Bye bye 2018, Hello 2019

We're into the last 4 hours of 2018... Apart from the last 2 months, it's been a pretty great year for the most part. My 2018 New Years Resolutions were as follows:

• Take part in the National Transplant Games in PE in July (and hopefully go on to qualify for the 2019 WTG). DONE! And I qualified for squash... but then I tore the Achilles twice and now that dream is down the drain.
• Travel as much as I can, including at least one overseas trip. DONE! Did 2 overseas trips and a few local ones.
• Take my fitness above where it was at it's peak after my previous transplant. The years of rejection has made me value the capabilities of these lungs and what my body can do (given enough lung-power and training), even more. DONE! But at the peak of my fitness I tore the Achilles and now I'm back to being unfit with MONTHS of recovery laying ahead.
• Figure our working/ LLGL/ my life and priorities. DONE. More about the LLGL part a bit later, but yes, everything is sorted out now.

So I managed to achieve everything I wanted to.... technically. I'll figure out some new ones for 2019 soon. 

The highlights were definitely the holidays we took. Ballito, Eastern Cape, Mauritius, New York City, Two brief Cape Town Trips.

Starting to work for my friend Andrew has also been a highlight... the perfect job for me in so many ways. Seeing my nephew Adriaan grow a year older was also amazing. 

Another highlight was the fact that I had NO LUNG PROBLEMS the entire year. I had a bad reaction to two of my medications in May, and the Achilles drama recently, but no lung drama. And today marks 14 months with the new new lungs. So that's undoubtedly a highlight.

Fawn, Bonnie and I got to launch our new organ donation NPO called TELL, and we had a fantastic launch function. I believe we have the potential to achieve fantastic things, and I love working with everyone involved.

The lows... Pretty much right now. I've been sitting with my leg up for the last 2 weeks and I'm pretty damn frustrated. I'm going to end up having spent 3 months in a cast. I'm pretty depressed about not being able to play squash again, and I don't know how well these injuries will even recover to allow me to at least jog a bit again. My google searches have said about 6 months to be able to WALK normally again, and a year to recover "in full"... although it never FULLY recovers. I can however start swimming and some cycling sooner. But basically my tendons are clearly weak and I will need to take that into consideration forever. (I also need to have my bone density checked again early in the new year, because all I need now is to break a bone as well... courtesy of the lovely steroids too. 

The other low was the demise of Love Life; Gift Life, and the terrible conflicts that came with it. I've never experienced anything like it, and I still think about it with sadness, bitterness and disbelief. It's not even over yet, as the NPO is not legally dissolved yet, so undoubtedly even more crap awaits. I CANNOT WAIT for it to be over for good. And to focus all of that energy on TELL.

So that was the year in a nutshell. Spending New Years eve doing nothing, because it's too much effort to go out and I won't enjoy it. Hope you have a great 2019.

Terrible week and setback (longish post!)

So last week Friday I had the cast removed after my Achilles tendon repair on 1 November. It went well, and the surgeon was really happy with how the wound had healed. The next step was to wear a shoe with a heel for 6 weeks, in combination with physio, to stretch the tendon out again so that I am able to put my foot flat. My foot was in a toe-pointing position in the cast, so I was unable to put the foot flat. I took some sample shoes with to the Dr, so that he could SELECT which shoe he thinks is best, and he chose my wedges. I'm specifically mentioning this, because I've had many "why were you wearing those shoes?!" questions!

I had to make a stop at my lung dr too, as he had to decide whether he was happy to let me return to my usual anti-rejection meds combo. (I had to stop taking Certican and increase Neoral in order to assist the healing of the tendon). He said that he wasn't quite comfortable doing that yet, so I stayed on the high Neoral dose. (In hindsight - thank goodness)

I had a very nice weekend, visiting Fawn on Sat, and on Sunday Brendan and Marius had a Christmas Pool Party at their place which was so much fun. It was AMAZING to have my leg "free" again, even though it was so thin! And putting it in the pool was like heaven, after the weeks of itching. On Monday morning I went over to my parents' place to visit them and my nephew. I was walking towards their patio door along the side of the house, which has some uneven surfaces, carrying my handbag, a magazine, some biscuits and a toy, when my mom came out and told me Adriaan was sleeping. As she spoke I looked up, and stepped funny with my left leg... and fell....

I felt immense pain, and completely collapsed into the plants. My dad came to pick me up, and got me on to a chair. Blood was gushing out from underneath the bandages on my wound :-( My parents managed to stop the bleeding, and my dad took me to casualty. Luckily they live extremely close to the hospital. When they took the bandages off in casualty we could see that my ankle had actually split open horizontally (so NOT along the scar), and there were pieces of tendon actually sticking out. Quite a gross picture. Luckily the surgeon who did my tendon repair was on call, and emergency surgery for the same day was booked.

Surgery was much less pleasant than the previous time. The spinal block was EXTREMELY painful, I don't know what went wrong there. Drip access was an issue, and I came out looking like I'd been in a fight with someone. I actually just couldn't stop crying at my bad luck, the pain, the way my day turned out, and what this new injury meant for my future. The verdict was that the Achilles tendon HAD snapped again, but in a different spot than the previous time. So the 1 Nov repair was still in tact. It had now snapped way lower down, almost at the bone, and they had to use artificial tendon to repair it. Because of the infection risk due to the open wound I had, I also had to stay in hospital for a few days on IV antibiotics to make sure that I don't get an infection. There was also a drain in my foot this time. I was in hospital for 4 nights, and came out yesterday. Thankfully no infection emerged, and my bloods were looking great the whole time. My veins however are shot from the drip attempts and the daily blood draws. And 34 years of needles in general. Yesterday morning they had to draw blood from a small vein in my wrist, and it was more painful than any blood-draw I'd ever had.

The only positive thing from this whole hospital admission was that my lungs are just superstars. The anesthetist made a comment after the surgery that it went really well and that "you are really fit". In theatre my O2 sats were 100% and 99% the entire time that I was awake. In the ward they were consistently 98%. It was quite strange being admitted for something that had absolutely no lung involvement.

What this means though is that I cannot play squash anymore, as it is just too risky for me (assuming these injuries even heal fully). 27 Years of prednisone use has taken it's toll on my body. These days they don't treat CF patients with permanent steroids, but in the 80's and 90's it was the thing to do... in PE anyways. Since the age of 7 I've ALWAYS been on differing doses of it. And post transplant it's used as an anti-rejection medication, albeit at a MUCH lower dosage at least. Like my Dr jokingly put it, "my" lungs are out-living my body. Back in 1990 when they started me on Prednisone they were hoping I survive the year. Nevermind the next 27 years. And it if weren't for my 2 donors I wouldn't have lasted this long. The bottom line is, I need to find a new sport (currently I'm thinking swimming!!! And carry on with spinning in the gym). Also, the 2019 World Transplant Games is out of the question. I'm extremely sad about it. I worked so hard to regain fitness after my second transplant, getting squash coaching, qualifying at Nationals, re-qualifying in October... It feels like such a waste now.

So I'm back in the cast for 6 weeks. 2 Weeks of keeping the foot up for as much as possible. Then I can start walking on the cast again. I've told the surgeon that I'm not comfortable with wearing heels after the cast comes off again, and he mentioned the option of a brace. So I will be seeing him again on the 18th of January to organise the brace. At this point I'm just hoping it will recover as much as possible. It will never fully recovery from this. I just want to be able to walk normally again :-( We have a holiday planned for March, and I'm not expecting to be able to hike or anything, but if I could just walk a medium distance at ease... that would be great. Sigh.

Below are some pics of this weekend's xmas pool party when my leg was free...

Current employment, disability, weekend in Cape Town, Achilles situation

Some news on the working front: I am officially not on my previous company's disability payroll anymore. The most recent reports by my Dr indicated that I'm fit enough to return to work. However... having received a THIRD chance at life, and spending the last 2.5 years of being on disability reflecting on what a balanced life means for me, the consequences that stress has had on my health, and the important things in life... I decided not to return to the corporate rat race.

Instead, I will be working for my life-long friend Andrew. We've known each other since Grade 1, we studied together, but he obviously completed his honours degree and became a Chartered Accountant, unlike me. He also stood by me through 2 lung transplants. He has for the past 3 years been working as an interior decorator, leaving his corporate job to start his own business. He was a finalist for the "Top 35 under 35" CA's recently. I'm officially assisting him with accounting work now. Whoop whoop! I couldn't have asked for a more perfect set-up. The hours are flexible, I have time for decent exercise and sleep, life admin, managing TELL, and Drs appointments. I feel like a productive member of society again! I'm also very lucky to have a supportive husband!!!! So excited for 2019!

Last weekend I was in Cape Town for a few days to meet my very close friend Louzanne's baby girl Olivia! She is 6 months old now, and I don't know when I'll be in Cape Town again, so I made an impromptu decision a few days before I tore the Achilles tendon to go down for a long weekend. I was worried that I'd have to cancel the trip when the Achilles tore, like I had to do with 2 other small trips, but lucky the surgeon was happy for me to go. It was super awesome. I also got to see 2 other friends, Ditha and Carmen, who stay close to Louzanne. There are SO MANY people I'd love to see in Cape Town, but I need a proper period of time there! So it was just was just a short visit to meet the baba. In terms of "touristy" stuff, we managed to have the most amazing high tea at the Mount Nelson Hotel, as well as visit the Zeitz MOCAA art gallery in the waterfront. And of course had some lunches in the vineyards. It was amazing.

Only 5 more sleeps until the cast on my leg comes off!!!! I really cannot wait. The last 2 weeks have been SUPER hot. It's been in the mid-30's (Celsius) almost every day. So my leg in the cast has been unhappy, itchy, sweaty... Friday can not come soon enough! Then the slow process of rehabilitation really starts. I'll be wearing heels for 6 weeks, to aid the repaired tendon. I also need to find out exactly what I may and may not do, to ensure that it heals as well as possible. Being immune suppressed means that technically it will take longer to heal than for a normal person. (I say technically, because previous wounds of mine have healed very well, and in a timely manner, while a cold takes AGES to get over!)

That's all from my side... hope you're getting into the holiday spirit too!

The lungaversary party, the Achilles and the radio interview

On Saturday evening the 10th of Nov, my parents hosted us and a couple of friends for a 1 year lungaversary party! It would have been more fun and I would have felt less useless if I weren't on the crutches, but it was still great!

The following Tuesday I was on Jacaranda FM, a local radio station, to talk about CF and transplant. I was on the show for the whole hour, talking on and off... but they put the first bit on their website... if you'd like to have a listen!

I also had an Achilles check-up on Friday. I can now walk crutch-free! I'm wearing this sandal thing, with two heels on the inside, and it's allowing me to put weight on the foot. This "pointed toe" position doesn't put strain on the tendon. On the 14th of December my cast will come off, whoop whoop! Then I have to wear high heels for another 6 weeks and start with physio. I was able to return to bio last week, which was GREAT. I'm trying to strengthen my left thigh, as it's already lost quite a lot of muscle. It's just great to be doing some sort of workout again.

I also asked to do a lung function test while I was at the hospital on Friday, because I had been feeling a bit anxious. My new medication (cyclosporin) levels are STILL too low, and has been adjusted for the 3rd time in as many weeks now. Normally when a bout of anxiety hits me I fix it by doing cardio.... I always feel relaxed and comforted again after a short run or spinning class. Now I can't do that :-( So I did a lung function test and luckily all was good. Phew! By the time the cast comes off I should also be able to switch back to my normal anti-rejection regime, which is a fifth of the cyclosporin I take now, plus Everolimus (Certican). Looking forward to that! And to slowly increasing my physical activity. It's been amazing to be able to do some stuff around the house again for the last 2-3 days. Some freedom!