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



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


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


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


Family and renal disease.

Any disease I suppose places a lot added stress on your close family. There are a lot of things to contend with. I think the overriding sense from family is helplessness. There really isn’t anything anyone can do to help. They can give emotional support and fetch and carry medication or whatever you need. But that’s where it ends. That kind of help is no doubt very valuable, but one always feels like one wants to do more.  I used to be the one on the sidelines of my Sister’s infertility journey, I so wished there was something I could do, but there wasn’t. All one can do is cheer the person on and give support where needed, and hope for the best.

During my sickest times, Pete could fetch and carry things for me, but there was nothing he could do to make me feel better. I really thought life on dialysis was going to be THAT awful all the time! Luckily my Nephrologist realised my solution was too strong and lower my dosage. Landing up in ICU is not my idea of a good day! Things have stabilsed for me now. I’m not dizzy anymore, my blood pressure is finally normal. It used to be so low I couldn’t stand up.

Although I really still hate dialysis, it’s so much better for me than getting up at 4:30 in the mornings to get ready for the 6:00 am shift. And then to deal with grumpy staff and noisy machines. I used to get severe tachycardia (racing heartbeat) on those damn machines, and my blood pressure inevitably dropped too low time and time again. It was such a relief to get off heamo. I don’t think I could have done that for much longer.

One of our fellow patients died right there in his heamo bed one day. Heart attack. Boom he was gone. Shocked us all quite a bit. Then a few weeks later another fellow patient almost died. He lost conciousness and his breathing was very erratic, all the staff jumped around trying to revive him. Thankfully they were successful. But gave us all a huge fright again.

It just goes to show how fragile our bodies really are. When I told Pete and my Sister what happened they were really unhappy about that. Both of them felt I needed to get off heamo as soon as possible. Which I did. Doing PD is much easier on a person’s body, it’s not nearly as taxing as heamo. I would really recommend renal failure patients to try PD before just going for heamo dialysis.

When my Sister and her husband comes over for a braai or to watch the rugby and it starts getting late, I just attach myself to my ball and chain (PD machine) and carry on chatting. It’s not a big deal anymore, my mobility is a bit hampered, but because it’s on a trolley I’m really not stuck. I wheel it around everywhere.

I know my family and my dear friends cannot wait to see me free from this prison, and their support and love and kindness means so much more to me than any words can describe. Pete is my anchor, he is the most patient and helpful husband, I am truly blessed to have him. I would not want to do this without Pete and my family and my dearest friends. Without their love and support I would not be this happy during this stage of my life. I am so thankful that God put them on my path.

My friends and family are my support system. They tell me what I need to hear, not what I want to hear and they are there for me in the good and bad times. Without them I have no idea where I would be and I know that their love for me is what’s keeping my head above the water.
Kelly Clarkson


Blue Wednesday.

I woke up yesterday feeling very depressed. I’m not a depressed type of person, I almost never feel depressed. But I found with dialysis it creeps up on a person. The fact that I didn’t sleep a wink the night before is also a factor. I’m so tired of insomnia, no pun intended. And then later in the day I burst a vein in my already bloodshot left eye. It’s really painful. And to top it all I had the mother of all headaches. It wouldn’t go away no matter how many painkillers I took. I eventually had to go to bed headache and all. It’s still there.

I ended up having a chat to a friend of mine at around midnight. She’s going through a rough time. I was just reminded last night that I’m not alone. It might feel like that sometimes. I’m sure it does for everyone at some point.

And this morning I woke up feeling nauseaus. That’s never good. Maybe a tall glass of Creme Soda will do the trick.

Pete was a bit worried yesterday, he phoned to make sure I was still ok. I just  had such a blue day.

I’m so sick of looking at my APD machine, and when the time came to start the whole thing up last night I really didn’t want to dialyse. I just wish I can skip a week of dialysis. It would be so wonderful. To just live. No opening bags and shit, connecting to a machine. So nice. I can’t imagine what that was like. Machineless.

I seriously wanted to just give up yesterday. I have spoken to Pete about giving up before, he does understand and will do what I want but not without a good fight at least. I don’t often have days like yesterday, but they are there. I so want to give up, I really do.

I’m just hanging for October, and will decide what to do after that. But for the time being I will push through and wait. And carry on hoping. Hoping that everything will somehow work out for the good. Hoping that this fight will end somehow.

Being defeated is often a temporary condition. Giving up is what makes it permanent. 
Marilyn vos Savant


The downfalls of dialysis.

Apart from the obvious, my ball and chain, there are some really awful drawbacks to the whole renal failure/dialysis deal. For one, I have terribly red eyes. I’m sure people look at me an think I’m a serious pothead. It used to phase me, now, not so much. My eyes are also ver dry and scratchy. So now I use Optive drops on a daily basis to alleviate the scratchiness.

Joint pain is another drawback. Now I know joint pain is directly related to too much phosphates and calcium in the blood. And those chemicals are directly related to diet. Which is in turn another drawback. My diet is so restricted, can’t eat a boatload of different foods. Really irritating actually. Like chocolate, although I’m not a huge chocolate fan, I do want it sometimes. And I must admit, I do cheat. Probably more than I should, but there you go. So I have painful joints sometimes, not always though, the pain is never worth it. But even though there these major drawbacks, I look back at where I came from. Anorexic, bruised, nausea, listless and just plain ill. And I look at myself now and I am amazed. I actually survived. Not everyone does. I am blessed.

My first week on dialysis. Cheesy smile is optional!

I was yellow! I can’t believe it when I look at this photo. This was my first week on heamodialysis. I was still battling with nausea here, but it got better every week.  I did heamo 3x a week. Monday, Wednesday, Friday. Some people go Tuesday, Thursday, Saturday. The first shift is 6:00 in the morning. I did the first shif, I just wanted to get dialysis over with so that I could finish at 10:00 get home and crash. The next shift is 11:00 and the last shift started at 16:00. I cannot imagine having to work all day then dialyse in the afternoon. That must be tough.

I used to take a bag into hospital with me. It contained something to drink, a snack, earplugs, a blanket and a book. It was a very long 4 hours every other day. And I got through my days by reading books. I got through quite a few books doing heamodialysis. I loved reading. Most people slept. I find it hard to sleep in the evenings, sleeping during the day? Not gonna happen. We had a particularly irritating patient who used to speak at the top of his voice for 4 hours. Non stop. My Sister eventually gave me earplugs to drown this individual out.

I’m so glad I don’t do heamo anymore. I am so much happier on peritoneal dialysis.

Not yellow anymore!

If I look at myself now, and compare the photos, I can’t believe how much better I feel.

Me on the heamodialysis machine. I can be so cheesy!

This was my life, 3 times a week for 4 hours. I absolutely hated dialysis, nothing got me down more than this. It felt like such a waste of time. I know it isn’t a waste of time, it saved my life, but I hated it.

a shot of the dialysis unit, with my favourite staff member Kedi.

We weren’t allowed to show their faces, not sure why. But I loved Kedi, she was amazing.

A better view of the dialysis unit.

An close-up picture of my artificial kidney.

This was the artifcial kidney that was used. It acts as a filter for the blood that was filtering through.

My permcath. (permanent catheter)

A permcath is a long pipe with 2 ports that plug into your heart. I do have a fistula, but because I wasn’t going to do heamodialysis for years I refused to use my fistula, I’m so pissed off that I have one to begin with. It’s a major pain in the ass. My percath gave me absolutely no trouble. The nurses kept trying to force me to use my fistula. But they were met by a brick wall. I was not going to budge.

My fistula.

My fistula is in my left arm. Right in the bend. The vascular surgeon took an artery and a vein and did something with it. Not really sure what. But it causes a bubble of sorts. It purrs like a cat 24/7. It’s so loud at night it wakes me up. And I can feel it. It’s quite gross if you touch it. I’m not allowed to carry heavy packets in my left hand. I have to look after it really well, because if it pops, I am in very big trouble.

My body has been through a lot. Dialysis is very hard on a body. It’s a bit like chemo. My hair started to fall out during heamo, the same happened to me during chemo. My blood pressure was always low during heamo, same with chemo. I struggled with nausea during heamo, and definitely struggled with nausea during chemo. It was a very difficult time for me. And my body has been changed and damaged with all the surgeries and procedures I’ve had. I look forward to owning my body again.

I found this blog: http://www.DevonTexas.wordpress.com I found his blog very informative about dialysis. Interesting read.

Determination, patience and courage are the only things needed to improve any situation.