starting home dialysis

[WhoaFella]

Hi. I am 49 years old. I am getting the catheter put in my stomach in 2 weeks, so that I can do the home dialysis. Is it called PD? I forget what it's called. But it's the one I do when I'm sleeping. I feel like there is just no support or help to prepare for this. My insurance has some place called Somatus calling me. But they don't seem to know anything. I really just wanna talk to people who are going through this or have gone through it.

They say I need an entire room for all of the stuff they send me. I don't have a room. My house is like 670 sq. feet. I have a basement, but I don't think I can go up and down the stairs that often with these huge boxes.

I'm autistic...also just found that out a year ago. Ugh. So that is the source of a lot of my stress right now...because I'm very worried about my routines and how this is going to work. I had open heart surgery 11/8/2021. I have had trouble sleeping in a bed since that time. So I am super worried about that. I have 2 cats who like to sleep on me. I imagine at least at first I'm going to have to close the door to my room so they won't ruin anything. I think I'm going to get rid of my dinner table and use that wall to stack all of the boxes I'll be getting??? Heck I donno....not sure what a better option would be.

I don't know what kind of financial help I can get, if any. I'm trying to keep running my business, but I wonder if I'll still be able to do that. I'd prefer not to become homeless after I start this.

I live alone with my 2 cats. I don't really get much support from anybody. People always say "call me if you ever need anything", but nobody really means that. I slept like a baby the night before my heart surgery. They had me in the hospital that night to get me on an insulin drip to make sure my blood sugar stayed down. The nurse told me they never seen anybody sleep like that and not balling their eyes out, especially being "younger" like I was. But yeah I'm afraid right now. My fear is just because I don't know if I can do this. I have trouble getting through my days as it is...and knowing I'm autistic finally explains all of that. I'm sure a lot of my health problems have happened because I've tried and failed to navigate this world on my own as an autistic person.

OK so after writing all of that.....I'm not gonna let this stuff worry me. I have thoroughly loved living on my own for like 13 years now. But right here right now, this feels kinda lonely. I do wish I had some help with this...at least in the beginning. Every time I try to reach out for wisdom from....anybody....it is simply unavailable.

Thanks for reading. It's nice to know there are at least people out there who are maybe going through the same emotions or have gone through them in the past.

[Beachgirl32]

who fella this new journey is scarcely when you are in the unknown. Yes it called pd for short. I was able to do it fir a year and half I had to switched to hemo after an infection.your center will train you about a week .They say no pet while you are doing pd especially while hooking up. My mom used to let her cats in after she hook up but I can tell you my mom had many infections you don’t want peritonitis that is an infection you can get if you aren’t clean with pd dialysis . You have to clean your site every day. No cats around when you do this . Not trying to scarce you but nobody told me about you can get drain pain . You go through three steps drain then you fill then you dwell first they will start you out in manual and then the nachince. I. First did the mschince seven hours then nine hours . You have to go to clinic at least twice a month one for labs and one for clinic doctor visit. Yes you need storage you will have about 30 boxes to store the Baxter people will come once a month you have to call them ahead of time they will carry everything in stack them . You will have your days free . They give you a number to call if you have any problems no matter the time of night . If you have any questions please feel free to ask I just started hemodialysis which I didn’t want to but I’m having an easier time with it so far but I don’t drive so I have to arrange rides three times a week but there are ride sharing but I’m blessed to have family and friends help me and my church family .

[MagicNoon in reply to Beachgirl32]

When I was told that I had to start dialysis, the feeling was overwhelming panic. I wanted to run so far and so fast. My Nephrologist referred me to Davita. I chose PD as I have a busy life and am caretaker for my husband. I use a computer every night. You do need storage for the boxes. I used all the videos on Youtube to help me with planning. The information on Youtube was reassuring to me as I could focus on the process rather than the panic. It's one day at a time, sometimes one moment at a time. I was assigned a Dietician, Social Worker and a Nurse Educator by Davita, but it was about 4 months after my ESRD diagnosis. That is way too late. I needed that information soonest not later. Life is a path and we all walk it as best we can. I focus on the folks that I call my Kidney Heros. Ramon who delivers my Baxter supplies, the electrician that came to my house in the pouring rain to install the electric outlet I need for my computer. There are resources but you have to search for them. It was hard for me to listen and hear the information in my panic. RSN has an Iheart radio interviewer. She is wonderful and has lived with kidney disease for years. Be strong. You are your own best advocate and know what is best for you. Be your own best friend and focus on the immediate issues and not the overwhelming panic. You will get through this. My catheter is my friend, my computer is my friend and I even try to accept the fill/drain pain that I have every night as my treatment to help me feel better. You will begin to slowly feel better, improved energy and less itching. It will happen.

[Darlenia]

I'm so sorry you're feeling unsupported by your health care team. My husband went on PD for about a year before he was given a transplant. He did well on PD. Thankfully, he didn't get any infections during that time. There are indeed a lot of supplies - but, with a little creativity, most people find ways to work with that. Some slide materials under a bed or convert dressers, others use a storage unit or garage if the climate permits, and so on. If you use your dinner table area, you can put a lovely tablecloth or blanket over the boxes to make the area nice, etc. The delivery man placed the boxes exactly where we wanted them to be. We didn't have to worry at all about lifting and carrying them at all. I'm sure you will get similar service. With regard to money matters, Medicare now pays for dialysis treatment, so that's a very good thing. We found it very worthwhile to visit to our dialysis center. Our center showed us the various dialysis machines, discussed diet matters, and recommended a specific surgeon to place the catheter. This info was very important - because the catheter was placed well, my hubby never experienced drain pain and was able to easily clean the area, etc. If possible, try to arrange a similar visit - and let the staff know about your concerns. It makes a big difference when you meet the people who will be working with you, who will listen to you, and who can answer your questions, including the insurance/Medicare situation. Doing that benefitted us a lot, I think it will benefit you too.