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Dumb question: If my cancerous (presumably diseased) kidney is gone, do I have kidney disease?

anmazon
Posts: 125
Joined: Jun 2013

Hello All.  Someone asked me today if I had checked the kidney disease warning label on my deodorant.  Of course, my response was, "huh?"  So I got home, and sure enough, there is a statement that I should check with my physician before using this particular brand of deodorant if I have kidney disease.

I know this seems completely picayune, but is it safe to use deodorant?

(In New Mexico, during the summer, this is not a small issue)

If nothing else, I'm looking forward to hearing some highly amusing responses to my panicked question.

Warm regards.

Anne

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Ann,

I am going to try and answer your question seriously without discussing body odor.

A lot of things cause Kidney Disease which is measured by your GFR.

These include high blood preassure, smoking, diabities, medications, your age among others each of which reduce your Kidney function. A lower Kidney function effects heart issues and can also lead to dialysis.

 Having 1 kidney is also a cause of lower Kidney function.

 

All of us with 1 kidney are more likely to have kidnry disease than the general public and that is why we have to watch our medications diet and blood pressure more than the general public.

 

Kidney disease is also a spectrum disease. Those of us with perfect kidneys have a GFR of 100 or more. At 90 we are classified as having Stage 1 CKD- Chroic Kidney Disease (minor kidney function loss). At a GFR of 60 to 90 we have Stage 2 CKD (mild kidney function loss. Between 30 and 60 we have Stage 3 CKD which is loss of some Kidney function. Between  a GFR of 16 and 29  is serious loss of Kidney function and Stage 4 CKD . At 15 and below you have Stage 5 CKD and at that point you are put on dialysis. Those with Stage 3 and 4 CKD have a higher risk of heart attack or stroke.

This is why many of us also see a Nephrologist. After my surgery 11 years ago my GFR was 60. A few years ago as a result of High Blood pressure and getting older it went down to 41. As a result of  keeping my blood pressure lower it is back up to 47.

In conclusion having one lidney can be a factor in Kidney disease and heart issues and for those reasons we have to watch our kidney health and as to whether we use a deoderant that may have a Kidney warning first ask your  GP and if you have one ask your Nephrologist. 

I hope this gives you food for thought on a subject (CKD) which needs more dicussion on this forum.

 Icemantoo

 

 

GSRon's picture
GSRon
Posts: 1126
Joined: Jan 2013

Yes, I agree with Icemantoo..  and for more morsels to nosh on...  last year right after my surgery I did a Google search and found a Healthy Kidney diet..  Hope this helps the discussion...

Ron

anmazon
Posts: 125
Joined: Jun 2013

Thank you, Ron.  I found a really good renal diet cookbok online , which includes some really delicious recipes as well as good dietary guidelines (including a renal food pyramid of all things).  

Thank you, Ron (and Iceman) for your great answers to what has turned out to be a not-so-dumb question.

You are all the best and I truly appreciate your wisdom, friendship and support.  The jokes around here aren't half bad either--which is a nearly incalculable value-added bonus.

Warmest regards from the desert.

Anne

GSRon's picture
GSRon
Posts: 1126
Joined: Jan 2013

Well, I prefer having  a dessert to being in the desert....  :)

Ron

anmazon
Posts: 125
Joined: Jun 2013

Ron, I'll take a good dessert any day over a day in the desert.

Though monsoon season started last night and my desert is delightfully WET!

A

anmazon
Posts: 125
Joined: Jun 2013

Thank you for a reasonable and sensible response that made sense to someone who is still adjusting to life with one kidney and learning that her life is suddenly a whole lot more complex than it used to be.

I never really considered that there were warning labels on deodorant, of all things, especially a warning label that might pertain to me.

I'll definitely talk to my GP about this. I've got a nephrologist waiting on the sidelines as well (they're concerned about my post-surgical creatinine level of 1.4).   Though I've known both of them and most of the docs at my hospital for years, this forum seemed like a much safer place for what seemed like a ridiculous question. 

I'm 50, I don't smoke, my meds seem to be in order (synthetic thyroid and an estrogen patch) and I am adhering to a pretty strict quasi-renal diet per my urologist's instructions ("watch your protein and sodium").

It seems like it might not be unreasonable to throw out my old deodorant, and shop for something WITHOUT a warning label on it tomorrow.

Thank you again, Iceman

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Anne, you've had a comprehensive reply from iceman which covers the salient points with clarity and in helpful detail, so I hope a few extra comments won't go amiss. For the reasons he's already given, and others I'll add below, I agree with iceman that "CKD" is a topic "which needs more dicussion on this forum".

I reckon you'll have appreciated why the answer 'Yes and no'  is a very good answer.  It's a sad fact of life that the fields of medicine and nutrition are littered with misleading terminology that give rise to gratuitous misunderstandings on important issues.  This is a good case in point.  The simple answer to your question - in the particular circumstances in which you've asked it - is: No (at least, not until anything more is discovered about your remaining kidney)  - the surgery has removed your kidney disease.

Your question is anything but dumb and it gets regularly visited here, often in the context of 'diet for someone with only one kidney'.  There are no special dietary requirements for those of us who have one kidney, or less than one.  The same, sensible, diet is needed as for someone with two fully functional kidneys - the only difference is that with the reduced capacity (no 'spare' ) it becomes more important to stick to the healthy diet.

The confusion arises from the silly use of the term CKD (chronic kidney disease) in a situation  of no disease.   Doctors have vast amounts to learn (and to try to keep learning) and medical rubrics are glaringly inadequate on crucial topics like mental illness, followed by nutrition, ehtics, and others, and there is no time for them to study philosophical abstractions, such as the relationships among structure, function and process.  So, we end up with positions like having a group of tests labelled LFTs (liver function tests) which is a misnomer - they are a mixture of tests of function and tests of damage, with important ones being damage tests misdescribd as tests of function.

iceman has listed major factors affecting kidney function and mentioned that GFR (Glomerular Filtration Rate) is a measure of function and he's given the ranges that dictate what measures may need to be taken.   These are misleadingly referred to as 'stages of kidney disease' when they're no such thing.  Most of us here have only one kidney and many of us are past the first blush of youth.  As iceman says, age is a significant factor and his GFR, in the 40s, mostly represents his having entered middle age :)  and not that he has any disease of his lone kidney.  We need to take extra care of the kidney function we have left, BUT we don't need to be concerned about warnings for people with kidney disease, since we, generally, don't have kidney disease!

anmazon
Posts: 125
Joined: Jun 2013

Except for the unfortunate decision to celebrate national hot dog day by eating a chile dog with my brother, I've been very well behaved in terms of my diet. And it was a really good chile dog....

Oh, um....  Except for a hot dog, I've been really good about my diet, and I'm nervous as hell about everything else (can you tell?).

Thanks for your kind advice, Mr. Wedge.

I so appreciate that all of you are here for my Chicken Little moments.

Warm regards.

Anne

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Are regular occurences around my house! I'm sure we all have them.  Never apologize for them because we all know what they are like.

I hope your diet has not significantly reduced your capacity for chile with an E! Laughing There are some things that require risk!  LOL

This was a great question. Its one I should have considered myself.  You see I've proceeded with my normal diet with the exception of reducing my protein intake, waiting to see the results of my first bloodwork post nephrectomy before I make more serious adjustments to my diet. I am reviewing Nanosecond's (Neils) dietary paper for insights.

I had already improved my diet significantly before DX by eliminating sugar, and certain very starchy foods, adding large quantities of fresh fruit and fresh vegetables prepared simply.

Hopefully, even if I am off base, the bloodwork will provide me with more specifics as to which direction to take.

Hang in!

I envy your New Mexico Thunderstorms!  They are quite unlike other storms anywhere else I have ever been! A friend sent pictures of the lightning!  

https://www.facebook.com/photo.php?fbid=10152064096768082&set=a.10150831631733082.512879.98691658081&type=1&relevant_count=1

Impressive!

Michael

 

anmazon
Posts: 125
Joined: Jun 2013

Hey, Michael,

I've had to give up my dear friend table salt, but my chile is what is keeping me going (once a week, my brother and I go to Sadie's for a bean burrito--I get my chile fix without too much "bad" protein).  Thankfully my cast iron stomach is still intact and I can eat lots of their delicious salsa.

I'm watching the protein (urologist says 100-120 grams per day should be fine), struggling to stay below 2,000 mg of sodium per day, and keep lots of fresh fruit and veggies on hand (frozen green grapes are my favorite).

I'm watching the sugar and the carbs and drinking 4 to 5 liters of water a day.

Per the chile dog incident, I do slip up (or deliberately deviate, if we're going to be perfectly honest) from time to time, but these incidents are few and far between. 

It is a struggle, but it gets easier every day.

The thunderstorms have been spectacular, and the rain has been lovely.  Apparently a bridge washed out right after we crossed it on the train last night--NOT lovely, but pretty exciting.

Let me know if you need me to FedEx you some chile, Michael.  It's almost roasting time!

Warm regards.

Anne

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I've had in YEARS!  I can smell the Chiles even now! 

I'm trying to raise some here in South Carolina, but my success is limited. I bought Big Jim seeds online and the plants are just  now starting to bloom!  I still have til mid October before first danger of frost, but I'm having my doubts!

Frown

I'll keep your offer in mind! Cool

Thanks!

GSRon's picture
GSRon
Posts: 1126
Joined: Jan 2013

Hi Anne..  What I do.. is give myself an "allowance" of sorts.   I allow myself to have one bit of read meat per month... that way I am not cheating or slipping up.   However I have not had that one piece of "dead red" this year..   But having that allowance is cool..!   So when one of my pals does decide for us to go to a steak house.. no guilt... wonder when that will happen..??  Hmm...

On salt.. I do not miss it at all...!!   There is plenty of salt in almost everything.. you have to read every label..  It seems all the health food stores are stupid or think I am stupid..  many labels say "No Preservatives" yet they have plenty of salt... Salt is the original preservative..!  So even most frozen veggies have salt..  I use a lot of garlic and pepper for seasoning... and there are plenty of seasonings that can sway your tasted buds... time to experiment a bit..!

Ron

anmazon
Posts: 125
Joined: Jun 2013

And I'll definitely try that.  Maybe just stay away from the weiners in the future--i don't think I could have possibly chosen a worse red meat.  :)

The salt issue... I'm realizing now how much salt there is in EVERYTHING, and have adjusted my eating habits accordingly.  However, I've been addicted to table salt since I was a child. Salt, salt, salt on everything imaginable.  The last several months before my diagnosis, I had a sea salt grinder in my desk drawer at work.  Five or six times a day, I would take it out, grind up a nice little mound and pop it in my mouth. I was craving it so badly.

I didn't dare tell my doc about THAT, but it was probably a pretty good indicator that something was desperately wrong.

There are no longer any salt shakers in Casa Kircher, and the sea salt grinder has been disposed of.  And I am learning to like Mrs. Dash, and am experimenting with other spices.  If there was ever any doubt that I have willpower, this should prove it--I haven't touched salt since my diagnosis.

It's funny, it was easier to quit drinking almost 20 years ago than it has been to give up salt.

Thank you for your kind support, Ron

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

I am learning so much in just 36 hours of being here.  My doctor told me to load up on fresh vegetables and fruits, eat more fish, but didn't say a single thing about avoiding red meat  or limiting my protein intake!  Or my salt usage! They did say to limit organ meat (liver, etc) to once a week.  I've cut out caffeine, artificial sweeteners, and lowered my salt I take voluntarily because it felt healthier.  I've been drinking 8-10 8oz waters a day, minimum.  I don't smoke, don't drink....I have no vices at all anymore and I'm probably very boring now....

the last labs I had run, they said my kidney functions were high, which apparently is not good.  When I asked, all the doc would say was that the tests indicated that my kidney was not functioning at optimum capacity yet.  I think they used the phrase "hasn't gone hyper-dynamic yet" which I assume means it hasn't picked up the slack of the missing one. How can I take care of the anemia that I'm going through if I can't have red meat protein or liver?  I'm so confused right now that I'm not sure what I should be eating or not eating.  Does anyone have a link to a good RCC diet?  My doctor is not very forthcoming on information, but I think it's simply because he just doesn't know that much about kidneys...

so any help regarding diet or anything else will be greatly appreciated.

anmazon
Posts: 125
Joined: Jun 2013

My doc recommended a variation on the renal diet for me, limiting only protein and sodium.

 

100 - 120 grams of protein a day and 2,000 mg of salt.

I found a good renal cookbook on Amazon "Cooking  for David," which has some yummy recipes as well as dietary guidelines for what to eat and what to avoid. It was about $30 including shipping, but I've found it to be very helpful.

Anne

NanoSecond's picture
NanoSecond
Posts: 504
Joined: Oct 2012

This is one where you and I are in full agreement Tex.  I could not have put it any better myself.

I am tired of being told that I have some sort of "kidney disease". NO, I don't.  I have one very healthy kidney and I intend to do everything possible to keep it that way.

anmazon
Posts: 125
Joined: Jun 2013

it seems as though it is easier to lump us into the category of "kidney disease" than "cancer survivor."

They seem so disappointed that it was taken care of surgically, rather than chemo and radiation--like it was too easy to be "real" cancer.

Not easy by a long shot, folks.

Anne

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Taken care of by surgery, for many of us I'd say. 

Obviously there are numbers of RCC survivors facing the chamber of horrors that is Chemo, and other treatments.  Those numbers MAY include any of the rest of us who have a "cure" through surgery.

I believe/hope mine is cured by surgery. I'm latching on to that, BUT the small pragmatic voice in the back of my head says "for now."

Is that a downer?  No, I don't think so.  It is a reality that keeps me on my toes, keeps me keeping my appointments, keeps me doing the things I need to do.

Undecided

Pax y'all!

Michael

 

 

anmazon
Posts: 125
Joined: Jun 2013

You said it much better than I ever could.

Pax.

Anne

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

You do very well on your own! 

You don't need a mouthpiece!

Laughing

anmazon
Posts: 125
Joined: Jun 2013

red or green?

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Verde, seguro! Pero rojo también es buena!

Wink

anmazon
Posts: 125
Joined: Jun 2013

Verde as major, pero me gusta carne adovada De vez en cuando.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

For many of us including myself our Kidney Cancer is and was cured by surgery. This however is not a free pass to our Kidney health and Kidney disease which may arise over the years. Having only 1 kidney we must keep it in shape and if nothing ekse we must keep any high blood pressure under control.

 

 

Icemantoo

MDCinSC's picture
MDCinSC
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Joined: Feb 2013

I'll take the cure as long as it lasts!

anmazon
Posts: 125
Joined: Jun 2013

Thank you all for your wonderful support!

Anne

Digger95
Posts: 59
Joined: Jun 2010

Not a dumb question at all!

When filling out medical forms after my nephrectomy I always wondered whether I should check the box for 'kidney disease' or not.  According to my nephrologist the kidney he removed from me was pefectly healthy and functioning... it just happened to have a big old tumor attached to it.  In my mind there are distinct differences between the two...  kidney disease vs. kidney cancer.  Since the GFR in my remaining kidney is fine... when I fill out forms now I answer 'no' to kidney disease and 'yes' to cancer.  I believe that they are two separate entities.

Dig

anmazon
Posts: 125
Joined: Jun 2013

The things I learn.   Thank you, Dig.

Anne

icemantoo's picture
icemantoo
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They are two separate things. Having or having had one does not mean you will have the other.

 

It is important to remember though that having one kidney  makes us more susceptable to Kidney Disease especially if we have high blood pressure and as we grow older.

The purpose of my comments was to raise a concern about the possabily of kidney disease for those of us with one kidney not to eqate the two as being one in the same.

anmazon
Posts: 125
Joined: Jun 2013

Hey, Iceman.

I'm still pretty new at this cancer thing, and have learned a LOT in the nine weeks since my diagnosis.

As someone without much of a clue yet, I genuinely appreciate your efforts to clarify issues that, frankly, confuse the living hell out of me.

Thank you for your wisdom and patience.

Anne

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

 

Me, too.  I'm just sitting here reading and learning more and more...and definitely more than my doctor has ever told me.  He came in after the surgery and said "well, you know you have cancer, don't you?  It is called renal cell carcinoma."  I said "okay...what KIND of renal cell carcinoma?"  He looked at me like I had suddenly sprouted two extra heads and said "oh...it's, uhh...Chromophobe, which is the best kind to have if you have to have it at all."  No stage, no nothing, just told me that he got clear margins and that the tumor, while totally encapsulated inside the kidney at the midline, had started into the renal vein, But that was of no consequence."  That's ALL he told me.  I'm going to see if I can get a copy of my path report from his office.  Isn't he supposed to supply me with a copy, if I ask?  I may have to smack a doctor if he says I don't need that report. Undecided

 

I hope one day I can be as informed and knowledgable as you all are on here.

anmazon
Posts: 125
Joined: Jun 2013

Tillie, welcome. I'm sorry about what you're going through, but you couldn't have found a better, wiser, more supportive group.  That they're wise guys too helps a lot.

I've got copies of both my path and surgical reports--fascinating reading, though it makes me a kind of sick.  I still freak out when I read that the specimen they sent to the lab weighed 640 grams!  

It's been nine weeks since my diagnosis, seven since my surgery.  I thought the anxiety was going to kill me until I found this group.  I still have moments of abject terror, and most certainly will continue to do so; but the wisdom, compassion and humor in this group gets me through, one day at a time.

The more I learn, the more I understand that I have so much more to learn.

We're here for you.

Anne

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Very nice!

I love your engaging, positive attitude! 

anmazon
Posts: 125
Joined: Jun 2013

Laughing

You all are great!  

anmazon
Posts: 125
Joined: Jun 2013

Laughing

You all are great!  

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Or at least get your records and go elsewhere!

Sounds like he is treating you like a mushroom!

How do you treat a mushroom, you ask?

Keep it in the dark and feed it BS!

Time for a heart to heart!

GSRon's picture
GSRon
Posts: 1126
Joined: Jan 2013

Just a bit of my rambling here.. first, Tillie.. love the new Avatar..   Anne.. may I, Dare I.. suggest you become an Annie..?    As in Annie get your guns.??  I thnk of you gunning down this villian we call Kidney Cancer...!!!  :)

Me, well I do happen to have Kidney Disease.. my right Kidney has a couple of cysts in it... those have been there a long time and there are no signs of them growing.. whew..!   But my renal function is less than stellar.. so back to that good diet again.  I just remind myself that my food choice is closely related to my time above ground... that reality check does it for me.

Be Well A....!!

Ron - 3 weeks until I head for the Isle of Man..!  :)

anmazon
Posts: 125
Joined: Jun 2013

I like it, Ron.

It's funny, we were talking guns on the train the other night, and someone was horrified that, not only do I know about guns, but that I also enjoy shooting.  He suggested that everyone start calling me Dirty Annie, in honor of Dirty Harry Callahan.  Thankfully, I was able to convince him that Annie Oakley might be a better nickname all around.

As we seem to be on the same wavelength, Ron, I now rechristen myself Annie! 

Shooting down the villian we call Kidney Cancer.

I love it, Ron.

Annie

 

GSRon's picture
GSRon
Posts: 1126
Joined: Jan 2013

Whew..!!  I never know how some things I say will be taken... glad you like it..!!   Now the original Annie was famouse for her shooting.. but she was also known to be a bit... ahem adventurous.. heh...  :)

Ron

anmazon
Posts: 125
Joined: Jun 2013

Embarassed

So the original suggestion of Dirty Annie might not have been too far off base.

In a double entendre sort of way....

Annie

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Hi Tillie, I seem to be in the same boat as you, in regards to a lack of communication from my doctor.  I too, have learned what I know, from the wise men and women on this forum.  What I didn't know until reading thru this chain, is, I should probably know my kidney function!  It never occured to me to ask.  I had a radical nephrectomy, right kidney, on May 29, 2013, diagnosis, clear cell renal cell carcinoma.  If the function of my left kidney has been tested, I am not aware of it.  Is it a blood test? 

As for whether or not RCC patients who have lost their cancerous kidney have kidney disease, my doctor told me that although I do not have kidney disease, I am to be treated as though I do.  In other words, if a food or medication is contraindicated for people with kidney disease, I should avoid it.  He also suggested I have my pharmacy "flag" my account, as an extra precaution, which I have done. 

I think I'll do what Ann did and get my surgery and pathology report.  I'm sure it'll make for some interesting reading and I bet I'll learn a thing or two!

Finally, since my surgery, I have developed an insatiable hunger for sweets.  Almost a craving, I'd say.  Over the past year and a half, I have lost 75 lbs.  If I don't get a grip on this sweet tooth, I'll be right back up there, tipping the scales.  Is this normal?  My doctor says yes.  His explanation...it's normal to crave what we can't (or shouldn't) have.  At any rate, he didn't seem too concerned when I told him I'd polished off a whole pkg of Oreo cookies, by myself, in less than two days!  His lack of concern led me to think diet wasn't any more or less important after a nephrectomy vs before.  I can't help but wonder if other post neph patients experienced a post neph sweet tooth.

Without sounding grateful that all those on this site are, in some way, affected by kidney cancer, I am so thankful there are people out there willing to share their experiences.  For, as little as I know about kidney cancer, I'd know even less if not for CSN and it's wonderful participants.

Sindy

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

My hubby was referred to a Nephrologist. He is Dx'd at Stage 3 because he didn't understand the connection to salt and sugar being processed out of the blood by the 2 kidneys he had.  Again, the eGFR reading determined the Stage 3.  He has changed the way he eats -and now tastes the food, not the salt, and is stable at his level.

At the same first visit, I indicated to the Nephrologist that I'd had a nephrectomy due to cancer and what my eGFR runs (usually 37-41)  He said not bad for age and one kidney, but if I had need for him in the future, ask for a referral.  (Says the cute young man who doesn't look like he's out of high school.)

So we're both stable with CKD Stage 3.  More aware of food intake.  But watch out if you're holding a package of Double Stuff Oreo's-they don't last long at our house, either.

And yes, the bood work will show your results.  BUN (blood Urea Nitrogen), Creatanine, and eGfr (glomerular filtration rate) are related.  If one edges up, another will go down a few points.  You can so online to a number of sites.  Can't remember specifics, but "Blood Test Results", "Reading blood tests" or similar searches will pop up a variety of sites.  But always ask for a print out to take home to review.  If you see another Dr. (PC or Internist) get copies of those results, too.  I've noticed the labs in the 2 offices have slightly different standards for the norm on each test.  But it also could be that those that come from the oncology department are flagged as having a higher normal level than other patients in that clinic.

Good luck.

Donna

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

I'm getting ALL my test/MRI/CT results and my pathology results!  YEAH!!  I also went to my pain mgmt doctor for a shot in my hip and had him look at the MRI on my back from 3 years ago....you know. Just to see if anything had showed up back then. (The MRI was done because of chronic low back and flank pain in Louisiana). Anyhow, the scan DID show my kidneys and voila'!  the tumor was very visible back then!!  Why the heck don't people who read those things look at EVERYTHING on the scan instead of just one or two little spots?  This could have been caught and taken care of THREE years ago!!!  P*sses me right off!

Djinnie's picture
Djinnie
Posts: 751
Joined: Apr 2013

Hi Tillie, Snap! That is exactly what happened to me, my tumour was missed over a 3 yr period. I had regular check ups each year from having a previous episode with kidney cancer. The tumour was missed each time until last December when I had an MRI. Angry does not come close in describing how I felt, so I know where you are coming from.

 

Djinnie

todd121
Posts: 496
Joined: Dec 2012

Great question and I really enjoyed reading the very intelligent and reasoned responses.

I would like to add that my nephrologist (who teaches at the medical school and has authored text books and is an expert on measuring kidney function) wrote on my diagnosis following my nephrectomy and visit "Chronic Kidney Disease". I forget what stage he gave me....My left kidney is working fine. I asked him what that meant and he said "it means your overall kidney function in comparison with a normal person with 2 healthy kidneys is not as good and it needs to be followed". Hmmm. Ok.

Some of this is semantics I suppose. Of course our blood work is off because we have one kidney! And that's their simple definition of CKD....

On the deodorant front, I'm extremely allergic and have been since my early 20's. I keep myself clean, and that's the best I can do. If someone is offended, their problem not mine. Same goes for my lack of hair on my head. Haha. And I take CKD to mean: watch my remaining kidney, but I don't worry about it that much. I stay away from salt, NSAIDs, too much protein,  and watch my blood pressure and blood sugar. I think that's good enough. Oh, and I see my nephrologist every few months and let him look at my blood work.

I do put CKD on my health forms when I fill them out for a new doctor, mainly because I don't want him missing the fact that I have one kidney when he prescribes medication for me! I figure the more places I put information, the more likely they are going to pick up on what is going on. They aren't paying really good attention all the time. Have you noticed that about doctors?

Todd

anmazon
Posts: 125
Joined: Jun 2013

I can't begin to imagine how you must be feeling.  To know that the tumors were visible on scans 3 years ago and MISSED?

  I am eternally grateful for the fact that I have known and worked with my team of docs for nearly 20 years. Though I never expected to be on the receiving end of their tender mercies.

Reading your posts, I appreciate how very fortunate (even blessed, if you'll forgive me).

Please know that you are both in my thoughts and prayers.

Warmest regards.

Annie

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

 

Thanks, Annie.  I had the MRI done back in LA before we moves to FL, and when my pain mgmt doc here in FL looked at it the other day....heck, Ray Charles could have seen it with one eye closed!  That sucker was sizeable back three years ago!  I'm not a doctor, have never played one (on TV, anyway..wink! wink!) and haven't stayed in a Holiday Inn Express recently, and I had NO trouble seeing it before my dr pointed to it and said..."Damn!  There it is!"  From the size, I figure and so did he, that it has probably been hitching a ride for about 10 years or more.  One great thing about Chromophobe is that it is reeeeeeaaaaaallllll slow growing! Laughing

anmazon
Posts: 125
Joined: Jun 2013

But, Tillie, your post absolutely slays me!  

Not only are we two tall chicks, but we're both wildly irreverent with twisted senses of humor.

If laughter is the best medicine, you and I are well on our way down the road to recovery.

(And if I could please, please, please borrow your Ray Charles line?)

Warmest regards.

Annie

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

As we say here in the Deep South..."it's all you'rnn".  Annie, I figure if I can't laugh, then I have to cry and I am butt ugly when I cry.

anmazon
Posts: 125
Joined: Jun 2013

Tillie, you are a beautiful soul, and,  I am certain, a beautiful person, but I think everyone is butt ugly when they cry (and none so much as I).

 I don't know what I'd do if I couldn't laugh.

Annie

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