HIPPA and transplant center requirements

[Deanne]

I've already whined about my transplant center's requirement that I have someone with me for my first meeting with them and for each appointment for a month post-transplant. I'm really just not comfortable having someone there with me. Is it a HIPPA violation for them to require that I let them share my medical information with anyone? Isn't it within my rights to say I don't want this information shared / I don't want anyone in the room while you're discussing my medical needs? I feel like I'm stuck though. If I refuse, they refuse to list me, so I have to allow them to violate my right to privacy?

[jbeany]

Is it about making sure you have a support system, and not about the medical info?  I can see wanting to make sure you have transportation, since you aren't supposed to drive after the transplant.

On the other hand, there's nothing to say that the person you take can't be overwhelmed with an urgent need for something as soon as the nurse takes your blood pressure and abandons you in the exam room.  "Oh, I'm sure he'll be right back.  He had to have a smoke - go to the bathroom - get something for his low blood sugar -etc.  Let's just start without him."

I find smiling sweetly and doing exactly what I want is easier than fighting them head on over stupid things.

[Deanne]

They said they require that I have someone in the room with me / someone who can help me be responsible for my meds. It feels like they're claiming I won't be competant to make decisions and handle my medications for myself. I'm having a hissy-fit. I'm a very private person and don't want to be forced to have other people take care of me unless it's absolutely necessary, and I don't think it will be ncessary.

My friends are willing to step in and help - I just don't want them to be involved to the degree that the transplant center wants them involved. I was uncomfortable having a friend sit with me while I had to talk to the social worker and have the financial person ask me my approximate income level while she tried to figure out something about medicare.

I have long-term care insurance. I think I'll see if they'll cover things like this. I'd rather have a professional stranger there than a friend.

[cariad]

Which centre, if you don't mind my asking?

I went to 5 different evals from 2004-2010. I only had another person with me at one, and he stayed in the waiting area for most of the time, plus we're married, so that's different. If anything, I was constantly told that they only wanted to speak to ONE of us. (I went to his first eval, too.)

I think we are exactly alike in this, Deanne. The only person I would want there is my husband, and really, if I don't feel like having him there, then I don't invite him. No one said a word about my not having anyone with me. I think Northwestern said I had to have someone, but I just ignored them and it never came up. Some hospitals, though.... this is one of their silly games they play where they will read everything in the world into your coming alone. I would bring someone, ask them to bring a book, and tell the eval team that you do not want to have your friend there for any medical or financial talk. The social worker should respect your privacy, and the financial person has no business requiring someone else to be in the room.

Deanne, I don't know a lot about you, but please walk in there with confidence and a plan on how you want this eval to go. You will be responsible for them receiving some pretty serious money, and I would let them know what you expect from them and that if you cannot work with them, you will find someplace else that can cater to your sensibilities. I think the transplant team is primarily used to the shrinking violet type, and if you just calmly say "she's going to sit in the waiting room while we talk, out of respect for my privacy" they may be taken aback, but I really cannot even picture that they will argue with you. Grab the reigns early and direct these people - they will follow. Good luck.

[Deanne]

This is Legacy Good Sam. I'm kind of thinking about doing what you suggested. I'll play their game the best that I can until I get the transplant, but when I show up for my post-transplant appointments, refuse to allow my "caregiver" to come in with me. I don't think they'll take the kidney back at that point! I just think it's wrong / illegal for them to make such a demand. I also sent an email message to my long-term care insurance provider to see what their coverage is.

[Jie]

Why do you pick Legacy Good Sam? There is a much better center at Portland: OHSU. I tried to double list at Oregon and OHSU does not allow multiple list, so I tried Legacy. They requires me and my partner to spend two days to fly there only to see the social worker for one hour. It costs about $2000 for two tickets. And then we have to make another trip to do other evaluations. I appealed this rule to all levels and they cannot give out any good reasons to me for such rules but they would not change. At the end, I never went there. I went to OHSU alone for transplant evaluation and they did not ask me why my partner was there, so it must be not a strict requirement for OHSU.

The graft survival rates are much higher at OHSU than Legacy. At fact, Legacy has the worst graft survival rates in all Northwest areas.  At first, I thought Legacy used marginal kidneys because the waiting times are shorter at Legacy than OHSU. However, the graft survival rates are not good for living donor transplants, too. After dealing with different levels of staff at Legacy, I would not think going there any more.

[paris]

Deanne, I have always gone to everything alone.  But, the transplant thing was a different story.  After transplant, you are in the center frequently. Those first weeks are a little overwhelming.  You are hearing your labs results, etc three times a week.  You are on all kinds of new meds that you are getting use to. Your body is busy recovering from major surgery.  You are tired and sore. Having someone with you, taking notes, can be a real lifesaver.  You dosages change frequently, there is something different happening every week.  Now that we are past that phase, I go in by myself.  You want to focus on the conversation with the surgeon, not be taking notes while he is talking.  You are anxious to hear the lab results, how the incision is healing, what you are or are not allowed to do at that point.   There is really a lot going on in a short amount of time!  I realized last month that I couldn't remember if the team said 2 weeks or 3 weeks between labs!     (thank goodness my co-ordinator told me to email her anytime)

Of all the things the transplant center asks of us, this one didn't bother me.  Either my daughters or my husband went, but a good friend would have been great too.  Some days the news isn't the best and it might help to have another set of ears to hear what is going on.

Regarding meds -  it took a couple of months to remember that routine.  Dosages changed weekly, things were added, things taken away.  They don't think you can't do it; they just want you to have back up.  I still look at my list when I fill my pill box.    It is always good for someone else to know your pill routine, just in case you are too sick,etc.   You don't want to take any risks when you have gone this far.      And by the way -- I never was in a gown for any post appointments.  I always wore slacks, so the incision was easy for them to see and I never felt uncomfortable in front of others.  They were always discreet.     I am rambling ---- sorry!     

[Deanne]

Jie, Where did you get your information that OHSU is better than Good Sam? I had a link in the past that showed Good Sam actually had a slightly better survival rate than OHSU, but I can't find it out now. I'd like to look again. I talked to one other patient who was deciding where to go for her second transplant. Her first was done at OHSU many years ago and was beginning to fail. She told me that she also thought Good Sam was better and she was thinking about moving there from OHSU. I've been thinking about looking into OHSU more to see what their post-care criteria is like. Maybe it's a better fit for me.

Paris, I get it that I might not be fully plugged in right after my transplant, but realistically, my caregivers will have minimal responsibility. They won't be there when I'm taking my meds to make sure I'm taking the correct doses or the correct meds. My caregivers will consist of rotating friends and acquaintances, not one or two consistent people. Two are people from work who I don't know very well. One is a woman at the dog park who I talk to for about 5 minutes at a time a couple times a week. I'm hoping each of these will be able to take me once. I'll probably need to round up a couple more. None of these people will be sitting in my house with me to make sure I'm doing the right things at the right times. I imagine they'll pick me up at my door for my appointments and drop me off at the door when I get back home.

The woman who'll likely be the most consistent is in her mid 70s. She's  very caring and even offered me a kidney (the only person who's made that offer), but she says herself that she thinks her mental faculties are slipping. My younger friends who are more on top of things have jobs. They can't / wouldn't be willing to take off a half-day three times a week for a month. Their own jobs and incomes would be at risk.

This is the life of a single person and I'm fine with it. I'm not concerned about success. I'm not concerned that I won't take the correct meds or the correct doses of them. If I need help I'll find it, but that help doesn't include having people I hardly know sitting through my appointments with me. Putting youself in my place, can you imagine asking some almost-stranger to sit through your medical appointments? What good would that do for anyone?

[MooseMom]

I agree with cariad.  My transplant center doesn't require someone be with me for the pre-evals, so yours is just making up some arbitrary rule.  Find someone to accompany you but like cariad suggested, have them stay in the waiting room with a good book.  I would imagine that person would feel very uncomfortable being in the same room with you as you and the team are discussing your very personal medical and financial information; it's not fair on the person accompanying you to expect them to sit there through all of that.

I never had to really discuss any financial info, though.  I just gave them my insurance details, and they had their financial people contact the ins co to make sure I was covered.  After I had passed my medical exams, they called me and said they were satisfied that I had adequate insurance in place, and only THEN was I officially listed.

As for having someone with you at post-transplant appts, paris is right.  You may be in some discomfort and may not be able to concentrate.  It's not a matter of you being generally incapable of understanding what the doctors are telling you because you are stupid or something, rather, it's more of a matter of you possibly being distracted by pain, illness, recovery, fatigue, massive dosages of weird drugs.  It is so important to adhere strictly to your drug protocol in those important first few months, and distractions just cannot happen.  That said, I suppose you can always take some kind of recording device!

[cariad]

The woman who'll likely be the most consistent is in her mid 70s. She's  very caring and even offered me a kidney (the only person who's made that offer), but she says herself that she thinks her mental faculties are slipping. My younger friends who are more on top of things have jobs. They can't / wouldn't be willing to take off a half-day three times a week for a month. Their own jobs and incomes would be at risk.

This is the life of a single person and I'm fine with it. I'm not concerned about success. I'm not concerned that I won't take the correct meds or the correct doses of them. If I need help I'll find it, but that help doesn't include having people I hardly know sitting through my appointments with me. Putting youself in my place, can you imagine asking some almost-stranger to sit through your medical appointments? What good would that do for anyone?

Deanne, you are going to get through this just fine. The meds are not a big deal - they mostly fall into two camps, the immunosuppresants and the germ-killers. They will hand you a list with dosages and you can just take your time as you gather them all up. My hospital gave me a 7-day pill box, so I could just do this once a week. For most of my year on meds, I was taking only 4 different medications - immunosuppressants twice a day, an antacid twice a day, and an antibiotic and antiviral once a day.

I was asked for our salary point blank by the social worker, who then kept repeating the number as if she did not understand how this was possible. It was not a difficult number, nor an astonishingly high nor low number, she was just a twit. She also did not excuse herself when the surgeon walked in, which was gross and made me extremely tense. I am the same way - keep the acquaintances away from me, it just does not help, no matter how well meaning they may be. I had a wretchedly embarrassing incident happen after transplant, and thankfully I think our (male) support person, who is a much better friend of Gwyn's than mine, was not there. They are going to have questions that NO ONE outside of the medical field needs to hear the answer to, and medical people are hilarious in that they have universally lost that section of their brain that tells them You know, not everyone would want to discuss bowel habits and menstrual cycles in front of this third party. I'd best be discreet. They will just shout it across the room, so I am totally with you on this, decide how you want this to happen and stand your ground.

After transplant, I needed people willing to shop for me, people to help me by pushing a wheelchair down to the taxi rank, people to fetch the basin when I needed to upchuck, and most important, people to watch my kids. I did not need help processing any information, and the one time I was not sure I remembered something correctly, it was made worse by having my husband tell me what he thought he heard. In the end I phoned the transplant desk - and that is something to keep in mind. Any questions and they are there 24 hours. I hope RightSide comments on this. I am curious how he managed his recovery with so little help.

[Deanne]

I know it'll work. I'm just annoyed and need to calm down before I say something to the transplant center that I'll regret. I'm not concerned about meds, recovery, or getting things taken care of around the house.

If memory becomes a problem during recovery there are ways to work with it. This is the age of technology. No one should have to rely on memory for things like this anymore. It's pretty easy to use a spreadsheet to list the meds, doses, dates, etc. while I'm sitting in the Dr's office. There are things like reminder bells to tell me to take the meds if necessary. I'm able to dial a phone to call and ask for clarifications. I trust myself more to remember anything that I'll ever trust someone else to remember anything for me anyway. I've been on several of the meds a few years ago already, so I'm familiar with some of the side effects

[MooseMom]

Exactly, Deanne.  Cariad didn't feel like she needed anyone, paris calls it a "lifesaver" to have someone accompany her after transplant.  Both managed to survive!  You will find a way to keep all the information at hand. 

Sometimes I think transplant centers make these rules just because they can.  They pretty much have you by the short and curlies, and they know it.  Some centers seem to delight in reminding you of that.

[tyefly]

I have been listed at OHSU for over a year now, but I am changing over to legacy because they are a memeber of the Alliance Paired Donation program.....OHSU is not planning on signing up for that program for another year or two.....  So if you have a donor who is not a match   OHSU  wont do any thing for you ... Legacy will.....   Waiting list on OHSU is 2 years and 7 months....Legacy waiting list is 12 months....   

I had to come with a partner too.... didnt have a choice..... but I dont care ..... I want a kidney and I have a un match donor.......  OHSU  is very slow.....  Everyone who is on Kaiser insurance has to go to OHSU  cause of a contract they have with them.....  I have Kaiser insurance but I got a exception because I have a live donor....
   there both good hospitals.......

[Jie]

.....   Waiting list on OHSU is 2 years and 7 months....Legacy waiting list is 12 months....   

When I evaluated Legacy and OHSU, these waiting times were always in my mind. Both OHSU and Legacy are on the same waiting list, so if both centers used the same criteria to accept the kidneys, then patients from both centers should have similar waiting times. The more likely case is that OHSU is picky to accept kidneys, while Legacy accepts almost all kidneys. 

The survival data I used were from SRTR reports in the early fall 2008. Both centers use the same approach to do kidney transplants. The medical director of Legacy transplant program is the retired professor from OHSU. OHSU is among the centers nationwide with the best survival rates. When I was there to do evaluation, OHSU's answer to the pair exchange program is that our waiting times are not too long so it does not need pair exchange program. I saw the recent data, and the waiting times at Oregon for some blood type is not short any more, especially blood type B.

[Deanne]

Can I have my own message board section for ranting? Good Sam called to schedule my next appointment. They want me to bring someone with me again. I told them I object to bringing someone along for each appointment due to privacy issues. They said I can discuss it at that appontment with the nurse they're going to assign me. I made the appointment, then immediately called to leave a message for my neph to ask about going to OHSU instead.

[Deanne]

Jie, I sent you a PM about your OHSU experiences. My neph said she'll transfer me there if I'd like. I need to see if my insurance will cover me there.

[Jie]

Deanne,

I replied to your PM. The big disagreement between me and Legacy is not the requirement of a partner. It is the multiple visits/appointments. I had evaluations at two different centers and they all scheduled my appointments together so that I did not need to make more than one trip. If more tests are needed, these two centers will schedule the tests at my city. Legacy thinks that multiple visits and appointments are their protocol and does not want to make this change for me. Everyone at my dialysis clinic think this is a nonsense protocol.

[Deanne]

Thank you Jie!

It seems Good Sam has several nonsense protocols. When I talked to my neph yesterday about the possibility of transferring to OHSU, she hinted that I might not be the first to make such a request. I need to ask her more about it. Why does she refer to Good Sam first instead of offering the choice up-front? Hopefully I'll sleep better tonight. I've been so stressed out about this that it's been keeping me up at night.