Hospital Stay, pt. 2

As some of you may know, I had to stay in the hospital for a few days back in April. I honestly could've almost died if we hadn't figured out that something was wrong. Now that I'm in the hospital for a second time in the span of six months, I thought it may be time to make a blog post about it so you all were aware, in case this continues to happen. (as of posting this, I haven't even been discharged yet)

The Story:

So, I've always had health problems, for as long as I can remember. I have some pretty serious diseases/syndromes: Ehlers Danlos Syndrome, Fibromyalgia, and too many others to list.

Because of the Ehlers Danlos Syndrome, I have really terrible knees. So, I used to wear these knee braces, kind of like a sleeve that puts compression on your knees, and I'd wear these every day to lessen the pain on my knees, and keep them from dislocating. But, I noticed one day that my left leg was...hard, is the only way I can describe it. It was hard, swollen, discolored and painful. I sounds silly, but I searched online "what does a blood clot feel like", and I hit every symptom. I called my primary care doctor and told him all of this, and he told me to get to the emergency room ASAP. 

4/20/21 -

In the emergency room, they did an ultrasound of my left leg. The doctor came back and told me that I had multiple blood clots throughout my left leg, and honestly, I was scared shitless. When you have a blood clot in any of your extremities (legs, arms) it can travel to your lungs, so they immediately did a CT scan with contrast of my chest. Again, the doctor came back to see me, and she told me that I had multiple blood clots throughout both my lungs. For some, this could be a death sentence; especially when the clots start to put stress on your heart. Thankfully, they did an echocardiogram, and we caught the blood clots before they started to put stress on my heart.

They hooked me up to an IV blood thinner, heparin, and sent me in an ambulance to the hospital. I had gone to kind of an ER/walk-in clinic, so I had to be sent to the actual hospital. For that hospital stay, I only stayed 3 or 4 days (which was definitely not enough), I was on IV heparin for no more than 12-16 hours, and then they started me on an oral blood thinner, Xarelto. 

While I was in the hospital, they tested me for every single kind of disease/illness/syndrome that could cause blood clots. When I was released from the hospital, I saw my hematologist, who told me that I had came back positive for Factor V Leiden (pronounced Factor 5 Leiden). It's a genetic mutation that can cause blood clots. Here's a bit of a better description of it.

Factor V Leiden:

Factor V Leiden is an inherited disorder of blood clotting. Factor V Leiden is the name of a specific gene mutation that results in thrombophilia, which is an increased tendency to form abnormal blood clots that can block blood vessels.

People with Factor V Leiden have a higher than average risk of developing a type of blood clot called a deep vein thrombosis (DVT). DVTs occur most often in the legs, although they can also occur in other parts of the body, including the brain, eyes, liver, and kidneys. Factor V Leiden also increases the risk that clots will break away from their original site and travel through the bloodstream. These clots can lodge in the lungs, where they are known as pulmonary embolism. Although Factor V Leiden increases the risk of blood clots, only about 10% of individuals with the Factor V Leiden mutation ever develop abnormal clots.

9/9/21 -

The afternoon of 9/9, my right leg felt hard, just like the last time. So, I called my hematologist's office and let them know, and they sent me back to the same hospital for another ultrasound of both legs. Come to find out, the original blood clots in my left leg never fully went away, and I grew new ones in my right leg. Thankfully, this time my lungs were clear of blood clots. Obviously, the blood thinner I had been on for about 6 months, Xarelto, didn't do it's job. There are a few blood thinners other than Xarelto, there's Coumadin, and then there's two that are in the same "class" as Xarelto. Because they are in the same "class", it means that those blood thinners wouldn't work for me either. So until they invent a new type of blood thinner, I'm destined to be on Coumadin for life. 

They had me on just the IV blood thinner, heparin, for the first few days I was here in the hospital. Slowly, they added in the oral blood thinner, Coumadin. At first, the hospital hematologist said I may have to stay in the hospital for a week to balance out my INR (described below). Then a few days later he came in and said I may not have to stay as long. Turns out I did end up having to stay the full week as I found out as they kept adding on day, after day, after day.

What INR is:

This ratio — which allows for easier comparisons of test results from different laboratories — is used if you take blood-thinning medications.

In healthy people an INR of 1.1 or below is considered normal. An INR range of 2.0 to 3.0 is generally an effective therapeutic range for people taking warfarin for disorders such as atrial fibrillation or a blood clot in the leg or lung. In certain situations, such as having a mechanical heart valve, you might need a slightly higher INR.

When the INR is higher than the recommended range, it means that your blood clots more slowly than desired, and a lower INR means your blood clots more quickly than desired.

What your results mean

Clotting too slowly

Blood that clots too slowly can be caused by:

• Blood-thinning medications
• Liver problems
• Inadequate levels of proteins that cause blood to clot
• Vitamin K deficiency
• Other substances in your blood that hinder the work of clotting factors

Clotting too fast

Blood that clots too quickly can be caused by:

• Supplements that contain vitamin K
• High intake of foods that contain vitamin K, such as liver, broccoli, chickpeas, green tea, kale, turnip greens and products that contain soybeans
• Estrogen-containing medications, such as birth control pills and hormone replacement therapy

My INR went from 5.2 (too high), to 6.6 (extremely way too high), down to 2.3 (good). When it was 6.6 it was so extremely high, they needed to give me a dose of Vitamin K, which brings down your INR. But today it was 2.3, so while that was a good level, it was too dangerously big of a jump, so they gave me some Coumadin (blood thinner) tonight to try to balance it out. So, fingers crossed I'll be able to get out tomorrow. Tomorrow is 9/16, which will make a full week that I've been here. Thankfully I've had my laptop, iPad, and phone with me the whole time I've been here, so I haven't been too terribly bored. I've also been sleeping a lot, since being sick and in pain takes so much out of you. The food here has been really great, and all the nurses and techs are so nice. My hospital doctor is really nice and super smart too.

So, if you haven't gotten your orders yet, please understand that I've been in the hospital for a week, but they're all at home almost ready to send off!! I really do apologize, but my health does have to come first.