My Story

I'm not really sure where to begin.
PKD is a strong gene in my family. I don't think I was ever very surprised by having it myself. In fact, I think I always KNEW that it was part of me.
It began when I was a child, having bladder infections throughout my life and having to learn how to deal with them. I think I always realized that it was an early indicator that perhaps I didn't have healthy kidneys already. It wasn't and shouldn't have been a surprise anyway because MANY people in my family have suffered with this disease. It has been passed down through my grandmother's side and she and her brothers all suffered from it. 
My father and two of his brothers also have dealt with it.
NOW, when it feels like crunch time in my life I wish I had KNOWN more and had better tools or understandings so that I could have made different choices and maybe had an easier time NOW but shoulda, coulda, woulda...does it really matter?
I only hope to endure as much of this with as much grace and dignity as I can.
Maybe, different knowledge and choices would have changed a lot and maybe it would not have. Maybe I just need to learn to make peace with the life that I am IN.
I think that people just do the best can with who they are in the now of their now. They do the best with the information they have or whatever has been given to them and that is all I am trying to do too! As things happen to me I read and research and I learn and have learned a variety of new tools for coping with and changing the lifestyle I lead so as to make better, stronger and healthier choices. It is a CONTINUOUS struggle...EVERY day.
The journey began in my twenties. 
YES. I knew that I had a 50/50 chance of inheriting a hereditary disease that seems to be a VERY strong gene in my family and YES, I knowingly and willingly chose to have children. SOME people think that a person should stop the disease right then and there and NOT choose to inflict it upon anyone else but, I don't believe in it as an immediate death sentence and I DO believe in LIFE. I believe that everything happens for a reason. WHATEVER you are brought to or given in life is a journey you must learn to endure or embrace and LEARN lessons from. I don't KNOW what I am supposed to learn here but, I hope that I WILL figure it out.
When I was 21 I was already a single, divorced mom of two babies and I went into Dr. for a regular check up and found that my BP was elevated. Up until that point I had 120/80 perfect BP every time. Knowing the family history, the doctor said we would check the kidneys but not to worry it may be nothing at all. Sure enough, I had PKD. I was not surprised and I don't think my father was either but, my mom kind of lost it. I think she really hoped I'd be of the 50% that would NOT get the disease. So from that point forward to now I am NOT sorry I am here. I am NOT sorry that this is part of my life. It is only one part. Don't get me wrong, I don't LOVE it and I would much rather be healthy and without all the issues that come from BOTH sides of my family and I'm absolutely NOT looking forward to all the pains and challenges I will face forward from now but, this is only one small part of ME and ME is what is relevant here. Knowing and realizing and accepting that my heart and soul is the relevant and important part of me no matter what happens on my journey.
I am learning.
At the time I was a single mom of two babies and I was feeling tired and beat down but I just thought I was tired from being a MOM. LOL After a short adjustment period on BP meds I started to feel MUCH better and realized that it had actually been more serious than just lack of sleep from motherhood. 
There are many factors and issues that plague me and have been lessons for me in this life. I struggle every day with all of them and I strive to do the best I can. Depending on what is going on with me at any given time my best is often something different every day!


When I was 25 and hubby had just turned 25 in May we met. My children were 5 and 6. It was May 31/ June 1 of  1996. My daughter turned 6 in June, my son turned 7 in July and I turned 26 in August. It was just the beginning of a beautiful supportive relationship and family. For two years we dated, eventually moved in together, planned and executed a wonderful wedding that people still say was delightfully fun! ;) and just tried to manage and enjoy family life together. Life was really very good and the answer to many hopes and dreams I had wanted to fill. We were married in April of 1998.
During this time I had gotten a job and been working part-time in a convenience store and then was looking for something more full time because we needed more financially and found an ad at the job bank for the bakery/deli owners I had worked for previous to having my oldest son. MY job! LOL
Seriously THE best job and people I have ever worked for in my entire life. They were friends not just employers and that job felt as much like home and comfort as home!
Sure enough I was hired and began working serving coffee, tea and lunch to customers among other things.
I'm not sure of the year when this started but I worked there up until Dec. of  2000 when I left to get rest before having my youngest son. A year before that I had worked up to and even after we lost the baby that came before our youngest. I had been 4 1/2 months pregnant about a week or so away from kicking! It was a very sad time and we all had to comprehend and deal with it as best we could.
Then right away again we started trying and got pregnant soon enough so that our youngest came 2 weeks early in Feb. of 2001.
During my pregnancy with him I was high risk because of BP and then developed Gestational Diabetes and was referred to my internal medicine specialist (diabetic Dr.). He took good care of me and the baby and afterwards the diabetes disappeared and I went back to normal so he suggested that I could develop Diabetes again for real later on in my forties but with good diet and exercise I could maybe avoid it too.
Unfortunately, I was probably about 34 or 35 when I did develop Diabetes (type 2) and since I already had dealt with him returned to see him and he's been taking care of me ever since.
We managed finally through a lot of trial and error to get me onto a collection of medicines that work together to keep me stable but for the longest time couldn't get BP to lower.
I told him about a few years before when I had a kidney infection and ended up in hospital for about a week and my potassium levels went dangerously low which he found surprising so he suggested a new med for BP and said it would either work REALLY well or not at all but if it did to be careful and call with any issues because it may drop very quickly and sure enough it did and I had the lowest BP I had had in many, many years! Finally! So up until I believe it was sometime in 2007 when we had a disturbingly DRUNKEN tequila birthday party that I'm quite sure caused damage to my kidneys other numbers and levels started going out of sync and the doctor decided to refer me to a kidney specialist also in Orillia.
In the first 10 minutes of conversation with Dr. Lam I understood so much more than I ever had before and decided that yes, I was going to see him and trust him to help me do whatever I could do to take care of me better. THAT has been a long, arduous journey to this point but the things the docs, nurses and dietitians say WORK and do help things get better and into focus if you follow it and do the work. They are there to HELP and they do their best! They need US as patients to also work at making the necessary changes and it has been a challenge for me but I have done my best.
Sometime in 2009 we added gout to the list of ailments and I spent the next few years being in pain and misery around Christmas time every year and once in the summer as well. I learned to stay HYDRATED and eat more fruit (mostly berries) and that has made a very huge difference but also have to take medication to help prevention as well.
I'm not sure if it was later in 2011 or earlier in 2012 when I began my insulin shots but I was upset and didn't want to have to do them at first but now am just used to it and it's not really a big problem.
Also beginning in June/July of 2012 I started Aranesp shots to help with my anemia.
So far now I just try to keep my meds, insulin and aranesp regular and on time and eat right and stay hydrated and keep track of my sugars but function and appetite are dropping so it's a bit of a struggle!
STAY POSITIVE AND FIGHT A GOOD FIGHT!

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2 comments:

  1. You are an inspiration to me in a HUGE way... Whenever I am having a s--t day, I think of you, and I smile... Keep fighting... You will make it thru! If you need anything, you know where I am!

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    1. Thank you Sara! I can't tell you how special and important you are to me but I DO appreciate you so much and I know if I need you I can call. xo

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