dialysis and feeling better

Thks Helen. That news is encouraging. Can I ask what your gfr was when you started dialysis?

Hi,

Yes of course they won't even consider it unless you are 15% or below then they will push it some more.  I knew when my GFR was going to drop as it did it every year in a September for some reason so there was a clear pattern.  In September 2014 it was 12% and I kept asking aren't you going to do something.  When I was 9% then they said it was an emergency! so I was booked in for the op to have my tenckoff catheter fitted for my PD.  I sat in the hospital all day then they tried to send me home without doing it, I asked them when they were going to do it as it wasn't like I had a sore finger and they said they didn't know.  So I said I was going nowhere until they did it and sat on the ward and wouldn't move.  In the end because I refused to go they did it, sometimes you have to stand your ground!.  Then after the op you have to heal for a couple of weeks then you have a weeks training.  This is only if you do PD haemo is different.  Can I ask if you have though which type you may want?

Hi Helen

I haven't decided yet.  I like to swim in the ocean so maybe a catheter isn't a good idea.  My last gfr was 17 then 18.  It has been 20 for nearly 2 years.  I know it will fall eventually.  I'll get another test in March. My main side effects are sleepless nights and a lack of energy.  My partner is undergoing compatibilty tests but it is an aweful decision for me to make. Terrified something will go wrong with the live donor.

It is good having someone to chat with

Hi John,

They advise against swimming in the sea with a fistula too, thats what you have haemo through.  I guess what you have to weigh up is what life style you are aiming to have on dialysis.  I chose PD after lots of research and looking at youtube (much to my husbands dispair) and I chose it due to that fact there are not as many restrictions, if your bloods and fluids are ok there are none.  On haemo you are allowed ml's of fluid each day so if you live somewhere hot you may struggle with that.  Also there are a lot of food restrictions and also people have said that you can feel very ill on the days inbetween sessions until you get used to it.  You can have issues with very low BP down to the fluids they pull off you.  Then you have the visits to the hospital three times each week and possible infections.  Then you have PD as long as your blood work is ok (potassium and Phosphate) and you don't retain fluid then there are no restrictions, which is excellent as before I started PD I was on a low potassium diet and phosphate binders (nasty) now Vitamin D tablets and just one BP pill.  Of course there are the issues I have to be honest, I struggled at the beginning as I am only narrow so they wanted to put more fluid in that I could take and once they listened to me that was ok, then there is the drain pain some people get it some people don't.  I did but it settled down after a few months, then there is getting used to the sound of the machine at night that takes a while too but again is ok now.  Then there is the fibrin strands that you can get but that is easily solved with heparin in the fluid.  The only thing you have to do is watch that you don't eat all sweet stuff as the fluid is mainly glucose so you could have the potential to put on weight if you are not careful, then there is the potentional for peritonitis however my PD nurses watch me like hawkes and they are on hand to take action if need be.  I have been doing it for just oveer a year and touch wood I have had no problems as long as you set up exactly as told it is fine.  My husband wanted to be tested as he is the same blood group as me so would be able to do it but I have said only in an emergency as we have young children and they wont understand where we have gone if we both disappear so my best friend has had the tests and we are looking good to go.  I know exactly what you mean when you say you are scared for your partner I too am scared that if anything happens to my friend it will be my fault as if I wasnt ill then she wouldn't want to help me it weighs on my mind a lot.  I don't know where you love but in the UK we have to go on the doner list too I had one call before Christmas and I had to stop myself thinking about the persons family as I know what it is like to say goodbye to someone who is important to me.  I was fully prepared to be sent away with no kidney so that was ok and I suppose now I have had a trial run I know what to expect, the law has also been changed here in Wales were people have to opt out of being a donor if they die rather than opt in.  They also hope to be testing a synthetic kidney on humans in America as early as 2017 so things are looking promising.  You are right it is nice to chat to people who actually no how it feels, you are in the tough part at the moment you think its never going to end its the limbo bit were you can't have dialysis yet so you have to put up with being oh so tired.  Do keep me updated on how you get on and if you have any questions about dialysis I will try and answer obviously I can only tell you about what I have read and seen in the unit for haemo but I can give advice about PD

Helen, I wonder what sort of gfr or creatinine readings people get after starting dialysis.  Do you need to do the PD every night?  All night?  The machinery doesn't look as big as I thought it would.

Hello,

My creatinine is about 300 now you GFR doesn't really change mine has gone up slightly but the purpose of dialysis isn't to improve kidney function it is to remove waste.  Your GFR will only increase significantly after transplant.  Yes I do PD every night all night (sometimes I have a night off with no issues).  The machine its self isn't to big its all the stuff that goes with it.  The hospital bought me a garden shed!.