Tag: Atelectasis

The Scleroderma Chronicles: The Surreal Stumpy Adventure

It’s been kind of a tough month. I had a bad flare and couldn’t knit, I suffered through an annoying 30-day heart monitor test, and then there was Thanksgiving. I’ve been slowing clawing my way back from the flare over several weeks, and finally last week I started to feel pretty much like myself again. I even made several hats on my Sentro knitting machine using a power screwdriver to turn the crank for me.

This actually works better than you would think. 🙂

I pruned and fed the plants in the indoor garden. Gosh, they really look a lot nicer. Look at how nicely the lavender plants cleaned up.

The miniature roses had gotten pretty bushy, and I kept seeing some aphids on the new growth. I aggressively pruned the plants back to remove more than half of the growth, sprayed the plants well with Neem oil, and then gave them some fertilizer. They look somewhat sparse now, but the new growth is good and I’m not seeing aphids. I really needed to get the size of the plants under control anyway as they were getting close to the top of the growing space under the grow lights.

There aren’t any new rose buds yet, but I think that this was a good course of action to manage the aphids. Some of my other plants have started to put out blooms, the African violets being the stars of the month.

So, the indoor garden is looking pretty good, and the difficult month was finally coming to an end. My wrists still hurt, but I was definitely on the way back to “normalish”. I decided to head out to buy a fast-food hamburger treat for myself Tuesday evening. I love these little trips out of the house; each one is a little adventure that really perks me up.

This trip was really something, a surreal adventure that is still playing out.

I had just cleaned out my car (Stumpy) a couple of days before, and before I left on my outing, I gave him a fast little vacuum job and brought in the trash cans from the street. Gosh, Stumpy looked good! I took off to the hamburger joint where I scored my favorite burger, some onion rings, and a chocolate shake. This is a lot of fat and salt, and I was going to have it anyway!!! Did I mention that my server looked just like Dylon on The Great British Bake Off? He gave me a coupon for free ice cream if I completed an online review of the food/service. Yay! Free ice cream!! On the way back I sneaked some onion rings from the bag as I drove past the high school where I used to work. It was early evening, and there was a car parked along the street above the sports stadium and field, the driver packing things into the back of his car. Someone finishing up sport practice, I thought to myself as I went by. Still looking at the school, I remembered how much I loved working there, how much I loved the kids, how much I loved the greenhouse attached to my classroom…

I had to stop at the light at the intersection by the school, and I remember that I was very focused on the oncoming cars before I started moving with the green light because… high school intersection… crazy new drivers… must be careful…

The light changed, I slowly started out, and there was a sudden flash of light and movement to my left as I crossed the intersection. I was hit by a car that had run the red light; poor Stumpy was sent careening across the intersection and ended up dropped onto the median of the street I had been crossing, now facing directly at my old classroom and its greenhouse. Kind of ironic, right? The collusion alert system in the car immediately activated and there was a voice checking on me and calling for emergence responders. A witness arrived soon after to help, and a teenaged girl started directing traffic. The witness was a Lacrosse coach, and I wondered if he was the driver packing up his car when I passed him by the sports field. The fire department arrived with paramedics who got me out of the car (taking my car keys out of my hand and leaving them with the car), into an ambulance, and off we went to the nearest hospital with an emergency department: I had some serious chest pain going and my blood pressure was something else. “Don’t worry,” said the paramedics.” We got your food for you out of the car”. Did I mention that this was a little surreal? “Did you know that you were hit by a Humvee?” Yep. Surreal.

So, I had a great little emergency room visit. I had some testing that determined that I wasn’t having a heart attack, but I did have a couple of broken ribs. The interactions with the trauma physician were kind of hilarious as she didn’t quite know what to make of my CT results… “you have a lot of interesting structures in your lungs,” she told me. “You seem kind of dry… you need to drink more water.” Whatever. It must be the diuretic that my doctors prescribed because they are more concerned about some other things going on… like pulmonary edema… and heart failure… somehow, she focused on the wonky kidney results and didn’t notice the rest. Have I mentioned surreal? I had called my son to come get me home because I didn’t have a car or door keys any longer, and he packed me up and got me out of there at that point. Five hours after picking up my fast-food, I finally started home again with my son, a little wobbly, drugged up on pain killers, and still in possession of my hamburger. I ate a couple of the cold onion rings in the car as he drove through the night…

I’m pretty sure that my poor car Stumpy is totaled.

…and the phone rang. The police finally called. They were with Stumpy, and he was now in the parking lot of the high school where I used to work, right outside the door I used every morning next to my old classroom. We turned around and headed back to the police at the accident scene to make my statement and to get the house keys out of the car. The police officer was wonderful; she was still making her way through all the calls and witness reports, but it absolutely looked like I had been hit by a driver who illegally ran the light. She made the arrangements for the car to be towed and stayed with it for me. I ended up hugging that officer and giving her an audible book recommendation. My chocolate milkshake was in the Stumpy’s cupholder, still cold with the straw in it, and I took it back. Of course I did. As we drove away the officer was doing a search for the book I had mentioned to her. Goodbye old classroom. Goodbye Stumpy car that I loved. Thank you both for all the good times.

Surreal.

Aftermath: My wonderful insurance has stepped up and is handling everything. My neighbors are telling me not to worry about the rental car yet: they will drive me anywhere I want to go. The CT scan at the ER picked up on a couple of issues that I need to follow up on, and I already have new appointments with my doctors to do that: the atelectasis in my lungs is back, and something is going on with my thyroid. Who knows, this all might have been a blessing in disguise.

My wrists are strangely better, and I finished knitting my socks.

Slouch socks!!

My hamburger, when I warmed it up and ate it the next evening, was still delicious!

I found the coupon for the free ice cream when I finally cleaned out Stumpy in the tow lot Friday. I plan to leave a great review…

Stumpy was a 2018 Subaru Forester, and I can’t praise his safety features enough.

The Scleroderma Chronicles: Lung Biopsy Story

Last Monday, May 2nd, was the date of my lung biopsy procedure. My pulmonologist had diagnosed me with interstitial lung disease a couple of months ago and the biopsy was required to definitively diagnose the type of ILD I had. This is kind of complicated, but the simple reason for the biopsy is that I don’t really fit the profile of the usual scleroderma ILD patient, and the treatment is expensive and somewhat risky. Biopsy time.

At 4:30am Monday morning my son drove me through the rainy dark to the hospital where I was going to be admitted for the surgery. I had on my new raspberry clogs for good luck, and I was exhausted after being up most of the night completing pre-op tasks at home. I was fighting off a sense of impending disaster…

Image retrieved online from Wikipedia Commons at https://en.wikipedia.org/wiki/Respiratory_failure

The day I met with the surgeon he drew a funky little drawing on his white board to explain what he was going to do. Check out the diagram above: your right lung is actually different from the left with more tissue and three lobes. My surgeon planned to use special instruments guided by a tiny video camera (VATS) to go through my chest wall and get the tissue samples. This is a minimally invasive procedure that will only take a few minutes. The catch: the right lung will be deflated before he takes the samples.

Atelectasis is the medical term for a collapsed lung. Both of my lungs were experiencing incomplete atelectasis at the time of my last CT scan, and I’d been getting steadily worse all April. I was a little concerned, but I trusted that all would work out fine in the end. I was prepped, bundled up, and rolled off to surgery. There was the most fantastical robotic surgery machine in there, but before I even got a great look at it, I was on the table, a mask was put over my face and I was gone…

… and I emerged from unconsciousness at the bottom of a rugby scrum with all these faces looking down at me. I was in pain, a lot of pain, and I couldn’t breathe at all. The muscles on the right side of my back were seized up and cramped in what felt like Charlie horses, and I was thrashing around as I tried to get someone to rub on my back muscles. The rugby players in masks (I was later told that there were 8 of them) were attempting to hold me down as they put hot packs under my back, removed my oxygen cannula, and placed a larger oxygen mask over my face. “Do you remember the Xray?” one of them asked. Oh. That’s what set off the muscle cramps. My oxygen was below 75% even on highest oxygen flow available in the recovery room. I got transferred to the ICU.

That right lung refused to reinflate. I couldn’t be given any pain medications or fluids until my oxygen levels came up. New doctors began to arrive and talked to me. To be clear, talking set off coughing and was very painful. I just wanted someone to help me, not talk to me! A pulmonologist arrived to doctorsplain my disease to me and informed me that he was changing some of the drugs used to treat my lung and heart conditions. I told him that I didn’t know him, he couldn’t make any changes to my treatment plan without talking to my doctors, and that I needed him to do something right away to handle my immediate situation (I was in acute respiratory failure). He argued about contacting my doctors. I insisted.

I think that I deserve a huge gold star for standing up for myself while in extremis.

I was placed onto a high flow oxygen therapy machine within minutes and my oxygen levels came up.

I kind of look like I was underneath a rugby scrum, huh. That machine delivers heated water vapor and oxygen at the unbelievable rate of 60 liters/minutes. My oxygen came up into the low 90s on the machine and I finally received oxycodone. Yay!!! The last oxygen number on the monitor before I fell asleep was 94%.

The next day they got me up into a chair (more oxycodone!) and I started respiratory therapy to get the lung working again. On Wednesday my chest tube came out and during the day the flow rate on the machine was reduced until I could come off it.

Day three in the ICU. I am off the high flow machine and finally using a normal cannula. I’m still on 15 liters/minute of oxygen at this point.

That annoying pulmonologist came by every single day that I was in the ICU; my doctors had called him back! After talking to them he made some med changes (and told me that it a shared decision) and his manner completely transformed. The physician’s assistant who removed my chest tube told me that she had also read the care notes with all the data, email traffic, and decision-making by my rheumatologist/pulmonologist/cardiologist team. She was struck by the interdisciplinary care that I was receiving and seemed a little wistful and envious.

Another gold star for the team!!

Over the next two days I was slowly titrated down on my oxygen while doing my lung expanding exercises without fail. Late in the morning on Friday I finally escaped.

I put on my raspberry clogs, black leggings, a little black top, and my raspberry-colored down vest. “How cute you are!” exclaimed the nurse. My son drove me home through the late morning light along streets lined with newly leafed trees. While I was in the ICU the world had turned green.

No matter how lifeless and barren things seem over the winter, spring always comes with the promise of fresh starts and new life. I still trust that all will work out fine in the end.

Hannah is so glad to have me home again.

Now we just have to wait for the biopsy results.