Elaineec Posted March 14, 2016 Share Posted March 14, 2016 Hi! I'm new here and soooo glad I found you all! Even though none of us really wants to have to be here. I am scheduled for a lobectomy in less than 2 weeks. Originally the surgeon thought he'd have to remove my entire right lung but after an MRI he now thinks he can save the inferior lobe. Quite honestly, I'm terrified of this surgery (open lobectomy with removal of tumor in mediastinum) because everything I've read talks about 1. how painful it is and 2. how long and difficult recovery is. I would appreciate if anyone would care to share their lobectomy recovery story. I just need to know the unvarnished truth - should I prepare myself for a lot of pain? Can I sleep on my back? Will coughing be horribly painful or mostly tolerable? How long did drain(s) stay in? How long were you in hospital? Any complications? When did you feel like your old self again? Are you out of breath all the time? Thank you for taking time to read this and, I hope, to answer. Elaine in CT (I go to Dana Farber in Boston so surgery will be at Brigham & Women's) Link to comment Share on other sites More sharing options...
Tom Galli Posted March 14, 2016 Share Posted March 14, 2016 Elaine, I didn't have a lobectomy but a pneumonectomy - a removal of my entire right lung. My experience ought to provide some "unvarnished truth." Pain - not while you are in the hospital. First several days, and this might be different for you because as I understand it, a lobectomy can be less traumatic, you will have a morphine device hooked into your IV. You are encouraged to push it when you feel the slightest tinge of pain but it will only administer once every 15 minutes. Doctors or nurses that need to move you, will tell you to push the morphine a couple of minute prior to movement. You will feel no pain. When the IV rig is dismantled, you will have pain meds available, both short and long duration, during you recovery stay - 5 to 7 days, normally. Sleeping position - Yes you can sleep on your back, but the nurses will place pillows on alternating sides to minimize bed sores (at least they did that for me). Coughing - I don't recall coughing after my surgery. I may have but the morphine blocked the pain. Chest Tube - mine was removed 1 day after surgery. The surgeon and his PA short counted me. Said they'd pull on 3 and pulled on 2. Didn't hurt a bit. I had three subsequent surgeries because of a pleural-bronchial fistula and after one, I had a tube in for 4 weeks. That is not normal. Complications - I was released from the first surgery after 7 days. Neighbors with children visited me at my home and I picked up something from one of the children and was back in the hospital for 10 days fighting an infection. I suggest no children visits in the hospital and none at home till you are well recovered - say a month. Old Self. I actually was well on my way to full mobility about 10 days after surgery until I came down with the infection. Then I was out of commission for a month. Ten days in the hospital and 20 days at home. I have 38% lung capacity remaining. I've survived 12 years. I can't run marathons but am not on oxygen and can do most any activity. Stay the course. Tom Link to comment Share on other sites More sharing options...
Elaineec Posted March 15, 2016 Author Share Posted March 15, 2016 Tom, THANK YOU! I have read so much online but youve written the most detailed description I've found and answered all my questions. I'm so sorry you had to lose your whole right lung. That is still a possibility for me - surgeon says he won't know for sure until he gets in there - so I'm completely relieved to hear how well you're doing and you're not on oxygen! That's fantastic! I was afraid my life would change forever. I will heed your advice about kids. Last thing ya need after a lung removed is a lung infection! Glad you got thru yours ok. If I may ask one more question, I've read, and my surgeon mentioned, the possibility of permanent nerve damage on the side they open up ranging from mild numbness to mild aches to sporadic severe pain for which I'd be referred to a pain management specialist. Have you experienced any residual pain on your right side? Elaine Link to comment Share on other sites More sharing options...
Tom Galli Posted March 15, 2016 Share Posted March 15, 2016 Elaine, Yes I have extensive nerve damage on the right side of my chest but that is because they opened me up a total of three times to repair a pleural-bronchial fistula. That is unusual. After my first surgery and before my re-admission with a chest infection (due likely to the encounter with children) I actually had no pain in my incision area about 10 days after surgery. I know others who've had a "normal" pneumonectomy and are pain free. The morphine and opioid based medication they gave me had a very undesirable side effect - constipation. That was actually my biggest complaint after discharge so purchase a supply of laxatives. You'll need them. Stay the course. Tom Link to comment Share on other sites More sharing options...
Elaineec Posted March 15, 2016 Author Share Posted March 15, 2016 I read about the bp fistula, sounds like a nightmare. You went thru hell I think. I hope you're not in daily pain. Re: the constipation, 4 years ago I had a kidney removed so I'm familiar with the opioid based drain clogging. I've stocked up on laxatives. Lol One of the things I'm anxious about is whether this mass in my chest is a met from melanoma (5 years ago), kidney cancer (4 years ago), or a brand new primary. Could be any of those I'm told and we won't know for sure until it's excised and biopsied. Ah the joys of getting old. Thanks again. Even if no one else answers I'm much less fearful now. Elaine Link to comment Share on other sites More sharing options...
Bruce u Posted March 19, 2016 Share Posted March 19, 2016 Hi Elaine I had a lobectomy in 2007 with my upper left lobe removed. I had the surgery on Friday and was released from hospital Monday morning and took a 1 1/2 flight home Monday night. Now when I got home i was pretty wiped out but still I got a ride and dropped into my office the next morning for a few minutes. Then I did very little for the next week or so but was going around the house. So I did not find the surgery too bad. I do find that side a little every now and then but nothing serious. For me it was nothing like I had imagined it would be. I think everyone will recovery differently but they have also made alot of improvements for surgery recovery. Are you having VATS surgery? Link to comment Share on other sites More sharing options...
Debi47 Posted April 2, 2016 Share Posted April 2, 2016 Just had March 4 The first day is the worse but once they adjust your meds its ok.Coughing hurts the first 3 days but important that you cough at hospital and make sure you blow on the thing they will give you and keep doing I did I'm commercials was easier for me.They took out 2 days later chest tube was home next day.i have a hard time sleeping on my back. But that was all I could do 2 weeks later stopped pain meds the stitches don't hurt Homest what hurts more like a raw feeling under my breasts they said that won't go away and medicine won't do anything nerves take long to heal other than that putting a cold water bottle against it helped Wish you quick recovery anything else u need to know don't hesitate to ask Link to comment Share on other sites More sharing options...
Debi47 Posted April 2, 2016 Share Posted April 2, 2016 They did it VATS Link to comment Share on other sites More sharing options...
Debi47 Posted April 2, 2016 Share Posted April 2, 2016 I start chemo April 7 Link to comment Share on other sites More sharing options...
Candieox Posted February 25, 2019 Share Posted February 25, 2019 Hi i am 7 days post -op from my lung surgery it was not the Vats it was open my hospital had inserted a epidural for 5 days nerve blocker this worked wonders felt nothing but a bit sore after the 6 day it was removed and pain meds were given orally i did develope a blood clot in my thigh 3 day in which i was told id common i am now home and yes a bit pf pain but nothing avil couldnt handle i hope all goes well and good luck Link to comment Share on other sites More sharing options...
Tom Galli Posted February 26, 2019 Share Posted February 26, 2019 Candie, Welcome here. Seven days post op and on the computer..... You are doing very well indeed! I didn't know they did epidurals for thoracic surgery. That's new to me but it makes sense. Stay away from children if you can and recover without getting a chest cold. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted February 26, 2019 Share Posted February 26, 2019 HI Candie, Welcome, I'm glad to hear you're doing so well so quickly after open surgery! Let us know if you have any questions for us and how we can support you Bridget O Link to comment Share on other sites More sharing options...
Kenneth Posted May 2, 2019 Share Posted May 2, 2019 Hello my name is Ken.. first of all I will tell you that I had a fungus in my whole right Lung called aspergillosis back in May of 2016!!! To which I had Pneumectomy!!! So I live on about 38 to 40 % oxygen!!! I still cough a lot !! But I believe it is allergy’s in which I have been diagnosed !!! I am limited on a lot of physical activities !!! Otherwise I am ok Link to comment Share on other sites More sharing options...
GeorgiaF Posted June 28, 2021 Share Posted June 28, 2021 I am 12 days post op for a right upper lobectomy for a 10mm x 6 mm nodule that lit up on the PET scan. The surgeon did a wedge resection prior to the lobectomy and removed the lymph nodes in the mediastinum. The surgery went well and the chest tubes were removed 2 days and 4 days after surgery. Went home the 6th day (delayed one day because the doctor didn't know how to complete the discharge on the computer). I have diminishing pain and am walking (slowly) and doing light things around the house. Constipation has been a problem, as well as dehydration, lack of appetite and pain in my right breast. If I cough or sneeze my nipple feels like it is burning. I'm not sure when or if that will ever subside. I use the inspiration spirometer and the flutter valve several times daily. Eat a bland diet, drink lots of water, get plenty of rest, use the breathing apparatus the hospital gives you and don't start smoking again! Avoid children at all costs; you'll pick up a nasty bug that will set you back. The only problem I have encountered, yesterday, was a nasty case of gastritis that lasted for over nine hours. After enduring the burning pain and finally vomiting, my GI tract appears to be back to normal. The gastritis was probably caused by a combination of the surgery, anesthesia and oxycodone. Avoid spicy, high fat foods, pasta, white bread and citrus if you develop gastritis. I am able to sleep on my back propped up by three pillows. I'm a side sleeper but there's still too much discomfort for me to do that. I a grateful for the surgeon and the second chance at life I have received. I find out tomorrow the results of the pathology. I wish all of you well. Link to comment Share on other sites More sharing options...
Tom Galli Posted June 29, 2021 Share Posted June 29, 2021 Georgia, Welcome here and very glad to know your surgery apparently went well. I do hope the pathology reports disclose biomarkers for Targeted Therapy or Immunotherapy in the event you need additional treatment. Thank you for giving information about your surgery and recovery. This will benefit those who search here for answers. Stay the course. Tom Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.