... Just recently diagnosed and the dr told me "that he is surprised I haven't had an event already"! I'm only 51 and have a 14 yr old son, am I can't get over the anxiety/stress that I could drop over at anytime due to a blood clot. Thank you for any support, I need it:-)
Protein S Deficiency - How do you get over your fear that you could develop a blood clot at anytime?
- 5 May 2015 by Lilyann13
- 12 June 2015
- anxiety, protein s deficiency, fear, blood clot, blood, diagnosis
Added 5 May 2015:
My mother has it, my1st cousin and my uncle passed away from a blood clot before we found out this was genetic. Also, at what age do I have my son tested for those of you who have children?
The time to have your son tested is now. Childhood stroke is possible. No need to panic or be anxious, because that can't change anything for the good and adding that stress to you or your son's life isn't good either. Our information says you should be on heparin or warfarin (Coumadin) to prevent clots. Are you? These can be nuisance drugs in that their levels often need monitoring, but they should help you have far less anxiety over getting a clot. No therapy is perfect and your disorder left untreated is a problem. The outcome is usually good with treatment, but symptoms may return.
Plan to see your Dr. and/or whoever is your son's Dr. tomorrow and get him tested and both of you on therapy if the Dr(s). agree. I know far less about either of you than your Drs. do; my advice comes from researching your deficiency. Please read the information at this link, especially the Potential Complications and the Prevention. Read only what applies to Protein S:
Write back if you have questions after reading this.
Try to focus on things you like to ease any anxiety. Distraction when you're anxious is invaluable. Keep focused on anything you can enjoy and that pushes anxious thoughts to the back burner of your mind. You will have to keep refocusing when the anxiety or stress tries to come back. If telling your son about the deficiency will cause him stress or anxiety, don't tell him tonight and let him sleep. Tomorrow's soon enough. If you look worked up, your son will know something's wrong. Try not to do that to him. Can you exercise and get rid of some energy? That may well help you to sleep tonight.
Think about how we are all in danger of getting into a car or pedestrian accident every day, yet we don't worry ourselves, we accept that life has risks. I suspect there are more such accidents than protein S deficiency catastrophes! Just because you can get a clot doesn't mean you won't recover. My mother has had them 2 yrs. in a row and is now on warfarin. She doesn't live in fear for her life. Nothing permanent is damaged.
Stents can be placed at the top of your leg, I would think the left one since it goes back up to your heart and lungs, or elsewhere since clots often start somewhere in your legs. The stents stop the clot from getting to the heart or lungs. Your Dr. will suggest this at some point, usually after the 2nd clot in a year's time. Perhaps sooner with your diagnosis. You can also research this deficiency on the internet. You might feel less stressed when you know more about this.
For instance, my Mom had a huge clot at the entrance to her lungs for many weeks. Her symptom was difficulty breathing on and off. Does that sound like instant death? No, and she got to stay in the cardiac care area which is VERY quiet and 1 person to a room and the room was very upscale. She really enjoyed her stay, which is highly unusual. I couldn't believe the wonderful conditions of the room after my miserable conditions for another ailment that required quiet and rest. Clots threaten hearts and you may also get a fancy upscale room someday!
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