Operation Deep Breathe: Deeper, try to breathe deeper!

Please contribute to my fundraiser if you can: www.youcaring.com/trishtaylor

As I lie here in bed trying to get to sleep tonight, gasping to breathe from the raspy crackles in my chest with sharp, excruciating pains of feeling like a bowling ball is rolling around in my lower lungs hurting with every, single breath, I realize that I never really thought about what "End Stage CF" would feel like. If I had cancer, I guess it would be classified as Stage Four (not much else you can do for treatment) as one is placed in hospice and is just playing the time game. But for ESCF, it's different. You just have to endure till the pain gets to be too much, without hospice, and hope that your waiting game doesn't take too long or your breath of life will come in time. I think about that a lot.

I sometimes do feel like my situation is similar to that of a cancer patient who has been told they are in Stage Four, but it's a little different because I have "something hopeful" to look forward to... kinda. If there is time, I do. I look back at all the loved ones in my life who have accompanied me in my time of need and sickness. They all couldn't imagine anything happening to me. My cousin Caroline, today, mentioned that if something were to happen "it wouldn't be on her watch" and it made me think about that. My mom and hubby and even my aunt and sister have been at my side and seen me at about my worst health ever. I am sure that they probably thought and hoped the same thing. What if!? What if something happened to me during the time I was with them? Would they feel responsible? They would really have nothing to do with what I was going through while I was in their care. What a burden! I know that it is stressful for her to see me deteriorate and gasp for breath every day, when we used to be footloose and carefree as children, running around together at festivals and throughout life.

With the worsening of my lungs, hardening with scar tissue, filling with thick, sticky mucous constantly and more frequency of hemoptysis (a spurting, gusher of blood letting loose inside my lungs to bring up) never knowing if it will be fatal at each given time, END STAGE CF becomes a reality in my eyes as well as my loved ones. It's a scary thing.

Being in the "hopeful" place I am at right now is amazing but it's hard to stay positive and really cheerful. I COULD HAVE so much more ahead of me. I've worked so hard to get here in dealing with my CF, also everything that has taken place to be in the transplant queue and on the list for the miraculous gift of life which I am waiting for. All those years in which I have been so attentive with my self care to prolong my lifespan brought me to where I am at now... going into my 50th year. I never thought I would get gray hair and even SAY fifty, regarding myself. And now, I AM here and am possibly getting a second chance at a normal span of an average lifetime. What a lucky girl I could be!

As the days progress and pass by... another month gets turned on the wall... I wonder. I wonder if I truly do have more work to do here!? I am hoping that I do and will have a bundle of things for these hands to do. I want to work and help and matter! I want to pass on the love that people have shown to me and I want to give hope to others who otherwise might not be on a road so smooth, as well.

I honestly didn't know what my circle of friends encompassed until this happened. I have cheered for others, been a friend to many and am always so fulfilled in helping people that I have been told NOW, it's my turn to sit back and let others take care of and cheer for me. I want to pay it forward if and when I get my new lungs. It will be my gift to the universe after I have received a gift that is unfathomably miraculous.

New, blue Just Breathe T shirt atat the One on 1 Design site ..To help me with my fundraiser. www.oneon1design.com/just-breathe

Please pray for me. I can feel your love and prayers swirling all around me sometimes. It is a great place to be and a wonderful feeling. Specifically, pray for me to have peace during this time, free from the everyday stresses of financial burdens this endeavor will encompass, struggles from medical or insurance professionals or people in positions who do not realize the extent of what a person with 17% of their lung function has to deal with each day just to talk or "show up". Getting out of bed and keeping enough calories in my body is a struggle, too! Pray that I get my lungs when the time is right.. that the time is perfect for the universe not just for me. I know I sometimes struggle with the donor family and their grief... so when it is ready and they are ready... that is when it will happen. Not until. It's not just about my life... it's about someone's loved ones' death, in order for me to breathe again. It will happen, but only when the time is right. Consider donating life. You, just you, could save up to and help 8 others lives. "Wouldn't you like to be a donor to? Be a donor... " Many people are uneducated on this subject matter, therefore ignorant about their opportunity in life to help and save people.

Me and my honey!

Just a little emotional and wanted to get this off my chest. I hope to have a very long life ahead of me, but am so thankful that my life so far has been hugely fulfilling and I love you all so much! Good night... I hope I can sleep now.