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 are a few things I have discovered during the recovery process that are 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 shoulding, you ask? (Yes, I made up a word, just now). 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.” Not shoulding yourself will allow you to 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 your 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 there 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 the 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/or an online support group. You can join BCRN’s private Facebook group, or find more online support resources here. 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 take anytime up to two years (or more or less, depending on the individual) and sometimes the emotional recovery from a blood clot can taken even longer. Physical and psychological complications can be long lasting and far-reaching. In 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,

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Your Ongoing Care Specialist Guide

Facing recovery from a DVT and PE can be overwhelming, scary and very uncertain, to say the least. Which doctor should you see for what and when? There are so many options available and diagnosis, treatment and procedures vary greatly from one person to the other. Here is your Ongoing Care Specialist Guide from BCRN.

Primary Care Physician/Provider (PCP)

  • Role: The primary care physician is also your family doctor or main point of contact for most undiagnosed health concerns. He or she is the place where you often begin either to diagnose a problem or return for ongoing care. The care of a PCP is not limited by cause, organ system or diagnosis and may also refer you to a specialist. A PCP may be an MD (Medical Doctor), DO (Doctor of Medicine) or NP (Nurse Practitioner)
  • Benefit: Many patients continue visiting their PCP for medication management and regular INR testing. A trustworthy PCP is also beneficial to have as a starting point for any new medical concerns that may arise during your treatment.
  • Personal story: I credit my PCP with saving my life because he was immediately able to identify (via phone nonetheless) that the pain in my leg and the pain in my side as a DVT/PE and instruct me to go to the ER immediately. While I do not see him for my ongoing INR and warfarin management (because he was more comfortable with me seeing a specialist due to the complexity of my case), he is integral in my care and remains my main point of contact for everyday concerns and illnesses.
  • More: Find more information at the American Academy of Family Physicians.

Hematologist

  • Role: Hematology is the study of blood in health and disease. It includes problems with the red blood cells, white blood cells, platelets, blood vessels, bone marrow, lymph nodes, spleen, and the proteins involved in bleeding and clotting. A hematologist is a medical doctor who applies this specialized knowledge to treat patients with blood conditions. Most hematologists are also trained oncologists (specializes in treating people with cancer)
  • Benefit: Any person unsure of why he or she experienced a blood clot, should consult a hematologist for further testing of genetic and autoimmune clotting disorders. In addition, a hematologist can manage INR and medication such as warfarin as well as any underlying diseases of the blood.
  • Personal story: I was referred to a hematologist in the hospital and he has been my primary point of care for my DVT/PE recovery and management of antiphospholipid syndrome (APS), an autoimmune clotting condition, since then. 
  • More: For more information visit the American Society of Hematology

Coumadin (or Anticoagulation) Clinic

  • Role: The Anticoagulation Clinic is a service established to monitor and manage the medication(s) that you take to prevent blood clots (i.e. coumadin/warfarin). Physically, it is a specified location within a hospital or a medical office that is staffed mostly by pharmacists. The pharmacists, working in conjunction with your physician, will check your INR and adjust your dose of warfarin.
  • Benefit: The clinic was set up to be easily accessed to get your INR drawn and know your results immediately. It can eliminate having to make an appointment to see your doctor every time you have an INR check. It is more like a “quick-service” treatment than a full-fledged doctor appointment and should be used in-between doctor (and not as a substitute for) doctor visits.
  • Personal story: There is a Coumadin Clinic where I live, and I was given the option to have my warfarin monitored there, however, I chose not to. I achieve the same results by visiting the hospital walk-in lab who then directly communicates my results (within an hour or so) to my hematologist who then follows-up with me.
  • More: Ask your hematologist or PCP if there is a Coumadin Clinic near you and if it would be beneficial to your care.

Pulmonologist

  • Role: A pulmonologist, or pulmonary disease specialist, is a physician who possesses specialized knowledge and skill in the diagnosis and treatment of pulmonary (lung) conditions and diseases. Pulmonology is a subspecialty of Internal Medicine.
  • Benefit: A pulmonologist generally manages complex pulmonary problems stemming from emphysema, tuberculosis, asthma, complicated infections of the chest, the pulmonary complications of AIDS, injury, and complications of respiratory diagnostic and therapeutic procedures, which often could include a PE. If you have a PE and any underlying respiratory concerns, a pulmonologist may a good option for follow-up care.
  • Personal story: I was evaluated by a cardiologist in the hospital, but do not see him for ongoing care at this time.
  • More: For more information about pulmonology, visit the American College of Physicians.

Cardiologist

  • Role: A cardiologist is a doctor with special training and skill in finding, treating and preventing diseases of the heart and blood vessels.
  • Benefit: If you have survived a blood clot, you may also have damage to your heart and vessels/valves in the heart. A cardiologist is the best person to assess and provide ongoing treatment for any damage caused by a PE, including an enlarged heart, high blood pressure, pulmonary hypertension, etc.
  • Personal story: I was evaluated by a cardiologist in the hospital, but do not see him for ongoing care at this time.
  • More: For more information about cardiology, including inspirational patient stories, visit the American College of Cardiology.

Rheumatologist

  • Role: The role of the rheumatologist is to diagnose, treat and medically manage patients with arthritis and other rheumatic diseases, often including autoimmune diseases. These health problems affect the joints, muscles, bones and sometimes other internal organs (e.g., kidneys, lungs, blood vessels, brain). Because these diseases are often complex, they benefit from the care of an expert. Only rheumatologists are experts in this field of medicine.
  • Benefit: Many times, blood clot incidents like DVT or PE can be the cause of something autoimmune going on. A rheumatologist specializes in these diseases and their side effects.
  • Personal story: Since I have antiophospholipid syndrome (APS), my hematologist referred me to a rheumatologist to best monitor any ongoing or new symptoms that could be related to lupus. APS, blood clots, pleurisy (inflammation of the lining of the lungs) and low platelets are all things I have or had that could also be indicators for lupus. I see my rheumatologist about every six months or when needed. He communicates directly with my hematologist.
  • More: For more information, including how to find a rheumatologist in your area, visit the American College of Rheumatology.

A person recovering from a blood clot may also see these specialists for follow-up and/or ongoing care:

  • Vascular Surgeon – A vascular surgeon is a specialized surgeon of all parts of the vascular system, arteries and veins, except that of the heart and brain (i.e. to repair veins, insert a filter or catheter, etc.)
  • Pain Management Specialist – A pain management specialist is a physician with special training in evaluation, diagnosis, and treatment of all different types of pain, including acute pain, chronic pain and cancer pain and sometimes a combination of these for a variety of reasons including, but not limited to, surgery, injury, nerve damage, and metabolic problems such as diabetes (i.e. to mange pain after a DVT/PE or as a result of underlying issues, etc.).
  • Endocrinologist – An endocrinologist diagnoses and treats hormone imbalances and problems by helping to restore the normal balance of hormones in the body, particularly in thyroid disease and diabetes (i.e. many people who have suffered from a blood clot also suffer from some type of hormone imbalance).
  • Neurologist – A neurologist treats disorders that affect the brain, spinal cord, and nerves, such as stroke, multiple sclerosis, headache disorders, infections of the brain and peripheral nervous system, movement disorders, neurodegenerative disorders, seizure disorders and speech disorders (i.e. to find out what is causing headaches, stroke or cognitive concerns after a blood clotting episode, particularly if a blood clotting disorder/mutation carries a neurological component or symptom).
  • Radiologist/Interventional Radiologist – A radiologist employs the use of imaging to both diagnose and treat disease that is visualized within the body (i.e. an imaging scan or ultrasound). Interventional radiology is a sub-specialty of radiology which utilizes minimally invasive image-guided procedures to diagnose and treat diseases in nearly every organ system (i.e. as an alternative to having surgery as the first option to a problem).
  • OBGYN – OB is short for obstetrics or for an obstetrician, a physician who delivers babies. GYN is short for gynecology or for a gynecologist, a physician who specializes in treating diseases of the female reproductive organs (i.e. to manage high-risk pregnancies, heavy menstrual flows, blood clots during pregnancy, etc.).

As you can see, ongoing care will vary greatly from individual to individual, depending on the reason for a blood clot, damage done, individual patient and underlying or extenuating factors. This list is by no means all-inclusive or exclusive either as there are many different options for treatment and specialist available.

The bottom line? I think it is beneficial to see a team of doctors for treatment of DVT and PE. In my case, my care started with a PCP and a hematologist and I was referred to additional specialists depending on individual factors, for example, I see an endocrinologist for an underlying thyroid disease. You may regularly visit an anticoagulation clinic for medication management. Recovery from a DVT and/or PE definitely requires follow-up care in medication management, short and long term complications and monitoring all organ systems in the body to ensure no additional damage has occurred or is occurring. Sometimes, a DVT or PE might be the result of an underlying condition or illness that may be not be discovered, unfortunately, until after experiencing a blood clot, as in my case. My personal level of care currently includes my PCP, hematologist, endocrinologist and rheumatologist.

Reader Writes In. What specialist do you see and for what part of your recovery? Do you also need to see or be referred to an additional one? Are you often overwhelmed or concerned about the amount of doctors you see/have seen? How do you best manage your ongoing care in terms of specialists?

There is hope for healing and you are not alone,

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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!

 

How to Prepare for Your First Follow-Up Appointment

It can be very overwhelming and scary in the hospital, much less after you are discharged and on your own. After four days in intensive care battling for my life and nearly a week total in the hospital, I was in no frame of mind to ask questions about what happened to me when the time came – much less understand what was needed in terms of follow-up care. I was on some pretty intensive pain relievers and remember everything being very cloudy.  One day, I fell asleep while talking with my father with half a peanut butter and jelly sandwich in my mouth. I couldn’t carry on a conversation or keep my eyes open for more than a few moments at a time. I remember my first follow-up appointment vividly.  My husband went with me and thought of a few questions I did not.  I was overwhelmed, scared and very grateful to have a hematologist who had answers to most of my questions before I even knew to ask them. I know not everyone is that fortunate so I have put together a list of questions to ask your doctor on your first follow-up appointment.

Tips for your first follow-up appointment:
  1. Take someone with you, if you can. It can be hard to remember of retain what is being discussed.
  2. Take a notepad with you for the same reasons. Do not be afraid to write things down!
  3. Carry records with you from other doctors/hospitalizations that you want your current doctor to know about or have copies of.
  4. Take your list of questions printed ahead of time (or print this list out for reference).
  5. Schedule your next visit prior to leaving. Even if you are given the option, don’t wait so you don’t forget.

Once you are ready for your follow-up appointment, here are some questions you may consider asking, especially early-on in your treatment and diagnosis.

Follow-Up Appointment Questions*

How serious is the extent of the damage from my clotting incident (PE/DVT)?
  • Were any of my organs damaged (heart, lung, etc.) and if so, do I need to take any additional steps to treat?
  • What is the extent of the damage to my veins?
  • Do I (or when do I) need to get a follow-up scan to check the status of the (above) issues?
How will my clot affect my home and work life?
  • When can I return to work?
  • Will I need any special accommodations at work like a chair, stool or the ability to move around?
  • When can I return to exercise? How often and how intense?
  • Do I have any lifting restrictions?
  • Do I have any dietary restrictions?
  • Do I have any travel restrictions?
  • Can I get pregnant and/or breastfeed?
  • What types of over-the-counter medications can I take?
  • Do I need to make any lifestyle changes? (i.e. smoking, diet, exercise, etc.)
What caused my clot?
  • Request testing for genetic and autoimmune clotting conditions? (i.e. Factor V, MTHFR, Antiphospholipid Antibody Syndrome, etc.)
  • Based on the cause, what are my chances of a reoccurrence of a clot? What do I need to be aware of if a reoccurrence should occur?
  • Do I need to see a(nother) specialist? (i.e. Hematologist, Rheumatologist, Pulmonologist, Neurologist, etc. [Please note: Based on my personal experience, I recommend seeing a Hematologist, especially if you are facing any genetic or autoimmune clotting conditions]
  • Do  I need to be concerned for any family members, including children, who may be at risk for this condition?
Who is the primary contact for my ongoing care?
  • Do I need regular blood draws (INR checks) and where should I go to get those done?
  • What is the procedure for INR checks? (i.e. Are they scheduled or walk-ins? Do you call for results or does the doctor contact you? Etc.)
What is the short-term and long-term prognosis for my condition/future clotting?
  • What can I expect to feel physically in the next month, three months, six months, etc.?
  • What can I expect to feel emotionally in the next month, three months, six months, etc.?
  • How will I know I am improving? How will I know I am not improving?
  • How long can you expect my leg to recover? My lung to recover?
  • What long-term complications do I need to be aware of?
What is the course of treatment for my diagnosis?
  • Do I need to schedule any follow-up scans or tests at this time?
  • What options do I have for treatment? (i.e. different medications)
What medications will I need to take?
  • Who manages my medication?
  • What are the benefits and risks of taking this medication?
What is your preferred method of contact? (i.e. phone, email, fax, etc.)
What types of incidents/concerns do I need to alert you of? (i.e. If I fall and hit my head; If I cut myself; If I take an over-the-counter medication, etc.)
Can you provide any resources for further reading?

Share your story. Do you have any questions to add? Did you ask your doctor any of these questions? What was the hardest question for you to ask? Did your physician take the time to talk to you about your concerns or did you feel dismissed?

There is hope for healing and you are not alone,

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*Please note, these questions are meant to serve as a guideline based on questions I either asked at my follow-up appointment(s) or wished I had asked. What you ultimately discuss is between you and your medical team.  

 

 

 

 

What is Antiphospholipid Antibody Syndrome?

What is APS Cover

June is Antiphospholipd Antibody Awareness Month. But, what is Antiphospholipid Antibody Syndrome, anyway?

If you’ve never heard of Antiphospholipd Antibody Syndrome (or APS), you are not alone although, the disease is not as uncommon as you may think – as people are tested for different blood clotting disorders after a clotting incident, more and more people are being found to have APS. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women and while APS is believed to be responsible as the cause of multiple miscarriages, thrombosis, young strokes (up to one third of people under 50) and heart attacks, it is rarely discussed as a relevant health issue, particularly for women. Still, just about 1% of the U.S. population is believed to have APS making it a rare and sometimes ignored condition.

So, what is it exactly? Antiphospholipid Antibody Syndrome is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. Antibodies are proteins in the blood and body fluids that bind to foreign invaders like bacteria and viruses and help the immune system destroy and remove them. Sometimes the immune system doesn’t function properly and makes antibodies against normal organs and tissues in the body or, in the case of APS, proteins in the blood. There are two known forms of APS. APS may occur in people with systemic lupus or other autoimmune disease, or in otherwise healthy individuals (Source: http://apsfa.org)

In people with APS, blood basically clots when it shouldn’t creating the potential for serious side effects such as DVT, PE, heart attack, stroke, aneurysm, etc. Women with APS may have difficulties with pregnancy. During pregnancy, women are at higher risk of developing blood clots and preeclampsia (high blood pressure). In APS, pregnancies are often lost because blood clots form in the placenta and starve the baby of nutrition. Some women may have trouble getting pregnant, while others may experience repeated miscarriages. Blood clots that develop in the placenta can cause fetal growth problems, fetal distress, premature birth, or pregnancy loss. Expert care and close monitoring of the pregnancy is essential by a doctor knowledgeable about APS or high-risk OBGYN (Source: http://apsfa.org).

APS is a lifelong disease, of which there is currently no cure. In general patients who have had a blood clot (i.e., stroke, heart attack, DVT, PE) and have persistently positive tests for antiphospholipid antibodies should be treated with anticoagulants (such as Warfarin) indefinitely. Discontinuing treatment after a fixed period of time, such as six months, is common after a clotting incident, but may be quite dangerous in APS patients. In some patients with a history of blood clots, antiphospholipid antibodies may disappear after a certain period of time, making them hard to detect during routine lab tests. It is not known whether it is safe to stop anticoagulation in this situation of transient antibodies. Consultation with a doctor experienced in treating APS, often a hematologist, is recommended for the treatment of APS (Source: http://apsfa.org).

APS is not only a difficult disease to understand, but difficult to explain to others as well. A person with APS may look exactly like they did before – on the outside. But, he or she is struggling internally with a disease that always has the potential to cause serious and life-threatening complications. That is not to say people with APS have to stop living normal lives, it just means they must be aware of what is going on in their body including paying attention to symptoms of potential blood clots, taking medication regularly as prescribed, following up with a doctor or specialist as recommended and taking care of oneself.

In terms of autoimmune diseases, APS is actually one of the more common ones, but is often not tested for or misdiagnosed by physicians. If you have suffered a clotting incident, please make sure the hospital (or your doctor) checks for things like autoimmune and hereditary clotting factors.

I was diagnosed with APS after my PE, thanks to the persistence of one hematologist who would not settle for birth control being the only contributor to my blood clots. After my diagnosis, I remember being very confused and unable to comprehend what the doctor was telling me. As time has gone on, I have found connecting with others has been the most valuable form of healing for me. I have also sought out as much information about APS as I can and while resources are limited at the present time, there are some organizations out there dedicated to raising awareness and spreading information about APS and other blood disorders. You can find my list of helpful resources below-

Resources for People Diagnosed with APS

  • APS Foundation of America, Inc. – Founded in 2005, The APS Foundation of America, Inc. (APSFA) is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS).
  • Antiphospholipid Syndrome Facebook Support Group – Antiphospholipid syndrome (or antiphospholipid antibody syndrome) (APS) is a disorder of coagulation, which causes blood clots (thrombosis) in both arteries and veins, as well as pregnancy-related complications such as miscarriage, preterm delivery, or severe preeclampsia. The syndrome occurs due to the autoimmune production of antiphospholipid antibodies (aPL). The name Antiphospholipid Syndrome is a misnomer because the target antigen of aPL is not phospholipids but actually plasma proteins that bind to phopholipids (eg: [[β2-glycoprotein 1]] or prothrombin). This is an open support group where we come together to talk about it.

Share your story. Have you been diagnosed with APS? Have you ever heard of APS? What is most troubling or interesting to you about the disease? Has APS changed the way you live your life?

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,