So, I was talking to a good friend yesterday–hello Alvaro!–and he said to me that when looking at my recent Facebook posts it appeared that I had been “ticking along fine”; I gave no indication I had been sick.
In fact to most people, including many friends, I’m sure it has looked like I’ve been ticking along more than fine. But I haven’t been. Not really.
Sure, my heart was ticking, but it had been racing far too fast for over two months–at around 110-130 beats per minute. For a while it had even been irregular, struggling.
However, that is now a non-issue. My heart is still a little fast, but now within normal range. An echocardiogram taken of my heart recently shows I have sustained no damage; all my valves and muscles are in perfect working order. Medically, my heart is perfect, even if it felt broken for a while.
So, what caused so much upheaval in my body? For those who read my Facebook posts, you will know I rarely post about health. But sometimes, the quickest way to update many people when you are too acutely sick to message multiple people individually, is to make an online post to let loved ones know that you might not be online for a bit, but you are fine.
Even if I wasn’t.
That is what I did just before Thanksgiving last year. I had been in St. Louis with the boss, excited to be doing a new convention with him, until my arm started getting inexplicably painful. There seemed to be no cause–just pain. Lots of pain.
I was heading to Santa Fe, and friends, a few days later, to celebrate Thanksgiving, so the boss and I discussed ending my work trip earlier, so that if I needed medical treatment I wouldn’t be stuck in St. Louis, where no one I knew lived. We also weren’t sure if this was just a minor but freakishly painful strain/muscle tear injury to my arm, so why cancel my Thanksgiving plans before we know if it is anything serious? It was decided I should fly to Santa Fe earlier, so I could get the oh-my-god-why-does-this-hurt-so-much pain in my arm checked out where I knew I would have a support system if needed.
If you read a post I made on Facebook in the middle of November, you’ll know that it wasn’t a muscle tear, and it wasn’t minor, but it definitely was freakish. As soon as I arrived in Santa Fe I went straight to the hospital. It was discovered I had a major “flapping clot”–technically a DVT–in the superior vena cava (SVC), the superior of the two great venous trunks that return deoxygenated blood from the systemic circulation to the right atrium of the heart. Effectively the clot was limiting blood flow from the arm and my face (where, by that time, I was also feeling some sensitivity) to my heart, causing extra pressure and pain.
I knew it was serious when the ultrasound technician quite literally said “Oh shit” when he found the clot, and told me not to move my arm at all. I was transferred to a larger hospital, where it was debated whether they should blast the clot apart. If they did, that could mean they might not retrieve the bits fast enough before they hit the heart, which in turn could trigger another kind of blockage and a heart attack. I had already been told that day that if the clot had not been flapping (which also made it more precariously attached), it would have been a full blockage: they would have discovered it on the autopsy table because I would have gone into full arrest. My docs were not willing to play the odds with my heart, so I was told I had to dissolve this clot the long and tedious way: I was put on newer, better blood thinners and told not to use the arm, when possible, while the clot (eventually) dissolved.
To say I was in a state of shock is an understatement. I had been so close to dying.
Just eight years earlier I had also had a “near thing”. After the high of being a Campbell nominee at the Aussiecon Worldcon, and catching what I thought was severe con-crud followed by weeks of doctor hopping, I had been taken to hospital by ambulance and was eventually diagnosed with Factor V Leiden and Protein C Deficiency–both of which were conditions that thickened the blood. I had presented to the hospital with pneumonia, pleurisy, kidney distress, a urinary tract infection…and over a dozen lung clots! (I had so many clots that the hospital said I “lit up like a Christmas tree” when they did the CT scan with contrast, and they had never known of another case so severe, until my friend Amanda coincidentally ended up in the same hospital several years later with just as many clots and the same FVL diagnosis).
This time around it was just one clot, but it was in a more precarious position. I had already realized the value of life eight years ago as I had literally hacked up blood and spent a year just getting basic lung function back. The smallest things in life truly have so much more value when you realize you could have lost them–lost everything.
But my body would not let me forget how precious life is this time around. For nearly two months my heart and blood pressure were too high, my heartbeat irregular, and I felt constant pain down the arm. If I wasn’t sitting, I was shaking just to walk. I was constantly nauseous without any apparent reason, continuously faint, and I was weaker than a baby….
I was also hot, 24/7; I had constant temperatures. In fact, I was so hot that I had a heat rash most of the time, and when I was on a movie set a month later (Yes, really! A Lou Diamond Phillip’s movie! Squee!) I was watching a pivotal shooting scene being filmed outside wearing just a simple cardigan. It was December winter weather and I still felt SO BLOODY HOT!
Not only that, I had another medical cloud floating over my head. CT scans had discovered enlarged lymph nodes, which probably were contributing to how crummy I felt. There was mention of the terrible C word, and many follow up visits. My insurance denied an MRI, so I had to wait another month (during which I had yet another ambulance trip and hospital stay) before I could get an ultrasound and 3D mammogram on my breasts and underarms. They confirmed the multiple enlarged lymph nodes, but because my body has gone through so much, they assumed (hopefully truly) that the increased pressure in my body was due to the clot decreasing blood flow causing particulates of the blood to ooze out of the vein walls into surrounding tissues in amounts the lymphs had trouble filtering, thus causing them to swell.
Yet the scan results also showed one of those lymph nodes had “thickened walls” and was considered “changed”.
*gulp* To say this was a surreal and stressful time is an understatement. On one hand I was so grateful to be alive, and on the other hand it felt like that life was still not certain. If I had have had nothing else medically wrong with me they said they would have biopsied that lymph, because the way it appeared implied the start of that dreaded C word.
But I did (do?) have a lot of clot strain on my body, and a lot of secondary symptoms, and the lymphs were swollen on both sides of my body, which implies a systematic distress, but not the start of the big C. Cancer usually starts in one side of the lymphatic system, not both, simultaneously.
So my “changed” lymph node has been determined, in a official report, to be “probably benign”.
Yeah. Not really. But I can understand why they want to wait for three month follow up scans to conclusively prove it is not cancer, in lieu of a biopsy, before they officially label it as simply “benign”.
Which brings me to this post today–and a follow up. They deemed in January that I was too fragile to be taken off thinners to do a biopsy, when the change in the node(s) could have been caused by the clot itself. I have been advised that no surgery is recommended for as long as the lymph nodes are suspect, and probably not for the rest of the year unless for emergency reasons, so my troublesome nodes have more time to recover.
That means the lovely gofundme fundraiser so many of you lovingly backed, to halt my keratoconus via the amazing cross-linking procedure, is now on hold until the end of the year, when my body will be more equip to heal from a surgical invasion, even as small as the one to my eyes.
The thinners are what’s breaking up that deadly little time bomb in my body, so none of medical team were willing to rock the boat by taking me off them to biopsy a lymph. I am also all for improving my overall health before I put my eyes through a sensitive procedure, so I agree with their assessment. I have never felt so physically miserable as I did these past few months, even while I was so elated to be alive; I owe it to my body to be as careful and gentle with it as possible.
And I have recently had further reason to be more careful. (Yes, there is more–I don’t do things by halves!) At the start of the month (or was it the end of last month?) I collapsed. I had some warning of strangeness about to happen and then woke up on the floor. I called the boss officially to “call in sick”, and to make sure I was talking to someone while I was organizing aid to get to the hospital. He said that I was talking slower and I slurred my words a little. I didn’t know that, but I did have this strong impression that I just could not get the words out that I wanted to say.
I was taken to the local hospital, where I thought “Oh, I have just overworked myself. I am still so weak. They will check the clot hasn’t gone anywhere bad and I will go home to rest.”
No. The docs–the ones with the actual expertise–had not been in consensus with me. Words such as “arrhythmic event” “epileptic fit” and “stroke” were soon being added to medical jargon also uttered. My slurring and slowed speech, as minimal as it was, was a red flag to them. I was transferred (my third ambulance trip in as many months!) to Riverside, in Columbus Ohio, where I spent the next four nights in the Neuro Unit/Ward/Hospital wing being–quite literally–tested hourly for signs of neurological trauma.
As you can image, getting my eyes done was as far from my mind as possible by this stage, although my eye condition hilariously (and inconveniently) meant that it was impossible for the nurses and doctors to do eye coordination tests on me to discover indicators for neurological damage. I literally see doubles, having Keratoconus, and so I will never be able to touch your finger if you hold it in front of me. (As a friend recently said to me when I recently fell down a set of stairs, “You walked down the wrong set of stairs”, because I mistook one of the doubles for the real thing and literally misstepped.)
So what was the verdict? Not seizures. Also, I was told the event was probably (there is that word again!) not triggered by an arrhythmic attack either, although I am to wear a monitor for a month to study the rhythms of my heart, since it has been under strain since November. No, the verdict appears to be a stroke. Not from a hemorrhage in the brain, but either that pesky SVC clot had broken off, to block a pathway to my brain (TIA), preventing oxygen flow to my blood/nerves/tissues for a select amount of time, or there had been another ticking time bomb (clot) floating around my body before the new blood thinners had taken effect.
Either way, my inner monologue was something like “Oh-my-god-I-had-a-stroke-I-am-too-young!”, in a somewhat panicked realization. It felt so surreal to be in this position where the breaking up of a clot (or two) meant that I had a second near death experience within months. But physical exercises confirm that I have left side weakness (some nerve damage?) and decreased sensitivity. Although it is minor–I am such a lucky girl, for being so incredibly unlucky–the strain on my body has been hard to keep up with.
I sleep continuously, when not working. And I feel like I’m working continuously. to catch up.
I have yet to have my follow up with my neurologist, and I am looking forward to clarifying exactly what happened now that I’m a lot more conscious. Hourly wakings at the hospital for nearly five days straight took a toll on my ability to stay alert and cognizant of the finer details.
But I am alive, and that is what is most important.
I have also been assured that on my new thinners I should not get any more clots, which helps me avoid the whole “near death” experience yet another time. I still have to get the follow up results of the lymph scans, but it is nice to know I won’t have little ticking time bombs within me causing more dangerous blockages. I can, and will, get so healthy it will make you sick. *grins*
I have already made such great progress on my path to a healed body over the last few months, losing a lot of weight to get fitter (now you know why my FB post about being able to exercise was such an important milestone for me), but I’m still experiencing the symptoms of how close I was to losing it all. So if I hug you a little too hard, or am too vocal in my feelings, it is because I know how important it is to let my loved ones know how special they are to me.
I am sure I have a long life ahead of me, but most people go through life never knowing how precious their life is–to me, and to others. While I felt so worn down, so fragile in the days following each diagnosis, the life I saw around me was so vibrant and beautiful, I wanted to be a part of it, no matter what it cost me to get out of the bloody bed.
So I’m now going to write more words in the form of my first novel (yay to more firsts!), love my family more fiercely, and treasure the amazing people in my life that got me through the most difficult three months in my life: my boss, who has gone above and beyond to accommodate my absences and limitations this has caused me at work; the various medical teams, whose actions put my life on a more even keel; my friends in Santa Fe, whom wrapped me up in love and delicious food and a multitude of geeky gifts at Christmas; the special people across the interwebs and country borders, who stayed with me constantly online whenever I needed a mental shoulder to lean on (you know who you are! <3).
Thank you for showing me what it means to live these past few months. I will treasure the life you have all given me.
The last three-four months in pictures. Me living life: