Surprise

I have recently learned two things regarding kidney donation. One I was warned about and am just now experiencing firsthand. The other came as a surprise - unconvenient, but not horrible.

Before the surgery, I was told to expect some fatigue for several months afterward. It was explained to me that my body would be doing adjusting type things (mostly stregthening the remaining kidney) and it would take a certain amount of energy. Up until last week I thought they were wrong. I was feeling just fine without any extra napping or resting. However, when I caught this cold bug from my class, it proved that my system is still in recovery mode, whether I realized it or not. A simple headcold - something I would normally deal with for a couple of days and then send on its merry way - knocked me flat for a full week. Then, instead of going on to bother some other poor soul, it morphed into a wonderful sinus infection. Despite being on antibiotics for a full 48 hours (which would normally have me back to normal and forgetting to take my dosages), my head is still a pounding mess by 2:00 every afternoon. I am particularly surprised at how strongly this cold hit since Mikey - the human germ magnet - managed to get off scott free.

The second surprise happened when I went to the dentist on Monday. I guess that since I had a recent surgery that left small bits of what-have-you (clamps/staples) in me, I cannot have dental work done without either A) permission from my doctor or B) a round of "pre-med" antibiotics. This is because the bacteria released through a routine dental cleaning has been known to migrate to surgery spots and start infections. I had to reschedule my cleaning once again so the dental office can talk to the kidney office and work out what kind of precautions are necessary. I'm glad that my dentist is so concerned for the safety of my remaining kidney, but I'm a tad irritated that I have to wait until MAY for my cleaning.

It is particularly odd to have these little things pop up now that I am feeling 100% healed from the surgery. It is a little reminder that I will have to keep a closer watch on my health from now on. It is also a little (very little, I know) taste of what Amy goes through every day - needing to keep her health in mind every day, no matter how healthy she might feel.

Speaking of Being Sick...

me: lagging how...not producing?
her: hee hee, might have something to do with 4 of my drugs having insomnia as a side effect
her: yeah it takes longer for it [my darling kidney] to wash out all the fluid
her: I'm almost certain it's just the drug
her: but we are watching it pretty closley anyway
me: i'll have a chat with her...can't have her falling down on the job
me: not that she'll listen to me...you know how they are once they leave home...
her: it's got to be hard working when the whole body is in sick mode
me: no kidding
me: i was working on an equation the other day.
her: they are more likley to appreciate your advice once they leave home
her: what equation were you working on?
me: something about how the bodies energy level must be greater than or equal to the total of regular activity + recovery from illness activity + whatever the world throws at you on any given day
her: in that case I'm screwed
her: although I often balance the equation by lowering the regular activity because recovery from illness activity takes up most of what is allowed in the equation
me: i was trying to explain why i got knocked for a loop by a simple cold when normally they don't phase me. it's because my regular energy need is up as i bulk up the remaining kidney, my sick energy was already being tapped from an infection, and my energy income was low because of the diet i'm on.
me: seee...that's the trick
me: to tweak the equation where you can to balance the parts you can't help
her: yeah
her: in fact i"m doing that right now
her: if I were feeling well I would go and get a freezer and a card file and then go hang out at my store
me: but that would increase your RE needs...
her: yeah
her: and I'm not balancing the equation well as it is
her: the healing needs may outweigh the energy even if I don't add the other two things
me: is it YOU not balancing it well, or the fact that you have a fucked up equation to start with?
her: hee hee, I think it's the equation
me: so you gotta just do what you can
her: you have to factor drugs into both sides of the equation
her: it lowers both sides
her: which is nice on the healing side. . . not so nice on the energy side
me: and the energy income side can only be tweaked so much...if you up it too much you are just getting fat.
me: you = people
me: not you=you
her: hee hee
me: i gotta get some lunch...working on my EI, you know

The Patient

but boy have I seen a lot of doctors today! This is my first day of testing and I have been running all over the mazes of halls that make up Mayo Clinic and it's affiliates. I have had an ECG, blood tests, renal function tests (where you have to pee on command), consultations, and all kinds of waiting.

The one thing I have not had time for was eating. The other thing I have not had time for is sleeping. I am hungry and tired and ready to take a nap. No such luck. I have to have a chest x-ray in about an hour and then meet with the psychologist at 3. I will be able to rest a bit until 6 pm, when I have to take a powerful laxative to get me ready for tomorrow's tests. It will be a blast. Figuratively. I hope.

I am currently looking like I have serious problems because I have a BP cuff attached to my arm and a little machine in a bag strung around my neck. It will be taking my BP every 10 minutes for the rest of the day and every 20 minutes during the night. It doesn't hurt or anything, but I have to stop what I am doing and stand still when it starts to do its thing. Sometimes this happens at inopportune times.

My cousin has been here having some bloodwork today as well, although she is on her way home now. She really isn't feeling very good lately and I know she would like to get this transplant done as soon as possible. So far everything is pointing that way. (Oops...have to pause to get my arm squeezed! ... Okay, I'm back) One of the doctors told me that I was "in perfect health, a perfect donor" and so far all the tests have come out great. Keep your fingers crossed for me!

I am keeping a more thorough journal on the lap-top (this daily journaling has become a habit, I think), and I will be sure to fill you in on more details when I have more time. For now, I want to give Mikey a chance to do some surfing before our time runs out. Ciao!

PS - You wouldn't believe the ways my name has been butchered today! :)

The Good Stuff

1. I was positively wallowing in the happiness that is my classroom these days. Even when the kids are being brats, it is fun. Because they are being bratty in a friendly, funny, good-humored kind of way. They make me laugh on an hourly basis.

2. My team members were slathering me with good luck and well wishes for my testing next week. I am definitely going in high spirits.

3. I managed to get things ready for my sub. It isn't easy to plan for three days, because I do so much adapting of my schedule every day. I hope that I have left enough work to cover the time. These kiddos are always getting done faster than I expect! :)

4. My honey got me a special treat today. He says it is a Kidney Day present! :) I was completely and utterly surprised to find a copy of the 7th book of The Dark Tower series in my underwear drawer as I was packing. I didn't even know it was out yet. I now have something wonderful to read while I am flying and sitting around waiting for tests. What a wonderful guy I have. The book was accompanied by a very sweet letter that made me teary-eyed. I am one lucky girl.

Whoa

I have a busy day tomorrow. Not only do I have to finish writing lesson plans for the three days I am missing next week, but I also have to help set up the Fall Festival and I am supposed to work out. Given that my house is in no shape for me to leave, I think the working out is gonna have to wait.

PS - Amy, I hope you know of a hair place that will be open on Sunday, because I have been psyching myself up for a change in hair color for the last week. I have decided on Strawberry Blonde or something similar. :)

Not Alone

Okay, so after a day of gritching about my HARD, HARD life, I am feeling better. Two things were especially helpful in turning my outlook around.

1. I managed to track down my urine collection results - they had been sent to my regular doctor despite the way I carefully made sure that both labs had the contact information for the transplant coordinator at Mayo. My regular doctor (or rather her nurse) quickly responded to my phone call and took care of the problem efficiently. I HEART MY DOCTOR AND HER NURSE.

2. Amy posted her own version of Survival VII: Medical Madness. Reading it reminded me that I have been dealing with this for a month. She's been dealing with this for 5 years and will continue to deal with it for a very long time. That's why I am going through all this in the first place. You have my undying admiration, Amy.

I don't have things so bad. Sometimes I forget that.

The Down Side

So, I have reached the point of utter frustration with this transplant thing. Not with the desire to do it - that is still strong. But I am completely fed up with the way it is being handled.

Of all the people involved, I am the only one who has NO FREAKIN' IDEA what is going on. I have never done this, and I can only go on the information that is given to me each step of the way. So why is everyone being so damned stingy with information? This is how every test has gone so far...

Professional #1: You need to have Test A.
Me: Okay. How do I go about doing that?
Prof. #1: Just go to your local lab.
Me: Okay.
(later, usually either rushed before or after work on a busy day)
Me: I need to have Test A.
Lab Vampire: Well, should it be Test A1 or Test A2? And do you have this very important, necessary paperwork?
Me: Um. No.
Lab Vamp: I can't do it without that information.

This means that I then have to call back to Professional #1, usually during one of my breaks at school, and leave a message, because no medical professional EVER answers the freakin' phone. Then, I wait, hoping that Prof. #1 calls back during a time when I can sneak a phone call (cell phones are not supposed to be used at our school). I eventually get the information that Prof. #1 should have realized I would need in the first place. I mean, how many transplants has she been involved in? Grr. This has happened multiple times now. And I know that it is "typical", but that doesn't make it any less irritating. Especially when followed by this interaction...

Me: Just checking to make sure you got the results for Test A1 and A2.
Prof. #1: Let's see....nope. You'll have to call and find out what happened.

WTF???? I made a conscious decision as a teen to go into education, NOT medicine. Why am I the one who has to do all this? Let's see how it turns out...

(calling the lab)
Me: Prof. #1 never got the results of Test A1 and A2.
Lab Vamp: Well, I don't actually do that. I do the blood draws and such and send them off to The Big Lab. You'll have to call there.
(calling The Big Lab)
Me: I am trying to find the results of Test A1 and A2. I need them sent to The Hospital
Big Lab Vamp: Okay. Did you include the information for sending it there?
Me: I gave it to the Lab Vamp. I don't know if she sent it on or not, but she photocopied it.
BLV: Well, if she didn't send it, you will need to get your doctor's permission.

For crying out loud. I can't even win when I actually have the information I need. So this means more phone calls, more waiting, more rushing around dealing with medical crap when I should be dealing with school things. Why is this so hard. Why can't the people who do this procedure every freakin' day act like they have a clue? All I want to do is help out. Why does that always become an ordeal? No wonder most people could give a s**t about others. It is so much easier.

There has not been a single step of this that anyone has made easy or stress-free. I knew that going through this process long distance (I am two time zones away from all others involved) would make it more complicated, but I didn't realize that I would be the only one interested in finding/sharing information. The fact I am so far away makes it all the more imperative that I get the data I need in a timely fashion. I am supposed to fly to MN in 10 days, but I can't get anyone to help me fill out paperwork, verify tests, or anything. It is too long a trip (I will be missing 3 days of school) to take if it isn't necessary. I only have 4 weeks of sick leave, and I can't afford to be wasting 3 of them.

I guess I will just be hoping that I get the phone calls I need today. Hopefully, they will say that my last test results are in and good, and help me get this paperwork filled out and sent in. I don't know what more I can do.

Oops

I forgot to call Mayo to check up on my collection results. Gotta remember to do it tomorrow.

Kidney Update

We are currently in a holding pattern while the labs and doctors track down the results of my urine collection from last weekend. I did my part - collecting 3000+ ml* and turning them in first thing Monday morning**. I made sure to tell the Vampire Lady who to bill and where to send the results, but it seems that something got lost in translation. I spent several phone calls following the path of my errant collection, ending in the Big Lab telling me that they would take care of it. I will be calling first thing Monday morning to make sure they aren't the Big Fat Lying Lab.

In the meantime, I have been receiving near daily mailings from the Mayo clinic, each with a different set of instructions on how to fill out, mail in, not mail in, read, ignore, and dance on each page individually. Good lord. I am going to sit down this afternoon and sort through it all, completing what I can and making notes on what I can't. It's a good thing my appointment isn't until the 18th because I need that long to make heads or tails of the hospital beauracracy.

On a happier note, I managed to avoid a major observation at school because I am going to be in Rochester being manhandled by doctors. Hooray! Plus I got to look good 'cause I was able to tell the principal that "I would love to help you out, but...". Also school related: I have made lesson plans and photocopies that pretty much take me up to my October appointment. Within the next few weeks, I will get my lessons and copies done up for my big absense as well. Thank god for superb parent volunteers!

* I'm not sure exactly how much over 3000 ml, because I ran out of room in the official container and had to collect the rest in an old quart jar.

** When the Vampire Lady proceeded to poke me in the arm and once again left a HUGE, FREAKIN' BRUISE. I swear, she is the worst sticker in all of history.

Observations

*Standing in front of the fridge on a Sunday afternoon, looking for something to graze on, becomes less appealing when the most prominent thing in the fridge is your urine collection container.

*My mind is so focused on my bladder right now that it feels like I have to pee every 10 minutes. I know I have been drinking lots of water, but I suspect my darling kidneys are just doing their darndest to prove that they can pee for two.

*I can't help but wonder how my bladder is comparing to everyone else today. Each time I pee I question whether I am peeing too much or too little. Is the Vampire Lady at the lab going to think "Is that all?" or "All that?" when I hand her my collection of liquid gold?

*It is very strange to have to stop by the kitchen on my way to the bathroom. It just feels wierd.

Sacrifices

I sure hope that Amy appreciates what I am doing for her. No, I'm not talking about the kidney. I know she appreciates that. And besides, I don't really have to DO anything for that.

I'm talking about getting dressed and going to the gym on a Saturday morning instead of lounging in my pj's eating cookies. 'Cause that's the hard part. :)

Weekend Fun

After numerous frantic phone calls and runs to the clinic/lab, I am finally set to do my 24 hour urine completion. I haven't been broadcasting my intention to collect and save my urine to my co-workers, but I am sure they would be glad to know that I am not going to have to store my collection in the staff fridge. Instead, I will collect Sunday and turn it in first thing Monday morning.

Aren't you glad you know all this? :)

Plans

I have scheduled my 2 day kidney evaluation. (Dependent on getting my 24 hour collection finished, of course.) I will report to Mayo at 6:30 am on Monday, October 18 th and it should be finished by 5:00 pm the next day. I have arranged for a sub for Wednesday as well, to allow myself some travel/relaxation time afterwards. My current plan is to arrive sometime early in the weekend, so as to do some visiting. Anyone willing/able to pick up/drop off at the airport would be greatly appreciated. We may also be looking for a place to crash Saturday night in an attempt to avoid one night in a hotel. Depends on the schedule that gets worked out.

If all goes well for this round of testing, we will have a green light for the transplant. After talking with the coordinator, it looks like this will most likely happen around Nov. 22. Things could most definitely change between now and then, however. I'll keep you all posted.

Go Between

You would think that the people who do transplants for a living would have a good grasp on what you need to do to prepare for one. You might even suspect that they know what problems or questions will pop up along the way and be able to warn you of them or possibly even steer you around them. You would think.

Instead of getting my appointment made after being on hold for 15 minutes yesterday, I found out that I need an order form telling what particular kind of urine collection is needed. I would guess that this is a nation-wide thing. There probably aren't very many labs around the country who will do lab work for the fun of it. So, why wasn't this mentioned when I asked "So how do I go about getting this urine collection done?"

So, here I am, awaiting yet another call-back from the coordinator, who (because of the time zone difference) always manages to call at the most inopportune times, and getting antsy because nothing is getting done. I thought this would be the easy part.

What Goes Around, Comes Around

Wow. I was never worried about the monetary aspect of donating a kidney. On the practical side, we made sure we could afford it. I checked on my available sick leave, and Mikey checked on our finances. We would have dipped slightly into our savings, but we could definitely afford it. On the more spiritual side, I figure that what you give comes back to you ten-fold (can you imagine? 10 kidneys?), so I knew that no matter what, things would work out for the best.

Now I don't have to worry at all, because my aunt and uncle have offered to cover the costs of flying and housing during the testing and surgery. Since my cousin's insurance is covering everything else, we aren't going to have any trouble at all. Wow. It is amazing how generous people can be. Thanks muchly, Paul and Lynn! :)

With Flying Colors

I have always done well on tests - partly because I am just a good test taker, and partly because I am driven to succeed. I was one of those kids who asked to take a make-up test if I got a B-. Monday, I took a test for which I was totally unable to prepare. I sat in my chair during the test wishing I had studied more or prepared a bribe for the "teacher" or something that would assure me a passing score. All week, the question of my score sat in the back of my mind, quietly biding its time. Had I passed? Had I even come close? How was I going to handle a failure?

This morning the waiting came to an end when the transplant coordinator called me at about 8:30. As we exchanged pleasantries my brain was fidgeting like a hyperactive 4th grader, dancing around and tugging at our sleeves. She first re-affirmed that we were a blood type match. Then, instead of the "But..." I was so afraid I would hear she said, "And when we did the crossmatch there was no reaction between your blood and hers." No reaction. My heart skipped a beat as I double checked my brain files for what that meant. No reaction = good.

WWWWWWhhhhhhhhhhhhhhheeeeeeeeeeeeeeeeeeeeeeeee! Had I been at home I would have been dancing and shouting. As it was, I just gave "D" the thumbs up and a big grin. We finished our conversation and I hung up. No reaction. This was the only test I had ever taken and gotten a score of zero. And I was thrilled.

So suddenly, this kidney transplant thing is a discussion in reality rather than hypotheticals. I need to make some appointments on Monday - one for a 24 hour urine collection here in Temecula and the other for a 2 day battery of tests evaluating the health of my kidneys in Minnesota. Barring any unforseen problems, we will soon be talking transplant. Keep me and my kidneys in your thoughts...

Too many summaries!

I know it is time to stop grading when the little notes I write stop making sense.


And on a completely different subject, I am going to start calling the transplant coordinator to find out the results of my crossmatch. Keep your fingers crossed.

Vampire Lady

Yesterday morning I stopped at the lab before school to have my blood drawn. Although all we needed was three small vials, I left with two puncture holes and two bruised elbows. (Is the inside of your elbow still called your elbow?) The vampire who drew my blood failed to impress me much, what with the talking on her cell phone, digging around in my arm with the needle, telling me I should ship the results myself ("There's a UPS store just across the street. It wouldn't take you long." Like I wanted to walk in with a box marked "Attention - Human Blood"! And of course, she was still charging me for the handling.), losing the vacuum seal in the vials, and all. Eventually, it got done, it got shipped, and I got bandaged up and on my way.

Now I just sit and wait. I hate that.

Finally

For those who are wondering, I just got my blood draw kit in the mail yesterday. I will be going to the lab first thing Monday morning. From what they tell me, we should have numbers within the week. I'll keep you posted.

321...Contact

I talked with the transplant coordinator today at lunch. Thank goodness I had studied because I had to pass a verbal exam before I could play. There were some real doozies on it...like "Have you ever been diagnosed with high blood pressure?" and "Do you do recreational street drugs or marijuana?" I must have gotten a decent grade because she agreed to send me a blood test kit which should be arriving in the mail in about a week.

I also spent some time talking with a coworker today about the transplant process. Her daughter was born with kidney problems, had a transplant when she was very young (3 or 4 years old?) and they have been dealing with infections and rejections for the past 10 years. I guess her daughter had a cadaver donation instead of a live donor. Anyway, since she had experience with the medical aspect of it, she was able to be very blunt (she's like that anyway) about the risks I would be facing. She also reminded me to be very involved and knowledgable about what was happening, since not all doctors are as worthy of complete trust as others.

My brain is obviously busy processing this whole thing constantly, since the word kidney pops into my mind on a regular basis now. I don't think I have ever thought about a body part this much! I suppose that will wear off as I come to terms with the reality of this, but for now it is just silly. "Okay kids, I want you to list 5 nouns on your paper. Pick anything you want - desk, pineapple, armchair, kidney - just as long as it is a person, place, or thing." Sheesh.