Wednesday, December 22, 2010

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!!

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


  1. I am smiling from ear to ear with your update. I will remember the donar and her family. What a self less thing to do.
    You are my inspiration and I think of your lovely smile when I think of you...
    You are a very blessed lady, and your family are blessed as well.
    Keep up the good work and keep on riding !!!!!!

  2. Hi Gen,
    I finally had time to sit & read your blog. Isn't it great to be 6 months down the track. I am also sitting here thinking of our precious gifts our donor has given & also think of her & her family every day. You have taken on life & love your beautiful Andy. I feel the same. My rollercoaster ride continues with a bout of pneumonia that came on suddenly last week. So at hotel de Alfred once again! spent 3 nights in ICU now in ward pushing to get home for Christmas. Will email when I get home just wanted to acknowledge our 6 month anniversary & especially thanks & gratitude for our gifts of life. You articulate so well the journey with all the highs & lows. Take care, hope to bump into you sometime soon, so enjoy Christmas & we can look forward to a fantastic 2011. Cheers Maarit
    PS glad they came & got my defibrillator!

  3. Hi Gen, I've read your blog and come back every so often for an update to see how you are going.
    I can remember you posting a link to the transplant site so off I went to investigate further.

    I must say I was amazed at the things you guys have to cope with after the transplant!!!

    I always thought it was keep an eye on rejection and that's it. The site really opened my eyes and I for one am impressed with the strength you all have to go through with it.

    I know that probably sounds odd, people are supposed to want to live. But I couldn't go through it personally, I am weird though. lol

    I can imagine how frightening the last few months were for you all. Huuuuugs

    Bugger about missing the presentation. Yucko to the heat.
    Awesome photo of you and your beloved Andy. :)

    My family and myself are all organ donors, always have been. I can't imagine people not wanting to donate.

    I wish you the very best 2011 Gen, you are an inspiration. :)

  4. Hey Gem
    Great blog on your journey. I'm a Melbourne health researcher wanting to conduct an online survey with Australians 18+ with CF as part of a global study. Do you know how I'd find 40 of them across Australia to invite to do the 10 min survey? I thought somebody might have an email list or something. Appreciate your advice.
    Sam Everingham

  5. GENEVIEVE!!! I feel a kindred spirit to you: I too have CF and had a double lung transplant and have returned to riding my Welsh Cob here in Canada. I hope you continue to have wonderful successes both in the pulmonary function lab and in the saddle! The Docs make me wear a ridiculous mask in the stable so I don't get sick from the hay mould and poo spores, but I talked them into letting me ride without it ; ) I mean, what was the point of transplant if I wasn't aloud to ride?