I'm Carol West, and I am here to kick off World Thrombosis Day by sharing my journey as a blood clot survivor. It all started following surgery for a broken kneecap when I was unexpectedly diagnosed with a blood clot. Several blood clots, actually. Throughout my recovery, I not only survived, but turned my experience into participation in a clinical trial, patient advocacy and engagement in research projects. In my professional life, I serve as the CEO of a non-profit organization based in Canada. I’m very hopeful about patient advocacy and prioritizing the patient voice in research.

Today I’m here to discuss my blood clot story, recovery journey, what I wish I had known, how it affected my daily life and my engagement in research today. Ask me anything!

Proof: https://x.com/thrombosisday/status/1709589208082342078?s=20

Comments: 70 • Responses: 14  • Date: 

AcceptableForce144918 karma

Thanks for sharing this. What were the symptoms you felt after surgery that made you realize it could be a blood clot?

WorldThrombosisDay17 karma

The symptoms were localized to my legs. Because after surgery you are immobile for a while and you lose muscle mass and you are conscious about that and that limitation, but you also have the potential to see swelling and discoloration. I personally did not see any mass around the clot itself, but I did see swelling and discoloration in both legs - I had 2 DVTs. The other symptoms came sometime after the leg symptoms and turned out to be PE.

Getting-Married-Soon14 karma

It seems like having a blood clot had a profound effect on the course of your life- what drove you to dedicate so much of your life to advocacy? Someone at my work just had knee surgery- what advice would you give to them to make sure what happened to you doesn't happen to them?

WorldThrombosisDay12 karma

Congratulations on getting married soon. :) I have always been a volunteer with a variety of organizations. When this happened and the opportunity to participate in advocacy in this area was brought to me I was looking for a new volunteer assignment. I had some time to designate to a worthwhile cause and there is nothing that seemed more worthwhile to me. I found CanVECTOR a new medical research network that had a patient partner program within their program that seemed perfect to me. The experience with CanVCETOR has been very positive. All we want to do is to make a difference - even if it is a small one - and the CanVCETOR patient partner group progress that has been made, with research, is gratifying, and important and that's why I contribute. I want to make even a small difference and my experience can extend to a broader community. It is about community and moving beyond your experience to develop strategies and experiences with others that benefit a broad community. it is important to have a meaningful space for patients - it makes a difference in people wanting to share experiences and a difference in the contributions that researchers want to make.

For the knee surgery portion of your question, be sure to ask about anticoagulant therapy - were they given anticoagulants before or after surgery? Understand your anticoagulation status, and ask what you have been given/prescribed following surgery. Move as soon as you can - get moving. It may be painful or inconvenient but try to find a way to get moving. The last thing is to be sure to follow up with your surgeon and your family doctor. Keep your post-surgery appointments and if you have any symptoms in your legs (discoloration, swelling, pain), don't hesitate to seek help.

Business_Panda972812 karma

I am interested in participating in World Thrombosis Day, how do I get involved?

WorldThrombosisDay6 karma

You are just in time for World Thrombosis Day's 10th anniversary taking place on October 13. There are many different ways to become involved. There is a webinar next week on Mental Health, a Twitter/X #ClotChat, and a special patient event happening on Thursday. You can find details on how to participate in all of these activities on the WTD website here. You can also follow the campaign on social media - that is a great way to connect with other survivors.

LucysRevenge8 karma

My brother was just diagnosed with a PE a few days ago and I’m not sure the best way to support him. Do you have any advice?

WorldThrombosisDay6 karma

If you have knowledge, share it. Remove the mystery and fear as much as you can/ Especially with PE. People read about young, healthy people who get a PE from getting off a plane ride and I think we need to make people/patients confident of the remedies that are made to them, help with treatment options - and gather information for your brother. Sit and talk about what his expectations might be. Check-in with him - do the practical things - be helpful and go with him to appointments and heat the recommendations and treatment options. It isn't always possible if you aren't in the same location but there is a lot that can be done in terms of sharing knowledge. I do suggest trying to find an organization to become involved in, like WTD, but not when they are first diagnosed. When you are first diagnosed you have enough on your hands and there is enough on their minds so when the time is right, think about becoming engaged as a patient partner to contribute to the knowledge base and possibilities for better care and treatment of them.

GetOffMyLawn_6 karma

Hey mods, did you know there is a sub for blood clot survivors? /r/ClotSurvivors All survivors are welcome to join.

WorldThrombosisDay1 karma

Thank you for sharing this !

WorldThrombosisDay4 karma

Hi, I am Carol West from Canada and I a going to spend the next hour with you in conversation about the questions you have on blood clots! AMA!

LorelaiLinguini3 karma

What do you wish you would have known when you were first diagnosed?

WorldThrombosisDay3 karma

It is a long list. Everything from knowledge about anticoagulants to knowledge about basic physiology. Blood clots are mysterious things and whenever that happens, there is the potential to generate fear. Not really having a sense of what a PE was, or knowing what symptoms feel like, or a basic physiology of lung function, I would have wanted to know more about that. I also wanted to know how to respond when I was told blood clots can be dissolved into the body - what does that even mean? Tthere are a lot of things that I wish I had known at diagnosis to make it easier to understand and more clear to me.

AcceptableForce14493 karma

Also wondering -- were you ever tested afterward for any genetic risk factors or predisposition?

WorldThrombosisDay7 karma

The only good thing about having a blood clot as a result of surgery is that you've had a "provoked" clot. What this means is that it is clear to the people diagnosing you with the clot that it came from the surgery. I was not tested for any predisposition or genetic testing because my clot was a direct result of the surgery. I only had surgery on one knee, but had blood clots in both legs. The surgery was not a knee replacement but to repair a broken kneecap.

Southern_Ad86211 karma

how do blood clots form?

WorldThrombosisDay0 karma

I wish I knew! With all of the information on my condition and the management of the condition, how blood clots actually form is a mystery to me. I had surgery, I had immobility as a result which brings with it the risk of blood clots forming. I had them form and develop bilateral DVTs. How they actually form, honestly I don't have the answer. In my patient partner group, there are patients with a variety of origins of blood clots - there could be genetic factors and other considerations and I am not confident in answering how they are actually formed. There is good information on the World Thrombosis Day website that you can review here.

shayboy1 karma

OP, how do you keep your clotting to a minimum and what methods have you found to be best suited to keeping a low hematocrit? For me, it has been grapefruit juice and long duration steady state cardio, which has proven to be a dramatic change in RBC. I have also heard of citrus bergamot to help reduce arterial plaque.

WorldThrombosisDay0 karma

I admire you for identifying what works for you in your particular situation. I have not developed further blood clots, and apart from medication and following the advice of my physician, I don't do anything special in my life (with the exception of wearing compression socks when I fly). I live my life - I don't do anything special in terms of my lifestyle, which is modified to a certain extent, but with my choice of medication and the general indicators of health, and no reoccurrence, I don't have a strategy beyond that. I take my hat off to those who may be in a different situation and have figured out what they need to do for their best health.

Safe_Suit_3651 karma

What was your recovery journey like? What is one experience from that journey that was a challenge for you?

WorldThrombosisDay2 karma

My recovery journey was manageable - but manageable for a variety of reasons. One reason is that although I di travel a lot for my job, physical mobility was not part of it. My travel schedule was put on hold as I was recovering. I also found that the traditional ways such as physical therapy, weren't the magic bullet on my recovery. What did help me was working with a personal trainer that was my magic bullet. From a fitness perspective, it was what made a difference for me. The journey was long because it took weeks between the diagnosis of DVT and the PE - which is concerning. The one experience that was a challenge for me was asking for help. As an independent person, it is difficult to ask others to step in and help you. It could be as simple as transportation to a doctor's appointment or picking up prescriptions. The natural inclination to ask others to help was the most difficult portion of the recovery. My recovery journey involved a comfortable place to be and someone to support me - physically - such as walking down the hall or taking short walks. A dog doesn't hurt either during recovery (or a cat if that is your thing).

WorldThrombosisDay1 karma

Additionally, it never occurred to me that I might have to inject myself and that was a bit of a challenge when I expressed some disbelief that I might actually have to do it myself.

LorelaiLinguini1 karma

What is your advice for other survivors ? How can they get started in sharing their story and spreading awareness?

WorldThrombosisDay1 karma

What is your advice for other survivors ? How can they get started in sharing their story and spreading awareness?

Great question - The World Thrombosis Day campaign has several different ways that you can share your story. You can submit your story and the campaign will create a #MyClotStory that will be shared on social media. You can also change your profile picture to showcase that you are a survivor and share it as we lead up to World Thrombosis Day on October 13. Here are the links:

Share your story: https://www.worldthrombosisday.org/support-for-you/patient-stories/myclotstory/submit/

Create a profile badge: https://www.worldthrombosisday.org/take-action/create-a-profile-badge/

DeepRest_SodaPressed1 karma

What's Carol West's least favorite instrument?

The Thrombone..

WorldThrombosisDay1 karma

What's Carol West's least favorite instrument?

The Thrombone..

Lol - good one!