2013 Mayo visit

I just read through all of Mayo’s tests and notes trying to figure out Joel’s week there. We’re still waiting for a few more to come through, but I’ll try to explain some of the major things we learned. First, once again, Mayo proves to know what they’re doing. I always encourage anybody who has undiagnosed health issues to go there. In just four days, Joel saw five doctors who ran countless tests.

A nerve conduction test showed severe nerve damage. The rheumatologist said this is most likely due to his repeat meningitis episodes and liver damage. And the pain he experiences is caused by the nerve damage. In the tests, Joel didn’t feel many of the nerve shocks. The neurologist said it wasn’t the worst he’s seen, but it’s definitely a big problem.

We both were crushed at the news the rheumatologist delivered. He thought, despite some of the indications of auto-immune diseases, that Joel does not in fact have auto-immune hepatitis or lupus. However, he could not explain what exactly it was. We didn’t understand that because many doctors have agreed with this diagnosis and the one medicine that works for Joel is an immune suppressing drug. After this appointment, we felt like we were at ground zero again, which was very tough to take. Interestingly, Joel’s rheumatologist here in Boulder didn’t think it was necessary to go to Mayo. He’s a great doctor, but I’m glad we didn’t listen and pushed the envelope with going to Mayo. I have mentioned this before, but it’s easier to face a giant when you know what it is or what it might do. It was also frustrating for me not to be there because I wouldn’t have let the rheumatologist get away with not explaining things or saying just go do more tests in Colorado like he did. My little golden retriever (Joel) is too nice to be pushy/bossy like I am.

The day after the rheumatologist, Joel met with a hepatologist, which is a liver specialist. His news was easier to take. He was confident that Joel has a liver disease, but we just haven’t found which one. He said auto-immune hepatitis was still a possibility, just not a likely one. He is going to get a tissue sample from Joel’s liver biopsy in Nevada to study it. He’s also doing some more tests that we haven’t heard the results of yet and gave us a few names of diseases to consider, but nothing concrete yet. Joel will need to find and see a hepatologist here who can monitor him and continue to run tests. The big concern for me personally is that they want Joel to stop taking the medicine that is working for him so they can look at his liver clean. It makes sense and Joel has already started the process, but I know what has happened in the past when he has gone off it and it’s never been good.

The other thing that complicates Joel’s case is that his immune blood panels still show major immune system issues. So he needs to see an immunologist on a regular basis in addition to the hepatologist. Thankfully, there is a Mayo doctor here in Longmont (thank you, Jesus!) that they have referred him to.

Basically all that comes down to is instead of a diagnosis of two auto-immune diseases, we’re looking at a liver disease with immune system complications and severe nerve damage.  So for now our plan is to basically see more specialists and run more tests with our new direction. And we watch and see what his liver does off the medicine.

Thank you so much for all your prayers! And special thanks to our friend, Jason Byrd, for going with Joel to Mayo. Sometimes I think, this has been going on for over 2 years now, how can we still not have concrete answers? And then I think about a dear, sweet friend of mine in Las Vegas who has struggled with a disease for more than a decade with the wrong diagnosis, medications, etc. etc. And the woman has more joy than anyone I know! Her smile and laughter always brightens my day. And the other thing I try to remember is that sometimes we just have to thank God for unanswered prayers, even when it doesn’t seem like it’s what you want at the time. He’ll show us our path in His time.

 

 

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Off to Mayo …

Many people have asked, “when is Joel going to Mayo? What are they going to do?” I haven’t been so great on keeping up the blog. Sorry about that. So Joel just left tonight and is headed to Las Vegas where he is spending the night with our friends, Jason and Natalie. Then on Monday, Jason and Joel head down to Scottsdale. Special thanks to Jason for going with Joel as I needed to stay home with the boys for school and work. Joel’s first appointment is Tuesday at 9:00 am and he has specialists and tests already scheduled for the week. Mayo doesn’t work on the weekends, so Joel and Jason will head back to Vegas on Friday and Joel comes home on Saturday with our friend Dave who is coming for a visit. If it’s necessary, Joel will go back to Mayo the following week.

I also get asked, “What are our expectations or hope for the trip?” Well after more than two years, our hope in finding some miracle cure or treatment is pretty low. Although we do still believe God can cure him, I think it was early this year when I finally came to the reality that this could just be our life from now on. We’ve learned to adapt and cope and each day presents a new challenge. It doesn’t mean we stop looking for answers though. Some days we make it and some days we just throw up our hands and say, “We give up today”! That’s usually when I (Mom) call a 7:00 bedtime for everyone!

But we NEVER go it alone. God is always with us giving us strength when we need it and our friends and family help us more than they could ever know. Many times, I feel like a thank you is just never enough.

While our expectations may be low, we do know a few things. First, Mayo knows their stuff. Their teams of doctors look at a big picture and narrow it down from there. Last time Joel left there with about 10 to-do items, some of which they told him would be “like hell on your body.” I’m so proud of Joel to say he did almost all of them. The only thing he didn’t do was get a cpap for his non-breathing during sleep – he wanted to try stopping one of the meds that was causing weight gain first and then lose the weight in hopes to sleep/breathe better. In total, he’s lost 52 pounds! I don’t think he sleeps any better, but he does feel better with the weight. And in typical Joel fashion, he says, “Only 100 more pounds to go” (as I roll my eyes at him).

The other thing they told him to do was get off the prednisone because they could not tell which symptoms were from the medicine and which ones were from his disease. This was by far the hardest for him to do, but he made it. Our hope is that they can see things more clearly this time. And finally, Mayo has the best testing in the country. I say that for people to know that when you do bloodwork or other tests through your regular doctors, there are often false positives and negatives.

Why? Because they use generic kits that go to big labs and tests are run by machines. In what our doctor calls, “the ivory towers” (places like Harvard, Mayo, Johns Hopkins, etc,), the tests are done individually by trained professionals specifically looking for certain things. So my recommendation to people is to always get more than one opinion and try sending your blood work to another lab before taking a medication that will cause severe damage to your system.  With Joel’s compromised liver, he wouldn’t have lived long on the dosages of prednisone he was on. It helped the joint pain and swelling though. So for now, he chose quantity of life over quality.  Watching him suffer so much, I can’t say that I would have chosen the same, but I’m so glad he did. And speaking of liver, we think Mayo might want to do a liver biopsy as part of the testing, but we’ll see.

I’ll keep you all updated here as things there progress. We ask for your prayers for Joel and his health – that the doctors see things clearly and better treatments can be found. Or as always, 100% healing! Thank you!