There was a time when I had a transplant coordinator named Betty that left much to be desired. She primarily organized her patient’s care with post-it notes and always chose the path that required the least amount of work for her.
I was on a downward spiral after recently being diagnosed with a serious problem; chronic rejection. My lung function was dropping almost daily and the doctors were struggling to get me stabilized. In addition, I was having persistent fevers that were concerning because if my body’s immune response were too high, I could also go into another form of rejection called acute rejection. I went to clinic to address the fevers and was seen by a doctor that hadn’t been on the team long and, in the end, didn’t stay long either. His analysis was that the fevers were being caused by my chronic sinus infections and his solution was sinus surgery.
Based on his conclusion, the wheels began turning to set me up for the surgery. I say the ENT doctor and he felt it would be a good idea, based on my history, to do the surgery but not a necessity. We went forward and made the surgery appointment.
The day before I was to go in, I had to go into the hospital for a battery of pre-surgery tests. I had one question on my mind that had never been answered: If my lung function was continuing to drop, wouldn’t being intibated and going under anesthesia make that problem worse? I knew that intibation and anesthesia was difficult to recover from when one was having lung issues.
The tests I had to have done took all day and were at a variety of different places throughout the hospital. At each stop I asked the caregiver when I would be able to see a doctor and ask them my question. The answer seemed to always be “later”. Finally, at nearly 5pm, I was at the final stop. I asked the nurse my question and for the first time that day her response was one of concern. She felt I had a valid question and encouraged me to contact my transplant coordinator. She gave me a phone and I called. Betty answered, to my surprise, and I told her my thoughts. She exclaimed that she had a note on her desk to call me and that she had meant to tell me that I shouldn’t have the sinus surgery until my lung function had stabilized. The surgery was canceled and I went home. I was only hours away from going under anesthesia.
What would have happened if I didn’t know that information and pushed for the answer? Luckily, we will never know but my fevers resolved and I never did have the sinus surgery.
After transplant, there are many, many medications a patient has to take. Some of them have side effects and some of them are counter-indicated. The major immunosuppressant can not be taken with any ibuprofen product because the two together can cause kidney failure. This is something they try to teach you when you are learning your medications but a friend of mine missed that lesson.
After his surgery, he was having back pain and began to take Aleve to help. A few days later, his lower back began to hurt and the pain extended all the way down the back of his thighs. Fortunately, he mentioned this at a clinic visit and it was quickly discovered that he was in early stage renal failure. They were able to treat him and reverse the effects of the ibuprofen interaction, but he was shaken.
This was not the fault of the doctors or nurses. My friend failed to take in crucial information that was provided to him. It can be easy to become complacent with your care and not think about all the details. That approach can clearly lead to a world of trouble.
I like to think of myself as a unique individual, but when it comes to my body that isn’t really a compliment. I can react to things very differently than “most people”. Some of that has to do with my emotional history, some has to do with my varying pain tolerance and some has to do with my personal body chemistry. Only I can know how I will handle certain medications and procedures and I have to somehow find ways to communicate these idiosyncrasies to those caring for me.
At one point, I had a central line called a Port-a-Cath. This was a wonderful device that allowed me to get IV medications with minimal pain and was not invasive. After my first transplant, this catheter was taken out as it posed a risk of infection. From that point on, I required a PIC line whenever I needed IV medications. This catheter is placed above the elbow and is fed in across the chest just stopping short before it reaches your heart. For most people, apparently, this is “no big deal”. For me it is incredibly painful. Between the existing scar tissue from past blood draws and IV catheters and the fact that I am very small, this procedure is at the top of my “most hated” list.
When it comes to getting a PIC line placed, I have become a Pavlovian dog. As soon as they wheel me into the room where it is done I start to feel cold, tremble and cry uncontrollably. This is not a welcoming site to those involved in doing the procedure and makes it all the more traumatic for me. At times I have even had this reaction when I am simply filling out the paperwork.
There have been doctors that gave me PIC lines that felt compassion for me. There have been doctors that have told me I shouldn’t be so upset. There have been doctors that did it very well and it turned out to be “not so bad”. There were doctors that did it very forcefully and I was in terrible pain for days afterwards. No matter what the circumstances, my reaction remains the same. I am scarred for life when it comes to PIC lines.
So what do I do? It is my job to convince them of the severity of my problem and make sure that I am provided with the proper pre-medication. I need to be very sedated before I go in that room. It can take time to convince someone that I need this pre-medication as this is not a normal request. Eventually, I may have to declare that I will not do it without the sedation. If that doesn’t work, it is then necessary to involve my transplant doctors in the debate. Usually, it doesn’t come to that but, regardless, I will not back down from this demand. It’s my body and I know it better than anyone else. End of story.
Everyone knows that “Knowledge is Power”. When it comes to healthcare, it can enhance or even save your life. The more you can learn about your illness and the treatments, the better able you will be to make informed decisions and ask the right questions. Information can be gathered from other patients, the internet, reading books and asking lots and lots of questions to the medical professionals around you. Take control, knowledge is the first key in being an effective Patient Advocate.