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Major Flare of Chronic SCLS

stedrick Message
6 Apr 2021, 11:40 AM

Saturday I had a serious SCLS flare isolating in Maine. ED labs reflected a BUN of 28.3 and a Potassium of 3.4. I was hugely swollen and markedly dehydrated. I seldom show abnormal H &H. No history of renal disease.
*Local hospital was unable to provide an early infusion.
*Per protocol I called the on-call oncologist at the regional referral hospital.
*Early Sunday morning, the on-call oncologist at MGMC called to say that early infusion wasn't available. there either. He was very kind and concerned, but was not aware of any resources that would get me infused there.
*Happily, I started to resolve at home midday Sunday. My Easter gift.
*I received IVIG infusion and hydration Monday.
*Working with staff at local and regional hospitals regarding any opportunities for weekend/holiday care.
*Good news; I am fully vaccinated.


DavidS Message
7 Apr 2021, 02:04 PM

So sorry for your distressing flare Susan! We live in the Adirondacks NY so understand the challenges of tiny rural hospitals. Hope you can set up a better protocol with the local and regional hospitals in the future. Best wishes, Rebekah S.