Sunday, 12 May 2013

The Specialist, wine, and IV lines

My CT scans came back yesterday, and they aren't great. They show a lot of inflammation in the small airways, and when I breathe out, air gets trapped in pockets of my lung. My lungs function at about 30% of what they should. I can never smoke a cigarette again, let alone the wacky-backy. There's precious little known about Bronchiolitis, and it's unclear whether my condition will improve, or if there's an underlying cause. When we were given this news, I just cried. I only turned 20 years old twelve days ago, and I have permanent lung damage. 5-6 years of smoking tobacco, and 3 years of weed, and there you have it. Mum has to quit smoking too; doctor's orders, for my sake. Even secondhand smoke could cause me to deteriorate. We are officially non-smokers.

My doctor - let's call him the Specialist - is really good. He's funny, caring and easy to talk to; despite being 6'8" and quite intimidating to look at. This morning, after he listened to my chest, he recorded my breathing sounds on his iPhone! As in, holding the microphone to my chest like a stethoscope. It was the first time he'd ever done it, but it worked, crazily enough, and he's going to use it with his students as an example of Bronchiolitis and Chronic Obstructive Pulmonary Disease. 

My food intake's been lower than it's been in quite some time. Thursday was a total loss, with only 8 cans of Coke Zero consumed. Friday and Saturday both totaled in around 500 calories, and today will be 5-600 depending on dinner. I'm trying to keep my menu plain, safe and clean; wholemeal bread, fish, chicken, eggs, potatoes, veggies, fruit, yoghurt. Oh, and my wine. I feel incredibly cautious about eating here, and I have no idea what'll happen to my weight.

On the subject of wine: I'm still trying to figure out why this hospital offer alcohol, as it certainly isn't common practice, but it's something they've done for decades. They give me a quarter bottle, 187ml, of Cabernet and a little plastic goblet. If I can't smoke, or smoke, a drink is a nice substitute. Fun fact: wine is classed as a 'dessert' on the menu.

I'm on so many medications right now. Steroids of a morning, painkillers 4 times a day, weaker painkillers 3 times a day, nicotine patches and lozenges, two asthma inhalers 6-10 times a day (not that I have asthma), my regular seroquel/antidepressant/antidepressant combo at night, IV anti-emetics, followed by IV antibiotics. Blaaah!

I'm going to be in here at least a few more days, though I don't have an exact time. My oxygen saturation was back down to 90% this morning, which is not good. I had to use a shower chair this morning because I nearly fell over yesterday, and am still very breathless and weak.

Bonus: it's 3:30pm, and I haven't cried yet today. I've been a wreck by 8am the past few days, so hopefully today can be my first no-tears day. 

Thank you to everyone who's been sending well wishes. I've said it before and I'll say it again; I'd be totally lost (and incredibly lonely) without this community. 



  1. I love you I love you I love you I totally freaking love youuuuuu :) I'm on a Bella mission tomorrow, you're keeping me sane by giving me focus down here too close to parents and pressure tehe, my Bella mission of taking fun photos from Camden and whatnot. :) I really hope those stats improve at least a little, Has anyone mentioned the ED or has that not come into question that much really? I hope you can leave soon and return to the safety of your little house sunshine, thinking of you xxxx

  2. Hey sweetie, you're in my prayers. I'm hoping you have a speedy recovery! Just try to eat a little. It's fuel for repair. I love you. Take care, okay?

  3. The wine thing is actually common grounds in some hospitals up here to. I've heard of many loved ones being allowed an amount of alcohol every day when going through long stays. Besides red wine is good for the heart (2x 4oz glasse max per day). And maybe offering a treat to the ill is a good way to keep their spirits up?

    Sending you all my thoughts and strength hunn. Hopefully that cocktail of meds will get you back to health and to your home soon!

  4. Thinking of you often and praying for you. You WILL get through this, we're all rooting for you! Sending you loads of love and hugs Bella xxxx

  5. Oh Bella, I hope the doctors are able to help you and you can improve and go home. I am happy you are there for the doctors and nurses to take care of you though.

    I hope being confined to a hospital bed allows your body to rest (though its no secret to you that some nutrients will help your body repair, but I understand when you are exhausted and sick, eating is a chore even for anyone).

    Sending you lots of well-wishes and prayers.

  6. I'm sorry to hear about the negative prognosis and lung danage :.(. Never smoking again would definitely be a wise choice though. It's weird how people smoke for years and nothing affects their health and you've only been smoking for a few years and it's really hurt your lungs. I really so hope your condition improves and you leave the hospital feeling much better than you did going in!

    That's funny to hear about hospital wine though! I guess some mesical folks believe in wine being good for digestive health or something! Rest, take care, and get better!

  7. Ahh I'm so glad you're getting treatment! It sounds like it's really serious, so I can't imagine how bad it would be if you were at home.
    Hoping you get better <3

    Maybe they serve wine because it's actually good for you if you're an adult and you keep it to small doses? Something about like a glass of wine a day is good for your heart or something...

    Love you <3

  8. Wow, I hope you feel better soon <3 xxx

  9. I really hope you feel better soon! Dealing with the bronchiolitis first is probably good, but maybe seriously ask them what you can do about nutrients and eating when you get back home. I swear not eating it making this worse. I really hope things can get better and not worse so you don't end up like this again. Love you so much dear.

  10. Stay strong, hun, you'll be out of the woods soon! And thank you for the update, truly appreciate it :)

  11. I'm so sorry to hear this Bella.
    Try to look at the positives, if they it is unclear whether your condition will improve, it can go both ways, I say it will improve!
    You will get through this and things will be better, hopefully quitting smoking will help too and you will see improvements in how you feel in no time. Take care hun <3
    Alice xx

  12. I love that that hospital has wine :D And I'm glad that you are able to have a little treat like that. Thinking of you as always. Try to take care of yourself there!

  13. :(
    I'm sorry you have to go through this. Every one of us has bad habits and we never expect them to come back to bite us.
    I thought there was the possibility of you getting better? Recovering completely from the damage?
    But even if not, you're still with us, which is a good thing.
    Feel better soon!

  14. It's so scary to think that you could become that ill from that relatively short amount of smoking when it takes some people years and years to get to that point if ever. Sorry that you are facing this at such a young.