Me again. My partner still has major discomfort with his ascites. The doctor won't increase his Spiro following his blood test last Monday. He is having another blood test tomorrow and the following Monday. My question is, is it normal for ascites to be this bad for this long? He literally is getting out of bed to use the toilet and go to the doctors, otherwise he's lying in bed the whole time. His mood is deteriorating and he says he can't sit up to eat or watch TV or anything. It's getting on for a month since the ascites started. Is there light at the end of the tunnel? Should it be this bad?it looks to me as though the swelling has gone a little but he says he feels no better. He is very tired. Gets out of breath quickly and sleeps a lot. His hearing has also deteriorated, although that's probably unrelated. I'm very worried, stressed and tired too. Thanks for reading.
You poor things, I had 9litres of fluids drained on two separate occasions this time last year. Very debilitating for about 3months until they finally drained it! Haven't had a recurrence, however they did increase my spironolactone to 300ml until it started interfering with my kidney function. I can feel it creeping back now but have a scan Thursday. I was wondering how much your partner is taking now?
Hi. Thank you for responding and I hope your appointment goes well.He is on 100mg and his kidneys are 'brilliant' according to the doctor, so not sure why they won't increase it.
I don't wish the frighten anyone here but if ascites remains untreated it could become fatal.
It can cause peritonitis, blood sepsis, kidney failure. Other conditions can arise. The build-up of fluid can push certain organs from the diaphragm up into/under the ribcage. This then can have an impact on lung capacity and cause problems in breathing. It also can put a greater strain on the heart.
One of the criteria for having a liver transplant is to improve a person’s quality of life. I would have thought that by not doing anything to improve your partners quality of life is being detrimental to his health and wellbeing.
I would be asking strong questions, and be demanding answers. Is there an underlying reason why his ascites is not being treated? Why is he being denied treatment? Why is his healthcare being allowed to be compromised? If all this fails, I’d demand an answer in writing.
There is also a healthcare watchdog type of support you can speak to. This organisation is called “HealthWatch”. They step in when things go wrong and try to sort them out: healthwatch.co.uk/ just enter your postcode and you’ll be given details of your local HealthWatch office.
As a last resort, go to A&E as this untreated buildup can become life-threatening.
Thanks Richard, he is being treated, I'm just concerned the tablets aren't working. General concensus seems to be it may take 3 months to clear on spiro. They won't increase the dose because his sodium is too high...Thanks,
As someone who had ascites drained on a few occasions (25 litres+, albeit 4 years ago), I can share that mines was present for a period of time before it even got diagnosed. I had very similar issues to your partner in not being able to sit up (but lying flat was also uncomfortable), feeling tired etc.
I had that draining or paracentesis as it is medically known a few times to relieve this pressure after which I ended up having a TIPS procedure (I have Budd-Chiari syndrome and you can find my story on the British Liver Trust website). TIPS has kept things in balance with regular ultrasounds etc. I was on 200mg Spiro daily AND 80mg Furosemide daily before TIPS but they may not want to increase it because potential damage elsewhere to other organs - I currently take Co-Amilofruse which keeps things ticking over better than the Spiro/Furosemide did, but that's just my personal background.
Once the ascitic fluid drains then a CT/Ultrasound could be useful, alongside a biopsy, to see if there are any underlying liver conditions causing this. I would certainly suggest that if things don't improve soon that you push for admission or at least temporary draining to relieve pressure, if these can't be done through your appointment then A&E may be a last resort as another person commented.
I wish you both well and please feel free to get in touch!
Many thanks for your reply. I didn't give the full details as have posted before and didn't want to bore people 🙄He has end stage cirrhosis, portal hypertension, enlarged spleen and a hernia. The ascites is recent. He did have it about 7 years ago when he was first diagnosed with stage 4 cirrhosis etc. We weren't together then so I don't know the full details.
I appreciate your reply. I'm worried about him but the medical team and doctor don't seem too bothered. They're obviously more used to it.
They tried to drain it in hospital. He was in for 6 days and has been home for about 10 days. They couldn't get it to work after 2 attempts so gave him spiro instead. They let him out while he was this poorly so they won't want him back. His breathing is a struggle too and his skin is ashen but yellowish. Best wishes, K
Not a problem. Portal hypertension was something I was checked for (although nothing was found), and I too had splenomegaly, so I can see some similarities. With the medical team it is a bit odd that they aren't as worried about it, I suppose the ascites could be explained by the cirrhosis but then there's the question of what are his next options if the diuretics don't work, what's their plan (assuming they have one...)?
It is a bit difficult to do the drain if they can't quite manage to find the right spot for it to work, however 100mg may not touch the sides (I note you mentioned high sodium however 3 months is a significant period of time for this to be ongoing and so what is the alternative?). I guess those are the questions I would be asking, especially if breathing is a struggle (this was the case for me and initially they thought I had a lung or heart problem because I complained of chest pain, especially when lying down, although what had in fact happened was ascites being so much that it had nowhere else to go).
As much as you can, keep pushing and asking questions...from my own experience I know that had I settled for the responses from my initial consultants I would've needed a transplant at least because they weren't going anywhere with it. It was only when I pushed to be transferred to a specialist liver unit did things progress, and it might be what you need to get this sorted as 3 months is a long time! For context, I was admitted on Halloween 2016 to a local hospital, discharged a few weeks later, readmitted a week before Christmas to the same hospital and then second week of Jan 2017 transferred to a liver unit where I was properly diagnosed, had the TIPS procedure and then discharged late Jan 2017 - spent a total of 59 days as an inpatient - ideally it should be a lot less for both me and I hope for your partner too!
M
We're waiting for a liver specialist appointment to come through. Maybe once I have a consultant to question we may get some answers. They told him at the hospital if he carried on the way he was (drinking) he would only have 2-3 months to live. 😳😕Thanks again and I wish you a long and happy future 😊
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