Greetings! The Unleashed One here. I hope that everyone is having a terrific day thus far, and if you aren't, I send hope that the day will get better for you.
Is it just me, or does the time between Halloween and the end of the year accelerate? I don't know whether it's because of the time change or that there are a plethora of holidays in between. I know, for me, it can feel like a blur, and I'm never truly prepared when it happens.
By the title, you're probably already curious as to what this development is. I will be jumping around in time, but it's necessary to get a clear picture of what's transpired.
Without further delay ...
Mid-December 1998 #NoTypo
It was close to my finals for the fall semester of my junior year at college. I was not one of those fortunate people that could cruise around (Read: No vehicle), so I walked to each of my classes. Some of my classes were as far as ten minutes from my dorm room.
On one particular day, I was leaving from my fine arts class to my dorm room when I noticed that my leg was in pain. My legs typically didn't hurt from walking (by now, I'd gotten used to the trip). It was made even stranger that it was just one leg ... my right leg.
When I got in, I made a call to my grandma. After explaining the situation to her, she believed it was just muscle pain and advised me to rub ointment on the area. To me, that explanation made sense, and since I didn't want to miss days leading up to my finals, I rubbed with some ointment, believing that it would help.
The ointment did help in the moment, so I kept on studying and trucking. Over the next few days, I noticed that my clothes weren't fitting properly. Not because I had gained any weight around the belly, but because I picked up that my pants were fitting tighter around my right leg. I told myself that if it didn't get better during finals week, I would go and see the campus doctor.
Not even a couple of days later, I encountered my friend at the time, who was a nursing major. He saw the condition of not only my right leg, but also saw that my left leg was swelling. After telling him I was in pain, he insisted that I go to the campus doctor right away.
Note: I do have a pretty high pain tolerance, but I'll save that for another blog.
Next thing I know, the campus doctor tells me that there's not much he can do ... that the situation is much more serious than they can handle. I am rushed to the hospital back home. My grandparents also get notified.
In short, I had several blood clots. They started in my right leg and started spreading to the left leg as well. I was in the hospital for close to two weeks as they went through the process to deal with the clots. After I was released from the hospital, I was placed on coumadin and remained on that medication for almost a year and a half.
The emergency staff concluded that it was a side effect of the birth control pills I was on, and from that point forward, I was limited to what contraceptives I could use. Being on anything that had similar ingredients to birth control pills was too high risk. In short, it was either a diaphragm, cervical cap, female condom, and/or dependent on my partner to take proper precautions.
Mid-August (Current Year)
It was my onsite day at the job. I was breaking in the new dress I'd gotten from Shein. The day was relatively pleasant. I arrive there somewhat early to not only get a close parking spot but to give myself time to do an early morning walk before officially kickstarting the day.
In the latter part of my fifteen-minute walk, I felt a sharp pain in my right calf. I was at the end of the walk anyway, so I went inside to log in to work. As I sat there, the pain subsided, but I noticed that my right calf was very warm to the touch. I touched my left calf but it didn't have that warmth.
Around 10:30 or so, I went on my fifteen-minute break. I once again attempted to do my walking ritual. Close to halfway, there was pain. More intense and again, my right calf. I cut the walk halfway, went back inside the building.
I thought about the last time I had these symptoms and settled on when I had the clots back in 1998. However, this didn't make sense to me because I wasn't on any birth control that could bring forth that side effect. Yet, I couldn't ignore the similarities. The sharp pain. The warmth. And as I looked down at my stocking-covered leg, some swelling.
I sent a message to my primary care doctor, asking about the next steps I should take. I decided I wasn't going to go on my thirty-minute walk during my lunch hour. I resumed work, then after a moment, went to the break room and the bathroom.
Once I returned to my desk, I saw I had missed calls. It was from the doctor's office, letting me know they had a cancellation and if I could be there by 1. By this time, it was close to 12:30. I sent my boss a message en route as I grabbed my purse and made my way over there.
My PCP took a look at my right leg and asked me how I concluded it may be a clot. I recounted my experience way back when (which should have been in my chart but I wasn't in the space to be flippant) and how the symptoms were in line with such. I confessed to being confused because of how the cause was linked to birth control pills and that I hadn't been on birth control medication since the incident happened.
My doctor was in agreement, said she was glad I came in, and made calls to schedule an ultrasound that day. They bumped me up in the line and told the hospital it was an emergency.
I contacted my boss to tell her that I wouldn't be in for the rest of the day but that I would stop by to log off my computer before heading to the hospital for the ultrasound.
It only took about five minutes before the ultrasound tech confirmed my suspicion. The blood clot was back. She checked the rest of my leg and the left leg. Luckily, there were no other clots, just the very sizeable one.
Mid-September (Current Year)
I noticed that my glucose numbers were ticking upward despite no change in my diet or eating habits. I brought this concern up to the hematologist but stated that I should not be concerned since Eliquis isn't known to cause this. When I came across forums of individuals who were encountering the same thing, I reached out to my endocrinologist. I had been off of my diabetes medication since last year due to my A1C and glucose being so well controlled. After talking with my endocrinologist, he re-prescribed my diabetes medication and told me to compare the numbers being on the medication vs when I come off of the diabetes medication. Needless to say that once the diabetes medicine was reintroduced, my numbers were back to where they should.
November 21st (Current Year)
I had a follow-up appointment with the vascular surgeon to check on the clot. After performing a same-day ultrasound, it was discovered that the huge clot was gone. However, there was some scarring that the vascular doctor would like to see less of. As far as how long I'd be on the Eliquis, the doctor would fall in line with the hematologist. However, I was optimistic, thinking I wouldn't be on the medication much longer because the immediate threat was gone.
After waiting forty-five minutes for my eight o'clock appointment, I finally see the hematologist. I won't go into my level of agitation with how unprofessionally the lateness was conveyed ... because that is irrelevant to the point. The extended blood work was in ... and it turns out that I have an inherited blood clotting disorder called homozygous Factor V Leiden. Homozygous means that both my mother and the blank space on my birth certificate (father) had a copy of the Factor V Leiden mutation, and I hold both copies of the mutated gene.
In simple terms, I have a deficiency in the protein that controls clotting, which causes my body to produce an overabundance of clots. The clots most commonly form in the leg (DVT) but can also form in other parts of the body, such as the arms, lungs, and brain. There is no cure for this rare disorder or any prediction of when clots can return. All one can do is be on anticoagulant medication and to take steps to ensure that one won't reoccur.
When I asked the hematologist about the length of time he wants to keep me on the Eliquis, he didn't give the most direct of answers. He did tell me that he couldn't make me stay on the medication, since the blood clot was gone. All he could do was advise me of the potential dangers of what could happen if I were to get off of it.
After hearing the news, all I could think about was how other medical conditions I am battling with have impacted my treatment of the rest. My reflex reaction was to just get off of it completely, but I didn't want to decide at that moment. I went into research mode ... natural remedies, vitamins, and supplements that could serve as a substitute for this pharmaceutical that was making my glucose elevated and unable to effectively treat my arthritis.
No amount of research; no amount of positive thinking; no amount of reframing the narrative could stop the crash of anguish, anger, and hurt that hit me yesterday.
It took me three days to grieve over yet another thing that I thought would be "one and done" ended up being ... well, not.
I was angry that the mutation wasn't found sooner ... that the symptom was treated rather than the root cause and that no further bloodwork was done way back when. Perhaps if I would have known in 1998 what I know now in 2022 I could have taken the steps to prevent this occurrence from happening again. I dang sure wouldn't have gotten on those birth control pills, which triggered my very first episode.
I was angry that for each step I took into being proactive with my health, more unknowns are popping up to the surface ... rare unknowns, at that.
I was sad that there's one part of my family tree I know nothing about and that there weren't these extensive conversations about medical conditions, predispositions to diseases, and the like during the time when I was growing up. I accept that perhaps all were ignorant and that the doctors didn't even test them, but it doesn't make me feel any less sad for giving them grace.
I'm in a better space. Knowing that I have this rare disorder solidifies that I made the right decision as it pertains to having kids. I haven't made a clear-cut decision as to how much longer I'll be on the Eliquis but will update this space once I do.
Right now, I'm seeking community and support services for individuals who have this same thing. Have they gone through the same emotions I am currently experiencing? Did they decide to stay on their prescribed medicines, or did they choose a different route? I know that my closest friends are available, but I'm not in that space where I can speak about it without being overcome with emotions. I'm not quite there with the "I'll be okay." I know I'll get there, but it just won't be today.
However, I'm taking this first big step. Writing about this. Perhaps there are others out there who have this disorder, and I just want to let them know that they aren't alone.
One has to get out of this space of not talking or learning about one's medical history. If there's a way to prevent a child from having an untreatable disorder, wouldn't one want to do so?
Also, listen to your body. Pay attention to any changes. Yes, doctors have wisdom, but they can even miss the signs. They aren't in your body. They aren't operating in your day-to-day. In a world where there are lots of patients and not enough doctors, gone are the days of one-on-one care and the expectation of the medical staff to have an innate sense of empathy.
If you have stuck around this long, thanks for taking the time to read.