So I'm back to work now. Have been since the week my Doctor and Physical Therapist gave me the thumbs up. Turns out that a position at Stanford Graduate School of Business opened up so I applied, interviewed and believe it or not GOT THE JOB! I'm now on month 8 and just got switched over to a permanent employee. The people and environment I work for is amazing. I not going to act like everyday has been the easiest to get through but ever since to my medical problems nothing really seems to phase me as much.
Hi Blake! Thank you so much for sharing your experience with Paget Schroetters! I am newly diagnosed (July 2nd) and found this diagnosis to be quite a surprise. I'm a healthy, active, 26 year old female and was caught completely off guard by this. I started a blog as well sharing my experiences... I feel like one of the best things that can come of this is sharing my knowledge (I'm a nurse) of the symptoms of blood clots. Hopefully others can catch it early and maybe it will save some lives.
ReplyDeleteI have a few questions for you if you don't mind sharing... what medications were you on for this? What were the recommendations for preventing a recurrence in the future? Did you have the clot removed or did the docs just let your body reabsorb it? Pretty much your whole hospital stay/medical treatment interests me. Would love to exchange our experiences with this! You're the only other person I have found with this diagnosis!
Keep up the good recovery and positive outlook!
Hey K.
ReplyDeleteSorry for the delayed response.
First off I totally agree with you that the best thing that can come of this is to share our stories and hope that they can self diagnose blood clots before it's too late.
Now To answer your question-
1. they tried putting me on coumadin but I was highly sensitive to it so we decided on Lovenox. injection. i think on was one 40mg twice a day for 6 monnths post surgery.Lovenox has a shorter half live which is another good thing because your blood will be back to normal after a couple days of stopping.
2.Prevention - No reaching while turning head and inhaling. Or reaching really far up or in any direction.
3. I did have the clot surgically removed. The surgery was short and painless. The part that sucked was that in order to do surgery that to thicken my blood up. This meant i had to get about 5 bags a blood plasma via IV. I then had an allergic reaction to it , but that's another story.
What caused yours? how long was your recovery?
ReplyDeleteHope all is well
Wow! Did you have surgery after the clot was removed to prevent recurrence?
ReplyDeleteMine was caused by swimming laps in my pool. I just felt like I pulled a muscle in my shoulder and kind of kicked myself for not stretching before swimming. But when I got out of the pool my arm was discolored. I gave it an hour and my veins became distended and my arm swelled slightly. So my mom and I went to the ER "just to make sure it's not a clot." I was admitted, on coumadin/lovenox. They removed the clot later that week and I was on coumadin for 3 months. Then just in November I had surgery to prevent a recurrence. They went in right along my collar bone and cut off a few muscles and tendons that had been clamping off my subclavian vein during activity. Not gonna lie, it hurt like hell for a few weeks. But now I'm back to work and feel great with activity! My only complaint is there is still some numbness/tenderness around the surgical site because they had to manipulate the nerve to get to the muscles and tendons. Supposedly it's all temporary, but it's hanging on pretty strong 3 months later.
I met 2 other girls who had this as well... neither is doing as well as it sounds like you and I are... the one didn't go to the ER for several months and now they can't remove the clot because of the damage it has done to the vein, so she's facing permanent loss in feeling and decrease in function of that arm. The other girl is only 18 and the clot traveled to her lungs- which is incredibly rare coming from the shoulder. She, luckily, is okay now, but she's trying to get a diagnosis to take steps for prevention. Crazy.
Hi! I just found this blog and am so thankful. I'm and 18 year old female from Upper Michigan. I was diagnosed with Paget-S February 23, after having a blood clot in early December. Before the clot, i was an extremely healthy and active high school senior; Varsity Cheerleader and a Varsity Golfer. I found out shortly after being diagnosed that i will be having my top rib removed in full. Im very nervous, and scared for my surgery March 23. Has anybody had this surgery? Has anyone had swelling in the chest area above the affected area? Do you think i will be healed by golf season (April)? What should i be prepared for? Does the recovery hurt a lot? How long until i can go back to my normal active routine?
ReplyDeleteHi ,
DeleteHow did you surgery go ? Would love to have an update.
Surgery went great! Had some problems with lymphatic fluid, but nothing serious. I working out now and back to normal life. Thanks for asking.
DeleteWould you mind me asking where you went for treatment? We live in Michigan and My son is 13 and very active, his shoulder was hurting and his arm turned purple and was swollen. No clot was found and the swelling went away but they did notice compression of the vein when the arm is up. They mentioned having a top rib removed but we don't know if we should see a pediatric surgeon or a vascular dr?
ReplyDelete