How Has PKD Been Impacting Me


It's been quite a relief opening up to everyone about my disease and what we're trying to do about it.  And the support from family, friends and colleagues has been really amazing -- so thank you all for that!  One question I have been getting lately has been "How are you feeling/doing? And if I saw you walking down the street, I wouldn't even know you are going through severe kidney failure."  So, I figured today's blog post should be about how this disease is currently impacting me and my family.

The human body is quite resilient.  It generally does a good job at coping with issues and tries to maintain homeostasis (equilibrium) as much as possible.  The various systems work together in such an amazing way, that our own bodies really are an example of what and how we should be acting/working together to create a better world.  For the most part, someone going through kidney failure doesn't see major symptoms till the end stages.  And for me, I've been noticing some symptoms as I'm getting closer and closer to requiring dialysis if I can't get a living donor in time.

The biggest/earliest observable (but not really noticeable symptom) is an imbalance of electrolytes/toxins within your blood -- exactly how I was initially diagnosed.   The effects of this are not as major as fluid retention (which typically happens when your kidneys are on their last leg), but they can be noticeable to the individual. 

For the past year or so, I've been feeling much more tired.  And if I'm doing physical activity, I definitely get tired more easily.  My appetite comes and goes -- lately, I have been able to go almost an entire day without eating.  I've also been getting crazy leg cramps that occur in the middle of the night -- its really annoying as I will have to get up, walk around, massage it out at like 2AM!  Some people have reported that kidney disease also impacts thought process and sharpness.  I kind of feel like that's happening -- although I can work for hours on end, some of my memory recall isn't what it used to be.  Sometimes, I'll have to really work on remembering a word when I'm speaking.  And probably the biggest thing that has been a bit of a challenge to deal with is that my kidneys are quite large inside.  This has been making my abdominal region feel very tight, and sticks out slightly -- you wouldn't notice it unless I lifted my shirt up and stood sideways.  This has also caused my pre-existing heartburn to become increasingly problematic.  Before, I would get it maybe once or twice a month depending on what I ate/drank.  Now, it's become a daily or every other thing and I'm having to take meds regularly for it.

Despite all of these (and a few others) symptoms, I am still quite grateful that I am able to cope and keep pushing forward.  I have been taking measures such as working out daily, eating or not eating specific foods to maintain electrolyte balance and reduce the toxicity that can build up in my blood.  I think one of the best things I have done recently is started fast intermittently.  Each day, I'll eat between the hours of 1pm-7pm.  I'll drink lots of water/etc. throughout the day, but I'll only eat between those hours.  I feel like this has really increased my energy and ability to focus and work.  You should definitely try it (consult your doc), but intermittent fasting does have some really interesting science behind it!

I think we all have our own challenges and issues we face.  And each of us will be required to push through certain things that test our abilities, mental health and overall spirit.  I think this is one of mine, and it has really taught me that by sheer will, we can choose to lead a better quality of life (by fine tuning certain things).  And within this aspect of "choice" I think we separate ourselves from any other beings on this planet -- and it's really the source of our true strength and potential.   Diamonds are made from great pressure, Iron is hardened and molded by intense heat -- I am convinced that I will get through this, and through this experience I will become a better person for everyone around me, build successful companies and leave this world a better place from when I entered it.

Hassan Shaukat