Update on Endophthalmitis and progress

[Annsandra13]

I’m now 2 weeks on from the onset of this rare and devastating infection following my anti -VEGF injection, as you all know it has been a traumatic time but I am pleased to say I am feeling much brighter in myself and from losing the sight in my eye, I am now starting to see, not clearly yet but I am told this could take months so must be patient and continue with steroid drops every 2 hours, antibiotic drops and dilatation drops twice a day as I still have a lot of inflammation.

I finish oral antibiotics tomorrow, that I am told the bacterial infection will have gone after the antibiotic injections to my eye and 14 days of the oral ones, hopefully the effects of the meds will get less.

I have been treated very well by 2 consultants and will continue under their care.

I am due for 2 injections for wet AMD on the 25th, so have some decisions to make, I do feel that the injections for the foreseeable need to be by the doctors not the nurses.

I am obviously nervous about future injections and this happening again, and from all have read widely it is caused by something that was not within the sterile protocol, please make sure anyone in your injection unit wears masks and don’t talk whilst injecting, make sure your eyes have been cleaned thoroughly. It seems the best way to avoid contamination is to accept Iodine, then ask them to wash out the eye after it if you struggle with it as I do.

But as we all know there is always someone worse off and we have to be brave, positive and faith, my heart goes out to dear Ayayay who has battled so much much with great courage and dignity and is an inspiration to us all.

Hoping all on the platform for Macular have the best outcomes going forward for each of us.

Love to all

Ann xx

[Tetrazzini]

What a dreadful experience. I am so sorry to read about your travails and do hope everythng goes right for you from now on.

Best wishes, Johm

[Annsandra13 in reply to Tetrazzini]

Thank you for your kind reply, it is just hitting my reliance of people at the moment and hope I can get my independence back. I am so fortunate to have such caring family . Hope I will be able to drive again in the coming months.

I hope all is going well for you

Kindest regards

Ann

[Hidden]

Glad you're feeling a bit better x

Yes, iodine is best and I feel it's worth sticking with to reduce infection risk even though its so rare. Sounds like they have you well in hand, and the treatment does work so fingers crossed you get continual improvement.

There's nothing easy in the choices we have to make is there? Good luck going forwards xx

[Annsandra13 in reply to Hidden]

Thanks eyesight, hope you are progressing well. It is such a difficult and complex disease . Hope you are having a good weekend.

Much love

Ann x

[Sianana]

A brave and resilient response. Thank you also for your hard-won experience. Good luck with the next stage of the treatment.

[Annsandra13]

Thanks Sianana, kind of you to post, hope you are doing well, have a lovely weekend

kindest regards

Ann x

[alalex101]

I’ve never had anyone wear a mask for my injections. Is that a recommended practice? I am in The United States. Where are you? I hope your vision improves as the inflammation calms down.

[Annsandra13]

Thank you for your response, I am in the UK, I have watched many specialist videos on injections and how they should be carried out, it seems the most likely way I contracted endophthalmitis is through something that wasn’t sterile or from my own breath or someone else’s, so many doctors say masks should be worn, I am going to make sure I wear one too to the future.

Every injector I have had always wears one but the nurse assisting that tops up the anaesthetic drops etc doesn’t, so I will be asking that anyone in the room wears one.

I hope you are progressing well. It would be interesting to hear the protocol of procedure in the states from your prospective.

Kindest regards

Ann

[springcross]

Hi Annsandra13. I'm very sorry to read about your awful experience. You have really had a bad time of it. I hope that it will be over for you very soon and wish you all the best. I agree with you about Ayayay who has been through the mill and been so brave. Take care, xx

[Annsandra13]

Thank you for your lovely message. I hope you are doing well.

Kindest regards

Ann

[Gutfeelings]

Hi Ann

I am so glad to read your update hun I was thinking of you and hoping so much that you would get some improvement after such a painful and frightening ordeal.

I'm very pleased you are feeling a bit better.

Take care xx

[Annsandra13 in reply to Gutfeelings]

Thank you for your caring message, it means a lot as not feeling myself this evening. I think the reality of being so dependent doesn’t sit well with me even though it is being so graciously. Hopefully will be out and about under my own steam. I’ll get there.

Love Ann xx

[Gutfeelings in reply to Annsandra13]

Hi Ann

Sending you a ((hug)) its not easy to need or indeed accept help even from our loved ones but you will get there. Its completely normal to have ups and downs when going through any type of health issue or the type of frightening experience you've had. Please be kind to yourself and remember that people want to help because they care and I'm sure you would do the same for them. Its hard I know as I feel the same at times but you will get there hun, just take it slowly day by day... things will improve you have made a lot of progress already.

Thinking of you

Rose xx

[Annsandra13]

Thanks Rose, I will keep upbeat and as positive, I think it’s just coming to terms with the loss of independence and change in the way I manage the future.

As I have said before there are so many people worse off than me so I must find a good way forward.

I am looking at how this has happened at my clinic and wonder how far I discuss this with the hospital, I would hate this to happen to anyone else.

By complete coincidence, I had written to PALS 3 days before this happened explaining that the clinic seemed to under due stress and the recent changes had caused a number of problems, including poor feedback, very painful injections over use of dilation drops by a nurse led clinic.

I hope you are progressing well and in good spirits, I really appreciate your advice and support.

Sending love, hugs and thanks

Ann xx