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Re: CD oddity

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I haven't been active in this group since June. After a wonderful July Fourth party, I began vomiting. I assumed that I'd somehow come into contact with gluten, although I'd been very careful. I told my husband that I'd have to wait it out; there's nothing that has shortened the gluten-vomiting period for me, in the past. This time it felt different somehow. After 24 hours of almost continuous vomiting, I suddenly realized I needed help immediately. I was at Sea Ranch, at least 2 1/2 hours from UCSF. We decided to just lock the doors, pile me into the car, and drive, rather than waiting for an ambulance or helicopter. We figured that on a holiday weekend there would be accidents, many people who would have a more serious need than mine, that I just needed rehydration. (Later, a local firefighter I ran into told me this was a poor decision, that vomiting can be a symptom of a heart attack, that getting to a medical facility with an EMT alongside me would have been far safer, and that they don't provide the service unless it's needed. She was right. We subscribe to two helicopter medivac "insurance" plans, incidentally.)

By the time we reached the UCSF ER, I was only intermittently conscious. I remember a moment inside an MRI, but nothing else until the next day. I learned that my problem wasn't gluten ingestion, but a rather unusual condition that had forced almost all of my stomach through my diaphragm into my uppe

r chest, collapsing a lung. It had happened sometime earlier, without symptoms until that day. I'm fine now, healing from a four-hour operation called a giant paraesophageal hernia. Fortunately, UCSF has a team of surgeons who are familiar with this operation. I spent nine nights in the hospital, narrowly avoiding a tenth night. I read later that people who are asymptomatic, as I was, have a 25%-50% chance of dying of gangrene and sepsis. If the stomach torques before surgery, mortality is pretty near 100%. The hospital bill, which is completely covered by insurance, was more than $100,000.

Why am I telling you people all about my recent health problems? Because I finally got around to asking a doctor what caused this. She said it was a result of the

intense, body-contorting, prolonged bouts of vomiting I've experienced in recent years -- from celiac disease. (I've become very sensitive to the smallest trace of gluten.) Sometime, perhaps during a violent CD episode in May, the stomach left its accustomed site. Should you have this sort of vomiting frequently, be aware of the small but real possibility that your body could be damaged in this way or some other. Some people, like me, have no warning symptoms other than vomiting. Another risk factor for me is having taken Prednisone for years; Prednisone tends to weaken muscles, including the diaphragm.

I know this isn't a pleasant post to read, and odds are that my condition will never affect any of you. I considere

d not speaking of it, but I decided that having this scrap of information stuck away in the back of your heads just might prove useful some day.

Incidentally, this episode convinced me of the value of my recently purchased medical ID bracelet from MedicalID, which is the one UCSF recommended. I didn't want a bracelet, but my doctor was insistent. If I had not been with my husband, who was able to give my medical history, ER admission and treatment would have been difficult. (My husband keeps a list of my medications on his IPod; I set up the list to show not only what medicatons I take but in what quantities and at what ties of day.) I ordered a jump drive from the same source; it is formatted to let me enter my medical history. I haven't filled it out, but I definitely will. Also, the MedicalID bracelet has a registry function, so a doctor could call for added information if you weren't able to speak -- assuming you'd completed the registration, which I haven't. I will, I will.

I hope there is something useful in this long post, that it serves a larger purpose than to talk about my medical problem!

H.

-----Original Message-----

From: bea pix <beapix@...>

SillyYaks

Sent: Mon, Aug 3, 2009 6:47 am

Subject: [ ] aunt gussie's choc spritz cookies

check out

recipes on my blog for a gluten free vegetarian italian

festa:

phoney

bolognese pasta sauce, garlic italian bread, lasagna

more

tomorrow!

http://www.wheatlessandmeatless.com/

--

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