Breathless: A Journey Through Respiratory Failure

Hi, welcome. I have many new followers. I appreciate you being here.

***If you are at all offended by the word FUCK, you might want to skip this post. No seriously, I give ALL the fucks on this one!***

First, thank you so much for the outpouring of love and messaging. It is so amazing to be reminded of how far I’ve come and the lives I’ve touched, no matter how big or small. You all are amazing.

I know many here are new and have stated the very obvious of “I never even knew you were sick”. Thank you so much, I tried very hard to not appear sick or unwell to those around me. I spent many years going from doctor to doctor trying to find answers. I got those answers, and decided it was time to live my life.

I went through several rounds of grief, being angry at the universe, denying anything was wrong with me, to being angry to accepting and adapting. Over time I learned it was easier to accept the things I couldn’t change, and I could control how I reacted to each bad thing or news that I got. I had to be conscious and aware of myself in every moment. I couldn’t change what was wrong with me, I couldn’t change the test results and what they found, I couldn’t change the overall outcome. I could change one thing….. how I lived, how I viewed the world around me. And I said Fuck It! So here we are 2025, still dying. But I fucking made it!! Never thought I would, but I did. Your mental strength goes such a long way! Stay positive, always!!

So, what the fuck happened? Want a recap? I’m going to give it to you anyway. Now that I became a badass EMT and started my medic. I’ve learned a lot, and I understand so much more as to what happened to me and the decline and what could have gone smoother, and I was never far off from what I knew with zero medical knowledge!

So, buckle the fuck up because this is a long ride, and I’m probably not going to stop! Looking back through my medical history and EKGs, my EKGs suggest I had pulmonary disease as far back as 2017. I had abnormalities dating back to 2017, on their own they look harmless but with the symptoms, and everything else that happened shortly after, my lungs were having issues long before 2020. I’m fucking stubborn, and that’s when I first decided to go and seek help for my shortness of breath.

2020 year of the lovely virus and fuckery, my lungs decided to take a deep dive and I started experiencing worsening symptoms of shortness of breath, dry cough, nausea. I saw my first pulmonologist. I thought he was a brilliant doctor. I would pick his brain, and ask him a million medical questions, it was great.

In 2018 I was diagnosed with Gastroparesis, paralysis of the stomach. My stomach doesn’t empty food as fast as it should or at all some days, which lead to nausea and vomiting. I had a surgical J-Tube till I pulled it out in 2024. Ok back to 2020.

My pulmonary function test in August 2020 showed my chest and diaphragm muscles were failing to get enough air in and push air out. Upon exhalation air was getting trapped, so I as unable to blow air out completely, on this test I still had 160% of air trapped in my lungs. That’s a lot of fucking air. My oxygen transfer was just starting to decline. My ABG that was done shortly after this. The tech thankfully missed the artery and got the vein so I do have a venous blood gas too, which is interesting to compare.

These were taken within a minute of each other. Don’t get me wrong if you’ve ever had an ABG done, the shit fucking sucks, do not recommend. I don’t recommend any of this, but yeah, it sucks! PCo2 is your carbon dioxide, to compensate my brain was telling my lungs to breathe faster and harder to lower my Co2 levels in the blood. Essentially hyperventilating, which uses a lot of energy, causing Co2 to rise in the blood.

Venous 02 will always be lower than in Arterial, I’m not a doctor I don’t need to know why, I don’t know the specifics on that. But as far as explaining why on the venous blood gas, because I was breathing too fast, and with rapid shallow breathing, you’re not fully ventilating the lower parts of your lungs. For medical peeps who maybe learning more about this, this causes a ventilation-perfusion mismatch, meaning blood is flowing past the alveoli and aren’t participating in gas exchange. That causes a drop in 02. Non-medical peeps- There’s not enough oxygen in my blood, because my lungs are working too hard.

If you know anything about obstructive airway disease like your COPD patients, well those are probably going to be your most thought of patients. But then you can think of me your weird, little medical unicorn. HIIII!!!! Where do we usually stat at? Your typical COPD not everyone so please don’t go thinking your patient at 90% is fine, but they are usually baseline low. Please ALWAYS ask what their baseline is!! Don’t read this and think low is fine, fuck no!! My Sp02 is normal 96-99 on a good day, its normal, but blood will tell another story. There is where I get into the use of oxygen.

We are still in 2020, I know FUCK, get to the good shit. Really all this gets me to where I am today. Trust me. I just talk/write too much, and my ADHD goes on side quests so bare with me go stop reading. Yay you didn’t leave! Ok ok!

I was ordered Oxygen 2 LPM nasal cannula based off my VBG result. My Sp02 was normal. I was hypoxic on a tissue and cellular level. My body was used to a low oxygen level, and statting where it was. Putting someone like me on oxygen could have worsened my respiratory drive leading me to needing the BiPAP and then being trached sooner. Every time my lungs decreased in function, I knew. It happened rather rapidly between August 2020 and January 2021, and I’m going to run through every theory and possibility I can think of. Would it have stopped my lungs from failing, no. But would I have had more time, maybe, who knows. Again processing every possibility.

I remember When I knew my heart was going way too fast for way too long. It wasn’t just POTs. I knew something was wrong. Your heart and your lungs are connected so it only made sense that my heart would be working harder to compensate, right? I went and saw a cardiologist. Spent 3 hours at my first appointment. They listened, but I was also dismissed, because I was on Adderall, so obviously my high heart rate was from my medication. Fucking bullshit, before my lungs went to shit, my heart rate was low 60’s resting, 50’s even (I was weight training and active, that was my norm at the time). The perfect resting heart rate, even on Adderall, so I knew something was wrong!

This dude didn’t want to hear about my lungs, despite me being on 02, and in a wheelchair. 15-day monitor showed several things, came back told me I needed to eat a balanced diet and exercise. Never saw another cardiologist again! Never cared to even give a fuck to see another one, ever. That was it for me.

If you missed it, while all this loveliness was going on, I was also fighting my Gastroenterologist to give me a G-Tube. G-Tubes are great for venting air out of your stomach, any residual food that might be left after hours of eating for those with gastroparesis (GP). I was denied every time I asked, no real reason as to why. I wanted it because it would have given me a better quality of life. I was NPO (nothing by mouth), for those two years, because I was vomiting and extremely nauseous. I now after 4 years know why…….. YAY EMT. When you push air into the stomach what happens to our patients? CPR 101, you don’t even have to be an EMT, it’s fine. For me because I couldn’t breathe, I would result to mouth breathing a lot. This would cause or worsen the nausea, and of course, air in the abdomen leads to vomiting over long periods. For TWO YEARS I WAS FIGHTING FOR A G-TUBE TO VENT AIR!

I had chronically low potassium or hypokalemia, due to the repeated daily vomiting. Two years. I could have died, but I didn’t die, because I felt like that would have defeated the whole purpose of fighting like hell. I also like to prove points. By the way, I had no control over whether or not that happened.

There wasn’t another GI doctor who wouldn’t have done surgery fast enough, I would have needed to go through all the same tests again. I didn’t have time, trust me I thought about it many times.

I got trached in Jan 2021. It was hell. It was the worst experience of my life. I think if I had gone through something super traumatic and woke up with one, ok. But to wake up and not be able to breathe, and then not be able to talk, regulate your body temp, eat, live normally without being on a vent. I was miserable as fuck. I wish I had taken photos that reflected that, but I really tried to remain positive during that entire time. I knew pretty quick I didn’t want it. I knew my doctor wasn’t just going to pull it out either. I had to come up with a plan right. The trach bought me time so genetics could figure out if anything genetically was causing my respiratory failure and if so was it something that’s treatable. The trach helped offset any metabolic acidosis that was occurring. It helped to reset some things and buy me time. It wasn’t all bad.

My GI doctor finally after nearly dying, decided it was time to do the G-tube. I decided to try to get my potassium up as high as I could and try to get off the vent, and say I was fine, I didn’t need the trach. Fuck that trach.

May 2021, I got the trach out. My potassium was just above normal, and it stayed there. You know why, because the issue wasn’t actually my potassium causing my respiratory failure. My pulmonologist dismissed it being anything but that. I helped plant that seed there. So when my breathing changed, and I wanted to do a PFT, I was denied saying I just needed to give my body time and for my lungs to get stronger.

Genetics came back, I had 4 mutations to my mitochondrial genes, none of which have been researched yet because not enough people share the same gene mutation for it to be researched. Every few years my exome sequencing gets cycled through to find matches in hopes of finding more people with the same mutations as me. It takes time. My lungs are failing not because of my potassium though.

I went about my life, I opened my business. Life went on, but I still couldn’t breathe. Simple things like cleaning the kids room would leave me short of breath. Trying to get orders done, was taxing. It was hard, but I learned to manage. I knew something was wrong and I needed to find a new pulmonologist. Someone who was going to listen to me, and order another PFT. My primary recommended someone and I was able to do a one time switch and changed providers.

2023 I met with a new pulmonologist. They were amazing, and willing to listen to my concerns. They also agreed that my respiratory weakness wasn’t due to hypokalemia and weren’t just going to get stronger with time. The plan was to do a PFT, and repeat it every 3-6 months as necessary. That seemed pretty fair. So in August 2023 I had my very first PFT with muscle function test post trach. The results showed, exactly what I thought and felt over the course of several months. In 2020 my strength to inhale was at 40% of normal it was 19%, the strength to exhale went from 12% of normal to just 5%! So, my diaphragm and chest muscles were struggling far more then prior. My expiratory muscles were getting weaker, and the PFT showed this decline happening. I was trapping 208% of air, so after I exhaled, I was still holding 208% of air in my lungs. That’s 103% more then 2020! You guessed it I was not exchanging oxygen well.

It was confirmed my respiratory function was still failing. We tried different inhalers, and nebulizer treatments. Nothing really seemed to make or help make breathing easier. I was running out of options, and to be fair there really aren’t too much.

2024 rolls around and in March I have another PFT. This was the absolute worst test I’ve ever had. I know I’m young and I look like I’m not as sick as I am. People really do treat you like shit and don’t listen to anything you say. The test really isn’t hard for your average air loving person. For me, having to repeat everything 5-8x is tiring. First part of the test I had to do several times, because apparently I can’t do it the same more then once. I gave that shit my all the first go. I nicely explained to this tech that my respiratory muscles are going to get tired the longer she has me try to repeat this one part. So we move on, second part, same thing…. Third, same fucking thing. I was too tired by the end of it all that we didn’t even get to test my muscles. I was done. It wasn’t until the end that she looked at my previous tests and apologized. Fuck she’s actually sick! Looks say nothing about how sick a person is!!

I nearly lost my shit during that test and had a full-blown meltdown. That may have been the worst day of her career. But I didn’t. instead, word got out, and I had to explain what happened to her boss, and someone else I forget. It probably still ended up being a not so great day of her career and a lesson I hope she carries on through it. It was literally torture for me. I remember sleeping for the rest of the day.

My total lung capacity dropped a lot from 5.4 liters in 2023 to 4.27 in 2024. This shows progressive restriction, which means my lungs and muscles weren’t expanding as well. More than half of the air in my lungs couldn’t be exhaled and was being trapped.  I was too fatigued to even get to the muscle function portion of the test. So, really I was in advanced respiratory muscle failure. I had my appointment immediately after this PFT.

My doctor came in a bit shocked I had declined as fast as I did. I came in with an agenda because I wasn’t going to prolong this out further then needed. My concern was what were the next steps going forward. We can’t keep doing PFT after PFT and watch the decline. I wasn’t interested in that. I wanted to know their plan. We went around in circles a bit, and I firmly stated my breathing isn’t going to get better, I can hardly do simple tasks now, so I need to know what the plan is. The plan was to get an ABG, sleep study which can help determine or for insurance purposes move along the process for oxygen, and if necessary re-trached. I immediately stated, “we’re not doing that, and I will die on that hill”.

Days following, we got the run around on getting the ABG scheduled. I took it as a sign. I said fuck it. Why go through any of that, if I don’t want any of it and so I didn’t. It made no sense and no one was forcing me. I never went back. I was so burnt out from my business that I closed it in the summer of 2024. It wasn’t enjoyable any more. It’s not what I wanted it’s what I thought others wanted.

My lungs were going to fail, and I was prepared to make the best out of the rest of my life. I started looking up ways to naturally heal my lungs, ways I could naturally heal myself in general. Foods, herbs, really anything and everything. I became a reiki master, and learned all about that, but somehow that just didn’t feel right. I was on this path of finding my purpose. I honestly can’t remember how I ended up on Virginia Medical Training’s page, but registered for their EMT class. Summer of 2024 we took a family trip to NY.

For the first time in years I was listening to my body, I was eating better, working out here and there. I wasn’t going to countless doctors appointments. I was living life how I wanted to live life. August 2024 I started a 3 week intense EMT program. I swear everything happens in August! By the end of August I was a Nationally Registered and state licensed EMT-B. Passed on the first try, but I was confident in myself and what I knew. I never doubted I could do it.

With everything I had been through, with all I knew medically. I wanted to be there for others. I wanted to help others. I thought I had so much more time. After getting my basic I knew immediately I wanted my medic. Even if I never got to practice it was the knowledge I wanted. I wanted to learn, I wanted to learn more past the basic level.

We won’t even get into my first job. I won’t speak bad about it, but just fuck NO! We’ll consider LifeStar who’s located in Emporia, VA as my first job. Considering I was there for 6 months, I really enjoyed it. I learned a lot from the paramedics I worked under. I admit I avoided most people, I wanted zero to do with the drama, and many rumors flooded the place about me. I’m ok with it. For a small company shit happens.

The owner of the company, who also happens to be a medic, thank you! Thank you for taking a chance on me and giving me an opportunity in your company. I enjoyed running calls with you and our long talks after, and caring if I had eaten real food. Thank you for always listening.

I love that all the medics have their own different ways of doing things. It’s nice to be able to pick up and learn different techniques so you can find what works best for you. The other EMTs were all pretty cool. As I said I avoided most people and stayed to myself. I really didn’t try to be friends with anyone or get tied up with the rumors and drama. That was because one I’m awkward as fuck, thanks AuDHD, but also I didn’t want to get close to people. I did get close to a few. I wish I had known sooner I was as sick as I was. I really thought I was ok.

I never allowed anyone to see me in a bad mood. I always made jokes, and wanted people around me to enjoy their day. If we had to be at work, we were going to make the best of it. I’m the most laid back, zero fucks person. The universe always has a way of reminding me of reality. I ended up getting a lot of respiratory calls. Lots of vent calls, solo respiratory distress or shortness of breath calls.

At the end of December 2024, I noticed a change in my breathing again. I never slept at work, laying flat never worked for me. It felt like I was drowning, and I’d get up and felt worse than before. People didn’t need to know that though. I would just never sleep, I was used to that, and I have a long history with insomnia. By Jan 10, 2025 something felt off and I checked my BP which was 152/100. I knew immediately what was happening. I felt fine. Other than the shortness of breath here and there, and the BP I felt fine.

I started a Paramedic course on January 13, 2025. I was so ready to jump all in, I was excited to start this new chapter and learn everything I could. The first month went by so fast and I was loving it. Our instructor was absolutely amazing. It’s made a world of a difference when your instructor is enthusiastic, and upbeat and has a positive attitude, because it really motivates and sets the tone.

February the BP is still high but here comes my good friend tachycardia. Again, nothing felt abnormal, I felt like my usual self. I was walking around with a BP of 155/100 - 160/110, and my heart rate was in the 120-130 range at times. I did hold calls if I did feel it was necessary to do so. For the most part I was ok. I was more aware thanks to my medic course. I was just living life.

March was really no different until the end of the month. The tachycardia started getting worse, more persistent (not going away). I started noticing I was waking up to my heart beating 120 BPM. Yeah, what the fuck is right! I felt generally ok, I think that’s what kept me going. Early April I started getting hints, something wasn’t right, something was off. I just felt different. I would stand there, and for a second and it’s like this wave hits, and I could feel everything shift. No I’m not fucking altered currently writing this. That was my experience. Well first one.

Second time happened on March 9, 2025. I actually fell asleep at the office. I called out the night before, and confirmed I was calling out. I almost didn’t, I hesitated for a moment. I stood up and its like that wave hit, except this time stronger. I was so nauseous this time, I grabbed a Zofran from my bag and packed my car. It’s like your whole sense of self completely shifts for a moment. It’s the best way I can explain it, it’s like you know something bad is going to happen. I called Richard (my husband) on my way home, because suddenly I got really tired, this was really unusual for me. He talked to me, kept me awake until I got home. It’s not like I had done anything differently. I slept, and I rested the next two days.

Saturday April 12 2025, I worked, and it seemed like a normal work day. There was a third person with me, which honestly probably helped a lot for what was about to happen. I spent the morning helping clean and scrub the office, which wore me out a bit. I was fine. The whole shift went alright. Besides my episodes of tachycardia, I was alright. I did feel a bit more tired than normal and I didn’t feel as hungry as usual, but nothing felt hugely off.

Sunday April 13, 2025, I got to work and it seemed like any other day. I came in, I settled in, I laid on the couch because I was there a bit early. I just relaxed for a bit. Here comes that funny feeling like something was just off. I had my calls held. My chest was hurting, I was having tachycardia, nausea, headache, and shortness of breath. I was really curious what my capnography would show. It’s a device that can look like a nasal cannula, that measures the amount of CO2 in an exhaled breath. I left work and I drove across town where a friend was working who had one. I was on the low end of normal standing still, laying down it dropped. Its kinda what I assumed would happen.

Here we go, are you ready for the punch to the fucking face. The moment we all get the rude awakening. April 14, 2025, I went to the ER in the afternoon. Look ok, I didn’t want to go first thing in the morning, but why do I always go when the place is fucking packed. Like everyone knew I’d be there so everyone with a cough showed up. EKG is the first thing done, tech was amazing and gave me a copy so I could show my paramedic friends in class. I was not prepared for what it said. Sinus Tachycardia, right atrial enlargement, rightward axis, pulmonary disease pattern, RPS or QR pattern in V1 suggests right ventricular conduction delay, abnormal EKG. So pretty much my heart is compensating and working hard to make up for what my lungs aren’t doing. Mainly the right side of the heart which is stretching the right atrium, and the conduction delay possibly a right bundle branch block, these are seen with pulmonary diseases or cor pulmonale.

My heart is working harder and faster to compensate for the poor oxygen exchange and systemic stress. The right side is under strain from trying to pump against high pressure in my lungs. The delay in the right ventricle is further supporting chronic strain.

Chronic Hypoxia or low oxygen in the body signals the body to constrict blood vessels to try to redirect blood to better-ventilated areas. This increases pulmonary vascular resistance which spills over into systemic blood pressure, with the right sided heart strain, my heart is working harder to push blood through stiff, poorly oxygenated lungs. This creates increased pressure in the right heart and pulmonary arteries, that pressure backs up leading to systemic BP rises to help keep perfusion going. This is cause for the ongoing high blood pressure. My body is doing what is needs to compensate for my lungs failing.

While in the ER they did get a venous blood gas, which was abnormal. All other labs were normal. YES INCLUDING POTASSIUM!! I’m not hypokalemic! So lets break this down. pH is normal but right in the middle. My carbon dioxide or co2 is really low, I am burning off too much by hyperventilating and trying to keep up with my oxygen demand with weakened respiratory muscles, 02 is low so I am hypoxic on a tissue and cellular level, HC03 is bicarbonate which the kidneys are responsible for.

Bicarb is really hard to explain without really getting into it and diving deep. Your kidneys help to excrete several things like Hydrogen ions which helps to regulate pH, your kidneys also reabsorb Bicarbonate (HCO3). Your bicarb is your body’s main buffer against acid. It helps keep your blood pH in a very narrow, healthy range. When your bicarbonate is low, your blood becomes too acidic – this is called metabolic acidosis. This is where I am due to the low HCO3.

So when you are active your muscles use glucose and oxygen to produce energy (ATP). If you push hard enough this can produce C02 as a byproduct leading to lactic acid too. Both CO2 and lactic acid increase acidity in your blood. C02 gets blown off by the lungs, but the acid, is neutralized by bicarbonate (HCO3). My body is already very low, there’s not enough buffer to neutralize the acid. The metabolic acidosis will worsen and my lungs and kidneys won’t be able to keep up. For me right now, even light activity has the risk of pushing me over the edge.

So what does this all mean. My respiratory failure is pretty severe. It is right now targeting and destroying 2 other of my major organs as they work harder to compensate. If you are asking how it feels… well, it feels, fucking amazing! Seriously, I’ll save that for another blog post. Before I start pain meds, I want the world to know what it feels like to have your organs fail. Being hyper aware of things is quite interesting and I can probably give pretty graphic details on what it feels like and what I’m experiencing. For all those medical people who are curious of course.

April 16, 2025 I requested to be pulled from work. There was no way I was going to be able to return. I had a great run. I did what I set out to do. I became a badass EMT, I started Medic school. I want my kids to remember me for who I am now and not for who I was while I was sick for all those years. I want the good memories to be what stick. I know they’ll be angry at me for a while, and I’m ok with that. I just want them to look back and be proud and know how much I loved and cared about them.

April 23, 2025 I am officially enrolled in hospice. 37 and dying. There have been some changes already to my breathing, pain, etc. Over the next couple weeks I have no doubt my body will show more signs of decompensating. Luckily I know what signs and symptoms to watch for. All I can say is I don't have much time left. It is definitely a crazy feeling to know one day soon I won’t exist. If you believe, then know that I’ll be back to give signs I’m ok. Whether it be a raven or a crow, you’ll know it’s me.

The good we put into the world today, can be the change we see tomorrow. Always stay positive. Remember to make time to dance in the rain.