Today is International Rare Disease Day. Please donate to TMSforacure.org or NORD so rare diseases can be better understood and treated. I thought today was a good day to finish this post:
I hate going to the ER. No one likes going to the ER, but it seems Mast Cell patients like it even less because it is a treasure trove of triggers. (try saying that ten times fast) It is full of people wearing things which can trigger further health problems for me. Cologne, perfume, deodorant, some soaps and hand sanitizers can set me off, not to mention the reactions I can have to basic medications.
But my doctor requires me to call 911 any time I use my Epi. He would like me to use my Epi more often than I do. Instead I hesitate because several times when I have used my Epi the EMT's have not treated me kindly.
When the EMT's last arrived and I explained what was happening, they said I was having anxiety, not anaphylaxis and offered to leave me at home. They tried to convince me. My blood pressure was fine at this point, and due to having used my Epi I was no longer wheezing and my dry cough had reduced to almost nil. Plus there was no swelling which they usually expect in Anaphylaxis. I showed them some pamphlets about MCAD and told them that no, swelling doesn't always happen and yes, I would be following my doctor's orders and going to the ER thank you very much.
In the ER they told me that yes, I had done the right thing, and a very nice nurse name Rachel helped me out. They gave me 50 mg IV Benadryl, some Solumedrol, and ordered the tests on the prescription I always carry from Dr Lewis. As soon as they were able to move me out of the hallway they put me in to a more private area. I wore my Respro mask the entire time that I was in the ER, but while I was there I started to flare back up two times. First when the Epi was wearing off, and and secondly when someone came up to me putting a very strong smelling, alcohol based anticeptic on their hands and then touched me with it.
Alcohol can trigger me. My eyes burned and my throat felt tight, it became difficult to draw breathe in, and they decided to give me more epi. I have to wonder if the EMT was right in a sense, no I was not having an anxiety attack, but maybe I would have been safer at home. I wish more people knew about mast cell disorders so that people like me could feel safe calling 911 or going to the Hospital.
Please pass this on to raise awareness.
I don't know how long you have had this condition. I just came over from your link on Artist's Journal Workshop Facebook page but I see you depend on Benadryl a lot. My nephew did too for an acute allergy to milk. Liquid Benadryl saved his life many times until it stopped working (now he carries Epi pens). Everyone was shocked when it stopped working but I guess his body built up an immunity to it after more than 10 years of use. I just want to caution you so you can watch for this. Perhaps it will never happen to you and I hope it doesn't.
ReplyDeleteThanks. I have several medications I use. Benadryl is one of my rescue medicines. I also have hydroxyzine for slower reactions and always have Epi within an arms length. I will do a blog entry with an update. Sorry for not getting back to you I have been horrible about blog upkeep obviously
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