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!

Another stressful trip for assessment!

Hey just another blog to fill you in one my trip to Newcastle freeman hospital this week.

Wed 17th Oct

I woke up 6am and left at 7am with my mum and dad. I decided not to drive as i know a 3hour journey then tests i would be to tired. We arrived in Newcastle around 11am and headed to ward 29. A nurse greeted us and said my ward was busy so i went to ward 27 downstairs. I got a room with no toilet and was told it was maybe best not to share toilet for cross infection but to use commode (toilet on wheels ) . Nurse asked some questions, put onw rist band, swabbed me for MRSA, asked for urine and sputum (mucus) sample and took some bloods. She also weighed me. I used the commode to give urine sample but after that i decided i felt to uncomfortable using it haha especially if i ended up needing a number 2 hahahaha! So said i would take the risk using shared toilet.My transplant co-ordinator (special nurse) came to chat for a bit asking how i had been over 3months, what results i was hoping for. Sometimes people feel they have detoriated and say i feel i need to be listed to get these lungs where other patients may feel they have improved /stayed the same and say no im still ok as i am. She said i wont need all tests as my last 3days visit but just some. I was glad to hear that. To cram 3 days worth of test into 1 was quite daunting. She also said the team would be round to give their verdict tomorrow around 12pm.It was now 12.30pm my mum and dad went to canteen for lunch and i waited in room. A porter came and took me down to lung function, i waited 10mins to be seen, i said to guy i was told iv only to get one test here, he looked through notes and said no you've got 5 different ones. I was gutted as by this point my eyes were starting to close and i knew they are hard work doing each one 3 times. This guy was different from my last trip- if u had read it i said i ended up having fits of giggles then. Well onto my third test this time where u have to do a sharp blast out, i made a funny snorting noise and the giggles came. The next bit i have to do a sharp suck in. To just as i was about to breathe in the guy goes "SUCK IN" and yes i did laugh but didnt tell him why.... Then a member of staff comes through the curtain and says "Oh hello i remember you from before" and he looked at the guy and said "the last time she was here she was giggly, has she been giggling today and he replied yes! he said "The last time she was here i had never seen someone enjoy these tests so much before" Got a little beamer but wanted to laugh even more bad had to concentrate wanting to get the best results!. So i then had to take an inhaler sit in waiting room for further 20mins then go back in and do one of the tests again! Falling asleeeep! I then got wheeled to ECG which is sticky things on your body measuring your hearts activity. Then off to xray. I txt my dad saying if the physios come to do my 6minute walking test can you ask them if i can do it tomorrow morning as i am so tired. I returned to my room and my dad had told them for me. My constant came in and asked how i had been any change in medication,if i had any questions. I then had some dinner in my room and my mum and dad left as they still had to check in at hotel and have their dinner plus they were tired too. I done one nebuliser, watched some tv then took my other nebuliser (drugs to breathe in to help break up mucus) put my pjs on and then took my tablets. It was approaching 9.30pm and i thought about putting my light off and try go to sleep doubting i would it being so early and me being a night owl. But by 10pm i was asleep, a few distrubances in room next door due to an ill man and noises at nurses desk. But that was me till 7am!

Thurs 18th

Got woken up with a nurse asking if i wanted breakfast. I decided rice crispies and cup of tea. Rice crispies didnt have sugar on and u cant eat them with no sugar lol and the tea wasnt pleasant. I watched a movie on tv "Wnderlust" with jennifer aniston is real funny!! I went and got dressed at 8.30am, packed some of my case,put make-up on and waited on my mum and dad. Just after 9am the physios came to do walk test. Around 5th minute i started to feel dizzy and asked to stop oxygen level around 80% dizziness lack of oxygen to body. I stood for bout 20seconds then finished rest, Lowest oxygen level was 79% they said last time im sure it was 74%. When i got back i thought to myself i dont think im gonna get my blood gases test. Which is when they take blood from your artery. It measures the level of oxygen/carbon dioxide coming from your heart which is fresh unused blood going to feed your organs/body. If the oxygen is low it tells doctors that my organs are under strain starving themselves of oxygen. The last time i was at the hospital was my first time getting it. My blog before explains my experience saying i got really upset scared and it turned out to be ok. People say it feels like its on your bone/you feel it pulsate because its right above nerves. So i thought this time i wouldnt be so lucky to feel nothing. So i was hoping they wouldnt forget i needed it or not need to do it lol. But doctor came in "Hi lisa, here to do blood gases unfortunetly" So i started rambling on saying last time i worked myself up and it made my artery be more easy to find, so im going to get worked up i told her on purpose and before i could stop talking i said....IM WORKED UP! haha! She said it will be ok we used to practice on each other as students, but i used to get drunk before it. I asked if that was to help thin her blood and that would make it easier to find a vein? and she said "No, it was so it was less painful :O" Aww great i said thanks, that makes me not worry as much haha! So she went in for the blood lol and got it straight away the syringe filled up and it was done. Holding swab over it i could feel pain kinda like a dead arm pain shooting pain going all the way up, bare able but just because of the nerves underneath. Soon after my mum and dad arrived i filled them in on my night and morning as did they. Now it was just time to sit and wait for Team to arrive. The arrived and said Lisa we have good news we would like to see in 3months as you have good results they are slightly better than before. They explained why they want to see me so often, so that they can paint a graph of how i am over a period and try to predict when i will get in the "window of opportunity to be listed" plus it is best the keep a close eye on me so they dont miss anything and can be best prepared for transplant as possible knowing my body inside out. So with a smile on our faces we left, i must be doing something right!! Looking after myself the best i can and doing as i am told deffinetly helps! And having good support!

So my plan this trip was to visit outside of the Geordie Shore house haha! Turns out it was where they filmed the 1st series. Was a bit fun added to a serious trip. We went into this bar/pub next door and a waitress came over and said "Im sorry....we dont allow kids in here"! I said sharply "Im 22 next month, throwing my ID at her" she couldnt appologise more then said there was an hour wait on food. Well that was enough of that place haha! I will always look young haha! Instead we headed to a Frankie and Bennys, i asked for a cocktail with ID in hand, as i gave him it my mum said "I bet she is older than you" to the waiter and he laughed and said "Yeah she is!" LOL! Then it was just a 3hour trip home! :) On the plus side i didnt cry this time :P 

Until the next time!!