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Guest Hollylib59

VATS surgery on Jan 8-fear of complications! Afib?

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Guest Hollylib59

I have surgery to remove the lower right lobe next week. I have a history of a regular heartbeats and I have heard that atrial fibrillation can be a complication after this surgery. Anyone have any experience with this? I’m pretty scared guys. Encouraging words welcome. I have a son with autism and I need to be here for a long time to take care of him!

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Hi, Holly, and welcome.  I don't know about atrial fibrillation as a complication specific to this surgery--I imagine there's some risk any time one undergoes general anesthesia.  I assume your surgeon and anesthesiologist are aware of your heart issues (I assume you meant to say you have a history of irregular heartbeats).  If I were you, I'd remind them just before surgery.

The good thing is that with VATS, you shouldn't be "under" that long, and your recovery should be fast.  

We have at least one other member here on the forum with a son on the autism spectrum--he was an older child and he handled mom's surgery like a trouper.  I know every person with autism is different, but you shouldn't be out of commission for long.

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Guest Hollylib59

That’s great to hear. My son is 22! I guess I’m just nervous, which is normal. It’s hard for people to understand why I’m feeling scared! My tumors are very small, typical carcenoids that have not spread, so I’m very fortunate. I certainly appreciate hearing from others who have made it through this!!

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Hello, Holly.  I think I can address this.  My mom has an irregular heartbeat and in order for her to have her lobectomy she had to do a heart stress test before surgery.  Her surgery went very well, but they did keep her in hospital for 5 days just to monitor her heart.  She took her heart meds as usual.  It worked out fine for her.   In addition I am in the autism spectrum myself.   You will get through this with flying colors.          Joy

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Hello Hollylib59!

My apologies for not being able to respond earlier... LexieCat sent me a message - I'm so glad she contacted me and let me know about your posts / concerns. Not sure when your actual surgery is scheduled, so I really hope you'll be able to read this beforehand and that it might offer some help...

I just had a lobectomy (right upper lobe) via VATS on October 1, 2018.  I, too, have a son on the Autism Spectrum. He is 20 years old, so when I read your statement "I have a son with autism and I need to be here for a long time to take care of him!", I could completely understand your feelings!  I could have written that same statement (and probably did at one time here on this site!).  My particular situation is that I have been a single mom since my son was 3 y.o.  He was diagnosed with Asperger's Syndrome at age 7.  We have really only had each other all of these years - he's been a blessing to me and has taught me so much about life and myself.  He is considered "high functioning", but is not able to live independently at this time - or at least not without some difficulty.  I'm not very good at writing short posts here, unfortunately, but I'll try to give you a somewhat detailed version of what our experience has been re: this journey with lung cancer...

I was an off/on smoker for over 30 years (I used it as my crutch for stress). In Dec 2016 my primary care provider encouraged me to get a low dose Lung CT due to my smoking history. I was not having any symptoms or problems. I was nervous about what the CT would find and knew I was at risk due to my smoking history, but tried to tell myself it would be fine. The results showed several small tumors in all areas of my lungs. I was devastated. My first thoughts were that I was going to die in the very near future and I went into panic mode as to what I was going to do about my son - how would he survive without me? What would happen to him?  I had been telling myself for some time that I needed to get on the ball and get things set up for him in the future "just in case" something happened to me; but I kept procrastinating.  The lung CT results definitely forced me to take more definitive steps in planning for my son's future.

I obtained a couple of different opinions following the Dec 2016 CT results.  I was told the nodules were very small and probably not cancerous. It was recommended I do a "wait and watch" approach, with regular CT scans.  I had a 6 month scan in June 2017 that did not show any changes (some of the nodules actually went away). There was one nodule that was particular suspicious but too small to biopsy. It was not growing but appeared to be getting more dense.  It was advised that I get another scan in 12 months (I was not really comfortable with waiting 12 months but went along with that recommendation).  In early 2018 I inadvertently learned that I had thyroid nodules.  Again, I was feeling extremely stressed and panicked that they, too, were cancer.  I felt like my whole world was caving in - that I was losing my health.  I had the nodules biopsied in March and got an inconclusive report (not enough cells were obtained).  In the meantime, my PCP advised I get an earlier-than-planned repeat lung CT in April.  The CT did not show any change in size for the nodules being watched, but the suspicious nodule was once again showing some faint signs of becoming more dense.  I was advised to get another lung CT scan in 3 months. I then opted to travel to a larger city for a second biopsy for the thyroid nodules (I was greatly concerned there was a connection between the thyroid and lung nodules) but could not get in until June 2018.  So, in June 2018 I had a second biopsy for the thyroid nodules and they were found to be benign (thank goodness). In July 2018 I went for the repeat lung CT and it was at that appointment I was told they were sure the nodule was cancer - but not 100% sure. I was told I would need a lobectomy. That is when I really felt everything crash in around me. I knew this day was coming, but when the reality hit, I found I was not prepared emotionally.  Neither was my son.  It was a very difficult time for both of us. I was not sure where I would have my surgery done - I had a few options and I was told I did not have to undergo surgery immediately, so I took my time in making this decision and obtained 4 other opinions with doctors. 

I finally chose a Dr. in Seattle and scheduled surgery for October 1st.  I had a list a mile-long I felt I needed to complete. I felt and acted like I had to have every single detail I possibly could address taken care of in advance of the surgery (i.e. food cooked, bills all paid in full, transportation for my son, housing issues, Power or Attorney, Wills, Advanced Directives, etc.). This activity and worry helped me in some ways by keeping my mind off the actual upcoming procedure, but I also think it wore me out completely... There was no way I was going to be able to have "everything" in order. I felt like every action I took - every plan I tried to put in place - was all out of fear of how it might impact my son...

I don't know how much support your son needs - if he's verbal, working, in school, etc.  I know it varies so much from individual to individual.  My son, fortunately, is verbal and does well academically.  His biggest challenges / "issues" deal with communication / social situations. He had just finished his first year of community college last summer.  When we learned I now needed the lobectomy surgery, we had to sit down and really have a direct conversation about the future.  As I had from July until October to work on this with him, it helped.  We have no other support system, so that was the difficult part.  My son does not drive but he has received training on how to utilize the bus system.  He does not care to grocery shop (lots of anxiety with crowds) so we got set up with a grocery delivery service that we tried out before I had surgery. We worked on household bills together (i.e. rent, utilities), although I had everything set up with auto-pay except for rent prior to surgery.  He got the basics and had some previous banking experience, so that helped.  We worked on cooking more together before surgery, so he could prepare meals for both of us as needed.  We practiced doing laundry again. In many ways, this whole experience has/was a blessing as it forced him to try and be responsible for things he had not always been receptive to or willing to try before. Taking time off from school was a good thing as well. I originally felt terrible that he was going to take Fall quarter off from college, but it was the best decision. He did not have the stress of college and caring for me at the same time.  My son did not go on any appointments with me until the last / 4th consultation I had with a surgeon in Seattle.  That was the best thing we ever did... I think it really made this all seem real to my son.  We were able to tour the hospital together and we found a hotel (we got a medical rate) with a small kitchenette where he could stay. It was only three blocks from the hospital, so he would be close and could walk to be with me during my time in the hospital (versus being left alone in our apartment 2 hours away).  We checked into the hotel two days before my surgery so we could practice the walking route to the hospital, walk to the closest grocery store to get him items for the hotel room, etc. I had pre-paid the room and made sure he had a debit card and cash on him if needed.

The day of surgery my son went with me early that morning and stayed with me until the anesthesiologist arrived.  We said our goodbyes and kissed - it was probably the hardest thing I'd ever had to do by that point.  He was amazingly very brave, not emotional at all.  I barely remember seeing him later in my hospital room. I was in and out. I do remember feeling worried about him but having to let it go... there was nothing I could do. I had to reassure myself that he would be alright - and he was.  I barely remember seeing him the day after surgery... I was so dopey he decided there wasn't much point in staying there with me.  I learned later that he went to a small restaurant that we'd found  by himself - this was a first!  He would come to the hospital a couple of times a day and then go back to the hotel and get on his computer.  I was discharged on the 4th day and I think my son was a little disappointed that his time in a larger city - on his own in an apartment-like hotel - had come to an end.  We had some friends pick us up in Seattle to drive us back home, which helped, but once we got home, we were on our own.  Things got very difficult that first night at home - I hardly remember it.  I really was over-medicated (in my opinion). I can't even remember what started the situation, but my son became extremely upset and agitated - he was overwhelmed - it had something to do with my medications (there seemed to be so many, conflicting info on times to take/dosage, etc.).  My son ended up doing something he'd never done to me before - he hit me right in the back, just missing where my incision was.  It was a horrible experience for both of us. I was livid with him - and I have rarely lost my temper with him.  He has hit himself in the past (something we'd rarely seen the past few years), but never me.  We worked things out and I realized that an awful lot had been expected of him over the past few weeks.  I could cry now, as I know he feels terrible for losing his temper with me, and I feel terrible about not fully realizing or appreciating all that he had done to try and help me.  We've talked about that "incident" a few times since and how much we have both learned from this experience.

In hindsight, I really should have hired someone to check in on me the first week or two following surgery, but the Dr. and his staff kept telling me I'd be fine and that insurance would not pay for in home help. I had specifically asked them (and the hospital social worker) to make sure my son understood my medication needs, what needed to be done, etc. prior to discharge (due to his Autism) and they did not... My discharge from the hospital was a very poor experience (no nurse to help me shower, no wheelchair, no one to speak with my son... it was very disappointing). I was having terrible night sweats at home (which I later learned was due to low O2 levels due to pain med's) and a hard time breathing. I had to go back to Seattle one week after my discharge to have fluid drained from my lung (my son went with me on this trip with less than 30 minutes notice before a cab took us to Seattle... he was a real champ! I've never seen him alter his routine so quickly!). Five days after the fluid issue, I had to call my friends to take me to the ER due to an allergic reaction to the pain med Gabapentin. I had shown my son how my lip and eyes were swelling (I was still feeling really out of it on the med's) and he said "we should call the Dr. tomorrow"... Granted, it was almost midnight, but it was obvious my son did not really have the experience or knowledge of what signs to look for as my "caregiver". Thankfully, everything turned out fine but again, in hindsight, I think it would have been better to have had someone here with experience vs burdening my son (or putting me at risk) with the responsibility.

I know we feel we need to be here for our children with "special needs", but one thing I am learning from this whole experience is that my son is much more capable in many ways than I realized. It's been a good opportunity for me / us to evaluate where his strengths are and what he can do without my help.  This cancer experience (yes, my tumor was diagnosed as malignant, T1a, no lymph nodes or metastasis... so no chemo or radiation. Thankfully found early!) has brought my son and I even closer than I thought we were before.  We are cherishing this time together.  The biggest support he has been for me has been just being here for companionship and as my walking "buddy"... We started walking the next day I got back from the hospital and usually walk 2 - 3 miles each and every day since (unless the weather stops us!).  The walks offer us time to exercise and talk without other interruptions... I hope you and your son can do the same. My son made the comment the other day that he thinks he is "capable of doing more than I realize" and how he's seen this even more since dealing with my health issue.  So, there are blessings in all of this... But I am not ready to say goodbye to him. There is so much more I want to do for him and experience with my son.  I want that for you, as well.

One last thing... re:  Atrial fibrillation... My surgeon actually discussed this possible side effect with me prior to surgery. I had also read that this can be a common side effect following lobectomy surgery.  I was told it would more than likely crop up sometime during the hospital stay or within 30 days of surgery. The surgeon said if it did, he would prescribe medication for Afib and that it would not be a long term issue.  I did not experience this, so not sure if this is correct.

Again, not sure what your situation is, but hopefully you will have more support than just your son during this.  I think I took a little longer to heal (about 6 - 8 weeks) due to having to stop all pain med's so soon after surgery - but those weeks passed by quickly.  I felt better with each week. Just be patient with yourself.  You WILL still be able to be there for your son, but you'll need to be aware of and address your own healing first.  I am back to driving and a pretty normal schedule (and I wish that he was still doing more of the cooking...ha!). My energy is not what it used to be but I'm hoping that will continue to improve.  I have my first follow up lung CT in about 6 weeks... so I am naturally already nervous about it but will deal with whatever comes.  I feel better about my son's abilities after this experience. I hope you will find the same experience with your son. Hope I wasn't too long winded here!

Please keep us posted.  Let us know how you are.  I have found some very helpful, kind, intelligent and inspiring individuals on this site.  I don't have that kind of support in my personal life, so lungevity has been a wonderful place for me to turn.

 

 

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Hi, Hollylib59,

Welcome to LCSC. We're glad to see that you've already made some connections in this community. This is a great place to find information and support. Please post an update when you can and let us know how you're doing! I'm happy to provide additional information about LUNGevity's support programs and resources as well. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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