New member says Hello.

[wheezyof]

Hello All, I'm new here. I have bronchiolitis obliterans and bronchiectasis. I'm nearly 66 a granny to 6 and great granny to 2. I live in Hampshire. I enjoy fair weather gardening (no digging or lifting), reading, scrabble (on facebook) and knitting. I'm not enjoying the cold weather as it hurts my chest. I go to our local Breathe Easy group once a month where I have met some lovely people.

[Pentreath Volunteer]

Welcome to our friendly site wheezyof! Good for you in keeping gardening, a lovely way to get some exercise.

[Hidden]

Hi wheezyof, welcome to the family. I too have Bronchiectasis. 67, with 5 children and 7 grandchildren. I heard that we are having the coldest February for a long time, I thought it was me feeling the cold more than usual.

[sassy59]

Welcome wheezyof, hope you enjoy the forum. The better weather will soon be here so you can get out into the garden again.

I am carer for hubby Pete and we are in West Sussex. Xxxxx

[wheezyof in reply to sassy59]

My husband does a lot for me. He had a heart operation a year ago himself. He does most of the cleaning so I get less exposure to dust. I find the level of activity need to clean is beyond me.

I hope you and your husband are as well as you can be.

[sassy59 in reply to wheezyof]

We’re not too bad thank you and your husband is a star. Take care xxxx

[Grammyluvs]

Welcome. I live in the states and I'm 74. I have Bronchieactesis and asthma. I use Spireva and Advair 500/50 inhalers and my nebuliser is albiterol and a saline treatment with an Acapella device. So far so good. I also attended Pulmonary rehab.

[wheezyof in reply to Grammyluvs]

I found pulmonary rehab useful. I have 3 inhalers and take antibiotics,. I've met other people who use a saline treatment. Do you think it works? I'm thinking of asking the consultant if he thinks it would help me to try it.

[Grammyluvs in reply to wheezyof]

Yes, especially if you have a flutter device (acapella) and do the huff breathing afterwards. I don’t use the flutter unless I am having problems. This regimen has worked really well for me. I hope you find a regimen that will give you stability. It makes all the difference

[Katinka46]

Welcome to this forum. I always keep an eye out for fellow Bronchiolitis Obliterans people. (I prefer Obliterative Bronchiolitis as I'd rather have OB than BO.) Welcome to the Zebra (rare diseases) club. May I ask what caused it? And how was it diagnosed? My dx took forever. In fact only just confirmed before Christmas when I knew it had been brewing, as it were, for eight years. There are a few here with it and as I think I am the oldest I feel like a mother hen and am fiercely protective of my chicks.

Do tell us your story, we all love other people's tales.

All the best

K x

[wheezyof in reply to Katinka46]

I've never heard of the Zebra club and wasn't aware that OB was rare. I became ill nearly 4 years ago after being prescribed oral steroids for painful joints. Within a few weeks of starting the steroids I developed a severe chest infection. From then on it was all downhill. One infection followed another. After a year I was diagnosed with bronchiectasis. I didn't respond very well to treatment and lost a whole litre of lung capacity in less than a year. A high resolution scan later I was informed, last year, that I had OB as well.

I've never smoked or worked with very dangerous chemicals.

How did you get OB?

[ledge in reply to Katinka46]

Hi Katinka, sorry to hear that you have OB too. I have been diagnosed with this, and like Wheezyof never smoked or had as far as I now worked with any dangerous chemicals. so there you are another member for your club

[Caspiana in reply to ledge]

Hello ledge . Welcome to the Zebra club. So you OB is idiopathic? So nice to meet you. xx 😊

[ledge in reply to Caspiana]

Hi Caspina.... I honestly dont know, I haven't been given any information other than I have it, it arrived on my doorstep quite suddenly from previously being very fit. This was three years ago. My FEV1is ridiculously low. I also now have lung nodules, and bronchiectasis to add insult to injury. My consultant, sadly is so busy, that I am to be only reviewed by telephone if my next ct scan shows no change. I really dont know what questions to ask, or how best to look after myself. I try to exercise at least three times a week, yoga, pilates, a gentle weights and aerobic class, and water aerobics. Other than that, its just my inhalers, and get on with it.

[Caspiana in reply to ledge]

Hello ledge . 😊🌹

What is your current FEV1? Are you on oxygen?

[ledge in reply to Caspiana]

Hi Caspiana... no I am not on oxygen. my sats are lovely at 97 or so until I start to exercise. My current FEV1 is 0.87 and its been like that since I was diagnosed. or around that mark give or take a few up or downs on the end number. I know nothing about this disease as it appears to have come out of nowhere, with none of the pre conditions of its arrival applying.

[Caspiana in reply to ledge]

Hello ledge . When you do start to exercise , how low does your oxygen drop? If it's below the 90s you may need ambulatory oxygen. Sorry for the questions. xx 🍀

[wheezyof in reply to ledge]

Hello Ledge, I'm lacking information too! I have a very informative booklet about bronchiectasis fro BLF but nothing about OB. I looked on the internet but it wasn't helpful. Just confirmed what I'd been told on here that it's rare. Then some confusing information about what OB is. I'm due to see my consultant at the hospital this week (if the snow clears). If he tells me anything useful I'll share it here.

[ledge in reply to wheezyof]

thanks Wheezyof.... I dont get much feed back from either my gp or from my consultant, so anything you can glean will be useful, especially as like you, it came out of nowhere. You dont have rheumatoid arthritis as well do you? I dont, but from what I gather if you do, OB can be a side effect of that. Like there isnt enough to worry about! Enjoy the weather.

[ledge in reply to wheezyof]

Hi Wheezyof - did you get any information from your consultant? I am still none the wiser. I had a CT scan two months ago, and I still haven't had the results. My consultant said he would call me, but I have heard nothing. But on the premise that if there was something sinister to report, I would have known by now. My consultant because I'm basically not treatable ( or so it seems) steroid non-reversible was his terms. has rather left me too it - but as I have touch wood had a flare up - I have not contacted my GP either. However, I do feel a bit abandoned.

[wheezyof in reply to ledge]

No. The consultant is a lovely gentle man but getting information from him is difficult. He'd make a great politician - never a straight answer. Never mind I can always ask the respiratory nurse/gp/lung function team when I see them.

[Caspiana in reply to Katinka46]

I like that Kate. OB instead of BO. I am proud to be a member of the Zebra club. xx 💓

[cofdrop-UK]

Hi wheezyof and a very warm welcome to you, though sorry to hear of your health issues. I used to live in Hampshire - Farnborough then Basingstoke. Back home in sunny Yorkshire now (not so sunny at present).

Cx

[wheezyof in reply to cofdrop-UK]

Hello Cofdrop, Here's a coincidence, I live in Basingstoke but visit ny sister in Bridlington! What part of Yorkshire are you living in?

[cofdrop-UK in reply to wheezyof]

I live in Leeds. Used to live on Penrith Road. Ah the lovely east coast

Cx

[wheezyof in reply to cofdrop-UK]

I'm on Popley. I used to go to Brid by coach so have had many comfort breaks in Leeds bus station.

[ledge]

Hi Wheezyof... and Katinka 46 it looks like you and I are in the same Zebra club too. As I have exactly the same conditions of OB and bronchiectasis- even got the diagnosis of asthma too.

Like you I haven't the foggiest of where it came from as I have never smoked, or working with dangerous chemicals. Also like you, it came out of nowhere - 3 years ago to be precise, I think a really bad chest infection precipitated it but can't be sure. However, I have lost a huge amount of lung capacity very very quickly. I don't know how much, as I never had the need to find out as I was previously very fit and exercising 5 times a week. but now my FEV1 is 0.88.

Although difficult breathing wise, I still try to exercise at least three times a week, yoga, a gentle aerobics and strength class, pilates, and a gentle water aerobics.

It has been thought that my severe reflux has been the cause of the problems and I have written in a previous post how I have been offered fundoplication to help relieve the reflux - however, because of my poor lung capacity, it is considered very risky to administer any general anaesthetic- Sadly I don't seem to get much support from my respiratory team consultant - not that I expect to see one on a weekly basis - in fact I only see the respiratory team once a year. but that seems to be a plug that's going to be pulled. As I was told that I was being signed off after my next CT scan and I would get the results by a virtual clinic... ie a phone call. Should I need to go back to see them, I go to see my GP and get put on the list again. Currently, I am taking Spiloto and Relvar. with antibiotics and steroids as and when.

I hope you can get out in the garden soon, but in the meantime, enjoy the bright sunny days and even the snow ( from the comfort of your armchair!) Seed and plant catalogues are a wonderful distraction, and also get us to think of the next coming season and what we shall see and do.

[wheezyof in reply to ledge]

I'm sorry to hear you are not getting much support. Until recently I had a lovely, caring GP but now she has retired. I see the consultant every 6 months and will be seeing the respiratory nurse yearly. Until I got ill I worked as a learning support assistant, in a main stream school, for a child with additional needs. A job you need to be healthy to do.

[Dedalus]

Hello and welcome x

[Caspiana]

Hello wheezyof . Welcome 😊 to the forum. I am also a Bronchiolitis Obliterans patient. Nice to have you here.

Warm wishes,

Cas xx 🍓🌿

[wheezyof]

Thank you. Do many people have Bronchiolitis obliterans?

[Caspiana in reply to wheezyof]

No, it's very rare and not well understood. Through my three year search I have found five people who have it. 🌿

[wheezyof in reply to Caspiana]

Well I don't mind being different or considered rare but I'd rather be a rare beauty or have a rare talent than a rare disease. Oh well! I'll just have to grin and bare it. I did tell my consultant that I didn't like having lung disease and would like to swap it for something else ...

[Caspiana in reply to wheezyof]

Hahaha. I am with you on that one wheezyof . I suppose for some reason or another we are given these burdens, it's how we carry them that's important. All of us do our best. xx 🐞

[Hidden]

Welcome. Lots of friends on here to talk to who understand how we all feel. Take care, keep warm.

[roscoe600]

Cold weather coming not my favorite.last year l caught double pneumonia and spent 17 days in hospital

[wheezyof in reply to roscoe600]

Ooh not good.

I've been cosseting myself in the hopes of avoiding infections and flare ups. I had the pneumonia jab a few winters back, get my yearly flu jab too.

No person crosses our doorway if they are unwell! Even a slight cold and they are sent packing. Actually friends and family are good about staying away if unwell but a meter reader must have thought me strange when I made him wait outside and read the meter myself.

I use cold and flu block cream when I go out and anti bacterial hand gel frequently when out.

This all sounds extreme but I just don't want to get any more ill than I am xx