Paul Lockyer
Posted by

Ascites & plural fluid not nice !

Paul Lockyer
Posted by
03 Dec 2015

I got a taste of what it must feel like to be pregnant ! My belly would swell under the pressure of the Ascites fluid it wasn't pleasant. I had the drain fitted so many times l talked the doctor through it by the end.j

Toward the middle of September l started to find myself short of breath & my food didn't seem to go down easily. My stomach was swelling, l have got to add that it was extremely uncomfortable. Eventually this was diagnosed as Ascites fluid (stomach) & Plural fluid (lungs).

A day that certainly caused a stir in the Haematology Unit was the "baby scan", having had an Ultrasound scan it was a shame to go back without a picture !! so l downloaded a picture of a "baby" off the internet, Oh my, laugh ! everyone in there was crying.

The short term solution was to drain the fluids relieving the pressure on my organs. One of the things pointed out when first diagnosed with Leukaemia was an enlarged spleen, you could feel it hanging below my ribs. The fluid on my lungs was pushing my spleen further down leading the doctors to think it was getting larger, not good. 

It is not the best feeling in the world when the doctors fit a drain into your stomach they actually feel for the "popping" of your inner wall to know when to withdraw the steel guide rod. At this point the fun starts as rod withdraws the flood gate opens & its a rush to bag it off ! (sorry if this is all a bit graphic). The fluid was only supposed to drain for six hours (to reduce the risk of infection) but it was still there two days later. 

Chemotherapy continued during this time, sometimes l had fluid drains in the morning & chemo in the afternoon. I remember one time they decided to extract some plural fluid through my back with a syringe, l had to sit perfectly still while the nurse put a needle through my ribs then proceeded to draw off one litre of fluid sixty millilitres at a time !

Having confirmed the fluids showed positive signs of Leukaemia l was referred to the Royal Marsden where they had a consultant that specialised in my particular problem. The initial prognosis did not appear too favourable and it was recommended I should have Pentostatin introduced into my regime. This would be given four times to start with monitoring my progress with four further treatments if it was proving successful. 

I still needed the draining for a couple of weeks..... On what proved to be the last occasion, I had drains put into both lungs through my back & stomach, the fluid was coming off so fast the little nurse could not empty the bags quick enough.... They measured three litres plural & six litres of ascites fluids.

This was where I reached rock bottom!!.... One morning while getting dressed I looked at the wounds from the several draining episodes and decided enough was enough.... fighting the good fight from here on !!

 

Comments

10.12.2015

Paul,

The fluid build up sounds horrendous and incredibly painful and is not something that I'd heard anything much about before. Was it a side-effect of the chemo or the leukaemia that was causing it?

Given the pain you must have been in and the evasiveness of the drain insertions I'm not suprised in the slightest that you reached such a low ebb. Thank goodness you had your wife with you to support you along with your enormous pools of inner strength.

You're an inspiration and I really hope that you're now doing well?

Andy

20.12.2015

Hi Andy, reading about the ascites fluid there are different causes for this, some to do with the liver not working correctly or it could have been as you suggest caused by the Leukaemia. This is l think the most likely cause for me as l had plural fluid also. I didn't really have time to worry about the cause, the doctors moved forward with my treatment at such a pace there was always something else to keep us occupied.