Just a quick note to those folks reading this blog for the first time. I have foregone the usual blog format of the most recent posts being at the top of the page and instead have chosen to build the blog in chronological order (top-down), so that it is easier to read...

1/22/09 - Opening Statement

I thought it would be helpful to give a little background on my situation before getting into the details of my day to day experience with the surgery.

I was diagnosed with Keratoconus (my next entry will deal with the explanation of the disease and some resources for finding out more about the disease) in both eyes my senior year in high school in 1995 by Dr. Vivian Rosenthal in Boca Ration, FL.

At first, I did not notice a material difference from the already generally poor vision that I had from my combination of near-sightedness and stigmatism. Gradually, however, my disease progressed in most of the normal ways that one would consider for Keratoconus as the corneas in both of my eyes became gradually steeper (hopefully, I will be able to get copies of the corneal topographies from my doctor to post). Over the years, the deterioration in my left eye has been more consistent than in my right eye and consequently, I am having the surgery performed on my left eye (at this point it is doing little more for me than depth perception).

I moved from Dr.’s in Florida, whom I saw on trips home from college to Dr.’s in New York City and eventually in Boston, where I now live. As a side note, I have been seeing Dr. Watanabe of the New England Eye in Boston for about 7 years now and he and his team have been absolutely fabulous at fitting me with lenses and holding off the need for my surgery until this point.

Over the years, I started out wearing soft lenses and glasses and then moved to hard RGP (rigid gas permeable) lenses as the curvature of my eye made it necessary (because of the warping of the cornea in Keratoconus, you need to almost create a false surface for your eye). For the past few years, I have been wearing “piggy-back” lenses, which is a soft lens underneath (which almost acts like a bandage) and a hard RGP lens on top to deal with the curvature issues. (Thank god for the new soft lenses that have better wetability as it was a nightmare when my eyes use to dry out!).

As many people who have Keratoconus can attest, although, I have been corrected with lenses, I really don’t see that well, even with my “piggy-back” system. I basically don’t see anything out of my left eye and the correction is really only to give me depth perception. In my “good” right eye, one could claim that I see 20/60 or 20/80 corrected, but it is a very different 20/60/80 than for a normal person, as I see much blurrier and my brain has learned to “interpret” those images. (If you want, it is fun to check out the pictures of how a Keratoconic eye sees in the link in my next post…).

I am scheduled this coming Thursday, January 29th for surgery on my left eye and if all goes well, hopefully, I can have my right eye done after a full and successful recovery on my left eye (usually this would be about a year to a year and a half afterwards).

Wish me luck!

1/22/09 - Keratoconus and Corneal Transplant Info

My best description of Keratoconus is that it is a degenerative disease that results in a warping of the cornea (outer layer or lens of the eye) such that it become conical shaped (basically changing from the spherical shape of a half of a basketball to the conical shape of a road cone). Usually, Keratoconus can be treated via contact lenses, but in about 10-20% of cases, the degeneration is bad enough that a Corneal Transplant is needed. In short, a Corneal Transplant is just what it sounds like, basically, a Dr. removes the outer layer of your cornea and replaces it with a donor cornea (usually held in place via stitches).

The following are a bunch of links that I think are good for people that want to learn more about Keratoconus and Corneal Transplants:

First, some fun, this is how people with Keratoconus see – I basically have ALL of these symptoms, fun huh? -

The best general resource I have found is Wikipedia (of course):

Keratoconus entry -
Corneal Transplant entry -

There are also a ton of great blogs, written by people that have had transplants and the following is one of my favorites -

Basically, one of the reason’s that I wanted to write this blog is that I have found that many of the diarys/blogs like the one above are a bit dated and I thought people might want a more current view of events.

You can basically use the above links to navigate to all kinds of great stuff about the disease and the treatments, but it is also worth mentioning a great non-profit organization called The National Keratoconus Foundation ( that supports people with the disease

1/22/09 -1-Week Prior to Surgery

Today is 1-week prior to surgery and I am started to get excited about the prospect of being able to see again! I will admit that I am a bit nervous about the surgery, but I am like 80% excited and 20% nervous, I think…

This past week, I had a physical with my primary care physician, which went well (phew!). I am basically healthy as a horse, other than being a little overweight, which results in blood pressure which is, to quote my Dr., “in the normal range, but on the high end of normal…”

I have been instructed to begin to take drops 3 days before surgery – Zymar (anti-biotic) 4 times per day and Xibrom (anti-inflammatory) 2 times per day.

One day before the surgery, I am not supposed to eat or drink anything (this is because of the anesthesia) and my Dr. told me to stop taking anything like Tylenol a week or so before as it thins out the blood.

I am supposed to head to the surgery center (I can’t believe that I am having a transplant and I am not going to a hospital) on Thursday after receiving a phone call the day before to give me the time (one would think that this would be more precisely scheduled) and then I am going to be at the surgery center for 4 hours.

I am scheduled to come into the office for an appointment the next day to see how it went and then I have appointments on a weekly and monthly basis afterwards – this is to check for rejection and other issues and sometimes to adjust the stitches to improve my vision.

Oh and they told me to wear comfortable clothes the day of the surgery as they are just putting a gown over my clothes for the procedure – anyone have any suggestions?

1/24/09 - 10:19 AM - Sick?

I got home last night after a long week of work and felt like I was coming down with a cold. I took a bunch of vitamin C and Echinacea and washed it down with and Airborne (basically my pre-sickness routine) which usually helps - not sure if this is psychological or not? I am a little nervous as one of the comments in my surgery materials was that surgery may be postponed due to sickness in the week leading up to surgery. I am feeling a lot better this morning, however, as my wife Caroline let me sleep in, instead of getting up at 6 AM to feed my son Bradley - I just fed him stage 2 bananas, peaches and raspberries and he is playing with his turtle....

1/26/09 - 9:00 PM - First Day of Drops

Today was my first day of putting drops in my eyes. As I mentioned before, I have one set of drops that I use twice a day and another that is four times a day.

I spoke to the surgical coordinator today. She advised that twice a day, when I am putting in two sets of drops, I wait a few minutes in-between drops so my eye has time to flush out the fluid. Also, I asked about putting in the drops when my lenses are in my eye, and apparently that is OK.

The only issue I had with the drops today is that my eye aches a bit toward the end of the day - I need to remember to ask the Dr. or coordinator about this the next time I speak to them.

A few other interesting tidbits:

1. On a tip from a family friend, I asked today about getting a cornea that is my age - i.e since I am 32, I don't want a cornea that is 60, since these things tend to wear out over time. The surgical coordinator let me know that my Dr. is very particular about these things (good thing I researched and found someone who is really good) and he screens out older corneas, etc.

2. I also found out that my scheduled time for surgery on Thursday is 1:15 PM, but that they are still not sure and will call me the day before - how are they still not sure?

I have also found that as I try to tie up loose ends at work prior to my surgery, new things keep popping up - why is it that you always get busy right before you need to leave for vacation/surgery, etc.?

On a side note, my wife made a fabulous dinner tonight of Cajun chicken and rice - nice!

Oh and also, over the course of the past several years, I did a bunch of research to find some of the best Dr.'s for corneal transplants, and two names kept coming up (both in Boston interestingly) - Dr. Peter Rapoza and Dr. Michael Raizman.

I saw both folks over the course of the past year or so and ended up picking Dr. Rapoza at Ophthalmic Consultants of Boston to do my surgery. Both seemed great, but I seemed to have a little better rapport with Dr. Rapoza. In an interesting turn of events, I noticed when I was at the office last time that Dr. Raizman actually transferred to the OCB practice - kind of cool...

In any event, only a couple of days left to go...

1/28/09 – 9:00 AM – Day before the Surgery

Today is the day before the surgery and my excitement is still palpable, although, my nervousness has increased a bit more.

I made a mistake last night and re-read some of the accounts of people’s experiences with transplants – some are pretty horrific and some are amazing, but re-reading them amped up my nervousness level. I keep telling myself that I need to remain as positive as possible; as I am a big believer that attitude is a huge part of success and recovery in these types of situations.

For those of you that are interested in reading some of what I am talking about and potentially dealing with similar issues, there is a good site that has a great message board -

My mother is coming in today, to take care of my son Bradley (7 months old and the best thing in the whole world), while I am in surgery tomorrow – my wife Caroline is coming with me to the surgery and driving me home afterwards.

One more day to go…

1/29/09 - 9:30 AM - Day of Surgery

Today is the big day!

Caroline spoke to the surgical coordinator yesterday and she told us that we needed to be at the surgery center at 11:45 AM - great to have an actual time!

I was instructed that I could not eat anything after midnight, but that I could have clear liquids (which includes water, black coffee, tea, etc.) before 9:30 AM - how is black coffee a clear liquid? In any event, I was happy as I drink a lot of caffeine and it is nice not to have a headache going into surgery...

I also decided upon my wardrobe, which includes my lucky jeans (Lucky Brand Jeans and "lucky" jeans), my lucky T-shirt (of a friends band) and sneakers (for comfort).

I am also wearing my good luck charm, which I refer to as my "Stone Power", which is the Hebrew letter Chai on a chain around my neck (I am Jewish) - oh and I am also wearing my lucky Celtics rubber bracelet (I am a Celtics Fan) - which is a Lance Armstrong Style LiveStrong bracelet, but green for the Celtics you think I am covered?

Between myself and my family (Jewish) and my wife and her family (Catholic) saying a few prayers, hopefully, we are covered on that front as well - my mom did tell me that our Rabbi called to tell us that I was in his prayers (always nice to have a direct line into the big guy...)

The next time I post, I will have a new Cornea!

1/29/09 - 9:25 PM - Post-Surgery Update

I'm sitting at home after surgery, and am frankly amazed at how well everything went...although not without a few bumps...

I showed up at the surgery center at 11:45am, and was escorted in almost immediately. I sat down in a chair and was asked a number of questions to make sure I was who I claimed to be. I guess I passed the test, because they hooked me up to oxygen and an IV. Everyone was very nice and made me feel very comfortable while I was waiting before surgery.

The anesthesiologist came in and gave me something to make me "feel better" - I am assuming it was something like Valium via an IV? He then proceeded to give me a series of injections into my face and eventually into my eye in order to numb the entire area. He asked me a few times if I could feel anything, and I couldn't. They then wheeled me into an operating room and layed me down flat in the chair I was sitting in.

Dr. Rapoza then entered, and told me that they were going to get started. The anesthesiologist then gave me another IV injection which made me feel warm, even more relaxed, and a little more sleepy.

The next part was really surreal. My right eye was closed, but my left eye was held open via some type of device...I don't know what it was. I could see out of my left eye, though it was quite blurry. Dr. Rapoza then proceeded to cut my old cornea out, and lay the new cornea on top of my eye. I was fully awake and talking to the doctors the entire time. When they removed my old cornea, I could not really see anything except light, and very faint shapes. When they put the new cornea on my eye, I could make out a little bit more, although still mostly just blurry.

Dr. Rapoza then proceeded to sew the new cornea into my eye, and let me just tell you, it is pretty weird to see someone stitching up your eye as viewed from that same eye.

On a couple of occasions, Dr. Rapoza asked me to raise my chin, and a few other instructions, but at no time during the operation did I feel any real pain. Near the end, I started to feel a tugging on my eye as he put in one of the stitches, and I asked them if everything was ok. They stopped what they were doing, and gave me some additional numbing drops, and some additional sedation. (I still felt the tugging, but no real pain, and I was calmer from the sedation.)

After the surgery, they wheeled me out of the operating room and into the waiting area. They put a patch and gauze over my eye, sat me up in the chair, and asked me if I wanted anything to eat or drink. Since I hadn't eaten all day, I had a cup of coffee and a banana nut muffin...mmmmm good.

After that they asked my wife Caroline to come in, and gave us some instructions for the night ahead.

One of the things they told us was that if I had anything resembling a severe headache accompanied by vomiting and/or nausea I should call the emergency number, as it could be pressure building up in my eye.

We then left, and I almost immediately started to get a severe headache. I have to say it was one of the worst headaches I've ever had, and I had been given two extra-strength Tylenol, which were supposed to alleviate the pain. Needless to say, we turned the car around and headed back to see Dr. Rapoza.

When I got back to the center, they sat me down and called for a technician. The nurses thought the headache may have been due to low blood sugar because all I had eaten was a muffin and a coffee, so they brought me an apple juice and some crackers... The nurses asked me if I got headaches when I hadn't eaten for some time, and I responded that it almost never happens to me, as I eat pretty regularly. One of the nurses commented that I looked pale. They ended up giving me a percocet for the pain.

A technician came in and tried to get a pressure level on my eye with a hand-held device, but for some reason couldn't get a reading. The nurse thought the difficulty might have been due to the Bacitracin (sp?) in my eye, which is an antibiotic gel-type goo. They then took me upstairs to get a reading on a bigger machine, and the pressure in my eye turned out to be just fine.

While I was upstairs, Dr. Rapoza came to take a look at my eye, and commented that everything looked great. His exact words were, "That's a fine piece of tissue you've got there." He thought the headache might be due to the anesthesia wearing off.

We then proceeded to drive home, and my headache slowly subsided over the next couple of hours. I think the percocet helped a lot.

It is now almost 10pm, and to be honest, I feel really great, all things considered. Although my eye hurts, the bandage is off, and although looking like Igor (how the nurse described my now droopy eye), all in all my eye looks pretty good. (I will post some pictures over the next couple of days, some of which we took tonight.)

My wife Caroline (who is typing what I am saying right now so I don't have to look at the computer screen) got a chance to look at my new cornea through the microscope when Dr. Rapoza re-examined my eye. She commented that what she expected to be a bloody mess actually looked clean and clear, with a tiny thin purple thread stitched around the edges. She was nervous to look, but Dr. Rapoza encouraged her to do so, and she's glad she did. She could see the stitches in the microscope, but can't see them in plain air.

I am about to go to sleep now, and have an appointment tomorrow morning at 9:15am. A very large thank you goes to the 53 year old man who was otherwise in excellent health, who passed away due to a heart attack. This is all I know about the man who donated my new cornea, but I owe him a debt of gratitude. Hopefully I will be able to write a thank you letter to his family to let them know how much his cornea means to me.

I know this sounds strange, and maybe I am crazy, but when I cover up my right eye (the eye with my original cornea) and look out of my transplanted left eye, although the vision is quite blurry, I think it may already be as good as or potentially better than before my transplant... Hopefully this is just day 1 vision, which gets much better over time...

1/30/2009 - 6:45 PM - 1st Day Post Surgery

All I can say today is wow!

My wife Caroline asked me today about how I felt about the surgery the day after relative to my expectations, with 0 being the worst and 100 being the best and I have to say 99! (with the exception of the migraine headache yesterday).

I had my post-op visit this morning and Dr. Rapoza was very pleased with the results. He told me that everything looked great and even asked one of the technicians to come over and admire his work (saying that it is good to look at the stitching in a Keratoconic eye, as the eye is otherwise healthy). Dr. Rapoza also had another great line today, when my wife, having looked into the eye said that the stitching was beautiful and looked like a patchwork quilt, said the Dr. "I don't mean to brag, but the people in medical school used to call me the sewing machine!" - Bravo! Boy am I glad that I decided to go to the guy that that was the toast of his med school class.

He was also very pleased with my vision, saying that most people are "counting fingers" and I was able to see the second line down on the eye chart, albeit still quite blurry. The best way I can describe the vision in my left eye is as if I am looking through a dirty piece of glass (but none of the fun house mirror effects of my previous Keratoconic eye)...

Also, from a pain perspective, I am doing great. My eye hurts a bit (feels almost like I have a scratchy contact lens in it) and the area around my eye hurts a bit (probably from the injections). I still have a mild headache, but I think this is more from my adjustment to the differential in vision. After my appointment today, I came home and slept for 4 hours and it was a good idea, because I am still a bit worn out from the events of yesterday. I am taking Tylenol every 4-6 hours and don't feel like I need anything stronger.

I also noticed that I am a bit light sensitive, but the BIG sunglasses that I received in the Dr.'s office made up for it, just based upon the fun factor alone - I told my wife that I thought I looked like Kayne West...

I was instructed to take 2 sets of drops four times a day (the Antibiotic Zymar and the Steroid PredForte) and one set of drops twice a day (the Anti-Inflammatory Xibrom). This routine goes on for about 2 weeks, at which point I only need to continue to take the Steroid drops (presumably to prevent rejection).

The Dr. also told me to take it easy for awhile, not to lift anything that heavy and to just be careful around the eye (I am already picking up my son Bradley, but just keeping him on my right side, away from the transplanted eye). I am going to heed the advice and just be careful - sleep as much as possible and just rest in general.

It will be interesting to see how things progress and I am REALLY excited to see how my vision improves, but I have been knocking on every piece of wood that I can find, because things have gone so smoothly...

Oh, and thank you to the person that commented on my last blog post about sending a letter of thanks to the family of my transplant donor - I had asked in the Dr.'s office and they told me the same thing - I am definitely going to write a letter to the Eye Bank this week...

More to come, hopefully, I can post some of my pictures shortly...

1/31/09 - 3:20 PM - 2nd Day Post Surgery

Today was a bit of a rougher day than yesterday. My only explanation is that the adrenaline from the day before wore off a bit. When I woke up, I felt quite weak and my eye ached. In addition, when I put drops in my eye, my eye stung from the drops and there has basically been a scratchy feeling in my eye all day.

I actually felt a headache and nausea this morning and got a little worried about rejection, but Caroline looked at my eye and it looked quite clear. I have been continuing to put the drops in regularly and am monitoring the look and feel of my eye closely.

I took a nap from about noon to 2:30 PM and afterwards I felt quite a bit better. My eye still hurts, but I felt less weak. I have to remember that I am still recovering from surgery and need to take it easy.

The other interesting thing is that although my eye looks more bloodshot than the day before, it actually looks a little more normal. Yesterday, the pupil in my operated eye was much smaller than my other pupil (I had postulated that this was because I was not using the eye for much vision, but could have been a result of something during the surgery). Today my pupils look about the same size, which I am hoping is a good thing.

I also want to ask the Dr. about putting regular rewetting drops in my eyes, as the operated eye feels dry and it may be from the bandage contact lens that is covering the transplanted eye (I don't think that I mentioned that Dr. Rapoza places a no power contact over the operated eye to help with the healing).

I also took a shower this morning for the first time since surgery. It felt good to clean up and to shave. I faced away from the water most of the time and closed my eyes when I faced the water and it was not a big deal at all. Speaking of cleaning up, I have been washing my hands relentlessly to keep them clean when dealing with my eye and also using the same Purell that I use when changing my son Bradley.

All in all, today was a bit of a bring me back down to earth day as it kind of hit me today that I had transplant surgery (I am still ecstatic with the results and how I feel, but again, I think the adrenaline has just worn off).

Also, I thought it would be fun to post some pictures...

Eyes Pre-Surgery...

Morning of the Surgery...

Post Surgery Eye Patch with Percoset...

My Kayne West Glasses...

My eye after surgery...

My wife Caroline and my son Bradley - a beautiful sight!

2/1/09 - 7:00 PM - 3rd Day Post Surgery

Today was a much better day than yesterday - I am sitting here watching the Super Bowl and although, the vision out of my operated eye is not any better than yesterday, the pain in my eye and the fatigue is noticeably improved.

After a night last night in which my eye felt very dry and scratchy and the white of my left eye was very red and bloodshot, I decided to call the Dr.'s office today and ask if it was ok if I put re-wetting drops in my operated eye. It being Sunday, I received a call back from one of the on-call Dr.'s and she told me that it was fine, as long as the drops that I put in my eye were preservative free (since the combination of drops I am already putting in my eye already had a decent amount of preservatives and too much can be toxic to the eye). I think that this has made a huge difference.

I ended up getting Thera Tears drops that were advertised as preservative free in the eye (I guess the preservative turns into water and oxygen when it hits the eye) . I also picked up another product that I like called Nature's Tears, which is an eye mist (basically just water in a mist form that helps to keep my eyes lubricated). Lastly, I picked up Omega Three flaxseed and fish oil tablets, which I have used in the past, that tend to help with keeping the eye naturally lubricated. I really think that the combination is great as my eye is always more comfortable when it is not dryed out.

As far as the fatigue is concerned, today was a lot better. I actually made it through the entire day without taking a nap and feel fine at 7 PM. I am going to go to sleep directly after the Super Bowl, however. I was even considering going back to work tommorow, but I think that I am going to work from home and then try to go in on Tuesday (although, I am going to play it by ear and see how I feel).

I even felt up to a trip out to the mall today to pick up a pair of sunglasses. Although, the ones that were given to me at the Dr.'s office were "quite trendy", I thought it made sense to pick up some wrap around style sunglasses that were a little more appropriate to wear in public (I figured the wrap around style would better protect my eyes from wind and dust, etc.)

All in all a very good day and much improved from yesterday...

2/2/2009 - 5:30 PM - 4th Day Post-Surgery

Today was a very uneventful day as not much changed.

The vision in my left eye continues to be basically useless and it kind of sank in to me today, that it will likely be many months, if not a year before I can see correctly out of my operated eye.

The first goal will be for the eye to heal, which I think takes anywhere from a month to a couple of months, and then hopefully, I will be able to have some sort of correction for the eye (glasses or contact lenses). I think for a lucky few people, the vision is actually good without any correction, but I am not holding out hope for that possibility.

I am actually REALLY hoping that the vision will eventually be good enough that I only need glasses, rather than a soft contact, or possibly the same system I have in my right eye (piggyback - a soft lens under a hard lens).

In the interim, the feeling is disconcerting, basically having to see out of one eye - when I had a similar situation (I was having trouble wearing a lens in my left eye for awhile) it usually took a good week or so before my brain adjusted to the trick of seeing out of one eye exclusively - it has been used to having corrected vision, although, not that great in my left eye for awhile. The weirdest part is going to be as the vision improves in that eye (I am assuming the adjustment is going to be ongoing for the entire period until my vision stabilizes).

Oh well, just things to deal with on the road to recovery. I am going back to work tomorrow - I may work a half day, depending upon how I feel (Thursday is my next appointment - I am interested to hear about the healing progress)...

2/4/09 - 11:30 AM - Back at Work

I didn't post yesterday, but I had a busy day. Yesterday was my first day back at work and it went great. I actually drove into the office (against the pleadings of my wife Caroline) as I can see fine out of my right (not operated upon, but still Keratoconic) eye. I did the same today and the driving is fine - I drive rather slowly in the right lane, but I assume people just think I am old...

Work was fine, it still quite disconcerting to be seeing out of just my right eye, but my brain is already adjusting to it and I am starting to be able to function at an adequate level. I have an extra larger monitor (I think it is like 26 inches) at work, which helps with the vision (and has helped for awhile) and I get by interacting with people by pretending to see better than I can - I am pretty good at it as I have been doing it for the past 10-15 years.

I am getting better at putting the drops in my eye by myself, but still have my wife Caroline put them in my eye at night to make sure that I get at least one set in perfectly each day. I am also continuing to take the Tylenol every 4-6 hours, but to be honest, I am not in any real pain any longer.

I have my next appointment at 1 PM on Thursday and am excited to hear about the progress...

2/5/09 - 5:00 PM - 1-Week Follow-Up Appointment

Today, I had my one week follow-up appointment and all went well. Dr. Rapoza told me that my Endothelium had healed (apparently this takes anywhere from one week to a couple of weeks) and he removed the bandage contact lens from my eye. The Endothelium is basically the outermost layer of my cornea and my eye can now be exposed to the elements (I am still definitely wearing sunglasses outside).

Apparently, now it is a waiting game, as my next appointment is on March 19th, about 5 weeks away. During that period of time, my eye is supposed to slowly heal, after which, adjustments can be made to the sutures, as well as potentially fitting me with correction (glasses or contact lenses). My vision is supposed to steadily improve over this period of time and I am excited to see the progress.

I am probably going to start posting less often at this point, as I am not sure how much there is going to be to report. The one thing that I forgot to ask the Dr. today was if I could get a copy of the video of the procedure, which they filmed, as I thought it might be cool to post on the blog (for those less squeamish).

I am going to continue to take the Zibrom and Zimar for another week (although, both now 2 times per day) and I need to continue to take the Pred Forte for at least another 4 months.

I also found out at my appointment that there is a specific number assigned to my cornea, so if I write a letter to the eye bank (which both myself and my wife Caroline are going to do) that it can be delivered to the family.

Hopefully, my next post will report improved vision!

2/9/09 - 12:30 AM - Still Going Strong

Just a quick note as not much has changed since the last time that I posted.

I am now starting my second week of work and my brain has officially adjusted to the change in vision - I am seeing relatively clearly as my brain is interpreting the images mostly from my corrected right eye.

I think that my vision is improving in the left eye, although, it is hard to tell as it is still very blurry. I am continuing to use my eye drops as prescribed and will cease everything but the Pred Forte this coming Thursday (2 weeks post surgery).

I have resumed normal activities for the most part - obviously working, household chores, etc. and have also worked out a couple of times (light cardio - I am still holding off on lifting any weights for awhile).

One of the things that I have noticed, which may or may not be related to the surgery is that post the initial period of being worn down, I seem to have a lot of energy. I think it may be due to the fact that prior to my surgery, I decided to go on a diet and also to start taking vitamins and other nutritional supplements that I thought would be helpful with recovery. I have continued post the surgery and I have a feeling that this may be the culprit (although, there is this little voice in the back of my head that says that I AM taking steroids...although, I don't think that it is possible for the eye drops to affect me in this way).

I am also traveling tomorrow for the first time - I don't see why it would be a problem to fly, but hopefully there are no issues...

2/12/09 - 5:00 PM - Eye Hurts

I am sitting at a terminal at Laguardia airport, waiting to fly home to Boston (my flight has been delayed twice) and my eye hurts.

I have been traveling for business the past two days and really have not had much of an opportunity to take Tylenol and have not gotten phenomenal nights of sleep two nights in a row.

It is really more achy than anything else and I have this irrational worry that I have ripped one of the stitches, although, there is not evidence to support this - I have continued to put in my drops and today is actually the last day of everything except the Pred Forte.

I keep checking my vision and have not noticed any real improvement, other than (strangely) I seem to be able to see very clearly up close (actually better than my right eye), although, for away I can not see much at all (maybe this has something to do with the swelling).

In a funny event today, my lack of depth perception was highlighted when I poured a glass of diet coke onto the table during a meeting, almost completely missing the glass I was aiming for...

Although, I am trying my best, it is still a little disconcerting only seeing out of one eye - I am still looking forward to this eye healing, however!

2/18/09 - 5:00 PM - Steadily Improving Vision

Figured I would drop a note to the blog, although, not much is going on with my eyes. My vision is steadily improving, although, as Dr. Rapoza predicted, it is very incremental progress, i.e. that I can't tell a difference from day to day, but notice that it is improving each week. I have good days and bad days regarding how much my eye hurts, dryness, etc., but in general, I am still very pleased with all of the results.

I am really looking forward to my next appointment on March 19th when I can hopefully have a corrective contact lens fitted, glasses, etc.

I am going on vacation next week to Grand Cayman and although Dr. Rapoza told me I am basically good to go with anything (with the exception of swimming in a pool because of the chlorine) I am going to skip the scuba diving with the stingrays and the horseback riding - although, my wife Caroline is doing both!

2/24/09 - 8:00 AM - Vacation

I am on vacation in Grand Cayman and the eye is doing great! My wife and I have been here for 4 days so far and other than the really bad sunburn that I have pretty much all over my body, all is very good.

I have been on the beach, swimming in the ocean, doing water sports, etc. and am going to go today to swim with the stingrays, which is apparently a thing people do in Grand Cayman. I have stayed our of the pool, as Dr. Rapoza told me that Chlorine was bad for the eye, but the ocean has been totally fine.

There has not been any noticeable improvement in vision since my last post, although, I can see sharply at close-up ranges, i.e. holding my blackberry very close to my eye. I am beginning to think that I am just going to have to wait for the eye to heal and then be corrected with contact lenses, etc.

Boy, this sunburn really hurts...

3/19/09 - 10:00 AM Nervous

It has been awhile since my last post, and I am scheduled for my 6 week appointment today and to be honest, I am a bit nervous...

The recovery has been great, with very little pain, albeit a bit of intermittent discomfort. The most interesting part is my vision. At very close ranges, I think that I see MUCH better than I have seen in a long time out of the operated eye, or the non-operated eye. I can see things, like individual grains of hair and textures of things that I have not seen at all for a long time. However, I still don't see much of anything at long distances. I am HOPING that this is because I am still near-sighted in that eye and that once I have correction (contact lenses, glasses, etc.) for that eye, that I will be able to have good vision. My fear is that this is not the case, but I am remaining positive. I am also HOPING that Dr. Rapoza will tell me today that my eye is healed enough to begin to fit contact lenses, etc. in the near future.

My appointment is at 2:45 PM today - I will report back tommorow with results!

3/20/09 - 6 Week Appointment

As I wrote earlier, I had my 6-week appointment yesterday.

The good news was that Dr. Rapoza told me that everything was progressing along great. My eye was totally clear (no infections, or rejections) and that the healing was coming along nicely.

They tested the vision in my eye and it appears, however, that I have a lot of astigmatism, due to a couple of factors (the swelling and the arrangement of the stitches). Dr. Rapoza scheduled me for an appointment to re-align the stitches, which he told me, once completed, should hopefully get rid of the astigmatism and leave me with much better vision (maybe just nearsighted). The procedure is actually done in the chair in the Dr.'s office and he told me, it should not hurt much, but that my eye will be tender afterwards for about a day (he asked me to bring someone to drive me home). He also is making me wait another 6 weeks, as he let me know that he likes to wait about 3 months before doing this procedure, less the wound open-up before it is fully-healed.

Obviously, I was happy that things are progressing well with the healing, but a bit disappointed that I will have to wait another 6 weeks before I can start seeing better out of the eye. Apparently, once this procedure is done, then I can also wear a lens/glasses, etc. to correct any remaining problems (near-sightedness, etc.). So, I guess it is just more waiting....

Oh, also, a couple of interesting tidbits from the appointment. The technician said something amusing, which is that he could tell that I was taking my Pred-Forte drops (steriod, anti-rejection drops) because I had a bunch of dried up white goo on the inside of my eye, which is how he said he can tell when people are lying about taking their drops - no goo. Also, when I commented that I was hoping that I would be able to get some vision correction that day, he said, "well, we did just cut off your eye and put a new one on, so try to be a little patient with the recovery..." Definitely, good perspective...

3/31/09 - 2:00 PM - Close Call in Dallas

I was traveling this past week in Dallas on business and had a bit of a scare that I thought was worth mentioning.

I arrived in Dallas on Monday night, went to sleep in my hotel, and woke up to find that my operated eye was extremely red and bloodshot. It hurt a good deal, mostly a scratchy and achy feeling and to say the least, I was worried (rejection possibilities, etc.)

I had a couple of thoughts, which were (a) I had put a Pred Forte drop in my eye right before I went to sleep, which is unusual, I usually do it around dinner time (b) I thought that maybe that I had been rubbing my eye during the night as I don't wear my guard anymore and (c) I thought maybe I had an allergic reaction to the sheets in the hotel, cleaning agents, etc.

I immediately called Dr. Rapoza's office and asked the nurse on call what I should do. She asked me a series of questions aimed at determining if I was having a rejection episode, including: (a) was my vision worse than it had been the previous day - answer: no, (b) was I experiencing any light sensitivity - answer: no, and (c) did my eye hurt a lot - answer: it hurt, but was more scratchy and achy than real pain.

The nurse told me that it did not sound like I was having a rejection, but recommended that I come into the office the next day. Since, I was scheduled to be on the road the remainder of the week and not to be back in Boston until Friday, she recommended that I see someone in Dallas. She hooked me up with someone that Dr. Rapoza knew in the area and I scheduled an appointment for that evening, after my activities during the day in Dallas. She also told me to continue to take my Pred Forte as prescribed throughout the day.

I had my day's meetings and over the course of the day, the redness in my eye went down quite a bit. The eye was still scratchy and achy, but it felt much better than when I woke up. By the time, I got to the Dr. in Dallas, I was feeling much better, but decided to go anyway to be safe. Dr. Fagadau ( saw me and told me that the graft looked fine and that there were no rejection issues with the eye - phew! He actually commented that Dr. Rapoza had done a good job - nice to get a second opinion! He surmised that I had likely rubbed my eye/had an allergic reaction, etc., which caused the inflammation and that the Pred Forte has treated this over the course of the day. He also noted that my vision was poor, which he did not seem concerned about at this stage and told me I was good to go and to contact him if I had any issues while I was in Dallas. I was actually very impressed with him and also that Dr. Rapoza was able to recommend him while I was traveling.

All in all, a relatively scary initial experience turned out to be a good thing, as it made me feel comfortable that I could get good care while I am traveling. A quick note on my vision, although, it is still not great, I am starting to think that I can see a bit better out of the operated eye - it is baby steps, but I think it is improving...

4/19/09 - Astigmatism Adjustment

So I had a really good day on Friday with my eyes....

I had my appointment with Dr. Rapoza for my astigmatism adjustment, which basically means that they adjust the stitches in my eye, so that the cornea is as spherical as possible.

I got to the appointment about 4 PM and unfortunately had to wait awhile as Dr. Rapoza had an emergency he needed to attend to - it was worth the wait. Dr. Rapoza first did an over-refraction on my eye and actually got my vision to about 20/40 or 20/35. My wife Caroline actually teared up as she saw me reading the small letters on the chart. I think this basically means that once the eye is completely healed and we can fit a contact lens to it, that I will see at least this well out of the eye.

Dr. Rapoza then put numbing drops in my eye and proceeded to measure the curvature of my eye with a device I had never seen before. He told me that my eye was 3 diopters (I may be getting some of the technical spellings of these terms wrong, but oh well...) off on the horizontal and 1 diopter off on the vertical. I guess to be perfectly spherical, you don't want to have any diopter difference. He took a pair of "tweezers" (there is probably a technical term, but they looked like tweezers) and adjusted the stitches in order to fix the diopter difference. He told me that his strategy was similar to a "stick in the mud", which is to say that he wanted to go 1 diopter too far and as the eye healed, it would come back to perfectly spherical (hopefully!). He was very happy with the adjustment and told me that if it is completely successful that I will not have any astigmatism and only have my near-sightedness (which we can deal with with a contact lens/glasses, etc.).

He gave me additional antiseptic drops that I need to take 4 times a day for 4 days (I should also continue to take my Pred Forte once a day) and told me that I could come back in 1 month. The next appointment I will hopefully get fitted for a contact lens! I am assuming at this point and I will be able to see out of the eye - very exciting!

My eye is still a bit scratchy 2 days later, but it really does not feel to bad. I have been taking Tylenol for comfort and I have been fine. I also went to a wedding last night and had a few drinks and also smoked a cigar with an old friend - that can't possibly be helping!

All in all, I am very excited about the progress and about the possibility of being able to see in 1 month! Thanks to everyone that have been posting comments - it is a journey that many of us are on, but I think it will be well worth it in the end!

5/12/09 - More Waiting

I went to see Dr. Rapoza last week and unfortunately, it looks like there is more waiting. Apparently, he needs to do another astigmatism adjustment (the stitches pulling procedure I described earlier). Unfortunately, I did not have anyone with me at the appointment and you need someone to drive you home afterwards, so I need to make another appointment. Unfortunately, or fortunately, I am going to Italy this week for some vacation, so I will have to wait until after I get back. After he does the procedure, I then have to wait about a month before it heals and I they can fit a contact lens to my eye. Oh well!

I am dissapointed, because I was hoping to see - it would have been nice to have the improved visiion for vacation, but I am still excited that it is coming up soon.

Something interesting that I learned at the last appointment is that the reason that I am still nearsighted is that the transplanted cornea donor was nearsighted and I inherit that aspect of the cornea. The guy was really nearsighted, because I can't see anything far away - my vision up close is actually pretty good right now (but very close). It is interesting to me that they can't screen for this - it would be cool if they could just use people with 20/20 vision. I am not complaining in any way, I just think it would be cool if they could do it....

At the Dr.'s office, it appears like I am getting to 20/30-20/40 corrected vision still, however, Dr. Rapoza said it was improved from the last time, so I am encouraged that it could get even better. The technician told me that very few people actually get down to 20/20 and that it is really more luck than anything else.

Oh well, I will report back after the next adjustment and hopefully in a month or so with the ability to see!

Also, I thought it would be fun to post a pictures of the little guy...he is getting SO big! These are from Mother's Day this past weekend...

The Family!

Bradley and his Mommy!

Hangin with Dad...

The kid is cute!

5/23/09 - Crazy Day

So yesterday was a crazy day.

After a long week of traveling for work, I left the office early on Friday to go get my final astigmatism adjustment. Dr. Rapoza told me that the eye looked great and proceeded to stick a pair of tweezers in my left eye to adjust the shape of the cornea. He commented that it is amazing what I would let him do to my eye as the concept of someone pulling on my eye with tweezers would have seemed absolutely crazy to me a couple of months ago. The eye was really only 2 diopters off to begin with in one direction and so what he did was a small correction - he still opted for the "stick in the mud" technique as he pulled one side 1 diopter passed symmetrical, with the hope that it would heal perfectly.

After he was finished, he gave me some Zymar drops and told me that I need to take them 4 times a day for 4 days, but afterwards, I am free to get a contact lens fitted!!!!

I am really excited about the possibility of being able to see with a contact lens. I am going back to see Dr. Watanabe at New England Eye Associates, where I have been seen for quite a while for lenses. Hopefully, I can schedule an appointment next week and get a contact lens shortly! As I mentioned, I can see very well at extremely close distances (so so so much better than my other eye), but I am still very nearsighted. I am hoping that I can get to 20/30 or 20/40 corrected with the contact lens. Dr. Rapoza also is taking me off the Pred-Forte and putting me on another anti-rejection drop, which I can’t remember the name of right now, but will post later once I get the prescription filled.

All in all, this has been a phenomenal experience to date. Dr. Rapoza has been a magician with my eye and I am so so so so glad that I did the research and found the best surgeon possible. My fingers are crossed that the last part of my healing and correction will go well. Dr. Rapoza cautioned me about a couple of things before I left as well. He told me that there is always a chance of rejection and if I ever feel pain, loss of vision, white spots, etc. that I should come in immediately, like within a day, as the earlier you catch a rejection the better. He also cautioned me that any blows to the head (contact sports, etc.) can cause the cornea to dislodge, so to be careful - I think that this is a lifelong thing. He told me that I could schedule another appointment in 6 months - hopefully I don't need to see him beforehand for any reason.

As I said, this has been a long process, but totally worth it. My wife Caroline and I were sitting eating dinner last night and she reminded me that I had told her that the pain and ordeal that I dealt with the disease at times far outweighed anything I dealt with in regards to the surgery. Again, I credit a great deal of this to having a great surgeon, but also to a good deal of luck and positive thinking – and also phenomenal support from my wife Caroline and the rest of my family and friends. Wish me luck next week as I move forward, hopefully with rock solid vision!

Oh, it is definitely worth mentioning that there is without a doubt some kind of cosmic balance. I came home, in pain, but elated from my appointment ready to tell my wife Caroline and son Bradley about the good news and likely to get some sleep as my eye hurt a lot. My son Bradley was just waking up from a nap and when I went up to get him, I noticed that he was REALLY hot. I brought him downstairs and we took his temperature, which was almost 102. As we were calling the Dr., Bradley proceeded to projectile vomit all over me. He had the saddest look on his face I have ever seen – it was a “mommy, daddy, why is this happening to me” kind of look! Oh poor Bradley! We ended up taking him the emergency room at the advice of our pediatrician and spent the night there, where they basically told us he was just sick and to give him fluids, etc. When we brought him home, he vomited all over me another time before going to sleep for the night. Needless to say it was a long tiring night and we were quite worried, but in the end all was fine. I am sitting here with him right now in the morning as he is playing with his toys as I type this out.

Hopefully, next week when I get my contact lens, I will at least be able to see the vomit coming my way! Again, Thank you to everyone that have been reading the blog and making comments – more to come next week!

5/28/09 - Appointment Scheduled

So I scheduled my contact lens fitting appointment (first available) with Dr. Watanabe for Tuesday of next week. I am pretty excited and am really hopefully that all goes well. As many people with Keratoconus know, one of the dangers of surgery is contact lens intolerance and I am REALLY hopeful that this is not the case with me. It seems like I will only need a soft lens and hopefully there is not an issue with dryness, etc.

The astigmatism adjustment has healed nicely and I have stopped taking the Zymar. As I mentioned before, I did get switched to another anti-rejection drop called Lotemax, from the previous Pred-Forte. Interestingly, I was charged a co-pay of $30 (insurance paid about $70) for the new drops as it is not a generic. The Pred-Forte was only a $10 co-pay. It made me feel very lucky that I have great insurance and that the bulk of all of this was paid for - I actually got a bill from my insurance for $25 for the surgery - the insurance paid the rest of the approximately $5,000. I am sure that there are a lot of folks out there for which the surgery and maybe even contact lenses are not a possibility for financial reasons and this makes me sad as this is a very treatable disease.

I am heading off to my 10-year college reunion on the 5th and 6th and am hopefull that I will be seeing great by the time I leave!

6/2/09 - I can see!!!

So I got back a couple of hours ago from my appointment with Dr. Watanabe and I am psyched because I can see!!!!

To be more specific, I am getting vision out of my left (operated) eye that is significantly better than I currently get out of my right eye!!! I have been trying to explain it to people, but the best way I can describe it is that I see much more sharply than before and also can see details. For example, if I close my left (operated) eye, and look out of my right Keratoconic eye, I can still see all the same stuff, but it is just blurrier (probably best way to describe it is as if I am looking through a pair of glasses with a smudge on them). In addition, I can also see with much greater depth perception than before (as I am now getting vision out of both eyes). It is not quite like going from 2D to 3D, but it is more like going from 2.5D to 3.0D. Actually, a good way to describe it is as if I am seeing in high definition now, as opposed to analog television - way better!!!!

So details. I had my appointment with Dr. Watanabe at 4:00 PM and his resident (I apologize that I can't remember her last name, even though I asked twice) started me off by looking at the eye and then doing a corneal topography (basically a device that attempts to take a 3D image of the eye) to help with fitting the contact lens. Apparently, even the surgery can not make the frickin device work well for me as I got an OK image, but not great. My eye is still a little steeper at the top (the opposite of before) but not nearly as bad. In addition, the stitches are "pulling" on my eye a bit, which creates a weird dynamic for fitting the lens.

After the over-refraction on my left eye, it appeared that I could get down to 20/40 vision, but they thought that I might be able to get better if they used a hard RGP lens as the fit could be better. We tried a bunch of these lenses and it seemed as if it was going to be tough to get the fit right. The steepness at the top of the cornea and the "pulling" made it a difficult combination. In addition, I reminded Dr. Watanabe that I had some serious intolerance to plain RGP lenses (and especially larger ones) which is why I am wearing the piggy-back system. Apparently, in order to not have the lens rest on the stitches part of my cornea, we needed to use a relatively large lens. At that point, Dr. Watanabe decided that we could just try a soft lens as I was getting 20/40 vision already. He mentioned that if I am able to tolerate a soft lens and if I don't have any issues with oxygen on the new cornea, that we could actually try a piggy-back on that eye at some point. In addition, he mentioned that if the stitches fall out at some point or are removed that it will make it much easier to fit the contact lens to the eye.

So I put on the soft contact lens, which is a very strong power, I believe it is a +8.0 and wow! I mean, I can not see as well at close ranges because of the power, but at a regular distance, I see amazing. I am sure that some are thinking that 20/40 vision is not amazing, but for me, to see 20/40 sharply is really extraordinary! In addition, Dr. W reminded me that I need to start reading things at a normal distance instead of holding them up so close to my face (old habit that will be a joy to break..).

I then asked them if I could get a pair of glasses as I can actually see out of my new left eye with glasses. They fit me and it is a little weird as they really don't help in my right Keratoconic eye, but I feel like I will actually be able to take my lenses out at night and rest my eyes instead of wearing them every waking hour of my life (small pleasures, but I am really excited about it...)

I came home tonight and was able to see my beautiful wife Caroline and amazing baby son Bradley so much clearer than I have been able to see them in a long time (maybe ever!). It is really an amazing thing, and I think that this has the potential to get even better as my eye heals and the stitches maybe come out! I actually commented to my parents that when I looked in the mirror, I looked really old! I can actually see the pores in my face - when did that happen? It is actually really amazing to see my face with my new vision - it has been awhile since I actually saw what I really look like!

So all in all, an amazing day. I am trying to contain my excitement a bit as I am REALLY hopeful that nothing happens regarding contact lens intolerance in the new eye, etc. but it feels pretty good right now - (I am actively knocking on the wood of the desk!). In addition, on top of being able to see, the most important thing for me is that I now have a much better chance of not going completely blind as I still do have a degenerative eye disease and my right eye will likely continue to deteriorate. I really am extraordinarily lucky on some many fronts relative to this disease. An amazing support network of family and friends, amazing Dr.'s - Watanabe and Rapoza!!!! and amazing luck! Here's hoping that everything continues to go well - wish me luck!

6/10/09 - Eye Hurts

Just so that I didn't get too cocky about this whole process, over the past couple of days, my operated eye has been very achy...

My personal theory is that it is either a) a dryness issue with the new contact lens or b) a oxygen deprivation issue with the new contact lens.

I started putting in rewetting drops this morning, which hopefully will help if it is a dryness issue and I have an appointment with Dr. Watanabe in about a week if the problems persist. This morning does not feel too bad, but it has been getting worse throughout the day. Again, I am crossing my fingers that I don't have any issue with wearing a contact in that eye as this would have been a pretty crappy process to go through to end up not being able to see.

In any event, I am going to keep a positive attitude on it as I am sure that there are a lot of options, etc. for dealing with the eye and worrying is not going to get me anywhere in the interim...

6/24/09 - Rough Day

So I had a rough day yesterday.

I went back to see Dr. Watanabe after about 3 weeks of wearing my new right contact lens. Unfortunately, I have neovascularization above my pupil. Essentially, this means that blood vessels are growing from my upper eye towards my pupil and are already starting to encroach upon the corneal graft. Apparently, this can be caused by a number of factors, but in my case is either caused by (1) a lack of oxygen passing through the soft lens to my cornea, which may be exacerbated by the fact that the upper part of my eye is also underneath my eyelid or (2) Rubbing of the lens on that portion of my eye, again, this could be also made worse by the rubbing of my lid on the lens. Unfortunately, this may mean that I could be contact lens intolerant, or at least intolerant to the soft lenses. Again, unfortunately, Dr. Watanabe had already tried to fit me with a number of RGP lenses, none of which were a good fit due to the shape/configuration of my eye with the transplant. So, where do we go from here?

Unfortunately, I have the feeling that this is going to be another long journey of trying to find a contact lens that fits my eye. The first step was that Dr. Watanabe gave me another soft contact lens to wear that is apparently more oxygen permeable. He took photos of my eye and of the blood vessels and the hope would be that if this lens let's more oxygen in (and this is the issue) that the blood vessels will not progress in the week that I am wearing this lens. If the blood vessels continue to progress, we have to seek some other options. One option would be to try a sceral lens, which is essentially a very large lens that sits on the white portion of the eye and vaults over the cornea. Again, unfortunately, I had tried this before with the old KC cornea and I had been very intolerant to this type of lens - my eye got all red and pussy and it was intolerable. Dr. Watanabe told me that if we went down this route that we could try a lot of different fits and that it might have been that the fit of that particular lens was not right. This is a big game of trial and error and I know the drill after years of trying different lenses.

If for some reason, this does not work, there are additional options. The first would be to wait and let my eye heal more as the shape/configuration of my eye will likely change as the eye heals. In addition, if Dr. Rapoza can take out the sutures in the eye (he usually waits until the break to do this) it will likely create a different fit for a lens and may create a situation where a lens is easier to fit. Lastly, Dr. Watanabe described two additional procedures that could be options. The first would be doing some type of laser correction surgery on the eye (similar to what lots of folks do to correct vision). He was not very enthusiastic about this approach, as it is very dangerous apparently with a transplanted eye and seemed like a last resort option. Second, was a new procedure that actually inserted a lens underneath the cornea in what sounds like some sort of permanent implant. He did not know if Dr. Rapoza performed this surgery, but said that he knew of a couple of Dr.'s that actually did the surgery - again, this sounds like something that we would only try as a last resort.

So, all of this was not very good news. I guess that I knew that this was a risk of having the surgery, but to be honest it is amazingly disappointing, especially after the surgery going so well and recovering and then being fitted with a lens that let me see things that I have not seen in 10+ years. I was really bummed out yesterday, but my resolve is starting to build again today as I know it is another eye challenge that I will just have to conquer. Again, wish me luck with the next stage of this process, I have an appointment with Dr. Watanabe again next week, so here's hoping that something works!

6/30/2009 - Better Day

So I had my follow-up appointment with Dr. Watanabe and it went pretty well! To be honest, I was quite worried that the neovascularization would have progressed and I would not have been able to continue wearing my contact lens, however, this was not the case.

Below you can see some pictures that they took of my eye, which are pretty cool!

The first is the neovascuralization when I went to my appointment the last time:

The second is the neovascularization this time:

The third is actually a VERY cool image of the graft itself:

It is very hard to tell from the images, unless you zoom in (I have a VERY big screen at work for obvious reasons), but the neovascularization does not appear to have progressed and in fact it appears to be getting a little bit better (probably too close to call here). According to Dr. Watanabe, the blood vessels do not actually recede, but instead do not fill up with blood, which is a good thing. Unfortunately, it appears that we have to monitor this closely as any future problems could result in the progression of the blood vessels.

Dr. W and team also looked at a number of other factors in my eye, including putting Fluorescein into my eye and checking for staining, which is essentially a dye that highlights any cell damage to the eye (usually caused by contact lens rubbing). In addition, because I was complaining about the eye being achy, they also examined my eye for any inflammation. There does not appear to be any inflammation, but there is a little staining in the eye from rubbing and Dr. W. advised me to keep the eye lubricated throughout the day with eye drops (and even potentially to put a drop of the lubricating material in the eye when I insert the contact lens).

I am scheduled to go back to see Dr. Watanabe in 3 weeks and can wear the contact until then, which is an additional 3 weeks of vision and maybe even longer - pretty cool! He did advise me to come in sooner if I feel any additional achiness or other issues with the eye.

I felt the need to tell Dr. W again, but he really has been an amazing Dr. over the years for me. When I first went to see him I was really on the precipice of not being able to see and he got me 7+ years of vision before I needed the transplant. In addition, as usual, he has been phenomenal, since having the transplant. As I did with Dr. Rapoza, I initially did a bunch of research to find the best person around and I am mighty glad that I decided to start seeing him. I know that he has a private practice, but it is pretty cool that he is in Boston once a week at the teaching practice that I frequent - it has also been cool over the years to think that I have helped out the students there through being able to participate in treating me.

Again, the journey is by no means over, but it is always nice to have good days - I hope you enjoy the pictures - pretty cool huh!

7/31/09 - Update

It has been awhile since I posted last and a bunch has happened, so I thought it made sense to give an update.

Dr. Watanabe has continued to monitor the health of my eye with the contact lenses. He has continued to look at the progression of the neovascularization, which has not really progressed significantly from the the pictures I previously posted. In addition, he had seen some edema in the center of my eye and also some staining on the eye, around the stitched area and for some reason on the nasal side of my left eye. As a result, he sent me back to Dr. Rapoza to have a look at the eye and ascertain what we should do. I saw Dr. Rapoza about a week ago and it was actually a very good visit. He told me that he did not believe that the neovascularization, etc. was a problem at all and everything seemed within the normal range for my stage in the healing process. He told me that he thought it was fine for me to wear contact lenses, as long as I was not seeing a lot of additional progression in the neovascularization or feeling a lot of pain or discomfort. He also mentioned that he could take out the stitches if we wanted, but that it didn't likely make sense to do it at this stage. Obviously, I viewed all of this as great news as it allows me to see for the time being!

I then had another appointment with Dr. Watanabe in which he looked at all of the issues with my eye, which had not progressed in any material way and since Dr. Rapoza seemed OK with me wearing lenses, advised me that I could continue to wear a soft lens in the eye. I had actually been through three different types of lenses at that point (Acuvue Oasis, Biofinity and Day and Night). He basically told me to let him know which I liked better as all of them seemed in the fit range. I ended up picking the Acuvue Oasis as I was getting the best combination of comfort and vision. I can see about 20/40 out of the eye and also can wear my lenses all day, typically about 16 hours without any material discomfort - basically they hurt at the end of the day and I use rewetting drops, but it is manageable.

Again, all in all, I view this as a great result for the time being and if this is how my vision stays for the long haul, I will be very pleased!

I have an appointment to go back and see Dr. Watanabe in about 2 months...fingers crossed!

Oh, and as I side note, it turns out that I need to have surgery on my shoulder to repair a torn labrum - I really should have taken out the extended warranty as I feel like I am fallin apart! - oh well, I think that shoulder surgery should be a breeze compared to the corneal transplant!

1/28/10 - Lots to report

It has been a while since I last wrote on this blog and a lot has happened!
I believe that the last time that I wrote, I had been dealing with NV issues with blood vessels growing into my eye. This crisis was averted after a visit to Dr. Rapoza, who seemed to think that it was not a large problem and just should continue to be monitored.

After this visit, I proceded to wear a soft Acuvue Oaysis Silicone Hydrogel lens in my eye for a couple of months. I got really decent comfort and not bad vision out of the soft lens, so I really thought that I was going to be fine, boy was I wrong!
I ended up getting busy with life (work, family, etc.) and did not see Dr. Watanabe for a couple of months. We were supposed to be continuing to explore fitting an RGP lens to my eye, as it would be better from an oxygen permeability perspective, etc. When I did end up seeing him, it turned out that as a result of the soft lens that I was wearing in my eye, I had developed a pretty severe case of infiltrative keratitis with KPs, which basically means that white blood cells had infiltrated my cornea as a result of an infection in the eye (most likely under the contact lens). This apparently can happen with soft lenses. Apparently, they were coming in both from the outside of the eye and the interior of the eye, which is bad! The biggest reason that this is bad is that it can cause a rejection of the corneal graft. I ended up having to put a couple of drops in my eye 4 times a day for at least a month (Pred Forte and Tobramycin) – I believe that the Pred Forte is a steroid for anti-rejection and the Tobramycin is an anti-biotic for anti-infection. I also needed to remove my contact lens from that eye for the entire time, which of course is difficult, since I then see only out of one eye and badly!

On a positive note, the infection cleared up, and after about a month I was able to put a lens back in the eye. Since I can’t seem to find an RGP that fits, Dr. Watanabe has been experimenting with scleral gas permeable lenses, which are basically huge lenses that vault over the cornea and sit on the white part of the eye. This fitting process has been quite difficult, as I have a ton of eye issues, which include:

1. My corneal graft is raised at the stitch line, so most lenses, even really big ones rub in the stitching line.
2. My eyelid is really tight so any lens that sits on my eye get’s pushed down by my eyelid, creating a situation where it does not sit centrally
3. I have the neovascuralization, so any lens needs to be really oxygen permeable
4. I have this propensity to infection so any lens needs to have fluid exchange under the eye (note: most soft lenses that are oxygen permeable, allow less fluid interchange)
5. I am really nearsighted on top of everything - +8.0!

The reality is that all of these problems make it really difficult to fit any type of lens to the eye. So in the fitting process for the scleral lens, I ended up wearing soft lenses to try to see something that worked, including going to a different cleaning solution (clear care) and also trying one a day lenses. I even ended up wearing 2 week lenses every day at one point, which is pretty expensive, but worth it to keep my eye clear of infection. The unfortunate reality is that about another month later, yesterday, I went back to see Dr. Watanabe and found out that I have more white blood cells in my eye. Unfortunately, this means more drops and also a period of not being able to see well again out of that eye.

Dr. Watanabe and I discussed my options and it looks like the best one, after consulting with Dr. Rapoza, is to remove the stitches from my graft early, which will hopefully help with the fit of an RGP lens. I now need to make an appointment for this and also continue to try different lenses and stay on the drops in the interim. Hopefully, this works, because I seem to be running out of options. It has now been over a year since the surgery and I still don’t see well consistently out of the eye, which is frustrating.

I am continuing to stay positive and of course realize that there are things that can be done, including having lasik or something similar over the graft (which of course is dangerous)….

I am going to discuss all of my options with Dr. Rapoza and am also hopeful that the removal of the stitches makes the contact lens easier to fit. As always, I am grateful that I have great medical care to help me through the issues.
Hopefully, I will write more soon with good news!

2/19/10 - Stitch Removal Day

So today was an interesting day.

As I think that I mentioned, I had an appointment with Dr. Rapoza to evaluate me to have the stitches removed from my graft. The reason for this was that Dr. Watanabe was having a lot of trouble fitting me with a lens (soft and hard corneal and even sceral) as a result of the fact that the stitch line was raised on my graft and any of the contacts we tried were rubbing on the stitch line. This was complicated by the fact that soft lenses (the best fitting) tended to cause infiltrates and an infection in my eye and hard lenses were being pressed down by my "tight upper lid" and rubbing on the graft. The worry here was that the neovascuralization (blood vessels growing in to my graft) could eventually cause rejection. The hope was that by removing the stitches, it could make it easier to fit a lens.

I am attaching below, some interesting pictures of my eye that Dr. Watanabe took. I am wearing a sceral lens in these pictures and you can see the following:

Picture of my eye with flouroscein (a liquid that glows under certain lights). The purpose of using the flouroscein is that it glows wherever there is liquid.

You can see here that the flouroscein is glowing under the entire lens, except at the top part of the eye. This is how you can tell that the top part of the lens is pressing on the top part of my eye, i.e. that there is no room for the liquid to move underneath the lens. Dr. Watanabe will often refer to this as a “thin” area as well.

This next photo is even closer and in it you can see that in the area where there is not much flouroscein, there are little glowing spots. Dr. Watanabe refers to these areas as being “stained”, which I believe is a sign that there could be potential scarring from the rubbing of the lens in these areas. You can see that the most “staining” is around the stitch line.

The last photo is a close-up of the top part of my eye, without the flourscein. You can see in this photo that the blood vessels are growing into the graft a bit and also can clearly see the stitch line and the contact lens edge.

Dr. Watanabe forwarded these pictures to Dr. Rapoza to show him what he was talking about – pretty cool that you can even take these types of photos today and also that my two doctors can communicate this easily!

When I went to see Dr. Rapoza he told he a couple of things:

1. He did not think that the vascuralization was that big of a deal. It was not great, but he did not feel that it posed any major threat. As such, he told me that he thought it would be ok, if I wanted, to keep wearing the sceral lens and to take my chances with the rubbing. As he noted, I really do not see out of that part of my eye anyway.

2. It was not a big deal to take out the stitches. He actually said that he used to remove all stitches at the one year mark, but now usually left them in until something broke. Apparently, with Keratoconus patients, there is not much danger of the cornea “unraveling” as the eye is otherwise very healthy. He told me there was always a danger of this happening and that if it did, I would need to have an emergency procedure, but that in his 20 years of practicing, he had never had this happen on someone with my condition.

3. I also asked him about doing a correction over the graft, i.e. laser surgery, etc. He did not think that this was a big deal at all and told me that if I wanted to, once the stitches were removed, that I could wait about a year (for the eye to settle) and then could have the correction done. Unfortunately, it is not something that is paid for by insurance, but other than for the cost, he did not think that there was any downside. It is interesting that Dr. Watanabe thinks that this is really more of a last resort and Dr. Rapoza thinks it is not a big deal.

4. He let me know that if I have the stitches removed, that it would likely make the fit of a contact easier (as Dr. Watanabe suggested) but may result in some other issues, i.e. somewhat of a stigmatism being added to the eye, as the eye was almost perfectly spherical right now as a result of the adjustments he made to the stitches.

I decided that I thought it made sense to have the stitches removed, as I really would like to get to a point where I have a contact lens that fits me correctly. Dr. Rapoza then proceeded to put a couple of numbing drops in my eye and once I waited a few minutes for them to take effect, he held my eye open with his hand and cut the stitches out of my eye with a surgical blade. Needless to say, it is a little unnerving to let someone stick a knife in your eye when you are fully awake, etc. and also seems crazy that Dr. R has the dexterity to do this freehand, but he did it. Apparently, he made a series of small cuts in my eye around the stitch line and then pulled them out. It was a totally painless procedure and took about 2-3 minutes.
My eye is a little scratchy right now, as he predicted and I am taking some anti-biotic drops to prevent infection, etc. He actually told me that I could wear a lens after a couple of days and even that day if I needed to for driving, etc. I am waiting a couple of days to put anything in my eye to be safe and actually have an appointment this Tues. with Dr. W to have a new contact fitted.

A couple of interesting things to note:

1. When Dr. Rapoza was actually cutting out the stitches, he noted that the blood vessels were actually growing into the graft more than he might have thought at first glance and that Dr. W was a “keen observer” to have noticed this – again, kudos to Dr. W.!

2. I am noticing that I do not see as well at close distances without a lens in my eye now that the stitches have been removed and I am betting this means that removing the stitches added some astigmatism to my eye.

In any event, that is the update. Thanks to everyone that is still reading and those that have sent me messages – it is always great to hear from everyone!
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