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

Monday, May 31, 2010

Dialysis Day 13

Memorial Day.

Bridget sent me the name of an organization called LifeCenter. It's mission is "To save, enhance and change lives through organ and tissue donation." They seem like a great organization and were able to help Bridget's family when her brother received a liver transplant several years ago. Go to www.lifepassiton.org and read up.

Feeling pretty good today...a little loopy cause I told a Vicodin to help with the pain from the surgery. It hurts more today than it did the day it was done. I guess that's normal. I walked around St. Dominic's festival all afternoon yesterday with my arm hanging down at my side, so that couldn't have helped. The dressing comes off today. I'm sure it'll look nasty for a while.

The strangest part of the surgery is that you can feel my blood "whooshing" through my vein on my arm. Most people think it's gross, but Alli thinks it's cool! She asked, "Can I feel it any time I want?" My response: "Sure, weird-o." And every once in a while she just comes over to feel my arm. She's Jason's kid when she does weird stuff like this.

Saturday, May 29, 2010

Dialysis Day 12

Surgery was a piece of cake! My arm looks terrible, a little scary for Alli, but it feels fine. The only issue we had was the time of the surgery. I was supposed to go in at 2:00 and didn't go in until 4:30. So, it was a later night than I thought. I couldn't eat until it was all over, so Dad brought me to Arby's afterwards and I ate like a champ!

Every time the phone rings there's more to worry about.

When I was in the pre-surgery room getting dressed my OB called. I tested positive for two antibodies that they check for in women with Sjogren's. It's okay for me, but may lead to a problem with the baby. The problem is a heart block which is an issue with the heart's electrical system. It controls the rhythm and rate of the heart. So, I have another weekly appointment to attend. This one's at Children's hospital and all they will be doing is monitoring the baby's heart beat. They will be able to tell if her heart is trending toward the heart block. It's not a big deal, but it just adds to stress of doctors appointments. Two weeks in and I'm already tired of seeing new doctors.

Yesterday after dialysis I accidentally got on a different elevator...and ended up right by my car in the parking lot! It was a miracle! I'm excited to have found a short cut.

Not alot going on today. Jason rented a movie for me to watch, "It's Complicated." Maybe I'll write a review on Monday.

Friday, May 28, 2010

Dialysis Day 11

Surgery today. It'll be fine.

I went in to work yesterday. I didn't do anything physical, just graded some papers. It was a really good day. I felt fine when I left, even felt like making dinner last night. We had a game night last night, too. We did a puzzle and played Pretty Pretty Princess. I won.

I go in to get my fistula today. Surgery is at 1:00, so they are taking me off dialysis a little early. It's supposed to be no big deal, but I'm sure it will hurt a bit. I hope they have some pain meds that I can take that won't harm the baby.

The lady across the way was sick this morning. And she's a loud puker! I'm glad I had already put in my headphones and started to listen to the Today Show.

There's some confusion about how far along I am. If I'll be 24 weeks when we're on vacation then I have to have dialysis at a hospital unit. But I swear I'll only be 22 weeks, so it should be easier. They're going to call my OB to check it out.

They are supposed to take some labs today to see if my phosphorus is still low. I hope the two bowls of sherbert and glass of milk I had last night will help things. Potassium is still low, but has been most of my adult life. I'm not a big fan of bananas, but that's okay cause they are still telling me to stay away from those. Maybe I can have a baked potato soon!

Wednesday, May 26, 2010

Dialysis day 10

Diet? Screw it!

From day one the doctors told me "Low Sodium, Low Potassium, Low Phosphorus." And so I tried my best to stick to it. And then the labs returned...guess what! My potassium levels are low. And, hey, my phosphorus is low. Both are so low that they are now having a hard time getting them up to the normal level. I was told to "Go home and eat some cheese! Lots of cheese!" Yes, sir! Cheese, milk and ice cream for me. They check all of these levels every week, so if I'm overdoing it then we'll adjust again...but diets are stupid. I'm eating what I want!

The good thing is that I want to eat everything. Finally, after months of puking after (and sometimes before) every meal, my appetite is back with a vengeance. My current craving is Nacho Cheese Doritos and lemonade. I guess I wasn't supposed to have morning sickness for four months, huh? It seems that all of the nausea was kidney related and not baby related. I'm hoping to start gaining some weight soon.

But, weight is something that they take seriously in dialysis. I currently weigh 63.5 kgs and they make sure that when I leave a treatment I'm exactly that same weight. This is normal for most patients but, of course, I'm and exception. So, the conversation between the nephrologist and OB has begun as to how much weight they want me to gain. Most pregnant women at 20 weeks have gained 5 pounds by now. I'm still in the negative...I think I've lost about 5 pounds since February.

Speaking of OB, we had an appointment yesterday and heard the baby's heartbeat again. Sounds good and I'm measuring just about right. That's all good news. We'll be visiting the OB once every two weeks with an ultra sound every 2 to 4 weeks. (Guess this really is a high-risk pregnancy, huh?) I'm going to have to start checking my blood sugar before meals soon because of the steroid I'm taking. Prednisone can raise your blood sugar. I'm also going to start taking blood pressure medicine. My pressure is high after treatments, but that's expected because it is kind of a stress on the body. It's hard for me be be live because for my entire life my blood pressure has been very low.

So, we all know that I'm a planner...but these past few weeks have been crazy! I know that Jason has done most of the scheduling, but now that I'm feeling better I'm taking some of that on myself. And it's HARD! I usually try to do all of my scheduling in my head without a calendar, but now when I close my eyes to visualize the week all I see is a spider web, a giant mess! I'll rest easier when I find a way to organize my life a bit better.

Monday, May 24, 2010

Dialysis Day 8

Is it really possible to feel this good?

I'm still having a hard time believing that I felt so bad before. I feel like I could climb a mountain! Of course, there's no reason to think the rest of my life is going to be a walk in the park. I'm here 5 days a week until the baby is born and then 3 days a week after that until I get a transplant. But today has been a really good day for me!

Doctor came in to dialysis around 2:00. He was in a good mood! He was singing a song that he swears is from South Pacific. I sang a medley from South Pacific in high school and have the memory of an elephant and I had no idea what he was singing.

Good news! My blood levels are looking good and I get to stop taking one of my medications. My phosphorus levels are low which means I can stop taking the binder and can drink more milk and eat more cheese! These levels are monitored daily, so if they fluctuate I'll be back on the meds and watching my diet again soon.

When I was hospitalized he was worried about the amount of acid in my blood. But today...today he used the word "normal" do describe the acid. I couldn't tell you the last time a doctor used the word "normal" to describe me!

Another bright spot: There is no reason that I can't go on vacation! The hospital is going to work on setting up my dialysis while we're in Florida. He did say that were are kind of doing this at the last minute and if they can't get me in 4 or 5 days then it's not worth the trip. I know every one's already praying for us, but an extra prayer about our trip to Sarasota would be greatly appreciated! We could use a vacation.

Nothing too exciting going on here in dialysis today. Only three other people in the POD with me. Two are sleeping and one is trying to figure out what happened on Lost last night. I suppose that might take her 4 hours to figure out.