TWB here! After my last post I went MIA for a bit to deal with my hemoglobin, if you did not see my last post, check it out here.
But, a few days after my last post, this happened...
I ended up in the Emergency Room. Those of us with a medical condition, or those who take care of those with medical conditions, know that this is a likely scenario we have faced or will face in the future. We know how to deal with the day to day of our conditions, but when we take a turn for the worse or have a new symptom it may mean you need to seek professional help through the ER. .
While going to the ER is the smart and safe move, it does have its worries and concerns. Depending on where you go, or when you go, in the ER you likely won't be seen by your regular physician. And if you have a specialized disease, like Pulmonary Hypertension, they may not know what to do with you due to your condition or much about the condition, no matter the reasoning for your visit.
In the past, I have gone to an ER that had no clue about Pulmonary Hypertension, my medication or my pump. I sat for 8 hours with no medical attention, waiting until a pulmonologist could be reached who was familiar PH. This then lead to a hospital stay with complications due to the lack of awareness of my condition, medication, and not up to date lab and test results. To avoid all that, I tried to prepare myself for this new ER visit to a new center.. Luckily, with the guide below, I had a much better overall experience.
So if you do have to go to an ER with Pulmonary Hypertension, or really any medical condition, here is my guide to prepare for a better visit.
Research the ER you are going to (if possible)
Call Your Normal Physician On Your Way or Upon Arrival
Bring an Overnight Bag
Bring Your Medicine Bag with Back Up Supplies and Meds
Have a Copy of Your Recent Labs and Test Results
Have a Copy of Your Living Will (or Advance Directive as its called some places) and HIPAA document.
Be Your Best Advocate
______________________
1. Research the ER you are going to (if possible)
If you are traveling by ambulance, you have little choice of where you are going. However, if you are able to choose which emergency room you are going to visit, putting in some research before showing up can help you in the long run.
The best place for you to go is the emergency room where your specialized doctor for your condition practices. That way, the hospital system has all your records, and can access your file easily. You may even be able to get your normal doctor, or part of their team, to come to the ER to see you as well.
If you are too far from your normal doctor, or they do not have an ER, at your next visit you should ask your physician what ER they recommend near you. If you are traveling, or did not ask, you can always search for a specialized center that focuses on your specific condition. For example, I always look for an ER associated with a PH center, so no matter what my underlying cause for going to the ER, the staff would likely be familiar with PH and know how to deal with PH patients.
This latest ER I went to was so up to date on what Pulmonary Hypertension is, and trained all their nursing staff to be up to date on how to care for PH patients. They knew what a Remodulin pump was, knew to run an EKG while admitting me, and knew all the right questions to ask. While not all centers are the same, and vary in degree of knowledge of specific conditions, doing the research beforehand will increase the chances that the staff are aware of that condition and know what to do.
2. Call Your Normal Physician On Your Way or Upon Arrival
No matter if you are going to your physician's ER, or somewhere different, it is best to call your physician's office either on your way to the ER or upon your arrival. This is to let your physician know a change in your health status and update them on your condition.
Also, by calling them, your physician's office can send your records, if needed or talk to the ER staff if they are not familiar with your condition to give them information. This way, everyone is kept in the loop, and your ER staff can get you the care you need.
3. Bring an Overnight Bag
Likely your ER visit will not be a short one. It could take hours, and even days if you are eventually admitted to the hospital. To prepare yourself, if possible before leaving for the ER, it is best to pack an overnight bag. If you yourself are unable to, have a family member or friend prepare one for you. When I pack an overnight ER bag, I make sure to pack the following:
Charging Cords and Backup Battery Pack
2 days worth of clothes
Toothbrush & Toothpaste
Snacks (in case you are allowed to eat) and Water
Device or Something to Keep you Busy
4. Bring Your Medicine Bag with Back Up Supplies and Meds
You would think going to an emergency room would mean all your medicine and supplies would be provided for you, but that is not always the case. Since being diagnosed with PAH, I have been to the ER twice, and some issues I have come across are: no spare Remodulin pumps available to program, different tubing not available for pumps, medications not available through their pharmacy, and no products to protect a site. Packing your med bag like you would for any other trip will make sure you get your medication and supplies to not disrupt your routine of what is currently working. Without your supplies, they may make you change your Remodulin sites (which they have tried before), take a medication that you do not normally take that is only available to them, or not be able to shower if you do not have your supplies.
5. Have a Copy of Your Recent Labs and Test Results
When you go to an ER that is not on the same system as your physician or if you get blood work from a lab center outside of the hospital, they may not have all the information from your latest labs and test results. My first time in the ER, the ER physician was going off 2013 labs (in 2018), which was the last results they had in their system. I have also had that ER claim I needed an invasive test done, which I had done 2 months prior, but only because they had no record of the results.
By being proactive and having a copy of your most recent lab work and test results, either as a physical copy, a copy on your phone, or through an app like backpack health or your physicians' system like MyChart, you can have the most recent information readily available for the ER staff to see and input into their system. This can cause less testing, less stress and a quicker diagnosis and help.
6. Have a Copy of Your Living Will (or Advance Directive as its called some places) and HIPAA Document
A question commonly asked when checking into the ER is - Do you have a Living Will or Advance Directive, and if yes, do you have a copy?
For those that do not know, a Living Will or Advance Directive (same thing, just called different names in different places) is a living document that tells medical professionals how you wish to be treated, in the case you cannot speak for yourself. Likely, this will come into play if you are unconscious or incompetent to speak for yourself to express your wishes. Wishes can include decisions on feeding tubes, do not resistant (DNR) directions, blood transfusions or taking extraordinary measures like what to do if you are in a vegetative state. This is an important legal document, that should be prepared by an attorney in the state that you live in, to make sure it is legally binding and effective in your place of living. If you are traveling outside your home state, these documents are still binding and will likely be followed by the physicians of that location. If you pack a physical copy of your living will the ER can scan and keep a copy in your file, or you can keep a digital copy and provide it to the staff.
A HIPAA document is something similar, but different. It is also a legal document, but this allows you to name certain people who are allowed to receive your medical information and medical updates. Without a HIPAA document, a doctor or nurse will likely not even talk to a family member of yours if you are over the age of 18. By having a HIPAA document prepared by an attorney and executed properly, you can name these people and have this readily accessible to give to the ER staff to know who they can and cannot talk to about your condition. Especially if you are not able to speak for yourself, having this paperwork allows the staff to know who they can talk to on your behalf.
7. Be Your Best Advocate
Last, but not least, the best way to prepare yourself for an ER visit is to make sure you have everything available to be your best advocate. This includes many of the items above, but also knowing information about your condition, expressing your symptoms, having an accurate timeline of when your symptoms or changes started, and knowing the care you deserve. You know your condition probably better than most general doctors, so you need to be prepared to speak up when needed to receive your best care.
______________________
Going to the ER is a scary experience for everyone involved. When you have a specialized medical condition, like Pulmonary Hypertension, that many do not know on a day to day basis, you should not assume that every doctor or facility will know the details of your condition or how to address those issues when something else is wrong. Hopefully by reading this post, you can prepare yourself for an emergency room visit, or prepare those around you if you cannot yourself. By being better prepared before or during your visit, you will hopefully have a more successful visit - one with less confusion, time wasting, a quicker diagnosis, and better care all around.
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