Hi, I suffer with Aspergillosis, severe bronchiectasis and pseudamonus colonisation in both lungs. Last year I had frequent admissions to Hospital. 29 days spent in the Glenfield, 10 days with Northampton and more recently in March with Glenfield.When I went for my follow-up appointment it was suggested that it might be wise for me to be admitted before I get ill with a flare-up to keep on top of the bugs. Having spent quite a number of days in Hospital I am very reluctant.
I can see where they are coming from, as I leave it until I am quite ill and then it takes longer to recover. The thought of being in Hospital feels me with dread. After 7 days I have exhausted all I like on the menu! And there is only so much reading, listening to music and doing puzzles that you can do.
Has anyone on this forum gone down this route, and more importantly, did it work? I always feel I will come out worse than when I went in. A stay in Northampton gave me a sick bug and my weight plummeted to 6st 8lb. I am now 7st 2lb. It's been a hard slog putting the weight back on, and keeping it on. Your body is working so hard to stay still all the time.
If you have opted for this did they do blood tests beforehand and sputum samples, as how do they know what drug to give you? My days are gone where I can take oral antibiotics and have to rely on IV's. I also worry that when you really need them, your body will be immune to them.
Looking forward to hearing your views and hopefully experiences of this.
Stay safe.
Linda
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I’m colonised with pseudomonas which became resistant to oral antibiotics. I had two weeks of iv antibiotics (two different antibiotics) which I was taught to administer myself at home. To keep the numbers down I’ve nebulised colomycin ever since. I’ve had very few infections since then, coming up for six years. I’d definitely ask if your hospital offers at home iv antibiotics. You have the support of specialist nurses at the end of a phone. Pseudomonas lurks in the corners and has a habit of coming back if you don’t keep on top of it. As for how they chose the antibiotics the doctor knew which ones were likely to work whilst also taking into account my other health problems. Good luck I hope you can get on top of this.
Thank you for your reply. I have struggled for 12 years with infections and last year was my worst year. In March this year I was in Glenfield on two IV antibiotics, one of which was a 2 hour infusion 3 times a day. Have administered Meroperem at home myself, but this drug doesn't seem to kick pseudomonas into touch and I end up being admitted. I have nebulised with Colomycin for 11 years and do postural drainage and ACB, make sure I keep walking but I never go 6 months without needing IV's. Keep well and keep away from bugs.
I’m so sorry you’re having such a rough time. I’ve been there and know how awful it is. You may get more replies on the asthma and lung conditions thread on HU.
You can administer antibiotics at home if your hospital offers that service. I’ve been having regular home IV antibiotics for a few years now. I can work and carry on as usual. Highly recommend asking about home treatment.
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