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3 cancelled respiratory hospital appointments

hoping2improve profile image
13 Replies

Advice if possible please. Back on prednisolone after asthma attack / bronchiectasis flare. Sometimes it is just so difficult to separate the two. Lower lungs tight - fatigue horrendous. Was given Phyllocontin by consultant. 2 tablets made heart pound so agreed I tablet daily. Stopped after month horrible headaches. Currently take Fostair 200/6 , Spiriva Respimat , daily antibiotic , meds for sinuses. Even when well Salbutamol is used daily. Does anyone have any suggestions I can take to my gp please?

So difficult to know what to do.

Thanks

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Bella395 profile image
Bella395

It’s difficult to know what’s going on when you have these two conditions. Commonly it is infection which triggers the asthma so my advice is to collect a good, early morning sample from deep in the lungs and get it off to the hospital ASAP. I find that if it’s asthmatic the flare up will respond to the increased steroid dose fairly quickly. If it is infection the response is poorer.

hoping2improve profile image
hoping2improve in reply to Bella395

Thanks for the thought, currently no sign of infection. Fortunately 3rd day of prednisolone and slight improvement on peak flows

Bella395 profile image
Bella395 in reply to hoping2improve

Good. That sounds asthmatic. However, with bronchiectasis it is sometimes not possible to say whether there is an infection without a culture, the problem being that the presentation can be atypical. Sometimes the sputum doesn’t change colour, there is no temperature. The only way to tell is how you feel and cough/amount of mucous plus other indicators.

FRESHAIR profile image
FRESHAIR

Hi , Good to hear your peak flow is improving . Finish the course and hopefully you will feel much better .

I found the Spriva helpfull . It 's

a hit and miss as to who it suits or not .

Hope you get better soon and feel better as we head into 2019 . Please do not hesitate to contact should you need further help .

hoping2improve profile image
hoping2improve in reply to FRESHAIR

Thanks

Pluto48 profile image
Pluto48

I have found the following have greatly improved my life since a severe hospitalisation.

Ultibro instead of Spiriva ...chest not so dry and tight

Bought my own nebuliser from amazon and take salbutamol in that format when I am getting exacerbations..only use puffer for milder times.

I have a Van air purifier in the living room and will get one for the bedroom when I can afford it..may buy a small one though. This purifier has been a godsend and I cannot describe the relief it provides.

I also have a cleaner once a week purely to vacumn up th dust from carpets etc. That has also been a godsend.

The air you breathe is key if you have COPD , and asthma as well. I have been amazed what registers as bad quality air on my purifier. If I leave my back door open for just a few minutes the outside air enters the filter and it immediately shows the red light! My living is always on low and it keeps the light at green which is good clean air.

I believe dust and pollutants inflame your lungs and make everything get worse.

I take Co Q 10 as well. Cut sugar down, and keep up a good diet and drink bottled water every day. I drink 1/2 litre as soon as I get up.

I have borderline 3/4 status ..very severe. I am just entering the era of ct scans and have already found my emphysema advancing on the scan.

I live alone and sometimes it really is a struggle and when I feel depressed, I switch on my SAD light screen and it perks me up.

Hope you can find something here that helps.

hoping2improve profile image
hoping2improve in reply to Pluto48

Thanks for those tips, I do try to drink water but have never thought about an air purifier

Whitechinchilla profile image
Whitechinchilla in reply to Pluto48

Very interesting posts. Thx.

robert1957 profile image
robert1957

hello please research magnesium deficiency and symptoms of magnesium deficiency there is a very long list of symptoms if you have a deficiency in this very important mineral also research calcification of internal organs arteries joints goodluck

Hi hopingtoimprove.

I am not going to comment on your question as you have had replies from others.

However, bronchiectasis is very complex and we are all different. When you add asthma into the mix it becomes even more complicated and a challenge to treat.

Nobody on this site could tell you whether you are suffering from a bronch exacerbation or an asthma attack or a combination of the two. Only a consultant can do that. As you have probably discovered, GPs are not trained well enough to be able to do it either.

So I have to ask why oh why are you tolerating having three appointments cancelled?

This is done by the hospital appointments office for the convenience of the schedule which they have on the computer. Unless you break the cycle they will just continue to do it.

I strongly suggest that as soon as you can, you call your consultant’s secretary. Tell them what has happened and that you feel very unwell and need to see the consultant asap or before! They have charge of the concultant and clinic diary and can fit you in to a cancellation. Make sure that the consultant writes to your GP with a future plan and that a copy comes to you from the consultant.

We really do have to be proactive in our own interests and vociferous in sourcing the treatment which we need.

Good luck

hoping2improve profile image
hoping2improve in reply to

Thanks Littlepom. As helpful as ever. Whole clinics have been cancelled, not just my appointment. Saw a locum consultant early September. But you're right do need to be more proactive . Believe from what previous consultant has said - asthma is severe and not well controlled. Have left message with consultant secretary x

in reply to hoping2improve

Great. And keep nagging!

Whitechinchilla profile image
Whitechinchilla

Well said.

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