Hi all! We are back from vacation and the 12 hour car ride was quite a challenge. Baby girl is coughing more frequently now. I think sitting still in the car could be part of it?? We took breaks and let her move around, did all the pats and treatments as usual. I think the ocean was good for her, but maybe flying would be better next time. Any one find long car rides cause problems with breathing? Im ready for these little ones of ours to be back to normal! I do wish a cough could just be a cough, a sneeze just a sneeze and nothing to worry over!! I think Im on the pity pot thinking about how much easier it was with my son who doesnt have CF. Let me tell you, I didnt know how blessed I was to have a healthy baby. I dont take it for granted now. I just wish my daughter was as fortunate. Everything happens for a reason, but it sure is tough. Sometimes I could just scream! Id like to wake up tomorrow and hear there was a cure. I know all of you would too. I think of you when Im doing pats, giving meds, saying prayers. Knowing you are all doing the same stuff I do every day helps me remember we arent alone. Sorry for whining, every now and then I need to wring myself out. Take care you strong ladies.
We've never been on that long of a car ride before, though have done a round trip to the clinic 3 1/2 hours each way in one day before. We've nebbed tobi in the car -- done cpt and duo neb prior to heading out.
We've flown a few times. Made sure all the meds and equipment is carry-on.
When DS was a baby, I had similar worries, thoughts. Wish that he didn't have CF so I could've just enjoyed his baby milestones instead of worrying all the time. But he does, so what choice do we have.
Well, I fly alot more then drive anywhere but I have driven many times on 3-5 day trips with my parents to Newfoundland, and I dont find a difference in the car then a do on an airplane. If anything, I find the airplane more of a hassle because all my meds & nebulizer gets look at like Im a drug addict, then I have to produce travel letters so they dont take me to custody. lol. Its quite the flying experience. I have flown enough times. But the previous message is right, I mean I always make sure meds are carrying on, because if they lose it, my life is literally gone with it, I am lost without my medication. I also have diabetes too, so try getting on to an airplane when they see needles through the x-ray machine hahaha.... anyways
dont worry, you will here a cough every once in a while that sounds abnormal and soon enough you'll be so used to it that you will know whats good and what isnt.
I cant tell you Taylor33, whats its like from a parent point of view, but just dont worry. Your child will have days where you think the worst then you will have days where it seems as if she doesnt even have CF. Be very happy now, because when the teen years come, thats when rebellion comes and neglection. Every teen hates being different, and I went through that stage, and really you can only learn from your mistakes. If rebellion every happens, the only thing that will cure her is sickness, I got really sick, and then I realized neglection wont make it go away, nothing will, just work with it, and it works with you.
I do have a question for you though? Have you ever had your son tested for the carrier gene? I have one sibling and she does not even have the carrier gene. Its quite weird how those genes work.
Thanks for the info and encouragement. I know you are right about the rebelious stage that could be ahead. I dont know if you read my blog about my sisters friend who had CF. She tried getting healthy after she went a little wild, but it was too late, very sad.
My son has only had the sweat test so far. I was scared about just trusting that test, but he scored a 7 so I feel pretty confident that he is only a carrier if anything. I do plan to have him and my step son tested genetically by the time they are teens. They need to know if they are carriers before they even think about having kids of thier own.
Im hoping it gets easier to accept. For some reason its just been harder here lately... we're nine months into it, her first birthday is approaching. I guess I just still cant believe this is really happening to us. But who am I to think I would sail through life with no major heartbreaks or worries? Im just hoping to learn how to focus more on how beautiful and precious she is instead of what will happen tomorrow and the next day.
I really need to get my mom on here, GEEZ you would feel relieved when you hear her horror stories about me. I was in the hospital for about 4 to 5 months after I was born, with no meds, no maskings, no therapy, I was sick because they DIDNT EVEN KNOW WHAT I HAD. I was the first child in Newfoundland to ever have CF. I was in the paper
Your such a worry wart. haha I am 100% sure she/everything is going to be okay. Shes so small, so I understand, not only do you have to do the parenting part, but now you have you be extra caring due to the fact she has CF. Things get better as the grow. I was born in 1986, and think about the technology and how much it has advanced since then. SOOOOOOO much. I am thankful every year, that I have aged one more year, and thank God that I am still alive. My birthday is coming soon too, Sept 17th Im turning 22. I still worry about my health,but I dont get down about it.
The way I look at things is that there is always reason for everything. The fact that is was CF that I got, not so lucky, but I could only thing where I would be at if I didnt have it. Probably smoking, YUCK!, and I wouldnt be so happy with what I have accomplished in life. Well, it isnt much, but to begin I have been to college already, and I have started an amazing career and I am only very young. Thats the positive thing about it, I knew that if my life expectancy was only 30-35 (probably more for CFer's now) I needed to get started on my life ASAP, so thats what I did, its very hard but it makes you start everything 10 years earlier. A career, babies, life, you grow up extremely fast.
Depression is (i believe)a huge factor with CF. I think because it feels like you are all alone and you are the only one stuck with all these medications and no one else has to do them, or deal with the situations you deal with... and blah blah, I totally encourage support. The best thing I LOVED about having support was my mom & dad, everyone around me. I always had my mom there, so if I didnt like the nurse taking my blood, my mom could speak up, or my dad.
Do you have anything called Disability where you live? Like Government funded programs for when your daughter gets older? For example its a kind of support on those times where she may be working and living alone, but for 2 weeks out of the month shes sick and cannot pay rent or barely getting by the government would help her with money? its a continous program and its extremely helpful. Do you have that? Get back to me, and Ill explain more.
Last edited by toomuchdetails; 08-11-2008 at 10:10 PM.
Hi all. It's so weird when I ready your first post here Taylor33, because I am exactly in the same place right now too. we are 5 months down the line with our new life post diagnosis and the last few days I feel more upset now than when I first found out somehow. Your message was lovely I thought - making reference to the fact that you think of the rest of us - cfers and moms and dads of cfers who are in the same daily process and how supportive it is to remember that - its something I hadn't thought of and I will remember it from now on. I've felt down about it all the last few days too - just the fact that its always there in my head, the worry, the doubleguessing of what is or could be wrong and yes, that feeling of why, why, bloody why??! but then, I do also think, well why not, there are lots of things that can go wrong with life and people and all in all, we're still lucky, got a gorgeous daughter and a nice life an we're strong enough to deal with it, and yes I still hope for the cure too. well, I'd like to finish up with some inspiring words for us all, but all I can come up with now is chin up! and I'm with you all too in spirit. there are so many people who have different things to deal with in their lives, and all in all, things are getting better & better all the time! apologies for the slight garbling in this message, I'm tired, pms ish and emotional!!
I think I am PMS ish too Irishmom. That always makes things worse doesnt it?This may or may not come as surprise toomuchdetails, but I have been called a worry wart a few times before Wow that is something about you being the first to have CF in Newfounland. I bet your parents are very proud of how smart you have been about handling your life. I do appreciate your upbeat attitude also. Hope my girl will be that way too.
We do have disability benefits in the US. The social worker at the clinic told me that she will be eligible as an adult. I tried applying for social security benefits for her now, but she is not in pain or disabled by CF so she isnt eligible. I hope she never is if that is what it takes! I did hear that you have to keep applying for it over and over to recieve it.
We go to clinic tomorrow, and that always makes me realize just how blessed we are to just be dealing with CF. I have seen children with severly deformed faces, brain damage, and so on. I call it the place where the minority become the majority. It is quite humbling.
yea we are very lucky as I would say. More lucky then alot of people, I am not in a wheelchair and I am not physically disabled so, I am happy with where God put me.
Well the way it works in Ontario CA, it doesnt matter whether your disabled by CF or not but as it adult it gets harder and harder to work full time, just because working 8 hours a day at 5 days a week is tiring for any adult, but add that work to a body that is working overtime to try and cure a disease 24/7. I dont always get a full night rest due to the coughing and its very disruptive so it may or may not keep we awake most nights. This can also disrupt the working schedule. I applied for the disability when I was 16 years old, the government in Ontario is extremely helpful because if I am living on my own and working, I can recieve enough to pay my rent, so the extra money I make goes towards my groceries or things I need. I am so happy they offer diability support where you live, its such a positive to our negative we have been given.
Well, keep in touch and I hope all went well at the CF appointment. I hope your daughter is doing very well, and talk to you soon. Any questions feel free to ask, I would love to share my thoughts or help to you.
Doctor said her lungs sound awesome. Her oxygen level is at 99%. I am so thankful! I do have a question for you all. How often are you or your little ones cultured? Our doc told us that in Europe they are culturing once a month. Here we only do it every three months, at least that is all that insurance will cover. My hubby and I are thinking of having it done on a monthly basis just for the sake of our sanity. I think being as aggressive as possible is the right way to go, so hooray for Europe!
I am so glad you are getting that much deserved extra help toomuchdetails. The interesting thing about every person with cf I have known is that they want to work and be productive. We have people here on disabiltiy who quite frankly could be working but are just lazy. It is refreshing to see people who actualy need it get it. I have a cousin with Crohns disease who has been waiting for two years to recieve benefits.
Well I hope all is well with you all. Is your little one over her cold Irishmom?
Thats amazing. Im happy she is still doing very well.. Good for her little lungs Honestly, here in Ontario I only get cultured once a year. I do not worry though. Are you referring to Pseudo? If so, it will not hit her that young, but reading your reply shows that you need that information to stay sane, then I would keep with the every three months, not only that Taylor33 you would notice a huge change in the health of your little one and know that something is wrong right away if Pseudo was the case.
In regards to the working, yea I need that to keep my sanity, I cant stay at home all day and do nothing just to make a buck. As long as I can do it, I will be making the extra I need, then when I am older, maybe not work so much and focus more on my health when it is really needed. By then I figure I will have all the things I worked for paid off, so then I can relax. A very close friend of my spouse has crohn's as well and he is struggling to get disability as well and he is quite sicker then me, and I feel for him, because he deserves a break as well. Its horrifying the government now a days.
To be honest, I would worry but not worry, its so hard to say. Your ddaughter sounds in great health. Im 21 and my lung capacity is still 75-80% so it has not declined by much. I dont feel the difference from when I was 16-17 so... I dont worry about it. I really dont even think about it to be honest, I just live day to day and do what I can do.
Well hope all is well.. talk to you again soon...
keep in touch everyone
I believe here in the states the CFF recommends having cultures done every 4 month. At least that's based on the clinic rating system for the accredittated centers. Our doctor does cultures at each visit, which is twice a year.
And I hate to be the bearer of bad news -- gloom and doom... But pseudo can be cultured at any time. DS first cultured non-mucoid at age 3 months. And he cultures it off and on and has been on tobi nebs since that time When DS was first diagnosed people (clinicians) would tell us about pseudo, but go on to say that would be something we MIGHT deal with when DS was older. Unfortunately older meant two months later...
Yes, I have heard that some are eighteen and have never had pseudo and then others get it young. I was also surprised to hear that people can have pseudo and show no symptoms, that is what our doc said just this last visit. Thats why I really dont want to do the three month wait. Honestly though, it may or may not make a big difference whether it is caught a bit earlier or not. Doctor said it was an "interesting" question on whether or not we should be culturing every month.
Ratatosk, if you dont mind me asking, does your son seem to feel good most of the time? I guess what I mean is, do you feel that pseudo has altered his health in any way? Im sure doing Tobi makes a big difference.
That is great that your lung function is so strong toomuchdetails. I have heard that there are babies in the 40's so it is a BIG deal to have those high numbers.
yea, my lung capacity is very good. Its very important to start exercising at a young age, it wasnt encouraged when I was younger so as soon as I found out how important it is and what benefits it has I started. I have worked very hard, its get agrivating when its a life time commitment to exercising but its worth it in the long run, I tell myself that everytime I step on a treadmill. I have my months where I feel completely down and there is no one and nothing that can make me feel any better.
I have had no signs of Pseudo when is very good. The CF clinic trys to get cultures every three months, but sometimes its every year I do "special testing" so they can determine all my stats. I asked my doctor when I was at clinic recently what really makes us get Pseudo, and I also asked how can I be cautious, but she didnt really have an answer. We said the docs really figure aLL people with CF will get it eventually, but the time is really not determined.
What symptoms does Pseudo have once it is diagnosed? How does the health change of the person who has it? If there are any symptoms prior, what are they? I just want to know, so I can look out if I see any major change in my own personal health. Is there more infections? Also... does your son use Pulmozyne? Has he ever? Sorry Im so nosy, but I really like learning about others who have CF as well, it keeps me in my toes, and helps me learn more about the illness and how it affects everyone differently.
Hey all. delighted to hear about your good clinic results Taylor33. its such a relief isn't it? when you say cultured - do you mean a cough swab where they take a sample from the back of the throat to see what/if any bugs are growing? if so, then we get it done supposedly at every clinic - i.e. every 3 months. we could request it to be done at any time we were concerned - they are very amenable in that regard, but the last time we were in because she was in such good health, they said there was no need to do one - i remember I was both relieved and disappointed. after the fact, i think I felt I ought have asked for one to be done regardless just to be proactive, empowered and in control!! anyway, yes thanks she's over her cold and in great form. my sis is home from canada at the moment so its great to have her around. we're doing all the stuff that I can't get round to myself and I feel a bit more in control of the chaos that has ensued over the past few months. we are also getting some work done on the house and its starts in a week - dreading the doing but looking forward to the finished model! anyway, all for now girls, take care.
DS rarely coughs. When he cultured pseudo, he had no symptoms. His first year, he did have a couple of sinus and ear infections. Being a new mom I thought the yellow boogery nose was a normal toddler issue; however, his doctor was concerned it could get into his lungs and put him on augmentin and it diseappeared. I'd often wondered if he maybe didn't have pseudo in his sinuses. But there've been other times he's cultured it and has shown no symptoms.
Yes, I did mean that back of the throat swabing. Im glad to hear your girl is all better Irishmom. It is wonderful when family comes to visit. I always try to catch up on cleaning then, rarely any time to do anything but keep up with dishes and laundry when its just me around.
Hey toomuchdetails, I have all those questions about pseudo too. All I have gotten was that it is in the "enviornment", drains, steamrooms, greenhouses, rotten fruit, plants. I got rid of every house plant I owned, if I throw away fruits or veggies I put them in a plastic bag and tie it in a knott before putting it in the trash. I try to pour bleach in our drains every once in a while for good measure. I dont know if it will help but it makes me feel better Now having said all of that, I still will let my daughter touch a pretty flower outside and smell it, it would break my heart to keep her from enjoying things that all girls do. I try to keep a balance with my caution. You are doing so well, so dont let my paranoid behavior influence you. This is all new to me, but you have a lifetime of experience with it and have managed to stay healthy. Ok, Bye for now all.
Pseudo is a bug that can live in water. So it's important that neb cups are properly washed/sterilized. I use ones that can be boiled, which I do after each treatment -- I have spares so I'm not boiling 3-4 times a day and then I shake out the water so they dry. DS plays at playgrounds, goes to swimming and gymnastics lessons. He can't live in a bubble, but I do try to avoid having him help me dig in the flower or veggie garden.
Im wondering if I should be doing that instead. I soak mine in bleach and let air dry. Im assuming bleach kills pseudo. I thought they sent some info on how to clean nebs when we brought her home. I must have lost it in the craziness. Im thinking the only thing I wont ever let her do is swim in a lake or pond or river or....he he