Eyesight Problems?
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Prompted to write this post after reading Alans experience about his eyes.
In my very first interview with my nurse where I began to learn some of the facts regarding hepc she listed some of the side effects of treatment. One of them was that there was a small percentage risk of blindness and other lesser problems. She made a particular point of mentioning this because out of the 8 patients she has dealt with one had to discontinue tx after 2 months due to retinal bleeding.
This, amongst other things convinced me that whatever happened I would not be going on combo therapy!! This was August 2004.
However by September my nurse had persuaded me to go for a biopsy in order for me to make a more informed choice. I had the biopsy in November, and saw the specialists letter to my doctor recommending that I go on tx as within the next ten years I would have a progressive liver disease.
So in December I decided to go ahead and we set a date for tx Feb 1st.
One of the things that my nurse insisted on was a full eye test. She said that I should explain to my optician that I was going on interferon and to have a complete test.
When I saw the optician I got full eye lock and said:
“What I am about to say is serious so I want you to take note”. I then explained all about tx.
Well, when you impress upon people the seriousness of the situation you get excellent treatment and service. I was booked for two visits to the opticians and had 2 hours of the most exhaustive tests I have ever had. She had obviously looked the subject up since I first visited because I got all my questions answered.
I signed a waiver form at the hospital which said:
“Side effects can include visual disturbances” and “If eyesight reduced go to A& E immediately”.
The optician said,
“Any problems don’t wait to see me go straight to the hospital”.
My nurse emphasised this and said to phone her immediately if I got flashes before my eyes. As it happened after my second shot which I take at 9pm I awoke through the night and couldn’t open my eyes. This lasted for 10 minutes or so. I also got one white flash in my eyes. I reported all this to my nurse by phone the next day but I was seeing her that afternoon anyway so we sorted it out then.
For a few years before I discovered I was hepc+ I experienced problems with glare. The world seemed a lot brighter than it used to be. I put it down to the ozone layer and thought no more about it. Since starting tx though I have experienced a lot of problems with glare and have had some absolutely storming headaches. I never used to get these before.
I`d be very interested in anyones comments on this post.
I see tx as pretty much of a lottery depending on who you get and how well they have done their homework.
After 8 months of getting to know my nurse I can see that I have got one of the best.
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Prompted to write this post after reading Alans experience about his eyes.
In my very first interview with my nurse where I began to learn some of the facts regarding hepc she listed some of the side effects of treatment. One of them was that there was a small percentage risk of blindness and other lesser problems. She made a particular point of mentioning this because out of the 8 patients she has dealt with one had to discontinue tx after 2 months due to retinal bleeding.
This, amongst other things convinced me that whatever happened I would not be going on combo therapy!! This was August 2004.
However by September my nurse had persuaded me to go for a biopsy in order for me to make a more informed choice. I had the biopsy in November, and saw the specialists letter to my doctor recommending that I go on tx as within the next ten years I would have a progressive liver disease.
So in December I decided to go ahead and we set a date for tx Feb 1st.
One of the things that my nurse insisted on was a full eye test. She said that I should explain to my optician that I was going on interferon and to have a complete test.
When I saw the optician I got full eye lock and said:
“What I am about to say is serious so I want you to take note”. I then explained all about tx.
Well, when you impress upon people the seriousness of the situation you get excellent treatment and service. I was booked for two visits to the opticians and had 2 hours of the most exhaustive tests I have ever had. She had obviously looked the subject up since I first visited because I got all my questions answered.
I signed a waiver form at the hospital which said:
“Side effects can include visual disturbances” and “If eyesight reduced go to A& E immediately”.
The optician said,
“Any problems don’t wait to see me go straight to the hospital”.
My nurse emphasised this and said to phone her immediately if I got flashes before my eyes. As it happened after my second shot which I take at 9pm I awoke through the night and couldn’t open my eyes. This lasted for 10 minutes or so. I also got one white flash in my eyes. I reported all this to my nurse by phone the next day but I was seeing her that afternoon anyway so we sorted it out then.
For a few years before I discovered I was hepc+ I experienced problems with glare. The world seemed a lot brighter than it used to be. I put it down to the ozone layer and thought no more about it. Since starting tx though I have experienced a lot of problems with glare and have had some absolutely storming headaches. I never used to get these before.
I`d be very interested in anyones comments on this post.
I see tx as pretty much of a lottery depending on who you get and how well they have done their homework.
After 8 months of getting to know my nurse I can see that I have got one of the best.
******************************************************************************
posted by Paul | 12:44 PM
4 Comments:
There have been very serious eye problems in our home - we travel over an hour to an ophtholmologist (good lord, why doesn't this thing have spell check!)who was recommended as being especially aware of these issues(as is the case so often, not too many are informed of hepc issues) so . . . not sure if I can be much help here as I am not sure which came first: hepc or liver failure or transplant, in causing the problems, but he now does checks of vision and eye-health every three months. It changes. One thing that I will second, is that you have to inform EVERYBODY. I had to call the eye dr and have him personally call the charge nurse to get an ophthomology consult when my husband was in SICU after the transplant. The SICU docs thought they knew everything and would not listen to me regarding the eye problems. Also, the immuno-suppressants for transplant have helped the eye. I understand there are cyclosporine drops. Best of luck. I sympathize with your concern. Eyesight is scary stuff. I don't know if this is good or bad, but each new thing I think I can't deal with, soon just gets folded into our lives and we go on and can honestly say we do okay.
ps. still praying for you for a good result on the viral titre
After all that, I forgot to tell about the actual problem. Shhesh! Corneal erosion. Recurrent corneal erosion. Severity varies, pain varies (time of day, etc) but blurred vision and light sensitivity were worst symptoms. As I understand it, liver affects fluid balance in cells and all sorts of hormones and protiens which usually all work together to keep an eye healthy. Kidney failure causes as well (?) I don't know exactly how the cyclosporine helps this, somehow it triggers something in the glands that produce tears and restore balance. Extreme episodes required a "contact bandage" and gel into the eye 2x day; slight episode was light sensitivity and a trip to the doc. I may have some literature at home I could scan and email. The Dr. is Paul Turgeon MD, google might be helpful?
Thanks Kerry Grace.
The liver certainly seems to affect everything in the body. You are absolutely right about telling everybody - even if it forces them to look up hepc and associated conditions its done everyone a favour.
Thanks for the article you emailed me. I`ll let you know as soon as I have a result of pcr (hopefully by middle of May)
Paul.
Yes, Ron, truly in the vanguard. And because of blogging (and now the Forum) able to unite and pool our knowledge.
I`m still interested to hear of other peoples experience of pre tx consultation.
Thanks for your comments,
Paul.
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