Get Your Recovery on Track with INRTracker

Get your recovery on track with INRTracker

Being diagnosed with a blood clot is scary. It’s confusing, it’s overwhelming and all too often, patients are discharged from the hospital with little to no support from their doctors and medical providers. While I had a doctor who was very supportive of me and my recovery, I did not have a positive experience with the physicians who treated me in the hospital. I was handed a paper detailing instructions that made little to no sense of me between all the confusion, pain and medications I was taking. I asked a lot of questions prior to discharge, but can’t remember or didn’t fully understand the answers. In addition, the doctors who discharged me where clearly irritated that I asked so many questions. I left feeling frustrated, confused and very much alone.

One of the things I found most complicated about my diagnosis and then treatment was first understanding and then managing my INR. For starters, I didn’t even know what an INR (or international normalized ratio) was or why it mattered what my numbers were. I soon found out that INR is a measure of how long it takes for blood to clot and it mattered because if my INR was too low, it could mean I had a tendency to clot again or if it was too high, I could run the risk of bleeding internally. From there, I wondered about things like vitamin k and diet consistency; when to take my medication and how much to take; what kind of risk I was facing for clotting again and what to do about things like exercise. Nothing was the same – and everything was an issue since my diagnosis. Nothing was simple, easy, clear-cut or obvious. It was like learning to live all over again.

Even just a few years ago, there were not as many resources about DVT and PE recovery as there are today. I like to think that as resources grow and become more readily available, it must also been we are raising awareness about blood clots. One of the resources more recently developed to help with blood clot recovery is INRTracker.com.

INRTracker.com is free and personal online app to help Warfarin patients manage their INR, medication dosages, vitamin K, doctor appointments, compression stockings and more. In fact, there are 13 different health variables you can manage with INRTracker.

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And, when everything else seems really complicated during recovery, the information at INRTracker is really straightforward to input.

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While it isn’t necessarily ideal for me to log in everyday and note whether or not I have taken my medication, INRTracker would be really helpful to note a medication adjustment, and so far, I have been using it to track my exercise, menstrual cycle, blood pressure and upcoming appointments. Once you start tracking information, you can view your information through concise, customizable charts, which is a feature that I really like. You can also generate your own reports to take to your doctor, a feature that is invaluable when you are trying to remember something or have a question.

Screen Shot 2015-05-18 at 4.58.52 PMINRTracker also has some other great tools that may be helpful during recovery and adjusting to living with the complications of DVT and PE. They are the INR Levels Tool, Vitamin K Food Database and DVT Calculator.

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The INR Levels Tool is designed to help you understand your desired INR value and read about the impact that INR level will have on your Warfarin treatment. And, for any patients who are taking warfarin, it is important to understand the impact of vitamin K on your medication. The Vitamin K Food Database is a comprehensive listing of over 4,500 and their vitamin K content to help ensure you are getting enough vitamin K in your diet. The DVT Calculator and PE Calculator are two tools I also find very useful, particular if you are concerned about another blood clot. While these calculators could help determine if you or someone you know is experiencing a DVT or PE with a specific set of doctor-recommended questions, it is also important to note medical attention should be sought in either case and especially in the case of a PE, which can be life-threatening. INRTracker also offers some very important articles to help educate you about blood clots, including medical terms, diagnosis and tests run by doctors.

What I love about INRTracker is it was created by people who have real-world knowledge of DVT and PE, it’s free, completely customizable and offers a wealth of information all in one, easy to navigate place. What I wish it had is a mobile component so that I could keep track of all of my information on the go (like when I am getting my INR results from the lab) and per the creators, a mobile app is in the development stages.

Connect with INTracker on Facebook and Twitter for more information and updates.

Reader Writes In: How do you manage your life after a blood clot? Have you used INRTracker? Will you give it a try? Have you found any other successful programs to keep you on track?

There is hope for healing and you are not alone,

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The Truth Is

The truth is, I was going to write a post about blood clots in the news lately.

The truth is, now did not feel like the right time to share the news updates. What does feel right, is sharing some truths about blood clots and recovering from blood clots. This is my message to you today.

The truth is recovery is hard. Very hard. Recovering from a DVT or PE is not like recovering from a cold, flu, surgery or injury. It is more like recovering from a heart attack, stroke or cancer. There are days when I feel miserable and days when I feel great and no apparent way to know which day will fall where and when. It is hard to plan things, hard to make commitments, hard to get active, hard to eat right and hard to take care of myself. It’s even hard to get out of bed, get dressed, do my hair, go to work and drive my car. There are some days when everything is hard – no matter how simple the task. I’m not the same person I was pre-PE and I can’t ever go back to that person. Experiencing a traumatic situation that also has the potential to be deadly, changes us in a way so that we can never go back to the person we once were. Are we better or worse? I don’t know, but I do know we are different. I think about situations differently since my PE (everything requires extensive thought and weighing of actions vs. reactions); I respond differently since my PE (I am much more emotional and sensitive, if that’s even possible); and I see life differently (it’s too easy to take it for granted, I almost did and I almost didn’t get a second chance at it). The truth is recovery from a DVT and PE is hard.

The truth is this hurts. Along with being hard, recovering from a DVT and PE just hurts. It hurt so bad in the beginning, I was willing to sacrifice a lung and a leg (even while being a runner) to make the pain stop. It hurt to walk, it hurt to breathe – two very basic tasks so many people take for granted. It hurt to talk, to laugh, to hiccup, to sneeze and to put on pants. As time has gone by, the physical pain has lessened for me, but the emotional pain remains. Recovering from a DVT and PE is a very lonely time and the emotional scars of that loneliness and isolation are not so much like scars yet, but more like open wounds. It hurts to have friends and even family not understand what you’re going through, why it’s taking so long to recover and why you can’t do the things you once did. It hurts to always explain why you’re tired, not well or that yes, you’re still recovering from that lung thing that happened to you. It hurts to feel like sometimes no one cares, no one will listen and no one even gets the pain you’re in. The truth is, recovering from a DVT and PE hurts.

The truth is this is scary. I remain highly anxious since my DVT and PE. There are days when I am nearly convinced it is happening again because I feel a pain in my leg or a stab in my lung. There are nights when I can’t sleep because I replay the story of my PE over and over again in my head – I should have known something was not right, I should have gone to the doctor earlier; maybe if I did, I wouldn’t be in so much pain now. There are nights when I wake up from a nightmare or pain and can’t fall back to sleep because what if I don’t wake up again in the morning? Tests, scans, MRI’s, blood draws, doctors’ visits, new diagnosis, hospitalizations – are all scary. Hearing words we don’t understand like INR, D-Dimer, Factor V, APS, oxygen level, warfarin, blood thinner, bilateral, chronic and acute are scary. The truth is, recovering from a DVT and PE is scary.

The truth is you are not alone. When I was first discharged from the hospital, I had never felt so alone. While I had family and a few close friends who supported me through my hospitalization, none of them have experienced a PE. None of them know exactly what it feels like. I knew no one in my personal life who had gone through what I was going through. I turned to the internet for help and found some resources there, but was still lacking in real-life, down-to-earth, recent stories of people who were going through what I was. Most people I came across, like me, had not even heard of a DVT or PE before it happened to them. I wanted to change that and created BCRN within months of my discharge. You are not alone, you are never alone. If you have a question, someone else has the same question. If you have had an experience, emotion or thought, chances are, someone else has also had it. Share, talk, communicate, find us on Facebook, share here or send me a message. This is a network of people who have been or are going through the same pains, fears, anxieties, challenges and triumphs as you. The truth is, you are not alone in recovering from a DVT and PE.

The truth is it does get better. I can’t tell you when and I can’t tell you how – recovery is different for each and every person. What I can tell you is that it does get better. Now two years out from my DVT and PE, I feel remarkably better than I did at a few weeks, a few months and a year. While I still face day-to-day challenges including chronic fatigue, leg pain, difficulty breathing in hot or cold weather, regular intravenous blood monitoring, managing medication and doctors’ appointments, it is better than it was. Progress is slow and improvement feels miniscule at times (maybe because is it), but it does get better. I have to believe it will get better for you too and while we may face new challenges from here on out, I believe in time, we do get better and there is hope for recovery and healing.

Reader Writes In. What is your truth?

There is hope for healing and you are not alone,

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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.  

 

 

 

 

Did I take my medication?

Did I take my medication

I have never been good at taking – or more like remembering to take – my medications. As you know, it is imperative for individuals receiving anticoagulation therapy to take their blood thinning medication on a daily basis. An anticoagulant helps your body control how fast your blood clots; therefore, it prevents clots from forming inside your arteries, veins or heart during certain medical conditions. If you have a blood clot, an anticoagulant may prevent the clot from getting larger. It also may prevent a piece of the clot from breaking off and traveling to your lungs, brain or heart. It is important to note, the anticoagulant medication does not dissolve the blood clot. With time, however, this clot may dissolve on its own. Dosages for warfarin (or Coumadin), a common anticoagulant drug, ordinarily range from 1 mg to 10 mg once daily (Source). The doctor will prescribe one strength and change the dose as needed (your dose may be adjusted with each INR result). Not only is it hard to remember to take medications, especially if you are not used to it, but it can be even more complicated if dosages vary day to day or change periodically. It is no surprise that people taking anticoagulants may often wonder, did I take my medication? Read on to discover my top tips for keeping track of yours.

OatBook
OATBook reminder

Did I take my medication? Not yet!

The OATBook is a mobile phone app that helps you track, monitor and store your complete INR history in one place; keep your dosage times consistent and never miss a dose; and stores your appointments and reminders. It makes managing your warfarin easy! I literally could not manage my INR/medication without it and it has become a crucial part of my Oral Anticoagulation Therapy, as the name OATBook suggests. The OATBook took a little time for me to get used to, but once I did, I quickly found it was essential to managing my warfarin dosages, INR levels and blood draws. Plus, it lets me know via an alarm when to take my medication daily (11:32 p.m.) and will continue to go off until I check that I have done it. It also reminds me when I need to get a prescription refill. It costs between $1.99 and $2.99 and is only available for iPhone presently. You can find it HERE. Also, be sure to read my full OATBook review and see more screenshots of the app.

Pillbox
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Easy to refill, easy to remember.

I use a pillbox in conjunction with OATbook. My phone tells me when to go take my medication via the app and the pillbox ensures that I actually did it if there is ever a question later (i.e. right after I go to bed and I get back up thinking did I take my medication? The pillbox is very inexpensive (I’ve seen them for a $1 at the dollar store!) and can be found at any drugstore, pharmacy or grocery store. It’s also great if you are going to be away for a few days, you can just take the box with you and not have to worry about carting around your pill bottles. I fill up my pillbox at the beginning of each week (depending on my dosages from the doctor) and am good to go until the next blood draw.

Smartphone Calendar/Alarm/Reminder
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Essential? Maybe so!

According to forbes.com, more than half of us have a smartphone nowadays. Why not use yours to keep track of your medication? Use your calendar, notepad, reminders, or alarm clock to note when and how much medication to take. You could also set an alarm on your watch. Whatever works for you – works!

Traditional Calendar/Notebook
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There’s nothing quite like it…

Write it down – the old fashioned way. Check it off in your calendar, include it in your daily reflections, add it to your To-Do list or put a post-it on your bathroom mirror.

Share your story. How do you remember to take your medication? Do you have any great tips to share? Do you struggle to remember to take your blood thinners?

There is hope for healing and you are not alone,

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How to track and manage your INR with OATBook

OATBook Review Title Photo

I left the hospital after a total of ten days, five of which were spent in the cardiac intensive care unit (ICU) after my DVT and PE. I wasn’t even sure what happened to me – although I had a vague idea that I was lucky to be alive from what I kept hearing – and was even less sure of what would happen next. I left on Arixtra injections, a cousin to Lovenox anticoagulant medication, only with less clinical research available and non-reversible if I were to be in an accident and have uncontrolled bleeding. I don’t think I even knew what that mean beyond, “Don’t get in an accident.” I heard the injection, which I was prepared to administer myself, but not prepared for the increasing difficulty of it, would keep my INR stable. ‘INR’ was completely new to me and something I hoped would go away in a week or two.  What is INR and how can you manage your INR with OATBook?

INR stands for international normalized ratio. The INR provides some information about a person’s blood’s tendency to clot (which is often described as how “thin” or “thick” their blood is). There are several scientific factors as to why and how this number is evaluated to be as reliable as possible. A normal INR is approximately 1.0. People taking the blood thinner warfarin (oral) typically have a target INR of 2.0 to 3.0, although it all depends on your body and what you and your doctor have discussed. People with an INR higher than the normal range who aren’t taking warfarin may have a medical condition that needs further evaluation. A low INR is rarely significant.

Injections (such as Arixtra or Lovenox), while extremely expensive (I was looking at $2,300 before my deductible for 20 injections), are often easier to regulate in terms of INR as long as you are able to give yourself an injection at the same time each day, which I was. When taking an oral anticoagulant such as warfarin (Coumadin), a patient usually has to have weekly blood draws (at least in the beginning) to monitor INR.

I was on those injections for ten months as a result of my INR’s inability to stabilize, making it increasingly difficult for my body to transition to an oral anticoagulant such as warfarin. When my doctor did try to switch me to the warfarin, I became immensely confused with all of the different dosages and blood draws – not to mention remembering to take my pill – in part because I was also battling slight loss of cognitive function and memory as a result of my illness and trauma. While I was told this was a normal side effect, it was difficult because when the nurse called to give me my dosages for the week, they literally went in one ear and out the other before I even had a chance to write them down. So, I would guess (and get it wrong) and my INR suffered greatly in terms of highs and lows, forcing me to go back on the injection each time.

I came off the injection again at the beginning of April of this year and have remained mostly stable since then. Warfarin is more practical for many because it is cheaper, has been a part of long-term safety and side effects research and is much easier to administer. People have been on it for life and have done okay, if not well – people have not been on Arixtra for life to date. It is reversible if I were to be severely hurt or injured, which takes a big worry off my mind.

What’s different this time? Well, it is true that my cognitive abilities and memory have grown much stronger, and I am better now than I was ten, six or even three months ago, but the transition to oral anticoagulation therapy would not have been possible this time without the OATBook. The OATBook is a mobile phone app that helps you track, monitor and store your complete INR history in one place; keep your dosage times consistent and never miss a dose; and stores your appointments and reminders.

I literally could not manage my INR without it and it has become a crucial part of my Oral Anticoagulation Therapy, as the name OATBook suggests.

The OATBook took a little time for me to get used to, but once I did, I quickly found it was essential to managing my warfarin dosages, INR levels and blood draws. Plus, it lets me know via an alarm when to take my medication daily (11:32 p.m.) and will continue to go off until I check that I have done it. It also reminds me when I need to get a prescription refill-

SS medication is almost out on home screen

It is invaluable to me that I can also set a reminder to get my INR checked (I have a standing order at the hospital clinic so I choose when I want to go, as long as it is the same time each week) and the app charts my levels-

SS graph of INR range

I can also send or save it if I need to take it to a doctor (who is not my hematologist)-

SS email your graph

You can see, for May 1, how I got my INR checked, had an appointment and checked off that I took my pill that night-

SS options screen with notes, meds, inr

You can customize OATBook to remember the important things like what your therapeutic INR level is and there is also a place on each day to record notes-

SS settings where you can set your INR range

If you are are like me and your dosage changes daily, you can set each day to be different in OATBook or you can have it auto-fill the same dosage each day for the month-

SS entering your dosage

 

You can download OATBook for iPhone and you can also find a user guide and answers to frequently asked questions. I found the customer service was very helpful and prompt when I didn’t realize you swipe right to left on the days to make the options appear (it took a minute to get used to, but I have no problems now).

Share your story. How do you keep track of your INR? Was it or is it a struggle for you? Have you heard of or used OATBook?

In healing there is hope and you are not alone,