Hi all I’m new here and having quite a dilemma firstly I’m 47 years old and had 3 episodes of pneumonia first when I was 5 on Xmas day fell unconscious and was hospitalised then came down with a illness at a time when I thought I was fighting fit,
Started with a irritating pain in my side that quickly progressed to excruciating pain where any slight movement I was screaming in agony. Over the space of 5 hours, after being taken to hospital to be told I had a pulmonary infusion on my left lung and basically it was filling up with fluid then diagnosed with pneumonia.. after 1 night in hospital no draining of my lung only antibiotics and steroids administered it was a slow road to recovery. 2 months later I came down with a flu like illness was a little delirious had a soaring temperature and once again admitted after my gp couldn’t hear air circulating around my lungs. This time I was basically quarantined into my own room and taken for a MRI scan then sent home with no diagnosis and no medications. After 3 days at home on my own rang my daughter to tell her I wasn’t well in turn she got me a emergency appointment with my GP who then proceeded to tell me the scan showed my lungs are in a hell of a mess I have emphysema and that is likely the pneumonia had returned, when I asked why the hospital didn’t tell me was told they aren’t permitted too when your going there to be seen for another issue!!. So basically I’ve also got COPD to add to my current condition and with being so young I am so devastated especially as a single parent and the sole parent of my only daughter who’s 27. Since all this I’ve had a year with no other problems. Until a few days ago had to call for a ambulance for my 92 year old grandmother diagnosed with serious pneumonia affecting her oxygen levels and low sats. The x-Ray determined that her right lung is full of infection/Mucus /bacteria. She was put on intravenous antibiotics and a drip along with a oxygen mask. Blood samples showed her oxygen levels were bad. After 3 days of her admission and moved up to a respiratory ward they stopped the antibiotics intravenously after 2 days and given orally t, then was informed they are going to get her up on her feet today !!! So I went to visit today they hadn’t got her up at all but had taken the oxygen from her and were going to discharge her tomorrow, that leaves myself and my mother who is 69 years old to care for her 24/7 she lives in a 3 bedroom house I can’t do it plus it’s dangerous for me neither can my mother she’s not halfway through her course of antibiotics yet and no follow up scan has been done yet to even see if there’s any improvement so how can one ward tell us it’s very serious and she will be in there for a long stint to the next ward saying she’s fine to go home!
Any advice on this would be appreciated as I’m at a loose end.
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Jojo7292
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Hi well there’s a point my father had COPD and I would take him to see his specialist on one occasion my dad said to me well it looks like your doomed too as hed been told it was hereditary people I mentioned this too said no way that’s rubbish...
The hospital has a responsibility to ensure your grandmother can be cared for at home.
I know how difficult it can be when you are not well yourself, but tell the staff of your family circumstances.
The hospital social worker will have to arrange after care , either respite or home carers...but when she is fit enough.
I had similar problems when my late parents were alive....I know how difficult it is to arrange things when feeling ill.
Back to your chest problems....I was 47 when first diagnosed with double pneumonia then asthma. Again your GP has a duty of care to you....arrange a double appointment if necessary and discuss your worries and your necessary treatment, and a referral maybe.
The BLF have a helpline , open during the working week
03000 030 555.
Or try contacting Age Concern about your grandmother.
Yes I have done this thank you for your input much appreciated I used to work in healthcare myself until I became poorly, ao luckily know what’s to be put into place for her and have managed to get all the necessary aids in place and care team, what my main worry is that they tell us her pneumonia is very serious, one lung is a huge mass of infection and it’s also in the left lung too , her oxygen levels were badly affected resulting in her being in permanent oxygen for the first 3 days of her being there and they said the most effective way to treat it was antibiotics given intravenously. We were also told she would be in there for some time then as soon as she’s moved up to another ward they take her off oxygen give her antibiotics orally, push her up to start walking and yet the doctor doing his rounds told her it’s still very bad, her antibiotics stop in a couple of days time. So how is this possible ?? She can’t surely be remotely healed yet?? I worry what will happen once I get her home ..
Hi, welcome to the BLF patients forum, the right place to come for support.
Your story is awful, I do feel for you.
Are you in UK? Do as Knitter suggests and give the BLF nurses a call today between 9-5. They can offer great guidance on moving forward.
In the meantime, do all you can to prevent catching infections. If you're lung compromised a simple cold often turns in to a chest infection needing at least 7 days of a good antibiotic and possibly a short course of steroids.
Many of us here have a 'rescue pack', abs & steroids to take if we're caught out during wkends or holidays.
It's winter, even healthy people's immune systems are diminished by fighting off bugs & viruses.
Take everything you can to rebuild your own immunity. A good tonic for starters, then a good multivitamin.
Request that Alpha 1 Deficiency test, especially if you've not smoked or worked in a hazardous environment.
Wash your hands loads, dont touch anything others have ie door knobs, avoid people with bugs, wear a mask with mum, invest in Vicks Cold & Flu Defence to use on going out, travelling, before meeting people or visiting hospitals.
Keep coming back to us for support - I do think the brilliant members saved me when I joined almost 7 years ago.
Main things: knowledge and being self proactive. With compromised lungs you can always get a same day gp appointment. All the best
Hi peege I’m in the uk yes I have been for my flu jabs I tried to get the pneumonia vaccine but there is non available at my GP they tell me they’ve waited for a batch to arrive for quite sometime now, as for the rescue pack I asked my GP about shouldn’t I have this he checked my notes and said because I’ve been ok for the last year they won’t give me one UNTIL I HAVE A EPISODE!! unreal ....... My dad died through COPD complications and wasnt at a advanced stage he was only 63 and he didn’t have a rescue pack either !!! We didn’t even know what one was until people started asking us after he’d died .
At the very least you should have a respiratory nurse at your surgery with an annual appointment - if you haven't then organise it asap, they're sometimes more knowledgeable than GPs.
(Some (or one in my experience are totally useles)).
My gp also won't give me rescue abs, only steroids.
I say asap because my annual respiratory check has fallen in May when the worst is always over for me having asthma and mild bronchiectasis.
Good luck - if you don't get that Alpha 1 Deficiency test then get it privately, beg borrow or steal if you're hard up, it's so important to eliminate or confirm it. P
I can only send my love and say how sorry I am to hear of your experiences. Hopefully others may be more helpful. 😭
Thank you poemsgalore1 and may I say I’ve never witnessed a site where there are so many lovely attentive people to offer support and advice it’s wonderful
Hi they tried to do this to my elderly mother. We told the hospital that she wasn't leaving until she had a care assessment and a package in place. Then we contacted social services to arrange this. Tell the hospital this immediately.
Whilst we were waiting for this the hospital tried repeatedly to transfer her to a local cottage hospital to free up beds. We were only told this coz we insisted she wasn't moved without letting us know. She needed a proper hospital so we stopped it each time.
We learnt from experience as they had done this to our father which caused him distress. Twice the local hospitals had to return him as he was too ill, and unfortunately he passed away.
You have to be firm with the hospital and make a lot of noise to stop them messing him about otherwise they will do this to him too. Good luck. x
Yes @ HyperCat54 that’s the top and bottom of all this “they want the bed on the ward” it’s disgusting shes 91 and age has a lot to do with how they are treat in hospital
I’m so sorry for your loss it’s so infuriating that they caused all that stress at a time when your father should have been cared for at hospital by people who we trust to do this instead of shipping them in and out like they’re on a conveyor belt !!
Hi Hun, Welcome into the Bosom of our Forum. You have been through so much for one so Young(same age as my daughter). I too was told my COPD was Hereditary and my Grown Children must be tested, this was years ago. They had never smoked, though I had. My Daughter did develop Breast cancer, She is now in her first 5 year remission. Do you think it is because your Nan is her age @92 that they have a certain Attitude , I know that shouldn't matter, But Pneumonia at her age. I must praise my GP & Hospital, as they are all very good with updates for all jabs & Quick Appointments. I am still having my Recent Birthday GP Check Up in two stages, very thorough and no waiting. Alas my Sister in Law at 57 developed Together COPD & Lung Cancer she had no time to Understand any of it. Luckily for all of us on this Forum we have had time to Digest & Understand and Help each other, This is how we have all Learned our Different Types of Lung Diseases. All you can do now, for you & your Mum is High Protection, and the Exemplary Advise of our Forum Friends on here. Best Healing Wishes to you, Your Mum, & Gran. XXX Love & Gentle Hugs C.
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