Friday, October 30, 2015
It's GREAT to be back home!!!! Wednesday was BUSY, stocking up the house, doing laundry, slept late, just enjoyed being HOME. Thursday and today at work was also good. NOT BEING IN HOSPITAL IS GOOD!!!!
Three of my orchids started blooming, and the three kitties were angry at me initially! They were not impressed by my return at all. However when I woke up during the night on Tuesday night Peppie was lying against me :-) As he is doing again now. So I guess all is forgiven. (When I got home he literally saw, me, turned around and ran outside).
Tomorrow Chris and I are going to the Titanic Expo in Rosebank (won tickets via Fawny's blog, yay!!!!) I was pretty obsessed with it back in 8th grade when the movie came out... saw it 4 times on the big screen! So it;s bound to be super awesome and interesting. Then going to a braai at Brendan's place. He has sold his house so might be the last one there! However now it's bedtime.... intense week! Hope I manage to sleep late again tomorrow morning!
I know I've said this a few times now, but I am REALLY REALLY glad that I'm hospital free, needle free, cleaners-changing-the-bins-at-midnight free, vital-check free, waiting-for-the-dr free... feels like I've been released from prison!!!!
Tuesday, October 27, 2015
Finally going home this afternoon!!!! This has been my longest hospital stay ever (well exactly as long as I was in hosp for my transplant, so it's a tie!!). Definitely cannot complain, I've just always been very lucky and in other words not used to being admitted. Have had some good food for thought and been reminded to be grateful etc etc, but OVER IT NOW. TIME TO GET MY LIFE BACK!!!
Went for lung function yesterday, and it's back to where it was before I got sick, yay!!! Went back up 8% so FEV1% is a nice 44% again so back to my "stable" figures. FVC (capacity) up to 87% from 77% on admission. O2 sats were 94% yesterday compared to 88% so they are also normal again. Lung function has been stable for over the last year now (there was a dip in May but went up just before our USA trip), so hopefully this bug is killed and I will remain stable.
Lung func 14 Oct:
Lung func 26 Oct:
I will be chilling at home tomorrow, and back at work on Thursday. Cannot wait!!! Thanks so much to everyone for the love and support!!!
Saturday, October 24, 2015
Hosp news: Wednesday four more work colleagues came to pop in during lunchtime and spoiled me with sooooooo much of my favourite snacks. Like A LOT!!!!!
Meant so much to me 😊. They are lovely people!!! Looking forward to being back at work just to see them all again. The roses they sent me have also just grown more and more beautiful as well.
On Thursday my hubby's work Syspro also sent me a stunning bouquet.... My room looks like an amazing garden now.
Have also been doing a crap-load of colouring in...
And Thurs was my lungaversary....
I also got redripped, wasn't too bad and I'm handling it way better than I used to with old lungies. Also mastered the new CADD pump thingy that the hip CFers use these days, so CF street credibility has gone up.
Sis also came and did my nails... (Note how my fingers are barely clubbed anymore just by the way)
Lungs are feeling waaayyyyy better, have stopped sleeping on the O2. Trying to get in as much exercise as possible with squats, lunges and walking. Can't wait to be in the gym again. Also had bone density scan done, and Dr is happy with it, hips are normal and some parts of spine has Osteopenia, but apparently calcium and Vit D enough treatment for now.
This admission has also been a CF flashback of note.... I forgot how much the old lungs used to cough. Listening to 2 other CF ladies nebulize and cough and repeat has been humbling. Even though these lungs have had issues over the last almost 3 yrs, they are still fucking amazing. They don't make mucus, they respond to treatment, when you're sick and there IS mucus, it comes out and stays out. You're not DROWNING! Transplant is scary and hard (well I was lucky as hell but normally it's hard) but if it is a success it is AMAZING. Nothing compares to the shittiness of CF lungs. I would do it all over again in a heartbeat.
Hoping to be discharged on Tues..... Then my live can hopefully carry on likenormal again.
Wednesday, October 21, 2015
Elzemike is my crazy BFF at work. I don't know how she got a job in finance. She is awesome 😁 She scared the normal people at work with these creations and the end result is fantastic.
Carli also got roped in....
Tuesday, October 20, 2015
No new medical news. Definitely have to finish this 2 week course of Maxipime in hosp and chest sounding better. Also steroids lowered from 80mg to 20mg, VERY happy about that one. Halfway there in other words, so really hoping and praying next week this time I will be home. Miss the kitties (and Chris) and my normal routine. I will be complaining way less about normal stuff like traffic in the near future!!!
Had a really good day though. Two work friends came to visit making my morning way more fun with great snacks and entertainment (look out for pics later) and a surprise visit from Carli from Cape Town who was here for work with stunning flowers! Mom was here twice (her university's students are striking, so she is not going into the office this week). She also brought me some colouring in stuff, so I've joined the latest adult colouring in craze :-)
Chrislie and Pierre dropped in quickly and of course Chris, who is much better now. Also had a bonsai tree delivered from Louzanne in Stellenbosch. So special.
Feeling really really loved today, so happy heart makes up for being in hosp. I don't believe everything happens for a reason, bit this is def some good reflection and gratitude time.
Sunday, October 18, 2015
So the nemesis of the old lungs has made an unwelcome visit. This morning the sputum results were out... A seemingly sensitive version of this long time enemy seems to have invaded the lungies. Below is what the bug apparently looks like.
I say it's sensitive is because with the old lungs only one of the boxes on the right had an "S" in it, the rest were RESISTANT, whereas this time it SEEMS tame, being sensitive to almost all antibiotics . The reason I say "seems" is that my old CF doc always said it's a "promiscuous" bug that just loves to colonize and become resistant to antibiotics. So we need to eradicate this sucker asap. I haven't seen my transplant doc yet but will def have to complete the 2 week course of IV Maxipime that I'm on. So def another week and a bit in hosp if all goes well. The only time I've ever been in hosp for 2 weeks (apart from when I was 6) was for transplant.... I always had home IVs. So this is def a new challenge:-(
At least Im feeling better everyday, and it helps that these new lungs don't just produce mucus THE WHOLE TIME, so it feels like an easier battle to fight. Can also feel some pieces of mucus still stuck and so strange to put so much energy into coughing but with so little results!
Trying to do some squats too and went for a walk this afternoon, as I can't just waste away in bed. Also trying to use the opportunity to gain a kilo or 2. Seems like some extra weight will not be a waste with all these recent medical dramas. Bloody hell! Thank goodness they are all happening AFTER our California trip!!!!