Wednesday, May 16, 2018

Crazy tummy and brilliant lung function surprise!

Since my last blog post I've pretty much been spending all of my time battling an upset stomach. At first I thought it was a tummy bug. I went for bloods anyway which didn't show anything significant apart from my kidneys battling with the Advagraf (Tacrolimus - anti-rejection med which I've been on for 10.5 years now, at differing doses), which is nothing new... seemingly a little bit more than usual due to dehydration. I saw my Dr on the 4th of May and he gave me a script for stopping the Advagraf and changing to Certican (Everolimus - I was on this for 5 years prior to my second transplant) and Neoral (Cyclosporine). This was very late on a Friday, so I managed to get the new pills by Tuesday, and started it on Wednesday. During this time my stomach situation had worsened quite a bit, so much so that I ended up going to casualty on Wednesday morning, feeling nauseous, unable to vomit (due to my Nissen Funduplication operation) and seriously dehydrated. My kidney function and other levels were way worse, except for my CRP (infection count) which was only 2, confirming that this must be viral.

It was also the day that I'd finally started the Certican and Neoral, so I was hoping the kidneys would start to love me a bit more again finally. Sidebar: it was always the plan to take me off Advagraf at 6 months post transplant and get me back on Certican, as the side effects are just way less for me personally, but because it "prevents healing" you can't take it straight after transplant. This drug was also the reason my drains drained for longer post second transplant, as it was still in my system so those drains were a bit slow to heal. Nevertheless I really like this med... my kidney function is usually normal on this, blood sugar better, I don't tremble the whole time... hair doesn't fall out... (Disclaimer: this is MY experience... don't go running to your Dr wanting to change your meds because I prefer this one).

Back to my digestive problems... none of the meds they gave me in casualty did ANYTHING to make it better. My Dr, who was away on holiday for a few days messaged me to let me know I must go for bloods again on Monday. I saw the Dr again yesterday. Luckily the results were back to "reasonable" compared to the casualty results, so I'm getting better. He thinks it's been a reaction between the Advagraf and the Cellcept (ANOTHER immune suppressant I'm on), which can apparently happen sometimes. I guess being on super high doses of both like me didn't help either. It seems like those extra 4 days that I was still on Advagraf while waiting for the new meds to arrive pushed my stomach over the edge basically. I've lost about 6kg in total in the last 2.5 weeks, which is a lot. Of course then I also get a cold... probably from being weak after 2 weeks of diarrhea! Just great!

So there's the Mauritius trip that's happening on Sunday afternoon... Clearly I can't go if I'm not in pretty good shape. So I'll be going for bloods again on Friday, and until then it's JUST rest and REHYDRATION. Working so hard on this now and drinking gross meds that make me gag for minutes after taking it because it's so gross! Hoping and praying I'm right as rain by Saturday!

The highlight of May so far, and especially of this week, was my lung function test results yesterday. Since my retransplant, and even for a while before that, I've never posted lung function figures anymore, as I've realised some patients almost get obsessed with comparing numbers, when you absolutely cannot compare... They measure lungs that AREN'T yours, essentially, to the predicted value for your age, weight, height etc... so there are SO MANY variables and some people with a personal best lung function of 60% can end up living for over 10 years with those stable figures, whereas I've known people who blew over 100% and died within 2 years. So STABILITY is the key factor, not how high your stats are. That being said... Yesterday all my focus was on my misbehaving tummy, so I didn't put that much thought into the lung function... I just wanted it to be stable, as always. however I was SUPER surprised when it had gone up by 5% in the last 10 DAYS to my record high with these new beauties of FEV1% of 94%! I haven't seen those kinds of numbers since 2012! How insane... and amazing.

Had a great Mother's Day and saw Adriaan quite a bit this past weekend, so that was great. No other news.... just trying to sort this body out for the Island Week of a lifetime!



Tuesday, May 1, 2018

6 Months with the new new lungs, and 2 AMAZING trips in the pipeline.

Can you believe it's been half a year since I became the incredibly blessed owner of these beautiful lungs??? Half a year of no more oxygen, of not worrying about the time left on my portable oxygen's battery. Half a year of no lung infections. No PICC lines for IV antibiotics, not having to keep my phone on 24/7, always WAITING. Half a year of no rejection in my lungs. Of getting stronger. Your personality starts coming back... you're not YOU when you struggle to breathe... "When you struggle to breathe, nothing else matters." Truest quote ever.

The biggest freedom of having your life back is being able to MAKE PLANS and TRAVEL again. It's what I missed most while being on the waiting list, and even before that. The last proper holiday we had was in 2015 when my lung function was 45% on a good day. It was 39% just a few weeks before that trip and I was freaking out. Luckily it bounced back a little again.



This year in contrast, is the YEAR OF TRAVEL!!!!! In 19 days' time Chris and I, along with Andrew, Brendan, Marius, Ditha and Riaan, will be flying to Mauritius!!! (It's an island close to Madagascar, if you didn't know. Very popular with South Africans). The idea originated last year. The deal was that if I get new lungs, we all go to Mauritius!!!! We stuck to it, and on 20 May we'll be flying out! We'll be staying in a resort called Riu Creole, in the South West of the island. (Picture of the resort below). Can't believe it's less than 3 weeks away!





Then, the most amazing trip planned is NEW YORK!!!! That one has been on my bucket list since I knew what a bucket list was! Ever since we watched Friends in high School, I have wanted to go there. Well, in 87 sleeps IT'S HAPPENING!!!! I'm dreaming about it at night already! Busy studying guidebook, starting to plan our days... we will be staying in an AirBNB apartment for 13 nights, and my Vitality Diamond status is FINALLY paying off, giving me a 35% discount on flights! Whoopwoop!



Last week my sis and I went to see The Sound of Music at Monte Casino. It was really great. I wasn't a big fan of the male lead, but the rest of the cast was brilliant.




On Sat morning my sis and I also went to the semi-annual Kamers event, where a lot of jewellery/ clothes/ arts/crafts makers get together in JHB. It was very nice, didn't get as much time there as we wanted to, but it's a blessing for my wallet! On Saturday afternoon Brendan, Marius, Andrew and us drove to Secunda to visit Cecile and Dean! It was very nice catching up with them... Secunda is REALLY not a great town though! Pretty depressing and full of air pollution! But it's always great catching up with Cecile and Dean and baby Ben!





Don't have much planned yet for the rest of the week. Need to get some meds, sort out some follow-up Dr's appointments, and hoping to shake off a tummy bug that I seem to have! Hope you had a great long-weekend!

Friday, April 20, 2018

Two weeks ago in Cape Town!

On the 5th of April I took my first flight in about 3 years! I flew down to Cape Town to surprise my friend Louzanne for her baby shower. I went a bit earlier and also spent 2 nights with my other close friend Ditha! I have a slight lack of girl-friends in Joburg, so seeing two of my favourite ladies was soooo good for the soul. Very glad my Doctor agreed to me flying!!!




I stayed with Ditha and her hubby on the Thursday and Friday nights. They've got a new house in The Strand, which is so perfect and cozy. We walked down to the beach, had our nails done, went to a market on Friday evening where we had supper, and her brother hosted us for a great meal on the Thursday evening.






On the Saturday morning they dropped me off at Louzanne's parents' house where the baby shower was taking place. Louz and I have been friends for about 29 years... I'm so excited about the upcoming baba in their lives, they are going to make the BEST parents ever! It was also great seeing her parents again too, as well as her brother. I took her mom's car to go and fetch her for the shower. It was awesome, she was super surprised to see me!

I stayed with her and Wouter on the Sat night. We had a braai and just caught up on everything. On the Sunday we went to Babylonstoren, a massive farm with huge gardens where they make all sorts of products. We ate brunch at The Glasshouse (the more informal restaurant there)... awesome scones with cream and jam, and some earl grey tea. One of her friends Uli also joined us. Back in 2012 when I visited her in London, Uli was also visiting her, and the 3 of us had an amazing time. So it was great seeing him again too.











Hopefully the drought in CT gets some relief this winter. It's so bad that they have switched off all taps at the airport. You can flush the toilets but then there is only hand sanitiser to clean your hands with, Felt quite gross. Luckily I had disinfectant wipes too, which made my hands feel a bit cleaner. It's also sad seeing the gardens struggling. Louzanne had a beautiful garden but most of the plants have died now :-(. Really quite tragic and alarming.

Thursday, April 12, 2018

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!


Tuesday, April 10, 2018

Coastal Roadtrip Part 3 - Storms River Mouth

The undisputed highlight of our trip!!!! If you're new to this blog... some background: Storms River Mouth is where some of my best childhood memories were made. It's where I went about a year before my first transplant for a day visit, took photo's, and those photo's were inspiration for surviving transplant. I went there 2 months post first transplant with friends for a day hike, which was AWESOME. We went there for our honeymoon, and have been back there several times since. Before this recent trip, Chris and I haven't been there for our "normal" holiday since 2014. At that time my chronic rejection had already set in, and lung function wasn't ideal, but the holiday was still great. We made a quick stop there in 2016 when Anna was here, but I couldn't even walk to the suspension bridge and was on O2 pretty much 24/7. Below pic is me and my sis at Storms circa 1989 or so.


Needless to say, this visit was a milestone for me. Chris and I survived the last few difficult years, I survived another transplant, I can hike and do fun boat rides again, my lungs are amazing again. Our life is not spend WAITING anymore. We can just BE and enjoy life.





The one day we did the full Blue Duiker Trial and more... and I climbed the equivalent of 100 flight of stairs! I was sooooo proud of the lungs! My left knee and right calf muscle suffered for it, but that's their problem LOL!






We also did a trip on boat into the sea, as well as up the Storms River. It was SO MUCH FUN! Especially the sea part. You shoot up into the air with every wave, and really use your legs when crashing down again. It almost feels like flying, with the wind in your hair, the sea's spray in your face, and doing a lot of air-time with the rubber-duck. The most fun I've had with the latest lungs so far. I'm a super lucky and fortunate girl right now, and I really hope my donor is able to look down on me and see what he/she has given me. I have my life back (again). Overflowing with gratefulness.