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 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 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.

Monday, September 6, 2010

Extremely frustrated...still waiting for word from 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!

Tuesday, July 27, 2010

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.

Wednesday, July 21, 2010

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.

Friday, June 11, 2010

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.

Monday, June 7, 2010

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!

Sunday, June 6, 2010

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 is just so hard to believe that Mark was at UK this time last year for the second transplant!

Friday, May 28, 2010

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.

Saturday, May 8, 2010

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!

Tuesday, March 2, 2010

Report from Cardiology/update on dialysis

Mark saw the Cardiothoracic Surgeon yesterday at UK. Since being discharged in mid February, the Cardiothoracic Surgeon has monitored Mark's heart through various imaging tests. In addition, Mark has been taking an oral blood thinner to prohibit formation of any additional clots. The Cardiologist who read the imaging tests feel like the masses in Mark's heart are most likely clots. The clots are slightly-almost insignificantly smaller-than they were when Mark was hospitalized. Although the change is slight, the fact that the clots are smaller serves as evidence that they are indeed clots and not a tumor. Although having two clots in the heart is definitely worrisome, it was wonderful news to hear that the clots are smaller. The Cardiothoracic surgeon did not think that the clots would jeopardize Mark's candidacy for a future transplant. He will continue to monitor Mark although our next appointment with Cardiology is not for three months! Mark is back at UK tomorrow for removal of his midline used for the IV antibiotic. He will then go back to transplant later this month. Peritoneal dialysis seems to be working well. Mark feels much better than he has for months. Although doing a PD exchange every 6 hours is burdensome at times, it is well worth the sacrifice as Mark feels and looks great! Praise be to our God for this blessing!

Thursday, February 4, 2010

We're home...traveling to Hazard for PD training

Mark was discharged from UK Tuesday evening. As you would imagine, we were really anxious to get home and see Mark Thomas. A good friend offered us two great tickets to see UK play on Tuesday night. Much to my surprise, my husband-a huge UK fan- turned them down saying he would rather see Mark Thomas than John Wall! Yesterday, we traveled to Hazard for our first training session on peritoneal dialysis. We will be going to "PD Boot Camp" for at least 4 more days. We're hoping that the PD catheter will work without complication and that the weather will cooperate and we can travel over the mountain safely. Mark is completing blood work every day to continually monitor the consistency of his blood. He is now on an oral blood thinner. The cardiologists are continuing to monitor the clots in his heart. It is our understanding that the longer blood clots are present in your body the less likely they are to travel. The echocardiogram completed on Tuesday indicated no significant change in the size of the clots. The fact that the clots have not increased in size is great news. If the clots had grown or if new clots were present, Mark may have had to have open heart surgery. The presence of two clots is worrisome to say the least, but we are very thankful to avoid a major surgery. We're praying that the clots will resolve, but understand this may take time. As always, please pray for our family! We appreciate all the love and support from everyone. It has meant so much. We know God has a perfect plan for Mark. We are trying to trust in Him without losing patience or hope! Off to Hazard for now...I'll post more information about Mark's health soon!

Monday, February 1, 2010

Emotional day....may be discharged tomorrow

Not much has changed with Mark's health since our last blog. Mark spent the weekend recovering from the surgery on Thursday. We celebrated my birthday on Friday and were able to visit with Mark Thomas and our family. On Thursday and Friday, Mark had some pretty significant pain in his abdomen from the placement of the peritoneal dialysis catheter. We learned today that the fistula that was created in Mark's forearm during surgery on Thursday is not functioning. The physicians suspect that Mark's clotting issue contributed to the fistula not working. Although we were aware of the potential threat blood clotting issues create for fistulas, we were really hopeful that the surgery would have been successful. It was difficult to hear that the fistula isn't working. It is our understanding that the veins and arteries used in creating fistulas can never be used in another fistula in the future. Thus,the fistula not working means that we lost one "life line" for Mark. As we mentioned in an earlier post, the intent of the surgery on Thursday was to create two types of dialysis accesses so that we would have two options for dialysis. The physicians talked about trying to repair the failed fistula or creating a new one. However, they decided against least for right now. So, the plan is to continue monitoring Mark's blood work to make sure he is safe to go without dialysis at least for a few more days so the incisions around the catheter can heal and so we can be trained on peritoneal dialysis. We may be discharged tomorrow. At that point, we will go to Hazard for a 5 day training on peritoneal dialysis. Before we are discharged, we think that the cardiologists will complete another echocardiogram to gain more information about the clots in Mark's heart. We are uncertain if this will happen today or tomorrow. Today Mark had a mid-line placed in his arm to allow him to receive IV antibiotics when we are discharged. We will be trained on how to administer this drug as well. Please continue to pray for Mark. We are hoping that no problems arise with peritoneal dialysis!

Thursday, January 28, 2010

Surgery is complete

Mark's surgery is complete. He is now back in his room on the 8th floor. However, he is in significant pain. Please keep praying!

Surgery has started

Mark is now in the OR for the surgery to create a fistula in his forearm and place a PD catheter in his abdomen. The surgery should take several hours to complete. The surgeon estimated it would be 4 or 5 hours before we would see Mark in the recovery room. Although we have not spoken to the Cardiologists, a resident told us yesterday that the echocardiogram they completed yesterday indicated no change in the blood clots in Mark's heart. We are anxious to hear what the Cardiologists' plans are for Mark's care. We were hopeful that the blood clots would have decreased in size, but understand that this may take time. The Transplant Team feels like the Cardiologists will repeat the echocardiogram sometime next week and continue to closely monitor Mark. Please lift Mark and our family up in prayer this morning. Rhonda, Larry, and I are anxiously awaiting the phone call from the OR nurse with an update on the surgery.

Monday, January 25, 2010

Praying, waiting, and planning

Not much has changed since our last blog entry. Mark is scheduled to have surgery to place the PD catheter in his abdomen and to create a fistula in his forearm on Thursday. This will allow him to have two types of access for dialysis. Mark is also scheduled to have another echocardiogram on Wednesday. This will provide information about the effect of the blood thinner on the clots in his heart. I would imagine that the Cardiologist will then make a decision about whether or not Mark needs open heart surgery.

Mark's blood cultures are continuing to show that the infection has cleared. The Infectious Disease physicians have also been following Mark's case. They would like for him to receive IV antibiotics for the next 6 weeks. This would mean that Mark would be discharged with a "picc line" or "midline" which are a type of IV that can stay in your body for several weeks. This is problematic though because of issues with clotting and because the veins or arteries used in picc lines and midlines can never be used as an access for dialysis. So, we are trying to work something out where Mark will either receive home health or will go to a physician's office in Harlan to receive the IV when we are discharged.

The Team is also trying to make arrangements for us to be trained on peritoneal dialysis. Typically, patients and families receive a training on PD before the catheter is placed. Although I think we will be in the hospital through next weekend so that the Team can make sure the PD catheter is working, I am unsure if it will be possible for us to be trained before being discharged. We are trying to make arrangements to get trained by the dialysis clinic who follows Mark in Harlan. There was some talk of us getting trained in Lexington the week of February 1st by a different dialysis clinic. However, this would mean that we would be followed by a different Nephrologist and would have to travel to Lexington for all follow up appointments. We feel really comfortable with Mark's Nephrologist in Harlan and really like the nurses at his dialysis clinic. They all have been very supportive of Mark and have provided exceptional care. We are hopeful it will work out for us to stay under the care of Dr. Chandarana in Harlan.

As always, we thank you all for the prayers and support. We are trying to stay patient and calm. We know God is in control of this situation and that He has a good and perfect plan for our family. He will work out all the details. Today we received news that several of my colleagues at Harlan County Public Schools have donated sick days to me. This was an answered prayer as I had used my last day last Thursday. I don't have words to express my gratitude to my many gave me days last year during the transplants...the thought of others making such a sacrifice for my family is overwhelming. All we can do is say "thank you" and praise God for continuing to provide for our family.

Thursday, January 21, 2010

Today's update: Plans for Mark's Care Developed, Surgery next week

The Transplant Team made several decisions today and developed a plan for Mark's care while we are here. With respect to what the physicians believe are clots in Mark's heart, the plan has not changed. Mark is receiving the blood thinner heparin through his IV. The hope is that the blood thinners will prevent the clots from getting any bigger. Mark will have another echocardiogram next week. At that point, the Cardiologist and Cardiothoracic Surgeon will determine if the blood thinners are working. As we posted yesterday, if the clots are any larger when they repeat the echocardiogram next week, open heart surgery may be required.

Yesterday evening, Mark's potassium was very high. The Team had hoped to avoid replacing the dialysis catheter for a few days as catheters often set up infection. Also, they wanted the antibiotics to have time to completely clear his infection. However, going without dialysis was not an option. So, last night, the Nephrologist placed a temporary dialysis catheter in his groin. Mark had dialysis last night.

Another complex issue with Mark's health is deciding upon a long term dialysis plan. All of the dialysis options have their own risks and none of them seem to really be a great solution given Mark's history. Hemo dialysis, or the type of dialysis that uses the blood and is typically completed at a dialysis clinic, typically involves use of a vascular access or fistula in the forearm. Mark does not have a fistula. This is why he has been using a temporary catheter in the chest that is tunneled next to the heart. However, Mark's clots in the heart make continued use of a tunneled catheter risky and problematic. Catheters can be tunneled other places like the groin. However, catheters in the groin are not used for long as they often are easier to get infected. Creating a fistula in the arm requires a surgery. The surgeon joins an artery and vein in the forearm. However, even after the fistula is created, it cannot be used right away. It may take several weeks or even months for the fistula to mature and grow big enough to be used in dialysis. Although fistulas are less likely than catheters to become infected, they are prone to clot. This is a real concern with Mark given Mark's history of clotting. Peritoneal dialysis, or the type of dialysis that uses the peritoneal cavity or "gut" and is done at home, is the other dialysis option for Mark. Peritoneal dialysis involves the use of a catheter in the abdomen. Placement of this catheter requires surgery. The catheter cannot be used right away either. However, it typically can be used sooner than a fistula. However, because peritoneal dialysis uses the "gut", Mark's repaired hernia site and placement of the meshes over the hernia and transplanted kidney may make peritoneal dialysis difficult. In addition to these concerns, it is uncertain whether Mark's infection has cleared. Although Mark's blood is getting drawn each day, it takes several days for cultures to "grow" infection. The catheter that was removed on Tuesday did have some type of infection on it. The Transplant Team is consulting with the Infectious Disease physicians to determine what type of antibiotics are needed to treat Mark. They are also trying to decide how long they should wait before any surgery is completed. Typically, physicians do not want to do surgery with a known infection.

With all of these things taken into consideration, the Team decided to continue the blood thinners and IV antibiotics over the weekend and schedule a surgery next week (possibly Wednesday or Thursday) to place a fistula in Mark's arm and a catheter in Mark's abdomen for peritoneal dialysis. We will be trained on peritoneal dialysis while we are here. They will not be tunneling another catheter in the chest. If all goes well, we will leave here on peritoneal dialysis.

Thanks for all the prayers, thoughts, emails, and calls. We appreciate all the support and are asking for continued prayer that the clots in Mark's heart will not require surgery to treat. We will update the blog as we learn the exact date of the surgery next week.

Wednesday, January 20, 2010

Report from Cardiothoracic Team

The Transplant Team and Cardiothoracic Surgeon visited Mark this afternoon. They are still unsure exactly what the masses are in Mark's heart. However, their best guess is that they are clots given Mark's history with clotting. (Remember that immediately after my kidney was placed in Mark's body back in March, his body clotted it off). They are treating Mark right now with blood thinners and will monitor him over the next few days to see how he responds. If the blood thinners are successful, the clots will not increase in size. The Team will then wean Mark from the IV blood thinners to a blood thinner taken by mouth. If the blood thinners are not successful and the clots continue to increase in size, open heart surgery may be required. I am unsure how long it will take for the Team to make a decision about if the blood thinners are working. Please keep praying that God's name will be glorified in this situation.

Results from TEE

Mark had a TEE (transesophageal endocardiography) this morning. The test involved placing a scope down Mark's throat to the esophagus to allow the Cardiologist to view Mark's heart from behind. As we mentioned last night, the echocardiogram they did yesterday showed a mass in one of the chambers of his heart. The TEE was done today to get a better view of the mass in an effort to determine what it is. Unfortunately, the TEE indicated the presence of another abnormality or mass in the superior vena cava or SVC which is a vein that leads to the heart. In addition, the Cardiologist is still uncertain exactly what the masses are. They could be clots, vegetations (a collection of bacteria, platelets, proteins, etc.), or a combination of the two. So, right now, we are waiting for the Transplant Team to consult with the Cardiologists to determine what to do. They started Mark on a blood thinner. Please continue to pray.

Tuesday, January 19, 2010

Urgent Request for Prayer

A lot has happened today. Here is a brief summary: Mark had surgery this afternoon to remove the catheter in his chest for dialysis. He also had an echocardiogram this morning to make sure the infection was not in a valve of his heart. The echo came back with a potential abnormality. They repeated the echo after surgery this afternoon and continued to see a mass in one of the chambers of the heart. They are thinking it could be a benign tumor that only needs monitoring OR it could be a "vegetation" that requires open heart surgery. They are completing another type of heart imaging test in the morning to find out more. We'll know tomorrow afternoon which it is. We are asking for prayer as we are fearful that we may be facing a major surgery in the near future. On a positive note, the scan they did last night showed that Mark does not have a hernia around the transplanted kidney. The Team does not think removing the transplanted kidney will be necessary. We will post more information as we find out more...please keep praying!

Monday, January 18, 2010

Admitted due to lingering infection

As many of you know, Mark has been struggling with an infection for several weeks now. He has felt very badly battling with fever, fatigue, nausea, decreased appetite, etc. His Nephrologist at dialysis has been treating him with IV antibiotics over the past few weeks. However, his body does not seem to be responding to the antibiotics as his cultures are continuing to indicate the presence of infection. Because of this, the dialysis Nephrologist sent us to UK to be admitted in order for the Transplant Team to investigate the cause and location of the infection. The catheter used for dialysis, the mesh around the transplanted kidney, and the mesh around Mark's repaired hernia could all possibly be the location of the infection. If the catheter is the site of infection, Mark will undergo a procedure to replace the catheter. Surgery will be required if the infection is in a mesh. If this is the case, I anticipate that the Team will explore removing the transplanted kidney as they have talked about this at his past visit. As we mentioned in a previous blog, Mark's hernia has returned. We were scheduled for a consultation on Thursday for the surgery to repair the hernia. So, we're hopeful that if Mark has to have a surgery to remove a mesh, they can repair the hernia at the same time. We are in the ER right now and hope to be in a room on the transplant floor sometime soon. Please continue to pray for Mark!