Thursday, May 31, 2018

Mauritius Part 2

The Wednesday and Thursday we spent mainly on the beach or by the pool. Our resort, Riu Creole, was where I marked it with the red arrow below. We were exposed to quite a lot of wind, but when we walked around the corner towards the west, there was absolutely NO wind. The water was also eerily calm, so we snorkeled again! We had 2 snorkels between the 7 or us, so we took turns to go out. It was really amazing yet again. You can not imagine a more perfect beach.

By the way, how cool is the underwater waterfall illusion???

We had some great times on "our" beach too, and Andrew's underwater camera was a total hit. Apparently I suck at keeping my eyes open under the water!

The only other thing we did on those two days, apart from eating, sleeping and chilling on the beach, was chilling in a relaxation pool at the spa! It's a tough life but someone has to do it :-p

Wednesday, May 30, 2018

Mauritius Part 1!

So my body sort of cooperated and my Dr gave the go-ahead for Mauritius!!! I was still struggling with my tummy a bit and battling some sinus pain/issues, but off we went! It's a pretty short flight and we had the wind from behind, so it took just over 3 hours to get there. We finally arrived at our resort just before 10pm on the Sunday night, just in time to grab some food from the buffet before closing time. Mauritius is 2 hours ahead of SA.

On Monday morning we were able to see our surroundings and take it all in. Below was the first sight that met us as we looked out of our room! It was so strange to be so close to the beach but not HEAR the sea! There was a reef/lagoon for the first 100m or so, and the waves only broke after that, way in the distance.

We overslept and missed breakfast on the first day! So we chilled on the beach and waited for lunchtime! After that we all took a nap again and explored the surroundings a bit as well as booking two excursions for the week. On Tuesday we had our first of these, which was going up the west coast a bit in a speed boat for half the day. It was AMAZING and definitely the highlight of the trip. We saw dolphins and everyone (except me) got to swim with them! (Initially I was scared of jumping into the sea with the snorkeling gear as I've never snorkeled before and I'm not a strong swimmer, plus the water was about 30 metres deep, and I think I have a fear of drowning in deep water! After the first dolphin experience was had, I decided "screw it" and tried as well. The dolphins are wild, so our guide does his best to tell you when the dolphins are coming in our direction, so that we're ready for them. They swim by really fast, but if you look down with the snorkeling gear you just see DOLPHINS all the way down apparently. Unfortunately I never got to see them IN the water, but got some amazing views from the boat.

After the dolphin viewing, our guide took us to a coral reef for snorkeling. The water was insanely crystal clear, warm, and not too deep, so I was IN! My first snorkeling experience ever! Some people complain about feeling claustrophobic with regards to the breathing when snorkeling, so I was prepared for that, but I found it perfectly fine! What a whole different world down there???? It was breathtaking, the pictures don't do it justice. And the swimming didn't tire me out at all, as it's a lot of floating anyway. Best experience ever!

After that he showed us some more iconic sights (will do a whole separate photo post of pics I took with my camera as opposed to my phone! Then we headed back hungry and tired!

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!