Fluid tablets

Hi, my son has decompensated chirros and is again In hospital, had ascites drained yesterday. Consultant is now looking for some rare disorder/disease, after 2 red flags flagged up, in his blood test.Dr has stopped the spironolactone but not saying, what they will replace it with. He is still awaiting for the chest drs to see him, as he has fluid in his chest, also but hes having platelets treatment atm, due to clotting issues. My son is seeing transplant team, on Monday. I'm totally living on my nerves. Any advice re; fluid tablets or anything else,.greatly received. Kindest regards, Annie

[Hidden]

Hi Buttonmadnannna

You may wish to contact the British Liver Trust helpline:

[e-mail] or telephone [phone] (Mon - Fri 10am-3pm).

Very best wishes.

[cammeag]

Hi. I was admitted March 2019 with decompensated and alcohol hepatitis, it was touch and go for 72 hours. Then it’s a waiting game. My kidneys failed so they couldn't give me fluid tablets, find out how your sons kidneys are doing.

You will get the feeling things are not moving fast enough but as long as your son now stays infection free and rests as much as possible there’s every chance his liver can hang on until the transplant team can sort him. Depending on his response to hospital care, he could hold out for anything from 1 month to 5 years.

I do hope things work out for you both. My email is cammeag at hot mail dot com if you want quicker responses from someone who has been there. Hope it all works out, David

[Hidden in reply to cammeag]

Hi David,

Thank you for your kind reply.

My son was initially admitted, in December 2019. He wasnt expected to survive the night. I cant tell you the hell we are going through, tho I expect you have a good idea...

Hes been on furosemide & spironolactone but furosemide was stopped in February and spironolactone was stopped yesterday, but they're not telling him why and as the hospital is on lock down, we aren't being told anything. But I'm going to contact him this morning, and tell him to ask about his kidney function. It was ok 2 weeks ago.

He is malnourished, despite the nourishment drinks and hes now staying with us permanently, so I know he's eating properly.

He has an appointment with the transplant team, this coming Monday. Just praying, that he holds on, I cant face the alternative.

Kindest regards,

Annie

[cammeag in reply to Hidden]

Hi B your son seems young to have decompensated liver so must have drank hard. It took me twenty years to obliterate mine.

I’m stating the obvious, but help he’s obviously off alcohol now, not even a glass, that will help with transplant team. The fact he’s home isn’t a good thing, digestive disease ward would be better. But, as he is, it’s the same rest and routine. Sleep may evade him as he will be tired, so relaxation sounds on YouTube actually help but we are all different. Ask for print out of his bloods, it’s good for doctors to see your keeping on top of things. I’m thinking of you both. This hasn’t been much use this email, I’m getting a tired day which often come with this disease but the good outweighs these tired ones. Tell him I send my regards and I’m not meddling...but any help he needs that I can help with I’m only too happy to help. I’m in the south coast Mr Brighton

Take care, David

[cammeag in reply to cammeag]

Mr#nr. 😊

[Hidden in reply to cammeag]

Hi David,

Thank you for your kind reply.

They found that he also has a disease, that may have contributed to his condition, but yes, the alcohol didnt help.

He hasn't touched a drop since 28th December & he was hardly drinking, then, hence, he had cut down.

He's not home, hes been back in hospital, since Monday. Hes on the gastro ward, his liver consultant has been fab!

The drs are on the ward now, so I've just told him to ask why they've taken him off of fluid meds, I'm thinking its kidney related but they need to tell him. As the hospital is on lock down too, we're not even allowed to visit, which is adding to the misery!!

He has his 1st appointment with the transplant team this coming Monday, but he is still under nourished, which they are tackling, as are we.

Just praying every day.

I'm broken

Annie xx

[cammeag in reply to Hidden]

I don’t know if your allowed, fruit doesn’t help calorie count, but a good bowl of it made up, if your allowed to drop it off, can only boost him. Furosemide is not good for the liver, but spiro ok so don’t understand that either. I used to take a herbal drink called noni(Miranda citrofolia the genuine one)and it helped in my opinion. It’s expensive. But your allowed to buy a bottle and get your money back if it doesn’t work you feel. It helps with detoxifying and underlying diseases.

Hated hospital on a Friday as the consultants and regular SNs disappear for the weekend. You are both in my prayers. I have to say, the transplant team being called in this early is not a good sign. Normally they won’t accommodate you unless the first year has passed.

Was the other disease haemochromatosis by any chance. Take care, David.

[Hidden in reply to cammeag]

We dropped off plenty of fruit yesterday, along with more clothes, but we weren't allowed to see him. I sobbed and sobbed.

He hasn't been told why spiro has been stopped but he has been put on iv Turlapresin 4 x a day.

I will chat to him about the herbal drink, thank you.

We know hes in a dire situation, his consultant has told him and us. Hes got him the appointment next week, to set the wheels in motion. We just need to keep him as well as we have so far, infection free and keep praying.

He doesnt have that disease. But will message you about it.

Thanks again,

Annie xxx

[ThreeSmiles in reply to Hidden]

🤞 and 🙏🏼 for you all that things improve Annie.

Miles

[cammeag in reply to Hidden]

Hi Annie, weekdays are slow enough, but weekends seem to take forever. I could never understand why consultants couldn’t work weekends, everybody else does. In the meantime when your in that situation just now, it must be ten times harder because of no visits and lockdown. I suppose your phone bills going through the roof at the moment.

It’s such a helpless situation. But every twenty four hour period that passes gives him(sorry don’t know his name) a tiny bit more hope. Let’s hope the week ahead shows some form of improvement for you and yours.

Take care Annie

David

[cammeag in reply to cammeag]

Sorry Annie, have they said there is internal bleeding from oesophageal veins causing low blood pressure ?

David

[Hidden in reply to cammeag]

Hi David,

My sons name is Kev. No he doesnt have any bleeding, but I've just been informed hes been moved to a side room, he has a temperature, high heart rate and they're doing bloods, checking for infection. Yes my phone bill is through the roof as are my nerves x

[Splodge60]

My heart goes out to you. Try to keep smiling and hoping. I wish your son well xx

[Hidden in reply to Splodge60]

Thank you x

[TT-2018]

I was on furosemide and spironolactone and was being drained up to 14 litres on a three weekly basis. I also regularly had IV platelets. The diuretics were stopped due to the adverse effects on my kidneys.

The ascities was managed by draining but I had to cope with the oedema.

Things finally cleared up after my transplant, best of luck moving forward, it’s definitely not easy to live with.

[Hidden in reply to TT-2018]

Thank you for your kind reply. My son sounds just like you. He's having platelets, too. Atm he also has fluid in his chest which they are planning to drain, but he also has his 1st appointment with transplant team, this coming Monday.

Just broken here,

Annie xx

[TT-2018 in reply to Hidden]

It’s difficult enough in normal circumstances and now you have the added burden of Covid 19. But it’s definitely great that he has the referral to the transplant hospital and they will set up the assessment for transplant. Due to my blood group, I waited 19 months, as a priority listing.

Be assured that you will receive the best possible care and take all the advice you are given. Diet and any form of exercise are so important right now.

Stay positive, lots of people here have come through this.

Best wishes,

Mark.

[Hidden in reply to TT-2018]

Bess you Mark, thank you. His consultant tho great, wasn't backwards in coming forwards, about what a dire situation hes now in. I dont know how we are coping, really I dont. Despite the grim diagnosis, I've repeatedly told our son to think positive thoughts as positive mind feeds a positive body...I pray every day that he will get a transplant,.we just cant face the alternative xxx

[davianne]

Hi Annie, I'm so sorry to hear that your Son has not improved. I hope and pray that he will improve with his treatment, and hopefully, in the very near future get a transplant. I know it's a very worrying time for you all, but please try and stay positive, and keep fighting for his transplant as in June, he will be 6 months dry, and eligible. Be sure to look after yourself too.

Take care and stay safe,

David

[Hidden in reply to davianne]

Thank you David,

He has been put on iv Turlapresin, 4 x a day. I'm reading up all i can about this, too. He was doing better when he was on furosemide & spironolactone but furosemide was stopped back in Feb, and everything has been up in the air, ever since!!

He has his 1st appointment with Addenbrookes on Tuesday, consultant arranged this, to get the wheels in motion.

Got to do everything to get him somewhat physically stronger, somehow...!!

Annie xxx

[davianne in reply to Hidden]

Hi Annie,

I have never had assessment for a transplant, but from what I have read on here, you have to be ill enough to get assessed, but well enough to go through the surgery....a very difficult situation to be in. I think though, that if the need is urgent, then physical assessment will not be an issue.

You are both in my thoughts and prayers for a good outcome on Tuesday,

Take care and stay safe,

David

[Hidden]

My son has been put on iv Turlapresin, 4 times a day. I'm still trying to learn all about this med, now...

[Bootandall]

Hi Annie,

I'm very sorry to hear of your son's illness. I can tell you are just shattered as l would be, my thoughts are with you and your family at this difficult time.

[Hidden in reply to Bootandall]

Thank you