proliferative retinopathy I'M SO SCARED

[Robinredbreast]

Hi Leb/RRB/anyone!

I know I should be pleased that my eye is doing well, I am actually a little bit sad tonight

I have realised that I don't think I could go through with another pregnancy as I just couldn't risk the retinopathy coming back, I'm trying to shut the door on it so I can get on with my life and getting pregnant again would be like opening the door to it. Also no one can quantify the risk, Mr. C said think of the worst case scenario and whether you can risk it, well for me I don't think I can as the week I had the bleed I just about lost the plot and I can't go through that again and we'd struggle to find the money for private treatment again.

I don't know if adoption will be right for us, it's not that it wouldn't be my biological child, that doesn't faze me, it's more that it would very likely be a child rather than a baby, I think very new babies are very rare in adoption, and what I really want is another baby fresh out of the womb not a child with a history when I haven't been there.

Why does this retinopathy have to affect so many areas of my life - my work (through driving), my family?

Oh well at least we have the one, I keep telling myself that a lot of people don't ever get the chance to be a parent at all.

I just really wanted two to complete the family and give him a play mate, but I really don't think I could go through with it

What would you do if you already had one, would you leave it at that or risk it?

AC my heart goes out to you, its such a horrible situation that you are in.

I have 1 child at home and 2 grown up children. I was 42 when I had my last child, who is 11 now. I know deep inside she would like a playmate and it is a bit lonley for her. She goes to lots of clubs, in term time, and has a friend coming round tomorrow, her friend was also here last week and we all went out for the day . I try to make sure she does has company of her own age, but I do feel quilty. Her birth was an emergency and after that, even if I was in my 30's, I don't think I would of gone through another pregancy, just in case. The friend who is coming round tomorrow is one of seven children and seems to enjoy her big family and wants to work with children when she leaves school.

Only you can make that decision, do the positives out way the negatives? How would you cope if your sight was put under a great strain again? Some will only see the positives and go ahead anyway.

An only child need not be a lonely child. I am run off my feet during term time with after school clubs etc Phew!!!!

I'm sure your boy will grow up happy, secure, with confidence and most of all.............loved. Best wishes RRB x

 

[SouthernGeneral6512]

Hi Leb glad you had a good holiday but sorry to hear your eyes are no better. It's not long til your appointment with the consultant now is it.
I saw Mr. C today and my eye is healing well. I did a field test just for practice and got all the points with both eyes open. With each eye separately the right eye was perfect but the left eye there was one blind patch but he could not say for sure as I'd not been focusing properly during the test so the reliability was impacted - anyway not that it matters too much as the DVLA test is the both eyes open one which was fine.
I spoke to him about having another pregnancy, basically he said it is a risk and that worst case scenario I may need more laser. He said everyone is different so it is hard to say what will happen but I need to decide whether it is worth risking the worst case scenario.
So, the big news now is that we are thinking of adoption. For me it is about more than the pregnancy as I have a genetic form of diabetes which means any child would have a 50% chance of inheriting it. We are just tentatively thinking about it, but I am going to a drop in session run by an adoption agency on Thursday to get some more info. It may be that it will not be right for us but who knows - we may decide it is the right thing to do. Although ideally I'd have my own child, part of me loves the idea of being able to have a child without going through another pregnancy. I'm not sure I could go through what I've just been through again, particuarly in the right eye which is my better eye. And especially not in a pregnancy. Anyway it is something to consider.
Well I am ok to start my new job now, starting next Monday and really looking forward to it, I'm ready to go back to work now.

You really are an inspiration ant_carb all that laser and now surgery and your visual field is still good :clap:.

Don't worry about your kid being an only child it never did me or Frank Sinatra any harm

 

[SouthernGeneral6512]

Do so pleased 4 u ac. As 4 havin another child whatever u decide will b amazing. Its a big decision either way and i feel both options are amazing 4 dufferent reasons.
I am back at eye unit on wednesday. Its weird cis im so much calmer about it all now
even tho my vision is worse i can b positive about it at the moment. Who knws that may change after i see the doc but 4 now im dealing with it all alot better.
Ive been guven the funding 4 an insulin pump which im getting tomorrow. Although its been talked about for over 5 yrs once the duabetic consultant gave the nod itd all gone so quick. Less than a month infact so im keeping my fingers crossed it will help with my oberall control. God kniws ive tried EVERYTHING else.
Once again ac im so pleased for u its nuce to hear some gd news.
Rrb all sounds promising 4 u 2 as they r leavin u 6 mnths it must mean ur eyes have responded 2 the laser.
Ub i hooe ur in a better place right niw. Like many others on here i pray that things will at least stabiliser 4 u if not better.
Take cate everyone. Will keep u postef about my appointment on wed xx

All the very best on tuesday Leb :thumbup:

 

[the_anticarb]

Thank you both. RRB, I don't even feel like it is a decison I have to make. I'm just so scared of the retinopathy coming back that I don't think I could do it. So I guess that is my decision. It doesn't feel like a rational decison where i've weighed it all up though, it's an emotional decision based on fear - fear of my eyes ever getting worse again. I guess my fear of that happening is stronger than my desire to have another baby. So it must be a very strong fear indeed as I really, really wanted another baby. Until today I thought the risk of the retinpathy coming back woudl be quite low AND that it was a risk I was prepared to take. But I think now, I just realise that it's too much of a risk. It's a very difficult decision, not to make - making it was easy - but to accept.

 

[Robinredbreast]

Thank you both. RRB, I don't even feel like it is a decison I have to make. I'm just so scared of the retinopathy coming back that I don't think I could do it. So I guess that is my decision. It doesn't feel like a rational decison where i've weighed it all up though, it's an emotional decision based on fear - fear of my eyes ever getting worse again. I guess my fear of that happening is stronger than my desire to have another baby. So it must be a very strong fear indeed as I really, really wanted another baby. Until today I thought the risk of the retinpathy coming back woudl be quite low AND that it was a risk I was prepared to take. But I think now, I just realise that it's too much of a risk. It's a very difficult decision, not to make - making it was easy - but to accept.

AC (((((((((((( hugs)))))))))))) X RRB

 

[shop]

Hi Leb/RRB/anyone!

I know I should be pleased that my eye is doing well, I am actually a little bit sad tonight

I have realised that I don't think I could go through with another pregnancy as I just couldn't risk the retinopathy coming back, I'm trying to shut the door on it so I can get on with my life and getting pregnant again would be like opening the door to it. Also no one can quantify the risk, Mr. C said think of the worst case scenario and whether you can risk it, well for me I don't think I can as the week I had the bleed I just about lost the plot and I can't go through that again and we'd struggle to find the money for private treatment again.

I don't know if adoption will be right for us, it's not that it wouldn't be my biological child, that doesn't faze me, it's more that it would very likely be a child rather than a baby, I think very new babies are very rare in adoption, and what I really want is another baby fresh out of the womb not a child with a history when I haven't been there.

Why does this retinopathy have to affect so many areas of my life - my work (through driving), my family?

Oh well at least we have the one, I keep telling myself that a lot of people don't ever get the chance to be a parent at all.

I just really wanted two to complete the family and give him a play mate, but I really don't think I could go through with it

What would you do if you already had one, would you leave it at that or risk it?

Hi AC,

This is such a difficult time for you and when all is said and done only you and your Hubby can decide. I wanted another baby a few yrs back. My Hubby not so keen because he is worried about me and a future baby ( We had a scary labour with my son, He was 10lb emeg section and wasnt breathing when he came out, he is great thank God ) However I am 42 also have thyroid probs and my Mum had a congenital heart defect. ( My son also had to be screened for this before he was born and luckily was OK )
I have since read that one of the risks for having a Tetrology of Fallot baby is maternal diabetes. So you see there was something else to consider. I only have background retinopathy so dont have what you are going through.

I was excactly like you in that we have a healthy little boy and some dont even have that.

I hasn't been easy as I felt like I was grieving for a baby that might be, I have come through the otherside, have decided that getting my diabetes under control for a healthy happy future for the 3 of us is what is important.

I have recently had problems with management due to hormone fluctuations ( Dr says its perimenopause.) Maybe my body is telling me that the time for having babies is over and I can accept that more easily.

I had to reply as have felt just like you. I do not want this to come accross as trying to influence your decision as its only you that can do that. I just wanted to tell you that I know how you feel.

Sending best wishes and whatever you decide wishing you health and happiness,

Lucy xxx

 

[shop]

Hi AC,

I also wanted to say I know what you mean about wanting to give your son a playmate I would have loved for my little boy to have a baby brother or sister and he would have made a fantastic older brother. He has been asking recently as lots of kids at school have had babies recently. That is the only time I feel upset now. I feel so guilty. I hope one day I can explain to him and he will understand. I think sometimes things happen for a reason not to make to much light of it a few weeks back he was going on and on about a baby brother of sister the day after one of the cows had a calf. He named her and is keeping an eye on her!! :lol:

I know its not the same but he hasnt mentioned a baby since :wink:

Anyway your situation may turn out totaly different.

Lucy xxx

 

[shop]

Do so pleased 4 u ac. As 4 havin another child whatever u decide will b amazing. Its a big decision either way and i feel both options are amazing 4 dufferent reasons.
I am back at eye unit on wednesday. Its weird cis im so much calmer about it all now
even tho my vision is worse i can b positive about it at the moment. Who knws that may change after i see the doc but 4 now im dealing with it all alot better.
Ive been guven the funding 4 an insulin pump which im getting tomorrow. Although its been talked about for over 5 yrs once the duabetic consultant gave the nod itd all gone so quick. Less than a month infact so im keeping my fingers crossed it will help with my oberall control. God kniws ive tried EVERYTHING else.
Once again ac im so pleased for u its nuce to hear some gd news.
Rrb all sounds promising 4 u 2 as they r leavin u 6 mnths it must mean ur eyes have responded 2 the laser.
Ub i hooe ur in a better place right niw. Like many others on here i pray that things will at least stabiliser 4 u if not better.
Take cate everyone. Will keep u postef about my appointment on wed xx

Hi leb good luck going onto to a pump tomorrow and best wishes at the eye clinic on Wednesday :thumbup: I will be getting lots of things crossed for you ( fingers, toes, legs and arms ) . Good positive vibes are being sent your way as well. Best wishes RRB X

Good Luck Leb for Wednesday xxx
Good Luck RRB for the Pump xxx

Lucy.

 

[leb]

Ac i wish we could guve u the answers ur wantin but the truth is only u can make such a huge decision. Reading ur posts it sounds like u knw ur answer. Please please dont feel guilty about ur son being an only child. Look at it like u have been truely blessed to have been able to have any children. I know its hard but mayve if u have decided that the rusks are too great then ficus ur thoughts on the baby u have and nit the one u may not. as rrb said an only child doesnt gave to b a lonely child.
Its such a shsme after all u have been through that u r still feelun sad. Stay strong ac thinking if u and sendung lotsa hygs xx

 

[the_anticarb]

Thanks Leb. I'm feeling a little more positive today - I'm seriously going to look into adoption and whether that would be an option. There must be some babies that come into the system (well, under a year or so old, does not have to be brand new!) and if we've already had experience of looking after one then that may work in our favour. I just hope my health issues will not be an obstacle, as I know they make you do a medical as part of the approval process, although my diabetes is pretty well controlled now and my OH is healthy.

Good luck for your appointment tomorrow and let us know how it goes - I will be thinking of you x

 

[leb]

Hi all
Well spent the morning at eye clinic. feel a but overwhelmed niw. Been told gitts have urgemt laser in wot i thought was my gdd eye and gotta have op on my bad eye. :-( um really scaref about it. They said its a major op ans thetes no eway to do it under local ans sedstion. i saw the condultant as promusef an i must say he was vety honest about it all which i think i prefer to being told to cgill out and not worry.
He has saud the scar tissue is causing it to keep bleeding but said they dont take tjis op lightly eith insulin dependant diabetics. He recons thetes sn 80% chance of getting cataract wirhin 2 years of having any form if surgery on tje eye. He has also saud i may need a further mire minir op after to wadh the jelly out again!!!! Just feels never ending. The fact he has said my good eye cld do the same necause it gas the vesseks growinh like tge bad eye just felt like a kick in the gut.
Ive been given a date of 28rh aug already so realky cant complaun as far as nhs gies. I did ask the consultant sbout pfivate trestment with himsrlf and he saud i would gdt no real benefit as he was reccommending the op to be done soon anyway. im quite surprised hiw quick to be honest .

Hoor ur sll ok x

 

[Unbeliever]

Hi all
Well spent the morning at eye clinic. feel a but overwhelmed niw. Been told gitts have urgemt laser in wot i thought was my gdd eye and gotta have op on my bad eye. :-( um really scaref about it. They said its a major op ans thetes no eway to do it under local ans sedstion. i saw the condultant as promusef an i must say he was vety honest about it all which i think i prefer to being told to cgill out and not worry.
He has saud the scar tissue is causing it to keep bleeding but said they dont take tjis op lightly eith insulin dependant diabetics. He recons thetes sn 80% chance of getting cataract wirhin 2 years of having any form if surgery on tje eye. He has also saud i may need a further mire minir op after to wadh the jelly out again!!!! Just feels never ending. The fact he has said my good eye cld do the same necause it gas the vesseks growinh like tge bad eye just felt like a kick in the gut.
Ive been given a date of 28rh aug already so realky cant complaun as far as nhs gies. I did ask the consultant sbout pfivate trestment with himsrlf and he saud i would gdt no real benefit as he was reccommending the op to be done soon anyway. im quite surprised hiw quick to be honest .

Hoor ur sll ok x

I am pleased your concerns are being addressed leb. You have to get to consultant level before that happens . They generally tend to be more direst and open as they can afford to be.
It sounds as though you are un good hands now . I can imagine it is all overwhelming and scary just now but he has told you what to expect - and it won't all happen at once .
If you know you may neeed a vitrectomy later at least you know that if you have further problenms something can be done and has been taken into consideration.
Cataracts are a very common side effect of any eye surgery but tthey don't always grow very quickly. I have had one removed because it almost otallty obscured the central vision in one eye but the other is not doing much harm 2 years on.

Its a lot o take on and although you may not think so just now the main thing is that someone is now overseeing your case and
has a proper treatment plan and has warned you of any consequences in the future.

It is very hard and very confusing at first when they don't seem to take you seriously and are very vague in explaining what is happening but you are past all that now.

I shouldn't worry about the private treatment. Save your money for procedures you can't get on the NHS or for when there aree very long waits.

I am always amazed when people insist on private cataracts operations which are performed on the same days as NHS ops in my hospital I can't understand why they would want to do that. the waiting list isn't long and I don't see that they get better reatment . In fac it is probably less alien to he NHS patients who know the surgeonn better.
At least you don't have long to worry about it leb.I am very glad that some solution is in sight for ypu and hope you don't become too anxious about it.

 

[leb]

Thanks 4 ur kind words ub.
Hiw r u doin at the momemt have u beem back to theclinic agsin?
X

 

[the_anticarb]

Hi Leb

Sorry to hear that your eyes are not so good, but I'm glad you will have the vitrectomy so soon - it really is the best thing. It's nothing to be scared of, if you will be asleep for it then you don't even need to worry about watching it happen! (which I didn't find scary btw, I was just fascinated). Sounds like they are doing similar to you as they did to me (apart from I was awake) as I was told it was the scar tissue pulling on the blood vessels making it bleed too.

Don't worry about the cataract side of it, or needing a wash out. I think about 10% of patients need a wash out so you will probably not be one of them. These things although not pleasant are just procedures. The important thing is that your eye is getting sorted, I'm so pleased they are giving you the op and not fobbing you off with more laser that is the main thing.

The vitrectomy really does stop it all in its tracks as it removes the eyeball jelly, the vessels and the scar tissue so although it's not a complete cure as the vessels could grow again in the future, it's really going to stop the bleeding. Also i have heard that the growth hormones that cause the vessels to grow are released into the jelly, so when they remove this they take the growth hormones away which is a good thing.

The laser may well work in the other eye so you may not need the op in the future but if you do then you know that option is there.

Sounds like you are going to get similar treatment on NHS to what you would have got privately so you're saving your money there. If they hadn't said they would do the op so soon, or said they'd wait and see I'd be encouraging you to go private but if they can do it on 28th that's great as not long to wait. Do you know if you will have an avasting injection first to prevent bleeding during the op?

Don't worry you are going to get sorted now and soon your bleeds will be a thing of the past. Bet you can't wait til after the op when the annoying streaks and dots in your vision are no longer there.

 

[leb]

Hi ac yes i am pleased as u say its not long to wait but am very nervous too. Im going for my pre op next week so will find out more tjen. All i knw is tjat its gonna b done under general and i have to go in the night b4 because of thr diabetes.
How r u ac? Have u startef ur new job yet?

Hope u r stsyin positive x

 

[Unbeliever]

Thanks 4 ur kind words ub.
Hiw r u doin at the momemt have u beem back to theclinic agsin?
X

Yes i went back yesterday just o have the pressures checked. They have come down from he late 30s to 18 and 20. While this is good I won't know what I really need to know until I see he consulant again when he checks my last laser treatment on 18th September.

As i expected he had left insructions that they should tell him the resulkts. I saw he head nurse in the Nurse- led clinic and she went off to find him but said he had just started lasering a patient and could not be disurbed.

I was a bit comncerned about whether i should continue taking the drops or not so she asked a random Dr who gave the same answer i would have if I wanted to cover my back. That was go on taking them until your next appt. I couldnt do that because i only have 2 weeks worth of drops left. So they gave me another prescription and old me to ake it to the hospital pharmacy.

Now whenever i find myself questioning the consultants instructions - I always find out that he doesn't miss a detail and always has my best interests at hear.

Las ime he gave me the prescripio for he drops he told me o take it o my own chemist. I wondered why I couldn' ake it to the hospital pharmacy but there was no ime to ask.

this ime I trotted off to the pharmacy with he prescripion and waited and waited....Evenually i was called o he counter and presented wih a huge bag. the pharmacist started giving me a long list of instructions. I was bewildered. wasn't it the same as last time.? Apparently not . they don't stock one of the brands of drops i was prescribed and insead gave me more bottles which they said all added uop to the same hing.
I can now see why the consultant told me to go to my own chemist!
"Its a shame whe you only get sense from a consultant. Have to ask what the others are for. padding?
Now I just hope he sees the file before i have to put about seven lots of drops into each eye every day!

The present lot are causing bad hypos some nights.

It did occur to me to wonder whether just giving me dropswth the injections might be an opion. I will just have to wait and see.

 

[the_anticarb]

Hi Leb

I start my new job on Monday and I'm pretty much back to normal now activity wise after the op.

I think the laser has affected my visual field in my left eye though as I have a fuzzy cloud in my periphery in my left eye, which I think is where the laser has gone into the bit of the retina you actually see with (although it is very peripheral so I don't notice it unless i look for it). I'm not happy about this, as it is (probably) permanent damage. I asked Mr. C about it but at the time I thought it was intermittent, so he said not to worry about it, but now I think it is there all the time just I don't notice it unless I look for it. I'm going to see my optician to see if he can shed any light on it. It may be that it's not permanent, but I don't think so as I'm four weeks post op now and it's still there so it's probably here to stay. I'm obsessed with waving things in the corner of my eye to see if I can notice it!

I'm still very confused about the whole issue of having another baby. I joined an adoption forum and met a couple of other mums who like me, had one of their own but couldn't have another. One had to have an emergency hysterectomy due to haemmorhage in labour, another was advised not to have any further pregnancies due to a kidney condition. In a way it would be easier if someone could advise me not to , but the doctors are really reluctant to do that in my case it seems! Every doctor seems to say something different, I've been told that its a low risk for it to recur in another pregnancy by one, another said I may need more laser.... I feel I can't make this decisoin with so little information. I guess no one can tell what will happen and the only way to be truly sure would be to not risk it. For me, losing my driving license woudl be a big issue as I'd lose my job. If there was a chance my driving vision would be affected by more laser I wouldn't risk it. So annoying that the cure for retinopathy is the dreaded laser which brings so many problems of its own! (visual field loss, night blindness etc)

What do you think? Am I potty to even think about getting pregnant again? I never had the proliferative level of retinopathy before I was pregnant, but then I did nosedive my hba1c due to unplanned pregnancy. So I'll never know what set it off in the first place, the pregnancy itself or the drop in hba1c. As obviously my hba1c won't drop like that again as I'm being a good girl now! But even if the risk is low, is it a risk worth taking?

 

[the_anticarb]

Does anyone who's had a lot of laser know what I mean by this fuzzy patch in my periphery? I'm assuming its from the laser but would be good if anyone else has had similar symptom.

 

[Robinredbreast]

Hi all
Well spent the morning at eye clinic. feel a but overwhelmed niw. Been told gitts have urgemt laser in wot i thought was my gdd eye and gotta have op on my bad eye. :-( um really scaref about it. They said its a major op ans thetes no eway to do it under local ans sedstion. i saw the condultant as promusef an i must say he was vety honest about it all which i think i prefer to being told to cgill out and not worry.
He has saud the scar tissue is causing it to keep bleeding but said they dont take tjis op lightly eith insulin dependant diabetics. He recons thetes sn 80% chance of getting cataract wirhin 2 years of having any form if surgery on tje eye. He has also saud i may need a further mire minir op after to wadh the jelly out again!!!! Just feels never ending. The fact he has said my good eye cld do the same necause it gas the vesseks growinh like tge bad eye just felt like a kick in the gut.
Ive been given a date of 28rh aug already so realky cant complaun as far as nhs gies. I did ask the consultant sbout pfivate trestment with himsrlf and he saud i would gdt no real benefit as he was reccommending the op to be done soon anyway. im quite surprised hiw quick to be honest .

Hoor ur sll ok x

Dear leb I'm sorry to hear of your forthcoming operation, but at the same time at last something is now being done to help you. I really cant imagine what you are feeling right now, I can really only guess. I already have cataracts in the dodgy eye and work will have to be done on it, but not yet. Our eyes are our windows and I wish you a clearer and a brighter view after the operation. Sending you lots of good wishes. Take care RRB X

 

[Robinredbreast]

Does anyone who's had a lot of laser know what I mean by this fuzzy patch in my periphery? I'm assuming its from the laser but would be good if anyone else has had similar symptom.

Hi AC Sorry, but i cant really help with the fuzzy patch I'm afraid. In laserd eye i keep gettimg what feels like a foreign object in there, but I know nothing has gone in there. Like you, i am assuming its due to laser treatment, but that was a few months ago now.

I hope you get some helpful advice soon about the fuzziness, it just makes it that bit easier to know what exactly going on in our eyes :?

Take care and best wishes RRB