Diabetric retinopathy, PLEASE help

[qaz]

Hey all, I REALLY need some help or advise because I'm so very lost and don't know what to do.Basically I have quite alot of issues and I don't expect to get past them but for yhe past 7 months I have been in a battle with Diabeyic retinopathy and it's noe very serious and i cant say how scared I am. & months ago my eyes were ok but it was then noticed that I had some new vesseld growing on my retina and they wanted to start laser treartment right away.

Just to quickly fill you in if you don't know about D.R. basicsally diabetes over time destroyes blood vesseld and the tiny ones in the back of your eyes often suffer first. As the vessels leak the eye grows new vesseld but these are to fragile to survive and always bleed. The blood can seriously reduce vision but is dealt with by a laser burnung the back of your eye and stopping the eye from requesting this new blood supply.

Anywya, usually after 3,000 or 4,000 burns this complication stablises and the one day in the disatnt futyre IF needed there is an operation that can be done to drain the eye of its gel ( and the blood ) but that's right at the end of the problem. So here I am sat here typing with my left eye under a patch, glasses and sun glasses and trying hard to see through my right eye, my left eye is full of blood and tghe sight is just a deep red haze that I cannot see through, I have lost the ce4ntre vision in my right eye but can still see somethings. For unknown reasoins the lasers are not working and after over 11,000 burns to the left eye and 10,000 to the right there is no sign of it stableising and they are aboout to operate on the left eye. This should not be happening and the drs don't understand why the lasers haven't helped. I a m in so much pain ALL rthe time and my eues feel like they are dying I KNOW i don't have long left before my sight is completely gone and I don't know what to do or if I can even do this anymore. Has anyone else been in this situation or does anyone know what I can do to help myself...my consultant hasn't told me a thing and is NOT approachable! I'm SO SO scared and if anyone hads anything they can tell me to help or advuse then PLEASE let me know because I feel like my life is over and living alone I cannot manage my diabetes when blind, what do i do?????

 

[pat grimshaw]

Go see a specialist.

I know someone who had his retinas replaced from a donor.

 

[qaz]

Are you joking? As d=far as I have been told thzt is impossible, only the front of the eyes can be replaced and the retinas are infact ppart of the brain. OMG if what you say is true then why haven't I been told? I am so scared and basically sitting here in darkness waiting for my sight to go completely. I am paying for a specialist to see me next week at one hell of a cost but have just found out he is my consultantant at the hospital anyway! I have SO many questions I feel like I'm loosing mt=y mind and I don't think I can continue with this. I have been trying for a few weeks to find something online to buy that IF I need to will fininsh me off but een that seems impossible unless tou live in the US. I'm so lost and scared I JUST DONT KNOW WHAT TO DO.. I have gotten rid of the leeches sometimes called my family, and my 'partner' is stillkin prison AGAIN after being in the 10 most wanted, he's managed to bankrupt me, beay me, lie ALL THE TIME, rite of my car, and steal all my family's jewellery and expensive shit all sinece I met him 6 years ago.....but HE is the only hope I have fpr help. Oh god I need help and I need it now...please

 

[pat grimshaw]

perhaps it's a cornea

…why haven't I been told? …

are you speaking to a professional?
http://www.eyecaretrust.org.uk/

 

[qaz]

I turned 34 yesterday but I feel about 94. I know UI'm at thje end of my life, I cannot live like this and suffer all whats coming...it's too much.

 

[pat grimshaw]

http://www.counselling-directory.org.uk/region_55.html
http://www.sath.nhs.uk/

 

[mikey3000]

I turned 34 yesterday but I feel about 94. I know UI'm at thje end of my life, I cannot live like this and suffer all whats coming...it's too much.

Is your blood sugar levels under control? What insulin do you use and how much? Are you on humulin or any other synthetic insulins? have you tried natural based porcine and bovine insulins? Will your endocrinologist let you? Taking synthetic insulins are not appropriate for all diabetics. Look into it.

Contact these people:

http://www.iddt.org/

The Insulin Dependant Diabetic's Trust is a wonderful organization. They will help you somehow.

Best of luck.

 

[Soilwork]

I'm losing the sight in one of my eyes thanks to a condition similar to yours. Yes, going blind sucks when all I wanted to do with my life was make movies and take pictures. Life isn't fair. And you and I will both adjust to the new normal.

There are people who are blind, deaf, unable to speak or live on their own... And still manage full lives.

Sometimes you just need to adapt to the cards you have.

 

[quasar]

Head over to www.diabetes.co.uk I write an ocassional blog for them, and they have an excellent forum and community like we have here. Although we have medical professionals here at JUB, I'm not aware that we have an endocrinoloist amongst them, however over at the diabetes forum it is a little more specialised, and I'm sure you'll get some great feedback.

In the meantime, I've moved this thread over to the Health & Wellbeing forum.

 

[medic1]

Firstly i am so sorry to hear about your medical condition .
I noticed that you had posted that you were paying for specialist advice.

You should not be seeing the same Consultant that has been provided
by the NHS , if i were you i would seek out a 2nd opinion from another
independent Consultant .

You also have the right under the Patient`s Charter to request a change
of your NHS Consultant , this is a right , not a privilege .
I just wish that i were more knowledgable to feel confident to offer in-depth
advice , but as you know this is not just a matter of one Specialist area but
rather two Specialist areas .

Quasar`s advice is the best for you , what i can say is that you do not need
new Cornea`s , your ailment is as you say at the very back of the eye not the
front .

This will be a terrifying time for you , perhaps you can request a meeting with
the Specialists who are treating you , because it seems like a lack of communication and or understanding just may be part of the problem , most
people have a fear of the un-known , just maybe a more open and frank
discussion may put some of your fear`s to rest ?

Wishing you the best .

 

[pigface]

No such thing as a retinal transplant, and not likely for a very long time either, if ever.

I had a vitrectomy years ago (jelly removal ) for a different reason- and it isn't a really big deal. Psychologically it sounds horrible, but isn't so bad. Uncomfortable for a few days, it can't be denied, like a localised headache. And you have to sleep on the same side for 10 days or so after. But not unbearable.

 

[hotatlboi]

First, if you are considering suicide, you should speak to a mental health professional at once.

 

[cocksucker4use]

If you are 34, I am assuming you have Type I diabetes and have since perhaps early childhood. As mentioned above, getting control of your glucose levels through a stabilized insulin regime that works for you and controlling your diet and exercise are very important to you. It is not at all uncommon for children and young people with diabetes to be unable to keep to their proscribed program with its restrictions as to diet, time, activity, etc. Even in adults with diabetes, one can get on quite well for a long period of time, but the cumulative effects of high blood sugar eventually do catch up, and then patients are willing to listen and are willing to be compliant, and sometimes not. The thing to focus on is where to go from here. As mentioned you need a caring, qualified, communicative and empathetic opthalmologist pronto. Secondly, you should see a professional counselor. It sounds as though the turmoil generated by your relationships over the past few years may have made it hard to take care of you and your own health and well being. The one most reliable resource you have is you. A counselor/therapist could help you to deal with where you are now in terms of your health, and support you in making the best choices for you moving forward.

 

[FirstPlace]

I know you have heard this over and over again and a few people above me have already said it...CONTROL YOUR BLOOD SUGAR. And people always think that these complications are from too many highs, low blood sugar is just as bad, maybe even worse. What was the results of your last h1ac? You found out you had the condition 7 months ago, has your blood sugar been stable since then.

So these new blood vessels formed in your eye and started leaking? how did this appear in your vision? i'm just curious...You say you have no vision in the centre of your right eye, have the docs confirmed that this is because of the blood leak? Diabetic retinopathy can cause retina detachment and a vitrectomy (gas bubble in the eye) can push the retina back into place. do you have any detachment?

I have so many questions for you, i'm sorry. The eye doctor who diagnosed your condition, did he shine a bright light into your eye and tell you to look up, down to the side etc...? When i thought i had diabetic retinopathy i went to an eye doctor who could do an optomap (takes a picture of the inside of the eye) so we could see everything that was going on inside of the eyeball. All i can stress right now is to keep your blood in normal range (if it isn't already) as best as possible, i have hope that doing that can slow down the condition from getting worse too quickly, i'm not a doc or anything but i've read up this. I really hope that your condition can be reversed.

oh and to the person above who said the retina is connected to the brain...that is not true, it is the optic nerve that is connected to the brain.