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Just needed very badly to vent...

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

I had a nephrectomy in May of this year.  I am still a little fatigued, but am now starting to feel "human" again.  Prior to this, in 2008/2009, I had breast cancer with lymph node involvement...had mastectomy, removed most lymph nodes under my arm, had a year of chemo and I had 30 rounds of radiation.  Two years later, had a second mastectomy, prophylactically, as after 3 biopsies, they found that the tissue in that breast was changing and they didn't know why...but said it was "troubling."

Ok, so, it has been quite a bit of stress and surgeries and cancer battles in just a 5 year period.

I saw my primary today for a regular check-up.  She chastised me for gaining a bit of weight (I admit it).  And she chastised me when I said that I become fatigued many afternoons.  She told me that I cannot use my latest surgery (the nephrectomy) as an excuse forever, in order to sit around and do nothing.  That I was certainly healed by now.  That I need to push myself.  Seriously?  Then, she told me that she was not happy with my kidney function numbers and the next ones had better be improved.  It was at this point that I truly wanted to just cry.  Can one really improve those numbers in some way?

I'm not a lazy person.  I never have been.  I DO get tired at times.  I don't use cancer/treatment as an excuse to sit around.  I do try.  I did gain a little weight, (6 pounds) but I don't intend to keep gaining weight.

Anyway, I just needed to say all of that and I didn't want to burden my family with it.  So, thank you in advance for letting me get it out here.  

CR

TillieSOK's picture
TillieSOK
Posts: 237
Joined: Jul 2013

I think you either need to find a new primary care doctor who actually understands what you are going through, or you need to provide her with a " clue by four"!  I am STILL fatigued after 4+ months and it was explained to me that because the kidneys make the red blood cells that carry oxygen, and you are down one kidney, you are going to be tired until the remaining kidney starts growing and taking over for the lost one.  Sorry about the run on sentence.  Also you might very well be anemic.  I don't know of any way you can control your kidney function results with your mind....if you figure out how, let me know, cause my kidney and liver function results are NOT "happy makers" either.  Hang in there.  Others will chime in and let us both know if we can control our kidney function ourselves.

srbelle1
Posts: 123
Joined: Jul 2013

I agree that you need to change your primary; the comments were insensitive and unprofessional as well as ignorant.

i had double mastectomies 21 years ago and the blood loss as well as trauma cause fatigue; you just had another major surgery 3 months ago and saying that it was an excuse is offensive.

my husband will be having a radical nephrectomy in 2 weeks and the surgeon just told us recovery could take a minimum of 8 weeks with lots of rest.

vent away, then fire your primary.

sarah

Sandi45
Posts: 25
Joined: Sep 2013

First of all I want to tell you I am sorry she gave you such a hard time. Personally? I would be searching for a new primary doctor. 

I would speak to your nephrologist about your numbers and how you can change them. They know a lot more about this stuff, I have found that out by talking to them after my primary couldn't answer any of my questions.

I had a full neph in 2006 and it took me a long time to get back up to full energy. I don't know how old you are but I was 41 at that time and now at 48 I am going to have a partial of my other kidney and I am sure it will take a while to get back to my normal energy.

Hugs!

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

Thank you so much for understanding.  I just have tried so hard to get back to "normal", whatever that is.  And I came away feeling both down, as well as guilty...like I should be doing more.  And I don't know, maybe I should.  Maybe I should try and push through the fatigue when it comes on.   

@Sandi45, I will be 60 in a few months.  I don't know, maybe that is helping to keep my energy level a bit lower than it used to be.  I just don't want to have to feel this badly when I see a doctor.

I appreciate you all "listening" to me.  It really does help to talk about it and I think I need to do as you suggest and think about getting a new primary.

Thank you again,

CR

GSRon's picture
GSRon
Posts: 1253
Joined: Jan 2013

Geeesh, and I thought only men were so insensitive..  Sorry you had to hear that crap..!  Go at your own pace.. and then find a new Dr..  I agree with the other comments.. any Dr should know you have been through Heck and back...  Hope you stay well for a long time now..!

Ron

izzycohen
Posts: 64
Joined: Aug 2013

That is the purpose of this forum.  Sounds like the GP thinks your kidney function is the result of some sort of irresponsible behavior.  You deserve better. 

I'm so sorry you have to go through all of this.  Thinking of and praying for you.

 

Izzy

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

CR,

 

 

Like you I had a Nepherectomy at age 59. Not fun.

As far as Kidney function it is not going to be normal after losing a kidney. Period. After 10 years my GFR went down to 41 and than after seeing a Nephrologist and getting my blood pessure down it is back up to 47. If your number is anywhere near 60 your GP's comments were uncalled for. Unfortunately when you reach my age in 11 years your GFR will be lower because age is one of the things that causes reduced Kidney function which we can do nothing about.

Let this be the last bad thing that happens to you. You have had enough for a couple of lifetimes.

 

Icemantoo

Eims's picture
Eims
Posts: 420
Joined: Feb 2013

ok i am just gonna come out and say it....what a *****!!!!!!  yep i am with everyone else...a new doc is in order for sure.  you were not asking for sympathy with her but a little empathy wouldn't go amiss.  of course you are still feeling tired and to be honest pushing yourself could do more harm than good.  CR1954 my doc actually gave out to me for intending to take up running 6 months after my op.  she said that it takes 1 year and yes thats what i said 1 year for your body to adjust to losing a kidney!!  i am going with that and just easing myself back to fitness.  i must admit i started to feel a bit unhealthy in myself so i joined slimming world and i have lost just over a stone and i feel great.  it just takes time and you go with how your body feels.  

eims x

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Ouch! If that was your Doctors idea of a pep talk she has been studying the wrong manual!! You definately don't need that sort of medical care, it is non productive. You will have this fatigue lingering for some time, also there is the psychological aspect which depletes the energy. I know what it is like having cancer hanging over you. I had oral cancer when I was in my twenties, then  bowel cancer and kidney cancer twice. Your body has to struggle back from every trauma and it takes it's own time, you can help it, but not force it.

For the benefit of your health you definately need to find a more supportive doctor.With regards to your kidney function tests were you fully hydrated that day? as it is important to keep your fluid levels up. I wondered have you ever tried nettle leaf tea, it helps to improve the kidney function, so does camomile. I drink them every day instead of regular tea. I also use ancient minerals transdermal magnesium oil and CoQ10 to help restore my energy levels, I find that really helps.

Keep your spirits up, you're not at fault here your doctor obviously missed her vocation as a demolition expert!!

 

Djinnie x

 

Jenmere
Posts: 5
Joined: Sep 2013

WOW...I am stunned.  Your GP should be a partner in your health not ripping you apart for 6 stinking pounds and things that you have ZERO control over! I can fluctuate 6 lbs with a beer and wings during a football game! I am with Eims...what an a-hole!

elpasorudy's picture
elpasorudy
Posts: 78
Joined: Jan 2013

There is no excuse for bad manners. Your doctor is out of line. The worst thing doctors can do is to harm their patients, and this doctor is harming you by putting you through emotional stress. It takes time to recover from kidney surgery. So don't beat up on yourself. Things will get better. Sending you positive wishes: May the sun bring you new energy by day. May the moon softly restore you by night.  May the rain wash away your worries. May the breeze blow new strength into your being. May you walk gently through the world and know its beauty all the days of your life. Let us all know how you are progressing. The group is here to support you in any way. Take care.

mom2two
Posts: 48
Joined: Aug 2013

I am so sorry that you went through that humiliation. It was completely unfounded. 6 pounds can pure water weight! 

 

Please, please do not go back to this doctor.

 

(((HUGS)))

donna_lee's picture
donna_lee
Posts: 407
Joined: Feb 2009

My nephrectomy was at age 63, 7 years ago.  It takes a long time to get to your new "normal".  Think I'm finally about the stage I was around 10 years ago, when cancer was eating me inside-out.  You will never have the same results on kidney functions as before surgery, so your old PC is full of b---.  Function levels vary from week to week almost depending on your age (and we do get older each year), whether you have been exercising vigorously, how hydrated you are at the time of blood work, and other factors.  If you are on any BP meds, that can affect both eGFR and Creatanine.

An eGFR of 31 is good for me and neither my PC or Oncologist give me grief over it.

I dropped 10-15 pounds in less than 2 weeks when I was told I had cancer, then another 10 during recovery from surgery and the pancreatitis episode.  Of course, I've found it all, mostly on my butt.  If you can just maintain the weight you are now, even if the Dr. says it's bad for you, you'll be doing well.  Going into winter is a heck of a time to try to lose weight, especially if you tire easily and are still recovering physically and emotionally.  Do what you are able...and then try for a little more next month.

The journey isn't easy, but you're already a survivor, and you'll survive this one, too.

Good Luck.

Donna

LynninNC
Posts: 12
Joined: Jul 2013

CR, it is very unfortunate you have had that experience. She obviously has never been on your journey. To make positive spin here....I would say that you should use this to get angry. Anger can be very motivating. Replace her yes, but then 2 months from now when you have used your anger to get to a really strong place call her up and report to her how well you are doing...just to prove her wrong!   I had a full open incision nephrectomy 11 months ago and I am not sure I felt "normal" until May or so.     I am curious about your reported kidney function. I never get any kidney function numbers except my creatanine levels. What is the GFR or CFR or whatever you guys are referring to? (I wish I could see all the posts when I am replying, not just the initializing one! I might sound more informed if I could reference back!) My blood work ups have a blank in that line. I am in a clinical trial at Duke and have blood work done every two months now.      Anyway CR, take your time and listen to your body....but get mad and prove her wrong!  All my best. L~

TillieSOK's picture
TillieSOK
Posts: 237
Joined: Jul 2013

 

My family practice dr. was very upfront with me.  He said he didn't know squat about kidney cancer, so he couldn't answer very many of my questions.  He said that was why he was referring me to a urologist/nephrologist and an oncologist.  He said he would take care of my general health and leave the cancer stuff to the big guns....for which I thanked him profusely! LOL. I LOVE honesty.  If ya don't know what you're talking about when you talk to a cancer patient, you need to shut up and sit down, and let someone else talk! Sealed

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

I never expected that I would get such compassionate, caring responses.  Along with a great deal of information.  I thank each and every one of you for giving me the opportunity to "bare my soul," as it were. 

All great advice and I will take it to heart.  I have a wonderful oncologist and a urologist whom I trust completely, and I feel lucky to have found them.  So, I know that I can find a new primary too.

Thank you again!

CR

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

I had just posted that I think it is wise to trust your doctors, it is also wise to be sure you and your doc are on the same page. We are niot just patients. We are health care consumers. Choose carefully. Fox.

angec's picture
angec
Posts: 622
Joined: Mar 2012

WOW! So sorry you have had to endure that. I don't know if you have a long standing, personal relationship with this primary doctor or are very close that they feel they can speak to you this way.  But there are many reasons to gain weight after this surgery like water retention, affects from medication, depression, fatigue, menopause. Six pounds is hardly anything to worry about, let alone say those very insensitive things to you.  You went there to get some tlc and came out of there feeling like you went into a war zone, I am sure! 

I had an experience with one doctor i went to when i first came down with chronic fatigue syndrome and was besides myself that i could not function. He told me straight out that many people claim they have fatigue, especially if they are lazy and looking for a way to get out of work. That was surely not me! I am type a, just the opposite of lazy,  a workaholic!

Another doctor told me that my mom's disease will surely take her out and that she was living on borrowed time.  Not in such a nice tone either.  So, needless to say those two doctors are not seen by me anymore!

I would highly consider finding another doctor even though it is  hassle switching over.  But if you decide to stick with this one, be sure to let the doctor know you are not lazy and the rudeness is offending you.  Some doctors think they are God and know it all and are above the patient.  You know who you are, that is all that matters!

 

 

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