Latest / When Life Gives You Lemons / A Lifetime With Corneal Dystrophy And What It Takes To Keep Going

Transcript

A Lifetime With Corneal Dystrophy And What It Takes To Keep Going · When Life Gives You Lemons

• 0:00
  Kevin: Welcome to our podcast when life gives you love means.
• 0:05
  Kevin: I'm Kevin.
• 0:06
  Kevin: And I'm Palmy.
• 0:07
  Kevin: We consider ourselves disability advocates and intend to highlight some disability issues and things we find interesting that we frequently encounter when we're out and about.
• 0:19
  Kevin: Also, some history on disability that we find interesting.
• 0:22
  Kevin: This year we're going to include more of the interviews of the people that the disability affects.
• 0:30
  Kevin: We hope you enjoy it.
• 0:33
  Kevin: Hello, everybody.
• 0:35
  Kevin: Welcome back to our podcast.
• 0:38
  Kevin: We have a special guest.
• 0:41
  Kevin: We're going to be talking about corneal dystrophy.
• 0:47
  Kevin: I'm going to kind of gloss over the condition.
• 0:50
  Kevin: He's going to act as my fact-checker, and we'll let you know that's a complete BS, and he'll set astray at that point.
• 1:03
  Kevin: But we're not going to go into a lot of detail about the condition.
• 1:09
  Kevin: We're going to go into deep details of how it affects his life.
• 1:15
  Kevin: What he can and cannot do or has to do differently.
• 1:23
  Dennis: So would you like to introduce yourself and uh sure.
• 1:29
  Dennis: My name is Dennis Wong.
• 1:31
  Dennis: Um, I've had corneal dystrease since I was very young.
• 1:37
  Dennis: It was diagnosed young.
• 1:39
  Dennis: Um since I was about eight years old, was when I first knew about it.
• 1:44
  Dennis: I'm now um 64, and so that's given me a lifetime of understanding the what it does to me and how it affects my life.
• 1:59
  Kevin: Okay, Daniel's lucky regal over here.
• 2:03
  Kevin: Daniel actually describes us better, but corneal dystrophy, according to my research, is a group of inherited disorders affecting cornea's clarity and structure.
• 2:21
  Kevin: And it sounds to me like there are actually several different types, or more than one type anyway.
• 2:32
  Kevin: The cornea matters because, especially as Dennis was describing earlier, the clarity of his vision depends on how messed up it gets by the crystals that they grow on, right?
• 2:50
  Kevin: Is that correct?
• 2:51
  Kevin: That's correct.
• 2:52
  Kevin: Okay.
• 2:53
  Kevin: And they don't really uh mention anything about that.
• 2:59
  Kevin: Then it just goes into types of corneal dystrophies.
• 3:04
  Kevin: Okay, epithelial dystrophies or stromal dystrophies or endomithelial dystrophies, which is giving some alternate names as Pix dystrophy, posterior polynorpheus dystrophy.
• 3:29
  Kevin: Do you need those room, Bill?
• 3:32
  Kevin: Which type you have?
• 3:35
  Dennis: No, in fact, I I I know my my doctor and my sister, she's an ophthalmologist, she knows which type of dystrophy, but I've never really all I've known it is as a cornea dystrophy.
• 3:49
  Dennis: I've never gone into specifically what type of dystrophy it was.
• 3:55
  Kevin: I don't think it really matters.
• 3:57
  Kevin: Okay, what do you outgrows from what you've described?
• 4:02
  Kevin: It kind of affects your vision the way macular deterioration does, in that your field of vision gets progressively worse as the corneal scars, I guess, progress in your eyes.
• 4:24
  Dennis: Yes, so the actual dystrophy is like crystals underneath my cornea, and you know, the pressure that it puts on the cornea, it scratches it, and it causes a buildup of scar tissues.
• 4:43
  Dennis: And so, like you said, it's the vision with getting limited over time.
• 4:50
  Kevin: Okay, as far as symptoms and early warnings, it's got listed here blurter fluctuating vision, flight sensitivity, blur, recurring corneal erosions, which I'm not sure that's something you would notice.
• 5:16
  Dennis: Yes.
• 5:17
  Dennis: Yeah, you're my doctor would, but for for me, when I have what like I would call an attack, it's when that pressure against my cornea actually breaks, the light actually lets through, and I cannot see, I cannot function when I have this attack.
• 5:43
  Dennis: And so it's and it's where I would have to basically to recover from it, I would have to lie down, close my eyes, and let it heal over.
• 5:56
  Dennis: And so usually when I have an attack, I it would be like for part of a day where I just have to not go to work or not go to school and just rest my eyes and let it heal, then hopefully it'd be within the day, I would be all right, but my vision is I can notice the sensitivity to light and being able to walk outside and function properly.
• 6:31
  Dennis: I can see that sometimes after a very difficult attack, I I my vision is noticeably worse.
• 6:40
  Kevin: We talked about this briefly before.
• 6:42
  Kevin: You did not drive, am I correct?
• 6:45
  Kevin: That's correct.
• 6:47
  Kevin: Okay, how long has it been since you drove?
• 6:53
  Dennis: Let's see, I started driving, stopped driving by the time I was about 30 years old.
• 7:02
  Kevin: Wow.
• 7:03
  Kevin: Did you keep working at these job granting?
• 7:08
  Dennis: Yes.
• 7:09
  Dennis: What I ended up doing was depending on my wife who would take me to work, or I would use carpools.
• 7:18
  Dennis: So wherever I worked, I had a carpool, and someone would take me to work and I would pay them to basically carpool, and that worked really well, you know, until it reached a point where I couldn't function.
• 7:38
  Kevin: Okay, one of the uh things that go sit when we're talking terrible for was uh okay, how long have you lived here?
• 7:52
  Dennis: How long have I lived here in Cape Girardeau?
• 7:54
  Dennis: Yes.
• 7:55
  Dennis: For about five years.
• 7:57
  Kevin: Okay.
• 7:58
  Kevin: There is an organization, I'm not saying that you can't use now, but you may be able to use in the future if that path leads you back to work.
• 8:11
  Kevin: Great.
• 8:13
  Kevin: But they are specifically for taking disabled people to and from work, and it I don't believe it costs anything, uh, but there will be, of course, certain days that pop up that your wife is not able to drive you to or from.
• 8:37
  Kevin: And it's nice to know there's something like that to fall back on.
• 8:43
  Kevin: I'll get you their information after down here.
• 8:48
  Dennis: What is the organization?
• 8:52
  Kevin: The organization.
• 8:53
  Kevin: Let me think for a minute.
• 8:56
  Kevin: The organization is called Sadi, which is an Acronym Southeast Missouri disability incorporate that out the link.
• 9:09
  unknown: Okay.
• 9:09
  Dennis: I've heard of Sadie before.
• 9:11
  Dennis: I contacted them to see about different equipments, you know, and see if they subsidize or they know of different equipments.
• 9:23
  Dennis: Um so thank you.
• 9:25
  Kevin: I yeah, they used to uh provide people with uh transportation to from work.
• 9:33
  Kevin: I know that because I called them up, trying to get a ride to and from a doctor's appointment.
• 9:44
  Kevin: They said, you know, we're really only focused on taking people to and from work.
• 9:51
  Kevin: So yeah, uh got my education there.
• 9:56
  Kevin: Um used another source, but anyway, I hope that uh is of use to you in the future.
• 10:05
  Kevin: Your life experiences describe for me uh the listeners a little bit about the growth crystals and how that limits your vision and your eyes, the pain you corporate in that as well.
• 10:23
  Dennis: Well, like there's nothing I can do to eliminate the crystals.
• 10:27
  Dennis: They were inherited.
• 10:29
  Dennis: So my sister and my dad both experience it, but for whatever reason, I had more of a more chronic case.
• 10:41
  Dennis: When these crystals happen, it's it's like I said before, it's similar to an attack.
• 10:50
  Dennis: And so when the I never know when the attack is gonna happen.
• 10:56
  Dennis: You know, um, I do know what it tends to happen when I'm stressed, when there's a lot of pressure that's being put on me.
• 11:06
  Dennis: I do try to do some preventative things, like eye drops and lotions and things like that for my eyes to help out.
• 11:15
  Dennis: But when the attack actually happens, I basically kind of shut down.
• 11:22
  Dennis: You know, I I don't feel like I can do anything with my eyes closed.
• 11:28
  Dennis: So even cooking, even even walking, even reading, you know, it's so painful that I can't even open my eyes and see what's happening.
• 11:43
  Dennis: And so the default is okay, just lie in bed and wait till it recovers.
• 11:50
  Dennis: And sometimes it could be just a couple hours, but sometimes it's so strong that it takes the whole day just to recover.
• 12:02
  Dennis: So, like if when I was in school, there was nothing I can do other than talk to my co-um co my classmates and say, Did you take notes?
• 12:15
  Dennis: At work, it's making that emergency call and saying I need time off.
• 12:21
  Dennis: And so that was frustrating because I had no control over these attacks.
• 12:28
  Dennis: And so I couldn't, even though things may have been urgent at work, I would tell my boss, and 75% of the time they were understanding.
• 12:41
  Dennis: There were 25% where I just had to still try to pull those through it.
• 12:49
  Dennis: Yeah, and that became hard.
• 12:52
  Dennis: You just did the best you could with the circumstances.
• 12:57
  Kevin: Now, is it uh a condition where the lighting environment helps you or hurts you?
• 13:07
  Dennis: Environment definitely plays a factor.
• 13:10
  Dennis: If you fell around like heavy equipment and where the lighting is not very good, it's relatively dark.
• 13:23
  Dennis: A lot of my work took me to machines, and I work with people, but sometimes working on machines, they're not located in the most lit area.
• 13:37
  Dennis: The lighting would be poor, and so being able to read the instruments, being able to know where the proper settings is, or read the settings, or read the dial became really frustrating.
• 13:54
  Dennis: It at times actually where I had to take my phone, take a picture of it, and then enlarge in it just to see.
• 14:04
  Dennis: Whereas so my what I was doing, what should only take just a couple seconds to do, took much, much longer.
• 14:16
  Kevin: Yeah, I run into that myself, just like answering the door once putting the knocks on.
• 14:23
  Kevin: Okay, I've got to get the arms on the waist there down because I easily have them up.
• 14:29
  Kevin: I've got to back up, making sure I don't run over dogs.
• 14:34
  Kevin: I've got to get to the door open it, and I can't open it all the way because it runs in my little chair, so I have to like get my hand on the handle, open it a little bit, and then back up so I can see what's going on.
• 14:54
  Kevin: By that time, usually whoever was that ring the doorbell is gone.
• 15:01
  Dennis: Simple things that people take for granted.
• 15:03
  Dennis: Like even using a screwdriver, whether it's a Phillips or cross, you know, and being able to line the tool to the proper location becomes harder.
• 15:19
  Dennis: When you're trying to find a latch or trying to find something, and the location of it, if it's poorly lit, you're struggling just to unhinge or to unlock something, becomes more difficult.
• 15:37
  Kevin: Yeah, one thing I'm notice that I have problems with this sometimes is like a uh, and I use the same work, right?
• 15:47
  Kevin: You didn't take a picture of it with my phone.
• 15:51
  Kevin: Is the uh serial number or tag or whatever look for is to locate it in some awkward position where if I get myself into that awkward position, it's gonna be in badly for me.
• 16:09
  Kevin: So I go and stick my arm around taking a picture of it and making sure, read it to make sure I got it.
• 16:18
  Dennis: Exactly.
• 16:19
  Dennis: I like your awkward position because now even plugging in something where if it's an awkward position, I would have to ask my wife to do it for me because of the positioning, and I can't see well enough to actually align everything together.
• 16:40
  Dennis: Yeah, that makes perfect sense because uh take like uh electro climate.
• 16:46
  Dennis: They're so uh I want to say flex, they're still two problems, but unless you have them lined up exactly what they should be.
• 17:00
  Dennis: Sometimes you just can't seem to get it in there.
• 17:06
  Dennis: And with the vision being blurry, everything is in small print.
• 17:12
  Dennis: Every mail that you get, they want to cramp back everything in a small letter that everything fits, instruction books, technical manuals, they're no longer in big print, you know.
• 17:28
  Dennis: Yes, they do use like pictures, but then the letterings that refer to the different spots, it's hard to read.
• 17:39
  Dennis: Is that an A?
• 17:40
  Dennis: Is that a number?
• 17:42
  Dennis: You know, and so all that fits into, and I'm an engineer.
• 17:48
  Dennis: I've got to know the technical specs, I got to know how to break something down step by step and understand the process.
• 17:57
  Dennis: So if you can't even read the manual, which is small print, and even though it's pictures, you can't read the lettering properly.
• 18:07
  Dennis: It becomes difficult.
• 18:11
  Kevin: Yeah, sometimes the uh attractions are like not the way to go.
• 18:18
  Dennis: No, no, it's very manual.
• 18:20
  Dennis: And so I now cheat.
• 18:23
  Dennis: I'll look for the YouTube video that walks through it.
• 18:28
  Kevin: I think a lot of the uh tradesmen we've had to work on our house at various times or another for a while to live on YouTube.
• 18:39
  Kevin: Sitting there listening to some pups on their plate in the background.
• 18:51
  Kevin: Oh, that's how that works.
• 18:56
  Dennis: We just recently put in a security light over on our garage, and it was interesting because I wasn't confident enough to go through the instructions, so I couldn't read the instructions, and my wife was scared of all the instructions that went in there, and we had a person come in, assemble it, then climb up a ladder and install it, only to come to find out that he missed the couple steps, and so to I was able to go back to the YouTube video and see all the steps, and then it was like, oh, this security line isn't working because the line isn't coming on, or when we do the programming, it didn't work, and so that YouTube broke it down step by step by step, and then I had to show that to the installer.
• 20:03
  Dennis: So, whereas in the past I was confident enough in my reading ability and in my visual to learn it, that I could have put it together in a half an hour, no problem.
• 20:17
  Dennis: But now, since with my vision, my confidence has gone lower, and so it becomes harder.
• 20:29
  Kevin: Yes, I completely understand.
• 20:33
  Kevin: Sometimes just being yeah, I'm non-technical uh average consumer, the pictures don't help in the instructions because uh you're always wondering, okay, could I miss you?
• 20:54
  Kevin: I read this, you know.
• 20:57
  Kevin: Is that what this is?
• 21:00
  Kevin: Uh uh, I think we had uh we were assembling uh furniture here.
• 21:09
  Palmi: Palmi had like for some reason the uh h legs were not looking correctly.
• 21:22
  Kevin: And what it was is the manufacturer had packed them as one thing together.
• 21:35
  Dennis: They're wonderful a warning system that's our complex advanced uh super advanced warning system.
• 21:47
  Kevin: Uh if you look on a little type, it's our head of HR, and WhatsApp is our head of security.
• 21:58
  Kevin: Okay, I want to explain something for our listeners, sir.
• 22:05
  Kevin: Obviously, you can't tell because in front of me is an Asian man.
• 22:14
  Kevin: Okay.
• 22:15
  Kevin: Would I like to get you're telling me a story about the different stages of having your eye?
• 22:25
  Kevin: At first, you get kind of like uh wiping the cornea off.
• 22:32
  Kevin: Eventually you have to have your cornea replaced.
• 22:36
  Kevin: If you don't mind what you go through the story of the difficulty you have doing those.
• 22:43
  Kevin: Yeah.
• 22:44
  Dennis: Um the first thing that when I was younger, the solution was stronger and stronger glasses.
• 22:55
  Dennis: So eventually my glasses became very thick, like you know, cook bottle glasses.
• 23:04
  Dennis: It reached a point where glasses no longer became effective.
• 23:10
  Dennis: And so the next alternative was to do what they called a PTK, which was basically taking a laser to my cornea and basically cutting away some of the scar tissues, and then they would wipe it off.
• 23:31
  Dennis: So you you the way they did that was they would strap me in a Star Wars shoes, I mean Star Wars chair, pry my eye open so there was an actual fixture to hold my upper and lower eye open, and so it wouldn't be moved, and I couldn't move at that point.
• 23:51
  Dennis: Then the doctor would pad this laser and would basically cut away to it, but it was like a puff, it felt like a puff of air, it was you know broken up, and then she would take a cloth, a real gentle cloth, and wipe it away.
• 24:16
  Dennis: And it was weird because I was aware of what was happening.
• 24:21
  Dennis: You would think that they would, you know, totally deaden me, but I could still fear what was going on, and the sensation was that there would be all this flying debris when I actually looked out after that.
• 24:37
  Dennis: You would see all these tiny groups kind of moving around, and so that was the next step, but my eyes continued to get worse and worse, and even after doing this PDK, it would still be burnt back, and so the next step was an actual corneatransplant where they would cut out my cornea, and then I would have to get a donor cornea, and they would actually sew it in.
• 25:12
  Dennis: So even right now I can feel the stitches, the stitches are one of the ones that would dissolve.
• 25:21
  Dennis: It'd be ones that, and so my visit right afterwards, they had to cut out some of the stitches because it was rubbing against, you know, it was irritating my eye.
• 25:36
  Dennis: And so then the last part would be is what they're trying right now, and that's taking what they call a scolaral lens, which is larger than a normal soft contact lens, and they would fit it in, but because of my Chinese heritage, it took two people, one to hold my eyelid above and another one to hold it down, and put that lens in.
• 26:07
  Dennis: The funny part was okay, now it's your turn, and I'm still struggling with that.
• 26:22
  Kevin: See, I think if it were me and stuff for you, it would take more than two people because it had to be swamped to hold me down because I don't think I could take that.
• 26:41
  Dennis: It was funny.
• 26:42
  Dennis: One of the people that was holding my upper um eyelid said he couldn't even do that.
• 26:51
  Dennis: So these are the people, and even but but it was like afterwards he goes, but I've got confidence in you, sure, you can do it, you know.
• 27:02
  Dennis: But it doesn't describe the struggling of actually doing it.
• 27:10
  Dennis: Even after taking it out, my eyes felt really sore.
• 27:17
  Dennis: And so there's that fear factor that goes into it.
• 27:23
  Kevin: How long does teach you recover from something like that?
• 27:28
  Dennis: So I was told anywhere between a year and a year and a half, everyone came to me and said, Oh, can you see better?
• 27:39
  Dennis: Can you see better?
• 27:41
  Dennis: And there wasn't, there was incremental improvement.
• 27:46
  Dennis: It's a work and process, but it's not a dramatic overnight.
• 27:52
  Dennis: Oh, I can see 2020.
• 27:54
  Dennis: Even now, with the transplant, it's I am 2200, which is miles away.
• 28:07
  Dennis: But when I have a scalar lens, it's 2030.
• 28:12
  Dennis: So the opportunities there, but the struggle to get there is another thing.
• 28:21
  Kevin: Yeah, but okay, as far as treatment, I think you talked about this earlier before we got on the podcast.
• 28:31
  Kevin: Uh eye drops.
• 28:34
  Kevin: I don't know what this is, hypertonic ceiling.
• 28:38
  Kevin: Is that what the uh eye drops are mainly?
• 28:43
  Dennis: So there are an eye drop now.
• 28:46
  Dennis: When when I was going through this process, there had to be some kind of steroids that I took.
• 28:55
  Dennis: Also wanted to kill any of the bacteria.
• 28:58
  Dennis: But ever since the surgery, I have to take these eye drops every day.
• 29:09
  Dennis: I can still get rejected, my cornea can still be rejected.
• 29:15
  Dennis: So if we think of it as a living organism, I have to take the drops every day because if I don't, it could actually the transplanted cornea could be rejected by my own body.
• 29:32
  Kevin: Okay, one of the options that we talked about.
• 29:35
  Kevin: I've never heard of these therapies.
• 29:40
  Kevin: Gene therapy.
• 29:49
  Kevin: Okay, if you can go into what a doctor or a scientist or a researcher doesn't really understand, what would you say is the most common thing they don't understand?
• 30:27
  Palmi: I think a lot of doctors oh my goodness.
• 30:34
  Dennis: I think it's one thing where they cut and they do a transplant.
• 30:40
  Dennis: Right.
• 30:41
  Dennis: I think the assumption is going through the journey of what becomes the challenges.
• 30:49
  Dennis: I we got I've got a wonderful doctor from uh Washington University, St.
• 30:57
  Dennis: Louis.
• 30:58
  Dennis: She has done many, many of these types of uh cases like mine.
• 31:05
  Dennis: And that's why I chose him.
• 31:07
  Dennis: But as a doctor, you can also get dragged into some of the personal issues, right?
• 31:16
  Dennis: One thing that she she's very good at is drawing boundaries, and so she's empathetic, but there are certain boundaries she knows that soon become rabbit holes, right?
• 31:32
  Dennis: And she doesn't want to get drawn into some of these rabbit holes, and I understand it's it's wonderful to look at some of these things, and there's all these new advances, but ultimately it becomes where you've got to trust the doctor and trust that they're doing the right thing for you.
• 31:56
  Dennis: It's a major decision for someone to actually do the surgery.
• 32:01
  Dennis: So to answer your question, it's it's an it's a delicate balance.
• 32:10
  Dennis: It's it's you want them to be more empathetic, but at the same time, you understand their situations, and there are some things that they would rather not get into the details, and you may not have all the same information and perspective that they have.
• 32:33
  Kevin: Um now we get to a new phase at the interview.
• 32:37
  Kevin: Obviously, somebody out there they have uh a question uh about this that you know is not covered in my computer-generated notes.
• 32:52
  Kevin: And uh perhaps they want to ask you a question about treatment options or abilities, if you will.
• 33:04
  Kevin: How can they get in touch with you?
• 33:08
  Dennis: If they want to reach me, I can leave my phone number so that this way they can contact me and we can talk about the circumstance and understand some of the differences.
• 33:27
  Dennis: It's I noticed that sometimes if I give like an email, there's so much to talk about, so many questions.
• 33:36
  Dennis: And it's harder just to type out the questions.
• 33:40
  Dennis: A simple direct conversation is like found more appropriate, like through a phone call.
• 33:48
  Dennis: Again, a lot of this is my own experience.
• 33:52
  Dennis: I don't ever want to minimize and say that what I've done is the same thing that they're doing, or what my doctor prescribed is what your doctor would prescribe.
• 34:07
  Dennis: I think it's good though to know that there are other people that are going through the same cornea dystrophy and understanding the type of dystrophy and what is available.
• 34:22
  Dennis: I also believe that there's a strong community that's out there where people can reach and feel like they're heard and feel like they're not alone.
• 34:38
  Dennis: I think that's important.
• 34:42
  Kevin: Okay, what we can do in addition to that, because you meet up one day, broadcast your telephone number news is composed of this if you turkey your time.
• 34:58
  Kevin: They can always get hold of you through our Facebook page.
• 35:03
  Kevin: Yes, we have a Facebook page that's uh solely for this podcast, www.facebook.com.
• 35:16
  Kevin: And then I believe it being a public group, uh, you have to do a search for the group with the same name as our podcast when life gives you lemons.
• 35:31
  Kevin: So I will try to make sure that uh keep an eye on what people post and make you aware of anything that is not there.
• 35:47
  Kevin: That way you don't have to read and scroll through the computer.
• 35:52
  Kevin: Does that make sense?
• 35:54
  Kevin: So again, folks, uh, if you want to listen to our episodes on this or future episodes or past episodes, you can always download them off our website www.lifeddlovens.net.
• 36:17
  Kevin: Thanks for listening, and we'll talk to you next time.