My anniversary has been and gone - had a fairly quiet day on the actual day, then the w'd just gone I had a special dinner with some of my family. It was also my brother in law's birthday.
I had been quite emotional leading up the day, but on the actual day I was fine. :)
My sister and her daughter made me a wonderful Lung Cake!! It looked and tasted wonderful!!
Monday, June 13, 2011
Andy and Gen, Bealiba HRCAV Show. Feb 2011
Ooopsy! I had meant to be a bit more regular with my writing, but time does fly when you're having fun!
I finally wrote to my donor a few weeks ago. Until then it hadn't felt right to do so. Every time I thought to do it, something stopped me. I think it may have been some intuition, telling me it wasn't the right time for my donor family to receive it. As my anniversary approaches, I hope my letter can give my donor family some comfort. My anniversary is the 22nd of June. :)
It's hard to believe that it's nearly a year since my transplant. The phone call and all that ensued are still quite vivid in my head - I can even remember my thoughts at certain times. But it also seems so long ago, when I think now of the fragile woman just fighting each day to survive.
I just took a few slow deep breaths then. Old Gen would have taken about 8 breaths to new Gen's one breath. Even now I still have moments of "wow" and gratitude quickly following....I am still discovering things that I couldn't do or wouldn't have coped with well.
In Australia we are now in the full swing of Winter - the days are often cold.
I remember horse events (early in the morning) and times out at night where I would have the worst coughing fits because of the cold air. When I rode Andy, I used to wear a scarf over my mouth to try and keep the air warm, and would also do the same after coming out of a warm venue to go home. Coughing and breathing at the same time can be a bit tricky...lol!! Those coughing fits were bloody awful. Just such a beautiful thing to be able to cope with the cold air now.
Checkups and Bronchs.
Hopefully I've had the last bronch I'll have to have in a long time!! It came back all clear, as has every one this year. :)
I have finally been able to drop one of my medications which was causing renal disfunction, so I'm sure that my kidneys will be very happy to not have to cope with that anymore! I'm not sure how much water I could have drank to keep them happy! I had only just started a blood pressure medication too, because of this drug (which causes high blood pressure), so thankfully can drop that again too!
Every now and again I get a bit of tummy pain, and my iron is also low, so I'm going to have a gastrocopy to check I haven't got an ulcer. Following that I will probably have to have a Ph monitor to check if I do have reflux....a Ph monitor is a tube that is put through your nose and sits in your tummy, and is attached to a little machine you wear. You have to wear it for 24 hours and it will measure your acid actitivity. I have had it done before and it is very unpleasant! I was hoping that I might get out of it, but I guess it's better to check! The problem is that if you have acid reflux, the acid can spill into your lungs and create lung damage. Reflux is very common in CF - I didn't have it before but since the transplant and medications I suspect I have, and again is very common.
This is from when I had one back in 2004.
My prednisolone has finally dropped to 7 and a half and my face is nearly back to normal. Perhaps it's a bit chubbier looking now because my face has just naturally filled out to what it's supposed to look like - not gaunt anymore! Since my dose has dropped my "splints" near my knees have also stopped being sore..bonus!
I still have diabetes and am taking a fair bit of insulin but I have pretty good control of it all now.
Well haven't Andy and I been having fun!
In HRCAV they have an award that when you reach 100 points in any discipline of Showjumping, Eventing, Dressage or Combined Training you get recognition and get a trophy of some sorts! In Showing it is 300 points, and that is an award Andy and I have already obtained. In each competition you do, if you are placed 1st - 4th, you get points, and these are written on a card and also the HRCAV office has a copy. So the idea is that eventually you'll gain 100 and it is a very clever thing to do...lol!!
So Andy and I finally cracked our 100 points - you get to write an article for the HRCAV monthly magazine with a mugshot, and then later in the year HRCAV hold a dinner with presentations, so we can collect our award then. Good fun!
With much joy, I did my first jumping event since 2004 with Andy in May. Unfortunately mum and dad were away, so they weren't able to witness it or video, but I did manage to get one photo, which is also unfortunately a bit out of focus but you get the picture..(literally)!!
We had a fabulous day winning our dressage phase and going clear in both the show jumping and cross country phase. Andy as usual went fairly fast on the cross country, perhaps forgetting that he is the grand age of 24 and to perhaps take it easy, but no way he says, as he pulled up over the finish line!! He seemed to know when the last jump was, and slowed down to a nice trot. He knows the course better than I do I think!
I'd had to wait a long time to jump to allow my sternum cope with the impact of landing over jumps - it was no problem and my sternum is still well intact! Haha!!
|Photo by Sam Feldtmann - Website - www.swfphotography.com|
Kyabram P.C Horse Trials, May 2011
I had to re read my 6 month blog to remember what I had written. Apparently I was going to get fat from the ginger bread at Christmas time! Thankfully this has not been the case!!
From the age of 15 I was an aerobics freak - I would tape "Oz Aerobics" and then do aerobics before I went to school. Sometimes I would do aerobics after school at the gym with a friend. Combined with horse riding, I was always fit. Later on in my twenties I started running as well. My logic was that this was a way to control my health and help out my lungs.
I never had a problem with putting on weight, (unlike most CFers!) so as well as keeping my lungs healthy I had the extra motivation of controlling my weight with exercise!! At one point my physio Brenda said I was doing too much exercise, when I said to her I'd been a bit tired. Turns out running and horse riding in the same day might have been a bit much! Derr!!
Well give Gen new lungs and I've basically took off where I left off - zumba, weights, running and walking (plus the horse riding)...I am loving to be able to use my body as it was meant to, and becoming fit again is just awesome! And guess what I sometimes get too tired and think hmm maybe I'm doing a bit too much (again!!). I have unfortunately not been able to get rid of my new "belly" acquired from the prednisolone, so I maybe stuck with my spare tyre. I do hope it might miraculously melt away, we shall have to see...haha!!
Well there really isn't much more news - I'm just living my life and enjoying myself. I catch up with friends, do all my house work, shop, look after Andy, ride, compete on weekends, exercise, fit in many hospital appts (diabetes, lungs, liver, eyes, blood tests etc!), and I rest and sleep still a lot too!
I've had a few quiet weeks with feeling unwell from my flu shot but so far I haven't caught anything too nasty.
It is with much gratitude that I have my lovely strong body with it's beautiful lungs as I approach my 1st year anniversary.
I hope this finds you all well. Love Genevieve
|Gen and Andy @ the TTT Showing Championships. January 2011|
|Andy's first ever beach outing. Feb 2011|
|Gen with her sister's Jo and Sue, celebrating Jo's birthday. June 2011|