marinmommy
Forum Replies Created
-
Posts
-
Thank you. Please know everyone’s words mean a lot to me. Its hard for people outside this forum to truly understand how horrible this disease can be. The hiccups all night long, the naseua, the plastic stents, the metals stents, the infinte variations of antibiotics, the ER visits, the daily trial and error meals, the chemo sessions, the weekly blood work, etc., etc. etc.
Greynosa – I’m so sorry for your loss. As with my Mom, it must be so hard to lose your spouse after so many years.
Thank you for your kind words and beautiful poem.
PCL1090 – My focus in regards to CC now is how and why this happens to people. Thank you for the advice. I will do that at my check up this year. I would be willing to have an ERCP if they could do some molecular testing from the biopsy. Interestingly, my half sister on my Dad’s side has cholangiatis (sp?). She says that she avoids seafood because it makes her sick. I suggested she discuss with her doctor the fact her father had CC and if the cholangiatis makes her a potential candidate for CC.
As our family is gathered around my Dad while he is passing, I found out that my half sister on my Dad side has ulcerative cholongitis. She says that her doctor told her to watch her diet. The one food group that she says gives her stomach problems is fish or seafood. I googled a cause for sensitivity to seafood and I read that is what happens when your liver is damaged and cannot filter properly. I told her she should talk to her doctor about Cc in the family. She is in her mid 50’s.
I keep wondering how my Dads cc started. My theories are:
– He was mechanic at refineries for many years. Probably handled valves with chemicals. He had a terrible accident when one of valves wasn’t properly closed and he had severe burns all over his body – sulfuric acid. Was in the hospital for many months. Recovered very well. However, his doctor told him he would most likely develop some cancer in 15 years. Sure enough, 14 years later (1996) he was diagnosed with non-hodgkins lymphoma. Cured in 1997.
-Grew up in Honduras during the 30’s and 40’s. parasites were common in kids back then. Liver flukes?
– He had his gallblatter removed in 2010. Five of his relatives, including mother and daughter (the one with UC) have had gallblatter a removed.I am now interested in participating in any clinical trial which is testing relatives bile ducts by means of a ERCP.
Thank you Lainy. I can’t tell if it is the chest rattle but the breathing is deep with about a 4 second delay until the next breathe. He barely responds to our questions and barely mumbles responses. I’ve noticed him pick his sheets, and wave his arms in the air. Today I spoke to him in his ear reminding him how much I love him. How he has been one of the most wonderful gifts from God to me and that we will see each other again. He actually put one arm around my neck Lainy!
If you could only see us here in his room. Some of us are sleeping on the floor around his bed. Others in the living room.
Thank you all for your kind and loving words. Especially thankful for how peaceful, in general, his last days have been. I am grateful to be able to be at his side and care for him during this time.
Marions – we pushed for the g-tube and he hasn’t suffered from vomiting. My mother and us kids really appreciate your advice. Keep in mind no one wanted to place it for fear of infection however the interventional radiologists finally agreed to it.
Lainy – He is 75. Prior to all of this he was super healthy and strong. He has been so brave through all of this.
Thank you Gavin.
They wanted to take all the junk sitting in his stomach out because it isn’t going through the intestine.
Finally yesterday afternoon they were able to get the tube down his nose and throat. They ended up using a numbing spray in his throat and a gel in his nose. Once the tube was in he quickly filled up a container full of undigested gunk. He is feeling 100% better but without any nutrition going in, he was given blood today.
They didn’t try enemas since his blood count was too low to risk a cut (sorry, TMI).
Didn’t know about promethegan! I will keep in mind next time.
Thank you everyone! I’m back in California and praying I see my Dad soon.
Barbara
We have notified the airline that we will need a wheelchair. No oxygen needed at this time.
I also think it would be very helpful if the bowels are cleaned even if there isn’t a blockage. I’ve been a little aggravated that issue isn’t being focused on. They have attempted to insert the tube 3 times without success. They Are going to try again this afternoon using a numbing spray in the throat. Last night I convinced the nurse to ask the doctor to order an injection for the nausea vs. the pills since he was vomiting which they did. I also questioned giving him laxatives orally since he was throwing up continously but was told there was no other option.
Blood cultures were taken of the port, urine and blood. Waiting on the results.
Last time he was hospitalized last month, the GI doctor did an ERCP, changed his plastic stent to a metal stent and took a biopsy of the tumor located in and around the liver and bile duct. He said he believed the infection was in the necrotic portion of the tumor not the bile duct itself. The biopsy did not reveal anything conclusive.Thank you!
BarbaraThank you Lainy. We were going to have him and my Mom fly (first class) this Thursday. Still hoping we can. He had chemo on Monday and was fine all week until Friday evening. Good idea on calling Stanford. I’ve been asking the nurses and doctors about the fact that he hasn’t had a bowel movement all week but it seems they don’t think that is an issue since they don’t see an obstruction. Even though last time this happened the vomiting and hiccups went away once be had a bowel movement.
I’ve been here with my parents since Sept but am flying back to San Fran with my little girls tomorrow so needless to say I’m very nervous and worried about leaving them. There are other family members here but my sister and I are the main managers of his care.
Barbara
