Compared to my Debbie Downer last blog, my life has much improved. These past three months have been so much easier for me and much more tolerable. My kidney is doing great and now I only get labs every other week. I used to go to the doctor every three weeks and now it's every other month. It just makes life overall easier to have fewer doctor visits. My hemoglobin has gone up to 10.2 and so now I am feeling much more energetic and less anemic. I don't just spend the day on the couch anymore. I do take a lot of anti-rejection pills yet I'm probably getting more used to them and don't have as many side effects. My worst ones are itching, insomnia, weird joint pain, hot flashes, and headaches. But what a difference from three months ago. I'm so much better.
I'll find out about the other kidney removal plan when I see the doctor in October. As you can tell, I'm in no rush.
In mid July I was referred to a glaucoma specialist for eye surgery as my eye pressure had still not come down. He performed laser surgery to the back of my eye to create a hole so that fluid would not build up in the eye chamber, which makes the pressure high. It was very painful, good God, but it worked and my pressure is now in the low 20s. Once it goes under 20 they'll look at taking me off some of my eye drops.
Two weeks ago I went my retinal specialist at U of I. Upon seeing my retina, he was shocked that all of my tumors had started to shrink, and the fluid that was causing my retina to be detached was being reabsorbed. He said this was all due to the radiation treatments I received in late January prior to the transplant, which are now starting to work. It took almost seven months to start to work and they say it could work for six years or more, but they just don't know how much vision I'll get back. Only time will tell but this is just the beginning. I'm hopeful that after all the injections and everything I've done to this stupid eye that I'll eventually have enough useful vision to get around. Already I am noticing the change.
In the past 10 days, when I look straight forward, there's an area down low and to the left that has bright light coming in. When I pick something up or view things out of the lower periphery, I can see it, like my toothbrush, phone by my ear, or the floor. The coolest part is if I hold my phone on a certain angle around chest level, I can put on Netflix and see body images and things moving in color. So I'm just hopeful that this will continue and maybe I will still be a miracle yet. We shall see.
I've not had any cane training since last November, which is just par for the course for getting help or education from the State. I did find out that there is a place in Michigan that's an in-house cane training facility where you stay for a week. They start from where you are with your cane training and see how much farther you can progress in a week. They require you to be able to walk a minimum of four miles per day during that week. Depending on how quickly you learn, you may pass cane training and qualify to get a service dog, which is another process. Part of that is you have to be videotaped showing that you can do everything with a cane, because if the dog gets sick or injured, you need to be able to cope without it. I'm going to enroll in this one-week program as soon as possible so I can finish it before the snow falls, because I'm not getting anywhere at home with cane training.
In addition, I'm trying to learn typing with a self-training program on a Mac computer, but the program only works on a laptop or desktop PC. I was just made aware that the state of Texas has a facility called Texas Computers for the Blind where I can get a used laptop for a nominal fee. The ones available now are not as good as the ones due in January, so I'm opting to wait. Beginning this January, they will be more updated computers and come completely loaded with 25 GB of blind software. Mine will have Windows 10, a bill pay service, and tons of different programs that will be made to use with descriptive narration, and I will be taught from a self-learning video or directions for each program. When I last looked, it comes with 140 movies with descriptive narration and 385 books with audio narration.
My final blind area of need is cooking. I will try to learn that at the Illinois Center for Rehabilitation and Education (ICRE) downtown. It's a 13-week in-house program, but if I do my computer training and cane training separately, I probably will not require all 13 weeks to complete the cooking and independent living skills. I could probably do it in three weeks.
Over the summer to pass my time I've probably read 40-45 books and watched four series on Netflix, in addition to listening to many educational blind podcasts. It's funny how different my life is from everyone else's.
Steve arranged to take the family and Lindsey, Tyler's girlfriend, for the day pontoon boating on Lake Geneva for Tyler's 21st birthday. For his actual birthday he went to Tampa to celebrate with friends.
The timing couldn't be better when a friend came in from California. Dee and I have been friends since high school. I was finally feeling good enough to get out and do something fun when she and her daughter came for the day and we went to Independence Grove for lunch. Hopefully I'll get out to California someday to see her and her family. Later that week I went out with DiTy and Patty for lunch. Three weeks later I went to dinner at Bahama Breeze with Lori Pritchett, DiTy, Patty, Nancy, and Jeryl from college. The book club also kept me busy.
I got to celebrate my half birthday with my neighbors, which is always so much fun. There's nothing like "Christmas in July." Since it's hard for me to hear in crowded restaurants, I picked to do it at someone's house. In addition, I got to plan the menu and picked my favorite foods, including my favorite banana cheesecake from the Cheesecake Factory. It is so incredible. After eating we enjoyed a bonfire and I got to open all my presents. It was perfect timing as I received everything right before a trip to Florida - a sundress, sweater, two summer shirts, and a gift card.
The transplant doctors had told me I could go away on vacation after six months if everything was stable and there were no blood clots. As there was so much improvement in my status, I got clearance and on my six month anniversary of the transplant, we left for a trip to Destin, Florida. As a group, there were 16 of us divided into two condos on the beachfront. Our unit had Tyler, Lindsey, Alyssa, myself, Sheila and Barry and their kids Devin and Austin, his girlfriend Carly, and Sheila's sister Sandy. The other unit contained neighborhood friends. It was loads of fun.
The weather started great. We spent our first days going to the beach every day, swimming in the pool, walking the beach, shopping the downtown area, and eating and drinking. The kids also went boogie boarding. What can be better than that? We tried to get a nice family beach photo taken for a possible Christmas card, which you may or may not see later. The last days it mostly rained but we did not let that stop us. The kids did a marathon Netflix day and played laser tag and Heads Up, and we shopped and went to Margaritaville. It got a little wild with Sheila and I trying to dance like the kids with their many little moves. We looked up a video of Jimmy Fallon and Michelle Obama to steal some of their dance moves. In addition, we learned the Dab. There's no chance of us showing up on Dancing with the Stars.
On the final day we were so excited to see the sunshine. We rented a pontoon boat and went to a place to anchor called Crab Island. It is an underwater sandbar on an inlet that is only accessible by boat. This was my kids' favorite place of all as there were many hermit crabs under your feet as you walked in waist-high water to water attractions (inflatable obstacle courses, slides, food vendors, a floating bar, etc.). It was really cool. The kids climbed atop one of the floating restaurants for lunch. It was funny to hear ice cream truck music coming from a boat vendor with big coolers of ice cream channeling through the sandbar area.
We saw the weather was worsening and turned toward the dock, but then dolphins started jumping and swimming right next to our pontoon boat. It was so awesome. The kids were all screaming "They're right there!" Tyler said he could touch a dolphin. When I heard a big splash I thought one of them jumped by my face, but it was Devin who jumped in wearing flippers and a mask to swim alongside the wild dolphin. It was the coolest thing and I can't believe he did that. I don't know how many people would do that without fear, but he had a big smile on his face. These were full size dolphins - I wouldn't do it, not a chance. But we were all excited and happy, and as we were dancing and playing music the sky opened up and it started pouring down rain. We all put towels over our heads for like 25 minutes as we raced back in to return our boat. We were so cold.
For those of you who have never been to Destin, it's in the Panhandle and it's the same time zone as Chicago. The water was so clear you could see down something like 12 ft. The sand is so white that it makes the water a really pretty aqua green. Every day if you looked out in the ocean past where you would be swimming, you'd see dolphins just jumping in the 87 degree water. We also saw jellyfish and found sand dollar pieces. As the storm was approaching, the waves were so big, maybe 4-6 ft. tall. A big thank you to Sheila and Barry for making this all possible.
Labor Day weekend I spent the afternoon with four of my sorority sisters at Arlington Park Race Track. Believe it or not, none of us really knew what we were doing and we bet on names and lucky numbers, but we all came out a winner. It was so fun to see everyone together. It seems like no time has passed even though we've been out of college for 31 years. I can't believe it's been that long.
Alyssa started school on August 19 and Tyler started Sept. 6. Tyler had his first club soccer game of the year on Sunday and we all went to watch him play. I'd never seen him play club soccer before in college and now he's in his fourth year. Next weekend Sheila and Barry will be in town and they'll bring Alyssa and I up to visit Tyler at school. My brother Jeff, Cindy, and the kids are coming for a wedding in a couple weeks and I'll be spending a few days with them. I look forward to it as I don't often get to see their family unless they fly in when I'm sick.
This summer went by so fast. Within the next month or so I'd love to have my donor Maureen and her family out for a barbecue or catered dinner now that I'm feeling better. I'm totally looking forward to spending time and getting to know her and meeting her family. Alyssa is also excited as Maureen has a daughter her age. I had planned to do something earlier this summer but didn't feel better until the end of July.
Again thank you to all who helped me out during my post-transplant days, to the many friends and neighbors who brought over dinners or just stopped over to say hello, to all of the calls from relatives and friends with concern, to Suzanne for always being there to listen to me whine and drive me everywhere in her new Tesla, and to Sheila and Barry for making this summer such a memorable one with the Florida trip and visits as they gave me something to look forward to as I recovered. Also a big thanks to my kids and Lindsey for making this summer bearable and especially for Tyler and Lindsey staying up with me when everyone else went to bed. Thanks also to Robin for being the best sister and getting me through the tough days and enjoying the good ones with me as well.
I hope everyone enjoyed their summer. It was a nice hot one. Let's hope we're in for a warm fall and a nice mild winter as well.
