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At home we use a 50 psi compressor for everyday use; however, on the rare occasions we travel or during the weekend at the family lake cottage we use a pari vios or an Philips respironics (sp) that we got from the DME when our last Devilbiss Pulmoaide gave up the ghost. The pari is starting to...
Has anyone experienced a dry/nonproductive cough on Symdecko? DS has been on it for about a month, ended up with a head cold a week or so after starting it. Had some residual sinus issues, which he does sinus rinses for to clear the crud. No I'm not sure if he's getting yet another cold or...
DS' doctor retired and we're now attending a new CF Clinic and a few new labs were ordered. Got most of them figured out --- an additional liver test, the usual vitamin levels, glucose, immunoglobulin... However, on test that I couldn't find any info on, was Anti-IgE, which was shown just as...
I just switched out neb cups and tubing -- we use reusable Pari LC's and the tube keeps popping off despite medicine still being in the cup. This usually only happens if the neb runs dry or there's a crimp. I use the pari tubing on our Invacare mobilare compressor because I've found the tubing...
Recently switched DS to a new CF clinic after his doctor retired and one of the suggestions was to discontinue actigall. DS was put on it as an infant due to elevated liver levels when he was on TPN recovering from surgery due to meconium ileus. At the time the doctors indicated it was the...
Out of the blue at 11:30 pm last night, DS's vest was no more. Came downstairs to see a call for service message with an error code. Tried plugging and unplugging to no avail. Left a message for the Vest provider which had since closed. Sigh. And they never called back, so I contacted...
DS has never done a sputum sample because unless he has an exacerbation, he doesn't cough anything up. So he still gets a throat swab. Just got back from doing labs and they sent home a sputum sample collection kit. Told us to do it first thing in the morning; however, I'm not sure he'll have...
Hill Rom has come out with a new vesting system, similar to the Afflo (sp) vest. Wonder how this compares to the regular vest system in terms of pressure and hz settings. Sent an inquiry for more information. Here's the link to their site...
This announcement makes me a little wary. We've had issues with our BCBS Pharmacy (Prime) in the past -- issues with prescriptions we've never ordered being charged to insurance, not being able to get scripts filled due to already having received said shipments which we never ordered, nor...
Has anyone here ever replaced parts --- specifically the pressure gauge on their Invacare MOBILAIRE 50 PSI Compressor? I've found the part online and appears to run about $40-55 a pop....
Last year, unbeknownst to us, ds' Orkambi became a medication that required prior approval and it took me about 4-6 weeks to straighten things out and get the prescription filled. For a medication ds had been on for 6 months. With that, were limitations on how much we could receive at a time --...
Long time member of this site, Mom2RT recently posted on facebook that her 14-year-old son recently got a lung transplant. Those of us who've been on this site for awhile have watched Reese's progress. He was recently the rock start of the month on the following site...
Just figured it might be nice to hear updates on those who are on Orkambi.
DS age 13, started on Orkambi July 31, 2015. He's grown taller, gained weight. Culture results this June again showed normal flora and epithelial cells. Since he was 2-3 months old he always cultured something --...
Ds' vest just stopped, had a message 7 call for service. Unplugged and restarted. Anyone have this message before. Course it's after hours, on a weekend and I'm at the family lake cabin.
With school starting for some in the next few weeks, might be a good idea to post some helpful hints. Here's a link that I found especially helpful. Our own Lisa Greene's site:
http://www.happyheartfamilies.com/SchoolIssues.html
Each year I get a packet of info together for the school as...
My pharmacist just called asking where we get our CF vitamins as he received a call from a nurse at a CF clinic who had a patient who needed aquaADEKs, but insurance doesn't cover and parents couldn't afford. Last month I ran out of cf vitamins and had to order online and a 30 day supply ran me...
Lisa posted the following on Facebook this morning. Please keep her and her family in your thoughts:
My children and I are devastated, heartbroken, empty. My dear husband Carl passed away yesterday after having a heart attack on Monday night. He is dancing with Jesus now. Thank you all for the...
With the holidays coming up and potential for people spreading germs and happiness, wondering about c diff and how contagious it is, precautions to take... There's a relative by marriage whose toddler supposedly has c diff; however, this individual tends to exaggerate. So if her child truly...
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