The Frustration of Living With the Lifelong Consequences of Medical Professionals' Mistakes

Many of us may look back at our lives to those moments we probably wish we could change. We have likely all made poor judgment calls and decisions that make us wish we could go back to that moment and change how we acted. But when the mistake is due to another person’s actions and has ended up affecting the quality of our lives, accepting and moving forward can be even more difficult. It can be heartbreaking when these actions cause more challenges in how you live your life.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

For me, my worst experience was when I was awaiting my second, life-changing neck fusion. My life was suddenly on the edge as I had a catatonic episode that left me unable to respond, walk, or move. My oldest son and his wife decided to contact the rescue team and have me transported to the hospital because they were unable to contact my husband and were at a loss what else they could do to help me as I faded in front of them. They stayed by my side to advocate for the complexities that come with my Ehlers-Danlos syndrome (EDS). The rescue team chose to keep me sitting up to allow me the best chance of breathing. But upon my arrival at the hospital, it was decided that they would transfer me to a stretcher. My son and daughter-in-law asked them to please move me gently since I easily sublux and even dislocate my joints. But those words were not listened to and instead, I was plopped down on the stretcher. I actually remember saying “ouch,” even in my catatonic state. That moment showed a lack of respect towards my advocates and also caused a permanent issue with my hip in the transfer.

Due to this one action, I now have to constantly be careful with bending down and picking anything up. Because if I am not careful, my hip will sublux in a heartbeat. Thus, even long walks can shift my hip out of position. If only I still had my service dog, I would be able to get her help with getting the items I need, thus helping with this constant damage I live with.

Another person’s mistake, my lifelong consequences.

This also happened when I flew out to Wisconsin for surgery on both my feet because they had suddenly lost all ability to hold together due to my EDS. I was not able to walk and had bones in both feet constantly subluxing out of position. It was decided that it would be best to have both feet surgically reconstructed at the same time since neither foot would be able to withstand the weight of my body and a cast on the other foot. The surgery seemed to go as planned, and I returned home with casts on both of my legs, totally non-weight-bearing for months. I even had to get Hoyered off the bed into my electric wheelchair. 

As the healing began, I kept calling the podiatrist who was taking over my care in my home state and explained that there seemed to be a nail stuck inside my cast on one foot. More than once, he took the cast off and recast it to try to figure out what was wrong. When a scan of that foot was finally done, it was discovered that the second surgeon who worked on this foot had severed a nerve and impinged another. To my horror, the only way to end the pain I was in was to return to Wisconsin and start the process all over again to correct the wrongs that had happened to me. Although the second surgery corrected those issues, that same foot easily subluxes no matter how many times the bones are returned to the proper position — despite working daily on strengthening those muscles.

Another person’s mistake, my lifelong consequences.

This happened yet again when I was flown out to Wisconsin for leg surgery and was using my wheelchair. Not being able to walk and hand the chair over to the airline can be emotional, especially when you discover they had broken your wheelchair so severely that you cannot even sit in the seat. This was not a positive way to head off to surgery and deal with the severe damage and the loss of my mobility. It took seven months of “loaner” chairs that were never the right size for me until the battle for compensation for my wheelchair was finally over.

Another person’s mistake, my months of consequences.

And another time I lived with someone else’s mistake took place at a hospital in Long Island, New York. Due to my complex medical conditions, I had been asked to come to the hospital a week before the surgery for a pre-op appointment to get all of my ducks in a row. The trip was appreciated because I know they were working to keep me safe. 

When we returned a week later, though, I awoke in the recovery room in horrendous pain from the second neck fusion. I asked why I was not receiving the low-dose IV medication that my pain doctor had asked them to use, which had been discussed at the pre-op appointment. I had no other option for relief since I am unable to metabolize many medications, according to a DNA drug sensitivity test. When I asked for different meds, I was told, “We don’t use those in this hospital.” They were only allowed to give me a large dose of the medication, which they did at least four times. This sent me tripping and then waking up shortly after with my back in horrible pain. Why had they not discussed this with me when I came all the way down the week before to get everything in order? Thanks to the sympathetic pharmacist who came up to talk with me, I got the low-dose pain relief, but this meant I was required to stay in the recovery room for two days just to get my pain medication. To this day, I have never forgotten those trips those high doses took me on or the horror I experienced.

Another person’s mistake, my lifelong consequences.

The hip struggle I faced was addressed when I wrote to the hospital about my trauma and then offered to do an in-service to the emergency room staff to hopefully prevent the same situation from happening to another person with EDS. I was shocked when I received a call taking me up on my offer to educate the staff. Of course, I am sure there is a quick “changing of the guards” in the emergency room, but hopefully what they learned was applied to any other position they had in the future.

I have found we have a right to be angry, disappointed, and overwhelmed when these unfortunate and unnecessary actions of others give us lifelong consequences. But we need to find a way to be heard and help prevent situations like this from happening to others. So if this happens to you, remember that how you use your words can be effective, but it needs to be presented in a way that opens others up to listening to you and not tuning out from intense anger. For instance, making an offer to educate hospital staff or others about your condition can be magical in situations like these. Maybe you will be able to find a way to turn your experience into a positive after an event that’s so horrifying and life-altering.

Still, I choose not to spend my life angry. I have instead learned to speak out in a polite manner in hopes of finding a way to help prevent these situations from happening to someone else. So for those of you who have also had frustrating, painful consequences for others’ mistakes, consider finding a way to express your concern and offer constructive solutions. These experiences often wake us up to remembering and appreciating that each day is a gift, especially when you know you are safer from others’ mistakes.