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

Friday, September 30, 2011

So Annoying

I got here this morning at 6: 20 for my blood draw. Got a danish and found a comfy seat until 8: 00 when I found some hot chocolate.

I got to the kidney doctors office at 8:30 right when the office opened. Now it's nearly 11: 00 and I am yet to see the nurse practitioner or the doctor. They are both here...I hear them ordering Chipotle right outside my door.

All I want to do is go home and lay down. I have a feeling I'm not getting much rest today.

Want to cry...

Monday, September 26, 2011

Best Day So Far

I know...from worst to best, right. We figured out why Anna wasn't sleeping. She has a cold. We set up her humidifier with some vicks. Then we gave her some tylenol and some all-natural cough medicine. It has made all the difference in the world.

I felt great all day. My bp is still low, so I'm officially off of all bp meds.

However, some of my bloodwork came back looking not so good. My white blood count was really high, so they think I have some sort of infection. I'm on a super strong antibiotic while they wait for my blood and urine cultures to come back. I could have Anna's cold brewing, or it could be a urinary tract infection.

I mean, I haven't peed in a year in a half, so I guess that wouldn't surprise me...

Keep you posted.

Friday, September 23, 2011

Worst Night Ever

I feel like maybe I've said that before. Anna wouldn't sleep. Jason got in the car and drive all of the way to Fountain Square before he finally got her to sleep. They stayed in the car for 10 minutes after they got home. He finally brought her in, kept her in her car seat and fell asleep on the couch.

I wish I could help more, but I can't pick her up for 5 more weeks. He's really stressing out...

And I felt horrible, too. My blood pressure is super low even without bp medicine. It makes me hot and cold at the same time. Sweaty and chilled as well as dizzy. Plus my pain is bad and it's hard to get comfy in bed. I need more pain pills.

I'm still loosing weight. I'm at 108. You can see my ribs.

Jason wants me to get some "weight-gainer 2000" from GNC...we'll see what the docs say.

Wednesday, September 21, 2011

Routine Hospital Visit

I'm here for my MWF blood work. I guess Wednesdays are the lightest day of the week. New people come MWF, older people only on MF and really well established people come only on M. Today they got me in before 6: 30. Now I have to wait two and a half hours until the kidney docs office opens.

They should really have beds here for us...

I get my last iv infusion today. It took for hours on Monday. hopefully we'll start earlier today. The visit with the docs took two hours since it was my very first one.

At the end of the day, Dad was waiting for me with a Snickers bar. Yum!

Monday, September 19, 2011

Things Look Amazing

Okay, blood pressure has improved. It's still low for me, but they think out could be a sign that it's going back to normal. Can you believe it? Not I! Meanwhile, we adjusted my meds and I will only take some of them if my pressure is above a certain number.

Self-medicating...I'm good at that!

My other numbers are great. Phosophorus is super low so more dairy, chocolate , nuts and cola. It's strange to go over board on the things I've been avoiding for so long.

Soccer parent is bringing us dinner tonight...stuffed shells, salad, bread and cake. Yummo! I'm hungry!

Waiting Game

Sitting in the doctors office. I was discharged on Saturday and their voicemail was down. So we are waiting for another report from the hospital.

My blood pressure had been around 88/72. Not real good. In fact, I feel like crap. So they brought me back to let me lay down. I think that and the salty peanut butter crackers and bottle of water are helping.

After this I go upstairs to get another anti rejection treatment. It takes 4 to 6 hours. So the longer I wait here the longer it takes up there.


Friday, September 16, 2011

Ohhs, The Fluids!

They want me to drink 3 liters of fluid a day. Plus, I'm on iv fluids. I'm peeing every 20 minutes. I have to unplug myself and roll my iv in to the bathroom with me. How annoying! But I guess it's better than the alternative.

I took a sleeping pill last night with my pain pill. I slept from 10 pm til 530 am. Pretty good for the hospital. I asked for another one for tonight.

Walking...In Pain

I felt better yesterday so I walked around alot. But this morning I'm in a bit more pain. And I'm peeing alot. It's kind of freaking out the nurses. They have to empty my catheter bag more than a normal transplant. Debby gave me a good kidney!

I washed my hair in the sink last night and changed into my own pajamas. It feels nice to be clean. I still might be here until Sunday instead of Saturday. I'm at a high risk for rejection because of the sjogrens syndrome, so I need an extra dose of an immunosuppressive drug. It's an iv drug and has to be done inpatient.

I've got an iv in my right arm, a central line in mt neck and a folly catheter too catch my pee.

It's hard to get around...

Thursday, September 15, 2011


Jason made fun if me. I ordered rice krispies,a banana, two milks, orange juice, an english muffin with cream cheese, turkey sausage and hash brown potatoes. Yummy! And I ate most of it, too! Lunch wasn't as good, but there was chocolate ice cream!

Wednesday, September 14, 2011


I had a great dinner and dessert. Then I ate an entire Snickers bar! Yummy! I'm not used to drinking so much and feeling like I have to peep. It's kinda nice, but kinda weird, too. My pee had been pink, like pink lemonade. But it's starting to yellow out.

I'm off off the morphine pump and now on pain pills. Hoping to get some more benedryl to help me sleep. They will wake me up every hour to drain my pee. And I'll be up at 5 am to sit in a chair for a few hours. Might even walk around before I'm moved to a regular room.

Oh, and then there is breakfast...

Super Duper

I feel great! Of course my side hurts, but other than that I'm doing really well. I had some frozen lemonade and it was delicious. It set well in my stomach so they let me order a real dinner: penne pasta, dinner roll, green beans, cheesecake and chocolate icecream. And a PEPSI. Yummy-o!

Debby, my donor came down to see me. She looks great. She said her right side hurts...but they took her left kidney! She's so excited that it is working. That was her biggest fear.

I had a fever this morning. 103° F. We got it back down to normal, so I will probably move to a regular room, out of the ICU. Debby gets to go home tomorrow!

Yeah, Debby!

Still Good

I've learned that it's hard to get good sleep in the hospital. It's okay, though. I'm still feeling good! They increased my pain meds and promised I can have some clear liquids tomorrow.


Tuesday, September 13, 2011

Hard to Believe

I feel awesome. They weren't kidding when they said i'd feel better immediately. I'm in pain, but otherwise great!

So far all of the prayers are working! Love.

On The Way

In the car. Ready to get started after a terrible night. I slept for 45 minutes. Looking forward to getting some sleep.

Better, But Still Awake

Finally! I feel much better now. I took my morning meds about an hour ago. I usually take them around 6 am. I figure they can always give me something if my blood pressure is high when I get there...

I've Never Felt This Terrible

Seriously. They told me to hold some of my blood pressure medicines. Now I have the worst headache of all times. I've been throwing up since 11: 30.

Please, God. Help me make it until the surgery.

Monday, September 12, 2011

Last Day of Dialysis

I can't believe today is my last. I think the last three hours are going to drag.

In every class today someone asked of I'm nervous. It's crazy, but I'm not nervous at all! I'm ready to start feeling better. I'm not really sure what feeling good feels like!

Most people have read the article from Sunday's paper. Now channel 5 is doing a piece. Channel 5, six o'clock tonight, on the website, and all weekend long.

Our gal Val...

Friday, September 9, 2011

More About Yesterday

I got one call around lunchtime. It was from the pharmasists at Christ. There was something in the blood work they drew that made them think I needed to stop the drug for the study. My immune system is always hyped up because of the autoimmune disease, and I think that's what they saw. So, I will have a better change of not rejecting the kidney if they go with normal proceedure of drugs. I'll get IV medicine to induce my immune system to stop working on the day of the surgery.

It's fine, though. Taking the meds that I did won't hurt anything. It just isn't going to work enough. The IV meds will work better.

Then another call came right after lunch. It was the transplant coordinator and she said that my nephrologist wanted me to see my cardiologist ASAP. I was freaked out. Apparently there was something wrong with my chest x-ray.

Are you kidding??

She said that my heart just looks big because I'm so small right now. So, I had to go get an echo at Good Sam yesterday afternoon. But, good news is that the results were perfect...better than they have been since Anna was born. Hallelujah!

I had to drive the results from the echo and films from a chest x-ray up to Christ right after that. The coordinator wasn't there, so I left them for her to look at this morning. And, thank God, she called at 8:30 am to tell me that the doctors all looked at the results and are thrilled and ready to go on Tuesday.

I've about had it with all of this...Tuesdsay can't come quick enough.


Our picture is on the top of the front page today. The column will run on Sunday, September 11. It will be on the front page of the Metro section.

Lots of running around yesterday. They needed me to get an Echo and bring chest x-ray films up to Christ.

Everything is fine...all has been reviewed and we're still set to go on the 13th!

Friday, September 2, 2011

New Medicines

I went to Christ yesterday to talk about my medicines. They actually told me that I qualify to be part of a study. Here's how I understand it.

There are two different kinds of immunosuppresant drugs: induction and maintenance. The induction drugs "induce" your immune system sto stop working. The induction drugs are given through an IV in the operating room and then 4 more times every other day.
Once your immune system has been suppressed then the maintenance drugs take over and I take those forever.

But there is one maintenance drug that they think I can start two weeks before the surgery (yesterday-ish) and then I won't need as much of the induction drug. So I started taking this medicine yesterday and will continue it until the day of the surgery. They will still draw blood to decide if it's working like they thought it would. And if it doesn't seem to be working then they will just give me the regular doses of the induction drugs.

Yucky Arm

My fistula is gross. If you've seen it lately you'd agree...although you wouldn't say anything because you're too nice! And many of you have asked if they will "take it out" after the transplant. The answer is no, they won't. BUT, one of the nurses told me today that it should shrink after not being used. It will take a while, but it will go down, and I'm so excited!!

Thursday, September 1, 2011

No Blood Group

Okay, Hoxworth doesn't encourage directed donation of blood. It takes too long to get it cleaned and all that stuff. But you can still give because it will replenish what I use.