Hello

Viewing 15 posts - 1 through 15 (of 32 total)
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  • #58894
    marions
    Moderator

    Matt….we are in this together…all the way.
    Hugs,
    Marion

    #58893
    justmatt
    Member

    Thank you all for the support and encouragement. I spoke to my supervisor and told her I wanted the day of Virginia’s surgery off (whenever that may be, hopefully first week of April) and she was very understanding. I can’t be there in person, but I will definitely be in touch with her husband that day. Her mass was approximatey 2×3 cm. a little less than a month ago, so I guess(?) that’s good, I’m just hoping it hasn’t spread or grown much since then. Anyway, just wanted to say thanks to y’all for being here, it means a lot to me.

    #58892
    lainy
    Participant

    Matt, this is just the best news ever! Patience is the key here. All in due time and actually they really got her in quickly! We are all so happy about this and the cheerleading has started!!!

    #58891
    peggyp
    Member

    Hi Matt,

    I’m glad to hear that your sister is going to Mayo and has a concrete plan. The doctor’s credentials sound good and you sound more confident with him. You’re right, CC is a war. It’s very scary, like a roller coaster with all its bumps and curves. I will keep Virginia and you in my prayers and hope that the waiting game won’t seem like forever. PeggyP

    #58890
    justmatt
    Member

    Just spoke to Virginia (I’m tired of calling her “my sister”… lol) today. She talked to Mayo. She sees CRNP there on 4/2, and talks to the surgeon on 4/3. They may be able to operate on 4/4! The surgeon is Dr. David Nagorney. I did a site search and see that several here have used him. Lots of info on him on the net, and it seems he is a very accomplished surgeon who specializes in liver resections in general and CC in particular. He has authored/co-authored several research studies on CC. So… now the waiting game begins. The more I read about CC, the scarier it is – it’s a war, not a battle. I am glad she is going to Mayo.

    #58889
    ronidinkes
    Member

    Dear Matt,

    I have a wonderful woman who can help your sister after surgery and beyond. Her name is Linda, she is wonderful, she took 24/7 care of my mother until the end.

    Her phone number is 443-310-0460.

    She is honest, reliable and I love her. My mother loved her and my mother was one tough cookie!

    My mother never went into hospice.

    Hospice came to her, she wanted to pass at home with her dogs, in her own bed on her terms and Linda made that happen.

    Linda has been with us since mom’s Whipple in August 2010, she is a gem of a find, and she is willing to travel.

    Please feel free to call her, she is ready to help you!

    Any questions you can call me at 443-465-9529

    Good Luck,
    Roni

    #58888
    Randi
    Participant

    I scanned all of my records and put them on a thumb drive and took them with me along with CDs of all of my scans that I got from the lab where they took them, as well as hard copies of everything. You can never have too much information.

    Hope all goes well at the Mayo.

    -Randi-

    #58887
    janetinfl
    Member

    When my husband was referred to the Mayo in Florida we were told to get all his records and fax them to the Mayo. This we did. Then we were told again by the Mayo that they needed his records. We told them they were faxed. The Mayo said they didn’t have them.

    To make a long story short we ended getting all his records and taking them by hand to the Mayo. Once that was completed our first appointment was made within a week.

    Since you sister is only an hour away from the Mayo, find out what records they need. Make a copy of them and take the records in personally. We have found that copies come on handy when a doctor can’t find a certain medical record that we know we personally hand carried to them.

    #58886
    lainy
    Participant

    Matt! You are awesome and I believe you just saved your Sister’s life. As a back up you might want to read some of our Posts to her! Bariatric is all about weight loss and we have enough of that already with our CC heros! I am just so happy to read your post!!!!!!!!!!!!! Go, Matt, go we are all behind you and you are not alone in this fight!

    #58885
    wallsm1
    Participant

    Matt,

    I’m glad to hear the update. I hope she is able to get into Mayo ASAP. Please let us know what happens. Like others have said, she is lucky to have you.

    Best Wishes,

    Susie

    #58884
    Eli
    Participant

    Matt,

    You are an awesome advocate for your sister. Going to Mayo is absolutely the right thing to do. It’s a big, complicated surgery. It’s really important to get it done at a high-volume center, by a surgeon with 10+ years of experience and 100+ surgeries of the same kind under his/her belt.

    Best wishes,
    Eli

    #58883
    justmatt
    Member

    Some good news: I just called my sister and she said she was about to call me for some advice. She said she didn’t feel like the surgeon was very confident. She was relieved that I called and told her to go to Mayo – Rochester. I told her to call her oncologist’s office Monday morning and let him know that she has decided to go there and needs to get in ASAP. I told her if they aren’t responsive enough, to call her GP and tell him the same thing. Burn up the phones in whatever clinic’s office until she gets what she needs.

    She really questioned this surgeon’s abilities after he made the comment that it is on her vena cava “but if we cut it, we’ll just stitch it up”.

    #58882
    pamela
    Participant

    Matt,

    I think it is really awesome that you are taking such an active role in your sister’s care. I sure would want someone like you in my corner!! I hope everything works out for you and your sister. Take care and God bless you both.

    -Pam

    #58881
    justmatt
    Member

    (con’t) perienced surgeon.

    #58880
    justmatt
    Member

    First, let me say that this site – the people here – are awesome! As I read the responses, I realized that your concerns are exactly the same as mine. I spent hours last night finding out as much as I could about this surgeon and clinic. Lainy hit the nail on the head – there is very little information about him or the clinic (when it comes to liver resection / cholangiocarcinoma) out there. I did find the a PDF file entitled “Ayman Al Harakeh, 2009-2010 Fellow – Fellowship in Minimally Invasive Bariatric Surgery and Advanced Laparoscopy” that was from the clinic’s website. The best I can make out, he did 124 gastric bypass surgeries that year and ONE liver resection!
    I’m not sure how to put this… we grew up very poor in Iowa, our mother was a simple, caring, loving person. And my sister is a lot like her. Dad was very domineering and mom did the best she could not to make waves and to “keep the peace”. My sister has a lot of the same qualities, which has lead to several instances in her life where others took advantage of her. I am going to call her today and let her know what I think – that if it was me or my wife, I would be on Mayo’s doorstep in the morning.
    Also… the tumor is basically right on her vena cava. She needs a skilled and ex

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