Announcement

Collapse
No announcement yet.

New Member with GVHD

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New Member with GVHD

    Hello,

    I first want to say how wonderful it is that this web site exists. It is so hard to explain to people (family and friends) how miserable dry eye really is. Thank you.

    I am a Leukemia (AML) survivor, 1 year post transplant I have been battlling dry eye now for about 4 months. I have tried most all the drops on the market but now am sticking with preservative free ones. I am also on Restasis. I have tried the plugs which did not work. My doctor suggested I try cauterization of the ducts. After being assured this was reversable I went ahead and had it done. I noticed it allowed me to retain about 20% more tears than what i had. but going from practically nothing, it still wasn't much help. As you can imagine I am in misery. Going from such a battle to beat Leukemia this should be a minor bump in the road but it is not. My oncologist thought that the Boston foundation for sight might be of some help. I have spoken with Bill, watched all the videos on the net, and have faxed over my medical records. I just want to make sure before I spend all the money, that I have exhausted all my resources. My eye doctor seems to think I should give the Restasis some more time to work. He has said that it could take up to 6 months to work. I just don't think I can wait that long. I feel health enough to go back to work, but my eyes are holding me back.

    Please, any advise you all would have would really help. I am very close to trying the Boston Lenses but It will be a very expensive procedure. I do have good insurance, but airfare, food and lodging for up to 2 weeks could really add up. I have tried looking for info on you sight but I am limited on the amount of time spent on the computer because it is painful on the eyes!

    Thank you for all your help. This is a great service to all who suffer from this very serious problem.

    Mark

  • #2
    WOW!!

    I just want to thank everyone for all the great advise!

    Comment


    • #3
      Hi Mark and welcome. Sorry you didn't get replies before this but a lot of members visit only periodically and sometimes it takes a few days for someone who is in a situation similar to you to see the post.

      GVHD and Stevens Johnson Syndrome are among the conditions that BSLs are most likely to be able to help. But I sure appreciate the practical issues of cost and inconvenience.

      Have you tried autologous serum drops?

      What about moisture chamber eyewear?
      Rebecca Petris
      The Dry Eye Foundation
      dryeyefoundation.org
      800-484-0244

      Comment


      • #4
        I apologize for my sarcasm. This whole dry eye thing has really frustrated me. Yes I have tried the goggles and the autologous serum drops. Like most drops they only offer very temporary relief. I think that I have tried most things mentioned on this sight. I guess BFS is the way to go. Sorry again for being a smart A$$. It is nice to know that people like us, have a web site like this to visit.

        Mark

        Comment


        • #5
          Don't mention it Mark... all of us here can surely sympathize with the frustration that comes with this condition. What often happens when we get a new member with one of the less common dry eye causes is... most of us wait to see if someone with the same condition posts before we jump in with well meaning but possibly less directly relevant suggestions.

          Although we don't have a lot of GVHD folks here on the board (yet... ) I've personally had the pleasure of speaking with several of them who are successful scleral wearers. As a BSL wearer myself, personally I can't speak highly enough of the facility and the lenses.
          Rebecca Petris
          The Dry Eye Foundation
          dryeyefoundation.org
          800-484-0244

          Comment


          • #6
            Hi Mark,

            I think one of the reasons for a delay in response from anyone was because not too many of us know what GVHD is. Although there are certainly other people on this site who are dealing with that, it's not the most common ailment here. Also, very often on here, we get so used to using the acronym for something, we assume that everyone knows what it stands for. I had to look up GVHD just now to find out what it is. Lot's of people do that on here (like "DEZ" is a common one...that's "Dry Eye Zone") and it kind of makes it a bit confusing for anyone reading the posts.

            Anyway, I can't be of much help for your specific problem but I do just want to say that I think it's fantastic that you beat cancer. I wish you all the best of good health going forward and I hope that you can find something to help your eyes (I hope I can, too!!).

            All the best,
            NYer

            Comment

            Working...
            X