When the Body Whispers Goodbye: What Organ Failure Feels Like from the Inside

4/25/25

There’s not much humor here. Sorry, I had no joke to give for this entry.

I know I have written about what respiratory failure felt like back in 2021. To be honest, I am way past the point when I was trached, and so while I feel like what I wrote still holds true for the most part, the process from beginning to end is much different.

Chronic Respiratory Failure is like you’re drowning and you know you need to get air, but as you keep trying to swim to the surface and take that deep breath of air. The surface becomes more distant the harder you swim. You consciously know you’re running out of time, the surface pulling farther away. Your chest feels tight, and your heart starts working harder, faster as it tries to keep oxygen and blood flowing.  Your lungs fail to work, you can hear your heart beat in your head and ears. Your body starts getting more tired. You can still see the surface, as you fight you continue to sink further away. Your heart beat fades, as you drift and things grow dark forever.

So what does this actually feel like? We’ll start where it all starts, the lungs. My lungs can’t expand to full capacity, so I can’t get enough air in, and with the obstruction, it also means I can’t move the correct amount of air out. While I was hyperventilating and burring off too much C02 to keep up with my body’s oxygen demand, I am now breathing more shallow, slow, probably having period of apnea (not breathing). Trying to breath is like breathing against resistance. My respiratory muscles don’t exist or have the strength to work. This in itself doesn’t cause pain, I’m just aware that it’s happening. I’m certain the next decline is death or respiratory arrest. My respiratory muscles are going to fail completely.

My heart. Why does it have to be connected to the lungs, why is that a thing again? My heart is failing because it’s constantly under stress. My right atrium is enlarged and stretching taking on too much blood, and the right ventricle isn’t pumping effectively and is delayed due to the right bundle branch being blocked. My heart is compensating and doing it’s job, but it is over working itself. The pain started on the right side, it starts as a dull pain but then turns into a sharp stabbing pain. It repeats itself. I now 4/25/25 feel it on the left side of my chest too. It’s like a tight burning sensation as it then glides across to the right side and again the dull pain which quickly turn to this sharp stabbing pain. I’ve woken up in the middle of the night moaning and crying because this pain a lone can be pretty intense.

Now my kidneys. My left will be the first to fail. For those who don’t know I have a compression to the left renal vein. Pretty much it’s a rare condition where the compression squeezes the aorta and superior mesenteric artery (Nutcracker Syndrome – some doctors don’t believe this exists). The pain is very real. Because of the compression and I might be wrong, I’m not a doctor and this is all strictly my theory a lone. If my lungs aren’t working to oxygenate blood, and my heart is shitting itself trying to compensate, adequate blood flow is going to be limited. With a compression, and my kidneys already under stress, my left kidney will fail. The pain is like someone is taking my kidney and squeezing it, it’s a constant throbbing pain. Think of a migraine where you think your head might just explode, that’s my left kidney. My right kidney just aches for now.

I have a headache almost all the time. This isn’t your usual migraine or typical headache that just throbs or aches. It’s like a pressure. You ever drive or take of in a plane and your ears pop, my head feels like that. Like my ears are going to bleed at any moment. It’s throbbing pressure, and my ears have this muffled tone to it, like hearing waves all the time, maybe this is what they refer to as the rushing sensation. If I act like I can’t hear you, that’s why. Mentally I’m still here, for now.

So what symptoms am I feeling currently because what I listed above isn’t enough, right? I am starting to notice it’s getting harder to swallow. Nausea has become a new constant again, and not really feeling hungry. My legs have started to cramp, and I’ve had tingling in my feet and hands. I seem to be cold a lot more lately. My back hurts right around my shoulders. I get tired more easily.

I know these are all signs of decompensation. I’m rare, and I know I won’t’ present like most other patients. There’s really no telling what my body will do. I want to try and stay as clear headed as possible, for as long as possible.

I promised a friend of mine I wouldn’t allow myself to suffer, or be in pain. I’ve lived with chronic pain majority of my life, so pain is nothing. But I won’t make myself suffer. When it becomes too much, I have meds, Richard and an entire hospice team behind me. I’m ok, really. I’m going to be ok.

Just remember find the time to dance in the rain. Hug your love ones close, make a million memories.

-Rebecca