The waiting is unnerving

[Ayayay80]

I was diagnosed with AMD at the optician in the middle of June but was told I needed no treatment yet and was not referred. I took things into my own hands and finally got a hospital appointment on the 12th August. after an examination and scan it turned out that I have wet AMD in my left eye and dry in the right. I still need to go back for the fluorescein angiogramphy but no date was given. I was told they contact me. Why was this not done on day of the other tests? Is there any chance that the fa and the treatment are given on the same date? My eyesight is getting worse and I am worried since two months have gone by since the first diagnosis.

[Hidden]

Hi ayayay, so sorry to hear of your experience, waiting is very nervewracking. Firstly, well done on getting the hospital to review the opticians opinion (I would inform optician manager of actual diagnosis as there may be feedback the optician needs).

Secondly, 're the dye test - my clinic only run these 1 day a week, I had to wait too. As you say, you are already delayed so I would ring your clinic and push for an appt date on that basis.

Contact the Macular Society as there are timescales clinics should work to and the Mac soc will give you the right info to help you. They also offer lots of other support you might find useful.

0300 3030 111

I don't think you will have inj same day as dye test as that is part of the diagnostic testing and helps determine what exactly you have and need (they thought I had wetmd but it was something else). The time between dye test and appt with consultant to set treatment schedule should be short, again Mac soc can advise.

It is all very scary and once you are told you have a deteriorating condition of course your focus is on getting treatment so you should push but if you can try not to get stressed as that will not help you (easier said I know!).

Wishing you all the best and sending a hug x

Come back here and tell us how you get on, we will support you in your journey, you are not alone.

[Ayayay80 in reply to Hidden]

Thank you so much for your support, eyesright. I have just phoned the appointment department at the hospital to check if an appointment had been made for me for the dye test. They could not find any evidence of this anywhere, but the receptionist told me she will email another department and I should get a letter from them soon. Oddly enough, they already had a date for my first injection, so they told me, which is scheduled for the 31st August. Surely the dye test should be done before that date.

Yes, it is scary, though I am regarded by my hiking friends as superwoman, too independent for my own good, always refusing support, recceing lots of walks on my own and being 4 months short of 80. But the thoughts of needles in my eye make me quiver in my hiking boots, though I am not a whimp, having gone through cancer many years ago without support.

This is the first time in my life that I find I have the need to talk to people who have personal experience of the various conditions and treatments and who know what they are talking about. So I gladly accept any advice and support.

[Hidden in reply to Ayayay80]

Hi ayayay, have a look at YouTube - search for the video of the eye injection. It's an American clinic I think but you will see the patient is very relaxed and doesn't flinch. It helped me to see it and although I was (and still) a bit apprehensive in the last few seconds it also eased my fears greatly.

No two inj are exactly the same and varying discomfort, often none, afterwards but there are solutions (see other posts on this forum).

Good for you making the most of life, that positivity will serve you well on this journey. I wear overglasses with side pieces when outside the first few days after inj - don't need to be in the wilds to get dust in the eye! We all need to avoid infection.

Will think of you on the 31st. X

[andy1955 Macular Society]

Hi Ayaya,

Eyesright's post is spot on. (Thank you).

As suggested, if you are still having problems, please call our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Also, please see the link to our advice leaflet 'Guide to essential care for wet age-related macular degeneration' at the following link;

macularsociety.org/sites/de...

Best wishes

Helpline

Macular Society

[Ayayay80 in reply to andy1955]

Thank you, Andy. If you read my reply to eyesright you will see what I am all about and there seems no point in repeating myself. What I would like to know is: I am a keen walker, doing anything between 5 and 10 miles on hilly and rough terrain. Will the injections interfere with my pastime? All being well, the injections will fall just after my scheduled walks so that I may have up to 10 days to recover before walking again. Is there a given time after the injections when I should not walk?

[andy1955 Macular Society in reply to Ayayay80]

Hi again Ayayay,

General exercise and walking will not be a problem. Just be careful for the first 4-5 days after your injection as if you are in 'the wilds' you don't want to get dust etc in your eyes which could cause infection. Unlikely in the UK I guess, but we have had some dry weather!

If you are going to leave a gap of 10 days after your injection, you should be absolutely fine.

Best wishes

Helpline

Macular Society

[kalahuchi in reply to Ayayay80]

I also love walking and, indeed, dancing (but I am 57 and not 79 so it is much less impressive) and have had 5 Lucentis injections now. I usually go dancing after the injections if there is a class on to distract me (I did ask the medics if this would be OK and I promised not to do the jive!) and I usually manage about half of my usual activity with a few rests in between. I have never had to miss my daily walk of around 5 or 6 miles apart from on the day of the injection. I am very careful not to overdo it for a couple of days and would certainly suggest you stay close to "civilisation" because the sheer relief after it is all over with can leave you feeling quite exhausted. The first injection was terrifying and I made myself really ill with worry for more than a week beforehand but do you know what, the staff were so kind and supportive and there was no pain at all. In fact they laughed in theatre because I was still waiting for the injection and it was already over! On this last one I did feel a blunt pressure, like pressing on a bruise, but no worse than that. Like you, I have to take care not to get dust in my eyes, especially when walking along the roadside, and always get given a transparent, plastic cover to tape over my affected eye which my glasses fit over. My eye always feels really sore and gritty the following day (or two), but by then the injection is over. I find putting some sterile gauze over my eye and a cotton wool pad between the gauze and the plastic eye shield keeps the eye gently closed and stops the irritation. On the day of the injection I would advise you to ask lots of questions and don't hide the fact you are frightened.

You really do sound like a superwoman to me and I hope I am still hiking and dancing when I am nearly 80! Good luck with your treatment.

[Ayayay80 in reply to kalahuchi]

Thanks for that, kalahuchi. I have gathered some good advice all round and I feel just a little bit less scared.

[Lynae]

Get another doctor. How horrible. I got my eyes injected the same day my doctor (a retinal specialist) found that I had wet macular degenerative disease in both eyes.

[squinty]

Hi there Ayayay80, hope you have been to A&E and sorted out injections. As for exercise, I am a keen walker, badminton player and step aerobic gal. After my last injection, I am not able to do much the next day but tomorro is my second day and I will be doing my strenuous step aerobic class in the morning. Good luck with it all and keep us posted. You probably just have got wed AMD, they wont give you injections unless your eye is at a certain level. But you must keep on until you get it. love from Squinty x