Lengthy Response to USC

OK, the background for this letter that I have composed to USC is here:
http://ihatedialysis.com/forum/index.php?topic=22011.0

Basically, I received this confusing and rather rude survey from USC after their idiocy with transplanting the wrong kidney into a patient. It was so obviously trying to build a case that they were not a load of incompetent halfwits masquerading as actual medical professionals. Rather than fill out the survey (which I have to dig up anyway, and I know they never mentioned at least half of the items on their list) I decided to take this opportunity to tell them what I really think of them. I have needed to do this for a long while. I am still so bitter toward them, even more enraged at them than at Madison. A really long letter, but if anyone does read it all and have comments/suggestions, I'd be happy to hear it. I hope to send it in a week or so.

Dear Medical Worker:

On 21 March 2011 I received your survey, demanding that I supply information from my transplant eval at USC that took place 4 years prior. While your letter states that I was there on July 5 of that year, I know that my eval actually took place in late June. Your letter states “We need you to verify that you were told about the following:” How interesting that you ‘need’ something from me, and obviously feel entitled to my time and effort as you never once phrase this as the request that it should be. Perhaps, before asking me for a favor, you might note that I transferred my USC time to Cedars in early 2008. Then you go on to state that this is needed for my medical records, a statement that any transplant hopeful is going to see as the thinly veiled threat that it is. Aside from that, you no more need this for my records than I need to hear from this transplant center. This is a blatantly obvious, pants-on-fire lie. I am going to guess that you are either being investigated by Medicare or are being sued, perhaps over giving a patient the wrong kidney! You need this for yourselves and it has absolutely nothing whatsoever to do with benefiting patients.

Since you clearly do not even know who I am, did not bother to address me by name, and only contacted me when you were in desperate need of something, I will fill you in on what the past four years have brought me. Let’s see: I contacted you in February of 2007, and arranged to have my records sent from various places. I phoned the coordinator assistant, John, who assured me that I would receive a phone call to set up an appointment within 4 weeks. It was already ridiculous that I could not even phone and get an appointment time straight away, but I decided to see it through. One month later I phoned to remind John of my existence, and he told me that my records were received and were in the hands of my future coordinator. A few days later I received a frantic call from John saying that my records had all been lost. Where are those records? They were in a coordinator’s hands one day, the next day they have evaporated. My social security number and all of my most private information were on those records, and your dangerously incompetent staff lost them.

OK, I was getting increasingly agitated, but for some reason stayed the course. I knew I was losing precious weeks on the list. John told me to have everything sent a second time and he would put a rush on it. “A rush” at USC apparently meant that I would get an appointment 3 months later. It turns out that the male coordinator who originally had my file was leaving his position, and somehow that translated to egregious mishandling of my records. S. was assigned to be my coordinator. I met with her in June and before I even sat down, she told me that the hospital will be ‘judging’ me. She is the only so-called medical professional (and that term is used so very loosely) who has dared use that word with me. How stupid do you think people in renal failure are? I was XX years old, no co-morbidities, excellent insurance, had a breathtaking health history, PRA of zero, GFR had only just slipped below 20, and most attractive of all, I was bringing my own donor. Every member of your transplant team was positively salivating at the thought of having me sign up with USC, and then you send in a coordinator on a power trip as my first introduction to your center. Shame on all of you.

After the eval, I endured several overpriced tests at your hospital. Whenever I drove the hour to get to USC, no one ever knew who I was, why I was there, or had the correct papers for these tests. I have it on good authority that these problems are endemic, not just down to bad luck, and persist to this day. Additionally, as I was trying to get someone to listen to me over at Keck so I could get a simple x-ray, I saw different patients running around frantically, saying that they had received garbled messages about needing to report to USC instantly. Chaos.

In July of 2007, USC’s many failings were becoming too obvious to ignore. I phoned Dr. Vincenti at UCSF. He answered the phone (yes, he answered the phone!) and discussed the transplant process with my husband. I received an appointment time with Dr. Vincenti for end of July, and he was every bit as considerate as I remember from my San Francisco days, when I attended UCSF’s post-transplant clinic. Oh, that is something I should probably mention – I had my first transplant in 1976, and it lasted 34 years. I have been to many evals, and I recognise exceptional quality medical care, disgraceful quality, and everything in between. I have met many of the big names, past and present: Dr. XXXX, Dr. XXXX, Dr. Vincenti, Dr. Jordan and most recently, Dr. Leventhal. I remember very little about the first two. The latter three could teach USC a thing or two about how to treat a patient.

I met with Dr. Vincenti at the end of July and was placed on UCSF’s list August 10, not two weeks later. Meanwhile, back in LA, I am still waiting for USC. I became desperately ill end of September, and while I was in hospital, S. left several messages saying I had neglected to get a final blood test for USC and had to return. I was able to stagger over there in October, still recovering from the worst bout of illness I’ve ever experienced. That blood test that no one had told me about was the final straw. I called Cedars. In December, I phoned S. to tell her I was transferring. It was then that she bothered to tell me that I was actually listed November 30. She asked why I was transferring, and I gave her some of the basics that I have just reviewed here, and compared my UCSF experience to my USC one. She brazenly tried to convince me that UCSF had only listed me Status 7 and that hospitals do that to look better to patients. Straight after our conversation, I rang UCSF to ask them about this claim, and I was told in no uncertain terms that I was fully active from my listing date.

During our phone conversation, S also told me that every minute mattered on the list (no kidding – USC robbed me of plenty of those minutes) and that I should jump through various hoops to get my insurance to approve USC before transferring. I told her I would do this. I lied. We all know how difficult it is to get insurance to approve anything – there was no way I was going to do that for USC only to have to go through it again, and explain to my insurance why I was switching. Did S somehow not understand that I was in renal failure, was still recovering from an illness that almost killed me, and did not have the energy for this nonsense? She knew full well that I had a live donor, so I was not exactly waiting by the phone. I met with Cedars on January 16, and was listed with them in February. Dr. Jordan told me that he did not even need to examine me – that I was a dream patient. (But I already knew that.) Everyone at Cedars was so welcoming and gracious – it was unbelievably refreshing after my stupefying year with USC.

We moved end of 2008, and I had the pleasure of meeting Dr. Leventhal. Dr. Leventhal helped me enroll in his clinical trial, and on March 18, 2010 I received a kidney and stem cells from my husband Gwyn. On March 17, 2011 – with 100% chimerism lasting a full year, I was told I could stop taking Prograf, the only immunosuppressant that I was still on. I have been drug free seven months. I accept your tacit congratulations that I did not need, and never will need, USC’s services. And quite clearly, I am not your patient, and don’t appreciate being addressed that way. I am many things: an award winning writer, a Masters graduate in anthropology, a mother of two brilliant children, wife to one of those rare and selfless live organ donors, and proud trial participant at Northwestern Memorial Hospital, but definitely not a patient of USC.

My husband marvels that you managed to be so rude and disrespectful in a scant 5 lines of text surrounding your survey. You use the phrase “if you were accepted as a transplant candidate” as if this somehow has to do with merit. These are people who will be responsible for diverting hundreds of thousands of Medicare and insurance dollars to your hospital, and you still feel the need to reiterate that you are in a position of power over them. Unbelievable. By the way, as an anthropologist, I’ve written my fair share of surveys. “We need you to verify that you were told about the following” is a laughably leading statement and would render useless any data you receive. That should be phrased “Please tell us whether or not you were informed about each of the following.”

I really think it is long past time for USC to get out of the transplant business. You are clearly a danger to people in organ failure, a population which I care very much about. You take people who are ill, many of them terrified, and you treat them like criminals, interrogating and judging them, wasting their precious time, money and energy with delays, excuses, and outright idiocy. You can take my name off your contact list. I am not your patient and no set of circumstances within the human imagination could ever get me to that hospital again.