Lupus and More Lung Issues

Having lupus means you have multiple appointments throughout the years. Not only with your rheumatologist but with the rest of your care team. Mine consisted of my nephrologist, pulmonologist, oncologist, ophthalmologist, dermatologist, ob-gyn, and dentist. If you multiply that with all the follow-ups, that's a lot of appointments. So when I reached my last visit of the year I was ecstatic!

It was great saying no more appointments until next year! But my body had other plans...

A routine CT scan?

My last appointment was a routine CT chest scan. One of my earliest lupus symptoms were shortness of breath, pluerisy, and chest pains so I see my pulmonologist regularly and also do regular chest CT scans. Based on prior scans I had a cyst developing in my lungs and because it was still small we kept on just monitoring. My initial symptoms of shortness of breath chest pains and pleurisy also resolved once I started my lupus medications and hasn't returned.

But after 7 years, the latest chest CT scan showed that the cysts were still growing and now there were even new ones forming. Because of my Sjogren’s disease and non-Hodgkin's lymphoma diagnosis last year, my pulmonologist decided it was time to take further action. He suggested I discuss with my oncologist and recommended a lung biopsy. I was devastated hearing this news. But also grateful that he was proactive.

Meeting with a thoracic surgeon

I called up my oncologist and had my scans and report sent over to them immediately. An appointment was then scheduled with a thoracic surgeon. I was so nervous going into this appointment. Automatically thinking the worst. So many thoughts ran through my mind. This was all new territory and I had no idea what to expect.

The thoracic surgeon said based on the scans she thought it might be caused by medication. I was taking Imuran and that was an immunosuppressant that could lead to side effects such as this. She also believed that based on the scan it didn’t look like it was cancer. But in my head I was replaying what had occurred during my initial cancer diagnosis. I was young and they all assured me I would be fine when I found that lump last year. It wasn't until I had the biopsy that my lymphoma diagnosis was confirmed. So I was still feeling anxious.

Do I need surgery?

So with the consultation of my current pulmonologist they decided to wait and monitor it again in 3 months. So another chest CT scan was ordered. They also referred me to see another pulmonologist at the hospital where my oncology team was so I could get a second opinion. I also informed my rheumatologist, and he believes it could be my lupus attacking my lungs and didn’t think it was my medication.

After 3 months they will decide if I will undergo a video assisted thoracic surgery along with a bronchoscopy. They said it’s a minimally invasive surgery and because of my age I should recover fast. I'll need anesthesia and they would need to partially collapse my lungs in order to get out the samples. I would also need to stay overnight for observation. She then started describing all the risk involved. They included pneumothorax, bleeding, air leaks, lung collapse, infections, pain, swelling, just to name a few.

After hearing all of this I was thinking how can this be a minimally invasive surgery. It sounded so much scarier. I was really startled by all of this information. My mind was racing all over again. I'm now just praying and hoping for the best in 3 months.

There really is no dull moment when you have lupus and multiple other diagnoses.