Warning. Some content on this page may be clinically graphic. This page is not necessarily intended to offer any medical advice regarding Cushing's Disease or recovery, only to share my journey and to enlighten the community that there are people that you may see every day who struggle with rare and other diseases and that everyone should be looked at unjudged. We are all broken in some way, and we are all in this together.
Cushing's Syndrome and Disease Links
University of Washington Medicine
UCLA Health
Urology Care Foundation
CSRF - Cushing's Support & Research Foundation
My journey through Cushing's Disease was a long but successful one so I offer this lengthy recount and hope that my experience can be of some help and hope to those that face Cushing's, or some other rare disease. Thank you to all my family, friends and co-workers for your patience and support to help me get through this disease.
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Where to begin. Towards the end of 2016, beginning of 2017, I was noticing that my forearms were becoming bruised very easily. Simple tasks such as reaching into the beer cooler at the grocery store, or just bumping into things, as we do, would cause instant blood bruises, and sometimes tearing of my skin. After a few months, and after researching it a bit on Google and not finding anything that I could self-diagnose, I got concerned enough that I made an appointment with my Primary Care Provider (PCP). Upon my visit, my PCP also thought that my symptoms were a bit unusual so she referred me to an oncologist. A battery of blood tests revealed that I had "thin skin". He got that part right. Also at this time, my weight and blood pressure had gone up some, but I had not really been on any meaningful exercise regime, but I also was not eating that much to warrant a weight gain. I was already on high blood pressure medicine for the past several years (makes sense later) so this was not a new development. It did seem, too, that my legs had gotten a bit weaker, but this fit into the general overall get-in-better-shape non-diagnosis.
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By the fall of 2017, things weren't improving at all. My strength and balance in my legs was getting worse. A flight of stairs would wind me. I was gaining some weight. I was kind of feeling "hopped up" all the time like I was perpetually over caffeinated. My sleeping was getting worse, and my family was noticing that I really didn't feel up to doing a lot of the things that I used to do. On my annual deer hunting trip, it was extremely difficult to do one of our easier hunts, on the way back to camp I continually had to rest. Again, I was blaming my fatigue on just being a bit out of shape. In the spring of 2018, I had had enough of feeling like I was on a slow wind-down, so I made another appointment with my PCP. This time she ordered a bunch more blood labs. One of them revealed that the level of cortisol in my blood was on the high end of the "normal" range. I let my Doc know during this conversation that back in 2011 and 2012 I had CT scans done of my abdomen region for another issue and they showed a small adenoma (growth) on my left adrenal gland that had not changed between the two scans and was probably benign. She was able to access those records from another hospital to help with her diagnosis. Thank you Dr. Jennifer Smith for the ability to diagnose my disease.
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So it was in July of 2018, while on vacation in Depot Bay, Oregon that I got a call from my PCP. She told me that with all the symptoms I had been having (including "Moon Face" - thank you namer of Cushing ailments (at least I never got the "Buffalo Hump", I think)), and with the level of cortisol in my blood that she believed that I had Cushing's Syndrome. When I returned home, my next lab test would be a 24 hour urine collection. So, I took a day off work (hey man you have to keep this stuff refrigerated!), and I became friends with my big orange pee jug. We even spent time together in the middle of the night. In the garage. The test came back with my cortisol reading 5X the normal amount! Another CT scan showed that my formerly benign adenoma had grown 3X in size since 2012. This confirmed to my PCP that I probably had Cushing's, "disease" not "syndrome". The difference being disease is typically due to a tumor on the pituitary or an adrenal gland(s), and syndrome can be caused from taking too high of a level of steroids.
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So this is the deal with crows. It was on a walk near the beach when I spotted this sort of lonely fellow up in a scraggly tree (shown) and it kind of summed up how I was feeling. Crows became my "Where's Waldo-ish" mascot in my Facebook Westerman's Week posts. I guess I could relate to the solitary nature and self- sufficiency of these misunderstood black birds. Plus they are smart, and I have always liked them. Now you know.
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So my PCP referred me to an Endocrinologist. Cushing's is a rare disease, affecting about 5-10 in 1,000,000 so she sent me to a specialist. Thus began my relationship with the University of Washington Medicine. They are a very busy organization, so I couldn't get in for four months, not until November of 2018. That was a long time to wait. I got on a waiting list to hopefully get in earlier, and I was able to get into my first appointment after receiving a phone call the night before. I only had about an hour to decide. Yes! I drove over to Seattle first thing the next morning, which was made more difficult as I was not expecting to do this and I had had a few glasses of vino the evening before. Hey, I was not in a good place! My Endocrinologist (Endo) was great, and after reviewing my records and examining me, she agreed with my PCP's diagnosis that I indeed had Cushing's Disease, so she referred me to a surgeon.
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Back to Seattle a week later. This time my appointment was at the SCCA. Seattle Cancer Care Alliance. It seems as though, if you get cancer (I didn't) in Washington State, this is where you go. My surgeon, with my permission, decided that the best course of action in her opinion was to remove my left adrenal gland in its entirety, through my back, laporoscopically. Whatever you say, Doc. Keeping it 100! was my new mantra. That round "smoke bomb" object in my scan was my adrenal gland and attached adenoma. My energy level was dropping. These were long days. I was tired of being sick.
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My surgery was scheduled for December 17th, but before they would do it, I had to go back to Seattle and take a physical to see if I was up for it. The Uber driver dropped me off in the center of campus, so after asking directions to the first person that looked like they were over 40, I had a fairly substantial hike to the Surgery Center. I have a history of arrhythmia, and this was a concern to the doctors. But I passed! Probably not my much as my blood pressure was sky-high during that appointment. To my credit, I was able to hike up the four floors in the surgery center without getting too winded. Yes, this was one of the tests. By this time, to make it through the days, I had to modify my work schedule to leave a few hours early each day to come home for a "country nap". I also resigned from my eldership position at KFPC as my anxiety and energy levels were getting the best of me. I was ready to fix this thing.
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So How am I doing? Not so good. I have gained about 20 more pounds, mostly in my torso. My pants didn't fit. I got bigger pants. And suspenders. Fat deposits under my arm pits and at the base of my neck. My blood pressure has risen. I have lost muscle mass and strength, especially in my legs and arms. I have edema in my legs. My ears are constantly ringing. I am exhausted. I can't sleep. I get irritated easy, SO I HEAR! I am anxious. My memory has been affected. I still bruise easy. My balance is shaky. I am staying up too late. I could probably drink less, but I feel like garbage all the time anyway. I really don't want to do anything. I look like a toad. I'm pretty screwed up. Libido not so good. And yes, sigh, I drank five Shasta Club Sodas one night.
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And so, this is where Glandalf come in. I named my left adrenal gland this because it is shaped quite similarly to Gandalf's hat in the Lord of the Rings trilogy. My doctors got a kick out of the moniker as well. As you can see from the diagram, we have two adrenal glands, each of them located atop of a kidney. Perhaps this redundancy will help me down the road. Typically, one will become dormant if the other goes spastic with it's hormonal secretions, most notably hydrocortisone. This happened to me. Time will tell if we can jump start my "extra" adrenal gland.
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Let's do this. I was ready to get this over with. My family joined me in Seattle for the big day. Luckily, Snoqualmie Pass was in good condition. We stayed in a hotel nearby and the kids showed up late, coming in on their plane. They all had breakfast before my surgery, the surgery recipient (me) had to fast. So, everything went well during the surgery, so I was told. The surgery took over 5 hours, and the the family spent this part of their vigil, where else, at the PUB! Doctor's orders sort of, to bug out. Apologies to those in the hospital room who had to endure my sophomoric humor when I arrived at my room after my surgery. It was the anesthesia!
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Everyone, top to bottom, at the UW Medical Center was great. A special thanks to my principal nurse K. I highly recommend the place, but I would avoid it if possible #:^),. The food was quite good. I even ordered pad Thai! My family's "vigil" was made complete with a trip to Pike Street Market, a fancy lunch, a visit from my sister and brother in law (bearing Christmas gifts for the kids), and some sort of food poisoning from some suspect raw oysters from the elegant restaurant they visited while I was recuperating. Apologies to the UW Medical Center's custodial staff. After two days I was discharged and Lynn drove me home. To make it interesting, the Subaru needed a quart of oil on the way home (oil light came on). For some reason, during the first night home, I felt like I had gotten shot several times, not from the pain, but from more of a psychological thing (having several holes being patched up, I think).
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A return visit to both my surgeon and Endocrinologist three weeks post-surgery went well. By now, Lynn and I have the car-plane-train-bus-bus-train-plane-car thing down. Hat's off to UW Medicine for the free transportation around their expansive medical campus. I'm still quite week, achy and sore at this point, but my arm bruising went away immediately after surgery! It did feel good to be on the post-surgery recovery side of things.
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I was scheduled for my first cosyntropin stimulation test at the end of February, 2019. This test helps determine if your adrenal gland(s) are functioning. You give blood, get a shot, then give blood an hour later. My gland was not yet working, so I was to remain on my oral hydrocortisone. On this note, tapering from my post-surgery dose of 50 mgs/day, to my eventual maintenance dose of 10mgs was very difficult, as too low of levels lead to fatigue and achiness, but ideally you need to take the lowest level you can tolerate as your remaining adrenal gland needs to get the message to WAKE UP! This weaning process took several months. On the way back from Seattle, we encountered fog in Pasco, and had to return to Seattle for the night. First world problem, staying at the Hilton and enjoying a nice meal in the bar. I bought a $12 deodorant stick (Axe-good!) from the hotel gift shoppe and applied it in the TSA line at Sea-Tac Airport as we were on a tight schedule the next morning. TMI!
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Yet another trip to Seattle in May for a check-up with my Endo, and another cosyntropin stimulation test (not successful). I've included some random pictures showing my recovery. I shaved off my "as long as I'm sick, I may as well look sick beard". I am losing weight at a pretty good clip, almost 30 pounds by the end of June. I was a little worried that I may not reverse the process, but these worries were eventually alleviated. Whew? My left side is still a little sore, and a little poochy as my surgeon predicited, due to the proximity of a nerve during the surgery. This would gradually go away.
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Thankfully, my third cosyntropin stimulation test could be performed locally. My remaining adrenal gland has not yet woken up, but life on my 10mgs of hydrocortisone is sustainable. I am feeling zestier, and less fatigued. We had a busy year traveling. The strength in my legs and balance are improving slowly. I have another test in December, let's hope that adrenal gland #2 wakes up.
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More pics from the summer and fall of 2019. As you can see, I am feeling AND looking much better. I am thankful and grateful for the successful diagnosis, treatment, support and prayers. Keeping it 100!
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December 2019. After forgetting to go to my scheduled-six-months-ago cosyntropin stimulation test, as it snuck up on me because I forgot to put the appointment into my phone, or Outlook calendar. I rescheduled the procedure, and had it done a week later. Memory loss, people! (What a flake.). Trios got me back some by not finding my appointment in the computer, and taking forever to get my lab order through. The phlebotomist didn't have the best luck finding my vein either. But by this time, I am used to getting stuck. Two and a half hours later, I was done. The results should be in in a bit. Wish me luck!
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So this is it. Our 8th trip to Seattle in 14 months. I decided not to ferret out the results of my December cosyntropin stimulation test, as I knew Dr. Tylee's Office had them, and I wanted to be surprised. A wintery pass led to some delays, and this time we bumped across the UW campus, as we hadn't yet, and heck, I was physically up to it! And, I printed out a map. Old school, yes, for you twerp's out there, I know, the phone provides this. Not the same. Got a sandwich at the Trinity Market before the appointment de rigueur (Dr. Tylee recommendation). It felt strangely good to be back.
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The appointment with Dr. Tylee went great! My test results revealed that my baseline cortisol was normal, and my stimulated adrenal gland was about 75% functioning. Good enough to wean myself off my steroids over a two week period. I need to be careful of certain symptoms like dizzyness, but I almost couldn't have gotten better news. No followup appointments are needed! My surgeon, Dr. Zern moved her practice into the Roosevelt Building, and we were able to touch base with her. A perfect end to the University of Washinton Medicine experience.
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So long, Old Friend
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Cushing's recovery update. I saw a new doctor in town, 7/2020, as my new insurance would not cover the hospital where I was getting my cosyntropin tests at. So, instead of that test, his office drew blood in the morning, and afternoon. The Doctor said my bloodwork was "normal"! So, I'll get it tested every six months for a while, or if I don't feel well. As I haven't had any hydrocortisone since January 2020, my body has seemed to figure it out, and hopefully, I won't have any more issues with Cushing's Disease!
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Update - Super long & frustrating lab wait, summer of 2021, results revealed that my morning cortisol reading was OK! Meaning that my remaining adrenal gland is functioning for the both of them.
In closing, if you are battling Cushing's Disease or some other disease, get the right help, have some faith and perseverance, and you can beat it! I did.
In closing, if you are battling Cushing's Disease or some other disease, get the right help, have some faith and perseverance, and you can beat it! I did.