A PERSONAL STORY TO SHARE

An Honest Reveal Of My Journey With DVT

Usually my newsletter is geared towards personal or professional development, but this month I chose to write about health, and while it may be seem to be a bit of a departure from my "normal" writings here, it is still a part of the whole--of holistic consciousness and life balance—and is knowledge that really can make a difference. Some of my readers may have heard snippets of this news, from me or in my blog, but today I share this story, in its entirety and with the newest updates, with my global newsletter audience. I hope that by doing so, more people will become aware of DVT, understand what it feels like to go through the process, and share the facts with others. By spreading the word, we can all help to educate and ultimately to save lives.

On June 20th, I was diagnosed with a condition called DVT. You might be thinking, "What the heck is DVT?" I know I did! I had no clue, and certainly did not know that it is a serious condition that kills more people in America than Breast Cancer and AIDS--combined. A scary fact. So I figured that if I had no idea, then you might not know about it either.

Here's what happened:
One morning in early June, I woke up with a pain in the back of my lower right leg (calf). It felt like a cramp or the tail-end of a "charley horse"... tender to the touch, achy, and difficult to walk on at times. I wrote it off to a pulled muscle, although I thought, "Wow--I must have had some kind of dream to pull a muscle in my sleep!"

Some days my leg felt better than others, and at one point it felt as though the pain was working itself down my leg, so I somehow assumed that it was working itself down and out. So I left it... for two weeks! I don't know what I was thinking. (This mistake could have potentially cost me my life.) However, that being said, most people might have assumed the same thing. Even my husband admits that he would not have gone to the doctor for that type of pain, and would have assumed it was nothing.

The only reason that I went to the doctor at all one Friday afternoon, was because I was due to board a plane very early Monday morning, to fly across the country with my husband, and thought I should perhaps just mention it before I go, just to make sure I shouldn't be doing something specific to help it. I was having a harder time getting up and down my stairs at home, and the ache was so constant and unnerving. Even still, I honestly figured that I was being a bit of a hypochondriac, and that my doctor would give me a proverbial pat on the head and tell me just to put ice on it.

My regular doctor wasn't in and I saw a substitute who, after looking at my leg, determined that given the symptoms and that it was slightly swollen (which, in all honesty, I could not see), that I most likely had DVT. He looked extremely serious and told me that I would most likely not be flying on Monday morning, and that I was to immediately drive myself directly to the emergency room of my local hospital. (My GP is in a different city, one hour from where I live--due to a move awhile back.) He said that, in my case, oral contraceptives (which I had to quit immediately), in combination with other contributing and exasperating factors, were most likely the cause. (But there are many factors, affecting many people. See "DVT Facts" below for details.) I asked what DVT was and he said that the hospital would have to check for a clot. At that point, I still didn't understand, and thought they were looking for a clot or DVT (whatever that was). From the urgent and serious tone of the conversation though, I was a little shocked. I remember saying something like, "Well, I can't just show up to the ER and say, ‘Hey I need a test', can I? I mean I look fine!" He said, no, no... that he would give me a note, and quickly scribbled it out on a prescription pad.

Believe it or not, I didn't know exactly where my local hospital even was specifically. Even though we moved to our location over three years ago, we had never needed to visit it and certainly never contemplated having to visit it. In my state of bewilderment, and with my husband away, I called my friend to look up the address and location on the Internet for me. The doctor was clear... go directly there... now. I later learned that DVT (Deep Vein Thrombosis) is a clot, usually in the legs (in a deep muscle vein, not the superficial veins we can see), and if it breaks loose (becomes an embolism) it can travel to the lungs, and can potentially cause a fatal PE (Pulmonary Embolism)...hence the urgency.

After arriving at the ER, they rushed me past everyone who was waiting... past all the people on stretchers just out of the ambulances, past broken, sick, bleeding, and crying people... into what they call the "Fast Track" in triage. That in itself was disconcerting to say the least. After the preliminary diagnosis and bloodwork, they gave me a Heparin injection (which is an anti-coagulant, or commonly--and actually inaccurately--called "blood thinners") into my belly. That was to stabilize the situation and hopefully prevent an embolism. Then, after several hours, I was able to go home, but was instructed to return first thing the next morning for a Doppler ultrasound on my leg. I was given all the possible symptoms to watch and call 911 for. (It ended up being a restless night to say the least.)

That evening at home, with my phone now glued to my side at all times, I tried to educate myself on what this thing was that I potentially had. I tried to understand. But what I read on the web only fueled my fire of fear, so I tried to put it out of my mind, because I thought that I had a chance of the test coming out as negative. Why read something that might not pertain to me to begin with?

At 5:00 a.m. I woke up out of bed and couldn't sleep. I tried to eat some cereal, but just broke down standing at the kitchen counter and cried. (I had yet two more meltdowns that week.) All of a sudden I felt alone and scared. If you know me, then you'll know this isn't typical behavior! Where was the optimistic and enthusiastic person that I strived to be?

The next morning in the hospital, after five hours of procedure, testing, and waiting, the results were positive and I was indeed officially diagnosed with DVT. I had a blood clot going all the way from my knee to my ankle. (I thought, "How on earth can that be?" First of all, I always thought that clots were little round things, but after viewing DVT clots on the Internet, I have seen that they can fill the veins like spaghetti. Yuck--you really don't want to see that.)

My husband was out of town for my adventure, and I called him from the ER, shocked, tears rolling, and scared. (Meltdown #2). It's amazing that no matter how many years I have practiced and taught personal development, that I hold spiritual beliefs and feel I try to be a woman of faith, and that my father has instilled in me the power of positive thinking, at that moment it all flew out the window, while I needed to sit with, and not deny, the feeling I had in that moment... fear. I was fearful of an embolism, but more accurately, I was afraid to die... plain and simple. How ridiculous it seemed, I mean I wasn't sick. I know people who have, or are battling with difficult and debilitating life-threatening illnesses, with far more reason to feel this way. Yet, there is something so frightening, unsettling, and sobering about the possibility of something attacking so suddenly, with such stealth, and with absolutely no warning... any time, anywhere.

Back at the ranch, I was instructed to stop my birth control pills immediately. (I groaned in my mind, as I had just finished buying a fresh supply.) I felt like a teenager again, in that I'd have to talk to my docter about "options", which, considering I was no longer allowed estrogen or hormones were a little limited. I was wondering, "How will stopping estrogen after 20+ years affect my body and my hormonal balance?" (Thankfully, all is currently well in that department. Okay--other than the meltdowns.)

Starting that day, and for the week to follow, I was an outpatient "in treatment". This meant that in addition to keeping my lovely hospital wristband on all week, every day I had to return to spend the majority of my day in the hospital for my vitals to be taken, symptoms to be monitored, any tests to be taken, the shot to be given in my belly, and blood to be drawn. I also shopped for a medical bracelet, which I tried to view as adding new jewelry to my collection. Oh yes--and during the week I had another brief meltdown (that would be the last--#3)!

Why all the blood tests? Well, they provide what's called an INR reading, which basically rates the coagulation time. They were done early in the morning, so that by the time I returned home in the afternoon, the hospital could call me with my daily/dinnertime, precise dosage of Warfarin--also known as Coumadin (the pill form of anti-coagulant. The goal INR reading for me is 2-3. A "normal" reading (for someone not on anti-coagulants) is 1.0. So the goal is to get it in range, but not too high due to potential internal bleeding. It's been up and down since I began, going from 3.6, down to 1.7, and all around like a yo-yo! At the time of this writing, I am 2.9 and hoping I stay there for a while!

During the course of my time in the DVT Outpatient Program, I did a few various tests, a Pulmonary Function Test (which I did well at), a CT Head Scan (to check for emboli in the brain—yikes) which was all clear (thank goodness), and a CT Angiogram (due to a little chest pain I had during the week), where I was injected with dye so they could examine my lungs closely. Upon immediate inspection it looked okay, with only a scar they could initially see. All good.

About two weeks later I had a follow-up ultrasound on my leg to see if my clot had advanced at all into my upper leg, which would have increased my risk for embolism although, being on medication, the odds of it happening, at that stage of the game, were rare I think.

After another week--so almost two weeks past the original test, my GP received the angiogram from the hospital, which I suppose underwent thorough scrutiny, and it was discovered that I did indeed have a pulmonary embolism after all. Lucky for me, (gee, it still seems a bit like Russian Roulette doesn't it?), it was small and managed to end up in my lower lung...in other words, safety.

Also, the 1 cm scar/node that was originally found in my lungs, was believed to indicate (along with what they feel was previously misdiagnosed leg swelling/pain from 2006) that I most likely had DVT and PE once before and, luckily, healed myself... although it obviously was back.

It was also revealed, from the second follow-up ultrasound's comparison with the first, that the first ultrasound actually did indicate that my clot did originally include growing above my knee, something they were hoping didn't happen. But it had most likely happened before I went to the hospital. The good news was that the second ultrasound showed that the part above my knee had dissolved. Miraculously quick! Now, just have to work on healing the rest of my leg!

After I was "out of the woods", as they told me, my appointments were reduced from daily, to only twice a week (once for bloodwork and once to visist my GP, with other medical appointments scattered in between), and no more belly shots! Woohoo! And now, as of this week, reduced to weekly bloodwork, but only having to see my GP every three weeks. With great anticipation, that will again reduce to monthly, and then maybe even to ever other month. The entire treatment will last six months, at which time I will have another ultrasound to see if my clot has dissolved or if it is still present, and if so, to what extent. (The anti-coagulant medication is to prevent further clotting and embolism, but does not actually dissolve the clot. That happens--usually over a period of months--by the body's own natural abilities. Although, from what I understand, sometimes they will not totally disappear, but instead become grown over by the vessel wall.)

This week I was also custom-fitted for a medical thigh-high compression stocking. (Sexy, no?) Hehe... jokes aside, it's not bad at all! And despite being shown the process and having a trial run with an RN/Fitter, I'm still figuring out how to get it on without a battle. (One would think it to be a heck of a lot easier than it is! I know I did!) Luckily, other than initial and very minor swelling, I've not been swelling any more with DVT, unlike many, so the stocking will help me just with any aches or pains, and help the circulation of blood flow from my veins back to my heart, (rather than pooling up in my leg).

All in all, my physical journey is going well. I'm feeling good, I walk more, keep my leg up (when I'm on my butt!), and I continue to work on the positive thoughts that I am already healed and am healthy. Mentally, emotionally, and spiritually, of course I've grown from this, have faith in the process, and work on keeping a positive perspective. I believe that everything happens in the right space and time, for a reason that unfolds as we become open to it. If I can use this event in my life for a purpose, for a service to others, then that's where I'm needed to be.

I was initially so shocked by not having heard of DVT (the symptoms, the facts, or the serious complications), plus the fact that I couldn't locate a national Canadian awareness/support program, that I felt compelled to do something to help raise public awareness and potentially to save lives. So I just started talking to people; people I knew, then the hospital management and administration (I sent a letter of support to the DVT Outpatient program, which is being posted in the hospital staff newsletter, as well as on a wall), the North American Thrombosis Forum (where I'm planning to attend the Thrombosis Summit in September and meet the Patient Advocacy Committee), the National Alliance for Thrombosis and Thrombophilia (U.S.A. I'm hoping to bring their "Stop the Clot" program to Canada), and "survivor" forums (in particular, "Life After DVT"). Now that things are starting to settle down for me, I will start preparing to talk to anyone in the Canadian media who will listen, hoping to bring this cause to newspapers, magazines, and television. I welcome being invited to speak about it, whether to health care providers, patients, or the public. I have a new mission.

FEATURE ARTICLE

DVT Facts

What is our single biggest health hazard? Cancer? Heart disease? Obesity? Toxic chemicals? Actually, it's blood clots. By blocking the circulation to various vital areas of the body, these tiny clumps of congealed blood are a leading cause of death and disability.
From the article "The Blood Clot", by Eva Chandra


What is VTE (Venous Thromboembolism)?

VTE is a term used to describe both related conditions: DVT and PE.

More than 200,000 new cases of VTE occur annually. Of these, 30 percent die within 30 days, one fifth suffer sudden death due to PE, and about 30 percent develop recurrent VTE within 10 years. From the American Heart Association

What is DVT?

DVT (Deep Vein Thrombosis) is a when a blood clot (thrombus) has formed in one or more deep veins, usually in the legs. The blood flow in the vein is partially or completely obstructed. A DVT can extend to fill long lengths of vein.

Where can DVT occur on the body?

DVT usually occurs in the legs, but it can, more rarely, occur in the arms or pelvis. Although, I have met two women in the hospital with even more uncommon sites: one had DVT in her abdomen, and the other in her foot.

Leg vein clots are by far the most common, accounting for more than 95 percent of all clots.
From the book "Thrombosis", by Dr. Jack Hirsh, Canadian Medical Association, 2005

There are two types of veins in the legs: superficial veins (the ones closer to the surface of the skin that we can often see), and deep veins (near the bone and surrounded by muscle), which are the ones affected by DVT.

Blood clots can also form in veins that are closer to the surface of your skin. But these clots — known as superficial venous thrombosis, phlebitis or thrombophlebitis — aren't typically dangerous because clots that form in the veins near the surface of the skin don't travel to your lungs. Mayo Clinic

What is a PE (Pulmonary Embolism)?

PE is a very serious condition and complication of DVT that occurs when a traveling clot (embolus) breaks free from the leg (in this case) and travels up the bloodstream to the lungs, where it lodges. PE is a cause for emergency, as it can be fatal.

Up to 30% of patients of a pulmonary embolism will die within hours if they're not treated. From the article The Blood Clot, by Eva Chandra

Who is at risk?

In Western countries about 1 in 1,000 people develop venous clots every year. This translates into about 5 percent of the population, or 1 in 20 in a lifetime. From the book "Thrombosis", by Dr. Jack Hirsh, Canadian Medical Association, 2005

Virtually anyone can get DVT. Know the risk factors.

Risk factors for DVT can include any of the following:

• Being over the age of 40
• Use of birth control pills or hormone replacement therapy
• Pregnancy and childbirth
• Family history of DVT
• Certain surgical procedures
• Inactivity: not exercising, sitting for long periods of time, immobility, bedrest, etc.
• Some medical conditions, such as: cancer, high blood pressure, cardiovascular disease, and inflammatory disease.
• Pacemakers or venous catheters.

• Smoking
• Long distance travel (especially on planes)
• Inherited clotting conditions
• Being overweight/obesity
• Dehydration
• Fractures
• Severe muscle injuries

The more risk factors you have, the greater your risk.

Adapted from various sources. See Resources section for more information.

How is DVT treated?

Some treatments include:

Medicine:

• Anti-coagulants (also known as "blood thinners") are the most commonly used medicines. They are taken as: a pill, an injection under the skin, or through a needle or tube inserted into a vein (called intravenous, or IV, injection). Warfarin (also known as Coumadin) and Heparin are two common examples. Treatment can last 3-6 months or longer depending on the circumstance.
• Thrombin Inhibitors. For patients who can't take Heparin.
• Thrombolytics. These quickly dissolve a blood clot and are used to treat the ones that cause severe symptoms. However, because they can cause sudden bleeding, they're used only in life-threatening situations.

• Vena Cava Filter. Used when patients can't take blood thinners or if they're taking blood thinners and are still developing blood clots. It prevents pulmonary embolism, however, it doesn't stop new blood clots from forming.
• Surgery. In severe cases.
• Compression Stockings. These medical stockings (typically fitted) are tight at the ankle and become looser as they go up the leg, which creates gentle pressure up the leg. The pressure keeps blood from pooling and clotting. They are typically worn for at least a year after DVT is diagnosed.
• Elevation of legs.

Adapted from the National Heart Lung and Blood Institute website. For more information, see www.nhlbi.nih.gov/

What does treatment do specifically?

The goals of treatment are to stop the clot from getting bigger and from becoming a PE, in addition to decreasing the chance of having another DVT and minimize the possibility of developing PTS (as described below).

As previously mentioned, as far as my own personal situation, my medication (Warfarin) will help to do all of the above, but not to actually dissolve the clot. That will have to be done naturally, by my body's own process, and this could take many months. Sometimes the clot doesn't dissolve completely and instead will be grown over. It will be rechecked in six months to see its progress.

Are there any long-term effects of DVT?

A long-term side effect of DVT is the development of the post-thrombotic syndrome (PTS). About one-third of patients who experience a DVT (a higher percentage if the clot goes into the large veins in the pelvis or abdomen) can develop PTS. This condition can show up as chronic pain, swelling and discoloration of the leg, as well as the development of open sores or ulcers, caused by damage that is done by the clot to valves in the veins. The effects of PTS can be devastating, are long lasting and can lessen one's quality of life. From "Focus on Blood Clots", by the Vascular Disease Foundation.

Ways to prevent VTE

• Stay active. Walking helps with blood circulation and with weight loss.
• Stop smoking.
• Maintain a normal body weight and eat a healthy diet.
• Discuss risks of birth control or hormone replacement therapy with your health care provider.
• If you are hospitalized for any medical or surgical condition, ask the doctor what he or she is planning to do to decrease your risks of DVTs and PEs.
• Find out if there is any family history of VTE or abnormal blood clotting. If so, discuss any tests or steps you should take with your health care provider.
• If you take long airline or auto trips, get up and walk every hour or so, and tighten the calf muscles by flexing your foot and raising on your toes 10-15 times each hour. Additionally, avoid alcohol and drink plenty of fluids.
• Follow your health care provider's instructions to keep any medical conditions under best control.

From "Focus on Blood Clots", by the Vascular Disease Foundation.

PODCAST

This month's audio message:

The Signs and Symptoms of Deep Vein Thrombosis and Pulmonary Embolism

Exclusive access to subscribers only - please subscribe here!

RESOURCES TO RECOMMEND

Here are just some of the many resources I've amassed so far!

APS Foundation of America, Inc. About Deep Vein Thrombosis.
www.apsfa.org/dvtsymptoms.htm

APS Foundation of America, Inc. e-Store. Sells DVT Awareness merchandise, includes products that say, "Someone I love had a DVT".
www.cafepress.com/

BC Health Guide.
Deep Vein Thrombosis. www.bchealthguide.org

DVT Awareness – videos with Melanie Bloom.
Remembering NBC Anchor David Bloom. video.wnbc.com/
On the Today Show with Katie Couric. (This one is a few years old now, but well worth watching.)
video.aol.com/

Info for Your Life. A short Canadian video about DVT and PE. (Takes a minute to load.)
syndication.newsnorthamerica.com

Mayo Clinic.
Re: DVT
www.mayoclinic.com/
Re: PE
www.mayoclinic.com/

National Alliance for Thrombosis and Thrombophilia (NATT) – Stop the Clot.
http://www.stoptheclot.org/

North American Thrombosis Forum (NATF). Includes public policy and patient advocacy. (http://www.natfonline.org/policy_advocacy.php ).
New changes to their website will be unveiled shortly, with patient information, stories (a small snippet of mine will be in there soon), and a forum.
http://www.natfonline.org/

Vascular Disease Foundation.
"Focus on Blood Clots" – full color pamphlet:
vdf.org/pdfs/VDF_FocusOnBloodClots.pdf
Their Spring '08 newsletter was a great one on DVT:
www.vdf.org/pdfs/VDF_KICSpring08.pdf

Venous Disease Coalition
www.venousdiseasecoalition.org/

Additional for VTE (DVT/PE) Patients

APS Foundation of America, Inc. e-Store. Sells DVT Awareness merchandise.
www.cafepress.com/apsfoundation/1130562

ClotCare Online Resource. "Helping others improve lives through anticoagulation".
Information on Various Medicines:
Specific: http://www.clotcare.com/clotcare/search.aspx?by=med
Type: http://www.clotcare.com/clotcare/search.aspx?by=medtype
Various postings for Patients and Caregivers: www.clotcare.com/

Life After DVT Group/Forum. An absolutely invaluable support system and patient education resource! An international forum, however its founder is Canadian and working hard towards the creation of the first non-profit organization for patient advocacy and public awareness education in Canada.
http://lifeafterdvt.forumotion.com/

MedicAlert – Canada.
http://www.medicalert.ca/en/

MSN Group for Survivors of DVT and PE.
http://groups.msn.com/BloodClotSurvivorsDVTPE

PT INR. America's Anticoagulation Resource.
http://www.ptinr.com/

Sigvaris (compression stockings). Patient brochure.
http://www.sigvarisusa.com/(pdf)

The Thrombosis Interest Group of Canada. Patient links.
http://www.tigc.org/

Veins of the Leg. An anatomy illustration.
www.doereport.com/

VeinForum.org. "The site for vein information." Includes a free on-line book, "The Layman's Handbook of Venous Disorders".
http://veinforum.org/index.php?page=handbook-chapters

Yahoo Group for Thrombosis, DVT, and Pulmonary Embolism.

http://health.groups.yahoo.com/group/thrombosis/

BRENDA'S SCHEDULE

With regards to VTE (DVT/PE), I am planning to attend the "NATF Thrombosis Summit 2008: Translational & Clinical Research, Prevention & Education, Public Policy & Advocacy", on September 27th in Boston, MA.

For full details on this and other places where I will be in attendance or speaking, please visit my website to see my current schedule.

ASK BRENDA

If you have a question that relates to personal or professional development (internal, external, or spiritual), speaking, training, my books, the website, or topics you'd like to see covered in upcoming editions, please send me an email.

Some submissions may be chosen to appear in this newsletter!

NEWSLETTER CONTEST

The winner for June is Danielle, and the winner for July is Stella Raj. Congratulations! An email has gone out to you both.

Each month, all new subscribers that month will automatically be entered to WIN either their choice of a personalized, signed copy of Brenda's new large non-fiction book (This Reality is Only An Option) when it's released, or her current pocket book Quick-Tips Guide, "Breathe: How to Keep Your Cool at Work (or anywhere else)". Winners will be announced in the following month's newsletter. All subscribers also receive free podcasts!

NEW additional "Share with a Friend" contest for current subscribers! Refer a friend to subscribe to this newsletter, then after they subscribe, email me at: brenda@brendablackburn.com to let me know that you referred them, with both your email addresses, and one submission each month will be chosen--one pair of friends will BOTH receive a free ebook of "Breathe: How to Keep Your Cool at Work (or anywhere else)" pocket book! A special thank you from me to you!

READER COMMENTS

"Your newsletter is a breath of fresh air!"
Rev. Dr. Michael Likey, International Spiritual-Light Centre, Coquitlam, BC

DISCLAIMER

****PLEASE READ***
Keep in mind that the author is merely a VTE patient, not a medical practitioner, so what is offered in this newsletter is NOT professional medical advice. Please, always seek advice from a qualified health care professional for your own health and safety. This newsletter, the author, administration, or resources herein, do not claim to offer, or replace, qualified medical advice. The author, who shares her personal opinion and research, cannot assume responsibility or liability for your health. However, information shared here may assist in increasing your knowledge of VTE (DVT and PE) and better prepare you to ask your physician about areas of interest.

THANK YOU!

Thank you for reading and listening everyone! Feel free to drop me a line at: brenda@brendablackburn.com. I look forward to your comments! You're my inspiration! 'Till next month...

In This Issue

• A Personal Story To Share

• Feature Article

• Podcast

• Resources to Recommend

• Brenda's Schedule

• Ask Brenda

• Newsletter Contest Winner

• Reader Comments

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