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Corneal Transplant – 1 Week On

Night Driving Has Improved - I can now see everything much more clearly.

The big news here is ITCHINESS.   I am not talking mosquito bite-level, but poison-ivy level.   It’s distracting and keeping me awake.  Benadryl did not help it… I’ve got high hopes that Zyrtec will.   I have decided to wear my glasses in order to remind myself not to rub the eye.  At night, I’m still wearing the protective patch.  The doctor says itch is a normal symptom, and will look at it during my appointment this Friday – so long as I don’t have any RSVP (rejection) symptoms.

For those unfamiliar, these are the RSVP symptoms that require you to immediately go to your doctor about potential rejection after initial healing period.  Have your Dr. explain them.

  • Redness that gets worse  (eyes will be red after surgery and should slowly clear, but if they suddenly go red again, take action.)
  • Sensitivity to light suddenly (again, immediately after surgery you will be sensitive to light, but this is an increase later.)
  • Vision (foggy or cloudy, or “curtain” effect)
  • Pain increase (aside from small, normal twinges that everyone has.)

Since I don’t have these symptoms…I have a hunch my itch related to this (wretched) 18mm bandage contact lens and/or dryness.   Friday I have my follow up, and am hoping that this lens will be removed for good.

A few random facts I’ve picked up others might benefit from

  • I also learned that you’re supposed to allow 5 minutes between antibiotic drops and steroid drops, but this is not on the post-op sheet.   Also, one of the staff at Dr. Holland’s office said the drops can be done immediately after one another (wrong.)   I’m going to suggest that Dr. Holland’s staff update this info for future patients.
  • Eye pressure increases often include nausea.
  • Rinsing the eye with preservative-free saline (Unisol-4) feels great.  I lay back on a towel and just flow it in while blinking.

The last thing is that my night driving is transformed.  The dark mornings due to Daylight Savings Time meant that I drove my daughter to school yesterday in the near-darkness.  It was great to be able to drive without huge luminescent blobs in my field of vision.

I found a nice PDF handbook for patients about corneal transplant surgery at University of Michigan’s site.

 
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Posted by on March 16, 2011 in Diary Entries, Recovery, Surgery-Story

 

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DALK Transplant – A photo of my healing eye

There are some who would rather not see healing eye photos, but still want to read the blog, so I have placed the day-5-healing-eye photo behind this cute fuzzy kitten.

The photo shows my eye, and the medical contact lens on it, still red from the surgery.  Compared to a perfect eye it looks rough, but it is healing and getting better daily!

Click kitten to see my healing eye on Day 5

Key to photo:

1) Waviness… it appears that the front of my eye is all wavy, but it is not.  This is a result of the “band-aid” contact lens.  It’s annoying because it affects my vision, but important as it’s aiding the healing of my epithelium.

2) Beautiful little sutures.  1/20th the size of human hair.   I do not have a continuous stitch.

3) The edge of the bandage contact lens – very hard to see.   This is a soft lens around the size of a quarter dollar.

 
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Posted by on March 14, 2011 in Interesting Stuff, Recovery, Surgery-Story

 

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DALK Corneal Surgery – Four Days On

Had I planned better, I would have worn this home from surgery and enjoyed children's reaction.

I continue to recover from my DALK corneal transplant/graft procedure on March 9th, and thought I’d bring my (growing) audience up to date on some highlights.  My wife has been a trooper in helping me with things over the last few days, including a bit of grumpiness and anxiety.

Positives:

  • Eyelid swelling reduced.
  • Eye redness reduced.
  • Milky-white vision is gone.
  • Pain levels reduced – Tylenol helps with a mild burn in the morning.  I am surprised how quickly pain has dropped.
  • The overnight discomfort is near zero.  This is a huge improvement for me. In the past, my gigantic cone would get dry and raw overnight.  I used to have to lubricate every hour or so and the pain would wake me many times per night.  For the last two nights, I’ve slept like a baby without any drugs.
  • No post-7:00 pm pain that I had with scleral lenses.
  • Foreign object sensation with sutures roughly the same as a RGP lens.

Annoyances/Negatives:

  • ITCH!!! The areas around my eyelid and eye socket where the injections were given (I was asleep) became very itchy for a day or so.

    Alas, I ended up with this rather more boring version. I just need a flintlock pistol for me belt now.

    If this happens to you don’t forget you cannot rub your eye. Put your shield on and occupy your mind.   It took Benadryl and it helped a bit.

  • An annoyance is this “bandage contact lens” I was given.  It’s purpose is to encourage healing of the epithelium and improve comfort while the nerve endings are exposed.  It’s the size of a quarter-dollar and does not fit well and makes my vision “wavy” – like looking through a wine glass.  If I turn my head slightly, I see bits and pieces of what’s to come.  This morning, from across the room, I caught a glimpse between the contact lens waviness of my iPhone clock – and it was as if I had 20/20 vision for a moment.   Last night, I glanced at the stars and could see that shortly, I’ll be able to enjoy them again.  This should come out at my next Dr. visit.
  • Light sensitivity.  My doctors said that this was quite normal.  We’ve had beautiful sunny weather in Kentucky and I’ve needed to remain in the shadows.  A dark-black patch (available at your local pharmacy) has been tremendously helpful.  I recommend those having surgery buy one.   Dark sunglasses not enough for me.
  • Steroid and antibiotic drops have a mild, temporary burn – but these are critical to recovery.
  • I caught myself drifting off to sleep once without my shield.   Must not!

My activities have been slowly increasing – I went out to breakfast with my wife and eldest daughter yesterday.  Enjoyed it, but had to wear my dark-black patch to avoid the brightness.   I took my bike for a short spin in the neighborhood on the widest lanes.  Dozens of neighbors out enjoying the Spring day.  I did some minor repairs around the house and tried to help with regular household chores (avoiding those requiring lifting or extensive bending.)

I will check in again in a few days.  So pleased to get the encouraging messages, thanks to all.

 
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Posted by on March 13, 2011 in Diary Entries, Recovery, Surgery-Story

 

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My DALK Corneal Surgery Day

In the pre-op prep area

Around 10:30 AM yesterday, we arrived at the St. Elizabeth SurgiCenter for my DALK procedure.  After a brief wait I was taken back to the prep area where the nurses to sign papers, took my weight and temperature, and checked my vitals.  I was hooked to an automated blood pressure monitor and shortly after, an IV.   My wife came back to sit with me while we waited on some other patients who were getting Cataracts removed to go through Dr. Holland’s busy operating room.  I asked the nurses if they could add espresso to the IV, but sadly, they couldn’t.   (Attn: Starbucks – opportunity?)

Dr. Holland came in and said hi, verified it was my Left Eye we were working on (this is part of their quality control) and then marked it with a pen.   I was asked at least 10 times which eye we were working on, which led to my earlier post.

The anesthesiologist visited, described the process for putting me to sleep for a few minutes during which they would be numbing my eye  (called a “block”).  I was glad to hear I’d be out while needles are around my eye (remember the childhood chant “cross my heart, hope to die, stick a needle in my eye”?  I said bring on the loony juice for that, Doc..  He said they’d have me “sleepy” during the procedure but able to respond to questions, etc.  He also said that should I feel anxious they can add some more relaxation to the formula.  I asked him if I could get a doggy-bag with some of that for occasional home use (I am raising two teenagers, after all.)

Several doctors and nurses visited and asked me many questions, listened to my heart and lungs, and filled out many on-line checklists on the computer terminal.  It was more boring than anything.

One of the doctors came in (I wish I’d gathered names) and pleasantly talked to me about my condition – and offered up much reassurance about what I already knew – Dr. Holland was renowned for his abilities in corneal grafting – indicating that the guy in the next room had flown in from Colorado for a transplant.

Surgery

After a while, people gathered and it was time to get sedated (remember the Ramone’s song?).  I remember them saying they were ready to start the ….. and that’s it – dial tone.  Asleep instantly.   I then woke to what felt like a flurry of nurses and my bed was being rolled into the OR, which was a well-lit room with Dr. Holland and his assistant.   My left eye was in lockdown mode.  Very strange.

Some of the things I remember from the surgery:

  • The placement of the trephine on my eye and the sensation of Dr. Holland spinning it -whee.  This was cutting a precise circular area of my cornea to a precise depth.    Completely painless, but I recall thinking “there’s no turning back now.”
  • The big bubble being inflated.  This caused my blurry world to go snow white all of a sudden.  Very strange.
  • The dissection of the cornea – lots of blurry lights and a slow removal of the whiteness.  Completely painless.
  • Discussions between Dr. Holland and his assistant about a micro perforation of my Descemet’s membrane.   *(More on what happened later – Dr. Holland filled me in in the follow up visit.)
  • Dr. Holland requesting right and left handed scissors as he cut the outer radius of my cornea free.
  • Dr. Holland requesting the donor cornea.   This was a special moment that I knew was coming.
  • The beginning of suturing.  And some short-term pain that the anesthesiologist remedied on the fly.
  • The application of a large contact lens – which is meant to reduce discomfort while the epithelium heals.
  • Dr. Holland saying – “all done, beautiful job.”

Midway Through the Surgery, A Complication

I learned during my follow up that the surgery took twice as long as usual because of the microperforation of my Descemet’s membrane caused by the scar tissue that severe Keratoconus causes.  At this point, many surgeons would have immediately converted to PK and done a full-penetrating graft.  Dr. Holland’s skill in dealing with this (>50 DALKs per year) came into play and he was able to specially dissect around the perforation and save my Descemet’s membrane.  The implications of this are faster healing time, near zero chance of rejections, and a graft likely to last the rest of my life.   All of the work in finding Dr. Holland, the trips to Edgewood, and the homework paid off in those few minutes.

Because of the unexpected extension of the procedure, as suturing began, my anesthesia began to wear off (I’m notoriously resistant to anesthetics, my dentist has to shoot me twice as much as most patients.)   I was so sleepy that all I could do was moan – Dr. Holland would apologize to me “Sorry about that.”   After a couple of these, the anesthesiologist added more pain medicine to the mix and all was well soon – but not immediately.

It was pretty uncomfortable for a few minutes before that stuff got into my system.   It didn’t last long, but I would like to have known some sort of signal other than vague moaning.   Later, they said I should have let them know – but I was terrified of moving during surgery and disrupting the precise activity Dr. Holland was doing.   So ask your surgical nurses or anesthesiologists what you should do if you feel pain during the procedure.   For most people, this would never be an issue.  I was just under the knife longer than expected for the drugs administered.

After the procedure. Shielded and Caffeinated

Success!!

Dr. Holland’s words will echo for a while… “All Done, it went beautifully.”

After we were done, I was bandaged with a shield, taken somewhere to rest, and eventually transferred from a bed to a recliner in a room where Heather was waiting.  It was nice to see her smile.   I told her “they did the DALK successfully, it went well.”  or perhaps I said “Led Zeppelin planted some Pansies on our Garage Roof” – hell if I know, I was flying high.  I had poor balance and was pretty sore.  I lost all track of time.

After missing my morning coffee or any Food for a while, I was also getting a caffeine / food headache.  The nurses then offered me possibly the best tasting Coke I’d ever had in my life.  They also gave me some medicine for my headache, and then I was  led to the men’s room for additional relief.  Soon, it was time to say goodbye, and, 3-4 hours after arriving, I was wheeled out to the van and we headed back to Lexington.

Get Ready for Some Discomfort, But It Doesn’t Last

After leaving, things got painful in and around the eye and I would have described it at the 8 out of 10 level for a short while.  This should be expected – and you should plan on staying on a comfy couch or bed for the rest of the day.  Have help around to bring you what you need.  It stands to reason things would hurt: your eye was just stuck, sliced and sewn up.  It was manipulated like it had never been.   Manipulation includes the clamp that holds it open, tons of surgical instruments, endless poking, and several major injections.   I wonder if the pain management could have been better perhaps with narcotics – but the nurses just told me to take Tylenol.   Tip: Ask your nurses if you can have something stronger just in case.

But take some comfort.  It felt far better after 5-6 hours of rest – and by the next day, the soreness was more irritating than anything.   It is worth it and a small price to pay for long-term better vision. Just don’t expect this to be a cake-walk the first day.

My eyes are tired, so this post will end here.  Next: My follow up.

Please make sure to read the entire diary and get the full story.

 
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Posted by on March 10, 2011 in Diary Entries, Recovery, Surgery-Story

 

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More Keratoconus Questions Answered

Okay here are the keratoconus questions I brought with me to my second consultation along with the answers I received (aggregated from all answers, but mostly from Dr. Holland.)   After the appointment I sat in the car and wrote down every answer I could remember.  And here are the results:

Q: Have  I tried all available contact lens ideas?  [I have a semiscleral lens]
A: Yes, I’d say you’ve reached the end of that option with the scleral lens.  Most people never get to a scleral solution.  You have advanced keratoconus, very steep cornea and very thin cornea… the lenses you have are the most comfortable that are possible.  If this isn’t working, you’ve extinguished your options.

Q: Does my Scarring rule out most novel ideas?  Is my scarring that bad?
A: Yes, your scarring is centered and cannot be fixed.  Most other things, such as cross-linking, corneal rings, etc. will not help.  Also you have so much steepness that these options would not flatten your cornea enough no matter what the scarring.  They can work for mild cases. If your right eye started showing KC, we might consider those approaches.

Q: What about Nerve Endings?  Right now, my eye feels like it has a bad sunburn.  What happens with your eye sensation after the graft?
A: At first there will be none, but they will grow back in 3-4 months.  Your “burning” pain is coming because your steepness prevents a good tear film from forming – you have dry eye all the time.   The center of your cornea is drying out, and this is part of the problem.

Q: Corneal neovascularization – do I have it?  Are there any pre-graft procedures I need to address it?  Are the semi-sclarel lenses and their “blanching” causing this?  [why I was concerned]
A: No, you have only superficial case.  No worries there.  You have minimal vascularization.  It becomes an issue when you have two or more quadrants of vascularization.

Q: What should I expect in terms of vision compared to what I have now?   (bad)
A: It’s hard to tell – some patients see better right away.   Given the level of steepness and scarring you have, I think you’ll see better pretty soon.  You may be able to try a contact lens or glasses prescription within 3 months.  We may take sutures out bit by bit, but typically we wait until a year’s passed.  After about a year, we may want to do a laser procedure to get rid of residual astigmatism.
(postscript 3/17/11:  My vision was immediately better – dramatically so….  see later posts for more detail.)

Q: I just keep reading about problems with cornea grafts on the web.  Is it just that they are the only ones that post?
A: Yeah.. but there’s another thing.  The numbers are skewed by non-compliant patients.  That is, 22-23 year olds that don’t follow the post-op regimen – drops, suture care, etc.   You are old enough to know that this is important, and I expect you to do really well.  With someone like you, we’re looking  at a 97-98% success rate.  Also, always better to ask us than read online.

Q: I am concerned about rejection – I read so many stories online
A: Well, not with DALK.  You have to almost try to get rejection with DALK for it to happen.    You’ll see studies that show 5-7% rejection rate, but the numbers are affected by non-compliant patients.  With a healthy eye, and a compliant patient, we’re looking at less than 3%.

Q: Could you tell me about graft lifetime with DALK and PK?
A: With DALK, you should be good for life.  If we perforate, and convert to PK, the lifespan can be 15-20 years.   Your steepness and scarring mean the odds are probably 70-80% of us being able to successfully complete a DALK.  (postscript 3/17/11:   DALK successful – but barely – thanks to Dr. Holland’s skill, we did not convert to PK) As young as you are, you’d expect to have a second graft if we do PK.  With a PK, 70% of the epithelial cells are lost in the first 5 years.   With a DALK, you’ll lose around 10-11% of the cells in the first year, and then it stabilizes.  The vision is the same with both.  You would expect to have another PK at 60 years old or so – and the rejection rate would be higher.

Q: What’s going on with artificial corneas – by the time I’d need a second PK?
A: The problems with these are pretty significant, especially considering the success of normal grafting.  Then news keeps talking about them, but the success rate of donor corneas just makes it a no-brainer.   They have way more glaucoma, way more infections, etc.   The eligible cornea donors is so much greater than the current donation rate – and we use corneas up to age 75 in the USA (Australia even older.)   For DALK, the age of the donor doesn’t really matter.

Q: Do you order your tissue “PK ready?”
A: Yes, in every case.  (he was impressed that I even know what this meant.)

Q: If I have a problem at home (1:15 hours away) would I rush up here or get with someone in Lexington?
A: I know many of the guys down there, but most likely you’d just come in the next day.

Q: BIKING and surgery – I bike commute – will I be able to?
A: You’ll want to give this a week or two, you’ll want to protect your eyes really well.

Q: What about post-op astigmatism?
A: We always try to avoid it, but there will be astigmatism with a new cornea.  It’s impossible to get the donor cornea perfectly positioned.    For you,  refractive surgery will be the likely best option to finalize that vision improvement.

Q: How many DALKs have you done?   (dear reader, do not forget to ask this question.)
A: We’ve been doing it routinely for around three years, and I do over 200 grafts per year – 60-70 are DALKs.   (note:  This is a LOT of DALKs)

 
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Posted by on February 5, 2011 in Dr. Visits, Pre Surgery, Surgery-Story

 

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Keratoconus Consultation #2: Dr. Edward Holland – Corneal Specialist

I just finished my second informational meeting with Dr. Holland and must say it was excellent.  I cannot begin to describe the differences in the staff between the Corneal Surgeons’ staffs between Lexington and the Northern KY team.  They are more professional, friendlier, and more knowledgeable at every step of the way.  I am not going to call out the Lexington surgeons by name here, I’ve no intent to stir things up, but if you’re in the area and needing Corneal work, you owe it to yourself to visit more than one.

Off to Edgewood.

After “working” half of a day in Lexington, I grabbed the GPS and an audiobook and made the 1:15 drive to Edgewood, KY (essentially a suburb of Cincinnati on the Kentucky side of the river.)  After a yummy lunch at Panera and a few minutes checking email on my laptop, I went to the office.  I saved their office as a “Favorite” on the GPS because I have a feeling I’ll be coming here a few times!

Checking in was the usual – insurance card, verifying contact information, etc. at the desk went quickly and I noticed that the waiting room was full of people.  I also noticed that the average age of people there was well, well older than me – possibly by 25 years or more!   I sat down to read my RSS feeds and noticed that they had a very strong public WIFI for us.  Nice!  I barely got the first one on the screen before they called my name .  I felt mildly guilty, like you do in the “Fast Pass” line at Disney… until I realized that the other patients were there to see the cataract specialist, not the cornea doctor.

Feelings During the Visit

I realized as I walked to the back rooms that my anxiety about today had turned into a sort of strange excitement.  Still concern, but I felt like I was doing the right thing and taking steps to make life better – not only for me, but for my family who has to deal with my grumpiness when my eyes are hurting.  Dr. Holland’s reputation and the staff’s treatment bolstered this feeling.

Dialated Pupil - Kerataconus

Staff Knowledge about Keratoconus is Critical

I sat and spoke with a technician, who asked why I was there – did a basic vision test, including a pin-hole check.  .  I quickly established a great rapport with her and realized that she was not only smart about corneas, but it seemed more informed than the doctors I’d met about my condition earlier in Lexington.  She knew a ton about the transplant – having sat in on many operations, including the DALK procedures.  I was able to get a whole different perspective on the surgical process, etc. from her.   She also wanted to do a topography – and I told her my cone was too steep for the equipment, but we did it anyway.   Sure enough, the computer choked on my data as usual.  I’ve not had a successful topography since 2003… the equipment just isn’t able to help after a certain point.

My eye pressure was checked and they dilated my eye to examine the retina and optic nerve.  Doing it only in my left eye made me look kinda cyborg-like, and my daughter got a kick out of it.   All was golden – my eye is very healthy.  Except for that damn cornea.

Find a Great  Cornea Specialist… even if you have to drive or fly there!  Go to someone who does 50 or more grafts annually, preferably a mix of DALK and PK who has surrounded themselves with knowledgeable technicians and staff.  Your eyes are your window on the world – this is not the time to compromise.

I also ended up talking to a good, retina-surgeon friend on my front porch last year  – and she made quite an impression with her recommendations… “don’t compromise when it comes to cornea surgery, period.”  So I’ve learned a lot.

Bottom Line

If you have Keratoconus, and feel that the Doctor is treating you like the rest of his patients or that the technicians don’t understand the disease due to the “rarity” you owe it to yourself to find another expert, even if you have to drive or fly

 
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Posted by on February 3, 2011 in Dr. Visits, Pre Surgery, Surgery-Story

 

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Keratoconus Consultation #1: Dr. Edward Holland – Corneal Specialist

image: fromereye.com

Once I felt that a transplant was my only viable, long-term option, My wife and I went to Cincinnati Eye Institute to visit Dr. Holland.  I brought her along because I thought they might dilate my eyes, plus it’s nice to have a second set of ears.  I’d been to a few other surgeons in Lexington – some highly regarded – but for some reason I felt less comfortable with them and their answers.

Dr. Holland impressed me from the handshake forward.  He was well versed and spoke with confidence about the situation.  He seemed quite comfortable with new techniques, such as DALK, where my other surgeons had said that PK was the way to go.

As we began, Dr. Holland pulled out the eye chart and covered my right eye.  I just sat there, looking at the blur.  “That’s what I thought” he said.  “Contacts are not cutting it for you anymore.”

I had formulated a lot of questions for him…

Q: Is the Femtosecond laser promising for me – should I postpone my surgery until this is more available in the USA?
A: It is promising for making the cut more precise, but few have it right now.  The jury’s still out on how much it helps over an experienced surgeon.

Q: I’ve heard good things about Deep Anterior Lamellar Keratoplasty (Is a DALK surgery possible for me – or will Penetrating Keratoplasty be the only option?
A: I think you have an 80% chance of a successful DALK.  That will be our goal, but we can convert to PK if needed.

Q: Other corneal surgeons I spoke with seem to avoid the DALK option, saying it’s inferior visually.  Why?
A: Sometimes it’s a matter of practice.  You get comfortable with a way of doing things.  PK is very good, and done well the outcomes are great.  DALK takes a lot of practice.

Q: Does my eye look generally healthy?
A: Yes.  I don’t see any other underlying issues.

Q: Why do I feel pressure/aching occasionally?
A: With the poor vision, your eye is probably in a constant strain to focus.  That can cause aching.

Q: What is the reason for the constant “sunburn” feeling I have?
A: The epithelial layer of your eye has a lot of nerve endings.  When it’s stretched or rubbed, it can feel like stinging or burning.

Q: Are “intacs” an option for me?
A: No, because you have too much scarring.   They can flatten the cornea, but the scars would still be there and you’d be unhappy.

Q: What is the success rate with eyes like mine?
A: Excellent.  Kerataconus patients are usually the happiest with a transplant.

Q: Should I wait?
A: It’s up to you, but if you want to go forward, we need a month’s notice.  There are complications if you let advanced KC progress also.  Unfortunately, it doesn’t really get better.

Q: What’s the healing time?
A: Around a year.

Q: Is there a chance of acute hydrops?  Ruptures of other types?
A: Probably not – and that is treatable.

Q: What’s my potential visual outcome… will night driving be better?
A: Our goal is 20/20 without correction.  After healing, you should be far, far better than you are now.

Q: Is it possible that there are better scleral or semi-scleral lenses that would help me avoid surgery?
A: There are options, such as Boston’s $5000 lenses… but your scarring is going to always get in the way of good vision.

Q: What about rejection?
A: DALK reduces the risk of rejection – but it happens.  Almost all the time it’s treatable if you take care of it pretty quickly.

 

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