HP and Emphysema at 37

[Brittbot]

Hi I'm looking for some advice from anyone with the same/similar diagnosis in regards to what to expect as it worsens and any advice for symptom management and treatment.

[peege]

A warm welcome to you Brittbot...None of us are medically qualified, just patients with experiences of various lung diseases.

You do seem mighty young to have copd/ememphysema. Who diagnosed you and how were you diagnosed? Do you smoke?

Patients here are mostly older and many have lived to ripe ages with it by taking medication, usually inhalers along with a few changes in life ie quit smoking - if you do -healthy diet, healthy weight, plenty of exercise.

I dont have copd, I've learnt the above from others here and experience of keeping as well as can be with my lung issues.

If I were you I'd insist on having the very simple Alpha 1 Deficiency test which is why a few people have copd young........ they don't always get diagnosis right I have to say.

There's always the helpline above for professional advice, the search bar above for similar questions and replies and in the 'help' section you should be able to find more information on lung diseases . All the best to you, I'm sure others will be along soon. P

[Brittbot in reply to peege]

Hi Peege, thank you so much for your welcoming reply. X. I hope you are doing well on your journey.

My emphysema and HP(Hypersensitive Pneumonitis) were both caught in 2020 during an MRI for a suspected head injury - which actually turned out to be covid-pre-vaccine. (I'd hurt my head and was vomiting severely for days with a fever so they assumed concussion and gastritis) it wasn't until over a year later i rang my GP and complained I always felt like i had covid but was always testing negative and thats when he said there were some issues with your last CT scan(I'd never had a CT) so I initially thought they'd screwed up but it was that MRI from 2020 that had the results on it.

2021 - Referred to lung specialist, subsequent CT showed emphysema and Hypersensitive Pneumonitis. Also went for airflow tests and the steroids actually made my HP worse(my specialist is amazing I'm so lucky to have him and he was shocked and had no real understanding of why.) My airflow was comprised too i want to say the tests came back as I had 70%Fev but I genuinely can't be sure on that.

I've rescued pigeons for a few years and he wondered if the HP was related to that(pigeon lung/cryptococcal) but nothing showing up in multiple phlebotomy tests. I've stopped doing that on his orders, miss my pidges but he was sorta convinced it was that.

2021 September was so bad i actually secured a move to England near the sea for a few months and he said absolutely go for it as hes concerned its something in my flat causing the HP however I did a course of prednisone at the same time and my subsequent scan showed it had regressed. Great news but didn't know if it was the getting away or pillls that did it. He's also not sure.

2022 September its gotten real bad again, spoke to specialist in October no scan yet but put on more prednisone which i actually held off taking so i could get my covid booster (last year they gave me my third Pfizer instead of booster due to high amount of steroids apparently so I had my covid booster last week along with my first flu jag.) but I'm considering not taking the steroids until I have the scan to confirm it is the HP(steroids give me awful side effects but I'll definitely take them again.

I do smoke and have cut down almost completely but it genuinely feels no better in terms of the HP obviously the stopping smoking will help the emphysema but it's not directly linked to the HP.

I guess I was hoping to find someone who has HP and found out what the irritant is thats causing it, apparently not many HP sufferers find that out n i guess thats whats terrifying me, that every breath I'm taking is somehow poisonous lol sorry for hyperbole I'm in a bit of a bad mental state today after some other news lol it never ends. I also have had my rescue cat for 18yrs n he wondered if it was her but even it was she's my whole life i simply could not give her away but thankfully no pet allergens have shown up so far anyway.

I didn't know there was a helpline, that's really great to know, thank you so much and I'll definitely ask for that Alpha 1 test, my dad has COPD as do his brothers so deffo a genetic history unfortunately.

Sorry this is so scattered and thank you for taking the time to reply xxx🙏

[CDPO16]

Hi and welcome. My first thought was Alpha 1 deficiency too. Who diagnosed you and what tests have you had? Peege has already covered the most important points. I would just add to ask your doctor to refer you for pulmonary rehabilitation, a course where you would learn exercises and how to live well with COPD .

[Pugnala in reply to CDPO16]

Hi all I'm 52 now and got diagnosed with copd about 5 years ago also brittle asthma about 3 years ago n I've rapidly gone down hill,don't smoke nor drink

[Brittbot in reply to Pugnala]

Hi Pugnala, I'm so sorry, it sounds like a real shitty hand you got man. I genuinely appreciate your honest reply, I'm going to be honest I hadn't even considered alcohol as an issue here but yeah of course it is. Thank you for bringing this up. Wishing you well. X

[Brittbot in reply to CDPO16]

Hi, thank you so much for your reply, I'm going to ask my specialist about the Alpha 1 test now i know about it. X. I also didn't know there was rehabilitation either so thank you as that sounds really helpful. Hope you are doing well and thanks again. X

[CDPO16 in reply to Brittbot]

You are welcome. Keep in touch and let us know how you get on. Best wishes.

[Brittbot in reply to CDPO16]

Awe thank you, i will. All the best to you too. X

[JJ_7]

Welcome to the group Brittbot. I have had COPD for approx 30 years. I am still here and walking every day. I can't stress enough the importance of keeping active daily and if you can take up a sport, or do anything physically active daily, this will help. COPD is a progressive disease. I think Peege's advice to you is excellent. I am so glad you are here addressing the problem from the start. If you smoke, join an NHS quit smoking group. Best wishes JJ x

[Brittbot in reply to JJ_7]

Hi JJ_7, thank you for the welcome. That's amazing to hear I'm so glad you're doing well💜, my dad got diagnosed COPD 10yrs ago hes 65 and he has went down hill but still able to work just now but it sounds like you really attacked it with everything you had which I don't think my dad did so the proof is in the pudding i guess. The problem is how breathless i get just walking to my local pharmacy, specialist said nothing hardcore, i do walk every day and taking up yoga at home now. Hope that's enough 🤤😂. Thanks so much for your advice and i wish you all the best. Xxx

[JJ_7 in reply to Brittbot]

Thank you Brittbot and best wishes JJx

[Alberta56]

Welcome. Lung diseases are very variable in their effect on people. You could go for many years without much deterioration. That is assuming you have been correctly diagnosed. Fingers crossed for you.

[Brittbot in reply to Alberta56]

Hi Alberta56, thanks for your welcome. X. Yes there are so many variables aren't there its so complex and unknowing and I guess thats what is so scary about it all. I hope you are doing well, all the best and thank you for replying. Xxx

[Alberta56 in reply to Brittbot]

You have youth on your side. Do ask for rehab classes. They helped me more than anything.

[Patk1]

Welcome to the forum x

[Brittbot in reply to Patk1]

Thank you so much Patk1. Xxx

[Caspiana]

Hello Britbott, 😊👋

What does HP stand for please? How were you diagnosed? I guess many of us with lung disease follow a few basic rules and make some lifestyle changes.

I don't know if you are a smoker, as not all patients with emphysema get it from smoking. But if you are still smoking you must stop. Really there's no other way about it.

Avoiding infections is of course not easy, but we try to do what we can as we are at such an increased risk of infection. The more infections we get the weaker our lungs become, unfortunately, our lungs are not as sturdy unlike say, the liver for instance which can miraculously regenerate itself to a certain extent.

Everyone has their own personal feelings about vaccinations but if you are not adverse to them, it is recommended. Although there is no guaranteed way to prevent infections, being proactive is so very helpful. The usual hand washing and using alcohol based gels, I know we are all used to that since Covid started . Try not to mingle in crowds and do not socialise with people who are ill. It is always wiser to reschedule.

My lung disease does not produce a lot of mucus. So I am not very clear on how mucus clearing techniques work, but I understand that as mucus collects on the airways, this makes breathing even more difficult. Perhaps someone else can enlighten you if you need more information. Your lung consultant can help you with this for sure.

Breathing techniques too are very helpful. You can read up on diaphragmatic breathing and pursed lip breathing techniques online. Pursed lip breathing really got me from A to B most of the time. I am pretty sure I would have been a heap on the floor if I hadn't used it. 😔

Do you use oxygen? Depending on how severe your disease is, your doctor might recommend it.

Take all your medications as prescribed, always. Food is very important in managing your disease. If you feel very full, or get very breathless when eating, try eating small meals. Instead of three times a day, spread it out to four or five times. Balance is important too, along with keeping a healthy weight. Being too heavy discourages us from exercise and exercise is vital. Walking is very good for our lungs. Do not be afraid of exercise because you feel out of breath. The more we shy away from exercise, the more we lose elasticity in our lungs and muscle strength will decline. Thirty minutes of walking a day at least three times a week to begin with is a good place to start. Having said that, rest is so important too. On days when you can't.......don't.

I am most likely preaching to the converted. You probably know most of this, but I thought I'd chip in. You are very young to be ill with lung disease. I had a lung transplant due to a very rare lung disease called Bronchiolitis Obliterans. I hope you will never get to the stage of needing such a radical treatment ( not a cure by any means) like a transplant but just know if things get really bad it is an option.

Life is not over just because you have been diagnosed with lung disease. The more knowledgeable you are about your condition, the less afraid of it you will be and the more equipped you will be to help yourself.

I truly wish you well.

Cas xx 🌿☘️🌿

[Brittbot in reply to Caspiana]

Hi Caspiana😀👋.

Thanks so much for reply. X. HP is hypersensitive pneumonitis(basically breathing in something that my lungs are allergic to) it's quite advanced so my specialist thinks its something in my flat as due to other ill health issues its where i do spend most of my time.

Yes absolutely need to quit for good I'm down to two rollups a day but it can creep up on bad days i know how ridiculous it is I'm smoking I'm so ashamed to ask for advice while doing the one and only real thing that I can do for my lungs especially the emphysema, without going into too much private detail I've had a severe trauma recently which brought up all sorts from my childhood and my current living situation is extremely stressful so the smoking is hard to completely conquer right now.

I'm also completely up to date with vaccinations and got my first flu jag this year too and I've kinda been isolating since beginning of covid, i do get the odd night out and odd friend visiting but i still mask up and test and try avoid large crowds at the best of times but my hobby is gigs😭 last two I've been too I've gotten ill so giving it a rest for now.

I walk 3miles every day n do some light yoga but feel like its not enough but also struggling to do it so aye bit tricky isn't it lol.

Thank you for saying that💜, I suffer severe depression and anxiety which doesn't make any of this better being a natural overthinker and worrier. So very kind and thoughtful of you. X.

That sounds really scary what you went through, I'm so glad you got the treatment you needed, a lung transplant sounds so utterly terrifying and surreal to me, you must be real strong to have gone through all that and still be and still here helping others 💜.

Thanks so much Caspiana and i wish you the best in your journey too. X🙏

[Bevvy]

Welcome to group, I also have COPD and was diagnosed in early 40’s so have had it 12-13 yrs now but was clearly unwell some years beforehand. I would reiterate what others have said. It’s really important to exercise as much as possible, eat healthily and take medications. Also trying to avoid people with colds etc is helpful. Certainly I can pick up a cold from someone and it can quickly turn into bacterial infection resulting in pneumonia or pleurisy, so need to be very careful. Definitely make sure you wash hands regularly but especially before eating and drinking because is easy to transfer germs this way.

Finally ask your gp for a referral for pulmonary rehabilitation course. This is a course for people with lung conditions but especially COPD. It’s an exercise course done under supervision which shows you how important it is to exercise. Plus education sessions about how to live well with COPD. It usually takes place twice a week for 2hrs per session. First hour is exercise and 2nd is education. Seems to vary how long course lasts but usually is around 8weeks. Courses are led by specialist staff such as respiratory physios or nurses.

You will also gain support and information from this site so please don’t hesitate to ask questions and seek information. Again welcome 👋👋

[Brittbot in reply to Bevvy]

Hi Bevvy, thanks so much for your welcome, your reply has me really thinking now and has also sorta validated some actions i took in regards to dropping a few friends who were not only anti mask/vaccine and covid in general but had no respect for my position and were making me feel guilty basically for being ill lol so inadvertently or not on your end thats really made me feel better so thank you. X.

I babysit my brothers kids a lot and still have friends that are pretty lax with their own health too and I dunno i feel more empowered now after reading what you said👌.. to perhaps.. put up some boundaries as I'm too much of a people pleaser as it is but I think i need to take this all a bit more seriously in terms of my approach around people.

Wow so you were super young too then, I'm sorry you had to deal with that, do you mind if i ask wether you smoked, obviously I have until recently but even my specialist said no way smoking has caused this level of HP?

I spoke to my dad tonight and he didn't know of the Alpha 1 but he is 65,he also has never been invited to a rehabilitation centre and has only been diagnosed through a breath test which i find crazy but I'm obviously new to it all, we did have a laugh tonight when i went oh thats the two inhalers i am on🙉😂. I wonder if our geography may have a part to play I'm sorta central Scotland n ya'll seem to be mostly down south but I'm so thankful for everything you brought up I'll ask my specialist about it all he's very supportive and open and seems genuinely engaged in wanting to help me which hasn't been my usual experience so i do feel lucky.

Thanks for saying that too as i felt a bit like ok I've asked my question i best leave ya'll lovely people alone now but it's beyond words how much these interactions have helped me and calmed and centred my approach 💜. X

All the best Bevvy and thank you. X

[Bevvy in reply to Brittbot]

Hi. It’s generally thought that I developed COPD due to severe cases of pleurisy and pneumonia. Each bout taking many months to recover from. Plus general traffic pollution has contributed. I am as careful as possible (without reducing my quality of life eg never going out or seeing anyone) to avoid colds etc as 9x out of 10 they turn into something nasty.

Sadly in relation to friends etc not take your condition seriously, this can happen when anyone has a chronic condition, so it’s not just because you have COPD but it’s definitely true that you find out who your true friends are when facing adversity. It’s also worth remembering that reality is most people are lucky to have 4-5 true friends, who will stick with you no matter what. The rest of your “friends” are actually acquaintances who will flow into and out of your life. I am on a couple of COPD Facebook pages and it is very sad the number of people who have been “abandoned “ not only by friends but also family! Again other people don’t necessarily cope with long term conditions.

In relation to pulmonary rehabilitation - this generally isn’t done at a “rehab centre” but is usually carried out, at a hospital outreach premises or even inside the main hospital.

Finally please don’t feel that now you have “asked my question” you need to leave us alone, stick around. As said we are a friends group dealing with many different lung conditions. You will find information and advice galore here. Plus an understanding of what you are going through at the beginning of your journey. Hopefully with advice from here you will stay at or even improve your lung function.

[Alberta56]

i wouldn't worry too much about the 2 rollups until you feel better in yourself and feel ready to tackle the issue. Please keep in touch. We prop each other up on this forum. One thing I don't think anyone's mentioned yet is that you often have to fight your corner with the medical profession to get what you need. Insist on anything you feel you need, and keep on insisting.xxx