‘Life is not measured by the number of breaths you take, but by the number of moments that take your breath away.’
Maya Angelou
I have considered telling my story for a long time, but I believe it is worth sharing experiences related to illness and dialysis. Is it a difficult subject? Not anymore! I don’t even remember when I finally came to terms with it all.
Dialysis is not a sentence. It has helped me get back to an active life. I still travel the world, but now I choose an airplane as a means of transport. I don't waste time on long journeys, because I have to undergo hemodialysis during my stay. My beloved Diaverum has branches all over the world and they will always help prepare my medical records in the clinic. My life is better than before dialysis because I finally have strength!
I had my first dialysis on 31 January, 2017, but the problems started much earlier. Back in 1999 the occupational medicine doctor noted the presence of protein in the urine:
‘Nothing's happening yet, but please take care of it.’
‘Sure.’
So what did I do? Absolutely nothing. Swamped with work, I don't think about my health. I felt good sometimes but usually I felt bad. Still though, I had to work so I didn’t make a big deal about it.
A few years later, while in Germany, my back began hurting a lot so I went to see a doctor. They told me to do a urine test immediately. The results were abnormal, which was concerning, so I was referred to a nephrologist. Back in Poland a nephrologist looked at my test results, listened to what I had to say and explained for an hour that the increased kidney parameters are probably due to increased body weight, and I have gained weight, because the thyroid results are very bad, so this is the reason.
‘Just take care of your thyroid and you will be fine.’
So I take care of my thyroid. In the meantime, I am still struggling with high blood pressure, unfortunately with varying results. I feel that some people see me as a hypochondriac who continuously makes up diseases.
It's September 2016. Summer is over and I have had a constant cold since June. I buy more flu drugs and try to heal myself. I am constantly tired, even exhausted, everything hurts. I have no more strength for anything except work. I eat and sleep.
Months go by and I feel worse and worse. Since November, I don't really work (I only do something remotely). My legs hurt from my calves down and I feel very cold. I can put on several layers of clothes and still have the chills. I get diarrhoea that doesn’t stop for weeks. I lose over 30 kg. I don't feel like eating anything. Even my favorite chocolate. My hands are shaking. I have a hard time breathing and I'm starting to choke. I can’t take two steps without being out of breath. Everything annoys me, everything itches. I take sleeping pills and sedatives because everyone keeps telling me it's neurosis.
By Christmas I have a very bad backache, but the doctor says that it is my spine and that I probably strained it during pre-Christmas cleaning. I get a prescription for nine injections because none of the antibiotics help. I take the injections. I get through it somehow even though I'm exhausted. I'm starting to think I may be dying. I don’t talk about it yet.
Evening, 31 January, 2017. I‘m feeling very bad so I take a sleeping pill and go to bed. I know that I am screaming in my sleep and thrashing around on the bed. I get up and go to the bathroom. I want to brush my teeth, but I can't put the toothbrush in my mouth because my jaw is locked. I go to tell my family what’s going on but I can’t.
In the middle of the night, an ambulance takes me to the hospital.
They take my blood. While I am waiting for the test results, the doctor comes over with a pile of papers and says that my kidneys are damaged – they’re only working at 3%. I need dialysis. They take me to another hospital. When I get there they tell me they have not seen such bad results in years. The fact that I'm still alive is a miracle!
For the first 48 hours I am still stunned. I say and do silly things. My body is so poisoned by toxins that my brain is not working properly. At first, I have dialysis every day and I start to feel better over time. I can use the phone again, ask for a laptop and start looking for information on dialysis. I also have training in what to eat and how to read the test results. I get back on my feet. After a month, I am running around the ward on my own.
If you think dialysis is a sentence – it’s not! For me, dialysis saved me. Only now do I truly understand what it means to live! On discharge, I was asked how I felt. I said I haven't felt this good in 10 years. I enjoy life and appreciate every day. I try not to concentrate only on dialysis, I always have too little time and the day is too short. I love sports, so I cycle a lot and even exercise in the gym. I also find time to pursue my hobbies, which is podcasting and I even make money doing it. It is very motivating.
Dialysis changes your life, because there are many things to remember, but when they become your second nature, it's easier. Dialysis therapy pulled me out of my deep depression. Today I am optimistic about the world. I would like to hug every patient who is just starting with dialysis and has only one thought in their mind: "This is the end of life, nothing good awaits me". Fortunately, that’s not the case!
I have wonderful people around me during this struggle. One of these people is Sylwia – Clinic Manager in my Diaverum clinic. She offers help and can explain everything calmly, listens, and reacts wherever she can. And she has knowledge that he willingly shares. I wish everyone could be cared for like this. I am really lucky to have found such pearls.
Magdalena from Gdynia