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!

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!

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

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.

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!