Two years… July 11, 2014

It has been two years and two days since my bilateral adrenalectomy. I cannot believe how much different my life is now. There is so much I want to say, and yet, I almost feel like words aren’t enough.

This morning I weighed 141.2 lbs, down from right around 200 this time two years ago. I don’t think I ever actually hit 200, but got terrifyingly close. I haven’t weighed so little since 2008? 2007? I feel like I was around 150 when I ran a marathon, fighting so hard to get that weight down and not succeeding. I didn’t know how serious it was then, just that something wasn’t normal. I’ve got another 15-20 lbs to go, but I feel confident I can get there. A year ago, I’m not sure I would’ve said that.

Since last year, my life, to say nothing of my health, has changed so much. I bought a house, I reclaimed my dog from her grandparents, I increased my gym schedule to five days a week most of the time, I started swing dancing, I gained a social life, new friends, and honest to god, a new lease on life. I really feel younger (but wiser for what I’ve been through), and healthier than I’ve felt in years.

I’m not naive, I know I have a serious health condition now, but it is well managed. I take care of myself, and hope that my body will continue to cooperate. I know I’m lucky to have not suffered major complications from Cushing’s and I hope I will continue to be lucky as I go about my life with no adrenals.

Pictures really tell the story here, so I’m going to upload a few, and link my readers to a photo journal I put together. But I owe all of this good health to my incredible team of doctors. I know that they saved my life. Doctors Friedman, McCutcheon and Phillips are truly heroes to me and other members of the Cushing’s community.

And I owe a part of it to the amazing instructors and trainers I’ve met at the Y and dancing, and the friends I’ve made who’ve motivated me to show up week after week. Giving me something to work for and someone to inspire me has made a huge difference, so a big shoutout to Robbie, Shelly, Brian and Destri from the Y. A virtual and real life hug to Jamie for dragging my ass to swing dancing last fall, and to Elaine, Jerry and Kathy for making the studio so much fun I can’t stay away.

I know I don’t post much here anymore, as I felt like without health problems, this blog sort of lost its purpose. I hope if anyone comes across it in a few years, they will still find my story helpful.

In order, those pictures are before May 2010 right before diagnosis, February 2012 right around re diagnosis, Spring 2013, Fall 2005 before Cushing’s and this week.

My full photo journal is here: Goodbye Earl: My Cushing’s Journey

One year later July 10, 2013

This won’t be long, as I’m heading to bed. But since it is my one year anniversary of being Cushing’s free, I wanted to write something.

Since you read my post last week, you know how well I’m doing. This week, I took a new boot camp class on Monday, a spin class on Tuesday and tomorrow I’m back to my regular Tuesday/Thursday class. Oh and I went for a run on Saturday. Talk about things I never would’ve accomplished a year ago.

I really am terrible at taking pictures, especially since I don’t have a full length mirror in my apartment. But I wear regular size clothes now, and some of those are starting to be too big. I will try to get some before and after pics up soon.

I think I’m doing ok on the new dosing, although I’m not completely convinced by the lower afternoon dose. My Monday and Tuesday workouts were really, really tough and I felt like they shouldn’t have been quite that hard. But it is also hot out and that sucks the life out of me, inside and out.

So, happy one year BLA-nniversary to me, and here’s to many more years of being Cushing’s free (all the years, really, not many, all my future years)!

Almost one year post-op July 3, 2013

Had an appointment with the good doctor tonight. Can’t believe it has been almost a year since my BLA. Time really does fly.

Anyhow, my most recent labs are back and suggest a small wean to a lower cortef dose are in order. The lab tried really hard to screw this one up, telling the specialty lab running the test it was a random sample not a 24 hour. Fortunately, Dr. F could do the math (and so could a wonderful friend of mine) so I now know my dose is a bit too high. I’m a little surprised, actually, since I’ve felt pretty good since going to 20 mg. I’ve lost weight, although I guess not without work. Theoretically at the right dose, I should lose faster. I will believe that when I see it.

On the weight loss subject, I have lost about 7 or 8 pounds in the last two months. I joined the 60 Day Challenge class at the Y, twice a week, and went to Weight Watchers regularly. I tried to pick up at least one additional workout a week, preferably two these last eight weeks, but did not always succeed. Still happy with the results.

I am still finding my hair is coming out in handfuls. Dr says that is likely due to low ferritin (anemic) not thyroid, since my thyroid labs look ok. I was hoping he’d tweak my T4 drugs, but no. He thinks the ferritin is the likely culprit here. I was taking three ironsorbs a day, and my ferritin barely budged in the two months between checks. So now I’m trying a mega supplement the guy at Whole Foods recommended. It has 85 mg of iron in it (as opposed to 3-18mg pills I’m currently taking).

He also suggested I tweak my florinef dosing a bit, going to 1.5 pills on workout days, but just 1 on days I don’t workout. I guess we will see. This drug is most baffling. The lab can rarely handle my blood correctly for this one, so I have little confidence the results are helpful. This last time I got them to put it on ice immediately, and it still came back low, so I don’t even know anymore.

The addition of Armour to my daily meds has been probably the single biggest change. My energy levels have improved dramatically. I haven’t felt this good in months, maybe years. I rarely need a nap now. My PMS symptoms improved like a zillion percent too. That’s some good stuff, and so cheap. Can’t believe the difference it makes.

So one year out maybe I haven’t seen as many changes as I hoped as quickly, but the changes I have seen are so good that I can’t complain. I definitely made the right choice getting my BLA. Life without adrenals has its share of challenges, but it sure as hell beats life with Cushing’s.

I never update anymore it seems…10 months post-op May 17, 2013

Somehow, I just got too busy or tired or felt like I didn’t have much to say, but I’m going to try to do better now. I swear. What “better” means remains to be seen. Monthly? Weekly? I will try for weekly.

I’m not going to try to tell to everything that happened in the last six or eight months, it would be dull. My life is significantly improved without those pesky adrenals, but it does have its challenges. For example, I spend a significant amount of time being nauseated for one reason or another, it seems. Most of winter I wasn’t taking enough salt or florinef, and especially once I got enough salt, it really helped with the nausea. Of course, now it is almost summer, so I’ve already doubled my salt intake and may have to increase it again as we get into the worst of the heat.

I’ve had a few adventures in AI, but no trips to the ER. That is a definite victory. I did not stress dose on Wednesday night during the tornado adventures we had here, and I paid for it yesterday. Achy and sore all day, by mid-afternoon I was in some pain. Came home and took a nap, didn’t eat dinner because I was so nauseous and in pain. I’m still really bad at stress dosing in situations like this. I’m afraid of taking too much steroid, even though I know that’s not really possible for a person in my situation. Regardless, I tried to nickel and dime this particular episode with 10 mg at like 6, and 10 mg at bedtime. It kept me from serious AI but it doesn’t actually make the mild stuff go away. The pain was preventing me from sleeping so I took a Percocet, and that started to nauseate me, and that’s when I took 20 mg. That combination seemed to do the trick after about an hour, and eventually I slept. Overall, I’m getting better at this, I rarely get to stage puking it seems (a big deal since I hate puking) and I’ve avoided the ER for like 9 months now.

I’m working out regularly and getting stronger. I joined a boot camp class/fitness challenge at the Y this month, and so far, I’m hanging in there. It’s hard, but it is hard for everyone. I do need a swig of Gatorade or something after it usually, and I like to take a SmartWater to the class with me. Electrolytes matter.

The biggest “news” is really that while I haven’t lost much weight yet (hoping that changes with this class), my body is definitely shaped differently now. My Cushie belly is mostly deflated and gone, my hump is smaller. I wear regular sizes now, even if they aren’t the sizes I wore before Cushing’s. I’m really trying to spend the summer getting stronger and losing weight.

Ok so I promise to do better and update more. I really did mean to keep you all apprised of life after Cushing’s as much as I did with life with it.

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.

One Month Later… August 16, 2012

It’s been a little over a month since I left the hospital, and Cushing’s, behind and started the next chapter.  It’s been pretty good, only a couple rough patches, although I do feel like I’ve hit a wall right now.

So I lost a little weight right away, but that didn’t last and now I’m struggling to get the cocktail of drugs, salt tablets and fluid intake correct.  I’m pretty sure my local lab isn’t handling my blood correctly so my labs aren’t helping with the puzzle.  Case in point, I have had multiple occasions where I have symptoms of not enough florinef and taking extra makes me feel better.  But my labs show my florinef might be too high.  How can I have symptoms of not enough and my dose be too high?  Probably my samples aren’t being spun and frozen right away.  Ugh.  I had that set of labs redrawn last week, so I’m hoping those will show something more helpful.

This week I added salt tablets to the mix, because The Wizard said I should increase my salt intake.  Only way besides eating chips and salsa I knew of to do that was salt tablets.  Something about not having enough salt will make a BLA-er swell.  I’ve been pretty swollen lately.  Also, my heart rate has been elevated a lot (which is a symptom of not enough salt and not enough florinef).

As you can see, it’s all very confusing and complicated, and there is a steep learning curve.

In good news, LabCorp has finally entered the 21st century and I can now get my lab results online, without waiting for my doctor’s office to send them to me, or hoping they will fax them to me as requested on the test order.

Summer is still in full swing here in Texas, of course.  I’d really like to get some exercise, but not being able to go out in the heat means I’m limited right now.  Makes me feel like a caged animal.  On the other hand, most days I barely have any energy at the end of the day.  I haven’t managed to crack 40 hours a week at work yet.  I thought maybe I could come close this week, but two days in a row, I’ve left feeling completely wiped out at 8 hours or less, and I’m leaving early tomorrow.  Maybe next week!

Opportunity-Cushing’s Market Research August 2, 2012

People with Cushing’s syndrome (Cushing’s disease, ectopic Cushing’s, and adrenal Cushing’s) are invited to participate in market research to help inform and improve the patient resources available.

If you were diagnosed within the last 10 years and have not had a uni- or bi-lateral adrenalectomy, we invite you to join us. Those who are in remission, have cyclical Cushing’s, or were selected for previous Corcept market research are not eligible. Market research will take place on Saturday, September 8, 2012. A location will be chosen shortly. In addition to the opportunity to connect with other Cushing’s patients, participants will receive a $250 honorarium (payment) for their time.

If you are interested, please contact Clair Johnstone at cushing@compasshc.com or call 1

People with Cushing’s syndrome (Cushing’s disease, ectopic Cushing’s, and adrenal Cushing’s) are invited to participate in market research to help inform and improve the patient resources available.

 

If you were diagnosed within the last 10 years and have not had a uni- or bi-lateral adrenalectomy, we invite you to join us. Those who are in remission, have cyclical Cushing’s, or were selected for previous Corcept market research are not eligible. Market research will take place on Saturday, September 8, 2012. A location will be chosen shortly. In addition to the opportunity to connect with other Cushing’s patients, participants will receive a $250 honorarium (payment) for their time.

 

If you are interested, please contact Clair Johnstone at cushing@compasshc.com or call 1-800-856-6706 for more information. Thank you in advance!

-800-856-6706       for more information. Thank you in advance!

Life Without Earl, Day 10 July 20, 2012

I am home from California.  Well, home to my dad’s house.  I am going home to my place in a day or so.  

Spent the weekend recovering at Grandma’s house before we flew home on Tuesday.  Traveling was harder than I expected, since I felt like I was doing ok until that day.  But traveling is stressful, and exhausting, and I ended up needing one of the heavy duty pain pills to get through that day.  I did not need any extra hydro (but I was still on higher dose than the docs originally wanted me on at that point, 40 mg v. 25 mg), and I did not get sick, so all in all, it was a successful day.

I figure I’m still several months away from having the perfect dosing schedule and amounts figured out, but so far I’m doing ok.  I did wean from 40-30 as soon as I got home.  Today is the third day on 30, and the hardest yet.  I woke up tired and nauseated, went back to sleep after I took my meds, felt ok for the middle of the day before succumbing to another nap.  Weaning is hard. I’m supposed to go back to work next week, at least part time.  I think I can do it.  I’m sure I’ll have bad days, but I’m bored at home and ready to be not at home.

Everything else seems to be healing well.  My incision sites look good.  I can’t sleep on my side yet (boo), but the pain is almost gone now for everything else.  A little tightness and achiness, but it’s improved a lot in the past 48 hours.  It is really hot here at home, and while I knew it would be, I underestimated how much harder doing anything is in 100 degree weather.  Yesterday I tried to run two errands and completely wore myself out.  Same for walking the  dogs last night in 92 degree heat.  I only went a few blocks but jeez, I was winded and exhausted afterwards.  It’s a lot cooler tonight, thanks to a little thunderstorm, so tonight should be easier.

That’s all for now.  I’m sure there will be bumps in the road and the occasional setback, but so far, life without Earl is pretty good!

Life without Earl…Day 4 July 14, 2012

Sorry to not have anything to write sooner.  Recovery not exactly easy from this one.

It’s Saturday and Earl’s evil partners in crime, my adrenal glands, came out on Tuesday.  At some point I may be able to tell you what happened in surgery.  Right now I don’t really understand it myself, other than the left one was complicated.  Something about my kidney and veins and arteries.  I don’t know.

Here is what I can tell you.  The hospital was great.  The staff was fantastic.  My surgeon, Dr. P, and his fellow, Dr. G were amazing.  My pain was managed well, and everyone took great care of me.  Wednesday I was on a “clear liquids” diet which meant water and juice and broth.  Thursday before I was discharged I graduated to real food, although my appetite comes and goes with my pain, my steroids and everything else.

So now begins the hard part, getting weaned to a replacement dose of steroids.  The first two days in the hospital, I felt like my pain was well managed and it did not even occur to me that was, at least in part, due to the very high doses of steroid I was on while in the hospital.  They send me home on a much lower dose, and I’m not close to being there yet.  Doctors wanted me on 30 mg a day at this point, but I’ve yet to make it to 40.  Hoping today is that day, after 50 on Thursday and 60 on Friday (driving to grandparents involved nausea and extra meds).

I am resting/recovering at the grandparents’ right now.  We will go back to LA to follow up with Dr. P on Monday, before going home on Tuesday.  I’m pretty ready to go home at this point.  I miss my pets.  When I’m sick, all I want to do is cuddle up with one or two or all of them and that’s where I’m at right now.  Couple more days…