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 1st Kidney-versary

 

 

Today I celebrate my 1st Kidney-versary!

A year ago today at 5am, I woke up in recovery and was told by the nurse that surgery went well.

It felt like 15 minutes passed during the surgery, not 5 hours. I was extremely happy that it went well and it was done. I can’t explain the feeling that came over me even though I wasn’t quite with it due to the anesthesia. I was just feeling complete happiness. I can only compare it to the day I gave birth to my children and my wedding day. I was in extreme bliss and I swear that I didn’t stop smiling until I ended back in my room.

My kidney transplant story

I wish my first day was easier but I really didn’t enjoy the effects of anesthesia had on me since this was my first major surgery.

A few days later though when I was able to eat food, was amazing. (I am sure I will use the word amazing a lot in this post but really nothing can fully describe everything that I was feeling this past year.) I had never been one to love chocolate. (I know! Who doesn’t like chocolate!) And the first real non-liquid meal I had, I had a chocolate pudding for a snack. I actually tasted the chocolate and really tasted it for the first time. All my food at that point tasted so much better.

me walking

I slept sitting up probably for the first few weeks. Laying down hurt too much and I also took awhile to sit up. So I found that sleeping in a chair with my feet up worked best.

I got use to the effects of the medication the first few months. One time I was crying for no reason playing Canasta online. I was told later by a nurse that it was because of my medicines and because I had been through such a huge traumatic life change.  It was all catching up with me. It confused me because I was happy.

This past year I have been able to travel without a machine. Even going away overnight isn’t a chore anymore. We went on a week camping trip out east in July with the kids. It was so nice not to have to worry about bringing a machine and a lot of supplies. If I had done that on dialysis. I would have had to packed 11 boxes of solution plus supplies plus my machine. We wouldn’t have went.

My husband and kids have me back fully now.  I find my son is completely different in that he doesn’t have anxiety like he once did. He is now able to sleep in his own room and plays upstairs alone. All these things were something that he wouldn’t do before. He was always afraid something would happen.

pd machine

Seeing my dialysis machine leave my house was a big bonus! But sometimes I feel like the hospital will be calling me and saying that I have to hook up. It is like you worry that you aren’t suppose to give it back and should still be on it. I think it is reasonable to feel this way since I was on the machine every night for 4 years. I also feel guilty eating salty foods. I try to balance my diet so I am still eating good for my health  but allowing myself treats that I never could have on dialysis.

I had a pretty good year in that my kidney is acting like a kidney that has never been transplanted. My creatinine ranges from 52-76 (Canadian creatinine numbers). My creatinine before surgery was 1600, so that gives you an idea on how great it is working!

Only things I have to do while having a kidney transplant is to:

  • Not eat grapefruit. (Affects my meds.)
  • No herbal medicines.
  • Wear SPF 50 or above sunscreen every time I go out (even in the car).
  • Wear a hat.
  • Stay away from sick people. (very hard sometimes since people when they are sick still go to functions. )

The sunscreen and hat is because I am more able to get skin cancer on my prescriptions so to prevent it, I need to remain covered.

I was lucky to get a kidney so quickly. Many wait years and years.

With every thing that I do, I think of my donor. His gift is why I am here where I am today. While a transplant is not a cure, and rejection can come at any time. I plan to do everything that I can before that moment comes. (Hoping it never comes). I understand not everyone will want to donate their organs when they pass but I hope that everyone on my Facebook page will consider it. My donor gave me a life that I never knew existed. I have never felt this was in my whole life. He also gave me a chance at life.

be a donor #BeADonor

Sign up to be a donor here: http://beadonor.ca

 

Read the beginning of my journey HERE

Read my full transplant story HERE