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Author Topic: What is ok and not ok?  (Read 3303 times)
Tracy
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Loved the Movie!

« on: May 04, 2010, 10:16:08 AM »

Hi,
I was laying out in my backyard this past weekend, trying to get a little sunshine and I was thinking, Is it ok to get sun if you are in ESRD?  Will it hurt the fistula?  Will it make me sick or something?  Does anyone know?  I did try to search this topic, but didn't find anything.  I am on the transplant list and I know a doctor along this way has said once you get a transplant and are on all the meds, you cannot layout in the sun.  Not sure why, I figured maybe the meds would react with the sun or something.  Does anyone know?

Thanks!  Tracy :) :waiting;
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9/1990 Found out I have Type 1 Diabetes
7/2008 Told I have GFR 30
2/2009 Kidney/Pancreas Transplant
5 days later, both removed due to massive rejection
Back on List
2/26/10 Fistula placed
3/11/10 Told GFR 9
5/14/10 Started in center Hemo
Waiting on another Transplant
billybags
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« Reply #1 on: May 04, 2010, 10:22:31 AM »

Tracy get out in the sunshine as much as you can, think vit d it is good for you as long as you have plenty of sun screen on.I have heard that when you get transplanted sun shine is a no no unless you cover up and use factor 50, some thing to do with the meds but some one else on here who has been transplanted will tell you why. I love the sun.
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MooseMom
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« Reply #2 on: May 04, 2010, 10:26:54 AM »

Immunosuppressants make you run a bigger risk of skin cancer, so sunbathing just exacerbates that risk.  ESRD in and of itself doesn't make sunbathing more dangerous.  But sunbathing isn't smart even at the best of times.  You can enjoy the sun when you use sunscreens or coverup clothing.
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"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."
paris
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« Reply #3 on: May 04, 2010, 12:36:37 PM »

MooseMom is right. The anti-rejection meds increase the chance for cancer.  You just need to be careful.  Enjoy the sun now.  It does feel good to have the sun shining on your face   :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Rerun
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« Reply #4 on: May 04, 2010, 12:59:07 PM »

When you are on the anti-rejection drugs they make you really sensitive to the sun.  So, if you use to tan in 30 minutes you may burn in 10 minutes.  I don't avoid regular sun, but I use 60sfp on my face and arms.  AND I don't lay out anymore.  I'll sit in the shade and let my legs out to get sun.  Even though I don't have my transplant anymore my skin has changed and I have to be careful and soap up with sun screen.

         >:(
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monrein
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Might as well smile

« Reply #5 on: May 04, 2010, 01:55:38 PM »

I'm post transplant and avoid the direct sun at all times.  I'm a big gardener, out there for many hours on end but I wear long sleeves, big hat, sunscreen, gloves...you get the picture.  I also see a dermatologist every year or so to be thoroughly checked for little growths and have each and every one removed and checked out.  We are at higher risk, much higher risk, for cancers with the anti-rejection drugs and if one is very fair, as I am, it only makes sense to be careful.  I'm extra cautious since my Mum died of melanoma at 46 and our next door neighbour in Jamaica also died of melanoma at 50...he was also very blond and fair-skinned...those were the days before sunscreen use and my Mum never wore a hat.
Prednisone can also make us extremely sensitive to the sun.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
RichardMEL
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« Reply #6 on: May 05, 2010, 12:02:01 AM »

Pre-transplant Tracy get out there, slip on the bikini and get the rays baby. The vitamin D probably won't be absorbed as well, but it isn't bad for you per se (well not any worse than for a regular person I mean). Shouldn't harm the fistula or anything. I walk every day in the sun in short sleaves, and my fistula area is a little tanned, and so far so good.

If you get a transplant, that's a whole other matter and you definitely need to do as we say down here: slip, slop, slap! (slip on a shirt, slop on sunscreen, slap on a hat - before you all think I'm being rude & crude  :rofl;). As others have said, immunosupression drugs make you must more sensitive to the sun and skin cancers, so you need to be careful in that respect.

For now though, sun it up - but obviously use sunscreen etc and be mindful of the sun as per normal.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Tracy
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Loved the Movie!

« Reply #7 on: May 05, 2010, 11:39:05 AM »

Well, thank you all for the response.  I do feel more at ease now.  It is straight now in my mind.  I love the slip, slap, slop idea!  Funny!  I LOL here at the office.  :)

Thank you!   :bandance;
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9/1990 Found out I have Type 1 Diabetes
7/2008 Told I have GFR 30
2/2009 Kidney/Pancreas Transplant
5 days later, both removed due to massive rejection
Back on List
2/26/10 Fistula placed
3/11/10 Told GFR 9
5/14/10 Started in center Hemo
Waiting on another Transplant
RichardMEL
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« Reply #8 on: May 06, 2010, 07:14:14 PM »

here's an ad from the 80's we grew up with all about it:
http://www.youtube.com/watch?v=7juelCXC1-k

and an updated version:
http://www.youtube.com/watch?v=YzYHwzSE1VY

and here's a kiwi version:
http://www.youtube.com/watch?v=7Sh9ZF-UxMw&feature=related

I prefer the 80's, but then again I was a teenager then and I wasn't diagnosed, so I definitely preferred those years!  :rofl;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
RightSide
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« Reply #9 on: May 10, 2010, 04:23:14 PM »

Before getting a transplant, the UV rays from the sun are actually good for you (in moderation).  There is evidence that UV light can cause chemical changes in the skin that reduce the itching that plagues so many of us ESRD patients. 

After a transplant, that's a whole other story.  With a functioning kidney, the itching will go away.  And UV light is dangerous for the reasons others have already mentioned.
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natnnnat
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« Reply #10 on: May 27, 2010, 10:53:27 PM »

I had a friend who had a kidney transplant years ago, and even though he was very careful with the sun, with hats, with sunglasses and skin cream, he got a skin cancer on his eyelid.  He had it removed in various ways for a few years, lost his eyelashes, etc.  Then in 2004, or was it 2005, they found it was still there, and was travelling along a nerve.  So they removed his eye.  But it still came back.  He lost his nose, and his other eye closed up :-( sorry this is pretty nasty.  Evenually this dear friend died just last year, I am not sure exactly what the cause of death was because I suppose you can't be said to have died "of skin cancer".  I didn't get the medical low-down properly at the time. 

But this was all still going on when I met my husband Gregory, with his faded fistula and kidney transplant scars.  I immediately  noticed scabby lumps on his head, and marched him back to his gp to get the referral to the skin specialist. They spent a year or so faffing around with some kind of laser treatment, burning the skin off?  And then finally a plastic surgeon removed like a tile off the side of his head.   He hates his tile but I love it, it is clear skin instead of skin cancer, which is really horrible, smelly (!) and scary stuff. 

The oncology people said the damage from the skin cancer could date back, even before his transplant.  He is very careful with hats and so forth... and a little bit of sun is, as commented above, really health giving and good.  But be really really careful with sunburn I reckon.  If you are likely to get a transplant in the future, that is.  I guess sunburn is a big issue here in Australia, and people have been pretty blase about it a lot of the time.  I used to love basting myself in coconut oil, deary me, and roast myself in Darwin, which is about as close to the equator as you can get in Australia.  James (my friend) lived in Brisbane, where the sun is also very strong. 

RichardMel, your youtube clips got me humming away, I love that lisping slip slop slap song.  Especially, protect your head.  That's my poorly expressed  :twocents; worth.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
KICKSTART
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In da House.

« Reply #11 on: May 28, 2010, 07:12:41 AM »

SUN? ? ? whats that ?  8)
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Darthvadar
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« Reply #12 on: May 28, 2010, 07:49:45 AM »

SUN? ? ? whats that ?  8)

I'm told, and I'm fairly sure of my source KS, that the sun is that big yellow thing in the sky that we West Europeans only get to see once in a very blue moon!!!!....

Love....

Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
natnnnat
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« Reply #13 on: May 28, 2010, 08:25:26 AM »

Sun seems to be obsessed with itself here in Australia.  I got excited over a bit of torrential rain lately, decided to buy an umbrella.  Couldn't choose between the massive rainbow one and the dainty one in latte colours with the frilly edging.  So I bought both!  Its a special day, and I wanted to celebrate!  Went home carrying three umbrellas, those two and the one I inherited from my grandmother, with the monet reproduction on it. 
Not a drop of rain.  Clouds clearing.  And, yup:  sun. 
Never mind, I'm one of those geeky girls who carry parasols too.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MooseMom
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« Reply #14 on: May 28, 2010, 09:42:23 AM »

I remember that one year while I was living in the UK, it rained every day from October to May.  Every day.  There was a church at the bottom of the road that had a glass-paned sign outside outlining the details of the service that Sunday, and one day I noticed that the sign had little mushrooms growing inside of it.  But there are few things more enchanting than an English summer's day...when the sun is out. 
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"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."
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