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 ;)