Sunday, January 27, 2019

11 years since the first transplant and 5 sleeps till the cast comes off (again!)

Jan has felt SO SLOW, as it always does, however it feels like just the other day that I blogged, but it's been almost 3 weeks ago!

I had a lung check-up on the 14th. It went great. Had one of my highest lung function readings (a big relief, seeing as I'm not doing cardio at the moment so it feels like I'm out of touch with how "good" my lungs are... if that makes sense.). My blood pressure is just a bit high at the moment, along with my Neoral levels, so that has been decreased. I had bloods done again for this on Thursday, and it's still too high, so it's been decreased again. (I had to stop Certican and increase Neoral when I first tore the Achilles, because Certican prevents wound healing). Hopefully when I see my Dr again in March I can go back onto Certican. My veins and I are NOT appreciating these medication changes.

It's 5 more sleeps until my cast comes off! VERY VERY excited for that. This time around, I'm getting a moonboot after the cast is off, with a heel on the inside, to try and ensure I don't tear it again. The moonboot has been picked up and is ready! I've been exercising with my biokineticist again, and also went back to gym today, to make sure that all the other muscles don't disintegrate along with my left leg's calf muscles. It's also just been great for my mental well-being.

On Tuesday it was the 11th anniversary of my first lung transplant, on 22 Jan 2008... which was also a Tuesday. That's basically a third of my life without CF lungs now. What a blessing!!! Even when my lungs were in rejection, they were still better than CF lungs were at the end. And on Thursday it will be 15 months with the NEW new lungs!

To celebrate, Chris and I went to watch Bohemian Rhapsody on Tuesday afternoon. WOW... what a movie!!!! If you haven't seen it... do yourself a favour and GO WATCH IT! It's freaking amazing. Obviously been listening to Queen in the car ever since then!

Yesterday we had lunch with my parents and sister and Pierre at Bambanani in Melville. A pretty great spot to eat out with kiddies! We, as well as the Ads had a great time. My mom also pointed out to me that I have 2 grey hairs... my first ever... so I'm feeling proudly old! Who would have thought 11 years and 1 month ago that I'd ever get to have grey hairs??

Other random pics from the last blog post:

Last Sunday we celebrated my friend Talia's 1 year lungaversary, which was pretty cool. on the left is Aviva, who has been my physio since that first transplant, and in the middle is Byron, my biokineticist for the last 3 years! Fawn, Talia and I are/were their patients! And then Adriaan with my sister's sunglasses. Too cute for words.

Tuesday, January 8, 2019

New Year's Resolutions 2019 and garden make-over

My New Year's Resolutions are similar to last year's ones... Don't want to go into too much details, but here they are:

  • Look after lungs/health as much as is humanely possible and avoid rejection. This means religious check-ups, bloods, x-rays, being in touch with my body and acting upon it if anything feels off... avoiding infections at all costs, never forgetting my pills, and also just looking after the other stuff that is affected by CF... diabetes, gynae checks, bone density, dermatologist. 
  • Travel as much as finances and my Achilles tendon allows for. The ultimate would be to see another country again!
  • Recover from Achilles tendon tears and be able to maintain fitness without playing squash or any other such risky activity. I'd like to start swimming again, maybe as a more serious sport (if I'm any good at it). So by the end of they year I'd like to be fitter than I was at the end of October, when the first tear happened. I refuse to let the years of cortisone cripple my life completely. F@ck you CF.
  • Enjoy every moment of quality time with family. 
  • Buy less and save more. I have enough clothes, and I think we have everything we need in the house. I want less clutter (our house isn't too bad, but I've been throwing out a lot of old sentimental stuff that I've been keeping for YEARS... I'm trying to be more brutal with what I get rid of. I'm also organising cupboards one by one - anyone else watching Tidying Up with Marie Kondo????). Plants don't count... but I will try to think twice before buying it!
  • Make a bigger success of TELL than LLGL ever was. We can do it. 
  • Just appreciating every single day... good or bad. At the moment most days feel frustrating due to my injury, but if it wasn't for my donors I'd be dead twice already (if that even makes any sense). Both of my donor's families would give anything to have their loved one back. My "bad day" is nothing compared to having lost you daughter/mother/wife/sibling.
That's it! In a year's time we'll see how well I did! 

This is my 10th week of being injured and pretty much in a cast. One positive thing however has been that I got to see quite a bit of my nephew Adriaan. Not due to my injury per se, but just because he has been on holiday as well and I've been very available! I love the little man so much, and he has really brightened up my December! Here are some pics, including some Christmas pics (I never even blogged about Christmas.... it was chilled... just spent with my family and eating too much).

My other exciting project for December was a bit of a garden make-over! I've always loved gardening, but during the last few years that I've been too short of breath to do much gardening, it has become neglected and quite overgrown. I decided to get a little bit of professional help in, and had a local business assist with some landscaping. They put in new borders for the flower beds, and took out some pavers that were at the bottom of the garden that I didn't like and didn't serve a purpose.  They also took out some of the irises that had gotten out of hand. Here are the before, during and after pics! Ads and my sister also helped with the planting of some new plants for me, as you can see!

I think it's looking so much better now! And we've had some nice rain, which is helping. By the time summer is over it will look pretty great! Very happy with the result :-)

Monday, December 31, 2018

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.

Saturday, December 22, 2018

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...