Having been away from this blog for a while, I’ve been mulling over the idea of getting back into this, albeit with a slightly different focus. As I mentioned in my last post in June, I have had a series of health problems in the last two years that have taken a good deal of my time and energy. Part of the problem has been not knowing exactly what is wrong–I have not felt well, I’ve had extremely high blood pressure, and I’ve had a very difficult time losing weight (although I have to admit, I love to eat, so I can’t really pin that one on my disease).
All of this has been further complicated by the fact that my blood pressure shot up (180/120) in early September. I have a family history of hypertension, but this was really not the typical progression of “essential” (i.e., no known cause) hypertension. To complicate things, the blood pressure meds I was prescribed, some of them pretty heavy duty meds, weren’t working.
After three months of tests, my physicians found a rather larger tumor on my adrenal gland. Adrenal tumors are not overly rare, but tumors that start to act like glands (which is what my tumor is doing) are extremely rare. As it turns out, the symptoms I have been experiencing, collectively known as Cushing’s Syndrome, are caused by an
adrenal tumor that (in my case) pumps out massive amounts of cortisol (Hydrocortisone). As a result, I present as a person who is taking massive amounts of steroids–a fat, moon-shaped face, weight gain, extremely high blood pressure, fatigue, and a host of other symptoms.
From the time that I found out that the adrenal tumor was causing my problems, I was intent on having it removed. I had hoped to have surgery in early to mid-December, but my surgeon was booked until late January.
As I learned more about the surgery, however, what I had hoped would be a simple in-and-out procedure turned out to be a pretty major operation. Even if the procedure is performed laparoscopically, the location of the adrenal gland (right above my right kidney) makes it a deep and complicated procedure. The right kidney also lies closer to the vena cava, so the risk of hemorrhage is pretty high. If by chance the procedure cannot be done laproscopically (i.e., and would require a traditional surgical incision), then the entire procedure is even more dangerous. Still, I also realized that this tumor had to come out. There is no effective medical treatment for Cushings, and I also know I can’t afford to walk around with a blood pressure that makes me a stroke waiting to happen.
Nevertheless, the decision to have surgery has not been an easy one. As much as I am willing to undergo this procedure and accept the risks of death or disability, I am the mother of two, and like most mothers, don’t relish the thought of leaving my kids prematurely or being disabled to the point of not being able to take care of them. At the same time, I didn’t feel like I had a choice–with each week since the end of December my symptoms have gotten worse. In short, I feel lousy and it’s not going to get better. Surgery was scheduled for January 27.
Tuesday, January 27 was a snowy day here in Fairfax. My procedure was scheduled for 2 PM, so I didn’t have to arrive at the hospital until noon. Surgery schedules being what they are, my procedure was delayed, and I wasn’t taken back for my pre-op prep until 4:30. It had been a long day, I was dehydrated (and feeling it), tired, and feeling pretty nervous.
When they took my blood pressure and other vital signs, my blood pressure was 170/110. To me, this wasn’t a surprise. As part of my pre-op orientation, I was told to not take one of my two blood pressure meds, and I was nervous. It was also late afternoon, and one’s blood pressure does go up as the day progresses. Still, the anesthesiologist was having no part of this, despite the fact that the pre-op blood pressure is a symptom of Cushings, and I have to have surgery to cure the disease. He scolded me for not acknowledging that I am, in his words, “very ill.”
It’s not that I did not realize that I am very ill–in fact, I realize this every day. I just wanted to have surgery and get past this. But I had to wait.
In the intervening weeks, I was sent to an endocrinologist who increased my blood pressure meds. Surgery was rescheduled for Feb. 12. If my blood pressure continues to be high, I will be admitted to the hospital the day before surgery to regulate my
blood pressure. Now I just have to hold on and wait.