Now that I am almost two (yes, two!) years post kidney and pancreas transplant, I cannot believe the path my life has taken since May 2011. In the nine or so years that I became too unwell to “grab life by the horns”, I often spent time lamenting on what could have been – I would never get the opportunity to drive, never have children, never study, never travel and, at one point, was told that I would be lucky to see my 30th birthday,
I’ve always been told that I have a strong resolve and that I never seem to let my health get the better of me. But let me tell you this – some days I was barely able to drag myself from bed at the mere thought of facing another day – of hearing how much someone had travelled had on their holidays, or how another friend was pregnant – things that crushed me on the inside as I knew that these things wouldn’t happen for me – those things that most take for granted were just too far out of my reach.
As my health deteriorated, I turned to my friends, family and my (then) fiancé for support and comfort. Some friends disappeared at the first sign of trouble, some stayed, and some people even told me that it was my own fault for not looking after myself prior.
I too question whether I was “worthy” of my new organs. After all, somebody’s passing was what made me able to live – there was no “miracle” which saved me – somebody died. A family had to make one of the hardest decisions at one of the hardest times in their lives – to donate or not to donate? I have wrestled with this thought many a time over the past 2 years and have come to realise that whilst my donor passed away, they let their loved ones know their wishes – their wish was to save somebody like me, who wouldn’t be writing this blog if it weren’t for that wish. That amazing individual had a conversation with their family and discussed with them this wish.
And as the saying goes – the proof is in the pudding – life has taken me to places that I never dreamed of on those days when I wished for another chance. I have been accepted to study at University this year and achieve what I have always desired to do with my life – help others. I am currently in the process of learning to drive – another feat that I had never thought would come to be. I have even managed to start a small macaron-making business and supply yummy treats to friends, family and even a couple of local cafes. I like to think that I don’t let much stop me now – and whilst I spend my time doing the things I love, I also hold dear the memory of someone whom I will never meet, but I owe an incredible debt of gratitude to – someone I owe my life to, and I don’t want to let them down either.
I couldn’t imagine why anyone would not want to be an organ and tissue donor – to have the power to make something incredible happen in a time when all is lost is nothing short of amazing. I have been a registered organ and tissue donor for many years, long before I had the need for donation, and remain one to this day – after all, if you could make someone’s wish for a second chance at life become possible, wouldn’t you?
“Make your wish count. Discover, decide and discuss organ and tissue donation.”
Clinic day again, but an earlier than scheduled visit this month after a nasty week. Monday was erased by bad neuropathy in my legs and the subsequent drug induced daze which follows, and the rest of the week has been eaten up by a throat infection and head cold, complete with high fever - which can be worrying in some people, but especially in transplant patients. After leaving an early morning message with my nephrologist, I headed to work feeling ok, only to be summoned to the hospital for blood tests, an x-ray and to be told to not go anywhere except home for the next few days.
I’ve spent the first part of my ‘house arrest’ feeling pretty bored, and it wasn’t until Russ told me it reminded him of my dialysis days that I had a think about life prior to transplant - just 11 months ago. I spent a lot of time not being able to do much more than watch DVDs and so spent time catching up on my favourite TV shows. You would think that spending so much time in hospital would make me want to avoid anything related to it, but one of my favourite shows was “Scrubs”, and so I have spent the past day and a half re-acquainting myself with an old friend.
A particular episode got me thinking, where the main character talks about his heroes and those who he looks up to. I was recently asked to think about this myself, and I have to say, my heroes don’t wear capes - they usually wear lab coats or everyday clothes. They are there when I call out in need - I feel they go above and beyond by seeing me out of hours and allaying any fears, but they just take it as part of their job. They save lives every day, not with brute force, but with brains. These people are my heroes, and I feel they know this when they see the change they have made in me. They know who they are.
So yesterday was my 29th birhtday - the FIRST one where I’ve actually been able to eat cake (which I didn’t but I COULD!) and got to celebrate with those who matter most - my family and friends.
I clearly remember my last birthday - dialysis, hospital and lamenting a call which I thought would never come. How things have changed!!!
You would think that needing and then going through a transplant would be enough for most people, but not for Brooke Huuskes, who received a kidney from her Dad in 2010. Brooke already had a “bucket list” before her transplant, and is now more determined than ever to tick things off.
So why not climb Mount Kilimanjaro in Tanzania?
Below is Brooke’s recount of her amazing journey…
“I planned my Kilimanjaro climb so that I would reach the summit on my birthday - Christmas Eve. Our group took 3 days to reach our “base camp” which was at 4600m above sea level. We got to sleep for about 5 hours before we were woken up at 10.30pm on the same day, the 23rd of December. We started walking at 11.30pm, and all I wanted to do was sleep. It was cold, it was dark, and I wasn’t walking for long before I started to feel the effects of the altitude for the first time on the trek.
Also, I was slow… like, REALLY SLOW. So it also wasn’t too long before I split off from the rest of the group with my own personal guide, Jumo, who told me when to walk, when to stop, when to eat and when to drink. He was my brain. I don’t know what the oxygen level is at about 5000m, but it wasn’t much. People use different ways to motivate themselves when they face such a huge exhausting challenge, and mine was to “just put one foot in front of the other. If you are not going backwards, you are going forwards, which means that you are getting ever closer to your goal.” I think that’s what I was telling myself anyway, when I was conscious. ALL I WANTED TO DO WAS SLEEP! Although the stars were like I have never seen before, I could see Nairobi in Kenya on one side of the mountain and Arusha in Tanzania on the other, and it was all so amazing watching the trail of headlights weaving their way up to the summit, until I felt dizzy and nauseous from looking around. Then it was back to looking at Jumo’s heels and concentrating on putting one foot in front of the other. I remember thinking that I must have looked like a drunken hunchbacked old man while walking with my walking poles and my clumsy all-over-the-place walking style that I used to get up most of the mountain.
The whole reason the climb to the summit starts so early is so that you can make it to the top for sunrise. Well…. I didn’t get to experience that did I?! I was still maybe 40 minutes from the first peak - Stella Point - when the sun rose. But that was ok. I got to have a break, have a photo, and feel the suns energy recharge me! After this time, I was rationalising with myself about only making it to Stella Point, which is around 200m below Uhuru Peak. I knew that I was way WAY behind the rest of my group at this stage, and that I was exhausted. I also knew that it was ok if I didn’t make it to the highest point in Africa; it was ok that I only made it to Stella Point because at least I had given it a go. At Stella Point, when the rest of my group came down from the peak, I would go back to camp with them.
After almost getting hit by a rock the size of my head, I reached Stella Point! YAHOOIE! I sat on a rock for…30 seconds (or 3 minutes?) The concept of time had disappeared from my brain a long time before reaching this point. After some amount of time, I heard a “BROOKE!!” and my group came running toward me and hugged me and said good job on making it this far. There were 10 of them, so it was a lovely group hug full of tears from me. I told them that I was going to come back down with them and that I was not going to go to Uhuru. They were all extremely upset and said that I HAD to go to the top and that it was only an hour and a half away. They were very much like my family and best friends. I guess you get kinda close to the people that you do such an amazing, challenging thing with.
So, I did what they told me to do. I walked to the peak…kinda. By this stage I had two guides, Tino had joined us. I had lost the walking poles and had Jumo and Tino of either side of me, arms linked. My head was down and my eyes were shut for most of this walk. I JUST WANTED TO SLEEP! And I think I was crying for most of the walk too, I don’t know why, but it stopped after Tino had a good talking to me. He said, “Brooke, don’t cry, it wastes too much energy. Cry as much as you want at the top, but just not now.” He also kept telling me not to go to sleep and was asking me cognitive function test questions like, what day it is, what mountain are we on and who is my guide. I think I got all the questions right!
At the top, I collapsed into Tino’s arms and 3 thoughts ran through my head:
1. I wouldn’t be here without Dad
2. I wouldn’t be here without all the love and support from my family and friends
3. I MADE IT!
Then it was photo time! The photo below is a tad blurry, but it’s the money shot really and will always be special to me. The fluoro green sign replaced the cute little wooden one about 2 months before we got there. It reads:
CONGRATULATIONS
You are now at Uhuru Peak
5985M A.M.S.L
Tanzania
Africa’s Highest Point
World’s Tallest Freestanding Mountain
UNESCO World Heritage Site
I look all puffy in the photo because I had 5 layers of warmth on top and 5 layers on the bottom! It was about -20 degrees on the top. The coldest temperatures I have ever experienced! I reached the summit at 7.30am. So yep, your calculations are correct. I was walking for 8 hours straight.
WORTH IT! :-)
But then, it was 4 hours back down to camp.
Although I was feeling GREAT at that point, as soon as I started to descend I started to feel better. I could walk on my own, with my poles and I could have conversations with Jumo and Tino. It was still hard on the knees, but I made it back to camp! (After falling over and sliding in the sand and having my lips crack 8 times from the sun wind and snow damage they had just endured!)
Everyone in my group had had 2 hours sleep by that stage and were feeling refreshed. As I arrived at camp someone saw me and yelled “BROOKE’S BACK!” Which made everyone stop what they were doing, and come out of their tents, and clap and cheer for me. I cried again.
I was EXHAUSTED, and all I wanted to do was sleep, but just after lunch my group told me that they wanted to walk out of Kilimanjaro National Park that day. It usually takes 2 days. Right, I definitely need to get some sleep.
HOWEVER, my guides and cook had another idea for me. They came into our food tent singing “happy birthday!” They had made me the most wonderful amazing cake ever! At 4600m!! It was too much, too overwhelming….I forgot that I was meant to blow out my birthday candles (and nearly passed out when I finally did!)
After my scrumptious cake, I DID manage to get some sleep - a total of about 4 minutes! Then was the walk down, where I really did cry/whimper for about the last two hours of the walk. Our group started walking at 1pm, and we got out of the National park at 7.30pm. It was excruciating, and the second time that day I had needed my head torch! By the time I went to sleep I had been awake for 24 hours (minus the 4 minutes sleep that I got) and walked for most of that time. Do not EVER try this yourself! If you do attempt climbing Kilimanjaro, I suggest you follow the itinerary and DO NOT attempt to walk from 5895m to sea level in one day. Your knees, hips, back, shoulders, neck and everything else will make sure that you experience pain that you have never experienced before, and it WILL take a LONG time to recover!!
In saying all about how much pain I was in and how climbing Kilimanjaro was one of the hardest things I have ever done, it really was one of the best birthdays I have ever had. I pushed myself physically and mentally that day, and I really am proud of what I achieved!”
Brooke’s bucket list is long, and includes both short and long term goals – simpler things like making her own ANZAC biscuits, to more challenging things, like going scuba diving in Antarctica. It has been amazing knowing Brooke, and she has truly been inspirational – so much so that I have set my own set of things I’d like to do. What about you all? What is on your “bucket list”?
Brooke standing atop the Africa’s highest peak
I have always grown up with the mindset of becoming an organ donor “when I grew up”. Now that I AM grown up, and have received the gift of life, I honestly couldn’t imagine anyone not registering themselves on the Organ Donor Register. I am proud that my husband and close family are on the official register, but it wasn’t until I was placed on the waiting list for a transplant that I realised how it also affected those who are also in my life.
In my “thank you” blog, I spoke of my friend Rebecca. Bec has a 10 year old son, who one day sat Bec down on the couch and told her in a serious tone “I want to be an organ donor, and please don’t override my decision”. No matter what Bec asked of his reasons, he remained firm on his decision. When she told me this, I cried that such a beautiful gesture and serious decision could be made by someone so young. Bec’s son knows me very well, and I’m sure Bec had spoken about me needing a transplant before, and it fills me with so much emotion to know that I had, even in some small way, had helped him come to that amazing choice.
My Grandmother told me that she was travelling with one of my Aunts in her car one afternoon when my Aunty announced that she had registered to be a donor and that she wanted that decision to be upheld if the time came. My Aunty was inspired by my plight and hoped that her decision could one day save someone like myself.
As you can imagine, I have always been a common sight at my local Doctor’s surgery. Over the past 20 years or so that the surgery has been there, many GPs have come and gone, but one of the receptionists has remained, and so she has become quite close to my family and particularly me. A few weeks ago, when I came in for a regular check-up, I noticed Michelle was at the reception desk and had my usual catch-up with her, letting her know how things were going with my transplant and how great my “new” life is. She then told me that I had inspired her to become an organ and tissue donor, as well as a blood donor, because she knew how sick I had been and again, would do anything she could under the circumstances to save someone else’s life.
Three truly amazing stories of people in my life who were affected so much by my experience with donation, it really does amaze me and I’m even getting emotional just thinking about it.
COULD YOU ONE DAY SAVE SOMEONE LIKE ME?
This blog is part of the FilmLife Project’s “Bloggers Challenge”. Please visit www.filmlife.com.au to take part in other fantastic FilmLife projects!
As I prepare for Christmas this year, I think back to my last Christmas – dialysis Christmas Eve and Boxing Day, and spending Christmas Day in bed, simply because I was just too sick to enjoy the day. Sadly this has been the pattern for the past 6 or so Christmases, with varying degrees of illness, or in the case of 2007, not being able to see the tree at my parents place because my vision was so terrible at that point.
To be honest, there were times earlier in the year when my health had deteriorated so much that I wasn’t even certain that I would see this Christmas – I was having more frequent and more severe hypos, and dialysis barely kept me hanging on. I like to think that my condition wasn’t life-threatening, but as I reflect on how sick I was, the reality is that my transplant did indeed save my life.
As lucky as I consider myself to be now – in good health and away from the hospital, my heart goes out to those still on the waiting list, knowing that they can’t visit loved ones who live far away as they wait for that elusive call. I also feel tremendously for my friends at dialysis and a few extra special people whose transplant journey hasn’t been as successful as my own.
My thoughts are with my donor’s family at all times, but especially at this time of year. The gift that they gave could never be matched or outdone, and by far and away is the best gift I will ever receive. Words really cannot express the sheer gratitude I have for the person who still lives on inside me.
All in all, 2010 has been an interesting year for me, and I look forward to seeing what next year brings. I can see how far I’ve come, yet know that my “journey” is nowhere near over.
Merry Christmas.
As I am now on the eve of the six month “birthdays” of Billy (the KID-ney) and Patty (PAN-creas) and I am having a restless night, I thought it would be a good time to reflect on how much of an impact Billy and Patty have made on my life in the past six months.
I am contributing to a “Journey of Hope” book, which will be full of inspirational pre and post-transplant stories, and will be distributed to those waiting on the active transplant list. Each contribution is made up of two parts – one side is by a close friend or family member who documents life prior to transplant – in my case, Russ contributed. On the facing page, the transplant recipient is asked to document life post-transplant – their achievements and aspirations for the future. I could not believe how difficult it was for me to write something! I honestly thought that at six months, I really hadn’t achieved a great deal. It wasn’t until I mentioned this to a friend and she gave me her point of view that I saw how far I’d come.
I used to dialyse four days a week. That means that in the past six months I have NOT dialysed approximately 104 times. That’s 104 days that I’ve been able to regain for myself. In the past three months I have managed to return to a working situation – something which I had been far too unwell to do for the previous five years. Having somewhere that WASN’T the hospital to go to two days a week has restored my sense of independence and normalcy. It has also given my brain a bit of a stretch and a chance to feel as though I’m contributing to society once more and that in itself is a huge reward for me.
I have been incredibly fortunate in that my transplant was very successful, and that my pancreas has worked pretty perfectly (with the exception of the odd occasion). That means that I’ve not had to have a single insulin injection since the transplant, and that equates to around 728 un-required injections. In a life where I had previously known no differently, it still blows my mind every single day. And while I rejoice in the fact that this part of my life has been “fixed”, I also realise the fragility of Patty, and how grateful I am EVERY DAY that I have been so far. I am still very cautious about how much sugar I consume, and still check my bloods sugar – although it is now a random test rather than the 6 or more times a day that I was once resigned to. Once again, there’s a statistic for that – 1092 - another number that blows me away, especially as testing my blood sugar I SWEAR I could do in my sleep. And while my life is still ruled by regime and alarms, the regulation of taking a handful of pills four times a day has far less impact than either the testing or injecting ever did.
And that brings me to the final number – 1. It represents the life I have been given. I have never considered my transplant to be my “second chance” at life, because for me, I missed out on a lot of things due to my illnesses, and still will, but the fact that I am now a lot more free to go and experience life for all its fullness and richness is something that I am truly thankful for. So happy six months Billy and Patty – I am so grateful to have you in my life, and I can’t wait to see where life takes me from here.
The third “guest blogger” in this series is from Frank Simovic, who has already been through two kidney transplants, and has been on dialysis for the past 15 years, whilst waiting for that all important call which could save his life.
Frank has also been a great competitor in the Australian Transplant Games, just like our previous blogger Jasmine. For more information about the Games and how to get involved, please visit www.transplant.org.au
Thank you Frank for your great contribution!
“My brother was diagnosed with Alport Syndrome (a disorder which damages the tiny blood vessels which filter wastes in the kidneys) in 1973 I was 11 years old when the whole family were checked to see if anyone else had it. I did.
I was lucky enough to be under the care of Dr John Agar, who is one of the best kidney specialists in Australia. He goes overseas to find and improve treatment for dialysis patients, and brought back nocturnal dialysis for patients in Geelong, which was the first place in Australia to try it and now it is going on all around Australia.
I had my first kidney transplant in 1982 at Prince Henry Hospital. I was 16 at the time and waited 8 months on the transplant list. Transplant lasted 3 and half years.
I was again placed on the transplant waiting list, and waited for 8 months before receiving my second transplant at Clayton Hospital in 1986. That kidney and lasted for 7 and a half years. I was back on dialysis in 1996.
I then went for my third transplant at St Vincent Hospital in 2005, but the surgeons couldn’t find suitable arteries to attach the kidney because the immuno-suppressive drugs I had taken for my previous transplants had wrecked the arteries on my left side.
This kidney had been the best match of all - matched 5 out of 6.
The donation was not a complete waste; the kidney was donated to someone else and was very successful. I am still happy another patient got the kidney.
Now I am back waiting for that third transplant, but a match is a lot harder to get a match because my antibodies are different, which makes it difficult to get a good match.
I have been waiting for 15 years now.
I just go with the flow and know that one day I will get a kidney transplant.”
Frank proudly showing his medals from the 2010 Australian Transplant Games
In the second blog of this series, Jasmine Storey-Robinson tells her story. Jasmine is almost 15, and has lived a life way beyond those years.
I would really like to thank Jasmine for sharing her story. I have found sharing my experiences a little daunting at times, especially sharing with those who don’t know me, or may never meet me, so for someone so young to contribute is a great thing!
To find out more about the Australian Transplant Games (to be held 29th September to 6th October 2012 in Newcastle, NSW) go to http://www.transplant.org.au
“I was born slightly jaundiced but not enough to be worried about. Just a few short weeks later when I went for my 6 week check-up, the doctors discovered I was in desperate need of a liver transplant. I had my Kasai procedure which brought me some time but it wasn’t a complete success as my liver deteriorated rapidly. I was not supposed to live past my second birthday and my parents were advised to get a video camera and enjoy what they had left.
I ended up on the transplant waiting list at 11 months old and finally at 18 months they found a donor, a match but it was a false alarm.
I was a happy baby, loved life, loved the nurses and doctors who gave my stickers and lollies, even the ones who didn’t. I smiled at everyone and everything! I just saw the best of every day. I made it past my second birthday amazingly but diseases wait for no one. My arms and leg just got thinner and my stomach swelled more and more each day. The damage eventually caught up to me and one day I just couldn’t get out of bed, I didn’t want to play with my toys, I knew it was over. No amount of medication could ever help me now, my skin was pumpkin orange and my arms and legs twig thin.
The specialists came in every day, they were quiet, as if they knew what was happening to me, but didn’t want to say it. This went on for days - they came in, looked at me, said nothing and left. The clock ticked and the painful wait for my parents grew more intense each day.
Finally one day they came in and they spoke. A match! Someone who was willing to donate! Someone who could really save me. But the question still dawned on my parents. What if it was too late?
But it wasn’t. 12 hours in surgery and I was back in Intensive Care, playing with my Tellieitubbies (my fave show back then) and smiling and happy as ever! Just 9 days later I was out of intensive care - no tubes, no drips - nothing! Within a month I had doubled my body weight and was out of hospital.
I’ve never looked back. I still have to go for 3 monthly check-ups, but everything else is great!
Growing up was not very different to anyone else I guess. I caught the common cold every couple of winters as everyone does and went through life normally. I’m able to play sports, and read and write just like everyone else I know. The only difference between me and other kids I can find is that I have to take anti-rejection medication every 12 hours and I have a massive scar on my stomach everyone asks about. I do have to be careful at times. Any seriously sick people I have to stay away from as everyone does I guess. I won’t be able to drink alcohol when I’m older because of what it can do to my liver but that’s probably a good thing! Because of my medication I’m a bit clumsy but that’s it!
I am happy and love to enjoy life! Everyone reckons I’m hyper-active, but it’s just the fact that I’m able to wake up every day and not have to worry about anything that’s what makes me so happy :D I have a part time job and can function like any ‘normal’ person and if I didn’t tell anyone I don’t think they would even know that I was born with a life threatening illness!
At times throughout my life I felt like I was the only one but that was when I discovered the Transplant Games! I went there a couple of times and met so many amazing people with the same kinds of experiences which was just fabulous and it gave me the reassurance that I wasn’t the only one. I’m hoping to go again next year and I’m already fundraising!”
Jasmine and her siblings last year. (L-R:Lily, Jasmine, Jericho and River)
Over the few short months writing this blog and doing volunteer work for Transplant Australia, I have heard some amazing stories. In the next few blogs, I’ve decided to gain some perspectives from a range of different transplantation situations
The first “guest blogger” - Clive Clark, is one of the approximate 1,600 Australians waiting on the active transplant list. Many thanks to Clive for sharing your story.
My name is Clive Clark. I am now 62yrs old, this my story:
It all started in July 2008 when we came back from a trip from Cape York. When walking to the tip, a lady said “who is huffing and puffing?”, she looked at me “god you are so unfit Clive!” I though that I had always been reasonably fit.
When we came home my wife and I talked about it. After a visit to my GP for a check-up, I told him about what had happened. He put me on a puffer which I used for 6 weeks. It was doing nothing so back to the GP, he asked me when the last time was that I had a chest x-ray, and I realised about 15 years ago.
That’s when it hit the fan. The GP called me back the next day to say that there was black all over my lungs. So off for another x-ray and scans. The report showed there was scarring and fibrosis. I was then referred to the lung specialist at John Flynn Private Hospital. After all the first lot of tests the specialist put me through, he said that I was young enough to go through the lung biopsy that was to be performed in September.
The results came back in a week with hypersensitivity phneumonitis so treatment was a large dose of prednisolone for 12 weeks, after the 12 weeks. I went back to the specialist, to report that the prednisolone had not worked - it was then decided I should be referred to the Lung Transplant Team in Brisbane.
In the meantime, I enrolled in the pulmonary rehabilition course at my local hospital. When I started I could only walk 300metres. The course ran for 10 weeks and by then I could walk 500metres.
In December 2008 I went to Brisbane to see the Transplant Team Physician, he said that as I was managing my condition with diet and exercise, to keep going as I was and to get regular checks with my Specialist in John Flynn..
In August of 2009 I went on sick leave from my work, (having already reduced to part time due to my illness) because the coughing and the hacks didn’t allow me to do my job properly . I did not work after that date, using my annual leave and long service leave with support from my wife working full time. She worked part time in 2010 to help me at home.
I had regular visits to my specialist over the next period and finally in May 2011 my spirometry reading dropped by 15% so I went back to Prince Charles in Brisbane to see the Lung Transplant Team. We knew that the time had come to discuss transplant, and I was assessed in June to see if I would be suitable for a transplant. It took four days but I had to go back for more tests the following week. After that I had a 6 day stint in John Flynn Hospital with a bad virus. I lost a lot of weight but have now gained some back. I also got the good news that I was a suitable patient for transplant.
Regular visits now back to Brisbane monthly. I have been put on the ACTIVE WAITING LIST due to my deteriorating health and now wait for the call that will save my life and give me the opportunity to watch my grandchildren grow and my wife and self to have some quality of life.