More transplant pre-work up frustrations

[Cordelia]

So today I had to go into my doctor's office, physically and request my pap smear lab results. Seems to be a frequent problem, results making it to my co-ordinator   

Anyways, I have the document stating I'm good for transplant, from their office, thank God. It only took them since !@#$ April to finally get it right.   

I will hand deliver my results personally to my transplant doctor next month. I can't trust them to fax it again and screw it up. How sad and pathetic is that?!   

[Marina]

I  was  told  at  TX  evaluation  that  even though  a  request  can  be  made  to  Drs  office  to  fax  a  test  result  over  to  the  coordinator,  that  ultimately  it  was  our  responsability  to  make  sure  it  was  done.
So  what  I  would  do  is   call coordinator  and  tell her   "I  had  this  or  that  test  done  at  such  place"  my  coordinator  would  request  a  fax.    I  would  still    request  a  copy  from  place  doing  test  and  fax  or  mail  copy  to coordinator.   I  would  also  keep  a copy  for  my  own  records.

take  care!! 

[Cordelia]

Yes, I requested the fax. They still screwed up, so I took matters into my own hands and will hand deliver it instead.

Good idea about photocopying and keeping a copy for my own records too.

[MooseMom]

I go waaaay overboard with this sort of stuff.  I actually take notes of phone conversations that have anything to do with transplantation.  I have been on the list for one year, and my center completely forgot about me when it came time for my annual workup.  I had to remind them, and I have hard copies of the email I sent and of their reply.  I have copies of EVERYTHING.  I have printed out the contact details of both myself and of my coordinator, and I had out a copy to any facility I have to go to for my testing.  It is a fair amount of work, but I do it so that no one can accuse me of being lazy, uninterested or non-compliant.

Since my listing date is in July, I was told that I MUST go in for my annual appt in July.  Well, since I got forgotten, everything's been delayed, and they can't see me until.....NOVEMBER!  If anyone dares to give me any grief about it, I'll just pull out all of my notes and sweetly declare that they didn't seem to be in that much of a hurry.

Unfortunately, sometimes you just have to do everyone's thinking for them.

[paris]

Cordelia,  was it your personal doctor's office that gave a paper saying you were good for transplant?  Are you able to do all the testing through him or is any of it being done at the transplant center?  Sorry for the questions!!  It took me 9 months to get through evaluation. I kept reminding myself that I wasn't the only patient they had.  I had to learn to be patient.  I also double checked on test results.  It is more important to me than them, so I was always looking for results, etc.        My test and lab results are sent to my GP, Nephrologist and Transplant Center.  After over 6 years, I have had good luck with everyone communicating.     So much of it is online now and that is a huge help.  All my labs are online, so I can view the entire history.   Check with the docs and see if anyone does anything online.   I hope it gets straightened out soon.   In the end, it is part of our responsibility to make sure things are done, records sent, etc.  It is our life and we need to be actively involved.   

I think keeping copies is an excellent suggestion.  Make friends with your coordinator.  They are the most important person right now.  And also, can you email your coordinator at any time?  That has been a great way to communicate for me.   Good luck.   We'll be anxious to hear how things work out.   

[Chris]

I  was  told  at  TX  evaluation  that  even though  a  request  can  be  made  to  Drs  office  to  fax  a  test  result  over  to  the  coordinator,  that  ultimately  it  was  our  responsability  to  make  sure  it  was  done.
So  what  I  would  do  is   call coordinator  and  tell her   "I  had  this  or  that  test  done  at  such  place"  my  coordinator  would  request  a  fax.    I  would  still    request  a  copy  from  place  doing  test  and  fax  or  mail  copy  to coordinator.   I  would  also  keep  a copy  for  my  own  records.

I agree and had to do this pre and post transplant for any doctor I visit because I have run into problems. Luckily I brought copies, but x-ray's, MRI's type test need the report, not just the images.

[Cordelia]

No, it wasn't my family doctor's office that I had everything tested. Just the pap smear. My transplant hospital told me to go to my family doctor for that.

This wasn't the first time they screwed up, they didn't fax my husband's blood typing test either. Just seems like its a universal problem with the same office. 

Thankfully, my co-ordinator told me the results wasn't in my file and I'm seeing my transplant doc next month on the 13th to see if he'll okay me for transplant-which I guess if everything is okay, I move forward and go on the list                              

I'm really glad she mentioned it. I would have hated to get to my apt and not having everything compiled for the doc to make an assessment.

[paris]

     sounds good.   Sorry you are having trouble with one office.  It just takes one person to not do something to slow the process down.  Coordinators are really a lifeline. They seem to keep things in line.   2 more weeks till you see transplant doc.  I hope that is a great appointment and it leads to being listed.  It is an exciting time for you.     

[Cordelia]

Thanks, Paris   

Yes, all it takes is one person to screw up. I'm tired of screw ups. Time to take matters into my own hands and hand deliver the results myself, I feel much more relieved knowing the results will make it for my final appointment. Thanks for your well wishes