As I read stories others had written about their situations with Cushing’s Disease, I laughed, had numerous “me too” moments, and wanted to cry with you. Now I want to share my story, with the hope that it will encourage others and just maybe help someone get a correct diagnosis quicker than I did and get on the road to feeling better.
I remember working a warehouse sale for Kershaw Knives in Portland, OR, with my husband early Dec. 2006 and having significant swelling in my lower legs, to the point that at the end of each day I could barely walk and was absolutely miserable. Boy how I wanted to be at home. After numerous visits to my internist, he finally sent me to an endocrinologist who said I had Insulin Resistance Syndrome and put me on various medications. During several follow-up visits the doctor brushed off my concern about the swelling and kept telling me that lots of people have it, and basically I just had to learn to live with it and try wearing compression socks. I switched to a diet for Diabetics. I started noticing a real increase in my weight and I went up from a size 8 to a size 12, AND I was on Weight Watchers. The hair everywhere on my body, but my face, fell out and stopped growing. There was no distinction between my neck and my shoulders, I noticed a hump on my back, my blood pressure went up, my level of cholesterol went up, my disposition stunk, I didn’t want to be around anyone, my vision became blurred, my breasts got bigger, I had all kinds of little brown places especially on my midriff, if I incurred a wound it would not heal, it seemed like I could look at something wrong and a blood spot would appear under my skin, and who knows what else. I was ready to quit work and become a recluse.
I don’t even remember the various types of specialists my internist sent me to trying to figure out what was wrong. Both of us knew, without a doubt, that something was not right. I do remember seeing a cardiologist and going through a battery of tests. Who knows how many times I had blood work done and I had to do numerous urine tests. After the majority of the specialists could not find the culprit of all of my issues, the internist, Dr. Randy Cronic, Duluth, GA, decided to send me to Dr. David Arkin, an excellent endocrinologist. All this time I had been reading on-line trying to self diagnose because I was tired of feeling so horrible and I wanted to do whatever I had too to get better. By now I had decided that I had Cushing’s Disease and mentioned that to Dr. Cronic. Of course, Dr. Arkin told me that he would have to conduct more blood work and have me do urine tests. As he got closer to diagnosing me, he informed me that I would need to have my blood work drawn at Midnight. I thought he had lost it. He explained that your level of cortisol is the lowest at Midnight, and that would be the final test needed to say whether or not I had Cushing’s Disease. A normal cortisol level at the bewitching hour is anywhere between 50 & 200. Well, my cortisol level was 1,200! The MRI’s and CT scans confirmed that my issue was on the pituitary gland.
Late Nov/early Dec. 2007, Dr. Arkin told me that the only way to help me was to undergo brain surgery to remove the tumors. I told him that I would be on vacation the last two weeks of the year and would like to have the surgery done during that time. He called Dr. Nelson Oyesiku at Emory Hospital in Atlanta, who is Professor & Vice Chairman Director, Residency Program Dept. of Neurosurgery, told him what was going on, and said that he wanted him to see me. I was seen right away. Dr. Oyesiku travels all over the world to talk about Cushing’s Disease, so it is really hard to get into see him. He is the best neurosurgeon in the state when it comes to dealing with something like this. While we were in Dr. Oyesiku’s office, he asked me when I wanted to have the surgery, so I told him. He got on the phone to the ENT specialist there and asked if he was available to do my surgery at 7:30 a.m. on December 21st. With God’s help, everything fell into place and my surgery was scheduled. Going in we knew that they would go in through my nose which would make things go smoother especially since I’ve had sinus surgery; I would be in the hospital until after Christmas starting off in ICU then I would move to a regular room; the surgery should last 2.5 hours, and that it would probably take up to two years for me to return to normal, whatever that was.
My mom lives with us and has an incurable lung disease that is in remission. We knew that it would not be good for her to go sit in a hospital all day and I also knew that she would be worried all day till she heard from my husband, Larry. We left bright & early for the 30 min. drive to Emory. We kept sitting and sitting, until finally someone came out to let us know that his first surgery was running late. My turn finally arrived, so I told Larry that I loved him and kissed him goodbye. To be honest with you, I was at total peace. I knew that God would take care of me and that whatever happened, He was in control.
My surgery ended up taking 5.5 hours and all that Larry knew by looking at the status board was that I was still in surgery. From what I’ve been told, I had all kinds of tubes and wires coming out of me, including a catheter and a drain in my spine to keep the fluid off of my brain. Instead of being put in ICU, I was initially put in a step-down room from ICU and that’s where I stayed. The good news is that I got to go home on Christmas Eve. I was at home and out-of-work for two months. The recovery was not easy, especially the couple of days I had to do without my meds so that my cortisol level could be checked. I felt like a drug addict trying to get clean! There were so many things I could not do and I definitely did not feel like talking with anyone or seeing anyone.
I am still recovering from the surgery, almost two years later. I do feel better, Praise the Lord. In January I had to start back on Weight Watchers to get the remaining 20+ pounds off. I still have some of the extra flab in my middle section that I’m not happy about. Some other health issues I have prevent me from exercising and working up a sweat, so I may have to live with the “extra” in the mid section. I have finally gotten back into size 8 clothes and the hair on my head has thickened back up and is healthy again. While the size of my breasts went down some, my husband is pleased with the larger size. I see the endocrinologist every 3 – 4 months for a check-up and blood work, and every now and then I have to collect urine for him to check. Dr. Arkin said that everything is looking good so far. He had thought that I would be able to go off of the cortisol all together, but when I reduced the daily dosage to 10mg/day my family and I noticed a big change in my disposition, so I had to go back to 15 mg/day. Fortunately, that dosage is small enough that I can stay on it forever, if need be. I had a hysterectomy years ago and went through menopause a few years ago, but the surgery seems to have messed with that too, so I am on a very low dosage of estradoil. It probably won’t surprise you to read that I am one of two patients of Dr. Arkin’s with Cushing Disease, but I am the one that had it full blown, so they were anxious to see what I looked like. The sad part is that some people come to see him wanting to have it. Why? They are nuts!
When I think about what all I’ve gone through, at times I want to sit down and cry because now, after-the-fact, the reality scares me. I do have to keep reminding myself how far I’ve come and how lucky I am. I keep a before surgery picture with me to help me get off the pity potty. I do wish that I had connected with this support group when I was going through the thrust of Cushing’s Disease. I am so excited that I have found it now! I really want to help make others aware of this nasty and cruel disease, and help others deal with it. To me, it is as bad as cancer. It too can kill you if left untreated. Don’t lose faith!
Newsletter: Summer, 2009