An exchange

Hudson Institute of Medical Research,

Melbourne.

Dear Professor Jenkins,
you will no doubt have millions tugging at the hem of your gown if you can improve the lot of us with emphysema, correctly described by Professor Simon Chapman, as the most “wretched” of the tobacco related diseases.

I am in late Stage IV COPD and was diagnosed with severe emphysema aged 42. My mother and uncle had also died prematurely of this disease, as had several bakers among my ancestors.

I am 59 and my FEV1 is 12%. I am on O2 during the day and have battled wasting and most recently am coping with a diagnosis of severe osteoporosis while my lungs have been colonised with pseudomonas.

I am writing to thank you for your work. To cheer you on.  It may not yield fruits in time for me, but I hope others may be spared from this fate.

All the best and no reply needed. I know you are a busy man.

Kind regards, etc

Dear Barbara,

thank you for your email and interest in our work, much appreciated.
Yes I am receiving many such emails currently.

The drug you would have seen in the story is about to undergo clinical
trial testing in Europe for inflammatory bowel disease. As stated in
the story we need to wait for the results from that trial to come
through first before we consider using it for selected lung cancer
and/or emphysema patients. We believe it will take at least 2 years
for all the information from that trial to become available to us. So
we would not be setting up any trial here until at least that time.

I realise that this time frame is not what you probably want to hear,
but unfortunately medical research discoveries and getting approvals
to give patients drugs based on these discoveries is a time-consuming
process.

I can assure you that we as researchers are doing the best we can to
ensure discoveries are passed onto patients as soon as possible.

For any updates on this work, best to refer to our website:
http://hudson.org.au.

Thank you for your kind words of support, and best wishes.

Brendan

Judith Durham, aged 73, still living with a lifelong lung disease:

 

 

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15 thoughts on “An exchange

    • Thanks M. The real shame is how little money has been spent on treating what is now the worlds 4th biggest killer.
      As the professor said, not the time frame I probably wanted to hear, but it’s good to know help is on the way.

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  1. When time goes by without a word from you I think well it’s over. Thankfully it’s not yet. Your words mean so much to so many and I thank you for the education you’ve provided me about end stage copd. In other blogs and posts it’s all so upbeat and doesn’t match my reality as yours has. Thanks again for that.

    Liked by 1 person

    • ))))))))Sharon(((((((
      Yep. Still here!
      A survey shows we COPD sufferers lack self compassion and blame ourselves for our disease.

      Of course we have a part in smoking. But, and it’s a big butt, Big Tobacco knew in the 1970s that smoking caused emphysema.

      They manufactured doubt through paid doctors/experts and I happened to be a 15 year old girl with a few problems at that very time. I smoked, drank and rode motorbikes. I was a young journo and soon mastered the art of smoking while typing!

      I look back now and sigh deeply. I believe the younger you start the harder it is to pry off nicotine’s stinky yellow fingers.

      My world is very, very small, because I smoked.

      As the songs goes, “Everybody Knows . . .’

      Having said that, my life brightened considerably this winter Downunder with the installation of heat pumps and state of the art air filters.

      I am sad for the millions, yes millions, of us, who struggle in harsh conditions and endure poverty and open cooking fires.

      Very grateful for a solid healthcare and pension system in Australia.

      I am looked after and loved. I am lucky and I know it.

      Sending you my very best wishes, Sharon. Write again. Tell me how you are.

      Life is still sweet; still more good days than bad ones.

      x Barbara

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  2. Power to ye, dear Barb – and, as i sometimes said over this side of the Ditch – Paua to the People! and to you, in not-so-good and good days… Arohanui 🙂

    Liked by 1 person

    • Very funny. Good morning 🙂

      Tim, the silver lining has included reading marathons, (Annie Proulx ‘s masterwork; movies; music, music, music and a growing peace around my worsening situation.

      You have time and time again forgiven me my slackness and I am very grateful because so much is now left undone. As it must be; as it should be. But thank you for all your reaching out, your small kindnesses, your big heart and your recognition of a fellow writer as we pass. A nod to the guild.

      Love to you and say hello to our all pauaful mutual friend.

      Arohanui Barb

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      • Thanks to you! The ‘leaving undone’ is i trust part of the peacemaking – yes, as it should be… But these wee connections are each finely carved unique wee wood door knobs, opening doors in precious ways. Some with paua inlaid, of course. The guild (i’m sure of this) warmly acknowledges your nod. And i will greet our all pauaful friend with you mind…`

        til the next doorknob catches our eyes – with love xx

        Liked by 1 person

  3. Hi Barb,
    It is shocking and tragic that lives are lost whilst curative treatments are just around the corner. So many improvements, who knows when and what next. Your strength in adversity is incredibly inspiring. I try to live gratefully though take so much for granted. The sharing of your story through social media is powerful. Kia kaha ,arohanui. Sue xxx

    Liked by 1 person

  4. Hi Barb,
    I am so pleased that * the departure lounge * comments showed up again on my screen.
    ” A pinch & a punch for the 1st of the month ” ( very very gentle ones )
    As always you inspire me to be more grateful , accepting & tolerant. Thank you.
    I have tried to imagine how it would be operating on a 12% lung capacity & I cannot.
    Please remember we love you,think about you heaps just have not shared that with you or Frances for ages ,sorry .
    The sentiments are there, the literary skills are not. However I refuse to undo the above just to satisfy my inner voice .

    So hope you are sleeping right now . Special love Jules xoxxoxoxoxooxoxoxoxoxoxoxox

    Liked by 1 person

    • Big hugs Julian, thanks for dropping by. You always have such empathy dear woman, while I’m sure your own burdens are heavy.
      Yes, I’m in a good paddock, as the locals say. We are content with each other’s company; aware that time is limited has made us treasure what we have.

      There are still more good days than bad ones, as I hope is the case for you and yours. xx Barb.

      Like

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