Greetings, Medical Gurus! Looks as though I win the "First Medical Topic Post of 2007" contest.

Here is my medical conundrum:
A 37 y.o., pink type, presented to her physician with pain and swelling of the L knee subsequent to trauma sustained during a trail run. Turns out I tore my ACL and had hamstring auto-graft replacement in March of 2005.

I weighed 190 lbs at 65" short, but my build was strong, stocky, and curvy. People were often shocked to learn of my weight. RHR averaged 55 BPM. I was running anywhere from 15 to 25 miles per week depending on my cross training (weights, swim, elliptical, spinning) schedule. And yes, I took a day off. sometimes 2.

Surgery went well. Then just 2 weeks into recovery, I managed to fracture the tibial plateau. I was assured that the graft was not compromised, but any gains I had made toward weight bearing and ROM would come to a halt as I was ordered off the leg and put in an immobilizing splint.

After a few weeks, it was back to my PT regimen to increase strength and ROM. I gave it all I had. My PT guy was surprised by my determination and drive. (He was also annoyed by my constant, "Can I run yet?" queries.) While follow up exams all indicated that my graft was healing and strengthening, I felt far from being back to my old self.

I experienced chronic swelling, bone pain (deep, lingering ache -- like a bad toothache in my knee), and numbness. My orthopod assured me that all was well -- "you just had surgery...of course your leg is swollen." It was the 2nd week of June.

I went home from my visit feeling every bit the hypochondriac. I vowed to suck it up, but called the doc back and asked if I could get a scrip for the "Pressure Cuff Ice Thingy from Hell". I had used it for the R.I.C.E. stage of my rehab and thought it might help. Doc did not see any harm and figured I was not a candidate for addiction.

I went to PT the next day. My therapist opted to skip the workout and apply ultrasound, ice, and massage. He was concerned about the swelling. While massaging the back of my knee, he said, "Wow, it would really suck if you threw a clot!"

The day after that (now 2 days from my last ortho visit) I KNEW things just weren't right. My leg was getting bigger and was discolored. This time I took measurements. I was stunned and worried. I called the doc and told the rejectionist, "either I have a blood clot or a raging staph infection, but this is not normal healing."

I was diagnosed with a blood clot, put on Lovenox and Coumadin. I was told that the protocol for DVTs was lifelong maintance with coumadin. I refused to accept this, went online, found a DVT study looking for guinea pigs at the NIH and was accepted.

What the doctors at the NIH found:
LEFT LEG: "...the superficial femoral vein is clotted for all practical purposes completely. On several of the pictures in the proximal and mid-superficial femoral vein there is a minimal amount of small flow but for all practical purposes the venous system below the inguinal ligament is clotted. The clot extends to and involves the left popliteal vein as well."

I got a roto-rooter job with Altase catheterization and injection. Fun, fun, fun. My case was considered a success. So I left there with skinny blood, coumadin to last through 6 months, given a follow-up appt, and sent back to live out the rest of my life here in Oregon. (And I do feel that I owe those wonderful people my life.) That was July, 2005.

So, here I am today: 39, 227 not so strong lbs, and looking to get back to my fighting weight. I have been working out, but no "land running" because I'm so heavy it hurts. My leg still swells and still goes numb. Suffice it to say that 2005 was my demise. 2006 was my year to heal. 2007 is my year to rise from the ashes. I hit 40 this year, so running that marathon is more important than ever. It's a goal that had eluded me for the past 10 years. Thing is, I always carry the worry that the clot is still there and growing.

I have gradually built my endurance back up, RHR = 60 BPM, and I can happily chug along for an hour or 2 at 130-135 BPM without feeling winded. On cardio days I hit 150 BPM intervals and I feel great. But at night, I lie awake wondering if maybe I'm tempting fate. Every cough. Every time my leg goes numb or swells after a workout or a walk, I wonder what's lurking in my veins. My "medical staff" all say do what feels good -- just don't overdo it. So, where does that leave me?

Belen,

Thank you for you post. WOW, what an adventure. Two things come to mind, first try to get in touch with one of the docs at NIH that helped you, let them know you intend to train toward running a marathon and ask if there is vascular specialist here in town that is current on the DVT protocol you received. With the MD release to workout at a ‘feel good’ rate having a ‘knowing it’s good’ measurement is important. For safety and peace of mind it is important to have someone assess the veins in the region prior to ramping up. If you are not able to get a confident referral please let me know and I’ll get a few names for you.

Second, there are a couple resources that you may find helpful to focus on body composition change and weight loss: JR Malpass for VO2 testing and Eric Lewis for heart rate based training, they can be reached via www.stressthenrest.com Your RHR at 60 will most likely drop right down again as you continue to condition. Having a VO2 measurement is not a black and white science but, it will guide you into an optimal fat burning range to work out at using non-weight baring activities.

With about 10 weeks before Portland Fit starting, 10-20 pounds of fat mass weight loss is very reasonable. I hope this information is helpful, please let me know how 2007 goes for you.

The early bird does get the worm, you do win the first medical topic of the year award! Prize: 1 hour sports/deep tissue massage at Clearwater with Rachel Radonich, LMT. Just call the office to set it up with her specifically and I’ll let the front desk know it’s on the house when you come in.

Cheers to a great 2007,

Dr. Bryan

Congratulations on winning the prize, Belen.

Thanks go out to Dr. Bryan and staff! You folks at Clearwater are such a great resource and always there to help us out.

Doug

Dr. Bryan,

Yes, an adventure. Believe it or not, what I posted was the pared down version. What can I say, it was cathartic and needed to be bled. Thank you very much for the great advice. I think I will send Dr. Horne a note -- he's likely to shake his head and sigh. We bartered over my ability to ride my motorcycle during/after the study.
"Doc, I swear I'll wear those ugly support hose...even in the shower...if you just let me ride."
I think the deal came down to a medic alert bracelet, a cell phone with emergency contacts programmed in, my lovely support stocking, chaps, all requisite safety equipment, crash bars, and training wheels. Oh, and daylight only while wearing a flourescent vest.

Again, thank you. I will send you progress reports (short ones!).

A prize?! Cool! I can't remember the last time I won something. You guys rock!!!

Warm regards,
Belen

Hi there everyone I am very new to this forum and have to admit quite interested in a few things. Belen I am in the same situation as you and unfortunately don't know what to do. First off where exactly did you have your router procedure done and how are things now. I am 37 and have been active my whole life playing every sport under the sun and mainly till my semi retirement I was playing alot of soccer. Well last June had the reconstructive surgery and of course developed the exact same blood clot as you did in the whole leg. They said it is a life time clot and there is nothing I can do but we all know there has to be something. So please let me know any info regarding your procedure and hopefully I coulc get my life back to normal or close to the way it use to be.

Hi there I too have the same problems with a DVT after surgery and was just wondering if you can give me some names and numbers of who to call to get more info on that procedure you had done. I have the exact type of femoral clot you had and they are telling me that this is for life and so is the warfarin. Any info would be much appreciated.

Belen and hotdog

My user name is Dilighted Victory Trainer - or "DVT" (I couldn't fit the Pulmonary Embolism part in.)

Obviously this is not medical advice and we need to listen to Dr. Bryan and our personal health care providers.

I realize that you two know this, but I just wanted to start out saying that this is a reaching out through the pain, fear, dissapointment and down right scary experience to Belen and hotdog. I thought I was a little "off" to want to get back to the incredible Portland Fit training program and wonderful trails we have here in Portland, OR after being told I would be on oxygen 24 hours a day after being admitted to the hospital, throgh the ER, and now in a bed with oxygen and a heart rate moniter. After completing the Portland Fit training Program and the Portland Marathon at least 7 years in a row, here I am not able to walk from my hospital bed to the bathroom without a nurse accompanying me. (They told me not to talk on the phone becasuse I was using too much oxygen and I had to keep that oxygen tube in my nose while I ate.....) Yhis was in March 2007. When I saw Belen and hotdog's postings - wow - I see there are other people in Portland fit experiencing a blood clot - which I thought it was just me! I am not on oxygen or in a wheel chair..........., more of my story follows.

I DO HAVE QUESTIONS FOR DR. BRYAN:

Us blood clot survivors - is it extra important for us to stay hydrated at all times? (especially when exercising?) Are we more likely to get a blood clot if we are dehydrated?

Do we need to not sit for long periods of time? Driving or working at a desk....should we get up and walk around a lot? How much?

What about flying in air planes? How do we handle sitting in a cramped space? Is our blood "pooling" in our legs and more likely to clot while sitting down?

Why does pulmonary embolism mess up your lungs so much and do they ever get back to 100 percent?
Dioes my extra weight (fat) increase chances of another blood clot....?


I am a female with a lot of Portland fit T-shirts, Helvatia Half T-shirts, and Portland Marathon Finisher T-shirts in my closets.
I was at home and decided to walk accross the street and mail a letter, I walked back up my stairs and passed out. What I did next was really really stupid.....I went to work the next day and called and scheduled a doctor appointment for the next day. I SHOULD HAVE CALLED AN AMBULANCE AFTER PASSING OUT AFTER MAILING THE LETTER. I went to my doctor appointment, where he did some tests and told me to go to ER. I went to ER - on a Tuesday I went to the hospital where they confirmed I had pulmonary embolism.......I still have a blood clot in my left leg which my doctor told me is covered by the wall of the vein (encased in the wall of the vein) NOW - at the time litttle pieces of the clot had broken off, got caught in my lungs.....my oxygen was 80 percent. Statistics show that about 10 percent of people die within 30 minutes of having symptoms......I had my symptoms from around December to March 2007. I was hospitalized two weeks before Portland Fit started...Dec - March 2007..I had to stop a lot while ttying to do my puttering around the neighborhood route....PLEASE ALWAYS WEAR ID AND EMERGENCY CONTACT INFO AND DON'T WAIT TO GET MEDICAL ADVICE. For four months I had a 10 percent chance of dying.......good thing someone didn't have to find me dead on the side of the road - yuck. I do not put this in to be offensive - just to remind people how important it is to LISTEN TO COACHES AND MEDICAL PERSONNEL!!!

Anyway - the first doctor said I'd have to be on oxygen 24 hours a day when I got out of the hospital as my oxygen was only 80 percent -

This was on a Tuesday - they kept me until Sunday and I was released without oxygen. I still had trouble getting up my front steps for the next several weeks. I think this is a lot harder for people like me, Belen and hotdog who are used to being physically active and as Belen says - strong. After finishing the Portland Marathon for several years in a row....not being able to get up my steps! I was on Lovenox and also on Coumadin for 6 months.......I'm sure Belen can relate to getting one little cold sore and having it bleed and bleed and bleed......
This all started March 2007. I wish I would have seen Belen's posting......I had signed up for Portland Fit before this had happened....I asked three docotrs at the hospital and my doctor and they all said I could go to Portland Fit.....just do not fall down (I would bleed a lot)....

Along with listening to the doctors and coaches -

Belen said the PT guy was "surprised by my determination and drive..... "annoyed by my constant "can I run yet?." I think DVT is an entirely different experience for physically active people who like to feel strong.....it is awful for everyone of course but it is hard to feel strong and be able to keep up and have that gone....

I could not do the Portland Marathon in 2007 - but I did go to Portland Fit. Usually able to keep up really well with my group members......you know those dreams when you can not move......the entire grouop took off and I was left way back in the dust.....wow - that was humbling. I began to wonder if I should keep going - I would feel good for maybe five minutes during our courses once every 6 weeks or so and at that exact moment someone would ask "are you ok?". The coaches and other members asked me if I was OK very often......I really appreciate their kindness....I explained my heart rate and heart were fine - my lungs were the problem. Muy docotor told me I would not be able to do the marathon training, I would just be able to do what "normal people do" . Then in 2007 the Portland Fit shirts said "ordinary people doing extraordinary things". My doctor was giving me good medical advice, but marathon training is for ordinary people.
I REALLY APPRECIATE THE PORTLAND FIT MEMBERS AND COACHES WHO LOOKED AFTER ME IN 2007.
I went to Portland Fit the entire season.....but I was so so so slow.....I did not get lost! Watching my entire group go up the street very quickly while I struggled to put one foot in front of the other......watching them disappear in a flash up the street when just 6 months before I could keep up with them......NEED A DVT SUPPORT SYSTEM HERE. MAYBE BELEN, HOTDOG AND ME CAN WEAR OUR SUUPPORT HOSE ON OUR CAMEL BACKS. I WILL WAVE MY HELLO! I warned some people in my color group that if I was even able to attend I would be really slow.....they were still SHOCKED to see be struggling.......now they use ME as their "break" and talk to me - I can see the expression on their faces as they urn to take off and go faster......but it is neat having them stop and talk to me even though it took a bit of getting used to on my part. I wish them well as they take off down the path ...........and enjoy their "break". (STOPpiNG TO WALK AND TALK TO ME AS I STRUGGLE....)

I did: LEARN GRATITUDE FOR NOT BEING IN A WHEEL CHAIR, ON OXYGEN, AND MORE COMPASSION FOR THOSE IN WHEEL CHAIRS ON OXYGEN. I did: LEARN TO BE APPRECIATIVE TO BE WITH A GROUP LIKE PORTLAND FIT WALKING THROUGH THE TRAILS IN THE MORNINGS.......I did: LEARN THEIR ARE PEOPLE GIVING ME UNCONDITIONAL LOVE AND WHAT A WONDERFUL THING IT IS. I did: become less concerned about my times (obviously).

It is a gift to be able to stop during our Portland Fit route (at a safe place where i am not in anyone.s way) and feel alive - take in the river visually and talk to people. There are even a lot of art places in Nortwest Portland....I am so much slower now that some of them are open by the time I'm getting back to CNF and I have gone in and talked to artists...and seen thier work...... before my DVT I would not have stopped and enjoyed the river, people, and art.

2008 I did the Portland Marathon - I walked most of it and my pace is really really really slow when I'm doing something a little different then walking.........I got done before they closed the course and that shirt and medal are wonderful.....

It felt great to cross that finish line even if I was really slow and a lot of people were passing me!

I realize that Belen and hotdog have had a different expericne then me.....DVT due to surgery.....how is your leg doing? Howis your left leg femoral vein? That is really sad your leg gets numb and swells. I was told my blood clot is still in my vein....but coverd up by the walls of the vein .... and my lungs are messed up. hotdog - how are you doing? It is Freaky thinking the blood clot is still there.....

BELEN AND HOTDOG - THANK YOU FOR SHARING YOUR EXPERIENCES. This is about two years to the date - March 2007 - when I was hospitalized for my blood clost and pulmonary embolisms (more than one chuck of blood in my lungs from the clot) - so I appreciate your painful messages. Sending love and sunshine.......and good wishes for as much recovery as possible......
THANK YOU DR. BRYAN ALSO!!!!!

Belen and hotdog have had Deep Vein Thrombosis. Having the Deep Vein Thrombosis and Pulmonary Embolsim experience after several successful seasons with Portland Fit has been my situation. Now after Deep Vein Thrombosis and Pulmonary Embolism - after passing out and having symptoms for 4 months before medical attention and warfarin and Lovenox- hospitalization where I was told I'd be on oxygen 24 hours a day and not being able to go from the hospital bed to the bathroom without a nurse watching incase I passed out because my oxygen is only 80 percent with an oxygen tube up my nose - NOW I AM DOING PORTLAND FIT AGAIN WITH MUCH REDUCED CAPACITY IN MY LUNGS AND I HAVE TO GO SLOW, SLOW, SLOW AND MY LUNGS HURT. I was wondering how Belen and hotdog are doing - do you ever read posts about this? ANYONE ELSE OUT THERE HAVE THE DEEP VEIN THROMBOSIS EXPERIENCE? I did not even see Belen and hotdog's posts until after my warfarin and Lovenox were done. It would have been nice to have seen them right away but it really helps me to connect with others who have suffered the same frustration of trying to get back into the Portland Fit or other excercise routine. Hey - if anyone elese out there is OVERCOMING THIS EXPERIENCE how are you doing? I have learned to enjoy the beautiful scenery in Portland (since I am so slow I can stop and look at the river and stop and chat to people - no need to stare at my watch!) One thing about the DVT/PE experience is that I stop and enjoy the scenery more..........I did do the Portland Marathon last October....Delighted Vitcory Trainer (DVT)

THIS MESSAGE IS TO ALL YOU WONDERFUL PEOPLE READING THIS POST:
I thought that my first post was lost in cyberspace and would not be posted on the board. When I wrote the second post the first post had not been posted. Perhaps I did not follow the right procedure to get the first one posted. Because I did not think the March writing would be posted I wrote the second post. I apologize for the typos in the first post and for any repeated information in the second post. Also - I thank you for sharing my experiences with me. DVT is scary! Readers - may your health stay top-notch, may you enjoy energetic sunny safe runs with friends, and may you find joy in all the volunteers, coaches, wonderful paths and beauty in Portland, and may we all give and recieve smiles with no blisters. Thank you once again. You are all a great contribution to Portland fit and your smiles and laughter are a vital, non-replaceable life-force. Delighted Victory Trainer.