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I'm 33yrs old and was just diagnosed w/ cf & I am lost.

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Posted 6/5/2005 1:49 AM (GMT 0)

confused   confused   confused

I have couple of questions for anyone who know please:

1st: They have suggest a lung transplant is this a good idea or not?

2nd: I have been in the hospital 3 time sense I was diagnosed 3
months ago, is this normal?
3rd: Is there anyone else out there who was diagnosed as an adult and
if so how often do you visit the hospital?
4th I just got the Vest does anyone have any pointers for me?


confused   confused confused

Posted 6/12/2005 2:23 PM (GMT 0)
Make sure you go to a cf doctor and get the correct medications you need and dont wast any time...if they say you need a lung transplant already you must have significant lung issues.. There is hope and things can turn around for you but dont delay. REad all you can about cf and remember information changes daily, that is how fast the cf world is working to irradicate cf in our live time....
Posted 7/11/2005 3:24 PM (GMT 0)
First, have they genotyped you?  How did they decide that you have CF?

The decision to get a lung tranplant is a major one.  It is a decision that you must make with your doctors.  You have to decide if you can handle the post-op meds and make sure that you have an adequate support system, such as parents, friends, or a significant other.  We are starting to consider this as an option and our doctor said that I will have to take about 6 weeks off from work to take care of my husband after the surgery.   

If you keep going in and out of the hospital it sound like they aren't keeping you in long enough in the first place.  When my husband goes in, he is there for at least 10 days and up to three weeks.  They let him go when his lung function tests indicate that he is well enough to leave.  Also, many of the problems with CF are the result of a bacterial infection.  Make sure that your doctors have cultured you sputum and determined which antibiotics work.  Over time they will become resistant to antibiotics.  You also need to be on anti-inflammatory medication and something to break up the junk in your lungs.   

Regarding the vest, my hubby says that it doesn't really work and that it just makes him sick to his stomach.  There are different vests on the market and I'm sure there are some that fit better.  The other issue is that he has a port, so the vest rubs up against it. 

Anyway, I hope that helps.

-A.

Posted 8/3/2005 3:15 AM (GMT 0)
Hi,

My husband has had cf since birth, however, he just recently became listed for a lung transplant. My advise to you, if you do decide that a transplant is in your future and you have the time, is to investigate several transplant centers before you have choose. we visited 3 centers before my husband choose the one he felt most comfortable with. Each center was very different. This is a major decision, so find the best care possible. Also, are your doctors aware that the guidelines for listing for transplant have recently changed. Up until this spring, lung transplants were done on a first come, first serve basis so listing early was important because you needed to accure time on the list. However, it has change to a need based formula so lungs are going to the sickest first. Read as much as you can about CF and lung transplant before making this decision. There is a book about lung transplants (all transplants not just CF related transplants) which I believe is call, The Lung Transplant Handbook. It is extremely informative.

My husband also hates the vest. He perfers the flutter devise and exercise.

Hope this helps :)
Posted 8/4/2005 2:07 PM (GMT 0)
hi there,

i was diagnosed when i was 7 weeks old and i'm now 16. From what i've been told, it is fairly normal for CF sufferers to go into hospital, however, it all depends on how bad your CF is. Luckily for me, I have not had to go into hospital frequently as I have kept myself in a good condition. I have met very few CF sufferers, some of which are admitted to hospital every month or so. If you keep heatly then hospital should not be a worry.

Chris

Posted 8/4/2005 2:10 PM (GMT 0)
in addition to my last post,

a lung transplant can be a good idea but it is a hard decision to make, you need to find out survival rates and if your CF is not too bad i would wait for the gene therapy that is being introduced in the near future.
Posted 9/18/2005 9:26 AM (GMT 0)
I can only help with your 3rd question, I was diagnosed at 35, I'm 40 now, I'm a disabled vet so I go to the va about once every 2 months or so for tests unless I have problems and then I go more often. Hang in there, do what the doctors say, I live a pretty normal life. Richard

Posted 9/20/2005 5:52 AM (GMT 0)
helllo there... names olivia im 18 with c.f and i was diagnosed at 12... since i been diasgnosed i have i have been in the hospital 3 or 4 times... and they r mostly just for "tune ups" i have 98% of my lungs.... i think the only time they say for a transplant is if u have 25% or lower.
Posted 12/13/2005 1:25 AM (GMT 0)
hi sawoods,

i am 37 yrs. old (female) & was not diagnosed until i was 31. i have been hospitalized three times in the last four & a half years, but have had two rounds of at home anti-biotics in addition to that. i have the vest & love it! wear a thick shirt, or else it gets itchy. i also feel calmer & more prone to use it if i have a good book/magazine to read (a little shaky, buy do-able). it is too loud to watch tv. i like the vest since it gives me autonomy to do the chest physio-therapy by myself.
i don't have any advice on lung transplantation, i've been told my lungs are too healthy to be considered. which i'm extremely grateful for.
with this disease, it is not necessarily a bad thing to be in the hospital a lot. it means you're getting the medical attention you need.
Posted 12/13/2005 11:55 PM (GMT 0)
Hi, just to throw my two bits in here. If you pick up a nice pair of headphones you can watch tv while vesting. I was warned to keep my lungs as good as possible for as long as possible, a lung transplant isn't a cure and the CF comes back. Add in the imuno suppresants that go afterwards and its not really a surprise that once the CF sets back into the new lungs the host doesnt really last long after that.

Not cool. But it is important to have your physio therapy (vest or otherwise) at least twice daily - or more often if prescribed - OR If you feel you need it more often then have it - nothing that says that we can only have it as much as the doctors say. I'm not saying they're wrong but they aren't living with your CF & feeling how you feel. If you need more physio, have it! If you still feel sick, do another sputum test, get the information you need to get on the right treatments.

If your enzymes aren't working, find other ones! After fighting for ages we finally figured out that I had to take the old Pancrease enzymes - it was the only kind that worked and didn't give me the runs. Every time I go back the doctors propose changing them, I've tried different meds on two seperate occsions and I've had nothing but problems. Once you find something that works, stay with it!

Example, I have a chronic staph infection. I'd been fighting it at a +4 level for the past 4 years. The weird part of this is that the tests said it was sensative to Cloxacillin. Every time, for 4 years its said sensitve. But not once has clox done the trick. Finally a good run of Keflex and I'm finally feeling like a real person! Just be persistant. :)
Posted 1/7/2006 12:03 AM (GMT 0)
i dont know much about a transplant (having one) or being diagnosed later in life ( I was dagnosed at6 months) now 14 yrs) 

one thing that i do know is i know a lot about the vest.  I HATE IT, but its one of those things that i have to do.

--use the highest frequency... even if its higher than wat your Dr wants you to.  it wont hurt you

--do more time than necessary. I know its hard, but it may help

--ask your Dr. about nebulizer treatments.  Mention Albuterol, first of all.  Advair, secondly.  Albuterol  thins out the mucus secretions in your lungs and helps you breathe.  Advair is a long lasting broncho Diolator.  which means that it makes your bronchial tubes diolate so it helps you breathe. (Albuterol is also a broncho diolator... your Dr. will be able to tell you more.

I hope this helps

Good luck

Posted 3/14/2006 10:12 AM (GMT 0)
I don't mean to sound rude, but you are VERY lucky as far as CF goes. I was diagnosed shortly after I was born, and I am 18 yrs old now. I go in the hospital several times a year, usually 4-5, 6-7 if I've been smoking pot. You have already lived longer than the current life expectancy of a CF patient (31 years), and you have not had to suffer through adolescence with the disease. I understand that you are upset by the diagnosis, but you really don't have much room to complain. I can feel my lungs degrading as the years progress, and although I am doing better than the majority of CF patients at my age, I still don't expect to live to your current age. If you were just diagnosed, you do NOT have it too bad. I too have a vest, and I absolutely hate it. Not because it's something that my CF has forced me to do, but just because out of all the methods of therapy, this is definately the most annoying, irritating, and because of how much the machine weighs, difficult as well. You should ask your doctor about the flutter. I think you will find that a MUCH better alternative: it is just a handheld device that you blow into, it weighs less than a pound and is small enough to fit in your pocket. Try that with the vest. I'm sorry if I come across as rude, it just makes me very upset that I have had to go through school, puberty, dating, and life in general with this disease, when I hear about people who are so much luckier than I am. I'm not angry at you or any person in general, I am mad at God for my relative misfortune. As I said, you were diagnosed with the disease at an age that is AFTER the current life expectancy of patients with CF. I do wish you the best of luck with it, and I will go ahead and tell you that you do need to get used to the hospital visits, and be ready to be on a lot of medicines and antibiotics over the course of your life. On the bright side, however, you will probably not have to worry about being overweight :)
Posted 3/14/2006 10:17 AM (GMT 0)
I forgot about the lung transplant thing. You most likely don't have to worry about that. They start to consider a lung transplant when your Pulmonary Function tests consistantly score around or below 30%. If that is a real concern, however, you HAVE to take excellent care of yourself, or else when the time comes that you need one, they won't consider you for it.
Posted 3/16/2006 5:30 AM (GMT 0)

Wow 33 and just diagnoised. You should feel so lucky. i only hope to see that day. hi im 22 yrs old, i was diagnoised with asthma at the age of 10 and told i only had asthma. my sister died with cf at the age of 9 and my aunt died of cf at the age of 27. i dont know much about lung transplants but if you get one it adds 5 yrs to your life. my lungs are deterioating and they are expecting for me to get one in like 5 years. however they told me recently that they dont see me making it to 30. i was diagnoised with Cf about 7 months ago. i dont have asthma. its been cf all along. so i wasnt being treated right. as a result in this, i now have cepacia,pancreatic insuffiency(which they are talking about tubes now), my liver is starting to go and im now on oxygen at night, im barly holding 100 lbs. a year ago i weighed 140. i take 10 pancreas mt 16 with each meal,a lot of inhalers,a nebulizer(duoneb 4 x a day and albuterol 6 x a day),i have a son so i need to make my will soon,however,i know i wont make it much longer,i wont live as long as you have, but i dont like to think about dying. im not ready for it. i take about 15 differnt medications a day. it sucks having cf. but there are worse diseases out there. AS for the vest. i just recently starting it,its a bit of a hassel so i skip it sometimes. i do not like it.  i dont know what kind of help or advice i can give you but to hang in there and always prepare yourself for the worst. thats what i learned the hard way. i never thought i had cf. i thought it was just asthma. very serious asthma. surprise and now they think my son might have it too. :>( god i hope not. i love my son. hes only 2. i feel very fortune to live this long. i watched it kill my sisiter, she didnt even make it to 10. Anyways i wish ya well,get all the info you can while you have your strength.

Good luck to you

Tricia

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