Ready for Normalcy

What is normal? I know we all have a different normal...but I'm ready to get back to my old normal. This new normal is getting to be overwhelming. I only have dialysis this week, no other appointments, but it's still too much. I'm ready for normalcy. Plus, I have to start thinking about going back to school soon. I have less than two weeks left. Just working would be no big deal, but working and dealing with dialysis is going to be tough.

I still haven't heard directly from the social worker about Gatlinburg. The other one said she got the call several weeks ago. Not sure what she's trying to prove by not telling me. I don't like her.

Fluid Intake

I asked how much is normal to gain over a weekend. I was afraid I was gaining too much. The nurse said most people come in having gained 7 or 8 kilos. That's 15 to 18 lbs. Holy Moses! I gain 2.5 kilos at the most. Sometimes I only gain 0.5 kilos. I guess I'm doing pretty well. I might start drinking more. I'm tollerating my treatments well. The only problems we're having is with my arm. They blew it out last Saturday before they could use it. Then on Tuesday they had to take one needle out in the middle of the treatment because I kept setting off an alarm. My arm is a bruised mess.

No Appointments

We have had no appointments this week...and it has been amazing! I've been able to get Alli to school on Monday and Wednesday (and Friday, too) and come home to work around the house. Last night, that included plumbing as our kitchen faucet blew up. Have you ever had to do work under the kitchen sink? It's a tight squeeze...and very uncomfortable when water is dripping on your head! I did all of the laundry yesterday, too. I was very productive. It's nice to be able to get things done.

It's still hard to get things done on dialysis days. I'm pretty run-down in the afternoon. Plus, I don't get home till nearly 1:30 and then I get Anna from my mom and pick up Alli from school. It's no wonder I don't feel like cooking on those days. I'm so lucky to have all of the gift cards from people at work. Again, I work with some amazing people!

I'm set to go back to work the week before Thanksgiving. I'll still need to miss a couple of mornings for dialysis. They are set for that. My principal keeps telling me to "take it easy" when I come back. We'll see.

Poor Claire

There's an old lady who is usually next to me each day. She's had two hip fractures and recently came down with pneumonia. The doctors suggested she take herself off of dialysis. They can't help her anymore. Hospice is involved. Sad.

OOT

One of the social workers came over to tell me that she got a call from the unit in Gatlinburg. They were calling to tell her that they have a chair time for me over Thanksgiving. So, I get to go out of town! She told them not to give us a time unless they were 100% sure and explained the stupid Florida situation. They were very sympathetic and said I'd love it there. It's a new unit and supposed to be lovely. We'll see...but at least I get to leave town for a while. Yeah!

Did you know that pumpkin patches aren't open at night? We drove all over the place trying to find one. We ended up at Biggs. Sad, but they did have a great selection of pumpkins. Alli got to climb on bails of hay to find the perfect one. We didn't take any pictures....cause we were at Biggs. But we'll take some before and after we carve them.

I tried to prepare dinners for the week on Sunday. We've been eating out on dialysis days cause I feel crummy. I made three chicken casseroles: chicken with rice and broccoli, chicken with noodles, and chicken with tomatoes, green beans and couscous. I made them up. We'll see how they turn out. If you know any easy casserole recipes, send them to me.

Anna's Eyes

Anna's eye exam went well. She screamed more than last time. The doctor said the older they get the louder they are. Makes sense. But there is no more immaturity in her retinas. Yeah! We go back in 6 months because there is a high likelihood that preemies can be nearsighted early on. With both parents wearing glasses both of our girls will probably need them no matter what. Poor kids.

Yesterday, three people commented on how skinny I am after just having a baby. When I said that I had medical issues and didn't gain much weight they were mortified for having made the comment. Goes to show that you should hold your tong because you never know some one's situation.

Cardiology Update

I saw the cardiologist again yesterday. It's the first time since Anna was born. Not to scare anyone, but in August the words "congestive heart failure" were used. I know. But things are looking much better now. There is a certain flow rate that is normal between 50 and 55%. In August mine was 38% and now it's 44%. It's improving. And the doctor said if we can get my blood pressure down then it will get even better. So we're raising my dose of blood pressure medicine. And she says that if my kidneys were okay then my heart would be fine. So if I get a kidney then it'll get better.

Anna's Eyes

Tomorrow we get Anna's eyes checked again. I hated it last time. They'll dilate her eyes and then use the metal wires to hold them open to examine them. She screamed and I wanted to cry. Anna's more alert now so it might be worse this time. We'll see.

Pumpkins

I have dialysis on Saturday and Jason has CPR training, but after that we're going to get pumpkins for the family. We love going to Turpin Farms. Alli's really excited.

Amazing!

I grew up with a girl whose brother had a liver transplant several years ago. Their family was helped out by an organization call The Life Center. Scott passed away about a year ago and the family decided to do a fund raiser this summer in his honor. I was shocked yesterday when I found a card in the mail that included a check for $1,000. We are so grateful. Since Jason is student teaching we'll be able to use this money to make a mortgage payment.

I don't think I realized how many special relationships I've made in my life. It really is sad that it took all this for me to see it.

Last Tests

I had my last test for my transplant work-up yesterday. There were two skin tests and several tubes of blood were drawn. I also got a flu and pneumonia vaccine. The blood work will take three weeks and then we will meet with the surgeon. If I don't have a donor by then, then they will place me on the donor list.

In then beginning I was really nervous about having a transplant. Now I'm just anxious to get it done. I had a dream last night that I had it done and it went well. I remember hearing "we have pee!" Apparently that's a good thing to hear when you're on the table.

I can't wait until "we have pee."