Thursday, November 17, 2011

A Response to the Ultimatum Letter from My Transplant Coordinator

** Mere seconds after I published this I realized that to you, the reader, this might seem a little unfair toward the University of Utah Transplant Program. It might seem that way, but it is not. If you knew all the ghosts on the inside of the situation, you would realize that I may be more than generous here.

Dear Heidi,

Thank you for your recent letter, which I received in the mail today (17/11/11). I did not appreciate your tone, nor did I appreciate your ultimatum. While it is true that I have not returned the 3 phone calls you've placed to me "in the last 2 months" as your letter states, did you or did you not speak with my mother on the phone just last week? The messages you left me did not appear to be urgent, as you said each time you were calling to "check in". I did not feel it necessary to call you back.  Here is why:

  • I was in your program for one full year and received approximately 2 phone calls from the other coordinator. If I called, I was treated abhorrently; like a small, idiot child who failed to understand the intricacies of organ transplantation and the required waiting time when one is on the wait list. Well, I do understand and I've done this before. I just found it odd that a terminally ill patient (granted ALL transplant patients are terminal) was contacted only TWICE in one year, once to say there was an available kidney and NOPE, clerical error!, and second to say I needed to come to transplant clinic if I wanted to say on the list. That does not set a great precedence.
  • Because of the seeming incompetence of your program, I've been in the process of switching to the transplant program at IMC, where they are shocked that I've been on the wait list at your program for a year and a half and STILL do not have a kidney. Yes, I'm switching from your program, not being double listed, leaving, abandoning ship, saying sionara. For the last 18 months, I've been on the UNOS list, which I know you don't control, but my sister and I have also been in 2 paired donor programs which have yielded no results, and most likely, no trying for results. As it turns out, your program has never done a paired exchange, while the IMC program does them frequently, with people who have higher PRAs than I do. A paired exchange is my best bet, therefore your program is not my best bet. 
  • Your letter stated that you need to be able to get hold of people on the wait list within 1 hour of when a kidney becomes available. I believe you currently have my cell, home, work, mother's, and sister's numbers, all of which would be adequate to reach me on if a kidney was indeed available. It's probably wrong to assume, but I figured that you would go ahead and try me on one of the other 4 numbers you have listed for me if, in fact, a kidney was available and you could not reach me on my cell, which for the record is the only number you've called other than my mother's last week. Also, I'd like to think that if you did have a kidney available for me that you'd tell me on the message instead of saying you were "checking in" each and every time you called.
I recognize that the gross negligence on your program's part in the first 18 or so months that I've been with it does not mean that I should now turn the tables. I did actually think that my transfer to IMC was complete and that any day I should be taken off your list and out of your system as an active patient. It is my own fault for not recognizing that. But the threat in your letter? That you're going to place me as inactive if you don't hear from me by December 1st? The University Health Care Transplant Program has been contented to ignore and belittle me for a year and a half. Now you are taking my life, which no one has ever shown regard for, and threatening to put it on hold, once again and even more than it already is, because of an unreturned phone call? It seems a little petty and a lot ridiculous. 

So look forward to me calling you tomorrow. And I'm not going to hold back. I'm going to tell you exactly what I think of your program and exactly what I think of the letter you sent. Then I'm going to tell you all the reasons why I'm transferring to another program. Lastly i'm going to tell you good riddance and that my experience with the University Transplant Program has inspired me to make sure the next job I get has insurance that is accepted by IHC, or Select Health or whatever it's called  now, because I NEVER want to have to even consider being treated by anyone in your program again.

Until tomorrow,



  1. Oh dear, Sarah. The University Transplant Program is lacking in so, so, sooooo many places. Granted they can't transplant Spencer here at the U and we have to move across the states - they have been of VERY little assistance to us and we have had to spear head the whole process ourselves. Goodness knows we have never done any of this before and had no idea where to even begin. No numbers of people to contact to help us out. No mention of the next step in saving Spencer's life. Telling us that WE were dragging our feet in getting on a transplant list somewhere. It's all so very wrong. THEY are dragging their feet in saving an individuals life and it makes me so angry to hear they are 'risking' your life by putting your name as inactive for something as simple as returning a phone call. I am so sorry your going through all of this and I don't blame you one little bit for switching centers. My best wishes go out to you and I will be praying.

  2. That was my first thought...has she gotten into IMC's program? They're the ones making news in the papers for paired donation and stuff like that. You don't hear much from the U's program...apparently for good reason.

  3. There were a lot of things I wanted to say in response to this but seeing as how other people read these comments and probably don't want to be exposing to my eye-searing profanity, I won't. But just know that I was screaming at this idiot woman at the top of my lungs in language that would make a sailor blush!! Go Sarah!