Serogroup B Testimony: Chris Brison
This testimony was submitted to the Advisory Committee on Immunization Practices on June 26, 2015.
To the committee:
I wish that I could share my story with you in person but I am happy to be with my daughter, Caitlin, as she undergoes a kidney transplant, seven years after meningococcal meningitis.
Caitlin was an 18 year-old freshman at Middle Tennessee State University and had just returned home from her first Spring Break in Florida. At that time, I worked as an ER nurse at a local hospital.
It was March 9, 2008 and we had been dealing with lots of flu cases.
That’s how Caitlin presented – high fever, nausea/vomiting. But when I found purple spots on her, I rushed her to my hospital where she was eventually diagnosed with meningococcal meningitis.
I sat at her bedside and begged her to live but also felt she had the right to know how sick she was. She was lucid enough that we talked about funeral arrangements. They were the hardest conversations I ever had in my life, but during our talks she promised me she would live and our focus changed to treatment options she might experience (being put on a ventilator, continuous dialysis, invasive cardiac monitoring, etc.). After three weeks in the hospital, she was released. She needed hemodialysis three days per week and physical therapy to learn how to walk again. She also experienced short term memory loss but thankfully no hearing loss or amputations.
In the summer of 2013, she learned that her kidney function had gone down considerably and the conversation began about her need for a kidney transplant. In December 2013, she was placed on the kidney transplant list and we began actively looking for a living donor. She had to go back on dialysis and was operated on November 4, 2014 to have a peritoneal dialysis catheter placed. I’m thrilled that she now has a kidney donor and is scheduled for her transplant this month on June 30th.
Since this is an impact statement I would like to let you know exactly how this has affected our entire family:
- Although Caitlin couldn’t complete college on time, through strong will and perseverance she graduated in May of 2014, 7 years after she started.
- She majored in French and minored in anthropology. Anthropology had been her original major but her short term memory loss made the memorization required for that a significant challenge so she re-thought her career goals.
- She was fortunate to be able to spend a semester studying in France, but she had to find a placement with a family that included a healthcare professional who would be able to recognize and respond to any issues that might arise.
- The medical bills from the time of Caitlin’s diagnosis until now have been high and with the transplant, they will continue to climb.
- I was the sole breadwinner in the family, but during her time in the hospital and her recovery at her initial diagnosis, I was off work for four months. In the years since, I have continued to routinely take time off from work for her care.
- Caitlin wants to work but hasn’t been able to find a full-time job since graduation due to her many, many doctor’s appointments; this will not end with the transplant; aftercare will delay her job search until she is fully recovered.
- Caitlin will always live with the effects of meningococcal meningitis.
- Although Caitlin will be receiving a kidney transplant, it is a treatment, not a cure. She will always live with the effects of kidney disease and while dialysis has its own set of issues, transplant will present her with a new and different set of life-long issues. For example, we know that she will most likely need at least 1 or 2 more kidneys if she has a normal life expectancy.
- Because Caitlin has been forced to endure the after-effects of meningococcal disease since she was 18, depression is something that she lives with and has had to learn to deal with.
- I also believe the entire family is suffering from PTSD to some extent. Every health issue terrifies us; it is like we are all living with the threat of her premature death over and over again.
Caitlin was offered the meningitis vaccine when she started college, but she was only 18 and thought she was immortal and turned it down. That is a decision she has regretted many times over the years (Caitlin tells me, if she had the option to get vaccinated against meningitis B today, she would!). If I had been with her, she certainly would have gotten the vaccine. However, I think that most young adults feel the same way Caitlin did and, without a recommendation, more teens will make the same choice.
Reinforcing the importance of prevention is one of the reasons Caitlin and I are so dedicated to working with the National Meningitis Association. We know that sharing our story can impact lives.
As a healthcare professional, I am able to talk to people about the meningitis vaccine and would love to see serogroup B vaccination become routinely recommended. I still become very emotional when I talk with people about my experience with meningitis but most especially the fact that I had to sit at the bedside of my dying daughter and talk to her about funeral arrangements. No parent should ever have to have that conversation with a child if it can be prevented by a vaccine.
Please do the right thing.
Chris Brison, M.O.M. (Mom on Meningitis)
National Meningitis Association