Question for the medical professionals on the site

[Riki]

I got a letter today, asking me to have an abdominal ultrasound done to check for space for a transplanted kidney.  Until this is done, my status on the transplant list is on hold.

Is this really necessary?  It seems to me to be yet another attempt by the transplant coordinator to have me off the list.  I've had the two transplanted kidneys since I started dialysis back in 2004, and they've decided NOW that this needs to be done in order for me to stay on the list?

[willowtreewren]

Riki, do you still have those transplanted kidneys? If so, they are taking up space. I know that my husband is very slim. They assured him that there was room for a new kidney, but I have to tell you....it sticks out. You can see the shape of it! Enough room, but barely!

Aleta

[Riki]

yes, I do have them, and I know they are there.  I'm far from slim, so really, the only one who knows exactly where they are are me and the transplant surgeon that put them in.  I don't mind if they have to come out to make room, but to take me off the transplant list until it's known whether or not there is space for another kidney seems ridiculous to me.  I've been on dialysis now 7 and a half years, as of a few days ago, and now they're worried about whether there's space for another kidney?  I honestly don't know why it would make a difference either way since one of the surgeons told me that they'd just take one of them out before they put the new one in.  It just seems to me to be an underhanded way to get me off the list for a while.  They do it all the time, and I'm tired of it

[justme15]

pardon my naiveté, but why would they take you off the list for a while?

[Riki]

pardon my naiveté, but why would they take you off the list for a while?

That is one of the questions that I'm asking, since that is what they've done

[fearless]

I am unfamiliar with this and have no idea why they would do that.  Will you please tell us if you find out?  Perhaps your instincts are right....

[Riki]

I found out yesterday that I'm not the only one who got a letter like that one.  A guy, a little younger than me, who's had 2 transplants, has been on dialysis the same amount of time as me (We trained at the same time so I know how long he's been on), and has also had issues with non compliance as a teenager.  I also know that the nurse who sent us the letter argued on our behalf for us to stay on the list but the powers that be (who are in another province and never see us) overruled her

[fearless]

that sounds weird.  Perhaps they've decided to try to thin the wait lists, and that's one way they can pick off a few people.  But they must listen to your surgeon who said they'll just take one out if they need to make room for another!  Right?  Can you find out who the "powers that be" are?  Maybe some direct communication would make them understand how ridiculous the question of "room" is?  Maybe they just don't have a clue about what kidney transplantation really is!

[Riki]

As far as I can tell, it came from the transplant team, as the information came to the nurse to send out the letters during rounds.  They don't see us, because they're in a different province.  I don't know about the other guy, but they'd been trying to get me off the list for years.  They even went so far as to accuse me of sabotaging my transplanted kidneys, and causing the peritonitis infection that took me off PD and damn near killed me in 2008.

Suffice to say, I've not had a good relationship with these people, and unfortunately, there is nowhere else I can go

[fearless]

I really don't understand this.  Why would these people want you off the list?  What's it to them?  If they really don't like you personally, wouldn't they be happy for you to get a transplant and be out of their lives?  Can they really be so evil that they don't want you to get a transplant?  That's just awful.

[Riki]

They really think that I do things to myself to ruin kidneys and give myself infections.  They hold being on the list over your head, and if you do anything they don't like, you're off it.  One of my dad's friends actually had to get a lawyer in order for them to keep him on the list, cuz they kept taking him off it for no particular reason.  I don't understand why they do it, but they do

[fearless]

that's horrible Riki.  I didn't realize how lucky I was to be with a clinic that has nothing to do with whether I'm on the list or not.  i dialyze at a Fresenius clinic, and I'm registered through a hospital where all the transplant evaluations were done.  The clinic doesn't really know what's going on with my transplant list.  They do help me by sending the Gift of hope blood every month, but they have no communication with the transplant center unless it goes through me.  I'm so sorry for your situation.  Heaven knows you don't need people working against you when you're in a situation like you're in.  I hope things can smooth out, i truly do.

[Riki]

I've felt like I was running into a brick wall ever since I moved from the children's hospital to the adult hospital.  The change was like night and day.  For me, I think that's part of it, that I was a kid on dialysis, and had had one transplant before I got there. It seems they team up on anyone who's lost a kidney.  My dad's friend got his kidney in 1979.  The fact that it lasted him 20+ years should be a testament to him, and he was treated like crap too.

[fearless]

this makes me angry and a little sick

[Riki]

it's frustrating.. it's why I want to find a live donor and be done with it

[fearless]

I hope that you do Riki.  Good night now!

"don't let the bullocks get you down"

[Riki]

After reading through this thread again, I feel a need to clarify a few things.

My dialysis unit has nothing to do with any of this.  They know of it only because the nurse who works in the nephrologist's office used to be a dialysis nurse.  They all know each other.

I live in a small province.  We have only 140,000 people, which is less than most large cities, so none of the transplantation is done here.  We must go to a different province to be transplanted.  The people there don't see us at all anymore, not since we had a nephrologist come to the province a few years ago.  Before that, someone from the transplant team saw us in clinic (there's, not ours) every 3 months.  I haven't been to a clinic in at least 2 years.

As it is, I have an appointment for the ultrasound on Thursday.  If it weren't for my mother, I'd probably still be waiting.  She called the radiology department at the hospital to check on the status and it really hadn't gone anywhere.  They had considered those (mine and the other fellow's) ultrasounds to be non life threatening, so they were pretty much sitting on them.  It coulld have been months before I ever got a call for an appointment.  When Mom explained to them that until the ultrasound was done, I was off the transplant list, they made an appointment for me right away.  I don't know about the other guy.  I haven't seen him since Friday.  He works full time, so they pretty much just fit him in when they can, and go by his schedule.

[fearless]

well, I think that does explain some things.  But i don't like that it seems like some people are working against you (or maybe just not working for you as they should)  I so hope that you will find a kidney donor Riki. 

[Riki]

It would fix so many problems, Fearless.  I think I'm going to go through all my cousins again after Christmas.  It's been 2 years since I last asked them, so maybe one or two of them will be more receptive this time.

[kellyt]

When I was first testing to get on "the list" I was put "on hold" until I got my dental work done.  They said that while I was "on hold" I was accruiing time, but I would not be eligible for "the call".    But I don't know if this is the same as what you are talking about.    I heard a 3rd kidney would go just below the ribcage (in the middle), is that correct?

[Riki]

I've no idea.  The two I have now are in my lower abdomen, just above the pelvis

[kellyt]

Well, good luck.   I hope you get that 3rd kidney!   And I hope they're not just running you in circles.  It does seem silly after all this time.   

[Riki]

I don't have the best relationship with some of the doctors on the transplant team.  I know that at least one of them tried to keep me off the list after my last kidney failed.  It didn't work

We were told it'll be another 2 weeks before we hear anything.  Mom said that she'll be calling them every day to see if I'm back on the list

I kinda feel bad for the other guy who's going through this too.  He doesn't have an appointment till next week.  I guess his mother isn't as scary as mine.. *LOL*

[kellyt]

God Bless scarey moms.   

[Riki]

God Bless scarey moms.   

I don't think I would have gotten half as far as I had without a mom who breathes a little fire from time to time.  I don't think I would have finished high school otherwise

It also helps with getting things done, to have someone who's not afraid of confrontation or to throw around a few idle threats.. *LOL*