Photophorisis...An update on my wife'... - Lung Conditions C...

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Photophorisis...An update on my wife's battle with Chronic rejection 17 months post Tx......as a result of IPF

19 Replies

Peter MacCallum Cancer research institute Hospital, Melbourne Australia......In July last year Susan received her new lungs...at the same time the new Peter Mac hospital was opened. Today we had a look at this state of the art hospital...not as visitors...but as a patient....with fingers , and everything else crossed, we attended the hospital for an evaluation to see if Susan was strong enough (Lung wise) to meet the criteria for Photophoresis.

It does not resemble a hospital in anyway, ...more like a 5 star hotel......you do not see nurses..signage...or patients...just people walking....all part of the plan to make you feel comfortable when visiting.....I am sure we all remember as children the fear of what was going to happen to us, when we went there (hospital)........me it was tonsil removal at the age of 5......

Today the Professor in charge accepted Susan for Photophoresis...and then stunned us by asking " We can start today if you wish"...would we??? ...you bet.

We had a three hour wait before being called in to the suite.....Two hours later we were on our way home...My girl is very excited about the future....We will go back next Tuesday and Wednesday for two more treatments.

We should know if the treatment is working in around 10 days time...If it is...Bliss....If not it would appear as though we will be invited to once again go on the wait list for a bilateral lung Tx.......

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19 Replies
sassy59 profile image
sassy59

Wow that sounds totally amazing and l wish Susan every success with her treatment. Please let us know how things go. Hugs to you both xxx 💕

in reply to sassy59

Thanks Sassy..we have not spoken for a while it is so good to here from you...hope CHRISTmas was special for you...

sassy59 profile image
sassy59 in reply to

I know we haven’t but it’s good to see you Snoopy. Christmas was very special as grandson born on 16/12. You take care and thinking if you both. Xxx 😘💖

in reply to sassy59

Sounds like Santa came early to your family...Congratulations...

mrsmummy profile image
mrsmummy

That is great news. Fingers crossed for you both.

Watfordgirl profile image
Watfordgirl

That’s fantastic news. Enough to make a Snoopy wag his tail for joy! It sounds as though Susan’s had a rough time which must have been very hard for you both. She’s still looking lovely and very calm!

I’m really hoping this treatment works well and turns things around for her. Good luck - am thinking of you both. xxx

hypercat54 profile image
hypercat54 in reply to Watfordgirl

Haven't see you for a while Sue. Hope you are ok love. xx

Watfordgirl profile image
Watfordgirl in reply to hypercat54

It’s not been a good year, Bev, but I think there’s another on the way. Thanks for asking.

in reply to Watfordgirl

Thanks S.. a worrying time but both of us are optimistic about the outcome....nice to see you on here...

hypercat54 profile image
hypercat54

Poor Susan but I am glad she is able to have treatment straightaway. Fingers crossed for you both. x

veg58 profile image
veg58

Wishing all the best for your wife.

in reply to veg58

Thank you Veg

Dedalus profile image
Dedalus

All very best wishes for the treatment

in reply to Dedalus

Thank you

Carnival567 profile image
Carnival567

I do hope all goes well xx

in reply to Carnival567

Thank you...we will get an idea in two weeks...thank you for your kind words

Crankshaft profile image
Crankshaft

I will pray that it is a success. How great it would be!!

in reply to Crankshaft

Thanks Crankshaft...it would be the best CHRISTmas present anyone could receive...

PastMeBest profile image
PastMeBest

It's good to hear that there is new hope for Susan. Myself and Wifey will continue pray for you both and hope that the new treatment is successful.

May the New Year bring better things for yourself and Susan.

John aka 🐑🐑🐑🐃🐑🐑🐑

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