“Patrick, you are officially my sickest patient.” Those were the words that my husband’s doctor uttered upon my husband’s recent appointment on January 29th, 2019. I can’t begin to tell you how hard it was for him to hear that. He came home and was devastated. Out of hundreds and hundreds of patients, he’s the sickest his doctor has seen! Upon reviewing his blood test results, from which he concluded that Patrick was also now suffering from “Type 2 polyglandular deficiency”, he added, “Your body is giving up.” Imagine hearing that?
I am writing to you today because we really need your help.
We’ve all heard about people who go bankrupt due to insurmountable medical expenses, but we never thought it would happen to us. We have been on the verge of bankruptcy for several years and are in danger of losing our home. Were it not for the generosity of various family members; we would have lost our house a long time ago.
Our monthly pharmacy bill alone has been responsible for a considerable part of our debt. Patrick will likely need these medications for the rest of his life. We do not have medical insurance, as no company wants to ensure someone with pre-existing conditions. Without insurance, we are forced to pay out of pocket for ongoing treatments such as dental care, TMJ orthodontic appliances, orthotics, physiotherapy, colonic irrigations, chiropractic treatments, naturopaths, acupuncture, therapeutic massages, etc. And one must also consider the cost incurred when traveling to-and-from countless doctor’s appointments, hospitals, blood taking centers, x-ray and ultrasound clinics, etc. Patrick recently had to purchase a CPAP machine to treat his sleep apnea; that alone cost $1800. We can’t keep up. There are just too many medications, treatments, services and products that are not covered. We are both terrified of what lies ahead.
You can read up on Patrick’s unbelievable story on his BLOG at www.beinginvisible.ca. His story will leave you thinking, “How can all this happen to one person?” This Friday, March 29th, he will be undergoing a serious operation called a “Posterior Cervical Laminectomy & Fusion.” During his convalescence, he will be wearing a neck collar for six weeks post-op. This surgery is yet another setback both in terms of his health declining and the continued financial burden that comes with being hospitalized and unable to work.
My husband and I started dating when he was 31 years old, and he’s now 48. He was handsome, kind, and funny, even though he’d already been through some tough times with his health. He recounted the story of how he had been awakened in the middle of the night with excruciating pain in his left knee; the year was 1992. Shortly after this terrifying incident, after meeting with a rheumatologist, he was diagnosed with Psoriatic Arthritis, an aggressive and degenerative autoimmune disease that attacks joint cartilage as well as ligaments and tendons; He was just 22 years old. The saddest thing was that there was (and still is) no cure. And at that time, there were no advanced biologic drugs on the market like we have today that can slow down and sometimes even entirely halt the disease process, preventing further damage to the joints. Arthritis, which is often thought of as “old person’s” disease, was already knocking at his door; Patrick would have his first hip replacement at just 27 years old.
When people hear the word arthritis, they think of a bad knee that acts up on a rainy day, a stiff hip or back, or stiff joints in the morning. Indeed, television commercials promise amazing results with their latest medications, showing images of people in wincing with pain resuming their normal activities. These ads are not intended to help treat people like Patrick. Psoriatic Arthritis and Ankylosing Spondylitis are serious illnesses, that arepart of a family of inflammatory diseases called Spondyloarthropathies and that require advanced medical treatment and management. In the early 2000s, new “miracle drugs” (known as Biologics) started to appear on the market, but by that time, Patrick had already been living with his diseases for ten years. So as a result, a lot of damage occurred in those first years, forcing him to have both hips replaced by the age of 31, and more recently having his LEFT hip revised. Sadly, it was not a 100% successful surgery, and he has been left with permanent sequela, i.e., stiffness, pain, nerve damage, and bouts of acute sudden pain that shoot down through the femur depending on the rotation of the hip. Upon getting a 2nd opinion from an orthopedic surgeon in the U.S. last fall, Patrick was told that there was a critical piece of bone missing on which the weight is supposed to get distributed. This "missing bone" is something that got overlooked by his surgeon. When he asked what could be done to correct the problem, the doctor replied, “Another hip revision.” However, with everything he’s been through, the idea of having the hip revised again is not something he wants to consider.
With regards to joint damage, once the cartilage has worn away, it cannot be regenerated. So you end up with bone-on-bone friction, which is of course very very painful. Joint replacements can be the answer in some cases, but only certain joints can be replaced. Most of his joints have been damaged to one degree or another, so he, and others like him, must rely on strong prescription pain medication to get through each day.
In the last few years, I have seen my husband break down many times, unable to deal with what his life has become: weekly doctor’s appointments, surgeries, countless pills to be taken throughout the day at scheduled times, chronic and debilitating fatigue, isolation and depression. Patrick had to go to over 60 different medically related appointments in 2018 alone! He's also been diagnosed with other serious illnesses and syndromes, some of which are the resulting side effects from various medications. A man who used to work full time, take care of his young son and aging parents and be a supportive partner, is now often bed-ridden, unable to leave the house, and unable to work.
My husband will never again have the freedom that comes with having good health. It’s devastating for him and us. He is a really good person, and it saddens me to see all the hardship he has had to endure over the past 17 years that I’ve known him. I hope you understand why I felt the need to share our story.
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