Thursday, March 14, 2019

More surgery :-( and holiday

So the result of my reflux tests showed that my previous Nissen Funduplication was done TOO TIGHTLY.... the opposite of what I was expecting. I thought that it had become undone or gotten loose, and that's why reflux was back, but in fact it was done so tightly, that food has not been going into my stomach, but has been lying at the bottom of my esophagus, causing discomfort that felt like heartburn. So I've been wasting my time and money on antacids and other reflux pills. Even though it isn't reflux, it still carries the risk of damaging my lungs and causing rejection.

So on the 27th of March I'll be having surgery to re-do the Nissen Funduplication. I'm kind of dreading it. My first one was super painful, and it took months before I could eat normally again. Maybe that's because it was done too tightly, but it was very unpleasant. Apart from that, it's also just ANOTHER hurdle in my battle to just be able to get fit again after my 2 Achilles tendon repair operations. It feels like the last 6 months have really been one thing after the other, all of it very frustrating. All of these surgeries have also meant that I cannot go back to my anti-rejection medication of choice yet... Certican, as it prevents wound healing. I love Certican because it's so much easier on the kidneys, and it's essentially a cancer drug, which has kept my cervical problems at bay. My blood pressure is also much better on it. Plus it's smaller to swallow! It's just a win all around! AND it doesn't make you hairy like the Neoral! So if I could just stop having problems that require surgery, that would be great.

My lung check-up on the 7th went well. We mostly just discussed the upcoming surgery, and my Dr said that this new diagnosis possibly explains why my medication levels are all over the show. My gastric clearing issues are obviously affecting the absorption of my medication, so it HAS to be fixed asap.

Right now we're on holiday at Storms River Mouth. It's beautiful here as always, and it's nice to have a break from Joburg and daily life. We cannot hike the way we normally do here, as I'm still in the moon-boot, but we managed to walk to the suspension bridges yesterday at least. My right leg is a bit stiff today from compensating for the left leg! My wound is looking great though.... finally. It's completely closed up now... 3 MONTHS after I was operated on the second time. Talk about slow healing. I've also spent an hour on the phone with the pharmacy trying to sort out medication for after the Nissen surgery, and have had scheduling problems with the Achilles surgeon that still needs to be resolved, and I'm stressed out about the upcoming op, so I haven't been chilling on this holiday like I hoped I would be able to. Mostly my own fault, for stressing about something I cannot control, but it is what it is.

On the way down here, I got to meet my cousin's baby for the first time. Lily-Ann. Such a super cutie pie. Tomorrow we go inland a bit to the wedding of a close university friend, Daniel. Looking forward to that!

Tuesday, March 5, 2019

Reflux testings and Home Maintenance!

It's March!!!! Wow! Life has been a bit crazy. We're having ceiling repairs done, so our whole house is a mess, and we've basically moved everything we own into 3 rooms. It should be mostly done by the end of this week, they just need to come back for the spare bedroom after our holiday, because we've been using it! We would never have been able to do this when I was still on oxygen!

Today I had my appointment with the reflux Professor in Centurion. I saw him for a consult, then they did a swallow test, which was not pleasant at all, but I've had worse things done to me! They put a thick-ish sensor-thingy down my nose into my stomach, and then I had to take sips of water and they recorded info of my swallowing. It was NOT fun. Afterwards I had a gastroscopy, which was nice. Because you're sedated! Love sedation! What I didn't love was the 3 attempts to get a drip in and 2 blown veins. During the scope the Prof also placed a "capsule" at the bottom of my esophagus for a 24 hour Bravo pH study. Read more about that here. It's a much better experience than the 24 hour pH probe I had to do 7 years ago. Tomorrow I go back for all the results, and hopefully we can come up with a plan to protect my lungs.

Note-worthy events since my last post was the Rare Diseases Denim Walk at Walter Sisulu Botanical gardens on the 23rd of Feb. Did the walk with Fawn, and managed to walk quite far with the moon-boot on! We also took pics at a genetic facial recognition stand by the University of Pretoria, which was pretty interesting.

This past weekend we also tried out a great new restaurant in Mellville, Ba-Pita. The food is middle-eastern I would say... had an amazing lamb shwarma! I also had a great time doing some book shopping and having lunch on my own at Exclusive Books in Hyde Park on Friday, which felt like a super treat. Plus now I have 2 new books for our holiday that starts on Friday!

And then of course a blog post won't be complete without a picture of Ads! Here he was just being tired and cute. I will try to blog again before we go away on holiday with reflux and lung check-up (on Thursday) results!

Sunday, February 17, 2019

Moon-boot, heartburn and life.

Firstly, the cast is off!!!!! It's been 17 days in the moon-boot now. SO MUCH BETTER! I'm getting physio for the Achilles tendon now too, and so far it's been going well. My range of motion is looking pretty good, thank to the use of artificial tendon. It was much more tight the first time when the cast came off (initially my own tendon was just repaired - no artificial tendon used). It's more comfortable to walk in than the cast, and the heel on the inside of the boot has already been lowered. As you can see on the pics below, my left calf muscle is so non-existent, that I have a snood wrapped around my leg so that the boot doesn't bruise my shin. I want to cry when I look at how thin my lower leg is....

Unfortunately there has been one spot on the scar that is struggling to heal. It's right at the bottom, close to my heel, in the spot where my wound tore open when I fell and tore the tendon the second time. It's obviously taken quite a beating, and there's not much flesh in that area. I was referred to the wound clinic for it, and I've been twice now. It is SLOWLY getting better at least, and closing up. The diabetes and 3 immune suppressants does not make for optimum wound healing. UGH.

The other medical thing that has been on the radar is reflux/heartburn. I had a Nissen Funduplication in Nov 2012 (read more about what that is here), but every so often it feels like I have heartburn, which should REALLY technically be impossible after this surgery AND the fact that I take a pill for reflux twice a day?!? SO I asked my Dr if I could do a barium swallow test. I went for the test on Friday. It's pretty simple, they take an x-ray, and then they take images while you swallow a gross Barium paste/drink in various positions... standing up, lying on your back, lying on your side etc. My Dr hasn't looked at the report yet, but I'm a bit stressed about it because I don't want ANYTHING to threaten these beautiful lungs. (look how nice and long they are! They're not even fitting into that x-ray properly!)

Apart from those medical issues, all else is good. Work has been fairly busy, Adriaan is cute, I was spoiled on Valentine's Day... and we're going away on holiday on the 8th of March... yay! Haven't had a holiday since New York, and Christmas was pretty lame what with my leg and all. P.S. The cute doggie below is not ours, it's Brendan and Marius' new baby!

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 :-)