Voices of PKD: David Lafleche, Ottawa ON
My name is David Lafleche and I am very pleased to have this opportunity to share my story and journey with PKD. It has been a long journey with a diagnosis going back to around my college days that resulted in some very early and profound life-changing decisions.
Despite those early emotional impacts I’m happy to say, all things considered, my life’s journey has turned out pretty well to this point and I have so very much for which to be thankful. However there certainly were some bumps and surprises along the way and of course there remain major challenges awaiting down the road as my kidney function continues to decline.
Looking back to the beginning of my health issues, it was in my early 20’s when I first got hit with some very difficult news – a diagnosis of a life threatening chronic illness! But it wasn’t the news of PKD – not yet - it was the troubling news of being diagnosed with Multiple Sclerosis (M.S.).
There I was just getting ready to head out into life after college with many goals and ambitions and then before I even got started I was told that I had M.S. and unfortunately nobody could tell me how this would likely turn out other than what might possibly happen in the years ahead. I was left to wonder if I would soon be disabled, perhaps dependent on a wheelchair, or requiring the assistance of others for many of life’s everyday needs.
I couldn’t know of course how it would progress but that possibility would always linger over my head creating significant anxiety and affecting decisions such as marriage, family, and even certain career and business ambitions. Despite knowing I had M.S., and that things could take a turn for the worse at any time, I did try very hard to keep this in perspective and not let it overly limit my enjoyment of life – although that was easier said than done in those days!
As Hemingway wrote, “The Sun Also Rises” and so I tried to welcome each new day with renewed wind in my sails and remain busy making plans for how I now saw life unfolding with of course the awareness that a chronic, potentially life altering disease could rear its ugly head at any point.
Things then seemed fairly stable for a while but it would be only a short period of time after my diagnosis of M.S. that I would then receive another diagnosis – one confirming that I also had polycystic kidney disease (PKD). Another serious illness! “This can’t be” I thought - I felt like I had the proverbial carpet pulled out from under me once again.
Leading up to the diagnoses of these chronic illnesses, I had charted a course for my life of which I was quite sure and confident. I graduated college, began working in computer systems in the private and later public sectors, had started investing in real estate and other venues which were intended as precursors to fuel future business plans. I thought I saw in those early days how my life was going to unfold and I was excited and ambitious to begin the journey.
As time passed however, the knowledge of these diseases and what could happen, would change many things. Knowing I had M.S. I would awaken each morning wondering if I had any new indications of the disease – any less mobility, any new stiffness, pains, or other problems and this would weigh heavily on both mind and spirit. In hindsight, however, it would prove a worry that was needlessly allowed to fester for far too long.
The arrival of a PKD diagnosis of course only exacerbated the existing medical concerns I had for how the future would now unfold. As I learned more about the nature of the disease and especially that it had a 50% chance of being passed on to my children it only served to reinforce the perception of how my life would be changed and the limitations I believed it imposed.
PKD would then become the deciding factor at a still young age that I would not be having a family, as I could never be sure if it and M.S. would limit my ability as a father and more importantly if PKD would be passed on to my children. The latter was a risk I could not accept and so in the years ahead I allowed the weight of these health issues to push aside the business and family goals I once envisioned, and merely acquiesced myself to a life of daily routine with the earlier fire of ambition mostly extinguished.
What I would come to realize however in the years ahead is that imagination and worry left unchecked can sometimes be our own worst enemy, as we are sometimes better off to simply follow our hearts and dreams and have faith in how things will turn out.
As it would come to pass, M.S. and PKD did not manifest themselves in any significant crippling way or stop me from living a healthy and productive life, but it was certainly a difficult lesson to learn in allowing the unknown to affect my life’s decisions so greatly. One must always see the glass half full, put unwarranted caution to the wind, and forge ahead bravely with our hopes and dreams.
Although my life had taken a very sharp turn at a young age, I did go on to complete my career recently, retiring from 35 years in computer systems work. I did as well along the way, at age 40, meet the love of my life (Irene) and we married and have been able to share many wonderful years together.
During our time together we have built a terrific life and have been able to enjoy and share many activities, family events, and hobbies of interest. We actually met on a golfing date and had taken out memberships together at various courses playing regularly for years. We also enjoyed playing squash in our earlier days – Irene having been ranked as an accomplished squash player certainly kept me running hard to try to keep up with her! Irene and I have also been very active in social and charitable events to raise money for various causes, including a number of cycling events (sometimes on separate bikes, sometimes tandem!).
Given my personal experiences with PKD and M.S. as well as having witnessed the trials and tribulations of disease in my broader family, it became very dear and important for me to look for ways to give back to the health community for all the wonderful care and attention I had received over the years. About 11 years ago I was given the opportunity to participate on the clinical trial of Jinarc (the only drug proposed to slow the progress of PKD cyst development) and I jumped at the chance to volunteer. For the next 7 years I would be making regular trips to Montreal to be part of the study. Although I discovered early in the trial that I was one of the participants on the placebo for the first three years, I was thrilled to learn of the drug’s efficacy in slowing cyst growth and was eventually moved, along with other participants, to the active drug which I have been taking ever since – a drug that costs $32,000/yr but luckily is mostly covered by insurance.
It has been truly wonderful to see firsthand the terrific work and research being conducted to help mitigate the effects of diseases like PKD and hopefully one day find a cure. Hopefully this will be a thing of the past for the next generation and what an honor it has been to be a small part of the journey of discovery.
For now time marches on and Irene and I recently as well celebrated my 60th birthday in Florida this past February (vacationing there for the month as we have done for the past 10 years), and to this day my PKD surprisingly has not been a major issue in preventing us from having a good and productive life.
The lesson learned being that a diagnoses of PKD should be carefully considered before allowing it to greatly change and affect the direction of your life. A life with PKD can indeed still be a full, rich, and enjoyable ride for many, many years!
However although I am now 60, and considered a very young 60 in both appearance and physical ability, I should not give the impression that I have gotten off scot-free in the disease. My kidneys are now each the size of footballs (although luckily perhaps American footballs as we like to joke) and my overall kidney function is below 30%, making dialysis and transplantation imminent in the next few years.
Unfortunately many of my immediate family were also affected by various health issues and so I find myself currently without any identifiable living donor for a kidney transplant when that day arrives. My father had me when he was 42 and his life experiences aged him rapidly. As a result, he passed quite some years ago. My mother came from a large family and many of her siblings were also afflicted with PKD. In my mother’s case she had become so ill from the disease that she became too diminished in her later years to qualify for a transplant and perished over 25 years ago from complications. I also have a ½ brother from my father’s first marriage but he has fallen into a state of dementia (Alzheimers), and so of course is not a consideration with respect to donation.
Irene as well has some health issues that preclude her from being a viable donor candidate. There are a few cousins and other relatives scattered about but our family became rather distanced for various reasons many years ago. All of which to say there are no likely candidates to ask for a kidney, even if some of them could be located all these years later. It is my hope therefore that reaching out to the kind and generous population at large may find my donor angel.
On the plus side I do envision many continued years of happy and productive life ahead with my wife, friends, and remaining family, whether I should have to rely on dialysis or am lucky enough to receive the wonderful gift of life from a donor.
As mentioned, I have recently completed 35 years in my first career and have actually now begun a second career as an artist – a painter of oil on canvas landscapes, cityscapes, portraits, and more.
Above is my home studio, showing some of my oil on canvas paintings.
I am a member of several art associations, have done a number of art shows, have maintained a wall of my work at a gallery in a nearby city, and have received award for my realist depictions of various domestic and international locales. Some of my work can be seen on my website at Paintingsbylafleche.com, although I am somewhat guilty of not keeping the site totally current. However I always have a number of new art projects in mind and am excited to see where it all may lead!
As well, I maintain an active athletic lifestyle with a regular training regime (as well as possible, of course, with large PKD kidneys) consisting of running, rowing, cycling, weights, and I still to this day keep a heavy boxing punching bag in our home gym for a little extra workout now and then.
I am a very young person for 60 in many regards, be it creating new paintings, working on interesting projects around the house, (for example recently building our garden shed, laying front interlock, patios, hardwood, and other fun house stuff requiring physical ability and endurance), or just going for nice walks or cycling with Irene.
Although PKD will imminently bring me to a point in the relatively near future to require a kidney transplant, I am now able to maintain a positive outlook for the years ahead and we pray that my dream of receiving a kidney in the coming years will be realized by a generous donor angel to enable us to continue leading full and happy lives as we travel down the road of life!
Best Wishes to All,
Email: [email protected]
Ph: 613 692-2414