Monday, September 6, 2010

Extremely frustrated...still waiting for word from for an even longer wait!!!

Well, after several months of thinking that Mark's case was being reviewed by the Transplant Team at Hopkins and that we would hear from Hopkins sometime soon regarding Mark's referral for a third transplant, we learned this week that we will have to continue to be patient and wait as Mark's case has not yet been reviewed by the Transplant Team! As you might imagine, after learning this information, we have been upset, stressed, and angry to say the least! The story behind the referral is long and complicated, but here is what has happened in brief:
  • We were officially referred to Hopkins in late May by UK who sent Mark's records to Hopkins at the time of referral.
  • We received the referral packet in early June and submitted the referral forms within 2 weeks.
  • During the first week of July, we received a voice mail from the Incompatible Kidney Program Coordinator saying we had forgotten to sign one form. We faxed the form the following day.
  • In mid July, we were contacted by our insurance agency who stated that Hopkins is out of network and wanted to make sure we were in agreement to pay out of network charges. We agreed. Insurance agency informed us that evaluation at Hopkins was approved.
  • On August 6th, we received a letter from Hopkins saying that Mark's file was incomplete and that if his file was not made complete within 45 days, his case would be listed as inactive and he would have to start the referral process over. We immediately contacted UK and Mark's Dialysis Nephrologist and were assured all records were being faxed immediately to Hopkins.
  • I began calling the Program Coordinator regularly (i.e. up to three times per week) to ensure Mark's file was complete. Each time I called, I got her voice mail and asked for her to return my call to confirm Mark's file was complete, but never received a returned call.
  • Last Wednesday, I called Hopkins and received a voice mail again. Frustrated and worried about the 45 day deadline approaching, I called a number for patients who had already been transplanted and spoke to a receptionist who provided me with the telephone numbers of three nurses working in the Incompatible Kidney Program. I spoke with one nurse who informed me that she could not believe that this situation had been going on since June and noted that most new referrals are seen at Hopkins in a timely manner. She informed me of what medical records were needed to complete Mark's file.
  • While I was speaking to the nurse, I coincidentally received a voice mail from the Program Coordinator (i.e. the lady I had been calling for several weeks). I immediately returned her call. She informed me that she had not received my messages and that I was fortunate that she had not already changed Mark's status to inactive. I will not elaborate upon the phone call from the Program Coordinator, but will state that she spoke to me in an extremely rude and unprofessional manner as if I was ignorant and unworthy of her time and attention.
  • I phoned UK and was told that Mark's records had already been submitted on two occasions, but would be sent for a third time. I went to Mark's Dialysis Nephrologist's office and requested that records be faxed. I waited for the records to be faxed from the Dialysis Center and heard the Dialysis nurse call Hopkins to confirm that records were received.
  • I emailed the Program Coordinator at Hopkins the following day to inquire about the status of Mark's case. She emailed me on Friday stating that his file remained incomplete and listed several items (including the consent form we faxed in early July) that to my knowledge are already in her possession.
  • I emailed the Program Coordinator stating that all records should be received and outlined the dates and times when records were sent. If I have not heard from her by tomorrow, I am planning on contacting her administrator.
As a result of the situation described above, Mark's case has not been yet been reviewed by Hopkins and absolutely nothing has happened toward a third transplant for nearly 4 months! It is ironic that we have been rushing to the mail box each afternoon prayerfully and anxiously awaiting a response from Hopkins when the physicians at Hopkins are not even aware of Mark's case! The anger and frustration we have felt this week has been indescribable! My Aunt often reminds me that God's timing is perfect...not too early and never too late. I am trying hold to these words and not question what has happened, but it is very difficult! As always, please continue to pray for our family. Please pray for us to have patience and a positive attitude while we continue waiting and while interacting with people who are disrespectful and either dishonest or extremely unorganized. However, more than anything, please pray for the Transplant Team who will hopefully be reviewing Mark's records sometime in the near future!


Anonymous said...

I am sure that you all are frustrated...I hate it when everything is done by fax or leave messages in someone's mailbox..I love speaking to the person in charge.
Will definitely be praying as usual for you all..yes, in God's is hard to be patient..but know He will give you the best answer for Mark.
We love you all!
Jane & Tom Cawood

Anonymous said...

I came across your blog a week ago via the "" blog and sat for hours reading all of the posts from beginning to the last one in July. I have been checking each day for additional updates and found the latest post today. I am so sorry that you, your husband and family are experiencing such frustration.

I lost my brother in June, 2009 due to his need for a second kidney transplant which he never received. Adding to his problems, was the fact that his body did not accept dialysis well.........he could only tolerate it for 8 months. ultimately, a MRSA infection resulted in his being removed from the Paired Donation listing on which he and I were listed as a pair. In May of 2009, a potential match with another pair was denied him due to the MRSA infection.

I only mention my brother's experience to let you know that your experiences, frustrations, fears and hopes are
understood so well by those of us who have traveled that same road. Because of that understanding and empathy, my heart goes out to you and your husband. I felt compelled to send you this message...........just to let you know that you will be in my prayers. God is good and will provide you the strength when you think you cannot deal with the delays, the seemingly indifference of those who hold the power to move things forward, and the total feeling of helplessness.

I hope it helps to know that people whom you don't know are praying for you and Mark.

I believe in praying "specific prayers", so I will lift up in prayer what you have outlined in your recent blog. I will pray for a positive outcome of all of this and that God will use it to His glory.

With heartfelt concern and prayers,

A Tennessee resident

Anonymous said...

Bless your hearts. Waiting on "the system" is so hard! I will pray for strength for all your family. God really does have Marks back,front and in between. Carry on with Courage.

Donor in AL

Nancy Murrell said...

OMG how frustrating. You wonder how people who you would think got into the medical field because they liked other human beings became so unconcerned when something so vital is on the line.

The good news is that none of these people will bring their attention to detail and human compassion to the surgery itself.