Update on MY journey

Blog Post created by elvan on Aug 15, 2017

Yesterday, I saw my pulmonologist for the first time in six months, I had pulmonary function testing before the appointment.  I was really nervous because the results of my LAST testing were dismal, at best.  I don’t fail tests…I am just a LITTLE OCD.  I was sure there was something wrong with their machines.  It was before my surgery.  I remember the look on my doctor’s face.  I kept telling her that I just did not understand why I was so tired all the time and so short of breath.  I had been smoke free for well over a year and I was getting decidedly worse.  I was working out in my friend’s pool and at home and I was trying to do everything I could think of to get better.  There WERE some things that I had not tried because I didn’t know about them…playing a harmonica, it helps to control your breath.  If you are as musical as I am, it will also scare your cats to death.  Blowing bubbles…again, controlling your breath.  As part of my aqua therapy, I had to blow a ping pong ball across the pool and back in water that was up to my neck.  It taught me to take a deep breath efficiently and to exhale slowly and in a controlled way.  The surgery I had in November of 2015, reduced the volume of my lungs which sounds terrifying AND also like it would be worse and not better.  The truth is that the portion of my lungs that were removed was very diseased and trapping air.  I could inhale but I could not get the air out and I was constantly short of breath.  Once the upper lobes were removed, the lower lobes were able to move up to where the upper lobes had been and I really experienced a great improvement after the surgery.  I’d love to say it has continued but, the fact is, I struggle with the shortness of breath and even more than that, I struggle with the fatigue that goes along with it. 

My testing was MUCH improved…except that I am still trapping air.  My pulmonologist said she is sure that my scoliosis AND my rheumatoid arthritis are largely to blame for that and the subsequent fatigue.  She said that the respiratory therapist came running over to her office to show her the results and he said…”Can you believe this is the SAME person?”  The surgery was very successful and I do not have to be seen again for six more months.  She does want to change my inhalers so I will be put on a new one that combines everything into one PLUS adds the medication in BREO…I did not tolerate that well, it set off my asthma.  She thinks that is because I had not had the surgery and really wants me to try this, once it’s available, it has not yet been released.  She tends to run towards the newest things, I am not sure how I feel about that but I will watch my reaction when it is prescribed.  I do not know the name of it.

It has been three years, six months, and four days short of seven months since I quit smoking.  I have no doubt that I would be MUCH worse had I continued to smoke.  I HAVE improved, I was told when I had the surgery almost two years ago that the best case scenario would be improved quality of life for 3-5 years and after that, the only remedy would be a lung transplant.  A lung transplant is also how lungs which are affected by RA is treated.  Because of the severity of my scoliosis and my feelings about accepting transplanted tissue when I did this to myself and the other people who are waiting for good matches for their lungs, I would not be willing to undergo that surgery.  Hopefully, it will never come to that.

That’s the latest, thanks to all of you who remembered and asked.