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

Saturday, January 29, 2011

Too Dry

I saw my cardiologist yesterday. Before I even walked in her office she said, "You're too skinny. Are you okay?" Finally! It's about time someone noticed. I told her that the doctors here want to keep lowering my dry weight because my blood pressure is high. She is worried that I'm so dry that my heart rate is elevated. She prescribed another blood pressure medicine and called the kidney doctors to yell at them for drying me out so much. She used the words "dry as a prune." Nice image.

I'm still on 17-gauge needles. But on Tuesday they will use 16- and next week 15-. As the needle gets bigger I will get a better treatment because the blood can flow faster. And once we get to the biggest needles they will take my catheter out. I can't wait! The other day Alli woke up and said, "Mama, I hope nobody else in our family needs to have tubes in them." Sick Mom. She also said that I have to go to the hospital alot. Sick Mom.

Thursday, January 27, 2011

No Worries

Jason went to Christ yesterday to meet with the social worker. I was so nervous, and I think he was, too. But it went great! He said he "passed." He answered questions about his medical history, his family's medical history and our jobs and support system. He told her that almost all of our friends are teachers or stay at home moms, so we'll have a ton of support as we recover. We'll need help vacuuming and doing laundry. We won't be able to lift anything for a while. But we'll get through it with help.

The next step is a physical with a physician's assistant on Tuesday. Then he has to do a 24-hour urine collection on Super Bowl Sunday. Yes, he's allowed to drink beer, he just has to drink alot of water, too. He'll bring his sample to the hospital the next day and will have his EKG and an ultrasound. Then we set a date!

I'm still having a hard time believing this is really happening.

Now We're Cussing, Too

It's normal for the lady across the room to scream when they stick her. But today she must be in a particularly bad mood. Cause when they tried to stick her this morning she did more than just yell. She was cursing like a sailor. "I wish you'd stop this s**t," she yelled. "Stop, you MFer!" Yikes!

Lowering My Weight

If you've seen me lately you'd wonder what they are doing to me. Lowering my weight? I already look like a twig. But my blood pressure is still high and they think it's because I have too much fluid on. So they are bringing me down another kilo to 56.5 (about 124 pounds). I may shrivel away before we have the surgery! I meet with my cardiologist tomorrow, so maybe she'll adjust my meds so that I can keep some extra weight on.

Tuesday, January 25, 2011

The Screamers

We've got two of them today. The lady across the Unit always screams. But today, Ms. T was screaming. Her arm clotted on Saturday so she got to go home. Nice, but today's treatment will probably be hard for her. She said she had to go to the Access Center to have her arm worked on and she was afraid to use her cream this morning. I would have called to make sure I could use it. She uses much larger needles than I do, too. Yowzers!

Jason to Christ

Tomorrow is a big day for Jason, and me. He goes to the hospital to meet with the social worker. I'm afraid they are going to try to talk him out of it. He's afraid that his humor will make them think he's not serious. Like when he says he's only going to do it so he doesn't have to buy me a Christmas gift EVER again.

Big Gain

I gained 2.9 kilos this weekend, almost 6.5 pounds. We did alot of work around the house this weekend, and I guess I drank alot of water when I was tired and worn out. We took down wall paper...I should have had something stronger than water!

Thursday, January 20, 2011

Not As Nice

Getting stuck this morning was not as nice as Tuesday. I guess they missed the exact spot where I put the cream. And then it wouldn't start right so she had to dig a little. But I'm still alive.

Jason got a call yesterday about setting up an appointment with the nephrologist. He has to have a physical to move forward with the transplant process. Yay! We're moving forward.

Snow Day!

Tuesday, January 18, 2011

Yep, My Arm

I walked in and decided to tell the tech that the doctor wants to use my arm. No use delaying the inevitable. And I remembered my cream today, so I guess it's time. But as soon as we started the discussion the lady across the room screamed. Great. I made a face and everyone just giggled. Then another scream. Are you kidding? Today? The tech sticking her said not to worry. She screams just to be screaming. Fantastic.

So, I got up about 15 minutes early to put my cream on. I have to wrap my arm in plastic wrap after it's applied. Jason thinks that it helps it work better, but I think it's just so it doesn't get on my clothes. When she started feeling my arm I could tell it was numb. Promising, but I wondered how deep the numb was. "One, two, three, OUCH," says the tech. But I didn't feel it. Amazing! Again, "One, two, three, OUCH." Not a thing. I LOVE this cream! It's well worth getting up 15 minutes early.

Uh, looks like someone is leaving. Not sure what's going on, but a patient who is normally here with me is packing up. Weird. It's a day after a weekend, so she really needs to be here. But what do I know.

I gained 2.5 kilos this weekend. That's the most I gain. I was super thirsty yesterday. Last time I gained this much I had a tough treatment. Good thing the kids are taking tests today. I might need a rest.

Saturday, January 15, 2011

My Arm, Again!

Here we go. The doctor didn't know that I have a fistula. I guess I did a good job of hiding it...I hate getting stuck. But, he figured it out and now he wants to start using it again. Dang it! But he might need to send me to the Access Center again to have it cleaned up. I don't know why. It seems that every time they "balloon" it the pressure is still high the very next day.

Today I walked in and they had the needles ready to go. But I didn't put my numbing cream on this morning. I didn't want to sound like the lady across the way, so I talked them into using my catheter one more time. On Tuesday I'll put the cream on before I get here. But they tell me I should put it on about and hour before I get here. Problem is I only get up half an hour before I'm supposed to be here. Guess I need to start getting up earlier. Maybe I could sit and eat breakfast in the morning. Might be nice.

Thursday, January 13, 2011

Lots of Labs

They just drew some labs on me again today. It looked like the normal amount. But the tech who drew them said she hasn't drawn this many labs in years. Really? I guess I'm still a special case. Who would have thought?

Snow Day

We did end up being cancelled on Tuesday. Jason lost his sub job that day. But we ended up ahead because I didn't have to take my half-day. I guess my half-day is worth more than his full day.

Jason's been working every day since he stopped student teaching. Thank goodness! We like having two incomes again. Now's the time for him to start looking for a job for next year. That would be another prayer answered. He probably won't be able to interview during the summer if we have the surgery, so the sooner the better.


Apparently the Tuesday, Thursday, Saturday group is generally an odd group of people. A tech on Tuesday told me that they aren't all like me. She said that the MWF people are usually more interested in their care and have jobs. I always thought there was a pretty odd group here with me.


I think someone forgot her numbing cream this morning. We all have a prescription for cream to put on our arms so that when they stick us it doesn't hurt so bad. But this morning one of the patients was screaming when she was being stuck. Yikes! I'm glad they are still running me on my catheter. It's supposed to be dangerous to keep a catheter for this long. But I haven't had an infection, so they aren't really against keeping it until we have the surgery. I can't wait to get it out.

Tuesday, January 11, 2011

We'll See

A 2-hour delay without a flake on the ground. Interesting. They say the snow is coming and will be falling around 9:00, when we should be coming in to school. I bet we'll be closed. We'll see. But if we're not, I should be able to get into school without needing a sub. That means I should be able to save my 1/2 sick day. That would be nice...especially since I just figured out how much money I lose when I take a 1/2 day off. I think I'd rather keep the delay because Jason has a sub job today. If we're closed he doesn't get paid. That would stink.

The radar looks like a scary blue blob is coming our way.

Insurance Issues

I'm not sure what's going on, but recently I've been having insurance issues. They say they aren't going to pay for our trip to Gatlinburg because it wasn't pre-approved. Who's fault is that? Can anyone say BRENDA? And I just got something in the mail saying they aren't going to pay for the labs that were drawn on my first day here at DaVita. That's another $2,300. I'm going to talk to the social worker here to see what she can do about fixing it for me. She seems to be a bit more competent than Brenda. We'll see after this one.

Puffy Eyes

I've been waking up with really puffy eyes lately. When all of this started I was waking up the same way. I just took some extra anti-inflammatory medicine and called it a day. Then I read that kidney failure can cause puffy eyes. Great.

I got an email from a friend whose step-dad got a kidney transplant and he said that the moment he woke up from the surgery the world was different, better. He felt great. Food tasted better. I'm hoping so much that this is true for me. She also said that her mom, who donated the kidney, felt terrible for 2 or 3 weeks. I don't want Jason to feel terrible, but it will only be for a short time. And I'll feel great for a long time! It's a trade off, I guess.

Saturday, January 8, 2011

Nothing New

I don't have much to report on today. Everyone at school is really excited for us. I'm getting hugs and emails from people every day. Everyone questions when we'll have the surgery and is excited to hear that it will (hopefully) be after the school year.

Everyone here is really quiet today. It's not like at the hospital where everyone was screaming and moaning. I am surprised by the number of patients who are brought in by "transportation" from nursing homes and such. I thought you'd have to be more independent to come to a place like this.

Thursday, January 6, 2011

Now What?

Good question. They told Jason that the next thing he had to do was meet with a social worker and get a physical with a nephrologist. I remember hearing something about an ultrasound and an EKG as well. The transplant coordinator said these appointments could all be done in one day. Then it's just finding the date for the surgery. It's supposed to move pretty fast from here on out. I can't believe it!

Did I mention that I won the Mega Millions, too? Yup. $4 to split with 5 other people. That's 67 cents a person. How lucky am I?

They say luck comes in threes. What could possibly come next? A snow day tomorrow?

Wednesday, January 5, 2011

It's A Match!

Jason came into school today with a kidney-shaped note for me. It said, "I hear you're looking for a kidney. Well, I have two good ones and they say we're a match!" Finally! A prayer has been answered! We haven't had time to talk about our next step...but I'm just so relieved.

It's unusual for a spouce to be a match, but someone up there is looking out for us. That's been obvious from day one. I got sick right at the end of the school year, so I didn't miss many days of work then. My mom's job was eliminated, so she could start baby sitting for us. Anna came to us without a single health issue. Our insurance has been amazing. School has been amazing. I'm being looked after, for sure.

We've said from the beginning that we would like to have the surgery in late May or early June so that I can recover over the summer. Of course, if the doctors think otherwise then they'll make the call. If I can make it with dialysis until the summer then that's what we'd like to do.

I don't usually post on Wednesdays, but I thought this was deserving of a message. I'm sure I'll have more to say tomorrow after we go out to dinner to celebrate our good news! Yay!

Tuesday, January 4, 2011

Almost Didn't Make It

Yikes! My alarm went off like usual, but I didn't hear it I guess. I woke up 15 minutes late and almost didn't make it in on time. They were waiting for me at 6:00. I got on at 6:10.

Close Call

On Sunday they had to call the life squad for a patient. I'm not quite sure what happened, but they all ran over to him when the alarm went off. Usually that means a person's blood pressure dropped too low. The nurses and techs laid his chair back and were yelling at him to respond. They got no answer so they called 911. By the time the squad got here he was fine and they were able to take their time getting him into the ambulance. Scary.

Next To Me

I've been meaning to write about this lady for a while. She comes in a little after me every morning. She seems like a normal 40ish woman. But it's what she watches on TV that's got me thinking...She watches cartoons. And it's not like she turns them on and then falls asleep. She watches Arthur, Martha Speaks, SpongeBob, and other cartoons that Alli watches. I'm not judging, but...okay, I'm judging. I don't get it.

Sunday, January 2, 2011

Still Nothing

Now I'm starting to get nervous. Tomorrow will be 4 weeks since we started the testing. I'm sure they didn't work on Friday and Saturday, so I shouldn't get all worked up. But part of me is thinking they have bad news and they are afraid to call us. I'm sure they have no emotions about it either way and that can't be the reason they aren't calling. We'll just keep waiting and calling.

I felt like I drank alot of water and pop this weekend with the holiday. But my weight was good. My stomach is still feeling a little bad, so I guess that's why.

Slow Day, I Guess

I supposes she has nothing else to do. The nurse that put me on today is now on the computer, Googling things. Apparently the words like "BFF", "Ah-ha Moment", and "Facebook" as a verb have been banned. By who, I'm not sure. And Fargo, North Dakota is the drunkest city in America. If I lived in Fargo I'd drink, too.

It kind of reminds me of the day that Anna was born. I was in the operating room with my epidural when they told us there was an emergency and we'd have to wait a bit. So, while we waited Jason and the nurses Googled Pez Dispensers. Yep, I'm strapped down and they were trying to find which real people were made into Pez Dispensers. I was livid!

Back To School

It was a nice break, I guess. There was really only one day when we didn't have anything planned. It was Wednesday and that was the day we were sick. So it was busy. I'm hoping going back to work won't be stressful. I need another break!