Thursday, January 28, 2010

Surgery is complete

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

Surgery has started

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

Monday, January 25, 2010

Praying, waiting, and planning

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

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

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

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

Thursday, January 21, 2010

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

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

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

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

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

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

Wednesday, January 20, 2010

Report from Cardiothoracic Team

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

Results from TEE

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

Tuesday, January 19, 2010

Urgent Request for Prayer

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

Monday, January 18, 2010

Admitted due to lingering infection

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