Thursday, April 2, 2009
Optometrist Breaks the Bad News
This is the day that changed the way I will see and do things for the rest of my life.
It began as a normal day of work, class and meetings. I just so happened to have time and scheduled an optometrist appointment at 3:30pm for a check up. A couple months prior, I had noticed a slight blurriness in the top corner of my right eye. It never changed or worsened and only affected me when using one eye such as during eye make-up application. I didn't worry about it nor did I think it was serious enough to be worried about. I was due for my yearly eye exam anyway, having worn glasses since I was 7 years old, my corrective lenses have only become stronger over the years. However, the shock of my life came when the student assistant checking my eyes saw a detached and torn retina.
After the optometrist checked my eyes, she unfortunately gave the same diagnosis. I later found out that I was the first student under this optometrist at the Health Center at CSUN to have a detached retina. The optometrist immediately told me I would have to try to make it to an ophthalmologist that evening to have him perform the corrective surgery for this to avoid the risk of losing my vision. However, by the time we called their office, the only time they had available was the following morning. Since I had scheduled to take the GRE scheduled the following morning (three months prior), I was only able to get in the following afternoon.
Friday, April 3, 2009
Two More Doctors Opinions
After taking the GRE (and passing, despite all the anxiety about my eye), I went to see Dr.Yook, the recommended ophthalmologist. He too agreed that I would need to have a surgery immediately but had to refer me to a doctor who specialized in retinal surgeries. His office called Dr.Kim, a Retina Consultant in West Hills and thankfully, I was able to see him the same day. As I made my way to his office late that afternoon, I was not prepared for the severity of my situation.
Up to this point, the information given to me by the Student Health Center and through my own research mostly talked about laser surgery to correct this, which seems pretty standard. The news Dr.Kim gave me felt like the most devastating piece of information my 23 years had to digest up to that point. ::deep breath::
Basically, the surgery Dr.Kim needed to perform included such complicated surgeries (listed with detailed links under My Story) that he even used the phrase, "this is the end of the line when it comes the eye." In other words, seeing a retinal specialist like him is as bad as it gets before complete loss of vision.
Not only was the surgery intensely complex, but the recovery process from this surgery made it even more difficult part to deal with. Dr.Kim explained to me that my life would have to be put on hold and I would be unable to do anything besides rest. For two weeks, I would have to be in a face down position (parallel to the ground) to the correct positioning to help my retina stabilize. The technical explanation is that a gas bubble inserted into my eye is going to be pushing the detached retina back to its place for two weeks until it reattaches and stabilizes on its own. Due to the place of the tear, the only way to insure the gas bubble pushes the retina is to keep my head down, parallel to the ground and let gravity do the rest. I was not allowed to do anything besides rest, sleep and eat. No reading. No walking. Nothing you would normally do in your upright position. At this point, having realized the consequences of it all, not to mention hearing the price I would have to pay him, the hospital and the anesthesiologist ($6,000+), made me nauseous. As the doctor left the room to give my dad and me a minute to discuss and make a decision, I broke down crying, bawling about these crazy details that were turning my world upside down. The feelings of fear, anger, anxiety, and frustration about why this was happening to me were overwhelming. A million thoughts ran through my mind, ranging from how I would finish my assignments and papers for class, to who would take care of my work and internship duties. I could not comprehend how sitting for two weeks was feasible for someone as active and busy as I was at that point in my life. On the other hand, the thought of losing my vision in any capacity made those feelings of fear, anger and anxiety even more intense.
And so after thinking through and evaluating my circumstances, the decision began to look simple: attempt to save vision in my right eye or risk losing it.
I still feel extremely emotional thinking back to how difficult that news was to digest. Thankfully, the doctor did not see the same urgency to have the surgery done that day and needed a couple days to gather his surgery team. He decided my surgery would happen on Thursday the following week, giving me some time to prepare myself mentally for what was to come.
On another side note, the doctor made a recommendation to rent equipment specifically made for this type of surgery to make the recovery process easier. This chair and sleeping pillow would make keeping the neck bent down for two weeks a tad more bearable.
Thursday, April 9, 2009
Surgery #1
I think anyone who has ever had surgery can agree with the process being overall unpleasant.
As I prepared myself for the reality of what was to come for the next two weeks, I realized I had to put down all the pieces of my life I was juggling. On the other hand, after the 5 days to digest this better, I was able to prepare myself much more adequately than if I had to go through with the surgery the day I found out like I originally thought. I was able to pass over my work duties and explain to my professors and team members for projects my circumstances.
Next came the hard part. As those of you who have had a surgery can attest, the process is never pleasant. This being was nerve wrecking to say the least. I couldn't relax enough for the nurse to get the IV in my already small veins, I asked so many questions and made sure I knew everything they were doing to me. Thankfully, the nurses that took me to the pre-operating room helped calm me down a lot and the anesthesiologist was able to get the IV in my vein. After waiting for the surgery room to clear, off I went into operation. As soon as the anesthesiology kicked in, I obviously had no idea what was going on or how long anything took. All I remember is waking up and feeling so awful. My eye was throbbing with pain, I wasn’t allowed to pick my head up and I was unbearably nauseous. All I wanted was water and all I got was ice. All I could do was drone in and out of sleep with my head on a foam cushion with a hole for my nose. I felt so disoriented, confused and uncomfortable. As I began to regain some consciousness and my dad asked if I was ready to go home, the nurses walked me to his car and all I could think of was getting in bed and sleeping. That is just what happened when I got home. I slept for several hours at a time for the next couple days until the anesthesia finally wore off. During this time, I could not hold any food down and was in such discomfort and pain with my eye that I could not seem to find a comfortable way to even sleep. I actually had to go to the doctor’s office the day after the surgery, for them to take off the patch, check on my eye and give me eye drops. At that point I couldn’t walk without guidance, felt so nauseous and so out of it. That experience is hard to fully explain but believe me when I say it’s unpleasant.
Friday, April 24, 2009
Seemingly Stable
This day was exactly two weeks and a day after my surgery. It was the day I would get the news from my doctor about whether I could pick my head up and live life normally. I was especially excited because my grandparent’s 50th wedding anniversary was going to be the next day and my cousins from up North were going to be in town. The past two weeks were a challenge but I felt so good about doing such a good job keeping my head down all the time and staying positive along the way.
The doctors visit went well and he told me my retina was stable and I could pick my head up again. I would need to take it easy and not do any serious exercise or activities but I could read and do things upright. The only positioning I had to keep was to not lay flat on my back for any reason. The other thing he found during this visit was my lens being blurred by a cataract. Because a cataract is much more common and a simple procedure, my doctor was not concerned about that as much. I, on the other hand, was left to figure out how and when to get this surgery and have been forced to deal with a lack of vision in my eye due to this. My next check up appointment was set for the following Tuesday and I would be told how to proceed as far as being able to walk to regain my strength and doing things of the like.
Tuesday, April 28, 2009
Bad News Can Strike Twice.. in the same place
I had spent the weekend meeting with my group members to work on our project for class and came in for my staff meeting at work on Monday. Trying to slowly get back to my responsibilities and prepare to finish out the semester. It was a slight challenge having vision out of one eye, adjusting was slow and frustrating at times. I was still experiencing pain and discomfort in my eye from the surgery, felt weak and got tired easily. But I was staying strong and positive.
As I got to the doctors office for my final check up after surgery, I had my whole day planned to start some assignments and go to class, get caught up basically. After he checked my eye, he sat down and directly told me "I don't have good news for you." My heart sank. Not only was that the last thing I was prepared to hear, I could not believe that I fell into the 15% failure rate. The news to come would again break me to tears and frustration about my options, the timelines and the severity of the situation. ::another deep breath::
The basic gist of what happened is essentially due to a scar tissue that formed as my eye was healing from the surgery. Since this is such a rare occurrence in young people, the body reacts and the immune system tries to protect the eye from the foreign things happening. I guess if I was older, the risk of my immune system reacting like this and the scar tissue forming would have been much lower. To explain further, the scar tissue was peeling back my retina and would cause a recurrent detachment. If untreated, this will lead to the retina detaching fully, making vision recovery impossible. The doctor gave me two choices for how to proceed.
This part may get a little confusing because people seldom think about things in their eyes so bare with me. The first option the doctor gave me is to again insert a gas bubble into my eye, however, this time it would be a bigger one and would require a 6 week face down positioning to be effective (think gravity pulling the gas bubble creating tension against the detachment and tear to help it get back and stabilize on its own). However, this option had a high potential of not working since the first gas bubble surgery failed.
The next option is not a preferred initial method because it involves two surgeries from the start. This option would insert a silicone oil into my eye instead of the gas bubble. The difference is that unlike the gas bubble, the oil does not dissolve and needs to be taken out with another surgery. For me, this would create the need for three surgeries for this condition (four total including the cataract removal). The doctor was wiling to offer to split the $3,000 cost per surgery and only charge me $1,500 per surgery since I would need both with this option. This option was his recommendation and the option that seemed to make the most sense. Unfortunately, it would require me to continue the face down positioning for two weeks and continue to rest for one more week. This decision was not an easy one and especially with the circumstances and urgency, the doctor would have to perform the surgery later the same day but it was the most practical.
This surgery was a much more difficult experience. Not only did the short notice make me anxious, the whole process was much less smooth. By the time I was finally in the surgery room, we were still waiting for the anesthesiologist to come. When he arrived, he was unsuccessful getting the IV into my vein after four attempts. He then decided to put the mask over my face and had me breathe the gas deeply until I fell asleep. Thinking about it now makes me feel nauseous, it was the most uncomfortable feeling I have ever experienced. Waking up from the surgery was also unpleasant. I had the taste of the gas in my throat and mouth. I was extremely dizzy and nauseous, just overall uncomfortable. But nonetheless, I got through it and still had two weeks of recover ahead of me.
A side note to this story is that between my 9am check up appointment and 2pm surgery, I was able to have my dad drive me to campus and I had the chance to meet with my department chair. He took all my incomplete forms for the classes I would be unable to finish and said he would pass them on to my professors and granted me the approval under my circumstances. His understanding and compassion took a huge stress off me for all the work I have missed and would miss with the end of the semester being two weeks away.
And so the recovery began.
Saturday, May 2, 2009
Sacrifices
As I left the doctors office after finding out bad news the second time around and getting the prices the hospital would charge, I realized my bills were becoming far more excessive than I would be able to manage. I started trying to think of solutions and thinking of creative ways to make money, I had the thought of cutting off my hair and trying to sell it. After talking to my sister about the idea and having her research more information, the thought of asking for a donation for people to cut my hair off came up. And so, with the help of my boyfriend Dave and my sister, I invited all my friends and family members to come help me cut off my dreadlocks. Two weeks later, my family had a garage sale to help fundraise money again and throughout this time, I had many friends and caring people donate. As of the beginning of June, I was able to collect $2,000 toward my bill which was a huge help.
Tuesday, May 12, 2009
Stable with Oil
Today I found out from my doctor that my retina was stable and the silicone oil in my eye was working. I was also able to raise my head back up and was given all the restrictions I would need to follow to ensure my retina stabilizing while the oil is in place. I also found out that the minimum time for the oil to stay in my eye would be three months and my next surgery could not happen until August at the earliest.
Friday, May 15, 2009
Denial from Medi-cal
As I discussed my dilemma with After discussing this dilemma with many different friends, family members and the doctors staff, the potential of applying for the state medical assistance program, Medi-cal could work. After completing the forms, making an appointment and talking to the case worker, I was only told bad news. The requirements did not include otherwise healthy, single college students, despite of income levels. The basic elligibility requirements qualified those who are under 21, over 65, pregnant or have kids, disabled or blind. Basically, not me. And so my quest to find insurance continues.
Thursday, May 28, 2009
Health Insurance Application
Today I was sent denial letters from the various health insurance companies I applied for, such as Aetna, Blue Cross and Health Net. I was referred to the Major Risk Medical Insurance Program which charges more than regular insurance but not to a point that exceeds the cost of bills I would have. However, this program has a waiting list of three months and requires a down payment for the first month of insurance. At this point, my mom also tells me that she can renew her company insurance and has the option to add me on because I am still a student and the right age. After evaluating all options, that seems to be the best one to follow through with and I make the decision to go that route.
Monday, June 15-18, 2009
Health Care Rights
Over these couple days, I was compelled to write to everyone and anyone I could about my situation and ask for help. I wrote to President Obama, called the White House, wrote to a senator who is fighting for better health care. Here is a draft of that letter in case you are interested:
Hello Senator,
I was referred to you by a friend who heard about your work on the radio. I told her my story and she told me about you. I am in a desperate position to get help with health care and understand you have a passionate position in support. I hope you can read about my story and either help me or use it to help you fight and win.
For background purposes, I am a healthy, 23 year old woman who is uninsured and gets primary care from the Student Health Center. I was six weeks away from finishing my first year in graduate school before my emergency medical situation happened. On April 2nd, I was diagnosed with a detached and torn retina at the Student Health Center at California State Unviersty, Northridge. They referred me to a doctor that would be able to perform what they called an "emergency surgery." However, that doctor had to refer me to a retina specialist who would be the surgeon for my right eye.
The surgery I would undergo is the most serious and complex one that the eye can undergo. The doctor could only give me an 85% success rate for the surgery which was performed on April 9th. Being a cash patient, he lowered his price. According to him, the surgery would cost an insurance company $25,000 but he would charge me $3,000. The hospital also charged me $3,000 and the anesthesiologist took $500 in cash only. Not to mention the necessary equipment rental to help me stay in a face-down position while sleeping and 90% of the day for the surgery to be successful, which ran $300. Oh, and the eye drops which cost $97. Basically, the bill was starting to add up and quick. My family has been struggling financially and I was independent financially up until this surgery, living and working on campus.
The first surgery put me out for two weeks, after which I was ready to finish up my semester and find a new job (my term on campus was coming to an end). However, upon my last visit to the doctors office, he had really bad news. I fell into the 15% failure rate for the first surgery and would have to have three more surgeries to get my vision back.
The next surgery would require a silicone oil to be inserted into my eye to help my retina stay in place. The silicone oil will have to be removed with another surgery after the doctor is sure my retina can stay on its own, approximately 3 months. The silicone oil was put in my eye on April 28th and the recovery process was 3 weeks. I was forced to take incompletes in all my classes and once again put my life on hold. This surgery was no different on the payment end. The hospital too $3,000, anesthesiologist took the $500, the equipment was anohter $300 and the doctor charged me half price, $1,500. Mind you, this will repeat in three months. Another $5,000. Then, I will have to have a final cataract surgery with another doctor to get my vision back.
At this point, I have maxed out credit cards, put on several fundraising events and asked for help and donations from friends and family. The total bill has exceeded $12,000 and I have raised $2,000 so far. However, there is another minimum of $5,000 to be spent for the upcoming surgeries. I have applied for medic-aid help, insurance companies and am now considering applying for the CA Major Risk Medical Insurnace Program after denial from everything else. I am out of options and in a desperate need for help finding a way to pay for this unexpected, unpredictable and unpleasant situation I find myself in.
I ask for your compassion and expertise to help me figure out a best case scenario for something that has been extremely difficult to deal with. Any support you can offer will be greatly appreciated and will surely bring me one step closer to a solution.
I thank you for your time and look forward to hearing from you soon.
Sincerely,
Marina Adlivankina
Friday, July 24, 2009
Depth Perception Troubles
Today I was at work (starting my new position as a Graduate Assistant for a programming department on campus) and one of the other employees threw me a post-it pad. I stuck my hands out trying so hard to catch but the pad landed a foot ahead of my hands. Having vision out of one eye is truly challenging in many ways. The glare and double vision from my unfocused eye makes it hard to work all day, read for long periods of time or do other activities like I normally would. According to the doctor, monocular vision is completely legal to drive with and not a disability! You learn something new every day.
Monday, August 3, 2009
Medical Insurance ... Finally?
I received my new insurance card in the mail this past Saturday. My mom was thankfully able to add me to her insurance through work and as far as I understood, it was the type that my doctor accepts. However, when I called the doctor indicated under my name today, I found out they aren't coverd under the same type of insurance I recall my surgeon having. Then I call the doctors office and double check about what I found out, which was correct. Upon recommendation to call Blue Shield, the insurance provider, I was actually able to speak to someone very helpful who switched my primary doctor on the insurance to be the type of provider my surgeon accepts. So when I finally called to make an appointment with the new doctor I would have, I also found out that the referral (which is really the only reason I need to see that doctor, for billing reasons) would take up to two weeks and getting an appointment would also take two weeks. Alas, my hopes to get the surgery done before the beginning of fall semester would not work out.
Basic point of the story: Even when ou think you have insurance to get the things you need done, there will be a way found to make it more difficult for you, guaranteed.
August 20, 2009
Blind Testing
Today I had orientation for my graduate program. We had a meet and greet with professors, students and faculty. Then we went outside for some team builders. As we started, I knew this would test my limits and boundaries, just not how much. As we started working as a team to solve a problem, we initially had no restrictions. The second time we were asked to complete the same task, some people were asked not to talk. Still, I could gesture and relay my messages with non-verbals. The next challenge was that several people, myself included were blindfolded. The second that blind fold went on my eyes, I became very uncomfortable and nervous. I did not feel my other senses heighten, I felt vulnerable and weak. Throughout the activity, I tried to ask for help and was having a hard time getting responses. Even though I heard voices around me, I felt extremely isolated and lost. It was a very strange experience. Although one of the activities after this one involved being blindfolded again, someone was guiding me and talking to me so I felt more comfortable the second time around. I feel that being blindfolded became an emotional sore spot for me about the thing I feared to face, losing my vision. Although it was a good experience and did serve its purpose in bringing me closer with the other students, I will avoid being blindfolded for as long as I can from now on.
August 25, 2009
Finally found some luck!
I don’t recall mentioning this thus far but I want to share that my doctor literally told me that the cause of my retinal detachment was BAD LUCK. Just like that. Because it happened out of nowhere (no trauma or injury that caused it) and my vision was bad (I’m highly nearsighted), the only explanation for the cause was bad luck.
However, times have been looking more promising lately.
Since my insurance came in, I was able to schedule an appointment with a Facey (HMO group) ophthalmologist within two weeks (which took the office pulling some strings since they were scheduling a month out at the time). Seeing their doctor would allow the insurance company to receive verification that I needed to go back to Dr. Kim for my final surgery so they can cover it. I saw Dr. Shah under my new Blue Shield insurance and he referred me back to see Dr. Kim the following week.
When I saw the Dr. Kim on August 18, he confirmed my next surgery was ready to be scheduled and the oil holding my retina was basically done doing its job. The next step would be to get the authorization from Facey so the insurance company can pay for the surgery. This process was said to take up to two weeks. This is the part where I got really lucky.
On August 25, I called to check on the status and schedule my surgery. Dr. Kim’s office was able to schedule me in for September 3 which falls on the Thursday before Labor Day weekend, giving me the long weekend for recovery if needed. However, they needed the authorization paperwork from Facey to confirm as well as me to schedule the pre-op blood work with a primary health practitioner prior to the surgery. Previously this was all done at the hospital before the surgery so this step was new to me. So I began calling around to try and see a doctor within the next week and two days before surgery. Facey has facilities in Northridge, Porter Ranch and Mission Hills. All three places initially informed me that it would be impossible to get in with a doctor on such short notice; they were booked through mid September. After being transferred to an extremely nice lady in “Patient Liaisons” she listened to my circumstances and found a doctor who had a potential opening the day before my surgery. She told me it was too short of a time frame and I was giving her too short notice to work with. However, she said would call the doctor to see if she would be willing to see me. To my shock and surprise, the Dr. Chen was able to schedule me for this Thursday, August 27 morning at 7:45. I guess this is a time that she doesn’t even normally take patients but something the nice lady said to the doctor pleaded my case enough for her to make this work for me.
It’s amazing how great the small things start to look after the worst is over. I feel so hopeful about everything now. It is all starting to finally come together; financially, academically and physically with my health. I am so thankful for all the people in my life that helped me get to where I am and I don’t know how to express the gratitude I have for their help. I also hope those of you who have read this far have been able to become more informed and more aware, especially of preventive measures you can take to make sure this doesn’t happen to you. In case I haven’t explicitly stated it, GET YOUR EYES CHECKED. Get them dilated, get your vision corrected once a year and wear the necessary correction so you don’t risk your vision deteriorating. It is amazing how much we rely on vision and how scary it is to think about losing it. I hope everyone can take the steps they can to never get to that point.