About a nose and a spine …

What’s this? A timely update! Yes, don’t fall over, but here’s an update just four days after our doctors’ appointments. And yes, I said OUR. Since this is a health blog and I could use some extra prayer, I thought I’d include a note about me too.

Joel and I both had doctor appointments on Thursday that didn’t go great. I saw an ENT surgeon who is recommending I have surgery on my nose to fix a few things (no, not plastic surgery although I could do that at the same time if I wanted). Oddly, for a variety of reasons, people can develop holes in their noses. I was born with a small one and then had an accident when I was younger.

Sidetrack story for your entertainment – I was about 8 when I was getting out of our family’s van. Unbeknownst to me, my foot got caught in my little sister’s jacket string. I jumped out of the van and fell headfirst into the gravel rock driveway. I got a few stitches on my nose and the widening of the hole began. Weird, I know. But then again, I am the girl who also cut two fingers off and ran into a brick wall while playing four square.

Anyway, I checked on it a few times when we were in Las Vegas but it was small enough to not have to deal with surgery. But now it is the size of a nickel, I have a deviated septum and some other blockage so it’s hard for me to breathe, especially at night. The ENT here has recommended surgery. You’d think not being able to breathe would be a no brainer but it’s a four-hour, complicated and rare surgery that requires a nose cast for 1-2 weeks. Yes, I said nose cast. Ugh. So I contemplated not doing it but a couple guys in our small group recommended the deviated septum surgery and last night I had a very difficult time breathing, so I guess I will go ahead with the surgery. Ironically, I have to be cleared by a rheumatologist to make sure I don’t have an autoimmune disease (which is another reason you can get holes in noses) before the surgery. I am confident that I do not have an autoimmune disease, but I told Joel if I do, we’ll throw up our hands and move to Fiji.

I’m still trying to figure out the best time to have the surgery, but I’ll keep you posted when I do. I’m going to need a lot of prayer for that one. Okay, you can let the nose jokes commence now.

Since I wrote last, Joel has seen the neurologist, immunlogist and rheumatalogist. The neurologist did not recommend surgery on Joel’s herniated disc that is pushing on his sciatic nerve, but did recommend oral steroids for Joel’s overall case. To which we said no to because of the terrible effects of them. Then he suggested steroid shots, which we again said no to. We know that with Joel’s already compromised immune system, his life would be severely shortened by long-term steroid use. Plus, the side effects when he was on it were almost unbearable. Prednisone can be a life-saving drug and helped Joel with some of his symptoms, but we’ll save it for when we absolutely have to do it.

The immunologist ran some labs and found the usual immune markers off. Not much we can do about that though. Thankfully, one medicine he is on, controls his immune system enough to keep his liver functioning well enough. The important info came at the rheumatalogist. He suggested Joel have the surgery on his spine, which we probably won’t do at this time. But he also said there’s a disease commonly associated with Joel’s psc (primary sclerosing cholangitis), called ankylosing spondylitis (an auto-immune disease of the vertebrae). He said one way to know if Joel has it is to give him the medicine for it and see if it works. But it’s a “heavy hitter” so you don’t want to take it if you don’t have that disease. The medicine comes in a syringe of .8 ml. Each dose is $1,200 and it’s given twice a month. Thankfully, the doctor gave him samples and said if it works, we will have to apply to insurance to cover it. I told our small group I wasn’t sure if I should pray if it works or not. I do pray Joel’s pain is gone, but the medicine working means he does have the ankylosing spondylitis and it has some damaging side effects too. The doctor said it would be a week or so before we knew if the medicine works or not.

It has only been four days but today Joel showed me his hands could make a fist. Something he’s been unable to for two years! The jury is still out and I can’t honestly say whether or not I am okay with another disease and drug, but if it helps relieve some of his pain and we can deal with the side effects/long-term damage, then it’s worth it.

We continue to be amazed at God’s blessings for us on this long journey. We have our ups and downs, but he is always faithful. And we sincerely appreciate the support and love from our friends, family and church. Our faith and you is what keep us going.

-Kayla

 

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