The Medical System Has Failed Me

The Medical System Has Failed Me

By Sami Jankins

Editor’s Note: This article was originally published on Chronicality.com.

Sami Jankins

Sami Jankins

My declaration is not the first time this problem has been pointed out, but regardless of that, the medical system is broken. I have spent my entire life in the ranks of doctors and nurses and wandering the hospital halls. I’m a proactive patient. I’ve learned to take care of myself. I have learned my limits. I no longer extend myself beyond my medical capabilities, even though I’d like to live the normal life of a 20-something. I realize this isn’t possible. I take all of my medications on time. I carry a list of all of my allergies and medications with me along with the precise time of when I take them. This list is always perfectly up to date. I go to all of my follow-up appointments. I’ve learned to organize my appointments for efficiency by providing my doctors a list of questions and concerns at the beginning of the appointment so they know what medical issues need to be addressed. I have done my work. I have kept up my end of the bargain. Now let me share my insight on how the medical system has failed me.

Medication errors are more common than you might think.

When I’m in pain, it is pretty much without fail that once per year, morphine or some other medication I’m allergic to will make it into my hospital or ER room, despite the fact that it is on my allergy list. Almost every visit someone tries to give me ibuprofen or another NSAID. I’m on massive amounts of blood thinners, so this is highly contraindicated for me. It’s not uncommon that someone would be on blood thinners, and there’s no excuse for physicians to even bring these medications up as possibilities for me.

I wish health systems would learn to communicate with one another.

Most of my doctors cannot directly admit me to the hospital, so I’m often forced to go through the ER. This past year I made it all the way to being admitted without anyone having a clue of why I was admitted in the first place. My primary care doctor had noticed my blood work showed signs of sepsis. I had to explain this to the white coat posse five times before they finally pulled up the note attached to my file.

The ER is always treacherous and I try to avoid it at all costs. Luckily, there is an urgent care center nearby. Once, I contacted them in advance, just in case, to inquire if they could handle intractable migraines — those that have gone on for days unresponsive to medication. I was told the facility could handle it, but that it would be helpful if my neurologist created a protocol. My neurologist put together a treatment plan and attached it to my online chart. But when I finally presented with an intractable migraine at the urgent care center a few months later, I was informed that patients with protocol seem “suspicious.” I was following orders that their center had requested and was attempting to help in sorting through my complex medical history, but their inclination was to immediately go for the medications not on the established protocol. There’s a reason they aren’t on the protocol. Sometimes my medication list isn’t even read.

I’m not a junkie, I’ve just been a professional patient for a long, long time.

When I ask for the medication listed in my protocol, that is not me being a “junkie.” When I say what veins are better and that I need a small gauge IV, it’s because I’ve spent years in the hospital needing 15-plus sticks and anesthesiologists coming to my room to start IVs because my veins are that bad. Unfortunately, patients advocating for themselves is not always welcomed.

When I have an infection and plead that I need IV steroids due to my body’s inability to make its own due to adrenal insufficiency, which is also documented, this is not an attempt for me to get high. No one gets high off of prednisone. I had an asthma flare last summer and my insurance refused to cover any asthma medication whatsoever. I had to go on two and a half weeks of otherwise unnecessary oral prednisone following an ER, urgent care and primary care visit because my lungs kept getting worse. I’m not sure they understand what cost efficacy truly means. At the beginning of this year my insurance refused to keep me inpatient for my asthma, yet also wouldn’t cover my outpatient asthma medications. What am I supposed to do then?

Unfortunately, patients advocating for themselves is not always welcomed.

I had two severe allergic reactions to blood. The blood bank told my doctor that I would have to have another severe allergic reaction while inpatient to prove that I needed the same one unit of blood, but divided into three smaller plastic pediatric bags so I can get one unit over a longer length of time. I had that reaction and it was scary. Access to the smaller bags is still in question even though they aren’t more expensive. I will need blood again. Will I be forced to have a reaction over a battle of plastic bag size?

It can always be worse, I know.

A year and a half ago I was hospitalized in a city I had never been hospitalized in before. My family was thousands of miles away, but I was fortunate to have friends with me to advocate on my behalf. Numerous times they stopped healthcare professionals from administering incorrect medication, or tracked them from room to room when nurse call light was left unanswered for an hour while I was in the midst of having an acute allergic reaction to medication. My friend pulled a medical student out of another room because no one was attending to the anaphylaxis.

I was told my potassium levels were severely depleted. I needed an infusion urgently. The “urgent” infusion arrived five hours later. It took me three hours just to get a little water. Had my friends not been there with me, staying on top of things every moment, I can’t say I would have made it out of the hospital as intact.

All I ask is for respect from the medical community.

I don’t deserve this. No one deserves this. I understand my symptoms are frustrating and confusing. I understand that I’m an almost unsolvable puzzle so all I seem like is a liability. However, I am a person trying to function and lead as much of a salvageable life as possible. I do not need to be treated as if I’m sub-human or be expected to discuss aspects of my medical health, that in no way pertain to my current health state, with some random doctor or pack of medical students because they are curious and find me fascinating. I am not a circus freak! To the people working in the medical system: I could be your cousin, your niece or your spouse’s best friend. I am a person with real emotions that I often have to keep contained to get by in your system.

My own specialists are wonderful people struggling within a system that does not allow them to treat their patients with the time and care they know they deserve. Insurance dictates what they can prescribe as if they haven’t spent years receiving an education or have the debt to prove it. They have to put up with a loss of control over their own patient when I end up at the ER or inpatient to doctors who don’t know my case nor care to. They have to wait out other physicians unraveling years of hard work they put into getting my health stable. My own specialists are often left without a say, and no, 15 minutes isn’t enough for any physician to really provide a thorough appointment. Insurance companies need to stop holding them to ridiculous standards.

I’m not alone.

Please respect me. I know I can’t be fixed, but the medical system can be.

This is not just happening to me, it’s an epidemic in the chronic health treatment world. I know I am not the patient the medical world wants. I am not the healthy person I want to be, but I don’t get that choice. I respect the time of those within the medical field. Please respect me. I know I can’t be fixed, but the medical system can be.

Sami Jankins lives in Wisconsin and writes for several publications around the country. She holds an MFA in Screenwriting from UC-Riverside at Palm Desert and is a dating advice columnist for The Good Men Project’s column — Dating in the Digital Age with Sami Jankins. She is the current press and social media editor for The Coachella Review. She has an ongoing blog called Chronicles of a Cheerful Clotter for HemAware Magazine, where she details her life with chronic health conditions. Sami is also a co-producer for the documentary Invisible: The Film, that focuses on individuals living with chronic pain and invisible illness. She has served on the Board of Directors for the National Hemophilia Foundation, spent time as a senatorial intern, and was Miss Wisconsin for the ANTSO program. In addition, she has had articles published in Chronicality, Elephant Journal, The Glow (Australia), I.G. Living Magazine, The Manifest-Station, The Mighty, Ravishly, and YourTango. Her interests include ukuleles and sloths. Find her @SamiDan19.

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Authored by: Sami Jankins

There are 16 comments for this article
  1. Krissy at 4:47 pm

    Sami, thanks for writing about your personal experiences. So many of us have gone through so many of these things, or nearly like them. I feel bad that you have had so much more than your share, and hope things get better for you.

    I can always tell if a doctor comes into the exam room, whether s/he has read my chart and notes. If the doc doesn’t have a clue about me, especially if it’s not the first appointment, I will not go back. We shouldn’t even have to pay for visits like that.

    I recently broke my wrist and went to the urgent care down the street, then made an appointment with an ortho. After three visits, I found I had been in the wrong brace and my wrist wasn’t healing right. The X-Ray machine they had was sort of like a Polaroid, where an image spits out of a printer. The NP kept looking at my films and pointing to a specific area in my wrist and saying, there’s something going on right there, but we don’t know what it is. You may have broken it in two places. At the next appointment she said to me, “I have something to offer you. We could do surgery and then you won’t be DEFORMED for the rest of your life!” She was offering me surgery that I didn’t need. Wow.

    I finally went to another doc and they had a real X-Ray machine which showed a bunch of RA in that spot the PA was pointing to. I knew I would have added pain and swelling because I have RA, but the film at that other doctor was so bad even a pro couldn’t see what was going on. I was livid. I now have a crooked wrist with bumps and swelling that will go on and on. I don’t care about the looks of it at my age, but I am sure angry with that doc and his PA. I later recalled he had a newspaper clipping on the wall of the waiting room that was a story about the number of surgeries he had done and how amazing it was because the number was huge! Well…he sold a lot of those, I’m sure.

    I am going to notify Medicare and will not pay my bill. I will also write a letter addressed to Medicare with a copy sent to the doctor in question.

    If you buy a shirt from a store and when you get home you find it is dirty and torn, you bring back for a refund. But if a problem has to do with delicate medical issues, there is no chance to “return” what you bought.

  2. Denise Thetford at 11:59 am

    Sami, I also have adrenal insufficiency (SWCAH) & intractable migraine. I’d love to talk with you.

  3. Tracy at 11:49 am

    I understand, when my pain first started, I went to the ER, they did lab, which was normal, nothing for pain. Waited 4 hours to see a doctor who never came so we walked out. Two nights later the pain was unbearable so we went back to the ER, I asked to have an MRI, but the doctor refused, MRIs were only done on trauma patients. Still no pain medication. The next day was a Monday. Saw my pcp associate, ordered the MRI, but no pain medication. The results returned with AVN. A vascular necrosis, dead bone from a fall off a bike, needed a hip replacement. The associate charged the insurance company. $500.00 for an emergency visit. The idea was, everyone thought I was drug seeking. This was 4 years ago and 6 surgeries.

  4. Mark Ibsen MD at 9:14 am

    My beloved profession
    Is
    Unrecognizable.

  5. Chronic Pain Sufferer at 7:23 pm

    Thank you for your article Sami.

    Many of us relate through our similar experiences. The American Medical and Healthcare Systems needs serious improvement. I believe proper healthcare should be a right for every American citizen. I think we should feel safe to trust our healthcare providers. Sadly this isn’t so, in our great country, that’s not so great in the area of healthcare.

    In general, Healthcare professionals outside of PM have NOT been EDUCATED efficiently with regard to chronic pain patients and have NOT been TRAINED to treat chronic pain patients effectively or humanely.

    Provider EDUCATION is crucial for chronic pain sufferers, as is patient education.

    I also avoid the ER after lousy experiences. The judgement, lack of respect and common courtesy saddens me.

    I have gone to the ER with chest pains from Fibromyalgia (with nausea, sweating, pain in both arms, lightheadedness). The first time, I was admitted and many tests were done. They finally discovered that I had Pericarditis which I think was the result of untreated Fibro flare up, and possible reaction to Cymbalta which I discontinued. I’ve had to discontinue Lyrica, Gabapentin and others due to the dangerous side effects experienced. In my experience, the ER staffs don’t know the truth about Fibromyalgia and think it was in my head. I had to adamantly push to be admitted for diagnostic tests.
    You can probably relate to the terrible experiences in the ER, so I don’t need to share all the stories..

    Prior to my first ER visit for undiagnosed Fibro flare up, my primary sent me to a psychiatrist.

    Later, I was referred to a Rheumatologist for knee injections by my Ortho (prior to bi-lateral knee surgeries) and she’s the doctor who FINALLY diagnosed the Fibromyalgia (it was accidentally discovered during a visit for knee injections when she noticed I was in terrible pain, other than just my knees. She asked me about it, examined me, asked if I’d heard of Fibromyalgia, and said I have severe/advanced Fibromyalgia).

    After ER with Pericarditis, I was referred to Pain Management by my Primary and ultimately received Opiates to take the edge off my pain (this was after trying all the other meds for Fibro). I am fortunate to have great Rheumatologist and Pain Management doctors. I’m finally understood and validated. NOW, my fear is that the CDC and others will get in the way of my care. It took so long to find relief and I don’t want it taken away. Living in chronic pain is HELL (depressing, isolating, tormenting). Having Pain Management to take the edge off with Opiates, makes life bearable.
    I use ice instead of anti-inflammatories after many years of use leading to problems including colitis.
    If the CDC wants to take Opiates away from Chronic Pain Patients, they must provide alternative that works, otherwise the CDC puts patients at serious risk for disastrous if not fatal results.

    Advocating for ourselves is truly challenging. I’m grateful for the National Pain Report forum.

  6. Cathy M at 6:31 pm

    Well written – and you are definitely not alone in being mistreated by a broken system! I was just in the hospital this Monday, helping a friend who had her knee replaced. As I hung out in the hall outside her room (so she could have a procedure), I saw a bunch of staff huddling, then “hanging around” – I overheard the muttered, “call the Rapid Response team…” and I waited, as they did, while that team took over 20 minutes to arrive! I don’t know what the emergency was, but that doesn’t sound rapid to me!! And when my botched right hip was re-operated on, they left me dislocated for 8 hours while they tried to reserve an operating room! I have very few experiences with hospitals, but they are scary. The staff are usually quite nice and professional – and helpless. It’s obvious the bizarre rules come from up the hierarchy and tho they roll their eyes, they have to obey. No way do I want a “time and motion study” expert telling medical professionals how much time they need! We have to take the profit out of the system; cap the salaries and bonuses of the bigwig business bully boys and return the medical system to the medical staff.

  7. Dave at 3:19 pm

    Sami- I am sorry for the difficulties and struggles you are encountering and will pray that your situation will get better soon.

  8. Jeff at 3:01 pm

    Basically, our job as patients according to doctors is just to shut up and let them do whatever they want, regardless if we have treatment protocol from a better trained doctor or specialist. ERs are notorious for treating migraine patients like they are heroin addicts, and the amount of disdain and contempt they treat migraine patients with should be criminal.

    Why even ask what my pain level is if you are not going to believe me? Why treat me like a drug addict when you can look in your little computer and see that I might go to the ER maybe 3 times a year with an intractable migraine? They act like I am there 3 times a week asking for pain medication. I have records of migraine diagnosis going back to when I was 7 years old. Do they think I was trying to get high of pain medicine or scam the system at 7? They can see all of my prescriptions and when I got them filled. They can see every single test and pill I have ever been given, but they already have their minds made up that I am a drug addict and faking pain, and I guess vomiting as well, in order to get one measly shot of pain medicine so I don’t want to jump in front of a semi-truck. They are heartless, indifferent, and have a confirmation bias that would cause any sane person to pull their hair out in frustration as to why they entered the medical profession to begin with.

    I have had doctors say things like: “I give Motrin to migraine patients. The only people who really hurt from a migraine are the idiots that go home and kill themselves.” I’m like WTF is wrong with you? Those “idiots” are called patients, and the reason they go home and kill themselves is because of horrible doctors like you who are indifferent to their suffering. I wish I could give every doctor on the planet a migraine for 48 hours, just so they could experience the agony we go through. It is the only thing that I can think of which would stop the stereotypes and frankly malpractice that chronic pain patients face. I doubt most of them would last 48 hours. I have lived through pain that would kill most people, and the doctors are blissfully unaware of the damage they cause, how indifferent and cold they seem, and how hopeless they can make us feel.

  9. Sandra at 2:36 pm

    Yes I hear you. I agree.
    I have had so many of my friends move to South America. The have reported to me they wish they would have did that ten years ago. The big reason they moved was medical , medications , cost insurance to high. They say they are very happy about the excellent care they receive. They said they save so much money.
    So is this the future for us. We have talked about this. More of my friends are leaving. Word to mouth is causing many to leave this country.
    Other country’s have a lot to say about pain medication being taken away from people in pain. I will not repeat the comments. So I guess we have some choices.
    pain medication

  10. G at 12:31 pm

    If you don’t fit into the sex+weight+ height= dosage chart you’re screwed. Several times I’ve nearly drowned in my own fluids because they insist on a saline iv automatically, and don’t listen when I tell them, it must be set at a lower rate, i have documentation. Now I don’t let start one “just in case” and I’m being “difficult”.

  11. MichaelL at 11:00 am

    God forbid, that you question what is going on? It is not your body, don’t you know?! The medical hierarchy is helping destroy the pain control of 98% of the people with chronic pain, BECAUSE THEY DON’T KNOW HOW TO PROPERLY DO IT. Or, they refuse to take he amount of time that it takes to properly do it. Or the biggest reason, they are afraid of the regulatory agencies, full of non-pain specialists, who decide how the pain patients should be treated! That is akin to asking a brain surgeon to do a coronary bypass!

  12. Jan Kane at 10:46 am

    I’m a retired RN…worked mostly in the operating room. It’s been a few decades since I’ve worked due to chronic pain of thirty years. It saddens me immensely concerning today’s medical system. There were frustrating issues years ago and it was one reason I chose to work where I did. Staffing was more adequate and I saw myself as my patient’s “protector” while they were under anesthesia.
    I really think there is some inadequate training in many areas today…then, you will come upon some gifted genius who has compassion as well. I then say, “Thank you Lord”.

  13. Matt at 9:25 am

    Ms. Jankins,

    First let me say that you have detailed with precision the plight we find ourselves in with regard to our broken (as we see it) and reckless negligence of our current healthcare system. For the government who usurped 1/6th of the country’s economy, it’s working as planned. The plan is simple and it’s profit trumps patient care. But our current President promised that nothing would change as he barn stormed the country, force feeding us the lie.

    Hospital administrators are under the gun by their board of directors to stay in the black while the government under Medicaid and Medicare reimbursements are staggering and ridiculously low. A hospital who accepts Medicaid patients can expect cost + 2%, which makes it almost impossible to break even.

    Hospitals look at production, how many patients they can churn out in a day. 15 minutes is acceptable, but 45 minutes to an hour will have a hospital director having a discussion with you about efficiency. Doctor’s work by a government “play book” or check list. If your A1C test comes back higher than government standards, they are required to prescribe you a Statin drug. Statin drugs have a host of dangerous side effects that include liver damage and an increase of type 2 diabetes. Regular blood tests for elevated liver enzymes are no longer paid for, and if you should happen to develope type 2 diabetes, well big Pharma is ready to deliver their newest medication that will also harm your liver.
    They talk out of both sides of there mouths, but the bottom line is that all parties concerned are beginning to look at patients in terms of profit or loss. The complicated to case, the more loss can incurr.

    Both hospitals and doctors have become inundated with mountains of paperwork, any procedure that doesn’t follow government guidelines will not be reimbursed.
    This is true for both government insurance and so called private insurance.
    The one payer system is right around the corner, or at the very least, a select few who will monopolize the market, i.e., Blue Cross. (IMHO)

    For the patient such as yourself Sami, it becomes a nightmare direct from Hell. And Ms. Jenkins, no one can presume to know what it’s like to walk in your shoes.
    Because of your condition and your intimate relationship with your own body, you certainly know more than any physician you encounter. If you have a great relationship with your specialists, that is your only salvation because the number of doctors throwing in the towel is growing.

    Ms. Jenkins, I must agree with you absolutely. The Medical System Truly Has Failed You. It has failed many of us.

    FDA double speak on Statin drugs – http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm293330.htm

  14. Carla Cheshire at 7:04 am

    Sami, Thanks for writing. I too have experienced much the same treatment in dealing with the medical community. I’m a chronic pain patient and I’ve also had breast cancer. I’ve had several surgeries in the past few years: 5 back surgeries, a mastectomy, carpal tunnel, 2 meniscus and a neuroma on my foot. I know my veins are very hard to get an IV into. The right side is out because of the mastectomy. Every time I’m being prepped for surgery I explain the IV situation, “Do not try to put it in my hand, please!” They never listen, they always insist on doing what they want, because it’s procedure. They’ll try to stick me 3 x’s before they’ll give up and do what I’ve asked. It’s agony. Unnecessary. Why won’t these people listen to the patient?

  15. Martha Arntson at 6:47 am

    Sami, I was very disturbed by what you wrote as far as being a “proactive patient”. Only in the sense you explained it perfectly! I am also a very pro-active patient, I do my research before taking anything that is prescribed by any doctor for anything. I keep records, I keep my medications up to date on a card I carry with me. I wear a bracelet of the medications I am severely allergic to (penicillin being the most important). I wonder if you might expound a bit on what your medical issues are at such a young age? I can see why some doctors who wouldn’t know your history might be suspicious of someone so young presenting with such severe complications from medications. And, I do agree, that most doctors DO NOT want to be told what you can and can’t take. If you do that they will continue to press for extensive information regarding why you experienced such reactions and when, etc. It’s almost like too grueling of a thing to even consider going to the E.R. for anything. I’d really like to hear some other comments from others regarding your post. I hope you have a great day!

  16. Jo at 4:57 am

    (((((((((Gentle Hugs))))))))

    And I’m so sorry for how you’ve been treated. It seems like the more we point out a broken system, the more we are accused of being addicts. It is frustrating for me, and my heart breaks for others who don’t have a solid, close support system.
    Thank you for putting such a vounerable side of yourself out there by writing this.
    Thank you for helping make us all heard.