Author: Carol

Today’s my birthday! I am showered in love. My family and co-workers have lined my windowsill with birthday cards, flowers and candy.

Many things have happened today – First off, my ANA is positive – and the CT scan of those pulmonary arteries didn’t show an embolism but it did show possible interstitial lung disease. I tell the hospital dr that my CT scan from last April showed that too but my primary didn’t repeat the test, only a follow up chest x-ray to see if the pneumonia had cleared – which it had.

SO, today I am what I refer to as an onion, apparently I have layers. More blood tests, consult with heart dr, consult with lung dr. And somehow, again God has intervened and they basically see me at the same time. And they agree that this is predominately a lung issue and not a heart issue. The lung dr states most likely brought on by lupus – and there you have it folks. The dreaded 5 letter word to me. OK, so now what?

Heart dr orders a stress test in the morning just to rule out any possible heart issues. In the meantime, the lung dr states I will need a lung biopsy so I will need to come off of the steroids. They also have to take me off the medication that I take for my migraines because my heart rate dropped into the 40s this morning when I was up in the bathroom. Oh boy! The two medications that seem to help me the most and now I won’t get either of them.

Otherwise, my birthday was about as good as can be expected for being hit with the same possible diagnosis that killed your sister!! But my loving husband, my two daughters and son-in-law have kept my mind somewhat distracted. My son hasn’t been in yet, but this is his usual day with his girlfriend and I’m sure he doesn’t want to see me in the hospital anyways.

I’m still dropping into the 80’s oxygen wise just walking between 50-100 feet and my heart rate is still elevating which is normal but it’s like going up by 50 beats per minute. I spoke with admitting physician and he has agreed to check an ANA given my family history and the fact that this is more chronic than it is presenting. He has also decided to check for Covid-19 antibodies and get some more images. He doesn’t seem too convinced that it’s anything more than allergies or long covid, but at least he listened and we can rule it out hopefully.

Blood work gets drawn and CT scan of sinuses is completed. Sinuses return clear – I am NOT shocked. I don’t feel it’s allergies. I haven’t completely ruled out long Covid but I’ve always tested negative so I will be a little surprised.

Later in the evening I go down for an echocardiogram that was ordered the evening before. No sooner do I get back to my hospital room and they come get me for another CT scan-this time it’s for my pulmonary arteries. Checking for an embolism even though my bloodwork came back OK for that yesterday, BUT that’s OK – he’s digging, the Dr is digging! The IV steroids are giving me some relief I think but my blood sugars are getting higher, my skin is so hot and dry and I am peeing every hour!

Something Isn’t Right

One week into this “journey into the unknown” I have this compelling feeling to start a diary or journal, whatever the correct term may be.  I’m not sure of it’s purpose yet – maybe just a way to get all of these thoughts and emotions out.

I will say that although these writings will begin on April 26, 2023, my journey began much earlier; in fact, as I think back on things I believe I am already several years in.

April 26, 2023

I have finally decided to get checked out. I have been dealing with a cough for years – just a dry cough for the most part – I find it most annoying in the morning and when I lay down at night.  It keeps me from doing simple chores like the laundry and vacuuming; climbing a flight of stair will make me cough and be short of breath.  Today at work I didn’t feel any different, but I could feel my heart POUNDING after a simple walk from my office to the nursing unit that I work on.  Checked my pulse and it was 130, out of curiosity and decided to check my oxygen saturation – 85%!…..WHAT?!  I would have never guessed I was that low as I didn’t feel lightheaded or any different than I have felt for a while – which that itself was scary to me.  Have I been like this?  This oxygen deprived, and if so, for how long? I checked myself throughout the day, called my primary care physician who suggests urgent care – go there, they do a chest xray and recommend I go back to the hospital where I work and present to the ER, she states there isn’t anything she can do for me.

I present to the ER, they run several tests as expected but it isn’t until the physician’s assistant walks me around the ER for a lap or so that they decide to keep me for further observation. (Thank You, Lord – I have their attention).  I am seen by the admitting doctor’s nurse practitioner, started on antibiotics and steroids – the same ones I have had twice in the past year for similar episodes, one in which I passed out.  I am OK with the meds but deep down I know it’s more and this will just be another “quick fix” – a band-aid to a bigger problem.  I decide I am going to ask for an ANA from the admitting Dr in the morning as God has placed the right person on my path.  You see, I work as a nurse care manager at a local hospital.  It’s kind of hard to describe quickly what that entails but let’s just say I mediate the care for the patients, making sure they get the care they need while also keeping in mind the resources and financial aspects of all.  Anyways, in this particular line of work we work closely with the admitting physicians.  He is exactly the dr I need right now, someone who will listen to me when I describe that my issues have really been chronic and that my family has a history of autoimmune disorders, especially lupus.  I’m hoping he will at least get the ball rolling so to speak.