When a patient is given news that they need to follow certain guidelines or have a particular procedure done the natural reaction is to look to the healthcare provider for insight. "How is this going to work?" "What am I supposed to do now?" "Will this hurt?" "How long is the recovery time?"
Often, I have asked these sorts of questions only to discover later that the answers I had been given were not coming from the patient perspective but from the eyes of the caregiver.
No Pain, No Gain
One big issue for many people with cystic fibrosis is being underweight. (I know, I know, how many people would love to have that problem? Trust me, it's not as fun as people seem to think it is!) Because of a "sludgy" GI system and the lack of digestive enzymes, CF patients are trained early on to eat high fat and high calorie foods. (Ok, this part isn't bad. But hey, there has to be some benefits to illness for each of us, right?)
Since I can remember my parents, my doctors and the dietitians have been singing the praises of high fat foods and special milkshakes which have around 600 calories per serving. Sounds logical, right? Infuse one food item with as much fat content and calories as possible, make it a part of the patient's diet and problem solved! Well, maybe for some patients but not for me.
Ingesting high fat foods and calorie-packed shakes usually result in me on the floor, doubled over with stomach pain. Somehow, this little detail never seems to get factored into the dietitians' weight gain formula. It has taken me years to let go of this philosophy which had been carved into my brain. I now know the foods that I enjoy and can eat a lot of without pain. So, I may not be drinking 600 calorie shakes but I will eat a higher volume of foods that won't hurt my stomach. In addition, the foods I eat are often healthier and without all of the preservatives that come with many high calorie items.
Recently, I went to a CF education day and the dietitian was lecturing on possible food combinations that would increase calorie consumption. Just looking at the list of foods she had printed out made my stomach hurt! Hot Pockets? Glazed doughnuts dipped in chocolate? Ouch! I was flaberghated that these were the food recommendations until it hit me: these were suggestions made out of thoery, science and logic, not experience. Ironically, health science and quality of life are often not compatible!
Better You Than Me
Two years after my second transplant, new research was indicating a link between chronic rejection and acid reflux. It was believed that, no matter how mild or severe a person's reflux may be, there was opportunity for stomach acid to aspirate into the lungs and cause damage, triggering chronic rejection. Because I had been down the chronic rejection road already, my team was anxious to have me iliminate this potential threat through a stomach sugery called a Nissen Fundoplication. For better or worse, I agreed.
When consulting with the GI surgeon, I asked all of the normal questions. "How does this work?" "What will the pain be like?" "How long will I have to miss work?" For each question, his answers were very reassuring. He described the surgery and assured me that the procedure was a very simple and straight forward one--the surgery itself would take less than a few hours. It was lapriscopic so there would be no major inscisons to heal and I would be out of the hospital in a day or two. Sounds easy!
After the surgery, my nausea was excrutiating. I was in the hospital for four days and spent weeks recovering at home. I couldn't eat without horrible pain and when I tried to go back to work I was too weak to make it through half of my shift. It would be almost a year before I could eat normally again. The Nissen Fundoplication had turned out to be far from easy.
To be fair, I know other people who have had this procedure and I certainly had a more difficult time than most. However, when I think back to the conversations I had with my surgeon, I realize that his descriptions of how things would play out had very little to do with what I would experience and more to do with his perceptions as a surgeon. My belief now is that because the surgery was easy for him, he translated his experience to the patient. In fact, when I went for my follow up appointment, his focus was on the healing of the laproscopic scars, not on the difficulty eating or the nausea. These things seemed to be of little concern to him and, I imagine, something that wouldn't stick in his brain to pass along to future Nissen Fundoplication paients.
As a surgeon, he described the procedure from the bedside view, from the surgeon's perspective. The surgery was short, very little cutting and a quick inpaitient stay. All of these facts added up in his mind to a simple procedure. Because he had not described this surgery from a patient perspective, nor was he focused on understanding the patient perspective, he had not adequately prepared me for the Nissen. My expecations were not properly aligned and this made the recovery even more difficult.
The bottom line? This man is a wonderful surgeon (truly, despite this story, I really like him) who would be an extaordinary surgeon if were just able to incorporate one piece of patient advice: just because the surgery is simple for you to perform does not mean it is simple to recover from it!
What I Know Now
There are some healthcare professionals who have a genuine interest in the patient experience. These are the people who ask questions and want to hear honest answers about how things have gone in the past or how they are going presently. After my Nissen Fundoplication one of my doctors heard that I was having trouble and sought me out. She wanted me, and some other patients with similar trials, to write out our experiences, starting with the consult and ending with an assesment of the procedure. We sent these essays to the doctor who read them, considered them and ultimately chose to be more careful in deciding when and to whom they recommended this surgery.
There are other practioners who have little interst in the patient experience and, I am completely guessing here, possibly have difficulty putting themselves in other people's shoes in many aspects of life. This does not mean that these professionals lack skill or are should be passed over for another doctor or nurse. In fact, these people could be at the top of their field. What it does mean, however, is that they are unlikely to be a good resource for a patient looking for clues as to what lies ahead or considering their quality of life in a particular equation.
Listen to what you are hearing. Does it match with your experience or the experiences of those around you? When the professional is explaining things, are they speaking mostly from their perspective or are they talking about what other patients have expressed to them in the past? If you begin to get a sense that your caregiver is not one to look at things from a "bed's eye view" consider what they are telling you but also seek out additional patients and professionals to give you a better idea of what may be in store for you. We can't all be perfect at everything so there's no need to blame a caregiver for not being good at thinking through quality of life issues but it is your responsibility to use your common sense and find someone who can.