betsy

Hi Mary
What the heck! I would be very annoyed with that doctor. I’m sorry you didn’t get more insight into Toms liver issues. And you can’t just say you think the cancer has returned just because of CA 19 levels. Im glad you posted because I was thinking of you and Tom. I do hope his stent removal goes well in November. Did you go to UPMC today? I know we discussed this before but would you ever consider heading north again to try the Cleveland Clinic?

Betsy

Just checking in to see how your Mom is doing? Any updates?

betsy

I have had recurring bacterial infections that were resistant to certain antibiotics. IV antibiotics helped me feel better right away but then I would back slide and the fever and chills would return until the right antibiotic was found. The hospital would do a blood culture or bile culture to see which antibiotics the bacteria had a sensitivity to. Hope this helps.

Betsy

Hi Kris!!!

So great to see your posts again. I’m keeping my fingers crossed that this last procedure continues to work. I know the IV food is tough to get used to. You’ve been through so much Kris and you are so brave.

Any information on when you might go home?

Betsy

Hi Mary,
How did you find out about Alpha Lipoic acid? I always want to try supplements but don’t know what’s safe and what’s not?

Hi Bob,
Did you work while you had your stents and bags? I have so much time on my hands but feel I can’t take on much of a commitment.

So I guess the next step for me is another cholangiogram and an attempt to, once more, find the leak. I’m not going in for that for another 4 weeks! Seems like an eternity. I’m trying hard to squelch the little nugget of panic that is taking place in my head. How much longer can I walk around like this?

How are you feeling? Any more news on the diagnosis of PSC?

Bets

Hi Kimmie,
I can really understand how much you miss your Mom. My Mom died about 3 years ago, right before my diagnosis of cc. There have been so many times I have wished for my Mom to be here to comfort and hold me. She would have spoiled me rotten with attention. There isn’t a day goes by that I don’t think of her or hear her voice in my head. It is amazing how life continues on when you are feeling so devastated. Time does heal and the emptiness you are feeling will be filled again. I love your quote at the bottom of your post. Who said that?

Hugs,
Betsy

Betsy

I have gotten second and third opinions but I had to send all of records and my scans – going all the way back to my resection. I think it would be difficult to give a diagnosis with looking at the scans. Can I ask what hospital the second opinion came from? I learned a lot getting other opinions. I kept going until I found 2 opinions that were the same. I can’t explain why the team didn’t explain the leaking bile duct issue to you sooner. Since my resection my doctor has been watching one bile duct that was scarring over. Each time I had a scan he would mention he was keeping on eye on it but didn’t explain what that meant and I didn’t ask. Its hard to know what questions to ask and even if you do know what to ask often times the doctors cant predict or just dont know. I know you are all too aware of this, but liver surgery is such a big surgery and so risky. It seems like so many people come out having bile duct issues at some point. You can’t punish yourself – you made decisions based on the information you had and who knows if it all wouldn’t have come to this anyway. Gather your strength and courage and keep pushing ahead for answers. I would hate to think your doctors are being dismissive with your mother’s life…..I just feel there is no clear path for the doctors or the patients.

Betsy

Hi Bob,
Can I ask how often you went in for tube changes? I’ve been going every 4 weeks.

Betsy