Alan, age 54 - Canadian Orthopaedic Foundation : Canadian Orthopaedic Foundation

[This letter from then 54-year-old Alan, of Crowsnest Pass, Alberta, describes in detail his suffering while waiting for surgery on both his hips (printed here with his permission). Alan describes the indignities of chronic pain and disability, and above all, the frustration of being forced to wait for a solution he knows will end his suffering and restore his mobility.

If you are one of those awaiting surgery, you may find the Foundation’s free, telephone-based peer support program, Ortho Connect, helpful as both a practical and supportive resource. The program provides people newly referred for orthopaedic surgery with the opportunity to talk to a trained volunteer who has already been through a similar surgery. Volunteers understand what a client is going through and what they need to effectively prepare to help increase knowledge, confidence and enable them to actively participate in their health care decisions.

Alan passed away in May 2006. During his two-year wait for surgery, Alan became depressed and isolated as his mobility and independence steadily decreased and his pain increased. Before he died, Alan expressed his interest in the Canadian Orthopaedic Foundation’s peer support program then in development, which he felt would have been a critical support resource to him during his wait. It is with patients like Alan in mind that the Ortho Connect program was brought to life.]

August 24, 2005

I would like to describe how some of the realities of living with hip osteoarthritis (OA) and how enduring the wait time for surgery have affected me. I’m sure my story is representative of thousands of disabled Canadians suffering unnecessarily on wait lists.

I am a 54-year-old male living alone in a southern Alberta community. I have been gainfully employed for 33 years. X-rays determined I had developed osteoarthritis in my right hip in June of 1997. A Lethbridge orthopedic surgeon whom I saw told me that it was not he but I who would decide when I could no longer endure the pain and complications of the disease and would require surgery. I carried on with my life to the best of my ability.

I was laboring with my mobility and experiencing progressive pain and so decided it was time for surgery in September 2003. At this time I consulted my original Lethbridge orthopedic surgeon who told me that my wait time for hip replacement would be a year and a half. Because I wanted to pursue a different type of hip surgery known as Birmingham Hip Resurfacing, my local doctor made an appointment for me with a Calgary surgeon.

During the wait time to see the surgeon in Calgary, my left hip started causing me problems. May 2004 x- rays revealed that the cartilage had degenerated almost as badly as my right hip. At this time my local doctor’s receptionist asked if my appointment might be expedited and was told that the wait list stands as is and that the approximate time of my appointment would be January or February 2005.

This would mean that my wait to see the surgeon would be approximately a year and a half. My local doctor’s receptionist told me that the surgeon’s receptionist disclosed that patients being booked for appointments at present, May 2004, would have an approximate wait of two years for a consultation. In February 2005 my local doctor’s receptionist revealed that the wait time of the first surgeon from Lethbridge I consulted was now also at two years for surgery.

I finally saw my Calgary surgeon on March 8, 2005. I am on his list for surgery and was told by him my wait time now is 10 to 12 months, depending on how the system is working.

I have now been awaiting surgery to restore my mobility and eliminate the associated suffering for two years. During this time, my condition has worsened, as have other aspects of my physical, emotional and psychological health. As you read about my experience, keep in mind it could happen to any of us. These details describe what I live with every day as I wait. So far, waiting has cost me my health and much of my savings. Waiting has also cost society, since I am no longer working. This is why we must press our politicians to deliver much better health care.

I believe that much of this suffering could have been avoided if our Canadian health care system was better managed – including the all-important leadership of our elected politicians and senior officials responsible for management of the system.

My purpose in writing a lengthy piece about my physical suffering and my exasperation at the wait times for relatively routine surgery is to try to share information and bring about change. The wait times to receive appropriate health care in Canada are a scandal. Canadians pay a very high price for health care and are receiving inadequate service in return – especially as related to chronic health issues.

I’m asking that all politicians from all parties at all levels of government work in concert to bring about timely access to medical care with a level of care that would be acceptable to themselves and their families should they require it. Please don’t ignore the problem any longer and never let it surface again.

Sincerely,

Alan

These details describe what I live with every day as I wait. Waiting has cost me my health and has also cost society, since I am no longer working. This is why we must press our politicians to deliver much better health care. — Alan

Physiology

My pain and stiffness is most severe in my upper thighs and lower back. This pain is always with me whenever I make any type of movement that involves my legs or hips. My range of motion in lifting my feet is approximately one foot and I can only spread my feet approximately one foot apart without extreme pain. My step is approximately 6″ and I am very unstable when walking. Any sudden movement is extremely painful. I also endure painful spasms in my upper, inner thighs while sitting or lying. Another painful area at times is in my buttocks. I use two canes to facilitate walking.

Sleeping

It is painful to lift my legs onto the bed.
I have endured many a restless night because of pain spasms in my thighs. Sometimes these pains are strong enough to wake me and keep me awake.
It is painful to turn over. I often grab the edge of the bed for leverage.
Lying down is one of the few body positions where I have no pain. Having no pain is a blessing as it is so rare to me.

Dressing

As it has become impossible for me when sitting to bring my feet up close enough to my hands to be able to slip my lower body garments on, to put on a pair of underwear or trousers, I must stand and put one leg through the garment at a time. I must brace against a solid object or my cane to do this task. As I can barely lift my feet a foot straight up off the floor due to extreme pain, this is a very taxing procedure especially when a foot gets caught in the garment.
As it has become impossible for me to bend my legs and hips far enough to put my socks on, I have created a device for this purpose.
As I cannot bend to my feet, I cannot tie my shoelaces so must slip on all shoes or ask for help.

Walking

I watch people walking with ease, and am envious of this normal body function that is now foreign to me.

Walking is always painful and does not come naturally any more it is something I must force myself to do. Having OA in one hip, I started to require the use of a cane and now as my OA is in both hips, two canes are essential. My canes only support me they don’t free me from pain.
Because of the difficulty in lifting my feet, I walk with a very low step and I have found it essential to concentrate on every step I take. Walking is not relaxing and I do not walk with my head up in the air but am always reading the surface I’m walking on, whether it is smooth or rough.
Stairs and steps are very painful to negotiate and always create anxiety.
When shopping in a large store, I always use a cart for walking assistance, not only for the convenience of carrying purchases.
Any type of slope to be negotiated is very difficult and extreme care is essential.
In August 2005 I obtained a wheeled walker.
Obviously, winter is an extremely dangerous time of year. Every step is taken with extreme caution and concentration. Every placement of my canes receives equal attention and I have added “ice picks” to them for safety.

Sitting

The act of sitting down is very painful, mostly in my lower back. As I am very weak in my pelvic area, I have to lower myself down as far as I can and then drop into a sitting position. The shock of this procedure is always painful.
To sit in a car, I have to slowly lower myself backwards onto the seat then lift and maneuver my legs in with my hands. Splitting my legs apart is extremely painful.
When sitting at a table to eat, bending my upper body forward to position my mouth over my plate is painful.
Chairs with arms are very helpful to me when I’m attempting to sit and also when standing up.
When in a sitting position on a toilet, the movement required to wipe myself is painful.
As aforementioned I often experience pain spasms while sitting and cannot sit upright for long periods of time without discomfort. Reclining in a recliner is the most favorable type of seating I’ve found. Reclining takes the weight off my hips, and is the only reasonably comfortable position other than lying down where I may not experience any pain.

Standing up and Standing

This is another adventure in pain, discomfort and to some degree, embarrassment.

When getting up from a low-seated position where there is nothing I can use for leverage, I often have to go to the floor and kneel in front of whatever it was I was sitting on and boost myself up to a standing position with my arms. I have had to use this method to get up from low toilet seats.
There is always pain in the movement up to the standing position and also when I am standing. My pain as I am moving to stand is in my lower back and then when standing there is a strong sensation of pain across my pelvic area due to pressure being placed on my hips.
I often have to stand still for some time while my hips “pressure up” and the pain subsides before I can take a step. If I have been sitting for some time, the first five to ten steps are very painful and tentative.
The time it takes to shave is about the maximum amount of time I can stand without support.

Bending

My flexibility has deteriorated as time has passed during my time with osteoarthritis. My back and thigh areas are in severe pain when I bend. When bending, the pain starts as my hands reach about knee level.
I have to hold on to a stable object or my cane when I bend and can barely reach the floor. It takes a bit of time and a great deal of effort to bend down to the floor.
To enable me to get to the floor, I find it easier to bring a chair over and use it to help ease me into a kneeling position. I also use a garden kneeling device for assistance.

Driving

I drive a four-wheel-drive truck. This vehicle has a truck mounted booster step for easier entry. It is extremely painful to lift my foot up to the step. I then hold on to the steering wheel and lift myself up to seat level then swivel and drop to the seat which also elicits pain. I then must painfully lift my legs over to the driving position.
I have started to use a ground placed step to get up to the truck mounted step to ease my entry.
When first starting out, moving my foot from the floor to the gas and/or brake pedal is painful.
After driving with cruise control on for some time during which my feet are on the floor mat, even the simple movement of lifting my foot back to a pedal control is painful.
Turning to shoulder check, especially on the left side is painful in the lower back.
Getting myself mobile after any type of trip is also an effort, as again, I have severe pain as soon as I start to move out of my vehicle.
When I’m standing, I experience more severe pain as pressure is again applied to my hips.

General

Crawling is extremely difficult and painful.
The shock of an unsuspected sneeze when standing is extremely painful.
Packing anything over 5 pounds is a chore.
I have learned how to use my canes in many situations other than support when mobile. They are used to push and pull objects, pick up items and basically save me the couple of steps it may take to turn on a light switch or close a door.
I still do my own housework but due to my condition it has not been performed as well as when I was healthy and does not receive the usual regularity of attention.
The movements of sex are very difficult and painful.
Sometimes I don’t make it to the bathroom on time!
What effect will this extended period of inactivity have on my body in the future?

Sociology

The Public

As my condition worsened, I found myself becoming more reluctant to spend time in public. I was feeling self-conscious about my limping and when I had to use a cane full time, it compounded my feelings of being handicapped.
As I live in a small town and know a lot of people, it started to become a nuisance to be asked about my condition, even though people did it with good intent. I started to call for the mail after dark and shop out of town to keep myself away from people who knew me. I didn’t attend any local social functions for the same reason and still don’t. Being as anonymous as possible created one less pain.

Work

OA has taken away my ability to work in my chosen field of skilled endeavour. I’ve worked as an associate to the mining industry for 18 years and had a very successful career and living from this line of work.
Due to the need for mobility and strength to perform the tasks required, I simply cannot meet the challenge due to my current disability.
I’ve enjoyed the regimen of work and have been unduly delayed in returning to gainful employment due to my lengthy wait for appropriate medical attention.
Work always has some social implications. As I cannot work, these are also lost to me.

Companionship

I came to the conclusion that I was not worthy of having a companion. I didn’t feel that I had anything about myself that could be attractive to anyone and also that I would be a burden to anyone who might want to keep company with me.

Sports

Sports were always an opportunity for social times throughout my life. I hunted, fished, skied, played pool, golf and tennis and refereed hockey. Having osteoarthritis has limited me to pool and golf.
I’ve played golf for 40 years, and now there isn’t any aspect of golf that isn’t painful. Maneuvering in and out of the cart, getting to the tee box and back to the cart, teeing the ball (extremely painful) and swinging the club are all painful but I still try and play.
My partners are always there to get the ball out of the hole. Because I am so slow, I am so grateful that my group still allows me to play with them. I am constantly apologizing to them and thanking them for their patience. I appreciate them immensely.

Entertainment

Having most of the sources of fun that produced any type of amusement taken away from me by my disease, I started to spend more time in casinos. There, while sitting at a slot machine, I feel equal to the crowd in a physical sense in a social scene.

Psychology

The emotional pain of enduring the wait for treatment has been equal to or greater than the physical pain I’ve endured. It has altered my spirit and my sense of self. Every move I make involves my mind, not only during the actual physical action but also always prior to this action.
During any physical action, I am always anticipating a new pain that is different from the existing one.
- This being “on guard” feeling is very wearing.
I think forward to any events that may be in my future and try and anticipate how I’ll feel and look if I decide to attend them.
- I have missed many functions I would like to have attended due to my mobility complications and my depressed mental state.
Having to walk with a constant limp was the first effect on me emotionally. I started to feel self-conscious and with this feeling came a sense of personal devaluation.
Increasing pain and the fact I needed a cane for assistance, exacerbated my negative feelings about myself. I did not shop locally, call for the mail during daylight hours nor attend any social functions. I did this to keep myself away from all of the curious questions from people who knew me and I also started feeling embarrassed.
With negativity being such a part of my life due to my condition, I started to think that it would be a waste of a surgeon’s time to treat me. Someone of greater value should move up in the line.
There is an inevitable feeling that is assumed by friends and family when someone has this type of chronic suffering. Empathically, these people are also affected by seeing someone who they care about suffering with pain. This is another weight to my conscience, as this is what I bring to a room.
Because of the constant anxiety and pain that I endure, every minor situation is exacerbated. Whether I drop something, have difficulty performing a simple task, forget something and have to make another trip or things of similar nature, situations like these immediately elicit a reaction. Being always “on edge” with my condition results in over-reactions to many things normally trivial.
My canes are my best friends and essential to my mobility but when they fall to the floor when I place them at rest, I curse them.
I have spent a lot of time and too much money playing slots in casinos. I wasn’t there trying to win money but I found this to be one of the few situations where I felt I had some enjoyment and was on even playing ground with those around me.
My thoughts constantly ruminate around the waiting involved for treatment, especially the constant feeling of bitterness toward our governments because of their negligence in providing timely health care.
- The excessive wait for surgery has added a whole new and burdensome dimension to my situation.
I try and present a person of favourable demeanour when I am in public. My sense of humour hasn’t left me. Although I still try and make people laugh, I have lost my sense of laughter.

Safety And Security

Because of my lack of mobility, lower body function and strength I am extremely vulnerable to any type of situation that would require me to move quickly or to have to jump in order to keep me from harms way.
I am always worried about falling, as I cannot get back to my feet unless there is something nearby that I can use to boost me.
Crawling out of a window to escape a fire would be impossible. Going headfirst would be the only way.
I am an easy victim should anyone want to assault me.
I would be useless to someone that needed my help.

Cost

Living off my savings is very much a concern. The most significant cost that I bear due to my lengthy wait for surgery is the lost opportunity to earn an income.
Trying to find relief from the pain and discomfort of OA, I have purchased many items and have sought relief from various practitioners.
My purchases include a hand held massager, canes, a support seat for my vehicle, a heat/vibrating/massage type of seat and recently a wheeled walker.
I have paid to be treated by chiropractors and masseuses.
Snow removal in winter and yard care in summer is also a cost to me.
The “cost” of enduring OA without timely treatment has been most severe to my spirit.