Diabetic Retinopathy

[Calathea]

Hello,

Just joined. My husband (44) has T2 diabetes which is now under control (great HBA1Cs) however it never used to be controlled and last year he developed diabetic retinopathy. It's end-stage (stage 4 if I remember correctly), and there is so much damage to the retina in one eye that he can no longer see more than fuzzy blobs, we call this the 'bad eye'. So far he has had extensive laser treatment in both eyes and surgery in the bad eye. Until two weeks ago his good eye has been stable, docs have been happy with it etc. Two weeks ago he had large floaters appear in his good eye after he had a busy physical day at work so he got an emergency appointment at the hospital and they said it's a bleed from one of the blood vessels and that he has to wait for the blood to settle and be reabsorbed. Injections were mentioned as a possibility. It was settling until yesterday when he spent some time gardening, and now he has a large floater and webs right in the middle of his vision. He's at the hospital again on Tuesday to see the consultant.

He's petrified that he's losing his vision completely. We both are. He's a gamer and an IT nerd, plays board games, and plays Warhammer, but his entire identity will be destroyed if he loses sight. He's the main breadwinner, I'm unable to work full-time due to my own health issues. I'm worried we will lose the house if he loses his job. I'm terrified of the impact that this is having on his mental health. He's autistic and talking about emotions is near enough impossible for him.

I don't know what I'm asking. Why I'm posting. I'm just so lost and alone, no family or friends seem to understand. I'm trying to be strong for him but feel like I'm failing him. I don't know what our future will be like if he can't see.

 

[Vonny]

Welcome @Calathea though I'm so sorry you've needed to find us.
Firstly, you are not failing your husband! I know it's hard to see our loved ones suffer, but it's not your fault so please stop thinking you are failing.
It sounds like you have so much on your plate at the moment. Have you been to see your GP? You may benefit from some counselling with all you have going on. Alternatively you can refer yourself to IAPT which is a Talking Therapy NHS service, free, though there may be a waiting list. Just google IAPT and your area to get a number. Or your GP can refer you.
Re finances, though it won't be as much as a wage, your husband is likely to be eligible for PIP. It doesn't matter if he is still working; some of the people I work with still have a PIP to help them with the things they can't manage.
His mental health may be more difficult to manage. Does he have input from Autism services?
In your situation, I would reach out to as many services as possible as both of you clearly need some help. As I say, your GP is a starting point and can also signpost you to appropriate services who may be able to help.
Wishing you both well x

 

[Flower]

Hello & welcome @Calathea

I’m so sorry you’re both going through such a worrying time.

I’m living with the aftermath of sight threatening/ proliferative retinopathy. Similar to your husband I have a very damaged eye with no sight with central vision in the other eye. Just as I thought things were improving my good eye started to follow the same path as my damaged eye with numerous bleeds. Unfortunately dealing with retinal bleeds is a waiting game with nowhere else to look, waiting for the blood to be reabsorbed and waiting for further treatment. The hospital kept seeing me and said there were things that could help me but I was at the lowest ebb I’ve ever been mentally. It is very tough but there are treatments/injections/surgery and the eye hospital will do all they can to protect the vision in his good eye.

I know it is so hard but don’t despair about him losing the sight in his other eye. An operation called a vitrectomy removes all the trapped blood inside the eyeball jelly and replace it with clear liquid. This can restore better sight & should there be further bleeds the blood washes away quickly without obscuring vision for months. Having this done was such a huge relief to me.

Often there are notices in Eye unit waiting rooms showing local links to groups who can advise on low vision aids lamps/magnification etc and can advise on benefits that may be available. My Eye Hospital runs a low vision Clinic that is so helpful at providing advice & aids to living with reduced vision. The RNIB also offers help & advice on all aspects of adapting & living with sight loss and partial sight.

There is help and support out there, it can be a long bumpy ride with setbacks getting to a more stable place with sight and adapting to the new you. You’re absolutely not failing your husband it’s so challenging trying to remain optimistic but from my experience there is help & hope out there and hopefully at his next appointment he gets some better news of how things will settle down. Wishing you well.

 

[everydayupsanddowns]

Welcome to the forum @Calathea

So sorry to hear about what a difficult and stressful time you are having.

Hope the appointment goes well tomorrow, and that a treatment plan can be put into place to stabilise things, improve his prognosis, and slow any further progression.

I hope you have found it helpful to share your situation among people that ‘get it’, and have some inkling of how you must be feeling.

Hang in there, we are all rooting for you both.

 

[SB2015]

Welcome to the forum @Calathea . I am pleased that you have found us and have reached out.
I am sorry to read of the many difficulties that you and your husband are experiencing, and I hope that @Flower ’s info gives you some hope. Let us know how the appointment goes.

 

[silver minion]

Hello @Calathea . I am pleased you have found and joined the forum. You and your husband are having to deal with a lot with very scary possible outcomes. We all give you our support and those with similar eye problems can share their own experiences. I hope the information will help and your GP can put you in touch with the right agencies to give you both additional support. Best wishes