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.

Or

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!

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.

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!

Rock-n-Ink

That's right we have a name for the event that is taking place on December 7th.

Getting Sprung

That's right, I should be out of the hospital tomorrow. I will still need to be on IV antibiotics from home but there really is no place like home. I aced my 6 minute walk test that I needed to do for my lung transplant evaluation. I had to walk at least 1100 feet and I walked 1970 feet in 6 minutes. Oh course, I was using 3 liters of oxygen.

I think I am actually feeling better. I am able to cough stuff up.

Event update:

On Sunday December 7th, Memory Lane in Standish, ME is holding a 3 band benefit for me: Bill Lake, Strange Brew and ICGYRO. Plus Infinity tattoo will be doing tatoos starting at $30. 100% of the proceeds from the tattoos will be donated to me. The bar will open at 2pm and stay open until 1am. $3 cover 100% of the cover is being donated to my lung transplant fund. Let's kick this fundraising off right with load music and tattoos!

If you are asking what Roses have to do with Cystic Fibrosis

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.

He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.


65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.

My thoughts

I am on emotional over load right now. When I go to bed I am going to crash.

I had a doctors appointment today. My lung functions were better then when I went to B&W but I am not at my base line. Though that being said we are going to pull the Picc and let my body have some time to heal.

I talked about my lung evaluation at B&W and my Doctor was actually happy that I didn't feel good when I was there.

I talked to the Social worker about how I am dealing with the whole transplant thing and I think I shocked him. It took me a while to realize that I am at the point I am at with my health. Every day that passes that I need Oxygen or get short of breath just walking convinces me more that I need to get new lungs. Some days I feel like I am giving up but most days I feel like I am definitely doing the right thing.

Today, I got a call from my sister that I have been waiting for. She is in the middle of a custody battle with her ex-husband. The guardian finally wrote his report and suggested that primary residence should be with my sister. Yeah! The girls are going to be so happy! All I want is the best for those 2 girls. They mean the world to me. I love them like they were my own.

I had a great weekend. I got to surround myself with all my loved ones. Saturday, Andrea gave me 4 tickets to the Portland Pirates, which is the local NHL AA team. I was able to bring my 2 nieces, my sister and her boyfriend. Earlier in the day I went to the local farm with my nieces and my sister. We picked out pumpkins, went on a hay ride, drank spiced cider and the girls did a hay maze. Sunday I picked the girls up from my sister to bring them back to their dad's because I was going that way to go celebrate my mom's birthday with her. I got the idea to see if the girls could come with me. Their dad said yes so they spent the next 24 hours with me. I think my mom was happy to see them. Sunday night I went to my friend, Andrea's house and did fundraising stuff. My mom, my nieces, my friend tracy, her daughter and Andrea's 2 kids were all there. It was so great to spend time with all of them. Monday, I went to breakfast with my mom and Dad and them went and visited my Grandmother and Nana.

I am very tired but very happy!