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.
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 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!
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. :)