So that is me, looking a bit Hannibal Lecter-ish wearing my full faced BiPAP mask. I have had breathing issues my whole life. As a kid, I had severe asthma and allergies, and medication only made it worse. I was hospitalized dozens of times in my early teens through my twenties. I even lived at National Jewish Hospital for a couple of months of my young life. It was a very traumatizing ordeal, but that is a story for another time.
A few years back, when I started feeling short of breath just doing regular chores around the house, I didn’t really think much of it. I just thought it was part of my asthma, but it kept getting worse. I really wasn’t wheezing , but coughing and out of breath. After coming back from a trip to Boston I started having real problems. My lung collapsed from a pleural effusion. I was also having trouble with my ankles, knees, and finger joints aching and swelling all the time. I was diagnosed first with Rheumatoid Arthritis (RA), and then with Interstitial Lung disease, specifically NSIP, or nonspecific interstitial pneumonia, which is a form of pulmonary fibrosis. There are a lot of initials involved in my illnesses, so try to keep up if you can. If you are going to have to have pulmonary fibrosis (PF) , I’ve read NSIP is one of the forms with a better prognosis.
Any form of PF is bad; there is still no cure or real treatment, but I have a chance of living longer with the NSIP form of the disease. I have had two courses of chemotherapy hoping to slow the fibrosis, without much success. The cold hard statistics say the average IPF patient lives 2-5 years past diagnosis, where most NSIP patients live over 10 years. It’s much more vague for NSIP. I like vague.
The only treatment is oxygen, and eventually a lung transplant. If you’ve ever looked at the statistics of lung transplantation, which I don’t imagine most people would have, you’d know it’s not an option you want to rush into. They tend not to be as successful as other organ transplants, for various reasons, and in general , don’t last as long. Again those nasty statistics, only about 50% of lung transplant patients make it five years, but things do keep improving. Lung transplant is something I don’t think I will have to worry about. I soon found out it wouldn’t likely be an option for me. After some testing, it was found I have alloantibodies or antibodies that make it less likely for me to successfully retain a transplanted organ. My body is set to fight everything, including itself, so it’s not likely to accept a lung.
So the last four years I’ve lived attached to an oxygen hose to keep enough oxygen in my blood stream to support the rest of my organs. Around the house, I have a 50ft hose attached to a machine that concentrates oxygen. When I’m out I have tanks or a smaller portable machine. The only time I can really take it off is if I sit perfectly still, and even then my levels will sometimes go too low, especially if I’m having a bad day. I sleep with that mask you see above (or a smaller nasal kind). It’s hooked up to a BiPAP which is like a noninvasive ventilator. It seems with all the years of breathing problems, my brain forgets to tell me to breathe when I’m sleeping. It’s called central apnea, versus the more common obstructive apnea. I have a little bit of both, just lucky I guess.
For the most part, I do try to live my life as normally as possible, but everything changes when you are chronically, seriously ill. No matter how hard you fight for normality, normal has changed. You just have to accept that this is your new normal, and get on with living. Pity parties do happen, and some days I will wallow in it, but for the most part, I can truly say I’m just happy and very grateful to be alive.
I really don’t know exactly what I’m going to write in this blog. I really don’t even know how to write a blog, and I don’t read many, but I know don’t want it to be all about the lungs and illness. It already occupies too much of my life. I write poetry occasionally (of dubious quality) , love taking landscape photos, love my six (yes six) dogs, and my family, so I imagine there will be plenty of posts about those things as well. I guess we will just have to see where it takes me.