There Will Be Bumps

What I said on New Year’s Eve at the end of last year was:

“What I’m hoping for in 2024, is really, really the opposite of this year. I know the beginning of the year isn’t going to be enjoyable for me because I’ll need to recover from this port infection and deal with the PICC line. Then I still need to have more surgery… In March. But knowing that, I want to handle those things and look forward to after them. I want to get better and be better physically. And braver too…”

That’s what I wrote in my New Year’s Eve blog post. I had let things get out of hand because of my fear and I wasted all of last year. So this year, I promised myself not to let that happen again. I promised myself to be brave, and I promised myself to fix some things. It took nearly two years for me to get in to see a gastroenterologist since we moved back home to the Boston area. I’ve written about the chain of events in past posts so rather than rehash: some things just happen. But I did get in there.

So this appointment was to talk about my TPN. I need TPN. Like, my GP wants me to have TPN. The entire Interventional Radiology department wants me to have TPN. I keep needing to have surgeries to replace, exchange, or repair my feeding tube site, and this is happening on average every two to three months. It’s not supposed to need repair unless there’s a significant problem, and you shouldn’t need a tube exchange for at least every six months. I have never managed to go an entire six months. I just never have made it. Getting TPN is a process, though. I have been referred to more departments and hopefully those departments will help get us started on the TPN. It’s not an instant thing. That’s OK. The important thing really is getting to the right place, which hadn’t happened yet.

Unfortunately, or fortunately, I don’t know which yet.. My new doctor has the device you need in order to check on my stimulator. He can’t perform surgery on my nausea device, but he can check battery level and go up or down on the stimulation I receive. We hadn’t expected that. Well. He discovered that my battery is completely depleted though. And the only way to fix the battery is to entirely replace the device, it’s not rechargeable from the outside.

The thing is. I had been extremely nauseous lately and it all started maybe a month ago, but it’s only been getting worse and worse. I mean, it has been getting pretty severe. It has gotten so severe, in fact, that I mentioned to Master Pravus “Maybe we need my device checked?” and he said “You’re probably right. But who? Where should we go?” And I had no answer to that. So I just dealt with it, but it made it harder to do things or get around. After all: nausea makes everything so fucking hard. So, good that this new doctor can look, but. It’s not really a matter of increasing the stimulation now. I need surgery to get a new device installed.

This puts me in a very poor position because there isn’t anyone in my state that can do this surgery for me. And, I think it requires an overnight in the hospital if you’re of average risk. I am a high risk anesthesia patient so usually they keep me longer which would complicate things. The closest hospital that can do it is in Connecticut, but there’s only one doctor there who can do it and if that doesn’t pan out it’s New York. I have absolutely zero idea for where to start to go about getting this orchestrated. It’s a lot a lot. And the worst part is that with the stimulator not running, I am so sick and trying to navigate this is even harder. I can’t even imagine. The stimulator gave me the ability to run my life at a very slow pace. But without it, it feels like everything is hard, even drinking clear fluids is so much harder and I don’t feel wonderful.

After I figure out who is going to do this surgery, I have to get the surgeon to get my insurance to pre-auth the replacement of the device. Then I need to figure out getting to this mystery hospital and all the trimmings. It’s a little overwhelming. Couple this with the fact that I have my hernia surgery coming up in a little over two weeks, and it doesn’t make much sense to move that theoretically because I have no idea when this other surgery could even happen. Better to be healing from this hernia surgery probably.

But, the thing is. The Enterra device is going to be more time out, and I don’t know when it will happen. Like, I have absolutely no idea. Without it, I’m so much sicker, so I really do need to figure it out and get this done. I mean, I hadn’t planned on this at all. And I’m not particularly happy about this. Theoretically, maybe it is better to get this done now rather than to have to have something happen next year. But I also know nothing is guaranteed and there’s no promises I won’t need anything next year.

I guess what I’m saying is: This sucks and I’m really upset about it, and I don’t know what good will come out of this year now. I had hoped that if I got the hernia dealt with that I could slowly start getting back to my life, and things would start turning around for me. And I’m not really saying that won’t still be true, and I’m also not saying that this is the anchor that will tank me or destroy everything I am working on. I’m just saying that it is another abdominal surgery I hadn’t planned on. And it’s not even a simple thing that I have any real idea what I’m doing with. I don’t. I don’t know how to figure out an out of state surgery. This is hard. I’m trying to break this down into tiny pieces and figure out what to do. But honestly. Why aren’t there more surgeons who handle this stimulator? ::Grumble::

I feel frustrated. On the one hand, I have eagerness to do The Things. But on the other hand: I can’t figure out how to get back to doing those things. And I can’t quite see how to get there. I know the path ahead is on the other side of this stimulator surgery, and I know that will happen. And I know I will figure this out. But it’s confusing, and hard, and right now? There are bumps.