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It happened so quickly and I will never forget the moment. I'd been in Ireland for a couple of weeks, driving for hours at a time, gawking at and soaking in the astounding beauty and connecting with the homeland of my Irish ancestors. I'd made my way to Kilkenny and was at the end of a long day of sight-seeing, oh-so-tired but delighted to be in such an amazing place, and got checked in to my hotel. Seeing as there's really no such thing as a bad pub in Ireland, I randomly ended up in the one pictured in search of food and drink. I was sitting at the bar on the end stool, enjoying a half-pint of Stonewell Cider (my favorite, hands down), chatting with the bartender and waiting on dinner, and suddenly felt a weird twist in my chest. It was startling, painfully sharp but quickly gone... and I felt like I couldn't breathe... and some sort of second nature must've unconsciously kicked in because I gave myself a hard open-handed slap in the center of my chest without even thinking about it. I then took in a very shallow breath and give a small cough. My skin was instantly clammy, my heart began to race, and I leaned into the bar so I wouldn't fall off the stool as I struggled to breathe. You'd think my 20+ years of ICU nursing would've clued me in that something was very very wrong, but nope! I was in Ireland, dammit, having the time of my life and so I sat there, trying not to pass out, taking shallow breaths and forcing out little baby coughs, firmly telling myself I'd had a sudden onset of some type of respiratory virus and it, coupled with anemia that had been diagnosed just prior to my departure from home, was surely the cause of me feeling like I was perched on a barstool next to Death Himself. The bartender gave me some serious side-eye and asked if I was okay. I told him I wasn't feeling well, asked for my dinner to go, and he kindly helped me across the street to the door of my small boutique hotel. I staggered and gasped up the stairs, lay down in the bed, called my husband and told I'd come down with a nasty virus and was feeling horrid. I joked that I felt so bad I might die, he told me he'd check the life insurance. (Yes, we're morbidly humorous like that.) We hung up because I felt too short of breath to talk, I promptly took one of my "airplane Xanax" and tried to rest.
In Denial
The next three days were hellacious. My ribs hurt so badly from the constant coughing. I do carry a small first aid kit with me when I travel but I was out of ibuprofen and so instead I maxed out the suggested aspirin dosage daily to help with the discomfort. I took more of my small supply of Xanax to help me rest and to quell the overwhelming anxiety I was feeling from the shortness of breath. I didn't shower, didn't brush my teeth, I hobbled to the bathroom as needed. The hotel staff knew I was feeling poorly and brought bottled water and broth. On the third day after I "got sick" in the pub it was time to check out, so I slowly and haphazardly stuffed my suitcase and dragged it and myself to my car. I drove from Kilkenny to Wexford, gassed up then dropped the car at Hertz, caught a taxi and spent the night near Rosslare Harbour so I could catch the ferry back over to England the next morning. How I managed it all I still don't know but it's likely because people in Ireland are generally very friendly, I was using a cane and trying to manage luggage, and I got a lot of assistance. I constantly felt like I was going to collapse.
Did I consider medical care? Nope. Like an idiot, I kept telling myself I had a respiratory virus that just needed some time to run its course. I was totally in denial. I slept a lot, kept taking aspirin and Xanax, and just hoped and prayed it would end soon. Around day five or six I felt slightly better, but the rest of my trip was ruined. I could barely walk, much less sight-see, and about ten days after my time in Kilkenny I gladly creeped onto my ship to cross back over the Atlantic. I spent the entire crossing sleeping, coughing, and ordering room service. Seven days later I arrived in New York and boarded an airplane for New Orleans. I think that flight may have been the longest three hours of my life; I was miserable and so very short of breath.
Diagnosis Revealed
As soon as I got home, my husband pointed out I couldn't hold a conversation without becoming so short of breath that I'd nearly black out. My heart raced when I did something as simple as stand up from a sitting position, walk around my house, or roll over in the bed. I then noticed a cramp-like feeling in my right calf that didn't go away with rest and suddenly, finally, everything clicked. BLOOD CLOTS. I could check off SO many risk factor boxes for developing blood clots: eight weeks of long-distance travel during which I'd sat for hours at a time while driving, I was newly on estrogen-based birth control pills to control the perimenopausal bleeding that had caused my severe anemia, I was overweight. I also had impaired mobility from a previous hip injury and surgery. I immediately went to my primary care doctor and she sent me directly to the Emergency Room at my local hospital.
Once there, the ER physician ordered doppler ultrasound testing on my legs and a specialized CT scan of my lungs and, no surprise, I was loaded with blood clots in both. Also, my heart was failing, my septum (the dividing wall in the middle of the heart) was pushed over to the side because of pressure from the clots, and my oxygen level was abnormally low. I was admitted to ICU, put on a heparin (blood thinner) IV drip and oxygen, and listened in disbelief and horror as a rotation of physicians came into my room and told me I should've died in the pub, and I definitely should've died on the airplane. My cardiologist told me, "I looked at your CT scan and you are a very lucky woman. You obviously have more to do here." He then left me to consider exactly what that might be. I left the hospital on a blood thinner pill and with instructions to see a hematologist for genetic testing and medication management. I felt like Alice in Wonderland, like I'd gone down some crazy medical rabbit hole... and I still felt so very ill.
The theory of my doctors was that I am a person who cannot take oral estrogen because of the way it affects my clotting due to what's called a "first pass effect" in the liver's metabolism of the medication. When you take medication orally, it goes to the liver first. Because my clotting factors were affected by the way the estrogen was metabolized in the liver, I became very prone to blood clots. While I was driving all around Ireland, I developed a large blood clot in one or both of my legs. I don't recall feeling any of the usual signs or symptoms of a blood clot in the leg, or, if I did have them I ignored them.
When a clot breaks loose from its leg vein, it goes up the inferior vena cava (see the diagram), through the right side of the heart, and into the pulmonary artery. Mine lodged right at or near the split where the right and left pulmonary arteries carry off blood into each lung so it can be oxygenated. A clot at this split is called a "saddle embolism" and it's the most immediately fatal of all the types of clots. This process can happen rapidly, or over a period of time. For me, the clot did its final bit of travel to its stop in the Kilkenny pub.
Over the following days, possibly because of my aspirin use and definitely due to the body's natural process of fibrinolysing clots, it slowly began to dissolve. When I was diagnosed, one big piece was still in my right pulmonary artery. Other pieces had further broken and worked their way down through my lungs and blocked off vessels in the lower lung bases so that I eventually had multiple clots in both lungs. Because I did not seek treatment until I returned home, my body compensated the best way it could, which included heart failure and infarcted lung bases.
The Long Road of Recovery
After I was discharged home, I saw all kinds of doctors: hematology, pulmonology, cardiology, gastroenterology, gynecology, vascular surgery. I was sent for various testing to make sure I didn't have cancer, as blood clots can indicate its presence. I had iron infusions for the anemia and my hair began to fall out from the blood thinner medicine. Due to the damage in my leg veins from the blood clots, I developed post-thrombotic syndrome which caused my legs to burn, itch and ache almost constantly. If I wasn't laying down, my ankles and calves swelled up like balloons. Anxiety soon manifested and then increased daily with a vengeance. I couldn't leave my house by myself because I was afraid I would die. I began to have multiple panic attacks daily and they even woke me out of a sound sleep several times a night. I would then wake up my husband because I was terrified I was dying. After three months of us working together to help me get through the near-constant onslaught of fear, panic and sheer terror, he was exhausted and I was suicidal. My oldest daughter showed up in my living room one afternoon and refused to leave until I'd arranged therapy, then she called to make sure I went to my first appointment. (Yes, I have amazing children.) I began to work weekly with a psychiatrist, an EMDR trauma therapist, a CBT therapist, and my healing journey began.
As I write this, my eyes are filled with tears thinking back to my feelings of terror that I would drop dead at any moment. Every ache and pain, every cough, everything, sent me into a severe fight or flight response. I spent many hours believing if I didn't die, I'd certainly never be able to live normally, much less travel again in any meaningful (to me) way but in August 2017, two years after my blood clot diagnosis, I was able to make a train trip by myself from New Orleans to Washington, D.C. for the long-overdue ceremonial inurnment of my father's ashes in Arlington National Cemetery. My daughter and sister were waiting at the other end of my train ride to provide support as I navigated the city. The trip was a sad one, but it was also a victory in terms of me beginning to return to some semblance of normality. I said goodbye to my father then allowed myself to enjoy exploring his hometown with my daughter and sister. In the summer of 2018 I rode the train again, this time to New York, to board the Queen Mary 2 for my 3rd transatlantic crossing. (I was still unable to fly, sadly.) A friend flew to New York to meet me and traveled with me on the ship and we met up with another friend once we arrived in England. The three of us drove (with lots of breaks!) around England and Scotland for a few weeks, did a ton of walking (slowly, with my cane, and I swear, every place in Edinburgh is uphill both ways!), had an amazing girls' trip, and I did a 4th crossing back over to NYC and trained it home again to NOLA.
Grateful, and Pinning the Travel Map Again
It's 2023 now, eight years post-diagnosis, and my travel calendar is brimming. COVID kept me at home all through 2020, but I've been travelling with my husband in our RV around the USA since March of 2021. It's been amazing. This past summer I traveled for three weeks to England and Scotland with friends and that was phenomenal too. I've got travel penciled in for 2024 and 2025 for more family vacation time, and to "tree travel" and visit other ancestral homelands in France, Italy, and Germany. I'm very excited and looking forward to wandering once again.
Looking back, I know I should've died in that Kilkenny pub and the miracle of my second chance at life has stayed with me. For whatever reason - good luck, the Goddess, that open-handed slap across my chest that allowed me to squeak out a cough - I did not die, and I now live my life to the fullest extent I am able in any given moment. I am fortunate in that my heart returned back to normal function and my anxiety is (mostly) managed with continued therapy and medication. However, I do still struggle, and sometimes recovery really is that old tired shtick of one step forward and two steps back, even ten. When I get frustrated with myself or my restrictions, I remind myself, "I am still here, still breathing and right now, I am okay!"
For those of you who love to travel, I encourage you to learn all you can about blood clots. They happen to people of all ages and levels of health, and they can be fatal. I survived but many do not. My next post will address the medical side of blood clots: prevention, signs and symptoms, risk factors, and resources. Please give it a read and educate yourself, and thank you for reading my story. May your travels be safe and clot-free!