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Joelf

Lung Function Tests

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Today I went for a lung function test halfway through my IV Cyclophosphamide & Predisolone treatment & :happy-day: .......my oxygen & carbon dioxide transferance has improved from 48% to 65%!!! :emoticons-yes:

I was well pleased as although I feel that my lungs have improved it's nice to have it confirmed & make sure I hadn't just imagined it! I'm due another test at the end of the treatment (Dec.) so hopefully it will have improved even more by then.

Three cheers for The Royal Brompton Hospital & their wonderful team.........how can I ever thank them enough?


Jo Frowde

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WHIHEW! JOELF!

Dee De De De Deee De DOIN THE HAPPEEE DANCE !

Thrilled for the progress Jeolf! De De de Dee De De Lah la lah

You are an inspiration to us all!

AWSOME

Sandra

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Way to go Joelf! :emoticon-hug: It's great to have a fab medical team on your side and to reap the benefits of treatment particularly when it can have unpleasant side effects, makes it all worthwhile!

 

Look forward to even better news in December. :jump-for-joy:

 

Take care.


Amanda Thorpe

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Thanks very much for the lovely supportive messages, folks :wub:

 

My husband and I are celebrating tonight with a large G & T each.

 

Cheers!!! :D


Jo Frowde

ISN Assistant Webmaster

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ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Joelf that is wonderful news & I"m not surprised you feel a celebration is called for so do have a G & T on me.

 

Buttons

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Good for you! Great to be moving in the right direction and have some peace of mind.

 

And even when you know in your gut or heart, it's nice to have it confirmed, isn't it? :emoticons-yes:

 

Northend Poet


Northend Poet

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Hi Joelf

 

You were kind enough to reply to my post in (August?) concerning my wife, who had just been recommended the course of treatment that you are having. I am delighted that you are having such a good reaction, and it will also give great encouragement to my wife, who has just had her first IV.

 

Well done to the Brompton and to you!

 

Regards & best wishes

 

 

Andrew

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Joelf, that's truly fabulous news! jump-for-joy.gif (Jumping for joy, if you hadn't guessed.) We'll all be looking forward to hearing December's results - good news is always welcome.

 

Warm regards,


Jeannie McClelland

(Retired) ISN Director of Support Services

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Hi Joelf

 

At what point did 'they' decide on that course of treatment? I only ask as my lung function showed a transfer of 56% and at the moment I am only on inhalers, which I am finding do not help as much as they used to. I am just wondering if I might be offered something else. The consultant sent a letter to my general practitioner saying if I presented with breathlessness (which I did) they would have to consider the pulmonary unit at Newcastle.

 

Tina

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Hello Tina

 

It may be an idea to see your general practitioner and ask for the referral to be made rather than wait, as with anything the sooner treated the better. It would also give you peace of mind knowing your breathing problems are being investigated.

 

Although we may have good doctors it helps us to engage in our treatment rather than put all the responsibilty onto our doctors. Being your own advocate is very empowering as you feel you have some input into the decisions being made about you.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Tina

 

I have been very, very fortunate in the treatment of my Interstitial Lung Disease; I was fortunate that the general practitioner I first went to when I had a dry cough that wouldn't go away realised that it wasn't 'just a chest infection' & sent me for a chest x-ray & then sraightaway sent me to a chest consultant. I presented the classic signs of breathlessness along with the dry cough & again was fortunate that the local chest consultant I saw first of all realised that it was a serious lung condition that was outside her expertise & refered me to a top lung consultant, Prof. Wells, at The Royal Brompton Hospital. I was again fortunate because at The Brompton they realised it was progressing quite quickly & had me in straightaway for virtually every lung test known to man; I was again fortunate that they knew all about Scleroderma & lung involvement & were able to diagnose it correctly & start me on the best treatment available & finally it was again fortunate that I was physically very fit & as my lung disease was identified early it has a fairly good prognosis & Prof. Wells felt confident that he could reverse the inflammation (although not the scarring obviously!! ;) ) on my lungs which is why the lung function tests showed an improvement. :)

 

Hardly a day goes by when I don't send up thoughts of thanksgiving to Prof. Wells & his wonderful team; the NHS has certainly come up trumps for me!!! :emoticons-yes:

 

Kind regards x


Jo Frowde

ISN Assistant Webmaster

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ISN News Manager

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International Scleroderma Network (ISN)

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Hi All

 

Just a brief update on my treatment.

 

I went for a Lung Function test & then saw my consultant again & my TLCO (oxygen & carbon dioxide tranferance) has improved to.......73%!!!!!! :happy-day: :happy-day:

 

I am now officially one of their star patients; ;) both my consultant & the nurses said that it was one of the best results they had ever seen!!! :emoticons-yes:

 

I know that I'm always banging on about the NHS but I owe The Royal Brompton Hospital & Prof. Wells' team a tremendous debt of gratitude. I thanked the consultants & nurses profusely as I shall now be treated more locally & The Brompton will just oversee my treatment every 6 months or so, as will The Royal Free. I start on Azathioprine tomorrow & they seem confident that, coupled with the low dose of Prednisolone, I have got an excellent prognosis.

 

I do so hope that my post will give lots of encouragement to others on the same treatment as I have had; it's not exactly a barrel of laughs having IV Cyclophosphamide but it does seem to be very effective particularly in cases where there is a lot of inflammation so I think it's worth it!! ;) :D


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thats great, well done Joelf!!

I hope you do well on the azathioprine and prednisilone. What a good improvement.

 

Big hugs

Debs :emoticons-yes:

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