2 years 5 months

Tuesday marked 2 years and 5 months with these second transplanted lungs. Coincidentally that miracle also happened on a Tuesday! (As well as my first transplant!.... it's my lucky day!)

Being in lock-down has obviously given me loads of time to think. And the recurring though is I'M SO F@CKING LUCKY AND BLESSED. How am I almost 36 and still here and doing better than ever? I'm still the only person in SA who has survived a redo lung transplant (which sometimes leads to survivor's guilt, but that's not what this post is about.) Is there another shoe waiting to drop? I was trying to count all the surgeries I've had earlier today with some Facebook quiz, and I got to roughly 20ish.

• 2 Bi-lateral lung transplants
• 2 Nissen Funduplications
• 2 Achilles Tendon Repairs
• Wisdom Teeth removal
• At least 6 Lung Biopsies
• About 5 gynae ops (immunosuppression related issues!)
• 3 Gastroscopies, one which included a colonoscopy 

Not all of them are significant but it's still under General Anesthetic (except maybe wisdom teeth, I think I was only sedated... and possibly 2 of the gastroscopies).

I've also had a renewed gratefulness for being able to sleep on my stomach. It's my preferred position for falling asleep, and I've been remembering many times when I've been unable to do so. I remember specifically quite a few times where my lungs struggled too much to lie on my tummy. This was with my original CF lungs, where I often had to sleep on 3 or 4 pillows to breathe better. I remember my back getting sore and just wanting more than anything to lie on my tummy but when I did, I either started coughing up blood or it just felt like I was drowning. The other significant times were after my transplants, due to the incisions. At least those were "positive" reasons, but it kept me awake at night, and with my Nissen Funduplications. I know this is REALLY random, but like I said... blame the lock-down.

I've also been thinking of stuff that's happened since my second transplant... in other words things I would have missed out on if I didn't get a second donor. This was what I could think of (in no specific order):

• Holiday in Ballito
• Two holidays at Storms River Mouth
• Family holiday at Evelyn Game Lodge close to Mapungubwe
• New York trip
• watching my nephew Adriaan go from being 6 months old to turning 3 tomorrow
• getting a divorce
• moving into a flat and living on my own for the first time in my life
• working for Andrew
• joining a running club and doing Parkruns
• going to the UK and Scotland
• dating
• getting a new boyfriend
• Two trips to Cape Town
• going back to gym
• started playing squash again, tore the Achilles tendon twice and now don't play anymore
• co-founded a new NPO, TELL
• holiday with friends in Mauritius
• in lock-down for a global viral pandemic!

I added the good and the bad, because it's all part of being alive. And I wouldn't have wanted to miss any of it. I hope everyone's lockdowns are going well. I'm still all good, trying to stay sort of active. Sleeping a lot. Eating a lot. Be prepared for more random posts relating to stuff that pops up in my memories!

Achilles Tendon journey

Yesterday marked a year since I tore my Achilles tendon playing squash. Largely due to years of being on Prednisone, combined with squash and bad luck. It's been a long recovery.... much longer than any of my lung transplant recoveries (how crazy is that??). It's still quite a hectic scar... I try to remember to put tissue oil on, but I forget. All that I really care about is that everything is functioning again and I can DO STUFF again! Below is what it looks like now... All the other scars on my body look great, so hoping this one will eventually follow suit.

The timeline was as follows:

26 Oct - tear tendon
1 Nov - surgery to repair tendon
14 December - cast comes off and instructed to wear a wedge heel.
17 December - fall in my parents' garden and tear open the entire thing, splitting it in all directions (did not post a pic of that, some people might faint)
17 Dec - second surgery to repair tendon and replace with artificial tendon
1 Feb - cast comes off and I get a moon-boot
Wound doesn't look great at the bottom so many visits to wound clinic.
17 March-ish - Moon-boot comes off. Slowly start walking "normally" again.

It took MONTHS to gain muscles back in left leg, a lot of physio... left calf muscles still not back to normal yet. Had to withdraw from the team for the World Transplant Games in Aug this year :-( See pics below (sorry if some of them are still gross):

In other news, TELL was featured in the Rosebank Killarney Gazette last week, and in the Times Online two weeks before that, which is great.

Andrew has also helped me hang my pictures in my flat, so it's really looking nice. The Jacaranda trees are also looking stunning! Pics of all of the above below! ONLY 3 MORE SLEEPS TILL MY 2 YEAR LUNGAVERSARY!!! Will blog again later in the week!

Car accident, divorce, and awesome people in my life.

So much is happening, please excuse if this post is all over the place.

Divorce update: We signed the settlement agreement yesterday. So from our side everything has been done. I'm moving out into a little loft style cottage in Linden on 1 August. The cats are going to my parents. I'm busy packing and throwing out stuff that I don't really want or need. At the same time I'm buying items that I WILL need. Emotions are up and down. It's sad, but at the same time the future is also exciting. It's really the end of a massive chapter, and I will miss all of this. I'm hoping that by my birthday (31 Aug), things will be much better and I'll be settled in. I'm also very glad that things aren't ugly and that everything is very civilised between Chris and myself.

As if all this crap isn't enough to deal with, I was in a proper car accident 3 weeks ago. I was driving a rental car, because my car was being repaired after a small accident that I mentioned in my blog last time. Another car skipped a red traffic light while I was turning right, and t-boned me. I was taken to hospital in an ambulance, but luckily I didn't get seriously injured. My left hip was super bruised and banged up, lots of random bruises on my legs, arms and right knuckle. The seatbelt buckle also cut into my tummy a bit.

Apart from the excess I had to pay for the first accident and this accident, the towing company who towed the car was not authorised to do so by the car rental company, and they charged a fortune. All I can hope for now is that the funds will be recouped from the other driver who was at fault. At best I'll get the funds back in 3 months' time. It's so depressing how much I have had to spend on cars this month!!! The pic of the bruise was taken on the day of the accident... it ended up looking much worse, but at least it's much better now.

I had a great lung check-up again at the beginning of the month, my lung function was the same as last time, still at the all-time high. Thank goodness THAT is going well right now. My CMV viral count is still positive, so Dr has adjusted my meds a bit.

Fawn and I was also on The Gareth Cliff show one Friday morning. I was on his show exactly 10 years ago, before the Australian World Transplant Games. So I kind of felt like it was coming "full circle" being back on air with the second set of lungs. You can listen to the interview here.... listen after about 28 minutes though.

http://cliffcentral.com/gcs/extraordinary-stories-of-organ-donation/?fbclid=IwAR36AOLFVnIzXL2Jn5iHcsB-SYidpfauyiQQlhsJMpdvgbKn06atndNuwe8

Just after my previous post, my mom and I went to visit my aunty Deanie, who we haven't seen in a while. Still the brightest 90 odd year old person I know! She googles, checks her e-mails once a day, still drives herself around JHB! A remarkable no-nonsense person.

Fawn and I also had a great catch-up lunch with Aviva at The Fireroom in Montecasino. Sushi and gin...... it was YUMMY.

I stayed in my parents' house for two weeks while they were in Greece earlier this month, and my friend Bonnie stayed with me some of the time. It was super fun just having a "girl's night" vibe and chilling by the fire.

This past weekend was Andrew's birthday, and 9 of us went away to a house he rented for the weekend. It was just what I needed. Getting out of the city, catching up on some sleep, laughing so hard your abs hurt. It was strange to go alone, and I guess it will still take some getting used to.

Lastly... despite all my complaints above, physically I feel like I'm in a better place than I have ever been. I'm not as fit as I've previously been, but on Tuesday I was able to run a little bit again for the first time since October last year before I tore the Achilles. (This was supervised by my bio! I wouldn't have the courage to try it on my own!) So my body is feeling strong overall.... no reflux... and lungs are pristine for now, I'm physically feeling better than I did for most of my life by far. In fact, I almost feel like I need to make up now for all the life I missed out on between the ages of 18-23 and 32-33, when I was waiting for lungs again. I was THAT person in the gym 2 weeks ago, who took a photo in the gym, because despite my accident-bruise, I don't think my arms have ever looked this strong :-) After these last two months, I think it will be more than just my arms that have grown stronger...

Meeting first donor's son, Achilles and Nissen updates, "gaybe" shower...

It's been almost a month since I've blogged! There's just too much happening, I don't have time to sit down and type a post! But let me try and do a quick update, for those who don't see me often, and don't want anyone thinking I died or something!

Health-wise, nothing has happened on the lung front, but I had a check-up with the gastric surgeon, and he is 100% happy. I can now eat all food again, yay!!!! HOWEVER if I eat too much I feel terrible. And my capacity to eat is a lot less still than it used to be. So I just need to be mindful of that. I can also drink my meds in pill-form again, yay! No more gross liquids! Surgeon said that my previous Nissen was badly positioned and executed, and that he reversed it, and moved it up 4cm. So far it definitely feels like it has worked... no reflux-type feelings. May the lungs be forever free from foreign food objects now!

Achilles tendon is looking OK... better than it did!!! Like a million times better! Muscles still have a long way to go though. It will take MONTHS to heal properly. Working on it.

I've been BEYOND BUSY with our NPO TELL. Our website is up now. Our #makeitknown campaign is in full swing. Did a radio thing on Friday night that you can listen to here. In case you don't know what that is... we've got a campaign going where people are getting quotation mark tattoos so show that they're committed to being organ donors one day. The reason for the quotation marks, is because organ donation is a conversation, and it shows they've had the conversation. Even Chris has gotten the tattoo!! So we've been liaising with tattoo studios across the country. It's been really exciting and hard work at the same time.

What's been super special, and I meant to blog about this earlier, is that at the first #makeitknown tattoo day on 15 April, I finally met my first donor's son in real life. I've met his aunt many years ago, and I've been Facebook friends with him for a long time, but he came for a organ donor tattoo and we met :-) It was really great. (yes yes, you're not supposed to know who your donor family is, and they don't tell you, but in our case the media was involved, a documentary was done, and two and two was put together. Long story... which I don't feel like getting into.) Bottom line is, it was so amazing to meet the guy who played such an important part (probably THE MOST important part) in the almost 10 years that I had with my first donor's lungs. We both have tattoos in honour of his mom... he has a big one on his ribs, and I have the date of my transplant. So we even got some pics of our tattoos together... so surreal to see those dates next to each other.

Our friend from Cape Town, Ditha, was here at the beginning of the month, and we had a great baby shower for her! Or rather "gayby" shower! Ladies and gay men! It was LOTS of fun!

Last night was also quite fun. We all went through to Pretoria in an UBER van to a 40th birthday party! Between that and Friday night's late radio interview I need to catch up some sleep, but it's all worth it!

New Year's Resolutions 2019 and garden make-over

My New Year's Resolutions are similar to last year's ones... Don't want to go into too much details, but here they are:

• Look after lungs/health as much as is humanely possible and avoid rejection. This means religious check-ups, bloods, x-rays, being in touch with my body and acting upon it if anything feels off... avoiding infections at all costs, never forgetting my pills, and also just looking after the other stuff that is affected by CF... diabetes, gynae checks, bone density, dermatologist. 
• Travel as much as finances and my Achilles tendon allows for. The ultimate would be to see another country again!
• Recover from Achilles tendon tears and be able to maintain fitness without playing squash or any other such risky activity. I'd like to start swimming again, maybe as a more serious sport (if I'm any good at it). So by the end of they year I'd like to be fitter than I was at the end of October, when the first tear happened. I refuse to let the years of cortisone cripple my life completely. F@ck you CF.
• Enjoy every moment of quality time with family. 
• Buy less and save more. I have enough clothes, and I think we have everything we need in the house. I want less clutter (our house isn't too bad, but I've been throwing out a lot of old sentimental stuff that I've been keeping for YEARS... I'm trying to be more brutal with what I get rid of. I'm also organising cupboards one by one - anyone else watching Tidying Up with Marie Kondo????). Plants don't count... but I will try to think twice before buying it!
• Make a bigger success of TELL than LLGL ever was. We can do it. 
• Just appreciating every single day... good or bad. At the moment most days feel frustrating due to my injury, but if it wasn't for my donors I'd be dead twice already (if that even makes any sense). Both of my donor's families would give anything to have their loved one back. My "bad day" is nothing compared to having lost you daughter/mother/wife/sibling.

That's it! In a year's time we'll see how well I did! 

This is my 10th week of being injured and pretty much in a cast. One positive thing however has been that I got to see quite a bit of my nephew Adriaan. Not due to my injury per se, but just because he has been on holiday as well and I've been very available! I love the little man so much, and he has really brightened up my December! Here are some pics, including some Christmas pics (I never even blogged about Christmas.... it was chilled... just spent with my family and eating too much).

My other exciting project for December was a bit of a garden make-over! I've always loved gardening, but during the last few years that I've been too short of breath to do much gardening, it has become neglected and quite overgrown. I decided to get a little bit of professional help in, and had a local business assist with some landscaping. They put in new borders for the flower beds, and took out some pavers that were at the bottom of the garden that I didn't like and didn't serve a purpose.  They also took out some of the irises that had gotten out of hand. Here are the before, during and after pics! Ads and my sister also helped with the planting of some new plants for me, as you can see!

I think it's looking so much better now! And we've had some nice rain, which is helping. By the time summer is over it will look pretty great! Very happy with the result :-)