Tuesday, October 2, 2018

It's October!!!! Health and other updates.

So September just flew past!!! And October promises to be even more busy! Some random updates and stuff that happened in Sept below...

I joined a squash club. In order to re-qualify for the World Transplant Games next year, I have to be scored on certain criteria by a qualified person, as well as join a club. So I'm busy working on that. I'm playing a game tomorrow morning against a coach who will assess my level of playing. Quite nervous! And before that I'm off to the dentist for a tooth that I hurt by biting on a hard sweet... I think I messed up an old filling.


Spring is here (and in Joburg that basically means summer is here... we don't have much of spring. It's winter and then summer.), so I've re-potted some of my pot-plants. I'm not done yet, but the plants are a bit more organised now. I have a very clear pot-pant addiction!






Chris has a work function with a 1920's Gatsby theme, so that was fun to dress up for:




I attended another fancy event, at the same venue actually! My good friend-since-forever Andrew was a finalist in the "Top 35 under 35" Chartered Accountant awards. It was such an uplifting function to attend (while at the same time making you feel like SUCH an under-achiever!!!). Very proud of him!



I've also been able to spend some quality time with my nephew this past weekend... love him SO MUCH!!!!



Then LASTLY, two days ago was basically my 11 month lungaversary! (Sept doesn't have 31 days...). Despite having a cold two weekends ago, I'm doing SO WELL! Had a Dr's check up yesterday. In summary:

  • kidneys are the best they've been since re-transplant. Creatinine was 116, the lowest it's been in almost a year. Thanks to stopping the Advagraf and switching to Neoral and Certican, whoop whoop! (normal levels are under 90 for women and under 110 for men, according to Dr Google, so my kidneys are ALMOST like those of a normal man!)
  • liver numbers and heamoglobin was normal... previously these were issues. Dr commented that I'm doing something right.
  • FEV1 was up! (at first the machine said it was down, but then Dr realised the predicted values had changed incorrectly - the machine was moved and re-calibrated- so I don't know what the % value is but it doesn't really matter.
  • long-acting insulin has been switched to night-time, as I've been having some low blood sugars in the mornings... this might help.
  • Dr said "You have big lungs"... as someone who is on lung 5 and 6 in my lifetime, this feels like a compliment. I LOVE big lungs... filled with AIR (that is not trapped, LOL)!
  • x-ray looked great.
Needless to say I'm super happy and blessed. I will never take a single second of this good health for granted. I can safely say "you REALLY appreciate the value of easy breathing when you've lost it twice!". 


Friday, September 28, 2018

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


Friday, September 21, 2018

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!


Friday, September 14, 2018

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.





















Sunday, September 9, 2018

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.