I want to personally thank all those who called, reached out and left well wishes over the last eight months. It would be great to say that I was whisked away to some foreign land on an exciting new adventure, or that I’ve been at a fancy retreat and spa in the hills of Montana getting whipped into my best fitness shape ever . . . Unfortunately, neither is the case.
Truth is, since March of this year 2018, I started struggling with health issues stemming from a virus that I had in January/February of 2017, which left me with a prolonged cough. The cough was very mild at first and did not seem to be an issue, so I was not seriously concerned. At the end of the day, I was moving and shaking, on the go daily, dancing, having a good time, felt great, and had zero problems, right?
So, during the 2017 Christmas holiday, while I was at home with my family, my cough was obviously apparent to all except me. I was asked on multiple occasions, “What’s up with that cough, Z?”
After a serious conversation with my daughter, I made an appointment with my doctor for early January. After my check-up, my doctor articulates that I simply have an allergy and he sends me home with Flonase.
Believable, right? Wrong!
My cough progressively gets worse over the next two weeks, and I go back to see my doctor, at which point he orders a lung X-ray. No issues found. However, he orders blood work and sends me to see an ears, nose, and throat specialist, where I am diagnosed as having silent reflux. I am prescribed medication to take twice a day for 90 days.
Seems plausible right? Wrong!
I start to lose weight, my muscles begin to get weak, and my equilibrium seems unsteady.
I go back to the doctor in early March, he orders another lung X-ray and identifies pneumonia in my left lung. I am sent home with antibiotics and told I will feel better in a few days, but to get rest. I am a bit frustrated, but it seems credible, right? I mean he showed me the X-rays . . .
I progressively get worse over the next few weeks, I feel extremely fatigued, and I can no longer walk more than fifty feet without falling or completely losing my breath. Mid-March, I head back to the doctor, and he sends me to have a CATSCAN (CT). The CT shows both lungs are now filled with inflammation. He immediately books an appointment for me to see a pulmonary specialist.
The pulmonary specialist reviews my CT and medical history, examines me thoroughly, diagnoses me with double phenomena, and sends me home with two more weeks of a different strand and stronger antibiotic, and I’m told to rest. Double pneumonia, I guess? I see the CT, both lungs filled, and I say okay, I should be feeling much better soon, right?
I go home . . . I get progressively weaker. Nevertheless, I am positive that I will be well soon. By Mid-April, I can barely stand without falling, and I start walking with a cane. My daughter comes to visit, and from the moment that she walks through the door, she is alarmed! She sends a direct descriptive email to my doctors outlining my decline since December 2017. Her e-mail jumpstarts emergency intervention from my doctors. I am quickly scheduled for another CT. It indicates my lungs are inflamed and scarred at the base. A biopsy is ordered to identify a diagnosis for what I might have.
I am sent to rheumatology where more extensive blood work is ordered. In addition, I complete an echocardiogram and an MRI, and a thorough examination of my muscles, range of motion, etc., is completed.
I have an extensive lung biopsy on June 15, 2018, and on Tuesday, June 19, I’m diagnosed with chronic interstitial lung disease (ILD): my lower lungs are fibrotic, caused by an autoimmune disease disorder that attacked them. The autoimmune disease is not identifiable, so they refer to it as undifferentiated connected tissue disease (UCTD). YES, ILD and UCTD . . . “OMG, I Say”!
My shortness of breath, weight loss, fatigue, balance, and muscle weakness are all systemic from the ILD. When you can’t draw oxygen to the lungs, your muscles lack the power to move, therefore limiting your ability to walk. These conditions, ILD and UCTD, are not curable, but they are treatable. So, I started the treatment journey!
I have lived a very healthy lifestyle, worked out weekly, never been a smoker, not a heavy drinker, and if I had not had a strong body, I’d not likely be here to tell this story. It is like God and the Universe said, “Zalise, it is your turn now. Show us how you fight for quality of life living with ILD!”
So, how am I doing, you may ask? Well, after the emotional rollercoaster of not knowing and then knowing, today I feel mentally and emotionally great! Physically, I am at a snail’s pace, literally! But, I am happy to be scooting along no matter how slow. I am focused on doing whatever it takes to feel good again. I’m taking it one day at a time and one step at a time. I am learning how to breathe again, how to walk again, and working daily to build up my strength.
There’s an extensive daily meds treatment in place in parallel with a doctor-to-doctor partnership with UCSF’s ILD and lung transplant clinics to ensure we are leveraging the most progressive and aggressive treatments possible.
I share my story to say don’t ignore the mild signs within your body, whether a cough, headache, or irregular fluctuations with your day-to-day health and push your doctor to LISTEN to your symptoms in order to make sure you get the best assessment up front.
I am acutely aware that my path back is a journey. It will be a process. A marathon. I am prepared. I am determined, as there is no alternative! Right now, I am in a battle pushing, fighting, and clawing my way back to good health. I am on the mend and truly believe I shall dance again! More to come . . .
Be bold and bloom. Be the best that you can be every day, in every way, and at every age . . . even when you’re moving at a snail’s pace . . . be at your best!