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This page shows you the most recent publications within this specialty of the MedWorm directory. This is page number 35.

Patiently Waiting for a Call
Not on duty at the hospital as an RT tonight, but here anyway sitting in a room with my friend Heather. She is getting some antibiotics as we wait for the call from the big hospital over the mountains saying they have a donor for her. She is top of the list for her blood type, and we wait anxiously! I hang around the room all night, adjust her bipap, do percussion on her back when needed, and give her mom a break to go home and relax. Any time the call could come, and we want her to be as ready as possible. Omigawd, it sure is nerve-wracking waiting and wondering! And it is hard on her, dealing with self-assumed guilt that...
Source: Cystic Fibrosis Transplants Forum - March 31, 2011 Category: Respiratory Medicine Authors: cnsky54RRT Source Type: forums

I Have Cystic Fibrosis
When I was born I was actually very healthy. No one expected that I would have CF. I stayed in the hospital for the regular days of a newborn and went home when I was old enough. I few months, two to be exact, I started coughing and stopped breathing during the night. My mother got worried and took me to the nearest hospital. The doctors did many tests and x-rays, trying to find what was wrong. Day after Christmas day I was diagnosed with Cystic Fibrosis. We were all shocked....years past and I am now fifteen years old and living pretty normally. I still have problems with remembering the day my mother told me I had CF. Su...
Source: Cystic Fibrosis Diagnosis Forum - March 31, 2011 Category: Respiratory Medicine Authors: Cojean62 Source Type: forums

Anyone heard of this study?
i know there is at least one gene therapy drug in the pipeline according to the cff but its not anything like what the article is talking about.
Source: Cystic Fibrosis Adults Forum - March 30, 2011 Category: Respiratory Medicine Authors: Crayonlove92 Source Type: forums

> > March 29, 2011 11:30 UTC > > Phase 3 Study of VX-770 in Children Ages 6 to 11
I agree!! I really believe the combined 809x770 will have similar effects for df508....even the 770 had slight improvements with salt levels, indicating that it worked on some level, but not significantly. It's truelly exciting...and yes, two pills a day...so my son (32 this year) is still on it and basically 'normal'exceptt hat he has a bit of pulmozyme...dont know how often....he's not even on creon naymore and hasnt been for over a year (pancreatic insufficient since five mths...my guess here is that the 770 allows the pancreas to work correctly, and it mustnt be scarred in his case). here's hope.
Source: Cystic Fibrosis Adults Forum - March 30, 2011 Category: Respiratory Medicine Authors: dasjsmum Source Type: forums

Did Albert Einstein have CF?
LOL. I always wonder the same about people in my family. I have a HUGE family tree and would love to know more about some ancestors. I guess it is something we can always ponder...
Source: Cystic Fibrosis Adults Forum - March 30, 2011 Category: Respiratory Medicine Authors: nocode Source Type: forums

SSDI
I was just recently approved for SSDI. Still haven't got any money, but at least i was approved. I applied over a year ago. So they will pay me back pay. If you haven't filed yet i would go through the Cf lawyer Beth Sufian. I don't think it cost you any money if you start with them from the beginning. Wish i would have known that a head of time. I got a hold of her once they denied me 3 times. It still took her a few months to get everything ready but i got approved and thats all that matters. GOOD LUCK!!
Source: Cystic Fibrosis Adults Forum - March 30, 2011 Category: Respiratory Medicine Authors: sarabeth87 Source Type: forums

step daughter sick
oh, and yes Grayson is Graycie. Nanaof8andcounting is my mom. her and my dad are my rock and support with all of our kids and for me.
Source: Cystic Fibrosis Families Forum - March 30, 2011 Category: Respiratory Medicine Authors: mom2lilg Source Type: forums

Enzymes!! AGH!
At that age I don't believe DS had normal stools. When he was a baby any little change to his enzymes caused constipation issues. We were just used to them being very light in color -- yellowish orange and would easily break apart in the toilet. Never greasy, but sometimes there would be a greasy ring at the waterline in the toilet. He was always within the 50th percentile for weight, so his doctors weren't concerned. But then he didn't gain any weight, got a little taller. At that point we switched to a larger dosage of enyzmes and we increased the amount and then we began to see normal stools. So in our case, DS probabl...
Source: Cystic Fibrosis Families Forum - March 30, 2011 Category: Respiratory Medicine Authors: ajb900 Source Type: forums

the latest news on vertex 770
In this study, children with CF treated with VX-770 showed the same profound improvements in lung function seen in the recently-announced STRIVE study among an older group of people with the G551D mutation,â€? said Robert Kauffman, M.D., Ph.D., Senior Vice President and Chief Medical Officer for Vertex. â€œWe are committed to making VX-770 available as soon as possible and are moving ahead quickly with our U.S. and European applications for regulatory approval that we plan to submit in the second half of this year.â€? > â€œThe data announced today are highly encouraging...
Source: Cystic Fibrosis Families Forum - March 30, 2011 Category: Respiratory Medicine Authors: dasjsmum Source Type: forums

newborn screening false negatives???
thanks... appreciate this. we just had our 4th son, who's screening came back negative, waiting on genetics just to be sure... but was wondering what the error margin was.
Source: Cystic Fibrosis Families Forum - March 30, 2011 Category: Respiratory Medicine Authors: 3LilFightersmom Source Type: forums

I Have Cystic Fibrosis
When I was born I was actually very healthy. No one expected that I would have CF. I stayed in the hospital for the regular days of a newborn and went home when I was old enough. I few months, two to be exact, I started coughing and stopped breathing during the night. My mother got worried and took me to the nearest hospital. The doctors did many tests and x-rays, trying to find what was wrong. Day after Christmas day I was diagnosed with Cystic Fibrosis. We were all shocked....years past and I am now fifteen years old and living pretty normally. I still have problems with remembering the day my mother told me I had CF. Su...
Source: Cystic Fibrosis Diagnosis Forum - March 30, 2011 Category: Respiratory Medicine Authors: Cojean62 Source Type: forums

Competitive Athlete
My son is a competitive swimmer. We are looking for feedback or suggestions on potential help other CF patients have used to help with their performance when competing. Training and nutrition is a given. With swimming it is important to be at your very best level for a period of 22 seconds up to 5 min. Look forward to hearing back from other CF athletes.
Source: Cystic Fibrosis Exercise and Fitness Forum - March 30, 2011 Category: Respiratory Medicine Authors: giv2cf Source Type: forums

Article
I saw that this morning on the news. DS was on TPN as a baby and a couple years ago. How horrifying!
Source: Cystic Fibrosis Adults Forum - March 29, 2011 Category: Respiratory Medicine Authors: Rebjane Source Type: forums

Jewish National in Dever?
I've heard good things about it from relatives who live in Denver. In fact during a visit when DS was a baby, it was suggested that someday we take him there as "they're the best" according to one cousin who's a medical malpractice attorney. DH's uncle from ND went there a couple years ago due to issues with his COPD -- didn't get the answers he wanted -- a cure, ability to play golf without being on 02; however, he did get some answers to issues and got some meds changed around to help with his quality of life. Being that you haven't gotten any definitive answer where you're at -- maybe it's time for a new set of eyes d...
Source: Cystic Fibrosis Adults Forum - March 29, 2011 Category: Respiratory Medicine Authors: JennifersHope Source Type: forums

help
Michele -- I say this in the kindest way possible...you CANNOT avoid pseudomonas. Its everywhere. Sure you can sterilize everything, avoid dirt and gardening, keep up with handwashing and bathroom cleanliness, but you didn't DO this to your daughter. Its part of this stupid disease. I'm not sure you can do anything else that will keep her from culturing it again.
Source: Cystic Fibrosis Families Forum - March 29, 2011 Category: Respiratory Medicine Authors: MichelleinKY Source Type: forums

Montage
Great job! Max is so cute.
Source: Cystic Fibrosis Families Forum - March 29, 2011 Category: Respiratory Medicine Authors: Ratatosk Source Type: forums

Emily's montage
Tami, I thought it was great! It's so cool to see your family. I love the song Firework. It very much reminds me of my daughter. Maggie can actually sing all the words to Firework. It is a great song for working those lungs!
Source: Cystic Fibrosis Families Forum - March 29, 2011 Category: Respiratory Medicine Authors: izemmom Source Type: forums

Sperm Donor
There is no way to elect to test for over 1000 mutations at a bank? (Even though I'm sure you'd have to pay yourself for that additional testing.) I can't believe that a bank would only test for 97. Well, if you are asking about percentages, one of my mutations would not be found on the 97 test, and I know of several other cases where testing for 97 was done and passed with no found mutations, but mutations were found later. I think your chances are still pretty low, and personal feelings go into this of course, but those are the facts. Best wishes!
Source: Cystic Fibrosis Pregnancy Forum - March 29, 2011 Category: Respiratory Medicine Authors: alabamamom Source Type: forums

Diagnosed with 3 months (of age)
anybody else, who have known this diagnose since birth? I think they made a sweating test as well, 25 years ago. I was born with pneumonia & one night concluded that I am alive now.
Source: Cystic Fibrosis Diagnosis Forum - March 29, 2011 Category: Respiratory Medicine Authors: 2DIE4Corey Source Type: forums

Prograf Dose
Hello, I am pre-transplant and was pricing out all of the possible medications I might be on after transplant. I see Prograf comes in several doses; .5, 1 and 5. What dose levels have post-tx patients been on? Thanks for the input!
Source: Cystic Fibrosis Transplants Forum - March 29, 2011 Category: Respiratory Medicine Authors: Ldude916 Source Type: forums

What's it like?
Hey, Victoria I am a writer myself (and have CF). I appreciate the fact that you would like to be knowledgeable for your book - that's great. Perhaps if you can be more specific on what info you need, people can respond more easily. The "low-down" on extensive hospital stays and life for a CF patient is a very broad subject. Good luck
Source: Cystic Fibrosis Adults Forum - March 28, 2011 Category: Respiratory Medicine Authors: victoriathewriter Source Type: forums

to those who have had sinus surgery
I had one 4 years ago and wish I hadn't. For me I have had worse and more involved issues since I had the surgery than I ever had before the sinus surgery. For me I think my problem was the doc that did mine. I just don't think he did a fabulous job. I think if you have a great doc and it is a well thought out thing go for it. Otherwise I would seriously weigh the pros and cons. Lindsey
Source: Cystic Fibrosis Adults Forum - March 28, 2011 Category: Respiratory Medicine Authors: moxie1 Source Type: forums

Smoking Zigs & CF
I hear u guys. It's a tough balancing act to have fun, yet maintain your health. I don't like when people judge, we are all adults and can make an informed decision. Personally, I prefer quality over quantity. If I could choose to live to 50 and have a great time, I would, rather than living in a bubble and making it to 70 or 80. Everybody has a vice...
Source: Cystic Fibrosis Adults Forum - March 28, 2011 Category: Respiratory Medicine Authors: 2DIE4Corey Source Type: forums

Personality
This is actually something I think about quite often. There is so much I ponder about what I feel and what SHOULD I feel to be happiest and to be the best person, really too much to cover in a single post, I'm sure I'm going to leave something out. I would say I am a nice person, I do get snippy with people, usually just my close family, but who doesn't have tiffs with those they live with? I joke around and try to break any tension I can with a joke, sometimes in situations that don't call for it even (funerals for example) People see me as a nice person, and often I wonder how much of that is because they know I'm sick...
Source: Cystic Fibrosis Adults Forum - March 28, 2011 Category: Respiratory Medicine Authors: nocode Source Type: forums

RELATIONSHIPS
@nocode: yeah u do it the same way i do. i let ppl know that its a lungproblem, which let me havin pneumonia one time a year and that my immune system is weaker than from "normal" people... this works really good. And regarding life expectancy... its a foreign word for me, cause u know a sane person or we can cross the street, get hited by a car and can die. So I dont think how old I will get or could get. And nobody has the right to say: you will become this and that age... and like u said, use it as a trump card, u r definitely right, cause ppl look really shocked, when they hear what u have to, takin meds, inhalations...
Source: Cystic Fibrosis Adults Forum - March 28, 2011 Category: Respiratory Medicine Authors: 2DIE4Corey Source Type: forums

Hospital Indemnity Policy for CFers
Hell, I would have broken their banks if I had that policy the last time I was in! I was hospitalized for 5 weeks in the ICU back in Nov....That would have been have been some serious change. I am definitely looking into these policies. Thanks for the heads up, Jenn
Source: Cystic Fibrosis Adults Forum - March 28, 2011 Category: Respiratory Medicine Authors: julie Source Type: forums

Great Strides Video
Thanks guys!
Source: Cystic Fibrosis Families Forum - March 28, 2011 Category: Respiratory Medicine Authors: TonyaH Source Type: forums

Scared and Confused
Originally posted by: mom22 So if a sweat test isn't 100% why don't they just order the genetic test to start with? Should we be pushing for that instead? comprehensive genetic testing is expensive. Panel testing is not that bad but it will not rule out CF b/c it only tests for a handful of most common mutations. They do sweat test b/c if it is positive, CF diagnosis is confirmed and there is no need to test further for CF.
Source: Cystic Fibrosis Families Forum - March 28, 2011 Category: Respiratory Medicine Authors: mom22 Source Type: forums

Anyone else having a tough time with their CF'er?
hello. the problem is, that everyone who suffers from CF, thinks on one day, why me, i am rid of it and stuff like that. the older your kid get, the easier it will be. He has to understand, that its good for him what he has to do. I didnt make it easy for my parents as well. Now I am 25 and deal with CF since 25 years. greetings from Austria!Delia!
Source: Cystic Fibrosis Families Forum - March 28, 2011 Category: Respiratory Medicine Authors: Jimmya Source Type: forums

Problems with Enzymes
Hi, I am a new mom on twin boys. Both who have CF. We were not expecting this news at all, it was a totally shock when we found out during our pregnancy. One son Cayson has done awesome he takes his enzymes everyday every meal and is growing and gaining weight like a champ. Colton my other son is still in the hospital where he has been since he was born (over 2 months ago). My question is, when they were getting ready to send Colton home he started having some bloody stool. The doctors say it is from his enzyme so they stopped giving it to me. An the stools got better. Have any of you experienced this?
Source: Cystic Fibrosis Families Forum - March 28, 2011 Category: Respiratory Medicine Authors: bmurphy8655 Source Type: forums

Diagnosed with 3 months (of age)
anybody else, who have known this diagnose since birth? I think they made a sweating test as well, 25 years ago. I was born with pneumonia & one night concluded that I am alive now.
Source: Cystic Fibrosis Diagnosis Forum - March 28, 2011 Category: Respiratory Medicine Authors: 2DIE4Corey Source Type: forums

Prograf Dose
I have been on all doses and combination doses at some point or another. Your lab work is checked regularly and especially in the first 6 months or so your dosages may change every few weeks. It is a matter of what level your docs want you at and how you are absorbing the medication. Lindsey
Source: Cystic Fibrosis Transplants Forum - March 28, 2011 Category: Respiratory Medicine Authors: Ldude916 Source Type: forums

Anyone else ever experience intussusception?
I had one when I was eight years old which required surgery. I barely remember it, except I couldn't go out for recess because I was doubled over at my desk inside. That is how they discovered that I had CF. Granted this is over 30 years ago, but the explanation we got at that time was because I didn't digest fats (and didn't take any enzymes 'cause nobody knew I had CF) the undigested "stuff" built up and caused the intestine to back up into itself. Don't know if that medical view still holds today -
Source: Cystic Fibrosis Adults Forum - March 28, 2011 Category: Respiratory Medicine Authors: lovexlacie Source Type: forums

Symtoms of CF or something else???
When I had excessive thirst and dizziness it was because of CFRD or Cystic Fibrosis Related Diabetes and I was just getting sick all the time from unknowingly having it. Hopefully that isn't it though in her case. Best of luck to your daughter, I will pray for her
Source: Cystic Fibrosis Families Forum - March 28, 2011 Category: Respiratory Medicine Authors: MommaKas Source Type: forums

Anyone having trouble with their hospital
Let me start by saying hi to all! I am a father of an 11yo boy with fairly severe CF, recently we have been hospitalized 3 times in the last 10 months. I have become increasingly irritated with the staff, including doctors, respiratory techs, phlebotomist, and housekeeping not adhering to infection control protocols. They have not been gowning, gloving up, using hand sanitizers, washing hands, or using a dedicated stethoscope as dictated by infection control protocols when entering the room! On our last two visits I have made complaints concerning these matters and here we are again facing the same i...
Source: Cystic Fibrosis In The Hospital Forum - March 28, 2011 Category: Respiratory Medicine Authors: Jimmya Source Type: forums

Approved For SSDI
Hello everyone. Sorry to jump into this threat to ask this, but it seemed like the most relevant topic for me to ask my questions. This question is for anyone who has been approved for SSDI. I recently left my job because of the demands it was taking on my health. In less than a year my baseline FEV1 fell 10%. I have just started the process of applying for SSD and have my interview coming up shortly. I have a few questions and would be so grateful to anyone receiving SSDI who would answer my questions. 1. How many times did you have to apply/appeal to receive SSDI? If you were denied, did they give you a reason? 2. Is the...
Source: Cystic Fibrosis Adults Forum - March 27, 2011 Category: Respiratory Medicine Authors: JennifersHope Source Type: forums

prednisone and CFRD
Tiffany was on and off prednisone constantly -- at times it seemed to do more to control her breathing issues than other treatments. Last year she was on it almost the entire year and would have the big swings in her numbers as well. She would reduce her carb to unit ratio and then dose accordingly making adjustments to keep the sugars in line which meant that at times she was on a whole lot more insulin than at other times. Prednisone does crazy things to your numbers but don't be discouraged by it as it is par for the course and you just keep making adjustments in your insulin to bring it under control. I know one thing ...
Source: Cystic Fibrosis Adults Forum - March 27, 2011 Category: Respiratory Medicine Authors: ej0820 Source Type: forums

bactrim
we usually use it for 10 days, if my dd is in the middle of some flu or something then it is extended to 2 wks, but for us the standard is 10 days.
Source: Cystic Fibrosis Families Forum - March 27, 2011 Category: Respiratory Medicine Authors: mom2owen Source Type: forums

Antibiotics while pregnant?
Hello there. I am new on that page & also an CF patient. Its good to know that there are so many of us, out there. I am from Austria. Greetings, Delia!!
Source: Cystic Fibrosis Pregnancy Forum - March 27, 2011 Category: Respiratory Medicine Authors: marisalynn Source Type: forums

To HTS or not
Are you on open label now and actually taking the study drug or are you, as your lung function declines (even if just a little) potentially still on the placebo? I do think that the integrity of the trial process would be better preserved by trying not to resume a treatment you are pretty certain will change your health- since you will know any improvement won't be due to the study drug (assuming you are on the study drug and not a placebo.) However, while that is beneficial to the integrity of the trial process and overall accuracy of the results, it's not necessarily going to be good for YOU. How much longer is the tri...
Source: Cystic Fibrosis Adults Forum - March 27, 2011 Category: Respiratory Medicine Authors: Jeana Source Type: forums

enzyme dosing for infant
We are on creon, not zenpep, but our docs are very careful about not going over the recommended dosage. Maybe it's different with zenpep. I would say before increasing enzymes, did they try adding an antacid? They added zantac to help with the absorption when we started having issues. Also, I'm not sure how you administer the enzymes, but we've found that giving them before, during, after (before/after, before/during) sometimes helps with the absorption as well. I would check with your docs, and if those methods fail, start by increasing half an enzyme, which I know is a pain to measure out. Anyways, good luck to you.
Source: Cystic Fibrosis Families Forum - March 27, 2011 Category: Respiratory Medicine Authors: momtocrazel Source Type: forums

Anyone having trouble with their hospital
Let me start by saying hi to all! I am a father of an 11yo boy with fairly severe CF, recently we have been hospitalized 3 times in the last 10 months. I have become increasingly irritated with the staff, including doctors, respiratory techs, phlebotomist, and housekeeping not adhering to infection control protocols. They have not been gowning, gloving up, using hand sanitizers, washing hands, or using a dedicated stethoscope as dictated by infection control protocols when entering the room! On our last two visits I have made complaints concerning these matters and here we are again facing the same issues! It has become s...
Source: Cystic Fibrosis In The Hospital Forum - March 27, 2011 Category: Respiratory Medicine Authors: Jimmya Source Type: forums

Antacid
I take famitodine (pepcid) once a day. But make sure you take a b complex vitamin apart from the ant-acid, as PPI's can negate the function of B vitamins. That's why you hear of hair loss and lack of energy, etc with their use.
Source: Cystic Fibrosis Adults Forum - March 26, 2011 Category: Respiratory Medicine Authors: mamerth Source Type: forums

neb for HTS? - one more question
I use the Pari LC plus. HTS is the only inhaled medicine that I take, and I credit my continued use of HTS that has enabled me to be hospital-free since 2008!
Source: Cystic Fibrosis Adults Forum - March 26, 2011 Category: Respiratory Medicine Authors: rubyroselee Source Type: forums

cholesterol issues and CF?
Pancreatic sufficient here, but noting that I can't eat some fats (bacon or pepperoni) w/o having diarrhea. I am on the thin side. And have had a cholesterol level ranging btw 220 and 250 since it was first checked in my early twenties. My good cholesterol is still adequate such that no one is telling me I need Lipitor yet. I try to make at least two dinners a week of rice and beans or rice and fish. I also eat dinner leftovers for lunch instead of junk, but I won't lie, I eats lots of cheese, put half and half in my coffee, butter on my toast, and eat red meat, dark chicken meat and eggs. What I do avoid if I can help it ...
Source: Cystic Fibrosis Adults Forum - March 26, 2011 Category: Respiratory Medicine Authors: Mommafirst Source Type: forums

what have you used to treat mrsa
I get treated with IV Vancomycin and oral Zyvox or Bactrim. I've cultured MRSA for several years and continue to culture it, so they haven't gotten rid of the MRSA. But they do keep it under control fairly well. I've never heard of fusidic acid. ~Aimee, 28 w/ CF (PA & MRSA)
Source: Cystic Fibrosis Adults Forum - March 26, 2011 Category: Respiratory Medicine Authors: age Source Type: forums

update on my admission
yuck!!! I'm so sorry you have to go through the picc insertion again! But I hope this time does the trick. I'm thinking positive thoughts for you, girl!
Source: Cystic Fibrosis Adults Forum - March 26, 2011 Category: Respiratory Medicine Authors: MCGrad2006 Source Type: forums

Help with Bipap Mask??
My daughters were closed . Our biggest battle was with because it was a full face mask one doctor insisted she had to go into ICU becasue of it. The next day her CF doctor and social worker came on the floor and set the resident straight. However the resident of course terrified everyone. If you have a RT you feel knows their stuff that comes in I would discuss in detail with that one or an RT supervisor or the doctor. We had 3 good RT that knew their stuff and one that would always act like they knew and argue when we got that one my daughter would throw them out and find out who the supe was on that night and make him co...
Source: Cystic Fibrosis Adults Forum - March 26, 2011 Category: Respiratory Medicine Authors: BlissingOut Source Type: forums

PICC problems?
Its likely that its not a major collapsed lung, but it could be a small one, or some other complication. I've found that cfers can sometimes present problems in very different ways. I've had 3 emergency situations, all with strange pain-once my appendix was so inflamed about to burst, and they caught it in time; once with pain from a kidney that was so badly inflammed it was shutting down, and once with gallbladder problems. The thing is, I hemmed and hawed each time about not going to the hospital bc the pain really wasn't that bad. But each time, it was good that I did go bc the problem could have been much worse if I ra...
Source: Cystic Fibrosis Adults Forum - March 26, 2011 Category: Respiratory Medicine Authors: sue35 Source Type: forums

Those who fake having CF :(
Thanks for all of the replies. I have been feeling really childish letting this upset me so much, but your responses make me feel better about the way I'm feeling. No, this girl is not member here. At least I don't think she is. Reporting this to the moderators is a good idea. That way it is out of my hands and can be dealt with correctly. It just makes me so MAD!
Source: Cystic Fibrosis Adults Forum - March 26, 2011 Category: Respiratory Medicine Authors: TonyaH Source Type: forums