How can I help Husband?

[Alice Blue]

My H is on a waiting list for a graft and his other eye is also deterioating now.

How can I help my H the most?
What can I expect from him? He is already really moody as he vers(?) from optimisim to pessimism and he doesn't want me to attend his appointments.

What questions should I be getting him to ask the consultant on my behalf?

[GarethB]

It is difficult, my wife wanted to help, but being very independednt I knew she meant well.

I was diagnosed at 17, but now in mid 30's when eyes deteriorated it hit me harder this time as I have responsibilities. You have taken the frist step coming here, but you could suggest this support group, I have found it really useful. My eyes have settled and I now have contact lenses again 17 years after corneal grafts which are not that horrific.

There are many people who get good results within days of the graft, but the eye does take time to settle. We are all different, but I believe a positive attitude works well. Hopefully ass soon as he gets the graft, he will see a big difference which will lift his spirits. There are several posts here where people have expressed concern about the graft and then post graft said it was not as scary as they thought.


Good luck the both ofyou.

[Alice Blue]

Thanks Gareth,

Yes, my H now has responsibilities which mean having an indefinite time off work is worrying and he is too independent to accept much help from me. He doesn't really want to talk about it. Now the operation is iminent despite being diagnosed at 16 (he is now mid-30s) he has pretended it was never going to happen.

Unfortunately he tends to look on the black side and his moods are rather confusing to me, one minute making plans such as more children etc the next seeing doom and gloom and telling me to get a job.

Do you have children? H has used it to escape all the night duties and early mornings - as his eyes get sore and I am permanently exhausted as a result.

I'm glad I looked at this site and hope to find out more, I need to prepare so that I can look after our child without any help when he is in hospital and recovering.

Cheers

[GarethB]

My daughter is 5 and I must admit, being off work the past 11 weeks has been brillient. I can now see again, my garden is looking good and I can fully enjoy my classic car. I try and ignore the fact I have KC and sometimes over do going into my hobbies. Not always easy for my wife as I say I will be 15 minutes and I will be in the garage for hours polishing a car I can not see too well!

My main reason for being off work, is with one eye, computers gave me a headache and I work for a drug company and could not see thed rugs I was working with! Nurse at work agreed with my concerns about being a health hazard.

I would give up night duties too, as I find artificial light to be a problem and car headlights are worse. My eyes got sore and tierd as you try and work them hard just to see a little bit. My wife gets tierd a lot too, butshe works aprt time and my daughter insists on playing with her in preferance to me. She has also allowed me to indulge in tidying the garden which is about finished. I gave her a break this weekend and took her to the Classic Car Show at the NEC where my car was on show, butshe got tierd at the end of that as there was not much for kids and my daughter wanted to play chase round expensive cars all day! She seems to have recovered now and I think she is looking forward to the new school term. At the moment she is at the school holiday club which does make things easier.

If the operation goes well, he should be home quite quick and be able to do most things. Driving might have to wait, it depends on the specialist you see and how quick the recovery is. After my grafts, I did and industrial placement year at Uni working down sewers and coal mines! Never had a problem post graft until now 17 years on and only in one eye.

How long until the op?

Hang in there.

Regards

Gareth

[Alice Blue]

4 - 6 months - he hasn't given a blood/tissue sample yet.

He's a bit of an ostrich on the subject, won't talk about it and wants to pretend it isnt happening.

Glad he won't be too disabled post-op. What about washing/dressing/ etc.

His work is close to a station so can take the train if he can't drive. It is office work though, so he needs to ba able to see quite well.

Thanks for explaining about night duties etc - I thought it was just another excuse.

Having a small child yourself - would you mind having one around post-op? I have to plan ahead if I need to arrange lots of outings!

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[Sophie Bull]

Hi Alice,

I thought I would write as I can see how difficult things are for anyone who is close to someone with KC. After a bad case of hydrops and deteriorating vision in my better eye I am currently waiting for my graft..9th of dec.my parents really want to come up when I have the op ( i am away from home at university) but I feel that having them both here may cause me more worry and I have lots of supportive friends and great house mates to help. I can see why your husband wants to deal with it all himself as I think that is also how I manage, but can see how frustrating this is for you.

I dont know what type of op your partner is having but Mine is going to be a deep anterior lemmellar keroplasty..take part of the cornea out and replace it with a donor cornea, but does not need to be blood matched. It is a general anesthtic but I will only have to be in hospital for one night and think the recovery process although is long in terms of getting much better vision is not so long for things to settle back to normal life. I certainly hope so anyway as I am mid way through my third year at uni and am hoping to contiue studying. I know this is not quite the same as having children, but i'm sure they will be a positive distraction.

Maybe your partner should talk to people on this site everyone has been so helpful and it really helps me through when im feeling bad about stuff and when im feeling positive too.

Sorry this was a bit of a ramble I do hope everything goes well.

Sophie

[GarethB]

As long as you do not get jabbed in the eye, having the little one around will be no problem. As there is no blood supply to the cornea, there is no need for tissue typing. The oxygen and nutrients come from a combination of the tears that flow over the eye and the clear jelly like fluid between the lens and the cornea.

I had only just met my wife after I had the second graft back in 1990 and we have now been married for 9 years. If your hubby is doing office work and using computers, many on this board and me included change the font size and brightness of the monitor. A larger monitor may help too, as well as changing the text and background colour to something more comfortable. After the graft, I did not have to do any of that, and modern computers are easy to adjust settings unlike the old 286 pc's I started working with!

I will see if my wife will post how she has suported me over the years, but until now post graft I have not had any problems and what I have now is ultra rare.

Regards

Gareth

[Susan Mason]

Alice

Has your husband looked at this site? Is he aware of it?
Maybe he would find it would be of some use to him and somewhere to say how he is feeling. I know I certainly don't always tell everyone how I am feeling whether it be my husband a member of the family or a friend. I sometimes think that as people cannot see anything wrong with me they feel I am just being ignorant or awkward however the reality of it probably is that quite a lot of the time I can't see that well.
I have turned into a bit of a recluse just recently, my husband is very supportive however I am sure he doesn't always understand my frustrations at no longer being independant. This is something which has only really come back on since May this year and despite it not being my first time not driving for a while it is still really difficult not being able to do things for myself.
Cooking is a nightmare however, I seem to manage most of the time although I now have a very short fuse especially when people don't put things back where they belong and I can't find them.
Looking for a black coat in a pile of dark coloured clothes can be a nightmare, especially when you live with two males who don't get the concept of coat hangers.

In the main I get by ok although I get fed up easily and frustrated at not being able to do things as I want to. Not being able to see to walk to school is bad and not many passers by assist, they just mutter at my hesitance at crossing the road, tricky when you can't see. Hopefully things will improve with the next lens however with it will come it's own set of issues. I too have to avoid late night, middle of the night or early morning child duties and that really upsets me. At 7 it is still me my little boy crys for however it is my husband who has to go and see what the mater is and then me who does the cuddling.

To get my lenses in I have to be up for at least 2 hours before I can attempt to put them in and that doesn't work in the middle of the night or if I have not had any sleep.

For a long while I thought all these problems were just me however many months reading others experiences in this forum have reassured me I am just the same as many others and just need to learn to cope as best I can.

Hope all goes well

Susan

[Alice Blue]

Thanks for the help - I'm loathe to show my H this forum after reading about Hydrops myself. DOn't know if he has ever had that. He has a date now and seems more comfortable with it.

The tip about computers I use myself as I find standard Windows layouts far too small for me and so dull!

He is worried but seems happier, would love to hear from your wife Gareth.

Best of luck to Sophie, going through it alone at uni, It's hard enough being a student without having a problem like this!

Alice

[GarethB]

Hi Alice,

Sorry I have not replied earlier, I have been gearing up to go back to work, start this Thursday and build up gradually.

My wife is quite happy to say how she has helped me, but she is modest and says she has not done much to help.

Glad to hear your H is feeling happier.

Gareth