The never ending story. ?>

The never ending story.

I think I was about four or five months into my pregnancy when a routine appointment at my optometrist found a problem. I am a type one diabetic, so have always monitored my eyes closely, as blindness is a relatively common long term complication. I also knew that sometimes pregnancy canĀ  put added stress on the body of a diabetic.

The optometrist noted that I had swelling towards the centre of my retina, and a few abnormal blood vessels in my eyes. He referred me to a specialist, who diagnosed me with Diabetic retinopathy. He commenced laser therapy on my left eye, which was the worst. Basically he used an instrument to hold open my left eye, whilst he flashed lasers directly into my eye to ‘burn’ off abnormal blood vessels. Within days of this procedure, I had my first hemorrhage in my eye. It started with a few black spots floating around in my vision.

The specialist told me that the blood should re absorb into my eye eventually. He couldn’t give me a time limit. It could be weeks or months. He would continue with the laser therapy to get rid of the abnormal blood vessels.

The blood never reabsorbed. It continued to hemorrhage, despite weekly laser. Soon I could no longer drive. I could no longer read a book. What started out as spots became large black smudges that floated around my eye. The left eye was worse, but the right eye had regular spots on and off.

I was told once my body wasn’t under the stress of pregnancy, my eyes would stop creating abnormal blood vessels, and stop hemorrhaging. I gave birth to my daughter at 32 weeks, and could barely see out of my left eye, and had floating spots in my right.

Once she was home from hospital, and settled, I started back on the ‘laser train’. Every fortnight. Still my eyes bled. Still the blood didn’t reabsorb. I sought a second opinion. That specialist told me that if my previous Dr hadn’t have done the aggressive laser he had, I would have gone blind. In fact, he said that if I hadn’t have had my daughter eight weeks early, I would have gone blind. My body just couldn’t handle the pressure.

More laser. It’s difficult to describe what laser therapy feels like. The Dr holds your eye open with a lubricated instrument, kind of like a lens on the end of a thimble (for lack of a better description) It’s very unnatural and uncomfortable. A piece of machinery is moved up to your eye, and an extremely bright light is flashed into your eye, repeatedly. It feels like the light is stabbing the back of your brain. It goes right through you. The other eye see’s the reflection from the laser, and struggles to stay open, it hurts, like looking at the sun. I’m not allowed to close it though. The whole thing takes between ten and twenty minutes, depending on how much they do. Afterwards I have no sight in my eye, for about five minutes. It’s just black. Then sight comes back, but it is blurry for the rest of the day. It hurts to see. I know that doesn’t really make much sense, but it’s the only way i can describe it. My head will pound until the next day.

Finally, last year, after more than a year of regular laser therapy, the specialist tells me that the bleeds are getting worse, the laser is not helping. It’s time to operate.

My left eye is cut open. All the blood is cleared out. More laser on the abnormal blood vessels. I’m told that they got them all. That it should stop bleeding now. A week later I have the worst bleed I’ve ever had, and lose complete sight in my left eye. It’s never going to end.

Eventually the blood clears from my left eye. However, by this stage my right eye has started bleeding. The laser starts on my right eye. It’s never going to end.

I haven’t driven for nearly two years. I have not seen clearly for nearly two years.

Three weeks ago the specialist tells me he might not be able to get rid of all the abnormal blood vessels. Every time I have laser therapy it is damaging my eyes. (I can’t even tell you how many rounds I have had. I’ve lost count. I know it’s a LOT)

I am still developing new abnormal blood vessels on the optic disc of my right eye. There are several small bleed around the outskirts of my left, operated eye. My sight is not going to withstand a another pregnancy. I will need more laser on my left eye. He doesn’t know how much more laser he can do on my right eye without causing irreparable damage.

Today, he looks at my eyes. No improvement from the last round of laser. (or the million bloody rounds before) He reiterates again that he may not be able to get it all. I am young, (apparently!) he doesn’t want to damage my eyes with too much laser. What is too much?? I’ve already had two years worth. I will probably need an operation on my right eye, to clear out the blood that refuses to reabsorb.

He hammers it again, with the longest round of laser to date. I grip my hands in my lap, squeezing them tight together to try and distract from the torture in my eye. I just want it to stop. It’s not working. It’s never worked. My head aches all day. My eyes sting and hurt all day. I just want it to stop.

In three weeks I have to go back. So he can check to see, if miraculously, this time it’s worked. I still need more laser on the other eye. Heaven help me if the blood shifts, and obscures the vision in my left eye too. I just want it to stop.

Please. I don’t want to do this anymore.

 

 

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19 thoughts on “The never ending story.

  1. Oh Jane. Your blogs are so touching. You are living and coping with so much! Your strength is in your acceptance. Hold fast to precious Milla and you love for your husband.

  2. I am so sorry. MS has temporarily robbed me of my vision a few times now and I know how frightening it is. The endless round of doctors and specialists does indeed feel never-ending and is truly dispiriting. Sending so many good wishes and hopes for a brighter future your way.

  3. Oh Jane, that must be so frustrating and upsetting for you. I know it’s not the same, but I have horrible vision, apparently it’s the worst my optometrist has seen in somebody my age! I have my fingers crossed for you, hoping so much that the miracle will come! xx

  4. Jane, so many things in common. Name, type 1 diabetes, no sight in left eye and failing vision in right eye. I haven’t been able to drive for 20+ years. But I don’t have a child, so not driving is awful but do-able. I feel for you I really do. Endless laser treatment, numerous vitrectomies and no improvement. However, pardon the pun, but there is light at the end of the (endless) tunnel. You can and will keep going and live a happy life – I have, I am and I will continue to do so. Best of luck with everything. I’m with you in spirit ……… and in optholmology!
    Jane

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