I’ve previously discussed the moment that a pulmonary hypertension (PH) specialist waltzed into an examination room and slapped an expiration date on my back like a carton of milk. Unfortunately, this day probably will be etched in my mind forever. I was so dumbfounded that I asked “Five years to what?” when he came in and told me I had “about five years left, 10 if I was lucky.” It was at that point that my doctor had to explain to me that pulmonary hypertension is considered a fatal disease.
I will spare you the details of the tears that followed, along with my doctor wanting to put me on suicide watch. Did I mention I did not handle the news well? No? Well, I didn’t handle the news well. I had my heart cath a few days later, and a nurse had to stay with me in the recovery room because my patient file said I was a suicide risk. Did I mention that this was on Christmas Eve? PH: The gift that keeps on giving.
In the years following my diagnosis, I have looked high and low trying to find a glimmer of hope when it comes to life expectancy. Although PH is a progressive and incurable illness, I have learned that just like any illness, every patient is unique. While statistics help to show how devastating PH is as a whole, I try to remind myself of some of the things I have learned about life expectancy as a PH patient.
Here are a few pointers I wish I knew upon my diagnosis:
• Facts and figures: Statistics are about other people, not about you. (Seriously, ask anyone who has ever taken a statistics class!) It is an average collected from people who most likely are very sick, so obviously the statistics that are available are not exactly comforting to those of us with PH.
However, it also is important to remember that a lot of statistics about PH and survival are out of date. Several new medications for PH have been introduced in the past couple of years. As newer medication becomes available, the future becomes unknown. Simply put, we don’t have long-term data on how newer medications may impact (or improve) survival.
• New treatment options: I have seen the introduction of several new PH medications since my diagnosis about three-and-a-half years ago. (Unfortunately, because I live in Canada, I do not have access to the majority of these medications.) New treatment options are exciting because as we gain more knowledge about a disease, more effective and less invasive medications can be developed.
As someone who grew up in the ’90s, I remember when diseases like HIV were considered terminal. However, thanks to advancements in medicine, the life expectancy for HIV patients in North America are near normal with treatment. I know that HIV and PH are two very different diseases, but I use this as an example to show how survival can be impacted when medical breakthroughs happen.
I once had a doctor tell me that I was diagnosed with PH at the right time because we are on the cusp of big breakthroughs. I truly hope that is the case, and that we all have access to these breakthroughs (regardless of our ZIP code or income) once those treatments become available.
• Long-term survivors: Many of the support groups that I joined online reinforced the idea that a long-term survivor was anyone who has lived with PH for seven years or more. (As someone who was diagnosed with PH her 20s, seven years does not sound long enough.) Through support groups, I was able to befriend long-term survivors who not only survived seven years past their diagnosis, but 20 and 40 years past it.
Many of these fellow PHers were given a life expectancy that they have outlived. In fact, a handful of them were told they had a few hours to live and would not be leaving the hospital alive. If you are looking for some stories of hope, I would recommend reading PHighter Friday stories written by Carolyn, Donna, and Jeannette, whom I interviewed on my old blog, “The PHight or Flight Project.”
I started interviewing fellow PH patients after my diagnosis because I wanted this information to be available to other patients, families, and doctors. Statistics may paint a different a picture for survival, but it is important to remember there are exceptions to every rule. We are all unique and, as such, we all will have different responses to diseases and treatments. Of course, this kind of survival doesn’t happen nearly enough (otherwise statistics wouldn’t be so scary), but I truly hope to see more of us experience these kinds of out outcomes as research and treatments improve and broaden.
Maybe hope is out there
As someone who has PH, I understand how scary it can be to be given a life expectancy or read about it online. Being a young adult and knowing that it is statistically unlikely I will live past my 30s has certainly changed the course of my life.
While I believe it is important to be realistic, I also believe it is important to remember how unique every patient is. Simply put, my future remains unwritten — and that fills me with a lot of hope.
You can follow me at my personal website worship-and-tribute.com
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.