Another week, another chest infection!

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Wheezyrie Posted: 01-19-2011 10:19 AM

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Hi, I'm new so please be gentle! I had very well controlled asthma for 16 yrs & then in Nov 10 I was rushed into hosp twice. The last visit was for a week. My asthma is now out of control. I have chest infections, sinus infections most weeks & am on high dose of steriods also home nebs & anti-bios. I am so fed up with not being able to breathe properly. Can anyone relate to this? Thanks for reading!

Wheezyrie

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jaynerb replied on 01-19-2011 10:25 AM

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HI

Sorry to hear you are having such a rough time. Have you been given any potential reasons why your asthma has suddenly worsened so much? I don't have any great pearls of wisdom but there is lots of support on this forum and people who have lots of info. I have COPD and Chronic Asthma so I sympathise about how it feels when you are struggling to breathe.

Hope things improve for you soon,

Jayney

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Lorien replied on 01-19-2011 10:36 AM

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Hi Wheeze,

I can certainly relate to what you're going through as, at the moment, I feel as though I've been ill forever.  I guess it'll lift when the weather does but meanwhile it's such a pain isn't it?  I've been ill since just before Christmas and now on my second batch of antibiotics and steroids.

Don't lose heart; it WILL get better. xx

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Ian replied on 01-19-2011 12:15 PM

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Hi, Wheezyrie  Like the Jovian avtar , it is difficult when things go out of balance are there no clues from your doctors to help you know what the trigger for this was and maybe still is. As Lorien said with time you should get back to a better place and better breathing.

hope it is soon

Ian

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Wheezyrie replied on 01-19-2011 1:17 PM

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Thank you everybody, I feel less alone. After posting you I got my referral appt at the hospital for next Weds! I hope they can tell me what is going on & why! I'm glad the rain & fog have gone where I live but now its cold again. Roll on spring!

Wheezyrie

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Ian replied on 01-19-2011 1:35 PM

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Hi, Wheezerie glad you can see some light at the end of the tunnel and hospital is a positive in finding answers.

I will want to see more sunshine before I come out of hibernation, still getting frosts on a morning which take until lunch time to clear. Ticking the days off till warmer weather arrives and trying to do a little indoor exercise so that I am ready for it, taking it slowly do not want to peak to soon lol.

best wishes

Ian

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harry replied on 01-19-2011 1:54 PM

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Hi, Wheezerie, be sure to take notepad and pen for future comparisons of just having you head out of the sand as it were, making benchmarks for exercise etc. which will hopefully push back all the negatives and confusion you may feel.....something to refer to................years later, I just wish I had a log book ho ho 

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Wheezyrie replied on 01-19-2011 2:39 PM

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Thanks Ian & Harry. I have so much pinned on this appt next week but maybe I shoudn't get my hopes up! I have seen so many different Dr's so far & none of them can tell me whats going on! I will go with an open mind. Thanks for your replies & I hope you are both keeping as well as you can. Take care.

Wheezyrie

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Ian replied on 01-19-2011 4:32 PM

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Hi, Wheezyrie , agree with Harry writing your questions down and keeping a note of the answers, is a help in keeping track of the information. Have you got somebody who can sit the appointment with you it is not easy to think of every thing and breathe at the same time when you are not well. Would view doctors appointment as help to improve your health and not all hopes pinned on it in case they have nothing positive to help, this is only a suggestion based on no known facts.

take care

Ian

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Wheezyrie replied on 01-19-2011 7:17 PM

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Ian, I will take notes & my Mum is coming with me now so thats good. She knows all that has been going on & can remind me if I forget to say/ask something. I am just wondering what will they will do to me?! It's the unknown that is scaring me! Thanks for everything.

Wheezyrie

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Ian replied on 01-19-2011 7:31 PM

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Hi, Wheezyrie would have thought that all the testing they could do has been done by now after nearly three months of problems. The BLF have a help line with experienced nurses to speak to if that would help stop you worrying it is 08458 505020 and they should be able to help. (monday to friday 10am to 6pm)

happy to help

Ian

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Wheezyrie replied on 01-19-2011 8:04 PM

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Thanks yes, I will give the helpline a ring. That is a good idea. Take care Ian & thanks again for your time. Hope the frost stays away tomorrow!

Wheezyrie

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Wheezyrie replied on 01-19-2011 8:55 PM

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Hi Jayney, I have finally got my referral to the hosp next week. So far nobody knows why my asthma has worsened. My eldest D had flu back in the Oct half term & although I didn't feel that ill the Dr's think I caught it. I then got a kidney infection & that was it, one weekend I am struggling to breathe & in the back of an ambulance! The asthma has not settled since despite changes in inhalers & lots of steroids & home nebs. The only thing that seems to give me any sort of respite is the ventolin nebs. My asthma nurse gave me some good advice when I saw her, she said try not to go upstairs too often in one day! So helpful! oh well, thank you for your reply & I hope you are coping right now.

Wheezyrie

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Ian replied on 01-19-2011 9:05 PM

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Hi, Wheezyrie I am not sure but you may find some helpful information, by typing "asthma" into the search box at the top right of the forum, well more helpful than do not climb stairs more than you have to anyway.

Ian

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rita replied on 01-19-2011 9:49 PM

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Poor Wheezyrie, you are going through it.  Good idea taking someone with you, and as Harry says, notebook and pen.  If you chat to the nurses on the helpline they may also suggest some questions for your hospital visit.  But don't let them fob you off.

Have to say kids are notorious for bringing all sorts home with them; stray dogs, nits, measles, you name it................ ..........................

Try to keep your chins up and you will get better, just takes time sometimes to find out what's causing it and then find the right medicine to smash it.

Do let us know how you get on

rita

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Wheezyrie replied on 01-20-2011 10:00 AM

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Thanks Ian & Rita. I wish it was as simple as not going upstairs too often! I am a full time carer for my disabled daughter so sitting around is not really an option! All the more reason that I need this sorting out. I slept better last night which was nice as I have been struggling to sleep since Sunday night. The anti-bios must be kicking in! I will ring the nurses later & let you all know how the appt goes next Weds. I appreciate having you all to talk too about this. Thanks for being there.

Wheezyrie

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Ian replied on 01-20-2011 10:27 AM

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Hi, Wheezyrie had not realised that you were a full time carer, is respite care an option while you try and get to a position where you can look after yourself and your daughter, something to discuss with the helpline. Glad to hear that the antibios are starting to help.

Take care

Ian

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Wheezyrie replied on 01-20-2011 11:56 AM

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Ian, we were just turned down for respite care before my latest hospital admission. The professionals working with my daughter & I couldn't believe it. It will have to be looked at again & I can feel another battle coming on! Just dont know if I am strong enough to take it on right now though.

Wheezyrie

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harry replied on 01-20-2011 12:08 PM

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slug is sat staring at the screen with a sinking familiar feeling..where are they when you need them ?

leaving the space brief and blank for incoming, best wishes and hoping for assistance in your plight

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Wheezyrie replied on 01-20-2011 1:07 PM

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Harry, sorry that it sounds familiar to you. I see respite care is making headlines on the news today, again. I feel like the meds are kicking in today but I am so tired. No plans for this afternoon, just sofa warming! Take care.

Wheezyrie

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Ian replied on 01-22-2011 9:24 PM

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Hi, Wheezyrie saw the news article the lengths you have to go to get help is amazing, sofa warming and keeping stress under control sounds like something I could recommend.

take care slowly

Ian

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SusieQ replied on 01-22-2011 11:12 PM

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Hi Wheezyrie

Welcome to the land of dodgy lungs - sounds as though you have been going through the mill lately

Wheezyrie:

The professionals working with my daughter & I couldn't believe it. It will have to be looked at again & I can feel another battle coming on!

Just a thought - can those professionals take up cudgels on your behalf, so that you either do not have to fight or at least do not have to fight on your own.  Plus what about your doc, would he/she weigh in and help?  You need to be in full health to fight that sort of battle and that is something that we do not really have, so need all the help we can get.

Good luck and let us know how you get on.

Sue

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SusieQ replied on 01-22-2011 11:13 PM

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Ian:

sofa warming

That is a speciality of mine and I actually have a PhD in it - so there!  Even better when combined with chatting on the telephone.

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rita replied on 01-22-2011 11:25 PM

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Nah Sue, I got a better one than that, lying in snug warm bed with cuppa tea AND phone.  Must have an FRCS in that one!!

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Lorien replied on 01-22-2011 11:36 PM

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Nah... it has to be lying in bed snug and warm with cuppa tea and phone AND laptop...

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Ian replied on 01-22-2011 11:48 PM

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Have to agree the economy of effort which is do not stand, when you can sit and do not sit when you can lay down, added to the remove all reasons for having to expend further effort by taking phones,tea, lap tops radios etc to this ideal position has a lot going for it.

definitely sold on that

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SusieQ replied on 01-23-2011 12:00 AM

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Ian,

Rita has Brabinger to expend effort on her behalf and I am still looking!!!!!!

Sue

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Wheezyrie replied on 01-23-2011 11:17 AM

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Thanks all, you do make me smile. I am lucky in the fact the professionals I work with do help me as much as they can. I need to gather all my strength to get my evidence together for my next battle. One step at a time eh?

Wheezyrie

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harry replied on 01-23-2011 11:41 AM

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 hi Wheezyrie,

One step at a time eh?

Important that is  Wheezerie and as Ian, says overload is a unwanted side effect.

when I was horizontal, my fingers did the walking on the hospital bed to reinforce mentally exactly how to procede (as in yellow pages addy.)  as it was all too much to take in at the time, what was happening to my life. Legs would not function, ho ho. now I go upstairs and remember the finger walking days with less stress and a smile on my face.

When I phone some of my new extended family, from this community, we can have a great laugh about things, just keep away from anything that makes you feel stressed at all times, delegate, if you can.

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harry replied on 01-23-2011 12:02 PM

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ooohhh........ see how easy it is to forget

get notebook, make it a big one that you cant lose easy.......and put at the top..

step 1

PHONE HELPLINE MONDAY

keep in touch and let us know how you get on...........they've been doin' some really good help and advice,

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Wheezyrie replied on 01-23-2011 3:00 PM

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Thank you Harry. Big notebook at the ready! I will let you know how I get on.

Wheezyrie

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Wheezyrie replied on 01-26-2011 9:45 AM

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Morning all, its the day of my appt with the specialist! I have butterfiles in my tummy but am pleased it is here at last! The weather here is foggy & damp so my lungs are reacting accordingly! Thats a good thing I think as the Dr will be able to see/hear what I am living with. So notepad is packed, all my meds are packed & I have lots of change for the car park! Thanks for all your support so far, hope you all have a nice day.

Wheezyrie

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Lorien replied on 01-26-2011 9:49 AM

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Oh, best wishes for the day, Wheezy, and look forward to the results - things DO get better after this!  They'll aim to stabilize you and reduce your exacerbations.

I was in your shoes about six months ago and today I'm off for a day out in Keswick - shows how much things have improved.

Best wishes!

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Ian replied on 01-26-2011 12:11 PM

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Hi, Wheezyrie wishing the best for your big day as you say it is a good thing that the doctor can see how it is affecting you, just makes it harder to ask your questions and not get stressed out when you are fighting for breath at the same time. Sofa day in order for tomorrow so that you can catch up with today's events .

fingers crossed

Ian

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Wheezyrie replied on 01-26-2011 1:42 PM

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Thanks Ian & yes I will need a sofa day tomorrow! Its a forty mile round trip to the hosp without the walking from the car park & the waiting! I asked all I wanted to & although very chesty I was able to answer his questions, just! Well my CT scan showed severe asthma, which I had kind of guessed. There were no clots though which was the other thing they were worried about! So he has put me on Symbicort 400 (?) along with my usual reliever inhaler & ventolin nebs. I have to go back in two mths for lung function tests & to see how the new inhaler is working. My pharmacist has asked me to go & see him in a weeks time to see how I am getting on. Thanks to all of you for being there, it has helped me so much. I do hope to return the favour one day. Take care my friends.

Wheezyrie

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Ian replied on 01-26-2011 4:13 PM

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Hi, Wheezyrie you have definitely earned a rest day and time to see how you react to Symbicort. Having your condition classified as severe asthma , confirms what your body was telling you was right and it is easier to deal with these things once you know what you are facing though had hoped it was an infection that could be cleared and improve your quality of life. By sharing your experience you are already helping people to deal with similar problems and giving hope that there is light at the end of the tunnel.

enjoy your sofa day,

Ian

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SusieQ replied on 01-26-2011 6:44 PM

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Wheezyrie:

I have lots of change for the car park

Just a though Wheezyrie - can you not acquire a blue badge?  With said badge, I can park in my hospital car park (if I can find a space - but that is another story) for free forever almost.  So difficult parking at hospitals as you have no idea how long you are going to be there.

Would have thought that you would qualify - you can probably download an application form online;  know that I can do that for my local council.

Good luck and hope you got on well today; that people actually listened to you and heard what you were saying.  Do let us know how you got on.

Sue

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Pollyanna replied on 01-26-2011 7:10 PM

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Hi Wheezyrie

Yes do try to get a Blue badge, mine is the best thing that happened to me last year it changed my life.

Paula

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Wheezyrie replied on 01-26-2011 8:13 PM

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Thanks Sue & Paula. You know what I would never have thought of appyling for a blue badge. I will take a look online to see if I can download the form. Can I ask my GP to support me in this or the new specialist? Sorry to ask! Thank you.

Wheezyrie

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SusieQ replied on 01-26-2011 8:21 PM

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I would get the one who is nearest and quickest to do it.  I think that it was my GP in my case. 

As Paula has said, you will never believe the difference it will make to you;  you can park in a lot of places for free, but do read the signs carefully first;  you can park on double yellows for 3 hours, providing you put your disc and clock out (those will both be supplied).

Whilst on the subject of blue badges and things to help, have you applied for Disability Living Allowance?

There is a thread entitled Help and Assistance, which it might be worth reading:

http://forum.lunguk.org/forums/t/223.aspx

Get googling for that blue badge form from your local council and you will not know yourself.

Sue