Pre-Transplant Testing Frustrations.....

[Cordelia]

My husband and I (both of us ...my husband is my living donor) have both fell through the cracks so to speak when it comes to the testing.....where it takes 2 + months to find out about something that should have been corrected in a week ....two weeks....max...in my opinion!!

This is very frustrating and infuriating!!!!! My husband's 24-hr blood pressure monitor failed to record all his bp readings and he has to do it again       

I understand electronics can fail but hello, it took two months to find out it failed. The maddening part is the sad fact that the so-called co-ordinator KNEW about it LONG ago and neglected to say anything!   

Yesterday we were very upset when we found this out. On top of it, the transplant co-ordinator my husband was supposed to be hearing from MONTHS ago, finally decided to call him yesterday. Unfreakingbelievable. Thank God for MY transplant co-ordinator as she was a bit more on the ball in regard to at least taking "over" the other transplant co-ordinator's job.....wherever the heck the other one was for the last 5 mos, I have no idea. How sad is that?!

Oh, apparently, from my husband's 'new' co-ordinator said was that, the bp thing has only happened 'twice' before, well, that is too many times to be honest. The only GOOD thing that happened out of this mistake is the fact they will be implementing a new protocol to ensure it doesn't happen again to somebody else.

Same thing happened to me. I was the 'second person' in a few years where I fell through the cracks of the system.....I had a LONG delay even getting the dang referral for a transplant   

I get so frustrated. Last night I had a DARN good cry   

[Deanne]

I'm sorry! 

Your coordinator sounds like a dufus. It's wrong that you should have to pay the price for her/his ineptitude.

My coordinator screwed up in my opinion, but not like yours. Mine scheduled me for a CT scan on my pacreas because the ultrasound shows a pancreatic cyst. CT scans require using dye. They poked my arms full of holes trying to put in the IV. It's hard to get an IV into me because I have small veins. They had me drink the chalky stuff. Then they came back to say it was too risky, so they were calling it off. Now my coordinator is saying, "Oops - sorry! I'll look for an alternative test."

[cattlekid]

My mom had trouble with the 24 hr. BP monitor as well.  She is in PA, I am in IL so she's doing all her tests so far long-distance.  She took her order for the 24 hr. monitor to her primary care doctor.  They fished around in the closet for the monitor and got it hooked up.  Well, she was on it no more than 2 hours when she realized it wasn't doing anything.  So she went back to the dr.'s office, where they realized that there was a part missing/broken.  So they had to order the part and it took 2 weeks to arrive.  After the new part was installed, all was well.  The dr. at least was very apologetic regarding the broken equipment.  Of course, it's a smallish town so the dr. may not be using the monitor all that often. 

My biggest frustration so far with the pre-transplant testing is the lack of communication.  Two weeks ago, my mom said that she found a UPS package at her front door with supplies for the latest test.  She had gotten no phone call or email from the transplant center to tell her to be on the lookout for a package.  She doesn't often use her front door so she was lucky she saw it.

[Sax-O-Trix]

I had two siblings who were compatible donors and it still took 14 months from the beginning of testing until the actual transplant took place (we all live in the same town).  We experienced all sorts of mis-communication and frustration along the way.

[Brightsky69]

When i was in need of a kidney my brother and cousin got tested....the coordinator took months to schedule them for testing then never called them back with any results.

[MooseMom]

I really don't like having to say this, but I honestly believe that if you go into the whole process expecting to have to do everybody's thinking for them, you will be much better off.  Expect incompetence.

I had my pre-transplant eval Feb 2010.  The transplant nurse coordinator who was assigned to me had been a dialysis nurse for 13 years, and she had been a coordinator for 3 weeks.  She was new to everything, and so was I.  I was fine with that.  We clicked immediately, and I felt like I could work successfully with her.

I spent three hours talking to her and to the surgeon.  They took 13 vials of blood from me to do all of their testing.  When I left, I felt good about how the day had gone.

About three weeks later, I got a call from some underling at the transplant center, and he explained that...(are you sitting down?)...they had forgotten to test my blood to see which blood type I am.  I had actually gone for an evaluation at the same center in 2004, but I was not listed because my numbers weren't bad enough, but they still had those records.  However, they required TWO pieces of documentation that showed my blood type.  They forgot to type me.  I couldn't believe it!  So I had to arrange to go to my local clinic, get my blood drawn again and have the results sent to the transplant center (which is about 1 1/2 hours away from me).

That's when I knew that I was going to have to stay on top of every single little thing.  I bought myself a fax machine, got my coordinator's email address, bought a binder in which to keep every single scrap of paper, and I do NOT expect that any part of this process is going to be easy.  It makes life much easier when you lower your expectations.

My listing date is 27 July 2010.  I was told that I MUST go back for a follow up appt in July 2011, which is now.  I know how long it takes to get referrals to have my cardiac testing done, and I can do nothing until the transplant center sends me the scripts ordering the tests.  Have I heard anything from the coordinator?  Hell, no.  So I figured that I have at least 5 more years of waiting for a cadaveric kidney so there's no tremendous rush, and I thought I'd amuse myself by seeing how long it took before anyone remembered me.

I got bored with waiting, so I fired off a polite email telling the coordinator that I'd already sent her all of my reports from mammo, pap and ekg, so can I now make an appt?  Well, I got this grovelling reply telling me how on the ball I was  and how great my timing was because she had just sent out the cards .  That was all BS, of course, but being a kind and merciful sort of gal, I let her get away with it. 

I will now inundate her with every detail of every referral for every appointment that I make.  What they really want to know is 1.  that you are healthy enough to survive surgery, 2. that you have no active infection or cancer that will devour you because of post-transplant drugs, 3. that they will get paid and 4.  that you will jump through their hoops.  Our job is to keep ourselves healthy and make sure the damn hoops are out there in the first place.

[Cordelia]

Oh my goodness, I'm reading all your stories here, I SO understand and can relate to your frustrations! I'm sorry you all had to go through that......   

I'm so glad we kept on top of my co-ordintator, asking questions, etc....If we wouldn't have, God only knows what may have happened.

It's not easy for my hubby to take time off work and its an hours drive to the transplant hospital so they have offered to have him hooked up on a day in Aug when I have to go back for a stress echo test......they'll hook him up then, then he can just fedex the device back to the hospital, thankfully so it will save him taking the extra time off work and losing wages plus the gas and wear and tear on our vehicle. He could have had the monitor hooked up here in my city but they would have charged him $40.      My husband ended up calling the co-ordinators' boss, explained the situation and this is what they offered.   

[MooseMom]

Oh my goodness, I'm reading all your stories here, I SO understand and can relate to your frustrations! I'm sorry you all had to go through that......   

I'm so glad we kept on top of my co-ordintator, asking questions, etc....If we wouldn't have, God only knows what may have happened.

We could write a book or make a movie out of all of our stories!  The funny thing is, my neph recommended this particular center because they "communicate well" with their patients.

After a while, you learn to anticipate problems, you learn to recognize which things may get missed.  The transplant center has to keep track of hundreds of patients, but you have only ONE to keep track of...yourself.  I just find it easier to carry most of the load myself.  But I recognize that there are a LOT of people out there who are much sicker than me and who don't have the time because they're having to deal with dialysis while I am not there yet.  So it's real easy for me to sit here and tell people that they must rely solely on themselves.  Somewhere along the way, you have to trust other people to competently do their jobs, but I'm not at that trusting place just yet.

[Cordelia]

So very true!

[Pam]

I can't believe the incompetence of some of these centers. Mine has been just the opposite, I've been on the list 2 yrs. Both times they did blood work and EKG. Then gave me a list of all the tests I needed. I took the list to my PC and they set every thing up. Both times the test were done in 2 weeks, except for the colostomy witch took loner to schedule. At each test I gave them a copy with the tests to be done, contact info and fax numbers etc.
Pam

[tyefly]

For me I got thru the testing to be put on the list pretty fast... and was listed....  but I am still working on getting on a Paired dontation program because I have a donor who wants to donate but he can not get worked up because we are still in the contract stage....  I am all done with everything and now we have to work thru the insurance part....  but I am still listed another transplant hospital so my time is still going....  I would think that if you have a donor  that things would speed up....but its looks like to me that everything get slower...  from what everyone has said on here about living donation....  its like our gov  it takes way too much time to do anything... 

[edersham]

I just have to put a plug in for Mayo in Phoenix here. It took 5 months from  my testing to my living donor transplant and 2 mos of that was because of a family issue with my living donor. There was a two week delay because of Mayo but I feel awlfully fortunate listening to others frustrations. Godspeed everyone.

Ed

[MooseMom]

I just have to put a plug in for Mayo in Phoenix here. It took 5 months from  my testing to my living donor transplant and 2 mos of that was because of a family issue with my living donor. There was a two week delay because of Mayo but I feel awlfully fortunate listening to others frustrations. Godspeed everyone.

Ed

Oh that's right, make us jealous.

[Cordelia]

I've been on dialysis for 11 months....almost a full year and I'm still waiting for myself and my living donor to get worked up.   

Here in Canada its usually about 18 months I was told for a transplant. I'm beginning to think mine will stretch to that. They're talking Jan/Feb....but I won't know for sure until Sept. 13. That's the date I go back to my transpant doctor and....I'm only assuming I'll get a date at that point as I haven't found out results from all my testing yet. I pray and hope to God he doesn't want to do anymore testing. Once I go for my stress echo next month, that's it for testing as far as I know at this point.

[Jie]

Transplant coordinators are among the busiest workers. The best approach is to call them often to get an update. I have dealt with a few coordinators and they are good to call back.  I thought that a crying baby would not be ignored...just pick up the phone to call if you do not get results within a reasonable period.   

[Cordelia]

That's what we were doing.....calling every couple weeks. Somehow, there was still a miscommunication amongst their departments.   

We had been warned to call, keep tabs....every few months if we didn't hear anything. We were calling every couple of weeks instead....there was no way we were waiting 2/3 months.

[lawphi]

I micromanaged three different transplant centers (UNC, Wake and Yale).  I did not have to do a thing at Johns Hopkins to get everything completed and taken care of. 

UNC was the worst.  It took seven months just to get the appointments to be listed.  Wake was a lot better and I only had to micromanage my husband's coordinator twice.  Yale forgot to send a final crossmatch kit.

Bottom line, change centers.  Go online and look at hte average wait time for a living donor at the different centers on UNOS.  You can find a center that has more resources. 

My practice is the same way.  As a professional, I get very busy and can't keep up with everything I need to do for all my clients.  I have instructed my clients to email me should they have expected something be completed.  That typically helps.  I imagine transplant are a lot like practicing law.  One minute, I am drafting an Order and the next second I receive a domestic violence emergency.  That Order gets dropped fast.   

[MooseMom]

Seriously sick people shouldn't have to micromanage anything, especially their transplant centers.   I do email my coordinator when I need something, but I shouldn't have to do her thinking for her.  She's paid to do a job, and she shouldn't have to rely on sick people to remind her to keep to the rules THAT THEY SET AND IMPOSE.

[Cordelia]

Boy I sure wish I could email my co-ordinator. Everything has to be done by phone. They won't give out email addresses.     

[lawphi]

I agree Moosemom 100%.  It scares me to think that not everyone in my husband's situation is married to someone that can resolve these various issues.  I can see patients waiting years over paperwork not being returned by a provider.