Hey there!
So I thought I'd give you a little update now that we're home from Mayo Clinic. I'll spare you all the details -- for your sake and for mine -- but here's the bottom line....
They ran lots of tests while we were there and my gastroenterologist said that in 40 years, he's never seen a case exactly like mine! (Not exactly reassuring when you're at MAYO CLINIC!! lol.) But regardless, what they've determined is that my esophagus has issues pushing the food down and then not allowing anything to back up. Then the food goes into my stomach, which apparently works like a rock star but then when food leaves my stomach and goes into my intestines, they don't work properly to push food through. That means that the food can sit in my gut for hours on end, creating an excess of {good} bacteria which creates a lot of problems.
The two issues (esophagus and intestines) aren't related so I don't fit into a neat and tidy little diagnosis box. Since they haven't seen another case just like mine, they don't really know exactly how my body will respond to treatment so it'll be a bit of trial and error for awhile. BUT, the plan for now, is two different meds to treat the two different issues....an antibiotic to kill the excess bacteria and a heartburn med to help my esophagus. I started the meds 5 days ago but it's been a mixed bag as to how I've felt each day.... some days are good and others have still been awful.
Our prayer is that the meds will work quickly to help me feel better and that they'll not be something I need long term. In some cases, patients end up needing to have repeated (or even permanent) rounds of antibiotics to keep things in check. Obviously, that would not be my preference! So we'll see how things go.
We were toooootally impressed with Mayo and the entire staff. They did a lot of tests on me in a relatively short amount of time and as a result, we interacted with a lot of people there. Across the board from administrative staff to the actual care givers to even just people like the elevator attendants.....everyone was so kind. My GI dr. was WONDERFUL. We've never met a dr. who was so knowledgable and yet so kind and compassionate. We both felt like he was just such a gem and I totally think God worked it out that he was the doctor we ended up being scheduled with! He was just what we needed.
It seems like most people only need to stay maybe 5-7 days, so since we were there for 11 days, it almost seemed like they felt bad for having kept us "so long". As a general rule, they don't keep you waiting long for your appointments and everything seems to be run in a way that makes things as convenient for the PATIENT as possible. They clearly show that they respect your time and that they CARE about you and helping you get well. Their efficiency was amazing, especially considering how massive the entire place is and how many patients they must treat every day. Some of the waiting rooms held probably a hundred or more people...and that was just one waiting room of several on one floor of one building! I think there are maybe 9 buildings total (We had appointments in four of them) and I think most of them had at least 10 or more floors.
I have nothing but nice things to say about Mayo and am thrilled that we made more progress there in a week and a half than we have here at home in a year and a half. When the dr. said after my CT scan that they could clearly SEE the problem, I could have cried. He showed us the pictures on the computer and 1/3 of my gut looked like it should while the other 2/3 were not right at all! Such a relief to have them finally at least know what's going on even if they don't yet know exactly how treatment will go.
And as for food restrictions, he told me to eat as I have been while I'm on the antibiotics so that I don't introduce a bunch of gluten or whatever, that my body isn't used to, and then make things worse. But he did say that long term, he thinks I'll be able to eat whatever I want!!! HUGE answer to prayer! (Thank you, Lord!!) He said that he doesn't think the foods were ever the problem. It was my crazy gut. However some foods (like gluten) are harder to digest and were therefore exacerbating the problem. So anyway, hopefully no food restrictions before too long!
I have to say also, that there were so many times during the trip, where we could see God's hand at work in the situation. I was SUPER sick a lot of the days while we were there, but that gave them a CLEAR picture of just how bad it gets! I'm so grateful for that, even though I was miserable! And He even blessed us in a lot of little ways that might not have meant as much to someone else, but totally blessed us. Because we ended up having to stay a second week for more testing, we got to have lunch with my dear friend and teammate, Heather and her mom! God used one of my blog readers to bless us repeatedly and now I consider her to be a very dear friend who I'm missing already! And we even just "happened" to be in Rochester while this huge annual antiques fair was going on -- the likes of which, I have never seen before! (It's called Gold Rush, in case you want to look it up.) We scored all kinds of good bargains (see photo above!) on the weekend, because Mayo is closed on weekends and we had nothing else to do! There were just lots of little bright spots in an otherwise long and draining trip and for each one, I'm so thankful. God knows just what we need and just how to bless us at just the right moment.
Hopefully I'll be feeling much better soon! But in the meantime, we're thanking God for the blessing of ANSWERS, we're settling back into our routine here at home and still trying to recover a bit....while I'm so glad we went, we were both feeling a bit weary by the time we headed home.
Thank you so much for your continued prayers! I appreciate each one!
xo,
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