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
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horseygirl_0103
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”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?
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 .
So sorry to hear all you've been going through and have to contend with. Hoping the changes in treatment and the new referral will help you feel a bit better soon.
Yes lets hope so - a ver very last resort & scaping the bottom of the barrel so to speak would ahve to be a transplant Ive done lots of research on this but I was also told id probably need counselling so I told her we ll cross that bridge it it comes to it
Sorry you are going through all this. Why don't medical people listen to us? They still seem to be living in the past when the doctor was god. Hope you start getting better soon, with or without your doctor's help. xxxx
ILD will never go away lung disease is for life so is pulmnary rehab -I ll be ill for the rest of my life until my body starts to shut down & I finally die of it
Oh god i hope it ll be a longer stay at home The company who supplied the oxygen tanks made a special delivery of nasal canulas because i wwas concerned that one of them was leaking oxygen
I can only send you my best wishes and hope life doesn't keep throwing extra complications at you. What the other, wise ladies on this forum say about Sheffield sounds quite positive. xxx
Hope your feeling much better soon. Yes a chest infection on top of already dodgy lungs is going to send your oxygen levels plummeting. All being well as soon as you recover from chest infection you can return to normal oxygen regime.
Seems like they are thinking the best ways to treat you, by permanent antibiotic treatment, which some of the other members here do. As well as looking at specialist medical centres. I appreciate your concerns about going so far from home but if there are only 2 hospital options then not much you can do. I would be asking how it was envisaged to travel to/from these hospitals and see what they say! I wouldn’t have those public transport would be viable so would expectation be parents or other family/friends transport you? Think details need to be factored in to equation.
when I had my appoiunment with my specialist -trhis is one of the questions we put to her as travelling with mum & dad alpone could be a bit risky as my ambulatory oxygen is only half an hour long
She told me they will arrange a special type of travelling ambualnce (I think she meant the NHS ambulances that they drive round in when someone cant go home of their own accord -Ive been in one) -which has an oxygen tank in it so I can have continuous oxygen
I want mum & dad to come with me so I might persuade mum to travel in the ambulance with me so Ive got someone I know with me
Id rather go to Sheffield rather than London there was NO WAY was I gonna go to London -thats too far no matter what
I have pulmonary hypertension and am under Sheffield. Takes me a couple of hours to get there. You will need a right heart catheter to confirm diagnosis. Only true way to diagnose. Insist on being sent there if it is closer. Staff are amazing. All the best, it is a life limiting illness that takes some getting your head around. I’m on 15litres of oxygen 24/7. Only diagnosed 18 months ago.
There was something mentioned about a catheter I think -in th e worst part of the body -the groin under local anthesthetic I thinks he said people could be sedated - provided that was safe for me & nort make me have a fit -something I might opt for
Ive got to wait until there is confirmation for a place
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