This guest blog post was written by Mary Jo Crihfield, M.Ed., M.S., CRC, age 33, one of Independence Plus, Inc.’s ventilator-dependent patients. Mary Jo is passionate about helping others, both in her professional and personal life, and wants to spread a positive message to others about living life being dependent on a ventilator.
I was diagnosed with limb-girdle muscular dystrophy at the age of three, and have suffered from multiple lung collapses since 2008. As a result, in December of 2011, I developed a severe case of pneumonia, requiring a tracheostomy and became ventilator-dependent 24/7.
I did not always feel positive about the idea of using a ventilator, and it took me quite some time to adjust to these new life circumstances. I do not remember a lot about the months spent in the hospital; however, when faced with the decision to get a tracheostomy, I vividly remember telling my family that I did not want it to result in the need to have a nurse take care of me.
The thoughts running through my head at the time kept telling me that using a ventilator would prohibit me from living a full and active life, as I had been doing prior to this illness. As a former rehabilitation counselor, I have always been an advocate for independent living for people with disabilities, and my greatest fear was that my independence would be taken away from me.
At first, some of these fears were a definite reality. In February of 2012, I came home from the hospital not having the ability to eat or speak, and spent the majority of my days in bed. I was faced head-on with the reality of all these health changes. I also had a staff of nurses from another agency, but those nurses did not seem to have adequate experience with ventilators, and more importantly, any passion for their job and taking care of others.
Three years later, daily life is now completely different. I live at home with my partner Frank, and rescue dog, Chuck, a Tibetan-terrier mix. With the help of family, friends, and my wonderful new nurses from Independence Plus, I currently live a full and active life. My days are now filled with shopping trips, going to movies, visits with friends and family, eating out, going to baseball games and concerts, managing household chores, and most importantly, trips to the local dog park with Chuck.
My fears back in 2011 are an excellent example of the common misconceptions people have about living life with a ventilator. Most importantly, I feel that healthcare professionals, particularly physicians, do not adequately prepare patients and families for this reality. I think it would have helped me and my family prepare if the doctors had discussed the possibility of using a ventilator much earlier in my life. It is a delicate subject matter to bring up, but also is a reality for many people with muscular dystrophy.
In addition, although my health has improved since 2011, I still face many challenges every day. However, I feel it is extremely importantly for new patients and family members of those using ventilators to not lose their focus and hope for future goals. I know firsthand that it can be difficult to do this, especially during the first year, but with hard work and motivation, a fulfilling life and independent living can still be achieved.
I highly encourage other patients and families to try and reach out to others that are experiencing the same health concerns. One of the best things I did was join an online support group for others with both muscular dystrophy and those with a history of pneumothorax (lung collapse). Making a connection with other people can help reduce the stress, fears, and the feelings that you are alone with these changes in your life.
Although I am currently no longer working in the professional field as a rehabilitation counselor, I am always seeking opportunities to write, educate, discuss, and connect with healthcare professionals and people with disabilities, thus fulfilling my mission towards helping others.
Please share your comments with us below on Mary Jo’s story or your own experience of electing a tracheostomy and/or ventilation.