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!

Phone call from Hopkins received...records released!

Well...Mark received the phone call from Johns Hopkins today! There isn't really much to report and it isn't time to celebrate yet as the Transplant Team at Hopkins only called to request our address in order to send an informational packet and release of medical information. Thus, there still may be a chance that Hopkins will not accept the referral. While we still don't know what will happen with Hopkins, it was nice to receive the call and find out that things are moving forward. As always, thanks for the continued prayers and support.

Referred to Johns Hopkins

Mark and I went to the Transplant Clinic at UK this week for our last follow up appointment. Now that Mark has a dialysis routine established and has been weaned from the immunosuppression medications, he is officially being referred to Johns Hopkins. The Chief of the Transplant Team at UK has been in contact with a physician at Johns Hopkins regarding Mark's two failed kidney transplants. The team at Johns Hopkins is doing a research study on transplantation in individuals who present much like Mark. UK is sending Mark's medical record to Hopkins this week. There is no guarantee that Hopkins will accept Mark or will transplant him again. But, there is at least hope of another transplant for now. We should find out by the end of the month if Hopkins accepted the referral and (if so) when we will go to Baltimore. Please continue praying for Mark. If Hopkins decides Mark is not a candidate for another transplant, we will have to come to terms with being on dialysis for life. We will post information about the referral to Johns Hopkins as soon as we find out more!