Well girls, just giving you feedback on having permanent abdominal port inserted.
Has ascites building and sloshing around 3 rd time ... Requested permanent port so we can tap off water at home as and when.
All went well, piece of cake... Much slower to drain as small bore needle but 1.5 litres already. Trying to help so have bum up in air ( reminds me of conception x lol ) and filled the bag ????so those of you who need regular draining ask for a permanent port and this is easily drained..... Still on alvastin and oral chemo as ca 125 up at 2200! No tumours seen on CT scan ! Bizarre x that's all for now from my hospital bed x
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MidwifeGill
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Hi Gill! Glad u are having something to help to drain the ascites. Not as much fun as conception, eh? It all makes coping a bit easier. How are you feeling in yourself? Hope it's not too bad at the moment.
Hi Wendy... Home now and feeling bruised and battered I. Surgery site but 1500ml lighter ?? in myself as positive as always x everyday holds he possibility of a miracle x here and waiting x
Hi Gill, anything that makes life easier. I've only needed drained twice, 13ltrs first time 5 1/2 four weeks later, that was last year hope it will be the last.
OMG 13.5 litres, how did you manage to walk? My first drainage with diagnosis was 5.5 litres and that was awful! I have such terrible memories of removal... They did it wrong and didn't release the pigs tail ending... Screamed the place down!!! Chemo normally gets rid of ascites but I am platinum resistant so we'll be juggling formulas.. Ascites still building with these oral chemo tablets x
You too! No one knew how to release the pig tail valve here either. Poor little houseman (actually a girl in hijab) must have been very shocked by my language! I do not know how many litres as the drain leaked but I was 12lb lighter when I got home! I think my yells were audible in Hull!
I was like a beached whale Gill. Could only waddle, and couldn't lie down, it felt as though I was drowning. I didn't feel a thing when they inserted the drain, I was just so relieved as up until it was done they weren't sure if they were going to do it. I assured them that I would not be leaving until they did so they could suit themselves, I had a be on the ward and was not going anywhere. It was drained over the weekend.
It must be a relief not having to go back and forth to have it drained. I think I'm having another build up, had last chemo in Oct and due to start again next month but that could be sooner.
As soon as chemo wears off, so every few months! Seem to be on continuous chemo.... Interesting that you are already booked to start again.. How does that happen?
All sounds good, pleased that it was relatively easy, a permanent port sounds a good idea.
I've never had much fluid so have no idea what it feels like, I had to have what little I had originally drained vaginally for testing as there was so little.
Sounds like a smart move, may be lots easier if this is a regular thing. Had drains a couple of times and the procedure was far worse than when I had an IP port. Only thing I would say is to be really careful when you head home - i found that the slightest nudge could irritate the site and take quite a while to calm down - you be v vocal if it gets uncomfortable... In the meantime enjoy the relief! Hope M solves that CA125 mystery soon for you.
I had 2 sites for some reasons the go in one place and run a tube to the actual port under the skin, wher they have cut a larger incision, right? I never could figure out why. Double the healing points. Not surprised you feel battered, the whole ascites thing was exhausting anyway I found. you need to crash out and sleep I think
Love thought of you with bum in air thinking of conception! Reminds me of a 1960's joke about pregnant girl asking Dr what position she'll be in when baby is born! Same as when you conceived says Dr! OMGsays girl, do I have to have it with me legs out of the car window?
Hope that brings a smile as you endure the discomfort!
Hope the self drainage continues to go well Gill. Keep us posted. I looked 9 months pregnant by the time I was drained and would definitely be interested in this if it became a persistant problem.
Me too Mary and, at 69, that was no joke! I am now keeping to the Slimming world diet so that any unexpected weight gain can be spotted early and dealt with severely! LOL!
I have had a permanent drain fitted for 14 months now much easier than repeat visits to hospital. So glad I had this done as at the time was draining 1 ltr every 3/4 days, but at the moment it is only draining once a week sometimes not a lot. Much easier being in control.
Hi jean... That is a lot of ascites! Glad the port is helping. I had a mini port in my arm for I v access and I am SO grateful for that too x it's all about managing this disease x
It's good to learn about all these things should I need them in the future - the power of sharing. Am getting ct result tomorrow which was taken after chemo no 4 and I am very lucky not to have had as cites at all. Good luck with the port I'm all for ports my picc line has been great.
I hope its all still going well Gill now you are home.
Having my ascities drained made me think of my very own wine box., Yes pretty disgusting but I hope you are getting to grips with it. I'm impressed that Jean has had one for 14 months.
What is your oral chemo called? Always keen to know what is coming up next.
I didn't know they did perminent abdominal drain ports. It's something to know for the future! My last one hurt like hell coming out, so maybe the pigs tail ending was the problem there. Mind you, it hurt like hell going in too, so maybe it the uh doing it was a butcher at heart! My worst case of ascities was 13 litres too. I felt like a beached whale and waddled along, so it was a big relief to get rid! My oncologist has tried me on diuretics to try to slow the build up. It certainly seems to have worked, I gather there is some abdominal fluid, but not enough to worry about, so that's great. Prevention is much better than cure
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you need to crash out and sleep I think 
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