Joining the club...

Hello everyone. Thank you for having this forum. I am new to this situation and am grateful to have a place to talk this out and learn!

Here's a bit about me:

I am a 38 year old female w/ a very active lifestyle. I have been happily married for 17 years and have 2 daughters. I own my own private security company specializing in main events and we are very busy. I LOVE my work, my clients and staff and colleages are amazing and great to work with!!

Before my DVT I was training for my first marathon. I had planned (still hoping) to run the 40th Annual Maui Marathon in Sept 2010 in celebration of my 40th birthday that same month. I was alternating my days at the gym between running and weight training and was there almost daily. (those with perspective... am I KIDDING myself now???)

I am a high raw vegetarian (with the exception of eating salmon). I adopted that lifestyle to control my high blood pressure, and that allowed me to stop all my HBP medications. When I cheat or stray from my way of eating my BP will still spike. HBP is another thing I don't seem to qualify for. I have never been overweight, in fact the opposite. I am 5'5 and 110 lbs, always been small framed. I drink red wine occasionally, but have never been a smoker. I am pretty crunchy... as in all natural everything. Before this mess, it took a major illness or pain to get me to take anything OTC... my opinion is if I don't know what it is, can't pronounce it, and don't know what it is doing it doesn't need to be in my body and I find a natural alternative when possible. Now I am on Coumadin, hydrocodone and Xanax... whoa.

Rather than re-invent the wheel, I just copied and pasted what I put on my blog recently about my DVT introduction, I hope you don't mind me being lazy that way but honestlly, this is all so overwhelming and depressing and frustrating that saying it once is really enough for me right now!

So, here you go...

Whoa... I don't even know where to start. I have thought about blogging my latest detour in my life this past month, but it wasn't until today that I realized that I need to document even the tiniest things, that that the little blessings in life are HUGE steps.

I NEED to look back on this and see progress, and I intend to see just that.

This blog used to be titled "RUNNING on the raw edge."... I changed the first word as I have learned that it isn't about running, it is about LIVING. I AM a runner, an athlete, but am also becoming a me I don't know yet. Right now I am not running at all... they tell me I will no longer be a runner - we'll see. In the meantime though...

A brief timeline since I got too busy 'running' and abandoned this blog...

March 13, 2009 - minor surgery that put me on 'light duty' at the gym for 6 weeks. Recovery from that went well... I took some down time and traveled with some amazing friends and went SKYDIVING in San Marcos, TX which remains to this day probably the most thrilling activity I have ever done - and I look forward to the opportunity to do it again! I still stayed as active as I could and worked out regularly to the limits I was allowed. I am so grateful that I was able to experience that and some quality time w/ amazing friends before all this!

April 20, 2009 - more traveling, came home from a 7 hour drive and injured my back bringing things in. Symptoms the next day resembled sciatica. That week was trips to the chiropractor and symptoms continued to get more concerning. Doc put me on bedrest and told me to go straight to ER with ANY changes. I was unable to walk from that day on for over 3 weeks.

April 25, 2009. That's the day my life really changed. Ironically (and frustrating) it was the EXACT DAY I was allowed off 'light duty' at the gym and had planned on getting back to my hard core training schedule for my marathon. Prior to my surgery in March I was at the gym daily barring extreme circumstances either running or doing weight training with a trainer. Instead of going back to the gym, I was being admitted to the hospital with an acute case of DVT (Deep Vein Thrombosis). My entire left leg was full of blood clots from pelvis to ankle. I spent 5 days in the hospital in a whirlwind of IV's and pain meds and returned home w/ Lovenox injections and a plan of regular visits to the Coumadin clinic for the next 6 months where I get my blood taken and Coumadin levels adjusted to the 'theraputic' range.

May 4, 2009. I received my handicap hanger for my car from the DMV complete w/ a registration with MY name on it. My doc had sent in a form. Looking at it I got angry and frustrated and cried... it felt like the state of Idaho was 'rubbing it in'... it has an expiration of Oct. 29, 2009. I don't intend to need to renew it.

May 11, 2009. After being on bedrest the majority of the time and many setbacks I had been contacted by a surgeon the Friday prior. On Mon, May 11, I had a surgery that removed most of the clots from my knee to pelvis. They found my iliac vein in my pelvis was being crushed by an artery (the surgeon called it MAY-THURNER SYNDROME) and they put a stent in, the surgery was to help prevent the long term damage of PTS (Post Thrombotic Syndrome) and help salvage the long term function of my leg. It was an outpatient surgery that I was AWAKE for ... watch the animation - yes, the wire tickled... and it HURT when they were working on my pelvis and inflating the balloons and putting the stent in.

May 12, 2009. I WALKED into an event planning meeting. The personal victory was worth getting snarked at by my clients and colleages! That day was the first day I had walked in over 3 weeks! Ok... it was more of a gimp than a walk, but I was crutch free!!!

May 14, 2009. GIDDY... had decided to go back to the gym and just sit in the recumbent bike and try to move a little... I HAD LIVED through this, I wanted to feel alive and find me again... except when I got to the gym I found it had closed overnight and had been taken over by a different gym... enter a week of hardball and negotiations trying to recoup money lost... and some discouraging symptoms and setbacks w/ my leg. (extreme pain/swelling etc.)

May 18, 2009. A chat w/ my surgeon was very discouraging. He told me I was crazy to try to work out and return to work so soon, but not harming myself as long as I kept it low impact and avoiding trauma. He told me to let my body tell me my limits but to lose the athelete's attitude of working through the pain, instead to listen to the pain/swelling on when to stop and slow down. He said there is nothing more they can do for me medically but to wait on the Coumadin therapy and hope my body dissolves the rest of the clots (I still have them knee to ankle). We will ultrasound again in another 5 months from now and see my status. He told me that due to permanent damage that I have a different body now, that I might never fully recover from the clots and not to even TRY to run for at least 6 months and not to count on my expectations of running my marathon, that I am no longer a runner. He was the 4th medical person in a week to tell me that. I am holding out on GOD to prove that one to me and then and only then will I accept it. In the meantime, I am shifting gears and taking up swimming for rehab, w/ my doctors blessing. He said that is a great and safe full body workout for me, and that I can also do upper body workouts as I feel able at the gym. PRAISE GOD I have options!!!

Eh Snow, don't worry about copy &paste, it explains the troubles you have been through so far.
Welcome to LADVT, wish I did not have to do this or it would be nice under other circumstances, but you are here and you are another perfect example of the type of person that does not fit the profile that people have in mind when talking of DVT/PE .That is the ones that do know about DVT/PE, you will find out that even some doctors and nurses don't know much about DVT/PE. Welcome to our world of the best looking sick people, you will soon find out what I mean by this if you haven't already yet.(but you don't look sick) We get that a lot...
I read your blog and recognise so many similarities, the thing you have to realise now, is that you and only you can decide what you can't and cannot do anymore.Don't let a doctor push you around into giving life as you know it. Before I got diagnosed with DVT, I was an avid Mountain bike rider, I dreamed of riding, I ate riding, riding was constantly on my mind, my diet... The only reason I gave it up was, that I realised that yes, MTB is an extrem sports and that since I was on anticoags, they did not mixe well together, I took a few spills and yes I've cut myself many times, but if it was not for the fact that I was sometimes 30, 40 miles into the bush how long would it be before I could be found with a bleeding cut.
All this to say "don't let DVT/PE change your life totally".
If you read, through some of the people's stories, you will find that some have never changed anything because of DVT/PE.
If you have ANY questions don't be shy ask away,you will find out that your story sounds exactly like another person's and from that you can find out how they dealt with it...
Sometimes the Dr. are not always right, it has been proven many times...
Once again, welcome to LADVT.

Snow,
Our stories are a lot alike, I had a DVT/PE earlier this year and was diagnosed with May Thurners as well. I am still in the recovery stage, moving back to what I knew as normal a little bit every day. I am in no pain, back to working out on a regular basis, I no longer am limping… My recent victory is that I can fit (rather my left leg can fit) in my new jeans…. There is a great deal of information on MTS on the net. If you have a question please feel free to ask, I may be able to advise you or point in the right direction. Welcome!!

Rob

Eh Rob, just to let you know Snow has found the MTS forum on her own, she joinned this week.

Thank you so much for the nice welcomes Dero and Rob!

I am sorry it took me so long to come back to this... I think I'm well into the depression / anxiety phase right now, but am trusting that this too will pass.

Dero -

what you said about there not being much awareness yet much confusion (I'm paraphrasing - hopefully getting it right) about DVT is what I have found to be true. Last night my 2nd cousin, who just happens to be a local news reporter for our states largest news station and is also picked up on a NW network emailed me saying that when she is able to do health stories again that she would love to tell my story to help raise awareness etc. and wanted to know if I would be up for it. I'll keep you all posted how/if that pans out.

Sorry about you giving up mountain biking... that must have been a really hard thing! I am trying to be ME still... but making adjustments. My husband loves to ride a motorcycle, I am not riding with him right now, nor doing the rafting, trail hiking and running (I can't run again yet but..). Anyway, I am trying to use common sense for the same reasons you described while I am on the Coumadin.

Rob -

Thanks and that is encouraging that you are not in any pain anymore and doing so well! I am still in pain / swelling regularly but am walking much better now, my limping is becoming less and less. I can also fit in my jeans which is a bonus .

I am back to the gym and S.L.O.W.L.Y. getting my strength back. I have been doing some swimming, walking on the treadmill and some biking as well as some upper body weight training. On Mon I start back with my personal trainer who is a pro football player and kicks my rear ... or did anyway. We will modify now and if there is anything good in this I have a good excuse for not having to sprint up and down those blasted stairs like he had me doing before I got sick.

It was 7 weeks today that I got my diagnosis and Mon will be 5 weeks since my surgery when I started walking again. I signed up to WALK a 5K on 6/20. I'd rather be running, but it's a start!

Yeah, I found that MTS forum, I better get over there and say something soon before I get kicked off ...

Thanks again for the welcomes!

Snow, take good care of yourself and not to worry about getting kicked off of here, it simply does NOT happen, YOU need to do some really bad for that to happen here.
Today was my first bike ride since I was diagnosed, OMG, talk about having lots of work to do ... Cardio sucked big time and legs are mush!!!!
But at least I am in the saddle again.
Yes it is true about the lack of awareness even in the medical community itself. Some Dr. are just NOT up to pare about DVT. I have heard some folks get told that they have to STOP eating veggies because it contains vitamin K. What kind of voodoo, back bush, type of Dr would tell his or her patient to STOP eating veggies?????
This is just a small example, the longer you stay in this the more absurdities you hear/see.
The more publicity and PROPER publicity this gets the best it is.
See the "News in the World" https://lifeafterdvt.forumotion.com/news-in-the-world-f28/colorado-woman-runs-for-blood-clot-awareness-t501.htm section here I just posted about this lady from Colorado that is running to raise awareness for DVT, I found the article on NATT (Great site BTW,lots of info.) http://stoptheclot.org/index.htm
Snow, what really helped me (emotionally) was me telling myself that I am a survivor of DVT, many have not made it as far...(RIP) that always took me out of the dumps.
Yes, it's a phase that comes and goes, you simply have to stay busy,by the looks of it, I don't think you have that much free time to think and have a pityparty.
Keep it up and yes that MTS site is great, it has a great membership that can answer specific questions that I can't (except for Rob). The difference in experiencing it first hand.

Thats funny (in a not so funny way) you mentioned the veggie thing... I am a high raw vegetarian and I was told that EXACT THING by the admitting dr. in the ER! Talk about adding drama to drama! I insisted on seeing the nutritionist and thankfully she cleared that up quickly!

Great job for getting on the bike!!! I wish you well!

Thanks for the link..it was in a different language though, German? But I'll poke around and see if I can find an English version.

Thanks and true about the perspective.

Take care!

Where is my head???
http://stoptheclot.org/index.htm
which stands for " National Alliance for Thrombosis and Thrombophilia"

In the USA, they are the #1 patient advocate association.