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!!!
