First post

[ricmerry]

OK, technically my 2nd. I just posted about Systane Ultra now in a PF vial version shipping to Target and Walgreen.
49 year old male, western Washington State.
I was diagnosed with leukemia in '89 and had a bone marrow transplant in '91 and thought it was so much fun I had another in '98 (cancer free thus far).
My dry eyes began post 2nd transplant. I had some graft versus host disease along with full body irradiation. I'm not sure which to blame it on. I've had little oil in my face since then, I moisturize or crack. I always passed the Schirmer test (tear volume) but speculated (seems like that's as good as it gets with this issue sometimes) I didn't have the normal oils in my tears. I had punctual plugs top and bottom years ago the bottom ones always ended up coming out so I finally had them cauterized. I've carried a handkerchief daily ever since to blot the tears running down my cheeks. It seemed I was generally having poor vision looking through mucus strands.
About a month ago my eyes suddenly started getting really bad. I can't even remember how this episode started but I've seen the doctor several times, have tried LOTS of different OTC drops, been on Lotamax (sp?) and now Restasis for 27 days and things seem like they are getting better. I tried putting drops in while driving one day (I highly don't recommend this) and bopped myself in the right eye with the bottle on a Friday. By Monday I was for all intents and purposes blind and my eye hurt open or closed. When I finally got in ti see the doctor that afternoon I was taking pain pills. Apparently I had scratched my eye and between my diabetes (presumably from the transplants) and the steroid drops it wasn't healing. The doc scraped off the dead cells and put a clear contact on my eye, instant relief!
I've had dry mouth most of this time as well so winder if I may have Sjogren's syndrome. Again, back to speculation. Goggles have been my saving grace most of the time. I've bought about 8 pair of them trying to see what works best. So far Speedo swim goggles I've melted some holes in for ventilation work best. I'm taking Omega oil caps, bought Tranquileyes and am up to whatever else might work. Serum drops are next on my list if the Restasis doesn't do it

[msienkiewicz]

Ricmerry,

You may like Walmart paintball goggles. They are only $6 or so, but they work great, and you wouldn't have to put ventilation holes in them. They also don't look all that bad. I have actually worn them out.

Just a thought...

You have been through so much.
Best wishes to you...

Melissa

[ricmerry]

Thanks Melissa, that's a good tip.
I often struggle between comfort and ego when going into public.
Given enough discomfort, I don't care what other people think.
-Ric

[Rebecca Petris]

Ricmerry, greetings from Poulsbo.

Serum drops sound like a good idea for you. Also look into Boston sclerals. GVHD is one of the conditions most likely to be benefitted by them.

[ricmerry]

Thanks for the welcome Rebecca. I lived in Poulsbo briefly in '89, Mount Vernon now.
I've certainly heard about serum drops but don't know what the next step would be to pursue them. This and my overall DE treatment sounds like Déjà Vu from my transplant days; I will need to do most of the research and footwork concerning my own treatment. I'm convinced one reason I'm still alive is that I was my own advocate and didn't fall into the roll of "passive patient".
DET has already been a great resource for me and I've not even searched for serum drop info. Thank you.
I've done a bit of research into Boston sclerals and am really hoping I don't have to go to those. That being said, photography is my passion and about the only creative skill I have. I sat with my eyes closed and in pain for just one day and got to really think about the gift of site. I'm bringing a full serving of willingness to the table to do whatever I need to do.
We're leaving for eastern WA today to go camping. This will be the 1st time I've been on the dryer side of the state since things started getting really bad. Wish me luck.
-Ric

[Lucy]

Hi Ric-
You are like a fresh breeze here! I first saw your post before anyone had posted to you. I could not wrap my brain around your situation then to make any sense. Since there are a couple of posts now, I can maybe say "hello" and you'll be a welcome addition to DET.

I'm here from Lasik 10 years ago which started all my eye stuff, then 3 years ago was diagnosed with Sjogrens and probably had that for 7 years by then. Quite a few of us got here (including Rebecca who started DEZ) by way of Lasik or PRK. In the early days of RS, doctors denied that surgery caused dry eyes. A few years ago, it began showing up on OTC eyedrop bottles as a fix for "Lasik" dry eye, and other reasons.

When I was first dealing with this, it was really hard to find another person with the same problem. Didn't matter how we got it especially, but we didn't really know what to do. One of my very first contacts was with a man named Terry who had the same thing you did and had a bone marrow transplant. A fellow Lasik dry eye guy, John L. connected us and we traded info and treatments. At first, I thought you might be Terry, but I've lost track of him. Last i knew, he was doing better.

Things are so much better now, and DEZ is wonderful for helping out or just venting. Many things available that were not 10 years ago. Most importantly is the amount of information we have incorporated here. Drs still do not like to treat dry eye.

I do hope you and your family/friends do have a great camping trip. I go to Vegas every couple of years, dry eyes or not. My first (and worst time) was 6 weeks after my surgery. My eyes had not really started on fire yet. Lucy

[Stanza]

I watched someone with GVHD at the same office I went for a scleral fitting come out wtih the biggest smile on her face, it was lovely. She could hardly open her right eye it was so bad but sclerals looked like they were going to give her a fab solution.

[ricmerry]

Thanks for the welcome Lucy. We just got back from camping and I did pretty well considering eye hygiene is a bit more difficult, campfires make smoke and it was really windy one day.
Today marks 1 month on Restasis and after reading some posts here I've decided to give Dwell drops a second chance.
Although I've been hoping Restasis works as "the easier softer way" I've just realized that if it does that probably means I have Sjogrens, I've done little research into that yet but my dentist did comment on how dry my mouth was and it sure is when I wake up in the morning.
Anyway, great to find such a wealth of experience in one place.
-Ric