Organs in need.

We never actually think about it do we ? the fact that one day we might need a transplant. It only happens to someone else.

Since my time on ward 727, I have had the pleasure to meet some wonderful long stay patients, like myself.(I’m not calling myself wonderful). In particular those waiting here for organs. Life or death.

Your liver. A wonderful thing. Fighting infections and illness everyday and cleansing your body of toxins, until it just stops. You have kept yourself well all your life, kept healthy and fit and then that’s that. How foolish I was to think that failure is only down to alcohol or drug misuse, such an uneducated understanding. No, there are one hundred different types of liver disease and most of them you can’t control, they just happen. Eye Opener.

Why am I talking about Organs? When I’m here being treated for crohns? God I wish bowel transplant had been invented that would solve a lot of problems. Well, it’s an education that has been thrust upon me since I have been here that I feel so strongly about and compelled to write about. Sharing a gastro intestinal ward with liver I realise as we all get up for work everyday, eat our breakfast and do the usual routine, that we are all so naïve to the fragility of life. Organ transplant waiting is real, the list is real. Every day, so many waiting and fighting. Would you donate your own organs?

Dave. My ward friend has been here the same duration as me. Dave is a legend from Warrington, loves Liverpool FC and has great minions pyjamas. He is so positive and kind. A true fighter. We shared the funniest experience about four nights ago, (that at the time I knew nothing about, or had kind of forgot in a daze, that I was reminded of yesterday)

2 am, the ward visitor lounge on ward 727. I had desperate insomnia, really bad night, over tired, pregnancy hormones probably, teary and panicking for the fourth night in a row that I could not sleep. My eyes were stinging, my head was pounding and twitching, I just could not rest. The hydrocortisone whirl would not leave me be. Sleeping pills are awful when you are so anxious, all you want them to do is work and float you off to sleepy byes without a care in the world, but they don’t work like that when you are desperate because you wait for it, expect it to happen so you build yourself up and because you are fighting it you panic, it doesn’t come so then you panic some more and then the dread sets in, I haven’t taken enough, or in my case, hysteria, they have failed.

So, instead of sitting in my side room, alone, upset, crying out with the ‘why me’ situation, feeling very low and sorry for myself in the dark night, me,  bump and blankie took ourselves off to sit in the room full of odd NHS chairs and sofas to sit by the nurses station, feel part of something, the night shift team, instead of being alone. A cup of hot peppermint tea and the TV should do, not forgetting the good old ginger biscuits for my iron and energy. Forty minutes into my set up, I must have drifted off, the Made In Chelsea programme I was watching was nearly finished and I had not got a clue what had happened so I figured my mind had been somewhere else, asleep. (Please don’t judge me on my choice of programme it is an integral part of my life.) Hurrah, I’ll take those sweet forty minutes ! I woke up dribbling on the arm of the chair with the laptop glaring at me and my eyes now really heavy and spacey. I look around the room full of odd chairs and this strange shadow was in the corner, I couldn’t make him out a first but he was looking more agitated than I did an hour ago. Poor thing, I knew Dave as we had met already, but I was so out of it that night I can’t actually remember our conversations very well, must have been wild, poor Dave. We saved each other that night with company, me and my drug induced insomnia, Dave and his liver, driven mad by his itching all over. That’s what livers do when they don’t work, you itch like crazy apparently, all the toxins cannot be removed from your body so you are fixated on an itch for hours. We should have named ourselves, the itchy and scratchy show come to think of it, what a sorry sight.

Dave is waiting, waiting for his life to be changed. Waiting for someone to give up the ghost so he can have the gift of life and freedom again. Dave has no concept of time, date, when or where, waiting is all he can do. three weeks, three months, who controls the list? no one, its fate. Can you even imagine having that problem. I can’t, just mission keep the liver working until the phone rings on the ward.

Dave decided to get married in hospital last week. Him and his partner went for it, legend. I’m secretly gutted I didn’t know them before, I love a good wedding and that would have been really fun to attend in my headspace ! Well to be honest it wouldn’t have been far off how I would have been on the old fizzy stuff, normal and well. Although I probably would not have looked my usual glam self in this seasons finest, I don’t think a fluffy robe would have cut the mustard as a guest outfit, but oh well.

They got married on floor two in the chapel, balloons, buffet and cake galore came through the corridors. How romantic, what a whirl wind, I love a good love story. I see Dave most days, he is looking very well considering the circumstances.  I especially like to peer into his room when I do my daily ward walk for exercise and see them both together, so committed to each other, that’s true love. amazing. sod you failed livers. She is currently living in army accommodation down the road.

Whether it be heart, lung, liver or kidneys its real. They do go. How would you feel if it was you or someone you were close to? I know we can’t control donation, whether someone dies of heart failure or brain failure to rescue a healthy organ but have you opted in to donate?  I’ve had chance to think about it, admittedly have I done anything? no, didn’t or haven’t even thought about it, like most, life has always been too busy to question. Wrapped up in the here and now with your own problems. I can’t think of any reason why I wouldn’t, your gone, your life has passed so why hold on to the precious tools you have that give chance of life? Surely that’s one of the best things you can do for any human being and any family.

I was surprised to hear that currently in Wales I think you have to opt out of organ donation, what a great idea, here in the UK it still stands that you have to opt in. Globally not sure. There’s a guy in the ward opposite that had a liver transplant four years ago, he had half of the liver organ and a two-year old had the other bit to save her life. What a story, he was called up on the list on 16th December and his life was back on the 28th of that month. He was a very lucky one indeed. Medically, I cannot actually believe us humans  can do this type of  stuff ? just amazing.

I woke up this morning and felt compelled to write about this topic, even if it makes one person think about organ donation its worth it. I’m surrounded by real troopers here who are true long stay victims. I feel awful actually, especially when you think of my NHS food blog, they are subjected to it for weeks. Too sick to go for a walk in the fresh air or even down to the shop.  My baby crohns problems feel so insignificant at times that it’s really food for thought, I get that it is all contextual, everyone has their own problems, but I don’t know its really touched me that as humans we can always do more for others if we get over what we are actually doing.

These are the people who are keeping me sane by coming into my room and having  chat and a giggle about how we all hate that we can’t make ourselves a cup of tea because we are not allowed to touch the hot water, at 30 years old !  I should be keeping them sane, do more for them, my ward friends, in it together, I get to walk out the door at some point with baby  and live my fortunate life. They might not. Moving thought.

I’m off to review wedding snaps this afternoon, I’ll try get some snaps of Dave and upload !

 

Organ donation, would you think about it?

https://www.organdonation.nhs.uk/

http://www.nhs.uk/Conditions/Organ-donation/Pages/Introduction.aspx

 

 

 

 

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About crohnsmamashttps://crohnsmamascouk.wordpress.comMom blogger with Crohns Disease, the more active the crohns the more active the blog ! :)

3 thoughts on “Organs in need.

  1. It’s sadly the same with bone marrow donation even though it doesn’t require death ! You can give the gift of life to someone with a small sacrifice !
    Yet the donor registry for this is never publicised or talked about !
    Over 60% of the donors used in the uk come from Germany where it’s common place to donate !
    We live in a world where people don’t think outside themselves , it would be amazing if people could simply give a little of themselves in so many ways to make a huge difference to another human being in need !

    Sending huge love to you and bump xxxx

    Liked by 1 person

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