As a person who has Pulmonary Fibrosis and is an advocate for spreading awareness of the disease, Dan Mathis shares his frustration of its impact upon his quality-of-life as well as the type of care received from the medical community...
I hate Pulmonary Fibrosis. Have I told y’all that? The doctors will not operate on my hips because of the Pulmonary Fibrosis. The pain doctor will not treat my pain with the medications it will take to help –because of the Pulmonary Fibrosis. He says he is afraid of me because I have Pulmonary Fibrosis. What is a person to do? What? Go to the ‘street drugs’ to get relief? What? Go ahead and go into hospice in order to get help? What? What? What??? ~Dan Mathis
Dan's concern is not an isolated incident. There are many folks who do not qualify for a double-lung transplant in order to save their lives. Whether due to their age, other ailments, financial or logistical concerns; or all of the above. Some, such as my hubby, decide that they would prefer to try to manage their disease and live out the remainder of their lives with the quality that they have become accustomed to. I remember when my husband decided not to get a double-lung transplant; the patient advocacy group that was assisting us essentially explained to us that if he was not going to pursue the only viable option for survival, they would recommend hospice. It was the right thing for them to do, although explaining this to my husband was quite difficult.
There are so many emotions that come from the decision making process of going into hospice. Essentially it is coming to terms that the medical community does not believe you will get better or live for more than six months. On the other hand, one will receive all the medications it takes to be comfortable, as that is the primary goal -making the patient comfortable and meeting their current needs. When I discussed this with my hubby, I remember telling him that just because he goes on hospice does not mean there is a time limit on his life, although it would allow him whatever he needs in order to have a good quality of life while he is with us. Such a heart wrenching thing to think about. Thank You, Dan, for allowing me to share this.