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!! 



  1. Hi Gen,

    Glad that you're generally doing great. I have CF too and as of 8/16 I'm listed for a dbl lung tx. You provide great information for those of us who will soon follow. I love all the details.

    I do wish you would post more photos or videos of Andy. They don't need to be new. Since he's a large part of your healing process it seems like he should rate some face time. What do think?

    A reader from California

  2. Hi Barbara!! I'm so glad to hear you are finding my chit chat on here useful to your journey. I do hope you are not waiting too long for your new lungs. Are you sure you want to see photo's of Andy? HAHAHAHA!! I have so many, you will regret that you asked!! lol...There will be plenty of course once I start riding again, but yes I can post some favourites from the past for you no worries!! Take care :)

  3. Aaaah, Gen nice to hear the progress. You are right about the sugar. I like my sweets to but must watch them.
    You are doing great...keep up the good work.