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


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



Heamo vs peritoneal dialysis.

Someone asked me the other day why I preferred peritoneal dialysis to heamo dialysis. It’s simple really. First of all I really don’t have to worry about fluid overload. I drink how ever much I want and I don’t over load. I don’t even measure what I drink at all, it’s so easy. I drink when I want to, how much I want to. And in summer, it’s needed let me tell you. Gone are the days where I can only drink a small amount of fluid at a time because I would overload and then when I get attached to the heamo dialysis machine 3 litres of fluid needed to get drained out of me. I used to measure every drop I drank, because it had a huge impact on my fluid overload. My blood pressure doesn’t dip as radically as it used to on heamo. I don’t feel like like crap anymore. I used to come home and feel so tired and ill. Now I don’t.  I don’t have a permcath in my chest anymore. I am home. That’s the biggest thing for me. I don’t have to go anywhere and have irratable staff faff over me when they clearly have somewhere else to be. I sleep through most of my dialysis because I dialyse at night. And if I go out and come home late I skip a session. I can do that because I dialyse every night.

Peritoneal dialysis isn’t as hard on my body as heamo was. That was tough. I’m actually having a much easier time of it now that I’m doing PD at home.  It’s a better therapy. My diet isn;t as restrictive as it was on heamo. So it’s an all round better and easier therapy. I wouldn’t go back to heamo even you paid me.

The biggest issue for me was that fistula. I never used mine. In the 8 months I did heamo I used my permcath. When I saw how a fistula deforms a patient’s arm I refused to use mine. It’s not vanity. As renal patients our bodies go through hell. I have a scar where my kidney was removed. I gained weight on peritoneal dialysis. Because it’s a glucose solution it’s like drinking 10 litres of sugary drinks a day. So I have to live with that. I was not going to have my arm deformed also. I want to have my fistula blocked or fixed or whatever the Drs do to make it go away. So I will be looking into that in the new year.

So that’s why I prefer PD to heamo. It’s simple really.

“Never under any circumstances take a sleeping pill and a laxative on the same night.” 
― Dave Barry

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There is more to life.

There is more to life than just dialysis. I try as far as I can to not allow my current state of health to overwhelm me or take over my life.  I can’t be all about dialysis and renal failure all the time. Yes, we have to be informative and educate, but life is about more than just that. Disease has a sneaky habit of defining one’s life, and I have to constantly battle against that, I cannot and will not allow it to define me whatsoever. We have really tried to create a normal environment for the boys. We don’t want renal failure to be the focus in our home.

Pete and I were discussing how the boys have coped with everything that’s happened to us the past 2 years, and we are so proud of our boys. They are coping really well. They are such amazing boys, and I believe they are even stronger for it. They cope very well when things don’t go according to plan. Unless it’s internet related, then we have total meltdowns! It’s really funny actually. Priorities, I tell ya!

It’s not the easiest way to go on holiday. But we did it. Very succesfully too! The next thing we need to try is flying with the machine. That ought to be an experience and a half! Not really looking forward to that. Will avoid that for a while.

For now we are just carrying on regardless, dare I say not rewardless. So all in all it’s not too bad. The only major downside is that we don’t go out at night too often. Because I dialyse for 12 hours, I start at 6 in the evening. But when we do need to go out for a function, I just skip that dialysis for that day, or night  actually and just carry on he next evening. I don’t do it often, but I do if I have to.

Would love to stop dialysing all together, but that won’t be such a good idea. I have met people who are all about their disease and therapy. Life revolves around that, all the time. I don’t understand that. Surely there is more to life than what is happening to you right now? I really struggle to relate to people who can only talk dialysis or renal failure. Although this is a major part of my life, I cannot just be that. I actually don’t talk about it to people anymore. It’s boring and I’m wholly disinterrested in all things pertaining to dialysis. I find my friends and I discuss other things, we really don’t talk about this anymore. We have said all there is to say about it and have moved on.

There are too many more interesting topics to discuss. And soon I will have lots to talk about!

“Dream what you want to dream. Go where you want to go. Be what you want to be. Because you have only one life and one chance to do all the things you want to do.”


Dialysis Daze.

I haven’t been here in a while. It’s been so busy with my Sister-in-law and family from New Zealand. We had such a good time with them. We spent an enormous amount of time with them and had a blast shopping for prezzies for them and the children. We also went away on a little holiday with them. The boys were such amazing cousins to their children, they had an absolute blast!

We took them to the Cheetah sanctuary, where we saw some amazing Cheetahs and could stroke a big Cheetah named Byron. He was just sooo cute! We all had a blast touching Byron and watching him enjoying all the attention. So it’s been very very busy! Then we went away on holiday for a bit of rest and relaxation, that was just amazing to get away and be surrounded by nature. We went on long walks, lasting up to 2 and a half hours each day, it was quite something to walk and walk and just have nature surrounding you. I will post photos of all our goings on in the week.

So it’s back to reality for me and the routine of dialysis.

I have been doing Peritoneal Dialysis since February this year. And after a few months of finding the right solution that doesn’t dehydrate me, I have finally been very stable for a number of months on PD. It’s been so easy I actually don’t even feel like I’m dialysing. Don’t get me wrong, I still hate it, but it doesn’t have any noteworthy side effects. Some days I just don’t drink enough fluids which causes dehydration the next day, but I do try and drink as much as I should. And being summer now it will be much easier to get all my fluids in because of this heat. I’m looking forward to that, because last summer I was doing heamo dialysis and I was allowed only a  small amount of fluid, it was very difficult drinking so little in excessive heat. But with PD it’s the total opposite. I’m really looking forward to drink whatever I feel like in this heat.

I also found myself a new GP. I saw her in October for the first time. My old GP was a bit nervous having me as a patient, not sure why, she didn’t want to make a move without phoning my Nephrologist fiirst. But the new GP is so cool! She isnt’ scared to prescribe meds, and she knows a lot about kidneys. It’s a breath of fresh air to have a GP that’s not afraid to touch you! And she doesn’t over prescribe anti-biotics either. She said if my cold doesn’t clear up with the meds she prescribed in a week then she will give me anti-biotics. And I didn’t need it anyway, I got over it all by myself. (with the help of the meds she gave me off course) I just didn’t want to be sick on holiday.

So life goes on, we are pretty busy the next few weekends with A LOT of socials coming up! A 16th birthday, a 40th, a 50th (nope we are not that old, hahahahaha) a baby shower and a Christening! And in between we have to see our friends, they are going through a hectic time, our thoughts and prayers are always with them.

“You’re either busy working and moving forward, or being dramatic. There’s no time for both”

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So it finally happened.

Ok, So I got peritonitis. The dreaded infection that strikes fear in the heart of every PD patient. It is our worst nightmare. It lands us in ICU fighting for our lives. It’s a very scary infection. It is fatal in some cases.

I woke up last Wednesday morning and my dialysis fluid was murky. So we rush over to the hospital with a sample to be tested and I was finally forced to start taking my anti-biotics. Both of them. I has some stomach ache on Wednesday and Thursday. But that’s it really. I had no other symptoms. What a total yawn fest! I didn’t feel ill at all.  The nurses from the PD dept at the hospital kept phoning me daily in a mad panic to monitor me. The conversation would go like this.

PD dept:  “Hello Mrs. Harrison, this is Melita from PD. How are you feeling today? (asked very tentatively, like I’m about to break)

Me: “Hi Melita! I’m really well, how are you today?” (very chipper as always)

PD dept: “Um, Mrs. Harrison how is the pain and the infection? (total confusion that I’m not sounding like I’m dying)

Me: “Oh that! Yes. I’m feeling really well, taking the anti-biotics everyday!” (chipper)

PD dept: “O-ok. Well……………..if you need anything just phone us hey.” (more of a question than a statement really, still very confused)

I think they really expected me to be very ill. I got a call from the nurse who does the blood work. She told me on Friday that I have quite a bad infection, asked how I felt, I told her what I told Melita. I’m absolutey dead sure she thought I was putting on an act. But really, I wasn’t. The medication makes me feel worse than anything. It’s awful stuff. I have been very bad with taking it, I take one, then forget a day then I remember. Really bad on my part. I better get my butt into gear and start getting serious with these meds.

But really, I was told peritonitis is very bad, I would land in ICU and it can be fatal. And apparantly my infection was very bad. I had a very high leucocyte count. Hence all the worried phone calls. I found it a total bore really. The meds make me feel dizzy and drop my blood pressure. Which make me feel really pissed off. If there is one thing I hate, it’s feeling dizzy. So I can’t wait for the course to be finished. Then life can carry on as usual.

The only thing that should surprise us is that there are still some things that can surprise us. 
Francois de la Rochefoucauld 


Forgetting to dialyse!

Ok, so for the past two nights I have been forgetting to prime my dialysis machine. I get all comfy on the sofa, or I’m quite busy in the kitchen cooking. Then it dawns on me. I gotta prime that damn machine. It used to be such a part of my evening routine, I’d open the bags, get the cassette out, attach everything, load the cassette and prime. Then when the bags are nice and warm, I attach myself and dialyse. But these days it’s the furthest thing from my mind. It’s as though I’m doing something I don’t really have to do. Freaky actually. Maybe it’s because it’s all so tedious. Maybe.

Anyway, Pete has persuaded me to start my meds. Ugh. I REALLY don’t want to! Really really. So I’m starting tomorrow. Didn’t want to start just yet. There’s nothing like putting it off for one more day is there? So tomorrow the work starts. Pete injects it into my line (he likes doing it, and I really don’t so it works well) then for 6 hours I have to walk around with 2 litres of fluid in my belly, then after said 6 hours I have to hand dialyse (drain the fluid) and put 500ml in my belly. Which is what I’m used to. I’m SO not looking forward to 15 days of that crap, but alas, I have no choice.

Renal failure sucks.

“Listen to the people who love you. Believe that they are worth living for even when you don’t believe it. Seek out the memories depression takes away and project them into the future. Be brave; be strong; take your pills. Exercise because it’s good for you even if every step weighs a thousand pounds. Eat when food itself disgusts you. Reason with yourself when you have lost your reason.” 
― Andrew Soloman


Dialysis machine fail.

Sometimes my trusty ball and chain fails. Yep, just like that something goes wrong. Either the cassette (the thing with all the pipes that plugs into the pump) is faulty and the machine screams until I press the stop button, or the pump door won’t open, or some thing or another doesn’t comply. Nothing, and I mean nothing gets me more pissed off when that happens. It’s enough that I have to contend with the daily grind of dialysis, I don’t also want to deal with a bothersome shitty machine.

Like when the bloody cassette fails and water gushes out all over the floor. And this is no ordinary water, no it’s a glucose solution. And let me tell you, that’s some sticky shit right there! I get so hacked off. Nothing makes me swear more than when there is sticky crap all over the floor, and bloody masses of it too!!

It’s very difficult to see the silver lining when that happens. If things can just work the way they are supposed to, our lives will all be just that much better. Anyway, after a deep breath, the mess got cleaned up and life went on.

Some days I’m just so sick of it all.

“True, if you fight, there is always a chance you might lose. But if you do not fight, you can never win.” 
― Taylor E Bennet.