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The Challenge of Being a Patient with a Rare Disease – #PatientStories

Posted on June 2, 2017 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

The following is a guest blog post by Chelsea Freund who blogs at The Sick and the Dating. This post is part of our series of Patient Story blog posts where we ask patients to share their first-hand experiences with healthcare.

Do you believe in coincidences? Back in 2007, I decided to go back to school to become an R.N. I had been volunteering at Phoenix Children’s Hospital as a “bedside hugger” – which is exactly what it sounds like – and decided that I wanted to be a pediatric nurse, so I was studying away. The subject was advanced medical terminology, and specifically I was on the GI tract. I had been feeling terrible all day. I hadn’t been able to eat, hadn’t had any appetite. There was a nagging pain on my right side that wouldn’t go away. Finally I forced myself to eat something but it really didn’t sit well and the pain became increasingly worse.

I continued studying. I came across a paragraph or two that outlined the symptoms of appendicitis. I stopped. I thought to myself, “No way.” But by that time I couldn’t completely straighten up, and I re-read the paragraphs again. I probed my lower right quadrant. Yes, pain, there was definitely pain. I was sweating. I was also by myself and feeling a little silly; my roommate was off somewhere with her boyfriend, so it was up to me to make something happen. I had two thoughts: 1) I’ll go to the hospital that’s a mile away, and at worst, I’ll feel like an idiot, and 2) I’m going to check ahead in my book to see what else the universe has in store for me. The next chapter was on the eyes. (This is significant.) I drove myself to the hospital, hobbled up to the front desk doubled over, and it turned out my appendix was close to bursting.

I didn’t get to finish my nursing degree. The school system that I had chosen cut out evening classes for nurses and I needed my day job in the tech field in order to survive. But what I learned in school proved invaluable.

I have three-ring binders full of my medical records that I carry with me to new doctors. In the past almost seven years, I have tallied up all of the new doctors I have seen – including those in the ER – and the count is now at 59. This is where my nursing school comes in handy. I can easily communicate using the correct terminology, plus I understand what they are referring to 98% of the time – rarely do I have to ask for an explanation. Friends tell me either that it was a waste that I went to school and that I didn’t get my degree, or that I can finish it out later, and I tell them that I’m pretty sure that I went for this purpose alone: to be a patient, and specifically to be a rare disease patient.

I have been a patient all of my life. Some people are lucky in that they rarely get sick. I was that kid who always sat out from gym class because my asthma was strangling me, or I was allergic to the chlorine in the pool so I emerged from the water with great, big hives. I was always in the middle of or recovering from some upper respiratory or lung infection.

As a young adult in my 20s, I lost all of my hair over my entire body. It’s okay, I had been losing it in increments when I was much younger; it just decided to take a hike permanently when I hit 28. At age 31, I was diagnosed with Hashimoto’s. It’s also not a show stopper – I just have a really tough time losing weight and controlling my body temperature. Going through nursing school actually gave me an advantage over other students because I already understood these processes, and in turn I had a much easier time communicating with my doctors.

I was 36 when I came down with my mystery disease in July of 2010. I have never cursed my student loans – not once. I didn’t have a lot of catching up to do in the medical field to be my own advocate, because this road has been very lonely. I have to advocate a lot while also being very sick. Not once have I ever had someone come with me to appointments or the hospital.

The very first encounter I had with a neurologist was a disaster, but I knew enough not to take his answer as the final word. He performed an EMG on my limbs, checking me for myasthenia gravis, because my face was paralyzed on one side when I was upright and I would get ptosis in both of my eyelids (but they would go back to normal immediately when I tilted my head parallel to the floor), and I had a lot of trouble walking. We agreed I likely didn’t have MS or even Hashimoto’s encephalopathy according to the MRIs I had done. The EMG came out with normal results. He wrote in my chart that what I had must be psychosomatic and sent me on my way.

I started to do a lot of research at that point. After going through 14 doctors in various disciplines, I ended up being helped by a neurosurgeon through Barrow Neurological Associates in Phoenix, simply because I demanded a lumbar puncture since that was the only test I hadn’t had done in the past year. My symptoms resolved for 12 hours, so we repeated the test 4 days later, and the exact same thing happened. We decided to insert a shunt.

However, we didn’t know I would be allergic to the shunts. I had 10 surgeries in less than 4 years. My body clogs and strangles and breaks the shunts in rebellion, now only days after surgery. My neurosurgeon gave up on trying to keep a working shunt in me. But I feel like we found something out in the process that we wouldn’t have found out if the failures wouldn’t have kept happening only because we moved the location of the shunts, and that is that the membranes in my brain are extra thick. My neurosurgeon has only seen that in one other patient in his lifetime.

After my neurosurgeon stopped operating on me, I moved back to Minnesota so my family could help to care for me – I can’t be upright for any length of time before my face becomes paralyzed and my eyelids are 80% closed, and the pressure in my cranium builds to an intolerable level. After I moved, a former acquaintance happened to find my dormant account on Twitter. He had actually been looking for a former client with the same first name, but was happy to reconnect. When he read my blog, he encouraged me to actively use Twitter to make connections and join chats. It’s because of his tutelage that I’ve been a guest on podcasts, became a product blogger, and have been in contact with various researchers, so I’m forever grateful.

One of the researchers I connected with has discovered the lymph node system in the cranium, which was previously thought not to be present. We traded a few emails, but the biggest barrier is that I’m a human, and he works mainly with rats. It’s a big leap to go from rodent to human in his world, even if we can both see the possibilities. So though there may be some sort of connection between my thick membranes and his newly-discovered brain lymph node drainage system, he’s probably not going to look at me until my brain is ready for slides.

Since I’ve moved to Minnesota, it’s been very difficult to convince doctors to see me, much less keep me as a patient. In fact, after five unsuccessful tries to get in, I now have an official letter from the Mayo Clinic telling me they will not see me because I’m too rare to diagnose or treat. I had one neurologist tell me she was “just a neighborhood neurologist,” so there wasn’t anything she could do for me. I had a rheumatologist tell me to do Thai Chi, and then write in my records that I was being non-compliant for not doing it, even though my severe vertigo doesn’t even allow me to stand in a shower. I’ve had endless doctors pat me on the knee and tell me that they couldn’t help me but they were sure “someone” could.

I finally settled on a neurologist – I think she was the 58th doctor to see me – because she ordered the tests I asked for, and even one I didn’t: I wanted an upright MRI because everything happens with my symptoms when I’m upright, and I got a cognitive function test to boot. When the upright MRI showed that all of my ventricles collapsed and I have a tumor, she attempted to refer me to a neurosurgeon. The neurosurgeon sent a letter back saying that “nothing looked out of the ordinary.” I’m no expert, but then again, I’m no slouch – and I just happen to know that looking at my corpus callosum on the MRI, it should not look like Charlie Brown’s crumpled up hair swoop. The search continues for any neurosurgeon in the state of Minnesota who can handle my case. The neurologist has agreed to keep me as a patient, but her nurse often calls and starts with, “The doctor doesn’t think she needs to see you, but if you feel like you want to see her, you can.” That’s not exactly the welcoming committee.

I do have a few excellent doctors. I wish I could clone my GI doctor and carry him around in my pocket and take him out when I need a pep talk. He has the best bedside manner and has taken the time to talk to me about what is happening with me besides my intestinal tract because he’s truly interested and he wants to help. I think my pain doctor is a standup guy too; he’s in the process of moving to another medical group and deliberately chose one that didn’t have a non-compete clause. It meant less money for him, but it also means he can keep seeing the same patients. He has learned to respect me because he recognizes that I do my research and I’m a rule follower.

I have another doctor and diagnosis simply because of coincidence, and it’s a big one. While I was trekking around and being rejected by so many doctors, a friend called me up and said, “Why don’t you make an appointment with this mast cell activation syndrome doctor? It seems like you have a lot of the symptoms.” I thought to myself, “Well, why not? I’m making all of these appointments. What’s another appointment?” It turns out that that particular doctor takes a year to get into for the initial appointment. There was a cancellation, so I got in within eight months. And I did get the diagnosis. And it’s the reason my body rejects the shunts. And this doctor moved to Minnesota a year before I did. I have been assured that he won’t send me away like all of the other doctors.

So if we are in the same city and we happen to meet, I might show you my stupid human trick, which is to tilt my head so that the fluid moves around in my cranium and my face becomes un-paralyzed and I can see again. If you have the time, I may whip out my binders of medical records. I can explain everything to you. You just need to believe what you are seeing and keep an open mind.

Thanks to Chesea for sharing her story. Be sure to read other

Christina Farr’s TEDx Talk Asks “What If the Patient Knows Best?”

Posted on June 1, 2017 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

One of my favorite healthcare IT journalists is Christina Farr. She’s skipped around a few publications over the years, but she’s currently writing for CNBC about large tech companies like (Apple, Alphabet(Google), etc) that are getting into the healthcare and biotech world. Plus, she covers a lot of healthcare IT startup companies.

Christina Farr recently gave a TEDx talk at TEDx Oslo where she shared her perspective on the move from a doctor-dominated healthcare model to an empowered patient model where patient and doctor work together to find the best care solution together.

If you care about patients, take 12 minutes to listen to Christina’s TEDx talk embedded below and think about what her message means for you. It’s a good one.

A Missing and Ignored Patient Narrative

Posted on February 24, 2017 I Written By

Healthcare as a Human Right. Physician Suicide Loss Survivor.
Janae writes about Artificial Intelligence, Virtual Reality, Data Analytics, Engagement and Investing in Healthcare.
twitter: @coherencemed

Sometimes I feel like the discussion of the patient narrative and open notes make me want to scream.  Step away from the new Health trend and back to improving access for every patient. Patient Experience and specifically Patient Narrative has been a theme of the HIMSS healthcare conference this year, from patient data and records to open notes and patient advocates. I have to admit- I love watching what people have done and what companies think of.

It reminds me of my German class on the Literature of the Holocaust. Our professor stood up and introduced the Holocaust as unique because the German Jews could read and write, so they had records. Without records, the voices of countless have been lost. Their voices died with them. Patient Narrative is similar. It’s teaching us so much about better workflow and records and getting better outcomes. Max Stroud gave a great presentation about her sister’s experience with lung cancer and managing patient records. They both admitted that it was difficult for them despite being well educated and knowledgeable about healthcare.

At HIMSS everyone looks at shiny new products with novelty pens and some alternate universe where it makes sense that we all need another plug in to our electronic medical record to really “make a difference” for patient health.

Right before HIMSS some of my late husband’s medical school classmates came to visit me and go to ongoing education in Park City. I asked them what they thought about patient involvement and one of them discussed the reality of emergency room care in impoverished areas.  They discussed losing faith in patients and how to deal with trauma patients. I remember the jokes about drug seekers. I told them about being at dinner in suburban Utah when an acquaintance casually mentioned we should do Molly on our way to yoga. The doctors I told laughed it off and said Molly really wasn’t that serious. Those narratives aren’t on our health records and the healthcare system is hemorrhaging cost with its lack of ability to treat them. Patients in some rural areas have access to care issues that telehealth doesn’t always bridge the gap for.

Is patient narrative just the next buzzword so we can distract ourselves from poverty and violence and human trafficking and corporate identity theft? Are we just talking louder to drown out the patients that healthcare is failing? Not every company or hospital group can afford to go to HIMSS. Participants have relatively good access to care and a lifestyle of relative privilege. Exhibitors are selling something and it certainly isn’t about the unglamorous parts of medicine.  The undocumented patient narrative will never climb the walls of privilege in a system with an entire industry of payor complexity and government regulation.  There were so many companies and even in telemedicine in rural areas and patient narrative presentations I didn’t see the patient stories like the ones I heard from my friends.

We are distracting ourselves from the complete lack of availability of care for economically disadvantaged patients by geeking out over the shiny data with our fellow zealots.  We can learn new things and find interesting new companies and many places are getting better, but we need a new record and involvement from a group that could never come to HIMSS. A narrative for the illiterate, uninformed, impoverished forgotten stories.


Patients’ Rights Videos

Posted on June 9, 2016 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

ONC and OCR recently released a number of videos that outline patients’ rights. Here’s one called “Individual’s Rights under HIPAA to Access their Health Information”:

What do you think of these videos? Will they effectively educate patients?

Makes me wonder what ZDoggMD would do with the content.

EHR and mHealth Successes and Fails: Around Healthcare Scene

Posted on March 31, 2013 I Written By

Katie Clark is originally from Colorado and currently lives in Utah with her husband and son. She writes primarily for Smart Phone Health Care, but contributes to several Health Care Scene blogs, including EMR Thoughts, EMR and EHR, and EMR and HIPAA. She enjoys learning about Health IT and mHealth, and finding ways to improve her own health along the way.

Patients are somewhat taught to fear sharing medical data. While privacy is important, especially when it comes to health, being more willing to share medical data can yield great results. The key is knowing who to share information with, and who to avoid. 

EHR vendors can be tricky when it comes to keeping clients around. Sometimes, they don’t really have a choice because the EHR holds client information “hostage” when the client says they are switching EHRs. However, this is a sneaky tactic, and there are many other ways to keep an EHR client longer — most importantly, providing a great product.

While many aspects of HIT have come to a halt, mHealth continues to flourish. There are many things that other parts of HIT can learn from mHealth’s success. First, mHealth doesn’t focus on every patient at once. Next, it is an unregulated industry. And finally, the projects are marketed directly to consumers and paid for by them as well. 

Are you a hospital leader and curious about what technologies you should be watching out for? Well, the ECRI Institute has compiled a list of technologies they feel executives should be looking at this next year. This list includes Electronic Health Records, mHealth, imaging and surgery, and more. 

When an EHR fails to work correctly, how do physicians deal with it? Researchers have observed clinical workflows to answer just that question. The observations concluded that while there was no correct answer, many use paper to record information. Hopefully, this study will show EHRs where their gaps are, and help them to correct them.

There are so many consumer medical devices out there. What makes one stand out from the best? And which one has the best form factor? Wrist bands or chest straps…hand held or pocket stored? Chime in over at Smart Phone Healthcare.

Survey Says…Patients Like EMRs (Or Think They Do)

Posted on March 9, 2011 I Written By

Katherine Rourke is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she’s served as editor in chief of several healthcare B2B sites.

For years, public health officials and health leaders have been sounding the praises of EMRs, arguing that patients would enjoy safer, more effective care once providers went digital.

For a while, it was a tough sell, with surveys repeatedly suggesting that patients were suspicious that their data would be compromised or shared without their permission. Others seemingly just weren’t impressed with the concept.

Of late, however, it seems that the public has caught up, and may be well ahead of the provider community in its enthusiasm for digitizing medical records.  According to a new survey by GfK Roper, 78 percent of patients believe an EMR will allow doctors to give them better care whose doctors use EMRs believe that it helps the doctor provide better care.

According to Practice Fusion, an EMR vendor which backed the survey, patients are eager to get e-mailed appointment reminders, have their prescriptions sent electronically and view appointments online.

But wait a minute. Even if backing by a vendor hasn’t tilted the results, this kind of study doesn’t necessarily mean that patients really want an EMR as such.

My guess is that the folks surveyed by Roper have caught wind of a few cool things that more advanced medical practices and hospitals are doing (such as telemedicine, making test results accessible online and appointment scheduling) and they want in. Everybody likes convenience, no?

Somehow, I doubt they’re thinking about care coordination, sharing of medical records from one institution to another across an HIE, integrating data from various departments within a facility, creating data warehouses to do quality studies and so on.  They’re just starting to get a feel for the bells and whistles, some of which don’t even require an EMR to execute.

No, the truth is that it most Americans will never understand the clinical problems EMRs are designed to solve, as most will never delve into issues like risk analysis and patient safety management.  So their interest will inevitably flag.

But for now, we’ve got their attention. This is a moment — the EMR’s “15 minutes of fame” — in which the buzz is so intense that even consumers are getting excited.

Providers, now is the time:  Reach out and educate consumers on the value of your EMR investment while they’re still interested.  This moment may not come again.

UPDATE: As you’ll see above, Practice Fusion was kind enough to correct my understanding of a key part of of the study.  The idea that patients whose doctors already have EMRs in place are happy about it is different, of course, than saying that consumers generally want doctors to hurry up and adopt one. That being said, I’d still argue that even these patients are at a gee-whiz stage, and that their enthusiasm won’t last long. What do you think?