Topic: "tubeless..." update

First, please accept my apology for having been absent for awhile. A combination of being mostly in the hospital since the end of Feb. and trying to deal with the loss of several CC friends (Teddy, Kris, Dave Graff to name a few) has kept me away.

Some may recall that at the end of Aug. I had a drain tube removed which had been in place for eleven months with high hopes that this would put an end to the recurring bouts of cholangitis. I did real well for nearly 2-1/2 months but in early Nov. ended up in the hospital with yet another infection. Then again in Dec., Jan., and Feb. and from the end of Feb. I was sick all of the time and spent most of Mar. in the hospital. While in the hospital in Mar. I went into sepsis. They spent 2-1/2 hours in ICU working on me to get me stable and I spent two days in ICU. So where's the good news? Well, I met a surgeon by the name of Lawrence Koep who came to visit with Donna and I in my room. He spent an hour asking questions and listening to my story. He said "Well, you can't go on living like this". "I don't know what it is going to look like yet but we are going to fix this". This was the first good news Donna and I had heard. My Seattle doctors (we're in Phoenix right now) didn't have an answer. One said that they could resect the left lobe without explaining how that would help. While they had me in the hospital (Banner Good Samaritan) they spent two weeks looking at all of my records, previous surgical notes,  performing new tests and having conversations with my Seattle docs. At this time, Dr. Koep and his team were looking at my case from all angles trying to find the right solution. They finally decided that they could re-do the surgery from fourteen years ago with a good degree of a successful outcome. My original surgeon said that it couldn't be done. On Mar. 31, they opened me up along the long original scar,removed a bunch of stones from both the left lobe and right lobe of my liver, removed a fair amount of scar tissue from the original radiation treatment, resected the original anastimoses to get clean tissue to work with and made a new connection between my liver and the jejunum. The doc says that the surgery went better than expected. He admitted to Donna that he was very relieved to find no cancer though he had dismissed cancer in our discussions. He later said that the symptoms indicated cancer though the tests couldn't find any. I am home today SLOWLY recovering. It has been a tough one but the outlook is good.

As an aside, after our first meeting with Dr. Koep, Donna and I could clearly see the hand of the Living God in the process. We had come to the Phoenix area two years ago to find a winter home ( so we thought) when in fact we had been directed here to meet Dr. Koep. You see, there was a certain unspoken inevitability in these cholangitis attacks. It was never going to end well. There is a very high risk of sepsis which we have been told is fatal in about 50% of the cases. I have had sepsis three times - do the math. As Dr. Koep told two of my sons during a consultation before surgery when they asked about the risk of the surgery, the real risk was doing nothing. He told them that if he didn't do something they would watch their Dad die. This could be my second miracle. Thank you God - may my life be pleasing to You my Lord...

Thank you CC friends for allowing me to tell my story. May God bless all of you and give you peace.

bob

Re: "tubeless..." update

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.

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: "tubeless..." update

Bob,

It's so good to hear from you!  Your news is wonderful!

Like you, I have not posted much since our recent lost of so many friends with cc.   Just not the same, yet.  I guess it has all hit too close to home for me.

God has been by your side through this whole journey. 

Thank you for posting! 

Take care.
God bless.

Kathy

4 (edited by Jim Wilde Wed, 20 Apr 2011 19:13:55)

Re: "tubeless..." update

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.

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: "tubeless..." update

Bob,

Lovely to hear from you, especially when it's such good news.

Take care

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: "tubeless..." update

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: "tubeless..." update

Hi Bob,
So glad to see your posting.   i know what you mean about "staying away" from the site due the passing of so many dear people.  I feel the same way. 

I'm wishing you the best as you recover. 

Betsy

Re: "tubeless..." update

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

Re: "tubeless..." update

Hi Mary.....you must have felt the vibes as I have been thinking of you and Tom.  Sorry to hear about the consistant problems with the infections.  This site could print a book on this subject...infections, infections.  Great to hear that Tom is feeling better.
Although, I so much understand for many of you to want to stay away from this board for various reasons however, it always is great to hear from a familiar person.  Just know that you are missed and that tons of good wishes are coming your way.
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: "tubeless..." update

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

Loving my husband from afar.

Re: "tubeless..." update

Bob.....please, no apology needed when not visiting this board.  Just so thrilled to hear that again you have come through another infection and are here to share it with us. 
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: "tubeless..." update

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

Re: "tubeless..." update

Hi All,
Thanks for the well wishes. Well... I'm "tubeless" and bagless again! A week ago Thursday it came out with out much fanfare. I had several days of low grade fevers and generally feeling sick. Then, I awoke at about 3AM Monday morning all sweaty - pillow and sheets wet. I went back to sleep and when I awoke at 7 I felt like a switch had been turned on. For the first time since the surgery I felt like myself (albeit with the strength and stamina of a twelve year old girl) and since then I've only had two episodes of feeling a little unwell. So... as of Sunday morning we are off on a leisurely road trip back to Seattle for the annual 'rain festival'. Donna's not ready to leave sunny Maricopa knowing what the weather has been in Seattle but we are both missing family and friends. It's time...

By the way, Lainy among others is always recommending second, third and even fourth opinions. My story has the good prospect that it does because we saw a third surgeon. The two best liver surgeons in Seattle had no real solution for my blocked duct. But the third "opinion" from Dr. Koep was that something had to be done. The greatest risk was in doing nothing so he and his staff put together a plan and did the surgery. He is convinced that I will have no more cholangitis infections. I pray that he is right.

God Bless!
bob

Re: "tubeless..." update

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. smile:)

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: "tubeless..." update

Hi Bob...congratulations on your outstanding news!  I am a new member of the discussion board, but have been monitoring this website over the past 21 months, ever since my brother was diagnosed with cholangio.

I just wanted to let you know that your postings have been of great help - and have provided my brother, and my family, with hope!!!!  Although he does not post on this site, I copy and paste information that you and others have shared and send this to him often via email. 

I am so grateful to know that you found Dr. Koep (or he found you)...and share with you the thought that sometimes we are led to the right doctor. 

Will keep you in my prayers!

Patti

Re: "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