The pain of a pulmonary embolism (and the stuff that comes with it)
This is my second post in a string of posts about my recent pulmonary embolism (PE) and the resulting health issues I’ve encountered. If you’d like to read the first post, which is all about what sent me to the hospital, what needed to be done in the hospital, and what I needed to do to get out, you can click here.
This post is going to be an in-depth look at what exact health issues I had, how they made me feel, and why they made me feel that way. I always hear about people feeling a certain way and using webMD or some other internet source to sleuth out what they might be experiencing. This will be my attempt at explaining, from my own experience, what these medical issues feel like. It won’t be pretty.
DISCLAIMER: I’m not a medical professional and I have no doubt I’ve gotten some of my understandings a little wrong. Everything I’ve written here is based on my experience and what my doctors have told me. I’ve filled in some blanks with internet research.
To begin, your PE (blood clot in the lungs) comes from somewhere else. For most people a clot first forms in the legs. For some reason your body develops a clot in the legs, maybe it hangs out there for a while, and (possibly) eventually the clot starts riding the vein-train up your body. That clots needs to pass through the right side of your heart and then BAM! it is stuck in your lungs. I got
lucky unlucky and have an easy SIX BLOOD CLOTS PER LUNG. One clot in each lung is VERY sizable too. These are my pulmonologists words 🙂
The PEs themselves aren’t necessarily that painful because there aren’t that many nerve endings in your lungs. The nerves are all in the protective “lining” that surrounds the lungs. This sucker has a bajillion nerve endings.
In my case I started feeling pain because my PEs started killing spots of tissue in my lungs (ya know, due to lack of blood flow and all). This dead tissue is known as an infarction (or infarc). Once infarcs started to form that meant the lining of my lungs was beginning to swell and rub against that outer lining. The more swelling and the more rubbing the more my body started to produce fluid in between my lungs and that outer lining. This is called Pleural Effusion. Not only would that fluid start to press on my lungs but it would also start to contain some blood which ends up being almost a corrosive agent at this point in the game. Then as the fluid grew it started to collapse some of my lungs (for many reasons outlined below).
- Blood clots start somewhere and make it to the lungs becoming a PE
- Lung tissue dies around blood clots creating inflammation (infarc)
- Fluid starts to form around/due to inflammation (pleural effusion)
- Blood enters the fluid
- Lung tissue starts to collapse
So what does each step of the way feel like?
- Blood clots feel like my heart rate (HR) is 10-15 beats higher and that I might be getting sick, not a feeling that anything is particularly wrong. Thinking back on my last week of workouts before all my pain and hospitalization I had complained to Christa that my HR seemed higher for the effort I was putting out. I thought something might be a little off and assumed I was just tired or possibly getting sick because work had been stressful the past few weeks. At this point my issues were mostly my heart having to work harder to pass blood through.
- Infarcs start to feel like that rusty knife I’ve previously described. But not in a way that I (or I assume most people) feel warrants a doctor or ER visit. As I started to feel the infarcs I was absolutely in a lot of pain but it was very targeted. I could not recreate the pain by pressing anywhere on my body because when I felt the pain it was clear (to me at least) that it was under my skin and not based on muscle tissue.
- I specifically felt a ton of pain on the left side of my rib cage and in the center of my shoulder. This is why I originally thought I was out of alignment or pulled something like a rib. The placement of pain felt like it was coming from within me but the areas of pain seemed reasonable enough that I had done something to myself that put me “out of whack” some how.
- At this point in my pain management scheme I would best describe my pain as similar to having a terrible chest cold and when you cough it hurts really bad in one specific area. This pain did not include the general pain and discomfort you would feel being sick though, it was very specific.
- I also started to become short of breath during this portion of my health issues but (to me) it was nothing I thought was too concerning. It takes a lot of pain to concern me.
- Fluid starting to form around my lungs was (in hindsight) the moment I should have checked myself into the ER (this is my pleural effusion starting). I ended up waiting an extra day (which didn’t matter in the end because I was discharged and sent home from the ER anyway… at which time I got way worse). Fluid around the lungs (pleural effusion) is fucking awful. This is when I started my “spams” and “attacks”. My attacks could last 10 minutes or 60 minutes. I would have no idea once they started.
- Having these attacks, much like my 12-hour attacks of vertigo from Meneire’s disease was about living in the absolutely moment. I can not put into words the incredible pain I was experiencing, but I’m going to try! While I never felt like my life was flashing before my eyes I was never sure how painful my next breath was going to be (and I never thought past that next breath, I literally focused on breathing one breath at a time). No, that’s wrong, I knew exactly how painful the next breath was going to me. EVERY SINGLE BREATH I TOOK WAS THE MOST PAINFUL MOMENT OF MY LIFE. EVER. I’m not exaggerating. My only goal during those attacks was to make sure I kept breathing no matter how bad the pain was. The pain was like streaks of blinding lightening through my soul. Every breath. Each time. Until somehow things subsided.
- As Christa describes me during those attacks: “If people thought we had a child they would have called protective services immediately.” I was screaming out every swear word I could (mostly “fuck”) at the top of my lungs in absolute panic with every breath I took. And I took a lot of breaths. My breathing had become so shallow at this point I was easily into the 30s for breaths per minute (a typical adult is 12-25 and I’m a solid 10-12 in normal health).
- Think about staying under water for too long and coming up for air. Your lungs burn really badly and you’re gasping with very short breaths. This was what I felt with the addition of getting the wind knocked out of me before every breath and the feeling of lighting strikes and knifings and gun shots to my lungs on each breath. Then multiply that times 1000. And I still waited part of a day to go to the hospital because… I’m a fuckin idiot. I should also add that as I gasped through each breath my whole body would contort as I heaved and spasmed on the floor griping anything I could as hard as humanly possible.
- I’ve just described the pain of blood clots in the lungs coupled with infarcs and fluid.
Now let’s include the collapsing of both lungs because the fluid is growing and it’s been a few days since I’ve taken a deep breath so I probably haven’t filled my lungs more than 10-20% in days. My entire chest feels so tight and it’s like there is an elephant sitting on me. Everything is a blur. I literally sit or shuffle in pain and I can’t burp, sneeze, cough or swallow too hard without getting spams in my lungs. Eating and drinking are virtually impossible and incredibly laborious.
- I went to the ER with the above pain. They figured out I had some fluid surrounding my lungs and some blood clots in the lungs. They sent me home with blood thinner needles to stick in my belly and some Codeine and Tylenol. Clearly the Aleve I tried taking at home wasn’t touching my pain.
- Well the Codeine and Tylenol didn’t touch the pain either so the next day I was upgraded to Hydromorphone.
- So the doctors are trying to control my pain to no avail. All the while that fluid around my lungs is only growing and my discomfort is only getting worse. At this point I’ve only sat on a couch for 4 straight days (excluding being in the ER for a portion of a day) and I haven’t slept more than 30-45 minutes at a time. I sleep by mostly passing out sitting straight up and waking up because my neck and back are having trouble supporting me. My entire chest is under so much stress with every breath. I’m home because during my first ER visit and ensuing follow-up the next day with my general doc I was told all of this would pass. It was not passing.
- The next day I go to my first pulmonology specialist appointment. My pulmonologist spends less than 5 minutes talking to me and sends me to the ER. In the ER I proceed to have an “attack” in front of some nurses and the ER doc and everyone basically loses their shit to get me admitted. No one had or has had a clue on what to do with me other than try different pain killers.
- This is the point at which I’m given my first (of dozens) of morphine injections directly in my IV. I’m put on a morphine drip for my first few days and after that I’m given a morphine button to use when I have attacks or when I want to try to use my spirometer. So I’m being told I need to use morphine when I want to attempt to practice breathing normally. How is any of this adding up? At this point I’m also on a rotating regiment of hydrocodone (which starts giving me hallucinations!!). Finally I’m moved over to Percocet (Oxycotin) and Tylenol. All of this bullshit to attempt to control my pain.
I write all of this because I am now on my 5th day removed from the hospital and I’ve stopped taking my Percocet. Handling pain and discomfort is something I’m ok with as long as a problem is fixed or is getting fixed. I’ll go into more detail in my next post but all of this insane-painkiller-binge the hospital put me on could have been reduced to a few days if I had my pleural effusion drained sooner. While I was in a ton of discomfort having a chest tube hang out next to my lungs it was abundantly clear that the moment the 1.5 Liters of blood and fluid were drained from the space around my lungs I was feeing better.
Pain doesn’t exist in a vacuum. If you can treat what causes the pain you should really try to do so. I fully understand that a lot of people can’t do anything about the pain they feel, if you can, please make sure you do. Be your own advocate and make sure you’re as loud as you need to be in order to be heard. I was so doped up in the hospital that burden fell on Christa and I’m thankful she fought with my resident and attending doctor to change course and focus on fixing what was causing me pain.
While I’m pretty sore now the pain and discomfort is perfectly manageable. I just need to work to keep it that way over the coming weeks and months as the swelling goes down around my lungs and heart and I’m able to function more and more.
I’m in less pain today, today is a good day 🙂