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Diabetes & Blindness: Nicole’s Story authored by the young woman you’re going to read about today was illuminating. Until I met Nicole my understanding of diabetes severely lacking. What I really liked about Nicole’s story was her openness and vulnerability. In this follow-up to her original piece, she’s just as authentic.
Table of Contents
- Picking Up From Where I Left Off
- Dialysis Begins
- Eye Injections Continue
- A Physician’s Thoughts vs Mine
- Dialysis Unit & Friendship Protocols
- Sight Saving Vitrectomy (Eye Surgery)
- Another Gas Bubble In My Eye
- I Can’t See!
- Positive Affirmations With My Mala
- Kidney & Pancreas Transplant
- Cataract Surgery Proposed
- Swelling Inside The Eye
- Cataract Surgery
- Surgery Outcome
- Newfound Sight
- Connecting With Nicole
- Image Descriptions
Picking Up From Where I Left Off
Wow! Hi again! I can’t believe it’s been three going on four years since my original post for Bold Blind Beauty! A lot has happened in my life since 2017. I’m going to take you back a few years where the last post left off and bring you to my present day.
I explained previously how having type one diabetes caused severe damage to both of my eyes and permanent vision loss to my left eye. Briefly, I mentioned that diabetes can cause other complications to major organs.
In 2015 when I was told I had severe diabetic macular edema, and severe proliferative retinopathy, I also found out I had chronic kidney disease (CKD). It was another devastating blow to my situation. Not only did I have CKD, but it was stage 3. That meant I only had 50% kidney function left.
While the doctors said I could very well live with that amount of kidney function they had no idea if I would be able to maintain it. As my eye doctors continued treating my eyes to save my vision I watched my kidney function decline every few months. Soon I was told I would be in full-blown kidney failure. I would need dialysis and if I wanted to live past 5-10 years which is the life expectancy on hemodialysis I would need a new kidney.
I am not known to sugar coat things. Managing my eye disease, my CKD, diabetes complications, and other autoimmune diseases was A LOT. There was shock, frustration, crying, and fear. I let myself move through those things and I didn’t stay stuck in despair. It was trying and testing me. Early on I made up my mind about two things; one I wasn’t going to go blind and two I wasn’t going to die. I flat out refused to go down like that. Even though I had turned my diabetes around and had great management of my blood sugars, the previous high blood sugars continued to take a toll on my organs.
In the summer of 2018, I had to start dialysis. I decided to do hemodialysis and went to a center three times per week for 3.5 hours each time. A machine would filter out and clean my blood. Without dialysis, I would die. It was very scary.
My unit was very small. It was a large open room with 16 chairs. The unit was always freezing but I made the best of it and even made friends. We would yell back and forth over the machines as we sat there anxiously waiting to be done with our treatments. I was 35 that year and the youngest person in my unit. All of my friends there were in their 80’s and 90’s.
After my vitrectomy on my left eye in 2017, it stayed “quiet.” That term meant that it was stable. I didn’t need any injections or laser treatments. With everything else going on it was such a relief. Over a year went by and it stayed that way. My right eye had been okay but continued to need some injections for the edema. I also started to have more hemorrhages in my right eye. They were small but since my right eye is my dominant eye I was really concerned.
Eye Injections Continue
Dr. Gorin told me when they started treating me that typically after about three years people with diabetes and proliferative retinopathy will finally stop needing treatments. I said to him one day after three years of treatments “when am I going to be done? This is relentless!” All I did was work and go to the eye doctor. I saw him more than I saw my friends. He said, “well you have diabetes.” I said “okay?!” So he said, “I’ll probably see you until one of us dies.”
I guess he was being dead serious but also trying to make a joke. I just sat there kinda pissed off. I wasn’t mad at him but I had changed every aspect of my life. I was super compliant, diligent, determined, and disciplined. I needed a break. But a break wasn’t coming. Actually, just the opposite was about to go down. Dr. Gorin said to me before that typically when diabetes causes eye disease the kidneys can typically start to go as well and vice versa. “That’s how it is,” he said.
Now we had to have a very serious conversation about my right eye (my good eye). Dr. Gorin suggested a vitrectomy. I was like “what?” “Is that necessary??” I had not had a major hemorrhage and been blinded like with my left eye. He explained that with my current health status things could go bad very quickly and that this vitrectomy would be a “preventative surgery.” He went on to say this was in my best interest. The next thing I knew I’d be sitting in Dr. H’s office once again. There was no question Dr. H would do this surgery but I was less than excited about having to have another vitrectomy.
A Physician’s Thoughts vs Mine
I went to see Dr. H and I thought—I’m just going to hold my ground with him. I’m definitely not going to cry because while crying is fine, some doctors can’t handle it when patients cry. I thought if I could keep it together this would be more pleasant for both of us. Besides, I knew how he was and I wasn’t as anxious as before. I trusted Dr. Gorin and his recommendation.
Dr. H examined my eyes. He sat back and looked at me and then started in. “I wouldn’t want to do a vitrectomy on your right eye” he stated. He went on to say “you have 20/20 vision in that eye. The bleeds are small, and Dr. Gorin can treat this.” I told him Dr. Gorin and I want to do this to prevent things like what happened with my left eye. He stared at me quietly. In a matter of fact way, he said this can be dangerous. “You can lose more vision in your eye,” I said I can lose vision in my eye if we don’t do it.
He said, “you could lose your entire eye.” On some level, he did understand the severity of my case and why I wanted to do it. He said, “if it were me I wouldn’t do it.” Then he said and “I don’t believe in preventative surgery.” I held my own and I said “well I do believe in preventative care.” He stared at me again and he said: “I don’t think we should but if you want it done I will do it.” I left and scheduled the vitrectomy for my right eye. I was nervous but I felt this was in my best interest.
Dialysis Unit & Friendship Protocols
I continued going to dialysis and told my sweet friend Jane that I was going to be having eye surgery soon. I would need to change my chair time and she wouldn’t see me on Thursday like she always did. She had needed eye injections also and understood eye stuff.
At dialysis, you always tell your chair-mate if you won’t be there because typically if someone doesn’t come to treatment they are in the hospital or they have passed away. “Okay dear” she said. “I will say a little prayer for you.” She blew me kisses and went to her dialysis chair. I had to arrange for my parents to drive me to dialysis.
This surgery was going to be different because if anything happened I wouldn’t be able to function in the same way. Since my left eye has some blindness already if I couldn’t see or went blind in the right eye everything would look different, literally. It could mean I wouldn’t be able to text, drive, or function independently.
On December 31st, 2018 I went in for my vitrectomy. As a dialysis patient, I was on a fluid restriction. That means I was only drinking a water bottle and a half per day. I also only had one arm that could have blood pressure done, blood draws, and IVs. I am already a hard stick but when I am dehydrated health care professionals have a really hard time finding my vein. I am also really afraid of IVs.
So on this morning as multiple people took jabs at my arm I started having anxiety and started crying. Kidney failure causes high blood pressure and that combined with my anxiety pushed my blood pressure (BP) upwards and onwards to 207/102. Way, way, way too high!
Sight Saving Vitrectomy (Eye Surgery)
The doctors came out and said, “listen if your BP does not come down we have to cancel your surgery.” I said no, no, please don’t do that. They had no idea I was missing a dialysis treatment, and fasting (hard to do with type one diabetes,) and had rides arranged, etc. I said okay I will calm down let me practice my breathing.
They left and I started to inhale through my nose and exhale through mouth. I did this over and over again. When they came back 20 minutes later my BP had dropped enough for them to take me back. I asked them prior to surgery to knock me out! I didn’t want to know what was happening. Dr. H doesn’t do that and they kept telling me I was going to be awake.
With the past vitrectomy, I had not remembered anything and all I wanted was for it to be like that. So when they kept saying I would be awake I was freaking out. A nice woman came out and said “my name is Emily, and I am a nurse. I’m going to be doing your anesthesia.” She talked to me about what she would give me and told me about her education so I knew she had expertise past being an RN. I felt good with it and I was quickly taken to the operating room (OR).
Another Gas Bubble In My Eye
The cold air in the OR always hits me the way it does when you enter an ice skating rink. On my back, I could see seven people above me. All moving quickly around me in different directions making last-minute adjustments. First I would be given medicine to relax and sedate me a little and then they would do a nerve block. Emily said once the nerve block was done she would pull back on the medicine some. She said, “okay, Nicole you’re going to start feeling a little sleepy now.” I could see her and bright lights. Then I felt good and I knew I was losing consciousness. Perfect that’s exactly what I wanted. I don’t remember anything after that.
When I woke up I was on my right side. I felt panic start, omg why am I on my side? I was thinking something went wrong. I silently started to cry. I knew any type of position other than my back meant I got a gas bubble. A gas bubble wasn’t on the agenda per Dr. H. A nurse asked what was wrong and I asked why am I on my side? Is my good eye okay? She said don’t worry they will be out to talk to you soon.
I Can’t See!
Then I saw Emily and she said “hey, don’t worry everything is okay. There was some unexpected bleeding during the surgery so Dr. H needed to use a gas bubble.” I said but how long will I be on my right side? She said Dr. H would talk to me about it but probably only 1-3 days. That made me feel better.
The idea of being face down for weeks or months also gave me anxiety. Then she said do you remember what you said when I gave you the medicine? I said no, what did I say? She said you said “Emily I LOVE YOU.” I just started laughing and told her yes because I felt myself going to sleep and I knew it would be how it was with my left eye, even though you all kept saying I would be awake.
The recovery for this eye was a lot different than my left eye. With the left eye the next day I immediately saw everything when they took my patch off. I mean the blindness was still there but I saw bright lights and had the vision I had before the surgery. When they unpatched my right eye, my good eye, I couldn’t see. I cried and I said it’s black, I can’t see. What was worse was I can’t function well without my right eye.
So for weeks, I was blinded. I couldn’t read, see the TV, drive, walk well without bumping into things or put my own drops in. I had trouble seeing how many carbs I was eating. The ability to see so I could dose my own insulin was imperative to my survival and no one knew how to give me insulin via my insulin pump except for me. My friend came on her lunch breaks to do my afternoon drops and my mom helped with the am and pm drops.
Positive Affirmations With My Mala
They said the reason I couldn’t see was because of the gas. When I asked if I would regain all my vision they said they hoped so but they didn’t know yet. I had to be patient and wait it out. I felt deeply saddened and I hoped I had made the right choice. It looked like black water was in my eye. At the top, after a little bit, I could see light but behind that everything was blurry. If you have ever opened your eyes underwater that’s what it looked like, except it wasn’t clear it was dark/blackish.
I listened to the TV and I wondered about being this type of blind. Not like my blindness before where pieces of my vision were missing and my right eye overcompensated and I saw pretty great. The type of blind where I wouldn’t be independent anymore. I let those thoughts be fleeting.
At night it was dark as it was in the daytime. So I would get my mala out. It has 108 beads on it and I would push a bead over and say “I can see, I’m okay” “I can see, I’m okay.” I said that 108 times until I had pushed over every single bead. I started to come to a place of acceptance that if I didn’t regain my vision and I would be like this from here on out that I would find a new way of seeing the world. But I stayed hopeful it would go back to how it was.
The Third Double Transplant Call
As the weeks passed I started seeing the black water get lower and lower. The blur also started to dissipate until one day the black water was a teeny tiny drop at the bottom of my eye and then one day it disappeared. Eventually, I regained all of my clear vision and I made a full recovery.
At this point in my eye journey, I had already had 40,000 laser burns between both eyes, about 50 eye injections, and 2 vitrectomies. As my eyes stayed “quiet” I think in 2019 I was finally told both eyes were “stable.” My appointments were moved from treatments to follow up check-ups with Dr. Gorin. Instead of every few weeks, or every 3 months, they finally pushed me out to every 6 months. I was absolutely elated and so grateful. Since each of the vitrectomies, I have not had any need for lasers or eye injections.
On April 30th, 2019 I had my 3rd transplant call. I had been on dialysis and been listed for a kidney/pancreas transplant. My physicians all highly encouraged that I had the dual transplant instead of the kidney-only transplant. They had hoped that with a new pancreas I could live my life without diabetes. What that would mean is that with a new pancreas working for me and without diabetes that my complications could improve or at the very least they wouldn’t get worse.
Kidney & Pancreas Transplant
My eyes had been stable for many months before my transplant, but with type one diabetes and end-stage eye disease, they suspected I may need more treatment over time. A new pancreas had the possibility of changing that narrative. My donor was a 19-year-old male. He passed away and gifted me two of his organs. Freeing me from both kidney failure/dialysis and type one diabetes. While transplants don’t always last forever and aren’t “cures” these gifts saved my life, improved my quality of life, and was the greatest act of love I have ever known. Today I no longer live with kidney failure or type one diabetes. I am off of dialysis and off of insulin.
In 2020 I was at an appointment with Dr. Gorin post-transplant and he was like “wow your eyes look great! I have never seen them look so good!” He turned around and started writing his notes which he usually speaks to himself out loud as he types, under his breath. The notes were sounding good to me until I heard him say “sending her to Dr. M for cataract surgery for the left eye.” I was like WHAT?!
I don’t want cataract surgery!!” He said the cataracts need to come out. This is the best time to do it with your eyes stable like this. I said maybe it’s the best time for you but I am a full-time student (I went back to school 6 months post-transplant). I said I literally can’t have this done right now.
Cataract Surgery Proposed
I complied with Dr. Gorin and went to see Dr. M. He was so nice and I was so happy I liked him. The word “progressive” was used a lot regarding my cataracts. Since I am on prednisone as one of my anti-rejection medications it does not help my eyes at all. Actually, it could be why the cataracts were getting worse. I explained to this new doctor I could see fine. I mean my left eye wasn’t great but it was my retinopathy that made it that way NOT the cataract.
Nothing had changed other than reading on a computer was a little difficult. Since I was pulling good numbers on the eye chart (not always an indicator of what we can and cannot see) he agreed to let me push it off and follow up every 6 months to monitor the progression. I was like perfect! He suggested +1 readers and that made a world of difference.
Six months later (December 2020) Dr. Gorin was looking at me and as he dictated his notes he said something about edema in my left eye. I said “yeah right.” I leaned in and looked at the optical coherence tomography (OCT) and I started to laugh. He was like “what is funny?” I said, “it’s so small there is barely anything there!” He said you have to have this eye done right away! I was like “what?”
Swelling Inside The Eye
I am in school not to mention the refractive cataract surgery is not covered by insurance and runs $5,000-$10,000!! He was like go see Dr. M. “Oh my god! This is just great!” When I saw Dr. M two weeks later he basically said it’s probably better to get it out out of the way but that since it isn’t much worse than 6 months ago he wouldn’t make me do it. Basically, it was up to me.
Since Dr. Gorin really was worried about my eyes getting worse all the sudden and not being able to do cataract surgery at all if it got worse I decided to move forward. I pulled out student loans in order to have both surgeries done and scheduled my left eye with the right eye two weeks later during my Christmas break.
I went in for an eye injection to prep my eye before the surgery and was told by Dr. Gorin I had had a “spontaneous resolution.” “A what?! So I don’t have any edema?” “Nope it’s gone he said.” “So I don’t need an eye injection either??” “Nope! Do you want one?” “Heck no,” I said! I skipped outta there like my ass was on fire and went home to do my finals.
I was so excited I forgot to ask if I still needed the surgery. Since I already paid for it and had the time to do it I decided to do it. A lot of people didn’t understand I didn’t technically need it but I wanted to get it out of the way. In reality, it was like another preventative surgery. Preventative in the sense that if I had edema again and needed the surgery it might not have been safe to do it. So moving on it when my eye was stable was in my best interest.
During this surgery, I was going to be awake. Dr. M said if we put you under too much you won’t be able to hear me and I need to be able to tell you where to look. I couldn’t stomach the thought of being awake. I decided not to think about it until the day of. But I did say to him “okay, I’ll be awake…but also please don’t leave me with a dropping eyelid, okay?”
I had seen some of my other friends with diabetes have eye surgeries and their eyelids didn’t look the same. He explained that can happen when physicians use the eye injection for numbing. He said we definitely won’t give that to you then. I inquired why eyelids do this with Dr. Gorin and he also explained when these the metal piece to hold the eye open (sometimes) if it’s left in too long then it can result in this. He said he hadn’t seen it with Dr. H or Dr. M’s patients. I wondered if he said that to ease my vane mind, but he never lied to me.
The day of I was nervous but this was my third eye surgery so while it came with risks because of my proliferative retinopathy, potentially exacerbating my edema (there’s always swelling with surgery) I was slightly less anxious. The surgery took about 30 minutes. I could see lights and 3 black spots and hear Dr. M. He sounded far, far, away. I kept having the urge to sleep or I kept wondering if I was sleeping?
The surgery was successful. I had some pain for the next 48 hrs but then it went away. I could see what looked to be some fluttering in my peripheral vision but it was clear. That subsided and now things are VERY bright out of my left eye. It didn’t change what I see at all, it looks the same just brighter. When your natural lens is removed that’s what happens.
We all see through a natural lens that has a tint on it. So my artificial lens makes lights especially at night bright and like starbursts. If that does’t go away in 6-12 months then Dr. M will do a procedure in his office to fix it. Currently they have started to taper me off of my drops. I am about one month and one week post surgery. Dr. Gorin has taken over the drop taper. Both Dr. Gorin and Dr. M have decided to postpone my right cataract surgery stating I don’t need it yet. Good thing because I wasn’t going to do it at this point. I know I don’t need it.
Sometimes the journey seems never-ending but I finally get some breaks from all the eye stuff. Dr. Gorin says he’s proud of me because “we put you through hell and back again and you came through it all and grew so much.” We can now joke I kept coming back for more.
It’s true I did grow and you know what else? I wouldn’t change any part of my story. None of it. Even if things had gone differently everything that has happened went the way it did because it’s part of my journey. In every given moment we are all right where we are supposed to be. I find that statement may be easily taken out of context. No one wants to think “they are where they are supposed to be” if horrific things are happening. This is what I believe to be the truth for all of us and that’s why I say it.
It does not mean we will always like what’s happening but when you get through really tough things it tends to make us all stronger. I have learned how to walk through fear, find acceptance, stay optimistic, and move through things with grace. My experiences showed me how to live that way. Those experiences shaped who I have become. I see with gratitude every single day.
In a way, I learned to SEE things in a whole new light. I prefer my newfound sight over what it was in the past. Today you can find me twenty-one months post kidney/pancreas transplant,
- quarantining with my little dog, Luna,
- on Instagram @nicgetsreal advocating and supporting others with chronic health issues,
- trying to do yoga,
- hiking and spending as much time in nature as I can,
- exploring spirituality,
- and finishing up my Bachelor’s degree in Health Science.
Connecting With Nicole
- Instagram: @nicgetsreal
- The header photo is an angiogram from 2017. All those little circles are laser burns which still trips me out when I see it again because they are everywhere. The black spots are vision loss and I do believe the bright spots are leaking vessels.
- Vitrectomy Recovery 2018
- Started dialysis- June 2018
- Angiogram same as the header
- Meeting with Dr. H for discussion about vitrectomy of my right eye- September 2018
- Right eye vitrectomy- October 2018/gas bubble
- Mom administering my eye drops
- October 2019 When Dr. Gorin first tells me I need cataract surgery
- July 8th, 2020 meeting with Dr. M to discuss cataract surgery (in the middle a pandemic…)
- Right eye cataract surgery- Dec.16, 2020
- Cataract Recovery Dec. 2020
- Safety glasses I wore after surgery for the 1st month since I couldn’t wear my +1 readers all the time. They gave me a headache if I did. Dec. 2020
- Hiking picture Aug 2020
- April 2020 dual organ transplant anniversary.