I was tired all the time
For almost two years I have not been feeling quite up to par. Par being not feeling how I thought I should feel with my new heart.
Of course the first thing we thought was my heart was being rejected by my body. Yet, I did not have the expected list of symptoms associated with rejection. After a couple of trips to Miami to be checked out by my transplant cardiologist, Dr. J, all he could say it that it is not my heart causing the tiredness. He knew I had trouble following the heart transplant with a very low testosterone level he suggested a more aggressive treatment.
The more aggressive testosterone of hormone replacement treatment did not improve my condition so Dr. J suggested I see an endocrinologist and get a full battery of test in an attempt to figure out what was causing my malaise. For any of you who have had to visit an endocrinologist you know what is going to happen next. You go to the phlebotomist’s office; you roll up your sleeve and wonder whether you have enough blood for all the tubes lined up on the table. I knew I had enough blood since I had already experienced the “crazy” phlebotomist’s at Jackson Memorial during my pre-transplant evaluation by giving them 24 tubes of blood.
The results are in
The results came in and revealed as suspected my testosterone was below a 100 when normal average levels are around 250-850. Dr. K suggested start testosterone injections instead of the cream or patches. Now, Sharon reluctantly injects me with what she describes as a “very long needle” every other week.
Dr. K started asking me some strange questions following the discussion about the injections. Have my hands or feet sizes grown recently? Is your wedding ring or hat tighter now than before? Have your teeth shown any signs of more space between them? Do you have more headaches that usual or has your sweat changed in anyway? 
After answering yes to a couple of the questions she told me she suspected I had acromegaly because of my answers and the surprising lab result of an unusually high level (2 ½ times normal) of growth hormone IGF-1 in my blood.
Acromegaly is disorder caused by a benign adenoma (tumor) on the pituitary gland that produces or rather over produces growth hormone IGF-1. It is a chronic condition that gets worse over time and the only definitive treatment is removal of the adenoma from the pituitary gland. This same condition if found in children is called giantism but after a child’s bone’s growth plates stop growing the diagnosis becomes acromegaly.
Dr. K’s greatest concerns were not the changes in my physical looks although it is a serious concern. Her biggest concern is that acromegaly has serious side effects such as the development of diabetes and causes serious cardiac problems. Knowing my history of the heart transplant made her gravely concerned as were Sharon and I. She ordered a MRI to discover whether there was a tumor in addition to the high level of IGF-1. The results showed I had a 3mm tumor.
To give you an idea of some of the physical changes that can occur because of acromegaly I added a couple of pictures. These represent men who have gone untreated for years. You can see the enlargement of the forehead, jaw and elongation of the face. Fortunately, I was diagnosed at an early stage and I do not show any obvious signs as do these men.
There and back again
Now, armed with the MRI showing an adenoma, a second opinion, and multiple labs showing high IGF-1 level we began a search for a pituitary surgeon 
who had extensive surgical experience and worked in a hospital with knowledge of organ transplants. Unfortunately, none were to be found at my transplant center, Jackson Memorial Hospital in Miami but, we found the next closest hospital to fulfill my requirements was Shands Hospital in Gainesville.
We made a consult appointment with Dr. R fully expecting to have surgery the next day. I just wanted this thing out of my head I told him. During the intake by the Dr.’s nurse practitioner Dr. R. stuck his head in the room introduced himself and took the CD of the MRI to look at it.
When he returned he shocked us by saying he saw no adenoma on the pituitary gland. “I can’t do surgery on something I can’t see” he said. “If it was Cushing’s disease (caused by a different type of tumor on the pituitary gland) I would go in and start taking out pieces of the pituitary gland because the life expectancy of a person with Cushing’s disease is about 3 years without surgery. I did not have Cushing’s disease but rather Acromegaly so he wanted to see what he was cutting out. As did we!
He decided I would have another MRI while in Gainesville and scheduled surgery the next morning if this MRI revealed more than the one I brought with me. I had the MRI and went home with a surgery time for the next morning as well as a special type of soap to wash with before coming to the hospital. As usual with surgery, I was NPO after midnight. (No food or drink after midnight). Dr. R told me that he would get his radiologist to read the MRI in the morning before surgery to confirm a target for surgery. 
The next morning we woke I washed as directed while Sharon had breakfast. We were about to leave for the hospital and just as Sharon was putting on her shoes the phone rang and Dr. R telling me the MRI was normal. His radiologist called it “stone cold normal”. No surgery. Come back in six months for a follow-up consultation. His last words were follow-up with your endocrinologist.
Had I been healed?
We were stunned. What a mixture of emotions! We were pleased, relieved, frustrated, angry and confused all at the same time. Had I been healed? We had prayed for that! What were all these medical appointments for and what about the long and expensive trip to Gainesville? I was prepared for having surgery and was disappointed it was not going to happen. Thinking back I wonder whether there was something wrong with my brain. I wanted to have a surgeon do a form of brain surgery on me? What was I crazy?
Being healed was our prayer and became our conviction as we packed up to leave about an hour after the phone call. Remembering I had not eaten since the dinner I wanted to eat breakfast before launching into packing and heading home.
But, had there been a healing? Knowing there are two diagnostic criteria for acromegaly we would have to wait for the next lab results to see my IGF-1 levels. I didn’t have an adenoma on my pituitary as determined by Dr. R all that was left was my IGF-1 results within the normal range. Many years ago Sharon gave me a hand-made a jewelry box with Ps 46:10 “Be still and know that I am God”… We were again in a place of depending upon the sovereignty and character of God as my next labs were 3 months away. During those three months we functioned as if a healing had occurred.
Dear Dr. Brewer,
I am so sorry you are having health issues again and that you have been on such a roller coaster ride trying to figure out what your health status really is. I can relate to being disappointed over not having surgery when you were at Shands Hospital and fully prepped for it. Recently I was having some breast pain and I had a mammogram and ultrasound and the radiologist told me there was a tumor that was suspicious and he strongly recommended I have a deep core biopsy. I had concern because my niece just months ago found out she had breast cancer and had to have a double mastectomy. But when I went to the surgeon to have the procedure done, he took another ultrasound, and he told me he didn’t see a tumor, that he saw a cyst, and there was no reason to do such an invasive procedure. Like you, I was confused, mad, upset and not sure he was right, and I was afraid if he was wrong it would continue to grow and it would be too late to do anything down the road if it was cancer. After a long discussion, I went with his findings. To say the least it was unsettling.
I also know the anxiety you must have felt thinking you were going to have someone operating on your brain. Twice I had a pituitary tumor and twice I had surgery. I too think I was healed on the second surgery, because when the doctor went in, there was no tumor. I did not have the same medical condition you had, my tumors were caused because my thyroid does not function and that stresses the pituitary gland to do all the work. I also went to Shands. You are in good hands there.
I am praying for you, your health, your peace of mind, and for a miracle of healing restoring your vitality so you can enjoy the renewed life God gave you with your new heart. He has more plans for you.
God bless you,
Patty, Jenna and Ron Chapman
Most acromegaly patients seem to have a particularly long and difficult journey before achieving a diagnosis. Readers may also be interested to read my summary and critique of the latest guidelines for the diagnosis and treatment of acromegaly.
http://doiop.com/AcromegalyGuidelines