confidence, money and nebs

Since starting university 6 weeks ago i have had 2 overnight hospital stays, 1 week long visit and another trip to A&E where they sent me home after a few nebulisers. I'm really shaken and have really lost my confidence in doing anything. I've been out of hospital 3 days, but im still definately not 'right' i just feel like doing anything completely exhaustes me and i get breathless so easily. the respiratory nurse kept reminding me that it would take time, i just guess that i hoped it would be a little easier than this.

Anyway, enough of the moan, Uni have been really supportive from day one, they have arranged people to come with me to A&E of paid for taxis for my friends to get home if they come, theyve sorted all my work out and given me extensions and stuff and recently theyve offered me access to a fund for disabled students which i am eligable for. Its basically for things that will help me manage my condition and keep me well and out of hospital. Given that i have basically nothing other than my prescribed inhalers, spacer and peak flow meter is there anything that anyone can think of that would help? Im tempted to see if it covers things like hypoallergenic covers for bedding? Does anyone know if pulse oximeters are actually a useful guide as to how well your lungs are doing? that kind of stuff? any advice would be helpful, im sure there must be things, i just cant think of any!

Finally, Home nebulisers, i know theyre not for everyone, but im tempted to talk to my respiratory consultant about it. i just feel like if im going downhill fast early intervention is key. I feel like i couldve avoided 999 calls if i could have done a neb at home. I obviously know that its important not to be over reliant on them as when imin a bad state nebs just dont do it anymore, but i feel like i might be able to avoid getting as ill. or even just use it while im waiting for the ambulance, so treatment is as quick as possible? does that sound sensible? is it worth asking about? thanks for any help! im fairly used to asthma but not of this severity.

Sophs

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Hi Sophs,

Glad to hear your Uni. has been supportive. Moving away from home, and dealing with asthma can't have been very easy. I loved college, but I remember the first semester being a lot to adjust to at first. LOL. I remember having to get my own phone for the first time, and how stressful it was, because I didn't know what I was doing.

I actually got officially diagnosed with asthma in graduate school, so it was an adjustment. Over the years I've gotten mattress and pillow covers (definitely useful!). Also I changed my bedding to be more allergy friendly. Right now I have a nice fleece blanket that is easy to wash, and a down-like comforter that is super soft, and also easy to clean.

I'm in the U.S. so I'm assuming you guys have most of the same kinds of things..I also found in the dorm, that a good air filter was really helpful, as you don't have as much control over the building you're in, or what other students get up to (smoking or scented candles etc.). I also use dust clothes, with a little bit of water, for dusting as it doesn't stir up so much dust, a face mask if I think something is really going to set me off (actually I have issues when I go through old mail go figure), and have a vacuum with a HEPA filter, which also stirs up less dust/debris when you're cleaning.

Actually, scents really bother me, so I also tend to use old fashioned options for cleaning. People used to use baking soda and white vinegar to clean sinks and such, and it has a nice fizzing reaction. I also use dish soap, and a little bit of bleach when I need it. But I find this works well, because I can sometimes add a scent (like lavender) that doesn't bother me, but white vinegar and baking soda are also very cheap! Vinegar is also the main ingredient in glass cleaner.

As far as home asthma treatment, I went for years using a spacer with inhalers. It was good, because I had a very clear idea of when I was supposed to go to the hospital (you can take up to 4 puffs of ventolin but then you need to get help). However, over the years I was eventually given a nebulizer, and now I use it as a four times a day thing, when I'm ill. It's actually been a life saver, because like you said, I can start the treatment earlier, I don't have to wait for emergency personel to decide if and when I need it (and get in trouble waiting for them to arrive and assess the situation). I also have permission now to do one back to back treatment at home, which has saved me from having to go to the hospital a few times.

Now, the up side of the spacer, is it's super convenient, and can be easier to use when you're out and about. But it is nice to have both options.

Bee

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yeah, not sure what i'd do if the uni were not helping me out. I'm losing so much study time, but the last thing i need is to be stressing about that as well! i'll look into the matress and pillow covers, hopefully they'll be fairly cheap as money is always tight around christmas, unless uni will cover it!

I guess it might be worth talking to my consultant about it, although i think he's a bit useless. He spent days ignoring the fact that my heart rate was over 160 because i'd had a nebuliser in the last 24hrs, one of his students told him off! it was very funny!

thanks

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Soph, your grant would more than likely cover your pillows and duvet etc because allergies are what trigger your asthma. By definition hypoallergenic bedding would be considered 'apparatus' to help manage your condition on a daily basis.

A room de-humidifier may also be beneficial for you too.

With the pulse oximeter that'll be hit or miss in my opinion because whilst they're very good indicators of your SpO2 levels and HR you need to understand what is the norm for you and not rely purely on what it is telling you, e.g you feel grotty and starting to feel onset maybe approaching you whack the pulse ox on and it's telling you you're fine and also vice versa.

Hope you manage to find a way to better manage your asthma

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I think you've got the wrong idea about DSA it cant provide medical equipement such as de-humidifer. It would be to cover the cost of studing that are diferent to normal students. SO Ive known people get expenses towards getting to uni/placements, laptop to take with you when in hospital, mentor/study skills lessons, a allownece for printing and dicaphone to record lectures, exams in own room etc.

Once youve applied then you get a needs assessment in which someone will go through things you have difficulties with and what they can help with. They cannot provide medical equipment.

Home nebuilsers... well Im not a advocate of them, I think if need a neb in an emergency needs supervising. Yes I have home nebs but sometimes wish I didnt as get sent home before Im ready as I can do nebs at hom so not need to be in hospital for them and recently I dropped my potassium really low as its a side effect of sally and ended up in SVT so now Im only allowed max of 2 in a row at home...