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Third year, just diagnosed with cystic fibrosis

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NeuroRu

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I'm a third year student, off cycle, done mediocre throughout medical school but have passed everything. Part of why I haven't done so hot is because I've been progressively more ill throughout. In the middle of third year I was told I needed surgery for what they thought was just chronic sinusitis. So I took some time off and felt maybe marginally better but really not that much better.

As I did more research and looked at my whole clinical picture the pieces of the puzzle started to fit together and I wondered if maybe I had cystic fibrosis. So during surgery rotation I went to a CF clinic and low and behold that is what has been going on. I'm suddenly on a crazy amount of meds- oral ciprofloxacin, nebulized tobramycin, tobramycin rinse, albuterol and pancreatic enzyme replacement. I'll need many more appointments and possibly an admission to work on clearing my airways as much as possible. My surgery rotation has been very understanding and accommodating as I adjust, process, and hopefully start to feel somewhat better soon.

Where I am really struggling is... what the hell do I do now? I have a non-classic CF phenotype but could be severe nonetheless. The thing is, I have no idea what is in store for me and I don't think medical research has really figured it out either. There just isn't much data on life expectancy and morbidity for patients diagnosed at my age (30). The specialties I was considering most strongly were emergency medicine and general surgery. I love working with my hands, I love being in the OR. But now I am considering whether I will have the physical stamina to do specialties like those and I also need to think about my exposure to infectious agents. And of course I can't get out of medicine because of my insurmountable student loan debt, and also because it is my dream and I love it.

Please advise. Any thoughts or insight would be appreciated.

TL;DR- Third year, just diagnosed with CF, prognosis unknown, wanted to go into gen surg or ER, not sure I can handle those now, not sure what to do.
 

SurfingDoctor

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    Honestly, I have no experience with this and so take this with a grain of salt, but I don't think you should let your illness get in the way of your passions. Technically, a chronic medical condition should be considered a disability (whether or not someone views it that way is a different matter) and thus your future residency/fellowship/profession is obligated to accommodate you. Thereafter, if you have to be hospitalized or have lighter work duty, then you have to be accommodated by your employer. Given the diagnosis of CF at 30 years old is probably rare (I've honestly never heard of anyone being diagnosed so late, but then again, there are lots of CFTR variants), the expected outcome is probably a complete unknown. Is there a person who is an expert in the field who could give you insight? Either way, the uncertainty means that while you may get fatigued or ill and that may be progressive, the opposite could also be true and that the impact on your life (assuming you follow prescribed treatments) could be minimal, if at all. Again, I wouldn't let uncertainty get in the way of doing what you really want to do.

    As for how to deal with it in the future, again I have no personal experience or expertise, but this article may be helpful.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071615/
     

    Goro

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    Just to verify, were you actually genotyped for CF????? Even if you were, I'd ask for a repeat test. It's highly unusual for someone to have such an atypical phenotype.

    Worst-case scenario is a lung transplant is in your future. How much lung function do you have?
     
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    NeuroRu

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    Just to verify, were you actually genotyped for CF????? Even if you were, I'd ask for a repeat test. It's highly unusual for someone to have such an atypical phenotype.

    Worst-case scenario is a lung transplant is in your future. How much lung function do you have?

    I was genotyped and have the delF508 on one allele and a less devastating but still significant residual function mutation on the other. Go to google scholar and look up "atypical" "non classic" or "adult" cystic fibrosis and there is a decent amount of literature on this. Approximately 50% of new CF diagnoses recently have been in persons over age 18. The phenotype is highly variable, but no, it is not unusual, just not taught in medical schools routinely yet.
     

    NeuroRu

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    Honestly, I have no experience with this and so take this with a grain of salt, but I don't think you should let your illness get in the way of your passions. Technically, a chronic medical condition should be considered a disability (whether or not someone views it that way is a different matter) and thus your future residency/fellowship/profession is obligated to accommodate you. Thereafter, if you have to be hospitalized or have lighter work duty, then you have to be accommodated by your employer. Given the diagnosis of CF at 30 years old is probably rare (I've honestly never heard of anyone being diagnosed so late, but then again, there are lots of CFTR variants), the expected outcome is probably a complete unknown. Is there a person who is an expert in the field who could give you insight? Either way, the uncertainty means that while you may get fatigued or ill and that may be progressive, the opposite could also be true and that the impact on your life (assuming you follow prescribed treatments) could be minimal, if at all. Again, I wouldn't let uncertainty get in the way of doing what you really want to do.

    As for how to deal with it in the future, again I have no personal experience or expertise, but this article may be helpful.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071615/

    Thank you for the input and the article. I hadn't thought of that I could be considered as having a disability; that could help a lot. I am working with probably one of the world's experts on adult CF, and from what he has told me it sounds like I am somewhere in the middle as far as age of presentation and severity at diagnosis. So better off than classic childhood CF but not as well off as people diagnosed after age 40 who tend to have fairly normal lifespans. But overall sounds like it will be pretty unpredictable. I think your idea of going for it since I don't know the prognosis is the more positive option, and more my style.
     
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    hamstergang

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    Where I am really struggling is... what the hell do I do now? I have a non-classic CF phenotype but could be severe nonetheless. The thing is, I have no idea what is in store for me and I don't think medical research has really figured it out either. There just isn't much data on life expectancy and morbidity for patients diagnosed at my age (30). The specialties I was considering most strongly were emergency medicine and general surgery. I love working with my hands, I love being in the OR. But now I am considering whether I will have the physical stamina to do specialties like those and I also need to think about my exposure to infectious agents. And of course I can't get out of medicine because of my insurmountable student loan debt, and also because it is my dream and I love it.
    Sorry this happened to you. I don't think SDN is a great place to go for answers. Your doctor that actually knows your personal condition and more general prognosis would best be able to have this discussion with you (and don't forget, they're a doctor so they know things about med school and residency).

    If you need to take some time for sick leave or stretch out your 3rd year into an extra year, you should talk to your medical school about doing so. You want to avoid doing poorly as a result of this.
     
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    Merely

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    Sorry this happened to you, hang in there and hopefully things will get better with the meds. EM isnt as bad as gen surg though
     
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    Crayola227

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    @aProgDirector is very helpful for a PD perspective on all things residency related.

    I hope this isn't too much of a crosspost, usually I link to the original mega post for interns but I edited this down for you.

    In here is information related to mental health, substance abuse (if that applies or becomes a problem, I believe self-medicating can happen and is no reason to be ashamed or seek help), and disability. Some is directly applicable to both medical school and residency, and some you'll have to adapt from resident to where you are now. Some is mental health oriented and some is physical. But it will also give you a roadmap for the future. If any of it doesn't make sense and you have questions feel free to PM me. I will keep it completely confidential.

    I'm really sorry this happened.

    I am not your medical provider, and I have not faced anything as scary as what I imagine this must be, but with an unknown medical prognosis I would personally finish medical school being so close to finished. But this is you! Think about family, think about if there's anything you'd rather do than medicine, don't do medicine in light of your health because you feel pigeon-holed by debt. However, if medicine is what you want for the rest of your life right now, go for it.

    I have known people with serious to not serious conditions to find finishing medical school difficult, and some have had to adjust their residency goals. I would strongly advise anyone with a potentially serious condition to seriously consider what will be the most friendly specialty and residency program, and ultimate practice for their particular condition and potential or likely limits. It sounds like you are doing this and that's good.

    Most doctors you talk to will be understanding and empathetic. However, how much they can accommodate a disability in a program, can vary widely, and can sometimes be extremely limited. This is because of the numerous rules and heavy workload, some of which cannot be compromised. Some can. I don't want to be the voice of doom, there are so many success stories in the face of overwhelming badness. I don't want to discourage you. I want you to be able to make realistic choices that will get you as close to your goals as possible. But sometimes the goal has to change, and you have to change with it. I'm sorry to say that, that said, nothing is set in stone. Nothing.

    You can ask your treating physicians for specific career advice. I don't know if they will be helpful but it's a legitimate question for them. It's also good for you to talk to mentors in the specialties you really want, but also to talk to others in some other fields about this specifically. Ask them to give you the most realistic answers they can.

    When you graduate medical school all things will not be equal, you will have suffered and triumphed in a very unique and challenging way
    I just want to recognize what a challenge this is, and to recognize what you have struggled with so far to make it here now
    And to encourage you on your path
    It's understandable for you to have many feelings about this, sadness, grief, depression, all of that, don't be afraid to reach out to talk about your *feelings* too

    You are still so early on in exposure to specialties and the day to day life of being a doc that it might seem like there are more closed doors than open ones. Medicine really is as broad with as many different opportunities as they say it is.

    Truly, truly, there is more than one type of doctor any of us can be good at being, and just as well, enjoy. People who tell themselves otherwise, as you might expect, feel otherwise. All of human experience would tell us that we are all capable of being more than one thing in our lives. Just stating the common wisdom, I wouldn't be surprised if it is of little comfort right now.

    Your situation differs a bit from others I have advised in that it sounds like your prognosis isn't clear. You have time to gather more information before applying for residency. You could consider with your school and providers if a research or MPH year or whatever sort of gap year would be suitable to you if you need more time to process or gather data to help you make any decisions.

    Let me know if there is any way I can help you.

    http://forums.studentdoctor.net/threads/resident-friend-joked-about-suicide.1116935/#post-16240366
    Setting up medical care, particularly mental health, for yourself NOW

    http://forums.studentdoctor.net/threads/alcoholics-anonymous-in-residency.1138505/#post-16691390
    If you have any substance abuse issues that need looked after. There's also a section in there where I talk about disabilities and how they can mesh with your program (given how common substance abuse and chronic pain our in our cohort I thought it worth adding here)

    http://forums.studentdoctor.net/thr...ability-accommodations.1179885/#post-17333196
    I wrote this guide for a disabled med student, but the lessons learned here are useful for residents with disabilities as well

    http://forums.studentdoctor.net/threads/disability-insurance-in-residency.1136662/
    It might not be too late to consider disability insurance. Ignore my post, it is excessively negative to scare totally healthy people and the rest of the thread is more useful.

    I think @aProgDirector gives great level advice
    Check out their past posts on stuff to learn more about how things work in residency.
     
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    NotAProgDirector

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    From a 10,000 foot view, I'd say that you shouldn't let this limit you, within reason. Who knows if this will limit your lifespan? I would live life assuming that, with good care, it won't. Lots of medical advances are possible in the next 10-20 years. I wouldn't plan on becoming a marathon runner, but I expect if I googled it I'd find someone who runs marathons with CF.

    Looking at this question from a residency application standpoint, I think there are a couple of questions / topics for discussion:

    1. Will you be telling programs that you have CF, or keeping it private? There is no requirement to disclose this. If you're taking an LOA from your training to be treated, a very reasonable decision, then that will be disclosed in your application. But you can keep it vague and just say it was for "treatment of a medical condition". PD's might read into that something you don't expect (i.e. substance abuse, or a severe mental illness). But it's your choice -- and if there is no LOA, you don't need to mention it at all.

    2. The ADA (Americans with Disabilities Act) and it's extensions (The ADAAA) will definitely apply here. Employers must give you reasonable accommodations if they will help you perform the essential functions of the job. Employers must allow flexibility for you to receive treatments, and certainly for any LOA required for severe illness. As long as you're expected to recover within a reasonable timespan, they can't fire you for this.

    This assumes you can do all the functions of a resident, which I don't see as a problem. In EM, you wouldn't work 24 hour shifts -- but I expect that with good treatment that wouldn't be an issue either. If your CF causes a chronic cough, especially with any sputum, then long stints in the OR in full sterile clothing / masks might be an issue.
     

    Law2Doc

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    I'm a third year student, off cycle, done mediocre throughout medical school but have passed everything. Part of why I haven't done so hot is because I've been progressively more ill throughout. In the middle of third year I was told I needed surgery for what they thought was just chronic sinusitis. So I took some time off and felt maybe marginally better but really not that much better.

    As I did more research and looked at my whole clinical picture the pieces of the puzzle started to fit together and I wondered if maybe I had cystic fibrosis. So during surgery rotation I went to a CF clinic and low and behold that is what has been going on. I'm suddenly on a crazy amount of meds- oral ciprofloxacin, nebulized tobramycin, tobramycin rinse, albuterol and pancreatic enzyme replacement. I'll need many more appointments and possibly an admission to work on clearing my airways as much as possible. My surgery rotation has been very understanding and accommodating as I adjust, process, and hopefully start to feel somewhat better soon.

    Where I am really struggling is... what the hell do I do now? I have a non-classic CF phenotype but could be severe nonetheless. The thing is, I have no idea what is in store for me and I don't think medical research has really figured it out either. There just isn't much data on life expectancy and morbidity for patients diagnosed at my age (30). The specialties I was considering most strongly were emergency medicine and general surgery. I love working with my hands, I love being in the OR. But now I am considering whether I will have the physical stamina to do specialties like those and I also need to think about my exposure to infectious agents. And of course I can't get out of medicine because of my insurmountable student loan debt, and also because it is my dream and I love it.

    Please advise. Any thoughts or insight would be appreciated.

    TL;DR- Third year, just diagnosed with CF, prognosis unknown, wanted to go into gen surg or ER, not sure I can handle those now, not sure what to do.
    If I were you I'd probably try turning lemons into lemonade and use this as a compelling hook in a CF related specialty like pulmonology.
    But if you have your heart set on surgery you might as well push on until you can't. EM is a double edged sword -- you can end up with a lighter schedule thanks to shift work which would be helpful if you need any sort of treatment/therapy, but that field will maximize your exposure to every kind of infection that passes through, so if it was your plan B after surgery Id probably pass on it.
     
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