Almost 3 months post-op October 6, 2012

Time flies. Or I’m really tired most days and don’t have the energy to post an update. Maybe both?

So September was mostly uneventful after the August adrenal crisis and subsequent wean to normal doses. I have had a fair amount of trouble getting my florinef dose correct, as well as the timing of the doses. It was compounded by a complete inability of the lab people to handle my blood correctly, making the test results completely meaningless, and of course, a late summer heat wave. Everything is more complicated now.

So last week, in preparation for flu season, I went to my PCP to get a flu shot (and a pertussis vaccine as well, since that’s making a comeback, and I’m not interested in having whooping cough again). I made it through the day of the shots ok, but the next morning I was in trouble. I woke up nauseous and weak, and ending up calling in sick to work. By mid-day, the nausea was far worse, and I was clearly in AI. I ended up taking a lot of extra hydro that day, but did avoid the ER because I never did start vomiting. The pain was bad, and I had a few moments where I thought I was going to puke, but I did not, and once the nausea subsided (thank you large doses of hydro), I was able to take some pain meds and felt better.

I started back at Weight Watchers a few weeks ago as well. I really benefit from the structure and accountability of Weight Watchers. Also, I appreciate the flexibility of the plan – I can eat whatever I want, within my daily points allowance. So the first week, I lost 4 lbs and was super excited. Then the next week I was doing great before the flu shot-triggered AI, so despite barely eating anything that day, the extra steroids took their toll on me, and I was up 2.8 lbs last weekend. But I knew it was temporary, and this week I was down 6.8 pounds, so 8 lbs total in 3 weeks. Pretty stoked about that, especially since I am limited at the gym right now, just by a lack of endurance and strength. Mostly I swim, and walk around the track, nothing really intense yet, because I don’t want to risk AI again.

So I guess that’s the update. I’m sure there will be plenty more adventures in life without adrenals to come, but for now, I’m trying to lead a relatively normal life.

Life Without Earl: My First Adrenal Crisis August 20, 2012

Well it was bound to happen eventually.  I count myself lucky I knew what was going on and was able to get to the ER before it could get worse.

So I went to Wichita for the weekend to see my friends (my lovely parents were driving up to see family, so I tagged along for a ride).  I had a decent week leading up to the weekend.  I didn’t work a full week, and even went home early one day because I was feeling pretty rotten.  I feel like I’ve been struggling a lot with salt intake, florinef dose and hot weather, as I detailed in my last post.  But I didn’t think riding in the back seat with my dogs was stressful, and I didn’t think spending a low key weekend with my friends would be stressful.  But maybe it was all cumulative, staying out too late on Wednesday, traveling.  Even good stress (like having a good time) is still stress.

So Saturday afternoon I felt a little crummy.  I took a little extra hydro when I started to feel that way, and some extra florinef.  I think I added some zofran for nausea.  All of this around 5 or 5:30.  I didn’t get any worse.  I ate dinner, felt unchanged, which is to say “no worse, but no better.”  We went home and watched a movie.  I took some more hydro during the movie, because my stomach was really hurting and the nausea was getting worse.

Around 9, the movie ended and I went and basically took up residence in the bathroom, because the nausea was so bad.  It took another 30 minutes before I actually started puking.  I actually took 20 mg of hydro immediately before the puking began, in an attempt to get it to go away all together.  So now we’re in a cycle: take hydro, puke, take zofran.  Lather, rinse, repeat.  In between cycles I tried to get fluids in me.  After the second one, I put 40 mg hydro under my tongue, and stopped puking for a while, but did not feel better.  I was very concerned about getting dehydrated at this point, and after some consultation with my friends and Dad, I opted for the ER about 10:30 pm.

I actually puked twice more before the night was over, once driving to the ER, and once in the ER before they could get all my meds in me.  That’s a new personal record for vomiting.  Yay records.

Once I got to the ER, they took great care of me.  I told them I was having an adrenal crisis, presented my letter explaining what I needed, and they took me right back and hooked me up to all the monitors while they did my intake.  It still took about 30 minutes to get me an IV and get the drugs in me, so that 40 I put under my tongue really probably made a difference.  I ended up getting 200 mg solu-cortef over the course of a  couple of hours, 2 bags of fluids, dilaudid for pain and zofran for nausea.  The ER doc checked for infection, but could not find one, so he thought I just had “overdrawn the cortisol bank” as my friend Robin would say.  They discharged me around 2:30 am.

So that was a fun Saturday night.  Obviously a huge thank you to the good people of Wesley Medical Center in Wichita, Kan. for doing right by me, but also to my best friend TL for driving me to the ER and sticking it out with me, to Elizabeth for holding my hair and giving me a washcloth when I was puking in TL’s bathroom, and to my dad, for being a dad on Saturday night.  We’ve spent far too much time in hospitals lately.

Feeling much better today.  I did ok on the drive home yesterday.  I snoozed in the car, and slept like the dead last night. I went back to work today, although I did not make it a full day.  Probably have to take it easy most of this week.  The ER doc said I should be on 50 mg a day for 2-3 days (Sun, Mon, maybe Tues) and then back to my daily 25 mg.  Might take me a few days to get back to 25 mg from 50 mg, so I expect a tougher week than usual.

Cushing’s Awareness Challenge – Day 12 April 12, 2012

I think the keto is really working.  I have felt so run down for the last couple of days, even getting plenty of sleep.  It did not dawn on me until this morning that maybe the keto is really suppressing my cortisol production and I need to take more hydro.  I’ve been taking 5 mg around 8 am, and usually another 2.5 mg in early afternoon.  But the last several afternoons have been absolutely brutal, I have repeatedly felt like I was barely going to make it through the day I was so tired.

So today I added another 2.5 mg to my afternoon dose and it was like a whole new world.  I was functional all afternoon and able to work as late as I planned.  Came home, made some dinner.  I feel like a different person.

All I have to say is I’m so ready to be done with Cushing’s in all its forms.  So over this disease.