Build Me Up

Sat here pretending to work, and cannot get a thought out of my head, Botox? or other fillers, I wonder if anyone is investigating whether they could be used to 'plug' the holes in my lungs?

My mother passed away from emphysema related heart attack 30 years ago, I have the disease now and as far as I can see there have been no changes in the treatment and management of the condition in all these years, are we the forgotten ones?

16 Replies

  • My father also died from emphysema his heart just gave up, but I disagree that the treatment is still the same, apart from his doctor looking after him and someone giving him an audio tape to listen to so he could try and control his breathing he had no other help at all. I never remember him having xrays or going to see a consultant, it was just his doctor and A&E when he was really poorly.

    I thank god for our Respiratory Nurses the team are wonderful and I know if i am particularly unwell I only have to phone them for help, and where would I be without the PR who have helped me get fitter and learn how to excercise.

    Finally Breathe Easy where we can all get together and support each other, like on here.

    polly xx

  • I fully support your praise for the Respiritory Nurse. They do lots for me and are there whenever I need them. A wonderful bunch of lads and lasses.


  • My husband has had COPD for about 8 years and in the beginning we were just given a diagnosis, inhalers and off we went home! However he had a couple of nasty infections a couple of years ago and I was amazed at the health service. My sister told me we should be asking for a referral to the respiratory team - they are just fantastic. The nurses visited him at home, checked his meds, made a referral to Pulmonary Rehab and life changed. The pulmonary rehab course can be life changing. From a personal point of view I think as a COPD sufferer and carer you have to be a little more proactive. If you are doing ok on your medications and having a good quality of life - then possibly the Doctors think there is no intervention required. The local Breath Easy Group has been great for my husband - to know there are other sufferers. I hope you can continue to enjoy life and there is help, support and medication available to slow down the progression and of course there is the helpline here. Good Luck TAD xx

  • In a word "yes"

  • Have Never Seen Out Like That As Far As Botox Go's .... A Think A Coke Can Would Do More ... But Seriously BLF Did Story On Here About Emphysema Lung Fillers They Have Been Working On

    Search BLF Blogs By Jo :)

  • dont know what "Botox" or lung fillers are ?

  • thanks daz clears my wondering :) but not my lung issues ........... thanks for your reply bless you

  • I cast no aspersions on nurses and carers, all I am saying is that the medications have not changed, nor can I find many trials or investigation into the disease. If you compare us with heart, aids or cancer sufferers, billions are spent in clinical research, trials and public awareness.

    In an aging population COPD will inevitably take over as one of the major killers, if it isn't already. My Mother, as was I was sent home with an inhaler and told to keep away from smoke and anyone with a cold or flu, thats it?

  • hi there doing trials at m.e,u. its a building across from wythenshawe hoz,u send them an email and will get bak to u,take care

  • also theres 2 new inhalers out now,1 seebri 2 elkira guneair my gp nurse jusy put me on elkira twice a day its to try get ur lung function up,also i have seritide twice day an blue ventolin,im copd moderate,i dont no wat illness u have but if that info is any use worth a try take care

  • i wasnt given any info either just 2 inhalers and a bye nice arnt they anyrdi have a new gp now hes ok not ignorant.i have learned loads of the ppl on hear

  • Thanks so much for your comments caroll, I have emphysema dont really know how bad, doc said 60% loss in both lungs but my O2 levels are over 92, I try to question them but they just say 'noone really knows' initially specialist said 3 years max which really upset me. I am taking spiriva once a day and serentide twice a day, I also self medicate on blue ventolin if I know I am going to do something strenuous xx keep well!

  • Hi Kad, if you have an overall 40% lung function, then that really is not that bad. For your specialist to say 3 years max is dreadful. I functioned practically normally on around 30% for a very long time. I've had emphysema for practically 20 years now. I am now down to around 20% and life isn't so easy any more but it's taken many years to get so low. My sats are normally around 95% but drop to the 80's on exertion. I'm not suitable for oxygen apparently, may people aren't. There are quite a lot of drugs out there, I use symbicort, spireva, uniphyllin tablets and carbocisteine (for mucus). I also have ventolin but find it's of little use to me. As long as you aren't smoking any more, your 40% lung function should progress very slowly and you will have many "good" years ahead of you yet. Libby

  • hi since ive been on elkira gunuair wat an inprovement twice a day with seritide twice a day,dont need blue inhaler like b 4,ask ur gp about them ,i asked nurse why dont they tell us wen new things have been trialled out and pasted got no reply,the elkira is to get your lung function up ,take care

  • Thank you so much for your comments, I must say I have been so depressed Libby, when someone says 60% loss and 3 years you wonder what hit you, I must say the specialist does not impress me very much, he seems bored and distracted, but I guess he has to treat this condition more and more often now so its becoming parrot fashion? I tried to tell myself he was just trying to scare the hell out of me, well he did succeed in that!

    To hear that I can function for many years on 40% has boosted me immensely, THANK YOU xx

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