While it is Halloween today, it feels like it should be Christmas. It is doing that weird Chicago thing, you know snow/rain coming down sideways and ice pellets hitting you in the face as you walk down the street. How lovely?
Last night I finished my last IV and then deaccessed myself. Taking out the needle in my chest from the port-a-cath was the greatest feeling. The port is the best thing I have decided to get because it makes having to do IV's so much easier but having a needle in your chest for 2 weeks at a time can get irritating. The tagaderm, or special tape to cover the needle and keep it clean gets itchy too. Anyway, I am needle free!!! (Until next time)
The IV's helped a little but not as much as they used to. I was still coughing blood last night and had chest pain. Something I guess I just have to get used to. Most people keep a bottle of water at their bedside at night, I have a bottle of water and an empty bottle that I cough my blood into. Hah really attractive right?
As I am starting to come around to the idea of a transplant I can't quite grasp it. I cry. For one thing, the emotional rollarcoaster of being on the transplant list is daunting to me. Then the actual transplant scares the bejesus out of me. The thought of my family watching me lifeless on a bed as a vent breathes for me makes me cry even more. I watched my dad on a vent after his second open heart surgery and it looked so fake. He looked like a dummy lying there, and every 30 seconds or so the vent would breathe for him and his chest would rise then go back down. I couldn't handle watching that and I don't want my family to see me like that. You are so lifeless and helpless at that point, hooked up to so many machines, IVs, tubes and who knows what else. Also, selfishly I am so afraid of waking up on the vent and gaging on the tube. I am also so scared to have chest tubes. They are HUGE! Then there is the surgery itself, there are so many things that can go wrong. It is so overwhelming. I know it should be a simple answer, do you want a transplant to extend your life and live longer? But there is so much that worries me, that the answer is not as clear cut as it should be.
If I make it through and everything is successful then the following years there will be fear of rejection. If my body rejects the new lungs, again I will be faced with the decision to go on the list again and have another transplant to save my life or just accept the fact that this is it.
Switching gears here: In honor of Halloween, I am dressing up as my favorite- Winnie the Pooh!! I am so excited!!
I have yet to try on my costume but I am positive it will be amazing.
The little things like dressing up for Halloween and meeting friends for dinner make me appreciate being out of the hospital and my health as it is. I am fortunate enough to be able to still do these things.
Happy Halloween!! Looking forward to lots of candy and dressing up!
Friday, October 31, 2014
Tuesday, October 28, 2014
Technically a week and 2 days away from being 25 years young
Technically, I'm only 24 years young but in that amount of time there are many things I've come to learn.
Last Friday I went on a job interview and the HR manager asked me a simple question: What is success to you?
Do I really want to divulge to him what I consider a success? For one, I think the fact Im sitting in front of him dressed up and acting professional when I spent the entire night awake coughing and finally fell asleep about an hour before I was supposed to get up- I would say that is a success. Or how about how I walked home from the grocery store the other day carrying a gallon of milk and juice among other things a success I struggled to walk down my buildings hallway (because of course we live in the corner apt)
To answer his question "correctly" I went with success depends on the person, for someone who has a learning disability it could be as simple as graduating college for someone else it could be becoming the CEO of a company or for someone like me its knowing I made a difference in someones life. It may be cheesy and not the answer he was looking for, but for me its the truth.
In the CF world I still have relatively healthy lungs but as they are getting worse I give those with less lung function so much more credit. If I struggle to walk a flight of stairs, get exhausted after showering sometimes, I don't know how they do it. I feel bad too because I feel like I have 20% more lung function then some, and yet I complain about it. I am sure they would love to gain that percentage back. It is really hard to judge someones perspective.
Within the past 3-4 months I have noticed a significant difference/change in my lungs, and unfortunately my PFT's have matched. As they slowly decline, there are little things I took for granted before that I wish I could have back. Not only is getting sleep very difficult but almost impossible when you feel yourself almost drowning in your mucus. Waking up hour after hour, constantly coughing is not the ideal way to sleep. Sometimes its the cough that wakes me up, others its the "choking" on mucus that gags me. I thought oxygen would help, and it does a little but I don't think I'll ever sleep like I used to. What is worse is that it not only effects me. I know I woke my parents up, I am afraid to ask my roommates.
The pain has gotten worse too. It used to be only when I had a "flair up" but now its almost always constant. It's even worse when the doctors don't believe you or think your just drug seeking. Granted, I messed that up- I screwed up, I know it but when you wake up in the middle of the night feeling like your lung is being stabbed and it hurts to breathe in or out so you take shallow breaths, I promise you this- I'm not drug seeking, I'm in pain.
At 25, I thought I'd have more to show for it. I'm happy where I am in life and everything that happened to get me here but a part of me wishes I did more. I am very happy about moving out and getting my own place in the city. I love the city!! I couldn't dream of any place I'd rather be. Being young and doing the "singles" thing of going out on the weekends, and dressing up at Halloween parties and taking the el to and from work and walking to the lake is just perfect. I wouldn't trade this life for anything.
So another 2 days of antibiotics and then freedom!
Last Friday I went on a job interview and the HR manager asked me a simple question: What is success to you?
Do I really want to divulge to him what I consider a success? For one, I think the fact Im sitting in front of him dressed up and acting professional when I spent the entire night awake coughing and finally fell asleep about an hour before I was supposed to get up- I would say that is a success. Or how about how I walked home from the grocery store the other day carrying a gallon of milk and juice among other things a success I struggled to walk down my buildings hallway (because of course we live in the corner apt)
To answer his question "correctly" I went with success depends on the person, for someone who has a learning disability it could be as simple as graduating college for someone else it could be becoming the CEO of a company or for someone like me its knowing I made a difference in someones life. It may be cheesy and not the answer he was looking for, but for me its the truth.
In the CF world I still have relatively healthy lungs but as they are getting worse I give those with less lung function so much more credit. If I struggle to walk a flight of stairs, get exhausted after showering sometimes, I don't know how they do it. I feel bad too because I feel like I have 20% more lung function then some, and yet I complain about it. I am sure they would love to gain that percentage back. It is really hard to judge someones perspective.
Within the past 3-4 months I have noticed a significant difference/change in my lungs, and unfortunately my PFT's have matched. As they slowly decline, there are little things I took for granted before that I wish I could have back. Not only is getting sleep very difficult but almost impossible when you feel yourself almost drowning in your mucus. Waking up hour after hour, constantly coughing is not the ideal way to sleep. Sometimes its the cough that wakes me up, others its the "choking" on mucus that gags me. I thought oxygen would help, and it does a little but I don't think I'll ever sleep like I used to. What is worse is that it not only effects me. I know I woke my parents up, I am afraid to ask my roommates.
The pain has gotten worse too. It used to be only when I had a "flair up" but now its almost always constant. It's even worse when the doctors don't believe you or think your just drug seeking. Granted, I messed that up- I screwed up, I know it but when you wake up in the middle of the night feeling like your lung is being stabbed and it hurts to breathe in or out so you take shallow breaths, I promise you this- I'm not drug seeking, I'm in pain.
At 25, I thought I'd have more to show for it. I'm happy where I am in life and everything that happened to get me here but a part of me wishes I did more. I am very happy about moving out and getting my own place in the city. I love the city!! I couldn't dream of any place I'd rather be. Being young and doing the "singles" thing of going out on the weekends, and dressing up at Halloween parties and taking the el to and from work and walking to the lake is just perfect. I wouldn't trade this life for anything.
So another 2 days of antibiotics and then freedom!
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