I have severe chronic asthma going on for nearly two years. I find myself increasing tired of dealing with asthma, doctors, treatments, record keeping, disability and all of the other bits that go along with asthma that simply refuses to bow to the current set of medicines and techniques for treating asthma.
I'm finding my latest exacerbation especially hard to deal with emotionally. I had six weeks of relatively good control. It was the first time in ages. When I feel good it seems almost impossible that I could ever have felt so bad before. I was so hoping that I was seeing the end of this long period of out of control asthma. Then came September and my lungs went back to school along with the children. I'm about to start Xolair - if it makes a difference that will be wonderful. But if it doesn't , I feel I'll be in for the long haul.
I am wondering how others with severe chronic asthma manage. Do you get tired of nursing yourself? Of endless rounds of inhaler puffs, nebulizer treatments, medication schedules, doctors who want to reinvent the diagnostic wheel, doctors who are sure every other got it wrong, the do I go in or not decision, repeat hospitalizations (hospitalized three times for hydrocortisone treatment in the last six months), the disappointment when the latest taper attempt ends in a splat, and so on?
Sorry to hear that you have been so poorly ?. I have similar trouble been hospitalized this year like 30-40 times and this week before getting discharged got called a troublemaker!? All I keep trying to keep my spirits up is saying that there are others much worse than me and by sometimes being able to do something I like ie visit my family or go shopping (maybe once every 2 month) but just trying to take each day as it is if I have to go then take everything that might make me feel a bit better like a book or tablet to play games etc
Once i rang the asthma uk helpline and they suggessted try to talk to the british lung foundation and anxiety uk about living with a long term lung condition sometimes it helps but sometimes people just tell me that theres nothing they can do to help me.
Hope this helps
Take care
???
I have severe chronic asthma going on for nearly two years. I find myself increasing tired of dealing with asthma, doctors, treatments, record keeping, disability and all of the other bits that go along with asthma that simply refuses to bow to the current set of medicines and techniques for treating asthma.
I'm finding my latest exacerbation especially hard to deal with emotionally. I had six weeks of relatively good control. It was the first time in ages. When I feel good it seems almost impossible that I could ever have felt so bad before. I was so hoping that I was seeing the end of this long period of out of control asthma. Then came September and my lungs went back to school along with the children. I'm about to start Xolair - if it makes a difference that will be wonderful. But if it doesn't , I feel I'll be in for the long haul.
I am wondering how others with severe chronic asthma manage. Do you get tired of nursing yourself? Of endless rounds of inhaler puffs, nebulizer treatments, medication schedules, doctors who want to reinvent the diagnostic wheel, doctors who are sure every other got it wrong, the do I go in or not decision, repeat hospitalizations (hospitalized three times for hydrocortisone treatment in the last six months), the disappointment when the latest taper attempt ends in a splat, and so on?
How do you keep your spirits and energy up?
The way to keep your energy up is to acquire more oxygen if you can. I always keep my spirits up by never feeling that I am more ill than other people. I was selling newspapers in some hospital wards aged nine and I saw people suffering from all sorts of dreadful diseases. I also went to an open day at a home for children with Polio when I was 11-years-old and saw lots of nasty disability. Since those days, I have controlled asthma and have never forgotten that there are always others worse off than I am. I have had eight heart attacks and two strokes plus a tumour in my inner ear. I think life is sweet in any form but it all depends on our attitudes and outlooks. I currently take twelve tablets daily and know not what any of them are for. This load of medication probably costs the NHS hundreds of pounds each month and I am only one such burden upon the taxpayer among millions. I think the tablets are responsible for some side effects that make me feel quite dreadful almost every day. However, I cannot complain because I am still here thanks to a brilliant surgeon who removed my inner ear tumour nearly twenty years ago and others that inserted two stents into my heart this year. My advice is always to stay away from concentrations of polluted air.
Afternoon Beth,
i don't know how old you are but I am just recently retired as a nurse specialist in respiratory disease with children & young people & I saw many mothers & fathers as well as youngsters who often felt like you when they first came to see our team.
If you are a chronic asthmatic, I would hope that you are seen by a specialist team in a tertiary environment & the fact you are starting on Omalizumab (Zolair), I would guess you are. However I do realise that the adult world is different to my paediatric world of nursing & medicine.
I don't want to patronise your but all I would say is ensure you are taking your inhalers as they should be (you would be surprised how many people aren't as they are not educated by their professional or not correctly) as this can make a real difference (my mantra is always TAKE THEM, TAKE THEM PROPERLY, TAKE THEM REGULARLY), ALWAY use a spacer and preferably a large volume one as you are so poorly, for your inhaled steroid, use your asthma management plan that EVERY asthmatic needs, have a good conversations with your nurse specialist & get to trust them to see if there is anything that is being missed by either of you, and lastly, Omalizumab is a very good drug but sometimes take time to kick in so be patient & I really hope it works for you as it did for many of my old patients & it really changed the lives of many.
• in reply to
Afternoon Beth,
i don't know how old you are but I am just recently retired as a nurse specialist in respiratory disease with children & young people & I saw many mothers & fathers as well as youngsters who often felt like you when they first came to see our team.
If you are a chronic asthmatic, I would hope that you are seen by a specialist team in a tertiary environment & the fact you are starting on Omalizumab (Zolair), I would guess you are. However I do realise that the adult world is different to my paediatric world of nursing & medicine.
I don't want to patronise your but all I would say is ensure you are taking your inhalers as they should be (you would be surprised how many people aren't as they are not educated by their professional or not correctly) as this can make a real difference (my mantra is always TAKE THEM, TAKE THEM PROPERLY, TAKE THEM REGULARLY), ALWAY use a spacer and preferably a large volume one as you are so poorly, for your inhaled steroid, use your asthma management plan that EVERY asthmatic needs, have a good conversations with your nurse specialist & get to trust them to see if there is anything that is being missed by either of you, and lastly, Omalizumab is a very good drug but sometimes take time to kick in so be patient & I really hope it works for you as it did for many of my old patients & it really changed the lives of many.
Thank-you for the encouragement about Xolair and the wait and see reminder - I'm so frustrated that I'm having trouble believing it will make a difference - it helps for people to say it does. And also your sharing that you've seen people/famlies with a similar set of medical/self-nursing fatigue. Knowing this is normal and I'm not alone helps a bit. Gives me a kind of the we're all in this together slogging away good feeling.
GP was quite insistent early on that he needed the advice of a cons. My asthma tends to Type I brittle - huge variations in symptom levels and peak flow on and off through the day. Just today PF has gone from 460 down to 170 and post neb back up to 450. Depending on how my FEV1 looks, cons seems me anywhere from every week to every month - but I think it has averaged out to every 1-3 weeks. Overall i think my care is good - a serious effort was made early on to find an alternative explanation and exacerbating causes. Perhaps this is one small advantage to having atypical asthma - people look a lot harder for some other explanation. ( I don't usually wheeze - mostly I am short of breath or cough or feel I am pushing weights just to move air. )
No worries about being patronizing about meds. Your TAKE EM TAKE EM TAKE EM enthusiasm made me smile! It never hurts to be reminded to be diligent about inhalers. I generally am quite good - the last thing I want is more medicine because my doctor thinks I'm taking everything ss prescribed and am in fact not. Normally if i miss doses it is due to fatigue - push myself too much during the day and then crash and am sound asleep. But more recently it is due to my just being tired of all the self-nursing. I can sometimes be absent minded, so organization is important. I used to be really good about counting out meds for the next day and then writing down when I'd taken things so I can keep track. But recently have gotten sloppy about the organizational side. This translates into me delaying doses, not writing things down and then forgetting and skipping doses.
As for age - I happen to be 49 - but also of the opinion we can all have our adolescent moments here and there.
Oh Beth, I know exactly where you are coming from. I have been asthmatic since I was 3 years old. I am now 62.My asthma has always been difficult to control but for the last 12yrs or so it has rapidly got much worse. I too am fed up spending most of my time medicating myself trying to keep on top of my drug supply,attending hospital clinic only to be told there is very little else that can be done.Like you I am on theophyllin & montelukast,I also have a Fostair inhaler and a Qvar inhaler (and ventolin of course) on a maintainence dose of 20mg preds,which I have to bump up to 40mg when breathing gets really bad,and 2 nebs a day of Ipraropium and salbutamol ( I was on 6 a day when I came out of hospital in June! I am now trying to manage on 2). And just to add to all that,I developed Diabetes 3 yrs ago as a result of the huge amunts of steroids I have to take,so I am on medication for that and have to inject 4 times a day.
As you can imagine, my social life is virtually non existant!
It is very hard to stay positive somedays and I often get days when I just wish I could stop breathing for a while to get some rest from the effort it takes!
Good luck Beth,I hope things will improve for you.
beth and Jane, just dispensing sympathetic hugs to both of you. I don't have such severe and dramatic asthma as either of you, but still a struggle to control at the moment, looking like (in my reading of the internet) also maybe some fixed airway issues after last year's flare.
Good luck to you both.
yeeee Gods folk!
I do wish I could see you all to see if I can help
As well as take them. take them regularly & take them properly, I would also say is there any thing else going on i.e. infection
Have you had bronchoscopes &/or CT's?
Do you get better with antibiotics?
I do know of a consultant who said they should be give as well
Hope you both find a good nurse or doctor who can sort you out
• in reply to
yeeee Gods folk!
I do wish I could see you all to see if I can help
As well as take them. take them regularly & take them properly, I would also say is there any thing else going on i.e. infection
Have you had bronchoscopes &/or CT's?
Do you get better with antibiotics?
I do know of a consultant who said they should be give as well
Hope you both find a good nurse or doctor who can sort you out
My asthma has been through a long process to rule out ""not asthma"" causes and identify aggravating factors. we have a pretty good idea of triggers, patterns, etc, etc. I think I'm just in that unfortunate group that qualifies as ""severe asthma"" rather than difficult asthma. Based on what tests have been done, I fit the ATS/ERS criteria.
But even asthma that is hard to control can (I hope) achieve at least short term control from time to time.
Unfortunately in Israel there is no institution of an asthma nurse - it would be lovely if there was. What happens instead is that I go to my GP's practice during early morning walk-in hours if I have a bad time and need review. My GP happens to be very good at helping me manage my asthma. Many of my few weeks of relatively good control have been due to suggestions that my GP has made.
An asthma nurse would be nice because (a) it is a burden on my GP (b) he isn't always available. (c) there would be single point of contact who knew my history and could help head off problems before they became very serious.
On my last two walk-in visits I endsd up with doctors who didn't know me. I usually give such doctors a clinical summary signed by my GP but we were in the process of updating it, so I didn't have it with me. My asthma is atypical in a number of ways, so doctors new to me don't always take on board that it really is asthma. Needless to say it did not go well. Neither doctor really took on board the seriousness of the situation.
Fortunately no short-term harm was done, but their failure to see that I was getting exacerbations on top of exacerbations, didn't do much to head off increasingly worse exacerbations. I'm currently in hospital for IV treatment and will probably end up being in for a week due to an attempt to take me off IV steroids before things had really settled. No one has a crystal ball, but I think it likely that early action might have prevented things from getting to the point that I needed to be in hospital for so long.
Having a dedicated asthma nurse who knew my history and was available lead to more consistent care I think. Such a person would know my history and be in a better position to give advice that would keep little problems from growing into entrenched problems that can only be solved in hospital.
I was the first under 12 to start xoliar as it wasnt licensed for over 12's and i was 11 at the time. It was a great medicine and it kept me stablish for 5 years. Hospital admissions were only needed if i developed a cold of some type. But sadly as i grew the medication wasnt given the correct effect so the consultant decided to remove me from it. But apart from that it changed my life dramatically.
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