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.

35 years!

Happy wedding anniversary to my parents for tomorrow! 35 Years of being married is no small feat! May there be many happy years ahead still! We love you!

Had a fairly boring week. Bio has continued to be a killer for this whole month now and feeling more short of breath. Not fun. Had quick brunch with Andrew on Thursday which was nice, and met up with another friend I used to work with for coffee at her house later that day. Yesterday we saw Cecile, Dean and their cutest little boy Ben! Friendliest baby EVER!

Had supper at my parents' house last night with the sister and Pierre, and today we've done nothing apart from lying on the couch and watching a movie. (I did to a load of laundry and washed the dishes at least). Finished another toy for the soon-to-arrive niece/nephew.... was supposed to be a koala but looks more like a mouse?? In 2 months' time the baby will be here! Nothing else to report on.... have a great week!

2016 - not a year I ever want to repeat

This was my 2016 "resolutions" post... The year WAS different... little did I know that 20 days later would be my last day at work, and 23 days later I would be in ICU with 2 collapsed lungs. Not working has been good for my health in terms of staying stable. Started using O2 at home when I was discharged, and can't cope without it anymore unless I'm sitting absolutely still (and even then heart rate is too high to feel comfortable). Lung function dropped with roughly 8-10% during the year, but it would have been much worse had I not been looking after myself as a full-time job. In many ways I am having deja vu to this time in 2007, but it's also very very different. My ONLY resolution for 2017 is to survive it. Back then I had this quote up on my bedroom wall, and it's ringing true just as much now.

2016 Had some very good and very bad times. Highlights were Ditha's wedding in May, holiday with family over Easter and Anna and Casey's visit. Unfortunately I also lost a few friends (see recent blog posts) and the year was just emotionally rough in general.

Christmas was very nice. Family time is always good. Really really missing beach-summers... where you swim in the sea and tan on the beach (not that I'm allowed to "tan" anymore), Would give anything for a good swim in the sea right now (not with current lungs obviously, would drown!). Had some weird dreams last night where I was on a kayak in the ocean, and running/hiking etc... Only to wake up and realise that none of those things will be happening anytime soon and neither are they physically possible. I know things could be worse (they can ALWAYS be worse) and I've been lucky that my rejection has been as slow as it has, but I'm really tired of dealing with it and the consequences for the last almost 4 years now. But back to Christmas... below are some pics...

I've also been working on some crochet stuff for the new addition to the family that's due at the beginning of April... something different! We're all so excited to meet the little one in 2017, and he/she is already so spoiled.

Looking forward to Jan, lots of stuff happening and keen to get the year started. Have a great end to 2016 xxx

Year almost over and blog's birthday

My blog turned 9 on Monday. Happy birthday blog! It's been a great tool for documenting my post transplant journey and hopefully it will continue for many years to come still.

Had a lung check-up on Monday, which was all good. Lung function stable, weight perfect, bloods fine. No more Drs appointments for the rest of the year.

I finished a blanket I've been working on for MONTHS, very happy with the end result. Started a new one now, a Corner to Corner, with amazing wool that I got for my birthday. After that I will have to start doing some baby stuff for the niece.nephew that will be arriving next year :-)

Love Joburg weather this time of year, it's so lush and green and love the dramatic thunderstorms. Always reminds me of the time in hospital after my transplant as well... the humidity followed by the massive storms.... kept me entertained once I was out of ICU and had massive windows.

Not much else to report on, everything seems to be wrapping up for the year. Having my last bio session tomorrow. Friday is a public holiday, will be spending it with friends, yay!!! Can't wait for Christmas and then this year should feel free to end.

Sunday in Hospital

Got admitted to hospital on Friday after not feeling well for a few days. Been having a low grade fever and bad headaches and feeling a bit more short of breath. So after a 5 month break from hosp I'm back! Can't complain though, 5 months better than the previous 3-month breaks. And I was worried that this might happen close to Christmas and that would have been way worse.

Before this bout of "sickness" we had a great time last weekend in Secunda meeting the cutest little baby boy Ben!!!! He is soooo flipping cute. Had so much fun playing with him.

Workouts have also been going well before this week... got some new inspirational exercise clothing from Mr Price Sport. Hopefully I won't lose too much muscle in hosp now :-( Will need to make sure I try to keep on moving.

At least I also have some more time to work on my current crochet blanket. This one is for Chris (despite the pink in there!). Going to be epic once done.

Not much else to report on, although I think that was quite enough action for one week. Will be in hosp for 2 weeks.

Last day of being 31!

As the title suggests, today is my last day of being 31! I really don't mind birthdays or getting older, and not sad that I'm not in my 20's anymore either! My 30's have been pretty interesting!!!

Been sick since Friday/Saturday, NOT impressed... been working so hard to stay healthy for Anna and Casey's trip and then this happens! My head felt like it was going to explode on Sunday and yesterday! Luckily I got to see my Dr  yesterday afternoon and got some antibiotics and nasal spray for sinus infection. Slept almost 12 hours last night after two nights of sleeping less than 4 hours due to intense headache and sneezing my ass off with the oxygen blowing into my nose NOT helping the situation. So it seems like Ciprobay is working and I'm feeling human again! Just resting now until our visitors arrive! Unfortunately had to cancel ALL my birthday plans :-( But just glad to be feeling better.

Spring is also here in full force. Flowers everywhere! Unfortunately I haven't been able to smell the jasmine for the last few days (it's right under our bedroom window!) but it's looking amazing.

Last week I was lucky enough to see an old PE friend that I haven't seen in AGES! Antoinette was here for work and we managed to get together for supper. Was soooo nice, and she will be coming up for work again, so that's super cool. She once updated this blog many years ago after my transplant when I didn't have internet access yet.

Not much other news, counting the days until our epic holiday starts! Come on 7 Sept you beautiful day! Oh and below is a blanket I'm busy with for Chris (and me). He has said that he doesn't mind the pink bits :-)

Happy birthday to my mom!

In less than an hour's time it's my wonderful mother's birthday! Baie geluk met mamma se verjaarsdag, ons is soooooo lief vir mamma en danksy mamma het ons OK uitgedraai :-) My mom is AMAZING, She has always been there for my sister and I (except when I get a tattoo but even that she forgives eventually). She raised us to be the best people we can possibly be, and I often catch myself saying something and totally hearing my mom's voice coming out of my mouth, but it makes me proud because if I turn out to be half the person she is it means I turn out pretty awesome.

I can't believe it's already a few days into June... time seems to disappear when you're in hospital. Winter is here. (I recently binge-watched Game of Thrones so now this sounds weird to say). Hoping to go home tomorrow, feeling way better than when I came in at least.

Finished another blanket and colouring in pic...

Not much other news, craving to get my hair cut when I get out of here, and be home with my hubby (who has been amazing once again while I've been in hosp) and the kitties (who are going to ignore me for a while). And sleep in my own bed with an electric blanket.

Oh and on a funny note, found THIS in the week and I think it's BRILLIANT!!!!

Very quick little update

So the most exciting news in recent times is that we had someone run the Comrades Marathon for Love Life; Gift Life! He is Justin, the owner of Justin Jeffery Biokineticists the place where I go for my weekly bio sessions. It all came together very quickly but was something really cool, and hopefully just the start of more such big things.

We have also set up our Twitter page now (see side panel on my blog) so please follow us and like on Facebook etc! Need all the support we can get!

I'm currently in hosp for my regular Pseudomonas infection. Two weeks of IV antibiotics. Almost half-way at least. Feeling a lot better than a week ago already.

Can also finally post my latest crochet blanket, that was a wedding gift for Ditha and Riaan. Did a new pattern as you can see! Was lots of fun to do. And today is the last day of May!!! Where has the year gone???? It's good though cos it means Anna and Casey's visit is closer, but wow....

What's been happening

Been rather busy since we've been back from our holiday, nothing wildly exciting though. Had hair cut.... it's been falling out A LOT in the last few weeks... I'm not sure if it's due to meds I received while in hosp in Jan/Feb, or due to something else.... change of season??? Either way, it's annoying as hell. So I had A LOT cut off. It's just below my shoulders now. Hope the hair-loss will stop soon!

Had a dr's appointment on Friday, lunch with Andrew and a friend from work, a transplant sports meeting and a braai with a friend waiting for transplant and her hubby on Sat, some medical tests yesterday, grocery shopping.... so just STUFF.

I did however find the below very cool items that are very definitely ME:

 I also finished another blanket, and I think it looks great!

Had a rather big medication victory, the antibiotics that I need to nebulise with, Colistin,  has been approved by medical aid :-) It's been a LOT of admin to get this approved, as you also need government approval to be able to use it. You also can't just get it from any pharmacy, it has to come from a specific one, Had my first delivery on Friday, and this is what a month's supply looks like: HAPPINESS!!!!!

It's been pretty cold the last 2 days, so kitties are being snuggle bunnies. When they're not busy terrorising each other that is. Was supposed to see the biokineticist today, but feeling TIRED and bleh. So will go again on Tuesday. No other plans for the weekend.

Prize from Rare Diseases SA and other stuff.

I got my prize for coming 3rd in the Rare Diseases SA competition today! Cool hamper!!! Need to paint something awesome with it.... Haven't really painted much before since being an adult, but hoping to be inspired. Also finished colouring the below pic this weekend.... Raphael Sanzo's The Sistene Madonna.

Also finished another girl baby blanket...

On Friday and Sat I was extremely tired, so spent most of the time in my pajamas. The weather was all stormy and rainy which didn't help! On Sunday however it cleared, and I felt more energetic as well. We went to a picnic at Delta Park for my aunt's birthday, and got to use the picnic basket Chris's mom gave us for Christmas! Definitely planning on using it a lot more! Very nice outing with a special freshness thanks to the rain.

Today I saw the biokeneticist (ass going to be stiff tomorrow I think) and had an exciting meeting with a friend and fellow lung patient... watch this space! Tomorrow I'm going away for a night with Fawn and the oxygen machine.... a little mid-week adventure! And the coming weekend is a long-weekend, yay... and after that Easter! Lots of excitement for the rest of March.