Interview with Stephanie Arnold AFE: Amniotic Fluid Embolism
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I had the pleasure of interviewing Stephanie Arnold regarding her experience with AFE (Amniotic Fluid Embolism). Read how Stephanie used this life-threatening experience to change her life and the lives of others.
1. AFE: Can you provide details about what this is and how it affects someone?
An AFE or Amniotic Fluid Embolism is a condition where amniotic cells get into the mother’s bloodstream and if the mother HAPPENS to be allergic to the cells, she will go into anaphylactic shock and usually die. It is a rare occurrence about 1 in 15,200 women will be affected, but if it happens to you it can be catastrophic. It comes in two phases. The first phase is cardiac arrest, lungs shut down and shock when one seizes. In my case, that is where I coded. About 40% will not make it through that phase. If you are lucky enough to make it past this, then Phase 2 starts. It is where the AFE stops the clotting capability in your blood. So you can hemorrhage to death. Some studies say as many as 85% don’t make it out of the operating room. For more information about AFE’s and the research being done, please go to http://www.AFESUPPORT.org for the latest as they are more up to date than your doctors.
2. Are there any warnings that a patient could potentially suffer from AFE?
None. In my case I had very powerful premonitions and an overwhelming sense of foreboding. They say there have been many cases where women would feel these kind of feelings prior to an AFE. But if you are not aware of your body, you might think you were crazy and try to compartmentalize those fears. The doctors are looking into monitoring the EKG closer to see during childbirth if there are warning signs, but that would only give the doctors a minute or awareness, not much time if you are in an unprepared environment.
3. Are you normally an anxious person?
Not at all. I am incredibly organized and Type A. I was a reality TV producer prior to this and made a living by being in the thick of pressure. I loved it.
4. What made your feelings of impending doom different from traditional worry?
I felt it with every cell in my body. I had given birth to a baby before by C-section and so I knew what to expect with childbirth. The fear of giving birth the first time and what I was feeling was VERY different. I felt this doom feeling on a cellular level. It was painful to feel like a ticking time bomb and no one was listening to try and save me. But in their defense, there was nothing from a testing level they could have done to predict what could have happened. I have had premonitions my entire life, just nothing as foreboding as this case was. So the difference between traditional worry and this was substantial.
5. Can you elaborate more on your relationship with your doctor? Obviously, you trusted her and she understood your feelings.
I LOVE my doctor. She delivered my daughter. I trust her. She is compassionate and never made me feel like I was crazy. She understood, but had nothing tangible to go on why I was feeling this way. So she gave me options to talk to people, nurses, and doctors. When I wanted to go see a Gyn/Onc specialist, she thought it would be a good idea and was supportive, although I don’t think she believed what would happen would ever have happened. I was the first AFE in their practice and all of these doctors are quite seasoned.
6. What is your new life goal?
To savor every moment. People say that all the time. But after clinically dying and coming back, I have been given a second chance and every moment counts. I’m human with good and bad days. But when I get my groceries or speak to someone I have never met, I make those moments count and I am present in those moments. Those people are giving me their time and I value that. Any day above ground is a good day. I am much, much more empathetic than ever. I was obese with fluid from Edema and I was truly unhealthy and could not hold my newborn, let alone spend time with my daughter or my stepdaughter because I wasn’t coherent. My family is THE most important thing to me. My husband is everything to me. His love and his support gets me through every single day. I was on LOW VOLTAGE with my intuition because people would look at me like I was a freak if I talked about things I saw, then I lost all electricity in my body, now I am on HIGH VOLTAGE or supercharged and I won’t let anyone make me feel like a freak when I see things. If I SENSE something, I SAY something. I am not afraid to be judged anymore. And if it will save a life, I will definitely speak up, because it saved mine.
7. Does having a complete placenta previa make you a candidate for AFE?
It is one factor, but there really isn’t a set number of criteria that makes one person higher at risk than others. AFE’s are UNPREDICTABLE, UNPREVENTABLE and usually FATAL.
For more factors and information, go to http://www.AFESUPPORT.org.
8. How did your family survive without you while you were in the hospital?
They say it takes a village. It did. Neighbors were there for us, family flew in. My sister, Jonathan’s sister, everyone came in to take care of Adina. The hospital let Jacob stay with me for the month. My stepdaughter Valentina was incredible, being the big sister. And my husband was my rock. Imagine running back and forth between hospitals (ICU and Maternity ward) all the while keeping positive when the doctors were saying it might not end well. The community came together and prayed. Other communities prayed. One doctor said she couldn’t give me a medical reason why I survived, so I needed to go SPIRITUAL on this one. And she was right. My family leaned heavily on the community of prayers and our spiritual leaders.
9. What advice would you offer others so they can more effectively help families with a loved one in the hospital?
If they have a feeling of something, SAY IT. What is the worst that can happen, you are wrong? Well, I would have been ecstatic to have been wrong and never gone thru what I went through. But if family members are feeling ignored, they need to speak up, even if they feel intimidated. The doctors don’t know everything. And sometimes, some information you give them might help, especially if you are giving your loved one a voice when they cannot speak. You will regret not saying something if it takes a turn for the worse. And never give up believing they are going to be ok. All of the doctors told my husband it didn’t look good and even if she comes off of life support, we don’t know how much neurological damage there might be. He wouldn’t listen to it. I HAD to be fine.
10. Is IVF related to AFE? I saw a fair amount of information on your Facebook page about it.
IVF is not related to it. I did go through 7 rounds of IVF. Is there an increased risk for an AFE? No idea but that is why the AFE Foundation is doing their work to have everyone affected by an AFE register on their national registry so they can have some sort of guideline for high risk patients who might fit into a category and the team of health care professionals can be prepared in the event of an AFE. My doctors will tell you, I survived because I was in the right place with the right, experienced team and they were prepared, but that I prepared them. If we can understand this condition more and there are signs that doctors are missing and they can be predetermined, that will help in saving one’s life. It won’t prevent it, but if they can lessen the risk by being prepared for the AFE, the likelihood of surviving an AFE and surviving well, would increase exponentially.
Stephanie used this experience to face her fears and embrace her life to live it to the fullest. Thanks for sharing your story, Stephanie!