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Author Topic: I think I have cancer  (Read 20971 times)
Beth35
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« on: January 29, 2011, 03:23:35 PM »

So I knew that I was at a higher risk for skin cancer because of all of the meds that cause my low immune system. 

Well, I have had this bump on my nose for quite some time now.  I kind of looks like two small pimples that are raised off of the skin.  I have tried to wash it off and scrape it off and yet it has been there for a long time.  I recently decided to look it up on the internet and it appears to be a form of skin cancer.  I'm scared to death.

What scares me more is that I lost my insurance and cannot even see a doctor.  I have been working so hard to get insurance but I have come up empty. 

Since my employer has cut my insurance all the way back to August, I would have to pay Cobra like four thousand dollars to get coverage if they would even have me.  I make way too much for medicaid but not enough to afford to see a doctor and pay for my meds on my own.

Has anyone ever had skin cancer after a transplant?  What is the treatment?  I swear I cannot handle chemo AND end stage renal failure.  I really can't. 

It seems like the system is set up to help the really poor people and the rich people can afford to pay for their health, but those of us in the middle are shit out of luck.

I'm pretty scared right now.  I am a single mom to two kids and I can't even afford my transplant meds let alone my anxiety medications.
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
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« Reply #1 on: January 29, 2011, 04:08:39 PM »

Beth, you may feel that you cannot afford to see a doctor, but truly you cannot afford NOT to.

Most skin cancers caught early are very easy to treat. My dad has them cut off his ears and nose all the time.

GO, go to the doctor and have it taken care of. Untreated it CAN become a big deal.

 :grouphug;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #2 on: January 29, 2011, 05:08:21 PM »

I have seen different dermatologist give free skin cancer checks. Also check the American Cancer society about insurance or locating a dermatologist who could give you a reduced rate....don't give up. I know the system is not working for us but we have to keep on fighting.
hang tough!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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« Reply #3 on: January 29, 2011, 10:14:02 PM »

For New Jersey, here are some agencies where you may get some help:

Senior Gold Prescription Discount Program and Pharmaceutical Assistance to the Aged and Disabled (PAAD)
A prescription drug discount program for the disabled and seniors in need to help them pay for prescribed medication and drugs. 1800-792-9745

Charity Care- Hospital Care Payment Assistance Program
This an an assistance program that will help pay for doctor and hospital bills. The program provides free or low cost health care to lower income patients who are admitted to hospitals throughout New Jersey. To be eligible for aid, those in need of help must have no or limited health insurance coverage. http://www.state.nj.us/health/charitycare/index.shtml

Medicaid
An entitlement program that currently provides health insurance for more than 600,000 very low-income New Jersey parents, people who are aged, children, and the blind or disabled. The program pays for doctor, hospital, prescription drug bills, nursing home expenses and many other health care benefits. http://www.state.nj.us/humanservices/dmahs/clients/medicaid/

Check also by county here http://www.needhelppayingbills.com/html/new_jersey_assistance_programs.html
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Beth35
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« Reply #4 on: January 30, 2011, 07:17:55 AM »

Thanks guys for the ideas.  I will check them out.  Something has got to work right?  At least that is what I tell myself.
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #5 on: January 30, 2011, 02:03:08 PM »

Beth I was just thinking about you and realized something today when I was gettting ready...when I still had my transplant one day I felt a hard little lump on the top of my forehead. I was freaking out thinking it was a tumor or some short of skin cancer. I went to one dermatologist who took a puncture biopsy of it and it came back negative. A few weeks later it grew back and then I was really freaking out. I went to another dermatologist and he numb the entire area of my forehead, and cut out the lump completely...it never came back. I wish I would have had it cut out completely the first time. The bump felt like it was as big as the tip of my pinkie finger and little fluid filled and squishy....just wanted to give you more hope. It will be ok! Get it checked out. :)

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
wj13us
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« Reply #6 on: January 31, 2011, 08:14:36 AM »

Beth:

I'm not a doctor with expertise in post transplant skin cancer but I think I could be one.  I've been immunosupressed for almost 38 years so lets just say I've had my experience with skin cancers.  The most common kind we get is squamous cell carcinoma.  This type does not spread if treated.  I've had so many of these I've lost count.  What you described may be one.  For me its a pimple type bump with a scab in the center.

The course of treatment is generally the same for me.  If it just looks suspicious the dermatologist with just try to freeze it off with liquid nitrogen.  This is not as bad as it sounds.  If it does look like cancer or comes back after freezing then a bioposy is in order.  If its small a punch biopsy will be done that is just "punching" out a section usually the whole thing.  If the results come back positive there may be nothing else to do if the "boundaries" are clean.  You will hear this boundary thing a lot.  That is in the biospy there was no cancer cells seen at the edge of the punch so there is no need to go further.  If the boundaries are not clean then they will need to cut some more out.  Again not a big deal usually done in the doctors office.  They will look at the piece they cut out and again make sure the boundaries are clean.

If its on your nose you may want to look into Mohns surgery. This is nothing more than plastic surgery. The surgeon will take tiny pieces of skin off and evaluate it for clean boundaries.  They will leave no noticeable scar.  Or just go with a plastic surgeon.  On the tip of you nose that is what the dermatologist might recommend.

Please don't worry too much.  It does not sound like melanoma.  That is the one that can be deadly.  I've never had that.


Bill
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Beth35
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« Reply #7 on: February 01, 2011, 11:23:41 AM »

Thank you for your responses.  I am applying for nj protect insurance so hopefully I can get checked out soon.  I am hoping for the best.
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
texasstyle
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« Reply #8 on: February 15, 2011, 07:53:40 AM »

WJ gave some great information to you. My husband and father have had a couple episodes of skin cancer. Commonly is basil cell (?) which is an area of concern that will not sem to heal. Over time it can be disfiquiring, but is rarely fatal. Treatment consists usually of having the area "cut out" by the doctor and can be done in his office. Of more concern is when the area is black. I believe this is called Melanoma. A life long mole may even change color. Yours sounding like a pimple sounds like WJ's. Only a doctor of course can make a determinaion of diagnoses. That being said, as we age our skin changes it's apperence too. I wouldn't get overly upset but if it is of concern to you most certainly try all attempts to have it looked at. I'll bet even a regular primary care physcian can look at it and give you his opinon. It's probably less expensive than seeing a specialist first thing.
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caregiver to husband using in-center dialysis 4 years
Sluff
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« Reply #9 on: February 16, 2011, 07:35:47 PM »

Hello Beth, I can not answer your questions because My Mother in law just had surgery on her face to remove some skin cancer last Tuesday and she is 90 years old but still pretty active. She however does not have kidney disease and is not on dialysis. But I want you to know that I am thinking of you and hope for a good outcome. My Mother in law is doing fine, and I'm sure you will also.
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #10 on: February 17, 2011, 12:22:16 AM »

Beth have you heard anything?  I am thinking about you....

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
kellyt
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« Reply #11 on: February 17, 2011, 06:27:39 PM »

Would you be comfortable posting a photo of it on here?  I'd like to see what it looks like.  I need to make a dermatologist appointment really soon myself.

Thanks.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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« Reply #12 on: February 17, 2011, 11:38:30 PM »

Has anyone else been given tretinoin cream to help prevent skin cancer? This was prescribed by my dermatologist associated with the transplant clinic.
 
Beth this maybe something to look into getting when you have insurance, it is expensive to get without insurance tho. Hopefully you can get this resolved quickly.
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Diabetes -  age 7

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Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
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No two day's are the same, are they?
RichardMEL
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« Reply #13 on: February 17, 2011, 11:43:25 PM »

I have been a bit anal with the sunscreen since my transplant. What do you guys (and gals) generally do with regards to this. I mean do you bother if you're only going to be out for 15 minutes? Do you bother if it's early morning or winter? Here it's summer so the sun is strong, and I put on if I'm going out for a walk at lunchtime (>15 mins usually) but even in the morning as I walk before work and the sun is out then. I wear long sleeves when I can (but it's a bit hot lately for that) and hats etc, but trying to do the right thing.. but am I going overboard (sorry I know this is a bit OT, but thought I'd ask here anyway).
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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!
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« Reply #14 on: February 17, 2011, 11:52:16 PM »

Richard, I usually do not wear sunscreen because I am not out much unless I was mowing grass, o outside for periods of time. However if I was out and about driving, I usually had a jacket on to hang my arm up on the window. I don' wear shorts either due to never liking them, but since your weather is different from mmine and you are out longer doing what you do, I say your doing it right with wearing sunscreen.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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« Reply #15 on: February 18, 2011, 10:37:56 AM »

I think Monrein suggested to put sunscreen on in the morning, make it part of your morning cleansing process, especially the face and neck. Then it is done.  Women can get foundations with spf 15- 30 built in them.  But, I use it like a moisturizer after I wash my face.  Stick a small bottle in my purse and go.  Nothing feels better than the sun on your face and I love sitting on the beach for hours.  But, I will trade that for a kidney any day!     I think you are doing great Richard.  Better to be safe than sorry!
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kellyt
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« Reply #16 on: February 18, 2011, 02:42:30 PM »

I'm not "anal" about sunscreen, but I do put it on my face in women's facial products and make-up.  When I went to the beach last Summer I wore it all over my body, but I also have a big hat and didn't wear a bathing suit, just shorts and t-shirt.  Like Chris, if I'm outside for an extended period of time doing yard work or something, then I'll put some on my arms, legs, neck and legs, but I'm rarely out of the house in the Summer months.  HATE the heat!

I also have developed a small something under my left eye.  A tiny bump.  I've picked it off and it comes back, so I'll be making an appointment next week.  That's why I'd love to see a photo if possible.  Thanks!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
cariad
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« Reply #17 on: February 19, 2011, 06:38:48 PM »

I feel for you, Beth! Hugs!

I think I may have skin cancer, too, but from my limited internet research, I think it is probably basal cell, which when caught early enough presents no problems. It is a red spot on my nose that appeared a few months ago, and now a red line seems to be forming as well. My appointment with the dermatologists at the transplant hospital is the day before my one year biopsy. What a fun week I've booked for myself, eh? I plan on asking for the tretinoin that Chris mentioned from the doctor as it has been shown to reverse sun damage. I grew up in Santa Barbara, on ridiculous doses of immunosuppressants - it is a miracle I still have skin! Is it my fault that tretinoin also happens to be a pricey anti-aging formula that I could get insurance to cover?? :yahoo;

Additionally, I will also ask for the Mohns surgery that Bill mentioned when they go to biopsy. I read the story of a woman who had a red line on her face for a year that turned out to be basal cell carcinoma. She had Mohns and seemed happy with the results.

There was a long (and somewhat acrimonious) discussion in the transplant section about skin cancer a few months back. Peter (Hemodoc) said that squamous cell carcinoma is actually the most dangerous type of skin cancer for transplant patients and that it can turn ugly very quickly. I found a really great summary journal article written by doctors, and it corroborated what Peter said, that squamous cell can be really dangerous. I am glad this has not been a problem for Bill. I have gone 35 years on immunosuppressants and never had skin cancer, so obviously individual stories will vary widely. I had some dysplastic cells that they want to remove, but there is no guarantee that they would ever have turned cancerous, and I had that small, dark spot on the back of my shoulder for at least 10 years before they biopsied it.

I wish you the best of luck. I know how scary it is to think that the complications of transplant may have finally caught up with you. Thinking of you!

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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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RightSide
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« Reply #18 on: March 06, 2011, 06:30:06 PM »

I have been a bit anal with the sunscreen since my transplant. What do you guys (and gals) generally do with regards to this. I mean do you bother if you're only going to be out for 15 minutes? Do you bother if it's early morning or winter?
I asked my transplant team about this.

They said I don't have to be that obsessive about putting on sunscreen during winter.  It's most important when I'll be in the sunshine during summer.

Of course, I live in New England at 42 degrees north latitude, where the sun is real weak and real low in the sky during winter--on those few days when we even get any sunshine.  Someone who lives in Mexico all year round would probably have to use sunscreen all year round.

And if you live north of the Arctic Circle, you don't need to use sunscreen at all during the winter.   ;D
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kellyt
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« Reply #19 on: March 08, 2011, 02:22:17 AM »

I have a dermatology appointment scheduled for March 31st.  I've been bad about this requirement and it's time to get on the wagon.  ugh, one more thing to worry about.

I did, however, find a face cream with an SPF 25.  I've been using an SPF 15.  Both are Clinique products.  I love it.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Des
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« Reply #20 on: March 08, 2011, 02:41:51 AM »

I have a dermatology appointment scheduled for March 31st.  I've been bad about this requirement and it's time to get on the wagon.  ugh, one more thing to worry about.

I did, however, find a face cream with an SPF 25.  I've been using an SPF 15.  Both are Clinique products.  I love it.

I also use Clinique's SPF25 face cream. It is the best.  :yahoo;
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
kellyt
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« Reply #21 on: March 08, 2011, 11:06:06 AM »

I have a dermatology appointment scheduled for March 31st.  I've been bad about this requirement and it's time to get on the wagon.  ugh, one more thing to worry about.

I did, however, find a face cream with an SPF 25.  I've been using an SPF 15.  Both are Clinique products.  I love it.

I also use Clinique's SPF25 face cream. It is the best.  :yahoo;

I am liking it so far, Des.  :thumbup;    Do you put it on at night before bed or just in the morning?
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Des
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« Reply #22 on: March 08, 2011, 09:29:51 PM »

The one with the SPF in the morning and a nurishing night cream at night. It is just FAB!

I will have to get something else for my arms and hands when I finally get a transplant. Hubby is very scared about the cancer thing as we live in the SUNNY South Africa . :urcrazy; So the chances are very high here (as per the transplant coordinator)

Sorry Beth that we are "crashing" on your post  - I hope yours have been sorted out.   :cuddle;
« Last Edit: March 08, 2011, 09:36:06 PM by Des » Logged

Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Beth35
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« Reply #23 on: March 10, 2011, 06:37:20 AM »

Hello everyone.  Wow, thanks for all of the replies.  Sorry I have been out of the picture for some time.  Trying so hard to get insurance.

As far as the spot on my nose, after months and months of it being there.  It went away!  I started putting a lot of cream on it and it just vanished!  Weird. 

But because I don't have insurance, I still have yet to get the mole on my back checked out.  I will do that ASAP as soon as I get insurance in place.  But this whole thing has taught me to be very aware of how skin cancer can affect us.  So still being sure to check my skin regularly.
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
monrein
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« Reply #24 on: March 10, 2011, 06:59:06 AM »

My favorite sunscreen is La Roche-Posay's 45 SPF.  The 60 is too thick and icky but the 45 goes on well.  Every day, summer and winter on theface.
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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
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