Paracentesis experiences

Hi,

It's me again Jaykay. When I had my drain put in I had two local anaesthetic jags given to me before the drain was pushed in. A sedative was not offered, but wasn't really required. It was sore as the drain was pushed through, but the pain quickly went. Then the fluid drained off and the relief was there.

My drain, as you know, is designed to stay in and so far it is working well. 

I don't know why your place haven't discussed this method with you, maybe your fluid build up is so gradual that they don't see the point. Although, if mine was drained weekly instead of daily they would still keep the drain in. The drain in me is quite comfortable and no bother, except a bath is ruled out. Of course there is always a chance of infection, but I would have thought more so with colostomy bags, etc. It only takes them about 5 minutes to actually drain me. The whole procedure takes about 15 minutes, and I lie on my couch as the district nurse does it. 

But ask them about a local anaesthetic jab.

Hope you get on all right

Lots of love 

Alison 

Hi Alison

Thanks for telling me more about your experience of the procedure.  I'm glad that you found it no more than "sore" when the drain was pushed through.  Although I had local anaesthetic, the first two times I had the procedure were unpleasant but the third time was definitely very painful and is certainly not an experience I want repeated. 

When I had a port implanted (which was before my third paracentesis) I had sedation which made the whole procedure pain and distress free, so I would like a pain and distress free paracentesis too!

I feel that in some circumstances we are expected just to tolerate unnecessary pain because it is more convenient for the hospitals, and that patients find it difficult to give feedback about unnecessary pain, either because they are so ill (as I've been on the previous occasions) or through fear of how they might subsequently be treated if the healthcare professionals react defensively.

I did raise the possibility of a PleurX drain about 6 months ago but it was felt that it wasn't appropriate for me at the moment, and I agree with that, but I'm glad to hear that yours seems to be working for you.

With love

Hi

I don’t have anything useful to add. Just an outstretched virtual hand ready to hold yours should you need it. I’m sorry you’re facing another horrid procedure. 

Love and hugs xxx

Thanks.  I'm actually feeling delighted that I've managed to arrange for paracentesis to be done on Friday (possibly into Sat too) in the hospice.

For weeks I've been trying to get an acceptable plan in place but going round in circles, never being able to speak to people who would consider my needs holistically, falling through the net etc.  Until today I had been told that my options were

• Doing nothing (but if past experiences are a guide then the fluid would still accumulate, I'd have uncontrollable vomiting and breathlessness, so not a realistic option)
• Having the procedure done as a day patient but without sedation (i.e. unnecessary pain)
• Admitting myself as an emergency on an inpatient basis so I could have sedation, but no guarantee when it would happen, which ward I'd be on (if I was lucky enough to avoid a trolley in a corridor) etc.  All my instincts and past experience tell me to avoid emergency admissions as hospitals are more dangerous places in those circumstances.  Also, far more difficult for my family who would need to come back from London to be around for an unknown period of time.  (About 18 months ago I spent 18 days as an inpatient for a similar situation and it took me months to recover.)

All of the above scared me!

After trying to communicate with everyone I possibly could, I was given a meeting with the Director of Medical Services at the hospice and it was wonderful that he listened to me, took into account the whole situation, asked me what the ideal scenario was for me and then offered it to me!  I didn't really think that asking for a planned procedure to be done with sedation should be asking for too much, but it obviously is with the hospital systems.

Who would have thought I could be so happy about the prospect of having a horrid procedure done in a hospice - but given the alternatives I'd been offered I feel so relieved!  Just hope it actually goes OK.

That’s brilliant . I hope it goes smoothly and pain free and that you get hospice cake too. 

Xxx

Hi Jaykay 

It was a bit more than just 'sore', if I'm honest, but is was quick, at least I would say that. But the agony the fluid was causing me - I wasn't caring too much about a momentary spike in pain, if you get my drift!

Sedation as far as I know needs some anaesthetist input, at least it does when you get sedation for an endoscopy. Maybe they have a problem with that where you are? But I totally agree with you, are they saying 'tough' to your pain? They flippin shouldn't! You have the experience so you know what you are talking about. Keep on at them.

Do you have a Macmillan nurse who could liase for you? Or would your gp do something? Worth asking. I have had good help from my Macmillan nurse God Bless them.

Good luck again!!

Love

Alison xxx 

Ditto

xxxx

Hi Jaykay 

I didn't see your post about the latest developments, how, I don't know! It is a lengthy post!

Anyway I am so glad to have read it. You are in good, experienced hands, who can 'make things happen'. I hope they tailor everything to meet your needs, which I am sure they will, as that is what they are like. 

This time it should go well. Is it a tube they insert, yeah? Or a needle? Anyway, you will feel so much better with the fluid out.

Lots of love

Alison xxx 

Hi and

I'm pleased to say that I'm home now from the hospice and as far as I can tell the draining (only 4.5 litres this time) seems to have gone well.  That equates to about the weight of my son when he was born so hopefully it should be enough to ease my symptoms.

I was initially given a sedative subcutaneously to see whether that would be sufficient but after about an hour my mind was still able to do a su doku so it was agreed that I could have IV sedation too.  It was wonderful in that whatever pain or discomfort I might have experienced I completely forgot!   The first real thing I remember was being brought lunch and offered wine (which I had to wait for about 30 minutes before drinking).  And I was also able to enjoy some hospice cake later in the afternoon.

Having seen the length of the tubing that came out of me after the draining had finished it surprises me that sedation isn't offered routinely.

What a world of difference between hospice and hospital care.

Wow, Jaykay, you are so right, the hospice want to attend to you carefully, and in a holistic way. That's how it should be! 

You are like me, I had 3.5 litres off at first, then more the next day. What a relief, eh? I am so glad you now have this as a route. You know what works!

That's the thing about sedation, you are completely 'out' but you can't remember anything, so what the heck. 

You have a good rest my lovely and enjoy.

Lots of love 

Alison xxx