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...

1 Week post Op

It's been a week since my surgery. Two weeks ago was the last time I was able to walk. Surgery went well. The spinal block wasn't too bad, the sedation was probably not as effective as it should have been... I'm pretty immune to Dormicum etc by now, so I remember chatting a lot... asking the surgeon if I was take a look at what he's doing, talking to the anesthetist about the world transplant games, asking if my right leg is in the air (???)... pretty much like being drunk.

When the spinal block wore off the pain was rather intense. And I left it a bit too long before asking for pain meds... rookie mistake. I spent Thurday night in hospital and was sent home on Friday. Since then I've spent most of my time with my leg up. The pain is better now. Still can't put any weight on it though and fully reliant on the crutches. Seeing the surgeon again on the 16th.

I'm feeling pretty upset in terms of what this means for the World Transplant Games in Aug next year. I've officially qualified as part of the SA Team now, which was not an easy process. The surgeon said I shouldn't give up hope for the Games yet... but other people are suggesting I should. And that I rather never play squash again. I'm also hating being useless like this. I can't even carry a glass of water. Even when I was on oxygen, I wasn't THIS dependent on others. And of course spending this much time on the couch reminds me of when I couldn't breathe. Yes I know things could be much worse, and I am super thankful that my lungs are doing well, but this has really bummed me out. I'm also worried about the change in anti-rejection meds for this surgery. My kidney function was already a bit worse after 5 days on the high dose of Neoral, and I'm just hoping the lungs are happy with it.

On a different note, I took part in a "scar" photoshoot in April. It was quite fun, and the final product has been revealed. Here is my picture, and please check out the photographer's blog post on it!

Wish me luck on this massive recovery process. And patience.... my WORST virtue.

11 sleeps till my 1 year lungaversary with the second lungs!

How has it been 18 days since I've blogged??? Excuse the cliche, but time flies when you're having fun. In 11 days' time I'm celebrating a proper lungaversary for the first time in almost 2 years. My last "proper" lung anniversary was my 9 year one in Jan 2017. Two months before I was supposed to celebrate 10 years, I got the new lungs! So I'm super excited. I have a whole bunch of awesome stuff planned for the day!

Life's been busy and awesome. Two weekends ago we had a great Sunday afternoon pool party at Brendan and Marius' house. We always have the best times there!!!

Obviously I've also seen the favourite nephew a bit as well:

The biggest news is that on Tuesday we had the official launch function of our new NPO TELL. We organised the whole thing in 2 weeks.... and it turned out so well, despite some sleepless nights! The food (sponsored by the amazing Pippa's Food... this woman is amazing!) was delicious, the vibe amazing, the speakers great, a good turnout... we felt so blessed and special and excited! We have such great support and people have been awesome. Very relieved that this event is over though! Next week should be a bit more chilled!

It's also Jacaranda season... last year I kind of missed it... they were late in blooming, and when they did, I was in hospital recovering from the transplant. They're BEAUTIFUL right now. I went for sundowners with Andrew and two of his friends at the Westcliff Four Seasons Hotel yesterday - just for the views! We were NOT disappointed!

That's all for now... the other big thing that I need to do before the end of October is to re-qualify for the World Transplant Games next year. I've been having squash coaching sessions... this past week it was squash on Monday, bio Tuesday, squash on Wednesday and bio again Thursday. Working on my fitness! Yesterday and today I did nothing (well today I walked quite a bit in the mall but that doesn't really count). Tomorrow I'll go and hit some balls at the gym again as well as gym a bit. Loving it!

It's October!!!! Health and other updates.

So September just flew past!!! And October promises to be even more busy! Some random updates and stuff that happened in Sept below...

I joined a squash club. In order to re-qualify for the World Transplant Games next year, I have to be scored on certain criteria by a qualified person, as well as join a club. So I'm busy working on that. I'm playing a game tomorrow morning against a coach who will assess my level of playing. Quite nervous! And before that I'm off to the dentist for a tooth that I hurt by biting on a hard sweet... I think I messed up an old filling.

Spring is here (and in Joburg that basically means summer is here... we don't have much of spring. It's winter and then summer.), so I've re-potted some of my pot-plants. I'm not done yet, but the plants are a bit more organised now. I have a very clear pot-pant addiction!

Chris has a work function with a 1920's Gatsby theme, so that was fun to dress up for:

I attended another fancy event, at the same venue actually! My good friend-since-forever Andrew was a finalist in the "Top 35 under 35" Chartered Accountant awards. It was such an uplifting function to attend (while at the same time making you feel like SUCH an under-achiever!!!). Very proud of him!

I've also been able to spend some quality time with my nephew this past weekend... love him SO MUCH!!!!

Then LASTLY, two days ago was basically my 11 month lungaversary! (Sept doesn't have 31 days...). Despite having a cold two weekends ago, I'm doing SO WELL! Had a Dr's check up yesterday. In summary:

• kidneys are the best they've been since re-transplant. Creatinine was 116, the lowest it's been in almost a year. Thanks to stopping the Advagraf and switching to Neoral and Certican, whoop whoop! (normal levels are under 90 for women and under 110 for men, according to Dr Google, so my kidneys are ALMOST like those of a normal man!)
• liver numbers and heamoglobin was normal... previously these were issues. Dr commented that I'm doing something right.
• FEV1 was up! (at first the machine said it was down, but then Dr realised the predicted values had changed incorrectly - the machine was moved and re-calibrated- so I don't know what the % value is but it doesn't really matter.
• long-acting insulin has been switched to night-time, as I've been having some low blood sugars in the mornings... this might help.
• Dr said "You have big lungs"... as someone who is on lung 5 and 6 in my lifetime, this feels like a compliment. I LOVE big lungs... filled with AIR (that is not trapped, LOL)!
• x-ray looked great.

Needless to say I'm super happy and blessed. I will never take a single second of this good health for granted. I can safely say "you REALLY appreciate the value of easy breathing when you've lost it twice!". 

National Transplant Games

A week ago I flew down to Port Elizabeth, my hometown, for the National Games. The highlight of the Games was undoubtedly seeing everyone again! I've been involved with Transplant Sport for 10 years this year (for which I was awarded Life Membership... see one of the pics below), and that makes you a part of the Transplant Sport Family. A family that shares in the triumphs and losses of the athletes and their families. I was very sad to miss the last National Games, especially as it was held in Joburg. 

We stayed in the Marine Protea Hotel... which is where my parents AND Chris and I had our wedding receptions (almost 3 decades apart obviously). When I was growing up we often ate at the buffet there for very special occasions. So I have very fond memories of that hotel. The first night in PE I spent with my friend since Primary School, Antoinette. We chatted and tied business cards to heart shaped lollipops for the Love Life; Gift Life awareness stand at Friday's Beach Walk, until the early hours of the morning. The Thursday eve was comprised of the Welcome and AGM, and reconnecting with everyone. I shared a room with a lovely lady from Pretoria!

On Friday it was squash.... 12 whole games of it! The altitude DEFINITELY helped me a lot, I would never have been able to play 12 games in such quick succession here in JHB. Some of the games were over quickly, but it still involved a lot of running.  All in all it was fantastic. I loved every second of it.

The athletics however didn't go as well as planned LOL. The weather was terrible (for being outside, but great for the drought!), and I ended up running quite a bit worse than here in JHB. So the altitude made no difference there!!! The track was so wet, and I don't have spikes, so I ran barefoot, which probably made me slower too. The important thing is that it was a lot of fun! I was the only female athlete doing this event, as the others withdrew due to being sick or injured, so at least I came first! The below article was in a local Eastern Cape newspaper today. If you understand Afrikaans you should be able to read it!

Saturday eve was the Gala Dinner, and Sunday we headed back home... Apart from the "bad" weather, this was one of the best Nationals' that I've attended in the last 10 years. The food was fantastic, the venues were great, everything was well organised. WELL DONE to everyone involved, I was very proud of the Eastern Cape! We will know later in the year if we've made the SA Team.