Choosing the right primary doctor during your transplant journey is a big deal. Contrary to what you might think, much of your day-to-day care will be handled by your primary physician (PCP). This doctor must be able to work in tandem with your specialist and especially with your transplant team.
Your PCP will be managing your care in several different areas. Again, I am speaking from my own experience, so much of this will be liver-related but there are overlaps regardless of the organ you need transplanted.
What Your PCP Will Manage
The PCP will oftentimes do blood draws for you and from them may adjust your diuretics, and prescribe vitamins for any deficiencies (common with diuretics). Additionally, your PCP will handle all of the usual pieces of your healthcare from blood pressure and pain management to an ankle sprain or head cold.
They can also help to manage referrals for routine maintenance (wow, suddenly it sounds like I’m talking about cars) such as EGD’s, CT scans, ultrasounds, and more.
So how do you find a decent one anyway? And what if you already have one? Are they going to provide you what you need?
Five Tips to Finding the Right Primary Doctor
The first step is to start with your insurance coverage to determine who is in your network. From there, you’ll want to narrow it down. Here are five things to look for when choosing your PCP.
- Is this a doctor who will defer to the specialists when it comes to transplant/organ-related issues?
- Are they going to update your transplant team with information and contact them if something is off?
- Will this doctor work in a co-op with you as a patient and hear what you are saying?
- Is this the type of doctor who will expand their knowledge to be sure they are up-to-date with as much information as possible regarding your specific case?
- Do you feel as though you have a rapport with this doctor and can be open with them about everything?
A PCP Who Will Defer to the Specialists
Let’s dive into these a bit more specifically. First, is this a doctor who will defer to the specialists? I have heard from patients who see their PCP or doctor in the hospital regarding an issue they are having that is transplant-related. One of two things has happened in these cases. They either receive contradictory information or worse, the doctor refuses to defer to or even call their transplant team. Yikes! I’ve seen the latter nearly cost someone their life!
Waiting for a transplant requires a delicate game of tightrope. You need to be sick enough to receive a transplant, but not too sick that it would be harmful to receive the surgery. Transplant teams are (obviously) the most experienced in this field. Your PCP, or any doctor you see, needs to be able to put their ego aside and allow the specialists to take over. With that said, if you have a PCP who will not follow or even speak to your transplant team, you should seriously consider finding a new doctor.
The Right Primary Doctor Will Communicate With Your Transplant Team
Second, they need to communicate with your transplant team. This takes the first point one step further. Your PCP must update your transplant team with blood work or test results. And not just when things are hunky-dory either (not that things are usually hunky-dory much in the transplant waiting game, but you get my point).
I can think of a time that my PCP had some blood drawn for me. He saw that my white blood cells were high and, knowing about a paracentesis I’d had recently, contacted me immediately. I received a phone call from him telling me I should head to the emergency room for treatment of what was likely SBP. He alerted my transplant team, I grabbed my go-bag and went in. His quick response, referral, and notification got the ball rolling on something that, untreated, can be deadly.
This Is a Co-Op
Third, your PCP needs to be in a co-op with you and your caregiver. Doctors are the experts, no doubt. However, only you can know what you are feeling. Your doctor must listen to what you are saying and work together with you on a solution. For instance, say your doctor has said that you need to have more fluid intake because your blood potassium is high. But, your team has you on fluid restrictions so you explain this to them. The goal here is for your doctor to hear what you are saying and see if adjustments to your diuretics or a renal diet might be the better option.
The Right Primary Doctor Who Will Dive In
Number four, is your PCP going to seek out up-to-date information regarding your specific disease and transplant in general? While we want our PCP to refer us to specialists when it comes to more specific things, it’s even better when they will expand their knowledge a bit to be sure they are in the know as well. This will allow for better care all around.
Trust is Key
Finally, is this a doctor you trust (or one you can build rapport with rapidly)? There are a lot of things that will come up during your transplant journey that are less than pleasant to discuss. If you can’t (and don’t) speak openly and honestly about everything going on, you will tie your doctor’s hands with providing you the best possible care. Some things may seem unrelated but be a signal to your doctor that something is going on. This is the time to be forthcoming. It will only help you.
You Deserve the Best
Finding the right primary care doctor will not only help you before your transplant, it will be just as important after as well. My PCP is the best. I mean it. He has a fantastic team and he knows my case inside and out.
After my transplant, I went frequently to see him at first. Blood pressure is a challenge for me and we worked together to get a combination of meds that keep my levels in a range that is optimum for transplant recipients. He knew this specifically from a medical journal he read about the primary care of a solid organ transplant recipient. This is what I mean by staying up-to-date with transplant-related medicine.
He knows that because I am a transplant recipient certain things just need to be watched more carefully. He still receives a copy of every blood test I get and will call me if anything is out of the ordinary to be sure I’ve spoken with my transplant team.
At the end of the day, finding the right primary care doctor will differ from person to person. With these tips, you are well on your way. Don’t be afraid to ask questions to get the information you need to make a good decision. Your PCP is invaluable in the success of your journey, both before and after transplant.
