Tuesday, July 24, 2012

Action! The power of Social Media

Meet the doctor - and get the lowdown

We are still shaking our heads.  My first post was Friday last week, I was at my wits end, and it's 4:15 p.m. on Tuesday and I'm back from a meeting with a specialist on the transplant team at TGH.   I actually googled images of excited people, but none of them really captured how we are both feeling.  It's frankly kind of surreal.  

Keith had a walk test (pretty standard in this world, they hook him up to all sorts of interesting wires, this time he actually got the Karate Kid treatment and had a fancy headband... Wax on...)

Our wait times were non existent, it was a highly organized waiting room/reception and after Keith's walk test we were in to see the doctor within 5 minutes.  

What was amazing, was from the time we met the doctor and were led to his room, we both felt extremely comfortable, not rushed AT ALL, and he was just amazing about reviewing Keith's file with us and ultimately, explaining the process regarding transplants.  

He spent an hour with us I'm sure.  Reviewed scan results and explained them to us in detail that had never been done in 15 years.  There are definitely areas of Keith's lungs that are showing signs of major inflammation.  The doctor did suggest a different antibiotic course over the next while as a possibility to slow down the progression.  Because of the nature of his disease (whether it is DPB or not, still debatable, this doctor didn't seem to think it really is) there is no option for single lung transplant for Keith, he needs a double lung transplant.  

At this point, the doctor began to explain the process of double lung transplants from beginning to end. To keep this post short and sweet, suffice it to say even after all of the downsides were presented to him, Keith said without hesitation "I'd rather have options, than what I have now, which are none".  

We are moving forward.  Keith's file has been sent to the assessment committee.  Although we are told this could be another three months before we hear from them, we were also told that if he continues to decline as he has been, to contact them and the doctor would see about speeding things up.  

Thank you to each and every one of you for your good wishes, prayers, and positive energy.  It has helped in so many ways and we appreciate it more than we can express.  


People have asked how they can help.  One thing that is so important for all of us is to ensure that you have visited beadonor.ca (for Canadians) and registered ONLINE in addition to having signed your organ donor portion of your license.  Nobody likes to think about this part of life, but we all benefit in so many ways by doing this small important thing.  Thank you. 



5 comments:

  1. Bask in feeling better about knowing what the options are, let yourself feel good today. I'm thinking of you Sarah, best to both of you and yes EVERYONE should be a donor

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  2. So glad to hear you had a productive and positive day!
    Here is the link for your American friends to register for organ donation, I have been on the list for several years now.

    http://www.organdonor.gov/index.html

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  3. So great the ball is rolling. Brings back many memories. Those headbands rock! Lol. The team at tgh are amazing the PFT lab technicians are great too. Every time I go in there themes greet me with smiles.
    Keep positive!

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    Replies
    1. Shannon marshallJuly 24, 2012 at 5:33 PM

      Sorry forgot to add my name. It's Shannon

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  4. I hope something good comes from your visit to TGH. You have done a lot to reduce the progress of the disease and have been living with the disease longer than almost everyone who has ever contracted the disease. I would like to see a positive article written about you in the future.

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