Strange times

[Catseyes235]

Looking at some of the posts I do think we have to be incredibly patient regarding appointments. Many of us think we have reason to be prioritised which means those taking calls are inundated by enquiries to which they and sometimes even the specialists, don’t have answers as there will be fewer numbers taking calls, fewer staff, and those remaining will have to work totally differently trying to maintain distance.

I’m having injections on Tuesday but I’m nervous and worried about how it will be, having to travel on the bus, having to wait in the waiting room, close proximity to the people giving the injections and also worried whether it may be cancelled last minute...

However my brother who died 18 months ago had been registered blind as the injections weren’t available back when he was diagnosed so am counting my lucky stars that I, and my other brother in Scotland are even getting treatment.

I understand that if people are self isolating then that is the option to stick to for the moment and I just hope we all come out the other side of all this sooner than later and get back to improving our eyesight. We must be resolute and patient.

Good luck to all.

[springcross]

Hi Catseye. I was very worried too before I had my injection last Thursday but I needn't have been. I went into the toilet to wash my hands when I got there and then went into the waiting room. I was sat in the waiting room on my own for twenty minutes when two patients came in (they were not for the same department as me) and sat quite a way apart. Several of the seats had "Do not sit on this seat" signs on them so that people would not be sat close together. I was asked to wash my hands again when I went in to the injection room which I did gladly. The nurse and doctor wore masks. Everything had obviously been well planned so that there was as little contact as possible, with nurses etc standing good distances in between each other and the patients. It all looked very clean and the nurses were wearing masks. The doors are automatic so I did not have to touch any handles and when using the lift buttons, I used tissues.

I don't know what problems you have with your eyes but some of us have problems which are very worrying. I personally (amongst others) have wet AMD and experience leakage after just a few weeks after injection. I already have permanent damage to my macula and I most certainly do not want any more. Early last year I was left for ten weeks and when I went for my injection, it was found that I had quite a bit of leakage and should not have been left for so long. It took some time of going regularly for it to stop and I was then put on six weekly injections when it happened again. I was then given four weekly injections and was due to go to five weekly but now this has happened and I have been told that it will be at least eight weeks. The only advantage I have is that I sometimes have visual clues when there is leakage so I may know when to ring. There are others like me too who have similar worries and not just with wet AMD. It's good that you can be resolute and patient and long may your condition allow you to continue to be so. Good luck.

[Catseyes235 in reply to springcross]

Thanks so much for that reassurance. Just what I needed. I did ask when I called as requested if I’d go straight for injection but the person wasn’t sure. I’ll happily wash my hands as much as they ask ...they can’t get any more dry and scaley ! I’ve not heard the term ‘leakage’ I’m afraid.

[springcross in reply to Catseyes235]

It's fluid behind the macula causing central vision problems.

[Catseyes235 in reply to springcross]

Isn’t that what wet Macula degeneration is.. ? A build up of fluid? Never heard it described as leakage

[Hidden in reply to Catseyes235]

The mac soc website has excellent information on a range of macular conditions, explains the similarities and differences, makes interesting reading .

In wetmd there's leaks from the (not normal) proliferation of weak vessels in the eye.

Other fluid build up eg oedema in other conditions such as branch retinal vein occlusion ( brvo) is where the natural drainage system of the eye is blocked.

As regards patience, many folk have to advocate for themselves under normal circumstances so now is really no different, their sight is still under threat as it was before Eg I can go from fine to a big grey blob within an hour. Docs will have put me in the " can wait" group due to my implant which is fine but if I see any deterioration I will definitely be ringing in, I dont want any more permanent damage. I note that those who have posted their cases it has been agreed by the docs they should be seen so it was a good thing they rang.

Triage ( deciding who gets seen when) is an ever changing list as new patients present their symptoms- without having current info the clinics cannot perform this. So yes, don't ring for trivial things as the teams will be busy but i would say equally don't put off ringing if you have a regular history of deterioration/experience decline - let the clinics decide where to put you on the list once they have your current status.

Glad you have your appt. Best wishes going forwards x

[Catseyes235 in reply to Hidden]

With 3 wet AMD people in family and chatting to people in waiting room you realise there is such a diversity of conditions. Just had a call from hospital today and wasn't sure what about and scared appointment may have been cancelled but no still going ahead ....but then getting there on one bus still scarey too! I’m on every 10 weeks and hoping to go to 12 weeks by which time the situation may hopefully have improved?!

I do hope you get your treatment as needed. Best wishes.

[MikeG1944 in reply to Catseyes235]

Catseyes235; you must moisturise your hands after washing; cracked and scaly hands are more vulnerable to letting in the virus. This was mentioned on the news a day or two ago.

[Catseyes235 in reply to MikeG1944]

Hi there. Don’t worry ... suddenly those ‘gardeners hand cream’ s that you get as presents but rarely use are coming into their own. I also picked up a pump pot of E45 when last in supermarket so being liberally applied. Didn’t hear this on the news but glad it was mentioned. They’re not often mentioning drying hands which is really important too. I was really annoyed at a program saying you need running water and running water for 20 seconds is so wasteful. Next thing we’ll have a water shortage!

Accidentally clicked on your posts and saw you’re on Arthritis site too with knee pain..me too. This kicked off just as I was going to ask about getting a new knee! Have to wait now and not using any painkillers other than gel rub as saving paracetamol.

Anyway thanks for your post and good luck in these uncertain times!

[MikeG1944 in reply to Catseyes235]

I would do some research into knee replacements Catseyes235 before you consider it, after all this is over of course. TKRs as they are called can work but often fail. The success rate is nowhere near the success rate of hip replacements, and many who have a TKR which goes wrong end up in a wheelchair. At the moment I have decided not to pursue this route as a can walk short distances with the aid of a Rollator. Glad to see you are using moisturiser; nothing worse than cracked hands.

[Catseyes235 in reply to MikeG1944]

My sister had both replaced with great success ..she never fails to remind me now in her 85th year and over 15 years since her first one. I’m thinking of the partial replacement that is having good successes and is less intrusive. Did you see the one performed live on television with the patient on an epidural? Weirdly fascinating. I’ve had knee problems since teens and rather annoys me they call it wear and tear ...or now wear and repair as surely I’d be fully repaired by now!

[MikeG1944 in reply to Catseyes235]

Yes I saw a TKR on the TV a while back, and a hip replacement as well. Perhaps partial is a better option?

[springcross in reply to Catseyes235]

It's much quicker and easier to type leakage as opposed to build-up of fluid.

[Emelinep]

Hi Catseyes I have my appt this afternoon. I am always nervous as have had a few challenging experiences but I am naturally more nervous today. We will be taking mega precautions especially after the injections (both eyes) & hope this is what I call a good one I.e minimum pain. I’ll post my experience as soon as I can see well enough to type. Best wishes for yours tomorrow x

[Catseyes235 in reply to Emelinep]

Good luck and when you see this you’ll be over with your injections for the time being. Hope it goes well.

It certainly adds another dimension to the usual worry about how things go. After 3 years of injections the last one was the worst for some reason with one eye sore, gritty and watery for 4 days whereas sometimes I come out fine and don’t need a single eye drop!

Hospital rang this morning and still going ahead so now just have to think of the bus journey, gloves, scarf gel etc.

All the best.

[Emelinep in reply to Catseyes235]

Thanks Catseye a good one this time. Bit of a delay as eye unit using just one room for injections and ops. It was a bit small for the doctor and nurse. They were incredibly kind and we were well spaced out in waiting area. Once home I stripped off and had a shower avoiding above chest height obviously. I then washed all the clothes at 60 degs on full wash I.e not a quick wash. Might be OTT but made me feel better x best wishes for tomorrow.

[tallyho]

I don’t agree about being patient if I was I would def lose more sight and I only have 1 useable eye. Mind you I don’t have AMD I have DMO which is far harder to treat and has more complications. If I were elderly I would probably feel different and would be more patient but not at my age when I have my life a head of me. I am a priority because I am relatively young with only one useable eye and still expected to do all the things people my age do. Sometimes we have to stand up for ourselves and being patient will not get us anywhere.

[Catseyes235]

What I am saying is not to give up trying to get appointments etc but not to expect instant answers or get annoyed with receptionists as staffing numbers are affected and reception need to contact others who are also affected. I had injections for AMD yesterday and was horrified how close some people got to the masked receptionist desk to make their point, ask if they should have treatment, or hand over letter - despite lines clearly showing where to stand and all that was needed was to give their name or hospital number.

Hope you are getting some answers and getting through to the correct people. Good luck

[Hrosie]

The Macular Society has issued good guidelines in it's recent e- Newsletter about how NHS eye clinics are adapting the way they see patients for injections during the current crisis.