Friday, June 23, 2017

Yesterday was 9 years 5 months

This week was pretty bleh again, but hopefully things will start improving soon. Yesterday was another lungaversary. pushing closer and closer to 10 years. Having quite a few lung-related dreams naturally... 2 nights ago I dreamt that I had to "prove" to someone that I can't breathe well. I tried to run, in order to show them how I will literally just pass out if I tried, but I didn't... I managed to run just fine, apart from my leg muscles not being used to it anymore. They didn't believe me that my lungs aren't working properly anymore :-( I failed the test.

I mentioned this briefly two posts ago... but it really kind-of sucks in some respects when you're in end stage organ failure but look "good". I'm really glad my weight is good and I'm not  complaining about NOT looking BAD (no person ever would!), but you get tired of hearing how "GOOD YOU LOOK" when your chest feels like it wants to explode. Rather tell me "You look like you need new lungs" LOL! Or "You look tired"... or "You sound really out of breath". That makes me feel better... like I'm not imagining these symptoms. Last time I waited for lungs I looked so much worse than now, and a lot of it is just hard work  and the result of a different lung disease.


On Sunday we celebrated Father's Day with my parents. Had bio on Tuesday, which was so-so. Not too bad. Did some random errands in the week, saw my nephew... nothing exciting, although seeing Adriaan grow is ALWAYS amazing.



Oh I also attended the National Colours Ceremony last weekend, representing LLGL, where the new athletes forming part of Team South Africa for the World Transplant Games were awarded they Protea blazers. The Games start on Sunday, and I feel like I should avoid Facebook to try and curb my jealousy! Wish I were also flying to Spain tomorrow.


On a positive note though, LLGL released our posters this week!!!! So proud of our hard work! Check out the posters here if you haven't seen them yet!

Saturday, June 17, 2017

Rough Week and Silver Lining

It's been almost 2 weeks since I've blogged! This last week has been very rough physically and mentally, and one day I will blog about it, but the time's not right yet. (Not trying to vague-blog, I'm promising a good post in the future!).

Highlights of the last week.... Fawny turned 30! We had a ball of a time at the new Rocket in Bryanston. Had a great time, would have been even better if I didn't have so much trouble trying to find somewhere to charge my O2! And if I could just generally let my hair down and have a bit more fun, but "letting your hair down" can be a bit hard when you struggle to breathe. However all things considered... I had a fantastic time.



Also chilled at Brendan's house twice since previous post... last week Friday I went there for some amazing soup, and yesterday we went for an afternoon braai. Also spent some quality time with my nephew, the gorgeous Adriaan.



On Thursday I was having a very bad day but got so spoiled by my sis (and I'm guessing Adriaan also had a hand in there because he loves his aunt) with roses and donuts!!!! Chris has also been soooo supportive. Tried to get love from Pumpy but failed. He ran away. As you can see,




At the end of the day... what has been amazing in this strange week is how many people I have who pray for me, and care about me. Not trying to brag about it obviously, but in a world where you see so much negative stuff all the time, you get some AMAZING PEOPLE. I've been overwhelmed by love, and that is pretty amazing. I'm a very lucky girl!

Sunday, June 4, 2017

Hello June, Hello Winter.

June is here! Winter too.... Not a fan of winter, but luckily Joburg winters are short. Two hand a half months from now things should be heating up again. Apart from the usual annoyances that winter brings.... everything outside here is dead and yellow, cold nights, smoggy and smokey air, DRY air... it's also so much more exhausting to get dressed! In summer it's easy, you throw on a dress. Now getting jeans on is tiring, putting boots on is tiring, shirts, jersey/jacket... I need to catch my breath after getting dressed!


It was great not being sick with my cold anymore last week. I could go back to bio (I was pretty useless), went to the shops with my sister and Adriaan, we introduced Adriaan to Andrew and had a yummy lunch at Paul... so back to "normal". I also finished my "corner to corner" blanket that I started at the end of last year (I've made a few things in between), and it looks great.


Cystic Fibrosis awareness month is also over now. Post transplant with CF is very different to pre-transplant, so it's been a very long time now that I haven't felt like I'm 100% "CF patient" anymore. Yes my pancreas is still a bit annoying but it doesn't affect my quality of life much. Even now with bad lung function and being back on oxygen 24/7 for more than a year now, it's COMPLETELY different than with my CF lungs. The mucus situation is very different.... there is almost nothing. My oxygen saturations are better than they were but I "feel" lower O2 sats MORE??!! Previously I would feel pretty good and considered it a great day if my sats without O2 was 83% (A bad day was in the 70%'s, and I wasn't even on O2 all the time). Now I'm gasping for breath when they're 85%.

Also, if I sit really still and take off my O2, my sats don't drop too badly... my heart rate just goes up. However as soon as I move the sats drop immediately. I also "look" much better. I'm not underweight or thin... I'm less blue, apart from the oxygen on my face I LOOK fine. In terms of my daily nebulising routine.... I neb with Colistin antibiotics for the Pseudomonas that I had last year twice a day. With the old lungs it was  Duolin, Pulmozyme/hypertonic saline, and also the Colistin antibiotics AND physio. However now nebbing doesn't make my breathing easier at all. Duolin doesn't open up my lungs, there is no relief that came with coughing up some junk. The Colistin just MAKES my wheezy. So basically when I'm having a bad day there is nothing I can do about it. I just have to wait it out.


On a more positive note... went to a great Girls Night In at Fawn's house last night. We watched two rather bad movies ("Don't Breathe" and "Mother's Day"... the latter was SHOCKINGLY bad!!!), but it was great fun. Also got to spend some "quality time" with Fawn on Friday when we were waiting for our lung Dr!



The coming week should be pretty productive, a few outings planned. Let's hope June is a great month.

Friday, May 26, 2017

Bucket-list item... craving a swim in the sea

So I haven't been on the beach in my bikini since early Dec 2014 (and that was just one day in Cape Town... not a beach holiday). Before that was in April 2013 in PE (also only one day swimming in the sea, 2 days on the beach) ... and that's the last time I swam in the sea. To say I miss it is an understatement. I regret not making more of an effort to get to the sea in these last few years while my lungs have been slowly fading away. Unfortunately leave from work was limited, and we maximised that time by going to San Fran and other "bush" holidays not involving the beach.


As soon as I'm able to one day, I think a trip to the Durban-side of the world will be in order... only a 6 hour drive away and the sea is nice and warm. I used to go to the beach almost daily growing up in summer. There is nothing like the sound of the beach... the feeling of coming up after the first time you dunk your whole body under the waves. Collapsing down on your towel breathless (because you exercised, not because you put on a pair of skinny jeans) after a long time playing in the waves, feeling the sun beat down on you. Obviously now I'm older and wiser and immune suppressed so unlike trying to tan as a teen, I will be lathered in SPF 50! There is also is certain type of appetite that only a few hours in the sun, sand and sea invokes. We always scoffed down cookies and tea, biltong or Salticrax when we were back home, after taking a bath to get all the sand off!

These pics are all from the last beach visit in Dec 2014. I did get rather out of breath but nothing like I would now (right now I would collapse and drown as soon as one wave hits me LOL).






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.