It's the 22nd again! Another bonus month of life that I wouldn't have had if it wasn't for that wonderful lady :-) A month ago I was on the Golden Gate bridge... miss our holiday so much!!!! But now that I'm all rested and recovered from the jet-lag I'm enjoying being home again.
Medical updates: Saw gynae on Thurs, waiting to hear results. Filling in my tooth fell out yesterday so now I'm seeing dentist on Monday :-( Dermatologist will just have to wait. Bleh, hate dentist.
On a different note, my very close and long-time friend Andrew who is following his dreams started a blog a while ago.... Andrew Hector Interiors. Added it to my blog list so the link will always be there for you with the latest post. Also follow him on Facebook. I admire his courage to take up studying again after a few years of working as a Chartered Accountant (and while still doing so) and making the type of changes in his life that other people might frown upon, but he is moving towards doing what makes him happy. Maybe one day I'll figure myself out a bit better and do the same! I love having positive "go-getter" friends who make the best of life, it gives me energy and motivation. Andrew is just one of them but I believe the people you hang out with influence you much more than you realise and I'm proud of the people I call my friends.
So in a strange combo of the topic of "interiors", and being blessed with the breathers, and being recovered from our trip, below is our fridge..... I collect magnets (if that wasn't obvious from the pics) and our fridge is like a travel collage that makes me happy.
Don't feel like I have much to say, but also been pretty busy. So excuse me if this post is very haphazard! Firstly, congrats to the Lowe family for the LeadSA award that Jenna won posthumously for the amount of people that she inspired to sign up as organ donors. Her legacy will hopefully save many lives in the future.
Last week feels like a blur, I did however get to see lung Dr, and all OK. He doesn't think there has been a real change in lung function since my previous visit on 4 June. Weight exactly the same. Bloods were fine and he didn't mention the x-ray so I assume there was nothing remarkable there. Going again on 30 Sept (tentatively I guess!) and the middle Nov to wrap up the year. On Thursday it's time for the gynae and have to make a plan to get to dermatologist as well soon.
This weekend we had such a cool transplant/CF friend get-together. We were 4 couples and had a great time playing Cards Against Humanity (that Anna introduced me to), and doing a little baby-shower thing for Shaun (who had a transplant)'s wife Alet who is expecting twins. It was very special and we had some great food as well. Pre-transplant CF people are not advised to hang out together, due to the risks of cross-infection. So it's always so cool when you get to hug another CFer after knowing them for years but having always had to keep a distance when they've gotten their new lungs. It was the case with Fawn, and last week I finally got to hug Charlene for the first time. I'm NOT a soppy person, but I think it's so special to be able to be in close proximity to someone who knows exactly what you have been through, especially if you knew the pre-transplant and pretty much only kept in touch electronically or from a distance wearing a mask. Love these guys!
Yesterday I did a crap-load of gardening and garden-shopping with my sis. I re-potted all 4 my orchids (3 of which are going to flower again this year!), re-potted a whole munch of succulents, tried to clean up the flower-beds etc. lower back and hamstrings feeling it today. So exciting to see spring rearing it's head. Can't believe Aug is halfway and in 2 weeks' time it's my birthday!
Needless to say this week has been a ROUGH one. Jenna's death devastation emotional roller-coaster, and Charlene's AWESOME transplant recovery updates that have been such an upliftment on the other hand. My mom's birthday was yesterday, and we had a nice evening at their house. Afterwards I did and interview for the Saturday Star newspaper, that will be featured in this weekend's edition. Got to bed really late and struggled to fall asleep... thinking about Jenna and Charlene and trying to figure out why my transplant was so easy and basically just suffering some survivors guilt as one does. I added a very touching radio interview with Jenna's mom to my previous blog post (at the bottom). Listened to it this morning and it was so raw and honest.
Work has been super busy, but that means the days fly by, which is a good thing. In exactly a month's time we arrive at San Francisco airport!!!! Doesn't quite feel real yet to be honest. And rather depressing to see the rand weaken against the dollar :-/ But nothing will spoil our fun.
Back to Charlene... she is a rockstar.... see pic below taken 2 weeks after her op. Just waiting for the last 2 drains to stop draining, and then she is well on her way to going home :-) Went to visit her yesterday and it was great. WELL DONE CHARLENE!!!!
This is not an easy post to write, because I didn't know Jenna well. I became aware of her trust and campaign in Oct last year (and blogged about it). I thought it was a great way to raise awareness and very clever. In November the Organ Donor Foundation asked me talk at the launch of SPUR's #save7 campaign that was started as a result of her plea for people to become donors (read about the event here). Jenna also spoke via a recording done, and I could see that this was a very sweet and determined girl. I really hoped for the best but in the last 7 and a half years I've seen quite a few people who didn't get their lungs in time so I knew it was a very real possibility. She had also won a LeadSA award for getting for getting so many people to sign up as organ donors, and many people on the waiting list for organs were touched by her efforts.
Last year on the 10th of December I heard that Jenna was getting lungs... I was on my way to Cape Town for a long weekend with friends, and we were all ecstatic for this young girl. Coincidentally this article was in the Marie Claire magazine at the same time, and I immediately bought it! I was soooo excited for the possibilities that lay ahead for her and was sure she would get through the transplant with flying colours with all that inner strength and determination.
Another article...
Some YouTube video's...
On a breakfast show called Expresso...
#Getmeto21 case study....
These are just a few of the MANY MANY video's on YouTube.
I met her 3 times after her transplant in hospital. I immediately loved her mom as well, and it was striking how close they were as a family. Her room was filled with pictures of them and well-wishes from friends and family. She was an amazing girl, and was so patient and brave, I would never have survived 6 months in hospital. Six months of being uncomfortable, in pain, immobile a lot of the time, frustrated, being poked and prodded... I would NOT HAVE COPED. Yet she fought, and her family fought with her. In those 6 months they had so much hope, turmoil, excitement, fear.... to name just a few of the emotions I can imagine. Yesterday however all the severe complications that she had been facing became too much and she lost her battle.
I cannot even begin to describe how sad I am for her family, and how cruel and tragic this is. It is so utterly unfair. Often people don't survive transplant, but to fight THIS hard and then have all that taken away????? I don't know how parents or a sibling recover from that. My guess would be that you never truly do.
People also often forget the medical staff involved.... Jenna's home nurse, whom I also met once and who was amazing, the ICU staff, the surgeons, our amazing transplant physician, the Section 7 staff, the physio, and entire transplant team who work so hard and invest to much into each transplant.... They also get attached to patients like these and are expected to carry on their duties as before when something like this happens. They also need to remain positive for the sake of the next patient even though they are hurting inside. Some of the toughest jobs in the world.....
There is also her boyfriend, many friends, other transplant patients and especially patients on the waiting list who followed her story with hope.... everyone is bitterly sad and feel such heartbreak for her family.
#RIPJennaLowe trended on Twitter today, and facebook is FILLED with condolences from hundreds, if not thousands of people. MANY who said she inspired them to become organ donors. Just watch the video below for a small idea of the scale of sadness that has been present today on social media.
I really hope that her legacy continues, and that her family somehow find peace someday. Maybe one day we will understand why these things happen.
Also listen to this very heart wrenching interview with Jenna's non yesterday on Cape Talk. Extremely touching and honest.
Wanted to share the pics in an early Mother's Day post! Love them! We are having lunch at my sister's house tomorrow, looking forward to it. My mom was 26 when she had me, and 29 when she had my sis. Crazy to think that when she was my age, she had to cope with a 2-year old and a 5-year old with a chronic disease (and bad prognosis at the time). She is probably the strongest woman I know, and the best role-model a girl can have. Growing up she was the perfect mix if caring and scary, and I guess that's what you need to be when raising a rebel-ish child with CF! And not to mention absolutely BEAUTIFUL, hopefully I have inherited her awesome-ageing genes as well!
I've know Kirstie for quite a while via facebook and her blog is featured under my blog list. ... She is lovely and has definitely inspired me from a fitness perspective!!!! And determination!!! The first video below was done recently, and is where she is currently at in life. What a journey..... When she had her first transplant in 2011 Chris and I were actually IN London after the World Transplant Games that took part in Sweden that year! I was soooo excited for her.
Her Chronic Rejection happened during the same time that mine started. Hers just moved a million times faster than mine did :-( I was over the moon when she got her 2nd paid of lungs almost immediately and so soon after being told she cannot be re-transplanted. I remember the devastating post on fb saying that she won;t be eligible for new lungs again.... miracles happen!!!
So last Friday after half a day at work we drove down with my dad to Jansenville for the funeral. We arrived after 20h00, and after a stop at the old age home to see my grandmother we checked into the guesthouse. Our accommodation was really nice and it was great having a comfortable place to stay during such a crazy weekend. Won't mind staying there again next time we drive through there.
Saturday went well I guess. The service was at 11h00, my sis and I did the eulogy. It went well I think, and all in all I think my grandad would've been happy with everything said by everyone who spoke and the number of people who attended.
The burial took place in the scorching Karoo sun (and it wasn't even a hot day!). It was very fitting I think. We just missed my aunt Annelie SO MUCH. She had been visiting them for 2 weeks and went back home to London like 3 days before he passed away. My sis kept her updated with pictures the whole time, and Pierre recorded the service for her, so she was with us in spirit the whole time.
It was great seeing my cousins again at least. Only see them at weddings and funerals it seems :-(. Last time I we saw them was in Nov 2011! Drove home on Sunday after breakfast.
Tomorrow is Gail's memorial service. Wish I could be there. Such an exhausting week, could just sleep for a month.
One of my closest CF friends Gail passed away in the early hours of Friday morning. She was 26, and waiting for lungs. She came up to JHB on the evening of the 23rd of Jan, very sick. She blacked out on the plane on the way here and was in pretty bad shape when I saw her the Sunday. She never left the hosp again and fought off infections as well as bad tummy issues. She also went through the trauma of losing Melissa on the 2nd of Feb.
On Thursday she wasn't immediately responding to our daily chats, and I asked if she was OK. For the first time EVER she said "no". She was SUCH an optimist and and never said that she wasn't fine. I started worrying about her and my last message to her was when I went to bed on Thurs asking if she is breathing any better yet. On Friday morning when I put phone back on I saw she replied "Nope" at 22h30, and upon logging onto Facebook saw that her husband had posted that she had passed away a few hours after replying to me.
Melissa and Gail were my best pre-transplant CF friends, and I chatted to them a LOT. I can't believe both of them are gone in the same month. If only they had also gotten lungs in time. Wish more people were organ donors and wish they were as luckily as I have been. Hate this disgusting disease.
RIP Gail and hope that you and Melissa are together now running freely. My thoughts go out to her loving hubby and the rest of her family :-(
On Tuesday afternoon my Grandad (mother's father) passed away :-( I was at home on my sick leave when the old age home called me. Tomorrow we will be driving down to Jansenville to attend the funeral on Sat (same church where I was christened 30 odd years ago).
My Grandad was a farmer and formidable sportsman. He was passionate about his rugby and played for many years. When he couldn't do that anymore he played tennis. After that it was lawn bowls. Amazing competitive spirit and obviously he always encouraged any sporting activities that I did.
When I was small I used to be scared of him because he seemed so rough and tough, and the way he drove his Isuzu bakkie over loose rocks did not help! I think it helped me prepare future-me for my own driving!
He had a dry sense of humour and sharpness that I appreciated as I got older, and he could say grace before a meal faster than ANYONE ever could. He also told teenage-me that guys like a girl with some meat on her bones when I gained weight (not particularly what I wanted to hear). You couldn't get more honest and down to earth. The last time I spoke to him was exactly a month ago on his birthday... We will miss him a lot.
A few years ago I started chatting to a bubbly and confident girl from Cape Town, also with CF. She needed to go onto the waiting list for lungs but was severely under-weight. I met her in person for the first time just over a year ago and we just clicked immediately. She had a similar thought-process to me (which I think is very pro-active and logical when it comes to medical stuff) and was sooooo positive and strong. She had a peg put in to help her gain weight, which worked very well. When I met her the first time she even brought me 2 gifts... a fridge magnet about kitties and the bookmark below... definitely knew me very well!!!
I saw her for the second time in October last year when we were in Cape Town... less than 4 months ago... we had cocktails at Blue Peter in Tableview. She was doing so well that she didn't have trouble managing without O2 (at the coast). The pic below was taken on that day. I saw her again later last year when she was here for a day at Milpark to see our Dr for check-up and spent the night in hosp.
Yesterday she told me that she was admitted to hosp at 4am, and wasn't feeling well, she had been complaining about struggling to breathe in the heat the whole of last week. She did have bloods done though to make sure it's just the heat and bloods were apparently fine. AND she was just 200g away from her goal weight... she was so excited because it's the most that she has ever weighed, meaning she was ready for transplant! Last night she told me that she was still feeling crappy and needed quite a bit of Oxygen but that her iron was low and she should feel better after that gets sorted. This morning I see on Facebook that she passed away... I don't know why or what happened to cause this but it was SO unexpected and sudden.
I'm so sad about this, and it's even harder because she was READY for those lungs and this was so out of the blue. If I had to sum her up in one word it's DETERMINED. She worked so hard to get ready for transplant, she was so passionate about her job as a teacher and so convinced she would go back to teaching after transplant. Before she stopped working she fought for as long as she could to KEEP working and stay busy. She was someone who took control of her health and did what needed to be done.
RIP Melissa, I will think of you every day when I see my magnet and the bookmark that is hanging on my cupboard door. And whenever I dare to want to complain about something regarding transplant I will remember that she would have given ANYTHING to be post-transplant.
Late 2007 I started reading my first blog. It was called This is my life and I choose to love it. It was the first time I felt really connected to someone who has experienced what I was going through at the time even though she was in the UK. Her positive vibe was contagious and she cheered up many a bad day for me.
29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy. I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.
As you can see she received her lungs exactly a year before I got mine. She also had a little girl 19 months ago via a surrogate mother.... and at the same time received treatment for chronic rejection. She was stable however and all seemed well until she contracted pneumonia in October that lead to respiratory failure and the need for a 2nd transplant. Apparently she did receive lungs again very recently but the transplant was not a success.
Even though I never met her in person, the internet seems a bit emptier and my heart breaks for her husband and baby girl :-( Read this blog post by a fellow CF and twice double lung transplant recipient Kirstie who was very close personal friends with her. Another beautiful blog who definitely does Emily justice is this one by Holly,
I don't think our psychiatrists and psychologists realise the full effect of having fellow transplant/CF friends, with whom you share a special bond and outlook on life, and what happens to us when they pass away. Most likely from the same thing that you will... (rejection or some sort of cancer probably if you are post transplant). It's a mix of sadness and fear and loss and "fuck CF". But you cannot decide NOT to be friends with these amazing human beings because your life would be emptier and definitely lack some purpose. The benefits far outweigh the down-side so it's just a part of transplant life.
Some people have suggested you rather keep your distance and spare yourself heart-ache along the line, but that's pretty much impossible and would also mean other people should rather keep their distance from me for the same reason.
Friday marked the one year anniversary of Nelson Mandela's passing away. A very sad day for the country and all of us. He was such an amazing role man and the type of politician they don't seem to make anymore.
As I'm sure I've mentioned before, my transplant/lung Dr, Dr Williams, treated Mandela for quite a few years before he passed away. On Sunday he received some WELL DESERVED recognition for the job he did by being awarded a Presidential Gold Medal (I think that's what it is called??) I am sooooo proud of him and feel so lucky to have this man in charge of my healthcare! I have met all too many doctors in my life and he is truly one of a kind. WELL DONE PAUL!
I recorded the event with my phone.... so here it is, if you can excuse the cat purring in the background and my phone getting a text message half way through!!!
One of my favourite Afrikaans singers did a tribute video for Madiba, and it's very touching. Do yourself a favour and watch it!
Cornel was the oldest surviving CF transplant recipient in South Africa. She received her transplant in 2002, and I think she might have been the first double lung transplant recipient in this country too? Not 100% sure about that though. I remember when I got listed I had heard of this lady with CF who was like 5 years post transplant and it gave me hope. Over the last 2 years we started chatting on facebook and texting each other. I never got to see her because she lived in Secuda.
However last Sunday she told me she is in Milpark and I went to visit and meet her for the first time. We had a really good time chatting. She was struggling quite a lot to breathe though and it was quite scary to see. She also had a tiredness about her that I can relate to from life pre-transplant but almost on a different level... if that makes sense. But she was so grateful for how awesome her husband is and that she married the best guy in the world, and all the awesome friends and family she has that keeps her going.
Unfortunately on Thursday one of her friends (who I met at the hosp on Sunday) informed me that she is not doing well at all... and on Friday morning I heard that she had passed away. I feel terribly sad for her husband and friends and family :-( But she is breathing easily now.
Just 2 pics from last nights celebration, only attended first part of the evening (being all old and married hahaha) but was great fun and impressive venue... Sandton Sun hotel... almost like Vegas vibes! May you have many more Fawny!!!!
Just realised I haven't blogged about Anna yet! Check out her blog here (I've also added it to my blog-roll). We started communicating via Facebook a few months before the Games, she received her lungs 22 Nov 2010 and also has CF. Was great to meet her in person!! I think we look like siblings! She also brought me some Starbucks coffee from the US and beach sand from California where she's from. Hoping to see her in the flesh in Argentina again in 2015!
Tomorrow is 5 years 7 months with the tantrum-throwing/ diva-like (at the moment) breathers! Hoping the photopheresis will discipline them back to proper lung function!! Oh, and I haven't mentioned that we're going to Swaziland this weekend! (It's a different country surrounded by South Africa) At least then I get to have one stamp in my passport this year!!
Tonight I laid in bed And nothing else
mattered Because I am alive I opened the drawer beside my bed and pulled
out my stethoscope And listened To all that i've been given Safely
enclosed inside my chest Behind a tiny wire Behind a long, clamshell
line Surrounding my heart Two beautiful creatures Kindly entrusted to
me In my careForever LifeGiven and received Taken with
thanks Celebrated in all aspects
So i
listened Inflate Deflate Inflate Pause Not a sound Not a
crackle, or wrinkle Not a wheeze or a pop Nothing sloshing or
gushing SilenceBeautiful silence
Where once i could not blow out a
candle I can now run down the street Where i once could not laugh in the
slightest I laugh long and hard Even though no sound comes out Through
the casing of my stethoscope Can i hear my life Can i see it rise and fall
beneath my eyes Fragile, yet strong Clear From the bottom to the top
and all around Sounding like parchment paper, so thin, yet two little
warriors Keeping me going Keeping me breathing All thanks to the
kindness of another whom I do not know And never will
It is strange to
me that these wonders were not born with me We were not made together But
manufactured apart Yet somehow, someway Our lives became one And you
saved me And will continue to do so
So tonightWhen the world may seem
scary And material things uncertain I listen through my stethoscope And
remind myself In this moment Nothing else matters
My grandfather (on Dad's side) passed away last night. He didn't have a long streched out sickbed, his heart simply started giving trouble on Friday and Tuesday he passed away at home. My gran passed away in October of 2006, and my grandad's has been missing her terribly ever since. I really hope they're together again now!
My grandad really loved my grandmother. They were married for almost 50 years before she passed away. In the 2 months that I worked at his business and stayed with him for 3 nights of the week, he told me their story almost every night. They were such a good example to al of us.
He was also a hard worker. At 84, he still went in to the office every day, and was never retired a day of his life. He got his degree while working after school, and his whole life was a testament of his hard work. What an inspiration!
He was extremely caring. When I struggled to get a job post transplant, he offered me a 3-day a week job in his company, even though they didn't really need me! It gave me a gradual start into the working world and gave me some financial assistance until such time as I got a permanent job. He was definitely also the most compassionate boss I've ever seen!
I'm sad that he's gone and don't quite comprehend yet that we won't be going to visit him in Pretoria again. He was very lonely in the last few years though, and his last remaining sibling passed away about 3 weeks ago too. So in a way I'm glad that's over for him.
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