• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Can't keep all the plates spinning..

I

itsmeme

Member
Messages
10
Type of diabetes
Type 1
I have been a type 1 for nearly 44 years, I have also an inherited kidney stone disease which means I have had numerous operations, "blasting" treatments, countless UTIs, and have "passed" 100s of stones - which has led onto CKD stage 3. Because of the stones I have had sepsis twice, on one occasion resulting in a 10 day stay in ITU on life support. All of this I have taken in my stride, people tell me that I am stoical and I have a brilliant sense - if only they knew..
My latest problem is that despite attending regular Eye checks both at Outpatients and Diabetic eye screening and being reassured by letter and verbally that my eyes are in a very healthy state for someone with long term diabetes, I have now been told that I have a long list of problems with both eyes, and two consultants commented that they have not seen anything like it, and all they kept saying it was weird. When I took the letter to the GP for some translation into friendly language, she said it was too specialist for her. I have googled some of it which left me despairing. I see a urologist and renal specialist and see my GP for diabetic care. However, since this latest list of problems have asked to be re-referred back to clinic. My control has been hit and miss due to kidney problems, last bout of sepsis was four years ago when kidneys were blocked by stones - getting control sorted almost. Finding it difficult to keep smiling at the present moment
 
Hello @itsmeme - welcome to the forum.

Sounds like you have had a lot to deal with recently with your eye results, it's perfectly understandable to feel down. I am sorry I cannot offer any advice about your eye issues, except take each day as it comes, see if you can get your GP to investigate the letter and give you more feedback or at least direct you to someone who can advise further. Have you been given any feedback about treatment required ? Sending you a hug.
 
@Juicyj Thank you for your reply. The doctors want to see me in one month to review the left eye and he promised to have plan by then. I have blood in the back of the left eye, but there is so much they can't see where it is from. I also have asteriod hyalosis which is also obscuring the retina. They are not sure if I have a retinal tear, but fairly sure it is diabetic related. I also have macular oedeama in in right eye. What upsets me the most all of this is new to me despite my last visit being last November when I had a diabetic screening, nothing was said then.
 
Yes I can understand how your feeling, it therefore is quite a shock to be told something that was contrary to your last screening which wasn't that long ago. Try and put your fears to one side, until your next appointment you can only speculate or worry and neither is good for your well being, however do raise the question at your next appointment if you haven't already to try and find out why the sudden changes, I cannot say anything that will put your mind at rest except please try not to worry.
 
Hi. I know how you are feeling about your eyesight. I,also.have Macula Odeama in my right eye. I have been T1 for 52 years
I now get an injection called Ozurdex every 6 months which dries up the Oedema. Did you get a scan of your eyes? That shows up immediately what is wrong.
Wishing you all the best. Have you tried phoning Moorfields as they have a support line.
 
@Gemma2 Thanks for the reply and for the information regarding Moorfields - I will contact the Support Line after Easter. The consultants did not appear to be that concerned about the Oedema - in fact they did not mention it at all during the consultation, but I only found out about it in the GP copy letter. They were more concerned about my left eye. I feel that I have either developed these conditions very quickly (I had a cataract removed from the Right eye in December 2015h follow up with Optician four weeks after and a hospital follow up five weeks after op and nothing was said then) or I have not been informed of them or they have been missed during previous consultations. I did have a ultra sound scan but only of the left eye.
I am finding all this very difficult to cope with, normally I can laugh my way though everything life seems to be throw at me but this is one to many things to cope with. I have a husband with severe OCD/bipolar who needs lots of support, a teenager who is currently putting Kevin and Perry to Shame with her antics and elderly parents who needs constant propping up.
Sorry for the feel sorry for myself post, but this currently is one too many things to cope with.
 
Back
Top