You may recall that in 2015, I had quite an exciting week when I had a small pulmonary embolism and ended up in the hospital via a very
exciting terrifying ambulance ride. They found a large blood clot in my left leg that day by ultrasound. A few months later, after I got off of coumadin, I was tested for a variety of clotting disorders and they found that I have Factor V Leiden, a mutation of one of the clotting factors in the blood that increases your chance of developing clots. You can be heterozygous (one copy of the gene) or homozygous (two copies of the gene). Homozygous is supposed to be the more dangerous of the two. I am heterozygous.
I went on a hike recently and my legs were killing me. I assumed it was just because I was extremely extremely out of shape, but over the past few weeks my legs have really hurt and been swollen. I’ve spent a lot of time in the car recently (even though I get out to walk every hour or hour and a half) and I became worried that I may have another blood clot, particularly a few nights ago when the pain was so bad that I had to take a leftover pain pill from the last time I had a clot. I expressed this concern to my dear friend, Monica, and she urged me to go to the doctor. Early the next morning, I sent a message to my doctor via our patient portal explaining the situation and saying that I thought I needed an ultrasound. She replied as soon as the office opened saying that I should be there at 10:50 for an ultrasound and that I would have an appointment with her immediately after.
The ultrasound took about an hour as they did both of my legs. River was very well behaved. She got up once from her spot but came over to lay by me and didn’t move again until the ultrasound was over. I expressed concern to the ultrasound technician when she hovered over a specific spot for a very long time, but she assured me she just wanted to be thorough. After the ultrasound, I went back to the waiting room and was called in by my doctor’s nurse shortly thereafter. She asked me some questions and left to scan in a copy of the genetic testing I had done (it tells you which medications are best for you and which to avoid) to my file. She left a sheet of paper behind, which I am sure she didn’t mean to do. I took a picture of it.
The doctor came in and told me that the results were inconclusive for a DVT but that it was likely that I had one and that the ultrasound technician had sent my ultrasound to the radiologist with a request for a rush read on it. My doctor wrote me prescriptions for Lovenox and Coumadin but told me to wait to get them filled until I heard for sure whether or not I had a clot. She told me it was a different dosage of Lovenox from the last time I had a clot and that the pharmacy may not have it on hand and I may have to go to another pharmacy.
I left, much calmer than I thought I would be after seeing on a sheet of paper that I had multiple potential clots, and went straight to the pharmacy. I figured that if they were going to need to order the Lovenox and Coumadin, it would be best if I went ahead and had them filled. I reasoned that I could always not pick them up and tell the pharmacy I didn’t need them anymore if I didn’t have a clot. The pharmacy didn’t have the medication but they ordered it and said it would be in the next morning. The nurse called while I was still at the pharmacy waiting for my pain medication the doctor had given me and said they had found a clot in the low part of my right leg. There was nothing I could do about it at the moment, so I went home and propped my legs up, as I had been told to do.
When I got home, I realized I had a lot of questions about my clot that hadn’t been answered. Where exactly was it? How big was it? Did it block the vein completely or only part of the way? I sent these questions to my doctor via the patient portal and this was her response:
Nonoccluisive clot in femoral vein on right; non occlusive clot in popliteal vein on right; occlusive clot of peroneal vein on right and non occlusive clot of left femoral vein. non occlusive means the vessel is not totally blocked that blood is getting past the clot So there are multiple clots in the right leg and “only” one in the left. It is fairly extensive! They do not comment on the old clot so I suspect it has reabsorbed. No wonder you are hurting. Try to take it easy and keep legs elevated. No strenuous activity. Don’t do much at all for the next few days.
So while the nurse told me I had one clot, I actually have FOUR clots and one of them is blocking the whole vein. One clot would be scary. Four is terrifying. Until the blood thinners are in my system at the correct level, I am at risk of part of any of the clots breaking off and going to my lungs (causing a pulmonary embolism) or heart, or brain. For the next 2-6 days I will be very anxious. I have no doubt I’ll have at least one panic attack, which will feel like a pulmonary embolism, which will be terrifying. I went to the pharmacy yesterday morning, picked up the Lovenox, and immediately gave myself the shot in my stomach in my car, not wanting to wait a single second more. I give myself a shot of the Lovenox every twelve hours and I started the Coumadin last night. My INR level will be checked on Wednesday. That’s how they measure if there’s enough Coumadin in my system or not.
I messaged my doctor today asking for a referral to a hematologist. She said there wasn’t really any point in going as I’ll now be on Coumadin for life and it’s not as though they can take me off of it to do any testing, but she agreed to make the referral since it would make me more comfortable. I have questions that I want to ask the hematologist and I imagine that my parents do as well. Plus almost everyone in my Facebook Factor V Leiden Support Group has a hematologist, so it seems like I should have one, too.
Anyways, that’s what’s going on with me!