Impending TX evaluation - various questions

[MrNaturalAZ]

At my last nephrologist appointment, one of the nephs told me that he would try to get me a transplant evaluation. He said that he's on the TX committee for several programs, and while most of them don't like to take Medicare-only patients, he'd put in a good word and see what he could do. While I was a bit surprised (prior to that time, we've had no discussion of TX nor even D) and rather pleased, I didn't really know what to expect. He also told me that, in his estimation, I'll almost certainly need some sort of RRT before the end of the year (FWIW, my eGFR has been fluctuating in the 15-20 range, creatinine 3.5-4.0). I'm not sure if he's hoping for a pre-emptive transplant, or this is just the order things are usually done in.

Anyhow, fast-forward a month to last week - I get a call from Mayo Clinic (based on their reputation, they'd probably be my first choice) to set up a transplant evaluation!  The call was mostly a lot of questions about my basic health history. And  I've been almost unable to think clearly since. Of course now I have a ton of questions, so I will try to make some sense here and hopefully be able to get some information from those who have gone before me.

First off - has anyone else here have recent experience with the transplant program at Mayo in Phoenix?

And a general question. I assume the evaluation is primarily to determine my medical suitability to receive a transplanted organ - general health, risks, compatibility metrics, etc. That said, am I also being "evaluated" for my worthiness? will they be critiquing non-medically-significant lifestyle choices, personality, appearance, etc? I imagine they also want to feel satisfied that I'll be capable of the necessary responsibility and compliance, so I expect some sort of personality or psychological component to the evaluation, but is it going to end up more like a job interview or popularity contest than a medical evaluation?

What sorts of tests and questions can I expect? Especially, what sorts of things will I be surprised by - things that they'll want to know or test that I wouldn't be expecting?

Are the results usually "pass/fail"? In other words, accepted or not, and if not, I just go somewhere else and start from scratch? Or, if I don't meet the criteria, but the deficiency is something that can be corrected, will I have the opportunity to do so?

Any obvious disqualifications? Things that will absolutely prevent me from ever getting a transplant?

At this point, the ball's in my court. I need to get a colonoscopy before things can move along. I'm told it's required for anyone over 50. I'm sure I'll have more questions; I'll post again to this thread as I think of them, or as other people's answers prompt more questions from me (as I'm sure they will).

Oh... and maybe a dumb question, but.... is there any reason why one would not want to have a transplant if given the opportunity? Has anyone here had the option, but decided they'd rather start/stay on dialysis?





EDITED:  Revised 3 exact posts to just one - Rerun, ADMIN.

[Rerun]

Yes it will be quite a process.  Lots of tests.  Do you want a transplant prior to starting dialysis?

[MrNaturalAZ]

(sorry about the multiple posts - it seemed not to be working from my end for some reason - thanx for fixing it.)

Do you want a transplant prior to starting dialysis?

I don't know, really. Is there any reason I wouldn't? OTOH, if I'm going to need something by the end of the year, how likely would it be that I'd actually get a transplant by then (unless I already have a potential compatible live donor)? I'm thinking there's a good likelihood I'll end up on dialysis for at least a while. Or not? How common are pre-emptive transplants? I read/hear of people waiting for years for a kidney.

[Rerun]

Well, it looks like you will need one down the road and if they can get you one before the hassle of dialysis that would be good.  It is just all the tests they make you go through and then the next year you have more of the same tests.  Each test gets them a payment.  So just question each test and  good luck.

There are others on this site who can give you better information then me.  They have had preemptive transplants. 

I got my transplant in 1987 and it lasted 17 years.  It just wasn't as compacted back then and I was younger.  HAHA  Now I don't put up with ANY of their crap.  So for thinking about doing a second transplant and they wanted to do a "heart Cath" ...  for no good reason....  I said no. 

[justagirl2325]

I'm Canadian so our experience is different but my husband has just finished the TX evaluations, it took three years to get him listed in Canada.  There were so many delays in the beginning as we didn't realize nothing would be done unless we pushed everyone, then there were medical delays from his health but finally listed.

We were also told that he would have to see a social worker and answer questions but it was very informal.  They basically just asked him about his life; what does he do now, before, will do after transplant, what does he miss, smoke, drink etc. 

You can read his story in the transplant section as he is going for a kidney and a pancreas transplant. 

My advice is to get listed as soon as you can.

[KarenInWA]

One thing to keep in mind is this - once you're transplanted, sun protection is going to be of the utmost importance. With the meds you have to take, you are at high risk of skin cancer. Living in AZ means you'll really have to take precautions. Of course, I come from the Seattle area, where we have a higher rate of skin cancer than most, because we don't know how to react to the sun 

KarenInWA

[cattlekid]

As much as we might like to believe otherwise, to me there was a "worthiness" component to the evaluation.  The first of course, will be the financial worthiness.  The transplant team will make sure that you are financially capable of taking care of your transplant.  As we all know, in the US you qualify for Medicare for only 36 months post-transplant unless you qualify for reasons other than ESRD.  So your team will want to know that you will have a financial means of paying for your anti-rejection drugs after Medicare ends. 

Secondly, there *is* a psychological/social component to the evaluation.  You will most likely have to have someone come with you to the evaluation as a "care partner".  At my evaluation, the social worker spoke to both my husband (my "care partner") and I separately.  I was doing home hemo at the time and my psychological evaluation lasted about three minutes.  In the words of the social worker, if I had the gumption and organization to do home hemo, she had no issues with me being compliant with the requirements for post-transplant care. 

To be honest, the medical portion of the evaluation wasn't that long.  I started with Northwestern in Chicago and all we did was have short exam plus a review of my medical records.  Then they handed me a list of tests and told me that I had to have them all completed within 6 months.  I started scheduling appointments from the parking lot after the evaluation and got them all done in the course of about eight weeks.  Once I switched centers to University of Wisconsin, they took all of the tests from Northwestern so I just had some blood work and the financial/social worker interviews.

And a general question. I assume the evaluation is primarily to determine my medical suitability to receive a transplanted organ - general health, risks, compatibility metrics, etc. That said, am I also being "evaluated" for my worthiness? will they be critiquing non-medically-significant lifestyle choices, personality, appearance, etc? I imagine they also want to feel satisfied that I'll be capable of the necessary responsibility and compliance, so I expect some sort of personality or psychological component to the evaluation, but is it going to end up more like a job interview or popularity contest than a medical evaluation?

What sorts of tests and questions can I expect? Especially, what sorts of things will I be surprised by - things that they'll want to know or test that I wouldn't be expecting?

[smartcookie]

Transplant is certainly a process.  I am in SC so most of my experience is with the Medical University of SC in Charleston.  In men over 50 they usually ask for colonoscopy, PSA blood test and cardiac testing.  Other basic tests include teeth cleaning, a physical by your primary physician, and any additional testing from problems found in the previous tests. 

There is a component of "worthiness."  They want to make sure you are going to take care of a kidney and not reject due to poor compliance.  In this aspect, they are not going to look so much at your personality, but that you have the capacity and drive to take your medications on time, come to all your appointments and a care partner to help you with this immediately after surgery since you may not be able to do that yourself.  They look for psychological triggers that could keep you from doing your best with your kidney, like psychosis, dementia, hallucinations, severe depression and anxiety.  If you have any mental illness, let them know the treatment you have completed and how you keep a check on it, like with medications or counseling.  Your appearance will not have much to do with it, unless you come in and haven't bathed for two months or something crazy like that. 

I wish you luck with your journey!!  I hope you get a preemptive transplant and never have to do dialysis!

[iolaire]

Any obvious disqualifications? Things that will absolutely prevent me from ever getting a transplant?

These days marijuana seems to be a major hang up for transplant teams.  From what I've read here its related to some sort of fungus.

cattlekid's outline is good

I've been listed fresh once and then transferred my time to another hospital.  In both there was a day of meetings of about 4 hours, plus lab work. The a scheduler scheduled all the tests I needed over a few days, very soon after the initial meeting.

I feel like you should know if you will have challenges getting listed, the interviews all related to the basic functions that would help identify if you would treat your kidney and body well and help it last.  i.e. do you have a method to pay for the transplant co-pays, and will you have insurance once Medicare ends, are you able to manage your medical conditions (including the social (i.e. can someone help you if you are bed ridden for six months) /mental part)?

The doctors comment about Medicare seems odd, unless you don't have a backup policy - if so the worry is how will you pay the 20% co-pay and how will you pay for the immunosuppressants once you move off of the dialysis related Medicare?  GW University Hospital claimed they love Medicare patients because of the bulk payments they get once the transplant happens.

I have healthy stable employed lifestyle with a wife and breezed through the process both times.  But I've read about people needing to address weight issues prior to listing, or getting heart issues fixed in advance.  I'd expect that active mental health issues would need to be worked on as well.

I expect if you were to get rejected they would provide you with some guidance of what you need to do to get accepted and would welcome you back once you addressed their concerns.  Plus likely you could try to find another local hospital that might overlook something the first hospital didn't like.

[smartcookie]

Speaking to why someone would not want a transplant, the most common answers I get is "I am too old," "I don't want surgery," and "I feel good on dialysis and don't want to mess that up."

[kickingandscreaming]

Speaking to why someone would not want a transplant, the most common answers I get is "I am too old," "I don't want surgery," and "I feel good on dialysis and don't want to mess that up."

Another reason is that you don't have a care partner and/or don't want to be taking anti-rejection meds for the rest of your life.

[MrNaturalAZ]

Wow... it's been a while. I apologise for leaving folks hanging, as it were, and not at least following up with thanks for the advice and comments so far. It so happens that I've had a sort-of perfect storm of (unrelated) medical events, which has necessitated pushing back my evaluation. But things are finally moving along; my first appointment is set for next Wednesday. I'm excited and nervous. And it doesn't help that it's two hours away and an early AM appointment, meaning I'll be having to be up and on the road before it's even light out.

Another reason is that you don't have a care partner and/or don't want to be taking anti-rejection meds for the rest of your life.

I am single and live alone, which could complicate things, but I do have a close friend who has agreed to be my care partner (caretaker?) during my recovery. Presumably that commitment will be sufficient for the transplant team, as long as they know someone will be with me for however long it takes post-op until I am able to fend for myself again.

Your appearance will not have much to do with it, unless you come in and haven't bathed for two months or something crazy like that.

Well, "something crazy" might be in the eye/mind of the beholder. I am a bit concerned on this point. I don't wear shoes (don't even own any) - I am always barefooted - primarily for religious reasons but also health and comfort (does wonders for posture and back pain, I've learned). Unfortunately, in modern society, footwear is understood to be a mandatory part of the "uniform" and public barefootedness is an unspoken taboo in the minds of many. And if that's not unusual enough, I also don't wear trousers, opting instead for kilts as a matter of style, comfort, and practicality.

Part of me wonders if this isn't important enough that I should go against my own beliefs and principles and "dress the part" of a "normal" person so as to avoid the extra scrutiny. OTOH, I'd like to think that authenticity should count for something, and be worthy of some amount of respect. I would expect a reasonable discussion of bare feet presenting a possible risk of infection (in reality, it is nowhere near as risky as most people think, and to be honest, I've not had any problems so far in any medical environment beyond friendly curiosity) but I'd hope nobody there is narrow-minded enough to summarily reject me because of my beliefs and choice of attire.

I'm leaning towards going as myself, not putting on false airs, and putting my faith in others respecting my authenticity, but I'd be curious to read anyone else's opinon on the matter.

In other news, I've already had three offers from potential live donors. Of course at this point, they are no more than generous offers until/unless they are tested and determined to be eligible and a suitable match. But still it gives me hope and warm fuzzies all the same.

[kickingandscreaming]

I guess it depends on how much you want a kidney.  You are the petitioner here for a very rare and valuable "commodity."  There are enough potential reasons for rejection without the barefoot/kilt issue.  I'm all for "authenticity," but maybe it's not so wise in this instance.

[MooseMom]

I have to agree with k&s about the shoes.  When you go for your evaluation, there will be other patients at the clinic who may have already had a new transplant and will be newly immunosuppressed, so I'd think that you'd want to take their needs into consideration, particularly since you put a premium on being respected, you know?.  Going barefoot might be interpreted as being "selfish" rather than being "authentic".  Why take the risk?

A friend who has committed to looking after you post-op should be good enough.  They just want to know that you can get to your post-op appointments.  I'm assuming this friend is willing to drive you to your tx clinic each week for the first month or so?

My tx clinic is two hours away, and I've had many an early AM appointment.  The good thing is that we made great time because there was hardly any traffic!  Maybe this will be the case for you, too.

Good luck!!  I hope all goes well for you.  If you have any more questions before your appointment we might be able to answer for you, do let us know!  I'm excited for you! 

[iolaire]

Before debating it too much call the transplant people and be upfront about your religious needs and ask what kind of accommodation they can assist with and what accommodation they need from you.   

I don't think you need to hide it but rather work with them.

It sounds like you have had other medical issues. During that time were the medical teams able to accommodate you?  Nevermind you answered this already.  So that's good. Still I recommend talking about it in advance so they have some time to talk about you and get over the initial shock and so they know you are trying to help.   

[cattlekid]

I'm concerned about the no shoes thing, as well as your profile tag line of "tree hugging dirt worshipper".  Honestly, the dirt is most likely going to be an issue with your transplant team.  I would be extremely up front with them about your lifestyle.  I am saying this from the perspective that I was told I couldn't even mow my own lawn or pull weeds without a mask and gloves for at least a few months after transplant.  Your immune system will be forever changed and you will have to be on immunosuppressive medications for the rest of your life.  So there is the very real possibility that you could fall to an infection that you would have never affected you before.  The last thing I think you would want is to hide something about yourself in order to get a kidney, only to revert back to that behavior and lose the kidney. 

Just my rambling thoughts...

[MrNaturalAZ]

I guess it depends on how much you want a kidney.  You are the petitioner here for a very rare and valuable "commodity."  There are enough potential reasons for rejection without the barefoot/kilt issue.  I'm all for "authenticity," but maybe it's not so wise in this instance.

Perhaps, but then again, i expect I'll be interacting frequently with the team, over an extended period of time (months to years) - that would mean having to maintain such a charade, else undergo a sudden, drastic, and permanent lifestyle change. I am, of course, willing to make legitimate changes that are medically necessary, but I'm not sure i want to put on an act like one might for a job interview or meeting a new mate's parents.

I'd think that you'd want to take [other patients'] needs into consideration, particularly since you put a premium on being respected, you know?.  Going barefoot might be interpreted as being "selfish" rather than being "authentic".  Why take the risk?

People THINK bare feet are unsanitary, but it's a popular misconception. My bare feet are no more of a risk to other patients than shoes. Think about it for a moment: my feet touch the same surfaces, and therefore carry only the same potential germs and contaminants as do shoes. If anything, my feet are cleaner because they are washed far more frequently than most folks wash their shoes (which is rarely-to-never). Bare skin exhibits no special property that projects germs into the air. And feet that are always bare don't sweat nor stink, because they are not sealed up in shoes and socks retaining moisture and growing bacteria and fungi.

A friend who has committed to looking after you post-op should be good enough.  They just want to know that you can get to your post-op appointments.  I'm assuming this friend is willing to drive you to your tx clinic each week for the first month or so?

Yes. And shop and cook as well, if necessary.

My tx clinic is two hours away, and I've had many an early AM appointment.  The good thing is that we made great time because there was hardly any traffic!  Maybe this will be the case for you, too.

Yeah, that's the silver lining. And almost door-to-door freeway, so it'll be a pretty easy drive too.

Before debating it too much call the transplant people and be upfront about your religious needs and ask what kind of accommodation they can assist with and what accommodation they need from you.   

I don't think you need to hide it but rather work with them.

It sounds like you have had other medical issues. During that time were the medical teams able to accommodate you?  Nevermind you answered this already.  So that's good. Still I recommend talking about it in advance so they have some time to talk about you and get over the initial shock and so they know you are trying to help.   

Yep, no problems so far. with any medical staff. Good idea to reach out to them in advance, get in front of the situation to avoid any unexpected surprise. Of course things are moving quite quickly now. I dunno if they even have sat/sun hours for other than emergencies, so I really only have two days (mon and tue) before my first appointment.

I'm concerned about the no shoes thing, as well as your profile tag line of "tree hugging dirt worshipper".  Honestly, the dirt is most likely going to be an issue with your transplant team.  I would be extremely up front with them about your lifestyle.  I am saying this from the perspective that I was told I couldn't even mow my own lawn or pull weeds without a mask and gloves for at least a few months after transplant.  Your immune system will be forever changed and you will have to be on immunosuppressive medications for the rest of your life.  So there is the very real possibility that you could fall to an infection that you would have never affected you before.  The last thing I think you would want is to hide something about yourself in order to get a kidney, only to revert back to that behavior and lose the kidney.

Don't read too much into that tagline. It's a rather tongue-in-cheek reference to my Earth-centered belief system. The planet we inhabit is sacred space. I tread upon it in bare feet out of respect and to be more closely connected to it. While I enjoy communing with nature, that doesn't mean I roll around in the dirt nor am I otherwise "dirty". I "worship" (celebrate) "dirt" as in the Earth. I still bathe, wear clean clothes, and my hygiene practices are as sanitary as most anyone else's, and possibly better than many.

I'm already expecting to have to be even more vigilant about such things, especially with regard to food safety and avoiding possible sources of infection, especially immediately following the transplant. My thinking is it is better they know about the bare feet so that any legitimate medical concerns or risks can be rationally discussed and addressed.

[Tora66]

Not sure I believe this

[Tora66]

I'm not buying this. Who in their right mind would ever walk into a medical facility without shoes on unless it was an emergency situation. This guy wouldn't pass the psychological evaluation.

[iolaire]

I'm not buying this. Who in their right mind would ever walk into a medical facility without shoes on unless it was an emergency situation. This guy wouldn't pass the psychological evaluation.

Its a growing trend but like most trends that means people have been do it for many years before, and decades, centuries...

Here are some articles:
http://abcnews.go.com/Health/trend-going-barefoot/story?id=12992806
https://www.theguardian.com/lifeandstyle/2014/feb/14/i-dont-wear-shoes-experience

Not to speak for MrNaturalAZ but the correlation I'd make is do you walk into medical facilities with your hands exposed, or your face exposed?  Both are much less protected than feet with good strong calluses. 

Various folks in the running world promote (with studies) that its best to run bare feet and that running shoes do much more damage to your feet.

[MrNaturalAZ]

Thanks, Iolaire. I was debating if and how to respond to that. While I'm not surprised that some people may be unaware of the barefooting "subculture", it saddens me to think that some people are so closed minded to assume that it either can't exist or would indicate mental illness.

Those were a nice couple articles you linked. If anyone is interested, they might also want to check out http://barefooters.org - it is ia resource for barefooters and those interested in it. There are sections on legal and medical concerns as well as links to many more third-party articles.

In other news, I've received my itinerary for my evaluation. I'll have quite a full day Wednesday - literally dawn to dusk. The other days won't be quite so heavily loaded. Well, unless they start adding more tests and consultations as they go along, based on the results of the earliest ones. So far I have five days over two weeks, plus another couple appointments a couple weeks later. And one more (dermatology consult?) in late December.

[Simon Dog]

My evaluation was a meeting with the NP&*MD; the pharmacist and a social worker.  The rest was a checklist of tests I could get done on my own at a local community hospital.

[LoneHighway]

You either do it their way or you will not be listed. It may not be fair but that's how it is.

[MooseMom]

Many of the tests, including the dermatology consult, is to determine if you have any active cancers that could/would spread once you are transplanted and are on immunosuppressants.

[robertscz]

I think your absolutely crazy if you decide to show up to the evaluation with no shoes and a kilt... Fair or not, they take everything into consideration and if you can't change your lifestyle to that of more "normal" culture there is a high chance you will not be listed.. They may not say it's because of your feet, but they will come up w a reason such as not enough support at home after surgery... You are putting your chances of receiving a kidney and getting back to a somewhat normal lifestyle at risk  in order to prove a point in a sense.... Do not do it