Second time around

In the middle of chasing a Cushing's dx for my kids, Justin & Jessica, I began to suspect that my husband also had this horrible disease. I never mentioned it because he really hates to talk about medical issues. He's getting a little better with that. Bill brought up the possibility himself. Then it was okay to talk about.

He was pretty adamant that we let his slide until the kids were taken care of. Well, a few things made him/us change our minds. One was the fact that he drove for about two hours in something similar to a blacked out state. He was pretty scared when he came to and was no where near where he should of been. He also had a hard time processing where he was from the road signs. He was in an area he drove quite often, and area fairly close to where he grew up. Normally he wouldn't of even needed signs to know where he was, the landscape would of told him.

I got him in to see the PA that the kids had been seeing and we told him our concerns. I asked about doing some testing for Cushing's and Andy gave us the orders. He also had several other things tested but at the moment I can't remember what they were. What I really remember was that Bill's first midnight cortisol came back at 39 and 7.5 at midnight is diagnostic. I didn't know whether to laugh (because it seemed we were on our way to getting answers) or cry because I didn't want it to be so. I believe he also had a high 24 hr. UFC (urinary free cortisol).

Silly me, even knowing how hard it can be to get a Cushing's dx, I assumed that surely the second time around couldn't be near as tough as the first. The kids had gotten their official dx about a week after Bill's "blackout." I decided that Bill should see a somewhat local endo that comes once a month to Goodland from Denver. I truly thought "how hard can it be the second time", I have so much more knowledge now. So we waited about six weeks or so to see this guy and I was pretty excited. Got that out of my system in the first 20 seconds! Dr. G looked over the labs we'd brought with us and the first thing he said was "Why did you test at midnight?" I knew then he would be no help. He said the results couldn't be used because they were drawn at the wrong time of day. The fact that he had two kids with Cushing's would probably not be cause to think that Bill could have it too. That would be really rare. Well, so what, that doesn't mean it can't happen.

He also wanted to test Bill's strength as Cushies quite often lose muscle. He had Bill sit with his arms straight out to his side and he stood above him and pressed down on his arms. Even though Bill's arms were shaking he couldn't push them down. He said there was no problem there. I'd already decided we wouldn't be back so I never bothered telling him that a year or more ago Bill's arms wouldn't have even budged. This is a man that used to pick up a couch, chair whatever and move it. Don't wait for help just move it. And I literally mean pick up the couch, he didn't drag it. So, yes, he was getting weaker. Dr. G had nothing to compare him to but other patients. I could go on and on about that visit but................. What for?

We then decided to cut to the chase and go to Dr. Friedman in Los Angeles. He'd helped the kids and I knew we would get somewhere with him.

So here we are one year later and getting closer to diagnosis. Bill has followed behind the kids by about a year. One difference being the kids had a dx before they had IPSS. Bill just had IPSS today and will have adrenal venus sampling on Wednesday. He had an adrenal and pituitary tumor show. Dr. F thinks it's also possible that he has aldosteronism. Hence the IPSS and AVS. Hopefully we will have some answers soon.

So no, second time around is not easier.

Both kids have a recurrence. Maybe all three can have surgery together! Only have to travel once that way. We should be so lucky.

I know there are others who suspect one or more of their children have Cushing's and will soon be in the same boat we are.