Effervesce.

When life knocks you down, calmly get back up, smile, and say. "You hit like a bitch."


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Support.

We have the best Family and Friends. Throughout this whole transplant journey, with the ups and downs, the devastating news, the good news, the support we received was amazing. When I told people our first transplant was cancelled, people really rallied around, we were phoned and comforted and everyone cried with us, it wasn’t just contained between the 4 of us, we all got support from our various family and friends, it was such a devastating blow. When we got the good news, everyone was overjoyed with us.

In hospital on the 21st of May this year, waiting for our surgery, we were phoned, sms’ed, e-mailed, whatsapped and there might have been some smoke signals from New Zealand too! Hahahahahahahahaha!!! Stian’s family sent sms’es to Elize and Stian, their friends phoned and texted, our Family from all over the globe sent texts and e-mails, Pete’s sister Cathy has been such an amazing support for us, her and her husband Chris has been there for us through thick and thin. When I started dialysis she would phone Pete all the way from NZ almost daily, she was so worried about us both, but she very importantly let Pete talk, he was going through such a tough time and his Sister was very much there for him, he really needed it. Then Pete’s cousin Jean in England Whatsapped us quite a bit, she would send messages and prayers, it was so good of her. Pete’s other cousin Bridget in Natal was also such a sweet support for us. My Mom couldn’t be with us at the hospital so she phoned alot, sent messages and was just there in spirit. She was the taxi driver for the day, had to take the boys to hockey and to music lessons. She was a great help that day. Pete’s parents are quite old and dealing with some serious health issues at present so we didn’t ask them for help, they were dealing with enough as it was. But they phoned often and always asked how we were doing and how we were holding up. They were so excited to hear we were going to finally have our transplant.

Then there are my friends, my best friend Tanya is such a sweety, she’s always BBM’ing to see how I’m doing, can get rather heated if she feels I don’t listen! Hahahahahaha! But she was so supportive the whole time. Her husband Steve actually showed up at the hospital when Elize and I were in theatre, Pete and Stian really needed it, they were freaked out of their minds because we were gone so long, so him showing up at the hospital was a real Godsend.

I have some very special friends in Cape Town, Brenda and Luke, they BBM’ed me lots on the day of the transplant, and kept me busy when I was seriously bored in ICU. They were both so supportive while I was in hospital, when I had a scare they would be there on my phone talking me through whatever I was feeling. They haven’t met each other, so when Pete and I go to the Cape again we are all going to have lunch or coffee together. My oldest friend in Cape Town also sent me messages of encouragement, it was so sweet to hear from all my friends. I would have loved to see my CT friends in hospital, but it’s a bit far you know!

Then we had great support from Pete’s best friends, Leon who lives in New York and Matthew and his wife Isobel who lives in Canada, they e-mailed and Facebooked and generally encouraged us through all of this. It’s hard when good friends are far away, sometimes you just want to hook up and have a visit, but we will have to make a plan with that and go see them some time.

Then I have a friend in Australia, Donald, he’s such a sweety, he’s always on FB liking this or commenting on that. And Mike, always been supportive of Pete and I he’s also been with us through thick and thin, such a sweet person really.

And Effie, our sweet Greek teacher and Essie our friend in Mauritius, they have been so sweet through  this whole journey.

And then there is my little Sis, Simone, she is a true warrior that one, feisty and always there, she wears her heart on her sleeve, and even though she has gone through some major crap in her life, she will put it all aside and be there for us. She is such a part of our daily lives.

And my Sister Elize and her husband Stian, they are our rocks, we know we can always rely on them no matter what. WE as a family will be eternally grateful for what they have done for us, it has been such a privilege to have them be such a huge part of our lives. Greater support we could not ask for. On a later date I will post what my Sister has gone through for this transplant.

I would like to thank each and everyone who is a part of our lives, and our journey from the bottom of my heart, without these people in our lives, it would have been pretty lonely.

“Life without thankfulness is devoid of love and passion. Hope without thankfulness is lacking in fine perception. Faith without thankfulness lacks strength and fortitude. Every virtue divorced from thankfulness is maimed and limps along the spiritual road.”- John Henry Jowett


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Our hospital stay.

So last week I wrote a looong post about our transplant journey,  with many ups and downs along the way.  Today is all about our hospital stay. As I said last week, we had fun and games on Tuesday while we waited for our transplant.  We actually had a blast,  we weren’t nervous at all, that came later! Pete and Stian got hungry so we sent them for breakfast, and we were quite jealous that they could eat! We were starving!

In ICU I wasn’t very mobile,  although they forced me into physio (HATED) it!!!! Was sooo bloody painful. My Sister was in the big general ICU area and I was in isolation. I really hoped they would put us together but they couldn’t, I had to be in isolation.  But she visited me often, I went to see her after 3 days. We visited each other quite often. She would come to my room and I would go to her bed, both of us doubled over with pain. It was quite a sight for sore eyes! But as the days passed we walked more upright.

My Sister and I showing off our new hospital bands.

My Sister and I showing off our new hospital bands.

My gorgeous Sister.

My gorgeous Sister.

Keeping busy on my Tablet.

Keeping busy on my Tablet.

Not really sure what Pete was doing here with my scarf, probably needed to snooze.

Not really sure what Pete was doing here with my scarf, probably needed to snooze.

Sporting our sexy hospital gowns.

Sporting our sexy hospital gowns.

My Sister being wheeled to the theatre.

My Sister being wheeled to the theatre.

This was when things became real, suddenly the porter arrives to whisk her away. This was a difficult moment for me.  I couldn’t’ help feeling guilty, if I had normal kidney function my Sister would not need to go through with it. I knew what she was in for.  Thank goodness she didn’t have the massive surgery through her back, but believe me,  she was in a world of pain.

It’s so good to be on the other side of this.

Elize had left at this point, and I was waiting for the porter to fetch me, an hour they said, so I had to catch up with people quickly.

Elize had left at this point, and I was waiting for the porter to fetch me, an hour they said, so I had to catch up with people quickly.

DORMICAM!!!!!!!!

DORMICAM!!!!!!!!

I was pretty cooked at that point!! So nice I must say, I felt very mellow and sleepy.

My first anti-rejection drugs before the transplant.

My first anti-rejection drugs before the transplant.

I had to take my first set of anti-rejection drugs before the transplant.  I was worried that I would have side effects,  but luckily I didn’t.  I had no idea what I was taking, now I can do this with my eyes closed.

I was pumped with 5 liters of water to put the kidney under pressure,  it was really not great, but I know it was necessary.

I was pumped with 5 liters of water to put the kidney under pressure, it was really not great, but I know it was necessary.

This was the day after the transplant,  I felt like the Michelin man with all that water in me!

After the transplant.

After the transplant.

2 days after the transplant,  I was feeling heaps better.  The dreaded disequilibrium had dissipated somewhat,  I still feeling rather ill here, but getting better.

My Sister visiting me in ICU.

My Sister visiting me in ICU.

ICU visit.

ICU visit.

The view from my isolation room.

The view from my isolation room.

The staff in ICU were amazing, they really did their best for us, going up and down seeing how we were doing and reporting back, so sweet.  Apart from my Sister’s first Sister who was a right bitch to her, awful bloody individual, and my last Sister, also quite an awful person, she really should choose another profession. But for the rest, we had lovely staff.

Sweet patient Letta, my physio therapist.

Sweet patient Letta, my physio therapist.

Aaaaah, good ol’ physio therapy. Letta was THE most patient person with me. I did NOT want to move.  I just wanted to be left alone. And she explained that it was not gonna happen.  So with tears and fighting with her I relented.  Luckily my Mom had arrived by that time and she could bring a bit of balance to the situation,  she asked Letta to give me some time to settle a bit and to come back later.  I did make a new friend with one of the ICU Drs, Liam, he came and patiently explained why physio was needed, and after that I felt more relaxed about it. We had to do physio twice a day, hectic stuff.

Getting unhooked from all ICU wires just for a little break.

Getting unhooked from all ICU wires just for a little break.

Every now and then I would get a little break from all the wires, it was such a relief to get unhooked,  I could go and see my Sister or go to the loo, quite a novelty for me at that stage!

Eventually in the afternoon of day 4 my Sister got moved to Highcare, she still wasn’t weeing,  so they had to monitor her closely.  I was freaking out at that point! But she seemed quite calm, probably just to not freak me out as I know her to do. I begged and pleaded to be sent to the ward. Eventually the Drs caved in and sent me on my merry way after 5 days in ICU.  If I left it up to them they would have kept me there for 7 days.

Our selfie.

Our selfie.

We really had a blast up stairs in the Transplant unit.  We visited each other quite often.  We went walking all over the hospital and the car park to get some mobility back.

My Sister visiting me in the ward.

My Sister visiting me in the ward.

I had so many drips and needles in me that when they were all removed when I went home my arm looked positively zombie.

I had so many drips and needles in me that when they were all removed when I went home my arm looked positively zombie.

When Elize got discharched and went home I really missed her. It was an honour and a privilege to share this with her and spent 8 days together and recovering from the surgery.  She truly is such an amazing, selfless and generous person. Few people would willingly go through major surgery for someone else. She is my Hero.

“There is no better friend than a Sister, and there is no better Sister than you. “

“A Sister is a gift to the heart, a friend to the Spirit,  a Golden thread to the meaning of life.”

“A Sister is a Forever Friend.”


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Bloody Army Wives!

Last night’s Army Wives brought back a flood of memories to me. Devastation. That’s what I remember. Nobody can prepare you for that. Those words, “You have complete renal failure, sorry.” You have to get your head around that. It didn’t hit me at first. It looked like I really handled. But later, it hits you. Between the eyes. Hard. And there is no cure. No therapy to make it better. When I met with the transplant co-ordinator she told me that a transplant is not a cure for renal failure, it’s just medication. My heart sank.

And then you get sent on your merry way. Your first stop is to have a fistula placed in your arm. And because it takes 6 weeks to “ripen” you need a permcath in your chest, to dialyse immediatly with. Your family raleighs around you their heads spinning. Everyone thinks about being a good match.

I had the same argument with my youngest. He said it’s his choice and when he’s old enough he will give me his kidney. So sweet. And my Sister actually was a good match. But because there is a chance that she might get the same disease she was not a viable match. My Sister didn’t care. She wanted to be consulted on the whole deal, but Drs make the final ruling, no-one gets a say.  This could have been my story. I was also told they would put me on the list. And yes it could take years. We cried. What else can you do when hope gets taken away so swiftly?

And Heamo Dialysis is crap. I asked a patient who did both Peritoneal Dialysis and Heamo Dialysis for various reasons, which one she preferred? And she said that both were pretty shit. I must say I don’t agree, I far prefer PD, it’s not as harsh on your body. When I did HD I was a non-functioning person, my hair was falling out, my blood pressure was so low I could hardly walk. I suffered with dizziness and nausea all the time. You feel like crap after your treatment, so ill and weak.  You have one day to recover then it all starts again. I hated it.

It was difficult watching Army Wives. I find it hard to re-live that devastation, it’s not how it was meant to be. I do feel guilty for putting my family through all of this. It’s very hard for me, I so want this to be over so that my boys can have normal lives again.  And waiting is the hardest part. You hear stories of patients who had live donors and they are all doing so well. And I’m still waiting. That is very hard. But I will wait. There is nothing else I can do.

“Health is like money, we never have a true idea of its value until we lose it.”  ~Josh Billings