So I have been speaking to my Tx coordinator and when she thinks I might be transplanted or if I cam moving up this elusive list....and I've had a response which yesterday see me go into full on melt down mode....
She has informed me that because of the complications surrounding my Liver Disease I could be waiting longer than the average waiting time of 12 - 24 months. I felt like it was a right kick in the teeth, like I was almost told to go to the back of the queue and start again! Silly I know and this isn't what she was saying at all, she was just saying they need to be really selective about what they give me. But it didn't make me feel great.
So whilst at work a spread sheet I had been working on for the past 18 months had disappeared from my system...gone....I was broken. IT man to the rescue and document back on my system....
To say I had a crap morning, full of tears is an understatement. I've had time to sit and think about things and know that I'd taken what I'd read as potentially 2-3 year waiting and this isn't the case...well I hope not.
So if you having a bad day, just stop, have a cry, chat to someone, have a cuppa and start again! Like my mum said to me, we all need to let things go at times, we can't be strong and capable all the time, sometimes we just need to stop, have a few moments and start again!
I hope you all have lovely plans for the weekend. Chelle xx
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Hi chelle , im sorry you have had a bad time hun ..i get them quite a lot at present due to frustration of waiting on bloody lists for differnt tests and home assesments. I have not had a bath/ shower in 3 weeks now 😐. All due to probs with my hip . I try my best to cope on my own but its such a daily struggle. I would not worry too much hun about tx list.. your time will come .You are a lovely young lady and i know all will ve be fine in the end .glad YOU sorted out the computer. Thank you for sharing and giving positive impact 😊x
I dont really want to give you any false hopes here, but, I too was told that I could only accept a very good liver. However, I got a transplant 6 weeks after being listed. So, whilst the likelihood is your co-ordinator's estimate is in the right ball park, there is always a chance of something coming up sooner.
I appreciate your case is likely to be much much different to mine. I had a hell of a lot of other things going in my favour, good blood type etc etc etc. I do though hope that your wait isn't as long as the forecast. Lets hope they're as good at forecasting as a long range weatherman :-).
Kristian, thank you I've been waiting 12 months already, it just felt like we were getting somewhere and then it all just felt like 'start again' I similar to you have a lot going on....lots of blood clots, lesions on my liver, blood cancer and PVT....I know it'll happen when it happens. I was in a mess yesterday, for no reason really.
Sorry you had such a sh*t day. We all have them to varying degrees. Am sure you’re made of stronger stuff and along with a good cry and hug you’ll come through this.
Please try not to get to down, nothing wrong with having a cry we all do. You sound extremely strong and possitive and it will happen for you I have been on THE LIST for 11 months and was told that they are waiting for the right one and it could be today or 6-12 or more months but I have complete trust in what they say.
I am in exactly the same situation.Due to surgery ect on my last transplant they have to be extra selective about what they give me this time.
I knew I was on borrowed time no matter what and the complications will be massive (2 teams of everybody plus a blood bypass away from the old liver) but we have to stay as strong as possible.I'm just praying for the day I can see my feet again and also breathe properly.I am getting worse so it's me fighting my body and seeing who wins. Body 1 Me 0 so far
You cry as much as you like,if now isn't the time to have a bitch & a moan when will there be?
If been following your journey. I hope they manage to get you into a comfortable place soon. There nothing worse than feeling poorly and being uncomfortable.
Take each day as it comes I keep getting told. Good luck to you.....and thank you xx
Oh Chelle I feel for you. The whole process is like riding an emotional roller coaster. It's ups and downs are draining. Hold on tight! Your advice is spot on, please remember to use it to look after yourself. Big. Hug from me. The call willcome. It's just a matter of when. Wendy X
I know Wendy thank you. My family are a godsend. Keeping me grounded but no one knows what it’s like willing your phone to ring....wanting it all to be over but I suppose that’s the start of the next journey! Good luck xx
I'm sorry you're going through all this but I am glad you let it all out. Being strong isn't just about smiling. Being strong is when we can let out our emotions without fear. Crying I feel makes us strong. It let's out all the negative feelings and suddenly you feel lighter and positive
I have been dealing with chronic pain for over a year now. For over a year my life has stopped and I have two young children one of which is disabled. Over the summer I felt like I was going to take incorrect measures to stop the pain and I was in a dark place. I was really scared! I'm dealing with it now and there are days I feel so helpless and like I'll never be better and it makes me wonder why I had this transplant. But then I just cry and let it out and carry on!
I said this to my mum yesterday. I feel better like I can battle the world again once I’ve had a cry so maybe it’s something I don’t do often enough.
Pretty crap at talking about how I feel too.
I hope your coming out of your dark place. Kids need there parents no matter how well or poorly they are. There’s nothing worse than being a kid wishing you could tell your mum or dad things on a daily basis and them not be there. Try and stay focused on the good and you can always message me if you get a little wobbly.
Where do you live? Never know we might be neighbours....lil
Perhaps we should meet up. Pre and post transplant people are intrinsically linked in a way that no one else can understand. A hidden bond. Just keep talking and sharing on here. There is ALWAYS someone listening. Hugs to all. Wendy.
Where do you live Wendy? Your right, I have a friend on here that I lean on quite a lot, I feel like we have shared a special journey, he's had his tx now....and doing incredibly well.....It is a very different relationship that we all have.....xx
Your mum must be an owl, either that or she's a very wise bird. These are very hard times for a lot of people who are waiting for a transplant. You do certainly need to get that stress out of your system otherwise it may fester and overwhelm you. Crying is a good release, being a guy, we tend to allow these tensions to build up and keep them bottled up. But this then makes us irritable and hard to live with. All men should have a cry, and not feel weak or ashamed. After all it's the bodies way of releasing the stress. (Besides, I have shares in Kimberly-Clark, the makers of Kleenex).
Try to remain positive and keep on looking to the future, A new year and hopefully a new beginning for you hun. xx
Take care and enjoy your tea and cake. They have got me through a lot of rubbish. My hubby calls me a tea urn (cup or pot being far too small for how much I love tea). I like decaffeinated best as it is reduced caffeine. Full fat would have me buzzing. Peppermint is nice but only when it is weak. I love strawberry and raspberry or blackcurrant flavours but obviously they are not real tea. Those sort have to be really strong or the bags leave a taste like used paper that is soaked in something nasty. Roobos is weird I can drink it but I'm not keen on the flavour. I smelt lapsong sushong it is spelt something like that and I can't for the life of me understand why it is drank by anyone. An acquired taste....I'd rather not.
Of course I like a lot of different cakes, but not keen on chocolate, unless it is a black forest gateaux. I am having to cut cake and naughty puddings out most of the time, but a girl can dream. A rich tea biscuit just doesn't get the taste buds going in the same way a custard slice does. Although as I'm a drinker of biscuits a rich tea is brilliant for dunking.
Take care and let the emotions out and the sunshine in to help you over this difficult time.
Please let it all out. I did just that on Thursday, had a rubbish day but then in walked my son with a vanilla slice!! Yum yum!! Don't have them often so really enjoyed it!! Please take care. Lots if love Lynne xxxx
I hope you are feeling a bit better. How are things at present? Glad the vanilla slice hit the spot. I am having a rare treat of a custard slice today.
Not very good but thank you for asking. I was sent home from work in Thursday, pain and exhaustion, going back in tomorrow. How are you feeling at the moment? Please take care. Lots if love Lynne xxxx
O.k.. tired easily, and had some dodgy blood readings, but increased my tea and mint tea intake and it helped. Also reduced some of the itching. Probably find I've messed up somewhere else but that is me. I'm supposed to be on leave next week but I have some urgent work to get done. Tiredness delayed it getting done earlier. Still worth doing it now as we are off to Devon for 5 nights in a couple of weeks.
Don't say rude words I still haven't written my cards or decided what to buy everyone. After that I have to get tidy. That may sound easy but housework is really hard now. I also live with two men who unless it directly affects their own needs can ignore it.
Will no doubt chat before Devon. Keep us posted on how you are.
sorry hunny. I still have meltdown days. It just happens like grief. Taps me on the shoulder and I'm a mess. I end up having a pity party with my pillow until I'm able to try and start again. Wishing you luck.. Sending you love xx
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Jx
Ascetic drain finally
Up Date on husband.
help with foods please
W - K Syndrome. What To Expect?
