March 29, 2014

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.

March 20, 2014

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. 

March 18, 2014

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.

March 17, 2014

Miracles keep happening.

Post-transplant day 97, rehab #47.

I go to rehab or the hospital and am taken care of by people who have lived in this world for so long that the shock is no longer there - news of transplant or news of death has become a routine and brief moment of joy or upset for the cadre of caregivers we know as doctors, nurses, and therapists. It's an aspect of the job that can't be helped. Rarely can they afford to make the kind of personal connections we patients make among ourselves.

But being here so long has similarly numbed me (a little) to the reality that continues to unfold around me. Day in and day out I associate with people whose lives are on the line, or who recently faced their own life-and-death trial. It is BIZARRE that news of a friend getting transplanted should have become routine. It is HATEFUL that news of friends or friends-of-friends passing from complications of transplant or from cystic fibrosis has also become routine.

But I forgot, though, that today's a holiday and first-order friends of mine tend to get transplanted on holidays. Today began with news from Andrea Hughes Maechtle that she'd gotten a third call! And I've been hanging on FB all day to see if she'd post an update, or not - which would have its own meaning. I knocked around rehab and found out that TWO people got called this morning, but don't know who the second person is. I spoke on the phone to Dr Hartwig's secretary, concerning a scheduling matter, and she said she'd have to confirm with him later, that he was currently in surgery and there was a second patient waiting for surgery, too. It was not too great a stretch to assume that one of my two friends was currently getting her lungs!

Now I just saw on Andrea's wall that "It's a go!" which means that she is just now being wheeled into her own surgery. I am THRILLED for Andrea! She waited more than nine months on the list here, as she was a hard to match case. I wish her all the best luck and hope she'll bring the same determination and stick-to-it-iveness to recovery that she brought to rehab.

But I'm left wondering who the other person was who got called and, it seems, was transplanted earlier today? Looking around and taking stock of who was missing from rehab, which was quite a lot of people, there are several possibilities, but dare I hope it was Heather James?? It would be so poetic: her birthday is tomorrow.  [Edit: it was not Heather James.  And later that night, Ellie Levy got her call and was transplanted the next morning on Heather's birthday!]

Today I am reminded of what it really feels like to be overwhelmed by the enormity of the moment. That although miracles happen every day here at Duke, they are nevertheless miracles. Each and every transplant is a stunning occurrence involving a confluence of skills, planning, preparation, and sheer luck that amounts to winning the lottery. I thank the Duke transplant team for saving our lives; and I deeply, lovingly thank the two anonymous donors who selflessly gave their organs so that life can continue in at least two more people today.

March 12, 2014

Recovery, phase two

Post-tx day 92, pulmonary rehab #44

As of today, I've now spent as many sessions in rehab post-transplant as I did pre. It was on December 10th that I did my 44th session and got the call for new lungs. December 10th, my life changed, in some ways unpredictably so.

One of the things I could not have predicted is the "stickiness" of the post-transplant weakness, the debilitation. Some of that I surely earned, after a year of not running, months of not bicycling, barely keeping up with a New Yorker's level of walking and stair-climbing (and beginning to find ways around that too!) Some of the debilitation isn't earned, but is thrust upon me by the act of transplant itself. I can't describe well enough to those who haven't been through this just what this surgery does to you; how quickly you are robbed of your strength in every limb and wracked with pain in every joint, not just the limbs and joints operated upon.

These first three months have seen me make an amazing comeback, by anyone's standards. My lung function is getting close to normal, I am stronger in rehab than I was before transplant, and today I was able to sustain 6 mph on the treadmill for two full minutes (and then repeats of somewhat shorter duration). This is all good news on the comeback trail.

But I still don't feel like myself.

I was talking to Piper Beatty about this today and it dawned on me that my friends who have been through transplant all seemed to really start to blossom AFTER the three-month mark. No matter how hard or easy their transplant journey, they seemed to start to recover THEMSELVES only after 90 days had passed. Not to say there haven't been complications and setbacks, but it was only in this later period do I start seeing posts from Emily Gorsky about getting out shopping for the fun of it, taking dance lessons, and spending a whole lot of time with a boy. It's only in this post-90-days period that I started seeing posts from Jerry Cahill about running real distance and pictures where he looked his former self. And considering he rode a 40-miler with me just 8 months after his transplant, I think I'm safe in assuming the best is yet to come.

Recovery will happen as it happens. And I'm lucky to be able to even say that. While I struggle, I struggle ALIVE and that's more than can be said for some of my compatriots. Yesterday we lost two more CFers, one of them here at Duke waiting for lungs. I don't know what happened, but it must have been sudden. Massive hemoptysis, perhaps. I grieve for Colleen and pour my anger that somehow we let her down into my efforts at rehab, no matter how strong I do or don't feel.

My hospitalization last week and the current antibiotics have left me feeling weakened again and hollow. But today I was reminded that this too shall pass - this too MUST pass - and I'll soon be riding and jogging the streets of New York again, as strong as ever. But I have to give this process the time it is due.

March 4, 2014

Saying goodbye to a friend

12 weeks post-transplant today; pulmonary rehab #42.

At 84 days post, I've reached many new milestones in my recovery, including being able to pick up the pace on the treadmill to a full 6 mph for 4 repeats of 60-75 seconds. Weights and resistance bands are increasing, reps going up. Etc.

But my happiness over this progress is right now thrown into stunning negative by another kind of progression, the one Steve Bell recently wrote about. Downward progression is claiming a friend.

One of my transplant group, Jeannette Keefer, #1398, is not going to make it. As I write this, she lays in ICU dying. Everything that can be done has been and the decision was made over the weekend to discontinue life-saving measures and let nature take its course. At 73, she had the disadvantage of age, but she was a spirited fighter. She is much like a grandmother to me, and all of us in our transplant group - the last dozen transplants or so of 2013 - love her very much. She and I started rehab about the same time, got listed within a couple weeks of each other, and she was transplanted just four days before me. She's been in ICU for 88 days, battling one complication after another. And now, perhaps mercifully, it is coming to an end.

I'm distressed for her husband Jim, her children and grandchildren. I'm distressed for our transplant group. Losing someone like this is not common. And it's hard to look at someone still breathing yet knowing her life is slipping away and there's nothing to be done about it. But I took her hand and I told her how proud I am of her, for being brave enough to reach for life and for fighting the good fight. She did a good job.

Tonight, I am reminded that it is a horrible fucking thing to have to say your final goodbyes. But I am also reminded how wonderful it is to get the chance to say them, before it is too late.