{"id":1076,"date":"2020-03-18T20:20:30","date_gmt":"2020-03-19T00:20:30","guid":{"rendered":"http:\/\/www.dysautonomiainternational.org\/blog\/wordpress\/?p=1076"},"modified":"2020-03-19T16:27:41","modified_gmt":"2020-03-19T20:27:41","slug":"accessing-medical-care-during-the-coronavirus-pandemic","status":"publish","type":"post","link":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/accessing-medical-care-during-the-coronavirus-pandemic\/","title":{"rendered":"Accessing Medical Care During the Coronavirus Pandemic"},"content":{"rendered":"

We’ve received inquiries from dysautonomia patients who are having a hard time accessing their normal medical services and providers during the COVID-19 pandemic. Many healthcare\u00a0facilities\u00a0are postponing non-urgent appointments, surgeries and testing in order to minimize the risk of exposing patients and medical professionals to COVID-19.<\/p>\n

Additionally, many medical professionals are being called to duty to serve\u00a0individuals who have been severely impacted by the virus, or the are very busy answering many questions from their own patients. Please be patient with your healthcare providers at this time. They are facing the same challenges all of our families are struggling with, in addition to trying to serve their patients.<\/p>\n

As much as possible,\u00a0we should all\u00a0avoid visiting hospitals at this time for non-urgent situations. Not only will this protect you from unnecessary COVID-19 exposure, it will also protect others in case you may have COVID-19 (you can infect others even if you don’t have symptoms). Read the CDC’s advice<\/a><\/span><\/strong> on what to do if you think you or a member of your family may have COVID-19.<\/p>\n

\"Medical_Care\"
\n<\/a>
\nDr. Jeffrey Boris, pediatric cardiologist and Dysautonomia International Medical Advisory Board member, offered to answer some of the more pressing questions we are receiving from our patient community.<\/p>\n

Q: I can’t get the IV saline infusions I have been receiving. What should I do?
\n<\/strong>A: It depends on how you have been getting the infusions.\u00a0 Some people get them at their doctor\u2019s office. Some get them at an infusion center. Some get them at home.\u00a0 If you have been getting them through your doctor\u2019s office or through an infusion center, speak with your provider and see if the infusions can be set up for you through a home health prescription.\u00a0 It may take a bit longer to start, as the provider will have to get insurance approval. I would recommend against routinely going to your local Emergency Department for infusions, due to the risk of infectious exposure. If at all possible, you should increase your oral salt and fluid intake to compensate for the saline you are unable to receive.<\/p>\n

Q: I can’t find the electrolyte drink I usually use. Is there a recipe\u00a0for a homemade\u00a0electrolyte drink?
\n<\/strong>A: You don\u2019t necessarily need to have an electrolyte drink.\u00a0 If you are taking in adequate amounts of fluid (2 to 3 \u00bd liters\/day) and the equivalent of 1 to 2 teaspoons of salt per day through your food, that is actually quite good. There are salt capsules, such as Salt Stick Vitassium<\/a><\/strong><\/span>, that can help.<\/p>\n

A\u00a0homemade\u00a0electrolyte drink\u00a0can\u00a0be a large glass of water with a little flavor, a little salt, and a little\u00a0sweetness (to take advantage of the sodium-glucose pump, which helps you absorb fluids from your\u00a0gastrointestinal tract into your bloodstream more efficiently). You can experiment with different combinations until you create a drink that you like. Here are some ideas.
\nFlavor: fruit juice, citrus, ginger, berries, melon or cucumber
\nSalt: any salt will work
\nSweet: sugar, honey, or maple syrup<\/p>\n

You can find Dysautonomia International’s salty snack and\u00a0meal ideas here<\/a><\/strong><\/span>.<\/p>\n

Q: I can’t get refills of my medication at the local pharmacy. Any ideas on how to get common dysautonomia medications without leaving home?
\n<\/strong>A: A number of insurance companies have a mail-order option, in which you get a 3-month supply sent directly to your home. Check with your insurance plan to see if this exists for you, then have your provider order it as a 3-month supply through the mail-order group.\u00a0 Make sure that you get the name of the mail-order group working with your insurance company so that you can pass it on to your provider.<\/p>\n

Q: I can’t get my\u00a0fludrocortisone (Florinef)\u00a0prescription refilled, but I can get licorice\u00a0root. How much licorice root should you take to equal .1mg of fludrocortisone?<\/strong>
\nA: The short answer is that we do not know.\u00a0 Licorice root is a supplement that is not overseen by the FDA, nor has there been adequate scientific study of it or its effects. Since it\u2019s not overseen by the FDA, the amount (or contents) advertised on the bottle may not be what you\u2019re actually getting. Also, the cleanliness of the plant as well as the supply chain of ingredients may be in question.<\/p>\n

Q: I can’t get my midodrine prescription\u00a0refilled, but I heard phenylephrine (Sudafed-PE) is a similar drug. Can I take this while my midodrine is out of stock?
\n<\/strong>A: Although phenylephrine is similar to midodrine, it\u2019s not the same.\u00a0 All of the research that has been done with it in POTS patients has been using intravenous infusions.\u00a0 Thus, we do not know the appropriate dose, much less how long it would work.\u00a0 The side effects associated with chronic use are also not known, except for rebound nasal congestion.\u00a0 I would recommend against using this as a substitute. Consider using compression stockings (20-30 mmHg, waist to toe) while awake instead.<\/p>\n

Q:\u00a0My physical therapy appointments have been cancelled. What exercises can I do at home?
\n<\/strong>A: The modified Dallas (Levine) exercise protocol is available through the Dysautonomia International website<\/a><\/strong><\/span>. In general, you want to exercise recumbent (reclined, not upright, such as recumbent bicycle, swimming, or rowing machine), starting with 10 minutes per day, and increasing until getting to about 60 minutes per day by the end of the second month. You should be exercising about 5-6 days\/week, which is a lot, but is very important to reduce symptoms. You should also be doing exercises to strengthen your core and leg muscles. With continued exercise, many people start to feel better by month 3-4. Exercise like this should be maintained indefinitely. Patients often state that they feel bad if they skip more than 2 days in a row. If you do have to skip, due to illness, back up 1-2 weeks in the protocol, and then pick back up.<\/p>\n

Q: My psychologist\/psychiatrist appointments have been cancelled. Where can I get mental health support at this time?
\n<\/strong>A: This is a difficult problem. I would definitely recommend contacting your psychiatric provider\/counselor to find out how they are specifically the managing care of their patients. Some may be able to care for you by phone, others by Skype or FaceTime, others by a specific telemedicine link. Recognize that, due to everything happening in society at the present time, they are going to be overwhelmed with many patients requiring their attention, so try to be patient as you (and they) navigate this new, but temporary, reality.<\/p>\n

In the US, your local affiliate of the\u00a0National Association of Mental Illness (NAMI<\/a><\/strong><\/span>) may be able to suggest alternative local resources. 7 Cups<\/a> <\/strong><\/span>is a free online source\u00a0for emotional support.<\/p>\n

If you missed our recent webinar, Coronavirus Q&A for the Dysautonomia Community, sign up for the Dysautonomia International email list<\/a> <\/strong><\/span>to receive a copy.<\/em><\/p>\n

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We’ve received inquiries from dysautonomia patients who are having a hard time accessing their normal medical services and providers during the COVID-19 pandemic. Many healthcare\u00a0facilities\u00a0are postponing non-urgent appointments, surgeries and testing in order to minimize the risk of exposing patients and medical professionals to COVID-19. Additionally, many medical professionals are being called to duty to … Continue reading Accessing Medical Care During the Coronavirus Pandemic<\/span> →<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-1076","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/1076","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/comments?post=1076"}],"version-history":[{"count":5,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/1076\/revisions"}],"predecessor-version":[{"id":1082,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/1076\/revisions\/1082"}],"wp:attachment":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/media?parent=1076"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/categories?post=1076"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/tags?post=1076"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}