When I developed my first clot, I was undergoing immunotherapy for stage 4 metastatic melanoma. My regimen was four infusions, five weeks apart, to boost the immune system and help fight the cancer. After that, I received additional infusions at a lower dosage.
At first, I had no side effects other than fatigue, then I was hit with horrible abdominal pain, and was taken to the ER. The diagnosis was mesenteric eschemia, in which where blood flow in the superior mesenteric vein in the intestine is blocked by a blood clot.
I was told to call my family because I would never leave the ICU. But I’m a fighter and told them to just watch me. Somehow, I was discharged a week later and given a prescription for warfarin. No matter what I did, there was never a therapeutic level reached. I was then switched to enoxaparin twice a day.
My hematologist tested me for everything under the sun, as did a genetics specialist. I carry not a single gene that could explain the clots. (I also carry no cancer genres and yet this was my fourth primary cancer).
On top of everything else, I have long QT syndrome, a heart rhythm disorder, and needed an ablation on my heart. The plan was to go off of enoxaparin for 48 hours prior and then resume the morning after the ablation. Two weeks later, I was back in the ER with a new clot.
My right portal vein is completely occluded, which has caused stage 4 scarring on my liver. My superior mesenteric vein is also occluded. I underwent a procedure where a coil was placed in an attempt to restore blood flow, but it failed within six hours, so I had emergency surgery to remove it. At this point, the doctors tell me the most we can hope for is to prevent new blood clots.
The good news is that I am in remission from the cancer. Now if we could just restore some blood flow. The current plan is enoxaparin for life.
I am told that I should not take long flights, and even long drives could be dangerous. My dream is to go to Scotland, but with the clots, it’s terrifying to try and plan it.
My advice to others: don’t ever miss a dose of medication. And be the squeaky wheel. Fight for yourself, and don’t ever give up!
