I hope you all had a nice Thanksgiving and are enjoying the start of our hopefully balmy winter. November brought a lot of medical dilemmas that are all quite random, yet required two hospital stays, several trips to the E.R., and countless doctor visits.
The majority of November I was unable to see anything other than be aware of light coming in from a window. Finally, the last five days, my eye is starting to rid itself of the blood and I'm starting to see shadows again, which I hope continues to improve and brings me back to my original level of vision.
Earlier this month I was diagnosed with glaucoma of my right eye, and now take eye drops and several medications to keep the pressure down. I tried a chemo called Avastin that was directly injected into the eye to keep my eye from forming new vessels, and hopefully preventing it from further bleeding. I've also had to have fluid removed from my eyeball when my pressure was too high. But I'm glad this whole eye thing is starting to resolve!! They day before yesterday I was able to see the shadows of people on the iPad during a show. That's a major improvement for me.
Additionally this month, I started running fevers and had night sweats, chills, and vague flu-like symptoms. When I went to the emergency room, I had a white blood count (WBC) of 40,000, which is extremely high (5-10,000 is normal). They treated me for a bladder infection and sepsis. I was on IV antibiotics for 5 days and oral for 5 days. 24 hours after finishing my antibiotics, I went back for repeat blood work and urine testing and my white count was 37,000 -- almost no change.
I also had an endoscopy and colonoscopy done during this hospital stay at Lutheran General. I have to say, I was happy to check this off my list, especially when I had to drink 16 glasses of Go Lightly prep to clean out the colon, and I had to call every time I got up for the bathroom because I was connected to a monitor and IV, and I couldn't see. I am never doing this again. It was the worst night. The tests themselves are easy -- it's the prep that's not. I got Propofol (Michael Jackson's sleeping aid) during the test. After sleeping only two hours and spending my night in the bathroom, it was incredible to receive the Propofol. I probably slept 40 minutes for my test and woke up feeling like I slept 8 hours and fully refreshed. No wonder he got hooked on this stuff.
My doctor said to make an appointment to see him that following Monday after Thanksgiving. Sadly enough, I couldn't wait until Monday as the Tuesday prior I started having pain in my left leg and shortness of breath. This continued to increase and sent me to the emergency room on Friday, where I was told I now have two new blood clots -- one in my left calf and one in my left groin. Hard to believe but...even with my elevated white count and swollen, warm, painful left leg, full of blood clots, they sent me home and told me to follow up with my doctor on Monday. They wrapped my leg with a compression wrap and told me to rest, relax, and elevate my leg on a pillow. Needless to say, by Monday my leg was much more swollen and painful, and when I got to my doctor's office, he sent me directly to the hospital to be admitted, which is where I spent the last six days.
Throughout the week, they have drawn about 50 tubes of blood in hopes of finding why my blood is making clots, especially when I have a disorder that causes me to bleed. In addition, they have been checking on my WBC every day and will do a bone marrow biopsy or bone scan if my white count elevates again, as I had very high counts for nearly a month that did not respond to antibiotics. They told me I could have leukemia, which is almost funny. They're still trying to find out why I am not anemic if my hemoglobin has dropped from 12.8 on 10/29 to 8.5 the last three days.
As for the bloody blood clot, by Monday, the clot was now connected to the one in my calf, and extended all the way up to my renal vein, which is near the belly button. It basically starts 4 inches above my ankle and travels all the way to the kidneys, where I had a filter placed in Hawaii to catch the blood clot should it ever break free, to prevent a pulmonary embolism (PE). They checked my abdomen and right leg for other clotting and everything was negative.
Normally they treat and remove blood clots with thrombolytic drugs, which are injected into your vein and break down the clot. They were unable to do that with me because they were afraid that as these drugs got into my system, they would also break any clots from old surgical sites and I could end up having a stroke, or my other tumors might start to bleed. So unfortunately, I will have these clots for life and the goal is to stop them from spreading past the filter. They also hope that the blood thinners will keep the pain to a minimum, decrease the swelling in the leg and make it softer, and they said I should start to develop a new venous system in that leg -- just like a tree, new branches (veins) will develop.
I've been on a Heparin drip and plan to go home tomorrow and switch over to Coumadin pills and blood thinning injections for about a week, and then drop to just the pills. Then I will have my blood drawn weekly, because I have to stay on this medication for 6 months and it's important to take only enough to make your blood thin, but not too thin that you will hemorrage.
Prior to the drip, I had a bit of a scare. To treat the blood clot with Heparin, they put a pic line in, which is an IV that goes directly to your heart. This made it easier because the nurse didn't have to stick me every 6 hours for blood. Prior to use, you need a chest x-ray to confirm placement. Once it was done, I couldn't figure out why so many hours passed, and then a doctor showed up and he said they confirmed placement of the pic line but also noticed a nodule the size of a marble, and he spent the last hour on the phone with my doctor going through my records for past nodes. They came up with nothing and thought it was a metastasis from my kidney, and ordered a CT scan. I said my prayers and I had no sleep that night, but at 10:00 a.m. the next morning they came in and said it was just a fractured rib. I think I did a happy dance in my bed!
I hope that these drugs to thin my blood don't have a negative effect on my eye and cause further bleeding. Steve has notified both my eye doctor as well as Dr. Jagar (the VHL specialist from the Univ. of Chicago). On Dec. 10, I go to meet with three other physicians from the VHL clinical center and hope they have some insight for me regarding all the problems I've been having lately.
I finally met with a legally blind facilitator for the State of Illinois Rehab Dept., who helps people like her get whatever they can from the State. She is planning to come out on Dec. 5 to start training with a basic cane and software for the computer, and she also will see if she can find some gadgets that are useful for people with low vision (e.g. color-coded sock connectors so they can be washed and stored together). Regarding getting help, she was going to put in for 20 hours per week of budgeted time for me for a personal assistant to help me in the home, check my emails, do minimal house stuff, grocery shopping, doctor appointments, etc. but we're still waiting to see if I qualify for that. Everything takes so long. It'll be 12 weeks on Dec. 7 since my eye started bleeding.
It has been wonderful that everyone has made extra efforts to see me in the hospital this month. It makes the day go faster. Alyssa and Tyler are of course stressed but seem to be getting used to it, as it hasn't let up now for months. I basically keep Alyssa busy, and that keeps her mind on happier things. Tyler is still doing very well neurologically and his doctor released him to play soccer as long as he no longer does headers, so he is once again a happy child. Steve's job is still going well and he is doing some traveling.
I hope everyone had a nice Thanksgiving. We spent it with my cousin Debbie and all my relatives. Every year everyone around the table says what they are thankful for. There were 18 of us so it took 2.5 hours this year. Also, a few months ago I'd seen a healing priest, Father Rookey, and Alyssa and I decided it would be special to say the prayer at Thanksgiving, so she led the prayer and we all passed his anointed oil around to bless each other.
As life brings us many more challenges and obstacles to overcome, we learn not to sweat the small stuff and be thankful for the big and little miracles in life.
In addition to being thankful for my family, I can't begin to thank all of my friends and their acquaintances for all their thoughts and prayers and everything. My friends and family are like my support group and they continue to give me the strength to go on.
Hope to see you all over the holidays. There are 24 shopping days left before Christmas...Ho Ho Ho!
