Having just been in costa again which included a stay in itu on a vent this is something that has been playing on my mind and wanted to know if anyone had any experience or advice for me.
Up until last year my attacks were always the same -gradual deterioration until home meds were no longer effective or it wasnt safe to stay at home but in 3 out of the 4 most recent admissions i have had theese have been very different and in someways more scary. I have had 2 or 3 days of going downhill a little with no obvious response to increased meds i then go into a very sudden attack and deteriorate very quickly, with each of these i have ended up on a vent. I have been diagnosed a type 1 brittle by RBH and from what my con has said after talking to RBH is that i can now add type 2 onto that as well! Im not happy.
How do those who have these sudden attacks cope esp if you have kids to deal with? What causes the change in my asthma?
Sorry for the questions but im feeling rather scared and vulnerable atm.
6 Replies
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Hi,
so sorry that things have been rough for you, I have type II and to answer how do we cope? well I guess its different for everyone but the best I manage is to have everything sorted all of the time, by that I mean a plan that the kids will follow if it happens, of who to ring and where to go etc.. I always carry a packed bag with me and keep my protocol for the hosp on hand at all times and try not to go to places to far from an A&E dept.
There is no easy answer and everyone will find their own ways of dealing with it, and forme my youngest (10) is better at coping when it happens than his 13 year old sister but maybe in time that will change.
Its hard living with the constant fear of when and where it will happen and I think that is something that most of us dont come to terms with just find a way of getting on with it, I have also found being open and honest with people helps a lot so you can talk about how you feel instead of bottling it all up.
I had a change in pattern a few years ago. It coincided with coming off permanent s/c ventolin (I use it as & when now) My general chronic side has improved but I am more prone to type two brittle attacks now.
I can cope with the gradual deterioration but not the sudden ones that sometimes come out of nowhere. though I could associate them with 'getting carried away and doing too much' and therefore getting over tired. ( also when in my flat with neighbour from hell)
Mine has been described as type 1 and type 2 now.
I only have myself to deal with but I am a bit nervous when looking after sisters kids.
It seems to be something that can happen and there are others out there who after years on heafty meds have a change in pattern of their asthma.
It is difficult and scarey but I have learnt to manage my life to lesten the possibility of a humdinger, though they still happen! everyone is different though.
Hope this helps a bit
Take care
Kate
XXX
Hi
I've been out of costa a week. That attack was very sudden and severe, needed ITU and a vent. I was alone at home with my 5 yr old daughter. I managed to press the number for my mum on the phone and my daughter then told her i was poorly and needed an ambulance.
Since then we've been teacher my duaghter how to use the phone and who to call including what to say if she has to dial 999.
My asthma has changed over the past 6 months, I too had a couple of days of slow deterioration but now am well one minute and on a vent the next. It is scary but you just have to try and plan ahead, like knowing where the nearest a/e dept is, telling family and friends what to do if you deteriorate.
Best wishes
Truly
Thanks for your replies . I have to admit im always prepared as such with my bag packed etc, all my family and most of my friends know what to do when i have an attack (well the type i was having until more recently). My kids know who to phone/go to, where all my stuff is , how to set up neb etc so im not worried about that. With the speed the last one arrived with if hubby wasnt home i dont know how we would have coped as it takes time for people to come and obviously there isnt alot of time , i guess the kids would just have to come to a+e and get collected from there.
Im always careful that wherever i go i know where the nearest a+e is so am prepared in that area too.
Kate- i can see where you are coming from with the doing too much, when this last one happened i had been at a brownie afternoon then gone to a 50th bday party (although i was only sitting quietly chatting all evening) i went off about an hr and a half after going to bed ,but the previous one i had actually been doing not alot i think??!!
I have spoken to my community nurse a bit now and admittedly i did have a good cry and have decided im not going to let this stop me from doing what i want and can do and will just have to deal with it as and when it gets me!!! But yes im still flippin scared!
Hops
Don't worry about the kids they are survivors, you know mine are younger than yours.
If worst comes to worst they just bung us all in ambulance and kids get thrown at a HCA who takes them to the childrens ward until someone can get there to collect them.
Marmite
Hi Hops,
I'm sorry to hear that you've had such a rough time recently, it's not at all surprising that you're feeling vulnerable and scared. It's a very normal response to what you've been through recently. I've no real words of wisdom for you, I'm afraid, just wanted to say that I understand what you're going through and a little of how you must be feeling. The post-ventilation fear does get better, with time. The first few days and weeks at home are often very hard - it can make you feel much more vulnerable, being on your own with no back-up, no-one checking obs, and so on, but your brain does adapt with time and things get easier, the bad experiences recede into the background.
I don't think anyone really knows why asthma or brittle asthma changes its pattern, over the years. It's just one of the many things that is not fully understood about this condition. I have asked some of the most expert consultants in the field of difficult asthma this same question, and have not really got any answers. It's very frustrating not to know 'why' - I am one of those people who always wants to know why - but it's not uncommon.
I've had brittle asthma for about 12 years - Type I with Type II type attacks. Initially, despite being officially diagnosed with Type I on peak flow criteria, I was relatively well in between attacks, with a fairly reasonable exercise tolerance, and was able to lead a relatively 'normal' life in between being unwell, including going to medical school and qualifying as a doctor, although not without some difficulty. I did have sudden onset, Type II type attacks, which invariably landed me in hospital and sometimes used to put me on a vent, and these were very frightening. I used to recover and 'bounce back' quickly, though, and could be in ICU one week and back at Uni or work the next (not a strategy I would advise, though, in retrospect; I didn't give myself enough time to recover, physically or emotionally). The sudden onset attacks and ventilations were very scary, but because I was well and 'normal' most of the time, I was able to largely put them out of my mind.
This pattern more or less continued til about 2002, when things started to improve quite a lot, and I had much less frequent sudden onset attacks and was in hospital much less frequently. I was also better in between attacks and was able to do more, even managing to go to the gym some of the time!
Unfortunately in 2005 things did start to deteriorate again, and my asthma became a lot more 'Type I-ish' with a much poorer baseline and a lack of recovery in between attacks, although I was (and am) still prone to the sudden onset Type II attacks too. I have to say I find this situation a lot harder to deal with than the original problems I had, as I am fairly severely chronically limited in what I can do, and am not able to work, for example. The Type II type attacks also seem harder to deal with and recover from, physically and emotionally, when you are starting from a poorer baseline. I suppose a more positive way to put that would be that anything that you can do to improve your baseline or your general health, even a little bit, may help you to bounce back better from the sudden onset attacks and have longer in between them when you are feeling reasonably okay.
Sorry not to have anything more constructive to offer; I just wanted to share my history a little so that you know you are not alone in these bewildering changes to your pattern of symptoms, although mine has sort of gone the other way around. As I said, I do find it very frustrating not knowing why this has happened, but it does get easier with time to come to terms with it.
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