I believe that my decline started in February. It was so bitter cold, it hurt to leave the house and I had nothing to do except appeal social security and go to doctor appointments. My pulmonologist referred me to Pulmonary Rehab, but there were no slots available in the classes, so I waited. And my muscles weren’t getting used and my lungs weren’t being challenged. So that set me back compared to how strong and capable I felt when we got home from Mama’s birthday trip where I was using my walker every day, eating clean food, breathing clean air.

Then rehab started and we set goals to lose weight and try to get off oxygen when I am sitting still (watching tv, sunbathing). I started to see how weak my body had gotten when 4 minutes on a recumbent bike was beyond uncomfortable, my breathing was so labored and painful. After a few weeks, I saw myself get noticeably stronger – able to spend 10 minutes on a treadmill, bike, NuStep and arm crank. What I wasn’t prepared for was the volume of oxygen needed to maintain these exercises. Suddenly, even though I’m at 3L(liters) when washing dishes in my home, I need 8L or 10L while walking 2 mph on the treadmill. For those of you unfamiliar with the process, everything in Cardiopulmonary Rehab is monitored. I wear a Pulse Oximeter like a watch and they check my heart rate, oxygen and blood pressure both at the beginning/end and WHILE I’m exercising. If my oxygen numbers are lower than 88, then they increase my oxygen flow until I am back at a safe level.

Then came Spring with pollen like which I have never experienced. Now, I am very lucky in that my allergies are extremely mild and seem to mostly be around hay, so that was only an inconvenience. The amount of pollen in the air however led to a buildup of pollen in my lungs. Around this time my nurses began to hear things in my lungs before exercise: crackles, wheezing, fluid, “the sound of the ocean,” one said. Since those noises directly correlate to my discomfort, I began to have further trouble breathing during exercise and began to cough frequently with a noticeably uptick in my mucous.

After two weeks of this, the Pulmonary Rehab team advised that I ask my doctor for recommendations of treatment, be it a course of prednisone or a medical device to help with mucous. Thankfully, a friend gave me a nebulizer earlier this year, and the rehab folks recommended I try it. What an amazing tool for clearing my lungs! And with minimal discomfort. I was also gifted a very intricate shaker vest that is supposed to shake loose the phlegm but after a half dozen uses, I decided that it was quite abrupt and took up 1/3 of my living room, so I would stick to the nebulizer.

Dr. Lotano, my Pulmonologist sent me for a Chest CT, and I received the results within hours. My lung scarring had progressed to Pulmonary Fibrosis, most significantly in the bases of both lungs, with additional scarring on the upper quadrant of my left lung. Upper right is still going strong, BABY! I was also diagnosed with Bronchiectasis which is basically a never-ending cycle of: scarred lungs make mucous, I try to expel mucous, and whatever is left to irritate the lining will cause more scarring. It’s got a lot in common with The Song That Never Ends.

For the GOOD news: the new diagnosis means that I qualify for another 36 sessions of Pulmonary Rehab. I have already gone through the process and insurance has approved it. So that is a win for both my mental and physical health. The other “potentially” good news (I say it tentatively because I don’t trust the government) is that Pulmonary Fibrosis should qualify me for SSDI as it’s classified as a Compassionate Allowance and will hopefully fast track my appeal. I’m “working” with my local representatives’ office but so far they just made me feel like a nuisance who can’t navigate the system.

The REALITY CHECK is that between the Scleroderma (my autoimmune disease) and Bronchiectasis, my mornings will continue to be a fight with coughing, phlegm and mucous til I make myself sick. I will not be getting off oxygen for the rest of my life. The scarring will continue, and based on how far I progressed from Interstitial Lung Disease to full on Pulmonary Fibrosis, the estimates of 2-4 years is tracking closely with my progress. My oxygen needs will continue to increase and my strength will decrease. I will become dependent entirely on a wheelchair or power chair.

As far as, “how did I even get here?” a few things we DO know: this came on because of a combination of COVID (I had in 12/20 and 12/21 thanks to catering holiday parties) and Scleroderma. I have had symptoms of my autoimmune disease since 2008. COVID being a respiratory illness exacerbated the inflammation in my lungs which began to snowball after I caught a simple cold last August. I will repeat this: this is a combination of environmental and hereditary factors. I did not “make myself sick” unless you count working too much and not taking time to listen to my body. Of that, I am guilty. And that’s mine to make peace with.

The 2-4years can depend on a lot, but one thing for certain- I can’t get sick. You see how a simple cold led to a 3-week hospital stay; another and I could lose much of my remaining lung function. Staying active, being in fresh air, keeping my spirits up- it all plays into healing and strength. Anxiety, depression and isolation are realities that pulmonary patients the world over struggle with. We worry if we can breathe as a constant thought- which makes sense that it would lead to anxiety. We’re isolated because people are uncomfortable around us and all of our equipment, are afraid to get us sick so stay away, or can’t go out because we’re too worn down all of which leads to depression.

I’m going to tackle this thing the way I have achieved most everything in my life: Head On. Based on how I’ve been feeling, what the nurses have been hearing, and what the scans have shown, I feel like I’ve got one more good year in me. Remember, I haven’t yet made it a year since my hospital stay. I love summer more than anything, so I’m going to really push and hope to get two good Go Out With a Bang summers. I’m going to attack my Bucket List and say Yes, And…. to every opportunity that presents itself.

I have so very much more that I want to share with you. My thoughts have been full lately. Expect to see more frequent posts for awhile until I get all of my ideas out. Expect also that I will be changing my tone a bit, as I continue my quest towards being true to myself and not worrying about how other people perceive me. I am aware that may disappoint or even drive away some of you, but ultimately I’m choosing to share my story my way, and I hope that you are ready for the ride.

If you want to help fund my Bucket List dreams, or even just my co-pay for 36 more rehab visits, I’d appreciate your donation more than you know. https://gofund.me/1f9360ab My financial straits are dire, but for such complicated reasons that it will be a post all of its own.