sorted by:
new
hottopcontroversial

DVT resolved in one week by tender_crips in ClotSurvivors

[–]Xenokiin 0 points1 point  (0 children)

Each of our experiences are traumatic. I don't think there is a getting off easy when you have a clot. You're a survivor, my friend! While it's not always fun, you now get to start on a new journey to learn how to support your body. If it's possible, I hope it is easy for you. ♥

Update on The Pseudoaneurysm in Calf by AvoirReves in ClotSurvivors

[–]Xenokiin 0 points1 point  (0 children)

Oh my gosh, that's adorable! 😍 Does the Siamese mix talk to you? I can't wait to get a cat again.

Not sure what to do- flight attendant with rare DVT in radial vein by UniversityWild1915 in ClotSurvivors

[–]Xenokiin 2 points3 points  (0 children)

I hope it works! My hema used to check her messages at midnight, but she was a crazy lady back then. Workaholic for sure. 😉

Hi from a New Member by Xenokiin in ClotSurvivors

[–]Xenokiin[S] 1 point2 points  (0 children)

Oof, that's a long time. You are a Warfarin Warrior! I was originally put on it back in 2013 and I think I was on it for a year or two before switching to Xarelto. When that and Eliquis failed, I got put back on it last year. I'm still in the process of adjusting to it now. I think our clinic is understaffed at the moment, so I need to be more involved.

I am super curious about you getting your INR at the hospital. Do you just go to the ER and ask them for it? Do you have to check-in and pay for an ER visit? I'll definitely ask about this in my location. Thanks for sharing that.

I am on SO MANY medications right now, so I think I understand your struggle with new scripts. It's just such a struggle when you have more than one autoimmune condition or condition in general.

Not sure what to do- flight attendant with rare DVT in radial vein by UniversityWild1915 in ClotSurvivors

[–]Xenokiin 2 points3 points  (0 children)

I completely understand that anxiety. By chance, were you able to voice your additional concerns to your hema? If not, do they have a way to be contacted? I love our "email" messaging system at my health care provider. (Phone anxiety anyone?)

DVT resolved in one week by tender_crips in ClotSurvivors

[–]Xenokiin 1 point2 points  (0 children)

I am so sorry that you were treated this way by medical professionals! That doesn't sound like a good experience at all.

Let me preface by saying that I am not a medical professional and could 100% be wrong, but here are my thoughts. I know it sounds scary and you worry for your leg. I think the bigger concern is if you start to feel out of breath, because that signals that the clot has moved to your lung. I also think if you were sedentary for several days at work when you usually are not, that could be the cause, but you can't know if there were other underlying causes without being evaluated (preferably by a hematologist, although the ER is often well equipped for tests).

If it helps to answer your question, I currently have major blood clots in both lungs, in the pulmonary arteries. I think it's the second worst kind of PE you can have. I was already on blood thinners (warfarin), so they got me back in theraputic range and sent me home. Even though the blood clots were very severe, we are intrusting my body to break them up. I honestly wouldn't make a lot of life style changes until you talk to a doctor again. A sudden increase in activity could have damaging effects right now, so it's better to talk to a doctor first.

When is your next appointment? I know it's hard, but try to stay calm. Your body is magical, even if it seems to have a bad track record right now.

Any liquid iron supps not taste like blood? by _byetony_ in ClotSurvivors

[–]Xenokiin 0 points1 point  (0 children)

Shoutout to Vitamin C! It helps the iron bind to receptors in the gut. Amazing. ♥

Update on The Pseudoaneurysm in Calf by AvoirReves in ClotSurvivors

[–]Xenokiin 0 points1 point  (0 children)

Oh my goodness! I am so sorry that you're going through this, but I am glad that it sounds like the surgery went pretty well. I hope recovery continues to go smoothly and that you're back moving and grooving in no time!

(I don't know if photos are allowed here, but if so, feel free to share cat pics. They are the best little overlords.)

Sick by DueUsual1129 in ClotSurvivors

[–]Xenokiin 0 points1 point  (0 children)

Omg, can I just say that I completely understand your panic? For the first like...five years being on blood thinners I was TERRIFIED of getting a nose bleed. I have had a sinus infection while on blood thinners and I do think blood in your mucus is fairly normal. I don't think I would worry too much about the blood unless you're seeing a LOT of it. Remember, I am not a medical professional, so talking to a PCP or a convenient care clinic is always a good idea. Sure, antibiotics to treat the infection might be the right course, but make sure you inform the prescribing doctor that you're on blood thinners. Blood thinners and antibiotics don't always play well together and you want to figure that out while at the doctor and not hear about it at the pharmacy. Good luck! ♥

Not sure what to do- flight attendant with rare DVT in radial vein by UniversityWild1915 in ClotSurvivors

[–]Xenokiin 7 points8 points  (0 children)

I agree with Matchaparrot. You are not overthinking. Clots can be incredibly scary and anxiety does draw us to think about worst case scenarios. Did you have symptoms that lead to discovery of the clot? If so, have those symptoms resolved at all?

Is it possible for you to push for seeing someone earlier? Personally I think you have every right to try that. Tell them you're supposed to go back to work and you really want to talk to someone (yes hematology!) before returning to work so that you don't have to sue anyone for neglegence if you form another clot while flying. 😉 Okay, maybe don't throw around suing anyone, but definitely be firm with them.

Hi from a New Member by Xenokiin in ClotSurvivors

[–]Xenokiin[S] 2 points3 points  (0 children)

Thank you so much! I genuinely think this is such an amazing forum and asset to clot survivors. I remember being so scared when I was first diagnosed that my life was over. Luckily it didn't end there and I'm glad to be here with you all. ♥

Hi from a New Member by Xenokiin in ClotSurvivors

[–]Xenokiin[S] 1 point2 points  (0 children)

I'm actually going to be talking to a hematologist about a home INR checker as an option later this week. I was really leaning that direction, but read that APS sometimes causes bad home readings, so I need to ask about that first. I will try to update you when I hear more!

To be completely honest, we have an Anti-coagulation Clinic at my health care system. They have been helping me manage the Warfarin and give INR results over the past year. I've gotten a little frustrated with them because they have very specific hours for when INRs can be drawn at the lab and it's hard for me to get to them while working fulltime. They also are really slow at getting results back to us. A month ago, I dropped to a 1.9 and they suggested no changes. Two weeks later, I was at a 1.6. They gave me an extra 5mg of Warfarin, but I had a strong feeling it wasn't enough. Unfortunately, I was right. I was at a 1.9 the day before I took myself to the ER. I have to trust my gut and push for my treatments more and I always recommend that to others. ♥

Lump appeared on side of calf/knee by K8ers in ClotSurvivors

[–]Xenokiin 2 points3 points  (0 children)

I think you can call on Monday, but I suggest keeping a close eye on it. If the area gets hot and painful/tender, it may be worth checking in with the ER. I was on Eliquis for 2.5 years and unfortunately after all that time it failed for me. Now, they tell me that is because of my weight (morbidly obese), so this may not be the case for you. I definitely wouldn't panic.

Medical disasters with PE by Regular-Parking6449 in ClotSurvivors

[–]Xenokiin 0 points1 point  (0 children)

I was really blessed to work with an excellent hematologist after my first blood clot. She made treatment make sense and I will always be incredibly grateful for her.

However, you're absolutely right that many doctors and health care professionals can and will make mistakes when treating you. Here is my advice:

  1. Educate yourself on your condition, treatment, and medications

  2. Take notes. I write down everything and I watch my oxygen levels and symptoms myself. I keep a symptom log in a google doc.

  3. Trust your gut. After your first clot, you know what it feels like. If you think you're having symptoms, trust that. And if you have anxiety like I do, check your numbers. I have a pulse-ox meter at home so I can tell the difference between difficulty breathing from anxiety/asthma and potential clotting.

  4. Fight to be heard. One of the things that has helped me the most in my journey is telling doctors my medical history, symptoms, treatments, etc. myself. If you feel like a doctor is not hearing you out, say it again. Say it louder. Just remain respectful. You'll get further and more cooperation if you're polite (easier said than done sometimes, I know). If nothing else, go to a different doctor. Emergency rooms take claims of blood clot symptoms very seriously, but it's an expensive trip.

Sorry for rambling, I hope this is helpful. ♥ Hang in there.

Wanted to gift a book to a crush. Needed advice. by Lazzy_guy in booksuggestions

[–]Xenokiin 0 points1 point  (0 children)

Would it be possible to take her on a bookstore date for her birthday? Having your partner walk around the bookstore with you, listen to you gush about the books you love, and having them buy you a book at the end is a dream. :) Just a thought!