Update reappointment with Eye Consultant post cataract surgery.

[KnitSewPurl]

Dear All,

Photo is my quilting of my current quilt I am doing very slowly due to my eyes.

Just to update all of you . Yesterday has been a horrendous day for my husband and I after spending nearly 6 hours at the hospital we left our home at 7.45 for an appointment for 9.15 only to be seen at 11ish after multiple test , after test and then seeing 2 consultants not 1 but 2 Specialist!and left the hospital at 3ish . Warning this might come as a moan. When i had my op(2months ago) I knew there was something wrong with my eyes no one believed me only my husband did . I went into emergency dept eye casualty they put the blame on my migraines. But I knew there was some thing else going on.

So , what they found was there was damage on the cornea and flap also the lens is not fitted properly . how annoying is that . Knowingly when I am seeing multiple images and seeing light from above . Bodge job !! Yes , I told them I went to cas and they put the blame on migraines!!

So they are going to get another specialist to see what they can do will see . My eye was in agony after all that yesterday and it was itchy as well. and swollen.

Had cold press last night just to cool it down in order to sleep .

So to put up with my dodgy eye until I see the next doc. Thankful that they actually found out something was wrong that I am not going crazy 🤣. and also thankful I still have one eye that is good in my vision. certainly not letting any one touching it!!

Also has anyone recently had their blood test result with a very Low CRP levels (meaning almost normal) of mine came back very low readings recently. which I thought was very odd but still presenting lupus spots and pains my CRPs used to be around 15 - 18. but is just dropped to 8 recently which is quite odd.

Have a great weekend everyone and enjoy the sunshine 😊 try not to get burnt lots of suncream 😅

[Hidden]

Incredible craftsmanship and someone who can barely sew on a button I’m in awe of your skill.

[KnitSewPurl in reply to Hidden]

Thank you its destressing takes all my worries and I am in my own world here . Love it in my creative world 😍 😅

[Oshgosh]

That’s so frustrating and upsetting Did they say if the problem with with your eyes was there before you had your cataract done?

How soon is your appointment with the next Dr ?

Hope you managed to get something to eat and drink during the course of the day ?

We aim to get to hospital early,so that we can have a bite to eat and some tea. We always take bottled water and mints, biscuits.

I know it sounds like an expedition list,but you just never know how things are going to work out.

We also take a list of questions,sometimes it’s hard to remember everything..

We have 2 copies,husband keeps one in case I lose mine.

I’m sorry to ramble on.

I really hope things start to improve for you.

[KnitSewPurl in reply to Oshgosh]

problem occured after cataracts op. they found a couple of issues on the cornea and the lens is also not fitted well either. it is sitting proud which another why reason why, my reading is readable - pinhole there was no way I was able to ready any other way.

massive bodge job by trainee doctor who was not supervised properly !! Not impressed at all. yes whilst they have to learn not to the expense at damaging a patient 's cornea .

no indication as to when . I have a booked phone consultation with my GP this week so it is going to be very interesting conversation with her.

yes we did manage to get some lunch after couple of test and 1st appointment with consultants then after lunch it was further 2more test then we saw further consultation . with additional consultants .

we wait and see According to them corneal specialist will be emailed about it so will see how long it will take.

hope you had a fab weekend and enjoyed the sunny weather. 😊xx

[svfarmer]

Love the quilt you are working on, it’s beautiful . Thank goodness you listened to your body and knew something was wrong with your eye. Hope you and hubby are chilling out today xx

[KnitSewPurl in reply to svfarmer]

We did had a layin this morning cuppa tea in bed laze around late breakfast went into town did some essential shopping, went to hobby craft got my foam boards. 😁 I am upto mischief with my craft work ...

[Spanielmadlady]

Wow that quilt is absolutely stunning 😍. Sorry you endured such a bad day yesterday .I hope things have settled abit and you dont wait too long .Happy crafting xxxx

[StriatedCaracara]

Quilting is brilliant - Beautiful and so massive too.

[StriatedCaracara]

I take food too, and hot drink and before my appointment quietly work through a People's Friend Special - Puzzle section - takes about an hour, but some I can't do like cryptic cross word.. I make it into a challenge to do all I can before the check time..

With eyes I find the worst time is after the tests whilst waiting for results to be reviewed and to see eye doctors.

Because of the eye drops dilating pupils I can't do puzzles or read anymore, as eyes still a blur. Also can't go for walk as nurses at the desk - on the way in stop me leaving.

I usually end up trying to have conversations with others - asking them where they have come from etc..we are all generally in the same boat...maybe there are some games that could take in next time...

After seeing consultant, I then usually get a hot drink and rest a bit before heading home..

[Betty909090]

Beautiful quilt! 😚👏

Thanks for posting.👏

My own eyes are suffering with cloudiness of the lens and have been told that I’ve got probably, Prednisolone induced cataracts.

Haven’t seen an ophthalmologist now for over 3 years!😢

So sorry to hear about the botched op. Most tell me that lens replacement ops for cataracts are usually 100% successful but?!

Hope you get a good eye surgeon.

OUR eyes are so precious.

Would be too scared to have an eye op even if it went right? Have already got maculopathy in both eyes so have stopped the HCQ. Having a phone consult with GP so will have to ask for a referral.

Xx

[KnitSewPurl]

well ,Let me put it this way, I did not have much choice on the matter on the day as the person who was doing it was a junior trainee doing it when I got there so was not aware that it boss was not doing it . Unlike when you go private you get the boss doing all your surgery and you see the Consultant himself and never his underlink. this is one mistake made , I learn now and wish that I should have gone private !! Having a cataract op should have been a straight forward op . My late mum and grandmother both had both their eyes done this was in the early 80sand 90s . My mum had Stargards and cataracts in both eyes saying that the spot in one of her eyes were right on the retina that made her blind in that eye . So, yes , I have also Stargards. Get your referrals sorted out decide where and which hospital you want to be treated research well where you want to go to .Do not be afraid to get your treatment done . Just because of my hiccup.

[KnitSewPurl in reply to KnitSewPurl]

As for macular , they need to check if you have toxicity in your eyes before they can stop Hydroxychloroquine. they cannot stop that just like that just because they 'think' it cause macular they need to be absolutely certain that that is the cause by the drug or toxicity.So that was my argument when I was asked to stop Hydroxychloroquine. many years ago . when they found macular in my eyes they stopped it with out my consultants knowledge- when my consultant came to know about it she was not happy . from then on this was the argument lay out ground rule is they need to find toxicity only then they can stop the drug.

[Betty909090 in reply to KnitSewPurl]

Thanks for posting. I appreciate very much your getting back to me.

I’m a complicated case.

I’ve also got diabetic maculopathy (both eyes) and around 3 years ago before covid lockdown/neglect? I had an eye appt.

Was on HCQ 2x200 mg /day and a

young Greek ophthalmology registrar confirmed my maculopathy plus laser treatment scar tissue. We both agreed that to be on the safe side I should reduce my HCQ dosage to just one tablet.

But he could NOT decide whether the maculopathy was due to HCQ toxicity OR diabetic maculopathy (due to many years of poor BG control? I admit this.

Having not seen an ophthalmologist for >3years and having had diabetic eye screening recently confirming maculopathy (more serious than background retinopathy), I simply cannot risk my eyesight anymore.

My reasons:

My kidney function is good, my lupus nephritis, DLE, SLE seem well controlled, the MMF 2g/day +Pred 1mg/day seems to be working and the Royal College of Ophthalmology says HCQ toxicity to the retina is often overlooked and underestimated so I’ve stopped taking HCQ.

I’m a great believer in cutting down on my drug cocktail in the mornings ie lowest or no dose with maximum effect. Apologies to those who still are on HCQ and depend on it.

But I shall be putting these same arguments to my GP phone consultation in two weeks’ time.

I can imagine her “umming and anhing” (as she always does) but hopefully she’ll get me a consultant ophthalmology appointment to put me out of this dreadful dilemma 😢.

Just hoping!

All the best and thanks again for your thoughts.

The eye dept here is pretty good here but there is an absolutely huge backlog of eye appts plus a massive wait for any f2f with my GP.

Fingers crossed my lupus doesn’t flare with all the stress of waiting?

Xx