My Mt Isa Adventure

I just returned from visiting one of my best friends in the world, Lou Lou, in Mt Isa. Our first point of call was the local country wear store where I bought my cool cowboy hat, I love it! I wore it the whole time and felt like an authentic cowgirl :-)

Mt Isa was great, what a terrific atmosphere of community in that town. It is very small but its size was more than made up for by the warmth and welcoming manner of the townspeople. Lou Lou seems to know every second person that she sees in the street so I met quite a few people and every single one of them were lovely. Mt Isa was about what I expected, quiet and down-to-earth with some very beautiful spots such as the lake and the Granite Rocks. We had a bonfire at the Granite Rocks on Saturday night and the stars were unbelievably beautiful, so clear and bright that I felt like I could reach out and touch one; breath taking. The other thing I really liked was Peacock Park, a family picnic area where stunning peacocks wander around freely all about the place. Fantastic.

All around I had a terrific weekend and it was so wonderful to catch up with one of my best friends in the world. At one point we were ruminating at how much she and I had both matured since we used to go out hard core partying and drinking; who would have ever thought we would both be content to sit by a picturesque lake eating lunch and sipping coffee rather than dancing on the tables in a club at 3.00 in the morning?

Ah..........growing up is an interesting thing.

Love

Kylie

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

CF Clinic

I thought I'd describe for you all what it means to go to clinic. I have been going to clinic every two weeks since I last came out of hospital but thankfully I will be going monthly from now on. Going to clinic isn't so bad, my amazing mummy comes with me but it works out expensive because you have to pay for parking. Do not get me started on the lack of ethics it takes to charge people to park in a hospital where they have no choice but to go. Profiting from othere people loss is what I call it! Anyhoo, anyhoo.

So we get to the Prince Charles Hospital and there is a "terrific" new check in system that in reality takes 3 times longer to do what used to take a few minutes. After checking in you wait until your number gets called to the desk then you are told to get your height and weight done by the volunteers. For those interested I am 162cm tall and 47.9kgs. Then you line up again to be told to go the breathers. So upstairs mummy and I go where we wait in line with a waiting room full of people to be called in one by one. Having a breathing test means breathing into a computerised machine in a certain way and at certain speeds; this measures how much air your lungs can hold, therefore calculating how much air your lungs can't hold probably due to damage or infection. This is all documented in your chart, a file folder with all notes, test results etc that the hospital holds and you are also asked to provide a sputum sample in a jar. I have plenty to spare so I'm never stingy with providing sputum samples!

Then we go downstairs again and line up to give the packet containing my chart and sputum sample to the admin lady then we make ourselves comfortable in the clinic waiting area until we are called in. You rarely have to wait more than a few minutes because the cf nurses are so on top of everything and they know who to expect at clinic therefore they keep an eye out for who is in the waiting room. Mummy and I are then walked into an office and one by one we see each of the cf team to discuss a particular area of my care. For instance this Thursday I saw Angela the dietitian because I have been having trouble with my nasogastric feeds. Then I saw Robyn the physiotherapist to discuss my oxygen generator and exercise tolerance. Next came Anne the social worker to talk about some insurance stuff and then finally my favourite doctor in the world, my Dr Phil. I have been seeing Phil for around 16 years and I couldn't possibly be in better hands. A couple of times I have contacted the clinic urgently, so ill I thought I was going to die and after admitting me I have bounced back, all under the guidance of Phil. I know that I owe my life to him and the rest of the cf team, I don't doubt that for one second.

After seeing Phil mummy and I put my prescription for my medications into the pharmacy, there are around 25 medications for a month so they will take over an hour for them to be ready. Lastly mummy and I go back upstairs again to see Vanessa, another incredible cf nurse, to get some more nasogastric feeding tubes then we go home. Phewww! I was going to say that it sounds worse than it actually is but I have been doing this on average every month for 36 years now so to some people it may be pretty yuk! Apparently when I was a little girl at the Children's Hospital other children would get bored waiting and start misbehaving and running about, but I was happy to just sit in my stroller and watch what everyone else was doing, mummy is very proud to tell everyone what a good little girl I always was.

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