Sunday, March 30, 2014

Cape Town weekend

The weekend was a very nice break! Landed at about 21h00 on Friday night, went to our hotel and just slept after catching up a bit. Yesterday our meeting started at 9am and ended at abt 15h00, and then I managed to see Louzanne who drove from Stellenbosch for a drink and much needed catch-up! We had supper (awesome fish curry) at the Waterfront and again just passed out as soon as we got back to hotel! This morning we left the hotel at 10h00 for the airport again. It has also been confirmed that the National Transplant Games will take part from 9-11 Oct in Stellenbosch! Not sure what my health is going to do and if I'll take part but will take it a month at a time.

Tomorrow is 4rd last session on photo and then the rest of the week will be MONTH END at work and CRAZY.

Thursday, March 27, 2014

Below 60... eeekkkk

So yesterday's check-up went great in terms of bloods and blood pressure and O2 sats and weight (gained 2kg, yay) etc.... but not so much the lung function. FEV1% is now 58%.... was hoping it wouldn't drop below 60% but it did. So the trend of a 2% drop per month continues... I have 3 sessions of photopheresis left (last one on 24 April)... after which  would have had 24 sessions. For now I won't be continuing with that, as 24 sessions are the standard and doing more than that probably wouldn't be of much benefit. So the plan is to continue testing my lung function every month and basically take it as it comes in terms of other treatment options.

I must say I'm surprisingly OK with it all. Glad to be finishing the photo in terms of my veins and sick leave (or lack thereof!!!) and the logistics of going to Pretoria every 2 weeks. Will miss the staff there though. Also so excited about our holiday coming closer (9 working days left!!!) that nothing can really upset me right now. My action plan is as follows:

  • carry on eating enough and keeping weight on
  • gym as much as possible and staying fit (weight training going well, cardio not so much...)
  • RELAX AND ENJOY our holiday
  • be ready for what the lungs may decide to do next... continue declining slowly or stabilizing properly??? And do what needs to be done.
This weekend I'm going to Cape Town as mentioned in last post and then Monday photophresis. Have a good weekend!

Sunday, March 23, 2014

Long week ahead!

Having Sunday eve blues thinking about the week ahead, especially lung function on Wednesday. Can't afford to have it be down more!!! Also have a mild cold which keeps coming back, but hoping it's gone for good now. Ugh just wish it's Wednesday already, the waiting sucks.

This weekend I will be flying down to Cape Town for a SATSA meeting, so that's something to look forward to at least. The past long weekend was also nice, just relaxed, watched some movies, did some gardening and shopping. Also went to gym on Thurs afternoon and today.

Will report back on Wednesday's results.... wish me luck!

Friday, March 14, 2014

Another week closer to holiday....

Not much to report on.... only good thing about the week is that work was OK and in total I've been to gym 4 times since Sat. So that's good!

Saw psychiatrist on Monday, he is happy that anxiety is under control and don't have to see him again for 6 months. Had photo #21 on Wednesday, and it didn't involve any unnecessary needle pricks which is always a plus. I only have 3 more treatments left for this session of 12... so my Dr needs to decide how treatment will commence from here, which is a bit scary. Going for lung function again on 26th which will obviously influence their decision too!

Woke up with sore throat this morning but at least it's weekend now so hopefully by Monday it's all gone. No other plans yet for the weekend, just some things that I want to get done before the holiday and hopefully it stops raining!!! (It's been wet and miserable for more than 2 weeks now!!)

Sunday, March 9, 2014

Fawn's 1st lungaversary

Just 2 pics from last nights celebration, only attended first part of the evening (being all old and married hahaha) but was great fun and impressive venue... Sandton Sun hotel... almost like Vegas vibes! May you have many more Fawny!!!!

Saturday, March 8, 2014

Month end over and award

Worst week of the month at work is over, yay!!! Thank goodness... soooo tired now! Luckily I slept in this morning so that helped. Went to gym this morning for the first time in 5 weeks or so... was hell!!! But I least it's a start. Will go again tomorrow as I didn't do much today so hopefully by end of week I will have started to gain some fitness again.

So exciting news.... my blog got named as one of the top 35 CF blogs!!! Check it out here... so exciting!

Tonight it's my good friend Fawny's 1 year lungaversary party! Going to fun, and had hair coloured and treated today so going to be nice to dress up and go out! Below pics are of my PC at work... starting to get so excited about our holiday that I changed my wallpaper to the view at Storms River :-) One month and 4 days to go!!!! Also some pics of me and my 2 male kitties that sis took. They are my children!!

Saturday, March 1, 2014


It's March!!! Pretty much Autumn.... Which means our Amazing April holiday is coming closer... yay! (We leave here on the 12th of April for 10 days at Storms River Mouth - my happy place - a few days back in JHB and then 5 nights at Mapungubwe with my fam...altogether 3 weeks off!!!)

This week was fine, check-up was OK, all bloods perfect and everything looks and sounds great, lung function down a tiny bit again, FEV1% now sitting at 60%. FVC (capacity) at 96%. Diffusion was up a bit (can't remember the %).

Photopheresis went fine, but if I am to continue with this indefinitely then they might need to start making a plan in terms of accessing my veins. Not sure how long big vein in arm will last and they cannot use groin indefinitely. So will see what happens....

Last night we went to see a stand-up comedian Trevor Noah at Montecasino, and tonight we will be going to Gold Reef City to see Nik Rabinowitz, also a VERY funny guy! So it's pretty much comedy weekend! I was also supposed to go back to gym today after being off for quite a while, but after doing grocery shopping in some heavy rain I have been soooo lazy! So tomorrow I HAVE to go...

Next week is month-end again :-(... which means working longer hours than usual and no time for gym usually. Louzanne (one of best friends from school who lives in Stellenbosch) will also be sleeping over by us on Monday eve, YAY!!! so that will def make the week a lot better!