Hello all, I've not been on the forum long but you all seem such a knowledgeable and friendly bunch thought I'd tell you a bit about my lung problem history. At the turn of the century in 2000 I and my family were hit with a horrendous flu bug (We called it the millenium bug!). I developed a really bad cough, could not lie down at night for days. I had a course of ABs and felt better after about a fortnight but the cough remained. All my doc suggested was to stand in the shower(!) and he gave me a Ventolin inhaler. I carried on coughing, exrays showed nothing untoward. I gave up smoking in 2001 and haven't smoked since.
In 2006 (at the age of 53) I got pneumonia - came out of the blue, woke up one morning and could hardly breathe. Chest x-ray showed my left lung was 3/4 full of fluid. They drained some off with a long needle (eww!) and I was admitted, had intravenous ABs and a chest drain. Consultant said scan showed 'pockets of old fluid/pus' on my left lung and suggested it was to do with having chest infections when I was younger, I had whooping cough when I was 10. Smoking, of course, did not help matters. He said they could do an op (think it's called a mini thoracotomy?) which would zap off this 'pus' from my lung and help prevent recurrences of pneumonia in the future. So I was admitted to Harefiield Hospital and had the op - Aug 2006. They made an incision in my ribcage at the back. Recovery was slow and my breathing was definitely impaired after the op. Ever since then I've had what I can only describe as a feeling that a rope is tied round my ribs on the left side - I'm not sure whether this discomfort is due to the pneumonia or the op itself, or both! Docs couldn't explain it and I know of no-one else who's had anything similar. I was ok breathing until 2010 when I started to become breathless, walking upstairs, etc. Frankly I was a bit miffed since I had given up smoking in 2001 and after the op my cough improved greatly. Anyway, my breathing has steadily got worse and I've been told I have COPD due to 'scar tissue' - my lung function is not good, my last FEV1 was 45% and I use Seretide 250 plus Ventolin as and when. The one thing I'm thankful for is having given up smoking - I have a minor cough now with some phlegm now and again but coughing is not a problem now. And I haven't had pneumonia or indeed any chest infection since the op.
Sorry, bit of a long story! I was wondering if anyone else here has had an op like this. If so what are/were your experiences? I've searched the net for any info on this operation, particularly comments from other people who have had this done, and can find very little. Surely I'm not the only person in the country to have had this op! (I know I'm special, but not that special! - joke!). What do you people think?
Janet
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jpscribbla
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Big welcome, Janet. I read your message with interest. Nothing so dramatic for me, but pleased that you decided to contact us. I am sure you will get a more helpful reply. Reading your experiences, I have often wondered what actually goes on in my lungs. I have bronchiectasis, COPD and asthma, so there must be a lot of rubbish.
This is a great forum with friendly people so perhaps one of them will come forward to talk.
I had a left lower basal section lobectomy in 1963 and as I understand it from others who have had it more recently it is now less traumatic. If I remember correctly there was someone on Bronchiectasis R Us who had it done keyhole and recovery time was much shorter. In fact a member keeps a list of all members who have had surgery and there are quite a lot of us (bronchoscopies do not count as surgery). Unfortunately this surgery did not prevent me from having pneumonia again and again. They wouldn't have done it on me nowadays as at the time as now my bronch was scattered in both lungs.
Great news you haven't had pneumonia or lung infection since you surgery - brilliant. Sorry though you have copd. I'm sure you are still special.
Thank you all for replying and your warm welcome. Annieseed, yes, if only we could look inside to see exactly what is going on in our lungs! You certainly seem to have a lot to deal with. I hope you are getting effective treament. Interesting about Bronchiectasis, my consultant said I had some of that in my right lung - he said that it wasn't much to worry about.
Cofdrop that sounds like a drastic op you had in 1963 - as you say, the treatments now can be much less invasive. It must have done you some good as here you are 50 years later! I'm sorry to hear you had further bouts of pneumonia, I wonder why? I should count myself lucky that this op has been effective on that front. Interestingly, when I first went into Harefield they told me it would be keyhole but later changed their minds and said they'd be doing a 'full on' op albeit cutting into just a small section of rib. When I woke up I felt ok, dosed up on morphine and attached to two chest drains. The following day they expected me to be able to get myself to the loo, carrying these two buckets attached to my side - very optimistic! They threw me out after four days saying that patients recover quicker when they're at home (or maybe they just needed the bed for some other poor soul!). That was also very optimistic, I could barely walk or breathe but hey ho you have to get on with it don't you? I suppose the scarring from all that is now taking its toll.
Thanks Puffthemagicdragon (great name!) for your welcome too.
I looks Like you had a similar to me. I had an infection on inside and outside of my lung and it had compartmentalised to such a degree the big comedy needle was no good once they took 15ml of fluid out with a 1cm blood clot. I ended up with 2 chest drains and they got 3.5 litres of fluid off my lungs in the first day and a litre minimum every day after. I was transferred to another hospital with a police escort to have a similar operation to you but they decided I would not of survived it and put me on an Oscillator for 10 days Which has a 48% mortality rate. I had 6 units of blood one day because my lungs decided to have a good bleed out. I was in ICU for 32 days and a coma for 12 of them. I was about a year before all the fluid went. If I breath deeply I can still feel my ribs/chest cavity touch because the infection stripped my skin and exposed my nerves. This was in July 2008.
I'm surprised none of you have been offered the pneumovac. I know it is available for over 65s, but I had mine in my 50s (I'm only 62 now) after a bout of pneumonia!! Well, they thought it was pneumonia - but I didn't have any fluid drained of my lungs. After this, they treated me for asthma for 3 years before sending me for a CT scan and lung function test. I have Bronchiectasis with Pseudomonas and possibly a small element of bronchitis and they still aren't sure if I have asthma as well!!
Hi! Just wanted to say Hello! I have had double pneumonia twice as a child. I had a TB test at school and it said I had TB at some time. The specialist thinks when I had pneumonia it killed the TB. I have got mild asthma. I did however have one really bad attack that scared me. I always use my inhalers now. Nothing quite as dramatic as having a lung operation. Sorry I can't help.
Thanks for sharing your experiences, very interesting. Offcut what a hard time you had, good grief! I don't know the exact amount of fluid they drained from me but it did shock me how all that liquid in the buckets had been in my lung. I remember it was actually very slow to drain, like you say, it can take a long time for the residual fluid to disperse. It seems with me there had been some old, stagnant fluid lying around in there for some years which was probably the cause of the constant coughing and risk of future pneumonia. Having read your experiences I'm starting to realise how lucky I was to have had that op and that it was relatively straightforward.
Poemsgalore I've not heard of the 'pneumovac', what does that entail? I'll google that and see what comes up. I do know of people who've had pneumonia but not had to have fluid drained. Mavary your experiences are also interesting, how rotten to have had pneumonia twice as a child. I suppose some of us must have been born with a susceptibility to lung problems. My mother tells me that when I had measles as a child I developed a bad cough too, unlike my brother and sister who did not. Same with the 'milenium bug' which the whole family got - I was the only one who ended up with the horrendous cough.
I think Poemsgalore is referring to the vaccination against pneumonia. If you haven't had it do have it ASAP. I had pneumonia 4 or 5 times in less than 2 years before I had the vac. and I've not had it since. I also had measles badly as a child and wonder if that's where some damage began.
Your story is very frightening so I sincerely hope you can get a definitive diagnosis soon. Have you had a CT scan?
Wish there was more education about lungs so that people would have better choices about how to look after them.
Hi Peeg, thanks. Sorry, I didn't understand the word 'pneumovac' (doh!). My surgery haven't suggested this vac but I'll look into having it done. Regarding a definitive diagnosis, this is a real sticking point with me. I'll come clean and tell you that I'm actually too scared to have a CT scan. Haven't had one since the operation back in 2006. I've been suffering from panic attacks for about a year now, associated with my lung problem. Logic and reason tell me that having a scan is what I should do. Many people here seem to take them in their stride but I'm just too scared - I'm scared of what it will show.
I know that getting an accurate diagnosis may help target the right treatment but it terrifies me. I think I'm in denial, as they say! I really don't want to be told I have emphysema and know about the state of my lungs - although I'm reminded of it every single day. Doctors are so direct and blunt and I'm a bit of a weakling so I know I'll break down. I'm afraid I am a coward. I've had some CBT treatment for the panic attacks which helped but this terrible fear remains. Sorry to sound so negative. I envy you people on this site who are so stoic and brave and take it all in your stride. I just don't have that strength. I'd better stop now, I'm getting a bit upset.
Janet x
Sorry, I probably spelled it incorrectly. You can read all about it here: en.wikipedia.org/wiki/Pneum... If you have a respiratory consultant whose clinic you attend, it might be better to discuss it with them first. I find that a letter from a consultant usually does the trick, although my GP is great.
Hello! I'm new to this site and just read your story, your right I've been searing the web myself and there's not a whole lot out there on this! My heart goes out to you! In 2007 I was given a back injection by a doctor who ultimately gave me a staph infection. I ended up with a para spinal abscess, psoasis muscle abscess, 2 inch dural tear which lead to meningitis, I had to have back surgery and have all the bone and disk taken out from l3-l5 and no hardware couple be put in b/c of the infection so I'm basically left with no stability of my lower back now. From there the infection spread to my right lung where I developed pneumonia that then developed an empyema. I ended up having to go to surgery for an open thoracotomy because the infection was too bad. Two broken ribs later, and three chest tubes and one empyema tube and I was finally back in the cardiac ICU where I stayed for another month. After that I went home with a pic line where I gave myself antibiotics 5 times a day for the next three months and then after going through 5 more spinal taps to make sure the infection gone I was finally cleared. What I'm getting at in that none of the thoracic doctors when I asked then could tell me what risks I would be at long term after this surgery (they removed the whole inner lining of my right lung. Because I was concerned my husband (who is a physician, I'm a nurse) decided it would be best to give me the pneumovax to be safe. Well I guess I'm not so lucky fast forward to four weeks ago I get this really bad chest cold, running a fever, headache, neck pain, my husband keeps telling me it's just a bad cold (doctors are the worst with their family they never take them seriously) my chest pain kept getting worse, I was getting more and more short of breath, couldn't lay down at night, I just knew it had to be pneumonia and my husband just kept saying there was no way it's just pleurisy from your cough yada yada. Anyways long story short I went to my doctor yesterday who immediately sent me for an X-ray I hadn't even left the X-ray department yet when my phone rang and it was my doctor calling me to tell me that it WAS PNEUMONIA and in my bad lung! They put me on a whole slew of meds, and I have to get a repeat X-ray in a month but now I'm concerned because a.) obviously getting the pneumovax didn't do me any good because I just got one of the strains it didn't cover, b.) how lung function am I going to lose c.) this went on for a month before it was treated I'm worried if it gets worse and I develop another empyema what's next? I'm only 38 I have a 4 year old son at home and this scares me to death because he is my world! And this all started because some stupid doctor made a big mistake while giving me a back injection. Anyways sorry for babbling on! I just needed to get this off my chest j/k hope things are going better for you jpscribble!
had both lungs collapse and breathing reallhy difficult and on oxy. for most of the day. When in Royal Brompoton had to have chest drain etc. etc. felt so weak and could not walk. so I so feel for you but honestly don;t know what you had done. (guess you must be special) but unfortunatly one does not get much information from the consultants (I do feel this is so essentail to a patient to know what is going on ) I feel for you and sorry I can not help you on this one. I wish you well
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j/k hope things are going better for you jpscribble!
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