October 28, 2010 at 2:26 am #41124lainyParticipant
Hi Mary. I think you had a beautiful drive with Tom on a beautiful day and it verified to you that you are doing good with the doctor you have. You may have always wondered and now that security is a good feeling. Guess all doctors are not created equal! Good luck to Tom for November 10th and just keep your fire hose ready but hope you don’t have to use it too often.October 28, 2010 at 12:58 am #41123
What the heck! I would be very annoyed with that doctor. I’m sorry you didn’t get more insight into Toms liver issues. And you can’t just say you think the cancer has returned just because of CA 19 levels. Im glad you posted because I was thinking of you and Tom. I do hope his stent removal goes well in November. Did you go to UPMC today? I know we discussed this before but would you ever consider heading north again to try the Cleveland Clinic?
BetsyOctober 27, 2010 at 9:26 pm #41122
Well, we wasted a beautiful day driving to Pittsburgh. I really don’t like it when a Dr. asks you why you are there after spending time and money sending a boatload of info ahead of the appointment. We weren’t really planning on switching Drs. anyway but really wanted some insight into these abscess issues and I don’t think that was even discussed. He’s just sure the cancer is back due to the rising ca19 and threw a lot of cold water on the whole transplant idea. Tom says he doesn’t have cancer in his liver anymore so I think I’ll choose to believe him. I honestly think he knows what’s going on just as well as anyone else. It is an interesting difference between surgeons vs. medical( internists). I prefer the surgeons approach personally. They seem like they run a tighter ship. Anyway, he will get his stents removed on Nov 10th and hopefully will not have any complications.I guess we will just keep putting out the fires as they pop up. As others have said before, “it is what it is!” Right now things are going well so we’ll enjoy these times and not worry. MaryOctober 21, 2010 at 5:35 pm #41121
Hope all goes well meeting with the new doctor.
BetsyOctober 21, 2010 at 3:25 pm #41120
It does sound like Tom and I are on similar tracks. The monthly “scans” are just blood work to follow the state of my liver chemistry – no CT scans or the like at this point. If the episodes start up again (God forbid!) they will be doing CT and probably ultra sound to find the blockage as before. I am taking Ursodiol as a bile thinner. Have no idea if it is effective at this point but the bile continues to flow, so…
As far as a surgical option if needed, the two surgeons we’ve talked to are less than eager. They are concerned that the radiation has left much scar tissue which would make already risky surgery much more risky. So like Tom, I’m REALLY wanting to avoid either a partial resection or a transplant. But in the end, my trust must be in the Lord, not doctors.
Im praying that God will give you and the docs guidance through this current maze and that Tom will experience renewed hope and God’s peace.
bobOctober 21, 2010 at 2:38 pm #41119
It seems like you and Tom are facing the same issues at present. I was wondering what scans do they do monthly and what else are they doing for you? Any meds etc? We are going to a new Doc on Weds. and I would like to compare what he suggests and what your Docs are doing. Our present Docs aren’t really suggesting anything right now except to keep putting out the fires as they occur and hope for a liver transplant eventually. That really isn’t something Tom wants to deal with, in fact he says he probably won’t do it. Thanks for any info. I think it’s good to sound informed when dealing with new Drs. MaryOctober 20, 2010 at 10:25 pm #41118
I retired around the time of my ‘issues’ so, no I didn’t work. But I was having trouble just doing some of the puttering I enjoy doing on my boat as by the time I began feeling better after one of the sepsis episodes, I’d get sick again. Plus, my daughter and my youngest son nagged me about not taking on too much – they feared fatigue would lead to another infection – which of course was unrelated. As for now, I’m feeling really good. God is good! I’m gaining stamina each day. PSC? We’re still doing monthly liver scans and watching…
I can’t imagine how frustrating this peristent leak must be to you. I continue to pray for a solution. As far as “how much longer…” can you do this? Without trivializing your situation, as long as you need to. Remember, you are you of the fortunate ones.
bobOctober 19, 2010 at 7:54 pm #41117
I feel so bad for you. Four more weeks would feel like an eternity. Your situation is what really makes me worry every time they go in and poke and scrape Tom. How long before he starts leaking. It’s very scary and a miserable situation for you. I have always done a lot of research on supplements and Tom has been taking them from the beginning. I really believe they have helped him a lot, probably some more than others. I concentrated on things that helped prevent cancer more at the beginning but now I’ve been looking more at things they recommend for liver disease and that’s where the alpha lipoic acid fits in. You just have to decide whether you want to try them or not- since you’re not doing chemo there shouldn’t be any reason to not try them. Just do some research here about what we’ve all used and then decide yourself I guess. I hope things get better for you soon. With winter approaching it probably makes you feel even more down. Cleveland in the winter can be tough! Take care,MaryOctober 19, 2010 at 6:56 pm #41116
How did you find out about Alpha Lipoic acid? I always want to try supplements but don’t know what’s safe and what’s not?
Did you work while you had your stents and bags? I have so much time on my hands but feel I can’t take on much of a commitment.
So I guess the next step for me is another cholangiogram and an attempt to, once more, find the leak. I’m not going in for that for another 4 weeks! Seems like an eternity. I’m trying hard to squelch the little nugget of panic that is taking place in my head. How much longer can I walk around like this?
How are you feeling? Any more news on the diagnosis of PSC?
BetsOctober 19, 2010 at 3:23 pm #41115
I can be a pain- he always says that when they ask him if he has any pain- none except for me! Ha! I don’t take it personally! He knows he’d be up you know what creek without me. We’ve been a team for a long time. Anyway, I know the external drains are awful- he had several early on and it really was the only time he had discomfort. I just hope this time they’ve managed to drain the abscess that’s caused all this grief the past few months. I’ve been researching supplements that can help reverse liver disease. I started him on Alpha Lipoic acid a few months ago but couldn’t really remember why. Yesterday I read how it can really help with liver disease, cirrhosis, hepatitis etc so I am upping his dose of that a little to what was recommended. I don’t know if any of this really works but he seems to get better and surprise the Docs quite often.
As far as the bile drinking party – I don’t think so. I read Valjees post about drinking that and instant nausea set in. I can barely get Tom to drink carrot juice occasionally let alone that. Really gross! Take care, Bob!! MaryOctober 19, 2010 at 6:10 am #41114
First, I want to say how fortunate Tom is to have you as such an aggressive advocate. In the book of Genesis, before He created Eve, God declared “It is not good that man should be alone” – my response is: “Well, duh. You didn’t have to be God to figure that one out”. Men would be in deep ‘yogurt’ without women. Kudos to you!
I’ve only just recently had CA-19 tests and they did seem to elevate due to procedures and infections – but not nearly as high as Toms. However, they were thought by the docs to be insignificant. As far as the ERCPs being an issue, IR procedures have their own set of gremlins. I’d take an ERCP over an IR procedure. I’ll be praying that indeed Tom can be free of the stents in a few weeks. Let us know and we’ll have a party… BYOBB (bring your own bile bag).
Grace and Peace,
bobOctober 18, 2010 at 6:17 pm #41113
I’m just curious- have your CA19 tumor markers increased any degree the past few months during all of these infections and inflammation? My husband’s seem to jump drastically every time he has an infection or a procedure done and they never come back down again. They are up over 3500 now. I’m not really worried about the cancer being back- they see no sign of it at all and the markers just started jumping skyward about the time they started stretching and biopsing his ducts every couple of months. I keep hoping they can just leave him alone for awhile and see if he gets better but that doesn’t seem to be in the cards. He has 2 stents now that will have to be removed in a few weeks. I’m beginning to think he may be better off with an external drain like you had for awhile. If they can’t get rid of these abcesses with stents then they need to do something from the outside so they don’t have to keep doing all of these ERCP’s. It seems like all they do is cause more infection and inflammation- a vicious cycle as you know. I’m glad you found this site- you are an inspiration to all of us.
Take care, MaryOctober 14, 2010 at 9:38 pm #41112
Yes I have had many infections and I also feel sick for 1-2 days after each tube change. My doctor also gives me demarol (sp?) if needed, and sometimes a bag of fluids. I haven’t had the discomfort you describe that happens right around the time you had your tubes changed. But then again, I’ve been going every 4 weeks. I usually have issues with not being able to flush.
I didn’t post results of my MRI yet. Thanks for asking. My doc says the MRI looks o.k. and there were no leaks on the delayed images. I haven’t spoken with him yet. I’m not sure what the next step will be because I’m still draining 30cc/day from a drain that isn’t leaking. I’ll let you know.
p.s. every time I post to you its under the “tubeless in seattle” thread….always makes me laugh! sleepless in seattle was one of my favorite movies.October 14, 2010 at 7:51 pm #41111
I was going in every six to eight weeks. I could usually know when we were getting close because when I flushed the tube I would experience pressure and occasionaly discomfort indicating that it was clogging. Do you experience occasional infections between tube changes? I had plenty – and often when they would change out the tube I would be sick a day or two after from stirring up bacteria.
I was looking for the results of Friday’s procedure. Did you post it and I missed it? Did they find and fix the leak?
Grace and Peace,
bobOctober 14, 2010 at 5:56 pm #41110
Can I ask how often you went in for tube changes? I’ve been going every 4 weeks.
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