My Story of Presumed Ocular Histoplasmosis

  • Left eye with 20/400 acuity – legally blind in this eye
  • Right eye with 20/20 corrected acuity – one treated blind spot with one sleeping spot in the central fovea
  • Field of View Screening exams – Passed and hope to keep it that way!
  • I have never received treatment other that laser (no eye injections).

I hope you found my page on Presumed Ocular Histoplasmosis of some help to you. If you would like to add a link please let me know. And please, drop me a note and tell your story!

I do not live in the Ohio Valley, nor have I been there, but I managed to “pick-up” the fungus somewhere when I was 21 years old. I was born and raised in central Alberta and I have, like others, discovered the not-so-pleasant effects of this fungus.

While sitting in my nursing class in Edmonton in 1981, I discovered some distortion to the vision in my left eye. It didn’t take long to get into an Ophthalmologist and I was examined and sent home with blood thinners and a new prescription for eyeglasses. I was told to come back in one month.

Well, he’s the specialist and I did what he told me to do – I filled my prescription for the medication and glasses and carried on with my schooling. Little did I know that my retina was haemorrhaging a little more everyday. I did notice that the distortion was a little bigger towards the end of the month but I didn’t know what to expect. I went back to see the specialist and I restated what I had told him a month previous and that the distortion has not gone away but has gotten bigger. When I saw the look on his face my heart dropped to my stomach and I realized that he didn’t listen to what I told him one month earlier. My vision had deteriorated needlessly.

This time, he sent me immediately to the Retinal Unit at the Royal Alexandra Hospital. I had laser surgery and was sent home. Due to continuing activations, I had to return to the retinal unit a couple of times within that year for more fluoresceine angiograms and laser surgery.

The laser acts in two ways:
1. it stops the bleeding under the retina, and
2. it causes damage to the retina in order to stop the bleeding and itself causes blindness.

I now had no central vision in my left eye. All activations have been cauterized. And I was told that my right eye would never be affected. I carried on, grateful that I had one good eye left.

I was in and out from seeing the ophthalmologist and I think I went for 4 years without an incident. I kept track of my vision on my Amsler grid daily.

I think it was 1994, about eight months after moving to British Columbia when the bad news came – my right eye was now affected and I required the laser to stop the bleeding. The doctor says that I also have a spot in the right eye that is located dangerously close to the fovea and if it activates they will be unable to laser it without me losing all my central vision. This will leave me legally blind in both eyes. Thank goodness I can still drive my car.

Since that time I have had one other trip to the eye clinic in Victoria for treatment and multiple visits where I left happy knowing that all was ok. I continue to have annual visits to my Ophthalmologist and the occasional check-ins when something doesn’t seem quite right. I sure do appreciate having a great specialist in town and a retinal clinic an hours drive away.

When I hit 40 years old my vision changed, as expected for most people. I now needed to remove my glasses for reading. Since then I have had multiple prescriptions for single vision glasses as my vision gets worse as I get older. It’s a pain reading, or doing other close-up work, and working on the computer sometimes because it’s a constant taking off the glasses and putting them back on, and it can be a strain on the eyes.

Why don’t you wear bifocals you are thinking? I rely on my right eye (although not perfect), and my peripheral vision in my other eye to see where I am stepping, so a bifocal would affect my vision when I look down. It would be especially hard on the uneven ground, which I have a hard enough time walking on.

I have been fortunate compared to others who have POHS and I feel for them. It has been about 20 years since my last activation but I still live day to day. I could be blind tomorrow but I try very hard not to think about it. I have always tried to carry on without thinking the worst. Of course, I have had to adjust my career path a few times but I am pretty good at finding other things to do. It’s quite easy when I have so many interests. And I have fought the suggestion from others that said, “You can’t do that” or “How can you do that if you are blind?”. I am not blind yet and I am not going to live my life like I am blind now. But there are some things that I really miss like playing baseball in my younger years, losing the enjoyment of walking on rocky beaches or hiking on uneven ground, or really seeing the stars in the night as most others do (I still look to the stars and always will). I still visit the seashore and walk down forest paths just not quite as enthusiastically as I used to.  You can’t stop living. Don’t miss out on the beauty of our planet! I always appreciate the things I see and get quite overwhelmed with the beauty because some people can’t see what I can see.

Not everyone will experience continued activation. You could end up with long-term inactivity as I have. Let’s hope it’s that way for you. But then again, tomorrow could bring on a whole new chapter.

Be well and keep in touch.

Jackie

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6 thoughts on “My Story of Presumed Ocular Histoplasmosis

    1. Hi Melinda.

      Sorry, I am unable to answer that question as I live in British Columbia, Canada. However, if you are on Facebook there are a couple groups that I am connected with. There are many from the US in both groups. Hope that helps. Good luck.

      – Icare/POHS Presumed Ocular Histoplasmosis Syndrome Community.
      https://www.facebook.com/Icarepohs-Presumed-Ocular-Histoplasmosis-Syndrome-Community-261820490562529/

      – Presumed Ocular Histoplasmosis Support Group
      https://www.facebook.com/groups/216590706014/

  1. My journey with Ocular Histoplasmosis began in the spring of 2010. I always like to sit in the backyard with my 3 dogs and enjoy all the changes of the season. I’m just taking in the trees starting to bud, the grass greening up and the spring bulbs popping up. This particular year I was having issues with my eyes, my tear ducts were clogged, I had abrasions across my eyes and I wasn’t seeing things so well. In a few months time I had gone to the eye doctor multiple times usually on a weekly or bi-weekly basis. I would always tell them, my vision isn’t so good but I couldn’t articulate it any better than that. Then I remember once when I was outside looking at a tree the trunk looked zig zaggy instead of a straight edge and I thought what the heck. I thought it was something to do with the sun being in my eyes. At night I would wake up and look over at my alarm clock to see the time and I could only see a pinprick of red instead of all the numbers. I would bolt upright and see and read it fine. For some reason it still didn’t hit me what was wrong. But like I said all during these months I was telling the techs at the eye doctor, I’m not seeing right. One night, I was laying in bed trying to figure out why sometimes I see the alarm clock numbers just fine and sometimes I don’t. And finally it dawned on me. I could see it when I sat straight up in a panic because, I was laying with that good eye down in the pillow so as soon as I pulled my head up I could see. My right eye was bleeding and all that blood was pooled behind my retina causing blindness. So that morning I got right in to the doctor, it was July 9th, (my birthday so I’ll never forget) and I was finally able to explain something more than I can’t see well. That was the day I got the news. He said you have Presumed Ocular Histoplasmosis Syndrome and went into all the detail of how I might have gotten it, what is going to happen next and so on. After he was done with his information sharing, I said doctor could you repeat the name of this disease again, I’d like to research it at home. He said to me, “Oh you don’t need to know all that, you’ll never remember it anyway.” I’m still in shock over that statement. A person who has a disease that will make them blind will remember the name. Anyway, they rushed me into a Retina Specialist the following day and they did more tests and sent me home with antibiotic eye drops and I was to return the following day for Laser surgery and an Avastin injection in my right eye. The doctor was a jerk and the injection was extremely painful. I felt every bit of it and it’s supposed to be painless. From what I understand they lasered a well around the pooling of blood so it would stop there. Eventually the bleed did stop but everywhere that the laser hit is scared and blind, all my central vision in the right eye. I’ve had bleeds in that eye since which I guess doesn’t matter because of the damage that is already done but the doctors do OCT scans every 6 months to see if there is any bleeding in both eyes because we are trying to be proactive and try and save the vision in my good eye. I had my 6 month OCT scan a few weeks ago and found that my good eye was bleeding. Again they are sending me to the RS but not for 2 weeks. I was so scared, came home and cried all that day. As much as you think you have prepared yourself that it’s a possibility that you will be blind, it is still a hard pill to swallow. By the time I got to the specialist this week, the bleed had stopped in my good eye, and started in the bad eye. This is a roller coaster ride for sure and I’ve always hated roller coaster rides but I’m doing my best to hang on tight. A week from Monday a reporter from the local news is coming to interview me about this disease. I have mixed feelings, I don’t want to be on TV, I feel like a dork, etc etc. But I am looking forward to getting the word out about this disease and the fact that I don’t feel like doctors know enough about it. Also I want it known that these injections are not a cure, it’s not even FDA approved for this application. They are using it in an off label application, the drug is meant for and approved for colon cancer. I’m starting to sound resentful now, so I should close. I go back to the specialist in 8 weeks, wonder what will happen…

    1. Thanks for visiting Margie and for sharing your story. Wow, that’s quite the journey. I am sorry that you have to deal with this.

      In today’s rush-rush society I think we have to be proactive in our health. We have to do our own research and to ensure our health care providers listen and understand what we are telling them. Sounds like your treatment may have been delayed because, like in my case, they just weren’t listening. It’s very unfortunate. And waiting 2 weeks to see a retinal specialist in my area would be unheard of as it would generally be the same or a next day visit. It’s our vision that is deteriorating and disability rises with each leak. Our vision is precious. But we appear to be just a number in the system. Keep on them.

      Even though the laser is effective in stopping the bleeding it is very unfortunate for us that it also causes more blindness. I believe this is the simplest, less painful, and effective method, but we have to weigh the costs. If I required further treatment in the future, and my leaks were more peripheral, I think I might consider the laser over the injections. We are quite behind here in Canada compared to the US when it comes to some medical treatments and when my last episode occurred the Avastin injections were not even in use. I can’t say I like the idea, and I had no idea that treatment is not FDA approved! Yikes!

      Well, I like the idea of you doing an interview and getting the word out is important. I try to inform others via Facebook and Twitter but unless someone is affected by the condition they are not likely to read it. A TV documentary on the other hand may open some eyes, if I may use that expression. Come to think of it, I am quite surprised that we have not seen a documentary on POHS since it is so prevalent in the mid-west US. I understand that many, many people are inflicted with it. This would go far in educating others, especially for those who may be at higher risk. Maybe your TV interview could lead to something very good? I understand you would be nervous but why not just ask to have your face blurred out? We see that often on documentaries. But I say good luck for sure and let me know how that goes please.

      By the way, I really believe a clock in the dark is an excellent way for anyone to determine if there are issues with their vision. But, everyone does have a small blind spot that is off to the side a ways and it’s from the optic nerve. In our case though, I think I can say the spots are generally more towards the central vision if not near exact central. It wouldn’t be so bad for us if it would go more peripheral.

      Be proactive and don’t second-guess yourself when it comes to your health. If you think something is wrong get it checked right away. I look forward to hearing more about your journey in the future and I really want to hear more about your TV interview 🙂 All the best, Margie! Drop in anytime.

      1. You are welcome, Margie, and thanks for stopping by. As I say, feel free to keep in touch. A lady named Torey shared her story on my POHS page at the bottom, if you haven’t seen it already. Do take care and thanks again!

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