ILD/ PULMONARY HYPERTENSION

[Sara_2611]

Hi I'm Sara from ManchesterI was diagnosed with ILD in 2019 which has left me absolutely breathless making the slightest movement

I spend my days attached to my oxygen concentrator attached to 3 metres of tubing wire

I've got no outside life because my small ambulatory oxygen lasts only half an hour whereas the medium sized I also order are only 45 mins long - so going on long drives out with my family is impossible.

My oxygen SATS regularly go dangerously low & my specialist told me it's a feature of it

I'm in hospital AGAIN for the 14th TIME over my oxygen levels & this is the 2nd time there's also been an infection. In resuss they had a battle to keep my oxygen level stable because of the infection One minute it was within my range of 98-92 % the next it was I'm in the low 80s & sometimes 70s changing the mask twice

I had to have a procedure done in Sheffield earlier this year via my jugular to look at my heart & found a ventricle had enlargened , & got special medication from there. Also using Nintedanib from Wythenshswe hospital to stop the progression

I've got a long transplant assessment in October which I think I ll fail because of my BMI & probably many other things too

[Kiki3233]

Hi Sara, just read your message and really hoping your October transplant assessment will be positive. Sending you love and positive vibes, stay strong.Christian

[Hazel-mary]

Hi Sara

I have just read your post , I hope your transplant assessment was successful. I am being referred for an assessment and would be very interested in hear how you got on

I was diagnosed with pulmonary fibrosis 18 months ago and am taking pirfenidone to hopefully slow the progression.

Would love to hear how you are

Take care

Hazel x