51 (edited by lovedad09 Sun, 09 Dec 2012 11:15:16)

Re: need help for my dad

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...

Re: need help for my dad

You are right, there is too much going on. I too hope Dr. Schreibman gets in touch with you. Like I said before, Teddy ate right after. I don't understand so perhaps someone more qualified than I am might. I have one more idea. Can you ask for the radiologist who inserted the drain and talk to him?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

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.

Re: need help for my dad

Good luck, this is the best news you have had so far. Let there be food and GO HOME!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

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.

Re: need help for my dad

This is a first for me. I have never heard of orange mucus! Have they given him anything to eat yet? Try to get some sleep tonight.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

Still no food is allowed. Will ask about it tomorrow. I seem to have a cold too. sad
Going to sleep. Hopefully tomorrow can bring good news. Whatever it is as long as its good news.
Thanks!!

58 (edited by lovedad09 Mon, 10 Dec 2012 12:01:01)

Re: need help for my dad

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.

Re: need help for my dad

Lovedad: I understand the frustration. I see Dr. Fong at mskcc. I love him even though he keeps giving me bad news. The only thing I can say is if your surgeon is highly rated, then good. BUT Sloan Kettering is not far from you and it might be worth a trip. I doubt you would have the same mskcc onc that I have because dr. Kemeny works with her pump, but there are so many research docs there I feel it's the best place for me.
I remember how frustrating the first few months were. From Feb 2011 until April 2011 all we did was tests. Then I switched to Sloan Kettering. April was my surgery to insert pump and then nothing but problems until late June. Then we mostly got a plan in place, although it changes monthly.
Many of us have experienced your frustration and I pray you get some kind of plan in place. But don't be afraid to look elsewhere.
There is also dr. Kato at ny Presbyterian who is supposed to be wonderful with "inoperables". Good luck.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: need help for my dad

Hi LoveDad, I am so very happy that Dr. Schreibman got right on it and he sounds good! He is not a downer and it seems he has renewed Hope for Dad. Wonderful that he will help you get to one of the other Hospitals. Both are good. Now if they can just get that right side working, you will be in business! All in all it is a good news day. Will wait to hear what the radiologist says.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

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.

Re: need help for my dad

Can you ask for another radiologist to take a look at the situation?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

The pump delivers chemo directly to the tumor as long as there is only 1. But it was a big surgery. It is stitched into my abdominal wall. I think Dr. Kemeny is brilliant but as a person I do not like her. But there are many oncs there that specialize in hepatobiliary and gastro cancers. Dr. Fong should be able to tell you who he recommends for your father.
My trips to Sloan depend in what I'm doing. But it is a big commute. I take the train from Trenton. Hopefully you can see both docs in one day. I have only done that a couple of times but since I am inoperable I only meet with Dr. Fong every 6 months or so. And I do have another onc that I see when in treatment. He is closer and takes his orders from Dr. Kemeny. So that is an option too if your father is able to get treatment.
It sounds like Dr. S. wants to do the best for your dad. That's important too. But you do need the best care also. I hope his bilirubin drops so you can have some options.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: need help for my dad

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.

65 (edited by lovedad09 Tue, 11 Dec 2012 08:26:39)

Re: need help for my dad

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.

66 (edited by lovedad09 Tue, 11 Dec 2012 10:03:31)

Re: need help for my dad

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.

Re: need help for my dad

Hi lovedad,

I am sorry for your pain in trying to deal with all this. I think you are doing what you need to do for your Dad already, which is be there for him. I have not been through this, but I can tell you what I would do. I would dig deep down inside and find every ounce of strength I had. You need to get hold of your emotions. I would also ask the doctor what they are doing to try and help your Dad and make sure I said to do everything possible to try and help him. Is he on antibiotics if the doctor thinks he has an infection? I'm sorry I can't help more, but I am sending prayers and good wishes your way.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: need help for my dad

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.

Re: need help for my dad

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........

Re: need help for my dad

Hi. Don't have many answers.  I'm dealing with my brothers treatments as we speak. I lost my Mom to this 5 yrs ago and now my brother has stage 4. I know your pain and all the confusion. Praying for you during this difficult time.

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.

Re: need help for my dad

LovemyDAD and Annie. Just remembered something we used to say a lot on here and that is "we always try to stay realistically optimistic".You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

Thanks... I can only wait and see how it goes...

Re: need help for my dad

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.

Re: need help for my dad

Dear lovemydad, I am so very sorry for your family. Good to know Dad is aware of everything but what he said to you about being strong shows that he has accepted what ever is to be and wants you too as well. That is why he told you to be brave! Not an easy thing for a Dad to do. You see, even in this situation his thought is about you. I am thinking about you and wishing I could take this all away from you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: need help for my dad

I'm so sorry to hear this news. I was hoping you would be able to transfer to Sloan or NY Pres for better treatments.
You and your family are in my prayers for strength and healing.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.