Hi everyone
My name is sara brown.I joined this community a long time ago because I was diagnosed with ILD in 2019 but havent posted for years so I thought Id better re-introduce myself
A lot has happened to me -I have been put on Oxygen 24/7 at home which does limit my going out for example shopping -I am on 10 litres moving about & 8 litres at rest which also applies to my ambulatory.The oxygen uses up so quickly we end up having to change it whilst out & about even though I take medium ambulatory tanks
My oxygen base rate is 88 -92% -so this is why its so taxing to do the simplest thing i experience extreme tiredness -I compare this to a marathon runner who has just run 26 miles
I have been hospitalised 16 times over the dangerous lowering of my oxygen levels -the first time (I think it was the 1st time) when I was on 4 litres moving about & 3 litres & if possible 2 when at rest during the night I could literally hear my heart beating & my levels dropped to 40 , various times times in other admissions its been 60s or 50s
Ive been kept in for about 10 days on each admission
Im on Mycophenalate x 2 500mg twice a day & Ninetedanib 150 mg x1 twice a day-this is to down the slow progression of the lung disease (this had to be prescribed through Wythenshawe Hospital & not through my specialist at North Manchester General Hospital where I ususally go
Recently I persuaded my specialist to consider me for an assessment for a lung transplant -took me ages but eventually relented. The first letter I got for my assessment appointment -I immediately booked an ambulance to take me to Wythenshawe hospital (way in advance) -where the specialists are, & told them Im on oxygen so could they provide one with oxygen
On the first time the ambulance service (not the big main ones) -I think it referred to the community ambulance) -we had a phone call from them saying they couldnt provide one with oxygen which forced us to cancel the appointment so my mum complained
When I received a second appointment I then booked another ambulance way in advance (my mum had complained to the ambulance service & they said they would send a main ambulance where as standard -oxygen is available (of course they cant tie themselves to a time we mentioned the time my appointment & they said theyd try to get one before my appointment time .This went & gone & the hospital phoned & cancelled the appointment because I hadnt turned up despite me telling them we d ordered an ambulance because Im on oxygen & it hasnt turned up
This was the SECOND TIME this had happened, so once again my mum complained to all the relevant people including PALS - the section that deals with North West Ambulance Service (actually my mum had the direct name & direct email) & including my specialist via her secretary.
me & my family now distrust the NWAS & when I get another appointment -explore other ways I can get to my appointment safely -I have an emergency oxygen tank which apparently lasts for about 7 hours (i really am skeptical because of the high dosage of oxygen Im on)
I have blood tests every 3 months to see how im getting on with all my medication & while ive been in hospital they did blood gas tests via my wrists which as brutal & painful -so I said the only way I will have it done is in my ear (which they do at the Oxygen Service which is in Oldham near where I live)-I live in Middleton North Manchester & put this to my specialist & a couple of times whilst in hospital I managed to have it done in my ear .Now according to her -doctors who are authorised are being shown how to do it in hospital-so I think Ive started a sort of chain reaction there
Because I cant walk very far because of the extreme tiredness & my ILD & my newly diagnosed Pulmonary Hypotension which Ive had a procedure done I am now reduced to walking with a walking frame , I have a stairlift to get me upstairs & downstairs
Every single thing subjects me to extreme tiredness -just walking a couple of steps to the window, to turn down my oxygen concentrator which is just in front of me thats only 1 step , getting up to throw something in the bin (thats just the lounge)
Because its dangerous to have my cooker on whilst attached to my oxygen on my mum comes down & cooks my meals , she comes every morning to get me up & wash me & get me dressed /undressed because thats too taxing on my lungs too
Mum& dad both do my shopping as well & mum makes my lunch too because its too taxing on my lungs to do it myself moving about in the kitchen (thats not me being lazy) it truthfully does because when it comes to getting it out of the fridge when mums not there i have to get my breath back before I even eat -even experience tiredness all though I have my concentrator turned up to 10 litres
I have even requested that my doctors appointments be conducted at home rather than going to the surgery -as I put a water tight case -reasons why & now classed as housebound
Only time I go out is when I have hospital appointments where its impossible to have these appointments at home
Even when I went to the dentist during the summer -I told them I was on oxygen & asked if they had oxygen on their premises & told them i had ambulatory & how long it lasted asked could I be hooked up to theirs& they refused point blank citing that its only for people who pass out
I had to change the tank when I got to the dentist because it took about 20 mins-30 mins to get there & changed it again before I went in & even after the appointment which was only a 3 minute check up I had to change it then to go home (by car with mum & dad)
So my life isnt very much -Im effectively on permanent self lockdown because of being attached to my concentrator 24/7 & the lack of lasting of my ambulatory
All of my activities I used to have have "gone up in smoke" I had to make the heavy heart & devastating decision to give up my horseriding which Id been doing for 40 years, used to go to the gym, swim with my mum every tuesday
Now I cant do anything -I have no activities at all -except to reducing myself to doing colouring in a colouring book which as far as Im aware is only done by children
My only link to horseriding memories is I saw on ebay a toy horse from my childhood & its rider so I bought that along with some outfits that came with it & just put its saddle & bridle on it & sat the rider on it & stood it on the other side of my couch so I could look at it from time to time & buy some more of its outfits that it had
Thanks
sara brown
