iPhone Archives - Blood Clot Recovery Network

How to Stay Safe on the Go with Road ID

I’ve always been cautious and tend to worry about things I can’t always control – things like the weather, my health and plane crashes. I’ve always been a what-ifer, and I tend to worry more about what could happen rather than what actually did. I was on my way to decreasing my time spent worrying and improving my self-confidence until my DVT and PE in June of 2012 that began a long, downhill landslide of shattered confidence, broken dreams and more anxiety than I had ever faced before. With the prognosis of being on blood thinners – at 31 years old – for the rest of my life, I suddenly found I was worried about almost everything. What if I fall? What if I get in a car accident? Cut myself? Hit my head? Can’t speak for myself in an accident? The thoughts started flooding in and my anxiety increased, mostly when I left the house or when I was home alone. Sure, I can wear a medical alert bracelet and carry a wallet card, but what if I don’t have these things with me when the worst happens? I quickly realized I had to do something to ease my mind and feel safe about living life (even normal, everyday activates like going to the grocery store made me nervous) and soon discovered how to stay safe on the go with Road ID.

You may have heard of Road ID. If you are a runner, cyclist, triathlete or just an active person, Road ID is for you! They make emergency medical alert bracelets that I recommend. Plus, I love what they say about their products, “It’s not just a piece of gear – it’s peace of mind.”

What you may not have heard of is the Road ID App.

I first found out about this app in an online awareness support group and decided after using it, it is too good not to pass on to you. It is completely free, easy to use and delivers a whole lot of peace of mine.

Not all of my medical bracelets have the space to put In Case of Emergency (ICE) contacts on them and even then, there are some days that I just don’t wear one. However, I don’t think there has ever been a day when I have forgotten to take my phone with me. The first feature of the Road ID APP is to provide a pace to put your pertinent medical information, ICE contacts and who you are – right where any first responder would see them, on your lock screen. I have ICE in my phone, like many people, but that won’t do any good since my phone is password protected at all times. The screen has a place to put who you are, your city, important medical info and up to three contacts with phone numbers of your choosing. You can customize it with as little or as much information as you want. The app also provides easy instructions as to how to set your ICE info as the front lock screen. Mine looks something like this:

Having my screen set to this has provided me a great sense of relief ever since I put it on my phone about a week ago. You could set the screen to look like this at all times (like I have) or you could set it to lock like this when you go out for a workout. Being on blood thinners and having the medical history I do, the only solution that works for me is to leave it there all the time. ICE is in important, so if you don’t already have it in your phone, please put it there or consider using this app! I know for a fact first responders will check your phone if you have no other identification with you. Three years ago, my mother was running in a park close to home and had something happen. She had no known medical conditions that would have caused her to wear ID so she did not. A police officer on the scene was able to contact me (one of her ICE contacts) from her phone and let me know which hospital to go to. Sadly, my mother did not survive what happened to her. And while we did not make it to the hospital before she passed, we knew where to go, what details were available about what happened, and I also have the peace of mind believing that everything that could have been done to save her life, was done that day and as quickly as possible.

The second thing the app does is provide a service called eCrumb (or electronic breadcrumb) feature that I also find invaluable if you are going to be out on a workout (run or bike) or even out taking a walk. This feature tells someone (via text directly from the app) that you are going for a run or workout. YOU set a timer for how long you anticipate being out (you can add time as you go right from your phone or cancel the crumb at any time). You can notify up to five people of your workout and they can track you in real time via a text link that is sent to them. They do not need to have the app. While out on your workout, if you stop moving for more than five minutes, the app will send the person (or people) on your list a notification. If you have been inactive for five minutes, a very loud alarm goes off on your phone so you can extend the time (or disable the alarm, for example, if you needed to rest for more than five minutes) before the message goes out. Road ID suggests you customize the alert message to say something like, “Please call or text me to see if I’m okay” in case an unintentional alert is sent out. If the stationary alert is issued, the app sends a link to your contacts (that you sent the “I’m going for workout” message to in the first place) with the last known location and tracks your phone for the next 30 minutes after the alert is sent out. The eCrumb tracking location services update about every minute while you are using the app according to Road ID.

Currently the Road ID App is only available for iPhone, although Road ID is working on an Android version. It’s completely free and Road ID will send you a coupon for a physical Road ID after your download it!

Share your story. Would people be able to access your ICE contacts in an emergency? Have you used this app or a similar one? Will you? Do you have a Road ID or will you consider getting one? Do you tell someone when you are going for a walk or run?

There is hope for healing and you are not alone,

How to track and manage your INR with OATBook

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-

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-

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

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-

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-

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-

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,

How to Stay Safe on the Go with Road ID

How to track and manage your INR with OATBook

Sign Up for Email Updates

Meet Sara, Your BCRN Blogger

Connect with BCRN

Hope for Healing After Blood Clots

Get Personal Online Support

What You Need to Know

Online Support Communities

Helpful Places

Tweeting Now