My LINX journal

Pat Fill said...
NoDoubtLove

http://www.nejm.org/doi/full/10.1056/NEJMoa1205544

The Most recent issue of New England Journal of Medicine is out with article on Linx and It lists the doctors who participated. I believe your doctor is listed.

Yes he is! I feel so lucky that I was able to go to him. I really think him having the experience he did has helped aid my sucess!

I really hope that NDL is covered by UHC. Hearing these stories about others being approved and then UHC taking it back is just crazy. I don't even understand how they can do that. I must say that I am now pretty worried since I want the Linx and also have UHC. If they approve it, i will make sure I get something in writing so that way if they try to take it back, I'll have proof. I just hope they approve me in the first place.

NDL - I asked my doctor to order a bone density scan and she did but warned me that my insurance may not cover it for my age group. I'll have to check to see if it's covered. I have a good reason since those PPIs are known to cause osteoporosis. I'm kinda scared because I've been taking them for almost 14 years! Not good :( Supplementing with vitamins is a good idea!

food update:

Last night I had a draft beer and spicy garlic buffalo wings from bw3 .. oh and fried pickles - yum! No heartburn ... just a tummy ache from grease and fat LOL The beer made me burp a lot!

I didn't have any, or at least I didn't notice anything. If there is acid in/around a burp then logically that would come up... I would like to know if burping would - obviously vomiting has to bring up acid/bile.

NDL,

Glad the linx is working so great for you. You are very lucky. I wish my outcome was as successful as yours is. I still have hope though.

I saw your post about bone loss. Yes, I think it is from being on ppi and acid suppression meds. Throughout the past few years being on ppi's, i have had plenty of blood work. For one, I was very low on vitamin D, and low on iron. My sodium and potassium levels were also affected by the drug. My doc put me on 10,000 dose of vitamin d daily, and i had to start taking potassium supplements. I was put on calcium and magnesium supplements too. I am also worried about bone loss. I am due to get my blood redrawn again beginning of March to see if the levels have changed.

If I were you, I would go to my doc and have him test your vitamin D and iron levels just to be safe.

UHC still has not paid my linx yet. We are on third appeal now and almost one year since surgery. May will be one year for me. This is very frustrating but I will continue to pay 100.00 a month until I know the outcome of the appeals.

Hope UHC does not back out on you too.

I read one of your earlier posts, see below.

"One thing that I guess was happening but is happening more noticeably now is that air bubbles come up my throat. It's hard to explain. I know this happened before the surgery too, maybe it's normal? It's not any kind of burning reflux, I still haven't had any heartburn so I'm not sure what this is? It doesn't hurt or anything. Just notice it's like a burp comes up without me trying or without notice."


I have the small air bubbles come up too. I had this before linx too. I also burp without trying and it just comes out without me even knowing it will. Like you, I have no notice, and it just happens. I always knew when I was gonna burp pre linx. Glad I am not alone.

Keep in touch. Great big hugs to you.

Hi NDL,

I'm happy to read that swallowing pills does not bother you any longer! That's great!

On having a family. Keep in mind that you are only 30, so there is quite a bit of time to get your body back in order and have an uneventful pregnancy, IMO. Slow and steady wins the race, I think.

How is your overall quality of life now with the Linx - I mean how close to perfect?

Be well.

Gastricman - (email address now posted in profile. I would like to communicate with you.)

NDL,

Great updates. Glad to see your progress.

I've swallowed giant Calcium pills without issues. Food seems to get stuck mostly the first few bites and it becomes easier after that. I can now drink water faster than before, even cold water.

As for burping, I sometimes have really nasty big ones without notice, especially after eating. Post-prandial hiccups seem to happen less though.

However, I can feel some reflux (or some flavor of it) in the first hour after eating, which is of course serious improvement from before. I don't know if it will be better in time.

GH

I know what you mean about waiting to start a family. I've too waited for quite some time. The next thing is getting a house and then after that we're going to start trying. I've put it off mainly because of selfishness and my health issues. Whether my body is where I want it to be or not, I need to start thinking about a baby in the next year or so. I have other issues, fibromyalgia is a big one. I'm worried about that one while I'm pregnant, but I guess I won't know what I'll feel like until I do it:)

Gerdhater - Are you satisfied with the surgery so far? You're still experiencing a little bit of reflux?

I want to do the Linx first and then if it doesn't do the job, then later on I guess I can think about the Nissen surgery. That one just scares me more. I've never had surgery ever, so I'm worried about the Linx too :/

I'm so glad that you're happy with the results of the Linx so far! When did you have it done? So you've been improving a little bit everyday then? It's proving to be quite a success for many people, so yes, I think it's a good shot for me! I'm been taking these darn PPIs for 14 years and for the last 5 they only work some of the time. I still have heartburn everyday even on them twice a day. The 24 PH test showed that I was still having reflux, both nonacidic and acidic reflux while on the PPI, so the doctor pointed me toward surgery. I was thinking about it anyway. I had read quite a bit already on the Linx and asked him about it. He said that he would recommend the Nissen only because of the success rate and how many years it's been done. But he said that if I'm interested in the Linx, he told me to go to USC. If I remember, did you go there? I'm hoping to get a consultation with Dr. Lipham.

Any surgery sucks, just FYI. I get really nauseous from anesthesia so that's my biggest issue. Make sure you ask them about that - they can put something in your IV just in case. I'm just super sensitive so I had the meds in the IV, a patch and pills but it finally cleared up 2 days after surgery. It worked though because the surgery before that I was throwing up nonstop afterwards from the anesthesia.

But overall it's worth feeling weird for about a week, 2 at the most. You can do it :)

INSURANCE UPDATE:

I just checked www.myuhc.com and have a new bill for $2,500 for LINX. It says this:

"Service Description: Esophagus procedure using a scope (laparoscope).

Claim Codes: PE* Based on the information provided, this service is unproven and is not covered. Therefore, no benefits are payable for this expense. In order for this service to be considered for coverage, scientific evidence must be submitted, that meets the standards described in your benefit plan language, that demonstrates the safety and effectiveness of this service for your particular condition. If the service was received from a participating provider, the provider may not balance bill for the service unless the member has given pre-service written consent to the ordering or rendering provider to be billed."

I just called KNOX and left a message for them to send me a copy of the pre-approval. I hope they can and I don't have to pay!

I'll update as I know more

Pat Fill said...
NoDoubtLove
Wow!, please keep us informed about UHC denial. Our family received the same information and still applies after three appeals.

😩😩😩😩😩

Was your total the $2,500? or around there? When I was reading that people on here weren't covered, I was thinking it was the full surgery amount of $25,000 or more. I don't have $2,500 but this device has changed my life so much that it is worth it... but I'm still going to try to get insurance to cover it! I have so many bills from the bad GI doctors and tests they did that were pointless and had to be redone.

The lady at the hospital said this is normal and not to pay yet - they will be fighting it for as long as they can. So that's at least good. I have to call billing right now.

Apparently Medicare doesn't give them any issues with this surgery - so that's a good sign for anyone with Medicare!