In the Waiting Line

This post is a tribute to my dear Zio Nello. RIP. xx

My mothers family all live in Italy and France. My mum tries to go over every year to spend some time with her brothers and sisters. She had 7 siblings. She has lost three brothers to different types of cancer and now one of her sisters has been diagnosed with cancer of the spine. My Zia Rosetta and I are like two peas in a pod and I know she will get through this as her constitution is stronger than anyone I know.

My mums last living brother was a fit and talented 81 year old. Never sick a day in his life and kept his body and mind youthful by doing what he loved, carpentry. His stair cases and doors are a true marvel. One day he was telling jokes, the next he was gone. I was devastated. I was devastated for my mother and my Aunties but especially his wife, children and grandchildren. Luckily, my mother was had been in Italy at the time and was able to mourn with her family by her side.

It got me thinking how lucky my Uncle was to never of been sick. He honestly had been blessed and his smile showed how much he truly appreciated his lovely, healthy body. He was surrounded by people he loved and he lit up my world, even though we lived so far apart. He was just one of those people that made a lasting impression. He was such a peaceful, beautiful, grateful man.

I think about death, probably more than most people. I’ve even chosen my funeral song. Not because I think I’m going to die young, but because I am not afraid of it. So many beautiful people I know have passed. From a young age, I was taken to funerals of close family and spending so much time in hospitals, I’ve also witnessed deaths of strangers. Growing up on a farm, I have buried many pets and remember making little wooden crosses for them. I know dying is the sacrifice you have to make for living.

I had an emergency situation on Saturday night. Our dog Karri, woke us up about 3.30am. She had already woken Dan up twice to go outside for a wee so it was unusual she woke us up again. In a daze, I felt wetness all around me. I sat up, turned the light on and noticed that somehow, my catheter had unscrewed itself from my dialysis machine. Water was coming out from me and the machine. Bad news. You are taught that your catheter must never touch anything but a sterile cap or the machine. There is was, lying on my sheet. I quickly screwed it back on and called the ‘on call’ nurse. She said I had to follow the protocol which was to head to nearest emergency department and get my catheter changed and anti-biotics injected into one of my bags. Great 😦

We knew what we had to do, so without saying a word to eachother, we got everything we needed and headed to Busselton Hospital at four o’clock in the morning. I still think Karri saved my life by waking us up straight away. Everything went smoothly at the hospital. One strange coincidence that night was with of the nurses that was looking after me. She was a kidney transplant recipient and had her kidney for 28 years. She was 40, had three children and the drugs she was on were the very first ones they used for transplantation. I immediately asked her ‘what was the secret?’ I wanted to know everything. She was humble and didn’t say much. Kept it very professional. I was gobsmacked but so happy to meet someone like me. Why do some kidneys last forever and some don’t? She gave me hope. Kidneys can last forever 🙂

As you all know, I had to contemplate the idea of not being eligible for a transplant, pending the results of some genetic testing being done on the kidney disease that left me in this situation at 9 months old. I couldn’t understand the emphasis the doctors were putting on these results as the disease wasn’t even looked at with my first transplant. I didn’t allow to think about it too much but only that if I got the dreaded news, we would sell everything and I would live out my days, in the sun. No mortgage, no responsibilities, just me and my little family living happily ever after in my ideal world……….. even if it were only for 10 to 15 years, as you just cant live on dialysis forever. I found ‘peace’ with the idea, even though I never allowed myself to believe it.

I have been trying to keep myself busy and not let the sadness of ‘what if’ creep in. The last week I have tried to embrace winter. Putting my raincoat and wellington boots on, grabbing my umbrella and getting amongst it. I have seen beautiful rainbows and seen so much freshwater overflowing into creeks and creating waterfalls, I have a new appreciation of this season which usually made me so sad. I’ve been living my beautiful life the best I can. Every time I take a sip of water, when really I want to scull a litre of it, I say to myself……… one day soon, not long now. When I do a bag exchange and think of the risk of infection each time……..I say to myself, one day soon, not long now. When I check my blood pressure and its high, I say to myself……one day soon, not long now. I spend my spare time googling pictures of tropical islands I’ve always wanted to go to and say to myself, one day soon. I dream of what my life would be like if I had another transplant.

Last night I got a call from my kidney specialist to confirm the results had come back from the UK and I DO NOT CARRY A MUTATED GENE!!!!! I wanted to shout out to him, ‘I told you so.’ I wanted to scream to the whole world, that I don’t carry a mutant gene. I wanted to tell anyone that would listen. Instead, I did a happy dance and waited for Dan to come home so I could tell him in person. He cried and held me. I knew from that moment, I was going to be ok. I called my mum in Italy, she cried and passed the phone to my cousin. She said to me her Father, my Uncle, is looking out for me from heaven. I believe her.

This means that Dan and my girlfriend can finish their work up to go on the Paired Exchange Program in October. My specialist said if nothing eventuates from that list that they will start preparing my sister to be a direct donor. I called my sister to tell her the good news and she said, ‘Maybe they could do a boob job while I’m under!’. Ha ha. God love her.

I will never give up on what my life could be like, with a new kidney. I have to believe that everyone I meet, and everything I experience each day, prepares me for my next phase in life. I just have to believe that I will get through the bad times because I have before and I will again. There now is a light growing brighter by the minute, at the end of the tunnel. I have to believe I deserve to reach this light and let it shine inside of me so bright, that I can conquer whatever is put in my way. The light, my strength, comes from all of you. Thank you for all your support.



6 thoughts on “In the Waiting Line

  1. love you so much, we all learn from you my beautiful maria, your strength and your courage are my inspiration and keep me going, can’ wait to see you, i’ll be there soon,love you.xxxxxxxxxxxxx

  2. Oh Maria, that is fantastic news. I always think and pray that you will get a new kidney. Now you are well on your way to achieving this. Your strength and positive attitude to life is just wonderful despite what you have been through. We all have a lot to learn from you. Look forward to your next post where hopefully you will get some even better news.

    Lots of love always
    cousin Mim

  3. Maria, you amaze me, I am sitting here, holding back the tears from running down my cheeks, what a wonderful post and more important a wonderful person,who deserves a long, happy life with your brilliant dog and fantabulous family.

  4. I’m so excited for you!!! I actually teared up with happiness to hear your AWESOME news because I know the relief and excitement that comes with such promising messages! You have such a beautiful outlook on life and hope that is inspiring – it has helped keep me at peace with my situation. I hope your new kidney lasts forever as you truly deserve it! 😀 And yay to your awesome dog for saving your life!

  5. U deserve it all my special friend. U sharing your story gives me strength, gives so many inspiration and courage for when when things arent so good to carry on. It’s all up from here for you, I feel it. Love always and forever. X

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