Nope, it’s not a new drug …
PKD are three letters that completely overwhelmed me and would change my life four years ago. Something that I never thought would happen to me, just others, had happened. Four years ago, I went to the doctor for a routine examination, because I felt very tired and low.
I was sent directly for an ultrasound and PKD was diagnosed, to my great surprise and horror.
Life takes paths that we neither want nor have planned and it’s just a matter of keeping on the journey. You simply have to learn to like the situation.
If you are like most, you have no idea that PKD stands for Polycystic Kidney Disease, a most often innate and hereditary life-threatening disease that causes the kidneys to produce countless cysts inside the kidneys. It can be fast or slow depending on the type of PKD you have. I have a mutation on the PKD 1 gene, so for me the process has gone quite fast.
Eventually, the circulation closes in the kidneys and causes them to stop functioning completely. There is no cure and the only solution right now is kidney transplant.
This trip has been and is a pure roller coaster, where you learn how to get along with the turns that life takes. Being forced to accept that the body is sick, even though one wants so much and the soul is full of life. Nowadays I sleep in the afternoons to cope with the whole day and sometimes I nap after the children go to school, because my nights are usually very upset by trips to the bathroom or restless legs, caused by iron deficiency. My life has been put on hold and it is mentally tough to wait for a solution that you don’t know when it will come. It may be tomorrow or in 5 years, depending on whether a donor is found and is a match. I have had difficulty accepting the disease because it does not show on the outside and does not hurt, but the spirit of life disappears gradually and I’m getting more and more powerless. However, not many from the outside see that I am ill.
It sneaks up on you. Not until now, when my overall kidney function is 8% have I been forced to completely accept and realize that I really need help, like a donated kidney, to continue to live. It takes so much to even communicate this wish for myself. Who am I to take place and want to live on? Am I really entitled to if my body has given up?
That’s all I want, right now, is to get a second chance to live and see my three children grow up and to stay here on beautiful earth for a while longer. It’s not so easy to accept how serious the situation is.
It’s strange how many thoughts and concerns we have in life, but when it comes down to it, it’s only life we wish for. In this way, this is a learning journey. I have learned to appreciate the little things in life. As my mentor Lilian usually says: stop whining and learn from it instead! Does not work every day though ;)
I wish and ask for healing to my kidneys every day. Gold, light, streams that help to cleanse blood clots that suck dirty blood through meditation, acupuncture, herbs, SCIO frequency, oxygen therapy and CBD oil. I could make a long list of everything I’ve read and tried, but unfortunately there has been no change in the progress of the disease, although these things have helped me with more energy, balance and power and I am grateful for that.
Over the last four years my normal life has been with tests, samples and doctor visits every three months. Now I’m no longer able to work and within a year I will need a kidney, otherwise I will start dialysis, which weakens the body in the long run and would limit my life a lot. Nothing I wish for, especially since I like to travel and be very active. The best thing would be to get a kidney to transplant directly, then no dialysis is needed, so that’s my goal.
The optimal donor is a living donor in good health, obviously and not too old, as kidney capacity gradually decreases with age, so my parents, who are almost 80 are too old to donate for example. Fortunately, kidneys have a huge overcapacity, so you can do well with just one. There are even studies showing that those who donate and live with one kidney actually live longer. Often, one kidney becomes even more effective then, so it works for two.
For the most part, I’m happy, I like life, eat healthy, do yoga, work well and look fresh, so people rarely notice how serious the situation is. But on Wednesday after my usual blood sampling, the doctor called me and said I had to go to the emergency room because my potassium values were dangerously high (the kidneys regulate the Sodium – Potassium balance) and I was set up with an ECG and the whole run of tests because they were worried that the heart would stop. Then I was scared, really ugly shit-on-me-scared. Afraid that the kidneys will not be enough until I have a solution. I’m afraid that ‘this is it’, death taps on my shoulder sometimes. Afraid to get tied to a dialysis machine that keeps me alive while the body gets weaker and weaker.
That I might have done something wrong, though I really know that’s not the case. I have done everything in my power to try to reverse this and those of you who know me, know how I turned inside out trying to find a solution, spending both energy and money. I’m not ready yet with life, I know!
The mental and emotional bit is definitely the most challenging in this disease, as you are basically only waiting for a deterioration and getting weaker and weaker. As such a not so very educational nurse, casually said to me: Now it’s just going to be done. Yes, thank you, now it feels so much better! Lucky he didn’t hear what I was really thinking then …
Yes, the kidneys affect many different things, for example cognitive and hormones. I’ve been lucky, because I take care of myself with food and exercise, so I have basically no physical symptoms besides fatigue and a lot of cysts in the kidneys, but it also makes it harder for the brain and the heart to accept where I am at.
I am grateful in the midst of the chaos that I have not received ALS, cancer or any other serious condition and that I’m a pretty positive person, for the most part.
I’m a doer and am used to being able to fix things and helping people, but this time I have not succeeded, despite brave attempts and it’s very hard to accept. But I must accept that now, this time, I’m in need of help. I want to be independent, strong and manage myself, but this time being strong means daring to be weak and vulnerable and to accept help.
To accept the situation and quit fighting against the it is what I’ve done now and that’s why I want to share my story so that more people know what PKD is and maybe you just feel in your heart that you could test yourself anonymously to see if you are a match for a possible kidney donation. That you want to give the gift of life to a friend or unknown person, to little me or someone else who needs it.
Please, take a moment, feel free to decide where you stand on the issue of donation! There are many who need an organ and one person alone can save up to eight lives. We need to take a stand for or against and I have decided that my illness should not be in vain. I will help in every way I can to raise awareness about this. Among other things, through this blog where you will be able to follow me weekly. I will aim to be so honest and naked as I can on my trip.
Here are some facts about organ donation:
On January 1, 2018 there was a need for 817 organs and of them 685 kidneys in Sweden. On average, 1 person dies on the waiting list each week. Unfortunately, Sweden has few donors by European standards and, especially in Skåne, the numbers are alarmingly low. In 2016, only 185 people donated an organ and every year since then the number has dropped, so even fewer donated.
Read more at:
Where do you turn to if you feel in your heart that you want to help save lives? You can report that you want to be a donor via the social welfare fund’s donation register:
Or, get a donation card from the pharmacy to have your wallet.
To become a living donor, start by doing a thorough health check and special blood tests to see if you are a match. It takes about 3-5 months with all samples to be taken to check a match for live donation. It can be done anonymously.
Read more about living donation here: http://levandedonation.se
As I said, you can test completely anonymously to see if you are a match for a living donation.
If so, contact the kidney reception at the hospital nearest you, for example, Lund tel. 046-173621 (Mon-Thurs 9:30 to 11:30).
Warmest thanks from the bottom of my heart since you took the time to read and reflect on this!