December was the University of Chicago month for me. As previously mentioned, the university recently opened a VHL clinical center. I was one of the first 10 lucky patients to go through and meet the panel of doctors. It took about 3-4 days to meet all eight, but it was certainly much more comforting to hear VHL spoken as a common term instead of an enigma. Usually I would spend half of my appointments explaining what my disease is to my doctors, and now I feel like I am in good hands and they can answer my questions for me.
The way it works is you see the various specialties, and then all the doctors meet together and discuss your case to decide the best plan of action and medications to use, based on what's going on in other areas of your body. All eight doctors now know what's going on, and I no longer need to fill them in, which is key for me.
Not only have I found them to be knowledgeable, but at least one doctor from each specialty calls me at least once a week. They seem very concerned and willing to make changes to my present medication schedules to make things not only easier for me, but to make me feel better. I'm trying to wean off my steroids, for example, and they are working very closely at monitoring that process and how I feel.
Through my appointments, they found that I have a hypothyroid problem. They also found that my kidney artery is constricted, and are recommending surgery for that on Feb. 1, as they feel it has caused my blood pressure to increase and kidney function to decrease. They're trying to improve my digestion by giving me different enzymes for my pancreas to take when I eat, which will also give me energy because I'll actually absorb what I eat. Neurologically they're not doing anything differently.
They are saying I never should have gotten the lifetime gamma knife dose (2+ hours of brain radiation) that I got back in 2007 or 2008 because I caused myself damage to the area surrounding the brain stem. The radiation was supposed to shrink the tumor, which had a cyst attached, but the cyst ended up absorbing more fluid than the tumor, causing the tumor to shrink and appear to be smaller. I ended up with more swelling down the line, and all the swelling and damage is irreversible.
On a lighter note, in mid-December I got together with my college friends for a birthday gathering, as we are all entering that lovely new decade of life. Eleven of us were celebrating birthdays, including Ellen, Patti, Carrie and I. We went to Seasons 52 and we all had a blast. It was so much fun.
Then I was off for my last-minute Christmas shopping. I had to put some little elves to work this year (tee hee hee): some high school girls to shop for Tyler, and a few friends of mine to assist with Alyssa. Thank you Santa's Helpers...you know who you are.
Christmas was our usual tradition. We get dressed up; spend the evening with 28 of our closest cousins and aunts and uncles; eat, drink and be merry; open a few gifts; go to bed; open our gifts from Santa and each other; and then go back to another cousin's house and spend it with the same 28 people eating, drinking, and getting merry again. It sounds crazy but we do it every year. Next year we decided to spend Day 2 in our pajamas.
The kids had a great Christmas break. Sadly enough, they didn't have snow here, but they did make a trip up to Wilmot Mountain where Tyler taught his sister Alyssa how to ski. First he pushed her up the mountain, then they used the tow rope, and then the ski lift. Her first time down off the ski lift she went completely straight down -- it was not the bunny hill and she was flying. They both had a blast, and it was good for Tyler because his knee was able to withstand the pressure despite having had torn ACL surgery not long ago. Alyssa also had play dates over the break and Tyler just hung out playing games from the couch.
Alyssa and Steve also took a short trip to Michigan to see Steve's brother Mark and his son Charlie, who is Alyssa's age, and Steve's parents. They did some sledding, shopping, a museum, ate, played games and relaxed.
I was definitely ready to ring in the New Year, yet I didn't quite find the energy to stay up past 11:00, or to go out for that matter, so for the first time in a loooong time, the Gillespies stayed home and watched the countdown on TV. Maybe this will bring me a better year.
Things were going well until I got the flu/bladder infection/sepsis on Jan. 5. Whatever it was, it was nasty, and it lasted until this past weekend. You do NOT want to get this. I had night sweats, hallucinations, fatigue (I could not sleep less than 14-16 hours per day), no appetite, I couldn't focus, and all my blood work was totally off track. I'm going back tomorrow for more blood work, but today my white count is 24 and my kidney function is the worst it's ever been. I'm on two antibiotics and they're changing my meds because the illness is interfering with them. My potassium is 2.7, which is so low, so now I'm taking 15 potassium pills per day. Even more frightening, besides the hallucinations and other changes, was that I got no return phone calls from my internist and his nurse was out sick. I left daily messages. I'm debating whether to change doctors.
As of today, with my eye it's the same old crap, sadly enough. I saw the U of C eye doctor on New Year's Eve and Dr. Cohen today. My eye pressure remained low at both appointments and I am off of all glaucoma drops for two weeks. My eye is no longer bleeding and they say it looks about the same as it did three months ago, yet there may be some subtle changes in growth. The optic nerve tumor appears to be completely surrounding the nerve, and Dr. Cohen thinks it's blocking the signal from reaching the brain. When I asked why my vision is not what it was three months ago, he said, "There have been a lot of changes in your eye with the bleeding, injections, glaucoma, pressure, and it's hard to say if you'll have good days and bad days intermixed. Just know that you fought a good, long battle, and we've tried everything we could have tried up until now." Then he said, "I'll see you in a month and hopefully you'll have better days." He doesn't know what causes some days to be better than others. He had no answers at all, basically. It's just very frustrating to me and it doesn't make any sense. If I can see the TV one day, then why can't I see it the next day? The thought of going blind freaks me out, and there is nowhere to get help. And then how do you get to the help, and how do you learn things like Braille? It's just going to have to get better.
I meet with the vision rehab lady this Wednesday. She'll bring me more gadgets that she thinks I'll find helpful, for example, Dragon speech recognition software that will help me use the computer. She is trying to get other people to call me but nobody calls, and there's nobody for me to call. It's like the weirdest system. The state has no money, and if they had it, I don't think they'd give it to me anyway.
Next week I see the endocrinologist and ENT. On Feb. 1, I'm planning to have a stent put in my left kidney. It'll be a CT-guided angiogram. They'll put a wire up through to the right renal artery, and then see exactly how tight and constricted the vessel is. They say by the x-ray it looks 50-75% constricted. They can't put a balloon in, but rather they'll put in a stent to hold it open, but they'll only do that if they think it's safe. Because I'm allergic to the iodine in the CT-contrast, they'll give me 150 mg of Prednisone and some Benedryl. I'll be in a twilight. Last time they did it I still had a reaction, so I'm nervous.
Hope you're all staying healthy and warm during this chilly January. Hope your holidays were lovely. Please call -- I'd love to hear from you.
