Hi everyone,
I am a 43 years old female. Had an eye check with the optometrist and got referred to the eye hospital for wet AMD.
I am really scared and depressed after reading about this condition. I am an orthodontic therapist and hygienist, the main provider for my family.
I fear that soon I can do my job if condition get worst.
I am so worried , I feel sick....can not stop crying..
I wonder how everyone else cope with c their jobs, do I have to switch careers?
Hi spoony, sending you a hug X diagnosis is always a difficult time. I suggest you contact the macular society via their website/ helpline, they will give you lots of expert support.
Wetmd is treatable so there is hope and many continue working and driving.
IMPORTANT You must ensure that you are seen at the hospital within 2 weeks of referral. It should have been faxed. Do not allow delay - if necessary chase up. The Mac soc can advise you on this.
Sight issues are known to be akin to bereavement emotionally so be kind to yourself. I cried myself to sleep every night the two weeks. Nearly six years on I'm still working in hospital lab, driving and reading OK. ( got different condition but similar effects ). The treatment sounds scary but isn't as bad as you imagine, and we've got lots of tips here to help! You might need long term treatment but it works for most folk so there's every reason for hope.
This forum is great as even our families and close friends can't really understand what we go through but all here are with you! Come back with any questions, and tell us how you get on.
Wishing you all the best going forwards x
What splendid advice. Best widhes and good luck.
Yes if it is wetAMD, it can be terrifying, but don't dilly-dally, start treatment ASAP! Treatment (injections) will halt the progression of your "wet eye" from getting worse.
In the meantime, IT'S UP TO YOU to save your "good" eye with the mac society life-style recommendations listed below.
After three years, I have saved my good eye & vision in my wet eye is slightly distorted & blurred, but I HAVE NOT lost my central vision in that eye.
Amazingly, a good eye will over compensate for a bad eye. For example, if my good eye is a "10" and my bad eye is an "8" you'd think together they'd be a "9" but they're not! Together they're a "9.5"!
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Hi Spoony, so sorry to hear of your distress. I hope your diagnosis turns out better than you are expecting. You have certainly come to the right forum for support and helpful tips. I must say I am surprised that someone your age would have age related MD. There are so many different eye conditions that a few years ago, I was completely unaware of. You should be seen very soon at the hospital. Please let us know what they diagnose. Fingers crossed - good luck.
Hi Spoony - Over two years ago I was diagnosed with wet macular degeneration in left eye and last year in my right eye. At the time of diagnosis I felt devastated. I was 75 years old but very active and into all kinds of needlework. I see you are only 43 and also devastated by your diagnosis.
First of all make sure you get an urgent referral to start your treatment. If you delay you can lose more sight. My optician told me that from diagnosis to first injection should be 12 weeks (less if possible).
Secondly the Macular Society is absolutely marvellous. I telephoned them and was so upset I could hardly speak for crying. The lady was great, talked to me and reassured me so much. They have all the information you will need. You can phone them any time for a chat or to get information or whatever. They will also help you to make sure you get an appointment in time if you are having difficulty. So many of us suffer this that the clinic appointments are like gold dust.
Thirdly do not worry about the eye injections. My friends recoil from the thought of these but in actual fact they are nothing to worry about - some discomfort and a bit of irritation afterwards but I have been having to have both eyes injected each time I go and I am OK with this.
When I was diagnosed I felt panicked and tried to face the whole thing at once. As the time goes on you will realise that there is a lot you can do for yourself and that the deterioration in vision can be very slow. I am now 77 and have not had much deterioration in the two years from first diagnosed - I can still do my needlework, I can drive and do all the things I did before.
Lastly the Macular Society has little groups of mac. deg. sufferers meeting all over the country and I attend one of these. It is actually quite good to meet with others who know what you are going through. We have a cup of tea and a chat and swop tips. We also have interesting speakers who talk about all sorts of topics.
I can see you are trying to face everything at once and I feel if you talk with the Macular Society ladies they will be able to reassure you and help you. I hope this helps. I feel for you and send a big hug as I can remember so well how I felt.
Hi, it is understandable that you will be feeling anxious and upset at this but remember you have NOT BEEN DIAGNOSED, you have been sent with a suspicion. There are many 'normal' abnormalities for example, if you are very short sighted, have some pigments and certain drusenoid like deposits. If the optician did see fluid it could be CSR (which usually will resolve on its own) I presume you had no symptoms prior to your routine examination, so try and keep positive, and fingers crossed all will be grand.
Hi Spoony so sorry you’re feeling anxious and depresssed. I was the same three years ago when diagnosed. However although I’m nearly 30 years older than you, I am very active and am still doing everything I did before except drive at night which many of my friends who don’t have the condition aren’t doing either. I can’t emphasise enough how wonderful they are at the Macular Society and they have an excellent counselling service. You might also want to get in touch with your local low vision clinic. If your eye clinic has an Eye Clinic Liaison Officer, they are well worth contacting too. Best wishes going forward and I hope you get your eye clinic appointment soon
Hi Spoony19. Sorry to hear that you have wet AMD but you have come to the right place here. These are great people who will give you the benefits of their experiences and share their worries with you. Do you have it in one eye or both? If one eye, your other eye will compensate. Do you know how long you have had it and if it's a while, is it showing any damage to the macula? I have it in my left eye but it had been there a while and the macula had already been damaged as a result of my not obtaining treatment (I thought my glasses needed upgrading to be honest so it came as a shock when I found out that was not the reason my eyesight was bad). I have Eylea injections which really do help so please don't worry too much. I know it's a shock at first, but wait and see what happens when you get treatment - it may not be as bad as you think. Keep us informed and good luck. xx
Hi again Spoony19. Sorry, when I read your post I thought you had already been to the Eye Hospital but then I read the other replies. I know it's easy to say but try not to worry too much - it may not be too bad and at least it's treatable. xx
Everyone is giving such great advice, please read them all. I will direct my comments to how it has affected me in my occupation and daily life.
I have one eye affected by AMD. Central vision IS distorted in my left eye. I am a Registered Nurse , but was retired from clinical work when diagnosed. I still work as a nurse. But in an educational, counseling position now.
Most things that are affected. I am able to do with help. Hand hemming dark clothing- I do it with a bright task light and a stand held magnifier. Reading, mostly on a Kindle or smartphone screen where I can enlarge print. Or I use a magnifier for small print. I have found a great smartphone app that will snap a pic and read it to me! It's called Speak! An android app. I have used it for the tiny print on medicine directions.
I have trouble with road signs when traveling by car. I cannot use them to know if I have reached a certain roadway, so I use my smartphone GPS to know when to turn.
At first I panicked, so I did invest in a Kindle that will do text to speech. But as yet, I do not need that.
Fingernail and toenail care...I am starting to have trouble. But this may be a good excuse to get mani and pedicures!
If I still were in clinical practice. I know I would no longer be able to start IVs, or do fine detailed dressing changes like wound vacuum placements. Or subq TB testing where it's needed to create a weal beneath a thin layer of skin. I would also require magnifying tools to real fine print. But I also know that most things, I would still be able to do, maybe with some accomodation.
Here in the USA, I believe employers are required to make reasonable accommodation for employee disability. So if it came to you having trouble, you may want to find out what is required in your area.
As someone else said, don't panic yet! Wait for your diagnosis. Ask questions. Research. And come here for great support and lots of answers and ideas!
Best wishes,
Linda
I forgot to say....at 68, I still love to kayak - but I have had to make changes! I can't see rocks clearly to do whitewater anymore!! But I do still kayak on flat water, and rivers without rapids! You can still enjoy life!
Linda
What wonderful advice! Everyone is so good on this Forum. I do wish you the very best Spoony19. Sending you a big hug; do tell us how you get on xx
Oh my dear God, I am so happy to see so many people replied to me. Thank you to everyone for your encouraging words...they are making me feel better.
Today I went to A &E Moorfields Hospital as all day I struggled at work with my blurred vision. They did not want to see me as on the referral it is not stated urgent. But they gave me the first available appointment for 24th December.
I feel it is still a long time, and I wonder if my vision will get worst.
I have to stay positive and wait patiently till I will be seen ...
Thanks to all of you and God bless you for your lovely words.
I will let you know how things go...
Lots of hugs ..
Spoony, have I read this right? You're referred for wetmd but it says not urgent?? That's wrong. You should be seen within 2 weeks. Moorfields should know this.
Suggest you call the macular society who can explain the protocol and advise you whether to wait until the 24th or push ( all clinics have emergency appts).
Don't panic, but do be your own best advocate.
Hi Spoony, I have wet AMD in my left eye. Since the initial diagnosis, I've had numerous injections until my consultant eventually settled for Eyelea. These meds reduce the leakage of fluid into the macula by retarding the growth of the weak blood vessels that are prone to leakage. They're only a temporary fix in my experience. Another drug used for the same purpose is dexamethasone (a steroid) which is a tiny implant into the eye which dissolves over a period of three months. I had a better response to this since the reduction of fluid was much greater than with Eyelea. However, the fluid inevitably comes back again. There is a new drug on the market currently going through trials which is supposed to seal the leaking blood vessels much better and for much longer. It's AXT 107.
As someone who also takes four different types of blood pressure medication, I am also beginning to wonder if any of these may be an aggravating factor in the leaky blood vessels. But this is only a hunch on my part.
As for eye injections, they sound worse than they really are. The eye is anaesthetized and the injection is just a quick jag. You won't see the needle as you are looking away from it and the site chosen is at the very bottom of the eye. You'll see the fluid as it is injected and floaters for a few days but it eventually clears.
Hope all goes well for you.
Ray
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