February 18, 2018 at 11:05 am #96644
Thanks for the update on your mum and huge GRRRR to more bugs. And also a massive GRRRRR to hospital food as well! I know all about the bad hospital food from the amount of time my mum spends in hosp and like in Canada it is the same here in Scotland as well, not nice. And often, not hot enough either. Hopefully your mum will get home very soon indeed.
Glad though to hear that you say that your mum is doing better now that the drain is in and that her pain is better as well. Lets keep the fingers crossed that this continues for your mum and hopefully as well she will be able to get back to the chemo ASAP! Loads of positive wishes coming you and your mums way from over here too.
GavinFebruary 17, 2018 at 10:48 pm #96642
Hi my CC family,
She had the drain placed. It’s an internal-external drain and it will be permanent in her case. The decision became easy once she had positive blood cultures for yet another bug (3 different gram negative bugs in 3 weeks). She is doing better, still in hospital, but her pain has improved since drain placement. I hope she can get back to chemo soon since she has been off it since mid January which makes me nervous. And I hope she is discharged soon because hospital food (in Canada) looks like fresh vomit on a plate:( My poor mommy.
Love you all,
FayFebruary 12, 2018 at 9:25 pm #96627
She is hesitant because it may cause her more pain (not the drain placement procedure itself, but life with a drain) and that is likely what turns her off the most from the idea of consenting to getting a drain. Can anyone who has a drain please comment about the pain factor? Is it an additional source of pain and discomfort?
FayFebruary 11, 2018 at 11:02 am #96621
No apologies what so ever are needed!!! Glad that Karen has messaged you and hopefully she will be able to offer more input than I could, thanks Karen!
My dad had a metal stent put in and that was permanent and he also had a drain at the time, but that was not permanent and was just in for a bit whilst he was in the hospital. Let us all know what happens with your mum with all of this if you can.
GavinFebruary 11, 2018 at 8:43 am #96615karendParticipant
I sent you a private message as I’m having trouble posting again!
-KarenFebruary 10, 2018 at 11:03 pm #96610
Thank you Mary. We were told that stenting (extrahepatically where the issue is) is not an option in view of her post op anatomy (ERCP is not possible). I asked if they can place a stent intrahepatically (instead of a drain), and they said not likely.
FayFebruary 10, 2018 at 10:33 pm #96609bglassModerator
Regretfully, I don’t have a lot to offer to this discussion as I am not very familiar with stenting issues. But I have a question – what is the alternative(s) being offered if your mom does not elect the permanent drain?
I went rooting around the internet and found a 2014 open access meta study (study of studies) comparing percutaneous transhepatic biliary drains with the more usual scenting.
Hoping other readers with first-hand experience chime in.
This cannot be easy for your mom – I hope the doctors are on top of things and that you both get good advice from your hepatobiliary doctors so she gets relief from the recurring infections.
Take care, regards, Mary
February 10, 2018 at 9:00 pm #96608
- This reply was modified 3 years, 7 months ago by bglass. Reason: spell check turned “stenting” into “scenting”!
Thank you Gavin and Joe. I should have been more specific, my apologies. I was referring to a percutaneus transhepatic biliary drain – into her liver to help drain the intrahepatic bile ducts which are backed up secondary to extrahepatic tumor growth. We were told if the drain is put in, it’s permanent. So we are currently trying to weigh the pros and cons of this procedure. Thank you for your input.
FayFebruary 10, 2018 at 3:18 pm #96607jpmskiParticipant
I’m not 100% sure what you are talking about. External drains? If so, my mother had two. If you are talking about a metal drain that they put in via an ERCP, then yes I think those are permanent.
1) As far as external drains, I’m not an expert on all of this, but I didn’t see anything to make me think the drains have to be permanent. They are just a plastic tube inserted through the skin into the liver, I’m going to guess if you pull them out it would all grow back together.
The good thing about them is they can help keep the bilirubin number more under control, quickly. The bad thing is they have to be changed out at least every 6 weeks, because they do get clogged.
2) Not really, the tube are attached to little bags that need to be drain once a day. They’re not very big and you just pin them to your clothes.
3) It will either be neutral or a positive for the cancer treatments, in my opinion. If an internal stent gets clogged you may not know it until the bilirubin spike, and then it may take time to get in and have it fixed. And if the bilirubin gets too high as a result of the clogged stent they may stop treatment until the bilirubin comes down.
With the drains I feel you have a better chance to prevent that. The swapping out of the drains if they get clogged is not nearly as big of a procedure as an ERCP. Don’t get me wrong, they’re not nothing procedures, but ERCPs wrecked my mother.
Again, all in my uneducated opinion. Good luck.
JoeFebruary 10, 2018 at 11:30 am #96606
Sorry to hear this news about your mum and you are asking the right questions here. I wish that I could help with sharing experiences from my dad here but he never had a drain so there is nothing on a personal note that I can share here. I hope that others can chime in with theirs or their loved ones experiences with drains and infections etc.
I’m not to sure about these drains having to be permanent but hopefully Karend will be able to answer that question better for you. Karen?
As to the drain affecting future treatments, again I can not really answer this but if the drain is permanent then perhaps so but not sure. The quality of life question is one that I think that someone who has experience of having a drain would really only be able to answer with their experiences, but I would think that having the drain in would have some impact on quality of life.
Have you done a search of the boards for drain issues Fay as I know that there are loads of postings on the site from people about drains etc? Sorry that I cant really be of more help Fay but wanted to at least have a stab at answering and helping if I could.
Hopefully others will be able to chime in with some thoughts as well and please let us know how things go with this for your mum.
GavinFebruary 8, 2018 at 9:26 pm #96600
Dear CC family,
My mom got admitted for the third time since she is bacteremic again (last time with E. Coli, this time with klebsiella). These admissions and readmissions are over a ten day period. Source is believed to be biliary related bacterial translocation. They have offered the option of drain placement for better source control, but they told her it would be ‘permanent’ which scared her. We were told once it’s in, removal is too risky as it will serve as another entry point for bacteria to access her blood again. This is all per the internal medicine team. We still need to speak with the hepatobiliary team. Her questions for me were :
1) Does drain placement have to be a permanent thing?
2) Quality of life questions with a drain in place
3) Will it effect her cancer treatments?
I hope to hear about your thoughts and experiences with drain placement to address the issue of bacterial translocation and infection with respect to this disease. And if you would recommend it.
Love you all,
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