Hi I am new to the forum after reading through a few of your stories I thought I would introduce myself and share mine. I am a 40 year old mum of twin girls and in 2008 was diagnosed with polymyositis a connective tissue disease where your immune system attacks you I have managed to hold down full time work until 2017 when I noticed even the smallest distance or something as simple as hanging washing out left me breathless a trip to the dr's and a chest X ray confirmed my worst fears it had spread to my lungs resulting in interstitial lung disease I was referred for chemotherapy cyclophosphamide then in January this year after collapsing in the shower I was told I had sepsis influenza b and pneumonia and after having multiple organ failure spent 4 weeks in hospital 2 of those in intensive care I have only just been able to restart chemo after finding out cyclophosphamide has been unsuccessful I am trying mycophenalate a recent chest X ray has shown further damage I am very lucky to have a supportive partner and good family to help me through its a terrible disease that nobody really understands
Interstitial lung disease and polymyo... - Lung Conditions C...
Interstitial lung disease and polymyositis
Hello Twinsmum10, welcome to our very friendly and supportive group. I'm sorry to hear you've had such a tough time. I had Cyclophosphamide as part of my chemo for Breast Cancer. I also have RA, OA, Osteoporosis, Vasculitis, Bronchiectasis and a couple of other bis and bobs. Best wishes. XXX
Thankyou xx
You are just greedy having all those things x
I know. I'll share them with you if you like. 
That sounds terrible Twinsmum and it’s great that you have love and support from family.
Welcome to you, I wish you well. Xxxx
Thankyou xx
My word you've had an awful time so far this year Twinsmum10 . I'm glad you've decided to join us and I very much hope that mycophenalate has good results. I'm so glad you've such a good partner and family around you. Very best wishes, Sheila xx
Thankyou xx
Hi. Twinsmum welcome. I'm fairly new too about 6 months they are very supportive friendly and helpful no matter how small the question . I had t give up work last year. My hubby realised I needed help even to just get dressed I have copd and just been diagnosed with osteoarthritis so doc put me on double vitamin D tablets. Never thought I would have to have vitamin D tabs spent all my time in the garden with the children in the sunshine ( I was a child minder for 28 years) so never thought about it. Nut it does happen. Sorry talking to much problem of being an early bird always up early.welcome
Welcome to the forum. My heart goes out to you. What a terrible time you having. And how worrying for you all. I am glad you have support from your family. That is huge. How old are the twins?
This is a very supportive group. I haven’t heard of your condition.
Love and hugs
Kate xxx
Thankyou katinka46 my girls are 8 it has been a worrying time for us but I remain positive and am grateful for what I can still do .My condition is rare which is why they are finding it hard to treat it's all a bit trial and error
Welcome Twinsmum, So sorry to read your diagnosis and Treatments. You must have been so poorly, But you have got through that awful Bit and now Come to us, we can't Cure you, But we can Listen, advise, Give Cyber Hugs and Blow Kisses to you and your lovely family. Love n Hugs , Carolina XXXXX
How lovely and kind of you thankyou xxx
Hi Twinsmum, I also have interstitial lung disease. I was diagnosed last year and have had to make quite a few changes to my lifestyle. I understand how hard things must get especially with two 8 year olds. Fortunately for me I'm a grandma now so get to hand the children back when I've had enough! I find that I have to plan ahead a lot of the time so if I want to do something that will tire me out I can have a rest day the following day. I had the cyclophos last year and it seems to have helped. I'm still on low dose Prednisilone but when I go back in six months time I may be changing to myclophenate. I'm still working but just 4 days a week but even that can be a struggle. Anyway welcome to the forum. I dip in and out most weeks as you say we are still a bit of a rare breed but I think that makes us special! There are some lovely people on this forum with amazing stories to tell. All the best
Hi Judith Thankyou for sharing your story with me it is unfortunate that we seem to share a similar illness and treatment it's good that you are able to plan ahead and continue to work since been admitted into hospital earlier this year I came home on 24/7 oxygen and have had to give up work I am joining pulmonary rehabilitation in September and see my consultant in 4 months to discuss if the mycophenalate has been beneficial I wish you all the very best xx
What a touch time you've been having. Hope things improve for you now. I'm sure you'll find lots of support on this friendly site. All the best.
Thankyou xx
A very warm welcome to you Twinsmum. I am sorry to hear you have had and are still having such a struggle with health issues.
I hope you will find lots of support here and I am so glad you have a very supportive family and two wonderful little daughters. Eight is a lovely age.
Look forward to your future posts.
Cx
Thankyou xx
Hello and welcome Twinsmum10, it sounds like you're an incredibly strong and determined person to have coped with so much and stayed working full time up till so recently. I'm afraid I don't know about your condition but I've a young family too and I know how difficult it can be to manage health conditions and family life.
You'll find a wealth of supportive and knowledgeable people on here, so do stick around and get to know everyone 😊. xx
Thankyou xx
Hi and welcome! Your condition being so rare,certainly makes you a very,very special lady indeed. I see that JudithC has been through similar wars and this forum may unite you with others. In any event,you will fit in just fine....we joke,rant,complain,moan,advise and lots more. Glad you are on board!
Thankyou xx
Wow, I'm so sorry for your illness. I will pray for you . If I can give you comfort in any way please let me try...
Gods Blesdings to you and your family
Hi, I hope you don’t mind my contacting you. I was diagnosed with interstitial lung disease 7 years ago. (Chronic hypersensitivity pneumonitis and fibrosis). Treated with cychlophospamide etc.
Have been taking mychophenalate and steroids ever since and until last autumn my condition was stable and I was able to cope with oxygen levels at 94%.
Now they are 90% at rest and drop to 74% with a short walk. I have started oxygen and had an initial assessment at the QE on Tuesday for transplant. ( I saw your post saying you were on active list). When Covid restrictions lifted I will go in for my 3-4 day inpatient assessment. I have no idea what this will involve.
I hope you get back on active list soon. Consultant said he hoped they would be up and running soon.
Hello Mary. 👋 Sorry Twinsmum10 for butting in. I had my transplant last summer. Don't worry too much about the assessment. But bear in mind they want to know that you are fully committed and ready to undergo the gruelling time ahead. It is not an easy road. If you are interested there is Facebook group for pre transplant and post transplant patients. I learnt a lot there before my transplant . Sometimes it is not pleasant but I knew the process and about all the meds, side effects and post transplant issues before I went in. And it helped me a lot. It is an mostly American group but there are some people from the U.K. there. Just a thought. Have a good weekend.
Cas xx 🙋
Hi Mary your story sounds very similar to mine
I am oxygen dependent and was assessed for transplant at The QE in September last year and accepted onto the list in November
The tests are nothing to worry about most of them are just what you would normally have as a day patient..CT scan chest x-ray lung function tests blood tests walk tests and then I had a lower abdomen scan and heart catheter and 24 hour urine test all the nurses and the staff on the ward are really lovely .
I am taking mycophenalate and steroids and managing to stay reasonably stable
I am not due another tracker assessment now till August my last assessment was done over the phone fingers crossed assessments and transplants can be reconsidered soon
I hope you get the call for your assessment soon let me know how you get on .
Take Care x
Hi, I’ve just completed my 4 day assessment and am waiting for the outcome of the MDM which is happening this morning. The QE have been great. They are back doing transplants.
That's great news fingers crossed for you..I was called back into clinic last month and put back on the list
Just heard I will be going on the active list!
Well done good luck
Thank you for replying, there doesn’t seem to be that many people with this auto immune lung thing. I will let you know when I get to have assessment. It does sound as if we have a similar experience. When were you first diagnosed?
I was diagnosed with lung disease in 2017 which was caused by polymyositis..then in 2019 I was diagnosed with pulmonary hypertension which was caused by the lung disease..I have just received a letter from the Q E showing the increased risk of covid during and after transplantation and asking if I still wanted to stay on the active list as they were slowly going to try and get up and running again so hopefully you will get your assessment soon x
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