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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.
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.
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.
wow this is just insane!!
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.
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.
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.
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.
Praying for you and your family, please stay strong!!
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.
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.
Praying everything goes well!!
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.February 3, 2013 at 10:56 pm in reply to: Lauren is finally getting what we have hoped and prayed for. #68822
Congrats!!!! Wish her the very best. Thanks for sharing your good news.