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

High Heels and a Sports Car

Kylie had this post saved in her draughts and didn't want to waste it:

A few people have asked me lately how I went about building my self-esteem and self worth and I am happy to talk about that aspet of my life. For whatever reasons, I used to hate myself. I mean really hate myself, I honestly used to think that I was ugly, stupid and pathetic and while on the outside I appeared super confident, inside I was full of loathing and self-hatred. My life and my perception of myself changed when I began to see a counsellor, whom helped me to turn my life from what circumstances had shaped it to be into what I wanted it to be. I used to look at beautiful women in fantastic high heels and a sports car and long for such things, but I never dared to actually wear towering heels or own a hot looking car because my internal critic would tell me because I was so ugly I would look ridiculous in heels and a sports car and people would laugh at me. So I wore sensible shoes and drove a sensible car, all so I could be as invisible as possible so no one would notice me and therefore notice how ugly, stupid and pathetic I was.

Somewhere in my head I knew this was no way to live, yet I lived like that every day until I was around 30. Things started to change between my husband and I and I started to see my counsellor Lisa. Seeing a counsellor quite literally changed my life, she helped me go from a woman who only wore sensible shoes and hated herself to the very core, into a woman who only wears towering heels and loves and likes herself to the very core. It took so much work, soul churning, buckets of tear shedding work but I can now proudly say that my life is (cf and transplant aside of course) what I wanted it to be.

One of the first things that Lisa and I worked on was changing my inner dialogue. The way I used to speak to myself in my head was so vile and disgusting that I would never speak to another human being in such a manner. 'You're disgusting, you're pathetic, you're nothing' were only a few that I am willing to repeat, most were much, much worse. Lisa asked me if I would ever speak to a 2 year old child like that and of course the answer was no, not in a million years. Lisa had me visualise myself as a 2 year old little girl and try to say those vile things to her. I couldn't do it, not even in the privacy of my own brain. So thats how I started. Everytime I went to speak to myself in such a manner, I pictured cute, little Kylie and try to say those things to her. At first sometimes it worked, sometimes it didn't, then I started to notice that I was speaking to myself like that less and less each day. It took a long time, months and months of concerted effort, but eventually I realised that it just wasn't something I did anymore, it was gone from my behaviour.

That was just one of the first behaviours that Lisa helped me to change and later on I will tell you about more of them. And just in case you were wondering, I am now addicted to high heels and I did buy myself that sports car. And I looked hot in it everytime I drove it!

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

I don't know why but I'm feeling super creative lately, I did some painting last week and yesterday I made a dress. I am the worlds least perfectionist-seamstress so no one can look on the inside of my dress to the see the standard of work!! lol. I had to un-pick and re-do it all a few times and some very unladylike words were steaming forth from my pretty little mouth, I can tell you!! The old Kylie would have just thrown the half finished dress away at the first sign that it wasn't all going to plan but I'm proud to say that is not what I do anymore.

You see I used to be the ultimate "give up on it" person at the first little bump in the road, I expected perfection from myself first time and every time. My history is scattered with half-done hobbies, incomplete projects and lots of great ideas but not much actually accomplished. I honestly would become completely disgusted with myself when I would try to make something and it didn't turn out like the picture in the book that I would just give in and throw it all in the rubbish. And this also made me not try lots of things too, if after reading how to do it if I thought I would find it in the least bit challenging, I wouldn't bother even giving it a go, so convinced of my imminent failure. The funny thing was that while I expected perfection in myself, I didn't in others; I would feel genuinely proud of others whom would just give things a go. I would honestly see past the mistakes and dropped stitches in something that a loved one had made and see the time and effort that they had put into whatever project they were showing me, but me, no way! It had to be perfection the first time or it went in the bin.

I don't know how or why things changed for me, perhaps I was just sick of all the half-done projects in the back of my wardrobe, I really don't know. But now I do give things a go and I realise that if it doesn't turn out perfectly the first time then that's ok, I can re-do it over, or start again or use what I have learned and start something new and I'll probably get it right this time.

So that's my bit of wisdom for the day, lol.

love

K