The story of Bert
Dear Very Rare Disease (Acromegaly),
It seems you knew me years before I even knew you existed. Without my knowledge, you introduced yourself to me and my ENT in the mid 90’s without even telling us you were present. Because of you, I had severe obstructed sleep apnea caused by an enlarged uvula and enlarged soft upper pallet. My ENT surgically removed my uvula and upper pallet but that didn’t help. Because of your hidden talents, I remained in danger and to my disliking kept my severe sleep apnea. You deceived my ENT as he had no idea what to do next to help me and therefore, I was subjected to your destruction without even knowing your name.
Do you remember when you came and visited me again in 2006 like a thief in the night. You gave me a present I did not deserve. Friends and family told me many times that I was such a caring big-hearted person. Little did I know, you were listening to them and decided to give me what they said I was. You gave me an enlarged heart with congestive heart failure and 5% injection fraction. I was told that I should have died and escaped death by being put in Cardiac ICU for 7 days. You enjoyed eating me up from the inside, knowing it was hard for me to recover, forcing me to have multiple heart comorbidities including cardiomyopathy & ventricular tachycardia that to this day I am still having to suffer and fight just to feel my heart beat normal if only for a mere few minutes. Your input has given me such things as multiple ablations & implants because of your effects on me. You didn’t care how painful it was for my electrophysiologist to implant a defibrillator in my chest so it can shock me with 800 volts @ 1/4 amp in order to get my irregular beating heart back in sync, my only satisfaction is that when it finally did shock me, it also shocked you.
You weren’t happy with that though. You still hadn’t knowingly introduced yourself to me when you decided to try and kill me again with your deceivious ways on that fateful March Day in 2010 that I was hospitalized again in the ICU & diagnosed as diabetic with an 825-blood sugar, all because of you. But you got caught this time. My endocrinologist saw right through you and suspected you were hiding inside me. I bet you just couldn’t believe it when she checked your secretions of GH & IGF1 and knew you were there. And then the CT-Scan found you, sitting there on my pituitary, laughing at us that it took 15 – 20 years for us to even realize you existed and to find you. But now I knew your name, Acromegaly; I knew where you resided, I knew what you were capable of and the most important thing I learned – I learned how to deal with your ways.
The neurosurgeon kicked your ass when he transsphenoidally removed you from the base of my brain and then I was laughing at you while in remission, no longer suffering from your gift of obstructive sleep apnea and being able to heal my heart at least some, since the damage was already done. But you proved yourself to be a determined foe, 2 years later in 2012, you gave me that dreaded tumor again, attacking me again with all your might. You really piled it on with the kidney cancer, enlarged cystic disease, enlarged bile duct disease, 40+ colon precancerous adenomas, enlarging my skull, orbital sockets and frontal bossing of the brow, skull suture separation, elongating & misaligning my lower jaw, curvature of my spine, chari malformation, screwing my teeth up, giving me multiple enlarged organs, headaches, acro-fog, memory lapse and too many other symptoms to remember.
It’s been a long 12 years and a journey that I would not wish anyone to suffer; all the blood tests, procedures, CT-Scans and medications, but today, because of you, I am stronger. The constant daily injections are keeping you caged and controlled, defeating your aggressiveness, and keeping you at bay. My Quality of Life is much better now; because now I know who you are; I know that you exist within me; and I know that now, I can control you.
Because of you and your antics, I have been stared at by children and called many names by adults because of how this Rare Disease has affected my features, if they only understood, if they only knew just how close to the truth they were, if they only knew that my Rare Disease is Acromegaly.
Sincerely (Not yours anymore),
Bert aka Lurch, aka Shrek, aka Andre the Giant, aka the guy with a caring big heart