I get asked a lot of random and sometimes silly questions about my illness. If you have any additional questions, please feel free to ask!
What caused your kidneys to fail?
I have no idea. The doctors ran 13 different tests on me and they still have no idea what caused them to fail.
How did you know you had kidney failure?
I did not know. I went for a routine checkup, ran some bloods and found out I have kidney failure. You can read the full story here and here.
How did you lose so much weight?
The honest answer is that I lost my appetite after I got sick. I lost about 6kg in that first month. Between then and now, it has been a roller coaster. I have lost even more weight (13kg in total) due to throwing up and dialysis.
What do you eat?
In the beginning, my diet was very strict. I ate food with very little spices and sauces. As I got used to dialysis and realised how everything worked, I started introducing some of my old foods back. However I still have quite a few diet restrictions and I tend to be quite strict about it.
How often do you do dialysis?
3 times a week. Each session is 4 hours.
What do you do at dialysis?
I catch up on Modern Family and I sleep!
Does dialysis hurt?
I can only answer for myself. It does not hurt at all. I have a port coming out of my neck and the dialysis pipes are connected to that. Other patients that have been on dialysis for years have fistulas in their arm and they are connected to their machines with big needles. This is something I am hoping to avoid because I hate needles
Are both your kidneys damaged?
Yes. Both my kidneys are damaged and combined, they run at about 8% currently. A normal person runs at about 90-100%
Do you pee?
Some days I do and some days I don’t. Trust me, not peeing for an entire day is quite weird.
You look so much better today! Is your treatment helping?
No Patricia. I just had the energy to straighten my hair today.
Why’s your skin so dry?
My body is filled with toxins that my kidneys cannot process and I cannot drink a lot of water to keep my skin hydrated.
You don’t really look sick. Is kidney disease really that bad?
Well, I kind of need to take an organ out of someone else and put it into my body. I would say that is kind of serious.
Why don’t you just do a transplant?
Kidneys are not readily available. They have a very strict work up procedure and they need to ensure that the donor is 100% healthy. I am on the transplant list but the waiting list in South Africa for my blood type (O+) is 5-8 years. If you would like to become an organ donor, please visit the Organ Donor Foundation and sign up online here.
Who’s your donor?
My entire family was tested to be donors as they were all willing to donate. My dad and eldest brother were the only two with the same blood type as me (O+). My father is currently doing his full medical work up to see if he is healthy enough to donate to me.
How do I become a donor?
It’s simple really! Register on the Organ Donor Foundation website here. Alternatively you can give them a call on their toll free number- 0800 22 66 11. They will then send you your organ donor card. Remember to inform your family and loved ones about your decision so that they can understand why you’re doing this but also so that they know to respect your wishes in the future.
What’s the difference between a cadaver kidney and a donor kidney?
Physically, there is no difference between the two kidneys. Some people believe that a cadaver kidney will last longer. Others believe one from a donor will. The main difference between the two is that a cadaver kidney comes from someone that has passed away and has chosen to donate their organs and a donor kidney comes from someone alive that has chosen to donate to you. Both come with their own emotional rolls and doubts.
How many surgeries have you had?
Four. The first was to put the pipe in my stomach (read more about that surgery here), second was to put a pipe in my leg for emergency dialysis, third was to fix the pipe in my stomach and the final one was to put the pipe in my neck.
Why do you still work?
*in my head*
Because I like $$$. A lot.
*out of my mouth*
Two reasons. I am not going to put my career goals on hold. I will continue working until my doctors say I cannot. Secondly, I cannot sit at home all day and do nothing. I’d get bored. And fat.
What’s that thing in your neck??
This one I get a lot lately because I tend to not hide my port anymore. The thing in my neck is the port that they use to do my dialysis. No it does hurt. It just hangs there and does its own thing.
How do you stay so positive?
I cannot simply answer this question. When someone asks me this, I smile and avoid the question. I will write a blog post about this because there is no simple answer
2 thoughts on “Frequently asked questions”
I am on dyalisis I have a fistula in my arm.it would be good to have friends the same.i do struggle som2 days with tiredness.and my bones ache.i am sue
Hi Sue! Please feel free to email me (have a look at the contact me page to send me mail) so that we can stay in touch! I’d love to chat and remain friends 🙂