Reposting: My Story

I wrote this the night before my 2nd Transplant anniversary. 6 years later I thought I'd share it again... It brings back so much emotions and memories every time I re-read this...


At this very moment 2 years ago I was in my mother's car being driven at what felt like warp speed to a hospital three hours away where I was supposed to be given my second chance at life. I'd hugged and said goodbye to my best friend for possibly the last time. Called my sister and told her I loved her and her kids and even had a small panic attack while trying to calm the rest of my family by telling them it's all going to be alright (even though I was so uncertain with my own words).

I'd prayed for this day to come for a year. Each day learning everything I could about transplant and the life I could have with new lungs. I wanted to know what it was like to breathe. To not wake up every single morning unable to stand up because I was so short of breath from a coughing fit. What was it like to sleep with One pillow instead of six? To not revolve my day around breathing treatments and little windows where I felt good enough to get a quick shower, or fix myself a quick snack. Oh to not be so dependent on others to take care of me!! The possabilities I had for what looked like more of a future than I'd ever dreamed of. I had so much plans for myself and couldn't wait to get started!

So, while watching television (Everybody Loves Raymond to be exact) on a Friday night I received a phone call on my cell from an "unknown" caller. I quickly answered it and on the other line was a man's voice (which soon after this point became my hero) telling me calmly that he had a set of beautiful lungs for me if I was interested. I had to have him repeat it.. All of a sudden my ears started to ring and I couldn't understand the words being spoken to me. After he repeated himself he asked if I was interested. Was I interested? It's too soon. I'm not ready... But the only thing that came out of my mouth was YES. He gave me instructions where I needed to be, and to be there by 1am to be checked in. I got his pager number, his cell phone number and another number to his office. If I needed to call for ANYTHING, I had a way to find him.. My surgeon; My hero.

I got to the hospital by 12:30am, checked in and into my new room to wait by 12:45am. Everything happened so quickly after that with the pre op tests, questions and the wardrobe change. After all that was done it was time to wait.. Boy did we wait. Every hour or so the nurse would come in and tell me and my family that it shouldn't be much longer until the OR is ready for me.. Finally at 8am Saturday, September 25th I was being wheeled into the O.R. I told my family one last time I loved them and with a smile on my face and my heart beating almost out of my chest I said goodbye to them quietly, without them knowing.

I woke up the next day in the ICU with my dad looking over me. His first response was yelling to whomever else was in the room that I was awake. By that evening my ICU nurses already had me sitting on the edge of the bed. The next day I was in a chair and from then on I was either in the chair or walking the halls unless it was bedtime and only then was I allowed in my bed. I definitely had a love/hate relationship with those nurses, but in all honesty I couldn't have asked for better angels looking out for me. After a few complications and 12 days after my surgery I was ready to be discharged and move into what would be my new home by the beach for the next 6 1/2 weeks.
I was so homesick while living in that hotel. There isn't words to discribe just how much I wanted my own bed and my friends to visit with, but somehow time passed and on the night before Thanksgiving I was packed up and on my way home with my mom. With the car packed as tight as it could possibly be I asked my mom to stop by my best friend's house before going home. I called her from my cell and told her how much I missed her and wished I could be home to spend Thanksgiving with them. Meanwhile I was walking up her doorstep without her knowing. I rang the doorbell and on the phone I told her "ding dong". Her father answered the door and he and I just grinned at each other... She was in her room squeeling with every bit of happiness that could come from her tiny body! She ran out and gave me a huge hug. Oh what a wonderful feeling to be home! To have my people around me again.. Surely all of this crap I'd gone through had been worth it if I get to have a little extra borrowed time to spend with the people I love. I will never forget what my friend sent as a text message to me that very night before I'd gone to bed.. "You brought the holidays back with you" That love is what I fought so hard to keep, what I still fight so hard for.

So, two years later and I feel amazing. I'm not feeling perfect, but I can't expect that. I wouldn't be here right now writing this if I hadn't had the opportunity to be given two new beautiful lungs from the donor who gave one last time to a complete stranger. I spend each of my anniversaries both thrilled to still be here, but also grieving for the loss of this wonderful person who saved my life. I hope to someday get a chance to meet the family of my donor and tell them how much their child/husband/wife means to me and not a day goes by where I don't thank them for this second chance.

I do not know why I wrote this blog, but I've felt the overwhelming need to talk to my donor and obviously I can't. I figured instead I could tell my story a little and possibly get others to consider talking to their families about becoming donors. I have a dear dear friend who is waiting for his transplant, but there are just not enough people who make it known they are donors, so too many life saving organs are not used to help people like my friend. If you want to be a donor, tell your family and go to http://www.donatelife.net/http://www.donatelife.net/">http://www.donatelife.net/
> and find out how to sign up on the national organ donor registry. It doesn't work if you just put that pink dot on your drivers license, your family members can over-ride that.
Thank you for reading my story and I apologize for it being so long. Oh, and yes, I sleep with One pillow now = )

Finally, some hope.

Good afternoon all to all my blog readers!

I'm very sorry I have not updated my blog until now. I didn't have anything new to share (until now), so I didn't really know what to write for you all. I don't want to bore you, so I waited until I had something worth while to share.

Since I last updated, I did a 4 week course of antibiotics (4 weeks oral/ Levaquin, and 3 weeks IV/ Cefapime ). I was feeling pretty junky in my lungs and running fevers while waking up with my sheets drenched from cold sweats, so I had to give in and get some antibiotics on board to help the infections that were cookin'. The IV antibiotic was ordered for me to do 22hrs per day, giving me 2 hours a day free to shower and run errands. After about a week on the IV antibiotic I was feeling pretty sick from the med itself on top of feeling bad from being sick. I finished up the antibiotic still feeling pretty crummy, so I talked to my doctor and decided that it was probably time to get bronched and open up the stenosis I have in hopes to open it up enough to allow me to cough junk up so I can get rid of the infection easier.

I went in on Thursday the 14th for my bronch; the day after a set of photopheresis treatments. My doctor went in expecting to see my airways red and inflamed, with either 1 or both airways stenotic (narrow). What he saw was my airways almost back to the pale color they are supposed to be! Both main airways were stenotic, so he opened them back up via balloon dilation and took some pictures to show me once I woke up.

I'm attaching both a set of photos that were taken back in February of this year, before I started photopheresis treatments, and a set of photos that were taken last week. Note the very red, irritated airways in the first set. This started to appear on my bronchs around the time that my PFTs began to decline a few years ago. My CF doctors assumed the inflammation and redness is due to chronic rejection and we really didn't think it would get back to it's normal pale color.

The second set of pictures are from the bronch I had a week ago. Note how the redness is almost gone! The photos were taken about 10 weeks after the start of photopheresis treatments there at U.C. Davis. We're excited and very hopeful that this is a result of the photopheresis treatments working! Maybe, just maybe, the treatments are stopping the progression of rejection! I have not done PFTs in a while, so I don't know if I have any improvement with that yet, but my lungs sure look better! You'll see that the airways are still stenotic in the first few pictures, before they dilated, then much more open (and even a little more red) after they dilated and messed with them.

So that's my good news! I'm extremely hopeful that these treatments are actually working. I do not feel better, but we really didn't expect for me to feel better with the treatments. We were just hoping I wouldn't get worse, which from the look of my airways, may be the case!

All of you who are considering photopheresis,
Like all medical treatments, it's not a sure thing. It does not work for everyone, but we chose this treatment over taking medication that would knock my immune system out and I'm very lucky that we may be seeing positive results from it. I feel so grateful that I found a doctor who would not give up on me and decided to give photo a try on my rejection. If it were up to my transplant center I would be waiting on the transplant list right now for new lungs. A huge thanks to my post transplant friends (especially Christy) for showing me all the options there are for people in chronic rejection and not allowing me to give up on these lungs. I know I may be jumping the gun a little, but I'm thinking positive! ;)