One of the worst parts of CTEPH and CHF together is the swelling and fluid retention. The one single thing I can do that makes me feel better is to keep the fluid down. I do this by taking high-doses of diuretics and restricting my fluid t 1 1/2 to 2 liters of total fluid per day. I’m not 100% nitpicky about the amount of fluid–many days I go over, because I don’t always count broths and fluids in foods and such–but I try to keep it really close to that. Mostly, I try to make sure that more comes out than goes in–if ya know what I mean.

Being sick, you’ll learn quickly that talking about bodily fluids isn’t something to be ashamed of–it’s just a fact of life. We poop and we pee and we sweat and we bleed, and our doctors are quite interested in all those fluids. For me, keeping the output higher than the input is a must. It helps keep the fluid out of my abdomen (which is called ascites) and out of my feet and legs, which can increase my risk of DVT, which can lead to embolism, which is what caused the problems I have in the first place. My hematologist said that one more big blood clot could be it for me–the lungs just can’t handle any more. I’ve got plenty in there all calcified over, so I don’t need to add to them.

CHF, no matter what causes it, itself causes fluid production, which leads to fluid retention in the body. My feet and hands swell, my face swells around my chin and cheeks, my belly swells and the fluid backs up in my abdomen and that makes it hard to breathe. I also get fluid retention in and around the lungs. It’s kind of like having pneumonia, but instead of having the fluid in my lungs pushing out, it’s on the outside of my lungs pushing in–and breathing and oxygenation is tough when that happens.

The last few days, I’ve been dropping down into the upper 70s on y oxygen saturation when I walk just to the bathroom and back. Anything below 92 is bad for the brain, anything below 90 is worrisome, below 87 is where the government things things are bad (where they will approve oxygen), and that’s where my heart rate starts to go through the roof. Then when we get down to about 82, my neck veins start to protrude and throb and my head will pound. My chest hurts horribly anywhere below 82…. when I’m like that, around 76 or 78, my heart rate is usually around 160, and that’s while I’m sitting down trying to catch my breath. It takes anywhere from 2-5 minutes for me to recover–which probably sounds pretty short for you, but try to held your breath for 2 minutes and see how it feels. You can’t do it–I seriously doubt even if you did that you wouldn’t see your heart rate raise so substantially.

But I do. I feel it. And it hurts. And it’s scary. And those 2 minutes or five minutes are a lot longer than you think when you’re going through it.

I carry a pulse oximeter with me everywhere I go. When the breathing gets rough, like when I walk or have to get up and move around at all, I put the oximeter on my finger and I will take slow, deep breaths and ‘blow trumpets’ until I catch my breath. For some reason, when you act like you’re trying to blow a trumpet, you can get you oxygen back up faster. I watch the numbers on the oximeter, and I can see the oxygen saturation going up and watch the heart rate go down, and that’s a visual reminder that I’m going to be okay soon. It helps keep the natural anxiety at bay.

Think of it like this: you’re under water. You can’t breathe. You don’t know where the surface is or which way is up or how far away that might be. You are holding your breath because you have no choice but to hold your breath, but everything in your brain is saying breathe, breathe, breathe… but you can’t. You can’t get a breath in. All you an do is swim and hope you’re going to break the surface soon. But what if you don’t? You’d panic. You’d feel your heart beating in your chest and your pulse pounding through your body, pulsing into your fingers and toes. It’s hard not to panic. And the anxiety that comes from not being able to breathe makes it harder to breathe. It’s a vicious circle of anxiety, trouble breathing, rapid heart rate, more anxiety, more trouble breathing…

I’ve learned not to panic. As long as I have the pulse ox, I can watch those numbers and count.

But the pain, ugh. I can’t stand the pain. And that lingers for a little while.

Right now, I’m a little fluid overloaded, and I know it. I’ve increased my diuretic medication (I take both Lasix and Bumex, at relatively high doses) and I’ve been decreasing my fluid. It takes a couple of days, but the fluid will go down again.

What causes it to happen? Being too active. Being up too much. Sitting in the normal chair sitting position with my feet down for long periods of time. Standing for too long. Not sleeping well or not sleeping at all (and that sucks with diagnosed chronic insomnia–sleep does so much for your body that is good–I wish I could sleep!) causes major fluid retention. Sleeping helps bring the swelling down considerably. Eating too much high-sodium foods or sodium in general. Missing a medication I need. Getting too hot for long periods of time. Travel. Heck, sometimes just being awake and alive causes fluid retention.

But when the fluid load is up, that means blood volume is up too, which means the heart is having to pump more through it and move more volume to move the same amount of oxygen and that puts stress on the body and heart. It also can increase blood pressure–but fortunately, I haven’t had much problem with that. Mine is usually too low, or worse, the numbers are too close together.

Anyway, right now, I look like I’m pregnant, with a big belly all swollen from fluid. It scares me sometimes, because my friend Cat, the one who had CTEPH and a sickle cell problem and died, also had a swollen belly right before she went into the hospital for the last time. I know it’s silly to think that way, but it’s sort of the anxiety/PTSD stuff rearing its ugly head and waiting for the bomb to explode.

I realized today that I’ve been diagnosed with this condition now for 3 1/2 years or so, going on four years. When I first read the statistics on this condition, 6 years was considered a long time to survive with this condition. That means I’m entering the outlier zone for statistics. Really, I’m already there, since my docs keep telling me I shouldn’t be alive. But yeah. Being outside the statistical measures for your condition isn’t an exciting place to be–it’s a scary one. No one can tell me what’s coming next.

I’m weird like that. I like to know what’s coming next.

Or maybe it’s because I fear I DO know what’s coming next. As I’ve said many times in my life: I’m not afraid of being dead; it’s all the dying you have to do to get there that scares me.

But I’m not planning on dying any time soon.

Mostly, tonight, I’m just rambling, because I needed to write and I needed to type and I needed to DO something.

Love and stuff,

Michy

 

PS: Read the link in the post above if you haven’t yet. It’s important to me. It was a good post, I think, but didn’t get many comments, so I don’t know if anyone actually read it. Love ya’ll!