Tuesday, October 6, 2015

Meet the Bellas - Calendar Girls with for a Cause

So a bunch of local CF girls have decided to do a calendar! After months of decision making, discussions and a photo-shoot I'm happy with the final product and very excited!! It is being printed at the moment, but orders are ready to be placed!! They are R100.00 each. If you want to place an order with me then let me know.

In some exciting news, Siobhan (one of the Bella's above) received lungs almost a week ago. We are all hoping things go well. Yay for girl power, hoping we raise some much needed funds for the CF Trust!

Saturday, October 3, 2015

Horrible week. RIP Craig

This week Craig Truyens passed away. Just over 2 months after his double lung transplant, all of which were spend in ICU. I received the news when we were in the US, on 21 July. Craig send me a message saying "I know you're probably sleeping over there, but on my way to Milpark, getting new lungs!!!" When I woke up I was soooo thrilled. Even more thirilled than I normally am for patients receiving lungs, because this was special. Criag lost one of his sisters, Dominique, in 2012 due to CF. She was waiting for lungs. Dominique also has a twin sister Caleigh (also with CF obviously). Everyone in the CF community knew the 3 Truyens kids.

Dom's death in 2012 left everyone utterly sad, and with a feeling that Craig just HAS to get lungs. If there is any justice in this world Craig will have a successful transplant. But as I have learnt in the last 8 years, there is no justice in this world. It is absolutely unfair and people who deserve to have a successful transplant more often than not don't have one. My heart bleeds for their family, and especially Caleigh. How do you carry on after losing both your twin sister and brother to the same disease that you have. Not to even mention his poor poor parents and other brother Jonathan.

My week also wasn't fantastic (but nothing compared to the above). Dr's appointment for lung check-up got cancelled twice, then started feeling sick. slight fever, sore body, headache, dizzyness, upset stomach.... manged to see Dr yesterday afternoon. Seems like I have slight infection from my gynae surgery almost 3 weeks ago. I'm really feeling like it's not healing at all, even though I should expect slower healing due to being on immune suppressants.

On the positive side, lung function was exactly the same as 2 months ago, if not slightly better. FEV1% still 44%, and FVC (volume) was up from about 2.78 to 3 litres, which is quite random. Didn't see what the percentage was. So I got some antibiotics (Even though I got given 2 types of antibiotics after the surgery) so hopefully it will help.

Hoping this weekend will be good for the soul and relaxing.

Monday, September 28, 2015

Upcoming Events

This Friday is the CF Barnyard Fundraiser, There are still seats left! Always a super fun event, please join us. It's the first year that it will be on a Friday so that's exciting.

Next weekend is the ODF Fun Walk at the zoo. Also going to be a awesomely fun event.

Both of these causes are very dear to me, so hoping they will both be a success!

Sunday, September 27, 2015

Happy Birthday Chris

Yesterday my hubby turned 32. Happy birthday Chris!!!! Hope I don't kill you in the year ahead :-p

We had a very productive day yesterday, firstly, Chris suggested we go play squash...... Bear in mind I haven't played since the WTG 2013, which was 2 years 2 months and at least 25% more lung function that I have now ago. We didn't play for long, I had to rest like every 2 minutes, and I wasn't even running, just hitting the ball. Insanely tiring!!!!!! Had a blister instantly but I had fun and hitting the ball again was great. Especially seeing that you can still get some of the tough shots. I might change my gym membership so that I move to this gym with the squash courts (they had an open day yesterday) so that we can do this again.

We spend a lot of time cleaning the house (not my idea.... I would never make him clean on his birthday), and going to Northcliff Eco Park (Aasvoelkop) and having a McFlurry, enjoying the views of the city, Also haven't been there in a while so was really nice. I love Jozi and you can just see spring everywhere.

Other news... I had my hair cut and coloured on Friday which is always nice. It's a nice red and lighter at the bottom (ombre). The lighter colour will come out more once I wash it, but really liking it. Medically.... gynae and lung doc has decided no hysterectomy for now.... I'll have a pap smear done again in 6 months' time and we take it from there. Going for lung check-up on Tuesday (having bloods done for that this morning) so then we'll prob discuss it further.

Tuesday, September 22, 2015

Sunday, September 20, 2015

Low Grade Lesions and electricity failures

My gynae informed me on Thursday that biopsy showed only "low grade lesions" and that this was "good news". She is going to talk to lung dr about hysterectomy. That's all I know and guessing it's all I will know for a while... if she were to do a hysterectomy she would have to wait another 5 weeks from now for at least me to heal from Monday's surgery in any case. So I'll just have to try and be patient and wait :-( Not my strongest point.

At least I was cheered up arriving back at work on Wednesday morning with the below card and picture to colour in from my favourite work-person. I've been working on the pic and it's been keeping work-stress down :-p

Week was crazy busy. On Wednesday eve we had the Gauteng Transplant Sport AGM at Milpark Hosp. Meeting couldn't go ahead as we didn't have a quorum present. So that has been moved to this week Tuesday, On Thursday eve it was the lung and heart support group meeting also at Milpark. Was great to see Fawn, Shaun, Alet, Rida and Craig for some catching up. Got to bed late on both occasions, so combined with Monday's anesthesia did not make for a delightful Alice by the end of the week.

Then on Friday our electricity at home went off due to a fire breaking out at the substation. So Friday night was spent in the dark, By yesterday the power still wasn't back, and it only came back on this morning. We slept by my sister and Pierre last night because it's just easier, and took all our frozen foods over to their freezer and all the electronics to charge. Such an inconvenience but also made me grateful again NOT to be on oxygen. Right now it's just an inconvenience, it's not life-altering.

Yesterday I went to a very special baby-shower. Shaun is one of my CF post-transplant friends. He got his lungs in 2011 and has also done really well since then. Him and his stunning wife Alet are expecting twin girls!!! They will be the first "transplant" babies, and I'm sooooo happy for them. The shower was very special and hopefully she had fun. Hoping all goes well for the rest of her pregnancy and that the babies arrive safely when the time is right!

Oh, I also sold my wedding dress!!! Very happy about the extra cash and LOTS of extra cupboard space. Went shopping with my sis yesterday and got shoes and underwear for Louzanne's wedding on 16 Dec where I'll be a bridesmaid. Had a "circle of life" vibe to it.... nice.

Tuesday, September 15, 2015

Surgery and weekend

Yesterday's surgery went well. I was done at about 10h30 and was back in my room at 11h30. Anesthetist said lungs did great. Afterwards my oxygen SATS kept dropping to 88% (normally in Joburg these days they are like 93% on room air) which was very annoying as the machine's alarm kept going off and I had to keep on taking deep breaths to get it back to 91%. Just wanted to sleep and eat my lunch, not take deep breaths the whole bloody time. Luckily they eventually just took the monitor away.

Gynae said afterwards in recovery that I almost have no cervix left.... and next time she would need to take everything out... Not sure when "next time" will be, she is going to call me with biopsy results when she gets them. And hopefully talk to lung Dr. Not nice waiting for news from Drs :-( Wish I could get the whole thing over and done with and get this cancer-threat off my back already,

Had a good weekend. Sat eve we had a braai and played Cards Against Humanity at Brendan's house. Was so much fun. Sunday we had lunch at my parents place and my bestie for 26 years, Louzanne,  was in Jozi for the afternoon, so she joined us :-) So excited for her wedding in Dec, she brought my bridesmaids dress with her, so now I need to go shoe shopping!!!!! Sandton City here I come (after payday LOL). ALSO, looks like I've FINALLY sold my wedding dress, so yay for some extra cash and LOTS of extra cupboard space!

Tomorrow is back to work, rest of the week will be BUSY. Will post if I get any cervix news.

Thursday, September 10, 2015

Surgery and Spring

On Monday I'm having parts of my cervix cut, cauterized, biopsied etc. My pap smear of 3 weeks ago showed abnormal risky cells. Again. This is probably the 5th or 6th time I'm having this procedure done since transplant. I've lost count. The joys of taking pills to suppress your immune system :-/ The last time I had this procedure done was in Feb.

What makes this time different though is that it took me by surprise. Previously I had gone for a check-up BECAUSE I thought something might me amiss, but this time I thought it would just be a routine check-up and all would be well. My Gynae also mentioned that there is not much left of said cervix after previous 5 or so procedures. So I don't know where this is going to end. One day at work my womb will probably fall out (this is a joke). Sorry if sensitive readers are scarred by too much info, but this blog is after all health-related, and I try to make it an honest account of my medical journey. Well not TOO honest because that would end up in people needing therapy but acceptable-honest.

On a more positive note, my garden is beautiful and spring is here in full swing. Sorry to everyone who just saw all these pics on Facebook and Instagram, but below are some pics I took this afternoon. Also, I've been to gym twice this week, so that's better than previous weeks. Will go at least one more time before Monday.

Sunday, September 6, 2015

Week of birthday celebrations

My week has been awesome (apart from some shitty gynae news which I won't spoil this blog post with). Chris took me out to my favourite restaurant on Monday night, Wombles. Had fantastic food there as always. Prawn and Avo Ritz, Fillet steak, and a surprise "Happy Birthday" desert. Really had a perfect day.

On Tuesday evening my parents hosted us for supper. It was great, especially seeing as it was the first day of month-end at work and took the burden of supper off of us. Rest of the week was fairly normal, and Friday night we went out to the Beeryard in Fourways with Fawn and some friends. Was loads of fun was was great catching up with her. Got home pretty late (or early!) and woke up with some great rain yesterday morning.

Last night I had friends over for a little birthday get-together. We played Cards Against Humanity, which is an awesome game we got in the States we stole Anna's game and ordered her a new one to be exact). So much fun and an awesome ab workout. Had a great time. And some awesome gifts, Really spoiled and very lucky!

To end off with, a comparison of me turning 23 vs tuning 31. These lungs have given me 8 BIRTHDAYS that I likely would not have had. EIGHT! That's fucking amazing (sorry, don't usually swear on the blog but in this case I think it's appropriate). LOVE the lungies!!!! THANK YOU DONOR LADY.