Medical Update

I survived Friday's lung function test and check-up! Lung Func not up yet... but not down either. So it's the same as last (just below 70%). According to Dr this is good news and I'm tolerating the photopheresis well so I should be happy. Will be going back to gym again on Wednesday (have visitors at the moment) so looking forward to that. Had a follow-up visit with psychiatrist today that went very well too. Next photopheresis will be 3 and 4 Sept. So as you can see my health really feels like a full-time job at the moment!

My American Twin!

Just realised I haven't blogged about Anna yet! Check out her blog here (I've also added it to my blog-roll). We started communicating via Facebook a few months before the Games, she received her lungs 22 Nov 2010 and also has CF. Was great to meet her in person!! I think we look like siblings! She also brought me some Starbucks coffee from the US and beach sand from California where she's from. Hoping to see her in the flesh in Argentina again in 2015!

Tomorrow is 5 years 7 months with the tantrum-throwing/ diva-like (at the moment) breathers! Hoping the photopheresis will discipline them back to proper lung function!! Oh, and I haven't mentioned that we're going to Swaziland this weekend! (It's a different country surrounded by South Africa) At least then I get to have one stamp in my passport this year!!

Photopheresis # 3 and 4 done

Yay for surviving another 2 sessions of ECP! Went better then last time in terms of stress and the femoral line in groin went in easier. So that's good. At least I get 2 weeks off now... next treatment's scheduled for 3 and 4 Sept.

Hoping work goes well tomorrow... and trying to keep calm about Friday.

week = survived!

The rest of the week was fine, work wasn't too busy and I didn't feel too tired the day after the ECP, so that's good to know. On Thursday evening Chris and I went to the movies which was a nice mid-week treat! Last night we had supper with some friends in Parkhurst which was great. This afternoon we're meeting other friends at a German pub to watch rugby and have supper, and tomorrow I'm having some special people over for an early birthday lunch!

So very nice and busy weekend, just what I need before Monday and Tuesday's treatment! After this week the photopheresis will be every second week for another 4 clusters of 2 days each. At some point, depending on the results of lung function tests, we will probably apply for more treatments. Needless to say, I'm so nervous for Friday's lung function I could die!

Second treatment down... 10 to go... for now.

Yay suvived second treatment. Spent last night at home with the femoral line in, was a bit uncomfortable but worth not having to get another one today or spending a night in hospital! So far I've noticed that side effects I have when blood starts going into machine and cells get harvested is that I get cold shivers, feel tired and have tingling feeling around the mouth. Luckily it stops when procedure stops. Apparently (according to Facebook friends) I will feel tired tomorrow but so far I feel fine. Just happy to be home and going to work tomorrow and don't have any lines going into any arteries in my groin tonight!

Will be doing lung function again on 23rd of Aug... feeling apprehensive!

First ECP treatment underway

In hosp now having first photo treatment. It took them about 3 hours to harvest the cells, now they're treating it with UV light for about 2hrs while I wait, and then the damaged cells will be put back into my body. Only side effect so far is tiredness and it wasn't fun having the femoral line inserted into my groin. The line will stay in overnight (although I will be going home) and then tomorrow the whole process will be repeated. So far so good I guess.

Woman's Day article!

Today is woman's day here in SA, just saw an article about me that was in a magazine in Feb was featured on their website today! Appoplies if you don't understand Afrikaans!

http://www.sarie.com/lewe-liefdes/eie-stories/vrouemaand-inspirasie-alice-vogt

Photopheresis approved!!!!

Yay after almost 4 weeks my photopheresis treatment has been approved (for 12 sessions) by Discovery. SO RELIEVED! Starting on Monday! So it will be Monday and Tuesday next week. Just glad to get it started. YAY!!!!!!!!!!!! Never been this excited about anything involving needles :-/ If you missed the previous post regarding photopheresis click here.

Yesterday was also our 3 YEAR WEDDING ANNIVERSARY! Wasn't a great day, with both of us still sick and me working late. But we did go out for steak which was yummy. At least this is a long-weekend (tomorrow is Womens Day) so will have 3 days to relax and kill this cold off completely.

Flowers below are the ones I received when I got my gold medal last week and the other ones are from Chris for anniversary.

Pics of Gala Dinner and donor memorial ceremony where I spoke

Here are some more pics of the Games, and I'm in the music video for the official song! See the video on You Tube here. (footage from Sweden)

 

Race Walk - Gold medal!

Despite picking up a cold in the last few days I managed to beat my personal best time and get a gold medal for the 3km  race walk!Very happy about that! All age groups walked together but got awarded medals seperately. See pics below!

More WTG pics