betsy

So glad to hear the good news about your Mom. Hope she is home soon and feeling better.

Betsy

Hi Kim

I’ve had many brushings done during tube changes but I’m not familiar with the FISH test and the DIA test. Could you please explain a little more?

Thanks.

Betsy

Dear Kevin,
I’m so very sorry to hear of Kristin’s passing. Thank you so much for letting us all know. I can’t imagine how difficult this is for you. I’m so sad for you and I hope you have family and friends to lean on. I really admired Kristin’s courage, sense of humor and intelligence. I will miss her.

Betsy

My quality of life with the drains is tolerable. To be sure, its not much fun, but I’ve gotten used to it. I used to be really fussy about hiding them from sight but I don’t worry about that so much anymore. The worst thing is the fatigue – I don’t have the same energy I used to and tire out easily. By the way, I’m 49. I can absolutely understand what your Mom is feeling. Its so hard and it just sucks. You think to yourself, I’ve been through so much, am cancer-free, and now I have these bile duct issues. I would suggest you let your Mom feel whatever she is feeling. It really helps to read the posts on this website. There are so many amazing people dealing with tremendous problems and it helps to hear how they are managing and coping. The threat of the cancer returning is very real and I think about it a lot. One thing that really works for me is distraction – I love to watch movies on Netflix, read books, listen to my Ipod, bake, cook, hang out with my dog. It gives me a break from my mind.

As fas as infection at the drain site, I am on oral antibiotics and have been since January 2010. I wash the site with soap and water and use hydrogen perioxide if the site is really red and sore. While I was in the hospital, I always watched to see the nurses used gloves if they were going to handle the drain site. Can’t suggest anything else to do in the hospital. I actually think there is more risk of getting infections in the hospital than at home.

Don’t know how my doc plans to glue the duct. As soon as I find out, I’ll let you know.

Betsy

I have been dealing with a leaking bile duct off and on since my liver resection surgery in Jan. 2009. I know stents are the treatment of choice however it hasn’t been working for me. I’ve had stents and external drainage bags since Jan. 2010. At this point, if my doctors can pinpoint the leak, they are going to try and glue it shut. If that doesn’t work, they are going to try and cut off the piece of liver where the leak is. I am being treated at the Cleveland Clinic, main campus, by Dr. Mark Sands. I’m assuming your Mom is dealing with infection since she has been hospitalized for 6 weeks. Is she being treated by an interventional radiologist? Infections can slow the healing process. I don’t know what else to offer up since its a complicated issue with lots of details, but I have been through a lot of procedures with this and I would be happy to answer questions for you if I can.

Betsy

Hi Bob,
My IR doc has scheduled an MRCP for me this Friday. Its going to be a 3 hour test – never had this done before but from what I’ve read, its just like getting an MRI. After this test, he is hoping to be able to see where and what is causing my bile duct leak. The next step is to use “glue” to seal the leak. This will be done under general anesthesia. Any experience with these procedures?

Hope you are doing well without your tubes.

Betsy

Dear Kevin,
How sad I am to hear your news. I emailed with Kristin this summer about our shared issues with drains and enjoyed getting to know her. I haven’t written her in a while but I think of her every day and always read her posts. I do so hope her condition will improve and that the ER doc is wrong. Please know I am thinking of you and Kristin and sending all my love and prayers.

Betsy