Author: Carol

7th – Another horrible day – maybe my adventure out yesterday was too much, or it’s this prednisone – either way, something kicked my butt! I was able to shower earlier today before this all happened and it wasn’t quite as clumsy as the first time I used the shower seat. It’s awful that I’m going this long between days taking a shower, but it just takes soooo much energy. Fortunately and unfortunately, I think I’m beginning to get used to the small changes I need to make.

8th – Last day of this higher dose of Prednisone so hopefully the last day of feeling bad. It’s hard to explain what happens when I get these, what I call “Prednisone moments” – I feel kinda loopy, jittery, nauseated and my heart is beating so loud in my ears – it lasts about an hour or so and it happens 3 or 4 times in a 24 hour period. Rest is about the only thing that I can do until they subside.

I did get out my old keyboard just to see what I remember – not much but it will be a work in progress I guess. Just trying to find something to keep my mind occupied on something other than all of this!

9th – Cut the prednisone in half today, did seem to feel somewhat better as far as side effects – I suppose it will take a few days to wear off. Learning to eat as clean as possible but I’m starting to want sugar. I think that’s my biggest obstacle so far. I walked again today off of the migraine medicine. My oxygen was better, but distance is still terrible, not even a fifth of a mile in 6 minutes. I’ve been doing a lot of reading and it seems that the goal for anyone with pulmonary hypertension is to be able to walk 440 meters in 6 minutes in order to have a better prognosis – I guess I’ll need to do some type of conversion from metric to miles or feet so I know what I need to work for. I mean, I hope I only have a mild case of pulmonary hypertension but the more the days go on I seem to realize that my health is definitely worse than I thought.

I ventured to the grocery store and Dollar Tree today with oxygen and a mask on. The small portable tank in the carry case is heavy but it fits in the child seat so no biggie. I need to continue this complete overhaul of my diet, but I don’t have the right types of foods at home. I’m trying a low sodium, low fat, anti-inflammatory diet. So far, I’ve done well-I think?? for the week. I do cheat however and buy myself a Sparkle peanut butter cream filled donut. I intend on going to the lake-it has always brought me peace.

As for Dollar Tree, I need wrapping paper for my Christmas gift project. It’s strange that in January I started buying/wrapping gifts. My intent was one a month so at Christmas 12 gifts for each person. I wonder if this was also God-many months ago.

After I complete my shopping, I do visit the lake, I indulge in my donut that I absolutely love. I won’t make this a habit but I AM going to enjoy this every now and then.

This was taken in February of 2024 but thought a picture of the lake would be a nice touch. I don’t have any of the donut, they don’t last long enough! haha

Today was a rough one. I attempted to walk my driveway but even WITH my oxygen on it was dropping into the low 80s – it hit76% at one point. I think it’s coming from my medicine I use to keep my migraines at bay, Propranolol. It’s a beta-blocker so it doesn’t let my heart rate to accelerate enough to keep up with my body’s demand. They had stopped it in the hospital, but I had asked the hospital dr if I could at least do every other day because I HATE migraines and this has worked so well for me. But I like oxygen more, so I think I’m going to stop on my own for a few days and see if that helps (disclaimer-I do not condone individuals stopping medications without discussing with their physician).

“May the force (fourth) be with you” – Sorry – Star Wars joke!

Today I ventured out on my own, it wasn’t so bad. I went to see my parents first – I haven’t seen them since before my hospital stay. I’ve spoken to Dad a few times on the phone – explaining things as best as I could without getting too emotional. My mom has such short-term memory loss I don’t know what she knows. I break down as soon as she says, “How are you doing?” A simple question but coming from my mom brought me to my emotional knees and I am her baby again, her middle-aged baby who just desperately needs her parents.

Through tears I share with them the events of each day of the past week along with sharing each day’s passage from the devotional. I know my dad will understand as he has been brought to the brink of death four times…But God!!!

Next, I go to the hospital where I work to see my co-workers and to print off needed medical leave paperwork. My co-workers are a beautiful group, mostly women with the exception of one male social worker. Supportive people who are praying for me. I don’t know what the future holds for me work wise. I suppose some of those answers will come when we have a better understanding of how fast my lungs will deteriorate. Another bridge for another time.

1st day home with what looks to be my new normal- for now anyway. I have plenty to keep my mind busy – making Dr. appts, navigating new medications and treatments. I’m obsessed with checking my oxygen levels with everything I do. I can’t believe I’ve been functioning if this is where they have been. How on Earth did I just walk Charleston, SC a few weeks ago? I also have to wonder if our anniversary trip set off some kind of lupus flare that I don’t recognize because it’s all so new-if I even have it-but it’s definitely looking that way.

The rest of my oxygen is delivered and my house now looks like the home of a sick person. Medical equipment, supplies, medications, hospital papers, cards and flowers everywhere – and I’m reminded of my sister, D. She’s the one who died because of lupus. She fought hard for 20+ years, having gone thru dialysis both peritoneal and hemodialysis, kidney transplant, rejection, back on dialysis, open heart surgery just to name a few – and not to mention the psychotic breakdown caused by her medications. So, reality sets in again, that now is the time to find my strength, “put on my big girl pants” and face this thing with everything I can muster.

My oldest brings me lunch and stays the afternoon, working from her laptop. I wonder what my children think-seeing their mother weakened both mentally and physically. I wonder but I’m afraid to ask- I don’t know if I could bear to hear the answer right now.

At some point in the day I begin to read the passages from “Jesus Calling”, (the devotional by Sarah Young I spoke about in an earlier post). I start with April 26th, the day I decided to get checked out. I won’t go into detail but each day was written for me on exactly that day. God is the only explanation!!! I have to share these with someone-it’s too “in your face” to not share what God is telling me. I have my husband read them, then I send them to my oldest daughter and my two sisters and finally to a co-worker who is also going thru some medical issues – I wanted them to witness God in my life and I wanted the co-worker to feel the same peace I was feeling that it’s all in His hands.

P.S. I will post the “Jesus Calling” daily readings to Faith for those interested in reading them

My husband and I in Charleston, SC celebrating our 30th anniversary, I don’t know how I walked it – The next day we did Savannah, Georgia by trolley – much easier!

This should be “Going Home day”. Dr comes in around 9 am and confirms that I can as long as the lung dr clears it. I go down for pulmonary functions tests. These will serve as a baseline I guess, see how well I can inhale/exhale. Later tests will be compared which will show stability or progression.

The lung dr does his rounds a little later in the day. I can tell by his demeanor that it isn’t good. The PFTs show that I only have about 50% lung capacity and because of all the scar tissue I have a diffusion problem, meaning what oxygen I can take in has a hard time getting into the blood stream – oh, and I have asthma. Great! He also says that I need to see the heart doctor for a heart cath because I bled more than expected so there’s a good possibility that pulmonary hypertension risk is probably worse than what the echo shows. BUT here’s an inhaler-maybe this will help-

Yeah, thanks for the death sentence Doc.

Needless to say I’m overwhelmed but at least I’ll get to go home – with oxygen, a nebulizer for breathing treatments twice a day, an inhaler, prednisone and now I get to take showers sitting in a chair.

YAYYY….NOT

My oxygen gets delivered around 4 pm and we head home. I take a shower, sitting in my shower chair with oxygen on – this is SOOO weird to me, but it feels so good too. My middle one made dinner while I was in the shower. What a sweet child

I sit down and open MyChart, I go to the lung dr notes from today as they weren’t in their earlier and I read “MAY NEED EARLY LUNG TRANSPLANT REFERRAL” and I LOOSE IT – all of the emotions from the week flood me and I stand there in the kitchen and CRY, and not just cry, it’s a SOBBING, uncontrollable cry and all my husband can do is hold me. But in that moment that is all I wanted.

After what seemed to be an eternity I think about it from another perspective – this actually would allow me to live. A new set of lungs, not damaged by Covid – or lupus – or whatever this thing is that is robbing me of air and of life right now.

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.