I want to put everything together for those of you who have been looking for an update on our trip to the Mayo Clinic. If you don’t want to read the whole thing, that’s okay… here is a brief summary first:
While I believe that Mary did have POTS, it looks like the actual condition is gone; but she does still have orthostatic intolerance (I’d call it POTS Lite). Her current main problems are still chronic nausea and chronic fatigue. The good news is, we have a plan, and it looks like we can get Mary to a point where she can function more normally. The doctors and other folks at Mayo Clinic are incredibly thorough, efficient, organized, and kind. Thanks to all of you, so much, for your support, prayers, cards, and kind words.
Here is a more detailed account for those of you who want to wade through it:
POTS stands for Postural Orthostatic Tachycardia Syndrome, and encompasses a lot of different symptoms, the eponymous one being tachycardia upon standing. Mary was diagnosed with POTS in 2014. The testing done at Mayo Clinic involved a tilt table test, blood work, overnight oxygen monitoring, overnight heart monitoring, overnight blood pressure monitoring, and 24-hour fluid output collection (that was fun, all at once). It was quite miserable for those 24 hours, but we tried to remember this is why we made the trip.
Anyway, the results of the testing showed that Mary’s tachycardia upon standing did not rise to the level of POTS. We were told at the very beginning of this ordeal in 2014 that POTS would eventually go away. It looks like that has officially happened. So… why isn’t she better?
The answer is, essentially, because her brain got used to being sick. It’s a problem with the Central Nervous System called Central Sensitization. It means that her brain got stuck in constant fight-or-flight mode, causing Chronic Fatigue Syndrome.
We saw four different doctors (it was so cool how everyone had all the information so that most of the time we didn’t have to repeat ourselves over and over; also, they ALL knew about POTS!!). They were all in agreement that this Central Sensitization was the main factor in Mary’s current illness, both the fatigue and the nausea.
We attended a two-day class to begin to address how to deal with this problem. It involves retraining her brain so that it does not constantly have her in fight-or-flight mode. We also had a GI consult to specifically address the nausea, too.
So, right this minute, Mary has some tools to start getting better, which is huge.
Additionally, the Mayo Clinic offers a 3-week course/seminar/treatment program to teach these skills in a somewhat aggressive format (outpatient, but daily Mon-Fri, 8-5 for 3 weeks). We have talked to several people who have gone through the program, and have heard nothing but positive feedback. Mary really wants to do this program, and feels ready to do whatever it takes to get better. We need to see if and how much insurance covers, because it is pricey. But if we go ahead and sign up, the Mayo Clinic personnel can work on getting the insurance approved; they are experts at this, so we have hope. It would also involve being away from home and work for almost a month, along with the cost of travel and accommodations. We have some ideas about all of this, and if insurance is approved, we will most likely do it. We will have to consider the timing, too.
There is much to discuss, and once we get home, David, Mary and I will have to sit down and talk about what all will be involved and how to deal with it all.
I want to acknowledge some people who have been so supportive of us while we have been gone:
First and foremost, David. He kept the home fires burning and took care of our grieving puppy dog, who has nothing to live for because she is convinced Mary is never coming back! David has been incredibly patient and kind with her. He also took care of the kitty cat, who is a little easier to deal with, but it is still a chore, feeding her and cleaning the litter box, etc. He is a hero.
Next, the people I work with and for: Wade, our owner; and Brandy, Sonia, and Selina, who backed me up while I was gone for nearly 2 weeks. They have been incredibly supportive and accommodating, and not everyone, not every company, would be.
Friends and family, who have kept up with this whole saga, for 5 years now, and have loved us and prayed for us all the way through. Please keep those prayers coming!
Finally, our beautiful church family. Your love, prayers, attention, cards, and just general awesomeness… I don’t know what we would do without you. We have constantly felt your love and your prayers throughout this whole ordeal. And, of course, we thank God for loving us and leading us and blessing us with his matchless grace and peace.
Edited to add: Ack! I forgot to acknowledge my awesome neighbor Rachael, who has helped take care of the pup on workdays when David is out of the house! You are the rockingest of rockers!