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,



Monday, November 14, 2016

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!

Wednesday, November 9, 2016

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, October 30, 2016

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.

Friday, October 21, 2016

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!

Thursday, October 13, 2016

Fat, muscle, weight, CF.... all things Body Image

Disclaimer: These are just MY observations regarding weight and body image, I realise it's not the same for everyone... even some other CF patients may not necessarily agree with my views.

Today I watched a documentary called "Thin"... it follows the story of a few women in an eating disorder rehabilitation clinic. It's not a new documentary/movie, I think it came out in 2006. It was so interesting and sad to see the way these girls saw food and their bodies and how it absolutely ruled their lives.... Ultimately the one lady passed away at the age of 33 due to her eating disorder (anorexia I think it was). Their world is/was sooooo different to the one I mostly grew up in, where I was always encouraged to eat, and weight gain was largely seen as a good thing.


There were times though as a teenager (during some really healthy years) where I felt fat too and tried to lose weight as well, so I haven't spent my whole life trying to gain weight. I probably also gain weight easier than the average CF person from what I've seen and heard. Back when I was 16/17 years old I felt "fat" (I think I weighed about 56kg back then... that's 123 pounds). I went on an all natural diet, cutting out all processed food and sugar and even a lot of fruit and vegetables per the advice of some sort of alternative medicine lady who thought I would have less lung infections this way. (I didn't change any meds, so just tried to supplement my medication with a different eating plan.). After following this strictly for a few months, I DID manage to increase the gaps between antibiotics by a week or so, but at a terrible cost. I lost quite a few kilo's picked up pneumonia or a bad flu or something and lost more weight, along with lung function. I ended up losing like 10 kgs in total. At that point my parents were feeding me anything that I was willing to eat. Even though I was happy about the initial weight loss, my body and lungs took quite a knock from the whole episode, and I never managed to get my weight up that high again pre-transplant, no matter how much I ate or how much Ensure I drank.

The point of that story is that I realised that for me (and this is what those eating disorder girls didn't see) weight = HEALTHY. Looking back at my life, I've clearly been the sickest and weakest when my weight was at its lowest. And there is a reason why you need to be a specific weight in order to be listed for transplant... it means you are stronger. And your body needs to be at a certain weight in order to function properly. I've also generally been physically fitter at times when I was fatter. So at the end of the day EVERYTHING has been better when my body has some extra kilo's to play with.


I've seen friends with CF BATTLE to gain weight. They have feeding tubes inserted surgically in order for them to get night feeds and extra calories. They go through a lot of pain and discomfort just in order to gain a few precious pounds. This is of course on top of taking enzymes to digest the food every time we eat and giving yourself insulin shots if you have CF related diabetes. Reaching that goal weight can be a full-time job.

Other people often joke and say CF people are lucky that they can eat more than normal people and not gain weight (or not AS much), but when you're that desperately trying to gain weight it really IS harder than losing weight! I will admit that I HAVE often enjoyed the fact that generally I don't have to ever restrict my eating (usually only when on high dose steroids and sugars are acting all out of whack), so yes SOMETIMES it is nice. But that is normally the exception. I have also hated having to FORCE my self to eat (or having a parent do it) when you can't even breathe properly, have zero appetite and eating makes you more out of breath - as does a full tummy, and your life literally depends on you gaining weight. So no... it's generally more unlucky than lucky I would say.

So then apart from people glorifying unhealthy skinniness, in the last few years I've seen THESE types of annoying memes/jokes/motivations do the rounds:


This makes me SOOOOOO ANGRY on so many levels!!! Firstly, who the f%$k decides what "real men" like? A bunch of bored women? And are they implying the naturally thin  girls or girls with health issues or who are skinny for whatever reason are only fit for dogs???

Can society please start glorifying ALL body types that are normal and trying their best at being healthy? How cool would it be if STRONG was something women aimed for instead of skinny. What was also messed up in that movie I watched was that the girls weren't allowed to exercise for fear of them losing more weight. How about getting them to build some muscle rather and gain weight in the process too? Teach them that strong > skinny.

In conclusion.... this post might be a bit all over the place and random, but I'm jotting down my thoughts and observations regarding the topic. Right now I'm probably the "fattest" I've ever been, at about 59 kg (130 pounds). So my BMI is 23. (I'm 1.6m tall). On the higher end of normal (apparently normal is 18-25) and I'm proud of it! It means I'm stronger and have more reserves in case of an infection, and I will survive longer. So I LOVE my fat rolls and my muscles (they do as much as they can with what my lungs allow them to) at this point in my life!

So what I hope people will take from this, is: if your body is healthy and happy, don't wish you were prettier or thinner, change your thinking to being STRONG. If you DO weight too much, getting stronger by getting fitter will automatically result in losing weight... although everyone knows muscle weighs more than fat... proving my point. And obviously this is just physically speaking... this post not about intellectual stuff or feminism etc etc. Getting off my soapbox now!

Thursday, October 6, 2016

Back to reality and utter FOMO about not taking part in Nationals

Since Anna and Casey's return life has just been getting back to normal. Had three Dr's appointments last week, all were fine, lung function was even up a bit. Clearly holidays are excellent treatment. Three of my orchids have started flowering... below is one of them (saving the others for future blog posts... just in case nothing else happens in my life)


My friend Louzanne (long-time friend since age 5 or so) was here for work on Friday and extended her stay to include the weekend. Such a treat spending time with her. Miss her so much. On Saturday we went to a craft market-thing called Kamers (used to be called Kamers vol Geskenke, which is Afrikaans for "Rooms full of gifts"). They normally have an annual market here and have always wanted to go. It was great! We also had supper with my parents, and watched the new Bridget Jones movie. That was also lots of fun. Mostly just catching up though!




This week has been pretty chilled... went for bio again, might be stiff tomorrow... had a pedicure with my sister on Tuesday, which was a nice treat. Car also had a flat tyre so was stuck at home on Monday. Luckily Chris fixed it the same day, yay. Yesterday also marked exactly 8 years since I met Chris. Not sure if I've ever mentioned this but we met on an internet dating site and had our first date on the 5th of October 2008.

The National Transplant Games is taking place in Joburg this weekend. Registration happening today already and the AGM tonight. When I was still involved with transplant sport I was on the committee organising the Games. For health reasons I've had to leave the committee. I obviously also cannot participate anymore. Two years ago when Nationals were in Stellenbosch I couldn't play squash or do the race walk anymore, but did some field items and Petanque. This year I'm not doing anything. Rather sad and depro about missing out on all the fun. And not experiencing it in my own city, Maybe one day by some miracle I will take part again and play squash again and go to the World Transplant Games again.

Monday, October 3, 2016

Local Touristing with Anna and Casey

In between all our adventures around the country we also showed Anna and Casey some local spots... The Apartheid Museum (which was AMAZING,,,, my first time there and we didn't have a chance to finish up properly as we ran out of time so have to go back again), the Voortrekker Monument (for some insight on some of my forefathers and a really stunning monument, the Union Buildings and Nelson Mandela Statue (I haven't seen the statue yet myself and it was awesome!)







We also exposed them to some Cape Malay food at District Six Eatery which was YUMMY and the best milk tart ever... I took Anna shopping in Sandton City and we got matching cat books. Also note the matching kitty t-shirts Casey got us with a pic of a kitty that ate too much.... basically what Anna and I do the whole time. They were also fascinated by the big traffic cones we saw at Impala centre.





I also took them for a Saturday afternoon drive through the "scary and dangerous" Johannesburg CBD (I think my driving was scarier than the location). We also had brunch at the best Lemon Meringue spot in Jozi... the Silver Birch at Lifestyle Garden Centre.

I think I've covered everything now! Finally! It was a great trip. Don't know when we will see them again but soooo fortunate to have had this time together. AND that my health lasted throughout the trip.... We were really worried after January's lung collapses and with my lung functions dropping over the last few months. But I made it and the trip was awesome. It would have obviously been better if I could breathe properly and not have to hold back physically and the O2 concentrator didn't take up so much space in the car and I didn't have to worry about all the extra stuff I need to pack these days. But all things considered I was very fortunate to have experienced this and seen all these places again that are so close to my heart. And that my health didn't deteriorate during the trip and we didn't have to rush back for any "medical emergencies",

I don't know what the future holds but I really hope that more travelling will take place one day. We will be going somewhere close by in March for my dad's 60'th birthday so that should be a little something at least.

For now it's back to reality... Keeping on keeping on and making the most of what I can do.