I went to dialysis this morning for my treatment. I go to dialysis 3 times a week: on tuesdays, thursdays, and saturdays. Each treatment session is 4 hours long. What dialysis does is it removes the excess fluid and wastes from the body/blood that the kidney cannot do due to the fact that the kidneys have failed. I’ve been on dialysis since late 2004.
I might be inclined to say that my biggest complaint about dialysis is the fact that I have to go at all, but that seems to be a fact of life right now. Next to that, my biggest complaint about dialysis is the fact that it absolutely takes EVERYTHING out of me by the time it’s over. I’m so incredibly exhausted after dialysis that all I want to do after it’s all over is quickly eat something and take a nap.
I’m sure the fact that I suffer from chronic anemia doesn’t help the situation, but it’s a real pain feeling so tired after dialysis. As a 25 year old female, I’d really like to be more active in many different aspects of life, such as work, school, social activities, etc. Many of these things have to and have taken a back burner due to the fact that I simply don’t have the energy to do many of these things. I know that it’s important to take care of your health above all other things, but it’s pretty frustrating nonetheless.
I wonder if there are other people out there on dialysis, and if they feel as fatigued as I do. How do you cope? How do you maintain a somewhat “normal” life?
View Comments (4)
Hi, nice blog. My wife started dialisys a couple days ago and she looks very tired after its done, usually 3-4 hours.
Hi Anonymous,>>Thanks for reading my blog! It must be overwhelming for your wife to be on dialysis for the first time. If she was ill for a long time, she'll be very tired for the first little while...then she'll feel a bit better. If possible where you are, I do strongly suggest you consider doing home dialysis. If you read some more of my entries you'll see how much better my life is with it! Feel free to contact me with any questions you have>>--Flo
Aloha FLo,
I just was told by nephrologist (i am diagnosed with sle too) that i need to put in the fistula...iʻm going to schedule it for december. I am a full time public school teacher, a part time community college teacher and iʻm trying to finish my doctorate. Iʻm married and i try to be strong, particularly in front of my husband...he gets so worried about me sometimes, I just feel bad that he feels bad. I like being independent and going on dialysis is really scary for me. It hasnt sunk in yet, (not really... I knew it was coming, but it still sucks that its here), and I dont know what that means for my career. I still want to teach. iʻm good at it. but how can i dialyze and teach? is it the end of my career? and where/to whom to i start to talk to?
thanks. and keep on keeping on...thatʻs what i do.
aloha
Pauahi
Hi Pauahi,
Thank you so much for reading and for your comment. I definitely understand where you are coming from as well as your fears. I'm guessing you live in hawaai. Have you spoken to your nephrologist about home dialysis options?
I've been on both sides: in-centre dialysis and home dialysis. There is really no comparing the two. With in-centre, I was exhausted most of the time. I couldn't do all of the things I wanted to do. I couldn't go to school, I couldn't work, etc.
I resisted home dialysis at first. I had one thing on my mind and one thing only: transplant. But when I found out that transplant wouldn't be in my immediate future, I knew I had to do something because I couldn't live this way anymore. After being approached by home dialysis nurses time and time again, I finally decided to start training. It was literally a decision that gave me my life back.
Here I am today after having started home dialysis in 2008. I went to school full time and worked part time-something I couldn't dream of doing while on in-centre dialysis. I had energy. I wasn't tired ALL the time. I had my life back.
Let's not be unrealistic though. In spite of being on home dialysis, I still have SLE. Fatigue is still something associated with SLE, and whether you are on home dialysis or not, it is still something you will need to deal with. I had to learn a lot of things after being diagnosed. I had to learn that I have to say "No" sometimes. I can't do everything all the time. I have to ask for help if I need it. As much as I often feel like I'm just like everyone else...I'm really not. Its okay to ask for extensions on assignments, papers, and tests. Its okay to need to sleep in once in a while. Its okay to wake up one day and not feel like doing everything or anything. Once I learned these things, I became more successful and more productive than ever. Someone like yourself who has so many things going on including teaching two different levels of education, the marking that goes along with being a teacher, you yourself trying to complete your doctorate, etc., I think its important to know that whether or not you are able to successfully take on all of these projects or not, you're going to have to take it slow. You may not be able to take on a WHOLE BUNCH of things like you once were. This was one of the hardest lessons for me. Let us not forget- stress is a major trigger for lupus flares.
So my suggestion is this: if you don't see tranplant in your near future, or you are not interested in a transplant at all, I suggest you speak to your nephrologist about your options where home dialysis is concerned. Trust me: it gave me my life back. I also had to learn that I have to have a good work/life balance. Don't let work, school, SLE and/or dialysis define your life. Spend quality time with your family and friends. It'll make a huge difference.
I wish you all the best and I hope you will keep in touch and let me know how you are doing.
Xo
Miz Flow
Mizflow (at) gmail (dot) com