When navigating the transplant process, caregiver education and note-taking are critical.  Patients may not always be in a place to handle their own care or advocation.  That means caregivers are often responsible for picking up where a patient left off.

Learning Everything You Never Wanted to Know

As people responsible for the care of a transplant patient, caregivers have a lot on their plate.  Actual physical care is, of course, a large part of what they handle.  Beyond that though is the need to learn more about the medical side of things too.  So what does that mean, exactly?

For example, I am a liver recipient so my mom (my primary caregiver) was responsible for learning all things liver.  

• What does the liver do? 
• What are some of the symptoms of liver disease?
• When these symptoms occur, what are the treatments for them?
• Could liver disease harm other organs (for instance, the kidneys)?

Ok, so that’s the organ-related side of things.  What else?  Well, another thing you’ll need to be familiar with is the blood work drawn for the patient.

• What are the primary tests that will be taken?
• Are there specific tests we should watch over others?
• What levels are alarming and warrant a phone call?

I mention the last point because sometimes you may see the blood test results before your specialist or transplant center sees them.  Unfortunately, when an outside facility draws your blood and faxes the results to your transplant team, there’s about a 50/50 shot of the test getting where it needs to go.

Caregiver Education Needs to Be Reliable

I’m not saying you need to dive deep into the medical field of knowledge.  However, I am suggesting that the more you can learn from reliable sources, the more effectively you’ll be able to advocate for your patient.

“Wait, how do I know what is a reliable source?” you ask?  The first recommendation I can give you is to ask your transplant team.  Many have materials, website references, and even blogs you can read.  But let’s say you have Googled something and now you have a long list of sites from your search.  Information coming from any of these are going to be pretty dang reliable:

• NCBI
• Mayo Clinic (or any hospital, really)
• UNOS
• Transplant Living (a UNOS site)
• CDC

Now, even though these sites are reputable, they are not the end-all-be-all when it comes to what you should do (and some of them require a medical dictionary to even understand).  Which brings me to my next point, note-taking.

Caregiver Note-Taking is Important

Let’s go back to your Google search.  After gathering information on Transplant Living and Mayo Clinic you feel like you know what’s what.  Don’t stop there!  Write down some notes for your patient’s doctor or nurse.  I’ll use a simple example here.  “I read on Mayo Clinic’s website that lukewarm showers or baths and calamine lotion can help with my loved one’s itchiness.  Am I correct about that and are there other things we could try?”

By asking questions in this way you are doing several things.  First, you’re showing you are capable of looking into a reputable site on your own.  Second, it demonstrates you will confirm with your patient’s team before going all willy-nilly (very technical term there) with treatment.  Finally, it shows that you are in the know with what is going on with your patient.  All of this establishes your credibility with your loved one’s team.  And credibility is what gives you a stronger voice when you are advocating.

Note-taking is important in other ways too.  Treatment can change very frequently before a transplant.  These changes can take place from day to day or even hour to hour.  Taking notes just helps to make sure nothing slips through the cracks.

It can also be invaluable when you are in the hospital with your patient and things get hectic.  There was a time when I was admitted into the hospital and they were expanding and moving their emergency department and opening up a new wing.

The Usefulness of Caregiver Education and Note-Taking

I had spent an overnight in the old ED and then I moved to the inpatient wing.  The next day, the new wing opened and I moved to that new wing.  Through all of this, I was already experiencing some HE symptoms and some of my medication administration had slipped through the cracks.

My mom (sorry if this is a bit inaccurate mom, my recollection is a tad sketchy) could see the signs of my HE kicking in.  She knew that meds had been delayed because of the move and that I was rapidly going downhill.  By this time, I had gone through three rooms and three personnel changes.

At this point, the probability of me moving to an ICU room looked inevitable.  However, she had been taking notes and had educated herself pretty extensively along the way (my mom’s a good student).  This allowed her to speak intelligently and for the doctors and nurses to take her seriously.  Her advocation for me on that day kept me out of the ICU.  After a very long (and very unpleasant) night, I was coming around again.

Using Your Caregiver Powers for Good

There is something to keep in mind regarding conversations with doctors and nurses.  It can be challenging to step out of a protective role as a caregiver.  This is someone you care about very much, so it is easy to get defensive and maybe even a little aggressive.  You must work hard to not do that.  

This “in-your-face” attitude will seldom help your case.  Knowledge about what you understand, specifics about recurring situations, and notes you have kept along the way will be far more effective when speaking with your patient’s care teams.

I’m not saying that emotions should not be present, nor am I saying that “in-your-face” isn’t sometimes necessary.  There are times when you simply must ask for a different doctor or a different nurse.  This is more common if you are dealing with someone who is not a transplant or organ specialist but that is the exception, not the rule.  And please remember to do this respectfully and professionally (more about that in a future post).

Learn It Quick!

As I’ve said, things can change frequently and rapidly while waiting for a transplant.  This means that your learning curve will be fast.  It is incredibly useful that patients and caregivers educate one another with the things they learn along the way and confirm that information with the professionals.

Between symptom management, dietary and fluid restrictions, hospital and doctor visits, and all of the other idiosyncrasies of caring for a patient waiting for a transplant, there’s a lot to manage.  But by educating yourself and keeping a repository of that information along with notes you take, you will be able to help advocate for your loved one effectively to get them to the transplant finish line.