New coordinator

[paris]

I got a letter from my new transplant coordinator a couple of weeks ago.  My third one since this all started.  I thought I had fallen in a crack with them.  My 1 yr post transplant appointment was never scheduled.   I emailed her and the response was "I don't do appointments, that is my assistant or the front desk".  Oh Lordy, I have a winner this time!  She also said that they are behind on their "annuals" and are just now doing June's schedule.  I responded, I am not having my "annual", this is my 12 month post appointment.  I told her I could understand delaying the yearly round of tests to stay on the lists -- but this is a whole different story.   I also said that this was a lifetime relationship between me and the transplant center and I needed us to all be on the same page.    I have been feeling down lately and a little underappreciated and overworked, so being forgotten by my center didn't boost my mood at all.   She said she can make an appt for me in January!!  My last center appointment was @ 9 months. Now we are past a year and she can "work me in January"?  I have been to my local neph and had my labs, but I am upset about the carefree attitude and need some reassurance that I am doing ok.   

I've whined enough-sorry.  BUT, this lady doesn't know who she is dealing with!!  Next contact will be the surgeon.

[willowtreewren]

The worst thing is that cavalier attitude....

I know this is unsettling. 

Keep the pressure up!  The squeaky wheel!!!!!

Aleta

[okarol]

Once you get a transplant here the follow up is with your neph and local lab, except, as you mention, with the annual follow up. Most transplant hospitals want to know how you're doing and if their prescribed protocol is working. I am very surprised that they aren't interested in a timely and thorough check up! I would send a letter to the head of the transplant team. The surgeon may or may not do the follow up, but the team is responsible to follow you - I believe UNOS requires a 3 year tracking - not sure where I saw this.
We are dealing with that here on the pre-transplant level. If we don't make a move, nothing happens. It's ridiculous. And I have talked with the head of the dept, who seems sincere yet powerless.
As far as post-transplant, we get Jenna's labs done monthly, and we share them with everyone, but I feel like if we don't watch them, no one is.
 

[edersham]

I went through a similar experience untill the transplant center learned my insurance wouldn't pay unless the testing was done by the one year mark. There were two weeks to go and magically they got me in the next week. They can do it if they get really motivated.

Ed

[paris]

When I had my 9th month visit ( was going monthly at that time) the surgeon and co-ordinator said the next visit would be in 3 months.  I said "you trust me for 3 months on my own?". They laughed and said yes.  The front desk said they couldn't book it yet - their system was wonky that day, but they would send an appt card and call me.   The surgeon told me to make an appt with my local nephrologist to start the upcoming transition, but he would see me at 12 month then 18 months.   This new co-ordinator is not listening.  I have always had good luck with my center.  I got another email today stressing the importance of my participation in the health of my kidney.       I need a gun!!  She is not listening.  None of this mishap started with me not caring.   She is determined to prove me wrong and in the meantime Sean hasn't been seen.   I know all of this would have been done in an orderly fashion if they hadn't changed my co-ordinator.   Today, I may email my last one.  We had a good relationship and was always impressed with the knowledge and interest I showed.    Also the present supervisor of the co-ordinators is my original coordinator.  Think I wiill contact her too.  I have always had a good reputation as a patient in the center --- now I am going to become their worst nightmare.   These are the times I would like to be King and scream "off with her head!!!!"                 

[paris]

I was finally able to have a live conversation.  She wanted to explain the difference between an annual visit and a follow up visit.  Why did I get the brand new co-ordinator?  She was a floor nurse before this.   Even on the phone she made it everyone else's fault but hers.  What I explained to her is that SHE is who we are suppose to contact. She is our first line for questions and problems.  Well, she's new.  Duh! I know that!  I explained that I thought she should have looked at my records before answering me and had a quick tutorial on my case before responding.   As she lectured me again, I started seething.  When she told me I couldn't get an appointment until Jan or Feb, she was talking about the full blown annual with xrays, ultrasounds etc. And yes, I should have been seen for the 12 month follow up.   Now we are getting somewhere!  She said "Oh I could have gotten you in for a clinic visit any day!  Just not the annual".   I replied, I know that --- I have been at the clinic for a long time.   Then the tears started.  I don't cry often or in front of people.  The realization hit me that I will have to go through things like this forever.  Fighting, scratching for things to be in place the rest of my life.    I am so glad for a transplant, but today I am just not sure I can handle any more problems.   Life is hard enough without medical issues.   I am sitting here still in my pajamas (2pm), going through a box of tissues, wondering where the next batch of strength is going to come from.   I'm just going to have a pity party for poor me  LOL.   

[cariad]

Oh, Paris, I feel for you. I absolutely hate it when people are more concerned with how they are viewed than how they are treating people who have enough on their plates as it is. This is the woman's job. Of course we all have a responsibility to ourselves to do what we need to do to stay healthy, you were doing everything and MORE to meet this responsibility, she was still trying to blame the patient with no acknowledgment of your individual circumstances. This must stop. They need to knock off the form-letter, cookie-cutter treatment and speak to your specific situation.

Good luck. We are with you on this.

[Meinuk]

  Paris

Just to contrast with my clinic (it is a zoo)  Other than my first two months after transplant, it has been my responsibility to book my appointments with the front desk.  And it is a cattle call.  You have to get there the day of your appointment and put your name on a list and if you aren't there at the crack of dawn, you may not get seen until afternoon.  The catch is, the neph STARTS clinic at 11:30 am.

So, get there at 8:30, do bloodwork (don't get me started on same day bloodwork) then run upstairs, put your name on a lst, and then wait, and wait, and wait (then wait some more).  I am lucky that my clinic is on the Columbia Campus, so I usually run errands or visit friends.  But it is always a wasted day for me.

For three years, I have never asked for special treatment, but I have to say that I am close to doing just that.  Everyone can laugh that I waited until the last minute to refill some of my meds, and the rx ran out, the pharmacy called the clinic, and whoever answered the phone (didn't know me and just glanced at my digital record) said "Tell her that we won't refill her meds until she comes in for a clinic visit - she's overdue".  My pharmacist cracked up and then called me to laugh that I was "non-compliant".

A simple e-mail corrected the problem, and I am going in for a clinic appointment on 12/19 (I booked the appointment myself). So much for being "non-compliant".

The upshot is, it is not personal. They're not singling you out, it is worse than that, they are ignoring everyone.  The system is so overwhealmed, understaffed and poorly educated that we are simply names on a chart.  Your ex-floor nurse coordinator will either get with the program or move on.  You'll still be there.  If she is treating you like this, she is treating everyone like this.

We love you, we support your battle, but like Karol does, you just have to do it yourself.  Don't trust them to be able to follow up.  You need to tell them what to do.  It sucks, BUT, you are a strong, smart empowered woman who knows the ropes.  You'll be able to teach them a thing or two before it is all said and done.

Don't let them get you down, you're the winner in this game, against all odds, you are alive, celebrating holidays with your family and NOT tied to a dialysis machine.

(Epoman & Susie would be saying kick some a** and take some names - then Susie would give you a big bear hug and offer you a shot of tequila)

 

xoxo

Anna