Return and Report

Here is my report from Houston.
Things went pretty well. I didn't oversleep, and managed to get to the doctor's office by 10:00 AM. I didn't think I was too nervous until I was driving in and got to the outskirts of Houston. Then my heart started beating faster and I started feeling butterflies. It wasn't so much nerves about my evaluation, as it was just heading into Houston. I think after this whole thing is over (in another 4 years), I'll *still* have a physiological reaction just being in Houston at all!
By the time I was at Dr. Hutton's office and the nurse was getting my vitals, my heart rate was 105 bpm and my blood pressure was 124/75 (which is really, really high for me. I'm usually like 100/65 or less).
At least I had the walking test right off the bat. Thank you, Dr. Hutton, for not leaving me in agony for longer than necessary.
The walking test is down a long, L-shaped hallway just outside his office. Dr. Hutton's got it measured out so he knows the distance from his office to various points along the hallway. One complete circuit to the end of the hallway and back to his office is about 100 meters. Last time I made it to the double glass doors at the end of the hallway, and partway back that length of the "L," before I had to stop. He gave me 80 meters, which I think was a bit generous.
I had tested myself at home the day before and walked about 120 meters (10 lengths between the far wall in the living room to the far wall of the laundry room), so I was feeling pretty confident.
But then, halfway down the first side of the "L," my legs started trembling. Not a good sign. I caught my toe on the floor and nearly fell. I got really discouraged, thinking I wasn't even going to make it one length of the "L."
But all of those years running cross country in high school, and later pushing myself to knock *another* 10 seconds off my running route came back to me and I decided I was going to make it to the double doors at the end of the hall. And I did! And then I decided I was going to make it to the point where I gave up last time. And I did! And from there, I told myself, "Just to the next doorway." "Just to the other side of the doorway." "Just to the corner." "Just to the water fountain."
The nurse was very nice, encouraging me along the way and giving me helpful advice like, "I think the key is smaller steps." (Although strangely it's not, the momentum of my leg swing can carry my leg farther and with less effort than more frequent, smaller steps. It's the initiation of the step that takes so much effort.) Toward the end, I was telling myself, "Just 3 more steps. Just three more steps. Just three more steps." And on that last one, I made it 2 more steps before my legs buckled and I was well and truly done.
I'm not sure what my exact distance was. I think a little more than 100 meters. I did make it the entire circuit back to the doctor's office. I know I did better at home the day before, but I think part of the problem was that I overdid it at home and my leg muscles were fatigued.
I am pretty confident I'll be able to at least go the same distance (and hopefully with a little less effort) next month. And I am really motivated to work on some strengthening exercises between now and then so it's not so hard.
It's hard to explain how it can be so hard to walk a measly 100 meters. My only analogy is that it feels like walking with 50 pound weights strapped to each foot. It's *really hard.* And my balance is really crummy, so each movement forward threatens to knock me off balance. I have dreams about walking. Just walking, unassisted, with leisurely, easy steps across a room. Oh, to be able to do that again.
The rest of my testing was fine. Reflex tests, sensation tests (what does it feel like when I poke you with a sharp stick here? How about here? Any difference here? Fun stuff), eye exam, dexterity tests (putting little pegs in these little holes and then out again), a timed 25-foot walk (but I can use my crutches, so not a big deal), and the mental memory math test, my favorite.
It turns out I had to come and repeat the EDSS testing because at my 6-month evaluation I showed a decline from my baseline EDSS about 3 weeks before the transplant. The doctor was supposed to retest me within a certain amount of time to make sure the measurement was valid, but he forgot, so now was scrambling to get it in before my 1-year evaluation in July. :-)
Anyway, he scored me at a 5, which was better than last time, so I'm pretty happy. I think I probably could have scored higher last time, because I didn't push myself as hard on the walking test as I did this time, but in any case, I haven't declined since January.
I also found out I am still the only patient that has gone through the transplant at M.D. Anderson. The Washington state center has had 9 patients finish the transplant, but all the other candidates here are caught up on insurance approval. So I feel very fortunate and extremely indebted to Texas Mutual (Ben's employer) for funding this.
On a little more depressing note, I'm also the only patient that has shown any decline from baseline. All the others have either stayed constant or improved. Some as much as 2.5 EDSS points, which is HUGE (the scale only goes from 1-10, 1 being normal, 10 being dead. I'm at a 5, so I guess I'm halfway to dead. Nice, huh?). But I really don't think I've declined since coming back from the transplant. I just don't think I ever bounced quite back up to baseline. And, believe me, I am so grateful just to have not had any decline. I will take that, thank you very much. Yes, I'd dearly love to improve, but just stopping this awful disease for a while is prize enough for me.
At the end of the exam, the nurse gave me Mexican food from some catered event there at the hospital (it was really good), and then I was on my way back home. I left about 12:45 and I thought this time I'll be able to get out of Houston without running into traffic. Not so. The traffic started on the ramp between 59 S and 610 N It took me 1 1/2 hours just to get to the Sam Houston Tollway. Should have taken about 15 minutes. Ah well. I did finally get out of town and picked up my boys at 5:00 PM and made it back home in time to collapse on my bed and pretty much not move again until the next morning. :-)
And I'm so excited to get to do the whole thing over again in another month. :-)