I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: lou on October 28, 2009, 10:42:59 AM
-
hi everyone. Well I found this site a couple of days ago and have been reading it pretty much non stop since!
The nurse has just left my house, having set up the machine next to my bed. I just practised setting it all up and now its all ready to go for when I go to sleep tonight. Feel pretty scared about it all to be honest. Cant quite get my head round the fact im actually on dialysis. Does everyone feel like this on the first night? I keep staring at the machine thinking is this thing really keeping me alive?
I dont know, feel pretty weird tonight about the whole thing. Im on the transplant list and I cant stop obsessing about if/when I might get the call. Bit worried its taking over my life but im sure its just because this week has been so full on. I dont think my friends always understand quite how hard this is and and feel like I dont always want to ring them and talk about it so im so glad I can write this on this website. Its lovely to know there are other people out there who do understand how this all feels.
anyway ramble over, hope everyone is ok,
lots of love
louise
-
You are right about it being unreal. You know you have a serious illness but you don't have scars or bandages people can see so they don't always think you are that sick. I ride a motorcycle to dialysis and almost got ticketted twice for parking in the dialysis zone. If you do not think of this illness as number one in your life right now you tend not to pay as much attention to eating and your meds as much as you should. I think that once you have gotten into a good routine things get easier for you later. Keep reading and come to the chat room, we love to meet new people there.
-
Hi Lou, first of all welcome to the site, you will find out loads of stuff here. First night mmm, scary isn't it. You will be fine, it might seem complicated at first but it will get easier. How many hours are you "plugged in for"? that sounds awful doesn't it. It will seem really weird, you will be frightened to turn around in case you disturb any thing, you wont. I think it was the noise of the machine that did my head in to start with. Keep the booklets close to hand and you can always call some one if you are not sure, 24 hour service. Please ask lots of questions there are some very knowledgeable people here ready to help you on what we call "the journey". Be thinking about you tonight, don't worry. Let us know how you go on. :welcomesign;
-
:waving; Lou and welcome to IHD,
Pretty much everything you are feeling is how i and likely many many others have felt.
Keep your hands clean when hooking and unhooking turn off any fans or heaters close windows ect ect like you were taught. And all should go pretty smoothly.
I have been doing PD for a whooping (2) months but let me tell you it feels like a lifetime. I can set up and be ready in about 10 minutes now. What takes the longest is the machine to prime.
I had to change my schedule a bit for (JuJu) thats my machines name. I go to bed a little earlier then i like so i can get my 9 hours in but all in all it truly for me isnt that big a deal. More of a minor hassle to be honest. I have schedule that works for me fine. I come home take off the old bags ect. I bought a new 35/40 gallon trash can to hold a weeks worth of old bags and tubes, i just put a liner in the trash can and ONLY put dialysis stuff into that can.
So i come home take off all the previous nights bags clean JuJu up a bit and then refresh her with new bags and tubes. hit prime and im done till bedtime. I have never been a good sleeper so i take sleeping pills sometimes after a few nights of bad sleep. But this has nothing to do with dialysis just never have slept well. Karen isnt effected by JuJu unless alarms go off. The only alarms i have ever had has been from laying on the patient line so moving the line or myself takes care of that easy enough.
You may get drain pain, when your fluid is almost all out of your belly you can feel suction on your inner self. For me and from what i have read on here that usually goes away after a week or so. Also if you feel it you can change positions on your bed to hopefully ease any pains.
Yes it is scary at first and all so new and not so exciting.
But give it a month and you will be a pro. it will become a routine just like taking a shower or having your coffee at the same time every day. For me i can hook up late on weekends cause no work :yahoo; ( the small joys huh).
Im sure you will do fine. Good luck and always ask questions if you have them. Many very knowlagable people here
P&K
-
Hi and welcome! This is a great site for info and support!
-
thanks so much for the messages of support. am off to bed soon and dont think it will be the best night of sleep ever but hopefully will be ok....
-
Gday Louise, I think they're pretty normal feelings.
Takes a while for it to really sink in and to sleep with the machine.
Good luck with it and I hope you have no alarms!
Brad
-
it was easy for me to get used to the cycler, because Thank God my days are free. FREEDOM!
:guitar: :welcomesign; :bestwishes;
:cheer: go PD Go PD
-
I hope it all went smoothly last night Louise!
-
Lou,
some machines make a slight humming and clicking noise between fills which can keep you awake. If it's a problem just post and I'll tell you a way of making it completely selent between fills. It's something that the renal staff don't tell you.
-
Welcome to the group, Louise. Congrats on your first night on PD. You'll probably do just fine. Come on back and let us know how it goes.
-
Thank you everyone. Well first night on pd went ok. Needed the loo in the night so had to go in a bucket but other than that it wasnt too bad! Had a really bad pain in my shoulder when I woke up - not sure if thats normal....
I have just come back from an appointment with my renal doc (who I see every 3 months) and feel bit embarrassed as got a bit upset in front of him.
I feel a bit bad saying this here too, as I know some people here have been on dialysis a long time, but I am sooooooo scared of being on dialysis for a long time. It really terrifies me. I feel like I can cope with this for a bit but the thought of still being on dialysis in a year or two is horrible. I cant stop obsessing about getting the phonecall and I know thats really unhealthy. It probably doesn't help that I have been off work this week and spent the whole week in hospital. Bit worried I'm not coping too well!! Everyone tells me I'm coping so well and that they don't know what they would do if they were in y shoes but I feel like I'm going a bit mad. I hate getting upset on the phone to my mum because she worries so much and feels bad as she was turned down for being a donor because of a cyst on her kidneys. I also feel bad always getting upset on my boyfriend because I know this is a lot for him to deal with as well.
anyways I wasn't planning on writing all that but I feel a bit better for getting it all out.
Lots of love Louise (who thinks she may well be going slowly crazy!)
-
The pain in your shoulder can be caused by air that got in you, or by an odd fold in your peritoneum from being empty after being full all night. I get those sometimes (just had one this morning ::)) and they're different from when I used to get air bubbles on CAPD. They go away faster and happen only as soon as I'm empty, so I'm figuring it's just my body reacting to being empty after being stretched out for 10 hours at night. It should go away pretty quickly, or you can take a Tylenol if you need to.
I kinda felt the same way about being on dialysis when I started. I think what kept me from dwelling on that thought that my life was permanently different and I'd be on dialysis for life was the thought that, soon, I'd get a transplant. I have a willing live donor, but for various reasons the process has been lagging and on hold, so I'm just on dialysis for now, waiting until I can look into the transplant. I just recently passed my one-year anniversary of starting dialysis, which surprised me because it didn't seem like that long.
I've been told that I've been good at coping with things. I think it's just because I don't think about things too much. It almost feels like I'm in denial, but I'm not denying that I'm in this situation, I just keep going like everything's normal, and I don't like reminders that I'm in such relatively bad shape. So it's perfectly normal that you're taking some time to adjust. But you will adjust. It'll eventually become routine. For me, hooking up at night is like brushing my teeth - I don't even really think about it, I just look at the clock, realise it's time to set up the cycler, and I do it.
-
Sounds like it went ok Lou :thumbup;
And i agree with Restorer you likely had a bit of air in the tube when you connected last night. I had that happen a couple times. Now once im about to hook up and i have my towelette thingy over my lap i take the hose i connect to and slap it on my lap gently. If a bit of fluid comes out i know it is primed correctly. Hope that made sense. it can be hard to tell if it has fluid in it by just looking at it.
As far as being on dialysis to me, it is what it is plain and simple.
I hope all continues to go smoothly for you.
-
Hi Lou,
It is reallt daunting at first but it does get easier. I've been using cycler (baxter) for a few years now. Hint, if you can sleep facing the machine with the tube loosely under your side in a half circle. It helps stop it from pulling, also if your not a wickedly rough sleeper it'll keep the catheter in position and stop it from crimping during the night, I rarely get alarms. If i change sides i take the tubing and bring it up over my head and put it under my pillow with lots of tube between my exit and the pillow this way it also doesn't get tangled or crimped.
I could set the machine up blindfolded now, not that i do as it would show bad sterile technique :banghead; and i barely notice it at night. yeh there are still times when i am just plain sick of it, want to pick up the machine and hurl it to the other side of the room for no other reason than ' just felt like it '. Eventually you learn to live with it. Doing the cycler you get to spend you day not thinking too much about dialysis.
All i can stress is good sterile technique when setting up and you'll be fine.
Cheers