Of Lungs and Love

Life has been a blur of events this past month. I'm not even quite sure where to start.

My health has been amazing. I had a check-up on the 29th of May and it was one of the top 5 check-ups of my life I would say. My lung function hit an all-time high (with these second lungs) of 95% FEV1%, and volume (FVC) was 112% or so. All the numbers were up basically. Which might mean that the second Nissen Funduplocation might have just been a brilliant thing to happen to me, and maybe, just maybe, has given these lungs more years of life than they would have had, had the "too-tight" old Nissen remained. I'm back on my usual cocktail of anti-rejection meds, after it was changed when my Achilles tendon tore at the end of October last year, and my kidney function had already improved in just a week of being back on Certican. Dr said that my second transplant has exceeded all his expectations, and that he never thought it would be THIS good. So yay on that front. Physically I'm winning at life right now. Achilles tendon also doing great.

Relationship-wise I'm not. Chris and I have decided to get divorced. It was a very painful and difficult but mutual decision. So the next few months will bring a lot of changes. I will always be very thankful to Chris for supporting me and standing by me the past 9 years. We've been through more than a lot of couples go though in a life-time, and will hopefully stay a part of each other's lives to an extent, but not as husband and wife.

To add more legal admin to life, it's been 9 months since we've decided to dissolve our old organ donation NPO, Love Life; Gift Life, and it's STILL not anywhere near sorted. And the 4th director - who initiated the dissolution,  has left the country permanently without telling us, and now it will take even LONGER to get things rounded up. We worked so hard to promote organ donation in that organisation (as we are now, with TELL), for WHAT? Was it worth this crap that we're going through for the last year? At least we've learnt some lessons....

On top of getting divorced and trying to get rid of an NPO that we didn't want to get rid of in the first place, I also had a small car accident with another car on the highway 2 weeks ago. So my car goes in for repairs on Thursday. Not a big deal, and it could have been much worse, but still a pain in the ass, and not something I need right now.

BUT I am healthy and that's the most important thing. And optimistic about what the future holds. And I'm the aunt of this cutie pie. So that's enough for now. At least my life's not boring.

Bye bye 2018, Hello 2019

We're into the last 4 hours of 2018... Apart from the last 2 months, it's been a pretty great year for the most part. My 2018 New Years Resolutions were as follows:

• Take part in the National Transplant Games in PE in July (and hopefully go on to qualify for the 2019 WTG). DONE! And I qualified for squash... but then I tore the Achilles twice and now that dream is down the drain.
• Travel as much as I can, including at least one overseas trip. DONE! Did 2 overseas trips and a few local ones.
• Take my fitness above where it was at it's peak after my previous transplant. The years of rejection has made me value the capabilities of these lungs and what my body can do (given enough lung-power and training), even more. DONE! But at the peak of my fitness I tore the Achilles and now I'm back to being unfit with MONTHS of recovery laying ahead.
• Figure our working/ LLGL/ my life and priorities. DONE. More about the LLGL part a bit later, but yes, everything is sorted out now.

So I managed to achieve everything I wanted to.... technically. I'll figure out some new ones for 2019 soon. 

The highlights were definitely the holidays we took. Ballito, Eastern Cape, Mauritius, New York City, Two brief Cape Town Trips.

Starting to work for my friend Andrew has also been a highlight... the perfect job for me in so many ways. Seeing my nephew Adriaan grow a year older was also amazing. 

Another highlight was the fact that I had NO LUNG PROBLEMS the entire year. I had a bad reaction to two of my medications in May, and the Achilles drama recently, but no lung drama. And today marks 14 months with the new new lungs. So that's undoubtedly a highlight.

Fawn, Bonnie and I got to launch our new organ donation NPO called TELL, and we had a fantastic launch function. I believe we have the potential to achieve fantastic things, and I love working with everyone involved.

The lows... Pretty much right now. I've been sitting with my leg up for the last 2 weeks and I'm pretty damn frustrated. I'm going to end up having spent 3 months in a cast. I'm pretty depressed about not being able to play squash again, and I don't know how well these injuries will even recover to allow me to at least jog a bit again. My google searches have said about 6 months to be able to WALK normally again, and a year to recover "in full"... although it never FULLY recovers. I can however start swimming and some cycling sooner. But basically my tendons are clearly weak and I will need to take that into consideration forever. (I also need to have my bone density checked again early in the new year, because all I need now is to break a bone as well... courtesy of the lovely steroids too. 

The other low was the demise of Love Life; Gift Life, and the terrible conflicts that came with it. I've never experienced anything like it, and I still think about it with sadness, bitterness and disbelief. It's not even over yet, as the NPO is not legally dissolved yet, so undoubtedly even more crap awaits. I CANNOT WAIT for it to be over for good. And to focus all of that energy on TELL.

So that was the year in a nutshell. Spending New Years eve doing nothing, because it's too much effort to go out and I won't enjoy it. Hope you have a great 2019.

Transplant Education for Living Legacies

In March/April of 2016 three fellow friends and I created Love Life; Gift Life. At that point 3 of us had received double lung transplants, one was waiting for her first transplant, and I was heading towards being listed for my second transplant. I had just stopped working full-time, and started using supplemental O2 more and more. We started LLGL because we felt that the existing organ donation foundation(s) in SA were not doing nearly enough to promote the cause, and that they were going about it the wrong way completely.

During the existence of LLGL, one of us received a single lung transplant, I received my second double lung transplant, and one of us passed away. We also gained an amazing new member whose passion for organ donation equaled (and possibly exceeded) our own. When I was waiting for my transplant, it kept me going, and made me feel that even though I physically couldn't do much, I was able to create a kind of legacy to leave behind, while at the same time "giving back" to the cause. It gave me a purpose as well, especially on those days where things felt rather hopeless.

Unfortunately 2018 has been a very tough year for LLGL. There were legal issues with our name, which seemed to be the catalyst for a whole range of other internal conflicts which could not be resolved. In the end we voted to dissolve LLGL. I had hoped we would salvage SOME of what we've build up over the 2.5 years, but it will not be the case. It has caused me countless sleepless nights, and walking away from our "baby" after these 2 years with absolutely nothing to show for it feels terrible, but sometimes you need to know when to walk away from something - esp if it's not worth the anguish it creates. Life is too short to be dragged down.

It's not all doom and gloom though, three of us, Fawn, Bonnie and myself, have started up a brand new NPO called TELL! Transplant Education for Living Legacies. We're fresh and fun, full of ideas, have a wealth of legal and first hand transplant experience between the three of us, plus some amazing people who believe in us. What we lack in funds, we make up for in enthusiasm. I'm so SUPER excited about this!  If you're a follower of my blog, or even just happened to stumble upon this post, then please follow us on social media! Website to follow at a later stage...

Facebook: https://www.facebook.com/tellorgza/
Twitter: @tellorgza
Instagram: @tellorgza

Off to PE!

This afternoon I'm flying down to PE for the National Transplant Games! And to represent Love Life; Gift Life! Can't explain how excited I am... In 2016 I wasn't allowed to even attend the Games as a spectator, and now I'll be participating!

See below article in Sunday's Sunday Times newspaper that featured me and some other athletes. Wish me luck!

32 Days to go till New York!

You know life is good when you're struggling to find time to blog! It's all systems go for Nationals and after that New York. My fitness is really improving and my body really coming to the party! I had a check up a week ago, and my kidneys are behaving!!! Creatinine is down to 130, from over 300 when I had my diarrhea. Normal is roughly less than 100. So we're almost back to normal thanks to switching meds. Everything else was also great, in my Dr's words, "I don't think I've ever seen you look this well". Unfortunately hubby has been really sick with a cold/flu and I'm SO SCARED of getting it. Trying to live separate lives in one house at the moment... my nerves!

I also ended up having a spur of the moment eye test.... realised when I was playing squash that I need to play with contact lenses... So I wanted to go and buy some lenses, but apparently you have to do a new eye test before you can do so. Long story short... My latest transplant has affected my eyesight negatively, and prescription has changed quite a bit. I also need to wear an eye patch on my right eye for about an hour a day to try and improve my very bad left eye! Haven't gotten the eye patch yet, but will hopefully do so today. At least I got to pick really cool new frames...

We also had a great Father's Day last Sunday, with little Adriaan stealing the show and crawling even deeper into our hearts as usual. The day before that Fawn and I had a catch-up lunch with Aviva at a Vietnamese restaurant, which was also really nice.

Other than that things have just been pretty busy with Love Life; Gift Life, and of course preparations for Nationals. I also need to go to the dentist this week as I suspect an old filling is loose :-( I am really not a fan of the dentist! Rather give me any other type of Dr!

Have a great weekend and don't wait for Friday!

Life update (a non-holiday post for a change)

It's been almost a month since I've done a "normal" blog post! I was in Cape Town this past weekend, so there is another "holiday" blog post in the pipeline, but for now I thought I'd just do a catch-up post re life in general.

We drove back from Storms River on Easter Friday. On the Saturday was Adriaan's first birthday party!!! His actual birthday was on the 3rd of April. How much our family's lives have changed in a year!!! New lungs for me and a baby boy in the family! His party was great fun. He is growing up and changing so fast at the moment... every time I see him there is something different!

On the Sunday Andrew hosted an Easter lunch... The Roast Potatoes were AMAZING.... Possibly the best thing I've ever tasted in my life. The rest of the food was also bloody fantastic. What a great afternoon!

My last Dr's appointment was also brilliant. My lung function has increased by quite a bit from the previous time, even to my Dr's surprise. Everything was great, and I feel truly healthy, the breathing obviously being the best part! My lung function hasn't been this good in like 5 years. Hopefully it still goes up more, but if it doesn't that's totally fine. It's "normal". The sleeping-pill quitting is also going well. If I've been struggling for more than 3 hours to fall asleep then I take a quarter pill. It only happens about once a week though, 

I've entered for the National Transplant Games taking place in PE in July... my events are squash and 100 sprint! Lots of prep that needs to be done but I'm working on it!!!! I've upped my level of exercise, so hopefully I stay healthy (I had a cold a while back that lasted for 4 WEEKS!). I should be fairly prepared by then! Exciting times.

Love Life; Gift Life has been fortunate to attend 3 amazing lectures/talks in the last month or so. Two were at the WITS Ethics Symposium, and last night there was one by a Prof from Flanders.These have been so interesting and insightful. I would never have been able to do these kinds of things with the old lungs, my O2's battery power wouldn't last nearly long enough. Or my energy levels.

I also saw one of my school friends who lives in London now, James. He came to SA for his sister's wedding and spent a night with us in Joburg last week. Was super nice to catch up with him too. That's all I can think of now!

New Lungs, New Life... for a second time 💚

As most of you know I've been in chronic rejection of my bi-lateral lung transplant that I received in Jan 2008 since the beginning of 2013. I had a course of 24 sessions of Photopheresis in the period between Aug 2013 and May 2014. It was deemed successful as it drastically slowed down the decline of lung function that I was experiencing mid 2013. I was still able to take part in the National Transplant Games towards the end of 2014 in Stellenbosch (I couldn't play squash or do race walking anymore, but had some training in shot-put and discus. I was pretty bad at it, but I really wanted to compete!). At this stage they had never done a second bi-lateral transplant in SA before, but I hoped that they would consider me when the time came.

In October 2015 I as admitted to hospital with a Pseudomonas infection. I used to culture this bug with my old CF lungs, but never with the new lungs. However it loves diseased lungs and mine were now at the point where Pseudomonas deemed it a good time to return. After two weeks in hospital I went back to work. In January 2016 I was admitted to hospital again... not feeling well at all. A biopsy was done and unfortunately both lungs collapsed in Recovery. I was told that this was due to air trapping, which happens with the kind of rejection that I had. I woke up in ICU with 2 chest drains, and after a month in hospital I was able to return home, but I was now on oxygen 24/7. At this point I also stopped working. I was admitted another two times in 2016 with the same bug.

Towards the middle of 2016 I underwent the work-up process for transplant again. It was more comprehensive than the first time around. I had to keep my weight up even more and see a biokineticist twice a week, along with frequent Drs visits obviously (dentist, gynae, lung Dr, dermatologist, had scopes done...). I was placed on the waiting list again during the second half of last year. This year my lung function fluctuated between 24 and 30%. I was hospitalised again in August with a cold and returned home with another new bug :-(.

I was really starting to get depressed, as the work we do with Love Life; Gift Life has showed me how much is lacking with organ donation in this country, and how the number of transplants performed has declined since my first transplant. Somehow patients on the waiting list were being let down by some people who work in the field yet doesn't know what it feels like to hold your breath waiting for an organ, while seeing others on the waiting list pass away. I had to keep telling myself "If you hold out long enough, statistically there HAS to be lungs for you someday. By the way, please tell your family of your wishes to be an organ donor via our website! Your family are the ONLY people who have a say regarding what happens to your organs once you pass away, so if they don't know it means nothing.

A few weeks ago, shortly after midnight, my phone rang. It was my Dr!!! He said that they possibly had lungs for me!!!!! We had to be at the hosp by 3am. We calmly packed and got ready. I started trying to get hold of family members and close friends. I was extremely excited!!!! My mom and dad joined us at the hosp a little while later. The waiting part at the hosp was a bit of a blur... I tried reading, had to take a bath. Took a selfie. The time between the call and the transplant was a lot easier this time around! It was much shorter and we didn't have to fly from PE. I would definitely recommend to anyone on the waiting list to live close to your transplant centre! It takes off a lot of pressure! This also applies to post transplant.

They took me to theatre at about 8am. I wasn't nervous at all, just hoping and praying that the lungs will be good and that it won't be another dry-run (story for another day).

I came out of theatre at about 16h00. The surgery had gone really well, and I didn't need ECMO in ICU (only VA-ECMO in theatre). Read more about ECMO here. This is quite amazing, seeing as I'm a retransplant. With my first transplant I was ventilated for 4-5 days, so we expected the same at a minimum. However when Chris called the next morning I was sitting up, off the vent and talking!

I was so surprised when I woke up and heard that it's only the early hours of the next day! It motivated me to try and push myself to get out of ICU. My ICU experience this time around was much better though. Probably partly because I knew what to expect, and also because it's a new ICU which is much nicer than the old one! I did have some hallucinations of people talking and music playing, and I was quite confused a couple of times. Medically it couldn't really have gone any better though.

On day 8 I was moved to Section 7, which is a big step in the right direction. I still had 2 drains in... one of the big intercostal drains and a Euroset (which is actually also 2 drains). The intercostal ones are really thick and pretty sore. Thank goodness for pain meds!

The Euroset is placed in the soft tissue and not in the rib-cage itself, so they are much less painful.

It was a bit annoying though that the Euroset didn't want to stop draining and probably kept me in hospital for an extra 10 days! This is mostly a combination of a medication that I was on before this op that prevents healing (it was one of my anti-rejection pills), and the fact that it's a second transplant and they had to go through a lot of scar tissue. It gave me the opportunity to build up more strength in hospital though. The best part was getting rid of the supplemental oxygen after about day 10 post op, and walking around the hospital with no oxygen, drains still in but great O2 sats.

So I've been the first successful redo of a bi-lateral lung transplant in South Africa as far as I know. The last few years have been quite tough, so I'm really hoping that in the next few years Chris and I can live our lives a bit less stressed again, and that the easy breathing will continue. We would love to travel again. I want to take part in the World Transplant Games again. I also want to be able to do more for Love Life; Gift Life and help us transform organ donation in this country. Right now I'm still being monitored EXTREMELY CLOSELY, as all of this is a first and my Dr is being super vigilant. But at least all these dreams have a chance of becoming a reality now, thanks to my donor family. I have so much love for them that I can't actually put it into words (although I will try when I write them a Thank You letter). Thinking of them every day in their time of grief, especially with the holidays coming up :-(