Re: Liver Infusion Pump?

I don't have a lot of definitive answers yet. They are pretty sure the pump area has an infection. I'm not sure what that means, except for a trip to NY and a surgery. I'm afraid it means bye-bye pump. And that terrifies me.
I'm so emotional right now and don't really know what "we" are going to do, but the pain is definitely real. And I can't see much good about the pain. So not a positive nor hopeful post here today.

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: Liver Infusion Pump?

And yes, I live near Phila. But I'm in Princeton right now and probably going to NY soon.

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: Liver Infusion Pump?

Kris, please try to stay hopeful and let us know when the NY trip is taking place.
Wish I could tell you something more but the pain has to go as it zaps too much good energy. Thinking of you often.

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: Liver Infusion Pump?

I will continue to pray for you Kris!

Cindy

Re: Liver Infusion Pump?

Kris.....I want to believe and will hold on to the thought that even if....it is the pump causing the problem.... then that other options are available to you.
Wherever you will be either  NJ or NJ.....a tidal wave of positive thoughts are heading your way.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

81 (edited by kris00j Thu, 24 Nov 2011 09:18:07)

Re: Liver Infusion Pump?

Happy Thanksgiving everyone from Princeton Hospital. I'm still here. The pain has dissipated greatly, thank God. The Dr.s are still torn about whether the pump is infected or not and whether that means removal of the pump or not. But now they are yelling at me about the pneumonia and not using my breathing thing and getting up an walking more. So today while I wait for our wonderful (ha!) Thanksgiving Dinner I guess I'll try to be a "better" patient.
I called Dr. Kemeny's office to make sure they were being updated on the tests, etc. and her nurse practitioner said they don't believe it's the pump. Of course, she doesn't want it to be the pump either, as it's "her" pump. She designed this one so if it goes bad I'm sure it bothers her a little more than other drs. I won't say personal, since she doesn't get that way, but she has the best professional reputation.
So I wait. I'm hoping to go home tomorrow where they will teach me to do home infusion i.v. antibiotics. Maybe???

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: Liver Infusion Pump?

Hi Kris. At least the pain is leaving, the pump Lady doesn't think that is the problem and you get Turkey anyway! Now see here Missy, this is Mama Lainy talking and you do what the Docs tell you to do or I will have to fly out there! You don't want that! Or, on the other hand we would probably have some fun together. Take care and I hope you can go home tomorrow!

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.

83 (edited by candrews Thu, 24 Nov 2011 14:07:19)

Re: Liver Infusion Pump?

Hi Kris!  Still thinking about you and praying for you!  Kris, I went back and looked at some of your older posts.  Looks like we have the same pump.  I sure am hoping that it is not the pump!
Cindy

Re: Liver Infusion Pump?

Cindy:
There are a couple of different pumps out there. I have the Codman Pump. I THINK it's a little larger than some of the others but it holds more cc's.
Either way they all work basically the same way. Good luck with you and your pump. I'm just hoping this clears up and I get to keep mine....
Kris

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.

85 (edited by Jim Wilde Fri, 25 Nov 2011 15:29:21)

Re: Liver Infusion Pump?

Kris, I hope you get a "Get Out of Jail Free" card soon and ditch the infection.  That breathing thingy is a pain in the butt, but the consequences of reduced pulmonary function aren't too nice.  I got leaned on in May when I was in for a lung surgery and didn't use that thing enough!  Good luck!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Liver Infusion Pump?

Sorry I haven't posted. I was released on Friday from the hospital. I still had concerns because I never got control of my fever completely. I discussed it with the dr. and he said it should be okay. So I went home.
Got home in the afternoon where the "infusion" people came to teach me how to self-administer. Since I have a port it makes it pretty easy.
Still fighting the fever but am basically doing what we did at the hospital: take Tylenol and go to bed... so that's what I'm doing.
Have an appt. tomorrow in NY with my main onc (the pump lady) and I wonder how it's going to go. Should be interesting...
Kris

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: Liver Infusion Pump?

Hi Kris....It is good to hear that you are back at home.  Good luck on Monday.  Kris, I am wondering:  did Princeton run a blood culture? 
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Infusion Pump?

Princeton ran about 4 blood cultures. 2 thru port and 2 thru i.v.

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: Liver Infusion Pump?

Kris...did they identify the bacteria?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Infusion Pump?

I'm pretty sure they did. They said it wasn't normal. Not sure what that means. I probably should have asked more but the doc showed up at 6am and I wasn't thinking very well....

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: Liver Infusion Pump?

Are you still on antibiotics?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Infusion Pump?

Hi Kris!
Glad to hear you are home.  Please keep us posted and be sure and let us know what Dr. Nancy has to say.

Cindy

Re: Liver Infusion Pump?

Just checking to see if there was any update from Kris!

Cindy

Re: Liver Infusion Pump?

Dr. Kemeny said the bacteria was very rare. Of course it was: why on earth would I have anything NORMAL??
I finished i.v. at home last night. The cough is clearing up and I'm feeling a little better. Still short of breath, and the pump area is a little tender but I'm feeling better every day.
So they stopped by today and unaccessed(word?) my port. YAY!! Back to no tubing.
Bad news today: I found out a friend of mine passed away from her prolonged (3rd) fight with cancer. She was a real fighter and I feel a little guilty that I wasn't there for her at least a little in the past few months. We weren't great friends, and I know she had a wonderful support group, but I still wish I had picked up the phone to call her instead of just thinking about it.
I also listened to Kim's radio show today. She's making me think about whether I'm fighting hard enough or not. So no matter what I feel like today, I am going to get my butt out of the house and go to dancing tonight. I might not dance, but I'm going to see my friends. I know I need to steer clear from everyone in case I'm still fighting infection but I'm going to try to be more "normal". (don't say it out loud, but I'm gonna look for a p/t job. Every time i say that, I end up in the hospital, so I'm whispering it!!) Maybe that will make me feel better and more "normal".

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: Liver Infusion Pump?

Oh My Kris, where to begin!  Mama Lainy hates to lecture but....I am a good judge of people, I graduated from people 101, don't you dare question if you are fighting hard enough! I didn't know whether to post this or fly out to you! You are a fighter with a good spirit and a great attitude. Everyone does the best they can and you should NEVER question if you are fighting enough. Look at all you have been through and how dare you insult Kris that way. yikes  How many people could survive half of what you have been through. Whew! Ok that's over. With that said, you go out only if you really feel up to it as your infection is still not over. I think it may be nice to get a part time job but if not that what about volunteering one day a week at a Cancer Center or something like that.
I am very sorry about your friend but sometimes life just gets in the way. Please just be yourself as you have been you are doing a great job at it. Lots of love being sent from me to you! The you, you really are!

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: Liver Infusion Pump?

Thanks for the update Kris and hang in there!
Prayers,

Cindy

Re: Liver Infusion Pump?

Kris, glad you're feeling a little better.  I'm also glad you got to hear Kim's first program.  She's a little girl, but has the heart of a lion.   She's decided to dedicate her life to cancer patients and the radio program gives her an effective way to spread her positive attitude and her way of dealing with a potentially crushing illness.  I've learned a few things from her!

I hope the blood deal gets straightened out pronto.  You've had to deal with too many bumps in the road.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Liver Infusion Pump?

Kris....say it loud. we won't tell.  You will try to do those things others do - dancing, mingling with friends and you may even find a part time job.  Enjoy the roller coaster high.
Hugs to you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Infusion Pump?

Thanks to Kris and others for sharing their experience with HAI pump. Reading these posts gave me much needed hope.

My brother had an HAI pump installed at MSKCC by Dr Fong. There seems to be some leakage, which still persists after attempts to fix them.

His oncologist Dr Kemeney suggests we can try a low dose of chemo through the pump and see what happens. This is what is making my brother very scared.

Prior to that, from MArch 2012 to June, 2012 the systemic chemos have not been very effective in reducing the tumor or lymph nodes. In June, 2012 Dr Fong did embolization using nano-knife. That is when he also installed the HAI pump which is having the leakage.

I would appreciate any pointers, similar experience that would help us decide whether to go with chemo delivered via HAI pump despite the leak using the low dosage. What kind of questions should we ask Dr Kemeney? Can the leak be quantified? Or is the pump a failure now?

Thanks.

-Jyoti

Re: Liver Infusion Pump?

Dear Jypan, while I can't help with your question I do want to welcome you to our remarkable family and say I am sorrry you had to find us. I do know your brother is in a good place for treatment and I also know others will join in here. Just a suggestion for you that you might repost your Introduction under Introductions as this is an older thread and I hate to see your post lost. You have come to the right site that is for sure so please keep us posted.

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.