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

Saturday, October 30, 2010

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.

Thursday, October 28, 2010

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.

Tuesday, October 26, 2010


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.

Saturday, October 23, 2010

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.

Thursday, October 21, 2010

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.


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.

Tuesday, October 19, 2010


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."

Saturday, October 16, 2010

Officially +1

Yesterday was October 15th...my official due date. So, Anna is officially +1 day old. I can't believe it's been 9 weeks. It really does feel like an eternity. And we are so pleased with how she's doing.

I was thinking the other day about how busy I used to be with medical appointments. I would sometimes have 3 appointments in one day. Things haves settled down a bit, but I still have lots of appointments. On Monday I will have tissue typing and vaccines, Tuesday is dialysis, Wednesday I'm with the cardiologist, Thursday dialysis, and Friday to Children's to have Anna's eyes checked again, and dialysis on Saturday. It would be nice to be able to sleep past 6:30.

Thursday, October 14, 2010

One Last Test

I called last night to make an appointment for my last transplant work-up test. This is for tissue typing and vaccines. I'm pretty sure that the tissue typing is just more blood work. I'll get a flu and pneumonia vaccine since I'll be more susceptible to infection after the surgery. Then we'll meet with the surgeon and hopefully get me put on the donor list. That way if we can't find our own donor then maybe we'll be lucky enough to find a match that way.

Anna's Check-up

I thought she was about 7 1/2 pounds. But, how about 8 pounds! Yup, 8 pounds! I couldn't believe it. She's at about the 50th percentile for weight and a little under that for length. She's growing, and we're excited.

Dialysis Update

I'm only gaining about 1.5 kilos between treatments which is nothing compared to others. The nurses and techs are still surprised that I run for 4 1/4 hours. I only weigh 130 pounds...there's nothing to me! But the doctor explained that he wants the blood flow to be 450 for a couple of weeks before he'll reduce my time. Today the flow rate is 250, so I think I've got a way to go. Apparently they can only go to 300 with the size needle they're currently using. I hope they'll start with a larger one soon. I really want this catheter out of my shoulder and we can't do that until the fistula is all of the way ready. Soon...

When I started coming only 3 days a week I was having some rough afternoons. I was tired, run-down, and I would need a long nap to recover. I'm getting used to it now. Although I had the worst headache after treatment on Tuesday. I'm sure it was because I was dehydrated. Guess that means I should drink more...yeah. I drank alot of water yesterday and my weight was good.

I did get a report on my labs this week. My protein level is finally increasing and is actually considered "normal." I'm no longer malnourished. My calcium and potassium are "normal", but my phosphorus is still really high. Really high. I'm still drinking too much milk. Who would have thought that milk would some day be bad for me? I crave milk during and after pregnancies. I hope I can make myself slow down. Having high phosphorus is not good. I would run the risk of bone damage and constant itching. Yuck.

Tuesday, October 12, 2010

I Believe It

Jason came home from school yesterday with an envelope full of gift cards. Most were from restaurants, but some are from Target, WalMart, and gas stations. They were all purchased with staff donations. At first I thought, "I can't believe it!" But the more I think about it, I believe it. I work with an amazing group of people. We take care of each other and that's obvious. They started collecting on Friday and were able to give us more than $400. Amazing! I'd love to be able to thank everyone individually, but most of the donations were made anonymously.

I wrote more...twice, but it keeps disappearing. It's hard to type with one hand, so check back later after I take a break.

Saturday, October 9, 2010


I work with some amazing, caring people. I'm still getting offers from co-workers who want to be tested. We received a restaurant gift card from someone I don't even know. We were also given some coupons for formula from a student.

With all that has gone wrong for us in the past few months there are times like these when I still feel lucky. I'm lucky that there are so many people who are willing to help. I'm lucky to have family members who will do ANYTHING I need and offer to do so before I even have to ask. I'm lucky to have friends who call just to check in. I'm lucky that I have two beautiful girls who are healthy and make me smile when I'm having a rough day. I'm lucky to have a husband who still sees what's right with me even when all I see is what's wrong.

I really am lucky.

Thursday, October 7, 2010

Two Needles

My fistula continues to improve, I guess. We've started using two needles today. That's a big step. The pressure is still high but the nurse practitioner said it's going to be okay. We've just got to use it for a while till it opens up a bit. We'll see what happens.

I went in yesterday to have some blood work done for my transplant work-up. I had to give a urine sample, too. I was only able to produce a drop...literally, a drop. The tech was so confused. I told her that's all I could do and she offered to get me a glass of water. "No, really! That's all I can do. A drink won't help." She said maybe we should do a 24-hour collection. "Uh, that's still all you'll get!" I guess the pre-surgery techs aren't real versed on the nonfunctional kidney.

I have one more test to do before we will meet with the surgeon. Once he decides we're ready to go then they will take my info to "the committee" and get me on the official donor list. It kind of scares me because I'm sort of "on-call" at all times. I could get a call at any moment that a kidney becomes available. Then we'd rush to the hospital and start surgery. I would hope I'd be able to see Alli before I go.

I continue to get offers from co-workers who want to be tested. They are still people I don't know very well. Amazing. There are lots of caring people out there.

Tuesday, October 5, 2010

Prayers Are Being Answered

My co-worker sent an email to the entire staff about being a donor. I didn't think I'd get responses so quickly! Three people sent me emails within a couple hours of receiving the original message. They want to be tested! A couple of them I don't know well at all. I can't believe it!

Also, a friend of mine from high school has already sent her paperwork in. And, my mom used to work with a lady whose daughter I went to high school with. This wonderful lady also wants to be tested and has been asking the nuns she works with to pray that we will be a match.

I was so down just last week when I heard the my mom and brother won't match. But it looks like my prayers are being answered. I'm getting some blood and urine tests tomorrow so we'll be another step closer. I just need to have my dentist fill out a paper saying that I don't have an infection since I'll be on immunosupressant drugs after the surgery. Then if we find a potential match the two of us will get one more blood test.

One of the nurses suggested that I get on the transplant list soon, before the holidays. Sad to say, but there are lots of drinking and driving fatalities in November and December. Of course, I would never wish that on someone, but...

Thank you, everyone!

Saturday, October 2, 2010

Yesterday Was Good

I brought Anna to Children's yesterday to get her eyes checked. The nurse put dilating drops in her eyes and then sent us out to the waiting room to wait for them to take affect. After about 30 minutes we returned to the room for the exam. The exam was heartbreaking. We swaddled her in a blanket and then the doctor used these medal wires to hold her eyelids open while he shined a bright light in them. Anna was a mess. She screamed as loud as I've ever heard her scream. She was as red as a lobster! The exam only lasted a minute, but I hated it! The results were good, though. Anna's retinas are slightly immature. This is kind of to be expected since she's not even supposed to be born yet. We go back to do it again in 3 weeks.

After the appointment, Anna and I went up to school to visit. It was great to see everyone and they were all so supportive. Some even asked how they can get tested to be donors. Since I haven't heard from anyone reading the blog about donating, it was great to hear. I'm going to send the paperwork to my principal since he was one person who asked how to be tested. Another teacher asked if she could send an email to the staff about becoming a donor. I feel a little guilty asking them myself, but I think I would like her to send it out. We'd be happy to find a living donor. Remember, living donors take better than cadaver donors. So I won't be on "a list" until we exhaust other options.