Life Change / Adjustment

[Nyasham]

Hello to you all.

Its been very educational reading this forum. I have learnt a lot.

I do not have Glaucoma myself but my husband was diagnosed a few years ago. He is 38 & we have 2 small children.

His left eye has some irrevesable damage , the right one is ok . Hes has laser on that eye but pressures are still high so they mentioned that he might have an operation & maybe have to inform DVLA. They gave him more eyedrops . Hes got an appointment in 2 weeks

Besides the day of his appointments he rarely talks about his diagnosis - but he mentioned that he is scared one time. I do support him by reminding him to take eye drops etc but i wonder if there is something else i can do.

He just carries on as normal. Think he prefers it that way. He shows so much strength meanwhile i cant stop worrying. Which makes me feel so guilty. I however dont show him that i worry as i dont want to stress him out.

I currently Work part time & he full time. Truth be told i am so scared we might lose our home etc. Should i suggest we start making adjustments for the future or should i have more faith and let it flow. We cant afford me going full time due to childcare costs.

I am so sorry for the rant or if i sound insensative.

[Hidden]

Hi Nyasham welcome to the group. Does your husband have open angle gluacoma. I was diagnosed last year and was very scared. Still am tbh with you. All I can say is continue with the drops and never miss appointments. There are so many lovely people on here who have had glaucoma for years and are still carrying on with the way their lives were before. It’s just best to do as all the medical staff tell you and I’m sure things will be fine. They can do so much now. Take care and once again welcome to the group

[Nyasham in reply to Hidden]

Thank you Julie . Yes he has open angle glaucoma. I will surely do keep encouraging him to keep on with his eye drops.I hope you are well yourself with such a recent diagnosis. i can imagine its so hard to deal with at times especially mentally. I read somewhere on this group that a cure is a decade away which gives me so much hope for you all. 💚

[muddledme]

Hello Nyasham,

So sorry that you are so worried about your husband's glaucoma.

I think we have all probably been worried at times about the diagnosis.

One thing that has helped me is to find out as much as possible about the condition.

Glaucoma UK has excellent leaflets and regular informative magazines.

They also organise regular webinars which are often in the evening and available online afterwards.

The Glaucoma helpline is very helpful....ph....01233 64 81 70

It is worth finding a good optician so you can discuss problems. My optician has taught me a lot. If your husband is happy then you could both attend his appointments at the hospital.

It is helpful to have a notebook to remember to ask questions and note down any changes etc.

There is often an eye clinic liason officer attached to the eye OPD. Another very helpful source of information.

My open angled glaucoma was diagnosed about 6 years ago . I had two stents (drains) put in during Covid and found the NHS excellent throughout. My eyes seem stable now and I hope that I follow my mum who lived well for about 50 years after her diagnosis( until 91 years ! ) and following two eye operations .

You have already found this forum which is such a useful source of information.

Best wishes to you and your family

[Nyasham in reply to muddledme]

Oh wow i had no idea there was a glaucoma helpline. How amazing. Thank you & for sharing about your mum. Its encouraging.

My husband’s glaucoma was diagnosed at an opticians and was refered to a consultant at the hospital, since then he doesnt go to the opticians anymore. Should he be having one ? He last had a change of eye glases a year ago. I think he just assumed he doesnt have to go anymore

Unfortunately I havent been to any appointments because of covid restrictions & bless him he just knows the pressures are high not as much detail i have seen on this forum.. like actual figures etc. … and he is in the medical field 😁 I think he is in a bit of denial..

[Positiveannie in reply to muddledme]

Hi thereIt is so comforting to have a group like this, it really helps in times of need thankyou

[Eahldt]

If he can still see well then he’s probably not thinking about his glaucoma too much and getting on with his life which is good. As long as he receives and accepts treatment he will hopefully not lose more sight. Current research indicates that prospects for future treatment for someone of his age are looking good. I do think, however, that he should keep up with optician’s appointments as his eyesight could change irrespective of the glaucoma. Once diagnosed with glaucoma you’re entitled to a free annual check up. So will your children be when they reach the age of 40 (if that’s still in place) but I guess they’re a long way off that!

[Trish_GlaucomaUK Partner]

Hello Nyasham,

It is a worrying time especially if you have a young family and you wonder what the future holds for your husband, but it sounds that he is being closely monitored.

The most important thing to remember when you have glaucoma is to comply.

Taking the drops daily as prescribed by the consultant and attending all of the appointments is paramount for the treatment of glaucoma. Its good in a way that your husband is carrying on as normal. It could be that he is worrying but doesnt want to show it that same way you are. You ask if there is anything you can do. You are supporting him and making sure he puts his drops in as prescribed so you are doing a brilliant job.

[rhys1234]

I would support what has already been said.

In addition, I think both you and your H would benefit from you seeking his permission to attend the appointments ( or at least the next one ) with the specialist Consultant.

Make a written List of what you need the answers to, which I think is headed by :

1] What kind of Glaucoma does H have ?

2] What is the Prognosis for him with this Glaucoma, specifically is it likely to stabilise now with the drops treatment?

Or is it more likely to deteriorate over time and is there a risk of actually going blind in one or both eyes ? If there is such a risk what is it ? 1 % ? 50% ? Or what ?

I hope that you are worrying unnecessarily about this prospect, and you may well be.

But only the Consultant can give you the most reliable answer to this.

Many people do live for many many years with Glaucoma stabilised.

My mother had hers prescribed in her 40s I think it was, and she was still able to read right up to the end ( aged 95 ). So this was even before modern treatments.

I was diagnosed fifteen years or so ago, and am not aware of any actual sight deterioration since diagnosis.

My treatment has simply been the Drops once in each eye at night, plus monitoring every six months by the Consultant.

Every three years ( so far ) I have to undergo the DVLA eye test to get a three year DL, but so far that has not been a problem ( most recent one a couple of months ago ).

By the way, you might also wish to look up online the qualifications and experience of your H's Consultant. The hospital s/he is based at may well have an informative website but even if not just searching the name online may give you some reassurance ( they don't get to be Consultants straight out of med school ).

Also the hospital website may well give an email address for the C's secretary. Useful if you need to clarify anything post the next appointment with the Consultant.