What is it like taking all those pills?

Answer:
 
 

What pills?  Oh, those pills.  It's a routine, like drinking coffee in the morning, taking a Snickers break in the afternoon, or having a hot chocolate at night.  Frankly, it's harder organizing your pill orders and making sure that you don't run out of one while watching another.  It happens.  You eventually realize that you must have a reliable and intelligent mail-order provider.  More on this below.

Except for a small number of mid-afternoon pills--small being a relative term, since it's probably more than the average person takes in a week--most of the pills go down (literally) in the morning and again at night.  Typical times for taking them are 9AM, 3PM, and 9PM, although I am now guilty of being looser with those times than I probably should.

For comparison's sake, here's what I used to take at the two and a half year post-transplant point:
 
 

Let's face it, it could be worse.  The hardest part is getting a source of supply that understands the needs of the transplantee, and I can tell you they aren't that common.  After ditching Merck-Medco (the worst), I used Stadtlanders Pharmacy in Pittsburgh for a time, but their billing system became so cumbersome that I decided I needed a new supplier.  After a long search and many discussions, I was given a lead by an HR person at Johns Hopkins--really just a telephone number from a brochure she had on her desk--but it resulted in my current relationship with Good Life Resources.  They have been a God-send, and are without a doubt the best mail-order pharmacy for transplant patients and their family members that I have ever found.  Call Jeff Klinger at 800-227-2221 and tell him I sent you.

And now, some 3 years later (five and a half years out), I am taking the following pills:
 
 

You can see that a few changes have been made--Axid is now Prilosec, Neoral is now Pro-Graf, Mycelex Troches have been discontinued, Docusate Sodium is gone, Metoprolol has been added, Prednisone is way down, Citracal has been added, and my times have all slipped by about two hours.  Oops.  All in all, I'm happy with these changes, and actually volunteered for a couple of them--others were suggested by my transplant pulmonologist.  And as things go, there will be more changes as time (hopefully) moves on.

There is also the unexpected issue of vacations, which represent a small challenge (if you take them--me, I feel like I'm on a permanent vacation).  You generally need a portable pill organizer, unless you want to bring all the bottles you have with you and risk loss or theft, which would impact you even when you return home.  You will also learn to adopt useful shortcuts like taking your afternoon doses with you in a portable key-ring vial such as is available at CVS.

And while I used to take my vital signs twice a day, I've grown lazy and are now not so diligent.  Once I decided that I needed to address my steadily increasing blood pressure and volunteered for medication for it, I tried and then abandoned Diltiazem due to headaches and swollen feet (which involved over half a dozen blood draws), went over to Metoprolol, established a suitable dose (more blood draws), and then basically just stopped worrying about it.  Call me crazy, but by that time I was sick of the whole thing.  As long as my creatinine level is within range, I'm happy.

And while I used to weigh myself when I woke up before I took my morning pills, that's now history too, but I was a good soldier for over 2 years--the best--and you should be, too.  I do still hit the spirometer for a couple of weeks prior to my quarterly PFT tests, but other than that only when the urge hits me.  Interestingly, however, while training for my last test, I discovered that the Beta Blockers had apparently caused my spirometry results to drop by about 10%.  I stopped taking them for about a week prior to the actual test and had correspondingly improved numbers, then resumed taking them afterwards.  Go figure--it's always a moving target: the pills, the side effects, and the adjustments you have to make.

For me, this sometimes difficult but frankly welcome routine only serves to reinforce the fact that I am here by the grace of others including God, in whatever form you believe he or she exists (or doesn't), plus the mysterious activity of microscopic genes and cells and the communication that occurs between them.  It also reminds me that the connection we have with life is both tenuous and tenacious, and that realization gives me strength.  Sure, the mechanics of post-transplant life can be a pain, but it sure beats the heck out of you-know-what.  Need I say more?

When you get right down to it, when you get to this point, it's hard to complain about the weather.