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Lung fibrosis update

Scleroderma myocarditis

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#1 Dee L

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Posted 27 February 2012 - 04:51 AM

I last wrote in August last year having spent three and a half weeks in hospital with heart failure and lung fibrosis and I want to up-date you with some very positive news.

After leaving St Thomas' Hospital, London I returned home to the Channel Islands and had 6 pulses of Cyclophosphamide followed by a course of Rituximab. I then returned to the Lupus Clinic at St Thomas' for a review only to be told there were concerns about my heart. The following day I saw a Consultant Cardiologist from the Royal Free Hospital who confirmed I had developed Scleroderma-related Myocarditis and my Trop T level was 300 (normal range is 0-13) and was told to return home to rest for 3 months until my next review which was in January. Those 3 months were very scary and I was very unwell, vomiting several times a day whenever I exerted myself (get up to make a cuppa!). The up-side of this is now I have lost 4 stone in weight and am wearing size 14 jeans for the first time since having my first child 25 years ago!

I have had my reviews at both The Royal Free and St Thomas and I am delighted to say that my Trop T is now down to 55 and I am feeling wonderful! I no longer use oxygen and it would seem the treatment (either Cyclophosphamide or Rituximab or even both) has improved my lung function which was an unexpected bonus. I am now doing 2 six-minutes walks around my home daily (without vomiting) and am to have an assessment at the end of March with a view to starting cardiac rehab.

My Cardiologist told me in January (on my 48th birthday) that he didn't think I was going to make it - oh don't I just like to prove people wrong! He also said I was only one of six people in the UK with this condition and he has only ever met twelve - isn't it great to be special?

I hope my positive news will give somebody out there the strength to keep fighting :yes:

Dee L

#2 Joelf


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Posted 27 February 2012 - 06:53 AM

Hi Dee,

Thanks so much for posting such a positive update; I'm so pleased that you're now feeling so much better and that your lung function is improved. :emoticon-congratulations:

It could be the Cyclophosphamide that improved your lung function; I also had a very good result after being treated with it, although it is a powerful drug to be treated with respect. However, whatever the reason it's wonderful that you've had such a good result from your treatment (with the added bonus of that weight loss ;) ) and of course you are special!!! :emoticons-yes:

I do hope that your assessment in March goes really well and you're able to start your cardiac rehabilitation with no further problems.

Best wishes,
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#3 Amanda Thorpe

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Posted 27 February 2012 - 07:38 AM

Hello Dee L

How fabulous that you recovered! In 2010 I was in serious heart failure because of myocardial fibrosis from scleroderma. My ejection fraction was down to 32% and normal is 55-60%. After having a bi ventricular implantable cardioverter defibrillator my ejection fraction went up to 35-40%, still puts me in heart failure but it's better that 32%! I remember well that awful, draining shortness of breath, even when talking. Everything was such an effort!

I have one trip to hospital whilst in serious heart failure and thankfully my troponin (Trop T) was negative, troponin appears in the blood after the heart has been damaged, for example after a heart attack so you had some damage at the time with a level of 300!

It is important that people know that you can come back from where you were so keep please stick around and keep telling them!

Take care and keep posting.
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