As many of you have heard already, a dear friend of the PKU community . a PKU adult and advocate Kelli floyd passed away on the weekend.  Kelli and I first met over 9 years ago on the internet forum http://www.pkuboard.info I met her as Kelli Wrenn.  I never had the pleasure of meeting Kelli in person but we have had many conversations on-line. Kelli was a inspiration. She had such a positive outlook and advocated for adults to try to mange their diets. To try harder and to take one day at a time. To try to drink their formula and she did her best to be supportive. To share her experiences so others could learn from them. I am sad to say we lost touch over the years and I did not make the effort to keep our relationship strong. Life got in the way and our paths took different twists and turns. I sit here now wishing I kept in better contact. knew how she was doing and what she was going through. Spent more time getting to know her. I did see her comments and posts around fb, I did read them when I saw them and commented when I could.

Her death came as a shock to me. I was un prepared and it effected me more than I would have guess. It effected us all in some way. I learnt that she had gone into cardiac arrest  after struggling for a while with health problems and seizures. She was lifeless for 20 mins . They where able to revive her, than she started again to have multiple violent seizures. Her husband never left her side.  The test after the seizures did not provide hope and we leant Kelli was brain dead and was on life support.  These where not kelli’s wishes. Her husband and family disconnected the life support. The doctors said she would live for 30 mins. She fought and held on for 18 hours before God took her home.

I have kept kelli in my thoughts and in my prayers. Along with her husband and family. Kelli touched the lives of so many people and since her death there has been an out pouring of support, prayers and messages from all those kelli touched.

There has also been much self reflection in the community. Specially for the adults. Kelli’s story and death have hit deeply for all those who still struggle with PKU or even for those who do not have access to treatments.  Many of us know of Kelli’s struggles to acess food and formula and that she had gone some time with out regular formula intake. We know she had high levels but was working to stay on track.

There is much fear in the community this week regarding the link between pku and seizures  , as well as if PKU contributed to kelli’s death. thus I felt it was necessary to clear a few things up. Kelli would not want us to be acting this way.

We do not know if PKU was the cause or contributed to the cause of kelli’s death. We do know that seizures are a side effect in some who suffer from uncontrolled, unstable or unmanaged pku and high phe levels. Not everyone who has PKU will suffer these side effects .  I am not saying that it was not the cause. It is a proven fact that people with PKU who have high phe levels are at a higher risk to have seizures.  Though we cannot be sure  that was what happened with Kelli. I Instead of causing fear and alarm and spreading panic , kelli would want us to focus on learning from this experience.

Even if Kelli’s death was or was not pku related, and even if her seizures where cause or not caused by PKU take a look at your own health. If you are concerned about your levels, if you suffer from high levels, if you are not on diet , if you wish to go back on diet, then please seek medical advice and treatment. It is not easy to just “go back on diet” i know that just as much as of all you. But together we can support each other to do our best and try to make better choices and decisions to better our chances.  Take from this and learn from this.  Let it motivate us to take care of our health and fight for access to treatments so something like this does not happen again to anyone.

I also must be clear once again, not all illnesses, health concernes and life problems are caused by PKU. There are always more variables, more causes and more risks. You can have PKU and other health issues non related, even seizures.

However there is always the risk,,  and  if you know you suffer already from side effects, if the damage has already been done, please let this push you to educate yourself, have a conversation with your doctor and your PKU clinic. Try new formulas and gain acess to low protein foods.

We should not speculating at a time like this on what is and what is not related. What the cause was, what the reasoning was and or causing panic. It is good to be aware and to educate yourself, share your story so others can learn. but please refrain from making medical suggestions and sharing opinions with out more fact.  It can cause alot of fear in newly diagnosed families, children , family and friends in the community as well as in our selves . I do not mean to discourage anyone from sharing their thoughts and feelings. We all are here for support , to learn from one another and to educate each other.  We have all been taught or told different things over the years. The research is always growing and developing and changing . The pku community has come so far over the years and I am so happy and grateful for that . We still have a long way to go so do keep that in mind.

I feel very passionately that being on diet for life, and taking advantage of low protein foods and treatments when we have access is the best possible way to keep our body and our brain healthy.

It frustrates me when I hear people off diet talk about how they do not feel the effects, or when someone does not understand PKU and how serious it is and can be. It is not just about diet or what we eat. It is so very much more than that . At the same time, we are very lucky that PKU is manageable and can be treated with food and formula. If we actually use them!

I know for myself I truly feel my best when my levels are low. under 6 and I feel amazing. Higher than 8 and I become so sensitive and out of touch with my body.  I can tell the differance now that I am healthy, how much it effected me to be some what off diet. Though I always drank my formula. I cheated and lied about what I ate. I suffered and I paid the price and still have it weigh on me. I know how hard it is, how dark it looks from the bottom. How hopeless and difficult it is to pull yourself up. I promise you for those who are currently off diet and dont think it is effecting you, you will notice when you get your levels lower and it will amaze you!!!

it truly is like that say, like a fog has been lifted, or a light switch flipped. It becomes so much clearer and it becomes easier . The motivation stemming from just simply feeling good. I wish I could show you all what it is like.  You wont believe it till you feel it.

I encourage you all, who struggle or are off diet, reach out, seek help, seek support, educate yourself and take the first steps to improving your quality of life and lessing your risk for side effects such as seizures . Do it for your family, your children, your siblings, your parents, your spouse,  your friends, your co workers, your team, the public. Do it for Kelli but first and foremost, do it for your self.  It will change you. You can trust me when I say it is worth it. You are worth it. Do not give up. All you need to do is ask for help!

Even if you are not struggling, if you are managing, and think you are doing ok, try a little more, push a little harder, challenge yourself , reach higher and expect more from your self. We can all benefit from focusing more on our health. And not just PKU health, anyone;s health . Any ones journey. For weightless, for fitness, for diabetes, for your brain  , for your heart , for your lungs, for your body,  for cancer, for diseases, for sickness and for health. Push yourself and keep on working on you!

That is what i am going to do . Thank you Kelli for showing me its time to pick myself up and try again. I will miss you. I will think of you and I will do my best to keep your hopes dreams for us all to continue to grow. I will pray for peace and strength for your family and your loves ones. RIP .

I am often asked about my career as a Licensed Practical Nurse. I am asked frequently if having PKU and my experiences in health care pointed me towards being a nurse.  Or of I had always dreamed about being a nurse. Honestly becoming a nurse, was not my first choice. I had many ideas prior to deciding . While I was in school I had not thought much about post secondary education. I was a horrible student with a C- average. I failed many subjects and skipped school many many times. I just wanted to be done. My only focus was getting out. My only dreams where of being a mother and a wife. Even though my hole life , until I was 18, I was told I would never be able to have a baby. However that’s a story for another time. I held out hope.

As I started grade 10 in high school, I really started to think more about post secondary, in my heart I always always knew that I would do something. I just didn’t think I was smart enough or good enough. I just knew I wanted to have a post secondary education. My mind swirled with options, One thing that I kept coming back to was, how much  I  enjoyed  was , working at the pre-school. I loved babies. I loved being around young babies and toddlers. I finished school by doing a CAP program and I used work hours as extra credit. I volunteered at 3 pre- school classes a week. Even working at the day care on our high school property where students and teachers who had young children could attend. I began to consider for a while, being an ECE ( early childhood educator) for a long time.

After high school when Cole and I where still new in our relationship, I held various jobs, a beauty specialist at super store, the head cashier at winners, a photographer and sales associate at sears portrait studio. That was one of my most favorite jobs. After that I worked at sears, I was a receptionist at Slegg Lumber, and 2 chiropractic offices. Even with my various jobs, I always thought about post secondary. I had to put it on hold for many years, with injuries, illness, financial set backs , life sort of got away and it was not the right time. I kept applying and looking around though. I had applied at Camosun College twice for ECE and had been accepted but then could not get financing. After I got over my disappointment I began looking at other options , funding and colleges. I than considered a career as a counselor. I spent alot of time in the counselor’s office in school. They really helped me out alot and I wanted to help people. That was the one thing I knew when considering a career of my own. I wanted to work with people, I wanted to make a difference and help people.

Nursing was not even on my radar, One day in 2008 I decided to make an appt with a career counselor at sprott shaw college. Cole and I went in and we talked about my life and my experiences, careers I had considered and why.  joe my career counselor who became my friend, mentioned practical nursing, and something in side my brain clicked. I instantly flashed through my life,  focusing on when I was in highschool, to the time I was fighting my battle with high levels, When I grew sicker and sicker. I needed to be admitted to BC Children’s hospital , twice on long term admissions. I spent a lot of time around nurses and doctors. I was a bit resentful at times to all the authority around me, the people poking and prodding me and testing me. But at the end of the night, my nurses where my angels. They made me feel so comfortable. They helped me more than anything. I remember 3 nurses who impacted my life so much. I was a rebellious teenager and I was away from my friends, my family, my baby siblings and my home. For weeks on end and my family could not visit. I became very attached to a few of my nurses. One nurse in particular, she would end her shift and than come and sit with me, french braid my hair and talk with me about my day. I oped up to her and shared my feelings. I remember her smile and her kindness. I dont think I could have gotten by with out her. The next thing I knew, I was reaching over and signing the papers on the application and admission packages.

The process after that was a whirl wind. It all happened to fast. Next thing I know, I was getting my funding, a student loan and money from Cole. I did all my pre-requisitions, admission tests, doctors visits, immunizations and planing for school. I was registered for classes to begin in February 2009. I signed up in October 2008. In January I was started biology 12 as a pre reg for the course. At the same time, our home had flooded and we where in the middle of a move and has alot of our furniture. I had to finish biology, move and go through an insurance claim all by February to start classes. It was a very busy time.

Once i started school, it became all about my grades. I was determine to be a better student. To focus and to succeed. I did not work while in school, Cole supported us and bought all my low protein food so I could stay healthy and keep my levels low so I could focus, learn and retain what I learnt. My life became all about my grades and meeting my own expectations. If it effected Cole or I or my grades I cut it out. I really learnt who my friends where and lost a few along the way. I wanted to be a good student. I tried hard, studied harder, and tried every single skill on my practicums. There where of course a few moments where I was like ” what did I get myself into” But they where over come with moments where I was fascinated with learning. Everything interested me. I really grew as a person.I came into the course naive, never seeing any one naked expect cole of course ( laughing out loud at that) Blood and bodily fluids freaked me out and I did not have a care aid back ground like most of my classmates. I learnt how to separate though and I obtained what they called “nurses brain” like a switch that gets flicked and takes you away from those feelings and you just do it and over come it. I learnt that even though things use to make me cringe, helping people is what mattered. Looking after my residents or my patients was the my focus, it was all that matters, and it still is. I am helping them, and most times they are as emberessed as I am and grateful for the help. When I am at work, when I am with my residents, nothing phases me. I do everything I can to make them comfortable and happy. Yet nudity on tv and real life still makes me cringe a little with emberessement. Blood bothers me in large amounts but now i just switch on my nurses brain and be confident in my skills and let my hands take over.

Going through school and having the access to the low protein foods , keeping my levels low and feeling clear headed and accomplishment with my great grades, proved to me how important it was for me to maintain lower levels. My PKU and my health need to be the best they can be, so i can be the best me for my patients. One of our classes in school focuses on our rights and responsibilities as a nurse , one of those being related to looking after my body. I know I cannot practice or be a good nurse if my levels are effected. I cannot administer medications or preform a procedure if my brain is foggy. It is my right and my responsibility to my residents to keep my brain safe so I can give safe quality care.

Working shift work is hard on my body and makes it challenging to maintain low levels. Luckily I work in such a great place. I also work 8 hour shifts. On my day shifts I need to bring lunch with me , normally my hardest meal of the day. I tend to bring salads, soups or pizza pops. Afternoon shifts I need to bring dinner. My low protein pasta does not keep well so when I am working I tend to bring mashed potatoes, cream corn and applesauce. On night shifts, I have a snack at 1 am, either something low protein, and than my breakfast at 5 am. Usually low protein bread or a bagel and my formula. luckily in my LCU we have a toaster, kettle and microwave.

Working sporadically and casually for 2 years since graduating , saw a roller coaster of levels due to finances and ability to afford low protein food. The less I worked, the less I could access low protein food. So then it was harder for me to work. Certainly yet another pku roller coaster.

Now since moving to kamloops I have been working regularly , and I filled a night line for 5 months temporarily. Worked casually again in September and last night started back on the night line. I never thought id ever enjoy a night shift , or feel comfortable. However I like the stability. I like having a set schedule and not being on call all the time. It has made it a lot easier to be prepared and pre plan. It is a bit harder to dedicate a day to cooking and baking as I am so tired on my days off , but i think i am adjusting much quicker this time around.

Looking back over the 3 years I have been an LPN , there has been ups and downs, with my body physically and my limitations with my back injury, as well as financially being able to maintain my low protein food usage. I wouldn’t change it for the world though. I know now this is what I was meant to do. I love my residents and have formed many bonds. I love working in just one place, and I love my co workers. I am very happy hear and can see myself doing this for many years to come. I do always have a back up though. If a time came where my back failed me or I was unable to be a nurse, my next best of course is a dietitian! I mean really could it have been anything else?