Sunday, March 24, 2019

Last holiday pics, Achilles tendon update, and stressing about Wednesday.

We've been back from holiday for a week now. It's been pretty busy as I'm trying to get a lot of work-work and TELL work done before my op on Wednesday, to try and compensate for time off afterwards. I also had a routine dermatologist appointment on Monday, and she cut a little bump out on the side of my face. It started as what looked like an in-grown hair (the Neoral that I've been on makes me SO HAIRY!), but I've been scratching it for months now. Even when I don't scratch the scab off, it just doesn't heal. So the Dr said it looks more like a wart or something to her, but she would prefer to cut it out and send it to the lab. So my week started with some un-scheduled cutting! The 4 stitches are coming out on Tuesday, the day before my redo Nissen op.

I'm out of the moon-boot!!! Achilles is doing well. It feels like heaven to be walking around like a normal person again (sort of!), for the first time in 5 months. I've driven my own car again this week (it's a manual car, not automatic like Chris'), and I've been able to SHOWER again!!!!!!! Yesterday I went to the gym, and it was so nice. I only do a little bit of Achilles exercises - that the physio showed me, for the rest I was just doing upper body, cycling, and some thigh stuff. It just felt so good to have a free leg! 12 Weeks in a cast, 6 weeks in a moon-boot and 2 surgeries later....

Wednesday is the redo Nissen Funduplication. NOT looking forward to it. It's a different hospital, I don't anyone there, they're not a transplant hospital, and it's pretty far from home in terms of getting visitors. When I'm at Milpark it's close to my family with like zero traffic to get there, so they visit often. The staff and Drs at Milpark also feel like family after going there for essentially 12 years. At Unitas Hospital I have literally only seen the Professor twice, briefly. I should be there for 2 nights only, if all goes well... I just remember it was extremely painful last time :-( In hindsight, my lung Dr said that the fact that it was done way too tightly might explain why I found it so terrible compared to other patients. He says no-one else has ever complained that the pain was that bad! So let's see...

I haven't posted the last of our holiday pics... Here are some of the Nieu-Bethesda photo's. It's a quaint little Karoo town, outside of Graaff-Reinet. We went there for Daniel and Anneen's wedding, and enjoyed the guest house we stayed in a lot! The 2 restaurants where we ate both had AMAZING food, especially Die Waenhuis. We were super impressed! Really a great little weekend getaway spot! There is also the most fantastic second hand bookshop... I could spend HOURS there... and of course the famous Owl House! What a fascinating and weird little place!!! Well worth a visit, and do a guided tour if you can. We didn't do one, but heard some interesting stuff by eavesdropping on one.

The wedding itself was also very nice. The weather was perfect, and it was great seeing some of the PE people again. (The first pic is with the newlyweds, the others are just some pics taken in the town).

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!