A lot of things have developed recently, some for the good and some for the bad. My eye has had the most remarkable change, so why don't we start with the good.
Since my last blog, I started having better days with longer stretches of vision. At the end of August, I was at a pool across the street with Alyssa and the most remarkable thing happened; all of a sudden I regained my eyesight! I was in shock. It was not perfect but it was a huge improvement for me. I had not seen Alyssa's face in nearly two years and all of a sudden, there it was, looking right at me. I was speechless and so excited and I started eyeing everything so closely. I'd not seen anything like this in so long so I had to call the doctor. Like any sighted person, I grabbed my bag and towel, opened the gate, and walked toward home. Alyssa thought she had to hold on to me but I could really do it. Sure enough, I was able to make it all the way home and called the doctor, and they were as amazed and excited as I was.
I went in the following week and had photos and another treatment done. They were very impressed with what they were seeing. The fluid levels behind my eye had dramatically dissipated, and the vascularity of the tumors and vascular branches to the optic nerve had actually lessened and appear to have gotten smaller. The tumor growth has stabilized and I may not require much more treatment. We'll watch it and if it starts up again, we'll do intermittent treatments.
Unfortunately, I've had a few complications with some intermittent vision changes that are common to people who have had no vision for several years. It is a condition that does not come from your eyes; it is triggered from your brain due to the lack of sight. The brain feels it needs to send signals, so it sends random colors and images. They say these will come and go. It probably occurred to me due to my recent dramatic change in vision. I say my prayers every day that they will go away fast.
Regarding my help from the State, I continue to get assistance. At this time, I decided not to go in as an inpatient for training, which is weeks long and not specific to my needs, so I'm doing more training at home instead. My biggest problem is using the cane, so I need to find out how I can get more training on that here or if my costs will be reimbursed if I hired someone.
I am presently taking my third online course through Hadley School for the Blind, and at age 52, I'm finally learning keyboarding. It's actually kind of fun. I also got a really cool device from the State, which is a UPC code reader that scans all the items in my home that have a UPC label and will tell me what is in the box, can, etc., so I can finally "see" what kind of soup or crackers or frozen food I'm eating, as well as the calories, preparation, recipe ideas, etc. It reads to me everything I wanted to know and then some. Eventually it'll read prescription bottles, which is a great idea because every bottle feels the same.
My kidney continues to be my leading problem. As a matter of fact, I was placed on the kidney transplant list yesterday for the state of IL, where the waiting time for a donor is 4-6 years. I'm considering registering as well for the state of WI, because at the first of many patient educational meetings yesterday, we were told we may do better if we also apply in bordering states.
To avoid waiting, they recommend having someone be a live donor (a good match for me and willing to donate). They also recommend having a "swap" donor (someone who is very highly interested in donating, even if it's not for me), which allows two donors and two recipients to swap kidneys for a better match. Timing is key. If a fresh organ is donated to me and it's out of the body for 20 minutes or less, the rate of viability for that organ is 15-20 years. If it's out for longer but still warm, it's 10-15 years. For standard donations it's generally 5-10 or 5-15 years. For non-standard donations (drunk drivers, etc.), it's under 5 years. I have the option of declining a less desirable kidney but then I'll have to wait another 4-6 years for my next chance. People aged 55 and up are most often given the non-standard kidneys because their odds of living longer are smaller.
If my kidney function drops below 15% (right now I'm between 15-19%), then I'll need to go on dialysis if a kidney donor has not been found. We've learned my veins are too small for dialysis, so I'll need a graft made in order to do it. I'll only qualify for hemodialysis, which is done in a dialysis center 3 days per week, 4-6 hours at a time. With dialysis, if my kidney function gets worse, toxins build up, causing more fatigue, which makes the odds of going through surgery even worse. I also have to worry about my kidney tumor growing over time. So, I'd much rather have a kidney transplant than dialysis. It's a lot easier said than done, though, unless someone jumps in to donate. The process is free for anyone interested in donation, and you can even be out of state. I have all the resources you need. Just ask.
In the interim, I plan to go the Mayo Clinic this Sunday to finally determine the cause of my long-lasting problems with my skin, two prior blood clots, worsening kidney condition, achiness of bones and joints, and the relationship to the MRI contrast dye. Is it NSF? If it is, getting a transplant would definitely improve many or all of these issues. If it's not NSF, is it something that can be treated?
Summer ended up being fun and all too short. My visit with my family and friends was of course wonderful yet too brief. Tyler is back at college again and loving every minute, and appears very happy, which makes me very happy. Alyssa is also very happy and enjoying 6th grade. She has straight As with one B. She's still playing soccer and she's in an art club, tap, and Girl Scouts. She's looking forward to Halloween and her birthday later this month, when she'll turn 12. Steve is going to the Mayo Clinic with me. He works and walks the dog and is still working out. Suzanne has spent some 12-hour days with me downtown at doctors over the last few weeks - just a crazy, ridiculous amount of time, and I so appreciate her help. She is going to give me cooking lessons one day per week. I have no trips planned at the moment but I wish I did.
Have a Happy Halloween and hopefully I'll have good news to report shortly.
