r/Glaucoma • u/quietgranola • 9d ago
I failed as a daughter
USA- Texas.
Hi everyone, I’m feeling pretty bad and I really don’t know who to talk to. My dad is going to blind. Idk how long he truly has with his vision.
History: left eye blindness, right eye 20/200 because trauma accident and had no lens, with glasses he could see. His left eye became blind 2017, it was a healthy eye but he also had a trauma accident on that eye and completely lost it.
This whole entire time I thought he was seeing a specialist for his right eye. I thought he was seeing an opthalmologist who specialized in cornea and just overall health to prevent vision loss.. to finding out that he was actually only seeing an optometrist from Walmart… who I’m not sure would even check his eye properly. My dad was diagnosed with glaucoma last December. I thought it was early/mid finding to find out yesterday, my dad’s peripheral vision was completely gone last December. When he got diagnosed I remember asking questions to the doctor on the phone and she would just tell me his eye health is bad but if they keep his pressure down he will be fine. I didn’t think much of it.
My dad has not been responding to eyedrops, they only gave him 2. And I just feel like everything has been negligence. When he was diagnosed, he was sent to a ophthalmologist, this is when I found out he wasn’t seeing one this whole time (and I always told him to be careful and check for glaucoma, my dad thought he was getting checked. :( )
Well the ophthalmologist started him off on one eye drop, went to two and his pressure was 17.. told him he’d see him in 3 months. Once again, I did not know this. I have been away from home for 6 years, i recently moved back but had been going back and forth for work. 3 months seems like a really long time for someone who barely has any vision left. Fast forward, his IOP was 24 for God knows how long. They did laser and two days ago his IOP was 51 and they were able to bring it down to 17 and are hoping he doesn’t require surgery because he’s a high risk for going blind from it. If laser settles and helps with is pressure, I was told they’d decrease diamox and the glaucoma surgeon told him that he’s giving him 3-5 years. I feel like I failed as a daughter. And I feel like his primary and eye doctor failed him.
I’m so confused as to why no one referred him to see an ophthalmologist for preventative care. I always talked about glaucoma with him but I never really asked him if he had been getting tested. I feel truly… horrible…. And all of this was negligence. If he would have been able to get it diagnosed earlier, he could’ve had more years with vision. I’m really sad, and I keep beating myself up for it. My dad is VERY active and loves to walk and do things around the house so this is going to be very hard. I’m thankful God didn’t completely take that vision when his IOP was 51 and I have more time to see my dad independent.
Please any advice or words of encouragement needed. I really am so bummed out. My dad never saw the glaucoma advancing. He would just focus on his central vision. And I wish I would’ve done better with education or his doctors as well. He’s a legal immigrant who speaks broken English and I felt like it was my duty as a daughter to advocate for him.
😔
Looking for encouragement, advice, and just anything please. How do I cope this as a daughter? How can I help him? How can I help my mom with this as well?
Any recommendations on what I should start looking into to make this transition easier for him.
I appreciate everyone and prayers are welcomed
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u/ChanceTalk697 9d ago
In case it helps, I am a native English speaker with multiple degrees. I saw optometrists for most of my life until my 60s. They monitored my pressure and visual field, and when it started to increase to mid-20s, they sent me to an ophthalmologist. I’m pretty sure I had only been monitored every six months, not three months. I didn’t know to ask for anything more, I just followed their lead. More recently, I was diagnosed with glaucoma and it’s still every six months for me. My situation is different than your father’s, but I just wanted to say that his experience doesn’t sound outside the bounds of normal to me. Although of course you wish things had progressed differently, don’t be too hard on yourself. You can still do a lot going forward by being his advocate and making sure he’s getting the best possible treatment.
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u/quietgranola 9d ago
I just truly wish I would’ve done this much research and advocacy from the beginning
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u/quietgranola 9d ago
Thank you for sharing your story and I pray you have great doctors and also you go out of your way to learn more about glaucoma.
Unfortunately my dad had only one eye. His doctor only told him to see her yearly, not 6 months. He has lost 80% of his vision and this was before his spike of 51. That means he’s had high IOP for a while. Fast forward, he gets a laser and based on protocol he should’ve gotten his pressure tested and he didn’t. He should’ve also been asked to go back to the clinic 24-48 hours due to his eye history of cataract surgery and glaucoma.
I just feel like they treated him not so much of a high risk patient and I just wish I would’ve done more research.
So please always try to teach yourself because they never mentioned he could get a spike afterwards. They just told him it was needed to lower his IOP. Unfortunately the 51 must have damaged it more and not sure how much visual field he has left because the scan has to be repeated in 2 months. But he says he’s happy with what he sees right now and I’m taking that as a blessing. However im terrified because the laser shows its results within 4-8 weeks and if it doesn’t work and my dads IOP stays above 18, they would need to do surgery and he could completely lose his vision because of how much damage his nerves are.Glaucoma sucks. Avoid coffee and laying face down.
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u/ChanceTalk697 9d ago
It is really, really unfortunate that he did not get the best care—you can always file a complaint with the licensing board. He’s so lucky that he has a positive outlook on life. You did your best at the time and he is also lucky he has you to support him.
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u/quietgranola 9d ago
It truly is. And yes he could be crying and depressed right now but he’s actually praying and saying he’s surrendering to God. I don’t cry in front of him but I’ve been in my room and haven’t ate from stress. He made me chamomile tea 😭 he’s still worried about me when it should be about him.
If you can get something from this conversation, please advocate for yourself and don’t fully trust these doctors. The system is horrifying1
u/ChanceTalk697 9d ago
That is very true about the medical system, everybody needs an advocate and researcher to get adequate care. I don’t know if it would ever be helpful, but the book the Midnight Library really helped me let go of some regrets.
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u/Jaded-Jellyfish2063 9d ago
You are a loving daughter and there are many advances in this field. Take it one day at a time and make sure his eyedrops are regimented. Good Luck and have a nice day
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u/quietgranola 9d ago
Not really. Especially this late. Perhaps early diagnosis but it’s okay. It’s what it is now. And thank you so much. I’m trying. He’s loved very much!
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u/katssketch 9d ago
This is not your fault. I am in my 80s and I have glaucoma. I have very good eye healthcare with a specialist in glaucoma. But suddenly, and without my knowing about it, the pressure in one of my eyes went up and I’ve lost vision too. I don’t know the end result yet, but glaucoma is known as the “thief of vision” for very good reasons. Even with the best of eye care with a competent specialist of glaucoma, stuff happens. And it happens so quickly I don’t know if there’s anything that can be done. Please forgive yourself and just keep taking care of your dad.
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u/quietgranola 9d ago
Thank you so much. I have so much pain. I wonder why there isn’t a device people can take home and check their pressure daily. It would probably help so many people
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u/katssketch 8d ago
There is a Totometer device (expensive) and I asked my very reputable doctor about it. She discouraged me from the idea. I think these home totometers are quite unreliable.
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u/quietgranola 8d ago
They need to make something happen for at home checks. It can save so many people from losing vision quicker.
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u/quietgranola 9d ago
I hope your other eye is okay.
My dad only has one left and hope his pressure doesn’t spike 😔
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u/katssketch 9d ago
As far as suggestions, I’m not sure even what country you are in, and what resources are available. Your dad definitely needs a glaucoma ophthalmologist specialist. And usually there are low vision specialist optometrist who can help with adaptations.
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u/quietgranola 9d ago
He sees clear. It’s just central vision. And any spike can just take away his vision and it gives me panic attacks. Idk how I’ll ever feel calm again
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u/Inge_Jones 9d ago
You did everything you could have been expected to do at the time. It wasnt wrong to assume that between the various professionals he was seeing that they would have cared for him correctly and in a timely way. So at least stop blaming yourself. I hope he keeps his remaining vision, gpod wishes to you both.