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!! 

Assessment tomorrow!

Well its that time again tomorrow. Leaving at 7am for newcastle freemans hospital. Only one night stay this time but the same number of tests to be done. Then Thurs morning is the verdict. Will i see them again for another assessment in 3months or will they tell me i dont have long left with my own lungs ansd to be listed for transplant is the best option. Think i would like them to say my own lungs are doing my proud. But only the team knows best.
Well i'll let you know the verdict once i get home :)

Another letter

Got another appointment letter through this week. October 17th is next transplant meeting only a one night stay this time. The might send me away for another 3 months or they might put me on waiting list. Only time will tell!

Feel like posting today.
Iv just woken up and had a great 10 hours sleep. And i feel great just looked in the mirror and gave a big smile. I get butterflies now and again not that there is necessarily something happening just because im happy im alive and kicking. Think today i will get into some housework. You might think why spend a day doing that but to be honest when you are well and know that you are ABLE to that alone gives you a great feeling!!

Home from Transplant assessment

I will talk you through from leaving to head to Newcastle freemans hospital, the process and the outcome.


I left my house around 2.30pm on Sunday the 24th of June. My mum and dad picked me up,suitcase in the car ready to go. It was a 3 hour journey down in the car that consisted of my dad in control of the radio it being radio2 (oldies station) lol and also a stop at MacDonald s. We arrived at hotel called The Osborne hotel on Osborne Road. It seemed lovely, i had a single room my mum and dad had a double room. We had traveled down the night before so we didnt have to leave real early on the Monday. My room seemed clean just a bit cold. My mum and dads well it stunk from the kitchen below so they had to get moved. There new rooms bed you could feel every spring, the towels were old, the bathroom was moldy it was pretty much minging lol it was 2star.In the end they stayed there 2 nights and moved to the New Jesmond hotel which was only £5 dearer a night, it had just been refurbished, brand new everything, very modern,flat screen TV on wall,a wet-room with sensor taps etc much better so if you are looking for a hotel in Newcastle i recommend that one. We went down for dinner to the restaurant that was attached to the hotel and my mum decided to say so how you feeling bout tomorrow and i started crying and i was like "MUM , this isnt the time or place" was getting myself worked up and stressed and the tears were just ready to come. After dinner went through to lounge to watch England - Italy game. During extra time i went up to my mum and dads room to do my nebuliser and they would come up shortly. When they came i started to talk about the next day and how i felt this time not getting upset. I went to bed and had a rubbish sleep someone upstairs was banging about and the room was FREEZING no exaggeration.

Mon 25th June

I got up, alarm set for 9am and went through to see my mum n dad and to complain bout my sleep lol. Then went back through and had shower. All this time im thinking oh god oh god, you know that way where your standing in a roller coaster queue and you just want to turn round but you know you've been standing in the line for too long and its to late thats kinda how i felt. Like to stop my heart from racing i just wanted to say nope i cant go through this assessment. So we left and when walking from carpark to the main entrance of the hospital i started to boke lol i do this through nerves. So i stopped for a bit then continued on until reaching the entrance of the ward 29. I turned round and faced my mum and dad and said omg im freaking out and started to cry. A little cuddle and a reassurance i made my way in. I went to the nurses desk where i was marked in on the computer and given a ID band. I was told to wait in the day room until a room was available. We waited for roughly 3 hours watching this morning/loose woman. I was sent for my first test i had an xray and E.C.G which is where the put sticker over your body and it measures the electrical activity of the heart. It was a porter who took me down in a wheelchair and i struggled to understand his broad geordie accent. Back in my room my transplant co-ordinator (Hazel) introduced herself. She went through the itinerary for the next few days. She also asked me if i knew the risks invovled. I said yeah infection and rejection is the main causes of death after transplant. And i said to her over the past 18months i have been trying to find out as much as possible to prepare myself. She also asked what i was hoping for the decision to be at the end of assessment i,e if i wanted put on active list or if i wasnt ready. I said after the team have looked at my results and if they agree to put me on list i will feel anxious but i will trust their judgement. She spoke about how it is important to being put on the waiting list at the correct time known as the "window of opportunity" and she draw a diagram.

This is what it looked like and straight to the point she said we have to find out where you are on this slope. The best time to put someone on the transplant waiting list is in the circle "the window of opportunity" as this is when your lungs are failing but the rest of your body/organs are good. If your lungs were to weak and you were closer to death the chance of you surviving transplant is lessened or even getting a transplant at all as the average wait on lungs is 18months. If we put you on the list before the circle you may have a few years left with your failing lungs and giving you a transplant could have complications and you could die sooner rather than waiting. So really placing me on the list has to be at the best possible time to ensure higher survival rate.

When finding lungs suitable to you they have to be the same blood type,tissue type and size for your body and with their being a lot of people waiting for lungs and very litter organ donors finding the correct match for you can take some time. Thats why leaving it till you are very ill is not the safest option.

Hazel then left me a booklet to read and said i will see you again tomorrow.

I then had a doctor come in and go over some questions about my illness history and listen to my chest. Another doctor then came in to do blood test. She filled up 10 bottles of blood roughly 5mls in each bottle. It took her 3 goes until she got a vein to give blood typical for me as my veins have been used many times. The next blood test that i had is called "blood gases" which i havent had done since i was very little so i couldnt remember what it was like. During this blood test they go into an artery rather than a vien and it tests fresh blood to see how much oxygen is in it to understand how much oxygen is reaching organs. So they have to feel for your pulse in your wrist and i had been told you can feel the pulse go through the needle and it feels like its hitting a nerve so i got myself all worked up and began to cry because of the unknown. The doctor suggested that she would come back and do it tomorrow when my mum and dad were here as they had not long gone back to hotel. I said no just go for it, it didnt help my whole body was shaking with nerves haha. She put the needle in, in an upright position rather than when taking normal bloods the needle slides flat along the skin. The syringe filled up and she took it out and i said i felt nothing i was so relieved lol. She said because i was nervous my pulse was a lot quicker which made it easier to feel my pulse and know where the artery was hehe. So i done my nebuliser, took my medications and put my over night feed on and went to sleep around 12am.

Tues 26th June

Woken up at 7am with woman coming in to change jug of water, then another to do my blood pressure which im surprised it wasnt high from been peed off at woken at that time lol. Then a cleaner into empty bins. Then breakfast came in. My mum and dad came about 11am. We sat and chatted and then my lunch came.Around 1pm the physios came to take me to do a 6minute walking test. This involved me walking up and down a corridor with a machine attached to my finger to test my heart rate and oxygen level. At every minute one physio would tell the other what my levels were at.After 1minute my oxygen levels were 83% it wasnt until the 5th minute i started to feel out of breath and by this my oxygen level was 73% at 6minutes when i stopped they were at 76%. I got my breath back then headed back to the ward. If this was any other person whos oxygen levels had dropped to that they would have blue lips and probably passed out but because i have breathed like this for 21 years my body has became used to it. On the downside my heart rate increases which can put strain on my heart as it tries to compensate for my lungs working poorly. I returned to my room and my transplant co-ordinator (Hazel) was there with my mum and dad. She asked if i had any questions regarding the book she had gave me yesterday, i had a few random questions which she had never had before but she tried her best to answer. She then started to talk about what would happen if they called me to say they had lungs. She explained i would either make my own way down if possible or get an ambulance. The lungs would travel to freemans hospital and would be tested and checked to see if they were healthy enough i,e not infected. When arriving at hospital i would have tests done on myself to make sure i was fit as possible to lessen the risks. I would also be showered with special soap and shaved around my torso area. If the lungs were ok to go ahead i would then go to theater. She then said she would then look after my mum and dad while i was being operated. This made me cry which set my mum and dad off too. Thats my only real concern for me, is that they will be ok. The way i see it is when im sedated and say something went wrong and i passed away i would not know. She then explained briefly how the operation is carried out, that i will have chest drains put in, a line in my jugular vein in my neck etc all of which i had already found out. She then spoke about being in ICU and being brought round that i will have a tube down my throat into my chest helping me to breath. She said peoples first reaction is to pull it out but you have to stay awake for a couple hours with this in until they think you are managing to breathe on your own. This scares me a bit because i am someone to panic with things like that but if i do freak out they would just sedated me again haha. There was a chap at the door and it was a porter to take me to get an ultrasound (which is jelly on the stomach area to check my kidneys,liver and spleen, pretty much the same as a scan for a baby)  All these other organs have to be fairly healthy as this will help with recovery after transplant. Then i came back and Hazel started to discuss types of donors. Saying that i can have a choice what kind of lungs i get for example : if lungs have came from a smoker, now if they were from a smoker the specialists could tell this but the lungs could still be A LOT more healthier/cleaner than mine. They wouldnt offer me lungs that were from someone who smokes 40 a day but say a set of lungs that are from someone who just smokes when they are having a drink, i can choose if i would want these or not. I can choose if i would like someone who is pronounced brain dead from a brain tumour because with a brain tumour if it is at a certain side it cannot spread cancer to other organs. So i will get a ticky sheet that says all this different scenarios and i choose yes/no for where lungs come from. Which means that if there are donors lungs that say has sadly passed away and it is from brain cancer and i had choose "no" to accepting these the hospital would not phone me up to come down to Newcastle for transplant. This can be a problem because there are shortage of organ donors already and lungs have to meet my blood type, tissue type and the same size as mine which can be hard to get so if i tick a box i could potentially be ruling out more chances of getting new lungs which there is a high percentage of people who die on the waiting list. Hazel left and we were so tired my mum,dad and I had a nap for a couple hours before dinner.  Instead of hospital meal we ordered in a domino's hehe. My mum and dad soon after went back to hotel. Then i done my nebulisers and put my over night feed on and went to bed ready for the next day.

Wed 27th June


I was woken up this morning by a porter sticking his head round the door saying im here to take you for your lung function tests and Echo. I said give me a minute i ran into the toilet. Put my housecoat on, brushed my hair then sprayed a bit of perfume lol you never know who you are going to meet haha. First i had my Echo done which is jelly on the heart area (like a scan for baby) during this i have to have no tshirt or bra on it could be a bit uncomfortable if its your first time but iv been having these tests since i was little plus it is always a female doing it so its not to bad.  I then waiting in the lung function waiting room. A guy called me and told me the first test was in the box. Here is a picture to help you understand :

So i sit in there and do a normal breathing test that i do in edinburgh hospital that is normally on a hand held machine but this £30,000 machine can do loads of tests on the lungs. So i breathe in normally then blow out as fast/hard as i can. This tells them lung capacity which is roughly 20%. People post transplant can reach 100%+ capacity which i cant even imagine how amazing that feels. While i was doing these test the guy had to female students in to observe. The next test involved him closing the door and speaking through a mic so i could here him. This time i had to take a breathe through a mouthpiece again in and a slow breath out then when breathing back in the machine would shut my airways off and i had to hold my breath for a few seconds ( not easy when your lungs r crap lol). I had to do this a couple times. The next test the door was shut again and i had to breath normally with my hands on my cheeks then the machine would put on a resistance and i would have to pant breathing in and out through the mouthpiece.I reapeated this a few times. By this time i was sweating the room/box was so hot so i came out and sat on chair to do the rest of the tests. This was a hand held machine which was to test the muscles around my lungs. He said this time i have to hold my mouth around the mouthpiece because it is narrow and blow out as hard as i can. I began this and as i started to blow out my mouth made a farting sound.....well i could not stop laughin neither could the guy or the students this only made me feel hotter. I had to pull myself together and it another couple times. The next time i had to breathe in as hard as i could on the device and THIS TIME i snorted OMG i was in stitches and every time after that, that i brought the mouthpiece up to do it again is started laughing. But i managed to finish it. He said it gets better, i was like oh no what now. He showed me this other hand held device with a wire attached to what can only be described as a blue plastic tampon looking thing. He said guess where you have to stick that... i said i dont know? He said up your nose, this tests how hard you can sniff. The though of this sent me in fits of laughter again. Everyone in the waiting area would have been wondering what the hilarity was. Anyway after loads of laughin i managed that too lol. I got back to my room and had a shower. Then my mum and dad came. The social worker came in to speak to us. She discussed how we felt about this all, my home life etc. A couple times during this chat we got a bit upset. When she was still in the room one of my transplant consultants came in to chat to me. He was very nice but straight to the point saying having a transplant is not a cure and it is very risky. We have patients downstairs who are recovery really well and we have patients who are very ill and not coping after transplant. He also asked what i am hope their decision is tomorrow. And again i said what ever decision you come to i will trust you on that it is the right one. As i know you still have to look at all my test results and predict where i am in the graph. If you said i was being put on the list i would be anxious but i would know it is for the right reasons. He said i will see you tomorrow around 12.30pm. He also told me that Hazel wouldnt be able to see me today as she was preparing someone who was about to go into theater for transplant. That was quite a strange feeling to know that, that down stairs in theater it was happening. We decided to go out for dinner that night to a pub along the road from my mum and dads hotel. But by 4.30pm i was exhausted from the test being woken up at 9.30am and all the information i was trying to digest. I didnt order anything i just picked at my mum and dads chips. My mum and dad dropped me off at the ward with some crisps and sweets where i done the same nightly routine then went to sleep around 12.30am.

Thurs 28th June


I woke up at roughly 10.30am not that i had had a great sleep between 7am until then because people coming in and out Grrr!! My mum and dad arrived back of 11am. Hazel popped her head in and said we will be about 12.30pm we have another 3people to see too. She also told us she got home at 1am last night after finishing helping with transplant and was back in at 9am. Offt!! I had some lunch in my room then we waited and waited. And my mum and dad asked if i was nervous and i wasnt really, well i didnt feel it anyway. I really wasnt sure what they were gonna say a yes no or maybe. The team came to the door and stood around my bed ( it was like dragons den) my consultant said we have had a long discussion bout you as your lungs are really poor but you still manage to get out and about. We would like to see you in 3months again for one night to do some more test and to see how you have been and then we might place you on the list we might not. He shook all of hands and left. Hazel said you can have a cry now if you like. And i did start to but i think it was a bit of a relief that my lungs might keep me going for a bit longer. And hazel said i will send you a letter out for to see you in 3months.He also said we arent going to pussy foot about but there are people downstairs who are doing really well after the Op and there are people who are not. But Lisa you are a positive person so keep that up! My suitcase was already packed so up we got and headed for the car lol. Was so looking forward to getting home and seeing my cat. I was completely exhausted. Throughout this week though my mum dad and i stuck together and we did manage to have a laugh the usual slagging eachother and stuff lol. It wasnt all that bad :)

If you have any questions feel free to comment at the bottom or PM me on facebook. Or let me know spelling mistakes,grammer errors :P

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