When Care means zero fucks

Just trying to regain my mental and physical health back

Hey all!  So I announced on my Discord that I was taking a break from social media and interactions in general.  It’s because I had an extremely bad nosebleed and had to go to the ER and had a pretty bad experience.  It took me a while to process it, but I had to write about it.  I at first was writing about it for my personal journal, but then decided that this had to go up on my blog.  I don’t like sharing a lot of the negative side of my recovery, but this just seemed important to share.  I don’t think it’s too bad, but slight trigger warning for blood and bad hospital experiences.  This is what I wrote.

It fucking sucked.  Last week sucked.  I hated it so much.  I had a nosebleed last week Monday on my way to my UCSF appointments.  It was pure hell.

It happened in the car.  Space was in the front talking to Aroma, alt-metal music blaring through the speakers.  I was in the back, all cozy in my cream-knit cardigan sipping my coffee I had rushed to make.  We all woke up late and had about 10 minutes to rush out the door to make sure we arrived at UCSF on time.  I thought the jolt of coffee would help me perk up to tackle the two medical appointments we had in The City, but in all honesty, it was probably the culprit that started the nosebleed.  I knew it was going to be a long day.  I’ve also been a bit sick the days prior; I believed I wrote about it.  I kept coughing and hacking up stuff, not too serious, but definitely uncomfortable.  Grabbing the tissues, I felt a wetness in my right nostril.  I wiped the tissue around and slightly in my right nostril and blew lightly.  That’s when I felt the wetness increase by double.  I checked the tissue and it was a messy shade of glistening red.

I spent the whole car ride to UCSF nursing my nose and trying to stop the bleeding.  Normally, I’m pretty good at stopping the bleeding (I have a history of nosebleeds since I was a kid and have frequented the ER for them quite a bit of times), but I’ve been taking blood thinners and even when we got ice to help stop the bleeding, the clot was too wet to stay in my nose to stop the bleeding and I always had to cough it up, starting up the bleeding cycle again.  I lost so much blood, went through 4 boxes of tissue, and was throwing up blood from the blood I was swallowing that was trickling down my throat.  I tried my hardest to stop the bleeding because I knew a trip to the ER would be horrible.  But in the end I had no choice.  I felt a horrific headache and could feel my body failing me.  I had to go.  And yes, it was horrible.

Seeing these fliers makes me laugh

I really hate it that UCSF and other health facilities use the word “Care”.  You receive care, they say.  No the fuck we don’t.  We receive TREATMENT.  We are treated and then shamed or made to feel stupid if we disagree or dare let our feelings be known.  I was put in room 1 and a flurry of ER nurses and doctors worked to stop the bleeding.  They asked me questions, shoved needles into both my wrists to set the I.V.'s so they can inject whatever medication into me, which I hated and have been sore and bruised for a week now. (I usually ask for the I.V.'s to be injected in a less painful spot, but I wasn't asked and it happened in a flash.) I get it; I’m high risk, but maybe some acknowledgement, a sorry it was rough, would have been nice?  And then without my consent, they shoved a NASAL ROCKET up my right nostril (it’s as terrible as it sounds), a cylindrical fibrous device that looks to me twice as long as my finger and twice as fat as my nostril opening.  As they shoved it in, all I knew was searing pain. I screamed and my reflexes kicked in as I tried to pull away.  They held me still and I kept screaming; they told me they had to stop the bleeding.  Again, yes, I understand.  We need to stop the bleeding.  I need to be strong again as I always am and endure.  But again, maybe a heads up? Maybe a sorry, some acknowledgement of this pain would have been nice.  It would have shown me someone at least cared about the ordeal I was going through.  The bleeding did stop.  They stayed for another minute to monitor, then the loud waspy cloud of people all buzzed out of the room no doubt to provide “care” to another patient in need and it was just me, Space and a silent nurse in the corner, her eyes glued to the medical monitor.  And mind you, as all this was happening, I could hear another patient not far from me also non stop streaming.  I could only wonder.  Space tried to console me, but I was not in a place to be consoled.  I felt violated and very unsafe.  I was glad the bleeding had stopped, but already with the pain in my nose that has a stretched nostril twice it’s normal size, my whole face that is throbbing, the building pressure in my right eye of the nasal rocked pressing hard against it, my pounding screaming headache that is still getting worse, my weakness all over that I haven’t felt since the days after my transplant, and the throbbing pain in my wrists, I could already feel very similar feelings from my early days of when I woke up after transplant.

I’m not ready to talk about everything that happened during those days, the days right after my transplant, but just know they were really bad. I spoke to a Psychiatrist about a month after transplant and she diagnosed me with PTSD with developed triggered neuroticism.  I don’t want to talk about the details right now since I’m still working through all this with my therapist, but I developed the PTSD, not from the transplant and my recovery, but  due to the care I received from a number of “care” people who were in fact, not really that caring.  I don’t want to paint all the caregivers I worked with with one brush.  Many of the people, nurses, doctors, were stellar with my physical medical treatment as well as providing good empathy and care.  But it only takes one, but in my case, several individuals to really fuck you over.  I’ve had many hard times in my life, but I’m a very strong fucking person. Anyone close to me will tell you I am.  I persevere, I endure, I keep going.  It’s how I overcame my depressive episode as a teen, dropping out of school, going back to school, the loss of my brother, how I pulled myself out of poverty, and so many other challenges.  But through all that, I never developed anything as severe as PTSD.  The transplant and dealing with the pain of it, the extremely hard recovery, feeling like I was on fire on 3 different levels on every cell in my body, feeling like I was being pulled by a 100lbs ball and chain bolted to my chest, and other pains I don’t really want to describe, all this I could normally endure.  It’s because I knew it was temporary and life would be better one step at a time.  I had hope and knew I could overcome this.  But this wasn’t the only thing I was dealing with.  I was also dealing with, let’s just call it an incident with very toxic caregivers who did not mean me well.  THIS incident just broke me.  It pushed me over the edge.  It made it so just being in a hospital setting could set off triggers I didn’t want to feel.

So because of this, I’m now rocking this new and fun PTSD and am feeling it begin to trigger in the ER.  The bleeding has stopped and all my mind could think about is going home.  The bleeding is done and I want to go home, thank you.  In the comfort of my own bed, with my cats, my games, my friends, get on with the recovery of my surgery, live my life thank you very much.  I was in and out of napping and could hear the ER doctor come in telling Space that the lung transplant team wanted me to stay the night for observation and testing and my mind just laughed.  No fucking way.  Not over a nosebleed.  I understand I’m “high risk,” but I’ve had so many nosebleeds over my life and I know how they end up and how to take care of them.  When I came in and told them I’ve thrown up blood, that it is going down my throat, they made me open my mouth making me cough and choke on my own blood only to say, oh yeah, there’s blood in her throat.  Like I just told you that?  And they wanted to put scopes and shit down my throat to confirm what I’ve been telling them to my physical and mental detriment.  I knew if I stayed the night, it would be nonsense and they would conclude what I have already said and such a waste of time.  And to top it off, my unsafe meter was at a level 9.  I didn’t feel safe at all. Nothing they did really made me feel like they cared about what I was going through or how I was feeling and I was triggered so hard.  No sirs, I’m not staying. (And don't get me wrong, it's not like I would never stay overnight at a hospital. I would if I felt my life was definitely in danger. I would endure. I just didn't feel like the nosebleed warranted me staying overnight over my fragile mental state.)

I told the ER doctor, no I’m not staying overnight.  She re-explained what the lung transplant doctors had said like I didn’t understand and I remained firm and said, no I’m not staying the night.  I’m going home.  I tried to explain to her I have PTSD from staying here from my lung/heart transplant.  I opened up, even though I was scared to, to explain how it was hard to be here and I’m feeling unsafe and that I really want to go home.  And then she looked at me and said, “Even if you choke on your own blood and die?” Umm . . . that's an extreme thing to say. What the fuck?  Why would she say that?  I’m not stupid.  This statement is designed to make you feel stupid and is very manipulative.  How is a person supposed to answer that question? It was hard for me, but I stood my ground and I just looked at her and said, “Yes.” And she rolled her eyes and was like oooookay.  Well fuck you too?  So yeah, unsafe level at 9.5.  Not only was she extremely unprofessional, but she clearly demonstrated she gave zero fucks about my mental state.  This is really fabulous “care.”

The lung transplant team doctors then visited me.  When they do this, there is a main doctor, kinda the head honcho who is running the conversation.  Then there is a secondary doctor who is more there for support and then 2-3 fellows, who are doctors in training usually silent and taking notes.  In my case, there was the main doctor, the support doctor and two fellows.  I always feel like a specimen when they come in like this, especially with the silent fellows taking notes, nodding, and observing me.

The doctor came in all bubbly, telling me with a touch of zeal, yes we’ll have to admit you because we need to make observations so I can make a care plan for you, it’s just for one night blah blah blah.  And just a side note, they have told me "just one more night" before in the hospital and it is NEVER just one more night.  The last time they said that, I was there for 5 more nights because they had to do more testing and the techs were busy so I had to wait on this person and that person and this and that, sooooo, I don’t trust it.  After she spoke, I just told her no, I’m not staying.  She looked taken aback, she again re-explained all the reasons and I said no, shaking my head and telling her I can’t.  I became vulnerable again and tried to explain my PTSD and how I can feel it being triggered.  I told her if I stay, I’m going to have an episode, I’m going to LOSE IT and will be in a mental state where they won’t be able to treat me.  She basically ignores what I said and reiterates the “care” she wants to provide me and why they are doing it again.  I tell her no again and even try to meet her halfway and say, “I can come in as an outpatient tomorrow to get the testing done.  I can come everyday even to get whatever done, I just don’t want to stay overnight.”  She shakes her head and starts to look upset, saying she can’t approve my decision and that it goes against her recommendation and “care plan”.  We go back and forth on this like 5 times, each time her bringing up me going against HER care plan. In my head, I’m like fuck your care plan.  I don’t care.  It’s not MY care plan.  Me losing my shit isn’t care.

Our conversation got so dumb that the 2nd doctor intervened and said, “Hey, is there anything we can provide you that would make it easier for you?  A support person?  Someone who can talk to you and be with you?” Her words touched me and made tears stream down my face.  At least SOMEONE was listening to me?  I felt like if the main doctor was just as empathetic, listened to what I was saying and actually cared, maybe I would be ok with staying?  Literally, I just needed to feel safer; I just needed people to listen to me and not do a bunch of shit without my consent and acknowledge any pain they were enduring on me.  The 2nd doctor was very nice, but with the main doctor just staring at me like she was saying, hurry the fuck up, get over your dumb shit and just stay here so I can write my glorious, important care plan and go home, it just wasn’t enough.  Through tears, I remained firm in saying no, I’m going home. 

Realizing I’ve made up my mind, the main doctor then just shakes her head and says in a disappointed voice, “It would have been easier.  Easier on everyone if you just stayed.” Then she left with her entourage just shaking her head.  Ummm, why would you say that?  How is that helpful for me, the patient?  Oh, it isn’t.  It’s a statement designed to shame me.  To make me feel bad.  That’s so fantastic to do to a patient, already physically and mentally in shambles, who has confessed to you that they’re suffering from a mental/emotional ailment.  And to be frank, it’s giving Asian mom (if you know, you know).  And it’s a very weird thing to say.  She’s basically saying they all now have to do more work because I want to go home.  Why would you tell a patient this? As a teacher, would I tell this to a student? Hey, because of your behavior, you're causing all of us more work. How is shaming helpful?  How is this CARE?  The answer is, it simply isn’t.  I was kinda shocked she said that.  How are you supposed to respond to that?  I just took some deep breaths and was glad they left.  I just focused on going home.  I really didn’t need to be here and was so glad once I was discharged. And I've been home for over a week and guess what? I'm doing fine with my recovery. Did not need to stay in the hospital to get whatever done.

I need UCSF to reevaluate what the word Care means

These comments that cut down patients’ mental health are not uncommon.  We’ve all experienced coldness in health facilities before; it’s a big reason why we don’t want to go.  There’s something missing from the “care” they like to toot around on their horns, like to print in their flashy posters, like to promote with decals on their beige hospital walls of friendly smiling doctors and healthy looking families with the big word CARE or THRIVE or whatever marketing word.  There’s something missing when you’re actually a patient and are experiencing in real time being a patient, and news flash, the thing that is missing IS care.  I know I’m not the only one who has experienced something like this and I know I’m not the only one who feels the same.  And until UCSF addresses this issue and provides robust mental health training to its doctors and staff, I will never feel adequately safe being a patient with them.  And before people come at me and list all the ways UCSF addresses mental health, I'm telling you it's not enough. Do better. And it’s not just patients!  Staying at UCSF, I’ve witnessed doctors berate nurses, nurses rushing around in fear trying not to anger some provider (provider is the word they use for those who issue orders like doctors or nurse practitioners).  I had one nurse in the cardiac ICU who was at first very nice to me and I would say provided me good care, but was issued orders to have me produce certain outcomes that wasn’t happening with me and over time, she became more cold, strict and commanding.  I wasn’t mad at her, though it did make my interactions with her not easy, because I observed her and she looked so stressed and worried, no doubt she was receiving a lot of pressure from above.  This is just another example of how we speak to each other can really wreck our mental health and trickle down and affect the care they are trying to provide. This is so important. Language matters. The way we speak to each other matters, especially when you're in a place where you're the most vulnerable.

Found happiness in making a loco moco and Hawaiian mac for the first time

Again, I want to reiterate that not everyone at UCSF was horrible.  There were so many nurses, staff and providers at UCSF who made me feel safe, provided wonderful care and even brought me joy and I’m so grateful.  But even so, it’s just not OK that there are still those employed by UCSF who use very harmful, and at times, manipulative, coercive, language to their patients who are in a physically and emotionally vulnerable state, who are ignoring their patient's mental health and cries for help as if it doesn’t matter. As a patient, we kinda have no choice but to trust we will not only have our physical ailments treated, but also will be provided with care, dignity, and empathy. Being aware of and making purposeful change in culture and language is not too much to ask. This small act can also not only improve the quality of patients' lives, but also save patients' lives. Mental health matters.

I also made braised short ribs

with Filipino pan de sal

Anyways, that’s what had happened that made me take a break from Twitch and social media.  It took me 12 days to adequately reflect on the experience enough to write about it.  But this has been such a weight and I just need to get it out.  My elder millennial brain keeps telling me that what I’m writing is stupid.  Toughen up, this is so trivial, listen to what the doctors are telling you, you idiot, they performed a lung/heart transplant on you, be more grateful, who cares if they talk to you like that, no one is going to care, blah blah blah.  But I don’t know.  I feel like this matters.  This really matters.  Every time I read their posters that say they provide care.  Care, care, care.  I just shake my head.  That’s not my experience.  I don’t feel safe when I’m in their facilities.  They need to stop using that word if they can’t live up to it.  They need to know they are causing harm and a lot of it.  At least to me and the staff I witnessed, and I’m sure I’m not the only one.  I’m going to get in contact with Patient Relations and let them know my experience.  I’ll let y’all know how that goes.  I’m sure it will go great (insert side eye emoji).

My return to Twitch was derailed because of this experience, but I’m in a better place right now to start planning it again.  I’m hoping in the next week or two.  I do miss streaming and gaming and I MUST finish Final Fantasy Rebirth.  That will be my first focus.  I put that game on hold because I knew I had to go back to the hospital next year and I didn’t want to stop playing Rebirth suddenly.  I’m so excited and I can’t wait to see everyone.

Miyu contemplating life

I know I usually write about the bright spots of my recovery, but I’m sure you can imagine there are not so bright spots and I’m sorry if this is distressing for anyone.  Know that I’m doing ok, it all comes in waves, ups and downs.  I feel good mostly because I am in therapy working through all these feelings and I also have a wonderful support system at home, my loved ones, my friends, and all my Twitch friends and community.  Y’all lift me up crazy and I love you all so much.  Thank you for walking this journey with me through good times, great progress, bumps, having shit being rocketed up my nose, throwing up blood, and some fun Final Fantasy VII streams with Banh at night.  Thank you for being here.  It definitely makes me feel less alone in this endeavor.  And I hope you are also doing ok, managing what you need to.  Hopefully we can talk on stream because I definitely miss you.

And I'm still taking donations to reach my GoFundMe goal to pay for living and medical expenses as I am not really working. Every little bit really helps and is so appreciated. And even you just reading my blog means so much to me. Thanks so much!

💙Please donate what you can and share the link to your community 💙 GoFundMe - Heart/Lung Transplant Fund