Twenty-five-and-bit years ago I carried My Darling Bride across the threshold. If you’ve never met me, I’m not a 6’4” 275 pound hulk; I’m average height, and about 165 lbs. For better or worse, for richer or poorer, in sickness and in health…
Remember that last part.
Around a year after that blessed event, M.D.B. noticed something wasn’t quite right. In spite of running after 2 kids all day, keeping house and working, she was gaining weight inexplicably. It wasn’t like she was lounging on the couch eating bon-bons all day. I did the groceries then (still do), so I know what was in the house. And we ate the same food, in fact, I usually had seconds.
Also remember that last part.
Something in her metabolism was off.
A trip (or three) to her Doctor to dig into the problem yielded nothing but frustration. He declared her depressed and prescribed happy pills.
That was it for Doctor 1.
The weight kept rising.
I got her in to see my Doctor, who started fresh. She did some tests, changed her diet, and monitored her for diabetes and other such stuff. After one round of tests, she contacted M.D.B. at work and cautioned her that her iron was dangerously low, and she shouldn’t drive. More tests were ordered. Maybe we were getting somewhere. However, before anything was diagnosed, Doctor 2 announced she was pulling up stakes and moving to another city.
By now her face was changing colour and she was developing a pronounced ‘hump’ on her upper back. The scale kept climbing and the extra weight was taking its toll on her knees so she started to use a cane. She once fell straight down from a small step stool and broke her foot in 3 places.
Enter Doctor 3. He decided that her now football sized knees were not arthritic, all she had to do was lose weight. He prescribed a diet clinic, but nothing for her pain. At the diet clinic (Doctor 4) she was prescribed a very high protein/ low carb diet. She gained more weight. During this period her knee gave out one time, she fell 2 feet from a crouching position, and broke her leg.
Sometime around this point, at her Fathers 75th birthday party, she used her Mother’s glucose meter and the reading came back off the scale. Tests from Doctor 3 confirmed Diabetes. Here is a new diet. Not much different than our current diet at the time (remember that?). And here is a bunch of meds, but nothing for pain.
More weight was gained and she was deemed ‘morbidly obese’. In spite of our insistence that it was something metabolic, not diet related, Doctor 3 was convinced all she had to do was eat less. But she eats less than me.
Because of her weight, diabetes and moderately high blood pressure, Doctor 3 refers us to Doctor 5, a Cardiologist, to monitor for heart disease.
In between visits to Doctor 5, M.D.B.’s knee gives out and she falls. A bruise develops on her leg, which progresses into an open sore about the size of a quarter. Doctor 3 prescribes antibiotics, but nothing for the pain and inflammation and refuses to send her to an Ortho for her knees.
By the time she next visits Doctor 5 a number of weeks later, she’s had several rounds of antibiotics and the open wound is now the size of a toonie. Doctor 5 is aghast and has her immediately admitted to the hospital for wound care. Doctor 6 excises the wound, and she spends a few days on intravenous antibiotics. They both send sternly worded letters to Doctor 3. Doctor’s 5 & 6 probably saved her leg, if not her life.
In the meantime Doctor 5 sends her to a Sleep Clinic (Doctor 7) and a CPAP machine is soon ensconced in our bedroom.
Back to Doctor 3, which by the way, is also an Ordained Minister. This time, M.D.B. in the wheelchair she uses part time. He tries to sell us his book, still refuses to give her anything for the pain, again denies requests to see someone for her knees, and wants her to consider bariatric surgery. Her knees are the size of footballs and she eats less than me, dammit. It’s not her diet!
She has a hump between her shoulders, both knees are so bad she can’t walk without a cane, and often uses a wheelchair, has cellulitis on both legs, her face is purple and she has sleep apnea.
We found another Doctor.
Doctor 8 heard our tale of her woe, and decided to start fresh. A large battery of tests were ordered, medications adjusted (still nothing for pain) and follow ups planned. Then he suddenly retired to care for his terminally ill wife.
Our file is taken over by a Nurse Practitioner in the same office, but for purposes of this essay, he shall be Doctor 9. More tests. A routine Pap smear shows abnormalities. Off to the Gyno, Doctor 10.
Doctor 10 finds unusual thickening of the uterus. It has to come out, but not until she loses weight.
Doctor 9 orders x-rays on her knees and sends in a referral to an Orthopaedic Surgeon, Doctor 11
Doctor 11 says yes, she needs new knees, but there is a long wait. In the meantime, she gets cortisone. Still no pain meds.
There is a long backlog for knees in our town, so Doctor 9 sends us out of town to see an Arthritis Specialist, Doctor 12.
Doctor 12 thinks she might have Lupus, orders a bunch of tests. The tests come back negative, so 12 refers us to 13, a Dermatologist.
Doctor 13 says she has Lupus and that the tests were wrong, and orders retests. Same results.
Doctor 13 refers us to Doctor 14, an Internist.
Doctor 14 orders a fresh battery of tests. He finds something. He finds a high level of Cortisol, the steroid associated with stress. Normal levels are around 40, hers is around 400. The fight-or-flight chemical. Her body was retaining every calorie to be used for mortal combat or to flee in fear.
Wikipedia defines Cushing’s as,”… a collection of signs and symptoms due to prolonged exposure to cortisol. Signs and symptoms may include high blood pressure, abdominal obesity but with thin arms and legs, reddish stretch marks, a round red face, a fat lump between the shoulders, weak muscles, weak bones, acne, and fragile skin that heals poorly.”
Doctor 14 sends us to an Endocrinologist, Doctor 15.
Doctor 15 works in a clinic with a team of Specialists including 13 & 14. There is also a Phycologist (16), Diabetic Specialist N.P (17), Kinesiologist (18), and Dietician (19)
Doctor 15 sends her for a fresh round of testing, including some special tests, and an MRI. They find a tiny 3 mm tumour on her Pituitary gland.
Doctor 15 orders surgery to remove the tiny tumour. They will go up though her nose and cut it out. This requires an Ear Nose Throat Doctor (20) and a Neurosurgeon (21)
That surgery was a year ago this month and was a success. Her Cortisol levels dropped by half overnight. Recovery was long and rough, though. There was severe Steroid withdrawal. The Cortisol masked her real pain and dulled her other senses. Her sense of smell and taste were now hyperactive. Just the smell of food made her nauseous and she couldn’t eat. Mild steroid replacement was prescribed and that relived the withdrawal. But she was in absolute agony, her knees crunched when she walked and she couldn’t take more than a few steps without aid. Pain relievers were finally prescribed! (this is more than 20 years in!) At The Boris Clinic, Doctor 15 and his team (16, 17, 18 & 19) worked closely with us over the next several months to get M.D.B. back to her old self. Because her case was so complex, we came from out of town, and she needed my assistance to get about they went out of their way to schedule us appointments at least on the same day, if not back to back. Sometimes the other Specialists would seek us out just to chat, even if we didn’t have an appointment. We can’t say enough good things about them.
A year later, the ‘hump’ is gone, the weight is melting off, the cellulitis is clear, her colour is normal, her hair is regrowing in the right spots and her Diabetes is gone. Her last two A1C blood tests came back normal even though she hasn’t been on meds for 6 months. Her sleep apnea is also better and Doctor 5, the Cardiologist, has released her as a patient because the rest of her cardiac symptoms are gone.
A tiny, 3mm tumor.
The diagnosis and cure came too late for her knees though, they are shot. Doctor 11 has had her on his list for over a year by now.
Doctor 10 still wants to remove her lady parts, but she can’t lose enough weight because she can’t walk. So he is still on hold.
Doctor 9 (remember him? The Doctor that’s not a Doctor.) pokes Doctor 11 to try to get a move on her knees. Doctor 11 won’t even return his calls. Her pain is acute, and she has developed a new pain in her abdomen. Doctor 9 (the one who got the ball rolling to end the Cushing’s) goes into action again.
He tracks down several joint-replacement Specialists within an hour drive and we get into one nearby within a few weeks.
Doctor 22 takes one look at her x-rays and the very next day we have a date for replacement only a few months away. New knee on the horizon!
Doctor 9 also refers her to a Pain Management Doctor (23!). He takes one look at her file and decides to forgo the formalities and head straight to the good stuff. She now has some relief. She’s not pain free, but she can manage.
By now Doctor 9 knows we are both frustrated and proactive. He sends M.D.B. for an ultra sound on her abdomen. While I’m watching, the Technician keeps going back to the same spot. The ultra sound reveals a fist sized mass on her kidney. Benign masses are often associated with Cushing’s.
So, Doctor 9 orders an emergency CT Scan sends us to an Urologist. Doctor 24 reviews the CT and determines the mass is on the Adrenal Gland, and orders an MRI for a better look. The MRI confirms the mass is likely calcified adrenalin. But he works on Kidneys and related stuff.
Yesterday he tells us he’s referring us to another clinic.
We meet Doctor 25 soon we hope.
Thank goodness Doctor 9 (the Doctor that's not a Doctor) believes us.
If Doctor 1 or Doctor 3 had only believed us more than 20 years ago.
She didn’t have to be this way.