I’m new, mom about to have op
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Hi Dina,
Glad that the webinar was of use to you and that it has helped give you a bit more confidence in Dr Choti as well. My fingers are crossed for your mum and tons of positive thoughts are coming your way as well. I hope that it all goes well and please let us know how your mum gets on. We are all here for you.
Best wishes to you and your mum,
Gavin
Hi Dina. I was not given a choice and for some reason it crossed my mind the night before surgery. I asked and I received. They said no problem at all. Its takes a minute and is virtually painless. They gave it to me just before they put me under for the surgery. I would ask for it just in case. BEST OF LUCK!
Thanks everyone for these wonderful replies. Gavin, I watched the webinar with dr Choti which was really instructive and interesting, and definitely gave me buckets of confidence in him.
I am curious about the mention of an epidural. Is that something they give pre-op, in addition to a general anasthaetic? Is it common practice or do we need to ask for it?
we are off to the hospital at 4:30 am tomorrow, so will let you all know how it goes during the day…
Dina
Hi Dina,
Dr. Michael Choti is awesome, and he is on Cameron Blue Service, My mother had her Whipple at Hopkins as well, she survived 19 months after surgery.
I live in Baltimore and if you need a home cooked meal please call, 443-394-6163, I would love to meet you.
Anything you need just call.
Sending hugs your way,
RoniDina I am back on My doctor was dr. schulick at hopkins who was great. unfortunately he is leaving hopkins so I am now searching for a doctor. I heard that Dr. Chodo was one of rthe best surgeons at H0opkin. I AM DOING WEE
JUDYHi Dina- ihavs tried to send you 2 emails but they were never delivered so I will make this short. I had surgery for cc Dec 9 2009. the surgery went well. However I did have some memory problems and lost about a week. I recovered and then wemt to hav Gwnxyme for 6
weeks I am doing great-A lo of friends formed a telephone tree and brought us food. I’ll be thinking og you
judyHi,
I am just a patient .like your mother. ,I am almost 63. I had the good fortune of have 2 resections in two years. I mean it- it is God’s grace that allow me to have the chance of surgery if you are familiar with this disease. so, I think i can qualify to give you some advice.1. the surgery is long 4-8 hours in general.
2. both times I spent 5 days in the hospital.
3. No pain,not even an aspirin;Just post-op antibiotics to prevent infection.
4. Start to be up and walk around in the hallway the next day.and keep doing it so the nursing staff notice your progress.
5. I talk to the nurse and doctors when they make their rounds the 2nd day.
6. I sit up and eat a “regular diet” right away the next night;but most patients will start a” liquid diet” the first couple days.(it depends on your mom’s surgery,if it is a Whipple procedure and not just a resection,it may take longer.)
7. I do feel tire most of time,I just close my eyes to rest and plan for my next step if I did not go to sleep.;never watch anything on TV.
8. One of the most important thing is using the “breathing machine”, to try to help you breathing better after surgery. the more practices the better and the earlier you can get out of the hospital and avoid pneumonia .
8. Make sure they give you DVT prophylaxis like Lovenox subcutanuously injection daily and the use of the machine that help your leg’s blood circulation to prevent blood clot.
9.. I do not think she need a nurse to look after your mother if there is no complication during and after surgery(ie: pneumonia or develop DVT.)
and she can be on her feet to walk out the hospital instead of using the oversize wheeler chair.(but each person is different, you have to make your decision base on your mother’s overall heath condition after discharge from John Hopkins— the #1 hospital in the past 25 years in the States for providing the best quality of health care by an institution in general.)
good luck and
God bless.Hi Dina,
I had surgery last November. They took out common bile duct, gallbladder and 60% of my liver. They gave me epidural which helped me a lot in terms of pain control after surgery. I was in hospital for 2 weeks due to slight complications( blood clot on my calf, fever, and pneumonia). Other than that my recovery was uneventful. However, it took me about a month to get my strength and energy back. Also eatting wasn’t fun. I slept a lot and on pain med(norco) for about 2 weeks. They also gave me a large elastic binder to wrap around my waist and slept on my recliner for about a month since I couldn’t lay flat on my bed. I hope that helped your questions.
I wish your Mom best of luck with surgery and speedy recovery.
LeeAnnHello Dina and welcome to our extraordinary family but sorry you had to find us.
Your Mom is having surgery at one of the best hospitals for CC. One week in the hospital is about right. As for her pain level everyone is different. She will probably have a pain pump with Morphine and will sleep alot the first 2 days. They had my husband sitting up the next morning and the 2nd night they had him take some small steps. 2 hints I can give you and that is to have a pillow for Mom to hold against her chest when coughing and the other is to ask for an epideral as it will numb her mid section for 24 – 28 hours. Oh, one more thing, ask for a spray bottle of Chloraseptic as it will give relief to the tube that she will have down her throat. I don’t think she will need a nurse at home unless she is alone in which case I would get someone to be with her, does not have to be a nurse. Complete recovery can take up to 3 months sometimes longer as this is a huge surgery and can take 8 hours or more. It is not life threatening just huge. I am wishing the best of luck to your Mom and please keep us posted, we truly care.Dina
i’m sorry your Mom has been diagnosed with CC but I’m pleased you found us. You will get great support here as you help you Mom in her battle with This disease. The fact that she is a candidate for surgery is good news as surgery is the only curative treatment – good luck on Wednesday. I’m not from the US but I believe John Hopkins specializes in CC – others will come along soon to re- assure you.Pain management will be looked after by the medical team and I would not worry to much about putting too many movies on the iPad – just be there for your Mum.
Take care and come back often
Gerry
Hi Dina,
Welcoem to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I’m glad that you have joined us all here as you have come to the best place for support and help, and I know that you will get a ton of both from all of us here.
I have no personal experience to share with you regarding surgery as my dad was not a candidate for surgery of any type. But we do have many members who have the surgery that your mum will have next week and I know that they will be along soon to share their experiences with you.
I am very glad to hear that tyour mum is a candidate for this surgery and she is in very good hands indeed being treated and operated on By Dr Choti at Johns Hopkins. Indeed, Dr Choti did a webinar for us back in 2010 and it can be found here should you wish to watch it –
Also, I did a quick search on the site for posts by the members that talk of Dt Choti and found these posts for you –
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1517368702
And please, no apologies are needed by you for the length of any posts! We also have a resections board here that should be of use to you as well –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=41
I know that you will have more querstions over time so just as away and we’ll do what we can to help in answering them. I hope that all goes well for your mum this week, my fingers will be crossed and please keep coming back here and let us know how she gets on.
My best wishes to you and your mum,
Gavin
Hello, Dina!! I’m sorry I can’t answer your questions, as my sister was not a candidate for surgery, but I want to welcome you to our wonderful family, though I’m very sad you had cause to find us.
This is a wonderful site and you’ll find a wealth of help and support here, from all over the world. I’m “just down the road” from you, in North London.
I’m sure others will be along very soon, to give you much more information than I can but, in the meantime, you can try the search option to find more info within the discussion boards.
My best to you and your mum and I wish her every success with her surgery on Wednesday.
Julia
Hello
I’ve been reading through some of these great messages the last few weeks to try to get some idea of CC and what to expect.My mother (68) has just been diagnosed with it, and they tell us the tumour is just a the bile duct bifurcation, mostly in the right bile duct. they have done 2 ercps, multiple ct scans and a few MRI scans for good measure. Still they can only say with very guarded confidence that they don’t think it has spread.
She is being treated by the team at Johns Hopkins medical centre, specifically under the care of Dr. Michael Choti.
She is due to have an operation on Wednesday to resect her bile duct, gall bladder and two thirds of her liver.
First and foremost I was hoping to get an idea from others on this group what I can expect in terms of post surgery. I have been told she will be in hospital approx a week. Is this right? Will she be in great pain, will she be out of it most of the time? Will she be able to sit up in bed after a few days? What advice can you give me about things to have ready for her to make things more comfortable (for example I am getting a bunch of movies loaded onto an iPad for her to watch, is that realistic?). And longer term, how long, assuming all goes well and they are able to do the surgery, until she is on her feet? Is she likely to need a nurse to look after her at home?
Also, has anybody here had any experience of the johns Hopkins team? I think they are supposed to be very good and I got a very positive impression from them. We did go for a second opinion at penn medical centre in philadelphia, but they seemed much more pessimistic in general, about success rates of the surgery, and also about my mothers case in particular. Even though they were looking at the same test and scan results as the other doctors, they seemed to see something different.
Apologies for such a long winded post. And I also apologise if I am asking for info that already appears in another part of the website or message boards. Happy to be directed elsewhere!
Thanks
Dina
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