External Drain, raising biliruben levels….
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He’s not doing great – they still don’t plan to do anything until tomorrow or the next day, but his bili levels are raising daily. I know it was in the 150’s 2 days ago and they will probably check it again today. He is more yellow now then at diagnosis, getting confused about little things (which is tough for me to see), and he isn’t feeling well at all… he said that he can’t explain what hurts or why he isn’t feeling right, but that there is something not right. Percocet doesn’t seem to be helping him with pain management, and it always has in the past.
We are all really hoping getting the drain looked at will help give him some relief, because it’s not nice seeing him so uncomfortable. Thank you for asking Kristin, I will keep you updated.
Jen
Jennifer, how is your father doing? Please let us know when you find something out. I’m keeping you both in my thoughts and prayers.
Kristin
Dad is in the hospital now. Apparently there’s a pretty good chance the procedure won’t get done until next week some time, but at least he’s where he needs to be… hopefully this can be figured out quickly and we find that it was just the drain and nothing more serious (not that this isn’t serious on it’s own)!! Thanks for the comments Kristin and Betsy – I appreciate it!! Will keep you updated.
Jennifer
I’m SO glad they’re giving this prompt attention, and I hope everything will be straightened out very soon. I was kept in the hospital after the replacement procedure because they thought I might have a septic infection, which in fact I did not, but better safe than sorry.
I was given conscious sedation both times. The first time it was OK (just uncomfortable) and the second time it wasn’t enough. Perhaps you can tell them about your dad’s concerns.
If it takes too long getting him admitted to the hospital and he gets worse, don’t hesitate to take him to the emergency room (or whatever you call it in Canada!) Biliary drains are not common, and I think some medical staff don’t realize how potentially dangerous a problem with them can be.
Wishing you both all the best– your dad has a wonderful, caring daughter!
Kristin
No temperature at all. Glad to hear you’ve been given anesthesia, because I really don’t understand why they would put him through that without SOMETHING! Hopefully he hears from the hospital today and gets in today or tomorrow… we all agree that this needs to be handled ASAP.
Thanks so much for the feedback… makes me feel a bit better that others have had issues with the drain and maybe I don’t automatically have to go into “worst case scenario” mode so quickly!!
Jen
Hi Jennifer,
By external drain, I’m assuming you mean internal stents attached to an external bag. I have 2 external drains and I agree that it needs immediate attention. I have had lots of problems with my drains getting “plugged” up with bile but I’ve never seen food come through the way you are describing. Does he have a temperature? I’ve always been sedated for the drain placement procedure – they give me a combination of versed (mild anesthesia) and fentanyl (pain relief).Betsy
Thank you so mch Kristin!!
That sounds like what’s going on – his tummy is swollen, and last night (for instance), we had lasagna for dinner and not 15 minutes later you could see lasagna remnents coming through!
They will be calling him as soon as their is a bed and keeping him as an in-patient — procedures tend to get done much quicker here if you are taking up a bed in the hospital… sad but true! Hopefully he gets a call today to go in.
Another question — are you put under or given some sort of sedation when they put in the drain? Dad has been completely awake both times, and it’s an agonizing procedure for him, so I think he’s really dreading having to get it done again. He said he thinks they need him to be awake so he can manipulate his tummy muscles a bit to help them get it in, but I’m just wondering what the norm is there… seems a bit cruel to me!It sounds to me like something has gone very wrong with the drain and he needs to go back to the doctor that put in the drain. You need to call that doctor’s office ASAP.
I had an external drain put in a couple weeks ago, and after about a week suddenly my belly was all swollen and the bandage was full of nasty goop (not bile.) The home health nurse sent me back to the hospital immediately. The doctor said the drain had shifted, which happens sometimes. They replaced it with a larger size and this one seems to be working fine– draining crazy amounts of bile.
Please, call the doctor when you read this, it could be infected.
Wishing you and your dad all the very best!
Kristin
Hi Everyone…
Just wondering if someone can maybe shed some light on the newest developments with Dad. He’s gone through a few rounds of chemo now (high dose week, low dose week, week off). He had been tolerating it fairly well (as well as can be expected, anyway), but has been feeling worse then usual the last few weeks (even though it was his low dose and week off)…
He ended up not being allowed to start the next round as his bili levels have gone up considerably (I can’t remember the exact number, but in the 130’s or 140’s, I believe – that’s really high, is it not)? They didn’t test his CA19-9, so not sure if that has gone up as well or not (but I assume they will do that with his blood work this week). He has an external drain (and has since diagnosis in late January), and since getting a new one just over a month or so ago, things just haven’t been going as well (he got a new one because they felt the one that was in wasn’t big enough or draining as much as it should have been). If he drinks tomato juice, it immediately goes red. If he drinks vanilla boost, it goes completely white. Is this normal, or does it seem like the drain must be out of place? I know with external drains you don’t get the nutrients you need, but does it literally just go through you this way? It’s not draining nearly as much as it used to either. Does it often happen that the drain is just not in properly, or do I need to prepare myself for the idea that they tumour may be growing and pushing it out of place?
He’s also had more abdominal pain and apparently can no longer feel his ribs (even though he’s only maybe 130 pounds or so). It sounds like percocet doesn’t help as much to take the edge off and it did before. What could be the cause?? Enlarging of the liver? Progression of the cancer into other parts of the body?? The drain just being out of place??
He will be going in (hopefully very soon) for them to figure out what is going on with the drain, and I think they will FINALLY try to figure out if a stent is possible, since it’s not something they have tried yet… I imagine if it’s progressing, that won’t be a possibility?
I hate thinking that this may be getting worse and the chemo just isn’t working, but I really need to try to emotionally prepare myself if that’s the case. Has anyone gone through something similar???
Thanks everyone – hope you are all doing well – thoughts and prayers go out to you all daily….Jennifer
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