Permanent Lung Scarring from Pneumonia - Lung Conditions C...

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Permanent Lung Scarring from Pneumonia

Pookyal profile image
23 Replies

Does anyone on here have experience of permanent lung scarring (in this case caused by flu/bacterial pneumonia)? How long did it take for the scarring to develop or the extent to become known - was it months or weeks from onset of pneumonia? Some of you may have seen my other post about my dad currently in ICU. He had another Dr today (with a similarly terrible bedside manner) apparently saying an earlier CT indicates extensive lung damage and that he could end up with a combined lung capacity of 1 lung. He was very negative, to the point my dads nurse actually complained about his approach to her superiors. He gave little/no hope for the future and left my dad feeling like there was nothing more they could do for him. I thought he was making good progress - he has been on strong steroids for the 24/48hrs and his SATs have really improved from 88% to 95% O2, so they must be doing something? The steroids have been administered since the CT was taken.

I assumed, perhaps wrongly, that the extent of any permanent damage would be impossible to say at 6 weeks and that the real prognosis would only emerge over months? I know scarring can be a possibility, but also that lungs can heal pretty well, even after very severe pneumonia.

Apart from a bit of a download, I guess I am also asking for experiences of what operating on 'one lung' would mean for him? I am really struggling to find anything online which indicates the impact it can have on quality of life. Are we talking oxygen therapy 24/7 or simply not being able to do as much as he could before in terms of exercise/physical activity?

He is hopefully heading to the respiratory ward tomorrow where I am hoping they will be a little more circumspect about his chances/future.

23 Replies
Littlepom profile image

well, just to let you know that I have been living with 45% lung capacity since I had 6 bouts of pneumonia before I was six years old. I am now 72. The damage left me with a condition called bronchiectasis. There are several on the forum with this due to pneumonia and we have all led and still lead very full lives. That doctor was awful to speak to your father like that and certainly showed his ignorance of lung conditions. When he gets over his pneumonia your father needs to see a proper respiratory consultant who specialises in bronchiectasis. Then his ct scans can be interpreted properly and a plan for his ongoing self and medical management can be made. His sats are good. There is certainly hope for a good outcome for your father. Ignore the idiot and go looking for proper professional help.

Pookyal profile image
Pookyal in reply to Littlepom

Thank you so much. This gives me so much hope. Its great to hear such positive stories.

B0xermad profile image
B0xermad in reply to Littlepom

Fantastic reply Littepom

B0xermad profile image

I had pneumonia twice and several bad chest infections before being diagnosed with bronchiectasis in 2014 but suffered a lot as a child with bouts of respiratory issues but was undiagnosed until age 54,so all the scarring from each infection takes its toll and can take up to 6 months to recover from but always leaves a mark on you but I am alive and kicking still 8yrs on with good medication and positive attitude is hopefully going to help my future wellbeing. Good luck for your father's ongoing recovery

Verbena_67 profile image
Verbena_67 in reply to B0xermad

Hello. What meds are you taking to improve your lung function? Also, do you exercise. Or, at least active in your day to day activities?

B0xermad profile image
B0xermad in reply to Verbena_67

Hi I take montelukast, seretide ventolin azithromycin and nacsys 600mg effervescent tablets. I walk my dog and go to a blf gym once a week

Izb1 profile image

What a horrid doctor. I am all for facing problems but goodness your Dad needs encouragement right now. Littlepom has given good advise and I would follow her suggestions. Your Dad needs lots of tlc and proper care not some doom and gloom doctor x

O2Trees profile image

Medics can be awful Poolyal. I told you about the head physio who said I would not regain my previous fitness, yet I did, in previous reply. Im glad your father is going to the respiratory ward - that in itself shows the progress he is making. I agree he needs a specialist in bronchiectasis - dont settle for anyone less. Take care, both of you :)

Mooka profile image

I had a chest x Ray on my last respiratory appointment which was 4 weeks since I had pneumonia. I was surprised when my consultant said exactly where the pneumonia had been (he’s at a different hospital from the one I went to when ill). The x Ray still showed the pneumonia on my lung quite clearly. He said there tends to be a lag before it clears from x Ray. Littlepom is correct he needs to see respiratory doctors that know what they are talking about.

Patk1 profile image

I'm not a dr, but its too early to sure he will be referred to a respiratory specialist who will b the best person to help dad manage not read dr Google or any online info! One day at a time, being positive for dad is best

Stratos20 profile image

Crap doctor. His lack of empathy should be reported.

I have one lung and one lobe. The two lobe lobectomy was performed when I was 5 years old. Rigorous self management is needed to keep me going. I do postural drainage twice daily. More when I get a chest infection. I take the medication and just get on with it.

At 5 years old my parents were told I probably wouldn’t see 7 years old. At 7 they said I could make early teens. I’m 73.

Let your father know it’s certainly not the end of the world. He needs to stay positive. Best wishes, Diane 😊

Mavary profile image
Mavary in reply to Stratos20

You have done really well to prove them wrong. My Sister had Rheumatic Fever when she was young. They said she wouldn’t live a long life and she could never have Children. She’s had four Children and is now 83. It just goes to prove they were not always right. Back in those days they never had so much knowledge anyway. But you are doing fantastically well. Well done!

Mavary profile image

Hi Pookyal. I can relate with the lung scarring after pneumonia but not to rhe extent of your Dads. I’ve had pneumonia four times in my lifetime so I should have expected something. I knew I couldn’t run or do anything like that. I can remember running up the beach to reach my Grandson after he had said something cheeky. It was only a bit of fun but it wasn’t very far only as far as running across a road and when I got to him I had a job to breathe. I knew then that I had a problem. I’ve now got and have probably always had Aspergillosis which I believe is an allergy to a fungus everyone breathes in every day. I’ve not long got over an attack due to the Drs changing my inhaler and trying to get me to have a half dose. My breathing is still not good and that was before Christmas. My Husband had Pulmonary Fibrosis which is a different thing again but is lung scarring. It might pay to ask questions about Pulmonary Fibrosis o maybe Idiopathic Pulmonary fibrosis. It’s probably nothing to do with that but you could ask the question.

I believe you can function quite well on one lung but obviously he would have to be careful not to get another infection. I’m not medically trained and this is only what I believe but ask questions. They are very good if they think you know a little bit.:

Alberta56 profile image

My sister in law has had only one lung for most of her life. She lost one to tuberculosis. You would never have told until fairly recently, but she is 87, so surely entitled to slow down a bit. I hope your father will not be discouraged by these insensitive and ignorant doctors. The last one's comments reminded me of Frank Drebben in ' the Naked Gun,' though Frank was not a doctor, thank goodness. The human body is overengineered, so we have spare capacity to cope with loss of capacity in some of our organs. PS I remember going on a long and somewhat strenuous walk with sis in law when she must have been in her early 70ies. She was a bit puffed but kept up with the rest of us. Attitude has a lot to do with it, and it sounds as if your dad has plenty of that.

Karenanne61 profile image

Your Dad's met some very negative doctors! My nan had a lung removed in 1948. She continued her busy life and fell pregnant with her 4th child in her 40s. Although advised not to, because of her lung, she continued with the pregnancy and lived till her late 80s. She was never still. There are many people here with very low lung capacities whose lives are very full. It's all a terrible shock for you and I imagine you feel like my daughter did. You and your family need time to sit and chat and digest everything. There are so many positive, helpful people on here so keep asking. X

jackdup profile image

I am sorry to hear how your dad and you were treated. I am not a doctor but would be surprised at this point if they can accurately say what there will be for permanent damage. I sure hope the respiratory ward will be a little more positive and encouraging. Please let us know how things progress and hope and pray the permanent damage to his lungs will be minimal.

Pookyal profile image

Thank you everyone - amazing responses which have really kept me (and dad) going. They have now moved him to the respiratory ward which in itself is a good sign. He seemed pretty well, all things considered. Now a whole new level of anxiety though as in a bay with 6 people and loads of visitors with no masks. Turns out, the Drs in ICU were basically asking him to sign a DNR in case he got another infection as his current capacity is quite low (as well as highlighting risks going forward). Never spoke to us, despite being there every day. Caught him at 9.30pm last night, day before discharge, as if to say "when you leave us, all bets are off". Although he said he understood what they were saying, he is clear he did not agree to it, yet it is now on his record. We went spare! My sister is going in first thing tomorrow to see his new consultant and get them to take it off. We are totally realistic about the situation should he acquire another infection, but we want the conversation at the time, not some Dr making an arbitary decision in our absence. It is all very worrying. He is a nervous wreck about acquiring something, and cant understand why they are on the one hand saying he is extremely vulnerable and they dont want to treat him if the worst happens, yet put him in such an exposed situation, I dont know what stats are for HAIs on the wards, but it cant be helped by the lax approach to masks etc?

Patk1 profile image
Patk1 in reply to Pookyal

I'd be concerned to come out of icu to that ward while winter infections are high x

Verbena_67 profile image
Verbena_67 in reply to Pookyal

I know this doesn't mean much, but my dad nvr caught anything. Ppl coming and going all day.

Pookyal profile image
Pookyal in reply to Verbena_67

Thanks. I guess/hope it's not a certainty. 🙏

Mavary profile image

when I was in hospital they asked me if I would have a DNR. I’ve got Osteoporosis very badly and I’m sure if they were to press on my chest all my ribs would break. I wouldn’t survive that anyway. If it means medication then yes I would want to live. Not everyone is like me and it’s up to the individual. My Husband had a DNR but when he died they still tried to bring him back. I never told them not to. You want someone to survive no matter what. My boys weren’t too happy I’d done it but it would be for their sakes too. Nobody can tell you a right or wrong way.

JJ_7 profile image

I can tell you a little about myself as I have multiple lung scars and nodules as a result of Pneumonias. I am a patient of the nodule clinic and they monitor my scars/nodules yearly as they tend to develop into worse if given the chance. I also have multiple Bullae which in essence are dead patches in the lung.

The only thing to maintain my health is excercise and medication. Oxygen has been suggested but I don't think I am needing it yet. I don't know your father's prognosis as we are all different. However, the fewer admissions for Pneumonia the better the prognosis. I had numerous admissions and I have never returned to my baseline of 7 years ago.

Having said the above, I am still here annoying as many people as I can ;)

Hope your Dad fully recovers.

BionicLady profile image

Just like Littlepom, I got pneumonia but didn't get diagnosed with Bronchiectasis until some ten years later but that's only because it was never picked up until I went severely downhill. So nearly 25 years later after diagnoses I'm alive and kicking and live a full life. I get ill from time to time, don't want to sugar-coat anything but that's how it is for me and I have accepted that.

Your father's treatment has been appalling and I really do hope he's OK and he gets the help that he so clearly needs, I wish him a speedy recovery.

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