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

Thursday, March 31, 2011

The Blind Leading the Blind

Today both of the blind patients were dropped off at the same time, and left outside the front door. The door was locked so the driver just left them there. Nice.

Then, the one new nurse that I think I've blogged about before, started to walk one of them to his chair. BUT, he picked the wrong blind guy and took him to the wrong chair. No big deal, right? Wrong! We reuse our filters, so he could have been hooked up to someone elses machine and used someone elses filter! Could you imagine?!

And, finally, when I left the building today the driver had parked his big bus in front of my car so I couldn't get out. I'm starting to get really upset about it, too. Ugh.

Tuesday, March 29, 2011

The Better Match

So, I just got an email from the girl from high school. She's the better match! They also called my friend that I work with and said that she's still a possiblity, but she'll be my backup. This might really happen!

I will have less say in when we do the surgery now that the donor is not a teacher. But, hell, I don't care when we do it! It's totally her call.

Saturday, March 26, 2011


I almost got in a fight with a driver today. He's a driver from a private company that drives one of the blind dialysis patients. He drives a small bus and instead of parking in one of the three handicapped parking places he parked in all three! So, I just parked in the first available regular spot and there was plenty of room for him to get out. He came out wagging his finger at me and telling me that I needed to move.
"No, no. You realize that you're the one in the wrong, right?" I asked.
"The man is blind!" he responded.
"Yes," I said, "but you're not. Pick one parking spot next time."

Disprespectful. Why can't everyone think of other people before they do things?

Friday, March 25, 2011

Don't Get Your Hopes Up, Kid

I got a text from Martha yesterday. A girl I went to high school with got tested without telling me. And she's a match. I seriously haven't seen her since graduation. I can't believe it.

And the lady from work who got tested told me today that she's a match, too! They are going to Christ on Tuesday to see who is a better match. Then they'll continue the testing that Jason went through.

When the Reds went to the World Series in 1990, all my dad could say to me was, "Don't get your hopes up, kid." Heh...

Thursday, March 24, 2011

The Meeting

I know surgeons are busy, but a meeting set for 1:00 shouldn't begin at 2:15 and last only 5 minutes...

Anyway, it was a good meeting. On Tuesday of next week my files will be brought to the kidney transplant forum. That's a group of all of the kidney doctors at Christ. They will look over my information and then decide to put my name on the list. They say there is NO reason why they wouldn't approve it. Yes!

They are reluctant to put you on the list if you haven't tried to find your own donor. But she told me that she has had to rule out 16 people who want to give me a kidney. Sixteen people! I think I know of 7 people. If you sent in paperwork, Thank you!

So, the list doesn't work the way I thought. There are 241 people on the list for a kidney in the region. But I'm not "on the bottom." If they find a kidney that's a perfect match for me, then I get it. It could be 10 years or 10 minutes. I could get a call any time after Tuesday. I will have to get a new phone, though. We currently have Cincinnati Bell and the service is terrible. We don't get service at home or in many places at school. I hear Verizon is good...and I need my phone to be working all the time just in case I get THE CALL.

Tuesday, March 22, 2011

Bad Sleep

Not sure what it was last night, but I kept waking myself up snoring. I know I snore, but it usually means I'm sleeping sound. I guess it could have been my sinuses, so I took some sinus medicine. That was midnight. Didn't get back to sleep. My sinuses were better!

We meet with the surgeon today. I asked Jason to come with me. Hopefully we'll leave today knowing that we're moving forward in one direction. Still waiting on word about the other possible match.


Saturday, March 19, 2011

Protein Powder

My protein level is low and has been since I was pregnant. I don't eat enough meat and I'm not allowed to eat beans or nuts because of the phosphorus. So I bought some protein powder the other day. I can't have chocolate so I bought vanilla. It is TERRIBLE! I've been drinking it when I take my pills since I have to chug it anyway. Ugh. I'm going to try to mix it in a cold coffee drink. We'll see.

Still no word on a possible match. Should be hearing soon. And Tuesday I meet with the surgeon to officially get me on the cadaver list. It could take a while, like years, to get a call that they've found me a kidney. But, it could be quick too. You never know.

Can you imaging getting THAT phone call?

Thursday, March 17, 2011


Okay, so there's this lady who comes in every day in a Buick and has the music turned up so loud. It's terrible and the language is terrible and it just makes me mad. But this week I've noticed that EVERY time I look at her she's picking her nose. Ugh! She's so gross.

Tuesday, March 15, 2011


That's one way to keep others from waking me up. I haven't tried headphones in a while because when I first started here they didn't work for some reason. Git a set today that work and I'm ready for a good nap!

Anna has spent the past four nights sleeping in her bed instead of in our room. And the past two mornings when we left the house she was still asleep. Once we get her in there and settled down (around 8:30) she doesn't wake up until morning. Alli was a good sleeper, too. Guess we're lucky.

Saturday, March 12, 2011

Shut It!

I'm starting to get annoyed my Ms. T. Everyday we're here she tells me how the cost of her medications have gone up. That's after she asks me if I've ever heard of cancer of the sinuses. That's how her husband "recently" died...in 1981.

But she's not as annoying as the LOUD lady two away from me. She never shuts up. And nobody listens to her! She's just yelling at the TV or something. And if she calls someone one her cell phone she's even louder. She comes in after I do, so I try to get to sleep before she comes in. But she ALWAYS wakes me up. I think that is so disrespectful.

Thursday, March 10, 2011

Settling Down

My blood pressure has settled down since the weekend. I've been taking my blood pressure before I decide if I need to take a pill or not. I'm an expert at self-medication.

I think I'm having a Sjogren's flare. I had some itchy spots on my face and I felt tired and achy. I took some more of my steroid to counter act the symptoms. Queen of self-medication.

Tuesday, March 8, 2011

Oh, What a Weekend

I dialyzed on Friday evening and Saturday morning. Yikes! But on Friday my blood pressure was out of control...223 over something not good. So, the doctor on call decided to have me increase one of my meds. I was taking 1 pill twice a day. He wanted me to take 2 pills three times a day. Okay.

It worked, I guess. My pressure came down. It really came down. At one point it was 75/53. Not good. And if you've ever had your blood pressure drop like that, I'm sorry. It's the worst feeling in the world. I woke up at 4 am on Sunday sweating, freezing, cramping, achy...misserable. I took some ibuprofen, put on a sweatshirt, and Jason got me two extra blankets. It wasn't until I raised my feet that I felt the blood start rushing back to my heart and I felt better.

From then on I've been taking my blood pressure and medicating accordingly. It hasn't been that high, so I om only taking one of those pills 2 or 3 times a day. I'll be talking to a doctor today.

Friday, March 4, 2011

No Hot Water, No Dialysis

They tried to get me on in Western Hills and in White Oak yesterday since the hot water heater was broken. But, no such luck. I didn't get on at all yesterday. But I'm on now.

I gained alot since its a day longer than usual. I gained 3.6 kilos. And I gain it all in my face...so it's HUGE! They won't get all of the weight off today, but that's okay. I'm coming back for my regular treatment tomorrow morning. Yep, I'm done here at 7:00 pm and I'm back again at 6:00 am. But at least I'll be clean, right? I'm thinking I should be able to have a malt tonight since it'll just come off tomorrow. I'm not sure the nurses would agree with my reasoning.

UDF is calling my name!

Thursday, March 3, 2011


We're in the lobby of DaVita. Something's wrong with the water heat or something. They need warm water to make the bicarbonate. Without bicarbonate we'll get sick. So, we're waiting for the water to heat up and we're getting on really late. They said we can decide to stay on the whole time or get off at our regular time. I'll have to get off at the regular time so I can get to work.

Food, Glorious Food

While we're waiting, we're talking about food that we miss. It's making me hungry...and making me want a big glass of milk. The rest of the stuff they're talking about I can do without. But the milk is what I miss. And I've been really good about it lately...my phosphorus level was finally "good." Not just "better," it was GOOD! How about that?

Tuesday, March 1, 2011


What is normal? Nothing in my life has been normal lately. But, apparently my foot x-ray is normal. That must mean I have "the gout." Heh heh. How many 33-year-old women do you know with gout? How many 33-year-olds do you know with kidney disease? Lord.

Party Time, Excellent

Alli turned 6 yesterday. Six years since my life changed...for the better. We had a party for her on Sunday. She and her friends had a great time. I guess I had a good time, too, because I gained alot more weight than usual. I gained 3.3 kilos (7.26 lbs). I'm expecting a tough treatment today. But I finally remembered to bring a larger blanket today, so that will help. During a rough treatment my blood pressure will drop and I'll get really cold. The blanket will help.