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.


Anonymous said...

Praying all goes well from here on out, Alice. Tummy issues are no fun -- I've had them for decades. Lots of trial and error, but under control most days now.
Sherry Boyle

Shari said...

So glad the lungs are doing well! Now to get your belly healed!!
Shari Judd