Turning 40, moving Isle of Man and 7 Year Lungaversary of the 2nd set of lungs

I started this post about 2 months ago, just before I turned 40, but I was overwhelmed by how much there was to update that I gave up. So let me try again, this time for my 7 year lungaversary, WHICH IS TOMORROW!

Arno flew over to the Isle of Man on the 27th of July, and I followed on the 12th of Aug. It was a long journey, with 4 overweight bags, and very heavy/bulky hand luggage! Saying goodbye was obviously hard, but the new adventure awaiting was exciting. Especially after all the months of (what felt like) blood, sweat and tears to get the visas. 

We are renting a cute cottage in Ballabeg (although the car has already changed from that pic!), in the south of the island. I managed to get a job 7 minutes away from home, which is a massive change from my Pretoria-JHB commute. I started working on 1 Oct, it's been a month full of learning and getting back into a routine. Getting a job was stressful, as I applied for various positions at the same time, and you end up juggling interviews and try to hold off on making decisions while waiting for other companies to respond etc. But all in all I'm fortunate to only have been unemployed for 2 months in total, which was perfect for saying good byes on the SA side and settling in on IOM. I spent a week with my parents at their holiday flat in De Kelders, which was very special - apart from the fact that I had a cold.

We are STILL waiting for our cube with some furniture, clothes, crockery, books etc to arrive... it was delayed at the port in Durban, and now it's sitting in Liverpool, waiting to be brought over by a local removals company. 

The kitties arrived 2 days after me, they travelled for like 5 days. First 2 days in Joburg for private and state vet checks, then Frankfurt, Londen, Liverpool, IOM. My baby, Tay, has not totally adapted, he tends to stay upstairs, he is scared of going downstairs (we think it's the sound of cars driving past - we're on a main road). He is also scared of the wind when it blows. I'm hoping he gets a bit better, and hopefully the next place we live in is not as close to a relatively busy road.

The biggest challenge so far for me has been getting all my medical stuff sorted. I have an appointment with the Liverpool CF Team on 6 Nov, and waiting to get an exact date from Wythenshawe Lung Transplant unit in Manchester, but I'm "pencilled in" on the 8th. It seems like I'm the only lung transplant recipient on the island so it's been a bit of a back and forth to get me referred to the right centres. Manx Care (the local version/branch of the NHS) pays for the transport to these appointments, which is pretty awesome. I received airplane tickets in the post for the Liverpool appointment, and expecting the same soon for Manchester.

We celebrated my 40th with a boat trip to the Calf, a little island below the mainland (the mainland is the Isle of Man, NOT the UK. The UK is "across"). It was lovely! Can't even believe Im 40, that's a whole different mind boggle!

We've also had our first visitor, Carli! One of my oldest friends (not in age - we differ exactly 2 weeks!), who lives in London. It was great showing our home to someone special to us. Next up is Annelie and Bernie for Christmas! Will be nice to share Christmas with family.

Ending off with my LUNGAVERSARY tomorrow! It feels like so much longer than 7 years, considering everything that has happened in those 7 years. Travels to New York, Mauritius twice, UK twice, Norway & Sweden, got divorced, lived on my own, lived in a garden cottage by my sister, dated, moved in with Arno, got a proper job again after being disabled as a result of the rejection I had, became an aunt again, survived a pandemic... just so much LIFE in these 7 years! Tonight 7 years ago a family lost their wife/mother/daughter :-( Words are not enough to say how grateful I am, it just seems lame. But I hope she looks down on me and smiles. Alongside donor nr 1.

Oh and by the way, I saw Aurora!!!! 

Deaths, statistics and lung functions!

This past few days, two people that I knew in the lung-community passed away. Amber was 14 years post transplant. I've had contact with her since my first transplant, and she sent me a copy of her book when I had that transplant. She's had chronic rejection for a while, and from what I can see on Facebook, picked up an infection over the last few days and passed away. My heart breaks for her husband and little boy Noah.

Gontlafetse was a Pulomary Hypertention patient here in Joburg, who got lungs a few weeks back, but didn't make it :-( I've met her a couple of times when she's been in hospital. RIP girls...

“There are three types of lies -- lies, damn lies, and statistics.”

I'm really hoping the above quote is true. The statistics for a redo bi-lateral lung transplant are pretty terrible. In about 6 weeks' time I'll be part of the 32% of people who've made it 24 months post second transplant.

In any case, I had my best lung function EVER with these lungs today! Soooo chuffed. Been stressing because I've had a sore throat for the last 2 days that I've been doctoring. Lung volume was 120% and FEV1% was 97%. WHOOP WHOOP! Soooooo relieved. To hear your lung Dr say "There is NOTHING about your health that is a concern right now." is like a miracle. Next appointment is on my 2 year lungaversary!

My birthday was fantastic. I had a great time with friends and family, and attended a fancy event on the evening of my birthday on behalf of a fellow transplant athlete. I enjoyed the dressing up! Here's to 35 being the best year EVER!

Last day of being 34

Tomorrow I turn 35! Age is just a number though and so much more so when you've had your lungs replaced twice, meaning your life has had some severe ups and downs in terms of how old your body feels. I feel SO MUCH BETTER now than I did at 17... than all the years leading up to my first transplant at 23 years and 5 months of age. When my chronic rejection started at about 28, I started feeling older again. And exponentially older of each year after than, all the way to 33 years and 2 months.... to the day... when I received my second transplant. Before both transplants I felt 120 years old. My body didn't want to move. It wasn't getting enough oxygen. My brain didn't want to think. I didn't want to stay out late, because I got tired easily, and it meant the next day I would struggle more. I avoided walking. I didn't want to bath or take a shower, it left me blue and panting for breath. I needed a power supply almost constantly, to keep my portable O2 concentrator plugged in. I could barely pick up my 6-month old nephew.

Now however, I feel fit. I feel strong. I have loads of energy. I'm living on my own. I can plan overseas trips again. I can take pics of my muscles in the gym, because a) I can gym, and b) there are some small amounts of muscle, that has not been the case for most of my life. I can do stuff with Adriaan, and pick him up and carry him even though he weighs a lot more than he did at the age of 6 months! And apart from all of that, it's a freaking achievement for someone with CF to reach the age of 35, especially considering the level of CF care that patients in SA have access to. None of the new CF drugs like Symdeko, Kalydeco, Orkami... because they're too expensive. (but that's another rant for another day). A few Drs have said to me that I'm the oldest CF patient they've ever seen :-)

I've been doing loads of radio and TV interviews this month, with August being organ donor awareness month. Just one more to go as fat as I'm aware of! I've loaded a few pics below.

Tomorrow also marks 22 months with the new lungs. Ever since the first transplant, 22 has been a lucky nr for me. And I have a bit of a thing for numbers and dates, so 22 months with the new new lungs feels quite special. Happy lungaversary lungies. Tonight I'm having supper out with friends to celebrate, followed by a weekend of celebrations basically! Whoop whoop! May the second half of my 30's continue being as good as things are now.

August, my 34th birthday and 10 months lungaversary

There's only about two more NY blog posts left, but so much has happened since we're back that I need to do a normal post again!

Firstly, I got to see my friend Joey who lives in Quatar! She spent a night in Jozi with us on her way back home after a visit to SA. First time I saw her with the new lungs obviously. We had a great time catching up!

Also, I had my hair cut short... it's the shortest it's been since I was a kid! It was pretty badly damaged from the transplant and subsequent changes in medication. Hopefully this is a fresh start for the remaining hair!

I gave a talk at the annual Organ Donor Memorial Day on the 26th of August. It takes place at the Memorial Gardens in Fourways. It was MUCH more emotional for me that I expected it would be, and I felt like an idiot because I started crying the moment my speech started. I almost never cry. I've considered it worrying how little I cry... like I'm dead inside when it comes to certain things. Well I can rest assured that when it comes to my two donors, I definitely am NOT dead inside. The below pic listing the donors of 2017 is especially touching... one of those people saved my life last year, and I don't know which one. I would recommend all recipients and donor families in SA try to make a point of visiting these gardens at least once. There are two sections in honour of donors. E-mail me and I'll explain to you how to get there!

I have also started attending spinning classes at the gym again, for the first time since early 2013. I love it, and I find it even easier than I did back then! I was a bit nervous with the first class but I did just fine, even outlasting a few other people in the class.

Last Friday was my birthday! The day itself wasn't great, due to some unnecessary stuff that I'm trying to resolve this week (looonng story), but the evening and weekend was great. We had supper with 7 friends at Van Der Linde in Linden. The food was AMAZING, although slightly pricey. We had a great evening with some of my favourite people. Thank you to all my friends who wished me a Happy Birthday and made the evening and weekend special. I love all of you.

P.S. If my hands look like I am a leper, it's because my dermatologist went crazy and burnt 25 little warts/marks on my hands. Lovely.

On Saturday morning Chris and I went to Emmarentia Dam with my sister and Adsie. He is really too cute for words, and I love the little man so much. He has such a happy and friendly little heart, I almost don't want him to grow up! He ran after the ducks, wanting to hug them or some such, and then we had some snacks under a tree. Later in the day they joined us for lunch which was also great. Thereafter Chris and I went for an ice-cream, and watched the sun set (just in time) from Northcliff Hill. On Sunday I met up with Brendan and Marius to support "their" Love Norwood Day. A very cool initiative and quite fun. Wish we had something like that here in Fairland. All in all a great birthday!

My birthday also happened to fall on my 10 month lungaversary!! How cool is that? The first double digit monthaversary (probably not a word). So grateful obviously. May there be another 10 years.

Then LASTLY, I promise, my blog was chosen as Best CF Blog for Motivation! Check out the new badge on the right side! The bright yellow one! It's super cool! Read more here.