Thursday, July 15, 2010

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 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 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'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 :)


  1. Ooooooh and a special horsey quilt on your bed too - that means I am always with you.. NOICE, as she wipes away a tear!!! xoxoxo

  2. Oh sweetie! Mum gave it another scrub the other day to try and get the stain out...neaaarly there! :)

  3. Dianne & RickJuly 16, 2010 at 12:58 AM

    Yay Gen, you are indeed a Supergirl! Loved reading this blog report. Great you are finally getting some sleep and routine and exercise - yay! In Calgary now, heading to San Fransisco today to get flight back to KL via HK. Will be back in KL on Saturday. Lots of love and kisses, Di & Rick

  4. Gen,
    I am so greatful you are doing well. I was reading about how you felt before and after LTP and know I will probably be too old by the time I need one. But am thrilled God listened and answered prayer for your new lungs and life.
    Keep up the good work Super Girl....LOL...Now, are you needing a quilt with an S on it???

  5. Your donor's candle brought tears to my eyes. Bless you Gen and bless your donor.