Memory Making

Let me tell you a story. A few years ago I met a lady whom had 4 children under 6, I had heard all about her children, particularly “the troublemaker;” the eldest child, a little boy we’ll call Samuel, who was from her first marriage, which had ended very badly, with a lot of bitterness and pain. The other 3 were to her second marriage which was very happy and satisfying. I was visiting her at home and I met her kids, the baby of the family was around 18 months old, the next was another sweet little girl around 3, then there was a boy who was 5. And then there was Samuel, a blonde haired blue eyed angelic looking child whom clearly adored his mother. The first thing that I noticed was how she treated Samuel like a servant, this 6 year old boy fetched for her, cleaned for her, changed nappies, prepared bottles for his little brother and sisters, the kid was run ragged. He was pushing his youngest sister on the swing; she was the baby of the family and the absolute apple of her mothers’ eye, when suddenly we heard a scream. We rushed outside to find the little girl on the ground crying with Samuel trying to comfort her. He quickly tried to explain to his mother that she had fallen out of the swing, but she wouldn’t listen. She picked up the baby and went berserk at Samuel, “You pushed her, I know you did! I hate you Samuel, I wish you father would take you!” This little boy stood there and just took the abuse; what else could he do? His little face fell and then, and this is what really scared me, his expression went completely blank, he had obviously had this kind of treatment off his mother many times before. I was really haunted by this little boy; I went home that night with him on my mind.

I have two godsons; one of them was spending the day with me when he was about 4 years old. We decided to go for a walk to the local library and as we walked along we passed a house with a high timber fence. The next thing we knew, a huge dog ran to the fence and started barking viscously at us. Instantly I grabbed my godson and ran. Now, the dog didn’t break through the fence and chase us as I thought it was going to, but it was a scary experience for both my godson and I and we were a bit shaken up, but over all fine. It was a few years later at a family barbeque that my godson brought this incident up, and he very proudly told the family how brave I was and that I had saved him from the big dog. Apparently I was a hero as far as he was concerned; his memory isn’t of how quickly the whole thing was over, his memory is of the dog trying to get us through fence and me saving him from being eaten by the big scary dog. You know what, I’m fine with him having this memory of me, any memory where I am the hero is all good, but what I really care about is that my godson has a memory that he will take into adulthood where I took care of him, I was there for him; that’s what important to me. I think that sometimes as adults we get so caught up in just surviving life that we forget that those little eyes and ears that we’re so busy taking care of are soaking everything up and making memories of the simplest things that they will carry into adulthood.

I’m happy to tell you that Samuel’s life took a turn for the better; he eventually went to live with his father and his new wife where he was loved and nurtured for the wonderful little boy that he was. He went on to become a strong, confident man with far more positive memories of his childhood than negative ones. I've learned a lot from meeting Samuel, now if I find myself snapping at a child, I think to myself, “Is this a memory that I want this child to carry with them for the rest of their lives?”

Just a Quickie

I just couldn't resist telling you all about this. The other morning I went to check emails and my mouse wasn't working. I mentioned it to Brad whom was standing next to me and he suggested that I check if is dirty. I turned it over to find this:

Awwww. I'm a lucky woman ❤❤❤❤

Losing my Independence

For me the hardest thing to deal with at the moment is losing my independence. I am - or was - a supremely independent woman, that's how my mum raised me, I've travelled by myself, lived alone and financially taken care of myself for years, however now I sometimes can no longer do the simplest things by myself. Take housework, once upon a time I hated it and each push of the vacuum cleaner was done with a vile mutter under my breath, now I would give anything to physically be able to pick up my vacuum cleaner and clean the floor when I saw that it needed doing. Or to be able to put a load of washing on when I notice that its piling up. But no, now Brad has to do those things because I physically I am not capable anymore; there is no way I can carry a basket full of clothes downstairs (my house is high set) and then walk back up again, its just too much for me anymore. And I HATE it. I hate not being able to do these things more than I hated doing them once upon a time.

This loss of independence covers other areas too, like personal care. Having a shower is a huge energy zap to me, I don't quite know why, but all I know is that by the time I get into the shower, with my oxygen on, and then lather up I'm exhausted so trying to hold my arms above my head to wash my hair is impossible so I lean over the bath tub and Brad washes it for me then blow dries it afterwards. On a really bad day I have trouble drying myself and then dressing but on a good day I can do all of this but really, really slowly. A ten minute shower now takes me around 40 minutes.

Cooking is something that you wouldn't think could be that taxing right? Wrong! Even though we bought a fold up stool that I sit on at the kitchen bench I find preparing a meal as tiring as a 3km fun run I used to do for fun! As I said earlier, my house is high set, it has 20 stairs front and back and those stairs are incredibly difficult for me to undertake. Of course its not so bad going down them but coming up them, ughhhh. Lots of times Brad carries me. Those stairs scare me to be honest, because I know that the day will come when I won't be able to walk up them even at a snails pace and I will solely be dependent on someone or something else to get into my own home. And that is a very scary thought.

The Most Unromantic Night of my Life - The Night Brad Proposed

The night Brad proposed to me, what a night it was! He had picked up the ring from the jeweller during the week while I was still in hospital but he was under strict instructions to not propose until I was home again. I was discharged on Friday morning and guessing that tonight would be the night, I planned a special dinner to be proposed over, lol. Dinner. Well, in short, I ruined every single aspect of the meal. I put the vegetables in the oven then went to have a bath and shave my legs. A good deal of time later Brad called out that something was burning and we discovered that the vegetables were charcoal. Next came the chicken breasts in creamy green peppercorn sauce. I am told that I must have had the heat up too high because when I came into the kitchen to check on my delicious delights, the cream had split the curds from the whey and they had splattered onto the inside of the glass frying pan lid, looking very much like white diarrhoea, and the very overcooked chicken fillets were floating in whitish water. Gross.

Ever my hero, Brad proceeded to cut the burned bits off the vegetables and discreetly tipped the sauce into the sink while I went and got dressed up for the big moment. I came out of the bedroom looking ravishing in a lovely dress, hair done, jewellery on - that would compliment my soon-to-be engagement ring of course, only to find Brad had turned on the tv and we were watching "Gene Simmons Family Jewels" as we ate. Oh dear. We struggled our way through dinner when my stomach started making some very unladylike sounds. I had had a colonoscpy the day before and the nurse told me that I may still be a "little loose" the next day. Since I had poo'ed approximately every meal I'd eaten since my teens, I thought I was fine. Little did I know because my stomach got louder and louder and louder. Finally I ran to the toilet and proceeded to make some of the most un-godly sounds that have ever been emitted from a human being before. I was in there ages and when I finally came out Brad was standing there waiting for me because he was worried. I looked him in the eye and said, "Don't go in there."

Next Brad suggested we go for a family walk. Sure, why not? I was now as bloated as a 6 month pregnant woman and felt horrid but who could resist a family walk? I got changed into my oldest, most baggy trackie pants and a tshirt and we strolled to the park with Brad's skipping ropes he uses in his workouts. I say strolled to be kind to myself, I walk at a snails pace but not out of choice. We get to the park and go to the half basketball court and start mucking around skipping. Well, the best way to describe it is to say that Brad was showing off; I would do 2 skips then have a coughing fit but Brad would do 12 before he stopped. After a while I decided to show him how well I could skip so I got up and started to skip like the blazers. I was feeling pretty good, we were in a park on one of the busiest main roads of Brisbane with hundreds of cars whizzing past and I was skipping like a champion. Then it happened. My tracksuit pants fell down to my ankles. OMG. I was standing there in my knickers, tshirt and shoes. We both went hysterical laughing as I scrambled to pull my pants back up and we laughed ourselves silly. Which of course made me have a coughing fit and cough and cough and cough until I vomited up all of my dinner. It was then, sitting in the middle of the half basketball court, having just vomited, that Brad decided to do the deed. He took me in his arms, said many beautiful things then asked, "Will you be mine forever?" I gave an ecstatic yes then he took the ring out of his pocket and slipped it on my finger.

So there ladies and gentlemen, is the story of how Brad and I got engaged. A ruined dinner, some serious bowel upset, losing my pants and vomiting, it had it all. And I love him for every second.


love
K

Public Speaking - My Passion

People that know me know that my absolute passion in life is public speaking. I LOVE it. I discovered my life's passion when I attended my very first Toastmasters meeting. If you've never heard of Toastmasters, it is quite simply the best, most cost affective way to learn public speaking and leadership skills hands down. I first heard about Toastmasters in "How to Win Friends and Influence People" which I read years ago. Back then I had zero self worth and nil self esteem so I couldn't bring myself to attend a meeting however the name always remained in my head. Many years and a failed marriage later when I had decided to make my life into what I wanted it to be rather than what circumstances had shaped it to be, I attended my first Toastmasters meeting. I remember walking up on stage and looking out at the small audience, maybe 8 people, I started to speak and I just knew, it felt like I belong on a stage speaking. Not singing, not dancing, but speaking from the heart.

I was extremely lucky to have an incredible mentor in my home club, Margaret, whom is still a close friend of mine today. She is wise and compassionate and tactful and she always knows the right thing to say. Early on I learned that in Toastmasters there is no greater achievement than to become World Champion of Public speaking, a competition that is held each year, usually in America, that hundreds of Toastmasters compete in "heats" to take part in. And that ladies and gentlemen, is my ultimate goal. To become World Champion of Public Speaking. Unfortunately I can't even get a sentence out now without becoming breathless, let alone a 5-7 minute speech so I have had to stop attending meetings however I fully intend to re-commence after transplant.

Toastmasters has done more for me than just teach me how to give a speech, it has helped develop my self confidence and self worth as well as given me the opportunity to learn and grow in ways that I would have never thought possible before. And the friendships I have made will be with me for the rest of my life as well. A couple of years ago I was honoured to be asked to give an evaluation of a speech given by the then head of Toastmasters International, a lovely gentleman named Gary. I gave this speech to the largest audience I had ever spoken in front of, around 300 people and I absolutely loved it! It is the highlight of my Toastmasters experience to date.

So if you are looking for a supportive, cost affective way to improve the way you communicate with people, I highly recommend Toastmasters as the way to do it. Perhaps you'll be there when I become World Champion of Public Speaking.

The Top Ten Ways I Know I'm a CF

1. I can swallow 30 tablets at once

2. I can fit into childrens clothes

3. The doctors ask me what antibiotics I would like this time

4. I can make up an iv antibiotic and deliver it to myself in my sleep

5. Every time I laugh really big, a huge coughing fit follows and I spew up my last meal

6. I get evil looks from old people for using a disabled parking space

7. I know which vein is good for getting blood out of

8. I walk at the pace of an 80 year old and so hunched over I can lick my knees

9. I start laughing hysterically when someone says they are sooooooo sick with a cold

10. I have tried all the weight gain supplements out there and hate them all

The Insidious Nature of CF

Something that has really struck me lately is the insidious nature of cf. I will be sitting at home, feeling fine, breathing ok and I will think to myself "Perhaps I don't really need a transplant, living like this is not so bad, maybe I was too hasty going on the list." Then approximately 2.3 seconds later I will have a massive coughing fit, vomit my last meal up and desperately grab for my oxygen, taking 10 minutes to breathe properley again. That's when I remember, "Oh yeah, this is why I'm on the transplant list." This disease affects every single part of your life, everything has to be altered in some way to accommodate this illness and not always in the obvious ways. Brad and I were talking last night about going on a day trip to Hervey Bay to see some friends. Ok so I'd have to take my portable oxygen cylinder and my tablets with me, done, right? Well not really, Hervey Bay is a 3 1/2 hour drive from Brisbane so as I'm expected to be at the hospital within 30 minutes of getting a call about lungs, I'd have to let the transplant co-ordinator know where I'll be. One oxygen cylinder won't be enough so I'll have to take two so that means I won't have enough for the rest of the fortnight so I'll have to order more. A big trip like that will really exhaust me so I'll sleep in the car and I get reflux if I don't sleep sitting up so I'll have to bring a pillow, it just never ends. Look, I know these aren't earth shatteringly huge things to cope with, but what I'm saying is to apply that bit of extra consideration and annoyance to every single aspect of a life. Its downright exhausting.

Far from being an isolating illness, cf also affects your family. I remember last year when my cf doctor told me that if I keep declining at the same rate I had been, I would only have 2 years left to live and I agreed to the referral to the transplant clinic; I decided to tell my immediate family when we were all together to save repeating it all over and over again. So we have a family tradition of taking a night time drive to the beach, buying fish & chips and eating them at a picnic table while enjoying the view and the breeze. Boy, do I know how to kill a buzz! We had all been happy and chatty then I gave them my news and instantly my dad started to cry and my sister started sobbing. Crikey, I had never thought that my sister thought much of me but she was sobbing like she was heart broken. My incredible mummy, whom has been to hell and back in her own life, sat there and started asking questions about what I needed them to do, when will the testing start etc. It was my little sister that really got to me; there is 11 years between us, she is only 25, and I had honestly thought that she wasn't a huge fan of mine, just a duty-bound "I love you" sister, but it turns out that she really loves me and was terrified at the thought of losing me. Wow.

So cf affects you, your family, your work, your friends, every part of your life, it sinks its insidious talons into. And it does this. Every. Single. Day.

love
K

What is Marriage?

It has always fascinated me when a man and woman become engaged and suddenly their whole lives are taken up with planning the wedding then they find themselves married and have no idea how to be a husband and wife to each other. Even though my ex-husband Michael and I got engaged when I was 16 and he was 17, we talked extensively about what kind of marriage we wanted to have and this guided us through all the wedding preparation dramas. The decision to spend our lives together was quite a long one for Brad and I, mostly because of my personal issues and my health but none the less we have still discussed in detail how we want our union to be, which will be very different from the one that Michael and I had simply because I am a completely different person now. Brad and I know what we want our marriage to feel like, we know that things will change and we know that we are each others first priority, first time and every time.

I personally have found that you become truly married over time, through all the bouts of diarrhoea and arguments over the remote, and the visiting in-laws driving you crazy, the small and large moments that you could never plan for, but you find yourselves in none the less and you get through them, together. This is the making of a marriage, the making of a husband, the making of a wife. I know that when I'm laying in a hospital bed after I've had the transplant and Brad isn't there to visit me yet, I won't be thinking about the colour of the ribbons on the handle of the knife used to cut the cake at our wedding. I will remember that Brad has never let me down when he tells me he will do something. I will remember that Brad likes to buy me a treatie to make me smile one his way to the hospital, a packet of lollies, a chocolate bar or a magazine. I will remember that Brad will sit through an entire episode of The Bold and the Beautiful when I'm in hospital, even though he hates it but he knows that I love the show.

Brad and I have gone through some hard times and I remember at one particularly emotional junction I was asking myself what did I want in my partner? My answer was simply this: I need my partner to be my soft place when I fall. That's what I need in my husband as well. And Brad always has been that for me, whether we were just friends before we dated, or broken up and apart from each other, Brad has never wavered in supporting me and plain caring about me. Recently we got in the car to go out and before he started the car, Brad turned to me, kissed my hand and looked into my eyes. He told me that he just wanted me to know that even though lots has happened in our lives, he still wants to date me and hang out with me and be with me just as much as he did that first time we went rock climbing together.

How lucky am I? Not only do I get to live my life with my best friend and lover, but I get to marry him as well. I am the luckiest girl in the world.
love
K

My Engagement Ring

Today I attended my Aunty Toni's funeral so it's been an emotionally heavy day; therefore I would like to tell you about something uplifting, my engagement ring. Brad and I knew we wanted to get engaged and decided to have our ring custom made in order to incorporate stones that we already had. I did lots of research into styles so I knew exactly what I wanted when we went to the jeweler. Our jeweller was recommended to us by my boss Loretta as being top quality and very reasonably priced. Loretta has a particularly beautiful ring that I have always admired so we were happy to trust her recommendation and then when we met the jeweller we were impressed by his wealth of knowledge and experience and willingness to make what we wanted a reality.

Brad first proposed to me when we had only been seeing each other 6 months; we were not ready for an engagement so I said no, however we stayed together as a couple. The ring he proposed with was from Tiffany's, a fact that gives me an untold amount of pleasure. The fact that a man not only wanted to marry me but also thought I was worthy of a Tiffany's ring, wow. The ring was beautiful, it was a quarter carat set in a very delicate platinum band. Stunning. But just not me. I have chunky man-knuckles therefore rings with thin, delicate bands just get lost on my man-hands so while the ring was beautiful, it just didn't suit my hand. I am into feng shui and in my research I learned that the optimum shape for an engagement ring is the feng shui bagua so that's the shape I decided to go with. I am also into numerology so I wanted the number of diamonds in the ring to add up to 6, which means love. Altogether we had the Tiffany's ring, my parents eternity ring and 4 other rings with small diamonds that I had been given over the years but didn't wear anymore.

We really liked that the jeweller was an older man with many years of experience; we had spoken with another whom was young, in his 20's and while he was lovely, he didn't have any creative solutions to the few very minor issues we had. The guy we went with was roughly the same price but his experience and the suggestions he made were priceless to us. In the first design the ring had a total of 19 diamonds, which is a 1 in numerology, not good for a marriage. We had diamonds left over so the jeweller placed 5 more on the inside of the ring where they will never be seen but I know they are there! Most people think I'm crazy but I've been divorced once and I don't every intend to divorce again so if I can do one little tiny thing to enhance my marriage then I'll do it! I also really love art deco jewelry so I wanted my ring to have a classic, vintage feel to it. I decided to go with white gold instead of my usual yellow as white gold makes the diamonds sparkle brighter.

All up my engagement ring is 11mm across, it has 24 diamonds set in white gold and all edges are mill grain set, which are little bumps that add to the art deco feel of the ring. Unfortunately I don't know the total diamond weight, I have to get a valuation done to find that out. Originally my wedding and eternity rings was going to be a straight channel set white gold bands to sit under the raised basket but now I'm not so sure, I'm thinking of having them shaped so they go around the engagement ring bagua, like the picture below. I think it will make the whole thing look more substantial, what do you think? If anyone has any thoughts please let me know.

love

K

How Embarrassment

I’ve just re-read my last post and I am so embarrassed at how “Poor me” it sounded; I must have come across as a spoiled twat to those whom live with chronic pain and discomfort every day. That wasn’t my intention, to sound like a spoiled twat; I was just trying to express my experience of cf, which is the whole point of my blog J

Ok now, so back to me…………lol. A beloved aunt of mine passed away of lung cancer this week and it has turned my mind back to the whole “death-dying-I’m dying” thing. Which is never too far from my mind anyway to be honest. I was quite scared of dying until I had an incredible conversation with a cf physiotherapist at the hospital last month when I was an inpatient. I asked her what it is like to die of cf and she told me that there are two very different scenarios. Scenario one is when there is still hope for a transplant, you’re just on your last legs waiting for one. This is the harrowing scenario as the person is usually an inpatient and they can’t be given too much pain medication or sedation because the transplant team needs them to be conscious and still aware for if the lungs come in. That is apparently quite distressing because you are quite literally on deaths door and each breath is agony and you have to stay like that just in case lungs come in. The second scenario is when a transplant is not an option; in that case you have to decide if you would like to pass away in hospital, at home or in a hospice. This is apparently very peaceful as you are given all the lovely pain medication and sedation that you need and you just eventually drift off, surrounded by family and friends if you wish. Hearing these two scenarios gave me a real sense of peace, knowing that it doesn’t necessarily have to be traumatic and horrible if you chose for it not to be.

My choice is to pass away at home with my dog Teddy by my side. Being near Teddy just makes me feel good; he has that affect on me. I have told all of my family and Brad of course and they are supportive of my wishes. The main reason that I don’t want to die in a hospital is that I know it is usually a drawn out process over a number of weeks if not months and I don’t want my family to have to stress about driving to the hospital and paying for parking while they visit me. The cost of parking at the Prince Charles is disgraceful and even now because I am in hospital so often I feel terribly guilty at the cost of coming up to visit me. I also want to live my last days at home because I want my friends and family to know that they can come and see me whenever they want to, day or night, and not be confined by visiting hours. My aunt passed away in a palliative care unit and our family were treated terribly; they acted like we were a nuisance and were extremely rude to most of us. My aunt told me that they were unpleasant to her when she was by herself as well.

So those are my wishes and now the whole world knows them! At home with Teddy next to me………….hmmm, that means I have to actually train Teddy to do what he’s told, not an easy task, its going to be interesting!

Love
K

Yesterday seems so far away

Good morning everyone, I felt yuk all day yesterday but I feel much better today. Something I wasn't expecting with this whole cf-terminal-illness thing is the pain. I've had pluretic pain before when I've had an infection, that's where the pluretic fluid surrounding your lungs gets infected and gosh does it hurt when you cough or breathe in, both of which you do both pretty much constantly when you've got a chest infection :-) This pain is different, its like my lungs are so full of mucus and scar tissue that they area heavy and they ache from the weight they carry and that's the pain I feel, a deep, deep ache in my lungs that sometimes make me cry out in pain and sometimes makes me swear in annoyance! I have pain killers but I feel the pain so often that I am very wary of taking the pain killers because of the possibility of damaging any of my other organs, I can't afford for anything else to wrong before I get my new lungs.

Anyhoo I had a nap yesterday and it settled down and I feel much better after a good night sleep next to Brad. I've noticed lately that my beautiful fiance can't settle in to sleep at night if I'm not settled. If I wake up to a coughing fit, he stirs and can't rest until I'm ok again, even if I just turn over in bed he turns over as well, we are so in sync with each other. I've never been like that with anyone else and I must say that it contributes to how close we already are.

Sorry its a short post today but I've got lots to do, my cousin is getting married in a few weeks and the kitchen tea for his fiancee is tomorrow so I've got to buy her a gift.

love
K

The Question of God

Recently I was chatting to a friend when the subject of religious faith came up. The person commented that they had a hard time in believing in God when they looked at someone like me and saw what I go through. I was incredulous at this and told them so. How could they look at me and not believe in God? How could anyone whom knew me not see how blessed I am each and every day? I am 36 years old; when I was born my mummy was told to not get too close to me as I would probably be dead within a few weeks. She is a stubborn woman my mum and it is because of her care and love that I am still alive today. How could anyone not think that God had a hand in keeping me alive despite the odds?

Whilst in hospital last year I met a 19 year old girl whom had just gotten a transplant a few weeks before. She was very sweet and lovely and we chatted for quite a while. She told me all about her life; she still lived with mum and dad and was trying to finish year 12 via distance education as she had missed so much school through hospital admissions that she had been unable to graduate. I asked if she had a boyfriend and she shyly said no, she had never dated anyone but there was a guy that she liked. It was so sweet and innocent and hopeful that I was left with a sense that this is what a second chance at life is supposed to be; giving a lovely young girl like this the chance to live a normal life. Unfortunately she passed away a few months later and I vividly remember her blushing as she told me about the guy that she liked. Now I know that divorcing isn’t something to brag about, not to me anyway, but I have been loved by 3 incredible men in my life; my husband then after our divorce a boyfriend and now my future husband Brad. And these are incredible men I’m talking about, not just “he’s a good guy” type, but it takes a special man to commit his heart and his life to being with someone with cf. The infections, the clinic visits, hell even the coughing fits during sex are enough to drive lesser men away! But I have been blessed to have experienced being loved by and loving 3 amazing men, how could God not have had a hand in that?

Then there’s my family; we are a normally dysfunctional family who get pissed at each other and bicker, but we all love each other fiercely. The motto in our family is: If you hurt one of us, you hurt all of us. I have the most gentle, loving step father know to man, Doug and my beautiful sister Nikki is pure sunshine in my life, she is one of my best friends. Then I have my extended family of auntys, uncles, cousins etc whom all love me as dearly as I love them.  My friends; well a few posts ago I talked about what I used to be like, those days of virtually no friends are well and truly over and I am so happy to say that I have many friends whom I would move mountains for and they are same for me too. How could God not exist when there are so many amazing people in my life?

Look, I’m not a particularly religious person. I strongly believe in God and I regard myself as more spiritual than religious, but how could anyone know me and doubt that God has blessed me with every step of my journey?

Love

K

Its not What You Know, Its Who You Know

The term “Its not what you know, its who you know” has really come true for me of late; there I was, stressing out of my mind because I couldn’t afford to not work yet working was driving me to an earlier grave. Unfortunately as Brad is starting up his own personal training business and working as well, he is unable to cover his own costs and my mortgage too so I thought that I had no option but to keep working until either I got the transplant or died waiting for it. Then I happened to be chatting to the amazing cf social worker, Anne from the Prince Charles Hospital. I explained my situation to her and she asked if I had any insurance through my superannuation. What???? Super was just something that I signed the form for when I first started my job and I haven’t thought of it since. I asked Brad to bring my latest members statement up to me in hospital and Anne and I looked it over, it turned out that as part of my superannuation I also had Death and Terminal Illness insurance and Income Protection insurance. WOW. I had no idea. Absolutely none.

 So currently my applications for Terminal Illness payout and Income Protection insurance are in the works and I am happy to say that my super fund, Hesta, have been nothing but wonderful. Each and every person I have spoken to has been the complete opposite of what I expected insurance personnel to be; I expected suspicious and nosey yet they have all been compassionate and caring. I can’t tell you how much that in itself has eased this path for me already. I have become a proudly independent woman so asking for help from a big organisation was a huge hurdle for me to work through. Once I get the payout I plan to get some work done to my house to get into saleable/rentable condition, just in case the shit hits the fan and I have to sell or rent and I shall live on the rest of the money.

My point is that if I hadn't of been chatting with Anne, I would never have found out what I was entitled to and my life would have ended even sooner because of the strain that working was placing on my body. So my lesson in this is: use all the support available for you to gather information, an innocent chat could wind up saving you a bundle or even adding years to you life, thanks Anne!

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

My morning routine

Good morning everyone, I hope you all slept well, I certainly did. As well as I could anyway with a nasogastric feed tube in my nose and taped to my face and oxygen prongs up my nose as well. Ah, what a picture of seduction each night I am. When I came out of hospital this time I was ready for bed with all tubes in place, I looked at myself in the mirror and started to cry. Brad wanted to "celebrate" my homecoming and I looked at him and said, "Why would you want to have sex with me?" He took my face in his hands, kissed me and said, "You are beautiful" and I could see that he felt that way. It was so beautiful and so very typical of Brad.

So I begin my day by downing around 15 tablets in one go, pure skill I know, with my favourite drink, Glucolyte. Others pay for sports drinks yet I get the powdered satchets from the hospital, all souped up with salt, sugar and extra vitamins and minerals the us cf's lack and I mix it with water and drink it during the day. Dehydration is a huge issue for cf's as it causes our already thick, sticky mucus to become even more so and become harder to bring up which causes all sorts. So it is majorly important that I stay hydrated so I drink glucolyte religiously. At first I hated it, I used to vomit at the taste, a kind of salty lemon flavour. But now after years of drinking it I love it, but only when its icy cold. Room temperature and I start dry retching again, burk!

Now its time to nebulise! I nebulise ventolin to soothe my airways and this takes around 10 - 15 minutes, generally I do this while I check my emails. After I will do my physio, I have a device called an acapella, which I breath into. It vibrates the air back into my lungs and simultaneously helps to hold my airways open and this moves the mucus from my lungs then I cough and spit it out. I am supposed to do this every single day without fail but some days I start and just don't bring anything up so I just use the acapella when some mucus is lodged and I can feel it yet can't get it up myself through breathing techniques. Exercise is vital in cf, it is basically another form of physio and I get an enormous workout just walking up my front steps, there are 20 of them! When I'm really not up to it Brad carries me upstairs and I kiss him once for each step, that's our payment system!

The picture above is my everyday use tablets organisation. Each month I get my medication from the hospital and I have 4 of the blue and white tablet organisers. I put an entire days worth of tablets in each container, separated into am and pm and the compartments snap apart so I can take it with me in my handbag if I go out. I also have to monitor my blood sugar levels which is in the black rectangular bag and the basket also contains the stuff I need to use when putting the nasogastric feed tube in at night, such as litmus paper, tissues. I am a horribly lazy person and I have discovered over the years that if something is not within arms reach of me then I just won't use it, therefore I keep this basket on the dining table and can grab the tablets I need instantly.

love
K

On Thursday 9 February 2012 I was placed on the list for a double lung transplant. Having being diagnosed with cystic fibrosis (cf) at 6 weeks old, I have always known that I would never make old bones however the swiftness that my health has deteriorated has overwhelmed me and my head is still spinning somewhat.
I began working as a switchboard co-ordinator 5 years ago this month and when I started my job I was full of health and happiness, ready to start a new life for myself. I had just ended my marriage and had decided to create the life that I have always wanted rather than settle for the life that I had found myself in; marriage to a wonderful man but feeling more like his mother than his lover, working only one day a week just for pocket money and just a couple of friends because I was supremely shy and didn't make friends easily. Within the space of a few months I found myself in a new job that I loved with huge responsibilities, proudly becoming a single homeowner as I was able to buy my ex husbands share of our marital home and meeting and laughing with new people everyday.
I LOVED my life, there were no two ways about it. I LOVED it. I loved whom I worked with, I loved my independence and I loved the large circle of friends that I established because for the first time in my life, I discovered that people actually like me! Yes! They like me for who I am; silly, funny and dorky all rolled into one. And did I party. I had met my ex-husband and become engaged when I was 16 and Michael was 17 then we married at 21 therefore we never really experienced the party lifestyle that our peers did. I found myself in the wonderful position of being free to party and earning the money to fund it as well, yay!
Unfortunately a few years down the track I began an increase in hospital admissions with chest infection and my lung function started to decline and not recover even after weeks of intensive iv antibiotics. In my last admission I was given the news that if my lung function continues to drop at the same rate that it has been, I most probably have around 12 months left to live. Since March 2011 I had been undergoing assessment for transplant and I was told that because I was so underweight I probably wouldn't survive the surgery therefore they would not place me on the list until I was doing nasogastric feeds at night and I had put on weight. Therefore I commenced sticking a tube up my nose and down my throat, hooking up to a machine and being fed a ultra-calorie dense solution overnight. Thank goodness it worked and I put on 4 kilos in a week and I was then placed on the transplant list.
With cystic fibrosis, the body has to work so hard to just breath that it uses up all the body's energy just to take a breath and as the lungs become more and more diseased, they give off toxins which have an appetite suppressant affect on the body. Therefore I'm virtually never hungry and have to remember to eat. I was told that I would have to eat the same as a heavy weight boxer to keep up with the calorie requirements through just food. Up until a few weeks ago I had been working but sometimes I wasn't even up to driving to work so my fiancee Brad would drive me and pick me up. I made one of the hardest decision in my life to resign a few weeks ago and I miss my work and work family like crazy! I worked with an amazing group of women and there is not a day that goes past that I don't think of them.
So my goal now is to just stay alive and well enough to be able to undergo the transplant when I get the call. My days consist of physio treatments, being on oxygen, and naps with my incredible fiancee Brad doing all of the cooking, washing and housework. My gut tells me that I will only have to wait 6 - 8 months for lungs but the conservative estimate from the transplant team is 12 - 18 months.
Oh, and my beloved puppy dog Teddy will be laying next to me this whole journey!
love
K