Sunday, June 4, 2017

Hello June, Hello Winter.

June is here! Winter too.... Not a fan of winter, but luckily Joburg winters are short. Two hand a half months from now things should be heating up again. Apart from the usual annoyances that winter brings.... everything outside here is dead and yellow, cold nights, smoggy and smokey air, DRY air... it's also so much more exhausting to get dressed! In summer it's easy, you throw on a dress. Now getting jeans on is tiring, putting boots on is tiring, shirts, jersey/jacket... I need to catch my breath after getting dressed!

It was great not being sick with my cold anymore last week. I could go back to bio (I was pretty useless), went to the shops with my sister and Adriaan, we introduced Adriaan to Andrew and had a yummy lunch at Paul... so back to "normal". I also finished my "corner to corner" blanket that I started at the end of last year (I've made a few things in between), and it looks great.

Cystic Fibrosis awareness month is also over now. Post transplant with CF is very different to pre-transplant, so it's been a very long time now that I haven't felt like I'm 100% "CF patient" anymore. Yes my pancreas is still a bit annoying but it doesn't affect my quality of life much. Even now with bad lung function and being back on oxygen 24/7 for more than a year now, it's COMPLETELY different than with my CF lungs. The mucus situation is very different.... there is almost nothing. My oxygen saturations are better than they were but I "feel" lower O2 sats MORE??!! Previously I would feel pretty good and considered it a great day if my sats without O2 was 83% (A bad day was in the 70%'s, and I wasn't even on O2 all the time). Now I'm gasping for breath when they're 85%.

Also, if I sit really still and take off my O2, my sats don't drop too badly... my heart rate just goes up. However as soon as I move the sats drop immediately. I also "look" much better. I'm not underweight or thin... I'm less blue, apart from the oxygen on my face I LOOK fine. In terms of my daily nebulising routine.... I neb with Colistin antibiotics for the Pseudomonas that I had last year twice a day. With the old lungs it was  Duolin, Pulmozyme/hypertonic saline, and also the Colistin antibiotics AND physio. However now nebbing doesn't make my breathing easier at all. Duolin doesn't open up my lungs, there is no relief that came with coughing up some junk. The Colistin just MAKES my wheezy. So basically when I'm having a bad day there is nothing I can do about it. I just have to wait it out.

On a more positive note... went to a great Girls Night In at Fawn's house last night. We watched two rather bad movies ("Don't Breathe" and "Mother's Day"... the latter was SHOCKINGLY bad!!!), but it was great fun. Also got to spend some "quality time" with Fawn on Friday when we were waiting for our lung Dr!

The coming week should be pretty productive, a few outings planned. Let's hope June is a great month.

No comments: