Hiya, sorry for what is bound to be an extremely random post!!
I know where I want to be and do in the future career wise, but it involves going back to uni (happy to do this!) and asthma probably being far more controlled than it is at the moment. It so means that I will have to have some finances behind me!!
Currently I'm a teacher and I have been thinking for a whe it might be good to get some experience teaching abroad ... been looking into it a fair bit recently and it all looks pretty promising. Looking at china/UAE/Singapore etc.
The question is though - I'm pretty brittle and have been having loads of severe attacks. Somewhere like china is bound to potentially trigger an attack. What are foreign healthcare systems etc like? Will insurance policies cover frequent admissions (assuming I remain as uncontrolled)? Is there anything else I should consider? Am I being stupid to even think about moving abroad (albeit for a relatively short period) with brittle asthma?
Sorry again for randomness and rambling!!
Laura x
17 Replies
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I'd give yourself at least a year to find out whether this level of severity and brittleness is just a phase or a long term situation. Until then, I don't think it's worth even looking in to. You need to give your consultants time to work out what the 'best' looks like for you!
Cheers curiouser ... I'm wanting to go to med school at some point school - to do graduate entry. Reckon I need more control before that?!
Kinda in limbo with where life is heading at the minute as not sue where things are going health wise. All things seem to be pointing at this going on for a while - hoping not though and to work some magic at resp apt this week lol ... kinda relies on me not melting/closing down though eh? I leave my job at the end of the academic term and not sure what to do after leaving
Hmm loads of weird and wonderful ideas ...
Laura x
Hi Laurs,
in my experience you need much better control just for your own sanity!
I did my 2nd year uni exams while really unwell, and then had kenalog injections for my 3rd year - and Soph is constantly fighting the battle between admissions and uni work.
Whatever the future holds for you, it has to be better than the current situation, just by virtue of you having time to begin to manage it with your expert docs properly.
Cx
Hi Laurs, I dont want to put a dampener on things, but my mother in law recently went to China. Her first comment to me when she got back, was that it would have killed me - literally. The air quality was so bad that you couldnt see the sky for smog, she said it was like a constant fog and combined with humidity, she couldnt breathe (nothing wrong with her lungs). My hubby is a doctor and has said under no circumstances would he let me go to China - he has also been there for an extended holiday as his best mate is chinese.
I dont mean to sound negative, it just worried me!
Lynda x
Cheers curiouser and Lynda,
I think tbh (and I know it's not very smart!!) I just want to stick two fingers up to the whole thing and say ""screw you"" ... but that's just where I'm at mentally at the min. This better be a short term thing, cos can't keep going through it all long term. Life seems to be ruled by when the next admission is gonna be and can't make any plans cos of it.
Curiouser - I really feel for Soph, she's awesome and keeps my head screwed on definitely!! She's so young yet manages things so well - she's coming with me this week to a resp apt genuinely do not know how she juggles uni and admissions etc ... I really hope they are able to do something to get her more controlled!! I'm handling things worse than she does and I'm 6 years older hmm.
Lynda - thanks as I said just kinda feel in limbo at the min - leave my teaching job next week - long story! Who's gonna employ me with my attendance record?! Don't want to claim benefits and don't think I'm ill enough for any disability related stuff. I'm not gonna make any rash decisions though. Would perhaps Europe be a better thing to consider? My concern is language barriers and treatment in hospital, as by the time I get there I need all the IV works - leave it til this point though otherwise I might as well live in hospital. At least doing this is giving me a few days at home in between admissions. BUT was discharged a week ago from the last one pretty good going currently, yay!
Cheers again guys!
Laura x
in reply to
...Soph, she's awesome and keeps my head screwed on definitely!! She's so young yet manages things so well - she's coming with me this week to a resp apt
Of course - tomorrow! Good luck with that.
I'm in the Endo clinic at Jimmy's tomorrow myself. Sadly my appt is 10.30 and we have to leave straight after as my other half has patients booked in from 3 (we live 2 hours away). Would have loved to see you and Soph for a coffee otherwise.
I hope it goes as well as possible. Is Leeds your normal for acute admissions as well? I'm supposed to use it rather than my local hospital when possible.
Cx
I can understand how you feel as until I started going to Papworth, my life was just one big cycle of admissions and discharges.. the other thing to consider is how much your travel insurance will cost! The last time I went away, four companies refused point blank to insure me, the fifth did insure me but it cost almost £300 for nine days..
I did have to leave my job as a nurse, as I was always off sick, the last year I probably worked all of two months. And of course I was also unemployable after that, not only because of my sickness record - and leaving due to ill health, but also because I continued to be really unstable. Im now retraining as a psychotherapist. Its something I've always wanted to do but never had the time ironically. Its part time over 3 years so Im just about managing it in terms of attendance and workload. And its a sitting down job which impacts my lungs a lot less!
Having known what my hubby went through as a junior doctor and then an SHO, I know wouldn't cope with that now, so I would worry how you would manage being so unstable. The hours are still quite long and extremely full on and busy..
Hope you manage to stretch out your stay at home!
Lynda x
Cheers for your support Lynda I'm just feeling sorry for myself at the min and whinging ... lots!! Do you manage to pretty much stay out of hospital these days? Is that because papworth have managed to give you extra control, or because you are more equipped to manage things at home now? One of my biggest bug bearers at the minute is that it's ""too dangerous"" to allow me to have a home neb as I push things too far - my argument for is that actually I'm less likely to push it, as if it didn't work I'd be more inclined to go into hospital. At the moment, I'd be in every day, several times a day if I went in at the point of 20 puffs through a spacer not working, which is why I leave it - permanent hospital visits = no quality of life!!
Gonna bring it up yet again at my Resp apt this week - another brittle friend is coming along with me, perhaps I will be less likely to meltdown. I don't want to let the resp team know just how it's effecting me mentally though, incase they latch onto it and say that it's all down to anxiety!!
I bumped into the ""asthma nurse"" at my GP surgery a few weeks ago, having just been discharged from a ""life threatening"" attack for her to ask if I was sure it wasn't just anxiety which caused a panic attack .. err no - how would my po2 be at 8 (AFTER oxygen) pco2 4.5 and pH 7.45 if it was just a panic attack?! ABG numbers didn't seem to mean much though - I'm not gonna pretend I'm an expert, but it was bad enough for them to put me in scary units of the hospital!!
Ugh ... the only thing which causes me anxiety is being anxious that they'll say it's anxiety!!! Lol!!
I think it is a lovely idea to create dreams for your future even if you can't do it right now.
I wouldn't recommend Singapore if you react to high humidity, I spent 4 days there on the way back from Australia many years ago and it affected me really badly. Sought out air conditioning at every opportunity and I love 'fresh' air normally!
I'm in a pretty similar situation. I currently teach in Japan.
On the national insurance health insurance patients pay 30% of the cost of going to hospital regardless of how often you go.
Or there's private insurance where you pay the full cost of the treatment and then get 100% reimbursed by the insurance company.
I'm not sure what the system China is using though.
I will say my asthma has gotten worse since coming to Japan though.
Going from seretide and singulair in the UK to daily pred and nebs etc etc in Tokyo.
I so get where you are coming from.
During my worst time of admissions I really just wanted to crawl in a corner and hide. At times I was so rude to the nurses and Dr but luckily because I knew them all so well from all the admissions they were so understanding and tolerant!!
After my respiratory arrest I remember saying to my mum-I don't care what I die of even if its being runover by a bus tomorrow but I won't let my asthma be my killer. From that day onwards I was so determined to get well enough to live a proper life again instead of a life inside a hospital room.
I have had to give up so much I enjoyed including being discontinued from my nurse training, 18 mths into a 3 year course and also from a job as a classroom assistant both on medical grounds.
I think you should set your dreams and goals but also be realistic about your limitations at the moment.
I know how hard it is to stay positive as I'm much better than I used to be but when I have a bad few days/weeks I get so down and tearful as I know how 'good' to me feels.
I'm not going to lie to you-I struggled through about 3 years of brittle attacks and admissions every few weeks BUT we got there in the end. I was referred to a brittle asthma clinic in Birmingham. I saw Prof John Ayres-not sure if it is still up and running but the treatment and support I got there turned my asthma around. It was about 15 years ago but someone on here may know more info about it.
Fingers crossed you carry on staying out but please do go in if need be......Has anybody suggested a planned long stay (I did one for 3 weeks once following an emergency admission) where they do so many tests your head spins but that helped me and although they ruled out lots of other conditions etc it was really helpful to know there wasn't anything else going on/hidden and also it gave me the opportunity to try new things under close supervision. It was a long 3 weeks but I had one weekend leave and when I was feeling upto it I could go for wanders in a wheelchair with visitors so wasn't as bad as it could have been. It helped that one of my CF friends was also in for her routine IV's so a lot of chatting helped passed the days!!
Curiouser - noticed youre online - I'm actually Derbyshire but travelling to see soph I'll be in Leeds around 9.30 tho
Cheers everyone for being so supportive - will reply properly in a min xxx
Perhaps as I'm getting there so early, before/after would be poss? xxx
Despite an early start tomorrow, sleep seems elusive!! Either down to not taking pred til after midday (had a bit of a crisis) or cos lungs are doing their favourite thing ... stropping! So ill reply properly now please do excuse sleep deprived ramblings!!
Fb- most of the people in my local - resus, hdu and Resp wards know me now. I get pretty obnoxious at times - I make them chuckle when I try to refuse to go to resus and tend to try and get away with not using oxygen going for X-ray etc. I just get laughed at these days!! They know I'm generally not like that per say and probably suspect I'm struggling to cope with admissions.
You really had 3 years of it?! I've had 6 months of getting worse to where I am now .. averaging at an admission every 5 days usually being 2-4 day stays. Can't do it for another 3 years!! I know we're all unique tho! I'm not scared its gonna kill me off, I get to hosp in time - tho normally not in great shape, but not pushed it too far!
There's been no mention of a long stay; other than at my last admission when a junior resp said I wouldn't be out until I had some control ... I made it very ear he following day that I would discharge myself if that happened. I will try to mentally gear myself up and prepare myself just incase!
If I need to go in I will, I have weird markers and routines for when its time and so far it's worked! I just find that the longer I get at home the better I cope with admissions - weird trying to outsmart the asthm constantly. Still don't like the brittle dx either!!
Shadowcat - thank you ... I think I may be revising my plans and ideas atm in the hope that control is gained and maintained!!
Sorry for sleep deprived ramblings and for all the support!!
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genuinely do not know how she juggles uni and admissions etc ... I really hope they are able to do something to get her more controlled!! I'm handling things worse than she does and I'm 6 years older 
Smart asthma app and monitoring system 
Prednisolone dependent - considering controlled reduction in hospital
Peak Flow doesn't always drop despite being symptomatic. 
What is acceptable with regards to symptoms?
Ventoiln being stopped
