Thursday, June 25, 2015

Last 2 weeks of travel prep (and 89 months)

Monday marked yet another month survived with the new lungies! Happy 89 months to us! Next one will be in the USA with Anna celebrating her 56 months on the same day as my 90 months! Not sure if I've mentioned before, but Anna also has chronic rejection. She had a very good check-up on Monday though, and her lung function was stable from the previous time (at 85%). So that's great news for her, it means she doesn't have to worry about starting Photopheresis yet for now. As you know my last check-up also went great, so everything is working out perfectly for our holiday. I think our donors met up in heaven and made this happen for us! We owe those two angels soooooooo much and hopefully they will smile down on us :-)



Our guest bedroom is now officially PACKING ROOM. Tonight in 2 weeks' time is our last eve at home!!! We also have THIS trip to Alcatraz booked. Excitement!!!!

This week has been rather stressful. Had massive fights with my pharmacy, Discovery's MedExpress..... I placed my order for meds on 10 June, and as per usual they promised me delivery within 3-5 working days. When my delivery arrived on the 18th (already late), I saw that only 3 of the 11 items ordered was there... Turns out they LOST the other part of the order, even though my co-payment of about R500.00 went off my bank account without any difficulty. WHAT THE HELL... So they re-captured the order on Friday, promising delivery on Monday. By mid-day on Monday I still had nothing. After ranting on Twitter, I was promised that they would call me back. Nothing happened. Called then again and lost my shit... shouted at the guy at the other end and asked if he knew what anti-rejection meds are.... he said no. I subsequently and in no uncertain terms made sure him and everyone around me at the office know that I HAD AN ORGAN TRANSPLANT, AND IF I DON'T TAKE THESE MEDS MY BODY REJECTS MY LUNGS, I CANNOT BREATHE AND I WILL DIE. He called back about 4 times after that asking if I had my meds yet, They were there within 30 mins. He called back again the next day to ask if all the meds were there and if everything is fine now. At least I have done all the maths, and I now have enough of all my essential meds to last me the entire trip. I am supposed to have another order delivered before then, but at least I know that even if that fails, I'm still fine.

Went to gym on Tuesday at least, was supposed to go today as well, but have been feeling a bit light-headed for the last day or two. Decided to rather go for my Vitality check-up (they check basic health stuff, and you get points for the results) where my blood pressure would be checked at the same time, as I thought maybe the vertigo feeling was low BP, but all was fine. BP was 125/83, glucose was 5.5, BMI 21.9, and I am HIV negative! So all good. Hopefully tomorrow the weird sensation is gone.

Bed time, flipping tired!

Sunday, June 21, 2015

Fathers Day and ODF Volunteering

Happy Father's Day to my dad!!!!! We had a great braai at our place, nice sunny weather, yummy food and great family. So fortunate to have a dad like him xxx Love this old photo below and thought we did quite a good follow-up today!



So Tuesday we drove to Potch and spent the day with Louz and her fam. Awesome day, can't think of a better way to spend a public holiday! The rest of the week was BUSY at work. Went to gym on Wednesday, had hair cut and coloured on Thursday and went to visit Charlene on Friday after work. She is doing SOOOO WELL , her last drain was removed today and she will probably go home tomorrow or Tuesday, 

Yesterday I spent most of the day at the Organ Donor Foundation's first Volunteer Training Day. Was very informative in terms of ideas shared and people met (knew all the organ donation facts already) and in terms of plans the ODF have going forward.

15 days of work left before our trip!!! Starting to get sooo excited. Meds still need to be sorted out, need to get a Dr's letter for all the meds I will be carrying with me on the plane. Need to book our seats, lots still have to happen at work, oral hygienist on Sat, other admin stuff I need to catch up on.... eeekkkkk. On the plus side, I don't mind tomorrow being Monday, because it's another Monday closer to 10 Jul!!!!! And tomorrow is 89 monthses with new lungies. 90 Months will be celebrated with Anna!!!!


Tuesday, June 16, 2015

Food yummy food and gym/lung antics

Our weekend was pretty nice and PRODUCTIVE. FINALLY took all the cats to the vet to get their annual shots and even some de-worming meds thrown in there for good measure (not that they have worms or fleas or ANYTHING.... super clean kitties..... #justsaying).

Also bought a lot of the items we need for our trip, like foood requests from Anna and Casey, cat food in BULK, hand sanitisers, toiletries....Not much left to buy now! And yay for pay-day this coming weekend :-/

Also, had very much of a foodie weekend.... Made prawns for the first time with my sis (from scratch)!! Was a bit nervous but it came out DELICIOUSLY. Then in the evening the boys made us Taco's, which were also devine, and on Sunday morning Chris made french toast and bacon with Maple syrup. Mouth watering just from seeing these pics again! Plus last night I had sushi which was AMAZING too..... I love food.




With regards to the gym thing.... I went to gym twice this weekend... and my lungs really feel better than they have in MANY months. I don't need to catch my breath after EVERY set of weights etc that I do. And I can climb the billion stairs to the entrance of the gym without feeling like I might seriously pass out like before. Very strange, but GREAT obviously. Going to try and go more regularly again to build some more muscle. and that should be easier seeing as it's less depressing to drag my ass there! Very curious to see what lung function is after USA trip when I go for that again.

Today is a public holiday, and we're going to Potch for the day (smallish town about an hour and a half away) where bestie Louzanne (whose BRIDESMAID I will be in December!!!!!!) and her fiance are visiting her parents at the moment. Very excited to see them!

Thursday, June 11, 2015

California Countdown.... ONE MONTH TO GO

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!!!!


Tuesday, June 9, 2015

RIP Jenna

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.

Saturday, June 6, 2015

Lungies GOT THE MEMO!!!!! Finally!

So Thursday was my lung check-up. The last one was 11 May when I was sick. Then FEV1 was 38% (I felt so crappy at the time that 38% seemed too high for me) and volume was 83% (also lowest it's ever been.). Bloods also showed infection and I had a temperature then. I was put on an oral antibiotic called Avalon for 2 weeks, higher dose of prednisone for a few days and my Dr gave me 2 inhalers to use, Foxair and Forvent. I've used Foxair previously when I was having the photopheresis treatment, but it made no difference so I asked if I can stop it, as it was hurting my tongue, costing me money, and seemed to be a waste of time.



However my Dr decided to try it again in combination with the Forvent (which is a capsule filled with powder that you manually insert into the inhaler and puncture it to inhale the powder). When I asked why, as the Foxair did nothing last time, he just said "humour me" :-) Got to love him and his scientific explanations :-p (don't think he will read this LOL)

My lungs have definitely been feeling way better since then, but I didn't expect much from the lung function, as the numbers don't always reflect how I FEEL. So when I got 46% FEV1 on the first blow, I was really blown away... (OK bad pun). Didn't even try again (sometimes I try up to 3 times). Volume was 94%, also 11% up. That's about where I was last year when Anna and Casey came to visit in Cape Town. (coincidence.....??? I think not). Needless to say, Dr was very happy. Bloods were all great too. Increase in lung function could possible be due to the inhalers, but we won't know for sure. I'm just going to carry on with them obviously. Weight same at 56kg. Resting O2 sats were 94%, which is fine, but they dropped to 85% after the 6 min power-walk test. That's the same as when I was sick. It jumps up back to normal really fast though, so no-one seems too worried about it.

Needless to say, the week was BUSY, with month-end, and going to the hosp twice after work, once for the bloods and next day for the check-up. Of course both of these also carry with them a certain amount of STRESS, and I can feel it!!!! SOOOOO TIRED right now, could literally not keep eyes open last night and pretty much today as well. Hoping I feel better tomorrow because I'm going to need some energy for next week again! Monday is dentist (scared as shit) and Wednesday is mom's birthday! Did some shopping today and had tea with mom and sis at Vovo Telo, so it's been a good day. Tomorrow is Fawny and Sasha's combined birthday lunch, which is going to be AWESOME.



Charlene (who got her lungs last week Tuesday) is doing GREAT! She is out of ICU and I will be visiting her very soon!!!! Can't wait to see her all pink-ed up!

PS.... some lung terminology explanation.... FEV1 is the amount of air that you can blow out in one second. So one could almost say it's you lung "power". FVC or volume is how much air goes into your lungs. With my old CF lungs both of these were pretty low in the end. However the chronic rejection I have now is completely different, as it causes obstruction in the small airways... so my total lung volume is not down by that much (best ever was 113% I think, so in total it was dropped about 20%, but is still good at 94% or even in the 80's). However, my FEV1 has dropped from 103%, so the amount of power my lungs have has dropped by more than half. That's why I get short of breath more than I used to and feel like I have less energy in general.

Monday, June 1, 2015

Organ Donation Adds that give you goosebumps...

If you watch these advertisements ans STILL don't want to be an organ donor, then there is something wrong with you, seriously...

This one has taken the internet by storm in the last week...


The one below was locally made, and won awards... still one of the best


Something a bit lighter...


Very very realistic one...


Sunday, May 31, 2015

Cecile and Dean wedding pics

What an amazing wedding!!! The weather played along, it was just magical. So happy for this awesome couple. Fantastic evening.





















Friday, May 29, 2015

Break-in, Charlene's transplant and 6 weeks to go!

So as mentioned in my last post, we had a break-in in the early hours of Monday morning. We were woken up at 2am by the sound of breaking glass. Chris looked out the window and saw a guy wearing a red balaclava jumping over our wall and run down the alley behind our complex. We called the police and went downstairs with the Police still on the line. At first we saw nothing out of place, so we told the Police all is fine and that we can't see anything wrong. Then we went into the dining room (that we always lock because the cats ruin the chairs in there and they can open doors) and saw broken glass everywhere and Chris's laptop gone....

We called the Police again and they were there pretty fast. The guy kicked in one of the bottom window panes, grabbed the laptop and ran. It all happened within seconds. I went back to bed with 3 scared kitties while Chris did all the official stuff with the Police. We didn't really manage to sleep again, which is a bummer as I JUST felt rested and had some energy again after being sick. So Monday was pretty tough in the staying awake department! The whole week basically consisted of getting insurance claims done, replacing the window and having electric fencing for the front wall of our complex organised. Luckily we aren't scared now and didn't having trouble sleeping again or anything since then, but we have learnt our lesson about leaving laptops downstairs! We make a point of taking my laptop upstairs with us at night (there is a security gate at the bottom of the stairs)... we did it before but we weren't as good with it as we will be now!

I have taken up a new hobby recently.... crocheting!!! I really love it and it will keep me occupied in the future when lungs are unhappy being too active. This one below was my second attempt (first attempt to be revealed later), it's for my sister for her birthday (which is on July.... I was really excited about it clearly!). So all friends and family should expect blankets from now on LOL :-p


Some super exciting and amazing news.... my CF friend Charlene got lungs on Tuesday!!!! She is doing really well so far, and was extubated after less than 48 hours post surgery. It is just SUCH AMAZING timing, as she was telling me on Monday that she is REALLY struggling, with a lung function of 16%, and didn't know how much longer she would be able to cope. I was SSSOOOOO HAPPY when I woke up on Tuesday morning and saw the news. Praying all continues to go well!

Please also send prayers and positive thoughts for Jenna, who had her transplant in December and is still in hospital. She has had unimaginable complications and her survival spirit is soooooo strong. I would NEVER survive almost 6 months of being in hospital and all the emotions connected to the ups and downs they have experienced. What a brave girl and strong family.


Today is officially 6 weeks before we leave for our trip!!!! Very very excited. Also slightly nervous as a few sick people at work.... hopefully my flu shot will do it's job. Next week is month-end again at work, but I'm excited for every week that passes now as it's one week closer to 10 July!!! Also aiming to get to gym on Sunday, and tomorrow we're going to a wedding that is going to be AWESOME at Hartebeespoortdam. Tonight supper with the parentals.

Have a good weekend!!!

Monday, May 25, 2015

Happy birthday Louz!!!!

Happy birthday to one of my besties Louzanne!!!!! Wish I could be in Stellenbosch today to celebrate!!! She is also newly engaged so very excited for the wedding!!! Hoop jou jaar is fantasties en jy verdien alle geluk wat jou kant toe kom xxx Love jou!!!!


Had a great relaxing weekend. Did domestic stuffs, slept late, did a little bit of shopping, and went out for Indian food on Sat eve with Chrislie and Pierre. It was AMAZING, the best Indian food I've ever tasted in my life. The place is called Ghazal in Sunninghill. I would definitely recommend it! Ate so much I couldn't breathe, had to lie down when we got home, but WORTH IT.





One of my fellow bloggers, and the best one I know at that, Piper, posted this post yesterday... If you want an interesting read on re-transplantation go read it!!!

ALSO, they broke into our house last night and stole Chris's laptop, but that's a story for a different post!

Thursday, May 21, 2015

88 monthses!

Tomorrow it's been 88 months of togetherness for me and the new lungs. Thank you lungies for being awesome and I'm sorry my immune system is an asshole :-(


Have survived first week back (so far) after being sick. Lungs feeling good, just feel like I am so tired still and need like a month of sleep! Hopefully after this weekend that will be better. Next week I will brave the gym again and slowly start getting "fit" again.

Saw the ENT for another sinus check-up yesterday. Feeling sooooo frustrated because after a sinus x-ray, sinus CT, nasal swab that showed infection, and 3 ENT visits it turns out I just need take pain meds, carry on using the nasal spray and sinus rinse and hope for the best. Sinus issues are a part of having CF, but it's never really bothered me like it has recently. I don't take pain meds for "bearable" pain, as I feel my poor kidneys have enough to deal with, so I try to stick to "necessary" meds (ie pic below). I'm just venting though, so please don't give me more sinus advise :-p

By the way, see here for an exciting new drug treating MY mutation of CF! (too late for me as old lungs are long gone, but it's awesome!). I have Facebook CF friends who were part of the trials and they are all very positive about it.


Tomorrow also marks 7 weeks to go to our trip!!!! We have collected out Visa's this week so that's all sorted. Excitement!!!!