Eyva Kid Cash (eyvasjourney) wrote,
Eyva Kid Cash

Life with End-Stage Cystic Fibrosis

I started writing this about a month ago and was trying to put a comical spin on what my daily life looks like. Some days are better than others, some are worse. It balances out. :)

On any given day, I take 30-40 pills. Most of these are digestive enzymes to help my body process fats and sugars properly. The others are various vitamins and antibiotics to help stave off lung infection, along with liver medication and psych meds.

I do four to five breathing treatments a day. The morning and bedtime treatments take an hour each, and the others are usually 20-30 minutes. I can't really do much of anything during treatments because I am literally tethered to these machines by 3ft hoses.

My throat is always some level of sore due to coughing so much.

I can't swallow properly. I found out that it's possibly the portal hypertension I have but was told that it is more than likely because I am old. At least, old for a Cfer.

I have never been able to envision myself being an old person. It is very strange to think that things are now happening to my body that for once, are NOT due to Cf, but due to getting old. Oddly, this makes me happy.

My heart is Tachycardic (beating too fast). This is because I don't get enough oxygen to my extremities or organs, so it's trying to compensate by pumping more blood. Thankfully, I have a really strong heart.

My fast heartbeat and the amount of energy I exert from coughing and just trying to breathe makes me very tired. I usually sleep 9-10 hours a night. Sometimes I even nap during the day.

75% of the time, I cannot breathe out of my nose. 25%, I can't breathe out of my mouth. It works out.

My sinuses are completely full of mucus and are putting pressure on my head.

The last time I had sinus surgery to help deal with the pressure was 1995 and I nearly died of Toxic Shock Syndrome due to improper care, which has made me extremely leery of getting another surgery of the kind.

When I had Toxic Shock, I couldn't eat, everything tasted like metal. I spiked a fever that eventually topped out around 104.8 degrees. I lost 25 lbs in 5 days, I would randomly pass out VERY slowly, starting by losing my hearing and then my sight and then falling over. I could no longer walk on my own. I was in the ICU for 7 days and could only move my head. I lost all the skin on my hands and feet and I developed a cardiac arrhythmia that eventually went away. I had severe iron, potassium, calcium and protein deficiencies. Before TSS, I weighed 130 lbs. I haven't been able to climb above 115 lbs since.

Because of my nose being obstructed most of the time, my sense of smell comes and goes. Mostly goes.

When I cough, 90% of the time I pee myself a little. Sometimes a lot.

I constantly pull muscles. Mostly abdominal, but sometimes intercostals, and the occasional glute (yes, sometimes I pull my ass).

A Charley horse in the ass is really painful.

I have coughing fits that bring me to the point of almost passing out.

I am always one coughing fit away from a migraine-level headache.

I have proven, on more than one occasion, that it IS possible to cough, sneeze, cry, snot, drool, burp, vomit, piss, AND fart at the same time, while driving a car down the freeway. I have friends who can attest to this, as they have witnessed it.

I wear oxygen 24/7 at such a high rate that the hissing noise in my nostrils sometimes keeps me from falling asleep.

I have some of the biggest boogers I have ever seen come out of a human.

I have to clean the boogers out of my nose 2-4 times a day. The irritation causes a lot of bleeding and I often have to wedge tissue up my nostril. I then wedge my nose hose in there too for good measure.

Sometimes it's so hard for me to breathe that I have to sleep elevated because laying flat causes a coughing fit.

My breathing is such a task that I am gasping for air any time I eat or drink, which then causes me to burp a lot because I swallowed all that air.

Every time I eat a normal sized meal, the food pushes up on my diaphragm, making it extremely hard for me to breathe (this is why when I am sick, I have to chose breathing over eating and therefor I lose weight).

9 times out of 10, my cough will trigger my gag reflex.

If I have a bad coughing fit after eating food (which happens 50% of the time), I will vomit in my mouth, and because I can't afford to lose any of those valuable calories, I have to swallow it back down.

I set my alarm for four hours after I go to bed so that I can wake up, swallow some enzymes, slam an Ensure Plus or two, and go back to sleep. I do this every night in order to try to gain weight.

People with Cf usually burn twice as many calories as our healthy counterparts. To counteract this, we have to have a really high daily calorie intake. Usually between 3K and 4K.

I am proof that highly processed foods make you gain weight.

Due to Kypho-Scoliosis, my spine, neck and shoulders are completely fucked up. I would be like a jigsaw puzzle in a Chiropractor's nightmare.

Because the bone structure of a person with Cf is mutated (I blame alien genetics), my head does not sit like a normal person's does. Instead of being like an i, where the spine goes up and a head sits on top, my spine is more like a c, where the head sits forward on the spine, giving us the beautiful physique of Quasimodo.

Also because of the Kypho-Scoliosis and the placement of my head, my Trapezius muscles are constantly tensed due to attempting to hold my head in place. It is a constant battle with gravity.

I am in some sort of pain everyday. Usually, it's a culmination of lung, chest cavity (usually the pleura), muscular, arthritis and digestive tract pain. Or any one or combination thereof. I can usually handle it during the day, but after about 10-12 hours, I can't take it anymore and need to take a pain pill.

Pain pills can and will make you constipated.

I have such loud Tinnitis that sometimes it literally blocks out all other sounds for a few seconds. Sometimes it keeps me from sleeping as well. I also think that I hear phones ringing when they aren't, and hear other "bell" like sounds. I've also lost 2 pitches of sound.

I cough up something red every other day. Most of the time, my mucous has a red tinge to it.

Coughing up a mucous plug is really painful for me. The biggest one I've ever coughed up was just a couple weeks ago and it was an inch long. It opened up a lower part of my right lung. I could actually feel the difference.

I have small bouts of hemoptysis, usually as I am laying down to sleep. I am thankful that they are small because they didn't used to be.

Because of numerous severe hemoptysis episodes, I had to have both lungs embolized. This is where they go in and basically "glue" the rupturing blood vessels (and associated bronchi) closed. I lost over 10% lung function because of this.

When I was embolized, they "glued" too close to a major nerve bed and I now have permanent nerve damage on the entire left side of my body. It feels like pins and needles, especially when touched.

I shoot two different types of insulin every day. One basal (long acting), one analogue (immediate). Sometimes I start crashing and the only thing my stupid brain can think to say is "UH OH!" repeatedly. Diabeetus blows.

Mark now knows what to do when he hears me say "UH OH!" repeatedly.

Everything I have wrong with me is due to having Cf. I have Cf related Diabetes, Cf related arthritis, Cf related liver disease, and Cf related sinusitis. If I didn't have Cf, I'd probably just have Asthma and Hay fever like my dad did.

I have to save up energy to do simple things, like shower or load the dishwasher.

When I was recently in the hospital, I nearly passed out in the shower twice due to blood sugar crashes. This has given me an irrational fear of showering, not all the time, but most of the time. I'll go days without bathing, it's not pretty.

I have a small panic attack inside when I see a staircase or even a slight incline.

On top of taking care of myself, I have to take care of my dog Luna. She's pretty awesome, but she has needs too, and I am usually the only one around during the day to fulfill them. I'm extremely happy that I got a small dog. She is a wonderful companion and has greatly improved my quality of life. Plus, little dog = little poops. Not much mess to clean up.

Everything I put in my mouth has to have calories in it. (Insert dirty jokes here)

Going outside is considered an Extreme Sport for me.

I can no longer patronize grocery stores. I have found them to be huge germ havens and usually become very ill after being in one. Mark is gracious enough to fill our grocery list every week. I am also lucky that our main grocery store offers home delivery, should Mark not be around to go.

If I didn't have to go to doctor appointments, I would only leave my house twice a month. Maybe.

One of my big O2 tanks lasts me about 3.5 hours. One of the small ones lasts 26 minutes.

I live on the second floor of our building. This doesn't help get me out of the house more. Oxygen tanks are heavy. I am weak.

I order everything online. Literally EVERYTHING, from dog shampoo to pie filling. Amazon Prime is awesome.

Hugs to you all. :)

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