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lobectomy tips or info

grannylove
Posts: 183
Joined: Apr 2011

Hi everyone,
I am finally getting my RUL lobectomy on 5/5 and am extremely nervous. I have been trying to prepare my home for my recovery (ie heating pad, xtra pillows etc). I was just wondering if anyone who has had or knows of someone who has had a lobectomy, has any tips or a heads up that would make recovery less painful or items I might need to get. Sometimes it is hard to get basic info about these matters from the medical community. Seems like they just want me to wing it when I get home. I am praying that all goes well with the surgery and I can be home quickly. Home is where my heart is and I always feel that I can overcome anything when I am home. Thanks for any info! Hugs and prayers to all of us who are fighting this dreaded monster. God Bless

Kimmiann
Posts: 46
Joined: Feb 2011

I had a RLL lobectomy in January by VATS. Having a recliner to sleep in was the best thing. It was very difficult fo me to get in and out of the bed. I could not lay flat or on either of my sides.

The recliner and incentive breather (hospital gives you) were the most important items I had for the first 2 weeks after geeting home.

grannylove
Posts: 183
Joined: Apr 2011

to know about the recliner. I thought it might be better to try and sleep there too. I had breast surgery (IDC) in February and that is where I slept for two weeks. It sure has been a trusted friend. How are you healing? Do you have any limitations? I hope you don't mind me asking, I was just curious to know how the rehab goes. I don't think I have ever experienced this much anxiety about anything before. My stomach is always aflutter! Thanks so much for your responses and pray that you are healing well, both physically and emotionally. Cheryl

Kimmiann
Posts: 46
Joined: Feb 2011

Cheryl,

I was scared too for the surgery. So much so as soon as the surgeon and anestesiologist came in to take me to the OR I burst into hysterical tears. Well, I can say that is the last thing I remember until I woke up.

If you have a pain pump you will push the button and your pain is controlled that way. I was in the hospital 4 days. Came home with Percocet and never took any. I only took Tylenol and Valium. I had pain but nothing severe.

I also want to say that I am 42 so my sugeon said my age made a difference in my recovery as well as the fact that my surgeon does very minimally advasive VATS. My longest incision is only about 2 1/2 to 3 inches. Anytime another dr looks at my incision they always comment that they have never seen VATS incisions that small.

Make sure from the time you wake up from surgery you use your incentive breather as much as possible. This helps with recovery. Walk as soon as you can and keep on walking.

As far as healing goes I still have pain in the surgery areas at times. This is normal and from what I understand there may always be discomfort in that area. I have also just completed my 3rd or 4 chemo treatments. I did not have any formal rehab other than what I was given in the hospital.

If you have nay pain at all while in the hospital let your nurse know immediately.

Kim

sissylu1
Posts: 66
Joined: Jan 2011

Do you know if you are having the VATS procedure? I ask because that can make a significant difference in how you recover..I had mine the old fashioned way so here are my thoughts; do the breathing exercises as soon as possilbe, stay ahead of the pain so don't be shy about asking for pain meds when you need it..I had a chest epidural for the first 5 days I was in the hospital and then switched over to oral meds that did not work effectivly for me for the first few days, do not let them discharge you from the hospital until you have effectivly managed your pain for 24 hours on oral medications..I too had trouble sleeping so ask for meds if you need it..sleeping in the hospital bed was easier because you could manually adjust the bed, when I got home I had a ton of pillows (I don't have a recliner) that I used to prop me up at night..my insurance paid for home help if needed-I had nurses come by my house once a week to check my surgery site and to assess me, had there been an issue (none with me) the nurses would have been able to remedy it faster than me calling my doctor, having to go in, etc...they called in any scripts I needed. Bottom line, don't try to be a martyr-take all the help you need and the medication that you need in order to feel comfortable and let the healing process begin..Good Luck and I will keep you in my prayers.

grannylove
Posts: 183
Joined: Apr 2011

it is. I did hear that the VATS cuts hospital time by almost 1/2, so I was pleased to hear that. Thank you for reminding me NOT to be a martyr....I always try to put on a strong front or don't want to bother anyone to help me. This is an area that I do need to work on. Significant Other reminds me of it also. Alot of the tests I have had in the last 2 months have definitely wore me down on keeping pain to myself. I guess that is why they make these meds anyway. I will let them keep me as comfortable as need be. Promise! The home nurse is something I had not thought of and sounds like it might be a good idea to check out, especially if my insurance will allow it. Just in case. Did you have any PT or Resp. therapy after discharge other than your incentive spirameter? I assume you had drains and chest tube, how long were they in? I am dreading the chest tube (but know that meds can take the edge off) Thanks for your helpful response and appreciate your prayers so much. Sometimes I think that is all that keeps me going. God bless all

PBJ Austin
Posts: 347
Joined: Mar 2009

I had the UR lobectomy in Sept 2009 and it was not VATS.

I want to start by saying forget your belief you should not bother people with your pain. It is the hospital staff's job to keep you out of pain and don't feel bad for throwing a tantrum if they neglect you. Be the impatient patient, as my Mom called me. Make sure you have your epidural until they remove the tubes and don't be shy about complaining if you are hurting.

I did not have PT but I did stay home from work for a total of 5 weeks. When you first get home you will feel tired just from taking a shower or walking across the house. But you should still stay as active as possible, without overdoing it of course. Do not lift anything over 10 pounds and be careful pulling things, such as opening a heavy door. Bending over might be painful. Laying down was impossible for me, I slept sitting up for at least 2 months. A recliner is a good idea or get one of those chair pillow things for your bed.

I know this sounds awful but healing will come. I am now very active and I can take the stairs to my 8th floor office.

All the best to you, you and all on this board are in my thoughts and prayers.

grannylove
Posts: 183
Joined: Apr 2011

for sharing your experience and your encouragement. It is good to hear that this is only a tunnel in my journey and I will get thru it. Reading your post has given me an epiphany about how I perceived my NSCLC. Maybe it was a combination of all the posts here. Not sure. I have been smokefree for 10+ years and somehow felt that I did this to myself and should not complain about the pain associated with it. (What was I thinking and was this a normal feeling?) Battling breast cancer 3 months ago never surfaced these feelings. Anyway, I will heed your advice and stay on top of the pain. Off of work for only 5 weeks? WOW that is amazing! I work in a steel mill and do lot of heavy lifting so I will cross that bridge when I come to it. Thank you for your prayers and response. I too pray for us all.

sissylu1
Posts: 66
Joined: Jan 2011

My chest tube was in for 5 days and I too was very worried about how painful it was going to be upon being removed..they will tell you to breath in and out, in and out, in and out and then they will remove it very very quickly-I was surprised as how much it did NOT hurt.
I did not have PT, OT or Resp therapy when I came home, it was offered but I was doing my breathing exercises with the spirameter and moving around my house as much as I could...but again, I really appreciated the home help nurses just for reassurance that I was healing properly and doing what I should be doing...they came once a week for the first month I was home and then I felt pretty confident not checking in with them.
I understand what you are saying about the diagnosis of lung cancer, when people hear that you have it the first question is sometimes "did you smoke?"....those of us who smoked did not deserve to get cancer no more than anyone who is even 5 lbs overweight deserves to get heart disease or diabetes.
I agree with other posts here, do not be shy when you are in the hospital about getting what you need when you need it and for me that included some special food cause I am a picky eater. The person who was off 5 weeks was in better shape than I was..I do think it depends on what you do for a living-I communte almost 40 miles to work and back-I am a community social worker so when I do finally get to work I am out and about most days..I was off 2 months and then went back to work part time for the first 2 weeks...take it easy and listen to your body...again, I will be praying for you especially hard on the 5th that all goes well for you.

lekkerone
Posts: 199
Joined: Jan 2011

I had a lobectomy in Dec....lower left lobe. I am blessed with wonderful friends who made my journey easier than it might have been. I actually didn't know I could have the surgery until the day before. I did get in lots of groceries and clean my apartment, change sheets etc.
I had the VATS for which I am eternally grateful. Had two chest tubes and they were taken out two days apart. I was nervous about that but neither hurt at all. Use the breathing device as often as you can as it is very important to get your lungs working as well as possible. When you are going to the bathroom, make sure you have everything you need so you don't have to make an extra trip. It seems like a long walk the first few days.

When I went home a friend stayed with me the first night and was there when I had my first bath......just to be sure. I was able to sleep in my bed right away but one thing I did learn is that when you are going to get up, do it slowly. Sit up and then take lots of nice slow breaths. At first it took me about three moves to get from bed to bathroom to kitchen. I was able to make my own breakfast and lunch right away and friends brought my dinner to me for the first few days. Don't sit too long but walk around your home. Your lungs need to work. Use that spirometer as often as you can.
I didn't have any kind of therapy but walked the halls of my apartment as soon as I could. In January I started using a treadmill which is very helpful.

If we have missed anything, please ask. No question is too small or unimportant. Diane

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I had my lower left lung removed in May via VATS and I would say it took a good 3 months to start feeling like I could begin to exercise with any amount of exertion. I also had a horrible cough that is VERY common with this type of surgery. My doctor told me the coughing was actually helping my lung to expand. The cough finally went away, thank heavens. My chest is still tight at times and my ribs are still tender if I press on them. I found that laying on the side of the surgery was actually more comfortable for me, not sure why, but it worked for me. I used a heating pad while resting on the sofa, but not in bed. Make sure you take your pain meds to keep any pain at bay. I am taking a yoga class now which had been very helpful in getting my joints loosened up a bit as well as being a great form of stress relief. After surgery I had 3 mos of chemo and 30 days of radiation. I started back to work full time in October while doing radiation. It all just takes time.

grannylove
Posts: 183
Joined: Apr 2011

I have heard that yoga is very beneficial and probably will be looking for a beginner class soon as I feel up to it also. Our poor bodies! I had bc surgery in Feb and have used my heating pad quite a bit so I figured it would come in handy for the lobectomy too. How long did you have to wait to start chemo? You seemed to go back to work pretty quickly even with all the discomfort you were having. That is inspiring! In fact, all the posts here have been inspiring! I have found great comfort in the feedback I have gotten. Even though I have great friends, they do not totally understand my anxiety about the surgery. They just keep telling me not to worry about it. Easier said than done! So I appreciate having this site, where there is always someone who has been where I am going. Thank you for taking the time to share your experience with me. Hugs and God bless each of us

grannylove
Posts: 183
Joined: Apr 2011

Friends are a great blessing! Old and new. Seems like you had to make a few xtra trips to the bedroom for items you forgot...I will definitely remember that! I too have a friend who will be staying with me for a few days and it is so comforting. I know I will have limitations at first but look forward to healing well and trying to get back to whatever my normal life will be like. I know that cancer has forever changed me, but I will not let it steal my life. I live in NE Ohio, so nice weather should be coming soon which will make it better for walking outside. Thanks so much for sharing your experience and appreciate your advice.

grannylove
Posts: 183
Joined: Apr 2011

Thank you so very much for your words of encouragement and prayers. I talked to my surgeon's office today about the visiting nurse and they are contacting them for me. Like you said, good for reassureance that I am healing properly and not having any issues. Thanks for sharing your experience, I appreciate it so much. I am so ready to get this cancer out of my body and with all the wonderful posts I have gotten, I think I am better prepared for recovery. Hugs to you Cheryl

grannylove
Posts: 183
Joined: Apr 2011

Thank you so very much for your words of encouragement and prayers. I talked to my surgeon's office today about the visiting nurse and they are contacting them for me. Like you said, good for reassureance that I am healing properly and not having any issues. Thanks for sharing your experience, I appreciate it so much. I am so ready to get this cancer out of my body and with all the wonderful posts I have gotten, I think I am better prepared for recovery. Hugs to you Cheryl

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I had my VATS in May, started chemo in June - August, then started RADS in September - October. I started back to work during my radiation. I had radiation in the late afternoon so I was able to head straight home from that, and crash. It makes you oh-so-tired. I began taking a Svaroopa yoga class in late November. Look up Svaroopa on Google to see if they have it in your area. I like it because it is a very gentle form of yoga which does not require lots of balancing type "poses". It is mostly stretching type poses which has helped tremendously with the sore joints I have experienced since chemo. This form of yoga is done with supportive props, such as blankets and blocks. Most of my aches and pains are gone now but my rib area still gets tender at times. You will do great!!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

One of the great things for me was a 'donut' shaped pillow (actually horseshoe-shaped) that I could stick around my arm on the side of the surgery, reducing discomfort while sleeping. This cushioned that side of my body from the bed itself, I guess. It worked, I know that. This was provided by my hospital and I am not sure that all of them do so.

I learned, by the way, in asking why I needed this, that we tend to WANT to sleep on the side where the tubes were for whatever reason. The 'donut' helped a lot.

Best wishes.

Take care,

Joe

grannylove
Posts: 183
Joined: Apr 2011

That sounds like that would be a convenient little thing to have. I can understand how that would work too. I am definitely going to inquire about one. Better to have it and not need it than to need it and not have it. Thanks for the info. Must be a normal body reaction to favor the affected side. Thanks again! Sure glad I found this site as it has been a source of knowledge and comfort.

grannylove
Posts: 183
Joined: Apr 2011

Hi everyone! I have been home for about a week now. All went well except the surgeon decided not to do a VATS. He wanted to remove 6 of the mediastinum lymph nodes to be sure that none were affected. So I do have a rather large incision I had not planned on but he knew I wanted to be agressive in treatment. Can't complain! Seems I have more pain where the chest tubes were (2 in my side) than the incision, but that could be due to cut nerves. Anyway, just being careful not to overdue. I am healing well. Thank you all for your support and prayers.....I had such a peace of mind when I went into OR. God bless each of you! HUGS

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

So glad you are home,and on the mend. Keep us posted on your progress.

sissylu1
Posts: 66
Joined: Jan 2011

I'm so glad to read your post-I can't tell you how many times I thought of you and prayed all would go ok..I too wanted the agressive procedure and hoping it will pay off in the long run. Take care of yourself and let others do for you!

lekkerone
Posts: 199
Joined: Jan 2011

that behind you. Take care and give yourself lots of time to heal.

Kimmiann
Posts: 46
Joined: Feb 2011

So glad you are home. Keep feeling better.

grannylove
Posts: 183
Joined: Apr 2011

Hi Kimmiann, Thanks for your thoughts. This is definitely a process but each and everyday seems to be alittle more better. Still pain, but not as intensive etc etc. I wish the weather here in NE Ohio would be better so that I could walk outside more. But I opt to walk inside and do easy stretches. Sometimes I do go to the grocery store with friends for a change of scenery! God bless us all Cheryl

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