dialysis

Good luck with choosing, its not like picking if you want carrot cake or chocolate cake is it lol that is how I described it to my neph.

Hi,

First of all well done for remaining at that stage for so long you must be really pleased. As the kidneys fail they stop removing toxins from your body when there is little drops in function are bodies are amazing and adapt but it gets to the final stage where they are tired and they can't do it anymore so the toxins build up and you are slowly being poisoned.  Everyone is different and some have sypmtoms that are mild and some more severe.  I was ok apart from being a bit tired and breathless until I was about 11% then by the time I got to 6% I couldn't even look at food never mind put it by my mouth. Have you got a live doner worked up for transplant or are you going on the list (even if you have a live doner you still have to go on the list in the uk)  I had a live doner however my GFR dropped so quick from stage 4 they didn't have time to do the work up and so I had to go on dialysis, please can I ask why you are so against dialysis as the chances of just going for transplant are not impossible but are very slim.  You don't have to explain at all I am just interested the anti dialysis.

hi helen not against anything just my head is up my bum been honest i just can't take it in sorry if i have come across wrong x

Hya,

You are reading my reply to Stevenix lol, and no wonder if you head is there. My reply to you is just below and starts off thanks weeled.  I think that may have confused things I am sorry. Have another look and let me know.  When I was stage 4 I couldn't even remember what things were called so I feel your pain.  It gets better though I promise 

Thanks for your reply.I'm not real sure what my "numbers" mean. I've learned to follow my creatinine level which is currently 2.7 mg/dl, my bun level is 32mg/dl and GFR is 24. Other than those I'm still pretty ignorant. I have no symptoms and haven't had any for over 5 years. I haven't tried to find a donor. I will need some direction for that. Most of my other numbers sre within norms.

As I get older,(I'm 67) in the back of my head I keep waiting for something to appear but as of yesy no changes.

I also

suffer from cardio myopithy but that is also under control with drugs and my last echo was normal.

Which brings me back to how do you feel when he kidneys begin to shut down

Thanks for your help and guidence.

Sorry I didn't answer your question about me being so against dialysis. I guess it's seeing these "old" folks carry their little "lunch" bags. They act and look worse than any condition. I don't want to be a puppet on the doctors strings. I would rather make my own decidions...and that includes life or death.

I'm also not a big fan of pain which is aslo part of dialysis. At times i feel death would be better that hooked up to a machine to stay alive....but those are only my thoughts, no telling what I might try if it becomes worse.

Thanks for listening

Steve

Hi,

I completely understand your point of view and of course it is your choice.  You sound like you are referring to haemo dialysis in which case I would agree from what I saw I didn't like the look of it and yes the people did look ill.  I did peritoneal dialysis if this helps you it was fine.  A bit weird to start having a pipe sticking out of my front but everyne wanted to see most bemusing for me.  PD is more gentle and after the initial drain pain (which some people don't have) it doesn't hurt I promise you this as you are so concerned I would not be dishonest with you. As you do it yourself at home (I chose this as I don't like people faffing with me) you are in control of it and it is done over night so you still have your day to do as you please.  I worked and excerised and carried on with life.  It also meant no hospital 3 times a week (I also hate hospital) so this may be an option you would consider as you say if the time came.  I would be happy to go through the process in more detail if it would help you at all.  I respect your decision though, your life your choice, you are very brave.  All the best.

Hi,

Ah you are abroad, America? your creatinine is recorded differently so all I can understand is your GFR, which isnt too bad at the moment.  It is a good thing you don't have symptoms, some do at your point and some don't I didn't until about 11% and then they were not bad not painful just very tired and nausea so nothing nasty.  Keep going as you are.

Helen, it's out by a factor of 100. Depends if expressed as milli, micro,ppm or decilitre or litre (dl being decilitre). So 2.7md/dl would be the 270 that our scale would normally read.

Ah,

I see, thank you very much I have learnt something.  I didn't have a clue about that.  So that is quite high then most peoples (without CKD) being between 60-80.  That is why I love reading things on here, there is always something new to take on board no matter what bit in the journey we are at.  Excellent.

Helen, I love your attitude with this whole thing. In my case i just haven't been schooled in what the numbers mean. I have picked up a few GFR, creatinine, and some others.

On my last labs, I showed a BUN/creatinine of 32 and 2.7 with normal eletrolights. My bicarbonate was 28, and the potassium was at 4.5.

My calcium and phosphorus was 10.1 and 3.4 with a PTH of 34. My urine protein to creatinine ratio was 327mg of protein per.

My vitamin D was 47. I had a CBC with a RBC of 34. My urine protein to creatinine ratio was 327mg of protein per. My vitamin D was 47. I hada CBC with RBC of 8.1 and H&H of 13 and 41with a platelet count of 180,000.

I am listed as having stage 4 kidney disease, possibly related to nephrosclelosis versus other causes.

Mu renal function is very stable and clicically doing well.

This is only a tenth of the information sent to me, and I ask you, what am I supposed to as I left my nephroligist deploma in my other shirt pocket.

I want to stay on top of this thing. Like I said I have been at a severe stage 4 for over 5 years. I have not noticed any unusual symptons.

Is there a place for somebody to read this list of numbers and what they mean? Can you make any sense of this? I have deceided not to go down the dyalisys route and would rather find a donor.

I want you to know that i truely appreciate your candidness and honestly. Thank you for taking the time reading this mish-mash.

Steve

Hi Helen reading a lot of your messagesuitcase you sound very knowledgeable. I went to my gp for bloods but they didn't what BUN was. Can you help.

BUN is blood urea nitrogen basically it measures the waste you have in your wee as kidneys usually remove toxins and ours are not so good at that so its just seeing how many toxins we have.

Hi,

So as to be expected your creatinine is slighty raised, you bicarb is really good in th uk it is supposed to be between 20 and 26 so yours looks ok.  Your potassium looks fab, our guide here is between 3-5 your PTH parathyroid is within normal range for our figures here (10-70).  You look like you are doing really well.  I like your comment about leaving your neph diploma in your other shirt that made me smile as it is exactly like that at times.  I suppose I have picked up things over the years as my hospital get the results on screen in the early days and my nephs have always gone through each one, it also helps that I am really nosey and want to know the in's and out's of a cats backside (very brittish phrase) so I have learnt what the different bloods are what they affect, what the results should be and what happens if they go too high/low.  My team joke they are going to send me to work in A & E (your ER) I suppose I am lucky that at every step of the way I have interogated my team to the verge of tears I am sure at times as I really like to know what is going on and why.  I always research meds before I take them but don't flat refuse I will come up with something else and i think I have earned respect for that.

Here in the UK we have something called patient view, when we have tests our results (not all of them) go on a system where we can log in and see our labs.  There is also lots of info on there about what is normal, and what could be the cause if your results are off, I wonder if you have something similar there.  Having said that you are more than within your rights to say to your neph next time you go could you please go through my numbers and explain what they mean, they shouldn't mind you taking some paper and a oen to make notes (If you don't write it down you will forget as it is not normal language for us) or take someone with you to write things down while you listen.

Have you got a doner in mind? the process can take a while and often things are found in a doner that they didn't even know they had so it may be you find yourself in the position that you need it.  I had a doner in place but it took two years to work up (we don't pay in the same way you do we pay through our wages and have to go on waiting lists) plus my kidney function dropped so fast that even the nephs were shocked as that was the plan with me to swerve dialysis but it wasn't meant to happen like that.  Its not so bad either but we all have our own ideas and fears about it and I respect that fact that you do not fancy it, but just in case it is needed at any point its not nasty. 

I hope you stay as you are anyway that would be the best news for me.

Helen

Try the site :https://labtestsonline.org

I have found it very useful.

Best wishes,

Lyn

Thank you for the kind words. My wife has volluntered to be a donor but we haven'y started the testing process.

I, like you, bug the doctor to explain the numbers but he seemes confident with a "it's normal", or "a little high or a litle low".

I guess the real troublesome thing is not knowing how long I have until I need some radicle procedure.  Everyday life plans make reacting to any change in a negative way, so I guess it's just a waiting game, but then it's waiting how long.

We also have a system here that puts your total labs on the internet but again, you need some sort of degree to make any sense out of it.

Thank you for your time and concern. It's refreshing to know there are others out there with the same state of mind/body.