New member from Canada!!

[sandra16]

I stumbled across this site by typing the question - when do I start dialysis?

I'm not very good at remembering dates, but about 13 years ago, I started feeling funny.  Trouble sleeping, no interest in food, big wieght loss, couldn't walk a block without gasping for air and feeling like my legs were made of wood...and a bunch of other stuff.  Finally one day I gave in and went to the doctor because my ankles were swollen twice their size and I felt awful.  The doctor listened to my ailments and took my blood presssure...not once but three times, and had his nurse come in and check it as well.  Long story short...he told me to go directly to the hospital.  I spent 10 days in the hospital while they stabilized my blood pressure...most of this time was a fog for me 'cause I was so sick.

I had 33% kidney function when I was sent home and with medications, I felt wonderful.  My blood pressure was under control and doctors were pleased with my recovery.  The only question was and still is, what caused this?  Did the high blood pressure cause the kidney failure or did the kidney failure cause the high blood pressure?

So for ten years, I visited my kidney doctor once a year and nothing changed.  Three years ago I had a drop in kidney function...down to 25%...I still felt fine.  He asked if I would like to be part of a CKD focus group and learn more about my health problems.  I agreed...I figured that the drop was due to my age, after all, being over 50 meant that other parts of my body were going to slow down...no big deal.

My first meeting, I met my team.  A social worker, a nutritionist, physical therapist, a nurse and of course my doctor and his intern.  It was a wonderful morning, I was learning lots of things and thinking this is a great thing and was happy that I agreed to attend, even if it meant seeing these people every three months.  When the nurse came in to take my blood pressure, she said they have a new way to figure kidney function and that my number was not 25% anymore but 13%, then she dropped the dialysis word.  I immediately broke into tears...this was the last thing on my mind.  Silly I guess but it had never entered my mind that I would ever have to consider this.

I've been faithfully going to my appointments every three months,and taking all the meds I should.  I've gone to the info meetings to learn about different options and to learn about diet etc.  I've been through the gamit of feelings...wishing I could go back three years and keep living, happy as if I had a brain!!  I wonder at times if ignorance is bliss and other times thankful that I am prepared mentally.

My team is wonderful and always have time for me.  I had a mental breakdown at Christmas and they were there to support me.  They are always available when I have a question or complaint.  They have been preparing me for pd, which is my choice right now.  The only wish I have is that someone would tell me when I will start dialysis.  I know that everyone is different and it depends on how I feel....blah blah blah....I hear that every visit.  I want to know...do I decide its time, does my team tell me?  Mentally, I'm ready.  I'm tired of being tired.

I see my team on tuesday.  My last visit, I had another drop, down to 11% function.  I go to work everyday.  My doctor says that is what is keeping me going but it is harder to do...I have a wonderful boss that lets me nap 45 minutes every day, otherwise I'm not sure I could keep working!! 

Anyway, I have never really written or said so much about myself.  I have browsed a few messages and the one thing that I was shocked to read was that you stop peeing.  OMG really?  I will start enjoying getting up at 2 am from now on!!

Look forward to being part of this site...thanks!!

Sandy

[billmoria]

Hi and     Sandra.

Yes, I pee very tiny remarks But SOMETIMES you feel like you MUST and your get up --- and nothing happens or so little happens it is not worth it.   
Lot of people on here with lots of good info. You have found a good place.

[looneytunes]

Hi Sandra and welcome to IHD.  This is THE premier site on the web to interact with other KD patients as well as caregivers and even some medical professionals.  Read, search, rant, ask questions, whatever.  There will always be someone on here that will understand, listen, or answer.  From my understanding, it seems like your medical team will make the decision based on your labs and how you feel as to when you will start dialysis. 

I look forward to seeing your posts.   

[willowtreewren]

Hi, Sandra.

When do you start? It was my husband's doctor who gave the word. BUT, I wish he ad actually started sooner. He immediately started feeling better when he started dialysis. And then we trained on NxStage and after that he said he felt 10 years younger.

If you are feeling really crappy and tired all the time, bring it up with your doctor on Tuesday, and good luck.

 

Aleta

[Sluff]

Welcome to IHD Sandy,
I don't often have the chance to welcome new members anymore because of my job,so today is your lucky day, or is it mine? you decide. As far as starting dialysis, from what I have learned is 10% or lower is the magic number if there are any. Most people try to put it off as long as they can. It's good that you are mentally prepared because I think that's half the battle. I guess the time will come soon enough, so try to live your life to the fullest, once you start dialysis you will be on a strict schedule. I hope once you start that you do the best you can to not let it control your life, you seem to have that figured out already and that is a good attitude to have. hope all is well and thanks for joining our community.

Sluff/ Admin

[monrein]

  to IHD Sandra.  I'm from Toronto and have been lucky also to have a great team of medical people at the TGH.  I started dialysis at around 16% the second time around since I felt so awful but it's always a difficult decision.  You sound ready to me and will most likely feel better physically once you get adjusted to the whole thing.
You've found the best place for info and support by finding this site.

[galvo]

G'day, Sandra and  .

[Jean]

     to IHD Sandra. This is a great place to come to for info and for support. Glad you found us.

[Desert Dancer]

Hi, Sandra!  to IHD.

Like Sluff, I've also heard that under 10% GFR is the magic number. I have FJHN and started dialysis when I got down to 8% function. I had to go in through the emergency room because I felt like crap, e.g: couldn't breathe, bad chest pains, etc. I was quite educated and mentally prepared (or so I thought), but I still ended up putting it off as long as I could. I wish I had started sooner than I did, because I immediately started feeling better.

Oh, and about the peeing? Not necessarily. I don't know about PD - there are many here who do and can tell you for sure - but I know when I was on in-center hemo and short daily hemo I stopped peeing altogether. I was devastated because I had hoped to keep at least a LITLE residual kidney function. But then I came home and started doing nocturnal hemo. Within 6 treatments I was peeing like a racehorse again, 2:00 AM visits and all. 

[sandra16]

 Thanks for the welcomes from all!!
Well you folks have certainly armed me with new information and questions for my doctor!

I need to get serious(er) about maintaining whatever kidney function I have left.  I am thankful that this is my only health problem (other than "old timers")!!

 

Take care and talk to you soon!!

Sandy

[RichardMEL]

Welcome Sandra!

While 10% GFR is a threshold value of sorts, it also depends on how you are feeling, how your labs are etc - it's not a magic cut off switch and probably a decision best made between you and your treatment team - and it sounds like you have a good working relationship with them which always helps.

Re peeing - again, this varies. I was on hemo for  4.5 years and never fully stopped. It reduced maybe 90% but it never stopped. Some people do, some people don't. I am under the impression(perhaps wrong) that those on PD are less at risk of this, but I am not certain on that part.

Good luck with your meeting on Tuesday (it's tuesday here, so it's soon for you!). Don't be scared, be positive and proactive and ask all the questions YOU need to be SURE of where you stand and what the near term plans are.

Again, welcome to IHD!

 

RichardMEL, Moderator

[Cordelia]

Hi Sandy, It's really nice to meet you. I'm also from Canada. I hope you enjoy the forum!