Several things have happened since our last blog post. After several emails, faxes, and phone calls, the confusion with the records at Hopkins seems to be resolved. In addition to requesting records from UK and Mark's Dialysis Nephrologist, the transplant team at Hopkins ordered two additional tests as a part of the evaluation process. Over the past several weeks, we have scheduled the tests, completed them, and sent the results to Hopkins.
On September 20th, Mark sent a blood sample to Hopkins for tissue typing. A few weeks ago, three potential living donors (Mark's mother-Rhonda, my mother-Tish, and Mark's cousin-Jamaica) sent their blood samples to Hopkins for crossmatching. Crossmatching is a test in which the donor's and recipient's blood is mixed to determine the presence or absence of an immune system response. A positive crossmatch would indicate the donor's body would likely trigger an immune response (i.e. rejection) to tissue from the potential recipient. Thus, a negative crossmatch is the favorable test result as it would indicate that Mark's body would not trigger an immune response. Thus, a negative crossmatch would result in a greater likelihood of Mark's body accepting a kidney from the potential donor. Because Mark has had two transplants, in addition to the makeup of his own immune system, Mark's body has "memory" of the foreign tissue that was placed in his body (i.e. my kidney, Justin's kidney). So, the team at Hopkins also checked for a "repeated mismatch". I am not absolutely clear on the details of this test. It is my understanding that a repeated mismatch would indicate that the potential donor's blood/tissue is similar in composition to the blood/tissue that was rejected in prior transplants. Thus, the presence of a repeated mismatch would not be favorable as it would indicate that Mark would likely reject a kidney from the potential donor.
We found out today that all three of Mark's potential donors had a positive crossmatch with repeated mismatch. Thus, the likelihood of Mark's body rejecting a kidney from Rhonda, my mom, and Jamaica is high which rules them out as a potential living donors. As you might imagine, we are pretty devastated by this news as a living donor is a requirement in participation in the incompatible kidney program at Hopkins.
At this point, we have 2 options for a third transplant. One option would be the identification of a potential living donor whose tissue typing did not result in a positive crossmatch or repeated mismatch. The nurse stated that blood type 0 would likely be the best match. Just this evening, we have had three additional family members volunteer to donate to Mark. However, it may be unlikely that a family member is chosen as a sibling of mine is likely to have similar blood/tissue typing as me and my kidney was rejected by Mark's body. The nurse told us not to rule any donor out until blood work confirms a positive crossmatch. The nurse also described Mark's immune system as "very complex" noting that he has the presence of several antibodies that trigger an immune reaction during transplantation. There are treatments to rid the body of antibodies prior to transplantation (plasmapheresis-Mark had this treatment after his second transplant). However, some antibodies are more aggressive than others and do not respond as positively to plasmapheresis. Mark happens to have an antibody (A2) that is an aggressive antibody not always treated by plasmapheresis. Rhonda, my mom, and Jamaica also have A2 which contributed to them not being selected as a donor. Approximately 50 to 60% of the general population has this antibody as well. Thus, finding a living donor who has a negative crossmatch will be difficult to say the least.
The other option would be to become involved in the paired kidney donation program at Hopkins. This program entails a living donor for Mark donating his/her kidney to a stranger, and the stranger's living donor donating a kidney to Mark. Just like the use of a living donor who is a friend or family member, this option could only happen if Hopkins can identify a donor who "matches" Mark. Given the fact that he has several antibodies in his immune system, this may be a difficult and long process.
As we learn more about the options described above, I will post more information. At this point, I guess we are pretty numb in that it is hard to process all of this. Emotions are difficult to manage in the midst of this situation. Please pray for our family and especially the three donors-Rhonda, Tish, and Jamaica. Our mothers seem to be struggling with the situation as I know it was both of their hearts' desires to sacrifice part of themselves to help Mark. Please pray for my sweet mother-in-law. I am sure it is difficult to hear that despite your wishes and willingness to help, you can't help your son. In a strange way, I am thankful that, despite the outcome of the first transplant, I at least had the opportunity to help Mark. I am in awe of Jamaica's willingness to help Mark and am sure she is struggling with emotions resulting from not being able to donate. I am trying to stay focused on the fact that these three amazing people were willing to make such a sacrifice for Mark. Regardless of the outcome of the testing, nothing can change take away from their remarkable selflessness.