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Feeling overwhelmed

Roxdale profile image
14 Replies

After a routine lung screening CT scan I was diagnosed with mild emphysema and some calcification of my heart arteries. I was also referred for a further high definition CT Scan to confirm bronchiectasis. My GP prescribed Salamol which did nothing to help the breathlessness and chest tightness I'd been experiencing on walking my dog for the last few months. The GP has now prescribed Anoro Ellipta which does seem to help a little but has referred me to the rapid access chest pain clinic and I have an appointment in a few weeks.The HDCT has now confirmed early lung scarring and I've been referred to the respiratory clinic. Waiting for an appointment.

My GP arranged a. ECG which has shown some left side blockage and prescribed a GTN spray which I'm too scared to use!

I'm reeling at the minute with all this as I thought I was reasonably healthy (apart from arthritis in my hands) and now seem to be getting one nightmare diagnosis after the other.

Sorry for the long post. Just hoping for some input if anyone else has faced this.

Many thanks.

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Roxdale profile image
Roxdale
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14 Replies
Ern007 profile image
Ern007

Hi Roxdale - I have the same heart and lung problems as you bar "bronchiectasis." - I don't have that but 3 different art problems , COPD/Scarring and Cancer to boot, I am still here, OA - Everwhere,

I know how you feel, your are not alone, that's why I gave you my history. We cope we all do on here and you will when you come to terms,

I was dubious over GTN spray at first but it HELPS, it helps your deliver blood to your heart when it dilates., You are much safer taking it, the cons are few, main con is headache until you get used.

Long post does not matter you wanted to get your story across. We all do that at times.

Scarring if just diagnosed may well be light. You will be given treatment for your heart if needed. Let all the tests happen, and then see where you are,

My advice is try and chill and take your GTN when you need it eg pain.

I can't help you with bronchiectasis. - I don't have that but lots on here do and no doubt one will spot this.

Lastly - Quite often thing are not as bad as you thinking they are, so until all tests are done, try and relax.

Take care and if a pain, GTN it ;-) I do.

cazza34 profile image
cazza34 in reply to Ern007

HelloIf you have been diagnosed with light scarring, ask to be put on a drug called Nintedanib, it slows down the scarring. I am on this. Has to be prescribed by a hospital consultant.

Ern007 profile image
Ern007 in reply to cazza34

Not sure it is light, I had scarring 30 years ago and more scarring was found last year. I will mention Hellof thank you.

kev60 profile image
kev60

Hi , I think this happens quite a lot (being overwhelmed) . I had a cancer scare in 2017 because I lost my voice but I was cleared by the oncologist but they found holes in the top of my lungs (emphysema) , I didn’t think anything of it as my breathing was ok and I wasn’t told or given any information. Until a year later I got a txt from the GP that I was eligible for a flu jab and when I went to have it they said I wasn’t eligible as I didn’t have COPD, I had to refer them to the oncologist letter and then everything went mad . I was put on an inhaler (didn’t work) and given a rescue pack and plan and booked in for a lung function test. My GP was good once they realised I had emphysema and I went through 6 inhalers to find the right one. So all good until I had x-ray in January this year just got the results back (very late) and a doctor called me and told me my x-ray is normal so I asked about the emphysema and she just kept saying it’s normal. So not happy about this as I had an MRI last year and they found more holes in the bottom and rear of my lung (I have 8-10 bullae(holes) now. I also get the message about extra ailments, before 2017 I rarely saw a doctor but since then it’s like I have letters after my name now FND, COPD, GORD and OA of the spine as well as the new once that come along like functional tremor and bletheritis(eyes). I think it’s a case of keeping calm and get all the help your due. Good luck. Kevin

Alberta56 profile image
Alberta56 in reply to kev60

X-rays don't show everything that's going on in the lungs. A CT scan is needed for that.

Tiggertheterrier profile image
Tiggertheterrier

hi Roxdale, I too got a shock diagnosis of bronchiectasis in 2021. Just thought my asthma had gone loopy again! I haven't, so far, had any heart issues but they want to check fir that as my breathing has gone a lot worse lately. I use four different inhalers for my lungs and I know they can be 'moved up the ladder' to stronger one's if necessary. Respiratory physiotherapists can help to show you various methods of keeping your lungs emptied of mucous ( v important with bronchiectasis) and Pulmonary Rehab clinics can help with that plus breathlessness and exercise.

Don't give up! There's treatment out there, but sometimes you need to be proactive in asking to be referred to various departments.

Good luck with your next appointments!

teddyd profile image
teddyd

HiI am sure the majority

of members will say the diagnosis is over whelming, and coming to terms with it all takes time.

You health is the same as it was before the diagnosis except you are now getting the support, treatment, meducation and test to help you.

I have bronchietasis ,asthma etc etc. There is a very wide range of tests and treatment and it can take a bit of time to get the best combination of treatment/medication that is best for you. Also taking care of yourself avoiding smoky areas , particular weather conditions. Cleaning products ,strong smell are a few of my triggers.

It took me a while to find my new normal, but overall I am still active and I am no spring chicken.

Izb1 profile image
Izb1

Its all a bit overwhelming isnt it when first diagnosed but think the more you know the better you can deal with things. I have rheumatoid arthritis , bronchiectasis, glaucoma and a few other ailments. After being discharged from respiratory and ent departments both saying there was nothing more they could do for me, I got fed up with feeling so rotten so asked my doctor for a referral to a bronch specialist at Wythenshawe who has done a whole host of tests. She has found that I have developed asthma which is quite normal with rheumatoid and has put me on Fostair nexthaler, I coughed alot for the first few days but must admit to finally losing the wheezy chest and waking up in the night breathless. After reading the letter sent to my gp stating I have mild emphysema and mild calcification which I will speak about in my next appointment. Like you I keep thinking what next. Try not to panic at least you now know what is wrong and you can deal with it. If you are worried at all give the helpline a ring, the number is above. Hope this has helped x

Roxdale profile image
Roxdale

Thank you all for your replies and support. Its greatly appreciated. So glad I found this Forum.

Nula2 profile image
Nula2

Hi Roxdale🙋‍♀️, Welcome to this lovely forum. I have Bronchiectasis (and other lung and non-lung problems) and I frequently find my "don't panic" button doesn't work🤪, but this forum has become a bit of a lifeline for me with loads of really helpful tips, support and sense of fun. I now think of other members as friends, which is lovely as I live on my own don't go out much and meet many people now. My tip for Bronch is it's mainly about self help and seeing a Bronchiectasis specialist and they should also refer you to a physio who can help you with breathing techniques etc. Take care xxx

watergazer profile image
watergazer

hi roxdale and welcome. It is overwhelming to find out you have health issues. I was diagnosed with asthma and bronchiectasis when I was 50 but apparently I’ve had it since I was 5 and have ambled along struggling with sport and breathlessness I’m on fostairnexthaler and this has been the best inhaler by far as my exercabations have been less. I also have other health issues It seems some issues go hand in hand. Take care xx

Alberta56 profile image
Alberta56

Welcome to the forum. I'm glad these answers have helped. I seem to be the only person on here who was pleased to get a diagnosis. I thought 'Thank Gawd. Now my horrible family will have to take me seriously.' I can see that for a younger, fitter person it's not so funny. Hopefully with the right treatment and meds you will remain fit for many years to come. I found Salamol NBG and asked to be put back on Ventolin ( same medication, but a different propellent.) Salamol would work with a spacer device. Have you been prescribed one of those? It sounds as if you need to see a competent consultant, who will explain all the options available. Pulmonary Rehab might help too. Best wishes.

peege profile image
peege in reply to Alberta56

Does NBG mean no bl**dy good Chris? I've never seen that abbreviation before.

To Roxdale, it's easy to say don't panic I know. There are breathing techniques many of us with lung issues use that are also so useful for anxiety, keeping calm and lowering pulse.

I dont know what GTN spray is but it was prescribed to help so I'd say try it next time you're breathlessness on a dog walk. Its so lovely having a dog to get you out in nature which is so good for us in every way.

Many many people have scarring, some from childhood infections. I saw my scans in 2013, lovely consultant said "dont panic, you've a lovely pair of lungs. The important thing is to prevent the accumulation of more". So I do avoid getting infections by keeping my immune system fighting fit, avoid people's coughs/colds/flu etc (dont kiss snotty g'children), take prescribed medication (which includes an antibiotic on 3 days per week in winter), avoid pollution ie cig smoke-smoke in general-traffic fumes and clear mucus from lungs .... it's a perfect warm wet breeding ground for bacteria (the 'huffing technique is usually enough for me). Plus have all flu & covid vaccinations .

Personally I was very relieved to receive diagnosis because it meant I old do all the above to prevent getting worse & take precautions of exercise/ healthy diet/healthy weight/vitamins & minerals.

Thinking of you and please keep in touch, this forum is for support and sharing knowledge & experience and there's a helpline - 0300 222 5800 uk office hours or WhatsApp . P

Alberta56 profile image
Alberta56 in reply to peege

NBG definitely means what you think it does- most unladylike of me to use it. I hope Roxdale is reassured to know he/she is not the only one to get that horrible panicky feeling.

My husband has a GTN spray as an emergency measure- he's never used it. I was issued one by the ambulance crew when I had a heart attack years ago. You spray it under your tongue and it relieves the symptoms of a heart attack. I felt instantly better after they used it on me, a bit peeved in fact that they kept me in hospital. I think people with angina are issued with them. Hopefully Roxdale's, like ours, is a temporary measure, but I would be happy to use one again. I had a neighbour with angina who used his a lot.

Best wishes, love Chris xxx

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