Breathlessness coming back

[Hollyhockhattie]

Since coming out of hospital 4 weeks ago following 9 days of iv tazocin and all the other treatments I have felt on top of the world. Climbing stairs, and doing everything without feeling puffed. It;s been brilliant. Since yesterday I have noticed my breathing becoming laboured again. I've also noticed myself becoming very sleepy and not really wanting to do much. I don't feel unwell This is so depressing. Is there anything I can do to combat this or am I doomed to breathlessness for ever or untill I might need hospitalisation again. I'm drinking water, taking my meds , walking and doing my breathing exercises. can the GP prescribe me nebulisers if I buy the machine and will this help. Please advise. ( Bronchiectasis) Holly.

[appyalison]

Hi holly, so sorry you are breathless again. I can't help so i hope someone will be along soon who can. I would ring the helpline - press right top large balloon for number. It must be really disappointing for you. Hope you feel better really soon. Alison

[Hollyhockhattie in reply to appyalison]

Thank you appyalison. Appreciate you and your message. Best wishes. Holly.x

[Hidden]

Hi Holly, It is so depressing to start being breathless again. My husband suffers with COPD - and has days which are much worse than others for no particular reason. I say no reason but actually he is very much affected by air pressure, temperature and humidity. So today a bit colder with lots of rain here is not a good day. Having said that it could be an infection looming. Don't worry yourself - please go back to your Doctor and ask. (PS a phone call to the helpline first might give you good advise before you ring your Doctor). Hope you start to feel much less breathless. Lots of love TAD xx

[Hollyhockhattie in reply to Hidden]

Hi TAD, Thanks for being understanding. ( I had been feeling cured)! I'm sure that air pressure, temperature and humidity all play a big part as well. I like the warm, cool, evenings best. Two weeks ago I went along to the local college with my daughter while she enrolled for a course. I can't tell you how many times we went up and down the stairs to different departments. Then we walked around the campus to find the nursery and I was taking care of my 3 year old twin grandsons as well. I felt elated as I wasn't struggling for breath...I was breathing perfectly normally. I was so happy and appreciative of being able to breathe normally so it really hit me when I noticed the panting again. Even when I was making my bed yesterday I could feel my heart racing . It's so disappointing but I do need to understand that I have this condition.

Bless you

Holly.x

[Hidden]

I do pursed lip breathing when I am breathless it helps a lot. Don't push yourself too hard Try to remember life is not a competition, slow down and relax. I am sure you will feel better. This illness takes a while to come to terms with.

[Hollyhockhattie in reply to Hidden]

Thank you bipajjanaka, I know you are right ( sigh) . Holly

[Hidden]

Sorry to hear that you feel you have gone backwards.With these breathing illnesses,one does seem to have good days & bad.Like bipajanka,I find that pursed lip breathing(with shoulders down!) is a great help.

Do hope you feel better soon xx

[Hollyhockhattie in reply to Hidden]

Thank you Wendells. I will try the pursed lip breathing ( with shoulders down).

Best wishes, Holly.

[Hidden]

Hi Holly, I live with breathlessness each and every day, but it doesn't stop me doing things, in fact I know I would go down hill very quickly if I stopped doing things because I was tired or I get breathless every time I move.

If you've not done PR yet ask your doctor to refer you. Previous blog on PR:

healthunlocked.com/blf/post...

After the PR course its important to keep the exercise going each and every day in order to help avoid repeated de conditioning. Keeping active and following the recommendations given on the PR course, is part of keeping our lungs and breathing in as good condition as we can, in addition it helps keep our immune system boosted, our physical body more mobile, avoiding gaining excess weight etc etc.

The understanding I have on the nebulizer situation (this came from the local community matron) is nebulizer's are mainly used to help people who are having an exacerbation of symptoms, its something that should not be overused. Benefit gained is when none of the other medicines work on their own and an exacerbation of symptoms occurs regularly. You need to first establish if your doctor or consultant feels you need to nebulize as it is them who will authorize the prescribed dose etc.

Good Luck with it all, hope you find things more manageable soon.

Best wishes BC

[Hollyhockhattie in reply to Hidden]

Thank you BC. I appreciate everything that you have said. As I have been breathless for well over the past year I was just enjoying not being breathless and the sheer joy at walking to the shops without feeling that I won't make it has been great. I was disappointed when I noticed that I had started to pant again. I will ask to be referred for the PR course.

Holly.

[cofdrop-UK]

Hi Holly

Sorry you're breathing is not so good again. I am assuming you have inhalers in the form of bronchodilators. As well as using an inhaler it is pretty common for bronchiectatics to use a nebuliser for bronchodilators, often we use them for nebbing saline following dilators. Nebulisers are normally arranged by your consultant and would then be loaned by and maintained annually by your hospital, your GP would then prescribe the necessary medication.

If you are thinking of buying one independently you might want to discuss medication with your GP as he may not wish to prescribe the meds if your consultant has not considered a nebuliser necessary.

Bronchs may also sometimes be put on a nebbed antibiotic - this will need a separate piece of kit along with a filter which fits onto the neb they supply you with.

If I were you hun I would ask your consultant's opinion.

Good luck

cx

[Hollyhockhattie in reply to cofdrop-UK]

Thanks c. I'm probably clutching at straws. I've been going through all the treatment that I was given in hospital and nebulisers several times a day was one of them. I only have a ventolin inhaler actually prescribed by the hospital however my GP has discontinued it which has also upset me. I have been using that for the last year for the increasing shortness of breath that I had been experiencing before I was diagnosed and ended up in hospital. I have the rescue meds which I don't need at the moment and i'm taking regular carbocysteine. I was enjoying not being short of breath for the first time in a year ( I felt full of the joys of spring)

I have my follow up at the hospital this Wednesday so will talk to the consultant.

Bless you

Holly.x

[weeannie60 in reply to Hollyhockhattie]

hi holly id speak to consultant i did and was given an nebuliser for the house i use it morn and night but when things get bad i use it 4 times a day i have copd and emphesema and ipf but i got the nebuliser for the copd have had it a few year now so hope you get on ok at the hosp take care xx anna

[Hollyhockhattie in reply to weeannie60]

Thank you anna, I will mention it to the consultant. I just hope that my GP takes notice because he ignored completely my discharge meds and wrote a prescription for what he thought I should be on..... not that he had ever seen me before as he is one of a family of GP's that share the same practice.. Holly. x

[cofdrop-UK in reply to Hollyhockhattie]

In my experience GPs look at the meds on discharge notes as those you were given whilst in an acute situation. Hospitals don't always follow up with a discharge letter.

However when you see your consultant on Wednesday he/she should communicate with your GP with a care plan and your GP should follow your cons wishes. If they don't you may want to think of changing GP.

love cx

[Hidden]

For nebilising meds doc needs to know you are responsible patient ...they scared of for example patient using for few times in a day rather than going to hospital. So work out what reassurance your doc needs from you. Good luck. X