Sunday, June 16, 2019

Of Lungs and Love

Life has been a blur of events this past month. I'm not even quite sure where to start.

My health has been amazing. I had a check-up on the 29th of May and it was one of the top 5 check-ups of my life I would say. My lung function hit an all-time high (with these second lungs) of 95% FEV1%, and volume (FVC) was 112% or so. All the numbers were up basically. Which might mean that the second Nissen Funduplocation might have just been a brilliant thing to happen to me, and maybe, just maybe, has given these lungs more years of life than they would have had, had the "too-tight" old Nissen remained. I'm back on my usual cocktail of anti-rejection meds, after it was changed when my Achilles tendon tore at the end of October last year, and my kidney function had already improved in just a week of being back on Certican. Dr said that my second transplant has exceeded all his expectations, and that he never thought it would be THIS good. So yay on that front. Physically I'm winning at life right now. Achilles tendon also doing great.


Relationship-wise I'm not. Chris and I have decided to get divorced. It was a very painful and difficult but mutual decision. So the next few months will bring a lot of changes. I will always be very thankful to Chris for supporting me and standing by me the past 9 years. We've been through more than a lot of couples go though in a life-time, and will hopefully stay a part of each other's lives to an extent, but not as husband and wife.


To add more legal admin to life, it's been 9 months since we've decided to dissolve our old organ donation NPO, Love Life; Gift Life, and it's STILL not anywhere near sorted. And the 4th director - who initiated the dissolution,  has left the country permanently without telling us, and now it will take even LONGER to get things rounded up. We worked so hard to promote organ donation in that organisation (as we are now, with TELL), for WHAT? Was it worth this crap that we're going through for the last year? At least we've learnt some lessons....

On top of getting divorced and trying to get rid of an NPO that we didn't want to get rid of in the first place, I also had a small car accident with another car on the highway 2 weeks ago. So my car goes in for repairs on Thursday. Not a big deal, and it could have been much worse, but still a pain in the ass, and not something I need right now.

BUT I am healthy and that's the most important thing. And optimistic about what the future holds. And I'm the aunt of this cutie pie. So that's enough for now. At least my life's not boring.


Sunday, May 19, 2019

Meeting first donor's son, Achilles and Nissen updates, "gaybe" shower...

It's been almost a month since I've blogged! There's just too much happening, I don't have time to sit down and type a post! But let me try and do a quick update, for those who don't see me often, and don't want anyone thinking I died or something!

Health-wise, nothing has happened on the lung front, but I had a check-up with the gastric surgeon, and he is 100% happy. I can now eat all food again, yay!!!! HOWEVER if I eat too much I feel terrible. And my capacity to eat is a lot less still than it used to be. So I just need to be mindful of that. I can also drink my meds in pill-form again, yay! No more gross liquids! Surgeon said that my previous Nissen was badly positioned and executed, and that he reversed it, and moved it up 4cm. So far it definitely feels like it has worked... no reflux-type feelings. May the lungs be forever free from foreign food objects now!

Achilles tendon is looking OK... better than it did!!! Like a million times better! Muscles still have a long way to go though. It will take MONTHS to heal properly. Working on it.



I've been BEYOND BUSY with our NPO TELL. Our website is up now. Our #makeitknown campaign is in full swing. Did a radio thing on Friday night that you can listen to here. In case you don't know what that is... we've got a campaign going where people are getting quotation mark tattoos so show that they're committed to being organ donors one day. The reason for the quotation marks, is because organ donation is a conversation, and it shows they've had the conversation. Even Chris has gotten the tattoo!! So we've been liaising with tattoo studios across the country. It's been really exciting and hard work at the same time.





What's been super special, and I meant to blog about this earlier, is that at the first #makeitknown tattoo day on 15 April, I finally met my first donor's son in real life. I've met his aunt many years ago, and I've been Facebook friends with him for a long time, but he came for a organ donor tattoo and we met :-) It was really great. (yes yes, you're not supposed to know who your donor family is, and they don't tell you, but in our case the media was involved, a documentary was done, and two and two was put together. Long story... which I don't feel like getting into.) Bottom line is, it was so amazing to meet the guy who played such an important part (probably THE MOST important part) in the almost 10 years that I had with my first donor's lungs. We both have tattoos in honour of his mom... he has a big one on his ribs, and I have the date of my transplant. So we even got some pics of our tattoos together... so surreal to see those dates next to each other.



Our friend from Cape Town, Ditha, was here at the beginning of the month, and we had a great baby shower for her! Or rather "gayby" shower! Ladies and gay men! It was LOTS of fun!




Last night was also quite fun. We all went through to Pretoria in an UBER van to a 40th birthday party! Between that and Friday night's late radio interview I need to catch up some sleep, but it's all worth it!


Monday, April 22, 2019

Complete heath update

Background - on 21 Jan 2013, on the eve of my 5 year lungaversary with the previous lungs, and my first check-up post the previous Nissen Funduplication, my lung function had dropped drastically, without explanation. It was the start of Chronic Rejection, that ultimately led my my second transplant, almost 5 years later.

Back to April 2019 ...  on Thursday I had my first lung check-up scheduled following the latest Nissen Funduplication... As a CF and transplant patient, many things can trigger a sort of PTSD reaction... Some CF patients actually get diagnosed with PTSD, and for the rest of us, like myself, certain things just trigger massive anxiety. Certain smells, the feeling of a nurse or Dr tapping my veins, flickering lights (those long tube lights, that have a slight buzz... long story)... Thursday's lung function test was one of these things. I was SO WORRIED that it would have dropped after the recent surgery. I had no reason to think that it would, but neither did I the last time. You start "testing" yourself every time you climb a set of stairs, or walk uphill. You start looking for the slightest sign of something being "off". You go to gym and push yourself with cardio to see if your lungs can keep up. Sometimes this helps, but it's a bit harder if you're physically recovering from surgery and two Achilles tears.


However I can breathe a sigh of relief.... Thursday went well... As soon as I'd done the lung function test I felt stress leave my body. My FEV1 was 91% and FVC 113%. Unchanged (slightly better than last time actually). I had gas pumped into me and chest aspirations on both side, plus surgery right beneath them lungies, but they stayed fine. I've also had to take my anti-rejection meds in liquid form (which somehow just feels a lot less accurate than taking pills), which has also added some stress. I'm SO HAPPY... I just want them to stay happy and safe. I want to tell them that things will get better from here, they will get more exercise again SOON!

What WASN'T fantastic, was my hemoglobin levels. They're supposed to be between 12-15... mine is 8. This is due to blood loss during surgery and my stupid liquid/soft food diet. I've been craving meat like a crazy starving person. I've not been prescribed Ferrimed twice a day, and bloods again in a month's time. It also explains why I've been feeling DEAD TIRED. Can't wait to start feeling better.  The other thing that needs to be watched, is my CMV viral load, as it was a bit elevated. So I'll repeat those bloods again in a month's time too, to keep an eye on it. Hopefully then I'll also be able to change back to Certican, and shed this layer of bodily hair that the Neoral has given me... I'm gross! Due to said low iron in my blood, we basically did nothing this long weekend. Saw the family twice and that was it. I slept, watched TV, worked on TELL stuff, and "ate".

In terms of the Nissen surgery, things are going OK. wounds look AMAZING, and pain completely gone. However my tummy is struggling. I'm either hungry or nauseatingly full. If I eat a few bites too many I feel sick. And Creon absorption seems to be random at best. Tummy has been upset a lot, and super confused, but I know this happens. Luckily food hasn't gotten "stuck" at all, and I haven't struggled with swallowing anything. It's just the volatility of my stomach that's getting to me. Also, not heartburn/reflux, so that's good. Check-up for that is 8 May, when the Dr will be doing a scope again to check the healing and final result. I just want to eat a burger and chips, or sushi, or a massive steak and salad, or a toasted sandwich... I want to eat until the hunger is gone and NOT feel like I need to vomit. From Wednesday I'm allowed "soft food"... aka mince meat and pasta. Hopefully that will also make me feel better.

So all in all, there are some frustrating things, but the most important thing, the lungs, are perfect.

Thursday, April 4, 2019

Day 8 post op

So the redo Nissen Funduplication went MUCH better than anticipated. Unlike last time, I woke up with almost no pain. The Professor said that the surgery was complicated, but that he was happy with the result. They also did chest aspirations on the left and right side of my chest, which is not something I've heard about before. It sounds like they stuck a thick needle into the chest cavity to release the CO2 gas that they pump you up with for the laproscopic surgery. The Prof said that when they pulled my stomach down from underneath the lungs, a lot of gas goes into the chest cavity and it would have cause extreme pain. Excuse my non-medical explanation! The one on the left side left quite a massive bruise! The Anesthetist was FULL of compliments about my lungs though!! He said they sounded brilliant when he saw me before the op. Afterwards he said I was the healthiest CF patient he's ever seen (probably the only post transplant one too to be fair), and he also said my lungs were the best of all the patients on the theatre list that day... I was the easiest patient!



I came out of theatre between 7 and 8pm on the Wednesday evening, after a long day of waiting. The Thursday was BUSY... I had to go for a barium swallow test to see if I'm allowed to start my liquid diet. I had physio, saw the dietitian. was allowed to start the liquid diet, and had to go for "wound education" on how to look after the incisions at home. I was also given a follow up appointment date for 8 May, where I will be getting a post-op scope. The whole systems sort of functions like a machine! Discharge was on Friday, about 36 hours after the op! The most painful part was trying to get a drip into my crappy veins :-(

I now have 23 "hole" scars on my torso... 7 from first transplant, 5 from first Nissen, 6 from second transplant and now another 5. This is excluding the big scars from transplant and ECMO, or little scars from central lines. I do feel a bit like a voodoo doll with the crazy Achilles scar plus these 5 fresh ones though!

Yesterday was my nephew Adriaan's birthday!!! He's 2 years old now! I've been able to spend some good time with him and the rest of the family this past weekend! Annelie (my mom's sister) was also here this weekend, so it was great seeing her too.



Apart from being hungry all the time, that's the only news for now. Let's hope this surgery was a success... and no more surgeries anytime soon! I've had ENOUGH!

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!