Posted , 3 users are following.
i am wondering if anyone can tell me how they felt after they started PD at home, i'm in my forth day, and feeling very tired, if i go out i am out of breath after a short walk, my kidney function was 8.8 when i began PD.
thanks
0 likes, 5 replies
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helen54849 hilary60046
Posted
Hi,
I did PD between Dec 2014 and Sep 2016, you have only been doing it for four days, did your nurses not go through it with you at all? PD removes good things as well as the bad as it cannot tell the difference so if you haven't already had low iron and HB levels you have been lucky. I would get those levels checked, when I started PD I had an iron infusion (tablets didn't work for me) and a shot of EPO this takes two weeks to work. You may also have issues with your parathyroid, this is common and can be treated with vit D. Do you have a last fill of fluid to keep in you during the day? if so what is the amount of this, it may be that it is too much and it is squashing your lungs, this can be solved be talking to your nurses and trialing a reduced amount. I am only slight and so I couldn't cope with the fluid in the day so we got rid of it all together and my fills for PD were only 800ml each time. It is about getting used to it and then working with your team to adjust things to suit your needs as we are all indervidual. Regarding the tiredness, were you under the impression that you would feel the benefit of PD quite soon? It took a good 3-4 weeks for me to feel any different and I started when I was 6% GFR. You will start to feel a bit better but don't expect to feel 100% as it doesn't do that. If you try and do gentle excersise until you feel better this will help with the fluid draining I don't know why I did metafit which is high intensity training 3 times a week and found that helped with the fluid draining and also energy levels even if I didn't feel like going at times. Anything is good even short walks. How are you getting on with the PD in general? Have you had any drain pain? I had that for about 3 months then one day it just went away. Its an odd thing to get used to isn't it having a pipe sticking out of your front and being plugged into a machine. Also a bit of a pain setting up and taking down but then you get used to it and it becomes as normal as brushing your teeth. You will feel better jst give it a bit of time. I hope this helps a bit.
hilary60046 helen54849
Posted
i need to check my levels im not sure, but i dont think i have any fluid kept in in the day...the drain did cause alot of pain on hte very first night...the fluid levles were then adjusted and it is better,,,i have a bit of pain but nothing like the first night...my muscles are sore, i think the amount of fluid intake is maybe like you a bit much as i am slight too....i will discuss this with the team at my appointment on Monday...
i know i wont feel better for a while, i just am surprised i actually feel worse than before this week...i think i need to eat more protien...
im going to try that anyway...
thank you for your reply it really is nice to talk to someone who has gone through it i dont know anyone else who has, training was good as i got to meet 3 other peolpe all in te same boat...
do you work full time? i hope you dont mind me asking
helen54849 hilary60046
Posted
Hi,
I had two bags of fluid for the night exchanges I started off on yellow two of them then progressed to one yellow and one green and then ended up on two green. So to start with along with those two bags I had a little purple bag called extroneal. You will know how many bags you have to attatch each night. If you keep getting the pain you can adjust the amount of fluid the machine drains out I think mine was set to 85% as the norm but I had a time when my pipe on the inside kind of curled up on itself and got stuck in my ribs so I changed it to 75% for a couple of days and as there was more fluid left in it unstuck itself. Is your machine set to tidal there are two tidal and copd, tidal is the better one for the drain pain. Have a look at the settings in your machine jst don't click to change, you can't do anything to it that can't be changed back and you will get to know what is what then. I am nosy so had a very good look lol. I had read too much protien was bad so I asked my neph and he said eat as much as you like as it makes no difference so I listened to him as they have looked after me for years.
I am not shocked that you feel worse as you have been through quite a bit so far, so you have had the op to put the catheter in that is no walk in the park, then the recovery from it, then you have had to get to grips with the training and that whole process, then your poor body has to get used to a foriegn object in it and fluid that has not been there now going in and out. You are amazing never forget that!
Of course I don't mind you asking about work, yes I do work full time, I am off at the moment due to the transplant but I worked full time all the time I was on dialysis, I am lucky my employer is amazing I think the are thankful I still went to work every day even though I was half dead (that is no joke). They new that if the machine alarmed I would go over my 8 hours and so might be late they were fine with it, I can come and go as I please for hospital appointments etc I got into a routine clean machne down in the am once it had finished, make everyone breakfast take them to scholl go to work, come home make tea and butties etc set up machine then go to metafit come home have a shower then go to sleep. You will find your own routine once you get into the swing of thiings. How much is your fill at the moment? Are you in the uk, the reason i ask is we have patient view where you can see your own results, creatinine, GFR, HB, iron, etc its really useful I have mine own little medical degree this helps as I know what they drs and nurses are on about like I said I am nosey. Also I hope you don't mind, have you claimed PIP? also if you have your machine in your bedroom you can contact your local council you can get an extra discount off your council tax they come and visit you and see your machine then you get a bot off, you should also get some money towards your electric its about £11 a month but the machine does not cost a lot to run, its like leaving a small light on. You can also contact your water and electric companies to be put on a priority list say if either go off you are first to have it put back on (your neighbors will love you in the event of a power cut). I think that is it but if I think of anything else I will let you know.
You are quite right it is nice to speak to people who have been through it or going through it, my team are quite good the recognise they don't know what it is like and openly say this. Are you on the transplant list now then?
hilary60046 helen54849
Posted
Thanks for the reply...
really good to hear you're at work...I'm off and have been for a number of weeks, my job is quite full on and I couldn't cope with that and everything else...I will be going back soon though..
drain pain last night was ok..not too bad ..I thought I'd put weight on over past few days but now it's gone back to normal..
i feel relieved..
im still breathless when I go up and downstairs which is weird...I'm going out for another walk later,
i know I can claim back electric, I didn't know about the other things, so thank you.
i am in London, the hospital are amazing I have a home visit this afternoon,
i am on the transplant list...
to be honest I had thought a family member was going to be a live donor...but not so sure any more, so I'm assuming not so I don't get my hopes up any more...
helen54849 hilary60046
Posted
Hi,
Regarding the weight thing I had to weigh my self and do bp every day, that way they can tell if there is anything a miss. Also you will put on a bit of weight as the fluid is sugar based so you constantly have that in your body and some is absorbed. You may also after time get what they call PD belly it goes once you finishe dialysis.
It is a scary thing for proplr to be a doner, I had a lot of people from work go and get tested which really humbled me to think that they were prepareed to even go and get tested. My daughter wanted to do it but she was 16 at the time but duly informed me that she had done her research and she was allowed if it was an emergency. I informed her it was not an emergency to help her a bit I told her that she may be able to help in the future. My husband was a blood match but our little boy was 4 at the time so I didn't think it was fair on him having two parents out of the picture, he thought that if you went to hospital because of my nan, he still thinks she is there but sadly she isn't. So my friend stepped up as my cousin didn't want to and I get that. I was on the list I am blood group o which is the most popular so on the two years I was on the list (you have to be on the list even if you have a doner) I had one call that didn't work out as long as you prepare for that you will be fine. So my bestie stepped up who hates needles and had alsorts done to her I won't bore you with the transplant details yet lets get you sorted at this bit of your journey first lol. Do you drive? why not get some writing put in your back window of your car stating that you need a doner or get your boses to email round your work. Its worth an ask. I was in hospital with a lady who was on her second transplant and the person she has hers from was a living person who just walked into the hospital and said he wanted to give a kidney - amazing. I think its about raising awareness and letting possible doners know that they wont ever just take a kidney they test you to death and do a projection of what your kidney function will be at 85 if it is not good or they find any issues they won't do it. I hope you start to feel better soon, I am sure you will x