Facing some tough times…

[Covid2020]

Dear All,

I have seen so many of us on here sharing our stories of seeing our loved one in so much turmoil… I would like to join you tonight.

Many years ago, it was here, where I got support while my husband went through transplants and surgeries following it… I was on here as Pear Shaped then.

We were told 2 years ago his artery was blocking, following unsuccessful stent, was then a told it looked ok and nothing to worry about.

4 months ago he was rushed into hospital with sepsis… followed by more sepsis infections. The artery had blocked and the low blood flow is making the bile create abscesses which are causing sepsis.

There is a strong anti transplant 3 feeling amongst the team, so we are now planning end of life care.

Just wanted to ask if anyone else has experienced this? Just feel so helpless…

Thank you

[AyrshireK]

Hello my friend (yep I am still here).

Sorry to hear that things have taken a downward turn after all these years. I remember back when he had t/p 1 and 2 and 3 looked a possibility way back then. So sad that he's had all these complications and you are now having to plan for 'end of life' scenario. I haven't had similar experience but you may find useful information in the BLT publication on Planning for the future :- britishlivertrust.org.uk/in...

Thoughts with you and the family, bless you all.

Katie xx

[Covid2020 in reply to AyrshireK]

Thank you Katie

Just feel they could have done transplant 3 but we have had a group of docs who have been anti any surgery or op since the artery issue had come to surface

[AyrshireK in reply to Covid2020]

I am surmising that the issue with the artery would very much complicate the 'plumbing in' process for a third transplant. How does hubby feel about the whole thing? Would he have been up for even more serious surgery or has time come that he too feels he's been through enough? Is he actually physically/mentally well enough to start the ball rolling again? There could be the opportunity to seek a second opinion from a different t/p unit BUT he has been through so much now with all these years of trauma and surgeries, he may not actually want to go again.

You have all been through so much, it's tragic that he hasn't had loads of years of stability after the initial transplants but has had longer than anticipated when you were at touch and go state in 2014/15.

Thoughts very much with you all.

Katie

[Covid2020 in reply to AyrshireK]

Katie, his liver is actually holding well, blood counts and all. His kidneys have taken a hit with all these infections, but isn’t doing too badly.

He really did want transplant they took a second opinion from Kings and they agreed with the hospital.

The initial MDT agreed to transplant if infections cleared from the blood.

Their argument is that they have limited antibiotic options and he won’t survive tp 3.

[AndrewT]

At the risk, of sounding Patronising..... You Poor Lamb, ALL our Thoughts are with you BOTH. I Pray that your Husband Does 'Recover', enough for you to take him home at Least. (I'm certain that he would, far rather, End His Life surrounded by his Family.... and Loving Wife!)

I was going to end with 'wishing you well' but perhaps instead-

Our Prayers Are With You Both

AndrewT

[Covid2020 in reply to AndrewT]

Thank you for your kind words Andrew

[Covid2020]

Thank you

We were ready to bring him home for tomorrow but he has another yeast infection.

Waiting for this to clear…

[Readlots]

Hi, I’m so sorry to hear what you’re going through. My Mum died in July 2021 aged 75 of PBC. She was considered for transplant but was very frail and decided that the risk was too great. She was in hospital initially in March and the doctors there made a palliative care referral. She came home a couple of days later. The local hospice made contact, came to visit, talked about her care needs and wishes then coordinated everything going forward. They got the community nurse team involved who got occupational therapy involved. They sorted out all the equipment we needed. The community nurse was fantastic at identifying what Mum needed before she needed it and asking Occ. Health yo provide it. She also put in a referral for carers and then for Marie Curie overnight care 4 times a week to give me a break. We also had support from dieticians, our GP on the medication front and general support. She died peacefully at home in a hospital bed with me and my brother by her side in July. It was hard emotionally and physically but better than her being in hospital. Mum said repeatedly, “I wouldn’t have got this level of care in hospital would I”. I know that every area is different, we are in Suffolk, but I hope this gives you some idea of what to ask for and what to expect.

[Covid2020 in reply to Readlots]

I’m so sorry for your loss hun, I am at such a loss as only 5 months ago we were planning to do lots together…

Thank you so much for sharing…

[Readlots in reply to Covid2020]

You’re very welcome. My advice would be to do as much as you can while mobility allows. Simple pleasures take on much more significance at times like this.

[Millie09]

hello pear shaped

I have followed you on here since joining myself back in 2017 .. and luckily still here.

Im so so very sorry to hear of what is happening, life can be cruel at times can't it

the journey is always a rollercoaerer ride ,especially where liver issues are concerned, but your both in my thoughts and prayers ,sending you strength and big ( hugs ) .whatever the outcome please take care of yourself

you have and still are an amazing support to hubby

I really hope that maybe things will improve and maybe then they will reconsider tp 3 .

my very best wishes to you

Linda x

[Covid2020 in reply to Millie09]

Thank you for your kind words Millie, it’s nice to see a few familiar faces here.

I often think of you all and even read all the old posts, it reminds you of those very difficult moments. And now this… just cannot accept that they knew about this 2 years ago and apart from failed stent and a decision not to do repair, nothing was done to try and find an answer…

Love and hugs to all

[Millie09 in reply to Covid2020]

your most welcome pear shaped,

I myself go over the old posts , usually as a reminder like yourselves of the difficulties this disease can bring ahead all of a sudden

hoe terribly frustrating!!! I would want answers to this and fast ..

my best wishes

Linda

[Covid2020]

Hello Millie!

We have been completely shocked with the way this has panned out… I want to speak to docs tomorrow to see if I can gain some clarity. It seems to me that he changes from week to week, but his prognosis seems to remain the same.

Watching him decaying away is truly heartbreaking, only 5 months back we planned to spend more time together.

I actually said to docs few weeks back, he didn’t choose to have blocked artery and he hasn’t chosen to have so many surgeries. So they need to stop talking to us like we have nothing better to do than to keep wanting more surgery. Also it feels as if they have got him to agree to no ITU and now they want to discharge him home. Last week pic line was not an option as he has yeast infection again, this week he has had it in as the need to go home out ways the risk of f the yeast sticking to the line.

I’m sorry I’m ranting!

[Millie09]

hi pear shaped,.please, you rant and vent away as much as you want, you have every right... myselfI would be feeling so very confused as non of the so called surgeries were asked for , they were just done ,as like most of us we think drs know what is the best option don't we ...

Can you go to PALS ?? start up a complaint as to not being happy with the way the treatment has been ?

I know how draining it all is as I went thought 18 months of my dad ,being his carer when having his lung removed due to cancer then it went to his brain ,I had questions answering to his treatment plan as something was amiss , needless to say the one Dr involved was given the sack

try stay strong , and if u need to talk at any time please PM me ,I'm usually here on forum a lot ,even if in the background.

oh have you asked for a second opinion at all ? I do hope you have some outside support in all of this

prayers and thoughts your way

Linda x