Living Life with Idiopathic Pulmonary Fibrosis

After being given the diagnosis, I had to take time to ponder the way my life was going to go. I mean, being given a possible early death sentence wasn't exactly the easiest thing in the world to take. I was a senior in high school; I had dreams of going to college, working at a job I loved, helping others through that job, creating my own family. I would like to say that I took it all in stride, but to be honest, I didn't. I was angry at first, and then I was depressed for a while. It took quite a bit before I could finally accept the fact that I had this disease. Now, what I chose to do while going through this was the question.

With this disease, my healthy means more than ever, if I want to live as long as I possibly can. I was prescribed the three general medicines for IPF: prednisone, azathioprine, and n-acetylcysteine. In addition, I had medicines to combat the side effects of these medicines. For me, this disease means that I need to keep up with my medicines as well as keep my body as healthy as possible, in whatever way I can.

My short term goals really haven't changed. I will continue to focus on the rest of my senior year, look forward to graduation, and just live life every single day in a way that I will have no regrets.

As for my long term goals, I still look forward to working hard at college, obtaining my dream job, creating a family. If I am part of the 60%, then these goals probably aren't realistic, but hoping is better than moping a fate that probably won't change no matter how I react towards it.

It does make me stop and think. Not only about the end of my life, whenever that may be, but how I live life now. It isn't easy, yes, but I have wonderful friends and family who have supported and will support me every step of the way and that's a great foundation to be grounded in. I can still look forward to the life I will live and I will still fight--I've always been quite stubborn after all--though it is a losing battle. Having this disease and the looming fear that I could die soon makes me realize that life is a gift. Whenever you feel pain, it's a gift, because it tells you that you are breathing, that you are alive. For now, I will treasure the past but not dwell on what has happened because after all, how I live in my present will determine how I will face my future.

Treatment and Medicine

Doctors may prescribe medicines, oxygen therapy, pulmonary rehabilitation, and/or a lung transplant to treat idiopathic pulmonary fibrosis.

Though there are currently no medicines proved to slow the progression of IPF and there is not quite enough information to support the use of the medicines that currently are used, there are three medicines available.

1. Prednisone: an anti-inflammatory medicine that is usually taken by mouth everyday. It may also be given through a needle or a tube inserted into a vein in the arm for several days. However, prednisone can cause serious side effects and so may only be prescribed for 3-6 months at first.
2. Azathioprine: suppresses the immune system that is also taken by mouth. Because of the serious side effects it can cause as well, it may be prescribed with prednisone for 3-6 months as well.
3. N-acetylcysteine: an antioxidant that prevents lung damage, also usually taken by mouth. A common treatment is by giving all three however, this was recently proven harmful by the NHLBI.

Other treatments include:

• flu and pneumonia vaccines
• cough medicines or oral codeine
• Vitamin D, calcium, or a bone-building machine to help prevent bone loss if taking prednisone or another corticosteroid
• anti-reflux therapy may help gastroesophageal reflux disease

Pulmonary rehabilitation is also available such as:

• exercise training
• nutritional counseling
• education on lung disease or condition and how to manage it
• breathing strategies
• psychological counseling and/or group support (a website including a list of support groups: http://www.pulmonaryfibrosis.org/life-with-pf/support-groups)

Finally, a lung transplant may be recommended if the condition is quickly worsening and/or severe. There are, however, major complications such as rejection and infection.

~

References:

• What Is Idiopathic Pulmonary Fibrosis? (2011, September 20). Retrieved from http://www.nhlbi.nih.gov/health/health-topics/topics/ipf