Living with Factor V Leiden
Pursuing the Fight - Insights from Alissa Hall
You are your own advocate
Before September 2018, I was perfectly healthy. My primary care doctor begged me to come in for checkups as I would easily go several years without needing her. Life was perfect… I was a newlywed as of May, loving life with my new husband and two dogs. I was working several days a week and enjoying decorating our newly lived-in apartment in Boise, Idaho.
Then out of nowhere the headaches started in late August. It was constant and each day became progressively worse. Though the head pain was brutal, my husband tells me I complained about the neck pain the most. I tried ibuprofen, dark, quiet rooms, cold washcloths on my forehead, neck rubs…. all pointless. The pain took me as prisoner. After one week of suffering through it, I finally gave in and went to urgent care who sent me to the emergency room for further testing.
I’ll never forget that ER visit. It was one of the worst experiences. I was treated like such a burden, almost as if they thought I was faking it. I was given medication to try to relieve the pain, but that didn’t quite do the job. I just felt worse and couldn’t get my body to stop shaking. The only test I received during this visit was a CT scan that came up clean. They wrote me off as just complaining of a migraine and sent me home with stronger medication.
The next week after leaving my first ER trip is sadly a blur. The pain was UNBEARABLE. I called in sick several days… no way was it possible to push through it. Not long into the second week, the pain was so intense it caused constant vomiting. My body couldn’t take it, so for 2-3 days I did nothing but sleep. Being awake and dealing with the intense discomfort wasn’t worth it. I avoided going back to the hospital. They had me so convinced I was crazy and it was just a migraine that I didn’t see a point. (Nor wanted to pay that bill if they were right). My family’s concern was through the roof (rightfully so) and they talked me into going back to the ER.
This visit was when we finally received some answers…but not without a fight. Once again, I was told that if the CT came up clean, then it’s most likely just a really intense migraine and they gave me stronger pain medication. Eventually, my doctor came back with another option. I remember him saying “Well, I GUESS we could run an MRI but I HIGHLY DOUBT it’ll show anything.” He was so confident… HA! How wrong he was… that MRI he swore would come back clean showed us everything we needed to know. Several clots on the left side of the brain were cutting off so much of the blood supply that he had to really zoom in to show me where very little blood was still getting through. Though it had been a fight, I was so thankful to finally have an answer… and not feel like I was just complaining about a migraine like everyone had said. A panel of blood tests were ran and it was discovered that I was heterozygous for the Factor V Leiden mutation. I was placed on Eliquis and told the clots would dissolve in about 3-6 months.
While those two weeks were hard, I never expected that the rest of my life going forward would be harder. This diagnosis really changed my life. While I was expecting a 3–6 month recovery time, odds were not in my favor. I sit here now, almost three years later, with the same clots still living in my brain where they were first discovered. My doctors have informed me that my clots have unfortunately not dissolved but instead scarred. The only way to get rid of them is surgery, however the survival rate is dangerously low so it will never be performed. I was told that I would be on anticoagulants for the rest of my life.
It’s not easy… enduring the daily headaches and becoming exhausted from very little activity. I bruise easily and the anxiety and fear of re-clotting is enough to eat you alive. I had to quit my job. The depression from it all sits heavily. It’s been a struggle to maneuver through this new life I never expected to live. I no longer have to be begged to see my doctor as I now see my primary doctor, hematologist, and neurologist on a regular basis.
From what I’ve lived through, the two main things to take away from this are:
You HAVE to stick up for yourself and be your own advocate. You know your body better than anyone else. If you feel something is wrong, go have tests done and find answers, if even for peace of mind. I’ve been told by my doctors that, had I been turned away at my second ER visit, I maybe had a couple days left before it would’ve killed me. You have to take care of yourself.
And second, taking care of yourself also means surrounding yourself with a strong support system. A loving family, amazing friends, knowledgeable doctors and even other people that fully understand. So, I strongly recommend joining a support system on social media. At the very least, know that I’m here for you and would love to chat if you have questions, need support, or just need someone to talk to about everything. I know firsthand that it’s overwhelming, but you’re not alone.
So please feel free to reach out, my inbox is always open: info@factorv.org
Take care of yourself, friends
