I can't believe that in a few weeks the kids will be going back to school. As for our summer, we enjoyed our trip to Ft. Lauderdale with the Kennedy/Luppowitz family. Everyone got along great and I found a new favorite drink: the Moscow Mule, which is a combination of vodka and ginger beer, and it is quite refreshing.
Prior to the trip, I had quite a scare. I was having shortness of breath, extreme fatigue, major swelling of my legs, and 8lbs of fluid retention gained in several days. It was very scary as it happened so quickly. Before Florida, I had lab work done but never heard from my physician before I left for the trip, so I assumed everything was okay. Yet, my cell phone rang as we were waiting for our connection from Atlanta to Florida, with my doctor reporting how bad the lab work really was and how critical it was that I get back on a plane and go home. I said I didn't feel that bad any longer and I felt comfortable to go on with the trip, but I would seek medical attention if anything changed. He actually called me twice during the trip just to make sure I was okay, which was so sweet. I guess I really had him worried, and then he had me worry.
I wasn't sure until I got home what all was going on because he didn't really discuss it with me until then. Thankfully so, as I probably would have just been more focused on my health than I needed to be. I met with him that Friday, at which point he told me my kidney function several months ago was at 40%, but it was now at 15%, which is a sign for starting dialysis and looking for a transplant. I basically FREAKED OUT. I said, "Fifteen percent?? Is that with one kidney?" He said "No, that's counting both your kidneys." That is why he was so worried during the trip, because I have a lot of toxins in the body and it has to work very hard to go on, and that is why I get so fatigued.
Our goal now is to hopefully get me back to 20-30% so I can buy some time and look for a donor in the process. Over the course of June to the present, my labs have been at the 20% or 15% mark consistently, which means I'm closer to needing a donor now. He worries that if I don't have something arranged, the next time I have a rise in my numbers, it may not go down again and I may be put on dialysis permanently until a donor becomes available. He believes that is a much harder course to take because dialysis is very hard on the system, especially with all of my other medical problems.
So, I am asking you, your friends, your families, if anyone knows of anyone interested in being an organ donor, who happens to have blood type O+ and is healthy (no diabetes, high blood pressure, cancer, etc.), and is very serious about this. Please call me. A workup will be done prior to the final decision, and all medical fees prior to and including surgery and post-op will be paid for through my insurance company. I know this is a very heavy commitment and decision to make, so please take your time and don't feel pressured. It's very important that I find the right person who really wants to be a donor. The odds of people backing out are 50% up to the last day, so I'm looking for someone who is very committed.
Moving on to a brighter topic, did I mention I found a new favorite drink during my vacation? LOL. So I did.
For another brighter topic, how about "Cooking with Kim"? Liz, my blind state-appointed helper, recently had me buy ingredients to make Sloppy Joes and wanted to make sure I could hand-chop everything safely, without cutting myself. So, I showed her I could properly cut green peppers and onions, and clean it up, so she said to try it using my chopper from Pampered Chef, and to let out all of my aggressions on the chopper. I loaded it up with the vegetables and started pounding on it, and before I knew it, the food chopper went airborne and there were little onion and green pepper pieces flying all throughout the kitchen, along with multiple chopper parts because somehow it broke apart. We had to call in her driver to help us clean up the gigantic mess. We were laughing so hard. Fortunately, everything tasted great when it was all done, but when Steve came home he said, "Don't you ever cook again," because apparently we didn't clean it up completely before I had to run out to the doctor. It was a smelly, oniony hell for a while. But I did use stove, even though I was so scared, and I didn't catch anything on fire.
Other things that kept me busy this summer are: I met more visually impaired people and even attended a blind weekend retreat; read 20+ books; did more self-education; hired Christina (Lori Pritchett's daughter)to help me organize my multitude of papers and everything in the closets, which feels so good (she's worked here five days and I'm sure we'll miss her when she goes back to college); hung out with the kids; went to the pool and beach with Alyssa; went to Lake Geneva with Tyler; went to the movies; went to a Lake Forest beach party; went to my book club; DiTy, Patti and Nancy came out; Lori Pritchett came out; Mindy's been helping me out a lot and her daughter might be able to help me out soon; and I went to Ravinia...just to name a few.
Regarding my skin, as much as I love the summer, I've been trying to avoid the sun. I've not gone outside in weeks because I'm afraid of the consequences. I can go out in the sun for two hours and get what most people get in a week in a tan. I wear a 50 or greater sunscreen and I just absorb it very fast. In addition, my doctor said it may aggravate the dryness of my skin. Basically, my nephrologist feels my skin condition is a reflection of my kidney function being so poor, and when you have NSF, it worsens as your kidney function worsens. He could tell between three months ago and now that it's so much worse. The pain is worse, the skin is worse, and my joints are killing me. It's amazing how much it's changed. He thinks I need to go to Mayo Clinic and get it diagnosed once and for all, because then we'll know for sure what we're working with, although he's personally convinced it is NSF.
Regarding my eye status, I continue to go to U of I every 3-5 weeks for my laser treatments and eye injections. As of now, everything is status quo. My tumors remain unchanged in size in the past three months and the fluid is nearly gone. The doctor is still hopeful that the treatments will possibly shrink some of the tumors down, but is very happy that nothing has grown since we started, and, in fact, they have shrunk in the past five months. Unfortunately, my vision remains for the most part unchanged. I have a lot of good days per month, but a good day may mean an hour of seeing shadows. I see something almost every day, some days longer than others. A few days ago, I was able to see glimpses of color, the silhouette of my face, and Alyssa's coat and her jaw. When I brush my teeth, I can see my arm going up and down, but nothing useful in terms of getting around in life in general. It's not enough to keep me from having to hang on the walls when I'm walking, but it's enough to make me realize I'm not alone in the dark. It's really weird being in the dark, especially when it's quiet. It's almost like you're invisible or in another dimension.
I'm presently looking at a facility where I can go and learn more hands-on about being blind. It's a residential setting where 42 women and 42 men stay in dorm-like rooms, and they have classes offered from 9-5 daily for 14 weeks where you can improve your cane usage, cooking, cleaning, organizing, typing, computer skills, etc. You can leave Friday afternoon as long as you are back by Monday morning at 9am. They're going to try to get me in the late August or early September session. It's right by my doctor's office and I can leave for doctor appointments if needed.
It seems like summer just started, but Tyler leaves for school on August 15 and hopes to make the soccer team this year, and Alyssa starts school August 21. We better start using up our pool passes.
Before the summer ends, my entire family is coming in to visit, as well as Sheila's family, and we plan to go to the pools, go to the beach, and basically just spend a lot of quality time together.
Hope you all enjoyed your summer. I was hoping to have seen more of you and unfortunately time just goes too quickly. It was great to see those of you that I did.
