Big deal or not?

[MooseMom]

My official listing date is 27 July 2010.  When I got the official letter from the transplant coordinator, it stated that I MUST come and see them in July 2011.  I had a few questions, so I emailed my coordinator who said that she would remind me of my 2011 appt and that she actually already had an appt card made up.  This was a year ago.

FF to this year, and I knew that my first anniversary appt was coming up, so I waited for that card I was promised.  By 15 July, I had not heard a thing, so I emailed the coordinator to ask her if I should just go ahead and make an appt or what?  She obviously knew I had slipped through the cracks because I got a reply from her telling me that oh, it was so very clever of me to be so pro-active and that what do you know?  The appt card was in the mail.

So, I get the card reminding me to make my appointment which does me no good at all because I had not had any of my tests done.  For that, I needed proper referrals, so I had to email her again to remind her of that.  I didn't get the referrals in the mail until the end of July, so, so much for that appointment that I was REQUIRED to attend.

I politely asked how much time they would allow me to get my testing done, and they said they'd like it done by the end of August.  So I scrambled and got the cardiac tests done in August, and then I went to make an appointment with the center's cardiologist (they now require that I see their own guy), but the first open appt isn't until end of September.  OK fine.

Then I still had to make an appointment with the coordinator who sees patients on the list only on M or Th after noon.  And the first free slot she had was 11 November.

So, it seems that no one really cares all that much that I see the coordinator in July after all.  I was lead to believe that this was all so damn urgent and obviously it is not. 

I'm waaaaay down on the list, so in fact I doubt that it really matters, but what if by some miracle, the perfect kidney became available for me?  Would the fact that they couldn't be arsed to get their ducks in a row in a timely manner have affected my chances to get that kidney?

I had to lead these people by the hand to get this stuff done.  I understand that we have to be ever vigilant and have to keep on top of things, but we cannot be expected to physically do these people's jobs for them.  At some point, they have to assume some responsibility, and if they fail, where does that leave us?

When I see these people in November (NOVEMBER!), should I say anything about the delay?  I KNOW they forgot me.  If I had not emailed them to ask them what I should be doing, I KNOW I would never have heard from them.  Or should I just  say nothing and adopt their laid-back, sanguine attitude?

[monrein]

I'm afraid that I would have to mention it to them and I would emphasize the toll that this kind of additional stress places on a person who is already stretched paper thin with managing life while chronically ill.  I would then be asking what can be done to ensure that this won't happen again...like should I start calling in March or April so I can have the correct paperwork in hand by July?  I'd also ask about the exact importance of the July date and what happens if it doesn't take place on time.  I'd try not to be too sarcastic or heavy but sometimes I can veer into that so I don't end up crying.  On the other hand crying can sometimes just happen when I'm way over stressed.   

[edersham]

This is so frustrating and I understand how hard it must be not lose it when communicating with those people. If it hadn't been for my wife dealing with the few relatively small glitches that came up during my process I probably would have wound up in the psych ward instead of tx surgery. Dealing with people who actually do what they say they will seems like a rare event these days.

Ed

[coravh]

I was lucky in that my process had relatively few glitches. As a diabetic though, I can tell you that you do have to do everything yourself. You can't count on these folks. Unfortunately, while they do care, any individual is not more important than any other and things get missed. I would be polite, but as others have said, I would find out from them what you have to do to make the process go smoothly. For next year, call months in advance and get the ball rolling. Hopefully by that point you will have had your transplant.

Cora

[paris]

I don't understand why things aren't done nationally the same way.  Wouldn't it make life easier for  everyone?   I also don't understand what they are doing, MooseMom.   I don't think I had the best co-ordinator, but she did all the scheduling, I got appt reminders 2 weeks ahead, and, for the most part, things ran smoothly.  I know they are busy, but it should work better than yours is.   The only appointments I made were for mammagrams and dental.  My once a year review testing was all done in a day when I meet with the team.   I am sorry this is so screwed up.  Non one needs any more stress.

[MooseMom]

I'm sure none of you would be surprised to know that I keep hard copies of all email correspondence along with notes on telephone conversations, and I will be bringing that "evidence" with me in November (NOVEMBER!) just in case someone tries to tell me off for delaying things.  They had SO better not chastise me!  They sure don't seem to be too bothered about the delay.  And frankly, I don't mind making my own appointments; I live 1-2 hrs away from the transplant hospital (depending on Chicago traffic), so if I can get my cardiac testing out here where I live, that's better for me.  But the problem is my HMO which, like all HMOs, have to issue a referral before I can get the testing done.  My Pap, dental and mammo I don't need referrals for, and I get that all done on a regular basis, anyway, but the cardiac testing is where things get bogged down.

My coordinator hinted that this may be the last year they allow patients to do their cardiac testing somewhere other than their center.  Last year, I could see the cardiologist out here, at the same facility in which I did the tests.  This year, I can still do the tests out here, but I have to have the results sent to Chicago and see Rush's cardiologist (they said it was so their cardiologist had experience with my case, or could it be that they want the money?).  So I would not be surprised if next year, I will have to have all cardiac testing and consults done at Rush.  But no matter what, I still will need a "script" from them to give to my insurance so that they will issue all necessary referrals so that THEN I can have the tests done and that THEN I can have the consults.

I bought a fax machine before I started this whole process because I could see the snags in communication in the future; thank goodness I had the foresight to do that!  This year, the process went smoothly all in all, but only after I reminded them that I still existed.  I've already learned that with this CKD stuff, you have to carry the load yourself, and that's OK.  But my main concerns is what happens when someone ELSE drops the ball?

The purpose of the July date is merely that it marks off the years.  It doesn't seem to have any true importance because no one at Rush seems unduly concerned that I'm not coming to see them until November (actually, the coordinator's assistant make the Rush appts for me, so he saw the delay and the reasons for it but was smart not to mention it.  But he scheduled me for a Friday appt with the coordinator, forgetting that she saw patients only on M and Th, so I had to call him back to correct him. lol)

The other thing that gives me pause is that since I had my cardiac tests in August, I am not sure my HMO will give me a referral for next year's testing until August.  They probably wouldn't pay for the testing if done less than a year after the previous testing.  You know how ins cos are.  Anyone have any experience with this?  I suspect that now, the July date is forever irrelevant.

 

So, I will mention it casually and ask if the July date is, in fact, a lot more pliable than they had me believe.  The wait list around here is about 5 years, so this is a process that I'm going to have to refine for quite a while.

[okarol]

You may be way down the list, but just as is the case with tyefly - if you're lucky enough to get that 6/6 call, and your file isn't up to date, they'd skip you. The burden really does fall on the patient.
 

[MooseMom]

You may be way down the list, but just as is the case with tyefly - if you're lucky enough to get that 6/6 call, and your file isn't up to date, they'd skip you. The burden really does fall on the patient.
 

That's exactly right...the burden IS on me, and that's why I took it upon myself to start the process rolling as it was becoming increasingly apparent that they had forgotten me.  I am not sure how my particular center defines being "up to date".  I know that if I got a call tomorrow for a perfectly matched kidney, they're not going to let me just waltz in to claim it.  They will put me through a whole battery of tests first, so if my file isn't "up to date", what exactly does that mean?  And let's say that I was scheduled to have my cardiac testing next week as required, but a call came in today...would I be or NOT be "up to date"?  They sure don't seem to have a firm definition of "up to date".

[okarol]

I agree, it's a moving target and we never seem to get a clear itemized list of what the criteria is. I would be pretty pissed off if they passed me over for a delay THEY caused!

[jbeany]

Oh, no, I don't think calling in April next time is a bad idea.  Don't wait until the middle of July next year, that's for sure!  I started trying to schedule the surgery I wanted done the first week of May by calling in November for the first available pre-op appointment in January.  I still didn't get in until the end of June!

[MooseMom]

Oh, no, I don't think calling in April next time is a bad idea.  Don't wait until the middle of July next year, that's for sure!  I started trying to schedule the surgery I wanted done the first week of May by calling in November for the first available pre-op appointment in January.  I still didn't get in until the end of June!

The only reason I waited so long was because when I was formally listed last year, I specifically asked how I would be reminded of my 2011 appointment, and I was told that THEY ALREADY HAD MY 2011 APPT CARD WRITTEN UP.  So, I saw this problem coming a year ago.  Since this was my first "anniversary", I wasn't sure of the protocol; for all I knew, their requirements had changed (and they had!), but I guess I'm going to have to go out and buy a crystal ball so that I can more accurately guess what the hell is going on.

Next year, I'll be better prepared, and when I see the coordinator in November (NOVEMBER!), I'll ask how to go about thiings in 2012.  Again, my only concern is that my HMO won't pay for the same test for the same reason twice in one 12 month period, so I may not have a choice in the timetable.

Anyway, thanks for the replies.  I will ask if I should start hounding them in, say, April.

[sullidog]

mine has never asked me to come in yet and it's been a year, I ocasionally do get letters though for me to fill out forms to update stuff and send back which I do.

[MooseMom]

mine has never asked me to come in yet and it's been a year, I ocasionally do get letters though for me to fill out forms to update stuff and send back which I do.

I guess you're not as popular as I am.   My center insists upon seeing me, but they just don't seem to care when.  Maybe I'm not that popular after all. lol

[tyefly]

MM....  I too have a good old HMO.....  and referrals and more referrals.... and appointments made so far down the road... well you know.....  You have to do everything yourself..dont wait.... keep track of everything and months before start getting those referrals....  if all they have is appt way down the road... then start calling on a regular basis and ask for cancellations.... every week ....  I had to do this....   when My transplant hospital wrote me and told me that I had one month to get all up dated testing done to stay active on the list,  I call them back and said its done...they were surprised....  I worked closely with my neph and GP to get those referrals...  I guess I can be a bother at times but I want to be  forgotten.... I want to do what ever it takes to get the job done..... just getting on Nxstage nocturnal was a big chore... took mounds of paper work ( many of them I found on this site and Bill Peckham site to support why nocturnal was better...has to convince my clinic and my doctor who was very open minded and listened... and dont forget the HMO...who said that no one does nocturnal..... NO ONE.... again I was lucky and very persistant...  You are that type of person too... you have the knowledge and you know where to get the information.... its easy to believe in the system and in people ...  often times it takes you to make all happen....  and then if you hit a wall....  find a way to get thru it....  I feel so bad for people who just sit back and believe that others will take care of them...and it not because they are lazy it because some are very proactive and others aren't.... to get the best care  we need to go get the job done, speak out and squeak hard....LOL    Now I have a whole new area to learn...transplant stuff.....  its almost like starting over....Ok fine   lets get going.....  I know soon you will be transplanted and learning the next chapter in your life.....  I love to learn... Like Monrein...I love plants...would rather just learning more propagation techniques....   I have alot of respect for you ..... you ask alot of questions and you have supported so many here.... I thank you for that...

[MooseMom]

How sweet of you to say that, tyefly.  that's so kind.  Thank you.

Well, I have a wee confession to make.  I was pretty certain that I'd fall through the cracks.  I am not in the least bit surprised by any of this, but I was curious to see how the center would handle my first annual appt.  So I just sort of sat back and waited to see what would happen, or, rather, what would NOT happen!  haha  And now I know.  I figured that since I'm so far down on the list, a bit of a delay wouldn't hurt too much.  But this is not going to happen NEXT YEAR!

I had my usual neph appt yesterday, and I asked the nurse if they had received their copy of my cardiac test results.  So she had to call up the facility and get them to fax it over (yes, the results were in but they had not bothered faxing them to my neph), and then she said to me, "Sometimes I think I have to do everything myself!"  I just laughed and laughed and told her about this transplant stuff, and she laughed and laughed. 

I am very good with following rules, and I am very good at documenting everything.  The red tape is frustrating, but it doesn't phase me in the least.  I know what I need to do, and I will do it. 

I know that you have a new set of hoops to jump through and new lessons to learn, but I share your confidence in yourself.  You have always moved heaven and earth to get the very best for yourself, and you will continue to do so.  I am just so thrilled for you!