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Lung Conditions Community Forum

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I’m new around here

Sheenama profile image
40 Replies

Hi I’m new here so thought I would say hi 😄. I’m looking to gain insight into lung conditions as I’ve been left with damage after COVID pneumonia in July 2021.

40 Replies
sassy59 profile image

Hi Sheenama, welcome to this friendly forum, sorry to hear covid left you with lung damage. Do you have any diagnosis? There is a wealth of knowledge on here so hoping we can help in some way. We are not medically trained but have experience by the shed load. Xxx

Sheenama profile image
Sheenama in reply to sassy59

Hi Sassy thanks for your reply. I have a cavitating lesion which is probably an abscess due to covid. I also had a fungal lung infection which was probably from the cpap machine in icu. I’m waiting for a new ct scan and then a new respiratory consultation, so hopefully I will know more then. I had double covid pneumonia in July and the another pneumonia where I was blue lighted to hospital on xmas day….so done with this.x

sassy59 profile image
sassy59 in reply to Sheenama

That’s such a lot to deal with Sheenama. I wish you better days ahead. Xxxx

Katinka46 profile image

Welcome to this forum. I am sorry to hear about your lung damage. I would love to hear more if you felt like talking about it. For instance what is the nature of the damage, where is it and how was it identified and diagnosed? I have not had Covid pneumonia but I do have lung damage that is slightly mysterious. And has caused some head-scratching among the doctors.Sorry, was that all a but full on?

All the best

Kate x

Sheenama profile image
Sheenama in reply to Katinka46

Hi Kate, no not too full on at all, no worries. How strange that the specialists are scratching their heads. I hope they find out what it is. How does your condition affect you? I have damage from COVID, scarring or fibrosis…no idea if they’re the same. Also a cavitating lesion which they think is an abscess from COVID. I was in hospital for 11 weeks, 3 of those in icu. I’ve had to learn how to walk again etc. Still on oxygen at home. I have a ct scan on 30th and then consult on April 20th so I will know more then.x

Damon1864 profile image

Hisheenama welcome to the site, you will find us a friendly bunch we like a laugh and a chat and support each other. Have a goodnight and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻 o

Sheenama profile image
Sheenama in reply to Damon1864

Hi Damon 1864, thanks for replying to me. I look forward to getting to know some new folk. Also I’m glad that you’re a friendly bunch!

natswright profile image

Goodness, you have been through the mill. How are you managing now, are you able to use stairs, or walk any distance?

I contracted Covid in mid september 2021 and am still recovering now. I also have lung damage from pneumonia.

Its taken a while, but I can now walk 1-2km and even jog and cycle a little. I'm still very tired during the day, so do need to rest a lot still, but I am managing to work my job from home.

Sometimes my lungs feel a bit tired, especially after exertion. I'm due a checkup x-ray soon.

Sheenama profile image
Sheenama in reply to natswright

Hi natswright, yes it’s been a shocking time for me. So sorry to hear that you’ve been through it too😢 I had delta 2, which did you have? I can just about do stairs now, although it’s taken me since end of September lol. I have to laugh or else it’s too much doom and gloom! But yeah I have oxygen at home, when I’m at rest I don’t need it so much now. It’s when I walk as my legs are weak now and I get super breathless even with my “ jet pack” on😂. This evening I managed a 12 minute walk and im trying to build up each week. Mostly during the day im in bed or resting as im tired most of the time. Have you done anything special to enable you to walk 1-2 km? Also do you attend the long covid clinic? Im a photographer and I can’t work right now as it’s too physical. When is your check up?

natswright profile image
natswright in reply to Sheenama

Oh a photographer! I'm a keen amature photographer and i've documented my recovery on youtube.com/natswright.

Pacing is how i've done things. I'll give you a quick rundown of what I could manage month by month

month 0 (hospital) - unable to walk without assistance, needed O2 just to sit up.

month 1 (initial discharge) mostly bed bound and in need of care. could just manage stairs and walking 10 meters, but found it exhausting

month 2 (moved in with parents to get support) Able to walk 50m and manage stairs, but still extremely breathless afterwards and needing 30 minutes to recover.

month 3 (Home to look after myself) Could just manage to carry shopping delivery up stairs, but it completely wiped me out for the day. Able to walk 100m, increased to 300m by end of month, using 4 wheeled walker.

month 4 (January 2022) - Increased walking to 800 meters gradually over the month, still extremely tired during the day. Used a 4 wheeled walker to help. bed by 4pm sometimes.

month 5 (February) - Gradually improved endurance, and was walking around 1km a few times a week. able to do light housework, stairs no longer an issue, and able to manage food deliveries, although tired afterwards. Often went to bed at 6pm

month 6 (March) Starting to feel better, although still tired during the day. Capable of walking almost 2km but exhausting. Can cycle 5 minutes and even jog for 60 seconds. Driving now, started driving the month before. Can carry shopping upstairs, just a bit out of breath now. Stairs easy. Can be more breathless if fatigued though.

In the early months I suffered a Tachycardia, where standing had my heart pumping around 150bpm. This has gradually cleared up and my heart rate standing is between 80-100bpm now. Still high, but better

Before covid, I was a good 5k runner and hiked up mountains!

Sheenama profile image
Sheenama in reply to natswright

Wow, you have done amazingly. I will have a nose at your youtube. What is a four wheel Walker? I use metal canes but the action of using them hurt my arms. I adore photography and couldn’t imagine doing anything else. What do you like to photograph?

natswright profile image
natswright in reply to Sheenama

Its essentially a seat, with 4 wheels and a handle. You lean into it and if you get tired, brakes on, have a sit down anywhere!

You mentioned wobbly legs, this is due to your muscles deconditioning and struggling to get oxygen. It improves with time, but I still have weakness in my legs. Difference is, I can recover in hours instead of days now.

I love street, portrait and landscape photography! What do you shoot? Was Photography you main job and income?

I was sporty too, its soul crushing to loose what you enjoy doing!

Sheenama profile image
Sheenama in reply to natswright

Oh yes I’ve seen those and thought to myself that I could do with one. I will look into it. My legs have defo become a bit stronger, like you at first I couldn’t even stand up. I was the worst patient for the physio therapists. I did apologise though lol.I love landscape too also still life. Professionally I shoot people, so families etc and I specialise in newborns which I truly adore, it’s also an absolute privilege. Yep doing what you love being taken away is very sad. I will get back to it though! Oh gosh, even worse for yo7 being sporty.x

Tykelady profile image
Tykelady in reply to Sheenama

Definitely get a walker. I have my oxygen tank attached to mine and my first public appearance was a bit nerve racking thinking everyone was looking at me but I don't give a hoot now. Good luck with your recovery. Dorothy.

CDPO16 profile image

Hi and welcome Sheenama, you have had such a rough time. I hope that you will have better health to come.

Sheenama profile image
Sheenama in reply to CDPO16

Hi CDPO16, thank you and yes I hope I so too ☺️

Thepainterswife profile image

Hi Sheenama , I’m a carer for my husband who has emphysema so sorry I can’t help with post covid advice . I just wanted to say welcome to the forum and I’m sure many of us will enjoy seeing your photos at some point 😊

Sheenama profile image
Sheenama in reply to Thepainterswife

Hi Thepainterswife, so sorry to hear about your husband. Thank you also for your welcome. I may share some at some point once I can get out and about and can do some images for my pleasure☺️

Caspiana profile image

Hello Sheenama. 👋😊

You have many great replies so I just wanted to say hello and welcome. xx 🍀

Sheenama profile image
Sheenama in reply to Caspiana

Hi Caspiana, thank you so kind.xx

HungryHufflepuff profile image

Hello and welcome 🤗 I’m sorry to know you’re going through so much. Hopefully you’ll get plenty of advice and support here ☀️🐑

Sheenama profile image
Sheenama in reply to HungryHufflepuff

Thank you so much HungryHufflepuff x

watergazer profile image

Hi and welcome Sheena. Sorry to hear how covid has affected you. Take care. X

Hellodolly profile image

Hello and welcome -So sorry you have been through such a long and painful journey.

There are a few of us on here with scarring and slightly confusing diagnoses due to pneumonia etc. You are in good company and I wish you the very best for a continuous and speedy recovery back to your career and full health.

Virtual hugs

Hello Dolly 🌷💐🦔

Greenthorn profile image

Hi Sheenama and welcome to this site. I get inspired reading so many supportive comments; there really is a wealth of patient experience here. I'm a hospital volunteer (Ward Musician) and i occasionally post about my visits and the patients I see and chat with. I try and inject the site with some humour!

Izb1 profile image

Hi and welcome to the site Sheenama, sounds like you have been through alot, hoping you have a good recovery and you start to feel better soon x

Morrison10 profile image

Hello, sorry you’ve had such a bad experience with covid, hope you soon improve. As I was born with rare condition, PCD, see site on here, and have had damaged lungs for at least 50 years, I have had to be extra careful recently not been out for months as I’ve had pseudomonas and multophilia partying in my lungs, plus some other nasties taking up residence! Before covid I was able to have near normal life. Best wishes, Jean x

Collie4 profile image

Welcome. Sorry to hear you had covid and now have some damage. Lots of lovely people on here, who reassure , it’s always good to know we can talk to people who understand. I hope you get some help for your lung problem, do take your gp’s advice.

I wish you all the best. Stay safe.

Jandm profile image

Hi Sheenama 😀

Walkwalkwalk profile image

Welcome Sheenama There is so much good advice already given to you so all I will add is my best wishes for your continuing recovery. Grace

HollyBoyd profile image

Hi and welcome Sheenama. You really had a tough time last year with covid. You sound to be doing the right things and taking a day at a time, slow progress but I wish you all the very best for your recovery. Take care xxx😊

Karenanne61 profile image

Hi. Welcome to this friendly, funny and informative forum. You have been through the mill. I have asthma and very severe copd. I'm under consideration for referral for a lung transplant. I too was on life support and can confirm it takes time to do the things we used to take for granted. Give your self time, learn to pace, ask to be referred to pulmonary rehab and check in with the amazing people here.

Angel-Girl profile image

Hi Sheenama, welcome, and also so sorry you have the need to use a forum like this. I have several lung issues and asthma as a result of catching swine flu in 2009, (like you I was fit and well) now I rarely leave home. It took a while to get a proper diagnosis as the doctors were sort of playing catch up and trying to figure it out as it was all new. Your best bet is to get referred to as high a person as you can as usually they have the money to order tests and fund better treatment. Message me and we can have a chat. I hope you get answers soon and start to feel better. Kind regards Lara 😀

Jaybird19 profile image

Welcome sheenama you will find this is a very helpful and friendly group .

Patk1 profile image

Hello and welcome x

Alberta56 profile image

Welcome to the form, Sheenama. I hope you are now on the road to recovery. It's a slow but steady process. At times you feel as if you'll never get there, but you will. I had covid but not too badly in January and I still tend to get tired easily; particularly my legs object to any serious walking. Take it easy , go with the flow and send us some of your photos when you feel able. xxx

Busybee57 profile image

Hi Sheenama, I hope you’re feeling better soon xx A wealth of knowledge and inspiration here so you’re in the right place xx

Sheenama profile image

Thank you all so much, you truly are a wonderful group of people. I have read all of you comments and I will get back to you when I feel the energy flow.xx

Dedalus profile image

Hello and welcome Sheenama.

briany profile image

helo good to meet you i have hadempherseyma for 6 years im now 73 had some lung removed , have good days and bad days, the one thing i have stuck to is my meds an emergency pufer a controled pufer and steriod when im haveing abad time and anitbitics, i have now found my own level and lifes prety good just acsept it and carry on briany

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