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Chris' Story

My story is very similar to the others that you'll see here, with one notable exception; I'm a man! I find it interesting that the vast majority of letters here are from women. I understand that Cushing's is more common in women, but not to this extent. I suppose men just aren't as comfortable sharing their experiences and feelings about them.

Another difference for me is that I never really felt sick prior to my diagnosis. I gained about 20 pounds, got the "moon face", and spindly arms and legs, but didn't suffer from depression or fatigue to the point where it was noticeable. I was living overseas for the past few years and wasn't too impressed with the health care there. My thin skin and easy bruising was written off by the dermatologist as being caused by excessive exposure to the sun in my younger years. A psychiatrist said my memory loss was due to job-related stress. My easy cutting and bleeding were deemed to be "normal" for someone my age (47). When I broke a bone in my foot for no apparent reason, no-one thought much about it. However, the worst thing was my repeated injuries to my back, which were never x-rayed, and deemed to be muscular and referred for physiotherapy. While I wish I had been diagnosed sooner, I harbor no ill-will against these doctors, since Cushing's is so rare (especially adrenal tumor-related), that the average doctor would never see a case in their lifetime.

Upon returning to the US, my back was still bothering me, so I went to my GP who referred me to an ostoeopathic surgeon. He also discovered that my blood pressure was extremely high and referred me to a cardiologist. The bone guy x-rayed my back and found four fractured vertebrae, which was quite unusual for someone so young. This, linked with my foot fracture led him to order a CT-Scan and MRI of my back. Fortunately, he spotted something odd near my left kidney and sent me off to an endocrinologist with an interest in osteoporosis.

After spending only about five minutes with the endocrinologist, he told me "I know exactly what's wrong". He ordered a 24 hour urine test and confirmed his diagnosis, telling me I was a "classic" case of Cushing's Syndrome. He then referred me to a surgeon to schedule the removal of a 3cm adrenal tumor. At the surgeon's office a group of med students was given all of my history and symptoms, but the only one who could come up with the correct diagnosis was the one who already knew I had a hormonal problem. I felt like I was in an episode of Gray's Anatomy!

My laparoscopic surgery lasted about five hours and I was able to go home from the hospital after a four-day stay. I was feeling pretty good (considering I'd just had surgery). On day seven I developed severe chest pain and wound up back in the hospital for another four days with pleurisy and pneumonia. This is something you want to avoid if at all possible.

I stayed home from work for four weeks, feeling too fatigued to do much of anything, and often had an upset stomach. This was the hardest time for me, because I couldn't do the things I used to. Also, I've always loved to eat and enjoy good food, but during this period nothing sounded or tasted good, making eating a chore more than a pleasure. I lost almost 15 pounds in the first two weeks, but put back on about half of that.

In hindsight, it should have been obvious that I had Cushing's. I showed many of the classic symptoms, but they were explained away as part of getting older. I'm amazed now by how many people have told me they thought something was wrong with me but were afraid to ask for fear of being considered nosey. Many of them are old friends that only saw me once or twice a year, so the changes in my appearance didn't seem so gradual as it did for me and my wife. Several people told me they didn't recognize me at all.

It's now been three months since my surgery and I've cut my hydrocortisone dose back to 20 mg per day. I still feel tired most of the time and have a hard time psyching myself up to do things, but am confident that this will go away in time. I do have the stamina to walk and exercise with light weights on a daily basis. My doctor has advised me to refrain from jogging, biking, or golf for at least six months, as I'm still at a high risk for further bone fractures. This is the most frustrating thing for me, because in my pre-Cushing's days I had always been very active, with outdoor hobbies and exercise. My appetite comes and goes and my weight seems to have stabilized, with my belly slimming a little and arms and legs filling back out.

I think I was a little naive in believing that after my surgery everything would immediately return to normal. My recovery sounds like it has gone better than most, but still won't be an overnight affair. My remaining adrenal gland has yet to wake up and my bone density will probably take years to recover fully (if it does). Despite all that, I feel lucky to have been diagnosed after having Cushing's for around four years (estimated by looking back at old photos). My medical care in the US has been excellent and my family and friends have been very understanding and supportive through the whole thing.

I almost feel guilty that my diagnosis and treatment seem easy compared to some of the stories I've read. I wish the best for all of you who are still fighting for a proper diagnosis and an end to your symptoms.

I've learned a lot from this website as well as and have started trading emails with someone else who had the same procedure at about the same time. It's great being able to share progress and setbacks with someone who's in the same boat.

My wife and I enjoyed living overseas, but now realize that moving back here to get healthy again must be part of God's plan for us. We're thankful for the many problem-free years we've had together and look forward to many more now that we've almost put the Cushing's monster to rest.

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