Words of hope for the newly diagnosed

[MoyB]

I was diagnosed with asthma in 2001, then COPD in about 2010. About 4 years later, I was diagnosed with Bronchiectasis.

Recently, my diagnosis has changed to Chronic Asthma with mild fixed airways disease and Bronchiectasis.

I am writing this to let you know that such diagnoses don't mean everything is going to go downhill! There is hope for the future!

At first, I was in and out of hospital a few times with pneumonia. In fact, it was the first time I went in that I came out with a diagnosis of COPD. No one spoke to me about it. It was just written on my discharge letter. My GP missed it and when I pointed it out to him during a visit for something else, he said, 'But you don't have COPD.' Thankfully, after reading the letter again, he arranged a spirometry test which confirmed it. Unfortunately, I still didn't get the right treatment then and things got worse.

I was very ill when first diagnosed, having been somewhat neglected by the health system ie handed prescriptions for antibiotics time and time again without any suggestion of referral to a consultant. Finally, when I could hardly walk accross a road due to lack of breath, I insisted on being referred to a private consultant and was fortunate to meet one of the good ones! AFter my first visit, he transferred me to his NHS list so that I could have a CT scan and other breathing tests.

My consultant's care - and I mean 'care' - along with advice from the local Breathe Easy group have saved me!

My GP, lovely man though he was, just did not know how to treat me. My consultant has offered, care, advice and medication. In addition, I have twice been referred to the Pulmonary Rehab groups and these have been life changing too. (My GP told me that they didn't exist in our area - this was disproved by a Respiratory Physio attending Breathe Easy to talk about the group that she was running!)

Now, I am living a full life again!

I still can't walk far or fast, but I can do so much more now than I thought I would manage ever again. I now have a mobility scooter that has given me back some independence and I scoot all over the place, visiting friends, attending WI and Art groups, plus all the 'add ons' that come with those two groups. I'm not home a lot these days! My days of sitting on the sofa all day feeling sorry for myself are well and truly over!

Thanks to the right treatment, I feel WELL! Or at least, as well - or better - than most of my friends of a similar age. (I'm 72).

So if you are newly diagnosed and feel that your life is going to be crap from now on, think again! It may take time but there is every possibility that, with the right care and treatment, you can feel much better than you do now. Don't put up with being fobbed off by GPs who don't know enough about lung conditions, though. Make a noise! If your condition is out of control, as mine was, insist on a referral to a consultant. Don't take 'no' for an answer!

Keep as active as you can manage and find things you can still enjoy.

Most importantly, DON'T GIVE UP! Things CAN improve!

xx Moy

[Hidden]

Well said MoyB!

[MoyB in reply to Hidden]

Thank you, Littlepom. On re-reading my post, I see that I neglected to mention the Forum which has been a great support to me, especially in the early days. Your posts helped me to realise that the five year life expectancy for people with bronchiectasis that you read about on Google is utter rubbish! I'm pleased to say that, like you, I've passed that supposed milestone!

Thank you for all your helpful posts. I hope things are going ok for you these days.

xx Moy

[Stratos20 in reply to MoyB]

I was diagnosed with Bronchiectasis in 1955 at the age of 5 years old. Whooping cough was the culprit. The doctor at Birmingham Children’s Hospital said he’d never seen it so bad in one so young. I had a two lobe lobectomy and my parents were told I probably wouldn’t live past 7 years old. At 8 years old they were told I might make early teens. I’m nearly 74 now and I’m doing ok considering. I count my blessings. Keep positive everyone. The supposed 5 year life expectancy is utter rubbish Best wishes to you all, Diane 😘

[sassy59]

An excellent, inspirational post dear Moy. Well said. Xxx🩷

[peege]

Very inspirational for new and old members alike Moy 😇

[leo60]

Exactly Moy! Well said and well done, it's not easy fighting for proper treatment. xx

[MoyB in reply to leo60]

I think it's helpful if people are informed by others about what treatments are out there. For example, I didn't know about Pulmonary Rehab at first and my GP clearly thought it was a figment of my imagination when I asked if there was a group I could be referred to. Hearing from a Physio at the Breathe Easy group and also hearing the experiences of others on here gave me the confidence to return to my GP with the info I needed to be referred.

It's much easier to fight if you know what you're fighting for, isn't it?

xx Moy

[leo60 in reply to MoyB]

You are absolutely right Moy! I have often asked questions on here to be “in the know” before I speak to a nurse or doctor about something. Forewarned is forearmed 😊 xx

[MoyB in reply to leo60]

Absolutely! xx Moy

[tomc]

👍❤️

[beech]

What a lovely positive post.

Many of us have found this forum and come here in despair at the brick walls we’ve run into in terms of getting good information, medications and care for our own peculiarities.

And instead of continuing to feel alone we find people who encourage and reassure us when we’ve felt that a bleak future is ahead of us.

I wish you all the best in continuing your life of good quality (even with a few drawbacks!), and thanks for your post.

[MoyB in reply to beech]

Thanks for your lovely reply! This Forum, along with good care and the Breathe Easy group stopped my decline into depression and lifted my high enough to start living again. Without all the lovely people on here telling us that there is still life to be lived, I might not have made it.

xx Moy

[Lol1944]

Award for best post of the year

[MoyB in reply to Lol1944]

Thank you! xx Moy

[Mellywelly]

I take my hat off to you MoyB, not only are you feeling good about life now but your advising others also not to give up. I also have a nice doctor but got very frustrated with not being treated properly and asked the doctors receptionist which doctor is the pulmonary specialist at my surgery just to be told (oh their all pretty good dear) honestly felt like screaming at her. It is frustrating and I believe there are so many people in dire need out there that are just being fobbed off. Push, push and push again to make yourself heard. It's the only way. Well done for telling your story, I am sure it will help a lot of sufferers out there to strive to get the help that they need. Your an inspiration 😉😁

[MoyB in reply to Mellywelly]

I'm sorry you had that response from your surgery but, sadly, it seems it's not uncommon! You're absolutely right - push, push, push again! I hope it finally worked for you.

xx Moy

[TheOldBoy]

Hi Moy,

I had a similar experience… I only got to where I needed to be after a private referral to pulmonologist, who then entered me into his NHS practice, it was the best £160 I’ve ever spent… My gp didn’t have the depth of knowledge to deal with me… If you can afford it, I strongly recommend this route to anyone…

Regards, Adam

[MoyB in reply to TheOldBoy]

I considered my money well spent too when I went for the private consultation. We shouldn't have to do it, but I took the view that there's only one 'Me' and I was getting more and more poorly so had to take drastic action.

If we think it through, how many hundreds of medical conditions do we expect our poor GPs to know about? They can't be experts in them all. However, some are very reluctant to admit they are out of their depth. I respect the ones like my current GP who told me once, 'You're complicated! I'd prefer you to see the consultant!' Hooray for honesty and recognising when your knowledge is limited!

xx Moy

[Ergendl]

Well said!

[MoyB in reply to Ergendl]

Thank you. xx Moy

[Bingo88]

Good morning MoyB. What a fantastic inspirational post from you. I do agree that it depends on who you get treating you. But I moved to a different area a year ago and I don't find the Respiratory nurse as good as my old clinic that had 5 nurses that used to look after a large area and do home visits as well. And as you say you have to be forceful and ask to be referred sometimes to get some help. I have never seen a hospital doctor about my severe copd and Asthma. But getting to the stage I will ask to be referred soon. So pleased your doing so well. Brian

[MoyB in reply to Bingo88]

I suppose the Community Resp Nurses vary from area to area, just like the rest of the NHS. It continues to be a postcode lottery, doesn't it?

I generally speak highly of my GP practice, but the Resp nurses working there don't seem to me to be as skilled as the ones in the Community team. I once had an argument with one of them as I wanted to have my COPD, Asthma and Bronchiectasis reviewed at the same time. She told me that it couldn't happen as they were three different conditions. I explained to her that there is only ONE of me, and the three conditions co-exist within my body and impact on each other, therefore, reviewing them seperately made no sense. It got me nowhere! I couldn't really see the point of those reviews any more, except to show compliance which would save me having an 'awkward patient' marker on my file!

Last time I was 'invited' to attend, I said that I had just had a review with the consultant and suggested they look at his report instead. That seemed to work.

I hope that, when you eventually ask to be referred to the hospital, you get a positive response and find it helpful. Don't wait until you're desperate, though, in case there is a long wait to see someone.

xx Moy

[Bingo88 in reply to MoyB]

Thanks so much. Brian

[ghousrider]

Good day to you i am male 59 years old roughly the same illness you hvae i got a tracky in my kneck in it does help i on a machine 4 times a day to i get out a little but i had a few problems with hospital i had to sort my self i have got a good doctor in witch i praise up a lot he saved me back in 2013 when i fell ill / so yes they can not cure copd/ asma bronical problems but they will kill you it changed my way of life to am i wakeing up the next day i ask my self , when i go to bed breathing problems are rough on morning my peak flow is { 240 this is not good so stat execises } all the best ghoust rider

[MoyB in reply to ghousrider]

It sounds as though things have been tough for you for a long time. It can be exhausting living with a chronic illness, can't it?

My peak flow used to be between 180 and 200 but now I am between 230 and 270 which, for me, is brilliant! My consultant says that it is a good result for my height and weight. I don't know how big you are so don't know if 240 is considered good or bad. I just know that many of us would delight in a peak flow that high.

I think it's all very much down to the individual whether or not their peak flow is good. I check mine every morning and night and can soon see if I am having a problem ie if it drops suddenly and stays below my norm for a couple of days. That usually indicates to me that I have an infection of some kind. It's not unusual for it to drop overnight but if it rises in the morning as soon as I take my inhaler I don't worry.

I hope you're getting some support and not having to manage on your own.

All the best,

xx Moy

[B0xermad]

Hi MoyB,that is exactly my story almost the same starting in 2002,asthma diagnosis, 2014 bronchiectasis and copd after a scan referral to pulmonary rehab and breathe easy group which I still attend,2 bouts of pneumonia in hospital not being able to get out of the house. But now I have a walker,mobility scooter and do 10000 steps a day got my life back .I am 63.

[MoyB in reply to B0xermad]

That's great news! I don't manage 10000 steps a day, but I do try and stay active. I love my scooter as it means I can get to things independently whereas without it, I have to ask my husband to take me everywhere and that's not fair on him! I don't manage to walk far or fast but that's more about neuropathy in my feet these days, and not the breathlessness. I gave up my driving licence 9 years ago due to having spontaneous vertigo attacks with no warning. The scooter is great because I'm unlikely to harm myself or anyone else if I have an attack as I can let go and the scooter will automatically stop. My attitude of mind is much better since having it as I feel so much more free!

I'm so glad to know you've got your life back too! May I ask you how you fill your days now?

xx Moy

[B0xermad in reply to MoyB]

Walking the dog ,going out to lunch gardening a little, puzzle books, reading, gym and family. I bought a campervan 2 months ago and have been camping twice on the Isle of Wight where I live husband retired at Christmas so we try to do things within my ability

[MoyB in reply to B0xermad]

Sounds fabulous - especially the campervan! We're hoping to have a holiday on the Isle of Wight next year. I've wanted to do it for years but my husband has resisted because of the ferry charge. Suddenly, he wants to do it - so I'm certainly not going to argue! We've had a couple of day trips over there and a weekend long ago with one of our car clubs but it rained the whole time we were there. Then a few years ago, we booked a short break with Saga. We stayed in Burley but the 'highlight' of the trip was meant to be a visit to Osborne House. We had 1 1/2 hours there! To say I was disappointed was an understatement. But it now looks as though I'll get to see it again. Hurrah!

Now that I have my scooter, I'm out and about a lot more. I go to an art group once a week which I love, then there are a lot of monthly things or fortnightly things that happen, e.g. BreatheEasy group, Flower Club, WI, WI committee, Tactile Books group (we're making books for visually impaired children), Monster making (making 'worry monsters', for a family therapy service), Cuppa and Cake group (started as a craft group but not much crafting goes on now!), Knit and Natter, two car clubs, singing lessons (to help my croaky voice - damaged by reflux), and Scrabble when I can fit it in! Oh, and lunches out, of course! We have several regular ones with friends.

When I was first ill, I never thought my life would ever be busy like this again! I simply didn't have the energy or the breath. I'm loving being busy again now!

As you say, it's about doing things within your abilities, isn't it? Last weekend we went to a small local museum. We took the scooter in the car, but as we were able to park quite close by, I decided not to use it. Big mistake! If I'd had the scooter, I would have enjoyed the visit much more. I had to keep sitting down as although my chest is a lot better these days, I now have mild neuropathy in my feet which means that if I'm standing a lot, they go a bit numb and it feels like I'm walking on a lilo! A short rest puts it right for a while, but it takes the pleasure out of looking around when I'm always on the look out for a seat. So we plan to return soon - with the scooter - and I can have a proper, enjoyable look at everything.

I really hope you enjoy getting around with your campervan. I loved our caravan but we gave it up when I was so unwell as my husband was being left to do all the work, whereas we had shared it before. Also, he started worrying about me a lot and didn't like being 'in the middle of a field' on his own with me in case I needed medical help.

We're past that now, but as he's just turned 81, he doesn't want to tow a van any more. He'd quite like a camper though, so you never know.

I hope you carry on enjoying life and have some lovely times in your camper.

xx Moy

[B0xermad in reply to MoyB]

Hi in July we went to beaulieu and I used one of their scooters for the day and was amazed by how much it made my day there being able to get around. Its a good thing to test yourself but not to the detriment of your health as I keep getting told lol by I want to live ungraciously and test the boundaries much to my families distaste thinking that I should take it easy lol.the ferry over is expensive but go for a week day off peak and its better price

[battison]

that’s a great inspirational post to wake up to! It’s so good to hear of your fought for well being. This is the most useful, funny, touching forum. We so need to get as much information as possible and not just accept what gps say. Pulmonary rehab helped my husband hugely. It seemed a bit mad at the time as he was so breathless but he pushed through.all the best you x

[MoyB in reply to battison]

I know what you mean about breathlessness and the pulmonary rehab! It sounds as though it should be counter productive, but it isn't. When I first went, I was encouraged by seeing other people manage the exercises when a lot of them seemed to be worse than I was. I thought, 'If they can do it, I should be able to.' Like your husband, I found PR helped me enormously.

xx Moy

[battison in reply to MoyB]

I thought Will would just collapse at first! He’d come home with blackringed eyes and soaked through with in sweat. Some were there with Oxygen tanks. After PR we were offered 6 months free gym membership under the eye of instructor who knew our illnesses, watched over us, so we felt safe. slowly but surely we both increased in strength. It was fun, lots of loud music and laughter with of all us starting out with poor health. It was learning the effect of endomorphins (not sure if spelt right) - those hormones that flood you with well-being kept us keep going. (Better than sex!😂 - ish)

[MoyB in reply to battison]

🤣🤣🤣 Good old endorphins, eh?! It's great that you both persevered and felt the benefit of it. I think if we could bottle laughter, we'd make a fortune!

xx Moy

[Izb1]

Its so good to read that you have overcome the obstacles and are now feeling so much better Moy. I take my hat of to you for finding a path that suits you and not giving up. Its a very positive post and I am sure will inspire others. I feel very sad that there are so many people employed in the health sector that just are not doing their job properly, in fact I think there are alot of avenues especially in the UK where people really need re-training. Most gp's are not really equipped to deal with bronchiectasis and really should refer straight to the hospital as I do think time is important to stop the damage being done. I am so pleased that you have your life back and enjoying social activities again, long may it continue x

[MoyB in reply to Izb1]

Thank you. I agree with what you say about re-training being required in many places. I am a bit concerned that things are becoming tick box exercises because the computer outcome often overrules common sense. 'Computer says, 'No!' - do you remember that comedy on TV? I'm afraid too many professionals now rely on feeding info into a machine and believing the results.

We're all different and what is right for one person isn't right for another, even if, on paper, they seem to be the same. I believe we need to remind them of that from time to time.

xx Moy

[Maximonkey]

Hi Moy, free At news and good advice. I too had the same experience.. I make the most of everthing. Take care, Maximonkey..

[MoyB in reply to Maximonkey]

I think that's the thing to do - make the most of everything!

xx Moy

[Germantara]

Thankyou for sharing you're experience you are right peaple have to keep perciveerin to get right treatment because although not a cure but it help a lot on what a person can achieve to help themselves even if it is a slow pace

[MoyB in reply to Germantara]

👍xx Moy

[Musicqueen49]

What a truly inspirational message. Thanks MoyB xx

[MoyB in reply to Musicqueen49]

Thank you. xx Moy

[Alberta56]

Thank you Moy. I have learnt such a lot since I found this forum. I wish I had known as much when I was stuck with a useless surgery. 💖💖💖💖 xxxx

[battison in reply to Alberta56]

Me too! I just leant about the effect of humidifiers from another poster. Got one and shocked at how it takes moisture out of the air - 5 litres in 2 days. More shocked Will is not coughing at night and gets up without sitting on the edge of the bed struggling. I wish doctors told us these things!

[battison in reply to battison]

Ps not humidifier - DE-Humidifier!!

[MoyB in reply to battison]

That's great news! Who would have thought it would make such a profound difference?

I think doctors learn about medications but not necessarily all the other bits that go with general care eg humidifiers that make the surrounding air more comfortable to breathe. Sometimes, nurses know more about these things, but I think we're more likely to find out about them when others share their experiences through the Forum.

xx Moy

[MoyB in reply to Alberta56]

Same here! This Forum has been a life line for me! xx Moy

[B0xermad]

What I think these days lol

My ethic

[MoyB in reply to B0xermad]

🤣🤣🤣Love it! Let's cause havoc together! Xx Moy