betsy
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Hi Kristin,
Glad to know you are alright. Thanks for the info. Hope you are feeling o.k. now.
Hugs,
BetsyI heard from the Mayo Clinic in Rochester and they said there was no surgical fix available and I should “stay the course” with the Cleveland Clinic. University Hospital was more aggressive and wanted to pursue surgery. I met with my doctors at the Clinic and have decided to stay with them and continue with their treatment plan. My surgeon said he would not perform surgery at this time but may have to in the future. He said surgery is if everything else fails….surgery carries so much risk, if it doesn’t go well, there is nothing else he can do for me except palliative care. I guess I don’t have any other options right now. I think the biggest problem will be developing resistant infections. On July 12th, I’m going to have a 3rd stent placed. Yuck.
Also, just an F.Y.I. my surgeon recommended Pittsburgh Medical Center and Northwestern as good hospitals for surgery and radiology.
Betsy
Donna9,
I like that idea much better and actually comforts me. I was at a July 4th picnic today and was told that my suffering in this life was redemptive and was helping my deceased brother in the afterlife. I really didn’t know what to say to that.
Betsy
Jtoro –
I went in or a physical because of weight loss – I thought I was depressed over my Mom’s death a couple of months earlier. After blood work and x-rays, my doctor found my tumor. I had no other symptoms…no jaundice, no abdominal pain, no itching. The doctor said, based on the size of my tumor, it had probably been growing for a couple of years.
Betsy
I hate being told that God never gives us more than we are designed to handle. If one more person says that to me or gives me a book about it, I’m going to scream.
Betsy
Kris,
I laughed out loud at the eating cake comment! Its good to be able to laugh about this stuff with you. I know my jokes fall flat with my family and friends. This always makes me laugh….I tell my husband not to worry about my credit card debt – ha can pay it off with my life insurance policy when I die. Even sounds sick writing it, but I still laugh.
BetsyHi Brian,
I have been dealing with leaking bile duct issues since January of this year. Its my understanding that bile duct leaks, most of the time, heal on their own and the preferred method of treatment are stents. Its also my understanding that they usually heal in about 4-6 weeks. In my case, since I’ve had liver surgery 2 times already, my doctors are being very conservative in their approach. I’ve had stents since January. I may be running out of interventions and approaching surgery for a third time but I do want to emphasize that everyone heals differently. One word of advise is to be sure your brother is getting adequate antibiotic coverage.Betsy
Hi Julia,
I struggle with this issue so much that I can’t believe I’m going to even comment But I have gained a little insight into this problem. I’m kind of going through this stage of resignation and its sad but its also kind of a relief. I’ve started thinking about things I can do. For example, I’ve gotten involved with the local chapter of the American Liver Foundation. They totally understand my circumstances and are so supportive and eager to hear from someone like me. I invested in an Ipod touch and a MacBook. These 2 tools provide tons of entertainment, keep me connected to people when I can’t get out of bed, provide “snuggle” time with my kids (who have to show me how to use the darn things!) I’ve also started looking at classes online – anything that interests me – doesn’t have to be work or career related – just something to keep me going. These things have helped me to feel better about myself and beat the boredom that comes with sitting around every day.
This is a process for me that keeps evolving. Tell you sister to take heart, she is not alone in her feelings. One of my girlfriends told me, “Betsy, being productive is so over-rated!” I think she’s right.
Hugs,
BetsyI’ve been seeking more opinions re. my bile duct leak. The doctors at the Mayo Clinic in Rochester said they wouldn’t do anything different than what the Cleveland Clinic is doing…..stents. University Hospital suggested that I have a new MRI and MRV/MRA/MRCP taken as well as re-culturing the bile in the drainage bag. The U.H. doctor said sometimes bile ducts don’t heal due to ongoing infection, poor blood supply to the duct or recurrent disease. It turns out I have VRE (vancomycin-resistant enterococci) and am taking Zyvox for it. I didn’t even know I had an infection because I haven’t had a fever. I’ve been on Augmentin and Cipro for months. But this bacteria is resistant to Augumentin. The only one it responds to is Zyvox. Anyone had experience with this kind of bacteria and/or antibiotic?
I don’t know if this will make a difference with my leaky duct but I’ve learned more about this problem.
BetsyHi Lainy,
I’m so devastated for you and Teddy. I don’t have any chemo. advice to recommend but I am sending lots of hugs.Betsy
Rick,
I do not understand how the radiologist missed the a 4cm tumor. Unbelievable! I’m so sorry this has happened. Please post an update as to what your Mayo doctor will do.
Betsy
Thanks Gavin,
What a beautiful tribute. I was deeply moved by the pictures. I’m glad you posted their story.Betsy
Hey Kris,
Thanks for the info. re. alcohol.
My doc said I can have an occassional 4-6 ounces of wine but I find I don’t feel good at all afterwards. I did have some kind of amazing cocktail on my birthday and it was worth feeling a little crappy later on. Summer was my favorite time of year for cocktails – I did love a good margarita or a gin and tonic with lime. Do you feel lousy after a drink?Betsy
