6 Months Post LT

Hi everyone,

6 months has gone slowly and also quickly. 

Looking back I can honestly say the first 4 months or so were pretty awful. 

On one hand you're grateful, ecstatic and joyful that the operation was a success and that the lungs are liking their new body, but the lack of sleep, pain and medication side affects make it hard going.  All this while you're having to drag yourself off to gym and various medical appointments, even when you feel like crap.

But has it been worth it? Of course it has.  :)

A turning point around the 4 and a half months mark was having a change of insulin which is working much better for me, (no more morning hypos) and made a big difference in my energy levels. I have worked very hard with my diet and have cut out most sugars. Another motivation for this was because I was getting rather too porky for my liking, which was not helped by one of the medications making me insatiably hungry all the time!!  I'm at a weight I am comfortable with now though!  I still have treats of course, but I am basically all normal in the digestive part as far as putting on weight goes! I do really miss those daily snickers and/or chicken twisties......lol!!

I found some people rather dismissive about the unpleasant things that I had to deal with along the way - apparently as long as I was able to breathe, these other bumps were nothing of significance - in particular the diabetes. Diabetes is no walk in the park, and if not managed correctly, it can do much damage to your body.   So for anyone who has never been sick before, and comes across someone who is, and YOU ASK THEM how they are, really listen to them and have some compassion for what they are going through.  After all, you are the one who asked.....(on the other hand, they don't need two pages of dialogue, just a brief summary usually suffices...LMAO!!  If they want more detail, they will ask...if their eyes are getting glazed, you've talked too much.....:)) 

I do count my blessings I did not have diabetes beforehand - many CFers do, and it makes management of their CF all the harder.

For people who are waiting for a transplant and are interested in my current side affects - (and most of them are silly ones) - here you go.

- my freckles on my face and neck have gone out of control! I use sunscreen religiously so I'm wondering if this is medication related...

- lots of blond hair on my face - if I look like a gorilla in the next few years, don't be alarmed....

- bruise easily and take a long time to fade

- cramps in legs and feet

- still got the shakes from the tacro but not as bad and not all the time

- occasional swelling in legs and feet

- sleep is heaps better but I still usually wake about once a night - sometimes I fall back asleep straight away and other times I'm awake for about an hour or so.

- can't stand cold things to eat or drink. My teeth were never sensitive before the LT.

- still got the pred belly, double chin and puffer fish face, but not as bad as it was

- still have achy knee splints but much better than they were

- don't like bright light - rarely wore sunglasses, now wear them fairly regularly

- diabetes of course

I still have days or weeks where I get very tired and have to sleep in the afternoons, then suddenly I have a different energy burst and don't need the arvo kips.  I never deny myself sleep if I'm home, as it's just so important for your immune system and for healing.  I  only seem to sleep an hour and a half or so, then I literally feel all ready to go again, they are very energising!!

Lung wise I am still sitting at 73% FEV1.  The join in my right lung ( left as you look  at me) is being a bit of  a pain and is taking time to heal. It narrows when I laugh so I usually end up coughing! Minus flem of course, haha!!

I do have about one bit of flem that sits at the join and which I get up each day.  So I'm still on meds for that too.  Hopefully it will clear up one day!

We are still juggling the immuno suppressant medications in order to help my kidneys which are still not liking the tacro much.

Horseying Around

November 28th marked the exciting occasion of my first show.  My last one was around September, 2008. 

It was really wonderful to be able to bounce out of bed straight away, have some brecky and head off.  Usually by the time I got into the car, I was already worn out and ready to go back to bed!!

Mum was rather concerned at me hitching and unhitching the float with my sternum but it all went fine.  I did manage to get the float bogged as well, but like the legend that I am, I got it out too -hahaha!  It's time for me to start entering 4 wheel drive raffle competitions I think though!!

The following w'd, I had a 3 day horse show, for Andy's breed.  It's the Victorian All Welsh Show, and Andy is a Partbred Welsh. His daddy is a Welshie, and his mum was a Thoroughbred.

I had a friend ride Andy in the first event, as it involved jumping and I'm not allowed to jump for another 6 months.  I then returned the next day for a ridden class.  Unfortunately that week and weekend had been very humid and hot - and I was already feeling the effects in the ridden class. I felt dizzy at times and the sweat was pouring out of me!! As it was Andy!! Even getting ready each day was a hot affair.

When we went home after that event, I said to mum I don't think I can come again tomorrow, I'm worn out
from the heat!!  Even though I had drunk so much fluid, I had really bad cramps that night, and the next day did not feel well. I slept for most of the day. I felt better Monday but still not quite right, but by Tuesday I was all good again.

Unfortunately the day I couldn't go, there was a presentation to be made to me after my class from the President, in recognition of the transplant and me being able to ride Andy again.  It was a lovely gesture, and a real pity the weather was being such a pain!! One of the UK judges had to be hospitalised for dehydration, so I was not the only one affected by the heat.

My heat tolerance was dreadful before, I would avoid it like the plague. I am certainly much better now, but there is obviously still a bit of a limit to what I can handle!

I have many more horse events to come, and each time I know I will be marvelling at the ease of my breath, and the lack of coughing.  It still hits me daily of the miracle that happened to me on the 22nd of June, and how my life has changed so quickly and that I am a happy girl again. 

Picture of Gen and Andy - The 2010 Victorian All Welsh Show
Picture by Raelene Milvain

That last month or so leading up to my transplant, was the first time I could really feel I was dying.  It really affected me when my dad said a month or so after my transplant - "I knew you were in trouble when you just lay on the couch, and you didn't even have the strength to go and see Andy for 3 days after you got home". 

It is hard to describe this beautiful vitality I have coursing through my body - and you notice it so much because I have been without it for so many years.  That is why the simplest tasks that could be so mundane for someone else, are an absolute wonder for me.

I thank you for all your support and love throughout this time.  Please - can you spare a thought and prayer for my donor's family and friends, who will be having Christmas without her this year. 

Much love and blessings to you all for a safe and healthy Christmas.

If I'm fat after Christmas, it's because I ate all the of the gingerbread house!!

Love Genevieve

Saturday 9th October, Week 15 Post Transplant.

Gym

I feel like I have finished a term of school, because yesterday I finished up my last gym session.  I have really loved doing gym, but the driving to and fro is tiring and the outing generally eats up that whole day. So I'm looking forward to having more time to myself, and putting a bit of distance between the hospital and I.

I was rather chuffed when I managed to pull off the best distance anyone has ever done in a 6 minute walk test at the Alfred Gym!  At 7 weeks as you know, I got 715 metres - the women's record.  Well yesterday, 15 weeks post transplant, I pulled 780 metres, beating the blokes record by 30 metres!!  Our head physio said he was a 6 foot two rugby player, haha!!

The staff, in particular Louise Fuller, who is the head of the Pre and Post Transplant gym, are a wonderful group of dedicated people. Lou knows exactly how much exercise to give you each week - how much she can push you, and when she thinks you need to pull back.  She is full of zest for life and loves her patients achieving goals big and small, and always give a whoo hoo when you do something exciting!

We are so lucky to have her and all the staff who work there.  I will miss catching up with them and the patients and seeing how other patients progress.

The thing I noticed the most in gym, is that most patients are quiet to start off - mostly because you just feel so unwell and want to go back to bed!!  You don't feel great so your not that talkative, and also you don't know anyone. Eventually you start feeling better, and get familiar with your group (the education talks also help to break the ice) and you start talking more. Well the gym sessions get a lot longer!!   And Lou has to start being a teacher, and tell us off for not working!!   Hehehe.

Gen and Ranj - Ranj helped me get up for the first time after my operation.

Gen, Vedad (physio) and fellow transplant recipient, Chris.

Our wonderful Lou, Gen and Chris.

Chris and Gen holding the plank!

Phew - did it!

This lovely lady and I suspect we have the same donor (she received a heart).

Same day, near the same time op, and same blood group.

Horse Riding

Several weeks ago, I went home to mum and dads and had my first ride on Andy. Wow what a wonderful experience.  To be able to ride trot and canter again, without feeling like I'm underwater fighting for breath, was just fantastic.  Since then I have ridden about 5 or so times, and Andy is back now in Melbourne.

Gen and Andy - first ride.

The first few times, I got my dad to help with saddling up and such, just in case it was too soon for my sternum to be doing the girth up and such!  But I can do it all myself now, and weights (such as carrying heaving shopping bags) and mostly ok for me to carry now too. 

My sternum does feel completely solid now - though occasionally things still click or pop, which is surrounding tissues, tendons etc!  Once I realised it was that, and NOT my sternum, I stopped panicking! haha!!

I still find the smallest things amazing. Just being able to lead Andy, without having to constantly ask him to slow down (he has a naturally quick paced walk!) and catch my breath - to carrying his heavy rugs, to just being able to have the energy to ride! It's all so magical. 

And it's like that with everything. To jumping out of bed in the morning, feeling energetic and no mucus to cough up.  To go for long hour walks exploring my suburb (which I was never able to do since I moved here!), and to laugh, without becoming exhausted from a coughing fit!

This is a video of Andy and I on our fourth ride. It's taken at my agistment property, near the lovely Dandenongs.



Mum

Darling mum has been living with me ever since my operation - and quite a bit before that too while I was in hospital having my IV's antis and then doing home IV's.

Next week she will be able to go home, and get back to her normal life with her husband!  It's been a long and sometimes lonely time for Dad - I am so very lucky to have such wonderful parents. 

I can never thank them enough for what they've had to give up these last four months or so - but hopefully seeing me the way I am now, it was well worth some of the sacrifices they had to make!

I'll miss mum enormously (especially our ritual of watching Lost - we made it through all seasons 1 to 6!!!) but I am so glad she can go home and be with Dad, and they can go on holidays again! :)

Other bits and bobs

I'm still juggling doses of insulin and will be seeing the diabetes doctors to discuss trying a different insulin (I'm currently on one that is short and long acting) as I keep having hypos in the night. My body simply wakes itself up and I need to eat to get my BSL's up again.   I keep two pieces of rye bread by my bed and nom nom nom!! Not good for watching the weight, but I haven't got any other choice at this stage!!  So I hope that appointment comes up soon! Otherwise I will get very fat, lol!!

I'm also still juggling anti-rejection medications in regards to my kidney function, so still having regular blood tests and changing doses accordingly. But the doctor appointments are getting longer inbetween, and I no longer feel like I am living at the hospital!

I think that is all the news. I still pinch myself every day at what I am able to do now. It really is a miracle.

Bye for now
Love Genevieve

Friday 10th September - Week 11 Post LT

Lung Function

Good news is my lung function has come up again  to 70% Fev1 so that was very exciting!! I am really feeling the difference in my breathing now...it's so slow and steady now, just lovely...:)

Overall

With my tacro FINALLY finding some stability, I was allowed to bring back down my dose of prednisolone (to 15mgs daily). This has had a big affect on my reflux and getting my insulin doses right for what I eat. Overall I have felt more energetic and less tired and more of feeling "normal".

My splints near my knees have nearly healed and I will hopefully attempt to start jogging again next week.

Just a short update for this week!

Until next time!!

Friday 3rd September - Week 10 Post LT

Someone put me down!!  Yep I went lame this week. Haha....

Exercise

Last weekend I started feeling sore on the inside of both knees.  On Monday it hurt to jog in that area, Tuesday I didn't jog but still did a long walk, and by Wednesday I told Lou our gym physio.  No jogging for at least 7 days - she treated me with ultrasound and I didn't do any tready work or stepping that day.  Ok to do a bit of a walk but nothing like my 50 minute walk/jogs that I was doing!  Today we repeated the ultrasound and again I didn't do any step or treadmill work.

Apparently at high doses of Prenisolone, the tendency to have these sort of things (muscle and joint injury) is more likely. Ahhh thanks Mr Pred!!  And thanks for my fat face too....:-(

Reflux

Because of previous liver and bowel issues, I see a gastroenterologist every 6 months.

Everything was good, but he suggested cutting down the dose of Nexium I was on - long term use can create problems.

So I did that, but unfortunately I became very sick over the weekend with pain and nausea from reflux - so I went back on them and it took a few days for the body to right itself.  Ever since I've had pain niggles but it's tolerable.

Checkup

Last Monday I had my checkup and he said it's fine to be on the dose of Nexium I am on at this stage of my recovery (phew).  Tacro is still up and down and my kidney (creatinine) levels are still too high.  So the dose of Tacro has been lowered yet again and we shall see what next Monday's blood test reveals!

Diabetes

Am still fiddling with my insulin doses but I have lowered the night time dose so I can avoid the night time hypos.  I make the lunch time insulin dose the largest because it seems to be the time when my levels really go up.

The levels also have been higher because of slowing down on my exercise.  Everything is so linked!!

Sleeping

Overall this has greatly improved.  I wake up about 2 times a night now and generally fall back to sleep quickly. I still wake up with night sweats, and sometimes reflux pain around 5am - 6am.  

Aside from Mondays where I get up about 6am to be at the hossy by 8.30am for a blood test and the other bits and bobs, I sleep in til near 8 as I always have my morning medications then. If I've had a bad night or still feel tired and it's a day off, I have my breaky and meds and go back to sleep for a while. If I feel ok I push on and might have an arvo kip.  Sometimes I don't need an arvo kip either but need to go to bed early. Overall, I still crave lots of sleep! lol

Riding

Counting down til the "moment"...!!!

Gym

Quite a few people have left now as they finish their programmes.  I find I am taking more and more time to finish as I keep getting things added in to do, and I am talking more...lol!!  I feel like I'm back at school and I'm getting distracted catching up with people!! It's been a wonderful group and you feel sad when people leave!!

Driving

Been doing a lot of driving this week and it's an absolute luxury to have this independance back!!

Think that's all for now

Til next time, thoiya later!!

:)

Pictures of Andy and I through the years

Andy

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!

1996

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 http://www.jwep.net/

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

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. 

Bronch

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.

Diabetes

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   http://www.naturallysweet.com.au/g/176/about-xylitol.html

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

http://www.transplantbuddies.org/

Until next time!! 

:)

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. 

Jogging

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.

Stomach

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 accounts...my 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 magnesium...so 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 benefit...you 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 kidneys....so the easiest thing to avoid that is to drink more!

Singing

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! :)

Diabetes

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
food.
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. 

Goals

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.

Muscles

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!!

Carer

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.

Tuesday 27th July

Well I woke up at 6.30am this morning and couldn't get back to sleep so I started thinking again about what I can sing at my mother's 70th that's coming up in a couple of weeks.  I was looking at karaoke songs yesterday and I think I have finally found the one....makes me cry so I reckon my family might need a few hankies ready.

SLEEPING

My sleeping continues to be a nuisance.  I'm now off all pain medication and I ache a lot in my sternum but I'd actually rather be aware of it, rather than do a movement and risk putting it out of alignment again!  Now that the pain medication is out of the picture, I'm now blaming my bad sleep on the anti-rejection medication called tacrolimus.  The other anti-rejection medication I have is in the morning so that's why I have been able to narrow it down. Plus I looked up the side affects and sure enough one is "trouble getting to sleep and staying asleep". I'm not too bad with going to sleep, but I'm waking up continuously. It varies a lot but last night for example I woke every hour around 6 times.  Plus I'm still waking up covered in sweat. I'm not having temperatures so my doctor said it's probably the body adjusting to everything. 

Hopefully this will settle down in the up and coming weeks! Days would be better!!

It's during these awake times my brain gets active and starts writing what it wants for the blog. I've always worked like this. Whenever I've had an article to write, I've let it write itself in my head, and then when I'm ready it just seems to flow across the pages very easily.  I had none of this when I was really sick, I had lost my mojo.

I've just paused for a second to listen and feel my beautiful lungs take slow and steady breaths.  They still continue to amaze me as does the whole journey - it's 5 weeks today since my operation.

But moving on....lol.  Well another problem I have with waking up in the middle of the night is feeling hungry when I do so!

FOOD GLORIOUS FOOD!!

The amount of food I have been eating has been absolutely ridiculous. I think mum is pulling her hair out trying to keep me content!! There are 3 things affecting this. Firstly is the prednisolone which is one of my anti-rejection medications but it's also a steroid...and they make you hungry!

Also because my blood sugar is still not yet sorted out, this can also cause you to lose weight, as your body cannot get the energy it needs.  And thirdly as I'm doing a lot more activity, I'm needing more energy.

When I got home I lost a few kilos pretty quickly and am still struggling to get that back on and my tummy just never seems to feel full!!  I ate so much yesterday and I think it's the first day by about 5pm I felt like I couldn't fit anything more in!! I ate 2 pieces of toast with cheese, porridge with banana, 2 vegetarian rice paper rolls, got home and had 2 potato cakes, 4 rices cakes with avocado, almonds and cashews, some chicken twisties - then my beautiful friend Kim brought around a doggy bag with yummy sausage rolls and savoury scones...so I scoffed a scone and THEN I had chicken and rice for dinner and more nuts!!

Hello does this seem a lot of food? LMAO!!! And I bet I'll have hardly put any weight on, it's hilarious!!!!

As a CFer, we are encouraged to have high fat diets.  Like in our lungs, we have mucus in the rest of our organs. That includes the liver and the pancreas.   This is the reason that we have to have digestive enzymes for our food, as the mucus blocks the digestive ducts, with the juices that help break down our food. Some CFers have no digestive enzymes - some do but they are blocked...so either way the digestive enzymes/medication we take is essential.  For this reason also we do not absorb fat as well as other people, even with the help of the enzymes, so we have to eat a lot, and high fat.  Once we start losing lung function, the need for high fat increases as we burn so much energy - the lungs are working harder, the body is working harder - from coughing, normal body functions (such as just breathing) and then of course energy expenditure from activity.

When I was in my 20s I was a lot heavier, and actually had to watch my weight like everyone else....my digestive system was excellent.  Because my lung function was so good, my body did not need energy to compensate.   I still had enzymes though and they worked very well.  For some CFers, enzymes are not enough, so they have to have intravenous food overnight as well as what they eat. They have a permanent little hole in their tummy called a PEG.  A PEG stands for Per cutaneous Endoscopic Gastrostomy, and it is a feeding tube that goes into the stomach directly through the abdominal wall.

I got very ill in 1999 and lost about 8 ks very quickly. That was when my CF became more obvious to people - before then it was just my continuous cough that gave me away.  I never gained all the weight back and from there on had to work hard at putting on weight. When I got pneumonia twice I again lost more weight.  It took me a long time to put weight back on. My goal from there (was 2004) was to try and get back to 60kgs but I have never achieved that!  I generally sat on 57kgs right up until my transplant.

When you getting toward end of stage CF or waiting for transplant, most CFers, well we look awful.  I've seen some girls at CF clinic who look like they are knocking on death's door - very similar to anorexics who are close to dying. Not all of us of course - including myself. Which made it very deceiving to people who didn't know me, as discounting the cough and the breathing (and perhaps the pale face!) it was hard to tell there was anything wrong. 

Anyway, with our high fat diets, we can eat what we like!!  And that includes all things naughty.  Because my weight was stable I didn't have to stuff myself, but the snacks that involved chocolate and other such yummies were so much fun because you didn't get fat from them!

So it's now killing me I can't eat these now!! I was lucky I generally had a very healthy diet so my main meals haven't changed but I'm craving chocolate covered things!!  And nope having a full tummy isn't making the cravings go away!!

MEDICATION

My rejection medication called tacro, has a therapeutic level which is different for every person. Even at weeks five my doctor is still trying to sort this out - it's been very tricky! Very similar to my naughty sugar levels!!

BRONCH RESULTS

I had my checkup yesterday and received the welcome news that on a scale of 0-4 of rejection I have a big fat zero.  As well as pseudomonas from my bronchial tube, I have also a fungus (no mushroom jokes please...haha!!) called aspergillus, so my doc has thrown in another medication to get rid of this.  Whilst my joins are healing well, the aspergillus could cause problems if not treated.

What they look at for signs of rejection, is cells clumping in a particular way, and they establish that from the tissue sample taken during the bronch.  So this way they can detect it, even before you start showing symptoms.


I also got to see my sternum X-ray....like my quiet clicking suggests (as opposed to the enormous clicking I was having on most movements), my sternum is a wee bit out of alignment, but it's OK, my doc says my body will fix that on it's own. The wiring has stayed in place and it is all looking good.

I was also told of the price of the kryptonite last week and it's astronomical!!  I was having my dressings changed and we were talking about the price of them which then led on to the kryptonite...I am very lucky!!!!  I had better not write it here!!

BIRTHDAY

Friday night I had a lovely tea at my sister's.....what a change having a birthday that I felt well at.

I also had a lovely weekend catching up with friends. Ever since I was 14 I've had my high school friends over for a catch up and years later we are still doing it. Unfortunately quite a few couldn't make it due to lurgies! But I'm very grateful they have become astute at knowing when  to stay away!  I giggled at one of my presents being home cooked lasagna....not only did it taste wonderful but it's just such an appropriate thing I need at the moment!! lol

That is all the news for now. Love Genevieve

Birthday gal! (One on the cake for one month old lungs!)...otherwise I turned 35. :)

I ignored the no sugar rule that night! The pav

was soooooo yummy!! Om nom nom nom!!

My gang - James, Mel, Me, Mic, Ivo, Grace and Matty.

Thursday 22nd of July, 2010

Goodness me, an exciting day!!

When I was out of the loop, one of my dear friends started a facebook group called "Team Genevieve" to keep people updated of my progress whilst in hospital.  And then one very generous man Simon came up with an idea. Kim one of the organisers has now shared me with me some of the scheming email which I'll share here.

"As Gen prepares to leave Hotel de Alfred, we thought we would share a great idea that our mate Simon had. Traditionally when people are sick and unwell, we send flowers or chocolates to brighten their day and speed their recovery. We thought that, rather than adding to Gen’s compost bin that we would try for something that might help a little more.

Thus, it is with great pleasure that we announce the creation of the “Gen Broom Flowers and Chocolates Fund”! Instead of sending her a lovely bunch o’ posies, the idea is to put the money you would have spent into a “pot” (read: specially opened account). Our theory is that if a few of us do this then we might have a nice amount for Gen to then put towards whatever she deems will help her recovery; be it petrol to get in and out of the Alfred, some new running shoes or competition gear for Andy or a big party to say thanks to all of us – whatever her heart desires!

We thought we would give everyone a few weeks to get organized and so have set her birthday (July 23) as a ‘deadline’ of sorts when we can hopefully do a bit of a presentation to the lady."

So it was with shock and a few tears that I was presented with my gift today and have been completely overwhelmed with it. Thankyou to each and every one of you. I am hoping to buy a new jumping saddle (haha!) for Andy, as his old jumping saddle no longer fits and it's time to be updated! So when I start jumping again (!!!) I will be able to think of you all.

I emailed all the people who contributed today, but my apologies if I have missed anyone. Thank you so much again.

It's my birthday tomorrow! Yippee!! My first birthday with my new lungs. I've always looked forward to birthdays - especially considering that each year is a blessing in terms of still BEING HERE, but this birthday will be extra extra special with everything that has happened....what a birthday gift my beautiful donor has given me.  I am wondering how her family is going.  I think of them a lot too. :(

I was also rather overwhelmed (yes again!) when a friend of mine who is riding Andy for me while I'm out of action, told me this.

"By the way, I am organising a Cystic Fibrosis Victoria fund raising day on the 5th of August at my school (Moama Anglican Grammar) – we are having a crazy hair day AND I hope you don’t mind that I got one of the student leaders to read out what you had written on day one of your blog, at assembly. It was great actually because it was the only announcement during assembly that EVERY student listened to – you could have heard a pin drop! Although they did all have a little giggle at the bit where your Mum says “stuff the cow!” I will keep you posted about how it goes and send you some crazy hair pics."

I am absolutely touched by Kate's organising of this, and love that all these kids got to hear my story. Hopefully this might inspire them to become organ donors, or perhaps learn more about CF.

Things have been going fine here. I had my 2nd bronchosopy yesterday and it went smoothly. They found gunk that would be expected at my stage - and I was finally able to stop IV antibiotics after being on them 2 months, and get my PICC pulled out! Yay!!

I am now on inhaled tobramycin (which I couldn't handle with my old lungs, but can with these shiny babies!) and an oral antibiotic.

We are still playing around with my insulin as my sugars are still being a bit naughty. I am eating so healthily too!  I usually did before the LT (you should hear of some of the CF diets - they are SHOCKING!) but I have cut down a lot on my sugars - I don't even have any sugar in my tea anymore!

My exercise tolerance keeps going higher and higher and I'm still loving every minute of it!

I checked with the OT about when I can start driving (at the earliest) and it's about 6 weeks from your operation. I'm already at 4 weeks so only 2 weeks to go! Once I'm driving again, I can then get Andy to come back to his agistment in Melbourne! Yay!  I won't be able to ride him til about the 2 month mark, but I will be able to lunge!!  Might have to get friends to do the poo though, cause of my sternum! Haha, what a pity!!

Visit from Kim J today and the delivery of the best present

since my 30th..hehehe :)

More friends visiting - Jo, Lani, Al and Gen

When I got my PICC out yesterday, I filmed it! I know, eww! But for anyone who has an interest in anything medical, I have uploaded it for you. There is no blood, but all the same, don't watch it if you know you are squeamish. If you don't like medical shows, then you'll know not to watch this!!

My brother Mike and I

I was hardly able to talk at all to Mike when he visited me in ICU, so it was great to see him again and have a proper catchup!! 

Mike is a very cheeky fellow. Every time he visits, he turns all the pictures of my sisters around to the back, and just leaves the pics of us to the front. He waits for me to discover it after he has left. I am onto him now though and usually am able to tell him off before he leaves. You can probably see in the background some of his handy work of frames facing the wrong way!!

He also hopes that my television is dusty so he can draw a face on it. But mum has been doing all the house work so there is no chance of a dusty television!! He is a very naughty boy...lol!!

Thursday 15th of July - What's been happening since I got home

The days fly by so quickly and I'm enjoying it all now and have been too busy to update!!

It has been wonderful to be home but it also has been very busy.

It's only been since last night that I have finally had an improvement in my sleep. So far I had been waking up every 2 hours because of either/and/or drugs waking me, or from having a night sweat, coughing or pain, and finding it difficult to get back to sleep. Last night I slept til 5am, fell back asleep quickly until my mum woke me up for my IV drugs. Ooooh I could have kept on sleeping!!

It's tricky but I think I have some sort of routine down pat when I am home (which is Tuesday, Thursday and the weekends).  I have IV antibiotic drugs which are 8am, 2pm and 8pm for one and every 36 hours for the other.  The IVs take about 50 minutes to go through, by a special pump that attaches to my PICC line.

I have to check my insulin before and after breakfast, before and after lunch and after tea. I set my mobile alarm to remember to check my insulin two hours after I have eaten breakfast and lunch.  At the moment I do not need insulin at night.  In the morning and at lunch, I give myself an injection with an insulin pen just before I eat.  My blood sugars are slowly starting to stabilise.

After I have done my morning IVs and had a shower, I then do my exercise. I have my own treadmill, fit ball and weights. I can't do weights yet because of my PICC and my healing sternum, but as soon as that is out and the sternum is stronger I will look forward to giving my arms a good workout!!

I do quite a lot of stepping exercises on a step at the gym - I decided I wanted one at home too, so I ordered that yesterday! Loving the retail therapy! 

Lunch quickly rolls around so mum and I have a break. Then it's back onto more IVs. My physio sessions are getting less throughout the day, and the need to cough.  In fact I'm hardly coughing at all now and not much flem..yay! :)

Monday, Wednesdays and Fridays are gym days.  There are pre and post transplant people there, with new hearts and new lungs. There are about 7 or 8 CFers with new lungs.

I feel really sorry for the pre-transplant people. There is a sadness or desperation in their eyes, as they  see us working out. I hope that they are able to transform their feeling into one of hope, thinking that they will hopefully be in the same position down the track. One of the things that turned me off doing pre-transplant gym, was  that very reason. I didn't want to see people working out and looking fit! That was one thing I couldn't turn around to be a hopeful thing for me. Besides I was doing enough exercise at home anyway, and am lucky I have all the equipment I need.  And I was motivated! No matter what!!

Aside from gym, I also have blood tests to monitor one of my anti-rejection meds and my kidney function. While I'm on tobramycin (one of my antibiotics), I have to do a small blood test for that too, which I do myself. I either get the courier to pick it up, or take into the Alfred the next day.

At the moment I also have a LT checkup once a week.  They are happy so far with my progress.

On Wednesdays before gym, I have education talks. Our carers also have compulsory talks to go to, as well as sitting in on ours. Topics covered include nutrition, occupational therapy, medication, rejection and infection, physiotherapy etc.

This week was a patient only session with our LT counsellor, just to have a general chat about anything really!  It's interesting hearing how people are going, how long they were waiting and how they have been affected by it all.

One CF girl was on the dreaded Bi-pap machine 24 hours a day for 6 weeks before her lung transplant. And I was having a whinge after about 4 hours of it!!

Each day I have a district nurse from the Alfred visit to take my obs, check my wound sites and PICC dressing and share any concerns. 

I keep having moments of "wow". From not having to cough half a cup of flem each morning - to being able to get up out of bed straight away.  To feeling tired from lack of sleep, debted sleep and early mornings and healing, and still coping and having energy and remaining upbeat and happy..and very excited! Some nights it's hard to go to sleep, just because I am excited about everything!! Even something like keeping up with mum walking is a great thrill.  She always had to let me walk in front of her, so I could set the pace - a very slow one!! And when I go to hug her, she cannot hear my crackling old lungs and rapid breathing. No noise and nice slow deep breaths to match hers.

I think of my donor daily - and I have started lighting a candle in her honour each morning, in my cute himalayan salt lamp.

I have been using meditation and music to help keep me calm - was especially useful last weekend when I was feeling anxious about having an infection and about my sternum repopping!

On Monday at my checkup when I was waiting, my surgeon who was there for both my LT and my sternum operations, bounced in and asked how my sternum was going. Then he said  - "I had people all over Australia ringing me to ask how you went....you were my guinea pig." 

I'm rather perplexed as I'm about to ask what he means, when my doctor comes and explains that they used this glue call "Kryptonite" as well as wire to redo my sternum...so now I'm being called Supergirl by my friends on facebook when I reported that...even though the Krypto was not so good for Superman!! I think it's hilarious!!!

I had another sing today to see where my voice is sitting. I am a bit wobbly as the voice has more air to play with and my support system (muscles to support the air when you sing, in the abdo area) are quite weak - my breath is the least of my problems now!! It's a wonderful feeling!!  So I've started doing scales to build all this up again!

I have been spending a lot of money getting new gym clothes! I get very hot when I work out so I'm having to buy proper gear to keep me cool. I don't have time to go shopping, so I'm just buying it online - saves energy and also cuts down on the possible germ factor.

On Tuesday 2 separate couriers arrived at the same time....I was laughing my head off as mum had gone off to collect the first one, when the second one arrived!!  I've ordered so many parcels recently, horse and for me, that the couriers would all know me well by now!!

The hospital is always very hot, and I don't imagine they will allow us to use fans to keep cool, because of the germ factor.  Mum thinks it's wonderful that I am spending money on clothes instead of on my horse! Hahaha!!

The gym is very hygienic. Every time we use any of the equipment we have to use an alcohol wipe to debug it.

I'm really loving all the exercise...it's just a brilliant feeling to be doing cardiovascular exercise again and not feel breathless. Just breathless in the right way, the good way. The bad way is working and feeling like you are underwater. It's a really horrible sensation.  I'm lucky that I have always loved exercise and so it is never a chore for me, most especially now!!

My mum as I knew she would be - has been absolutely sensational.  She is a heaven sent angel.

I think that is all the news for now. 

Love me!

I have all the equipment I need set up in my room. I usually work on

the computer when I'm doing IV antis. Gives me the opportunity

to catch up on horse forums, emails and facebook! Plus look at more

things to buy online! hahaha!!

My donor's candle :)

Day Eighteen - Friday

If pain was under control, LT gang said I might be able to go home still by the end of the week. I put that out of my mind, as I know how quickly things can change!

I woke (well I wasn't really ever asleep!) feeling more like I did before the operation pain wise. I had a bit of coughing during the night and coped with that ok.

LT gang swing by and they are happy for me to go home since my pain is under better control now.  I'm still not counting any chickens......

Pharmacy not long after come by with all my medications for going home.

HITH (hospital in the home) come by so that's when I knew I was on the home stretch!

Got that all sorted (they will visit every day that I'm not coming into the hospital - on the days that I do, swing by their office to check in , and get any more supplies if I need any) and I'm just starting to do a bit of packing and then the surgeons came back.

They redo dressing (ouch!) and I wasn't really happy baring my boobs while two students made ouch noises as well as the tape was ripped off them.

In this time, an IV is going through and the machine keeps beeping at me saying it is occluded. While the surgeon is still doing his thing, I just put the machine on silent. Occlusions (blockages) are usually easily fixed but once the surgeon has left, and I call the nurse to flush it, it will not budge. Another  nurse tries and can't budge it either (usually a little clot of blood)....thankfully one of the CF coordinators happens to be walking by and comes in to say hi and sees I'm having trouble.

In the meantime one of the LT docs comes back and has a sad look and says you won't be going anywhere if that has packed it in. I just nod thinking yep I know! They have to book PICCS in advance so the likelihood of putting another one in the same day is about NIL.

But, after about 10 minutes of fiddling, breakthrough and the PICC is saved...hooray!

It's off to gym and I am not doing the normal workout but doing a study thing for the head physio so that doesn't take long and it doesn't take anything out of me.

Head back and mum is suprised that I have been given my ticket of leave out of the jail! Just have to get my PICC dressing changed and we can go.

Nurse forgets so finally at 3.30 I find her (she said she'd be back at 2 to do it) and 5 minutes later we escape.

Can you understand why hospitals for a patient can get very wearying in every layer of your being??!!

I slept more than I have since the LT surgery last night, but it's still interrupted with coughing and waking up - probably from the medication.

I've juggled the IVs, CF meds, LT meds, oral pain meds, measurement of glucose levels and insulin injections all ok today.  Where do you get a life around all this I wonder!!?  I had a nice workout on the treadmill too and a lovely visit from my sister, niece and my favourite little man aside from Andy....wittle Oscar!!

On Monday will have blood tests, gym, LT follow up appt, and diabetes follow up appt.

Well that is it for now

xo