Monday, May 25, 2015

Happy birthday Louz!!!!

Happy birthday to one of my besties Louzanne!!!!! Wish I could be in Stellenbosch today to celebrate!!! She is also newly engaged so very excited for the wedding!!! Hoop jou jaar is fantasties en jy verdien alle geluk wat jou kant toe kom xxx Love jou!!!!


Had a great relaxing weekend. Did domestic stuffs, slept late, did a little bit of shopping, and went out for Indian food on Sat eve with Chrislie and Pierre. It was AMAZING, the best Indian food I've ever tasted in my life. The place is called Ghazal in Sunninghill. I would definitely recommend it! Ate so much I couldn't breathe, had to lie down when we got home, but WORTH IT.





One of my fellow bloggers, and the best one I know at that, Piper, posted this post yesterday... If you want an interesting read on re-transplantation go read it!!!

ALSO, they broke into our house last night and stole Chris's laptop, but that's a story for a different post!

Thursday, May 21, 2015

88 monthses!

Tomorrow it's been 88 months of togetherness for me and the new lungs. Thank you lungies for being awesome and I'm sorry my immune system is an asshole :-(


Have survived first week back (so far) after being sick. Lungs feeling good, just feel like I am so tired still and need like a month of sleep! Hopefully after this weekend that will be better. Next week I will brave the gym again and slowly start getting "fit" again.

Saw the ENT for another sinus check-up yesterday. Feeling sooooo frustrated because after a sinus x-ray, sinus CT, nasal swab that showed infection, and 3 ENT visits it turns out I just need take pain meds, carry on using the nasal spray and sinus rinse and hope for the best. Sinus issues are a part of having CF, but it's never really bothered me like it has recently. I don't take pain meds for "bearable" pain, as I feel my poor kidneys have enough to deal with, so I try to stick to "necessary" meds (ie pic below). I'm just venting though, so please don't give me more sinus advise :-p

By the way, see here for an exciting new drug treating MY mutation of CF! (too late for me as old lungs are long gone, but it's awesome!). I have Facebook CF friends who were part of the trials and they are all very positive about it.


Tomorrow also marks 7 weeks to go to our trip!!!! We have collected out Visa's this week so that's all sorted. Excitement!!!!

Sunday, May 17, 2015

5 years in our house !

This weekend 5 years ago we moved into our house! It was the most amazing feeling ever! (Even though I didn't actually live there before our wedding in Aug). Looking back at the pics of how empty it was and how bad the garden looked, we've come a long way and it really feels like HOME now. I would be very reluctant to move away from here! (The two flowers below are blooming in my garden at the moment.... I planted them years ago but they died... However since we cut our big tree in half last year a lot of previously "dead" plants have made a come-back!)



Feeling LOTS better than last weekend, can go upstairs at home again without feeling like I need to catch my breath, so that's good. If things can just stay the way they are now for the next 2 months that will be GREAT. Also feeling a lot more energised (although come Monday at work I will realise not fully back to normal yet!) Also back to my normal Prednisone dose from today, thank goodness. Horrible drug. Antibiotics will continue until next Sunday.

Went to a lovely kitchen tea yesterday afternoon for a friend getting married in 2 weeks' time. Was very nice with AMAZING eats. Can't wait for the wedding. Parents coming over for lunch today, so I need to start deciding what we're going to eat! Wish me luck for being back at work this week... first day back always feels so hard!


Thursday, May 14, 2015

Beatiful Coastal Drives... Less than 2 months to go... eeekkkkkkk

Anna posted this on my Facebook timeline yesterday. So firstly, OBVIOUSLY, it's awesome that SA is nr 1!!!!!!!!! Yay for our stunning stunning country, privileged to have seen so much of it.

But what is more amazing is the below:

USA: All of which makes the country pretty much perfect for road-tripping, which one can choose to do on not one, not two, but three of the twelve most beautiful coastal drives in the world - Oregon, Hana and Big Sur.


SA: In fact the country has three of the world’s ten most beautiful coastal drives including Clarens Drive and Chapman’s Peak. These were number one and number two most beautiful coastal drives respectively.





This means that Anna, Casey, Chris and I would have done 2 of the world's most beautiful drives together!!! Big Sur and Chapman's Peak :-) We will be Doing that little trip from 13-16 July so 2 month to go!!!

ALSO, we heard yesterday our US visa's have been approved :-) Exciting times.

Lungs are better, The Prednisone has just made my VERY VERY moody yesterday, turning me into a first class bitch! And that's only 30mg... I used to be on 40mg a day pre-transplant. Body not used to this anymore! Most bittersweet drug EVER. Finishing it on Sat, and the antibiotics will be done a week after Monday.

Tuesday, May 12, 2015

infection relief

So I've been complaining about shortness of breath in my last few blog posts when walking or climbing stairs (more than I'm used to or expect with 40%-ish lung function). So yesterday morning when I was out of breath after just walking from my car to desk at work, and after feeling sooooo tired lately I decided to go to the Dr, even though he can't treat my chronic rejection any more than it's already being treated and even though I was there just over 2 weeks ago.

Had bloods done, x-ray, lung function (wasn't down by as much as I expected given how crap I felt) was 38% FEV1%, 6 min walk test (O2 sats were about 94% when I started with a heart-rate of 133, which is high, even for me! After 6 mins of relatively fast walking it was 83% and HR 159). Still felt like it should have been worse judging by how I felt.

Then the bloods showed elevated white cell count and CRP (ie infection) and I felt sssoooo relieved! Even more relived when I had a temp of 38.7 degrees C and Dr said my chest sounds crap even though I'm not coughing at all! It means it's actually something that can be TREATED and not just my lungs suddenly deciding to decline way faster just before our US trip just to piss me off! Must have picked up something at work (where SO MANY people have been sick and it sounds like a hospital waiting room with all the sneezing and coughing), but who cares right? Corporate Culture dictates that you go to work, not matter how sick. Chris has also been sick (thanks to someone at HIS work who sits across from him and came in on Thursday VERY sick). THIS is why some post transplant patients DON'T work at all, but I wanted a normal life which comes with this risk so it's just something I have to deal with.

Luckily I wasn't admitted (not that I would have minded too much, sometimes you just want to feel better) but sent home with oral antibiotics for 2 weeks, Slow-K (guessing potassium was low), 30mg of Prednisone for 5 days and 2 inhalers. Also been booked off for the rest of the week with strict instructions to REST. This is NOT a problem as I really feel I need the rest.

Hopefully by the weekend I'll feel like a brand new person and can carry on looking forward to our American Dream holiday.


Sunday, May 10, 2015

Happy Mother's Day, 2 months and lungs

Been an EXTREMELY fast weekend, it's INSANE that it is over already :-( I didn't even get to sleep late properly :-(. uuuggghhhhh

Mother's Day lunch was great though (apart from Chris missing it due to being sick). My sis made yummy food and it was just great discussing all our travels (parentals are also going overseas soon!). Poor Chris caught a bad cold/flu at work and has been suffering for last 3 days now. I cannot believe I haven't gotten sick between him and all the sick people at work!!! Bloody immune system is too strong :-(



Fed a friend of mine's two doggies for the weekend, two awesome black spaniels! Took them for a short walk with my sis. Made me COMPLETELY out of breath... meh. She took over and took them for a short run while I waited for them. It's really felt like I am struggling more to breathe with exercise these last few days... making me stress!!!!! Today in exactly 2 months time we leave for San Fran. Lungs need to stick it out till then! Seriously!!! We've waited long for this so BEHAVE!!! You also know winter is here when they start burning the grass in Joburg..... which was the case at Albert's Farm where we walked the dogs. You can see the smoke on my pic below (edited using my new iPhone!). The buildings in the background is Rosebank.


My car is going in to be fixed this week after my bumper-bashing a few weeks ago, Wednesday is VISA day (take two), and hoping Chris get better! Also might try to see dermatologist again as one of the little warts he burnt off a while ago seems to be growing bask. Annoying!!!! Anyways... hopefully a productive week!!!



Saturday, May 9, 2015

Early Mother's Day post!

Wanted to share the pics in an early Mother's Day post!  Love them! We are having lunch at my sister's house tomorrow, looking forward to it. My mom was 26 when she had me, and 29 when she had my sis. Crazy to think that when she was my age, she had to cope with a 2-year old and a 5-year old with a chronic disease (and bad prognosis at the time). She is probably the strongest woman I know, and the best role-model a girl can have. Growing up she was the perfect mix if caring and scary, and I guess that's what you need to be when raising a rebel-ish child with CF! And not to mention absolutely BEAUTIFUL, hopefully I have inherited her awesome-ageing genes as well!

Baie lief vir mamma!!!!!








Thursday, May 7, 2015

2 months and 3 days to take-off! (and lung prep-talk)

That's how long before we depart for the US of A! STAY STRONG FOR THIS ONE LUNGIES!!! Once we get back you can do whatever the hell you want :-p So I've mentioned the we are going to Big Sur as soon as we arrive in California, and I can now add that we are going to Murphys (where Anna's folks have a house) for the last 4 days of our trip! In between these 2 trips there will be San Fransisco, rollercoasters, probably Yosemite National Park, Santa Cruz.... eeeekkkkkkk.

All the motivation needed for the next 8 weeks..... I just need to keep focusing on this. #StayStrong lungs, you can do this. Won't ask anything from you again after this!



Tuesday, May 5, 2015

05.05

Not much happening in Wonderland, had another nice long-weekend. Friday I had lunch with a friend and did some shopping for US trip. Ended the public holiday with a braai at Brendan's place. Had supper at my parents' place on Saturday after spending the day chilling around the house. Had some amazing macarons that Chrislie and Pierre brought back from their Paris trip. YUM.

We stuffed up our VISA appointment last week.... had it written down and saved on phone as being at 10am on the 29th. However when we got there we realised our appointment was the previous day! No idea how we both could have gotten it wrong, but we were a day late. We were able to reschedule for the 13th. Hopefully this time we get it right.

Feeling a bit crap today, SUPER tired. Will be going to bed early and hopefully feel better tomorrow. The way I'm feeling now the CF walk is definitely not happening on Sat.


Tuesday, April 28, 2015

CF Walk and fun weekend

Firstly, on Sat the 9th of May there is a CF Walk at the Pretoria Botanical Gardens. It's always been held in remembrance of my fellow transplantee Francois Kruger. I haven't been able to attend the walk before though, but will definitely be there this year. Please come along for a very good cause! Hopefully I manage to do the whole 5km! No way I'm only doing 1km.



The long-weekend was nice. On Sunday I went to gym (it sucked), and in the afternoon we went to the movies with some friends, Was fun, Yesterday we checked out Blackhorse Brewery in Magalies, which I've wanted to go to for ages. Was not disappointed, So much fun! Had amazing Ginger Berry Beer. AMAZING. Will definitely be going there again.

Enjoy the 3-day working week!





Saturday, April 25, 2015

Lower Lung function & Louzanne

Had a pretty good and productive check-up on Wednesday, weight up a kilo (+-56.5kg), bloods were all great. Got Augmentin as my sinuses cultured Staphylococcus Aureus, and also our flu-shot. O2 sats were 92%, and FEV1% was 40%.... it's 4% lower than 6 weeks ago, albeit not on the same lung function machine. Will go again in 6 weeks time and then after 2 months when we get back from America.

So some exciting US news, Anna has booked accommodation for us for 3 nights in Big Sur which will coincide with her birthday! The pics I've seen look AMAZING, it almost looks like Storms River which is our favourite place in the whole of SA. Wednesday is VISA day!!!

The short visit with Louzanne was amazing, I picked her up after work yesterday at the Gautrain station, after which we went to pick up my new glasses (had eyes tested, they're exactly the same as 2 years ago, yay!) and went for some tea and scones. This morning we went shopping at Sandton City (although I'm trying to be VERY good with my spending and trying to save for spending money in the US!) and yummy breakfast with Chris.

It's a long-weekend, which is AWESOME. Could really use that day off on Monday! Followed by a 3-day working week). Don't have much planned for tomorrow, but on Monday we'll be going to the Blackhorse Brewery with friends. Have been wanting to go there for a while.

Have a good long-weekend (if you're in SA). Some pics below of my new glasses and this morning.





Tuesday, April 21, 2015

87 monthses!

Tomorrow is my 7 year 3 months lungaversary! Yay!!! Every month is such a gift!!!!

Yesterday I saw the ENT for a follow-up on my sinus issues. Apparently I have a hole in my septum, which is weird, but doesn't affect anything but it's just strange. Also, some of my sinuses are under-developed which is apparently common in CF patients. He could see infection in the areas under and between my eyes. Which is where the pain has been. So he did a nasal swab to see which germs show up and then together with lung Dr they will decide which antibiotic to give me. He said he could surgically drain the mucus but due to the nature of CF and the thick mucus it will just happen again, so it's like a last resort.

Went to gym again today, was crappy again, meh. Doing lung function on Thurs so will see what it says. On Friday Louzanne (if you don't know who Louzanne is by now then I cannot help you...) will be sleeping over and we'll get to spend some quality time together on Sat!

Will post an update on the lung function! Wish me luck!