So, it seems that I have to have a Stent fitted following a mismatch of the bile ducts between me and my donors liver.
I'm OK with how it's done etc., but we're going away for a weeks break 3 days later and am hoping that someone could tell me if the recovery is any different from the usual banding procedure.
I've had to cancel so many holidays this past year and we both really need a break.
My transplant was back I'm January this year.
You guys are great.
Mike X
Dear Mike,
I would strongly recommend that you speak to the transplant coordinators about this... Failing that -you could send an urgent email via the secretary/pathway coordinator for your transplant doctor. They would be able to advise you accordingly. I have found email responses to be a lot quicker than phone calls.
I do hope you get to go on holiday.
Lots of love,
Pear
Thanks Pear, the ERCP isn't till the 24th August and the holiday is just in Norfolk, not abroad, so I've got a few weeks and yes, I'll ring the coordinators tomorrow.
The ERCP doesn't doesn't scare me, I've had plenty of Endoscopies for examination and banding. I know that there must be somebody else who has also had a stent fitted and just wanted to hear their experience of recovery.
Frustrating, isn't it, we don't know whether to book a holiday and risk losing the money. They do say not to let things stop us going away but getting insurance can be expensive for us.
Hope you're well Pear.
Mike XX
Dear Mike,
You words are so true! We are waiting for hubby to have a huge (and getting bigger as we speak) hernia repair operation - which should have been done by July but all sorts of things have delayed it. My husband desperately wants to go on holiday and can't because he is being closely monitored. We haven't been away for about 10 years - we did make it to Wales once - which the boys treated like a tropical holiday! Unfortunately due to the HE et al - we managed 36 hours and had to return.
Sorry for the rant!
Just wanted to say - I know how you feel. My husband had an ERCP - actually got Pancreatitis from it as they prodded the pancreatic duct too many times. I do know that this is rare and many have had pretty straightforward procedures - and like you say - it is very similar to the endoscopy procedure.
I do hope you get the answers you are looking for...
Yours truly,
Pear
Hi Grace.
I do value this site, like an extended family, all ready and willing to give support whenever it's needed. Humanity at its very best.
Your Gall stone sounds awful, I do hope that you are better now.
I am in a little pain but this is because I have a fracture in my T10 vertebrae (probably from the operation). No complications really from the stricture but they say that the duct will narrow further over time, so they want to fit the stent.
Thanks for responding Grace.
Mike X
Hi there Mike!
I'm having my stent put in on the 25th!
It sounds like there really is no down time.
I'm having mine put in because of high liver pressure and ascites.
For me, because of the high pressures, flying is a no go, but not sure for you!
I'm at Addenbrookes, and unlike our Sweet Pears experience, I've found the coordinators answer the calls or return them right away. We have a coordinator on call also, for when a patient calls out of hours. So, whichever you get the fastest response from?
I know it's normally a same day proceedure..they put you to sleep for it. I've got to be in the day before to get a drain first and also in case I need platlettes or a transfusion since both red and white cells seem to be out of whack..they dunno why? , lol
* they go in through your neck. They told me it's similar to the liver biopsy, as far as set up goes. I don't know if that info helps or not!
Good luck Sir! I'll be checking on here that day to see how you fared!
Cheering you on, as ever!
xxxxx
Kimberly
Hi Kimberley,
Many thanks for the kind response, as always, your knowledge and support is so very welcome.
They tell me that mine will be inserted by Endoscopy as the duct is accessible just through the stomach and a few cm beyond.
I don't really expect to be too poorly afterwards but I'm not sure. I know that the procedure will be paramount but I will be so upset if my Pam is cheated out of yet another holiday, last December, we had to cancel our 40th wedding anniversary party and holiday to the Dominican Republic. She never complained though, I didn't have long left so I guess she was just happy to be with me wherever.
I shouldn't moan, there are so many lovely people on here so much worse than I.
Hope you're well enough.
Mike XX
Mike!
You dear man, go ahead and moan! You've earned the right too, goodness knows! We are all allowed too!
I hope everything is good and you get that vacation! You and your wife have been married 40 years? How absolutely wonderful! I just love that!
You and I will have to compare notes afterwards.
Hugs!
xxxxx
Kimberly
Hehe, don't tempt me to moan Kimberley, that's an avalanche waiting to happen.
Yes, 40 years, we were childhood sweethearts and got married when I was 21 and Pam was 18.
Life is truly wonderful Kimberley.
Take care, I will be thinking of you when you have your TIPPS.
Mike XX
Hi Mike,
I have had stents 3 times, the first 2 times were easy peasy,on the removal of the third I got an infection (not completley unusual I gather) and I was down for 1 week on introvenous anti Biotics, feeling very sleepy and content to be lieing in my hospital bed.
So I am guessing here, but the odds are in your favour.....but be prepared for a problem in the back of your plans. Of course I am not a consultant!!! (but sometimes we feel like we are don't we? having been involved so deeply in the journey!)
Good luck. Charlie
Thanks Charlie,
Yes, now you mention it I do seem to remember you having said before that you've had the stent fitted. You've certainly reassured me as regards the recovery time.
Strangely enough, surgery doesn't worry me anymore, I suppose that with what we've been through, we get to the stage where we just accept whatever gets thrown at us. As I've said I really don't want to deprive my wife of yet another holiday.
Yes it's weird, how we get to know so much, certainly more than the GPs.
I do hope that you're feeling well these days. Thanks for responding Charlie.
Mike
Hi, I had a stent put in 3 yrs ago just before my bowel cancer op, I have Portal Hypertention, it was not safe for me otherwise,I have cirrhosis with regenerative nodules caused by my Diabeties, they go down the Jugular vein, it's called a liver Tipps, long name is Transjugular intrahepatic portosystemic shunt, quite a mouthful, I was in Hospital 3 days all together, my recovery was good, had no problems afterwards, I've had holidays every year since, I go through Staysure, they have been good with cover, I also have more health problems, but they never let me down, hope all goes okay for you, x
Hi there! You also have portal hypertension? I was just diagnosed with that myself. It's happening in my new liver. I m having the Tipps put in this month.
Is it ok for me to message you privately? I'd like to compare notes.. I realize we will have different reasons for having it, but it's very new for me, and a bit scary. I have blockages in my tributary veins that are in the liver itself, not the portal or hepatic vein. Mine are getting worse over time.
Did the stent cut the pressure for you? They seem to think it won't for me,but I am curious about it.
Thank you in advance !
Cheering you on!
xxxxx
Kimberly
Hi, thanks so much for responding. I don't have portal Hypertension since I had my transplant this January so that isn't the issue.
You've been through so much. Strange isn't it? We don't quite realise how strong we are, till we really need to be.
Thanks for the Staysure recommendation, I'll be looking into it.
Best wishes.
Mike XX
Rare liver/biliary condition
ERCP
Help re ERCP please 
Biliary Dyskinesia
biliary liver cirrhosis 2017
