Please, I need some info re being listed

[MooseMom]

Yes, I have tried contacting my transplant coordinator to ask these questions; I've left her an email that asks what I am about to ask all of you.

I have completed all of my pre-transplant eval tests, including the ones the center wanted me to repeat.  They last met on the 15th to add patients to the list.  I have had no info from anyone about being listed or being rejected or anything.  I am patient; I can wait, but my mother is seriously ill, and I am going to need to go to Texas to be with her.  I don't know when I will be going or for how long.  There are other family members who are coming to her aid, but I am her only child, and I need to be there at some point in time.  I'd go immediately if I could, but I have this kidney crap I have to deal with first.  My questions are several...if I have been listed, is there something I need to do NOW?  What are the travel restrictions?  I just don't know what to do.  I have my regular labs that have to be done and then I have my regular neph appt...I need to get these things done because I missed my last appt because of having to have gall bladder surgery.  Can anyone give me some sort of guidance here?  Should I just pick up and go and damn the transplant stuff?  Thanks.

[cariad]

Should I just pick up and go and damn the transplant stuff?  Thanks.

Yes.

I would not even worry about the regular labs unless it's not too much bother. Until Gift of Hope (the creepy name for the place where you will send monthly bloods) starts sending you tubes, don't worry. You can even miss one of those and still retain your status. People have emergencies and lives on the list. Just go. Nothing happens once you are listed. There are over 100,000 on the list, most waiting for kidneys, so odds are you will be doing loads of nothing for quite some time. You need to concentrate your energies elsewhere now.

Good luck, MM. Hugs to you and your mom.

[MooseMom]

OK, thanks for that.  It's not like I'm going to be getting a kidney anytime soon, so that's not what concerns me; there just always seems to be so much red tape encircling everything.  My mom is stable at the moment, and once my aunt and uncle get there tomorrow and look in on her, I can make a better informed decision as to the timing of my trip down there.  Hopefully the transplant coordinator will contact me tomorrow.

I know that people on the list have emergencies that come up and can be accomodated, but this is all new to me, and I just wanted to do everything right.  I've fought so hard to get listed (and I don't even know yet that I am!  This may all be moot!) that I don't want one small error on my part to make everything go pear-shaped.

Thanks again.

[Rerun]

If they give you any crap about leaving to take care of you mother that is no reason to not be listed.  You can be listed to build TIME and just put on hold.  If you are taking care of your mother and got the call what would you do then?  But, you could still build time.

[Sunny]

Call the transplant coordinator and tell them when you will be leaving town to care for your mother. Makes sure they have your cell phone contact number. Assume you have been accepted on the list and proceed according to that assumption. Whenever I leave my transplant area I am required to tell them when I'm gone and then to call them upon my return, only if I'm out of the 4 hour range from the hospital.

[MooseMom]

Well, my mom is in the hospital, so I don't have to be there to care for her per se, but I may need to be there soon if she is in real danger of passing away.  My aunt and uncle will arrive in Houston today, so I will have more info later as to the seriousness of her condition and a possible prognosis.  I did receive an email reply from the transplant coordinator who merely said that she would look at my file to see where in the process I am (that doesn't sound encouraging to me...can anyone interpret the meaning of that?).  If I need to go down there, say, tomorrow, I will take your advice, sunny, and just give them all of my travel details and contact info.

Thanks.

[paris]

Sunny is absolutely right.  Especially this early in the process, I wouldn't worry about leaving town.  Give them all the contact numbers.  When you're are listed, there really isn't much to do but wait and have your blood drawn.  There have been times when my "red top tube' wasn't sent on time.  It is ok.   I think coordinators are really good at being vague.  She probably just needs to check if the transplant team has reviewed your case.    I hope she tells you something soon.     For now, go be with your Mother. With cell phones, you can always be in touch with your center.   I will say some prayers for your Mom and for you during all of this.   

[MooseMom]

Well, I'm glad I contacted the coordinator; I've had a reply, and apparently I'm not listed yet because they CLAIM they have not received a report from the cardiologist (I spoke to the cardiologist about the report; she wanted me to have a doppler done just to be safe, and she phoned me at home to tell me the test result looked great and that she wrote her report and sent it, so someone is either lying or incompetent) nor a surgical report re my gallbladder removal.  Now, I am a stickler for detail, and I specifically asked the coordinator if she would need a report.  She said all she needed was the date of surgery, which I supplied.  After surgery, I emailed her and told her it was done and asked AGAIN if she needed a report.  "No."  I have proof of all of this because I have a hard copy of all email correspondence in my neato nifty transplant file.  So, I guess I could have sat here for God knows how long just waiting for something to happen while they were waiting for info that they didn't tell me they needed.  Anytime I breathe, I tell them, so if they were lacking information, they should have told me.  The next listing isn't until 6 July, so I've missed yet another month of accrued time, and I am beyond furious.  I should have to do everyone's job for them.  I am particularly disappointed in the coordinator; I had allowed myself to trust her, and I even LIKED her a lot, but she has let me down horribly, and I am soooo not pleased.  Just what I needed as my mother is so ill.  Well, now I know I can just up and leave and it not matter.  And I've spoken to various people who will fax the pertinent info to Rush asap...

[okarol]

  I know. It's maddening! This is why I tell people to call. If you haven't heard anything it's because nothing is happening. You could sit in the file for a year!! Too bad coordinators don't make a time line and check list so patients don't have to track everything down. I am glad you followed up MooseMom. So sorry about your Mom.

[MooseMom]

I know. It's maddening! This is why I tell people to call. If you haven't heard anything it's because nothing is happening. You could sit in the file for a year!! Too bad coordinators don't make a time line and check list so patients don't have to track everything down. I am glad you followed up MooseMom. So sorry about your Mom.

  I'm so glad I took your advice.  I hate badgering people, and I try to trust people to do their jobs.  I know I am not the only patient they have.  But I learned a lesson today.  I know how to ask questions without being overbearing; I should just trust my ability to schmooze.  Again, thanks for the advice!

The tx coord. just emailed me and said she'd give my file to the neph and pencil my case in for 6 July.  I'll let a few days pass before badgering her, but I WILL follow up!