A Place to Go

The one thing that I learned to accept is that we all need to get away from reality once and a while. So in December of 2006, Brian and I bought this little red camp on Pumpkin Pond in Eustis, ME. It does not look like much but it is a place we can go and relax. We spend a lot of time on the water while we are there. We have a small boat that we use right on the pond and a larger boat that we put on Flagstaff Lake which is 3 miles up the road. We are in the process of winterizing the camp so we can use it during the cold winter months. Last year, Brian and his buddies went up several time to ride the snow mobiles. I didn't go because it was too cold and no running water in the winter. Hopefully, that will all be changed by this winter.

It is Creeping up

I can tell that my evaluation appointment is fast approaching because I cannot shut my brain off. I lie in bed an my mind goes and goes which is the reason I am blogging at 3:30 am. I have been wide awake since 1am. I am tired but just can't sleep. It will hit me tonight when I hit the sack like a brick.

I had an eye opener today. Even though I felt good, I quickly became aware that my lungs suck! I had to go into the office to meet with some students. The weather was very damp and humid. As I walked in the building with my oxygen on, I started to cough. Of course, it took me some time to stop coughing and to catch my breath. When I arrived in my office one of my co-workers told me she was very nervous because she could tell I was struggling. I replied "that is why I need new lungs."

Most people forget that I am sick because on a good day I can hide it well and on bad days I normally stay at home so no one can see it.

Thanks for visiting.

Almost here

I cannot believe in one week I will be in Boston meeting with the transplant team at Brigham and Woman's. I am really excited for some answers.

I am tired this week. My last blood test showed that my iron was low. This is nothing new but some days it really affects me. I cannot wait for the weekend to get some good sleep. My husband and I plan on going up to our camp to do more work on it (well he does the work and I swing in the hammock).

The air here is very heavy and moist so it is hard to do any outdoor activities. I feel like a slug.
I have had my nieces here all week. The pretty much take care of themselves. I just make sure they are safe. The keep my dogs busy. By the end of the day my dogs are trying to find a quite place to get away from them. It is pretty funny.

I need to go in to work on Thursday to meet with some students. I haven't meet with live students in a long time. I do most of my work over the phone. The best part of going in on Thursday is I get lobster!

Well that is all. I hope this finds you all well.

Life Update

Well, I have been feeling really well. I am a little scared about how good I have felt. I am just waiting for things to go down hill. The only thing concerning is I have been coughing up a little bit of blood. The good thing is it is not pure bright red blood. It has been mixed with mucus. I think it is from plugs moving. I haven't had any fevers and I am not tired. Oh and last but not least, I am finally gaining weight. I am almost up to 113 pounds. That is good since in November I weighed 96 pounds.

I have been babysitting my nieces. I think it has really kept me in a positive mood. The actually energize me. I love having the here and spending time with them. For those who don't know they lived with me every weekend for almost 2 years. I miss having them here.

Well, 2 1/2 weeks before my first transplant meeting. I can't wait to have some answers.

I hope to hear from you all soon.

XOXOXOX
Stephanie

Transplant Evaluation

I got a call from my Doctor's office a few weeks ago that Brigham and Woman's was waiting for me to call them to set up an appointment for the initial evaluation visit. I cannot believe how fast this is all happening. I called them and my first appointment is July 30th. WOW!!!!

My sister, Tonya, is going to bring me to this appointment. She is a pharmacist so she has a little more medical background than I do. I am nervous but excited all at the same time.
I think the hardest thing to grasp is how fast my health declined. A year and 1/2 ago I would never of expected to be where I an today.

More to come...

Say What?

At my last doctors appointment, I figured we would just talk about how the IVs were going and then set a date to have my PICC pulled. Well, that is not how the appointment went.

Long story short my Doctor is referring me to be evaluated for a lung transplant. I knew this was coming but I thought 6 months to a year down the road. Nope! Now! My Doctor is just waiting for me to tell him what center I want to go to.

After a lot of thought, I think I will go to Brigham and Woman's in Boston. It is close and they have a lot of experience with CF lung transplants. Now, I just need to call my Doctor so he knows where to send the letter.

I guess I better get fundraising! Even though I have insurance there is still a lot of additional expenses that I will be encountering. I have no idea how much I should even shoot to raise. I guess there is no harm at raising too much money because any I don't use I will donate to either the make a wish foundation or the cystic fibrosis foundation or another worthy cause.