New survivor

Hi all, I am Annemarie, being diagnosed with DVT, and PE after liver laceration caused by horseriding accident. I was hospitalised 17 days, they could not start with Waferin due to liver laceration as it could cause bleeding. But now 3 weeks after accident I am on Warfarin and INR levels 1.69. This condition is a bit depressing as I am very active person and horseriding is my life and my work as instructor and schooling of young horses. I am at bed rest. I struggle to put weight on my left leg which has the clot in thigh-area but veins also block through out left leg. The leg turns blue if I stand and goes dead after being blue. The PE was diagnosed via VQ scan after severe chest pains. I have so many questions regard this condition and the doctor is always in a hurry it feels I do not get a straight answer. He told me I will not be able to do horseriding for 6 months while I am Warfarin. This leg worries me as it does not get better and I can not walk on it. How long do you think it will take to recover? Should I try to force myself to put pressure on this leg? Any information that can help me speed up my recovery would be welcome.Thanx and God bless

Bonjour Annemarie,

First off, welcome to Life After DVT, as much as I wished you did not need to seek info about DVT, I'm glad you have found us.
(I'm sure you understand my statement)

Ah, another patient from the equestrian world, as much as I understand that riding is your life, you should (if you have not yet) read Sharon's story in the lounge... You will understand why.

As for the " Should I try to force myself to put pressure on this leg?" I would say (from a NON MEDICAL PERSONEL, strictly basing my reccomendations on personal experience as a DVT out patient) You know your body more then anybody else and you should only force it as much as you feel comfortable with it, WITHOUT HURTING YOURSELF You and you alone can be the judge of this.
But I would say, take it easy at first, concentrate on getting yourself on your feet and walking. Walking for us, is THE best recovery excercise.
Forget about "speeding up your recovery".

As for me I was a Mountain Bike Rider(not pro,but I rode with many of them) and my doc told me that she highly reccomends that I do not ride as long as I am on anticoagulants, I was diagnosed last august and still I have not been on my bike.
The reasoning behind this is,
A- Any cut can be fatal to you and by cut I mean open scratch or cut
that bleeds, (riding through blackberry patch?)
B- If you take a fall and bump your head( even while wearing a helmet)
it can cause internal bleeding, worst case scenario, celebral embolism.

I'm not trying to scare you, but these are things that we have to be aware of.
Something to think about...

As for the depression state,( I hate to be captain bringdown) DVT not only affects you physically but phsycologically due to the medicaton. Warfarin has many side effects that varries from person to person, one of them( that many will talk of) is that it does play with your emotions, again you and you only can find out the side effects.
I hope that you can take this as "not written in stone" it does not have to be like this for you, it can be entierly different, lucky you if it is.

If you have more questions, don't be shy ask away, we will be more happy to do so...
It is better that you know what Life After DVT has in store for you, before it happens and like I said, it may not even happen this way for you.

Annemarie--

I'm sorry you will not be able to ride for 6 months. I am happy for you that it is not for life. I am Sharon, who my good friend Dero referred to above--or below, wherever this shows up in relation to his post. I had to sell my horses bcs I am on anticoagulant for life as a result of 2 clotting disorders. As I understand it, 1 disorder is rare, so I am really fortunate to pull down 2 disorders!

You have a very unusual injury. You are like me, no matter what those horses do to us, we can't stop loving them or our fascination with them! I had one break both my arms and bust my knee-cap all at the same time when I was 12 years old and couldn't stay away from them. I started begging for a horse when I was 4 yrs old and we moved from Georgia to Texas. I thought everybody in Texas had a horse. How did your accident happen? Were you kicked by a young horse while training it?

I do not suggest you try to walk a lot on the leg if you are still in the first weeks of your DVT. It will stabilize in your leg by becoming part of the wall of the vessel and your body will beging to dissolve it. Some people recannalize the vessel in a month and others take many months or years, depending upon the size and location of the clot. How big is it? Do you know which vein is clotted?

If your leg is turning blue, you need to be very careful. If it begins to swell very quickly or turns purple and does not lighten up to flesh color when you lay back down, you need to go to the ER right away. Having your clot originate in your abdomen is a bit more dangerous. Am I hearing that correctly that it started around your liver injury or is the clot solely in your leg away from the other injury?

Try to keep your hope. DVT is very discouraging, but you have the best scenario if they are going to let you be free of the anticoagulant in 6 months. Anyone can make it six months. I am 50 years old and when you get to be my age, that goes by in no time. How old are you? Are they testing you for clotting disorders? If they didn't do it befor eyou went on warfarin, they won't until you are off of it. Make sure you get a hematologist.

I hope you don't risk being around the horses while you are on anticoagulant. It is not worth the risk. I say that I hope, bcs it is your choice to do what you will w/ your life, but if you work w/ young horses, you could easily be kicked in the head and killed.

I was arguing w/ the anesthesiologist that I had a perfect horse that never bucked, she had no quirks, perfect ground manners, never kicked, I never fell off of her and if I did, she wasn't that tall and I probably wou;dn't be hurt anyway, blah, blah, blah..... While I was saying all this, the nurse flipped the back of my hand to get a vein for the IV. The veins in the back of my hand exploded under my skin before she even stuck me! The anesthsiologist said to me, "Now do you really want to have this perfect horse accidently step on you (which she had before) or run into you in the trailer and slam your head against the bar or something? (I rememebred when Dreams slipped and fell in the trailer and when a friend's horse leaped over my trailer ramp and barely missed my face w/ his front hooves!) I said to her, "Well doesn't God just have the perfect sense of humor to have this happen to prove your point while I'm arguing w/ you about riding?" Try to be encouraged that you can ride again in the future and don't focus on what you have to give up or on your fears. Learn what you have to in order to recover, but don't let yourself be overcome w/ fear or anxiety. Take care--sb

Bonjour u 2
Thanx for your speedy reply: not what I wanted to hear....but I also did not like what the doctors told me, I also had the same argument as you Sharon, but this kind of accident only happend after 25 years of riding.....not likely to happen in next 25...doctor did not buy that. Think I am in denial right now.

Today better, yesterday bad, very furstrated, the mind want to but leg said no!!!Had chest pains again...it feels like having a gun point at your lungs not knowing when the trigger will go off, I never know when I start the chest pains, if this is it now escpecially with the already diagnosed PE. Then I wonder how it will feel to die, will it hurt? It made me realise, that I do not have my life in my own hands, maybe a lesson God wants me to learn? Especially I am such a control freak, and when doing endurance rides and 100 milers with my horse, I block out the pain, don't feel tired and determined to finish - no matter what....you must know the feeling with mountain bike -marathons Dero? But this I can't control, I have no control, quess I should be lucky to be alive???But for me what is life without horses??. Sharon I can not even imagine how hard it must have been for you to give up your horses. I forbid myself to think that it could happen to me...which there is change I suppose. I had sever pre-eclampsia going into eclampsia 10 years ago, and my legs also turned blue and circulation was bad. Could this and DVT be related? I will have my blood tested after the 6 months for disorders BUT in the mean time I pray for a miracle.

The horse did not kick me he got a fright, reared fell backwards, and when turning around stepped on me.425kg on the liver. My liver "popped" laceration 7x8cms. Miracle that the liver did not start to bleed, luckily for the liver the blood clotted, but now not so lucky the DVT and PE.

Oh and I am 32 years old, living in South Africa.

Have a nice day!

God bless









I

Hi Annemarie

Thanks for sharing your story. I too was diagnosed with PE and DVT. I so feel for you, Sharon and Dero who had to give up something that you truely love. The disorder is more than I can handle at times, without having to give up something so dear to me. As Sharon mentioned, here is hoping that yours will be for the six month period only.

Where are you in SA - I'm in Johannesburg.

Keep well and stay in touch.

Annemarie--

You mentioned that maybe God wants you to know that you are not in control. I think that is a lesson we all have to learn. We all want to be our own Gods, in charge of our own lives. I could not have gotten thru this ordeal w/o God. I believe in Jesus Christ as my Savior. He gave His life for me and nothing that is required of me in this life is too much in light of what He has given me--both in this life and the one to come. I do know that if you have given your life to the Christ and have made Him the Lord of your life--to live for and serve Him in all that you do, that not only does He forgive our sins, but He walks with us thru every hardship and trial of this life and He fills us with joy unspeakable and full of glory. Even in my grief I have had joy in Him as He fills my spirit w/ Himself. The Bible calls that the peace that passes understanding and it is truly. Then when it is our time to die, He has given us His own inheritence from His Father, to live and rule in heaven with Him. It sounds too unbelievable to be true, but I know that it is.

I actually died when I was 12 years old from a copperhead snake bite. I cannot say what it feels like to die from DVT or PE, because I have not had that experience. But I have died. I gave my life to the Lord when I was 8 years old. I was in so much burning pain in my hand and my arm, that I prayed to die. I told the Lord that I knew He Had forgiven me and that I was not afraid to die and wanted to be with Him. I told Him that it hurt too much to live thru and begged Him to take me away from the pain. I immediately began to float upwards and felt the pain flow out of my arm and hand. Then I felt the weight of my body fall away. Then I heard voices below me, but have no memory of what they were saying or doing. I saw nothing like my body laying on the bed or people running around as they describe on the movies sometimes. I was focused on what I was moving toward--light and love and warmth that I can only descirbe as perfectly mixed together as one substance that permeated me and I it. I felt the presence of others--tho I never saw them. I knew their thoughts and they knew mine without words. My uncle, my granfather, many people I knew I was related to but did not know how; and others who loved me and I didn't know why they did.

Then I heard my name, "Sharon" with absolute love and affection and I recognized the voice as the voice of Jesus as if I had heard HIm every day of my life! He said, "I know you want to stay, but you cannot now--I have things for you to do." I was so disappointed but never felt rejected. I just wanted to be with Him and that is the only place I ever wanted to be, and yet I wanted to please Him more than anything as well. I knew I had a choice to stay or go and He was leaving it to me, but there was no way I could ever do anything to disappoint Him, so I said, "Yes, Lord," (which was not in my earthly way of speaking at 12 years old) and I began to float down and away, toward the voice of my Mother crying. I said to Him, "You are right Lord, if I died, she would lose her mind and maybe my Daddy, too." As if you have to tell the God of all creation that He is correct about anything! Anyway I was 12, I did not know how silly that was and I didn't feel that He thought I was silly--it just seems that way every time I think of it. I only do tell it when I feel the Lord wants me to do so and I feel He wants you to have assurance that He is waiting for you if you want Him in your life now--He will always be there for you. He says "I will never leave you or forsake you," and I know personally that is true.

As I floated I began to feel the weight of my body come back and it felt like a ton--tho there was no way I could have weighed more than 65 lbs at 12 y/o! Then the searing pain came back in my arm, like fire flowing thru the veins--not unlike the DVT felt in my thigh actually. I have never been afraid to die since then. Later, I found that my blood pressure had fallen to nothing and my heart did stop for a brief time. The doctor happened to be in my room when it happened and immediately began to squeeze fluids into my arm to raise my pressure and started CPR and I came around very quickly I guess. My parents will not talk much about it. My Mom refuses and my Dad says he just doesn't remember it well bcs he was in shock I guess.

Anyway, I can wait to ride again because I will ride again with the Lord in paradise. I know that horses are the Lord's favorite animal because He made them so beautiful and powerful and so gentle and kind at the same time. I think they reflect His nature as well. I have been blessed to have them for most of my life, so I cannot complain. I do miss them, but He gave me music again to fill the time I was spending with them. He will give you something as well if for any reason you must give them up.

I hate to hear that you had pre-eclampsia, it could be related to a clotting disorder. Do you have a history of migraines, miscarriages, fertility issues, any kind of neurologic-like symptoms (such as falling, vertigo, balance issues, dizziness, loss of vision, hand tremors, weakness on one side, tingling and needles in arms or legs, speech difficulty, memory problems)?

Try to focus on the good of each day. Here is the way I try to look at it--if I were going to die next week, why waste the time I have left? I don't know if you were only worried about the process of death or what happens after you die or both. If you know the Lord, I love to have others to hold me accountable to do His word and to remind me hold onto it when I am weak or weary. I sometimes need to be reminded of what He has done for me and how faithful He is to all HIs children when we do not deserve His mercy and grace. If you do not know Him, I will be more than happy to point you to scripture that answers your questions and tell you how to know Him. I always tell people they have nothing to lose by calling on the Lord to save them. If He does not exist, what have you lost but a couple breaths of hot air? If He does--you are given new life, and that more abundantly, and eternity in heaven--total forgiveness, love and acceptance. What more could we need? Take care.

Hi there

Wow what a story Sharon. I have similar stories of very close to death experiences before. This is not my only one..but still as human being I think we all experience some uncertainty about death...that doesn't mean being scared of it we just move in a different dimention...a very nice story explaining I think how we me might feel, I got from my animal communication course:

Parable of the Twins:

Once upon a time, twin boys were conceived in the same womb.

Weeks passed and the twins developed. As there awareness grew, they laughed for joy: "Isn't it great that we were conceived? Isn't it great that we'r alive?

Together the twins explored their world. When they found their mother's cord that gave them life, they sang for joy!"How great is our mother's love, that she shares her own life with us!

As weeks stretched into months, the twins noticed how each was changing."What does this mean?"said the one."It mean our life in this world is drawing to an end."says the other.

"But I don't want to go"said one."I want to stay here always"

"We have no choice" says the other. "But maybe there is a life after birth"

"But how can that be?"responded the one."We will shed our life cord and how is life possible without it?
Besides, we have seen evidence that others have been here before us and none of them have returned to tell us there is life after birth. No, this is the end.

And so the one fell into deep despair saying, "If conception ends in birth, what is the purpose of life in the womb? It is meaningless. Maybe there is no mother after all.

"But there has to be,"protested the other."How else did we get here?How did we remain alive?

"Have you ever seen our mother?"said the one. "Maybe she only lives in our minds. Maybe we made her up because the idea made us feel good.

And so the last days were filled with questioning and fear. Finally the moment arrived. And when the twins passes from their world, they openend their eyes and cried - for what they saw exceeded their fondest dreams.

So that's realy a good example of moving ahead into another dimension and leaving the physical body behind.

AnneMarie,

Welcome! My name is Tom and I have survived two separate DVT's and a PE. My first DVT happened in 1992. I had just completed a successful season of mountain bike racing when just before Thanksgiving I noticed my calf was giving me problems. As the pain became more persistent I went to see my naval doctor (was serving on active duty in the U.S. Submarine Force) who thought I had either pulled a muscle or torn one as a result of my biking. I was prescribed anti-inflammatory medicine and told to come back if the pain didn't get better. As the week went by the pain grew more intense. By the weekend I couldn't stand to bear any weight on my left leg. It was now obviously swollen and turning a very nice shade of red. I was sent to radiology to have a venogram performed (dye shot into the foot area then x-ray picture taken). The venogram showed I had a series of clots from my ankle to my hip. I was immediately hospitalized.

During my hospital stay, the attending physician had concerns about my resting heart rate which was elevated. He asked if I was experiencing any breathing problems; which I was not. A lung scan was ordered which showed I had a typical wedge shape confirming a pulmonary embolism. That night I had the Catholic Chaplain stop by. Little did I know I was lucky to be alive. I was told I probably would not regain full use of my left leg due to the anticipated damage. After release from the hospital I really believed that, just trying to walk was painful and I didn't foresee if geting any better. But as the weeks went on things improved. After six months of coumadin theraphy I was finally back to normal and in 1993 I proved the doctor wrong by having the best two years of my amature racing career. Then in 1995, it happened again.

In 1995 I just finished the first of a two day mountain bike race up at Sugarloaf Maine. I woke up Sunday to pre-ride the course and was having a familar calf pain, this time in my right leg. I pre-road the course and it seemed to get better. I committed to the race but mid-way through decided to quit. The next day a ultrasound confirmed I had suffered yet another DVT.

In 1996, I was diagnosed by Harvard Medical as having Factor V Leiden (homozygous), a known clotting disorder. I spent about six years fighting to remain on active duty in the Navy and as part of that really had to learn about my medical condition in order to challenge the naval medical system. This period of learning not only was meant to benefit me, but also in the interim to help benefit the futures of my two young children who inherited my clotting disorder.

Right now for you and many more who suffered a DVT/PE, recovery seems so far off. You will recover though and when you do, you shouldn't be afraid to live your life. You will need to exercise caution. I don't think your dreams of horseback riding are shattered . For now, I would just put on short term hold.

While on anticoagulant medication you do need to exercise caution and really listen to your body and what it's telling you. Because I have a clotting disorder and have suffered two separate DVT's I am on coumadin for life. Because I am on preventative doses of coumadin in a lower target INR range 1.5-2.0, I don't experience the bleeding problems or complications that may of the patients experience who are on higher doses of coumadin. I still ride mountain bikes (though I'm more cautiously) and do pretty much everything I did before suffering blood clots.

There are several resource website I recommend. The first website belongs to my good friend Deb Smith of California. Deb started www.fvleiden.org back in 1998 shortly after another web group that we both belonged to had gone off-line. Deb is a pioneer in helping blood clot and blood clot disorder patients. Her site is located at www.fvleiden.org

The other website belongs to a national Patient Advocacy Organization who represents the patient community here in the U.S.. The National Alliance for Thrombosis and Thrombophilia (NATT) is a patient-driven all volunteer organization who formed in 2004 as the result of a lack of patient support here in the U.S. You can find their website at www.stoptheclot.org or www.nattinfo.org

Hi Tom

Thanx for your inspiring story. I am so glad that you can do mountain biking again.


I have to admit this 2 weeks being an emotional challenge.

I have decided that this condition is not gonna take the better of me, and there must be a reason why I survived so far - being 2 weeks since diagnosed, all I can think of is riding again and that is the first thing I am going to do once better.

I also decided if the doctor give me after 6 months the life sentence of Warfarin for life, I am going to carry on with horseriding and my life but I will be more carefull. My life is all about horses and I am not going to quit because of something that might not even happen. Some might say that I will be stupid and careless but life all over is so short, I would rather spend it happy and with the things I like and die young than being old and miserable because I gave up what I love doing most. To live by faith and not fear. I think every person in this life, even the once without DVT has the same chance of death than we do. If it is your time, there is nothing you can do to prevent it. All we have is today.....and we can be happy.

God bless

If your doctors does decides to keep you on coumadin, inquire if the PREVENT Trial dosing requirements would work for your medical condition. The Prevent Trial showed a low INR target range of 1.5-2.0 was a succesful preventative treatment for those on long-term coumadin use. Keeping your INR in this range keeps you from experiencing the bleeding problems associated with coumadin in the higher INR range . It also equates to a better quality of life when you can do what you want to (within reason - You still wouldn't want to compete in any contact sports or boxing)

Knowledge is definitely power when is comes to living as a DVT/PE survivor. Knowing what to do and what not to do improves your quality of life. Also listen to your body. For me, I gave up racing (broke my collarbone the last time I raced). I just couldn't keep up with the younger racers, plus I found out as you get older, it really hurts when you fall Though I don't race I still enjoy getting out there any riding my bike. I do, however, avoid steep drop offs and cliffs which I know could result in me denting my bike frame....

Hello Annemarie...and everyone else here. I so enjoyed your story "Parable of the Twins". What an interesting concept! I just copied and pasted it and sent it off to my sister (who is my twin). My sister is a Christian and has just faced a life and death situation - very serious heart surgery, for the 2nd time. We are not young either - just turned 68 this year.

Now - the reason for my being in this forum, which I just discovered today when reading a magazine article.

Back in 1994, when I was 54 years old, I was diagnosed with heart disease. I spent a week in the hospital and had the first 2 of 3 angioplasties. After being home for a couple of weeks, (actually I had already returned to work) my left foot and ankle began to swell. At first I didn't think it unusual because it seems I have always suffered with swollen feet from time to time especially in heat and humidity. More often that not though, my feet were normal and I could do anything I wanted, including wearing high heels when I felt like it!

Well, my foot and my leg got more and more swollen and when it got up as far as my knee I began to get worried, especially when I got out of bed one morning and couldn't put my foot on the ground - it was so painful. My sister (visiting at the time) went to the drug store and borrowed some crutches for me.

I finally went to the ER, and they had me going back every day to check it. I spent most of the day there each time. They tried every test. I kept seeing different doctors and one suspected I had gout, and another one susbected I had cellulitise. My sister told them I had neither because her husband had suffered from both, and she knew I didn't have the symptoms. Then one doctor suggested an ultrasound to see if I had any clots. None showed up, but they said my leg was too swollen to do a veinogram, which is what was needed if I had DVT.

Finally, after a week, I went to my own doctor and he sent me to an iternist across the street, who immediately put me in the hospital, packed my leg in ice to make it go down a bit, and I was able to have a veinogram - which showed 3 blood clots in my calf.

I know I was sent home on coumiden, but I don't remember how long I was taking it for. Maybe 3 - 6 months. All I can say is, that after reading the magazine article, and after reading what some of you folk are going through indefinitely, I'm so glad I didn't have to stay on it.

My problem is, because it took so long to diagnose my DVT, it did permanent damage to tissue in my foot. Now my foot swells at the drop of a hat. I could no long sit at a desk and do my job, and I can't stand for any length of time. Walking is the only thing that doesn't make it worse. Also, I have never again been able to wear high heel shoes - which doesn't bother me - but not even a 1 1/2" heel! .

Now, 14 years later, I know things will not get any better, but hopefully they won't get any worse either! I must say, sometime I feel like I'm dragging about 20 lbs around! I always, always, wear elastic stockings when travelling.

Well, that's my story. It's been interesting reading about all you brave people. For me...I guess things could be a lot worse.

Hi Jill,

Thank you so much for sharing your story. Although it's sad to hear it, (I can empathize to the degree I'm able), it's nice to hear from someone who has experienced this for some time. For me too, walking seems like the best medicine--strange as it may seem--it really helps me to get the blood flowing--when I can get out there and DO it! Heels are still okay for me, although I was standing (teaching) for the last couple of days, and for the first time, it was pretty tough. (But more from a foot perspective, than a DVT leg perspective.... but that's par for the course I suppose!)

How is your heart doing now?

Look forward to chatting with you more Jill,
Brenda

Hello Brenda,

I'm sorry it's taken me so long to reply to your message. I sort of 'lost' the forum I was on!

My heart condition is stabilized now - meaning my meds haven't changed for a long time. Actually I am on so many meds for blood pressure, and I have gone from 2 a day to 1 a day for one of the meds, because sometimes my blood pressure dips so low. Still, I am so much luckier than my sister. She is recovering nicely from her last surgery, but too slow for her liking! She wants to feel 'normal' again.

How long ago did you have DVT, and do you know what caused it? I don't think our doctors spend enough time searching for the causes of most ailments, do you? For me...I was told that my DVT was most likely caused because I was put on complete bed rest when I was hospitalized with angina, I don't don't believe that though, because I was only in hospital for a little less than a week. However, they did immediately take me off of hormone replacement therapy, (but wouldn't admit that it could have been the possible cause) because I had been on it for several years. I have attempted to go back on it (the weakest dose) a few times because of the hot flashes - which can be pretty unbearable. I have now been off of it for about 4 years, on my doctor's advice. I did a lot of reasearch and I definitely think that the HRT was the cause of my DVT.

Do you have to take coumadin still? After reading the magazine article I really feel sorry for anyone who has to take a blood thinner on a permanent basis because it can interfere with so many other medications and treatments. I didn't realize that before.

Hope to chat with you some more.

Jill

Hi Jill and welcome to Life After DVT.
Glad that you liked the article (if you are talking of the article that was posted in the magazine called Good Times/July 08) which can also be found at this link. https://lifeafterdvt.forumotion.com/good-reads-books-or-magazines-f29/article-from-good-times-june-08-edition-t259.htm
Eva did an exellent job in writting it.
Anyways Jill, I hope that the infomartion here will help you and others in pursuing a (as close to )normal life after DVT.

Denis