Robin Bennett   Mike and Judith, in January 2010

Emergencies: Hospital and ER Return to Index
In the world of FA, trips to the Emergency Room (ER) and hospital stays are close to inevitable, so some heads-up about what to watch out for to avoid unnecessary protocols/treatments and stressing ANY FA heart with fluids are needed. The bottom lines are:
  • Too much and too fast on fluid intake or "release" can overstress ANY FA heart
  • Some FA'ers have measurable levels of Troponin at all times
  • An inverted T is normal and not actionable for an FA'er
  • All FA'ers need to be listed and treated as "cardiac/fragile" patients whether or not their hearts are symptomatic
  • Many/most FA'ers have a reduced lung capacity. In times of extreme sickness, especially the "flu", lung strength is really important

Two important FARA reference documents are the following:

"Just in case" IV
Your FA'er is in the ER or hospital and you see his nurse hanging an IV next to him. "What is that for?" you ask. "Just in case we need to give your FA'er meds or fluids" she/he replies. You respond, "My FA'er is considered a cardiac/fragile patient so set the drip for no more than 1 liter in 24 hours". Be firm.

In the ER for Tachycardia (fast heartbeat), blood pressure or chest pain symptoms (and possibly other symptoms)
Almost immediately the ER doctor will want to add fluids to reduce the heartbeat and increase the blood pressure, and will take blood to check Troponin levels (among other things).

  • Inform the doctor and nurse the FA'er is to be considered a cardiac/fragile patient and in the best of all worlds fluids should be added at the rate of 1 liter in 24 hours. If the need is higher than that then follow their cardiac/fragile protocol (and ask specifically what the protocol is for the administering of fluids).
  • Educate the doctor by pulling out printed copies of the FARA and FAPG web pages above. Advocate strongly for a conservative fluid protocol.
  • The ER doctor will be suspecting a heart attack/event if he/she is ignorant of FA and will want to launch into their heart attack/event protocol if the Troponin test comes back positive. Every FA'er should have their Troponin level tested as part of their yearly physical, and a goodly number will have an abnormally elevated level (normal is about zero). Save that result so you can now show it to the ER doctor. Most times the FA'er is not having a heart attack but "merely" Tachycardia.
  • The ER doctor may be concerned if the FA'er's EKG shows an inverted T. This is a characteristic of FA and not an actionable test result.

In this "Emergencies" section the main focus centers around IV fluid management and Troponin levels. For surgery concerns read the FARA reference documents cited above and the FAPG page regarding scoliosis.

What should I do!?
You should be ready with a hard copy folder or digital copies of the following (remember many hospitals do not allow flash drives to be plugged into their computer systems due to the risk of viruses):

  • EKG plot showing the inverted T
  • Troponin blood test result
  • "Pre-surgery issues to discuss"
  • Optional would be the rest of the reference documents

If you find yourself in the ER and desperate, call Paul 24/7 at 707-484-1415. He will connect your doctors with live FA doctor resources.

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