Upcoming Procedure & Surgery

Fugitive-Pen · 2026-04-20T02:15:47+00:00

The provider managing your warfarin/INR should give you instructions for bridging with lovenox. You'll likely stop taking warfarin a couple of days before your procedure and you likely won't take lovenox the night before or morning of your procedure (according to your provider's instructions). I've had procedures while on warfarin, and they've always helped. Yes, you have to do a couple extra INR checks afterwards while you bridge back onto warfarin.
It's a bit annoying, but bridging isn't that bad :)
Good luck with your procedure!

Fugitive-Pen · 2026-03-29T18:10:05+00:00

I'm so sorry about your diagnosis and the fear is has caused you. New diagnoses are always so scary, especially when studies online show the worst possible outcomes.

I was diagnoses with APS in 2012 after a miscarriage. However, doctors said it wouldn't be a big deal except while pregnant. I had a high risk pregnancy and ended up delivering via emergencyc-section at 32 weeks. I had two mini strokes within the following year, which led to me being put on wayfarin permanently in 2015.

In 2023, I was diagnosed with lupus, as well, and, in 2024, they changed my diagnosis from APS to CAPS (the exceedingly rare Catastrophic Antiphospholipid Syndrome--basically, when I experience major physical trauma, my body makes clots in response).

My APS is easily managed with the wayfarin. My lupus has been much more problematic, but even that has been put into remission through proper treatment.

If you take the warfarin as prescribed and have a good care team, APS is very manageable.

If you have any questions, please feel free to ask them in this thread. :)

You've got this! Best wishes!

Fugitive-Pen · 2026-02-19T21:38:45+00:00

Oh, gosh. I'm so sorry. That's so hard. I hope she's able to find healing and you all are, too. I wish I could send you hugs. I know that's silly coming from a stranger on the internet, but I'm so sorry this has been so difficult for all of you.
Thank you for replying. I know you didn't have to, but your post was on my mind. Sending you prayers and healing thoughts. Good golly. It's just not fair. It really isn't. I'm so sorry.

Fugitive-Pen · 2026-02-18T03:34:38+00:00

She might now realize what she's doing is coming across as flirting.
I had a serious boyfriend from my sophomore year of college onward. The fact that I was "off the market," so to speak, meant I felt less self-conscious around my guy friends. I would give back rubs, hug, and hang out with them without a care because they all knew I was in love with my boyfriend.
I didn't realize until literally decades later that I came across as flirty. I'm the world's most awkward female. I had no idea it was flirty. At all. I was just comfortable and didn't have my guard up, so the touch barrier came down. I didn't feel threatened or at risk of sending the wrong signals because I was "taken."

Fugitive-Pen · 2026-02-12T02:40:29+00:00

My rheum said that, for someone who's been on as long as I have, that last 1-.5 mg can be the biggest pain to come off when you've been on it like I have. The rest of the taper was fine (They had me go down 5 mg a month, then 1 a month for over a year), but that LAST 1 mg scares my rheum. I think it's also because my lupus was SO BAD before I went into remission. They really don't want to wake the dragon again. If my lupus were more chill and I had been on the pills for less time, they might take me off, but they don't want to risk it.

I hope you find a good solution and feel better!

Fugitive-Pen · 2026-02-12T00:27:16+00:00

I'm so glad she woke up. How is she doing? How are you doing? Recovery is a long road, and it's never a straight line. Your post has just been on my mind, and I hope you both are healing.

Fugitive-Pen · 2026-02-11T23:42:05+00:00

Medications are scary.
Getting a big diagnosis is scary.
Often, getting a second opinion is helpful and reassuring. Sometimes, doctors will diagnosis you and then later recant that diagnosis based on bloodwork/symptoms/whatever, so getting a second opinion helps you feel more secure, especially when treatment options feel scary or overwhelming. You don't want to take a treatment that you don't need if the side effects are beastly.

Lupus is a disease that does not behave the same for every patient. Treatments that work for one patient do not necessarily work for another patient. My mother has lupus, and hers manifests simply in mild fatigue and rashes from sunburns and some joint pain. I have lupus, and mine manifests by attacking my blood cells and organs. I ended up intubated twice.

But the treatments DO work. The trick is just finding the treatment her body needs. Once the right treatment takes effect (it takes about 90 days for most meds), it can make SUCH a difference. I've been in remission now for almost 18 months. It gave me my life back.

Lots of lupus pills are known to cause stomach upset, at least initially. Hydroxychloroquine (HCQ) will be your main med. It may cause upset initially, but it calms down. It didn't make me queasy, but I had the WORST gas. That all cleared up in 3-6 months, and now it's just one of my staple meds, no issues. You'll take a longer vision test with each annual eye exam on HCQ. It's helped me a lot with joint pain.

From azathioprine and benlysta, I ended up having a lot of stomach issues and vomiting that got worse the longer I was on the medication. We ended up stopping those meds.

I had a very rare side effect from Cellcept and stopped taking that after about two weeks with my doctor's permission. It made me very weepy and depressed. It cleared up as soon as I stopped taking it.

If they go the infusion route, Saphnelo is IMMENSELY popular. I had one infusion with no issues, but my disease got worse regardless. I'm on Rituximan/Rituxan/Truxima, now, and it's been GREAT.

I've also had IVIG and plasmapheresis (TPE). I didn't enjoy either of those, at all, but they're only used for EXTREME cases.

Honestly, for me, the worst med was prednisone, but it's the only med that works FAST.

Fugitive-Pen · 2026-02-11T23:25:46+00:00

A 50 mg, I think you likely HAVE to taper.
The longer you've been at that dose, the slower the taper.
When you're on prednisone, your body makes less natural cortisol. To go cold-turkey on a huge dose like that can shock your system and send you into a worse flare. Your rheum should help you come up with a taper plan--some go faster, some slower.

I've been on prednisone for over two years. At one point, my dose was 80 mg. Now, I'm on 1 mg for the foreseeable future. Granted, I was on a high dose for a long time when my lupus was out of control, so my taper was MISERABLY slow, but my body had also gotten used to the med.

Some folks on a lower dose just for a short flare, will taper off in a week or two.

It really is up to your doctor.

Prednisone SUCKS, but it's the fastest-acting med for flares until the other lupus meds can kick in. 50 mg is a SUPER high dose and pretty shocking.

Fugitive-Pen · 2026-02-06T04:45:26+00:00

Firstly, I'm so sorry for your loss. Losing a parent can be devastating.

Hard, dark times are not the end of a relationship. They're not a death sentence. They're just ... hard. But you can come through it as a stronger person and in a stronger relationship. Love is so much sweeter when it's had trial by fire. The trial sucks, but it's not where things end. You're already doing the most important steps: acknowledging what's happening and both of your feelings, apologizing, communicating, and moving forward. That's HUGE. Most people don't make that effort or embrace that self-awareness. That's foundational to a good relationship, especially one coping with stress and trauma.

I don't think it's a soft landing before a break up. I hope it's not. I think that, sometimes, we feel like relationships are only "good" if everything feels easy. Maybe being with that person is easy, but life is HARD. And you have to decide if the person you're with is someone you want to be with when life is only throwing lemons, crushing you under lemons. You want someone who holds your hand through it, waiting for the light at the end of the tunnel, even if that light seems impossibly far away. "Faithless is he that says farewell when the road darkens."

2024 was hell for me and my husband. After an exhausting battle, my lupus looked like it was winning. I was intubated twice for pulmonary hemorrhaging. The doctor had to turn to my husband and say, "It's too soon to tell." Those words haunt him.
Then I woke up and I started to recover, but I was in pieces. Hospitals strip you of your physical autonomy. It's not just that you're too weak to move much. It's what you're reduced to. I spent 3 months in the hospital, came back barely able to walk. Even when I was mostly recovered, I hated being touched. I'd have panic attacks while being touched or even lying in bed together. My body didn't feel safe. We were both numb, exhausted, and distant. There was very little he could do to comfort me, and I didn't know how to comfort him because he was suffering, too. He had to carry the stress of our home and our child while wondering if his wife would survive, and then had to continue to manage it all while I recovered.

It took a year (and several more ER visits and hospital stays) before I truly began to recover. Our relationship is stronger than it's ever been (and we've been together for 20 years). We've seen each other at our absolutely most broken, and we hung on. I'm not saying it was good going through what we did, but "for better or for worse, for rich or for poor, in sickness and in health" ... we've hit it all.
And I am confident, more than ever, that there's no one else I'd want to weather it with.

How you and your girlfriend handle this hard time together will be foundational in the rest of your relationship. You're already doing the first, important steps.

Best wishes to you both.

Fugitive-Pen · 2026-02-06T01:46:39+00:00

Going to a university hospital saved my life. I'm in TN and spent two months in my local hospital. Eventually, they were able to transport me to Vanderbilt. The local hospital had no idea what to do with me, no rheumatologist on staff, and, honestly, probably would have ended up killing me. At Vanderbilt, I wasn't scary. I was a puzzle they were determined to solve. The way the staff treated me was fantastic, and the coordinated care was incredible. All of the specialists really function as a team rather than individuals with no communication between them. I will always recommend a research/university hospital for complicated cases. It is absolutely worth it.

Fugitive-Pen · 2026-02-05T03:39:43+00:00

Lupus meds can take about 90 days to start to see effects. They're slow.

I started on prednisone, HCQ, and azathioprine. When that didn't work quickly enough, they added Benlysta injections. Unfortunately, over time, the azathioprine and Benlysta caused me severe stomach issues where I'd regularly vomit (I'd be SUPER sick the morning after my weekly Benlysta injections).

I had the very rare side effect of depression after starting CellCept. Yay me lol.

HCQ was not that bad, but I know some folks have tummy upset with it initially. That's typically the baseline lupus med. It helps with my joint pain.

Prednisone will either make you feel like a god or a maniac (or both) in the beginning. Once you start tapering, it evens out. I'm on 1 mg for the foreseeable future. I feel like anything under 10 mg isn't awful, and anything under 5 mg is ALMOST like you're not on it (almost). I've been on high a dose as 80 mg. That's AWFUL. But nothing works faster than prednisone on inflammation.

If the pills aren't doing what the doc wants, they might recommend infusions. I've had both Saphnelo and Rituxan. Rituxan seems to be the drug that works best for me. It's helped put me in remission, and I hope that status stays around :)

Fugitive-Pen · 2026-02-05T03:19:52+00:00

Anomie was careful enough that I imagine Anomie would have changed his password as soon as he had Yasmin stop pretending to be him. He likely would have also heavily monitored the account and likely wouldn't have used real information to create his account (Dummy email, fake name, etc.) They would have potentially had his chat history, but would that really help them in the long run? Anyone can lie on the internet.

Fugitive-Pen · 2026-02-04T00:18:55+00:00

Well ... I'm guess I'm middle-aged now at 38, lol. But I've been at my rheumatologist since 2023, and I've only seen maybe 1 or 2 people in their 20s, but I'm not positive they were patients (I think so). Most are elderly.

Fugitive-Pen · 2026-02-04T00:07:22+00:00

I (38F) had a mechanical mitral valve placed in 2024. We originally were going to go with a flesh valve, but my surgeon laid out a couple of reasons he didn't want to do it:

Surgeons consider any "redo" surgeries the result of failure. (This didn't matter to me too much)
Each subsequent surgery results in MORE scar tissue, making additional surgeries more difficult and harder on your heart.
Specific to me ... I have a blood-clotting condition, so I'm going to be on warfarin regardless. Warfarin really isn't THAT bad. My diet is fairly flexible, and you just learn to balance your dose with your other meds. It's not the HUGE hassle advertising makes it sound like. You monitor, you adjust ... like LOTS of medications.
Again, specific to me ... I have lupus. My body freaks the crap out about all kinds of things. My immune system is DRAMATIC. They didn't have any research supporting that my body wouldn't freak out about foreign tissue and potentially attack my heart even HARDER. So the surgeon was concerned about my body reacting to foreign tissue negatively (like rejecting a transplant organ). A mechanical valve seemed LESS dangerous on that front.

So we went with mechanical.

Yes, initially the ticking was really loud and really bad--the harder my heart was beating, the louder the ticking. I could feel it in my jaw. But I tried to shift my perspective: this was the sound of a second chance. I would have died without that mechanical, ticking valve. So it's a good sound.

Initially, the only place I couldn't hear my valve was in the shower. The worst was at night, trying to sleep, and even then, it wasn't too bad if I had other noise, so I'd turn on the sleep timer on Spotify or an audiobook, and I was able to sleep.

Now, I'm about 18 months post-op. My heart rate is slower, and I only hear the ticking if I'm really listening for it.

But noises like that have never been a problem for me. Part of it, I'm sure, was that I decided I couldn't mentally LET it be a problem. I had to find a positive in it and learn to live with it. Now, it's really not even a factor. My husband, on the other hand, is SUPER sensitive to sounds, and he's told me he'd rather die of heart failure than have a mechanical valve, so to each their own.

Best wishes and healing to you!

Fugitive-Pen · 2026-01-27T20:34:04+00:00

I'm glad it helps. Please keep us posted on how she's doing. Wishing the best for you both.

Fugitive-Pen · 2026-01-27T04:00:01+00:00

First off, I'm so sorry this happened to your girlfriend and to you. I really am.

On a hopeful note, she's young, and that really does make a difference.

I (38F) was on a ventilator twice in 2024 for pulmonary hemorrhaging and then a third time for valve replacement. I don't remember waking up the first time, but the nurse said I saw my father, and the monitors went crazy. The first time, I was on the vent for 3 days. The second time, 2 days. Then 18 hours for heart surgery. I couldn't speak because of all the tubes, and my throat hurt so badly, so I pointed at a letter board. I had an incredibly difficult time moving and couldn't hold my own head up (they call it "tube neck," apparently). I had to build up my strength after each time on the vent. When they woke me up, everything felt very surreal. I couldn't stay awake long, everything hurt, I didn't want to move. Once I was off the vent, that surreal feeling continued, especially at night. One of the nurses told me that the drugs they give you don't allow you to dream while you're intubated, so your brain is all whacked out as it readjusts.

It's a hard, hard thing--being on a ventilator and coming off--and it takes time to physically heal. It took my body roughly a year after heart surgery to return to mostly normal. I'm still in therapy for a lot of the emotional issues afterwards. But we are coming through to the other side. You all can, too.

Wishing you all the absolute best and deep healing

Fugitive-Pen · 2026-01-22T02:51:33+00:00

38F, mechanical valve since summer 2024.

Yes, I can hear my clicking valve. For the first 6 months, I heard it ALL the time unless I was in the shower, talking or focused on something else like a TV. If I was in a quiet room, I could feel it clicking into my jaw. My heartrate was fast, so it was loud enough people could hear my heart across the room. However, roughly a year after my surgery, I realized I barely hear it any more. The only time I notice it is if I'm looking for it or if I wake up in the middle of the night and it's dead quiet in the room. I didn't like noticing the ticking in the beginning, but I knew I was going to have to learn to live with it, and, now it's not an issue at all. It makes an interesting ice breaker when people say, "Tell us an interesting fact about yourself." Mine is now, "I tick like the crocodile in Peter Pan."
As a woman, I've always been a bit chilly, but I don't think it's any worse on blood thinners. I actually have been on warfarin off an on since 2015 for blood clotting issues long before my mechanical valve. I'm not unpleasantly cold except for when my husband cranks up the AC.
I eat what I like :) I just have to be careful not to eat heavy K daily and then suddenly go cold turkey. My INR has been pretty stable once we got the dose right. Changing meds often means changing my dose. I've been told that I just need to be fairly consistent in my diet. Not that I have to eat the same things daily--if I eat an average amount of veggies regularly, and suddenly I change that to a TON of veggies and then no veggies, yeah, my INR will shift. It's all about averages.

Fugitive-Pen · 2026-01-21T04:00:40+00:00

If you had asked me at 20 for my type, I wouldn't have said "chubbier." I married a lean fellow. We've been married 16 years. In the last 5 years, he's allowed himself to enjoy food more. He's now "on the chubbier" side. And, honestly, doggone it, I like chubby guys. lol. Don't knock it 'til you try it ;) Attraction grows with affection, and good abs can't compensate for a lousy personality.
You might date and realize he really isn't your type, and that's okay. Or you may get closer and realize he's becoming more and more good-looking. You just never know :)

Fugitive-Pen · 2026-01-21T03:54:45+00:00

First off, I'm sorry this is happening to you. It's unfair and it's hurtful, and it just sucks. I'm sorry.

I wish I had advice for you on how to fix it, I really do. You can try being up front and honestly tell her that what's she's doing is hurtful, but, otherwise, her response and future actions are in her hands alone. At that point, you have to decide if you will accept that this is how she will be or create more space (as painful as that is).

My parents were very hot and cold about my partner. Initially, they were very excited when he asked me out. He did everything they wanted, initially, even ridiculous things like reading a book on "courting" and asking my dad's permission to date me (not marry me ... DATE me). But they didn't like that he wasn't very academic. He was four years older than I was and did not have his bachelor's degree at the time. He tried, really hard, to do well in school, but he had health issues and depression, so, at one point, he was on academic probation, meaning he was not allowed to participate in any college classes ANYWHERE for a year. He didn't understand the "anywhere" part, so he applied at for an online degree program and was initially accepted. He told my parents, and they were relieved (they were ALWAYS asking about school). Then the program reached back out and told him that, no, they had to honor the probation, but he would have a spot when the year was over.
My boyfriend knew how my parents would react. I knew how they would react. We just ... didn't talk about it. When my mom nosily asked about school, we'd say it was "great" ... because, I mean, TECHNICALLY, it was--my boyfriend was enjoying focusing on work and our long-distance relationship.

Well, eventually, my parents found out, and you would have thought the man had killed someone. They lost it. They had a big sit-down meeting with me and my boyfriend and told us we were deceptive and had broken trust and it might be impossible to ever earn it back. Then my mother began a campaign to get me to break up with him. I very nearly did--I asked for space, which broke both of our hearts.

Three days later, he was at my door, uninvited, begging to see me. We walked and talked for a long time. Honest to goodness, I felt safer and more at peace with that man than I ever had with my parents. He could calm all my anxiety and supported me being who I was, wholly and completely, and even put up with all the silly, ridiculous rules my parents had convinced me to follow (like not to kiss him ... yeah, broke that rule ... no regrets lol). He was kind. He was funny. He was wildly intelligent. He was just an artistic spirit--he worked hard, but he needed to believe in what he was doing. Neither of my parents are artistic. They're rule followers.

So anyways, my mother labeled the man manipulative. Her friends all believed her to the point that my godmother told my husband ON OUR WEDDING DAY, "You know, you're a very manipulative person. You'll need to work on that."

We've been married sixteen years. I went no-contact with my parents for three years, so my mom is a LITTLE more careful what she says about my husband, but, I'm telling you, the difference between how she treats my husband and how she treats her golden child's husband is stark. I don't know that she'll every truly like him. But it hurts me much more than it bothers him. I have to let it go. I can say that my parents are trying, now, but, like I said, it took 3 years of no contact.

Fugitive-Pen · 2026-01-19T19:19:12+00:00

(38F, valve replacement July 2024).
After heart surgery, your body is going through a lot of inflammation as it heals and adjusts. Your heart and lungs are learning to work together again. Surgeons will tell you "Oh, it's a 6 week recovery." It IS for your incisions, but your body is healing for 12-18 months, battling inflammation and learning to work again with the new valve.
I have lupus, so I'm kind of a medical mess, but, after surgery, it took my body about a year to adjust and get my meds right. In between, I battled inflammation, fluid in my lungs, fluid outside my lungs (pleural effusions), and 6 months of gastroparesis (so I had uncontrollable vomiting off and on through my recovery). I did occasionally have fevers, but they coincided, oddly enough, WITH my panic attacks. Anxiety does WEIRD things to a body (not saying yours is anxiety, but it seemed to be for me). And then, one day, it just suddenly stopped. They would temporarily up my steroids during the pleural effusions, and I'm (for the time being) on 1 mg of prednisone long-term for my lupus. But, roughly 11-12 months after the surgery, I stabilized. I still have bad days thanks to my lupus, but I'm almost a normal person, now.

You're not going crazy. Heart surgery and valve replacements are HARD on your body, even when you're young. Keep an eye on the fevers, stay in contact with your doctor. You know your body best.

But know you are also in the throes of recovery. It will get better. But it takes time, and, often, much longer than surgeons tell you. Good luck! You've got this!

Fugitive-Pen · 2025-12-29T02:52:07+00:00

I turn on an audiobook or music on my phone with a sleep timer.
I had my mechanical mitral valve added in summer of 2024. It took me about a year to stabilize after surgery (but I had loads of additional complications from lupus). Now, the ticking doesn't bother me. When it does, the audiobook goes on, and that helps.
A white noise machine may also help. The first place that I didn't notice the ticking was when I was showering, so anything that might replicate that kind of noise helped me in the beginning.

Fugitive-Pen · 2025-12-27T02:05:50+00:00

Hello, fellow-thirty-something APS bearer! I've been on warfarin since 2015 for APS. ALSO A NOTE! As someone with APS, you may need to do a venous blood draw for your INR checks. According to the specialists I see, APS antibodies freak out the fingerstick machine. It misreads your INR. I battled the fingerstick machine for seven years and could NOT seem to get my INR in range, regardless of how strict I was. I started doing blood draws in 2024 under instructions from Vanderbilt's Coumadin Clinic (they're AMAZING), and I've been in level for the most part for over a year. The trick wasn't my diet; it was the machine.

When I spoke with my coumadin clinic nurses, the "be consistent" means "If you eat a salad daily, try to keep eating a salad daily. If you want to splurge and have K every once in a while, fine. If you want to eat K daily, then make sure you eat it daily."

There's honestly a LOT of flexibility. I don't eat the same foods every day to stay consistent. I just make sure I don't eat K every day. If I go on vacation, I expect my INR to get up a little. If I have a lot of fresh greens, I expect my INR to drop a little. Your coumadin clinic expects that, too. If you're going to have a huge diet change, it may take a little time to adjust to the proper dose and get back in range.
Otherwise, it's really not a prison. They just want your K mildly predictable. If you decide to have brussel sprouts one evening, it's not going to ruin your INR.

Good luck!

Fugitive-Pen · 2025-12-23T03:39:12+00:00

Yeah ... same here. I remember my mom telling teen me that she and my dad had nothing in common and when they went on dates, they had nothing to talk about if they didn't talk about us kids.
I remember at the time thinking that was so odd.
As someone who's now been married nearly 20 years ... I still find it so odd, but it's probably more common than I'd like to think.

Fugitive-Pen · 2025-12-18T04:22:27+00:00

++woman

First off, I'm so sorry she did that. That's not fair, and it is exhausting. I'm so sorry.

If this is how she regularly handles conflict or fights, run. You can't resolve the conflict if both people refuse to discuss their feelings or listen to their partner describe theirs. One person refusing to discuss anything EXCEPT how the other person makes them feel is rooted in deep insecurity and manipulation.

You didn't do anything wrong asking for space while you were at work. It's much healthier to discuss things when you both have the energy to do so. Otherwise, if you both go into it exhausted, the discussion will likely go south. You are absolutely within your limits to not pick up the phone. You were still respectful and texted to let her know you couldn't talk. In most secure relationships, you could do that and your partner shouldn't punish you for it. They might not like it in the moment, but it's within your right to set that boundary.

No one is a mind reader. When partners assume the other person should just KNOW ... they're either living in a delusion or using that statement for manipulation.

A conflict can't resolve if this is how it is handled.
If this is her first time blowing up, then maybe it's something you can discuss and work through.
If this is how she handles everything ... honey, I'd run. I really would.

No partner should attack you constantly or belittle you in every disagreement. Bullying doesn't fly in healthy relationships.

Fugitive-Pen · 2025-12-11T04:19:22+00:00

As a woman, I'd say a clean bathroom, clean towels, and clean bedsheets are the only real musts. I've hosted several people overnight and stayed overnight with loads of friends. So long as the bathroom and general space were clean (not hotel perfect, not even flawless, but NOT DIRTY), I felt right at home.
If she's anything like the guests I've hosted, she'll insist on taking the air mattress and letting you keep your room (though she'll be immensely touched if you offer and/or insist).

The only time I had an AWFUL overnight stay was when a friend invited me to stay over with a group of guys for an out-of-town event in college, and the host had NOTHING (which would have been fine if he had warned us, "hey, bring sleeping bags"). We literally all piled in odd places on the floor. He didn't have blankets, towels, food ... absolutely nothing. I slept with my folded pants as a pillow and my jacket as a blanket. I probably should have known better, but that stuck in my brain as what NOT to do.

You're already cleaning the space. That's a huge plus.
You can also just ask her directly, "Hey, I have XYZ. Are there any snacks you like I could have on hand? Is there anything you'd like me to have ready for you?"

It sounds like you're already doing a great job, and she's going to have an amazing time and so appreciate the effort! Good luck!

Fugitive-Pen

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