I was infected in my eye while culturing a patient. The virus was mutated and had Type 1 & 2 in it. It caused Keratitis, then spread to my brain causing encephalitis, and put me in a coma for a month. Afterwards, I went blind and my cornea tore off my eye. I get seizures and have brain damage (memory loss, balance issues, sleep apnea/narcolepsy, and have spastic swallowing). My immune system was destroyed and now I need IVIG monthly to live. I cannot work or drive, of course. I lost my job, my money, my house, my friends, and my independence. I was only 41 when this happened. I just wanted to find out if anyone else can relate to my story. I feel so alone.
Ocular Herpes Simplex - I am a Nurse Practitioner and got HSV at work?
Question posted by rxrmom on 20 May 2014
Last updated on 18 September 2016
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Answers
DzooBaby
21 May 2014
Ocular Herpes is a nasty, nasty infection and sounds like you really got the brunt of it! How did it happen that you got infection? Were you not wearing eye protection? Did you start Valtrex as soon as you got exposed? So sorry this has happened, My story isnt quite as dramatic and thank goodness I can still work as a Case Manager from home! I used to work in the OR until I hurt my back. I do miss the patient contact. I still talk to them on the phone but it is different. You do have to develop new skills all the while you are losing others. I really miss starting IVs! lol. You just have to come to accept your new limitations and make the best of them. You have a lot of knowledge stored up in your head. Have you looked into consulting or even Case Management? Disease Management? You can do these over the phone and on a computer like I do. It was a Godsend because I can no longer work the floor anymore. I cant stand long periods of time, at home I can get up and stretch when needed or even lay down a few minutes if I need to. It pays a fair amount. Not as much as working the floor perhaps but it is certainly better than disability or nothing at all!
rxrmom
21 May 2014
I worked for a clinic whose population was patients who had no insurance, patients in poverty, etc. They had little money, although I was paid well? There were NO goggles at all in the clinic (although HSV cultures are usually very painful and yield very little fluid, but being that this one was mutated it burst upon touch). I got 2 drops in my left eye. There was no mechanical eye wash. I had to flush it manually. Yes I did get medicated immediately, but my IGG antibodies didn't elevate to fight the virus, probably due to the mutation or overload. It replicated like crazy though. No, Worker's Compensation does not help people like you think it will. I woke up from the coma with brain damage and I was discharged and told that W.C. had no ophthalmalogists or neurologists and I had to wait five months for my medications to be reinstated. I had such extreme eye and head pain and the fear of the virus spreading.
I had to wait until I could find my own doctor that they would cover and with my brain it took five months, and even then it was a struggle. They refuse everything. Right now the only doctor I get is a chiropractor, which is the last thing I need. I have gotten no reimbursements or settlements after 8 years. I get food from the church for my 2 kids. I am a divorced mother. Life is really bad right now. It is a lot of pain and no purpose. But I have to keep going until I get a settlement for the kids.
SoloCher
8 April 2015
I have suffered with this also since I was about 20. I am now 64. I had never been treated with Valtrex and that upsets me to no end.My last out break was August 2014 when I was treated with Valtrex. It healed in record time and the doctor was impressed. Ya... I spent 5 days with my head under a pillow due to light sensitivity. Then both my eyes had glaucoma and were "done". That was my second transplant of the cornea. This last one also had a problem with the stitches coming out before their time. Had to get help from the College of Physicians and Surgeons to get it fixed. So I have had my share of hard times with this disease. The excruciating pain and the stigma. What a way to live!
I am on a disability pension so I cannot work... I am now fighting to heal an L1 fracture that happened over 2 years ago. It was partly caused by the anti-rejection drugs I have been on for years for my eye and a doctor who cut my calcium in half due to the bones growing in my right foot. He should have left well enough alone..rather send me instead to surgery.Same numb nut doctor who failed to take an x-ray when I fell... even after many visits to complain. I will be on a bone strengthening med for the rest of my life and puts me off the scale for another breakage. It is such a tangled mess.. The doctor thinks I received this in utero. My Grandfather on my Mom's side had shingles and I gave it to my oldest son. The gift that keeps on giving... I am thankful that it never reared it's ugliness for Valentines Day as I was forewarned. I am only affected from the bottom lip up and it did not affect my other eye. Small mercies but ever so grateful.
kaismama
21 May 2014
Welcome. You can feel at home here. Several of us are nurses who had to either alter our practice or quit working because of chronic problems. Unfortunately when we develop problems we find out who our friends are. I hope workers compensation is helping you.
lfallain
18 Sep 2016
I am a retired RN who was infected by two patients with herpes on their mouths within one week of each other. The patients both had significant infections. One male had open draining pustules that encompassed his entire mouth. I have occasional breakouts in the corner of my mouth on the right side. It's the only spot where I breakout. It starts by tingling, then the skin starts to split and becomes very painful. It stings when I eat, and I can't open my mouth too far without more splitting. My Doctor does prescribe Valtrex which does help. This current breakout is going to need another dose as it hasn't cleared up. I certainly am not suffering as others on this site. My heart breaks for you all.
Related topics
ocular herpes simplex, keratitis, herpes simplex, coma, brain, herpes, eye, encephalitis
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