One year later

April 2nd will forever be etched in my mind as the first day my body let me know something wasn't right. Imagine being in the thick of a worldwide pandemic and coming down with a fever and a distinct tightness in my chest. I almost immediately thought it was Covid, but waited a bit to get tested. It seemed like it took forever to get the results, and in the meantime I quarantined and we bleached the whole house. Finally a negative result came, and I'll admit I was surprised. 

If I had started feeling better I would have of course let it go, but even 6 weeks later I was still feeling terrible. With my 'virtual' doctor appointments he kept saying to take it easy and it will pass. He said it was most likely a false negative and since we were all new to Covid, it would just take awhile to get back to 100%. 

8 weeks... 12 weeks... I didn't know what on earth was going on! Keep in mind that because we, as a whole, didn't know much about Covid, nobody knew how long it was contagious. I stopped isolating myself from my family, but I really isolated myself from any others for MONTHS to come. 

Most of you have followed me through this journey and I'm here today to tell you that after endless testing, and me staying on top of the doctors... I have a diagnosis! Here's how it came about. In October my pulmonologist said he had done all he could to try and figure out what was going on with my respiratory problems, but before "signing me off" he wanted cardiology to do an angiogram to rule out any heart disease. I did that in November. I wish I had figured out how to read my lab results a whole lot earlier, but once I figured out my patient portal I realized there were results for my angiogram that no one had ever called me about. Don't worry, my heart is great! But the cardiologist could see at the base of my lungs some thick mucous plugs and other really technical terms that sounded not good. In fact, it had advanced since my last chest xray in August. The cardiologist suggested doing a rescan of my lungs after treatment. Treatment? Treatment!

After getting over my fury of not being notified of this finding I had the cardiologist verbally tell me what the report said. He put in a referral back to pulmonology and I started back with them in January. When I first called to make an appointment with pulmonology they said I couldn't get in with my doctor until the end of February. I insisted on being seen sooner and had a phone appointment with another pulmonologist soon after Winter Break. For the first time in a long time it seemed like someone was taking me seriously. He asked me a lot of questions and came up with a real plan. Since I've never had a cough throughout this illness he wanted me to try and find a way to break up the mucous build up in my lungs. He gave me an aerobika to use twice a day and some sample cups to collect any sputum I may cough up. Then I was to bring it to the lab for analysis. It took me a good 2-3 weeks before I was able to turn in a sample. Then he said it would take up to 6 weeks for cultures. So much time just kept passing while I waited. 

Now to make the next two months go a little shorter for you than it did for me; the first sample came back positive for a rare disease so he wanted me to submit two more samples to confirm. Finally after what seemed like forever, last weekend I was given confirmed diagnosis of a nontuberculous mycobacterium lung disease. You can look at this website here for a brief explanation of what an NTM infection is and more. My specific mycobacteria is called Mycobacterium Avium Complex, or MAC for short.

I will probably never know how exactly I got the disease, as it is an environmental kind of thing. I could be from contaminated water from anywhere I've lived. It could be something I drank on our cruise in January 2020. It could've been picked up camping any of the times we've done those sort of things. It mostly likely is not Covid related. 

It does explain almost all of my symptoms I've had for the last year. The fever I ran for upwards of 6 months, the difficulty I have exerting myself, even to sing and especially to exercise or do anything physical. The severe fatigue is also a common symptom, but since fatigue is a symptom of so many things it's understandable nothing was caught sooner. I already have lung damage and I don't know if I'll recover anything or just keep from damaging it more. I pray that as I begin treatment I may gain some of my energy back. Chronic Fatigue Syndrome is not an uncommon domino effect of this disease.

So for treatment, get ready for this. After doing a bunch of preliminary workups to have a baseline of bloodwork and whatnot, I will begin what they call the big 3. I will slowly begin taking 3 different antibiotics until my sputum samples start consistently becoming negative for MAC. Once they are negative I continue to take the big 3 for a further YEAR! Most are on the big 3 for 18-24 months! I will be taking clarithamycin, rifampin, and ethambutol. Each have their own special side effects, especially taking them for that long, and I hope I can power through whatever's ahead. I'm almost done with my preliminary tests and hope to begin soon. 

A few mysteries still remain. How did I get it at my age? Most who get it are immune-compromised and have other co-morbidities already. Will I be able to clear the infection? As you can tell by the treatment this isn't your 10 days of antibiotic and all better! It may take awhile. It can come back. What does this mean for my long-term future? Will this affect us going overseas? Who knows. My pulmonologist says no, but the army can say whatever they want! Will I ever get back to the Laura I was before? I just don't know. 

I'm thankful for a direction to move in. I'm thankful for all the support I've had from y'all over this past year. It has been extremely difficult for me as my life did a complete 180. I am slightly concerned about moving this summer, not only for the amount of work involved, but to start over somewhere I don't know anyone. They won't know how I was before, they'll only see this Laura that I haven't come to love yet. I had a priesthood blessing in August or September and I'll never forget how different that blessing felt than any I've had in the past. There weren't words that sounded like I would be better soon. Instead there were words like journey, patience, re-molding myself and much more. Not gonna lie, I haven't much been in the mood for reinventing myself, just trying to get back to how I was. I haven't figured it out yet, but I hope I will. The big thing I've learned so far is not to give up, and don't let the military healthcare system work on their own calendar. They work for me! Sadly, the pulmonologist may never have called me last week if I hadn't been checking my lab results daily and put in for an appointment for him to go over the results with me. Let's get this treatment going!

One year later and we have diagnosis and a plan. I'm anxious to see what I have to write next year :)