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Retinopathy can get anyone !!

Discussion in 'Diabetic Retinopathy' started by elmacri, Mar 7, 2012.

  1. elmacri

    elmacri · Member

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    My Partner is T1 with Retinopathy.
    Both eyes are lasered to the max.
    He cannot have anymore either.
    The thing is that the doctors have said his vision is good and they don´t feel they can do anymore at the moment.
    They talked about replacing the jelly but only want to do that if his sight was bad.
    So basically we are left waiting for his eyes to bleed so much that he losses his sight and then they will replace the jelly.
    We are devastated.
    He is 37 and we are just starting a family.
    I spoke to the doctors and now understand´that this was caused from not controling his T1, he use to be an alcolholic before i met him and is now t total.
    However i am now trying to frantically learn all about T1 and have realised his diet has also been terrible. I feel guilty i didn´t realise over the last four years of being with him.
    I just thought he couldn´t/shouldn´t have sugar.
    Now my eyes are opened to carbs too.
    So i am now in control of his diet and am hoping that that will somehow help his eye situation.
    Sadly its too late for his brother who is 9 years older then him.
    He had glucoma and lost most of his sight, over the last year he has also had both his legs amputated and a finger of each hand.
    His kidneys are failing and he has dyalasis every two days.............. I so hope my efforts with my partner are not too late. He too is trying very hard. I think he just hasn´t had the help needed over the last few years.
    His blood sugars are up and down while he adjusts to his new diet and its hard trying to calculate the right ammount of insulin. Fingers crossed over a short time we will both become use to it and his eyes will stagnate rather then getting worse!!
    If ANYBODY is out there that thinks its ok to eat what they want and it won´t happen to them............think again. This thing creeps up on you and before you know its too late.............Be safe and whatch what you eat.
     
  2. hanadr

    hanadr · Expert

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    elmacri
    `I'm sorry your husband has had such bad experiences as a result of bad bg control. Some damage CANNOT be repaired, but some can definitely improve with really good control.
    I've had people argue with me over this, but Ibelieve that since non-diabetics have HbA1cs around 5% that's the target to aim for. It's difficult to achieve in T1s, but some have managed.
    My own husband is T1 with multiple complications;eyes, feet and kidneys. I have managed to get him to keep better control over the last couple of years [he's 65] and everything has stabilised. Nothing is continuing to get worse, including the kidneys.
    He did have the vitrectomy procedure [eye jelly removal] for a retinal bleed a couple of years ago and it did more harm than good. A retina that's had a lot of laser is very fragile and his tore. What sight he had in that eye was lost. He'll never allow that procedure again and is trying to make sure it's not needed again. The retinopathy he has is now arrested.
    By the way, he's not one of the 5% club. his last result was 6.5%.
    Hana
     
  3. chocoholicnomore

    chocoholicnomore Type 2 · Well-Known Member

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    So sorry to read about your husband and his brother.
    Thank you so much for sharing it and warning others of the dangers of being complacent.
    I am afraid I am one of those others that keeps thinking the odd jaffa cake or two won't do any harm.
    Deep down I know that it will but, physcologically, I feel fine and it doesn't look or feel as if it will do any harm.
    Reading your post has given me a shock.
    I really do hope that your husband's health improves with the new eating regime and wish you all the best.

    Thank you
     
  4. WhitbyJet

    WhitbyJet · Well-Known Member

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    I am so sorry to read about your husband and his brother and hope that your husband can go on and lead a life as healthy as is possible.
    Your post ought to be made a sticky, its a warning to everyone, no matter what type of diabetes they have.
    I was eating the wrong things for a very long time, the medication that I was prescribed didnt cover the amount of carbs I was eating, I followed traditional carbs with every meal advice. My bg levels consistently higher than they should have been I developed a range of complications as a result and as you say, they do creep up on you. You dont notice at first, I was seriously ill for a while.
    With low carb I have managed to reverse some of my complications, but neuropathy is still affecting me, I dont think it will ever go away completely.

    I know so much better now, thank goodness, but my heart drops each and every time I read about someone saying they have had chocolate biscuits or bread or whatever, that their bg was above the recommended guide lines and that they got away with it.
    Diabetes is totally underhand, it tricks you, you think you get away with it, but complications build up silently, the effect is not immediate until one day 'bang, wallop'.
    Please everyone, dont let it happen to you x x
     
  5. smidge

    smidge LADA · Well-Known Member

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    Thank you to everyone who has contributed to this thread - and so sorry for your problems.

    I try to keep tight control of my BG. My GP advises relaxing the control and running BGs higher - I ignore him. WhenI'm tired of the arguments and waivering, posts like this remind me why I'm doing it.

    Thank you.

    Smidge
     
  6. elmacri

    elmacri · Member

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    Thank you all for your kind words, although as you all know its good BG we need not kind words. If only things were that simple !!
    I too think it would be good to make this a sticky and the people like you chocoholicnomore can re read it over and over everytime you want to sneak a jaffa cake. ( Really its justs not worth it in the end)
    I am not diabetic and use to think it was difficult just being on a diet to reduce my weight a bit............now, things have changed, living with my partner has made me realise how stupid i was and weak, i would lose a 5 lb and then put on 7 with excuses coming from every angle. Now i have changed our way of living ( something i never thought i would really do) and in helping my partner to eat a better diet i have lost a stone and a half and its still coming off. My partner too is trimmer, something that can only be a good thing.
    Please please please take note before it too late.

    @ WhitbyJet, i really hope you manage to continue on your path to good health, you have been the wrong way and have seen whats waiting and i´m sure you will agree its nots worth it.

    @ hanadr, i too am very sorry to hear about your husband. I have heard that on very heavily lasered eyes there can be a preblem and thats why our eye doctor is so reluctant to proceed. My partner is only 37 and other then the retinopathy his vison is very good. My aim is to stop it from progressing any further if we can. since taking control of his diet he has had no more bleeds ( fingers crossed)
     
  7. chocoholicnomore

    chocoholicnomore Type 2 · Well-Known Member

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    Just wanted to add that I've constantly been thinking of this post and I haven't had a jaffa cake (or anything else that I shouldn't) since I read it.

    I keep repeating to myself that it's not worth it (although it's very diificult as it doesn't raise my BG levels and I don't see any bad effect from eating the wrong stuff).

    Thank you again for posting this and making me think alot more about what I eat.

    I agree it should be made a sticky.
     
  8. hanadr

    hanadr · Expert

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    chocoholicnomore
    Diabetes is sneaky. it causes damage without causing symptoms. It's only after most of the damage is done that most people notice. That's why there's an NHS policy to monitor everyone at least annually. Unfortunately not all PCTS are on target for this and the blood glucose targets HbA1cs they set as desirable are nowhere near tight enough to ensure patient health. So often the targets are modified to make things "Easy" for the patients, so they don't have to change their lifestyle too much. That attitude accepts the price of amputationsand blindness. A few years back, I was at a meeting where a representative of the PCT reported that fewer than 50% of diabetics in its care reached HbA1cs of 7.5% or lower. I don't know current figures. However that was apparenly better than a lot of places. Bernstein now argues the NORMAL HbA1c is between 4.2% and 4.6% and that even non-diabetics with numbers in the 5.5% range exhibit diabetic-like complications.
    How many of us get into that range? My volunteer colleague, the Diabetes Specialist Nurse [Sister] at the local clinic says she sees few patients in single fiures.
    That's a scary as my sums!
    Hana
     
  9. daisy1

    daisy1 Type 2 · Legend
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    Changed to Sticky
     
  10. WhitbyJet

    WhitbyJet · Well-Known Member

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  11. elmacri

    elmacri · Member

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    @ hanadr ,
    those figures are shocking.............although i can see how easily it could happen. My partner had the last reading before changing lifestyles of HbA1 cs of 8.6, He thought this was ok and one doctor even said it was high but not too high. My partner being an ex alcolholic remembers when he had fiigures 10 and 12 so to him he thought he was better then before. :cry: Why didn´t one of the doctors sit us down and say " These figures are too HIGH" something needs to be done. Instead they just talk about treating the problems he had developed and not about better control.
    I for one cannot wait to see our next reading for HbA1 cs. I have a feeling it will be so much better. It is hard working out what to eat and i am spending a lot more time online looking at recipes educating myself of different food types and ways of cooking, But to be honest its all just part of our new lifestyle.

    @ daisy1 , thanks for making this a sticky. :thumbup:
     
  12. jopar

    jopar · Well-Known Member

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    @ hanna

    My husband had 2 vitrectomy and a reattachment of his retina, sad really has there was no signs or warning, he'd had his eye specialist check up several months before... No signs of dodgy veins, never even had any laser treatment, but the first bleed and only bleed was major which also detached his retina, that as Dec 1999, and they operated several weeks later... The cleared the blood and reattached the retina, he lost part of his peripheral vision and his night vision, not the greatest of problems... He had to stay in hospital for over a week, as he had to lay flat on his back this was to hold the gas bubble that was holding his retina in place in place... Then once home he had to do 'posturing' where he had to lie in certain positions for set period of time and only allowed to sit up for short periods of time... He had one sap with a laser on this eye 3 months after his op..

    What got me at the time, he'd had changed his shift pattern about 6 months before and started nights, his control went belly up as he struggled to control with 2 jabs a day, and refused to go onto multi daily injections, still wouldn't listen even after this constantly refusing to change regimes... In 2004 he went for his check up, they picked up that his other eye was just about to go so had him straight in to operate on it... This op wasn't so intense, no gas bubble or posturing involved, and a warning that even though they were operating, it was purely to save the sight he had and not to improve it... Amazingly the operation improved his sight he didn't need his glasses after it the surgeon was taken back with this and really chuffed...

    He finally listened to reason, and change his regime to MDI, and never had a problem since and apart from monitoring the cataracts which is a fore gone conclusion that they would appear due to the operations, he had his first one replace almost 3 years ago... And next month it's likely they will book him in to have his other cataract replaced..

    @ elmarci..

    As you see yes hubby went through a bad patch in a short period of time, due to being a stubborn so and so, but once he went on to MDI and we stabilised his control no further problems so try not to worry has with your help (off which you've already made a big difference to him) hopefully you will keep everything at bay...

    A word of warning, even though yes getting his diabetes under control and at better levels is important, doing this too quickly can aggravate underlying problems and also cause damage... So you may need to bring his levels into a stable range before bringing down into a normal range over several weeks rather than trying to do it all in days or a week...

    Fortunately for my hubby I'm also a T1 diabetic, so I know what's what so no fooling me, you say that the doc's in the past never warned him that his levels were too high so heading towards problems, if your partner is anything like my hubby, they probably did their best to warn him about his control.. he's gone yeah yeah in an half listening way, then walks out the door, then due to lack of time the doc hasn't giving enough information to how they may improve things, so they've keep doing what they've been doing and nothing really changes....
     
  13. Unbeliever

    Unbeliever · Well-Known Member

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    I would just like to reinforce Jopar's warning about brining levels down too quickly. I had a massive bleed in my eye through my levels being brought down too quickly and macular oedema because I had previously been taking rosiglitazone.

    After several years of treatment I now accept that I am one of a very small group who do not respond to treatment for this condition. Although , for the moment, they are still trying.

    As Jopar says- stablity is the most important thing and reducing levels slowly. Since the initial bleed I have suffered others -whenever my levels FELl. Of course I am glad they are now low and stable to avoid other complications but it has not helped my eye condition.. I have read that it can take 3 years to do so.
    Unfortunately reducing levels can be a bit unpredictable . Mine happened overnight on first taking glimepiride. I was so pleased - and so was my doctor at the time. I don't want to frighten anyone but just bear it in mind - slow and steady is the safest way.
     
  14. shop

    shop · Well-Known Member

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    Hi Elmarci,

    So sorry to hear about your partner and his brother. Its posts like yours that make us all sit up and listen. I am only 6 yrs in and am only just learning to carb count. We all have the moments where its easier or wishful thinking to forget that we are diabetic. Your post will give us all a jolt to take our health and future seriously.

    Thanks for your thoughtfulness.

    Lucy.
     
  15. Leeds Lass

    Leeds Lass · Well-Known Member

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    My boyfriend had another bleed this weekend after being sick with a stomach bug, bit of a bummer really as the last one had nearly cleared and now it's back to square one again! His is from traction I think not from new vessels but it's still a blow!
     
  16. noblehead

    noblehead Type 1 · Guru
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    That's a shame :(

    Hope the sickness and bleed clears soon!
     
  17. Unbeliever

    Unbeliever · Well-Known Member

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    So sorry to hear about your boyfriend Leeds Lass. I know how that feels Just before Christmas I was told that after more than four years the scan on my left eye was almost normal! I was so pleased alhough I knew there were more injecions and laser in store for the other eye. When I went back in February expecting some laser treament on the right eye I was devastated to hear hat I had suffered further bleeds and now have to have further injections in both eyes. The left eye has been lasered almost as much as it can be . I have had a cataracts op on that eye - necessary on accont of all the surgery bu i am resisting it on my right for as long as posssible because I have fairly stable vision in that eye.

    I almost feel that I would rather not have been told of the improvement in December as it was so shortlived! On the other hand it proves it can be done.

    So best wishes to you both and I hope you receive better news when he gets over his sickness.
     
  18. elmacri

    elmacri · Member

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    Just to keep every on updated. Firstly thank you for all your advice and well wishes.
    Yesterday we got my hubsands latest HBA1 results back. If you remember before it was 8.6, i have had him on a low carb diet for about 2 months now and the latest figure was 8 I am really pleased we are seeing an improvement.
    It has been hard work and it has had its moments when i know he has eaten something he shouldn´t etc but overall he has taken to it well. Fingers crossed in 6 months time when he has his next blood test the results will be even better. :thumbup:
    Gracias a todos. :D
     
  19. noblehead

    noblehead Type 1 · Guru
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    That's excellent news elmarci :D ......keep us informed of his progress!
     
  20. shop

    shop · Well-Known Member

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    That's excellent news elmarci :D ......keep us informed of his progress![/quote

    Pleased for you and your Hubby. and yes let us know how things go. xxx
     
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