Would you believe it

[Bs1524]

We had put our house up for sale prior to husband being diagnosed and someone who saw it before lockdown has offered the asking price. However husband doesn’t feel he is up to looking at properties let alone actually moving. I get it but If he is put on the list etc we could be here for some time. I was hoping we could have moved before then.

He said moving is way down on his list as he feels he is in a life or death situation but I have been wanting to move for years this house he bought when he was with his first wife and there is a long history of upset with his daughter the last one which tipped him over the edge back into drinking etc which led us to where we are today.

Sorry for the moan just needed to get it off my chest, thanks x

[Dusty1710]

I was in the same position 6 months ago, actually found somewhere and had a buyer but husband was so ill in the end we had to call it off and looking back was the right thing to do as my husband was eventually put on the transplant list ( didn’t think it was ever going to happen with the COVID 19 situation) but it did and 2 weeks after he was on the list we had the call we had been waiting for and thank god we did as he was so poorly in the end. He is now home and we are 4 weeks post transplant and feel like I’ve been in another world with it all happening so quick but he still has a long way to go and emotionally it also has been so hard. So now we are going to wait to see how recovery goes before we go ahead and move ( we too also want a fresh start with bad memories in the house) . My advice would be to wait as you just don’t know how quick things can happen and by your post I see your husband is quite poorly. Best of luck xx

[Bs1524 in reply to Dusty1710]

Thanks he is up and down but I guess if the consultant has referred him for assessment that means the outlook isn’t great. My worry is we stay in this limbo world I know I sound petty but this last year has been so horrible that moving was the one normal thing I had to hold on to, fooling myself really.

[Laura009 in reply to Bs1524]

I agree too Pam. You are in a stressful enough situation already with hubby being so poorly, a transplant on the horizon then a slow recovery. Plus going through this pandemic with the anxiety it has brought to many. To throw a house move, which brings its own trials and tribulations, into the mix would be mental suicide for you both. Up to you at the end of the day of course but l wouldn't have even considered putting it on the market during this topsy turvy year.

Laura x

[Bs1524 in reply to Laura009]

Hi Laura,

When we put it up for sale there wasn’t a pandemic and we were in blissful ignorance of his condition. To be honest I worry that his daughter will turn up and cause more trouble. I think I have been fooling myself about how easy it would be to move

[Laura009 in reply to Bs1524]

If she does she can't go in your house ... social distancing still applies. If she comes within 2 metres of either of you causing a disturbance call the police.

I'm sure you have nothing to worry about there though. Just relax as much as possible and take 1 day at a time and deal with what each day brings. Don't tie yourself up in knots worrying about what may happen in the future you will make yourself very unwell and unable to deal with the here and now.

Look after yourselves xx

[Dizzie14 in reply to Bs1524]

Hi your story could be me. We wanted to move last year but my hubbies health deteriorated and I couldn’t cope with the stress of viewings. I am still hopeful of moving away but would like him to be there but doubt he will make it.

[Robbie21]

I completely agree with Dusty. We had sold our house and were self building a new house when my husband became ill. Things where changing so fast. We stopped the build and moved in with family. It was the right decision, as my husband's illness and transplant became all consuming. Lots of ups and down, but at last we are getting there. It is 6 months post transplant and if the builders were available we would be starting again. It put things in perspective and we will have our new start at some point. So for now the build remains locked up.

Priorities change. Good luck for the future.

[Bs1524 in reply to Robbie21]

I know you are right I just need to get over my disappointment my thinking was if we could move before hand and get settled we would be nearer shops and public transport and closer to my son for help although he has just said did I want to go and look at the outside of a property I like but we turned down the offer on our house so I can’t see the point. There is no family apart from my youngest son that can help me. I was hoping that if I had a shop I could pop to it would make life easier. Although nothing this year has been easy.

What if he ends up waiting years we are not getting any younger I retire in 18 months.

[Robbie21 in reply to Bs1524]

I can only speak from our experience.

From referral to acceptance was a couple of months, then 5 days on the list. Things were changing so fast, completely unpredictable.

Things got so bad I struggled to continue working. I couldn't imagine the stress of a move at that point.

I suppose you have to weigh up all considerations. We are lucky that we had good access to lots of shops and to our parent hospital. Support is essential.

We were very fortunate as we had camped out with family we had a nice place to recover. Everyone's situation is different.

Maybe it might be worth asking your husband's liver consultants advise as they know all your husband's risk factors, so may be able to advise what sort of approx time frame your husband might face on the list.

It might help you make your mind up.

[Laura009 in reply to Robbie21]

Hi Robbie. Unfortunatly asking how long how they are likely to be on the list is like asking how long is a piece of string. Some are on it for days others months even years. It's not a matter of how far down the list you are either. Its dependant on which liver becomes available and matching it to the recipient. Would be much more reassuring if it was just knowing which position you are on the list. Sadly it isn't.

Laura x

[Bs1524 in reply to Laura009]

Selfishly that is my concern if he is on it years it means staying here for years. I know I sound me me me but Imhave worked for over a year and a half with only time off to take him to medical appointments, it was a bright spot on the horizon for me.

[Laura009 in reply to Robbie21]

PS ... you were very fortunate .... 5 days 👍

[TT-2018 in reply to Robbie21]

I was a priority listing and due to the donor shortage with type B blood, I waited for 19 months for a match. It is the nature of transplant and not only does the blood group need to match but the donor organ needs to fit.

The unknown is a very difficult situation to deal with and not being able to know what the future holds.

[Bs1524 in reply to TT-2018]

That’s why I hoped we could move before things got worse. I just have to deal with my disappointment

[Laura009 in reply to Bs1524]

Think how much more disappointing and chaotic things would be if you were to get the call for the transplant on the day you were due to move... what would you do? Cancel the move or the transplant? Is it really worth throwing another massive hurdle into the mix ?

[Bs1524 in reply to Laura009]

I know I am feeling a bit resentful all the years drinking if we went out in the morning I knew we would have to be in a pub or home by lunchtime so he could drink. Then the few years when he stopped and led a normal life then the phone call from his daughter all the upset the drinking again then his diagnosis and our life turning on its head. I know we can’t move just it was something for me.

[Robbie21 in reply to TT-2018]

You are so right, as we know the wait is dependant on so many factors.

My husband was just "fortunate" to have a high MELD score, average body size and was blood group O and his clinical condition was desperate. If he hadn't been transplanted at that point he'd have died. Thankfully all the stars lined up that night.

I suggested that BS1524 spoke to her husband's transplant consultant as they knew the full details of her husbands clinical condition and could maybe advise accordingly. If they couldn't advise they would be no worse off.

I personally wouldn't put myself through that stress of a move. But each to their own and information is power.

It must have been a frustating wait for you TT2018, the down side of being blood group B. Hopefully you have made a good recovery.

How much easier would life be if we had a crystal ball. 😃

[Hidden]

I know when ill moving would be hell, as my wife would have has to do it alone

The only consolation, my journey included selling my treasured car because I was in to much pain (Not the same I know) as it turned out a month before my transplant.

I felt so much better after the transplant, I was still in hospital and had got my get up and go back and bought another one from my hospital bed.

So once he is better things can get sorted much easier.

Life has a way of turning up good things when you are ready

David

[Bs1524 in reply to Hidden]

Hi David

I now you are right but I do everything alone anyway even holidays all he had to do was turn up usually drunk and I would pray he didn’t kick off on the plane (he hates flying but loves holidays). We were going to have the removal company pack for us. With Covid 19 I figured we wouldn’t stand much chance of selling then we get an offer and for a little while I believed we could do it.

Sorry if I am sounding petulant I don’t mean to but I think everything that has happened is catching up with me. I saw moving as a way of being near to my son and his help, having some amenities handy to make things easier for me and to get away from bad memories and the chance his daughter fronting up on the door.

Everything that everyone has said is correct and for his sake I will put it on the back burner.

I just need to pick my lip up off the floor and go and retrieve my dummy.

Thanks x

[Hidden in reply to Bs1524]

Hmm

If you say so, there is also a point you look at what's best for your future

It easy for me to say

David

[Bs1524 in reply to Hidden]

David I think what you said about things having a way of working out is correct. I don’t want to force anything I was and am disappointed but I have learnt to let things unfold. I was fooling myself how easy it would be because I so wanted to move. I will get over it and move on x

[Hidden in reply to Bs1524]

That's Good then

Thinking of you

David

[Soreknees2016]

We have a saying in Scotland that ‘what’s for you won’t go by you’ and there have certainly been a few times in my life where not being able to go down a certain path turned out to be a blessing in disguise. Perhaps this is ‘fate’ telling you that, however hard it is, now is not the right time to move, and that things have a way of working themselves out for the best if you can just hold on. Wishing all the best for good outcomes.

[Bs1524]

That’s kind of how I am feeling now actually here’s hoping it works out in the end

[Dizzie14]

Hi I sympathise it is the same story as me. Take care.