Life After Sepsis
Last updated: April 2023
When you are in the hospital, all you can think about is going home and crawling into your bed, putting on your clothes or jammies, and loving your pets. You never think about how you will feel once you get home. Especially when there is so much to be done at home once you get there with frequent doctors appts, home health visits, IV antibiotics, and more, but when you've gone through an experience as I did, everything at home feels much different. But before I could go, there were a lot of things that had to fall into place.
About 3 days before I was discharged, we started planning. Which IV pharmacy and home health company would I like to use? As well as if I would go home alone or go to my parents for a while. I was going home but had to remember that I wasn't healed. I was just "well enough" to go home. We also had to figure out what kind of long-term line would work best for me, which turned out to be a pain.
Reality after the hospital
Finally, on the day I was discharged, everything fell into place. The company sending me my antibiotics came in and showed me how to give myself the medication. After that, I finally got a tunneled catheter placed to get meds at home. Honestly, that day was such a blur. Partially due because I was still super short of breath with any exertion, having chest pain, and just felt awful. But home I went.
Processing the severity of sepsis
Once I got home and had time to start processing everything that had happened, I cried on and off for days. When I was in the hospital, I couldn't process what was happening. Once I got home, memories started returning, and it all hit me. Just how close I was to truly losing my life. It's only been 3 and a half weeks since I came home; I still get emotional if I think about it long.
On top of dealing with the up and down emotions, I have to do my IV antibiotics 3 times a day and will continue doing so for 6-8 weeks. I had to ensure that I remembered taking my anticoagulants twice daily on top of my regular medications. As well as taking care of me and my pup. Even walking across my 800-sqft apartment was hard and would increase my heartbeat and make me short of breath.
My mental health and lupus
Tuesday will be 4 weeks since I went into the hospital. I am still pretty down and a bit frustrated with my body. I still get super short of breath with very little exertion. Walking the dog a very short distance makes me very tired. And many days, I can sleep 16-20 hours a day. I really felt that at this point, after 4 weeks of antibiotics and anticoagulation, I would start to feel more like myself.
Maybe the most frustrating part is (you probably guessed it) my lupus. I haven't had any treatment since December. Now that I am on antibiotics 3 times a day, I can't be on anything besides prednisone for my lupus. For me, prednisone is a double edge sword because it does help. But it can also cause my adrenals to slow down or stop working. It truly is always something.
I've always felt lucky because I've had it much easier than so many, and I was so grateful for that. But you never know what's around the corner when you have something like lupus. But you never expect an ER visit to end up as this one did.
The struggle continues
If I can be totally honest, I'm still struggling. Physically is expected after everything that's happened in the last month or more. I suppose struggling mentally and emotionally is also normal. But I try not to admit it too much because I don't want them to worry. Those closest to me, mainly because they have their own feelings and emotions they are dealing with.
I am slowly slipping into depression and still find that I'm emotional when discussing what happened. I talk to my therapist routinely, and per her recommendations, I journal as often as I can to try and get these feelings out on paper and out of my head. I've also turned back to God because he (and modern medicine) saved me.
You never expect to go through something like this and have no idea how you will handle it. The best advice I can give is to take it day by day because that's all we can do.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?