Well, it’s back to the drawing board. My career as a lady in waiting was very short-lived!
I am writing this from St. Paul’s hospital, where I have been since Monday afternoon. Timing worked out in my favour and I was able to get started in the home TPN program right away. So far ‘TPN school’ is going very well. I expected to be really overwhelmed by everything but surprisingly I am feeling very calm and confident. The manual I was instructed to read through before coming here states that “any bacteria that comes in contact with the inside of your central venous catheter or TPN system can be a threat to your life” and that definitely freaked me out a little bit. I already knew that about central lines but seeing it in print applied to my own life was a bit different. All in all, though, everything is really straightforward and some of the steps even appeal to the science student in me – such as using a needle syringe to draw up the vitamins and inject them into the TPN bag – it’s like being in the chemistry lab all over again!
Honestly, the most overwhelming part is trying to comprehend how I’m going to schedule the TPN and the tube feeds in the real world. It’s perfectly normal while in the hospital to be connected to at least one line all the time, but it’s a little less practical in the real world. Ideally I would like to try and have an hour or two of freedom a day in order to easily partake in real world activities, notably regular showering, but I would also like to avoid having to carry around two backpacks at once. It’s going to take some time to figure out a routine once I’m home.
But speaking of home, I am likely going to be discharged this Wednesday or Thursday! My PICC line is proving to be rather difficult to work with so I am having a tunneled central line put in my chest on Monday morning. If you google ‘tunneled central line’ you might read that it is a surgery performed under general anesthesia, and while that may be the case some places, that’s now how they do them here. My line will be placed in interventional radiology with local anesthetic and mild sedation – well actually I’m not 100% sure about the sedation part as different people have told me different things. I suppose I will find out on Monday! The doctors say it won’t hurt but I’ve heard differing things about that, as well. Just another thing to find out on Monday!
I cannot wait to get home! I miss my bed, I miss my room, and I miss my bathroom. I miss being able to get whatever I need instead of having to ask people to bring things when they come visit. I miss being able to go up and down stairs and I miss easily walking around outside. I miss being able to take meds on my own and grab whatever medical supplies I need without having to ask a nurse to find me something. I miss my independence. I miss having peace and quiet.
They say that absence makes the heart grow fonder and in this situation they (who ‘they’ are I’m not quite sure) are definitely right. I can guarantee you that when I get home I am going to completely relish all of those things that I miss.
But for how long? Next week will I still be grateful to have the PICC out of my arm and have both hands free? No…I’m probably going to be sore and annoyed that I need a central line at all. Two weeks from now am I still going to be excited that when I want medication I am able to take it right away without waiting? No…I’m probably going to be discouraged that I still feel sick and even need to take medication at all. A month from now am I still going to be grateful that the TPN is keeping me alive? No…chances are I am going to be frustrated that I can’t just eat and live the normal way. Will I always be happy to be home? No…I’ll probably be unhappy that my illness requires me to spend so much time in the house.
We want what we can’t have. We forget how bad things once were. We lose sight of how things have improved and instead focus on the things that are still hard. Things could always be better, but things could always be worse, too. We just often focus on the things that could be better instead of expressing gratitude for the things that could be worse but thankfully aren’t.
I’m not saying that we should settle when things are bad and just be happy they aren’t worse, especially if we have the power to change them. And I’m not saying we can’t be upset over our hardships because that’s not realistic and that’s not healthy. But since there are always going to be things about life that we don’t like and we can’t change maybe we could pick just one of those things and let it go. Maybe we could pick one of those things and reframe our thinking so it doesn’t seem so bad.
For now I pick having a central line. I don’t have to be happy that I need TPN, but at the end of the day, happy or not, I am going to have a central line. And since that’s the case, at least I am able to have my PICC line replaced by something that is easier to handle and maintain. At least I will be able to use both hands and manage it all on my own. At least I will be able to have a little more independence. In that case, having a central line doesn’t seem quite as bad anymore.
Just one thing. It’s not so hard. And who knows, maybe the change in attitude will catch on and before too long life will seem all around a little better and a little easier.
I’d say it’s worth a try.