Hello, I am new here and was wondering if anyone had ever had post-phlebitic syndrome. I have had 2 seperate episodes of blood clots. The first time I had multiple bilateral pulmonary emboli, and the 2 they were in my lungs, abdomen, and a huge one that extended from my right knee to my right hip. I have been checked by the hematologist and have no clotting factor problems so they have chucked it up to the birth control patch. My problem now is I am in constant pain. Severe Pain. I was also going to post on the Pain board, but I was just wondering if anyone here had this trouble. thanks.
I came across this board while searching for information about DVT recovery ---- there is actually a sub-board on this site specifically addressing your questions. It has been helpful to me in knowing that my residual pains and concerns are not unique.
I consider myself very luck each day to have survived. I had a large DVT in the left leg and multiple clots in the lungs before I dragged myself into emergency over lunch hour one day. I had convinced myself that I was just dealing with fatigue and a pulled muscle or something equally silly.
I'm the type who can "handle anything" and I thought my swollen ankle and leg were going to make my next marathon road trip by car that weekend "inconvenient" so I finally had it checked out. I now can sit or stand for about 1/2 hour before needing to move. I was a week in the hospital and out of work for two months. Both legs ache most days and the lungs tell me when I've pushed it too hard.
Coumadin is rat poison, but this is one rat that is very happy to have it saving my life.
Check out the other board and good luck with your recovery. Perhaps our daily pains are reminders of how lucky we are to be feeling anything. And maybe our lives are meant to be lived in something other than high gear - at 49 I think I'm beginning to understand.
Thanks for the info P, I knkow what you mean about feeling lucky. I had my blood clots in my lungs for over a month. Which caused me to have an infarction in my lower lobe. I to was in the hospital but I was there 2 weeks and in ICU for a week. I am very very lucky to be alive. because i also went into flash pulmonary edema while in the hospital. I have been out of work for over a year now. Some days I can barely get off the couch. I am only 26 and have a 3 year old little girl so it sucks but at least i am alive and able to watch her grow up.
was that your first episodes of blood clots? They put me on coumadin after the first clots then 9 months later i was able to come off of it,. THen six weeks later is when i landed back in the hospital for almost 3 weeks with even more clots. These are the ones that really caused the long term effects.
Its nice to know there are other people out there who feel like me. Don't get me wrong I would not wish these problems or the pain on my worst enemy, but, I am alive. And I thank GOD for that every day.
When you are looking at the main Blood Disorders list - go to the search area and type in DVT recovery to get to the sub-board. I was searching to see if my residual leg pains and fatigue were normal. At least I know that it is normal now.
This was my first incident, although I've been told that I stand a 50% chance of a repeat. I have always been a traveler - last year it was 32 hours from airport to airport - this year, and the apparent cause, was a 15 hour road trip by car that was actually almost a full week in the car with the 15 hours on both ends.
After this first six months on coumadin, they plan on doing the extensive blood tests to see if I have any of the other factors, since I'm not a high risk by nature - no family history, not a smoker, etc ------I just travel, and apparently don't stop often enough.
I'm glad to see that your attitude is on the right side. Just as a thought, from a naturapathic view the mental cause of blood clots is "a blockage in the flow of joy". I know for myself, the challenges/changes in my job for the past year definitely is in alignment with that. As a result, I spent a lot of time working on a change of view while I was away from work.
I still have some crazy hours as an event coordinator - but my life willl not be so much about work anymore!
I am glad you are getting on with your life. It is easy to get depressed and just sit and watch TV. Keep active and that will help keep your mind off of it. The problem with coumadin is that it can cause you to bleed easy. You have to take it, to prevent blood clots from returning, so be cautious about what you are doing.
In fact, doing things will help prevent the return of blood clots.
My sister-in-law had blood clots and she has kept real busy. All of her life she has been busy and nothing stops her. She is in her 70's.
I want to say thanks to all of you for your support. I just wrote a long reply and my wonderful computer lost it. SO I will say it again later. But I am just glad that I have found somewhere where people are going through the same thing that I am. I had a really bad day today. I got my denial for my long term disability from my work. Which means I lose my insurance effective immediately. And since I have had all these problems I can't get private insurance. One of my medications alone is almost $4000 a month so what fun. What the disability people don't understand is that I would return to work if I could. I miss it so bad it hurts. But my doctors will not allow me to return to work. Some days I can't even walk to the mailbox let alone work all day. I am a nurse so I am on my feet the entire shift. It just wouldn't work. Anyway. I will stop babbling about my problems. I just wanted to say thank you and vent for a bit. Thanks for everyones help.