Effervesce.

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


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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


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Hoax

Ok, so remember when I said I’m seeing this amazing new Dr in October? Way back in August? He was the front runner in stem cell therapy and he’s helped many renal patients. Turns out it was a hoax. They want you to pay upfront and then you get nothing. Luckily Pete and I become very suspicious when someone wants money upfront. My Sister went and researched some more and it transpired to be a hoax. Some people have paid as much as R100k and got given saline solution. Can you believe there are people out there who take advantage of sick and dying people? There must be a special place in hell for people like that.

There are clinics who are doing stem cell therapy, it’s mostly for other organs, kidneys not so much. In Europe they are a bit more advanced with the whole stem cell thing. So there is lots of information out there and it’s easy to fabricate some info. My best advice is to double check if it’s a new therapy and never pay anything upfront.

Anyway, lucky for us we found out early on that it was a total hoax. But others weren’t that lucky, I really feel for them.

“The problem is not the problem. The problem is your attitude about the problem. Do you understand? -Captain Jack Sparrow.


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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 


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It’s just my journey.

This blog about me and my journey. It will contain some information about renal disease, renal failure and dialysis. But it’s predominantly about my own journey from kidney disease to renal failure and dialysis. It’s a chronicle about my life and how it’s panning out. So it’s not really heavy on information.

But while I’m on the subject of information, I have noticed that dialysis dries my skin and nails out quite badly. I drink a handful of vitamins every single day, because the dialysis solution takes all the toxins and nutrients out of my body. So I have to replace them daily. I lost the war on my nails. They were so dry and brittle and nothing I did seemed to help. So last year I had a set of falsies put on. I go to Dream nails and they do my nails for me. So I don’t have to think about that anymore.

I’m going to have Dermabrasion done at Placecol, because I have pigmentation on my forehead and I’m so tired of looking at that now. I had a chat to the lady today and she said that I should also have a peel once a month after a few sessions of the dermabrasion. I’m not really looking forward to that. But I suppose I have to do what I need to to not look like I’ve been in the wars.

So although my body it taking a beating I have some great excuses to go for pampering more often than I would need to if everything was working well. So I will forge ahead with all of that.

I do have one terrible pain in my neck that just won’t go away. Not too sure about that. Will have to ask the Dr when I see him in October.

My Sister-in-law and family will arrive tomorrow morning from New Zealand. We are really looking forward to seeing them this holiday. We have so much lined up for them and the kids. I’m just not looking forward to seeing a certain someone at one of the family get togethers. I’m not a fan of TPT.

“I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.” – Henry David Thoreau


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I get high with a little help………..

When you have renal failure you don’t sleep very well. I have not slept well for a year now. My Nephrologist prescribed 20mg of Trepiline. So for about 6 months I have been taking Trepiline. But I noticed that the effects don’t last. So I started taking it with one Syndol before bed, then after a while two Syndols before bed. This could not go on. I’m not really allowed to take Syndol. You know, because of no kidney function. Yay me! Anyway, I then decided to go for sleeping pills. I’ve been putting of using the sleeping pills because I really didn’t want to get dependent on them. It’s such a pain weaning off them. A very S.L.O.W. process. But I succumbed.

So now I take sleeping pills, which work really well. Until they don’t. Like last night and the night before. I drink the pill and patiently wait to get sleepy. Only, I don’t get sleepy, I get high. Great stuff! In the beginning. Not so great after an hour of feeling really drunk. It does get a bit tedious. So now I either push through. Getting high every evening. Not the worst idea I’ve had. Or I change meds. Not really up for that. Getting hold of my Dr is a royal pain in the arse! I do have his cel nr and I do sms him or occasionally phone him, and he’s very sweet and always does what I ask him. But I feel bad. And his receptionist is not a total bitch, lets just say, she would rather not. Anything. At all. Ever.

So now I weigh up my options. I might just stick with my current pills. At least I have a short party in my head before I conk out. And that’s not all that bad. As long as it doesn’t go on and on I think I shall cope. And enjoy. it’s not everyday one gets high with a little help on Drs orders.

I will lift mine eyes unto the pills.  Almost everyone takes them, from the humble aspirin to the multi-coloured, king-sized three deckers, which put you to sleep, wake you up, stimulate and soothe you all in one.  It is an age of pills.  ~Malcolm Muggeridge, 1962


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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