And It's About Time There Was Some Support For Cushing's!
I want to thank you for the support and the opportunity to share Jeff's story. I am his sister (Tammy) and I will be helping Jeff with this support network since he is blind. Here it goes------------
Jeff is my 32 year old brother who has had a horrific past year!! In 1998 he got a new job at a food processing plant. He was married, though not happily, and living life as any other young man. He began having back pain about 4 months into his new job and simply contributed it to the new physical work. He also started gaining weight, but again contributed it to the swing shift at work since he couldn't eat healthy meals. He also was depressed and moody, which he related to his poor marriage. It seemed as though every symptom he had, could be contributed to something other than a "real illness".
Finally, in March of 1999 my mother and I started hounding Jeff to go to the doctors because he looked puffy. He, and his wife at the time, just got irritated with us and responded defensively with, "maybe I'm just getting fat". (His wife was a rather large woman). He discounted our advice and waited for several months before going to the doctors. Jeff was very good at minimizing his health problems, thus the doctors never quite got all the info needed to accurately follow-up. His blood pressure was a bit high, he bruised very easily, he was about 170 pounds and is only 5'5. Interestingly, he had passed a kidney stone almost a year earlier.
Jeff's wife left him in July of 1999, so he was starting to get his life back in order. He was working on losing weight and was even feeling a bit less depressed. However, he still ached all over, looked very puffy, bruised easily, had high blood pressure, and was over all not well.
In December of 1999 he went to his PCP for a complete physical. It was during that visit that his MD became alarmed with a varicose vein in his left testicle. He was sent to a specialist for a CAT scan, which identified a very large mass near his liver and right kidney. Though we knew there was a tumor, nobody was sure what type and it's exact location. In the mean time, I was scouring medical books and talking to every doctor I could (I work at a local hospital in CCU and the ER). I stumbled upon Cushing's and immediately realized that Jeff had most symptoms, but on a lesser degree. I shared my exciting discovery with the endocrinologist Jeff was referred to see. He was very adamant that Jeff did not have Cushing's or symptoms relating to it. Needless to say he was immediately fired once Jeff's urine cortisol level came back at 1700!! It's true Jeff didn't have all the classic symptoms, but he certainly had most of them on a less extreme basis. Now, unfortunately, he pretty much has the whole syndrome.
Ultimately, Jeff was diagnosed with right adrenal cancer which invaded the inferior vena cava and the liver. He was sent to the University of Washington for a surgery consult. Surgery was decided upon, however, it would be a very difficult one and one that he possibly would not survive. Jeff went to surgery on Feb. 14, 2000. He was in surgery for 14 hours and did in fact nearly die. He gained 60lbs of fluid the night of the surgery. He was in very critical condition for several weeks, on a ventilator and basically non-responsive. The final outcome was that they felt they had gotten all of the 2lb tumor. The worst thing happened though when Jeff was taken off of the ventilator and was finally able to talk. He told us he was unable to see! Jeff was 100% blind as a result of the surgery. There are several theories about what caused the blindness, including a stroke on his optic nerve to not enough oxygen to the brain. Nonetheless, it has not changed--he only sees black which is rare to even blind people. Jeff left the hospital on March 21 and came to live with me and my family. He ended up back in the hospital April 3 and was discharged on April 10th with hospice care. Jeff was not expected to live--he was 114lbs when he came home.
Well, here we are a very complicated year later. Jeff is now 210lbs and experiencing all the devastating affects of Cushing's syndrome. He has lots of stretch marks, has breathing difficult as a result of the surgery and the extra weight, has a constrictive heart problem, and is blind to boot!! The good news is that we have a sick sense of humor at our house and tend to laugh an awful lot!!!! He tries his best to enjoy the life he has and to keep a positive attitude. Jeff is trying to reinvest in life, but has little energy. He has taken control of his medical decisions and sets many limits on the tests he will endure. He is still on 1.5mgs of dexamethasone--he developed a rash from the prednisone so could never switch over. He will hopefully be down to .5 in the next few months. The process is slow and miserable, which is comforting to know others truly understand. He also has to take lasix to help with the water retention.
Jeff, and I, look forward to giving and receiving support. Thank you for all you are doing.