“tubeless…” update

Hi All,
Bob, I hope you are still doing well. Betsy and Marion it’s good to hear from you both too. My computer is still broken and we have been very busy with our business but things are winding down now thank heavens. I begged Tom to stay well through May and he did. He didn’t get sick again until Tues and ended up in the hospital again. I just brought him home today. Now his duodenum is so swollen they can’t pass the tube to change his stent. They feel the current stent is still functioning and put him on antibiotics and we’re basically waiting until he gets sick again. Then they may have to go in from the outside and change them through a tube or give him an external drain. Bob, I just wish he could have surgery too to make all of these infections go away. Betsy, if you can live with three bags I guess he can deal with one. He’s done it before but it’s not something he wants to think about! I wish they could solve your problems. You have been dealing with this for soo- long! I’m glad you’re able to go on with your life. That’s what we all have to do! It’s amazing what you can deal with if you have to! Take care all. My computer time is limited and I have to check on ways to help a swollen duodenum?!! Yea, another challenge! Best wishes, Mary

Hey, Bob & Donna, have a safe trip to your ‘other’ home. I hope to see you on your return to Maricopa! We can do dinner. Heck, I can make dinner. I wish for your continued success and pray you will feel totally normal again, soon. I was wondering, the home you bought, is it near Bristol Palin? I think she bought in Maricopa. Bob, you are such an inspiration to all on our CC site. I find you and Donna totally awesome! Have a wondeful albiet wet summer.

Hi Mary!
So glad to hear from you. That’s such a drag that Tom’s been hospitalized 2 times with cholangitis. I feel for him. Such GOOD news that he is still cancer-free! I am too. However, its a little bittersweet because I’m still having bile duct issues. Still attached to all 3 bags. The doctors tried using a fibrin glue to seal the leak but it didn’t work. 3 weeks ago they injected alcohol into the area of the leak. The idea is that the alcohol will kill the cells surrounding the leak and then the area will scar over. I don’t know if it is working or not. The procedures take a lot out of me and I’m really losing my appetite for them. Just about the time I’ve recovered, its time to go back in to try something else.

My doctors tell me not to lose hope. They seem to keep coming up with different things to try. Meanwhile, I’ve applied to graduate school in the Fall and am hoping I’ll be well enough to attend. It would be great to use my brain again!

How’s everything with you?

Hugs,
Betsy

Wow Bob, you are a trooper. I have gone septic once and ended up in ICU for 2 weeks; I can’t imagine 3 times! Sounds like it was meant to be finding your surgeon! I believe you are a living miracle and sounds like you are doing well. God bless you and keep getting better. Nancy

Hi Bob,
I haven’t been on for a while either pretty much due to the same reasons and a broken computer! I am really glad you are doing so well! Wow, it is really great that you were able to have surgery again. I hope this solves your infection problems. You have been through so much. Tom also is continuing his battles with infections. He has been hospitalized twice since March with cholangitis. He is finally feeling better now. No signs of cancer- he will have his 5th year anniversary in June. Take care of yourself and know we are all thinking of you and wishing you the best!
Betsy,
How are you? Are you still dealing with drain problems?
Best wishes to all, Mary

Hi Bob,

No apologies are need from you at all. Thank you so much for your post and for letting us know everything that is going on with you. That sure is a lot that you have been through lately and thank you so much for sharing it with us all. I am so glad that you are now home and I hope that you make a great recovery.

My best wishes to you,

Gavin

Bob, glad you found the ‘right’ doctor. My circumstances were a little different, but I found the ‘right’ doctor through a fortunate and fateful phone call to a doctor to get an ERCP done, after the local gastroenterolgist called someone in Baltimore he trusted, and the endoscopy doctor he called was on vacation. I called a cardiologist I’ve known at NY Presbyterian for years and she got me scheduled for the ERCP the following Tues (my call was on Fri). There were a few more bumps in the road, which I won’t bore you with, but I was operated on 4/9/09 with a successful resection. As the cardiologist told me after the surgery, “God hasn’t decided to call you quite yet.” As this all turned out, I ended up with a brilliant surgeon, Dr. Tomoaki Kato.

I still reflect on how my case might have unfolded were it not for that fateful call on a Friday afternoon to Dr. Sun Hi Lee, the cardiologist. I’m sure Dr. Lawrence Koep occupies a similar place in your mind. I hope your recovery proceeds well. God bless the wonderful caregivers, whether they be doctors or family or friends.

Hi BOB!!!! So glad you are doing well even though it is a slow recovery. If you and Donna are still here I would love to see you. Don’t know if you meant you were home here or there? Guess where I just came from? Dr. Cavalcant. He is upping my PET from June to now just to make sure about some things going on.
I am so glad about Dr. Koep as I would go to him or his partner (we actually did) Dr. Cashman. All sounds good and I think about you and Donna often. Keep up the good work and God Bless.