Understanding Renal Failure

[livecam]

A friend stopped me earlier while we were both grabbing a snack from the deli tray.  He has been been pre-dialysis for a number of years, has had symtoms, and has undergone treatment with high dose steroids and zestril over about 4 or 5 years.

This morning he said the problems were back and showed me two very swollen legs and ankles.  I asked how much kidney function he has remaining and the answer?  He said 85%!  If he was really at that level he wouldn't be having any problems so that couldn't have been right.  He did know his creatinine which he said was 4.  I didn't even want to go to GFR, a CBC, potassium, phosphorus or any of the other stuff we need to know about.

The point here is that we all need to know what our labs mean, what is normal, borderline, or bad news.  The labs are the only thing we have to go on that tells us the whole story.

Back to my friend, I asked him to bring in his labs so that we can review together.  Incredibly his doctor has never mentioned either dialysis or transplant.  How could this gentleman be treated for years without the topic of dialysis or transplant ever coming up? 

That is another question that needs an answer.

[KICKSTART]

I can only tell you a similar thing happened to me, for the 4 yrs i was treated pre-dialysis , then when my results began to get worse i was informed of treatment (dialysis) but not given any facts about it. It seems some doctors work on the 'need to know' basis and think we dont need to know till that day gets close!

[Joe Paul]

Id kill for 85% kidney function. The Doctor probably wouldn't want to explain something thats probably years away.

[stauffenberg]

If your friend has lost rather than retained 85% of renal function, his comment would make sense.  Since dialysis replaces about 10% of normal renal function, it is sensible to start it when residual renal function approached falling below that value.

Doctors tend to regard a patient having to go on dialysis as a death sentence, so they are very reluctant to say much about it to the patient in advance.

[livecam]

If your friend has lost rather than retained 85% of renal function, his comment would make sense.  Since dialysis replaces about 10% of normal renal function, it is sensible to start it when residual renal function approached falling below that value.

Doctors tend to regard a patient having to go on dialysis as a death sentence, so they are very reluctant to say much about it to the patient in advance.

I can laugh a little now about statistics and how they relate to one's chances of survival.  When I started dialysis a family member checked dialysis survival statistics and announced that I had about 26 months to live.  That was 8 1/2 years ago and unfortunately he is no longer with us.  He had another issue entirely but the point here is that those statistics don't have to mean a death sentence of any kind.  Life is good and I'm not planning to check out anytime soon.

[del]

Hubby doesn't plan on checking out anytime soon either.  As long as you look after yourself you have have a very long an "healthy " life on dialysis.

[okarol]

OK HERE'S MY RANT: I took Jenna in to a nephrology group at UCLA when she was 14 years old as they were checking her because of an ultrasound that alarmed our pediatrician. A young doctor came in after all the tests were done and said: "What were her symptoms?" I told him that she had started to wet the bed. He said: "No flank pain? No headaches? No bladder infections? No fevers? No swelling?" No No No NO NO - Why? He said (in front of Jenna) "Her kidney's are failing. In 1 to 5 years she will need dialysis and a transplant." Huh? I still could scream when I remember, first, because Jenna was always very healthy, and second, because the clueless doctor told me - without any warning - in front of Jenna, and my reaction scared the hell out of her. Anyway, I had Jenna leave the room and gave that guy an earful. He said "She's 14, she needs to know." I said "That's not for YOU to decide!" I told him to go home and ask his wife how she would feel, if she got that devastating news in front of one of their kids. So my point is, you get what you get. Some doctors blurt out everything. Then the next doctor Jenna had for 3 years was cat and mouse about the whole subject, til her kidney's literally failed in his lap and she had to have emergency dialysis. Ok I am done.
 

[st789]

From my own experience, I would have prefer my nephrologist told me about what to expect.  My family was just as clueless as I am.  There was no adults around to guide or inform me of what to expect.  I was a passive not proactive patient.  I was 17 when I was diagnosed with this chronic condition and my kidney fails when I am at the age of 24.  Until the moment of actually dialysis, I have never heard of the word dialysis or kidney transplant.   Sheeeezzzzzz.

I guess sometimes it is better to be scare early and be full inform of what to expect than going through the whole process blindly.

[tweetykiss]

 

To be quite honest, I am getting somewhat worn down by this whole thing just when my life is starting and I don't find it when I am still very young that I am already a caregiver....this is really starting to take a toll on me and he never does anything around the house........I CAN'T do it all....then no one is even helping in the care of him......

[Sluff]

Life is like a box of chocolates, you just never know what your going to get.

[keefer51]

I was told when i was 11 that i wasn't to live long because of my one kidney. Well it lasted till i was 38. It may have lasted longer if i didn't have a operation. I was borderline all those years. I remember sitting in a room with my father and the doctor and asking these questions. Things were different then. I lived with the thought all that time. No one really knows for sure.

[st789]

As for helping around Tweetykiss, when I was on dialysis, I did not help around much either unless I am in a good mood or have good energy.

I think the trick here is to recognize your husband's mood and energy then it would be easier to ask for his assistance.  Sometimes voluntary action is better than demanding your husband action.

[angellady07]

I usually ask for a copy of my labs.When I started to decline my nephrologist with a sandwich in his mouth informed me that my labs were not good.I couldn't believe his approach.I felt so insignificant.His explanation for the rude behavior was low blood sugar.I certainly wouldn't want him to pass out while he was giving me such crucial news.He proceeded to tell me to ask any questions now because I shouldn't expect him to have time to answer them later.Sometimes, I wonder if the docs are really human.From that point forward I decided to take matters into my own hands and research my labs.Sorry for the rant.I guess I just needed to vent.

[st789]

I feel the same too like it is a one way street but we do talk about sports.

[kitkatz]

Information on your illness? Come on folks, let's be stinking realistic here.  You do not need any information on your illness.  Make an informed decision based on what we (the medical profession) tells you at the time all of this is going down.

[thegrammalady]

I usually ask for a copy of my labs.When I started to decline my nephrologist with a sandwich in his mouth informed me that my labs were not good.I couldn't believe his approach.I felt so insignificant.His explanation for the rude behavior was low blood sugar.I certainly wouldn't want him to pass out while he was giving me such crucial news.He proceeded to tell me to ask any questions now because I shouldn't expect him to have time to answer them later.Sometimes, I wonder if the docs are really human.From that point forward I decided to take matters into my own hands and research my labs.Sorry for the rant.I guess I just needed to vent.

both my neph and the head doctor at my clinic told me this on the same day. my doc was rather blunt about it as usual he simply said "you're smarter than the average dialysis patient" the clinic doc said it this way when we were having a meeting regarding the complaints i was having. (it never hurts to go to the top, it some changes aren't made i'll go over his head too) any way he said something to the effect of.   the dynamics of the dialysis patient are changing and the dialysis comunity is going to have to change along with them, as more and more baby boomers become dependent on dialysis. in general they are better educated, ask more questions and EXPECT answers. they will not just accept the word of a doctor or dietitian or nurse, they want to know why and we are going to have to get use to giving them logical and acceptable answers. (i think i like this man, he realized real fast that i have a brain and know how to use it)

i get my labs from the nurse as soon as they come in, the same printout the doctor gets. it's much more comprehensive than what the dietitian gives out a week or more later. i've made it a point to know whateach result means and why they are checking that specific level. if i have questions i ask the doctor and keep asking questions til i'm sure i understand. i also research on line. the dietitian doesn't like talking to me, i think there are some things i know more about than she does. but then this is my life and i want to be around to see my grandkids graduate from college. a great-grandmother would be a wonderful thing to be.

[jbeany]

I actually had a nurse ask me what a lab result meant.  One of the other patients had asked her what RDW meant, since his was low, and she didn't know what it stood for.  My docs and nurses have figured out that I'm pretty well informed, and that I intend to keep track of things myself.

As for finding out, I knew dialysis was in my future for years.  When I got close to actually needing it, I looked up the information online - which is how I found this site, and found out about the NxStage.  I refuse to sit on my hands and wait for the docs to decide if they think I need to know something.

[meadowlandsnj]

The point here is that we all need to know what our labs mean, what is normal, borderline, or bad news.  The labs are the only thing we have to go on that tells us the whole story.

That's an excellent and important point you make.  It is crucial that we understand and know what our lab values mean.  I always ask for mine and I don't want the abridged short version the dietician gives me.  I want the whole three sheets.  I notice soem nurses give me "the look" when I ask for the complete results but I don't care.  I question them when I have to also.  It's our lives in these tests.
Sometimes I think they're afraid of an informed patient, we ask too many questions, we actually question the doctors.  I do at least. 

Donna       

[del]

We always get a copy of our lab results as well.  We are questions if something has changed. Want to know what we can do to make the results better.  Have done a lot of research on kidney failure and dialysis. If the nurses in center wanted to know what foods were high in phos or potassium they would always ask hubby.  He often told them things they didn't know!!

[angela515]

When I was 12, I was dx'd with Lupus. By the time I was 15, my kidney's were failing. Since I started getting deathly sick so young, and had a few "almost died" episodes before my kidneys started failing, I was very much informed of my medical status and situation, and demanded it to be that way. They first told my kidneys were failing, but I did not fully understand I would need dialysis eventually or transplant, because they quickly started me on cytoxan (a form of chemo) and after 18 months of that, my kidney function reversed to normal. Then a few after that, my kidneys started failing again, and this time they wanted to do chemo again, but I had no insurance... so the dr literally told me " we will see you in about 5 years when your ready to start dialysis and the goverment will pay for treatment", If I knew what dialysis fully was then, I would of fought tooth and nail for someone to help pay for chemo again. 

[livecam]

A friend stopped me earlier while we were both grabbing a snack from the deli tray.  He has been been pre-dialysis for a number of years, has had symtoms, and has undergone treatment with high dose steroids and zestril over about 4 or 5 years.

This morning he said the problems were back and showed me two very swollen legs and ankles.  I asked how much kidney function he has remaining and the answer?  He said 85%!  If he was really at that level he wouldn't be having any problems so that couldn't have been right.  He did know his creatinine which he said was 4.  I didn't even want to go to GFR, a CBC, potassium, phosphorus or any of the other stuff we need to know about.

The point here is that we all need to know what our labs mean, what is normal, borderline, or bad news.  The labs are the only thing we have to go on that tells us the whole story.

Back to my friend, I asked him to bring in his labs so that we can review together.  Incredibly his doctor has never mentioned either dialysis or transplant.  How could this gentleman be treated for years without the topic of dialysis or transplant ever coming up? 

That is another question that needs an answer.

Phil brought his labs today and we took a look.  From the labs it looks like he's in really good shape.  Creatinine 1.16, GFR is 59.99%, HGB was a little low at 12.9...but the real problem is the swelling in his legs and ankles.

His kidneys seem to be spilling major amounts of protein.  That was 210.  Maybe thats the reason for the swelling.  Funny that kidneys that seem to be performing so well otherwise would be dumping so much protein. 

Where's Dr. Evil when I need him?

[jbeany]

What's his blood pressure?  My ankles and legs swelled when my bp went thru the roof.  When the docs got the bp under control, the swelling went down.  It was the first sign of kidney failure that I had, but I was a long way from dialysis - I didn't start for 10 years after that.

[Meinuk]

Ok, a bit more of my story...  (It is Friday, and I don't feel like working....)

When I was 13, My mother died with ESRD - PKD.  I already knew that I had xtra-large kidneys, multiple cysts, and was well taken care of medically. (maybe I was a bit too informed for a 13 year old...)

My first job during college was at a hospital in the Nephrology/Transplant/Hemo/CAPD service.  I was a part-time Unit Assistant. I saw people at their sickest and people at their happiest (post transplant) and every one in between.  I transcribed charts, and saw some really bad numbers - and I saw some miraculous recoveries for a year, it was a great informative job.  I loved the people that I worked with - I even aspired to become a Doctor, but math is a chore for me.  I never got past college algebra.  Really, I think that knowing that I had a relatively short time being asymptomatic, I should make the best of it. So I did.  When I realized that I wasn't going to medical school, I took off and travelled.  College waited for me.

Aside from a couple of debilitating kidney infections, I has a pretty "normal" life.  I watched my BP, ate as low protein as I could manage (MEAT -  my weakness) tried to limit my salt, stayed hydrated and for the most part went to the Dr.'s regularly.  I think that I was functioning well at 50% for quite a few years, then my numbers started slowly dropping, I hovered around 25% for a couple of years, then hit around 15% - had my fistula placed and got put on the transplant list, visited the Dr. monthly, took Bicitra for acidosis, Chromagen & Procrit for anemia & Nephrovite for a multi-vitamin.  that kept me going for 18 months, then this winter - it hit. 

I tried to fool myself into thinking that I just had a really bad cold.  As a matter of fact, I had this great vacation planned (it involved COWBOYS and BARS!) I had the nerve at 5% GFR to tell my Dr that we could start my dialysis after I got back from my vacation.  He laughed at me. So, in January 2007 I started my M/W/F routine...  I have no regrets (well, maybe that Karaoke/Tequila night in Boston...but I digress...) - So, today, I feel like I have two jobs, my normal 10 - 5 and my part-time job, managing my health.  Which means Dr.'s visits, Dialysis, Insurance issues and your every day exhaustion coupled with insomnia.  Things that every person on this board is intimately aware of. So, there are my  and my understanding of renal failure - now, back to work....