New and Saying Hello after COVID - Lung Conditions C...

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New and Saying Hello after COVID

TumbleDrum profile image
34 Replies

Hello everyone. I'm pretty new so I thought I would say a quick hello. I am here because I got COVID in late October and had a pretty rough time with it. I am still suffering with labored breathing. The challenge is more pulling air into my lungs than breathlessness.

During the acute infection, I didn't end up going into the hospital because I was too scared to be isolated and die alone. Also, I didn't understand the difference between shortness of breath, breathlessness, and difficulty breathing. And since I could still do things during the day (symptoms got worse at night) the triage nurse said it sounded moderate and not severe, so telehealth doc prescribed me a round of dexamethasone. PCP dismissed breathing issues as anxiety on Dec. 1 and, after some back and forth, I finally got a chest CT, PFT, and got into a pulmonologist in early Feb.

I haven't got an official diagnosis, but the pulmonologist suspected Asthma. My Chest CT came back clear and so did my PFT, except for a high DLCO and elevated airway resistance. The major problem is that it feels like my chest is still very inflamed. I've had burning pain in my bronchial tubes and more general lung pain (possibly pleursy). It's also still harder to breathe in. Inhaled steroids help some - I started on Advair but have since switched to try Alvesco+Incruse (LAMA) since I'm a little concerned about the possibility of bronchiolitis. I'm also concerned it's a little too late to reverse the symptoms and that the breathing difficulties because I can't tell if they are getting worse.

Anyway, hello all. Also, if anyone has any thoughts on what to ask the pulmonologist to help me figure out what is going on or ideas on how to move forward, I would really appreciate it.

34 Replies
HungryHufflepuff profile image
HungryHufflepuff

Hello to you, and welcome 😊 It’s getting on for midnight here and I’m unable to verbalise anything helpful 😴 other than to just say hello and I’m sure you’ll get lots of great advice soon.

TumbleDrum profile image
TumbleDrum in reply to HungryHufflepuff

Thank you so much for the welcome and it is nice to meet you!

Jaybird19 profile image
Jaybird19

W welcome. This is a cheerful and knowledgeable group with many different problems and some one will surely be able to answer your questions.

skischool profile image
skischool

I would suggest that you resist the temptation to try various bronchodilators with or without steroids until you have seen what we in the UK call a respiratory consultant or you in the US call a pulmonologist,given that your CT and PFT's came back clear without any obvious and diagnosed lung condition you may do yourself harm in experimenting with them.Did you have your diagnosis of contracting covid confirmed by a PCR test or are you assuming that you contracted it?,Long covid as it is now called is in its infancy and nobody as yet has a protocol for dealing with it?

I hope you manage to get an answer to your predicament.

regards Ski's and Scruff's

TumbleDrum profile image
TumbleDrum in reply to skischool

Thank you so much for the comment. I had a confirmed COVID case via test in late October and it was the Pulmonologist that prescribed the inhalers. I wouldn't try them on my own :) He just didn't seem to have too much in terms of answers at the moment. My SpO2 is also hanging around the 96-97 range. I'm not sure if that's normal or not. Right now, I'm just trying to document what I can so that I can have information for the next visit.

Damon1864 profile image
Damon1864Volunteer

Hello and welcome to the site 😀 it's lovely to meet you. SpO2 of 96-97 is very good and quite normal so pleased don't worry about that,you could ask you pulmonologist to send you to pulmonary rehabilitation see if that helps. But getting anxious can affect your breathing. I hope you get it sorted and please keep posting let us know how you get on ,have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Timblewee profile image
Timblewee in reply to Damon1864

Thanks Damon, I am glad it is normal. It’s hard when it’s such an abrupt change but good to know that I am not in danger!

Katinka46 profile image
Katinka46

Hello and welcome to this forum. I am sorry you have had all these problems. I know nothing about anything much. But I am very interested in the long term effects of Covid on lungs. I think that one of the big problems is that the whole thing is in its infancy — unheard of two years ago — and doctors are floundering about and trying anything to help. Over here there is some collaborative research between Sheffield and Oxford using Xenon gas MRI to look at damage in the lungs of post-Covid patients. My interest was aroused as the scans look very like the damage in my lungs when I had the same scan. I think it is a bit of a head-scratcher for doctors because CT may not show much. I hope you are well supported by medical professionals and family and friends.

Timblewee profile image
Timblewee in reply to Katinka46

Nice to meet you! Wow, that sounds like a good technology - I will have to see if they have something like that here.

GintyFerguson profile image
GintyFerguson

Welcome to this site and good luck working out with the professionals how to manage your lungs post covid. I'm sure treatments will improve as they develop more targetted approaches to what is a new phenomenon. Eat and sleep well and try not to worry. Stress just makes everything worse. 6 months is not long after a major shock to the body.

Timblewee profile image
Timblewee in reply to GintyFerguson

Good to know that 6 months is not long, only that it feels long.

Izb1 profile image
Izb1

Hi TumbleDrum and welcome to the site. I have managed to escape the dreaded covid for now so cant advise. I have read that it can take a long time for your lungs to recover and believe that the sea air can help. Lets hope your doctor can get you on the right track x

Timblewee profile image
Timblewee in reply to Izb1

I truly hope you can continue to avoid it! We are in Minnesota, so I will have to find some lake air 😀

Izb1 profile image
Izb1 in reply to Timblewee

Oh wow you are quite a way from the coast but suppose the lakes are big enough to feel like the sea. Hope you feel better soon x

CDPO16 profile image
CDPO16

Hi and welcome TumbleDrum, I hope that you get some answers to your problems

Mrbojangles profile image
Mrbojangles

Good Morning TumbleDrum,Sorry to hear you are having a awful time right now but as others have said your respiratory doc will soon land on a solid diagnosis which, from experience, tends to take some time if there are multiple symptoms.

Long Covid i believe throws up various symptoms which you may well have but the doc will expand on that.

I had a chronic cough for 2 plus years with doctors offering all sorts of advice and therapy which didn’t alleviate anything and it wasn’t until i contracted pneumonia they discovered i had IPF which i am pleased to see you don’t as it definitely shows up on thorax CT scans.

Anyway, keep asking the questions and never be afraid of seeking second opinions if you feel you’re not being cared for as well as you should be.

Must go now as i am searching on Google to see what this bright yellow thing in the sky is this morning as i don’t recall seeing it before…!!!

👍👍👍

Ergendl profile image
Ergendl

Hi, Tumbledrum, and welcome to the group. While you're waiting for your Pulmonologist to track down what is going on, may I suggest you try singing exercises to help improve the function of the muscles linked to your breathing. I run a singing for lung health group which has been listed as one of the non-drug forms of treatment for long covid.

In the UK we have a network of singing for lung health groups, and you may have something similar near you. If you don't, take a look at videos on You Tube which demonstrate diaphragmatic breathing.

Hoping you start to feel an improvement very soon.

Timblewee profile image
Timblewee in reply to Ergendl

Haha nobody needs to hear me sing, that’s my wife’s expertise. In all reality, my voice is a little messed up post-Covid too, so I’ll check out the breathing exercises

sassy59 profile image
sassy59

Welcome to the forum TumbleDrum. Nice to meet you. Xx

peege profile image
peege

Hi and welcome. I hope you'll find some answers TumbleDrum if not at least you'll find a lot of support from other lung patients. We've a handful of members who seem to have long covid, one is Natsright who's been documenting her progress over the last few months, another, Sheenama joined in the last couple of days. Perhaps you can share experiences. If I were in your position I'd be taking lots of vitamins and supplements, eating very healthily, exercise little and often, breathing exercises (youtube?), cut out sugars & drink plenty of fluids to give myself the best chance of recuperation & recovery. It could be a while.

Very best wishes to you. Peege

Timblewee profile image
Timblewee in reply to peege

Oh good - I am taking a ton of vitamins and supplements. Most are anti-inflammatory or cell repair related. Any recommendations for what has helped?

peege profile image
peege in reply to Timblewee

Well like many members I take D3 about 3000iu (4000 is allegedly the maximum) along with K2 to ensure much of it gets to bones helps re steroid use and I read ages ago D3 is good protection against covid), a good multivit/mineral and up to 2000mg of effervescent Vitamin C for healing & boost of immune system when fighting bugs.I take a few things for the fatigue of CFS as well - if you'd like to know those I'll send you a private msg .......I'd be surprised if a lot of long covid sufferers don't end up with CFS although I've no idea really (as I'm not a medic or scientist) mine is due to years of constant chest infections and several pneumonia. Just pneumonia alone takes months to recover from so I do very much commiserate with people who can't snap back from covid.

MMaud profile image
MMaud in reply to peege

Peege, have you looked at adding Magnesium to D3 & K2 regime? It is considered a further co-factor.

I have a friend who is over 2 years into Long Covid. She was one of the very early cases and didn't become horribly acutely ill, but has since had it again at least twice and is officially diagnosed as Long Covid, due to ongoing symptoms. Here in UK, those diagnosed with Long Covid, by someone "specialising in it" (I use parenthisis as Covid and Long Covid are so new to have developed true specialisms, in my view), are also diagnosed as CFS - provided fatigue in one of their symptoms.

My friend takes a bucket full of supplements, is on a strictly nutritionally dense eating regime and has recently completed a course of hyperbaric oxygen therapy, which she feels may have helped, but it's really too soon to tell how effective it has been in reducing some symptoms for any period of time. In terms of Vitamin D intake, 4000iu a day is the widely accepted safe level for someone buying OTC. My friend with long covid has been advised by the medics to take a goodly margin more. Her levels are being monitored closely, with the aim of achieving levels well in excess of those considered to be "healthy range" by the general NHS.

It's a whole new field and frankly I still observe the medics feeling their way through, and in some cases being open to trying almost anything.

peege profile image
peege in reply to MMaud

Thank you MMaud, thats really interesting. Yes, magnesium is in my armoury , 375mg every evening. Also B6, B12, & Ubiquinol for the fatigue (at the mo double Ubiquinol of 200 mgs as I've just spent the week with 3 small grandchildren, am shattered) 😴😴😴

Is your friend under NHS?

MMaud profile image
MMaud in reply to peege

She is under NHS care, which she bolsters with private health care. Unfortunately, she has found the NHS to be pretty much "sit it out until it goes", which is quite hard over 2 years in.

The hyperbaric oxygen treatment is a private option.

TumbleDrum profile image
TumbleDrum in reply to MMaud

Wow, thanks for this message. I have actually been encouraged to take around 6000 iu of Vitamin D and do so every day. Also taking B complex, vitamin C, magnesium, zinc, NAC and Tumeric/Curcumin. Basically, it’s everything I can take to help the lungs out. I am not sure if I have Long Covid or lung damage+Post viral asthma to be honest, but it may not matter too much. Thank you for the wonderful information to both of you.

MMaud profile image
MMaud in reply to TumbleDrum

Did you have your Vit D levels tested before starting your supplement? It'd be interesting to see what your 6000iu dose does to it.

My friend takes more than you, on the recommendation of a medic, and is targeting a level of 250+. In UK, the NHS suggest 50+ is an adequate level, but I'm afraid I strongly disagree with that. I target my own levels to be +/-150, although if I trickled over, personally, I'd be unconcerned.

If you are taking Vit D, please, please ensure it is D3, and you also take K2, either in a combined tablet or on it's own. It, along with the magnesium you are already taking is a co-factor in getting the most positive benefits of Vit D. Your vitamin D3 and K2 should be taken with a fatty meal. The Magnesium is less critical.

Vitamin D really is important for so many body/life functions.

I do hope you start to feel better soon, but don't push too hard. My friend has had a couple of relapses from just trying to do too much before her body was ready.

TumbleDrum profile image
TumbleDrum in reply to MMaud

Interesting! It was a functional medicine doc that encouraged me to take the higher dose and it is the first time I have had that encouragement. But then, they specialize in treating disease with a mix of medicine and vitamins (high-dose vitamin c, ozone, etc). So I would assume they are more up on the literature (and they actually believe in vitamins as opposed to most of the primary care docs I have seen).

Dedalus profile image
Dedalus

Hello and welcome to our forum TumbleDrum - Hope the breathing issues will be at least diagnosed soon.

SparkySW123 profile image
SparkySW123

Yes, Tumbledrum. Welcome. It sounds as if you do need some answers. The fact t hatyour oxygen levels are 96-97 is quite amazing. Should stand you in good stead. You have gone through a lot and I admire your courage. Not sure that I would be that brave but then my circumstances are totally different to yours. I've been told outright that I wouldn't survive covid... but I'm still here - alive and just about kicking! Blessings. Christina

TumbleDrum profile image
TumbleDrum in reply to SparkySW123

Thank you for some good news! It’s been a lot to handle, but I am trying to find positivity. The mental battle is probably the hardest part of it, but I imagine most people here know that too.

Timblewee profile image
Timblewee

Oh gosh, I am so embarrassed. Apparently I had made an account my my phone that was different than the computer with two names. Anyway, Timblewee and Tumbledrum are both me. Didn’t know that was the case so I will fix it in a bit

Alberta56 profile image
Alberta56

Hello and welcome to the forum. Be kind to yourself, take it easy while you recuperate.

watergazer profile image
watergazer

Hi and welcome. X

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