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



Thursday, December 30, 2010

Under Weight

I've never come in to dialysis UNDER weight. But yesterday was a terrible day. Jason and I either caught some sort of bug or we ate something bad. Either way, we felt terrible. I drank three cans of Sprite and two glasses of water and they all just came back out. So today they are not taking any weight off of me, just cleaning my blood.

Taking Longer

I was right, Jason called the hospital as soon as he woke up on Tuesday. They told him that it's taking longer because they are testing him and another person at the same time. They were supposed to call him yesterday, but they didn't. I'm assuming they didn't call the lady from work, either, cause she didn't call me.

I Wish

I wish I had some fun things to talk about. But everyone just comes in and falls asleep. And nobody talks or screams in their sleep here. There is the one guy who said all he had to eat yesterday was a bag of popcorn. That's a whole lot more than I had! Other than that, everyone is pretty normal. Kinda boring.

Tuesday, December 28, 2010

Three Weeks

It's officially been three weeks since Jason was tested. I expect him to be on the phone calling the hospital as soon as he wakes up today. He's so anxious. The longer we wait the more anxious I get. I want to be able to post that we've found a match.

Sunday's Treatment

I came in heavy on Sunday and they decided to take an extra half of a kilo off of me during my treatment. I started off feeling fine, but toward the end I felt terrible. I was freezing cold and achy. I wasn't cramping, just achy. It was the roughest treatment I've had in a long time.

Today my weight was good. So, we're still bringing my weight down a half of a kilo, but it shouldn't be so bad this time...I hope.

Sunday, December 26, 2010

First Time in a Long Time

I had a bad night sleeping last night. For the first time in a long time I had trouble breathing. It was scary cause it felt like I did when I was pregnant. I'm not sure if it's because of my cough or because of the weight I gained. I gained 2.6 kilos (5.7 pounds). That's alot for me, but not alot for other people. Some come in up 8 or 9 kilos after a weekend. I could tell that I gained alot. I noticed it in my mid-section. My pants didn't fit well yesterday. That's odd for me. I usually notice the weight in my face. They are going to take off 3.6 kilos and see how I feel when I leave. In the meantime, I'm on oxygen...just like the 'good old days.'

Christmas

It was wonderful and difficult at the same time. It's hard to explain, but I'll try. Christmas Eve was just as normal. We went to my parents' house and opened gifts. This year we weren't able to give my parents what they deserve. They have done so much for us and we just couldn't repay them.

After that we went to church and then to my uncle's house. Again, we weren't able to buy the gifts we used to, so a couple of kids had their feelings hurt. I felt terrible. And after a $10 gift card exchange, Jason and I left with ALL of the gift cards. So nice, but I feel like a big loser.

Christmas morning was the best, and the worst, I think. Our Christmas Angel at school supplied nearly all of the gifts we opened. Alli was not at all disappointed and she kept saying all day that she had a great Christmas. But what kind of Mom can't buy her kids Christmas gifts? Again, I felt like a loser. I'm so gratful for all of the help that we've received this year. But I'm so proud. It's hard for me to take and not be able to give.

Although I know I'm being taught a lesson, it's a lesson hard learned. I know that I'm supposed to take help when it's offered and take it with a smile. But I want so badly to pay it forward. One day I will. One day.

Still Waiting

We're still waiting to hear from the hospital. We really should hear by this week. I just hope they haven't decided to take the week off. I'm not sure Jason will be able to wait that long.

Thursday, December 23, 2010

Merry Christmas!

My lungs sound good, says the nurse. My cough sounds terrible. It's just a cold, no big deal. It's just irritating.

A Few Days Off

Yesterday was our last of school before break. I know I haven't been working much this year, but I'm as excited as everyone else to get a break. I still had to get up early this morning, but tomorrow I get to sleep in. I don't remember the last time I got to sleep in.

Since Christmas is on a Saturday my dialysis schedule is different this week. They are open on Sunday instead of Saturday. Same thing for New Year's Day.

No Word Yet

Jason called the hospital yesterday to see if there is any word on our tests. The lady told him that it's going to be one more week. My worry is that they will be taking next week off and we won't hear anything for a while longer. But when Jason told her that he wanted to use this as my Christmas present, she said she'd make a call and try to "light a fire." She said she'd try to call today. I think Jason and my friend from work are more anxious than I am. Can you imagine if we found out we had a match right before Christmas. Amazing!

Tuesday, December 21, 2010

Oh, This Cough!

Generally I'm feeling good. But this cough is killing me! I normally get a cough at the end of a cold, but this time the cough came on its own. I'm sleeping alright which is odd. But when I'm awake I'm a mess. They are looking at me here in dialysis like I'm dying. Sure hope not.

No Need To Rush

Today will be the first day that I have to run from dialysis in Delhi to school. But since I'm on an hour earlier, and since they are still running me on my catheter, I won't have to feel as rushed. In fact, since I have to take a half day off of work anyway, I'll have time to go home and take a shower before I head in. Normally I take a shower before I go to dialysis. But that would mean I'd have to get up at 5:00 am, and that's not going to happen!

Lots of Weight...For Me

I gained alot of weight this weekend. For me, anyway. I gained 2.5 kilos (5.5 pounds) over three days. I could tell by the way my jeans were fitting. I also woke up with terrible bags under my eyes today. Every time I got a tickle in my throat I had to take a drink. I had a hard time watching my fluid intake.

Over Two Weeks

It's been just over two weeks since Jason and my friend at work were tested. We're supposed to hear something in two to three weeks. She promised to call me when she hears something. I told her to call at ANY time. I sorta hope it's Jason that's a match. That way we don't have to inconvenience anyone else's family. It'll be a rough summer for us. But it's been a rough year, so what the heck.

Saturday, December 18, 2010

Nice People

Dialysis in Delhi is nice. When I was set to leave on Thursday the snow was coming down really hard. And when I got out to my car I realized that I didn't have a scraper. So, I found a piece of cardboard to brush off the powdery snow. I sat in the car with my defrosters on waiting for some of the ice to melt down before I took off. But this older man who was dropping of his wife decided to scrape my windows for me. I'm sure he thought I was crazy for not doing it myself...or else he thought I was helpless. Either way, it was nice of him to help.

I also recognized another lady who was dropping someone off. She goes to our church and she gave me a look like "What the hell are you doing here?" I only said "hello" so I'm sure I'll have to explain sooner or later.

Now that I'm closer to home I guess I'm going to start running into more people who know me. My nurse today said, "So, I hear you're a teacher at Oak Hills." That's usually followed by, 'Do you know...?' She mentioned her son's name and I didn't recognize it. I explained that I haven't been in school for very long and I'm still learning names. But, I looked him up and there he was in my first bell. She didn't seem offended that I didn't know him. "He's really quiet," she kept saying.

My Own Bag

The hospital used to get patients a blanket and pillow when you want one. Not here, you need to bring your own. But, they gave me my own dialysis bag with a blanket and pillow that I can keep in my trunk. It also had some headphones for the TV. Everyone has their own bag when they come in. It's like we're in our own little club. Cute.

Ms. T

It's harder to know people's names here. At the hospital we each had a box of supplies with our names on them. They have a different system here. But I'm going to call the crazy old lady from last time Ms. T. She's not as crazy as I thought. She's really nice. I found out today that her husband died of sinus cancer. I've never heard of such a thing! She's been living alone since 1981. No wonder she has such a strong personality. You've got to be tough to be able to take care of yourself for that long.

Thursday, December 16, 2010

A New Adventure


Today is my first day at the DaVita in Delhi. And it was a pain getting here! We woke up to about 2 inches on snow. The roads in my neighborhood weren't good, and Delhi Pike was worse. It took me about 15 minutes to get here. I think it would normally take 5. Good thing, cause I have to be here really early! They can get me on at 6:15 am. And today I was the only one here at that time. They got me on a little early, so I should be done before 10 am.

The Unit seems very similar to the one in Gatlinburg. There are about 12 chairs and a couple of beds. Each has a television, but these are mounted on the ceiling above each patient. I have a remote control at my chair kind of like in a hospital room. The sound comes out of the remote. I tried to use my ear buds but they didn't work.

I spend most dialysis treatments watching the Today Show. I realized today that coming in an hour early means I don't have to watch Hoda and Kathie Lee anymore. Hooray!

Anna's Doctor Visit

Anna had her 4 month check up yesterday. She weighs 11 pounds 2 ounces. Everyone is really pleased with how she's doing. Her length and weight is right in line with a 2 month old (her adjusted age). Her head is a little big, but she comes by that honestly. She comes from a long line of big-headed family members. She is doing things that I remember Alli doing when she was 2 months old, so I'm happy.

Anna had two shots yesterday. And she didn't cry with the first one. I was very surprised. But the second one did her in. I think her legs were bothering her last night after the shots, too. I gave her some Tylenol and that sort of settled her down a bit.

Back To The Unit

I think I might end up having some good stories about people here in the Unit. A strange looking old lady just came in. She seems to be in her 70's. She has long white hair passed her shoulders. She's wearing snow boots with heals on them, and having a hard time walking in them. She placed two Dumb-dumb suckers on the chair next to hers. I guess she's leaving them for a friend. And now she just waved her fist at one of the nurses, not in anger, but to be funny. She's going to be fun, I can tell!

Tuesday, December 14, 2010

One Last Time


I got a call yesterday saying they can take me at Delhi. In fact, today is my last day here at the hospital. I was excited, but sad, and shocked that it would happen so quickly. And I wanted to give the staff here something to thank them for everything they have done for me. So, Alli and I made some cookies and chocolate covered pretzels last night. I was pretty emotional last night. Less so today, which is odd. One of the nurses said, "We don't have many people like you here. We have lots of old people who scream and poop their pants." I guess they might miss me. I'm pretty easy.

Anna

Anna is officially four months old, but her adjusted age is just two months. We were looking at some pictures of Alli last night and it seems that Anna is doing things now that Alli did when she was two months old. She is smiling more and more, and even coo-ing at times. She slept for nearly twelve hours last night. And Alli's pictures look just like Anna. At Anna's baptism on Sunday, most people couldn't believe how much Anna looks like her big sister.

Baptism

Sunday was Anna's baptism. It was a great day. I can honestly say that I wasn't sure we'd make it to this special day. We even though about baptising her while she was in the NICU just in case. But we made it and had a great day. We had nearly 50 people at church and back at the house. City BBQ did the food and it was great. We ordered just the right amount. We have some left-over chicken which I'm planning on making into different meals (chicken fried rice, chicken soup, chicken ala king, chicken enchiladas, etc.) Sounds like Forrest Gump.

Thanks to Martha and Kevin for their help on Sunday. What great friends!

Saturday, December 11, 2010

Busy...Stress...Good Pressure

Wow, this week has been busy and stressful. We had something to do every day. And we're not done. After dialysis today we have lunch with Santa. Jason's got a bowling tournament all day. We have to, some time, find time to clean the house before the Baptism on Sunday. We'd like to clean up the basement so we can have people play pool and ping pong.

But my blood pressure is good. It's much better than it's been in a long time. I feel better, too.

I got a call from Davita in Delhi. They might have a chair for me at 6:00 in the morning. It's an hour earlier, but I will still have to take half days off on Tuesdays and Thursdays. But my drive time will be cut in half. Yes!

Thursday, December 9, 2010

Time and Meds Adjusted

My blood pressure has been really high. When I came in on Tuesday it was 200/115. So the nurse told me to say something to the doctor. I did and he decided to double both of my blood pressure medicines. And I think it's working. The past few days I would say that I don't feel wound quite so tight. And I haven't had a headache in a few days. Who knew that your kidneys had so much effect on your blood pressure?

One test that they do monthly is to test for the bad stuff in my blood BEFORE treatment and then again AFTER treatment. Then they find a percentage that represents how clean my blood got. It's called the URR. It needs to be above 65%. Mine was 75% this month which means my treatments are working well. So they decided to lower my time from 4 hours 15 minutes to just 4 hours. It doesn't seem like a lot, but it's enough that I'm not as rushed getting to school on time.

Good stuff.

Tuesday, December 7, 2010

This is the Test

The test we're doing this week is the one that tells us if we've found a match. And we'll know the results in 2-3 weeks. The potential donors will be contacted when the results come in and they will have to decide what they want to tell me. If they are a match and change their mind about donating they can tell me they are not a match. I'd rather think they are not a match than have them worry about telling me that they changed their mind. Of course, I would never blame a person for deciding not to donate. What a huge commitment!

So, Jason gets his blood drawn today and a co-worker and I had ours done yesterday. Hopefully one of them will be a match and then things move rather quickly. The donor will need to have a physical, an EKG, an ultrasound of their kidney, and will need to meet with a social worker. And I'm told most of these appointments can take place on the same day.

If my co-worker is a match, we'll have the surgery when she wants to. It'll be 100% her call. If it's Jason, then we'll do it in late May or early June. That way I will not need to take any more time off of work. The recovery time for me will be 12 weeks. I should be ready to return to school in August if all goes well.

Two to three weeks...Merry Christmas!

Saturday, December 4, 2010

I Can See a Light

I keep saying that it's hard to see the light at the end of this very long and dark tunnel. But Thursday was a bit of a break-through. Not only are TWO people getting tested early next week, but other good things are happening.

First, they sent my paperwork to DaVita in Delhi. I might get to start dialyzing closer to home. It would cut back on my travel time tremendously! Plus, they get people on at 5:00 am. That's two hours earlier than here at the hospital.

Next, we're discussing HOME dialysis. There are two different kinds, but both can be done while I'm sleeping! AHH! That means I could work full days every day! Everyone keeps saying I'm a perfect candidate for home dialysis. I guess you need to be half-way intelligent and highly motivated. I'm definitely motivated.

I've sort of been floating on air the past few days. I can see a light at the end of this tunnel. It's just a glimmer of hope, but without hope I might not be able to make it.

Kidney Doctor

A nurse told me today that my kidney doctor said he felt like a grandpa when Anna was born. I can't believe I haven't sent him a thank-you yet. Of all of my doctors, he's been the one that's always been on my side. Guess I know what I'm doing during dialysis today.

Thursday, December 2, 2010

Moving Right Along

I have an appointment to have some more blood drawn at Christ. A lady at work, a wonderful, kind lady, has made an appointment to see if we are compatible. She was told over the phone that if we aren't a perfect match then there are lots of medications that I could take to prevent rejection. I'm so excited!

Also, Jason got a call. The coordinator wants to talk to him about the next step in transplant. He's going to try to get an appointment on Monday or Tuesday. I think that we have to have our blood drawn within 24 hours of each other. I'm nervous about him trying to donate. I know that we'll both need help after the surgery. My parents said they'd take the girls for us while we recover. And I'm SURE there are tons of people who would come sit with the two of us. But, I worry. Of course I do...I've always been a worrier.

Bye-Bye Social Worker

I got a letter from my social worker today. It said that "it would be in both of our best interest" if she no longer handled my case. You think! I tried to request the other lady for this trip anyway. Not sure why I was stuck with this one again. Thank goodness!

Lost

I think I lost my phone. I can't find it anywhere. I feel so lost. Most of my doctors have my cell number. Hope they'll try my home number, too.

Blood Pressure

My pressure has been crazy high, so my doctors increased one of my meds. When I came in today it was much better. And it's only been one day of the increased meds. Yeah!