Monday, August 30, 2010

Pictures of Andy and I through the years


Today was my horse's 24th birthday. For those who don't know much about Andy and I, I've had Andy since he was 2 and a half.  I was about 14 when Andy came into my life.  We have grown up together and he has been the most wonderful companion.  Years of competitions has led us to journeys all over Victoria and competing in different disciplines.

As my health deteriorated, Andy was the perfect horse - with his lovely temperament, he didn't need a lot of work and I could still take him to comps easily.  He is easy to float so it was no hassle when I wanted to go home to Mum and Dads and have a holiday.  He is easy to handle and Mum and Dad can do his rugs and feed him confidently or even float him themselves when I wasn't well enough to take care of him.

Other people have ridden and competed with him when I wasn't well enough anymore to do it myself, and most recently a lovely lady called Kate has been keeping him fit until I can begin riding him again....which will be in about a months time, when he returns to his agistment in Melbourne. Cannot WAIT! :)

Andy loves people and other animals and it's just a joy being with this beautiful animal! :)

A reader has requested Andy pics, so how can I not oblige?  :)

First Gymkhana 1989

Jumping in Pony Club, 1991

1994, Echuca Show

Kyabram Gymkhana - Mum and us

More jumping - Pony Club Days!


2005 TTT HRCAV Showing Championships

2007 Mentone CT Comp day. Brother Mike, Andy and I

2006 HRCAV TTT Showing Championships

Andy and Gen working out at Andy's agistment, 2004 ( I know, the hands, such a bad habit of mine!)

2008 Melbourne Royal Show

Dear friend Mel competing on Andy at the 2007 TTT HRCAV Championships.

2002 HRCAV Combined Training Championships. Won the teams and my section!

Giving Poppy Mason a ride!

Hanging out in Bamawm with Grandma and Grandad. January 2006

2008 Doongala HRCAV Horse Show. Photo taken by Julie Wilson.
Julie's website is

Barastoc Show, 2008
Andy meets himself - Sculpture of Andy by Karen Grigson.

Gen and Andy, May 2009

At mum and dads swimming in the channel. Gen, Andy, Oscar the dog and niece Stephy. Christmas 2009

Melanie Wu riding Andy in the Seniors Class at Barastoc 2010
Photo by Suzanne Coutanceau

Saturday, August 28, 2010

Week 9 - 28th of August

I've reached a few milestones this past week.

On Monday I had a quick test to see if I'm fit to drive again. This involved a few questions, some upper body movements (ie to see if I can turn in the car comfortably to look for blind spots), and an eye test.

I was then told to wait a week for the letter of permission (that I carry with me until Victorian Roads has the official letter too), and I got that on Friday, so I'm now free to drive...wonderful. :)

This past week I also reached week 7 of my gym rehab - at the start of this gym programme (ie week 1) you do a 6 minute walk test to find out how far you can go in 6 minutes. You go up and down the corridor that leads to the gym.  I got about 520 metres by memory - you do this test twice.  It also involves getting on a chair that is able to measure how much force you use with a leg muscle, going up as hard as you can (from the knee) - have a rest, then pressing down again.  You repeat this 6 times.

You repeat this at 7 weeks. I improved my 6 minute walk test - the first time I got 700 metres, and the second time I got 715 metres. And I'm told this is the ladies record! So I was pretty chuffed about that!!

I'm doing this as part of a study too - some patients are doing only 7 weeks in total - the other group are doing 14 weeks. Whether you're part of a study or not, they'll still do 6 minute walk tests to assess your fitness at the beginning and end of your gym rehabilitation. You also do these tests as part of your lung transplant pre assessment.

Other issues

My tacro is still being a pain and it's either too low or too high and my kidney function (creatinine levels) are still too high - but they have been on their way down as the tacro dose was lowered.  So I'm still having very regular blood tests keeping on eye on this and no doubt more tacro dose adjustments will be made.

My appetite has settled down and I'm no longer starving all the time. I still need to eat regularly, eating low fat and low GI and am still experimenting with certain foods to see how my glucose levels are. 


A few weeks ago I had another bronch and the results were great again with no rejection. I still have a bit of gunk surrounding the join of my old tube to new tube of the lungs, and am still treating that with an anti-viral medication as I have aspergillus.

Alternative therapies

To help with my organ function, insomnia, reflux, muscle fatigue, and the last bit of flem, I have been using acupressure and essential oils.   In the mornings I massage my legs, my feet and my chest after I've had a shower. At night I do the same. And sometimes I have a foot bath with oils in them, to help me sleep.  Essential oils all have different properties and specific things that they work on. I used to use them a lot in years gone by too.  When my lung function got very low, I felt that they were a bit much for my lungs so I stopped using them.  So it's nice to be using them again.  I don't use grapefruit at all as that is contraindicated against anti-rejection medication as a food to eat or juice to drink so I steer clear of it as an oil too.


The one (and only!) good thing about diabetes is that it makes you watch your sugar load. We all love sugar, but if you can give it up, it is much better for you. It is quite literally a nasty poison for your body and affects your immunity, so given that I'm now immune suppressed, I figure that it's a good in terms for my body to avoid it!!  Doesn't mean I still don't crave wagon wheels and snickers though...sniff....

I have found a good sugar alternative called Xylitol that doesn't affect my glucose levels at all.  I experimented with another sugar alternative first and even though it claimed it was diabetes friendly it sent my glucose levels right up even though I had such a small amount! Like anything, I am having this in moderation - I was just REALLY missing a sweet cup of tea!!!  So now at least I can. If your interested in reading more about this, the link is

Transplant Buddies

For anyone who is looking for some support online - I am a member of a great group that is American based and has a very active community. It not only covers lungs but all sorts of organs. So anyone pre or post transplant, or someone who would like to know more information, visit

Until next time!! 


Wednesday, August 11, 2010

Friday the 12th of August - 7 weeks post transplant.

Gidday everyone,

I've tried to update several times but it's tricky fitting everything in when you are making yourself have afternoon naps.  They do make the world of difference.  But it does limit the time in the day - it makes the days go very quickly!  I get too tired if I don't have them.  Those ten days straight of no sleep in hospital plus bad sleep since I am still catching up on, let alone everything else I have to do on a daily basis.

Lung function

I had my first lung function (LF) today and it was 62% fev 1.  Before transplant my LF it was 29% fev1.  So I'm very happy to have that for my first try! Over the next year to eighteen months this will keep improving. 

FEV1 means Forced Expiratory Volume in the first second. It is obtained during the spirometry and represents the amount of air that leaves the lung when all the effort is put into exhalation.

It is the main reading used to monitor CF lungs and also post transplant.  It is also used to monitor lung health in other lung diseases.  A 10% sudden drop or more in lung function post transplant, can indicate rejection. So it is a great way to monitor lung health and keep on eye on this. I have also been given a LF monitor to do at home morning and night. I have to do this and record the readings for about the first year.

It is very different doing lung function now I have no tightening of the airways and no mucus to contend with as I do it. Most people with CF have a good old coughing fit after doing each try. It is not pleasant and takes a lot out of you. 


Last week was a bit special (I've forgotten which day now!) as I got to jog for the first time on the treadmill.  I got pneumonia twice in 2004, and my lung function plummeted and marked a huge change in my quality of life.  I had gone from being able to jog for 50 minutes (with around 50% fev1) to not at all.  

I managed to jog  for 1 minute and it felt wonderful!! In preparation for this, I had been jogging on a mini trampoline for one minute starting this week.  Going on the trampoline takes the shock out of the landing for the sternum.  But my sternum seemed to cope fine!! I didn't realise Lou the physio, had that in store for me so soon. I thought it would be another week or so before attempting to jog.

Today I jogged for 2 minutes but in one minute intervals....I'm finding it harder on the muscles than on the lungs at the moment.


To my frustration, I had a lot of pain over the last 10 days or so but since my checkup on Monday things have improved again.  There were two reasons for this.

One issue has been reflux (caused by medication, mainly the prednisilone, it is very tough on the stomach), and the other was diarrhoea ...I had swapped reflux medication to help with the levels of my anti rejection medication tacrolimus- remember tacro has an optimum therapeutic level  - it's quite tricky getting the right dose, and I was either getting too low a reading, or too high.  You can add this particular reflux medication, to help RAISE the level of tacro, without actually having to add another tablet.  But it  failed on both pain tummy started after swapping the reflux medication.  At my appointment last Monday, we added the previous reflux medication I'd been on (Nexium)...and things have started to settle.  Then at the next appt, we added Nexium at night, as I was still waking up with stabbing pain around the same time each morning. 

The diarrhoea was caused by high levels of magnesium, as the anti rejection medication (prednisolone I think AGAIN ) is sucking out my now I'm on a different magnesium called Biomag, and already the diarrhoea has gone away.

I know I've gone into a lot of detail here, and probably a lot of people would think, ok way too much information Genevieve - but I have a lot of pre and post LT people reading this, so the detail is for their can just skip anything that involves bodily functions if you like! HAHA.

I'm still having blood tests for tacro, and it is still changing at this point in time. My blood tests also say that my kidneys are working extremely hard - again due to the medication. I've already been drinking a lot of water and herbal teas, so I'm making a big effort to drink more.  Ignoring this can lead to serious complications of the kidneys - including failing of the kidneys, needing dialisis, and then needing new the easiest thing to avoid that is to drink more!


It was Mum's 70th birthday last week and we had her party on the weekend. I decided to sing a song for Mum - I'd practice whenever she was not around!!  Singing of course is wonderful for working out the lungs.  My breath control is already hugely improved, but I still find my voice is a bit wobbly.

First of all I thought it was my support system (singers' term there!) and/or voice having to catch up with the new lungs/breath, but now I think it's the shakes which is affecting my whole body.  Again I have tacro to thank for that - constant trembling of my hands and body. The hands is the most noticeable - makes it very difficult to put on nail polish or put lipstick on! LOL!!

The singing - well it didn't work out like I thought! About 3 quarters of the way through the song, I was thinking about the words and connected for about 1 second and I lost it! Yes the tears came out!!  But ah well the family got to hear some!

Mum had a fabulous time at her party - we all did...great times! :)


I had a dreadful night last Friday night.   I was doing well until about 2am when I woke feeling quite weird. More shaky than usual, flushing and starving. I tested my sugars and they were 3.9 so I thought perhaps I was having a hypo - even though I have occasionally had a lower reading than that during the day and felt fine.  I had a jelly bean, and then made myself some toast.  I felt better and fell back to sleep.  A few hours later at 4am I woke with pain in my belly again (reflux?) and a horrible headache.  I tried to go on the computer, but I was too uncomfortable with the headache, so I just sat up for a while. Sitting up seems to help with the pain.  But the headache just stayed so I had some panadol, and eventually I fell back to sleep.

In retrospect I think having the jelly bean was too much - I just needed to eat something nice and heavy like the bread.  Having the jelly bean must have sent things sky high and given me the headache. I'm really not enjoying this aspect of post LT at all!  I had another hypo last night and had to get up and have some
I am super sensitive to ANY sugar at the moment - even some fruits with the natural sugars - so it's a bit of trial and error with meals that my mum and my sister are cooking for me.  I think I have my right insulin levels now, but foods with sugar (sometimes hard to find things that are "sugar free" )are still sending glucose levels over 8....levels are meant to be between 4 and 8. 


Our physio got us to write down our goals recently. 

I hope to be competing Andy in showing and dressage by 5 months which is January or so next year, and I cannot jump Andy until about 1 year post surgery.  

The slow part of all this is the sternum healing. Slow and steady certainly wins the race in these circumstances!  8 weeks post rewiring of my sternum (I'm only up to week 4) is when I can start riding Andy again, but only at the walk. I also have to get someone to do all the heavy lifting - so putting on the saddle and doing up the saddle I should avoid.

My other goal I'm looking forward to, is climbing a mountain called Mt Dromedary. My Nan used to live in a place called Wallaga Lake, near Bermagui, NSW.  It is a stunning place and we used to visit Nan every year when I was growing up. Nan moved to Victoria when it got too much to live on her own.  I miss this area a lot and haven't been back for a long time.  The beaches there are stunning and I just love the energy of the whole place. I have climbed Mt Drom twice, and I would like to climb it again.  So that is my other goal for next year - I've already lined up my mum and dad to come with me, and my brother and his wife want to join me too.


Since my glucose levels are getting better and my appetite is still ravenous - I put on weight rather suddenly last week! It coincided with jogging and I think putting on a lot of muscle mass.

Before my lungs got bad, my weight was never an issue.  It was the unhealthy lungs that caused me to use up a lot of energy and not put on weight.  I actually had to watch my weight in my twenties! 

Now that my lungs are healthier, the weight is going on for the first time in 10 years! It's a very strange feeling seeing my body change so quickly!! So I'm already having to watch what I eat, as well as eating meals to keep me full to keep the sugars happy and not feel like I'm starving! It's a very tricky balance.  The prednisolone does NOT help with this either - as it's like the switch to tell you you've had enough food, does not happen!!


My sister Di has taken over as my carer for 2 weeks to give Mum a break.  So we are having a lovely time catching up. 

Crazy Hair Day

A lovely lady who is riding Andy for me, organised a Crazy Hair Day at her school  where she works to raise money for Cystic Fibrosis.  They raised about $900 I believe, and I was so impressed with their effort....

Thankyou to all who particpated in that to help CF. :)

                                                                         Mum and I at her party.