Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Hi,
yup, i've got another stinking blood clot. the only thing i can figure is that once you find out something you're good at, one must stick to it.
first time i had a clot the tech goofed, said you have no clot. go away.
so i was sent to the orthopedist forest. they said let's take a laid back approach. maybe you have a baker's cyst
so they gave me a shot in my knee.
what were my symptoms one might ask? Red, hot tender to the touch, couldn't put heel on the ground,limping ......saying bad words in a made up language to save my delicate ears.
no it was not a bakers cyst. a few weeks later i was trying to do a simple household chore and it occurred to me that this could easily be my final earth day. talk about the pyramid game for "things that suck".
lots of difficulty breathing. off i went to the land of medical care.....this time they got in high gear. not only did this patient have a clot, she now had a plethora of clots.
and uh huh, you guessed it, blood clots in both the left and right lungs.
the RN leaned into my face as she hooked me up to the heart monitor.....all part of the welcome package when they check you into their 5 star hospital resort.
it was a tough time.......
then in 2010, got another clot, this time they said it's a superficial thrombosis, not as bad, serious of course, but they left me to my own outpatient devices.......both time i was treated initially with lovanox/heparin, then with coumadin/warfarin for a good long while.
both times the hematologist said it's better for this chronically ill patient w/autoimmune disorders to take aspirin daily vs. forever and ever amen blood thinners.
this time my leg became swollen and i tried to blame it on the delicious food i ate at a restaurant that day......but nay nay, after a few days i said well shoot. still puffy, swollen........better go in.
and whoops there it is, another clot. it's at the back of the knee in the popliteal vein........this time i am on xarelto. new doc, new methods.
currently taking 15 mg am and 15 mg pm. got a lighter cane w/a tripod to help with balance. wore mean tight butt kicking compression socks and when i took them off i had terrible cramps in my left foot.
also had cramps when i took a nap w/them on. not saying the socks did it, just saying that's when it happened.
made my appt today to see the hematologist on the 19th and i have a follow up w/my primary care on the 18th......think i should resched my follow up to after we find out what the hematologist says.
thinking this time they will say madam you have a blood disorder and you will need to take blood thinners for the rest of your planetary stay.
what else? well the xarelto makes me itch, can't take Benadryl....so we tried another anti histamine, didn't help, now I'm on the generic for Zyrtec. seems to help a little more, but we'll see.
the lovely folks at Xyrtec provided me with a one time free 30 pill supply of 20 mg tabs. my doc said he would save up 20 mg samples for me as well........the cost of xarelto is a lot lot lot higher than any other meds i'm on....
they pulled me off daily aspirin and took away the celebrex, so it protects me from death, not so much from pain in joints, soft tissue and the walking is a lot more unstable.......but hey what's life without a little risk or three?
i do take it all very seriously but today i need a break and some support too............not happy about having another stinking clot......who would be? nobody.....nobody at all.
hugs, sparrow
yup, i've got another stinking blood clot. the only thing i can figure is that once you find out something you're good at, one must stick to it.
first time i had a clot the tech goofed, said you have no clot. go away.
so i was sent to the orthopedist forest. they said let's take a laid back approach. maybe you have a baker's cyst
so they gave me a shot in my knee.
what were my symptoms one might ask? Red, hot tender to the touch, couldn't put heel on the ground,limping ......saying bad words in a made up language to save my delicate ears.
no it was not a bakers cyst. a few weeks later i was trying to do a simple household chore and it occurred to me that this could easily be my final earth day. talk about the pyramid game for "things that suck".
lots of difficulty breathing. off i went to the land of medical care.....this time they got in high gear. not only did this patient have a clot, she now had a plethora of clots.
and uh huh, you guessed it, blood clots in both the left and right lungs.
the RN leaned into my face as she hooked me up to the heart monitor.....all part of the welcome package when they check you into their 5 star hospital resort.
it was a tough time.......
then in 2010, got another clot, this time they said it's a superficial thrombosis, not as bad, serious of course, but they left me to my own outpatient devices.......both time i was treated initially with lovanox/heparin, then with coumadin/warfarin for a good long while.
both times the hematologist said it's better for this chronically ill patient w/autoimmune disorders to take aspirin daily vs. forever and ever amen blood thinners.
this time my leg became swollen and i tried to blame it on the delicious food i ate at a restaurant that day......but nay nay, after a few days i said well shoot. still puffy, swollen........better go in.
and whoops there it is, another clot. it's at the back of the knee in the popliteal vein........this time i am on xarelto. new doc, new methods.
currently taking 15 mg am and 15 mg pm. got a lighter cane w/a tripod to help with balance. wore mean tight butt kicking compression socks and when i took them off i had terrible cramps in my left foot.
also had cramps when i took a nap w/them on. not saying the socks did it, just saying that's when it happened.
made my appt today to see the hematologist on the 19th and i have a follow up w/my primary care on the 18th......think i should resched my follow up to after we find out what the hematologist says.
thinking this time they will say madam you have a blood disorder and you will need to take blood thinners for the rest of your planetary stay.
what else? well the xarelto makes me itch, can't take Benadryl....so we tried another anti histamine, didn't help, now I'm on the generic for Zyrtec. seems to help a little more, but we'll see.
the lovely folks at Xyrtec provided me with a one time free 30 pill supply of 20 mg tabs. my doc said he would save up 20 mg samples for me as well........the cost of xarelto is a lot lot lot higher than any other meds i'm on....
they pulled me off daily aspirin and took away the celebrex, so it protects me from death, not so much from pain in joints, soft tissue and the walking is a lot more unstable.......but hey what's life without a little risk or three?
i do take it all very seriously but today i need a break and some support too............not happy about having another stinking clot......who would be? nobody.....nobody at all.
hugs, sparrow
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I also noticed from your profile you have an autoimmune disease. Some autoimmune diseases can increase the risk of clotting, which you may already be aware so sorry if I'm telling you stuff you already know.
So welcome to the multi-clot club. Many of us here and on the PE board and while it's disappointing for sure, just know that we are a thriving bunch, living well, just plugging along. So hang in there!
It sounds like you have a lot going on, for sure. I'd definitely question the wisdom of staying on the Xarelto if you're having an allergic (itchy) reaction to it. There are other options and it might be worth talking to the hematologist about them to see what he/she thinks. It's a pain having to juggle both an anticoagulant and Zyrtec.
Keep us posted on how you are doing!
Now we'll see going forward. I see the hematologist later this month and I feel sure he will again look at all factors and see what should be done going forward.
Right now the biggest issue I'm trying to deal with is feeling sad. Having another clot knocks me down physically and when the physical issues rise higher, the spirit struggles to stay afloat. I've had breakthrough tears this week.........too alone and just having an overall hard time. I know it will pass, but today it feels like that's so far away.
The other conditions are in an uproar being off some of the meds......so it's just harder than usual. I'm used to hard and I'm used to working through things..........I wish I could go to Niceland, USA and sit in the Hug Parlor awhile.........until all the hugs soak in to this weary soul and tired skin..........night.
p.s. does DS let you know when people comment right now? curious cause i didn't get anything in my inbox. take care.......thanks for being there..........truly, thank you!
Oh and the email function at DS to let you know if someone responds to a post has been down for a while.
If you 're on warfarin or other anticoagulants, it's true that it can get tricky with treating some autoimmune/ inflammatory diseases especially when the disease is active. I know when my disease is active, it causes bleeding in my colon which gets more profound because of warfarin. So you really just need to be monitored by your doc.
I feel bad for people who have painful diseases and are limited in treatment options because of anticoagulants but I do think savvy docs will weigh the pros and cons and treat based on the immediate risk and needs. I mean sometimes you do have to take meds that typically are not recommended while on anticoagulants and just be closely watched.