two different dates. All the dialysate and machine supplies come from NxStage, while all the other medical supplies come from our dialysis center. Then I have to arrange the schedule at school to accommodate the delivery of supplies (a four-hour window for NxStage during which we go ahead and dialyze). I have to remember to fax the flow sheets in at the end of the month (the ones from after the monthly check-up).

Soon I will also have to remember to give Carl his weekly Epogen shot. His hemoglobin levels are slowly dropping to the point that he will need the Epogen. The shots don't bother me since I give insulin shots at school. It is just having to remember another task that doesn't happen every day.

Last week was definitely a stretch. Because some of the kids in my class had gone to Tremont with the other two teachers, Carl and I had to work 10 hours Wednesday, Thursday, and Friday. After those long days we had to come home and dialyze. On top of that, Carl needed to coach the new MMS treasurer about what he needed to be doing. We fit that in during dialysis on Thursday.

The strain on my body took its toll, though. Saturday morning I woke up with pain in my right lung. By Sunday any amount of effort caused coughing. It had not abated by Monday so I hied myself off to the doctor who prescribed a really potent antibiotic to ward off pneumonia (which fortunately had not yet set in). By Tuesday I was beginning to feel better, but I continue to use a face mask while hooking Carl up and taking him off the machine. There is no reason to take any risks.

The set up to my decline actually began the Sunday before. I'm no super-woman and the stress of our situation caused one of those nights of abject self-pity that left me crying and sleepless for most of the night that Sunday. None of my normal self pep talks were working and even Carl did not have any luck. So, the sleeplessness and exhaustion made it even easier for me to run out of steam as the week progressed. Plus, those Tremont days were nonstop with the students, since I had to cover all aspects of the classroom from reviewing the work to setting up the lunch area to monitoring group times to going out on the playground. Good grief. Just thinking back to it now makes me tired!

That is behind me, though.

The hard part is going to be when Britton leaves. He needs to find a position that will pay him more than working for us. With twins on the way he has a real need to make a better salary. There is no way that we can increase his pay because my salary went to paying for the extra teacher to take Carl's place. We can live on one salary, even though it is really tight. But we can't cut any out of Carl's salary to pay Britton more. There isn't any wiggle room for that. Sigh.

I discovered the site <http://www.ihatedialysis.com/> I was looking for some answers to questions and simply stumbled upon it. That site has been a real boon. There are many folks out there in far worse shape than Carl. And they seem to be surviving just fine. So I guess we can manage, too.

We planned dialysis for early this morning so we can go to my brother's to celebrate Thanksgiving. After I have Carl hooked up to the machine and start the pump there are a few more tasks to complete. As the blood starts flowing through the lines I have to watch the pressure, tape the luer locks so they don't accidentally disconnect and tape the lines down to the pillow for added security.

The machine is preset to 2oo ml/minute, but if the pressures are in the acceptable range, I gradually raise the rate to 400 ml/minute. I usually put my hands on the sides of the machine as it increases the rate of flow to feel the thrum of the pump ramping up.

This morning as the rate increased I said, "Thank you little machine. You are my reason for Thanksgiving." And then I started to cry. Which got the tears flowing for Carl, too. Right now, that machine - the intrusion into our lives - is what gives Carl life, and there is nothing greater to be thankful for this year.

The arterial stick hurt "as much as without cream" this morning. I was in that area that tends to be tender. I told Carl he was going to have to call whether I use that area of his fistula. It was a good clean stick, though tough. Once it was in and the pump was running, it didn't hurt any more. I'm trying not to let Carl's discomfort affect my performance too much. I don't want it to hurt, but it is a fact of dialysis that sometimes it will. As Dr. Miller said, patients went for years without the cream before it was developed.

I'm curious to see what the pressures do when we are camping over the weekend. Last time they ran much higher than usual. My theory is that the height of the machine in relation to Carl's body may have something to do with it. The only time I have had pressures that high was when we were camping. I even had to reduce the flow rate in order to have the pressures within acceptable range. That, in turn, increases the time Carl is on the machine.

All this is part of my responsibility to monitor. At least now I know I am up to the challenge.

I have had to draw upon reserves of diplomacy lately. It isn't even that I particularly want to be diplomatic, but it is for the best all around. One colleague said that I was too nice. But, when all is said and done, it pays to take the high road when having interactions that could be, well, dicey.

If you maintain dignity it won't come back to bite you.

Years ago, I got en-snarled in an ugly situation where I was unjustly accused of acting with dishonor. It was one of those gang-up situations. As a side bar, I don't think I have ever seen Carl as angry as he was during that whole episode.

But one of the individuals participating in (and very likely instigating) the ugliness was someone whom I had once considered a close friend. It really, truly hurt - a deep throbbing hurt that did not subside for a long time. I finally wrote a letter to the person and explained that I would continue to maintain a diplomatic professional relationship but could never again include her as someone I would call a friend. After all, friends step in when friends are accused of something you know couldn't be true. Isn't loyalty a part of friendship?

I still see this person. I'm cordial. But I miss the phone calls. I miss the visits back and forth. I really miss the friendship. I remain diplomatic.

But a small part of me wishes that I could simply forgive and forget.

An even smaller voice wonders if I was wrong. But she never once spoke up in our defense when the accusations were flying. And there was more than the flush of embarrassment when it became obvious that the accusations were false. There was shame etched in her face.

I miss the children, too. When I see that they are in the network of friends of many of my friends I long to invite them into my circle. I feel that circle is closed irrevocably.

Diplomacy. Not always easy. Hopefully the best policy.

Near the beginning of my dialysis journey I had the unfortunate habit of picking at my hangnails when I was under stress. The stress of learning how to stick the needles compounded with being in a hospital setting every day resulted in a horrible infected hangnail. I had pretty much eliminated the habit - I thought.

But stress reared its ugly head this weekend and I found myself absently picking again. I managed to make two hangnails bleed yesterday and topped it off with a third today! This time the stress has nothing to do with dialysis. I simply found myself in one of those less than pleasant situations where I had to be the bad guy, so to speak.

It turned out not to be as bad as I imagined. Isn't that often the case? There are boogey men out there, but the ones we create for ourselves loom larger and and more frightening simply from the fear of uncertainty.

My stress isn't gone. There is still plenty to stress over. But at least one onerous task is completed.

Change is a part of life. Without it, we would just be existing in a vacuum.

We had our clinic visit yesterday marking 2 months of home dialysis. At one point I wondered when it would all become a routine. No need to wonder any more. It is just one of those parts of the day. Taking the blood samples for the monthly lab work isn't routine, yet and I realized shortly before leaving for the clinic that I had goofed up the process! I had been going over and over in my mind the way to transfer the blood from the syringe into the vial without creating the blood spew we had last month. I focused on that so much that I forgot to let the machine run for 3 minutes at the end of the treatment before drawing the second vial of blood. So I'll have some additional practice on Monday. I'll have to draw more blood for the lab work then and Carl will have to run it into the clinic on Tuesday.

My realization of the error came when I was telling Britton how much I have to keep in my mind. Flash! The boo-boo was there in my mind.

Speaking of Britton, he told me during that same conversation that he will have to start looking for another job sooner rather than later. He wanted to wait to move on until after the school year ended. Britton is a rare person in his sense of responsibility. Now that they have twins on the way, he needs to find a better paying job. How I wish I could just pay him more and keep him with us. but I can't, and it is time for him to fly anyway.

So, how do we handle this impending change. Probably by simply managing dialysis after working our old 10 and a half hour day schedule. I'll have to draw the energy up from somewhere. And there goes working out to improve my health, too. Sigh. One step forward, two steps back.

So it felt a little ironic that they asked me at the clinic how I was doing with the dialysis schedule. Well, just fine now. Ask me agian in a few months.

Carl's sister called from ICU a couple nights ago. She was hoping to be transferred into rehab the next day. It was the first day that she could actually talk after he accident. She was the most up-beat I have heard her in years, which is another irony. Here she is with a shattered left arm, broken knee, broken foot, punctured lung and having lost both kidneys (not that they were doing her much good). Her biggest regret was that she will not be able to do her own dialysis until her left arm heals. She doesn't like to have anyone else stick her, so she sticks herself.

But what she was most positive about was that she may be moved to the transplant list now that she has no kidneys and the accident puts her in a different insurance category. She was still heavily sedated and didn't realize it was so close to Thanksgiving. She wanted to invite us up to celebrate with her. Before we disconnected she did realize that she would still be in the hospital for Thanksgiving. I hated to be the bearer of bad news. It didn't seem to be an issue, though. Hmmm. I think I need some of those pain killers!!!!

So, things change. We'll get through it all, I'm sure. The important thing is to remain positive, just like Carl's sister is right now.

Dialysis has been going well. On Halloween, we actually did the process without any numbing cream. We had had an unusual day at school and Carl just forgot to put any on before we left for home. We go everything set up and reached to point where Carl reaches for the paper towel I have laid out for him to use to wipe the cream off his arm and realized that we were high and dry, so to speak.

I lobbied for putting on the cream and waiting for a bit. After all, it was a Friday, and it wouldn't really matter if he was on the machine late. but Carl insisted that I go ahead and stick him without the cream.

He insisted that it really didn't hurt all that bad.

An "upgrade" in my care of Carl has been that when I am taking down the machine after the treatment, after I have removed the needles and I'm removing the cartridge and tubing from the machine, I disconnect the warmer bag from the rest of the lines and put it in Carl's hand. He is usually pretty cold by that time and that little bit of warmth is a small blessing. He is applying pressure to the super stoppers with his "good" hand, and can only sit and wait while I finish up what I'm doing.

I've discovered a couple of small ways to save a few seconds here and there. Instead of tearing the five syringes apart in their packaging, I just leave them together and open up the ends to remove them. I've learned how the trash bags are folded so I can get the two bags into the trash can in record time.

After taking the bag of bio-waste out to the big trash can, I pick up a cartridge package for the next day. these may seem like such small details, but every single time saving practice is a little more time for something else.

The other night I looked up from emptying the used dialysate bags and saw that Carl was crying. He couldn't even wipe his eyes since he was holding pressure on the access points. It made me cry. too. He said he was just overwhelmed thinking of all I have to do to take care of him.

But, to see him feeling so good is a wonderful reward.

When he went in to have his hemoglobin checked this week, he mentioned to them the rash-like problem he has been having along his access. They gave him Betadine wipes instead of alcohol wipes to try. But, ugh! They are a mess and must dry for 3 minutes before I can stick him. So that necessitated a small adjustment to our routine.

Now instead of our going through the checklist together, I do that alone while he is preparing his access. Then I key in the treatment parameters, wash may hands and put on my gloves. By then it has been nearly three minutes. But the Betadine makes it hard to see where the last stick was. I'm sure I'll get used to it. There is the increased likelihood of staining things, too, though. It really is a mess.

I find that the stress of not having time to get things done at school is beginning to take its toll on me. I'm operating right at the limit of my endurance and little things loom large. Like yesterday, we went into school early and I was hoping to get some office work completed. but when we got there, I found that the late staff had not done their snack set-up duties, so I had to do that instead, wash the dishes, prepare the juice, set up the carts. I thought I was just going to cry.

And I DID cry on the phone the other day. In front of a parent who had come for a conference, even. How embarrassing. I had just gotten back to school after being at home to do dialysis and was returning a call to the woman who was coming to do the first aid training at school. she wanted to know if we would change the date of the training once again AND go to Knoxville to do it on top of that! and to top it off, she said that since we wouldn't do that, we would have to pay more than the price that we agreed upon. I just broke down. I wasn't willing to change the date since I had already posted an invitation to the parent community to join us. I thought it was VERY unprofessional for her to ask us to change AGAIN to accommodate her convenience. But for me to cry over it. ?!?!? chalk it up to too much stress.

So we were thrilled that I got to be home for my birthday this year. That is one of the benefits of not being able to travel due to dialysis. We hadn't made any specific plans for a celebration, but that is just as well. It turns out that we'll be in a meeting after all. Duty before pleasure.

Sigh. I have to admit that this year has been unusually hard emotionally. Between not having free time, not being able to keep up with my training responsibilities, not being able to travel and not earning a salary this year, I have had little to celebrate.

Perhaps good times are around the corner. One can hope.

All in all our treatment went okay today until I was disconnecting Carl. The clamp on the venous line wasn't lined up properly, so when I disconnected the line blood oozed out all over the pillow cover. Yucky! I got it fixed, but Carl didn't want me to draw any saline to flush the blood back. He said there wasn't that much in the line to make much difference.

Then after getting both lines out of him, I said I wanted to take that pillow cover off and put a chux under his arm. Bad move. The arterial access started bleeding like crazy and we couldn't get it stopped. Blood soaked much of the chux and was just running down his arm. Finally by getting a 3x4 pressed on over the super stopper, we were able to stop the blood.

During treatment Carl had been doing all sorts of kidney research (actually trying to get off the transplant listserv at first because it wasn't proving helpful). He found all sorts of information about what the Mayo Clinic is doing regarding polycystic kidney disease. It made me feel incredibly sad that we didn't live closer to a Mayo Clinic. According to the information he found, UT is a partner transplant center. Hmmm. They told us they weren't. But that brought up in our minds that they still haven't even contacted us about the fact that Julie offered Carl a kidney. She contacted them MONTHS ago and they have not followed up at all. Of course we now know that she isn't a match, but she could be a partner donor.

The Mayo Clinic is working with kidney donors who aren't matches, too. They have several processes in place that make it possible to do transplants without it being a blood type or antigen match.

Anyway, the whole morning made me feel rather down.

We went in for our first official doctor visit yesterday. All went well. Carl STILL doesn't need any Epigen to keep his red blood cell count up. We can't quite figure that one out. But that means I don't have to give him any shots for at least the next couple of weeks. They will continue to monitor his blood count every two weeks.

I had a couple of questions about some of the things that have happened over the past month. While we were camping, the pressures (especially venous) started out much higher than I was used to seeing. In fact, I backed the flow rate down to ease the pressure for a bit, even though it meant for a longer time on the machine. Once the pressures started to fall within what I considered more normal range, I cranked up the flow again. My question was whether it is typical for the pressures to be higher toward the end of the week. They considered that it was perfectly normal. I'm not all the way convinced, though.

I also wanted to learn how to prevent the veins from "collapsing" when I'm doing the sticks. Carl thought that perhaps I needed to do the tourniquet tighter. It seems he is right. In fact, yesterday after the clinic visit, the sticks were about the smoothest they have been. Little things like that certainly help.

I definitely learned a lesson about drawing labs. Last month while we were still in the center, Karen whisked away the syringe and tube to "help me out" even though I had wanted to do it myself to get the practice. Well, I learned just how much I needed that practice this week. The sample tubes are vacuumized so they actually pull the blood into them. I wasn't aware of that and plunged the blood in. That created pressure within the tube, so when I removed the syringe blood sprayed EVERYWHERE. I had a massive clean-up job to do as soon as we got Carl's treatment going.

I'm feeling pretty confident anymore. There was one day that nearly unhinged me, though. The way the needle popped in was pretty violent. So much so that I really jumped when it happened. Then the pressure of the blood pumping against the needle was actually pushing it back out again while I was trying to tape it down. And it bled some during treatment. Argh! We think that I slightly cut the opening wider when I jumped. That was the worst I felt since my very first sticks.

All in all, though, we are getting used to the whole thing. It even worked out fine for us to go camping. Granted, it took an hour just to pack the dialysis supplies I needed for the two day trip, but that is little to complain about. We WERE able to go camping and dialysis was successful on the trip. It was a little cramped in our little camper during the treatment. So we started the "when we retire" dream sequence about having more time to camp and needing a larger camper. And why not dream big - not just a larger camper, why not an Airstream? Ha!

Fall break went by much too fast. We were just getting used to sleeping in late when we had to use the alarm again. Sigh.