Organ Donation Awareness!

The past couple weeks I have been in the Sun newspaper and also my local newspaper and a few online articles sharing my story of me waiting for a transplant. It has been done to raise awareness of how important it is to discuss your wishes to your family as many healthy organs are either buried or burnt to ashes when they could be used to save many lives!

 

https://www.organdonationscotland.org/news-events/brave-lisa-tells-of-wait-for-life-saving-transplant

http://www.alloaadvertiser.com/news/alloa/articles/2013/11/19/479198-alloa-woman-backs-campaign-for--organ-donors/

I have had many peoples support online with what I have been doing by sharing my story and I really appreciate it! Also the headlines say "Brave" I don't know if I would call myself brave. Being brave is when you choose to do something like jumping out of a plane or capturing a spider or jumping out in front of traffic to save someone. What I am dealing with I have no choice and I am S***ING it! So in my eyes I am not brave. There are more people who can be described as brave. Sometimes when I read peoples supportive comments online/via txt or when I read the articles, I forget its about me. Like it doesn't feel like all this is happening.

Since being listed for transplant I am still finding myself getting emotional. I find it really difficult seeing what this is doing to my close friends and family.
I often get really angry as I wish I didn't have to put them through this ( even though its not my fault) I still hate seeing them hurting and seeing the worried look behind their strong eyes. I find it hard talking bout it now to my younger cousins as most of all I don't want them to worry. Nor do I want to promise all the wonderful things we could do together if I get my lungs as I don't want to break a promise incase my call never comes.

Im often finding myself telling people advice or things I feel they need to know incase I am not their to give them it in the future. I know that sounds crazy but I am trying to think logically.

I know I am staring death in the face on and off and will  do so again in the future. But trying to make sure everyone around me is ok and will be if I had to pass is hard work. Mainly because once I am gone I know I cannot help them the way I could if I was here!! Feeling like this has really shown me that I am not ready to die. I have too many things to live for and too many people! It is unquestionably obvious that I don't want to die and nor am I scared. I am just not finished living yet.



https://www.organdonationscotland.org/register-now

Please sign the register to help others to keep living!

 

Gotta take the good with the bad!

The past few weeks havent been the best for me. I started getting a chest infection a few days after i finished oral antibiotics. And i noticed i was struggling to stay awake just this constant tired feeling. So on a Monday i decided i would go to hospital like i normally would and ask for IV antibiotics the one that i can into my blood stream through a small needle under my skin. So they gave me 2 weeks supply and i began them at home. Over the next few days i got worse before the drugs had time to work. I became very ill with chest pain everytime i coughed. Which was pretty much constantly. I could only manage to walk to the bathroom as i was so short of breath. Each day either my mum or dad was visiting me to tidy up and make me meals. It came to the Thursday and i had to have help with going in the shower as i couldnt breath well at all. My mum helped me and i just sat in the shower seat struggling to breathe whilst she washed my hair. These are the times when i have a little cry because it am under so much strain. I manged to wash myself and my mum lifted my mood by having a little laugh with me but trying to use so much effort to wash myself and breath so fast and heavy i couldnt manage to laugh. I realised i was breathing oddly like there was no rhythm it was fast then slow then in and out but i felt like i was gasping. I was also getting really bad headaches when i slept. So i would have to wake up to try to get rid of them,also if it wasnt them it was the coughing or pain i couldnt win. So the saturday came and i decided i wasnt getting better quick enough i had to go back to hospital. I got admitted and the done a blood gas which is blood taking from the artery in your wrist ( pretty painful ) and it showed i wasnt getting rid of the CO2 in my body and it was high.This high level was causing me to feel drowsy, confused, tired and have headaches. You breathe in oxygen and breathe out co2. Im lead to believe my body was needing oxygen so it starts to breathe quickly taking in alot of oxygen but not having enough time or strength to breathe it all out, causing the high CO2. So i also had to have more nebulisers and physio sessions to try clear all the thick sticky mucus in my chest that was making me feel like i was drowning on the inside. On the Monday my physio showed me a machine called Bipap. It is a machine that is a non invasive ventilator. Which means as you breathe in it senses your breath and it pushes air in along with you and you breath out normally. It feels kind of forceful and it manages to double the volume of the air in i breathe. The first night i had it on for a total of 4.5hrs which is good going for it being first time using it. Once that amount of time went past i had to ask nurse to take it off as it isnt the most comfortable thing. Whilst using it for the first night a nurse had to come in every 15mins for the first hour to measure my oxygen level,heart rate and blood pressure then every hour after that which isnt great neither when you are trying to sleep. However the next night i only managed 2 hours which wasnt good. So i was told the next day by the physio that if i want to have the CO2 levels brought down i needed to wear it longer :( .The 3rd night i wore it for 3.5hrs but woke up and had like a panic attack and ripped it off, i felt so claustrophobic.I then went to sleep till 7am and buzzed the nurse and asked if she could re-fit the mask and that i was ready to wear it some more. So i fell back asleep with it on until 10.30am . The physio was more happy with that amount of hours ;). So a doctor came and done another blood gas test and the results showed that the bipap had helped and brought my CO2 level down!! But then i had to not wear it the next night and have blood test in the morning again so they could see if it was the machine that helped bring it down or because the antibiotics were getting rid of the infection. The next blood results showed that it had went up ever so slightly so the machine did help. Fortunately i got home after being in hospital for 6days. Since then i have mainly been at home resting continuing with another week of IV antibiotics. I usually on have 2weeks of antibiotics but because it was a bad infection i had 3weeks. I also got started on insulin at night before my overnight feed that i get through a tube into my stomach. I had to have insulin roughly 6 years ago for a few weeks. Im hoping im not on insulin this time for much longer.
These type of bad infections cause extra damage to my lungs which cant be fully fixed. Each infection deteriorates my lungs that one big further. I have to say i have never had an infection quite as bad as that before it was actually very scary and got me down a lot, especially when i felt i wasnt getting any better. As i know that it is common for people with Cystic Fibrosis to have a bad chest infection that can kill them and they cant recover from. So infection isnt taken lightly. Nor do i want people who are ill to come near me!

But i am pretty much back on my feet again making each day busy ones :)

The month of August - incredible 4 weeks

Just a blog post on 4 incredible weeks iv had that id like to share with you.
The reason I am sharing is to let you know how much I am living life to the fullest, grabbing those fun filled opportunities, even if I am in a wheelchair and need oxygen I wouldn't say I am having any less fun than the next person.
The first thing i done was go out after midnight with 2 friends and watch Shooting stars up the hills as there was a meteorite shower. Something i have always wanted to do and it was incredible! So pretty and exciting to see them!

The second thing I done was met Charlotte from Geordie shore again. I am a bit obsessed I think haha. She came to my local night club Fubar. I think I like her so much because I see myself in her. I chatted to her and she could remember meeting me back in January at City nightclub which was nice. Was a quick minute convo about being on transplant list and she wished me luck. Just that short minute was amazing to me! Sad but true!
The next thing I done this month was go to my big cousins wedding. She looked stunning in her dress. The wedding ceremony was so beautiful to watch and I cried a few times. To witness love so pure was very touching and it was an honour to be there. The meal afterwards was lovely and I really enjoyed it. And the entertainment at night a live band then at 10pm a live pipe band out in the garden with a highland dancer was a brilliant surprise. A very traditional Scottish wedding that couldn't have went better.
The next day I went to Bellahouston Park in Glasgow to see GBX, my fave DJ Steve Aoki, Tinie Tempah and then Avicci. The weather was pretty good just one little shower. My Steve Aoki came on and I screamed with excitement I just love his tunes. Inmy opinion he is the best because every other DJ just stands at decs and plays tracks, he pours champagne over people, has a blow up boat that he jumps in and crowd surfs or gets audience members to jump in. And also my favourite thing is he "Cakes people" it is his signature thing. He is from Miami and sometimes does upto 3 gigs a day over different places around the world. He has his private jet which makes getting around easier. Many people world wide want caked by him. There was once a guy who got caked in his wheelchair as he was being crowd surfed in it, pretty crazy so I joked that I would crowd surf in mine and get caked at this gig. However I never :P. Tinie Tempah put on a great performance and I forgot how many hit songs he has had. My best friend Louise loved it and was great to see her having a great time. And lastly was Avicci DJ and he put on a pretty good show too.
The next gig a few days later was Eminem. I had been wanting to see him in concert since i was in primary school. I have heard bad stories about him miming and not turning up to performances. But he was sensational and i enjoyed rapping along to all his songs! Luckily we got the wheelchair viewing platform again so got to see a great view.

A few days later after that and it was my weekend away to Cheshire to the creamfields festival with my big cousin Aimee and my best friend Jamie. We had been looking forward to this for months. It is a dance festival with DJs pretty much like TITP but just dance music. I got my case packed, picked up Aimee then Jamie and we were off. A long 4 hour journey that involved constant singing, banter and educating Jamie on Woman haha! We arrived at our travel-lodge and the room was perfect for our 3 night stay. Double bed and a wee camp bed for Jamie haha! Jamie fell asleep first and i tried to draw on him but my LOUD laughing didnt help and he woke up. Before heading out next day we filled out caprisun pouches with our alcohol and stashed them in the wheelchair ;) We went to a Morissons for brunch first. When we got there it was such a sunny day however Jamie realised he had left his hoodie at Morissons but luckily we would pick it up during brunch the next day. The place was amazing tents and stages were playing the most amazing music. We knew this weekend was going to be great!  What i did notice was everyone kept coming up to me to shake my hand or high five me in my wheelchair...you would have thought i was a celeb. They were just thinking it was cool i was at a dance festival in a wheelchair. I even got a nice kiss from a cute guy, being in a wheelchair aint that bad nor does it me back from anything!The only downside from being a wheelchair was my best friend and cousins having to push me for 2 days around a field. Which they done so well and if it wasnt for them i wouldnt have been able to go! The vodka also went down great that day i was ever so tipsy. The next day i didnt drink but Jamie did so i had the job of driving to and from the gig. Fairs fair! On the sunday i had decided i was going to get front row for my Fave DJ Steve Aoki that i had previously chatted about up there ^^^. I managed to edge my way in to the front row with my wheelchair pressed right against the barrier. Not long after he had been on stage he noticed me and threw me water making sure i was ok! I raved away in my wheelchair stretching my hand over the barrier.

You can see in these pictures. Like is said previously Steve the DJ likes to through cakes on peoples faces so each time he borught a cake people were pointing at me and i wanted to be caked so bad. On the last cake he walked straight over to me and stood above my wheelchair and said "Are you sure?" and i said yeaaahh cake me! So he threw the most heaviest cake right onto my face. The crowd went crazy and everyone washing pushing forward. The cake was EVERYWHERE!! in my hair, my eyelashes, my ears, in my top, all over my seat in the handle grooves. It smelt and tastes awesome! Steve then stood over the barrier and asked if i was ok! I stood up and hugged him and said "I LOVE YOU" and he said "I LOVE YOU TOO" in his american accent. He made a young girl very happy. Such a great guy!So i left the tent and i was buzzing and fans of his were coming over and high fiving me saying "YOU GOT CAKED BY STEVE AOKI!!!" and im like "YEEAAAAHHHH" haha. Jamie just kept saying "I KNEW IT, i knew he was going to cake you i knew it i knew it!. So i feel very lucky to be some of the few to be caked by him as world wide people want that to happen to them. Such harmless fun that is so entertaining. Then we sat and watched AfroJack, LikeMike and Dimitri Vegas then David Guetta. The stage lightening and flames are some i have never seen before they were so impressive. And the fireworks at the end of the night were phenomenal. There were fireworks at our stage and the south stage going off. I must say i have been to TITP in Scotland a couple times but never have i seen a place so friendly and have better effects and standards here. The rides, the foods, the amount of stages.

 

Well they are some pictures that show you the extent of the cake mess. Also there is a picture with the celebrity Chelsee Healey who we met. She is known for Waterloo Road and being on Strictly Come Dancing.
All in all Creamfields was amazing and i cant wait to go back. I just cant wait for the time i go with no wheelchair and i can rave for a full 12hours! The DJS wont know whats hit them!

Football game and A waiting game...

Well at the football i raised a further £900 for my parents. The football was a great day out. It stayed dry i had 30 guys turn up to play. Help from friends with a sound system which i played funny songs after each person scored. Everyone had a really good time. Afterwards we went to the old brewery for some food and drinks which was lovely to see lots of people come along to that too!
I also had a call from Lornshill Academy to say they had £500 cheque for my family and I. My mum and I went to pick it up and get a tour around new school. I asked to see my guidance teacher Miss Dodds and it brought a lot of great memories back. We met in the corridor and it brought me to tears instantly. Doddsy was a great help and a friend throughout my highschool years. She would always listen to me and have great banter with. The reason i cried was kind of like i was so happy to see her but also sad as to go back to my youth when things were more simpler would be great. I also kinda felt bad that she hadnt seen me in years but was now seeing me with my oxygen on and showing signs that i have deteriorated. You never want people to see you like that. When returning home that day i then received another phone call from Lornshill this time the P.E department to say the money they raised at their sportathon to us which was a further £500. I was so overwhelmed for them to still want to donate more and to think of me. They said they couldnt think of anyone more that they would want to give it to.
I also have friends who live outwith Scotland who couldnt make my events who have requested ways to donate money. So i set up a page where they could donate and so far i have raised £80 from that so right now we are just over the £4000 mark.
This means so much to us. If my mum and dad stay in a b&b for the duration of my recovery 4weeks+ you are talking £40 a night. Then food and petrol each day. If there happens to be any money left over from the operation stay then i will use it for my future trips and hospital stays to Newcastle :) as i will have clinic regularly and will get treated there if i have any after operation complications.


Just thought i would write a bit about how i am feeling since i have been listed.
Its kind of strange as i actually feel like iv just started living , like meeting up with friends, visiting people i get butterflies as its so amazing, i see days out in a totally different light! It feels as though i have just become alive despite being at my most ill point.
I have so much positivity but at the same time so much fear....its a strange feeling. I keep fearing that i am not organised enough for it ....or how can i prepare my mum and dad. When i am having the operation will my mum and dad be coping in the waiting room while im under going 12 hour surgery. What if it takes ages for me to come off the breathing machines.
Theres still a few things i havent packed and sorted out, its so hard to get them things sorted when you are trying to live your life to the fullest,keep as well as possible, organising concerts and festivals your going to,trips out with friends haha!

I hope to be able to wear a tshirt like this one day.

I hope you have discussed with your family your wishes about organ donation.

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp

After Race Night!

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!

Posing with oxygen on!

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!

Its time!

19th February

My mum came to pick me up and help finish pack my case. We drove to my dads work to swap cars and pick him up. My mum said do you know what this is the first time i have actually felt really nervous going to Newcastle and i said thats strange This is the first time iv felt nothing! The journey down we stopped at Morrison for dinner and i wasnt to keen on anything on the menu so i chose off the kids menu and got a hot dog only to discover at the till that kids eat free , looking young pays off after all haha, hot dog chips,capri-sun freddo and a fruit bag :) We arrived at hotel at 9pm. We sat and chatted for a bit then my mum and dad went to a bar next door for a drink whilst i done my nebulisers. They werent away long and then we got settled for bed.

20th February

Didnt have a great sleep because the pillows were HUGE and to high. Wel all got ready and arrived at hospital for 11am. I got shown to my room. I had to swab myself for MRSA routine check, give urine and sputum sample. Then the nurse took my blood but it took her 3 goes. My transplant co-ordinator (special nurse) came to have a chat about how i have been since seeing them last time. I explained i started using oxygen at home since last month just using it when i need,during housework for example. She explained the tests i would be getting and that my consultant would be speaking to me today. 

I then went for an xray. Came back and a doctor came in to do blood gases. This is a blood test where they jag into your artery/pulse in your wrist with the needle being in an upright position. It tests the fresh blood coming from your heart to see how oxygenated it is which helps them know how much my lungs are working and oxygenating my blood/body. I asked my mum and dad to leave the room. I also told him the last twice i have had this done i have felt no real pain despite having heard horror stories so i hoped this one would be the same. In the past when they pierce the skin the needles just fills up straight away on its on. When he done it nothing happened ....he said i know the arteries there i can feel it and he asked if he could keep trying and i said yeah. He pushed a little deeper and i felt this almighty pain/mini explosion and the syringe began to fill up. I also let out a scream haha. I said to him OMG THE PAINS IN MY FACE! The pain went from my right side of my head down my neck shoulder arm all the way to my wrist,it was as if someone was whacking my right side with a pole. Then i started laughing and i said "Im laughing....but its not funny" . He left and my mum and dad came in and said they heard me scream. I then tried to explain to them how it felt and started to get a bit upset. I more got a fright and was shocked at how it felt especially seen as the last 2 i had felt nothing but now i know what to expect lol.

Next i had my walking test. I have to walk up and down a corridor for 6minutes with a monitor on,every minute they read out what my oxygen levels are at. This allows doctors to see how my body cope during exercise  I done the walk and didnt have to stop to catch my breathe like last time. I felt it went well. I think they said the lowest my oxygen dropped was to 73%. If that happened to a normal person you would have been passed out. When you see dancers after a performance get their breath back you will be lucky if they are sitting at 90%. The reason my body can drop so low and i dont pass out is because over 22 years i have adapted to not being able to get a lot of oxygen in but this does put a lot of strain on my muscles and organs.

Not long after my consultant came in and asked again how i have been said im looking really well and he doubts i will be listed tomorrow but will see what results say. My mum and dad left about 7.30pm and i got ready for bed and done my nebulisers. 

21st February

I woke up at 8.30am and went to bathroom and got dressed. I wasnt really thinking about the decision making that the team were going to say because i was confident they were going to say see you in 3months like the last twice.I watched tv and had a bite to eat. A woman came in and said im here to do your breathing test with a little machine on wheels, i said dont i have to go downstairs to the clinic and do they handful of different breathing tests and she said no just this one. So i done it and thought they must not be wanting to list me if they arent doing all the big tests. One of the ward nurses came in and said you have a scan at 2pm. I was disappointed because my consultant was coming back around 12.30pm and we were hoping to leave soon after to go for lunch to an Italian which closed at 2.30pm. Also this scan is a scan like they do when you are pregnant but on the veins/arteries in your neck. The hospital needs to know where they can access these for during the operation they will having lines going into my neck. But also since i was in Newcastle in October they had asked my hospital in Edinburgh to arrange this scan. They were not happy that Edinburgh had not done this despite them phoning them and sending a letter. To make it worse i had been in Edinburgh maybe 4 times for antibiotics and another twice for clinic where this could have been arranged.
So 12.30pm came and the team walked in my consultant, co-ordinator, 2 doctors and an  anesatist ( the person who puts your to sleep in theater , keeps your stable through out and controls your pain relief afterwards). My consultant said " Well Lisa we have been having a long hard discussion about you, and we think that right now you are in the window of opportunity for being listed for transplant. (If you look to my older blog you will see what is meant by window of opportunity). I burst out into tears i didnt think they were going to say that. The co-ordinator got us tissues as all 3 of us broke down in tears at the same time and my mum got up and cuddle me. He said you do look fine on the outside and you cover up how sick you actually are but the numbers and results show a decline since we last seen you which can help us predict that you are going downhill and a serious infection could be fatal. He said now dont feel that you have to agree with us but what would you like to do? You can sign the papers now, go home think about it then come back or we will go away for 30minutes let you think about it. I said could you go away for 30minutes and let me think about it.
My mum said so what do you want, i said im not going to say No i just feel i cant find it to say Yes! I couldnt describe to my mum and dad how i felt it was a feeling i havent felt before. A lot of friends and family keep saying " oh i hope you go on the list, i hope you get your new lungs" but to me i know how major this operation is and the survival rate isnt always that great. People seem to think you just get lungs and your lifes a piece of piss but its not exactly like that. If you read my older blogs you will understand. So to be told my lungs are failing more and that im needing this transplant because if i dont i will die is hard to take. To sit there and know you are dying is hard! I said to my mum i feel angry at myself, that my lungs arent doing well despite being told i would be dead by the time i was 4 i should be proud of my lungs, the anger was just there a short time though because i am proud of myself and body because i do all my treatment and i do ask the hospital asks. The reason i was finding it hard to just say Yes lets go ahead with this to the Team was kinda like.... maybe a bad example but like on Jeremy Kyle show there is someone with an addiction alcohol/drugs and Jeremy says right we have a cab outside ready to take you to rehab and they panic you know they want to go because the alcohol/drugs are killing them but having to face the fact they are ill and need help is the hard part. And it was for they few minutes i couldnt accept i was dying, my lungs were deteriorating and that i needed their help.
My surgeon came in and could see we were still crying and said i know you dont want to sign the papers so he just went away. But we only had been sitting for 15minutes still trying to take it all in and pull ourselfs together. So he came back in and i said im ready to sign! I wasnt going to say No i was just finding it hard to say Yes!
Next my co-ordinator came back in going over a few booklets and forms i had to fill in regarding what lungs i would/wouldnt accept. They do say that if they get donor lungs and they feel they are not healthy/suitable to be transplanted they wont do it. But by rights i can reject lungs that have come from someone who have smoked/are a smoker,have had a brain tumor, are someone over the age of 60. But if i agree not to take these lungs it will HUGELY limit the amount of lungs that will be available for me as numbers are limited already and as i am only going to get more ill, time is at the essence. These lungs could still garantee me many more years of life so they may be best to take.
My anesatist then came in to ask me a few questions, talk about her role in the theater and how she decides what pain relief i need. How that after the transplant i will be in ICU on a ventilator until they think i might be able to breathe myself. But she will put an epidural in my spine before i wake up so i cannot feel any pain.

The crying had stopped for now and it was 1.30pm i then had to go get my scan which i was there for an hour because they were so busy. Then i got my suitcase and we left.

The car journey home was a bit quiet, we were exhausted from crying and the shock. But none the less we still had a laugh slagging each other as usual. And we go home at 7pm.

So in about 6 weeks time when paper work and other results are gathered i will be on the active waiting list.

If you feel you have any questions in regards to my hospital stay or what they told me or even how i am thinking just ask. The more you understand the easier it is for me!!!

Another Freeman Hospital Assessment trip

Hi

Leaving again today for Newcastle staying at hotel tonight then going to hospital for around 11am tomorrow. Will be getting tests like i have had in my last 2 visits and then Thursday early afternoon they will tell me their verdict. Whether or not they predict my lungs wont last me much longer and a transplant is recommended or whether my lungs havent deteriorated and they will see me again in 3months. Now remember getting a transplant isnt a cure nor does it always mean success or guarantee a better life, there is 20% chance of people dying in the first year of a transplant because of rejection to the organs and or infection. Thats why keeping my own lungs may be the best thing for me just now . Read my previous blog from last summer to help get a full understanding. I will write an update when i get home on how it went and what they decided.


Speak soon!