An open letter to Blood donors.
A humble thank you to my children who organized a drive and presented on legislative changes required in Canada to encourage plasma and blood donors and to the trauma team who never gives up on me. To Tanis Alita and Matt my neighbors and best friends for making all the right calls this particular night.
My name is Lisette Kingo.
I am an average person just like you. I came from, well not much, I worked hard, I grew a small business into a midsized one, I started a small charity to give back.
A business woman, a wife and most importantly a mother. There were good days and bad days, much like for you I am sure.
Then there was that one day when everything changed.
I had recently started feeling generally unwell, and like most of us would do, I tried to ignore the signs, blaming lack of sleep exercise and poor nutrition. So I ate better, I started running, sleep was hard to come by, but I did my best. I lost 40 lbs in a matter of weeks (and I was never particularly overweight to begin with). I got more compliments than ever before. Wow you look amazing, what is your secret? But on the inside, I knew I was reaching a breaking point. Something was seriously wrong.
Over the next few months, I spent more time in the hospital than out and received several diagnosis which turned out to be incorrect, and eventually came the official diagnosis of classical like Ehlers Danlos TNX. And autonomic nervous system failure, POTS.
I felt just the way you probably do right now…never heard of it. In short there are many forms of EDS. Mine in particular affects my connective tissue, any hollow organ or artery is held together by collagen and TNX. In short, I was told... my body was a house built without mortar. There is no cure. I could stand here and tell my story from beginning to end but I don’t want to bore you with all the details. Instead I have chosen to focus on one night in particular.
My son who was 12 at the time and my daughter 14. All I wanted for them was to be happy. Have a normal stable childhood. But the past year had been anything but.This particular weekend my boy had a hockey tournament in Buffalo. I had been home from the hospital for a couple of weeks and was feeling stable. I didn’t want him to miss out on anything else. I practically pushed my husband and son out the door and told them Maija out daughter and I would be perfectly fine for 2 days , after all they would be 45 min away If I needed the
Shortly after they left, I started getting chills. I took the regular Tylenol and waited but the chills turned into a temp and I tried every which way to will the fever away. By early evening my daughter was scared. No amount of reassurance was helping. We are very close and she has never disobeyed me but when she asked if she should call the neighbor for help and I said No, she snuck into her room and called her anyway. The rest is a blur…
I recall being in the ambulance I recall saying, I am ok, I am ok. And I remember being really really cold…
As the hours passed and my recollection fades, my family has filled in some of the blanks of that night…and the weeks following. My little girl left alone at home….when at 1 am the phone rang it was the hospital, They asked her for an adult, not knowing what to do, she put them on hold and ran two doors over to our neighbors house and banged on the door until he answered. Our neighbor took the call. After a few minutes on the phone, our neighbor put the phone down and spoke to her. She was told that that they had to intubate her mom and asked if she knew what that meant, she answered I watch Greys Anatomy, I know.
Moments later my husband got the call in Buffalo. He got one of the hockey dads to come into his room to stay with our son. Once he reached the parking lot his phone ran again. My CT scan was back. Things didn’t look good and if there was any family, they should probably be called immediately and come in. He ran back up to the room and woke a sleepy boy to tell him he had to go and quickly. In his words the drive back from Buffalo was a blur. He was on speaker phone with the hospital most of the way, he didn’t want to ask to many questions as our son could hear and also he knew that the CT scan had shown that there was bleeding in the brain. I was in critical condition on life support and he was not there.
That night I received 7 units of blood one unit of blood consists of approximately 525 ml. An average human body consists of 4.5 liters of blood or 8.57 units of blood. I basically received an entire human worth of blood in one night. I was in septic shock when I arrived at the hospital, but what I didn’t know was there was something worse that sepsis, it is refereed to as DIC, Disseminated Intravascular coagulation, I was basically bleeding out.
My babies never saw me like that. My husband didn’t want that to be the way they remembered me. He spent the next 5 nights in the ICU by my bedside.
Because of your blood donations, that is not the end of my story. Because YOU choose to give of your time and of Yourself (literally) My children still have a mother. A mother who got to attend both their grade 8 grads. A mother who cried happy tears when her boy received the inspire award, because he wrote an essay on the privilege of being alive and the importance of giving back and standing up for one another. A mother who threw the biggest baddest sweet 16 party she could afford for her daughter where she embarrassed the heck out of her by performing a rap song in front of 70 mortified teens.
My journey is far from over. But inadvertently you are all part of my journey. Everyone of you who have donated blood or supported the blood bank in someway … you are part of all those events. You are part of every celebration, every laugh and every memory..
Since that day. I have survived 7 traumatic surgeries. Most of which required several units of blood keep me alive. In addition I have also been through 6 more events of sepsis. I often ask, why me? Not why did this happen to me, but why do I get the privilege to still live? Every day is a struggle. Everyday the pain reminds me that I am still privileged enough to live. Everyday is not easy but everyday I am grateful. I have been dubbed Miracle girl at the icu - but I am not the miracle. All of you are.
In addition to my many many medications to manage symptoms and pain, I currently receive blood products IVIG every 14 days, plasma to help my body fight infection. As well as blood every time I have an internal bleed. ( which can be anytime any day) This is something that will have to continue for the rest of my life Blood is not just something needed after an accident, it is needed on an ongoing basis. The need for blood does not discriminate. I am just like you. A Person, a wife, a mother.
A mother, who with your help, may get the chance to attend a high school grad, or perhaps get to wipe a tear of pride at a university grad or if I even dare to dream that big, get to see my children get married.
All of you here tonight have given me the courage to dream those dreams again, the dreams that died the day of my diagnosis, because you have all saved me before and you continue to do so, every time you donate blood.
I humbly promise to continue to live the best life I can to honour all of you. To do the very best I can in paying it forward and helping those I can help. To raise kind loving children who will help make the world a better place in your honor. Because after all without you, there would no longer be a Me.