Working with cf

[anonymous]

I would like to know how many people hold down a full time job with CF. I am asking because I am in the middle of a court battle with my son's father. My son turned 18 in febuary and I wanted his father to continue to help me pay for his medical expenses. He is refusing stating that he is 18 and should work. a little background: My son was diagnosed at 4 weeks old. He has many pulmonary complications including asthma, abpa, b.cepacia. when on IV's he is usually on 5 antibiotics at one time. currently he is back in the hospital after only getting out 3 weeks ago.
On the non pulmonary side he has reoccuring kidney stones, cfrd,gerd.
I would love to have other people to compare to.
thank you

 

[cfgirl38]

I worked 50hrs a week up until March of 2004. My pft's went down to 48%. Then to 38%. But at the same time it was a very stressful time at work as they were downsizing and noone knew who was getting cut. So My health suffered for it. I've been off for almost a year and their slowly going up. Very slowly I might add. Why does your husband think just because he may get a job, he will get ins. with it. It usually takes a while. He should know better. Sorry your family is going through all that. Eva35wCF

 

[cfgirl38]

I'm sorry I should have said that each person is different as to extent of symptoms and just because I worked doesn't mean each person can. I had a very mild case of CF up until about a year ago. That is why I could work. but as I started developing other symptoms it was very difficult. It sound like your son needs to work on strengthening his health befor worrying about a job, which could make him worse. Eva

 

[anonymous]

Hiya

I am 19 with CF. I currently work 35 hours a week in a Call Centre. As it's office based my Cf doesn't really get in the way of it. I go on IV's approx every 2 weeks - if I am doing them at home I take the afternoon dose to work and use the first aid room, if I'm in hospital I get paid sick pay. I am tired at the end of the day, but I think that is the same as anyone else, I enjoy working as I am earning my own money and I like the fact that I won't let my health stop me. My FEV is currently 60% so perhaps in the future if it drops I'll have to work part-time.
Obviously, it depends on the type of job and what's involved but I think us CF'ers can hold down a job and do it just as well as anyone else!

Take care,

Siobhan

 

[anonymous]

Sorry I meant every 2 months not weeks!!!

Siobhan

 

[anonymous]

I work 40-45 hours a week and I love my job. I never ever miss (only for doctors and dentist appointments - I find I go to the dentist more than I do my CF doctor!) ... In fact, I've only been out sick one day since I started working there (about 6 months ago), and it wasn't even CF related, it was a 24 hour stomach virus that was going around.

However, I always end up feeling "guilty" every time I leave early for an appointment. Everyone else in the office is always there -they hardly ever have other things to do. And even when I do leave early in the afternoon for an appointment, I always make up my time. Yet, I always feel like I'm being watched.

Does anyone else have a similar problem?

 

[Jo20784]

Hiya i am 20 and i suffer with CF i dont work at all as my doctor will not allow me as i am to ill and find working very tiring but i might be allowed to work 10 hours aweek if my chest stays clear and my weight stays as it is . <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jaime]

I work 32 hours a week.

 

[Emmie]

I think everyone with CF is different in how it affects them. Personally I haven't worked for some years now (and even before that I could only manage part-time) because I am constantly exhausted. I do voluntary work in a charity shop for 3hrs on 2 afternoons a week, but by the end of it I'm so tired I have to sleep! My FEV1 is about 40% at the moment. Some people manage to work even whilst on the transplant list, others have much better lung functions but can't work at all. It sounds to me like the last thing your son can concentrate on at the moment is work...he needs to take good care of himself and concentrate on feeling better!

 

[anonymous]

Hello,

I am sorry to hear about your sons father, too bad he is to preoccupied with fighting with you to care about his sons wellbeing. I have several comments but will begin with answering your question. I have worked full time since I was 19. I began college at 17 to be a respiratory therapist, probably not the brightest career for someone susceptible to bacteria., so... I went back to school. While working 40 hours a week as a therapist I received 2 other degrees. Presently, I am an area manager for a company that provides oxygen and other home equipment and make a decent living.

I do IV's normally every 8-12 months and am fortunate enough to have a RN for a wife that helps with my care. I have not missed a day of work due to my disease in recent memory; I just work with my IV's in as do many others. With that being said, please keep in mind we are all different. I too have been diagnosed ABPA and GERD but I do not routinely culture any specific bacterium. Even though my FEV1 has decreased a great deal over the last several years I believe that I am one of the lucky ones and am more of the exception than the rule.

Recommendation:

If your son's health isn't good enough to work encourage him to enroll into a college or university. He only has to carry 12 hours to still be considered dependant. If your lawyer's worth a salt the law master will make your ex-husband auntie up. Not to mention your local state rehab should help foot the bill.


Luke Bailey, MBA RRT

 

[Starfall99]

I've been working 40 hours a week the last 2 years, and started taking 3 grad school classes last semester (which is actually kinda wearing me down, I may need to drop either a class or a shift). My case is kinda mild now, I responded really well to nebulized antibiotics many years ago and went from 2 or more tune ups a year to a tune up every 2-3 years (and next month will be 4 years since my last tune up, woohoo!).

I did NOT work while I was in college, my mother actually didn't want me to as she considered managing my CF to be enough of a full time job! Even without working the school schedule was a drain on my health, we noticed an improvement in the 2 years after I graduated that I was ONLY working without school -- and now that I'm back in school, and working this time so I can keep my health insurance, it's definitely more of a struggle to maintain my health. I'm fortunate that I'm able to keep up the busy pace, but not everyone can, and I'm also fully aware that eventually a time will likely come when I won't be able to handle a full time job (hopefully many years in the future!).

 

[Joblazer86]

I have worked full time since I was 15 but had to stop work last june b/c my fev's went down to 18%. I do have a severe case of cf but again everyone is different so I was able to work when I was in the 30's and 20's. Right now I am on disability and will be going to school next month. By this time next year I will probably be working full time again though!

 

[anonymous]

If your son gets sick that often i wouldnt recommend him working full time.....its a bad idea...sure he maybe able to do it for a while but his health will suffer in the long run. I know many cfers have said they can work....but some also said they had to quit or go part time. When i was in school full time (note i stress easy) my health suffered, had to be on ivs every few months...once I stopped school my health improved...I would think a job would create as much or more stress depending on the job and could hurt his health....also like someone if he is in school he is considered a dependant....BUT not everyone knows this and it may differ in other states but if he is considered disabled (cf qualifies you as disabled) he is also a dependant for as long as he is disabled.....making dear daddy auntie up. How do you get to be considered disabled.??? first you do not have to be wheelchair bound, any physical or mental illness that prevents you from doing ordinary things can qualify you as disabled....first go to his doctors with this issue....explain to him if daddy doesnt help with bills your sons health will decline because he wont have medical coverage (some doctors are easy to get to help out and some can be jerks)....they can write out a series of forms and letters to give to your lawyer....second i would consider getting him government help, medicaid or SSI...doing this they label you disabled and you take that form to the insurance company even lawyer and say "hey look the government and docs say he is disabled and (maybe shouldnt work) and that makes him a dependant and daddy should pay"
I hope some of this makes sense....but if all else try to convience the CF docs to write up the letters to give to the lawyer that it is vital for your sons survival to get medical help.
ab

 

[anonymous]

Ok, this is a little off the subject, but a little on it and might help out. Have you looked into disability benefits for your son? I could be wrong, but I have heard of childrens disability benefits just like there are SSD and SSI benefits for adults. If your son qualified for that, your ex's statement that "he should work" would NOT stand up in court.

Julie

 

[shamrock]

Hi my advice is get your sons doctor to write a letter outlining that due to having cf your son can not always work and needs to be able to have leave. So his father should contribute espicially since your son isnt over 21
Rosie<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Thank you everyone that has responded. Sorry it has been awhile since I replied back as Cory just returned from the hospital.
Cory is getting SSI, his doctor has already signed a letter for the insurance company stating that Cory is incapable of self support due to medical disability. Even with all this, it has still been a long case(over a year long). Now Cory's dad wants a medical expert! We have deposition his doctor. It has been frustrating. I think I wanted to know how many individuals worked because I was beginning to feel like I was wrong. Since Cory lung functions started declining and he cultured Cepacia, it has always been my priority for Cory to take care of his health. He has worked in the past and always end up sick. I have not encouraged him to work but with this constant battle with the lawyers has begun to make me even question my own judgement.
I hear many of you talk about medicaid? Where do I look into that. Right now Cory is still on insurance but his dad likes to play mind games(like keep us with out prescription insurance for a month). And I fear that one day, we will go to the doctor or hospital and it will not be valid.
Thank you everyone for your repy's

 

[anonymous]

Medicaid is a state ran insurance program based on need, you will want to contact your local department of Health and Human Sevices. It may be easier to go through a social worker at the hospital, they know the best people to speak with.


Luke

 

[princesss]

This is a touchy subject for me. I have worked and when at work I do all that I can to make up for the time that I will or have missed. I'm straight up with employers and explain that I completely understand if my Cf gets in the way that I will leave no hard feelings...so far so good. I only worked about 22-24 hours a week and with that I'm exhausted by the end of the week. When I'm working or in school I find myself in the hospital allot more. I'm currently not working and haven't been for over a year and haven't been in the hospital in over a year. My health is ok, but when not working I can take those "rest days" and not feel stressed about missing work or school. When I'm not working my health is so much better but my mental health isn't. I feel useless, lazy and never have money to do allot of the things I want to. It also makes me think how unattractive this may seem to someone, I mean I'm 28 with no real career. This is when I wish people would understand more about Cf and then realize that living each day with CF is a full time job.
Carly

 

[anonymous]

To the poster,
what state are you located in?
I believe that your son is entitled to Medicaid benefits SOLEY on the fact that he is recieving SSI. It may just be a CA law, but that is how it works here. I recommend calling the Social security administration to find out from them if he qualifies for the medicaid. It could be that he has had the coverage all along and they just didn't send you a card. IF not, you may have to separately apply for medicaid, but your sons condition should qualify him.

Good luck with everything.

Julie

 

[Beowulf]

I also use to work about 50-60hrs/week, but my health was strong at that time (FEVs were between 70-85% depending on the week). But these days, I am working 30 hrs/week and that is on the verge of my capasities. My FEVs are now at 50% on a very good day. Best of luck.