My name is Tiffany and I am a Professional…patient.
I was born with Cystic Fibrosis.
I am 33 years old and I have planned my own funeral…twice.
I have sat down with the people that I love and told them that I only have 6 months to live.
I have held my mother’s hand as she cried and said she didn’t know how she would live without me.
I have had more days in the hospital than I could possibly ever recall.
I have scars all over my arms from the countless IVs, scars on my torso from chest tubes and scars from the clamshell incisions that were made when I had my double lung transplants…one in 2000 and another one in 2004.
Before my first transplant, my lung function was 18% of capacity. Before my second transplant, my lung function was 10% of capacity.
Translated, that means I got severely out of breath brushing my teeth.
I have lived with chronic illness, acute illness, sudden onset illness and terminal illness.
I know what it is to be a patient and I know what it is to be more than just a patient.
There was a time when my illness was my identity and my medical treatments were my life.
I looked to doctors and nurses for all of my answers…until I learned that they didn’t have a lot of what I needed to know.
There is a difference between healing and curing. I found out that healing was my job and medicating was your job.
Curing is when the body has rid itself of illness and disease. It is a physical state of wellness. Curing is modern medicine’s responsibility and can be done with or without the assistance of the patient.
Healing can be done no matter what the outcome of the illness- healing is achieved from within and may still have a result of physical death. Healing is an emotional/spiritual state of wellness. This is the patient’s responsibility and can be done with or without assistance from doctors, nurses etc.
It became my job to strengthen myself from within, despite the pain I was enduring. Happiness comes from within, suffering comes from within.
I began to ask questions, do research and take diligent notes on my medical history. I became an empowered self advocate. I explored many alternative therapies, despite my doctor’s objections. Some helped, some didn’t.
I knew my options, knew my medications and treatments and made sure that those caring for me didn’t make any major mistakes.
So why I am I telling you all of this? It is not to brag. It is to confess…despite my ability for self care, at the end of the day, you and I have to work together, and you still hold a lot of power.
When I was 21, I had a doctor that was treating me for CF. I was in college, but struggling to stay in as my health was deteriorating.
As strange as it is, nobody had ever mentioned transplant to me.
For all I knew, this was to be my life, lung infections, IV therapy and feeling the way I had always felt.
This doctor made comments to me that I will never forget. He told me my health was “pathetic” and that he often sees CF women hit 21 and “go down hill”. He casually told me that I needed a transplant and it was as though a bucket of cold water had just been thrown in my face.
Looking back, I see that he knew things that I didn’t know, that this was a trend and that the changes in my health were “normal”. Looking back, I wonder, perhaps he was actually a well-informed doctor who knew what he was doing.
I also see that “transplant” is just another word in the vocabulary of a CF doctor and it wasn’t his intention to terrify me. But he did.
I imagine that he didn’t understand the pain and fear that his words filled me with.
I also know that, had he thought about my position, he could have helped me understand that my current health was expected, a normal course for someone like me, and given me options to think about.
Looking back I see that he could have made me feel good about transplant and my hope for the future. Instead I fired him and wouldn’t let anyone mention the word “transplant” again for an entire year.
Maybe he was uncomfortable with giving me bad news. Maybe he had forgotten that I was a person and not just a grouping of cells and genetics.
Regardless, he could have done his job differently and changed the course of my life.
In my illness career, there have been countless time I have grieved for myself. The times that stick out the most are the times when I was given a terminal diagnosis.
It felt as though I had been hit with a mac truck and all the wind was knocked out of me.
I was sad that I was dying, sad that I wouldn’t be able to do and become all that I had hoped to be in this life.
I was confused. Dying feels much like being very sick, I wasn’t sure how to know the difference!
But mostly, I was adrift: what do I do now? How do I live now?
I asked my transplant coordinator this question and her answer was a sharp: “well, you’re not on oxygen yet!”
I still don’t know what that has to do with anything, except to make me feel as though I had no right to complain.
I was surprised to find that none of the medical professionals I asked had much of an answer to that question.
I found the answers on my own.
I was amazed to find that as my outer body weakened, my inner self strengthened and the world seemed a much more beautiful place.
Eventually, I had to quit working.
As my body became so sick that there was little I could physically do, I began to look inward and created “projects” for myself; like becoming a more compassionate person or learning more about things I had never thought much about like painting.
I found that no matter how sick I was, I still deeply desired to have purpose in my life and that purpose is what allowed me to get out of bed every morning trailing yards of Oxygen tubing behind me.
Despite my experience and willingness to explore the boundaries of life and death, the fact never changed that I looked to my caregivers for guidance.
From where I sat, my team was the one with experience in Chronic Rejection. My team was the one with the experience in the whole dying thing. I was just one person struggling through on my first time around.
I have asserted to doctors that since they have the practice in these things, the illness and the dying, that they should be doling out more pearls of wisdom. The response is that they really don’t know what a patient is going through and therefore doesn’t have many pearls to distribute.
It is my belief that a doctor or a nurse has great potential to facilitate the possibility of healing through clear communication, setting proper expectations and giving the patient a summary of what they are likely to face. I refuse to believe that this is outside the bounds of possibility.
For example, if I could go back in time and tell Tiffany Who Has Just Been Diagnosed With Chronic Rejection And Has No Hope Of A Second Lung Transplant where to go from here, I would tell her a few things.
First, that she should enjoy the health she has now as it will decline. I would tell her to think about what is meaningful to her and highlight those parts of her life. If her job is important, keep that job until she can no longer physically do it. If her family is important, make time for them and focus on creating quality time with them as much as possible. If there is something “she always wanted to do”, now would be the time to do it, while her body is still able to get around.
I would tell her that she has some grieving to do, sadness and anger will be visiting. She will need to grieve the loss of her future and experience the pain of saying goodbye to those she loves so dearly.
I would tell her that after the grieving is done, there is a possibility for great inner peace and acceptance of what life has offered.
I would offer her information on programs, counselors and other people that might be helpful to her on this journey. I would tell her that I would answer any question she had about the physical process of her illness and death whenever she was ready or needed to hear it. I would promise to be honest with her at every turn, if that is what she wanted.
None of those things are terribly deep or complicated. None are too specific and at risk of misleading her into false fears or hopes. All of those things are simple truths that anyone who spends time with the sick would observe over and over.
This is where being a doctor or nurse becomes very tricky. If you, as a healthcare provider, are not willing or interested in exploring the emotional sides of illness, you will be unprepared to guide your patients in a time of need. If you are not willing to face your own mortality, you will be uncomfortable dealing with those who are.
This is a tall order. This requires much more from a person than going to school and getting a degree. The truth is, if you would like to be a doctor who helps heal as well as well as attempts to cure, this is what is required.
Finally, I can not go without mentioning, as this is very close to my heart, the dangers of confusing healing with curing and therefore judging a patient’s dedication to getting well by the physical results. In some of our “power of positive thinking” perspectives, there is a tendency to put responsibility on a patient for their success or failure, success being living and death being failure. I can assure you, this is a responsibility too awesome to bear.
Death is not a failure and it is most often not a choice. I have known many that have died before me that were not in any way lacking a positive attitude or a will to fight. I could never call myself a survivor because that would make them a failure. They were anything but.
If it were not for my second transplant, I would have died. In the same way, my spirit was so strong, I could never call myself a failure and would have been crushed if someone had. Please be careful when you make assumptions about who is “working hard” and who is not. Appearances are not always what they seem.
I wish you all the best in your careers. In my journeys, I have found that being a doctor is an awesome responsibility. It is my experience that the good ones never are so bold as to think that they are up to the task.