Update from a worried mom.

[Charlieathome]

I didn't realise it has been two months when I first posted about my son. It has now been confirmed that he is now terminal .It really bought it home when his gp rang to say he had completed the D1500 form that has to be sent to the government I think he said. Anthony went into a nursing home last Thursday evening where is being very well looked after.As for Anthony he has the jaundice he is yellow which includes the whites of his eyes. His legs and feet are so swollen with the Odema his tummy so swollen he insists this week he does not need a drain, it is so painful for him, which I can understand but he needs all the rubbish his tummy is holding to be drain away. I can only go with his way of thinking, if I suggest anything he gets very defensive. He has ascites in his tummy area that are now leaking, it seems to happen at night the worst episode waking up Tuesday morning to see his bed and floor splattered with blood, They have told him this apparently what happens . He has been down to the hospital in Plymouth that start off the process for a liver transplant and is now waiting for an appointment to go again for three days to have all the tests etc to see if he would be up to having a transplant...so that is keeping him going. They struggle at the hospital, he goes weekly to be weighed and have his bloods taken, to find a vein to get any blood, so how he will stand up to all the tests I don't know..I think I do but don't want to admit it..

Thank you for letting ramble on, it does help to get it all out.

A very worried mom.🌻

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Charlieathome

We are sorry to read this. If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

Take Care

British Liver Trust

[Charlieathome in reply to BritishLiverTrust8]

Thank-you, yes we live in Devon. It is good to know you are there.

[Superbly in reply to Charlieathome]

hi Charlieathome

I have been there where you are now I had a very bad liver and I had alsorts trouble with my liver in the past but since 16 July 2021 I had a liver transplant which went well I am on the road to recovery let’s go back a little bit in time on 5 July is when I join the transplant list in the middle of Covid and by 16 July 2021 I had my liver transplant and spent one month in hospital I wanna say thank you to the family. Who let me carry on with my life. And thanks to royal free hospital.

[Charlieathome in reply to Superbly]

Thank you for your message, there is still hope. I am so happy thing are now going well for you. Again thank you.

[Dogbot]

so sorry to hear about your son’s condition, but please keep going the doctors are nurses can do wonderful things. But please ring the British liver trust they are fantastic people. Good luck to you and your son.

Stay safe All

Dogbot 🐶🌈

[Charlieathome in reply to Dogbot]

Thank you so much for taking time to reply. We are doing our best. Yes, I will call them today, I have a couple of questions I would like to ask. Thank you again.🌻

[Yellowsydney]

Hi, so sorry for what is happening. If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, thousands of people that have been in your situation, you will get lots of support.Hilary ❤

[Charlieathome in reply to Yellowsydney]

Thank you Hilary, I will have a go at joining.🌻

[Transplantboy]

Was in a similar situation 4years ago,I was drained often,then as my health deteroited I was rushed to Edinburgh to the transplant ward where I had to go through 2days of test's to see if I was fit enough for a transplant,breathing is checked,heart ultrasound,treadmill which is most difficult (for me),as it's about 10-15mins or on a bike this is done by anaesthetist who needs to see himself this test,and usual blood test,pressure oxygen levels and a few more,then a few day's later I was assessed by a team of doctors and surgeon's who made the decision I was fit for transplant and fortunately for me I received my new liver 4weeks later,forever grateful to my donar and his family,it's a process that is mentally draining for him and yourself as it's the what happens if they won't put me on the list,I wish you all well and hopefully he will receive the help he needs

[Charlieathome in reply to Transplantboy]

Thank you for taking time to reply. We are waiting for the 3 day stay appointment for the tests, but as I think I mentioned his veins are a struggle to get blood from. We remain hopeful until we are told no. Then another journey begins.. He has his off days mood wise he is being so well looked after at the nursing home We are very grateful for the place for him.I'm thinking the best plan is to go day by day as for me thinking ahead it is very scary, my son is confident and I do my best to make sure he stays that way..Thank you again 🌻

[Readlots]

Hi Charlie’s Mum, I can’t imagine what it must be like being told your child is terminally Ill, it was hard enough with my parents. Others have shown you that there is hope. He’s being well cared for so I think you’re right, take it a day at a time. As a Mum it’s hard not to try and fix things for your child. It’s probably as hard for you to see him this way as it is for him. I think just you being there, supporting his decisions and showing your love is all you can do now. (I know you’d magic up a liver and transplant it yourself if you could!) He knows how he feels and what he wants. The doctors are doing their thing. Fingers crossed for the next few days and a transplant after that.

[Charlieathome in reply to Readlots]

Thank you so much for your message. Yes it is tough, very tough, I am surprised at how many people have been or going thru their own journeys, if only for a magic wand for everyone.thank you again for your kind words.🌻

[Readlots in reply to Charlieathome]

You’re welcome, hang in there. 🌼

[Rshc]

Keeping everything crossed for transplant assessment. He needs to try and keep his strength up as they will want to know he is strong enough to cope.

[Charlieathome in reply to Rshc]

Thank-you 🌻

[bcsurfer]

HiIt seems at least hopeful that they are considering him a candidate for a transplant.

You mention that goal is what he is clinging on to. If that is the case, then he simply must do all that he can to play a part in making this a successful surgery. That means everything and anything and most obviously from what you have said, he absolutely must get that Ascites drained immediately.

If he isn't pulling his weight then a surgeon/consultant may take the view that there are more suited candidates for a transplant that are making a bigger effort.

I would implore you to encourage your son to up his game and get in the best shape possible for a new liver and a new life.

[Charlieathome in reply to bcsurfer]

Yes that is what we are clinging to, he is doing all he can as he well both of us know it is life line, without it and I dread to think he will only have a short time, with his GP completing the D1500 form confirms ( I understand) he has six months ,this is the official form for end of life. So he knows how important it is. Thank you for taking time to reply, it is appreciated. 🌻

[Dolly1001]

Hi there,

I read your post with tears falling, would think others did/do also!

How absolutely heartbreaking, to not just watch this happen, but to filling out awful forms, watching the progress of illness and praying there is someone, anyone, somewhere out there to help! I join the ranks of those praying for your son, yourself and your whole family.

Sadly, I have no great words and sage advice. But I can and do know that you also need support along with somewhere to turn when the going gets rough, we are here, there is a wonderful Facebook group, I think I’ve seen it mentioned. Your son has a wonderful team working for and with him.

The testing may feel quite gruelling, but we look towards the best outcome for him. As his mum, you are doing everything you can and just so supportive for him. Thank you very much for updating us. 🕊🌹

[Charlieathome in reply to Dolly1001]

Hi, I read your post and have tears also, thank you for your lovely words. I seem to be in auto pilot mode which does help I feel. It is also good to cry. I wish you a good weekend and thank you again..🌻

[Dolly1001]

Hi there, just wondering how your getting along? With the weather beginning to ease and the sun shining, hoping things are looking more “doable” for you guys. 🙏🕊🙏

[Charlieathome in reply to Dolly1001]

Hello, the situation is still the same.. he is in such a low mood at present it hurts to see im that way, I am still staying positive for him. Hopefully he will not have too long to wait for this appointment. Heaven know how he will be if they do not class him as fit enough to go forward for the op. Thank you for thinking of us, I really do appreciate the time you have taken to to write and send this post. I send my best wishes and thank you again.

[moggomereno in reply to Charlieathome]

hi. Just wondering and hoping things have improved. Praying for yous

Take care