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

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.

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.

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

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

Exciting News and longish post

Something quite exciting has been brewing for the last few weeks, and things are falling into place now. One of my friends from London, Brian, (who is American) will be coming to Joburg in Jan to interview me about CF. He explains it a bit better below!

Health-wise I've regained my strength that was lost in hospital, so body is up to regular standard again, yay. Sleeping has also been better, prednisone (steroids) back to normal dose of 7.5 mg a day, thank goodness. I have good days and bad days. Some days I can do quite a lot, and other days I feel way more short of breath and everything is hard. My resting sleeping heart rate (on just just more than 3 litres of O2) has gone from 73 when I was discharged from hospital to 89, which technically shows that breathing is worse and heart working harder but the increased energy has made me FEEL better so there are just so many factors that play a part in whether I have a good or a bad day! Very different to the old CF lungs, that's for sure. Much more unpredictable.

This past week included a lungaversary, errands in preparation for the new lounge, groceries, Love Life; Gift Life Skype meeting, bio, fibre installation in our complex for faster Internet, had car serviced, it's just been rather crazy. Had some awesome rain too. Above pic was taken from Linden in the rainy weather yesterday.

On Monday I popped into work quickly to say hi. Felt like entering a parallel universe (same as previous times I've visited since being on disability). Things have changed a lot, everything moves so fast. So many new people. And I'm not used to so much movement and activity and various things happening at the same time around me anymore. It's like my brain can only focus on one thing at a time now. It's become slow and I'm not used to having so many people around me at the same time either. It's rather overwhelming. But it was nice seeing some old colleagues again (didn't get to see everyone I wanted to but don't think that's possible in one visit!)

The last 2 kitty pics are just because I love them so much, they have SUCH different personalities but they seem to like it when I'm home, even if it's just so that they can stare at me from 13:00 hinting that it's almost time for supper. Oh and garden has also been looking really nice from all the rain and extra sun after we had tree trimmed! Especially my blue-ish hydrangeas... Hope everyone has a good weekend and Happy Thanksgiving to my American people!

RIP Lori

My friend who was in the room next to when I was in hosp last week passed away this morning :-( I'm devastated. I've known Lolli for a few years, I met her when she was having her work-up for transplant. She was such a fun-loving girl and an awesome mother... only 26 years old. We shared a love for tattoos and I am going to miss her a lot. My heart is so sore. On Tuesday night when I couldn't sleep I had quite a long conversation with her that I will treasure forever, and I am glad for that night of insomnia.

My thoughts are with her family and daughter :-(

Almost recovered from hospital, Leonard Cohen, Christmas in the air

Feeling a lot better than last week when I updated on health, which basically means the steroid side effects are wearing off. Less woozy and like the world is spinning away from me. Muscles have also gotten over the "weak" feeling and less bloated. So yay for those. I had a random fever on Thursday but luckily it went away after some Panado.

I don't think lung function has improved after hospitalisation, which is probably to be expected seeing as nothing was cultured to start off with. It is what it is. I just try to do as much as possible with what I have. 

Struggling a lot to sleep these last few nights, even with my sleeping pill :-( I'm hoping it's just that I have a lot on my mind and the fact that I'm still on more prednisone than my normal dose. Last night I even tried to listen to classical music like my grandad used to do. Which of course made me miss him to bits, and took me back to those 2 and a half months in 2008 when I worked for his company 3 days a week, during which time I stayed with him in Pretoria, and we used to listen to Beethoven on his on his old school proper vinyl record player. He would carry on listening to some classics in the room next to me as he fell asleep. It was soothing. Unfortunately it didn't help last night. 

This past weekend it was nice to chill with family on both days. Today I met up with Andrew for some Christmas edition Starbucks. I've also finished ALL CHRISTMAS SHOPPING (well everything except one thing)! Gifts are even wrapped! I hate the part where I have to wait for more than a month still before I can hand out said presents! 

Something else exciting that is happening is that our lounge is getting a much needed make-over (run by Andrew of course!). It should be ready in 2 weeks' time. Seeing as I spend quite a lot of time at home these days this will make a big positive difference to my day to day life! 

So Leonard Cohen also died last week..... What a sad day for music. He felt like family, we grew up on his music! The last 3 weeks have also been the kind of weeks perfectly described by his music... meaningful, deep, and rather sad. At least his music will never die,

We have a WEBSITE!!!!

After a few months in the making Love Life; Gift Life finally has a website!!!! Click HERE to see how awesome it is! We're soooo proud of it :-) Now all the stories we've posted about recipients on #TransplantTuesdays are all available in one place, media articles where we were featured, you can get the latest copy of the South African Transplant Society's Transplant News... it's just perfect.

The main thing that makes our website unique to anything else in the country is that you can TELL YOUR FRIENDS AND FAMILY that you're an organ donor via an email sent from our website. It's common knowledge that you need to TALK to your family about organ donation, because unless they consent to you being an organ donor, it doesn't make a difference if you were registered as one or not. The final decision lies with them. We have tried to facilitate the process... If you go to the "How can you help" tab , it will take you to a screen where you can enter the e-mail address of your nearest and dearest and we will send them an e-mail signed with your name at the bottom.

Hopefully this is the start of big things for us as a non-profit organisation filled with passion about a cause that lies close to our hearts (well lungs to be exact!). So please visit the website and show some love by telling your family of your wishes and read the awesome stories we've published so far!

Back home - discharged early.

I was discharged yesterday, after 11 nights in hospital instead of the expected 14. Both sputum samples cultured nothing. So whatever made me feel sick when admitted was obviously sorted. I've been having a really hard time getting rid of the usual steroid side effects :-( Been bloated, feet a bit swollen, body sore, muscles weak and just feeling "woozy"/dizzy, TIRED. So basically horrible all over! Based on past experience I should feel better tomorrow! Really hope that is the case! Guessing I might just be feeling these side effects more intensely because of where my lung function is at.

Still happy to be sleeping in my own bed again nonetheless, PICC line free and with my hubby and kitties. I have some really sick friends there in hospital at the moment and I'm really really appreciating being home. The past two weeks have felt rather intense to be honest.

Another fellow CF transplant lady whose story I've been following since her documentary "Love on the Transplant List", and who I've been Facebook friends with for a few years, posted this blog post two days ago. I'm so sad for Kirstie. Unfortunately I guess none of us live forever, CF or no CF. But it's just so harsh to have to be posting an update like this one when you're 27. I've been soooooo lucky with my almost 9 years with these lungs. All my love goes out to you Kirstie, you're amazing xxx

http://www.dailymail.co.uk/health/article-3916308/Pole-dancer-27-face-organ-donation-starring-documentary-just-months-live-body-rejected-second-double-lung-transplant.html

Sunday in Hospital

Got admitted to hospital on Friday after not feeling well for a few days. Been having a low grade fever and bad headaches and feeling a bit more short of breath. So after a 5 month break from hosp I'm back! Can't complain though, 5 months better than the previous 3-month breaks. And I was worried that this might happen close to Christmas and that would have been way worse.

Before this bout of "sickness" we had a great time last weekend in Secunda meeting the cutest little baby boy Ben!!!! He is soooo flipping cute. Had so much fun playing with him.

Workouts have also been going well before this week... got some new inspirational exercise clothing from Mr Price Sport. Hopefully I won't lose too much muscle in hosp now :-( Will need to make sure I try to keep on moving.

At least I also have some more time to work on my current crochet blanket. This one is for Chris (despite the pink in there!). Going to be epic once done.

Not much else to report on, although I think that was quite enough action for one week. Will be in hosp for 2 weeks.

8 years 9 months!

Tomorrow marks another lungaversary! Yay! Steadily on my way to 9 years!!! Feels unreal! Every time I see a date on an old magazine, or on the internet or at work (when I still worked) the first thing that goes through my head is "Was this pre or post new lungs?". And as time goes on I'm seeing less and less "pre-transplant" dates... Which is not surprising considering it's almost a decade now! The world was a different place! And I would have missed out on all of it but I didn't :-)

This week we said goodbye to Bianca :-( She has left us for Melbourne... very sad, but one day we will go visit and bum free accommodation from her in Australia!

Tomorrow we're off to Secunda with Andrew and Brendan to meet baby Benjamin Moore! We'll be spending the night there, so will be awesome. At least Cecile only moved to Secunda and not Aus! Excited to see her and Dean again. Not much other news, trying to see the bio twice a week now, and been working with heavier weights, so arms are really stiff today! Feels good to have sore muscles from exercise though! Made a little photo grid of all my orchids in bloom.... they are looking spectacular at the moment and our house looks great! Seven are currently flowering, one has buds that will open soon (looks like a white one) and I think there are 3 with no flowers. Very chuffed with myself, I've never had this many bloom! Most of them have been gifts over the years.... definitely a gift that keeps on giving!

Oh and we've also had some RAIN!!! It's been great, SA is experiencing like the worst drought in 25 years or something so the rain we've had these last few days has been amazing. Hopefully my garden will look a bit better now!