So Far, So Good

Happier Ed!













May 1, 2007. Ed took the Voriconazole oral tablets for 6 months after the fungus came back. He had blood tests regularly to see if his liver could take it. Lucky him, it did. All the fungus is gone (we pray) and Ed has been off the oral tabs for 1 month. Checkup today showed all is clear. We go back monthly as those little Aspergillous spores could still be hiding. We watch daily for any eye irritation or light sensitivity. The vision in that eye is still awful. About 20/200. So, in another month, he'll get to see if a contact lens might help. He is still on the Combigan twice a day just to make sure the pressure in the eye stays low. And today, he got to stop the Voriconazole eye drops. So great because they sting. He's been on them for 9 months!
Ed is a trooper although the loss of vision is an ongoing reason to get down in the dumps. I understand totally. We kept all the vials and pill bottles and here is our photo of a happy Ed now that he is off the Vori. Please send us a prayer. Thanks, Dayna.

November 21 Photo of Ed's Eye

Photo of Ed's eye from November 21. At this point, Ed has been back on the oral Voriconazole and the 1% Voriconazole eye drops for 5 weeks. You can see that the fungus has retreated. The corneal graft appears as an opaque rounded (almost looks like a thick contact lens) on the upper left of the eye.
At this point, he just keeps taking Voriconazole 200 mg twice a day and the eye drops every hour while awake. He gets blood tests monthly to check if the drug is harming his body. We see the eye surgeon every 2 weeks and the infectious disease doctor about every month.
Light sensitivity from the anti-fungal drug keeps Ed from driving at night.
Again, we are so grateful for this medical care and treatment.

October 24 Eye Photo Shows Fungus

October 24 Photo of Ed's Eye
See the yellow fungus reaching down under the corneal graft. The sclera is inflamed. Ed has been taking oral Voriconazole for 1 week when this photo was taken by the eye surgeon. I must say that this photo looks like a dragon's eye from a sci fi movie.
The deep yellow colour of the fungus is really easy to see in this photo. The fungus is not worse from last week when it was discovered that it was growing again, and so we hope that the anti-fungal drug is working. On the bad side, Ed is experiencing eye sensitivity to light again and eye ache sometimes. The vision is blurred in the affected eye, of course, and this probably won't change until Ed is off the anti-fungal drug.
The infectious disease doctor says that the fungus spores probably were 'hiding' in the graft's stitches or in a little bubble of cells under the graft. They will hide in places where the blood supply is poor.
This means several more weeks, or even months, on the Voriconazole drug, as long as Ed's system can handle the side effects.

Oct.24/06 Dr's Visit

Well, we saw two Doctors today. The Infectious Disease Doctor 'R' is so great. We met him before when the fungus in Ed's eye was first diagnosed. Dr. R. explained what choices we have very clearly.
1. If the fungus reacts quickly to the anti-fungal drug which Ed is back on now for one week (Voriconazole), then that is a sign that the fungus can be eliminated completely after about 6 months of the drug.
2. If the fungus reacts slowly over the next month, then probably the better route would be to have more surgery to remove the fungus 'clutch' again as well as any artificial things in the eye on which the fungus can 'hide' from the drug (this would include the artificial lens implanted at the original cataract operation and the corneal graft).
We hope the second route won't be necessary as more Surgery on Ed's poor eye is not wished for!!
Dr. R. said it would be best to continue on the Voriconazole eye drops for a month, while the oral drug is building up in Ed's system.
Ed will have monthly blood tests to see how his liver is dealing with the drug. That's it, except that the eye pressure was fine and Ed's left eye has about 20/80 vision in it right now. And, Dr. R. said Ed could drive a few hours after taking the anti-fungal drug, when it's side effects have worn off.
Oh, The other doctor, the eye surgeon specialist, was encouraged that the fungus did not look worse. This is probably a sign that the drug is working. The eye specialist wants to see us again next week.
We are encouraged as this very expensive drug will be covered by the provincial pharmacare plan (we hope). We are grateful!

More on October 17th

I forgot to say that Ed first started on the Voriconazole tablets on July 17th. So, he was only on them for 4 weeks; until August 16. However, we all thought that was long enough. Guess not.
Also, the specialist took Ed OFF the Prednisolone drops and the Combigan drops. So, only one kind of drop to worry about; although, right now; it is every hour.
We go back to the specialist in one week and also to the same infectious disease specialist. Wonderful to have these medical specialists close by, relatively! It takes us about 2 hours to get there, including the ferry ride.
Not complaining; just reporting.
Ed's eye looks different now. Like a transparent flat bubble is floating over the iris area. That is the corneal graft. His eye is bigger than the other; that is for sure. Maybe it will always be?
That's all for now, folks.

October 17 - Good News and Bad News

October 17,2006. We saw the specialist today who took out all of the stitches from Ed's eye. Removing the stitches 'released' the warp of the cornea and Ed could see much better almost immediately. BUT, the bad news is that the specialist says that the dreaded fungus has returned!! We were warned that it might, but we didn't believe it! Ed's eye is reddened again, not calm like it was at the last appointment on September 12th.

(Photo of Ed's eye taken on Oct.24 after one week of Voriconazole oral 200 mg and hourly Voriconazole eye drops).

We thought that the redness was due to using the wrong kind of caulking (outdoor used indoors) that Ed used while working in his workshop. Guess not. Ed doesn't have pain; just an ache that comes and goes. He was saying that his eyesight seemed a bit worse than it was from that eye - so I guess that was an indicator. The specialist says that the fungus is growing under the 'flap' which we are guessing is the corneal graft? But could be the conjectival flap. We were too shocked to ask many questions.

So, Ed is now back on the oral Voriconazole anti fungal tabs; twice a day. He had finished taking them on August 15, almost two months ago. Then, after a month's worth of checkups, we thought that the fungus was dead!
But no, it was only waiting in the wings!! One little spore hiding and waiting to grow again!!

The oral Voriconazole blurs his vision for a few hours after taking them, and they make him really tired. He hates that, but no choice in this matter. Ed is also back on the Voriconazole eye drops every hour except between midnight and 6 am or when he is asleep. Luckily, we have some coverage for these very expensive drugs.

A Long Recovery

October 6, 2006. Looks like this will be a long recovery from this big surgery of removing the diseased parts of the eye and the corneal graft. Ed is not having pain and the fungus has not returned. He sees the specialist every month right now. Last visit was Sept. 12. Ed is sometimes 'down' about the loss of vision in the affected eye. His vision has improved a little, but he still cannot see 5 feet across the room. All is blurry. Funny thing, though, he can see clearly through the binoculars. We think that the corneal patch is blurring everything due to the uneveness of the patch and the pull of the stitches. That's what the specialist said was causing it. Ed has to wait until the eye is really healed before any more surgery is done to correct the vision. First, the stitches must come out; a few at a time.
Ed is driving, but only in the daytime for long drives. The bright lights at night are difficult. He's back curling, though, and we'll see what one eye sight will do to improve his game!

Finished Oral Voraconazole

August 15, Tuesday. We went to the 'big city' and saw the specialists. Both specialists were happy because Ed's eye was calm; no inflammation. However, now that the oral Voriconazole is ended, we will wait and see if the fungus returns or not. Return of the fungus? We believe it is gone.
Just in case, the one specialist asked Ed to stay on the Voriconazole eye drops for another 2 weeks. The specialist is away for a week. We see him again on Aug.28 to check Ed's eye. The specialist says that Ed will feel pain and his eye will get red if the fungus starts to return. The second specialist said that he thinks Ed's immune system will take care of any few spores which may be left. The second specialist (retinal specialist) was reading the surgical report and he said that Ed was fortunate to have kept his eye. There was diseased tissue even close to the retinal wall. We want to have a copy of the surgical report and will ask next time.
The second specialist said the eye is saved but the vision may be blurry for always. The first specialist (who did the surgery) said that after several months, after the stitches come out, there are options to improve the vision such as glasses, contacts, perhaps even a total corneal transplant.
Cross that bridge when we come to it.
So, Ed is still on Voraconazole eye drops, Prednisolone eye drops and Combigan eye drops (stabilize eye pressure).
And that's our update. Ed's energy is increasing all the time. He now can drive and he feels free again!! We are going to buy him a really good eye shield (face shield) for any outdoor or wood work.
He can go swimming now, too, so there will be a swim before summer is over.

Eye Check is Good

On August 1st, the specialist says that Ed's eye is 'calm' ; meaning no sign of fungus growth. Which is good. However, the big test comes when he goes off of the anti fungal oral pill and eyedrops after August 15th. Then, he will have weekly eye exams to check for 'blurriness' in the anterior chamber of the eye for 6 weeks.

Increase in blurriness in the Slit Lamp exam would probably mean that the fungus is growing again. The Infection Control doctor was great in explaining all of this to us. Ed's blood tests show that, so far, the anti fungal 'super drug' is not harming his liver function. He still needs a blood test every week to monitor that for two more weeks.

Then, we will know for sure that the fungus will not take hold again and no more treatment for it will be needed. Personally, I think it is a very dead fungus already!!!

Ed has slight improvements in vision each day but still can only see to count fingers at about 2 feet distance. This should improve more over time.

So, we will be going for weekly check-ups after the week of August 15th (Aug. 15th we are back at the Eye Care Centre to see 2 specialists to check both the front and back sections of the eye). The other good news is that the Voriconazole eye drops are now reduced to every 2 hours. Ed still gets two other drops, anti-glaucoma drop (Combigan) one twice a day, and the Prednisilone drop still at four times a day. The antibiotic drop was stopped.

The 'every 2 hour' Voriconazole eye drops will be over on Aug. 15th. It has been 2 1/2 weeks of hourly eye drops!! Ed will be able to put drops in his own eye soon, once he is healed more.

All the specialists are kind, helpful and informative. This has really helped on this journey!