Effervesce.

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


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Daily life.

My daily life has been so different from the transplant.  I’m not constantly thinking about what I’m allowed to eat and what I feel like eating but not allowed to eat. I don’t have to plan my meals anymore,  I just open the fridge or pantry and eat what I feel like. I do follow a healthy lifestyle,  because gaining weight is not an option for me, having one kidney excess weight becomes dangerous as the kidney will work harder than it should, so I do make sure I eat healthily.  But, nothing stops me from indulging every now and then.

I have such freedom from a restricted diet.  It has been so liberating.  The best however,  and will always be one of the best perks with having a working kidney.  We can go out without having to rush back home to prime my PD  machine so that I can dialyse at 6 in the evening.  The silence in our bedroom at night is just bliss, we used to imagine the silence at night,  and now we have that, so good.

Pete and I still just marvel at what happened,  we have permanent smiles on our faces.  And going to the loo still amazes me, I’m still smiling when go to the loo, I look really goofy, so I’m just so glad nobody sees me on the loo!!!

Energy, that’s a very important change to my day. I’m exercising daily, something I just didn’t have the energy for. I do Yoga and I just love it, at first I looked at the poses and thought “Hell no!” But I have just fallen in love with Yoga, it has been so good to get active again, that has ben wonderful.

I’m also sleeping better, I still go to bed late, like midnight,  habit I suppose, but when I sleep, nothing wakes me up, except off course my bladder, but that I really don’t mind!  Goofy smile at 3 in the morning is optional though!  I’m seeing my Dr on the 28th of August, I did have an appointment next week Wednesday,  but I had to move it because we want to go on holiday.

So all in all my daily life has changed dramatically.  And I just LOVE it! Every minute of it.

“Keep your eyes open to your mercies. The man who forgets to be thankful has fallen asleep in life.” Robert Louis Stevenson

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My new kidney function

I have been going for weekly tests every Thursday now, and I am happy to report my shiny new kidney is working beautifully. My creatinine clearance is 92 at present, my filtration rate is 67. My potassium is normal and my phosphates are low. Who would have thought that low phosphates could make me so happy? I am eating phosphate rich foods every single day, but my phosphates remain low. It’s astounding, really it is. I’m not on any kind of special diet whatsoever. My Dr just told me to have a normal well balanced diet. Now that for me includes Avocado on a daily basis. I drink coffee, eat chocolate, bananas, potatoes, whatever I can think of, I eat. Without feeling like I’ve just done myself an injury. It truly is such an amazing feeling. I keep waiting for  the novelty to wear off, but it just doesn’t. I’m certainly not complaining about that, lemme tell ya!

It’s been up and down with my anti-rejection drugs, but I was told that was perfectly normal. My one drug gets adjusted both up and down depending on how I respond to it. Currently I’m on a lesser dosage, so I’m so happy about that. The cortisone has been tapered off every 2 weeks or so, also depending on how my loods look. I’m currently on 12.5mg daily, but I started on 60mg daily. that was pretty rough!

When I got home everyone asked how I felt being home. Was I just so happy to be with my Husband and boys? It must be so good to be back in my environmen. How does it feel to not dialyse every single day? I must feel so happy and pleased? YES! Off course I felt all of that. I love being home, I’m such a home body, I love being here for Pete and the boys. And not dialysing everyday? I don’t even have to tell anyone what a relief THAT is!

But in all honesty? The overriding feeling I had when I came home? H-U-N-G-R-Y!!!!!!!!!!!!!! All I did for the first 2 weeks at home was EAT!! I ate everything that wasn’t nailed down. Pete thought that was just the funniest thing he ever did see! I think he got worried at ne stage. He would see me eating AGAIN and say “Honey? Eating again? Aren’t you still from lunch?” HA! lunch was at least 45mins ago, I’m starving!!!!!

That’s how it would go for 2 weeks, then I decided ok, enough of this eating Monster stuff. And it was pretty difficlt in the beginning, but luckily the Dr lowered my Cortisone dosage every 2 weeks, so it got easier to eat less. But I really enjoyed it, eating whatever I wanted was great.

Cortisone is pretty hectic stuff. I would shake like a criminal in police custody, had hectic moonface, and mood swings. Wow. I’m so glad to be over most of those side effects now. I’m not a Cortisone fan, I don’t know anyone who is. I will be on a low dosage of Cortisone for he rest of my life. But I really don’t mind, it’s one of 3 anti-rejection drugs I happily take. My Sister’s kidney is such a precious gift, I will do whatever I need to keep it safe. I don’t want her to be without a kidney for no reason.

She said to me just before the Transplant that if anything happens and the kidney doesn’t take, at least we tried. Gosh, she really is amazing. I would have been devastated for both of us if it didn’t take. Thank God it was hugely successful. And we have both recovered really well. I’m still so proud of my Sister.

i can n ow look forward to some cool holidays with the family and not wondering how we will fit that big ass dialysis machine and all the glucose solution in the car. That was a nightmare. Best of all, no rushing back at a certain time to dialyse! That’s just awesome!

“If you think sunshine brings you happiness, then you haven’t danced in the rain.” -Unknown


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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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First post of the year!

Well, it has been quite a year! I actually have no idea where to start. It has been quite a journey, the beginning is probably best. So last year our transplant got cancelled here in PTA, the Dr had all sorts of dumb excuses for cancelling the transplant.  We were just devastated.  We really didn’t know how we would ever recover.  I became quite depressed for about 3 months, then one day my Sister phoned,unbeknownst to me, while I kinda gave up, she was researching. She found a hospital in China that does all sorts of weird and wonderful therapies, she e-mailed them back and forth, sent me links, but when I tried to view them, they no longer existed, it was all a hoax.  I couldn’t believe my amazing Sister never gave up, she just carried on, silently until she found something. Amazing. It was a pity it was all a hoax, but that sparked a memory in me, I remembered a lady I dialised with who said some Dr in the Milpark hospital does stem cell therapy. So we promptly made an appointment to see him. He was such a nice man, he said I cant to stem cell therapy but I can have a transplant.  Say what now?????? Pete and I were blown away. We saw a new transplant co ordinator, my Sister and I went with our husbands to meet her and hear what we needed to do still. She sent us for more tests, then we were finally finished. So my new Dr presented to the board, 12 Nephrologists were present, but only 2 gave us a yes, the rest were all a resounding NO. The dumb transplant co ordinator in PTA wrote on my file that I have familial FSGS. Stupid cow. He called and said he needed to see my Sister and I. We went knowing this was not going to turn out well. he spoke to us regarding the diagnosis of familial FSGS, nobody actually tested my Sister by the way. All based on fear and assumptions. My Sister then asked what could be done, what if she wrote a letter to the board stating she understood the risks but she didn’t care either way, would they go for that? He was dubious to say the least, but he said she could give it a try. But that was December, we had been busy with this Dr since October, so they all promptly went on holiday. Then on the 7th of January, my Sister and her husband sent their letters of petition in. We waited about 6 weeks, then the call came, they actually approved us! We were ecstatic! It was finally going to happen! I was with my Mom when the call came in. It was just the best news ever!

But then we got our second devastating phone call. Man, I was so angry. Apparantly my shiny new Dr felt uneasy with the transplant, I was too much of a high risk for him, with FSGS and all. He didn’t feel comfortable doing the transplant. what a blow.

But then my new Dr phoned me a week later and said he made an app with another Dr at the Donald Gordon Medical Centre. I am to see that Dr in a month. As you can well imagine, we had very little hope. So a month goes by, neither myself nor Pete felt like going to that appointment.  As a matter of fact, we were VERY close to cancelling the appointment.  But we went anyway. Saw this new Dr. and he asked me why the other Dr thought I was high risk. I told him it was because of FSGS. He looked at me and said “So?” I just stared at him in astonishment. He then told us they do FSGS transplants all the time. Even the explosive type that kills kidneys within 2 to 5 years. Say what now??????? We were blown away. That was the 29th of April this year. He then said he cannot see why we couldn’t have the transplant within the next month! That blew us right away! We practically ran out of his office with the letter he wrote saying I was fit for transplant and phoned my Sister. She was SO excited! So very excited!

So my Sis and I went and saw our 3rd shiny new co ordinator, who was incredibly helpful. We really thought we were finished with all the tests, but we were wrong, this hospital is THOUGROUGH! Let me tell you! Luckily we were a good match. Well DUH, off course we are a good match! So when all the tests were done and everyone was happy, we saw the transplant Dr. He saw my Sis first, he needed to make sure I wasn’t pressuring her into giving up her kidney. She told him she really appreciated his concern but she was doing this willingly. He said to her, “You can DIE you know?” She said, ever so calmly, “I don’t care, I know the risks.” I said to her well no-one asked me, and I would most certainly care if she died, that was the last thing I could cope with. My Sister actually said to me on one occasion that if she did die, she doesn’t want me to feel guilty, I must know that she did that knowing the risks and she wanted me to have as normal a life as possible. Yeah. NOT gonna happen!!!!!

She was terrified he would find something wrong with her. it was quite funny, My Sister can get quite anxious when the unknown is looming. But all was well. He then saw Pete and myself, spoke to us about surgical risks and all that can go wrong, and right actually, then he said “How about next Tuesday?” Pete and I just stared at him. Pete asked if he was joking? No, he doesn’t joke. Do we agree with next Tuesday? Uhhh, jaaaaa! I went out to see my Sister who was in the waiting room, she was beaming, he already gave her the date, and I was just freaked out, totally freaked out! We actually couldn’t believe it happened so fast, that’s when you know God got involved.

We were given a week to notify a list people, shop, make lists, organise the boys, and I had to cook !0 days worth of food for Pete and the boys so they wouldn’t have to live on take aways. It was hectic, let me tell you.

The 4 of us arrived at the hospital at the same time on Tuesday morning 21 May at 6 am sharp. We booked in, got sent to a private room, and had high jinx all day long, entertaining our husbands and the staff. There was a Brother and Sister transplant ahead of us, a difficult case so we waited quite long. But then it was our turn, My Sister went in first, it was hard watching them wheel her out, I knew what she was going to go through. And and hour later they came for me. 5 Hours later, my amazing Sister was one kidney short and I was one kidney richer. It was such an amazing and difficult time. If it weren’t for my Sister’s dogged determination and challenging the Drs and their narrrow minded mindsets, and her dedication to the cause, this transplant would not have happened.

We made it very clear to everyone that this was our journey, Only the 4 of us were involved in the decision making process. This was a deeply personal journey and any and all opinions were not welcome.

It was quite difficult for my Mom on the day of the surgery, she desperately wanted to be with us at the hospital, but she wasn’t allowed to be there, so she phoned, a lot! It was wonderful having the support of our family and friends on the day, but in the end, it was the 4 of us who had to go through this. I say the 4 of us because our husbands were as much a part of this journey as we were.  Although they didn’t go through the pain of surgery, they were our main care givers at home, and it was very difficult for them to see us in so much pain after surgery.

In ICU I was in isolation and my Sister was in the general ICU area, it was so difficult, I just kept asking the staff  and Drs how she was doing, they kept telling she’s doing so wonderfully. It made me feel more comfortable, that is until I actually saw her 3 days later, she was not so wonderful, she was very ill and vomiting constantly, hadn’t eaten and wasn’t peeing. I was so shocked! And very very worried! I couldn’t believe everyone was telling me how fabulously she was doing. I was quite pissed off at that point, and complained bitterly to my Dr, he just told me it was all normal. My ASS!! I had a nephrectomy in 2006, and didn’t go through any of that. And I had the difficult surgery, 2 ribs off and through my back, no keyhole surgery, so I was quite alarmed when I saw her. She recovered quickly once I told her to stop all anti nausea and pain meds, her system could actually recover from there. When she was better she resumed the morphine and handled very well.

My Sister actually said to me on one occasion that if I ever feel scared and not comfortable with the transplant I can pull out, I must never think I will disappoint her if I didn’t want to go through with it. UUUUH……. should I not be saying stuff like that? We spoke about the transplant extensively over the 2 years we were trying to get a Dr to do the actual transplant, and not once did my Sister tell me she was afraid. The only time she felt a bit scared was if they did a nephrectomy through her back, the one I had, very painful and she knew it. But thank God, she had keyhole surgery to remove her kidney. Still bloody painful let me tell you.

My Sister is doing so well, she started running again, she said she has so much energy she’s climbing the walls! Her kidney function is returning to normal and she just looks so well. I’m so pleased. And I’m so very proud of her. She’s just the most amazing person I know. She truly is my Hero and a legend in her own right. I owe her everything, and to God for directing our steps every part of the way, getting us to the right hospital and right Drs by closing all the doors that were none of our business. We are so thankful to Him and my Sister and her hubby for walking this long and tedious journey with us. We are so thankful to her husband for consenting to the donation, he could at any time refuse and said no he’s not happy or comfortable with the risks, but he didn’t, and that we noticed with so much love in our hearts. It has been truly amazing not having to dialyse every day. I hated dialysis, even though it was at night on a machine with hardly any effort, it really is no way to live. My Husband and Sister absolutely hated seeing me hooked up to that machine every single night.

My Sister has 2 amazing super duper kidneys, and I got one of them! She warned me that her kidney would keep me busy, and boy is it keeping me busy! She was not kidding! I can’t drive anywhere then I have to go to the loo, it’s quite something. I go the loo so often during the day, it’s awesome! I used to wee twice a day, once in the morning and once before bed, but like 5mls, not a drop more. Now it’s liters and liters!! Astounding really. My kidney function is just awesome, my creatinine is 92, my filtration rate is 69, it’s amazing to see those numbers on paper and not 2 for my filtration and 1800 for my creatinine!!!! It’s so exciting for me, I enjoy every minute of my new found freedom. I smile when my bladder gets full, and it gets full fast and often! So I’m always smiling!

It has been quite a head bender for me to know I have my Sister’s kidney in my body and it’s working just beautifully. I keep calling it her kidney and she keeps telling me it’s not hers it’s mine. But it’s difficult, it is slowly sinking in that it is mine now, but it will always feel like hers, and that’s just how I want it to be, we share an organ now, I have one of her insides in me, and that in itself is a miracle. People often talk about miracles, but this truly is a miracle, against all the odds, we got our transplant, after we really thought that it was never going to happen. We are so truly thankful.

Tomorrow I will post some pictures of us in hospital, and what we got up to together in hospital.

“For I know the plans I have for you, declares the Lord, plans for Hope and a Future. Jer 29:11