Hi guys
Last week for 8 days i was hospitalised over my oxygen levels - I found I had a chest infection on top of my ILD that lowered it from my base rate of 88-92 to 66
When I had it checked at A& E it was still 66 so I was admitted immediately
Now I find I have another condition a s a result of a heart scan I had on the Tuesday - Pulmonary Hypertension -this can only be treated in Sheffield because theres no local special facilites available
It was either there or London-well I would refuse point blank & put my foot down if I had to go to London
When my specialist came in to see me she mentioned this & asked me to think about it -the enxt day an ordinary hospital medical doctor suddenly came marching into my room & said hes referred me -so im bloomin cross -I told him my specialist told me I could think about it & let her know
Im on a strong antibiotic that ive gotta take indefintely 250mg 3 times a week on a monday wendesday & a friday so Ive had my GP get it added to my repeat prescription so they better get it right next month
Ive got a new set of oxygen machines now that have got a dial of 4 on it & when Im moving around Ive got to set it at 4 - if im at rest ive fot to have it on 3
For the 1st few days Im going to stay on it full time so as not to shock my lungs - then send an hour on an hour off so i can get back into my routine into 8 hours off it & 16 hours on it
Im furious because I was doing ok on my other oxygen machines
Decreasing supplemental oxygen…
New to inogen five oxygen concentrator
”Dear, oh dear,” as the king said. You are having a dreadful time. So sorry to read your story. Is the referral to the PVDU going to be Sheffield or London? It does sound as if you need to seen by the super specialists at these units. And difficult about the change to your oxygen equipment.
Being nosy I am curious about your ILD. Did it have a cause?
All the best
Kate xx
In my case its scarring of the lungs -its not due to smoking because I dont smoke -this is why I find it depressing & its broken me because if I was a heavy smoker & this happened then it would be consequence & my fault but it isnt it causes me to cough/24/7
what lowered my oxygen levels this time was a chest infection - I really didnt wanna go to hospital but dad came round & sat watching me until I cracked -At first when I moved he went to the car thinking I was going to get in the car so I wasnt having him do that I went to bed for a bit & warned him if he didnt get lost i was goign to call the police on a charge of harrassment which is what he was doing so in the end I just got up *& went
The pulmonary hypertension is asociated with ILD .