Hi everyone, so its 1 week since iv been on waiting list. Had my first dream that i had had the call and i was down in Newcastle about to receive my new lungs...was a pretty scary dream.
Just writing to update you on how my Race Night went. It was a total success! So far we have raised £2070 that is from the race night and a few donations people have given to me too. Since totaling that up i have still had more donations given. I am so over whelmed at everyone's support for my family and I. Knowing that when the time comes my mum and dad can focus on me and not if they can comfortable stay in Newcastle really helps take the worry and pressure off my shoulders. I will be in the local paper again next week to give an update on the Race Night and to talk about the Football game that is happening on the 23rd of June.
Everyone said my speech at the Race Night was well given and i hope so too, i am glad i never got upset when doing it. However as the night went on and people were saying their good byes to me and wishing me luck i began to get a lump in my throat because knowing how much people really care and that i dont want to let anyone down. Also the vodkas didnt help the emotions lol.
So i have bought my suitcase that i still have to pack for when i get the call and i have arranged a meeting to discuss what i would like if and when the time comes for my funeral. Would hate to leave all of that sort of thing to my parents , would be a lot easier for everyone if it was pretty much all taken care of. So....so far so good!
You will hear from me after the football event!
Peace!
Thursday, 13 June 2013
Wednesday, 5 June 2013
Monday, 3 June 2013
Im now on the active waiting list, waiting on lungs!
It came today in the post...the letter
"Dear Lisa
We are writing to inform/confirm you that you are now on our active waiting list for bilateral lung transplantation."
This means i am just waiting on a call to tell me lungs are available. I can get a call next week or in years, no one knows how long i will wait. Thats why if my lungs deteriorate it could be fatal so i have to listed now as i might wait a while then again i might not.
That strong feeling came over me of panic,fear,nervousness....the negativity was over powering my positivity.
I had to leave my house as i was going shopping to buy something to wear for my Race night fundraiser. As i drove my car to Stirling , every word of every song i was listening to related to this transplant journey i had started,the stress,the faith, the love, the anticipation. It all got a bit much for me and i began to cry as i was driving, i felt as though i was standing on an island and it was just me....i was all alone! It was just me and the sea waiting for the life boat to come save me. I felt i have still to much to do before being listed, i still need a suitcase to pack my transplant clothes and things in. I still havent made up the CD i would like in Intensive Care for after the operation, during my recovery. I still havent been to Funeral services to plan what i would like if and when the time comes.
Plan her funeral - i hear you ask. Some people dont understand how serious of an operation this is. If it was straightforward everyone with cystic fibrosis would be put on the waiting list to receive lungs. It takes anywhere between 7-12 hours to carry out. I can be on more medication afterwards than i am at the moment. I will have more tubes coming out of me than god knows what, be on unreal amounts of pain relief, morphine,epidural, oral painkillers. There is a 20% chance i will die in the first year. I know this all sounds so negative but realistically this is the truth. A transplant is not a cure, it just possibly entitles more years to your life. It also means that your own organs are failing and that without one you are dying. So yeah it is great i am listed and that there is an option yet it is in no way an easy option. Im sure the shock of being finally listed will wear off and my positivty will be back in no time ;)
I also am planning on the things i hope to be able to achieve after my transplant. Go see the rest of the Caribbean, do route 66, ski,snowboard, swim as many lengths as my arms and legs can manage, cycle for hours on end,start back at dance classes, get back to zumba, go running in the park with my little cousins and friends kids, maybe one day have a child of my own.
I am currently organising 2 fundraisers and i have been since i found out i was going on the waiting list. My first one is this Friday. I was so shocked at the support and generosity of everyone since planning this. People all donating prizes, donating money, buying tickets Knowing that everyone is backing my Mum, Dad, Cole and I really helps! Organising this has been really stressful but at the same time has made me not think about being put on transplant which is a good thing i think. Another reason for this event is to raise awareness of shortage of organ donors. 3 people die everyday waiting on an organ. This event will help spread the word that bit more!
Any questions feel free to ask,more than happy to explain things to you!
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