Saturday, January 14, 2017

Busy week ahead leading up to lungaversary!

Had a pretty laid back week. Cleaning the house, bio, organising meds, buying groceries and making suppers... Carli (my friend from school... we got tattoos together when we were 16) arrived yesterday for a visit. Last night was the start of my 9 year lungaversary celebrations... played Cards Against Humanity and ate lasagne with some friends, always guarantees a lot of laughs! We've also been having some nice rain, which is great after a very dry year last year, and Joburg is looking amazing.



Went with my sis to Lifestyle Garden Centre today, feeling more short of breath than usual, probably hormonal, ugh. Next week is super busy... Carli is going to be here, and Brian is arriving on Thursday for the interview that he is doing with me for his composition (see previous post here for explanation). Carli is leaving again on Sunday morning and Brian on Sunday evening. Will definitely be showing Brian around Jozi a bit!!

Chris's grandmother passed away so he will be going to Cape Town from Tuesday to Sunday morning :-(. In between all of that I have to go to the dentist on Monday morning for a tooth that I'm worried about, and having my eyes tested on Tuesday (because it's been almost 2 years and my glasses are physically broken and keep falling off my face). Next weekend the lungaversary celebrations shall continue as the actual anniversary day is next Sunday!!!



Saturday, January 7, 2017

First week of 2017 done!

The first week of the year has been good. I love how everyone is coming back from their holidays and friends are here again. I've also been back at bio this week. That was ROUGH after the 2 weeks off, but did good I think. Definitely a very necessary activity for me!!! I have zero cardio capability but have to keep pushing on with what I CAN do, even if recovery after every activity takes a few mins and I feel like I'm dying. I am normally not a fan of the corny "LIVE, LOVE, LAUGH" words appearing on everything (linen, crockery, ALL HOUSE WARE, some people just put the words on their walls like art) trend that has been going around (and hopefully ending soon) - sorry if I'm offending anyone! My point is that I love this shirt that becomes so ironic when I wear it! It's also conveniently a summary of everything I want by the end of this year, should I forget :-)


Something else that was awesome is that I got to see the final product that a student did using me as inspiration. She had to do the framework of a book pretty much for her main Book design and Editing project of the year. Well done Chanelle it looked amazing! So much of talent! These illustrations tell such an amazing story.






Chris was away this week with my dad to Mapungubwe, so it was quite nice to have the house to myself and a little change in routine. Had the most amazing evening last night at Brendan's house! We had such fun, and with the rain that started falling ended up having a mini dance party in the kitchen (where I could conveniently plug in my portable O2 and turn it up!!!!) Haven't had as much fun in a long time and got home way after midnight via Uber! Paying for it today (and possibly tomorrow!!) but was so worth it.





So all in all very positive vibes for 2017 so far! That's exactly what I need.

Monday, January 2, 2017

When you're not invisible

A while ago I blogged about people staring at me when I wear my O2. I've learnt to avoid eye contact and just get on with my business, However recently I've had quite a few interactions with people as a result of the O2. About 3 weeks ago a lady in Clearwater Mall came looking for me after I left the bathroom and said that she wanted to pray for me... and I let her, after briefly explaining my health situation. I've also had a guy on the golf cart at the hospital (that transports people to the parking garage etc) pray for me. And an Uber driver. Obviously a lot of people pray for me in general but not normally strangers.

This past week a teenage girl at Cotton On walked up to me and just said "I just want you to know that I really hope you have a great day". That was very sweet and sincere of her. Last week Thursday I went to Woolies to buy groceries, then picked up take-out, followed by the pharmacy. At each one of those stops something O2 related happened... At Woolies the employees know me by now, and I get comments like "I didn't see you last week", or "where is your husband?". At the take out place the guy recognised me and said "I remember you, you were here a while back with 3 friends, you sat outside!". I'm pretty sure he only remembered be because of the oxygen, but I could be wrong.

At the pharmacy the cashier asked me why I needed O2... Didn't feel like explaining the whole rejection thing so just said "I have Cystic Fibrosis". To my surprise she replied "Yes I know about that, One Republic did a cool song about it or something (cue: pic below). I hope 2017 is your year". I have had people stop me in the mall asking where I got my portable O2 from, as they know someone who is on oxygen but cannot leave the house. Some people have asked me if I smoked, because they knew someone who smoked and ended up wearing O2 before they died. About 2 months ago the barista at our local coffee place pointed at my nasal cannula and asked if it hurts... I replied "No, it just helps me breathe better". So she said "No - I mean in here..." pointing to her heart. I didn't expect that one. She continued saying "It must be really hard to be sick, and you're so young". I just nodded and said I'm OK. Didn't really know what else to say! These are just some examples I could think of now, but there are quite a few more!



I've realised 2 things from this...

a) People notice when you are different, and it has given me new respect for people with other physical disabilities, especially ones that will never improve. It's hard to stand out of the crowd and not being able to just run a quick errand without being noticed because you're physically different. At least I am hopefully only "temporarily" disabled, but being in a wheelchair or on crutches or anything that makes you look different permanently must be really bad. It's not nice when people feel sorry for you or treat you differently. Sometimes you just want to fly beneath the radar.

b) Secondly, most people are really nice. People who we overlook in our daily life because we are too busy, deserve more friendliness. Chris has always been very good at chatting to strangers and making small talk but I'm not. When you the bad side of humanity in the news so much it's been refreshing to see the caring side of everyday people. So be friendly and show some kindness to the people you often live past in everyday life.


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

Saturday, November 26, 2016

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!


Friday, November 18, 2016

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 :-(






Wednesday, November 16, 2016

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,