Hep C Discussion Forum

ilovelife · Senior Member

RE: A long day in hospital.........................

medusa · Guru

Hi ilovelife, I hope your appointment with the eye doctor went well, and that you do not have any more trouble with your eyes on tx, it sounds like you have been through enough already............I would hate to have surgery on my eyes. The problem I have is not cataracts, but damage to the optic nerve and back of the retina, I think. I will find out more next Tuesday as I have an emergency appointment at another hospital for another examination. I'm glad that it is so soon and I won't have to cancel my trip to England in early December. Early on in tx, when I developed the eye problem, I nearly had tx stopped because of it, and remember thinking at the time that I would prefer to lose part of my sight, than the use of my liver! Glasses make no difference to me. I have reading glasses, and can read with the left eye, which is only slightly effected, but not with the right. It is like a grey veil over that eye, and a page of writing looks like a black blur on a grey page. My eyes are also still very sensitive to light. I did manage to drive to the nearest village this week, with my daughter watching out for me on the right hand side! I don't feel so faint now, and feel the drugs are wearing off a bit. It felt good to be able to do something normal again.
Have you stopped work now? You don't have too long to go, keep counting down the weeks, and take it easy.......... Love Annie xxxxx

ilovelife · Senior Member

Hey Annie, I'm glad you are starting to feel better, although the arthritis and the eye problems are a concern. I have had cataract surgery in each eye where they removed my natural lens, and implanted synthetic ones...The right eye I had done in 1995, and the left was done in Feb of 2008. I was born with this genetic defect which caused these cataracts. My first eye surgery was done when I was 35, the doc at the time said I was his youngest patient ever, as cataracts don't tend to flare up until you get a little older. I had the floaters too, it was awful, sometimes I could see out of the eye, sometimes, I couldnt. And forget about night driving, that was in essence blinding me when there were oncoming headlights. I was wondering if they would let me do treatment because of this, but they said not an issue. I do have an eye doc appointment next Tuesday just to be sure my eyes are still healthy. The floaters I had with the cataracts were kind of filmy white, hard to describe. I have experienced seeing little black dots float around since being on tx, hence the eye doc appointment this coming week.
Elizabeth, if you have cataracts, no prescription glasses will help this. Cataracts are a break down of protein in your eye, hence the floaters in your lens. To tell you the truth, not sure if you can get cataracts elsewhere than the eye lens itself, but in my experience, I couldn't see out of that eye if there was a floater, didn't matter if I had glasses on or not. I actually see quite well now, although not 100%, since they implanted these synthetic lenses in my eyes. I have a video of my first eye surgery, which is why it took me over 10 years to get the courage to have the other eye done. Things sure changed in those years...The first eye, they froze it with a needle, yikes, he says: ok now don't move your eye whatever you do while I stick this needle in your eye to freeze it. The next operation, no needles, just drops used to do the freezing. That made a huge difference.
Anyway, I've been rambling. A little more energy than usual, I think it's because I'm taking just a touch less interferon than I'm used to because of the recall on my regular dose. I will be back to my regular dose in 4 weeks.
Bigs hugs and lots of love everyone.

medusa · Guru

Hi Jill, Your post just appeared as I was typing my last reply. I hope you have got over your cold now, and are feeling really elated to know that you are UNDETECTABLE!
I have been feeling less faint the last few days, so think my RBC's are starting to go up a bit, hooray! Good luck with box 3, you'll soon be half-way there!
Love Annie xxxxx smile

medusa · Guru

Hi Dori, Thanks for the congratulations, I am indeed happy and relieved to be told that the tx has probably worked, and that all my other internal organs are in good health, it makes the ordeal of the past year seem worthwhile.
I do think the arthritis and eye-problem are tx related, as I didn't have these prior to tx, and they both came on quite severely in the first month or two of treatment. I may have developed them anyway with age, and certainly a year's forced inactivity hasn't done my back any good! I think being able to get some exercise will help a lot with that.
As for my eyes, I need to have more investigations done, so can only speculate. From what I have found out so far from doctors and research papers, and from my symptoms, I would guess that I have some damage to the optic nerve and retina. As I have now stopped taking the interferon, this shouldn't get any worse, or necessitate an operation, on the other hand, I don't think it will improve either. Luckily my left eye is only slightly effected, I can still read and do artwork, which is very important for me............. I will be content if it gets no worse. There's no such thing as a free lunch,as they say!
I hope that you are feeling good, and more recovered from tx with each day that passes. Keep strong and positive!
Hi Elizabeth, The same to you as well! You don't have too long to endure now, keep that finishing post in sight, each day gets you a little closer..........Bon Courage!
Love Annie xxxxx

Cinnamon Girl · Guru

Hi Annie, that certainly was a long day in hospital!! Well, you have quite a lot of good news there but I`m so sorry to hear about the problems with your eyes and back. That arthritis must be so painful. Hope the visits to the relevant specialists go well.

Glad you`re not feeling so faint now, and I hope you enjoy that trip to England to see your parents. Let`s hope that very soon your energy will start to rise and that the brain fog starts clearing.

Love and all best wishes, Jill xxx

virginiap · Member

Annie,

Congratulations on completing the treatment! It's wonderful to know the French hospitals are so thorough and great news that your fibroscan results were so wonderful and that the doctor seems confident you've beaten the nasty virus! Also terrific news that your heart, lungs and kidneys are in good condition with no negative effects!

Sorry to hear about the eye and spine problems. Do they think the advancement of the arthritis in your spine had anything to do with the interferon treatment, or is this something separate? Are there exercises they've given you or other treatments yet for your back? Did they give you eye drops to help clear up the floaters? I don't know much about either of these things.. the back/spine or the eye floaters. After doing only a 3rd of the tx program, I developed dry eye but I'm not even sure it's associated with the tx at all. They gave me restasis which is expensive and I'm not sure it's doing any good.

I have friends who have experienced floaters (age related, not tx related), but not as extensively as you're talking about.... I bet that's tough to deal with and I hope they come up with a solution to clear it up!

It takes a while for the meds to get out of your system and the sx seem to continue for a while and I wouldn't even venture to guess how long for those who went through the whole treatment. I wish you all the best and for a return of your energy level .... a stronger spine and healed eye floaters. .... plus, of course, the virus never returning! Could the floaters have something to do with the possibilty of a cataract? Just wondering... though I do read that you said the eye doctor couldn't find any specific problems so I guess not...

Hang in there and take care of yourself! I wish you more and more energy as every day passes!

xxoo
Dori

bethland · Senior Member

Hi Annie
yes its very Bob Dylan... "blood on the tracks" that walk i love it ..
you made me laugh when you said that about trying not to get on the wrong train

.....sounds like something i would do *giggle giggle*.....

My eyes are not so bad with the "floaters" tho i wish i had mentioned it to the nurse on Tuesday at the hos ..cause they have gone blurry since tx ..and i agree i think i should get tested and maybe wear glasses...
i am sorry everything looks grey i worry about permanent damage from this tx lately.as i get closer to finishing i wonder what will become of me ...and all of us that went here ..
Dee has been quiet i hope she is feeling comfortable and happy as she can be ....

Love Eliabeth xx

-- Edited by bethland on Thursday 4th of November 2010 07:48:23 AM

medusa · Guru

Hi Elizabeth, I've been looking up research on the eye problems associated with pegylated interferon, and it seems to be a more common sx than I thought. It is a good idea to let your doctor/ hospital know about this asap. and to get a thorough eye test done including the retina, especially if you also have a large number of 'floaters', and other symptoms like light sensitivity, flashes of light that dazzle the eyes and migraines.
I've booked a train ticket on the Eurostar to visit my parents in England for a fortnight going the 1st December. I'm hoping I will have a bit of energy by then! Even if I'm feeling no better, it doesn't take too much effort to sit on a train, and I will carry no more than a change of clothes. It will feel so good to do something independent again! I'll try not to get on the wrong train with the mental confusion and brain fog.
I've still got the same old sx, but think my RBC's have gone up a bit, as I don't feel so faint all the time.
I hope you are feeling alright and adding to your collection of rusty bolts from the old railway line............that sounds a beautiful, relaxing walk to do each day.........
Love Annie xxxxx

bethland · Senior Member

Hi Annie
Well that is a huge day ...i am just so pleased to hear that the doc had some promising news and it great that all your organs have come out healthy from the tx ..how exciting ...

On the eyes yeah my eyes have been very blurry lately and i also have floating things like you mentioned tho i dont notice them all the time ..

I hope you are feeling more energetic and on the mend from the sx's ...its really not nuch fun ...
but you made it ......
Do you have a treat planned for yourself on finishing tx ?

love Elizabeth

medusa · Guru

I had my post tx appointment at the hospital today, and was expecting the same 4 to 5 hours of tests, scans and x-rays I had just before starting tx. French hospitals are nothing if not thorough! I got there at 8am, and didn't escape until 6.30pm.
Good news first, the fibroscan test showed a big drop in the level of liver damage from 3 to 1.5! The doctor also seemed suprisingly confident that I have beaten the virus, He estimates the chance of it returning in the next six months at no more than 2 percent, which really took me by suprise as I am genotype 1a, and all the statistics I have seen give figures of between 18 to 30 percent possibility of the virus returning. Naturally I was extremely pleased to hear this! My heart, lungs, kidneys are all in good condition.
The bad news is that I have quite serious damage to my spine and eyes almost certainly caused by the interferon. I had about another 20 x-rays done of my spine, and individual vertebrae, as a follow-up to those done last March, when my back first got really painful, and those done pre-tx. 18 months ago I had various old injuries to my spine, but no signs of arthritis. Now I have severe arthritis, and the top of my spine has curved over a lot. All my other bones and joints are fine.
The eye damage is not painful, but more worrying as I know less about it. Since early on in the tx, I have had a grey 'veil' over my right eye, and some loss of peripheral vision. I have the same in the left eye, but much less severe. I was sent to an eye specialist early on in the tx, but she couldn't find anything in particular wrong. Today I saw for the first time the composition of the 'veil' in full detail, and it is made up of what are commonly called 'floaters', like minuscule black spots/ fibres/ fine hairs/ pieces of cobweb, which move around as I move my eyes. They are common, and are actually shadows cast by tiny fragments floating in or on the retina of the eye. Many people, especially as they get older, have one or two, but I have hundreds in the left eye, and what look like thousands in the right! I can still see, but everything is grey. As yet I don't know much more, and am waiting for an appointment for another day in hospital for further eye examinations, a brain scan, and also to see another back specialist. If the damage gets no worse, now I have stopped taking the interferon, I will be well happy! Has anyone else had this? I believe it is quite rare.
Love Annie xxxxx

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