(5 replies, posted in General Discussion)

Thanks for the reply, Lainy I moved to Houston to be close with her last year. I did get your email and thank you for sending it to me. It is just such a sad sad state to be in, the catathers gave her so much grief. I tried flushing it but nothing helps. She is in such a delicate situation, I can't help myself and have to wake her up so she can eat a small amount of fruit or two spoons of oatmeal. I don't know if I am doing her harm ,but to just let her sleep without any water or food seems barbaric.

I know what life will be like now, she is my best friend, my confidant, the other half of my heart. It was already shattered three years ago but now it feels numb. I'm so sorry for any one on this board that has to go through this life shattering ordeal. In the end, I know I gave my 200% and I will always miss that smile she gave me when I walked in the house/room to see her. I know I brought joy to her life and always made sure she was always cracking up to my silly jokes and well taken care of in every aspect of her life.

I'm having trouble sleeping, I wake up hearing her voice, saying she's tired of the pain. Please keep in mind she is no longer in pain but had a really rough 3 years because of the two biliary catahers.

She never wanted to be a burden on anyone, and I made sure and assured her that she was not one to me, I'm honored to have had her for a mother. She has always been a kind hearted, soft spoken woman & her life is an example of how I will want to continue my empty & sad life now. Please keep her in your prayers.

Thanks again, I will continue to change her dressings, the leak will definitely not go away on its own. We were always booked in for an exchange once a month. I think it would be a disaster to put her through that ordeal.


(5 replies, posted in General Discussion)

Hi Everyone,

Mom is at home under the care of hospice since early May, we had her stents exchanged last month! it's time for another  round since it has started leaking again. But my question to you is, mom has been sleeping more now, her patch is at 75 and liquid dilaudid every four hours. She's very disorientated when she is up, her questions are mostly about her father? where is he? Call him? My grandfather passed away 18 years ago. 

I'm going to call mdanderson and ask them how she can handle the procedure? she's so weak. But at the same time what happens when someone is in such state, towards the end and has bile leaking? The nurses with hospice have not dealt with patients like this so they are really of not much help, except telling me to keep her comfortable and that it will be time soon. Please provide me with some guidance if someone has any suggestions. I'm changing her dressings three times a day..

Also, a friend was questioning level of ammonia? What can I do in regards to her being not herself? I know the end might be near but I want to know that I did all I could and did not miss anything. Thanks!!


(4 replies, posted in General Discussion)

Also, she did have an incident where she forgot her bags were connected and woke up to go use the restroom; bags were full of bile, gravity came into the picture and it was not pretty. She's been in contact pain after that. 

Her CARBOHYDRATE ANTIGEN 19-9 is around 3,500 everything else seems normal? I don't know why the number keeps increasing.


(4 replies, posted in General Discussion)

Hi Everyone,

I had a question and wanted to you some insight, mom has been having a slight pus discharge around her drains. We had blood work and urine done and there are no signs of infection. Her total bil number is 3.1 so slightly high. My question is she's in pain where her drains are and want to start antibiotics, catather is draining well to the bag.. can someone have an infection even though the white blood count is normal? Urine does show elevated bilirubin.


Thanks for for your input everyone, the three times we have been to the IR dept the radiologist said that the tubes were moved and hence had to be repositioned. They worked fine for two days and then we were back to the IR. She's going to get her port disconnected and told me this morning there was about an inch of blood in the middle catather that went to the bag. I don't know how this can be normal. We were doing well with the catathers for two years and now all this trouble.

It upsets me taking her back there under anesthia to get the tubes changed so frequently. Sometimes the leaking stops and some days it just leaks out to the bag and skin. The amount of money I've spent on gauze and tape is becoming a joke. It know escalates when chemo is going on so I'm going to monitor and eye how she is this weekend and then go from there. The right size is the biggest -14 French and the middle is 12. The radiologist did advise me that the last resort would be a 16french for the right side but it's been known to move very easily hence the patient needs to return quiet frequently to have it replaced.

Another issue is that she needs anesthesia, I have read here some patients tolerate the exchange with just a little discomfort and don't require anesthesia. Sometimes it takes a day or two for them to set up an appt since they need to get anesthesia on board.

Sorry for the long rant.

Hi everyone,

Hope you are all well. It's been a while since I last posted. Good news is that last Saturday I was finally able to get insurance up and running through Cigna. It's been a long long battle and I've promised to shoot myself if I ever have to deal with insurance again smile

The bad news is my mom has been in and out of the hospital 3 times in the past two weeks due to her catheter issues. The right side has been giving her issues now. It was working fine for the past two years.  She has them open to a bag but they seem to still leak through her skin. The radiologist advised me that the small amount of blood in the bag could be due to the tumor being irritated this much but today she has been complaining of seeing a tad bit more than normal. She doesn't have a fever and has brought the chemo pump home.

The past 7 weeks have been really hard for me, seeing her giving up hope and also watching her in pain and let's not forget the hoopla with the insurance.

My question to you all is has anyone ever had blood leak into the bag? Per Dr. Javle "in the absence of chemo this is expected". I hate seeing her in pain and in discomfort. Any advice would be appreciated!!


(15 replies, posted in General Discussion)

http://www.ft.com/cms/s/0/994951f8-5e71 … z2n03nSLpD

wow this is just insane!!


(15 replies, posted in General Discussion)

Thanks for you reply Lainy, I'm very very disspointed by the system that is set up. I've spend almost four hours twice a day calling and speaking to supervisors who have told me that the system crashes or the verification dept is down. I just started my 6th application this morning and was told I've to upload the green cards in 48 hours. WOW simply WOW.

Beyond frustrated, PCIP ends DEc 31st, don't know why we are not getting a one year extension like it has been announced on the news. Thanks for letting me vent. Will also call the GI business dept Monday at MD Anderson and see what they have to say.


(15 replies, posted in General Discussion)

Thanks everyone for your input, still waiting on a call back, apparently they need to contact me and the csr won't transfer me to their dept. Time is ticking...will call them again tomorrow.

Lainy, I moved to Houston in May. Miss PHX but glad to be close to mom.


(15 replies, posted in General Discussion)

Hi Everyone,

I wanted to see if I could get some help and guidance in regards to this new wonderful healthcare plan (sarcasm) My mom currently has PCIP which will no longer be effective next year, I've her enrolled on the healthcare.gov website but to no avail. The CSR just ask to have patience and check back in a few days.

I don't want to be in a predicament where she is not covered. My parents don't work and are Permanent Residents. My brother is currently helping them to pay for her insurance. I'm getting overwhelmed now since I'm her caregiver and now have to deal with finding the right, proper insurance.

Any help and guidance in the right direction would be appreciated.


(167 replies, posted in General Discussion)

My thoughts and prayers are with the family. I will pray to almighty to give you all the courage, support and strength to over come this loss.


(167 replies, posted in General Discussion)

I'm praying for your baby and you. Stay strong!

I am sorry for your loss. ... May you and your family find comfort in memories and strength in each other's love through out this difficult time.


(10 replies, posted in General Discussion)


Praying for you and your family, please stay strong!!


(13 replies, posted in Members' Cafe)

What more can I say, she is indeed my life smile

Thanks everyone for your response,  mom read your comments, she's scared and gets the port implanted tomorrow. She had her preop today, my dad said she was crying during the appt and while they were explaining to her as to what was going to happen my brother who had accompanied her  got light headed and they had to attend to him for a while ...ahh fingers crossed everything goes smoothly for her tomorrow since she's going in for another round of chemo Wednesday morning.

Hello everyone, I just wanted to post a dilemma that I'm having, I've asked my moms oncologist to book an appointment for her to get a port because she has tiny veins and the poor thing gets poked 4-5 times before they find a good vein for chemo. She's been on cisplatin and gemzar since last year, twice a month.

I know the biliary catathers give her grief, getting them exchanged every  6 weeks under anesthesia and then they leak for a few days once she gets chemo, for those of you that have a port, have u had any issues? pain wise?what's the protocol for keeping it clean? and how much does the port affect your day to day routine?

I leave today and need to talk to her about the upcoming appt, she's aware there is one coming up but doesn't know that it's booked, I know she will get stressed about having a third "incision" being made in her fragile body.

Thanks in advance!!!


(8 replies, posted in General Discussion)

My mother has two external biliary catathers, they give her so much grief, need to be changed every 6 weeks under anesthesia. They leak for 5  days right after chemo and she's had them since March'12. Dr Javle doesn't want to replace them with metal stents since they get clogged easily. Life would have been so much better without them, they need to be flushed daily and the dressing is changed daily as well.


(42 replies, posted in General Discussion)

Praying everything goes well!!


(12 replies, posted in In Remembrance)

Very Sorry to hear about your husbands sad demise. May you find strength in this time of grief. My heartfelt condolences to you and your family.

Congrats!!!! Wish her the very best. Thanks for sharing your good news.

Thinking and praying for you Lainy!


(19 replies, posted in Good News / What's Working)

Thanks for sharing your good news, so happy for u and your family.

Happy Holidays!!!!


(11 replies, posted in General Discussion)

Lindsy, sorry for your loss, you and your family are in my thoughts. Your mil was blessed to have a caring daughter in law like you.


(5 replies, posted in General Discussion)

Thanks guys, Lainy were Teddy's tubes capped? I recall reading about your particular incident sometime early this year in one of the threads. I will be calling their office on Monday just to ask, it would be a shame if she wouldn't be able to fly, might just have to book something local then i.e probably a road trip.