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DALK Transplant – One Year On

04 Mar

photo by Celia Clark

March 9th is the anniversary of my DALK transplant in my left eye, the subject of this blog.  I’m posting a bit early as I have a few moments.  As of one year, I am thrilled that I had the surgery – and forever grateful to the donor and their family.  I’m certain that the posts will slow down now unless I have good reason to post – changes, vision, etc. but I want to thank you for being a part of my story.  I will still monitor for comments and do my best to offer a layperson’s response.  When reading the story – try to go back in time and read the older posts first.

I will be returning to Dr. Holland in a month or so, and I think he’ll be asking me if I was fitted for contacts.  Thus far, I have not built the courage to put anything on my grafted eye.  Soon I will.  I am going to get a new glasses prescription first from my regular eye doctor.  It will be amazing to be able to see with glasses, and I’m thinking that will prompt me to move forward with a RGP lens (Dr. Holland’s recommendation.)  I’m in the primary rejection period for DALK – so am extra vigilant for the RSVP symptoms.  So far, all’s well.

One little aside:

Sometimes we all just forget how precious life is.  How precious love is.  My DALK eye has not forgotten how to shed a tear.  I’m sure those tears are a combination of my own and the loved ones of the donor.  Take today and give someone in your life a hug or a thank you.  It’s easy.  Sign your donor card.  That’s easy, too.

I want to thank my wonderful wife Heather for all of her support, both before and after the surgery.  She was my crutch when I was in pain and always was there to give me the support that only a truly caring wife could give.  She was awake with me that night after surgery when I thought everything was going wrong.  We went on a date recently – at night – and I could see her clearly in the dim dinner light.  Candle fumes used to burn like fire.  Not this time.   I drove there and back – dark outside.  The eye didn’t even come into play.  It was just our date.  This is the combined gift of the donor and my good fortune for meeting her.

 
16 Comments

Posted by on March 4, 2012 in Diary Entries, Recovery, Surgery-Story

 

16 responses to “DALK Transplant – One Year On

  1. Leslie Albrecht

    March 7, 2012 at 10:44 am

    Hi Scott,
    I have some questions for you about the transplant. I saw Dr. Holland last year and am considering a transplant due to kc. I am making a second consult appointment to get answers to some questions. I am so grateful for all the information you have posted here. Should I post my questions here? I have specific ones I would like to ask about before seeing Dr. Holland again. I am happy for your success. Thank you, Leslie

     
    • Scott

      March 7, 2012 at 10:59 am

      Well, I like the questions to be posted so that everyone can benefit from my answers. And always remember that I am not a doctor. Dr. Holland is the one to ask questions to, or to verify my opinions.

      I’m considering converting this site into a “running FAQ” where I take one question per week or so and post an answer, possibly getting Dr. Holland to chime in, too. Not there yet, so fire away in your reply.

       
  2. Leslie

    March 7, 2012 at 3:04 pm

    1. Is there a better day and or time of day to make an appointment at Blue Ash to see Dr. Holland?
    2. Are you still on meds and if so what kind and how often daily? ( the reason I ask is because I don’t have coverage for meds except generic and long term cost can be a factor)
    2. How much better is your vision? Could you function without contacts? I really would like to just wear glasses.
    3. Is your night vision a lot better?
    4. Is your eyelid still droopy?
    5 Do you have any pain now in transplanted eye?
    Basically Scott, I just want to make sure it’s worth it. I can function with only one eye but if something happens to my right eye I would be legally blind. It seems like a lot of appointments to Cincinnati, I live in Dayton and my husband would have to take off work and drive me. My gut tells me to go for it but I’m scared. Thanks again!! Leslie

     
    • Scott

      March 7, 2012 at 3:18 pm

      1. I always make appointments as early as possible.
      2. Yes, Restasis. It is pretty expensive. You may not need it. I also use Combigan to keep eye pressure down, but that will end soon. Only 8-10% people need pressure reducing drugs.
      2a. My vision is improving slowly, but I am still nearsighted (expected.) With correction, it’s wonderful. I’ll never be without contacts unless I get PRK (open question.) Glasses should be fine if your astigmatism is under control.
      3. 100% better – I go out and look at the stars sometimes just to see them.
      4. My wife says it’s getting better. I still notice it in pictures. This Fall, I may have a minor cosmetic lift. Dr. Holland seems to think it’ll fix it self.
      5. Perhaps 1 day in 20 I’ll have an eyelash feeling. Dr. Holland says it’s likely mucus wedged under the stitch. It goes away quickly. I’m only slightly sore after stitch removal – tylenol helps. If my eye gets really dry it hurts just a bit, but both eyes. I use Systane Ultra liquid at night and it works great.

      IT IS WORTH IT. Yes, you’ll know the route to Dr. Holland’s office by heart, and you’ll spend a fair bit of money.

      As far as protecting your eye you are correct. Buy some really nice safety glasses ($40-50) that are comfortable and wear them anytime you do yard work, ride bikes, even cook or play with pets or kids. You need to get in the habit of protecting your eyes. Your right eye because it’s your crutch and your other eye will be fragile. I even wear Tifosi clear glasses when hiking in the woods (branches.) You cannot be too careful. Get your doctor to write a prescription for some safety glasses and get the nicest ones you can get.

      I was scared before but now that it’s over, I wish I’d done it many years earlier. It’s not risk free – but nothing in life is. And when I was thinking this way – looking through my complete blur on the left eye, I figured that even if the very worse thing happened, I would not be much worse off. Don’t go on wondering if you should have done it. Dr. Holland is the best. Seriously. I recommend you proceed and get it behind you.

      You cannot, I repeat, cannot partial dose or skip medications. Compliant patients are many times more successful. You need to do the drops perfectly, every day. Follow instructions perfectly. And don’t be afraid to go see Dr. Holland if you think something’s wrong.

      Last thing: The few days after surgery are rough. You should be ready for that, and know that it gets dramatically better quickly. Have someone there to pamper you. Pain meds, favorite music, visits from friends. It gets better and fast. You will not want to do anything except sit in a comfy chair. Just get high on the meds and float through it while your eye recovers. You can see how it might look by going through my blog and clicking on the kittens.

      Don’t hesitate to ask more questions. This site gets a few hundred visitors per day and lots are going through what you are. So answers here are likely helpful. But DO NOT use my advice as if it were medical advice. Take my ideas to Dr. Holland and verify that they are right for you. Please.

       
  3. Leslie

    March 8, 2012 at 10:15 am

    Scott,
    I can’t thank you enough for the info. Still have a couple of follow-up questions.
    1. How many times a day do you use Restasis and will you be on it for life?
    2. So with glasses now, do you see a lot better? What if you couldn’t wear contacts, would you still say (for you) the surgery would be worth it just wearing glasses and with no PRK surgery?
    3. Just trying to get an opinion if having surgery and only wearing glasses still makes it all worth while for someone with astigmatism who doesn’t get the astigmatism fixed. I too have that issue.
    4. I am confident that Dr. Holland is a wonderful surgeon but you often get more insight from a patient and I understand that each case if different.
    5. By the way what is PRK?
    6. Did having depth perception restored make driving safer and life in general better?
    You are really helping a lot of people with this site!!! Thanks for all your help and time. Leslie

     
  4. Scott

    March 8, 2012 at 10:40 am

    Leslie – you’re welcome.

    1. Twice – I use one little tube per day as it has around 8 drops in it and you really only need 2-3 in the morning and 2-3 at night. I put the tube in a clean location for evening after opening it in the AM ( I have a little container in my bathroom drawer for it.) I not know how long I’ll have to use it. But it’s important for tear creation as well as preventing rejection (I’m not sure why it prevents rejection – great question for Dr. Holland.) It burns a slight bit when you put it in, but just for a moment and it’s minor. I just tell myself it’s a sign of it penetrating my eyeball. 🙂
    2. I have not got new prescription yet for glasses. I’m getting it next week. I’m basing my correction on the eye test device at the Dr. office. But yes, if glasses were my only option, I would still do the surgery. I was in a lot of pain with KC my cone was so steep. And at night my world looked like a rainy windshield.
    3. I really cannot answer that. There are options for astigmatism correction with PRK laser post-graft (+1 year minimum.) Your doctor will have to tell you.
    5. It’s a laser surgery to alter the shape of the cornea. very precise.
    6. yes. Depth perception much better and improving all the time See my post about mountain biking. http://corneanews.com/2011/08/12/little-things-3-ability-to-really-get-back-into-mountain-biking/

     
  5. Leslie

    March 8, 2012 at 2:17 pm

    Hey Scott,
    I just made appointment for my second consult with Dr. Holland. His first available appointment was May 1st. I will have a list of all my questions, thanks in part to you, ready this time. I will post a follow-up after the visit. Thanks again!!! Leslie

     
    • Maria

      March 9, 2012 at 6:59 pm

      Hi Leslie,

      Just read all your notes to Scott…his blog offers a tremendous service…I hope you realize that Scott! I too had a DALK done with Dr Holland this past December. It truly is not bad at all. I think the most difficult thing is that it is a very slow recovery process. Last month, I had my first 2 stitches (24 total) removed. I go on the 20th of this month and hope a couple more come out…possible leading to some improved vision. Dr Holland is very happy with my recovery he is very reassuring regarding my outcome.

      If there are any other questions I can answer for you, I’d be more than happy!

       
      • Leslie

        July 30, 2012 at 2:05 pm

        Hi Maria,
        Would love to know how you have been doing. Haven’t seen any updates since March. Is all ok? Thanks Leslie

         
        • Scott

          July 30, 2012 at 2:13 pm

          Ignore this comment. I didn’t know you were talking to Maria.

           
        • Maria

          July 30, 2012 at 3:40 pm

          Hi Leslie,

          Yes everything is going great. Just saw Dr Holland last week, I believe I’m down to 8 stitches. He says the graft looks great…just need more time and more sutures removed before my vision will improve even more. I must say it is a VERY long process, but so far, well worth it.

          If there are any specific questions you have for me just let me know. Seems like Scott did a great job of explaining the procedure and recovery. He is ahead of me as far as time, and seems to be doing great as well.

           
  6. Scott

    March 13, 2012 at 12:05 pm

    Hey guys, I added a chronology to my website. Making it easier to read from start to finish the stages. Just click on the new link on the top.

     
  7. Nige Lycett

    March 14, 2012 at 11:20 am

    Hi Scott, excellent updates, hope things continue to improve for you.

    I am almost at month 4 post graft, I can see through the graft but things are very blurry, I also notice at night that artificial light sources cause some flaring, not as bad as KC.

    Wondered if you had any similar symptoms early days after your graft.

    I am also on pressure lowering drops with reduced steroid drops…. Maxidex and Cosopt.

    Not had any pains or reddening, so touch wood well on track to better vision.

    Your recent eye test and the revelation that one lens gives you vision is what I keep dreaming about.

    Next apt 21st March (UK – National Health Service)

    Best of luck mate

    Nige

     
    • Scott

      March 14, 2012 at 11:36 am

      Nige – yes, I had some inconsistent optical aberrations, especially months 3-6. I was told that this has multiple causes, but primarily “radically dynamic” astigmatism. The graft’s shape is fluctuating as tissue forms, as eye pressure adjusts and as sutures are adjusted. Nearer the end you’ll converge on the best possible shape for your cornea – and then corrective lenses or laser surgery will seal the deal.

      Patience is required as the suture roulette continues. I was better able to bear low vision longer term because I had a very good right eye, saw better and was pain free after the first week. I cannot explain how much my eye hurt with KC. It was ruling my life.

      I also hope you’ll have that moment when the Dr. flips down one more lens and things snap into focus. I actually welled up a bit with emotion. The vast majority of patients have that experience – so just keep following Dr.’s orders and protect your eye as it heals.

       
  8. Debbie

    July 3, 2013 at 2:53 pm

    Hello Scott, & Leslie
    Scott, you have NO idea how instrumental YOU have been in moving me forward in the acceptance of what 3 cornea surgeons, PLUS Dr. Holland have all told me. yep, CT for me!
    It was this blog that gave me the ability to make my decision between two surgeons that I really both liked…I see Dr. Holland again on 7/16/13 and plan to get on the schedule.
    Leslie, I too live in Dayton! Have you had your surgery yet? … I would be interested in your updates as well.
    Thank you again Scott… I’m such a fan! and so very happy for you visual success!

     
    • Scott

      July 3, 2013 at 3:22 pm

      Awesome! Good luck with everything!

       

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