lovedad09
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It’s been a very tough month for my family. My dad has passed away last Sat in the hospital. He stated in the hospital for 3 weeks, went to nursing home for 2 weeks. Just 1 month after he went to the hospital for the drain…. It happened so fast. I scheduled a radiation re-evaluation appointment for him but it’s too late. Maybe it’s not that bad… radiation is not comfortable anyway.
I hope he’s in a good place, happy and rest. I appreciate everyone’s support! I’ll check back this forum and show my support to others too. take care!
My dad’s figures pretty much stable. Getting little better and better, but not quickly a lot better. I am afraid they’ll stop treating him even the infection …. I found out Dr. Diehl’s mom also very sick and he left town. No wonder there was a bit of delay during the time we were in the hospital. Anway…
Doc said because the liver function not good, we can’t treat the cancer; because of the cancer making him weak, liver function is not good. This is catch 22. We asked doc to help ask again why can’t we drain the right side. If right side is also drain, it must be able to help bring the numbers better. But innervation radiologist doesn’t agree to do it. Reason is not very clear, but some doc said not safe to do it. May kill him right away if not aim/drain the right spot? Doc will help ask innervation radiologist again…
I have talked to my dad all I need to tell him. He told me to be brave. ……Praying.
Kristin, sorry to hear your story. It made me cried. My dad also has cc, just found out a month ago. He’s old and weak while obstruction been going on for a month, he seems weaker. He had one side drained last Friday, seem much better, but today doctor said even it’s improving, but he doesn’t think it’s improving fast enough it’s an indication of liver function is not going to be good enough for treatment. I don’t know what to say and I don’t quite believe it.
One thing I’ve learned is, if your dad decided to have some treatments, go for consultation asap. May or may not start soon, but if he wants to do something, start early when he’s stronger. Starts later he maybe weaker, would have less options.
You are in my prayers…. take care.
I asked the nurse, she said liver function came down a little today. was 80 in the past few days, today 60. bilirubin was 18 for 2 days, and 13, and now 10. She said they have not found heart detect. I see numbers improving, but not sure why doctor said it’s not working. Doc said if left drain is working, the bilirubin should come down in 1-2 days. My dad’s bilirubin staple for the 1st 2 days and come down a lot.
My guess maybe infection after they put in the drain in his left side that makes the numbers/heart rate/blood pressure swing. But bottom line is he’s improving. He was not allowed to eat until yesterday and not allow to eat again. Any human being will be weak without eating. I need to be sure ask the nurse to have Dr. Fong look at my dad’s whole case, not just dial a phone to call.
I am really hoping some doctor in this world can help him. Praying……..
Thanks Pamela. Yes he’s on antibiotic and on call doc said he’s on the right one. They are doing blood culture to find out more.
I feel hard to believe he’s so weak cannot take any treatment. I am not ready to lose hope yet, but doctor told me I should.
I got a called from Dr. Diehl and he said my dad is very weak and ill. liver function is not good, otherwise; his bilirubin would have dropped in a day or so. It’s dropping, but not dropping fast enough, means liver function damaged too much. He said my dad may have a heart detect last night. Liver function not good, my dad is weak because of the cancer. We can’t treat him because liver function is weak. On top of everything, maybe a heart detect, if not heart detect, it’s even worse means infection somewhere we don’t know. ????? Conclusion is… he doesn’t think my dad is qualify for any treatment, such as chemo or radiation. He said any chemo or radiation will kill him. He said my dad could have only days or weeks left. This sounds too crazy!!! I asked 2nd opinion with Dr. Fong. He said he’s happy to speak with Dr. Fong if he calls. I told Dr. Fong’s nurse…
I can’t believe what’s going on here…………..it’s hard for me to believe what I have heard. I don’t know how much I can trust what I heard….My dad didn’t have so many problems before he came in the hospital. Now we have so much going on. My mind is blank. I need to bring my mom in ICU tonight and my husband need to come visit. I am so upset…. I can’t believe… still can’t believe what he told me.
What should I do next??? What can I do now to help my dad? I don’t want to lose him. I love him so much.
Thanks Kris! The Sloan nurse told me if Dr. Fong sees my dad, he can also walk us to ONC. One day can see 2 doctors usually. Sounds great if we can work with someone locally, not NYC every treatment, that’ll be great.
Dr. Schreibman seems good so far. He seems very much willing to work with NYC doctors. I like it.
Right now, my dad is back to ICU, I don’t know what’s the next step is. Trying to find out more. Hospital experience sucks. Horrible place.
My dad was perfectly fine yesterday before I left to pick up my son. Doctor allows him to eat or drink.After I left, they changed his room. He said he’s really cold, the nurses didn’t know how to use the warm blanket…. and he chill again. The doc said breathing number not as good, sent him back to ICU again. I am so mad. Nobody calls me or explain to him what’s going on. No translator phone was used. I am still trying to find out why they moved his room last night before ICU. This place sucks!!
One good thing is my dad’s bilirubin is dropping. 18 over the weekend, 13 yesterday, 10 today. hopefully, it can drop more so that we can leave this place and seek for more treatments.
Thank you Kris! What does pump do?
How long will you spend each visit in Sloan? Can surgon app + onc app in one day? I am closer to Sloan then you are. I’ll take dad to Sloan, but he can’t get out of here yet. Hopefully, we fix it soon. It’s a hard commute to NYC no matter where people are, but I’ll do my best.
The residence stopped by again said radiologist thinks right side smaller bile branches maybe blocked so much that the bile doesn’t go to the main right duct. Radiologist doesn’t think it’s worthy to put drain or multiple drain there. Seems like radiologist gave up on draining the right side.
I asked them please talk again. We have to have a plan to do something. bilirubin 18 is still high… this seems simple but why it’s so difficult.
So strange… I clicked submit, but seems I lost my post. Anyway…
Today Dr. Schreibman came very quickly in the morning. He seems good, most importantly, he tells us what we should do first, control the bilirubin down to below 3, we will have much more treatment options. right now, bilirubin is still high can’t do much. Thanks God !!! Finally, there is a doc can tell me what we should do because … not I ask doc should we do this or do that? He talked to the surgeon team. They’ll find out more from radiologist since right side still not sure how’s going and bilirubin doesn’t drop/staple. To me it’s a sign that left maybe ok, but right still blocked so bilirubin stable. I asked a few times, residence came, and more waiting… Dr. Schreibman recommand Sloan and Columbia Presbyterian too. Said can help us make appointments if we need. Sounds great. He seems good so far. Hope he’ll be more in charge of my dad’s case.
The orange mucus culture hasn’t come back. STill testing. But Dr Schreibman said it should NOT be tumor spread, doesn’t go to lung usually… Thanks God!!! 1 less thing to worry about.
Hopefully, radiologist can get back to us sooner so that we can drain the right side and move on to next treatment. We got stuck in the hospital here can’t do anything. Dad is not happy with the nurses either. They don’t help much, but if family members are here, they pretended to be nicer. Some really bad, some good. We want to get out of here asap.
Still no food is allowed. Will ask about it tomorrow. I seem to have a cold too.
Going to sleep. Hopefully tomorrow can bring good news. Whatever it is as long as its good news.
Thanks!!Dad left ICU. We were happy for a little while and then he cough with orange mucus once. pneumonia or what??? very angry. Tomorrow, I’ll talk to all doctors/nurse about this. They are testing the culture for mucus. I hope dad is fine. Hopefully, it’s not a big problem.
This whole experience sucks!!! I can’t believe I am so unlucky one thing after another.
The on call doc will look at the X-ray or films and give me some idea. Monday will talk to the radiologist and the surgon doc about the right side. Its hard to get in touch with doctors.
On call doc thinks he can eat need to confirm. They think he can leave icu today. Hopefully he will do much better soon. We want to leave the hospital ASAP too.I don’t see how possible we can change hospital. It’s a big move while he’s with external drain on left side still under treatment for antibiotic/infection somewhere. I don’t think he wants to move either. It seems dangerous to make a move right now. But next time, I’ll ask Dr.Shreibman if we can go to St. Clare hospital, where he also goes to. That one seems to have nicer nurses. I had my 2 babies there, and they were very kind.
How long can people eat or drink after external drain? I am so concerned. Nurse said his system needs to rest, so cannot eat/drink. Otherwise, will hurt him more. We really need an ONC to take control of the situation… Hope Dr.Shreibman can help us. Praying…
