Life with one lung - 1255867

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certain spring
Life with one lung - 1255867

I should be very grateful to hear from anyone who has had a lung removed, or from their friends and family, about their experiences of life after surgery. I am in a situation where a pneumonectomy is being discussed. I am very doubtful and scared of the possible long-term pain and breathlessness. I realise that people's experiences differ wildly, but would value any input nonetheless. The doctors have been very explicit about the risks associated with the actual surgery, so I feel well briefed on that - it is life at home that I am concerned about. For what it's worth I am 49, swim twice a week, and am already short of my left lower lobe (not through surgery but through shutdown). So I am used to restrictions but in my current state I can still (with some difficulty) climb a few flights of stairs, run for a bus (just) and go for a reasonably long walk.

mikem
Reply To: Life with one lung

Hi CS,

I have been following you for a long time and am glad I have a chance to contribute some information. I had my right lung removed 2 1/2 years ago. I'm not sure how much this will help because I am probably the textbook for what surgeons hope will be the residual effects from the procedure. I was reasonably fit as you seem to be going in to it. When the surgery was done and I was recuperating in the hospital they couldn't get any phlegm to come up because there wasn't any. Everything was and remained clear. I only was on oxygen aid for a couple of days and while still in the hospital the PTs had me doing a flight of stairs a few days after surgery.

As for long term, stairs can make me breathe hard but I recover pretty quickly. I exercise at least 5 days a week either weights or stationary bike and I feel almost as good as I did before the surgery. When I got home after surgery I started walking around the neighborhood several times a day, short distances at first and kept adding to it. I also used the inspiramoter religiously as instructed. I believe it helped a lot in getting my remaining lung to build up.

"So I am used to restrictions but in my current state I can still (with some difficulty) climb a few flights of stairs, run for a bus (just) and go for a reasonably long walk." --CS This is where I am currently as far as what I can do. So you might be able to do less than that once you recover, however, they discovered after they removed the lung that a big chunk of it was already not working. If nothing my story can show you what can be, and in reality my life hasn't changed from losing the lung, I just breathe a little harder when I do things. I hope this helps and I wish you lots of luck with what you decide. You have been through so much already, and deserve a break. --mikem

mikem
Reply To: Life with one lung

Sorry, a little more to add. I realized I hadn't touched on pain. There was pain after the surgery but it was bearable with the meds. It felt like my chest and the area where they opened up for removal was just basically inflamed. Everybody has a different pain threshold but after the hospital the only things I took for pain was Tylenol. I probably could have taken more pain meds but I really hated the woozy effect from them so I steered clear of them. It took several weeks for all of the pain to go away but it did start to fade some after about a week. The only assistance I needed when home was if I was laying down, I would grab my partner's arm to pull myself up to a sitting position. I don't want to minimize the pain because it was real but it does go away. I was back to work in 6 weeks, but should have waited until the full 8 weeks I was allowed. Got tired pretty easy at the time.

An oddity they don't talk about much -- your chest cavity and the ribs surrounding it will shrink a bit because the lung is gone. This will cause, or can cause a bit of scoiosis. In my case the residual effect of that has been a chronic but not bad upper back pain on occasion, but not so bad that I have to take meds for it. --mikem

certain spring
Reply To: Life with one lung

Really helpful to hear of your experience, thanks so much for going into details.

laya d.
Reply To: Life with one lung

Hi cs:

I can tell you a little bit about my Mom's experience with a pneumonectomy. Right after surgery, I was allowed to go back and see her. I was very surprised that just an hour or two after surgery, she was perfectly comfortable breathing room air and had no supplemental O2.

After she was discharged from the hospital and came home, she was OK on the pain front. She was slow moving for a while, especially when going upstairs. Initially, she proabably could walk about 2-3 blocks before having to sit down to rest for a few minutes. Things proceeded this way for about 2 month. In the interim, she had to start concurrent chemo-radiation for 9 weeks - - which completely wiped her out. A month or two after chemo-radiation ended, she was able to do most of her daily errands - - supermarket shopping, cooking, cleaning, playing with my kids...and was able to socialize. We ultimately enrolled her in pulmonary rehab, which was GREAT - - and she improved even more from a breathing standpoint after that (I totally recommend pulmonary rehab). Again, overall (from a breathing stand-point), my Mom had a very good couple of years before disease/progression in her left lung started to make things difficult for her. But, before that happening, she did not get winded doing ordinary activities (no - - she was not running marathons) - - she even danced the night away at a surprise birthday party she threw for me. She also was able to travel and partake in most things touristy (with little rest breaks throughout the day). So, I would say that her recovery from the pneumonectomy was not necessarily fast, but it was steady - - and her quality of life was relatively good as far as breathng was concerned for most of that time.

The BP fistula and disease progression in her remaining left lung are what later caused problems for her.

Anyway, I hope this was helpful. . .

Laya

catdander
Reply To: Life with one lung

While reading about surgery when it was an option for D there was a discussion on pubmed about bronchial stump coverage during surgery to lessen the possibility of BP fistula. Just curious if that has become standard practice or no or what. Sorry cs, just another question.
Always all the best,
Janine

certain spring
Reply To: Life with one lung

Laya, thanks so much for responding. I wondered about your mother's experience but did not want to ask directly in case it was too recent and too painful. But I am really grateful to hear about it and it is helpful for us. (I just read your post and Mike's to my husband - neither of us know anything about surgery as it was never an option for me.)
I am influenced by the fact that one of my brothers had a lobectomy (not for lung cancer) a couple of years ago, and his recovery has been difficult, with long-term pain and fatigue. On the other hand, I think I might be physically more resilient than him, and I certainly take more exercise.

laya d.
Reply To: Life with one lung

You're very welcome cs. . .and please do not ever hesitate to ask me anything about my Mom's experiences. That's a big reason why I'm still here.

Janine: For what it's worth (& whether right or wrong), I feel that I am a non-medically-trained "lay expert" on BP fistulas at the stump - - particularly given what my mom went through, all the research I did on the subject, and all the opinions & 2nd opinions & 3rd opinions we got on the subject for more than 2 years. Here is what I can tell you. Covering (or encasing) the bronchial stump with a muscle flap greatly reduces the incidence of BP fistulas and is what cadio-thoracic surgeons are trained to do. However, this is assuming that there is enough of a stump left to do this. My Mom's right main brochial stump was only 2 mm long. The surgeon tried to wrap a muscle flap around it (at least he told us that he did), but the muscle flap was not apparent on subsequent imaging (months later). We were told that it was possible that the muscle flap had shriveled up so that it no longer was visible on CT (hmmm...) or that the surgeon actually couldn't wrap the stump with muscle because it was too short. So, who knows. In any event, my Mom's BP fistula was very small and right beneath the area where the muscle flap should have been (at the bottom base of the stump). I also can tell you that although BP fistulas are uncommon, they usually are associated with pneumonectomies of the right lung rather than the left (not to say that they never happen on the left). This apparently has something to do with the particular anatomical structures of our bodies (the details of which I can't recall right now and way above my pay-grade here :o) ). BP fistulas at the stump also are more common in radiated tissue (be it pre-surgery radiation and/or post-surgery radiation). We were told that radiated tissue sometimes can have a bacon-like brittle texture - - and therefore is more prone to cracking. (continued)

laya d.
Reply To: Life with one lung

(continued)...Although my Mom received radiation to the area beginning about 6-7 weeks after surgery, her tissue was never described as such each time they went in to check. Her tissue always was described as being pink and supple and healthy.

Anyway. . .hope this helped. . .

Laya

catdander
Reply To: Life with one lung

thanks for clarifying Laya. As it happened there wasn't reason to go much further in my reading once D was dx stage IV. It sounds as if covering is the norm, perhaps a fairly recent technique.

You're terribly sweet and strong to help us like this.

double trouble
Reply To: Life with one lung

Not to throw a wrench in the machinery, but... I seem to recall the surgeon at Duke telling me that a muscle flap is not necessary if the stump is short enough? Just putting it out there for discussion.
Debra

laya d.
Reply To: Life with one lung

No wrench here, Miss Debra. . .I think we are saying the same thing. I think if the stump is too short, they can't do the procedure. There also may be other reasons why this may not be an appropriate procedure for a particular patient. But, it appears that they have found that doing this procedure helps mitigate against the occurence of BP fistulas: http://ats.ctsnetjournals.org/cgi/content/full/79/1/284

As the article states in pertinent part, "Postpneumonectomy bronchial fistula remains one of the most serious complications after pneumonectomy, and there is proven evidence that a number of patient-related factors as well as factors related to the operative technique are important for its development. In particular, patients undergoing pneumonectomy, who in addition receive adjuvant or neoadjuvant therapies, do have a clearly elevated risk. The extent of the surgical resection and the need for additional therapies are determined by oncologic principles, however, and direct influence on the prevention of PBPF can therefore be made only by the applied technique for closure and coverage of the bronchial stump.
A large number of publications have dealt with this problem in the past, and especially the need for bronchial stump coverage has been emphasized repeatedly, although no prospective randomized trial on this question has ever been published. Several years ago, we reviewed our personal experience with routine coverage of the postpneumonectomy stump with various tissues. The flaps used included pleura, azygos vein, intercostal muscle, pericardial fat pad, and pericardial flaps; and the overall reported incidence of PBPF was as low as 0.8%. Since then, our preferred technique for bronchial stump coverage has been the use of a pedicled pericardial flap..."

xoxo,
Laya

certain spring
Reply To: Life with one lung

Still keen to hear from people about their one-lung experiences, good or bad.
I had a lung collapse at the weekend and just today a bronchoscopy that did not work, so it feels like A Hard Day's Night here.

double trouble
Reply To: Life with one lung

CS, I can't imagine what you are going through. The only regular members that I remember to have had pneumonectomies were Mikem and Laya's mom. I hope you get more comments from others. Maybe adding some tags to your post will bring some new blood into the discussion, though I can't think of any that you haven't used already. But you're a lot smarter than I am.

Much love, and holding you in my thoughts constantly,
Debra

P.S. Laya... I love you too sweet child.

Dr West
Reply To: Life with one lung

The experience really varies from person to person. I can tell you that I have several patients who have undergone a pneumonectomy and are living very well for years and years after it, really without limitations in their activities and lifestyle. We certainly don't take that for granted, but it's absolutely possible.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: Life with one lung

Thanks, Debra and Dr West. I know it varies from person to person but that's precisely what I'm trying to get at - the spectrum. Just as, with chemo, you have people laid low and people going back to work the following day.
Dr West, may I ask if any of patients you are thinking of had radiation prior to their surgery (at any distance of time)? There is a lot of worry swirling around about the impact of the radiation on post-operative healing.

Dr West
Reply To: Life with one lung

I'm having trouble thinking of someone who had a pneumonectomy after prior radiation or chemo/radiation. I understand the concern about that, and I'm sure we'd have the same hesitation. I think we'd likely favor a pneumonectomy in that setting only if we really felt backed into a corner with no alternatives.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: Life with one lung

Thanks Dr West.
My oncologist described getting the radiation-damaged tissue to heal as being "like trying to stick bits of wet loo [ie toilet] paper together". The surgeons don't seem so concerned.
I think they all feel backed into a corner. I certainly do.

watu
Reply To: Life with one lung

Certain Spring, I'd like to share with you my dad's experience too.
In his case, it was a "completion" pneumonectomy (after a lobectomy 9 months earlier), which made things slightly more complicated during the surgery, apparently bacause of the "adhesions" resulting from the previous surgery and that could generate additional bleeding. Anyway, this does not apply to your specific case.

Everything went well and he recovered fairly soon. Pain was never a problem. In the hospital, they kept him with a catheter injecting an anti-inflammatory drug directly in the area of the surgery. At home, he continued with just paracetamol for a few weeks.
Pulmonary rehabilitation was key in the recovery of a good level of breathing and you need to be patient and constant for several weeks until your remaining lung is fully capable of partially compensating the absence of the other.

How is life with one lung? My father has been doing well. He's 71 now and, before the recent progression of his disease, he could take very long walks with absolutely no problem. He usually feels some SOB after climbing the stairs in our house, but I'm sure it would be different if he only did some more exercise.

The only thing that went wrong during the surgery was that they cut a nerve associated with one vocal cord and his voice has never been the same since then... but I believe this is just a minor aspect of the whole story.

Good luck.
Mike

certain spring
Reply To: Life with one lung

Thanks so much for sharing your father's experience - really useful and much appreciated.

natjohnson79
Had my left lung out two

Had my left lung out two years ago. I regularly walk 10km in 90 minutes. Can't run too far at this stage and can play some sports without much hindrance. 38 years old.

JimC
Hi natjohnson79,

Hi natjohnson79,

Welcome to GRACE. It's great to hear that you're doing so well after surgery and (as your profile indicates) that you haven't needed any further treatment since the pneumonectomy two years ago. Thanks for sharing your success story, which provides encouragement to many GRACE users.

Wishing you continued success,

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

natjohnson79
Can now run 800 metres non

Can now run 800 metres non stop alternating between 800m walk and 800 run for about 3km. At this stage I am two years post surgery. I after being dragged out to things that made me run have persisted with some light running a few times a week and see improvement. I have only had one follow up post surgery and there were no issues. I am a mid 30s who was reasonable active when diagnosed. Within three weeks of surgery I was able to walk 3km around my rather hilly suburb with one place after a hill top leaving me short of breath.

catdander
Hi natjohnson,

Hi natjohnson,

It's great to hear you've done so well after a pneumonectomy. You're a real success story, congratulations! You remind me that I've got no excuses for not working out.
Best of luck and thanks for your input.

Janine