Husband having a meltdown

[Bs1524]

Hi everyone,

My husband has told me he is frightened he believes that even if he makes the list (the consultant was quite sure he would, but...) we live too far away so he won’t be considered. I told him it doesn’t work like that but he doesn’t believe me. Am I wrong?

[h0b0]

I think you're right. Don't believe the list has anything to do with Geography.

[Bs1524 in reply to h0b0]

Thanks it just seems so illogical to me to refer someone knowing they wouldn’t be considered because of distance from the hospital. He says they have to keep the donated liver in optimum condition so they will want someone who lives closer. I am sure that is not how it works but he won’t listen.

[Kristian]

Distance is not an issue. I was listed in Birmingham and I live just north of Manchester. I know there are others being seen in Birmingham from North Wales and the Isle of Man as well various locations in the far south west.

[Bs1524 in reply to Kristian]

Thanks Kristian,

I will tell him not everyone can live near the relevant hospital can they?

[Kristian in reply to Bs1524]

Absolutely, there is only 7 centres that do liver transplants in the uk. Its therefore inevitable that a large proportion of patients will live some distance way. They just need to know roughly how long it would take you to get to the hospital from where you live. They'll always be more than enough time to get you there.

[AyrshireK]

Distance is no object - we had a member on here from Shetland at one time who was listed and transplanted - obviously the Scottish transplant centre is Edinburgh.

We ourselves are 100 miles from T/P unit too being on west coast of Scotland with no good roads from our area. Whilst waiting we were told we couldn't ever be more than an hour away from home so we could get back if the call came.

They either blue light ambulance you to the transplant hospital when the call comes or even air ambulance. I told them there was no way I could drive it whilst panicking about what was to come.

When the call comes there is still lots of time as the donor is generally not yet deceased (unless it is a cardiac deceased donor but they will be arranging all that their end because time is off the essence for those organs), they just know that the discussion has been had with donor family and at a certain point the machines keeping them alive will be switched off. They also have to get the donation team surgeons to the donating hospital which can now be anywhere in the UK and the organ too may travel from anywhere in the UK so distance really isn't an issue.

You'll get there.

All the best, Katie

[h0b0 in reply to AyrshireK]

Wise words as per normal.xx

[davianne]

Hi, I'm glad the posts of assurance have given you comfort, now you must convince Hubby that geographical position doesn't matter at all.

David

[Hidden]

Hello,

All the comments you have received are correct, distance does not come into it. I used to be a liver transplant coordinator so I absolutely know this to be true !

regards

[Bs1524]

Thanks everyone I have told him what you have said. He thanks you too by the way. I really believe the reality of his situation is hitting home.

We had the occupational therapist round and she bought with her a walking frame this was because he was falling and had body tremors he had real trouble with the stairs of course when she came he was feeling better but the sight of the frame shocked him.

I guess I am telling you all something you know already. I must say the OT has been brilliant checking up on us more so then the GP. All we have do now is wait for the appointment for assessment to come through.

Thanks everyone xxx

[ThreeSmiles in reply to Bs1524]

Thank goodness it’s starting to sink in at last...I bet the sight of that walking frame really did scare him...Did she say he should sleep downstairs? That is of course if you have some form of bed downstairs....

Hope he continues to listen to you now 🤞

Miles

[Bs1524 in reply to ThreeSmiles]

Hiya,

Yes she did suggest that you should have seen his face. His sleep pattern is all over the place he sleep on and off all day yesterday then couldn’t sleep in the night. So his thought are whirling around. I am trying to be positive but that annoys him, he says, “You want to be where I am”. which I get but what else can I do?

[AyrshireK in reply to Bs1524]

Don't let that side of him grind you down, you need to stay positive because the journey is going to be somewhat more difficult for you as his loved one. In some ways the poorly person has it easy as their every need will be looked after. A caring loved one goes through hell too, an emotional & exhausting roller coaster.

He'll never see it BUT would he want to be where you are?

Watching a loved one suffer, not knowing if we are doing or saying the right thing, dreading any worsening in his condition etc. Us 'caring loved ones' go through hell too, the helpless feelings, the trying to do our best, the picking up the pieces, the dread of watching a loved one poorly but the wait seeming forever. We are the one who will sit at home or at the hospital for the 10-12 or however many hours surgery takes all the while not knowing if our loved one will come out the other side. You'll be the one lifting, carrying, driving and caring for the recovery period too. This is a tough journey for you both! (and you are/have to be a team to get through this, the support issue comes up in the transplant assessment).

We as carers and loved ones do have to stay positive or we'd go nuts ourselves, I know in this time with the lockdown and everything it is hard but you need to take care of yourself too, a break or a bit of time to yourself is essential or you'll go bonkers.

Take care.

Katie x

[Bs1524 in reply to AyrshireK]

Thanks Katie

I will be honest since the lockdown well before it started actually I have been working from home and it has been driving me crazy not getting any relief from how it is at home. At least before I could visit my son, go shopping etc now apart from a quick dash to the next village’s shop we are locked up together and it is hard.

I done think as you say any conception of how hard it is but if I do mention it I sound self pitying compared to how poorly he is.

You can’t win can you?

[Huggy7614 in reply to Bs1524]

I absolutely agree with Katie.....and I was the recipient. I can now realise what a pain in the arse I must have been when I was poorly, and how much my partner had to put up with......

How about Friday nights 8pm for the partners!!! 😝😝😝

I do wish you both well.

[Bs1524 in reply to Huggy7614]

Thanks Huggy it helps so much reading all your replies it makes me feel not so alone with this.

[Laura009]

Hi Pam haven't you heard about these volunteer motorcyclists who take blood and organs to hospitals all over the country wherever they are needed at break neck speed? And isn't it Wass / Elisia who travelled 4 hours to the hospital for her transplant?

[Bs1524]

Hi Laura

Thanks for the reminder I had forgotten that I think he had been thinking he wouldn’t be able to get there in time. I do wonder what thoughts have been whirling around in his head he hasn’t discussed the situation at all.

[Laura009 in reply to Bs1524]

Just stay calm. Everything will happen when the time is right. Yes he may get a call, get to the hospital only to find the liver is not suitable, you will have read the stories on here. Just don't over think things or get into a row with hubby over any of it. Just remember that the way he is thinking and talking is down to his illness and will try to convince you black is white. Go along with it rather than arguing with him you will tie yourself in knots and for what? Everything will click into place and you will be told where you need to be and when rather than hubby guessing whats going to happen.

Take care

Laura x

[Bs1524 in reply to Laura009]

Thanks Laura, you are so right and I will do my best to hold on to them.

[Newcastle1]

Too far away?? Where do you live?? I had my transplant in Kings, London and I live in Plymouth. People who live abroad have had transplants in the UK

[Bs1524 in reply to Newcastle1]

Hi Newcastle I have been trying to unravel his thinking on this I believe he was thinking that transplant patients would have a finite period of time to get to the hospital. I have been reading all the replies out to him and I think,the penny is dropping now. x

[AyrshireK in reply to Bs1524]

All these anxieties and all your queries will be discussed and ironed out as part of the assessment and listing process - there are lots of bits of the assessment which are just 'chatting' with coordinators, doctors, surgeon, anaesthetist, psychologist, social worker etc. They will discuss 'life on the list', timings for getting to the centre if the call comes, appropriate transport (we were told hubby would be blue lighted or even air ambulanced if need be and we met others who had indeed been blue lighted for t/p), your grab bag needs, post transplant support etc. etc. etc. All part of the assessment.

All the best, Katie x

[Bs1524 in reply to AyrshireK]

As ever Katie wonderful informative advice thank you x

[Lunartic]

I live right on the south coast and my hospital is the Royal Free north London. Been called 3 times now and they send a taxi - time used to be optimum but with this new machine they hook the livers up to, to test them to make sure working ok, they can keep the liver alive. Last time we were there late evening and they said they wouldn’t do the transplant until the morning. Unfortunately the donor liver was no good that time.

[Bs1524 in reply to Lunartic]

Thank you so much for explaining your experience I must admit I thought I may be called on to do a mad drive in the middle of the night.

[Yellowsydney]

I had my transplant at Addenbrookes Cambridge, I live 11/2 hour away but there was also a lady from Southampton about 6 hours away, Addenbrookes also covers the channel islands. There was one lady having a multi organ transplant from Glasgow she had been brought by ambulance all the way as they couldn't get her on a flight.

I was terrified when they said I needed a transplant so can understand he is anxiety.

Hilary

[Bs1524 in reply to Yellowsydney]

Aw thanks Hilary we are about the same distance away as you x

[Julie8]

No I was told they would blue light you in if need be

[Bs1524 in reply to Julie8]

Thanks Julie for the heads up it is just the two of in this my poor FIL is 86 and caring for his partner with dementia so ai don’t like to trouble him with these worries so it tends to fall to me to do everything. It is fantastic that everyone here is so patient and free with help, understanding and advice. I can honestly say I have no idea how I would have coped this past year without all of you. Thanks x

[GrannyDoll61]

We got the phonecall at 4pm to say we have a liver. We were asked to be at the hospital for 22.30 as the liver was not in the local area. My hubby had his transplant at 1.30am.I have read that they usually harvest the liver at night when all the routine ops are finished?Hang on in there.I know it's a rollercoaster but I can tell you 2 years after the transplant it was all worth it xxxx

[Bs1524 in reply to GrannyDoll61]

Thank you for sharing with me and I am so happy for you what a wonderful outcome x

[buckldgl]

The guy in the bed next to me at King's Hospital London had come from Plymouth

[Bs1524]

Thanks for responding. My husband has told me he is frightened and I believe this was him looking on the dark side finding reasons why he wouldn’t make the list.x