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,


Wednesday, November 9, 2011

Life Makes Love Look Hard

 I've been pondering something lately that I never thought I'd do, or ponder: online dating. Stop laughing. All I've been doing is pondering it. I haven't signed up for, or taken whatever compatibility test eHarmony advertises, or even gone to any of those sites to "check them out". I've just been thinking about it because I currently have no viable avenues for meeting men. Unless you count the bus, which I don't.

Since I moved back with my parents (for medical reasons, y'all) I'm not going to church with any single people. They're all married with children, or just married, or retired with glaucoma. I don't meet anyone at work, even though I work at the University and there are literally thousands of men there. I work a desk job, and my office has very little traffic. Occasionally people come in to use my stapler (no innuendo intended) but that's about it. All my good friends are married or dating-committed and I am apparently not the friend anyone sets up with people they know.

I know I have some issues. The whole no-kidney-terminal-illness thing is sort of a big deal, and I know from past experience that it's a big deal to other people too, and not "I'm kind of a big deal" in a good way. It's scary, not knowing whether you're going to live forever with dialysis or always be sick. It's scary to others who don't understand, or even worse, who do understand the gravity of the situation. Because of my medical issues I may not be able to have my own kids and in the LDS culture that can be a deal breaker for a lot of guys, which means I am sort of a deal breaker myself, not by any fault of my own, but just because it's become my lot in life. I think that's why Mormon boys don't like me. I don't fit into the mold of perfect wife, perfect life. With me nothing is really ever perfect, it's always a little messy and I don't think anyone thinks "I can't wait to get married and have a messy life".

So maybe it's not in the cards for me. Maybe the tables will turn one day and I'll be my parents' caretaker, rather than the other way around- which is what it is right now. I can always be cool Aunt Sarah and buy my nieces' and nephews' love with gifts, since I won't have any kids or a husband of my own to spend my book money on. I'll finally get my fluffy gray kitten, but I'll draw the line at one. I will not become the local cat lady. I'll travel the world... well maybe just Europe and the Caribbean and other places that I won't get diseases by drinking the water. I'll buy a house on the beach in Carlsbad and the ocean can be my companion. At least I'd be reassured that it will always be around.

And that's why I've started thinking about online dating. Because planning my life of solitude does not seem like the life I really want to have for myself. Lord knows I can't cook for just one and I hate leftovers, so I really need to have someone to cook for. And I really need to have someone to write to. and I really need someone to love with. Love rich and love deep and love far. Just love.