Hi fellow sheilders 5 years ago I was unlucky enough to pick up a coliforms infection in my lungs,having chronic lung disease my body just couldn't get rid of it and it colonised in my lungs,it was awful leaving me tired all the time and couldn't find an oral antibiotic to get rid of it and went through a range of iv antibiotics to try and fight it but then it got into my kidneys and for almost 4 years I've been in pain that is ramping up with each flare up ,I'm basically on 2 week courses of antibiotics and a nightly preventative antibiotic which have never worked and my doctors have tried many different antibiotics,since last year I'm not getting any relief from symptoms,the pain is so terrible,I'm on my sixth course of selexid(pivmecillinam)and nitrofurantoin at night in 7 weeks,the pain is unbearable,and I was just a few days from my appointment with urologist when covoid 19 hit our world,so the last place I should be is anywhere near a hospital or a foot outside the door,as I have multiple comorbidities.
I know I was referred by a consultant in the hope urology would consider me as a candidate for interversical gentomycin treatment,its a fairly new form of treatment and was wondering has anyone had any experience of it or know anything about it.
I feel so selfish for even thinking about this,but I'm absolutely exhausted and having managed to stay on my feet all these years with the help of my oxygen and rollater,I'm now being referred for a powered wheelchair and the feeling of relief as I have only been out of the house excluding hospital visits or admissions I have only been out of the house 2 or 3 times,so I have been feeling like I'm in solitary confinement for a long time,if anyone knows anything about interversical gentomýcin treatment I'd be so grateful
Take care everyone,stay safe,stay home and I hope you'll be outside in the sunshine in not too long,and my gratitude goes out to my brave carers who are still coming to my home and to all the nhs staff and the people working in the supermarkets ,good luck everyone ,I wish you all so well,🌈🌈🌈❤❤❤
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Stitcher48
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So sorry you are having to deal with all this Stitcher, I am unable to help you regarding the treatment you mention but I do hope you will begin to get some relief really soon.
I do hope things improve for you. Don’t be afraid to go to hospital if your doctor considers it necessary, you will be kept well away from Covid patients. All the best xx
Stitcher48 I am so sorry I cannot help in anyway with your situation. I hope and pray that you can get relief in some way. It sounds so terrible to be in such pain for so long and with no real success to this point. No you are not selfish to be thinking about your situation and seeking help. Love, thoughts and prayers going out to you.
Morning Hun, so sorry to hear of your painful 5 Years. I agree with all the other Comments, Just to say, we are all here for you. Sending Love & Prayers to you & your carers who need to be Strong at this time. Stay safe. XXX C.
Nice to hear from you again , sorry its not good news but ever the optimist, maybe when this virus passes you will be able to get out a little again in the wheelchair. I'm looking forward to when us sheilders can go out again , if only for a little break from the four walls. Have got used to this total isolation but don't want it to remain the future if possible , one day at a time every cloud has a silver lining, stay save
How awful for you Stitcher. I am sure if you had to go into hospital it would be safe at the moment as they are keeping people well away from the itu wards. I wish you well and hope they can come up with something to get you back to some kind of normal x
On top of everything this Covid thing has made even going to hospital a stress or challenge.
Can't help on a medical level but everyone else without these illnesses have only been living like us all have had to for years and they are finding it tough - so I think you have the right to feel a bit rubbish. You're not selfish at all. You just want something to go right for you and Covid is making a hard situation worse.
The doctors are clearly trying to find the right treatment. hopefully that will be soon.
Feel for you. Hope you can enjoy looking out at the sun today.
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