Category: diary

Well, so much for sleep – although I did get some. Woke up and of course then my mind was racing. I’m constantly looking at my labs, then the internet. I read something that upsets me so I shut off my phone. I do this multiple times in the early morning hours and then clear as day I hear “Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him, and He shall direct your paths”(Proverbs 3:5-6)

I cry, of course, but then a calm comes over me that I can’t explain. I do trust Him, and all of this is out of my control anyways. Out of curiosity I decide to look up today’s reading from a devotional that I have a home “Jesus Calling” by Sarah Young. So I type in today’s date and I won’t share the entire message but it starts with “You are on the path of My choosing” and ends with “As you give yourself more and more to a life of constant communion with Me, you will find that you simply have no time for worry, thus you are freed to let My Spirit direct your steps, enabling you to walk along the path of Peace”. That is all I need to hear – Thank you Lord!

My husband and son come to spend the day with me. I am told my biopsy will be at 4PM and they will come around 3 PM to get me. I am evaluated by PT and OT. OT suggests sitting for my daily activities as much as possible to conserve energy and recommend a shower seat.

My middle child makes it in before my biopsy, I’m glad she made it in. In the endo suite I’m trying my best to stay calm – I know I’m in God’s hands. I find anesthesia just so strange, as they start it everything goes black but I can hear them talking..for a minute and then I wake up, just like that, still in the endo suite – the nurses are cleaning everything up and someone takes me to recovery. In recovery, I am very uncomfortable-it takes approx an hour for me to be able to KEEP my eyes open. Then nurse is getting ready to release me back to my room and then….projectile vomit-almost hit the nurse who was at the foot of the stretcher – happens two more times. Oh, I feel so bad that I did that, but now I feel somewhat better. The ride back to the room must aggravate something because by the time I get to my room my lungs are BURNING! The transporter wasn’t exactly gentle either. I hurt so bad, I’m crying. My oldest daughter arrives. I’m surrounded by my family, I don’t know what they are thinking or feeling right now but I’m glad they are all here with me. It doesn’t take long and the pain subsides, now we just pray that they got enough tissue to do the test. I’m kind of still holding out hope that it’s just caused by Covid and that I just happen to also have an autoimmune disorder.

My sister in Washington state checks in on me – she has lupus and scleroderma. I have a feeling she will be leaned upon a lot by me in the coming weeks/months if the rheumatologist confirms my fear.

Still waiting on a bed at the bigger hospital but I’m not surprised. Dr continues to dig into other autoimmune disorders too – 7 vials of blood today – I’m just glad my veins have decided to cooperate, unlike the first two days. I also finally got an oxygen tank so that I could walk the hallways some

The bed for the other hospital became available at 4 PM, I was transferred by ambulance and arrived around 5 PM. Within an hour I was seen by the admitting physician there and the lung dr. They have placed orders for rheumatology, but I don’t think they come to the hospital, but maybe by some miracle it will happen.

The lung dr has decided with just a bronchoscopy biopsy, he feels an open is too risky at this time given my “unknown” autoimmune status and he thinks he can get the tissue he needs with the bronch. Hopefully they can get this scheduled for tomorrow, but this is Sunday evening so I’m not expecting anything.

I am on the unit at the bigger hospital where I use to work and also served as an assistant nurse manager. Tonight’s charge nurse has reached out to the nurse manager, and they are going to move me to a private room when the patient that is in that room discharges. What a blessing this is! Now my children can also come without feeling like we are taking over the entire semi-private room I was in. Now to try to get some SLEEP!

Today I am greeted with “Congratulations!! You diagnosed yourself” – YAY??, not exactly the kind of thing you want to be right about. So today after more Q&A and discussion we are going to run MORE antibody tests as it’s possible I have “overlap” or more than one autoimmune disease and we are going to be transferred to a bigger hospital for an “open” lung biopsy as it is preferred over a bronchoscopy one.

I have my stress test but it’s done with just medication as I can’t tolerate activity long enough to withstand the treadmill.

I notice I’m starting to cough again today without the steroids- I’ll be glad to get back on them. I’m also started to get tired, I haven’t slept well in days. I’ve had several breakdowns. I’ve cried in front of both of my girls – I’m concerned for them.

I’ve also done a lot, and I mean A LOT of searching – SLE, ILD- and I don’t like what I read. And I’m not talking just random Google searches, I’m talking scientific studies. The scarring (fibrosis) in my lungs is irreversible – and apparently somewhat progressive – but how quickly? In the alone hours I am beginning to realize that I am facing my own mortality. I began to think about my husband. All of our married life we have prepared for and talked about, sometimes joked about me living 20-30 years without him given out families histories. The men in his family die in their 60s, my family live well into their 80s/90s for the most part. Now it may end up that he will face retirement without ME. I try not to bring it up but I know it’s a great possibility and we are NOT prepared.

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!