A Survivor Speaks: My Factor V Leiden Miracles by Cathy Westveer

Hi my name is Cathy Westveer. This is my story about how I found out how I have Factor V Leiden heterozygous mutation. Back in 2002, my daughter, Britaney was about four months old; I was on the pill, and smoking. I started having left calf pain. I went to the doctor and the doctor ordered an ultrasound. Everything came back fine. A week went by the pain and swelling got progressively worst. My left leg was at least two times the size of my right leg; I was starting to have a hard time bearing weight on it. At that point, my husband, Ken took me to the hospital; they did not order an ultrasound because the one I had a week before that was negative. They diagnosed me with a strain/sprain and put an ace bandage on my left leg, and send me on my way.

By the end of week two I could not bear any weight at all on my left leg.  Ken was pushing me around in a wheel chair. Beyond frustrated, and in immense pain, it felt like someone was constantly jamming a knife in my  left  leg and hitting  my bone with it, that is the only way I can describe the pain. When I hit week three Ken was getting frustrated and really worried, he took me back to the doctor, I put up a fight, because I was worried my doctor would think I was a hypochondriac  at this point. My left leg was at least five times its original size and many different colors. I was in so much pain and having a really hard time nursing Britaney.

In our PCP’s office I was sitting in the wheel chair holding Britaney in my lap, my doctor looked at my left leg and said I might I have compartment syndrome. He told me for the length of time I had the symptoms and how bad my leg looked if that’s what it was, I may never be able to walk again. I sat there balling my eyes out, holding my daughter thinking to myself, I am only 26, and how could it be that I may never walk again?  He immediately sent me to a Vascular Surgeon, Dr. R., he said the same exact thing my doctor said, however he ordered another ultrasound, his ultrasound tech did an ultrasound. And to my surprise, shock and horror, I had multiple DVTS the entire length of my left leg!!! Dr. R. asked me if I had chest pain, or a hard time breathing? I said no. He wanted to admit me; I said only if I can have Britaney with me. He said no!  Ken and him talked a little bit, and agreed to let me go home, 72 hours bed rest, can only get up to go the bathroom. He put me on Lovenox and Coumadin. And for three weeks, he was having a lab tech came to my house every other day to draw blood to check my PT/INR. He also told me that I still had a chance of not being able to walk again, and the damage to my veins was permanent.

My PCP ordered a bunch of blood work!  And they discovered that I have Factor V Leiden Heterozygous mutation. My PCP sent me to a Hematologist, Dr. K. During my follow up with Dr. K,  he suggested me to not have any more children, but if I did I needed to talk to see him first, to talk preventative measures. About two years later we decided to have another baby. I went on Lovenox every 12 hours. We got pregnant. I had some bleeding and panic. I have had three miscarriages before my daughter, one of them I am pretty sure was a result of Factor V Leiden, because the baby had a heartbeat until 12 weeks, but that was before I knew I had Factor V Leiden Heterozygous mutation. Come to find out I had placenta Previa; I had to go on bed rest for a month. But other than that the pregnancy ran smoothly, other than the fact that my abdomen looked like a road map from the Lovenox shots, so many nasty bruises, definitely not a glamorous pregnancy.

Three days after Kenny was born, even though I was on Lovenox, Heparin, and Coumadin, I had left calf pain. Low and behold I had a surface clot. At this point my hematologist said, no babies, too much of a risk! He also told me I will never be able to go off of Coumadin. I had a hard time for years with this!  But I am now okay with it. I have two beautiful children!! Two Factor V Leiden Heterozygous mutation miracles.

In 2013 I was really having a hard time with keeping my PT/INR’S where they were supposed to be. They were all over the place. It was getting to the point that the phlebotomist who was drawing my blood weekly told me she was going to call my doctor and suggest her to have something put into my veins, because they were not letting the blood out anymore. And thanks to the Factor V Leiden groups I found on Facebook, including Forever Deborah, I heard about the self- tester for PT/INR. I brought that to my doctor’s attention. My doctor refused it to let me have it. After a good argument she broke down and told me she was going to call one of her fellow Hematologists to see what he advises!  Little did she know she called my Hematologist, and he was okay with the self-tester but he had something far better for me.

A new blood thinner, Xarelto, that was just recently approved for Factor V Leiden Patients, the only down fall with this new drug they still have not come up with an anecdote for reversing hemorrhaging, but there are not diet restrictions, and no blood work! I have been on it since March/April 2013, so far so good!  And finally living somewhat of a normal life with Factor V Leiden Heterozygous mutation!

Connect with Cathy in the comments below!

 

A Survivor Speaks: You’re Stronger than You Think You Are by Sidney Penner

The day I suffered from my P.E (November 15,2012) was a day I never thought I’d get through. The night before my P.E, I was walking from my college class to my car when I realized I was getting short of breath. That was not normal for me at the time because I was exercising every day and always out running and walking.  The next day I woke up and had terrible side pain. I thought maybe I had pulled something while exercising. As the day went on, the pain progressed more severely.

By the time my mom got home I was in my bed and couldn’t sit and couldn’t lay flat and then I remember a huge rush of pain. I went to the living room in tears, and that’s when my mom told me to get my coat on because we’re going to the E.R. I had never been to the E.R and had never even been to the doctor that much since I was always a healthy girl. After tons of blood work and a chest x-ray, the doctor came back into the room and said they saw something but wanted a better look. They took me in for a CAT scan and then came running back into my room saying, “this girl has an Acute Pulmonary Embolism in her lungs and we need to admit her now!” I remember the doctor telling my mom that if I hadn’t of came in that night, I wouldn’t have been alive. That was very scary to hear when I was only 20 years old. I was scared, because even daily tasks I wasn’t capable of doing. My mom had to help feed me, had to help me with showering, and had to help me get dressed. The pain was so bad I couldn’t do anything for myself.

If I could tell anyone about what happened I would say: I was a healthy and active 20 year old girl who never smoked, never drank, never had sex, had never been on birth control, never had injuries, never took long trips and never had family history of such an illness. This is something that can happen to skinny or big people; old or young people. I feel like there needs to be a lot more awareness for such an illness; it is the 3rd leading cause of death in America.

The one image I can clearly capture from my experience, it was when they sent me to get admitted and they were hooking up IVs and EKG’s and oxygen to me. I remember all the doctors and nurses working and then I remember my mom sitting by me; and I remember yelling at the nurses that I would rather die, just kill me. Then one nurse, who tried to make light of the situation, said “Oh sweetie we have a whole other level for patients who are thinking that way!” He was super funny and made me feel a little better.

Looking back, I think my main emotion was fear that I was going to die. I remembered always waking up to the intercoms of the hospital saying “code blue” and I was thought “Oh my God, is that me? Am I alive? Am I breathing?” It was a scary moment for both me and my family.

The biggest challenge I have overcome with since my P.E. is the fear of doctors, hospitals and needles. I was terrified of all three before my P.E. Every time I’d get sick I’d wait it out. I wouldn’t dare step near a doctor’s office. But since my P.E, everything has changed. I realized that the doctors and nurses are there to help me and keep me calm during such a difficult time. I overcame that fear and this experience has made me fall in love with the healthcare field. Now, I am trying to get into nursing school and become a nurse. I’m not scared of needles anymore, and I’m definitely not scared of doctors.  I was very lucky to be blessed with such an awesome medical team, my doctor and nurses who have helped me so much during this scary time.  I will forever be blessed this has happened to me, and I wouldn’t want it any other way. Because of this I now have my dream career and I’m stronger than ever.

Reading other survivors stories make me feel like I’m not alone with such a scary illness. It also makes me wonder why so many people have this life threatening illness and still no awareness is made. 

I would say to another survivor, to NEVER give up. It looks like a long road right now, but you will get better and back to normal! I was on blood thinners for five months. I was getting my INR checked all the time, and I was always tired and weak. But now, I’m off the blood thinners, I’m getting active again and I’m feeling more like me as time goes by. It’s not impossible and if I was able to make it through, then we all can! Awareness is key.

Connect with Sidney in the comments below or through theese links:
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  • Pinterest (PEsurvivor20) 

Thank you, Sidney, for sharing your story and message of hope with BCRN!

How Long Does it Take to Recover from a PE?

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I get asked a lot, how long does it take to recover from a PE? Most individuals that I have talked to about recovery from a pulmonary embolism want to know, how long they can expect to be healing. The short, uncomplicated answer is recovery is different for everyone. Keep that in mind. The extent of the damage to your body and other organs, underlying health issues, additional diagnosis and potential or discovered clotting disorders can all factor in to answer how long does it take to recover from a PE?

The longer, but still less complicated answer to how long does it take to recover from a PE depends on how your body heals. Contrary to common belief, blood thinners in fact do not dissolve blood clots. Only the body can dissolve a blood clot and in some cases, the blood clot does not dissolve and will not dissolve. As the blood thins (for example when on a blood thinner) and travels throughout the veins, it actually hits the clot and can eventually break away enough to flow by it in some cases. The body can also accommodate for the damaged area by creating scar tissue and rerouting blood flow through or around the clot. While a blood clot may no longer be at risk for breaking off and causing additional damage once turned to scar tissue, it is still there and is important to note when speaking of recovery. Your blood clot may never dissolve. Knowing this early on saved me a lot of worry and disbelief later in my treatment. When my DVT didn’t completely dissolve, I wasn’t left screaming or in tears wondering, “What do you mean?! No one told me that!”

I was diagnosed with a DVT in my left leg in June 2012. The clot broke free from my calf, right behind the knee, traveled through my heart and lodged into my left lung. I was in the Cardiac ICU for six days and the hospital for ten days total. It came out of nowhere and almost ended my life before I turned 30. My first conscious, non-drug induced, rational question (my very first question was ‘Can I run this Saturday?’) to my doctor after being released from the hospital was, “How long does it take to recover from a PE?” Followed quickly by “How long do I have to wear these compression stockings?”

He answered quickly to the latter “for about six months or until I tell you to stop.”

I wasn’t prepared then for the answer to my first question, how long does it take to recover from a PE? “Recovery from a PE generally takes about one to two years.”

Recovery from a PE takes one to two years.

Not to be the bearer of bad news (although I do have a pessimistic nature to be honest), I think more patients need to be told this – and more doctors need to realize it.

Length of treatment can vary from a few months to long-term over many years and is determined by factors your doctor should discuss with you. If he or she does not discuss length of treatment with you or to your satisfaction, ask for clarification until you receive a satisfactory answer!

At least 3-6 months of blood thinners are typically recommended, with a preference for long-term or often lifelong treatment in patients with unprovoked (occurs out of the blue, without any clear triggering factor such as surgery, pregnancy, injury, etc.) clots that occur in the pelvis, thigh, and/or behind knee (DVT) or a PE.

Potential Factors of a Higher Risk for Future Clots (ClotConnect.org)
  1. Gender (men have a higher risk for recurrence than women)
  2. Presence of a strong clotting disorder
  3. Obesity
  4. Significant chronic leg swelling (post thrombotic syndrome)
  5. Positive D-dimer blood test obtained while on blood thinners
  6. Positive D-dimer blood test obtained 4 weeks after having come off blood thinners
  7. A lot of left-over (residual) clot on follow-up Doppler ultrasound examination of the leg.
  8. Strong family history of unprovoked DVT or PE.
  9. In addition, patients who had a PE more likely have a PE as a recurrence and have a higher risk of dying from the recurrent clot, compared to patients who “only” had a DVT.

A PE wreaks havoc on the body at the vascular level and creates micro-damage we can’t even always see – not to mention what we can and do see. In my case, my clot traveled through my veins, right lung and heart before lodging in the lobe of my lower left lung – that creates a lot of potential for damage to arterial pathways that just take time to heal. Even 14 months out from my hospitalization, I still have days where extreme fatigue, anxiety, pain, depression and listlessness consume me to the point of interfering with normal life. I imagine this is all still a part of recovery and I may eventually have to take steps to learn to manage these feelings in my everyday life. The emotional and psychological effects of a PE are all-too real, all-too debilitating and all-too ignored.

And while it may take you upwards of a year or more to start to feeling physically normal and participate in activities again, many people, including myself, are diagnosed with blood clotting conditions (such as antiphospholipid syndrome as in my case) which require lifelong monitoring and medication to try to prevent a recurrence of blood clots. While I consider myself far into recovery after a year or more, I will always have the possibility of another clot and the lifelong treatments that come with that. For me personally, a PE was not just something I got, healed from and now I can go about my life without having to worry about it on a daily basis, although that is the case for some patients.

So in answer to how long does it take to recover from a PE? One to two years, depending on your specific situation. Be sure to discuss recovery and possible setbacks with your doctor in order to be prepared to face what can be a long and seemingly overwhelming prognosis.

Share your story. Did your doctor answer how long does it take to recover from a PE? How long have you been recovering? Does the possibility of a long recovery scare you? Was your recovery shorter or longer than 1-2 years?

There is hope for healing and you are not alone,

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How To Talk to Your Doctor about a Possible Blood Clot

Talk to Your Doctor about a Possible Blood Clot

Once in a while I get an email from acquaintances – or even strangers– describing what they fear is a symptom(s) of a blood clot in their legs. More often than not, the individual tells me they have already scheduled an appointment with their Primary Care Physician (PCP) and are waiting – and worrying – to find out what might be wrong. For many of these individuals, they have never had a blood clot before, and they want to approach their doctors with specific questions pertaining to testing and determining if in fact they do have a blood clot. And, many of these emails have concluded with, “What did you tell your doctor because I am worried he/she might not think to look for a blood clot?” I have found it is often difficult to decide how to talk to your doctor about a possible blood clot either because we don’t know what to say or are embarrassed to do so.

I always respond to these inquiries with the same information (starting with I am glad to hear you are listening to what your body is telling you) and explain that in my situation there was no time to contact a physician because by the time I realized something was wrong, I was struggling not only to walk, but breathe because the blood clot had traveled from my leg and lodged in my lung as a pulmonary embolism (PE) escalating from a manageable situation to a critical one. There was no time for preliminary discussions because I was admitted to the Intensive Care Unit (ICU) for immediate care and observation.

Still, I believe many blood clots – especially blood clots in the limbs (DVT) – are treatable before they dislodge and cause major problems to the heart, lungs or brain. If I had identified the pain in my calf as a serious and needing medical attention, I would have wondered what to ask my PCP when I was there. I would have gone in and said, “It hurts and I don’t know why,” and would still be hoping for the best possible outcome. Still, it is not always easy to say ‘It hurts’ because we often feel like we have to have something visibly or horribly wrong to see a doctor or fear being labeled a hypochondriac later – when something really might be wrong. Before my PE, I often felt like I had some sort of limit placed on the amount of times I could see a doctor with unfounded complaints before I would be hesitant to go back in.

I’ve thought a lot about what I would have said to a doctor before my situation evolved into an emergency and after doing some reading and discussing options with other survivors, I have come up with some guidelines for how to talk to your doctor about a possible blood clot. First and foremost, one should have an understanding of the symptoms of a DVT, which can be read here. It is important to note if you are experiencing symptoms of a PE, heart attack, stroke, having shortness of breath, chest pains or lost consciousness, please seek emergency medical help or call 9-1-1.

How to Talk to Your Doctor about a Possible Blood Clot
Before Your Appointment:
  • Call your PCP/Sports Physician/Specialist/etc. and request the next available appointment. It may be beneficial to say on the phone “I am concerned about symptoms A, B, C being a possible blood clot and would like the next available appointment.” If your doctor cannot work you in within the next couple of days and your symptoms do not subside or if they get worse, skip your physician’s office and head to an Urgent Care instead. You could also ask to be put on a cancellation list if you have to wait a couple of days.
  • If you have redness or swelling that is coming and going in, for example, your leg take a picture with your phone or camera to take with you in case your leg does not look the same the day of your appointment.
  • Write down symptoms you have that you are worried you may not remember on the day of your appointment.
During Your Appointment:
  • Explain your symptoms in as much detail as you can. This is where it would be helpful to pull out your picture or written note.
  • Explain why you think it may be a blood clot (especially if the doctor asks). For example, I recently had a friend say, “One of my friends had a blood clot in her lung that almost killed her and she didn’t know what it was ahead of time so I am here as a precaution.” Or you could say, “I have been reading about blood clots and a lot of my symptoms seem to fit, I would like to rule it out.” Or, “I have a history of blood clots in my family and am concerned.”
  • If you have a history of blood clots (yourself or family members), please inform your doctor. If you are taking medications that may increase your chance of blood clotting (i.e. oral contraceptives), please inform your doctor. Even if this information has previously been noted in your medical charts, be sure to remind your doctor during your exam.
If Your Doctor Does Not Agree:

I have learned that we must be an advocate for our own health and have read countless stories where someone approaches medical staff with a concern and it is dismissed as something not to worry about. If you believe you are suffering from a blood clot (DVT) and your doctor does not agree, be sure to find out why he or she does not agree. If you are uncomfortable with the explanation, you are entitled to ask for a second opinion! If you do not want to wait to seek an additional opinion, there are specific tests you can request to rule out the possibility of a blood clot. This information is also helpful to have so you can understand if your doctor is considering the possibility of a blood clot by ordering these tests.

  • Request a Doppler Ultrasound (Also called a Doppler, a scan, an ultrasound, an image). A Doppler ultrasound test uses reflected sound waves to see how blood flows through a blood vessel and is the most common method of diagnosing DVT. It helps doctors evaluate blood flow through major arteries and veins, such as those of the arms, legs, and neck. It can show blocked or reduced blood flow through narrowing in the major arteries of the neck that could cause a stroke. It also can reveal blood clots in leg veins that could break loose and block blood flow to the lungs (Web MD). This test is simple and may be scheduled at your doctor’s office or walk-in hospital lab. It should only take a few minutes to complete a Doppler and the results are available immediately. It does not hurt (unless you have pain in your limb, because they will push firmly on it to get a clear image). Do not be alarmed if your doctor orders more than once Doppler a couple of weeks a part to monitor your situation.

Although less common and sometimes unnecessary depending on your situation, you may also request or your physician may order if imaging results are unclear (test descriptions compiled from Web MD):

    • A D-Dimer Test is a blood test that measures a substance released as a blood clot breaks up. D-dimer levels are often higher than normal in people who have a blood clot. A low d-dimer test result may mean that a deep vein thrombosis or pulmonary embolism is less likely. A high d-dimer test result may not always be caused by a blood clot in the leg or lung. This is completed by a intravenous blood draw, so please note it you have a sensitivity to needles.
    • Magnetic resonance imaging (MRI) test uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body. In many cases MRI gives different information about structures in the body than can be seen with an ultrasound. MRI also may show problems that cannot be seen with other imaging methods. Using MRI to look at blood vessels and the flow of blood through them is called magnetic resonance angiography (MRA). It can find problems of the arteries and veins, such as a blocked blood vessel. Sometimes contrast material is used to see the blood vessels more clearly. This test is non-invasive, but requires you to sit or lay still for a period of time as the images are taken. Some people find this test uncomfortable if you do not like small spaces
    • A computed tomography (CT) scan uses X-rays to make detailed pictures of structures inside of the body. During the test, you will lie on a table that is attached to the CT scanner, which is a large doughnut-shaped machine. The CT scanner sends X-rays through the body area being studied. In some cases, a dye called contrast material may be used. It may be put in a vein (IV) in your arm, or you may drink it in some cases.
    • A venogram is an X-ray test that takes pictures of blood flow through the veins in a certain area of the body. During a venogram, a special dye (contrast material) is put into your veins so they can be seen clearly on an X-ray picture. A venogram looks at the condition of your veins and the valves in your veins. It shows the veins in your body and whether or not they may be blocked. This test requires some preparation ahead of time and should be discussed in detail with your doctor.
After Your Appointment:
  • Follow up with any tests your doctor has ordered. If you have been instructed to seek further testing at a walk-in lab or hospital testing facility, call right away to get the hours of operation and do not delay further testing.
  • Follow up with your doctor regarding treatment if a blood clot is discovered.
  • If you are unhappy with your diagnosis, seek an additional opinion or if your condition worsens, seek urgent medical care.

Share your story. Did you request an additional test from your doctor and if so, what was it? How was your blood clot diagnosed initially? Did you visit your doctor with any concerns? What did you say to your doctor? Have you been an advocate for yourself in diagnosing a blood clot?

There is hope for healing and you are not alone,

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Into the darkness

Read the first part of my story to get caught up.

Into the darkness cover photo 600 by 600

 

They say we are only given what we can handle in this life. But, lying alone (except for the nurse who was appointed to stand guard over me every second of the night, monitoring me for even the slightest change) in the cardiac intensive care unit after being admitted with a deep vein thrombosis (DVT) in my left calf and a pulmonary embolism (PE) that traveled through my heart and lodged in my left lung, I wasn’t convinced I could handle any of it. I had unexpectedly lost my mother just this time the year before and I was pretty sure I had quickly reached my lifetime limit of “things that can go wrong, will go wrong” as I plunged into the darkness. Turns out, I was wrong about that too – I should have known.

I missed my mom terribly, but was unable to focus on anything except the extreme pain I had felt that day and still now. In the ER, I was given morphine and then a cocktail of other pain pills, which took the edge off, but I couldn’t breathe without it hurting. I was given oxygen immediately and when I asked my guardian if I could get up to pee, he instructed I could not – in any way – move and that he would help me go to the bathroom. My choices were a catheter or a bedpan. I chose the later, he lifted me carefully, sliding the pan under me and turned his back. I waited for him to leave and he finally stepped outside of the curtain, but was back within seconds after the silence returned to the room, signaling my finish. It was dark, very dark, and I couldn’t see his face, but I asked him why he never left and he said it was his sole job to keep me company. I asked him if I would make it and he said I had good doctors to take care of me. Not exactly the answer I was looking for.

I remember being there, with him, for a few days and my family coming to see me. Everyone was speaking in hushed tones and I could barely feed myself. I wasn’t hungry anyway, though. I don’t remember seeing a doctor at all and I would later find out, my whole hospital stay was a blur of memories because of all the pain drugs I remained on.

From there, I was moved to a larger ICU room, sparsely furnished except for me – smack dab in the middle – and nothing else. It didn’t sink in until later, after conversing with a friend who faithfully visited in spite of her own fears, that the room wasn’t meant for comfort, it was meant to save my life in the even that I crashed. I get chills to this day recalling just how close to death I had come.

The hospital provided a battery of tests to diagnose my conditions – chest x-rays and imaging scans to look at my lungs and heart; Doppler imaging scans to check every organ in my body for damage; more Dopplers and scans to check my legs every other day and even an MRI to check my brain.

The DVT in my leg was severe and extended from my groin area down to my ankle. There was nearly no blood flow in my lower leg, as the veins were blocked from the clot just behind my knee. The vice feeling I had. About an eighth of my lung tissue was destroyed in the ordeal and was now dead, causing my lung to collapse. Yes, it did feel like a knife stabbing.

My thoughts – and then mostly incoherent sentences – consisted of “but I’m a runner” and “I am starting a new job on Monday so I have to go.” Neither would be happening anytime soon and one would not last through the summer, much to my devastation. I couldn’t believe this was happening, to me, nonetheless.

The medical staff, once they discovered I had been on oral contraceptives for several years, concluded that was the problem and once I stopped taking it (which I already had) all of my other problems would be solved. It wasn’t until a specialist got called in – to this day no one, not even him, recalls how – and discovered that I actually had antiphospholipid syndrome (APS), an autoimmune condition that causes the blood to clot when it shouldn’t. That specialist is now my Hematologist and I am convinced between him and my primary care physician who instructed me to go to the hospital after losing his own brother to a PE, are the reasons I am still here today. I didn’t understand what was happening and the Hematologist assured me the few times I remember speaking to him that there would be plenty of time to understand once I was no longer in such a volatile state. He told me I was very sick, lucky to be alive and not going anywhere anytime soon. I spent the better part of six days in the ICU and then another four on the cardiac care unit. At 29 years old, I was the youngest one there.

My husband, Dad, sister and three girl friends that visited kept me hanging on when I was sure I was about to lose it all. I remember being scared, lonely, irritated, angry, sad and in constant, unrelenting, at times unbearable pain. I saw bugs that weren’t there, had conversations that only I remember, others that only I don’t, and sent text messages that make no sense even to this day. I was not aloud to get up except for two days before I left the hospital and when I finally did, my legs turned to Jell-O beneath my body weight. It took one of my friends and my husband to help me shuffle to the toilet only four feet away from my bed. It took my friend holding me up while I used it and a nurse helping me wipe because I couldn’t move my arm behind me. I remember being mortified, angry, scared and in terrible pain. If this was how my life was going to be, I started to have serious second thoughts about being thankful that I was still alive.

“What happened to my life?” seemed like the understatement of the year. I couldn’t remember anything, at all. I continually asked the same questions over and over and over again. “What happened?” “Why am I here?” “Why can’t I go home?” “Did somebody call my job?” “Can I run?” “Why do I need that?” “What do I have?” “Did I die?” And, except for a select few of the ones who were convinced it was birth control and nothing else, everyone answered me again and again and again, no matter how many times I asked.

The hematologist told me very little in the hospital and looking back, I am thankful because I wouldn’t, couldn’t and didn’t understand any of it at the time – and there’s been nothing but time to start to figure it out since then.

One thing I was certain of, though, I was given a second chance at life and was determined, committed, adamant that I would not waste what I had been given. On the ride home from the hospital with my husband – toting and oxygen tank and bag of pills – I wailed about how life was meant to be lived and I was given a new lease to do so starting now. It wasn’t until weeks later that I discovered I survived something one in three people do not and that, to me, is proof that I was left to live here for a reason – and maybe part of that reason is telling all of you about what happened to me.

In healing there is hope and you are not alone,