Emphsema - all is not lost ...

[Dedee26]

Finding this site has been another wee Godsend for me. I don't have the knowledge or access to resources as most others on this site because I'm in NZ but I grab whatever I can utilise to help me live a supported, better informed and empowered life. I presented to my doctor some 15-18mths ago informing him that I suspected I had emphsema. Since that time i have struggled with increased severity of symptoms, mainly related to my breathing and the reliance of Respigen in order to complete simple tasks such as hanging the washing, carrying a bag of shopping. Vacuuming pretty much outa the question. My biggest issue however has been my quality of care. I don't know if the problem is restricted to me or whether it's a wider problem but I suspect my doctor has fallen into the habit of addressing any health issue I present with from a purely pharmacological perspective. The medical centre I attend has an unwritten policy of limiting consultations to a 10 minute time frame in order to get through as many patients as possible throughout the course of the day. In fairness to my doctor, under that system you wouldn't have time to do much else expect complete any necessary tests, diagnosis and write a prescription. Next patient please .... My concern is that while that approach may suit certain complaints it's not sufficient when addressing serious and on-going illnesses that require a more empathetic, informative and collective approach so that the patient is knowledgable about their condition and can play an active part in their own treatment. It was only after choosing to consult with another doctor today that I learnt the actual stage and severity of my emphsema. My doctor never once thought to inform me. He never offered any information on what emphsema was or what lifestyle choices might improve my condition. The extent of treatment has always and only been restricted to what medication to take and how to take it. So !!! Phew. All I can say is thanks for listening to me off load that ear full. I truly appreciate the ability to share, listen and learn and hope that I might be able to contribute to discussions in a way that might be beneficial to others as well. Cheers and thanks 😊

[stone-UK]

Hi

Welcome to the forum.

Although they don’t have a forum, Australia Lung Foundation Do a interesting newsletter.

You can download previous copies from the news media section on the main web sight. lungfoundation.com.au/news-...

This months is about COPD, and the future of stem cell treatment, very interesting.

lungfoundation.com.au/wp-co...

[Dedee26 in reply to stone-UK]

Yes I might just take you up on that suggestion. I've read a little bit about the developments in stem cell treatment but I have assumed it's something I wouldn't ever seriously consider due to the sheer cost involved. That being the case, much like the issue of lung transplant or lung reduction surgery, I tend to avoid researching such topics do as not to set myself up for dissapointment. The transplants I know are offered through the public health system but you still have to undergo a 'priority' assessment and without going into detail I would guess (actually I'd put money on it) that I would be low on the 'priority' list.

[mrsmummy]

Welcome to the forum.

[Carnival567]

It can be much the same here in U.K. as doctors' appointments are limited to 10 minutes and you have to book a double appointment if you want more time. It is supposed to be one problem at a time but how can it be for those of us who have several conditions which interact with each other, or one chronic condition which may be affected quite unexpectedly by something else. Bring back doctors who listen! There are not as many as there should be.

[Dedee26 in reply to Carnival567]

Hmmm that's interesting but tell me something - did your doctor atleast explain what the heck emphsema was cos any info I've encountered has been through my own efforts on the Internet. I mean he did tests but didn't inform me of the results. I didn't no if I was deemed early stage, whether my spirometer results were good, bad or indifferent. Consultations were strictly - here's a script for this, this should help your breathing and off I'd go. None the bloody wiser about a damned thing. Surely that's not common practice. Every forum I've encountered ALL of the participants have talked about their FV whatever or their something being 61% ... I mean it was bloody Jspanese to me. I was never informed of any results or readings like them. Hacked me off cos I didn't feel I was knowledgeable enough about my own condition to be able to participate. Now I don't care what anyone says - it's not acceptable for a doctor to not even bother to explain your diagnosis or to give you an indication of the severity. In any event - I finally reached my limits and he's down the road haha. Least I've FINALLY found people who have genuine empathy, who listen, offer advice and who don't expect a payment just because they've got a 'Dr' in front of their name 🤑

Cheers. Thanks for your input I appreciate it big time 😘

[sassy59]

Welcome to you Deedee. Xxx

[knitter]

Hi Deedee, and welcome.I was diagnosed as being asthmatic and given two inhalers , in and out of hospital, I was referred to an asthma nurse, but I didn't know what questions to ask even though I had three asthmatic children. Maybe one reason was that a GP years ago said that my daughters cough was down to my anxiety...' Nothing wrong with the child.....its you'

Later I was told I had COPD by a nurse after a Spirometry test....that was all. I remember walking out to the carpark with my thoughts whirling.

It was the BLF leaflets that were on display in my local hospital that were my main source of information. Then I joined a Breathe Easy group, and through a newsletter found this forum.

[Dedee26 in reply to knitter]

Yep I hear what you're saying and you should've been given more info about your asthma by the sounds of it but your comment in regards to being told of your emphsema by a nurse. Yeah okay but I would then expect you to have made an appointment with a qualified doctor who administers the appropriate tests and is responsible for determining your treatment, subsequent diagnosis and the resulting discussions about severity and pharmaceutical treatment options - not the nurse. Was your experience with your doctor anymore helpful ? If not could you elaborate ? I'm genuinely interested to know whether this is common practise and if so then one of two things is occurring. Either my expectations of a doctors responsibilities to his patients is unrealistic OR the medical profession needs a bloody good shake up !!

[Lilian226]

Nice to meet you Dedee, My doctor is a bit like yours, no advise whatsoever, just handed a prescriptions for antibiotics and steroids. I was diagnosed with COPD and was completely in the dark as to how to manage it. Over the years it got worse and then a year ago I joined this forum and I have learned so much and I am so grateful to the members and their knowledge. You will get that same help and advise. You will find out how to manage your COPD. Talk again. Lilian xxxxx

[Dedee26 in reply to Lilian226]

You are absolutely right luv. Bugger relying on some over stressed GP for advice and support dealing with this thing. So much for 'bed side manner', I get the impression that if I dropped dead tomorrow it'd be like 'another one bites the dust to him' and a simple "next patient please". This is a family doctor whom I've known for nearly 20yrs !! Sad but there you go. I'm just "SO" grateful to have found some support through this forum and to finally feel that maybe I don't have to battle through this thing thinking no one gives a damn. Thanks for your comments and support. Much, much, muchly appreciated 😊✌🏽️

[Lilian226 in reply to Dedee26]

You're very welcome. xxxxx Lilian

[Ergendl]

Hi, Deedee, and welcome. I think my GP only has 6 minute appointments, and I usually only get to see the one no-one else wants to see - as senior partner he's actually very good, but tells it straight. However, he didn't give me all the details of my COPD: instead he referred me to the practice Respiratory Nurse specialist who looks after my routine lung care. The present one is very good and has the time to give me all the information I need. (The first one had a nice but dim approach, probably because her specialism was diabetes and she was jus helping out.)

[Dedalus]

Hello and welcome Dedee x