Wednesday, November 19, 2008

Help! I am stuck in a rut!

I am so bored. I haven't blogged because I have nothing to write about. No transplant news. No new fundraising news. No life news.

I am so tired of being home all the time. I feel like I am a prisoner of my home and my dogs are my prison guards.

I need some excitement. I keep asking myself is my life the way it is because I am just afraid to live life because I am afraid to get more sick. I read about so many other people with cystic fibrosis doing things. Every time I do something I get sick. What is that all about? Or is my life just boring? I feel like I do nothing. I go nowhere. Has my life always been boring?

Would I be pressing my luck if I start doing the things that I love to do? Wait, I can't even tell you what I like to do. Can someone remind me what I like to do for fun? Help me!

Saturday, November 8, 2008

Decision Made

First, I want to thank everyone that has contacted me in the past few days to give me support as I have tried to make a decision about being listed and activated. I got emails, blog comments, facebook messages, myspace messages and phone calls. The input I received was very valuable to me.

I also had a great heart to heart with Brian. I plan on being listed and activated as soon as I get my dental exam. I need to call about scheduling that on Monday. As one person put it I need to have faith in the system and they are not going to give me lungs if there is someone else that needs them worse them me! That make me feel less selfish which makes is easier for me to accept my decision. I don't want to get lungs if mine are sill working okay and someone else really needs them. There is a scoring system for that reason. I have full faith that my lungs will come at the right time.

I will let everyone know when I am finally listed and activated. I am very at ease with this decision which must be a good sign. Thanks again to everyone that made this decision a little easier.


Friday, November 7, 2008

Toughest decision ever

Well, I have spoken with my CF Doctor. He really didn't say what I wanted to hear but then I should know he always tells me like it is. The decision to be listed at this point is mine to make. He is concerned that if I don't get listed and be active on the list that my next infection might be the one that puts me on a ventilator. The IV antibiotics are just not benefiting me at all. He feels I am healthy enough now to pull through the transplant but we don't know what will happen if I wait.

I think the decision is so hard because I always hope that my next hospitalization is going to make a difference. Plus, the good days that I have gives me hope that I'll have more goods than bad.

The decision is about quality of life. With new lungs, I would not be typing this with oxygen on and nebbing albuterol. I would not get out of breath while walking to the bathroom or doing laundry. My days would not be ruled by when the home health nurse can get here to pound the junk out of my lungs so I can breath for a little while.

What would happen if I waited to get listed?
I could get really sick and end up on a vent and have a much harder time recovering from a transplant.


I stay the way I am for years. I guess instead of living I would just be being. I don't feel like I living life to its fullest right now. I feel like I am just waiting for the next day to come.

Life is worth living right? So why is this decision so hard? I guess it is because of the unknown. But isn't there a lot of unknown right now?

I really wish someone could make this decision for me. This is just a little look on what is going on in my head right now!

Thursday, November 6, 2008

B&W update

I had a transplant appointment yesterday. All of my tests came out good. I am healthy enough to go forward with a double lung transplant. My case goes in front of the transplant team today to see if there is anything else they would like me to do before I can get listed. Then they are going to get pre-approval from the insurance company. They are also going to talk to my doctor today to get his opinion about me being listed. I think we will probably go ahead and list me but not activate me. That way I can try to make the most of my lungs and as soon as we feel that my lungs have ran their course then they will hit a few key strokes and activate me. Once they activate me, I need to be ready. The call can come as soon as the day they activate me. That was a big shock to Brian. Yesterday was the first time Brian had gone to Boston with me. I am so glad he did.

I am sure people are asking why wait. Brian actually asked that question. The average a person lives after a lung transplant is 5 years but they are good quality years. B&W actually have a patient that is 21 years post transplant. Of course that is what we are all hoping for. The longer we wait to get new lungs the bigger chance that there is a break through in medicine that will help people survive longer after a lung transplant. So I think we will try to get these lungs as healthy as we can so that there is hope for a medical break through before I really need lungs. My tests show that I am borderline needing lungs so the decision to be active or inactive is very tricky. We don’t want me to get to a point that I am too sick for a transplant. I am stressed about this decision. I wish we had a crystal ball to see what the future holds.

Monday, November 3, 2008

What a Day!

I am so amazed by the people I have in my life. My friends and family did an amazing job today with our first fundraiser. I think it was better than we all could have imagined. Who know you could make over $700 on a bake sale while standing in 37 degree Maine weather. Oh yeah, that doesn't count the wind chill. It was freezing. I love you all and thank you for the amazing day. Oh yeah, Can anyone tell me how this coffee works?

My next blog will be about my transplant appointment that I have on Wednesday. It sounds like we are going to make a plan of action. Wow!