By Stacey Kumagai
If you have chronic health issues, cancer, autoimmune diseases like Lupus, MS, gout, GERD, fibromyalgia, stroke, epilepsy, diabetes, have had a heart attack (and the list goes on) amid COVID-19 – chances are you’re at a new crossroads.
If you have any pre-existing conditions like these or something from the long encyclopedia list of other conditions during this pandemic then you’re experiencing something that others who were healthy before coronavirus have not: Having to navigate healthcare treatments, recovery, telemedicine, unreturned phone calls, specialists not speaking to your primary care doctor with updates because there is literally ‘no time,’ and yes, your own emergency situation and care at a time when the entire world’s healthcare system is taxed-to-the-max and overloaded.
Your HUMAN self may sit and say “Okay, is this it? Is this my fate/hand I am dealt?”
Facing mortality as one of the ‘forgotten’ may feel debilitating getting through this overloaded system.
But may I gently and annoyingly remind you that your HIGHER-SELF SOUL knows better.
It is time for a REBIRTH of HOW you approach your own health care in a changed system and a new world that you have not had to navigate before.
With that it is here I wish to empower you with LINKING TO YOUR OWN PATIENT ADVOCACY THROUGH COMMUNICATION before it gets to the point of no return and may it be helpful as you try to live in a world adjusting to COVID-19’s vaccinated, those unable to get vaccinated due to underlying conditions/allergies like yours, and what health care may look like for you trying to get help through this changed system.
Before I get into a long-winded, unedited rambling blog as I already anticipate this will fast top 3,000 words based from my own personal experience, let me first arm you with some facts/truths and direction to help you through this time.
FIRST THING TO DO:
- 1) Create a telephone tree of all of your doctors from your primary care to every specialist with a list of every test, lab and screening you’ve had and do your best to gather every single medical record YOURSELF that you’ve ever had. This includes any blood tests, X-rays, ultrasounds, EKGs, etc. and be sure to include the dates of these tests listing all of this UNDER THE NAME of your doctor, the phone and fax numbers for each specialist who ordered them.
WHY is this important? Your Primary Care Physician may be the “hub” who has all your records, but during a pandemic – they DO NOT HAVE THE TIME to talk to all of your doctors, nor send them copies of anything so that all the doctors are on the ‘same page.’ The older you are, I know this seems daunting because your list may be longer, but if you don’t take control over your entire past history NO ONE WILL.
This could be DEADLY for you if one of your specialists does not ‘know’ what one of your other specialists has advised for treatment, test, lab or via prescription or what they’ve advised you to do as their recommended next step (if any) or lack of next step.
The truth about Western Medicine is that everyone says “You have to ask your primary care physician” – but if your specialists are not bothering to update said PCP with what they discovered, did or advised when they saw you (as they are already overwhelmed with Covid-long-haulers dealing with a myriad of SYMPTOM AFTERMATH of the virus) and you have not thoroughly and diligently kept a FULL DIARY of dates, treatments and info yourself because you assume your specialist did – you have to take matters into your own hands AND do it yourself like you’ve never DIY’d in your life before as if your life depends on it – BECAUSE IT DOES.
YES… you read that right – you have to take matters into your own hands because NO ONE ELSE WILL.
Right now during this pandemic, many E.R. facilities, hospitals and Urgent Care Centers are not allowing patients to come in person to get their records to share with their doctors because it is dangerous to have crowds of people in line to wait to get their records.
So if you do not consider yourself to be a good administrative assistant or coordinator or task-masterer – this is when you are expected to put on this hat yourself as you fight for your own health and life to call, fax (yes, you’ll have to find a public fax if you don’t still have the retro throwback, because most doctors to not do things via email), send and follow-up with phone calls for every document, CD-ROM imaging, report and lab result to coordinate with all of your other specialists.
SIGH. I know… you’re the weary limping patient running on fumes, frustration, pain and pieces of hope for help. This is especially so if you’ve had to SWITCH HEALTH INSURANCES due to layoffs, and jobs disappearing in this pandemic… health insurance companies do not have a department to pour over all your old stuff with the other said health insurance company. That is a fact. They will NOT do this legwork for you.
Now while you’re supposed to be in bed at home trying to get well and tend to keeping yourself alive, keep your livelihood and sanity, the HARD TRUTH IS – you have to now take on this ‘job’ you didn’t know you were going to have to take on in order to STAY ALIVE amid this pandemic AND ALSO avoid getting Covid and all that goes with it from here on out.
This is especially true, because MILLIONS (!) ---- YES, MILLIONS OF PEOPLE who have already had Covid and now have LIFE-LONG health issues in the aftermath are going to overload the system further.
While getting the vaccine can prevent more cases, the DAMAGE IS DONE to those who now have a buffet of health conditions that COVID ACTUALLY CAUSED. You’ve seen them in the news as the “LONG HAULERS” – who now have heart issues, brain issues, lung damage issues, and hundreds of other things depending on the “severity” of what went on when they got COVID.
What does this mean for YOU say if you have diabetes or have had a stroke or some other condition? It means you are going to have to work harder to fight for your own health survival amid your ‘other’ conditions/illnesses/diseases and ailments.
It’s a lot. Your soul may be weary and tired already, never mind if you are sick, but this is the SAD TRUTH about navigating your health at a time like this.
2) Make sure every single specialist you are seeing has a COPY of said telephone tree.
Should God provide a miracle in that there is actually a slow enough day to where medical office staff is ‘looking for something to do’ – this “LIST” in your patient file could maybe save you one phone call or one fax or one less exposure to Covid having to run around to coordinate all this all by yourself, yes – but it can also be useful if you are alone and become incapacitated at some point to remember the numerous tests, labs, specialists and who did what and when. You may think that it is already ‘in the system’ – but unless your doctors have access to all systems (Many do NOT – FYI) – they’ll be unable to retrieve all you have experienced on your journey so far, and this includes certain hospital systems that have their own portals, particularly hospitals, E.R.s and urgent care facilities. Unless you are a minor or fully incapacitated, no one (friends, family, etc.) can help you – because YOU as the patient have to authorize everything due to HIPAA Law. So get organized TODAY and get CLEAR ABOUT YOUR TOMORROW.
3) Keep an open channel with your insurance company to see what is going on behind the scenes.
Yes, you may think this is strange to say, but this is REAL. After any telemedicine visits or actual visits with any of your doctors, they may say “I’m going to order XYZ for you and we’ll talk to you next time, on this date/time.” This is where you say “Okay” and usually hang up. BUT IT IS NOT OKAY. DO NOT LEAVE IT HERE.
A standard cookie-cutter relationship looks like this between doctor and patient under normal times. Somehow humans have ‘accepted’ this as acceptable. However, during a pandemic it is worse, because chances are your appointments are SHORTER and you don’t have time to ask a list of questions.
THIS IS NOT ACCEPTABLE. You need to know WHAT is being ordered and WHY and above that, you need to know HOW RELEVANT this is to what you went in for, and if there is actual solution-oriented results coming from said ‘order’ to HELP YOU, rather than HINDER YOU or worse CONFLICT with what one of your other specialists has done.
So this is where keeping an open channel with your insurance company comes in. They can explain what your doctor won’t. They can keep you apprised of duplicate orders from your other specialists who didn’t bother to talk with one another and so forth. And yes, your insurance company can also be your friend in this light because let’s be honest – they don’t want to be milked and taken advantage of paying for unnecessary/irrelevant/duplicate things that were not fully explained TO YOU. THIS is what you can take back to your Primary Care Doctor to discuss for your bigger picture care.
But sadly – you have to do all this heavy lifting and leg work, because it WILL NOT miraculously happen for you. You have to dig deep and investigate yourself. Doing so ---- CAN SAVE TIME, ENERGY, MONEY AND YES ---- YOUR LIFE especially during a pandemic when you don’t need to be going to labs multiple times for the same thing over and over with the same result getting nowhere. PROTECT YOURSELF.4) Befriend your pharmacist READ, READ, READ all fine print AND ASK QUESTIONS. They know more about what medicine the doctors prescribed you than the doctors who prescribed them (!) in terms of severity of side-effects, precautions, interaction concerns, previous pre-existing condition concerns and conflicting health issues that could actually put you in a casket faster than the condition you have.
Sorry for the reality check – but this is especially true IF your specialists are NOT aware of what OTHER specialists or your PCP have prescribed. It’s a lethal recipe for disaster, particularly if you are seeing other specialists at the same time and things are happening rapidly before any reports can be administered (or may never be) back to your primary care doctor.
During this pandemic, each health care professional is doing their best and like a horse on a racetrack, they are not getting distracted – they are working like machines and are just doing what is in front of them, not taking hours to ponder, analyze, reflect and fully pour over your entire medical history or chart to map out your best healthy life scenario from whatever ails you. They’re trying to keep it together the best they can, nose to the grindstone in war zone.
Ouch… I know.
But if you’ve ever seen war movies where bodies are flooding in the way chocolates are rampantly falling off of the conveyor belt like in the old episode of “I Love Lucy” where Lucy and Ethel try to keep up – then you can see our NEW WORLD SITUATION through new eyes and try to formulate your communication tactics for your own life to work through your own health map.
Proof of what I just stated is when you call the office and leave messages. They all need to be reminded of WHO YOU ARE, WHAT YOU HAVE, WHAT IS GOING ON AND WHERE YOU’VE BEEN ---- they do not keep this in the memory bank of their brains remembering every detail about you –and if you DO NOT COMMUNICATE TO REMIND THEM, it could leave you open only to whatever is exchanged in that present moment. Do not assume they know you the way you hope they know you, even if they’ve been your doctor for more than a decade. And with Covid BRAIN FOG --- it is worse.
This is not criticism, nor judgment – merely reality at what everyone is calling ‘an unprecedented time’ of survival and getting to the next human who needs help. There is no more luxury time to sit for hours over your patient profile any longer and instead they may be quick to prescribe a ‘quick-fix’ band-aid pill rather than getting to your root cause.
I, for one am a Naturopath/Homeopath. I do not like chemicals and I do not like prescriptions and I take nothing. Sadly, I have seen too much go down and witnessed first-hand the deaths of many loved ones because no one bothered to read the warnings or ask questions.
In fact a few of my clients actually died because their specialists and primary care did NOT communicate and the cocktail mix of medicines killed them. I lost them at ages 36, 38 and 42. Three different stories with amazing lives gone too soon – because they were not aware they had to be their own patient advocate. THIS WAS PRE-PANDEMIC… we’re talking early 2000s. So just imagine NOW…
During a pandemic – this is worse because the system is taxed/backed up and physicians and specialists are going through patients like numbers yelled at a deli counter. However your pharmacist HAS THE TIME (if you are patient to wait on hold) and if you call WILL GIVE YOU THE TIME. Again – this can save your life.
As I had called the pharmacy to set an appointment for a Covid test, I was told by the pharmacist – “A Covid test is great, it can tell you if you have Covid today, but the truth is the tests that see if you had Covid can be much more helpful if you are experiencing anything as aftermath you’re uncertain of as we go through this – both are important as ONGOING pieces to the health picture. Even though no one knows exactly how long you can have antibodies, keeping this in mind can help as we all ride out this wave together.”
WOW… have you ever heard of a pharmacist going the extra mile to state this? Have your own doctors stated this? Has the news stated this? Have any officials shared the value of both in the breath of life as we go through this?
I welcome you to make your own assessments.5) Choose Senior Nurse Practitioners to help you.
If your doctor is so overloaded they can only give you 7.5 minutes for your appointment via telemedicine or in person taking your blood pressure or swiftly running a stethoscope over your chest like a grocery cashier scans your grocery bar codes, and you need to communicate more – ask for your next appointment to be with a Senior Nurse Practitioner. Not only will it help you navigate your journey by sharing necessary information to make sure it is actually received by human ears and the notes they take, but quite often they have a wider scope of experience talking in depth to patients with recognizable avenues to explore to do better “process of elimination” matters with tests that are not standard order.
This can also save your life from not going down a wrong avenue of assumption and prevents your specialists from prescribing medication for a condition you have yet to confirm you have, and instead lead you to more concrete answers and eliminate wasted time, money, headache, wrong-way navigation and yes, your life again from going out to yet another out-patient facility that is unnecessarily exposing you to another opportunity to get COVID.
Communication is key and these TOP 5 ways to LINK to being your own patient advocate are imperative for your future from here on out.
Don’t underestimate the power of asking as many questions as you can and continue to keep asking until you get the answers you need.
FINAL BIT OF ADVICE: Don’t give up. Be a “Nudge”…. Be persistent by calling, digging and seeking answers, because NO ONE will do this for you. Only YOU can be your very own health advocate to fight for your life AND on-going care of your health conditions instead of being a mere barcoded toe tag.
While none of us know the ‘future’ of the impact of what this pandemic will do in means of our own care for other things to maintain our health, it’s better to gear up now and prepare to stand in long lines for help in what has already been a challenging time.
My hope is that what I’ve provided can be useful to you in the interim as you continue to fight for your own health and life as the world works through what was unexpected in numbers and what wasn’t planned for in this capacity to be at said capacity, leaving the rest of those fighting for other health conditions to go it alone as warriors on their own path to figure out.
From my own first-hand grueling going-it-alone through the school of hard knocks experience and like many of you, not knowing what day will be my own last, my intention is to leave this information as part of my own legacy to help the world refine their own ways of getting the care they need through improving the communication they didn’t know they had to prepare to do in this alternate world timeline reality.
May we all emerge on the other side of this beyond mere survival, but hopefully create a way to improve upon our own health and well-being to live out the rest of our lives to the fullest in the best way we can without the bulk of it wasted trying to figure out how to get the help we need when we need it.
Sending blessings, love and light to you, Lovely Souls. Wishing you good health, safety and yes, a winning streak in your own patient advocacy communication strategies to save your own life.