I have had various tests and scans since Dec 2017 - all my bloods are normal, nothing of significance was picked up from sputum samples. My lung function tests are around 70-80%, so not too bad considering I have mild asthma and one third of my right lung is not working. Based on the CT scans, I have been diagnosed with a rare cystic malformation - Congenital Cystic Adenomatoid malformation (CCAM), also known as congenital pulmonary airway malformation (CPAM).
I have been advised is that this is a very rare malformation since birth, which must have been relatively mild over the years - and it must have recently got more badly infected a few months ago - and thus hasn't healed properly which leaves me vulnerable to regular low grade chest infections.
Therefore, the plan is to remove the lower lobe in my right lung (as this is the only part of my lung affected), via VATS (potentially switch to open surgery if there are any complications during surgery). I have surgery scheduled for 12th June 2018 at the Royal Brompton Hospital in London.
I have never had an operation before, therefore am nervous and am only 32 years old. The surgeon and team have been supportive, explaining surgery is relatively low risk and should resolve the problem. I would be extremely grateful if anyone who has had a Lung Lobectomy or had a similar congenital lung problem identified during adulthood - could help with some advice. What to expect? Tips for recovery? Any further questions I should ask? etc.
Many thanks for your help and support.
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Ron2018
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Hi Ron, it will turn out for the better for you. Suggestions are to get up and about asap, gradually increasing your walking distance, and to make continual usage throughout the day of a flute like device to help clear out and to strengthen your lungs. I used the Aerobika device, and still occasionally do. By the way, I had an open lobectomy to remove a cancerous lobe and cancerous nodes. Please let me know how you are doing after the operation. Best Wishes, judg69
I did not undergo the operation though, as the risks were much too high for me with, Lung Function at 31%, Cardio Arterial Disease, Hypertension and Arrhythmia all against me Sorry I can not help further.
I do feel for you as I had surgery for a congenital malformation of the heart when I was seventeen, in 1961 when intensive care was a nurse sitting by the bed in the main ward taking my blood pressure every 15 minutes. I found the staff then were wonderful and my surgeon brilliant. If you have the same care as I had then, which I'm sure you will, you will be home again before you know it. It will also mean a great improvement in your life and health. I am almost 75 now, and my surgeon then was a pioneer giving me a long life I didn't expect, especially to wish you all the best.
Hi Ron I had lower left lobe lobectomy for cancerous tumour 9 years ago at Guys & St Thomas's. I was 60 then. Everything was straight-forward and I felt fine all way through. I felt no pain at all during recovery (one of the lucky ones) and lung reinflated at first go. Was home four days after the operation (by train(s). Had to have dressings changed couple of times at GP surgery following week(s), which was probably more hassle than the operation itself. I panicked at how breathless I was in the beginning, but after few weeks of going for walk each day I was virtually back to normal (I.e. what I was before). Even the food wasn't bad lol. No reason your experience don't be just as good. Good luck and all best wishes. Please keep us updated.
Your in good hands Ron. I've been there to Brompton for last 6 years. Very good. And even though I've not had surgary. There. I would with out a doubt. Top Dr.s. Iam currently waiting at there Sister. Hos Harefield from poss TX. So. Honest I've had. Lung heart kidney infection. And they really are amazing. They. Truly God like. Now am hoping to get. 2nd hand lungs fitted. ASAP. Some people might think disrespectful but. I've been a Door now over 20 yrs. and there's. Possibity that. If it goes. They. Wrong way. I could be helping some one. And. That's a good thing. But. My. Surgary more involved then your. So. No no worry honest I wish I was havin reduction What's VAT S Try. To. Not get infection. Fresh food only. Plenty. Fluilds in this warm. Weather. Stay. Cool You go in. Just relax. It's lights out next thing they wakin you up they do it more on auto pilot Take care
Hi ron2018, Im not surprised you are worried, at 32 you are young to be having this done. I dont have any experience of this operation so cant advise you, but the people that have replied all seem positive. Try not to worry, just keep telling yourself it will be over soon and think of the benefits. I wish you all the best and keep us updated. Irene x
Thanks all for the good wishes and advice. I am trying to stay positive, and being grateful that the problem has been identified now whilst I am young and relativity healthy. Who knows, what the situation would be if this was 10years down the line, and the condition of my lung would probably have gotten considerably worse.
I will keep you updated with how surgery goes, thanks again.
Hi all, sorry for the slow update it’s been a couple of months and I’ve had a rocky recovery.
Surgery had to be switched to an open Thoracotomy in June. The surgeon advised that this was due to everything being very stuck. Surgery was successful, and I spent two weeks in hospital post-surgery, the main issue was pain management – at times I was in agony. The surgery involved a big cut across my back/side and even a small removal of the ribs.
I returned home and for 10days or so, and begun to feel better but then developed a chest infection so was re-admitted for another three weeks. Initially for a week of IV antibiotics - which didn’t clear things up. CT scan and Ultrasound showed a buildup of fluid outside the lung in the pleura, this was diagnosed as Empyema (infection of the lung tissue within the pleura – outside the lung) Initially a CT guided chest drain was inserted to remove the fluid, this was not successful as the consultants felt the fluid was too thick. Therefore, I had to have another operation in July– which was a VATS lung wash out. Surgery was successful, but two chest drains were left in for over a week – which were very uncomfortable and painful.
It’s now been almost 3 weeks since the second surgery. Breathing has improved and my right lung seems to be inflating a lot better than it was whilst I had the Empyema. I have lost about a stone (6Kg) over the two months, experiencing a lot of weakness low energy levels, my Haemoglobin levels are down from 155 (pre surgery) to 100 due to the blood loss, and the pain is still bad.
Has anyone else been through similar surgery (I guess the Thoractomy) was the big operation, which I am still incurring a lot of pain from. It would be interesting to hear other people’s stories – particular in terms of how long the pain takes to settle? I am experiencing pain in particular at drain sites (front of chest) and across the back (wound incision site). For pain, I am taking Co-codimal 4 times a day, Ibuprofen 3 times a day, and Oxycodone oral (now down to 15 or 20ml a day, 5ml every 5 hours or so). I was taking much higher doses of Oxycodone in June, 60-80mg a day. I find the Oxycodone very good for pain and to improve my mood – it gives a sort of euphoric feeling when I take it, but then when it wears off I feel very low, depressed, and emotional. So this is another worry of mine – developing a dependency for these strong pain killers.
It’s been a difficult two months, I am very up and down – have good and bad days, but trying to be as positive as a can to get through this recovery.
Hi once again Ron. Believe me, you will get better! After my thoracotomy, the rib pain was the worst followed closely by pain from the drainage tube(s). I then proceeded to break 3 of the ribs that were splayed out during the surgery , and that was very painful all over again. Through it all , I was using my Aerobika breathing device at every opportunity throughout the day. I cannot stress this too much. Whatever flute- like device they have provided you , use it , and then use it some more. In my experience anyway, this is how you enlarge your lung capacity and ensure proper pursed lips breathing. And walk , you can start slow and not great distances, but increase the pace and distance as the week's go by . It is not always smooth and easy , but you will get there! All Best Wishes, judg69
Hi judg69. I am going to have a thoracotomy surgery very soon. I am not afraid of the surgery itself but I am scared to death of recovery period. Would you advise me to use an Aerobika breathing device in addition to triflo spirometer?
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Sorry I can not help further.
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