Friday, October 31, 2008
Thursday, October 30, 2008
My good friend Nina Feinzig passed away today. I never got to meet her in person; only through an online CF forum. It is like that with so many of my CF friends. Nina was such a sweet person... always caring about others more than herself. She will be greatly missed. Thanks everyone for keeping her in your prayers. Cystic Fibrosis has taken the life of so many of my friends. It's a very depressing day.
As Casey said in a recent paper she wrote, CF may not be as common as breast cancer and other diseases, but it sure is devastating for the families and loved ones of those affected by it. I know of no other disease that involves so many body systems and so many problems. I do hope there is a cure one day.
Until Casey's 13th birthday. Enjoy 20 days of pictures of Casey through the years.
Here are today's...
Wednesday, October 29, 2008
I got home about 8:30. Duke was really on the ball this time getting an extra staff member on the floor for my desensitization, and getting me out of there. I'm so glad that I had such a short stay.
Jason called the insurance company today to see what they would pay regarding my kidney transplant. I knew that we wouldn't have to pay much, but he wanted an exact number (my surgery alone is about $90,000, but much less than my lung transplant). We only have to pay about $150. I can't believe it. They are also going to pay for most of our hotel room costs (we'll need a hotel room a couple of nights), and our transportation costs. Jason will not have quite the benefits he has now come January, so my transplant coming sooner than expected is really a blessing.
Please pray for my friend Nina who is on a ventilator in Arizona and not doing well at all. I'm so sad for her.
I'm waiting to see if they are going to let me out of Club Med today. My doc's have yet to make rounds.. into my room at least. My blood sugars and blood pressure have both been high, so I'm hoping they will just let me manage this at home, and not make me stay.
I'll keep you updated.
Until Casey Maine is 13 years old. I'm doing 20 days of pics to celebrate her birthday.
Me and my dog Newt!
Introducing my cousin... Caroline!
Tuesday, October 28, 2008
Until November 6th, my Casey's 13th birthday.
Enjoy today's countdown pics...
Casey was 3 in all of these photos...
They are getting ready to start my desensitization. It will take about 5 hours. They start infusing a bag of saline with a tiny amount of antibiotic in it. They change bags every 15 minutes and increase the amount of antibiotic in each bag, until you are getting a full dose after about 5 hours. Sometimes I have minor reactions during that time, but I have never had any major reaction. I should be discharged tomorrow if everything goes well with the desensitization.
I just had a wonderful surprise visit from Nate, Tricia and baby Gwyneth. It was so good seeing them. Tricia is getting her biopsy done tomorrow to determine the next course of treatment for her lymphoma. She looked absolutely gorgeous!!!!!! Gwyneth is so active, and I could really see a lot of Tricia in her. Please keep Tricia in your prayers.
My new blog design should be coming by the end of the week. *Yay* I'm so glad to get rid of this boring one.
Monday, October 27, 2008
Until November 6th, Casey's 13th bday!!! Celebrating with 20 days of pics of her through the years!
I'm wild and I'm free.. and I need help with these buttons, Mom!
Yes, I did get SOME in my mouth!
I loved my Winnie the Pooh cake on my 2nd birthday!
Why give me paper?
Shouldn't I be in a Fisher Price commericial?
I've got a little more packing to do before going to bed. I don't know how long I will be at Duke, but will pack for a week just in case. I am hoping to be out by Wednesday.
They will admit me tomorrow (oops, I guess I mean today, since it's after midnight) after I have my pre-op appointment. They will probably do the desensitization on Tuesday to the IV antibiotics. I'll then be home on them until time for transplant. Wow.. that's 2 weeks away.
Anyway, I'll update this evening in the hospital.
Sunday, October 26, 2008
Until Casey is 13 years old. I am doing 20 day of pictures of Casey through the years.
I was a very smart toddler.
Mom, do not take another picture of me on the potty!
This face was cute when I was little!
And this sofa can be your's.. if the price is right!