Effervesce.

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


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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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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.”


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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


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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


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Its been a while, but trust me, A LOT has happened!

Ok, so I’ve been absent from my blog for 2 years. In my defence, my world kinda came crashing down. Several times. I thought 2009 was a rough year, sorry to hash this all up Sis, but its where my story starts, I have to start at the beginning, OCD and all that, you understand!

So in 2009 in April the 4th to be exact, my Sister who was pregnant at the time, went for a routine scan and the Dr found her little girl had died. Its hard for me to write this and not get emotional and teary, it still hurts.  Our world came crashing down. I had to watch my Sister suffer. Again. For the 4th time. And also the final time.  Her recovery from that was hard, very hard, nobody, and I mean nobody knew exactly how hard it was for her. I did, I heard, I knew. And off course her sweet sweet loving and ever supportive husband. I could do nothing. I felt and was helpless. All I could do was stand by and watch. No words.

But my Sister recovered. She grew into this amazingly strong and grounded person. I stood in awe as I saw her emerge from this painful horror story. She taught me so much. She is a happy well rounded person who isnt looking for that one thing to make her happy. And that, is amazing.

I didnt know how much I learnt from her and how much I would use these lessons until a year later. I was feeling ill, very ill, nausea stomach ache, tired, very very tired. I went to my GP, she diagnosed Collitis. Inflammation of the colon. She prescribed a heavy dose of antibiotics. I got worse. I went back and she gave me another dose of anti biotics. I got worse. At that time my husband told me to make an appointment with my Nephrologist. Now this is after my Sister had been on at me to go see him too, always asking me if it was not my kidney. I always said “Nah man! Dont worry, its not that!” Can you say DENIAL?

I went to see him, after I did the regular UK and E tests with 24 hour protein and createnine clearance tests. He took my blood pressure which was very high, a sure sign something is up. He took one look at my createnine clearance and said “Amanda your createnine levels are at 1400.” Which means renal failure. My kidney function was all of 4%. I really thought he was joking! He always jokes around with me! But apart from nausea only in the evenings I felt fine! So my world came crashing down once more!

We decided to go on holiday as a family. I wanted to have normal before I started dialysis, just one more time. It was a great holiday, but also a bad one for so many reasons. I also got really ill after that holiday. When I started dialysis my createnine levels were at 2700. The Dr could actually not believe I was still alive! And my heamoglobin was 4. He told my husband that not many people would be alive with heamoglobin that low. So I know ‘Im stronger than I think.

I started heamo dialysis in July 2011. I had a permcath (permanent catheter) in my chest, and a ripening fistula in my left arm. I used my permcath for 9 months, because I absolutely refused to use my fistula after I saw what happened to people’s arms after a while. Its awful, its hideous and very painful in the beginning. So amid a furore of nurses and drs telling me I HAVE to use the fistula, I said, “Nope” and stuck to my guns for 9 months. I am now doing peritoneal dyalisis. And I far prefer it to HD. My Sister was with me when I had the PD op done. I think she is still traumatised and probably in need of therapy which I will pay for! (chuckles silently) What and AWFUL op! I shall leave it there.

For 7 month my Sister and I did tests to see if she could be my donor. And she was! She is in perfect health and a great genetic match. We got our transplant date for the 30th of March 2012. We were extatatic! My Sister doesnt have children and she thought her destiny in life was to be my donor. At first I didnt want to hear her, but as the tests became clearer and we went further I saw that maybe she was right. And then, 6 weeks before our transplant surgery, my Dr pulled the plug. My world came crashing down again. My Sister and I were devestated. My Husband and my 2 sweet boys were devestated! Everyone we knew were devestated. My best friend heard through my sobs of the devestating news.  My Mom was devestated. It was awful.

But let me tell you, all these devestated people carried me through this. That was wonderful. Nobody gave me stupid platitudes, nobody said stupid things like “Its for the best” they just carried me through it.  And still are. I am truly blessed by the number of people who are just there for me. I gained a lot after I lost it all.

Not so long ago I told Pete I don’t want to be a slave to renal failure. I cant just wait for some random person to die to provide me with a life. And I hate being on the national donor list. But here I am. Because of the nature of the disease I was diagnosed with, a live donor is not feasable. But neither is a deceased donor. So my Sister, being the amazing person she is. Digs. And she dug until she found something. I’m seeing a Dr in October this year and I will say more about it when the time comes, suffice to say it looks hopeful, more hopeful than it ever looked. Im so excited for this appointment and really cant believe I have to wait so long, but I have no choice.

In the meantime, I will dialyse with my APD machine, and bide my time until then.

I have recently started drinking wine again, and I developed a taste for Bacardi Breezer Pineapple flavour, and I’m enjoying my life again. My boys are now teenagers and that keeps me on my toes!

You gain strength, courage and confidence by every experience by which you really stop and look fear in the face. You are able to say to yourself,  “I have lived through this horror. I can take the next thing that comes along.” You must do the thing you think you cannot do.


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Update.

 

Our newest member Maddox was neutered last Friday, he bounced back very quickly! He was a sleepy boy on Friday afternoon, and by Saturday he was jumping off the walls! Cassey, my ice princess, decided last night that she might afterall maybe at a push play with the boy, so the two of them ran around like mad here. But she gets tired of him quickly, and being a boy he gets right in her face and then she hisses and growls. But it does look like the two of them will become great friends soon.

Maddox is such an awsome cat, he has a wonderful personality and has Pete wrapped around his little finger. He doesn’t allow Cassey in his cupboard, but he allowed Maddox there this morning. Allowing him to explore at will and for as long as he wanted to! Go figure! He has turned this house upside down, not because he’a a handful, but because he is loved so much. We give Cassey more love and attention, because she seems a bit jealous, so she gets carried around and kissed and fussed over, but so does Maddox, so it makes for interesting life at the moment!