Hello CU!

By Kayla

Wow! It has been too long since I posted an update. Sorry about that! I did post on Facebook about Joel’s recent diagnosis, but it’s easy to miss a post.

Per Mayo, Joel saw the chief of hepatology at CU in Denver. We loved the doctor and staff, the hospital and whole experience at CU. If it’s possible to love a hospital, we did! Having quality care and ease of administration really helps when you already have to deal with being sick. And the best part is we can continue to go to CU and not have to go back to Mayo again. Not because we didn’t like Mayo, we’re just a lot farther from it now. The Mayo doctor did say we were in a lot better place for medical care, which helped confirm for us one of the reasons we moved to Colorado. But let’s not go too far, this Husker alum will never root for the CU Buffs. If you’re reading this Chad Dubbe, sorry!

After talking with Joel and getting his records, the CU doctor called to say he is “confident that Joel has PSC – primary sclerosing cholangitis.” While it definitely helps to have a name to the disease, unfortunately there is no real different treatment from what we’ve been doing. Eventually Joel will need a liver transplant but his immune system will still attack the new liver. They are trying a new medicine on him and the good news is that his liver panels seem to be stabilized. As long as the medicine continues to work, we can wait on the liver transplant. Furthermore, this isn’t the first time we heard a doctor say he/she is “confident” on the diagnosis so we’re not totally convinced, although it does seem to fit many things.

The bad news is that Joel continues to have a lot of pain and fatigue despite some of the medications. A majority of days are bad for him, but every once in awhile (maybe like every 2 weeks), he gets an okay day. Both the CU and Mayo doctors recommended Joel see a neurologist for some of the things that showed up on the MRI of his spine and an immunologist because Joel’s immune levels are always low.

Joel put this off for a couple months though. I think mostly because he gets tired of seeing doctors and I definitely can’t blame him for that. But tomorrow, he is going down to the CU campus again to see both specialists on the same day. Please pray for him and his strength to get through it all. I’ll try to keep you posted as we hear new things from them.

In other bad news, we were denied social security disability for the first time a couple weeks ago. We have hired a company to represent us and are now in the appeal phase. 85% of all cases are denied the first time, so it wasn’t surprising for us, just frustrating as it has been two years since Joel has worked. I could make a lot of other comments here about how social security disability works or doesn’t work for that matter, but I won’t. However, we would love your prayer that the appeal goes fast and is approved. Thank you!

And the most awesome news of all is God is good. All the time. He takes care of us in our time of need and he provides great friends and family who support us too. We take one day, one moment at a time and are encouraged by our God and those around us. And for that we are incredibly thankful.