June 3, 2015

Three Years of Recovery from a Blood Clot

Three Year Recovery Cover

Three years ago, my life changed forever in ways that I could have never of imagined before that day. I had just kicked off a new marathon training season by running about two miles with my best friend and although I was slightly discouraged (my knee hurt again and I was out of shape), I was looking forward to what was going to be a great season.

I stumbled through the weekend, my supposed-knee injury getting worse by the minute. I had no idea anything was wrong besides overdoing it on my run Saturday. I didn’t know the symptoms of DVT and PE, even though I had heard of both before. By Sunday afternoon, I couldn’t speak in full sentences, couldn’t lay flat and couldn’t walk. By late Sunday night, I was in the ICU of the hospital with an extensive DVT behind my left knee and a PE in my left lung. I was lucky to be alive as it was and nowhere near stable. I was in the worst pain I had ever experienced in my life, I was scared and I had no idea what was happening.

In the coming days, I was diagnosed with antiphospholipid syndrome, an autoimmune blood clotting condition, and eventually placed on blood thinners that were injected into my stomach. I left the hospital with an oxygen tank and a wheelchair. In the coming weeks and then months, I lost my job, many friends, what remained of my self-confidence and any hope I had that things would get better. My relationships with the people that mattered most, mainly my husband, became strained, and I hated myself and my body that had carried me through countless half marathons and physical accomplishments for what it did to me. I sank into a deep depression, uncertain of the future and uncertain that I even wanted to live if this was how the future was going to be. Physically, everything hurt and I was making slower than slow progress; mentally I was incapable of finding any hope in my situation and emotionally I was a shell of the person I had once been. In my eyes, I was unrecognizable. And, I never, ever thought things would change.

And I was wrong. I have come long way in three years of recovery and in the beginning, I thought nothing would ever change. I write this post so that you too may know there is hope for recovery and while we all must adjust to a new normal, that doesn’t mean we cannot make progress, heal, find happiness and become accustomed to the changes we have faced.

Physically

Out of the woods and into…another woods. Critical Care Becomes Longterm Care.

At three years, I consider myself physically healed, for the most part. In the beginning and for the first six months of recovery, I vividly remember being in constant pain. My leg hurt, my lung hurt and it hurt to do anything. I begged for someone to chop off my leg (I was serious) because it hurt so bad and I could not fathom any relief. I cried all the time as a result of the pain. It was the worst pain I have ever felt in my life, and I never hope to feel it again.

Physically What Has Changed: I am no longer on oxygen and I no longer need a wheelchair, either. The pain in my leg is all but gone on most days, although I feel like I deal with more overall fatigue and pain. I do not have chest pain anymore and if I did, it would concern me enough to visit the ER. My leg still swells and compression stockings are part of my everyday wear (although I have been wearing them about three days a week lately with my doctor’s knowledge). The severe purple and brown discoloration in my leg has decreased immensely, much to my surprise. I get my INR checked via blood draws every 6-8 weeks, compared to twice a week in the beginning. Day to day, I do not get fatigued as easily (for example, walking up the stairs), but I do notice when I get fatigued, it lasts longer and is harder for me to get out of, even with rest. I can sleep for 12 hours and still be exhausted. I take warfarin, aspirin, vitamin k, folic acid, synthroid and progestin-only oral contraceptives, all under advisement of my doctor. My menstrual cycles are incredibly heavy (which my doctor believes is due to my birth control and blood thinner), and I have painful side effects that pretty much keep me sidelined for the duration of my cycle, which is unpredictable in length. I’m not as sensitive to touch as I was in the beginning, and I once again enjoy physical affection and a healthy and regular sex life with my husband. The blood clot in my lung is gone and my lung function has retuned to normal – I am out of shape. I walked a slow 5K (3.1 miles) mid-May and I was able to do so comfortably, without any shortness of breathe or long recovery period. I understand more than ever the importance of movement and blood flow, and I am fortunate enough to have a standing/sitting desk at work so I move up and down throughout the day even when I can’t get away from my desk to take a walk.

Physically What Hasn’t Changed: Antiphospholipid syndrome is, at this time, a lifelong disease and it requires constant monitoring that I have worked into my regular routine. I get regular blood draws, visit my doctor about every three months and see some other doctor (endocrinologist, OBGYN, dentist, eye doctor, etc.) every month. The doctor appointments feel more normal as I have entered a non-critical state of my care and do not require constant monitoring. I’m still not back to running (or exercising) regularly, but I have my sites set on training for a half marathon next spring (did I just say that?!). I have leg swelling from time to time, especially at the end of the day; my left (DVT) leg is slightly larger than my right leg and my clot has calcified behind my left knee.

IMG_6099

Lifestyle

Don’t sweat the small stuff…because it is really the big stuff!

Three years ago I lost my new job as a 9-1-1 Dispatcher three months after my PE, and I was completely devastated. I had worked for two long years to get the job, during which time I lost my Mom, my biggest supporter, and I was certain starting a new career was the start of a new life for me. I knew Mom would be proud of me, and I was proud of me too, for the first time in a long time. While I tried my hardest, I just could not learn a new job (especially an intense and stressful one) while also recovering from a PE. I had setback after setback in my recovery, including pleurisy and extreme anxiety, which greatly impaired my decision-making and rationing skills. The medications I was on greatly impacted my ability to sleep, concentrate and remember things. In the end, it just didn’t work out. And, I sank into the worst depression I have ever encountered in my life. I could not see a way out, there was none.

What Has Changed in My Lifestyle: I now have a full-time job back in the non-profit field doing work I succeed at. I never thought that would happen again. It took me 16 months to find full-time employment and the experience of being unemployed and kicked down at every turn was really damaging. Financial instability was the worst. I am working through the damage done to my self-esteem and self-confidence very slowly. It is hard for me to trust not only myself, but also people I do not already know. I am healing, though. I no longer run half marathons or lift weights or visit the gym. I just can’t get back into running since my PE. I prefer to be outside more and choose to take a walk or sit on the porch rather than go to a movie. Nature is more meaningful to me now, and I appreciate things like the park, sunsets, the ocean and the woods more. I crave being near natural things. I dress up – a lot more. Wearing colorful clothing is important to me.

What Hasn’t Changed in My Lifestyle: My diet hasn’t changed tremendously. While total elimination has not worked for me, I try to limit the amount of grains, dairy and sugar I eat. I prefer to eat as close to paleo as I can, but do not follow it exclusively. I still eat regular amounts of vitamin k rich vegetables, I eat cranberries and I drink alcohol in moderation.

IMG_6072

Psychologically and Emotionally

Just because it’s hardly talked about, doesn’t mean it doesn’t exist. The psychological trauma of DVT and PE is real. 

The psychological and emotional impact of a DVT and PE and recovery from these events is the one thing I am not fully prepared to talk about. I am still working through this aspect of recovery, and it still has a strong influence over my life. Talking about it helps. Connecting with others helps. And, because of those things, I will do my best to convey my struggles and progress with you.

What Has Changed Psychologically and Emotionally: Where to begin? It seems like everything has changed for me on this front. I believe that because I am still processing what happened to me, I suffer from a high level of anxiety and fear on a regular basis. I am very quick to get angry and very quick to shut down in the face of personal adversity. My hypervigilance about suffering from another clot has decreased in regards to myself, but I am convinced that everyone around me who has a leg pain or trouble breathing has a DVT or PE, and I recommend they all go to the ER. There is no “could be” for me, it “is” a blood clot. I’ve identified some pretty specific triggers that either make me angry, confrontational or sad and they include, “That’s a bummer,” “This thing/time/place/etc. is different,” and “It’s not that bad.” Because it’s not a bummer (it’s so much more than that), this is no different and it really is that bad in my experience, at least. I have discovered that I need support in being a source of hope, inspiration and information for so many other survivors, and I have discovered that I need to readily seek out that support. For as much anxiety as I have, some things just do not matter anymore. If you don’t like me, I’m okay with that. I have more consequential things to worry about now. I have developed an irrational fear of heights. I am fully aware I could (and I might) die at any second, but I continue living my life.

What Hasn’t Changed Psychologically and Emotionally: I continue to overcome difficult things in my life and persevere through tough times, but I do not embrace positivity, and I do not believe a positive outlook is the key to healing. I am realistic, honest and straightforward and with that, I move forward, but I am not necessarily a positive person all the time.

Recovery is a process. One with a clearly defined beginning and end named then and now. Then being my life before my PE and now being my life since then. There is no middle ground. Time is crucial and matters greatly to me. There is no time to waste. Recovery is difficult, painful, lonely and confusing, but there is hope. Hope that we do not remain the same and as we heal, no matter how little, we progress through the process of time.

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

Filed Under: Educate, Empower, Encourage, Enrich Tagged With: , , , , , , , , , 53 Comments
May 13, 2015

Surviving Two DVT & PE Episodes by Victor Zarate

Vic Survivor Speaks Post Graphic

The first one was in July 2011 after a long car ride from Colorado to Florida.  I drove without circulating and developed a DVT in my right calf.  It was sore for about two weeks (I never go to the doctor), I had no clue what was going on. One night soon after, while going to bed, I hurt my back.  What I didn’t know was that what actually happened is that the clot in my leg moved to my lungs.

I waited a couple of days and one day at work I just didn’t feel right.  So, I called my wife and said that I was going to go to urgent care to get myself checked out.  I went there and everything checked out okay.  The doctor said just in case I should go and get an ultrasound done on my calf the next day.  So, I made the appointment for the following day.  At the appointment the technician said that she couldn’t tell me if I had a clot or not and said that she would just go get the doctor if she found one.  It turned out that I had a clot the full length of my calf.  The doctor said that I should go to the ER right away.  I went there and the doctors begin to give me Lovenox and a Heparin drip via IV.

As the ER doc was leaving my room she said, “By any chance do you have any chest or back pain?”  I said come to think of it, I do have some back pain.  She said let’s take a CT scan just in case.  By the way….I’ve come to hate CT scans with contrast with a passion.  Soon after the CT scan a bunch of people, nurses and doctors came into my room with a sense of urgency.  I was diagnosed with multiple bi-lateral pulmonary embolisms.

unnamed

I had no clue what that was and just tried to enjoy my time in the hospital since I was going to be there for awhile.  According to the doctors I had a very serious condition and I was a very atypical PE patient since my O2 sats remained at 99 the entire time.  I stayed three days in the hospital and took two weeks off of work.  I went back to normal life, except the Coumadin therapy of course.  In fact I went back to exercising.  I ran in a few 5K races and even in October 2011 went for a 26 mile hike on the AT while still on Coumadin.  I had no clue how serious that could have been if I were to have an accident.  After six months of Coumadin the doctor said I should be fine to get off the Coumadin and then  have some blood drawn to test for blood clotting disorders.  All the results came back negative.  Great news!  No more Coumadin.

The second one was much different.  It happened in January 2014.  I again had a sore calf.  This time it was the left side.  I had been exercising and I just thought that I had a sore calf from straining it.  I noticed that I was a little out of breath going up hills and stairs.  So, I decided that I was going to get in better shape.  I was so out of breath that it was hard just to walk home from work up a relatively small hill.  I went to work one day and I noticed that I was having a hard time breathing.  So much so that I couldn’t even finish a complete sentence without having to take a breath.  I knew something was wrong but I didn’t know what.  So, off to the ER again.  I walked into the ER everything was looking good, O2 saturation was good while resting, heart rate perfect and blood pressure a little high.  The doctor said that I might just be having some anxiety but that since I had DVT/PE history they would do a CT scan.  Long story short I was diagnosed with a very large saddle PE with multiple bi-lateral PE and a DVT that was the whole length of my right leg.  This time I was in trouble big time even though I was feeling well.  I had to be flown flight for life to the hospital.  Upon arrival to the hospital, I was informed that I needed to have open heart surgery immediately.

After being there for a couple of hours the doctors came back to me and said that since I was very stable that they should wait to do the surgery until the morning.  Morning came and so did the doctors.  A lot of them.  They all were coming to see the “walking dead”.  I should’ve died they all said.  So, they scheduled the surgery.  I signed all the paper work.  Called my mom and my children, my wonderful wife was by my side, and said prayers.  Soon the doctors came back and they decided that I was a good candidate for interventional radiology.  They said it would be risky but that I was a good candidate because I was so stable.  Praise God the angiogram worked!  The catheters that they put in my heart and lungs broke up and dissolved the clots and after another CT scan, did I mention I hate those, I was all clear.  The saddle PE was nearly gone along with most of the PEs in my lungs.  I spent 10 days in the hospital.  Several weeks in a bed recovering because I was so exhausted from just a walk to the car.

This one hit me like a ton of bricks.  I had none of these problems with my first DVT/PE.  None!  I experienced exhaustion, anxiety, depression and fear.  I couldn’t even talk about or watch something exciting without getting exhausted and anxious.  I did not expect this.  It changed my life.  To this day I still have problems with all the above mentioned conditions.  Thank God not all of them at once.  I will be on blood thinners for life.  However, I will say that I am getting better.  Just the other day I exercised with my son.  I walked a half a mile, did some jump roping, squats and lunges.  However, I did very few of all those activities and it wiped me out.  I thought I was going to have a heart attack.

I write all this to say that you can experience all different types of complications from DVT/PE.  I will say that you have to keep fighting.  Don’t give up.  That fact that you survive these awful problems means that God has some plans for you still.  Listen to your doctors.  Don’t be ashamed of taking medicine to get through the PTSD.  It is God’s grace that we have these medicines to help us.  I hope my story helps someone out there and that we all can have hope that things do get better over time.  It’s the waiting part that is hard but we have to be patient.  I’m speaking to myself as well.

God bless and I hope you all have quick and easy recoveries.

Thank you, Vic, for sharing your story! You can connect with Vic on Facebook. 

vic share your story

 

Filed Under: Patient Stories Tagged With: , , , , , , , , , , , 5 Comments
October 29, 2014

You Survived a Blood Clot…Now What?

 

When I suffered from a DVT and PE in May 2012, it was completely unexpected and unlike anything I had ever experienced before. I had never been ill, never been to the hospital, or had surgery. I was not prepared for the physical pain and long process of recovery. I was especially not prepared for the emotional and psychological burden of such a traumatic event. Every aspect of my life was changed as a result of surviving a blood clot. But, now that I survived a blood clot, what was next? Here is what I have discovered during the recovery process that is important for recovering, healing and ultimately moving on with the gift of life we, as survivors, have been given.

Do not let anyone tell you what you should or shouldn’t do.

The words should and should not have become a detrimental necessity of the English language so it seems. It’s toxic, it’s invasive and it seems we all do or say it to some extent. I know I am guilty of often thinking “I shouldn’t feel this way,” “You should find out about,” or “I should have.” What’s the big deal with should, you ask? It’s a one-way fast-track guilt-trip seeded in self-doubt, to say the least. By dwelling on our shortcomings and failures (which is what we do when we say should), we tend to not look for solutions or take the necessary steps for action to improve our situation.  Do not let anyone, including yourself, tell you what you should or should not be doing when it comes to your health. If you wish you would have  done something differently (for example, ask more questions from your doctor in the beginning), you may say “Next time I will” or “In the future, I plan to” or “At my next appointment I will ask what this means for my overall health.” Take steps that help you to ultimately feel better about yourself and your health. And when it comes to someone else and his or her treatment – you are not them and he or she is not you. We may face common issues or diagnoses’, but at the end of the day, only you and your medical team can decide what is right for you.

Find a medical team.

While I do believe that one doctor can make a difference – even save a life – I also believe it is important to have a medical team to treat you after surviving a blood clot. And, in reality, you probably already have a team forming. Treating a blood clot is not simple by any means and while your hematologist or general practitioner or vascular surgeon may be your main point of contact for follow-up care, keep a team of professionals at your disposal. This way, when something comes up (or goes wrong) you have a team of varied specialties and therefore hopefully talents) at your fingertips already.

Here is what my medical team currently looks like as an example. I have a hematologist who handled my case in the hospital. He is my primary contact for managing my blood, antiphospholipid syndrome, warfarin management, and anything new that may pertain to my blood or ongoing condition. For everyday problems (or what I think are everyday problems (like a sore throat), I start by seeing my Primary Care Physician who is a DO. I regularly visit the outpatient lab at the hospital to have my blood drawn to check my INR levels. I also have a rheumatologist to handle any current or new autoimmune concerns (at the direction of my hematologist) and I have an endocrinologist to monitor what has been a lifelong thyroid condition. I also have a pharmacy that I use consistently and am comfortable asking the pharmacists questions about over-the-counter or prescription interactions. Even though I do not see all of these specialists all of the time, they are there if I need them or have a concern. I have built a team I am confident relying on if I need something or have a concern.

Find and build a team of doctors you trust your health to. For a list of common specialists seen after a blood clotting incident, visit here.

Gather your resources.

Just like building a medical team is important, it is also important to have a pool of resources to help you through the recovery process. This could include things like books, websites, personal contacts, and in-person or online support groups; not to mention things like assistance with food, housing, insurance, prescriptions, and medical expenses. What people often do not understand is that the effects of a blood clot are devastating and often far-reaching.

When I suffered from a blood clot in 2012, I was not prepared for the fallout. I lost my job, my insurance, my income – everything – and I was not prepared for the financial, emotional, physical, and emotional fallout. I already didn’t feel good and on top of it all – I lost it all. That is not something one can easily rebound from. I began gathering my resources from the beginning. I inquired about financial aid at the hospital (you would be surprised most people qualify for something), searched for prescription assistance programs, asked for help in searching for jobs, let my family help when they were able, cut the cable and phone bill, etc. Anything that I thought would make a difference in my situation and relieve the pressure of trying to live with a debilitating injury/illness, I did. Resources exist and yes, many are hard to obtain, but there are some out there. If you can’t buy food, visit a local food pantry or church. If you need help keeping a roof over your head, search for a housing assistance program in your area. If you can’t afford your medication, ask your doctor’s office if they have a social worker available to help you navigate the hurdles. This is not to say any of this is easy, but it is at least worth gathering what resources you can when you can.

Build a support network.

I will be the first to tell you, people generally do not understand first, what a blood clot is, and second, what recovery is like. It is important to start building a support network early on. Searching for my own support during my recovery is how Blood Clot Recovery Network began. It is crucial that you reach out to other people who can relate to what you have been through – because they have been through it too. But, even if you are not comfortable reaching out to people you do not know, build a support network of people who care about you be it family, friends, fellow survivors, and an online support group. You can join BCRN’s private Facebook group. Having at least one other person to support you unconditionally in your recovery is important. If you don’t have that person in your life, please find support here, at BCRN.

Recognize your recovery is expansive. And listen to your body.

Recovery does not happen overnight – or sometimes even days, weeks, or months after a PE and/or DVT. Physical recovery from a blood clot takes weeks, months, or sometimes even longer. Physical and psychological complications can be long-lasting and far-reaching. At the beginning of my recovery, I wanted to “get better” right away, and it was hard for me to understand why I didn’t feel better in a week or two – or even a month or six months or a year down the line. Recovery takes time. And your body is very good at telling you exactly what it needs – or does not need. Throughout your recovery, listen to your body. If you try to go back to work, walk around the block or go back to the gym and you are struggling with fatigue, more complications, or pain – your body is probably telling you to rest. A DVT and especially a PE causes micro-damage, sometimes to organs like the heart or lungs,  that the body has to heal. Healing takes a tremendous amount of resources and energy from the body.

Put yourself first.

For the first time in maybe my whole life, I had to learn to put myself first during my recovery – and that was not easy to do. I had to say no to things like meeting up with friends for dinner, a phone call to catch up, cooking, cleaning the house, and running errands. I had to say no to things that made me unhappy or uncomfortable – including people who did not support me during my recovery. It was very hard to put myself first, but it was a necessity. You have to come first during your recovery. Learn to say no and if you have things that need to get done in a given time period, ask your support network for assistance or advice. As you begin to heal, you can start to do things that you used to do or take on more tasks, but in the beginning, don’t be afraid to say no, or yes, and focus on yourself.

Work on finding your new normal.

Everything changed after I survived a blood clot and finding my new normal is an adjustment I am still working on to this day. Even more so than adjusting to what is the new normal, though, is recognizing that things can no longer be the same as they were – because I am not the same person coming out of this survival as I was going in. I have faced more pain, fear, uncertainty, and failure than I ever thought possible. I have survived something many people do not. I have to live with the burden of a lifelong and complicated illness that I am still unsure of what the outcome will be. Do I have to give up the life I loved and the things that made me happy? No, I do not believe I or anyone does, but I do have a new perspective on life that is different than the one I had before. I have different limits, different expectations, different fears, and a new appreciation for the life I have now. A blood clot changes everything. Give yourself the time and patience you deserve to adjust to that fact.

Never, ever, ever give up.

There is hope for recovery. Just over two years out from my blood clot, I consider myself physically recovered although I still face complications from time to time and will always have to manage my medication and risks that come with that. I still face the emotional burden of what happened to me, but I am working on it little by little. I wanted to give up so many times during my recovery, but somehow, I always managed to hope for a better tomorrow. I am passing that hope on to you. You can recover. You can make improvements. You can find support and love. Find something you are passionate about and keep your sights on a goal. For me, if I can help one other person going through the struggle of recovery, I know my own struggle was worth it. Find what makes you happy, what drives you – your children, your family, your career, your pets, your love of music or art, your creativity, your friends – anything – and hang on to the hope that in that happiness, you will succeed.

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

Filed Under: Empower Tagged With: , , , , , , , , , , 71 Comments
May 28, 2014

7 Steps to Feel Better about Yourself

It seems like I have struggled with self-esteem in one way or another throughout my entire life. I can remember it started fairly early, as a young lady in middle and high school, comparing myself to other girls. I was too fat (and still am), my hair was too thin (and still is) and I didn’t fit in with the cool kids (and still wouldn’t). In college, I isolated myself in my studies and a few select relationships (the cool kids still weren’t that into me) and as a young adult, I found myself drawing a comparison in what I now know to be an all-too competitive job market. I continued to doubt my appearance (I needed to lose weight and wear my hair down) and found comfort in friends that weren’t the norm (I realized there was no such thing as a cool kid, anyway). I realized health was more important than appearance and running, for the first time since well, ever, gave my self-confidence a much needed boost. I treasured my family (of the two- and four-legged variety) and realized it didn’t matter so much what others thought about me as long as I was loved by them. I was getting somewhere – I started a career where I worked hard to be among the best in the field and, I even liked myself again.

I liked myself for about two and a half days when a blood clot in my lung (PE) not only almost killed me, but drastically changed how I thought about myself once again. I went from healthy, active and content with my life to gravely unhealthy, unable to walk unassisted and living in a state of constant turmoil. Relationships suffered, I lost my job and any faith I had in myself to be a valuable human being. I couldn’t run, I couldn’t sleep, and I couldn’t function. Not working, I felt like I was not contributing to society and surely found what I could do was eat – the pounds piled back on and the warfarin pretty much killed any liking I had for my already way-too thin hair. I know I should count my lucky stars (okay, star) that my hair is still there, but the changes I saw in its color and texture – along with a severely discolored leg that will never see the light of day again – made it nearly impossible to find even one thing physically appealing about myself. I was a blob, barely existent and unable to see my way out of the darkness. My emotions were bruised – anxiety, fear and depression set in – and the energy needed to be happy were not worth the energy I did not have. I was sick, I was tired and I hated myself.

I found that the blow to my self-esteem was different than being fat in high school or at the bottom of the class curve – this blow was far below anything I had ever experienced in my whole life and one I hope to not experience again. It was devastating, it was overwhelming and it was deep. It is pain unlike any other –even the physical pain that comes with a PE. There is nothing anyone can say or do to help or make you feel better. When you are met with one obstacle after another, it’s easier to give up than to fight and there were times when give up was exactly what I did. It hurt too much, I was too tired and to me, it didn’t matter anyway. I think you reach a point when you just can’t take anymore – then more comes your way. Grief sets in and consumes you. You can’t see a way out, and for some time, there is no way out. I spent a great deal of time (the better part of a year) wholeheartedly believing my life would never, ever get any better than the moment I was in right then and there – consumed by pain, grief, sadness and anger.

It was not easy to get out of the darkness I was enveloped in and believe me, I still spend frequent periods there, but I can see a light. I know there is hope because I am a survivor. I am here for a reason – whether it is to raise awareness about blood clots, to help others, to spend time with the ones I love or something more adventurous like travel the world and bring awareness to those less fortunate than myself – I am here for a reason.

So, how is it that things started to turn around for me? Gaining back your self-esteem is not something I believe someone else can tell you how to do. It’s personal and it’s different for everyone. Although we share common threads of recovery, fear and sadness – our stories are inherently different because we as human beings are different.

What I do know is that reading stories about others, who had made it through similar challenges stemming from life-threatening or chronic illness, helped me to realize that there is hope for me to do the same. It started with a good day here and there – a sunny day that I was able to enjoy, a kind word from a friend, a good hair day or a job interview. Slowly, very slowly, I began to recognize pieces of the old me and of my old self-worth. When I found them, I nurtured them and sought out others to do the same. Maybe it came in the form of writing an article about blood clot awareness, providing support for someone still in the hospital or taking a walk in the park (that didn’t end in tears). As I started to allow myself to feel appreciated and valued, others did the same and from there, I have begun to build back my self-esteem.

It has been a scrupulously slow and painful process. And, almost as important as getting out of that horrible place lacking self-worth, self-care and self-love, is what you do with it once you start to break free. I have found that nurturing my self-esteem has been very important. Even if it is one small step at a time that I focus on, it helps me feel better about myself.

There are some simple steps you can take to feel better about yourself. They don’t have to be monumental (yes, they may look that way now) and they don’t have to happen right now. If you are ready, give them a try. If you are not, start thinking about them and when the day comes that begin to recognize how important you are, you have a plan for nurturing that significance.

7 Steps to Feel Better about Yourself

First, let me give you a peek into my steps:

I wanted purple hair. And I got purple hair. I have never done anything drastic with my hair. Purple hair was a huge change for me. As not quite the societal norm, it was a huge risk for me (I play by the rules). I saved up a little bit of money (once I had some coming in again). I didn’t ask anyone’s opinion first (okay, I texted my sister from the salon, but lucky for me she didn’t respond in time and I went through with it) and I went to the salon by myself. An afternoon just for me. I had a blast with the ladies there and left with a gigantic smile on my face. It was different, it was daring, it was the perfect boost I needed to like myself just a little bit more.

  • Step 1: Make a change. It doesn’t have to be big for the rest of us, but it has to be big for you. It has to matter to you. It can be as big or as small as you want it to be. [Ideas: Get your hair or nails done; buy a new outfit; make a new friend; start a new exercise program; redecorate that space you’ve been meaning to; consider a career change; learn a new skill; start a new hobby]
  • Step 2: Take a risk. Do something you wouldn’t normally do. As my best friend likes to say “Go big, or go home.” Do something exciting for you. [Ideas: Cut or color your hair drastically; travel to a new place; eat a new food; pursue your passion; do something you wouldn’t normally do]
  • Step 3: Do something entirely for yourself. No ifs, and or buts about it. Do what you would like to do. Only for you. Don’t worry about what others will think (just this once). Enjoy yourself.
  • Step 4: Create a cash fund to do it with. Chances are, your steps might cost a little money (although you can make it as inexpensive or expensive as you would like). You don’t have to spend a lot of money, though. I know how hard it is to come by extra cash when you are paying medical bills and worrying about income. Save a few dollars at a time, skip lunch out or take $5 out of your paycheck each week to save up for something special. Or, plan your steps at no cost.
  • Step 5: Take small steps. If you don’t have the money for steps right now, plan something that doesn’t cost anything (think rearranging the furniture in your bedroom, writing that poem you always dreamed you would or learning to use Facebook) until you can save up for something that does.
  • Step 6: Tell the world. You did it! Sharing (maybe even in the form of a picture, hard, I know, believe me) really makes you feel accomplished and excited about the steps you have taken. Your world can be big (the internet) or your most intimate family, but tell someone.
  • Step 7: Repeat. One through seven. You’ve got them now!

You can do this. I know you can. Has the purple faded from my hair? A little. But, the boost my self-confidence got from the experience was worth it’s weight in gold. I’m already saving to go back!

Share your story. Are you struggling with your self-esteem more since your DVT or PE? Does it seem hopeless? Have you taken any of these steps to help yourself feel better? Tell me about it in the comments or commit to take a step today!

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

 

Filed Under: Empower Tagged With: , , , , , , 25 Comments
May 7, 2014

A Survivor Speaks: Fighting Factor Five By Jennifer Murnin

Jennifer M Cover (MAY)

In 2008, at the age of 18, I got my first blood clot.  During a weekend away, I began having pain in my right hip which lasted the entire weekend and gradually became stronger.  I tried to ignore the pain until I woke up Monday morning with swelling in my entire leg.  I had no idea where the pain was coming from so I called off work and made my mom take me to the emergency room.  While waiting to see a doctor, my entire leg and foot began to turn purple and swell even more.  Nurses did X-rays on my hips and found nothing wrong.  Eventually, a doctor came to see me and told me I had Bursitis (swelling in my joints).  My mom got me an anti-inflammatory and we went home feeling satisfied that we found out what was wrong.

Later that night my uncle called to talk to my dad about the plumbing in his house.  Fortunately, my family doctor is also my uncle, and because I was not feeling any better, my mom asked my dad to tell my uncle what had happened that day at the hospital.  Without hesitation, my uncle asked my dad to squeeze my calf and bend my toes.  He couldn’t.  The swelling was too severe.  After hearing that and without even seeing my leg, my uncle told my dad that I had a blood clot and needed to get back to the hospital immediately.   Feeling nervous, I asked both of my parents what a blood clot was and they responded, “not good”.  My dad told me to pack an overnight bag which confused me even more and brought on feelings of fear and helplessness.  I did not know how much more severe all of this was going to become.

As soon as I got to the emergency room, I was taken right back to a room where an ultrasound technician was waiting for me.  She asked me if I was taking birth control and I told her I was.  She immediately asked, “Do you take YAZ?”  Again, I responded, “yes” and she told me that day would be the last day I would take it.

As she began to do the ultrasound, she told me it wasn’t a question of if I had a blood clot, but how big it was.  At10:15pm, I was told my blood clot started in my toes and extended all the way to my hip.

I was admitted to the hospital and stayed the night with my mom by my side.  The next morning, around 8:30am, my blood clot was re-evaluated.  It was determined that the clot continued to get larger, and now extended to my belly button.  The doctors’ main concern was because the vein the blood clot was in is a vein that travels to my heart. Because of this concern, an implanted filter could be used to ensure the blood clot did not break off and travel; but it would not get rid of the clot so the filter would not benefit me.

By the afternoon, my uncle decided he would try a treatment that would hopefully dissolve the blood clot; a treatment that he had never tried before.

I think it was at this point when I began to panic because the reality sank in.  I suddenly became aware of how severe and scary this all was becoming.

The next morning I went in for a short procedure to insert three tubes in the back of my leg.  These tubes would pump a heavy-duty anticoagulant through my clotted veins.  Because of the strength of the anticoagulant and the potential life-threatening complications, I began my stay in the ICU.  The doctors told me the tubes could be in my leg anywhere from a couple of hours to a day at most.  While the tubes were placed, I could not sit up.  I could not bend my leg.  I could not really move at all for fear of moving the tubes and causing more pain and damage. Each morning I was taken back down to a short procedure room and had dye shot through my veins to determine if the treatment was working.  One day turned into two, two into three, and finally after five long, fear-filled days, the clot began to partially dissolve.  The remaining settled in between my calf and my toes.  I spent another two days as an admitted patient, scared that the blood clot would get larger and eventually travel to my heart.  As a young college student, eighteen years old, I never imagined I would be scared of dying.

After two more days, I was released with a diagnosis of Factor V Genetic Mutation or Factor V Leiden with DVT (Deep Vein Thrombosis). I went home on the condition that a home health nurse would come to my house every day to draw blood and administer Lovanox (blood thinner) shots in my stomach.  I had to wear a compression stocking that is tight on my leg to help improve the circulation of blood.

Finally after eight terrifying days, I was able to leave and return home.

As I made my way out of the hospital, I realized that I had to relearn how to bend my leg and even walk again.  After eight days, I left a new person – feeling damaged, hurt, angry, and broken.

After weeks filled with many specialist and doctor appointments, I was faced with the reality that my entire life was different.  I was put on a lifelong treatment of Coumadin (an oral blood thinner).  This changed the amount of vitamin k I could intake, the types of medicine I would be able to have, and began to thin my blood so much that a mere paper cut would bleed for five minutes and a small bruise would last for weeks.

I began my sophomore semester of college in the fall, and had to watch how long I was sitting in class.  I had to walk around campus with a bright white compression stocking on.  At the time, I hated that I had to wear it because everyone would stare.  I became angry that my entire life had to change because of a blood clot.  I spent a year or two battling with feelings of self-doubt, pity, disappointment, and resentment. I was dealing with so much while other college students were busy deciding what they were going to do with their Friday night.

It took a lot of time, support, and healing to come to terms with my new life.  I got there eventually.

Fast forward six years and I have now recently made a huge decision that will affect me and my future children and family.

From the day I was diagnosed with Factor V, many doctors and specialists assured me that my children were guaranteed to have the same genetic mutation.  I could not imagine wanting that life for my child or any child.  I did not want my children to wear a stocking.  I did not want them to be forced to get blood drawn every 3 – 4 weeks.  I did not want them to have to be scared of throwing a blood clot every day of their lives.

Because of the many risks associated with pregnancy and childbirth (for me as well as my children) I wanted to avoid the chance of pregnancy and any of the risks associated with it.  After years of contemplating and dealing with the conflicting positive and negative feelings towards the situation, I met an amazing doctor who helped me feel confident and brave enough to make the right decision for me.  I decided to get my tubes tied.  I scheduled appointments with genetic counselors and specialists who provided me with every piece of information they could to help ensure I was making the right decision.  In the end, the support of my family and friends helped me make the best decision I could for myself and my future children.  I followed through on the surgery just three days ago.

I had the tubal on March 21, 2014 and unfortunately threw another small clot in my calf.  When I found the blood clot, I instantly filled up with feelings of fear and hurt.  I was angry that this decision I painfully made was only going to cause more pain and suffering.  I will forever live with this diagnosis and I now had to suffer the consequences of my decision.

The first time I had a blood clot, I was unsure of what was going to happen. Now that I knew what could happen, I was terrified.  Once again, my life could be changed, or even cut short before I had the chance to experience a lot of things that life might have in store for me in the future.

Thankfully my uncle came to my rescue again and saw me as soon as he could.  He assured me that this time the clot was not as concerning.  Since we know how my body reacts, we can solve this problem.  I will now spend the next week receiving Lovanox shots in my stomach twice a day as well as taking Coumadin to help thin my blood and dissolve the clot.

There are many times I return to the “life isn’t fair” feeling, but at the end of the day I am thankful for the amount of support I receive from my family and friends.  I can ignore the stocking I wear every day.  I can deal with the pills I take every night.  I can cope with getting blood work done every couple weeks.  I can survive and thrive knowing that the consequences could be so much worse.  The blood clot and damaged veins are painful and ache each and every day – but at the end of the day I am here, wearing my stocking, and thankful for the life I was given.

Jennifer and her friend, Katie Martin, are doing everything they can to help raise awareness about blood clots and make a difference in the lives of others facing this often devastating diagnosis, including walking on the Stop the Clot team in NYC on June 7, 2014.

jennkatie3

Jennifer and Katie have a fundraising page to raise money for the National Blood Clot Alliance. Please check it out, share and donate if you are able: www.grouprev.com/factorvfighters. Good luck Jennifer and Katie, we will be cheering for you.

 

Filed Under: Patient Stories Tagged With: , , , , , , , , , , , , 7 Comments
March 12, 2014

A Survivor Speaks: Un-Exploded Me by Patty

I recently celebrated my three month anniversary of surviving PE with a simple Facebook post about this “accomplishment.”  Not sure why I chose this word – getting to this point doesn’t seem like much of a triumph or an achievement.  It just is.  Just shy of this milestone, I was starting to feel my old self again. No pressure on my chest or need to inhale deeply. Now, just several days beyond this three month mark, those sensations are back again.

This is not my first “dance with death” – I was diagnosed with a DVT in 2008.  Back then, the greatest struggle was learning to cope with self-injecting Lovanox during my recovery and, any time later when I flew on an airplane for more than three hours.  Other than that, it was a simple baby aspirin daily and a “note to self” not to sit for long periods of time. Oh yeah, how could I forget – those lovely thrombosis socks.  Even my diagnosis of C-protein deficiency didn’t alarm me in any way.

PE changes EVERYTHING.  On September 22, 2013, after running to catch my commuter train home, I sat down, caught my breath and experienced a sudden shooting headache.  As the ride ended my headache dissipated. However, when I stood up, I suddenly felt terrible shooting pain across my chest and in my back and jaw.  As I had worked for the American Heart Association for a brief time, I was convinced I was having a heart attack.  My sister, a current AHA employee, picked me up at the station. We had planned to go shopping in advance of her move into our new two-family house taking place the next day.  I told her I didn’t feel well and explained my symptoms.  She insisted upon taking me to the hospital (she actually wanted to call 9-1-1- but I wouldn’t’ let her).  Ironically, as we approached the hospital my pain had completely disappeared.

After a thorough exam by a nurse practitioner, I was given a D-Dimer test.  The test had come back positive, but the nurse believed it could be associated with my old DVT.  To be certain, I was sent for a CT Scan.   At this point, I was completely positive.  I never associated the recent episodes of panic attack, shortness of breath or the feeling of weight on my chest with anything other than my recent weight gain.  As I awaited the result of the CT Scan I fully expected to be going home that evening.  I couldn’t be more wrong.  I’ll never forget the look on the nurse’s face when she delivered the news – multiple bi-lateral pulmonary emboli.

And then it happened.  I was immediately rolled out of the ER holding area tears running down my face in complete disbelief, hooked up to every kind of monitor possible and set directly across from the nursing station.  By Midnight I was in the ICU where I would stay for a full week.

On the eve of undergoing a relatively new procedure for treating sub-massive PEs – Catheter-directed Thrombolysis (a procedure worthy of its own blog) – I received what is known in my faith-tradition as “anointing of the sick” – also referred to as “Last Rights.”   Despite the finality of this beautiful blessing ceremony, I don’t think I fully grasped the severity of my situation.  In total, I spent 15 days in the hospital.

Upon my return home, I wanted to jump back into life and quickly realized I couldn’t.  Just one week following my return to work (two weeks home from the hospital), I contracted a severe virus and was hospitalized again.  One more ER visit followed as my anxiety hit an all-time high and breathing was difficult.

Since that time, I’ve learned my lesson; each day is a new challenge because each day is not the same as the previous.  One day, you are fine; the next, exhausted.   Thanks to PE, our family Thanksgiving tradition was turned on its head (I always cook – this year we ate out).  And, I sat out Christmas Eve.

While there are so many aspects to this recovery that frustrate me, I think I get most annoyed by people who feel it necessary to remark about how “good” I look.  Granted, I suppose I do look good for someone who almost died.  Unfortunately, this outward appearance belies the fact that I live with a severe illness from which you can never quite heal.

I’m at the stage right now where I ebb and flow among the five stages of grief and PTSD.  I realize now that most who suffer from blood clots or clotting disorders are like human time bombs waiting to explode.  I’m one of the lucky ones – “disarmed” so to speak – before causing any significant damage to myself or my family.

I hope this luck continues to go my way.  Until then, I will keep hoping, praying and fighting for a cure so that my oldest son and sister (both C-protein deficient), never have to experience what I did.

Patty is pictured above (left) with her sister, her guardian angel, at her side. Be sure to connect with Patty in the comments below. 

Thank you, Patty, for sharing your story with BCRN.

Filed Under: Patient Stories Tagged With: , , , , , 4 Comments
Next Page »