kdubois

Kelly, Volunteer Mentor @kdubois

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Activity by Kelly, Volunteer Mentor @kdubois

kdubois

Interestingly, I never had heartburn until I was pregnant, too. It went away for about two years after I had my youngest, and then the GERD started constantly all of a sudden and stayed. I know that my GERD and hernia were caused by my sphincter ceasing to function. I'm not sure if there are other causes. At least you know that Zantac works a little better than Prilosec for you. You might want to keep a journal of which foods are better or worse for you, and this way you can keep track of symptoms to see if they worsen over time.

kdubois

Mayo Clinic does not require you to have a referral to come to them. With that said, some insurance plans do, so you'll want to be sure to check.

kdubois

Hi @boochie. Thanks for posting this unique question. Can you affiliate the burping with any other foods, or does it happen certain times of the day or night more than others? @dawn_giacabazi and @safetyshield, do you have any experience with this?

kdubois

Hi @karen44, @dandl48 poses an excellent question. How is your primary physician addressing this? Are you seeing a GI specialist? Can you tell us about some of your other symptoms?

kdubois

@saucy Interesting... they weren't able to do a LINX on me... they said my hernia was too large. With the LINX in there, are you able to have MRIs?

kdubois

Fri, Feb 17 at 5:25pm CST by @kdubois re: Acid Reflux and its Symptoms in Digestive Health · View  

Hi @mwarenski, both my Mayo GI and Mayo Pulmonary doctors told me that GERD can cause asthma. Perhaps that could possibly explain chest pain that you are experiencing.

I was diagnosed with mild asthma as a result of GERD, but since I had surgery to correct the GI issues that were causing my GERD, my asthma subsided, as expected. My primary GERD symptoms would be waking up choking on stuff that had come up from my stomach while I was sleeping in addition to having heartburn constantly.

kdubois

I hope your appointment turns out well today and that you find relief soon.

I cannot sue my doctors. I learned about the misdiagnoses and brain injury six years after they occurred, and in the state I live in, the statute of limitations for medical malpractice is only two-and-a-half years. My primary care doctor and pharmacist have been prompting me to write them a lengthy letter to help them "learn" what they did, which I plan on doing soon.

I'm doing much better, which I entirely attribute to Mayo clinic. With that said, I still don't feel "normal" and I know it will take time. I'm still detoxing from these medications, but I started acupuncture in January, and it is helping with the chronic body pain and inflammation. (I can't take pretty much all heavy-duty pain meds because I don't properly-metabolize them, and basic meds like Tylenol and Advil don't really help, and I don't want to take anything long-term.)

If my symptoms haven't progressed by mid-year, I already talked to my PCP and he supports me in sending me back to Mayo's Center for Individualized Medicine to see if they can help me.

kdubois

Fri, Feb 17 at 9:43am CST by @kdubois re: fibromyalgia pain in Chronic Pain · View  

The acupuncture I've been doing since early January also alleviates my inflammation. The term they use is actually called internal "heat" that they are helping the body release.

kdubois

I looked it up, and Prevacid and lansoprazole are the same drug. (Drugs have two names. In this case, Prevacid is it's "brand" name.)

And it is a proton pump inhibitor. My doctors had always told me to take my PPI capsule every morning to obtain the best relief from GERD during the day. If you are still getting heartburn, and you are taking it as prescribed, I suggest talking to your doctor.

If you Google lansoprazole, the resulting page will show a turquoise-colored box on the right side of the page, and you can read more about it. This info is derived from valid, reliable sources, including Mayo Clinic.

After my medical experiences for the past decade-plus, I'm considering getting an Advanced Certificate in Analytic Epidemiology, which will help me perform better research. I want to write a book about what happened to me... due to my symptoms of P450 drug metabolisms issues, which doctors around the country are widely-unaware of, I was misdiagnosed with a rare endocrine condition, had brain surgery that I later learned I never needed (which resulted in a brain injury), etc. My home doctors were prescribing me tons of medication of that I don't properly-metabolize, making me sicker and sicker as time went on. Doctors know about the P450 system, but they are pretty much unaware off the issues that can be caused by inhibitive/inductive drugs on Cytochrome P450 system, which can happen even if you don't have polymorphisms. And the more meds you take, the more likely you are to be subject to adverse drug-drug interactions. (I'll also need a pharmacist to co-author it with me.) If I hadn't taken myself to Mayo Clinic in September 2015, had them work on me for following 1.25 years, and had these pharmacogenomics tests done, I'm certain that I would have passed away by the end of 2016 due to these drugs and the "healthcare" I was receiving at home.

kdubois

I considered going to the Florida offices, but I ended up going to Minnesota due to logistics. After seeing the success I've had at Mayo, a friend of mine took her daughter to the Florida location and has had much success there.

Regarding the Prevacid, which is an H2 Antagonist, from my experience, I don't feel they are as strong as proton pump inhibitors (like Nexium), so that could be why you feel the acid reflux sooner with Prevacid than with Nexium. It could also be whatever food you had eaten at the time.

They only way to determine if you have cytochrome P450 enzyme drug metabolism polymorphisms is to have genetic testing performed like I did. Currently, it is very expensive and insurers usually don't cover the costs, BUT last week I learned from Mayo's Center for Individualized Medicine that sometime mid-year 2017, they are planning to make a larger set of pharmacogenomics tests more-available and at a very reasonable price. (The tests will use saliva instead of blood.) They will be orderable via your Mayo Clinic primary doctor if you have one, or your home PCP will be able to order the tests via Mayo's pharmacogenomics partner, OneOme. They'll mail the test kit, you create the sample, and you then send it back to them for processing.

I've never worked in the medical field directly. I'm currently not working, but my trade was technical writing, meaning that I wrote specifications for software, user's guides for software and hardware, and technical documents. I have written for several medical devices. My PCP calls me his "professional patient." (My mother was a vascular surgery nurse for 40 years though.)

kdubois

See above for some answers to these questions. And you are very welcome!

kdubois

They don't know why I have the pains. With that said, it's definitely getting better with time. It doesn't worry me at all, and it doesn't prevent me from normal activities.

You never know regarding the weight... you and I are different heights and have different circumstance, so they may be willing to perform surgery. Never know until you ask.

Interestingly, I literally just spoke with Medicare today regarding insurance, and I also obtained some Medicare/Mayo payment info from Facebook last week when I saw that someone else asked about Medicare and Mayo answered them.

I have two insurances. I have Medicare Part A as my primary for in-patient hospitalization, and my secondary insurance is via my husband's employment. Mayo is billing my in-patient, hospital stuff from October to Medicare Part A first. Anything not covered will then be billed to my secondary insurance, which Mayo has always accepted despite that I live in Western New York. The Medicare Part A deductible for 2016, when I had the surgery, was $1,288, so I will owe that amount to Mayo. (The Medicare Part A deductible for 2017 is $1,316.)

Based on your age, I assume that you have Medicare Part A, which would be used toward the surgery & hospitalization; Mayo would submit your claims and Medicare will reimburse them directly. With that said, you should be aware that Mayo is a non-participating provider under Medicare Part B, which is used to cover out-patient visits, etc. This means that Mayo sees Medicare Part B patients, but they do not always accept assignment for payment. When this happens, per Medicare, Mayo submits the claims for Part B claims to Medicare, then Medicare pays you, and you would be responsible for reimbursing Mayo.

Some info: http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare

kdubois

Wed, Feb 15 at 2:00pm CST by @kdubois re: fibromyalgia pain in Chronic Pain · View  

I have fibromyalgia but can't take pain medications, so I started acupuncture in early January. I'm surprised by how much it helps me.

kdubois

I've had excellent doctors in all of the specialties I've seen there... GI/Hepatology, Endocrine, Sleep, Nephrology, Pulmonary, Neurology, and NeuroPsychology. (Hmmm... I think that's all of them.) Doctors at Mayo don't strictly stick to 20 minutes and then kick you out the door like they do elsewhere in the country. They spend as long as you need with them. I've even had Mayo doctors chat with me and walk me to the elevator, and I've had Mayo doctors hug me after giving me good news. These are truly nice people.

As part of the pre-surgery testing, they will most likely have you do a manometry and then an esophagram if they want to further-test your esophagus after the manometry. You will need to go off of any PPI and H2 Antagonist medications, and then they will most likely want you to have an endoscopy (I think). They are checking to see what level of esophageal burn you will have from the hernia and not taking the medications. I've had them all performed there, and I've also had a colonoscopy there. Instead of prescription stuff for the prep, there is a prep that I do that uses Dulcolax and Miralax. You can google it and then ask your doctor before the colonoscopy if they feel this is a viable alternative. It's much more tolerable when it comes to having to taste it.

Many surgeons won't perform many types of surgeries if people are heavy because the weight can negatively-affect the outcome. In January 2016, I weighed in at Mayo at 198 pounds. After they figured out that I don't properly-metabolize certain medications later in the year, I was weaned off of them, and I lost ~50 pounds by the time I went back to Mayo in August.

I cannot even tell you how glad I am that I had this surgery. I wish I had done it years sooner!

kdubois

I've heard about the wrap being too tight from one person, I think here on Connect, but I'm glad I had the surgery.

For the esophagram...
1. The radiologist stands in a small area nearby looking at a screen. There is also at least one other person with you while you are having the test. They are wearing something to protect them from the radiation.
2. They have you step up onto a platform, put your back up against it, and then drink a small amount of alka-seltzer. They watch it go down your esophagus, and they tell you to try not to burp. They then give you some barium with a straw, have you drink it, and watch it go down.
3. They then lower the table so you are laying down with your back on it. They have you drink more while laying down and watch how your esophagus works. (They hold the cup and straw for you.)
4. While you are laying down, they then have you flip over to lay on your stomach, and they have you drink more while they watch it.
5. Then, they have you turn onto your back and onto your front again. Maybe drinking some more barium.
6. After they are finished, they'll put the table upright again, and you are done.

The barium wasn't that bad and seemed thinner in consistency than I remember from years ago.
Afterward, Mayo gave me a bottle of water to drink to help get the barium out of my system. At home they didn't, but I knew to drink a lot that day from learning so at Mayo.

What size is your hiatal hernia? Mine was three-to-four centimeters. In imaging reports, radiologists act home called it small, but every Mayo radiologist called it large. (I thought that was interesting.)

The incision pains weren't bad at all and never have been. I do get small pains in my abdomen now. My PCP think it's my diaphragm. As soon as they started in early November, I emailed Mayo and they called me within 15 minutes to discuss. (

kdubois

I've also used Expedia.com, but you have to be careful because changing dates for flights and hotel can cause you to lose any refunds.

The best hotel prices I ever got were through American Airlines. After I booked my most recent flights, the web site asked if I wanted to book my room using them. We got the nicest room we'd ever had at the Kahler Grand at the lowest prices we'd ever paid.

If you go to hotel web sites and order directly, many also have specials for AAA, AARP, etc.

kdubois

I believe what you want is a thoracic surgeon.

Have you been to Mayo before? They will likely want you to meet with a GI doctor first, and they will then order testing and maybe some labs. You usually don't get to choose which doctor you get, but that's okay because they are all great.

I see Dr. Jeffrey Alexander in GI. He then finds a thoracic surgeon. My thoracic surgeon is Dr. Francis Nichols.

I first met Dr. Alexander in January 2016.

I had a follow-up with him in August, and at that time he said that I was now a candidate for the surgery because I had lost some weight, was healthier, and they had also learned that I cannot take PPIs due to genetic issues. He asked if I could stay a week longer to do the testing and have a subsequent follow-up with him and the surgeon because I lucked out and another patient had just cancelled all of these same appointments I needed.

At the follow-up, I met with him again, and then he pulled a thoracic surgery PA and Dr. Nichols into the room. We talked everything over, and Dr. Nichols then pulled his schedule/calendar up on the computer screen and we picked a surgery date.

kdubois

My surgery went very well, and I'm so glad that I had it done! I don't have to sleep sitting up anymore. I don't have to avoid certain foods anymore. I NEVER have heartburn/GERD.

Here's how it went:
• My husband and I flew into Rochester on a Sunday.
• The next day, I had a pre-op appointment with my surgeon and a PA, and I did my pre-surgery labs. (They also had me do one imaging test to check the functionality of my esophagus because some of my tests the August before indicated that it didn't always function properly, but they found that it does.)
• The surgery was on a Tuesday, and I was discharged Wednesday afternoon.

Mayo will allow you to fly home the same day you were discharged if you want to. I chose to stay until Saturday.

They will give you food guidelines because you can't just eat normally right away.

The follow-up imaging is done at your home location, and you then mail Mayo a CD of the imaging. After they review it, they will call you for the follow-up appointment.

Weirdest thing is that most of the pain was in my shoulders afterward despite that I had five abdominal incisions. Apparently, this is normal because while performing the surgery, they fill your tummy up with gas (CO2, I think). They only way for the gas to dissipate from you body is for it to rise up to your shoulders. They will give you pain meds for this. (I can't take pain meds, so they put some kind of warming device on my shoulders, and when I was back at the hotel recovering, I used ThermaCare.)

I would not go to a general surgeon for this. Here's why... they needed to detach my diaphragm, esophagus, and stomach and move them about two inches lower. They then tack everything down, and then they perform the wrap of the stomach around the base of the esophagus. (If the esophagus is performing correctly, which they figure out via an imaging test called an esophagram prior to the surgery, they will do a 360º wrap of part of the stomach around the base of the esophagus. If the esophagus doesn't, then they perform a 270º wrap of the stomach.

kdubois

@betterb4 I read above that you had a colonoscopy. What imaging exams have been performed on your GI system to view the area? Has your doctor ordered anything to view the area where you feel (lower esophagus/upper stomach)?

In addition to the foods listed above, I would avoid sugary foods, which I love. It would help me to drink some fat-free milk after dinner. Milk is a base and can help reduce the acid. Prior to my surgery, I would eat dinner by 5:00 p.m. Not ideal, but it did help.

From what I've learned, Nexium was actually never intended to be used long-term; the package insert states the time frames. It's also not good to use Tums long-term. With that said, heartburn and esophageal burn can cause other issues long-term.

kdubois

I truly wish I had gone to Mayo sooner -- at least a decade sooner. They not only figured out this issue, but they figured out a bunch of other issues in other specialties for me as well, including endocrine and sleep.

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