Being a Mom with a Chronic Illness

 

Being a Mom with a Chronic Illness

Being a mom with a chronic illness isn’t easy.  Nightly you worry that you will let your children down by being too sick to do something the next day. What if you get sick and end up back at the hospital? So many what ifs that you worry about in your own mind.

When I found out I had kidney failure, my biggest fear was that I would leave my children without a mother. My father passed while my mother was pregnant with me. Even now at 38, I wish I had a chance to get to know my dad.

While sitting in the hospital bed for 8 days, I thought about what will happen. Will my kids know how much I love them if something did happen? Would they remember me. (At the time Hayley was 11 and Spencer was 7.) Even now thinking about all this, I have tears fall. I remember the fear I was feeling like it was yesterday.

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My Kidney Story #NeedADonor

 

 

 

 

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Many of you know that I currently have Kidney Failure.

For those that don’t know here is just a quick write up about my story:

In April of 2012 I was rushed to the Strathroy General Hospital in Strathroy, Ontario by my husband, Mike. I was weak and couldn’t keep anything down and my weight had dropped dangerously low to 79lbs. (I had been sick for 2 weeks with what I thought was a really bad case of the flu and had previously been told I had pnuemonia which was wrong) After giving me with 2 blood transfusions, the doctor took vials of my blood and had it tested. It was determined that I had renal failure. (kidney failure)

I was then rushed to London Ontario’s University Hospital where I spent 8 days in the hospital. During those 8 days I came back to life thanks to an amazing medical team. (I was on my death bed and for the first few hours was in a transplant care room because they didn’t know if I would make it.) But I got better and was put on Hemodialysis on the fourth day there.

To explain how much toxins were in my body, the first day I was on Hemodialysis I was to be on it for 3 hours. Within 2  hours my machine was going off. The filter was too clogged to keep going.

I had dialysis 3 more times while in the hospital before I was discharged on the 8th day. I wasn’t suppose to go home until at least 10 days after I was admitted but I was doing so well that they discharged me.

I continued to do Hemodialysis for 3 more months after being discharged. It was really hard on my body because my body has a problem cleaning the toxins but no a problem with retaining fluid. So it was taking fluid off my body and causing my blood pressure to drop really low during dialysis. Hemodialysis isn’t easy on your body either. I would often need to nap during the 3 and a half hours and also for a 2 hours after I finished. I did Hemodialysis for 3 and a half hours 3 times a week through a dialysis catheter in my chest.

In July 2012 I had a 2 hour surgery to have Peritoneal Dialysis Catheter inserted into my stomach area. This allows me to do Peritoneal Dialysis in my home. While Hemodialysis deals with blood going through a machine, Peritoneal doesn’t. So it is lighter on my system. So no more tired feeling from doing dialysis and when I am off the machine, I can get up and go!

This is important because I have 2 children that I am still raising. For those 3 months on Hemodialysis, I felt like I was missing out on their lives. The only downfall is I do it every night for 8 hours a night. But like every medical procedure there are pros and cons.

My kidney disease didn’t happen due to medical problems like diabetes or high blood pressure. My kidney disease is due to genetics and the fact my kidneys were small. I never knew I had kidney disease until I went into failure. Looking back it explains a lot of why I was tired all the time and why I had troubled pregnancies. I also am hearing impaired and as I got older it got worse. My illness is Branchio-Oto-Renal Syndrome.

 

 

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Now I am sure you are wondering why I am sharing this information with you.

Well first it is because I feel people need to be educated about Kidney Disease and that it can happen to anyone. My reason that it happened to me is due to a genetic illness. It wasn’t because I had diabetes or because I wasn’t taking care of myself. It was what was going to happen eventually. And second, I am now looking for an living donor and also hoping to educate people about organ donation.

Because I have renal failure, I can have a living donor donate one of their kidneys. The beautiful thing about kidneys is you just need one for a healthy life! How great is it we have TWO kidneys. Being a living donor is one of the best gifts you can give someone. Give someone like myself , a chance to live a normal life. (Well my life will never be normal, after a transplant I have to deal with taking medicine for life and doctors appointments but if it gets me off the machine! I will take it!)

I understand it is a big gift to give. But I am looking for someone with O blood type. (negative or positive factor doesn’t matter)

I also am hoping that people will sign up to be a organ donor for when they pass. Please inform your family of your wishes.

You can sign up to be an organ donor ~ CLICK HERE 

 

I Received a Kidney Transplant on August 9/15. I received a deceased donor.