My Retinopathy Experience

I know I have been thinking back to my Retinopathy Diagnosis several years ago. I know I started my blog around the time my Retinopathy showed up in my life. I remember I woke up one morning and noticed black spots in my vision which were small hemorrhages in my eye. I went to the eye Dr. that day because I was concerned. He took one look and said that I had a Retina Detachment. So I was told with my eyes dilated I needed to go to the Retina Specialist now.  So I left the office very scared. I know they rushed me back immediately when I arrived at the Retina Specialist office. The nurse comes in and starts to ask me questions. I know she said they believe I have Retinopathy and I knew that was most likely the case. The nurse then says to me I guess you should have taken better care of yourself. I told the nurse that was not the case and I did not deserve to be treated this way. I told her to leave her judgement at the door.

Next thing the Dr. comes in and looks at my eye. He says the good news is that I don't have a Retina Detachment but I do have Retinopathy. I also had quite a few new blood vessels which are leaking and hemorrhaging. So they say I need to be treated immediately. The Dr. says to help stop of the bleeding I need to have an injection into my eye. I know when he said that I was shocked that was what they were going to do. I have always had a thing about anything being close to my eye so it was difficult. I hated the injections they were not painful but they worked really well. Then I was told I needed to come back for more procedures which they used dyes which could show the blood flow in the eyes called an angiogram. They also did regular pictures and other exams. I know it was an overwhelming experience and I know I was extremely scared at the time. I decided that I would take things one day at a time. I also knew that I wanted to make sure my A1c was under 6.5 to prevent any further complications and I actually had been in that range for several years so I just needed to make sure I stayed in range.

I know they then said I needed laser procedures done which I was okay with. I had no idea that it could be as painful as it was. I also had no idea that my Retina specialist at the time was not following the standard procedure for doing laser procedures. He had me laying back in a chair trying to laser my eye but that did not work because my eye was watering the whole time. Normally you are in an up right position sitting as the Dr. does the laser procedure. I know my Dr. then told me I needed to have a Vitrecotomy since the laser was not working. I know that seemed wrong he only tried twice to laser my eyes. So I went to get a second opinion. I meet another young woman who had Retinopathy and she spent time talking with me. I found out that if you do have a Vitrectomy you could also need further surgeries and she had several. She told me to try and see if the laser procedures worked first and not to jump into surgery.

So I took her advice. I changed Retina Specialist and he did laser procedures and  a year and half later I have had not procedures done and no bleeding. So I know the surgery seems like a good idea but for me I knew I just wanted to avoid the surgery if at all possible. So for me it worked. I know my experience is not typical but we need to all communicate what we need. For me avoiding surgery has been a blessing and I today still have 20/20 vision and no new blood vessel growth in my eyes. I do work everyday to keep my eyes healthy by keep my Alc in a good range and exercising.

I know this journey was scary and I encourage everyone to share because I know I did not find any one sharing their experiences several years ago. It can be incredibly scary but I know for me I found taking it one day at a time made it all manageable. I also did a great deal of research which helped me have realistic expectations. I know I felt better knowing about procedures before they were done. So I made it a point to read up and educate myself. I know I don't know what I would have done without my friend online who shared her experience. I know I made the decisions I needed to make for me. I know I learned I need to advocate for myself as well. I know some of the best advice my Dr. gave me is to sleep on two pillows to help keep blood from flowing into your field of vision when sleeping. Most hemorrhages happen when you are asleep.  My first Retina Specialist did not share this advice so I felt he just was their for the money always wanting me to go for a surgery. I know I have never been happier to fire a Dr. than that one.

I know today my eyes are doing great and I hope to see them continue to be in good condition. I know I have learned so much from my experience. I also did not realize how strong I was until I walked this road alone. I know I hope everyone continues to share their experiences because it means the world to someone who is going through it completely scared. I know that my combination of therapies of injections, laser and keeping A1c down have all helped me to get my Retinopathy stable and stay stable the past several years.