Once again, I will begin by apologizing for not updating our blog! Unlike the past, we have a good excuse for not updating the blog. In the Spring, I was offered a faculty position teaching grads/undergrads pursuing careers in Speech-Language Pathology. After a great deal of prayer, we decided to move! Over the past several months, we have sold our home, bought a home, found a new school for Mark Thomas, and all of the other things that come with relocating. While we are enjoying our new home and I love my new job, Harlan will always be "home" and we miss our family and friends!
With respect to the status of Mark's transplant, my Mom was selected as the candidate for being a donor. While my Mom does not "match" Mark, she can donate in a paired exchange. In other words, Mom will donate to a stranger so that the stranger's donor will give to Mark. Last month, Mom and I traveled to Hopkins to complete the donor evaluation process. We learned last week that she was cleared to donate. Thus, at this point, Mom and Mark's names have been entered into a database. Hopkins will begin looking for matches. When they have identified a potential match, Mark and Mom will begin sending tissue samples to Hopkins. Once matching has occurred for the paired exchange, the transplants will be scheduled. However, there is really no way of predicting how long it will take to identify a match. We could remain in the database for 2 months, 2 years, or 2 days! Please continue to pray for our family! To be honest, we are trying NOT to think about the transplant and trying to just give it to God. Not knowing when the transplant will happen is difficult to say the least. We find comfort in the fact that God is in control of every detail of the situation! Thanks for your continued prayers!
Saturday, November 5, 2011
Sunday, March 27, 2011
Report from Hematologist at Hopkins
Mark's appointment at Hopkins with the Hematologist was Thursday of last week. We learned that Mark does not have antiphospholipid syndrome, a blood clotting disorder in which Mark has family history and that has been associated with unsuccessful transplants. The Hematologist felt that Mark's blood did not look abnormal and felt like he did not have a hypercoagulability problem despite the issues that he has had with clotting over the past two years (i.e. clotting of first transplanted kidney, clots in his heart in January of 2010, and a non functioning dialysis fistula). He did see a few minor things with Mark's blood that he felt
warranted a few additional tests, but nothing he found he felt would be directly linked to the failed kidney transplants. As we had mentioned in earlier posts, the Transplant Team at Hopkins has been successful at transplanting patients with a history of failed transplants and antiphospholipid syndrome. In fact, one of their current research projects is investigating the use of a new medication in transplant patients with antiphospholipid syndrome. So, we were actually hoping that Mark would have this blood clotting disorder as it would serve as a reason why the transplants have failed. Needless to say, we were a bit disappointed on Thursday.
While we were at Hopkins, blood samples from Mark and me were collected to investigate whether or not there is the presence of anti endothelial antibody when our blood is combined. The Team will also analyze Mark's blood when combined with Justin's blood (Justin has sent his blood to Hopkins earlier this year). If the presence of this antibody is detected when Mark's blood is combined with the blood of his donors, it is evidence that the transplants failed due to humoral rejection or antibody mediated rejection. This would actually be a good thing as this would explain why the transplants failed. It too is an issue in which Hopkins is researching as has had success with transplanting patients using their "highly sensitized protocol". Hopefully, we should find out the results of the testing within the next two weeks. As always, thanks to all of you who have prayed on our behalf. We ask for continued prayer as we will learn soon whether or not a third transplant will be a possibility.On a positive note, Mark Thomas and Mark's mother, Rhonda, accompanied us to Baltimore. We spent some time in DC and had a blast! Mark Thomas was so excited about riding the Metro. He actually became quite skilled at traveling via Metro...he would insert his card and walk through the Metro gates alone. He reminded us often, "I can do it all by myself because I am a big boy." He also liked the Air and Space Museum and Natural History Museum of the Smithsonian. He especially enjoyed the planetarium and dinosaur exhibit.
Tuesday, February 15, 2011
Appointment with Hematologist Scheduled
After a week of phone tag, our appointment with the Hematologist at Hopkins was confirmed for March 24th. Originally, we were scheduled for May 11th (the day my sister is scheduled for her c-section). So, we are thrilled to secure an earlier appointment. The appointment with the Hematologist will determine if Mark has anti-phospholipid syndrome-one of the blood clotting disorders Hopkins can treat prior to transplantation. On a related note, a few weeks ago, Justin (Mark's second donor) and I sent a sample of our blood to Hopkins to determine the presence or absence of antiendothelial antibody. This is the other blood clotting issue that can be treated prior to transplantation. Unfortunately, the lab at Hopkins could not complete the analysis of my blood as the sample was not large enough. Thus, we will have to send our blood again sometime soon.
So it looks like we will continue to pray and wait for now. We are prayerful that God will lead and direct our family and the physicians at Hopkins as we will find out relatively soon if a third transplant will be a part of God's perfect plan for our family. As always, thanks for the prayers and support.
So it looks like we will continue to pray and wait for now. We are prayerful that God will lead and direct our family and the physicians at Hopkins as we will find out relatively soon if a third transplant will be a part of God's perfect plan for our family. As always, thanks for the prayers and support.
Sunday, January 9, 2011
Update from Initial Visit at Hopkins
Mark and I returned from Baltimore on Thursday. Our initial visit with the Transplant Team at Hopkins was successful on all counts. However, whether or not Mark will receive a third transplant is undecided at present as additional testing is needed. As we had hoped, we met Dr. Montgomery, the Surgeon who is doing research on sensitized patients who have had unsuccessful transplants. The entire Team (Surgeon, Nephrologist, Nurse Coordinator, Social Worker, Dietitian) at Hopkins seemed well informed of Mark's case and very knowledgeable of how to make a third transplant successful. In addition, the Team was compassionate and very patient...we had formulated about 25 or 30 questions and received an answer for all of them between the visits with each Team member. Here is a brief summary of what we learned:
From the review of Mark's medical records, the Team believed that the first transplant failed due to necrosis (i.e. death to tissue due to inadequate blood supply). As you will remember, Mark's body seemed to immediately clot off my kidney when it was placed in his body. The lack of blood supply caused my kidney to die which caused it to be removed from Mark's body a few days following the first transplant. The question that needs to be answered before a third transplant will take place is "What caused the clotting?". Over the past two years, Mark has had three major blood clotting issues....his body clotted in response to the first transplant, his body clotted off the fistula the surgeons at UK attempted to create in his forearm for dialysis last January, and his body clotted in response to the dialysis catheter that was tunneled near his heart which resulted in the large "mass" or vegetation that remained in his heart for 6 months last year. A recurrent theme in our discussions at UK has been the presence of a blood clotting issue. Just before the second transplant, Mark saw a Hematologist at UK who checked him for several blood clotting disorders. At that time, he tested negative for one specific blood clotting disorder-antiphospholipid syndrome-a disorder in which he has family history and that has been linked to negative outcomes in transplantation. However, results from the testing at UK have been mixed as analysis of the kidney from the first transplant indicated that a blood clotting disorder may have caused the lack of blood supply to the kidney. In addition, we learned from Hopkins that some of the treatments Mark received around the time of the second transplant could have impacted the results of the blood testing. Because results have been mixed and the significance of a blood clotting disorder is great, the next step at Hopkins will be to see their Hematologist. The Nurse Coordinator is scheduling this appointment for Mark in the near future.
The Team at Hopkins seemed to think that the second transplant was unsuccessful due to humoral rejection or antibody mediated rejection although the testing and analysis completed at UK was inconclusive. As we've mentioned in prior posts, Mark's immune system is very sensitive. He has developed antibodies against most people's tissue. In addition, his immune system has memory to the foreign tissue placed in his body from prior transplants (Justin's kidney and my kidney). This makes him considered "sensitized" and serves as the reason why it may be difficult to find a donor. However, much to our surprise, the Team at Hopkins expressed that they thought Mark would have a "reasonably good chance" of finding a match in a paired donation or "kidney swap". Mark would take part in the sensitized protocol at Hopkins that involves use of plasmapheresis (a procedure much like dialysis in the sense that it pumps out all of the blood in the body, but rather than cleansing it, it removes the plasma or watery part of the blood that carries the antibodies) and IVIG (Intravenous Immunoglobulin-a treatment to replace the protein removed from pheresis) several weeks before and after a third transplant.
After Mark sees the Hematologist at Hopkins and after the the blood that was drawn last Wednesday is analyzed, the Team will determine if we will proceed with a third transplant. If Mark has a blood clotting disorder that they know how to treat, he is likely to be transplanted again. More specifically, if Mark has antiphospholipid syndrome-the disorder in which he has family history, or anti endothelial antibody (something I know very little about), he is likely to receive a third transplant as Hopkins has successfully transplanted sensitized patients with these issues in the past using their experimental protocol. However, if Mark has a different blood clotting disorder, it is unknown whether a third transplant will be attempted. Hopkins transplanted at least two other sensitized patients who exhibited other blood clotting issues unsuccessfully in the past. So, as funny as it sounds, I am hopeful that the testing will show that Mark exhibits another health problem...either antiphospholipid syndrome or anti endothelial antibody!
On a positive note, as you will see below, Mark and I enjoyed our time in DC! We visited the Holocaust museum, the Natural History Museum at the Smithsonian, Arlington, and went on a narrated tour of the monuments! We missed Mark Thomas terribly, but were glad he avoided the bitter cold wind in Washington! In the picture below, Mark is pointing to his name sake...Marcus R. Davis...a Vietnam Vet from Evarts who was good friends with his father.
From the review of Mark's medical records, the Team believed that the first transplant failed due to necrosis (i.e. death to tissue due to inadequate blood supply). As you will remember, Mark's body seemed to immediately clot off my kidney when it was placed in his body. The lack of blood supply caused my kidney to die which caused it to be removed from Mark's body a few days following the first transplant. The question that needs to be answered before a third transplant will take place is "What caused the clotting?". Over the past two years, Mark has had three major blood clotting issues....his body clotted in response to the first transplant, his body clotted off the fistula the surgeons at UK attempted to create in his forearm for dialysis last January, and his body clotted in response to the dialysis catheter that was tunneled near his heart which resulted in the large "mass" or vegetation that remained in his heart for 6 months last year. A recurrent theme in our discussions at UK has been the presence of a blood clotting issue. Just before the second transplant, Mark saw a Hematologist at UK who checked him for several blood clotting disorders. At that time, he tested negative for one specific blood clotting disorder-antiphospholipid syndrome-a disorder in which he has family history and that has been linked to negative outcomes in transplantation. However, results from the testing at UK have been mixed as analysis of the kidney from the first transplant indicated that a blood clotting disorder may have caused the lack of blood supply to the kidney. In addition, we learned from Hopkins that some of the treatments Mark received around the time of the second transplant could have impacted the results of the blood testing. Because results have been mixed and the significance of a blood clotting disorder is great, the next step at Hopkins will be to see their Hematologist. The Nurse Coordinator is scheduling this appointment for Mark in the near future.
The Team at Hopkins seemed to think that the second transplant was unsuccessful due to humoral rejection or antibody mediated rejection although the testing and analysis completed at UK was inconclusive. As we've mentioned in prior posts, Mark's immune system is very sensitive. He has developed antibodies against most people's tissue. In addition, his immune system has memory to the foreign tissue placed in his body from prior transplants (Justin's kidney and my kidney). This makes him considered "sensitized" and serves as the reason why it may be difficult to find a donor. However, much to our surprise, the Team at Hopkins expressed that they thought Mark would have a "reasonably good chance" of finding a match in a paired donation or "kidney swap". Mark would take part in the sensitized protocol at Hopkins that involves use of plasmapheresis (a procedure much like dialysis in the sense that it pumps out all of the blood in the body, but rather than cleansing it, it removes the plasma or watery part of the blood that carries the antibodies) and IVIG (Intravenous Immunoglobulin-a treatment to replace the protein removed from pheresis) several weeks before and after a third transplant.
After Mark sees the Hematologist at Hopkins and after the the blood that was drawn last Wednesday is analyzed, the Team will determine if we will proceed with a third transplant. If Mark has a blood clotting disorder that they know how to treat, he is likely to be transplanted again. More specifically, if Mark has antiphospholipid syndrome-the disorder in which he has family history, or anti endothelial antibody (something I know very little about), he is likely to receive a third transplant as Hopkins has successfully transplanted sensitized patients with these issues in the past using their experimental protocol. However, if Mark has a different blood clotting disorder, it is unknown whether a third transplant will be attempted. Hopkins transplanted at least two other sensitized patients who exhibited other blood clotting issues unsuccessfully in the past. So, as funny as it sounds, I am hopeful that the testing will show that Mark exhibits another health problem...either antiphospholipid syndrome or anti endothelial antibody!
On a positive note, as you will see below, Mark and I enjoyed our time in DC! We visited the Holocaust museum, the Natural History Museum at the Smithsonian, Arlington, and went on a narrated tour of the monuments! We missed Mark Thomas terribly, but were glad he avoided the bitter cold wind in Washington! In the picture below, Mark is pointing to his name sake...Marcus R. Davis...a Vietnam Vet from Evarts who was good friends with his father.
Saturday, January 1, 2011
Initial visit at Johns Hopkins....1/5/2011
I hope everyone has enjoyed a blessed holiday season. The Christmas season seems to be such a magical time of year...especially in the eyes of a 3 year old boy. Our family enjoyed a wonderful holiday season. Highlights of our holidays included watching Mark Thomas as a wise man and our nephew, Landon, as Baby Jesus in our church play, seeing Mark Thomas' excitement opening his gifts (especially his new cowboy boots and Thomas the train toys), and a beautiful "white Christmas" as southeastern Kentucky received about 6.5 inches of beautiful snow!
As many of you know, the husband of one of my mother's college friends, Mr. Powell, expressed interest in donating his kidney to Mark. Over the past several weeks, we have been anxiously awaiting the results of the tissue typing test Hopkins completed with Mark and Mr. Powell. We were hopeful that Mr. Powell would be a potential donor as he has type O blood. However, we recently learned that Mr. Powell was not deemed a potential donor. While Mark and I have been trying to prepare ourselves for this news, it is hard not to feel a great deal of disappointment. I keep trying to tell myself to focus on how amazing it is that someone we don't know well was willing to help Mark. Despite the outcome of the testing, Mr. Powell's selflessness and willingness to help truly was a remarkable holiday gift.
Tomorrow morning Mark and I are leaving for DC and Baltimore. Mark is scheduled to meet with the Transplant Team at Hopkins on Wednesday. Because none of Mark's potential donors have matched, we will proceed with the paired transplant program. All of Mark's potential donors (his mother, my mother, his cousin Jamacia, and Mr. Powell) have wanted to participate in the paired transplant program in an effort to help Mark. In the paired transplant program, one of Mark's donors would donate his or her kidney to a stranger and the stranger's donor would donate a kidney to Mark. At present, Mark must complete several different types of testing in order to be deemed healthy enough to receive another transplant. In addition, his donor will complete testing in order to be deemed healthy enough to give a kidney. After the testing is complete, Mark will then be entered into a database in hopes that a match can be found. It remains uncertain if a match for Mark will be found in the paired transplant program. He may wait for a short period of time, may wait for several years, or a match may not be found at all. In the past, Hopkins maintained their own database of patients interested in a paired donation. However, it is our understanding that as of the end of last year, UNOS (Universal Network of Organ Sharing) has consolidated databases to allow for paired donations across the nation with multiple transplant facilities. (see link at http://www.unos.org/about/index.php?topic=newsroom&article_id=2646:45dc3b2bc18bc5bbc85a467639b37d22). While we are eager to go to Hopkins and have Mark deemed eligible for participation in a paired donation, we are trying to remain cautiously optimistic realizing that a third transplant may or may not happen. Ultimately, we are attempting not rely on ourselves (or an impressive transplant facility), but to place our trust in God and his perfect plan for our lives. This, of course, is a constant struggle. Please pray that we will travel safely, that the trip will be productive, and that we will enjoy DC (Mark has never been to Washington)! Most importantly, please pray that we will have the correct frame of mind and spirit as we continue on this journey!
As many of you know, the husband of one of my mother's college friends, Mr. Powell, expressed interest in donating his kidney to Mark. Over the past several weeks, we have been anxiously awaiting the results of the tissue typing test Hopkins completed with Mark and Mr. Powell. We were hopeful that Mr. Powell would be a potential donor as he has type O blood. However, we recently learned that Mr. Powell was not deemed a potential donor. While Mark and I have been trying to prepare ourselves for this news, it is hard not to feel a great deal of disappointment. I keep trying to tell myself to focus on how amazing it is that someone we don't know well was willing to help Mark. Despite the outcome of the testing, Mr. Powell's selflessness and willingness to help truly was a remarkable holiday gift.
Tomorrow morning Mark and I are leaving for DC and Baltimore. Mark is scheduled to meet with the Transplant Team at Hopkins on Wednesday. Because none of Mark's potential donors have matched, we will proceed with the paired transplant program. All of Mark's potential donors (his mother, my mother, his cousin Jamacia, and Mr. Powell) have wanted to participate in the paired transplant program in an effort to help Mark. In the paired transplant program, one of Mark's donors would donate his or her kidney to a stranger and the stranger's donor would donate a kidney to Mark. At present, Mark must complete several different types of testing in order to be deemed healthy enough to receive another transplant. In addition, his donor will complete testing in order to be deemed healthy enough to give a kidney. After the testing is complete, Mark will then be entered into a database in hopes that a match can be found. It remains uncertain if a match for Mark will be found in the paired transplant program. He may wait for a short period of time, may wait for several years, or a match may not be found at all. In the past, Hopkins maintained their own database of patients interested in a paired donation. However, it is our understanding that as of the end of last year, UNOS (Universal Network of Organ Sharing) has consolidated databases to allow for paired donations across the nation with multiple transplant facilities. (see link at http://www.unos.org/about/index.php?topic=newsroom&article_id=2646:45dc3b2bc18bc5bbc85a467639b37d22). While we are eager to go to Hopkins and have Mark deemed eligible for participation in a paired donation, we are trying to remain cautiously optimistic realizing that a third transplant may or may not happen. Ultimately, we are attempting not rely on ourselves (or an impressive transplant facility), but to place our trust in God and his perfect plan for our lives. This, of course, is a constant struggle. Please pray that we will travel safely, that the trip will be productive, and that we will enjoy DC (Mark has never been to Washington)! Most importantly, please pray that we will have the correct frame of mind and spirit as we continue on this journey!
Saturday, November 6, 2010
Just hold on....Just let go
I've spent a great deal of time over the past few weeks thinking and reflecting about our journey over the past two years. In a way, the time seems to have passed so quickly. It is hard to believe that two years ago today-on 11/6/2008-Mark and I visited UK for his initial visit with the Transplant Team. But, in other ways, it seems like our life has been turned upside down for so long. It is hard to remember exactly what life was like when our thoughts were not consumed with worries, our house wasn't cluttered with dialysis supplies and medical equipment, when the most common greeting received wasn't "How is Mark feeling?", and when the most frequent conversation didn't center around transplantation. Our sense of normalcy has drastically changed. The life we now live is so different from what we would have imagined. At times, it is difficult not to become angry and bitter with the situation. Over the past two years, there have been several times when Mark and I have asked "why?", "why us?", "why now?" As silly as it sounds now, I really was not expecting to learn a few weeks ago that none of Mark's three potential kidney donors were matches and that it may be difficult to find a match for a third transplant. I guess I felt like we had suffered enough and had waited long enough for something to happen in our favor. For two years now, I've been living with this "JUST HOLD ON" mentality. "JUST HOLD ON...if you can find a living donor and Mark can get transplanted before he is on dialysis, it will all be OK." "JUST HOLD ON....even though the first transplant wasn't successful, if you can find a second living donor, Mark can be transplanted again and it will all work out." "JUST HOLD ON...even though the first two transplants didn't go as we had planned, if we can get you referred and accepted by Hopkins, it will eventually work out." I have realized that in the midst of my "JUST HOLD ON" mentality, I've never truly "JUST LET GO" of the situation and fully given it to God. I've been so consumed with the "next step" and concentrating on what I could do to make it all go away....from praying and praying that I would be the donor...to preparing and planning for the first transplant... to reading everything I could to better understand Mark's health... to making sure that all appointments were scheduled and all tests were complete... to analyzing insurance options... to planning short term housing for our family in Baltimore if Mark was transplanted at Hopkins. Just recently, I've come to terms with the fact that there isn't a "next step"...that a third transplant may not be a part of God's plan for our lives. I've also realized that always focusing on the "next step" and constantly looking to what lies ahead often leads to not completely trusting God and truly relying on Him in the present. In many ways, Mark and I have been waiting for something positive to happen to restore his health for so long that our waiting started to interfere with our living. I have realized that I do not want anything to put my faith on hold. I've got to "JUST LET GO" and start completely trusting God today...not waiting to trust Him when something positive happens, but relying on Him now and trusting that He will guide us and protect us even if a transplant is not a part of His plan for our lives.
Monday, October 18, 2010
Praying for a miracle....news from Hopkins received
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.
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.
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