Today Phil had a check up with his endocrinologist,
Dr. Vance. It went well and we gained more information about Addison’s disease
and how far gone Phil’s adrenal glands are. At his last appointment they did
some lab work and it revealed that Phil has no function left in his adrenal
glands. When they did the blood work they initially drew some blood and then
gave Phil and injection that was supposed to stimulate the adrenal glands. A
normal number for a persons cortisol level is any where between 20 and 60
depending upon the amount of stress that they are in. Phil’s level was a 1.1.
After the stimulant the number was still at a 1.1. So basically this means that
there is no function. Most likely because of the fall, the trauma and the
internal bleeding, those organs shut down during that time very similar to his
gall bladder, but we never knew. The other piece of information we gained from
the lab work had to do with Phil’s “tan” or darker complexion. Because Phil’s
adrenal glands weren’t making and releasing cortisol, the brain triggers the
pituitary gland to release adrenocorticotropic hormone (ACTH) which triggers
the adrenal glands to release cortisol. Because Phil’s adrenal glands weren’t
doing anything his brain kept trying to compensate for the problem. A normal
persons ACTH level is anywhere between 10-50. Phil’s were in the thousands!!
Sheeesh! No wonder his skin was so dark.
If these numbers weren’t surprising
enough, we fell into a pretty good state of shock as the appointment continued.
We had no idea the severity of Phil’s condition and how close to the brink of
death he had been living for the past year. Dr. Vance said that even after
surviving his accident, “it was only by the grace of God that [Phil is] alive,”
meaning that this disease, with how far it has progressed, should have killed
Phil. His body was in cardiovascular shutdown—a scary term to hear—it explained
Phil’s low blood pressure, terrible circulation and high heart rate.
The heat stroke that Phil suffered
from in July was a result of this disease. Phil spent 15 minutes in the sun and
he had to be hospitalized and was sick for 5 days after. Now we know it’s a
miracle it didn’t kill him. We were shocked by this news. We had no idea how
fragile Phil’s life had been. Every symptom that was a result of his disease
seemed justified by some other part of the trauma or injuries. The low blood
pressure came about after the bone graft, but he lost a lot of blood and we
were told it would go back to normal after a few months. All the joint and bone
pain, well that seemed totally normal since he had so many injuries and
surgeries, but they it was being amplified by this disease. The 40 pounds that
Phil lost was a classic sysmptom of Addison’s disease, but we thought it had
everything to do with his gall bladder and not eating well. The only real
symptom that didn’t seem to tie to anything was his skin color. But that wasn’t
really affecting him negatively. As I look back at some of the events I am in
awe that Phil didn’t die, I think he was probably pretty close a couple of
times. I wonder how he made it through that bone graft without his body
failing.
Dr. Vance explained that going forward
there wouldn’t be anything that Phil wouldn’t be able to do—this disease would
not limit him. But there would be precautions. Basically any illness or
accident could jeopardize his health. He would need to purchase a medical
bracelet or necklace that identifies him as having Addison’s disease and to let
medical personnel know that in emergencies he needs injections of cortisol.
Also when he gets sick he will need to double up on his medication and there is
a good chance that his sickness will last longer than average. If he needs
surgery he will need to tell doctors of his condition and let them know that he
needs special treatment, which will most likely end up with a phone call to his
endocrinologist because Addison’s disease is so rare, 1 in 100,000.
We are so thankful that this is treatable
and so thankful for the good doctors and nurses who have helped Phil. Prior to
being diagnosed, towards that end of October and beginning of November I had noticed
a decline in Phil. He was feeling more exhausted and starting to feel
light-headed again. That wasn’t a good sign because he was already on mediation
that had been helping those symptoms. As he met with his regular doctor in
Driggs, Dr. Horrocks was inspired to connect some of the dots and to look at an
old CT scan. It showed enlarged adrenal glands and was enough to point in the
right direction, to an endocrinologist. I called down to their office and of
course it was going to be at least two more weeks before they could see Phil.
It was so frustrating because I knew he needed to be seen. If I would have
known how serious it was then I would have pushed it harder. After that I
called every morning to ask if they had cancellations. For three days we had no
luck. Then Phil passed out at work, a clear sign that things were progressively
getting worse. It scared me and I was ready for opinion to be heard loud and
clear when I called the next day. I did not want Phil to end up in the hospital
when we could have things figured out. Little did I know that it could have
been so much worse. When I called the next day there was a cancellation, no
doubt our Heavenly Father was looking out for us. I hope all is well with the
person who cancelled. They will probably never know what a blessing that was to
us.
Phil’s dad reminded us a few weeks
ago of the blessing that Phil received when he was still in the hospital after
his accident. The blessing was given by his dad and Elder Runia. Elder Runia
said in that blessing that while there would be set backs, Phil would have a
full recovery. With those words in that blessing and seeing that things were
put into place yet again to preserve
Phil’s life, it is clear that Phil has a great mission fulfill. We cannot
express adequately the deep gratitude we have for the blessings we are
constantly receiving and for the love of our Heavenly Father and Savior. We are
humbled by Their love that They share with us. We are grateful for the medical
world and how it has blessed our entire family. We are grateful for those
wonderful doctors who have given so much to be specialists and who follow
inspiration. We are grateful for our family and friends who have sustained and
supported us in ways that I didn’t know were possible. It’s good to feel like
Phil is finally healing. His body is
getting the chance to recover and it’s so great to see the real Phil come back.
We are excited to see how much he will be able to progress over the next couple
months!!
I've included some pictures of Phil from this year to watch his digression. Looking at these pictures is pretty crazy! He actually doesn't look too bad leaving the hospital in April, but then the decline is obvious.
April
June
September
November
November, 1 weeks on meds! He looks so much better already!
