I'm new here ...

[Gayfere]

Hi. I suddenly developed SOB in Jan 2016 having never had any breathing problems before in my life, never smoked, never worked with chemicals, never had a chest infection or any other logical cause. Following 3 months of investigations including CT scans, LFTs, bronchoscopy, blood tests, xrays etc, I was diagnosed in July with Bronchiolitis Obliterans. Everyone has been very kind and very supportive and I cannot fault the medical care I have had. Following an extremely bad chest infection in August when I had to be hospitalised, my breathing is even worse. I did a pulmonary rehab course but it didn't really help as I was too breathless to do any of the exercises!!! I have had to resort to a wheelchair and mobility scooter as I cannot walk very far at all without getting extremely uncomfortable from the SOB (apart from being excessively short of breath, get severe rib pain, I feel sick and also feel I am going to lose control of bladder and bowel). I did a 6 minute walking test but only managed 4.5 mins before the nurse stopped me as she felt I was suffering too much. My O2 levels only dropped to 92 though so I don't yet qualify for oxygen therapy. I am currently on 10mg prednisolone, uniphyllin, Tiotropium and Fostair inhalers and take azithromycin 3 times a week to try to prevent further infections. I have recently started feeling very down. I am no longer the person I used to be as I can't do the things I used to. I could never sit still before now I have to sit all the time. I used to always be doing things for other people now I can't help them at all and am the one receiving help. I loved dancing, walking, pilates etc now I can't do any of these. I have tried really hard to do as much for myself as I can but I get so very very tired. I now take an hour to have a bath as I have to stop once I get in the bath to get my breath back, wash a little then rest again, rest again when I get out of the bath before drying off etc etc. I have bought a towelling robe as I saw somewhere that that makes drying easier but I still have to do things in extremely short bursts. I don't seem to be able to move slow enough to do anything without it causing a problem. I have an extremely supportive family, friends and church but I just don't seem to be able to accept this new me. I know my condition is quite rare but if any of you can offer any help or suggestions I would be extremely grateful. I am just very scared of the future and don't much like the present! Thanks for taking the time to read this.

[newlands]

I'm so very sorry to hear of you struggling so much ,you will get plenty of help on here

Take care

Dorothy

[Gayfere in reply to newlands]

Thank you Dorothy

[casper99]

Hi Gayfere and welcome to the forum.

I'm not surprised you are feeling so down. To suddenly go from being fit and healthy to being practically unable to do anything, is bound to have an effect on your emotional wellbeing.

I don't have your lung disease but, I'm sure someone on here will be along soon that does.

A visit to your docter, to see if he can help your low mood. A lot of us, including myself, have had to get help for the understandable depression that comes with life changing diagnoses.

Meanwhile, keep coming on here, we all feel carp from time to time and talking it over with someone, is much better than struggling on our own.

I hope you get a reply off others with your condition because, knowing you're not alone, really helps to ease the feelings of despair. xx

[Gayfere in reply to casper99]

Thank you for your support - I appreciate it.

[Dedalus]

Welcome to the group Gayfere x

[Gayfere in reply to Dedalus]

Thank you.

[Woodycat42]

Welcome Gayfere

I know exactly know how you feel I went from being an active full time nursery deputy to being in a wheel chair on oxygen 24/7 and unable to achieve a lot. I have scleroderma and lung fibrosis diagnosed last February and was a really big shock. I had just buried my mum at that time who passed away with pneumonia after suffering lung issues for years.

I just went into why me why me what have I done to deserve all this.

Your life completely changes while everyone else goes about their normal lives. We have to follow a path that just gets us through each day as best we can . Sending strength no hugs your way x

[Gayfere in reply to Woodycat42]

Thanks Woodycat. I'm sorry to hear about your Mum. I lost my Dad in March last year and it was when I was so breathless as I tried to do the tribute at his funeral, that I realised there was something seriously wrong. Everyone put it down to the emotion and stress if the time, but I knew it was more than that. Thanks for your support - I am trying to just live one day at a time but this wretched breathlessness keeps coming back to remind me of all the things I can't do! I see the consultant again next week, so maybe there will be something he can say that will help me be more positive. x

[Lynnelovessunshine]

I believe I have the same as you but mine is referred to as Obliterative Bronchilitis. Whatever the name, the disease is awful, frustrating and debilitating. Mine is linked to Rheumatoid Arthritis!

I have gone from being an active 48 year old primary school teacher with a passion for sport to a person who is always having to sit down because I am constantly breathless when I exert myself! I also regularly shake inside and I totally understand your anxiety. I went through a phase of almost living on the toilet as I needed it so often!!! I don't like my illness but I am learning to live with it and my new normal.

Apart from teaching PE, the irony!!! I am now back at school full time, teaching all subjects. It is hard and some days are better than others but I try to smile and take strength from those who love me.

I've only been on this site a week or so but so far I have found everybody to be very supportive. I hope you find it supportive too.

Lynne xx

[Gayfere in reply to Lynnelovessunshine]

Thanks Lynne. Although I feel sorry for you, it's nice to hear from someone else who has OB. It sounds as if you have supportive friends and family too. I feel so awful when I am struggling for breath, for them as they feel so helpless not being able to do anything to help. Well done for being able to get back to work. Fortunately I am past retirement age so didn't have to cope with that too! You are right people are very supportive on here and hopefully I may get some ideas as to how I can cope better. Thanks again xx

[Ccupcakes in reply to Lynnelovessunshine]

Well done for getting back to work Lynnelovessunshine, how are you doing?