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.

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!