Life After A Pulmonary Embolism And Factor V Leiden Diagnosis - A Story Of Survival And Recovery
The Importance Of Lifelong Healing After Diagnosis
Pulmonary embolisms, blood clots in the lungs, are potentially fatal. They damage your lungs and potentially your heart. It is chilling to know that it is believed that up to 30% of people with pulmonary embolisms die before ever even seeking a diagnosis. This knowledge as well as the bodily damage that is done takes a toll on the survivor. Survivors are also often saddled with a new diagnosis of Factor V Leiden or another thrombophilia (blood clotting condition). In my other hubs I have covered a number of topics relating to healing and coping with the aftermath of these conditions. I have not covered a very important topic, what is it like to be alive years down the road with a history of pulmonary embolism or a thrombophilia diagnosis. This hub will cover those topics. I will share with you what my experiences have been since I made my full recovery. If this is your first reading of any of my clotting hubs, I suggest that you go back and read some of my hubs about recovery as I will not cover those here. This hub will be focussed on the recent years rather than those closer to my diagnosis.
Healing never ends. You are not abnormal if you find yourself dealing with your clots in some manner for the rest of your life. It is a healthy thing to make sure that you are safe and clot free. here is my story.
In The Beginning...
Let me start with July 18, 2008. That is the date that I now consider my second birthday. It is very important to me as July 18 is my parent's anniversary as well as the date that I entered the emergency room and was diagnosed with multiple, massive, bilateral, pulmonary emboli. I had been unwell for weeks. I was relieved to have a diagnosis and to be taken seriously. I was in the hospital for close to two weeks. During this time I had a leg ultrasound that showed no clots, a trans thoracic echocardiogram that showed no heart damage and no patent foramen oval (hole in the heart) that clots could pass through. I was placed on a heparin drip. For the first few days I was bedridden. I missed washing my hair independently. I was hooked onto an EKG and often had nurses order me back to bed because my heart rate was spiking to 148 when I was trying to change my hospital gown. I asked for a hematology consult on the recommendation of a wonderful nurse. My new hematologist diagnosed me with heterozygous Factor V Leiden. I started warfarin anticoagulation therapy and found out I would be on it for at least a year. I learned how to give myself low molecular weight heparins. I went home and slept, and slept and slept. Then slowly I healed. Two years later I could finally say I was back where I was.
Medical Care After A Pulmonary Embolism Changes
After my pulmonary embolism I began to carry my CT scans everywhere. Doctors needed to know what my body had been through. I still have the file. It no longer travels with me. I will be keeping the full hospital record and scans. I have no idea if I will ever need to share the history with any more doctors, but if I do, I am ready.
Whenever I fill out medical history forms I have to figure out where pulmonary embolism fits in. I have to be able to tell doctors and nurses when I had my clots, what my treatment was, that I have Factor V Leiden, and that I am no longer on warfarin and why I am not on warfarin. I hear a lot of misinformation from the medical community regarding my clots and what treatment I should be on now. I have done my research and I am confident in what I am doing but it worries me none the less. A lot of the worry is that they may not know how to treat me. That is a shocking revelation.
Clotting has interesting impacts on a survivors future medical care. Birth control is now a big deal as it can cause clots. Pregnancy also can cause clots. Simple surgery is also a concern. Having my sinuses cleared out will need special equipment to keep my blood moving while I am under anesthesia. I worry about what I need to do know and do whenever I have to start a new medication, have a procedure done, or consider changes to my body.
I think about possible clots when major health events happen. When H1N1 was going around a few years back, many people who were hospitalized were developing unusual blood clots. Alarms went off in my head. I immediately got a pneumonia shot and the seasonal flu shot to try to protect myself. I can't risk having new blood clots. They are dangerous and they may mean having to take anticoagulation for life.
Mental Health And Knowing You Are Mortal
The fear of clots and death are very strong when you are first diagnosed. To those that are still healing, it does get better. Note that I didn't tell you that it goes away. I worry about clots. It is always there sitting quietly in the back of my mind.
- I had an odd little lump on my shin yesterday. It turned out it was a bruise. I was worried it was a clot for about an hour.
- I always have to stop every 2 hours while traveling. Even with the stops I wonder...
- I had sinus surgery. The clotting risk worried me. I had to be cleared by my hematologist before my surgery. The surgery team used pneumatic leg cuffs to keep my blood moving while I was sedated.
- I have to get up and walk in the middle of college lectures. A 5 hour class is risky.
As you can see, it doesn't stop. You will know you are mortal. This has some benefits. I am more confident about myself now. I survived. My body survived. I also have regrets that 2 years were stolen from me.
What About Physical Health And Lasting Health Problems After A Pulmonary Embolism
My body is very healthy. I don't see any residual effects from the clots. I wonder sometimes in a CT scan would show any scar tissue in my lungs. After all, they collapsed from lack of oxygen due to the clots.
I am often asked by readers how I feel now. I have to say great. It took a lot of patience but July 18, 2008 is behind me. I am off of warfarin. I don't see my hematologist for routine check ins anymore. I have had no additional clots. My breathing is fine. My heart rate is back where it was before the clots.
You will heal. Four years out life is looking good.
Factor V Leiden, A History Of Pulmonary Embolism, And "Disability" Status
I don't feel disabled. I don't look disabled. One of the odd things about me now is that legally I have a disability. When I fly, sit, work, go to school I have to have access to liquids and be able to move around. When I fly I work with a disability coordinator to get a seat with leg room or an aisle so I can move in flight easily. It floored me the first time I was told that "we will accommodate your disability". To prevent future clots make sure that you keep moving. If you need disability accommodations, ask. It feels odd being "disabled" but the label has been a huge help in helping me to take care of my body so that it lasts a bit longer.
Here To Help
If you have any questions about my life now, please share in the comments or contact me through Hubpages. I am happy to let you know what life is like once you heal. If I missed anything I want to make sure that it gets included, so just give me a heads up.