My name is Kelly. I am a 34 year old stay at home mom to a fabulous 3 1/2 year old named Ryan. I have been married for 13 years to my college sweetheart.
My Cushing's ride has been an absolute nightmare. It all began inthe summer of 2010 when I noticed I had gained 10 lbs out of nowhere. A month later I found out I was pregnant. We were thrilled to be giving Ryan a sibling! I noticed from the beginning of the pregnancy that things weren't right. I was RAVENOUS and couldn't stay full for more than an hour.
By Thanksgiving 2010 I had gained over 20 lbs. That much inthe first trimester just wasn't right. My OB didnt seem concerned. My BP was fine at this time. I started swelling in my face and retaining fluid at 5 months into the pregnancy. It was very unusual swelling and the edema was terrible. I was so tired, fatigued, and unusually weak.
By January 2011, I went to the hospital with purple striae everywhere, tons of edema, a racing heart, anxiety, and just about thought I was going crazy. I was paranoid over everything and hadn't slept since I found out I was pregnant. They ran a 24 hour urine to check for preeclampsia, but not cortisol. They had every doctor inthe place looking at me. I was admitted with low potassium, but all the doctors said nothing else was wrong with me. The baby was fine. He was doing well. We named him Patrick while we were in the hospital. They kept giving me potassium supplements and sent me on my way after a week even though my BP was through the roof. It was 167/111 when I got there. They "just couldn't find anything wrong with me".
6 week later, I was rushed to the hospital in an ambulance only to be diagnosed with congestive heart failure. All the doctors believe it is Peripartum Cardiomyopathy which is caused by pregnancy. I believe now that Cushing's was the entire cause.
I spent 2 days in cardiac ICU and then was moved to a regular room. I was on oxygen for 2 weeks and then was able to go home on 16 pills a day. I spent the next week seeing every doctor known to man.
Then my nightmare really began. On March 14, I went for a high risk OB appt and ultrasound. My mother was with me thank God because Patrick's heart had stopped. I was induced that evening and Patrick was stillborn on March 15. He was born at 9:57 PM and was 3 lbs. & 16 in. We had his funeral on March 23, a day before my birthday.
I now was put on all the strong heart meds and thought I was on my way to getting well from the heart failure. All through this past summer I felt like crap every day. I still do and am even worse now. I figured this was all part of the recovery process. I never thought anything else was wrong with me.
My symptoms have gotten so much worse all of a sudden within the past month. I found a GREAT endocrinologist and called crying and begging for an appt. She is a brand new doctor and took one look at me and said Cushing's. I said WHAT?? I had never heard of it. I have done the 24 hour urine and the lab actually tested it twice because they couldnt believe my cortisol was so high...2107.
I have a tumor on my right adrenal gland. I had a CT scan in Feb. and April where it showed I had it, but no one looked into it any further. Let me tell you how MAD I am. I have done tons of research and they could've removed it while I was pregnant and Patrick could possible be here with me now. The right doctors just didn't catch it and I am devastated. This has stolen so much from me.
I am scheduled for surgery on Nov. 23 and can't wait. I know it will be a long road to recovery, but I am so ready to begin the journey. Only a few more days.
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