It does get better.

Post transplant day 109; pulmonary rehab #55.

Well, I'm almost 15 weeks out and I guess it's time for an update.  Things have changed recently and it seems like a new phase of recovery really has begun.

For one thing, last week I experienced my first couple of days since long before transplant that I just felt good, physically. Sure, it took a little caffeine, but I finally feel GOOD. My pain level has generally dropped to zero, aside from some infrequent twinges along the incision.  I've DC'd the oxy and tramadol and use tylenol only for the occasional aches and pains that come at my age.

Mentally, I don't feel as good.  For the first time in my life, I have depression.  It isn't that I'm not counting my blessings, believe me, but that isn't enough sometimes; and I'm fortunate that I know enough about depression to recognize the signs of it.  I asked my coordinator for some help and I'm on a low dose of an antidepressant.  It has helped.  I'm not swinging from the trees, but I'm functional again.  This is very common post-transplant, but I'm still surprised to be dealing with it.

Speaking of meds, many of the ones I was on right after transplant have been DC'd, though I'm on a slew of new ones.  I'm currently at 36 pills per day, not counting the enzymes, which adds another 10-15.  I have 22 meds and supplements active and another dozen in reserve in case they're activated.  The regimen is constantly changing as my needs change.  Oddly enough, part of my roster includes two different anti-epileptics, one meant to control a long-standing muscle spasm problem that got worse after transplant and was part of of why I couldn't sleep and the other to possibly control the prograf shakes.  It's only been a couple of days, so we'll have to see how things go.  I'm also on two blood pressure meds.  Just can't seem to get those numbers to come down.  Again, these problems are very common after transplant.  I haven't been able to surprise my doctor with anything new.




I'm physically getting stronger, lifting almost as much as I was pre-transplant and definitely able to walk farther, faster.  In fact, Friday I was finally able to get in a run interval on the treadmill of a full five minutes!  I followed that up with three more intervals totaling another five minutes, meaning half of my workout was jogging.  I think I can go further next week - at least Monday and Tuesday before my sinus surgery.

And that's what's next:  a sinus surgery that will leave me in a lot of pain for a while, but hopefully will clean out the likely source of my chest infection.  This is a common surgery for CFers, both pre- and post-transplant.  But this is my first and I'm somewhat nervous.  Of course, my stomach surgery two weeks later will mess me up even worse.  The Nissen fundoplication is not for my stomach's sake, actually, but to protect my lungs from my stomach.  I'll have a hard time eating enough to keep up my weight for about a month, plus there will be servere weight restricts on how much I can lift, which will make moving strategically challenging.  Fortunately, I'm moving only one piece of furniture and the bike, which I can put in the van before surgery.  I may need some help unpacking when I get to New York.  The rest of my effects, I'll pack in many small boxes to keep each one under ten pounds.

Finally, my romantic life is looking good, for the first time in a long time.  I'd forgotten how nice it can be.  April is a fine girl and we keep finding things in common and points of mutual interest. 

So that's where I am.  Mentally ready to return to New York, but held hostage here by Duke until we wrap up these secondary, but necessary, surgeries.  Physically, I'm enjoying what feels like a huge step forward, though it is still tiny compared to where I was two or three years ago. Socially, blessed with a girlfriend who understands me on levels nobody else in my life can.  Today I am reminded that it does get better.

Taking stock at 100 days.

Post-transplant day 100; rehab #50.  Taking stock.

I don't have any deep thoughts today.  I've just been ruminating over where I've been these last 100 days and how far I have yet to go.  It is an amazing coincidence that my email started filling up again with subway service alerts today.  I had turned these off exactly six months ago; shortly before moving to Durham.  I'd figured six months should be more than enough. 

Well, it was enough to get listed and transplanted and even recover to - what? about 85% functional status.  But it hasn't been long enough to get me OUT OF DURHAM.  And that is the sore point in all of this.  There were a lot of things that could have been done differently and I could have been gone by now, or at least been packing up this next week.  (I acknowledge that getting sick right in the middle of a clinic visit is almost certainly going to set anybody's going-home timetable back.)  But I surely thought that by 100 days post-transplant, I'd be home again.

I'll admit this setback has affected me more than it probably should have.   I feel marginally better after a long conversation wtih Piper Beatty today, who once again saves my sanity by showing me that what I'm experiencing is well-trodden transplant territory.  These last 100 days - hell this whole last couple of years - has been made so much easier for having her counsel.  I can't imagine how people go through this alone and without the benefit of an experienced guide.

What I've accomplished in 100 days is reasonable.  Not everybody is able to jog, ride a bicycle, and do pull-ups and push-ups after 100 days.  Mostly, we still feel like hell, even if its a better hell than the first days and weeks right after our surgery.  What I HAVEN'T accomplished in 100 days weighs on my mind.  I still can't jog a continuous mile, haven't returned home, can't lift what I could pre-transplant.  Walking any distance still involves a new kind of effort (though once I get going, I can go quite a long time).  People will tell me I should be satisfied with my progress so far; but if satisfaction with myself were in my nature, I wouldn't have achieved what modest marks I have at this point.  I'm always pushing.  Now, I never thought I'd be at 100% by 100 days, but I guess I thought I'd be a little further along than I am. 

The past 100 days, though, has been primarily filled with pondering the source of my lungs - my donor and savior, that wonderful anonymous soul.  What must his family be going through?  Soon, at the 6-month mark, I will write a letter to my donor's family; a letter of thanks and of pride.  I hope to be able to tell them they can be proud of their loved one, for having passed on beautiful lungs and that they can be proud of the recipient, for having used this gift to its maximum potential.  I want to be able to write of  wonderful adventures, such as the upcoming 5 Boro Tour and the Long Reach Long Rider's annual ride.  I'll write of surviving a horrible disease and of recovering swiftly after transplant.  And I'll write of finding a girlfriend, returning home, returning to work, and trying to live a life for two.

What will the next 100 days bring?  I'll make plans, but I'll make no bets.  Life is too strange and unpredictable right now.  But I hope the next 100 is even better.  Today I am reminded that transplant patients don't set the timetable, that patience is a virtue, and that any 100 days now is 100 more days than I had on the clock. 

What can be.

Post-transplant day 98, rehab #48.

Though I had to drag myself to rehab today (insomnia and pain still affecting my sleep you know), it turned out to be a good day.  First of all, it felt good to be able to share the news of Andrea and Ellie's transplants among our rehab friends.  [The rehab staff already knew, as tends to happen on Tuesdays because the they send representatives to the weekly transplant team meeting where every patient's progress is reviewed.]

Secondly, I notched some small marks of progress.  On the treadmill, I was able to put in a jog interval of a full three minutes!  I followed that by more intervals, totaling eight minutes of jogging, 12 of walking.  My goal before sinus surgery is to get in a 5-minute jog interval and get the jog/walk ratio to 50:50 or better.  Anyway, believe me that after a year of no running and then a major surgery, three solid minutes at six miles an hour is a victory. 

I also decided to continue something I tried on my last "arms" day: pull-ups.  The first time I did this, nobody but Kyle noticed and that was probably a good thing.  This time, though I had the unsolicited attention of several patients and a couple of the therapists.  I managed five pullups and it was generally met with approval.  This will probably be the feat that gets my ass booted out of rehab and put over in CFL.  We'll see.

But I hope not because of what happened at the end of the day.

After 5:15, the place quickly becomes a ghost-town.  As I was packing up, there were only two or three of us patients left and all the therapists had disappeared into the office, leaving the exercise floor a towel-strewn desert baking under the noonday glare of 3200K fluorescents, with only ghosts occupying the floormats and the arms of the weight machines jutting up like steel saguaro.

As a chill breeze whistled through, carrying the lonesome notes of some downbeat iTunes radio station, I was stopped by the other patient who was still there packing up.  He is not eligible for a transplant, but is there trying to keep what's left of his lungs (after several cancer surgeries) strong.  He does a good job!  He confirmed with me that I'd already had transplant and then thanked me for still being here.  I said I'm surprised they haven't sent me over to CFL yet, but am more than happy to continue working out at the ideal gym.  He said he liked having me around because it's highly motivational to everybody else.  He said he noticed people work harder when I'm around.  He said he hopes I stick around at rehab until I leave for New York because I'm good for the general atmosphere; I set a mark to strive for; I show what CAN BE.

I really needed to hear that.  I constantly have my doubts about whether I should be exercising there.  I hope to be able to lead by example, but I have very little proof that my presence has any positive impact at all.  I'm afraid I'm seen as a showoff by some of the patients simply by performing at the level I do (which is honestly NOTHING compared to my real athlete friends!); and I don't want to fall into the trap of performing so well as to demoralize them.  But today I was reminded - unsolicited - that all I have to do is continue to do what I do, and that will be enough to inspire those who want to be inspired and motivate those who want to be motivated.  The therapists don't need to crack a whip, nor beg and plead, nor cajole, nor patronize - they just need to keep one or two patients like me around - patients who inspire just by coming out and doing the rehab with 100% effort and a smile on our face and showing what can be.