My Story From The Begining

Tuesday, 21 May 2013

Random Ramblings! May 21, 2013

I want to start off by thanking everyone who has been supporting me while I go thru this next chapter of my life! Thank you to those of you who are reading this blog and sending me kind messages. I am a fighter, I am strong and I am not willing to let CF win. Thank you to those who have said I am an inspiration to them if I can help out just one person realize that in life there is only one guarantee and that is that we are all going to die but no one knows when that day will be so never take a moment for granted and take time to spend with the people who are most important to you. Slow down and realize what the true blessings in life are. And those blessings are up to you to decide! Anyways!

I wanted to tell you about a girl named Lorna whom I met over a month ago while hanging in the hospital here. All the years being in and out of hospital I have only met a few people with CF but have never really had the chance to really talk to someone about growing up with CF and living with CF. People with CF are not encouraged to hang out bc we can pass bugs to each other which is dangerous for our lungs. But now that I don't have CF lungs it is safe for us to visit and hang out. We are still cautious and don't go super close just In case but having someone here to talk about my disease and what I've gone thru my whole life is nice. We have talked about all growing up with CF and how both our pants treated us like we were normal kids and never held us back bc of our CF. We discussed how as a teenager with CF all we wanted to do was be normal like our friends. Go out, date, not have to do physio, do daily breathing treatments. We talked about different treatments we went thru and compared. Lorna is 39 and has been waiting for the past ten years for a lung transplant. She was farely healthy growing up and would have the odd hospital visit for a tune-up. She even has a 14 year old daughter. She said when she was pregnant with her she felt her healthiest. But CF started to take It's toll. Lorna has been in the hospital since December and is still waiting for a transplant so she can start to live a normal life. If that is even in the vocabulary of someone growing up with a terminal disease. I can say that my last twelve years may not be your normal but it has defiantly been my normal. For people living with CF the hospital becomes your second home and the nurses are more then just a caregiver they become friends. Lorna is now going to have the same transplant that gave me my life back on June 7,2013. After all the years of waiting she finally will be able to breath. Her mom and sister are donating one of their lobes to her. She is super excited to be able to leave the hospital and live a "normal life" I can see after being here as long as she has I'd be super excited to move on with my life. Lorna has also taught me a few things about being in the hospital like you are aloud to sleep in if you haven't gotten a good night sleep. When we first met she told me she didn't get up till 10 every morning and I asked how do you do that cause I'm woken up at 7:30 to get my vital signs taken. And she says I just tell them to go away and come back later. She even has on her white bored "please let Lorna sleep" I know there have been a few nurses probably get scared by the morning ray of sunshine I'm sure Lorna is when being woken up after spending the night trying to get to get to sleep from having to deal with couphing all night. I sure don't miss that. She is also a typical CF patient pretty much taking control of her own medical care. We tend to like to run our own IVs, hook up our own tube feeds, do our own meds, and some set our own schedules. Lorna also makes and changes her own bed, has her own fridge, kurig machine, and her room decorated with pictures from family and friends. And in till I met her I had no idea family or friends can actually stay in the room overnight with you even if you share a room. Her fiancé even snuggles with her in the little hospital beds. They stay up late and sleep in during the day. To bad I didn't meet her earlier I may have know more but have always been a very compliant patient and am kinda like to follow the rules. She's trying to change me into a "rule breaker" lol I believe she even told my nurse to let me sleep in one day bc I was complaining about being so tired so she asked me who my nurse was and the next day it was a Sunday I got to sleep till 9:30. Lorna is in awesome shape and tries really hard at the gym to build muscle and get strong. We compared our weights we were doing for leg press and I was excited bc I went from 40 lbs to 65 lbs and Lorna is shorter then me and weighed about what I weighed when she was admitted but now she is a healthy 112 lbs which she looks really good. Anyways her weight on the leg press is 200lbs so I got a bit of ways to go. Also I never knew there was a pool here till she told me she goes in the pool every Thursday and does extra exercises. Lorna is a super girl and reminds me of how sick I was when I had my transplant 12 years ago. She has the typical CF cough were everyone takes a double look when your out of the hospital and wonders why you aren't I. The hospital and while in the hospital people think you have smokers cough or really bad pneumonia but not people it's just CF and it's what CF ers deal with when they grow up. I am 34 and Lorna 39 and in CF years we are pretty much considered seniors. Without advances in lung transplant neither her nor I would have or had the option of the living lobar lung transplant that has given me over twelve years and will allow Lorna to live her life. As of today's date May 21, 2013 her countdown to a new life with her fiancé, daughter and family has began. 17 days!!!! Please Pray for Lorna and her family and that they can have the same joyment my family and I received after having a successful transplant.

Today was another weigh in 39.4(87 lbs)Happy Dance I am almost close to my goal of 40kg I wanted to gain before going home to continue to gain weight. I am glad that I have made such great steps in gaining back my weight and getting stronger. Looks like I'm starting to see the end of the tunnel and back to life at home and start my life for a chance at beginning to live again!

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