A Long Winded, Test Results Are In Update About Me.

Things in life happen. They just do.

We may not always understand why at the time, or how we'll get through it - but we always seem to. One day we will each face a day when it is our time to go, and our loved ones will get through that difficult time with love and the support of each other. That's how it works.

When I speak, I choose to speak of uplifting things - fun, life experiencing journey moments that we can grab by the tail and drag around like an old teddy bear. It's what life is about, smattered with milli-moments (short time increments compared to the good....it's my new word. Feel free to use it) of grief, loss, pain and trial. We all know grief and loss - it takes time, and helping others through to the other side of anything is always the greatest gift you can give someone.

When August 18th, 2012 dawned, I had no clue the direction my life was about to turn. It was supposed to be the perfect day - we also know how things can change in the blink of an eye......

It was my wedding day, and I felt incredibly good. I had company from out of town and we woke up to get a good, early start on the preparations. We ate a hearty breakfast with friends and soon after, I felt nauseous. I felt so nauseous, I couldn't stand it.

Food poisoning on the day of my wedding?!! Terrific! I did all of the little home remedy things I could think of to move things along (if you now what I mean) and nothing seemed to work. I felt horrible and went to bed until the ceremony. I had my hair done while lying in bed - and it turned out amazing.

Wedding Hair - had to show it off!

So, long story short - I made the ceremony, got hitched, and slept through the reception. I not only felt bad physically, I felt bad for missing all of the fun with so many wonderful people. I'm all about fun!

After lying in bed for a week, my right leg swelled up to three times the size.....it hurt so badly that I couldn't touch it. A lump on my throat had developed and it was so sore no one could get near me and I couldn't turn my head in any direction. I had no clue what was going on, but my family was determined to get me to a doctor - and they did. I was then rushed to a Winnipeg emergency room where I sat for 5 hours waiting for assistance. At this point, I was on so much morphine for pain that I didn't care if I had to sit there forever as long as you didn't ask me to make an effort. I was done.

Then I started coughing up blood. It's amazing how I tried to justify and deny it too - a nurse asked if this was normal for me and I said yes. What!? A tissue filled with bright red blood after I coughed was not normal at all. Thankfully a very concerned hubby was there and straightened it out.

They got me into a room and test after test determined that I had suffered a DVT (deep vein thrombosis) and extensive pulmonary embolism. This means that I had a blood clot in a deep vein (one of the major ones) and some broke free, travelled through my system and into my lung. I was told both lungs, then the right lung and one doctor told me it travelled through my heart - so at this point, I'm still not certain.

They did tell me it started in my upper right thigh and that it was big. I still don't know what to imagine when I try to describe what he said. Is it 'grain of rice' big or is it orange sized big? I had no frame of reference.

I had to now try to figure out how the clot had developed....I was getting used to the idea that there was one.




There were certain things we could say cause blood clots;

Drinking
Smoking
Fast Food/Greasy Diet
Obesity
Stress
Injury
Surgery
Miscarriage
Birth Control Pills (I was asked this repeatedly)

I thought of this long list and realized - no matter what it was, I knew I had been guilty of ALL of those things in the past!

One interesting aspect to this whole thing was that the day I ended up in hospital, I totally lost the use of my right arm. Completely! You know when you make a muscle and you can feel it? I had lost my muscle - it was gone! I held my arm against myself like a damaged bird. It was my writing hand and I spent every night in the hospital imagining using it again, writing, painting, typing on my computer. I threw a baseball in my mind over and over again. I was going to use that arm again - no doubts.

One stipulation to my going home was that I had to inject my tummy every morning with blood thinners.....via a needle. I am anti-prescription, but this one was necessary at the time. No one knew how or why this had happened to me, and the goal was to keep me alive. I was in full favor of that goal! I had to get my blood INR level up between 2.0 and 3.0 to be on the safe side, and I was having trouble getting my level to even get to that 2.0 mark. Initially, I think I was 1.3.

So, after a week in hospital I was heading home. My arm was still useless, but the best healing starts where you feel safe and cozy - and I was there. I wanted nothing more than my family around me and someone holding my hand. I felt very far away from the regular world at this point and I guess I was frightened by how quickly it had come upon us all.

I was simply grateful.

I did nothing at first. I sat on the couch and watched the wall for a long time. I was processing everything that had happened. I was finally hearing nothing but silence. I had heard nothing but noise....from far, far away all week long. It felt like I had been lying in a tube, and everyone was outside of it talking and living. I wanted to rejoin them. I started by forcing myself to get up and get moving. There was a lot of self talk - I laughed out loud sometimes at the way I motivated myself. We do what we can.

Once I started getting mobile, I had to start adjusting my diet. There were so many things you can't have when on blood thinners! I adjusted accordingly, researching with hubby again to determine the best course of action for me. My greatest disappointment came when I realized that anything with Vitamin K needs to be eaten in moderation. Dark green, leafy veggies are the #1 prime candidate for Vitamin K. One early days doctor visit to check my INR resulted in me being told it was very low and asked if I had been eating too many vegetables. I found myself adjusting to yet another whole new world, one I am still finding my way around in.

My arm continued to improve - all this due to my never giving up, carrying around 2 lb weights while walking and doing range of motion exercises at home. I would put the dishes away and 'help' my right arm with the other. I couldn't tie a piece of cloth in a knot - my arm just didn't work that way anymore. I knew I had to stretch what little muscle I had, but the pain I felt when I did it was almost enough to make me give up. I would feel a burning sensation, followed by intense pain and what felt like blood flow into the area. It was excruciating, but each time I could use my arm a tiny bit more and I felt a little bit better.

I never stopped moving forward, and when I started seeing real results, there may have been a few high 5's to myself just because I finally could......

I was told I would need to travel to physiotherapy 2-3 times a week out of town. I screamed through some of it and laughed maniacally through the rest. I was doing this no matter what anybody said I could or couldn't do.

Here's a little experiment: Take your writing hand and place the tip of your pointer finger on a desk or table. Only the tip of your finger - and rest your weight as usual on that fingertip.

Now....lift your fingertip off of the table using the rest of your arm. Easy right?

I couldn't do that. The muscle was literally gone. Well - it is back and better every single day.

My right leg felt like it was 'bubbly' - I couldn't bend it as far as I wanted to or run at all at first. Starting slowly, I walked down the steps of our house. I'd sit on a chair and wait for our daughter's bus every afternoon. I was grateful I could do that. Eventually, I was walking (with the assistance of a cane) slowly up and down the driveway with our dogs, and then down the road - now we're up to anywhere between 6 - 12 km per week.

Time, patience and a lot of love gets us there.

I had some incredible helpers along the way too! I will never forget all of those people who thought to send well wishes, call and let me know they were thinking of me or helping my family get by until I could get back. The positive thoughts worked wonders for me and I am so grateful to everyone (and you all know who you are).

UPDATE:
I had an appointment at Cancer Care Manitoba in October, 2012. I didn't seek it out, I was 'referred' due to my 'situation.'

They wanted to take blood samples and see if they could figure out why the DVT happened. I attended, and waited until the end of February until I determined the results weren't here yet.

In March, the results of my tests came in. After donating almost 30 ml of blood, I was eager to learn what they had discovered.

Sitting in my medical doctor's office, I get the results.

I have what is 'called' a genetic mutation....'Protein S' and 'Protein C' deficiency. Usually, a person has one or the other....I got both.

I dug a little bit deeper.....

Protein S deficiency is a disorder associated with increased risk of venous thrombosis. Protein S, a vitamin K-dependent physiological anticoagulant, acts as a nonenzymatic cofactor to activated protein C in the proteolytic degradation of factor Va and factor VIIIa. Decreased (antigen) levels or impaired function (activity) of protein S leads to decreased degradation of factor Va and factor VIIIa and an increased propensity to venous thrombosis. Protein S circulates in human plasma in two forms: approximately 60 percent is bound to complement component C4b β-chain while the remaining 40 percent is free. Only free protein S has activated protein C cofactor activity.

There are three types of hereditary protein S deficiency:

• Type I - decreased protein S activity: decreased total protein S (=both bound and free protein S) levels AND decreased free protein S levels (quantitative defect)
• Type II - decreased protein S activity: normal free protein S levels AND normal total protein S levels (qualitative defect)
• Type III - decreased protein S activity: decreased free protein S levels AND normal total protein S levels (quantitative defect)

Protein S deficiency can also be acquired due to vitamin K deficiency or treatment with warfarin, systemic sex hormone therapy and pregnancy, liver disease, and certain chronic infections (for example HIV). Vitamin K deficiency or treatment with warfarin generally also impairs the coagulation system itself (factors II, VII, IX and X), and therefore predisposes to bleeding rather than thrombosis. Protein S deficiency is the underlying cause of a small proportion of cases of disseminated intravascular coagulation (DIC), deep venous thrombosis (DVT) and pulmonary embolism (PE).

Let's not forget the added bonus of the Protein C deficiency;

Protein C deficiency is a rare genetic trait that predisposes to thrombotic disease. It was first described in 1981.

**WAIT** 1981?? I was 9 years old already!

The disease belongs to a group of genetic disorders known as thrombophilias. The prevalence of protein C deficiency has been estimated to about 0.2% to 0.5% of the general population. Protein C deficiency is associated with an increased incidence of venous thromboembolism (relative risk 8-10), whereas no association with arterial thrombotic disease has been found.

The main function of protein C is its anticoagulant property as an inhibitor of coagulation factors V and VIII. A deficiency results in a loss of the normal cleaving of Factors Va and VIIIa. There are two main types of protein C mutations that lead to protein C deficiency:^[2]

• Type I: Quantitative defects of protein C (low production or short protein half life)
• Type II: Qualitative defects, in which interaction with other molecules is abnormal. Defects in interaction with thrombomodulin, phospholipids, factors V/VIII and others have been described.

The majority of people with protein C deficiency lack only one of the functioning genes, and are therefore heterozygous. Before 1999, only sixteen cases of homozygous protein C deficiency had been described (two abnormal copies of the gene, leading to absence of functioning protein C in the bloodstream). This may manifest itself as purpura fulminans in the newborn.

There's way more to it than this, but you get the *yawn* idea.

A rare genetic trait. Hereditary - due to both my parents creating the perfect combination of blood thickening behavior in me. I remember hearing, 'genetic mutation.' I joke and tell others that I always knew I was a genetic mutant - now I have proof. For now, I am staying on the blood thinners and working towards the next step of getting off of them.

Once I heard all of the results, I couldn't believe my reaction. I was relieved! I was so relieved I wanted to jump and shout and scream and sing and laugh and cry and all of those things.....but not with my doctor. I wanted out of his office immediately so I could go find a rooftop somewhere and scream at the top of my lungs that I was alive and happy and moving forward in every area of life.

Congenital protein C or S deficiency is an inherited disorder, which means it is passed down through families. Congenital means it is present at birth.

The disorder causes abnormal blood clotting.

About 1 out of every 500 people has one normal gene and one faulty gene for protein C deficiency.
Protein S deficiency occurs in about 1 in 20,000 people.

It's not that my body doesn't make these proteins, they don't make enough to keep my body from clotting. So, basically, my body is always saying, 'Hey! Clot for us, would ya? Our bodies cannot eat anything so that we create more of these proteins, they aren't like chicken or fish proteins - these ones help my body NOT to clot....but they aren't working.

I had heard that I would have to be on prescription blood thinners for life. If I had developed a clot due to one of the many things listed above, they would probably insist. As it turns out, being a genetic mutant gets you some leeway. If I can find a natural way to keep my blood thinner (Vitamin E, cayenne pepper, garlic, onions.....sounds tough so far, doesn't it?) I should be good to go!

Food is medicine. We're working on it.

When others ask why this makes me happy, I have a few things to say.


One - I am still here. We don't know what happens to us after we cross that gap from here to there (many of us assume), and I have some living and loving to do here. I'd like to stay - and grateful that I have been offered such an incredible gift. I know many, many others who left too soon. I am excited to learn when the time comes....just not yet.

Two - I am learning so much more about the most important thing on Earth to me....ME! I can love everyone I want - my friends and my family - but without loving myself too, I get to enjoy none of the other stuff. I have to take care of me.

THREE - You find your way again eventually. Stick with it and get mad if you have to, just get moving.

I have an appointment in June for further blood tests, but working with my doctors they are all aware that sometime very soon we will be looking for the perfect combination to get me off of the thinners. My current dosage is 8.5 mg a day - I'm told this is a high dose, so we'll work from there. Researching tonnes of natural options, I am completely confident that I can be off of them eventually.

Aside from the medical stuff that I barely think about day to day, summer is arriving and I can't wait! There are so many fun things to look forward to. I turn 41 this year, and every year I write myself a letter and read last years. This year's is going to be good!

Every single moment is precious. Love yourself too.
Keep moving forward!