1 Year + 132 days

Hello All! It's once again time of an update. I am not sure who is still reading this but I still feel the need to post something for posterity’s sake. Actually, there is some interesting information to report. We finally got approval by my insurance to get “fitted” for a set of “prosthetic replacement of the

ocular surface ecosystem” (PROSE) contacts. As you might expect these are not your typical contacts. The special component is that these contacts have additional spacing (a bigger cup) to hold liquid. I guess I should go back for those of you that may not know, one of the side effects from my transplant is that I no longer produce tears (dry eyes) additionally, as part of GVHD, I continue to have scarring on the inner lids of my eye (scratching, like a burlap sack). Anyway, we got the OK form the insurance and jumped on the opportunity to get fitted. This treatment is very rare and offered in only a few cities, fortunately one of the locations is the UIC hospital in Chicago. Being that I have family there I went with that location. Just to give a point of reference here as I always refer to Chicago as an “old” city, the true name of the building that I had my treatment at was the UIC Ear and Eye Infirmary (built in 1819, now that's old).

Now about the contacts, like I said they are special.  They hold additional liquid for my eye and help keep the scratching down. To accomplish this feat the contacts must be a PERFICT fit, if not, the liquid would just spill out. The fit makes it more like a suction cup stuck to your eye than a contact, in fact, it takes a special plunger tool to remove them. That interestingly enough brings me to the other very “special” part of these contacts; the “insertion” process.  Like I said they are a big cup that holds the liquid for my eye. Well I need to get this cup to my eye without spilling is contents. Not any easy task, even when you get it on and you don't spill the liquid out you need to be sure to not get any air bubbles in. Trust me, seeing through a bubble is an interesting experience, one that you don't what to experience if you can help it. The other hurdle is the fact that the PROSE are hard contacts and 3x times as big as regular ones. That's right 3x times bigger, this all may not seem like much for you non-contact wearers out maybe you can relate. So needless to say it has been a challenge but I am getting better at the whole process every day. At this time, I can only wear them for about 6 hours at a time, and need to build up a tolerance of them, but from what I can tell, this is going to be worth it. I should note that I will still need to put drops in my eyes every now and then.  It will depend on the environment as the PROSE only keep the inside of the eye wet, the outer layer is still going to get dry. One last thing, I want to say THANK YOU to Tracy F. for doing the research and finding this treatment for me, I am not sure I would have gotten this far without her. OK enough about the eye for now; I will keep you posted on any progress.

This photo shows the PROSE contact and a comparison of its case and that of a regular hard contact case.

There is one other topic that I should touch on. I will not go into details here and now but it looks like I have another post-transplant issue to deal with. It looks like I will be needing hip replacement in the not so distant future. For now, I will just say that I have Avascular Necrosis or Isteonecrosis (click to see Mayo's definition) I will talk/write more about it when treatment gets closer.

Truthfully, things are going OK over all, my body and mind are still working things out but I am feeling better and at least trying to do more every day.

As usual, thanks everyone for your thoughts and well wishes.

Tony