Legacy Hospital in Portland, Oregon

[midges]

I'm considering getting a referral to Legacy Hospital in Portland, Oregon for transplant, but before I do I would like to talk with some folks who have already gone through the process of getting listed there.
     A little background: I have been trying to get listed at OHSU since August of this year. The coordinator there has been condescending, is slow to return calls and still won't let me make an appointment to do preliminary evaluation at their clinic. She keeps telling me that there are all these tasks to complete and just when I finish one and ask for an appointment, she comes up with more stuff for me to do. I was recently cleared for transplant in another state, and that was not nearly as complicated as it is here. I know every transplant center is different, but I have been butting heads with this coordinator from the start. I really just want to find a coordinator that is an ally and not an adversary in getting me to transplant.
     I talked to my neph and he said he's heard from lots of patients that OHSU gives patients a hard time and perhaps I'd be better off at Legacy. I just want to make sure I'm not jumping out of the frying pan and into the fire. I'm looking for folks who are willing to share their experience with Legacy so that I can make an informed decision. I would be interested in talking to people both pre- and post-transplant to find out how helpful you found the staff, how your recovery went, any info you'd be willing to share about their protocols, etc. Thanks!

[Deanne]

I went to OHSU after I had bad luck at Legacy. I have experienced what you talk about at OHSU with finishing one task, only to be told that now they want something else. It was incredibly frustrating! I finally made it through though and I don't think I'll have any more issues with it before transplant. I had some trouble with a condescending coordinator, too. I felt like I should kiss her feet on those rare instances when she returned a phone call. I just stayed calm and polite though, and I think it made her a bit more responsive. It's hard having a limited number of choices. If you have someone who can go with you to EVERY appointment at Legacy, it might be an option for you. They refused to let me schedule appointments unless I had a confirmed "caregiver" to come to every appointment with me.

[midges]

Deanne, what were the difficulties that you had at Legacy? Did you actually find it to be more difficult than OHSU? How long did you try getting listed at Legacy before you gave up? How long did it take you to finally get listed at OHSU?

[Deanne]

 I only made it through the introductory appointment at Legacy. I met with the finance person, social worker and coordinator. I had to bring a friend with me for it. They accepted me to begin testing at that point, but when I called to schedule a time to begin the tests they refused me because I objected to bringing someone with me to every appointment. I was incredibly upset and thought it meant I'd probably not be able to get a transplant just because I'm single.

OHSU wanted me to bring someone for their training session - about two hours. Since then they've only asked a couple of times if my care plan is still in place. I think I was referred to OHSU in March or April and I was approved to be listed in September, but then they decided they wanted my gallbladder removed due to polyps in it, so I was inactive for a month or so in January 2012. I had to retest starting in June of 2013 since it had been 2 years from the time of my first tests. I ended up on inactive status July - November. My TB test showed "latent" TB, which means my blood test shows the bacteria, but I have no other signs of it, so they think I was exposed at some point during the last 2 years. They put me on inactive status until they had confirmation I started treatment for it. I couldn't tolerate the treatment at the first attempt so I chose to start dialysis and try again, so more delays getting set up on PD.

Then when I thought everything was done and I called to ask to be reactivated, the decided they wanted another opinion on my pancreas because two years ago they saw cysts in it and the cysts were still there in the CT scan in June. I was angry that they waited until now to tell me about it, after I'd need on hold for nearly four months and could have completed whatever tests they wanted during that down-time. The doctor they wanted me to see wasn't even available for about another month after that. Luckily I was able to find someone else to review my file and do an MRI within a couple of days. I still had to wait a couple more weeks after that to go through the OHSU approval process again before they would reactivated me.

I've never met my coordinator there in person. I don't care much about that, but she shows a definite disinterest in her patients. It always seemed like I was bothering her if I called, not that she ever answered the phone. I always got voicemail and it would take at least a couple days before she called back.

Still better than Legacy for me, considering Legacy wouldn't even let me schedule an appointment without a keeper.