What NOT to do or say at the Transplant Evaluation!

[shorty590000]

Moose Mom,, thank u for heart-felt input... As far as what cause my kidney failure... it was septic shock.. a fungus that got into my bloodstream... from a dirty needle,, they believe... I was not expected to make it, and had I been older they think I was have died.. But I am 40 and they said my strenth and age is what pulled me through.. I just asked the neph about future prognosis.. and you are right.. He is not willing to speculate... He does not believe I will regain more than 20% function.. He says this is due to scar tissue building up...I am trying to follow the diet, take my binders, just recently started Procrit.. Hg very low... Goodness knows I need to be exercising or walking or something.. but have not escalated to that yet.. and the "what ifs" are driving me crazy.. trust me... I have tried to find more info on septic shock and kidney failure and prognosis but the info is just not out there. My neph says this is VERY common.. but the internet says it really is not .. if u come across any info, Pls pass it along... again, thank you so much for your input.. I do hope to one day be a good enough candidate for a transplant. .wonder if having a living donor would make any difference..

[MooseMom]

OK, I'm going to guess again...I think having a living donor may well make a difference, but again, it may depend upon the tx center.

If I find anything about septic shock and kidney failure, I'll certainly post the link(s).

Keep me updated, OK?  How often do you see your neph?  How often do you have labs done?  Have you seen a noticeable decrease in function over time?

[flanbyjan]

Hey I'm a newbie, caregiver for my husband on home dialysis.  He is going for a transplant consult this week and the hospital said he has to bring someone with him.  I have to work and he doesn't want me take another day off!!!  He said, what can they do??  Throw me out???  I'll just tell them you're parking the car....

still parking...
she'll be here any minute...
went to get coffee...
in the bathroom...

any experience with this??  What if he goes alone??

[okarol]

Hey I'm a newbie, caregiver for my husband on home dialysis.  He is going for a transplant consult this week and the hospital said he has to bring someone with him.  I have to work and he doesn't want me take another day off!!!  He said, what can they do??  Throw me out???  I'll just tell them you're parking the car....

still parking...
she'll be here any minute...
went to get coffee...
in the bathroom...

any experience with this??  What if he goes alone??

They want to be sure the patient will have support at home after the surgery, and that's part of the process.

[bleija]

omg this is good lol

Hey I'm a newbie, caregiver for my husband on home dialysis.  He is going for a transplant consult this week and the hospital said he has to bring someone with him.  I have to work and he doesn't want me take another day off!!!  He said, what can they do??  Throw me out???  I'll just tell them you're parking the car....

still parking...
she'll be here any minute...
went to get coffee...
in the bathroom...

any experience with this??  What if he goes alone??

[Deanne]

Hey I'm a newbie, caregiver for my husband on home dialysis.  He is going for a transplant consult this week and the hospital said he has to bring someone with him.  I have to work and he doesn't want me take another day off!!!  He said, what can they do??  Throw me out???

any experience with this??  What if he goes alone??

Unfortunately, the answer to "Throw me out???" is "Yes, they will throw him out." The first transplant center I talked to wouldn't see me without assurance that I would have a "caregiver" there with me, so a friend met me there. I arrived first and they wouldn't take me in until my friend arrived. I ended up "firing" this center because they said they would refuse to see me at any appointment without a caregiver.

[Rerun]

Not a good idea to tell them you have an "invisible friend". 

                               

[cattlekid]

I am so happy that my current transplant center did not require that a second person be there for the initial evaluation.  I don't want anyone wasting their time at the initital appointments....I will need them enough afterwards!  As long as you can provide documentation that you have a plan in place, one would think that that would be enough.

Anyone know if U of Wisconsin requires a second person for their appointments?  I will be starting the eval process there shortly.

[MooseMom]

Anyone know if U of Wisconsin requires a second person for their appointments?  I will be starting the eval process there shortly.

I'm wondering the same as I have an appt with them on 23 May.  By that time, I will have already accrued almost 2 years on the UNOS list and really don't need my husband to be there with me.  He is going to drive me up there, so he will be in da house, so to speak, but I'd really prefer him to wait outside or go back to the hotel because I don't want to have to worry about him getting bored.  I've been through these initial pre-eval appts before, and they are LONG. 

I did get a letter from Madison giving me a list of things to bring to the appt, and one of them was "a companion" as there will be a lot of information to take in, but I don't know if it is a REQUIREMENT.

Cattlekid, who is your coordinator up there?  Have you been assigned one yet? 

[cattlekid]

So far, it's Joan Bradley-Bartleson.  I have to admit, I dragged my feet on the paperwork.  I got it back in November and was told there was no way I was going to see a surgeon before the first of the year.  So I didn't bother sending the paperwork in over the holidays.  Fast forward to now and I just got the paperwork turned in last week.     So I don't even have a first meeting set up yet. 

By the time I get up there and get approved, I'm sure I'll have a whole year on the UNOS list already accrued.  I've been on the list here in Chicago since June 15th of last year. 

Anyone know if U of Wisconsin requires a second person for their appointments?  I will be starting the eval process there shortly.

I'm wondering the same as I have an appt with them on 23 May.  By that time, I will have already accrued almost 2 years on the UNOS list and really don't need my husband to be there with me.  He is going to drive me up there, so he will be in da house, so to speak, but I'd really prefer him to wait outside or go back to the hotel because I don't want to have to worry about him getting bored.  I've been through these initial pre-eval appts before, and they are LONG. 

I did get a letter from Madison giving me a list of things to bring to the appt, and one of them was "a companion" as there will be a lot of information to take in, but I don't know if it is a REQUIREMENT.

Cattlekid, who is your coordinator up there?  Have you been assigned one yet?

[MooseMom]

Cattlekid, JBB is my coordinator, too.  So far, she has been efficient and has quickly responded to a couple of questions I emailed to her.  Maybe we can talk more about it at our meetup in a couple of weeks.

[paris]

Mine required a companion. I was glad in the end, because a second pair of ears and someone taking notes is very helpful.  It also helped educate the person with me.   But, I wanted this so much that if they had told me to stand on my head and twirl a baton, I would have said, of course I will!  It is the only process that I complied with completely.  They made the rules and I wanted a kidney, so I played by their rules.  I am very independent and like to do everything by myself,  but for once, I listened and did what they told me.    Good luck.

[cariad]

I don't think Madison requires that you bring anyone, but it's been so long I may just not remember. I cannot even recall if G came to that eval or not, I think he actually did and it was an enormous waste of his time and holiday. Two of the five hospitals where I had evals did require a support person. I ignored that and no one brought it up. Deanne, that is madness that that hospital demanded that you have someone at every visit. What a pack of control freaks.

Northwestern was one that definitely said in their info packet that you should bring a support person along. I think they even reiterated this over the phone, but again, no one said a word when I arrived solo. The mood I was in for some of these evals, I think I would have burnt the place down if they tried to tell me that I had to come back another day because I did not have anyone along with me.

That being said, Jan, unless your husband really knows what he's talking about when it comes to transplant, I would not waste time playing games with these people. They are pretty famous for holding looooooong grudges. I have read about centres denying people solely on the basis of not bringing a support person. If your husband can hold his own when discussing transplant with nephrologists, then he might get away with it, or they might not take that rule that seriously, or they may be so scattered (Northwestern) that no two people really have the same idea of what the rules are supposed to be. If you can spare the day off, I would probably just go. I do love the image of him perpetually stalling, like you're some Snuffalupugus or something. (remember when he used to be the friend that only Big Bird saw...? Sorry. I have young kids and am forced to revisit childhood on a regular basis.)

[MooseMom]

Thanks for that, Cariad.  My husband wants to chauffer me up to Madison, so he'll be around anyway, and I plan to just ask them what they want me to do with him!  My husband, bless his heart, wants to be supportive, but he really has no interest in the general subject whereas I find it all rather fascinating and am prone to asking questions that might be a bit too "profound", like how has U of W  incorporated the new knowledge about suPAR into their post tx protocol for fsgs patients?  I don't think such a question would occur to my husband.  LOL!  His is a very stressful job, and he has not been getting enough sleep lately, and I am truly concerned that he might fall asleep during the appt.  At my last appt at Rush, I returned to the waiting room to find him snoring away.

[cariad]

OK, I had to look up SuPAR because I thought it was a gene, but no, it is a 'circulating factor' but I think it will have to eventually be linked to a gene or set of genes. (Maybe they already have suspects).

Anyhow, it seems that pre-transplant might offer more benefit, since by the time it gets to recurrence of fsgs in transplant, you are looking at salvage therapy, aren't you? Would you be willing to undergo some fairly intense pre-transplant treatments based on their initial knowledge of this? I saw plasmaphereisis and monoclonal anitbody therapy mentioned for pre-transplant. I don't know that I would bother based on the well-supported theory that if it takes until mid-life to pose a problem it probably won't recur quickly enough in the transplanted kidney to destroy it within your lifetime. I might suggest, based on my run-ins with these doctors, that you rephrase the question to be more open-ended: Have you made any changes to your post-transplant protocol..... etc. I only say this because if they have not altered their protocol at all, your question will likely serve to put them on the defensive. I've mentioned how much I hate that hospital, and it's all down to the obnoxious coordinator (she's gone now) and the doctors who seemed to want to bully patients into believing that they were the only ones who could help you. It was my belief that I actually wanted something that they were unable to give me that led to that conversation with the one doctor who tried to convince me I was about to die, die, die. It was incredibly traumatizing, probably because he seemed to enjoy telling me this.

At any rate, with most transplant hospitals you are discharged to your own nephrologist quite quickly after the fact, so they will probably push post-transplant responsibility off on him, but I am eager to hear their answer. Discharging after transplant was definitely a big issue with Madison because I did not have my own nephrologist when I first went to see them, and they kept stressing that they were not my doctors and that I needed to sort this out. Oh, and I remember the name of your coordinator from a letter I was sent probably two years ago, telling me that she was my new coordinator. That was the other creepy thing about Madison (the memories are flooding back!) they would send me letters out of the clear blue telling me that I MUST make an appointment with them or in one icky episode, that the doctors were worried about me because I was pregnant. (WHO TOLD THEM?! I never did learn!) They don't seem to understand that they've been let go. I suspect they only have the one coordinator for the entire program.

In terms of what not to say at an eval, I'm not sure there is *anything* you could say to turn off Madison (if there is, please share so I can say it to them) other than "I don't have any way to pay for this." They wanted to perform the transplant when I had a GFR of 30, proving that one need not even truly be in ESRF for them to be perfectly happy to cut you open and collect their Medicare compensation. Sorry, I just really hate that place. I hope to hear that they've improved beyond anyone's expectations. Please let me know how it goes. Best of luck to all who are Madison-bound.

[MooseMom]

Cariad, yes, I agree that some sort of pre-tx protocol where the goal is to diminish the level of suPar would be preferable, but the research is not there yet, and for those of us who are already on the wait list, it's probably too late, anyway, unless it is determined you have a particularly aggressive form of fsgs, which I apparently do not.  Mine is slow and plodding.  It seems that up to now, most of the research in this area is going to post tx allograft conservation, but I don't see why there would be a vast difference between post and pre-tx procedures, but then again, I'm no nephrologist.

For me personally, I did ask the tx surgeon at Rush about recurrence of fsgs in a new kidney, and he gave me the standard answer, that if I was slow to develop it pre-tx, then the same would probably hold true post tx.  For this reason, I don't really think that I'd be willing to undergo intensive pre-tx treatment as there really is not much to salvage.  I'd rather not prolong the inevitable if I don't have to.

I will be very careful about not phrasing questions that might put Madison on the defensive.  Thanks so much for that warning.  I don't want to go into my appt with any preconceived ideas, but I do appreciate being given the heads up.  If you hate them so much, there must be a good reason for that, so I will be on my guard.

Now, I am very interested in your statement that most transplant hospitals discharge you to your own nephrologist as that is not the case at Rush.  I happen to like my neph, so when I asked Rush when I would start seeing my own neph again post tx, I was taken aback when they replied, "Oh, probably never, although your particular neph does seem to like to keep tabs on his past patients."  If Madison is that bad, I'd be thrilled to be able to see my own neph, but to be fair, I don't know what his experience is in transplant nephrology.  Madison told me that he sends them a lot of his patients, so maybe there is a relationship there that I can rely upon.  I will certainly find out more about this.

Forewarned is forearmed, so again, thanks for the warnings.  I'd like to think that I am old enough that others' bullying tactics just make me giggle, but we are dealing with a life or death situation, so I'm not sure how much giggling will be involved.  I do know that they have an entire phalanx of coordinators now, so maybe my experience will be better than yours.  I'll be sure to let you know!

[cariad]

Huh! Northwestern was going to discharge me to my own nephrologist after the standard 3 months, it was only by luck of the trial that I never had to face trying to find that elusive Milwaukee nephrologist who was not a complete disgrace to the profession. That is very interesting that Rush does not do that. Your nephrologist sounds like one of the better ones out there. He seems to be keyed into getting the patient what she wants, rather than imposing his own agenda on you, and I have no doubt that you will get a transplant off the list very quickly in Madison.

Sorry for going off on a rant about Madison. I should really censor myself better, but there is something about that hospital that brings it all up again. That hospital had the doctor that basically told me that if I got into a clinical trial (which emotionally I saw as my only option) I would die of GVHD. He said this was especially the case because I had already had a transplant. I am angry at myself for believing him. It was only some 18 months later when I was so sick and so depressed that I decided 'to heck with it, if I die, that's fine, I have to take this chance' that I looked up the trial at Harvard and immediately learned that the first person they operated upon was also on her second transplant. That was well and truly the final straw and what made all of my bad experiences coalesce into this idea that they were really only out for themselves. Now, in the intervening years they did lose their Medicare certification and subsequently regain it, so they were obviously forced to take a long, hard look at their own practices and implement some changes. Definitely a great idea to try to clear your head off all of these different experiences (sorry again! ) and judge them on their current approach to your case. I suspect they are going to really, really want to be your transplant hospital as you are young and exceptionally well-educated on all of this, so one would hope that they at least have the sense to treat you with respect. Initially, I really liked them, but it was that one particular doctor and my coordinator (who as I've said is long gone) that really changed my view of them for life.

I hope to hear that you feel confident in them, and that your relationship with them as a pre-transplant patient is very brief indeed! I'll be following your story.

[paris]

MooseMom, I was released to my own nephrologist after 9 months.  Still see the surgeon once a year (so I have been back once-lol!) and now labs once a month locally, but sent to UNC, so they always are on top of my numbers.     And I have gotten the same answer regarding FSGS and a new kidney, so I am just counting on mine being very slow to progress this time too.  I was very surprised that the new one had FSGS 2 weeks post transplant.    There is always new things to learn and it seems that all centers do things "their" way.    I'll be so happy when you get the call and it is really your kidney. 

[MooseMom]

Cariad, no need to apologize.  I WANT to hear about your experiences, although I do recognize that you were a much more complicated patient than I am.  I don't have the whole clinical trial issue to contend with.  My case is pretty straight forward compared to the horrors you had to endure.

Paris, I, too, and rather astonished that fsgs has already returned to your new kidney.  However, you are right...as long as it is working well enough, then it's still a miracle!  Have your docs suggested doing anything to stop the reoccurrence, or are they just keeping an eye on things?

[CebuShan]

I have an appointment for initial eval at Madison on Sept. 28. My coordinator is Mary Shanahan.

Probably not a good idea to tell them the dog likes to supervise my home hemo, huh?   

[cattlekid]

I told the coordinator at Madison that I had a dog and they had NO problem with it, other than to tell me not to walk him for a while after my surgery because of the potential for pulling. 

I am so excited for you!  I believe you will find Madison to be friendly and efficient.   

I have an appointment for initial eval at Madison on Sept. 28. My coordinator is Mary Shanahan.

Probably not a good idea to tell them the dog likes to supervise my home hemo, huh?   

[Simon Dog]

There are only a few factors that are important:

1. Can you pay?
2. Are you medically a good prospect?
3. Are you someone they will expect will have proper support and follow instructions?
4. Can you continue to pay for the rejection meds?

#1 and #4 are probably the most important.

[AnnieB]

Do not tell them that your dream career is to be an infectious diseases doc

 

[AnnieB]

Do not tell them that your dream career is to be an infectious diseases doc

 

Now I am REALLY  because I just got an email today wanting to know if I am interested in a "Director-level Infection Prevention position...". Ahhhhhhh, think that may not be such a hot idea...........

[AnnieB]

...though I guess I could show up for work in a Biohazard suit.......