Update on my kidney function

mp327

 

 

 

I decided that before I go see the nephrologist on December 4th. for a follow-up to discuss all of the lab studies that it would be a good idea to see my internist and get her take on all of this business about my kidneys.  I made an appointment and saw her today.  She told me that it is her opinion that I definitely do have Chronic Kidney Disease.  She received a summary of my visit with the nephrologist, in which he stated that I have STAGE 3 CKD.  This obviously was NOT what I wanted to hear.  The day I saw him, he told me Stage 2, based on the lab results that I took with me, run by my internist and my oncologist.  I presume that he upped that to Stage 3, based on the results done at his office, which included blood work and the 48-hour urine study. 

I usually am very stoic, but I could not maintain my composure today and got a little upset when she told me this.  I was ready to make a case for why I should have the tests repeated, as I was not instructed to do the things I mentioned in my last post prior to having the test (i.e. avoiding exercise, caffeine and protein for 48 hours prior to the tests).  Her feeling is that the nephrologist wanted to get a true picture of my kidney function, based on my normal activities of daily living and my diet.  So, I guess I lost that argument.  She advised me to continue drinking at least 70 ounces of water per day, as advised by the kidney specialist.  She has also cut my dosage of 81mg. aspirin (for my cholesterol) to 1 tablet every other day.  Apparently, aspirin can damage the kidneys.  She has also discontinued my Niacin (again for cholesterol management) to give my kidneys a break.  She is going to repeat some lab work in mid-January and see me a week later to discuss the findings.

I also took this opportunity to discuss with her my opinion that I have some malabsorption issues.  My symptoms lead me to believe this is happening to me, such as diarrhea, fat in my stools (obvious due to the "peanut butter" color, consistency, and oiliness--my apolgies to all of you who are fans of peanut butter!), hair loss and the inability to gain weight, no matter what I eat.  I was on vacation for a week and ate lots of crap, for lack of a better term, and temporarily gained 2 pounds, which are now gone, despite eating more crap since I've been home, mostly due to stress.

We discussed the occasional intestinal blockages and my fear of foods that are actually good for me.  I told her that I must cook fruits and veggies to the "mush" stage now--nothing raw!   I also expressed my frustrations about diet, because it seems that some foods that I should eat to avoid blockages may not be good for my kidneys and vice versa.  I AM SO FRUSTRATED!  It seems the only thing I can do right now that is good for me is drink water, water, water, and we've all heard horror stories about what's in that!  Well, I'm drinking a glass of wine as I type this and I don't give a ****! 

Okay, well this bad girl is going out tomorrow night for Mexican food.  Lots of sodium and fat, washed down with a margarita.  Sunday should be very intersting.  LOL!  I hope everyone has a good weekend.

Martha

EvelynB

Martha

I am so very sorry that you are going through this. It seems like you have tried so hard to do all the right things. I don't blame you for throwing caution to the wind tonight. Sometimes I do the same thing. Enjoy that Mexican food and margarita tomorrow night. 

lab guy

Geetings from the new kid on the block

Martha, I have only been here a short time but have read a lot of posts. You are always the one comforting people with advice and knowledge as they struggle through this "Hell on earth" treatment and recovery. That being said, I am not here to make suggestions or offer advice, as I am sure your knowledge on your situation dwarfs mine. Rather I would like to state that myself, as well as I am sure all the others you have touched and helped, wish you all the best. I have always thought "good things happen to good people" and if that is the case you have nothing to worry about. Steve  

mp327

EvelynB said:

Martha

I am so very sorry that you are going through this. It seems like you have tried so hard to do all the right things. I don't blame you for throwing caution to the wind tonight. Sometimes I do the same thing. Enjoy that Mexican food and margarita tomorrow night. 

EvelynB

Thank you so much.  I may not have a margarita tomorrow night, but the wine I had tonight was so good!

Martha

mp327

lab guy said:

Geetings from the new kid on the block

Martha, I have only been here a short time but have read a lot of posts. You are always the one comforting people with advice and knowledge as they struggle through this "Hell on earth" treatment and recovery. That being said, I am not here to make suggestions or offer advice, as I am sure your knowledge on your situation dwarfs mine. Rather I would like to state that myself, as well as I am sure all the others you have touched and helped, wish you all the best. I have always thought "good things happen to good people" and if that is the case you have nothing to worry about. Steve  

Steve

Thank you so much for your kind words and good wishes for me.  I am trying to absorb all the information I can about this new and challenging disease.  I know I have a lot to learn if I want to help myself as much as possible.  I hope no one will mind if I continue to post about this on the anal cancer board, as I have to believe that in some way, the treatment I had for anal cancer has contributed to this and, sadly, it could very well happen to someone else here.  Therefore, I think it will be worthwhile to share what I learn.  I guess if others are not interested in learning about chronic kidney disease, they will just skip my posts.    Thank you again for your friendship and support.

Martha

TraceyUSA

UGH

I'm sure this was definitely not what you expected to hear, Martha.   

I remember being told long ago that every medication we take either goes through the kidneys or liver.  Which amazed me at the time.  So, I'm sure our treatments do play a large part in your disease.  Either way, I see no reason why you should not keep posting here.  It was part of your life post AC.

Enjoy your Mexican & I say have the Margarita!   :-)

Thoughts & Prayers,

Tracey

lab guy

mp327 said:

Steve

Thank you so much for your kind words and good wishes for me.  I am trying to absorb all the information I can about this new and challenging disease.  I know I have a lot to learn if I want to help myself as much as possible.  I hope no one will mind if I continue to post about this on the anal cancer board, as I have to believe that in some way, the treatment I had for anal cancer has contributed to this and, sadly, it could very well happen to someone else here.  Therefore, I think it will be worthwhile to share what I learn.  I guess if others are not interested in learning about chronic kidney disease, they will just skip my posts.    Thank you again for your friendship and support.

Martha

Keep posting

Martha, I welcome, as I am sure others do, any and all information of your experience. Like you said, we could experience the same sometime and knowledge is priceless. They have done some pretty radical things to our body (as my side effects are telling me right now) so who is to say what lies ahead? Steve

sephie

so sorry

martha,  well i am furious for you..... this tx just tears our bodies up which is why some purists do not take all the chemo and radiaiton..... seems like it is always something that affects us.... yes, please keep posting all info and etc.... it helps all of us....i remember from my tx protocol that mda emphasized   water water water....it poured out of me due to diarrhea but i would wake up in the middle of nite and drink a glass.... i hated water so was hard to do...then gator aid.....ugh..... keep on asking questions and try not to get discouraged..... hard , i know..... thanks again for your info.....hugs....sephie

z

Martha

I am sorry to hear this.  I know you will do whatever necessary to fight this.  I hope your kidney dr will put this in perspective and indicate all the good things you will need to do for your kidneys.  I know you will do them. 

Please keep us informed, I learn a lot from reading your post. 

I would have the margarita too, along with the mexican food, that sounds good.

I wish you well. Lori

AZANNIE

Martha

I'm so sorry you're dealing with this. You're the inspiration on this board and the go to person for information. This treatment does a number on our bodies. It's a catch-22.

Mexican food sounds good - enjoy!

I'm beginning to wonder if I have a malabsorption problem. I can't seem to gain weight and now this bowel issue has hit. 

Yes, please keep posting about your latest health issues.

Wishing all the best!

 

Ann

 

mp327

AZANNIE said:

Martha

I'm so sorry you're dealing with this. You're the inspiration on this board and the go to person for information. This treatment does a number on our bodies. It's a catch-22.

Mexican food sounds good - enjoy!

I'm beginning to wonder if I have a malabsorption problem. I can't seem to gain weight and now this bowel issue has hit. 

Yes, please keep posting about your latest health issues.

Wishing all the best!

 

Ann

 

Thank You!

Thank you, everyone, for your words of support and encouragement.  As you can imagine, I have more questions about all of this when I return to the nephrologist.  I joined a couple of online support sites for people with kidney disease, but have so far found them to be of little help to me.  I was hoping that communicating with others going through this would be beneficial, just as it is for me to be on this site and two others regarding anal cancer.  You all have been so supportive and helpful to me through the years and I appreciate it so very much!  I was hoping to get in a group for CKD that would offer me the same level of support.  I am going to keep searching for a better support site.

I hope everyone is having the best possible Sunday and thanks again for the support and not minding if I air my frustrations about this new health challenge.

Martha

eihtak

mp327 said:

Thank You!

Thank you, everyone, for your words of support and encouragement.  As you can imagine, I have more questions about all of this when I return to the nephrologist.  I joined a couple of online support sites for people with kidney disease, but have so far found them to be of little help to me.  I was hoping that communicating with others going through this would be beneficial, just as it is for me to be on this site and two others regarding anal cancer.  You all have been so supportive and helpful to me through the years and I appreciate it so very much!  I was hoping to get in a group for CKD that would offer me the same level of support.  I am going to keep searching for a better support site.

I hope everyone is having the best possible Sunday and thanks again for the support and not minding if I air my frustrations about this new health challenge.

Martha

Martha......

I was so sorry to sign in and read this update. I feel it is truely important to celebrate the status of NED when we are given that status, but I have always felt that the teatment of this disease leaves us in a position of continual "dealing" one way or another with related issues. That being said, you have been remarkable in your ability to educate yourself and others on ways to "deal".....and so once again you will.

Never ever apologize for seeking support here as striving for whole body health is something we all share. I do hope you can connect with a resource that can be of help in answering any of your questions and I will surely pass on any info I find.

Enjoy your Sunday as well, and the upcoming season of thanks!

Be well.......

katheryn

mp327

eihtak said:

Martha......

I was so sorry to sign in and read this update. I feel it is truely important to celebrate the status of NED when we are given that status, but I have always felt that the teatment of this disease leaves us in a position of continual "dealing" one way or another with related issues. That being said, you have been remarkable in your ability to educate yourself and others on ways to "deal".....and so once again you will.

Never ever apologize for seeking support here as striving for whole body health is something we all share. I do hope you can connect with a resource that can be of help in answering any of your questions and I will surely pass on any info I find.

Enjoy your Sunday as well, and the upcoming season of thanks!

Be well.......

katheryn

katheryn

Thank you for your comments.  I agree totally with you that after going through this treatment, whole body health is vitally important.  And I truly believe that many of the maladies we may suffer post-treatment can be, in some way, connected back to the radiation and/or chemo.  At 62 years old, I still have the occasional zit.  I'm blaming that on my treatment too! 

Martha

Lorikat

oh Martha...  So sorry for

oh Martha...  So sorry for all of this less than good news.   First Cancer then chronic illness from the "cure"...    Go enjoy your Mexican food and Margarita!

RoseC

Martha, I'm so sorry you're

Martha, I'm so sorry you're having to deal with this. Reiterating what others have said, yes, please keep posting your experiences with this. Your experience and knowledge are very valuable to all of us. 

I'm almost 62 now (I believe you're about the same age as me). I do have decreased kidney function although no doctor has ever mentioned or recommended any changes in lifestyle or treatment for the decreased kidney function. Kidney function does decrease as we age, but I definitely wouldn't think stage 3 CKD is 'normal aging' - I mean, 62 isn't really 'aged' nowadays.

I'm so sorry you're dealing with this. I sincerely hope things get better.