Tuesday, April 30, 2013

Article in Sunday Times 28.04.2013

Weekend in Cape Town

So apart from brining a cold back with us from Cape Town, the weekend was very nice. We went out for supper with the family when we arrived, which was DELICIOUS, and on Sat the whole day was WEDDING DAY. The ceremony was at 10am, followed by tea and snacks, and a lunch in the afternoon. All the food was great, the weather was awesome and the atmosphere fantastic. What a nice couple! We also managed to meet up with Louzanne (friend who I went to visit in London last year and who is now studying in Stellenbosch) which was great.
Unfortunately the weather changed on Sunday and we couldn't go up Table Mountain as planned :-( We still had a good day though, visiting a market in Hout Bay and going for a nice lunch. So all in all very nice little break. Unfortunately we picked up a bug somewhere along the line and now we've both got a bad cold :-( :-( So work was tough the last 2 days but luckily tomorrow is a public holiday so we get to rest!!

Thursday, April 25, 2013

Off to Cape Town tomorrow...

Not much has happened since the last post, apart from lungies having another birthday on Monday! Went to gym on Monday, spining Tuesday and a 3km run on the road today. Did some shopping with my mom on Saturday and I'm pretty much sorted for winter!

Tomorrow we're flying to Cape Town for Chris' cousin's wedding. So excited, haven't been down there in ages! Will be great to see that side of the family again. Will take pics :-)

Friday, April 19, 2013

Making progress! 100 Days!

The past week has been good fitness-wise. On Sunday did another 10km zoo trot with my mom. Was very tired as we were out late on Sat night because it was our last oppotrunity to hang out with Malcolm and Chantelle before they went back to Australia on Sunday. So didn't go too great, took 85 mins, but I wasn't stiff the next day and although it was hard while doing it, it didn't affect te rest of my day energy-wise. On Monday I went for a 2.5km run on the road as well, Wednesday gym, Thursday spinning and today gym again. And at the gym I could jog for 10 mins without any walking which I havent done since Oct last year. Also first spinning session since then, so that's good.

Tomorrow my mom and I are going shopping, will visit Fawn (my friend who got lungs early March and is having some complications) and then drinks for a friend's 30th birthday. So should be great weekend :-)

Thursday, April 11, 2013

Wednesday, April 10, 2013

Holiday? What holiday?

STRESSED!!!!!!! Wow any holiday health-benefits have been undone. Work has been pretty darn busy, especially today, 11 hours at work and only break was spent on the telephone. Luckily we're getting pizza tonight so not going to cook. And having a drink as I type. Work has not been the main source of my stress thought, it is PHARMACIES and SCRIPTS!

Let me start at the beginning.... since transplant I've used a chronic meds pharmacy who deliveres my meds to my work monthly. This has always been working well until a few months ago when they changed their name and premesis and probably management and their staff was suddenly highly uneducated. Can you say FRUSTRATION??? So I've been biting my lip and calling them a LOT to make sure I get all my meds thinking I'll change pharmacy when we're back from holiday as it will be too hard to organise while being away. So I asked them to deliver ALL my meds on the 2nd of April, after which the plan was to change... So knowing who I'm dealing with I call them on 25 March while on holiday to conform delivery for the 2nd. They then say they were going to deliver the next day (Without comfirming what I need or what the co-payment is or anything they normally do!?!?!) but will move it to 2 April. Come the 2nd of April.... no delivery (as I expected to be honest). So I call them, and they say they have no delivery loaded for me and that "Maybe this month I should use my "local" pharmacy and/or make other plans as they have a backlog and can't help me". After losing it and asking the person at the other end of the line if they know what the word CHRONIC means and telling them to  cancel ALL deliveries INDEFINITELY because I don't have a LOCAL PHARMACY but their service is PATHETIC, I was left on my own trying to work out what I'm going to do... So knowing I was going to see my Dr on Thursday the 4th, I thought I'll get a brand new script for EVERYTHING and use my medical aid's Delivery Services and start fresh. However I wasn't going to make it to the Monday in terms of how much meds I had left and went to the hospital pharmacy to get a week's supply 2 of my anti rejection meds. They were SUCH a rip-off and I ended up not getting everything I needed as the co-payments were just riduculous. Luckily some friends came to the rescue and I'm sorted til this weekend. Also had all the meds (except the 2 that I claimed for at the hosp pharmacy) delivered by the new supplier on Tuesday and that went well at least. So now I'm just trying to secure the delivery for Friday of the 2 anti-rejections meds and I'm sorted (touch wood!). What a hassle!!!! If I don't get it by Friday I'll have to go to the dreaded hospital pharmacy and pay cash for another few days meds. But being positive that all will be fine. And bear in mind all this is on top of dosages of Certican changing every 2-3 weeks and have had to have some of that flown into PE when I was on holiday. And I KNOW it will increase again and all of this will probably be repeated. Let's hope with the new pharmacy everything will be better. RANT OVER.

Doing another 10km race with my mom this Sunday, and gym has been going well. Planning on joining a proper squash club too so preperations for WTG are going well. Hopefully this week is downhill from here!

Saturday, April 6, 2013

Article in the Mail & Guardian that I did a telephonic interview for


First week back = survived!

This week might have only been 4 days long workwise but it was pretty crazy! Month-end at work, Dr appointment and sorting out medication admin!!! My Dr changed my anti rejection meds 2 months ago (drastically reduced the Prograf and added Certican) and since then he has been increasing the dose every 3 weeks or so because my levels keep being too low. So the admin surrounding getting these increases approved from medical aid and getting hold of the meds (even while being on holiday and having to organise to have it flown in from Cape Town!!) has been quite hectic. At least I also managed to sort out an old medical aid query from Oct last year (!!!) and will get some money back this coming week, yay!

Dr appointment went well I guess. Bloods were all normal (apart from the Certican level being too low still) and lung function was the same (FEV1% hovering around 85%). X-ray and everything else were also fine. Disappointed that lung function (FEV1%) has dropped from pretty much 100% to 85% for NO reason and that it's not really going back up and we have no explanation for it but I just have to focus on the fact that:

  • Volume (FVC) never really changed much and is sitting at 106%
  • I don't feel a difference
  • I am FIT and going to get even fitter before the World Games in July
  • I know I don't have an infection or rejection according to the biopsy in Jan so the drop is not related to that.
The only thing that happened between the 100% and 85% was the Nissen surgery I had to fix my reflux but that wouldn't explain a drop even though I can't help thinking it has to be a factor! Have to go back in 2 months time and til then I'll keep on working on my fitness!!! Need to get me some medals at the WTG again!!

Went for an eye test this morning (first one in 4 years... oops!!!) and got to pick a new frame. So excited cos it's so pretty, can't wait to get my new glasses!!! Last night we had an AWESOME time with friends... the couple whose wedding we went to a week ago spent a night in Joburg en route to Mauritous and it was so much fun to chill with them and catch up and have some drinks etc! Only got home at 1 am this morning, feeling a bit fragile today but so worth it!

Tomorrow we're going to have lunch with my parents and coffee in the afternoon with Shaun and Alet (Shaun is also one of my tx-buddies). Might also go to gym if the stiffness from yesterday's gym has worn off! Hopefully the weekend has sufficiently charged my batteries for the week ahead!!

Monday, April 1, 2013

Holiday Over :-(

Sadly the holiday is over :-( As you can see from the pics it was AMAZING. We had good weather and I really feel a lot more relaxed than when we left. Storms River Mouth really is my favourite place on earth. I NEED to go there once a year at least. Truly my "happy place" where I can re-charge. Was also great spending time with my sister and her hubby, wish they lived closer! The wedding we went to on Sat eve was great! So awesome seeing great friends tie the knot!

Hoping work goes well tomorrow, first day back never nice!!! And Thursday it's Dr's appointment... eeekkkk! So nervous for the lung function. All the hikes we did at Storms went fine and was easier than last time I was there but it could just be my fitness that has increased. So holding my breath till then! 

Storms River Mouth Pics