I think this is the number one question I get asked these days. It makes sense now that I’m walking around with the fashion accessory of an oxygen cannula in my nose! (Really got to come up with a way to bling the cannula!)
So, here’s how I’m feeling – I’m feeling great! In fact, I feel better than I’ve probably felt in the last year. It seems so ironic that my entire life is in turmoil trying to make plans to move to be near the transplant center when for once I do feel pretty great.
I think it is because after two years of coughing (a pretty severe cough the last six months), I am now on round-the-clock Codeine and am NOT COUGHING!!!! They also switched my inhalers from Serevent and Q-var to the max dose of Advair. We had switched them two years ago because these two drugs were supposed to be the same as what is in the Advair diskus but they were much cheaper. Turns out they are not as interchangeable as we had thought.
Since I’ve been back on the Advair the asthma-like symptoms are much improved. I’ve been able to back down the dose of the Codeine, although not drop it completely.
I’ve also noticed that I’ve been able to back down the amount of oxygen I’m using. I seem to be okay walking around my apartment or short distances. When I walk the dog or run errands though, I definitely need it. I also need it on continuous flow at night.
This does not mean that I don’t need to start getting ready for the lung transplant process. I look on this improvement as temporary and a gift from God to give me the energy to get all of this stuff done and make this happen!
It is hard to explain to people who haven’t been through it how much time it takes just to get the wheels in motion! Plus, you still have to keep doing the day-to-day things you had to do before your crisis – grin.
I should blog more about all of that, but will save it for later.
P.S. – Any creative ideas on blinging your oxygen??? My attitude is, if you have to wear it, you might as well flaunt it! I think part of the reason lung diseases are so poorly understood is that people with lung diseases often are not as visible. It’s often because of the limitations of life on the leash (the oxygen.) I am learning some tricks of the trade for keeping my independence. More on that later too.
So, here’s how I’m feeling – I’m feeling great! In fact, I feel better than I’ve probably felt in the last year. It seems so ironic that my entire life is in turmoil trying to make plans to move to be near the transplant center when for once I do feel pretty great.
I think it is because after two years of coughing (a pretty severe cough the last six months), I am now on round-the-clock Codeine and am NOT COUGHING!!!! They also switched my inhalers from Serevent and Q-var to the max dose of Advair. We had switched them two years ago because these two drugs were supposed to be the same as what is in the Advair diskus but they were much cheaper. Turns out they are not as interchangeable as we had thought.
Since I’ve been back on the Advair the asthma-like symptoms are much improved. I’ve been able to back down the dose of the Codeine, although not drop it completely.
I’ve also noticed that I’ve been able to back down the amount of oxygen I’m using. I seem to be okay walking around my apartment or short distances. When I walk the dog or run errands though, I definitely need it. I also need it on continuous flow at night.
This does not mean that I don’t need to start getting ready for the lung transplant process. I look on this improvement as temporary and a gift from God to give me the energy to get all of this stuff done and make this happen!
It is hard to explain to people who haven’t been through it how much time it takes just to get the wheels in motion! Plus, you still have to keep doing the day-to-day things you had to do before your crisis – grin.
I should blog more about all of that, but will save it for later.
P.S. – Any creative ideas on blinging your oxygen??? My attitude is, if you have to wear it, you might as well flaunt it! I think part of the reason lung diseases are so poorly understood is that people with lung diseases often are not as visible. It’s often because of the limitations of life on the leash (the oxygen.) I am learning some tricks of the trade for keeping my independence. More on that later too.
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