Need some input/advice for Caryn
 

I have to admit that I feel badly leaning on you guys so much when you each have so much on your own plates. That being said, I need to reach out again as I'm not sure I and the Dr are doing all that we can.
Caryn's bilirubin continues to rise even though they removed the fat from her TPN last Thursday (the doc's thought was that her liver wasn't absorbing the fat). He also felt that avoiding chemo for a bit might reduce some potential inflammation which might help her bilirubin as well. Well, unfortunately, her bilirubin went from 10.3 last week to 13 on Monday. Then today she had to go in for an emergency procedure to remove her port since she woke up with a painful port infection. The bloodwork from the hospital now has her bili at 14.3!! I know it's a different lab but I'm VERY concerned and am not comfortable sitting idly by while her liver is failing.
Justwannabe informed me that one of the risks of the Sir-spheres is inflammation of the liver so I forwarded that to her Onc but I feel like I need to push him to get the gastro specialist more involved. Any thoughts?

Eric,
I am sorry to hear about the latest issues and the port infection. While I do not know about bilirubin levels or liver inflammation, I just wanted to jump in to say that I am here for you both. I have been praying for Caryn and you too. I will continue to pray for improvements in Caryn's situation and that her doctors can find some new ways to help her improve. Take care and God bless you both tonight. (((Hug)))

One thing after another for you kids! I feel mightily for you. And will pray hard for a turnaround.

Was wondering if the infection or the treatment for that could in some way cause the the rise in bili??

If I get any brainstorms, I will post.

Eric
I too am wondering if all the inflammation and infection caused her billiy to rise...I would ask the gastro to intervene...one more head on what to do has got to bring options.
Holding you both deep in my heart and in my prayers. This battle is so unfair!

I have no words of wisdom , only prayers to offer. I hope you find an answer to your questions and that Caryn feels better.

I believe having more input is good. You need to know you're "on-top" of things and having one more voice might add some new insight.
I know that when I got e-coli, my liver #s went nuts! Really worried me at the time. As I looked back over my charts #s later, I realize it was probably all infection, but at the time I was nuts.
Love and prayers to you both, ma

Eric, my prayers for Caryn and your children.

shobha

Hi Eric. Your post reminded me of when Nikki was facing liver failure. There seem to be some similarities, but keep in mind that it's probably only coincidence. Her bilirubin was creeping up and then it would drop down and then spike, etc. At the same time, she had a problem with her port sort of working it's way out of her chest. It seemed to be infected and inflamed. When her bilirubin spiked at chemo. one day, on the way home, her NP called and said she had a blockage and we should rush her to the ER for surgery. Sorry for the quick version, here, but I could write a book on that day. We found out that she was in a diabetic state, they gave her insulin over her stay in the hospital, and her port site healed right up! Bili. was a different issue, but I noticed over the next 4-6 weeks that whenever her glucose went up, and she was given insulin, the next week her bilirubin count went down. I saw that pattern 3 or 4 weeks in a row, but was told it was just a coincidence. I'm not saying there's anything to it, but maybe check her glucose. Can anyone out there shed a little light on this? Eric, I hope this may help.

Need some input/advice for Caryn
 

I keep thinking something more can be done to help the liver. Can you contact the gastro specialist directly?
Whenver my oncologist couldn't figure something out I had no problem going to someone else with or without permission. It is my body, not his !!!!!!!!!
Very often I went to my licensed naturopathic physician who always had a solution or suggestion about who else to go see.
Almost eveything that goes into our bodies goes through the liver, so the liver is like a big filter. Something is affecting the liver and that has to be figured out by someone who knows something about the liver.
Good luck. Please know that you and Caryn can always share your experiences with us. Please feel free to do that anytime. You are in our thoughts and prayers.

Just sending prayers...I wish I had more medical info to offer.
Flori

Eric,

I don't know a lot about the liver procedures but liver enzymes can rise due to medications and infections even when cancer is not an issue.

I'm praying that the infected port has caused Caryn's enzymes to climb and that when the infection is controlled they'll go back to normal.

We're here for you and Caryn.

Joan

I am sorry to hear about the rough time caryn is having.
Liver enzymes can jump with infection, and then there this the variable of a 2 labs.Increased serum glucose decreases wound healing . There is alot going on. Perhaps getting a clear idea, at what juncture will the Gastro intervene will help. Get thoughts from both docs.
You are doing alot, Eric.
I am keeping caryn and all your family in my prayers.

sending love and prayers! and lots of hugs!

I apologize that I haven't responded as I've read your posts and greatly appreciate your thoughts, prayers and recommendations (as always). Caryn came home from the hospital today although the last blood culture still showed the infection is active. Hopefully the culture they took today will come back clear so she won't have to go back in. On a positive note, her bilirubin finally came down (from 14 to 8). We're thrilled and hope that it continues to drop. She's starting to feel a bit better and even tried to eat again. No luck as it feels like the food gets stuck again so we're meeting with the doc tomorrow to discuss that along with the other items.
Thank you all again. You're the best!
Eric

Such wonderful news, Eric! I am so very happy for your family! You shall remain in my prayers.

Great news Eric, I hope Caryn continues to improve.

all the best
caya

I'm celebrating the positive news that you have shared with us. I'll continue to pray for you both. Take care.

I just hope that things stay positive!!!!!!