A light mist hangs suspended in the air, air that is sultry and moist. The birds sing their dawn chorus. Little Guy had a bad dream. Aroused from sleep at 4am I stumbled in the waning dark in search of "magic spray" (my perfume)that chases bad dreams away. A kiss and a cuddle and Little Guy sleeps again but mama's wide awake! And so it goes....
It seems I may have unintentionally created drama with my last post. No need for drama, no need for worrying or fretting. In fact her words, if anything, bring comfort, "time...", "peaceful....".
Have I told you lately that I am feeling really well these days? I feel like the sparkle is back, the energy is flowing. I had another infusion yesterday and it went really, really well. As I lay there receiving the medicine in my veins I imagined the healing that was taking place. I have been experimenting a little with meditation and was able to do a little healing meditation, blessing those around me, those in pain, those taking care of me and those close to my heart. (I don't know if that really helps others, but I know it helps me and my relationship with the world.)
The results from my CT scan of the previous week came back and my lungs appear to be stable, no new damage. Good news indeed! It seems that the remicade infusions, while maybe not completely eliminating the disease is at least inhibiting further lung damage. The report notes the loss of lung volume from previous disease activity and extensive fibrosis and scarring of lung tissue and of course bronchiectasis (floppy airways)in the lower lobes. But...just a week or so ago the New England Journal of Medicine published the findings of a study funded by The National Institute of Health and carried out at Brigham and Women's Hospital in Boston. This study claims to have identified stem cells capable of repairing damaged lung tissue. Of course it is a controversial study and of course it so far has only been conducted on mice (to which we owe so much gratitude for their contribution to medicine, seriously!) but surely it is a sign of hope and progress.
http://www.sciencedaily.com/releases/2011/05/110511170837.htm
I certainly think it is!
"Well, you will never run a marathon." Etty suffers from ongoing Sarcoidosis which is a chronic inflammatory disease that primarily involves the lungs. Niamh, her sister, likes to run and is going to run the Cork City Marathon on June 6th to raise funds for those suffering from chronic lung diseases. This blog will be a parallel account of their trials and tribulations in the coming months: the would-be marathoner; the mother-of-three moving home and struggling with serious, ongoing Sarcoidosis.
Showing posts with label bronchiectasis. Show all posts
Showing posts with label bronchiectasis. Show all posts
Friday, May 27, 2011
Thursday, April 28, 2011
Huffing and Puffing
Easter just passed me by this year. I barely remember it.
Last weeek was the kiddo's Spring Break which we heralded in with an exciting day at the Boston Marathon and followed it with two mad days of city exploring, albeit in the rain. By Thursday the kiddos were ready for a rest day, we had really been pounding the pavement and everyone was exhausted. They slept in, relaxed, read books, watched a movie... I took advantage of the time to catch up on all the laundry that had accumulated over the few days. There were meals to be planned and the fridge and pantry needed re-stocking, there was hair from the Oversized Dog all over the house and that needed vacuuming, there was toothpaste adorning the bathroom sink and mirror, (sometimes I wonder if they're actually finger-painting with toothpaste rather than brushing their teeth, honestly!) all in all this house needed to be whipped back in to some kind of order and passable cleanliness. By Thursday evening I collapsed into bed, exhausted.
Friday morning, when all I could muster as a good morning to Hubby was a breathy squeak, I knew I was in trouble. I had lost my voice, was completely congested, throat was extremely sore, my body ached and head felt as heavy as lead. I had a fever but the most worrisome symptom was the cough that rolled around in my chest. The secretions were thick and blood tinged, never a good sign, but I was managing to expel them and that was important. I knew that over the next few days I would have to be very vigilant in trying to get as much of those secretions up and out as I could.
Those of us with chronic inflammatory lung conditions, such as sarcoidosis, are at risk for developing something called bronchiectasis. The airways lose their elasticity from being inflamed all the time, they become lazy and not as effective in doing their job in helping to expel secretions. When secretions pool and just stay in your lung it becomes a perfect breeding ground for all kinds of viruses and bacteria, not least of all, those causing pneumonia. It was time to employ those coughing techniques that a respiratory therapist had taught me in 2007 when I was battling hard with an aspergillus infection in my lung.
I find the "Huff-Cough" (at least that's what I call it) to be the most effective. You take a deep breath and literally "huff" ten times, (it helps if you think of the Big Bad Wolf!) as if you were trying to blow out a candle but with your mouth wide open, lips apart, almost as if you are smiling and with as much force as you can muster. You have to resist the urge to cough mid-way through your ten huffs. Huffing will move secretions around and you'll feel that but don't give in to that cough just yet. After your tenth huff only then can you cough and it's best to cough with your chin dropped to your chest and your mouth and jaw in an "eee" position (almost like a smile) rather than in an "o" position. And you should be wonderfully and productively successful! Bet you didn't know there was a right and a wrong way to cough!
So, I spent the Easter weekend in bed, feeling totally miserable but grateful that it was a weekend and that Hubby could help me out, grateful for the phonecalls of concerned family members. I started antibiotics on Monday and am slowly starting to return to normal activities so all is well, or soon will be.
Meanwhile I'll huff and I'll puff and.......
Last weeek was the kiddo's Spring Break which we heralded in with an exciting day at the Boston Marathon and followed it with two mad days of city exploring, albeit in the rain. By Thursday the kiddos were ready for a rest day, we had really been pounding the pavement and everyone was exhausted. They slept in, relaxed, read books, watched a movie... I took advantage of the time to catch up on all the laundry that had accumulated over the few days. There were meals to be planned and the fridge and pantry needed re-stocking, there was hair from the Oversized Dog all over the house and that needed vacuuming, there was toothpaste adorning the bathroom sink and mirror, (sometimes I wonder if they're actually finger-painting with toothpaste rather than brushing their teeth, honestly!) all in all this house needed to be whipped back in to some kind of order and passable cleanliness. By Thursday evening I collapsed into bed, exhausted.
Friday morning, when all I could muster as a good morning to Hubby was a breathy squeak, I knew I was in trouble. I had lost my voice, was completely congested, throat was extremely sore, my body ached and head felt as heavy as lead. I had a fever but the most worrisome symptom was the cough that rolled around in my chest. The secretions were thick and blood tinged, never a good sign, but I was managing to expel them and that was important. I knew that over the next few days I would have to be very vigilant in trying to get as much of those secretions up and out as I could.
Those of us with chronic inflammatory lung conditions, such as sarcoidosis, are at risk for developing something called bronchiectasis. The airways lose their elasticity from being inflamed all the time, they become lazy and not as effective in doing their job in helping to expel secretions. When secretions pool and just stay in your lung it becomes a perfect breeding ground for all kinds of viruses and bacteria, not least of all, those causing pneumonia. It was time to employ those coughing techniques that a respiratory therapist had taught me in 2007 when I was battling hard with an aspergillus infection in my lung.
I find the "Huff-Cough" (at least that's what I call it) to be the most effective. You take a deep breath and literally "huff" ten times, (it helps if you think of the Big Bad Wolf!) as if you were trying to blow out a candle but with your mouth wide open, lips apart, almost as if you are smiling and with as much force as you can muster. You have to resist the urge to cough mid-way through your ten huffs. Huffing will move secretions around and you'll feel that but don't give in to that cough just yet. After your tenth huff only then can you cough and it's best to cough with your chin dropped to your chest and your mouth and jaw in an "eee" position (almost like a smile) rather than in an "o" position. And you should be wonderfully and productively successful! Bet you didn't know there was a right and a wrong way to cough!
So, I spent the Easter weekend in bed, feeling totally miserable but grateful that it was a weekend and that Hubby could help me out, grateful for the phonecalls of concerned family members. I started antibiotics on Monday and am slowly starting to return to normal activities so all is well, or soon will be.
Meanwhile I'll huff and I'll puff and.......
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