Feeling a bit down

Well, yesterdays review not so good. Id felt things were perhaps not going as well as the previous review but didnt want to say until the scan was done.

The oedema is worse, there is now some nerve damage, and the IOP is 23.

Consultant says she can see the inj work though so is willing to continue and im booked in for another 3. To deal with the raised IOP i now have betablocker drops twice a day. I know the raised IOP can be because of the inj so Im desperately hoping the drops work to enable the inj to continue (never thought id be saying that lol).

Dr says stress is definitely an issue as it raises bp and I have other health issues which may be related (no arterial pulse in left foot, for which Im having a scan on the 20th).

Had a good cry yesterday, feel fed up but it has spurred me to ring my occ. Health to see if they will support me reducing my hours at work. Also looking at taking previous pension early - and thinking of buying a shny new car while I can still see to drive lol ! Off now for a nice relaxing bath and a good book, fingers crossed the inj appt comes through quickly , shame there was no clinic on yesterday.

Hey ho, one foot in front of the other, keep going..............

18 Replies

oldestnewest
  • Hello Eyesright, so sorry to hear the news in your latest post. For sure we all know what it is like to ride the Rollercoaster of eye conditions. Thank goodness we do get those important ups, not forgetting the support from this Forum.

    Your review is ringing some similar bells with Mr Smiler. We had moved to a three monthly review, which is never good news for him. My monkey knew his sight was deteriorating again but resisted a return to clinic early! Having had a lengthy consultation with his most trusted Consultant and yes that does make such a huge difference, they are reviewing medication again and the first injection is scheduled for Tuesday. Our appointment was also on a none injection day and yes it is definitely true you wish that was not the case.

    You are taking a positive step to review your work life balance. Good luck with that as it will be great to have time to do those things you value.

    Sending you a huge hug and we will be thinking about you on your journey.

    Kind Regards

    Mr and Mrs Smiler

  • Thanks guys, same to you x

  • Good morning Eyesright, so sorry to hear your news. I'm hoping with all my heart that the injections work for you. It must have been quite a blow to get that news. I was diagnosed with amd a year ago, and I don't know much about it. I wish you all the very best. Just keep being positive. It's good that you can talk to people on this forum, it helps a bit to release the pressure. Best wishes. Take care 😊

  • Thankyou, I appreciate your good wishes x

  • A big hug coming through ... so sorry to read about your recent review and hope things pick up after your next injection and continue to keep you on an even keel. I've read the Smilers reply as well and it really concerns me that people they know, or are pretty sure, will need another injection are not being booked in for one on the same day as the review and so avoid this unnecessary waiting time.

    While it doesn't work every time (and we've had some dreadful experiences) I have managed to get an agreement to this effect for my 93 year-old mum as the journey and hanging around waiting really stresses her out. Just wondering if it would make any difference to the procedures of the various hospitals if everyone who came in made such a request? They might get fed up with hearing about it and decide to change?

    I'd noticed mum's vision test was not so good at her review last week so not surprised to hear that fluid had returned. Saw the same consultant as a few months ago who wanted to extent the period between injections, against my gut feeling, and this he admitted was proved to be a wrong call.

    Now he's suggested changing to Eyelea from Lucentis as it might be more effective. "We tried that and it didn't work so well," said I, reminding him to review her notes. Fobbed off with 'let's give it a go and see if it is better next time', so I guess we shall see. My betting is that she will be back on Lucentis and I wonder if I should have resisted the change?

    Somehow get the feeling that because she is 93 and has had 32 injections that they are wanting to stop treatment on the basis that it's not keeping the fluid away and therefore not working. However, from my perspective I'm grateful that she has kept her sight in that eye for approaching four years now and, even though it's a horrible procedure, I hope we can continue.

    Fingers crossed for you Eyesright and Mr Smiler.

  • Thanks rooky, best wishes to your mum too x

    It seems the eye depts are under immense pressure. I read on the mac soc website about the royal college of opthamologists report which says they think hospitals are prioritising new pts ahead of reviewed ones despite they say the reviewed ones being much more likely to suffer damge as a result of delays. They are apparently issuing new guidance to hospitals.

    There is no easy answer is there? As a new pt I was grateful to be seen quickly and wouldnt want that to change as the emotional distress on waiting to get a first diagnosis etc is awful.

    I do think though that the nhs tries to do too much and there are some things it could stop doing and divert money and resources to other areas. They also need to be smarter in how they organise things - my hosp wanted to get 15 inj a day done but the computer could only schedule 10 appts so they double booked us ! Didnt tell anyone, didnt write on the appt letter the actual time we would be seen.......by the afternoon there was a 2 hr delay. I felt sorry for the staff who had to constantly apologise and for an elderly lady waiting nervously for her 1st inj, there were people having to rearrange lifts etc. I wrote to PALS to highlight what had happened and will ask the staff at my next inj if anything wa said (my review appt was actually cancelled but Im sure that was just a coincidence lol).

    I actually work at my hospital in a different dept but have not been impressed with the quality of many of the managers !

  • Sorry to hear your news. Try not to feel too down though a good cry helps sometimes. Amd has to be one of the nastiest tbings to deal with but you do usually have a pretty positive attitude trying to deal with this so keep it up. All on here are thinking of you as we all try to think of each other. It keeps us going knowing that we are not alone.

    Big hugs to you & as my Nan used to say 'keep your chin up' .

  • My nan said the same thing x I have brvo with macular vein occlusion and oedema (and now nerve damage!) but the effects are pretty similar to wetamd so we are all in this leaky boat together and yes, it does help not to feel alone, thanks x

  • So sorry to hear your news. Yes stress does raise BP. I'm on medication for this, and am going to have bloods etc. Done next week to see if there is any other health issues to correct.

    It's great that you are still reading and driving - great for the morale

  • Thanks x to cheer myself up I have just bought myself a new (ish) car today !!! Going to enjoy the ease of an automatic (got leg/back probs which have made the manual a nightmare in rush hour stop start traffic).

    Hope your tests come back ok x

  • Hi there I see on your post that you are taking drops for OHT. Did the ophthalmologist tell you how important it is to do puntual occlusion when using beta blockers? Just looking out for you hope u don't mind the ask x

  • Sorry * PUNCTAL OCCLUSION. I know about this because I am on drops for OHT/Gluacoma

  • Nothing was said to me. What is it ? Thanks for highlighting to me x

  • Hi there I will explain. When you take eye drops for Gluacoma it is really important that the drops are absorbed where they need to go to reduce eye pressure. However as you know we all have tiny tear duct holes and sometimes when we put drops in some of the drop can enter these holes which is not what we want since the drop can then be absorbed into other parts of the body and give systemic side effects.

    To prevent this happening when you install a drop close your eye tightly and place your forefinger in the corner of your eye thus covering the hole - it is called punctual occlusion. Ideally you should do this for 2 mins. This will help the eye absorb as much of the drop as possible and work as efficiently as it can. Hope that helps. Can I ask what drops you are on? I think you are being well looked after to be placed on drops with an IOP of 23 mine was higher than this for a while before I went on drops. Now I have had an iridotomy and face more surgery. Take care sorry for the long post.

  • Ah thank you. The Dr and pharmacist said nothing but I did read about it in the data sheet just hadn't realised the proper term lol. If I hadn't read data sheet wouldn't have known tho so thanks very much x

    I'm on Timolol Maleate 0.25%. One drop Twice a day.

    I think put on it now as already got nerve damage as well as the Macular damage.

    Good luck yourself x

  • It is a bit of a drag to do but I was on Timilol but now on 2 other kinds of drops. I have had the side effects so know how important it is to do it. Take care great to hear you have a newish car wish I was still driving 😕 my eldest daughter has my car now as she recently passed her test so she and my husband are my drivers 😀

  • Yes, v glad can still drive. I wasn't going to change my old car because of the vision uncertainty etc but it's given my spirits a bit of a lift today as its so much nicer, and should help with the leg pain as its an automatic.

    The drops aren't too bad, I already put hylotears in plus take what seems like half a chemists load of pills everyday (incl a beta blocker ) lol.

    Can't grumble, getting old is a privilege denied to many. X

  • A bit of retail therapy always helps! Generally new shoes or perfume works for me but think I'll hold out for a car! You've raised the bar ;) ;)... Fingers crossed for you and your next course of injections xx

You may also like...