Whoops, did I say kidney? That shows how much it's on my mind. We just passed Dec. 21st, the first day of winter and the shortest and darkest day of the year, but that means the days ahead are going to be getting longer and brighter. So, welcome winter, and Merry Christmas and Happy New Year to all, as this will not only be my blog but my Christmas card as well.
Mayo Clinic has come and gone and it appears that we have found that I have all the signs of NSF, including a significant level of gadolinium contrast remaining in my tissues. I have not had an MRI with contrast in over 2.5 years so this is really stuck in my tissues, and there's absolutely no reason that it should have happened. Everyone at U of C is treating me as if I have NSF, although they may do one more biopsy just to prove it.
Upon returning from Mayo Clinic, I developed a rather unusual rash. It's my chief complaint and it has traveled everywhere, starting on my chest, and it's still on my arms, my face, and the top of my feet. It is horribly painful and blistering, and possibly viral (but not contagious), yet none of the four doctors I've seen have come up with a diagnosis, which is rather frustrating. In addition to the rash came 16 lbs of weight loss, more fatigue, decreased appetite, joint pain, etc. I am just one miserable soul. I sleep between 11-13 hours per night and can't get myself up until the afternoon. Between that and my face breaking out with the rash, I feel like a teenager again.
Thankfully, I do get remarkable vision every now and then, between the shades of gray. At a party last weekend I saw people's glasses and their sweaters. If I looked at someone directly, I couldn't see their faces, but I could tell who was who. Last night I watched a movie on my iPad because the shadows were so good that I could see people moving on the screen. I didn't want to go to bed while the vision was good; I might as well take advantage of those moments. I still get the eye injections every 4-6 weeks despite no change to that area (no better, no worse).
The majority of my life lately has been focusing on doctors about my combination of issues. The GI doctor feels that due to my severe pancreatic issues, I absorb nothing when I eat, so he put me on an enzyme to help with absorption. Since then, I've been feeling a little more energy. The kidney doctor says my kidney is the problem, and the skin issues, itching, fatigue, achy joints, lack of focus, and lack of appetite are all very much related. He says once I start dialysis, after about a month I'll feel better. In the meantime, he also found that an acid base level in my blood is completely off target, so he put me on a medication that may relieve my symptoms and buy me a couple months while I look for a transplant donor. My internist wants to get at the primary problem of how to fix the joint pain. She recommends getting steroid injections in my hand and wrist joints to relieve the pain and stiffness. There's also an area in my neck where she recommends I get the injection, but I don't feel comfortable doing that one. I also went off Ritalin because that can sometimes react with other drugs and cause skin rashes and weird sensations.
I met with everyone in terms of the transplant and I'm waiting to decide when and where to do dialysis. Is it going to be done as a nightly routine in my home (peritoneal dialysis via the abdomen), or should I get hemodialysis, which is three days per week for four hours at a clinic? The main difference is that your eating and drinking is more compromised with hemodialysis because all fluids are retained until you go back to the clinic. With peritoneal, it's flushed nightly, but I need to be home every night by 10pm. The best option sounds like the kidney transplant, but it's not easy finding a donor. The doctors will tell me at the next meeting everything about what my body can accept in terms of an organ.
Regarding my balance issues, one of the two tumors in my cerebellum might have gotten larger, but my doctor said we shouldn't operate on it because it may not resolve the problem. He thinks it might be an ear problem and suggests I visit an ENT.
For the holidays, the kids got out of school on the 19th and we started off with a birthday celebration for me at my neighbor Suzanne's house. Per our usual birthday routine, the girls will celebrate my birthday again over dinner on Dec. 29. As for the family, we plan to go to the usual Christmas Eve and Christmas Day parties with my cousins and aunts (about 30 people). I truly wish my brother and sister lived closer so we could get together for the holidays. During the break, Tyler will have his girlfriend Candice out for a week to show her the sights of Chicagoland, tour the lights downtown, ski, etc. He will also be getting his workup done over this Christmas break. Alyssa is just enjoying the spirit of the season and already hanging with her friends and seeing movies. I've seen her about an hour since school's gotten out; she's a little social butterfly. I took her to see Annie (the musical) downtown as a surprise for her birthday and she loved it, so I feel like I'm back on the "good mom" list again. We also did some baking and wrapping together.
I do have to say, our house is rather festive looking. The tree is up and lit this year and we get many compliments on it. There's even a train underneath with real smoke, and all of the extra decorations around the house are up and out of their boxes, which hasn't happened in years. My friends keep asking if we're planning a party, because it looks like it, but we're not. My elves and I have been busy, too - all of my gifts are already bought and wrapped and under the tree.
So sorry I'm unable to do Christmas cards this year. I think I'll go on the every other year plan. I do love receiving cards so please keep sending me yours. I will add a picture to this blog site as soon as I can get my children to stop moving for one minute to take their photo by the tree or something.
Suzanne again wins the Doctor Driver Award for the month. She peaked two weeks ago with 21 hours in a week. This week it was 16 hours, and that's more of an average week. I'm really lucky for the help I have from all my friends and Steve. I want to thank Darlene, Mindy, Barb, Angela, and Steve for all your help driving to doctor appointments. To Delynn, a special thank you for driving Alyssa to her needed destinations - tap, school, art club, etc. You truly are a great friend. I'm also so happy to have seen Sheila and rejoined with Cathy from high school over Thanksgiving. I really miss my college friends and I'd love to see you soon as well. Time flies so quickly, and as we all know, unless you put a date on the calendar, the opportunities will fly by.
The perfect time to get together will be between Christmas and New Years, while Steve, Tyler, and Alyssa are in Michigan at my in-laws without me. Like the movie, I'll be "home alone" for four days. Fortunately, my "I've fallen and I can't get up" machine arrived this week, plus I'll have my dog Chelsea to keep me company, but I'd love some visits with friends if you are free.
Thanks as always for all of your thoughts, prayers, and help. Whether it's the smallest of favors, a phone call or a ride across town, somehow everyone pulls through for me. I don't know what I'd do without my friends. I can't express how lucky I am to have all of you angels in my life. Santa is surely watching and hopefully you'll get everything you want for Christmas.
Hoping that you all had a wonderful Thanksgiving and that you are having a safe, merry and healthy Christmas, and your 2015 will be happy and prosperous.
