Sunday, May 31, 2009

It Has Been Awhile!

I have been busy since we got back from our little vacation. (a much needed or else I was going to go crazy vacation) Nolan was in his end of the school year play that the 4K performed. He was a rock star...and quite the "star" of the show I might add. Yes, I am a proud mommy! I can't believe he will be going to kindergarten in a few short months. Gah!

My blood work has come back and my creatinine is starting to creep back up a little. It was 2.8 this last month. Up from 2.6, but better than the 3's it has been in the past year or so!

I have been working on a small personal project of mine with my family to help raise money for the costs of transplant not covered by insurance for me and my living donor. We will be selling t-shirts to help raise organ donor awareness. I will post a pic of them as soon as they are done. I am excited and many others are as well!

Now....for the best news. I have a match for a living donor. So far, everything looks good as far as the cross matching, tissue typing, etc. He has to go to MUSC June 10-11. Please pray that all his tests come back that he his as healthy as a horse. :) Also, his family has a few concerns about organ donation, please pray that they find total peace with him being my hero. They support him, but are scared for him a bit....understandably. The concerns I have heard his family express are just "myths" and I think with educating them on living donors it will calm their fears a lot.

I will announce who it is as soon as I ask him and his family if I can blog more about it...specifically more about him! I would like to tell the world who my hero is. (even if it comes back he will not be able to donate to me)

Friday, May 29, 2009

Thursday, May 21, 2009

Ode To Procrit Injections & My Kidneys

Oh procrit, you have helped me along the way,
Giving me enough energy to feel okay.
I guess you can say you have given me my life back,
even though your sting is like a bee attack!

Oh procrit, you help me make enough red blood cells,
Because my kidneys want to shut down & fail.
At times it is quite funny you see,
I have this love/hate relationship with thee!

Oh procrit, my kidneys would be lost without you,
I can't wait to get a transplant so that I may say adieu!

This Ode was brought to you by a very silly moment. I don't take responsibility for my mood swings. :) If you want serious information on what procrit injects have done for me...go here!

Tuesday, May 19, 2009


We all had a great time and I will post more later this week!

EDIT: Go to 2lilpumpkins to see a small video of our vacayion.

Wednesday, May 13, 2009

I think I have been snickered...

Yes, I have come to the conclusion that a skinny nurse has finagled with the scale I weigh in at my nephrologist's office. That piece of metal "claims" that I have gained 10 pounds the past 3 months. Gah!

I am suppose to be losing 10 pounds before transplant...not gain them. Oh and to top this all off...I was weighed right before our beach weekend. Nothing like an extra 10 pounds on this pudgy body I get to prance around in a bathing suit with hopes of not scaring everyone. Gah!

So....I am going to lose this weight as soon as I get back next Tuesday. I need one last dinner before I execute my is on death roll. (hehe get it? ya know the rolls most of us have). Ok...ok...I will see you all next week before I put another stupid line in this post.

Saturday, May 9, 2009

Fun in the Sun

Next week this time I will be giggling all the way down a water slide with my boys. Or perhaps sipping a frozen "adult" beverage while admiring the sound of the ocean. Maybe I will even be building sandcastles or collecting shells trying to see which one still holds a hermit crab. Regardless I will be the one with the SPF 50, movie-star sunglasses, and beach hat on. I can't wait.

Hubs and I were suppose to go away one night for our upcoming 9 year anniversary, instead we decided to make a long weekend of it and take the boys to the beach. We will be staying 3nights/4days at an oceanfront resort. (we got a fabulous mother-n-law would be proud)

Here are some fun in the sun precautions to take if you have an autoimmune disease or on any medication that makes you sensitive to the sun.

*Make sure you have SPF30 or above on. Bath in it. I personally like to use my kids waterproof coppertone SPF50 and it blocks dangerous UV rays.

*Wear the "Audrey Hepburn" sunglasses. Protect your eyes or you will pay for it with the burning gritty sand feeling for days.

*Limit your sun exposure. Stay in the shade when you can or stay under an umbrella. Big sun hats can help a bit.

*Drink plenty of H20...if you have an "adult" beverage be sure your medicine won't cause a bad reaction.

*Wear a good chapstick or lip gloss so that you don't end up with dry cracked lips. I love burt's bees lip shimmer. It is a great chapstick with a hint of color.

*Shower immediately after you come in or at least rinse off at those outdoor showers provided to get the salt or chlorine off of your skin.

*Moisturize your skin. I love Caren lotion. It is a hand treatment, but it works great on the rest of the body too!

Here is another blog post from my friend Julia @ Reasonably Well

What do you do to prepare for a day or weekend for fun in the sun?

Sunday, May 3, 2009

Update on my numbers..

Well, actually it is on my kidney numbers. I am not due for a huge autoimmune work up until transplant or August...whichever comes first. The cellcept was working for the 4 months in a row according to the collected data for the Sjogrens. They continued to inch down. :) Hence why no new numbers there.

Are you ready for this??? My creatinine was 2.6 a couple weeks ago!!! I went from 3.5 in Jan 2009 to 2.6 april 2009. My BUN was 38, hematacrit 32.9, hemoglobin 11.3. Not too shabby. I have a Nephrologist appointment in a couple weeks and I am going to ask that when I get my monthly labs for them to be sure to double check that creatinine. A few people seem to think it could be a lab error, but I honestly feel good the past couple weeks. I told my hubs that prior to getting the results.

I have been told that my kidneys are too far damaged to save them and that it would be only a matter of time before dialysis. This past winter was rough and I thought it was knocking on my door...but I swear I feel good. 3 weeks ago I didn't have enough energy to even read to my boys, and now I have gone without taking a nap this past weekend. Woo-hoo!

If my labs are true, I can definitely feel the difference between 3.5/3.1 to 2.6 . My mom believes it is all the prayers I have been getting. I have hundreds praying for me...perhaps over a thousand. I thank you for all the prayers and keep them coming.

Friday, May 1, 2009

I was asked to spread the word for her...

If you know someone who is interested in helping her, please contact Cindy Richards @ (205)939-6794. She is a CHILD who needs help!

13-year-old in need of kidney transplant
Published Sunday, March 29, 2009 on here

Shawl of hope: Karli Chadwick and her mom, Kellie, sit while being draped with the prayer shawl they were given from the Knit Knacks of Clanton First United Methodist Church.
Karli Chadwick is, for the most part, your typical young girl. Unfortunately right now, some of these things are on hold. For most of Karli’s life, she has been in and out of the hospital. Karli is 13 years old and in dire need of a kidney transplant.

The day before Karli was to be admitted to Children’s Hospital to have a port put in for dialysis, she and her mom met the “Knit Knacks” of Clanton First United Methodist Church. The Knit Knacks presented Karli’s mom, Kellie, with a prayer shawl and then prayed for both mother and daughter.

Christians throughout the community have been praying for Karli and her need for a kidney. If you think you might be interested in considering the possibility of being a kidney donor for Karli, you may call Children’s Hospital and talk with Transplant Coordinator Cindy Richards at (205) 939-6794.

In order to be a donor, you must be either A or O blood type, not being treated for high blood pressure, at least 18 years old, and have had no cancer for the past five years. The initial testing is very simple; you just call Children’s and tell Cindy Richards you would like to be tested for Karli Chadwick. You will be mailed a kit and can go to the local hospital for the blood work. Your blood work will be sent back, and in three weeks you will know whether or not you have passed the first screening process.

Karli’s mom, Kelly, can be reached via e-mail at

Maybe you could be the donor Karli so desperately needs.