Friday, December 30, 2016

2016 - not a year I ever want to repeat

This was my 2016 "resolutions" post... The year WAS different... little did I know that 20 days later would be my last day at work, and 23 days later I would be in ICU with 2 collapsed lungs. Not working has been good for my health in terms of staying stable. Started using O2 at home when I was discharged, and can't cope without it anymore unless I'm sitting absolutely still (and even then heart rate is too high to feel comfortable). Lung function dropped with roughly 8-10% during the year, but it would have been much worse had I not been looking after myself as a full-time job. In many ways I am having deja vu to this time in 2007, but it's also very very different. My ONLY resolution for 2017 is to survive it. Back then I had this quote up on my bedroom wall, and it's ringing true just as much now.


2016 Had some very good and very bad times. Highlights were Ditha's wedding in May, holiday with family over Easter and Anna and Casey's visit. Unfortunately I also lost a few friends (see recent blog posts) and the year was just emotionally rough in general.

Christmas was very nice. Family time is always good. Really really missing beach-summers... where you swim in the sea and tan on the beach (not that I'm allowed to "tan" anymore), Would give anything for a good swim in the sea right now (not with current lungs obviously, would drown!). Had some weird dreams last night where I was on a kayak in the ocean, and running/hiking etc... Only to wake up and realise that none of those things will be happening anytime soon and neither are they physically possible. I know things could be worse (they can ALWAYS be worse) and I've been lucky that my rejection has been as slow as it has, but I'm really tired of dealing with it and the consequences for the last almost 4 years now. But back to Christmas... below are some pics...




I've also been working on some crochet stuff for the new addition to the family that's due at the beginning of April... something different! We're all so excited to meet the little one in 2017, and he/she is already so spoiled.



Looking forward to Jan, lots of stuff happening and keen to get the year started. Have a great end to 2016 xxx

Friday, December 23, 2016

2 Sleeps til Christmas

It's almost Christmas! This year has been quite different... it's this first time that I'm not working at this time. Last year we took a few days off a bit earlier in Dec, in 2008 and 2009 I took off a few days between xmas and the new year, but I've always spend most of the "holiday season" working. Joburg is nice and quiet, plus if you don't have kids you're not bound by school holidays for taking vacations. So we've always ended up working. I feel a bit more of the "Christmas-spirit" this time. Very excited to be having Christmas Eve supper at our house tomorrow evening, and on Sunday we will be going to church with my parents, followed by tea and lunch at their house.




Drove to Linden this morning to buy wool, and a lot of the trees were wrapped in red material, so pretty! It's also my 9th Christmas with the "new" lungs. (they're not that new anymore!) Grateful for each and every one of those. This year is also special with my sister being 25 weeks pregnant on the 25th... So much to look forward to in the new year.


I've had some good times with friends in the wind down to xmas in the last 2 weeks. Antoinette was here for work, so we got to see her for a few hours on Sunday, which was very special. On Sat Brendan had a pool party at his house which was fabulous. I love my friends!




Yesterday was the 22nd again, marking another month with the lungs! Just one more month before another big celebration! Thinking of my donor's family at this time of year, as I know it will always be hard for them :-( Even though my body is rejecting the poor lungs, they are still allowing me to make memories and spend great times with friends and family. They've given me almost a decade, and there is literally no way to thank a family out there for that. I hope they will always know how much it has meant to me and my family.

I hope everyone has a fantastic Christmas, or long-weekend if you don't celebrate Christmas. May it be filled with joy, family, and good food.


Wednesday, December 14, 2016

Year almost over and blog's birthday

My blog turned 9 on Monday. Happy birthday blog! It's been a great tool for documenting my post transplant journey and hopefully it will continue for many years to come still.


Had a lung check-up on Monday, which was all good. Lung function stable, weight perfect, bloods fine. No more Drs appointments for the rest of the year.

I finished a blanket I've been working on for MONTHS, very happy with the end result. Started a new one now, a Corner to Corner, with amazing wool that I got for my birthday. After that I will have to start doing some baby stuff for the niece.nephew that will be arriving next year :-)


Love Joburg weather this time of year, it's so lush and green and love the dramatic thunderstorms. Always reminds me of the time in hospital after my transplant as well... the humidity followed by the massive storms.... kept me entertained once I was out of ICU and had massive windows.



Not much else to report on, everything seems to be wrapping up for the year. Having my last bio session tomorrow. Friday is a public holiday, will be spending it with friends, yay!!! Can't wait for Christmas and then this year should feel free to end.


Monday, December 5, 2016

Very exciting stuff and some more sadness

So much has been happening that I can't even keep up with all of it on the blog! Firstly, my sister is 22 weeks pregnant and I'm going to be an aunt! Soooooooo very excited for 2017. Also, our lounge has finally been redone by my talented friend Andrew!!! Check out the amazing transformation on his blog! Purposefully not posting any pics here so you have to go and look on his blog if you want to see :-)


Had a great weekend... on Sat I had lunch with one of my best friends of all time, and in the evening we had supper at Andrew's house. I haven't had such a good time in a while, very nice to just relax with friends, great food, drinks and laughter. Can't remember when last I got to to bed after midnight! On Sunday we had my parents and sis and Pierre over for a braai to unveil the new lounge, so that was great too.



In general I've just been more tired after the last hospital admission I had in October and a bit more short of breath which is frustrating. I need to limit what I do in a day or schedule a rest day after a "busy" day. Friday was one of those days where I just had to do nothing because I was EXHAUSTED after the week. The day of chilling at home just watching TV and not much else helped a lot, as Sat I was ready for activity again. It's a balancing act, because I need to stay as active as possible and do normal things, but my lungs get tired so easily that I need to cater for them too. So selfish :-p


The sad news is that Kirstie Tancock passed away on the first of December... I blogged about her just the other day... less than a month ago in fact :-( She was such a hero in the transplant and CF communities for surviving two double lung transplants and her physical strength that she exhibited through her pole dancing. She was made "famous" by a documentary on her called "Love on the transplant list" and I've blogged about her a few times before. Here are a few links to articles published following her death.

http://www.itv.com/news/westcountry/update/2016-12-01/kirstie-tancock-an-extraordinary-life-remembered/

http://www.bbc.com/news/uk-england-devon-38168972

http://www.dailymail.co.uk/news/article-3989472/Pole-dancing-teacher-cystic-fibrosis-endured-two-double-lung-transplants-dies-27-just-days-writing-heartbreaking-bucket-list-never-fulfil.html

http://www.mirror.co.uk/news/uk-news/double-lung-transplant-survivor-kirstie-9370804?ICID=FB_mirror_main

RIP Kirstie


Sunday, December 4, 2016

RIP Odi

On Friday afternoon another transplant friend ended a long battle. I only got to know Odette this year when I was in hosp, as she was from the Western Cape. She had been admitted since mid Feb (I just missed her then, as I was discharged early Feb). I met her in person in May when I was admitted again.

She was the friendliest and warmest woman ever, and I ended up having a few long visits in her room, one which was with Loraine (who passed away on the 18th of Nov). It was a special evening as the three of us really bonded, not knowing what was still to come this year. We had such a good time, realising how much we had in common and so much to talk about while waiting for our Dr to do his ward rounds. Unfortunately after that I wasn't allowed to visit Odette (or anyone else) again due to the bug I had cultured/ am colonized with so we could only chat via phone.


I was in the room next to her again with my admission last month. We could only text each other but it was still nice knowing you had a friend next door. I did get to see her once when they wheeled her past my room and my door was open so we got a secret wave in.

The one thing that I will always remember about Odi is how she never complained, even after more than 9 months in hosp. She was still cheerful and positive when I would have lost it long before that. I am not always the best in-hospital patient but I will never forget how well she handled her situation and it will forever be a reminder to me that friendliness costs nothing and her legacy makes me want to be a better person.

My thoughts are with her husband and family, I can't imagine their heartache. RIP Odi