I Did It!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I successfully completed the 36 floor abseil to raise money for Save the Children - Australia dressed as Batgirl. It was a lot more daunting than I thought, 140 meters above the ground is quite a ways and I was glad that I wore the face mask because when I tried to look down whilst dangling there, the mask obscured my view and I couldn't see how far I could possibly fall! The entire thing was organised wonderfully and I was particularly impressed with the abseiling staff. They were all complete professionals and I felt so safe and secure under their capable guidance. Well, as safe as one can feel inching my feet off a ledge 140 meters above the ground. 

The rope that went from the top of the building to the ground was incredibly heavy, 25 kilos, and I simply couldn't push it through the "whale tail" metal thingy to propel myself down, I don't have the physical strength in my upper body yet, so the wonderful team did all the work for me and gave me a thrilling ride down so I could bounce off the glass and whizz down as fast as I wanted. 

On the whole it was a fantastic experience and I was so incredibly touched by the support, both financially and otherwise, that I received from my friends and family. I raised a total of $1560 to help Save the Children and since this is the first time I have ever done any fund raising like that, I am blown away by this amount. 

So my two big celebrations for my 12 month transplant milestone I have achieved; getting married to the man of my dreams and doing a big adrenalin inducing event. What's next for me I wonder??????

Love

Kylie

12 Month Celebration!!!!

To celebrate 12 months since my successful double lung transplant I have decided to participate in an ultimate adrenalin challenge, abseilling 36 floors down the 'Gold Tower' at 10 Eagle St, Brisbane on Saturday 18 May 2013 dressed as Batgirl!

I am aiming to raise money for charity and I would welcome any contribution, great or small, that you could make!

Check out my fundraising page: 

http://36floors.gofundraise.com.au/page/anunfinishedlife

What It Means to be Poor

Billy all dressed up with his tie on! 

Hello everyone!

Last week it was 7 months since my transplant and I feel terrific! I have had no bouts of rejection and we have even been able to start lowering my meds, yay! I'm back at work full-steam and loving it. Brad and Billy are wonderful, I fall in love with my beautiful fiance a little more each day, he just amazes me with his ability to come through for me and make my life better just by being in it. So what's been on my mind lately?

Years ago I read a human interest article titled "What it Means to be Poor" where the author interviewed many people living below the poverty line in America and had them sum up in one to two sentences what it means to them to be poor. The answers were heart-wrenching and incredibly insightful for myself, someone whom has grown up poor but never actually did without anything I really needed and was certainly nowhere near the poverty line. One particular response in the article has always stuck with me: Being poor is still paying the price for your bad decisions, years later.

This recently came to my mind when Brad finished paying off a personal loan that he had been carrying around for years. I'm so proud of him; when we met he had several loans and a sizable credit card debt and in a few short years he has paid off the loans and now just has the credit cards to pay off. Now I am extremely cautious financially, growing up poor my mum instilled in me great budgeting skills and then my ex-husband and I never got into senseless debt; we drove old cars and budgeted strictly. Therefore being in debt with personal loans and credit cards is completely foreign to me, so when Brad told me how he had finally succeeded in paying off his last loan, I asked him what it was that made him get into such debt in the first place. His truthful answer really surprised me, when he was in his early 20's (he's now 31) he was in a long-term live-in relationship and his girlfriend was chronically unemployed. So Brad was going to college and working part-time to support himself and a lazy-assed girlfriend who just simply didn't want to work.

Because he was out of the house so much he would give her the cash to pay the bills and come home to find that she had spent the money on takeaway food and clothes. These were the days before EFT and the like, so a few months down the track they would get a final notice on unpaid bills, including rent, and he had no choice but to get a credit card to get the electricity reconnected. This went on for a couple of years and I incredulously asked him why he put up with it? His answer: She was hot. He knew that she was just lazy and using him, however he had low self-esteem and was willing to pay for everything to keep her.

So that brings me to the article on poverty: Brad was still paying the cost of his bad decisions years after the relationship ended. Isn't that incredible? The decisions he made as a young man with no self confidence literally took him years to pay off. Looking back on my life the main decision that I made as a young woman, or rather inaction on my part, was not looking after myself when I was younger that would possibly have put off the need for the transplant. Things may have worked out with the transplant, however the fact remains that I  now have more-or-less a time limit as to how long my new lungs will most probably last for (10 - 15 years on average) therefore each time I didn't exercise, I didn't do my physio or I didn't take my  meds when I just had cf, has literally taken years off my life. Hindsight it a wonderful thing, woulda-shoulda-coulda, but I can honestly say that this hindsight has given me a very strong determination to do everything within my power now, to preserve my new lungs and possibly prolong what lifespan I do have left.

Give some thought to what decisions you may be making in the present that could negatively impact your future.

Love

Kylie

Thinking, thinking, thinking......

I had a great session with a terrific spiritual healer last week, Sarina Damen (http://www.sarinadamen.com/) and we spoke about a few issues that I carry guilt over and Sarina said something that really resonates with me, "Guilt guides you to where the healing needs to go." Now isn't that something to think about? I have always been taught that guilt is a destructive emotion that should be avoided at all costs but if you look at it at as a signal of where to do some inner work, it turns into a positive thing, and there is nothing more than I love to turn negatives into positives! What are some situations that you have turned from a negative to a positive in your life?

On a side note I came out of hospital last week and at clinic this week I blew the highest breathers I have since transplant, yay! I feel fantastic, which is how I expected to feel after transplant, it's only taken 9 weeks, lol.

Thank you to all your messages of support and caring, I sincerely appreciate it.

Love

Kylie

Home Sweet Hospital

Well I'm in hospital again with another infection, hopefully just a short stay this time. The weird thing is, I feel great, not sick in the slightest, however when I had my routine bronc last Friday they found infection. But there were no signs of rejection, yay!

I've been studying heaps and I'm really getting through my counselling workbooks, I'm doing number 15 at the moment and there are 22 in total. I have decided to continue studying after I graduate from my Diploma of Professional Counselling and enrol in a Bachelor of Counselling, which will take me years to do however I'm determined to finish it. I will do the Bachelor through the same place I'm doing the Diploma, The Australian Institute of Professional Counsellors, http://www.aipc.com.au/.

I attended the Prince Charles Transplant Support Group this morning, what a terrific resource to have and a great group of people to meet and chat with. I got a few tips from people whom have had transplants a long time ago as to how they stay healthy, I shall be pursuig these ideas with gusto!

Anyhoo, overall I'm great, this is just a small setback on an over-all smooth journey.

love

K

What I'm Reading

I'm currently reading a great book titled "Outliers" by Malcolm Gladwell and it has really had an impact on me. In it he talks about the two very different paths of two geniuses; one with an enormous IQ, growing up on the right side of the tracks and going on to huge academic success, the other growing up on the wrong side of the tracks, achieving absolutely no academic success yet his IQ is considerably higher. Now I grew up poor, real poor and I also had the distinct disadvantage of being an ugly child, so as a poor, ugly child I learned very early on that it was best to be as invisible as possible and not draw attention to myself. Malcolm Gladwell argues in his book that the difference between the success and non-success of the two geniuses is the social structure they grew up in, in a nutshell poor people teach their children to be meek and subserviant and obey orders wheares middle-upper class people teach their children to speak up for themselves and to be noticed and confident.

Now this is a huge revelation to me; I thought that I just happened to be ugly, shy and poor but if I look back, I learned to not draw attention to myself otherwise I would be ridiculed or bullied. The thing that really blows my mind is the far reaching implications this "learning" has had for me as a child, as an adolescent and as an adult. I'm very different now to how I used to be; shy, self-hating with no self-confidence yet I still have to force myself to speak up and stand up for myself, particularly when with figures of authority. 

When I'm sitting listening to one of the transplant team tell me that I am going to do something or other, my first instinct is to say ok, and just do whatever they tell me to, but I force myself to question them, to ask, Why? What are the possible side-effects? How long do I have to do this for? It's a real challenge to me. Even though I appear to be a successful, together woman, and for most parts I am, but there is still a little tiny Kylie inside me whispering "Be quiet, don't draw attention to us, be invisible!" This little voice gets smaller all the time, but it takes effort. It takes a constant positive inner dialogue and healthy self-talk. 

But its worth it, its so worth it.

Love

Kylie

What's Happening

Sorry I've been off the radar for the last week, I got home from hospital last Monday, just in time for my birthday on Tuesday :-) I turned 37, which I am not thrilled with, but what can you do? I have been good, I now only have to go to clinic once a week instead of twice a week, which is so exciting for me.

You see, clinic now entails a blood test, an xray and breathing tests, each and every clinic visit, then you see the physiotherapist, dietitian, transplant co-ordinator and then the doctor; its exhausting. The worst bit is the waiting around but everyone is in the same boat so all you can do is re-read the same 7 year old magazines you read 2 days ago. I can now also drive myself, but locally only, not over 80kms. This is in case of a head-on collision at 100kms would do serious damage to my sternum and lungs.

I had a great birthday, I got woken up to beautiful gifts from Brad then he got my breakfast and I went to a family lunch at my aunt's house. In the afternoon I had two friends from work visit me whom I adore and they brought me some gifts that my workmates had put in to buy me. The day was finished off with a quiet dinner at home with Brad and Teddy with the fireplace blazing because it was a freezing cold night. All up it was lovely, I was spoiled rotten, as it should be in my humble opinion!

I had an exciting weekend; I attended my first Toastmasters workshop in around a year. It was so lovely to see old friends and make new ones. I was lucky enough to be invited as a guest on the day by the gracious organiser and I had actually asked for a minute on the agenda to say thank you to everyone for all the support and encouragement they had given me throughout the transplant. Well to my surprise I was allotted 3 minutes on the agenda so what had been a "I'll just say thanks for all your support" thought turned into a Table Topics on the spot! I must have succeeded in getting across my heartfelt thanks because afterwards several people approached me.

Today I brought an overlocker off Ebay. Although its a few years old, its an Elna and works well and I'm really excited but also nervous to use it. It looks very complicated and Brad's mum had one when he was a kid and his only advice was that 'overlocker' must be a German swear word because that's what you do before you throw it out the window because you can't get it working! Great, thanks for that fiancee-o-mine!

Anyhoo, Teddy is well and looking very cute, his curls are coming back and he's looking like my lamby again. Brad has several new clients and I'm powering ahead in my course.

love

K

The Dreaded R Word.......................

Rejection, the dreaded R word has now entered my world. I went to clinic today and due to some test results my medical team are concerned that I may be rejecting so I'm having another bronc on Wednesday. Yay, not. Rejection. What. A. Scary. Word. I'm terrified and my mind is still processing it so I can't talk about it anymore.

On a lighter note, since I came home I have been struck by how much I let slide for the last couple of years when I got really sick. My whole house is in disarray and my hands are itching to make it right. I started with my jewelry, all of my necklaces were tangled and impossible to see so I went to a fishing supply store and bought these terrific hook and lure organisers. The dividers can be taken out between sections and I have stored all of my necklaces and bracelets in two of these organisers. Pretty neat huh?

Anyhoo, my head is still spinning from the R word, any prayers you can send my way would be much appreciated.

love

K

5 Unexpected Side Affects of Transplant

It will be 4 weeks this Sunday since I received my gift of life and I thought I'd share with you my 5 Unexpected Side Affects of Transplant:

1. Even though I was told it would thin, the skin on my hands has become papery and crepe-like. And when I get my hands just the tiniest bit wet, my fingers and palms go pruney, gross.

2. From when I woke up after the transplant for the next week, my vision was blurred; to the extent that I couldn't read or watch television. That was apparently due to the high doses of steroids I was on and my sight is now back to normal.

3. My sounds have changed. From the way I belch (very lady like I assure you!) to the way I sneeze, it is all different now and I'm still getting used to it.

4. I've been feeling super creative since the transplant, I've been dreaming up paintings I can do, dresses I can make, you name it and I have an urge to make it. Weird.

5. I now sound like a cheap phone sex worker because my vocal chords were damaged a little during surgery. My voice is now raspy and gravelly but it will get back to normal eventually. And yes, that is hysterically funny all those who have suggested that I can now get a second job. Lol.

love
K

I'm Going Home!

Well I got word today that I can go home on Monday and I can't express how excited I am about it. The majority of the swelling has gone throughout my body, so Brad can no longer make funny faces with my fat knees! To 'test the waters' tonight Brad took me out to dinner. It was both scary and exciting but we had a great time eating mexican food. Then to make the night extra special for both of us we called into Brad's mecca, Bunnings, on the way home, lol.

After coming back here to the hospital I was invited to join in some girlie chat with some nurses on night duty here. Boy, I though my switch family and I could educate each other one some new words, but I learned a couple tonight that I will have to share when I get back to work.............lol.

Anyhoo, I'm now officially buggered. I've had 2 hours of physio today and dinner out so it's bed time for me.

love

K

14 Days Into My New Life Part 2

Monday14 May 2012 - Today I had a broncoscpy. This is a minor procedure where you are put under twilight sedation and a camera is passed through your mouth into your windpipe and the doctor checks to see how your new lungs are looking. This wasn't a big deal, just yuk because I had to fast from 6.00am that morning and the procedure wasn't until 1.00pm.


Tuesday 15 May 2012 - Today was pretty monumental, I walked outside for the first time in 2 weeks and my physio and I walked approximately 400m in the glorious sun. It was the first time I have been able to walk that far without becoming breathless in years, I was so happy that I cried. It was also huge in that I started wearing my own clothes again. Because I am so wobbly on my feet, it took me 15 minutes to get my hospital gown off and my pyjamas on, but I was determined and I got there in the end! My education as to what my life will now be like as a post-transplant patient started today. Additionally my main wound dressing was taken off. This was weird, I have no other large scars, so seeing my scar for the first time was quite confronting. In the afternoon my body started to retain fluid and I started to swell up all over.

Wednesday 16 May 2012 - Today my left arm started to swell, this is the arm with the picc line in it to deliver iv antibiotics. I had an ultrasound and they found some small clots around the line so the decision was made to remove the picc and put another central line in, which is a drip in my neck. I got my 4 sutures out of the bottom of my wound.


Thursday 17 May 2012 - Today I got the new central line it, its really sore but absolutely necessary.

Friday 18 May 2012 - Today I did 30 minutes on the exercise bike in my room and walked the corridors yet again. I get 2 hours of exercise a day and my physio Matty is terrific. When I first met him I told him that I am super keen and super motivated but I don't respond to yelling. He replied that that's ok, he's not much of a yeller anyway so we'll get on just fine. I was so relieved to hear this. The last thing I need is a drill Sergeant for a physio. I am so swollen all over, my belly is huge and covered in spots from the anti-blood clotting injections and insulin I have been taking.


Saturday 19 May 2012 - Today I did something pretty huge. Before you can be released from hospital after transplant you have to walk up the hill from the main entrance to the hospital up to the main building. This is a hoo-er of a hill and challenges the even the fittest. And I did it with Matty pushing my iv drip pole the whole way. I am really proud of this. My diet will adjust hugely and I can no longer eat any deli meat at all. Brad bought an assortment of sandwich meats for me to try :-)

Sunday 20 May 2012 - Today was pretty quiet with lots of reflection. I got new lungs 2 weeks ago today. What's in store for me next?


love

K

14 Days Into My New Life Part 1

Well it was 14 days ago today that I received my double lung transplant; I'm going to give you a day to day account of my experience for the first week.


Sunday 6 May - I received the call at 5.19 in the morning that donor lungs may have become available and I needed to fast. I was warned repeatedly that this may be a false alarm. We received final word that it was a go ahead at around 1.00pm and I had a shower with surgical soap and dressed in surgical gowns then hopped into my newly made hospital bed. At 3.00pm I was taken up to theatre accompanied by my fiancee Brad, my mum, my sister, my cousin and my aunty. They were allowed to walk me all the way to the doors of the operating theatre and it was very emotional saying goodbye to them all knowing that it was possible I would die on the operating table. The funny thing was that I felt a huge sense of peace and flow the whole time, my gut kept telling me that I would be ok.

Monday 7 May - Sedated all day in ICU. I remember waking up with the intubation tube down my throat and gesturing with my hands for it to be removed. I was asked to cough as it slid out but I don't remember anything else.

Tuesday 8 May - I woke up in ICU and could stay awake for a few minutes at a time. A physio visited me and got me to stand up at the side of the bed, then another time I was walking on the spot. I also sat upright in a chair a lot rather than laying down as this is incredibly important for recovery.


Wednesday 9 May - All I could so was sleep, I would wake up for a few minutes at a time, do whatever the physio asked of me then fall back to sleep again, I remember walking around the ICU room. In the late afternoon I was transferred back to the ward I had came from and it was incredibly difficult to get up and go for a walk around the ward. I had 2 of the 4 drains removed.

Thursday 10 May - Basically I was totally incapacitated, I could not move without great assistance as I was still plugged into a 'christmas tree' of machinery and I was in a great deal of pain. I was hungry for the first time so Brad bought me some yummy greek yoghurt.


Friday 11 May - Today was a big one, I got the central iv line out of my neck, oh comfort! and got a new picc line in my arm for iv access. I also walked the corridor with the physio and got the 3rd drain out. The dresssing also came off my wound.

Saturday 12 May - I walked laps of the big corridor, around 400m per lap.


Sunday 13 May - More laps of the corridor, 2 hours of physio per day and I'm permanently exhausted.

As you can see, I have not had a quiet time of late! Along with the 2 hours of physio every day I also have several hours of education by the various staff of the transplant unit on subjects such as nutrition as a transplanted patient, medication and clinic visits etc. It is huge and full on and poo-my-pants-scary.

I will write more when I can download more photos to my laptop.

love
K

Thank You

To the amazing family of the donor of my new lungs

How do I thank you for quite literally giving me the gift of life? Words can't describe the myriad of feelings and emotions going through my heart and my mind and have done since I woke up from the surgery, but the foremost emotion is gratitude. I am so grateful that you looked through your unimaginable grief and choose to grant me the gift of life. I am eternally humbled and honoured and I will strive for the rest of my life to live a life worthy of such as selfless act as yours.

with a full and loving heart

K

New Lungs, New Life

Hello everybody

 

Well I got my transplant, at 5.19am last Sunday morning 6 May 2012 I received the call that some donor lungs had been offered, however it was very early in the proceedings and there was a big chance that it would be a false alarm. I was already in hospital with a mild infection so I all I had to do was wait. My gut told me that this was the one, there was no false alarm and this was it so while my family and Brad were nervous wrecks all day, both my mum and I knew this was it and we both felt calm and peaceful all day. In fact I predicted through numerology that I would get my transplant this May. I was given the 'yes its a definite go ahead' at 1.00pm and I then showered and hopped into sterile gowns.

 

I was wheeled into the operating suites at 2.00 and I said my farewells to my family at the doors; I was taken directly into the operating theatre. I spoke with an anestathesists and she agreed to take some pictures of my old lungs for me. The next thing I knew I woke up in Recovery with the intubation tube in and I was gesturing for it to be taken out; when it was I was taken to a private room in ICU and I woke up again the next day. I would like to say that my breathing immediately felt good but it was far, far from it, it still is in fact. I was woken up by the physio whom explained to me how to breath with my new lungs and then asked me to cough. The only word that comes to my mind and it does not even come close to describing the sensation, is PAIN. The pain I experienced was beyond my comprehension and I am still in a great deal of it now when I breathe deeply, which is all the time because I have to do breathing exercises virtually constantly. The physio was wonderfully caring and supportive and had me stand up and then stepping on the spot off the ICU bed, I later walked with huge assistance around the ICU room.

 

The care I received while in ICU was one-on-one, top-notch nursing care and words can't describe the appreciation I feel for them and the job they did. My progress was going extremely well and I could have left ICU a day early however there were no beds available with a 'special care' nurse that day, so I left ICU after 3 days there. I have been on my normal ward for 4 days now and I have received one-on-one care 24/7 the entire time, it has been just one step up from ICU care it is that amazing.

 

I have experienced more pain and physical agony than I knew it was possible for a human being to endure but it gets a little easier each day, not a lot but a little. Medically I am doing incredibly well and all I can do is hope that it will all be worth it in the end. Thats what I'm hoping anyway.

 

love

K

Transplant

At 5:00am Sunday Kylie recieved the call for a transplant.

The operation was a complete success, with less than anticipated complications and completed in half the time the surgeon thought he would need.

It could not be possible to ask for a better outcome, the success of the operation is a gift that trumps only its fortunate timing.

The transplant donor was compatible only with her, this situation was the only way that Kylie would recieve her new lungs sooner than realistic expectations, as due to her common blood type while we knew she would recieve a donor in time, to be fair to other recipients that time was first going to have to run short.

The ability to talk about her feelings and everyday dealings with her condition has been almost as good a help to her as knowing that there are people who care enough to read about them.

Kylie is recovering amazingly, and has been showing signs of her normal self and attitude, but while her physical ordeal is over, she has a long struggle ahead while she deals with her new life.

Kylie gets great encouragement and satisfaction in finding that people take time to care about her life and struggle, and I personally thank and applaud your efforts, they give her so much encouragement.

Thankyou all for all your support. she will need it in the coming months.

Another Infection.................

Well as my title suggests, I have another chest infection and I'm in hospital again. As I've mentioned in a previous post, I walk extremely slowly now, around the pace of a snail and I have to stop every 10 meters or so to catch my breath. What I am having trouble getting my head around is that I used to only be like this when I was sick, but that's my normal now. I have a constant battle with my head, in my mind I can still do a 3km fun run, but its extremely hard to come to terms with the fact that my body can't do what my mind wants it to anymore.

Never before in my life have I seen myself as a sick person and I still don't want to now. Seeing myself as a sick woman just isn't who I am and I have worked so hard to build my self-esteem and a positive self-image, how do I incorporate 'sick' into that and not have it effect me negatively? I really don't know and I think I'd rather see this as just a glitch in my life that has slowed me down for a couple of years but I'll come out of it better than ever.

I hate it when someone whom has survived a terrible illness says about themselves, 'I wouldn't be the person I am today without the cancer/accident/fire' I think that's crap, I know that these survivors say this in order to make sense of what they have been through, but I think that it is giving an illness or tragedy way too much credit and power. Bad things happen to good people, but that doesn't mean that the person wouldn't have grown and developed inner strength if they hadn't lived through a terrible ordeal.

Anyhoo, that's my opinion on the subject. I would be awsome without cf!

love

K

An Update

I thought I would give a general update into my life since it is a while since I've written about general stuff. We live in a high set house with the laundry situated downstairs and this is a very real issue for me as there is no way I can make it downstairs carrying a basket full of laundry and then back upstairs again. So Brad has been doing all of our laundry and I just put it away when its done. I hate this, I hate that I can't run a load of knickers when I'm getting low instead of having to wait till Brad gets home from work to do them. Therefore we decided to re-do our bathroom; it had a separate shower and bathtub with a half wall dividing them so we got my ex-husband Michael in to do the work and he built the dividing wall to full height, relocated the shower over the bathtub, ripped the old shower out and built this into a laundry cupboard and re-tiled all of the walls and the floor. The job has been taking much longer than we originally thought but its nearly finished now, yay! I can't wait to get that little bit of independence back again.

Brad has been working really hard lately, he's been working full time, running his free group training classes, working with private personal training clients and helping Michael to do the bathroom. Its a full-on load and I admire him so much for what he accomplishes. Yesterday Michael called in to meet the electrician and brought his two young children with him, the little boy was tired and Brad had worked night shift so he and Brad had a nap on the couch. The little one is difficult to get to sleep so I was incredibly proud of Brad when he managed to pat him to off to sleepy land. Teddy was exhausted from chasing the two kids so clearly he needed a nap too :-)

Health-wise I am so so. I had been feeling like crap and my Dr Phil was talking another admission but I managed to negotiate a weeks reprieve and I'm feeling much better now. I don't know what happened but I've got clinic again on Thursday so we'll see what happens to my breathers and take it from there. I had been really slack with my counselling coursework but I started to apply my "just this time" principle to it and it is working amazingly well! In my mind I had always thought that the only way to study effectively and succeed at study was to sit down, read the workbook and answer the questions consecutively and to do this for several hours at a time. Well applying my just this time approach I started to do the assigned reading and then only answer one question, just this time, then I would do a bit more later. Well low and behold I have 5/6 finished my next workbook, in a week!! OMG, I have never done a workbook this quickly before and I am absolutely amazed that this approach has worked. I was thinking the other day that it would be practically criminal of me to not use this time while waiting for my transplant to do my coursework, who knows after transplant how long it will take before I am up to doing anything of my former life?? So I am very proud to say that my just this time is really working for me.

So that's where I am up to, physically not fantastic, lots of pain in my lungs but I'm still here. My bathroom is almost done and I'm kicking goals with my course work. And my beautiful fiancee Brad is my rock, as usual.

love

K

Education Schmeducation

When I was in high school I chose the easy subjects, ones that I didn't really have to work hard to pass and this is exactly what I did, no work and just passed, no notable achievements what so ever. I did gain a place at university to study a Bachelor of Teaching - Primary, however this is where I came unstuck and for the first time in my life I had to work to pass. I discovered very quickly that I simply did not know how to study. I had no idea how to take lecture notes, write a university-level essay etc, I was out of my element. As a consequence in my 1 year at university I failed 9 out of 11 subjects and quit university. It was clearly everybody else's fault and not mine. :-)

Twenty years after I graduated from year 12 I am still in the same position, sort of. A few years ago I realised that my lack of any tertiary qualifications had made a massive dent in my self-worth and self-esteem. I know full well that having a Diploma or a Degree doesn't necessarily make you a smarter person, I know plenty of dumb people with Degrees, and it certainly doesn't make you a better person either, but I have always felt a huge disappointment within myself because I don't have a tertiary qualification of some kind. It was because of this that I decided to enrol in a self-paced, external Diploma course to become a Counsellor.

I chose to become a counsellor because a. I've had truck loads of counselling over the last few years and I know the game pretty well by now, lol and b. I love the concept that counselling is based on; the counsellor teaching the client skills to cope with their maladaptive behaviours so they can apply them to any situation. This is what I found so invaluable about my counselling; on any given day I could be taught whatever technique and I would then have this skill forever so I could apply it to a multitude of other everyday issues that crop up in ordinary life.

I chose to study a course that was self-paced and external because in my previous job I was doing shift work and while I had a set roster, I also made myself available for extra shifts when available, therefore if I had of locked myself into a classroom based course I would have not been able to take extra shifts. While I am very ashamed at how long it is taking me to complete the course, I'm not even going to reveal how long I have been working at it, I am proud to say that I am still working on it and I will never give up until I have my own Diploma of Professional Counselling. It is done through a series of workbooks accompanied by a book of readings, so you read the appropriate section in the book of readings then complete the section in the workbook. Once the workbook is complete you send it in for marking; it is returned to you marked either Complete or Not Yet Complete. With each workbook I get back marked complete, it is like I am adding a little brick to my wall of self-worth that I am purposely building.

I am trying to use the most of this time I have at home waiting for transplant so I am really concentrating on getting the work done. I was stuck on one question for months and I was so angry with myself when I finally rang the Institute and found out that you can get a tutor to work through questions with you. Doh! I had no idea that anything other than the phone based student helpline was available. What's my lesson in this? To ask for help when I need it, not 5 months down the track! lol.

love

Kylie

The Choices We Make

Since this whole transplant thing has started, the thing that has weighed most heavily on my mind are the changes I will have to make to my day to day life after transplant and feeling scared that I won't be able to adhere to the regimen necessary to stay alive. Well I was watching "The Biggest Loser" last night, I love the politics between the contestants, and one of the trainers said something that suddenly made it all click for me. Shannan was giving his two contestants a pep talk and he said that success is a series of small, good choices. It was like a light bulb went off for me. I find that I very easily feel overwhelmed when faced with a large project or responsibility so over the years I have developed a strategy to deal with this: breaking the project down into small, manageable pieces then tackling them one at a time. For instance when I first started my counselling course I received my first lot of workbooks and was hugely overwhelmed at the amount of work in store for me, so I broke it down into small, sometimes ridiculously tiny steps such as cleaning my desk, reading the introduction page to the workbook, starting the first section in the Book of Readings. It might seem silly but without this strategy I would feel so overwhelmed and anxious that I would probably just worry about it and not have started the course at all, 3000 odd dollars down the drain.

So when I heard the trainer Shannan saying that success is a series of small good choices, I totally got it. Instead of looking at the huge lifestyle choices I will have to make after transplant, I will look at them as small, individual ones just this time. For example I feel completely overwhelmed to think that I have to exercise basically every single day for the rest of my life after transplant, so I will forget the "every single day for the rest of my life" bit and I will replace that with "I will go for a run now." Another example is coffee; I love it and drink too much of it, as is evident by the discolouration of my teeth. Next time I find myself reaching for a cup I will have a glass of water instead, just this time. I realise that this can't work every time, sometimes I may really want a cup of coffee instead of water and I will go ahead and have a cup of coffee, but if I look at it as "just this time" then it is far less scary than "I will never drink a cup of coffee again in my life."

I know to some people this might seem like a simplistic way of looking at things, but what is wrong with simple? I don't have to carry the weight of exercising every day, eating right every day, taking all my medication every day, FOR THE REST OF MY LIFE. Instead looking at it as just this time I will go for a run, just this meal I will eat healthy, just this time I will have all of my nebuliser even though it is taking forever! I feel like I have had a huge weight lifted off my shoulders. Wow, who would have every thought that reality television could help change someones life? lol.

love

K

The Decision

The decision to go on the list for a double lung transplant was massive for me; I take it as a huge responsibility that I take very seriously. I feel that I have a responsibility first and foremost to the doner and their family for giving me the gift of life then, I have a responsibility to my family, mainly my mum and dad, my sister and my fiancee Brad. In asking them to be my support people, I’m asking them to put huge amounts of time and energy into helping take care of me and I don’t take this lightly at all, especially when asking this of Brad. My mum has always taken care of me, and my dad and sister too, but although Brad knew I had cf when we started dating, he certainly didn’t sign up to having a fiancee with only 12 months to live and taking over the reigns of our entire lives from when I get the transplant and for months after as I recover and eventually take control of my health and body again.

I also feel a huge sense of responsibility to the medical team looking after me, the incredible cf team and the transplant team at the Prince Charles Hospital here in Brisbane. I mean, an entire team of surgeons, transplant doctors and nurses will one night be woken out of their sleep when suitable lungs become available, just to save my life. Mine. All this trouble for just one person, me. Am I worthy? Do I deserve this second chance at life? To be honest I don’t honestly know; I know that I’m a good person but I’m certainly not the type to live in poverty in order to help others . No sir, if I see a pair of stunning heels for half price I will scrap with the best of them to get my hands on the heels!

So with all of this responsibility stuff weighing heavily on my shoulders I received the news that a lady I knew whom had a transplant 4 years ago had passed away. I was really floored by this as she was a by-the-book patient; she did everything she was told, when she was told to do it and never deviated from the plan. Apparently her body started rejecting the lungs and the transplant team did everything in their power but just couldn’t stop it and she passed away peacefully at home with her family around her. I was really affected because I don’t know if I could ever be the kind of model patient she was and I was honestly was still deciding if I wanted to be put on the list or not. So I went for a walk to clear my head and I had a thought. It was so simple and obvious that I feel silly even repeating it, but it changed things for me. The thought was “I’m going to die anyway,” That was when I realised that I am going to die in the relatively near future, be it of cf or after transplant, but if this hospital is willing to put hundreds of thousands of dollars into saving me, then why not give it a go? Perhaps I’ll get another 4 years life after transplant, perhaps I’ll get 10 years, nobody knows. All that we do know is that without a transplant I will only live another 12 months or so. And quitting isn’t in my nature so that is when I decided to go for it, to pursue being put on the list for a double lung transplant.

I don’t know if I will ever feel worthy of what it is that I am asking my family and friends to support me through, all I can do is trust that if they are willing then I will take the support they offer me.

Love

K