Monday, May 22, 2017

Lungaversary Day and sick :-(

Today marks 9 years 4 months of my life with the lungs!!! Unfortunately I'm celebrating on the couch, surrounded by snotty tissues, a head that wants to explode and a runny nose that is not compatible with a nasal O2 cannula. I have a cold :-( Woke up sick yesterday morning. Really annoying and making feel even more short of breath. Hoping this goes away quickly and doesn't turn into something worse.


Last week was filled with nephew-love and raising some more organ donation awareness. Fawn and I gave a talk at Netcare Unitas hospital to a bunch of Emergency Medical Services people. It went really well and we had a great evening. Apart from that it was just the usual... got to see Adriaan quite a bit, it literally feels like he grows every day! Love the little man so much! Unfortunately now that I'm sick I will have to stay away for a bit :-(




Thought of some more bucket-list things I need to do once I can breathe properly again one day... (So far I've only mentioned going to New York on my blog) I didn't suddenly think of them all this week, but I think it's a good idea to write them down so that I can find it again in future!
  • See more of Europe (I've only been to Sweden)
  • Go to Storms River Mouth again and do all the trails (We were there in Sept last year but I couldn't even make it to the suspension bridge).
  • Represent SA in squash at another World Transplant Games... 2019 in Newcastle would be great!
  • Run more
  • Do spinning more regularly... I only did a spinning class about 10 times, but I really enjoyed it and would love to do it more regularly. Not a cycling fan per se, but the intensity combined with the music was great!

I shall be thinking of more items for this list! Send me some ideas or recommendations!

P.S. Shaylene and I were also in the Saturday Star last week, if you want to read the article click here.

Friday, May 12, 2017

May running away and upsetting movie "Bypass"

This month is running away with me!!! It's been so busy that I haven't even had time to blog! That's a very good thing I think... can't be sitting around doing nothing the whole day. Last week was filled with family! Spent quite a lot of time with my aunt Annelie, grandmother, mom, Chrislie and Adriaan! It was super seeing Annelie and my gran again. Also pretty special to have four generations chilling together. (I'm not sure how my sis managed to escape all these photo's???)





We've also been quite busy with LLGL... Had a photo shoot last Sat for something that we're working on, and on Weds we attended the premiere of the new local movie about organ trafficking that opens at cinema's today, "Bypass". I was really rather upset by the movie, as it portrays organ donation in SUCH a bad light. They basically show poor people in Africa being hunted for their organs to transplant to rich tourists. The movie itself is not badly done, it's just the message regarding organ donation that is SO DAMAGING in our society where less than 2% of the population are registered as organ donors, and the public is riddled with misconception already. They also state that it's based on true events! I'm not aware that anyone in this country has EVER been killed for their organs! So WTF??? The damage that this movie could do was illustrated by someone who attended the premiere commenting "And this is why I will never be an organ donor" when we left the theatre.

We spoke to various people involved in the film afterwards, and they said that the movie should make people aware of the shortage of donors... while that is true to an extent, I feel that the horrible scenes of them throwing a young girl in a van in order to harvest her heart after they found her blood group info in a local clinic, will be remembered by a viewer much more than the so-called "moral" of the story. We posted our review of the movie on our Facebook Page, so check it out if you want to... (Also, please "Like" our page if you haven't yet!) I'm adding the trailer of the movie below, as it might give you an insight as to why we were so offended by it. If you have seen the movie please comment and let me know what your thoughts are!



Monday, May 1, 2017

Pretty good week all things considered and MAY!

Seems like Monday blogging is my thing now! And MAY has arrived! Can definitely feel it in the weather. Health was a bit better this week. Maybe due to the increased cortisone. Just taking it one week at a time.

So the highlight of the week was going to the "Kamers/Makers" exhibition/fair/event on Thursday with my sis. Pierre took care of Adriaan, so Chrislie and I had an outing by ourselves! The only (and very) limiting factor was the battery life of my portable oxygen concentrator, I tried to keep the setting as low as possible to get the max time out of the visit. Did fairly well I think. It took place at a fancy Boys' School, St John's College. The place is beautiful! I hope those boys realise how privileged they are to attend a school like that! Very happy to have finally seen it now.

It was also the first time that I used my "disability" sticker to get better parking. The time has come to put the feelings of pride/self-consciousness/ away and prioritising what I spend my energy on. Walking long distances in a parking lot is not always an option. If I only need to buy like 1 item at the shops and I have time on my side I don't mind walking far, but with an outing like this where I can't charge my oxygen and I'm a tight time limit then I can't afford to use so much energy just to get to the entrance. Anyways.... we had a great time and I bought 2 very cool items... the succulent container and the picture of a girl holding a cat! Love it!









Also had some friends over for a braai yesterday and finished crocheting my gloves (they didn't turn our great... my forearms are too fat and I had to improvise! But they will do their job.) Oh and Chris bought me some stunning orange and purple tulips! The orange ones opened up this morning so posted a pic of those. Tomorrow evening Annelie and my gran arrives!!! Very excited about that! Have a great week!



Monday, April 24, 2017

How Things Are

This past week has been tough lung-wise. I've been more short of breath than usual, and don't know why. I missed both sessions of bio last week. I have sent in a sputum sample, that came back clean (even though it was gross and green and tasted like shit). I had a blood test done to check for infection... there is nothing. I was mentally preparing for a two week hospital stay but there is no reason to admit me as I don't have anything wrong that can be treated. So what it boils down to, is a case of "It is what it is". I have turned my oxygen up and am doing less. Going to give bio a try again tomorrow morning because SOME movement is better than none. Saturday marked another lungaversary, yay!


On to some more positive stuff... Adriaan is amazing, soooo cute. Definitely the best baby EVER, And definitely motivation for my lungs to keep going! Helped my mom to babysit him on Sat evening, we had so much fun. Three weeks of him being in the world today! Sorry for all the baby pics but too good not to share!





Not much else happening... Peppy, our black kitty is going for a dental procedure tomorrow :-( Poor kitty... he is the sensitive one and my heart breaks thinking of him all alone at the vet. He has never been alone before, the other cats are always with him! Oohhhh and my aunt from England, Annelie, and my gran are arriving in Joburg next week Tuesday to meet Adriaan! Can't WAIT to see them again. It's been about a year since I've seen Annelie and probably more than 2 years since I've seen my gran??? She lives so far away and is not a fan of flying... so with all the stuff happening in the last few years with my health we just haven't been to that side of the world and definitely cannot travel there now. So there is that to look forward to. Have a great week!

Monday, April 17, 2017

Soulfood

Ditha and Riaan were here for the Easter long-weekend from Cape Town. They stayed with Brendan but we saw quite a lot of them. Haven't seen them since their wedding in May last year so it was quite an overdue catch-up. We had a braai on Friday, watched the movie Lion on Sat at Brendan's house and afterwards celebrated Riaan's 30th birthday at Andrew's house. Yesterday we had brunch at Vovo Telo and supper at Brendan's house again. Today has been spent on the couch and tomorrow will be the same. Really really tired, but it was good for the soul.

Don't have much else going on. Lungs are not great, not much to be done about it :-( Saw the below quote in the week and it was more fitting 10 years ago, but still true to an extent. Getting quite tired of this phase. There is so much I wish I could do right now. Looking forward to seeing my little angel of a nephew this week. Can't wait to hold that precious little body.


Have a great week... below some pics of this weekend.








Tuesday, April 11, 2017

Welcome to the world Adriaan Eugene Pretorius!

On Monday the 3rd of April the most beautiful little boy came into the world on his grandfather's birthday (Pierre's dad...Eugene). We all fell in love with this little guy instantly. He has the most angelic little face. His hands are sooooo animated and always moving, He has the fullest little lips, and the cutest cheeks. And sometimes he gets this little frown on his face. He HATES changing clothes or nappies. He loves sleeping on your chest or in your arms. He also loves the sound of my portable oxygen machine! He has a very very healthy appetite. And he is loved SOOOO MUCH by many people! He is perfect.

Experiencing this addition to the family has to be one of the most amazing things I've been able to see with these lungs, all thanks to my donor. I would have missed out on this by almost a decade. Soooooo grateful xxxxxx








Friday, March 31, 2017

Bye Bye March... Hurry Up April!

The last day of March is here! This means that tomorrow is the start of AWESOME APRIL! The month in which I'm going to become an aunt!!!! My sis will be 39 weeks pregnant this Sunday. So we're all holding our breaths, waiting to see when baby will be coming! So much of excitement and can't wait to find out if it's a boy or a girl!


Before today I've been feeling less tired than last week, so that's been nice. Today however the week's activities have caught up with me feeling pretty flat. Trying not to do much and watching The Walking Dead. Good way to end a busy week I guess.




Last Saturday Chris and I went out for lamb and a cocktail at Turn 'n Tender in Parktown, which was amazing. On Monday I saw my Dermatologist, (she freezed off five little warts - two on my face and three on my chest... these are side-effects of my immunosuppressants that I take) and had lunch with my sis who is on maternity leave now at Paul in Melrose Arch. On Tuesday I had bio and bought some wool for my next crochet project. On Wednesday I went for blood tests (I was supposed to see my lung Dr yesterday but my appointment got moved) and my dad took me and my sis out for lunch! Yesterday I had bio again, followed by spending some more time with my sis... doing a bit of shopping... and Chris and I went to see a movie late yesterday afternoon. So the week as flown by!




Today has been a political shit-storm in SA after the president  reshuffled his cabinet and screwed over the country... in a nutshell. This after one of the men who fought for the freedom of this country and was in prison with Mandela, Ahmed Kathrada died and was buried this week as well. I drove past the funeral on Wednesday and it gave me goosebumps. The below statement made by Jonathan Jansen was very touching and sums it up pretty well. It's so sad how one man can care so little and mess up a country so badly, as he seems set on doing. As I do with almost everything in life, I thought back to what the political situation was in 2008 (because apart from getting my lungs in Jan that year, I see 2008 as the year I would have died... so I often think about what's happened since then. Thabo Mbeki was still president, COPE hadn't been formed yet, the EFF didn't exist, Mandela was still alive obviously... I don't follow politics a hell of a lot but bottom line is a LOT has happened! A little worried about what the next 9 years will bring.

Wednesday, March 22, 2017

Lungaversary Day Again


Another lungaversary! Nine years two months. Or as Chris tells me 110 months. These poor lungies are pushing so hard to keep me going, and doing a great job. Love them SO MUCH. Feeling really exhausted :-( Waking up with a headache and more tired than I was going to bed. Hopefully one of those random "feeling crap" weeks that randomly seem to happen and resolve itself again.

We got back from Magaliesburg yesterday, where we celebrated my dad's 60th birthday. We spent 4 nights in a very comfy cottage with great views. It was perfect for our current situation, as it's only about 90 mins outside Johannesburg, it was small enough for my oxygen pipe to reach everywhere, even outside. My sis was 37 weeks pregnant on Sunday! Only 2 or 3 weeks left to go :-) Did a few small walks with my portable O2 as well, which was nice. Check out the amazing pics...












The other cool thing I did last week was to go to the new Paul in Melrose Arch with Andrew! The first South African version opened very recently (it's European... I've seen it in London before). I wasn't disappointed, the food was GREAT! Go there if you haven't yet and are in Jozi!