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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