Call for lungs that didnt go ahead

I had just finished seeing a terrific show at the fringe. It was a dancing acrobat choreography telling a story of a group of people escaping danger called "Traces".
My friend Lindsey and I decided to nip for a coffee before seeing the next show "Rat Pack". As i got my latte i wheeled my chair over to a table and noticed by phone had no signal. In that instance i normally dont stress too much as i know if the hospital couldn't get a hold of me they would call my mum. Then my mum would call my friend i am with and also the fact i was only going to be in coffee shop for less than half an hour. However i decided to turn my phone off and back on to see if i gained signal. When i turned the phone back on i received a text to say i had had a missed call the minute before i turned phone off and whilst the phone was off. so i decided to call the mobile number. To which my transplant co-ordinator said hello Lisa. It was 7.40pm at night...she never calls at night. Only ever sometimes in afternoon to ask how i am doing. I thought is this it? She said "Lisa how are you?" i said "im ok" she said "i am phoning to say we have an offer for you!" I looked at Lindsey and began to cry, i couldnt speak. she said "lisa are you there can you hear me?" I said "yes" she said "its ok you are just in shock" She then asked where was i. I explained i was at the Edinburgh festival she was pleased at this as this meant i was closer to Newcastle than if i had of been at home. She told me to make my way to princes street and an ambulance would be there within 20mins.
It was all so surreal hurling down a busy festival street in my scooter. i was crying hysterically and saying in my mind "this is it happening" asking tourists to EXCUSE ME!!! i phoned my mum to tell her to get our cases together and that a friend would come pick her up. The plan was always that my mum go in the ambulance with me however i didnt really think about if i wasnt at home when i got the call that i would have to go in ambulance with whoever i was with. Whilst making phonecalls everyone I spoke to was in shock and it didnt seem real. We were at the road side waiting on the ambulance and once it arrived we climbed in.
Throughout the journey a couple of my friends phoned me and told me they were going to head down to newcastle to see me before i went to surgery. In the ambulance i cried on and off and was just trying to talk the whole process through in my head. I also began to shake with nerves then i was sick. I realised my friend and I were quite stressed so i suggested we sing a song. My friend asked what  song and i said "you choose" she started singing Koombya. The laughter soon then became tears again.

Spur of the moment i decided to post a video to my own facebook page and my public page called "Lisa Hertwig Transplant Tales". It was just a 30second video of me in the ambulance saying i had had a call and i was on my way to freeman hospital. Within minutes my phone had went crazy over 30 texts and the notifications were going crazy. I decided to stop the notification alerts on my phone as i was trying to stay calm and focused. The reason i made the video was to capture the current situation and that there is a lot of people close to myself and family that i knew it was the easiest way to let people know. The ambulance driver was called Robin which i thought was signification as i have a robin tattoo on my neck and my gran loved them.

Arriving at the hospital at 10.30pm i got blood tests weight taken, oxygen/heart rate, temperature checked. My temperature was on the slight high side , i thought it was down to the amount of blankets wrapped round me in the ambulance but that could have been a sign of infection. If i had infection they wouldnt have given me the transplant. I then got examined by the surgeon. I also had to do a urine test and a swab test of my nose and throat. As i am thinking here...i think i got a ECG (scan of my heart) but for some reason my mind seems blank. I also then went to get an xray. On my way back from xray i seen my friend and her fiance had arrived. We sat in the relatives room and chatted. Next to arrive was my mum , brother and friend. Everyone was quite emotional but i was fairly calm. The nurse then came in and said "Lisa id like you to have a shower and get washed with this special soap and put this gown on" So my mum came with me and i got gowned up.

I began to cry with my mum saying i was very scared. I know a transplant can save my life and possibly give me more years of my life. However i am fully aware of the risks that involve a transplant. Many complications , one being never waking up from operation and managing to breathe on your own. I was beginning to think what happens if i never see my family and friends again. Some people always see transplant as amazing but don't always know the bad stories and at the time they were ruling my mind. But my mum reassured me things would be ok. She then left the room and told my brother to come up for a chat. We shared some good conversations about how much we loved one another and how proud we are of eachother. His strength blew me away to be honest. Next my 2 friends came in. Again i was speaking as if i was never going to see them, saying things i feel they should hear and allowing them to say whatever they would like. Which again was very emotional. Some people may think i was being very pessimistic about the operation but i see it more as realistic and that i wouldnt have wanted to regret ever not saying important things to them. My plan was to allow everyone to quickly see me before the surgery. Then the nurse and my mum came to the door so my friends left.

At 2am My co-ordinator then told me that unfortunately the transplant wasnt to go ahead.The transplant team had looked at the lungs and had found emphysema disease on them. There would be no point taking out my diseased lungs to replace with another type of disease. My body would also be more likely to reject those organs. I think my first initial reaction was SHIT i have to go through this crazy 4hrs of getting a call and being so emotional again. You know that way where you just want it over and done with and the fear to go like pulling off a plaster. But then i got a feeling that a weight had been lifted that i wasnt about to have my body cut open and at risk of so many things going wrong and that i can spend more time with my friends and family. (even though in reality i probably dont have long left with my own lungs)

So i went back to the relatives room where i had 6 members of my friends and family waiting. I shared the news with them. I then said "I am ok about it though" as i knew from their reaction they were gutted for me. A nurse then came in asking if i wanted anything to eat as i had been fasting for 6hours. I asked for cereal and toast and a glass of milk.I was also then aware that my bum was showing from still wearing the theatre gown as i hadnt had it tied up at the back yet. So i said "iv washed my body and hair with that minging sterile soap for nothing" and my brother said "well at least your clean" and he was right at least i was clean but more importantly i had so many people there to support me so things really werent that bad. I dont think i would have been so calm and level minded if it wasnt for the people there. Each one of them took out there time,jobs and money to be there to help me. I never asked them to they just did it. I told them they could all go home/to hotel and i would catch up with them soon. I couldn't believe how much people back home was taking about it and sending their love it was crazy. I am so fortunate to know so many amazing people. I can't thank them enough!!

 It was now 2.30am and i was exhausted. I updated my facebook status to let other know the news. My friends also told me that all there phones hadnt stopped going off of people asking for updates and to send their wishes. I have had close friends of mine go through transplant and i know what it feels like not knowing whats happening and hoping they make it through the operation. So i empathised fully with how they felt and i tried my best to explain and stay calm for them.


I then had about four hours sleep and we left to get the train the next day at 4pm after i had seen my consultant. He said he hopes to see me back soon for a transplant as he would love to be my consultant after the transplant. And i hope so too.

I was very emotional on train journey home but i think that was mostly from exhaustion. I then tried to work out how i felt and what this experience meant to me. I came to the conclusion that had the transplant not went ahead because i was ill then i would have felt differently. More upset etc. blaming myself. However this was nothing down to me or my doing. That day i got the call i feel i was no closer to getting my transplant than i was the day before as the lungs werent right anyway. I have always known that you are more likely to get a false call for a transplant than it to go ahead. The reason being because the organs still have to be inspected and could possibly not be suitable or not go ahead because you are unwell. So in a way i did expect them to say it wasnt 100% going ahead i always have known that and i have seen it happen to friends of mine. I also took a lot of time that evening and next day thinking about the family who lost a loved one and had selflessly offered to donate their organs. I thank them for that!!!!


So where am i now i hear you ask. I know i am still on the urgent waiting list being more of a priority. I am still going to do all i can to ensure i am well and stay away from infections and viruses. I am going to continue enjoying what life has to offer and enoying company with the people that are in my life. Last weekend i was at creamfields in England and had a ball as always. 

If you would donate your organs And haven't shared your wishes with your loved ones then please do.

Thank you.

6weeks of suffering

So I found myself becoming really ill at home. I was already on a course of 2week intravenous antibiotics when 11 days in I felt unwell and ended up getting a third antibiotic added to my list to take . while at home on my IVS (antibiotics via the vein)  I began to get more and more unwell. I was also very emotional. I had a high temperature, sore when I breathed and coughed, I was breathing very fast than usual, I was sleeping a lot and I wasn’t able to walk to the bathroom by myself. My mum was having to come in and make me something to eat even though I had began vomiting. I would still try and eat and drink something. My mum would then help wash me in the shower. I would just sit in the shower chair while she washed my hair. I felt like I had no energy. I began to worry…was this the end for me. I have always known with cystic fibrosis that all it takes is one final infection to kill you and to me this felt like I was dying. My mum was there putting my pyjama bottoms on and I started crying as I had been doing plenty of for the past 3-4 days and I said mum I think im dying. She just looked at me and said right lets finish getting your dressed and into bed.

I decided that my antibiotics  weren’t helping enough and that I had to be admitted to my hospital. I got up to hospital and my temperature was 39degrees. I then explained to my 2 best friends what I had said to my mum and how concerned I was with how I felt. It just didn’t feel like any other infection.

 

When my cystic fibrosis team came on shift on Monday they took a swab of my throat. I also spoke with my Psycologist saying how I was feeling. I cried more and said I am scared and I have never felt as ill as this, is this my time? She reassured me that they didnt think I was at my dying stage. The next day it came back the swab had detected flu and that would be the reason why my infection blood levels were also so high and I felt the way I did. I was relieved that I was explained why I felt so ill yet I knew the flu is still very serious for someone of my stage of a terminal illness.

 

The week I was at home before I came in with the flu  I made a video which I haven’t shown to anyone. In it I am crying and I begin to question people in life. And they do say when you are at your most vulnerable time you do think things like this. I started to question that how come when I am so ill there are certain people in my life who aren’t there for me. People who when I am well I would bend over backwards for or see on a weekly/monthly basis. Those tend to be the people that when I am ill I don’t hear from. Do they think “ah its just another infection, she will get over it” don’t they understand that I am at the end stage of my illness and that everytime I get an infection I am nearing the end of my life. If they don’t know that then why ? I surely have put things clearly and openly to them. Don’t I mean as much to them as they do to me?

 My closest friends were coming to see me and it was horrible felt like all we done was cry. I kept saying im not getting better i feel like im dying. We were all terrified. They were there to wash my hair in the shower, listen to my concerns , hold my hand and cry with me. Some people never have friends by there side at times like this and i am so appreciative of that. They had to be so strong but i felt when i cried they cried so then i could cry some more it felt like it balance out well. I wasnt my jokey self, i had nothing to joke about,  nothing to look forward to, nothing to really keep me going. I know it must have been awful for them to see my personality not coming through each time they seen me. but despite that the still came and helped me through!!  This hospital admission also brought me closer to my mum she has been there for me tremendously doing everything for me at home and even managed to drive to the hospital herself too. Seeing the worry in peoples eyes has been hard but knowing they were there to help me was the only hope i had, i had no good health, no guarantee what was happening  but i had people that bloody loved me. I love my bunch of friends and my mum so much for all they done. I felt i got closer to my dad too when he was visiting me which was nice. There were people -not a person- but people who made very little effort and i will have to try and deal with that some how.

So where am I now. I was in hospital for 19days. In that time I had started using a machine called Bipap over night. It’s a Non invasive hgventilator. Not only do my lungs struggle to process oxygen it now has trouble getting rid of the co2 (carbon dioxide) so this machine helps me take a deeper breathe and get rid of the co2. The hospital stopped my antibiotics after being on them for 4weeks. They then tried to get the correct setting on my bipap by testing blood from my artery to see if my bodys level of co2 was lower. I got home on Thursday 9^th july. They said I should come back to hospital on mon or tue to get a blood test and possible adjust settings again.

However being at home I realised how much my body had deteriorated I no longer could do anything for myself I made myself a cup of tea and that was all I could do the whole day. Friends and family were having to come in and cook for me and get me ready for bed. At night being by myself my anxiety was through the roof. When I coughed loads my oxygen level would go really low and it felt scary. I was also using this new bipap at home for the first by myself. I began to feel quite ill and confused and it could have been because my co2 level was still high which can be dangerous as it becomes like poison in your blood if it builds up. So I had to go back to hospital on the Sunday night.

My CF (cystic fibrosis )  team then had a discussion and decided that they thought I still had a chest infection and that’s why I was still very short of breathe and my co2 level was high and that the bipap wasn’t doing is job as effectively as it should be. This was a sort of relief to hear they were putting me back on IVS as it meant that possibly this wasn’t  deterioration this was just an infection they could get rid of and i might improve. HOWEVER…it did kind of annoy me that during my last hospital stay they had took me off my antibiotics which looks like they done it too early. When I look back, when they did stop I did get worse afterward but because they told me I didn’t have an infection I just thought it was because my lungs were more damaged. I could have been over this infection had they of left me on my antibiotics for longer. in turn  I would have struggled less and not have had high stress levels thinking my life was nearer its end than it actually was. Fortunately now i am home on this new antibiotic with 10 more days to go of it and it is clearing this infection up nicely. Since being home i have made myself lunch and dinner, brushed my cat, tidied up a bit things i have dreamed of doing the past few weeks.  i am  feeling a lot more like good old LISA :D

So to recap this has been the worst and most scariest hospital admission. I have been bed bound for nearly 6weeks and my body is deconditioned and weak. I don’t know if I will get back to my usual self where I am out and about all the time. My spirits have been low knowing I have been so ill and that I may never improve like I normally did after hospital stays. But lets see what this new  antibiotic continues to do for me. I may not get back to how i was but i can be sure im not going to be as bad as i was..well until the next infection :(

Self reflection

So me being me i always look deeper into everything, everyone and myself. A new years resolution for me was to try meditation mainly inspired by Russell Brand and his opinions on meditation.
I thought it would be a good thing to try as right now learning ways to relax would be beneficial to me. Waiting on a life saving operation for over 19months isnt easy.

Tonight i went along to a class with my best friend. It was how i imagined a yoga/meditation setting to be. A sofa area with tea and coffee and positive messages on the wall. shabby chic decorations along with pot plants. We went through to the other room that had heaters placed around,mood lighting and soothing music. We collected our mats, blankets and pillows and got ready. I knew i wouldnt have been able to take deep breathes in like the woman would tell everyone to do but i planned on doing as slow and controlled breathes that the 13% of my working lungs would allow me.

The woman turned off the music and began to tell us to sit comfortably and close our eyes. We began to breathe in and out and become aware of all of our body. Then the woman got us to think positive things about ourselves. She would say things such as "i am a valuable person, people make mistakes, i am strong, picture great memories in your mind" she spoke calmly and softly. There was  Something she said that during it i could feel a strong over whelming emotion to which i began to cry with my eyes closed. I always believe it is very important to acknowledge emotions and to deal with them whether they are positive or negative. Some of the things she said is already a way of my thinking even previous to going to the session. At the end of the meditation she did say if during the session you feel yourself becoming upset that is ok. Whatever emotion you feel during meditation go with it and acknowledge it.  She must have seen me whilst doing the class.

On my drive home i began to think. (one of my fav places to think) . What did i hope to get from attending this new class? I thought if i learn to be a more relaxed person i could be a better person. I realised i am always striving to be a BETTER person. I am not the BEST person far from it however i do want to treat others as i wish to be treated and if i am calm, understanding and a reflective person then surely i can strive to become better.

If i am to leave the earth tomorrow i would ask have i treated those around and close to me the way they deserve? Even if you or i feel  someone may deserve to have negativity thrown at them does that in all honesty make you feel better... no it makes the negativity continue and manifest and breed.

I try to spread my time as evenly as possible with the people in my life. they all deserve a piece of lisa time ;) I may not squeeze them all in my busy, tiring life style as easily as i would like but i do try. I am very ill but the way i push myself to give people my time is crazy. My health team often say "Lisa we dont know how you do it!" When i say give them my time i dont mean that in a....full of myself kind of way. I mean....if I die those are the people who will keep memories of me with them forever and those memories wont get created by themselves. So with every ounce of energy i have i make them happen. If memories of us together gives them comfort when i am gone then that is what i have to offer. Plus they are making my days worth living and giving me fulfilment in life which they might not fully know how much it means to me. If i didnt have those people i wouldnt have a life worth living.

Also whilst on the subject of energy, people have often said "Lisa you get about, your never in ,i wish i got up to what you do,you have some social life!" I only have that social life and go so many places that is physically possible because i make them happen. Those trips to london, meeting celebs in night clubs, lunch with friends or trips to the bingo only happen because i plan them. I fill my precious time with the people i love. People who make me laugh and help pass the time whilst i wait on these lungs. If you want those things then YOU can make them happen. Whilst watching tv or chilling in the bath, make a list.

So back on track...whilst driving the song "Something i need-Ben Haenow" came on. Which has these lyrics and i will explain how i can relate.

https://www.youtube.com/watch?x-yt-cl=85114404&v=zLBaaN2sqlc&feature=player_embedded&x-yt-ts=1422579428

I had a dream the other night
About how we only get one life
Woke me up right after two
Stayed awake and stared at you
So I wouldn't lose my mind

And I had the week that came from hell----my friends and family are the ones who really see me struggle
And yes I know that you could tell
But you're like the net under the ledge -----they are my net,my protection keeping me sane.
When I go flying off the edge
You go flying off as well --- but when i crack and have a bad day they struggle to keep it together too

And if we're only here once I wanna live with
You got something I need    -------There is someone or a family out there who i am waiting on making that decision of allowing me to have another chance at life by donating their lungs.
In this world full of people there's one loving me ---with a shortage of people donating it is just ONE i am waiting on making that decision.
And if we only live once, (hey)
I wanna live with you (you, you, you) ---- i want to live with their lungs and i will cherish and look after them
You've got something I need
In this world full of people there's one loving me
And if we're only here once, (hey)
I wanna live with you (you, you)

Last night I think I drank too much
Call it a temporary crutch
With broken words I've tried to say
Honey don't you be afraid ---dont be afraid of the wait or of the risk of the operation

If we've got nothing we got us (Yeah)
And if we're only here once I wanna live with
You got something I need
In this world full of people there's one loving me
And if we're only here once, (hey)
I wanna live with you (you, you, you)

You've got something I need
In this world full of people there's one loving me
And if we're only here once, (hey)
I wanna live with you (you, you, you)
I know that we're not the same
But I'm so damn glad that we made it
To this time, this time, around, yeah

You've got something I need
Yeah in this world full of people there's one loving me
And if we're only here once I wanna live with you (heeyy)
You've got something I need
In this world full of people there's one loving me
And if we're only here once, (hey)
I wanna live with you (you, you, you)
You've got something I need
In this world full of people there's one loving me
And if we're only here once, (hey)
I wanna live with you (you, you, you)

If we're only here once (hey) I wanna live with
If we're only here once I wanna live with you

I enjoyed my new experience tonight and trying something new. Trying  new things and enjoying them has only come with age and maturity for me. To be comfortable enough to try new things and to find enjoyment is a gift in life. I will be back to the meditation classes in the future. Namaste ;)

Forever emotional...

I thought i would write explaining how much of an emotional person i am. By emotional i mean i cry when i am happy or grateful A LOT! I always have done. Even more so recently because my health has deteriorated more. I have always been a believer in crying is a good way to cleanse the soul. My own words "Im getting my greets oot" not great grammer i know but it helps when i or someone else is crying!
     When people cry they often apologize or get embarrassed...they shouldnt. Crying is amazing its lets us know we are alive, it lets us know we have feelings it lets us know we CARE! If a family or friend begins to cry infront of me straight away i say "Its awrite let your greets oot! Let aw your greets oot!" It hurts to hold them in its not always the letting them out that hurts its right at that point where your bottom lip goes, your swallow, your throat shudders thats the awful hard part but the crying is easy and actually feels ok.

Lately i have been crying over happy things, things that if feel an overwhelming appreciation for. Like for example i was in hospital and got out for a few hours and got ben and jerrys icecream. as i tasted the first bit on the icecream cone i began to cry then i laughed then i cried some more. That icecream tasted heavenly and i felt so lucky to be tasting it. To you that might sound like the first signs of going insane  (probably is haha) but truthfully i know life can be taken from me at any minute and i treasure the smallest things that i enjoy. Until you Know your life is short you may never feel the way i feel towards things and experiences.

My second tearful time came when i got to see Billy Connolly live just the other day. As a child he was my first ever comedian i was allowed to watch. I loved how he told stories, how i became focused and drawn to them. I then grew to love his series when he traveled around the world,Australia tour, new zeland and my favourite route 66. That is why if i am lucky enough to have a transplant and be allowed to travel i would like to travel route 66. Billy captured it magically even though those diners or tourist attractions may seem minor to some they looked so appealing to me probably partly how Billy delivered it. Billy connolly makes me think of my childhood, happy christmas memories when i would receive his DVDs, trips to the carboot sale on a sunday where i would spend my pocket money on his tapes,videos and books. Or when i got my first MP3 player and i downloaded live recordings of his stand up that i could listen to in the school playground whilst laughing away to myself and knowing it word for word. I loved the fact he was a fellow celtic fan and i often seen him from afar at celtic park. So growing up i have forever been a fan as many others will be too but when i heard he was ill i kind of didnt want to make a fuss about it, I done something i never do and dismissed illness. To me Billy connolly was someone who i could escape whilst watching or listening to he made me forget about being ill and lifes worries.

Few years ago i tried to get tickets to see him but they sold out too soon. So when the opportunity came up this time i was certain i would NOT let this slip by me. This had to be ticked off my to do list. So as he walked out onto the stage through the curtain i was so shocked i could not believe he was right there. I was going to hear him tell me his stories. And i began to cry quietly. For the first 15mins i couldnt take it in not fully even listening to what he was saying. He did say when he came on "aw you are only cheering coz i am no well" haha. After that i got fully involved and was in my glory. I kept checking my phone knowing the end was nearing and he began to say his goodbyes and took a final bow. Everyone stood up and cheered and i began to cry again. I was so happy i got to see such a talented and clever man. It was a dream come true!

Its up to you how you see life....its up to you if you want to allow things to get you down but its also up to you to make a change if you are not happy...

People say life is short .... it isnt its just we waste time making the wrong choices ( Naomi MacIver)

Words to describe me.

I forgot that before i began writing my blog i had posted a status on facebook asking people to describe me with one word.
Today i had a notification via an app called Timehop that reminded me of this post. So i can finally add what people said onto my blog.
Inspirational : Liam Essex , Linzi Smith, Lindsey Wright, Lauren Norman , Leanne Walmsley, Callum Carberry , Linda Mellon
Awesome : Bill Gray
Bubbly : Kirsty Dalgleish , Jean Adams
Crazy : Stacey Hughes
Unique : Linzi Hunter , Rachel Watson
Sunshine : My Mum ( Lizzie Young)
Inspiring : Claire Drummond
Fighter : Tommy Welch
Brave : Gail Bell
Remarkable : Audrey Myychreest
Fiesty : Ross Millar
Unbelievable : Alana Taylor
Irreplaceable : Chris Palmer
Best : Michelle Dobbie
Supercalifragilisticexpialidocious : Christine Finlayson
Special : Joanne Taylor
Courageous : Margaret Blyth

My friend Anders

June 2013 i received a friends request online from a guy named Anders whom i had seen comment on various woman statuses that i speak with online who too have cystic fibrosis.

We began chatting just like i do with a lot of cystic fibrosis sufferers i meet online. Sharing our past experiences, our treatment schedules and also discovered we were both waiting on a lung transplant from freemans hospital. Anders had been put on the waiting list a couple months before i had.
Our long chats online became frequent. We realised we had A LOT in common. We realised that we had the same sense of humour as well as the same outlook and appreciation of life. Anders had a way with words which can be seen as cheeky but i soon began to realise that was just him. His choice of words were words i probably wouldnt have let anyone else away with but for some reason i found it acceptable from Anders.

We both had a love for our cats. Anders had 3 and i have one. He said he would send me pics of his cats. So we exchanged phone numbers. From then everyday we chatted via txt and an app called whats app. Sending pictures of our crazy cats.

Anders began this thing called "gift of the day" which meant he got all his fans ;) to send him gifts whether it be humorous,thoughtful, free items he didnt mind. So he asked me are you going to send me something and i thought offt do i have to haha! But then i thought this will be fun. I knew he liked the sweet shop in Stirling even though he was from Glasgow he was aware of it. So i picked a few old school fav sweets, i got a novelty pair of socks, a magnet about cats and a chocolate plaque from thortones. Once he received it in the post he posted it on facebook like he did all the others. He then said he would find things to send to me. However i was on home antibiotics but i had got more ill. We would be texting everyday and he would be making sure i was ok. Eager for me to go back to hospital to get checked out. I knew i was really ill and went in and ended up staying for a week. And that was the time i had to be put on Bipap machine ( non invasive ventilator) to help breathe for me as my lungs really werent holding up well. His texts kept me cheery whilst in hospital.
Once i got home there was a parcel waiting for me which contained gifts from Anders presents that i will hold onto dearly. Pictures below!
Anders often shared his views on transplant with me and his fears. Our fears were closely similar. I understood him so well. I understood things that frustrated him. I understood his love for life and people. I understood his love for kids. I understood his love for concerts. He said Going to a concert is one of the things i can still do that cystic fibrosis cant get in the way. And the buzz from the crowd and atmosphere made him feel alive. So we would chat for hours about concerts we had been to.

So basically after texting for a few months we began skyping (video chatting). It was one of the first calls that Anders asked what was behind me on my wall. And i explained i had only had it up since April and it is Bob Marley Lyrics " Dont worry about a thing , coz every little thing is gonna be alright" and he was like Lisa i lost a friend called Clare with CF (cystic fibrosis) back in April who i cared a lot about and she was also waiting on a transplant. And at her funeral was that song, how freaky is that! Talking about our thoughts on death and funerals became a frequent thing. It was one night he shared songs with me one being what was at his friend Clare which is called 'Long live the queen'



Whilst i listened to this i cried on skype to Anders and i said "Anders this is so me". I now want this at my funeral and he said i thought you would like it.
There was another night on skype and he asked if i collected anything and i said yeah Cows. He then in shock went no way!! He explained that Clares mum collected Cows and after she passed away he met Clares mum and gave her a new cow to add to her collection whilst telling her how much Clare meant to him.
Together we both began to think his friend Clare had brought us together, there were too many things that made us think this. He said he found it really difficult after she passed and it was as if i helped fill that gap and provide him what Clare once did. This will forever comfort me.
Anders and i would send another couple things in the post, he sent a homemade CD, i sent to him Plop top trumps (pictures below) and he also sent me a elf xmas hat. These things i will cherish. Anders once chose to write about me in one of his blog posts in which he just complete rips into me haha slagging me like he normally done :P.

 http://gibboswondrousworld.blogspot.co.uk/2013/11/whats-alternative-comedy.html

The above link is what he had written the day after my birthday. As you can see from this he was a very intellegent and funny guy. Feel free to read his other blog posts.

Anders also was a stand up comedian which he would do stand up in small comedy clubs in glasgow. I only ever got to see a short clip on him on stage via facebook. Comedy is something i love, i have seen a huge variety of comedians and have went to local comedy clubs. I was fascinated in his comedy work and the way he told stories would have me in fits of laughter which ended up in a coughing fit helping to clear my chest which was also good. Often on skype we would both do our intravenous antibiotics. Doing this at home alone can be very draining and reminds you of how sick you are, but chatting to one another whilst we done this took those negative thoughts away.
Another thing Anders and I had in common was our love for football. He knew i was a Celtic fan and i would often slag him for supporting Partick Thistle. We would watch match of the day at the same time and text eachother about what we watched. We both loved the atmosphere at football and how you can forget about everything whilst you are cheering on your team. We also would discuss how sometimes our health stopped us from going to football games especially in the cold weather.

Anders sadly passed away on the 19th of May which was 6weeks after he received his double lung transplant. His new lungs would not begin to work on their own and Anders body became weak. This is something we both new was a possibility but to be honest i never thought it would. Anders had to much to live for whether it have been charity work, his friends and family or his comedy. I did want to go to Newcastle to meet him and say not only a goodbye but a hello. However i did not want to take away the time his family had left with him. This has not put me off transplant as i know these things are possible and i know Anders knows how important taking this chance is. For taking this chance he was courageous and strong just like a tiger.

You are maybe wondering why i have never mentioned a time that we met. That is because we never got to. When you have CF you arent allowed to mix with others with  CF as we carry harmful infections in our lungs that to an normal person wouldnt do any harm but to another CF person can be fetal. So we often spoke about the future, that once we both had health new lungs we would THEN be able to meet. I will never ever ever get over the fact i never got to meet Anders in person HOWEVER i will be forever grateful that he was my friend and for everything he gave me! His spirit, his giggle , his charisma will forever live on in my heart. People say never live with regret but i do have a regret that i never told Anders i loved him. I hope he knew how much he meant to me.

Today there was memorial held in Glasgow to remember Anders. His family religion is Quaker so this service was different than what i have ever attended. Children were welcome and bright colours were to be worn. The memorial started with a friend with a guitar...she began to sing "Long live the Queen" the song i mentioned above. I began to cry. But as i did i mouthed along the words. During the memorial people stood up with a mic and shared memories of Anders and what he meant to them. They were all beautiful and touching. Between each person chatting there was then a few minutes silence of remembrance. Also what i found comforting was at the end of the memorial to signify the end people around you shake each others hands and hug one another. One man who stood up and spoke then played a piece of music which had no songs just a lovely melody. During this Anders neice and nephews stood in the Isle of church throwing their soft teddies into the air along were dancing. This was unplanned as they are only little and to see this during such a sad but happy time was amazing! I know Anders would have loved the turn out, the contributions and the lovely words.

The game i sent Anders, we managed to play it together on video chat.He often chatted about poo which was my reasoning for this gift.

The gifts Anders sent me i love drinking my morning cuppa out of my celtic mug.

Anders often liked to get his face painted as a tiger. So a week after his passing i decided for the first time in over 10 years i would get my face painted in memory of him.

Anders telling me he didnt have a shit after he hung up the phone from me haha,before going for his first call for transplant.

The first call Anders called me to say what was happening. The "thanks for being there" i will always remember.

Another time we discussed our future meeting.

One of our plans of meeting after transplant :(

We feel Clare brought Anders and I together he was my transplant waiting buddy. I now will get those lungs for him.

The list of songs in the CD Anders sent me that i will listen to in my car forever more.

The first time Anders got his call for lungs which unfortunately never went ahead.

Another time Anders and I discussed meeting one day.

The gifts i bought Anders minus the sweets.

At a stand still.

This isnt attention seeking this is solely just me airing my thoughts.

My good friend Anders has just received his double lung transplant which means i am one step closer in meeting him. I am not allowed (not supposed to) to meet others with Cystic fibrosis or people who have had transplant until i have had mine as my lungs hold bad bugs that can be harmful to them. So all thats left now is for me to receive my lungs so i can mix with my friends that i chat with over the internet.

However lately i have been feeling a bit pissed off and frustrated at this waiting on lungs Never thought i would say that but i cannot plan my life, i cannot do things i want to do or achieve things i want. I feel stuck. People out there have their whole life ahead of them. I am never envious of others however i am sometimes disheartened at my own situation. They can go holidays, have children, can apply for courses colleges or even universities ...whatever they please as the world is their oyster. For me i cannot and its started to feel like a monkey on my back.

Yes i claim benefits, get a car and a flat but thats not what i want..... i am trapped nothing else just burdened with the fact thats all i have material things. Thats not what i long for.... i desire memories, love, future, to travel the world, gain experiences, reach goals and achievements!! Material things are nothing. They are just there during my existence, they are not there to complete my being.

I want to work. I want to have a job where i am helping others and not only get paid but gain satisfaction. To know i have earned my bank balance. To say well i can do this for X amount of months then I will move onto that. To work towards something is an INCREDIBLE opportunity whatever shape or form it may be. I want that option.

Whilst i am Facebook mainly i see peoples achievements whether it be loosing weight, to stop smoking, starting college, raising their children and teaching them new life skills, doing walks/runs for charity. I feel overly proud for them for 2 reasons.....1) that they have been granted the opportunity in the first place and have resources to do so and 2) they TOOK the opportunity!


Is it really greedy for me to ask for more....is it really ungrateful for you to not aim higher?