I have amazing news–news that I am bursting at the seams to let everyone know: I have booked my crosslinking surgery for my eyes!!!! It is one of the single exciting moments in my life: to know I can halt the Keratoconus condition that has caused my eyes to deteriorate so much. And it is only possible because of the amazing fundraiser my boss, Shahid Mahmud, organized, and because of all the wonderful people who shared the link and donated to the GoFundMe account he created in my name. (The link to the fundraiser is here.)
We made the original fundraising goal, $8000, within days (with donations made by many writers in the community and even Game of Thrones showrunner, David Benioff!) and I am STILL overwhelmed by how generous my friends and complete strangers were. One thing I found out was the sf/fantasy community really does look out for its own. I realized I was truly part of a family in this writing field.
Originally, I was planning to fly back to Australia for the surgery, since the crosslinking procedure there costs only $2500 per eye (it is $4000 per eye in the US). So the boss estimated the amount I would need, and a fundraiser total of $8000 was raised with that goal in mind, including the amount for my flights, too. Well, as with everything, it wasn’t so clear cut as we had originally thought. The surgeons in Australia wanted to see me first before committing to do my eyes, and if I flew in to Australia for that appointment to redo my eye scans so they were current, there was no guarantee they could then schedule the surgery while I was there. And they would not confirm a surgery appointment without approving the scans first. That meant I would most likely have to fly to Australia just to get my eyes rescanned, then fly back into Australia a second time for my surgery. Two flights were not covered by the amount raised in the fundraiser.
So I started to look here for surgeons in the US to treat my eye condition, knowing I had most of the money raised to get it treated here, but in the meantime I fell incredibly ill. I developed a major flapping DVT (clot) in the superior vena cava (major artery) leading to the heart. I was with my boss at the time, during a work convention, and all I knew was that my pulse was racing and I had a lot of sudden pain and sensations down my right arm. He put me on a plane that morning to get me somewhere safe, and I went straight to the hospital to get diagnosed. I then spent two months of long recovery that was never quite complete: I had lingering racing/jumping heartbeats, high blood pressure and a lot of enlarged lymph nodes (and one that had “changed”) to deal with–let alone passing a very painful clot. I was told not to organize any procedure, even an eye procedure, until we knew what was going on with my body.
Then a few months later, just as I was starting to get fit again, I collapsed and had a TIA (small stroke caused by a clot fragment in the brain!) and I experienced my second near-death scare moment within a handful of months. The new thinners I am on were stopping me from creating new clots, but old clot debris was still floating around, so to speak.
Anyway, that brings me to the medical diagnosis I had two days ago. I had another fall (got a concussion) and the docs were alarmed at how high my blood pressure was, which has been abnormally high since I had the clot diagnosed in November. I was sent to hospital, and long story short, I was rushed into the Cardiologist appointment two days ago. I will have a ultrasound next week to check if my lymphs under my arms have returned back to their normal size, but at least now know what is going on with the rest of my body. It appears I have a heart condition on top of a blood pressure condition on top of my two blood clotting conditions!
Yes, you read that right. Apparently the reason I am having so much trouble regulating my circulatory system is because multiple conditions are (while not necessarily bad by themselves) reacting with each other and creating a perfect storm in my body. My newly diagnosed heart condition, supraventricular tachycardia (SVT), causes a fast heart rate that begins in the upper chambers of the heart. With SVT, abnormal electrical connections to the heart cause it to beat too fast or jump. My heartbeat has been too fast since I first got the clot (usually 100 beats per minute, and up to 160 beats per minute, even when asleep). And apparently, if the conduction of blood around the body is uneven, this arrhythmia can also cause clots because the blood is pooling when it shouldn’t or isn’t being pumped smoothly or properly around the body. With my blood clotting conditions, it could have increased the risk of me creating that deadly clot last November.
So as you can imagine, the docs had a reason to not want me to have any elective procedures until I sorted out my body. I also found out from the cardiologist that, usually, a racing and irregular heartbeat brings down blood pressure (and causes interrupted oxygen, hence my dizzy periods), so she said she would hate to think how high my blood pressure would be without the heart condition dragging it down–it was 210/90 in the hospital last week, which is way too high.
But surprisingly this all GOOD news to me. Don’t get me wrong, it is not good I have a heart condition. What is good is that I have a diagnosis and while these various conditions have coalesced to make me a currently very sick girl, all these things are treatable. I am already on the right tablets for the blood clotting conditions, and now they know what to put me on for the blood pressure and SVT. If the heart doesn’t slow down, they can even go in and delicately burn those errant nerves (a fascinating procedure to have explained), so I know I will not always feel this warn out and sick. There is a light at the end of the tunnel, even if I’m too exhausted to reach it at the moment….
Which means I could finally book my eye surgery! I will still feel miserable for the next month or so, and will be on a heart monitor until I even out the regulatory systems of my body, but they say I will be one of the healthiest humans on the planet once my meds are working, because I don’t drink, smoke or drink (I even stopped having caffeine when these problems first started). All I need is a little help to get my body in balance again.
So I started researching eye surgeons–including one I met on Instagram: Dr. Brian S. Boxer Wachler, who is a Keratoconus treatment pioneer.
According to his website: Dr. Brian Boxer Wachler is a leading keratoconus treatment expert. He is considered by many as “The Keratoconus Guru.” He was the first in the United States to report the results of Intacs® for Keratoconus in 1999. For over 19 years, he has performed many thousands of Keratoconus procedures on patients from all over the world. He published the largest study to date on Intacs® treatment for Keratoconus. Due to his pioneering work, Intacs® is now recognized as a treatment for Keratoconus. He invented the non-invasive Holcomb C3-R® Crosslinking System in 2003 and has the largest experience with crosslinking in the world outside of Germany.
Dr. Brian is a best-selling author of three books on Keratoconus and is known as “America’s TV Eye Doctor”, appearing regularly on shows and in news appearances about his Keratoconus procedures, some of which he pioneered. He was also the first doctor outside of Germany to perform corneal collagen crosslinking and I soon realized that if I was going to trust anyone to do the crosslinking procedure on my eyes, why not trust the guy that created the procedure (Holcomb C3-R), one that is less evasive than most, ensuring minimal chance of infection.
Watch Dr. Brian being interviewed on a news station, where he gives a great description of Keratoconus and how it affects his patients, talks about his treatments and how he saved the sight of a future Olympian below:
So once I decided to get my eyes done by Dr. Brian I contacted his office this week (I had already talked to him personally a couple of times over the last few months and he had very sweetly taken the time to answer my questions) to book my surgery.
Here are details of my crosslinking surgery (squee!), according to Irene, Dr. Brian’s administrative assistant:
Monday, Feb., 4, 2019. Arrival time of 8:30 a.m. INITIAL EXAM this day. Plan to be in the office for 3 hours.
Tuesday, Feb., 5, 2019. Time to be determined on the day of the exam (4th). This day would be the SURGERY DAY. You would need a driver or we can release you to an Uber, Lyft or Taxi Cab.
Wednesday, Feb., 6, 2019 would be the day of your POST OP and that would be at arrival time of 8:45 a.m. Plan to be in the office for 1-1.5 hours. You would need a driver or we can release you to an Uber, Lyft or Taxi Cab.
Here’s a breakdown of the cost:
Below you will find the updated breakdown of pricing for the time frame when you do come out for a 3 day visit (Feb., 2019):
C3-R $4,000per eye
INTACS $5,200/per eye
ICL $5,800/per eye
At the time of scheduling appointments, we collect a non-refundable $100 appointment booking fee that would be forwarded to the initial exam appointment. In addition to these fees, patients would need to be prepared to purchase all necessary prescriptions. Typically prescriptions can vary from $80-$400 (depending on the recommended treatments after the initial exam). Also, Dr. Brian ask that patients start a supplement regimen of Optimal Flax and Optimal Eye (antioxidant) for at least 6 months post operatively. The 6 month supply each typically run around $264 and will be added to your surgery fee.”
So that means, by getting the C3-R crosslinking procedure done (link here), which would stabilize my eyes and prevent more deterioration, the total cost would be $9064, not including flights and accommodation for those three nights, which is estimated to cost approximately another $1000 to fly (from Ohio) and stay for a few nights in Beverly Hills, California, where Dr. Brian operates from. That means I will need a total of $10,000 to get my eyes done.
While I would also love to get Intacs during the same procedure (plastic inserts that reshape the cornea to improve vision and lesson the doubles; link here), or ICL (kind of like contacts inserted IN the eye that could bring 20/20 vision back; link here), the EXTRA $5,200-$5,800 cost per eye would be impossible for me to save on my salary, and especially not before February. The most important thing is I halt my keratoconus, so it does not get worse, and at least I will be able to do that with the C3-R crosslinking procedure my fundraiser donators helped pay for.
Out of the $8300 donated (thank you so very much, everyone!), $7593.39 was transferred to my bank after GoFundMe subtracted their fees. That leaves me with $2406.61 to be saved to make my $10,000 goal by February. While one of the reasons I have to wait for surgery is to make sure I am healthier medically, it is also so I have some time to save the extra $2406.61 I need to get this surgery done.
I hope to save the money myself in the months leading to the surgery, but the mountain of medical bills I have to pay because of my seven hospital visits will make that goal harder to achieve, and I have to pay for the surgery IN FULL during the pre-surgery appointment on the 4th (one day before surgery!). So my boss, Shahid, has raised the fundraiser goal to $11,000 (to take into account the GoFundMe fees taken out), so that the Fundraiser goal is increased by $2500–the amount of money I still need to save for the trip. I do not expect anyone to donate–I am still overwhelmed and thankful for the generosity I have already received–but at least the goal now reflects the full surgery amount, now that we know the breakdown of costs.
Thank you, to everyone who has donated. I would never have gotten this surgery done without you all–my family, my friends and the sf/fantasy community. I’m excited and can’t wait to literally see what changes February brings!
The link to the fundraiser campaign is here. Otherwise, if you are new to hearing about Keratoconus, the details of the original fundraiser and why I have so much trouble seeing is below, as written by my boss, Shahid Mahmud:
Many of you know Lesley Robyn Glover (and I would like to introduce you to her if you don’t). She writes sf/fantasy as Lezli Robyn and works as my Assistant Publisher for Arc Manor. (She can be found here: https://www.facebook.com/lezlirobynglover!)
What many of you who already know her may not realize is that due to a rare eye disorder, which is progressively getting worse, she is now considered legally blind without correction (she cannot read the any number on eye charts).
When Lezli was 23 she was diagnosed with an unusual condition, Keratoconus, which is characterized by a progressive conical protusion of the cornea that results in her eyesight being distorted to the point where she sees multiple images on top of each other, as well as distortions, ghosting and halos.
(Diagram: Click here for extensive information about the condition on the National Keratoconus Foundation‘s website, and why Lezli sees this way.)
As her condition has progressed, her cornea has decreased in thickness and the cone like shapes on her eyes have become more pronounced. Her eyesight has deteriorated over the years to the point that she often can’t recognize people until they are a yard’s distance of her.
Since this is a progressive disease, her condition continues to get worse every year. But there is a new treatment to halt this progression, and maybe even reverse some of it.
(Photo: If you look at her eyes, you can see the cone shape of her corneas.)
Since coming to work for me, I have seen how much more difficult it is becoming for her to cope with her work as well as every-day activities as she deals with the lack of depth perception and significant distortions to the sights we take for granted.
On her return to Australia to see family, Lezli was able to get a full eye exam where they took topographical maps of her eyes, and they did multiple focus and measurement tests of various factors in her eyes to determine she is now legally blind without any form of correction.
And that is where you kind folk come in. It used to be that the only true effective treatment for Keratoconus was to get transplants, which is both risky and extremely expensive. However, in the last five years a new treatment has become available called cross-linking. Now, I confess to not knowing much about it when she first sent me the update, but I have since looked it up and I can see why she was so excited about it.
(Click the link here for comprehensive and detailed explanation of the surgical procedure, by William Trattler, MD, a board-certified ophthalmologist specializing in refractive, corneal and cataract eye surgery.)
Since I pay Lezli Robyn I know what she earns–and it is not enough to be able to easily afford to pay for the treatment without which her eyesight will continue to get worse. I am also aware of financial and medical difficulties her parents are undergoing and it is almost impossible for them to fund the treatment.
Currently a minimum of $2500 for each eye is required just for the basic procedure (not including specialist tests. medications, etc.) in Australia and it’s not covered by Lezli’s Australian medicare (see Optometry Australia‘s article about it here ). The cost in the US, of course, can be significantly greater (up to $4000 per eye!) so it may actually be cheaper for her to fly to Australia to get the procedure rather than have it done in the US.
So I am asking our friends to join me in raising money for Lezli to be able to get this procedure done as soon as possible–before her eyesight gets worse. Keratoconus does eventually slow down in its progression but there is no specific timeframe, and in Lezli’s case the progression has consistently continued unabated.
The procedure (more detail below) has an almost perfect record of halting this progression and it may even improve her eyesight! (In a minority of cases, the procedure not only halts the progression but it often improves the vision.)
Moreover, after the condition is halted, her cornea’s will also stop changing shape so regularly, so she would be able to get contacts or glasses to help her see better–her current degenerating condition does not allow any prescription glasses/lenses.
At the moment Lezli believes $8000 should cover most, of it, and I thank you for any amount you can donate–even if it is only $5!
A litte more about cross-linking: “Collagen cross-linking is a quite recent medical procedure that employs the use of ultra-violet light and drops to help slow or completely half the condition. Under topic anaesthesia, the top layer of the cornea is loosened and the riboflavin drops (vitamin B2) are dripped into it for 30 minutes. This light causes the riboflavin to fluoresce, which as the effect of strengthening the bonds between the collagen molecules–stiffening the collagen fibers, ultimately strengthening the cornea.”
While it isn’t a cure for Lezli’s condition, it does halt further progression of the condition, and has been shown to strengthen the cornea by around 300%.
“The results over a period of 3 and 5 years of a Dresden clinical study have indicated that in the case of 60 eyes researched, the progression of Keratoconus had been stopped in all cases. In 31 of the eyes there was a reversal and flattening of the cornea and visual acuity was improved. Similar success was found in a later study in which 281 eyes were observed for up to 6 years following the procedure. Only 2 of the patients showed signs of any further progression of the disorder, and they both responded successfully to re-treatment.”