Ever suffered from blood clots? Need feedback!
leslturn8
Posts: 505 Member
Before I start.............I have asked MY doctor and my specialist and there is nothing there, nothing wrong.....
My question is: After your blood clots have gone and there is no signs of damage, do you still have issues with your blood clot area? e.g. My right leg had blood clots from shin all the way up to behind my bowel. It took 4 weeks before I was allowed to move around properly, by that stage, I couldnt walk more then 3 metres without stopping. It progressed, i could walk 10 metres, progressed again and i could walk 1 km but then id need a rest. I am at the point where I am fine, nothing wrong with me.....except that I cant walk at a decent pace for more then 30 seconds without my leg cramping up, getting swollen and becoming too painful to walk on. Anyone have any idea? Experience?
If you want to know the whole journey read on:
In February 2013 I woke up, felt like it hurt it inhale. It was only faint but i noticed it. The day went on, I went fishing and I sat upright in the boat, 5 hours later, i was just so uncomfortable! It was like a stab every time i inhaled. It was getting worse as the morning progressed and I stopped fishing and sat on the bottom of the boat taking selfies. It wasn't relieved here but I was trying to distract myself.
I got home just after lunch, had a shower and went to my doctors. I only seen him starting 2013 so he was new to me. The receptionist sent me around to the treatment room because i was getting the lung pains and they did a (can never remember the test) engiogram? I sat and waited for my doctor, on a scale of 1-10 it was a 8. The student doctor picked up the abnormalities on my scan and informed my doctor who was teaching her. He agreed and excused himself taking my scan with him. That was a WTF moment, the student doctor continued asking questions and was called out......2 Doctors left the room......WTF. So the Student comes back after 5 minutes and informs me that my Dr researched something that concerned him and he want to send you to the hospital. "Just a precaution, its a possibility you have blood clots and we want to rule it out."
So I got in my car and went home and my uncle took me to the hospital. I waited for about an hour before triage seen me and then 3 hours until I was seen by a Dr. It is hard to get blood from me because my body loves it so much. So when the Dr tried, he kept missing my vein. He asked me if i was getting chest pains, if im cold, how are my legs etc etc etc. He heard I went fishing and said "your sunburnt and dehydrated." I was barly pink and he put me back into the waiting room with a bottle of water, and 3 containers of juice. I had to drink it all in half an hour and he would come get me. An hour later, I was freezing! still couldnt get any blood, They had done a chest Xray and the Dr said "I cant see anything, take some panadol, if pain persists go back to your local Dr."
What a waste of time! I still had the pain, it hadnt gotten worse, but ti hadnt eased off either. I was home, I was cold and tired, so I went to bed at 7pm. As soon as I laid down, the excruciating feeling I was over whelmed with made me cry outloud, I sobbed like a *****! I sat back up and it relieved it. I was so tired and I knew I would be back at my Dr the next day. So i tried to lay down again, no success, my organs were pushing up-against my lung and it wasnt possible to releive the pain laying down on either side or my back or stomach. I propped myself up on pillows my body barely at a decline and my head dropped to the side. I slept like that for an hour and adjusted the entire night. By early morning, I was use to swinging my right leg down off the side of the bed to lever myself into a standing position without bending and it was 6am! The pain had relieved somewhat and I noticed most of my pillows had sunk down to a slightly raised angle. I went to the bathroom and went back to bed. It was still tender, however I could lay down flat! I was so bloody relieved!
I am in the habbit of laying down til I have to get up and I will play with my phone, facebook, mfp, ebay etc. I was laying there on my back on the phone to my sister with my knees bent infront of me. It was 8oclock and I decided that I better get up! So I glanced at my legs and announced to my sister. "Either I have slacked off on the exercise on my right leg or my thigh is massive!" I wasnt surprised, it was probably, 5cms difference, or the angle I was on?
So i hung up and sat up, I was home alone. As soon as I put my leg down on the floor I felt I pulled my groin muscle. It hurt and I stood up and I went down like a tonne of bricks. I didnt know what happened, my leg was all......it felt tight and thick and dead. I dragged myself to the bathroom to have a shower, maybe it was just asleep? Figured it I have a shower maybe it would come good, if not I knew I wasnt going up to the hospital without a shower! I struggled out of my short pjs and I struggled into the shower. I noticed my right leg was a lighter shade of purple. That was the quickest shower of my life, I struggled into some shorts and I limped to my car. I needed to go to the hospital and I couldnt put any pressure on my leg so driving was out of the question and I was crying again. My uncle came home and took me up.
I limped the whole way to the emergency room from the car stopping bay and took a seat. I was the third one seen as there were only 2 in the waiting room. The triage nurse asked me what I did. I pulled a muscle in my groin and my leg went purple and numb and it feels so tight! The triage nurse asked me questions and then i brought up how I was in yesterday about my breathing and the xray and the blood clot theory and she said "That dr doesnt know what he is talking about, you cant see blood clots in a chest xray." I was taken and point in a bed, seen a different Dr and the Nurse that was assisting the Dr yesterday was there and remembered me, said how amazing it was I was back for that reason. I was taken for an ultrasound on my leg and apparently it was rittled, they hadnt seen that much clottage before. I was put in a ward, I limped to the bathroom and on my way back i suffered a dizzy spell, i was so nauseated, i clutched the wall. The nurse chided me for not calling for help to go to the bathroom. They put me on the hospital toilet wheelchair and took me back to my bed.
I was told that they wont do a radiation test, the symptoms I had yesterday make it obvious I have blood clots in the left lung because i have them in my leg. I was seen by a few Drs and I was swapped to another ward full of stroke patients...makes you feel awesome, 25 and in a stroke ward. I get cramps in the neck and i can crack it unless im really tight and it was getting painful so I asked for some deep heat, 5 minutes later i was engulfed with the lung pain I had the day before i was admitted. I was crying out, it was close to midnight and sobbing like a 2 year old. They gave me morphine and 15 minutes later i was silent. I had blood taken out of me every day, I had needles every day, I had tablets every day. I was in for 5 days and I just wanted out! They measured my leg 2 times a day and continued to monitor me. I was being handed over to the TACT team and they deal with blood clot people. I was given the chance to go home. I took it! I was taken home, my Tact team called to arrange visiting and I was told to go to my Drs after Tact team hands me over.
Blood taken every day, clexane needles given every day and I had to take Warfarin tablets every day. This went on for 12 days. My level had to be settled and my dosage right and finally I was told to go to my Drs and that was that. By this stage, I was sitting down alot, when I got up I walked 3 metres and had to stop and rest, it was too much on my leg, it cramps up badly. It took me 6 rests to get in to my Drs. I sat and waited for my turn. My student Dr was happy to see me and asked how I went in the hospital and I informed her of the fishing the couldnt get blood and how I was sent home. My Dr wasnt impressed when he heard and then I informed them how I went back the next day due to a pulled muscle and was admitted.
My Dr was spot on and they hadnt gotten sent the discharge papers. My Dr set up warfain scripts and blood tests scripts and I was getting my blood tested 2 times a week, then once a week and now once a fortnight. Finally he received the files and informed me that I am Factor V Leiden and something else blood disorder. I was sent to a specialist, did several tests and both my Dr and the specialist were disgusted how I was missing files and didnt have the right tests. The tests that they sent me for came back clear, the photo guy doing my ultrasound said there is no evidence and he doubted I ever had them. I was furious and my Dr reassured me thats why he is a photo guy.
I was sent for another ultrasound a week later through my specialist again and these were specialists. I asked him and he said its wrong to say it and then confirmed that he too couldnt find any damage, he then informed me that it is possible that they could have dissolved rappidly as I sought treatment quickly and didnt form enough to produce damage. My next ultrasound was abdominal. The same guy did it and he located some damage in my lower pelvic region. I said Yes! The is proof! He laughed as I apparently am the only person to cheer that something was found. Not having proof and people saying now, i wanted proof, so it all wasnt for nothing.
I was fitted for a compression stocking and sent on my way, I have to go back in February.
My Dr has continued with my warfarin treatment and has done tests to show that I dont have any issues and my leg should be fine. I have have to walk at a leisurely pace. I cant do what I use to do :sad: There are different workouts I can do, if they involve my legs I have to take a break if i feel they are getting over worked, of course only my right one needs it! I even thought hey I will workout in my stocking and it wont go tight....doesn't work like that. I barley wear it now and I know I need to....
I just cant get past this leg!
Any suggestions on why it still goes tight, my left one doesn't!
My question is: After your blood clots have gone and there is no signs of damage, do you still have issues with your blood clot area? e.g. My right leg had blood clots from shin all the way up to behind my bowel. It took 4 weeks before I was allowed to move around properly, by that stage, I couldnt walk more then 3 metres without stopping. It progressed, i could walk 10 metres, progressed again and i could walk 1 km but then id need a rest. I am at the point where I am fine, nothing wrong with me.....except that I cant walk at a decent pace for more then 30 seconds without my leg cramping up, getting swollen and becoming too painful to walk on. Anyone have any idea? Experience?
If you want to know the whole journey read on:
In February 2013 I woke up, felt like it hurt it inhale. It was only faint but i noticed it. The day went on, I went fishing and I sat upright in the boat, 5 hours later, i was just so uncomfortable! It was like a stab every time i inhaled. It was getting worse as the morning progressed and I stopped fishing and sat on the bottom of the boat taking selfies. It wasn't relieved here but I was trying to distract myself.
I got home just after lunch, had a shower and went to my doctors. I only seen him starting 2013 so he was new to me. The receptionist sent me around to the treatment room because i was getting the lung pains and they did a (can never remember the test) engiogram? I sat and waited for my doctor, on a scale of 1-10 it was a 8. The student doctor picked up the abnormalities on my scan and informed my doctor who was teaching her. He agreed and excused himself taking my scan with him. That was a WTF moment, the student doctor continued asking questions and was called out......2 Doctors left the room......WTF. So the Student comes back after 5 minutes and informs me that my Dr researched something that concerned him and he want to send you to the hospital. "Just a precaution, its a possibility you have blood clots and we want to rule it out."
So I got in my car and went home and my uncle took me to the hospital. I waited for about an hour before triage seen me and then 3 hours until I was seen by a Dr. It is hard to get blood from me because my body loves it so much. So when the Dr tried, he kept missing my vein. He asked me if i was getting chest pains, if im cold, how are my legs etc etc etc. He heard I went fishing and said "your sunburnt and dehydrated." I was barly pink and he put me back into the waiting room with a bottle of water, and 3 containers of juice. I had to drink it all in half an hour and he would come get me. An hour later, I was freezing! still couldnt get any blood, They had done a chest Xray and the Dr said "I cant see anything, take some panadol, if pain persists go back to your local Dr."
What a waste of time! I still had the pain, it hadnt gotten worse, but ti hadnt eased off either. I was home, I was cold and tired, so I went to bed at 7pm. As soon as I laid down, the excruciating feeling I was over whelmed with made me cry outloud, I sobbed like a *****! I sat back up and it relieved it. I was so tired and I knew I would be back at my Dr the next day. So i tried to lay down again, no success, my organs were pushing up-against my lung and it wasnt possible to releive the pain laying down on either side or my back or stomach. I propped myself up on pillows my body barely at a decline and my head dropped to the side. I slept like that for an hour and adjusted the entire night. By early morning, I was use to swinging my right leg down off the side of the bed to lever myself into a standing position without bending and it was 6am! The pain had relieved somewhat and I noticed most of my pillows had sunk down to a slightly raised angle. I went to the bathroom and went back to bed. It was still tender, however I could lay down flat! I was so bloody relieved!
I am in the habbit of laying down til I have to get up and I will play with my phone, facebook, mfp, ebay etc. I was laying there on my back on the phone to my sister with my knees bent infront of me. It was 8oclock and I decided that I better get up! So I glanced at my legs and announced to my sister. "Either I have slacked off on the exercise on my right leg or my thigh is massive!" I wasnt surprised, it was probably, 5cms difference, or the angle I was on?
So i hung up and sat up, I was home alone. As soon as I put my leg down on the floor I felt I pulled my groin muscle. It hurt and I stood up and I went down like a tonne of bricks. I didnt know what happened, my leg was all......it felt tight and thick and dead. I dragged myself to the bathroom to have a shower, maybe it was just asleep? Figured it I have a shower maybe it would come good, if not I knew I wasnt going up to the hospital without a shower! I struggled out of my short pjs and I struggled into the shower. I noticed my right leg was a lighter shade of purple. That was the quickest shower of my life, I struggled into some shorts and I limped to my car. I needed to go to the hospital and I couldnt put any pressure on my leg so driving was out of the question and I was crying again. My uncle came home and took me up.
I limped the whole way to the emergency room from the car stopping bay and took a seat. I was the third one seen as there were only 2 in the waiting room. The triage nurse asked me what I did. I pulled a muscle in my groin and my leg went purple and numb and it feels so tight! The triage nurse asked me questions and then i brought up how I was in yesterday about my breathing and the xray and the blood clot theory and she said "That dr doesnt know what he is talking about, you cant see blood clots in a chest xray." I was taken and point in a bed, seen a different Dr and the Nurse that was assisting the Dr yesterday was there and remembered me, said how amazing it was I was back for that reason. I was taken for an ultrasound on my leg and apparently it was rittled, they hadnt seen that much clottage before. I was put in a ward, I limped to the bathroom and on my way back i suffered a dizzy spell, i was so nauseated, i clutched the wall. The nurse chided me for not calling for help to go to the bathroom. They put me on the hospital toilet wheelchair and took me back to my bed.
I was told that they wont do a radiation test, the symptoms I had yesterday make it obvious I have blood clots in the left lung because i have them in my leg. I was seen by a few Drs and I was swapped to another ward full of stroke patients...makes you feel awesome, 25 and in a stroke ward. I get cramps in the neck and i can crack it unless im really tight and it was getting painful so I asked for some deep heat, 5 minutes later i was engulfed with the lung pain I had the day before i was admitted. I was crying out, it was close to midnight and sobbing like a 2 year old. They gave me morphine and 15 minutes later i was silent. I had blood taken out of me every day, I had needles every day, I had tablets every day. I was in for 5 days and I just wanted out! They measured my leg 2 times a day and continued to monitor me. I was being handed over to the TACT team and they deal with blood clot people. I was given the chance to go home. I took it! I was taken home, my Tact team called to arrange visiting and I was told to go to my Drs after Tact team hands me over.
Blood taken every day, clexane needles given every day and I had to take Warfarin tablets every day. This went on for 12 days. My level had to be settled and my dosage right and finally I was told to go to my Drs and that was that. By this stage, I was sitting down alot, when I got up I walked 3 metres and had to stop and rest, it was too much on my leg, it cramps up badly. It took me 6 rests to get in to my Drs. I sat and waited for my turn. My student Dr was happy to see me and asked how I went in the hospital and I informed her of the fishing the couldnt get blood and how I was sent home. My Dr wasnt impressed when he heard and then I informed them how I went back the next day due to a pulled muscle and was admitted.
My Dr was spot on and they hadnt gotten sent the discharge papers. My Dr set up warfain scripts and blood tests scripts and I was getting my blood tested 2 times a week, then once a week and now once a fortnight. Finally he received the files and informed me that I am Factor V Leiden and something else blood disorder. I was sent to a specialist, did several tests and both my Dr and the specialist were disgusted how I was missing files and didnt have the right tests. The tests that they sent me for came back clear, the photo guy doing my ultrasound said there is no evidence and he doubted I ever had them. I was furious and my Dr reassured me thats why he is a photo guy.
I was sent for another ultrasound a week later through my specialist again and these were specialists. I asked him and he said its wrong to say it and then confirmed that he too couldnt find any damage, he then informed me that it is possible that they could have dissolved rappidly as I sought treatment quickly and didnt form enough to produce damage. My next ultrasound was abdominal. The same guy did it and he located some damage in my lower pelvic region. I said Yes! The is proof! He laughed as I apparently am the only person to cheer that something was found. Not having proof and people saying now, i wanted proof, so it all wasnt for nothing.
I was fitted for a compression stocking and sent on my way, I have to go back in February.
My Dr has continued with my warfarin treatment and has done tests to show that I dont have any issues and my leg should be fine. I have have to walk at a leisurely pace. I cant do what I use to do :sad: There are different workouts I can do, if they involve my legs I have to take a break if i feel they are getting over worked, of course only my right one needs it! I even thought hey I will workout in my stocking and it wont go tight....doesn't work like that. I barley wear it now and I know I need to....
I just cant get past this leg!
Any suggestions on why it still goes tight, my left one doesn't!
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Replies
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Sorry 2 hear about ur experience... I don't really have any advice or info 4 u but just wanted 2 tell u how lucky u are... My stepdad had a very similar experience b4 he died at 43 from blood clots... Drs kept sending him home too... He was turning blue, passing out, having really bad trouble breathing, heart rate & bp were up but they still kept sending him home & eventually gave him an apt with a heart Dr but he never made it 2 his heart Dr apt... He passed away that morning after my Mom called an ambulance because he couldn't take it anymore... He was ok on the way 2 the hospital but as soon as he got inside he flatlined & there was no bringing him back... The autopsy eventually showed he died as a result of pulmonary embelism (blood clots 2 the lungs)... They said they weren't sure where the clots came from but he had been having trouble with leg swelling & thought it was just his gout acting up... Oddly enough my Mom passed away a month after he did... She was 55... She was diagnosed with lung cancer 2 days after his funeral... Anyway, just want u 2 know how lucky u really are 2 be here... Hope u get the answers u need & get 2 feeling btr...0
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I had blood clots and a PE in 1995 and yes I still suffer fro the damage to my leg and lungs.
But the good news is, you are still here and that it will get better with time.
My leg still swells regularly, and my lungs hurt when I overdo the exercise.
Your system has suffered a huge shock but it will recover... I was 27 when it happened to me.
The main thing to remember with clots is go with gut instinct if you think something is wrong speak to your doctor and anyone who will listen..dont take no for an answer.
Hope this helps0 -
I had a blood clot in the superficial vein system in my leg last year (in my vericose vein). I still get very achy in that area if I overdue it, or for some reason, the first day of my period the pain is really bad. My dr. has me taking a baby aspirin a few times a week and I also drink tomato juice a few times a week, which is a natural blood thinner. I now have a medical reason for getting the vericose veins removed (insurance would now cover it due to the clot), but I don't want to go through the surgery and painful revovery, so I put up with the occasional pain in that area.0
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So sorry to hear about your experience. My mom also has the Factor V Leiden condition. It's a pain. She actually suffered from a pulmonary embolism because of this condition. I hope you are able to find reasons for your pain and I hope it gets better for you!
As far as exercise, maybe you can do swimming or something that is less weight-bearing, to get your blood moving and keep your legs still moving?0 -
Thought I'd pass on some links about Factor V Leiden you might find useful:
http://en.wikipedia.org/wiki/Factor_V_Leiden -- note: it mentions a link between flare-ups and birth control pills
http://www.mayoclinic.com/health/factor-v-leiden/DS01083 -- several pages long and lots of good info
http://www.fvleiden.org/ -- looks like a helpful source for you including pages for those who are newly diagnosed
google 'Factor V Leiden' and you'll find a bunch more helpful sites.0 -
The doctor should take the time to answer all your questions. I suggest you make a list of all your questions and make an appointment to be seen to just talk about your questions and concerns. You deserve to know what is just going to be like this, what is something you need to see medical, and what can you do to make it better. When you make the appointment tell the office you will need enough time at the appointment that will allow you time to discuss all your health issues and concerns with the Dr. Don't let the Dr. leave until you understand your current health and all your questions are answered. Take someone with you as well that can also hear what is said and help you if having trouble talking to Dr.0
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I dont' have any advice for you, but I also just suffered a DVT and multiple PE's in late July. My leg never did really hurt but my difficulty breathing is what lead my dr. to test for clots....
I'm still trying to figure out how it all happened, and dealing with a lot of emotions around going from a really healthy and athletic person to one who isn't.
It's tough....you're leg issue is much worse than mine, but the whole thing is generally scarey. I understand what you are going through....0
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