Post transplant problem

[BarryWright]

I still have my pd tube from dialysis . Twelve months ago I had a transplant. But I still have my tube because I have to drain off at least 3 to4 litres of fluid every 3days. This fluid is known as chyle. Anyone else experiencing this problem and is there a cure ?

LATEST: Had an appointment with surgeon at Freeman’s hospital and am going in next week for a fortnight to be drip fed and nil by mouth in an attempt to dry up the chyle and heal the leak.

[Christine501]

HI Barry, I had my Transplant in Jul 20, and my surgeon removed my PD tube at the same time. I had been off PD for a couple of months as my own Kidneys were still working, but as I was down to EGFR 9, I was due to go back on PD, but luckily got 'The Call'. Sorry to hear that you still have your PD tube - I am very happy to be rid of it. I was not advised pre-transplant of needing to retain the tube, but I assume it would be kept sometimes just in case of rejection. Has your Nephrologist explained fully why in your case it has been retained? My current EGFR range is on average 53, and my new Kidney is going well. Unfortunately I have had lots of side-effects from my tablets, and ended up in HDU with Sepsis, then 5 days after discharge, back to A&E with Blood Clots on the Lungs. I now have some virus in my blood, so yet again I have had my tablets changed. My Nephrologist says some transplant patients have a smooth ride post-transplant, and others can have a bumpy ride for the first year. I am in the latter category, but it is a price worth paying - I hope you will be able to get the tube out soon. Good Luck!

[BarryWright in reply to Christine501]

Had to retain the tube just in case which was just as well. So I am draining off this fluid every third day which amounts to 4 litres. I’ve tried lengthening the days but it goes up to 7 litres and this is very uncomfortable. No one seems to know why this is happening hence my appointment at freeman’s tomorrow to see a surgeon, which I am not looking forward to. Thank you for your reply.

[Christine501 in reply to BarryWright]

Hi Barry, Have you been told to keep your fluid intake up? Immediately post-transplant I had to take 4 litres daily, but am now 2-2.5 Litres daily, which is no problem. I hope your appointment brings some resolution.

[BarryWright in reply to Christine501]

Hi Christine , yes I was told to increase my fluid intake and then to reduce it. As you say, I hope I get some answers tomorrow .

[BettysMom in reply to BarryWright]

Did you get some answers from the surgeon, Barry? What you are describing is chylous ascites. This is caused by disruption of lymph channels, probably during your transplant surgery. It's a serious problem. I hope it can be resolved. Best of luck.

[BarryWright in reply to BettysMom]

Surgeon not sure what to do yet, he’s going to check scans and order some more. When this is done he’ll have a case conference with the renal team to see what can be done.

[BarryWright in reply to BarryWright]

Hi BettysMom, thanks for the information, I now have a better understanding of this condition. It’s quite scary but at least I know what could be ahead.

[BettysMom in reply to BarryWright]

You are very welcome. You have my best wishes for a speedy resolution of your problem. ....Sharon

[BarryWright in reply to BettysMom]

Thanks Sharon