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What Things Have You Been Hospitilized For

What kind of things were you admitted for?  

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I have numerous Diagnoses including: POTS, Autoimmune Disorder, AV node re-entry tachycardia (which was ablated), irritable bowel syndrome , chronic inflamatory disorder, there are others but my latest is Reflex Sympathetic Dystrophy Syndrome (RSD) it is also known as Complex Regional Pain Syndrome. I have had apx. 18 surgeries for varies reasons, I currently am getting sympathetic nerve blocks which are helping to alleviate symptoms of my RSD. My 20 year old son was diagnosed with POTS in 2008 he was involved with Dr Chelimsky study on the link with dysautonomia & the affect on GI. In Sept 2011 my youngest son started having symptoms of POTS we are trying to get him in with Dr Grubbs (which is who my 20 year old & I see) but since it takes sooo long to be seen be him he is being cared for by U of M cardiologist.

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Hmmm? Let me count the times? No, lets not! Too many! GI infection initially for almost 3 weeks and was treatment resistant. Anemia. Uncontrolable seizure--maybe 5 different times at 3 different hospitals. Swallow syncope. Surgeries for central line, groshong, power port, heart monitor, and urethra widening. Blood infections. Low blood volumn. Blood transfusions. Kidney flushing. And some just to try to figure out what my crazy body was doing and lack of knowing what else to do.

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status epilepticus (unconscious, repeating seizures). The neuros never did figure out a cause, even though I was inpatient for 4 days (and this, only a month after a 6day stay). I underwent a lot of testing, and docs never found an area of instability. I suspect, in hindsite (that was 9 ys ago), that the seizures were probably secondary (to dysautonomia?).

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I've been admitted around 85 times since I got sick in 2005, mostly due to severe weight loss, dehydration, and inability to eat without going into shock-like episodes.

I have had a few hospitalizations for other things, like heart issues (finally had ablation in 2007), sphincter of oddi / pancreatitis / ERCP stuff, Addison's, and esophagus spasms / pain. But mostly, I've been put in to try and find a help to eat.


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Let's see...

... a couple of times for anorexia.

The first hospital was excellent but they didn't specialize in eating disorders so they sent me to a treatment center which wasn't so good, I left the treatment center AMA. Quite a shame as the first hospital really did wonders for me. If they would have kept me, a few more weeks probably would have gotten me on my way.

Second hospital (a few months later) was terrible. It was a "teaching hospital" and all they did was see the patients as guinea pigs. They didn't care what happened to the patients and didn't seem to have any plan for actually helping them. Patients were "healthy" when their insurance ran out. For the poor kids who were wards of the state, they were there for months and years at a time since the state kept paying. Let's just say some of what they did to us there can't legally be done to prisoners in the United States. Terrible experience, took me another year afterwards to deal with what happened there (thanks guys!) on top of dealing with the anorexia.

... a couple of times for cardio issues.

Mostly ER visits that turned into observations. Other than an arrhythmia, no problem found. Even with rock-bottom blood pressures & pulse, they never saw anything abnormal. At least the staff was always nice. After awhile I just stopped bothering to go.

... GI issues.

I stayed away from the hospitals for these. After all of the above experiences, I determined that hospitals are expensive places you go when you want to get sicker/die. If you want to stay well, stay out of the hospital. It's also much easier to refuse poorly-concieved procedures when you're outpatient. When the doctors say you have everything from cancer to celiac to Crohn's to liver failure, they're blindly throwing darts without thinking the mechanisms & biochemistry through. I decided to keep all of my organs and refuse their treatment, set up a small lab in my kitchen (thank God for my undergrad/grad degrees in microbiology & some med school) and managed to cure it with a few old medical texts and a little homebrew pharmacology. 5 years of **** reversed in 2 weeks of treatment. And that was 4 years ago, no relapse.

At this point in life, I'm ironically the healthiest I've ever been. Other than the dysautonomia, osteoporosis and a little dain bramage from the anorexia days, I'm perfectly healthy. Only the dysautonomia affects me in my daily life. The other two just make me be a bit more careful and take precautions. Compared to where I've been, this doesn't seem so bad.

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