bronchiecatasis with psuedomonas

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Hi just wandering if anyone out there has applied for the PIP due to having this disease i have just had 6 weeks on oral antibiocs as well as 3 months on a neblisar one and have been on 2 weeks of IV to which the psuedomans still had a heavey growth so had another 2 weeks on another IV antibioc and still the bug hadn't gone feeling a fed up as thought after all the antibiocs it wouls have done one and had to have 6weeks off work,and am finding work harder as feel tired alort of the ti

 

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  • Posted

    Yes Deborah,

    I applied a couple of years ago but I was told I didn't qualify for it with this disease. I'm guessing no-one with this had ever applied before and they don't understand how debilitating this condition is. I was so angry.

    Hope you have better luck.

     

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  • Posted

    Oh, Deborah, so so sorry you are going through this. It's so hard to clear up that darn bacteria. As I understand it, it really never goes away once it has set up house in our lungs and colonized it can lay dormant, but can rear its head at any time. There a few different breeds of this bacteria and I guess I'm pretty lucky because I have the most sensitive of them all and it reacts nicely to my regiments of drugs when it rears

    its head. I just pray it will always be that way because I've had it since 2009 and no hospitals or IVs yet, just these awlful daily regiments, which we all know is freaking tiresome. 

    Just get as much rest as you can for that is best for us 

    i do hope you start feeling better soon

     

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  • Posted

    I don't know what pip is being in Australia but I don't receive help either and have three young children and it's debilitating. There should be more awareness of how bad it actually is and how susceptible you are to germs and bacteria. I'm having most of my right lung removed today in actually 6 hours time as I was unlucky to contract NTM nontuberculosis mycobacterium and its resistant now. But still no assistance and it's financially crippling.

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  • Posted

    Hello! I am so sorry to hear what you are going through. I assume PIP is like a government financial help program in your country. I live in the U.S. and have been fighting courts and government program to try and get assistance for the same reason. I was turned down the first time and am appealing it now. This process has taken nearly a year and my family is near broke because of how affected my health has been from BX, asthma and pseudamonas for the last 3 years. It is sad that sick people can't get help. Best of luck to you😊

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  • Posted

    To both you, Deborah in the UK, and Debra in the States, I suggest the following: Have someone with you filming every interview, assessment and or required visit with a hostile gov't-paid doc. This way you've got proof that you were not jogging in place when the interviewer/assessor/doc etc., writes a report that says, "her lungs are better than mine! She jogged in place for 45 minutes with a 100 lb pack on her back, talking the whole time." From what I've read here, this happens just as much in the UK as it happens here.

    Keep an accurate list of all medical visits & prescriptions, even if you get a UTI. Make sure the assessment ofc. is looking at ALL your records. Go to a medical library & make copies of some articles about bronchiectasis & pseudomonas, then submit those articles to the assessors. Here in the States it is best to submit them via a certified letter with return receipt - expensive but worth it as all gov't agencies pay attention to certified mail Include a cover letter that states that you wanted them to have clear medical info proving that these conditions exist & are serious & debilitating. I went through this for back & sacro-iliac injuries. I only foundout 2+ years into the process that the government said that there wasn't a sacro-iliac joint in the human body Ha! There are 2 of those. I had to come back to Texas to live with friends, and tons of docs & nurses tried to say the same thing.

    The funny thing about bronchiectasis is that it seems to be the one ailment about which Quack Quack Google does not say that you're going to die in 10 minutes. Nowhere have I found an accurate description of what it does to one's life, though somewhere I read that it reduces life expectancy by at least a few years.

    Good luck.

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    • Posted

      Thank you for the tips! They sound great! I have hired an attorney for my appeal. The ridiculous part is that I could earn so much more working than I will ever be awarded by disability! Who would do that if they were healthy? I used to work a full time AND part time job before BX and pseudamonas! I would trade any day to those days. Thanks again-hopfully I can find some medical info bout these issues😊

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  • Posted

    Hi, my daughter has bronchiectasis, severe asthma, chronic rhinosinusitis and allergies. She gets PIP at the enhanced rate for both personal care (because of the daily physiotherapy required) and mobility (because of the breathlessness.) It's important to remember that just having these conditions doesn't automatically entitle you to pip, it's how these conditions effect your every day life. So when completing forms, you need to ensure you make this clear. And also you have to compare yourself to someone similar to yourself who doesn't have health issues e.g. - can you walk the same distance, as quickly and as safely as someone of your age without this condition? And are you like this for over 50% of the time? So whilst you might be able to walk X number of metres, you might not be able to walk as quickly, safely, for as long as well person. And it might be worse in winter/bad weather. So some careful thought should be given to completing forms. Good luck

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