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Turning Something Sad Into Something Beautiful

Wednesday, August 8, 2012

After my medical post I was flooded with so many e-mails sharing similar medical horror stories that I've only managed to get through them all just recently. Of all the tears and pain and mind-blowing medical incompetence, though, Saudade's story trumps them all. (Not that this is a contest, of course.) As horrific as her experience was, though, I honestly think you need to read it. All of you. You need to know how you might be treated some day, and you need to know what lengths you may have to go to, for yourself or your loved ones, just to get the care you literally need to survive.

In a nutshell, Saudade was belittled, berated, and ignored while she bled internally in the ER for six solid hours. Her ER nurses apparently thought she was just another hysterical pregnant girl, and so claimed that each of the *three separate machines* showing her rapidly dropping pulse were faulty, until Saudade simply had no pulse at all.  She was moments away from death before anyone - ANYONE - took her pain seriously. 

She has had the surreal experience of a nurse breaking down into tears as she rushed Saudade into emergency surgery, and a doctor pounding on her chest screaming, "breathe, dammit!" - which I honestly thought only happened in movies. She nearly died, several times over. She did lose her child. She was on a respirator for days. And two years later, it all happened again. 

Saudade's corresponding emotional journey is also something I thing you should see, because while it has equal horrors of cruel and clueless "counselors," at least it has a happier ending. It's taken nine years, but Suadade's finally stopped blaming and punishing herself, and  - here's where I'm going to cry again - she's started drawing again. 

And out of so much pain, there blooms something so, so beautiful:


Saudade wrote to thank me for helping her feel brave enough to finally share her story. I think we should thank her for taking this leap, and for allowing us to see the dangers we must guard against in our health care system. If I've taken anything away from her story and the countless others you readers have shared, it's that you have to trust yourself more than your doctors, and you should never let anyone tell you you're fine when you know you are not. Sadly, playing nice just isn't an option any more when it comes to your health. Make someone listen. Don't stop. Look out for your loved ones. And whatever you do, whatever people say, please, don't blame yourself. There are good health care workers out there, so let's make stories like Saudade's a thing of the past, together.

Go here to read Saudade's story. Then forward it to your mom, and your sister, and your doctor. Get the word out. Then find someone with a story like Saudade's, give them a hug, and remind them it's not their fault. I bet we'll be surprised by how many of them need it.

Posted by Jen at 5:02 AM Labels:

42 comments:

  1. her story made me cry. She is so strong. Thank you for helping her share her story.

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  2. Wow - Heartbreaking and yet so inspiring. I cannot wait to see more of her drawings. Thank you for sharing her story.

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  3. Thank you for sharing Saudade's story. I just came back here after reading it, and I'm thankful you can share it, after your own fears with doctors.
    It's given me strength to redouble my efforts to get my own gunocological issues dealt with asap, and not to let myself be talked down to by the doctors.
    thank you also for having this website, Epbot. Reading it has shown me that there is another person just like me out there, and that it's ok to be inot all the wonderful things that bring us so much joy, even if other people might not understand why (the donald cuties would get me made fun of even now.)
    thank you.

    Liz from Ontario Canada.

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  4. I read these stories and my heart breaks for every person who has an experience like this.

    I've been resisting the urge to comment about this since you first posted your story, but I think there's an important reality that is not being discussed here in the midst of the personal stories. There are structural inequalities in these terrible medical experiences. Women, people of color, people with lower income and/or education, who are overweight, not able-bodied, or otherwise subjugated are much more likely to be belittled and mistreated than the average patient. Doctors, nurses, and our medical system exist within these larger systems of inequality and the medical setting is a place where the silent discrimination becomes visible.

    There is also a reason that people from subjugated groups are more likely to experience these problems: we are less likely to "push back" because we are powerfully socialized to conform and behave "appropriately."

    Owning these inequalities is important in learning to overcome them, both as providers and patients. Taking these personal stories as a cohesive whole is important, although it may feel overwhelming sometimes.

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  5. Thanks Jen for bringing this to our attention - things like this should never happen but sadly do. I am continuously pleasantly surprised by how supportive the Epbot readers are, in a world where most blogs are followed by folks just wanting to troll and share their negativity.

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  6. Haha wow I think you have created a small stampede. I love you. I love Epbot. In the most non-stalkerish, heartfelt way!

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  7. Thank you for sharing this story. It's such a shame that doctors and nurses don't always take a patients complaints seriously - as you said, we know ourselves, and should be heard and respected. It's also a shame that we blame ourselves for things that are beyond our control. :(
    Thank you again!

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  8. Wow, just freakin wow! This WILL be forwarded to everyone I know.

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  9. Bravo to Saudade for sharing her story. I'm so sorry that happened to her twice. Her drawing is beautiful, I was immediately drawn to the dog in the woman's hand and there is a delicasy to the line drawing.

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  10. Well said Jen, thank you for sharing!

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  11. I think I may love her.

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  12. I almost cried just reading your post, Jen. I'll have to save Saudade's story for when I am not a work. Her artwork is so, so beautiful. It feels sad and hopeful at the same time.

    Hugs to you Saudade. Thank you for being brave and sharing. I would love to see more of your artwork.

    Andrea

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  13. It is a sad and terrible thing. I wish that such things didn't happen in today's world, but clearly, they do.

    However, as an emergency nurse, I have to request that all stories like this come with the caveat that NOT ALL PLACES AND HEALTHCARE OPERATE THIS WAY. Many of us give up more than you could ever imagine to help people in times of terrible stress, and our hearts go out to victims like this whenever we hear of it.

    Healthcare is frightening and never as instantaneous as we'd like (yes, lab and radiology results actually do take time to come back and be interpreted), but the next time one of you has to come to an emergency department, I hope it's mine- because this is unacceptable and I will do my damn best to make sure that you are safe while we wait for news together.

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  14. Jen, thank you for sharing this. And thanks to Saudade for having the courage to share such a terrible personal experience. I was absolutely horrified as I read her story. Appalled. I'm about to apply for a nursing program, and I am determined to never, ever have a part in a story like this. Not only is it important for patients to take control, to speak up, and to make sure that things like this never happen again, but for health care providers to be aware that this kind of thing is happening and to do everything in our power to make it stop. Thanks for making me aware on both those fronts.

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  15. While my story isn't nearly as traumatic it has its own fear and embarrassment. I went in for a routine OB/GYN appointment and he "saw" a "speck" as he described it. He referred me to another OB/GYN for a second opinion. I went in and saw this next male doctor who did a biopsy with no warning. Not even mentioning that it would be painful and that it would lead to bleeding. After he left and I looked in the trash I saw all that bloody trash... helped make sense of how much pain I dealt with. I preceded to be unable to stand upright for the rest of the day and cramped miserably for the next few. A week or two later I was called at home by a female doctor from the same practice of the second doctor. She precedes to tell me she is going over my results and that I have herpes. Imagine my shock and confusion as I try and explain to her that she never saw me, I was not her patient. She insisted that I was her patient and that I just had to face the fact that I had herpes. Since I could not actually confirm that I did or didn't have herpes, if you aren't having an outbreak its difficult to diagnose, I spent the next year getting blood tests and multiple OB/GYN exams in an attempt to discover if I actually had it. Ends up I didn't but it cost me a year and a relationship since I had to tell the man I was involved with what was going on - it was understandable that he didn't want to risk his health on an unknown that did not seem to have a resolution in sight. I still hate her for being so arrogant that she would not confirm her patient information and that she would dare call a patient and deliver devastating news like that over the phone, following it with an attitude of suck it up you know you have it and quite arguing with me.

    Sad that seems so common... I have doctors and nurses in my family and even they are not immune to horrific experiences.

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  16. I followed the link and cried when I read Saudade's story. Then I read all the love flooding her comments from Epbot readers and cried again. What a wonderful group of people you've collected and inspired here.

    Thanks for sharing.

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  17. So imagine that, every day of your life, you have to get every decision perfectly right. You often have to make your choices based on limited information, in the middle of the night, after working 12 hours straight with about a 5 minute break.

    Even if your personal life is falling down around your ears, you have to keep calling every shot 100% correctly, because that's what you need not to be exceptional, but to be acceptable.

    And behind your back, you know that people are criticising you, and doubting your knowledge and ignoring your advice, and you start to doubt your own advice, and then you end up signed off sick with stress, because shooting for 100% to maintain that 'acceptable' grade is really a little bit too much when you're 28 and trying to have a life too.

    And yes, from time to time, you get grumpy and tired, and you forget the odd platitude. And you have to stick needles in people who don't want needles, and other things in other horrible places that we don't talk about, ever.

    Occasionally, you tell someone that their loved one is, despite your best efforts, going to die. I did that today. They cried. I nearly cried. I'll probably have to do it again tomorrow.

    Welcome to being a junior doctor. Please be kind to us. We're people too. Most of us are competent, thoughtful, empathetic and oh so tired...

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  18. Wow. That is amazingly horrifying. I am so glad that she made it through, so horrified she was put through that. I am fortunate to have only had good docs and nurses thus far in my life, I wish it could be the same for you and Saudade and everyone who has related their bad experiences. Hopefully you will all be blessed with the good ones and only the good ones from now!

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  19. I am in shock. I read the whole story and I am livid. So much for being in a 1st world country, when we're dismissed by people in 'educated' positions.

    To quote Regent Valda from Warehouse 13:

    "John Adams was a farmer. Abraham Lincoln was a small-town lawyer. Plato, Socrates were teachers. Jesus was a carpenter. To equate wisdom and judgement with profession is, at best, insulting."

    There is a reason people often talk to janitors, bus drivers and housewives! And a frightened young woman does know her own body best.

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  20. Thanks for sharing Jen. I spent my entire lunch break reading and crying. What an amazing story and such strength!

    I will follow her year of doodles now!

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  21. It is imperative that EVERYONE have access to GOOD, competent healthcare. And CARE is the operative word.

    I worked in healthcare for over 13 years. I've been around healthcare professionals for my entire life, as my mom is an RN and my dad, an MD. Sadly, unfortunate things do happen.

    EVERYONE NEEDS TO GET INVOLVED IN HEALTHCARE REFORM!!!! I don't mean "Obama-care" or any other specific political program, but really, truly CHANGING how things are done!!! It MUST start with the insurance industry!!!

    If you are a believer in government running our healthcare system, start reading some of the horror stories that come from patients of the Veteran's Administration (VA) Hospitals. I've had 2 different cousins that nearly died from negligent care in the VA system in the past couple years. Not negligence due to anyone "not caring" about them, but just over-worked, understaffed, and too busy to double check the details.

    We ALL need to be proactive about our own health, and stand up for our loved ones who can't stand up for themselves.

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  22. Thank you... the last couple of weeks I've been experiencing some crazy pains in my chest and stomach, and haven't been taken completely seriously... Sometimes I've been wondering if I'm making it seem worse than it really is, or maybe I should just ignore it, because how foolish would I feel if it ended up being nothing?
    I really needed to read this. You're right, we do know our body best, we know when there is something wrong.. I know I don't feel normal right now, and I know I need to push until I get the help I need.

    Prayers going out to everyone who's lives have been affected in a negative way by the health care system... and prayers for an improved system and more doctors and nurses that take us seriously!

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  23. I wish I could shout from the rooftops that your doctor is not the boss of you, you should not be meek and compliant to your doctor.

    You should be partners, working together to insure your health. If your concerns are dismissed, if you don't feel comfortable and happy talking to your doctor, get a new doctor.

    Pregnancy and childbirth is a traumatic experience when it goes right; your OB should NEVER dismiss concerns out of hand or play comparison games with other 'worse off' patients.

    You are not being difficult if you don't want to work with someone. You are being a good patient.

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  24. As I sat in the Gyno department of the county hospital, i found the courage to tell the doctor, the one thing we MUST all remind them of, or find a doc who believes it too...
    They may have thousands of me (crying, hysterical patients whose bodies are failing them or killing them), we only have one them (doctor who may have the key to stop the pain, stop the illness & literally save us). And they need to realize how much power they hold over us. They are all wr have at that moment.
    I have fought Lyme Disease for 18yrs. Endometriosis & Fibroids for 14 years, thru private & public health care. & this is what I've learned the most. You are worth fighting for!! Repeat after me ~ I am worth fighting for.
    Jen, you. & this amazing lady are beautiful, brave & so worth fighting for.

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  25. @Anonymous Jr. Doctor:

    I know you are only a human attempting to perform with super-human abilities for hours on end. I do understand that you work with people ALL THE TIME and rarely get a moment to rest or collect yourself, much less hide in a cubicle if you are having a bad day. Doctors, nurses, residents and those on fellowships work too many hours at a time and often stay past a shift simply because they are needed. I do appreciate all of that. I guess I just wanted to say I think we all, medical staff and patients alike, want to feel appreciated and not marginalized. We want to be heard and taken seriously, with respect.

    Andrea

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  26. I've been on all sides of this.

    My brother is an RN, currently ER, formerly pediatric ICU/cancer ward.

    I watched my mother in law die a horrible, painful death due to medical incompetence.

    I've fought many battles over my own health issues - winning some, losing others.

    All of the sides come down to just one thing: educate yourself and become your own (and your family's) best advocate, just as you would for anything else. Look for the best health care provider you can find.

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  27. Thanks for this-there are oversights in every branch of medicine, but the "hysterical pregnant girl" attitude is so prevelant, especially in certain parts of the country, that it is beyond important that we call attention to it. So so so many pregnant woman and babies are harmed through being ignored-even with things so simple as, "It's your first baby, you can't possibly be ready to deliver, you've only been in labor two hours" and mom has a baby in the waiting area, or "if you didn't have cramps, you didn't miscarry" (that was me, and caused me to carry part of a pregnancy for 6 more weeks, thinking there was still a baby living inside me). Nurses and OBs deal with lots of nervous and possibly hysterical pregnant women, most of whom are experiencing something normal-- but they can't forget for one second that some of those women are going to have real problems, and ALL OF THEM-without exception-deserve respect and compassion.

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  28. I agree with so many others that we need to become educated, we need to educate our children and our friends. I, as with many others, have suffered from not advocating for myself enough, not trusting myself to speak up.
    Even now, I should probably get into the doctor because I am having periods on the depo shot, which isn't supposed to happen. Especially not twice in one month.

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  29. You have no idea how many people sent this to me with in the last hour or so!

    I went through about a decade of severe depression because I blamed myself for a very similar experience. I'm still climbing out of that rather dark scary hole.

    Thank you for sharing your and also Saudade's experiences as well as expressing the need for proactiveness with your health. It literally could mean your life!

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  30. Please take away one other thought from this story, and all stories like it: when you know a friend or neighbor who is alone, make sure they understand that you will drop EVERYTHING to be with them in a medical emergency. If someone needs a friend to go to the emergency room, or take notes when they are too groggy after surgery, BE THAT FRIEND. We can advocate for each other, when weakness is interpreted as a lack of immediate need. I wish someone had been there for Saudade to make sure the staff listened.

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  31. I am so sorry Saudade had to go through this horror, not once, but twice! I am so glad she finally found her voice and was able to speak of it. Now Saudade is no longer just another sad victim of medical incompetence, but a survivor who has chosen to THRIVE. What an inspiration!

    Kudos to you, Jen, and Saudade and all the women whom have survived and have found the courage to share their stories.

    Blessings! :)

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  32. Saudade's story is so very moving. I definitely let out some tears. It was hard to read since I just went through something similar with my dad. Unfortunately, he didn't get to walk away from it. He had been dismissed by his doctor for back pain. He was simply given aspirin. Had his doctor taken him seriously & run a blood test, they would have seen the multiple myeloma (blood cancer) that was attacking my dad. We were only able to find out because my mom knew deep down he should go to the E.R.
    It turned out his lower back pain was actually his kidneys failing. The wonderful staff at our local ER and the oncology dept. gave us 2 more years with him. If he hadn't gone to the ER when he did...well it wouldn't have even been 2 days.
    The moral? Trust your instinct. If you don't feel like your getting the right treatment/diagnosis - get another opinion. It's scary, but staying quiet can be even worse. There are good doctors out there and there are SO MANY wonderful nurses.
    -Kris

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  33. Jen - Thank you for posting this - it is an important reminder that everyone deserves appropriate medical care and that not everyone should be in the medical field. Medicine requires listening skills, empathy and caring, much of which is missing in today's health care system.

    Proud of you for sharing Saudade's story, and your own as well - you are strong and courageous!

    Allie

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  34. I'm so sorry this happened, and so sorry for the loss of the child. Heartbreaking. Thank you for sharing.
    This is why I go to every appointment with my Mom since her near-deadly brain aneurysm, and volunteer to go with every friend to every medical appointment. Funny how I am not afraid to stand up and speak out for a friend, but not myself.

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  35. A week ago this would of been just another story for me. But last weekend I opened up my home to a mother who's been fighting the healthcare system for close to two years. Her adult son suffered a major brain injury and she has put her entire life on hold to take care of him. The things I've learned about the faults in the system are shocking and heartbreaking. Moral of the story, don't have a major brain injury in Tennessee. She has to fight for every step of progress while the healthcare system does more to hinder than help. Fight for yourself and your loved ones!!!

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  36. I've been reading CW for a long time but never completely read this blog and I just spent the last two nights reading every single post from the beginning( I am aware I have no life)
    You make your fellow geeks and nerds proud!!! Also your blog helped me introduce my boyfriend to steam punk and convince him to let our geek flags fly more proudly.

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  37. I've always gone to the same doctor as my mom, never a pediatrician or anything. Recently I started having some gynecological issues as well as serious anxiety attacks. It took three years of her dismissing the fact that anxiety was causing me to not be able to breathe/to throw up on a monthly basis before I decided I didn't want to deal with it any more and was going to find someone who might actually help. I'm currently in the midst of applying to medical schools, and I hope to eventually end up a trauma surgeon. I just wanted to share that some of the future doctors at least are hearing these stories and will try and break the cycle

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  38. It's true. All doctors are not omniscient gods. And thank heaven, not all of them are incompetent fools. I've met both. In December of last year, I was having a problem with my ankles and feet swelling so badly I could hardly walk. I also noticed the right side of my abdomen had swollen, leaving finger-wide stretch marks in the skin. The skin hurt, but nothing inside did. The doc sent me to the ER, where an ultrasound found no blood clots, but a cyst in my right knee. The ER doc explained quite loftily that the cyst was leaking fluid which was pooling in my right foot and ankle. "Elevation and no salt," he ordered. When I asked about the left ankle, he shrugged. And when I showed him my abdomen, he explained again that the Baker's cyst in my knee was leaking, and the fluid was *backing up my leg into the abdominal area" (yeah, i didn't believe it then, and other medical personnel have given me that "he did NOT say that!" look) and was nothing to worry about. It took me until late July to get someone to look at me and see not an overweight woman with a big belly, but a problem. One CT scan, blood test, and ultrasound later, I have been diagnosed with multiple ovarian cysts - non-cancerous, thank the lord. Now we're waiting for the teaching hospital in Boston to decide what's next. And I've learned to be a lot more insistent! I feel so badly for Saudade, who did not deserve what happened to her, and _was not at fault_ in any way, bless her heart. Most of the folks at the ER have been wonderful to me, and I know that Dr. M. of the "leaking cyst" theory is no doubt overworked and under-rested, but really! As Bel Kauffman said in "Up the Down Staircase", "Let it be a learning experience for you" - on both sides of the equation.

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  39. I thought I would pop in and say hi... hi and a big Thank You.

    Thanks everybody for stopping by and leaving wonderful encouraging words and sharing your own stories.

    I was so surprised by this post I had to triple check when I first found it lol.

    Anyway, I have written an update encompassing a bunch of this on the original post and a follow-up (all linked to the original post).

    Words really don't manage to communicate efficiently enough how much this has meant to me. How honored I have felt when people have shared their stories and how happy I was that my ramblings have helped somebody.

    All of you, together, might have filled me up with so much courage and awesome feelings of affection that I can, for the first time, envision myself achieving the dreams I had forgotten.

    What can I say, the Epbot community is incredible.

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  40. What a horrifying ordeal! Being in pain, dying and being belittled. My heart aches for her and the loss of her child. ((((Hugs))))

    I think I may share this on my blog also. Her story needs to be told and she needs to know that she's NOT alone.

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  41. Thank you for the link to Saudade's story.

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  42. thank you, Saudade for sharing your story with us.

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