Chapter 8 - Paired Donations and National Registries: Should I Be Personally Involved?
My answer to you is a categorical yes. The rhetorical question back to you is, why would you not be involved? Here are the reasons you want to be involved:
At Best, a Registry Provides a Kidney; at Worst, It Provides a Back-Up Plan
First, even though you may believe you have already found your healthy donor, until you are actually transplanted you have no guarantee that your proposed donor will actually be your donor. What if your donor becomes ill? What if your donor’s circumstances change? What if they change their mind? As you are aware, things can change. The old adage “hope for the best and prepare for the worst” is certainly applicable here.
The Possibility of a Better Donor-Recipient Match
Second, it may be that an exchange program can provide you with a donor who is an even better histocompatibility match for you than your current prospective donor. If your prospective donor is willing to participate in such an exchange, consider paired donation as a potential mechanism for bettering your match. The data that supports the rationale for this particular use of paired donation is only now beginning to develop. However, the early data does trend in the direction of support for this approach. Consider all your options. A few percentage points of increased survival every time you improve your donor’s HLA matching with your own will result. How important are those few extra percentage points of survival to you? My bet is that they are important to you. Just remember that time is of the essence. Considering improving your match is fine only when it does not delay your transplant. If a delay in time to transplant is involved, discard the idea immediately.
The Larger the Pool of Prospective Donors, the Greater the Likelihood of a Match
Third, people who are going to be difficult to match are more likely to be matched if multiple prospective donors, rather than just a single or several individuals, are being considered. People who are going to be difficult to match include those with a prior transplant, those with prior blood transfusions, or those with high levels of circulating antibodies (otherwise known as high panel reactive antibodies – or PRA scores). Remember that even pregnancy, in view of the cross-circulation between mother’s blood and the placental circulation, can sometimes result in antibodies that render histocompatibility matching problematic.
Large Registries May Result in Shorter Waiting Times
Fourth, data accumulated to date by the National Kidney Registry shows a shorter waiting time for patients enrolled in their registry compared to those outside the registry, currently about six months in the registry and longer outside it. The take-home lesson is clearly this: investigate the various national registries. Ask the important questions: (a) How many transplants have you matched? (b) How many and which hospitals are you affiliated with? (c) How often does your registry’s computer do matching runs? Finally, (d) what are the one and three year results of those patients you have matched? Know well the transplant centers you are considering, and then make your decision. See the Additional Resources chapter at the end of this book for a partial listing of registries.
Paired Donation and National Registries: Should I Be Personally Involved? Take-Home Messages
- Kidney registries can provide a larger pool of potential donors than otherwise available to us on our own.
- Registries may be able to provide us with a better match than we currently have.
- Registries may be of particular value for those of us who are hard to match.
- Registries may enable an earlier match than otherwise possible.
- It is very important to know the characteristics of the various registries, their history, their number of successful matches, and which of them participate with the transplant center you are contemplating.
Chapter 7 - How Will I Ever Find A Donor?
Chapter 9 - What Does the Potential Living Donor Need to Know?
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