Lots of news on Day 72, though!
Off the Foscarnet
Top of the list is no Foscarnet today! That's the med that's been bringing me in every day and sometimes twice a day for three or four weeks. It also wipes out my electrolytes, resulting in one to two hours of magnesium infusions almost every day. The CMV level, which is the virus the Foscarnet was treating, was under 200 yesterday, which is considered completely negative. (Apparently, it's impossible to completely eradicate.)
The big news there is that hopefully means I won't be coming into the clinic every day. By now (day 72), they like to have transplant patients coming in 2 or 3 times per week. They've tried with me several times, but something has always come up. I have an antibiotic to receive by IV tomorrow, but it's possible that I won't have to come into the clinic at all this weekend ... Lord willing.
Let's see. Jerry, my leukemia buddy, who originally came in the hospital two days before me back in July, got sent home for four weeks! He was thrilled.
Jerry made it over 90 days after transplant without any time in the hospital. Even his transplant was outpatient. Then he got a terrible lung problem that they determined last week was a blood clot. They're treating it with blood thinners, which must be working if they're letting him stay in Grundy, VA, some seven hours from Vanderbilt for four weeks.
I mentioned to a couple of the nurses that know both him and me that he'd had the blood clot in his lung, and their eyes widened noticeably. I could tell that one of them wanted to ask, "Is he still alive?"
We had Jerry over for dinner the other night, and we talked about those things. The doctor said that had that clot hit the stents in his heart rather than the vein in his lung, he would have had a massive heart attack, and there would have been no recovering.
Every day we find reason to give thanks to God for answers to prayer. Last week when Jerry drove 7 hours to come to an appointment, he got here and none of the discounted rooms for cancer patients were available. He ended up at a hotel for over $100. We prayed that there would be something this week, and they got a room that is normally never available during the week, only on weekends.
Floaties and Flashes of Light
A few days ago I got up in the morning, and I noticed that I had a number of "floaties," those things that a lot of us can see in our eye on and off throughout our lives.
These floaties were solid, though, not stringy or cloudy, and there were about ten of them, all in my right eye. When I moved my eyes from right to left or left to right, it looked like a bunch of little bugs were running across the floor at my feet.
The next day, there were more, and the ones from the day before and dissolved a little so that they were no longer so solid. Also, overnight I'd been seeing flashes of light in the peripheral vision of my right eye.
I told the nurse about it on Friday, six days ago, and they said they'd try to get me an appointment with an ophthalmologist. She said all transplant patients see the eye doctor sooner or later, but it sounded like my visit needed to be sooner.
On Saturday, I got up and could see a plume of blood in the peripheral vision of my right eye. It was much bigger than any of the floaties. Over the day, it detached, and it became a big floatie, covering about a third of the total vision area of my right eye. It was not opaque, but it was not very clear, either. It moved around, and when it blocked the vision of my right eye—which was pretty often because this was a huge floatie—it made things very shadowy.
I was also still seeing the flashes of light in my peripheral vision at night, maybe a dozen times a night.
When I told the doctor on Monday, he said he'd try to get me an appointment with the eye doctor this week. It appears to me, however, that when he reached the ophthalmologist, the eye doctor told him I needed an emergency visit, not an appointment. They ended up rushing me from Photopheresis, which ended about 3:30 pm to see the ophthalmologist before 4.
To make a long story short, they knew exactly what it was and exactly what they were looking for. We have a gel in our eyes called the "vitreous humor." It fills the space between our retina and the lens of our eyes. As we get older, it hardens, and it can pull away from the retina. In fact, it happens to everyone if they live long enough, usually between the ages of 50 and 80.
So there was nothing abnormal about what was happening to me. It was pure chance, they said, that the separation of my vitreous happened during the transplant process.
On the other hand, the separation can tear the retina or cause it to separate, and that is why they wanted to see me immediately. They looked down in my eyeball in a dark room, pulling my eyelid out of the way with a tool that looked like a crochet needle. It was somewhat torturous. Between the bright light shining in my eye, and the crochet needle pulling my eyelid around, I couldn't decide what was painful and what was just blinding. At one point, the doctor told me to look up, but my eye was so traumatized I could barely think straight, much less look anywhere. I started laughing, and it took a couple seconds to stop. I apologized, and he went back to staring in my eye.
The end of all that, though, was that my retina is not torn or separated. Everything's just fine, but the process isn't over. He said I'll be seeing the light flashes for a while, which happen as the Vitreous continues to pull away from the retina.
They'll check my retina again in a month just to make sure everything's okay, and then that will be the end of that.
I went back to the cardiac doctor yesterday. They looked at my last few EKG's, which the stem cell clinic orders regularly for various reasons, and he decided that everything's fine with my heart. They want one last echocardiogram, and if it shows my heart is strong, then there will be no follow-up. I'll just be done with cardiac visits.
Very nice. The echo is tomorrow afternoon.
Richard and Nicola in South Africa
I've asked for prayer before for Richard in South Africa. He is on day 15 of his transplant, and they're sending him home from the hospital. The note I got said that he's had very little side effects so far, and his counts are already coming up. This is really good, as he got a very strong conditioning regimen that even included radiation.
Like every other person in their situation, they have to guard against infection and graft-vs-host disease. They're one more answer to prayer. Please keep praying for them.
It's really encouraging to see them doing so well!