C-Diff delayed diagnosis

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becburt
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C-Diff delayed diagnosis

Postby becburt » Fri Jun 17, 2016 10:40 pm

I am STILL frustrated over the years (5) that I spent on the brink of death when every time I went to a doctor or hospital (from complications), I came out more frustrated and without a diagnosis. I am an oncology certified nurse who worked with c-diff patients on a daily basis. I was dubbed the isolation queen and worked for 5 years in "Isolation Alley), on the oncology floor on which I worked. I became so sick so quickly that the neurotoxins in my brain turned my brain to mush. I should have known what to ask to be tested for but I was too sick at the time and IT WAS NOT MY JOB! I had such terrible healthcare that I would find another profession if I were well enough to work. I received diagnosis of " All in my head, manic depression, among others. I was told by the compensation judge that " I did this to myself". It was told to my family after a stay in the hospital due to collapsing on shift with a BP of 70/30, that I was simply abusing drugs. ( I also have ankylosing spondylitis made worse by c-diff and they did MRI of lumnar spine when the disease attacked my SI joint. I was arrested for dui 2 times within a month due to slurred speech, stroke and low bp dizziness, passing out, seizures etcv. i was pulled over for other things and thrown in jail. Both were eventually dismissed since I had no substances in my system. I thought I would die in jail,(5 days for dui in total isolation). I was treated as if I were detoxing and they took my matt and blanket over something stupid and left me to shiver having not eaten in a year by that time. I have many long term problems that are debilitating and have yet to see a dime of any compensation, disability or even any assistance! My career choice ruined my life and I am so broke that I have lost everything. My house goes up for tax sale in 2 months and I have paid it off twice! Anyone else had this much trouble due to c-diff?

georgina
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Re: C-Diff delayed diagnosis

Postby georgina » Sat Jun 18, 2016 1:52 am

Becburt
Welcome to the site.Please read the first forum for rules of posting.
I'm speachless!! We all had a really rough time with Cdiff , some of us still have but nothing like you describe.It breaks my heart reading what you have been trough , it's really sad.I'm a nurse too , i have worked first in ICU then moved to the surgery floor , was suspected of TB and got sick with Cdiff (worked alot with Cdiff patients) , depression , anxiety , and now got moved to ambulatory in the endocrinology office.
I too take antidepression and antianxiety meds . I'm so sorry you for what happened to you , life is not fair!! Please know that we are here for you!!

Bobbie
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Re: C-Diff delayed diagnosis

Postby Bobbie » Sat Jun 18, 2016 1:53 pm

Sounds as though you were abandoned by the health care field, co-workers, family and the legal system. Most of us have had some of the same experiences but not all you have.

Please know we will support you. Perhaps when your house sale is over, you can find a smaller residence where you can rest and recoup.

Again, so sorry. Best to you.

kayron
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Re: C-Diff delayed diagnosis

Postby kayron » Sun Jun 19, 2016 10:00 am

My heart goes out to you. I am not in the healthcare field but I had a hard time getting diagnosed. I had to practically harass the doctors to diagnose me. They told me I was having panic attacks and it was my nerves too. Since you worked so close with people that had C Diff, it looked like that would have been the main suspected illness. I have been sick since January and I have lost my job of 22 years. They say they are letting me go due to lack of work. I am still taking Vancomycin and will taper off of it. The next step is a FTP. I hope things get better for you. This is an illness that needs more attention than it is getting as it is life threatening. I live in the US and I had never heard of C Diff until I got it.

Lisa33
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Re: C-Diff delayed diagnosis

Postby Lisa33 » Mon Jun 20, 2016 12:58 pm

I am so sorry to read all of this, Bechurt. You have really been through so much. It sounds like you have really been not been given the proper medical care that you deserve. Have you checked under the "doctors" forum at all? There is a list of doctors by state that have been recommended in treating c-diff and do perform FMTs. I am not sure if you are still fighting c-diff, but if so, you may want to look and see if there is anybody close to your home.

It really stinks that we have to really educate ourselves and be our own health advocates and truly shop around for the best doctors and specialists. You need to get better healthwise and focus on that. Having to sell your house is definitely not fair, but your health is the priority. Once you are feeling better, you can make everything else fall into place. C-diff has really turned your world upside down, but you have to take control of the situation and get yourself healthy and back to enjoying life again.

I hope they come up with a cure or prevention for this God awful illness soon.
Lisa

roy
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Re: C-Diff delayed diagnosis

Postby roy » Mon Jun 20, 2016 1:08 pm

Possibly you might need to look for other causes of your problems.
C.diff does not produce neurotoxin, it produces enterotoxins and cytotoxins.
Toxin A especially is far to large to pass into the blood and cause problems there.
You don't mention if you had classic c.diff symptoms or what treatment you had or if you ever had a positive c.diff test.
I hope the future can be better.


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