Well, I did walk into the tall grass, and I've gotten mauled a bit. But it wasn't the paper tigers turning back to real ones, or not the way I thought they would, anyway. It was me, waiting for myself in the bush.
In this corner… Johnny (“Graft”) Slatin… and in this corner, Johnny (“Host”) Slatin… Hard to tell Self from Other in this post-transplant era.
I’ve been diagnosed with Graft vs. Host Disease of the liver, and put on a heavy dose of steroids (Medrol). I’ve also been put back on ProGraf (Tacrolimus, the anti-rejection drug I was first given a few days before the transplant and which I continued to take till the end of January to suppress my new immune system and keep it from taking power too quickly), a bunch of anti-drugs (antibacterials, antivirals, antifungals) to make up for the re-resuppressed immune system, and a low dose of Lexipro, an antidepressant to ward off some of the evil spirits/mood swings that can be a side-effect of the Medrol (I once had a very nasty depressive bout when I tried to take a Medrol dose-pack to reduce inflammation in my back; fortunately Anna’s dad, a surgeon, was on hand to give me peremptory instructions to stop the Medrol; end of that problem, but it made me leery even though I got through another dose-pack last summer to counteract the radiation recall reaction that flared up so badly while I was at Seton last June and early July).
We went to see Dr. Tucker last Friday for what we thought would turn out to be routine blood work. In fact, the CBC results were just about “perfect” and we were getting ready to go home when the nurse, Micci, called (we were still in the waiting room) to say she was coming out to talk to me. She didn’t sound happy, and she wasn’t. My liver enzymes were way up—significantly elevated. That could mean a lot of things—graft vs. host, liver cancer, who knew. She was distressed, I was scared and distressed, and Dr. Tucker was on the phone arranging for me to get to M.D. Anderson on Tuesday to see a Dr. Jones, who was filling in for Dr. Andersson, my regular transplant doctor, who would be away for another couple of weeks. Dr. Jones thought I should come in quickly, but would get through the weekend OK; Tuesday should be fine.
So, freaked out and depressed and with a sense of personal failure, I called Rotary House to make a reservation. No room at the inn, I was told, but then the man on the line recognized my voice or my patient number or something and his tone brightened and he was sure something would open up over the weekend; he would put us on the waiting list. And on Tuesday morning, at a little after 5:00 AM, we got into the car and drove off into what would not be sunrise for a couple of hours yet. Just as I was trying to learn to enter the focused state of calm contemplation without having to be sick first!
We got to M.D. Anderson about 8:15 and went straight to the ACB (now officially called the Mays Clinic, I think) to prep for a CT scan of the abdomen, my first test of the day. That involved drinking three full Styrofoam cups of Barium and waiting about 30 minutes, then being ushered in to the sliding table that would take me into the scanner. An IV was inserted in the crook of my left elbow (I had already been through this on Friday at SWRCC and Austin Radiological); I was instructed to raise both arms above my head, and then iodine contrast dye was injected through the IV. Made me feel very hot all over, from the inside, which was very strange and might have become intolerable if it had lasted long; but it only took a few seconds, during which a recorded British voice told me when to hold my breath and when to let it go. And that was that. I changed out of the scrubs they had had me wear for the procedure, and we went to the next thing.
The goal this time was to reschedule a 30-minute “pre-interview” in advance of a liver biopsy that was scheduled for Thursday, and which for some reason has to happen the day following the interview. We wanted to have the biopsy on Wednesday so we could go home that day and so that Anna, at least, could go to the BodyChoir retreat that we had been planning for so long to attend. So we went up to the Bone Marrow Transplant Clinic, enlisted the help of one of the schedulers, and lo! And behold, by the time we got back to the ACB for the interview not only had it been rescheduled but the biopsy itself had been moved to Wednesday morning at 7:30! Shows you what can happen when Anna-Tinkerbelle the Warrior-Fairy is working for you.
After the interview (which wasn’t at all informative) we went somewhere else (I’ve lost it) so I could have an ultrasound of the liver. It was very thorough, and parts of it were repeated—first the tech did the whole thing, and then two doctors came in, one supervising the other; at one point I was fascinated to note that there were native speakers of four or five different languages crowded into that room. Dr. Gomez directed Dr. Wurmers where to point the probe and asked him to describe to her what he was seeing. Then she said to me that everything looked pretty good—no sign of lesions that might have meant cancer, but there were some gallstones (nothing to do about them unless they caused trouble, which they’re not), and there’s a “teeny” benign cyst that’s also no cause for concern—apparently millions of people have thousands of these things. So OK.
It was something like 1:30 by now. We were running a straight line through a whirlwind! We went and sat in the ACB lobby, near the cafeteria, where we could hear the lobby “waterwall” and feel the sunlight streaming in through the wall-height windows. And then, to our absolute amazement, my cell phone rang and it was Dr. Jones’ nurse, asking how soon we could get there! A first in the history of medicine!
Dr. Jones is a big man, or at least his presence fills the room. He has a strong confident voice, he knew exactly what he wanted to do, yet was also extremely personable and helpful and proactive. He explained that he was pretty certain that I was experiencing graft vs. host disease of the liver, as well as showing symptoms in my mouth (severe dry mouth, painful lesions), some rash on my face, scalp, chest, and back (Dr. Tucker had been pretty sure of this too, and had sent me to the dermatologist upstairs on Friday for a skin biopsy which turned out to be positive for GVHD). Unless the liver biopsy showed something else going on, he would start me on steroids tomorrow (Wednesday), and ProGraf, and all the other stuff I mentioned at the beginning of the post; he wanted me to see Dr. Baile, the psychiatrist, to make sure the LexiPro would be the right course of action, but otherwise he was ready to go; he called Dr. Baile and did a little friendly armtwisting to get him to see me that very afternoon. Whew!
Wednesday morning we showed up at the ACB for the liver biopsy. It’s a long, complex procedure. There’s about an hour and a half of prep—VerSed (for “conscious sedation”), sterilizing the area, administering local anesthetic. Then, in a “trans-jugular liver biopsy,” which is what I was having because it’s ostensibly safer than the more traditional percutaneal one where they go in “blind” directly through the stomach, a needle is inserted into the jugular vein; a catheter is somehow guided around the needle. That needle is then withdrawn and replaced by something else, but I think I’m starting to get the details wrong here… At any rate another needle is somehow inserted down the length of the catheter and into the liver, where some kind of clip at the end bites off a bit of liver, comes up, and then goes back for more until the pathologist says there’s enough for a meaningful diagnostic sample. Then they remove everything (well, all their equipment) and you stay there for another three hours while they monitor you in case of internal bleeding. Seeing none, they gave us our walking papers; we went up to see Dr. Jones one last time (I was amazed at how much room he made for us in his schedule), collected a couple more prescriptions at the pharmacy, and were on our way.
I felt fine after we got home Wednesday night, and fine on Thursday morning. But about noontime on Thursday I wasn’t feeling so well, and I had a hard time staying focused when JayByrd came over to visit later in the afternoon. By 5: or so it really hurt, so we packed up again and went to the Emergency Room at Seton. They did yet another CT scan, and once again saw nothing—no signs of internal bleeding, no signs of infection. They sent us home and told me to take pain meds orally when I got there. By 9:30 the pain was even worse, and we went back. I think two ER visits in one evening is a record for us. This time they admitted me so they could keep an eye on things. They started with oral Delauded but that didn’t seem to do anything so they switched me over to an IV, which helped some, and kept me there till Sunday morning, by which time the pain had gone down enough so that I felt I could go home without Anna’s having to be in a state of constant panic and watchfulness (during my time in hospital she had been able to take Dillon out to the retreat while I rested; I think that was good for all three of us).
So now it’s Wednesday afternoon. As of Monday morning my liver enzymes were down, a hopeful sign that I've already begun responding to the Medrol. The pain has diminished some more, too, though I spent the entire first half of the day sleeping. I’ve cut back on the Delauded because I just couldn’t stand the grogginess, and hopefully that won’t come back to bite me later in the afternoon or evening.
We go back to M.D. Anderson on Friday for a follow-up visit with Dr. Jones. I hope he’ll be able to tell me I can start tapering off on the Medrol (he said that would be possible when the enzymes showed a clear downward trend), but I’m not counting on it. I hope.
Sorry it’s been so long since I reported in. To cut to the emotional crux of all this, I feel punchy, like I’ve been slapped one too many times; there’s that sense of personal failure that I mentioned earlier, which I know I “shouldn’t” feel but do; and there’s a sense of anger that hasn’t been there before, or hasn’t been this open. I don’t want to stay there, but I think I’d better sit with these feelings for a while and see what emerges.
Thanks, and love to all.
John (and of course Anna and Dillon)
P.S.The worst of the accessibility problems on the Blogger log-in screen seem to have been fixed! I was able to get to the username field and the password field using the tab key, and logging in was no trouble. Thanks to everyone who's been working on this!
Labels: accessibility, Graft vs. host