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!


Margaret M said...

Thinking and praying for you!

Anonymous said...

love the snow man!!! Give Mark Thomas loves and kisses for us, hope to see you all soon!!!