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Do you work, and if you do, what is your health like? Lung function etc

M

Medusa22

Guest
Hello everyone! My name is Emer and I used to be on this site under the name 'emerenta18'. I've got CF and I'm 25 and from Ireland. I already asked this question on the UK forum but I thought that this forum would have more traffic and therefore more replies, hopefully! I am in my final semester at University and I will then be looking for a job three days a week.

I also worked part time before I started my degree. I just wondered if anyone works full or part time or not at all and what sort of level of health you have? Sometimes I feel guilty and think that I should work full-time after college, so I'm just looking for some replies to compare. Just to give you an idea of my health situation - I have MRSA in my lungs and nose, Aspergillus and my lung function fluctuates from 55-63%.

I'm not on oxygen or anything like that. I need IVs every 2-3 months, and they won't let me do home IVs anymore because my infections are frequent. I have asthma, allergies, GERD and chronic pansinusitis. I am pancreatic sufficient but I do get blockages from time to time. Thanks for reading!

Emer
 
K

kyeev

New member
Medusa22 said:
Hello everyone! My name is Emer and I used to be on this site under the name 'emerenta18'. I've got CF and I'm 25 and from Ireland. I already asked this question on the UK forum but I thought that this forum would have more traffic and therefore more replies, hopefully! I am in my final semester at University and I will then be looking for a job three days a week.

I also worked part time before I started my degree. I just wondered if anyone works full or part time or not at all and what sort of level of health you have? Sometimes I feel guilty and think that I should work full-time after college, so I'm just looking for some replies to compare. Just to give you an idea of my health situation - I have MRSA in my lungs and nose, Aspergillus and my lung function fluctuates from 55-63%.

I'm not on oxygen or anything like that. I need IVs every 2-3 months, and they won't let me do home IVs anymore because my infections are frequent. I have asthma, allergies, GERD and chronic pansinusitis. I am pancreatic sufficient but I do get blockages from time to time. Thanks for reading!

Emer
Click to expand...

Hi Emer,

Went to University and all that and have worked full time 40 hours a week for the last 15 years.
I'm aged 38, lung function is 40%, culture P.aeruginosa, and I go on IVs every couple of months.
I'm pancreatic insufficient.

I reckon if you're well enough to complete a university degree, you're well enough to work full time.
Obviously, the type of work you do will have to suit you though.
I've found time flexibility to be the most important factor (hospial visits/stays).
And don't be afraid to cut your losses and move job if you find the position/boss/deadlines too stressful in a particular company.
Tip: public sector jobs are usually more understanding than competitive businesses...

PS. I've found, if you've proven that you can do well on home IVs they will let you go home.
But if you deteriote or don't improve much they won't let you go home.
Some people need the rest that hospital provides.
I've seen both sides of the coin, sometimes needing a damn good rest in hospital for 2 weeks.
And other times, feeling good, just need a top-up and getting on with life on home IVs and going to work.
 
M

Medusa22

Guest
Hi Kyeev, thank you very much for your response!

What CF clinic do you go to? I'm going to St Vincents. I was going to CUH when I was at home in Cork and they allowed me to do home IVs (which do work for me and I do get better) but Vincents seem a lot stricter and won't let me, no matter how much I give out ;) I'm amazed you've been working full time all these years, good on you! I think I will consider a job that isn't part time.

You're right there about the degree, it is a lot more work than I thought it would be. Is your employer understanding about having time off? I spent 6 weeks of my 12 week semester last year in hospital, I got the flu. I did work when I was on IVs and going to CUH but I wondered if it is problematic being absent from work to take 2 weeks off for IVs in hospital.
 
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