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

Rare Diseases Conference 2018

I was fortunate enough to attend RareX 2018 on a scholarship from Rare Diseases SA! It was a four day conference, with the speakers ranging from doctors and representatives from the Department of Health, to parents of children with rare diseases.

My cousin Mia also attended... she suffers from Guillain-Barré syndrome (spot the other curly-haired girl!). Apart from being able to catch up with her again, I met some AMAZING fellow rare disease warriors. Networking and meeting these guys were the best part of the conference... (and the FOOD!). I thoroughly enjoyed myself. It was quite eye opening how common CF actually is, compared to most of the other rare diseases. And how lucky we as CF patients are to have a consensus document available regarding treatment. AND that apart from the new drugs on the market like Orkambi, our treatments are fairly easily available. (YES, it's a bit harder if you don't have medical aid, BUT some other patients need meds imported from overseas every month in order to stay alive. Some of these meds can ONLY be administered intravenously, so they are on a drip FOREVER). Also, other CF patients might not agree with me, but we are lucky to have the transplant option available to us when you reach end-stage CF. For some their disease is degenerative but with no "escape hatch" at the end.

 

As fate would have it, I also met Corne, who donated my Rare Bear to me a few months ago! Corne suffers from Ehlers-Danlos syndrome. She's had over 35 surgeries as a result of the condition (or side effects of the medication). Again... perspective!!! If YOU would like to donate a rare bear to someone (please do!), follow the link here.

The Saturday and Sunday afternoon were "workshop style" sessions, where discussions were had on practical ways to solve the problems that patients/caregivers/others involved in rare diseases face. Well done Rare Diseases SA on a fantastic and well organised conference!

Meeting up with my "CF Twin" Anna in New York, and The Cloisters

As fate would have it, while we were in NYC, my transplant friend Anna was also passing through, on her way back from the American Transplant Games... (she lives in Australia now). I got to see her and catch up a bit for an evening. Definitely not enough time to catch up AT ALL but better than nothing... We had supper in Times Square, they went off to watch a show, and then we met up again for drinks.

Earlier that day, we went to The Cloisters with James and a friend of his.What a totally different experience! It really felt like we were in Europe. It was EXTREMELY hot on that day, as you can see from my picture taken with James! My favourite artworks on display here was the Unicorn Tapestries. So beautiful, albeit violent!!!

The Met Cloisters, located on four acres overlooking the Hudson River in northern Manhattan's Fort Tryon Park, is the branch of the Museum dedicated to the art, architecture, and gardens of medieval Europe. Deriving its name from the medieval cloisters that form the core of the building, it presents a harmonious and evocative setting for more than 2,000 exceptional artworks and architectural elements from the medieval West.

Recent losses in the CF community...

The past 3 weeks has been a terrible time in the CF community. Three people that I knew (two from Facebook and one in "real life") passed away, all more or less directly after transplant. All three were wildly excited when they got the call for new lungs, and none of them ever left the hospital. They all passed away from different complications. They were all 25 and younger... the same age I was with my first transplant. RIP Vanessa (25), Storm(22) and Claire(21)...

This article basically sums up my thoughts about the life expectancy with CF exactly:

"the median age of death for people with cystic fibrosis in a given year remains BELOW 30 years old, and has for quite sometime.

Simply put, half of the people cystic fibrosis kills are younger than 30 years old."

It is encouraging that according to the American Cystic Fibrosis Association "In 2016, the median predicted survival age of those born in 2016 was 47.7 years (95 percent confidence interval: 45.6-51.1 years) as compared to 41.2 in 2015". I doubt that this will be the same for SA, as we don't have access (definitely not easy access and not for your average South African family) to some of the groundbreaking new medications like Symdeko, Orkambi and Kalydeco. It should definitely give parents of newly diagnosed children/infants with CF hope though. And hopefully by the time that children born with CF now need transplants, those will also be a lot more advanced, AS WELL AS the medication to prevent and treat rejection.

If you want more info on understanding the medial age of survival, read this article.... however I wouldn't suggest reading this on a Sunday evening when your brain is sleepy.

For those of us who are older though, these new statistics mean nothing. according to this article, "Historically, children with CF died as infants, and as recently as 1980 the median survival was less then 20 years. ". This graph is pretty cool... I was born in 1984, at about the time the first lung transplants started being performed for CF.

Something that's hard for me to understand, is why both my transplants went so well, with no complications, when the same wasn't true for Storm, Claire or Vanessa. I know there is no point in thinking about it, as EVERYTHING in life is basically unfair. But it sure as hell makes me feel extra grateful and blessed. And more adamant than ever to enjoy life.

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.