Discussion Board Forums Introductions! Introduction My brother’s fight with Cholangiocarcinoma

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  • #86824
    middlesister1
    Moderator

    Dear Lorraine,

    My heartfelt condolences are with you. I am so very sorry. You were so supportive to your brother and I’m sure that helped him over the past years.

    Take care of yourself now.
    Catherine

    #86823
    lainy
    Participant

    Dear Lorraine, I am so very sorry about Donnie and please accept my most sincere humble condolences. He was a brave warrior and now is at peace and healthy!

    I’M STILL HERE
    I’m at your side each night and day,
    In your heart is where I’ll stay.
    You can feel, see or hear, I am not gone, I’m always near.
    I’m the colorful leaves when fall comes round,
    The pure white snow that blankets the ground.
    I’m the first bright blossom you’ll see in Spring.
    The first warm raindrop that April will bring.
    I’m the first ray of light when the sun starts to shine,
    And you’ll see that the face in the moon is mine.
    I’ll whisper your name through the leaves on the trees,
    And you’ll feel my presence in the soft summer breeze.
    I’m the salty tears that flow when you weep,
    And the beautiful dreams that come while you sleep.
    I’m the smile you see on a baby’s face.
    Just look for me, I’m every place!

    #86822
    darla
    Participant

    Dear Lorraine,

    I was saddened to hear that Donnie has passed away. You and your family have my deepest sympathy. Take comfort in memories of the past and keep him with you forever in your heart and those memories. My thoughts are with you all at this sad & trying time.

    Hugs,
    Darla

    #86821
    gavin
    Moderator

    Dear Lorraine,

    I am so very sorry indeed to hear the news of Donnie’s passing. Please accept my sincere condolences. I feared that this may have happened as we had not heard from you or Donnie for a while. Please know Lorraine that my thoughts are with you and your family right now and know as well that Donnie will never be forgotten around here either.

    I know there are no words that will help ease the pain that you feel right now but please know that we are all here for you always. And know as well Lorraine that you can contact me off board anytime if you want to as well. Thinking of you and your family right now.

    Hugs,

    Gavin

    #86820
    marions
    Moderator

    Lorraine…..my heart goes out to you and your family. Know that Donnie is in forever engraved in our souls. He we not be forgotten and he will continue to guide us in the drive for finding answers to this insidious disease.
    Hugs and love,
    Marion

    #86819
    debnorcal
    Moderator

    Lorraine,

    I am so very sorry for your loss. Right now I have no words to describe the
    sadness I feel over Donnie’s life being cut short by this terrible disease. Please know he and you are in my thoughts.

    Debbie

    #86818
    lorraine-scotland
    Participant

    Hi,

    Just to let you know that Donnie sadly passed away on the 23rd of May. He fought bravely for over 2 years. He died at home which was his wish. We will miss him so much. I know he would have wanted me to thank you for your advice and support. Thanks so much. We really appreciated your messages.

    Lorraine xx

    #86817
    gavin
    Moderator

    Thanks for that Lorraine. Sorry for not getting back to you sooner. This is real good news that now Donnie will be under the care of Edinburgh and I know that you both will be happier with this. Please tell Donnie that we are all asking for him and thinking of him as well. How is he doing these last few days? Hope he had his feet up and was watching the rugby today!

    Hugs,

    Gavin

    #86816

    Hi,
    Thanks for your messages. Gavin it is The Royal Infirmary in Glasgow that was treating Donnie not the new hospital. Thankfully, Donnie will now be under the care of Edinburgh except if he gets an infection and then we would have to go to Glasgow.
    Lorraine xx

    #86815
    marions
    Moderator

    Lorraine….it came together; a fantastic advocate on behalf of her brother and a willing, approachable and experienced physician taken control of the situation resulting in an excellent outcome.
    I also wanted to mention the biliary emergency card. Each and every patient wherever they reside, should have this informational card on hand. Community doctors outside of your specialized treatment team may not be familiar with the management of specific complications that may arise during your treatment. This card will provide medical personnel with information on how to contact your doctor(s) should it be necessary. If your doctor(s) cannot be reached, it will direct medical personnel to specific guidelines for your treatment
    Simply fill out the info and print using this link:
    http://cholangiocarcinoma.org/biliary-emergency-information-card/biliary-information-card/
    Hugs,
    Marion

    #86814
    gavin
    Moderator

    Hi Lorraine,

    This news from you about Donnie just made my night!! Thank You!! Tell Donnie from me…. Ya Beutie, love it!!! Give him a big hug and kiss from me as well!

    Real glad tgo hear that Prof Wigmore at Edinburgh was able to help and do all of this etc and I would say that if it was me then I would want to be kept under his care and not Glasgow’s. Do you think Prof Wigmore would be ok wit that?

    As to what and why Glasgow did not do/offer what Edinburgh did, is the hosp in Glasgow that Donnie was now being treated at the new one? A new team, perhaps inexperiened with treating CC patients, unlike Edinburgh and Steve Wigmore? Just thinking out loud here.

    Hugs,

    Gavin

    #86813
    lainy
    Participant

    Oh my, Oh My girl, you have made my day!!!!!! YIPPEE!!! Lorraine EXCELLANT! No answers to give for me as we honestly don’t know the whys and wherefores, but do know some of the better hospitals! Thank G-d you took the bull by the horns as I think most of us knew it was the simple matter of a stent exchange. You will now see a much better brother come alive again!!! I am ecstatic, I am over the moon! Can you tell? IF an infection recurs down the road I feel an hour and a half is not too far to save a life. Especially if it is found right away. You know what to look for now. I do feel a celebration is in order! Oh, how I wish you all the very best now to come!

    #86812

    Hi,
    Lorraine here. Really good news. Professor Wigmore arranged for Donnie to be admitted into The Royal Infirmary in Edinburgh. He was admitted last Monday, had CT scan on Tuesday and got his drain replaced on Thursday. He got the great news that the tumour has not progressed. The drain is now working wonderfully. Such a relief! It was blocked and it urgently needed replaced given the fact that it had been fitted 9 months ago.

    The main thing is that all this has now be done and we are so grateful to this forum that spurred us on to contact Edinburgh. However, we are left with questions. Why did Glasgow say a CT scan was too risky when Edinburgh did not? Is it a question of money? Why did they say It was too dangerous to replace the drain when Edinburgh said it was relatively straight forward? Do Glasgow lack the knowledge and expertise to treat patients with CC ? How could all the doctors at a multidisciplinary team meeting agree that nothing could be done for Donnie when clearly it could? Is it that they just agree with what ever the main consultant says. If so, what is the point of this meeting? Don’t worry I do not expect answers to all these questions but wanted you to know our train of thought. We were told in the past that there was nothing Edinburgh could do that Glasgow could not do. This is clearly not the case.

    We are not sure the best way to express our concerns. If Donnie were to get an infection he would need to be treated by Glasgow. An hour and a half journey through to Edinburgh would not be an option especially if it was cholangitis which he has had in the past. However, we have no faith or trust in Glasgow anymore. They let my brother down big time. However, I feel we have a duty to protect future CC patients who may be put in Glasgow’s hands.

    Thanks again for your support. It has been invaluable.

    Lorraine xx

    #86811
    gavin
    Moderator

    Hi Lorraine,

    Sorry to hear the latest news from you about Donnie and the shocking treatment that he is getting at Glasgow. Just thought of something. The Royal in Glasgow. Is that the huge new hospital that was recently opened and where ,many patients from surrounding areas were transferred to? If so, I assume that Donnie as an outpatient was transferred there as well, at least he would be as an outpatient? My point is, is his care now under a GI specialist that was treating him before his care was moved to the new RI?

    My thinking now would be to see if I could get my care done by Prof Wigmore and his team and his team alone. Northing more to do with Glasgow if that could be done. Maybe you could ask Steve how he feels about that as he clearly feels that he and his team could do things for Donnie that would help. How about asking Prof Wigmore if that would be an option?

    My best to you and Donnie.

    Gavin

    #86810
    marions
    Moderator

    Lorraine……..agree. You deserve a clear answer and no one seems to give it to you. There are clinical reasons for Donnie’s condition i.e. increased bilirubin levels and whether it is related to liver cirrhosis or other causes. Not necessarily does this demand a CT or MRI because; a patient’s medical chart contains the information needed for physician interpretation of health status. Donnie has a right to know the underlying causes of the present conditions.
    Personally I experienced a similar situation with my mother’s physicians in Germany. We were told that she had suffered a stroke and no further information was given. I am used to and appreciate American physician’s openness in re: to clinical information sharing with patients and their requested loved ones. Unfortunately, that’s not always the case in other countries. So, I waited it out and stood by the door while medical personnel (doctors and nurses) had to pass by me to tend to my mother. My sister was aghast by my behavior, but eventually it paid off and the leading physician asked to speak with us in private.

    I would not give up, Lorraine, people throughout the world read or participate on this forum and all of us want to be assured that Donnie is treated humanely and kind and tended to with expert care.
    Hugs,
    Marion

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