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Jeremy's bronchiodilators are nebulized Albuterol and Atrovent 2x day with his vest therapies. Plus, Advair 500/50 2x a day. Do you do nebulized albuterol, or an inhaler?

Hehe. Odd foods. Potato chips with peanut butter. Grilled peanut butter and bacon sandwich. Think grilled cheese. The peanut butter gets all gooey. Yum. Pickles (dill or sweet), cream cheese, and pepperoni. A bite-size variation of the ham-cream cheese-giant pickle roll. It sounds...

The Vest company allows a trade-in option. However, you have to pay the difference between the trade-in value of the old and new vest machines. With the version of the vest we have - it would have been in the 5-6 thousand dollar range. Often, this isn't covered by insurance. So - we still...

<blockquote>Quote<br><hr><i>Originally posted by: <b>luke</b></i><br>I have had front row tickets to mothers trying to remove fathers for spite from their childrens lives and I don't think it is right!<hr></blockquote> Or this person could have a legitimate reason to remove the second parent...

Anon poster - do you do any nebulized treatments along with your vest? It sounds like the vest is working - you feel "junky" - which seems to me like it's loosened the mucus. Before Jeremy does his vest, he tends to sound ok, but his breathing is more shallow with a little bit of crackling...

That is one of the most moronic things I've ever heard. Unless your doctor has a crystal ball - there is no way to know what is going to come of stem cell research.

I find it very interesting that most of the people using this are (or were) patients at Mpls. I wonder why this is seemingly the only clinic to use it. -Michelle

I found three abstracts on PubMed that pertain to using HS. <a target=new class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12396422&query_hl=4...

Interesting, as we're also at the Minneapolis clinic - so better questions would be... For Minneapolis people - Which doctor there started you on it? Anyone not going to the Minneapolis clinic use Mucomyst?

Anyone use Mucomyst (acetylcysteine)? I was just curious, since I haven't heard it mentioned much around the forums. -Michelle

Things to look at: -Out-of-pocket maximum for the family. -Lifetime maximum/maximum per year -Rxs -What is the copay? Are there tiered copays (different amounts of $ based on what medication it is)? -Can you get maintenance meds cheaper through a 3 month supply mail order? -Will...

I found an interesting read on the zithromax/PA interactions. <a target=new class=ftalternatingbarlinklarge href="http://www.rednova.com/news/display/?id=216711&source=r_health ">http://www.rednova.com/news/display/?id=216711&source=r_health </a> It explains more the pathways in which...

I really don't think a "That really sucks" statement quite covers it. Unfortunately, I have no real helpful advice to give. And so - I shall just go with the aforementioned that really sucks statement, and wish you much luck in getting your transplant.

Mucomyst is a mucolytic agent - the dose he uses is 2 ml of 10% solution. Colymycin - colistmethate is an antibiotic. In this case, it's for psuedomonas, I don't know if it's used for any other bugs. Atrovent (ipratropium bromide) - is a bronchodilator. -Michelle

Treatments also seem to vary from doctor to doctor and clinic to clinic. This is Jeremy's list of lung-related meds (U of Minnesota clinic) -Mucomyst (acetylcysteine) (neb) (2x day) -Albuterol (neb) (2x day) -Atrovent (neb) (2x day) -Hypertonic saline 5% 5 ml (neb) (2x day) -Vest (2x day)...

Anon - I'm curious as to what your lung function is, and if you've been on IVs and stuff for infection lately. The prednisone seems like an odd dosing to me (not that I'm a doctor or anything though). Any reason why your doc choose that in particular?

The U of Minnesota (Fairview) clinic ranked at the top of the list. Beyond that (since that's where we go) - I didn't pay much attention to any mentions on the rest of the list.

I find that the best way to deal with it is to be involved as much as I can. I go to doctor's appointments. I read news articles about new treatments. I try to read studies about different medications. I take care of med ordering (so darn many Rxs), and setting up pill trays (I'm good at...

It's upsetting that your doctor told you there is no evidence. You should look up the studies and print out copies for him. What I would do would be to find another doctor. Excuses like "it's hard to get" are bull, since that's NOT a reason not to use something. Our CF doc warned us that it...

I don't have my study links at work, but I believe there is a study about alternating pulmozyme/hypertonic saline on an every other day basis. If you want, I might be able to find that link again. There are studies that vary the percent from 3-10%. Jeremy uses 5% hypertonic saline 5 ml/twice...