Most transplant patients understand why lab work and clinic visits are important before we get our transplant.  But what about after that?  These visits can make a massive difference immediately following your transplant as well as one, five, or even 30 years down the road.

Before Transplant

All through transplant it’s hammered into your head:

“You absolutely, positively must make all your appointments.”  Did anyone else hear a FedEx commercial just then?  No?  Just me?

“You must do your lab work weekly (as you near the top of the list) or you won’t be active on the transplant list that week.”

“Get your procedures done and done on time.”

Right after transplant, this is still front and center.  We have appointments in transplant clinic (including bloodwork) twice a week. Then once a week, and eventually once a month. By that time, we are all in an appointment-keeping, lab-going groove.

But then things seem to normalize, blood work evens out and it’s smooth sailing from there, right?  Well, not exactly.

Why Lab Work and Clinic Visits Are Important Initially

Within the first three years of my transplant, I had not one, but two rejection episodes!  The first time around, it was about six months post-transplant.  I remember feeling just a bit, “off.”  We all get to be in tune with what’s going on with our bodies through the transplant process.  I couldn’t really explain exactly what was off, I just knew something wasn’t right.

I went in for my regular lab work and then made an appointment to speak with a transplant nurse that same morning.  When we met about an hour later, sure enough, I had elevated liver numbers.

I went through some testing, adjusted my medications, and I had three days of outpatient IV steroids.  I’ll be writing an entire article about rejection in the future so I’ll keep it simple here.

About three years later, I was cruising right along and feeling “normal.”  I went in for my regular monthly lab work and I had elevated liver numbers.  Once again, I went through testing, med changes, and outpatient IV steroids.  And once again, my lab numbers returned to normal.

Early on, it takes some time for everything to normalize with your medications and to get through some adjustments.  For transplant patients who are parents, I say the first year of a transplant is like the first year with a newborn.  Things are uncertain, they get sick out of nowhere, and after a year or so everything normalizes.

That doesn’t mean that all you have to do is make it through the first year and you’re home free, though.

Why Lab Work and Clinic Visits Are Important Going Forward

Lab Work

So here I am, more than seven years post-transplant and I still get my labs drawn every two months.  In early October this year, I had a mild spike in my numbers and I went back to get more labs drawn two weeks later.  Always trying to be a good patient, I went back two weeks later.  My lab results came back and while my liver numbers had come back down, my tacrolimus levels were high.

Transplant nurses contacted me to confirm that I had my lab work done during a true trough.  They consulted with my doctor and instructed me to cut my tacrolimus dose in half twice a day.  I will be going back in to get lab work done again next week.

So, it’s not only the tests specific to the organ you had donated.  They are also watching the levels of immunosuppressants in your system.  Too much, and you are more prone to every infection out there.  Too little and you’re facing rejection.

Clinic Visits

Aside from the ongoing lab work, clinic visits are also important.  Each transplant center will have their own way of doing things.  Mine likes to see post-transplant patients at least once a year once released from their surgical team.  Obviously, they want to keep tabs on how you are doing with your transplant, but there are other things they may be keeping track of as well.

For instance, as transplant recipients, we are to avoid the sun and use sunscreen when that is not possible.  If we are following the directions of our team, this can result in a vitamin D deficiency.  Your transplant doctor will also be monitoring many other things like:

• Kidney function
• Electrolyte levels
• Hepatitis screening
• Cholesterol levels
• Your health as a whole and quality of life

Pitfalls of No Lab Work or Clinic Visits

There are many reasons why lab work and clinic visits are important.  By not keeping up with them, you could be putting yourself in jeopardy in many areas:

• Undetected rejection (or detected late) resulting in graft failure or irreparable graft damage
• Abnormalities in other blood work (like vitamins, electrolytes)
• Excessive immunosuppression that could result in infections or even death
• High cholesterol (transplant patients are at a higher risk for this)

If that wasn’t enough to encourage you, missing lab work and clinic visits is considered non-compliance.

Suppose you repeatedly missed clinic visits or lab work and your transplant center labels you as non-compliant.  Some rejection occurs and it isn’t caught (because you haven’t been getting your blood drawn).  You experience irreparable damage, or worse, total graft failure.

In this example, you would be listed for another transplant.  But you have been non-compliant. So, your transplant center refuses you for a second transplant because you weren’t doing your part to take care of your first transplant.  Scary, right?!

All That Importance and It Can Still Be a Hassle

Let’s face it.  If you work, chances are you’ll have to take at least a little bit of time off to get your lab work done or go in for clinic visits.  And if you don’t work, it can still be a bit of a hassle.

I travel at least 18 miles each way to get my labs drawn (well, pre-COVID, there was one closer, but not right now).  But I’m also looking at moving within the next year.  After that, my commute for blood draws will be 45 minutes in any direction.

On top of that, depending on which location I go to, I could wait for anywhere between 10 and 30 minutes.

Early on, you are so accustomed to frequent doctor visits and blood draws, once a week or once a month is a piece of cake.  As each year passes and you go through without incident, it starts to seem a bit unnecessary.  I mean, you feel fine, you take your meds like clockwork every single day.  You follow the rules, you see your PCP, you do all the right things, so why do you have to keep going through this?

Why Lab Work and Clinic Visits Will Always Be Important

Even 25 years down the road, you could experience rejection.  Or high immunosuppressant levels.  Or have spiking kidney numbers (some immunosuppressants can be hard on your kidneys).  You are more prone to infections.

Remember, even though you feel great and are doing everything right, things can still go wrong. And you might not even notice it.

In the event something does go wrong, you should be able to catch it early.  As with most things, the sooner we catch something, the sooner we can do whatever we need to do to deal with it.

What if that “something” is your transplanted organ failing?  You have been maintaining your lab work and clinic visits, so your team is on top of it and you have been compliant.  So, if that means that you will need to be re-transplanted, you’ve done your part.  You’ve shown that you are a good candidate when it comes to post-transplant care.

How About That Silver Lining?

As with most things we face in life that are negative (or even just mildly annoying), there is usually a positive side.  As transplant recipients, our silver lining is always that we are alive to experience these things.  Life is full of ups and downs, but we have the good fortune of having a second chance to take all that on.

Even when things can seem trivial, remember that it’s all part of a big picture.  And we paint that picture with all the life we get to experience by managing all our post-transplant care like lab work and clinic visits.  The better we do with that, the better our big picture will be.