The kids are off to school. Alyssa is in 7th grade and she is involved in tap, art, and being the usual soon-to-be-teenager. Happy 13th Birthday Alyssa, Oct. 24th! Tyler is now in his junior year at Whitewater studying marketing. He is happy to be taking courses of substance rather than the basics. He played for the school's club soccer team this fall, which is exciting for him as he has always wanted to play soccer. He is also still involved with his girlfriend Lindsey. He'll be flying to Kansas to see her for Halloween. Steve is still working in sales and has been with the company for several years now. He says it's been slow and blames it on Obamacare, which may or may not be true but it gives him something to point at. Chelsea was invited to her first party ("paw-ty") today for Cavaliers only. There were about 20 dogs from puppy to age 14 all in costume. I imagine it was about the cutest thing you could ever see. It makes me want to get another puppy.
I started my dialysis back in late July. My sister Robin and her two girls came out and stayed for a full week, so we got to do a few things prior to my going in the hospital and for a few days afterward. It was great to visit with my nieces, Taylor and Olivia, and as always to see my sister Robin, who is always there for me. Sadly enough, I feel like she always flies in when things are bad, and I told her one time she needs to fly in for something fun rather than in crisis mode.
My first eight weeks of dialysis went rather well, and I was just starting to feel my energy increasing when I ended up in the hospital. Several weeks ago I woke up with a very scary, swollen, and painful port area and a low-grade temperature, which landed me in the emergency room and then the hospital for nine days. They did blood cultures and also cultured out my port, and found out I was septic and it was infected. The infection traveled very quickly through my body in the blood stream because the catheter lays in that area of my heart, and it's very dangerous. Within 12 hours of being admitted, my fever was 103 and I had no blood pressure, so they called one of those codes and transferred me to ICU immediately, where I stayed for three days until I became more stable. Basically, I had to wait until my body was strong enough to get a temporary port put in, and then get it removed to have another permanent catheter inserted. The doctors are now thinking that I need to get some access other than this type of port, and they're hoping to try to insert one in my left upper arm in late November. The reason for delaying this is because they wanted me on heavy duty antibiotics for six weeks to completely clear the infection.
Dialysis isn't a painful thing but it is very physically draining because during your treatment there is a lot of fluid and electrolytes shifting around. Most of my treatments take 3-4 lbs of fluid off me over the four-hour session. I actually feel fine sitting in their chair; it's when I come home that I feel the effects. Also, as dialysis takes over the job of my kidneys, I produce less urine so I pee much less. Now it's maybe twice per day. I'm like a camel. When they remove my kidneys I won't pee at all.
You're probably wondering how I get to dialysis every day. Well, lucky me, I have a great group of friends. I think there are 16 in total who fill in the slots every Tues and Thurs for getting me to and from dialysis, and Steve usually drives me on Saturdays. The real nice thing about it is my friends take turns and it's good for me socially as I get to catch up with all of them. The other four days of the week seem to pass rather quickly. I usually have a doctor appointment or two, and I spend one day with Liz, my social work helper who comes every Wednesday.
I recently went for an MRI of my kidneys so the doctors can plan when to remove those, and found there was more growth but I was told not to worry since we're taking them out anyway. I will be meeting a surgeon on Nov. 2 to discuss when I will get them removed and the approach, which will now not be laparoscopic due to a lot of scar tissue I had developed.
Boy, it would be a great surprise to one day get a phone call saying "We have a donor!" I wait for that day, as then I'll no longer need dialysis. If anyone is interested in donation, it would be so much appreciated. It's all very confidential and I am not told if you call or don't call. It's much easier for a donor as it's a laparoscopic procedure that involves just a one-night stay. You can return to work in 1-2 weeks and all the medical testing, surgery, and follow-up are covered by my insurance. You can call the U of C number if you're interested: 773-702-4500. In the meantime, in two more weeks I go to Madison, WI, to sign up for their transplant program. After four months of waiting, it's finally here; I'll officially be on both the IL and WI transplant lists.
In my last blog, my eye was doing so well. I was actually able to see shadows, some light, and sometimes even color. In fact, for my first two weeks in dialysis I was seeing really good. Since then it has been going back to square one. A month ago the eye doctor said my retina was again detached and the fluid buildup underneath was causing me not to see. He didn't seem to think there was any change to the optic nerve tumor, and recommended that we start eye injections and laser treatments again every month. I had not seen anything in about 10-11 weeks and I was hoping this would work again. So, we had round one then and I went for round two yesterday. This time I walked away so discouraged because he was less hopeful than usual. He said everything looks exactly the same but my vision and ability to see any lights has decreased, which causes him some concern. I asked him about an eye treatment named proton beam therapy I learned about at a conference for VHL last Saturday, but he said no, it will not work with my problem. He's not ready to throw in the towel, so I'll still go back to him every month.
I only hope they can find a way to get any vision back so that I am not always in the dark. It's amazing how much seeing shadows here and there can make me feel so much more oriented, rather than seeing only pitch black or really bright white (even at night when the lights are out and my eyes are closed). When I used to see things like my arm or parts of the couch, it helped me to feel where I was in the world.
I can't believe it has been nearly three years since I lost my vision. I think it was Oct. 20. I'm still not comfortable with it at all. I'm not sure how many years it takes for people to become comfortable with blindness, but there is more than you can imagine to learn and there are so many resources to find that are not spoon-fed to you because of our system being so poorly funded and staffed. The technology for the blind is good but the economy is not, so the State has cut back on things I don't agree with like transportation and all the disability needs. For example, in over three years I've had maybe 7-8 trainings on how to use my blind white cane, which is like two per year, which is nothing.
However, I am feeling more comfortable with some other stuff, like I made a roasted chicken and vegetables dinner the other night and it wasn't hard to make at all. I can also make pancakes and eggs and stuff like that. It's not hard but it all takes so much more time because everything has to be done differently and with many more steps. For example, measuring ingredients is 10 times harder and messier when you're blind.
One last medical note. I don't need to do a followup on my brain and spine until Dec. 2, when I'll have a 3.5 hr. MRI scan. They even sent me an RX for Valium due to the length of the exam. That was awfully nice.
I'm spending lots of time with my wonderful neighbors and friends, including some old college friends recently. And I just went to the best Halloween party. The house was done really scary, the pumpkin martinis were the best martinis I've had in my life (they went down like water), and everyone got a witch hat to wear for the group photo.
Hopefully by my next blog I'll be out of this nightmarish spooky life and into a brighter, shadow-filled holiday season. What would even make it better is if the phone call arrives for my kidney transplant.
Thank you to everyone who has helped me with driving, emotional support, or just getting me out of the house for some good old fun this past month. I really do appreciate all that you do for me.
