Ayayay Reporting: Hello dear friends. After... - Macular Society

Macular Society

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Ayayay Reporting

36 Replies

Hello dear friends. After almost 6 months hospitalisation and 7 operations and lesser procedures I have finally come home again today. As I have already mentioned, I have lost My entire stomach and spleen and part of the pancreas. Then a massive stone had to be removed from my liver. Then It was decided I needed a Pace Maker because my pulse was too erratic. Then I had to be fed through a tube down my nose into my gut because I could not eat and was slowly starving to death. I went down to 32 kg - under 5 stone.

Luckily, my AMD stayed dry from April to September when fluid started to build up again. But because I was too ill the eylea injections had to be postponed- now for the 3rd time. I will have the ext set of 3 injections starting at the beginning of November. I can tell they are needed. I just hope that not too much damage has been caused.

Hope you are all doing well, dear friends and would love to hear from you. xxx

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36 Replies
rollerboy profile image
rollerboy

Wow! I thought I had problems! I am in awe of your resilience, Ayayay. If there is any justice you should have no further afflictions to contend with - courage!

in reply to rollerboy

Thanks rollerboy. you are too kind. Unfortunately things don't work that way although I agree I have had my fair share. Perhaps I have been too fit and healthy until turning 82 when everything crashed down on me. As far as courage, is concerned , despite all the horrendous pain I had to suffer on many occasions, you just grit your teeth and hope that you either black out or die. And you don't particularly care which. Anyway, all is well now - I hope. Bless you all for taken an interest n me. It has helped to lift the spirits. So , again thank you.

pinkperfection profile image
pinkperfection in reply to

It is so good to hear from you and your bravery puts me to shame. I really hope things improve for you from now on as you sure deserve it.

ironbrain profile image
ironbrain

All sounds very brave. Very glad to hear you've survived the ordeal.

Hello ayayay,

It is so good to hear from you, as I have been thinking about you so frequently. The people who run this site have made some changes, and not for the better, well in my opinion. But I am so pleased that you have managed to communicate again. What a rough (putting it mildly) time that you have been experiencing. You always inspire me, particularly when my mind runs riot with all of the what ifs, and they are numerous, as I am sure that you are familiar with too. It is so good to hear that you are back home again, as the last time that you posted you were finding it difficult to eat. I do hope that you can enjoy a little of certain foods now, as it is so miserable not to be able to eat. We take the workings of our bodies so much for granted, and when they decide to rebel, it is a fight for survival. I do hope that your next batch of eye injections go well, as I am sure all of us on this site do. Much love, Susan. xxx

in reply to

You are all so kind to me. It is heartwarming to know how many people care. I am trying to reply to each one of you but the going is still a bit slow. I still cannot eat very much but at least, I am keeping the food down and I even enjoy certain food stuffs. Just imagine, I am snacking on chocolate, marzipan, nuts, fruits , crisps, lots of milk all between meals, And still, my body is totally emaciated. It will take some time to get my weight back. The trouble is, I thoroughly hate any Supplementary Preparations. Just the thought of them makes me nearly puke.

It is high time for my eye injections as my eyesight is really bad at present. On top of that I need new specs. Hope that all you, my friends, are are doing well. xxxx

MikeG1944 profile image
MikeG1944

Nice to hear from you again Ayayay; glad you're on the mend; you certainly have been through the mill; let's hope for better times ahead. Sorry to hear you have to have more eye injections but I'm sure they'll get that settled again soon. As others have said your problems make ours seem so minuscule; you certainly are brave. here's to your fast recovery. Mike.

in reply to MikeG1944

Hello Mike. Thank you so much. I wouldn't call myself brave, I am merely a realist and accept what needs to be done. Deep down, I am as scared as anyone. Nor do I feel easy about my next injections , but I'll not let it trouble me. Just a bit more pain! All the best, Mike. x

Welcome home !!!

Wow you are made of good stuff girl x such resilience and fortitude.

Hope you are feeling relaxed and getting back into the swing of things at home - gently!

Fingers crossed for your inj.

So good to hear from you. Xxx

in reply to

Thank you, eyesright. Well, you either do or die. I don't think we have all that much say n which way it goes. I had my moments when I quite happily would have said good bye to this word. Now, that I am beginning to pick up am glad I am still here even if I have to have more eye injections. Life is still good!

How are you faring with your eye problems? I hope everything is going well. xxxx

in reply to

Recent review all good thanks, next one in 3 months. Xxx

fed13 profile image
fed13

You have had a terrible time: congrats on coming through it! All the best with the injections.

Keep posting: I hope you continue to recover and wish you the very best!xx

cormorin profile image
cormorin

Thought my problems were bad but dim to nearly nothing compared to yours! Hope your injections work well. Take care & let us know how everything goes. You are an inspiration. Love & Hugs to you!

in reply to cormorin

Thanks cormorin. We always expect that someone elses worse problems are to make our own feel lesser. But we know that is not true. Trauma is trauma and problems are problems not to be measured against each other. They are real and painful for the afflicted. All we can do is our best to get through. I have greatly appreciated all the good wishes, so thank you again. xxx

IvyRose2 profile image
IvyRose2

Oh poor you, hoping you will feel better soon, and start getting your weight back up and your injections go well, lovely to hear from you, wishing a speedy recovery, take care.

in reply to IvyRose2

How sweet of you, Ivy Rose. I am sure I will put some weight on soon. But just think how lucky I am that I can eat as much chocolate and cream buns as I like and I don't even care all that much for them. Hope all is well with you too. xxx

Jayral profile image
Jayral

So lovely to hear from you...been thinking about you so much, in fact stalked you last week on Healthunlocked (!) and found your posts on another health thread but the last one showed 3 months ago and I was worried! You are one very spirited, courageous lady and you continue to be an inspiration. We have missed you on here, that’s for sure and thank you for the update...good luck with the next set of injections...if anyone deserves that luck it’s you. Jenni x

in reply to Jayral

Oh Jayral, don't make my head swell too much. All I did was do as I was told and go with the flow. The surgeons, doctors and nurses got me through the ordeal, And and an ORDEAL it was!!! I am glad to be back now. Thank you for all your caring words. xxxx

alalex101 profile image
alalex101

Praying for you today. You are strong to go through so much!

in reply to alalex101

Bless you too, alalex. Thank you. xx

Getwell89 profile image
Getwell89

You are such an inspiration! I was worried about you for the longest time and was very happy and excited to see your posting! You have been through so much and I hope you will slowly regain a lot back now that you are home.

Hope your injections go well! You are an excellent example of bravery through tough odds! So honored am I to communicate with you!!!

in reply to Getwell89

Have been pottering around the house today, discarding some clothes which are 3 or 4 seizes too big now. I'll just be glad to gain a couple of seizes. I Doubt that I can manage more. xxx

Bobbie915 profile image
Bobbie915

How wonderful to hear from you. I’m sure your many friends on this forum have been thinking of you. What a journey you have had. I can only hope that you will make a good recovery and be able to enjoy life again. Big hugs. Bobbie xxxxx

pinkperfection profile image
pinkperfection

How wonderful to hear from you and as others have said your bravery and resilience is remarkable. I have wondered how you have been getting on and it makes me feel that my issues are insignificant. I hope you will be able to have some fun now and hope your eyes have not deteriorated too much. A true inspiration to us all. Take care and wish you luck from now on.

springcross profile image
springcross

Hi ayayay. My goodness, you really have been through the mill haven't you. I hope you go from strength to strength slowly but very surely and also hope that all goes well with your injections. Thinking of you. xx

Ayralin profile image
Ayralin

Bless you. Such an ordeal. You are very courageous! Praying for positive direction for you now. So glad that you are home. One own bed and surroundings are soooo much better!

Linda

in reply to Ayralin

Bless you Linda. x xxx

Ceri2 profile image
Ceri2

Welcome home! It’s lovely to hear that you are back home. Wishing you well with your recovery. The eye injections will be a doddle after everything else. Take care x x

in reply to Ceri2

I dont think the eye injection is a doddle. Pain is pain and most of them have been painful. All the best xxx

Ceri2 profile image
Ceri2 in reply to

I would send you a pain free one if I could! Good luck! X x

Eyeproblems profile image
Eyeproblems

You are such a brave lady going through all that you have and then popping up here with your news, so lovely to hear from you again.

Hopefully the loading set of 3 injections will help again which will make a difference to your vision. We are all rooting for you .

in reply to Eyeproblems

Strong maybe despite my frail appearance - not brave. Thanks, anyway. xxx

Annsandra13 profile image
Annsandra13

Dear Ayayay, you just keep positive as you have been, such a wonderful inspiration to us all, our hearts and thought are with you, wish I had the power to heal you, but I will send healing through the universe.

Sending love and admiration.

I have been thinking of you !

Much love Ann

Xx

in reply to Annsandra13

Thank you. So kind of you. I am doing alright now. Been home for a week.and progressing. Not yet 100% but I am happy. This coming Monday I have to go for my eye injection. Hope my eyes are going to improve, as at present they are quite bad. Was forced to forego my injections as I was too ill.

Hope all is well with you. xxx

Annsandra13 profile image
Annsandra13

Good luck for Monday, keep positive dear friend, sending you lots of love and hugs, thinking of you a lot.

Ann xx

2468G profile image
2468G

How lovely to hear your wonderful positive message even though you have been through such a horrendous ordeal. I haven't checked In on healthunlocked for a long time but glad I did as it's great to know you are doing so well and even managing a bit of chocolate!

Keep fighting on ayayay. You are a force to be reckoned with.

My very best wishes to you, as ever.

Gxx

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