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FAQ: Is It Normal To Have Symptoms After The Clots Are Gone?

7/4/2016

4 Comments

 
The time that it takes pulmonary embolisms to go away and the time that it takes to heal from a pulmonary embolism are different.  Blood clots in your lungs and DVTs cause damage.  The damage is what causes symptoms.  Blood clots in your lungs can cause heart damage, lung damage, and psychological damage.  A deep vein thrombosis can cause vein damage and valve damage.  Both of these conditions may cause your to become less active.  Lowered activity causes deconditioning and fatigue.

Symptoms of your blood clots will last longer than the clot itself.  Bodies often dissolve clots pretty quickly.  After the clot is gone your body goes to work healing the damage.  Healing can take a long time and may include fatigue, pain, and clot symptoms.  Talk to your doctor about your healing and your symptoms as it is possible that he or she can help you have a less irritating recovery.

While your blood clots are gone, the damage is not gone.  Be patient and keep your doctor informed about your recovery.  Gradually increase activity as you are able.  Most survivors find the symptoms have greatly improved 1-2 years post diagnosis.  Remember that your body is healing from major trauma.  Think about how tired a cold can make you for weeks after the cold is gone.  Now remember that a cold causes much less damage to your body.
4 Comments

Coping With a Pulmonary Embolism - Life As a Survivor

6/28/2014

26 Comments

 

"We know what is wrong. You have blood clots in your lungs." These are words that survivors come to be grateful for and to hate. As a survivor we are often thankful that we finally have a diagnosis and a treatment for symptoms that for many of us have been happening for an extended period of time. Others are thankful to simply be alive. They were the ones that collapsed and were returned to life by acts of God, fate, and medical miracles. The doctors patch us up, test us, clear us, and send us home on anticoagulation and filled with questions.

As patients we start off with many unanswered questions. Why did this happen? How long is recovery? What are these nagging symptoms? We are frustrated when we don't have answers to these questions but these questions aren't the real challenge.   These questions will be slowly answered by hiring new doctors, asking questions over and over again, and reading materials from patient support and advocacy groups. The real questions, the ones that are truly a challenge are the ones that nobody can answer. "What do I do now that I survived?" "Why did I survive?" "How do I find faith in my ability to survive?"

If these ruminations sound familiar you are a survivor. Know that your brain is an organ. If your brain survived your PE without any symptoms I would be in shock. Your lungs, heart, body, and brain are all affected when you have clots in your lungs. Common complications include panic disorders, depression, and anxiety. Feeling lost and/or afraid is normal and in many ways these feelings are a healthy part of your recovery.

So, what to do about them? First, let your doctors know that your brain is in need of healing. You may benefit from starting some medication to ease your symptoms. Councilling may also help you to deal with surviving. I used both of these techniques to help myself heal.

Here are some additional methods to assist your mind, body, and soul adapt to being a survivor:

  • Track your growth so you can see progress. A fitbit can do the work for you these days.
  • Ask your doctors if massage or Yoga would be safe and then try them out if your medical team okays these activities.
  • Try meditation. Search for "The Mediation Podcast" or "The Meditation Oasis" as both have free recorded meditations.
  • Try an app called "Breathing" to practice deept breathing that will be calming.
  • Realize your strength. You survived! You are not weak. Your body wend through the ringer and was OK. You can and will get through recovery.
  • Try a support group. Www.dailystrength.org has a great one.
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These are saguaro cacti and other fauna of the Sonoran Desert. Let them remind you how to survive. When the times are rough they live off water that they stored during the rainy years. They grow in harsh conditions and are amazing plants. The rough environment changed them into the wise old men of the desert. Survive and thrive as the saguaro does and find your inner strength and beauty.
26 Comments

Using Activity Trackers In Pulmonary Embolism Recovery And Prevention

11/10/2013

0 Comments

 
Activity trackers can be amazingly useful in pulmonary embolism recovery.  Many of them are able to track the amount, time of, and frequency of activity throughout the day.  This tracking is automatic and easy.  When I was in recovery I was tracking some of this information by hand.  Now there are sleek little gadgets to do the work for you.
After writing this article I became an affiliate of FitBit.  I love my FitBit so much that joining their affiliate program seems to make sense.  At this time I have received no compensation from FitBit, but I wanted to make sure that you were aware of my affiliate status. Sales of FitBits from this site generate income for the site's owner.
A BRIEF INTRODUCTION TO ACTIVITY TRACKERS 
PictureActivity Trackers - Juhansonin via Flickr (CC BY 2.0)
Activity trackers are small wearable devices that track the wearer's movements throughout the day.  They are similar to a pedometer but they are able to track more than just steps.  They are very easy to use.  Charge the battery, wear the tracker, and sync it with your phone or computer.

I have long been an advocate of tracking your recovery.  I found that logging data allowed me to see my own growth as a progressed through recovery.  I had my pulmonary embolism in 2008.  There were no activity trackers available.  I took walks that I timed, used a pedometer to count my steps, used a heart rate monitor watch, and measured my blood pressure.  Each of these measurements was hand tracked in a paper notebook.

FitBit OneMy Fit Bit One
The Fit Bit One is one of the many activity trackers on the market.  I bought one a few weeks ago after seeing family members with them at a family reunion.  My goal for my Fit Bit was simply to move more.  I have just started a work at home job and I know that it will be easy to gain weight.  As I have worn my Fit Bit One I have realized that it has a lot of potential in pulmonary embolism recovery and in the prevention of blood clots.  I am going to share some of the features of the Fit Bit One with you.  While I own a Fit Bit One, I know that other activity trackers have similar features.  I will share some of the other brands and the end of this article.

One of the best things about the Fit Bit One is that it is tiny and unobtrusive.  In my picture you can see my Fit Bit inside of its rubber clip case.  I wear it clipped to my bra.  You can't even tell that it is on when I wear it.  If you don't want it on your bra, or if you are a guy, you can wear it clipped on your pants waistband.  Fit Bit and other brands also offer models that can be worn as a bracelet.

Activity trackers often have the ability to track steps, calories burned, exercise activities, floors climbed, calories consumed, and sleep patterns.  Activity trackers also record time.  This lets you see when you were active and how active you were at times throughout the day.  (Check the specific models to see which of these features are available.)  Most activity trackers, like my Fit Bit One, sync with a smart phone and computer so that all of the tracking data can be stored, analyzed, and compared.  These features make activity trackers very useful for pulmonary embolism survivors.

HOW CAN ACTIVITY TRACKERS HELP IN PULMONARY EMBOLISM RECOVERY?
Activity trackers are very useful in pulmonary embolism recovery because of their ability to automatically track and record data over time.  Many of the new trackers don't even need a cable to sync with your smart phone or computer; they just automatically connect over a wireless connection as you go about your day.  This means that all you have to do is make sure that you have your tracker on.  As long as it is on, you are good to go.
Picture of Fit Bit's weekly emailFit Bit weekly email summary
Pulmonary embolism survivors can wear an activity tracker during recovery to track improvements in activity level.  My Fit Bit One sends me an email once a week with updates on my stats.  It gives me a little arrow to show me if I have improved that statistic from the previous week.  I can also go through my days one at a time on the Fit Bit website and or flip through my data throughout the day on either my iPhone or Fit Bit One.  Data is a great way to get an unbiased snapshot of recovery.  The more stamina that you have, the more steps you will walk in a day.  These numbers should improve throughout recovery.  

You can also use this data to set recovery goals for yourself.  Fit  Bit and other trackers allow you to set personal activity goals.  I started my Fit Bit One journey at 2,000 steps a day.  It took a while to get that number every week.  I then upped it to 2,500 steps a day.  You can set goals for any of the things that Fit Bit measures (calories, floors climbed, active minutes, and etc.). 

Another use for an activity tracker is to monitor weight during recovery and to assist in weight loss.  Weight loss decreases the risk of future clots and is a common recommendation from the medical community.  Fit Bit is able to track the calories that I eat and the calories that I am expending.  I can set calorie goals based on my weight loss needs.

ACTIVITY TRACKERS CAN HELP TO PREVENT PULMONARY EMBOLISMS
Picture of my Fit Bit computer log on dashboardFit Bit computer dashboard
I got my Fit Bit One to help me to increase my activity levels and to assist in weight management.  As I have worn my Fit Bit One I have realized that it is helping me to monitor my movement throughout the day.  Weight loss and movement are two of the most effective pulmonary embolism preventatives.  My activity monitor is assisting with both of these preventatives.  I knew that my Fit Bit would help me to track calories.  What I didn't realize was how useful its data logging is in my own pulmonary embolism prevention quest.

If you look at my Fit Bit dashboard you will see the graph in the upper left hand corner.  This shows me the hours of the day on the bottom and then puts a line in whenever I walk throughout the day.  i can also look at the floors that I climb or the calories that I burn.  This lets me check myself to see if I am getting up enough throughout the day.  You can see that on this day I didn't walk much after 6 PM or before 10:00 AM.  The later steps were likely missing because I looked at my computer around 5 or 6 PM.  The morning appears to have been largely inactive.  This tells me that I need to review my activity throughout the day to ensure that I am moving.  Individuals with a history of pulmonary embolism should move at least once every two hours.  My Fit Bit keeps an eye on me and lets me know when I am not doing this well.

FITBIT ON THE IPHONE
(Different activity monitors will handle their data in different ways.  Many are able to sync with a computer and a smartphone.  Make sure to check the models out though as some only store data on the unit.  I believe that the computer tracking that you see above is vital for a pulmonary embolism survivor.  I highly recommend that you pick out a tracker that is able to hook up with a smart phone and/or a computer.)

Throughout the day when I am not at my computer I use my iPhone to check on my progress.  I can look at my Fit Bit but it doesn't give me as much data and I wear it clipped to my bra so I can't see it in public.  The FitBit uses bluetooth to automatically update my iPhone as the day passes.  While you dot have to have a phone to use it, it comes with a USB dongle to sync with a computer, I love that I don't have to think about it when it is set up with my iPhone.

Each of these lines can be tapped.  When you tap the specific type of data, a chart comes up with a timeline.  Like the computer program you are able to see how that measurement varied throughout the day.  I find that simply watching steps to see when I have moved helps me to track myself.  I work at home and making sure that I am moving throughout the day is important.  This bit of feedback let's me know if I need to modify my habits.
FitBit timeline graph with activity levels as seen on an iPhone
Activity timeline on an iPhone
FitBit iPhone App
FitBit iPhone App
0 Comments

Cortisone And Other Glucosteroids Increase The Risk Of Having A Pulmonary Embolism.

4/11/2013

55 Comments

 
Picture
Pill Bottle
This week, doctors have shared another risk factor for pulmonary embolisms, DVTs, and other types of venous thrombosis.  The good news is that we now have another risk factor that we can avoid.  The bad news is that the risk factor is a critical treatment for many patients.  Glucosteroids, one of which is cortisone, have been found to increase the risk of having a venous blood clot by two to three times.  Even more problematic is that the form of the steroid doesn't matter.  Inhaled, injected, or swallowed, all glucosteroids increase the risk of a clot (although some forms are more risky than other forms).  

Doctors are already cautious about using glucosteroids due to their lengthly list of frequent, serious side effects.  This caution should continue.  The risk of clots is the highest after beginning a new steroid regimen.  The risk continues throughout the steroid use and then for at least a year after the steroid is discontinued.

The important thing to learn from this study is that every patient needs to discuss this risk with his or her doctor.  It would be a good idea to discuss the risk of the steroid, other risks that the patient has, and possible ways to lower the risk of clotting.

To read more about the study see http://ow.ly/jYWTF 

Picture By Kevin Dufendach [CC-BY-3.0)], via Wikimedia Commons

55 Comments

Swiss Health Insurer Vs. Yasmin

1/9/2013

0 Comments

 
According to Yahoo News, A Swiss health insurer is baking a woman and her family as they sue Bayer, the creator of Yasmin.  Yasmin is one of the third generation birth control pills.  The third generation pills have come under fire for their use of newer progestins that appear to have a much higher risk of blood clots.  In the United States, Bayer has already paid out $750 million to just under 3,500 individuals who feel that they suffered a pulmonary embolism due to the use of Yasmin.

Combined oral contraceptives are a known risk factor for pulmonary embolism.  Individuals who have had a pulmonary embolism and would like to use birth control should speak with their doctor(r) about the options.  More information can also be found by clicking here.
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