How long did you wait on the waiting list?

[miket]

Hey guys I haven't been on dialysis very long and it well its the easier kind, PD, I've been on it for almost a year. I live in Portland, Oregon and was wondering if any of you on here chose Legacy over OHSU? I am probably gonna change since my Mom is willing to do the whole chain donation. I just don't want her to get hurt in the operation, but I sure would love to have a kidney. Anyways how long did you have to wait for yours?

MikeT.

[Brightsky69]

They told me I would have to wait 5 to 7 years for a kidney on the list. I actually got one after a 2 year wait.

[Deanne]

I'm going through the process with OHSU now. I started at Legacy and switched because I'm not comfortable with Legacy's policies. The waiting list in Oregon is supposedly about 2 years. Good luck to you!

[miket]

Whats up with Legacy's policy?

[texasstyle]

I just met a women last week who got a TP in just under 4years.

[Deanne]

Legacy's policy is probably fine for married people, but it's a problem for me as a single person. They require a "caregiver" to attend every appointment and sit through the appointment with the patient. I made it through the first appointment with a friend and almost had panic attacks afterward at the lack of privacy at having them ask me questions about my finances and medical history in front of someone for whom it's none of her business. I felt blindsided.

OHSU is asking me to have someone come with me for training, too, but only for a couple of hours. My appointment isn't until next month, so I can't answer yet as to whether it'll be the same kind of experience.

[carol1987]

I was on the waitlist for a deceased Donor for almost two years , while having family tested .
 DH could not give to me so we went with the chain option. My transplant coordination tells us we were on the chain transplant list and got a "hit" within hours. We would have been way down on a chain to be done within a few weeks.  That chain fell thru due to a donor changing his mind.  Within about 2 weeks we were in another chain and I was the first in the chain to get a kidney from an altruistic donor 1/6/11.
I am a HUGE fan of the Chain transplant option 

DH donated on my behalf and both he and my donor are doing fantastic...

[*kana*]

My sister was on the list and got a kidney within 4mths.  She has very high antibodies, O+ and wasn't on D yet. 
Me on the other hand, have been on the list for 3 years and starting to think that I don't even want a transplant.  I have low antibodies and O+ and they told me that the wait is 5-7 years. 

[tyefly]

Legacy's policy is probably fine for married people, but it's a problem for me as a single person. They require a "caregiver" to attend every appointment and sit through the appointment with the patient. I made it through the first appointment with a friend and almost had panic attacks afterward at the lack of privacy at having them ask me questions about my finances and medical history in front of someone for whom it's none of her business. I felt blindsided.

OHSU is asking me to have someone come with me for training, too, but only for a couple of hours. My appointment isn't until next month, so I can't answer yet as to whether it'll be the same kind of experience.

Yes I am also findiing the same at legacy....  I am switching from OHSU to legacy right now.....  I have been on the list at OHSU for two years...and I had to bring someone with me to every appt at OHSU...they call it training...  its really just telling you what you have to do when getting a transplant.... anyway....I think they all want some kind of care partner with you.....  I am independant and hate to take people with me .... I self cannulate and do all of my dialysis myself......  I really dont need anyone to help.... I do have people to help...but what are they going to do that I cant do....Seems like after transplant   people are up and running after a couple of days....  all this care partner stuff sure is a lot of fluff...... but I play the game..... I want a kidney....LOL

[willowtreewren]

My husband waited for over 2.5 years for a kidney.

I never went with him to any of the visits, though, except when I was getting tested as a donor.

Aleta

[Jie]

Here are the most recent reports for Legacy and OHSU:

http://www.srtr.org/csr/current/Centers/TransplantCenters_New201012x.aspx?organcode=KI

Even though Legacy still has the worst results among all centers in the Northwest, it has improved a lot from three years ago. 

[huldafolk]

I live in Canada.  the wait list is 7+ years. I have been on HemoD for 7.5 years and no transplant yet.  Was called twice about a year ago , but both fell through.