I heard about an experiment once where they blindfolded people and put different kinds of tastes in their mouth…salty, sweet, sour. The first time they told them what to expect before they placed it on the tongue and, no matter how bitter or distasteful, the reactions were minimal. Then, they started giving them false information, like telling them it was going to be salty and it was really sweet. Despite the fact that what they got instead might have been more pleasant to taste, the reactions were strong and they were mostly anger or frustration.
I think of this experiment often. As a patient, it can be extremely upsetting to have a result you had not anticipated. Aligning your expectations with what is likely to occur is essential.
When I sat down with my surgeon, he told me that after the lung transplant I was going to feel like I “got hit by a Mac truck”. I was startled by his candor, but his strong warning allowed me to brace myself for what lay ahead. After my transplant surgery, I did feel like I had been hit by a Mac truck. Since I was expecting it, however, I wasn’t worried and was much better equipped to cope with the pain. I knew what I was experiencing was normal and I was able to almost relax into the discomfort.
When I sat down with my GI doctor before a G-tube placement, which is a day procedure, he told me it would feel like I “got stung by a bee”. It didn’t feel like a bee sting: it was very painful. For weeks every twist of my torso, every jolt of my step sent shock waves from stomach throughout my body. I spent my time worrying and crying. This was supposed to fee like a bee sting, right? I naturally assumed that because my experience was so vastly different than what I had been told, something must be terribly wrong. In fact, there was nothing unusual about my pain except the lack of warning. I had been mislead by my doctor.
When I think back on both experiences, the trauma of my G-tube was much more intense. I remember telling people that I would rather have a transplant than a g-tube placement! Wow. The power of expectation.
Three years after my second transplant, research started coming out that showed a connection between Chronic Rejection (a recipient’s greatest enemy) and acid reflux. The theory being that, if we have high PH acid in our stomach, we can aspirate that acid in our sleep. This, in turn, causes damage to the airways and may trigger Chronic Rejection.
The solution for this is a surgery called a Nissen Fundoplication. It is essentially a way to wrap part of the stomach around the esophagus so that acid can not reflux into the airway.
Because of my history, my team strongly urged me to have this surgery. I was not having any problems with my lungs and this concept was not completely persuasive. I resisted for many months as the idea of undergoing another surgery was quite unappealing. Deciding whether or not to go ahead with an elective surgery that would help me only in theory and when I was in a stable, healthy condition was one of the most difficult decisions I have ever made. Ultimately, I chose to move forward in the name of “doing everything I can to preserve my health”.
There was just one problem. Despite my insisting to speak with another patient with my body size (I am small and have trouble keeping weight on) as well as my history of transplant, nobody was able to produce such a person. All the cases presented to me were men. In addition, tests indicated that I needed to have a second procedure called a Poloroplasy. This would be the solution to problems that were likely to occur as a result of the first procedure! Again, nobody I talked to knew anybody who had done both of these surgeries at the same time. I was going into un-chartered waters.
You would think that going into the surgery so blind, I would have no real expectations. It didn’t work that way. I still sought out people to give me some sense of what was to come. I spoke with a nutritionist about my concerns regarding losing weight. She gave me a liquid diet that would allow me to take in 2,500 calories a day so I could keep my weight on even when I wasn’t able to eat solid foods. Piece of cake! My surgeons told me I would be able to go back to work in ten days. Easy as pie! My transplant team told me I would feel badly for a day or so and then I would be fine. Walk in the park!
As you might have guessed, it was not a piece of cake, easy as pie or a walk in the park. I was unable to ingest anything for over a week. I was so severely nauseous they had to use every drug possible to keep me from retching and tearing the internal sutures. (I still had a few horrible bouts of retching anyway) I lost over ten pounds and I was only 109 to begin with. For weeks I was absolutely miserable and completely unprepared.
My reaction was anger and regret. I was angry at myself for doing the surgery. I was angry at the nutritionist who acted as though she had a lot of experience with this procedure. I could barely drink ½ glass of water, much less 2,500 calories a day. I was angry with all of my doctors who did not tell me how hard this was going to be. I deeply regretted my decision.
It wasn’t until I healed, a month or so later, that I was able to take a step back and see what had been so obvious all along. This hadn’t been done before so why would I expect anyone to be able to predict the results? I was looking for answers and was only receiving guesses. (To my credit, the guesses were really presented as facts. I wonder if I would have gone through with it if I had gotten the honest answer: "We just don't know"?) Sometimes, when you are facing something scary, you want reassurance so badly that the truth isn’t very clear. I ignored the facts and listened with my fear.
If I had to do it over again in the exact same circumstances, I would resist the urge to find “answers” and look at it as an exploration. I would assume the worst. My only expectation would be that I was going to be the person that taught them how to do it better next time.
Of course, you can never know exactly what the future holds. Sometimes things go wrong and your experience is much worse than the “normal” case. Sometimes, what is horrible for one person is a breeze for another. Sometimes, there is no “normal” and you have to decide if you are willing to be a pioneer. No matter what, there is always going to be the variable that is the individual.
Having said that, a patient’s most powerful coping mechanism is often properly aligned expectations. This includes pain levels, surgical recovery times, medication side affects, length of stay in the hospital…the list goes on and on. Talk to your doctor and ask the scary questions about best and worst case scenarios. Seek out fellow patients with similar medical histories who have had the treatment done before you. If no precedent has been established, assume there will be difficulty. It is much better to prepare for the worst and hope for the best than to prepare for the best and be surprised by the worst.