Guest Post – Alicia
When I was diagnosed with PKD almost 3 years ago at age 22, I took it as a death sentence. But with three ultrasounds, a chest x-ray, a CT scan, MRI, several blood tests and other jabs against hepatitis A & B, 5 visits to a wonderful specialist and many more to to an equally wonderful GP under my belt, the verdict is clear and the sentence set. I got life.
After the initial shock and I’ll admit, disgust at the discovery of the disease PKD, in a strange twist, being a person with PKD has taught me a lot.
Firstly, I learnt a lot about myself. At first it was difficult to come to terms with because I didn’t look sick, I still don’t. Nor can I see the state of my kidneys without the help of xrays and dye or sound at a higher frequency that 20khz. And reading about it made me feel more isolated – the more I read about my illness, the less I felt I knew myself. However upon reflection, being diagnosed with a disease actually made so much sense.
For years I had put up with the side effects of pain, hypertension and vitamin D associated with PKD without realising that it was not normal. I put the pain in my calves and feet down to always being on my feet while working as a waitress, which wasn’t fixed by quitting to find a “sitting down” job. I excused excessive fatigue to living an active life and the demands of my studies.The reason for experiencing chest tightness and acute chest pain was for laughing just a bit too hard. Sensitivity in abdomen was for eating just a bit too much and pain that shot up from the base of my spine was obviously inherited from my dad, who has a bad back.
However, being diagnosed with PKD opened my eyes to the fact that all these seemingly separate problems where all part of a bigger problem that had been overlooked, and that needed attention and medication in order to be correctly managed for me to be able to function better.
Which brings me to my next point – the importance of medication. Ever since I started taking my daily dose of micardis and vitamin D I have noticed the physical and mental changes in myself. I feel more alive! Lower blood pressure now means less fatigue, and less leg and chest pain. I also wasn’t aware that low vitamin D means that your body can’t absorb calcium which could ultimately lead to osteoporosis in the long term. In the short term, it’s also helps maintain normal function of nerves, hormones, muscles and heartbeat. And now that I can absorb more calcium, my body too works better. Which also means less mental and physical fatigue.
Lastly, that being a person with PKD made me realise that it’s ok to admit to my limitations. Being vulnerable and opening up about my disease to family and friends has not changed the way that they look at me but rather prompted kindness and in some generosity to the point of offering me their kidneys. It has also allowed others to feel that they too can share with me whatever problems they may be experiencing, health or otherwise. Which taught me that working with my limitations, due to my disease, in the struggle to live a normal life is a very universal and human experience but can also be something quite incredible.
To sum up, I got life because besides having enormous cyst ravaged kidneys, I am affirmed by my specialist that I am the picture of good health. For this I am grateful. I realise that for some, living as a person with PKD can be unpredictable, and all-encompassing as the condition of the kidneys deteriorates. I know that I have this to look forward to in future which is not exactly something one looks forward to, but now that I am aware of myself, and my disease, it is far from a death sentence and more an alternate way to live. I hope to work towards a better future for myself and those who I share this condition with.