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