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My LINX Journal - Part 2

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Posted 3/15/2013 6:06 PM (GMT 0)
My LINX Journal - Part 1: www.healingwell.com/community/default.aspx?f=45&m=2616398

Part 1 was getting too long so they locked it. I want to continue my updates and taking any questions, so I started part 2 :)

2 MONTH UPDATE:
Today is exactly 2 months since I had the LINX implanted. Time flies so fast!

I'm still extremely happy with LINX. I can honestly say it has changed my life. I've had GERD and heartburn since 2005, but in July 2012 is when it 100% took over my life. Every single day was heartburn and I ended up only eating grilled chicken/fish with steamed veggies, no seasoning except salt and had water nonstop all day. I was in awful pain all the time, even while taking 4 PrevAcid per day.

Going from that to how I am now honestly blows my mind. I feel fantastic! I have been able to eat anything I want and no heartburn issues at all. I love spicy foods and trying new ethnic foods. I don't have to worry anymore and ask the waiter 100 questions, or stress about what to make at home. My biggest issue now is that I need to stop pigging out and eat healthy again!

Anyone with any questions just let me know :)

The only down side so far is the 'swallowing/stuck' issue but that has gotten much better. I highly recommend LINX if you are a candidate. Oh yeah, insurance covering it can be an issue to but I have faith that they will eventually cover the $2,500 for LINX and honestly, if they don't - LINX has been worth it!
Posted 3/16/2013 6:59 AM (GMT 0)
So happy to hear that you're still doing well! Thanks so much for continuing to update your story. Hopefully UHC will pay that portion, but it does seem like a small price to pay for how much better you are! I'm going to get a consultation with a surgeon on March 28th, so hopefully I will get there soon:)
Posted 3/16/2013 1:01 PM (GMT 0)
Good luck on the consult, I wish you the best :)

I'm really hoping they do cover it, because I don't have $2,500 but if I have to pay it I'm so happy with LINX that it would be okay. Honestly, the price of cancer is much more than $2,500 and that is where GERD can lead to if not fixed properly!

Keep me updated on your consult please!
Posted 3/21/2013 12:43 AM (GMT 0)
Hi NDL,

Thanks so much for all your posts. Cool pictures, too! I'm very happy that things are working so well for you. I'm a week out of surgery, and it means a lot to be able to see how you are doing 2 months out. So far, so good for me, and reading your posts has cheered me up considerably, especially since I know that Dr. Taig has been advising my surgeon (Dr. Soper--I'm his second patient). I'll keep following your progress, so please keep us updated!
Posted 3/21/2013 12:47 PM (GMT 0)

sinfrontera said...
Hi NDL,

Thanks so much for all your posts. Cool pictures, too! I'm very happy that things are working so well for you. I'm a week out of surgery, and it means a lot to be able to see how you are doing 2 months out. So far, so good for me, and reading your posts has cheered me up considerably, especially since I know that Dr. Taig has been advising my surgeon (Dr. Soper--I'm his second patient). I'll keep following your progress, so please keep us updated!

You're very welcome! I'm excited that you are going to be having LINX! It's honestly changed my life and I feel so much better. You'll have to start your own journal on here for everyone!

Any questions just let me know :)
Posted 3/21/2013 12:55 PM (GMT 0)
update:

Figured it's time for an update. The husband and I decided to join a gym, he is getting high cholesterol and since I have bone density issues from the freaking PPI's, I know I need to work out to help that situation. We had a trial pass and were just doing laps in the pool. After being in there for about an hour I remembered how I'm not fully healed from LINX for 3 months... it's not been 3 months. I figured whatever, I feel fine - just VERY out of shape.

The next morning I woke up because I could feel the LINX, just like on day 2 after surgery you can "feel" it. So every position I got in it wouldn't go away. I started worrying, which made it worse. I took 1/2 vicodin, that I had left over from the surgery, and went back to sleep. I called KNOX hospital and left a message basically asking when I'm allowed to work out and on a side note I already did and think I hurt myself and hope I'm not dying... it was a half joking / half scared message LOL The nurse called back and said she talked to Dr. Taig and he said if I feel fine I can work out but don't over do it, which I apparently did in this case. He said the feeling of "feeling" the LINX is normal since I over did it and not to worry. Next day I woke up 100% fine. I've since swam 2 more times, but for 30 minutes each instead ;)

So while everything is okay, there is my "hiccup" and "incident" LOL I think I'll wait to start doing Zumba or extreme water work outs until the 3 month mark, just to be safe!
Posted 3/21/2013 2:38 PM (GMT 0)
Hi NDL,

We all make mistakes, LOL.

With hindsight being 20/20, I would have called Dr. "T" and asked him what are the do's and dont's going forward for the first 6 months - especially with exercise, lifting, stretching, etc. Let him give you medical clearance before you do these things, IMO. Since you feel OK now, please heed his advice.

How about an exercise bike or a treadmill? At least you would be sitting/standing and burning calories :)

When you say that you can "feel the Linx," is it an internal feeling or from the outside?

Best,

GM :-)
Posted 3/21/2013 2:41 PM (GMT 0)
It was internal feeling.. it's hard to explain. It kinda hurt though. I don't feel anything weird anymore and it went away after about 12 hours. I was just freaked out! I was so glad they called back right away and were super nice and helpful.

My husband never works out so he kept thinking swimming would be best for us to start out. I wanted to do Zumba right away, glad I didn't! I think treadmill may be best for a bit!

I didn't' realize how badly out of shape I was. Granted, sitting on the couch for 2 weeks after surgery probably didn't help!
Posted 3/21/2013 3:22 PM (GMT 0)
Hi LDL, thanks for your reply.

Actually, I already had the surgery. I'm now on day 9. I set up a post-op journal, so feel free to have a look. Any perspectives you can provide would be most welcome. I'm following your progress very closely: https://www.healingwell.com/community/default.aspx?f=45&m=2676512

It's funny, on exercise the doctors seem to tell us to "do what feels right" rather than any clear guidelines or timetables. I even asked my surgeon when I could ski again. I was scheduled to go to Colorado to visit my girlfriend yesterday (on day 8), and he said "whenever you want" (!), implying that it might have been possible on day 8. It certainly was not. He's not the only one that's given this type of advice. I suppose they are not entirely sure, and, given the type of procedure, there must be great variation between people depending on age, prior fitness, etc. So they are watching us to get a sense of things. The most useful thing my surgeon said on this, though, was to use walking as a gauge of how much exercise to do. Start modestly, and then ramp up the intensity and length. The more vigorously you can walk, the better able you are to do more intense exercise. It makes sense. A safe way to gradually get into things from the beginning.

On day nine I'm sitting here with the newspaper having a strong cup of tea and not even thinking of reflux. How wonderful. Let's see whether the porridge goes down smoothly this morning.
Posted 3/21/2013 3:23 PM (GMT 0)
Sorry, I meant NDL!
Posted 3/21/2013 3:27 PM (GMT 0)
Oooh!! I apparently can't read or something haha! I'll check out your journal :)

Isn't it amazing to not have to worry? Surgery itself isn't fun but this has been worth it 100%. I'm extremely happy with LINX.

I'd say no skiing haha! But even before the surgery I wasn't active. I sit at a computer all day for work then a sewing machine or computer at home. So yeah... I was super out of shape before the surgery. But since I feel SO MUCH better now I just want to work out and get out into the world, eat delicious food and start my life over!
Posted 3/21/2013 5:25 PM (GMT 0)
It is indeed wonderful not to worry, and your progress gives me real optimism about where I might be in two months. Just imagine a life where being active (rather than resting and recovering from GERD symptoms) became the new default. It may be possible after all.

Do try the walking. It's a great and gradual way to get yourself physically active again.
Posted 3/21/2013 7:02 PM (GMT 0)
When I was recovering I thought it would never end! Those 2 weeks took forever LOL, so I hear ya!

I wish it was warmer to go outside and walk, that'd be fantastic. I could walk at the gym though... I just find swimming so much more fun!
Posted 4/2/2013 8:21 PM (GMT 0)
How are you doing, NDL?
Posted 4/3/2013 1:01 PM (GMT 0)
Still doing great! Still eating everything spicy I can find and no heartburn. I finally accidentally ate pineapple (that was my food aversion and the first thing that gave me "heart attack" heartburn) and no heartburn at all! YAY!!

I have noticed if I exercise too much it feels a little tight where LINX is, but then again I'm not cleared for exercise for another 2 weeks lol go figure. It's not pain just I can notice sometimes and it's with A LOT of exercise.

Overall still happy!!

Still fighting UHC about the $2,500 for the LINX and them not paying yet
Posted 4/3/2013 3:29 PM (GMT 0)
Great to hear from you again, NDL. Your good recovery is an inspiration. By my count you should be hitting the three month mark pretty soon. Correct?

Has the painful dysphagia period passed (if you had it at all)?

I'll be eager to hear what happens with UHC. I still have not learned what Blue Cross intends to do on the Linx device.
Posted 4/3/2013 3:41 PM (GMT 0)
Yep - April 15 is my 3 month mark! Crazy how time flies!

The dysphagia has gotten much better, I get it maybe 2-3% of the time and it's not crazy painful anymore. It only happens sometimes when I take horse pill vitamins or eat sweet potato fries too fast and don't chew enough.

I hope Blue Cross pays everything for you! I'm keeping my fingers crossed for UHC... but if I have to pay the $2,500 for the LINX device itself - it's worth it!
Posted 4/3/2013 4:09 PM (GMT 0)
NDL,

Good to hear that you are doing so great. Still battling UHC too. Any news on that yet?
Posted 4/3/2013 5:39 PM (GMT 0)
They appealed it and then UHC denied... now they are appealing it again apparently. I think I'm going to write UHC and ask how a surgery that has changed my life and I no longer need to go to many doctors and have medicine is a BAD thing?!
Posted 4/3/2013 6:35 PM (GMT 0)
Hi NDL,

IMO, let the hospital handle it. I do understand your frustration and it is nothing unusual. By contacting UHC, you are placing the burden in your own hands while there are people at the hospital that might be able to code it a different way, so they can be reimbursed.

Best,

GM :-)
Posted 4/3/2013 6:38 PM (GMT 0)
Yeah, I didn't think of that part! I don't want to have to deal with this myself :( The hospital is trying ... then again they want their money LOL
Posted 4/4/2013 3:09 PM (GMT 0)
When the Linx procedure is performed is it done under general anthesia? So this means they have a machine breathing for you?
Thorugh my research for the linx procedure I have discovered that "the protocol for Linx is that Linx should be positioned around the enterior vagus and below the posterior." Am I correct in understanding that they have to disect the posterior vagus nerve off the esophagus to place the Linx device onto the Esophagus? Is this safe? How strong is that nerve? Im concerned if they touch that nerve with those robotic arms they may cut the nerve by accident.
Was this discussed with your surgeons? Did he/she mention how they would implant the device? Has anyone experienced any problems in regards to the vagus nerve.
Posted 4/4/2013 3:14 PM (GMT 0)
LINX isn't a small surgery, it is laparoscopic so it's less invasive but yes you have a machine breathing for you and the anesthesiologist is right there the entire time.

I did ask about the vagus nerve and asking if there were issues that could happen. I honestly can't remember exactly what he had said but I remember having no worries after he explained everything.

I do not know of anyone who has had this surgery having any problems or complications with the vagus nerve.
Posted 4/4/2013 3:50 PM (GMT 0)
Thanks NoDoubt. By the way how are you feeling.
Posted 4/4/2013 3:56 PM (GMT 0)
You're welcome :)

I'm feeling great! Honestly I can't believe it most days. I feel incredibly thankful and often sit there in disbelief. I was in so much pain for so long that I can't believe it's done and I feel "normal".

I could be LINX's spokes person lol that's how much I rave about how amazing it is!
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