CurseAvoider

If you follow the adventures of the Curse Avoider (the name is ironic), you know that I had a GP appointment today. I got the recommendation to the other hospital and they'll probably call me later this week or the next to make an appointment.

She took it seriously at least. I think I really need to easily convey just how disabling these symptoms are for me because they see me in front of them and think it's not that bad. When I mentioned that I try not to take long drives (e.g. to the other hospital) because I could have an episode behind the wheel and what do I do if I'm on the highway, she seemed to understand that something needs to be done.

I asked about a certificate also, mentioning that the hema didn't want to make me one and couldn't explain, and she said (they're both women fyi if the pronouns are messing up with your sequence of events, all my doctors are women actually) that they need to exhaust all medical possibilities first before doing that and then determining just how out of work this puts me. I said yeah that's fine, if it's the process it's the process. I just need them to take this seriously and understand that this is where I'm at, and I need their help on this. I'm the patient and every doctor tells me a PE is serious but I feel like nobody takes it seriously and I have to come up with my own treatment plan.

Anyway, I got the recommendation for the other hospital and hopefully move my case there because I can't with this shitty useless local hospital lol. I'm not expecting a miracle solution even though my family is because I think we've done all the tests and even if we knew the cause what would it change? I'm still at risk for clotting. Unless we can tell for sure this was caused by my 2021 covid vaccine or something (they pulled the moderna one because of this btw, but it happens in the first few weeks).

So that's the next step, is seeing a doctor at that hospital and seeing what they say. I basically have three options:

1. Keep taking the NOAC (that's your word of the day again from last thread, these are the new blood thinners that don't require any monitoring) but become disabled. This is what I'm doing rn.
2. Stop taking the blood thinners entirely, but no doctor recommends that -- not the hema and not my GP today. It goes contrary to my diagnosis which is unprovoked pulmonary embolism.
3. Go on the older thinners but they also come with their own issues (frequent monitoring, being careful about what you eat, and it's an all or nothing thinner so higher propensity for hemorrhages and difficulty to stop bleeding). This may be what the hospital recommends, I'll only know when I see them.

She also gave me some medication to help manage the symptoms, but it's not stuff you can take long-term, more like until I visit the hospital. I also have to try it and see if it helps, so I said okay sure.

If I'm disabled I'm disabled, I accept it. And if they figure they can safely do the older thinners then that's what it is, I accept it as well. I think. But I need solutions, I need them to follow through and not stick me in limbo where I have to call back in "a month" when they haven't changed anything and I've been having these issues for over 9 months lmao.

Solidarity to all my comrades. It's tough out there.

I'm seeing my GP (not actually in the UK, GP is just the word I learned) tomorrow and I hope she has better news. I'm not holding my breath because she doesn't know anything about pulmonary embolisms and always defers to the hematologist's advice. If she doesn't have anything to offer me at the very least I hope I can get a referral for the new hospital.

If you followed my last posts, last Thursday I went to see my hematologist and basically came out of it being ran in circles and with no clearer plan in mind. She said at the end "let me know in a month or so how it goes" how what goes?? She didn't say. I've had these episodes for 9 months now it's not gonna suddenly change lmao that's the definition of insanity, doing the same thing and expecting a different result. She basically politely threw me out of her office when I asked for a certificate. So I decided after that to get my case transferred to another hospital where they can hopefully be more available (she only works two days a week come on) and offer actual treatment options. And if my GP is just as useless I'll have to find another one that has experience with PEs. Which is absolutely not something I want to do because at this time anything is difficult to do and I really could do with less effort on my end. But that's how it is when you get sick in capitalism, you not only have to deal with the illness but you get punished for it. Complete strangers on the streets have been more helpful and understanding of my struggles than actual doctors.

I'm not one to usually get mad at other people but maybe I should. Maybe I should admit that she's utterly useless and can't do her job properly when you have a 30yo otherwise healthy patient who suddenly develops several embolisms. Maybe that's what it takes to show how debilitating my symptoms are right now because of the treatment.

I mean they ran a battery of tests when I got the PE including full blood work (the hospital originally ordered the wrong genetics test to give you an idea how stupid healthcare is around here), and including a full ultrasound of my leg arteries. Both came back squeaky clean, I should be in perfect health. When I started having the side effects (the nausea) we did even more tests, including another full blood test, and everything came back perfect again. So at this time the medical opinion is 99% sure this is caused by the medication.

Anyway my day started fine though I underslept a little, but at around noon time I got a nausea episode (I call them episodes now to underscore the seriousness). The only reason they're nausea episodes and not vomiting episodes is because I do everything in my physical power not to puke because even though nothing comes out it's like my body is trying to eject my lungs each time. And it's not just a one off, I can do the motions so to speak 3, 4, or even 5 times in a row. Like I've been sick before with stomach bugs and other stuff like that that makes you puke, and it was never as strong as it is with this shit. Sorry for talking about this so grossly lol but tbh after 9 months of feeling like this on the daily I just talk about it openly now.

I turned this into a wall of text again and removed a bunch of stuff lol. One way I thought of explaining it just now is like a stomach flu that will never go away. The triggers are a little bit different but it's otherwise very similar, random vomit attacks throughout the day and very sensitive triggers. And you get a certificate for the stomach flu lol. But the hematologist thinks apparently I can work with this and an employer will happily say "yes we will hire and pay you for 40 hours a week even though you only work 8 because you're always calling in sick" lmao. Like even just the daily commute would be torture for me with this -- I had one half day of work in December and it was impossible. I got an episode soon after arriving and even just typing a checklist on Word was impossible. I had to give the keyboard to my group and let them finish it without me while I was taking everything I had in my power not to start puking everywhere. Oh but the hematologist thinks it's not a "strong enough" reason for a certificate but she also won't give me another solution lmaoooo she can go fuck herself I'm so over this useless dipshit doctor. I'm giving one chance tomorrow to my GP but if I sense she doesn't get it or she's reluctant and I can't convince her, I'm switching. I'm done wasting my time and being nice, I need a fucking treatment plan that works OR they need to accept that I'm disabled and help me get the care I need. If they can't they don't deserve to keep taking my money.

Hello and welcome to another instalment of CurseAvoider diaries. Yes, the name is ironic. I actually got it from an online username generator and thought it was funny all things considered.

I have a dr friend, well, I've had them for a while actually, but I still have them, and I originally wanted to ask him about my hematologist's refusal to establish a certificate. If you missed that, check my posts on my profile.

Instead we mostly talked about treatment options and he cleared it up much better for me than the hematologist has done in months. And that's not even his specialty.

Basically, the options that I have would be as such:

1. Take anti-nausea medication to reduce or eliminate them (and stay on xarelto blood thinners).
2. go on the older blood thinners (vitamin K suppressants)
3. stop blood thinners entirely and monitor my D-dimer (clotting protein in the blood), then go back on blood thinners when needed.

Each one has their ups and downs though. For example he recommended a nausea medication but I looked into it and you shouldn't take it for more than 5 days because it can cause irreversible motor damage lmao. I have problems every day all day long so I can't be taking this long-term.

He said that if I was his patient this is something he would start looking into. And I think that's the keyword -- I need someone to actually consider these options seriously and offer it as a treatment, which means they have to follow up on it as well. Can't just send me home with blood thinners I have to monitor every week and say case closed. My hematologist kind of threw around these options as well, but as like something I could elect to do. But when I asked "but what is your professional medical advice?" she said "don't stop the medication, absolutely not".

I need to know that they're following my case and taking it seriously. All doctors (them included) tell me a PE is serious and needs to be taken seriously but I feel like they're just running me around in circles and don't want to take responsibility for treating me. I'm fine with continuing the disabling xarelto and other NOACs (that's your word of the day, by the end of this you will be an expert in pulmonary embolisms -- they're the "new" blood thinners on the market) BUT they have to recognize I'm disabled. It makes no sense to say "yes, you have nausea, yes it's caused by the treatment, yes you have to continue this treatment, but no we won't do anything about it"

I'm seeing my GP on Tuesday and will be getting her opinion as well. The problem with this GP is she doesn't know anything about PE and always asks the hetamologist before giving me advice. So basically useless, I can call the hematologist myself.

I'm going to look into getting my case transferred to another hospital that's apparently better at this type of stuff for a second opinion and to take up the treatment care. Also my hematologist only works on tue. and thurs. which is not helpful when I have an important question about my serious case on Friday morning. I can't do anything with this uselessness.

Then eventually also consider changing GPs and finding that has experience with PE because she can't help either. Basically until proven otherwise I need long-term care for this (even if it's just medication), I have a heightened risk of embolisms and that's what it is.

As was advised to me last time, the specialist refused to sign a certificate for my condition (i.e. a sick leave certificate). I'm not in the UK like the comrade is, but yeah. Same shit everywhere - you cost money and we'd rather put you through endless loops at your expense than give you what you need.

I went to see her earlier today and basically we spent 25 minutes talking about my condition and possible treatments and options. The discussion for that time was pretty much just the doctor agreeing with my assessment of my condition. It went like:

Me: "So my understanding is that there is a risk for another embolism if I stop the blood thinners"

Doctor: "exactly, yes, it's how you said"

We went over this risk, we went over the options (which is basically continuing the treatment long-term, that's the only option), we went over my symptoms of nausea and vomiting, and she agreed all the way and confirmed what I already thought. We also confirmed that it was caused by the blood thinners. But then in the last 5 minutes I ask for a certificate and suddenly she was like "ah but um it's not so easy and um" and I was like ?? we agree on the following:

1. The treatment causes me nausea and vomiting to the point that it makes me almost unable to leave the house and
2. It is her professional opinion that the treatment must continue because there is a real risk of developing another embolism AND
3. there is no other option but to continue the treatment.

But suddenly we can't put 2 and 2 together??

Like every medical professional I've seen underlines just how serious an embolism is but apparently I'm considered cured now, carry on. Should I stop taking my medication, go into anxiety over developing new embolisms every day of my life, develop them anyway (maybe after 3 months, maybe after 3 years, who knows)? Does that seem more reasonable?

She "explained" that a certificate is made bc of disease e.g. cancer, and once the disease is treated they go back to work. I was like okay but I'm still disabled lol. If the medication causes a disease, i.e. a disorder of structure or function in a human then surely you can diagnose that disorder that I'm currently feeling? I get that nausea doesn't sound "serious" but it's debilitating. Like yeah my life isn't threatened but if I can't operate normally (and I seriously can't hold down a job like this, any sort of effort such as leaving the house may trigger a day-long crisis. Doing that for even a day is unreasonable, much less for a long-term job).

I have two possibilities to explore currently, which is my psychiatrist (who witnessed how difficult it was for me Tuesday, like I had to stop at several points for minutes at a time during the session to do everything in my power not to puke), and my GP. I plan to call my GP tomorrow and get an apt to ask about a certificate and a recommendation for a second opinion. There's another hospital, though it's a bit out of the way, that apparently has a good hematology department. I'll insist to get a recommendation there, though I think I can probably just call for an apt directly. Regardless it's probably a good idea that my GP knows where this is at currently.

And then after that I'll see what else opens up and I'll start being a dick if I need to lol. Some bureaucrat can't decide what my day-to-day is like for me.

Using a throwaway to keep anonymous because I'm not ready to tie this to my main account yet, but you've probably seen me around.

Last year I suffered an unprovoked pulmonary embolism. If you don't know what that is it's blood clots in the lungs. I had several showing up on the scanner, with part of my lung being collapsed from non-usage. Thankfully, I had physical therapy and I'm doing great now in terms of lung capacity, back to pre-illness levels.

How to describe it, you basically go to bed feeling fine one night, and wake up the next day with searing pain in the ribs. I'm 30 (actually just turned 30 at the time it happened) and I understand not everyone gets pulmonary embolism as their 30th birthday gift lol, so that was worrying.

The treatment is simple, because some 10-15 years ago what's called new blood thinners came on the market. you just take a pill in the morning, it thins your blood and it dissolves the clots. Back in the day you'd have to get blood tests done every week to make sure the older blood thinners worked. You take the medication for 6 months and after that you should be fine.

Except my embolism was unprovoked, meaning that we have no idea what caused it. In that case the medication is extended "long-term", which is a nice way of saying "assume it's for life". It doesn't mean lifetime per say, it just means that we don't know when I can stop taking it.

For 9 months now I've had absolutely terrible nausea, as if my body was completely rejecting the medication. It can happen at any time of day for any reason, but is usually linked with physical effort (even any light physical effort like putting away groceries) or talking for more than 2 minutes. It can quickly transform into vomiting, though thankfully nothing comes out, but everything else is as if I was trying to puke my guts out.

It's difficult to convey how debilitating it is without writing a wall of text. This is the third time I'm rewriting this part lol. Just to give you an example, I used to go to the gym 3-4x a week before the PE. Because of the nausea, I can't go anymore. There's no point. Even if I feel fine before going, I know I will get sick on the way and even worse during the exercise. So what's the point of inflicting myself this kind of torture just to get half a workout in. That's the kind of decisions I have to make on the daily. Before we knew it was the medication side effect I thought maybe if I got back into a routine and physical exercise it would go away, but it didn't lol.

I had my specialist on the phone this morning to talk about the "new" medication I've been trying for a month (it didn't fix anything) and she basically said there's not much more she can do. We've tried all the medications because my case is quite specific in what it requires, but I have an apt with her on Thursday to talk about it more. And going on disability. If there's no solution (and I'm not expecting a miracle solution to magically make all of this go away), then I'll have to go on disability benefits. I mean, I've already stopped looking for jobs because what's the point? I know I can't handle one right now, I could barely handle going to the interview. I avoid long drives because it could be dangerous.

There is one silver living and it's that I was more of a homebody before that, so it doesn't completely upset my life. But I won't lie it does do something when you learn you can't do the stuff you could do before, instead of choosing not to do it before. that was a wall of text anyway lol, i tried.