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1317224 tn?1378705134

Having Surgery After All

Hi All,
I've been posting on here awhile. The last time, I was postponing a Bilateral Thoacoscopic Mini-Maze procedure because I felt like I couldn't do one more think medically. It had been scheduled for 11/13/12. Well, I've been cardioverted 4 times in the past 5 weeks and have decided that the procedure is looking better. Even if it doesn't totally cure my a-fib, it will, hopefully, slow things down and I will have less episodes.
In the beginning of a-fib, with each of my 3 ablations, I was hopeful I could go off medication. Now, I am willing to be on medication if we can lower the episodes and the symptomolgy. Learning to live with resistant paradoxymal a-fib has taught me alot. We don't always get what we want, but sometimes we change enough through the process to learn to live with what we have. No cures for me perhaps, but a less impaired quality of life. I hope.
Wishing you all the best through the holidays!
MaryLL
24 Responses
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1569985 tn?1328247482
I am so glad your afib is well controlled.  My rapid ventricular response makes me so exhausted that the thought of staying that way permanently is very scary.  If that becomes the case, I guess I would have to be on meds, as you are, to lower the rate, or get a pacemaker/AV node set up.  I think feeling like I'm in limbo is not helping me -- I need information and a plan -- then I can deal with whatever I have to.  If you're into dog books, you might want to check out "The Art of Racing in the Rain.  Wonderful story, but a little sad.  Happy New Year and happy heart health.
Helpful - 0
612551 tn?1450022175
COMMUNITY LEADER
I read more to learn than to answer - but yes some people are living with permanent AFib, me.

That said not all AFib is equal (equally bad).  In my case BB and CCB controls my ventricle rate, keeping the resting rate in the 80s, in morning maybe 70s and I don't feel the fibrillation not even the irregular (maybe every third beat) ventricle beat (PVC?, I think it is similar).   For all those reasons my cardiologist will not try electrocardioversions any longer (I have an enlarged left atrium) and says I'm doing well enough to "live with it".  I have always felt the Medicare rates don't encourage doctors to take on any battles they can "safely" treat with a few simple pills.  There are studies, I have looked them up myself, that shows my life expectancy would not be improved by getting me in NSR given my controlled AFib condition.  In either case I suffer from heart disease which is a "strike" against me.

I do sympathize with all who suffer from the effects of AFib and consider myself "lucky" given I can't have a fully healthy heart.  But, at 73 it would be very unusual for me to feel like 50.  I hope my mind continues to work, if only part time.  

On the subject of reading I am finding it harder to read because almost all reading other than educational give me a downer.  I am reading "A Dog's Purpose" right now, I picked it because reviews were very good, I liked "A Dog's Life" and the current work has a sequel which I took to be the end-of-life for the dog.  I find I have to read something scientific (that too can be depressing) or historical:  biographies for example.  These too can have sadness in them but they help one understand.  Sorry for changing the subject, but as a fellow AFib'er I confess I am finding it harder and harder to find enjoyable reading material.

Best health for 2013, and beyond.  
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1569985 tn?1328247482
You sound much better.  32 lbs. -- that's a lot to lose, but typical I think with the many issues you've had.  It's good if one needs to lose, but doesn't sound like a diet program I'd care to try:)  The fact that you can concentrate enough to enjoy reading is great.  I think when we are really sick, that's one of the first things to go.  Good luck on he 1/14 appt. -- hope you get a good report.  

I have gotten thru the last 8 days and stayed in NSR!!!  I have been having a few pac's, but overall am feeling much better.  I have had a horrific cold and now that that's better, I feel better in general.  It is hard to know how much of my feeling bad (weak, lightheaded, etc.) was heart and how much due to the cold.  Anyway, I see the EP on Monday 1/7 and I have a ton of questions for him.  I really want to know what his policy is on getting cardioverted because his staff has not really been super receptive on this.  I was told the first time just to "wait a few days and see if I converted on my own" (something I knew would not happen) and the 2nd time "you know, sometimes people just have to stay in permanent afib."  The first imaging doctor who did my TEE said I might need a pacemaker.  I would think those would be issues that would be decided between me and the doctor, not by his nursing staff.  He's good at covering all questions asked, and I have a list.  I am just grateful that I'll be seeing him Monday and am staying out of Afib so far.  I want to find out what's going on with the "severely dialated atria" and get a treatment plan.  I also may go for a 2nd opinion, depending on what he has to say.  Thanks for caring.  This is such a lonely disease and people don't realize how debilitating it is.  I had a friend say, "Maybe if you just didn't think about it."  Hard to imagine when you're heart's out of control and you can't get your breath!  Well, that's enough whining from me.  Sending healing thoughts your way and with luck maybe 2013 will be a better year for all of us afibbers.
Helpful - 0
1317224 tn?1378705134
Good to hear from you, I appreciate it. Yes, I thnk the Amioderone is definitely a last resort medication. My heart is doing good, no NSR and the incisions are healing.
I'm still sleeping most of the time but I do think the antibiotics are beginning to kick in on the pneumonia. My wheezing and chest crackling are less, I'm able to keep food down with the anti-nausea meds, and I could actually read a little yesterday. I continue to lose weight, now down 32#'s, which feels strange. It's like I took a long nap and part of myself fell off!! lol One has to laugh here.
I really appreciate your support. I am slowly on the mend, see the cardiologist on 1/14/13 and will know more then.
Hope you are doing well, keep me posted on how you're doing and what's up with you please.
Blessings!
Helpful - 0
1569985 tn?1328247482
So sorry you've been feeling bad, but glad you got to the bottom of it.  My 2nd opinion EP said Amioderone does cause lung damage after a time, I think you're well off of it.  My Mom was finally taken off when they decided it was doing her more harm than good.   I think it is easy to forget that even tho the "open" part of your heart surgery didn't happen, it is still a big surgery and sometimes knocks you flat before you bounce back up.  Keep on keepin' on -- you just have to get a little better every day.  Thanks for the report, I was wondering how you are and was going to message you today.  NSR!!! Yay!!!
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1317224 tn?1378705134
Just went through a really difficult few days. I got much worse, couldn't keep food or liquids down and became so exhausted I could only lay on the couch sleeping. Coughing was horrible.
I called and saw the doctor today. He did lung x-rays and because much of the liquid is now off my lungs, we can see that I have pneumonia. The doctor gave me anti-nausea meds as well as antibiotics. Another 10-14 days on bedrest. The cardiologist also agreed to take me off the amiodarone as in a small percentage, 2%, of people, it can cause lung issues.
My heart does seem to be doing good though. Incisions are healing well and in NSR. Such an adventure...
Happy New Year all!
Helpful - 0
1569985 tn?1328247482
Sounds like the walking around the house circuit is a good way to start getting your strength back.  Surgery takes so much out of you.  That 14 lbs. is amazing!  No wonder you couldn't breathe!  I am hoping you continue afib-free in the New Year.  Sending healing wishes your way:)
Helpful - 0
1317224 tn?1378705134
It's been an up and down 10 days. The incisions are healing nicely and no more leakage. On the other side, my lungs have been more filled with fluid and it has been harder to breathe and enjoy much mobility. I saw a doctor last week who put me on diuretics to help remove the fluid and I lost 14# in 4 days. He has just upped the dose as it wasn't working as well after the 3rd day.
I have begun doing a walking circuit around the house to build strength, taking the 2 diuretics per day, trying to eat soft foods, and using oxygen for night and naps. I had hoped to be back to work last Thursday but now it seems like next Monday 1/7/13 will be more realistic. Still no driving.
And best of all, still no a-fib!
I look forward to moving forward and feeling better. I would say the mini maze, while painful, has been recovery well but the post-surgery lung fluid has been a huge complication to my recovery.
Will continue to post.
Wishing you all a happy New year and let's hope we all have less a-fib in 2013!
Helpful - 0
1317224 tn?1378705134
Yes, the fluid draining seems to have helped my breathing. Had a little setback today when I ate a sliced apple. Then I did my lung exercises a little too soon after and aspirated a piece of apple. The coughing and choking for 10 minutes seems to have increased my chest and incision site pain. But this too will pass, and I've learned something that seems obvious!
Slept better last night and had a good nap today. Moving ahead.
Thanks again, for the support and Happy Holidays all!
Helpful - 0
1569985 tn?1328247482
Sounds a little scary, but also like the fluid draining off is a positive thing for your breathing.  So glad you are improving.  Hang in there, you are an inspiration for the rest of us.  Keeping you in my thoughts and prayers and wishing you a peaceful, healing holiday.
Helpful - 0
1317224 tn?1378705134
Woke up freezing today. Sat up to see that the area where I was sleeping was drenched. I thought night sweats until I saw my nightgown was also drenched with fluid and blood tinged. Scary. I called the thoracic surgeon's office and they moved my post-op Friday appointment until this afternoon.
I went in and had the usual: blood tests, INR, EKG, and heart x-rays as well as saw Dr. Hill.
He said that the fluid is continuing to drain from around my heart and lungs and it may do it again. He rebandaged me and gave my friend (a nurse) lots of extra new bandages to use if this happens again. He said everything looks good and is moving forward. Cautioned me I might have some afib episodes the next 2-3 months but after 3 months they will either stop completely or significantly decrease. The interesting thing is that since the drainage, my breathing has improved. I can now go 250 points higher on my spghymeter (sp?).
Also had my first shower and hair wash in a week. Feels good. Was exhausted after 3 hours at hospital so came home and slept 2 horus. It's now 2am and I'm wide awake posting on here.
Healing goes on.
Again, happy holidays to all!
Helpful - 0
612551 tn?1450022175
COMMUNITY LEADER
Please trust and believe you will get better, as you said you have excellent medical attention.  In this spirit I wish you a Merry Christmas, God Bless.
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1569985 tn?1328247482
I think you are wise to take it one step at a time.  Tomorrow or next week can take care of itself.  It is amazing, isn't it, when the simplest thing like being able to walk across a room and perhaps eat a meal seems like a minor miracle?  I will be hoping and praying also for your well-being and recovery.  
Helpful - 0
1317224 tn?1378705134
I've been in normal sinus rhythm since the procedure. But that's the way mine tends to go. With the past 3 ablations, I was in normal rhythm until we got to about 7 weeks, then I began having episodes again. After the cardioversions, I could go from a week to a month.
Thanks for the bravery comment. I was scared, still am. I feel very fortunate to live in an area (Seattle) that has many specialists in a-fib procedures. Also, in spite of procedures, mine has progressively gotten worse, so I felt that I was fast becoming a prisoner of afib if I didn't do something more drastic.
We'll see how it turns out. I'm hoping and praying. And right now, I am learning to do "helpless" well and to just concentrate on getting my breathing back to normal and healing my incisions. That seems like enough.
Wishing you all a Happy Holiday season and a great New Year. Without you, I would feel so much more alone.
Love!
Helpful - 0
1807132 tn?1318743597
I am glad to hear you are home and resting up and the pain is starting to subside.  I wish you a speedy recovery and much success on your healing.  Take it very slow and rest up.  (((HUGS)))
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1569985 tn?1328247482
By the way, I think you did the right thing and that you are very brave.  Let us know how you're doing.
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1569985 tn?1328247482
So are you in normal rhythm now, or having episodes?  I just went thru an afib episode, cardioversion and TEE, about 10 days of feeling bad, just starting to get back to normal.  I will be very interested to see how you like the results, as I may have an ablation in my future.  I can see why you would not want to have a cardioversion each week.  Sending healing thoughts and prayers your way . . . feel better soon!
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1317224 tn?1378705134
I had it on 12/12/12. It seemed like an auspicious date! It was the bilateral thoracoscopic mini-maze. I had an afib episode on the table which he said complicated things but which also let him know an area that needed work. It took about 3 hours. I was zonked on vicodin for 3 days but quit it then and went on Tylenol. The doc had predicted 2-3 days in the hospital but I ended up being there 5 (almost 6). Whenever you have work done near your lungs, you have pain in healing. When you hurt, you breathe less deeply. So I stayed while they worked on getting my lungs back into shape. I am now home with a walker and an oxygen tank for about 2 weeks or so until things normalize. The left side is nearly pain free but they had to make a larger incision on the right side for the tube, and it still hurts if I move wrong.
I continue to ask myself if I did the right thing but I've decided that I can't live the way I was (episodes and cardioversions weekly). I do believe it will get better, would love to have it gone...we will see!
Thanks for your support.
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Avatar universal
Wish you the best ...please keep us update .
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1317224 tn?1378705134
Thank you for your support. Right now, we have it tentatively set for 12/24/12 as that is the only date available. They are working at finding something sooner as I am ending up in Urgent Care almost every week.
Will let you know more. Hope you are all taking are and hanging in there as we walk this walk.
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1807132 tn?1318743597
I do wish things had worked out better for you but pray this route helps you get your life back some.  Please do let us know when it is and we will send extra prayers you way.  Best of luck and stay strong.
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1569985 tn?1328247482
When are you scheduled for the procedure?    Will be keeping you in my thoughts and prayers.  Wishing you a smooth procedure and a speedy recovery.
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2093880 tn?1334813768
Good luck to you!  I hope for the best possible results for you   :)

I'm learning the same lessons as you, it's tough, but I think it will make us better and stronger people in the end.  
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612551 tn?1450022175
COMMUNITY LEADER
Wish you the best possible result -

Merry Christmas an an Afib free new year.
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