While I am a big fan of talking to anyone you can get your hands on in order to get more information about your medical situation- that endorsement does come with a disclaimer.
Before my first transplant, I had a nurse that worked the night shift on the pulmonary floor who I became friends with over time. When I was in-house, he would visit my room when things were slow. Back then, I was a night owl and he almost always found me awake and ready for a good talk.
Trusting his experience as a nurse, I asked him the questions that were weighing on my mind so heavily. I was wresting with the idea of transplant and felt as though I was looking into a deep abyss, trying to find some answers. I was at the beginning of my transplant journey and was at a complete loss. His reply to my concerns was startling, to say the least.
When I asked him if he thought transplant was a good option, he almost became angry. He told me stories of those who had suffered terribly at the hands of an unsuccessful transplant. He insisted that transplants were rarely helpful and usually harmful. The bottom line was clearly that transplant was the gateway to a painful, horrible death.
I took his words to heart and played and replayed the images in my mind of the stories he told. I didn’t want to be one of those patients. I steeled myself to the idea of transplant and resolved that it was not a good choice.
It wasn’t until I got to know this man a little better that I realized how biased and one-sided his opinion had been. He hadn’t done any research into transplant success rates. He had never worked in the transplant clinic. His entire opinion was formed by the handful of transplants patients he served as a nurse on the pulmonary floor. He didn’t see the ones that weren’t sick and the ones that were out living healthy, active lives. All he knew of transplant was rejection, complications and pain. His perspective was entirely skewed.
Once I realized this, I was able to see his opinion as merely one slice of the transplant perspective pie. While what he had witnessed was real, that was far from the entire picture. I let go of the images he had planted in my mind and allowed myself to understand them as a possibility (no use for complete denial) while setting off to find the other pieces of the perspective pie.
While waiting for the transplant, it was a requirement to attend a bi-weekly meeting for patients and families. They called it a Support Group but it was more like an educational opportunity. There was very little crying and leaning on each other emotionally. Usually there was a speaker and when there wasn’t, people who had already had their transplant would talk about their experiences.
There was one girl in particular who had a lot to say. One girl and her mother, I should say. This duo had the gift for gab and would dominate the conversation on many occasions. She and her mother were that breed of patient and family that seemed to find their identity as a patient or the parent of a patient. I might go so far as to say they enjoyed illness on some level and delighted in being “the experts”.
This girl, Pam, had received a double lung transplant but was experiencing on again, off again rejection. She would be placed on the list for another transplant and then get well and go inactive on the list. Her journey was certainly and windy one.
Looking to the post-transplant folks for a window into the transplant experience, I often spoke with Pam and her mother about things they had been through. One story sticks out in my mind. Pam had been intibated due to some problems with her lungs and spent a few days in ICU. When she got better, the doctors pulled out her breathing tube. Pam was hungry and requested dinner from McDonald’s. Her mom obliged and Pam began to scarf down a hamburger, fries and a Diet Coke. Pam noted that it was odd that this food didn’t seem to satiate her hunger,in fact, she didn’t feel like she had eaten at all. According to Pam and her mother, it was soon discovered that, due to the breathing tube, Pam’s esophagus was not properly functioning and her food was not going into her stomach at all. According to them, it was going into her lungs instead.
This story and many of Pam’s other stories haunted me for months. Post-transplant was a mysterious world to me and all of these freakish things happening to Pam only made it more so.
Over time, I began to see that Pam and her mother were prone to exaggeration and enjoyed shocking people with their horror stories. To this day, I have no idea which part of Pam’s experiences were real and which (if any) were fabricated. One thing was surely clear, however. Listening to Pam’s stories did not help me and only served to unnerve me. I stopped engaging Pam and her mother at the support group and am happy to report that I have never had a problem with any hamburger or fries ending up in my lungs.
I am not a naturally skeptical person. When someone tells me something, I will believe it long before I would ever doubt it. Others may fall on the opposite side of this spectrum and doubt it until it’s proven beyond a shadow of a doubt. There is, as always, the happy medium.
When you are getting someone’s opinion, beware of the people who have only one side to share, good or bad. The truth usually lies somewhere in the middle and keep searching until you find all parts of the perspective pie. Nobody’s experience will match your own so try to keep some distance and know that your journey will be different. It’s essential to educate yourself but dangerous to hold anyone’s opinion too valuable.