"We cannot change the cards we are dealt, just how we play the hand." ~Randy Pausch

Tuesday, November 30, 2010

Glad To Be Back

It was nice to get out of town. Stressful, but at least I got to go on a little vacation. Saturday afternoon was the best. Jason, Alli, Anna and I got to go down the mountain by ourselves to have lunch and do the touristy stuff. We bought the girls each a magnet and Alli got a piece of rock candy. She was a mess...but she had a great time.

Missed an Extra Day

Since I have a social worker who can't do her job correctly I had three days off dialysis. Normally the most I skip is two days over a weekend. I was afraid that I would feel terrible by today. But I'm okay. It's hard to explain, but I don't feel refreshed and amazing, but I'm not sure I ever do! I'm tired and a little worn down, but not terrible or sick.

Back to My Arm

I was running on my catheter for two weeks. Now I'm back on my arm. The nurse numbed me first, but I think she stuck me wrong cause one of the needles hurt like hell going in. I'm glad I was on my catheter in Gatlinburg. The don't offer numbing at that unit. Yowzers!

Good News!

I got a call from Christ Hospital yesterday. They need me to come in for another blood draw for a donor match. It seems that one of my potential donors has stepped up and is moving along with the process. This is the test that has to be done within 24 hours of the other person's test. They are only there until 3:30, so it'll be tough not to miss school. But I'm sure I'll be able to find someone to cover my last class so I can leave a bit early. I'm waiting for a return call to set up the appointment. Yeah!

Friday, November 26, 2010

Did I Mention...

That my social worker is an idiot? Yes, the same lady who screwed up Florida. She's an idiot. She called when we were already in Tennessee to tell me that I'm dialyzing on Friday instead of Saturday. No big deal except I'm going to skip 3 days instead of 2 days. I'm not sure how it feels yo skip 3 days. She told me to watch my fluid intake. Hope I feel okay on Monday.


It's been nice so far. Everyone's really excited to spend time with Anna. She was great in the car, too. She blew up about a half hour before we made it to the cabin. I probably would have, too, if I was strapped into a car seat for 6 hours.

The cabin is nice. Perfect size for the 13 of us. We had a great Thanksgiving dinner. It was all-you-can-eat served family style. There was turkey, prime rib, pork chops, green beans, mashed potatoes, gravy, and stuffing. Alli loved the baked apples and kept saying it was the best meal she's ever had! I'm so glad.


I'm here now. We only got a little lost, but we made it on time. This unit is nice. I have a touch-screen tv. It's like one of those game systems on the end of a bar. I'm typing this on the tv while listening to 80's music on satellite radio. There are game that I plan on playing, too. The chairs are heated massage chairs. Amazing!

There are only three or four other people here. They are alot more normal than the people I usually run with. The nurses keep coming over because my blood pressure is running high. They're nice. I guess if I have to run then this is a nice place to do it.

I'm Thankful

So much has gone wrong lately, but I'm trying to think of all the things I'm thankful for. Here's a short list:
Jason, Alli and Anna
Mom, Dad and Brian
Anna's doctors and the Good Sam NICU
Kidney doctors, my OB, and the dialysis nurses
My co-workers and friends
and recently, Cap'n Crunch

Happy Thanksgiving!

Wednesday, November 24, 2010

A Real Vacation

On Monday, Brenda gave me the address of the place I'm going to dialyize in Gatlinburg. Today's the day we leave. I still haven't convinced myself that we're really going. I still have "Florida" on my mind. But now that I'm not pregnant my options are a little different. If I go and don't get dialyzed then I'll probably feel kind of crappy, but I won't die. I could always ask them to take off an extra kilo today and not be too worried about it all.

But, I'm assuming everything will be okay when we get there. I'm scheduled for 11:45 am on Saturday. So, I'll miss the afternoon fun, but be back in time for dinner. It should all be fine.

Treasurer Meeting

I had to meet with the District's treasurer yesterday to discuss my pay. I was a nervous wreck. I didn't sleep the night before and had a terrible stomach ache all morning until I saw her. And there was no reason to be upset. She just showed me what my pay would be for each paycheck for the rest of the year. And my insurance is fine...no need to worry. I accumulate 1 1/4 sick days a month, so I will only need to take 2 3/4 unpaid days a month for dialysis. Could be alot worse. She said that if I get a little bought of something and need to take a couple of days off then I'll need to write a letter to the School Board requesting unpaid time. But let's keep our fingers crossed that that won't happen!

Monday, November 22, 2010

Busy Days

Today and tomorrow are conference days at school. But I was told by my principal that I didn't have to worry about conferences this year, so I have lots of things planned.

I have dialysis this morning. It's on Monday, Wednesday and Saturday this week because of Thanksgiving being on a Thursday. So, I'm going to go home and change my clothes before conferences. I'll get there a little late, but no worry. Conferences are until 8:00.

Jason and I will leave a bit early because we are scheduled to meet Alli's teacher at 8:15. I'm excited to hear what she thinks about Alli's progress in school. Academically, she's great. I already know that. But I'd love to know how she's doing socially. I want to make sure she's sharing and getting along with others. Alli makes it sound like she's got lots of friends, but we'll see what the teacher says.

Tomorrow I have to pack for Gatlinburg. I'll need to pack for myself and the girls. That needs to be done before I meet with the District Treasurer. She wants to talk about my pay. I'm nervous about that. Then I head to conferences, again, until 8:00.

Wednesday morning is dialysis again and then we'll leave for Gatlinburg when I get off. I hope the ride is relaxing, but I've never been in a car for 6 hours with a 5 year old and a newborn. Anna usually falls asleep in the car. Let's hope.

I'm looking forward to a relaxing week in Gatlinburg. I hope it will be, at least. There will be so many people there willing to take care of Anna and Alli if I need a nap or something. Jason thinks the grandparents will offer to watch the girls so we can go out one night. Not sure about that. I think they will want to go out with us. Fun.

Saturday, November 20, 2010

Back to the Catheter

So, I guess we're using my catheter again. At least we have the past two treatments. My arm is a bruised mess and I think that they are afraid to use it. Fine with me. I can get on and off quicker. There's no need to stop the bleeding. They can just cap me off.

My blood pressure has been crazy high. It was 183/115 last night...crazy high! They are starting to think that I might be losing weight. Since they keep my dry weight the same (59 kgs) that would mean that I'm carrying less mass and more fluid. Extra fluid causes high blood pressure. [I can't imagine that I'm losing weight. I haven't been this light in my life. We had to go shopping for pants last weekend before I started back to school. I've never worn a 4 before.] I might need to increase my blood pressure medicine. I guess I'm sill taking a pretty small dose.

I'm a little frustrated with the whole transplant process. The coordinator called me the other day (after I called her more than once). She told me that there are two other tests I need to take care of. There was no mention of these tests four weeks ago when I had my blood taken. It's no big deal, but just annoying. The doctors here at dialysis suggested that I call her every day and bug her to get this process moving forward. One doctor wants me to get a fistula in my right arm and the other doctor thinks that crazy. Why should I do through that process again if I'm going to get a kidney? So, I told the coordinator this and she said "we'll see what we can do." We'll see.

Jason gave blood yesterday. He's O-. I knew he'd be an O. But I don't think they'll let him give me his kidney because of the girls. I know that my parents would help us. My mom even said the girls could live with them until we recover. But the question is, what if something happens to both of us? I think that's the main worry.

Thursday, November 18, 2010

Working While on Dialysis

I had to return to work right after dialysis on Tuesday. It was the first time, and it was okay. Of course, for the first time I had blood splattered on my shirt. Since I already had someone pass out on Monday, I had to find another shirt to wear before I went in. Note to self: Always pack a change of clothes!

I got to school with 3 minutes before my class started. It was raining, so the drive took longer than I expected. I parked BEHIND two other cars since there were no spots left and it was raining. And I think I was so rushed that I didn't have much time to think about how I was feeling. I made it through the day and when I got home I had a terrible headache and fell asleep. Sorry, Kelly W. I fell asleep while your daughter and Alli were playing in the house!

My headache continued through the night and I even woke up with a headache early Wednesday morning. But other than a headache, I'm okay.

More Bad News...

The doctor isn't happy about my arm. He's really leaning toward having me get another fistula in the other arm. Yesterday I noticed that my arm is bruised all the way up by my shoulder. That's not normal since it's nowhere near where they stick me. That means something is going wrong when I'm running. Great.

And I got an email from the District Treasurer who wasn't aware that I'm coming in late two days a week. She's concerned about "how we will do [my] pay going forward because of [my] sick leave balance." Super. This doesn't sound good to me, but I'm going to meet with her on Tuesday to see what's going on. My principal is still on my side and offered "whatever" I need. We'll see. It seems there is an exception to every rule, and I just think that I'm a serious exception.


I sent an email to my students' parents introducing myself and explaining (briefly) my situation. I received several response telling me that they are praying for us. The best email came from a woman who said she's been praying since May for an expectant mother named Kelly who is in kidney failure. She said that her name just showed up in her prayer box at church. Small world...amazing God.

Tuesday, November 16, 2010

Back to Work

Yesterday was interesting. It was my first day back. I wasn't very nervous. I've had a priority shift as you can imagine. So going back to work didn't stress me out; it can't.

It was really nice to see my coworkers. Everyone has been so great and supportive. I tried to talk with my students about my situation and about dialysis. But, with one mention of "needles" and "blood" one of my students hit the floor! She totally passed out and fell out of her chair! I could not believe it.

Then, later in the morning I was moving a box from one shelf to another and it fell. It hit me in the face and now I have a huge fat lip with a blood blister on it. There is a bloody mark from my tooth. too. I thought about packing up and going home after all that!

But the afternoon was great. Jason always sends me flowers on the first day of school. This was my first day of school, and there were the flowers. So nice. An anonymous family at school has asked if they can adopt our family this holiday season and "take care" of Christmas for us. I can't believe it! They usually adopt a family through their church, but this year they want to help us. I can't believe it! And they want to remain anonymous, so we may never know who our Christmas Angel is.

Finally, my last three classes were upper-classmen and seem like they are going to be lots of fun. They were very interested in my story and very interested in dialysis. They asked great questions and were very sympathetic. I'm looking forward to getting to know them as the year moves on.

We'll See How it Goes

Today is the day I'm nervous about. I'm on dialysis now and need to be back at school by 12:30. It shouldn't be a problem since they said I could come to the hospital at 7:00. But the nurses were in no hurry this morning. I got on around 7:15 and should get off around 11:30. That leaves enough time to stop bleeding and to get to school. We'll see how I'm feeling, too. I sometimes feel really worn out and other times I can make it till around 4:00 before I start feeling bad. I'm going to take some Tylenol even if I feel okay, just in case,

Saturday, November 13, 2010

Lots of Blockage

I had my arm worked on yesterday. I told them to give me more medicine this time since I felt everything they did last time. It was much better.

It turns out that there were several blockages in my arm. One place was 90% blocked, two were 70% blocked and several others were 20-30% blocked. I could tell they did some serious ballooning cause my arm hurts today. And now that I'm running, my pressure still isn't great. It's still higher than it should be. It worries me because the doctor mentioned that if we can't get this figured out they might have to put a fistula in my right arm. I will be pissed! I have a feeling they won't take the left one out first. I don't know if I can handle two fistulas.

Thursday, November 11, 2010

Stupid Arm

I hate my fistula. It sounds great...that's what everyone keeps saying. But the pressure is too high. And it's always high, so it's not just a bad stick that's causing a problem. So the doctor wants me to have it "ballooned" again. That's tomorrow. He said that if it doesn't work this time then I'll have to see the surgeon again. I'm not sure what that means...fix it, take it out, replace it with a graft? I do know one thing. Last time I had it done I could feel everything they did. I was given some medicine for the pain, but it didn't work. I was also supposed to get some medicine that sort of makes you forget what happened. Obviously, I still remember. And they didn't give me any pain medicine when I left. I need to make sure they know I was uncomfortable last time.

Sleeping Beauty

We fed Anna at 6:30 last night and she fell asleep around 8:30. She didn't wake up to eat again until 4:30! It was amazing! I'd love to think that this will continue...but I know better. Alli slept the whole night once and then it took several months for her to do it again. Here's hoping!

Tuesday, November 9, 2010

6 Days

I go back to work in 6 days. Yuck. I will work for one normal week (all day Monday, Wednesday, and Friday and afternoons Tuesday and Thursday). Then it's conference week. So I'll work Monday and Tuesday and then it's Gatlinburg for 5 days.

Yep, she told me for sure that I'm set for Gatlinburg. I have an 11:45 chair time on Saturday. It's the only time I'll need dialysis while we're down there. I'll just miss one afternoon of Shattuck-family-fun and be back for dinner. Not bad, I guess. I'm just glad to be able to get out of Dodge for a while.

Mr. B

Mr. B is a man in my pod. A week ago he just wasn't himself. He was talking about the helicopters outside his window (they were apparently blue and red and black). THEN, he talked about the rattle snakes here in the Unit. He looked at me and said, "You're still here? The gorillas haven't gotten you yet?" And he hasn't been back for a while. I guess he had pneumonia and when he has an infection he goes a little nutty. I'm glad he's back to normal.

Saturday, November 6, 2010


It's been a while since I spoke about Martha. I haven't seen her since I had Anna and started coming on Tuesday, Thursday and Saturday. A nurse just told me that Martha passed away. She always called out, "Lord, help me." She won't have to yell as loud from now on.

Also, Claire passed.

They lost four people this week.


Bigger Needles

I came in early today because we have people coming over this afternoon. I'm surprised that they were able to put me on before my schedlued time. The nurse used a larger needle this morning. Our thought is that with a bigger needle we can run the blood flow faster and I won't have to run as long. But he had trouble with one of the needles, so I've got one in my arm and one catheter running. I told them not to bother digging around with the second needle. I'd rather get out as soon as I can.


Anna's been throwing up alot so I brought her to the doctor yesterday. They checked her weight to make sure she's still gaining. And she is. She's 9 pounds 11 ounces! Still smaller than some babies I know when they were born. The doctor thinks its reflux. So she's starting a prescription for Zantac. It tastes terrible...yes I tasted it! It's pepperminty. Not really a flavor that a baby is used to. She has to take it three times a day. Poor thing.

Thursday, November 4, 2010

Back to Work...Soon!

I have 11 days till I go back to work. I'm not excited about it at all! I first got sick in May and haven't taught since. So I've really been off work for 6 months. It's hard to believe it's been that long. In some ways it's been the longest 6 months of my life.

I felt the urge to buy a lottery ticket yesterday. I guess I feel like I'm due for some good luck. Not so much this time. Not a winner.

Anna seems to be a little more alert these days. She's been looking around and following us with her eyes. Her neck is getting really strong, too. But she has been spitting up alot. It's been about a month that it's been happening. About 2 hours after we feed her she'll start gagging. Poor thing. We go to the doctor next week so we'll see what he says. She's still gaining weight, so it must no be that big of a deal, I guess.

Tuesday, November 2, 2010

Ready for Normalcy

What is normal? I know we all have a different normal...but I'm ready to get back to my old normal. This new normal is getting to be overwhelming. I only have dialysis this week, no other appointments, but it's still too much. I'm ready for normalcy. Plus, I have to start thinking about going back to school soon. I have less than two weeks left. Just working would be no big deal, but working and dealing with dialysis is going to be tough.

I still haven't heard directly from the social worker about Gatlinburg. The other one said she got the call several weeks ago. Not sure what she's trying to prove by not telling me. I don't like her.