While browsing through other CFers myspace profiles, I found this video. I thought it gives a good idea of how living with Cystic Fibrosis really is. It's not sugar coated, so you may want some tissues close by.
Tuesday, November 11, 2008
Be honest, does this IV make me look fat?
So I've been feeling pretty crappy the past three weeks. It started feeling like it was my stent closing off again, but then quickly led to full on flu like symptoms. This last weekend I started feeling a lot worse, so I had my CF doctor fit me into clinic yesterday. My CF docs don't think the stent is closed off, but think I'm dealing with another lung infection with my old cf bugs. My body trying to get ready to fight off this infection is what my doctors think is making me feel so sick since I'm not able to build the white blood count needed to fight the infection on my own. So, they started me on IV Meropenem and oral Cipro for three weeks. I haven't been on home IV's for about 3 1/2 years, so it took me a little while to figure out the pump again lol. I'm only stuck to the IV pole for thirty minutes every eight hours, so I suppose that's a good thing.Besides the sick thing, I'm doing pretty good. I'm in my final week of my second class with University of Phoenix (online campus) and am very excited about how well I'm doing with it so far. I'm getting ready to make a big change in my life, but will go more into that at a later time. I need to go lay down and get some sleep. It seems like sleep is the only thing I've found that makes me feel even a little bit better right now. Oh yeah, I got my flu shot yesterday while in clinic. My arm hurts, but it hasn't made me feel a whole lot worse than I already do, so that's a good surprise!
Saturday, November 8, 2008
Let's make some $ for CF research
I learned yesterday that a friend of mine is helping put together a Call For Art to go along with an annual Wine Opener fundraiser in Sacramento. I offered to donate a copy of one of my most favorite photos I have taken and developed myself in a photography class a few years ago. The photo will be up for silent auction at the fundraiser. I call this photo "War Wounds". It's a self portrait of my transplant scar.
The photo was taken with a 35mm camera, so it's a bit grainy. I actually prefer this look though :) Let's hope everyone else does too and it makes a lot of money for CF research!
If you live nearby and are interested in attending the Wine Opener, please email me for more information.
Everyone has a story... Here's mine.
I wrote this the night before my 2nd Transplant anniversary.
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/ 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 = )
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/ 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 = )
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