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!