Wednesday, December 9, 2009

No news is good least for now!

Once again, I'll start by apologizing for not updating Mark's kidney transplant blog for several weeks. However, as my title states, there is really no new news to least not right now. We managed to stay out of the hospital over the Thanksgiving holiday and are hoping to do the same over Christmas break. Since being discharged from the hospital in October, Mark has resumed dialysis three times weekly. While dialysis is a blessing in the sense that it does the job Mark's kidneys cannot do, it is also a nuisance. Mark has a lot of adverse side effects from dialysis (nausea, fatigue, etc.). Mark has continued with his visits to the transplant clinic-although the frequency of the visits to Lexington has decreased. At his last visit, the Team expressed concern with his abdomen. Mark's abdomen is beginning to protrude in the same place it did prior to his hernia surgery. The Team is thinking that either Mark's hernia has returned or he has developed an issue with the "mesh" they placed around Justin's kidney back in June. Thus, they completed an ultrasound last Thursday. We are awaiting these results. If the hernia has returned, the Team will complete a surgery to repair the hernia. They have also discussed removing the transplanted kidney during the same surgery as the function of the kidney is still in question. Although the last scan indicated the kidney is perfused or is receiving blood flow, the kidney has never really "kicked in" and has not helped to improve Mark's overall kidney function. Removing Justin's kidney is a really sad thought. It would mean that the Team has officially given up on the kidney ever working. However, it would allow Mark to stop taking all of the anti-rejection medications. The Team is also considering placing the PD catheter during the surgery as well. This would allow Mark to begin doing dialysis at home. If you recall, Mark has been attempting to get the PD catheter placed for several months now. This has not happened due to his frequent hospitalizations and infections. It is our understanding that he would have to be off of the antibiotics used to treat infections for several weeks before the surgery to place the catheter could be scheduled. Although the thought of another surgery is very troubling, we are trying to stay focused on the positives. If indeed one surgery can do all three things (repair the hernia, remove the kidney, place the PD catheter), then we are eager to get this behind us. We will keep you updated on the results of the ultrasound and plans for the future.

Saturday, October 24, 2009

Unexpectedly in ICU

Mark spent three days in ICU at Harlan ARH this week. Last week, the Nephrologist who is following Mark at the dialysis clinic in Harlan noticed a very slight increase in his kidney function. Mark's creatinine had dropped to 3.8. He was making plenty of urine. His overall kidney function was estimated to be approximately 25%. Anything below 15% requires dialysis. Because Mark's kidney function was higher than 20%, his Nephrologist wanted to experiment with taking him off of dialysis to see if his kidneys could work independently. When we heard this news last week, we decided to be cautiously happy. We understood that taking Mark off of dialysis could only be temporary. The doctor was planning on monitoring Mark closely and deciding week to week whether or not he would need dialysis. We also understood that a creatinine level of 3.8 is not a significant enough of a drop to think that the transplanted kidney was working. Kidney function of 25% is still considered to be stage four renal disease. Well....on Wednesday morning, Mark went for the blood work the Nephrologist had ordered. He had been feeling fine all week. He had not experienced any symptoms of uremia or elevated potassium. Around noon, the results from the blood work came back. The Nephrologist called Mark and told him to report to the ER as soon as possible. His potassium level and creatinine levels had jumped back up. In fact, his potassium was in a dangerous level-high enough to cause a heart attack. So, off we went to Harlan's ER. The physician at ARH gave Mark several medications to control his potassium. Mark was dialyzed as an inpatient also. His potassium began to drop. However, Mark's Neprhologist decided to keep him overnight for continued monitoring. They decided to place him in ICU... I think partly because of the heart monitoring and partly because of the fact that Mark is immunosuppressed and there is a high incidence of H1N1 in Harlan. On Thursday, Mark's potassium had dropped to a normal level at the 6:00am blood work, but increased by noon. So, they decided to keep him another night. From that point, each blood sample indicated that his potassium was controlled. So, we were discharged yesterday afternoon. We are very happy to be home. However, our spirits are a little low. We are beyond disappointed that Mark's body could not tolerate the absence of dialysis. In addition, several weeks ago, we had booked a weekend trip with some of our friends. We had really been looking forward to this "retreat". However, the doctor recommended that we stay at home. We are also really concerned that we didn't realize that Mark's levels were so high. As I mentioned above, he was feeling fine and did not have any symptoms of elevated potassium. This is really scary and causes us both a great deal of anxiety. As always, I'm asking for continued prayer for our family.

Friday, September 25, 2009

We're home!

I am thrilled to report that we are home! Mark was discharged from UK late yesterday afternoon. The team decided that an oral antibiotic was sufficient in treating any residual infection. The Team was considering placing a "picc line" in Mark's forearm to allow him to continue receiving an IV antibiotic. However, placement of a picc line can be problematic for dialysis patients. Use of picc lines can potentially ruin the arteries/veins that may be used in creating a vascular access for dialysis. We were relieved to avoid this! Mark will continue to have blood cultures drawn when he is at the dialysis clinic to ensure that no bacteria is growing. Thanks for all the thoughts and prayers over the past week! In addition to Mark feeling so bad, it was really difficult to be away from Mark Thomas for an entire week! We are looking forward to a weekend at home with our little guy!

Wednesday, September 23, 2009

Hospitalized for a few more days

Mark's new catheter was placed in his chest this morning. We are thankful that this is behind us. Mark experienced a great deal of pain when the first catheter was placed. The placement of the catheter this morning was not as bad as the initial one, but Mark is pretty sore. As we've mentioned in previous posts, the Cannon catheter is placed in the chest-just below the collar bone. The catheter is tunneled down into the chest and serves as a temporary port for dialysis. Each time Mark is dialyzed, the catheter is used as the dialysis machine pumps his blood out, cleans it, and pumps it back into his body. The catheter is considered as a "temporary port" because it is not meant to stay in a patient's body more than a few months due to the risk of infection...which we know can happen easily!

It was our understanding that the Transplant Team's plan was to place the new catheter, dialyze Mark, and send him home on oral antibiotics. This morning, the cultures back from the lab that had been drawn from days past no longer indicated the presence of any infection. However, this afternoon, the Team received another report from the lab on a culture drawn a few days ago from behind Mark's old catheter (the one that was removed on Monday). This culture showed the presence of bacteria. Thus, we will have to stay here to receive more antibiotics via IV. This was discouraging news as we were ready to go home! Please pray that the infection clears. We are hopeful that the cultures drawn today will not show any infection. If the infection does not go away and the catheter no longer seems like the cause of infection, the Team will have to consider doing something more invasive to identify a new location or cause of the infection.

Monday, September 21, 2009

Difficult day...but at least the catheter is out!

Today has been difficult for Mark. He started feeling pretty bad late last night and early this morning. Mark went to dialysis around 7:30 this morning. While he was receiving dialysis, he started having rigors and became very nauseous. It was then that the Team decided that the catheter used for dialysis had to be removed. Using the catheter for dialysis seemed to exacerbate Mark's symptoms. I guess this served as proof that the infection had contaminated the catheter. So, the catheter was removed late this afternoon. We were very nervous about the removal of the catheter. However, after its removal, Mark said it wasn't as bad as he had anticipated. The plan now is to wait and see how Mark's blood work looks after having the catheter removed and receiving the IV antibiotics. Hopefully, Mark's white blood cell count will continue to drop. This would mean that we could go home with an antibiotic to help fight the infection. As we mentioned in an earlier post, there is some concern about the presence of an abscess around the hernia repair site. If Mark's blood work does not show improvement, the Team will have to consider something more invasive (i.e. sampling the fluid around the hernia repair site or surgery to reopen the hernia repair site to remove any abscess).

Mark will have another catheter placed in his chest on Wednesday. When Mark had the catheter placed in June, it was painful and nerve wracking. The catheter is "tunneled" down next to patient's heart. The patient is given some type of sedative, but is not under general anesthesia. Mark is not looking forward to this. Please pray for him-especially on Wednesday.

Despite not knowing what lies ahead, Mark and I are trying to stay positive. I've said it before, and I'll say it again, Mark is the strongest and bravest man I know. He has been through a great deal. I admire his strength. We spent some time this evening reading Paul's letter to the Thessalonian gave us comfort to see how other believers have dealt with affliction and suffering. We studied the definition of endure...the Greek word translated for endure is anecho which means "to patiently wait." We know that God gives inner strength to the believer to enable him to be steadfast, to patiently wait in the midst of difficult circumstances. We are just praying for that inner strength!!!

Sunday, September 20, 2009

Update on Mark

We're happy to be out of the ER and in a room on the Transplant Floor. The cultures are showing Mark has a rare infection that only immunosuppressed patients can acquire. The exact location/cause of the infection is still undetermined. Mark's incision site around the hernia was somewhat red on Friday morning. The Team ordered an ultrasound to investigate if the infection was related to the hernia repair. The ultrasound of the incision from Mark's hernia repair showed a potential abnormality. However, Mark's abdomen no longer appears as red. He feels much better and seems to be responding to the IV antibiotics. To further investigate the hernia repair site, the Team completed a scan late last night to help identify any abscess. At present, we are waiting for the results of this scan. PLEASE PRAY...if the scan shows an abscess, Mark would have to undergo another surgery! The Team decided to wait to remove the catheter in Mark's chest used for dialysis. Typically, when a patient has a temporary port and an infection, the Team will remove the port and not replace it for a few days. This allows the patient to go a few days without a foreign object like a plastic catheter in his or her blood stream. However, Mark's potassium is elevated. He may need dialysis tomorrow to help combat the potassium. Given his high potassium and the fact that the scan results are not yet complete, the Team will make a decision later today or tomorrow about whether or not to remove the catheter. As always, please pray for Mark! His spirits are low-especially considering we could see Commonwealth stadium from our room on the 8th floor but could not watch the game-even on television! Mark is beyond ready to be back at home!

Friday, September 18, 2009

Back at UK

Unfortunately, Mark is back at UK. He had a rough past couple of days-feeling very nauseous and weak. Yesterday evening he had a fever and starting having rigors. We called the Transplant Team as this can be a sign of infection or rejection. The Team advised us to come to the ER at UK. We arrived at the ER at around 9:30 last night and we are still here!!! We've been informed that a room on the Transplant wing has been assigned to us. I guess the process of cleaning and preparing a room for a transplant patient is complex. Hopefully, this will be finished soon! It seems so crazy to have a transplant patient wait in such a germy environment!

The blood work completed on Mark last night shows an elevation in his white blood cell count. The physicians are trying to determine the location and cause of infection. The infection could be around the incision site from the hernia repair. This would be the worst case scenario as it may require a surgery to remove the "mesh" used to repair the hernia. The infection could also be from the catheter in Mark's chest used for dialysis. Temporary ports or catheters in the chest for dialysis frequently serve as an infection site for patients who are immunosuppressed. If this is the case, the Team would remove the catheter and replace it in another location. This is also a troublesome scenario as Mark experienced a great deal of discomfort when the catheter was originally placed in his chest. It is my understanding that the infection could also be from another reason (i.e. exposure to bacteria, etc.). This is probably the least likely given Mark's situation, but it is the situation for which we are hoping! As you remember, Mark was hospitalized in late July for an infection. This infection was not due to his catheter and was treated with strong IV antibiotics. He was in the hospital for about 3 days and was released. Hopefully, this will happen again! We will update the blog as we learn more. Please keep praying for Mark!

Friday, September 4, 2009

We're home!

Mark was discharged from the hospital yesterday evening. His potassium, creatinine, and blood pressure were high yesterday morning. The Team would not discharge him until his potassium dropped to a safer level. Because of the high levels of potassium and creatinine, Mark received dialysis while at UK. The Team is now trying to figure out how much dialysis is necessary (one time weekly, two times weekly, or three times weekly). It seems that the transplanted kidney is working better than expected prior to the scan last Thursday, but it isn't working well enough to avoid dialysis all together. Mark will go back to the Transplant Clinic on Thursday. Hopefully, we'll find out more information then! We plan on enjoying a great Labor Day weekend at home with friends and family. We hope everyone does the same! Thanks for all the prayers!

Wednesday, September 2, 2009

Surgery is complete!

The surgery is complete! All went well! There were no complications. Dr. Gedaly said the hernia was quite large, but he anticipates that Mark will recover from the surgery with no problem. Mark has been in the Post Anesthesia Care Unit most of the afternoon. Transplant patients are usually placed in rooms that require special preparation due to the patient's immunosuppression. We had to wait until the room was ready. However, we're now in room 832. We should find out in the morning what the Team will do about Mark's increase in creatinine. Mark is in some significant pain. Please pray for him tonight!

Mark is in the OR

Mark just left the prep room and is now in the operating room. The surgery should take about 2 hours. I will update the blog when he is out of surgery. Please keep praying!

Surgery update

Mark has been instructed to report to UK at 8:45 this morning. His hernia surgery is the second scheduled surgery today unless an emergency surgery causes it to be postponed. If it works out that his surgery truly is second, I am thinking it may be completed around 11:30 or 12:00. Yesterday Mark's blood work indicated an increase in creatinine. It was 4.0 last Thursday and is now 4.9. This is not good news-we will find out today what the Transplant Team will decide about dialysis. As always, we are asking for prayer. Please pray specifically for Dr. Roberto Gedaly-the Transplant Surgeon who is completing the surgery. Also, please pray for the Anesthesiologist who will be assigned to Mark's case today. Mark had difficulty waking from the anesthesia during the first transplant. So, we are always especially apprehensive about general anesthesia! Also, please pray for my brave husband. Although he is the bravest and strongest man I know, it is difficult to see him face his sixth surgery since March! I will post more as we learn more this morning. I am hopeful that I can get our laptop to pick up the wireless signal at UK today!

Sunday, August 30, 2009

Airlifted to UK last night...home today

As many of you have heard, Mark was airlifted to UK last night around 9:00pm. We had been enjoying a typical Saturday in Harlan. Around 4:00, Mark started having severe abdominal pain. He also started vomiting (a sign of uremia/kidney failure). We called the Transplant Team's 24 hour nurse who advised us to go to the local ER. At ARH, Mark's creatinine had increased to 5.1. Not only had Mark's creatinine's levels increased, but his potassium was very high. Uncontrolled potassium can lead to heart problems. ARH gave Mark medications to help control the potassium and pain. They also completed x-rays of the hernia around the transplanted kidney. The x-rays indicated that his bowels in the herniated area may have become entangled or obstructed. Given the elevated creatinine, potassium, and the results of the x-rays, ARH made the decision to airlift him to UK. When Mark left ARH, we were under the impression that he may need emergency surgery to repair the hernia. However, this was not needed. When he arrived at UK, the ER physicians repeated the x-rays and blood work. The x-rays showed only air pockets in the hernia. Mark's creatinine had dropped down to 4.6 and his potassium was much better controlled. He was only in minor pain. So, around 2:00am, we were discharged! The ER physicians expressed that you can never be too cautious with transplant recipients. They did not have an absolute explanation for what caused the severe pain or what caused the results of the x-rays to differ. Personally, I do not believe Mark's pain was due to air pockets in the hernia. I don't think ARH made a mistake in the x-rays or misjudged sending him to UK. I suspect that Mark's bowels were obstructed or entangled initially. Maybe the pain medication allowed him to relax which helped the bowels return to a more normal position. To me, the best explanation is that the Lord performed a miracle on Mark's behalf. So, I invite you to join me in praising our Lord for His mercifulness!

Thursday, August 27, 2009

Good news at last!!! Please keep praying!!!

I am so happy to report that we received good news from the Transplant Team today!!! As I posted in the previous blog, Mark has a hernia around the transplanted kidney. Before scheduling the surgery to repair the hernia, the Transplant Team wanted to complete a new scan of the transplanted kidney. If the scan had shown decreased blood flow to the transplanted kidney, the surgeon would have removed the transplanted kidney when repairing the hernia. However, the scan today indicated an improvement in blood flow since the last scan! At this point, we are cautiously happy! Mark's creatinine is around 4.0. This is still high. As we've mentioned in previous posts, successful kidney transplants usually result in creatinine dropping to the 1.0 to 2.0 range. The Team decided to have Mark skip two dialysis sessions-the session on Friday and Monday. They will recheck his blood work on Tuesday. I suppose this will give them information about how the transplanted kidney is filtering waste without the help of dialysis. Upon receiving the results of his blood work, they will reassess the situation. Mark is scheduled for the surgery to repair the hernia on Wednesday of next week. His hernia is quite large-so he will have to spend at least one night in the hospital. As always, we are asking for continued prayer. We are praising God for the encouraging news we received today. In addition, we are praying that the blood work on Tuesday indicates continued improvement and a drop in creatinine. Finally, we are praying for the surgery to go smoothly on Wednesday.

Sunday, August 16, 2009

Update on Mark

Once again, I'll start by apologizing for not updating the blog in several weeks. It has been really hectic at our home lately. As I mentioned in the previous post, we had hard wood floors installed in our foyer, living room, and dining room. What we thought would be a three day project turned into several weeks! We decided to have a wall knocked out and to install wainscoting in the dining room. Despite the fact that our house has been a huge mess for several weeks now, we are thrilled with the results!

On Wednesday of the week before last, Mark had a appointment with the physician who places catheters for peritoneal dialysis (i.e. the type of dialysis that can be done at home while you sleep). Remember that the infection Mark had contracted a few weeks ago postponed his appointment with this surgeon. We were hopeful that the surgeon would schedule the surgery the following week. However, he expressed concern about the surgery due to Mark's abdomen being swollen and somewhat protruded around the site where Justin's kidney was placed. There was also some concern about the placement of the "mesh" the Transplant Surgeon had placed around Justin's kidney during the second surgery in June. Thus, the surgeon wanted to wait until he had spoken with the Transplant Team before scheduling the surgery.

Mark had his check up with the Transplant Team on Thursday of last week. We were eager to meet with the Team to find out about the surgery for the peritoneal catheter. In addition, when we had attended the weekly check-up prior to this visit, Mark was seen by a Nephrologist who is not the physician who is following our case. This physician had no new information and couldn't answer any of our questions. Although Mark was seen on Thursday by Dr. Waid-the Nephrologist who is following his case, we unfortunately received some bad news. Mark has a hernia around the transplanted kidney. Not only does this mean that he cannot have the surgery to place the catheter for peritoneal dialysis anytime soon, it means that Mark will have to undergo two different surgeries sometime in the near future. One surgery will be completed to repair the hernia. This will be an inpatient surgery requiring general anesthesia. Secondly, Mark will have a surgery to create a fistula in his forearm to allow him to continue with hemodialysis. Remember that hemodialysis is the type of dialysis that uses the blood and is typically completed at a dialysis center. At present, Mark has a catheter in his chest to allow for hemodialysis. However, this catheter serves as a temporary port. The type of catheter in his chest frequently causes infection. Thus, if a patient is going to be on dialysis for an extended period of time, a more permanent port is created. The fistula will be created by joining an artery and vein in his forearm. This surgery will be outpatient and requires only a local anesthetic. Needless to say, Thursday was a rough day for us. Hemodialysis seems to be very draining for Mark-both physically and mentally. Going to a center for 4 hours three times weekly with people who are much older and seem much sicker than you would have to be difficult. In addition, hemodialysis requires a strict diet that is frustrating at times. We were really looking forward to being able to complete dialysis at home. Mark is eager to go back to work. Peritoneal dialysis would have allowed him to do this. We were viewing the surgery for the catheter for peritoneal dialysis as one step closer to a more normal lifestyle. So, Thursday was a bad day to say the least.

We did find out some more information about the sample of Mark's blood that was sent to UCLA and John Hopkins for testing. I will post more information on this sometime soon. It is not necessarily good news, but at least it is news! It is kind of complex and difficult to understand. I'll do some more reading before I attempt to blog about it! As always, thanks for the continued prayers.

Despite the twists and turns of this journey, I still believe in the power of prayer and the power of our God. I am still praying that God will place His healing hand upon the transplanted kidney and allow it to start working! I understand this may be a long shot. I know this may sound cliche, but I believe in miracles. A miracle is exactly what Mark needs. So, I'm not going to stop praying for one despite how bad this situation may seem. Please don't stop praying for Mark!

Wednesday, July 22, 2009

We're home!

Just wanted to let everyone know that Mark was discharged from the hospital on Monday afternoon. He was put on IV antibiotics throughout the weekend. When we were admitted on Friday, the physicians were suspicious that the catheter in Mark's chest used for dialysis may be a source of infection. Luckily, the team decided that removing the catheter was not necessary! At one point over the weekend, we thought that Mark would go home on IV antibiotics. This would have meant placing another port in his arm and having Home Health come and train us on how to use the IV port. But, the infection Mark has is responsive to antibiotics you take by mouth. So, we avoided this also! Mark will be on oral antibiotics for 14 days. This will postpone his surgery that was tentatively scheduled for next week to place the peritoneal dialysis catheter in his abdomen. Since we were in Lexington on Monday, we do not have to go to the Transplant Clinic this week. So, we are happy to report that we are home for a while! My family has scheduled a mini-vacation to Gatlinburg this weekend to celebrate Mark and my brother Josh's birthday. So, we will be getting some much needed R and R from Friday until Monday!!! When we return from Gatlinburg, I'll be sure to post pictures of Mark Thomas. We are planning on taking him to the Aquarium. He is so excited about seeing "big sarks"(i.e."Big Sharks")!!

We are staying with my parent's this week. We are having hard wood installed in our home. Mark cannot be around the dust and debris. So, if you need us, please contact us by email or at my parent's home.

Saturday, July 18, 2009

Readmitted with infection!

Mark had his weekly check-up with the Transplant Team on Thursday. When we were at the clinic, he was running a high fever. The Team completed blood work and sent him for a chest X-ray. Mark had been feeling poorly for a few days. He had been experiencing tremors during the night and felt a little nauseous. However, after spending all day in the clinic, Mark started to feel a little better by mid-afternoon. In fact, Dr. Waid (Neprhologist with the Transplant Team) decided to send Mark home. His fever had dropped and the chest X-ray showed no problematic signs.

On Friday afternoon, Mark went to dialysis in Harlan. When he was there, the Transplant Team called and informed us that his blood work indicated infection. Because Mark is taking anti-rejection medications, his immune system is compromised, making it hard for his body to fight off any infections. Thus, the Team decided to admit him to administer IV antibiotics. It is likely that the port in Mark's chest used for dialysis is infected. We are thinking they will remove the port on Monday and replace it with another port maybe in a different location (forearm, other side of chest). Dr. Gedaly told us this morning that Mark may get to go home on Monday. Monday is Mark's birthday-so we're praying that we can spend it at home with Mark Thomas. Please keep praying for Mark!!!

Sunday, July 5, 2009

Still praying for a miracle!

As I looked at the blog this evening, I couldn't believe that so much time has passed since my last entry! Please forgive me-I know that several of you read our blog often. Here is an update of what has happened over the past week or so:

Mark was discharged from the hospital late in the afternoon on June 25th. He was dialyzed three times as an inpatient at UK. The Transplant Team decided he needed to continue with dialysis and arranged for him to receive dialysis at a dialysis clinic in Harlan. After spending that weekend at home, we reported to the dialysis clinic on Monday afternoon. We were impressed with the clinic in Harlan. The dietitian and social worker were very professional and knowledgeable. The dietitian spent a great deal of time on Monday educating us of the importance of obeying a restricted diet. As a hemodialysis patient, you must limit foods that contain a lot of "wastes" as it makes it more difficult for dialysis to cleanse your blood if your body is full of not only the waste your kidneys can't filter, but also what you are adding to it through your diet. This means we must limit sodium, potassium, and phosphorus. It is difficult to balance all of the restrictions. Foods that are low in one thing are high in others. I've spent a lot of time finding websites and cook books online to help.

On Wednesday, July 1st, we met with a general surgeon in Lexington who works with Mark's Nephrologist regarding peritoneal dialysis. He reviewed Mark's medical history and examined his abdomen to see if he is a candidate for peritoneal dialysis. Remember that this type of dialysis requires a catheter to be placed about an inch from the naval. It is more convenient than hemodialysis in that you can do it at home and do not have to obey as strict of a diet. The Surgeon said that Mark should be a candidate for peritoneal dialysis, but that it is too soon to schedule the surgery to place the catheter. He wants to give Mark's body more time to heal from the transplant and scheduled to see us at the end of the month. We suspected this is what he would say so we were not surprised. Mark was actually relieved to put off another surgery for a while!

On July 2nd, we went back to the Transplant clinic for Mark's weekly blood work and appointment with the Team. His creatinine had dropped back down to 5.0. This is a result of being on dialysis. Although Mark is retaining fluid around the transplanted kidney, his incision looked much better than it did when we were discharged. Before leaving the hospital on June 25th, Mark's incision had reopened due to his vomitting. The Team was concerned about the wound being infected. They restitched his incision and placed him on antibiotics. We were very happy to hear that his incision did not seem infected. If it had looked worse, the Team was considering another surgery. We are very thankful to avoid this!

We also learned that the Team had received the pathology report from biopsy sample they sent to UCLA. Unfortunately, the results indicated that Mark does not have antiendothelial antibodies. The presence of these rare antibodies are not necessarily a good thing, but they would explain why Mark's body is reacting the way it is to transplanted organs. Antiendothelial antibodies are not detected with the HLA crossmatch that is used during the living donor evaluation. It is also not detected in the anticoagulation evaluation Hematologists complete. When someone has antiendothelial antibodies, their body's immune system is almost "preloaded" in the sense that their immune system aggressively attacks any foreign body (i.e. a transplanted organ). The condition is rare, but the medical literature has documented the use of treatments like plasmapheresis and use of IGIV before a transplant to cleanse the body of the antibodies that seem to trigger the rejection. Remember that Mark received these treatments after the transplant in June. The Transplant Team expressed to us on several occasions that they really thought that Mark perhaps did have antiendothelial antibodies. They had talked about sending us to the experts in the field on antiendothelial antibodies. The fact that Mark doesn't have these antibodies is really bad news. It means that the Transplant Team really does not have any explanation for what has happened with either transplant. In addition, unless the Team comes up with some other theory for why Mark's body is rejecting kidneys so aggressively so quickly and not responding to treatments that typically help, they will likely not consider him a candidate for another transplant in the future. This would mean Mark would spend the rest of his life on dialysis. As you might imagine, this has been difficult news to hear for all of us. At this point, the Transplant Team has decided to repeat some of the testing in hopes of learning more. They will continue to monitor Mark's blood work. I titled our post "Still praying for a miracle" because I'm continuing to pray that Justin's kidney will start working. This would not only be a miracle, but it would be an answer to all of our problems.

Mark is continuing to battle constant nausea and digestive discomfort. This is often a side effect of antirejection medication. In addition, dialysis can cause nausea. Please continue to pray for Mark. He is going to see a Urologist on Wednesday to remove the stent that is placed between the transplanted ureter and his bladder. The ureter is the structure that connects the kidney and bladder. It is an outpatient procedure that only takes a few minutes, but is very uncomfortable. I'll post more information as we learn more. We don't see the Transplant Team this week. However, we will see them next week.

Tuesday, June 23, 2009

Beginning Dialysis

This morning a deep line was placed in Mark's neck so that hemodialysis can begin. The procedure to place the line was uncomfortable for Mark. They numbed the area with a topical anesthetic, but did not want to give him any type of sedation due to his past history with anesthesia. The deep line looks a little different than the one he had last week. This one is "tunneled" so that there is less chance of infection and so that it can be in place longer. Mark started dialysis this afternoon. At this point, the Transplant Team is planning on letting Mark receive dialysis today, tomorrow, and Thursday. They will continue to monitor Mark's blood/creatinine levels and will decide after Thursday if he will need to continue with dialysis. If the Transplant Team decides that he will need to stay on dialysis for an extended period of time, they will place an access port in his body. For hemodialysis, the physicians connect an artery and vein in the forearm. For peritoneal dialysis, a catheter is placed in the abdomen. Mark's preference is peritoneal dialysis. Placing the catheter for peritoneal dialysis requires surgery. As you might expect, we're praying that the dialysis Mark receives this week will help Justin's kidney to start working so that Mark can avoid another surgery!

As I mentioned in an earlier post, the Transplant Team sent a sample from the kidney biopsy to a Pathologist in California. The Transplant Team has consulted with several other transplant surgeons in other hospitals. They are thinking that Mark may have antiendothelial antibodies that are triggering his rejection to transplanted kidneys. This is a very rare condition that makes transplantation difficult. The Team is still awaiting the results. I will post the results as soon as we know more.

Please pray for God's peace for our family. Please pray specifically for both of our mothers-Rhonda and Tish- as this situation has been extremely difficult for both of them.

Monday, June 22, 2009


Mark is being readmitted to the hospital today. He had an appointment this morning at the Transplant Clinic. Unfortunately, his creatinine levels have jumped pretty significantly. They were 5.7 when we left the hospital last Thursday and are now up to 7.3. This means that he is going to start dialysis. We are waiting for the admission paperwork to be completed. Then, we'll probably be back up on the 8th floor. One of the physicians will place a "deep line" in Mark's neck. This will serve as a temporary means for the dialysis. I think that they will place a more permanent port later this week. There are 2 types of dialysis: hemodialysis that uses the blood and peritoneal that utilizes the peritoneal cavity. Both require an access "port" to allow for the fluid to exit the body. However, it takes a few weeks after placement for it to be used. In the mean time, the deep line will be used. Mark wants to go on peritoneal dialysis. This type of dialysis can be completed at home. I'm unsure if the placement of the peritoneal catheter requires general or local anesthesia. I'll post more information as we find out what will happen. I'm thinking Mark will be in the hospital until the weekend. Please keep praying for Mark!!!

Thursday, June 18, 2009

Heading home until Monday!

The scan of the transplanted kidney indicated that there is still blood flow. The perfusion is poor, but the kidney is receiving some blood. Despite the blood flow and use of anti rejection medications, Mark's blood work is continuing to show that the transplanted kidney is not working as well as we had hoped. His creatinine levels are back up to where they were before the transplant-around 5.0. Although the kidney is not functioning perfectly, we are thankful that there is still blood flow. We're happy to be going home with Justin's kidney as this means that there is still a small chance that it may one day recover. It will be a "waiting game" for quite a while as the Transplant Team will continue to monitor Mark to decide if the use of anti rejection medications and other treatments (which carry their own risks) are really helping and if continued use of the medications is worth the risk involved. The Team will also monitor Mark to determine if and when he'll need to go on dialysis. So, at this point, we're heading home until Monday.

The Transplant Team has sent Mark's kidney biopsy and blood work to several other Transplant Clinics in hopes of learning what seems to be going wrong. Please pray that some type of answer is found. If this transplant is deemed unsuccessful and no type of conclusion is found, Mark may no longer be a candidate for transplantation. This would mean life on dialysis.

Mark's issues with digestion are getting better. He is no where near feeling "normal" or ready to eat three meals a day, but things are improving slowly. Mark is feeling weak. He's lost about 25 pounds. His spirits are low as well. We're hoping that he can regain his strength as he is able to eat more and rest more comfortably at home.

Please don't stop praying!

Wednesday, June 17, 2009

Update on Mark

I'm happy to report that Mark has only thrown up two times since this morning! I'm keeping my fingers crossed that he will have a better, more restful night tonight. His bowels seem to no longer be as obstructed as they were initially. However, he is still cramping and in pain. He was able to eat a few bites of chicken noodle soup today. In addition, he was able to lay still long enough for the renal scan this afternoon. We'll find out the results in the morning. We're praying that the kidney is still perfused. If so, we may go home soon! Mark would be monitored at the Transplant Clinic two to three times weekly and would continue with the anti rejection medications in hopes that the kidney will start working. If the scan shows that the kidney is not perfused, the Team will most likely remove it. This would mean another surgery which would make the issues with Mark's bowels even more difficult as the use of anesthesia slows down the digestive system. Thanks for all the prayers-we've really needed them. We'll update the blog as soon as we learn more in the morning.

Tuesday, June 16, 2009

More rough nights

Mark is still in a great deal of discomfort. He has been vomiting and unable to drink or eat since Saturday. As you might imagine, he can't rest and is really weak at this point. The evaluation of Mark's kidneys is kind of on hold until everything with his bowels are resolved. Please continue praying for Mark.

Sunday, June 14, 2009

Rough weekend

Mark has had an extremely rough weekend. He has been vomiting since Saturday morning. They think his bowels may be obstructed. Please pray for Mark as he is in a great deal of pain and discomfort. He did not sleep last night. The nurses' attempts to help his bowels move have been very uncomfortable and unsuccessful. If you are planning on visiting, please call our cell phone first. We do not mean to be rude, but Mark is in a very tough place right now and has not felt like any company. The Team had planned on re-scanning Mark's kidneys tomorrow morning. But, I'm thinking they will postpone this until the other issues are resolved. Please continue to pray for Mark.

Saturday, June 13, 2009

Praying and Waiting

Not much has changed since our last blog on Thursday. Mark received plasmapheresis yesterday evening. He also received IVIG and some other anti-rejection medications through his IV. His creatinine levels are essentially the same. Yesterday, it was up to 4.2. Today, it is 4.0. The Transplant Team is thinking that Mark's kidney function may have reached a plateau at around the 3.9 to 4.0 point. So, they are thinking of discontinuing the plasmapheresis as it seems to not be lowering his levels as they had hoped. We are under the impression that Mark will will remain in the hospital at least until Monday or Tuesday. The Team will monitor his kidney function without the plasmapheresis. I think they are going to do another scan of his kidney Monday morning. As long as there is blood flow into the transplanted kidney, they will not remove the kidney. I would imagine if his levels stay around the same point and there is blood flow to the kidney, Mark will be discharged to home. He would then be monitored until the point where he will need dialysis.

We have heard of some patients who have gone home and then experienced an increase in kidney function. Sometimes it takes a while for the medications to kick in and sometimes dialysis can "jump start" a kidney. So, there is some hope. The amount of hope seems to diminish each day that Mark's creatinine levels are not dropping, but there is still hope. In March, there wasn't hope for the transplanted kidney to work. So, we are thankful for a possibility of it working, despite how small that possibility may be. We're also thankful that his levels are not increasing at an alarming rate.

As you might imagine, this is an extremely difficult situation. We are trying to stay positive, but at the same time we're trying to prepare ourselves for any outcome. Some moments are easier than others. We appreciate all of your prayers and ask for continued prayer for God's healing and peace.

Thursday, June 11, 2009

Praying for a miracle

Here is the latest on Mark and Justin:

1. The scan that was completed on the transplanted kidney showed perfusion-poor perfusion-but perfusion none the less. This means that blood is flowing into the transplanted kidney, but it is questionable how well the blood is circulating throughout the kidney. The scan also indicated a slight improvement in kidney function compared to the scan that was completed after the surgery. Although the scan showed improvement, it did not indicate a substantial amount of improvement. In other words, the kidney is a little better than it was initially, but is still not working as well as the Transplant Team had hoped.

2. Mark's creatinine level has not decreased since our last blog. It has stayed essentially the same over the past three days. This is "neutral" news in the sense that we had wanted to see a continual decrease of creatinine, but we are glad that the creatinine isn't increasing. A continued decrease of creatinine would indicate better kidney function and would mean that the treatments were successful in combating the rejection. A significant increase would be a bad thing as it would indicate that the kidney function was worsening.

3. Mark is continuing to receive plasmapheresis and anti-rejection medications (IVIG, thymoglobin). Plasmapheresis is a treatment in which the plasma or watery part of Mark's blood is extracted and replaced with a cleansed protein which is then mixed back in Mark's blood and pumped back into his body. As I understand it, the thought process behind this treatment is that the type of rejection that Mark's body is demonstrating involves antibodies; antibodies are carried in the plasma of blood; extracting the plasma through plasmapheresis would remove the antibodies that are triggering the rejection of the graft (transplanted kidney). Plasmapheresis reminds you of dialysis in the sense that it requires a special machine that literally pumps out the patients blood, cleanses it, and then pumps it back in the patient's body. Mark is receiving plasmapheresis every other day. On the days when he doesn't receive plasmapheresis, he is taking strong anti-rejection medications. One of which is IVIG. IVIG kind of has the opposite effect of plasmapheresis as its purpose is to neutralize the antibodies that Mark's blood is carrying. So, plasmapheresis cannot be completed on the same day that Mark takes IVIG because it would remove the IVIG from his bloodstream. The combination of IVIG and plasmaphereis is common practice for treating humoral rejection. However, as noted in a previous blog, Mark has hyperacute humoral rejection. It happened very quickly. Usually, humoral rejection happens later. So, it is questionable whether or not this will work.

4. Justin is at home and doing well. He has been calling to check on Mark each day. He drove his car today-so he must be feeling well!

5. At this point, we are playing a waiting game. No one really knows what to expect. It is a matter of waiting to see if the treatments will be successful in saving the transplanted kidney. All we know right now is that the treatments will continue throughout the weekend. The Transplant Team will make a decision on Sunday or Monday about whether or not to continue the treatments or to discharge Mark.

We are continuing to pray for a miracle. At this point, it seems that it would truly be a miracle if the transplanted kidney started working as it should. We know that God is completely capable of making our dream of a successful transplant a reality. We just don't know if it is His will to do so. Please pray for us as we will need His strength to accept any outcome.

Monday, June 8, 2009

Team reports slight improvement as Baby Kate arrives!!!

This morning we learned that Mark's creatinine has decreased! Although this is considered to be a slight improvevement, we are happy to hear some good news. We are trying to not get too excited about this news as the transplant team has warned us to stay "cautiously hopeful." Creatinine is a chemical found in the blood that is used to predict kidney function. Mark's creatinine was around 5.0 when we arrived for surgery last week. It dropped to around 4.9 and 4.7 this weekend. Typically, successful transplants cause creatinine levels to drop significantly (several points). So, the decrease of .1 to .3 was not a good sign. This morning, we found out that Mark's creatinine is now at 3.9. Although this isn't as much of a decrease as the Transplant Team would like, it is at least a step in the right direction. This means that the treatments and medications may be helping to combat the rejection. The transplant team is planning on having Mark complete at least 5 more plasmapheresis treatments. They are anticipating that he will be hospitalized until at least Saturday. However, they are completing a new scan of the transplanted kidney in the morning. We are praying that the scan will continue to show good blood flow. If there is good blood flow, we still have hope for saving the kidney.

In the midst of all of this, Courtney and Greg's baby girl decided to bless us with her arrival! Kate Mallory Drury was born at 3:13 this morning. She weighed 8 lbs and 5 oz and is 20.5 inches in length. Kate is absolutely beautiful! She has a head full of black hair and has Courtney's full lips! Sorry Greg-Baby Kate looks like her Mommy!!! I was so happy to be there for Kate's delivery. Courtney and Greg were on their way home from Lexington when Courtney started having some contractions. Although Courtney objected, Greg made her go to the hospital in Corbin since they were driving through. It is a good thing he did, because she was in labor! Mom, Dad, Josh, Aunt Sheila, and I headed down to Corbin soon after. Courtney ended up having a cesarean section due to fluctuations in Kate's heart rate. When I left Corbin this morning, Courtney was very fatigued and in some discomfort. So, please add her to your prayers as well.

Friday, June 5, 2009

A Request for Continued Prayer

We're getting ready to go down for a treatment. Here is an update about what has happened over the past 24 hours:

1. The ultrasound of the transplanted kidney that they completed last night after the surgery was not favorable. The Surgeon completed a second surgery around 1:00 am. He reopened the incisions to double check that the kidney was "hooked in" correctly. Everything appeared to be connected correctly, but blood flow was still a problem.

2. Mark spent the night in ICU. They monitored his urine and blood throughout the night. His urine output is good. Analysis showed his creatinine has dropped-but not as much as expected for a successful transplant.

3. They sent Mark to nuclear medicine for a scan using a contrast this morning. We just received the results about an hour ago. The results show that the kidney is perfused. In other words, blood is flowing into the main arteries of the transplanted kidney. However, they are unsure how well blood is circulating to the smaller arteries. Please remember that this is slightly more positive than the last transplant. In March, each scan they did of the kidney showed no perfusion.

4. They did another biopsy of the transplanted kidney this afternoon. Results are indicating that this may be a case of humoral/antibody mediated rejection. From what I can tell from talking to the Transplant team, there are different types of rejection. Antibody mediated rejection is very difficult to predict and is also difficult to treat. The antibodies that signal an immune response are involved with this type of rejection. The anti rejection medications commonly used after transplants don't always help. What seems to be even more confusing to the Transplant Team is that antibody mediated rejection usually doesn't occur so quickly after transplantation. There are medications that have helped other patients, but the "time frame" was different. These patients appeared to have a successful transplant initially and then later had difficulty. Mark is starting out with difficulty. The Transplant Team is giving Mark the medications that have worked in the past, but they are unsure if it will be effective.

5. The Nephrologist just placed another central line Mark's his neck. We are waiting to go down for a type of treatment that cleanses the antibodies from Mark's blood.

In summary, the prognosis isn't exactly favorable. The Team isn't that hopeful that this will work. However, we have more hope than we did last time. PLEASE CONTINUE TO PRAY!!!!!!!!!!!!!!! They are giving us a window of one to two days to determine if this will work.

Please remember to lift up Justin and his family. His mom reports that he is nauseous and hasn't felt like eating. He is spending most of his time sleeping.

Thursday, June 4, 2009

Surgery is complete

All seems to have gone well with the removal of Justin's kidney. He has been recovering in his room now for several hours. His family reports that his pain is pretty well controlled. He has had several visitors and appears to be doing well.

Mark's surgery lasted longer than we had anticipated. We got to see him about 5 minutes ago. The Surgeon is hopeful that all went well. After Justin's kidney was placed in Mark's body, there appeared to be difficulty finding a position for the new kidney to allow for optimal blood flow. The Surgeon remains hopeful. However, time will tell. They are keeping Mark in ICU tonight so that they can continually monitor his blood and urine output. They completed an ultrasound of the transplanted kidney and we are awaiting the results now. Please pray that the blood is flowing as it should through the new kidney as this will determine if the transplant will be successful.

Surgery Update: Justin is in the Prep Room/Mark is waiting for blood work results

We are asking that everyone lift Justin and his family up in prayer as we just learned he is in the prep room. I am praying that God will give them peace and that He will wrap his loving arms around each of them. Although I can empathize with Justin, I cannot imagine how Rhonda and Jack must feel knowing that their son is getting ready for surgery. We've spoken to Justin and Rhonda on the phone a few times this morning. They never fail to amaze us and Justin seems to remain calm and eager for the surgery despite the stress of the situation.

We have spoken to several of Mark's doctors this morning (Nephrology, Hematology, General Surgeon, Anesthesiology, Transplant Surgeon). We spoke with Dr. Gedaly-the Transplant Surgeon-around 8:00 this morning. Dr. Gedaly did not perform the transplant in March. However, we know Dr. Gedaly as he was the Surgeon we met when we initially visited the Transplant Clinic. We feel really comfortable with Dr. Gedaly. He explained his plans for the surgery and basically said that he wanted to err on the side of caution throughout the entire surgery. Thus, he ordered a consult with Hematology. The Hematologist who came this morning was the same doctor who saw me for my follow up appointment a few weeks ago. So, he was familiar with our case. He said that the Transplant Team had done a pretty complete work up on Mark's blood work after the transplant in March. All of the results of the testing indicated that Mark does not have a blood clotting disorder. He did order 2 additional tests to add to the information. The team came and took a blood sample from Mark about 20 minutes ago. We are presently waiting for the results of this test. If all results are favorable, the surgery should be completed around 1:30.

I will try my best to update as much as possible. Thanks so much for all of your prayers. Please continue to pray for Mark!!!

Wednesday, June 3, 2009

Checked in and waiting

After a long day, we are finally checked in room 840. We have spoken with several of Mark's doctors and actually feel a little better about the surgery than we did a few days ago. Tomorrow morning, Mark is being seen by a Hematologist who is going to double check the results of Mark's blood work to make sure that he doesn't have an issue with blood clotting. Unlike the last surgery, we have been assured that we will get to speak with the Transplant Surgeon before the surgery begins. We have a few questions we would like to ask. We are praying that we will have a peaceful feeling after speaking with the Surgeon. Please continue to pray for Mark, Justin, and the White Family. I am sure that Justin is starting to feel a little anxious at this point!

Wednesday, May 27, 2009

One week away from Transplant #2!!!

Mark's second transplant has been tentatively scheduled for June 4th!!! It is hard to believe that a week from tomorrow we will be back at UK for another transplant! We went to the Transplant Clinic today for the final crossmatch between Mark and Justin's blood. Justin met with Dr. Strup-the Urologist who will be removing his kidney. Hopefully, we will find out the results of the final crossmatch by the end of the week. If the crossmatch is "negative," we should receive our official orders from the OR.

I apologize for not updating the blog as frequently as I did for the first transplant. Justin has visited the Transplant Clinic several times for testing involved in the living donor evaluation process. We've tried to avoid doing anything that would make Justin feel pressured to make this decision. Thus, we didn't ask for specific information that may make him feel uncomfortable or give him the feeling that we don't respect his privacy. In addition, to be very honest, Mark and I are both pretty stressed right now. We've tried to avoid thinking about the transplant as much as possible in an effort to minimize stress and anxiety. This is an impossible task of course, but cutting back on the blogs at least helped somewhat.

As many of you know, the transplant was originally supposed to occur in late June or early July. However, one of the surgeons was unavailable during the last week of June. Thus, we were moved to June 4th. This is actually a huge blessing. When Mark and I visited his Nephrologist last Monday, he told us that Mark was a "heartbeat away from dialysis." He told us that if the transplant was any later than June 4th, Mark would need to go on dialysis.

Please continue praying for our family. We will need your prayers now more than ever. I think we all are more anxious and worried about this transplant than we ever were back in March.

Sunday, April 19, 2009

Starting the process for Transplant #2

As many of you are aware, the Transplant Team is starting the process for another transplant. Several weeks ago, Mark and I visited the Transplant Team for his follow-up appointment. We spent a great deal of time talking with the Surgeon regarding what went wrong during the first transplant and what the team will do differently if another transplant is conducted. Many of our family and friends have asked the same types of questions about our situation and follow-up visit with the Transplant Team. So, in an effort to make this information easier to read, I've listed the information in a question and answer format. Enjoy!

What happened to my kidney after it was removed from Mark's body?
It was sent to pathology for testing. The testing was completed to determine why the transplant failed.

What were the results of the testing? Did the testing indicate what happened?
Results from pathology regarding my kidney were somewhat inconclusive in the sense that they could not conclude if the failed transplant was a true case of rejection or if some other factor caused the transplant to be unsuccessful. A great deal of the blood vessels in the kidney appeared clotted. The physicians don't know if the clotting issue occurred as a result of 1. Mark's body clotting in response to my kidney; 2. Mark having some rare genetic type of clotting disorder (he has family history of this); 3. My kidney might have had a clot that was unable to be detected during the evaluation process or removed during the part of the transplant where they "cleanse" the kidney after removing it from the donor; or 4. a combination of these factors.

What will the Transplant Team do differently during the next transplant?
Regardless of what caused the clotting issue, the Transplant Team is going to use anti coagulation medication (i.e. "blood thinners") before and after the transplant. This is very risky though-I don't think any doctor would choose for a patient to be on blood thinners during a major surgery.

Why didn't the physicians use anti coagulation medication during the first transplant?
The risk involved with the blood thinning medication is the reason why it wasn't used during the first transplant. The team had no reason to believe an issue with clotting existed. Now that they know about the clotting issue, I guess they are willing to accept the risk.

Is Mark on the "waiting list" for a kidney from a cadaver?
Yes, Mark has been placed on the universal network for organ sharing list. As I mentioned in a post from several months ago, we were under the impression that he was already on the list. Apparently, when I was completing the testing to become the donor, Mark was not on the waiting list. However, we received an official letter a few weeks ago stating he was on the list. Hypothetically, we could get a phone call at any time telling us that Mark has been selected as the recipient from the waiting list. However, the average wait time on the list is around 15 months. We are praying for another transplant sometime soon-before Mark is in need of dialysis.

Who is the next potential living donor?
If you recall, Mark has had about 14 people call the Transplant Clinic and offer to become his donor. Back in December, the top three donors completed the blood crossmatch test. All three (Mark's Aunt Carma, Justin White, and me) passed the test. When the transplant with my kidney was deemed unsuccessful, the Transplant Team wanted to explore completing another living donor transplant. When Mark was still hospitalized from the first transplant, Justin, the son of one of Mark's coworkers, called and came to visit him at UK to let him know he was still willing to give his kidney. So, the living donor evaluation process has started with Justin. As I've noted in previous posts, Justin's willingness to help Mark is truly amazing. It honestly blows my mind. Justin is a Freshman in college. How many 18 year olds are willing to become a living kidney donor-especially to someone who is not considered a "close friend or family member"? Mark and I have both told Justin that he can change his mind at any time and we would not blame him or be upset. We would never want him to feel pressured to make this decision. Each time we speak with Justin, he seems determined to help. He told me not long ago that he "really wanted to do this." Just thinking about Justin's willingness to help brings me to tears. The Lord truly does work in mysterious ways. Even if something happens where it is not in God's plan for Justin to become Mark's donor, I can honestly say that we have already been blessed by knowing Justin.

When will the next transplant take place?
The transplant is tentatively scheduled for the last Wednesday in June or first Wednesday in July. Please understand that this is only an approximation. The Transplant Team feels it is best if Mark's body has time to rid itself of the anti-rejection medication that was used during the first transplant as this type of medication weakens the immune system and may make another surgery difficult.

What will happen between now and the next transplant?
Mark is being followed by the Nephrology practice that has cared for him since he was first diagnosed with IGA. These physicians will monitor his kidney function and determine if and when he will need dialysis. Justin will continue with the living donor evaluation process. A second crossmatch test with Justin and Mark's blood has been scheduled for May 7th. I will see a Hematologist at UK on May 6th who will do some analysis of my blood to make sure I don't have a blood clotting disorder.

Tuesday, March 24, 2009

Our Hope Endures

As most of you already know, our transplant was unsuccessful. This was the second time in the history of the transplant program at UK that a renal transplant simply didn't work. Although results of testing are not complete at present, it appears that there were unforeseen and unexplainable issues with blood flow and clotting. So, it wasn't that Mark's body rejected my kidney or that a mistake was made in the process of transplantation. The kidney never started functioning appropriately and as a result was removed from Mark's body within five days of being transplanted.

I cannot begin to express all of the pain (physically and emotionally) that our family has experienced. I went from believing that my husband's health would be restored to seeing him on a ventilator to watching him being wheeled back into surgery to have my "gift of life" removed all in a matter of days. Although words can't express what has happened, I can tell you that we have not given up. We're not giving up on another transplant, on a healthy outcome for Mark, on a successful ending, and most importantly...we're not giving up on our Faith. Although it has taken me quite a while to reach this point, I believe that something good will result from this situation even if we never know what it may be. I remain grounded in my Faith and firmly believe that God had a purpose in mind for why things have happened the way they have. This has been the most difficult time in our lives, but our Hope endures.

Mark and I would like to thank all of you for the thoughts, prayers, cards, gifts, food, and other acts of love that have been showered upon our family. We feel blessed to have such a thoughtful church family and community. We have undoubtedly relied upon prayers and God's strength during these difficult days. We've also found encouragement in the following songs of praise: Mercy Me's "Bring the Rain" and Natalie Grant's "Our Hope Endures" . We will post more information relative to results of testing and plans for the future as we learn more from the transplant team.

Friday, March 6, 2009

Request for Continued Prayer

Kellie has requested that I update the blog on her behalf and ask for your continued prayer. Initially, the outcome of the surgery seemed successful. Although Kellie and Mark were in a great deal of pain following the surgery, Mark's body was producing urine through Kellie's kidney, his hypertension was decreased without medicine, and he reported feeling much better. He even walked down to Kellie's room for a snuggle this morning. However, during a routine scan of the donated kidney function, results indicated an abnormality with blood flow in the new kidney. Thus he had to go back into surgery to allow the surgeons to view the transplanted kidney to determine the status of the kidney. The kidney appears healthy, but there continues to be concern with blood flow. He is presently in the recovery room. We are asking now more than ever for your prayer as we are fearful his body will reject Kellie's kidney.


Thursday, March 5, 2009

And we're off!!!

It has been a somewhat rough start (i.e. no room available when we arrived, confusion on the time of surgery, confusion in whether or not Mark should be a participant in a research study of a new anti-rejection medication, etc). But, in a few hours this will all be behind us! I will report to the OR at 11:45. Mark will then go back about 45 minutes later. The surgery will officially take place around 1:15. The surgery will last several hours-we think up to 4 hours. At the present, Mark is in Room Number 837. We think he will stay in this room after the surgery. We don't know my room number, but will post it as soon as we know. We are both pretty nervous right now and anxious for the entire ordeal to be over. Please continue to lift us up in prayer as we are relying on the Lord to help us through this difficult time!

Monday, March 2, 2009

Orders from OR received!

Well I am not exactly excited about Harlan County Schools having yet another snow day today, but being home did allow me to receive all of the phone calls from UK today and to spend some extra time with Mark Thomas! We are scheduled to be at the hospital on Wednesday at 12:00. Mark will be admitted so that the Transplant Team can do some final testing to make sure all of his levels (i.e. potassium, blood pressure, etc.) are as low as possible. He may have to complete an EKG as well. I will not report to the hospital until Thursday morning. I have been given instructions of how to prepare for the big day. I can't eat at all on Wednesday and have to use a special kind of soap when showering on Wednesday and Thursday morning. If all goes well, I will be discharged on Saturday or Sunday. Mark will stay in the hospital for seven to ten days depending upon how his body responds to the new kidney. Much to my disappointment, the nurse from UK did not have the report about our final HLA crossmatch when she called this morning. However, she assured me that if we had received bad news (positive crossmatch), she would have already known and would have been calling frantically to let us know what had happened. I really wish I would have heard a definite answer, but I guess this will have to do for now! We will be leaving Harlan on Wednesday morning. We'll be checking our answering machine, but the best way to reach us after Tuesday night will be through our cell phone or email.

At this point, we are in "crunch" mode trying to pack all of our things and make arrangements for Mark Thomas. We have decided to take him with us on Wednesday. Initially, we were going to leave him with Rachel, our babysitter, and have my sister or brother spend nights/evenings with him until I was released from the hospital. Although this would have preserved his day time routine, his night time routine would be drastically different (he has only spent the night away from us on about five occasions and they were always with my mom or Mark's mom). Also, we are a little uneasy with him being so far away from us. So, Mark made the decision for him to come along. Of course, I didn't object. The difficult part now is planning who will take care of him and what they will do with him. At this point, my sister and brother-in-law will be caring for Mark Thomas on the day of the surgery. He is going to have a blast with them (they have plans to take him to Chuckie Cheese or Lexington Athletic Club's Kids Place)! After the surgery, my parents and Mark's parents will take turns caring for him. My brother and Mark's sister and her family will also be in Lexington until Sunday to help with Mark Thomas. I'm sure everyone will keep him occupied! I'm hesitant to let him visit the hospital-it is really germy and I'm afraid he may get upset when Mark and I can't leave with him. But, I can't promise that he won't make at least one trip to see his "DaDa" over the several days Mark will be recovering.

Please continue to pray for us and please forgive us if we haven't returned your call or email. It is a wonderful problem to have when so many people are calling that you can't return all the calls in a timely matter!

Saturday, February 28, 2009

Final visit to Transplant Clinic before surgery

Mark and I visited the Transplant Clinic this week for a final appointment before surgery. I completed a split-function renal scan, blood work, and met the Urologist who will be removing my kidney. The split-function renal scan, an exam in which a small amount of radioactive material is injected through an IV and watched as it travels through the body, was completed to give the Transplant Team insight into which of my kidneys has the best filtration rate. This information is used to determine which kidney will be donated to Mark. While at the clinic, we also completed our final "HLA crossmatch test." This is the blood test we completed back in December that entails mixing our blood to make sure that Mark's body does not respond adversely to my blood. A "positive HLA crossmatch" indicates that Mark's body formed antibodies in response to my blood. Forming antibodies is a signal of an immune response and can indicate his body may reject my kidney. If you remember, back in December, our blood testing indicated a "negative crossmatch." The Transplant Team repeats the crossmatch within 7 days of the transplant as a precaution. As I mentioned above, we also met the Urologist who will be completing my surgery. Although we had to wait over 3 hours to see him, Dr. Strup was well worth the wait. He had a great bedside manner and really took the time to educate us both on exactly what would happen. He showed us where my incisions would be made and gave me a choice of two sites for the incisions (a vertical incision starting at the naval and going down about 3 inches or a horizontal incision lower than the "belt line" that is about 5 to 6 inches in length). After all of this, I signed the consent form for donation.

We spoke with the Transplant Team yesterday. The results of the Split-function scan were complete. My left kidney will be the kidney donated to Mark. The results of the crossmatch test was not ready. We should hear back from the Nurse on Monday with the results and should also receive our orders from the OR. We will post more information as soon as we know all of the exact details.

While it is really unlikely for a donor to pass the HLA crossmatch initially and then fail it just before the transplant, I am still really nervous about the test. I am trying to remind myself to trust in God as I know He is continuing to watch over us. Please continue to pray for us!

Wednesday, February 18, 2009

Two weeks and counting!!!

It is hard to believe that (if all goes well) our transplant will take place two weeks from tomorrow. As I reflect upon this entire situation, I continue to remain in awe of how God has worked in our lives. Looking back, I can see how He has guided us and provided for us in ways that we did not realize at the time. The way in which Mark discovered he had a kidney disease is a miracle in and of itself. The Lord was working on that day ten years ago when the nurse in charge of Mark's care during the removal of an ingrown toenail just happened to comment, "Your blood pressure sure is high." The Lord continued working as Mark mentioned the nurse's comment regarding his hypertension to the nurse at Dr. Weiler's clinic when delivering a package. This led to his visit with Dr. Weiler that resulted in a referral to a Nephrologist. And here we are today getting ready for the transplant and God hasn't stopped working! It still brings me to tears when I think of how God moved so many of you to offer your kidney to Mark. The nurse coordinator at UK mentioned to us several months ago that she had never received so many phone calls from individuals wishing to donate to a patient in such a short period of time. She had commented, "Mark must be a special person." Of course, I'll agree with her assertion! But I'd also add that our God is an amazing God who provides for His children. We have been able to lean on Him and trust in His plan for our lives. God knew what he was doing when he allowed me to meet an incredible woman who had given her kidney to her brother who has IGA Nephropathy about two years ago. I met this donor at UK, but not in the transplant clinic. She was actually the Radiologist Technician who conducted my CAT scan several weeks ago. God allowed our paths to cross and she provided me with a wealth of information. My conversation with her has made it even easier to stay calm and focus on the positives in the situation. In addition to these three things, God has done so much more! I may share others later. We have been blessed beyond measure. In my opinion, this entire situation serves as an undeniable testament to God's mercy, power, and love!

Thursday, February 12, 2009

The transplant has been scheduled!!!!!!!!

I am at my state association's conference and received the phone call that is the answer to months and months of prayer! Mark's transplant has been tentatively scheduled for March 5th!!!!!!!!! Please understand that this is pending the completion of the one remaining test of kidney function and approval from the Rheumatologist. As we've mentioned in prior posts, I am scheduled to see the Rheumatologist a week from tomorrow-on 2/20/2009. I will then see the Urologist and complete the final test on the Wednesday- 2/25/2009. If all goes well, the transplant will then occur the following Thursday-3/5/2009. While this is unbelievably wonderful news, please continue praying for us. While I am celebrating the news, Mark is starting to feel very anxious. He is fearful of rejection and his response to the medications used after transplantation, while also being worried about any pain or discomfort I may experience from donating. So...this post is a prayer request, but is mainly a huge "praise" report as we have continued to see God work in this situation!!!!

"I will praise you O Lord with all my heart. I will tell of all Your wonders. I will be glad and rejoice in You. I will sing praise to Your name O Most High."
Psalm 9:1-2

"I will lie down and sleep in peace for You alone O Lord make me dwell in safety."
Psalm 4:8

Sunday, February 8, 2009

Persistence pays off!

Well after all the confusion, I got an appointment with rheumatology last week! Apparently the weather caused some cancellations. Dad, Courtney, and I braved the weather and traveled to Lexington last Thursday. The Rheumatologist was incredibly nice and seemed very supportive of me donating my kidney to Mark. She stated that she could not really speculate about the accuracy of my diagnosis of skin-limited lupus from ten years ago. She mentioned several factors that would lead her to believe the diagnosis was inaccurate (e.g. no flare-ups since the original diagnosis; no flare-ups during pregnancy; no indications of lupus at present), but also mentioned several factors that would lead her to believe the diagnosis was accurate (e.g. I seemed to respond to the medication that is used to treat lupus when I took it ten years ago; the fact that I've been cautious when exposed to sunlight does not provide information about how my skin would react to the sun-an adverse reaction is an indication of skin-limited lupus). She said I had no clinical signs of lupus at present. She stated that the Transplant surgeon had really given her an impossible task in the sense that even if I had skin-limited lupus now, she can't predict whether or not I would ever develop systemic lupus. She also mentioned that having skin-limited lupus in the absence of systemic lupus does not rule out patients from becoming a living donor. She ordered additional blood work and an echo cardiogram (she thought she heard a heart murmur). Luckily, she was able to get me in at Gill Heart Institute the same day for the echo cardiogram. I have an appointment with her on 2/20/2009 to go over the results of the blood work and echo cardiogram. I would imagine at that point she will share her final decision with me regarding whether she will "clear" me for donating.

I titled the blog "persistence pays off" because in addition to the great news of completing the initial visit with the Rheumatologist, we received a notification in the mail today that my living donor nurse coordinator had scheduled me with the Urologist for 2/25/2009. This was the appointment we had heard was very hard to secure. So, we are thrilled that we have an appointment with this physician! It is starting to feel that things are once again moving in the right direction!

We are continuing to ask for prayer from everyone. Mark has been really fatigued the past few weeks. He actually missed work today due to fatigue and pain which is really rare. He has an appointment with his Nephrologist on Monday. We will post more information as we learn what lies ahead.

Wednesday, February 4, 2009

No new information...just frustration!!!

Well...we've been waiting for over 3 weeks to find out when my appointment with Rheumatology will be scheduled. I have been emailing the living donor nurse coordinator very often to find out what has been going on with my appointment. UK was closed several days last week due to the ice/snow storm. Yesterday, I decided to call the Rheumatology department at UK in hopes of getting some information about the status of my appointment. What resulted from my phone call was a lot of confusion! The office worker in Rheumatology informed me that I was not in their database as an active referral. As you might imagine, I became very frustrated with the entire situation! My correspondence through email with the nurse had led me to believe that there would soon be a resolution to this matter. Thus, I left the nurse a message asking her to call and clear up the confusion. I also informed her that we were getting frustrated with the situation. It is very difficult to watch your husband's health decline as he becomes more and more fatigued and at the same time think that the transplant clinic is not doing their part in moving the process forward. Mark was also very frustrated with the situation and called the nurse in charge of coordinating his care. He actually left her a message the day before, but she had not returned his call. Mark also informed her of his feelings and told her that we were considering visiting another transplant clinic due to the lack of communication. Within an hour, my nurse coordinator called and let me know that I was entered in the database as "Coldiron-Ellis." She believed that if the Rheumatology office had searched for my name as "Coldiron-Ellis," they would have seen me listed as an active referral. She also assured me that I would hear from Rheumatology by the end of the week when my appointment had been scheduled. The nurse was a little defensive and her tone was not exactly understanding throughout the conversation. As most of you know, I am a "peacemaker." I don't like confrontation or thinking that I've upset someone else. But, at the same time, I refuse to apologize for being concerned about Mark and wanting this entire process to move forward. Everything we've read advocates for early transplantation. As we've stated in previous posts, transplantation before dialysis and from a living donor leads to better outcomes for the patient. So, although this may not be deemed an "emergency situation" by all members of the medical community, it is an emergency in our eyes and any delay is especially troublesome. So, once again, we are asking for prayer: prayer for patience, prayer that we'll hear something soon, prayer that this entire ordeal will come to a happy resolution quickly!

On a more positive note, Mark was officially listed on the Universal Donor List yesterday. This is the one positive thing that resulted from all of our calls. So, hypothetically, at any time, we could get a call that he has been chosen to receive a kidney from a cadeveric donor. The average wait time once placed on the list is 12 to 15 months. Thus, it is not likely that we'll get the phone call before the process involving me donating my kidney is complete, but you never know!!! I am not convinced that I would necessarily want Mark to receive a kidney from a cadaver, but I have to trust that would be God's plan if we got the phone call before the transplant with my kidney is scheduled. As you can see from the picture, Mark Thomas has been enjoying all of the snow days in Harlan. The frustration of yesterday made me especially thankful that he is too young to realize exactly what is happening. He is amazed by the snow and really liked making what I believe is the cutest snowman of all time in our yard!