Hi everyone. I went to dialysis education yesterday. It was the very first time I went inside a building I have past a million times knowing it was where people got dialysis. Going in I felt a wealth of emotions none greater than sadness. It felt suffocating and surreal to be honest. Me and my mom squeezed in a tiny room with the educator and what seemed liked millions of handouts. She gave me information using an old flip chart. The room was so small in fact that my wheelchair had to be outside of the room while I sat in a chair. I felt bad for her actually that she should have to be in such a tiny space giving such important information. What was scary was wondering how all of this is going to become a whole new world for me and not one I want to be a part of. I of course will do what I need to do, but all of the overload of information was a lot to take in.
The Queens first steps inside the Dialysis... - Kidney Dialysis
The Queens first steps inside the Dialysis Center
It is a lot of information, but you can always refer back to it once you start dialysis and have more questions. Your biggest resources and support will come from your staff there like your techs and nurses and nephrologist plus your fellow patients. Also take advantage of your social worker and renal dietitian - they can answer even more questions and keep you on the right track. Yes, dialysis is scary at first, but just remember to take deep breaths to help yourself relax and to know that you're not alone - there are lots of people to help you! And I always used to take things from home to settle in and make my nest out of my chair ( a warm blanket, something to read, my cellphone, etc.). Some people can sleep through it (not me!), but it's good to have things to do since you're there for a few hours. TV gets boring.
Thank you cs65. I'm going to be okay. I know. I have an appointment next week to get vein mapping and then a follow up with the doctor. Step by step I'm getting closer to dialysis but I'm going to be positive even thought right now I'm still in a sad phase. Thanks again.
I start next week, and I'm sure I will feel the same way. I'm trying to be positive but I'm super anxious.
Hang in there and remember lots people do this, we can too! That's what I keep telling myself. 
Thanks you are right we can do it. Lots of people do it. I'm definitely going to be positive too. I haven't slept well over it all but I want to try to talk myself into not worrying. Because worrying isn't helpful to me. Take care of yourself!
Thank you , you too! I will check back in with you next week after I had my first couple of dialysis training seshes.
Hi there. Just wanted to check in and see how you are doing?
Hi Queen. I have to be honest with you. I went through so much anxiety in the years leading up to dialysis that when I started this past December, I actually found that I was relieved. I finally bottomed out. The only place to go is up. Stay positive and stay grateful. Dialysis staff are generally very devoted and this is a lot to be grateful for. You will get a handle on everything in time. No one expects you to know everything right away. Diet is important and there are many additional online resources to help you. There's a great one called "Dialysis Choice." Check it out. Stay strong!!! Blessings.😊
Hi BlueSkyAngel,
The same will probably happen to me concerning worrying. I'm use to controlling things so this feels very unknown in some ways, but also its a process that should be very standardized I guess when I go or do it at home. I just want as easy of a transition as possible. I'm really worried about diet. I'm a big water drinker and anticipate having a problem with water restriction, but I don't know much about it yet. Thanks for the app. I'll check it out. Blessings to you as well!
Queen, water drinking, as I am sure you know, is a good thing for keeping the kidneys flushed. I am doing peritoneal dialysis at home and recently got a nighttime "cycler" machine to do overnight dialysis. Peritoneal allows for more leeway with water-drinking, you may be interested to know.😊
Thanks for letting me know. I’m hopeful that I’ll get to do it at home. I’m just not sure my house will work for it. Because of my spinal cord injury I live on the first foot in a room without a door. It’s a room we turned into my bed room. I can do our stairs because they have a railing on either side and could use a bedroom upstairs but I’ll know more when the nurse comes to my home to check it out.
I was horrified to start dialysis in May of this year. Had always heard it was the lowest end of life. So far, while there have been some bumps on the road, I have learned to take my laptop and work/write while I am there, and it helps hugely to pass my 3.5 hours in the chair. Soon I am facing trying more lengthy but done at-home peritoneal dialysis. From my experience: No I don't like going for so many hours every week, but there are definitely worse things. Find something you enjoy doing with that time and it will go MUCH faster, and you might even turn downtime into productive time.
Hi MP11,
Thanks for the idea of doing something I enjoy. I don't know yet if I'll do my treatment at home or not. I hate worrying about it, but also know that that is normal. If you think of any other tips I'm all ears. I was thinking about getting some beats and listening to music or getting a masterclass subscription.
I think advanced learning would be an outstanding idea. Utilize the time to better yourself beyond just getting the dialysis and suddenly it is not so bad.
Hello -
I am checking back in. I just started week 3 of dialysis. I was fortunate to be able to meet the criteria to do home dialysis, but I'm in center for now, training on the machine that I will eventually bring home. It seriously isn't as bad as I thought it would be, it certainly isn't a party...just look at it as a necessary evil. I'm saying because I am starting to feel better. Feeling more like my old self that I didn't even notice had slowly slipped away. I was feeling crappy for so long I forgot what it felt like to not feel that way. Crappy had become my new normal!!
I have one step left to conquer in my home solo dialysis journey, the actual stick. I can set up machine, prepare my lines. Once someone gets the point through the surface, I can feed my needle into my graft (in my inner upper arm) and tape - all one handed. I can do the needle pull out and direct pressure one handed. tape myself and breakdown the machine. This is all stuff I had NO idea of 3 weeks ago. I would have never imagined I could this, but I CAN do this and I AM doing this.
It all in your mindset. You need to block out the negativity and look at it like it's something you have to do to live. Do not let it define you or rule your life. I still get filled with anxiety when I think about me home alone on this machine, but I remember how far I came and know they will not let me go without being sure I know what I am doing. And I just hope for the best and move on in my mind. I cannot change what is happening I can only change how I react to it.
So you will be doing in home HD solo? I’d love to hear more about this as you move forward.
Jayhawker
Yup, home hemo dialysis solo. They do have some criteria to meet to get into the program. You must also go in center once a month to meet with the Dr, and nutritionist. Your NXStage1 machine is installed in your house and connects to your regular water line , which must be tested. All supplies are shipped to you. It has its own router and iPad that sends your data to the center hub at the end of each of your treatments. You go through a training period while having treatments on a NXStage1 machine in center. These run at slower pump speed and are gentler to your system that the units in center. You hook up for more often, for less time to keep your levels more stable. there's no rebounding afterwards at all. I still work so this is a better option for me. I am a polycystic patient and having immense crowding. PD was not an option for me.
What is polycystic? And crowding?
I be love love love your last paragraph. I need to replay it over and over. I am glad your are feeling better and have conquered learning so much. You got this and I will too. I’m just going to be patient with myself and loving.
I will write back later. I’m at a conference freezing. Trying to rest. My sides are cramping. Back with ya later.
Hi HHQ,
Polycystic kidney disease (PKD) is a hereditary disease. My mother and one brother also had it. It is slow progressing disease and it doesn’t rear its ugly head until you’re older. Basically multiple cysts grow inside your kidneys until they get so large your kidneys can no longer function. They enlarge your kidneys to the point that your other organs start getting squished. I feel like I’m 9 months pregnant but there’s no baby, just guts. People who have PKD usual have cysts on other organs too. I have polycystic liver as well.
With perineal dialysis (PD) you have to be able to get 2 liters of fluid in your abdominal area. I could never do that. I don’t have that kind of room. There may actually be an issue when a kidney becomes available as where we’re going to fit it. I am a very small framed woman.
So, I actually had to go to clinic the first time on Friday. While I am in home hemo training I am 1 on 1 with my nurse, in a private room. In my clinic, there are 18 bays with machines. You are right out there with everyone. My training nurse is on vacation so I had to go Friday and I will have to it again Monday. I honestly don’t think I could do clinic 3 days a week. It is not for me. While everyone was extremely nice. I felt kinda depressed there. A lot of people were in much worse shape than myself. I felt out of place. It is incentive for me to do my own insert on Tuesday when my nurse gets back. It is the only thing I have left to do. I use the numbing cream so i don’t feel it. It is literally a mind block with me that I need to get past. I am absolutely sure now that I can do it after clinic. I did not like the placement of one of the lines, my arm ached bad today. I now get what people who do home hemo say. I actually want to put the needle in now. I know where it needs to go to be comfortable. I never in a million years thought I’d ever say that.
Look how far I have come. I feel so much better already, it is definitely worth what you have to do. I just need to make peace with my “new normal.” I am getting there, you will too. You have to play the hand you’re dealt. I intend to play mine as best as I can. This will not bring me down, it will actually make me stronger.
I applaud your tenacity. I was doing PD at home when it went bad. I’m doing in center due to having an emergency catheter put in.
I’m currently back in the hospital because of fluid in my lung and doing dialysis there. I’m not really interested in home hemo at this time but I love hearing about people who do it.
Good luck with all of this. I know you can make it through. Look at all you’ve accomplished already..
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