June 25, 2014

BCRN Facebook Group Now Available!

When I started this blog just under two years ago, I was not prepared for how much it would grow into what it is today in terms of readers and active community participants. We have readers from all over the world including a vast majority of the United States, Canada, the UK, Australia and New Zealand, just to name a few. The outpouring of support, generosity and willingness to help others through the recovery process from you, the readers, has been nothing short of amazing. I am grateful for the opportunities that have surfaced because of this blog, including the chance to chat with NASCAR’S Brian Vickers about his own recovery from blood clots as well as write some feature articles for a variety of online publications. Without you, none of this would be possible. Thank you. With this growth, I have made the decision to add a BCRN Facebook Group to the list of BCRN resources, with the encouragement from many of you here and the Facebook Page. It is something I have been thinking about for some time and finally decided to roll it out. So, what does that mean for you? Read on to find out!

What’s the difference between a Page and a Group?

Just like your personal Facebook profile, Pages enable organizations, blogs, public figures, etc. to create an authentic and public presence on Facebook. Unlike your profile, Facebook Pages are visible to everyone on the internet by default. You, and every person on Facebook, can connect with these Pages by becoming a fan (or “Liking” it) and then receive page updates in your News Feed. You can also interact through commenting, posting on the wall, messaging and liking (Source).

Facebook Groups are the place for small group communication and for people to share their common interests and express their opinion(s). Groups allow people to come together around a common cause, issue or activity to organize, express objectives, discuss issues, post photos and share related content – such as what you may be going through during the recovery process. Like with Pages, new posts in a group are included in the News Feeds of its members and members can interact and share with one another from the group, including tagging one another (Source). Groups are more private and in the case of the new BCRN Discussion Group, you have to be approved (by me at this time) to join. The Group is CLOSED, meaning anyone can see the Group and who is in it, but only members can see what is posted in it, which is important when discussing personal recovery situations. It is important to keep in mind, with Pages, Groups and Profiles, this is the World Wide Web and user discretion should be exercised when posting about medical issues in a public manner.

But, I love the Facebook Page and it’s information.

Don’t worry, the BCRN Facebook Page is not going anywhere! It was created with the specific purpose of being a public Page to help promote awareness to the public about blood clots and their often devastating effects. Regular posting will still occur there with the goal of raising awareness. Reader Writes In will still be in effect, however, some of the more sensitive medical issues may be redirected to the Group in an effort to protect privacy as much as possible. By all means, if you have something positive, negative, encouraging or educational to share/ask, please continue to do so on the Page! It is all in the effort of raising awareness.

Why have both a Page and a Group?

Together, Pages and Groups bring even more ways for you to stay connected to Blood Clot Recovery Network on Facebook. With the Page, you can stay up to date with day-to-postings as it pertains to awareness, new posts and general recovery, including sharing stories and ideas. In the BCRN Facebook Group, you can connect with a smaller, private circle of individuals who are going through the recovery process just like you.

What took you so long to create a Group?

After blogging for what is now several years, I am a huge proponent of having a Facebook Page to grow readership and in the case of BCRN, spread awareness to the public about blood clots and the recovery associated with a blood clotting incident. That was always one of my main goals in the creation of this site. As I have gauged interest and subjects on the Page and site and also received feedback from fellow readers, now is the time to create a private Group.

Sign me up! How do I join the Group?

Please click here to join the BCRN Discussion Group on Facebook. Your membership will be granted with my approval as an administrator of the Group and will happen ASAP after the initial request.

The Group is an extension of the site and existing Facebook Page to facilitate in what are sometimes sensitive and private discussions relating to blood clots and recovery. It is a Closed Group, meaning ANYONE can see see the members and who is in it, but ONLY MEMBERS can see posts. Please be conscious and caring in your posting and commenting. Bullying, degrading, spamming or disrespect will not be tolerated.

It is also important to note, the postings and comments in the Group are not intended to be and should not be substituted for professional medical advice. If the reader or any other person has a medical concern, he or she should consult with an appropriately-licensed physician or or healthcare provider.

If the reader is concerned that he or she is experiencing a DVT or PE, he or she should seek immediate medical attention. PE’s can be life-threatening and require immediate emergency medical attention. Please do not dis­re­gard or delay seeking professional medical advice from a licensed professional because of something read in the Group or any linked materials.

I want to stay on the Page, is that okay?

Of course! You do not have to join the Group if you don’t want to. Or, you can join the Group, but not be a fan of the Page. Or, you can do both or neither! Whatever works for you at this point in your recovery, is the best option for you.

Reader Writes In. What do you think about adding a BCRN Discussion Group on Facebook? Do you think it will be beneficial or not? Do you plan to join? What do you like best about the BCRN Facebook Page?

There is hope for healing and you are not alone,

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June 4, 2014

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!

 

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November 6, 2013

A Survivor Speaks: Surviving a Silent Killer….The Whole Story by Lisa

Lisa Cover

A Survivor Speaks: Surviving a Silent Killer….The Whole Story by Lisa Cowan Wells

I always thought of myself as a Mom, Wife, Friend who wore many capes…I was always on the go, shuffling oldest to high school and job.  Then taking both kids everywhere with me while doing errands for myself, house, school, our brewery and night school for me at the end of the day.  I always lived in fast mode…you would think under those circumstances I could be at least a spokesperson for being able to take on anything!

At the end of last year, 2012, I noticed I started having more health issues than my usual, occasional bronchitis, sinusitis, and asthma episodes.  These continued into this New Year, 2013.  I went to the ER countless times so sick and all they did was say it’s your asthma…here is some prednisone, Z-Pak and pain pills for chest pain.  D-dimer was always coming up negative, so they never pushed further to check for clots since my leg was not giving any signs or signals for a DVT and chest just seem to be asthma related issues.  I noticed that every time they were giving me those meds, the usual ones that always worked when it was bronchitis, asthma related issues weren’t working anymore and the pain in my chest, dizziness, palpitations were getting worse…at this point when I would show up at the ER…I just had to be in search of pain meds, I must be addicted.  The last ER visit I had before the BIG ER visit…he sent me home with the same meds again and said I had pleurisy.  They did a D-dimer each time and again, always negative…this ER visit they even did a CT scan without contrast and said there was nothing.  I began to think I was crazy or something…got really scared.

I was in my kitchen this past April and my daughter gave me something to cut open…instead of using the scissors, I used a small, very sharp knife…dumb, dumb, dumb BUT so glad I did because it was from that cut that got the ball rolling on finding this DVT, multiple bilateral pulmonary embolisms I had.  The knife went in deep on the side of my finger…told some friends on Facebook about and they urged me to go to the ER just to be on the safe side to make sure it didn’t get infected…..so, embarrassingly I did.  When I got there they took my BP and it was 179/145…they were freaking out and the thumb became last priority…my pulse was racing at 137.  They walked me back and did and EKG, D-dimer and some tests while they cleaned and bandaged my finger.  They I was informed to get a doctor right away about this blood pressure issue because it was serious.

The next day I did.  Blood pressure still was high, not feeling well in my chest.  He thought go ahead with another round of steroids and be rechecked on the blood pressure after two weeks.  I went in again, this time with tingling sensations (described like a hyperventilation feeling) on my left side from neck, chest, arm, leg and foot. He seemed puzzled. I went home, a few days later could not get off the couch, had a raging headache and still had the same symptoms but this time it was worse and could barely move.  I called the doctor and he suggested I go the ER. The ER checked all those things again.  Asked me if I would like to just go home and see what tomorrow brings or be observed overnight.  I chose to be observed overnight because I knew something was not right.  They kept saying I was just having muscle spasms causing the pain on my left side and was going to release me the next day.  A new doctor came to see me before they made final decision to let me go…we talked, she seemed very concerned and ordered a CT with contrast to check for clots even though the d-dimer was still negative.  Low and behold…nurses started rushing in, hooking me up to things just as I was about to tell my mom I was going home.  I put the phone down and asked him what was going on…he said you have clots in your lungs….WHAT! Me?  Not me…Super Mom.  What is going on…I was so confused and this was so foreign to me.  All kinds of emotions flooded through my brain…I cried, was terrified, confused…everything.

The next day the nurse asked if I would like to take a shower…I said yes.  When I was in there I got this Charley horse sensation and pull in my left leg.  It was very odd.  I debated whether or not to say anything.  Good thing I did.  She ordered a scan of my leg and there it was…a monster of a clot…18 inches!!!!!  There was the culprit that caused the embolisms.

Next day, I had labs…..and about 20 vials of blood were drawn.  All came back negative.

I finally went to a hematologist that did testing that was done and found what it was….I had the MTHFR C677T and the Prothrombin G20210A mutations (heterozygous and homozygous).  What all this means to me right now is that I am a lifer on blood thinners (Warfarin).  I see a genetic counselor on September 5th so this will help me understand…I do know I have to get my daughters tested for sure.

Well there you have the whole story.  I am still Super Mom but in a different and more special way now.  I see the world and my own life differently after coming so close to death.  Thank you all who were by my side from the beginning…my husband, children, family, friend and the friends I have made here that gave me my voice back to make a difference and spread awareness.  Here I am and here is where I want to be!

To connect with Lisa:

Or, you can comment below.

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July 3, 2013

Facebook is killing us

facebook is killing us

Facebook is killing us. What was originally created to be a convenient method for people to stay in touch with family and friends [without actually having to talk to them] has, in many respects, taken a drastic turn for concern and is actually becoming a detriment to our society.  Not only is it troubling that younger generations in particular may develop a misleading perception of what real human communication is, but our physical health is sure to be scathed by long hours spent in front of the computer (or TV or game console) without any pause for exercise or relief. Our minds are pushed to the limit, bombarded by distraction after distraction and even when we are sleeping, we often find it difficult to rest.  In the United States alone, obesity and diabetes – and deaths as a result of heart attack and stroke – are on the rise now more than ever and I believe it is in part due to our inactive lifestyle and inability to unplug. We won’t do it, we can’t do it. We are addicted to the constant flood of information inundating our news feed by the second.

logout of fb

But, even more than all of these things, Facebook in particular is dangerous to our health because we do use it as a primary source of communication. And like the all-knowing, all-seeing, all-believing Google, we usually turn to the internet for help before anywhere else. You know what I am talking about – how many times have you turned to Facebook for a cure to the common cold, advice on how to treat a sprained ankle or thoughts as to what ailment may be plaguing you? I see it all the time and I am guilty of it myself. So many times I see someone posting a question on Facebook – that I then find myself answering – when I am really thinking, “You probably need to see a doctor.”

So, why don’t we [see a doctor]? Facebook is free, it’s quick and it’s the surest way to get attention when you’re feeling bad and need it the most, right? There has come a time when we all need a little encouragement from a friend or family member saying, “Hang in there, that happened to me and I’m fine” or “I’m so sorry you’re feeling that way.” (Remember, we can’t pick up the phone and call)

What I find disturbing is when Facebook and the vast array of online resources becomes our only means of communication with the outside world. When we base our health on what Facebook says when we should be calling 9-1-1 is not okay, for anyone and it is in fact, why Facebook is killing us. For example, I am a member of many online support groups (and there is nothing wrong with a good support group by any means) and it is bewildering to me that so many people who have previously experienced a DVT or PE turn to the support groups for answers before contacting their doctors. This is compounded by the frequent posts beginning with things like “I NEED HELP, SOMETHING IS WRONG” and the person goes on to describe swelling, tenderness and trouble standing or walking on their legs. To my knowledge, Facebook cannot yet dial 9-1-1. When faced with a PE, death can occur within moments of symptoms and there is no time to waste on Facebook.

facebook dislike

It bothers me particularly in regards to these groups because I feel like one should know better. There, I said it. When I experienced my DVT and PE, I had no idea what was happening to me. I did not know the signs and symptoms of blood clots and I didn’t check Facebook to see if I should be concerned – I just wasn’t. I called my Dad who called the doctor who called me and ordered me to the ER – almost too late by my own accord, I might add (even without the help of Facebook).

My point in writing this is that if you are experiencing signs or symptoms of a DVT or PE, or even if you just don’t feel good, please contact your doctor before anything else like consulting Facebook. And if your doctor can’t see you, please don’t hesitate to go to the ER or Urgent Care. We have all been given a second chance at life and it concerns me that so many of us continue to play with fire. I know no one wants to go back to the hospital – myself included – but if I ever experience something like I did the night of my PE, you will find me there in a heartbeat, full knowing that it could be my last.

All of this said I do think it is also helpful to be a part of online support groups and there is nothing wrong with going in and posting your experiences or asking questions after the crisis is over. I don’t even think I am opposed to a back-of-the-ambulance post (which, yes, I have seen) as long as you are taking care of yourself first and foremost. But, please, don’t wait to get to the doctor.

I have found some wonderfully supportive, intelligent, helpful, encouraging support groups through Facebook (which you can see HERE) – just don’t let me find you there when your life may very well depend on it.

find-us-on-facebook

 

Share your story. Do you or have you turned to Facebook for help before calling your doctor? Does it concern you when others do so or do you notice? Do you think Facebook is killing us?

There is hope for healing and you are not alone,

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