Last week I spent nearly 8 days in hospital YET AGAIN over my oxygen levels This time it was due to a chest infection which dangerously lowered my oxygen levels from its base line of 88-92 to 66
When I got to hospital after a long wait in triage I finally got to see the triage nurse & it was still at 66 so I had to be admitted immediately & hooked up to an oxygen tank to ger it back up to base line
I had to wait ages on a bed in the corridor before I was taken to a bed in Majors (where you spend a couple of days before being transferred to the assessment ward
Whilst I was there I managed to persuade the doctors to let me have my heart scan (originally made for me as an ,outpatient ) & the result wasnt good
Now Ive been diagnosed with a new condtion -Pulmonary Hypertension . Iam on Azithromycin for life to prevent any further infections & given Omperazole to stop indegestion
This has shocked me Then to cap it all I find out that the only specialists are in London or Sheffield & theres no facility in Manchester -well that made me feel worse
Im pretty su re that when my specialist came to see me she said I can think it over -next think I know the next day a doctor -who was only a medical doctor for the hospital who obviously knew about my case only went over my head & told me hes referred me to Sheffield.Ive got an appointment with my specialist on 1st November -so amongst other things Im going to be having a word with her about this
There is NO WAY was I going to go to London so in that respect I guess I have no choice -what infuriates me is theres no facilities in Manchester
I was told I might have to stay in overnight maybe even a couple of nights --this has upset me even more -its a town I hardly know I only know a few things entertainment wise about Sheffield but thats about it -
This is something Im NOT happy about . - Im the hospitals prize-& they know it.Prior to me being diagnosed with ILD in 2019 Ive managed never to be admitted to hospital in all 40 + years of life & I feel that has frustrated them -because I have had regular outpatients at the hospital since I was a child & even managed to avoid a stay when I smashed my pelvis after a riding accident -although at the time they tried & failed to get me in for a stay but I opted for home recovery instead & it paid off I recovered .
Ive now got new oxygen concentrators with a higher dial on it - It has to be on 4 when Im moving around & when Im at rest I have to turn it down to 3.
A part of my plan with the oxygen concentrators - in due course to get back to the routine of 8 hours off the machine completely & 16 hours on it
For now Im going to do 2 hours off it during the day then go back on it during the evening & for the rest of the night & build it up slowly until I can do 8 hours off it
When it comes to going to sheffield-whenever that is Im going to try & arrange for a large oxygen tank to travel with in the car because the small ambulatory ones I have only last 30 minutes & its about 1 & 1/2 to 2 hours journey (traffic pending) so Id need one for the whole journey & one for the ride back when im discharged-but that will be sorted whenits confirmed for me to go
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horseygirl_0103
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Good luck with your appointment, Sheffield is a great hospital and the medical staff are so nice. Please let us know how you get on. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxxx 🌻🌻💖
It’s surprising that a large city like Manchester doesn’t have facilities for you but if only 2 hospitals in England have facilities then so be it. At least Sheffield isn’t too far from you. If you need to stay overnight then I guess that would be in hospital? So doubt you will be gallivanting around the city . Even if not admitted you will probably be too tired after hospital tests etc to want to go out in evening.
Hope the appointment comes through quickly and you can get there easily. NB if oxygen and travel is difficult then hospital will have to provide transport ie an ambulance to get you there and back.
Good luck with your appointment. Hopefully it won’t be too long. I was surprised to hear that there are only specialists in two cities. This is really poor.
On the azithromycin for life, I am also on it, and have been for 6+ years because of repeated chest infections, and in that time I have only had one infection. This came about because my lung consultant told me to stop taking them between May and September because ‘people don’t usually get chest infections in the summer!’
I have pulmonary hypertension as well as ILD (and sleep apnoea). I am under the care of the London specialist team and have to travel there on oxygen. They provide patient transport and oxygen for me. I’m on oxygen 24/7. I can understand you are frightened by what’s happening, but I am certain your hospital isn’t desperate for you to stay. Why on earth do you think they view you as a prize? Be grateful for the care you are receiving instead of always being so negative. It really doesn’t matter if you don’t know Sheffield. You will be spending the time in the hospital, not sightseeing and gallivanting.
I absolutly know that it will be a nerve wracking time - Yes my specialist did confirm that transport with oxygen will be provided She also said it maybe that I could jsut be there as a day patient but to be on the safe side Im just going to take some pajamas just in case they keep me in - going to take lots of emla cream to numb up when blood tests become necessary. I am very grateful for all care I am receiving theres no doubt about that
And I know I wont be gallivaning around I cant even walk for a couple of minutes without being knackered so to be fair the comment about sightseeing & gallivanting seems a bit bizzare
What I mean by prize is that prior to me being diagnosed with this Ive managed never to be admitted as an inpatient in my life & even when I smashed my pelvis after a riding accident years ago they wanted to try & admit me but I took the more comfortable option which was to stay at home & just have physio & medication & it paid off it mended beautifully &
I am a million percent grateful of any treatment whatsoever & Ive researched on lung transplant s for myself so if it came to that I wouldnt be going into it lightly or without knowledge
I think the comment from Millyboo710, about gallivanting around was because of a comment you made about not knowing Sheffield, apart from a few entertainment things. Certainly when I read that I thought you were saying be at hospital in the day time or during appointments, but out and about in evening or other times.
I’m pleased you are grateful, sometimes your comments come across with a negative attitude. I still don’t understand why you think a hospital wanting to give you treatment (such as now or with a broken pelvis) would see you as a prize. Hospitals don’t want to keep people in if they don’t need to be there. There’s a great shortage of beds and staff. I thought your comment about not knowing Sheffield was bizarre. You will be taken there, given treatment and taken home. Why would you need to know the city? Good idea to take nightwear and toiletries. I went for a day visit to the Royal Brompton on one occasion and ended up staying six days.
I saw Professor Anthony Heagerty at Manchester Royal Infirmary when i had a problem with high bp. Perhaps ask if he could see you rather than travel to Sheffield x
Hi Horsey Girl. I was on the Azithromycin for a while but it did not suit me at all. I came off it and now manage my condition (Bronchiectasis) with regular lung clearance and diet. I would not recommend this unless you contact your specialist and he/she say it is okay to do likewise. May I wish you the best of luck with your appointment at Sheffield, which is, I have heard a really great hospital. Lilianne xx
Hi Horseygirl, hope your appointment at Sheffield hospital went well today. I'm also on Azith (3 times a week), omeprazole (twice a day) and other meds for life. My flare-ups (chest infections) has reduced this year. The Northern General Hospital; and the Royal Hallamshire hospital in Sheffield are great hospitals and the staff are wonderful. My Asthma and Bronchiectasis specialists are Sheffield based. I'm very happy with the treatments / services I get from them. Best of luck with your treatment in Sheffield.
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