I just have a general question has anyone with a Ling condition had Covid? Or knows anyone who has had it with a lung condition and I happy to share their experience.
Basically there isn’t much info for us and I’m so scared of this and want to know how people like are faring- apart from the bad
I’m currently shielding still but it’s been almost 6 months I live alone and want to venture out but just need to be more informed with what I’m up against as a person with a Ling condition.
Thanks for your time.
Hope to hear from you
Mix
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mixmix
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None of what I am going to say should mean you stop taking any of the precautions seriously.
Only a few of us here have been infected and survived, to my knowledge we have not lost any members to Covid-19 yet either. By survived I mean none of us has been killed by it, although there does seem to be symptoms of lingering after effects from it.
I am one of those deemed as clinically extremely vulnerable, I have multiple comorbidities with very severe Emphysema, Hypertension, Ischeamic heart disease, lung cancer and 70 years old. The middle of April both my partner and myself were infected via Sharon's employment in a nursing home, she also has moderate COPD. Sharon had mild symptoms, I had moderate symptoms, which was a nasty experience. Although it was a close thing, I avoided being admitted to hospital and recovered.
Although you hear about people dying with comorbidities, what they do not tell you is what sort of percentage die against those that survive. I cannot give you any guarantees at all because young people without comorbidities have also succumbed to it, although very rare. But you are young and that has to be totally in your favour.
Keep taking as many precautions as you can until a vaccine becomes available and you should be okay. The real vast majority, here on the forum, have not been infected so the precautions must work. You should not be excessively worried or anxious at all.
Of course, I understand that you would love to be able to drop your guard and go out to socialise once more, it will not be forever. You have come this far and a vaccine is hopefully going to be approved for use soon and we should be top of the list to receive it
I hope that I have answered some of your concerns.
I’m sorry you and your wife had to go through this but so happy your here today !!!
I’m reasonably young but have severe asthma- been intubated 20 years ago and have had some serous asthma attacks. To where I’m petrified if my breathing is a bit off!
I work in a hospital and am due back next month - unsure of what to do. As anxiety seems to be winning in regards to this Covid stuff
Unless on oxygen and/or awaiting transplant (which is a tiny number of patients in paeds), all under 18s with cystic fibrosis have now been taken off the shielding list, along with many younger adults who are also relatively well and stable. My 12yo daughter is at the more severe end of the disease spectrum, with a well fev1 of low to mid 70s, diffuse small airway disease, some bronchiectasis, chronic pseudo and fungal infections, underlying tracheomalacia that likes to complicate everything, and two years of her life spent in hospital to date, yet I am now the one considered most high risk in our household as a result of having autoimmune issues. We’ve been told that based on the evidence so far, they would actively encourage her to return to school full time and to leave the house more generally, as long as proper precautions including social distancing and hand hygiene are strictly adhered to. Her team have openly said in writing that they would only support a child with cf not returning to school or college in exceptional medical circumstances.
I replied to something the other day asking about survival for those with comorbidities: as I said then, I realise this is just one condition, and there are lots of factors we still don’t understand regarding who gets particularly ill, but to date, 30 people with cf have had confirmed covid in the U.K. The age range was newborn to 57, with an fev1 range of 18% to 116% predicted, and there has been one fatality. Even more interestingly, 40% of those 30 patients were completely asymptomatic at the time of testing. More widely in Europe as a whole, we know there have been at least 151 patients with cf contract Covid. Of those, 22 had a well fev1 of less than 40%, but in the entire confirmed caseload there have been only 3 fatalities. That means that of those patients with a really poor lung function, a minimum of 19 survived, if not all of them. Only 8 patients have required intensive care treatment. Again, if you make the assumption that those 8 patients were all in the fev1 less than 40% bracket, that still means that at least 11 people in that group caught covid and didn’t require treatment in an ICU despite having very severe lung disease. There were also 19 patients post transplant that caught covid, so again, at least 16 very immunosuppressed individuals have also come through the other side. Granted, when there are 90,000 plus patients in the world with cf, having some data on the outcomes for 151 is hardly definitive, and some of the datasets are incomplete, but the stats so far do give me some reassurance when it comes to the Bod potentially catching covid.
It’s entirely appropriate to be concerned, it’s also entirely appropriate to be cautious in what you choose to do and whether you continue to shield. I personally have limited choice because I’ve been told my daughter is expected to return to the real world to some extent in spite of originally being told to shield, but that doesn’t mean that either of us are back to doing ‘normal’ things. I’m still avoiding shopping in person wherever possible. Other than the chemist and medical appointments, we don’t venture out to actively go anywhere (although we do go out for walks). The leisure centres and things have reopened around our neck of the woods, but we’re not planning on going back any time soon. For me personally, it does have to be a balance, though, because the reality is covid could be with us for a very long time.
Thanks for getting back to me. Firstly you have complete say over your daughter do not let government bully you into sending her back. Homeschooling is an option and some schools are offering teaching via computer so that’s an option.
We know kids normally have germs and colds so this Covid is no different- except it causes a lot of damage.
Only you can weigh up the pros and cons.
You can contact you council and inform them your homeschooling and they will send over work for her to complete. This is of course if that’s what you want to do.
Even before Covid as parents you have options to home school sadly many people didn’t know how to go about it.
It’s not as straightforward as that for us, though, Mixx: alongside the cf, the child is also autistic and has a number of other health and additional needs. We moved 250 miles to access better medical care for her in July 2019, but that has meant her being out of school for the entirety of the last 14 months and missing her first year of secondary school whilst battling with the local authority to find her an appropriate, specialist placement. They finally placed her just before the summer holidays, and the reality is that it’s absolutely in her best interests from a social, emotional and mental well-being perspective to be in school. From an academic perspective, she’s stupidly capable and I have considered taking her out of school in the past (I had acquaintances that used to home ed and belong to the local groups), but she also demonstrates oppositional-defiant and/or pathological demand avoidance type behaviours at home, so homeschooling isn’t even remotely feasible, and her mental health has completely bombed in the last year. As recently as July she was refusing all her treatment in an effort to harm herself. This is what I mean when I say about balancing her no longer being on the shielding list, me still being on the shielding list, and the fact that covid could be an issue for a very long time.
I was on the extremely vulnerable list but shared house with 6 other family members. I caught covid or something similar. I went through a lot of the symptoms and waves where you get better then worse. I got it april 2 nd finished main symptoms early June. Some days I could not walk. A and E said if I could deal with it at home, then if it was not covid It would be better. If I went on ward, then I would probably get it . about 10 days later really severe breathing problems. Paramedics sent and said as I had 3 doses of antibiotics, they would start to work that night. But to call ambulance if I got even worse. I had to sit up all night, feeling dreadful but paramedics right. Breathing got easier by morning. I still get waves of breathless days, but I know others have them too. My oxygen nurse says it takes about 6 months to recover.
As regards going out. I go in the garden daily. Most days I have a short walk with 40 steps then a long rest. I have done that for 90 minutes, on my feet. I really enjoy sitting in a car and seeing places. I have been in 3 shops in the last 3 months, and don’t like going inside buildings. I went to New Brighton yesterday and walked on prom. A lovely day.
In short, stay in open air if possible and 6 ft rule.
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