I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
November 23, 2024, 10:37:29 PM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Transplant Discussion
| | |-+  Impending TX evaluation - various questions
0 Members and 2 Guests are viewing this topic. « previous next »
Pages: 1 [2] Go Down Print
Author Topic: Impending TX evaluation - various questions  (Read 12593 times)
MrNaturalAZ
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Tree hugging dirt worshipper.

« Reply #25 on: October 17, 2017, 12:18:41 PM »

I think your absolutely crazy if you decide to show up to the evaluation with no shoes and a kilt...

I have to ask - would that be your advice to anyone who wears ethnic/cultural/religious garb that varies from standard "western" dress norms? Are you recommending "business casual"? or perhaps "business smart" or even "black tie"?

I'd like to think that if I go in there, properly prepared for my appointments, obviously articulate and intelligent, they'll realize that I am a responsible adult. They are educated, intelligent medical professionals that presumably base their decisions upon facts rather than personal prejudices. We're talking about a world-class hospital, not some backwoods clinic.

At this point I'm wondering if I should never have mentioned it here in this forum.
« Last Edit: October 17, 2017, 01:19:35 PM by MrNaturalAZ » Logged

No shirt, no shoes, no pants, no gods. No worries!
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #26 on: October 17, 2017, 01:36:42 PM »

I guess it depends upon your luck of the draw.  If you get a pre-tx team that has very liberal views, you may not have a problem.  Who knows?  Go ahead and attend your appointment as naturally and authentically as you'd like!  You might get lucky!

BTW, my tx neph is a Sudanese woman who wears a hijab.  She got her medical degree from Khartoum.  She's brilliant.

I'm glad you mentioned it here in this forum.  It's a very unusual question.  I confess that I've never heard of a religion that requires one to remain barefooted.
« Last Edit: October 17, 2017, 01:57:45 PM by MooseMom » Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MrNaturalAZ
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Tree hugging dirt worshipper.

« Reply #27 on: October 17, 2017, 02:19:56 PM »

For what it's worth, I just heard from another barefooter (not on this forum) whose spouse had a kidney transplant. Both patient and spouse attended all appointments and meetings in bare feet, and aside from the occasional overzealous security guard at the entrance, they had no problems. No complaints from any of the medical staff, not even any suggestion that it was an infection risk or that the patient should start wearing shoes post-TX.

This is reassuring news for me, and possibly something to make the nay-sayers think again about their own assumptions.
Logged

No shirt, no shoes, no pants, no gods. No worries!
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #28 on: October 17, 2017, 02:30:40 PM »

Which was their transplant clinic?  I'm just curious.

My concern still remains about which other immunosuppressed patients you might happen to encounter on your tx evaluation.  They may not be as open minded and/or educated as you are.  Most clinics have a stonking great jug of hand sanitizer lying about, so would you perhaps consider making a bit of a show of putting sanitizer on your bare feet once you've arrived at your appointment?  It might be a thoughtful thing to do and shouldn't impinge upon your beliefs.  Or would it?  ???
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MrNaturalAZ
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Tree hugging dirt worshipper.

« Reply #29 on: October 17, 2017, 02:49:42 PM »

Go ahead and attend your appointment as naturally and authentically as you'd like!  You might get lucky!

Not too natural, tho, or I might get arrested  ;) 

Quote from: MooseMom
BTW, my tx neph is a Sudanese woman who wears a hijab.  She got her medical degree from Khartoum.  She's brilliant.

I've always found it interesting how many medical professionals in this country come from other cultures. Seems a higher percentage than the population at large.

Quote from: MooseMom
I'm glad you mentioned it here in this forum.  It's a very unusual question.  I confess that I've never heard of a religion that requires one to remain barefooted.

There's a handful, that I can think of, but you're right, it's rather uncommon. In all cases that I can think of, it is done as a show of humility, reverence of the planet, or rejection of materialism - never a symbol of selfishness or pretension.

Also, there is a growing number of people, as Iolaire mentioned already, who are embracing full-time barefooting as simply a healthy lifestyle choice, regardless of their religious or spiritual beliefs.
« Last Edit: October 17, 2017, 03:03:22 PM by MrNaturalAZ » Logged

No shirt, no shoes, no pants, no gods. No worries!
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #30 on: October 17, 2017, 02:56:59 PM »

At this point I'm wondering if I should never have mentioned it here in this forum.

People in the medical field should be trained to be more accepting of people than random commenters on the internet.  Don't take it personal the written word can come out harsher then intended sometimes.   

And as both MosseMom and you acknowledge more than likely a good percentage of the medical team will be used to different cultures...  As I wrote a previous post about trends and how they likely have been practiced for many years I was thinking there had to be some religious folks in say India whose elders have lived barefoot for the last few centuries or more.  So maybe you get an Indian surgeon who is familiar with monks walking around the countryside barefoot in a much less hygienic environment than Arizona...
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MrNaturalAZ
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Tree hugging dirt worshipper.

« Reply #31 on: October 17, 2017, 03:00:58 PM »

Which was their transplant clinic?  I'm just curious.

KU Medical Center in Kansas City

Quote from: MooseMom
My concern still remains about which other immunosuppressed patients you might happen to encounter on your tx evaluation.  They may not be as open minded and/or educated as you are.  Most clinics have a stonking great jug of hand sanitizer lying about, so would you perhaps consider making a bit of a show of putting sanitizer on your bare feet once you've arrived at your appointment?  It might be a thoughtful thing to do and shouldn't impinge upon your beliefs.  Or would it?  ???

Interesting thought. It would be entirely for show, of course. One sanitizes one's hands because they touch various things and other people, spreading germs around. Feet, whether bare or covered, only touch the floor. And perhaps the exam table, scanner bed, etc., which are either covered with linen or paper, else disinfected between patients. As long as my feet stay on the floor, they don't need sanitizer any more than your shoes do. But thanks for the idea - I'll keep that in mind and offer if someone seems uncomfortable.
Logged

No shirt, no shoes, no pants, no gods. No worries!
MrNaturalAZ
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Tree hugging dirt worshipper.

« Reply #32 on: October 17, 2017, 03:11:29 PM »

So maybe you get an Indian surgeon who is familiar with monks walking around the countryside barefoot in a much less hygienic environment than Arizona...

I know of at least one doctor - yes, a "real" modern medical doctor - who practices in bare feet. Not in this country (nor Asia, for that matter), but for reasons of privacy I'd rather not be more specific.
« Last Edit: October 17, 2017, 03:53:07 PM by MrNaturalAZ » Logged

No shirt, no shoes, no pants, no gods. No worries!
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #33 on: October 18, 2017, 07:43:40 AM »

I wince whenever anyone wears shoes into my home.  I have several pairs of slippers that I keep my doors that connect my house to the outside world, so I do understand your ideas about shoes.  They can get disgusting.

What are your feelings, though, about walking barefooted inside of a building where OTHER people have been wearing their shoes?  I can understand being barefooted in a "natural" environment, but I'd be wary of being barefooted in an airport or an underground train station or just about any public building.  They are just so DIRTY?  Are you really happy being barefooted within a medical facility?  I'd be worried for my health.  How do you reconcile the filth of public buildings with your practice of going barefooted?  (This is not a "hostile" question.  I'm really curious!  Thank you.)
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Tora66
Newbie
*
Offline Offline

Posts: 33

« Reply #34 on: October 19, 2017, 07:49:00 PM »

I just hope you make the decision to wear shoes. If not you can kiss that chance of getting on the list goodbye. Go shoeless on your own time.
Logged
Cupcake
Full Member
***
Offline Offline

Gender: Female
Posts: 233

a good year for Chevys

« Reply #35 on: October 20, 2017, 09:15:15 AM »

Transplant centers want to select patients that will succeed and keep their statistics in good shape. Hopefully they will take the time and effort during the evaluation to look beyond the barefootedness and screen for any other factors that may make Mr Natural a less than ideal candidate (I have my suspicions!) I agree with other posters that if you seriously want a kidney, suck it up and play the game.
Logged

PD for 2 years then living donor transplant October 2018.
MrNaturalAZ
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Tree hugging dirt worshipper.

« Reply #36 on: October 22, 2017, 01:51:36 PM »

What are your feelings, though, about walking barefooted inside of a building where OTHER people have been wearing their shoes?  I can understand being barefooted in a "natural" environment, but I'd be wary of being barefooted in an airport or an underground train station or just about any public building.  They are just so DIRTY?  Are you really happy being barefooted within a medical facility?  I'd be worried for my health.  How do you reconcile the filth of public buildings with your practice of going barefooted?

Actually, I don't really think about the surface dirt and germs much. I'm very aware of where I am stepping, but that's mostly watching for puncture/cut injury hazards (in addition to the usual tripping hazards anyone might watch for). Dry particulate matter tends not to stick to my feet, and as for germs, well, my skin does its job. Seriously - unbroken human skin offers an excellent barrier to germs and other pathogens. We wash and sanitize our hands not because germs will be absorbed through the skin, but rather to prevent transfer of the germs to food, or, when touched, our eyes, mouth, or other mucous membranes and/or openings (wounds, dialysis access, whatever) where the pathogens can enter our bodies. Since I don't handle food with my feet, and they pretty much stay on the ground, and generally don't touch my face or other vulnerable areas, it honestly does not worry me at all.

Sure, there can be a psychological "ick" factor, but I don't really have that for simple dirt and germs. Stepping in dog-poo is unpleasant. The logical part of me, however, realizes that in reality it is harmless - I wipe it off as best I can and wash as soon as water it available. My biggest worry in that instance is tracking/transferring.  Probably the worst thing I've had to step in/on indoors is the occasional wet/messy floor in a public restroom. When that happens, I wait or go elsewhere if possible. I once had to use an extremely filthy porta-potty and I had no choice and couldn't wait. It was disgusting, but I did what I had to, then found a nearby water spigot and washed off and quickly forgot about it.

I guess bottom line is in knowing what's really harmful and what's simply "gross" but otherwise harmless. And in trusting my body's largest organ (my skin) to do its job and keep the nasties out.

Quote from: MooseMom
(This is not a "hostile" question.  I'm really curious!  Thank you.)

I don't mind a all answering questions of genuine curiosity. I only become defensive when someone leads with "you must be crazy"
Logged

No shirt, no shoes, no pants, no gods. No worries!
MrNaturalAZ
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Tree hugging dirt worshipper.

« Reply #37 on: October 22, 2017, 02:40:07 PM »

Well, it seems I got my hopes up for no reason. I didn't make it past my first appointment, with the Transplant Nephrologist. While I'm sure some people will think what they'll think, I honestly believe the rejection was medically legitimate, and has nothing to do with my lack of footwear.

I have a history of squamous cell carcinoma. I have a spot on my scalp that was previously cancerous, and does not want to fully heal. It has been that way for several years - not getting worse, not apparently cancerous, but won't fully heal either. Biopsy is inconclusive - reveals "atypical" cells, but not necessarily cancerous. In other words, nobody is willing to say with enough confidence that I am indeed cancer free.

The TX neph's concern is that once I am immunosuppressed, the cancer will reappear and rapidly grow. He compared the action of anti-rejection meds on cancer cells to pouring gasoline on a fire. He told my that while the transplant would likely be successful, there would be a high probability of my dying from the rapidly spreading carcinoma. He told me that while it is certainly my right to seek another opinion and another transplant program might accept me (but only if/when the ulcer on my scalp would heal - otherwise I'd certainly not pass the dermatologists exam) but he can't recommend it.

He said there was no point in going through the rest of the testing, at least not for now, so that's that for the time being, I guess.

In retrospect, I have to wonder - why would my nephrologist have even referred me for a TX eval? He was aware of my history and of the non-healing wound on my head. I asked the TX neph if perhaps my neph was just being overly optimistic and his answer was "they (my regular nephs) are 'dialysis doctors'; I'm a transplant doctor." He said that the regular nephrologists simply aren't aware of all the various risks and complications of a transplant.

So I guess for now - maybe forever - I can forget about transplant and prepare myself mentally for dialysis. One less decision to make, one less thing to worry about, I suppose. I'm a bit bummed, but life goes on.
« Last Edit: October 22, 2017, 02:43:24 PM by MrNaturalAZ » Logged

No shirt, no shoes, no pants, no gods. No worries!
kristina
Member for Life
******
Offline Offline

Posts: 5530


« Reply #38 on: October 22, 2017, 04:13:00 PM »



In retrospect, I have to wonder - why would my nephrologist have even referred me for a TX eval? He was aware of my history and of the non-healing wound on my head. I asked the TX neph if perhaps my neph was just being overly optimistic and his answer was "they (my regular nephs) are 'dialysis doctors'; I'm a transplant doctor." He said that the regular nephrologists simply aren't aware of all the various risks and complications of a transplant.

So I guess for now - maybe forever - I can forget about transplant and prepare myself mentally for dialysis. One less decision to make, one less thing to worry about, I suppose. I'm a bit bummed, but life goes on.

Please don't feel disheartened about it, your nephrologist may have been a bit enthusiastic, but I am sure he meant well. You know, my own nephrologist was the same and sent me to be evaluated much too early after "my" own cancer episode. And my nephrologist made absolutely sure that I was on the waiting list the minute after my 5-cancer-free-years were completed. Perhaps your nephrologist thinks similarly...
Good luck wishes from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kickingandscreaming
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2268


« Reply #39 on: October 22, 2017, 04:15:22 PM »

Sorry for your disappointmet.  I also doubt that I'm a candidate for TX.  Too many  heart issues and I'm an old fart (76 soon). I'm just hoping that PD keeps working for me and that the bio-artificial kidney comes in my lifetime.  Sounds like that would work for you, too.
Logged

Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #40 on: October 22, 2017, 06:21:28 PM »

Sorry to hear you were blocked.
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Simon Dog
Administrator/Owner
Elite Member
*****
Offline Offline

Gender: Male
Posts: 3460


« Reply #41 on: October 22, 2017, 09:52:16 PM »

If the artificial kidneys is out in 3 years, it will be at least another 3 before it is generally available.  Everyone will want one, but it will only make sense to make them at a pace demand can sustain for the long term.
Logged
MrNaturalAZ
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Tree hugging dirt worshipper.

« Reply #42 on: November 01, 2017, 09:47:29 PM »

Artificial kidney? I'm thinking that sooner or later they'll be able to grow a real (well, maybe bio-synthetic?) kidney from the patient's own stem cells. I don't know too much about such things, but I'd think it would be 100% compatible that way, and require no anti-rejection meds, removing any concerns related to immunosuppression. Then anyone could get a "transplant" of their own actual organ with their own exact DNA. SOund plausible? Maybe in 10 years or so?
Logged

No shirt, no shoes, no pants, no gods. No worries!
Paul
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1087


That's another fine TARDIS you got me into Stanley

« Reply #43 on: November 25, 2017, 11:59:15 AM »

It is probably because I live in the next country down from Scotland, but here a kilt would be no problem.

However no shoes? As there are more people wanting a kidney than there are spare kidneys, here they would reject you because of the risk to the kidney, better to give it to someone who will look after it properly. Remember, an infection from something as simple as a foot ulcer can kill the transplanted kidney. And any bacteria you pick up off the ground could kill the new kidney.

However bearing in mind the medical history you posted, I too doubt it was the shoes that caused the problem.

« Last Edit: November 25, 2017, 12:02:06 PM by Paul » Logged

Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Pages: 1 [2] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!