Final Mayo Update

Many people have asked what the latest news if from Mayo. The easy, short answer is, “It’s complicated.” And others have asked how Joel is feeling. The short answer to that is, “About the same – bad.” Here is the long version.

The final Mayo notes have a list of 10 health concerns. Here are the most concerning ones, in order of priority.

  1. The rheumatologist at Mayo does not think it is lupus. Kinda crazy to have three doctors, including one from UCLA, say he does have lupus and then this doctor doesn’t. However, he does see an immune deficiency in the blood tests they ran. Nobody has previously checked for this so it was news to us. This would explain why the lupus medication isn’t working because it is suppressing his immune system rather than boosting it. This is the biggest question we need to solve, but the only way to do it is to monitor it over time. Joel needs to see an immunologist here in Las Vegas so he can look at the immune deficiency results and continue to test them. Joel went to the primary care doctor yesterday to get the referral for this specialist. Interestingly, the Mayo rheumatologist doesn’t want Joel to taper off the immunosuppressant just yet.
  2. The prednisone that Joel is taking is veiling symptoms of his current disease and they cannot tell which symptoms are from his disease and which are side effects from the medication. So Joel will have to taper off slowly. This will be pure torture, but it has to be done to get to the root of the problem. At the current rate they are recommending, it will take him 6-7 months to taper off of it, during which our rheumatologist here will have to closely monitor him. The doctor in UCLA said the prednisone is saving Joel’s life and every time he has tried to go off of it, even slowly, he has gotten sick. The prednisone could also be causing the tremors Joel is having, or it could just be the stress on his body.
  3.  They really cannot explain why Joel has had two bouts of aseptic meningitis. If he gets it while tapering off the prednisone, it could indicate lupus again.
  4. Joel needs sinus surgery. He has severe sinus disease. For a normal person, sinus infections aren’t that big of deal. But being on the immunosuppressant and with a possible immune deficiency, Joel can’t fight it. Also, there is a possibility that with chronic sinus infections like Joel has, the infected fluid can leak into the brain and cause the meningitis. Based on CT scans, they don’t think this is what happened but there’s no way to know for sure. Either way, surgery will decrease the amount of infections. The surgery is currently scheduled for October 11 at Mayo, but we’re going to try to have it done here in Las Vegas through our insurance so we don’t have to pay cash for it. Our primary care doctor has requested the CT scans from Mayo and then will refer us to a local ENT for the surgery. They also took some cultures and they were positive so they called us after Joel had left Mayo and gave him a new anti-biotic. No doctors were headed down this sinus disease road at all, so we’re thankful Mayo caught it.
  5. They did a sleep study on Joel and he stopped breathing 162 times in 8 hours, and this leads the doctors to believe he may have sleep apnea as well. It could be hereditary as Joel’s dad has sleep apnea, but Joel believe it’s the weight gain from the prednisone, so he does not want to pursue getting a C-PAP machine at this time.

While the care at Mayo was the best we’ve ever had, we were confused and frustrated at the results. We put hope in a concrete diagnosis and a magic pill, and when we didn’t get it, we came crashing down. However, now that we’ve had time to process everything, we realize the results are actually encouraging. The idea that there could be no life-long disease like lupus is awesome! And we certainly can’t deny that this could have been a divine intervention – that they don’t see anything that indicates lupus when others did, is amazing. And we know a lot of people are praying!

So for now the game plan is to see more specialists, do more tests, have surgery, taper off the prednisone and see what happens. Time will tell.

And now please sign the attached HIPPA form. Ha-ha, just kidding!

Thank you for all your support and love – the encouraging notes, prayers, and donations. Each of them mean so much to us. We could not go through this without you and our awesome God who is always on our side.


1 Comment

  1. Please don’t ignore the sleep apnea. Getting adequate oxygen to your cells (via C-PAP or whatever it takes) can only HELP with whatever else is going on. You certainly need to be well rested to deal with your health issues! Lack of sleep/oxygen can lead to all kinds of issues.
    Praying that your health is restored SOON.

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