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.

Extremely frustrated...still waiting for word from Hopkins....in for an even longer wait!!!

Well, after several months of thinking that Mark's case was being reviewed by the Transplant Team at Hopkins and that we would hear from Hopkins sometime soon regarding Mark's referral for a third transplant, we learned this week that we will have to continue to be patient and wait as Mark's case has not yet been reviewed by the Transplant Team! As you might imagine, after learning this information, we have been upset, stressed, and angry to say the least! The story behind the referral is long and complicated, but here is what has happened in brief:

• We were officially referred to Hopkins in late May by UK who sent Mark's records to Hopkins at the time of referral.
• We received the referral packet in early June and submitted the referral forms within 2 weeks.
  
• During the first week of July, we received a voice mail from the Incompatible Kidney Program Coordinator saying we had forgotten to sign one form. We faxed the form the following day.
• In mid July, we were contacted by our insurance agency who stated that Hopkins is out of network and wanted to make sure we were in agreement to pay out of network charges. We agreed. Insurance agency informed us that evaluation at Hopkins was approved.
  
• On August 6th, we received a letter from Hopkins saying that Mark's file was incomplete and that if his file was not made complete within 45 days, his case would be listed as inactive and he would have to start the referral process over. We immediately contacted UK and Mark's Dialysis Nephrologist and were assured all records were being faxed immediately to Hopkins.
• I began calling the Program Coordinator regularly (i.e. up to three times per week) to ensure Mark's file was complete. Each time I called, I got her voice mail and asked for her to return my call to confirm Mark's file was complete, but never received a returned call.
• Last Wednesday, I called Hopkins and received a voice mail again. Frustrated and worried about the 45 day deadline approaching, I called a number for patients who had already been transplanted and spoke to a receptionist who provided me with the telephone numbers of three nurses working in the Incompatible Kidney Program. I spoke with one nurse who informed me that she could not believe that this situation had been going on since June and noted that most new referrals are seen at Hopkins in a timely manner. She informed me of what medical records were needed to complete Mark's file.
  
• While I was speaking to the nurse, I coincidentally received a voice mail from the Program Coordinator (i.e. the lady I had been calling for several weeks). I immediately returned her call. She informed me that she had not received my messages and that I was fortunate that she had not already changed Mark's status to inactive. I will not elaborate upon the phone call from the Program Coordinator, but will state that she spoke to me in an extremely rude and unprofessional manner as if I was ignorant and unworthy of her time and attention.
  
• I phoned UK and was told that Mark's records had already been submitted on two occasions, but would be sent for a third time. I went to Mark's Dialysis Nephrologist's office and requested that records be faxed. I waited for the records to be faxed from the Dialysis Center and heard the Dialysis nurse call Hopkins to confirm that records were received.
• I emailed the Program Coordinator at Hopkins the following day to inquire about the status of Mark's case. She emailed me on Friday stating that his file remained incomplete and listed several items (including the consent form we faxed in early July) that to my knowledge are already in her possession.
  
• I emailed the Program Coordinator stating that all records should be received and outlined the dates and times when records were sent. If I have not heard from her by tomorrow, I am planning on contacting her administrator.
  

As a result of the situation described above, Mark's case has not been yet been reviewed by Hopkins and absolutely nothing has happened toward a third transplant for nearly 4 months! It is ironic that we have been rushing to the mail box each afternoon prayerfully and anxiously awaiting a response from Hopkins when the physicians at Hopkins are not even aware of Mark's case! The anger and frustration we have felt this week has been indescribable! My Aunt often reminds me that God's timing is perfect...not too early and never too late. I am trying hold to these words and not question what has happened, but it is very difficult! As always, please continue to pray for our family. Please pray for us to have patience and a positive attitude while we continue waiting and while interacting with people who are disrespectful and either dishonest or extremely unorganized. However, more than anything, please pray for the Transplant Team who will hopefully be reviewing Mark's records sometime in the near future!

Mark Thomas' Reminder

My parents came up for dinner last night. Before we ate, Mark Thomas asked my mom to pray. After she said her prayer, Mark Thomas looked up and said, "Mimi, you forgot to pray for Daddy's kidneys!" Although kidney disease has been difficult for Mark to say the least, I am thankful that through this trial, Mark Thomas is learning the importance of prayer and faith. Although he doesn't realize the seriousness of his Dad's situation, he does seem to understand the importance of turning our problems over to our Heavenly Father. I am thankful for the reminder that good things can happen in the midst of not-so-good situations.

Praying and Waiting

As many of you know, our family is waiting to hear from Johns Hopkins with the decision of whether or not the referral from UK will be accepted and Mark will start the evaluation process for a third transplant. We submitted all of our paperwork and consent forms in early June. We've heard from our insurance company a few weeks ago. Apparently, Hopkins is "out of network" on our insurance plan. Humana wanted to make sure that we were willing to pay the "out of network" charges. Of course, we agreed and were told that Humana was pre-approving Mark for a transplant evaluation. The Transplant Management team at Humana thought that Hopkins would be contacting us soon with information about Mark's case. However, at present, we still haven't heard anything from Hopkins. So, we are waiting and praying.

Although we have enjoyed a wonderful summer (minus Mark's hospitalization in June), it is difficult to simply wait. It feels like we are at a crossroad...either we will start the journey for another transplant or we will have to go down a different road that entails coming to terms with "life on dialysis" or searching for another facility that would transplant Mark. To be honest, both options are really scary. The thought of another transplant is promising in so many ways, but can also cripple you with fear as it brings back so many painful memories. Of course there is always the chance that Hopkins will accept the referral, complete the evaluation process, and then decide Mark isn't a candidate for a third transplant. I'm not sure which would be worse....never going to Hopkins or getting your hopes up and then learning it won't work out? The thought of Hopkins saying "no" seems like the worst possibility. At what point do you give up on transplantation? It would be difficult to know when to stop searching and simply accept life as it is. I am praying that we will find God's peace in whatever situation is the outcome. I am also praying for strength and guidance.

On a positive note, Mark went back to work!!! About three weeks ago, he started working part-time as a Loan Reviewer at the Bank of Harlan! The Bank has been so extremely supportive of Mark throughout the situation with his health. After being gone nearly a year, they welcomed him back and have been very accommodating of his doctor's appointments and dialysis needs. We remain so thankful for the love and support of our community.

In the eyes of a child

I guess you never know how a parent's illness affects a child. It is difficult to know what you should share with your child. You don't want to say too much and you don't want to say too little. Mark and I have a tremendous support system in our family who does a great job at helping us with Mark Thomas when Mark is in the hospital. Although we don't ever have to worry about his care when we're away, I often worry about how he is processing it all. Yesterday, Mark Thomas looked at Mark, patted his face, and said, "Oh Daddy, I love you. I want you to be here forever." These words were so sweet and caring, but were also heartbreaking as they evidence Mark Thomas' worry and concern for his father. Childhood is not the time for worry and concern. I envisioned Mark Thomas' childhood as a carefree time of laughter, learning, and fun. For all of our blog followers who pray for our family, I'm asking for prayer for my precious baby boy. Please join me in lifting up Mark Thomas...may he feel secure and loved through a difficult time.

Report from Cystocopy

Mark had cystocopy this afternoon to determine the cause of the hematuria. The results indicated the presence of several blood clots in the transplanted kidney. This confirmed that Mark's body had started rejecting the transplanted kidney since being taken off the anti-rejection medications. Thus, the Transplant Team started Mark back on the immunosuppressive medications this evening. Although we feel blessed the cystocopy did not show something worse than clots, the fact that Mark will be on immunosuppression while he is on peritoneal dialysis is worrisome as it will make it more difficult to avoid infection (peritonitis). In addition, if the medications aren't effective, removing the transplanted kidney may be necessary. This is especially worrisome as Mark most likely will not be able to use peritoneal dialysis while healing from the surgery (nephrectomy).

Mark was scheduled to see the Cardiologist this morning regarding the clots in his heart. Obviously, we couldn't make it to the appointment. The Transplant Team arranged for the echocardiogram to be completed while Mark is an in-patient. They were hopeful the echo could be done after the cystocopy so we could go home today. Unfortunately, this didn't happen. So, we'll be here until tomorrow. We're hoping that Mark will get the echocardiogram early in the morning and that the Cardiologist will come and speak to us soon after so we will be discharged soon. As you might imagine, we are so eager to see Mark Thomas! Also, tomorrow is my niece's first birthday and Goggie and Pappy are coming home from Naples for the summer. So, we want to be home ASAP!

Admitted to UK due to clotting

Mark was admitted to the Transplant Unit early this morning after being in the ER last night. Last week, Mark noticed blood clots when urinating. He was being trained on a new dialysis machine and was seen by the dialysis Nephrologist in Hazard on Thursday and Friday. Mark's Nephrologist had instructed him to monitor the clotting and to go to the ER if the clotting worsened. We called the Transplant Team yesterday and were told to come on to the ER as clotting can be a sign of rejection. Although the transplanted kidney isn't fully working and Mark is no longer on immunosuppressive medications, he could still reject the kidney. The other potential cause of the bleeding could be some type of structural problem within the urinary tract. We were scheduled for an endoscopic assessment this morning in which a camera is used to detect any obstruction or structural problem. However, we kept getting bumped as more urgent cases were getting priority in the OR. So, Mark is on the schedule for the procedure tomorrow afternoon. Hopefully, the assessment will give the physicians the information about how to treat the problem. Things are kind of up in the air in that we could be discharged tomorrow if the assessment shows no huge problem and the Transplant Team thinks that use of immunosuppression could make the clotting stop OR we could be here for a while if the assessment shows the need for some type of more invasive procedure to fix any obstruction or structural deviation. Mark will go under general anesthesia tomorrow. Please pray that he won't experience any adverse reaction to anesthesia as he has in the past. We are trying to keep a positive attitude....it is just so hard to believe that Mark was at UK this time last year for the second transplant!