Good Morning 🩷 new to the group....

[NorthernShel]

Hello! I've just been recently diagnosed with APS after a fall down concrete stairs broke my left fibula (lower leg) January 11/24.When I was able to get the fracture clinic 2 weeks later (I live in a small northern Ontario Canada small town and the clinic is 1hour and 15 minutes away, not easily done in winter!)

When I went to get the soft cast off and new one on the doctor sent me for an ultrasound because he suspected a blood clot in my broken leg & he was correct!

I was then put on Apixaban (I was already on Plavix due to a stroke in 2013 at the age of 41, the stroke was an unknown cause).

I was rushed by ambulance to the hospital January 30th because I had a pulmonary embolism. I had also a left subclavian venous aneurysm as well as a blood clot in my jugular!The doctors here have never seen my issues before, the nurses here call me the Unicorn 🦄 because my health issues are rare lol.

I should mention I had brain surgery February 28,2023 for a cavernous angioma in my right parietal lobe. I found out about the cavernoma in 2016 but late 2023 my health declined and after an mri it was shown my cavernoma had doubled in size causing my brain bleeds.

The doctor in the ER thought he'd run this special test after my PE,the blood test had to be sent away because out wee hospital isn't equipped to fo it & sure enough it came back I have APS .

After my Pulmonary embolism it was seen that the Apixaban wasn't working! .2% of the population it doesn't work for and I was in that percentile!

I was then put on Lovenox 70 mg so that's 2 needles in the belly twice a day that I had to do myself, which is horrific since I detest needles ~ but I did it!

The end of February I got to see Dr Gill in Sudbury who's a Hemotologist & Internal Medicine. He put me on 5mg of Warfarin as well as Lovenox x for 1 week then to my absolute delight I got to stop the Lovenox injections & I was then put on 75mg of Plavix to work with the Warfarin.

It's brutal having a broken leg and DVTs! I went yo the fracture clinic and I need to keep on the aircast/walking boot until April 8th my next appointment ~ it's been since January 11th but my break isn't healing as shown in my last xray

They put on the aircast/boot in case I had a medical emergency the fiberglass one would take too long g to take off whereas the boot is easy for ems to take off and good thing because my pulmonary embolism was a week after my blood clot was found in my leg.

I'm getting my INR done a few times a week at the lab at the hospital until I am stabilized with my inr at 2-3 I was told for me....

I'm so grateful I found this page no one here where I live understands what I'm going through....

It's a lot mentally to take in! How do ya'll handle it?

I too have gotten those sharp pains in my head at times as well as joint pain and it all was awoken by the fall down the concrete stairs!

Thanks for listening to my story & I look forward to reading all your stories and advice what works for you xo

[rankin1st]

Hi welcome NorthernShel so sorry you really seem to have gone through it! However glad you saw haematology and that your being correctly coagulated. I'm sure you'll get lots of great advice and support from the lovely members here, we have lots of diverse experiences that can be a real encouragement as you come to terms with the changes. All the best ☺️

[GinaD]

Regarding your broken leg: have you eliminated vitamin K foods as part of your warfarin protocol? Being told to do so is the usual warfarin advice. However! Vitamin K is essential to maintain bone health. Many cardiologists and rheumatologists now suggest to patients able to keep track of K intake, to adjust warfarin dosage to accommodate K intake. I eat 2-3 servings of leafy greens or prunes a day and, despite being on warfarin for 20+ years, my bone density is great for a 69 year old. Our disease can be quirky as blood flow issues can impact the entire body and produce symptoms that can be quite individualistic! Try to find a doctor experienced in treating APS. Even if the journey is long, you will find it worth the trip!

[NorthernShel in reply to GinaD]

Good Morning,My Hemotologist said to watch my vitamin K intake & I can have it just keep it consistent. I'm also on vitamin d3 3000ui a day to help seal it up!

I'm honestly shocked it hasn't healed before my brain surgery I was fit and even after I did my own rehabilitation (I fell through the cracks!) But walked 5-11 kms per day....

I haven't had a 'proper'cast on just the air boot so nothings pushing it back into place .....my dr in Sudbury (4 hrs south of me) seems knowledgeable but our doctor shortage is severe up here....

Thank you so much for your response 😊

[diane1428]

dreadful story. You’ve certainly been thru the mill. I fractured my knee and broke my tibia two years ago. Spent 14 weeks in a wheel chair. It was awful for me and my husband. Him especially as I found I’m not a good patient. But hey found out I could do wonderful wheelies. Warfarin is a good drug for keeping APS under control. Been taking it for 12 yrs now. My one has to be 3.5 sometimes I only need blood tests once a week. Others three times but hey I’m still here and I’m gonna be here for sometime yet. Best wishes and keep your chin up

[NorthernShel in reply to diane1428]

Aww thank you so much 💓 I appreciate your kindness & hoping you're doing well

[JanetL]

I am happy you have seemed to get things somewhat sorted out. I was diagnosed with my first heart attack in 1997. I was put on some medications for that until I started having TIA's. That is when I found out I have APS. I had a second heart attack in 2011 and had to have 3 stents put in one artery as it was almost completely collapsed. I was put on plavix but the hematologist was worried about warfarin so they have me taking two 81mg aspirin a day instead. I am on a blood pressure medication as well. I seem to be doing okay with the aspirin. If you ask your doctor about aspirin instead of warfarin , it could be an alternative for you. I do have to stay on plavix for life.