Our Health Care System Continues to Ignore our Needs

Please note that I’ll be talking about hospitals and medical-related things. You might want to skip this article if these topics make you uncomfortable or are triggering. Trust me, I understand.

As some of you know, I have a feeding tube in my stomach. There’s a hole in my stomach, and a tube goes down into my stomach. When I eat, another person attaches a syringe to the end of the tube and pushes food through it. I have a feeding tube because several years ago, I was hospitalized for aspiration pneumonia. Everything I ate or drank went into my lungs, which was not good.

The doctors and nurses sedated me, but it had the opposite effect. My body went into overdrive, and I started kicking and thrashing around in the bed. The staff were getting frustrated and therefore decided to proceed. I wasn’t fully alert but wasn’t entirely out of it. I was aware of what was happening and felt everything.

They inserted a scope down my throat and into my stomach to ensure the feeding tube was in the right spot. After that, they made a small incision in my stomach and inserted the tube. When they were done, everybody left the room. No instructions were given to me, and no support was offered. I was terrified and felt violated.

I was already scared, angry, and frustrated about being in the hospital. The procedure and the way I was treated didn’t help.

A few days later, I was released. The hospital sent me home with a feeding tube but no instructions or support. I had to reach out to a medical supply company and ask them to send supplies for my new feeding tube.

I was really mentally and emotionally messed up.

My life took a drastic turn, and I was expected to deal with it and “keep rolling” or “be strong,” as people say. It’s easy for others to say when they’re not going through it.

Fast forward to today. For several months now, I have been struggling with my feeding tube. Sometimes, I feel like bits of food and liquid are going the wrong way. The feeling is similar to the feeling I had before the procedure. At times, I start coughing, which is a little scary.

The other thing I’ve been experiencing for several months is my feeding tube starting to get clogged. For months now, I’ve been telling a specialist that it needs to be replaced. Until a few weeks ago, the specialist told me it was fine.

It still hasn’t been replaced.

My doctor sent them another referral, but I haven’t heard back. If I don’t hear back from them soon, my only option is to go to the ER, which opens up another set of issues.

If that happens, I’ll need to arrange transportation, which is challenging due to not knowing when an ER doctor will be available or when I’ll be ready to go home. On top of that, depending on the time of day, I may need to make special arrangements for my private caregiver to meet me at the hospital, etc.

It really shouldn’t be this difficult to get a simple procedure done. The longer the wait, the worse it’ll be.

On October 2nd, I finally had an appointment for a scan. As part of that scan, I couldn’t eat anything past midnight. The scan involved being “fed” a liquid containing a small amount of radiation, and a machine would scan my stomach to see where it travelled.

Before my appointment on October 2nd, I was told the scan would take 30 minutes, so I booked Para Transpo and made arrangements accordingly. Silly me, right?

Shortly after I arrived at the hospital on October 2nd, I was told that the scan would take 90 minutes, so I was forced to reschedule.

On Friday the 13th, I was able to get a scan.

For the most part, things went smoothly. However, the staff made it clear that they rarely get patients with a feeding tube. Therefore, they didn’t have the proper syringes to connect to my feeding tube. They managed to make it work. It was a bit disappointing, considering they knew I had a feeding tube and I was at the hospital.

What’s the point of having a medical file if nobody at a hospital reads it?

Anyway, the scan was done, and I fell asleep during the 90-minute scan. I couldn’t do anything other than lie there. The doctor told me to “sit still & breathe normally.” Done!

Seriously, though, why do many doctors ignore their patients or aren’t prepared to deal with people with unique needs?

We know our bodies well, and there’s typically a legitimate reason for our concerns. We go to doctors when we need help and “trust” them to “care” for us.

I can’t speak for everyone, but whenever I experience a situation like this, it adds stress to an already stressful situation. As it is, I have PTSD primarily due to many traumatic events in hospital settings. I know that I’m not alone, but many do feel alone, which can aggravate physical and mental medical conditions.

As for myself, I have no choice but to wait and see what happens. I’ll keep calling and do whatever I can to avoid a sudden trip to the ER. It’s stressful.

Before I roll out of here for this week, I wanted to share pics from my appointment on Friday the 13th.

Don’t worry, they’re not graphic.