Getting regular/routine Large Volume Paracentesis (LVP) for Ascities

[Dawnmedus]

Firstly, what a really informative forum, thank you.

I would like to help my friend who has decompensated cirrhosis (diagnosis in 2015) and has severe ascites requiring frequent LVP drains. It seems that the only way she is accessing this treatment is via the A&E or EAU route (whereby she is already in pain, breathless, unable to keep food down) and having to wait several hours or well into the next day on a trolley before a bed can be found on the appropriate ward to deal with her treatment.

Since the start of the year her condition has deteriorated and apart from the huge abdominal distension and swelling in her legs she is skeletal in appearance and now either walking with sticks or a frame or being wheelchair bound on bad days. I have tried to contact the hospital Dr who she is under and PALS but I wonder if there is anything else that can be done.

I am probably very naïve but I would have thought the LVP procedure would be more regular (she needs them weekly at least) and that pre-planned appointments be arranged for LVP drains and not having to go through A&E every time. She has other medical conditions and so her care regimen is very complicated due to this. She is being considered for TIPS procedure but the TIPS consultant wants to see her kidney function improve first. It seems like she is caught in a revolving door but not actually getting anywhere in the meantime her health is deteriorating and quality of life is very poor.

[AyrshireK]

Is your friend being considered for tranplant at all?  I would have thought with her level of decompensated cirrhosis she should be referred to a transplant unit for consideration for transplant although all that will depend on what her other health issues are as to whether transplant would be suitable or not.  Regardless of suitability for transplant she still needs to be receiving adequate care which from your description doesn't seem to be happening.

How often is she seeing a consultant? I would have anticipated with this degree of liver damage and symptoms she should be seeing a gastroenterologist or preferrably a hepatologist at least every 6 months, she should be having ultrasound scans every 6 months and also regular blood tests.

I have no experience of ascites other than witnessing it and the draining procedure in other patients during my hubbies stays in hospital but it shouldn't be getting left too long before drains.

She requires an URGENT consultation with the issue of the drains, potential TIPS and then referral to transplant unit need to be discussed.  Has she had an endoscopy to check for varices as well since these are also a potentially life threatening other symptom of the portal hypertension which is causing her ascites.  TIPS isn't a cure all and can potentially make issues such as Hepatic Encephalopathy become worse.

If you don't seem to be getting any joy by the roots you have tried a written letter requesting an urgent appointment might work, phonecalls can be ignored but a complaint or a query in writing can't be and can come back to 'bite them on the bottom' if something happens further along the line.  Letters remain in patient notes and i've found it stirred action in our case when appointments and referrals hadn't happened which were meant to.

Wishing you both lots of luck.

Katie

[Dawnmedus in reply to AyrshireK]

Thank you for your reply Katie,

She is under a gastroenterologist at her local hospital and has seen the TIPS consultant at a larger hospital.  

The diagnosis for her being confirmed as having decompensated cirrhosis was made in October 2015 and the option of her "being considered" for transplant was only talked about due to other issues needing to be addressed.  

However, since then due to many, many other health factors (I would rather not mention) - some of which date back to 2011 and more recently from April 2014 with her having a bleeding ulcer which required emergency surgery (fortunately she was already in hospital with ascites when she collapsed) have resulted in a further deterioration in her health.  

In the past year her doctor has had to stop giving her diuretic medication (which was addressing the ascites) as it had damaged her kidneys hence LVP has been her only treatment option for the fluid build up.  

In the past 12 months she has been in and out of hospital (mainly A&E route) strangulated bowel and for planned procedures - hernia and then abdominal wall repair/reinforcement to prevent further hernias.  However, in the last 6 months her visits to A&E have also been for the LVP and her having to wait for a bed on ward and then wait for slot for the LVP to be done by ultrasound guidance because of the hernia surgeries etc.   

The email I have sent to Dr's NHS sec but I have also copied in PALS.  I will give them a week but any other suggestions would be very helpful.

Thank you for your help, Katie.