Hey!
Did those of you that were recently transplanted receive a “care plan” on discharge? Thanks, Leigh.
Care plan?: Hey! Did those of you that... - British Liver Trust
Care plan?
Written by
Poobear69
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47 Replies
•
Good luck with that one.
You'd think it would be something they'd do though. Even tattoo artists give care plan pamphlets after the jobs done lol
Hi there. I was given phone numbers to ring if I had any questions or problems and given my first clinic date. Transplant hospital got in touch with my GP to arrange for district nurse to call 3 times a week to change my dressings and drains. It actually happened only twice a week. I had a huge haemotoma after transplant and they had to take a few staples out before I was discharged and so I came home with 2 drains in. District nurse had to come for 13 weeks until I healed (guess it took so long because I had been weak and ill for so many years) That's the sum total of it. Oh, and hospital phoned me 2 days after discharge to see if all was well. Alf
You obviously were very poorly Alf and quite right that those arrangements were made for you. I find it strange that in tbe Friday I had a few weeks to live and 10 days later I was back home? It almost felt like leaving the proverbial lamb to slaughter? Hope your well.
Yes it's surreal isn't it. Even more so after I had been considered terminal for 4 years. Still have to pinch myself to see if it's true and I'm still here! Yes, I'm really well and raring to go after I get this brace off (2 weeks, fingers crossed!). Going to get my muscles built back up and relieve my wife of some of the jobs she's had to toil through for the last 5 years. Be great to feel useful again!! How are you doing after your A&E trip? Good I hope!! Alf
Did you struggle back home after transplant? I know that if I'd have been living alone that I definitely would have struggled. Just remembering my tablets would have been difficult for me and getting to the bathroom on my own would have been a non starter, but I was seriously muscle wasted so others have probably found it a lot easier. Alf
• in reply toalfredthegreat
It was all a major struggle, the hardest part was trying to get a care package. Gave up on that one but that was pre-transplant. I had the in vogue back brace.
alfredthegreat• in reply to
I commiserate on the brace! it is a bit unnerving after all that happens in hospital and bump! that's it! you're on your own. There is a huge shortage of district nurses. I was lucky to get that help because the hospital were thinking of training my wife to see to the drains and changing the dressings but then they changed their minds. My wife was glad about that because she said that if there was anything going wrong then she was not experienced enough to realise it. The district nurse told me that there used to be seven of them covering my area and now there are only two district nurses covering the same amount of work. It's a similar story about care workers.
It’s all to do with central government cutting council subsidies. We seem to have no street lights after midnight? I wonder how much that costs A&E?
What’s a care package? Not me as you can guess!
I would have just appreciated a little booklet of Do’s and Don’t’s post TP, like the one I got pre TP! That would have stopped me having to cancel my fully paid up overseas holiday because of not being able to holiday abroad until 6 months post TP. I was 4 months. Noone had told us that “rule”. 😢
Miles
Poobear69• in reply to
That’s one thing I did know, about travelling? We were due to vacation in NZ this year bit I ve been told by O’Grady that I can’t travel that many hours? So Greece it is! Not that I’m complying as I would be happy to spend this new and amazing life just in the UK.
• in reply toPoobear69
How long since your TP poo? I probably seen before, but with my memory ☹️.....
• in reply to
You made me laugh when I first read this Pilo. 🙂 As we call toilet paper TP. That with the poo. Lol was just to perfect.
• in reply to
Haha so a transplant is like toilet paper hmmm I got that wrong then! Oh and good evening 😁
Poobear69• in reply to
Almost 7 months!
• in reply toPoobear69
Greece? That sounds awful! 🙄 oh I'd die to go there! Have fun my friend!
• in reply to
Wel I expect most of us would die (not literaaly of course 😁) to see where you are Phoenix. I mean Arizona - Wow!
• in reply to
Lol Arizona would be nice right now. I'm freezing here in Toronto!
• in reply to
It was a joke Phoenix. Had this little tete a tete with you months ago 😁😁😁
• in reply to
Oh yes ! Geez maybe I need sleep 🙃
Speaking of which my friend it's got to be 4 am there ! Your like a vampire Miles!
• in reply to
Well yes it’s 0400. Stomach pains still waking me up even after 60mg codeine. Whoops we’re not supposed to put values on here. Don’t report me will you 😁
• in reply to
No good. Stomach pains are the worst. That and nausea. Id rather have a few toes chopped off than stomach pain.
Poobear69• in reply to
Many s long weekend in the late 70’s and early 80’s in Toronto 👌🏼
AmericanDemocrat• in reply to
That’s terrible, Miles, that you weren’t informed about travel restrictions. Major blunder on their part, costing you a major bundle! Also, thank you for the TP + poo combo. It made me laugh as well! 😂
• in reply toAmericanDemocrat
Hehe AD it was unintenional I can assure you. But as long as it made you laught then that’s 👍😁
Miles
AmericanDemocrat• in reply to
Um, your comments always make everyone laugh, I think!!! Good medicine. 😉
• in reply toAmericanDemocrat
Oh my! Good job they’ve not met the real me 😁.
Daughter used to call me a boring old f*rt - but then that was before my TP 😁😁 hehe
Miled
We got a little pamphlet when my son
Was discharged with emergency numbers and a few bits of info like what to do if he was sick after taking his tac or got a high temperature but I think there could have been more to it. I felt very scared and out of my depth when he was discharged, I was taking his temperature every day and was a bit paranoid and I think maybe more information and support would have helped with that.
How old is your son?
He was 16 when he had his transplant and 17 now x
• in reply toDanisleigh
Wow that is a heavy weight for a parent to hold. It really chokes me up to hear about young people having to face such intense issues like this. Just breaks my heart. Only 16?! The poor young man! Do you mind if I ask what was the cause behind the liver disease? My little girl is only 8 and I couldnt imagine having to watch her go through something like that. 😣 ....I'm glad to hear he was successfully transplanted and I hope he is on the mend good and strong. All the best to you and your son Danisleigh!
Danisleigh• in reply to
He was born with Alagille syndrome and basically had too few bile ducts in the liver. He managed fine for 16 years apart from pruritis but then he developed a HCC. It was hard I am not going to lie but it all happened so quickly, we were told on 10th January, listed on the 19th and transplanted 7th Feb so we didn’t really have lots of time to worry beforehand which is good.
• in reply toDanisleigh
Thank goodness it was fast. But wow what a stressfull time for you ☹️☹️.
Which hospital gave the pamphlet? Not QEHB I presume?
Miles
Danisleigh• in reply to
He had his transplant at The QE but only as the children’s hospital can only do on transplant and they operated on the baby who my son shared the liver with. Once he left Intensive care they transferred him back to the children’s hospital for recovery and they gave us the pamphlet.
Also I had the flu really bad after my sons transplant and couldn’t visit him after the first few days so I don’t think that helped as maybe I missed information given by the nurses which my husband probably didn’t take in!
• in reply toDanisleigh
All sounds horribly traumatic- yoiks!
My transplant was at QEHB. We were given lots of single sheets - a bit of a mess really! And noone told us about no abroad trips until 6 months after TP. There were 3 of us there for the discharge 😐 so pretty sure about that. Subsequently I suggested to one of the coordinators that they should produce a little booklet of do and donts post TP. She said it was a good idea but hmmm... I’m not holding my breath.
So glad that all seems to be OK for you now though?
Miles
Danisleigh• in reply to
We knew about the no travel abroad mainly as we should have been going on a dream holiday for my 40th in the March and we had to cancel as the consultant said either he would be waiting on the list or recovering and that he should go for 6 months afterwards. I think it may have been in the pamphlet too?
He is doing well thanks, we couldn’t believe how quickly he recovered, back in his part time job 7 weeks post transplant! That’s the benefit to his young age I guess along with the fact he was actually well in himself pre transplant apart from the HCC.
• in reply toDanisleigh
Brilliant!👍👍👍
Hi, Danisleigh - if I am prying too much, just ignore this question. I am just trying to learn as much as I can. From your comment, it sounds like an adult liver can be shared between two children? You’ve been through a rough time, sending you all good wishes.
Yes that’s correct, my son received a split liver as he needed either a right lobe from an average size adult or a full liver from a teenager or very small adult. A lot of babies have left lobes transplanted like the baby who my son shared with.
So helpful and interesting to know… Thanks for taking the time to explain. All the best.
The hospital should have sent it to your gp
You can phone the coordinators if you have any questions or worries and should have been given their number?
No because hubby's first clinic check up was too days later, told to come back in to a&e & ring the transplant team of there were issues, given guidance on not what to do during the first 6 months
Did you not get a transplant book? I received one but I have hardly read it and I think some people it would make more paranoid... I know someone who lived her life by it and she was in A&E every bloody week just wasting hospital time I can't cope with people like that lol
Are you concerned about anything in particular?
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