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


Time flies when you’re having fun.

We just celebrated our 5th month post transplant. It has been quite a busy time. I have been doing yoga or cardio on a daily basis. Loving it, must just say. Having the energy to do that has just been totally amazing.  But as much as I have enjoyed my new found freedom, I have had some difficulty. I got a cold for 3 weeks after the transplant, then no sooner that cleared I got a nasty chest infection. I put it down to my body getting used to the immune suppression, so I really didn’t get too bothered about that. I knew it would get sorted out at some point. But I also got a very bad shingles virus. Like seriously bad, twice. I was n a world of pain, had loads of blisters and the nerve pain was just too awful, I was in so much pain. I was put on Lyrica twice a day for the nerve pain, thank heavens that drug exitst, otherwise I would be in a mental institution now, the pain drove me slightly crazy, so I can’t imagine having no meds to at least dull the pain.

Anyway, that cleared up after 8 long soul destroying weeks. Then just as I think the end is in sight, I hurt something somewhere with jumping jacks. I have a severe pins and needle pain shooting down my right leg. I’m going for physio now, and hopefully that gets sorted out quickly. I’m seeing the physio therapist again tomorrow. But I’m not complaining too much, because, although I am adjusting to lifelong medication, I am still so happy and relieved to be where I am now. I have learnt through all the things we go through in life that we always having something to be grateful for. And I am very grateful. I have lots of fun and will continue like that while adjusting to my new life.

We went to Durban in August this year, the boys had a holiday and we wanted to do something fun. And since we could travel sans the old ball and chain (PD machine) we decided why the hell not! So off we went. And it was great fun!  It was so good to go out at night and not rush back to dialyse. I loved that most of all. Pete and the boys jumped off the Moses Mabida stadium, highest jump in Africa. They loved it! I did my jump when I was much younger, have the certificate to prove it!

Pete and Tim at Ushaka beach having a swim.

Pete and Tim at Ushaka beach having a swim.

The big shark jaw at the entrance. yes I am that person!

The big shark jaw at the entrance. Yes I am that person!

Pete and the boys ready to jump.

Pete and the boys ready to jump.

My 2 gorgeous boys!

My 2 gorgeous boys!

The roof of the stadium, it'd magnificent!

The roof of the stadium, it’s magnificent!

The stadium.

The stadium.

The 3 boys just after the jump!

The 3 boys just after the jump!

We really had such a good holiday. We also caught up with Pete’s cousin and had dinner with them. And had breakfast with one of Pete’s friends who now lives in Durban.

Then my Sister and I went to Dullstroom last weekend. What a blast that was! We decided to go clay pigeon shooting! We LOVED it! I now see why boys are so gun mad. It’s heaps of fun!

Lunch at the Mayfly! Also, they had wi-fi!

Lunch at the Mayfly!
Also, they had wi-fi!

We had Hunter's dry! I had to skip my blood test on Monday for this! lol!

We had Hunter’s dry! I had to skip my blood test on Monday for this! lol!

Hells yeah!! Bad ass chicks!

Hells yeah!! Bad ass chicks!

That gun was heavy! But such fun!

That gun was heavy! But such fun!

My Sister went first. I was was a bit chicken hahahaha!

My Sister went first. I was was a bit chicken hahahaha!

Will definitely do this again!

Will definitely do this again!

So all in all I am having a blast with my new found freedom! My Sister is doing so well, she’s back at Bootcamp, I take my hat off to her, that’s not easy. She has to be up at 4:30 every morning. I could not do that! But she loves it. We made a decision to “kidney bump” every now and then just because we can!!! I still marvel at what we have come through and how well we are doing. I still smile broadly when it’s all quiet and I have to go to the loo. It’s still such an amazing feeling I have.

Life is not about how fast you run or how high you climb, but how well you bounce.” 

“I promise you I’m up to no good!” -Unknown


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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


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


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


When I was 19…………………….

I woke up one one morning and I couldn’t get my feet into my shoes. I squeezed  them in. A few minutes later I took my shoes off. It was too painful to keep them on.  I gave it an hour and tried again. Irritated I showed my Mom, she would know how to get swollen feet down I was sure of it. She gave my feet one look and immediatly dragged me to the Dr. I obviously rolled my eyes at her apparant overreaction. Being 19 I thought she could be such a bloody drama queen. But she knew something was wrong.

The Dr took 4 vials of blood and was very worried. I off course thought all these silly adults just need drama in their lives!  I saw the Doc at 9:00 and at 13:00 he phoned me and told me he booked me into hospital. OMG! Really now???????? I was so irritated that he overreacted so much I point blank refused to go. Then he said there might be something wrong with my kidneys. Ok, I thought that might be something, BUT, cant I just get some meds and go on my merry way?  Nope, hospital it is.

So off we go, I get booked in and a barrage of tests get done on me. I go for scans, x-rays, CT scans, blood tests and more blood tests, and if I thought that was a lot, more blood tests! It transpired that I had a lot of protein in my urine. Which indicated some sort of nephrotic syndrome. I saw a Nephrologist and he eventually did a biopsy on my right kidney.

I saw the needle he was going to use, and freaked out just slightly. He told me not to worry, complications are rare, about 1 in a million kidneys bleed after a biopsy. I was that one. I thought I was going to die from pain. I remember getting up for a pee a few hours after the biopsy and just fainted from pain. It was very bloody painful.

Anyway, after the Dr told me he has personally never had a kidney bleed after a biopsy and that I was his first patient to do so, thank you very much. He told me I had FSGS Focal and Segmental Glomeruli Schlerosis. GULP! Say what now? Yes, and so my journey with FSGS a progressive and incurable kidney disease starts.

I was told that I would eventually go into renal failure, but that’s long term, I shouldn’t worry about that. He also told my Sister that she would be a great match as a donor one day. My head spun. The Drs were throwing around words like ‘transplant‘ and ‘donor‘ and ‘life long medication‘. I was only 19 and it felt like my life was over.

But it wasnt. I went on and got married and had 2 gorgeous boys. I had cats and dogs as wonderful pets and lived a normal life. Until the wheels came off. My right kidney had an obstruction and started filling with water. It was not alarmingly big, but the Dr was watching it. About 2 years later it was the size of a watermelon. It was HUGE. My Nephrologist said I needed to have it removed immediatly, it was life threatening, the cortex was less than 1mm thick, if it bursts I would be in serious trouble.So it was removed in May 2006.

To save my remaining kidney he put me on chemo therapy. I will never do that again! Chemo is not for the faint hearted, lemme tell you.  Hell.On.Earth. I was so sick. I thought the nephrectomy (removal of kidney) was difficult and painful and the recovery was very long. But chemo was in a league of its own.

So after chemo I just lived a normal happy life. That lasted all of 3 years when the wheels came off again. This time, full blown renal failure.

So here I am, in renal failure, and waiting. But also living. I am living my life as best I can, I am not going to be a slave to renal failure, I refuse. It got me down, but I got up. With God’s help, the encouragement from my family and friends, I am living, and looking forward to a bright future.

Death is nothing, but to live defeated and inglorious is to die daily.
Napoleon Bonaparte.