Day 15: my last day in CVCU

Day 15: my last day in CVCU

So much has changed in the days I’ve been in the hospital. I have been in every level of care, in 3 different buildings and like 6 different rooms. Every day, my condition changed and, with that, the doctors’ treatment plan.

Today is my 15th day in the Salem Hospital. I’ve become stable enough in the past several days to be independent within my room and take independent walks around the unit. The CNAs aren’t quite sure what to do with me, because I’m one of a very few patients on this floor who can breathe on my own, let alone walk around!

Regarding UCSD, the doctors here sent them all of my records and imaging and the doctor down there said that she believes my clots – even the huge one causing the majority of my problems – are still too acute; they only deal with chronic pulmonary embolisms. So, she said to wait two months and recheck my ECG and echo and see what my body has done with the clots. If after two months, my body hasn’t been able to break down the clot on its own, San Diego will consider scheduling me for surgery.

In the meantime, I’m being discharged from the hospital today. Sent home. With a clot in my pulmonary artery. The good news is my heart failure has gone from severe to moderate and that I’m capable of walking – slower than the laziest sloth racing a snail – 500 feet at a time. I can’t imagine needing to go more than 500 feet for anything, so that’s probably a good gauge of my function. I’ve graduated from physical and occupational therapy in less than 24 hours after being evaluated by them. I’m independent in the shower – although it’s very very hard on me and I have to take several breaks and consciously move much slower than I’m accustomed to. Everything points to stability and I should feel good about this.

But I don’t.

Or, at least I didn’t two days ago. See, the thing is that I feel safe in the hospital. I have a team of medical professionals right outside my door and they can give me any number of medications when needed and they monitor my heart and oxygen saturation 24/7. I’m hooked to a real-time pulse/ox monitor and it gives me peace to be able to look at that and see the numbers that correspond to the way my body feels; if I’ve just gone to the bathroom and I’m breathing heavily and feel like my chest is pounding, I can look at the monitor and see that my oxygen saturation is relatively good and that I just need to calm down and try to breathe slower to lower my heart rate. It prevents my newly adopted anxiety from getting out of control. So, I ordered a pulse oximeter from Amazon.

This makes me feel safe.

In thinking about going home, I realized that I don’t have the ADL modification tools that I do here. I don’t have a nice huge walk-in shower room with space for an armchair and 16 towels laid out for my comfort. I also won’t have someone to come pick up the things I’ve dropped when I don’t feel safe bending over or squatting down. Luckily, Summer’s momma had ordered some helpful items when she broke her ankle – and unfortunately never got to use them. Thanks to Janna, I am now the proud owner of a shower chair and a grabber-claw-reacher-thingy.

These things make me feel safe.

Finally, now that I’m on a serious prescription medication, I’ve got so many things to consider. I have dietary considerations, such as monitoring the regularity of my vitamin K intake from veggies. I have medication interaction considerations, such as which of my vitamins and supplements are contraindicated in warfarin patients. And, I have lifestyle considerations, such as increase in bruising and risk of internal bleeding and prolonged bleeding from cuts or nosebleeds.

I’m not sure how the whole discharge process goes around here, but as of yesterday morning, the doctors had been talking discharge but no one had been in to discuss my new life with me. I had decided it was on me to advocate for myself and make sure I felt safe. I requested a meeting/consult with the pharmacist, dietician, care manager, and doctor. All of whom have provided me with really great information and have answered my questions.

This makes me feel safe.

All in all, my life is going to be very different, but I’ve got 6 weeks off of work to acclimate to my new life. I’m going to be spending a lot of time going to doctor appointments and having blood work done; but I’m not allowed to work or exercise in any capacity because this increases my symptoms and causes more heart failure – as long as that clot is in place. There are a lot of complications that can occur with my condition, but the doctors are all confident in the fact that I will be safe at home. They’ve assured me that if at ANY time my symptoms get worse, they will immediately admit me back into the hospital.

That makes me feel safe.

It’s going to be a long, long road, but I’m open to learning how to live a completely different life and I’m open to the idea that my previous life just wasn’t leading me in the right direction. That’s why all of this has happened; I’ve got to be spun around and dumped on my ass in order to change my life. So, let’s see where this takes me!

Today, I’m thankful for feeling safe.