I saw my nephrologist again in December, and we started talking seriously about dialysis for me. I’ve been waiting for this for a while, my symptoms having been constant for over a year. I always feel nauseus, I wake up 3 to 10 times a night to urinate, I’m always tired, I vomit in my mouth too often (yes, ark…), my body itches to the point where I bruise myself while scratching, my legs are super swollen in the evening, I often have to look at the TV while eating to be distracted enough to be able to eat because most food makes me nauseous… I am so tired of all of this. And if there’s a chance that dialysis will make me feel better, I’m ready to start it yesterday.
I don’t know if you remember, but when I saw my nephrologist in November 2021, he spent the meeting telling me that I couldn’t feel as many symptoms at 13% kidney function, that it should be from 10% or if my magnesium and potassium were higher. It frustrated me, because if I felt good, I would be working and do whatever I want, but this is not my life at the moment, and has not been for a long time.
Despite all of that talk, he heard me because when I saw him again, he was much more open. I spoke to him again about my symptoms, and we broached the subject of dialysis (the method to clean the blood that it is necessary to do for people with end-stage kidney disease, which is my case).
Next steps
With my nephrologist, we agreed to do a more accurate test than the blood test to check my actual kidney function, and to schedule a meeting with a dialysis nurse to begin teaching, since I want to do dialysis at home.
The test to check my actual kidney function
The most accurate test for kidney function is a 24-hour urine test that I had to do in mid-January. Yes, you understood what that entails: from my first urine of the morning, I had to urinate in a paper cup, transfer everything into the large container that the nurse gave me, and put the large container in the fridge. I had to repeat this sequence until the next morning (yes, even at night). Then I went to carry the container to the collection center, in the semi-transparent plastic bag they had given me the day before so that I could keep my head high when depositing it 😛
The meeting with the nurse
The meeting with the dialysis nurse took place on Wednesday this week, by videoconference. My boyfriend attended the meeting with me. I am lucky that he accompanies me and supports me in all stages of my adventure. ♥
We talked a little about hemodialysis, which is usually done 3 times a week in the hospital, at the stroke of 4 hours (so 12 hours of treatment for a week). It is also possible to do hemodialysis at home.
In my case, it is more appropriate to look for peritoneal dialysis, among other things for the ease of installing the system at home and for the greater freedom it offers. I would have the choice between 2 0-30 minutes,4 times a day, or an 8 hours at night, depending on what fits best with my schedule. Both options will always be available to me; I will be able to choose according to the activities scheduled that day.
For both hemodialysis or peritoneal dialysis, a catheter must first be installed at least 5 weeks before the start of dialysis, in order to be able to exchange fluids. This is the next step for me, and I will know more next week during my nephrology follow-up.
I can’t wait to get started, but at the same time when they put the catheter, it will be the first time in my life that I will be under general anesthesia. It doesn’t scare me, but it’s strange to think that people will play in my body without me being able to help them or have my say! I trust them, but I wonder how I will feel when I wake up! If you had general anesthesia, how did it go for you?
I will eventually write a more complete article on the different forms of dialysis for those who are interested! If you have any questions, feel free to ask them in the comments or in private!
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