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.

1 comment:

Christy said...

Cris, I realized today that I hadn't read an update on you lately, so I went looking and found this.

I wasn't expecting the depression to hit me either. It was about 9 months post-tx for me, and it hit with a bang. Of course the meds helped, and I was able to go off of them about 6 months later. I've been on and off them quite a few times over the years since tx, but the low you are feeling now will certainly pass.

I'm assuming you've had your sinus surgery now. I hope you are recovering and that it helps tremendously with your infections. I know you aren't looking forward to the Nissen, but once you get past the initial crap, for lack of better words, it's amazing to not have to deal with heartburn anymore.

I'm so happy for you and April. I hope things continue to her better and better for you guys! It sounds like a great relationship.

Here's to getting back to NY as soon as possible and back to life without doctors in your face everyday! Congrats on the 5 minute run!! That's awesome!