Sunday, August 20, 2017

In hospital

My cold didn't blow over, it just suddenly flew into my lungs. I started being feverish on Monday evening, which carried on throughout the night. On Tuesday morning it felt like my lungs were DROWNING in very gross mucus. It felt like I had instantly lost 10% lung function. It was the first time with these lungs that I needed a wheelchair to get around the hospital. I couldn't cope with walking, even with my portable O2 on max. Luckily I was able to see my Dr pretty quickly and got  admitted, had bloods, x-rays done and PICC line placed for IV's. My veins have been through too much in the last 33 years to cope well with normal peripheral IV access. A PICC line is a long line that gets pushed up from just above my elbow all the way around my shoulder towards my heart. It's an absolute blessing... makes a hospital stay much less dramatic and requiring less needle stabbings (and blown veins)... plus I have more movement available in my hand/arm.

So far the only test results of interest show that I have Rhinovirus (basically a common cold), and had a high infection count (CRP). The latter has come down a lot now at least. I'm currently on antibiotics and a higher than normal dose of steroids, although luckily that is already being decreased. Still waiting for the results of the sputum tests. Feeling loads better already. I managed to walk to the coffee shop twice yesterday (with Chris carrying my portable O2), and lungs starting to feel more open. You know you're feeling better when you are requesting earrings from home at least! (The below wasn't a bad selfie, I was checking out my ears)!

Had some great visitors yesterday... Chris was here the whole day, bringing with him a Latte and my favourite Almond croissant from The Argentinean. Then Andrew popped in with some AMAZING hot chocolate. Chrislie, my mom and Adriaan also came to visit! Haven't seen the little man in almost 2 weeks! I was feeling so sick on Sunday that I didn't want to risk making him sick. He is such a little heart thief! I was also joined for lunch/coffee by Brendan, Marius, Trevor and Ryan later in the afternoon. Even got some flowers! So everyone has really helped to make my Saturday fly past by keeping me busy! I've got some great friends and even more amazing family. Have a great Sunday!

Monday, August 14, 2017

Crazy month for organ donation awareness, wedding anniversary and now I'm sick

Two weeks ago LLGL along with the transplant coordinators of Johannesburg started an awareness drive in the Joburg hospitals. It's been hectic and amazing! I've attended the drive at four of the hospitals so far. The conversations we've had with nurses and doctors have been amazing.... eye opening stuff! This work makes me SO excited! It is definitely my passion in life. We've also had some amazing volunteers assisting us!

A week ago was my and Chris' 7th wedding anniversary. We went out for brunch and an ice-cream. Wasn't feeling my best so spent the rest of the day watching TV.

I've had a cold since Sat unfortunately :-( Not feeling good at all right now. Throat sore, sinuses gross and sore, lungs tight. UUGHHHHH

Friday, July 28, 2017

Andrew's birthday, Jo-Mari's visit, prepping for Aug and small update on the lungs

I've been so "busy"! It's great :-) By busy I mean I did one activity per day. It's all relative. Two weeks ago we celebrated Andrew's birthday with a bang! I had lunch with him on the day, and on the Friday night we went to Beefcakes in Illovo. It was such a blast, I've never had as much fun sitting down and watching a show! Had to turn my portable O2 up all the way to 5 litres!!! (Normally on 3 or 4 litres). I was useless the following day, but it was well worth it.

I received the most amazing "Open me when" package from my cousin Mia in Jeffreys Bay! It's such an awesome concept from Rare Diseases! It's a bunch of parcels with instructions like "Open me when you're scared", "Open me when you're hungry", "Open me when you're in hospital" etc. It's amazing, so far I've only opened two, so still a few to look forward to!

My university friend Jo-Mari who works in Quatar was here last weekend, so got to catch up with her as well. She had a stop-over in Joburg on her way down to PE. Such a treat.

My sis has gone back to work, so seeing much less of my cutie-pie nephew :-( Will be seeing him this weekend at least! It's my sister's 30th birthday tomorrow!!! The two of us will be going to a spa tomorrow afternoon for some pampering... wish I could make full use of the spa facilities... ie the pool, but will be freaking awesome anyway. Unfortunately I broke my stupid nail off yesterday when I picked up my laptop, so good luck to whoever has to do my nails!

I also met another lung-friend in real life this week... Martie! She has Pulmonary Hypertension. Was great finally getting to chat properly, although it wasn't for long. We will def be doing it again.

So this post is basically my life in pictures it seems... sorry! Don't really have anything substantial to say. I had a lung check-up a week ago. The only thing that has changed is that my 6 minute walk test results were crappier. I could walk the same distance (a little further than last time in fact), but my oxygen sats on 5 litres of portable O2 dropped to 77%, VS 85% in April. Saturday was exactly 9.5 years post transplant for me. Ten year lungaversary getting closer and closer...

August is going to be super busy, it's organ donation awareness month! (as well as my birthday month!!) Love Life; Gift Life has soooo much planned in terms of raising awareness in Johannesburg hospitals in collaboration with various transplant coordinators. It's going to be a good month.

Thursday, July 13, 2017

Fitness declaration, dreams and nostalgia

Today I miss exercising a lot. Intense exercise, not the sad weight-lifting that I currently do. Spinning, playing squash, running... It's been 4 years since I've been able to do this properly. Four years of gradual deterioration. Preceded by 5.5 years of the most amazing breathing ability ever known to myself. I miss it SOOOO MUCH and wish I had worked harder at my fitness when I had the chance. It wasn't easy with working full-time, but I wish I pushed myself harder. I should have played more squash, done more spinning classes, just more of EVERYTHING CARDIO. 

There is nothing like the feeling of your lungs FILLING with air, and your heart beating, not because you climbed a flight of stairs and want to pass out, but because you are ALIVE and MOVING. I think it's taken me 23.5 years of shitty breathing, those 5.5 years of brilliant breathing, and these 4 years of losing it again to totally appreciate and realise how brilliant it is and how it should never be taken for granted. 

If I ever get the opportunity to breathe freely with healthy lungs again, I will make it my goal to push my body to its physical limits. I will try new activities, I will join a squash club... I want to run further than before. I want to do spinning again! I want to SWEAT! I am able to do so little at a time now, that I haven't sweated properly in AGES (except when my blood sugar drops too low, but that's a whole different topic!). I swear there will be no stopping me... 

This is what I dream of... it keeps me motivated. It pushes me to do what little I can right now. One day I will escape this frustrated feeling... one way or another. Until then these daydreams (and sometimes actual dreams at night) will keep me going. Patience... it will be worth it.

Tuesday, July 11, 2017

Meeting Carmen in person & Louz and Wouter's visit!

I've had an amazing couple of days. It feels like my birthday or something with the friends that I've seen and the unnecessary presents that I've been surprised with! Feeling very lucky and blessed right now. Louzanne and Wouter arrived just before lunchtime on Friday. Chris and I picked them up, and we met up with Chrislie, Adriaan and Andrew at Paul for lunch. On Friday evening we had a games night ar Brendan's house which was so much fun.

On Sat we had a bit of a historical tour of Pretoria. We went to the Union Buildings and Melrose House. It was followed by a Starbucks and a completely different kind of Pretoria culture! On Sat eve we had supper at Casalinga, an Italian restaurant in Muldersdrift. I've only been there once before but the food is AMAZING. We weren't disappointed. Super busy but awesome day!

On Sunday we spent a chilled day at my parents' house. We also watched the movie "A United Kingdom", which is a must-see!!! I was pretty wiped out after Saturday's activities. Yesterday we had brunch with my sis and Adriaan in Melville, before heading for Constitution Hill. I've never been there before, and so glad I was finally able to! We didn't have time or O2 battery-life to see all of it, so need to go back at some point! If you live in Jozi, you really need to go on a guided tour there!

So all in all a brilliant weekend! Miss my friend so much, wish we lived closer to each other!!!!

Today I got to meet a NEW friend in person!!! Carmen!!! We've been chatting for a few months now, and she's in town at the moment to we met up! Yayness! It was great, like we've known each other forever. I was so spoiled with gifts, and completely unprepared to return the favour! Next time! I must say, since I stopped working and have gone onto disability, I've met so many amazing people through Love Life; Gift Life and just in general (like Carmen). Each chapter of life has it's own surprises and benefits. Trying to look past the annoying-ness and frustration of my current HEALTH situation and appreciate the quality time I've been able to spend with amazing new people and my favourite "old" people.

On a sad note though, a girl that I knew who was waiting for lungs too lost her battle on Friday :-( I wasn't expecting it to happen and really hoped that she would get lungs :-( It gives me more motivation to work hard on LLGL, but at the same time it makes me feel so hopeless and like we're fighting a losing battle sometimes... *sigh*