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Emergency Cornea Transplant, medical mystery (22 year old)

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  • Emergency Cornea Transplant, medical mystery (22 year old)

    Hi there. I am having a hard time thinking of how to tell me story but I feel it is one to share. I am going to do it with a series of dates, with explanations along side. It has been 10 months since all of this mayhem began, and I still have no answers as to why it happened to me, a healthy young adult. (22 year old female)
    I have alot of added stuff on the bottom, like techniques I have been doing to keep my eyes from drying out along with other things. If you have any questions dont be shy to ask - im sure I have left out alot and I am willing to help anyone out.

    May 27, 2011: College graduation. I was out for dinner with my family when my eyes suddenly became extremely red, itchy, and were oozing alot of mucus. I had figured it was allergies.

    May 30, 2011: I went to the hospitals emerge where the doctor didnt even look at my eyes or my ear and just prescribed me eyedrops for pinkeye and an ear infection.

    June 1, 2011: Blood began pouring out of both of my eyes and I rushed back up to emerge with my father. My eyes were so sore and swollen I couldn't open them nor could I even close them. I repeated that my eyes were bleeding to numerous nurses but none of them listened. I had a nurse poke and prode at my severely sore eyes and get mad at me for not being able to open them all the way. The doctor proceeded to do the same thing and then they finally referred me to the on-call Opthamologist. He told me that I had "Adeno-viral Conjunctivitis" and prescribed me Predisone: 4 drops a day in both eyes.

    June 20, 2011: I continued to see the Opthamologist on a weekly basis. Today he prescribed me Voltaron twice daily for 2 weeks in both eyes. He never told me to stop my Predisone drops, and of course I never asked so I continued to use both.

    June 26, 2011: I woke up in the middle of the night with my left eye leaking alot of clear fluid. I simply whiped it off my face and went back to bed. The next day I felt no pain but I noticed that my eye felt like it was "caved in". There was little to no vision and I could see a black mass obstructing my eye. Which we later found out that it was my pupil blocking a hole. I didnt bother going to the emergency room since they failed to help me out the first two times.

    June 27, 2011: I had an appointment already scheduled with the same Opthamologist so I went in with my mother and he proceeded to tell me my left cornea had perforated. He referred me to another Opthamologist to see if it could be repaired with glue but he quickly told us that I needed surgery, and fast.
    The unfortunate thing about living in Northern Ontario is the lack of doctors and resources we have. So we headed home, packed our bags and took off to London, Ontario - a 7-8 hour drive.

    June 28, 2011: Arrived at 2:30am. Had many doctors take a look at my eye and was sent to a room to wait for an organ donor. Had the emergency cornea transplant between 830pm-1030pm and received 8 stitches.

    June 29, 2011: My eye before surgery had zero pressure and the next day it had sky rocketed up to almost 50 which is WAY too high. The doctor spent the entire day poking my eye with an insulin needle to relieve the pressure and excruitating pain.

    July 3, 2011: Noticed my eye started leaking fluid again. I experienced what you call a "Cornea Melt". Back into surgery. Repaired the stitches, added glue and a contact bandage lense.

    July 6, 2011: I recieved some results from my physical. The "infection" in my eye didnt show viral, funagal or bacterial.

    July 8, 2011: more results. All other cultures, urine tests, blood tests came back negative. They tested me for all autoimmune diseases, stds, stis, and a list of other crazy stuff. Finally discharged from the Hospital

    ***
    Now, from between the last date and the next date we were required to travel down to London, Ontario every single week plus have appointments in our home town inbetween. It sucked. It was hot. We didnt have air conditioning and everyone reading this knows how much the sun affects you when you have sensitive eyes. I had to hold my head under a blanket the entire ride, in the heat.
    ***

    Aug 21, 2011: Some of the past trips I was also seeing an ENT because I was having reoccuring fungal ear infections, which started with the initial eye infections.
    This date I went to emerge for severe pain in my ear(AGAIN) and was hooked up on alot of drugs. (Fungal is BAD)

    Aug 29, 2011: I went to see an Allergist to try and rule out some possible causes as to why the hell this happened to me. Im not allergist to anything apparently but I get seasonal allergies. Try and explain that one.

    Aug 31, 2011: Prescribed Maxidex 2x a day, Polytim 2x a day, Doxycyclin 2x a day

    Oct 20, 2011: I saw a doctor in London the day before my third surgery. He thinks that the perforation was caused from a virus and the initial drops (predisone, voltaron) made my eyes SO dry that it caused everything to happen in the left eye.

    Oct 21, 2011: Surgery #3! Finally removed the glue and stitches but left the contact bandage lens on.

    Nov 3, 2011: Doctor removed contact lens
    Polytrim: 2x a day
    Maxidex: 1x a day
    Doxycylin: 1x a day
    Restasis in RIGHT: 2x a day
    Refresh Endura: both eyes all day
    Lacrilube: in both eyes at night
    * Doctor finally gave me permission to go back to work, exercise, drive, live my life again.

    Nov 20, 2011: Got hydrocloric acid cleaner in my left eye (surgery eye). Dont worry, there was no damage... thank God.

    Dec 2, 2011: Stop Maxidex and Polytrim.
    Restasis: 4 times a day in BOTH eyes

    Dec 16, 2011: Started taking Omega 3

    Feb 9, 2012: Punctal plugss put into bottom lids of both eyes

    March 21, 2012: Latest vision: 20/25 in the "bad" eye. For the longest time I had absolutely no vision. From nearly getting a glass eye, and then being told I will have little to no vision - im pretty pumped.
    Prescribed Maxidex again, once a day in my left eye. My eye has started to store lipids where the scar is and is making my eye more cloudy. We dont want another surgery so that is why I am back on Maxidex.
    I am continuing using Doxycylin once a day as well as Restasis 4 times a day in both eyes.
    I have decided to have my bottom tear ducts cauderized and we are going to put in the 100 day dissolvable plugs in the upper ducts in May.
    I have also decided to get tears made out of my blood serum.

    ***
    I know I have left out a ton of information but its been such a long "journey" that I try not to think about alot of it. I was supposed to be given a glass eye but I was lucky and they saved it. Doctors didnt think I would have very much vision and if I did it would be shadows or blurrs. I have blown everyone out of the water with my recovery and strength throughout this all.
    I suffer from very bad dry eye on a daily basis. Whatever initial infection I had in both my eyes are the beginning, really screwed me up. I do not produce enough of my own natural tears that I need to be pumping drops in my eyes constantly. Its extremely difficult to do. I am now 23 years old, I like to go out still with my friends and party and wear makeup and the last thing that is on my mind is to put my eyedrops in.
    I do use lacrilube in my eyes are night which is actually helps alot. I also have a coolair humidifier in my bedroom that I try to keep running alot - we heat my house by a woodstove so its incredibly dry (Canadian haha).
    Hmm what else. I just ordered my first pair of Tranquileyes and Dustbuster 1. I am actually extremely excited to try them out and knick this dry eye annoyance in the butt!! I will try to maybe organize this a little later, some replies and questions or even suggestions would be GREATLY appreciated!!

  • #2
    Wow. You have been through a tremendous amount. I wish I had something to offer you. Fish oil may help but given your unusual history, I'd definitely ask your doctor(s) before taking it. I use serum drops and love them. They need to be frozen / refrigerated so it's a bit of a pain but the benefits are worth it. Instead of eye makeup, can you wear a bright lipstick? Sometimes I do that when I want to wear makeup but don't want to deal with the fallout from wearing eye makeup. It's not a perfect solution but it's not bad, especially since you'd wear light eye makeup with bright lipstick even if you didn't have eye issues.

    What is Dustbuster 1? I'm thinking of a handheld vacuum but I'm guessing that's not what you're referring to =)

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    • #3
      The Dusterbuster is a set of, well like day to day glasses to wear around the house that have foam to trap in moisture. Said to be great to wear around the house especially on the computer etc. You can find them on www.dryeyeshop.com

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      • #4
        I am so glad your eye was able to be saved. Your story does make me despair a little though - it took a PERFORATED CORNEA before the doctors paid any attention. It does seem all forms of doctors, including ophthalmologists, dismiss ever single red/painful eye as some form of conjunctivitis/blepharitis or dry eye, until it is so clear that it isn't that a blind monkey could diagnose it from a hundred metres away. I hope the docs are doing their best to help you with the dry eye now, at least. Sorry I don't have many suggestions for you, except that if the lacrilube is helping, you might find genteal gel (or other gel) also helps you during the day, the gel does blur your vision more than the normal drops but not nearly as bad as the lacrilube.

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        • #5
          Wow, you have been through so much. I can only offer one thing to you from my experiences of dry eye. My problems began last February. Luckily, in December I saw an advert for a dry eye assessment at a local optometrist. I found out this optometrist had been on a dry eye training course. With her knowledge, she suggested some different treatments that have been quite effective. I first saw her in December and have seen her several times since. In the latest appointment, the outcome was basically that she's taken me as far as she can with her knowledge - so I really need to explore other avenues with doctors. There has definitely been an improvement since December but I'm not all the way yet. I would say this optometrist was more useful than the ophthamologist I saw in June last year, because the optometrist seemed to know more about dry eye than the ophthamologist.
          So all I can say is that I think it's important to get the right care from the relevant professionals. For me I want someone that I can work with, and get regular useful checkups on progress. I know now that I can't do it all by myself. For info, there is a section of this website on how to get better care from your doctor.
          PS not saying that you should try and find an optometrist with training in dry eye - my case is just an example.

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          • #6
            Thank you, Kozack, for talking about this; you are helping a lot of people, and doctors, this way.
            Paediatric ocular rosacea ~ primum non nocere

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            • #7
              Wow! what a nightmare with a positive outcome -- what should have been one of the happiest times in your life randomly skewered. I am so impressed with your determination and bravery in the face of such trauma. I am ecstatic that your vision is back and you're continuing to improve. Your experience is a true inspiration for hope.

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