the pd nurse came over about 1. I did everything myself I had a little hard time putting the heaprin she wanted me to put in my bag. Cause I took the damn needle off oops screw that one up had to get another needle. She bought a heated bag with her incase my wasn’t warm enough which it wasn’t cause I didn’t recall her telling me to wrap the heating pad around it I just had it laying on heating pad we learn from our mistakes right. So i always drain first even if they’re nothing in me I guess that normal . So that doesn’t hurt because nothing in there. Ok did my fill. Ok she said I did everything well. Give a 1.5 bag for tonight and start warming it up so I did that.So at 7 tonight it was time to drain I figure I laid on my bed when I filled in the afternoon and that felt good I’m going to try to lay for drain. My brother also suggested to me put the heating pad across my abdomen where I always get that drain pain. So I said I will try it. Well I didn’t have the drain sharp pain until the very last drops of the drain and it was more like a five than a 10 so between the heaprin the laying down and the heating pad that the way I would go. I have to do two green one after breakfast one after lunch and yellow after super none at bed . So the journey has began I get use to this then be on the machine next week.
my first day of dialysis at home - Kidney Dialysis
my first day of dialysis at home
That sounds a whole lot better than the awful drain pain you were having. I know when my drain gets to be at the bottom I get some pain so I stand up and move around and then a few minutes later I'm done draining.
You have 4 exchanges to do? I still only have 2, I do one at lunch cause I found I feel god awful first thing in the morning and then one at 6 pm. I'm almost out of greens so I'm moving on to using yellows as I have a lot of them. And I have to use one for a drain bag as I'm out of them. I hope my Baxter delivery actually shows up on time and has what I need. Center doesn't have any cause she didn't get her delivery. Now I understand the supply chain issues.
Sounds like you are moving along quite nicely. It's still going to be some time before I get a machine. Thank goodness I can work from home. Let us know how the machine works. Did you get the Amia?
no I’m doing it three times after breakfast after lunch after supper I keep that in me all night.
I made the mistake this morning not putting the heaprin in like she taught me I think it does make a difference I had a strong pain again.so after lunch I will put heparin in.
I hope there no delay in your shipment . No I could get the Amia nurse said they are shortage on getting machinces she put in for the amia but they are giving me the Claria. I will get it next week from the dialysis center I train Monday and Tuesday on it.
I guess it will take some time for us to feel better doing this . Yesterday I was really exhausted from it and cold I never was cold in training.
I'm still dry at night but oh yes the exhaustion is real. I thought the Mircera shot would help but guess it takes several shots. I've not used the heparin...my nurse said unless I get fibrin there's no point but hey if it helps the drain pain.
Did you see Ron's post to me about the Claria. He found a video that shows how to get connected and he said it looks to be easier than with the Amia. I was shocked at all the tubes connecting to it. Looks like some sort of frankenstein machine...lol. I'm still coming to terms with having to do this every single day until either transplant or die. I know it's not really all that hard but I hate dwelling for the hour and a half so I can't imagine what it's like to do it all night.
If my kt/v numbers are good I may be able to drop from the entire 2L fill to an 1800 fill so that might help with my being uncomfortable dwelling. I still can't believe this is what my conversations revolve around right now. The things we do to stay alive.
yes I seen his Ron post and I have found that same link before and look at it and said it look overwhelming so I just wait until I’m train on it.
Yes my nurse said was trying all she could for me not to have the pain she said we don’t use heparin for pain but she said I’m just a special case and we will see if it works .
This is turning into a major pain in the ass. Thought I could get up at 6 am eat and start the exchange at 7 am. Then during my hour and a half dwell I’d take a shower and sit down to log in to work. After the shower I almost passed out. So then I thought I’d try starting at noon during our lunch time. I’d eat as much as possible until 11 cause 2l is a lot. Then I’d drain and be done at 2 and could eat lunch.
Second exchange started at 530 done by730 but then I have to make something to eat and then it’s 830 and I’m exhausted. Bedtime is 930 unless I fall asleep earlier.
And I’m working from home so if there was my normal 40 min drive to the office I’m not sure how I’d get it all in.
And then there’s taking care of the dogs thrown in. Oh and labs and doctor visits and Baxter orders and deliveries.
Yes I’d be bored in between but I really have to do something about eating. Thanks for letting me rant.
go ahead and vent I feel you. I’m doing dialysis right now cause I have an early appointment so yes it SUCKS I agree it only 6:49 am right now not how I would chose to spend the morning but it our new normal. And it nice to having someone to vent with that understand so go and vent or cuss@@@@@@ or whatever.
How are you doing today? Is the RA meds helping your husband?
I got good news and bad news today. She’s ordering my Claria today and I start cycler training on the 15th.
Bad news is I failed my adequacy test …1.69….01 point! So now I have to do 3 exchanges with a 2 and 1/2 hour dwell. And I have to take a phosphorus binder.
I can’t wait to get on the machine and have my days free. Are you getting the Claria or the Amia? You’ll have to tell me how it goes.
I haven’t did an adequacy test yet. I hope I don’t have to go to four times I know right now I’m not eating well cause I’m not Hungary . How is your appetite with this.Sorry you have to add another one. I am getting the Claria machine that was what was last told to me my nurse said my machine came into the center so hopefully I will get it next week .
My husband having good days and bad days. They have him going to heart and kidney doctor in April cause of his feet and leg swelling. I believe if that went away he would be able to walk better.
I went to transplant center this morning had meeting with nurse ,social worker Doctor ,dietitian ,fiancé . Labs .
Trying to get me reactivated they said there should be no problem I ask the doctor the strange cyst they were concern about could it be a polycystic cyst he said it could be one that bled and is hollow so it may look weird but I will have another cat scan in may to make sure it hasn’t grown if hasn’t properly a polycystic cyst. They will vote on Thursday for my reactivating the doc thinks there should be no problem . If all goes like he think he said I will get a call Friday saying I’m reactivated.
They said I was pretty high on the list but couldn’t tell me where but that to have all my test done I need done so if I get the call I’m ready . I still need a heart cath but they want me doing my dialysis a little while before that.
fingers crossed for you getting reactivated. Swelling in the feet and asks is awful and certainly makes it hard to walk. We will have to have a Claria club.
Hey, just catching up on all this. You guys are well into it now. Glad the pain is better for you, and as I mentioned, it took about a month for mine to pretty much go away. I still feel a bit of a ting occasionally if I'm laying on the wrong side at night or on my back, but I just roll over and it goes away. And happy you'll be back on the active list!
And miracle upon miracles, about a week ago, the alarms stopped going off. I mean just stopped, for no real reason. My PD nurse says my catheter might've shifted into a better location that allowed more "flow" which made Amy happier. I thought it was very odd and that something might be wrong with my machine, but she said she didn't think so after looking at my input/output numbers. So I'm happy to report that progress.
I hate that Horsie is having to do 3 exchanges now, with work, that's tough, I know for a fact, cause they had me doing 4 back during manuals. 8am, 12noon, 4pm and 8pm which stayed in all night. It was hard to do much of anything else other than dialysis and work. I REALLY hope she get's a machine like SOON.
I have a question for you and Horsie. Did either of you get a fistula in your arm the same time you had your pd catheter surgery? I don't remember either of you mentioning it. My surgeon wanted to do both at the same time and I said I just wanted the PD catheter for now. He was ok with it, but his nurse said that they normally do both at the same time.
Hope you guys are getting a little rest this weekend.
No fistula and I specifically told the surgeon I didn’t want one and he said they don’t automatically put one in.
horsie I got my Claria machine today to me it is heavy . My niece carry it in my house for me it is bigger than I thought . But it was a pretty easy set up . You get a cheat sheet too.?I only did today training on it my nurse think I got it pretty well. She is coming tomorrow to help me set it up at home she said my prescription will be less than what normal is cause I pee a lot still. She think I will catch on quick since I know how the manual is. She said I could prime it way in advance so it ready to do when I go to bed if I want to shower and all before hand and you can leave on prime before the next step.
I did have some drain pain on it when she did a drain on it so hopefully laying fully down I won’t cause I just got where no pain in manual .
The weight was a problem and why I wanted the Amia but based on Ron's assessment even with the weight I think I'd rather the Claria. I have training for the cycler scheduled for the 27 and 28. I need to get rid of half of these boxes I had delivered. Some how my order got doubled. So now I have 16 each yellow/green instead of 8. And 3 boxes of drain bags.
I did PD 15 months. One of my friends that had 2 kidneys transplants and did diaylsis told me do gravity bags. I tried the cycle machine at night. Worst thing EVER!! Hurts you cannot sleep! Gravity takes less time you feel in control once you get you routine and they say it is easier on your body. I traveled and took bags with me. So much easier if you can do gravity bags.
yes when I did manual it hurt too but it seem it got better as I went. The doctor thought well maybe I’m more constipated then I thought so I did his medicine and he said I need to have a real blow out yep those were his words well I did and last night was the worse pain ever I had to use the bypass on the machine for the last drain cause toward the end of it I was bought down to my knee in pain . I don’t know how much longer I can deal with this it has hurt before but I got the pain to about a five but last night the 1-10 was like a twenty .
no never even a mention of fistula for arm for me
yeah I’m just doing three manual about six hours apart last one after supper stay in all night.
Hope the machine is easy to learn. How many days of training did you have on machine Ron before you did . The nurse said if you can get manual I will get the machine it look complicated hooking different things in.
The machines look a lot more "technical" than they really are. If you can operate a microwave, you can operate the cycler. The biggest challenge is hefting the 6000ml bags around. AND being very careful to follow procedures, like masking, hand sanitizing while connecting the bags to the machine and the machine to you, but you've got that mastered already with manuals. So all in all, it's a LOT easier than manuals once you get the hang of it. Mine is a tad more complicated with how the cassette fits in and I wish I had more hands to hold it in place, but yours looks a lot easier than mine in that regard. Just be sure, like with manuals, if you make a mistake, do not keep going, throw the bag or cassette that's contaminated away and start again, and I've had a couple of defective bags I had to toss. Don't use stuff that's not right. Other than that, it just becomes routine. Well unless you have a ton of alarms like I did the first few weeks, but those all of a sudden, just went away last week. Nurse says she thinks my catheter repositioned itself inside me so it drains better now. Hopefully it'll stay put! I trained two days on the cycler, then took it home. First day i watched the nurse, second day I did it myself, and that was it. I had watched videos to see how it all worked before hand, so I was pretty familiar with it all before training began. I do four exchanges a night of 2000ml over 10 hours. Every person's "prescription" is different, so you might be doing more or less volume, time or number of exchanges.
Glad you are doing well on the cycular. I am also. But I just have no appetite a lot of days and find myself having to take a nap in the afternoon. I was given a box of protein liquid. I chose grape because it reminds me of the taste of a grape tootsie-roll sucker. I guess I need to start drinking it several times a day to have more energy.
so you still have little appetite on the cycler? How long have you been on the cycler?
Started on cycular this past November.
Some days appetite is fair, good or just want liquids. I just pray I keep urinating as I wait for a kidney. 🙏🙏🙏
I was seeing you live on eastern shore so you aren’t super far from me I’m in Chesapeake
I go to Fresenious Virginia Beach Home Therapy.
oh goodness do you have to pay the bride toll each time you come so I hope they don’t make you come to often that bridge isn’t cheap .
Usually only once a month. I have an eazy pass thingy so round trip is about $20. A nurse comes to the Shore once a month to take blood for lab work & get a mini check up.
Was that Liquacel you use for liquid protein?
I believe so. They would give it me after hemodialysis when levels were dowm.
It takes a little practice but will soon be easier and routine. I love the cycular at night. I just hate that I can't take a long relaxing bath in my big bathtub anymore. But anything is better than hemodialysis!!! Take care!!!
yeah I miss my hot baths in my big tubs that was my get away . What cycler are you on?
It gets easier as you go. Not fun but look at like you have to take time to go to the bathroom. Schedule like clockwork and live life. Pain goes away after a few weeks. Goes quicker as you get your routine set.
I was on it 15 months. Never got an infection but had a few flubs and yes you learn not to repeat mistakes. Once in a while it just happens.
I'm not on dialysis but these posts make scary reading. I don't mind needles or having bloods done. But I found I wasn't comfortable when injecting anti clot after having my daughter nearly 5!years ago couldn't get the right point and was scary doing the needle. So when and if time comes I can go to a unit and have it done there. Hopefully my daughter will be a lot older by then and I be pensioner age as she be 5 in November and I be 50 in January. I'm currently stage 4 with one kidney and atmthe moment my bloods are stable satisfactory.
PD has no needles no blood. Just sugar water in sugar water out. Be clean and getting a great ordered routine is the key to PD. It limits life to stop and go do it at the same times daily but that is the key to making it work for you. Hope you don’t go there but if so PD manually is the easiest on your body and you can continue to travel with the right routine.
Best of luck!
Dialysis on every 4th day
