Another theme I’ve noticed in the Facebook groups is prospective donors turn to living donors who have been through the process to compare notes and commiserate on their experience during the evaluation process. The time starting when you first came forward to tested through the day of the actual surgery can be long and incredibly stressful.
Anecdotally, and based on my personal experience, the stress comes from the waiting, the uncertainty, the worry of letting someone down, and the fear of running out of time. The stakes are high and the tests are thorough. We learn so much about our own anatomy, but don’t always know what to make of each new piece of information we are given.
I asked a few questions about the evaluation process and the stress experienced by prospective living donors. I wish I had asked even more on this topic and hope that breaking it out a bit might be helpful to recipients, prospective donors, medical teams, and really anyone supporting a living donor as they go through the evaluation process.
How much stress/anxiety did you experience while navigating the donor evaluation process?
Overall, amongst the 260 respondents who answered the question, only 17.7% responded rated their stress during the evaluation the equivalent of a 4 or 5 out of 5.
This question fascinates me, though, because when I started filtering by other questions to find statistically significant differences in donor experiences, there were a bunch.
One of the first, and probably obvious, differences that jumped out at me was that donors who come forward hoping to benefit a family member were more likely to rate their stress at the highest end of the spectrum than those who come forward without a specific recipient in mind. On the flip side, those with no one particular in mind were more likely to report no stress at all.
I said that feels obvious because altruistic donors would not have to witness their recipient’s health decline first hand and might not experience the internal pressures about letting a family member down.
I asked what donors thought the most likely outcome would have been had they not come forward. Not surprisingly, those who believe the recipient would have passed away were more likely to report a lot of stress and anxiety during the evaluation than those who thought another living donor would have come along.
One of the things that can make the process really stressful for a prospective donor is that often insurance companies will only pay for one person to be evaluated at a time. If you believe your recipient is likely to pass away if you don’t move forward and there’s no one else on deck…that’s a really stressful situation that a policy change (e.g. evaluating as many prospective donors as possible) could probably ease.
Another significant factor in stress reported during the evaluation process seems to be gender. Men were more likely to respond that they only experienced a little stress, a 2 out of 5 on my scale, than women.
This could be a Mars and Venus type finding or could be influenced by some other factor. I did confirm that men and women were equally represented in groupings about relationship to the recipient and time since donation.
Aside from the transplant team, who did you consult with before you made your final decision?
When faced with a stressful situation, it can be really helpful to talk to others who have been through it, professionals who can help you understand the ask, and loved ones who truly have your best interests at heart.
I’m surprised that only 7% consulted with a licensed therapist and wish that donors had professional support to every step of the process. Most centers require only one checkpoint with a licensed mental health professional after you’ve passed the first round or two of tests.
Note that some of those answering this question wrote in that they were unclear on what it meant by “consult” in this case and may have read it as a request for permission or approval.
How supportive were the people closest to you about your decision?
The good news is that 93% of the 260 living donors who answered this question reported that the people closest to them were supportive or extremely supportive of their decision.