Re introduction ILD

[Sara_2611]

Hi everyone

My name is Sara sorry ive been away for so long Ive been in & out of hosputal over the dangerous drop of my oxygen levels This is my 11the stay

I was diagmosed with ILD in 2019 ive now got pulmonary hypertension as well which was diagnosed recently.

When my levels went down at home which they always do during a flare up im puffing & panting.

Puffing & panting is affecting my ability to eat & cant eat much

especially when the food is horrible it doesnt help

Im puffing & panting as i message you now. I just had my obs done & it was 83 (base lune 88-92) but then it started to go up

I had a procrdure done in sheffield because one of the ventricles in my heart has enlarged so they ve given me 4 months of sildenafil by the doctor there which is supposed to open up the veins to allow blood to get to the heart

[Musicalways]

Sara so sorry to hear your going through all of this. Keep strong. Let's hope your Sat's improve as your at the right place getting treatment. Sending viral hugs 🧡🤗

[horseygirl_0103 in reply to Musicalways]

Thank you kindly I have had to accept that this will always happen until I finally die of it because this is a feature of it

[Kiki3233]

Just wanted to send you all my love hoping you are are starting to feel better now with the sildenafil.

[horseygirl_0103 in reply to Kiki3233]

Hi Thanks very much

Im afraid the sildenafil wasnt comptible with me -One of the side effects was nasal congestion - & one morning I woke up not being able to breathe -so I put it down to that & phoned the doctor at sheffield -& explained what happened & that when I was told by the doctor who prescribed it it wasnt for everyone when I was there 0I told him I was no longer prepared to continue it & could they recommend something else to treat the pulmonary hypertension

They came up with another one called Tadalafil & amongst other side effects -THAT one has nasal congestion too

So I explained I'll give that a try for a while & if I do get nasal congestion & go through what I went through with the sildenafil Im going to contact them & let them know that this has happened (as they advised) & not continue with that either & ask them to try something else that doesnt have a side effect of nasal congestion as I dont want to go through that a 3rd time

[Kiki3233]

Hi Sara, I hope they find something suitable for you, let us know how it goes please. All the best

[horseygirl_0103 in reply to Kiki3233]

Thanks so do i - ive started taking it now do im going to give it a week maybe a fortnight - if im getting this nasal congestion i ll be on the phone to them

I wil definitely update you

[Kiki3233 in reply to horseygirl_0103]

Hey, was just checking my news feed and was wondering how you were doing. Hope things have improved.