I was recently in the hospital with what I felt was a CLS attack brought on by the E. coli the emergency room doctors found in my stool. They told me that I just got extra sick because of my weekend immune system. I was never treated as it was like a attack the emergency room and floor doctors refused to listen to my concerns about CLS. I was never given any of the IV protocol that my doctor normally followed. 

I am in between specialist at this time. The doctor that has been caring for me for the past 16 years has taken a research job which I personally feel in the long run will be good for a lot of people, but unfortunately not me. By the time they got the oncology hematology doctorson my case I had received so much fluid that I asked them to turn it off due to painful swelling. I was lucky my kidneys were shutting down but came right back. hydrated me.

By the time the hematologist oncology staff we're treating me, the other doctors decided I was well enough to go home even though I was still having diarrhea. My question is how should I handle these situations if it happens again. I wasn't thinking I guess I was so tired Each doctor thinking their specialization had it covered that I just wanted to leave. Probably wasn't in my best interest as I am already having issues again.

Thanks in advance 

Ritz

Hello Rita, you should again look for a general practitioner, a family doctor, who preferably works in a hospital in your city, where they have your medical history and who can contact you whenever you need it. It may not be easy, but your previous doctor could recommend you to a colleague.

Ritz,

Well, yes, this is a relatively good problem to have. Compared to the situation 2 decades ago, when a diagnosis of SCLS was essentially a death sentence, most SCLS patients are now able to live for decades beyond their first episode – so much so that our trusted and caring physicians are retiring before we die, and when they do we rightly feel abandoned and fear for the continuity of our care. But at least we are alive!!!

I have a few related suggestions. First, let your most knowledgeable physician know you worry about the continuity of your care, and that if and when he/she plans to retire or move on, they will need to give you advance notice so that together you can transition to finding, meeting, and educating another (presumably younger but qualified) physician. (I realize, this piece of advice comes a little late for you.)

Second, let your most knowledgeable physician know that he/she should formally, in a piece of official stationery, provide written instructions for the continuity of your care. These can be entered into your official records and be printed out for you to carry with you always, including on your phone, ready to be shown to the Emergency Room’s triage nurse and on-duty physician. These instructions should include: (a) what tests to run and measurements to take to confirm that you are having an episode of SCLS; and (b) what medications and in what dosage you should be given how often to help you survive your episode without any damage to organs or limbs. (It's probably not too late for you to obtain such instructions.)

Third, carry with you in electronic and/or printed form the one or two articles that best describe your condition and that spell out what to do about it in case of an episode, see for example https://rareshare.org/topics/2192

And fourth, make sure that you never go alone to the hospital. We all need a clear-minded and duly informed relative, friend or neighbor who can advocate for us, help tell or confirm our story, and make sure that nurses and physicians are listening and doing their reading (e.g., of our doctor’s instructions).

Arturo