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Dee L

Royal Free Hampstead appointment

10 posts in this topic

Hi all

 

I am visiting the Royal Free Hampstead on Thursday 26th April (this week) and wondered if anyone else will be there that day and fancies meeting up for coffee?

 

I have systemic scleroderma with pulmonary fibrosis and myocarditis and would love to chat with anyone who has similar or anyone who just likes to chat!

 

If you are interested, pm me.

 

Dee

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Hello Dee

 

Sorry, was there earlier in the month! Enjoy your appointment, you know you will receive expert care.

 

Take care.


Amanda Thorpe

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Hi I hope today went okay for you. My husband has lung fibrosis and systemic scleroderma so have some understanding through my husband what it is like and what you may be going through.

 

What treatment do they have you on?

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Hi Sooty30

 

Thank you, my visit to the Royal Free was very good. I met Dr Shreiber for the first time.

 

How long has your husband had SSc and lung fibrosis? I would love to hear more about him.

 

I have had SSc since 2008 and the lung fibrosis was discovered June 2011. Since then I have had six pulses of Cyclophosphamide and two courses of rituximab which appears to have had an effect. Since my visit last week they have introduced me to Mycophenolate and the plan is to refer me to Prof. Wells at the Brompton for further tests.

 

I look forward to hearing more from you about your husband.

 

Dee

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Hi Dee,

 

You couldn't be in better hands than Prof. Wells and his team at The Brompton! ;) He treated me and hardly a day goes by when I don't thank my lucky stars that I received such fantastic treatment from him.

 

How can I ever thank him enough?

 

Kind regards,


Jo Frowde

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Hello Dee

 

I describe Dr Schreiber as the world's best rheumatologist ever and prefer seeing him to about anyone else. Last time I went he wasn't there and although I saw a nice doctor it wasn't the same.

 

Take care


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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My husband was told he had scleroderma only in last few months. They have only just said he has lung fibrosis in last few weeks, he only has a 50% of his lungs working.no air entry at the base of his lungs.

 

We were going to start on the cyclophosphamide but they have been in contact with The Royal Brompton and they feel my husband it could be harmful if he waits for the cyclophosphamide to be set up so we are starting the rituximab on Tuesday. He will have 2 lots of this I think maybe cyclophosphamide later down the line. He has been on the mycophenolate for a few months.

 

He is struggling at the moment, not able to work and get about, starting to get him down. Have also just applied for a blue badge after the advise from his general practitioner and company general practitioner.

 

That's fantastic that things have helped since you had the rituximab. How did you feel afterwards? Did it make you feel unwell? Better dash as off to work, lovely to hear from you.

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Hello Sooty30

 

I have a friend who has had scleroderma for 30 years with ony 50% lung function from pulmonary fibrosis, last seen walking around in the shopping centre!

 

Consider applying for disability living allowance which is not means tested and you can still be working. Your general practitioner and consultant(s) will support the application for sure so go for it. Also you have got to get your husband a wheelchair, it's going to be the only way he can get out of the house at the moment.

 

Enjoy the blue badge and remember to tell us your funny stories you will encounter as you try to park in disability spaces. Check out my blog about it!

 

Take care and I promise not to say anything else about the wheelchair.


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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