New to this forum and need advice and encouragement

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Hi everyone, my name is Sarah. I am a 29 year old mom of 2 girls. I just started back at school (from scratch) and am going down the path of becoming a nurse. I have a condition called postural orthostatic tachycardia syndrome (pots). It is a disorder of the autonomic nervous system that causes my blood to pool in my feet upon standing or if I stay in a single position too long. I am also very sensitive to heat. This condition has changed me from a distance runner to using a wheelchair part time. I can walk around and even run just like most people, but if I stand for more than a few minutes my heart rate increases to over 130 and my bp drops. (I will eventually faint if I stand too long.) I have had this for the past 5 years.

I have wanted to become a nurse for several years now. I decided I am going to try because I am so tired of giving up on my dreams and calling because of a disability. The problem is that my disability is invisible. I look healthy on the outside but am in a constant battle with gravity on the inside!) Most people and medical professionals I know have never even heard of it. I have had a hard time getting recognized as having a disability. I have also learned that when it is seen as a disability, people treat me differently even though they know it is unfair. Even my own family an some close friends don't take my dreams seriously and are always discouraging me with remarks like: "how are you going to take care of sick people when you are always sick?" or "you can't even stand up and walk around the mall, how will you walk around a big hospital?" Sometimes I feel like I might as well just give up and lay around moaning all day like some people think sick people should! I am tired of people telling me I can't or shouldn't. I want to prove to them that I can and will accomplish my dreams in spite of my disability.

The first thing I need advice on is: Do any of you that are nurses working in the field now ever use a wheelchair at work? Am I really crazy for even asking this? Do any hospitals ever allow this? I know I will be a great nurse and probably won't need to use a wheelchair alot, but there are some days when my bp is so wacky that I need to have a chair available so I can be the most alert.

I look forward to reading your threads and getting to know you guys. I really need a support system of people that can help me get through all of the adversity I have been facing latley.

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Specializes in Nephrology, Cardiology, ER, ICU.

I would have a frank discussion with the nursing school administrator or dean as to your limitations. Is this a condition that is likely to get worse as you age?

As to using a wheelchair - probably not while doing clinicals but if you choose a job where you are not in direct pt contact, or with limited pt contact, I would think that jobs would be available.

I admit that I had not heard of this before so looked it up: What helps?

There are several nonpharmacotherapeutics too listed. This website also lists lifting as being counterproductive and possibly may increase symptoms.

As a nurse, you will be expected to lift patients.

I'm going back to my original suggestion - bring in some written info for the dean/admin to discuss with them or go directly to the ADA office of the school/campus you wish to attend and see what they say.

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Specializes in NICU.

We had a department educator who used an electric scooter all the time and she came to us with 20+ years experience in Labor & Delivery and Newborn Nursery.

I really don't know much about your condition, but if lifting heavy objects (people) is counter productive, have you thought about working in a Neonatal ICU, a Step-down Nursery, or a Newborn Nursery. These areas involve a lot of standing, but I don't see why you couldn't sit in your wheelchair and do the work.

Good Luck to you as you follow your dream.

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Hey just wanted to add, why should u have to consider non-clinical nursing roles if direct patient care is what you want!:)

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Specializes in ER, HH, CTICU, corrections, cardiology, hospice.

I went to NP school with someone with your condition. It is a challenge to be sure. THere are ways around EVERY obstacle, you just have to be willing to try and fail until you succeed. I think we have all had obstacles in our way and we have all achieved our goal if we stuck it out. It meant asking for help from others.

Has your cardiologist discussed baroreceptor stimulation with you as a possible aid? I do not know if it would be of any benefit or not as it is used to treat HTN that does not respond to medications.

Good luck, be open, be flexible.

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Hi! I have not posted here before, but had to reply after seeing your post. I also have POTS and have not been able to work in nursing for the past 3 years, although I am hoping to return soon to a modified position that will allow me to use some of my skills.

I believe I had POTS for years before being diagnosed and always have found nursing to be a very physically and cognitively demanding job. I became very symptomatic 3 years ago, and was unable to continue working. One of the symptoms that became most disabling for me was "brain fog". I began having a lot of difficulty with concentration and multitasking; two skills that are essential to any nursing job whether a staff nurse, desk job, etc. This was the main reason I felt I had to leave work. I finally received the diagnosis, which explained so much about the difficulties I had experienced in the past.

I have been slowly improving to the point now were I feel I can handle a modified position where I will be able to do most of my work sitting down, and I will be able to focus on one task at a time instead of juggling so many tasks at once.

I have enjoyed nursing in many ways over the years, but it has really taken a tole on my health. I hope you are able to find a position in the nursing profession where you will be able to look after yourself too. Maybe had I understood this condition at the beginning of my career, I would have steered it in a different direction to avoid the stress, and physical excertion which for me, over time, worsed my condition.

I hope I'm not discouraging you, I just think you will do yourself a big favor if you plan your career with POTS in mind. I wish I had understood this condition years ago. I wish you the very best of luck and hope you love nursing!

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