Saturday, June 6, 2015

Lungies GOT THE MEMO!!!!! Finally!

So Thursday was my lung check-up. The last one was 11 May when I was sick. Then FEV1 was 38% (I felt so crappy at the time that 38% seemed too high for me) and volume was 83% (also lowest it's ever been.). Bloods also showed infection and I had a temperature then. I was put on an oral antibiotic called Avalon for 2 weeks, higher dose of prednisone for a few days and my Dr gave me 2 inhalers to use, Foxair and Forvent. I've used Foxair previously when I was having the photopheresis treatment, but it made no difference so I asked if I can stop it, as it was hurting my tongue, costing me money, and seemed to be a waste of time.



However my Dr decided to try it again in combination with the Forvent (which is a capsule filled with powder that you manually insert into the inhaler and puncture it to inhale the powder). When I asked why, as the Foxair did nothing last time, he just said "humour me" :-) Got to love him and his scientific explanations :-p (don't think he will read this LOL)

My lungs have definitely been feeling way better since then, but I didn't expect much from the lung function, as the numbers don't always reflect how I FEEL. So when I got 46% FEV1 on the first blow, I was really blown away... (OK bad pun). Didn't even try again (sometimes I try up to 3 times). Volume was 94%, also 11% up. That's about where I was last year when Anna and Casey came to visit in Cape Town. (coincidence.....??? I think not). Needless to say, Dr was very happy. Bloods were all great too. Increase in lung function could possible be due to the inhalers, but we won't know for sure. I'm just going to carry on with them obviously. Weight same at 56kg. Resting O2 sats were 94%, which is fine, but they dropped to 85% after the 6 min power-walk test. That's the same as when I was sick. It jumps up back to normal really fast though, so no-one seems too worried about it.

Needless to say, the week was BUSY, with month-end, and going to the hosp twice after work, once for the bloods and next day for the check-up. Of course both of these also carry with them a certain amount of STRESS, and I can feel it!!!! SOOOOO TIRED right now, could literally not keep eyes open last night and pretty much today as well. Hoping I feel better tomorrow because I'm going to need some energy for next week again! Monday is dentist (scared as shit) and Wednesday is mom's birthday! Did some shopping today and had tea with mom and sis at Vovo Telo, so it's been a good day. Tomorrow is Fawny and Sasha's combined birthday lunch, which is going to be AWESOME.



Charlene (who got her lungs last week Tuesday) is doing GREAT! She is out of ICU and I will be visiting her very soon!!!! Can't wait to see her all pink-ed up!

PS.... some lung terminology explanation.... FEV1 is the amount of air that you can blow out in one second. So one could almost say it's you lung "power". FVC or volume is how much air goes into your lungs. With my old CF lungs both of these were pretty low in the end. However the chronic rejection I have now is completely different, as it causes obstruction in the small airways... so my total lung volume is not down by that much (best ever was 113% I think, so in total it was dropped about 20%, but is still good at 94% or even in the 80's). However, my FEV1 has dropped from 103%, so the amount of power my lungs have has dropped by more than half. That's why I get short of breath more than I used to and feel like I have less energy in general.

2 comments:

Sherry Boyle said...

Very good news, Alice! Appreciate the explanation of lung function terminology. So happy that your friend Charlene is doing so well post surgery! Can't wait to meet you and Chris, Anna and Casey!

Alice said...

Trust me we also can't wait!