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Sunnysarah

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About Sunnysarah

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    Kent
  1. ILD post chemo and wasted muscles

    Hi Thank you for your replies Judy and Jo, the links have been helpful thanks if somewhat heavy going; but have got the gist; bottom line really is we are how we are and can't change things. I think really the most important thing is getting to know and recognise good days and bad days and in my case I wonder whether I should slow down sometimes.I carry on absolutely as normal, full-time work, housework, two boys 12 & 14, hubby self-employed - so his books etc etc ... am I dramatising or do you ever feel the lung damage makes you feel a bit tired sometimes? My FEV1/FVC are 55.8% and 58.9% - is this what I should be reading...although the lung function person said my un-damaged lungs are super healthy :)... I only really have trouble with stairs, hills and lots of exertion. Thanks again for your replies :) Sarah
  2. ILD post chemo and wasted muscles

    Hi all, hope you are all doing ok :) Just to update, I went to the Brompton couple of weeks ago had a lung function and saw specialist. My lung function has got better so that is really good news:) and my breathing is better than when I first posted but not as good as it feels funnily enough considering the lung function results. Anyway I am now on 1g mycophenolate and about to come off 5mg steroid. Specialist said worsening SOB probably interim between chemotherapy and mycophenolate. Will see how I get on without steroids, my next appointment is in January. I must say though now working full time in college I have never looked forward to a week off more, feel rather run down. Am not really certain how much impact reduction in lung function has on overall life, not 100% certain what all the stats about lung function actually mean either.. .if anyone has a little glossary that would be helpful thank you...just the important ones. Hope the waffle makes sense and is helpful to anyone in the same in between situation. Also saw local respiratory physiotherapist, she'd never heard of scleroderma...and really just showed me exercises on how to breathe from diaphragm...for when needed! Best wishes to all...keep warm:) Sarah
  3. ILD post chemo and wasted muscles

    Hi Jo, no probs....I don't think anyone would want to endure listening to me singing my heart out lol... Keep that to myself me thinks..:)... Am currently looking for a local yoga and or pilates class...like the idea of the whole ethos of yoga etc...just have to force myself to get into the swing of it though...bit of a shut the doors,close he curtains and snuggle in front of fire after work in the autumn/winter:) Best wishes Sarah
  4. ILD post chemo and wasted muscles

    Just to update anyone who may be interested; I saw local respiratory physio today, she has no knowledge of scleroderma and ILD but suggested that I practice breathing exercises from the duodenum, which I have never done as will help when I get extra breathless and helps 'keep the lower part of the lung clear from built up moisture etc'. I don't have any problems with this but it all sounds like sensible advice. I suggested Pilates/yoga to help and she thought that would be a good idea to help with the breathing and core muscles.....may help with my stooping. I was a little disappointed that she didn't offer more info understanding the disease from a physiological point of view but never mind. Spoke to Brompton about deterioration in breathing and they are bringing my appointment forward for another lung function and consultation...so good news there....such a super hospital :) Sarah
  5. Scared.. Men especially

    Hi Amanda, yes, I can't be worrying about what might happen...too much to focus on now, in a good way. :) Thanks for the offer of meeting, I will bear in mind. Best wishes Sarah
  6. Scared.. Men especially

    Hi J, afraid I am a female but just wanted to offer a little reassurance. All is not bad with this disease I have limited sclero with some hypomotility in oesophagus and am taking domperidone which definitely helps personally I always look on the bright side and can honestly say this disease, including lung disease, has never got me down. May have to take lots of tablets and make a few lifestyle adjustments but still have a very full and happy life. I know it may sound easy for me to say but try not to worry too much. Each case is different and try not to assume you have or will have the worse case scenario. What I would say though, like Jo has mentioned, you need to be very pro-active read up on everything to become knowledgeable about the disease and then follow up requesting appointments with the right consultants, don't forget you can request second opinions and can request specific hospitals. I did this and I see three different local consultants and then am also under the Brompton and Royal Free. I think you need to know what you want and then go for it. Locally my consultants didn't seem to have any real awareness of connecting all the symptoms and interest in treating them, apart from the gastroenterologist who is brilliant locally and sent me to Guys for ph and mamometric tests. Basically I have pursued the care that I need and expect. I hope this helps...try to keep positive....from my point of view things could be lots worse. Best wishes Sarah
  7. ILD post chemo and wasted muscles

    Hi Jo, thanks for the reply...mmm never been one for keeping fit...apart from walking the dog. :) But any incline or steps are pretty tiring and so over time muscle has declined. I have an appointment with respiratory physio onThursday to get the low down from a physiological point of view; just wondered what others had found or do to help with it. I'll post the outcome...may be useful. :) Hopefully the drugs will kick in soon and only a blip. I felt like I'd been given my youth back for a couple of months. Thanks again and I will check out the leaflets. Cheers Sarah
  8. Cyclophosphamide

    Hi, Just to let you know I had chemo December to June and worked through. I had it at end of week. And I agree, the worst symptoms were actually my last treatment. It was just like a chronic hangover, although each one varied in after effects. But nothing too unbearable. Took the train up and home on my own from Kent to London. So would suggest things may not be as bad as maybe you're expecting. :) Sarah
  9. Hi all, I have limited sclero with ILD, finished 6 months of chemo in June and started predisolone/mycophenolate about 6 weeks ago. I began to have more energy and less shortness of breath about 2 months into chemo and until a couple of weeks ago felt like I had a new lease on life...unfortunately I now feel almost like I was before chemo :( ... Is this usual before mmf kicks in?.. Also I have lost so much muscle and wonder does anyone have any tips of the best exercises or any other advice on which muscles to target I'm starting to walk with a stoop lol ...only 47. Apart from that all is good and I feel very upbeat and not at all dragged down by all this inconvenience of a disease :) ... Always glass half full.....thanks in advance for any replies. Sarah
  10. acid reflux

    Hi Chockers, I have limited sclero with interstitial lung disease (ILD). I've had acid reflux for years. It was my first symptom apart from Raynaud's. Anyway following recent endoscopy check-up my consultant notice that my oesophagus is scarred and so the walls of it and muscles don't move food own promptly as it should. I'm now on domperidone, which really helps. Maybe you should ask for a check-up with your gastroenterologist and have it checked out? Hope this is of help. Sarah
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