With Mom – 1984
On September 25 my mom and I celebrated our 20th Anniversary. Let me elaborate.
I had a Renal Transplant aka Kidney Transplant 20 years ago. My amazing, generous, gracious, selfless, beautiful and loving mom ended up being a match and donated one of her kidneys.
So technically she has given life to me twice. Now we celebrate our Transplant Anniversary aka My Additional Birthday, every year on September 25th. It’s kind of a big deal for us. A huge deal for me obviously. Without her I literally would not be here. Not a day goes by (not a 1) that I don’t think about the major sacrifice she made to save my life.
Twenty years ago I became extremely ill and was diagnosed with a very rare disease called Goodpasture Syndrome. Ironic name considering there’s actually nothing good about it. It is so rare that literally 1 in a million are diagnosed each year. I wish I could be so lucky with those odds in a lottery!
Doctors aren’t totally sure how I got it. Since it is so rare they’ve narrowed the cause of this disease down somewhat to, smoking (I don’t smoke) or 2nd hand smoke, hydrocarbon solvents, glues, diesel and Inflenza A, to name a few. It is an autoimmune disorder which damages the kidneys (and often lungs as well) with the worst case scenario obviously being death or you lose both kidneys. Which is what happened to me. You need at least 1 kidney to survive. Both of my kidneys failed.
As with any disease, early detection is paramount in being able to save your kidneys &/or life. But it’s not always easy to detect Kidney Disease early as it progresses silently and is less obvious then some other critical diseases. Sometimes Doctors can ‘re-boot’ kidney function if there is some percentage of the kidneys still working. The prognosis is much worse if the kidneys are already badly damaged by the time of diagnoses. The kidneys most likely will not be able to be ‘re-booted’/ saved at that point. Again, this is what happened to me.
Ironically I had also been seeing an Nephrologist (Kidney Specialist) for a couple of years regularly prior to kidney failure because I was constantly passing kidney stones. And I mean a lot of kidney stones. I was like a kidney stone making machine. Weird. I lost count after a couple dozen visits to the hospital in excruciating pain from a kidney stone. Yet, the Nephrologist assured me these stones were not hurting or jeopardizing my kidney function in the slightest. I believed him. After all, he is the Kidney Specialist. To this day Doctors still have not confirmed if the kidney stones had any influence in my kidneys failing.
Still not diagnosed, I had started to take a turn for the worse but I was convinced that I only had a very bad flu. I had all of the typical flu like symptoms, along with some not so typical symptoms. I was exhausted constantly, fevered yet freezing, muscles aching, vomiting blood, sweating profusely to the point my body would be soaked, weak beyond belief and so insanely tired ALL OF THE TIME. My Family Doctor told me 3 separate times during this 2 week period of feeling the worst I’ve ever felt, that I had nothing to worry about. She said I just had a Flu mixed with the fact that I was anemic and needed more iron.
My intuition told me otherwise. Something was terribly wrong. Both of my Doctors were wrong as well. Very, very wrong. I knew I needed medical help and I needed it fast.
It was a rough road for many years dealing with my health issues. You can read a bit more about that part of my health journey here.
I wanted to write about this milestone in my life for many reasons. The 20 year mark has made me more emotional and feel blessed beyond belief. It reminds me to appreciate the little things in life, so cliche but so true. And also, to go after your dreams, live the life you desire, while we can. Every single year since I’ve had this kidney transplant is a gift of another year of life. There is no greater gift that one can give. Really. Think about it. My mom gave me the gift of life. Again. I would’ve been dead 20 years already if I didn’t get a transplant in time. I wouldn’t have been able to watch my kids grow up which was my greatest fear when I was ill. During the couple of years that I was on dialysis I had seen several people of various ages die while waiting for a kidney match. It happens everyday because there are not enough organ donations available and that doesn’t have to be the case.
When I first got sick I was 25 years old, I didn’t know a thing about transplants. Even the word scared me because I didn’t understand it. At that time there wasn’t a lot of awareness about it. I actually thought the whole thing was a
little a lot weird. Awareness seems to be better now then it was, but I find some people still have no clue.
*Anyone can get Kidney Disease, but people with high blood pressure, diabetes, and family history are more at risk and should be checked by a Doctor regularly. I did not have any of these.
*15 people are diagnosed with Kidney Failure in Canada daily.
*1 in 10 people in Canada are living with Kidney Disease.
*Average wait time for a kidney in BC is 5.4 years. Many will die waiting.
*Up to 40% of people who are desperately waiting for an organ will not get one in time.
*People think that being on dialysis is a cure. It is not a cure. It is just a means to keep you alive (barely) until a transplant is available. 50% of these people on dialysis will not live past 5 years.
*Kidney Failure is chronic and there is no cure. Dialysis is temporary and short term. Transplant is also temporary but allows the patient to live a more normal life while taking anti-rejection meds daily. Transplants do not last ‘forever’. However, with continuous research and updated meds, transplants can last 20+ years. (I’m hoping and prayin’ I break all kinds of records and it lasts 20 more!)
It is so important for you to have conversations with your families and loved ones about organ donation. If you do wish to be an organ donor if something should happen, then it is critical to let your family members know this. And equally important to actually have it registered on your Driver’s License, Health card or the Donor Registry in your city.
I know that no one really wants to talk about death and what happens afterwards. It’s a difficult conversation for sure. It’s also reality. But the way I look at it is, organ donations save lives. Lots of lives. If one of your loved ones was critically ill and going to die, wouldn’t you want to know there’s a good chance of them being saved because someone else had generously requested to be a donor themselves?
I was blessed that my kidney donation was from a living related donor, my mother. Anyone that is healthy and wishing to donate a kidney to a loved one is certainly encouraged to do so. My mom is a trooper so if you ask her, she’d say the surgery ‘wasn’t so bad’. It isn’t exactly a walk in the park for the donor. I’m not going to lie. However, our transplant surgery was 20 years ago. From what I’ve read and heard the surgery has changed and is much less invasive now. I’d be willing to bet that she’d say it was worth it. Right mommy? 😉
You can find out much more information online to answer any questions you may have.
Here’s to us Mom! And to another 20!! Love you! <3