Originally posted in Cystic Fibrosis - Adults

<p>My 20 yr old daughter cultured VRE (vancomycin resistant enterococci) from her last sinus surgery. She has not had any vancomycin given to her. &nbsp;The clinic and ID docs are not concerned and do not recommend any treatment. They are not concerned about her transmitting it to a non-CFer. She will be put in iso rooms from now on while in the hospital. She has not had to do this previously. The docs are also not concerned that her SA (staph. aureus) and PA (pseudomonas aureginosa) will convert to vanc resistant. Those two orginisms are already multiple drug resistant.&nbsp;</p>
<p>I am concerned that because this is most likely hospital acquired, the clinic docs might have a conflict of interest in handling it. My research on the web indicates that this is a potentially serious complication. According to what I read, it can be transmitted to a non-CF person, who could then become a carrier. &nbsp;I also read that it can give the PA and SA vancomycin resistance.&nbsp;</p>
<p>I do not know who to contact for more info, since her docs are not concerned. &nbsp; Any suggestions???</p>

Originally posted in Cystic Fibrosis - Adults

<h1>New York City Half-Marathon 2012</h1>
<div class="subtitle team-boomer-events-subtitle">03/18/2012</div>
<p>For the second year in a row, the Boomer Esiason Foundation is proud to be among the New York Road Runners&rsquo; official charity partners for the&nbsp;<a href="http://www.nyrr.org/races/2012/nychalf/apply_2012.asp" target="_blank">2012 New York City Half-Marathon</a>.</p>
<p>The Foundation will provide guaranteed entries for the&nbsp;<a href="http://www.nyrr.org/races/2012/nychalf/apply_2012.asp" target="_blank">2012 New York City Half-Marathon</a>&nbsp;to 20 runners who pledge to raise funds for the Foundation. The runners who participate on behalf of BEF will receive fundraising guidance as well as pre-race and race day support.</p>
<hr />
<p><strong>APPLICATION AND FUNDRAISING INFORMATION</strong></p>
<p>A limited number of guaranteed entries are available for this event. To be considered for an entry, each athlete must commit to make a donation or raise funds totaling $1,500 or more to the Boomer Esiason Foundation.</p>
<p>BEF is 501(c)3 non-profit organization, and your tax-deductible donations help fund research for a cure for cystic fibrosis, as well as our&nbsp;<a href="http://esiason.org/thriving-with-cf/scholarships/exercise-for-life-athletic-scholarship.php">Exercise for Life Scholarship</a>&nbsp;to improve the quality of life for individuals with CF.</p>
<p><strong>Fundraising Commitment</strong></p>
<p>For this event, Team Boomer has guaranteed entries for 20 runners. To be considered for an entry, individuals must commit to make a donation or raise funds totaling $1,500 or more to the Boomer Esiason Foundation.</p>
<p>Your credit card information is required as a guarantee against the pledge. The Boomer Esiason Foundation reserves the right to charge the balance to the credit card we have on file if the minimum amount is not raised by 11:59 pm EST on March 12, 2012.</p>
<p><strong>Cancellation Policy</strong></p>
<p>Once you accept an entry into the New York City Half-Marathon from Team Boomer, you are subject to cancellation fees and/or fundraising commitments as follows:</p>
<ul>
<ul>
<li>A minimum of $1,500 must be raised and collected by BEF by March 12, 2012.</li>
</ul>
</ul>
<p>&nbsp;</p>
<ul>
<ul>
<li>A dedication deposit of $750 is due by February 28, 2012.</li>
</ul>
</ul>
<p>&nbsp;</p>
<ul>
<li>After February 28, 2012, you are responsible for the $1,500, even if you cancel for any reason, including injury.</li>
</ul>
<p><strong>Note:</strong>&nbsp;Donations raised and received by the Boomer Esiason Foundation cannot be refunded, regardless of cancellation date.</p>
<p><strong>Application, Sponsor Sheet and Payment Form</strong></p>
<p>You may download the New York City Half-Marathon charity application, a sponsor sheet and a credit card payment form using the links below:</p>
<p><a href="http://esiason.org/images/docs/2012NYCHalf-Marathon_Application.pdf" target="_blank">NYC Half-Marathon Charity Application</a></p>
<p><a href="http://esiason.org/images/docs/teamboomer_sponsorsheet.pdf" target="_blank">Sponsor Sheet</a></p>
<p><a href="http://esiason.org/images/docs/teamboomer_creditcardsheet.pdf" target="_blank">Credit Card Payment Form</a></p>
<hr />
<p><strong>Questions?</strong></p>
<p>Please call Team Boomer at 646-292-7942 for information and support.</p>

Originally posted in Cystic Fibrosis - Adults

<p>I don't post much, but read the forum quite regularly. &nbsp;We just had our first hospital admission and are currently finishing up home IV's with a picc line. &nbsp;Because of the information I have read on this forum, I think I was much more prepared for this than I otherwise would have been.</p>
<p>&nbsp;</p>
<p>It certainly has not been a smooth experience by any means. &nbsp;I think we have experienced more difficulties than usual, but because I had already read on here of some of the problems and solutions we are making it through ok.</p>
<p>&nbsp;</p>
<p>BTW, my daughter is doing great. &nbsp;Her lung function had been going down slowly the past 6 months. &nbsp;Her high of 116 FEV1 had gone down to 102 FEV1 in December. &nbsp;A round of orals brought her FEV1 up to 108 right before Christmas (if they didn't go up she would have been admitted then.) &nbsp;She caught a cold right after Christmas and at her follow up appt earlier this month her FEV1 had gone back down. &nbsp;Lower FEV1 in addition to changes in her xrays meant getting her first IV's.</p>
<p>&nbsp;</p>
<p>We go back this Thursday for xrays and PFTs to see if she is ready to get the PICC line out.</p>
<p>&nbsp;</p>
<p>Just wanted to say thank you for sharing all of your experiences. &nbsp;We are probably not the only family that benefits from hearing from others that are further along the road than we are.</p>

Originally posted in Cystic Fibrosis - Adults

<p>I looked back at old post to see if I could get my questions answered but none seemed to work.</p>
<p>Has anyone else gone through this??&nbsp;</p>
<p>Do you just feel like crap everyday and is it worth going thru the 18 months of treatment?</p>
<p>I have spent about the past year in and out of the hospital every month to every other month because I have just felt so sick that I knew I needed IV's, finally I cultured MAC. &nbsp;I have had it before but it didn't grow as fast as they would have liked to start treatment right away but now I am at that point where I'll do anything just to fix it because I hate being sick.</p>
<p>Other then the symptoms I found online ( fevers, chills, night sweats, fatigue) anyone else experience anything else?? &nbsp;I am always cold, seem to always have a fever, constantly tired and have aches and pains everywhere. &nbsp;My body feels like a 90 year old women and I feel like sleeping all day, which makes work and school very hard. &nbsp;My social life is non existant anymore because I always feel to sick to go out. &nbsp;</p>
<p>Anyone else experience things like this??</p>

Originally posted in Cystic Fibrosis - Adults

I was admitted yesterday got a good chest infection and been very short of breath and would get burning in my neck and would start to sweat and couldnt think straight…realizing my oxygen level was proly very low..started runnin low fevers and nt sleeping at all in the night..so i realize my oxygen was low and that thats what the burning feeling was posibly?..i also had very high heart rate of 140bpm..

Havent got my sputum bloodwork etc. havent had results on those yet..did find out that i was 85 with my oxygen off when i went to the bathroom cause i have a heart monitor on/oxygen number reader for ur finger..we also did a walk test an my heart rate did get high to 130 bt oxygen was good with oxygen on number was 97…

They started me on prednisone so of course my blood sugars are higher then normal..im also on meropenum, tobi, and vancomycin as my iv's …i couldnt get a picc line in so they had to put two iv's and because like most of us my veins are so small that it was hard to find anything..so monday il have the picc line in..<img src="i/expressions/face-icon-small-smile.gif" border="0">

Originally posted in Cystic Fibrosis - Adults

I know it was the right thing to do being on prednisone..not sure if anyones been reading my other posts but i cried cause i dont want my body dependent on it ya know <img src="i/expressions/face-icon-small-sad.gif" border="0"> realy didnt feel good though stupid steroid!

Originally posted in Cystic Fibrosis - Adults

<p>My mom went into the hospital for pneumonia last week, and has let us know that she doesn't want any more medical care to prolong her life.&nbsp; She has been placed in Hospice.&nbsp; Could you pray that her final journey is a peaceful one?&nbsp; Thank you…</p>
<p>&nbsp;</p>

Originally posted in Cystic Fibrosis - Adults

<p>This is weird! &nbsp;Every so often I get itchy, red hives JUST on my picc line scars. &nbsp;I have had allergic reations before, and this isn't it. &nbsp;They just appear suddenly on a scar and after awhile go away. &nbsp;Has anyone had this happen before?</p>
<p>&nbsp;</p>
<p>I have been sick for about a month now and read a tiny bit about the connection between the immune system and hives and wonder if being sick is making this happen? &nbsp;Is scar tissue different and maybe more susceptible while I'm sick?</p>
<p>&nbsp;</p>
<p>Such a weird thing to happen…any ideas?</p>
<p>&nbsp;</p>
<p>Jessy</p>

Originally posted in Cystic Fibrosis - Adults

<p>I have taken the year off from my job as a teacher because it was just too hard. My lung function is 40ish and I am getting horrible hives and joint pain still, so the lack of working is not really helping. My question is what do you all do during the day? This is more for people without kids. I just don't know what to do with myself and get depressed because of it.</p>
<p>I really need to make a schedule but I have no idea what to do to fill the time. I feel so worthless now and I hate it.</p>

Originally posted in Cystic Fibrosis News From Medical News Today

A receptor found on blood platelets whose importance as a potential pharmaceutical target has long been questioned may in fact be fruitful in drug testing, according to new research from Michigan State University chemists. A team led by Dana Spence of MSU’s Department of Chemistry has revealed a way to isolate and test the receptor known as P2X1…

Originally posted in Cystic Fibrosis - Adults

<p><span>Infiniti has teamed up with ESPN to donate $100,000 to a NCAA Men's Basketball coach based on votes the coach gets. <strong>Kevin Willard</strong> of Seton Hall has chosen the CFF as his charity. So vote for him in the East Bracket to get to the "Final Four" where he'll face-off against three other coaches for the 100K prize. Infiniti has already donated $5K to the CFF due to his participation in this. You do have to join ESPN.com to vote though.</span><br /><br /><a href="http://promo.espn.go.com/espn/contests/infiniti/2012/index" rel="nofollow nofollow" target="_blank">http://promo.espn.go.com/espn/contests/infiniti/2012/index</a></p>
<p>&nbsp;</p>
<p>&nbsp;</p>

Originally posted in Cystic Fibrosis - Adults

<p><a href="http://www.reuters.com/article/2012/01/20/us-insmed-idUSTRE80J1NV20120120">http://www.reuters.com/article/2012/01/20/us-insmed-idUSTRE80J1NV20120120</a></p>

Originally posted in Cystic Fibrosis - Adults

<p>LOST VOICE .. MAC/MAI TREATMENT .. 5 ANTIBIOTICS INCLUDING INHALED AMIKACIN</p>
<p>I had never lost my voice in my life.&nbsp; I began MAC/MAI treatment of 5 antibiotics (Ethambutol 800mg/Azithromycin 250mg/Avelox 400mg/Rifampin 300mg/Amikasin 2ml-inhaled). I then began a journey of first a sore throat .. not feeling well .. then complete loss of my voice.&nbsp; This happened 3 times in about a month.&nbsp; I then went 1.5 months just fine.&nbsp; I now have lost my voice a 4th time since 11/1/11.&nbsp; When it happened a 2nd time in 2 weeks I went to my Internist. She took an Xray .. did not show pneumonia .. said it was probably a virus .. not a bacterial based on all the antibiotics I was taking.&nbsp; When it happened a 3rd time .. I just dealt with it and ignored it.</p>
<p>Now that it has happened a 4th time in less than 3 months .. I am now wondering if it has to do with the MAC/MAI treatment??&nbsp;</p>
<p>My question to the rest of you .. are any of you on inhaled Amikacin and have lost your voice .. a sore throat and not feeling well?&nbsp; I just don't know what else to think.&nbsp; Also .. has a doctor told you with MAI/MAC .. you have a compromised Immune System so that you catch more things?&nbsp; (Perhaps this really is a virus and my body just can't fight it off?)&nbsp;</p>
<p>I appreciate any input you can provide!&nbsp; All this is new to me!</p>

Originally posted in Cystic Fibrosis - Adults

<p>I am 26 years old and have recently had a lot of trouble maintaining my weight. I have always&nbsp;been&nbsp;petite and have&nbsp;been in the 120lb range for as long as I can remember.&nbsp;I had 6 teeth pulled in October and attributed that to losing 4lbs. Well…it's now January and I am struggling to not only gain the weight back, but to also keep the weight I have! My appetite has not changed and I do the best I can to eat high calorie foods. I had braces put on in October as well and that has definitley put a damper on some of the foods that I used to be able to eat with no problem. I spend most of the time picking food out of my braces than eating it! Any suggestions on what I can do to gain this weight back? I checked my BMI and I'm at a normal weight but I also know that being at a very healthy weight for a CFer can mean a better lung function. Any suggestions on what I can do to gain my 4lbs back and then some?</p>
<p>&nbsp;</p>
<p>Thanks!</p>
<p>&nbsp;</p>

Originally posted in Cystic Fibrosis - Adults

Just seein if anyone else is in hospital to <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol

Originally posted in Cystic Fibrosis - Adults

<p>I've been debating whether to post this for several weeks, so here goes.&nbsp; The ears are connected to the nose and throat, infection is common in all these places and is probably capable of traveling between them.&nbsp; We treat people for ear infections and place isopropyl alchohol in the ears (swim ear) to dry out water.&nbsp; However there seems to be very little information on pre-emptively treating the first sign of infection by treating the throat, nose, and ears regardless of where the first symptoms appear.</p>
<p>I started putting drops of isopropyl alchohol in my ears for plane flights and I had this bottle sitting in my room so I started using it more often, anytime there was a bit of scratchiness in the throat.&nbsp; At this point I'm doing a few drops three times a day&nbsp;more often if I'm fighting something along with the neti pot (be very careful combining with ear treatment)&nbsp;and vitamins, gargling with salt water, etc.</p>
<p>One day I didn't have any swim-ear in stock the weather was lousy and I knew I was on the edge of getting sick so I did something crazy and tried ethyl alchohol (hand sanitizer) in my ears and it worked but I'm still trying to find safety data.</p>
<p>Anyway we know there is a nose-throat-ear connection and that ethyl and isophropyl alchohol are good at zapping bacteria on surfaces in a different way then antibiotics.&nbsp; We know that Isoprophyl alchohol and other substances one would not swallow are commonly used in the ears.&nbsp; Which theoretically allows a different method of combating infection and maybe even a delivery method for a limited number/type of medicines</p>
<p>Does anyone else use a similar method to fight/prevent colds rather then an ear infection?</p>
<p>Has it helped you?</p>
<p>Have you ever talked to a medical professional about it?</p>
<p>Is the theory sound?&nbsp;&nbsp;Annecdotally it seems to make a signifigant&nbsp;difference in the number/severity of colds I get.&nbsp;</p>
<p>Is it safe?&nbsp; How much is to much?</p>
<p>Please use caution if you decide to try this, feel free to do your own research, and ask any medical professional who is open to new ideas.&nbsp; And please continue all regular medications this only a possible complimentary treatment that has been of some use to me.</p>
<p>Thoughts?</p>
<p>SFA</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
<p>&nbsp;</p>

Originally posted in Cystic Fibrosis - Adults

<p>I started taking fizzy NAC again. I've been having insane gassiness and just an uncomfortable feeling…ugh.</p>
<p>I was wondering if I'm the only one to experience this and if I should expect it to get better with time. I really don't want to feel this miserable long term.</p>

Originally posted in Fibrosis News

On Thursday, March 8th, the Connecticut Chapter of the Cystic Fibrosis Foundation will host its second annual “Connecticut’s Finest” Young Professionals.

Originally posted in Cystic Fibrosis - Adults

<p>Hi everyone,</p>
<p>Have not posted in a while and hope 2012 is treating you all well so far.&nbsp; I am trying to understand Cayston and Medicare. Seems like I have heard from some that Cayston is covered under part B and others tell me they are covered under part D.</p>
<p>If you are on Cayston and covered through Medicare which part is paying it for you? If it is through Part D than I am assuming you are immediately in the Donut hole right?</p>
<p>I am so confused at this point.</p>

Originally posted in Cystic Fibrosis - Adults

<p>My daughter started 5 day Prednisone burst(on 2nd day) and Zyvox (also second day). &nbsp;She is coughing more today than when she started! &nbsp;Coughed up some clear mucus, I'm guessing the Prednisone opened her up more so she could get the mucus out? I thought the prednisone would tamp down her cough. &nbsp;Waiting on her culture, won't be ready til next week; If she keeps this up tomorrow I may call to see if a prelimary is back, way too soon for sensitivities. &nbsp;Thoughts?</p>

Originally posted in Fibrosis News

Rock ‘n Roll Hall of Fame legend Darlene Love and Broadway’s Mary Testa join Julie Halston , Andrew Rannells , and Seth Rudetsky for the Second Annual Broadway Belts! for PFF Benefit on February 27, 2012 at 7:00pm at Birdland Jazz Club .

Originally posted in Cystic Fibrosis - Adults

<p>My husband (asthma, no cf) and I both use Advair 250/50.&nbsp; We recently had an insurance change and they are now calling advair non-formulary, so our cost is $190 for a 3-month supply&nbsp;instead of $90.&nbsp; When you consider the fact that both of us use it, our cost will be going up $800.00 a year.</p>
<p>Anyway, in order to save money, we are thinking of switching to symbicort.&nbsp; I need to hear from those of you who are on it and what your results have been.&nbsp; If you have switched from advair to symbicort, I'd really love to hear what you thought.</p>
<p>Thanks in advance for your help!</p>
<p>BTW, this same insurance won't cover my Vitamin K anymore, because they don't cover vitamins!&nbsp; Out of pocket will be over $300. per month, so I guess it is bye-bye Mephyton. <img src="i/expressions/face-icon-small-sad.gif" border="0"></p>
<p>&nbsp;</p>

Originally posted in Fibrosis News

There are many young professionals in the greater Milwaukee area who work hard to make Milwaukee even better.

Originally posted in Cystic Fibrosis - Adults

<p>A definite must read. This is one of my friends. Please consider applying if you live in Chicagoland&nbsp;or know someone who does.</p>
<p>It is so important to take pictures of the good times&nbsp;and the bad ones. They have&nbsp;just as many uses and can promote healing to show how far someone has come.&nbsp;Read her story..she gets it and is&nbsp;amazingly talented.&nbsp;</p>
<p><a href="http://www.emilylucarzphotography.com/2012-a-year-to-give-back-to-a-family-in-need-chicago-newborn-child-and-family-photographer/">http://www.emilylucarzphotography.com/2012-a-year-to-give-back-to-a-family-in-need-chicago-newborn-child-and-family-photographer/</a></p>

Originally posted in Cystic Fibrosis - Adults

<p>Josh has been coughing up blood off and on since yesterday morning.&nbsp; The largest quantity was 1/2 cup, but in total I would guess it's more than 2 cups.&nbsp;We called the hospital and are headed to the ER.&nbsp; Thankfully his regular doctor is on this weekend.</p>
<p>She mentioned that Josh may require an embolization.&nbsp; I know what it is, but we have no experience with the proceedure or recovery.</p>
<p>Any advice for us?&nbsp; Thanks!</p>

Originally posted in Cystic Fibrosis - Adults

<p>Was wondering what life was like for you when you were around 26 years old. How is life like now? Any advice for the younger cfers to live as long as you have? Can you tell your story? Intrested to know……</p>

Originally posted in Cystic Fibrosis - Adults

<p>Hey everyone I am getting ready to hold a benifet for CF in CINCINNATI OHIO we will have live music drink specials and if we can get some decent raffle prizes that still working on all the details&nbsp; but I do know for a fact that if you have CF or are a parent with a child with CF you get in for free</p>

Originally posted in Cystic Fibrosis - Adults

<p>I find it very difficult to have people understand me when they dont have cf and do not know much about it. I try to live a normal life and not let anything affect me too much but what most do not understand with this disease is that sometimes you just need to rest and sleep. My boyfriend is very proactive and has a very busy life. I think he has some problems because he can never just relax, always has to be doing something. We are in the process of moving and I got my really bad joint pain for three days. I had to be in bed and not help at all. I try to make him understand, I just cant help, and he tries to accept it but I can tell he fully does not. His parents are the same where they have a lot of family functions where everyone is expected to attend. Sometime I just can not do it! I just want to rest! I think they look at me like im making excuses. They dont know too much about my diease because they dont ask. Just frustrated because I want to live a normal life but as I get older I am seeing that I really need to focus on sleep and resting when Im feeling under the weather. Sorry for the venting……any advice to help people who do not know much about the disease understand and not see the disease as not&nbsp;just an&nbsp;excuse to get out of things?</p>

Originally posted in Cystic Fibrosis - Adults

<p>Hi- This is my first time posting here, but I have enjoyed reading the boards and learning from your comments for some time.&nbsp;</p>
<p>I have sinus and pancreatic problems, but have luckily had fairly minor lung problems thus far.&nbsp; However, I currently have a sinus and lung infection, and I am coughing up mucus, and mucus is going down my throat.&nbsp; I have swallowed a fair amount.&nbsp; I have had minor pancreatitis all week.&nbsp; No appetite and pancreatic pain…this happens fairly frequently, but it usually goes away more quickly if I don't eat/drink anything.&nbsp; I haven't eaten or had anything to drink (except a little water) in the past 5 days, but the pain is still there.&nbsp;</p>
<p>Could there be any chance that the thick drainage I am swallowing is causing problems for the pancreas?&nbsp; If the mucus secreted by the pancreas can cause pancreatitis, could the passage of the mucus that I am swallowing cause similar issues?&nbsp; This seems a bit far-fetched, but I can't figure out another reason why the pain isn't going away like it usually does!</p>
<p>Thank you!</p>

Originally posted in Cystic Fibrosis - Adults

<p>Hi, I have a tough question.</p>
<p>Yesterday I found out that my brother passed away (no cf related). He lived in Denmark, and I live in Spain. My first instinct was to go to the funeral, and be there for my family, in particular my mother. The thing is that in the last two weeks I haven't been feeling too good. I have had a lung bleed, pain when breathing deep, and I am on oral antibiotics and still have lung aches and just feeling crappy. And now I am doubting whether to go or not. The journey to Denmark is 3 hours in plane, then 5 hours in train. I don't know where I'll stay, attend the funeral and journey back the same hours. My spouse advises me aginst going, saying it will be too much for me, and that I'll feel worse after. But I am torn… a tough question, but what would you do?</p>